Sunday, April 1, 2007

9 to 10 Years

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?