Sunday, June 18, 2006

So, what's it REALLY like in Holland?

Yesterday we got the results of A's evaluation. And it turns out that I nailed it: A officially has Asperger's Syndrome. We meet in July to create his IEP (Individualized Education Plan).

It's funny. I really wanted him to get this diagnosis. We've known something was wrong from early on. At 18 months we had his hearing tested to see if there was a medical reason that he would ignore us so often. Nope, it was fine, he was just ignoring us. He used to decorate his crib with the contents of his diaper. Gross, I know. When I started researching Asperger's and Sensory Integration Disorder, the idea of "seeking" sensory stimulation really jumped out at me, especially with regards to tactile stimulation. It explains a lot. But, cleaning his crib 5+ times a month for about two years, I just was mad. And frustrated. And confused. I remember another mom at a playgroup at my house a couple years ago commenting on how her son had once done something like that. She went on to say that it wasn't like he was doing that all the time, or smearing in on the walls, because that would be the sign of a truely disturbed child. I laughingly explained to her that A has been doing this for a while, that we keep figuring out ways to keep him out of his diaper (put a onesie on under his pajamas, put him in a one piece zippered pajama, pin the pajamas shut) and he kept figuring out ways to get into it. She apologized profusely like she had made the biggest faux pax in the world. She was so embarrassed. And yet, here we are.

I'm happy about the diagnosis. Really, I am. This is what we needed so A could get the services he needs. And the more services and therapies he gets now might mean the less he'll need as he gets older. But the emotional, non-rational side of me has wanted them to tell me yes, he has some issues, but it's not as bad as you thought, so we'll work on them a little bit and then he'll be just fine.

Like I said, I know that was not rational, but in the back of my mind I guess I was kind of holding out hope that I was exagerating the whole situation. Everyone that I have mentioned my suspected diagnosis to (except his teacher and his doctor) has been shocked. "A?!!" they always say, "Really?!!" And that's because my A is one of the most social, outgoing kids you'll ever meet. And he loves talking to grown-ups. He loves going up to them and introducing himself: "Hi, my name is A." Most adults are so blown away with this they don't really pay attention to the fact that he's not really making eye contact with them. And when he goes on to introduce everyone else he knows ("That's my brother, B, and my sister, J, and my cousin, DN-A, and my other cousin, Baby DN-J.") most people just think it's cute that he then shares his address and phone number, not really catching on that A - He's still not making any eye contact, B - He's talking to a total stranger, and C - Should he really be sharing all of this personal info with someone he doesn't know?! And while A is like this with adults who think this is cute, kids kind of look at him strange when he starts talking like this.

He made his first "friend" last Saturday at a Mother's and More BBQ. DH and I were so excited as he brought his friend over to let us meet him. I tried sharing with a couple moms there what an incredible milestone this was, but I don't think they really got it. B is the one that can just start playing and talking with other kids at the park and then play with them for a while. A tries to do this but just never has gotten the hang of it. One of the areas that was mentioned a few times on the eval was the whole social thing, so I know that is something we'll be putting in his IEP to help him learn.

I guess I need to get over my "shock" that I had hit the nail on the head with my diagnosis. I had kind of been hoping that I was wrong, that I was exaggerating the problems in my head so I could get lots of help for him. But I wasn't. And I know I wasn't. And it's now been confirmed that I wasn't. And that's just the way it is. He's still the same loveable kid, the one who loves to read, the one who loves computers and all electronics (well, he's obsessed with them, but he still loves them!), the one who will perform any song at the drop of the hat, my surprising first born. He just now officially has Asperger's.

And I now join a club that I never really thought I'd be a part of. I had read the "Holland story" before (comparing the experience of parenting a child with special needs to taking a trip to Italy and ending up in Holland - there's lots of great things about Holland, you just weren't planning to go there) and had kind of thought that being the parent of twins was kind of like that. I just never thought that I would be able to relate to the story the way it was really intended.


Anjali said...

Rachel, I'm so glad that you got the diagnose you wanted, and that Aaron will get the treatment he needs. What a great mom you are, to take your instincts seriously and pursue them until getting results.

Lucy T said...

See if this makes sense . . . decades ago I worked in an Accounting Dept. We had to balance the books each month. I remember being off,say $100 over,and finding an error. Correcting that put me out in the different direction, say $60 under. I felt like I was then in worse shape . My boss showed me that I was actually one step closer to completion because now there was one less thing to be fixed. Now you have a diagnosis from someone who can create a plan of action. You are one step closer to where you want to be. Aaron is a cutie patootie. The world knows with one look at him. The last time we were together, he composed songs about topics of my choosing and sang them to me. That's pretty cool.

Jennifer said...

You know maybe we should think about an ACTUAL trip to Holland one of these days, for all of us that have been living there. :)

M-j said...

YOu know I TOTALLY understand where you are coming from! So don't EVER hesitate to call, ask questions, e-mail, etc. You know I have been navigating this for some time.
As for Holland, I am sick of it, but know I have to stay. May as well make the best of it, right?

Mom Nancy said...

I'd never heard that Holland story, but I'm glad you finally got confirmation of what you've already known. Now you can proceed to get him what he needs. I'll keep you and Aaron, heck the whole family, in my prayers. Remember, celebrate the small victories!

MomOf3 said...

Aaron is a lucky little boy to have a mommy advocate like you!