[Scene: ISAAC is at home with ANA, his nanny. She is trying to get him to eat his carrots.]
ANA: Isaac, papi, have a carrot!
ANA: Isaac, come on these carrots are so good! [Eats one]. Mmmmmm!
ISAAC: Ana likes the carrots, Ana can eat the carrots.
And here we are. He walks into assembly at school now, completely untroubled. Months ago, he refused to go near the place with its linoleum floors, bright lights and deafening clamor. The anxiety is still there, as is the elevator obsession, joined by a new companion: buses.
These days, I awake as often as not to a recitation of our municipal bus lines. It's part of the deal, our special interest, if you will. It doesn't faze me too much--I remember my grand passion for escalators at that age--but then the world has a way of intruding into our snug little cocoon.
The world loves norms, doesn't it?
When my mother died, a part of me watched with detachment as I moved through the stages of grief--frequently all at once. But one thing people don't tell you is that your friends and acquaintances move through those stages with you as well. They have a timeline too.
They begin with shock, as we the bereaved do. Then kindness (sometimes distancing). Food is brought, hugs given, long weepy monologues patiently listened to. Assurances--"whatever you need..." are made. But then, at some predetermined yet mysterious moment, there is a shift.
You are supposed to be better. You are supposed to be back to normal. Because--let's face it--we humans are made profoundly uncomfortable by variations from the norm.
But the truth is that the bereaved accommodate as well. We try to pass. We pretend to feel better. We pretend to be back to normal. We simmer with anger. Or we express that anger.
Because then we have two things to battle: the grief, and the illusion that the grief is gone.
And this is where we are, in a way. As my boy matures, behavior that was passed off lightly at two or even four is now so much more evident. When he is overcome at school and lies on the classroom floor, or when he refuses to exit the elevator, demanding yet another ride, the climate shifts, and everyone has to accommodate themselves to this departure from the expected.
They want him to be normal, because, you know, it's so much easier.
But here's what I've learned. My normal has stretched to accommodate a lot more than it used to. And with that comes a certain serenity about what is happening at any given time.
So here is my advocacy project, my challenge to you and to the people around you. If you really want to make a difference in my son's life and the lives of people like him, challenge that unease you feel. Provoke it. Stretch your normal.
Back when Isaac was about two and we were investigating additional interventions for him, I spoke to the representative of a local autism services organization. She stressed to me how important it was that I get Isaac into this particular type of program because, she explained, a child's neural plasticity is greatest before the age of three. So it was, in effect, a race against time, and every second wasted was a second in which Isaac's future would be forever limited. So we might want to sign up right this minute.
I hated that conversation: the implication that we weren't doing enough already (speech and OT), that this was the right program for a child she hadn't even seen. But most upsetting was this idea that at a particular point not long in the future, everything would be "cooked" and we had only a small window left to affect the course of our son's life. Tick, tick, tick.
Of course it was horseshit.
Kindergarten has been a hard adjustment. Aside from the question of support (not nearly enough, and about which I hope to have an update soon), the sensory environment is completely overwhelming for Isaac. Twenty kids in the class, about 400 at the school, a huge playground, intercom announcements, assemblies, a loud, echoey cafeteria, and, worst of all, recess. In a word, school. Very much like my old elementary achool, when it comes right down to it, but a completely different experience for him.
He comes home exhausted, hyper, crabby. He has far more frequent tantrums, and they're longer and more intense. The pattern, for the past few weeks, has been like this: by Friday he's not doing much work at all, Saturday is a nightmare, and by Sunday morning he's happy again and goofing around the house. He cries Monday mornings, Tuesdays through Thursdays are a little better, and then by Friday he's completely spent. Do we have twelve years of this to look forward to?
Yesterday was rough. He had a couple of really long tantrums, one of which was prompted by the fact that I refused to let him watch Thomas the Tank Engine in the room in which his father happened to be sleeping. I said he could watch it in the front instead. "I want to watch Thomas in the baaaaack!" he yelled, and that was pretty much it for the next 45 minutes.
I tried to explain how Daddy felt: that he was sleepy, that he needed to rest. But I couldn't get through, and couldn't figure out whether it was because he didn't conceive of the idea that his father has feelings, or that he knew and understood, but didn't care.
Which is worse?
Maybe there's a third option: that he knew, but was too upset and emotionally drained to behave accordingly. That's a variant of the latter, I guess, and I think it's right. Once he started to calm down, I asked him why I had told him he couldn't watch TV in the bedroom. "Because Daddy wanted to sleep." He knew.
And so when J. and I are on the sofa at night watching movies but really thinking about him, we nearly always conclude with the reassurance that, after all, he's only five. It's our fine print. It's our "out clause."
He's just a little kid, we remind ourselves. This is just a phase. He keeps growing and changing all the time.
But one day soon he won't be little anymore. He's already bigger, stronger. More is expected of him: he has homework, for heaven's sake. So will we get to a point where that out clause is just an artifact of an earlier, more innocent time? Do we have to prepare to give it up one day? Or is that a betrayal of his potential?
What is the right balance between faith and acceptance?