When E was diagnosed on the spectrum two years ago, almost to the day, I immediately requested an IEP evaluation through school. He was in second grade at the time, academically successful, high functioning, and nothing more than a challenge in the classroom. New to the diagnosis, still a bit shell-shocked, I backed down when the team wasn’t too keen on completing the evaluation. I didn’t push when the promised 504 meeting didn’t happen a few months later. Maybe this thing wouldn’t be that big. Maybe if we just talked to his teacher at the beginning of every school year, we would be okay.
As time passed, I realized I needed to look big picture for him. His deficiencies would become more and more apparent as his peers matured. I couldn’t just think about second or even third grade. I had to see beyond to fourth, fifth, middle school, high school. That meant pushing. So last year, one year post-diagnosis, I re-requested the IEP evaluation. Given the same answer again (he’s academically successful and not a disruption in the classroom), I refused to back down. We compromised and got an evaluation on speech and language. Sixty days later, we had his first IEP with goals in place. Relieved, I still couldn’t help but feel I’d missed something. But he was successful the remainder of the year. And we carried on. Status quo.
Fourth grade…the dreaded fourth grade. I knew what was coming. In fourth grade, a lot is thrown at the kids quickly. It has to be. And kids start to become much more socially aware. E’s wheels came completely off. As in, I couldn’t drop him off in the morning and expect to not get a phone call. He cried, I cried, I’m fairly sure his teacher cried. It’s been a very rough road. But in a way I’m thankful. Everyone saw what I’d been sure was coming. And now he is getting the full balance of the IEP evaluation.
I received a packet from the school psych yesterday full of forms I need to complete. Behavior assessments, his personal history, emotional disturbance, and Asperger diagnostics. I’m sitting here looking at all of this, overwhelmed. I know I need to fill them out. These forms, with their circled numbers, filled-in dots….those represent my child. But they are not him. They are a means to an end. They’re terrifying. I had to pull out his baby book and baby journal to find some of the answers. Looking back on his babyhood….I wrote over and over how happy I was, what a happy baby he was, what a joy he was to have. Looking at those words with the lenses of his diagnosis – I found myself hunting for clues. Truly, there weren’t any indicators. He was ahead of the game across the board…rolled over early, crawled early, walked early; babbled on time, held his own cup early, interacted as expected, laughed hysterically when his brother and sister blew raspberries at him. I wondered how we got from there to here. Dang forms for making me see where we were as opposed to where we are.
My new worry – the one keeping me up in the middle of the night – is that with his medications adjusted, he seems to have settled down. He is in class more. He’s not nearly as disruptive or oppositional. How is that going to play out in the evaluation process? I love our school. I love our teachers and staff. I trust them. I have to. I know he has a ton of cheerleaders and we both have a lot of support there. And yet I’m still anxious about this process. I can’t back down this time. I won’t back down this time. I’m halfway through these forms. I did not cry. I can’t afford to be emotional right now. We must get through this for him. And that means putting my emotions aside and powering through. This isn’t just for right now. This is for what’s coming too.