Hidden Recovery

Autism Recovery - The Hidden Truth

2012-02-07T09:30:00.000-08:00

Originally published in the Schafer Report, 11/8/04updated 02/12

1 in ninety one children are born with an Autism Spectrum Disorder. What needs to be known is this: Almost half of the children that get Early Intervention make dramatic progress, some even recover. The fastest growing segment are considered High-Functioning, often meaning they can or will eventually function in regular classrooms, have friends, attend birthday parties and grocery stores with ease. Recovery means that these kids are indistinguishable from their peers. Their disability no longer impairs them from having a normal life. They no longer need support such as an aide in a classroom, therapies, and biological intervention. Many children make incredible gains.

Why is this the case now as we sit here in 2012? Technology from this last decade has brought all these children the chance for real progress and the unthinkable when we were kids, recovery. Therapeutic intervention such as ABA, dietary intervention, and the DAN! protocol has maximized the potential of our children. It’s not just a given that these children spend their entire education in special education. Back when we were kids, it was one-stop-shopping with our pediatricians. Today that’s just not possible and unfair to pediatricians. Twenty years ago, we only had Greenspan’s Floortime Therapy for all special needs kids. Today there are numerous therapies to address our individual children’s needs and the growing variety of disabilites out there. All we now know about our food supply and the environment has dramatically improved the outcome of our children.

Many High Functioning kids can learn in regular classrooms and other places. We all went to school with a kid that was quirky didn’t we? Our kids CAN eventually get to that level of functioning after receiving good therapy and lots of it. Having your precious child go to school just like any other kid is a dream of every ASD parent. Just to go through that door, walk down those hallways that we all remember as a kid. The sounds of a school. The smell of the cafeteria, your papers and books.

Why don’t we hear about these kids? Where are they? What did their parents do to make it happen?

We don't see them because many parents keep the label a secret so their children can lead a discrimination-free life. These parents move on, try to recover themselves, and create a new life for their family. They cannot be public about their past and support autism efforts at the cost to their own kids. Unfortunately, the stigma of being less than perfect still dominates.

Because all parents discriminate.
Parents often do not want their typical kids to play with children with special needs. It is not a concern of mine if people get defensive by this fact. It is true. After all, what has happened to this generation of children will be examined for years, and in no way the dust has settled. It’s a big battleground – from the pharmaceutical companies, to government, to big offenders of environmental contamination, all wrapped up for us in a big bow. No one wants to raise their hand and be accountable. We are still in the Cover Your Ass and Let’s Run and Hide phase of this pandemic.

We all discriminate. Let’s face it, we all want our kids to play with the perfect friend. A mild temperament, similar or higher developmental level, good natured, doesn’t hit or bit, and has a nice mom. We don’t want our kids to pick up bad habits. We want them to have a positive fun experience. Parents discourage their kids to play with the ‘wrong kids’, those that may not look typical, wear different clothes, come from a different socioeconomic background, have strange parents, do poorly in school, or are just plain squirky.

With little information and TV movies to go on, these parents are in the dark about Autism, how vastly different each and every kid with the same diagnosis presents. They are unaware of the fact that this is THE NEW GENERATION of typical peers – 33% of the kids in elementary and preschool classrooms in America have some developmental issue. Pull-outs galore for reading, writing, and other learning challenges are the norm. Having an ASD is now part of the norm. A handful of kids for each class have services of some kind. Really.

All parents know is that they want to protect their kid. They want the best possible learning experience in school. They want to make sure they can learn without distractions in school. They can’t teach tolerance because they themselves are ignorant. They don’t know what to do with an Autistic kid at a birthday party, on a soccer team, or at their house for a play date. It's awkward, uncomfortable. How should they act? What do you say to the mom? They don’t want THEIR kid to be affected in a negative way by an Autistic kid. Often, instinct and fear guides us parents, myself included. Sometimes that's a good thing. For typical parents, ignorance and fear make them choose the easy route - don't call, don't invite, avoid.

Each new school year parents are faced with more and more aides in classrooms with no explanation. Parents lack knowledge about this NEW GENERATION of typical peers. The irony is this - Autism is the norm, part of the typical make-up of our classrooms.

There is no leadership, no information given to parents about what makes up your typical classroom. No one sets the tone. Sadly the school district, PTA’s and other organizations are not straightforward. It’s discussed in small groups of parents off-the-record. Economics play a big role when districts try to accommodate special kids’ needs at their various schools. They must look at their unique population of children that require services and try to accommodate everyone with what they've got - their pool of therapists, equipment, space, transportation, and lay it all out like a big puzzle. For example, one school may have a lot more special needs kids because it’s newer and has the space for therapy. With no explanation, parents grumble and ask “Why does my kid get stuck with 3 special needs kids and their aides in my classroom? One child isn't even in this district!” they exclaim. This adds fuel to the discrimination fire.

Parents have NO IDEA the complexity in fulfilling a child's modified education program – while minimizing costs at the same time. Schools must consider factors like bus routes and sibling separation while attempting to maximize a child's therapy hours AND therapists hours at school. Parents don’t realize that when they DO see a special child in their classroom with help, one of two things have occurred:

*The child has very significant issues that disrupt the classroom, so the school has to address them.

*The parents had to sue or fight like hell to get those services.

Because of the factors, particularly economics, schools are constantly faced with making hard choices, often playing "god" on whom is worthy of X,Y, and Z. Schools aren't in the position to automatically hand out a beautiful program on a silver platter. They do what is best economically first. Incredible isn’t it??

Because the therapists filter information
Therapists are reluctant to share stories about cases where the kids make it all the way through and are blessed with a“normal” life, a life no longer disabled. They are even reluctant to share huge gains. If parents have this knowledge, they feel the parents would expect this outcome. They want the parents to be realistic and not give false hope. The benefits of sharing what can happen, what DOES happen can inspire. It can give the fuel needed for a desperate and overwhelmed parent to figure out what they need to do. This far outweighs the very small percentage of cases where you leave the parents feeling depressed or inadequate or filled with unrealistic expectations. As of August 2007, I can attest to this personally by comparing positive comments versus negative ones I get in my Inbox.

I resent the fact that providers choose to make life a bit easier on themselves, sacrificing hope for certain families. It the PARENT’S right, not individual providers or schools to filter ASD info. This makes me crazy! A friend recently shared with me “it’s like a cancer doctor NOT telling a patient there is hope for recovery simply because not all patients do recover.”

Some providers don’t believe there is ever an end to therapy. Therefore, they do not believe in recovery because it goes against the philosophy behind the intervention they practice. Also, the new technology hasn’t been played out in great numbers into adolescence and adulthood. If it’s not published in a journal with science to back it up, it doesn’t exist to them.

And we all know that answers don't begin in a journal. How many times have you read a piece of research, and ask yourselves why in the heck did they put money into THAT? The general public already knew THAT answer!

Research, technology, and learning grows each day. Parents are the managers. From home-life to the biological piece to the therapeutic piece. No one else is in that position. Any parent would love to share this role - impossible. Every week parents tell me how my story inspires them. “Is it worth it? All this work? All this money? This sacrifice? The confrontation with the
school district?

What if I said no? First, it would be a lie. Second, there may be many parents that wouldn't react by ACTING. Moving their obstacles out of the way to really tackle the disabling parts of ASD. Maybe they would not be as committed. Give up. Thinking that it’s a fight they can never win is dangerous. Each kid can win no matter how close they get to recovery. Degree of severity, age, or other factors should not be an issue towards maximizing the potential of your child, leaving no stone unturned.

Media, and what we can do
The Autism community must press to provide training to schools, particularly education students. Medical students and nursing students, along with others in any caregiving role would be instrumental in changing the landscape on how these children are understood and cared for. The Autism community must press for articles in general magazines and more T.V. about the enormous differences within the spectrum. How about an article sharing the day in the life of a mainstreamed child, with viewpoints from other parents and their peers? Don’t get me wrong, I’m happy about any Autism press. However, providing stories only about the stereotype increases awareness about Autism but doesn’t provide any new information about the profile of our children today and how that impacts our children's’ school experience.

We need education. Nobody is facilitating relationships between typical and ASD parents. Although Autism and Aspergers are trendy these days in media, the subject is taboo in real life. We are not utilizing the information that is so accessible for all to see, as a parent, a neighbor, a teacher, a school administrator. Early intervention funding will get a real fighting chance at passing on all levels – federal, state, and local if we raise awareness and bust this thing wide open. Thankfully, Jenny McCarthy has greatly helped in this area. I am still waiting for day-to-day changes in school.

THE NEW NORMAL

The new normal is mind boggling. The numbers are much higher in the younger years like this and taper off as you look at middle and high school.

A great stat from the American Acad of Peds states that 1 in 6 kids born today have a developmental disorder or developmental delay.

Here is what my son's typical playgroups and classes looked like through the years so far:

New Mommy Group 0-1 year old:10 kids in total (natch, they all didn't have a dx then):
2x Autism Spectrum Disorder
2 x ADD
2x Sensory Integration Disorder
1x Speech and fine motor delay. The child couldn't be understood by his peers until he was 5
years old, so it wasn't a redefinition of criteria.

Preschool: Class of 18 kids: my kid with Autism, 3 kids with a speech delay, 1 kid with sensory
integration, one kid with ADD.

Kindergarten: 20 kids total in typical classroom in a public school. 2 kids ASD, one kid ADD, 3 kids speech and OT delays. Again, the speech and OT delays affected their ability to be understood and do any projects. The teacher had been doing the "same ole" for 20 years, so it wasn't a change in criteria here anyway.

1st grade: 22 kids in total. One kid Autism, one kid Down Syndrome, 3 kids with a behavior plan, have IEP - unsure of an actual label, 2 kids speech, 1 kid OT, and 4 kids get pulled out ofclass for reading help 2 times a week(they are barely reading, criteria could be argued here?).

In total, in our little po dunk elementary school, 12% of all kids attending have an IEP. And this doesn't include the kids that we all know need one or had one previously.

2nd grade: 3 ASD kids including Leo confirmed, and 2 behavior plans. And interestingly, the parents of typicals think the para is there to help the teacher, when in fact she's dedicated to one child. Only a few know of the one special needs child (ASD). Leo and one other boy haveASD. No one knows about Leo, and a few know about the other boy, but not in this class.

3rd grade: Update: I can see one behavior plan, 1 ADHD with occasional para, 2 ASD kids, one being Leo, and another boy I recently figured out. One child with Tourettes.

Note: I've seen many presentations of P.A.N.D.A.S. across all grade levels in elementary school.

4th grade: 4 kids that have or had IEPs previously. Leo seems to be the only kid on the spectrum (although he doesn't technically meet the diagnostic criteria). More P.A.N.D.A.S. and Lyme in all grades.

5th grade: 5 kids with issues so far. Not sure what they are yet since we are still so new. One more P.A.N.D.A.S. kid, and one behavior plan, maybe O.D.D.?? A couple of medicated kids so far. Hey, it's early in the year.

6th grade: Don't have a good sense of how many kids with issues since this is big-time middle school!

7th grade: Block teacher has two IEP meetings during conference time. I can see lots of issues around school, but not sure of how many. I know many children are farmed out to other school locations that can't tolerate school without an aide. No one seems to have aides in middle school. However, all around me I meet parents that have kids with health problems or behavioral problems. I am not so new anymore so the terrain is getting clearer.

*Ashley Morgan, parent of *Leo, age 13, recovered for almost 7 years. busterfoofoo@gmail.com
*These are alias names for protecting my son from discrimination

13 To 14

2012-02-07T09:22:00.001-08:00

This feels really nice, blogging again! It's been such a long time since Facebook has taken over the top destination for wasting time in my life. I've kept up on Leo's timeline, although I do owe a 7th grade update.

Here is snapshot of what Leo is like lately: Yesterday I was too sick to do my morning routine, so I asked Leo to get himself ready for school and walk to the bus (usual) without me so I could sleep in. Sydney was sick too. I came downstairs later today to find evidence of scrambled eggs for breakfast (he even soaked the pan), leftover chinese food for lunch (rice on counter), and he even remembered to lock up. He also let the dogs out and fed them.

After school, he texted me on the bus to tell me he's going to a friend's since it was so nice out. No need to stress about a snack, his body is no longer hypoglycemic. Even though it's been years, I don't forget that my life once was ruled by many things including the food clock. He came home later and reported (after much encouragement since he doesn't like to talk much these days) that they played basketball in the street, then browsed for inappropriate rap music on ITunes. They have block class together, so they actually did a little homework.

He is making almost straight A's, and is friends with a wide variety of boys - he is social accepted by the cool kids/jocks as well as the band kids and nerd/math kids. He is definitely full-swing into puberty. I see that brain fog every so often. He pushes back, sometimes lazy, and avoids talking to us about his personal life. He confides in Sydney, his younger sister.

Leo continues to talk to his BFF back in Connecticut about once a week by Skype or through their phones. It is so wonderful to have this boy in Leo's life.

Dad has been busy at work, so Leo has taken over some of Dad's household chores - even doing all of the recycling and garbage without being asked on garbage day (yesterday). He is a good boy and very considerate and thoughtful! I am so inspired by him.

I know this may be normal for most 13 year olds, but for me this is a miracle from where we started.

Me? I am into my fourth year of managing Sydney's Chronic Lyme Disease. She was a very very sick little girl, but today she is back and doing really well. She is in school full-time and dancing about 8 hours a week!

I've been feeling old lately, and wishing I could just turn off a switch so I don't see what I see day after day. Any Veteran mom may feel the same way? Don't want to see what I see anymore. Will post on this later!

Hoping to get back to my homeopathy studies while maintaining my websites and book. Need to figure that one out. Hoping to be a two income family once again! Fingers crossed Sydney stays stable as we approach middle school in the fall.

Not sure if anyone is reading this?

In health and hope, Ashley

INTERVENTION OVERVIEW

2008-04-01T19:00:00.000-07:00

Intervention Summary: 2 – 6 years old. See recovery section below.

Year 1:(Looking for a program, just diagnosed at 2 years old) 45 minutes/wk sp. Ed. Tutor, 45 minutes/wk SLP, 6 hours/wk of typical daycare with age appropriate peers, kiddie gym class. Formal table sessions with parent 2 hours a day. 24/7 redirection, modeling, and prompting, copying what the therapists did. Target skills: Self-help, motor imitation, receptive and expressive object and action labeling, simple requests, and basic toy manipulation. Bio intervention: DAN! Protocol, GFCF, organic whole foods,supplements, no vaccines/antibiotics) Regrets: No ABA program - ideally we would've started right off with at least 25 hours.

Year 2: (Prek - 1st year, 3 years old) Typical preschool 2 mornings, daycare 2 afternoons, SLP 1 hr grp, Gymboree, 2 typical playdates per week. Formal table sessions with parent 2 hours a day. Approx. 16 hours/wk with typical peers is 16. Zero hours in Special Ed environment. All services take place at home elementary school. Target skills: Complex skills including imaginary play, describing and complex language, emotion recognition, and basic cause and effect, with an emphasis on generalization. Bio intervention: DAN! Protocol, GFCF, organic whole foods,supplements, no vaccines/antibiotics) Regrets: No ABA program, especially the part where he had no shadow. All those opportunities lost.

Year 3: (Prek - 2nd year, 4 years old) Typical preschool 3 mornings, daycare 2 afternoons, SLP 3 hours one-to-one, 3 hrs ABA one-to-one, 11 hrs ABA shadow at typical prek/daycare, 0T 1 hr, PT ½ hr, totaling 14 hours of typical peer time, 7 hours of one-to one therapy. Formal table sessions with parent 2 hours a day. Zero hours in Special Ed environment. Target skills: Abstract skills such as abstract reasoning, senses, observational learning, and social skills are targeted Bio intervention: DAN! Protocol such as The Diet, Chelation, organic whole foods,supplements, no vaccines/antibiotics) Regrets: Not enough ABA hours - not for lack of trying

Year 4: (Prek- 3rd year, 5 years old) Not even a question, we held our fall birthday boy. He needed that extra year to continue therapy in an environment he blossomed in. Typical preschool 5 afternoons, daycare 5 mornings, SLP 2 hours one-to-one, 3 hrs ABA one-to-one, 27 hrs ABA shadow, OT 1 hr, PT ½ hr, totaling 33 hours of typical peer time, 7 hours of one-to one therapy. Target skills: Theory of mind and executive functioning skills, understanding cause and effect, relationships, predictions, inferences, and comprehending social cues. Bio intervention: DAN! Protocol (diet, chelation, enzymes), organic whole foods, supplements, no vaccines.

Recovery Year 1:( Kindergarten, 6 years old) Leo began his first year at a typical elementary school with no support. He no longer requires an aide or any therapy such as ABA, SLP, OT, and PT. Leo's teacher does not know about his former diagnosis or that he had services of any kind. Leo's friends and their parents do not know about his former life either. He rides the bus to and from school, and is a regular student in his class. He enjoys recess, music, art, gym, and library time. He maintains lots of friends and is very social. Bio intervention: Still continue GFCF diet, even at school. Still maintains organic whole foods lifestyle including supplements and mild occasional detoxing to minimize toxic load.

Recovery Year 2 (1st grade, 7 years old)Leo continues to enjoy his new life. His first grade teacher doesn't know about his past. He is flourishing academically and socially. He loves school, and is a happy guy. He maintains his old friends while making new ones. Minor executive functioning issue (callingout, talking out of turn). Marked improvement from beginning to end of year. Doesn't stand out - 3 other classmates that do this lack impulse control across other situations as well. That's kids, but I know the reason behind Leo's weakness. 45 out of 50 highest
academic marks, the rest satisfactory. Incredible story telling ability, amazing math understanding. Handwriting perfect for a 1st grader. Bio intervention same as Recovery Year 1.

Recovery Year 3 (2nd grade, 8 years old) Business as usual. Teacher is mediocre but Leo is growing and learning per usual. Minor executive functioning issue remains (talking out of turn when excited about a topic). Showed improvement over the year. Hi marks continues. Excels in all categories - math, reading, and personal development. Handwriting perfect. Bio intervention same as Recovery Year 1. Year ended quietly, a success.

Recovery Year 4 (3rd grade, 9 yrs old) Excellent teacher this year. Anonymity intact. A typical 3rd grader. He enjoys baseball and carpooling with his close friends. As a solid B student, his marks are improving all around. Holds his own even in challenging areas like organization, strength for Gym, creativity for Art. He has demonstrated a gift for Music, plays the piano at home, and at school the Recorder. Performed publicly for the first time by joining his 3rd grade class in the Spring Concert. Played AA, loves baseball and is very average. Bio intervention similar as Recovery Years 1 and 2. Utilizing more homeopathic/herbal supplements for annual detoxing and health maintenance. Blood sugar sensitivity almost non-existent. We are no longer limited by a food schedule because of it. Reduced dependency on Soy, so have added a little Dairy into his diet (with enzymes) on occasion. Our annual goal is to reduce intake of products that contain GMO's and endocrine disruptors/estrogen mimicers (like Soy, hidden MSG). We are trying to be more "green" at home, and reduce our reliance on plastic products.

Recovery Year 5 (4th grade, 10 years old). Mediocre teacher this year. His first male teacher. So far he finds school extremely boring until lunch. Has his BFF in class, and so far looks like it's a good group of kids. Playing AAA fall ball, and loves watching football and playing fantasy football and Guitar Hero with Dad. Continues to be GF, low soy, and low processed foods, much like last year. Leo enjoys gluten infractions for social reasons. I'm also not as strict with the gluten - I don't care about sauces and ingredients where it's fractional. As long as he doesn't do it too often and takes enzymes regularly, it's manageable. We detox regularly and have him on a nutrition/immune protocol to help manage his tics (they come and go in severity). We take advantage of GF popularity and order GF pasta and pizza regularly from restaraunts that DELIVER. Unheard of when he was a toddler. I bask in the convenience!

Leo played basketball during the winter - his first time, but he learned the game and caught on and really loved it. Not naturally aggressive, so he had to really work on "getting in there", amazing considering his hypersensitive eyes. Music, yo-yos, and Teck Decks, and riding his bike are big. Spring has been great - no allergy symptoms (yeah!), just started baseball - loves to pitch, has a great arm (really, not just mom saying it!). Grades are excellent - a solid B student - A's in math and science. Shows improvement across the board with the exception of "Effort" in writing. He just doesn't care and there's not much motivation from his teacher. Standardized testing seemed fine - will follow up to make sure there is improvement with the results.

Recovery Year 6 (5th grade, 11 years old)

Doing amazingly well as a "new" kid in his school. Puts himself out there, playing with different kids, acclimating nicely to everythig being new. A real concern for us for obvious reasons. Same regiment as last year: GF, low soy, and low processed foods. Leo enjoys gluten infractions for social reasons. I'm also not as strict with the gluten - I don't care about sauces and ingredients where it's fractional. As long as he doesn't do it too often and takes enzymes regularly, it's manageable. We detox regularly and have him on a nutrition/immune protocol to help manage his tics (they come and go in severity).

Because my daughter was diagnosed with chronic Lyme last fall, we discovered that in addition to a chronically high strep load Leo also has one of the Lyme co-infections Mycoplasma Fermentans along with a very low load of Lyme. We have had great success adding a new treatment, Rifing, to the schedule. We dramatically reduced his bacteria load with this $1500 machine, now we are hooked! The tics were COMPLETELY GONE for months! He had no tics from May/June until just recently ( a newly unidentified culprit). I am sure we'll figure it out soon between the rife machine and the homeopathy machine.

Recovery Year 7 (6th Grade, 12 years old) I couldn't be more proud of Leo. Still new from our big move from New England to the North West, he is popular, has new friends from other elementary schools, and is making straight As. Most important, he is happy and adjusted not only to middle school but also to his totally new life. He loves his new city, our new home, and his lifestyle here. Leo plays baseball year round and is dedicated to the sport. He exercises regularly, looks much more athletic in his form and function than ever before.

Leo is doing great healthwise. He seems to be starting puberty, and so far nothing seems way off. I am nervous to go through puberty with his makeup, it is yet one of those big milestones. Surprisingly, he is no longer hypotonic. He isn't muscle man either, but I am so happy for him. It must be those hormones filling in those missing pieces.

Leo continues to avoid gluten and sugar, but does eat the school lunch about twice a week. He also eats "normal" food on social occasions. We continue eating organic/whole foods at home without sugar and gluten.

Leo continues with an immune boosting regiment and also currently under treatment for Lyme disease. He is basically symptom free, just occasional facial tics that are mild enough to pass unnoticed by peers. We know the tics are the continued sign of Lyme and also a compromised immune system. He seems to no longer have symptoms of P.A.N.D.A.S. nor has his testing the past year indicated a high load of strep. He is still a very healthy boy considering but still has a weak immune system.

Recovery Year 8 (7th grade, 13 years old) Leo is doing great in his second year of middle school. He is getting so big, and puberty is definitely showing it's face with pimples and attitude. I embrace it all, love all the typical stuff that's happening. Although, I wish he'd talk to me a little more:)

He continues to have a nice group of friends at school. They get together on days off, and go to movies, or hang out here at home and play ping pong or catch. I was a big girl, and actually DROPPED him off at a movie theater to meet a friend. I was so proud of myself! haha He texted me when he needed me to pick him up. Ah, the new normal I suppose. He plays baseball year round, and has taken up tennis as another activity.

School is going well. Still strange for me to not have any idea what his days are like, and to not have a rapport with every single teacher. But, he is happy and seems to be learning. He got his locker broken into, and he handled that well.

Leo's health is great. We continue with eating healthy (same as last year), and still on a Lyme regiment. According to his doc, he is ahead of the curve of where he should be, and continues to be symptom-free of brain fog, fatigue, headaches, and facial tics that plagued him from the Lyme. His does occasionally get the tics, but they are very mild and happen around seasonal allergies, big weather changes, and the onset of an illness. It is a warning sign for me to give him Occillococcinum or something else that will protect him from whatever is going around.

Leo is doing great at religious school, and it warms my heart to see him with his community of about 30 kids. They are good friends. I drop him off before class so he can have dinner with his friends. It's a great program, and I am so grateful he has that to count on and to enrich his life.

Why I Wrote A Book

2007-06-11T21:12:00.000-07:00

This book is my effort to “pay it forward.” We are one of the lucky ones - we were able to get top-notch evaluations, therapy, and biomedical treatments in our area.

Children with Autism are my favorite people. After all, my son is one of them! My wish is for all parents out there to find answers for their child. So, I felt the desire to share my learning with others with the hope it contributes toward their success.

When my son became almost indistinguishable from typicals, I wrote an article and submitted it to one of the top parenting magazines. I was so excited to share the news! I wanted everyone to know that recovery was possible, and that there were answers out there. There are ways to address these social deficits!

The magazine wanted to run the article, but required real names and real photos of my son. They didn’t understand that we couldn’t do that because my son would then live with a stigma and not be judged as an individual on his own merit. I had no choice but to put my son first and decline.

Because I was so frustrated, I posted our timeline from birth to diagnoses, and later recovery, using an alias at http://www.hiddenrecovery.com. Never would I have guessed that within a couple years, my website ranked #1 on the Google “Autism recovery” -- search page.

Although it was great that the info was getting out there, it saddened me that this information wasn’t coming from the American Academy of Pediatrics or the National Institute of Health. In fact, the majority of the top websites ranked for the keywords “Autism recovery” are also parents like myself.

As my website gained popularity, I suddenly found myself returning emails from fellow parents with questions about our experiences. I began to see that the same questions were being asked. I collected those answers which became the book you are now reading. This book is an extension to the website.

It has been eight years since my online life began. The good news is there are so many recovered kids and kids making huge gains! Autism awareness has tipped to mainstream thanks to Autism Speaks, Jenny McCarthy, and all of our hard-working Autism practitioners and parent advocates that put themselves out there day after day.

I hope High Functioning Autism: Advice From A Mom, From Diagnosis to Recovery is helpful to you. The book cover and table of contents are posted here on the right side of this homepage for your review.

I wish you all the best in maximizing the potential for your children. Ashley

High Functioning Autism: Advice From A Mom, From Diagnosis To Recovery

2007-04-17T09:55:00.000-07:00

Coming Soon!

10 to 11 Years (New)

2007-04-01T19:00:00.000-07:00

November 5th, 2008 - Day One of Obama as President Elect
4th Grader, 10 Years Old, Fall Update

It's been a mellow beginning of the year for Leo. He seems to like school much better. I think he "gets" his teacher now. He tells me that he learns a lot from him and is very funny, but that he can be very boring. And that 4th grade is boring. I can't blame him. I am thankful his seat is in the front row next to the window. He gets ventilation and the ideal seat for a visual learner. He actually likes violin, an option he can do that requires a pull-out. He and his BFF signed up as a way to get out of being in class, but now he actually enjoys it.

We too "enjoy" the enthusiasm at home in our modestly sized home where there just isn't any escape. He's also gotten back into his acoustic guitar thanks to the people over at Guitar Hero. I say "thanks" to that, but a real thanks to introducing my kid to music I actually love from the 80s.

More about school - he seems to work a little harder this year at homework, taking I'd say 5 to 10 minutes longer. New for Leo, more thinking required rather than execution. Although 4th is more of a repeat year, I can see it's more challenging for him. I continue to monitor, and take note of the geometry assignments that come home that are very frustrating for him. As I've posted before, our strategy is reminding him about the big picture - most things come easily to him, many people take lots of time and struggle on most things, but for him this isn't the case.

We celebrated small this year for Leo's 10th birthday. Yes, I have a child that has a two digit age. I can't believe it! We let him choose one friend to go to a local hockey game with, along with Sydney, his dad, and his cousin and Uncle. The game was great, and he said how he actually liked it better that just one friend was there rather than lots of kids. I think he found it more meaningful and a calmer time. Of course he chose his BFF to go to the game.

These boys are inseparable. They call each other right off the bus, they talk on weekends, email each other. They have a secret code in class for various boy explusions. I can't recall exactly, but it goes something like this: You quietly "cough" to alert the other boy, then slyly hold up a finger indicating what bodily function just occurred. One finger is a burp, two fingers a fart, and so on. I think there's a signal for when you are bored, and when to call the other one an "ass". I treasure all of this, and appreciate the boyhood humor. The finger signals have expanded to two other boys, so let the fun continue! They discovered how to look up bad words in the class dictionary, so they have fun with the exact definitions. Ass is their favorite, and recite the specifics of what a rump is. They giggle and chat about it every day.

Fall Ball was fun and has finally ended, so our days are fairly simple until basketball starts (my idea). Leo just has to carpool with me for Sydney's ballet and hip-hop classes. He still loves coming home and unwinding by going outside to play "imaginary football" where he makes up games in his mind and runs around doing plays. I still consider this a stim, a way for him to transition out of school and let his mind have a break. Yale doesn't since it's appropriate play that's not obsessive, but I see it differently.

On the health front, Leo hasn't been sick all year, and his facial tic (mainly his eyes) are minimal. One kid noticed early on in the year, naturally this was his former arch nemesis-turned good friend-now just "okay" friend that rides the bus with Leo.

Emotionally, life has been a little challenging for Leo because Sydney has chronic Lyme. We couldn't stay to watch all the games or do lots of extra activities because they were limited to how his sister was feeling. I haven't spend a lot of quality time with him, at least he's had it with his dad. As the caregiver-pill-pusher-lead-researcher, I am mostly with Sydney as we go along. She is stable now, so we've "kind of" adjusted to a new life that hopefully is temporary. She has about 6 months to go on treatment (I am estimating), and is back to school regularly. For more about Sydney, go to my blog.

Halloween was fun, of course he ran around with his BFF and his sister, hitting EVERY house this year in a certain easy neighborhood we go to. It was really cute. The conversations about what to be were challenging - he wasn't sure and wasn't into it, but in the end went as a punk rocker. His hair is pretty long now, so we put lots of gel and spray in it, he wore black bracelets and a metal belt with an ACDC t-shirt. He looked like Billy Idol, snarl and all. I figure I got a couple more years and he'll be staying home, until he's an older teen hitting parties (insert look of dread and fear here).

That's about it. Round two with chronic illness for me, so I'm not very happy right now, but I'm grateful my sweet boy is happy and doing well.

1/10/09
Leo had a great holiday season! He sang and played violin at the holiday concert at school. He loves to sled, share a giant bowl of popcorn, talk music and the latest gadgets, play basketball, and talk about girls and bathroom humor with his BFF and his other close friends at school. He got a flag football set and a jersey from his favorite team. Still a sports guy, he was happy. This year I had "the talk" with him and he is now knows that Santa isn't real. He was a little sad, but I told him his constant doubting questions made me think he was ready for the truth. He appreciated that.

He continues to have a blah school year, but continues to perform well at school and have fun socially. The only tiny thing we've seen is a small decline in his reading test score. This could be due to the class he's in, but regardless we are having him read more at home and read to him out loud. He's got a renewed interest in Harry Potter, so it's been fun. I only wish he'd like school as much as he did in the past, but that's a mom talking right? There's always going to be bum years.

We still have facial tic issues, but other than that Leo is healthier than ever. His recent testing indicated no deficiencies, all his numbers are even and consistent. I am not used to that! He is by far the healthiest person in the family. How ironic. I don't let myself forget my freedom from hypoglycemia and slave to the perfect foods all the time. So nice having flexibility.

Leo loves playing basketball this winter, and mom enjoys the short one hour games as a comparison to baseball. So nice! And the gym is toasty (but smelly) so I can actually really get into it. He is learning to use his size to his advantage (an inch away from 5 feet). He is also learning to be more "aggressive". He's such a sweet, gentle guy, not used to backing into his opponents, blocking them, and getting into their faces. I hope this is good for him. I don't have the stomach for sports. He loves it, so I guess it's okay! I hear it only gets worse as they get older.

The patriarch got laid off, so Leo knows we may be moving depending on job opportunities. He seems okay about it. I am trying to be brave about the thought of moving away from our safety net of good friends, his former ABA team nearby in the event he needs support. He continues to show he doesn't need anything, so I have to go forward.

JUNE 7th - END OF SCHOOl, ALMOST

It seems forever since I've posted anything. Leo can't wait for school to be over! Things are status quo, really even keel and life is good for my sweet boy. True, nothing is perfect, and for him his parents are pretty taken up by his sister's Lyme disease. But all in all, things are great.

Leo's friendships are even deeper and more meaningful with the same boys he's known for years in elementary school. They talk a lot about nothing, kind of like Seinfeld. It's really cute and so grown up. He had a sleepover recently, and for the first time I could tell he didn't share everything that went on, especially their talks before bed. I see that the world sees my baby boy differently as well. Other Dads will see Leo and say "Hey what's up." The restaraunt hostess won't give him a kids menu.

He's had a great baseball year in AAA. He is known to pitch well and is now a strong batter.The games seem a little bit more exciting than last year. His coaches are amazed how he can keep his composure, even when they've switched pitchers, bringing him in to "close" an inning if the bases are loaded. Must be that linear mind of his.

I still don't have the stomach for sports because I still remember how much harder everything has been for him and how far he has come. I worry when something big changes, or if it rains or if the field changes how Leo will handle it. So far so good. He has turned out to be very confident and upbeat as a player. He is known to rile up his teammates, getting them clapping and cheering when they are in a slump. Emerging leadership qualities (both his teacher and his coaches have said this more than once).

Leo is amazingly even keel throughout a garden variety day. No peaks and valleys as in the past. Ideally, "quiet time" as a break in the afternoon (on weekends) and regular snack breaks would be nice, but we are no longer owned by them. Maybe not as even throughout the day as the next kid, but very close. I am sure my kids still go to bed earlier than most (8:30pm??) because they'd certainly fall apart if we regularly kept them up after that. He can go without a break all day and stay up late and even eat late with no consequence.

We continue to be strict with food at home (GF, organic, whole foods) and with lunches, but when we are at parties, sleepovers, field trips, or at friends houses I let him partake and make his own choices. He is very compliant with his supplements so I honor his good care of himself with this. And his body can handle it which continues to amaze me. The only difference I insist upon is having a snack during a field trip - going from 8am to 1 or 1:30 with no food is just idiotic.

We determined finally through testing that another bacteria, Mycoplasma Fermentans is a causative factor to Leo's minor tics that wax and wane along with the Strep we've been addressing. This knowledge has made a big difference since we are able to target this bacteria through Rifing. I am sure Lyme is in there somewhere, but for now it as a manageable level. Perhaps we caught it early enough through Rifing. I continue to use blended homeopathy and nutrition support for detox and die-off from Rifing. A night and day difference from the winter where they got so bad.

Leo has also been a trouper when it comes to all the attention Sydney has required this past year. It hasn't been easy for him. He has an almost adult-like understanding of the big picture of chronic illness and has empathy for us and for Sydney. He could easily be the kid that you could ignore and he'd plug along doing the "right thing", his chores, his homework, etc. I appreciate his steady character and maturity in handling his irritable, emotional, and sensitive younger sister. So, I try to make an effort to spend special time with him, which doesn't always work out as the pill-pusher chief medical officer of Sydney. One day I'll make it up for him.

Globally Sydney is better but has a long way back to recovery. I can only hope that she can get there. Applying what I've learned from the Autism battlefield has helped exponentially that's for sure.

My DH is still out of work. We are hopeful that he will find employment back on the west coast away from endemic Lyme areas. I welcome bad air, bad water, and a higher cost of living with open arms. I say bring it! (Sure that may be dated slang but I just love it).

As for me, I am all about Lyme. Lyme Lyme Lyme. So many kids are not diagnosed and undertreated. Yet another category of illness that makes up the now typical fabric of the American classroom.

For "fun", a fellow Lyme mom and I took out the class directory and counted how many "regular" kids there were in 4th grade. Between the 2 of us, we knew every kid. I have a boy and she has a girl in this grade, so we really had it covered. There are about 108 kids - an average of 5 per class of 22 had no health or learning issue. I mean asthma, allergies, learning disability, ADD, ASD, OCD, diabetes, obesity, Lyme Disease, P.A.N.D.A.S. like disorder, Psychiatric disorder, Behavioral disorder, or some other IEP related issue.

Just 5. FIVE KIDS on average that had no problems. The next day I stared at this very group during the Spring Recital. There they all were, all lined up on stage singing. I started to tear up but not for the reasons most people would think. A picture of health? No, a scary, devastating picture of the future.

Living With Choices 9/10/09
This is my first post since our move. My family and I moved out of Lymeland across the country to the beautiful Pacific North West. No matter how you slice it, moving is hard even when things go as planned don't you think? My husband lost his job over the winter, so we decided it was a good time to look for jobs out of Lymeland. Fortunately, we were able to do it, and got out.

We are still adjusting to our radically different lifestyle - from living on 3 acres in the middle of the woods in a small town to a city apartment up 2 flights of stairs. I am having college flashbacks that's for sure! We hope to sell our house back east soon, and then we'll see where we stand. It gives me perspective to live like so many people do all of their lives with kids and dogs, in a much smaller living space. We really had it good living in a house where I could just open the door to let the dogs outside, the kids could come and go as they please. Now I abide by the poop schedule along with the school schedule.

As we drove away from our house for the last time it felt right. Not that I wasn't crying a bit, we all were, but it was grief just as grief is, nothing else like regret, uncertainty.

Although our lives are all harder for the time being, I am relieved that my kids are out of a Lyme endemic area. I had to face the music - my kids are SICK. My kids have weak immune systems, and will probably be this way for the rest of their lives. I have a hard time accepting this fact, something I work on each day.

A practical decision. Getting Sydney better is one thing, but then once she is "better", keeping her in the same place like a sitting duck was just too much for me. And for Leo too - he has shown positive results to some of the Lyme coinfections, but is basically asymptomatic at this point. He had the facial tics, but they are gone for the time being, and maintain him through Rifing, homeopathy, and an anti-Lyme herbal regiment. While I am ecstatic to get to the root of the tics, I have to keep up with the program to keep him healthy. A delicate balancing act - us moms all seem to have one.

Both kids continue to have naturally low Ig levels which is part of the issue with them keeping bacteria under control - strep, lyme, the coinfections like Mycoplasma, Babesia, and Bartonella. They are high with strep every time we test! The facial tics seem to be my barometer to illness for them. I'd prefer something else, but at least I finally know and the guessing game begins.

