Friday, May 09, 2008

Yea! She's Disabled!

It's a bittersweet triumph for a parent of an autistic child. "Your child has been approved." "Your child has been diagnosed." "Your child has been accepted." "Your child IS on the spectrum."

Our latest 'affirmation' was through our state's DDD, confirming Grace was indeed eligible for services. YEA! more money for the coffers, more availability for services in the future. It's indeed a good thing. But, there's always that voice in the back of your head hoping that they'll say "I'm sorry, but you daughter does not appear to be on the spectrum, she's a little quirky, but we don't feel she's going to need any services, especially in the future." So, after we say "YESSS, she's disabled" we think "Did I just say that?"

In our journey, we've always known well before the experts confirmed it, so we were never surprised with the news. Liv, we had seen the signs around 18 months; Linda did research on the internet, she had me and my mother in law in denial for a couple of weeks before we realized Linda wasn't just matching symptoms to disorder. By the time we had the proclamation from the pediatric neurologist a few month later, it was anti-climatic and more a rubber stamp to our conclusions. We always had that hope (maybe hope is not the right work, maybe it's outrageous fantasy) that he'd say "No, your grossly mistaken, she's just going through a non-talking, stimming, anti-social, no eye contact phase, she'll grow out of it." (Wow that sounds like a couple of pediatricians we saw!)

Grace was at around 13 months...we weren't sure she had enough symptoms to warrant a diagnosis. We weren't sure because we hadn't seen another kid develop in almost 4 years; we had autism on the brain, so we weren't positive we could trust our judgement. We were sure, but we weren't sure we were sure. She was one of those kids that could have easily been missed by the lay doctor; but with a trained eye, we showed the early intervention folks exactly what we saw and they confirmed that they saw the issues too.

But because Grace's skills are so great and her autistic tendencies more subtle, she's been a fight with the people with lots of skepticism and funding. Her school system finally gave in a few months ago and we're moving her to an autistic program starting in the summer. DDD had to have an in-person evaluation to see for themselves. She 'performed' as well as we could hope. She's always a little nervous in new situations, and she'll show it by trying to eat inappropriate things (she tried to eat a tack and a paper clip), try to get out of the room (he had to barricade the doors) and generally make a lot of ruckus. The 'poop' in her pants was ('scuse the bad visual) icing on the cake. Where else would you think to yourself "Thank GOD, she acted up and was completely out of control in a state office!"

She's not nearly that bad at home though. It's an interesting dichotomy: The fantasy of trying to get her to perform poorly and the reality of better behavior at home, vs the typical version where the fantasy is them being perfect in office and digressing at home. I've long since given up on making sense of my life though; way past dreaming of my girls as something they are not and far away from lamenting the things that go along with. I'm just glad our kids are getting what they need...


Maddy said...

I try and concentrate on the 'ticket to services' but it's tough.
Best wishes

VAB said...

Yeah, I know that feeling.

You know what our pediatrician said? He said that if we don't like how it's working out down the line, we can always reverse it. True enough.


It was a little more melancholy for my wife. The comments talking about this being 'for the rest of her life' from the case worker got to her. We keep thinking youve adjusted and thins like this come up and remind you.

I remember when we first started thinkin "A year or two of ABA and we'll be back on the road to normalcy. I figured I droppped that notion by the roadside sometime after Liv 'graduated' from Early Intervention....