This is the time of year when we focus on gift-giving. I try to remember all the kids’ teachers, even though Brookline schools has a policy against giving gifts to teachers, there’s always some way, like cards, or baking, to say thanks. But there’s often someone important I forget, especially in my oldest son’s case. Nat goes to a private program for children with autism, so rather than just one or two teachers in the classroom, there are five specialists in his class of eight, and rapid staff turnover, due to the intensity of the job. Because of this I don’t always get to know everyone in Nat’s life. But it feels especially remiss not to acknowledge all the people who work with him, particularly now, when he is 17 and there is so much left to do for him to prepare him for the world.
It seems like ever since the beginning of Nat’s life I have been focused on how hard things are for him. Even when he was little I was thinking about his future, and I have needed to rely on others: teachers, doctors, therapists, and tutors to help teach him the many things he needs to know.
Most parents worry about their children, of course, but back when Nat was diagnosed with severe autism — so many years ago — we felt completely alone. We didn’t know of anyone else like him. Now things are different, but back then, all I knew was that my husband and I were alone with a baby we loved but didn’t understand, and we were scared. Questions and doubts colored every conversation we had: What should we be doing for him? Who will help us? And the most horrible question, the one that still makes my heart hurt: What happens when we’re gone?
I have learned to live with such uncertainty by now; it’s just a small line between my eyebrows, a soft twinge in my throat. We understand that we cannot plan for every eventuality, even though we are teaching Nat what to do in any emergency situation we can dream up and recreate, safely. We can teach him to put a band-aid on a cut, but how do we teach him how to know when he needs stitches? Those kinds of gray areas are hard to teach, yet they make up the fabric of daily living in a complex world We will probably always need to have help for him. I am only just beginning to accept this.
Yet I don’t always accept it. I make jokes like, “Well, I just won’t ever die,” while I continue to cultivate my relationships with the staff at his school, keeping my eyes open for those special teachers, those aides who go above and beyond, who really “get” him. I am secretly looking for my future respite workers, for the people who will help us when he’s an adult. There’s the music teacher who is determined to teach him real music theory; the gym teacher who gets beaned with willfully thrown balls, yet proudly calls him Adam Vinatieri; the swim coaches who get pinched but cheer him on when he races. And of course, the bus drivers. With little or no training in autism, they get to know his quirks, his likes and dislikes, his radio station preferences. They talk to him and keep him happy for an hour and a half every day. Maybe it’s not as much as teaching him how to count change, but sometimes I wonder.
The other day, because it’s close to Christmas, Nat’s driver handed us a big bag of presents: a huge box of Oreos and a polar fleece top to keep him warm. “He always asks for cookies because I give them to him sometimes,” she shrugged. “So I want to make sure he gets his cookies.”
The old twinge in my throat flared up. I almost cried as I took that bag from her. This gift was much more than a bag of cookies. What she gave me was a little peace of mind. I still don’t know what the future holds for Nat as an adult. But I’m pretty sure that there will always be people out there who will care for and love him, even when it’s not part of their job description. Even when it’s not easy. And even when I’m no longer around.
Copyright 2006, Susan Senator