Some good news - Sydney had a major jump in improvement over the summer, counter to what I predicted happening with the toll and stress of moving. We continue to have her on 4 antibiotics along with homeopathy for support. We are SO RELIEVED.

As the ILADS doctors say (they are the DAN of Lyme docs), "There is no cure of these diseases. Antibiotics work to cut the population down to a point where the immune system can take over. This is where herbs and homeopathy come in for support." So that is what happened - we did a trial on herbs and that appears to take the credit for some of her chronic pain disappearing. For instance, her sore throat that she had for 10 months is now gone, courtesy of a modified Cowden protocol.

The kids are adjusting nicely to their new school. It is hard though, especially for Leo as a 5th grader. All these kids that have known each other forever. His new friend Kevin that he met over the summer hasn't played with him yet at recess. He is nice to him and says hi, but that's it for now. I know it hurts Leo, but he doesn't admit it. He keeps reaching out, playing with different kids in the "jock" group so far this week. For Sydney, it's so much easier as anyone with a girl knows. And she is younger, in 3rd grade.

I am hoping that what we'd done with Leo will not crumble putting him in a completely new setting on all levels. A temporary home, a new school, all new people. It was really the only truly hard thing to leave behind - knowing our old team was just minutes away if we needed them for an intervention or for tutoring . We had to weigh in on the cost/benefits - we now had to make a decision that had Sydney more in mind than Leo.

It's been heartbreaking seeing him miss his old BFF. They are very cute on the phone and on video chat. Validating on how deep of a friendship he can have. He was SO sad, and still is. I am sure it just takes time. I felt bad for his BFF too, his parents tell me he is having a hard time. A little displaced at recess, just walks around alone sometimes, not sure what to do. They were inseparable for 2 years. It's been great talking to Leo about friendships, and to teach him about long distance ones, and how you need to adjust for phone conversations. It's been a learning experience for us all. He wrote a lot of letters and emails, which seemed to inspire him and make him feel good.

Who knows where we'll end up or how the school year will end. My hope is that Leo will have a couple good friends to go to middle school with next year. I am anxiously awaiting his standardized testing scores from the spring - hopefully they'll be validating or be telling on what we need to work on. As his old clinical supervisor says "The testing is like a test for ASD. All it does is test for inferences." I know this isn't his strong suit, but hope he tests in the normal range like he did last year.

The husband is tolling away, his new job is great but overwhelming and beyond busy. It will be like this until next year. We also have one car, so public transportation is beginning to take a toll too.

For me, I am still doing the settling in errands and chores. On major medical duty - getting doctors set up, etc. I am a bit isolated in the apt, not in a neighborhood street yet making friends. But, I've met some really nice parents so far, just don't have that consistency yet. Time will tell.

September 30th, 2009 - Standardized Testing Scores from 4th Grade

The test scores came in the mail! They are not GREAT, but Leo is still in goal range for everything except math being advanced. Like last year he was behind his school's average. The good news is that he dramatically improved from last year! He learned something after all during his mediocre year.

It is so interesting as they track each year on a big spreadsheet eventually totaling 6 years of student performance. My huge fear is that he is going to drop out of "goal" eventually in writing because he is on the low end. Maybe in reading at one point too. Although I believe the standardized testing has huge flaws, it is basically my only barometer for how he is doing compared to the regular world. And my only glimpse into any future issues as we approach middle and high school. Well, another round of testing at Yale would do it, but who'd want to go through that again?

It is validating we chose the new school we did because they have the best reading/writing program in the area. I can already see how much harder he has to work in writing - making reading connections EVERY DAY in his reading log and answer questions. Just what the doctor ordered, going deeper. Why do characters behave the way they do? What are their intentions, motives, desires? Becoming the character....relating. Theory Of Mind, our old friend. This will never be a strong area, so I'm happy Leo likes his teacher and seems more content doing the work. Hopefully we can give him as much practice as possible in finding the things he needs to look for. Here are the scores:

Reading: Leo 263 /School Avg. 282 for the category.
Specific area that was below: Making reader/text connections: 3 out of a range of 6-8.

Writing: Leo 243/School Avg. 270 for the category.
Specific area below: Composing/Revising: 10 out of a range of 12-16.

Math: Leo 297/School Avg. 286.
Specific area that was below: Geometry; approximating measures: 3 out of a range of 4-6.

None of the weak areas are a surprise! It's great to know what we need to continue to work on at that there are no surprises (yet) anyway.

12 to 13 Years Old

2007-04-01T10:00:00.000-07:00

Boy has time flown by. Here we are sitting in 2011! I know, my blog has a different date. I manipulate the date so I can put posts in a certain order.

I have been in the "autism business" for 10 years now since Leo was formally diagnosed by Yale when he was 24 months old. Well, technically the autism is gone but we are still doing the "chronic illness business" with his manageable regiment and my daughter's huge and complicated one!

Leo has made some really good friends so far in 6th grade, his first year of middle school. Last night, he happily played his sax during the winter band concert. So cute! He and the 2 other boys that play sax "owned" it last night. Memories of hypotonia in his mouth muscles that compounded his early speech delay flittered quickly into my mind as he blew on his instrument with such joy. How could it be the same boy?

Leo earned all A's at this point except for a B in science. He is doing very well managing his schedule and his life to and from classes, from baseball and religious school.

Leo has been very happy lately, I can see he is content with his life and confident in what he can do. He is also very proud of his accomplishments.

Healthwise he's been doing great. His current regiment for Lyme disease really seems to be the ticket for him - his tics remain absent, and his once-in-a-while headache or fatigue has greatly reduced to a couple days per month. He is eating like a horse these days and also sleeping in more, my guess that puberty is ramping up. Yikes!

A great way to start the new year that is for sure. I hope everyone out there is having a good one so far. That is, if anyone is "listening!" Say hi, would love to hear from old friends or new ones. haha Ashley

11 to 12

2007-04-01T09:59:00.000-07:00

January 15th, 2010

This is my first post of the new year. So much newness! A new house, school, community. And Leo is 11!

The kids LOVE it here, although they miss their friends. My biggest concern, of COURSE, was my big boy. Would I undo all that we've done? We moved largely to be out of a tick endemic area. Which kid is most important? Upsetting the apple cart vs. having a cleaner environment for my daughter?

Fortunately he seems to be thriving, also demonstrating there are no holes in his programming and that his recovery is real. Out of his comfort zone of the same kids, school, neighborhood, and community. It amazes me how he has the confidence and adaptive skills to adjust to EVERYTHING being new.

The cleaner environment seems to help HIM in addition to Sydney, as he does struggle with his bacterial load, including a lyme co-infection Mycoplasma fermentans. He is asymptomatic about 95% of the time (tic-free, headache free).

Leo continues to love sports, loves playing basketball and baseball. Still amazes me he can do it and CHOOSES it after he had such a hypersensitivity in his face for everything, let alone flying objects. He is actually good at it! And again, with completely different kids in a different league/culture. Another adaptation.

Leo had a very successful class birthday party (just the boys) at our local gym. I can't believe he is 11 and that puberty is around the corner. Our next milestone. Grandma visited and so his birthday celebration was big in spite of being in transition.

We are still in LYME HELL with my 8 yr old daughter, but she has made progress this past year. We are beginning year 2 of her treatment. My goal is that she is pain-free by year 3 - seems to be a fair marker. So, I spend all day doing the things you know i am doing as a parent with a special needs child.

The kids play every day with the neighbor kids in our new cul de sac. It's so surreal to me, how happy they are running around, knocking on doors. Going back and forth between houses. A really really nice group of kids (so far, I am in the honeymoon phase!)

The kids have their own room, and as you can imagine they relish their new TURF. It's very cute how they are coming into their own as they mature.

I unpacked my homeopathic school books - I hope to start studying as things calm down settling into the new house. It'll wax and wane as Sydney's needs vary.

All in all I am happy with the new year, and hopeful that Leo will continue to thrive and that Sydney continues making progress toward recovery.

September 24th, 2010 (2 weeks into 6th grade, almost 12 years old)

So far Leo is doing amazingly well in his first year of middle school. I recall being so miserable this age! He is relaxed and confident, and at this point really likes all of his teachers, especially his homeroom. His personality immediately matured once school started, almost as if he was trying on this older persona to fit the bill. He really seemed to think he was a big shot.

He knows several kids in his class from elementary school (there are 5 feeder schools), and is now mentioning a boy from a different elementary school that he is "starting to become friends with." Yeah! His teachers seem really motivated and youthful and also parents themselves. Always a help!

Right away Leo memorized his schedule, didn't need to look at it after day one. He is amazing with directions and location, he never got lost. He seemed unfazed by having to switch classes.

The bus was our biggest concern - Leo did NOT like how long the ride was, and how it drove 20 miles an hour and stopped so many times. He had a huge headache the first couple days but now he's adjusted. He has learned how to move around to sit with friends as people get off, and keep himself entertained for the almost hour ride home. I said to myself that I'd give him 2 weeks to adjust, and if he still didn't like it I'd drive him. After a few days he loves it, a big social time for the kids. Recess and lunch is so short, the only real time the neighborhood kids can connect.

I loved helping him put together his multiple class binder with tabs and all of his grownup supplies. No more crayons! He loves that he needs a scientific calculator and is proud that he is in advanced math. Thankfully the school emphasizes organization - he writes in all of his assignments in a calendar and each teacher has a web page with links and the homework and even grades. Designed just for me and also Leo.

The math teacher is a classic math nerd, and seems to be one of our people. She is really dedicated and encourages kids to hang out in her class at lunch and ask for help. Leo really likes her, so I am happy that he can have fun with math again, his favorite subject and also his best strength.

Leo prefers to take lunch, although he is healthy enough to eat cafeteria food. He doesn't like a big production since there are always lines and cuts out of table time. He plays some kind of sport at lunch and that too is organized, so he is having fun.

Class sizes are big (28 in most classes, up to 50 for band and technology). We are looking at this year as a placeholder to see how he does. Will he thrive in large classes with so much independence? He qualifies for the "gifted" program (I really hate that word since all kids are gifted in different ways), so we can always look for those programs for next year if needed. Always hard to know what to do, but at least we are lucky to have choices. So, we went with a social decision - to have him go with the neighbor kids.

I do miss the emphasis on education from back east. There is less money per student here and so the schools are not as good as what we were used to. I do want him to have choices for college and really have a solid base to fall back on. I didn't, and had to take several remedial courses to be prepared for certain college courses. But I am getting too ahead of myself!

It's been a year since we moved from New England to the beautiful North West. Leo has friends, is identified still under the "jock" group. He has no best friend, just a few good friends. His best friend from back east visited this summer. They had a blast! We were so impressed how Leo was able to maintain a long-distance friendship at 11 years old. Phone and Skype. A true deep and lasting friendship.

Leo continues to play baseball, his first love, but is enjoying his Fantasy Football League and watching ESPN with his dad. He has also taken up hiking and camping with his dad, such a nature lover. He now walks with me on weekends up the hills in our neighborhood - a real workout for me!

Health wise, Leo is doing well. We continue to eat organic whole foods whenever possible, and eat gluten and sugar on occasion, usually for social reasons or going out to dinner. Unfortunately, Leo began having symptoms of Lyme disease back in February, so we started him on an anti-microbial regiment that includes antibiotics, and herbs/homeopathics for support. We are happy to be living out of Lyme Land, and are hopeful that by next year the microbes will be under control, including strep and mold. In some ways, he is no different than any other "normal" kid out there physically, except that he takes a boat load of pills.

I have seen shades of pre-adolescence, and recently Leo asked me to buy him deodorant. He is growing up! I no longer feel as anxious as I used to feel about going through puberty. I am confident he will maintain his functioning level, barring anything unusual happen with his Lyme. He has barely any symptoms - occasional facial tics that come and go when he is getting sick or nervous, or going through a die-off cycle with the Lyme.

And speaking of Lyme, I heard Leo recently tell his friend about his sister's condition (she has Chronic Lyme and was very very ill, but is now pain-free and doing well). Leo said "Can you imagine, having a headache that never goes away for 2 years?" Not to mention all her other 17 symptoms she had of pain. His empathy and deep understand of what our family goes through and had to go through really moved me. Such empathy, in a kid that used to have autism!

Sydney, Leo's 9 year old sister is doing very well. She is now pain-free, losing all her chronic symptoms this summer. Pretty exciting! She does get flares each week, but they are minor, and are only one or two symptoms that last about 4 to 5 hours. Her pathogen load is very low, and we feel we are close to remission. She will continue on her Chronic Lyme regiment for at least one more year. Lucky for us, we have great doctors that we see each month and she is steadily improving. She plays soccer and has 4 dance classes a week, not to mention lots of play dates and playing with neighborhood kids. She is really enjoying her newly found endurance, and is rebuilding her strength and stamina. She is free from pain, and we are all overjoyed.

Lastly, I should mention we had a great end of elementary school. I never got a chance to post about it. I was a blubbering mess as usual. I couldn't stop thinking about how much he has gone through, and now today he lives a normal life and has just "graduated" elementary school. He is in line with the other kids, laughing and joking around, high-fiving the teachers. So much pain and suffering, so much chaos long ago. Incredible.

Leo did get a little homesick for his old school the last couple weeks, and regretted not being able to graduate with his friends. He was positive but realistic about graduating with kids he didn't know every well. He prefers our current life, and is very wise about the dangers of Lyme and his weak immune system. He had a great summer - lots of site-seeing and hosting friends and family. Their turn to visit us instead of visa-versa. He loves having his own room and enjoys a more urban experience.

I make sure to tell him how much I love him and how proud of him every day. This is usually right before he waves me away while he meets up with the neighbor boy to go to the bus in the morning.

Telling Leo He Had Autism

2007-04-01T08:16:00.000-07:00

I have gone over in my mind a thousand times what I would say. What came out of my mouth was pretty close to that. It went really well! But first, here's the backstory.

My husband and I made the decision to wait until Leo asked if their was a name for his issues, or if it seemed he needed to know for some reason. I anticipated the topic would come up when he noticed a classmate with Down Syndrome looked like his cousin. Leo could relate to all the therapies and issues his cousin had. His cousin’s issues had a name, did his as well? But, he didn’t ask.

We wanted Leo to be in a good place and to be able to handle any reservations he may have once he learned of the label. He knew all about discrimination, comparing it to racial issues. He also witnessed classmates making fun of children with special needs. “Andrea only wants to play baby games. It’s so annoying!” they said one day. He associated himself with those children, but instinct told him to not share that he once had the same issues too.

In my mind, I wanted him to know by middle or high school. We didn’t anticipate any reservations -- he doesn’t read the media or hear discriminatory remarks using the word autism -- yet. Knowing beforehand and building upon that seemed ideal.

He has always been comfortable with the fact that he grew up as a “Help Needed” child, the term they used in elementary school. He remembers most of his therapists and some of his “special” interests and behaviors, like stimming on wheels and buses.

Like a child that is adopted, we knew this conversation would take place many times over the years, in layers that were age appropriate.

So here is what happened! The kids and I were invited to speak at a Lyme seminar. Leo was very excited about this -- he loves to talk in front of people. I thought about it, and realized that we couldn’t do it because our privacy would be at risk. The seminar was nearby. Not everyone is thrilled with the content of my blogs, which is one of the reasons why I have used an alias. So, I realized I needed to tell him why.

On our way pick up a few things at a convenience store. I park, and we sit and talk in the parking lot in front of the building.

Mom: “So Leo, I decided that we can’t do that Lyme seminar.”

Leo: “Why not?”

Mom: “Well, I realized that there is one thing you don’t know about yourself. Something about when you had all those problems as a little guy.”

Leo:”Okay, what?”

Mom: “Well, all of your problems actually have a name. You had an Autism Spectrum Disorder. It’s a category of behaviors, learning and health problems.” There are many different kinds, and you had the one called Pervasive Developmental Disorder (PDD). It is a mild version.

Leo: “So like how my Lyme is milder and different than Sydney’s?”

Mom: “Right. Your friends like Joey have Autism, and some of your other friends like Nate have the same kind like you, PDD.

Because of all your hard work, you were able to get better and not have it anymore. You are still the same person, just wired differently. Some things remain easier and harder for you. For example, drawing and visual/spacial stuff is challenging for you even though you have tested average for those. Sometimes it takes you a little longer to notice inferences. You have always known that about yourself, right? You remember your Helper at school, all the speech you had, and the Helpers that played with you at our old house?”

Leo: “Yeah, yeah. Of course I remember. But I was really smart, right?”

Mom: “Absolutely, and you still are. Your brain is unique and because of that you have incredible skills, like your memory and how good you are at math. That is why Yale asked you back, so they could learn from you. You are like a rock star to them. That’s what they do, they study these Autism Spectrum Disorders since it’s now an epidemic. Very few kids recover like you have.

Leo:”Wow. So cool!”

Mom: “So, because people discriminate, we only share the name with certain people we can trust.

Leo:”Like Harrison (our neighbor) doesn’t tell everyone about his ADHD and Dyslexia?”

Mom:”Right. For the same reasons. Autism is even harder to understand, so people have a bad stereotype of it in their minds. I’ve studied it over the years, so I have become an expert in a way. I help people on my website, and as you know I am writing a book about what happened with you. People have been inspired by your recovery and have learned from our experience.”

Leo: “So, the book is ONLY about me, and not Sydney? Awesome! So, am I like, famous?”

Mom: “Kind of, I guess. In a way, to a group of moms with kids that have an autism spectrum disorder. Don’t use the book against your sister, okay? She is in the book a little bit. I have learned a lot from her too. We both have.”

Leo:”Look! A cheese special (he points at a sign on the window for a sale).”

Mom:”Cool. So do you have any questions?”

Leo:”Mom, it’s just a word.”

Another Side of Autism

2007-04-01T08:11:00.000-07:00

ANOTHER SIDE OF AUTISM – by Ashley Morgan.

Note: This is a longer draft version of the article published in The Autism
Asperger's Digest, Jan/Feb'08. I originally wrote this late summer '07

It’s been four years since I’ve managed a full-time therapy schedule for my 8 ½ yr old son. Leo is in 3rd grade at the regular public elementary school, just as he always has since Kindergarten, with no aide or therapy. Amazingly, I can say my son is no longer disabled by Autism.

I am not here to gloat or share how great I am. Or that we’ve done something better than any other Autism parent out there. What we’ve done to help our son isn’t unique from what many families have done. But since each child on the Spectrum is their own special blend, the painful truth is not all children make dramatic gains with the same viable therapies we have today.

I am here to share some good news for a change, many do reach a functioning level considered ‘normal’ to the layman. Our outcome – recovery, stabilization, homeostasis, can happen. Does happen. And this is what it’s like for us. I believe every child deserves to reach their potential, whatever God has intended for them, regardless of their parking spot on the Spectrum. Each person with Autism and their family is different, and these results demonstrate how Autism is no longer a hopeless untreatable disability.

A Camp Day in July 2007
I sit back in my lawn chair at the neighborhood pool watching my son jump with abandon into the deep end. He surfaces with a spongy ball and a big smile, and with determination throws it forcibly to one of three other boys that are playing catch. One is his closest friend since Kindergarten. The others are friends from his regular local elementary school. Kid sister is nearby in the shallow end playing mermaids with her friends. Dad will be joining us here after work with Mexican take-out for dinner.

I am dry, in regular clothes, by the pool, with an unread magazine in my lap. I could glance at it if I want to, my kids are strong swimmers now, but I enjoy watching. I find it peaceful to observe life as it occurs right now in this moment. I am mindful of this daily gift I have received. I am the mother of a happy child that has choices. Seven years ago my son was diagnosed with PDD-NOS. And let me tell you, ‘happy’ wasn’t a word we used to describe Leo.

We agonized over our ‘difficult’ baby until he was diagnosed just before his second birthday with PDD-NOS. We lived the life of an Autism family up until the summer before Kindergarten began, at 5 ½. Life as a ‘normal’ child, whatever that is, became our very different life. Leo’s Kindergarten, 1st, 2nd, and current 3rd grade teachers did/do not know he used to have
an IEP or that he has an Autism diagnosis. Nor do any of his peers or their parents. We kept this a secret so Leo wouldn’t be discriminated against or live with any stigma that would affect his choices. Leo may have Autism, but he is no longer disabled by it.

Earlier, Leo was picked up at nature camp by a mom whom he briefly met before we started carpooling. Leo wasn’t concerned with what exact time she’d arrive or even the kind of car she drove. He’s been to this camp before, but he attended without knowing any of the children. By the second day, he already belonged to a little group of three boys. He enthusiastically
tells me about these new friends during dinner. He’s also become friendly with the carpool boy, playing basketball games, X-Box, or Webkinz almost every day after camp. I listen in to their conversation on the drive home “Hey, did you see the baby rats? Did you see those animal tracks? I saw you canoeing today.” They talk on and on about school, speculating about
what teacher they’ll get in the Fall.

While the kids were at camp, I checked my email and started packing for our upcoming trip to see family. Just a few emails; scheduling fall activities and coordinating play dates for after our trip. I am happy that Leo gets to see a few of his friends over the summer. The phone was quiet, just a call from my sister. I finished organizing the kids’ school files and my PTA stuff
from this recently ended year so I can move them into the basement. I think about all the time I’ve already spent at their school, for speech, OT, and PT therapies, and IEP meetings, most of it before Leo even attended as a student.

Leo Before

I was really excited about my new little bundle of joy, our new apartment Ianthe big city, and the new family that my husband and I created. A family that was truly mine. When Leo began having small tremors following nursing at 2 months old, I was very nervous. The pediatrician followed by a neurologist both dismissed them as nothing, and told me to go on with life and if things worsen, to let them know. Things didn’t worsen, but they stayed the same. That was bad enough. I dreaded the end of a feeding, looking down for any stir and followed by the familiar jittery movements. As tiny as they were, they seemed so huge that they took up the room.

Do nothing? There words didn’t ring true to me. It didn’t feel right that a baby could do this with nothing wrong. I searched online and at the library and got nothing. Everyone told me to believe the doctors. This is the Big Apple after all. Who am I, an insecure first-time mom, to question them? I quickly learned that moms don’t know anything. My pure joy of being a mom
began to fade as chronic anxiety and depression took over.

By the time Leo was 4 months, severe separation anxiety kicked in. I couldn’t put him down for a second. Literally. I was so distressed. What was I thinking? I can’t do this, this whole mom thing. I must be doing something wrong and I have to get to the bottom of it. Leo had to be constantly held, he nursed EVERY hour just one side, and I couldn’t leave him in the care of anyone but my husband.

We babysat my friend’s baby that was just a few days older with no hiccups. This was the big plan, trading date nights so us new parents can get out. The baby was sweet, calm, and aloud me to put him down under the play mat. Adorable. We took lots of pictures of Leo’s first friend.

When it was our turn for a night out, I was filled with anxiety. I knew this may not work, but I had to try. Everyone told that we just needed practice. That’s all, just practice. The family came over, excited about the prospect of extra responsibility. I didn’t know what to do. I felt like a deer in the headlights. My screaming infant was so wound up he threw up. Embarrassed, I let my new mommy friend go home, pretending that we’d try another time. My hope for a new social circle went out that door too. I hung up my newly purchased post-pregnancy duds in the closet, knowing I may not see those puppies for a while. I knew something was different about my son, and I hoped that this ‘high maintenance’ stuff would eventually fade. No one
seemed concerned. “All babies are different, everything is normal for a baby” is what I was told.

I watched while other moms seemed to move forward into the next phase, life with a baby. I stayed home far more than I ever expected with my baby I couldn’t leave. Leo had a sleep schedule that began with him waking at noon and going to bed at midnight. I tried tinkering with this, but regardless of what cruel things people suggested I do with a 4 month old, I stuck with
my gut. Half the day was over for my new mommy friends before I left my apartment. I looked forward to my weekly ‘play dates’ with the other moms until I got a comment about Leo’s lack of expression. I got very upset but kept it to myself. The pediatrician continued to tell me that everything was normal, even when I told him I was concerned about his head control. Of
course, we discovered later Leo had hypotonia and overall weakness.

I was so confused. What the hell is going on?

In my new house in the suburbs, the isolation continued. Failed attempts with babysitters kept me at home with Leo rather than going back to work. One babysitter worked out if I left just for an hour. She was getting a degree in Early Childhood and wasn’t concerned either.

As a toddler, every day was the same for me. I’d sit on the floor and observe my son, chronically perplexed by his ‘play’. It sort of looked ‘normal’ to me. He did have a toy in his hand, he just did the same thing over and over with it (stimming). I had no experience with children, and Leo was the first child on both sides of our families. Alone, I’d stare and stare, wondering what else I could do to figure this out. He didn’t seem sick, he seemed content. As long as he had his wheels to spin that is. As long as he had match box cars in both hands everywhere he went or else he’d tantrum and look like he was going to collapse with fright. As long as he could line up his yogurt cups and baby food jars at breakfast. I was unaware that this thing was sneaking up on me and taking over our lives (the stimming).

Leo would wake up in the morning, climb down the stairs to our play room,and turn over all the cars and trucks I had neatly put away, and spin the wheels while staring at them. The entire day. I’d ask my new mommy friends what they thought, and they said ‘boys are obsessed with cars and trucks’. I’d ask everyone, my pediatrician, my family, my babysitter, and I
got the same answer, but again it didn’t ring true. I looked again online and scoured my baby books but found nothing describing what we were going through. I found out that one of the moms was a child psychologist. I came to the park knowing she’d be there so I could casually quiz her about child development. Leo was with me, and she said the stuff I’m describing is all normal stuff. “Language delays are typical for boys”, she’d say.

Time seemed to stand still for us, while Leo’s body just got bigger. Dark circles became prominent, fatigue and spaciness set in. He just didn’t look right. I started to think that it wasn’t my lack of parenting abilities. He seemed so frustrated because he couldn’t communicate. He acted so helpless and clueless most of the time. Sometimes just deflated. Leo had no interest in any toys other than something he could spin or line up. Only content on my lap at play dates, he’d focus on a playmate’s truck or other spinning toy rather than the other child. He’d look right through people. I had no choice but to give up play dates and Mommy and Me classes, because neither of us ever had fun.

He passed an ENT/audiologist evaluation. I knew that he would, but I knew I had to get it done to hone in on what it was.

We eventually received services from our state’s Early Intervention (EI) program. A language delay so he got a special ed play mate. Not even a Speech Pathologist. Oh, and later I found out they knew right away he had an ASD, but didn’t tell me because they were not doctors. He was quite ‘poster boy’ at that time. I went ahead and got pregnant with my daughter. Something I would’ve waited to do until I learned more about what I was getting into.

I eventually self-diagnosed my son and began my search for a diagnosis. New to the area with no family locally, I was desperate for support and answers. When I asked EI for names of other parents in the area that I could talk to, they told me that I was the only family with Autism. And I took that at face value. In reality, there were many children which of course I met later on. In fact, two in my neighborhood.

My pediatrician didn’t believe my son had PDD-NOS, and challenged me to “prove it” by making a video that, in his arrogance, I doubt he ever watched. After denying my 11th round of antibiotics, I switched pediatricians and began scouring the earth for therapy that seemed to fit Leo. Ignoring the babysitter, friends, pediatricians, and EI I spent all my ‘free’ time networking
in nearby towns for families, therapists, and just ideas. I was desperate for help, and nothing seemed to fit. My son had occasional eye contact, was affectionate, seemed to understand most of what we said to him. Leo wasn’t destructive, and mostly compliant as long as his rules applied. I had no idea I was under my giant silent toddler’s thumb.

After doing a little research, I asked EI about ABA. They told me ABA wasfor lower functioning kids, and in fact they didn’t approve of it for most kids. This is what my school district said when he turned 3. All the district would
offer was a special ed classroom. After observing, I knew it wasn’t that place for Leo. He didn’t fit anywhere, but even less in that place. Glorified babysitting. I had no one to ask what to do. No one had an opinion outside of the district. Yale gave me deficits, and I read them over and over until I could recite them. Nothing I could find seemed to address them. I didn’t sleep (really) for about 2 months, finally deciding to place him in a local private regular preschool instead of the district’s preschool. No one I knew did that. Was this really the right thing to do? All my friend’s kids were in special programs, why not Leo?

I went along with the district’s opinion of ABA, quietly taking their ½ hour a week of speech as Leo’s program for Autism. I quietly ‘pounded the pavement’ looking for therapy that would address the deficits that Yale diligently detailed out for us. I thought this whole thing was insanity, schools not helping children with a major disability. I believed there HAD to be people and therapists that would understand my son and help him. I continued to search and search, making connections in my ‘free’ time. At the time, there were no support groups for Autism in my area. Good thing Ihad a small group of Autism moms that literally saved me.

I was a strange experience doing something entirely different than the other moms in my group. I went rogue, with no feedback from anyone that I could be doing the right thing. What worked for them didn’t seem right for Leo, so
I stuck to my guns and kept plugging away, never taking second best. We did all organic and whole foods whenever possible. We mainstreamed him right off the bat. Something I didn’t know would work. He seemed ‘fine’ according to the speech pathologist’s observation. He’d tap and chant on occasion, but nothing too disruptive to get him kicked out.

It slowly dawned on me that taking ownership of my son’s wellness worked. With a little success under my belt, I revisited ABA and finally found a different ABA provider, one that understood Leo completely. Within 5 minutes of meeting them, I knew I was finally home. Sure it took approximately 1 ½ years, but who’s counting?

ABA-NET eventually became the cornerstone to ‘finishing out’ my son’s social deficits and no longer needing therapy or even a shadow at school. After countless hours of networking, I finally hit the jackpot – a mom of a recovered older boy had a name. A name I’d heard of before. I hadn’t heard of recovery before and frankly, I thought she was crazy at first. But I
listened very hard, and I believed her. I knew now to only believe other moms. I also heard her describe her son that seemed like mine. I found the name in my notes, a nice cross-reference, totalling 3 recommendations. This was good timing, as at that point, I was very pregnant and concerned about my next child, and what in the world was I going to do with an infant
and a toddler on the spectrum?

I quickly learned about perspective taking, Theory Of Mind, Executive Functioning, Cause and Effect, all of these things that I had no name for crystallized. They were names of detailed programs that, after prerequisite skills were mastered, were Leo’s ABA program. I was beyond excited.

After that, I got angry. Angry that I’d been deceived by the school district. Angry that I had to fight for the right thing. I was angry that my son lived in a chaotic world, and I wouldn’t stop until I found a way to make him happy. I was angry that most people I spoke with didn’t know about the therapy we were doing. And the state of Autism programs? Pure injustice. The worst possible. Cheating disabled children? You’d think I was reading a fairy tale. Knowing ASD children were walking around with no true support or very little support drove me crazy.

The school district continued to force the sp. ed. class down my throat any chance they got. A hostile relationship after I got educated. It was also hostile at the elementary school, the place where Leo got OT and speech since we weren’t part of the special ed program. They wouldn’t give me even a chair to sit on while I waited for Leo in the hallway while he was in speech. I had to keep my infant quiet to boot. Sitting on the floor, I waited there in case Leo needed to use the bathroom. The speech pathologist couldn’t, by law, accompany Leo, a 3 year old, into the restroom. Leo also had to be weaned off my lap, the place he received a lot of his early services. Otherwise, he couldn’t concentrate.

The noise from the buses, the gym, and the halls set him off on countless occasions. Once he was swallowed up by a group of basketball players that didn’t see us. Leo had a panic attack, and we lost days of therapy because of recovery time.

Leo had other issues like most of our kids. He had a fear of toilets and plumbing in general. Every bathroom visit was excruciating. This would interfere in just about everything, including the therapy at the school mentioned above. He hated small rooms and rooms with doors closed. He’d limp on purpose on one leg while walking, slamming his feet down hard to
get input. He’d chant, bang his hands, tap his fingers, whenever possible.

I think about that intense year of aquatic OT when he was little. The one hour of driving each way, the expense, all while taking care of Leo’s little sister. Our goal: The ultimate, a swim-safe child. This seemed impossible since the initial goals were to address sensory defensiveness, vestibular and proprioceptive challenges, fear of dying, hyposensitivity in legs, hypotonia in his arms and upper back. I was raised in Southern California on the beach, so I always had envisioned sharing my love of the ocean with my children. I think about Leo’s anxiety the night before each swim “lesson”, how he’d worry himself sick, rarely sleeping.

Today Leo has choices. He chooses to swim with his friends. We can go to the beach. At nature camp, he learned to wade and canoe, not concerned that he can’t see what’s under the water. Pretty surreal.

I think about how any change in routine would cause anxiety. Being 1 minute late would bring him to tears. I think about Leo’s intense separation anxiety that made it impossible to place him in the care of others. Being around other children would cause anxiety.

What does Leo think about all of this? His past?
Leo knows everything there is to know about his disability, but without the label. We focus on what he’s accomplished, and where we’ll need to continue. Mom has stuff to work on. So does Dad and kid sister. When he wants to know the Label, we’ll tell him. When this happens we will also have the opportunity to tell him about the other children. This past year, his classmates included two other children on the spectrum as well as a couple more IEPs for various issues. I continue to facilitate those friendships. I speculate they’ll need each other in the future, maybe as teens.

We recently had many conversations about his cousin that has Down Syndrome. I thought he might ask about himself. But no cigar. He really "got it" about his cousin whom he loves so much. He even empathetically mentioned how his aunt and uncle must have a hard life. If he only knew. During our trip to see family, our close friend’s dog died. A dog I’ve known
longer than I’ve been married. Again, Leo really “got it”, and didn’t complain when we had to postpone our visit to see them. Although he barely knew this dog, we have dogs, and he cried for their loss. He also thought it was amazing that we knew this dog as a puppy before his father and I were married. Love that perspective taking, appreciation of history, his sense of time.

Leo Today
Leo sleeps with his cherished Webkinz most nights. The unique part, he puts them in alphabetical order by name. He’s named them all real peoplenames, like Tom and Derek. He says he doesn't like to come up with the name for stuffed animals. He likes it when they come with one on the tag.

During baseball, he prefers to have the same position, always wanting 1st base. He collects Geronimo Stilton books (loves reading them), enjoys baseball games right to the end never tiring, music concerts, and parades. His favorite thing to do is go to the neighborhood pool. Not for just the swimming, but for the beach volleyball and playground.

Recently, we’ve been playing Old Maid as a family. He doesn’t have a good poker face, but has good strategy, noticing his opponents’ habits, and triesto take advantage. Love that Theory Of Mind working. He notices unique license plates and enjoys geography and history facts. Leo is a quick learner on the piano and music theory in general. No surprises there!

He’s very genuine, fair, has a great sense of humor, and is the sweetest, gentlest guy. Especially when you look at how big he is for his age. We talked a lot about homeless people, the causes, what it’s like for them, since we observed so many along the coast during our trip. His first response, "We should invite them home with us and help them.”

I hold a common fear that many parents have, that our children will somehow get taken advantage of because of their innocence, their naivety. While waiting for a flight at the airport for that family trip, Leo’s social abilities were put to the test. A questionable character in the waiting area began talking to Leo, asking him personal questions. He protected himself. When asked what town he lived in, he said “I forgot”. He avoided eye contact with the man while boarding the plane by taking advantage of a nearby billboard, pretending to read about the arriving flights. He told me later that right away
the guy seemed “creepy”. And he was right.

I will always monitor Leo’s development for Autism support, but so far he's looking good. He’s an above average student that’s very outgoing and social. He’s well-liked by his friends and their parents. I get compliments regularly about how friendly and social he is. If they only knew why he’s so comfortable talking to adults (because for years that’s who his playmates were!) We continue to monitor...

Leo is a 3rd grader, that marker year, so I realistically know there may be challenges. I'm ready for whatever it is. His residual issues lie in the executive functioning area, which manifests for him by having trouble with monitoring his external thoughts. So, about once a day he'll "talk out of turn". It can be disruptive on occasion, but as a whole, he doesn’t affect the classroom more than any other child’s unique contributions. The good news is that we see slow improvement. He just has to stay present and conscious to his thoughts - a lot of work on his part.

We continue to monitor his health, as his unique GI and immune systems need help, and with each year that passes, he’s healthier and healthier. That's all that's "left" and I'm grateful for it.

Leo enjoys carpooling to baseball with his friends, doing sports trivia in thecar on the way. It’s still so unreal to me. He goes with another mom in another car! And he’s okay.

Mom Today
Am I an Autism parent? Yes. Has my life changed in 4 years? Yes and No. I don't have an impossibly giant schedule to manage and implement. I have similar fears and concerns, but they exist at a lower volume in my mind. I occasionally experience PTSS symptoms, such as when it’s time for a parent/teacher conference, or when we have a very ‘off” spectrumy day. I continue to manage chronic anxiety. We are still in debt although we are much better off financially than we once were.

Rollercoaster days are few and far between. Those ‘off’ days are hard, as I’m not used to them like I once was. I’m grateful that I’m not living in crisis mode anymore, so these days no longer do me in.

I’m still angry though. Angry that I have more company, meaning more and more people I KNOW and more people I meet have Autism. I’m angry that the issues at hand years ago are still the same today.

Unlike what most people think, the transition leaving the special ed world was hard. We miss the therapists that were like family and are no longer part of the fabric of our daily lives. No more pages of diligently detailed notes about Leo’s day. Survivor guilt and social displacement for me werea challenge.

The jungle safari I used to live in is now an ordinary landscape. My hidden identity as an Autism mom no longer feels awkward. I'm now at peace being responsible for my family's wellness. I still point fingers toward the same places, but it just doesn't get to me anymore. Autism has given me real, life-long friends, and helped me “clean my own house”. We live more healthfully, and my relationships with family and friends are more meaningful. I rejoice that Autism has ‘tipped’ (The Tipping Point by Malcolm MacDowell) into mainstream media, and people are talking more and more about it. For instance, Oprah, The View, and the recent rampage of Jenny McCarthy.

Autism is part of who Leo is, and I love him and accept all of him as a whole. I don’t separate the autism from non-autism parts. Sometimes it’s fun to attach certain aspects of his personality to autism. But mostly, I just don’t care. I use our experience and Leo’s unique wiring as a learning tool. I regularly remind both my children about what Leo’s deficits USED to be and now LOOK. He can do anything. There are no barriers to his potential, and our reward is his success.

