Friday, June 30, 2006

My A

A had his first full blown "episode" in front of others today since he's been diagnosed with Asperger's. Sure, we've been to Chuck E Cheese once before which obviously is overstimulating for EVERYONE and he wouldn't take his hands down from his ears the whole time we were there. We got strange looks, but at least he was willing to walk around a little. And he froze on a carnival obstacle course because of an unexpected noise and needed to be carried step by step up the rope ladder with me on top of him. But today was different.

My sister and I took the kids up to see my "blond sister" - a good hour+ drive but she's worth it! Apparently something scared A when he first entered the house and he immediately fled upstairs with his hands over his ears. I was getting J out of the car still, so I didn't see any of this. My sister followed him up the stairs to where he was standing, frozen in terror with his hands clenched to his ears, in one of the back bedrooms. She tried getting him to communicate with her but nothing worked, and just as I was noticing that he wasn't downstairs, she called me up. It took me a while, but I was finally able to understand that something on the tv bothered him. After I went to the stairs and called down for the tv to be changed, I was eventually able to convince him to come down with me with the promise of food. Every other time there's been a problem I have witnessed the start of it and was able to figure out what caused it. This time, because I couldn't, it escalated.

At a playdate yesterday, I told some moms that we finally got the Aspergers diagnosis. They all expressed such shock that someone as social and friendly and happy as A would be diagnosed with that. As the playdate progressed, I found myself pointing out the various behaviors that he displayed during the hour and a half that we were there that supported the diagnosis. The chapstick he found and smeared all over his face. The tv in the kitchen he turned on five different times. The toy that terrified him, causing him to be frozen with his hands over his ears until I could figure out which toy it was and remove it from the room. The empty box that had held an interactive tv game that facinated him so much he escaped from me three separate times to go back and stare at it some more as we were trying to leave. And this was all while I was "right on top of him" since I never let him out of my sight for more than a minute. Part of me was thinking that others might be surprised because I always am so on top of him and am able to cut off so many things before they even happen, and the other part of me was somewhat shocked at how many things he does even with me right there.

He is a great kid. Even without making much eye contact, A is one of the most social, friendly kids, almost always smiling (when his routine is still consistent and he's not scared) and singing. And I think his amazing personality and intelligence have allowed him to get this far before a diagnosis was made and with most people believing he is still perfectly fine. And I'm really glad he has all that going for him.

I know so many parents have it so much harder than me. I'm trying to look at the positive side of things. And I think I will feel much better when we meet for his IEP (July 13!) and get some strategies in place and start some therapies for him. But for now, having the official diagnosis and not much else, it's kind of hard to not focus on everything he does that supports Asperger's instead of just focusing on everything else about him.

And tomorrow is another day. What new adventures will we discover?


Heather said...

Aaron is a GREAT little guy - and with you for a mom - he will do so well!

And I still have to burn the Laurie Berkner CD for him! We have to have a pool day agin soon!

Sue G said...

Hi. I was disappointed to hear about Aaron's diagnosis but thrilled that he will be able to get some help. You are right he is still the special person that you know and love.
Best wishes

Linda T said...

Hi Rachel, good luck with the IEP. I hope you are able to get to DuPont, my cousin's little girl who is two was just seen by the female doctor down there. They live in Limerick, not sure of the school district, but she has different therapists coming in and out. Your children are very sweet and they have great parents. Talk to you soon. Good luck with the "addition" to the house.
Linda T