My son is autistic. Sometimes I say it out loud, sometimes in my head. I don’t know what it means, except that he is probably my favorite human being. On the planet. (G, if you read this some day, please know, I will have already said this about you on various occasions.)
I say it because it matters, just as much as it doesn’t. I remind myself, especially in times of frustration, because keeping him in mind as more than a miniature version of myself or some imaginary (as in, not real) kid that I mistakenly wish him to be is fundamental. And I’m thinking about it because it’s IEP time and adjustments need be made.
We have a great team working with Jonah. His teacher, intervention assistant, OT and speech therapists (not to mention his team of peers, which are just as/if not more important in Montessori education)—well, their concern and care for him approaches love in many cases. Going into his IEP next week, his goals and objectives have already been turned and are being compiled by the representative for our school district. Considering the singular pain we went through to get the first one written (imagine eleven people in a room attempting to write a series of goals for a child half of them hadn’t even met, imagine the new language we were trying to absorb and adapt to—terminology like proprioceptive, vestibular, comorbidity, least restrictive environment, accommodations, ESY, IDEA, and ETR—all the while thinking, “Are they really talking about our Jonah? Surely they can’t be…”), it just seems too easy. I start to consider if we’re not doing enough here.
There are other concerns. Like money. Always money. We accepted Ohio’s Autism Scholarship, making Jonah’s education and therapy entirely our responsibility (rather than the state’s). Even with additional medical coverage, we can’t cover his tuition and the therapy hours we fought so hard to get into his IEP.
We also fight for art. Considering we’re at a school where that’s already emphasized, I’m sure his therapy team thinks we’re a little nuts (especially John—his passion on the matter is palpable). Something happens when Jonah “makes” (that’s what he calls art—as in, “My favorite thing is making”). He’s working something out. Expressing himself in a way that doesn’t always come easy with words. He can go away, work fast, move through one creation to another.
All we’re technically responsible for in the IEP is something called the “Future Planning Statement.” Basically, it’s just a few sentences saying what’s most important to us for Jonah, until Jonah can say what’s most important for Jonah. It’s nothing poetic, but it gets at the heart of our hope for him. What we believe will lead him forward into the big bright scary complicated world:
We desire that Jonah continue to develop his literacy skills through reading and writing and have structures established to assist him in furthering his interest in art. We want Jonah to progress in reciprocal relationships with peers, particularly in the navigation of multiple friendships and self-advocacy without excessive anxiety. Additionally, we would like him to improve in the management of his sensory and emotional needs so that he can participate fully in his classroom, home and community.
That “navigation of multiple friendships and self-advocacy without excessive anxiety” bit is a new labor for J. He has several friends in his small class, and it can cause him much anxiety responding to their multiple invitations to play. One peer, in particular, is several years older and can manage to get Jonah to do just about whatever he says or asks. As Jonah put it to me on a walk to school: “I’m not so good with [student’s name] so much.” Jonah inherently wants to please. It causes him great distress when someone is angry or irritated; he tends to conclude that other people’s emotions are his fault. With me he will repeat “I love you mom, I love you mom, I love you mom” until I respond in kind. If I don’t, he asks, “Did I do something wrong?”
So when a friend tells him to stop eating his lunch (J’s a very slow eater) so he can play, J stops eating his lunch in order to toss the football. One day he subsisted on fruit and goldfish and was a grouch by the time we got home. Yet even when friends politely ask, “Jonah, would you like to play princesses with us” (he’s in a predominately female class), he finds it incredibly difficult to say “No thanks.” “Yeah, uh, sure I’ll play princesses” is more likely to be his response. It’s hard saying no to your friends, especially when actually playing with them is just starting to make sense and be fun.
But this is a good problem to have, as I see it. In fact, it makes me almost as glad as a boy in Harry Potter face paint.