Advice
As the mom of an older child, I do have some advice I’d like to pass on to newly diagnosed parents or parents at a crossroads: Never ever give up on your child or underestimate their capabilities. Treat them as you would anyone else, expect as much as anyone else, as much as you can. Find the root of an issue and address that, rather than the symptom of an issue. It’s often harder to execute, but saves a lot of time and frustration in the long run. Intensive intervention at ANY age can give your child the best shot atreaching their potential. Just because your child was diagnosed later makes no difference. Go for it! Assess both the biomedical and therapeutic options regardless of what anyone says. There is no rhyme or reason to what blend of therapies will be optimal for your unique child.

Trust your instincts – you will always know what is best for your child. Never underestimate yourself. We are all Uber-Moms and we can do anything.

Here are my unanswered questions from 2004, the time of my previous article:

1) Why are we parents having children with impaired immune systems, which, cannot discriminate between actual food and real viruses and bacteria?

2) Why are we parents having children with impaired GI systems, which, cannot efficiently assimilate food and flush out toxins?

3) Why aren’t we doing comparison studies between healthy children and adults? How do their genes, lifestyle, and GI/Immune systems differ? Whatcan we learn from them? What are they doing and NOT doing? 4) Why hasn’t the government figured out that it’s more economical to educate thesechildren appropriately?

Anonymity - Why Do Many Parents Want It?

2007-04-01T08:10:00.000-07:00

Anonymity – Why do many parents want it?

written 3/20/06

Many of us are fortunate enough to choose anonymity when their child is mainstreamed. They can pull it off, if executed carefully and the parent is paranoid and OCD! These days, getting pulled out for services is common in classrooms. An appointed shadow may not be obvious as to what child they are helping. Some mainstreamed children may no longer need
an aide. Their issues may not be negative behaviors that are obvious or affect others. Because of these unique factors, these children do not stand out, and the option of living label-free is a reality.

Some parents, like myself, choose to ‘hide’ the label from public knowledge. I have chosen this route for my son and two years later it’s still the best option for us. Other parents haven’t kept Leo and his friends from having play dates. It's not the kids, but the typical parents being the obstacle. Educators haven’t treated Leo differently in the classroom. When he
acts up, he gets in trouble. He is accountable for his actions, judged as an individual on his own merit. Expectations for Leo are just as high as any other child in his 1st grade class. Expectations for Leo’s academics, conduct, personal development, kids, based only on the choices of the other children, and not their parents interference. He can play any sport he chooses. Leo occasionally has issues riding the bus like any kid.

The bar continues to be high for Leo because his teacher is in the dark about his history. That bar helped him succeed and fly through his programs when he was little. I hear how kind, sophisticated, funny, and social Leo is. I know these comments are real, not contrived or forced by parents thinking they must say something positive. Like any parent, we wanted to provide Leo with as many choices as possible.

Many high functioning kids blend in, or because there are other excuses that fit the bill for anything unusual. These excuses can be speech delays, low tone, and other innocuous issues that are deemed acceptable. The “diet” can be explained by your garden variety food allergies excuses.

In the typical world, most people including educators, know very little about ASD, other disabilities, and various learning styles. To most, Autism is a hopeless untreatable disability. Once the word Autism is associated with a child, the stereotype from the 70’s still prevails. THEY COULDN'T BE MORE WRONG. A one-size-fits-all description of a significant child stuck in their own world with nothing to offer? Equating Autism with no emotion, no connection, nothing meaningful. People don’t realize that this spectrum is a spectrum. And even those that ARE significant, their percentage is small.

And indeed, these significant children may ALSO be funny, affectionate, adorable, a big brother, a son, or a grandson. He may be smart, great at basketball, and loves animals. These kids are individuals, not just the label. Some may be a total handful, while others may be eager to please and very manageable. ALL children on the spectrum are equal and are individuals by their own right. They ALL have something to offer.

Parents can’t understand that ASD kids are just kids, and their friendship is of equal value to any typical child. Unfortunately, ignorance, fear, and discrimination causes parents to avoid ASD kids. They fear ASD kids will affect their kids in a negative way.

So why not just tell everyone and explain Autism to each and every parent and educator in hopes of setting them straight and winning them over?

First, we are outnumbered. 12 out of every 100 school aged kids has an IEP for a
variety of reasons. Although this is high, majority rules! Our society and their ideals rule. I’ll tirelessly try to win over my mother-in-law, an old friend, and the few people that we chose to let in on purpose or by accident. As we all know, this is a very complex disorder. It can’t be explained in one phone call, one paragraph. It’s something that can only be understood
over time. After all, this disability is about patterns! I can barely get through my laundry, the driving, the cooking, and the 1 hour per day I spend on this site, let alone find time to talk to parents and teachers for hours day after day. In a twisted way, I wished the numbers went the opposite way. It would make our lives much easier!

Second, Leo’s self esteem with living in public with a label may be affected. Leo’s choices of friends may significantly narrow. His self esteem may be affected by feeling overwhelmed and perplexed by his label. After all, it’s hard enough to feel confident and get through a challenging day as a 7 year old. He may be reminded too many times per day that he is different, and think there is something wrong with him. In my eyes, he is my perfect little boy, but his own self image won’t feel the same way.

Third, Leo’s social life may significantly narrow. He and some of his friends may no longer be able to have play dates. He may not be included in certain activities. His friends may see adults, the people they look to model after, treat Leo differently and do so because they have learned to.

Fourth, teachers and parents may lower their expectations for Leo. He may be able to get away with accomplishing very little work, not his best effort. When I get a chance, I’ll link a scientific study providing research supporting this outcome. It was published in a psychology journal and I saw it in the Wall Street Journal.

I am in the weird position of being a part of the typical world that us ASD moms usually don’t see. Typical parents do not know of my past, so they freely speak truthfully with bias in front of me. Teachers do this too! Honestly, I hear and see discrimination at least once a month. I am not kidding! Last week was a busy one, so here are 3 examples JUST from this one
week!

1) I know two 3 year olds - one has ASD, and the other is typical. They are good friends – they hold hands in circle time, they seek each other out when they arrive at school. The moms have had a couple conversations in the parking lot, gushing about their budding friendship, and discussed getting them together soon. Recently, the mom of the typical child by chance saw a shadow and her child’s friend together. Until then, she didn’t think this child could possibly be “the one” with a shadow in class. She got curious and got her confirmation. The ASD mom wondered why she never got that call for a play date as excitedly discussed. Today, I saw the boys playing together like they always do. While playing, the typical child states out of the blue, “my Mom said you can’t come to my house”. Because this parent knows about the label, these boys are kept apart.

2) While volunteering during the recess shift at school, I get to talking with one of the paras. She turned out to be a substitute para. I had seen her so much I didn’t know she wasn’t a regular. I had been thinking about becoming a para in the fall when my daughter started attending Leo’s school, so I began asking her about how she liked it, how the process worked. During the discussion, she mentioned she could turn down certain schools or certain jobs. I said that it sounded pretty flexible. She said she always turns down working with the special needs kids. In my academy award performance, I asked why she wouldn’t work with these kids. Again, she didn’t know I was a sp. Ed. Parent, former being the technicality. She didn’t have a definitive answer, only that it made her uncomfortable.

3) Our school budget is in the process of getting approved by the town. At the PTA meeting on Thursday, I heard a parent mutter under her breath about how all of the special needs kids gobble up so much of our money.

The Choice Of Going Public With The Diagnosis
Many parents choose to share the diagnosis with other parents, the teachers, and friends. Many parents don’t have a choice since their child’s presentation may be obvious. Many parents just don’t want to live a double life. I can’t blame them! Just like each child with ASD is unique, each family has their own unique set of circumstances, preferences, and styles that makes the choice unique for each family. I know many families that are quite happy and are supported by their neighbors, family and friends. Some are touched very little by discrimination. I envy each and every family that lives each day along side other special ed parents.

Outside of putting Leo’s needs first, I much prefer to live in the special ed world. These parents are the best parents in the world. This disability have turned them inside-out, forcing them to be real, honest, and have their priorities straight. I miss that safe haven. In special ed, Leo is amongst his fellow parents and peers. His past is accepted. We are the same, understood. Special needs parents don’t realize how truly ignorant the typical world is. They don’t see it, they don’t hear it because typical parents know many of the special needs parents. And I am very happy about that!

I am proud to be associated with all ASD kids. Leo may have lost his diagnosis, but he still shares this disorder. True, Leo is stablized and has reached recovery status. There are no more programs to master. But, until there is a cure, he will still be wired differently. His immune system and GI system will still be compromised. Leo still must remain on the GFCF diet.

If we still had an open IEP, this is what my goals would look like:
1) Continue to monitor Leo's development. Keep current on therapy options and research.
Something may come down the pike that applies to us, or will apply to us in the future.
2) Protect Leo's anonymity by keeping my advocacy private and separate from Leo's life.
3) Manage Leo's immune and GI systems to keep him at optimal health.

Some families have had the opportunity to raise their ASD kids in close-knit neighborhoods. In some cases, I’ve watched the neighbors of these families suffer from ASD right along with the family. The beautiful part is watching these neighbors learn that our kids are kids first, and that ASD is nothing to back away from. These children are surrounded by their typical
neighborhood kids, growing up right along with them. These typical children will have an excellent shot at becoming bias-free adults that treat all people equally.

Some families have large extended families that have rallied around our ASD kids, creating a positive, supportive, environment. This is something that any family, typical or not, desires. At least I do!

Discrimination

2007-04-01T08:09:00.000-07:00

My Son Has Autism Too!
By Ashley Morgan (written Mar'04)
Autism Aspergers Digest Magazine May/June 2005

My son, Leo, is expected to recover from Autism. What does this mean? According to professionals, he will be indistinguishable from his peers and grow up without his disability impairing him from a typical life. Will he always be different? Yes. Will social skills be a strength? Probably not. But, he’ll have choices and the ability to choose from them. He can choose to invest in friendships or connect with people around him, or not. He can play Power Rangers with a friend or spend hours alone playing computer games.

My husband and I thank God everyday for his progress and his ability to learn. We count our blessings, for they are many: that I can be a stay-at-home mom, that we found good professionals early on and that we have a solid team that addresses Leo’s deficits. At 5 1/2, Leo is expected to go to kindergarten this fall with no shadow, essentially done with services.

As much as I could go on and on about how wonderful Leo is and the progress he has made through the years, this is not another one of those ‘hoorah’ stories. I’m not here to be a cheerleader, or an inspiration. I am writing this to demonstrate how my life as a parent with a child on the spectrum is really no different than yours. Having a child on the spectrum is having a child on the spectrum. Each family is dealt their cards. We all battle the myth that Autism comes in only one brand, a hopeless and untreatable stereotype. I’m here to dispel another myth: that having a high-functioning child, or even a child who’s a
candidate for recovery is easier. I want to give parents like myself, of children who are high-functioning, a voice finally.

My story of how Autism has affected me is no different than any other Autism mom: the pain, the sleepless nights, the exhaustion. However, our story has one difference –Leo is high-functioning. His diagnosis of PDD-NOS and the mildness of his disability was a blessing. But it has also been a drawback as well, both with professionals in our lives and with other parents of kids on the spectrum. Precisely because Leo is high-functioning, I am discriminated against by others. ‘Discrimination’ is a strong word to use – I know. Yet, Webster’s definition, “to make a distinction on the basis of a prejudice” is exactly what it
feels like to myself and other moms whose child is mildly affected by Autism. The very last place I thought I’d find myself fighting discrimination is with my own kind. Yet, here I am.

Do I think it’s intentional? No. Do I think people know when they’re doing it? Sometimes. Do I get any support from my peers? Yes and no. I do get support regarding the overall struggle, issues we all share with our school district, the toll Autism can take on a marriage, siblings, etc. But when it comes to sharing the ups and downs about Leo and his everyday life, my words fall on deaf ears.

No one asks about how my son is doing. They don’t want to hear my problems, because no one sees them as ‘real problems.’ Dare I discuss that Leo is having a bad week, initiating only 1 or 2 exchanges at preschool versus his more regular 4 or 5? Or that I am frustrated by his constant insistence that I watch him play his Gameboy, and that his lessons on perspective taking are not yet taking hold? Dare I risk another cold shoulder or again watch that ever-so-slight turn-away when I express my opinion that Autism isn’t hopeless, that while it makes our kids different it is also part of what makes them unique and wonderful? Dare I ask for advice? Not any more. I have learned to remain silent at meetings; I just listen.

Perhaps part of it reflects the old adage, ‘out of site out of mind’. I am the last person people call to tell me something important about my district (like someone getting fired or a change in a program). My calls go unanswered when I ask parents to attend an IEP meeting and support me. My advocate? My attorney? It takes them double the time to call me back, and we’re last in line to get a meeting date. There’s this perception (mostly unspoken) that our needs are not pressing because Leo is already high-functioning, that he is more than not ‘just fine’, and that other parents’ problems are ‘more important’ than
are ours. On occasion this might be true, but generally it’s a fallacy that I have to live with day after day after day.

So what is it like to have a child in regular ed? A piece of cake? Think again. A significant part of my daily challenge is to explain the issues Leo faces, our goals, and how to address them. We are working with the outside world, the world that doesn’t ‘get’ Autism. Instead of dropping our child off in the safe haven of special ed where he and I are understood, we must invent our ‘individual school’ within a regular classroom. This requires constant involvement. We must introduce Autism, shadows, and other 'disruptions’ to this outside world. It’s not easy.

Educators ignore my panic over Leo’s issues not getting addressed. Because these kids ‘look good’, their need for services that will lay the groundwork for future learning goes unattended to. Sure, our kids can learn to laugh when the other kids laugh, without a clue as to why they are laughing. Sure, when our kids are little, it’s cute when they take things
so literally. Looking good can get them by for only so long, and it’s no longer cute when they are in middle school. Professionals view 3rd grade as a marker, where kids often‘break down, no longer able to fake it and get by without the services they need. Its when social demands and academic demands – especially those that involve abstract thinking -
make them stand out as different than their peers. By then, the damage is already done: the child’s self esteem and confidencecompromised as they try to become who they were meant to be. It’s sad that many educators would rather wait for a disaster than prevent one, that they ignore the fact (despite our many utterances!) that we can invest time and attention now or have to invest so much more later. Often, the more significant the issue, the easier it is to understand and see. It’s many of the high-functioning kids who really lose out on services.

Honestly, Leo and I live in two worlds, the ‘regular’ ed world and the special ed world. We lead a double life. At two, I was thrilled that Leo could tolerate daycare. However, I found that well-meaning caregivers treated my son differently, in a way that made things worse for him. They didn’t demand that he finish his coloring like all the other kids; he has Autism. They didn’t stop him from running around like crazy during circle time; he has Autism. This is the opposite thing to do for any child, even more so for a child who needs structure and prompting. They spoke louder and more deliberately to him, as if he were
hearing disabled, which he is not. They permitted him to sit alone in the playground, picking up handfuls of sand and watching it slowly fall out of his hands. They allowed him to lie on the ground for hours, rolling a matchbox car over his stomach while the rest of the kids played blocks together. I was constantly explaining, coaching them on how to not treat him differently.

I spent immeasurable time and energy integrating Leo’s shadows into his preschool, educating them on this disability, getting them to be open to this unique arrangement in this small, quiet preschool in the owner’s colonial home.

Parents and kids think his school shadow is another teacher. In no way is it obvious that the shadow is there for Leo. She never hovers, she works with all the kids, perhaps covering the fine motor center, casually keeping her eye on her guy. She will prompt, explain, or quickly intervene in some way when needed. Fortunately, Leo is not singled out, as happens in most typical ABA programs at this stage in the game.

One day as I’m standing in the parking lot, I saw Leo’s shadow walk by, but I don’t say hi: A typical mom is coming toward me to have a chat. I decline her invitation to a Tupperware party. I say I can’t find a babysitter, but in reality I have a meeting with my attorney.

I attend a lunch for all the preschool moms. I talk about the amazing layout of food, envious that they have the time to put on such a display. I think about how I am not missing that frozen burrito that would have been my lunch. The women talk about the various elementary schools and their class sizes. I listen in, hoping to learn something from the moms with older siblings.

The conversation turns to paras. One mom says there is at least one para in each class. Another says there isn’t any for her child’s oversize class. The hostess emotionally tells us that her older daughter’s class has three! She can’t believe that the designated kids each need their own para. “I understand that parents want to mainstream, but honestly, it’s a mistake for them to be in the class anyway. When I volunteered the other day, they looked anxious and frustrated,” she says. I had to hide my beet red face. After I composed myself, I calmly reentered the conversation, but said nothing. I’ll see five of these parents at Leo’s school next year.

Leo has regular play dates with typical peers each week. Fresh from a horrendous IEP meeting, I have to table my emotions, put on a relaxed face, and act as if I had a normal day of errands as I sit down with the other parent. I talk about redecorating, about my family, about how we need to trade in our lease on our car. In my mind I am thinking about how we are going to get by until the next paycheck. Leo’s anonymity is too important, I don’t dare say anything, even to the most sympathetic adult. Picture this: “Hey honey, you know what Leo’s mom told me today? That Leo used to have Autism, incredible isn’t it?” while Leo’s playmate overhears from the other room. The next day the playmate asks Leo what Autism is.

Last week a mom in our Autism support group asked me what we planned to do for Leo’s services next year. I avoided making eye contact, and almost hesitantly mentioned that he will be done with ABA and will go to school next fall without those supports. There was a shift in the air between us. She said “Oh”, and forced out a polite smile, nothing more. I quickly added that he’ll still need speech and OT. I cross my fingers that she’ll return my calls this summer. We have little girls the same age that go to a class together and like each other very much.

Last month I found myself again being chastised by one of the ‘old school moms’ as I counseled a ‘newbie’ – a mom of a newly diagnosed toddler. Moms with older children, even as young as 10 years old, missed the incredible opportunities that the ‘90’s research and technology have brought our kids. Many of their kids didn’t receive the quality or intensity of services that my child has been blessed with, just by being born later. They preach acceptance of a child, even of his or her limitations. “There is no cure,” they say. “There is no recovery.” They preach only what they know, not willing to look further at what might be very painful to see – that for some, dramatic progress is possible, recovery is possible, but maybe not for their child. Someeven have the audacity to tell me to my face that my child never had Autism because he is now functioning so well. They say, “Well, PDD-NOS….he never had any real issues.” They challenge my child’s diagnosis out of pure stubbornness, not wanting to feel wrong. They hang on to their doctors, their therapists, their theories for dear life, having no idea the damage they do by coaching a new mom with dated, incomplete or biased information. Or the wounds they inflict on those of us who are trying just as hard as they did to create better futures for their child, just doing it in a different manner. They foster division within our own community instead of embracing all paths parents might choose as viable options to help our kids.

Whether a child is high-functioning, low-functioning, is verbal or nonverbal, stims or not, all children deserve the services they need to maximize their potential. And, they deserve parents who are supportive and engaged with their child and their community, a community that rejoices in the successes of everyone, not just those who members deem ‘worthy.’ Leo may be working on perspective taking while other kids may be working on basic greetings. Yes, many moms would kill to have my problems, but problems they still are. It takes the same amount of time, energy, and strength on my part and Leo’s to get
through each week as it does for other families whose kids have ASD. Leo’s 35 hour-per-week program consists of ABA, PT, OT, and SLP, and I drive him to three different locations each day for those services. He misses out on play dates or day trips like going to a museum because of therapy. My family can’t go on vacations longer than a weekend, missing out on seeing family, because he can’t go long without his program. My son can’t eat snacks or birthday cake at friends’ homes like everyone else because of his “crazy diet”. As a bonus, we have the occasional doctor and nutritionist appointments, Tae Kwon Do and swim lessons on weekends, all with a goal in mind – equipping him with the skills he needs to function in the world around him. We are drained financially and emotionally, just like other parents.

I am not walking around saying that what I did is a ‘model’ for other parents to follow. Quite the contrary. There is a special blend of therapy for each individual child. There is no one-size-fits-all therapy, just like there are no two children alike on the spectrum. However, I have learned a few things that I choose to impart to other parents: Don’t give up on striving for the maximum level of services for your child; NEVER give up on their potential - they’ll always surprise you. Reach for the stars, start at the top and work down, not the opposite or you’ll settle for less than your child deserves. Go with what works; be
constantly open to new ideas. Leave no stone unturned. Revisit ideas abandoned earlier as they may make sense now. Not everything comes with an explanation or can be backed up by scientific research. Who wants to wait 30 years? KNOW there are many recovered kids out there, hidden ever so carefully, peppered within your schools, your town. They can’t be the Autism poster child because it would end up hurting them, rather than helping them because of the ever-prevalent negative ideas still held about Autism.

And, please realize that we moms with high-functioning kids feel just as frightened, alone and vulnerable as do the rest of you moms out there. We often witness from the sidelines the compassion, acceptance and support you give to other moms, and we long for it, too. We want to belong to a group where we can share our experiences – whatever form they take – and be listened to and appreciated, too. We are often lonely and need that quick understanding glance and smile from a comrade, and yes, even validation that our choices are good ones, our reasoning appropriate for our child. Because our child is doing well doesn’t mean our fears and concerns are less prevalent than are yours.

While our kids may function on different parts of the Autism spectrum, what unites us all is the love we feel for them, and the deepest desire in every parent that their child can enter adulthood equipped with skills to succeed in life. For those of us parents whose child may be progressing at a quicker pace, and especially for those of us whose child has recovered, the journey may seem easier to the outsider – even an ‘outsider’ within the Autism community – but it’s not. Let that be an understanding that unites us, not divides us. We all need to be supported.

BIO
Ashley Morgan describers herself as a child advocate and parent mentor. She is a full-
time mom of two children, and enjoys organic vegetable gardening and Ashtanga Yoga.
The Morgan family lives in New England, along with two ponies, six cats and two dogs.
Contact her at ashley@hiddenrecovery.com

Therapy Bashing

2007-04-01T08:07:00.000-07:00

A Word About Therapy Bashing

So what if ABA isn't the be-all-end-all? So what if the diet didn't help? So what if kids still have issues after recovery? We have come a long way, baby. We should be celebrating the fact that there are effective treatments out there to get these kids this far,regardless of what still isn't "fixed". Just think about what we used to do with kids that had Autism. Institution city! There continues to be no magic bullet, but fabulous treatments that get better and better each year. Each kid has their own unique "special blend of ASD". This requires their own unique "special blend" of therapies. It just doesn't matter what it is called, who it worked for, or who it DIDN'T work for.

"Special blend" of therapy? What is that? There are definitions galore for ABA. Diets - tons of variations. Practioners? Therapists? Tutors? Teachers? How about their experience, own philosophy, training? How could we EVER make a blanket statement about a certain therapy option? It's like saying "all cancer medications don't work". Or, "all lawyers are really great". Stuff like that.

Recovery is a fairly new concept. Dramatic improvement is a fairly new concept as well. Therapy bashing really comes into play when people discuss recovery. The recent technology that addresses social issues which in turn "finish" a child isn't widely known. Therefore, older kids that didn't get this new technology are at risk. They may eventually "fall down" by 3rd grade with metacognition or later. The technology I'm referring to is called Theory Of Mind, as well as executive functioning and abstract thinking programming. It's usually delivered "embedded in play" style, and it's part of ABA. Uta Frith is the "father" of theory of mind, and Simon Baron Cohen wrote the groundbreaking essay called "Mindblindness". His curriculum, "Teaching Children With Autism To Mindread" is what ABA therapists that have had training in theory of mind often use to design a program for a child.

Theory of Mind is the "root" of autism. It's the lack of a natural ability to read other people's emotional states; taking others' perspectives, see motive, intent,desire, etc in others. We all learn this naturally and can keep learning and generalize as we get older. Unless you teach a child "how to learn" they will have to be taught year after year how to "be" that age. The child can "look good" for only so long until the other kids catch on.

With theory of mind programming, delivered via NET (natural environment training) ABA or RDI, or something else, children can learn from their environment, enjoy emotional reciprocity and enriched relationships with others. Luckily for us, my child reached the stage AND was blessed to have experienced professionals that understood how to finish him out.

Leo will always learn differently, since their is no cure for his neurological make-up. However, children can achieve normal function even though they are wired differently. I do not think my son will not "fall down" at a later date. He's in 4th grade as I update this, and doing very well. No falling down yet. However, I have full confidence my son will have teen angst, bouts of anxiety, self-doubt, and other "normal" problems because he is a child.

Here in CT only 4 people I know of are proficient in these particular programs that are a part of ABA. People think of ABA and think of discrete trial. This is only a portion of ABA. RDI, VBA, and other philosophies now have programs that can tackle this very sophisticated issue of socialization. I know personally a few children that are older and indeed have no issues because they were lucky enough to have access to this programming. Others that didn't get this have indeed suffered from ridicule and
continue to not fit in. They will never catch on. It's the definition of the disability. After all, being human is complicated.

TO: Shafer Report, Letter to the Editor

DATE: 1/26/05

RE: Letters regarding the NY Times articles, and future efforts by their
reporters

I am very concerned about the attempts at discrediting various interventions by the press, and most shockingly by other parents. These parents should be ashamed of themselves for adding fuel to the myth that Autism is untreatable and only comes in the form of the stereotype. They have allowed their personal experiences with proven, effective therapies to interfere with considering the countless of unique children out there that need our support. How many parents will not even consider ABA because of parents like Barbara Barker? That happened to us personally. We heard ABA was bad from another parent, so 1 ½ years went by. Later, we met a DIFFERENT consultant that "got" our child's specific needs, and our special ABA program became the cornerstone to my son’s recovery. These comments do a heck of a lot of damage to all of our children.

We all need to take the perspective of the press. They are not the experts. They are only looking for a good story, something provocative. They cannot possibly understand this complex life after a few interviews. They are on the side of the NIH and
the insurance companies that are looking for parents like Barbara Barker. They are looking for researchers to make one negative comment and take it out of context, so they can get out of paying for these life changing services.

All of this is about children. The news about effective treatment for Autism should be acelebration in the press and with every parent as well, regardless if a specific treatment helped or not. All families should consider ALL viable treatment options. We all need to consider how our comments will serve in maximizing the potential of each individual, regardless of where they end up.

As a parent of a newly recovered child, I too have seen with my own eyes how each child responds so differently, even in the same family, to therapies. Honestly, I have very little faith that a neat little package of research for each therapy will ever exist, since no loving parent will put science before the welfare of their own kid.

I fear that parents will no longer "leave no stone unturned" regarding treatment. This scares me, a potential for improvement, even dramatic improvement, not even attempted. It’s critical to keep top of mind that each child is different and responds to
their own “special blend” of therapies.

There is such a wide description of programs and philosophies behind each therapist. Making blanket statements about ABA or dietary intervention is dangerous. Behind any fabulous recommendation is a person that did the therapy. People will always recommend what worked for their kid because it worked AND because of the details of the program and people who did it.

My hope in writing this letter, is that parents and researchers will seriously consider what they say before they criticize what helps many many children have a life.

More on this subject by Catherine Maurice

Ashley's Corner

2007-04-01T08:06:00.000-07:00

Ashley’s Corner

I do cook a lot, bake some. And I do eat out about 2 times per week for Mexican, Chinese, or to the local diner for a burger and fries (no hotdog because their brand has dairy). Garlic Jim's or local pizza place for GFCF options.

Here are some of our favorite HFS brands that keep us alive:

Pancakes: Authentic Foods pancake mix, Pamela's
Flour: Bob's Red Mill GF Flour Blend
Roll-Out Cookies: Cause Your Special
Cake Mix: Cause Your Special, Betty Crocker vanilla
Chocolate Chip Cookie Mix: Bob's Red Mill
Chicken Nuggets: Bell & Evan's GF frozen Chicken Tenders
Fries: frozen Cascadian Farms

Breads/Bagels: Udi's
Donuts, frozen pizza crust: Kinnikinnick.com
Granola bars and cereals: Envirokids: Koala, Panda, and Lemur
Store Bought Cookies! Vanilla oreos, chocolate oreos, and animal crackers:
Kinnikinnick.com or MiDel

Store Bought Muffins: Udi's
Canned Frosting: artificial is our friend when we have no time: Pillsbury, General Mills. Check as they change all the time
Candy: certain flavor Starbursts, Skittles, sweetarts, Trident gum.
Chips: Other than HFS brands like Bearitos, Frito's, Cape Cod, some Lay's
Pretzels and finally, pretzel sticks: Glutino, and more recent, Synders
Pasta: Tinkyada organic brown rice pasta. Quinoa pasta.
Cheese: Tofutti sliced
Yogurt: Silk or Whole Soy.
Frozen fruits: Cascadian farms, great for smoothies (water, ice, shaved coconut, strawberry, blueberry, mango, pineapple), and you’re good to go. Perfect for supplements!
Favorite car snacks: roasted and salted cashews, shelled pistacios, and almonds (good for protein blast). Sunflower and pumpkin seeds ARE NOT nuts so they are safe for school lunches and snacks. Yeah!Fresh apples, pears, oranges.

Make It Fast Cook It Slow Crock Pot Cook Book.

Babycakes Cookbook I was super excited to recently own this cookbook. A luxury!

Click on Biomedical for more cookbooks and diet info. Cheers! Ash

ABA-NET and Shadows

2007-04-01T08:05:00.000-07:00

ABA - NET by Ashley Morgan.

A contribution piece published in James Ball's Early Intervention book,
Jan'08. This is a longer, draft version

Our son, Leo, was diagnosed at two with PDD-NOS. He received early intervention services through our local Zero to Three program. About a year after the diagnosis, we realized preschool age was quickly approaching. Our exposure to other special needs children, particularly those with Autism, was very limited, yet I knew as Leo’s mom, I needed to take a look at where he
might go next, since once he turned three, his early intervention services would be provided through our public school system. I began my search for a school, thinking Leo would be placed in a special education program that would address his needs. To my surprise, the programs I looked at seemed grossly wrong for my son. I may not have had a whole lot of experience with Autism at that point, but I knew this like I know my own name. I realized then and there choices for school and a program were not going to be easy.

What was I going to do? The public school’s special ed program had no other children like Leo in it. He could handle himself in a regular environment, and had mastered basic skills. His behaviors were manageable and he was ahead academically. At three, Leo had progressed to the point that he had some language, but the social skills gap between him and his peers was widening at an alarming rate. I knew it was only time until his social deficits were noticeable to everyone. But, where did he belong?

Time was running out; I had to make a decision. Should I place him in the special ed school where he clearly didn’t belong? Or, should I keep my spot at the local regular preschool? I had signed him up when he was just one year old, before his diagnosis. I finally went with my gut, which told me the regular preschool was a far better fit (although challenging), than the special ed
program where he’s probably get away with murder and stim all day.

My big lesson? Even though my son was “high functioning”, he still needed a formal intensive program. No matter where your child falls on the spectrum, all ASD children need and deserve this.

I continued to research programs and therapies, trying to find a good match for Leo. To my surprise, I eventually found myself back right where I began, with ABA. Early on into this journey into early intervention and autism, my Zero to Three team told me ABA was a very bad approach, totally wrong for Leo. They scared me with horrible stories, and after hearing what they said, I trusted their judgment. I now realize what they were describing was just bad ABA. Crappy ABA seems to dominate many environments, I’m sorry to say! And, parents need to be aware of this. As the saying goes, “There’s more bad ABA than good ABA, and everyone is busy.”

I believed my team advisors and to their credit, they were partially correct. DTT (discrete trial teaching) wasn’t the correct intervention method to address the goals and objectives exquisitely laid out by my Yale evaluation professionals. But that didn’t mean ABA in general was wrong for Leo. I investigated further and through conversations with other ASD parents, finally
found the right ABA delivery method for Leo, one that was built on two important premises: 1) detailed, individualized and intensive goals and objectives, and 2) the right therapy for each one. For Leo, the right intervention turned out to be ABA-NET. ABA-NET is a form of ABA where intervention is delivered in the natural environment – our family room, at school and day care. It also efficiently addresses higher-level social skills like perspective taking, Theory Of Mind, and Executive Functioning – the missing piece we were looking for in a program for Leo.

At home, Leo’s one-to-one ABA therapy sessions were not at a table, but held mostly in our family room, living room, and sometimes outside. Leo “led” the play sessions with his “grown-up friend” (his therapist). Just like DTT, a Clinical Supervisor designed individualized ABA goals and objectives for him. The difference was how it was implemented (NET).

At the beginning of each session, the therapist reviewed Leo’s list of programs and any previous session notes, and began the session by asking Leo what he’d like to do. After discussing various options, the therapist would incorporate a goal into play.

For example, Leo asked to play the board game Shoots and Ladders. While setting up the game, the therapist asked Leo to guess which player piece she’d choose. She and Leo would have a discussion about how Leo could figure out which token she may pick. They’d played the game many times, so the therapist used that prior knowledge to demonstrate how history can be helpful. Does the therapist choose the same piece each time? Why or why not? Leo was also asked to recall her favorite color, as every therapist has tastes and preferences just like Leo does. This conversation worked on the program goal Prediction.

It was common that during the game, other spontaneous opportunities for learning something that applied to one of Leo’s goals could arise. For instance, during the game Leo’s baby sister woke up from her nap, crying. Leo and the therapist heard her on the monitor. Taking advantage of the opportunity, the therapist asked Leo how he knew she was awake. He had no idea. They discussed ways Leo could know this information. Could he see her? No. Could he feel her? No. Oh, he could hear her. That was it! This conversation worked on the program goal Sensory Perspective Taking.

After a game is over, they may play again or move onto another activity. With goals and objectives in mind, the ABA-NET therapist continues to weave learning into natural activities and experiences. Throughout the session, the therapist redirected Leo away from stims and kept him on task, utilizing positive reinforcement. Leo worked hard, but he had a lot of fun during his
sessions too. ABA is all about positive reinforcement! Snacks, sensory input, and a change of scenery may be considered. Depending on the day and duration of the session, Leo practiced some or all of his objectives. At the end of a session, the therapist filled out data sheets in paragraph-like form, describing what they did rather than reporting raw data, although some raw data was taken for stims, redirections, etc.

ABA-NET has the advantage of allowing the child some control (reinforcing in and of itself) and activities/materials chosen by the child tend to be more motivating. NET also makes it easier to utilize and/or introduce naturally occurring reinforcers (for instance, to play a game just because it's fun), which allows behaviors to generalize and persevere.

When not doing ABA-NET at home, one of Leo’s ABA therapists took the role of a “shadow” at school and day care. She facilitated only when needed, remaining in the background as much as possible. The therapist facilitated social interactions, provided Leo with additional information, and gave feedback and prompting when necessary, all with Leo’s goals and objectives in mind.

Taking the example of the program goal Prediction again, the shadow may ask Leo what a classmate may do first when they go out for recess. Will his friend Jack run straight for the swings like he did the last three days?

Leo had the ability to function in a normal setting, so this is where therapy resided, integrated into his and our lives at school and within regular home life (although we modified it quite a bit to reduce stimming and increase regular play and interests). Working in the real world, at school, at home with real games and teaching within the fluid structure of daily life events that come up unexpectedly made sense to all of us, since this is where Leo struggled. Working on the front lines with him streamlined his learning. There was no transition from “therapy” to “life.” It all meshed together. Leo flew through his programs because of this delivery style.

A typical therapy day for Leo might look something like this:

8:30 – 9am OT at elementary school
9:30 – 12n preschool with shadow the entire time (2.5 hours)
Lunch
1 - 4pm – day care setting with shadow (3 hours)
4:15 – 6:15 pm – 2 hours one-to-one ABA-NET at home (carryover issues
from school/day care, work on current programs to games and play chosen by
Leo)
Dinner and evening routine. Programs incorporated when possible.

We continued with Speech, OT, and PT. Some of the speech goals were moved within the ABA program. The ABA program drove all other interventions; it was the glue that pulled all components together. They even worked on OT and PT goals during their sessions.

ABA-NET would be difficult for a therapist or parent who is used to ABA table sessions. It’s quite different. DTT is a very structured, data-driven teaching format, and it can be challenging for adults to adopt the mindset and alter their teaching style to manipulate the environment in order for the child to think he’s in control. The child may be given several choices of what to do or play, all embedded with skills to practice! I think ABA-NET is much easier to learn than DTT, RDI, and other approaches, but everyone is different. For this reason I was always nervous about integrating a new therapist into the mix. With DTTany new therapist can just look at the data and notes, and get to work. With ABA-NET it takes a while to break in a new therapist. They have to spend time with the child, learn his patterns, his strengths and weaknesses. Only time reveals a child’s subtle tricks to wiggle out of doing something he doesn’t like or want to do, or to notice how stims impact learning. My Leo can be a great manipulator and new therapists don’t recognize his patterns right away!

A therapist has to be very seasoned in working in general with children the age of their client. Therapists with experience in regular education settings often have an advantage, since regular education interaction is the goal, if not the place where a child will eventually be acquiring skills. It can be very hard to find good therapists who have these qualifications.

As with most therapies, parents who integrate therapy into their regular life have more success than those who remain “just the parent” and leave therapy up to the therapists. Just being the parent didn’t work for me. I had an internal alarm bell that rang inside my head for about four years, continually pushing me to read anything I could get my hands on and observe most of Leo’s sessions so I could copy their teaching strategies and work them into regular life. Taking the example of the Prediction program, while waiting in line at the drive-thru for lunch, I may ask "So Leo, what do you think Mommy will order for herself? What kinds of foods have you seen Mommy eat in the past? What did Mommy order the last time we came here?" Right before feeding the cat, I may ask "So Leo, what will happen when I shake the cat food container? What will Sydney do when I show her the hairbrush? Will she frown and start to cry? Or will she smile?" I believe this is the key to getting the most out of any intervention, giving success the biggest chance of settling in, and keeping the family involved and motivated.

It wasn’t easy getting on board with the number of hours any intensive therapy requires of parents and the entire family. Leo’s ABA program began at 10 hours per week; at most it topped off around 30 hours per week. Generally it was at least 20 hours each week, and lasted over several years. Once he entered the public school system, shadow time at the preschool and day care took up the majority of the hours of Leo’s therapy. When he wasn’t in that setting, however, we spent all of our time integrating learning into regular life. We knew his programs inside and out. If I didn’t, we’d research it until we did. It didn’t make sense to allow him to stim or play inappropriately when he wasn’t in therapy. We wanted him to learn new, appropriate skills and behaviors; we thought it would be too confusing for him, two sets of behavior rules: one while in therapy and another for all the other times. I spent all of my extra time learning how to teach Leo the skills he was working on, and planning for the next set of programs. Our goal was to not waste any moment of waking time. After all, learning happens everywhere! And, the therapy was a big financial burden for us. But, so were other therapies we had in place. I have come to
believe that what you do for your child, within your own family circumstances, is a personal decision. Some families are willing to sacrifice more than others. There’s no right or wrong, just parents doing their best with what they have.

Some parents have family support systems who jump on board when a child is diagnosed and early intensive intervention begins. With our family, no one was involved except myself, my husband and Leo’s younger sister. Unbeknownst to her, she was instrumental to Leo understanding others’ perspectives, a concept that is so challenging for our children. Our dog even played a role too. Today as I write this, I still marvel at Leo comments. He is telling me our dog is watching the neighbor’s new dog. “His tail is straight up and he isn’t moving at all, looking down the hill at the neighbor’s dog, mom.” Funny how Theory of
Mind takes hold in our kids. Even notices it in the dog.

Even though intensive ABA therapy can be challenging at times, ABA-NET gave me new insights into myself and my relationships with my family and friends; I understand human behavior on a whole different level now. It was agood match with our personalities as parents overall. This therapy was nothing but a positive influence on the quality of all our lives.

After years of living the life of a square peg, we adapted to NET pretty quickly. Looking back, I now realize the early years, when we were trying to make other styles fit our family, were actually the harder part. Everything we were supposed to do for Leo seemed opposite to my parental instinct. I coined the phrase, “Counter-Intuitive Parenting” to describe to new parents the feeling they get during those first few months post diagnosis. Watching your child’s first several therapy sessions can break your heart. It’s all so foreign, so opposite to the way we feel learning should naturally occur. If you find yourself in that situation, take some time and learn about ABA-NET. Rethinking “therapy” as life-integrated learning does wonders to smooth this transition for everyone, especially the child.

I am happy to report we eventually stopped therapy because Leo has mastered all the concepts he needed in order to learn from his environment. We continue to monitor him, and if he requires assistance in the future, we’ll step in and find instruction to address his needs. If I could do it all over again, the only thing I’d change would be to begin ABA-NET earlier, at two of course!

My Leo today is not the same boy as the child who existed before we began ABA-NET. Then, Leo didn’t know how to play with other children or with other adults. He had chronic anxiety and wasn’t a happy child. If left to his own devices, he would stim about 80% of his day. His language was limited to pointing and making simple requests. About three years later, Leo no longer
met the diagnostic criteria for PDD-NOS, and today, he no longer requires any therapy. He leads the life of a typical third grader, with no label, no modifications or help of any kind. He doesn’t have an IEP, and his current teacher hasn’t even an inkling of what he’s been through. He is today judged as an individual, not a label. His third grade teacher describes him as a confident child that other children seek as a friend. He is always willing to contribute, even when the topic may be challenging. He gives it his best shot. Although he is not the best test taker, he is a solid B student at the top of his class on all subjects. Best of all, he is an active, involved part of our family and the special relationships that bind us together. He makes us all crack up regularly at home, his sister thinks he is the sweetest big brother ever, and to us, he’s our beloved son. I wouldn’t change a thing. Life is good.

Ashley Morgan is a full-time mom working part-time as a teacher. She also
maintains an Autism website focused on social skills and mainstreaming.
Ashley's goal is to "pay it forward" by supporting newly diagnosed parents, or
parents at a crossroads. She welcomes comments from readers, and can be
reached at www.hiddenrecovery.com

9 to 10 Years

2007-04-01T08:04:00.000-07:00

Sunday, October 21, 2007
Birthdays, Tics, and Tremors, Oh My....
Leo turned 9 this week, his party was today. He loved getting his name announced on the loudspeaker at school and bringing in GFCF cupcakes. Fruit wouldn't fly this year, I am the fruit pusher. When I asked him what he wanted to bring, he at first named things that I knew he didn't like (like chocolate). He said, "But my friends like that kind of stuff." What a sweet boy, thinking of them when it's his day. He's so over-programed after years of NOT eating what they eat.

After negotiating a happy medium, "healthy" cupcakes, he was happy with all vanilla with vanilla frosting.

I asked how his friends liked them, for years they have passed even the most discriminating eaters, as I always apply generous amounts of frosting. He said, "I warned them Mom." But, warning aside, he said everyone liked them, just like previous years. And Leo was considerate in reminding me to leave one cupcake frosting-free for one of his friends.

We listened to all his birthday messages from his cousins, aunts and uncles, and grandmas. It brought tears to his eyes! A good birthday. A big weekend - a sleep-over with 14 boys for a friend's birthday, his last baseball game, and I hadn't a care in the world. I am beyond grateful.

I am happy to report that Leo has had a super year so far. He's got a wonderful teacher that is upbeat and seems to "live" for teaching. And no issues so far. He's learning a lot, and his new knowledge is really obvious. His teacher reports that he's a "delightful" boy with a lot of enthusiasm. He's learning cursive and actually likes it. Fine motor? Really? He's looking forward to learning more letters so he can write more words. He hangs out with different kids this year at recess - the baseball kids, but when it's rainy and there's indoor recess, he's back with his old best pal from kindergarten. I love this of course. He also likes
to play wall ball.

He also sat next to his old best pal at his birthday party. His cousin on the other side. Very sweet! He's part of the nerd herd, in the top math class. He loves math, not a surprise. I look forward (sort of) to Parent/Teacher conferences. I wonder what she'll say - Leo reports he does talk-out-of-turn, but isn't sure if he does it less than last year. We'll see, but that's not what's on my mind. I'm thinking about testing. How will he test? Will he be able to demonstrate what he knows? Or will there be a gap? A processing issue? Untimed tests? A big year.

As I had mentioned, my daughter Sydney had been presenting minor tics (blinking and grimacing). After 3 days on the new protocol, she was tic free. I was elated. So quick! Temporarily, as one week later, Leo began blinking, and most distressing to me, presenting with something like strabismus. His eyeballs would roll horizontally back and forth, mostly to the right. I began feeling a bit P.T.S.S., but got myself together and immediately put together a protocol similar to my daughter's. As a birthday gift to me, Leo woke up on his birthday symptom-free. Yay!

Both were symptom-free for a couple weeks until I ran out of some of the enzyme. Then the tics appeared, minor, but were present especially around bedtime. I feel like I'm waiting for a million dollars to arrive (the enzymes). I'll be blogging about the cause of these tics soon....but in a nutshell, this is a symptom of strep. So when strep goes around as it indeed does, this is how it manifests in my children. No sore throat, no fever, no traditional illness.

I felt like a gift was laid upon my lap, I got an email from a mom of a 15 year old recovered boy. Merry Christmas early! I was so happy to hear from a mom of a child that is older than mine that is doing so well, and more importantly, happy. She wrote a passage titled "Then" which brought me back to when Leo was little. Perfect timing, as I always reflect back around Leo's birthday, as that's when he was diagnosed on his 2nd.

Artemisia got me thinking about Leo as a tiny baby:

I was really excited when I got pregnant. I was adopted later in life (thankfully), so I had always looked forward to a point where I'd have my own naturally family. When Leo began having small tremors following nursing at 2 months old, I was the only one that didn't think it was right. An infant shouldn't be having tremors, my instinct told me. I remember the pediatrician telling me it was probably nothing, but when pressed he referred me to a neurologist. I was so embarrassed, a new mom, sweaty, feeling awkward, nursing in front of him in his cold office. Did I mention I have giant breasts? Even before I was pregnant? Thank god I had the company of my husband. I got through it.

The neurologist dismissed them as nothing, and told me to go on with life and if things worsen, to let them know. Things didn’t worsen, but they stayed the same. That was bad enough. I dreaded the end of a feeding, looking down for any stir and followed by the familiar jittery movements. As tiny as they were, they seemed so huge that they took up the room.

Do nothing? Their words didn’t ring true to me. Everyone told me to believe the doctors. This is the Big Apple after all. Who am I, an insecure first-time mom, to question them?

By the time Leo was 4 months, severe separation anxiety kicked in. I couldn’t put him down for a second. Literally. I was so distressed. What was I thinking? I can’t do this, this whole mom thing. I must be doing something wrong and I have to get to the bottom of it. Leo had to be constantly held, he nursed EVERY hour just one side, and I couldn’t leave him in the care of anyone but my husband.

We babysat my friend’s baby that was just a few days older with no hiccups. This was the big plan, trading date nights so us new parents can get out. The baby was sweet, calm, and aloud me to put him down under the play mat. Adorable. We took lots of pictures of Leo’s first friend.

When it was our turn for a night out, I was filled with anxiety. I knew this may not work, but I had to try. Everyone told me that we just needed practice. That’s all, just practice. The family came over, excited about the prospect of extra responsibility. I didn’t know what to do. I felt like a deer in the headlights. In the arms of strangers, my screaming infant was so wound up he threw up. Embarrassed, I let my new mommy friend go home, pretending that we’d try another time. My hope for a new social circle went out that door too. I hung up my newly purchased post-pregnancy duds in the closet, knowing I may not see those
puppies for a while. I knew something was different about my son, and I hoped that this ‘high maintenance’ stuff would eventually fade. No one seemed concerned. “All babies are different, everything is normal for a baby” is what I was told.

I watched while other moms seemed to move forward into the next phase, life with a baby. I stayed home far more than I ever expected with my baby I couldn’t leave. Leo had a sleep schedule that began with him waking at noon and going to bed at midnight. I tried tinkering with this, but regardless of what cruel things people suggested I do with a 4 month old, I stuck with my gut. Half the day was over for my new mommy friends before I left my apartment. I looked forward to my weekly ‘play dates’ with the other moms until I got a comment about Leo’s lack of expression. I got very upset but kept it to myself. The pediatrician continued to tell me that everything was normal, even when I told him I was concerned about his head control. Of course, we discovered later Leo had hypotonia and overall weakness.

In my new house in the suburbs, the isolation continued. Failed attempts with babysitters kept me at home with Leo rather than going back to work. One babysitter worked out if I left just for an hour. She was getting a degree in Early Childhood and wasn’t concerned either.

About a year later I began the search for what was 'wrong' with my baby, finally taking ownership of his wellness (and mine). After I self-diagnosed him, the rest is history, history we've all made. That was a long time ago, almost 9 years ago that my journey began.

My story is no different than thousands of moms out there. But we survive.

We figure it out.

Tuesday, November 13, 2007
3 Days Till Parent/Teacher Conferences
I was talking to Leo about math this morning, and I told him how great it is that he's good at math. That his life will be so much easier because he is so smart. He says, "You remember when I needed an aide? And now look, I am good at stuff." I said, "Yes Honey, it's pretty amazing isn't it? You needed extra help and worked very hard. And today you are advanced in many areas and don't need any help."

I was so taken back by this on so many levels. First, we NEVER used the word aide. We called them shadows, also a word we never used in front of him. And the one-to-one therapists were called teachers or tutors. He must relate to his peers at school that have aides. I asked if he talks about this at school, either with his teachers or peers. He said no, and I didn't ask why. Is he self-conscious? Over the years we've beenvery open and matter-of-fact about it, repeating the "everyone is different, everyone has stuff to work on" speech. If he said yes, I would want to know how it was received, how he explained things, and I'd assess thesituation to see if he needed to know about the label of Autism. I don't know what else to add at this point.

On another topic....I told Leo that he needed to go shopping with Dad to buy new sneakers for school. His eyes lit up as he began describing exactly what he wanted. He's always been brand loyal (Sketchers recently, New Balance in a stimmy way when he was little). But today, he talked about shoes his friends wear, and described in great detail these basketball high-tops. Leo is now into fashion, what's cool.

We had Veterans day off, and I found myself at the mall using gift cards with the kids. I looked at Leo in amazement. Who is this kid in 5 1/2 size Adidas with a baseball cap on backwards? I mean really?

Friday, November 23, 2007
Conferences and Stuff Happening In 3's

Friday was a big day as I knew it would be:

1) Leo's Parent/Teacher Conference
2) My Grandmother passing
3) Left my children with family for our first weekend alone in 9 years (Leo is 9).

Shockingly, our conference didn't bring up any deficit that required services. Hurray! I was relieved that my husband was able to make the meeting so he could repeat what he heard which did match what I heard. I wanted to be sure I interpreted the situation accurately, and since I knew I'd be freaking out inside, I may miss something. As we know, 3rd grade is the big marker year, testing begins and this is when residual issues can come up. I've seen his marks so far and his report card. A solid B student. We'll see what happens after she knows him better and what happens after standardized testing and the end of the year. Then for sure I can be relieved. Or will I ever? I don't know.

Leo's teacher seemed to really enjoy him, and said he was a very enthusiastic learner, and gives it his all. He participates most of the time, and seems to be in a good mood all of the time. She said he's always willing to help and is very respective and
considerate of his peers. She also said he is someone other kids seek out as a friend. Of course, that one got both of us teary. I
asked about the talking-out-of-turn, and she said he "needs to raise his hand more often", but didn't seem concerned about it. When I asked more about it, she seemed confused, so of course I changed the subject. Obviously not a disruption or a major issue. Something to work on for sure, but not as it once was. She said all the right things, "He's a sweet boy, you must work very hard as parents. Good for you.", and of course I wonder if she says that to everyone to relieve stress. Who knows. Either way, I am happy Leo continues to blossom and not need any modifications. I am beyond grateful and amazed by him.

As I was getting ready for our big weekend, I found out my sweet grandmother finally passed away. We knew it was coming, she had been in the hospital and a home for a while now. It was a perfect ending to an incredible life. She died naturally at 96, with family around her, in a quiet environment with material comforts and things that were familiar to her like pictures. I really feel for my mom, and am relieved for her that she can recover from her loss.

My SIL and MIL offered a while ago to tag team for one weekend this fall, and so we finally did it. Yay! The kids did GREAT, even when my daughter had a fever the night before that broke and a cold while we were away. I am so grateful that we can actually leave them - they are old enough to stay without us, not in their house. Leo is no longer hypoglycemic, and can basically eat anything with no consequence, although an enzyme and no gluten is preferred. The days of constant stimming have been long gone, but a toddler with a "high-maintenance" older brother kept us home. The food/supplement stuff was too challenging until recently. A couple days on a skeleton program was just fine. The days are gone when one bite of a muffin would send Leo into a catatonic-like fog. Living by the clock with food is also gone, so leaving them in the hands of my inlaws was a reality. Everyone had a great time and for sure we'll do it again. I can't believev it's been 9 years! I am grateful though, many Autism families can NEVER leave their kids. I have a friend with a son with diabetes - you thought Autism was a lot of work, man! So, we were grateful to not worry and not worrying meant we could really relax and have fun. It was like a super date!

Friday, February 01, 2008
Quarter 2 Update
We got report cards yesterday. I wasn't as nervous about this one since it wasn't our first experience with 3rd grade and this teacher. Everything still looks great! Icecream, a call to Grandma, high-5's, and cudos all around. He is a solid B student, and has shown improvement in several areas;

1) following directions (in personal development section), an executive functioning
challenge for him.
2) using word analysis skills (reading section),
3) writing with organization, spelling correctly, and spacing letters and words appropriately (writing section). His teacher said "He shows strong word work and editing strategies in his daily work and is now giving more details in his writing." Pretty amazing since he has to work much harder than the typical student.

In P.E., he shows highest marks for sportsmanship, behavior, and effort, but "Satisfactory"for developing strength, skills, and endurance. No surprise here! I still can't believe he can do age appropriate skills. And to think he LOVES gym, and isn't affected by his largenessnot matching the stereotype of a "tough football kid". He has similar marks in art, where he is just "Satisfactory". And highest marks for Music. Again, no surprise!

And speaking of Music, who in the heck invented the Recorder? I'm sure I'll offend someone when I say that it's the STUPIDEST instrument! I mean really! I hate the sound, and I openly complain to Leo when he has to practice. Poor kid, no role model here. I guess I'm a snob, as we continue with piano lessons at home (I teach them). I do look forward to the Spring
Concert, where his class will play that dumb instrument while tears stream down my face.

As far as his personality goes, he is very well liked by his teacher and peers. His teacher says "Leo's genuine kindness and eagerness to help others is contagious and is a wonderful example to his peers."

Wow, is all I can say. His personality has nothing to do with parenting. We are just very blessed by his wonderful soul being in our lives each day.

Leo's social development continues to grow as far as I can see, in a typical fashion. I'm no expert for this age, as my daughter is 2 1/2 years younger. He still enjoys carpooling to baseball with one of his good friends. Recess is great, still revolves around activity led. I recently asked him who he usually sits with at lunch. It sounds like he rotates between histwo good friends from class (they can only sit with their class). He told me one friend told Leo he was sitting more with the other friend, and asked if Leo could sit with him that day. Leo said he felt bad, and now really tries to "make it even." So sweet! If you told me yearsago that kids would seek Leo as a friend that way, I'd say you are smoking something.

Recently, I found myself walking around Target with my 4'9" son looking for the "right" sweatpants that all his friends are wearing at school. He picked out 3 black pairs, all allegedly "very different, Mom." One pair, made that "swishy" noise. Each had stripes along the side - one with red, one blue, and one white. I said, "How about the same pair, but in
grey?", as I held them up. "Nah." I tried navy, but no luck. So I was at the register, surrounded by pimply teens with their undies showing, buying 3 pairs of similar BLACK sweatpants. His new uniform, that goes with his fancy basketball shoes.

As we were getting ready for school this morning, I asked Leo if he was going to take his racoon Webinz to school (it was on the table near his backpack). He said, no. When I asked why, he said that most people don't bring them to school anymore. I shrug and say,"Oh, okay." A true follower, which is fine with me. Follower, leader, I just don't care. As wegather our things to leave, Sydney says "Hey Mom, Leo doesn't have his jacket zipped." And I say, "I know Sydney, Leo knows the rules, I'm sure he'll remember to zip it before we leave the garage." Leo chuckles a little while shaking his head, and says, "Of course, you had to say that loud enough so I could hear it." Which I did! Busted!

These little exchanges demonstrate that his Theory Of Mind is working well enough.

Well enough to take shots at his Mom.
Well enough to know his sister lives for these opportunities.
Well enough to have a chuckle with his family before a long day of school.

Friday, March 28, 2008
Kids Helping Kids, Tic Relief, and My Love For Chemicals

This week has been a good week. I've been down hard with the flu. The silver lining of the flu is why it's been a good week....I've been upstairs in bed for 4 days has made me realize that all our hard work has paid off. Without mom, they can take care of themselves. They've made themselves eggs, cereal, and heated left overs for dinner (DH at work). Sydney said Leo helped her pour the milk....Showered themselves without complaining (they usually do), and remembered to pack snacks for the next day. My DH can make lunches and get them to the bus in time. I guess if I die from this flu everyone will be just fine!

It all started downhill after I threw up in the car on the way to pick up the kids AND A PLAY DATE from school (our bus is allegedly, and I say allegedly, too small). Did I mention it was a busy road and I had to quickly dart over to the side? (I know, insert violin music here). The mom picked up Leo and his friend and had the play date at the other house.

I'm finally turning a corner thanks to my homeopathic remedies - I think perhaps they've shortened it a bit (4 days?). I usually don't "do" the flu, so I don't know if that's short or not. I was really sleepless and in pain for those days. But, the BIGGEST thank you goes to my NEW BEST FRIEND AND ADDICTION.....Gatorade (insert "Hello Darkness My Old Friend"). Chemicals rule man! I got teary when my last bottle of the blue one (yeah, way natural), was gone. I do love Fruit Punch & Berry though I have to say. Without the chemicals, sugar, and oh yeah, the electrolytes, who knows where I'd be. Those Excitotoxins will be hard to get out of my tastebuds, but I'll worry about that later. I love Gatorade and who gives a shit! But seriously, is there a healthy alternative? Please let me know if you have one!

To my relief I found a remedy to really work for Sydney's mouth tic. Incredible! There's just a tiny hint of it when she eats, but other than that it has disappeared. Two for Homeopathy for this week. Sydney was so happy, as the tic was really bothering her. My normal onslaught of immune boosters didn't nip it in the bud like it did last fall. It is a different tic I believe associated with Fifths Disease. I've posted about the kids' reaction to strep as facial tics before, and the mouth tic for Syd has been around for a few weeks.

My conferences were scheduled for yesterday. I didn't cancel, hoping I'd feel a bit better since I just didn't want to wait to hear how Leo was doing. After all, I've been waiting for 3 years for this moment. The conclusion of this marker year. Will he need services in the near future? So I busted out the Vitamin I (Ibuprofen), and threw back three, and took a shower. I felt pretty good, just clammy, so I went on to the conferences. DH was away.

Sydney's conference was first: Everything was great across the board. A good student, a good listener, ahead academically. I asked the teacher about her attention since she seems a little disorganized for her age. She said she is a little messy, stands up for cutting and gluing, etc. Teacher said, "Interesting to see in a girl. You really don't see that." In my mind I shouted "It's totally normal when you are wired like our family is!" She goes on to tell me she recently partnered Syd with a girl that is a little behind the class. The teacher says, "She gets to play "teacher" to her. She's very helpful and patient with her." I was pleasantly surprised to hear this. She doesn't show a lot of patience at home, and she's all about chatting away with her friends. I'm very proud of her, she's becoming so mature! But my DH pointed out how she grew up with therapists teaching in the house. That's been her example her whole life.

Insert nausea and constant sweating for Leo's down the hall. Everything was great across the board here too. Doesn't seem ahead academically, just a 3rd grader in the top groups. I don't want to say the n word, it's just to foreign to me. Normal? I don't know. Nothing to say about the standardized testing or anything else. His handwriting great (still amazing to me since he could barely grasp a marker at 4). Socially, great, although he has to "watch the chatting". She went on to say she moved his seat because of the chatting (my frightened little boy who feared other kids).

She moved his seat next to a boy she says needs a lot of support and that it's been working out nicely for both. Leo gets to help out his friend when he needs it. "Leo is a very good example for Marshall, a kid that needs extra help", his teacher says. "Leo is always there for him, saying positive things. He is always reaching out to others to help at any time. He has such empathy for others, a very sensitive boy. And, he never seems to have a bad day."

Such nice things to hear about kids, let alone your own. So both my special kids are helping their friends in class. I couldn't be happier right now.
Posted by Ashley loves Leo at 9:49 AM
Labels: 3rd grade conferences, facial tics, Gatorade, tourettes
7 COMMENTS:
Jenn said...
"Handwriting great...chatting...reaching out to others....empathy" All of those words jumped out at me when I was reading Leo's report. I'm beaming from ear to ear for you!

Kudos to Miss Sydney as well! Hope you are feeling better. Have a great weekend :)

7:48 PM
Ashley loves Leo said...
Thanks Jenn. I'm very proud of the brood.

9:27 AM
Anonymous said...
I don't believe in recovery from true autism and feel that kids, such as yours, would have done well no matter what. I have seen several kids diagnosed when they were very young and (unfortunately) received no therapy but managed to emerge from the diagnosis anyway. I think there is a population of children like this that are truly not autistic. I have also seen other kids that are given years and years of high quality therapy and make very little progress at all. Anyhow, congrats on the fact he is doing so well.

1:06 PM
Ashley loves Leo said...
Hi Anon. Thanks for your congratulations. I really appreciate it. I too have seen kids get "everything" but with very little improvement in removing their disabling symptoms. It goes to show you how different every person is, which is why looking at all the viable options regardless of presentation is important in my book. A tall order during these times of demand exceeding supply, usually a hard fight to find and fund.

I haven't seen spontanious recovery as you've described, but have heard it happen in a tiny percentage. That's interesting you've seen it, very cool. Always good news to see progress! Unfortunately, Leo wasn't one of these kids you describe.

For us, Leo made no progress without the aggressive 24/7 biomedical and therapeutic intervention. I saw time stand still and often regress without it when there were gaps, problems, etc. We've lost 6 months to a year's ground on occasion. Summers, a common complaint, I'd feel ill just preparing for. Once Leo went catatonic going off the GFCF diet for just one day. Very sobering.

The good news is that dramatic progress can be made these days by wonderful treatment that's been tried and true - not EVERYONE as you've pointed out, but for many many children. Each day I celebrate progress in all ASD kids.

1:42 PM
Laura said...
That's great to hear! Not about the flu, but the conferences. And great that Sydney's mouth tic is going away! I hope you are fully recovered from flu now.

The chemicals - I have recently discovered how little I can handle them, or artificial stuff. I had some of Harrison's Starburst jelly beans from his Easter basket last week and got a headache within minutes. I tried again the next day -- same outcome. No more artificially colored junk for me. Not that I really will miss it, but I used to be able to suck down the junk without a care!

3:53 PM
Ashley loves Leo said...
Hi Laura. Thanks for the positive comments!

My old favorite chemical food is Hot Tamales. I can wolf down one of those boxes during two installments of General Hospital any day! Sure, can't quite feel my tongue the next day, but who cares? I've noticed I've become more reactive in my old age. I'm trying to reverse that with doing various detox. It's really helped my energy level and mood swings.

Oh, and the mouth stuff has come back - a littel different now. I think we've unleashed something that's bothering her - a virus, a parasitic something. I am trying to get to the bottom of it....sucks!

7:06 PM
Kristin said...
Hi! I just found your blog and have enjoyed reading a bit of it. Congrats on the fantastic conferences...that always makes a momma feel good! And hey, when you have the flu, you're allowed to ingest chemicals; anything to get through it!

10:29 PM

Wednesday, April 23, 2008
Coming Out Of P.A.N.D.A.S. Season
So we just got back from a week away in Arizona. I looked forward to the break, but even more so to see if Sydney's facial tics would be better in a hot, dry climate. My regiment or the fact that it is getting more spring-like seemed to be helping, but the tics were still present. I was nervous trying my new regiment off-site since it's a homeopathic protocol that requires lots of clean water, cups, etc. Sydney's symptoms improved a small amount, then got significantly better when we came back to the east coast. I am just happy that she's so much better and that her tics are barely present. I also got validation from a pediatrician friend that western medicine doesn't recommend medication for these type of tics, as they see them eventually go away. They only recommend it for classic Tourettes.

Leo has a blink here or there, but that's about it from him. After years of being afraid, I finally decided to revisit a metal detox. We had done everything else, but metals still persist although much better. I know in my heart that these detoxes are the only way I can minimize toxic overload. It sucks, since I must continue to do these as prevention. That's all I need, another major neurological disorder to deal with. So whatever I can do to prevent it and maximize health as much as I can, so be it. Their doctor has no advice, but to monitor it.

So this week we started. No effect so far, the usual response for Leo. It takes him about a week. I'm also hopeful that the groundwork we've laid the past two years will be uneventual with the metals. Wish me luck, if anyone is out there listening. I am also planning on doing it once I am over a virus that is still with me.

On other topics, we had an interesting reminder of how things used to be while on vacation. Leo and Sydney swam about 4 to 5 hours every day for the whole week. On our last day, Leo was drying off and my DH noticed a puddle of red water undereath him. We both jumped up and begin questioning Leo while looking for a cut. He didn't feel a thing! I quickly got irritated with Leo (which I regret) since he wasn't helpful and for a moment I blamed him for the situation. This is my blog, so I can be honest! Anyway, we quickly found the culprit, a blister that burst under his big toe. All of his toes were red and raw from all the getting in and out of the pool. Leo was amazing and helpful, and even didn't whine about having to wear a Hello Kitty bandaid, the only thing I had. Of course I had bandaids, kleenex. Mom artillary.

Shades of years of major hyposensitivity in his calves, feet, arms, face, and hands. Leo used to be deathly afraid of swimming, had to wear weights on his calves to train his mind to feel them in the water. He was afraid of drowning, and hated splashing and getting his head wet (hypersensitiviy in his eyes). He also feared going upside down.

This week, I saw him go upside down, head first down the water slide with 4 other boys his age following behind him. His idea. I saw him play football on the grass with these same boys, initiating what to do next. He even skipped snack with no consequence one afternoon, his hypoglycemia under control. Leo also decided to join me and Sydney for a trail ride. His idea. He narrated out loud as he does, his initial fear and discomfort with the movement, the unpredictability of it. The flies, the glaring sun, all the chatting, taking it all in stride, dealing with all that input at once. Hypo and hyper sensitive still perhaps, but it doesn't stop him, as Artemisia says. I am forever in awe and amazed by Leo's determination and strength.

Sunday, June 29, 2008
May and June Highlights
Third grade ended with nothing exciting to report. Our final Parent/Teacher conference was more of the same. He ended his marker year with anonymity intact and no learning issues. His talking out-of-turn seems to be under control, as it hadn't come up on the report card or the conference. Even in math, a topic that prompted this to happen last year. Leo had a different teacher for math, and while she said he is a "talker", it didn't appear to be an issue. Without arising suspicion, I casually asked about how Leo seemed to do with the standardized testing. She said he did great, whatever that means.

But, paranoia aside, I think Leo's 3rd grade year was a success both academically and socially. Most importantly, he's a happy person that is confident and secure in his environment. What else, really, is a mother to want? He's now viewed as one of the "older" elementary school kids. You'll find him spending most of his time surfing for 70's classic rock music on ITunes, his new favorite genre thanks to Guitar Hero. At school, they made CD trades of music and bartered sharpened pencils for cough drops, squishies, and yellow highlighters. He's saving his allowance for a pair of D.C. shoes, and prefers to only wear sports shorts with those slick exercise shirts that look like sun shirts. I can barely keep up. He gets a few calls a week, mostly from his 3rd grade BFF. They trade Bakugons and scheme about how to get more from classmates at school.

Pool Politics: I've seen a snapshot into the future so far as I've watched the "gang" of 8 to 10 year olds at the local pool. They move in a pack, back and forth from the water to the sanded volleyball court. They spend about 10 minutes "debating" during the transition about what to play next, how to divide into teams if needed. The group leader is a boy that Leo went to preschool with. Back in the day he wasn't a very nice boy. We had a bus incident early on in 1st grade with this same kid. Today, he's not one of Leo's preferred boys to play with, but will play with him if there's no one else.

I see Leo right in the middle of it all, participating, waiting. I can't hear what they are saying, but I see him and I am in awe because he looks content and natural in the group. I'll never forget what he used to look like and how he'd struggle joining a group. He used to be always one or two steps behind as his playmates had already moved on. He'd still be playing dinosaurs while the boys had moved on to transformers.

Leo doesn't seem to miss any cues, goes with the flow, often playing something he doesn't really want to because he prefers to play with the group. Funny though, he'll often break off with one or two boys and do something else if the discussion takes longer. I wonder if this is typical, a preference of how much politics you want to put up with. I asked him if he understood what was happening, thinking maybe he was missing stuff. But it appears no, he was able to fully explain the situation and said it was "boring" to wait for it all to work out. When asked if he'd share what HE wanted to do, he said yes. I can believe that because in small groups of 2, 3 or 4 boys, he'll often iniitate ideas and naturally take the lead if they let him.

At the end of last year, he'd come back by himself sometimes if things got heated - say, the 5th grade boys taking over the court, if the arguing went on and on. It seems to bother him less, and it seems like he's comfortable enough to find something to do, with our without participating in a large group. Leo will always avoid conflict if he can. He said "we were here first" for the first time. But if the 5th graders don't budge, he'll walk away and complain it's not fair. As his mom, I know it would be suicide for me to say anything. If this continues, I'll have the pool manager observe and remind the older boys not to act like bullies and share the court.

Conversations: Leo and me (and dad) have had amazing conversations recently. So interesting how time goes by and we can go another layer deep about the war in Iraq, the election, and other current events. I'd find him looking at the election coverage on CNN up until Hilary lost. He loved voting this year as always. Like many kids feel, Leo thinks war is stupid.

Still A Kid: I've appreciated watching Leo still play Webkins with his younger sister. They've made up their own very sophisticated world where they 'babysit" each other's animals, and take on these elaborate personalities for each animal. He loves to play with the dog in the kiddie pool, play in the mud with Sydney, and still plays superheroes with some of his kindergarten friends.

Theory Of Mind Tidbit: We somehow started talking about Leo's classmates, and he began talking about how his teacher calls on certain people in certain situations. He noticed that a boy that never raises his hand will get called on the rare time he does do it. He seems to know the pecking order, and who favorites are, etc. None of it seems to bother him a bit, and finds it interesting. He is certainly a real behaviorist now.

Brain Fog and Face Tics: We had our usual couple day visit from "brain fog" where Leo acts like his old self and has an off-spectrumy day. It's still very distressing when he's that out-of-it. Our homeopath is close to recommending a remedy that will address it. Leo's tics came back the last month - they are not as strong as last time, and I've found a couple of homeopathic remedies that really help. My hope is that we can nail the tics permanently - I am positive we can do it! For Sydney also - hers are worse.

Little League: This was a great experience for Leo - he played AA and really learned how to play better and consistently hit the ball. He looked forward to every game and every practice, even riding me about getting ready and being there on time. It was really fun watching him this year while chatting with the other parents. I still am amazed by him, a kid that was so fearful of the ball and had a gazillion hours of OT and PT to get over numerous SI issues.

Yale: We had a very positive but draining experience at the Yale Child Study Center. Leo participated in a Longitudinal study and a couple other studies for ASD kids. Leo officially lost his diagnosis, which I'll be posting about later.
Posted by Ashley loves Leo at 3:43 PM
2 COMMENTS:
~Miss Nelson said...
YALE!! I am in CT.
I am looking forward to reading about Leo losing his diagnosis. Sounds like you have had a very busy ending of the year.

Taking the lead and initiating activities is great, and I think it is very typical of him to be bored if they are taking a long time to figure out their plans. Leo sounds amazing!

3:12 PM
Jenn said...
Ashley,
Amazing stuff. YAY Leo! Thanks for sharing...I look forward to your updates. They keep me going and give me hope! We WILL get there! Looking forward to your next post.

7:50 PM

Sunday, June 29, 2008
Back To Yale
Yale contacted us to see if Leo could participate in a couple of longitudinal studies that required children born in 1998 that had made progress. I am not sure what their criteria was for progress, but the invitation to go made me investigate this possibility of going back to ground zero. Cutting to the chase, Leo officially lost his diagnosis by Yale, the evaluators that originally diagnosed him.

But here is the back story...Yale diagnosed Leo at 24 months, and assessed him two other times (at 3 and 5). I am eternally grateful for their comprehensive testing and detailed lengthy reports. Our springboard to direction, and eventually goals and objectives that would be carried out by various therapists for years.

At our last evaluation, Leo (just turning 5) still met the diagnostic criteria for an ASD. I didn't care so much about that, but what may have been uncovered during this evaluation that would help us hone in on therapy. After all, this was our 3rd year of preschool and I wanted to perfect his program so that he could go to elementary school with as little support as possible. Yale gave us his current deficits which validated our direction and our goals. It wasn't until 6 months after that eval. our therapy team said we need to construct a "fading program". In the midst of litigation and getting our house appraised for selling (so we could afford it all), I wasn't capable of believing anything as crazy as no therapy.

But, it indeed happened a year later. Leo was no longer disabled as far as we could tell. There was nothing left to teach him. He still had struggles (see previous posting), but he was happy and learning with no support. I had to let go of those precious daily records provided by our shadows. I had to let go of knowing that Leo was taken care of.

Interestingly, I routinely got emails from parents, therapists, and teachers, asking me if I ever got an official from a doctor. I said no, that I didn't feel I needed that. I learned to trust myself and the therapy team to decide what Leo needed. It bothered me though, that the skeptics, my "fans" didn't believe that Leo was functioning at this level because I am just a mom saying so. It still blows my mind how educated smart people will only believe traditional doctors.

After a little soul searching, I let go of my desire to prove our outcome . A fight I can never win. A person has to be open and accepting that our kids CAN make dramatic progress, can even recover, when they are given what they need. A person has to look beyond their own experience and their "baggage". I entertained it for a couple weeks though, thinking I could drag Leo out of school and spend five thousand dollars on an evaluation that wouldn't serve in his interest. No thanks. I figured I'd save the money for when he really needed it.

So here I was with an invitation for a free evaluation. What's a mom to do? I weighed the pros and cons.

Pros: 1) A free evaluation that may provide us with deficits that are now apparent 4 years later. 2) It's the right thing to do. 3) Because of Leo's anonymity, I can't shout out to the world what has happened with good ABA and the diet. No hocus pocus. Just the stuff you hear about day after day. I knew telling Yale (I filled out a 10 page form just on his therapy schedules) would be a way to shout. Telling them will go a long way. After all, they are doctors.

Cons: 1) P.T.S.S. for me, exhausting for Leo. 2) I may have to prematurely tell Leo about the label of Autism. That there is a name for all the stuff he knows about himself. Our plan was to wait until he needed to know, taking cues from him. 3) I questioned whether it may be too much to ask of Leo. He may miss a Little League game, he may feel it's so much.

After having long talks with him, he said he wanted to do it. So I prepared for our action-packed two days at Yale. Leo liked the fact he'd get an ITunes gift card for his participation. He did the ADOS and the CELF while I did the ADI and the Vineland. I filled out other measurements - parent and behavior. They were fascinating. I must have filled out almost 20 different surveys on top of all the interviewing. It was exhausting. Leo did an EEG, we both did blood tests.

The first day the evaluators (totally 6 in all including our "handler") seemed aloof and wary. I thought, hmm....scientist personalities or what? I insisted on meeting with our initial evaluator, one of the people that originally diagnosed him. I immediately burst into tears after not feeling teary all day. The meeting was a little forced, Leo didn't remember her, and it was hard because I couldn't talk about Leo since he was with us.

The next day seemed a bit better. I ran into that original evaluator and she seemed more available. I was able to take her aside and share the good news about Leo's functioning level and thank her for all that she's done for us. It was a great conversation, I felt I shared what I felt I needed to say, and I felt like I had some closure. At the end of the day, I got an unanticipated "wrap-up" where the lead evaluator went over her observations. She was very warm and friendly and immediately told me Leo no longer meets the diagnostic criteria for an ASD.

I wasn't surprised by the news but it got me teary. It's not all in my mind or something. I was really shocked because she was able to give me this information when I knew the testing was for their research, not specifically for us. She also told me this is so rare to tell a parent this news. That they regularly tell parents their child still has symptoms of Autism. Their behavior all made sense to me now - they didn't BELIEVE me, they just put up with my high-maintenance requests about anonymity and not using the word Autism around Leo. There was a shift in the air - the entire team seemed very happy.

They also noted that Leo appears to have a visual spacial processing deficit. She wasn't exactly sure what it means yet, but was going to process the testing and consult with the other evaluators. This area tested within the normal range, but with approximately a 20 point deviation away from all his other numbers. This led her to believe there may be an issue. Leo may have non-verbal learning disorder. Or it may be a milder deficit. I'll find out soon when they send my a write-up, another pleasant surprise. I love facts and figures (no surprise, right). They'll have 4 assessments to compare. I won't be thrilled if there's a new disability to learn about - I am already busy working on a new degree in Homeopathy and my endless search for my children's facial tics. But I know I have no place to complain.

For now, there's nothing to do about this deficit. She thinks perhaps high school math may be a problem. I love having this information - I can prepare. If any parent can take away any learning from reading this post, look how valuable it is to have regular assessments done. Expensive, hard to find at times, but the pay-off is exponential.
Posted by Ashley loves Leo at 11:04 PM
Labels: assessments, autism recovery
8 COMMENTS:
Anonymous said...
It's just very hard to believe he was autistic to begin with. I really think some kids are misdiagnosed and parents are fooled into believing they are recovered. Just don't buy this at all.

8:40 AM
Anonymous said...
Congratulations! I'm so glad you did the followup study. It sounds great and I'm very happy for you.

9:32 AM
Maddy said...
I'm stumped for words. Yours was one of the first blogs I ever commented on, however long ago that may have been.

Maybe there's something in the title of your blog afterall. [I'm not being mean, just teasing.]
Very best, best wishes as always

10:38 AM
Ashley loves Leo said...
Thanks Maddy for your thoughts. I am always grateful for our connection via our Leos. You are so different from most people I "talk" to online. You are one of the most open, accepting, and non-judgemental people I know.

And the best to you and your lovely boys and girls! I look forward to catching up on your blog soon after I process all my insurance forms and pay bills. What "fun".

-Ash

10:58 AM
Laura said...
The follow up study sounds like it went well! You have the "official" word on Leo's no longer having ASD, and can learn more about whatever this visual processing deficit is at a later time! I had a problem with high school math, myself. :)

We're going to do an evaluation for a study at the UW next month. We'll see how that goes!

5:58 PM
Ashley loves Leo said...
Thanks Laura. Exciting that you're going back to UW. Yeah! I can't wait to hear all about what they say. He is doing so well!

7:23 AM
Artemisia said...
Hooray Ashley and Leo! I'm so happy. I remember when Boo lost his diagnosis I burst into tears. Here's to both of you!

Funny how they treated you; what kinds of things are they seeing in the study, I wonder? Parents in denial that their kids are still affected?

10:12 PM
Ashley loves Leo said...
Thanks Artemisia. It means a lot to have your support and understanding (the very few people out there!)

About the "treatment". I think they were talking about all the parents they see for evals, not for the study. She said they have to tell parents "all the time" that their children still meet dx criteria.

Either way, they were wonderful and I am anxiously awaiting the formal written assessment. I want to get going on the processing issue.

11:54 PM
Monday, September 15, 2008
First week of 4th Grade, He's Catching On

D.C. shoes are IN for both kids. They look like giant puffy clown shoes to me, but I guess I'm not the one wearing them!

Leo and Sydney got on the bus the first day of school like it was a normal day from the spring. No real excitement or anticipation, just business as usual. I, on the other hand, was fine until the bus appeared over the little hill, and my eyes started to well up. Sydney, now in 2nd grade, looks at me while reaching out to touch my shoulder, and says"It'll be okay, Mom." Leo, now in 4th grade, dutifully leaned over for an A frame and off they went, leaving me confused as to where all the time went. I logically know, but man, it's still tough for me.

Sydney and Leo are in the mediocre grades at our schools, they are both considered repeat/reinforcer years. 1st, 3rd, and 5th are challenging and demanding, they throw all the new stuff at them in these grades and let the dust settle in between. I kind of like this strategy, should be a fairly easy year with not very much homework.

But back to the first week, Leo HATES school. Each day he says how absolutely boring it is, and honestly I can't blame him. Now that he's older, they go to lunch later, and they have their specials first thing in the morning, so the day isn't broken up much. He tells me that he tries not to look at the clock, and when he finally does, only 5 or 10 minutes have passed and it "just sucks, Mom." I've been there, and he's finally catching on to the rest of his life. The cheerleading cushy fun energetic times are over I think. But I do like his teacher, a sweet older man, his first male teacher. He's very old school, very ernest, a sports fan, and has a dry sense of humor. It's probably a good fit even though he's not that exciting.

Leo learned that an instrument was optional this year and they do weekly pullouts, he signed up for violin just to escape! I rented the instrument, so hopefully he'll actually enjoy but either way I'm covered. I can already hear the violin practice....

The social makeup looks very good this year. A nice group of boys in Leo's class, including his BFF. We are thrilled because this boy is a great friend in every way, they learn from each other, and we like the parents. Leo is playing AAA fall ball and is loving it per usual. Most of the same kids, some a blast from the past, really fun. He's learning to pitch now, I really like how they take turns playing ALL the positions. I still can't believe he can catch a ball let alone play organized ball sports by choice. Leo takes his football to school every day, and they play touch football games at recess. A nice group of boys that broke off from a large group that are more competitive and aggressive. A turnoff for Leo, but the good news is that he isn't alone with these sentiments. He's happy with his friends, I am estatic about this.

Sydney had a good start, then got a flu that had her miss an entire week of school. She was so sick, I thought for a while she may have had strep or even Lyme. I still think both my kids have some sort of suppressed Lyme based on their makeup of face tics and environmental sensitivities. Her tests came back negative, but they wouldn't test her for blood, which is what I really wanted to see about Lyme. But they wouldn't because she had abdominal symptoms which in theory are not Lyme. Such a hotly debated topic that I need to learn more about. The silver lining was this flu caused her chronic symptoms to get better. After 5 months of chronic tics that kept changing and coming back, she has been tic free for a week. In this house, we have bouts of wellness, so I can say she is now well, no chronic or acute illness!

I'm still working on Leo, he has a minor cold that's almost better, and his tics are minor, about 85% better. We are on our way, a remedy that in theory addressed his underlying root illness seems to be helping. I can put him back on his regular remedy soon and see what happens.

So far so good. I'm still waiting for two big things - the Yale writeup and the standardized testing results that should be mailed to us over the next couple of weeks. With these two instruments I should have something to go on to plan for Leo's future support.

As far as I go, I'm busy studying for my homeopathy degree and slowly updating my main website, www.hiddenrecovery.com, in hopes I can finally publish an article I've ignored for a very long time. I just need to do it. I am feeling pretty good about things these days, the kids seem happy which makes mom happy. I can't complain (well, other than about Sarah Palin or the economy crisis).
Posted by Ashley loves Leo at 10:50 PM
Labels: 4th grade, face tics, lyme, mainstreaming, strep
1 COMMENTS:
Jenn said...
Ditto the Sarah Palin and economy crisis comment! I'm so happy the kids are both doing well. Can't wait to hear about the Yale reports.

9:38 PM
Monday, September 22, 2008
Standardized Testing Results
I had a big mommy day on Saturday. First, my 7 year old daughter annouces she's finally read to get her ears pierced (I've been waiting....). Then, we come home to find Leo's standardized test results in the mail. A wave of nausea and anxiety kicked in while I sit in the car and open the envelope. Here are the results:

Overall Results
Leo scored at goal level on all 3 tests (Reading, Writing, and Math). Goal level is level 4 out of 5 levels. I am so proud of him! What the results mean I'm not sure. We have definite areas where he tested low which brought down his score significantly. Is he testing close to what he knows? Not sure. All I know is he knows how to take an inane bubble test. Here are the details:

Math
Leo: 257
School Average: 265
District Average: 276

He tested low on these subtopics:
Customary and Metric Measurements
Integrated Understandings; Math Applications
Both of these areas make total sense with visual spacial problems.

Reading
Leo: 250
School Average: 256
District Average: 257

He tested low on these subtopics:
Examining the content and structure

Read comprehension raw score: 29 out of 40 (not sure if this gap is typical or not.

Writing
Leo: 274
School Average: 268
District Average: 272

He tested low on these subtopics:
Composing/Revising

The good news is that he is testing within normal range! And to top it off, I have some low results to guide me for specific support when Leo needs it. I'm going to research these areas along with anything the Yale report says to put together stuff for when we need it. Yeah! Nothing like being prepared, if only the rest of my life were like this.

I am wondering if there is any downside to sharing the results with Leo. I don't see any, I've always been honest about his challenges. Just not sure, what if he starts to compare results to his friends at school? Not that it should matter? Or should I protect the baby as long as possible. I'll have to think about it. Anyone, anyone?

8 To 9 Years

2007-04-01T08:03:00.000-07:00

October 4th, 2006 (2 weeks shy of 8th birthday)

So I wrote before that I worry about soccer. I still worry, but I’m happy to report that Leo is doing great! He is right in the middle when I compare the other children. It’s so interesting – he’s the tallest kid on his team by far and has the largest head(he must wear an adult baseball cap). Too funny! His size can be an advantage if hecontinues to improve his understanding of the game. Just being in the right place at the right time will help deflect the ball or other kids having to go around him. He’s a slower runner and is pretty fatigued when we get home, but seems full of energy while we are there at practice and at games. He scored his first goal of the season last Saturday. I couldn’t believe it. I’m actually happy that I didn’t see it in person (I was at Sydney’s game, divide and conquer), as I didn’t have sunglasses on and I might have seemed a bit crazy. He actually received a pass from another player, aimed it at the goal, and kicked it in. He was fairly close to the goal, but who cares?

Every time I see him on the field I just can’t believe it. It’s so surreal. I am very proud of him because he has such drive, he’s overcome so many sensory issues to get to a point that he can play. He’ll squint a bit when lots of kids are scrunched together trying to kick the ball, but he remains there and tries to kick it too. The best part is that he loves it! I can “see” him thinking – he’s negotiating the ball down the field attempting to multi-taskby looking at where the other players are. Tough! He’s not great at it, but again he’s like all the kids. He’ll kick it so hard, sometimes with really bad aim – I love it! It’ll be interesting to see how this improves (or doesn’t). I know I couldn’t do it!

Everything else is quiet – Leo reports he’s talked out of turn just 3 or 4 times and thinks he’s better than in 1st grade. We’ll see during conferences. I am one of the chaperones for next week’s field trip, so I’m sure I’ll havea much better idea of how the class is doing, the class “personality”, since this will be my first glimpse. I can’t believe how I put up with the mommy politics in order to volunteer for the few opportunities in 2nd grade – what I do for Leo he’ll never know! And poor Sydney, I signed up for nothing.

He's been squinting a lot while at school because of fall allergies - it slowly gets better at home. I've been clearing him at home using NAET, but it only holds a few days - it's been tough to get to our Bioset person. I'm hoping to put a jar of water into his classroom to attempt to catch the particular allergen (pollen, cleaning stuff, who knows), that's bothering him. It never ends - but the good news is that this is the first year where he is rarely affected by fatigue due to Bioset (it's the only thing we've done differently).

So there ya go!

Look Out, Mom's Loosin' It
November 14, 2006 (8yrs 1 month)

Leo had a great birthday (10/15). His father and I didn’t even have to speak about what was going on inside our minds. We are so proud of him! Now that he’s 8, we’ve graduated to the small party of good friends. Phew! I sat back and admired his friends. And they are good friends! Not just one, my only hope for him at one point, but several. They are complex, well-rounded kids that are each different in their own right. His hard work is never forgotten. Every day I remember where we came from. It’s hard to believe that just 6 years ago he was officially diagnosed with PDD-NOS and just 2 years ago he was therapy-free going to typical kindergarten.

Leo continues to enjoy school. He still much prefers his 1st Grade teacher, even after 3 months. I’d have to agree. She’s friendly and funny, but not warm. Does that even make sense? On his birthday we brought in Yankee cups full of fresh fruit. Yes, I’m “one of those moms”, those fruit bearing moms that Kristina Chew references on Autismland. Ha ha! Here are a few examples of her lack of warmth and enthusiasm. Is she burned out? Has she lost that lovin’ feeling? You decide...

As snack time was approaching, Mrs. P said to Leo, “well, I guess we can do your birthday now to get it over with”. She also sent the snack trays home with Leo on the bus after I sent a note saying I’d pick them up. She said to Leo “I’m tired of them being in the classroom”.

During a field trip to a beach, not once in the 6 hour span did I see her take joy in seeing the children discover new things. “Hey look what I found Mrs. P!” was rarely said. They got her number. Of course they all circled like flies around me and the other chaperone moms on the trip. With wonder, they all screamed, giggled, and ran around with excitement. Some had never seen a jelly fish or a crab, let alone hold one.

Many talks later, I have to believe that Leo is telling me the truth – her words aren’t hurtful. “I’m fine, Mom. I don’t care, Mom.” And then it’s the old catch 22, should I worry it DOESN’T bother him? Or maybe it does but he’s concealing it? He’s gotten quite good at acting these days.... R>He likes Mrs. P but doesn’t LOVE her like his old teacher. He’s happy. I have to believe him. I told him we have options, but he declined all of them. I’m going to “say something” during the conference on Friday, but I’m not exactly sure what. I want to scream “look lady, hundreds of thousands of dollars, countless hours later, Leo has excellent self-esteem and confidence . If you fuck it up because you can’t muster a fake “happy birthday”, your dead”. I know I’m evil! Today I felt those panicky old feelings creep up again as I saw Leo’s report card lying in his home folder. My head was
swimming, the vacation is over. I started making plans to get his old ABA team back in my head. I began practicing my spiel for the kids and the moms why Leo is no longer free for play dates and now needs a shadow again. I began practicing my 2nd grade definition of Autism. I felt cold. I finally opened it and I could barely see the print. I was so freaked out! Finally, there it was parked under the heading “Personal Development”. It jumped out like an old friend does. Self Control. And next to it a -. A minus which means “needs improvement, not where it should be”. Nothing else noteworthy, just that. I should be throwing Leo a party. Handwriting, reading, math, everything else with a positive mark. No need for what I was thinking. I’m the worst mommy in the world for thinking like that. I suspect it’s the same challenge as 1st grade – it’s the calling out, talking out of turn like last year. And thus it begins, the agonizing countdown till Friday when I have my parent/teacher conference.

Same thing, different year and teacher. Will she realize that Leo is different? Will it make a difference? What will her version of the executive functioning deficit be? What will Self Control mean to Mrs. P? Will she guess he has a disability? Will the jig be up and he’ll be treated like a toddler?

We’ve had quite a few days off due to professional days and holidays. Leo prefers going to school instead of being home those days. Weird? I don’t know. For a child that likes routine and likes seeing his best friend in class rather than staying home, unstructured, with his little sister....sounds predictable. He was a little bored, whiny, and irritable. He relishes his weekends which is pretty much the same thing, other than the fact that Dad is home too. It does bother me and makes me question his schedule.

Leo’s little sister swallowed her first pill, a B vitamin. Still a challenging task for him. What I loved was his response. He came into the kitchen and watched Sydney and me jumping up and down. He looked at her and smiled while watching her “moment”. A few minutes later, I offered that he could try swallowing pills now if he wanted to, and he declined. He said “No....I’m just a little jealous, that’s all”.

What a big kid – he signed for a UPS box.

I know I’ve jumped around a bit, but that’s how it is for today. Lot’s of stuff floating around in my head aching to get out.
Stay tuned – only 42 hours until the conference!

Good Things to Remember While Waiting 11/16/06

Leo spontaneously summarized his standing in class the other day during dinner. Dinner, the 3 of us, happens each nite around 5pm. Dad comes home later, round 2 for them - some fruit, perhaps a little dessert, and daily supplements mixed in yogurt. Anyway, he began sharing how he admiredhis new friend Jack that sits next to him in class. We've never had Jack before, and so I had no preconceived ideas about him. Leo began saying he's"the smartest" kid in class, giving some examples. Surprised, I asked him to define "smart", and how he felt about that. Leo said Jack knows pretty much all the answers, reads and writes really well, and is excellent in math facts. I could tell he was really impressed, but not envious. I asked what he
thought about himself. Did he feel he was doing well? He said he thought he too was "one of the best kids" but not "THE best" in class.

His awareness astounds me. He's figured this all out on his own - that in a class how people measure up and how teachers and other kids respond toit. I've never asked about this. I've never wanted to fuel any competition. I've only focused on how HE feels about himself and his accomplishments, focusing on trying your best, and reminding him that each person is different and good at different things. And when he's sound arrogant at his natural academic ability, I remind him about humility, showing-off and the consequences, and other stuff like that. And, that we all have our challenges like his talking out-of-turn. And mine is yelling!

Leo also notices how some kids don't try their best. Some goof-off more than others, and some get in trouble more than others. He's got everyone's number in his class, or at least those that sit at his table. He even gets irritated by his best friend because he pretends to read his books from his browsing box during reading time. Leo said he always "really reads" because he wants to get better and do a good book report afterwards.

Leo is no saint - he shared this morning how he and his friend sneak past the hall monitors and go through a different door to get to their bus early. They make a game of it and see who gets there first. I like that he knows the system at school and finds ways around it, even when it's breaking a rule. Love it!

Okay, back to obsessing....And why do I obsess? I must monitor Leo's progress to see if he needs some type of servies again. I have to be realistic - something may crop up that is disability related that needs support. It never ends!

29 hours left until my Parent/Teacher Conference. I still have no clue what I'm going to say regarding her lack of encouragement. I may point out that I've noticed his writing is subpar to what I saw day after day in 1st grade. He does just enough to get by. Leo was so inspired last year! He'd write on and on, and he was one of the top writers in his class. His work was often the example for class - embarrassing him by reading his work to the whole class. As you can guess, I relished the part about being embarrassed the best! Those emotions, indicating he gets what's going on around him, interpreting them accurately. What more could I ask for?

I'd have to guess at this point she still doesn't know him - has no idea what he's capable of. I don't really know how detailed they go when a teacher passes info on to the next. That's a lot of stuff to read for 22 kids, but hey I think it's important. Speeds up the learning curve, and sure, it may give impressions that may not benefit the child.

Sydney's conference for kindergarten is right after Leo's. I hope I can be present enough for that to be productive. I want to be there for her, and really get a feel for how she's doing and if there's an issue.

November 17: 2nd Grade Conference

So I finally made it into the classroom with my old friend anxiety, my empty stomach, and my husband for a guest appearance. Our 2nd grade Conference day finally arrived! 1:45pm seemed like forever to come. Mrs. P got right to it by showing us Leo's journal - answering the question about Self Control. I noticed right away she gave us no eye contact. No eye contact. Of course this made me nervous as hell. Later, I realized it's her personality - maybe she's bit shy. Maybe she's been beaten down by parents over the years. Who knows.

She had asked the kids the question "What do you think your parents will hear about you during your conference? My first thought was how this could be a bit stressful for the kids, making report cards more important than they should be when they are only in 2nd grade. Bluch!

Leo's response was something like 'I think I am a good student, that I like math and reading a lot, but that I need more self controll'. Mispelling included, just like his mom, ha ha. I'm so proud! It turns out that Self Control with Leo is "blurting out" comments due to excitement about a topic. More than the average kid in class. So that's my answer. Mrs. P has to "remind him" to keep his thoughts in his mind. He doesn't finish her sentences or answer questions when not called upon like last year in 1st grade. In my eyes, it's a significant improvement.

To my relief Mrs. P gets Leo, but doesn't "get" him, just yet anyway. I know it's been only 3 months. As you may know or not know about me, I'm quite a linnear thinker, and to me, people (parents and educators in particular) are either natural behaviorists or not. Does one see cause and effect effortlessly and naturally? Does one see where the root of a behavior comes from?

Mrs. P is not a natural (more on this when I write about another topic - the other ASD kids in 2nd grade...) She sees the surface and addresses just that. Kind of like a pediatrician now that I think of it. Treating symptoms rather than the cause. As a teacher friend pointed out, you can't teach someone how to be a good teacher, you either "have it" or you don't.

I am happy that Self Control isn't debilitating for Leo in 2nd grade. It's not keeping him from learning. It may be a slightly irritating to others, but hey, a far cry from what it could be. I'm happy that Leo is aware of his issue, is not embarrassed by it, and doesn't keep him from having a fairly "normal" day as a 2nd grader.

Question 2; Leo's writing is mediocre. Specifically "Writes with elaboration and includes details" got himself a "Some progress noted".How did he go from being one of the best writers last year to just mediocre? Not that I'm surprised. I was surprised last year that he did so well in this famed "imagination" category for ASD. I realized that Mrs. P gives more open writing assignments, and last year's teacher gave more structure and prompts. Actually, Mrs. P let us read one story about Leo's experience on a beach. It was so good! I then realized it was good because she referenced using their senses. Duh, lady!

Mrs. P.said she dislikes the more structured style of teaching writing. She thinks 2nd grade is about getting them more comfortable about writing, and that it's a review year - gearing up for 3rd grade, the CT Mastery Test, and so on. This isn't my area of expertise at all - 2nd grade curriculum, but my instinct tells me that, at 7 and 8 years old, wouldn't providing some structure help build comfort in writing? Maybe one of my writer readers can answer that question for me.

All in all, she said he's a nice boy, compliant and respectful. My husband asked how he was with social interactions (I was too freaked to ask). She said she thought he was fine, that she doesn't get much opportunity for observation since they shortened recess. She doesn't see them at the specials or lunch - she picks them up and drops them off so she can have her 20 minutes of peace. Boy am I happy that I did all that volunteering last year - I was there 2 times a week for recess, lunch, and library time. I got such a good feel about the social groups and dynamics, and how everyone was doing. And it was very educational to see what 2nd graders are like,
and that Leo is just one of them - just eating a GFCF lunch!

I didn't get a chance to process what had happened - that yet another year was turning out well, that our issues are manageable andnot problematic. That Leo and his teacher are happy. I didn't get an opportunity to say how her lack of enthusiasm isn't good for Leo. We ran out of time, and I decided to not make an issue of it - I saw it's her personality. She's just not a dynamic person. She "phones in", as a fellow parent said.

My husband said he'll have more teachers like this than not, and he has to get used to someone like that, that's not going to be a cheerleader like last years teacher or us, or his former team. We realized again, after combing thru the curriculum with Mrs. P, that the 2nd grade program is fantastic - all 4 teachers basically do the same thing. The school is fantastic, and he's happy knowing just about everyone there. Not to sound like an optimist or anything! So we'll see how it goes - I may say something later.

We rushed out of there down the hall to the Kindergarten room to meet Sydney's teacher. We had only about 10 minutes left. Again, boy king is the priority. She showed us an empty index card, and said "See, I have nothing to say. No problems at all!". She then went on to say how she's a wonderful student and person. She's enthusiastic, enjoys all aspects of school. A good girl. I got teary when I heard that, but I think I was beginning to feel relief from Leo's meeting. Sydney's teacher also brought up the fact that she and Leo are so connected. It's rare, she said. They love seeing each other during the day, passing each other. Waving hi, giving hi-fives. Sydney always tells her teacher "I saw my brother! I saw my brother!". Her teacher knows Leo. She didn't have him, but knows him since the kindergarten classes have recess together. And of course, she is in the dark about his past. I feel so lucky they have each other.

Tuesday, November 28, 2006
Everyday Life in 2nd Grade
So Leo, Sydney, and I are in the car driving home from Sydney's Bioset appointment. She decides to call Dad on the cell
phone. She crosses her legs, and dials very professionally and gets him live on the phone. She's gabbing away about
her day (she's 5 1/2), talking very "grown up". Leo says, "Sydney loves to act like a big girl doesn't she Mom? She cracks
me up. She has her 'big girl' voice on." And I nod and smile in agreement (I am driving after all). Leo shakes his head and
chuckles "I certainly know my sister".

Love that Theory Of Mind working!

In the car on the way to school (late again), I overhear Leo and Sydney talking about Gary in class, how he gets mad all
the time. Apparently Gary (yes, he has an IEP)screams out loud at classmates on occasion, for different things. I say that
I like Gary a lot, and that he's your friend, and so what if he has things to work on? (talk about reverse discrimination).
That we ALL have stuff - Leo's talking out of turn, I have my temper, Sydney her her whining, etc. Leo says "I know Mom,
I like him too, he's my friend. Jeremy tells me not to like Gary, but I do. He's my Secret Friend." I respond by saying all the
right things - how no one else is the boss of who you like, and how you need to stand up for your friends. Leo says" I
know Mom, I didn't do what Jeremy said. Jeremy knows that Gary is my friend. I just don't talk about it."

Love that social judgement working!

Leo has never told me or his Dad about any girls he may have crushes on at school. Not in Kindergarten or in 1st Grade
either. He always gets very defensive and says he doesn't want to talk about it, that it's private. Recently I asked (I can't
help myself!), saying, "well, if you HAD to choose a girl to like, who would it be? I promise I won't talk about it or tease
you, nor tell anyone else." He held firm. I said, "Well, have you told anyone?" Leo told his best friend, and said his friend
will never tell.

Love that he keeps secrets and has a best friend! More social judgement, enriching relationships.

November 28, 2006 (8 years 1 month)
I had a VERY interesting day yesterday. Leo had his 1st grade "archnemisis" over for a play date! Could it be? Charlie (the bus taunter/teaser?) from my 1/27/06 entry?

Natch, I barely slept the night before because I was consumed by the fact that the boy that gave my son so much grief will be over! And I was nervous about handling him. The one time he was over, I failed miserably at managing him (in my defense the parents didn't give me a heads up, can we say PID??) He broke some toys, crashed Leo's bike into a tree after riding over my pumpkin vines, dumped every toy bin over, and scared Sydney on purpose among other things. How much can happen in one play date? A LOT.

Let me just say it. IT WENT WELL. SUCCESS AND NO STRESS. Woohoo! I don't know if it's going to happen often, but they do like each other and had some fun.

And now for some background on this duo...This boy Charlie and Leo were on "different teams" and "not friends" practically all last year, after their friendship quickly fizzled. Leo was quickly turned off by his very active behavior and that he got into "trouble" so much at school. Later on in the year Charlie and a mid-year transfer student Harrison became fast friends. Of course, because life is complicated, Charlie and Harrison ride the same bus and live on the same road.

So recently, Harrison didn't ride the bus for a couple of days. Charlie and Leo sat together, and I gather they "discovered" each other. They are not in the same 2nd grade class this year, although Harrison and Leo are. They both began asking for playdates, which terrified me. I knew from last year that Charlie was on different medication and doing well with listening and controlling unacceptable behavior. I'm guessing he's ADHD. So because I'd seen able to observe him, AND I really wanted success, especially with a neighbor, I wanted to make this work (like I have anything to do with it).

They didn't quite know what to do with each other for the first 20 minutes. I thought "Oh God!!!". Charlie kept walking around and around and around while Leo was patiently following him asking him if he'd like to do X, Y, or Z. Finally, with some suggestions from me, they began playing outside. Natch, Charlie found the only dangerous thing out there, a fallen tree that hadn't quite fallen completely (yes, danger danger)and decided to hang from it, and in 5 minutes, convince Sydney to climb it. Images of dead or trapped kids danced in my head. Yes, the part about keeping my eye on him the entire time...I
should've kept my plan intact. But other than that, they jumped on the tramp and ran around finding stuff.

I was pretty proud of Charlie - he has learned to listen and had some self-control. He also considered Leo's feelings and preferences. Not much eye contact, actually less than last year. Towards the end, I let them play X-Box (whatever that is). It involves the T.V. is all I know.

I couldn't believe it - I had prepared myself for anything - I had all my chores done including dinner. I had prepped Sydney that I'd have no time with her as I'd be occupied with the boys' safety. And it all turned out well. His mom came to pick up, and I told her what a wonderful kid he is, and that they had to refamiliarize themselves, but after that warmup period, they got along. Clearly they don't have too much in common, but both had fun. I was so proud of Leo - he didn't mention football, soccer, or any other sports games to do since he knew Charlie wouldn't be interested.

His mom has never mentioned Charlie's differences, nor have I mentioned anything about Charlie's history with Leo. I threw out several openings, but she didn't bite. Clearly she doesn't want to share with me, which is understandable. She has no idea what people say about her son, and I know he doesn't get invited to many birthday parties, etc, because he's a behavior problem. The mom doesn't stay at parties to facilitate, which makes it even harder for other parents to learn about Charlie and keep him from becoming even more unpopular.

So that's that story.

Harrison, the other little boy that is Charlie's best pal, is a good friend of Leo's too. We even went trick-or-treating with him and his family. Anyway, Leo and Harrison got into an argument, so for about a week "they weren't friends". Again, it began as a bus issue. Every day, Harrison and Leo would race to the bus, hoping to be first in line. Many times Harrison would get there first, but if Leo did, Harrison would elbow his way ahead of Leo, pushing him out of the way so Leo would be second. Leo told Harrison every day to stop it, that he didn't like it. But Harrison ignored him and remained 1st in line.

So at the end of the week, Leo told me about it, and that he was really frustrated because Harrison wouldn't listen. I said that friends don't treat each other like that. That friendship is about respecting each other, etc. With Leo always in control, I asked him what he thought he could do to solve the problem. Talking to Harrison wasn't working. What could he do now?

He didn't have any ideas, and so I suggested that he "ignore" Harrison, or tell him that he's not being a friend, and until he knocks it off with the bus line, he's not going to treat him as a friend either. That he doesn't deserve Leo's friendship. Let me clarify, I was totally winging it! I knew I should keep Leo in control always, but that's all I knew to do.

The next day, Leo came home and said he "tried to ignore him, but it was just too hard mom." I can't blame the kid, he's in his class, 2 desks down. The next day after that, he managed to ignore him enough for Harrison to get the idea. And as how things work, Harrison decided to ignore Leo too. This went on for a few days, and then they finally "forgave" eachother, and are now "friends again."

That night, I asked Leo if they watched T.V. AGAIN at school. This drives me crazy. Whenever the weather is bad or something is going on in the gym, out comes the VCR. Of course, the kids love it. I asked Leo what they watched, and he said lately it's been "Reading Rainbow". I had no recollection. Leo said we had watched it at home a few times. Still didn't ring a bell - I normally only record PBS type shows, and when he was into it, Power Rangers. Leo said, "Let me sing the song for you." And he begins to sing in a lovely little boy voice, so sweet and innocent. No embarrassment. I enjoyed every second of it, also relishing how creative he was in trying to jog my memory. "NOW do you remember Mom?" And I did.

Sunday, November 19, 2006 (8 yrs 1 month)
On Bad Days Good Things Happen
So Leo has been cranky boy ALL day. And days are long when there's no activities and no school, right? I've been waiting for 7:30pm since 9am this morning.

Anyway, he told us a story about Sydney. She had fallen down and hurt herself at a friend's house. He said that she hadn't "really" hurt herself since she (demonstrating) took two tiny steps than put herself on the ground. I also liked that he thought it was funny how she devised this, and how he gets so much entertainment out of her.

Later at dinner, Sydney said she liked the song that was on (Sirius Satellite Radio, Coffee House station). He rolled his eyes and said "all the songs on the radio are about girlfriends and love and stuff. Gross". My husband said that's such an 8 year old response, and went on to explain how people often write songs about emotions, and that love his such a popular one.

Monday, January 01, 2007
Is Rudolph Real?
So we've had quite a Zen holiday. Usually, we go to California for holiday break. This means I must SSS (shop, ship, and stress) a couple weeks earlier. We also do Hanuka. House-sitters, mild climate clothing,and other logistics are a must but worth it. Last year Leo asked "Why don't we ever have Christmas in OUR house?" So I jumped on it.

Leo had begun questioning the validity of Santa just after his birthday (he received a globe and because he's a visual learner, he really "got" the concept of earth's rotation and our place in the solar system). Out of the blue, he states, "Hey Mom, I still believe in Santa, but I don't believe in Rudolph." Off I went with an Academy performance, chalking everying up to magic. He looked wearily at me, uncertain, but didn't bring it up again until about a week before the big day. Looking at me across the breakfast table, eating cereal (natch, GFCF organic), he says "Hey Mom, I think I know what I want to ask Santa for." Of course I'm thinking about all the gifts already purchased. I asked what, and he said "I want two things, first a real baseball bat made of wood that real players use. And second, a picture of the real Rudolph." He stares at me intently for my reaction, almostchallenging me. I didn't know what to do! But then I began a story about how the real Rudolph's photograph is top secret, no one has seen him, just like the actual location of Santa's home and workshop. I told Leo he could ask, but Santa may say no. He seemed to buy it, mostly.

Leo had apparently taken notice of my several conversations about pianos, as Santa brought us a Casio keyboard. Right after he woke up Christmas morning, he quickly ran back upstairs to tell me that Santa brought ME a piano, when in fact it was for them! Of course they couldn't care less about it, until two days later they became infatuated with all the sounds and the Bastian piano lesson guide. Now they both fight over the piano! And of course this is just the first week, so we'll see! And to my delight, Leo seems to have that ASD skill, an "ear" for music.

Surprisingly, we didn't miss CA as much as anticipated. Of course I spent about 4 hours on the phone Christmas day, and did have feelings of regret, but they were brief and infrequent. A week at home with just the 4 of us, well, it was unprecedented.

During the holidays, I take advantage of the time home (or at my sister's in CA)to do an annual detox forLeo. Because of his impaired GI and immune system, Leo cannot regulate organic and inorganic substances on his own efficiently, common with ASD, Down Syndrome, and other neurological disorders. Because of this, substances build up and eventually have a behavioraleffect on Leo (spaciness, lack of focus, stims come back, lethargy, lack of curiousity). The test of time (4 years) has demonstrated that anannual detox helps minimize toxic load and build-up from the past year. And sure enough, Leo's dark
circles have returned under his eyes (mild, but I can tell), the rigidity and focus on his preferred activities (football, soccer)has returned.

Leo is definitely an environmental kid (genes too, but), and this time of year we are reminded when these symptoms appear that yes, he has Autism, and yes, we must help him the best we can so he can feel his best. There are many days that go by that aren't Autism days. Just days with Leo, his uniqueness and all.

This time around, I'm attempting a different homeopathic protocol, and in total this should take about 3 months. I'm also doing this protocol right along with him so I can feel what he feels as much as a different person can. I also need this detox as well. We're aiming to go slowly with Leo so he would feel mostly well the entire time, and thus not affect regular life and school. As always with detox, there is a regression, a time where you really don't feel well since toxins are coming out of the tissues and organs and entering the circulatory system and eventually the lymphatic system and finally out. The pay-off in
the end is renewed focus, energy, no dark circles, and increased health (details depending on the person).

So that's that!

School update: Nothing too exciting to report although to my surprise, he's no longer playing with The Best Friend every day at recess. This has been going on since Kindergarten, where they first met. They had different teachers for 1st grade, but preferred to play together at recess and their friendship continued. They are reunited again this year for 2nd grade.

Now, his Best Pal is really into Star Wars, something that Leo doesn't care about much. He also thinks his friend is "annoying about it", and whips out imaginary light sabers whenever possible, including music class and gym whenever the opportunity arises. He is also turned off by the fact that the Best Friend gets into trouble "a lot" in class, distracting Leo when he's trying to read or listen (both need undivided attention since he's not a natural multi-tasker).

To date, Leo prefers to play baseball with other kids in his class, along with one of the gym teachers pitching. Funny, how Leo works. He watched for the first couple of months, and finally had the courage to try it and risk failure in front of the entire 2nd grade class. He's still quite the perfectionist and now I see a competitive streak when it comes to sports. He really WANTS to be good.

Thursday, February 01, 2007
Funny Things Leo Says
While doing homework, Leo says, "Did you know you don't need the bottom of a pencil sharpener? You can still use it. It's only for the scraps. The top part is the most important."

During a discussion about a friend in class that has behavior issues, Leo protectively said to me "Gary's issues are private. It doesn't matter what they are. He's my friend." Good for him!

We've been listening to a new music station in the kitchen. He noticed before anyone else that they were repeating a song, and how many times. The irony, noticing when somebody ELSE repeats!

Self Control is one of Leo's "things he's working on". Specifically, monitoring his thoughts so he doesn't say them out loud at the wrong time. He'll blurt out the answer while everyone else raises their hands. So one day he and his sister were talking about the intercom and the announcements at school. Leo confessed that sometimes they make mistakes, so he'll quietly
correct the name to himself.

I picked Leo up at a play date recently. Sydney immediately ran out into the woods to join the boys while I was having a chat with the mom. It was dusk, and they "got lost". Leo came to Sydney's rescue by holding her hand when she was nervous AND carried her over a stream because she was too afraid to jump over it like the boys did.

Over a weekend with nothing to do, Leo found a flashlight and started looking in dark places like the whole in the kitchen where the tennis balls always goes. He spent about a half hour doing this. A far cry from the old days when he'd stare into a flash light and he'd stim like crazy over them in general. I recall the days when we just couldn't have them in the house!

I like sitting in between my Dad and my sister at the movies (between was the spelling word for writing homework)

Our holiday card had several photos of the kids, one being a picture of Leo's face but he was in the bath. When the card was complimented by a friend, he said the photo on the new years card was so embarrassing because of the bath. It never even occured to me that it would. He's growing up!

"Sydney, she's just being....an ASSHOLE!"

After a play date, Leo said "I didn't have fun with Cameron today, it was so frustrating." It didn't seem like a match to me (different interests). I was glad he felt the same way!

Sunday, March 11, 2007 (8 yrs 5 months)
The Secret Lives of our ASD Mainstreamed Kids
There are 3 kids with an Autism Spectrum Disorder in Leo's 2nd grade mainstreamed public classroom. Leo, Aspie Girl, and PDD Boy. They sound like superheroes, don't they? Three out of 22 kids. This, my friends, is the new normal. This doesn't include the other proud owners of IEPs for other disorders or delays.

Leo's teacher, his peers, and the parents do not know about his Autism label.The para that allegedly assists Aspie Girl doesn't know either. The majority of parents believe paras are there to help the teacher, like an assistant teacher. They must believe our district "gave" our class a para out of kindness or something. Like there's money for THAT. Moms look at it like positive status. An extra that a fellow mom may lose out on. "My class doesn't have a para this year" a fellow mom says gloomily, while
another mom perks up to say how wonderful "her" para is, and how she helps her son all the time. What about OUR kids? The reason they are there?

