Tuesday, May 08, 2007

The Autism Most People Can't See

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

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

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

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

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

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

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

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

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

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

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

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

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

Other things I found interesting on our trip:

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

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

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

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


Laura said...

I was wondering where you were! Glad you survived your trip and Leo is back to "normal" (whatever that is, right?). I think I'd freak out if Hutton regressed at all. I mean, this would have to be after some further recovery. We're at the one step forward, half step back, but at least that's progress, right?

The peds remind me of my SIL & her husband - both peds expecting their first baby, but I really don't want to play the part of "crazy SIL" with her whacked out vaccine hysteria, you know? Fortunately Hubby is also as "whacked out" as I am, so if SIL were to ask her older brother for advice (not that she has) he'd let her know what NOT to do with a child with a close family member with Autism. I only hope she's reading the scientific articles I send her, and the awesome Discovery article from last month instead of say, Mademoiselle!

mcewen said...

Welcome back! Not sure if my reading ability is enhanced or 'disabled' by the horserider - certainly makes me feel vaguely sea sick!

Anonymous said...

What is that image? A deranged person on a horse??

Ashley loves Leo said...

Hi Laura and McEwen. I plan on catching up on my blog reading this weekend. Laura, those stinkin relatives and their western ways! ha ha

Man it's been pretty busy here! My husband had shoulder surgery, Leo had a field trip that I volunteered for, and regular life. I'm sure everyone else is in the same boat.

I LOVE my crazy horse person! It keeps me from taking myself too seriously - and others too I hope! I too get a little sea sick if I watch it long enough.

Definitely me on some days. If you must know, war paint symbolizes those days, bunny slippers and ears symbolize my favorite animal and college memories. I'm horse crazy. Sydney is going to ride this summer and I can't wait! The thing IS a bit too jumpy. I wonder if I could make it run around slower....I'll have to play around. Certainly fun to have a computer me!

Ashley loves Leo said...

Anonymous, if you click on the image, it'll take you to the page where you can make your own. A great task avoider activity.

Anonymous said...

No thanks. Can't afford to avoid tasks! Wish I had that luxury.