It’s autumn again, and parents everywhere have got their adorable progeny outfitted in the latest fashions, bedecked with brand-new school supplies, and situated to do writing that will reveal and indeed stimulate their remarkable growth and development.
Uh, unless they’re a parent of a severely autistic child like mine. As he begins second grade, no one, least of all me, is expecting Dar to finish the year writing his own name, much less writing something that would demonstrate growth or development.
Every year, the gap between Dar and his classmates gets wider. Kind of like the income gap between rich and poor Americans. Every year we ask: why is this continuing? Is this really the best way forward? Can something more be done? The question hasn’t become less urgent just because it has become more familiar.
So, what do we want? Progress on goals, sure. Oh, the IEP has goals. Some of last year’s were met. Some, not so much. We have a new IEP meeting this Tuesday. However, our school’s new Special Needs Coordinator has already taken me aside to ask me if we can schedule another one in October. I said yes. But it means we may not get a whole lot done at this one.
Our new person said that one problem has been the confusion…Dar had a February meeting, which would push the new IEP to February, but he normally meets every October, and it’s not yet October, so…I’m like, what? THEY insisted on the February meeting. I didn’t demand a meeting before October, I simply spoke to our person in August and, based on last year’s date of October 7, suggested that we meet in late September or early October. Confusion? It reminded me of that moment in Living in Oblivion (a movie you probably haven’t seen, but should), where the character meant to represent Brad Pitt, who has been suggesting change after change to their indie movie (within a movie), gets mad at the director because “there’s been so many changes!!”
The school year has begun with a lot more flux than we were hoping. Remember last year? Dar had three different “full-time” aides in three weeks from this third-party agency, each one worse than the last. The district finally course-corrected and hired a dedicated person, Erica. We loved Erica, even if she hadn’t been entirely trained on autism and ABA. At the end of the school year, Erica and I shared a warm hug that suggested to me that we wouldn’t see her again.
Indeed, we haven’t. But what’s even harder is that they don’t seem to be trying to hire another Erica. Instead, Dar has multiple aides throughout the day…which is, I’m being told for the first time, the new normal. I freaked out and marched to the principal, who has been presiding over our last three years of IEPs. She gave herself the telling wiggle room: “I know Dar has always had one 1-on-1 aide, but I’m not sure we ever said he had to.” I went back into the IEPs and it seems that it hadn’t been specified – only deeply implied, particularly during the flux of last year’s start when his team repeatedly said “we’ll find the right person.”
Dammit, it sounds like I’ve become exactly the autism parent that I once swore I’d never be. I read so many horror stories where people say “IF YOU CARE ABOUT IT, MAKE SURE YOU GET IT IN THE IEP,” and I always think, “duh, of course it’s in our IEP.” And now…kicking myself. But there may be a lesson in my failure to insist on this particular aspect of Dar’s program…maybe I really don’t care. Maybe I’m letting the new person convince me that “it’s better that he generalize his skills with a variety of people.” MAYBE.
I was prepared to begin the school year with a rather different idea for a step forward. I wanted the school to incorporate the PT-ing protocol which is going reasonably well at home. I was hoping to teach the protocol to the new Erica, whomever s/he happened to be.
But I’ve held off on teaching it to a rotation of aides. That feels less tenable. Sure, maybe it would work, but…hmm. And now I’m wondering if there’s going to be regression.
Now it would seem we may be postponing our IEP. Which might actually be good for us. I don’t have a lot to say…to be continued.