Leo reports how the para is the one that checks his weekly sentences. How is it that I know her handwriting and not the teachers? Leo reports the para checks the mail, makes copies, doing all that assistant stuff while Aspie Girl loses out on any natural opportunities for learning.

Naturally, Aspie Girl is a bright girl and friendly. She has several friends that I see her play with during recess. Aspie Girl, according to Leo, is a "help needed" kid, a kid that "needs extra help". She makes her daily trip down to the Assisted Learning Room and attendes "lunch bunch" with other help needed kids in 2ndgrade.

I assume Aspie Girl's program is crappy, because not once have I seen the para do anything for her, other than "watch her", like glorified babysitting. No facilitation, no explanations, during recess or at a day long field day I attended.

During this beach field trip, the kids gathered around a naturalist that was holding up sea creatures while giving a talk on them. I see Aspie Girl off to the side, twirling her long piano fingers into the sand, not able to listen to the talk. I could only listen through her. I heard the wind, the cars, the other groups that were nearby. All distractions that kept her from learning.

Her para was listening and watching other kids, occasionally glancing towards Aspie Girl, making sure she didn't "wander off". In my mind, I dream I slap her around, shouting at the para and the teacher. I order themto move Aspie Girl next to the naturalist so she could see and hear the talk. So she could learn. After all, why did she take the 45 minute bus ride? She could've twirled her fingers in the sand at school.

What will the para say at her next IEP? Aspie Girl is a good student. She's doing well. Of course, because she is not a behavior problem. Detached doesn't cause problems for other students or for the teacher? Will the para say she enjoyed the field trip? Would the para have behaved differently if she knew I was a special ed parent?

I know about PDD Boy too. I could just tell, and then a mutual mom friend had mentioned it in conversation. We've never been in the same class until this year. I thought here's my chance to get to know the family and see what happens. Maybe I'll have a friend!

PDD Boy's mom doesn't know I know. He is "doing well" too. He is "doing so well" that he doesn't need a para! Surprise! And what did HE do during the talk with the naturalist? He was next to the naturalist, a good spot. Phew, I thought. He began talking to himself, humming a bit when the naturalist was talking. The teacher quickly removed him and put him towards the back of the group since he was distracting the naturalist. Oh good, so both kids are not learning. Nice.

We've gotten together with PDD Boy, a play date at his house. I hope one day we can talk about their sharedlabel. I don't know the mom very well, but my hope is that one day I can trust her and she can trust me. She's kind of quiet, and when I put out feelers, they were rejected. I use my nephews as the stories, and I also openly share that Leo had a speech delay. No luck.

I feel like a bit of an ass, but I don't know what else to do. I can't disclose Leo's label without knowing what I'm getting into. The mom hasn't been to our local support group. That was my hope. She doesn't advocate for him overtly. I think she does the school services and that's it. Fortunately, our district has an excellent ABA provider now. She could get great services. I wish I could talk to her! I wish I could tell her how the teacher is handling his issues (or not handling them I should say). I'll have PDD Boy over soon - Leo really likes him and his twin. I really want Leo to have several friends on the spectrum. They'll need each other.

I feel for PDD Boy. I envision him in a couple excellent social skills groups I know of, with some terrific children that would really challenge him. But Leo comes first.

Quote of the Day (8 yrs, 5 months)
Leo completed his first ever biography book report. He chose Hank Aaron. It was sports, and of course I loved the fact that discrimination was a part of it! I can't believe he's old enough for something like that!

When picking out things to report about Hank Aaron's early life, he chose the fact that Hank's dad built them a house out of old boards from a torn-down house. I said that was an excellent idea. Hank's house didn't have plumbing or heat either. I told Leo he could add those facts too, further showing how he grew up poor. Leo looked at me impatiently and said, "Mom! I
already said the house was made of old boards. They can INFER that he grew up poor!"

I have never used that word before with him. That word! That word has been written hundreds of times all over IEPs and other therapy materials. And now he's giving me his lesson right back to me. Infer they can, Leo. And of course I got all teary!

Saturday, March 31, 2007
Tae Kwon Do, The Bittersweet End To An Era
Today is Saturday and we are not at the Tae Kwon Do studio. Kind of weird. I'm still hardwired to hunt down his pants and shirt and belt. Today, I just had to make coffee and fix breakfast.

Leo has been taking Tae Kwon Do for 4 years. Like many parents, we used it for PT and OT reasons.I remember those first few times he went. I was so anxious after the many failed attempts at utilizing gymnastics and swimming, I passed the chore to Dad. After all, Dad in theory was in charge of gross motor.

Those first couple of months were tough, like everything new we tried. Leo was SOOHH overstimulated by the yelling (AYE!), the noise level can get very high and unanticipated. Mirrors everywhere, very confusing. Kids are moving around all directions. But we kept at it, actually HE kept at it. We saw that he really wanted to do it (he must have thought it was way easier than anything else we've offered up to this point).

Eventually he settled in and fell in love with this rule-bound individual sport.

Rules?
Individual?
Cool outfit?
Perfect.

Mom and Dad fell in love with the philosophy; To build a more peaceful world. TKD focuses on the positive aspects of an individual's personality: Respect, Courtesy, Goodness, Trustworthiness, Loyalty, Humility, Courage, Patience, Integrity, Perseverance (ha yeah, the irony), Self-control, an Indomitable Spirit and a sense of responsibility to help and respect all forms of life.

We fought so hard to find money to pay for it. We asked our district to pay for it too (one year they did).

Last year Leo began losing interest. His interest in team sports like soccer took over. He began losing enthusiasm for TKD. Sure, when we were there he enjoyed himself, but he began to complain about going. We took a couple Saturdays off, thinking some away time may rejuvinate him. That lasted a while. Getting a new belt.

The time had come to pay again for the year. Leo didn't want to renew, and talked about how he'd miss his instructor and his friends. I too felt conflicted about ending TKD. After all, will Leo's rate off development change (his coordination, his sensory integration). We sat down and talked about the pros and cons, and decided not to go back. We also realized if we regretted this later we could always join again. Leo was relieved to know he wouldn't have to start over with belts. He'd still be high red.

TKD made me feel safe. Letting go of the last piece of what I consider therapy is very difficult. I have to let go and let go of Leo a bit. Let him make some of his own decisions. Let him choose to try baseball this year even though I've already had bad dreams about that one (Leo getting hurt orfeelinginadequate, becoming resensitized in his face).

I've sat down to write the TKD instructor a caring note, but I'm just not in a place to do it just yet.

So spring soccer and spring (gulp) baseball it is.

Tuesday, April 03, 2007 (8 yrs 5 months)
Today and Friday

Today my close friend told me her son has autism.
Today I made a play date with a classmate of Leo's, PDD-Boy, for Wednesday.
Today was Passover and Leo thought it was cool hearing about the parting of the Red Sea.
Today the kids played the piano for Grandma.
Today I repainted blackboards (the kind used with erasers) for preschool.
Today I marveled at the fact that I'm a preschool teacher. There's that planning thing again!

Friday was Parent Teacher Conferences. I was shocked to learn that Leo and his class took a standardized test for Reading called the Gates. I almost died when she pulled the booklet out of his folder. I first got angry, always my first response. I thought they started standardized testing in 3rd grade for gods sake!I started to sweat, and surmised the outcome quickly in my head. Leo didn't finish it on time, he got confused by the bubbles and such. No problem, we'll open up an IEP, he'll qualify for untimed testing, we'll practice test taking skills, and take a deap breath until 3rd grade metacognition.

None of what I predicted came true. But, Leo's teacher was a little concerned about his score - average, since his skill level, according to her, was far better. Nothing to worry about, yeah right. I wonder what this will mean for the future. Maybe spacial planning, organization, timing, or other executive functioning skills will become disabling? I'm ready if that's the case. I say bring it! She said it's his first test, and not to be concerned. She just noted that she was surprised. Okay then.

She also stated that some fine motor things are challenging for Leo. Example: they all made totem poles made of paper towel rolls and cut-out shapes that require a long thin slit to be cut. The cutting was a challenge and it took him a while to figure out the hole-poke-then-cut trick. Everything else, fine. Then she said: He is ready for 3rd grade. Say what?

Great handwriting, reading, and he has a large group of friends, one best friend, and most importantly he's very happy. He can even do geometry - copy a 3 dimensional shape onto paper. Every week he surprises me since I can link so much of the things he can do back to therapy goals. And this was a kid that couldn't copy a 2 block imitation. We worked so hard on that hand-over-hand for years (yogurt cups, crayons, matchboxes, anything he wanted).

Tuesday, May 08, 2007 (8 yrs 7 months)
The Autism Most People Can't See

I can finally sit down and do an update. I have so much reading to catch up on too!

Instead of blogging, I've been using my nights to catch up from the days and finish some last minute knitting projects for birthdays and new babies. I enjoy the work, it relaxes me and in theory keeps my hands from late night snacking! Spring has been beyond busy, more than Christmas/Hanuka. Since multi-tasking isn't a natural state for me, I try to live a simple life. Unavoidable this time of year, so knowing this I try to be positive and don't forget to enjoy every day. We were on vacation for spring break, and again I found myself reflecting on the previous year, taking it all in. Not just for Leo, but for Sydney and for Husband.

We arrived in the afternoon at a beach resort. So far so good - I barely give notice to what travel used tobe like. Guaranteed regression, health symptoms at the highest level, due to Leo simply being out of his element plus lack of sleep and food changes. The stress of shipping food, talking to restaurants in advance, finding Leo a place to sleep and have down time in the afternoon was critical to his wellness just a few years ago. But this afternoon, Leo is the same as he always is.

The next day is Husband's birthday. Traditionally, his birthdays have always sucked. The actual day that is. We celebrated before we left - Spiderman theme, and cute presents that the kids picked out. Husband is in a good place - doing stuff "for him", he really likes his job (how many people can say that?). But this day Leo crashed. Vacation caught up to him and for whatever reason, a virus, sleep-deprivation, or climate change, or everything together, Leo became Autism Poster Boy (APB).

Unless you also have a child with Autism, you'll just observe a child that seems tired and a bit out-of-it. Autism is something most people can't see. Leo isn't just "any kid" fatigued from the trip. His biology becomes apparent only to a trained eye. Leo becomes very lethargic and spacey. As we are walking around the resort, he loses spacial awareness - he walks in front of me and slows down, not noticing he's in front of me. He starts walking "funny" by straightening out his knees first before touching the ground as if he's doing self joint compression. I impatiently yell out REGULAR WALKING LEO without even thinking, making Husband self-conscious. He does this with his arms too, as well as swings them around side to side without awareness that people are around and almost hits them. He walks looking down. Realizing what's going on, I look at his face to see dark circles.

Husband and I conference as we walk, and it dawns on us that Leo is APB. I quickly get angry and frustrated, showing little empathy. I tell myself I must pull it together, and vacation will be "what it is", and I should be grateful. I wonder if we should cancel our kayak trip, thinking Leo may not be up for it. Husband takes on his old role of Protector, and tells me that I need to stop correcting him so much, that obviously he's not feeling well. Husband reminds me that Leo is allowed to have a bad day - something that's "my issue".

We walk to an outdoor restaurant and order food. I now begin clock watching, something I've had to do less often now that Leo's blood sugar is much less sensitive. I wonder where I could buy a bag of chips in case the food takes too long. I don't want Leo to become so out-of-it, that the whole day becomes a day of Leo not feeling well. I get mad at myself for not carrying a snack in my bag like I used to. What was I thinking?

Leo and Sydney see a basketball court next to the restaurant and decide to go on over to play while we wait for the food. There are a couple of older boys playing. Leo typically would have asked to play. Instead, Leo begins to play imaginary football within his internal world. In his mind, he picks teams and what player he is, and uses real statistics to reenact a play. He does this stimming to pacify himself. He doesn't even notice spatially where the basketball players are, and runs right into their play. I yell over, and redirect him like I used to to the other end of the court.

To the casual observer, he looks like a kid running around the court.

Dinner finally comes, and Leo's lost all his manners. He chews giant mouth fulls of chicken Caesar saladand fries, smacking away with the plate and napkin not in front of him. Husband and I squabble a bit, both in bad moods because we are tired and because Leo isn't himself. I tell Leo that I'm sorry I'm so grumpy, and that it's hard to see him not feel well. I tell husband I'm sorry his birthday was filled with grumpiness and a kid not feeling well.

After a full night sleep and a belly full of omelette and hash browns (enzymes too, natch), Leo seems to be himself again. APB is gone. I apologize to him for being so impatient, and remind him that he used to ALWAYS feel that way, and so when it happens it's scary and hard for mom to switch gears. I tell him again how proud I am that because of all his "extra help", hard work, and perseverance (the good kind ha ha), he doesn't have very many of those days.

I smile as we walk through a parking lot because Leo notices the foreign license plates. We hold hands and talk about his license plate book at home and how we have to remember to write these new ones down. He loves them! I smile because he's memorized so many sports stats and now knows more than Husband. I smile as Leo rattles off dozens of countries as he and Sydney walk around on a tiled world map that's on the floor of a restaurant. The cashier looks up, impressed by his knowledge.

I smile at the fact that Leo eagerly agrees to try out kayaking, something he's never done. True, I am also thinking about vestibular/proprioseptive instability in the kayak, topped by Leo's former fear of death and drowning (this took 2 years of Aquatic OT). To my relief, he loves it. Husband enjoys seeing me and Leo talking and working together as a team in the double kayak. Our day was one of those great family days that'll we'll certainly remember.

Other things I found interesting on our trip:

We met a family where BOTH parents are pediatricians. The son, Leo's age, had sensory issues that I immediately saw (sand, sea weed,etc). Here was Leo, bounding in the ocean Laborador style, while the other boy watched. Here was I, talking about SI with the mom, a pediatrician. And I was telling her thingsthat she knew nothing about! She was very curious, since I shared just that Leo had/has SI too. I chose not to say anything about Leo's dx since the family lived near us, and most likely we'd see again socially - the irony! Here I thought I had an opportunity to share our unique outcome, as well as the fact that
Autism isn't a hopeless stereotype to pediatricians that usually are in the dark.

I smile as I watch Leo initiate a football catch with a few other boys his age while in the ocean. He is so happy running around and chatting away about sports, Webkins, and other second grade things.

Later on, I look over and notice that all parents were reading at the same time. Husband was reading Outside Mag and a trade journal. I was reading The China Study, my latest environmental book which I'llbe blogging about later.

And what were the peds reading? Madamoiselle and Esquire. I know it's vacation, but I found it very interesting. Us parents are always at the helm of information rather than the medical community.

Monday, June 11, 2007 (8 yrs 8 months)
Baseball

Back in March, Leo decided he wanted to play baseball. In my town, it's quite unusual to have a boy that's never played at his age. Of course they try T Ball and if they don't like it they move on. When Leo was T Ball age we were light years away from doing it.Since he no longer wanted to do Tae Kwon Do, I really wanted him to do some type of sport. I bravely said
"Yes", knowing we'd be yet again in uncharted territory, facing the ultimate challenge, a ball, a SMALL HARD ball coming very fast towards Leo's face. I was very proud of him for wanting to try, knowing that most kids would have some experience. I was mostly proud that he wanted to try something new.

For about a year or so Leo has been playing catch regularly - football, and baseball, with Dad. He's also been playing some ball sports at school. Amazing to me that with his sensitivities he sought these things out. His obsession with sports and statistics helps I'm sure. He practiced on his own, replaying real plays in his head, almost every day after school as a decompression/transition activity.

The first few games were torture. Pure torture for old Mom here. Although this league is very laid-back and very supportive, I truly felt for him. Here was Leo, this giant kid (single A since he's never played and the oldest kid)that couldn't hit the damn ball. Not a surprise, the timing and the pitching machine really threw him. They gave him extra chances in still no luck. He was the ONLY kid on his team (and the other) that just couldn't hit the ball. He sat at the end of the bench, by himself, completely bummed but not giving up. I think what saved him was that he could throw and catch well enough in his position on first base.I sat there, deer in the headlights, wondering what I should say. Should I let him quit? At what point? On the drive home he said "I'm upset but I'll survive Mom". I reminded him about how it took him a long time to overcome his fear of swimming,
but that he did overcome it and now LOVES to swim. The next game the coach brought a T-Ball thingy just for him to practice with. Leo was a little put-off by it since no one else had to use it, but I reminded him that it doesn't matter, and no one cares. The point is learning how to do it.

The next game he finally Leo "touched" the ball with the bat. Everything changed. I was crying behind my sunglasses. Big smile from Leo. He did it! He couldn't hit it the rest of the game but it didn't matter.

After that game we stopped at the grocery store across the street for a treat to celebrate - Tofutti, natch. Sydney, Leo, and I were getting in line when I saw a very familiar face in the aisle nearby. It was Amy! Leo's former ABA Clinical Supervisor - the person that designed and implemented Leo's ABA programs. It was like seeing family. She WAS like family for years. And I do miss our long conversations and our former closeness. I was overjoyed to see her and I immediately told her that we just came from baseball practice. I squinted and shook my head and she immediately got my message - those issues no longer keep him from playing a ball sport.

Leo looked at Amy and said in an inquisitive voice, "Who are you?" noticing that I am super-friendly with this person and Sydney knows her. We exchange looks and smiles, and quickly says "I'm Amy". He says he doesn't know her. Amy says "Don't worry about it." We then tell him she's a friend of his former shadow. He remembered HER alright. Tailed him for years.

I can't describe that feeling - having a "normal" day I suppose? Baseball. Grocery shopping. Leo not remembering his past as much.

The next game Leo catches a ball as 1st baseman, a close one. As the ball was landing in his glove, he shut his eyes tight. The reaction I'm more accustomed to seeing. I smile with seeing that familiar face. Leo opens his eyes and smiles at the site of the ball and confirmation from the coach's face.

The coach says, "You can open your eyes now Leo."

Leo wanted to march in the Memorial Day Parade. He had so much fun! Just a few short years ago that would've been suicide, just attending a parade. It was so cute seeing Leo and his team in their uniforms walking.

Just one more game. He's going to miss it.

Thursday, August 16, 2007 (8 years, 10 months)
Anniversary From Services

We've had a fairly uneventful end of the school year - Leo was sad but not upset like he was last year. His teacher said he's ready for 3rd grade! As always, it takes me by surprise. We continue to monitor...

June 22 was the anniversary of ending therapies three years ago. Pretty incredible to me. As always, I reflect upon the last year.

I sit back in my lawn chair at the neighborhood pool watching my son jump with abandon into the deep end. He surfaces with a spongy ball and a big smile, and with determination throws it forcibly to one of three other boys that are playing catch. One is his closest friend since Kindergarten. The others are friends from his regular local elementary school. Kid sister is nearby in the shallow end playing mermaids with her friends. Dad will be joining us here after work with Mexican take-out for
dinner.

I am dry, in regular clothes, by the pool, with an unread magazine in my lap. I could glance at it if I want to, my kids are strong swimmers now, but I enjoy watching. I find it peaceful to observe life as it occurs right now in this moment. I am mindful of this daily gift I have received. I am the mother of a happy child that has choices. Seven years ago my son was diagnosed with PDD-NOS. And let me tell you, ‘happy’ wasn’t a word we used to describe Leo.

Earlier, Leo was picked up at nature camp by a mom whom he briefly met before we started carpooling. Leo wasn’t concerned with what exact time she’d arrive or even the kind of car she drove. He’s been to this camp before, but he attended without knowing any of the children. By the second day, he already belonged to a little group of three boys. He enthusiastically tells me about these new friends during dinner. He’s also become friendly with the carpool boy, playing basketball games, X-Box, or Webkinz almost every day after camp. I listen in to their conversation on the drive home “Hey, did you see the baby rats? Did you see those animal tracks? I saw you canoeing today.” They talk on and on about school, speculating about what teacher they’ll get in the Fall.

I think about that intense year of aquatic OT when he was little. The one hour of driving each way, the expense, all while taking care of Leo’s little sister. Our goal: The ultimate, a swim-safe child. This seemed impossible since the initial goals were to address sensory defensiveness, vestibular and proprioceptive challenges, fear of dying, hyposensitivity in legs, hypotonia in his arms and upper back. I was raised in Southern California on the beach, so I always had envisioned sharing my love of the ocean with my children. I think about Leo’s anxiety the night before each swim “lesson”, how he’d worry himself sick, rarely sleeping.

Today Leo has choices. He chooses to swim with his friends. We can go to the beach. At nature camp, he learned to wade and canoe, not concerned that he can’t see what’s under the water.
Pretty surreal.

I think about how any change in routine would cause anxiety. Being 1 minute late would bring him to tears. I think about Leo’s intense separation anxiety that made it impossible to place him in the careof others. Being around other children would cause anxiety.

We went to visit my family/friends in California for 3 nice long weeks. It just gets easier and more fun as the kids get older. Traveling alone with my kids, I'm on alert per usual. I hold a common fear that many parents have, that our children will somehow get taken advantage of because of their innocence, their naivety. While waiting for a flight at the airport for that family trip, Leo’s social abilities were put to the test. A questionable character in the waiting area began talking to Leo,
asking him personal questions. He protected himself. When asked what town he lived in, he said “I forgot”. He avoided eye contact with the man while boarding the plane by gazing at a nearby billboard, pretending to read about the arriving flights. He told me later that right away the guy seemed “creepy”. And he was right.

Am I an Autism parent? Yes. Has my life changed in 3 years? Yes and No. I don't have an impossibly giant schedule to manage and implement. I have similar fears and concerns, but they exist at a lower volume in my mind. I occasionally experience PTSS symptoms, such as when it’s time for a parent/teacher conference, or when we have a very ‘off” spectrumy day. We are still in
debt although we are much better off financially than we once were.

Rollercoaster days are few and far between. Those ‘off’ days are hard, as I’m not used to them like I once was. I’m grateful that I’m not living in crisis mode anymore, so these days no longer do me in.

I’m still angry though. Angry that I have more company, meaning more and more people I KNOW and more people I meet have Autism. I’m angry that the issues at hand years ago are still the sametoday.

Autism is part of who Leo is, and I love him and accept all of him as a whole. I can't separate the autism from non-autism parts. Sometimes it’s fun to attach certain aspects of his personality to autism. But mostly, I just don’t care. I use our experience and Leo’s unique wiring as a learning tool.I regularly remind both my children about what Leo’s deficits USED to be and now LOOK. He can do anything. There are no barriers to his potential, and our reward is his success.

Wednesday, August 29, 2007
Summer Misc, 8 yrs 10 mos.
I refuse to say school has started, because it sure still feels like summer here. No homework, the kids are still running around late at night, no activities until after labor day and beyond. Flip-flops and shorts are still being worn. But indeed, school has started. My 1st and 3rd grader have the same schedule - they go to the same school and get home at the same time, around 3:50pm. Hurray!

I can't confirm the disorder/disability count for 3rd grade as of yet, but I have confirmation that Leo's former arch-nemesis from 1st grade turned friend in 2nd grade is in Leo's class. He also happens to have ADD. There's one other boy that's quite a legend/handful that has a behavior plan as well. He's my favorite, and now is friends with Leo. I predict this relationship will move forward - they've never had class together. His mother is pretty much a normal person, inclusive, and honest.

So far, 3 kids in a class of 21. Leo didn't get his BFF in class, which was a giant bummer because we won't be able to socialize with him much this year. His sister, Sydney's BFF, is the one with Leukemia, so his social schedule and activities are limited to church. PDD Boy is still a close friend, but not in the same class. They'll see each other at baseball which is great.

Leo's teacher seems TGTBT (too good to be true). She energetic, maternal, smart, firm, and engaging. I even told her that she's TGTBT. After last year's mediocre one (at least in the personality/cheer leading dept), I'm pretty damned excited.

Very cute, Leo is even more excited about Sydney's teacher. His former from 1st grade. She's terrific, and I have little worries there. He thinks he's super cool because he 'knows just about everything' in regards to her class. On the first day, he made sure his sister got to her class, as her sense of direction and memory isn't her strong suit (she's just like me).

Leo's hypoglycemia has made a significant improvement over this summer's detox. Huge, I no longer have to pack an extra snack for him to eat in the afternoon - he can basically make it combined with lunch schedule getting later as he's getting older. I am slowly feeling like I am less like a mom with a diabetic child.

The other good news is that Leo seems basically fine on dairy. I've been really worried about the soy consumption in this house, especially since it's in all the processed GF foods, so I boldly decided to give Leo dairy regularly (translation=3x week), and the rest of the choices go to soy. So almost 50/50, splitting the difference of evilness. We still stick to GF, as it does seem to build up, but do 'cheat' for special occasions like a birthday...

Leo had a sleepover at the same boy's house from last year. It was awesome just like last year! We talked a lot about two boys that he doesn't like much that would be at the sleepover. We told him life isn't perfect, and even though these boys aren't that nice sometimes and aren't your favorites, you just have to go with the flow. I also said people change, especially kids, and that you have to give them a chance, they may surprise you. I reminded him about our neighbor, how they get along now. The greatest was I only had to pack enzymes! The mom gave them for pizza, and he declined cake. Simple! He had a total blast - this year they all played baseball and relays before a movie, popcorn, and other boy stuff. I was so happy for him.

To change the subject (Hey I can do anything, it's my blog!), I seem to always have an issue at school at the beginning of the year, and this year was no different. I found out through a friend that the PTA wants us to fill out detailed health related questions on a waiver for PTA events/activities. I asked the nurse and the principal about the legality with privacy. Of course, this touched a nerve with me because of vaccinations, allergies, and hidden diagnosis. Like I'd say jack about any of it! Can we all say Secret List? I get the waiver thing. Insurance is insurance, but do you think I'll trust these other moms with that info, when there's already an undercurrent of animosity towards "allergy kids" and the politics that go with it?

So there ya go. Haven't heard anything BUT the form was sent home sans waiver. I'll keep you posted.

7 to 8 Years

2007-04-01T08:01:00.000-07:00

November 2005 (7 yrs 1 month)
Everything continues to be going well in school. Leo’s energy is back after getting used to his big long week days, and
now we have occasional after school activities – a play date with kindergarten friends, Tae Kwon Do, or just riding bikes
with his sister before dinner.

We had our first “incident” with a boy that was picking on him (bound to happen to any gentle kid I suppose). He handled
it beautifully – told me what happened (the kid tried to trip him in class a few days in a row). He didn’t want me to make a
“big deal “ about it, and didn’t want the other kid to get in trouble. I think he regretted telling me. We let Leo handle it,
and he did. He was very firm with the kid and it hasn’t been an issue. All very appropriate – not wanting to be
embarrassed by his mom, etc. More music to my ears. I also liked his judgement on how to handle the situation, and
how he still had empathy for this bully of a kid that bothered him. I look forward to the next parent/teacher conference.
His teacher says he’s doing great, a smart kid, and a very easy going kid.

Also there's a little boy in Leo's class named Patrick. Patrick also has Down Syndrome, just like a cousin of Leo’s. Leo
talks about him a lot since he's a boy he already knew, from a visit to our vet ironically, and today Leo and Patrick were
line leaders to and from the cafeteria. Adorable! And the best part is that Leo doesn't differentiate between Patrick and
any other kid. He did mention in another conversation that there is another grownup in class that helps Patrick
sometimes.

Leo’s teacher initiated a conversation about Patrick and Leo. She mentioned how exceptional Leo is with him – patient,
tolerant, and how Patrick relies on Leo. She said Patrick let Leo hold his hand down the hall going to lunch – a first, not
holding an adult’s hand which was their goal the previous year. Patrick’s aide pretty much said the same thing about
Leo, how kind he is to Patrick. Now, if only the rest of the world were like Leo.

And How About Mom?
Stress for me is leading a double life, and not being honest with many people I am close to. And I do still have post-
traumatic stress issues. Autism will always affect me as what I know about the world has been dramatically altered. And
as you can see, I haven't turned my back on autism. I could, and most people do. I find the best parents, most honest
people in autism. It's great to be "all" of me with them, and autism makes people honest, which is like a breath of fresh
air to me.

Last nite, my husband and I went out to a local pizza/pasta restaurant. We hadn't been there in about 6 years, before
Leo was dx. It really impacted me to sit there, in my own town I know so well, and see people eating wheat and dairy,
food that is so exotic to me. I began to think about how we probably would have ordered a pie each week from this place,
and our kids would have known the staff there if autism wasn't a part of
our world. They of course know the HFS in this way, ha ha. We rarely go out, and we've never been away from the kids
by ourselves (we have no family to help out), so this was a rare event.

Top of mind is that most kids in our autism support group have ongoing services. There are two that
have reached recovery status, 2 in the hopper, the rest are all in intensive programs, in school, etc. There are a few that
are pretty severe as well.

I understand what some parents mean about "making peace". I can NEVER make peace. I think there is a distinction
between acceptance and doing everything you can possibly do, leaving no stone unturned, to maximize the potential of
our kids.

I take each child with Autism personally, my love for these children and the INJUSTICE of the state of these things keep
me typing away, going to groups to talk to new parents. Some days I feel like putting the site down and walking away. It
varies day by day, just like a child with Autism.

January 27th 2006 (7 yrs 3 mos)

Just last week, Leo told me a story about a boy that has been bugging him on the bus (and he's in his class). For months, Leo has handled the situation beautifully – ignoring the attention-seeking behavior, and sometimes shooting back an occasional 1st grade-speak such as “so”, “who cares”, and “whatever”. This kid has his own share of problems – that’s life. Anyway, he said, "Hey Mom, I think Charlie likes Meagan". I said, "really, and why do you think that?" Leo said, "I was drawing in art center today, and my paper was too big for my space. Charlie noticed, and moved some books out of the way. Later, he smiled at me for no reason". He’s also drawn the parallel between his sister’s attention seeking behavior (like standing in front of the TV) and his classmates. He’s wise beyond his years in so many ways.

The other day at Leo’s weekly Tae Kwon Do class (red belt now), his instructor challenged the class to think “out of the box” to achieve a goal. While jumping as high as they could, she told the students to touch the ceiling. They all looked pretty puzzled. She said, “No really, touch the ceiling.” Off the kids went, trying to find a way to touch the ceiling. Some kids just stood there, really confused. Leo was first to figure it out – he found a stool and placed it next to the wall and stood on top to touch it.

Leo gets in the car and says he met some new kids today at recess. I said, “really – you didn’t play with Anthony or Clark today like usual?” He said Anthony was inside for recess today for some reason, and that he “didn’t feel like” playing with Clark. He saw some kids playing football, his latest interest. He said he started talking to them in line after lunch, because he and one of the boys had jerseys on. He joined in and had a good time. He even challenged the boys on which team should go first (pretending they were in Pittsburgh, so the Steelers should go first). They all agreed with Leo. He thought they argued about what to do more than actually play. He thought that was interesting.

We watched E.T., the movie, during a snow storm. I wasn’t sure if they were too young, I didn’t know if they’d really get it. Leo was riveted. I explained a lot, background stuff about aliens and the scientists, what they were doing in the first place. Leo was upset that Elliot’s mom didn’t believe him. He was upset at the scientists attempting to “get” E.T. He got how E.T. wanted to go home, he and Elliot’s friendship. Not at an adult level, but Leo got the conflict between E.T.’s friendship with the kids and his desire to be home with family. Talk about empathy!

Captain’s Log, Stardate, June 22th, 2006 ( 7 yrs 8 mos). Today is Thursday, the last day of Leo’s time in 1st grade. It also marks the 2nd anniversary of ending services. I no longer have my 1st grader, but a kid ready for a fun summer. Our uncharted course through typical childhood continues uninterrupted. It was a terrific year! Now, tell that to my anxious brain at 2am... Each day that has gone by has been a gift. A gift that keeps on giving as I look at him in the middle of the night and think about what a charmed happy life he has. What a big boy he’s become.

Leo was VERY sad that school had to end. He LOVES his teacher, and loves his routine at school (yeah, you’re surprised to read that... a kid on the spectrum that likes structure? No! ha ha)

In the bath the night before, he was beside himself with grief. He said that day was just the” WORST DAY OF SCHOOL EVER!” I said all the right things all parents say, that never seem to work. Why do we say them? I have no idea. It made me feel better saying them. Leo said he wanted to have 1st grade all over again with the same teacher again, “like the life cycle of a butterfly, Mom. I want to be little again and have my same teacher over again for Kindergarten and 1st grade”. Pretty cute. I thought about how Leo really IS in a life cycle, just much longer than a larva to butterfly! And that I’m in it too.

Leo held it together all day. He really understood that it was really over, versus for other kids it doesn’t sink in until they’ve been home for a few days. He said everyone was sad but no one, including him, cried. I couldn’t believe he DIDN”T after the display the night before. Leo said he started to get the “funny feeling” in his nose on the bus while driving away from the school, but managed to keep it together. After he got off the bus, he ran over to me and started crying. It was adorable and I felt for him.

But before all of that, let’s catch up:Winter was fairly uneventful – Leo did really well on his first ever long-term study. The unit lasted 2 months, and it incorporated reading, researching, writing, math, and science. The kids really liked the topic and motivated them to practice their new skills without really knowing it.

The earlier growing pains for both of us, Leo and me, worked themselves out. The two kids Leo had issues with (the bus kid and the kid in class) was handled and today he is friends with both boys. I realized kids try to figure out where they stand in their new social situation at school, just like us adults at a new job. They all jockey for position, they all want to be liked, many look for weakness as a way to be strong themselves, they all have so much to figure out, they all have issues to work on.

For the first time, I realized how I wasn’t part of Leo’s daily school life. I had very little impact directly. Everything had to come from Leo. For the first time, I couldn’t orchestrate Leo’s choice in friends or how he’d spend his free time. All I had were the years before us, all of those talks, all of the lessons – parent to child, to draw upon for reference. Fortunately, Leo’s trust and open way maintained throughout the year. I had many ‘Academy Award Winning’ performances after learning about Leo’s trouble with those 2 boys - stuff I hadn’t had to deal with yet as a parent since he’s my first.

We made a deal, Leo and me. If there was a problem, I promised that it would be up to HIM on how to handle the problem initially. I’d present all of the possible solutions and he’d have the final say about what to do first. If THAT didn’t work, then we’d try it my way. Fortunately, in both of Leo’s situations, his solutions worked.

The first problem: A boy in class was trying to trip him in class when the teacher was conferencing one-to-one with another student (sneaky). Leo decided to confront him directly the next time the boy tried it. Leo asserted himself and told him to basically cut it out, and that was the end of it. He was very proud of himself – he handled his problem himself. Very empowering!

The second situation: Our neighbor kid has some problems that haven’t been dealt with. Basically he’s a wild kid with untreated behavioral problems. The parents are pretty clueless about it so far, so there isn’t much I can do AND he’s a neighbor. My hands are tied for now.

Leo was really turned off by his behavior and as a result he didn’t want to play with him outside of school. Leo isn’t a “boy’s boy” like this kid, and his interests and play style was too way over the top for Leo. Frustrated, this kid didn’t like the rejection and started saying “mean” things to Leo on the bus as a result (I don’t like you, you have a small brain, I wish you didn’t ride this bus, etc). It was SOOHHH hard for me to hear all of this, and I had to hear it NOT from Leo but from another kid’s mom on the bus. Leo confirmed it, really more interested in how I knew than than the incident itself. (talk about theory of mind....)We talked about the many possible ways to handle it. We both were so grown up about it!

Wide-eyed, Leo was very interested in all of the possible ways to handle this kid on the bus. I could talk to the parent. I could talk to the bus driver. I could tell the principal. I could talk to the boy. Leo could ignore the behavior, taking away any power the kid has, showing the kid that the words don’t work.

Leo chose to ignore the behavior. Even though it killed me to know that the boy was STILL talking trash on the bus, I wanted Leo to believe I had his back and that I believed in him. This eventually worked. It was a looonnnnggg couple of weeks. Every few days Leo would fill me in on if the neighbor kid was still “saying stuff”. This eventually worked, the kid lost interest. Phew! Leo even compared the bus behavior by this kid to his sister. Sydney will stand in front of the T.V. to get his attention (ahhh....those negative attention seeking behaviors....Leo’s quite the behaviorist).

Here are a few spring highlights:
After listening to some music (something from my Alternative collection, maybe Coldplay?), Sydney asked what some of the lyrics meant. It was above both their heads, but Leo answered anyway “he’s singing to his girlfriend Syd”. He was able to figure that out based on the mood, tone, everything that happens in a song except the actual words.

On vacation at a beach resort, Leo listened to music coming from the day spa. He said the music made him feel relaxed and happy. He said that’probably why they have that kind of music while people get massages.

Leo made a friend on that same resort vacation. He began playing basketball with a boy his age (not younger, thus less intimidating, like in the old days). They played together in the pool, swimming around and playing catch. By the end of the few days together, they had their own inside jokes.

To my utter amazement, Leo began to take a huge interest in team sports. I think I’ve mentioned football before. Baseball and hockey is also on the list. He no longer winces at the ball coming at him, and he actually has a good spiral when throwing the football. From a kid that spent years practicing with a ball on the pulley. He also loves watching the game and enjoys collecting football cards. He eagerly awaits for his Sports llustrated Kids Magazine to come in the mail.

Is he obsessed with football? YES. Is it in the perseveration way? On occasion. About once a month I’ll have to tell him to stop talking about or playing football for a day, that it’s interfering with other activities. Mostly he’s like any other kid that’s obsessed with sports, but for me it’s uncomfortable because I’m always thinking of it in the worst light, with my skeptical “ready to bust him” glasses on. I don’t like it when either one of my kids has a strong interest! Poor kids! It just makes me nervous – my baggage after all this I suppose. But hey, from a kid that stimmed all day on inappropriate activities to a kid that plays well with football, I can’t complain!

For the first time, Leo thinks of the future and wants to be a pro football player when he grows up. His imagination conjures up a very detailed successful life as a superstar.

Leo made up a game to play at recess. It’s a video game, where all of the kids are in one on the field. They run around and shoot bad guys for points. They got all the way up to level 17. He orchestrated the whole thing and the other kids look to him for direction.

Leo has been playing for weeks with a kid and doesn’t know his name. This, from a kid where names used to be ALL that mattered.

