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
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
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: