When we were first getting Benji evaluated–way back before Autism was even in my vocabulary ( “but he makes EYE contact!”) I remember telling the speech therapists in my naive way that it was like there was some magic button in Benji that just needed to be pushed. If we could just push that button, I believed, he would blossom and emerge.
We are four (FOUR?) years removed from that day, and I’ve since learned, as that therapist so delicately tried to explain to me, that there is no magic button that will undo who my child is. Nor do I long for that button anymore. He has autism. He will not “grow out of it” as some medical professionals (YES, THOSE KIND) suggested, nor will ever stop being autistic. He might–MIGHT–learn to function in a way that makes people not believe he is autistic, but that really isn’t our goal here. Sure, he needs to learn to, I don’t know, hold a job of some sort and take care of himself, but even with those skills, he’ll still be autistic. And I’m ok with that. I’ve had four (seriously, I can’t believe it’s only been 4) years to really grow into this role of autism mom/advocate. I get that his neurology makes him the perfect lil snowflake. And I celebrate it. Yes, even when he wakes me up at 6am on a Saturday just to tell me the date and what ever plans we have that day.
There are those that will always see his limitations–that see the label of Autism and think “oh” and put him in a box in their mind. Some of those people are strangers, so I don’t care what box they put him in, since I put them in boxes all the time too–like “nosy bank teller”. Some of them, however, are NOT strangers. And as much as I’d like to shake them like a Polaroid picture, I just try to advocate, and make sure their box doesn’t limit who he can and wants to be. That’s my job. Some days I kick ASS, and some days? meh. I live in the hopes that those days even each other out.
ANYWHIZZLE, I’ve been noticing a few things this summer. At team meetings, as we discuss strategies for working on behaviors, we’ve been letting things go, because the things we are talking about are very “typical”. Now, I’m not talking about his perseveration on asking the same question over and over ad nauseam until I think I am gonna holler, or his rigid obsession with everything calendar/time lately. No, I’m talking about how he’ll just give up easily claiming something is just. too. hard, or how he tries to wheedle out of things using his charm, how he refuses to try anything that looks REMOTELY like a vegetable, or the crocodile tears that come from getting caught doing something naughty.
You know, the kind of things most 6-year-olds are doing.
This summer he is learning to ride a bike for the first time, going to the movies and taking a regular, no accommodations run-of-the-mill gymnastics class. And he’s succeeding. Maybe not in the way he is EXPECTED to succeed, but he practices his handstands every day. EVERY. DAY. And he may sit in the movie theater with noise cancelling headphones on, but he sits through the movie, with very few disruptions. And he is tearing UP the asphalt with that bike. Yeah–that kick ass bike RIGHT THERE.
In fact his ABA supervisor the other day said “I’m excited for him. I mean, he’s doing things boys just DO.”
And while I know that that button I so desperately clung to in the early days doesn’t exist, I do know that he has worked hard–HARD–for four years. We have had–and still HAVE–all sorts of therapies, and teams, and team meetings and strategies, and accommodations that have gotten us to this summer. No button may have been pushed, but gears have been ground, and levers pulled and latches unlatched and circuits built to get to this epic summer of epicness.
My kid still has autism. You put him in a crowd of his typical peers, and it isn’t even in question. A big green pea in a bowl of rice. But this is the summer of chances. Maybe it’s the times, or the autism publicity, or the dimply like look of charm he gives everyone, but boxes are being discarded and he’s really being given a chance. And he’s living a summer like any other kid on summer vacay. well, any kid who keeps close track of the calendar, anyway. With each activity, he grows a little. With each chance, he emerges even more.
With each day, the need for that button disintegrates. We’ve still got plenty of gears and levers and circuits to work on. That should keep us busy for the next fours years at least. By then he’ll be 10, (cue hyperventilation) and we’ll have a new set of challenges ahead of us. But until then, I think we’ll enjoy epic bike rides and frenetic swims and trying 25x a day to do a handstand. Likes boys (and girls) do. Right after we write today’s date on the schedule.