As Leo and Sydney have gotten older, the more they seem to be in “kahutz” with each other, plotting against me, sometimes for “bad’ things like not brushing their teeth, ways to stay up later at night. Other times it’s for Mother’s Day. Very cute!

Leo wasn’t the worst player for spring soccer. He was right in the middle. I was so happy to see that, especially since he likes it so much. And he loves watching and rooting for teams during this World Cup. He doesn’t hesitate to get into the middle of things, and rarely flinches his eyes. I never thought he’d ever play on a team.

I watched Leo in awe at a swimming pool birthday party. After years of aquatic OT to get past his fear and sensory issues with water, he was right in the middle of a splash fight with his fellow 1st graders. After that, he successfully had fun doing a sack race AND did wheelbarrows with other kids. He actually let another kid hold on to his ankles. From a kid that couldn’t get past 3 “steps” with his hands for 6 months. At the end, they hada water balloon toss – here Leo was catching and throwing wonderfully like a 1st grader and laughing when the balloon popped and got him all wet. (the unpredictability of that stimuli, the “in your face” activity). The catching and throwing. Pretty incredible day.

I reminded him later about all his hard work, the swim classes he dreaded and stayed up all night the night before, all the extra “practice” as we called it, with OT, and PT. That because of all his hard work, he now can have fun. He has choices! That if he hadn’t done all this work, he would’ve told me he didn’t want to go to this party and he never would’ve had such a fun day like this.

He now has play dates with the kid that tried to trip him in class at the beginning of the year. Of course, I’m still secretly mad at the kid, but I’m the mom so it’s okay.... ha ha

What are Leo’s residual issues? Leo is different, and will always be so, until there is a cure. Do I really want Leo cured? Well, I don't really know. He's a happy boy with many choices. If that changes in Leo's future, if his disability impairs him in the FUTURE, I'd opt for a cure. It's all that I ever really wanted, for Leo to be happy. His happiness was my fuel to getting him the help he needed.

For now, we are happy he no longer needs therapy. Like most of our kids, Leo's GI and immune systems are different and don't function properly on their own, so on the Biomedical side of therapy, we continue to be GFCF and we give him enzymes and allergy treatments like Bioset. Would I enjoy not being Betty Crocker GFCF Organic Momma? Yes suree bob. I'd love sending him off to school where he could eat cafeteria food and eat at other people's homes and restaurants.

What about behaviors? School? Social situations?
Self monitoring, specifically, exercising self control is still challenging for Leo. This goes under the category of Executive Functioning. A perfect example of how Leo is wired differently on the inside, in his brain. Internal organization that comes naturally to us had to be learned by Leo.

This issue doesn’t stand out over the other 3 boys that also have this same issue, or really any 1st grade typical behavior. But I know the reason for why it’s challenging for him. It’s not immaturity or acting out. Specifically, he’ll talk out of turn, not being able to help himself and answer the question when he’s not called on. He’ll finish the teacher’s sentences. We all do this in our heads, we know where something is going, we know what the answers are sometimes, but for Leo, he sometimes can’t keep it in his head. He’ll “call out” once or twice a day out of turn. Again, not that he’s the only one doing it, but it’s not immaturity or not listening on purpose. Leo’s got to actively keep aware of his thoughts and what he’s doing. The good news is that he doesn’t stand out and he’s getting so much better at monitoring himself.

How does this play out on his performance at school? Just dandy. On his report card, he got an “S” for Some Progress Noted, further development expected for “Exercises Self Control” . “P” for Progressing Well is the best mark. And as always, there’s an “H”, for Needs More Helpand Time. Leo only got three “S’s” out of 50 marks. And no H marks! What? I know, pretty incredible.

The other S marks were under Evaluates Own Work Accurately and under Follows Directions. Both fall under Executive Functioning. And again, they aren’t H marks, only S! He’s gotten better over this year, and I know he’ll improve even more over time as he matures.

How about those “P’s”?? All “P”s for the rest of 50 categories. He listens attentively, he shows persistence and stays on task to completion, seeks help, organizes works and materials (you’ve got to be kidding me here, I still can’t get over this one). Demonstrates respect, responsibility, acceptssuggestions, amazing! Natch, reading, and math are okie dokie. Even writing is strong! He can write stories with a beginning, middle, and end. He’s actually one of the strongest story writers in class! He self corrects when reading. His handwriting is strong. Boy, for a kid that could barely hold a pencil let alone make a mark on paper, it’s pretty crazy.

Do I have the Voo-Doo Magic??
NO, silly. Because my son has reached recovery status, other parents often think I have tried harder or have some magic formula. Not true! I could give you a long list of parents that are way better parents than me that DON'T have our outcome. Luck, talented staff, and the ability for me to be at home to focus soley on Leo's intervention got us very far.

Out of the box, Leo had some good skills - he was high functioning, so we didn't have "as far" to go as some kids. Ironically, many kids I know have made greater strides than Leo, but because they started out with more issues, they are not as high functioning as Leo today.

Leo continues to lead a discrimination-free life and is judged as an individual, like ALL children should be. We continue to keep the bar high for Leo, along with his 5 year old sister. I think they can do anything! That bar helped him succeed and fly through his programs when he was little and continues to keep him motivated and confident as a happy 7 ½ year old.

Cure? Who cares. Recovery? Whatever! Let's not get hung up on words. Let's get hung up on the fact that autism is a treatable disorder.
Maximizing the human potential is the brass ring my friends. Leo was lucky, like many others, regardless of outcome. He got what he needed, like every child, autism or not, should. Leo is just as lucky as the non-verbal kid that got a beautiful, fully funded program, executed by a state of the art talented staff.

July 11, 2006 - Lifecycles and Summercamp ( 7 yrs 9mos)
During the last days of 1st grade, Leo talked compared his life to the life cycle of the butterfly. He explained that he wanted to "start over as a chrysalis and go back to Kindergarten and 1st grade again" with his same teacher that he's pining over. Indeed, he was sad his time with 1st grade was over. Finally, he's happy that he's going to be a 2nd grader, and now appreciates his summer time off.

I was thinking about this while waiting in line to drop off Sydney (2 1/2 years younger than Leo) at that very same camp Leo did for years. That learning environment - so critical for his success. That foggy chronic blur of anxiety that lasted forever it seemed. And here I am again, like the butterfly, with Syd. Here she is, her rite of passage, ready to bound out of the car, Care Bears back pack, ready for her day in the sprinklers.

I look in front of me and get a wave from Caleb, a fellow ASD child that is in Leo's former shoes. He's anonymous like Leo, and his mom is in that mood state I know only too well.

For the first time, Caleb is going to camp BY HIMSELF. We celebrate! But, I get a wave of nausea, and after a couple minutes it
passes. It's just as hard, you get to this point and now you don't have all the information you are accustomed to - a beautiful full pageof notes. You have nothing but faith and your child to count on that all is well.

Leo and Caleb's former shadow, Laurie, is behind me in HER car, waiting to park - we exchange a nod. She's been coming here for years now, and today she begins with Brian. Laurie is a butterfly too. I wonder what she's thinking as she smiles at Leo who is hanging out the window talking to some kids. She spent all that time with him, she knows him so well. And ditto for Caleb. And here she's starting over with Brian.

I see all of these cars with people that have a different life than mine, Caleb, and Brian's. They are in the dark about what's really going on with some families - the struggle, all that stuff we all know too well. Yet, here we are, peppered all over the parking lot of this camp. All over town, all over the world, going about our day, no one the wiser.

Each day continues to be a gift. Leo's smile, his confidence, his desire to do things, to learn, to put himself out there. This reminder, although bittersweet, is a necessity - I don't want to ever forget.

The Physical Side of the Spectrum 7/18/06 (7yrs 9 mos)

Yesterday marked my bi-annual check-in with the medical community. What does this mean? Twice a year I must take my children to see our western pediatrician for a Well Visit, and yesterday was Sydney's 5 year Well Visit (the typical one). Don't you love this word? The irony!!!! So many thoughts come to mind I get dizzy just thinking how to arrange and dicipher them. Their definition of "well" is quite different than many parents with our kids. Indeed!

Don't get me wrong - I don't HATE western medicine. Quite the contrary, it's just not the be-all-end-all, one-stop-shopping. We do need it. I need it, but that's not all. If it wasn't for western medicine - neither of my children would be alive. Both were C-Sections, Syd had life-threatening bouts of the croup and survived by orapred and albuterol, and it would've been unlikely I would have made it back from my fall into major depression (thank you, Lexapro and Wellbutrin).

The days of western medicine ONLY are clearly over. Today we need nutritionists, primary care physicians and various specialists - heart doc, knee surgeon, neurologist, and chiropractors to get through our year. Don't you all remember when chiropractors were in the Voo Doo category? Economics have brought them mainstream via insurance companies seeing they work, as well as other alternative methods.

To make it bearable for me I prepare in two ways:
1) prepare a mantra for the vaccination spiel
2) select one or two questions that would be FUN to ask a western doctor

1) Mantra in mind, I sort of listen to the vaccination spiel, first from the nurse, then for our ped. The nurse says Sydney will need vaccinations, and I respond calmly and non-threatening "We don't do vaccinations, but thanks." The nurse responds in a scolding tone" OH, well she's going to really need them for Kindergarten - they simply won't let her attend". With no confrontation in my voice, matter of factly I say, "She doesn't need them for school. It's quite easy to sign an exemption form. Really, it was no big deal, pretty easy." Quickly, she backed down realizing I was simply hopeless. And of course she knew the options herself.

My mantra while my ped did his speech: "He is a good man. I know I'm doing the right thing", while remembering to breathe. Focusing on my breathe really calms me right down. When he finishes, he looks at me, hesitantly. Curiosity gets the best of him, each year. It's actually quite endearing. He says, "So when, if at all, do you plan on vaccinating?"

I say what I say each year, "We'll have to see what they learn about Autism over the next couple years. I'm a very conservative
person. Until they know more about the GI and immune systems of our ASD children, I will wait."

He knows the rest, over the years we've bantered back-and-forth about it all. The subsets of Autism. That I refuse to add to my children's toxic load. I don't care only about mercury. I care about cadmium, alluminum, flouride and other metals. I care about the viruses (envelope, live viruses, however they are delivered), and how they impact our children's unique systems. I consider the whole child and the impact of living on this earth. Other questionable substances have been discussed at length: grocery store sunscreen, conventional produce, processed foods, GMO's additives and preservatives. I am thinking about new info I heard from my Bioset allergist - that 'Big Organic' is requesting to spray MSG on fruits and vegetables. What? I'm not kidding around here. Can we all shout endocrine disrupters? Anyone, anyone?

2) I ask him if there's anything to do to "counteract" the effects of chlorine since the kids will be in the pool all summer. He said that chlorine doesn't affect them systemically, so as long as you wash it off topically, we should be fine. Interesting response! And that was what I was looking for, entertainment.

All in all, the visit was a positive one - Sydney did great with the eyes, ears, and prick test for iron. She's really shot up this year - 90% for height and weight. Leo and his dad are very tall.

Syd hands our ped a bag of leafy veggies we picked that morning (chard, spinach, lettuce, basil, and peppermint). A piece offering I suppose. He was delighted. I think of our ped's OWN daughter. They are almost the same age. I wonder what's in THEIR fridge. I wonder what her little brother will be like.

He sees us pay, and he can't resist. He comes over and casually asks how Leo is. I chirp back "He's doing great! He's loving
summer, and he's in camp right now." Maybe he's thinking about the 10 other ASD children that go to his practice and their quality of life. Who knows.

This experience reminds me how different each person on the spectrum is. Each person is their own special blend - we can't make blanket statements about treatment options. For more on this subject see http://www.hiddenrecovery.com/ and click on Therapy Bashing.

I think we were lucky - some kids are SO sick physically. More environmental, less genes/wiring I suppose. And some get better! I was chatting recently with a fellow recovered parent. Her son was SO sick physically. We didn't have that, it was pretty mild. With homeopathy, she was able to make him better physically. Because of this, he lost his autistic symptoms.

My friend has unique insight. Recently we were discussing those factions that dismiss any reference to Autism as an illness. For some, part of it is - hence providing another example of how different each person is on the spectrum. For us, if I didn't explore our biomedical options such as chelation, enzymes, and the GFCF/SCD diets, etc, Leo would still have communication and social problems. Was I wrong in doing these things? I don't think so! If I accepted his condtion 'as is' without exploring the viable options out there, he wouldn't have maximized his potential. For us, these things made an impact, a huge one. Again, Leo will always be wired differently, but today he is a healthier happier Leo.

My friend said, ' The fact that my son did get better proves it was not who he is. It was something that affected him.' And then later, 'Before the homeoapthy really kicked in, there were days when I questioned what I was doing and whether I should just give in and maybe consider it was just who my son was and then there would be glimmers of who he could be and I knew I couldn't do that. I couldn't just give up on him." And today her son no longer has an ASD diagnosis.

Today, both Leo and my friend's son are as healthy as they can be - we try every day.

Slumber Party Milestone 7/23/06 (7 yrs 9 mos)

Friday was my birthday - yes, I'm a ripe ole age of 41. Tradition calls for cake and dinner for our little family of 4 at home. We even have a hat and a plate that goes right with it. Tradition had to be postponed for a special invitation that Leo received - a slumber party.

Leo's friend Peter got to invite 3 friends over for a sleep-over after Peter's 7th birthday party. Leo was so touched that he was one of the 3. One parent declined , so it was just Leo, Peter and one other boy Aaron. The threesome went to bed a 10:30pm and woke up at 6am. He told Peter's mom - "I'm having so much fun. I'm going to tell my Mom I had a blast!". Later, Peter's Dad heard Peter and Leo talking at 4am. He went in and said, "Hey, guys, okay now let's go back to sleep". All heads were in the middle, bodies in their sleeping bags - Leo, Peter, Peter's little brother, and Aaron. Adorable.

I happened to drive all of the boys over after the party. Those precious conversations I'll never forget overhearing - "Do you have a guy, you know a stuffed animal to sleep with?" And later - " Yeah, I do. Let's all get our guys out for the movie, okay?" And sure enough, peter's mom said they watched Sponge Bob with their "guys". Later, the picture showed them all crashed with their stuffed animals.

The amazing news is this - Leo is strong enough to handle less sleep, and sleep out of the house on the floor in a sleeping back, and some non-GFCF, processed foods. The old Leo would have been "put out" for days if he had bad food or less sleep. He is so strong now! I am confident he'll get his needs met. I am confident he'll call me if he's sad or needs something. I am confident I am truly blessed. Sure, we all thought it was weird that he wasn't home that night, but it was great.

The Mom and I discussed the food options and planned accordingly - enzymes included. She was the perfect first host for this
milestone. She was sensitive to his needs "right food right time", since he's very hypoglycemic as well (duh, right?). Leo has also
spent a lot of time at Peter's house and with Peter in general. Perfect! And for the record, she doesn't know of his past diagnosis or differences.

I also must comment it was a milestone for me. My challenge each day as a parent is to balance my personal issues with parenting. I strive to make smart choices for my children without my issues interfering.

I had a BAD BAD BAD childhood. Let me say it was just BAD! So it was huge for me to let Leo sleep over with another MAN in the house, a potential predator. Natch, we adore Peter's dad, but how can we ever know for sure he's okay? Or even Peter's mom? I think about this stuff every day - I think about how Leo's elementary school doesn't have a fence around it - anyone could walk out of the woods at any time during recess and grab a kid and disappear. I think about the loose security about pick-up and drop-off at school and now at summer camp. True, this IS Wisteria. True, safety is the main reason why I chose this town we live in, but STILL.

Indeed, I casually quizzed Leo about the camp counselors - did they see him change into his suit? What did they do in the pool? I am lucky Leo is very open and descriptive - those early intervention hours are still paying off!

To top it off Leo, chose to have a nap the next day, which secured the likelyhood he'd have a better day. What good choices! What a little man!

July/Aug 06 (7yrs 9 mos)-
Vacation was great. Lots of water parks, swimming, parties, and sleeping in many situations. Eating lots of different foods. Unstructured time. Lots of Uno, Battleship, and bike riding. Phones were buzzing in our small town after class assignments for 2nd grade were sent out. Leo is with his best friend again. Woo hoo! He loved 1st grade without him...will he be a crutch, too much of a distraction? Ah, the anxiety never ends. Working with a homeopath for hypoglycemia. That would be a big load off, if he and I didn't have to manage the frequency of his eating so much. We'll see!

Aug 22, 2006: 7 3/4 yrs old
The concept of time broadens. Recently Leo asked me who his first friends were. He's asked me many times in the past, and each time there is a new layer of understanding, like the layers in an onion as they say. We started with the friends he knows in town, which is what I thought he was driving at. His oldest friend, Janie, he met when he was almost 2 (just right around when he was diagnosed). I finally explained that technically, his first friends were from my Mommy and Me group in NYC when Leo was just an infant. Tiny infant friends. He said, “Wow, I’m sure you had to take a lot of classes on how to be a mommy. You
had to learn so much since I was born first”.

I thought, what irony! The assumptions he made on his own about being a mother. If only we had all taken mommy classes before the hospital handed us our tiny newborns, and fend for ourselves. Leo assumed, that of course we all had to be trained in order to do what we do. After all, that's what HE does, right? Goes to school, learns stuff at home. Experiences life. He's fully aware of what he understands versus the breadth of understanding that us adults in theory have.

It also reminds me of what a blogger said once, that our children are at their most intuitive time of their lives as toddlers. They do not have enough life experience just yet to make assumptions and generalizations, and better yet make false assumptions. I had to break the news - all of us new parents pretty much wing it. Nothing prepares you for parenthood.

Tuesday, August 29, 2006 (repeated from blog) 7 yrs 10mos)
Taking the Disability out of Autism

And what is left? A person that's just different.

Leo began 2nd grade on Monday. It's Wednesday, and I keep thinking I ought to be documenting as always. It's a strange thing - I have nothing exciting to report about Leo (me, yes, see below). No issues, just stories about his "specials" like music, gym, art, and library. As with Leo's former teacher, Mrs. P. doesn't know he used to have an IEP. Time will only tell how his executive functioning differences/issues will play out. (see first grade, 6/22/06). I haven't figured out how to tag, sorry!

The way he processes will always be different. I'm guessing it'll be the same as 1st grade (talking out of turn, calling out answers, finishing sentences). His former teacher speculates this will still be his challenge, but that he'll be able to improve, slowly, over time. And it also depends on his new teacher and what her tolerance level is. Who knows. He isn't the only one doing this, but Leo has his unique reason why. On my list of stuff to worry about.

Weird. I spoke to an ASD mommy friend on the phone today - as with all of us, we are checking in with our friends to see how the first days of school went. I said, "You know, It's been very anticlimatic." First grade was the *big* transition. As I've been told by many people, 2nd grade is really like a reinforcement, a repeat of the concepts in 1st grade. Okay, that's fine - Leo is "one of those ASD kids" that excels academically.

The desire for sameness. Check. The desire for structure, predictability. Check. Knows the school inside and out, has his best pal in school, same bus, same driver. Check. He knew 80% of his classmates already - from our small town activities, some from kindergarten, some from 1st. Check (and nice!). He still gets to see his former teacher for hi-fives and hugs. Check (and bonus!)So far has no issues with school. He's doing the same thing he did last year, only the classroom is 3 doors down.

Leo's kid sister began kindergarten and now he sits with her on the way to school. They are extremely close, and I love that they now go to school together, and say hi occasionally during their day. Their best friends are also sibs (kind of creepy I admit), so it's quite a close-knit situation - we all know everyone's business, and it's transferred through the siblings. Another solidifying part of his life. A safe place to try new things, put himself out there. To grow.

And what about this new safe haven we've built for Leo? Knowing everything, the structure, vs. everything new, more chaotic and diverse?

The close knit community - really wonderful families that have the same goals and values (aside from the super-Christian stuff). Everyone seems "the same", very Stepford, but not in a bad way. Just in a "sameness" way.

What if we had moved back to California and I went back to work full-time? A big cost-of-living difference. Private school a sure thing. Questionable neighborhoods, stepping over homeless on our way to the grocery store (well, HFS!). What if everything was new? Would Leo turn out more prepared for a cubicle in the future? For college? Am I fooling myself into thinking this is the real world? Is there a downside to creating this environment?

I moved every 6 months as a child. I don't remember any friends, except a picture I have of a beautiful East Indian girl named Marcie that "was my best friend". I can only recollect the photo and a few memories. And then there's the abuse and no parents to give me a foundation. As they say, "what doesn't kill you makes you stronger." I am living testament. I'm sure I'm overcompensating, but I really wanted, ASD aside, to raise my children in a consistent solid environment so they could blossom.

Ahh...The comfort zone

Will Leo be ill-equipped to handle the real world? Given his difference, is this lifestyle a blessing or a curse? What about experience in chaos?, grown-up chaos? What are the downfalls, at age 7 (almost 8), to being exposed to more diversity (it's quite white and Catholic around here, and Leo is half Jewish). Raising kids in a safe place - when is that not a good thing? What if Leo fell asleep to the sound of garbage trucks and sirens, versus bugs and birds, and you can see the stars like it was day? All the pets. The garden, being connected with the earth? I'm keeping my options open - charter high schools, private schools for down the road. I want to be prepared for every foreseeable scenario. I realize this is impossible, but hey, I have to try.

Although Leo's environment is quite cookie-cutter, I try to live my life by example. I tell Leo I voted Democratic when it's a Republican town. I explained homosexuality, hurricanes, poverty, global warming, and other topics that don't gel with his (and my) fantasy childhood.

As always, I am reminded of how far he's come. How truly disabled Leo was. A bus will never be a bus. A hallway will never be just a hallway. I re-read the note from last year to edit for his new teacher about his "food allergies" and hypoglycemia. (He requires an "extra" snack in the afternoon since he needs to eat around every 3 hours). Boy has he become more independent! Leo's Autism no longer disables him. He still has ASD, and I love those contributions madly. I honestly do. But he no longer has anxiety, chaos, and challenges that are often associated with ASD.

And what about Mom?

I'm plugging away at my IEP goals for Leo. I am a list keeper since it keeps me really organized. Here is my Worry List for Leo:

1) Worry about Leo's calling out, and talking out of turn
2) Worry about soccer. This year they now add a practice to the week, and they actually play positions. Like the last couple years, this is regular soccer organized by the town. I wasn't welcome to participate in special ed soccer because of Leo's status (see discrimination for more on this). He's not the worst player, but he's not great. This should be interesting, to see how he can "juggle" what everyone is doing and what he should be doing. Theory of Mind comes into play, and I hope he holds up the ability to see intention amongst his fellow players. I hope he can hold his own, as many of his friends play, and he loves to be with his friends AND he loves soccer, especially since the world cup.
3) Worry that something else will come up where he'll stand out and it matters to him.
4) Worry if Mrs. P. actually "knows" about Leo's past. After all, we've been going to that school since Leo was just 3 - tiny short legs swinging from the big kid chairs in a cramped office for speech.... She's been there forever, and her classroom was close to where "the fireworks" of my tirades and other heated meetings took place. All of Leo's IEP meetings where held there and he got services from 3 to 5 there -
7 hours per week. And again, my worry is only because I don't want teachers to treat him differently, which is why we keep Leo's label a secret.
5) Will the "finishing sentences" thing manifest into a secondary disorder in the future, such as OCD? I know I can be very OCD.

So what else can I tell you about Leo? He loves soccer and football. He plays immediately when he gets home - very "organizing" for him. A nice transition. He has lots of friends that are very different. He used to only be attracted to the loud "boys' boy" kids, I think at the begining because their social cues are easier to pick up (the whole neighborhood could pick them up). Now he likes all kinds of kids, and his list of friends are as diverse as they can be.

Leo continues to be best pals with Sydney, his younger sister. She's quite precocious, so it's a nice match. Sometimes they act like twins. They also share a room - bunks, so they just don't know life without each other.

Leo LOVES Lizzy McGuire. He watches the series, but insists his favorite is the movie where they go to Italy. He's not embarrassed that he likes a "girl" show. Big news? The Cheetah Girls 2, the movie, just came out, and by god they love it. They've watched it every day since this weekend.

Topics? For some reasons he's asking a lot about Egypt. I can usually figure out the genesis of something I think is random, but for this I can't. He also likes anything travel related, and loves looking at maps and hunting for countries. He likes to know what countries are in which continent, etc.

He also is figuring out tornadoes, hurricanes, and other disasters. Funny - that's what happens when they can read the news. Leo will now read the Sports section of the newspaper (this happened on a plane on the way back from California this summer). Sydney was reading the front page, not understanding anything. All 4 of us were reading sections. I thought, WOW. We've transitioned.

And speaking of transitions, I began my job today as a preschool teacher - my 2nd year. This year I have 20 hours. Sydney began kindergarten. My husband had work per usual. We all had places to go this morning. Our own separate lives with our own goals. Scary, exciting, and fun, all at the same time. Life goes by so fast. I told a friend recently that it was quite disconcerting how time went by so fast now that I'm in the 40s (41). My friend said:

Pay attention.

6 To 7 Years

2007-04-01T08:00:00.000-07:00

Kindergarten – Fall 2004 (6 yrs)
His teacher has 25 years experience of teaching, and never thought anything. In our parent-teacher conferences, she described him as very social, outgoing, and very empathetic and good natured. No problems, other than he got too rowdy with his friends and talked a lot on occasion. Music to my ears, the kid that couldn’t speak at the beginning. I obsessively inspected every piece of art on the walls in his classroom, comparing and looking for anything, and I found nothing.

Leo’s kindergarten was half day, so it was a step back from what he was used to (he went to day care and preschool which made a full day). He was exceptional academically, as many of our little smart guys are. He rode the bus every day, a feat I still can’t believe, when that type of stimulus would cause him to blow a fuse in the old days. He played with almost every kid in class, and relayed each day to me what he did, what happened, reporting the relevant information as he now knows how to do and appreciates.

Leo went to music, art, computer lab, and gym each week, looking forward to each special. He played beautifully and typically in every way on the playground and other times when he required to monitor himself. He handled himself beautifully when required to go from center to center, to do a project on his own, day after day.

Leo was always asked to have play dates with many different friends and his favorites.

Towards the end, the other mothers figured out that I always had good information about what went on in class, any incident, etc, so they’d call me to find out. They were so impressed by my relationship with Leo, and his ability to share his day. They appreciated it! Many parents also commented on how socially sophisticated he was – when they volunteered, they’d have full blown conversations with him, about the weather, sports, the weekend, a holiday, whatever was going on. They were very impressed and would call me to tell me about him.

I’d obsess over watching the kids at birthday parties, and to my surprise the kids actually gravitated towards him, he was in the center of it all, after years of being on the periphery.

I saw nothing unusual, other than his size. He’s still such a big kid, and we held him because he was a fall boy birthday (and secretly of course to finish his services so we wouldn’t have to move).

Leo brought his own snack each day to eat, and many of the kids already knew about his special snack from preschool. They didn’t care, as many kids did this. We said he has Celiac and a dairy intolerance. Everyone got that explanation!

Leo’s residual issues are health related. He must continue to be GFCF. Until there is a cure, his body needs help maintaining optimal GI and immune health. He has mild low tone, mild hypersensitivity in his eyes. This issue keeps him from being a super athlete, something he could care less about!

March '05 (6 yrs 5 mos)
Leo still continues to blossom. He has lots of friends and many interests. The other day he said, "Wouldn't it be cool if the ceiling was the floor, and the floor was the ceiling? We could walk all around on the beams and cabinets." I still get misty when he comes up with really imaginative things like that.

Summer'05 (6 yrs 8 mos)
Leo ended his year happily, and continued to play with his friends through summer at the local community pool, the park, and play dates. He hardly noticed me around when he was with his friends. All he wanted to do was be with them. He had no problem going to a new “big kid” nature camp, where he knew no one previously. He loved it, and quickly made new friends, and looked forward to it. Leo enjoyed family vacations and having new experiences over the summer. He easily used his time wisely, occupying himself with stuff to do around the house, outside in the woods, with his sister, his dog, whatever. A far cry from a kid who was terrified alone when I went to the bathroom as a toddler.

First Grade – Fall 2005
August 30, 2005 (6 yrs 10 mos) – copy of email to my family: I am happy to report that Leo had his 1st day of first grade yesterday! He loved the day, and immediately told me that hewas really tired. He likes Mrs. X, and liked seeing familiar faces from last year, soccer, and prek, and meeting new kids. It's a really great group - 12 boys and 8 girls,
all really great, and I know most of them already. Only one dud mom so far!

He really likes a boy Charlie that sits next to him. The cafeteria was a new thing, which he said he liked even though lunch was short. He ate almost all of his sandwich which made mom very happy. He said "I hardly talked to anyone so I could focus, mom". His favorite part of the day was that they had recess "TWO TIMES, Mom" on the big kidplayground. He also got to play with his best friend and a new boy at recess. Each day they have a special, and yesterday was library. I think
today is gym, Leo's favorite, with Mr. Y.

As the date was approaching, I was totally fine with the idea that he'd be gone ALL day, since kindergarten was half-day. And I was really looking forward to a structured day again. School is from 9a-3:45p, and there is a half hour on each side for the bus ride. That's a full day!

I kept waiting to feel sad about it, but it never happened until the night before! I was pretty nervous - mainly about Leo getting his snacks ANDat the right time.

I was very proud of Leo, because he remembered to have his snack at 10am, and told his teacher. She apparently hadn't read the note from that morning, and he explained that he had "hyperguycemic". She got the idea and found the note. He is such a good boy!Also like last year, I had a hard time with really not knowing every single detail about his day. I am lucky that Leo really does give me lots of stories and information, so I do get a feel, but it's not the same as when he had a shadow with him at school and I had a fullpage of notes to look at. I still can't believe we are where we are, he goes to school all day with no support, and he's totally flourishing. Especially when I see other kids walking around school with aides and I think that was us just over a year ago.

I've never been good with transitions - I've been a bit sad, but Leo is happy which is the better news. And Sydney has been a bit needy and misses Leo a lot. This has changed our relationship a bit too - just us girls during the day. She starts school afterlabor day, but it's just afternoons.

Just wanted to share the good news with everyone. Very exciting!
Thanks for listening, Ashley

5 to 6 Years

2007-04-01T07:57:00.000-07:00

Fall 2003 5 yrs

A surreal experience, the district gave us the hours we needed for Leo, no questions asked! Natch, they were blown away by our team’s presentations, but please, WHEN does it ever make sense or it the right thing to do??

Program Highlights: Fine Motor, Conversation, Role-Taking and Socio-Dramatic Play, Social Judgment, Cause and Effect, Emotional Causality, Perspective-Taking, Predictions and Inferences, Executive Functioning; Leo's progress has remained consistent across all environments. He demonstrates increased independence in both social environments(preschool and day care); and has been able to successfully participate in an ever-widening range of home and family-based activities as well.

Schedule: 5 hours a day of school, therapy before and after school each day, 2 play dates per week

December 8th 2003; (5yrs 2 mos) Inclings of impending lawsuit. Leo flourishing.

March 2004 (5yrs 5 mos); Lawsuit, fading services

Finishing Services – Summer 2004:(5 yrs 9 mos) He was deemed autism free that summer.

June 22, 2004. Leo began school label and therapy free. He no longer needed a shadow or any other services. We had our last IEP meeting where we closed his file right as school began. We were uncertain if we should have the OT monitor his fine motor or not. We decided that it was too risky, to blow his anonymity, so in September we officially closed his IEP.

As a preschooler, Leo received all of his related services such as PT, OT, and SLP at this elementary school. In our district, this occurs when your child doesn’t attend the special ed public preschool. These files were removed as well from each office. The therapists were delighted to do so, and are now big believers that Autism is a treatable disability. Only the principal, the school psychologist, and the therapists know of Leo’s past. His teacher, the parents, and Leo’s peers do not. This was a major coup, but we managed to pull it off. Lucky for us, there are so many kids (30% at least) that get pulled out for delays and issues, that seeing Leo in speech as a preschooler didn’t raise suspicion.

Many of Leo’s friends continued to receive speech and OT in kindergarten and 1st grade, but he didn’t, the kid with the former major disability! Of course, if something happens in the future, we can always open a new one – it’s Leo’s right by law. An issue is an issue.

Summer 2004 (5 yrs and 9 mos)

Succeeded in getting full reimbursement plus attorney’s fees for ABA therapy for the school year. For the first time in 4
years, we were able to take a vacation longer than one week. Therapy kept these trips short. Leo monitored himself beautifully all summer long at camp and on vacation. Each day he found different things to do, kept himself busy with his new downtime. In California, he handled his new environment beautifully – really seeking out new people and new experiences. He had very little trouble with no longer seeing our extended family – his therapists. We were sure to visit them occasionally and keep in contact to ease the transition for all of us.

Fall 2004 - First Day of School Story (5 yrs 11 mos)
Began kindergarten, no services! Because of the way Leo presents, it has been possible to keep Leo’s label unknown to his peers and their parents and friends. With the successful completion of ABA, Leo was able to enter kindergarten with no shadow or other obvious ABA services. His classmates at the elementary school will have no reason to know of his disability or of the obstacles he has surmounted. Without the stigma attached to an autism label, Leo should be able to be treated as an individual, not as a label.

That first day was a very exciting and nerve racking day for us parents. Leo was not nervous at all, and really looking forward to seeing the kids he knew and being a big time kindergartner. My former arch-nemesis, Leo’s former favorite perseveration object, the school bus, picked him up like he’s been doing it all year. Leo got on, looked back and waved. Crazy! We videotaped the whole thing – from getting dressed, to waffles, to backpack, to bus.

His little sister asked if she could bring her stuffed animal to the bus stop. Leo got very upset and said no. We asked him why he didn’t want Sydney to bring her animal (not an unusual occurrence), and he said “This is MY special day today, and I want her to concentrate on ME, not on her stuffed animal”. And amazingly, she agreed to leave it at home. I love my kids! Unfortunately that morning we learned that Leo’s grandfather had died the night before. We didn’t tell him of course, until later that afternoon when we had no choice.

We sat him down and told him what happened. He grew very solemn, and said my autistic son said “I knew you were going to say that”. I had prefaced the news by reminding him of his grandfather’s age and how sick he’d been. Then he burst into tears. He said “Grandma must really miss him, she must be really sad”. A few minutes later, my autistic son said “Big D didn’t even get to hear about Kindergarten.” He then looked down at our new puppy, and said” And he didn’t even get to see Shawna”. We explained to him that he can see everything from heaven, and that he’s sooohhh much happier now and is very proud of him. I quickly summarized in my head his responses to what had happened, noting his perspective-taking, empathy, intent, and prediction within that exchange. I still have that therapy hat on I suppose. Later, he looked forward to going to NYC to cheer Grandma up and spend the night.

With one month under our belt, I am living a surreal life. My new goals are to take better care of myself (the usual suspects like loose weight, eat better, exercise regularly), and to focus a little more on my daughter – get her into more activities and get her some friends.

Leo continues to blossom. I am still nervous that one of the parents will find out about his “past”, and I continue to wonder about Leo’s development. Will I ever be able to look at one of Leo’s play dates again without inspecting, casually quizzing the mother, asking myself if Leo does has their skills, does this child do what my child does? What if they are all wrong? What if we made a grave horrendous error? And we pay dearly later and have to start over? What will middle school be like? What will puberty be like? Will my life always be this way?

4 to 5 Years

2007-04-01T07:56:00.000-07:00

February 2003 4 yrs 4mos
Dream Team assessed Leo over a period of a couple weeks. We were then up and running with a direct instruction program, and shadowing at daycare and camp (this was summer). Increased: Self-confidence, tolerance for a busy environment, initiation, less anxiety, enjoyment of preferred and nonpreferred activities. Wide repertoire of skills keep him part of the group, does not stand out. Dream Team developed an ideal scenario for Leo’s last preschool year. They looked at the environments, curriculum, style, teaching staff, and most importantly peers. They decided that a combination of daycare and his current preschool would make an ideal social environment for his final year. Goals: Self monitoring skills, monitoring others, interpreting various social situations, peer group entry skills, pragmatics,
perspective taking, abstract reasoning skills

Before this intervention, Leo could never play alone or with a peer without prompting and redirection. Leo now has a wide range of play skills. He can have 5 conversation exchanges with a peer about something that is not his topic. Some of the programs Leo has mastered or greatly improved upon; symbolic play, tell me about, tell me how to, topic towers, gross motor, same/different, senses, WH questions, preferences, intentions, features, inferences, flexibility, barrier games, cause & effect, concepts, constructive play, desires, drawing, emotional causality, fine motor, humor, verbal inhibition, knowing, role taking, sensory perspective taking, social judgement, listen to the story, thinking, TOM, figure of speech.

Reduction or extermination of the following preservative behaviors: question forms, banging with hands, flicking with fingers, stamping with feet (walking and running hard). Chanting made-up words. Banging and chanting at nite b4 bed, stuffing hands in mouth at any time, especially when in transition or ‘shy’ in a novel situation. Staring at drains and toilets. Staring at wheels on cars. Mealtime sensory issues: Over-stuffing, putting hands in mouth. Putting spoon over mouth and pressing hard. Eliminated fear of toilets.

Leo understands and appreciates that I do not know what happens at school, and that I am interested in hearing about it because I love him and that it’s my job. He tells me about things that he knows I want to hear, like about who he played with, what kind of art he did, if he had a special job, etc, with no prompting, He will just tell me about school because he likes to share that information, and he knows it’s what I wantto hear. He’s proud of himself, and likes to please me. Leo will tell me a story about what happened at the grocery store with Dad, knowing that I wasn’t there. He knows what I like and do not like to talk about. He understands that people like to listen to and discuss novel things, not stuff they already know about.

Recently Leo asked for a piece of gum. He knows Sydney isn’t aloud gum because she is too little. She came into the room while he was chewing gum and I was eating a shrimp salad. Sydney immediately asked Leo what he was eating, and he replied "shrimp", and turned and smiled at me. We both laughed, and then I cried.

I picked up Leo after school one day, and told him that we were not going home, that we were going to someplace that’s a surprise. He pestered me for a few minutes, and was really excited about the prospect. He then turned to his 2 ½ yr old sister and said, "Leo, do you know where we are going?". Since she heard me talking on the phone earlier, she said "We are going to Tim’s house!". He smiled at me triumphantly, and then we both laughed.

