On the Friday before Easter, Kai and Ryan and I went for a playdate at the house of a classmate of Ryan's. The kids were going to dye Easter eggs. There was another family there, and I was apprehensive about how this would all be for Kai until I discovered that the children were all younger than he is, and therefore sitting on the couch playing Minecraft looked less anti-social and more coolly aloof.
When we called all the kids over to the table to begin dying the eggs, Kai surprised me.
“You know,” he said, addressing himself to the whole table. “I can talk.”
“I just don't talk very much.”
I wanted to hug him. None of the other kids paid him the slightest attention, wrapped up as they were dying eggs in a colorful tsunami of vinegar and overzealousness.
I've heard him say something similar before, that he can talk, he's just “slow,” which is absolutely the truth and absolutely heartbreaking—not just that he's delayed, but because he knows he's delayed, that his classmates leave him in the conversational dust, unable to get a word in edgewise because autism won't let him, and by the time he's formed the words the moment is gone, like all those times you thought of the perfect comeback to an insult you received yesterday.
I saw his Special Ed teacher not long afterward, when I picked him up early for occupational therapy, as I do every Tuesday, and told her that Kai would be out today and tomorrow for more evaluations.
“Hopefully, over the summer he can do something fun,” she said, “instead of all of this stuff.”
I couldn't help feel a stab of guilt. I think about this all the time, wondering if what we’re doing is too much. And also wondering if it’s even enough.
“We have something every day,” Kai observed, and it's true. We have speech on Monday, OT and social skills group on Tuesday, he participates in a mentoring group on Wednesdays that he likes but is also for special needs kids and so it's still a thing, we have vision therapy on Fridays. Kai's only day off is Thursday, though last Thursday we had a make-up speech session and three hours of psychological tests.
I've been toying with taking a break from therapy, but which one? The OT for his sensory processing? Speech so he says “teeth” instead of “teef?” Vision so he can read what his teacher writes on the blackboard? And who would this break really be for, anyway? Him?
And in any case, we don't do all of that because we want to. It’s not like I'm tiger-momming him into hours of violin lessons or grooming him for a spot with the Joffrey Ballet. I'd just like him to walk from one end of his classroom to the other without walking right into another second grader as though he didn't see her at all. Because he does that all the time. It’s hard to ask a girl to the prom if you don't know she's standing right there, you know? And you have to talk to her about something besides the number of rings around Saturn, because even if she's into that sort of thing, she'll once in a while want to talk about something else. And you can't honk her nose or violate her personal space or interrupt her or play Plants vs Zombies at dinner. Of course, that's all 10 years away and who knows if he'll even want to go to prom, but I'd like to give him a fighting chance at a normal, functional, independent life.
I tried to keep the defensiveness out of my voice, all the worry, all the temptation to say something snarky. She didn’t know she’d cut where it hurt. She didn’t even know she’d cut me at all.
“He’s going to summer camp,” I said, brightly.
And so I guess we keep going, at least while he still willingly gets in the car.