I heard Leo use the bathroom, and did not hear him wash his hands. He came out and I asked him to go in and wash his hands. He asked me how I knew that, and I told him to figure it out. He told me that I must have not heard the water faucet come on. He was so proud of himself!

While he may not be happy with an event, he does understand that sometimes stuff happens by accident, that a friend may bump into him or that Sydney may ruin a block tower. Leo is beginning to understand that people and animals are not always nice, that they sometimes dobad things on purpose, or that they are just bad (good vs. evil).

Leo guessed that I was talking to his dad on the phone. When asked how he knew, he said “because you answered Hi Honey.”

June 2003 4 yrs 8 mos
Client: Leo Morgan Date of Birth: October 15, 1998
Age: 4 Years, 8 Months Date of Report: June 12, 2003
Submitted By: ABA Supervisor
NOTE: This is not the entire report, just the part about his current level of functioning:

Current Program
Leo’ program has focused on the development of play, social skills, social-cognitive skills, and executive functioning.

Play: Upon initiation of services, Leo had a very limited play repertoire, and virtually no elaborated constructive, pretend, or socio-dramatic play. Leo is now able to participate in constructive (e.g.: block or other bulding materials) play, and to include minimal use of narration and environmental sounds in his play. These are, however, emerging skills, and neither his constructions nor his narration is at the level of sophistication demonstrated by his typically developing peers, and his play tends to be simplistic and/or perseverative. His ability to engage in pretend and socio-dramatic play is also limited to a small number of brief scenarios.

Social Skills: Leo’s ability to respond to and make simple social initiations has improved remarkably over the past year. At this time, independent functioning in this area is at or about 70%. Leo also demonstrates an emerging capacity to employ several alternative strategies in order to gain entry into an on-going play activity. He continues to experience some difficulties with self-regulation, and has not yet learned to discriminate between peer behaviors that are Okay or Not Okay to imitate in the classroom environment.

Social-Cognitive Skills (Theory of Mind): Leo continues to demonstrate marked deficits in the ability to understand that other people have different information, sensory experiences, emotions, preferences and desires. He also experiences difficulty recognizing the social cues that are indicative of these feelings in others. As indicated in the Yale report, he will require intensive training in the areas of cause and effect, emotional causality, sensory perspective taking, preferences, desires, inference, and prediction.

Executive Functioning: The skills included in this area are those that allow one to plan and carry out more complex activities. Leo demonstrates deficits most notably in flexibility of thought. He is not currently able to generate alternative outcomes, solutions, or applications in order to predict and problem-solve.

3 to 4 Years Old

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October 2001: (3yrs) Transitioned from 0-3 to the School District. All therapists and Yale recommended typical preschool since he was doing so well in daycare.

Schedule: MW speech, W Gymboree, TuTh mornings typical prek, F full daycare day. Usually 2 play dates per week. Time
spent with peers per week is 16 to 18 hours per week, depending on play dates.

Issues: Driving concern is perseverance play, narrow interests, and sensory issues will interfer in concentration, learning, and socialization in school. Lack of self-monitorization, low frustration point, low confidence level, wildly fluctuating arousal level characterize his vulnerable areas. Parents fear he’ll get behind in skills again due to the amount of time spent on behaviors. Parents also fear his behaviors will interfere with him to make friends.

In general, Leo seems uncomfortable with himself, needs constant adult interaction to be content. He’s rarely able to tolerate
being alone in a room while mom is in another for more than a few minutes. At approx 2 ½ years, he’d tolerate being with his
therapist or others without mom in the room. He rarely plays independently unless he’s watching a video or doing a behavior. Even then he’ll seek an adult for company. He’ll participate in activites and be social with other kids as long as he’smonitored. We strive to change his en216;stuck’ on something else.

Leo’s turned out to be a very friendly, gentle little guy, that is almost always interested in children. However, Leo often misses
social cues. We are not sure if it’s an age thing or a PDD thing, or a combination. Some of these are; Talking to people out of range, like through a window. Seeking rough-housing play with a friend who CLEARLY isn’t interested, and Leo won’t stop. Asking someone if they’d like a french fry, the person says ‘no’, and he keeps asking. Sometimes he’ll repeat a request over and over, not realizing he must change how he’s asking, speak louder, or perhaps he doesn’t have the intended person’s attention.

Perseveration has always been the largest issue. About once a month it manifests into something different. It’s usually some
object and some type of repetitive movement. Leo is very easily redirected by an adult. It’s just that left to his own devices, he’ll seek these behaviors 50% of the day. He continues to need adult interaction.

Cars & trucks continue to pacify him when he is stressed, tired, bored, or isn’t monitored by an adult. He’ll take matchbox
cars and hypnotically role them back & forth on a table, floor, or on himself. He also will closely examine them, 3 or 4 inches
away from his face. He’ll be in a very low arousal state, appearing tired. Often, he’ll lie on his side while doing this. We’ve
compromised by allowing him only matchbox sized cars, as they tend to not interfere in doing other activities like large toys
do. We also stress playing with them appropriately.

Tapping: Lately, he’s been tapping his hands and feet. He’ll often drum very loudly while chanting Ba Ba Black Sheep, Happy Birthday, or something he makes up. He likes to bang on a ball, tables, and the floor. He also likes to run around the kitchen table, limping, stamping very hard, while chanting. He’ll do this for 10 seconds or 20 minutes, depending on his needs.

Visual discrimination: Leo will often fixate on a certain characteristic. One day he’ll say “you have a neck”, as if he just realized we all have one. For one week he’ll comment about how this person and that person has a neck (belt, nose). He continues to gravitate towards purple items, and will prefer a puzzle with a purple background. Sometimes he’ll notice the smallest detail, and other times he’ll miss something really obvious. He can’t seem to get a game where you hide a toy under one of three cups, move them around and he has to follow and pick the correct cup. It’s like he just can’t follow with his eyes, and it seems like he’s really trying.

Past behaviors include opening and closing doors &cabinets, carrying around and being obsessed with milk cartons, purple
items, and seat belts. Occasionally he’ll perseverate with scripts, repeating something a request 30 times in a row. It was really bad, all day for a long time. Now it’s minimal, but does come up every couple days. Other significant behaviors include
watching water flow from hoses and cups, and loves to put his hands under the water in the sink.

Stimming was reduced to approx. 50% of the time. We carefully monitored vehicles, as he was playing with them appropriately as long as we were present. Once we weren’t, he’d start to stim. Visual discrimination deficits became more apparent. Ex: Realizing that all people have a neck. Checking each person he sees, and amazed at this fact. Talking to people that were outside through a closed window. Obsessions changed every few weeks, becoming more sophisticated. At this point he loved to hold several milk cartons, and tried to snow us into thinking he is pretending with them, when he was actually just staring at them.

Parents rejoice during Leo’s third birthday party, looking back at the long hard year, and see a happy healthy boy bouncing
on his trampoline outside with 5 peers. Laughing, chatting, initiating chase games, Leo is the social butterfly. We look at
each other with tears of happiness rather than sadness like last year.

Leo is re-evaluated at Yale. Even Yale was shocked at the level of progress Leo had made, validating all my time and hard
work with Leo. They again gave us great direction on how to address Leo’s social issues, how to specifically teach him these
skills.

Communication: Leo’s communication problems contribute to his social and emotional difficulties. Has a hard time integratingall social elements together (ex: asking a question but not looking at the listener). Has a tough time shifting attention betweenobjects and people, which provides a foundation for interpreting intents, perspectives, emotional expressions. His language strength is misleading in that his grammatical morphemes & sentence structures are constrained given his language stage. His use of over-generalizedword forms (from word retrieval difficulties) compromise the clarity of Leo’s messages, likely to lead to frequent communication breakdowns, especially with peers. Uses scripted language. Decreased sense of himself as an effective communicator. Decreased rate of self-initiated communication. Leo has sentence formulation difficulties and trouble monitoring interests and intents of conversational partner. These vulnerabilities need to be aggressively addressed in order to prevent behavioral difficulties, frustration, and to foster social and communication development, to establish social relationships and benefit from an academic setting.

Examples are:
1) Leo has a hard time sharing since he can’t expressive himself efficiently in the heat of the moment (word retrieval). (ex:
easily yells and grabs during a dispute over a toy)
2) Leo often can’t effectively explain something or “read” his listener. (ex: Still tickles a friend after friend frowns and backs
away)
3) One-on-one we can see frustration or anxiety and diffuse or help him, in less controlled situations it’s difficult (ex: kids all
doing same activity)
4) Can become overly focused or rigid on toys and materials, less able to utilize context to correct erroneous impressions (ex:
seeks and covets all purple crayons while coloring with others, misses out socially)
5) Seeks out adults to navigate the social environment, using adults to clarify things for which he has less of an intuitive
understanding. (ex: uses lots of questions to show anxiety, requires lots of explanation – we are his eyes and ears to the
world.
6) Likes topics in immediate context rather than past events. This is due to word retrieval, and lack of awareness about what
the listener knows and doesn’t know. (ex: he doesn’t realize Mommy didn’t go to the museum, so Mommy can’t comment or
explain things)
7) Tough maintaining a simple conversational exchange beyond 3 to 4 conversational turns. (ex: If he can’t “say what he
wants to say”, will back out by changing the subject, using humor, or other distractions that he knows will please the listener
(ex: “let’s color!” when we know his dislikes it)

Integration: Sometimes imitates without fully understanding the entire context. He’s vulnerable given he may reproduce an action or respond adequately to a social demand by modeling only part of the action. He responds appropriately without necessarily understanding the full context. He may pick one cue to respond to, say “That’s funny” without any facial gestures that would show he really thinks it is funny.

Novelty: Leo performs at a higher level, is more comfortable, speaks more fluently in familiar situations. If adults not present, will revert to more self-isolating style, more primitive play. Distracted by minor details, structure & familiarity will continue to be needed until a more solid sense of imaginative play is internalized. When modeling scripted/language isn’t available, as in novel contexts, his own rule system compromises his ability to form even simple sentences. This is why Leo compensates by copying others very well.

Associative Learning: He can’t take his knowledge of a concept and apply it to a novel instance very well. Has difficulty getting the context of a situation (defined by cues; changing facial expressions, variable tone of voice, posture, gestures). Learns by “chunks”, the way things occur rather than how they integrate with his internalized body of knowledge and experiences, making him particularly vulnerable to decontextualized copying of others.

Fine motor
Below average, at 31 month level. Ex: holding crayon effectively, drawing, imitating basic shapes. Can’t copy a 3 piece tower
(visual integration).

Baby is happy in bouncy chair or on my lap while I work with Leo. She can even nurse while I do this.

Holidays are spent as opportunities to have parties at our house, Leo learns to share well, tolerates the activities well,
although quite an overstimulating and exhausting time. Forms even more solid relationships with other family members, talks
on phone well.

January 2002:3yrs 3 months
Baby Sydney (8 mos) has been crawling for a couple months now, and is more demanding. Leo seems to have plateaued, seeing more of a gap socially during playdates. Frustration level starts to increase as Mom’s attention is diverted to baby. It was quite depressing to see Leo stimming more. Mom doesn’t have as much opportunity to work with Leo one-on-one. Very challenging to fit in that table time. Panicked, I discuss my concerns with the SLP and Guidance Counselor at the school, seeing if there are ways we can address his social issues better. They felt comfortable with his current services.
Waiting for Yales’ re-eval written report.

March 2002: 3yrs 5 months Although Leo seemed happy and still progressing in some areas, socially Leo continued to stay at the same level. The social gap seemed to be more apparent yet again. He began to hang back like he used to with children. Leo continued to demonstrate he can imitate well, although decontextualized. Showed he was a quick learner, responded well to direction and structure. Sought help again from school to no avail, sought private help, educated myself about how to best address Leo’s needs.

June-July 2002: 3yrs 8-9 months Completely burned-out, Mother found an ABA provider that specialized in social skills training for high functioning children like Leo. They started, saw immediate results (carryover). I felt tremendous relief that these two experienced therapists were working with Leo one-on-one, “putting the screws to him” just like I do, but even better since they are so experienced with these kids. Finally, professionals that address issues other than negative behaviors or academic issues.

September 2002: 3yrs 11 months After 8 months of very little intervention, Leo has an excellent program in place for this new school year. Leo was ecstatic at his preschool’s open house. He was excited to see his friends and teachers.

24 Months to 36 Months

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Fall 2000: 2yrs old
This was quite a busy, sad, and overwhelming time for all of us. Leo’s 2 year birthday party at our house brought tears of despair to our eyes. On a beautiful October fall day, about 6 peers played together outside while Leo, not even looking, was sitting alone on the steps staring at his firetruck. We couldn’t take it away, as he would’ve been miserable without it. We even got the fire dept to drive over a real firetruck for the kids to see and take a ride. Overwhelmed by the party, Leo had no interest in the fire truck. His dad made him go on it. Leo sat on his lap and tolerated it for a few minutes.

Yale evaluated him two weeks after his 2nd birthday. Even though you know what they’ll say, you never forget the moment they tell you your child has Autism (2 years old). They were so understanding as I shook and cried in their office. They described in great detail how Leo must be taught what comes naturally to typical children. That he’ll never learn these concepts and skills on his own.

They gave us proven direction on how to teach him while minimizing his stimming behaviors. They described how we need to engage and redirect Leo 24/7, every waking moment –until these skills can become his own. We needed to draw him out every moment possible.

At this time his imagination play time was approximately 2% of his day, prompted. Leo also was in poor physical shape at that time. He began the DAN! Protocol shortly after his testing.

Schedule: Kiddie classes 3X /wk, play dates at least 1X /wk, daycare 3 afternoons a week (6 hours), and 0-3 therapy 2 to 3X per week (home and daycare), and parent sessions 2X per DAY.

I decided to bite the bullet and force Leo into as many social situations as possible. I went back to having at least one outside social activity every day with kids his age. I’d insist he participate, or at the very least observe, constantly pointing at what he should be looking at. Ex: “Look at the teacher’s face. What is she saying to do?” My goal was to keep him with us, never letting him stim. 0-3 came 2 times per week, training me and Leo. I was so sick of having to be a two year old model for my son. He hated it, I hated it, but it was great.

I copied the therapists by working with Leo just like they did, 45 Min each morning that they didn’t come at the table. I also did this at night unless my husband was home early enough to do it. My husband concentrated on gross motor skills and confidence on the weekends by doing guy stuff, taking him to the playground, etc. He also did swim class with him, which Leo hated.

He cried through an entire semester of a kiddie class at our Rec Center. Preferring to sit alone, I’d carry Leo around with kids holding hands and dancing at Music Class. At a pre-nursery school class where parents came too, he’d try to isolate himself, making a beeline right for the trucks as we entered the room. I asked the staff to hide the trucks during our session, and I kept him engaged, constantly directing him to appropriate play, or telling him what to say to another child. We started Gymboree again, and this time I made him do everything the other kids did. I’m sure the other parents thought I was a hovering crazy woman, or that I was really competitive, but I didn’t care. Needless to say I didn’t make any friends that season.

I gave each caregiver at daycare a ‘one sheet’ on how to engage Leo, and to keep him with the other kids as much as possible. I explained to them that his disorder is no excuse to not participate or do tasks. He was expected to do what all the other kids do. I worked with them each week, each time there was a new person, making sure there was carryover as much as possible. They were complete angels and wanted to help. 0-3 also worked with them regularly while regularly working with Leo at the center.

Sample day: The first 20 minutes:

Leo wakes up, bathed in sweat due to his unusual chemistry. I change his diaper, grab his milk, and take him into the bathroom so I can shower. He happily sits down on the stool, knowing the routine. I give him 3 books to look at, placing them in front of them while I turn on the water.

Leo excitedly starts to take all my shampoo bottles and soaps, wanting to hold them. While shampooing, I constantly redirect him away from the bottles, trying to get him to look at his books. He keeps at the bottles. I then take an almost empty bottle, and challenge him to practice taking the twisting the cap on and off. He balks at first, then tries since I did give him one bottle to hold. He gives up quickly, and tries to hold and stare at it. I take it away. I rinse and start drying off. He cries, but after we talk about the sizes and colors of the bottles, what we use them for, I prompt him to say “yellow”, “big”, “little”, and “blue”. He says “yellow!” and I say “Good job Leo, you used your words!”

Happy with “yellow”, I move on to the books while I comb out my hair and brush my teeth. He starts to read Pickle and Blanket. He stops midway and stares at a page with a purple background, a favorite stimming color. I ask him to point to the little boy’s face, then the bear, and tell him about the picnic they are having. I ask him if he wants to go on a picnic one day.

We move into the bedroom so I can put my clothes on. He finds a ball that was under the bed and immediately starts spinning it while lying on the floor closely staring next to it. I can’t believe the ball found its way into my room, but shrug my shoulders, pick it up and talk about how we use balls. While bouncing, I say in my cheerleading voice, “We can throw them and bounce them! This is the right way to play with a ball.” I redirect him ten times, he stops spinning and actually bounces it twice. I smile and say “Good job!” I pull the shirt over my head, grab the laundry and my water glass, tell him 3 times to put the ball down, and walk to the stairs.

Each minute of our day is similar to the first 20 minutes. We eat breakfast, go to a kiddie class, put him down for a nap, grocery shop, make dinner, put him to bed. All the while I keep him present, listening, engaged, and playing appropriately every moment I have with him.

January 2001: 2yrs 3 months
Social schedule: 7 hours of daycare, 4 mornings a week classes or play dates, same 0-3 and Mom sessions.

Leo makes incredible gains. The DAN! Protocol makes a big difference is Leo’s physical well-being. His mind is now clear and as healthy as he’d ever been. His eyes, his skin tone, his face looked great. 90% of the time he would attempt speech rather than grunting or whining. Full sentences came quickly. His behaviors continued to decrease while his tolerance for novelty
increased. 5% of his day was imaginary play, sometimes without prompting. He was more tolerant of novel things. He actually
went over to his therapist who’d just arrived and eagerly looked in her bag to see what she’d brought!

The caregivers at daycare said he was a different kid. We couldn’t believe it. The Counter-Intuitive Parenting style worked. He started to parallel play with other kids. The old Leo would have headed in the opposite direction. 0-3 worked more and more with Leo at daycare, helping Leo in the social environment which clearly was the biggest challenge. They reported he was so pleased with the help. For example, one day he and another kid were fighting over a toy. His frustration escalated and he grunted and whined. The therapist gave him the words to say “Can I have my toy?” He turned to the other child and repeated “Can I have my toy” clearly, prompted to look at his face. The kid gave him the toy. He was DELIGHTED. It was like he thought, “Hey! It worked!” He was so pleased with himself. His self confidence, always an issue, increased as his success rate increased. It was one of those defining moments. He was no longer completely intimidated by children. Once a kid was jumping on a trampoline, smiling at him inviting him to join. The old Leo would have walked right by as if she didn’t exist. He
jumped right in.

EX: Since September, words have been coming faster and faster. The breakdown of the simplest of words seemed to have boosted his confidence. He will try 90% of the time to say a word. He enjoys talking and likes the attention he gets. He now says sentences regularly, and says words more clearly and completely. Examples: “Mommy get blue bus please”. “Daddy Wolfie’s ball please”. Bup is now Up, Uhm is now Come, etc. We still prompt for words, but not nearly as much. He comes up with his own combinations and new words that we’ve never prompted before. He always answers questions. Oddly enough, in the last couple of weeks he started saying “bye bye Mommy” or whomever. I find it interesting that he said Bye Bye last, after using full sentences. Most kids say it first. Although we are pleased language has replaced the whining, he is constantly repeating himself for his wants. We find he tirelessly tries to use language to control his environment.

EX: 5% of his day will be doing imaginary things, such as feeding a stuffed animal. So it’s a slight improvement. He likes to sweep and vacuum, which may be a perseverating/movement thing. I'm not sure. He has come up with scenarios that we’ve never shown him. He seems to enjoy them more and more. He is playing more often with little people toys and playmobil toys, and riding a stick horse both with and without his father, and enjoying it.

EX: Leo was jumping on a mat. Another child came up and started doing it too. Rather than walk away, Leo smiled and started jumping even faster. He followed her for a very short time. This has never happened before. He participates in circle time, art projects, whatever the rest of the kids are doing. Before he would watch from afar or participate rarely. This is true in his Music Class, Gymboree, and Pre-Nursery School class that Mom attends with him. He seems less intimidated and has
more confidence. We have worked very hard in training ourselves and day care staff to constantly keep Leo engaged, and we feel strongly this has paid off.

February, March 2001:2yrs 5 months Leo continued to make rapid progress as we tried to keep up with him, challenging himas much as possible, “putting the screws to him” every waking moment. One therapist said “One major part of my job is to convince parents their children are capable”. And this was true. He surprised us at every turn, meeting every goal quickly, eager for more explanation, information on how to communicate and interpret on his own. He was and still is like a big sponge. Leo began going to daycare 2 days a week for a 7 hour stretch each time. It was working so well so we added more. He really liked it now.

April 2001:2yrs 6 months Very encouraged that Leo tested age appropriate for speech. Hired a full time nanny for the baby that was due beginning of May. We gave Leo this first month to get used to Sylvia. Sylvia also got used to all the prohibited behaviors, etc. We took her to the grocery store, every class, all our hangouts like Duchess and McDonalds, the mall, Playzone, etc. We kept Leo going to daycare, naturally. She became comfortable driving our big car and learned how to navigate herself through our town. Our plan was for the nanny to keep Leo’s schedule completely intact, taking him to every class, to the park, etc., until I recovered from my planned C-Section. After that I would resume working with Leo constantly, keeping him on his schedule, until the baby became mobile.

May 2001: 2yrs 7 months As expected Leo regressed significantly for about 4 months. Relieved I had Sylvia in place, she took care of the baby while I kept up with our one-on-one. 0-3 recommended I add an extra day of daycare to provide extra relief for Leo. This worked really well for all of us, as he was either crying or whining for 4 straight months. Literally.

June thru Sept 2001: 2yrs 8-11 months Leo made his way slowly back to his previous level of functioning over the summer. Having me available most of the day to keep him present and challenged really helped. It wasn’t easy, as I was nursing exclusively, so I had to pump twice a day so I could leave the baby with Sylvia. His imaginative play really blossomed. He loved copying me by nursing and holding his baby doll, taking her for walks in the stroller around the circle. He also became fascinated with his sister, and found her amusing and an easy audience.

15 to 18 Months

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January – April 2000 (15-18 mos)
Stopped progressing, began stimming on vehicles. Within a month he was spinning wheels 98% of his day. Very little vocalizing, no progression with speech. He was so frustrated and whiny, acting so ‘helpless’ and ‘clueless’ most of the time. Severe sep. anxiety continued, even crying for hours with his babysitter he’d known for one year. Mother became concerned with his obsessions and lack of interest in other children.

Out of desperation, Mother put Leo in daycare 2hrs/3X week (6 hrs). Painful transition, nonstop crying or anxiety for 4 months, breaking the daycare’s record for a child transition. Instincts told Mother this was what Leo needed, to learn how to cope without Mom and even more exposure to peers. He went each time clinging to a truck, usually sitting on a willing caregiver’s lap. Always anxious. He’d mostly sit alone, stimming on the wheels.

Sample Day: Spend every waking moment spinning wheels of cars, rolling them aimlessly back and forth, all day, all night. He’d lie on the ground next to a car and stare rolling it back and forth. Also he’d roll it on himself. I’d cry looking at him through the daycare cameras. Sitting alone, across the room away from the other kids. I had to be happy he wasn’t crying, and that he wasn’t on someone’s lap.

Leo’s development reached a plateau across all areas, as his time was spent with stimming. Leo’s stimming became more sophisticated, language continued to stagnate, and separation continued at the same intensity. Daycare, Gymboree, and play dates continued, keeping Leo busy each day with something social. Socially, Leo started to really stand out. Always content on my lap at play dates, he’d focus on a playmate’s truck or other spinning toy rather than the other child. I felt I had no choice but to give up play dates and Gymboree, as both Leo and I were constantly miserable. Passed an ENT/audiologist eval. For more details, see new article in Autism/Asperger's Digest.

Beginning of services (16 months old)
We finally got him evaluated by 0-3. He qualified for speech, and started services with a Sp. Ed. Teacher 1X per week. Leo tested one year behind his age. Pointing, grunting, and whining was how he communicated. This caused an enormous amount of frustration for all of us. He had low self-esteem and was constantly frustrated. We were surprised to learn that Leo’s narrow interest in just trucks, books, and balls were a concern, and that this obsession kept him from learning other skills. We were clueless that there was anything wrong with Leo. We thought that speech was an issue, and maybe that the stimming was just a ‘phase’. That Leo was being a boy.

We were quite shocked to learn that we needed to drastically revamp how we parented Leo. It absolutely made no sense to us, to infringe upon Leo’s interests and freedom. We coined 0-3’s recommendations “Counter-Intuitive Parenting”. This philosophy went against all our natural instincts of letting Leo ‘be’ in a safe nurturing environment, giving him the lead to explore his world. Letting Leo spin balls and wheels, and throw balls wasn’t working. Instead of Leo taking the lead in his day, we had to. We had to be pushy, and structure Leo’s every waking moment.

0-3 taught us how to expose him to novel toys. They guided us to remove the desired stimming toys (vehicles and balls). We cleaned up the entire house, removing all clutter, and streamlined the toy selection to approx. one of each kind of toy. Since Leo was so object focused, he obsessed over toys, and we indulged him by giving him too many.

We learned that Leo needed to start using his eyes and ears, not ours. We had to carefully plan frustration and monitor that level delicately, always pushing one step beyond. For example, if he began to lose concentration while doing a puzzle, we’d keep encouraging him, cheerleading him through it. When we thought he’d had enough, we’d ask him to do one more piece, that one step beyond. We utilized every waking moment in his life – home, daycare, social outings, play dates, parties, to redirect him, teach him something, drawing him out of his world.

We set up stations in the family room, strategically placing a couple toys on the coffee table, a few spaced out. To our utter amazement, we saw within 2 days Leo walk up to his blocks and examine them for the first time without prompting from an adult. We were shocked to see he was fine without a room full of vehicles. Within a week, Leo looked more refreshed and not as zoned out. He became more interested in other types of toys. He became more and more tolerant of attending to task, and eventually sitting at a table.

He started saying words at daycare before at home. We learned how to play dumb, always creating a situation to get Leo to use words.

Ex: I’d fill his milk bottle up part way so he’d have to ask for more. To promote any utterances, we “rewarded” him if Leo said at least the first letter of a word. He caught on to this, and now will say the first letter and not attempt the entire word. He does the very least to get want he wants. We attempt to play dumb, and pick our battles and not give in, no actual words yet.

EX: Knows alphabet and becomes a stim.

EX: We discovered if we break down words Leo will often imitate that portion of a word. Perhaps it’s less intimidating for him. For example, for the word “open” we’ll slowly sound out, almost sing “ope”. We will often get an imitation of that portion of the word instead of nothing. He seems more bold in trying out words with less coaxing.

EX: Leo immediately rejects new books. He shows no interest and reaches for a familiar book. We have to “force” it on him, show him the pages, and eventually we can incorporate the new book into the rotation of books.

EX: Most kids his age seem to have gone on to the next stage of play patterns, such as playing with little people, playing with them in imaginary scenarios such as cooking, eating, driving, etc. He is fascinated if an adult does this, but will not play on his own like this. He will bring me toys to play with. When I tell him it’s HIS turn, he walks away, or asks me to play again. The only thing he seems to do in this area is push his trains around the track. The last couple weeks, he’s been imitating me calling the dog, and imitating what my husband does (hand movements, stance, etc.). He is however, extremely affectionate with his stuffed animals.

EX: Other stims: Leo has always liked things that are blue & white, such as the questions on Jeopardy. He also likesthings that are yellow. I think it’s because he is so fixated on school buses. He loves things that flicker. Likes patterns, such as crosswalks, tile, brick. At first I thought he was concentrating on walking. He’s been walking for over a year now, and still often looks at the ground. Likes signs, large solid shapes, clean lines. Loves music, his dog, going outside –the woods. Likes to play hide &seek, trains, cars, going on the highway, books, coloring, letters, and his kiddie classes/daycare. Knows correct color for known objects: for the sun, he’ll select the yellow crayon, for grass,he’ll pick green. Is beginning to learn how to count, although does not verbalize.

About a month into the services, the therapist identified several ‘red flag’ behaviors, and suggested seeing a Developmental Pediatrician. What the heck is that?? I began the painful process of educating myself about disorders,and suspected that Leo was on the Autism Spectrum. I dedicated myself to figuring out what Leo needed.

Biomedical

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Thanks to the Autism Society of America, Lisa Lewis, Karyn Seroussi, and the rest of the gang that paved the way, we have these incredible alternative treatments to traditional western medicine. Look up their individual sites for details.

There are newer groups such as LIA/Dr. Klinghardt, Amy Yasko, and other alternative medicine groups to look into.

Every child is different. What works for one may not work for another. This is why each child needs their own 'special blend" of intervention. Factors to consider: current level of functioning, past outcomes with certain treatments, current program, age, predisposition, behaviors, allergies, and financial, just to name a few! Prioritizing and working on one thing at a time is key.

Discover Magazine, March 2007 Excellent handout for skeptical relatives and friends. Describes the unique GI and immune systems of our children.

The Schafer Report The most read Autism publication. Read synopsis' of articles published daily. An Autism clipping service. Saves time for busy parents - all of the news in one document delivered via email. Database excellent for researching.

Autism Research Institute started the biomedical movement, by first looking at vaccines, our food supply and other environmental issues. Find your local autism pediatrician, naturopath (ND), homeopath, or nutritionist by going to: DAN list

DIETS: Any parent can implement a diet on their own with the support of online parents and recipe books. Since many children with autism have GI and immune deficits, it makes sense that approximately half of our children make improvement. Although food doesn't cause autism, a diet that is easy on a child's system reduces those symptoms. Your child's response will guide you toward addressing causative factors.

GFCF Diet Join this free forum about the diet. 7000 members! Tons of free advice and support.

GFCF Directory. Contains the "no" list and other helpful links to get you started.

Body Ecology Diet

SCD Diet

Allergies, Detox, Nutrition
These days there are so many wonderful practitioners to choose from that now have experience and training. Most of our kids have deficits in metabolic pathways which cause nutrition deficiencies, inflammation which leads to hyper-reactivity and allergies, and a build-up of toxins. We found Homotoxicology to be the most effective way to heal Leo:

Homotoxicology Mary Coyle, DiHom, originally helped us do our first long-term detox with this method. Later, Lauren Stone, PhD, continued this along with providing nutrition and Bioset care.

WHERE TO BUY SUPPLMENTS:
Try Kirkman Labs or Lee Silsby. Our ASD kids. There are many more!
You can do all your evaluating and shopping by yourself.

TESTING: Before you go and see an Autism doctor (nutritionist, MD, N.D., etc), become familiar with these various testing instruments. The more you know the more you can be a partner with your chosen professional on what steps to take, how to prioritize, etc. Also, tests are expensive so take a look at your options. Metametrix is my fave, a good place to start.

TacaNow.org Jenny McCarthy doesn't have her own official website, so for those looking for the information and stories she shares, this is the website to go to. Technically, this isn't her site. There are lots of great links, not just to Biomedical but to Therapies.

Celiac NewsletterEven though this is a different disorder, Celiac organizations have lots of good info about diet, restaraunts, support, and the latest in research.

AutismNDI is an amazing resource for all the studies regarding GI and immune deficiencies. The rest of the site is an excellent resource as well.

Recent Vaccine Rulings Only 3 bad ones, 1 good one, out of 5,500 in total on the docket. NEW

Generation Rescue believes that childhood neurological disorders such as autism, Asperger's, ADHD/ADD, speech delay, sensory integration disorder, and many other developmental delays are all misdiagnoses for mercury poisoning. Excellent data on chelation, now recommended for all ASD kids.

Vaccine Exemption Forms and Rights

Think Twice, more on vaccine info.

Flu Vaccine Info

Latitudes: An online magazine and forum for children with P.A.N.D.A.S. and other disorders

Dr. Madeline Cunningham, lead P.A.N.D.A.S. researcher

Lyme-Induced Autism Foundation (LIA): One of the many triggers for Autism, Lyme disease which is another epidemic. Our children have multiple infections behind their autism symptoms, with a compromised immune and GI system that sets the stage.

BOOKS:
For a complete list of books, click on Amazon list to the right.

Biological Treatments for Autism and PDD by William Shaw, PhD. (The DAN! Protocol bible)
Special Diets for Special Kids by Lisa Lewis
(SCD) Breaking the Vicious Cycle: Intestinal Health Through Diet By: Elaine Gloria Gottschall, et al
(BIOSET)The Food Allergy Cure : A New Solution to Food Cravings, Obesity, Depression, Headaches, Arthritis, and Fatigue by ELLEN DR CUTLER Go to Bioset Instituteto find a practitioner near you.
Children With Starving Brains: A Medical Treatment Guide for Autism Spectrum Disorder, Second Editionby Jaquelyn McCandless
Enzymes for Autism and other Neurological Conditions by Karen L. Defelice
Enzyme therapy is one of the fastest emerging successful alternatives for people on the autism spectrum as well as other neurological conditions. Reports of significant improvements in health, pain reduction, language, food tolerance, socializing and other benefits emerge daily. Drawing on long-standing scientific research and trials by awide range of families, Karen DeFelice deals comprehensively with all the information on enzymes that parents orthose new to enzymes need: how enzymes work, who may benefit, what to expect, practical tested advice on selecting and introducing the right kind of enzymes, and how this can be combined with other approaches and therapies.

BabyCakes Cookbook: For the mainstream/pop culture side of things, here is an incredibly good baked goods cookbook. The best cookies, cupcakes, muffins, you'll ever find!

He's Not Autistic But....
How We Pulled Our Son From the Mouth of the Abyss by Tenna Merchent (Author) "For no apparent reason, he bangs his head on window ledges, asphalt, the floor, and with his hands..."

Environmental books
Fast Food Nation: The Dark Side of the All-American Meal by Eric Schlosser.
The title really doesn't do this book justice. This book is really about the history of our food supply. Eric tells us all about the food we buy in grocery stores, restaraunts, not just fast-food. All parents should read this in order to make informed choices.
Especially considering that one in six children born have a behavioral disorder. Do you ever wonder why wheatand dairy is in all packaged foods? Did you ever wonder what is IN packaged foods? This book is 1/4 of this book is research credits.

The Tipping Point by Malcolm Gladwelll is a fascinating study of human behavior patterns, and shows us where the smallest things can trigger an epidemic of change. Several examples in history are presented, where one small change in behavior created a bigger change on a national level. He also studies the type of person or group that it takes to make that change. Lots of information about society!

Blink also by Malcolm Gladwell explores how us humans make decisions. Snap judgments and mind reading are explored. A focus on the meaning of "thin slices" of behavior vs "thick slicing". . The key is to rely on our "adaptive unconscious"--a 24/7 mental valet--that provides us with instant and sophisticated information to warn of danger, read a stranger, or react to a new idea. My idol, Dr. Ami Klin of Yale is quoted!

Evidence Of Harm: Research that correlates a subset of ASD to mercury in vaccines.

The Omnivore's Dilemma
Michael Pollan writes about how our food is grown -- what it is, in fact, that we are eating. The book is really three in one: Thefirst section discusses industrial farming; the second, organic food, both as big business and on a relatively small farm; and the third, what it is like to hunt and gather food for oneself. And each section culminates in a meal -- a cheeseburger and fries from McDonald's; roast chicken, vegetables and a salad from Whole Foods; and grilled chicken, corn and a chocolate soufflé (made with fresh eggs) from a sustainable farm; and, finally, mushrooms and pork, foraged from the wild.

Excitotoxins
Alzheimers anyone? Neurodegenerative disease anyone? MSG.....aspartame...hydrolyzed protein..

Our Stolen Future by Theo Colborn, Dianne Dumanoski, John Peter Meyers NEW (well, even though the book's been around since '95) Groundbreaking book that introduced the notion that phthalates (plasticizers) are endocrine-disrupting chemicals that interfere with development. Hmm....craving active synthetic chemicals, persistent synthetic chemicals, other persistent chemicals, hormone havoc, gross birth defects, hormone disruptors, hormone disruption, hormone messages, other synthetic chemicals, estrogen mimics, disrupt hormones, falling sperm counts, docrine system, estrogenic chemicals, male sperm count, crossed bills, hormone mimics, estrogen exposure, plant estrogens, striped dolphins, disrupting chemicals, dioxin exposure, genital defects, persistent compounds? Excellent. It's the book for you.

The Puzzle of Autism: Putting It All Together by Dr. Amy Yasko and Dr. Garry Gordon
Book Description (Note: To buy her book, go to holistic health.com)A Guide to Transforming the Treatment of Autism. For Parents and Physicians. "Any parent or physician reading this book should be excited and hopeful. This protocol has been a tremendous benefit to a number of children. It has worked for children of all ages, and no, this protocol does not require that your child be less than five years old. Individuals up to 30 years of age have seen benefits from this program. However, it is not a magic bullet. For most children there is no magic bullet. It is a matter of perseverance, and slowly working your way through the program to gradually reverse the layers of damage, and put all of the complex pieces back together and in working order. Yes, it can be done, and it has been done. There are always the "quick fix" kids. The ones that only need a few supplements or just the first phase of the detoxification program to be on their way to recovery. We all hear about those cases, and it seems like everyone except YOUR child falls into that category. The reality is that most children do not fall into the quick fix category. But there is hope for every child. So, take a deep breath,
get ready for the marathon, pace yourself, but above all else don't give up on your children."

The China Study: Referred to as the "Grand Prix of epidemiology" by The New York Times, this study examines more than 350 variables of health and nutrition with surveys from 6,500 adults in more than 2,500 counties across China and Taiwan, and conclusively demonstrates the link between nutrition and heart disease, diabetes, and cancer. While revealing that proper nutrition can have a dramatic effect on reducing and reversing these ailments as well as curbing obesity, this text calls into question the practices of many of the current dietary programs, such as the Atkins diet, that are widely popular in the West. The politics of nutrition and the impact of special interest groups in the creation and dissemination of public information are also discussed.