This piece ran in today’s Jewish Advocate. It is an edited version on the recent blog post “The Right To Struggle.”
A s I lay in bed last night, my remaining thoughts were about my autistic son Nat. I was thinking about his imminent graduation and wondering how he would feel once he learns of it. This subject has weighed heavily on my mind because the idea of revealing this news scares me. Traditionally, Nat becomes seriously anxious in the weeks leading up to a major event, and this one – no more school – is perhaps the biggest he’s ever faced. Or at least it is right up there with moving into the school residence.
Nat’s anticipation of many events has always set him off. Whether for a beloved vacation, like going to Cape Cod, or an unfamiliar new experience, like going to sleep-away camp, we have often seen an increase in his nervousness. His responses range from fast stomping around the house to repeating questions nonstop about the streetlights or other people’s breakfast choices to jumping up and down, screaming and biting his own arm. But I guess in some ways that is no less self-destructive than when I gorge on ice cream until I’m sick, during my periods of deep depression, or go to bed in the middle of the day, or blow off a hundred commitments to people.
Still, we have become very careful about how and when to bring up changes and transitions. I do not want to have to go back to times of fearing Nat – I used to refer to such times as being under siege. Nat’s aggressive and anxious periods used to keep us prisoners in our home, always fearing the next outburst. I remember my youngest, Ben, hiding under a table from Nat. I never want to see such fear in my children again; nor do I want a child of mine to feel so out-of-control, as Nat must feel during those times.
But just yesterday I was talking to M, a new friend, the mother of one of Nat’s (I hope) future roommates. “We’ve definitely seen some regression in J since we’ve told him he’s going to be moving out, an increase in some really challenging behaviors in J,” M said, and she described some of what she’d been seeing: shredded paper, self-stimulatory speech. I thought to myself, Yeah, Nat will do the very same thing, once we tell him. I have been figuring we would tell him after we have had a meeting with the entire transition team, on the 12th, when we will plan Nat’s final month of school. I have been waiting for the staff to tell me what they usually do and say to students when graduation is upon them. But lying in my dark bedroom, I thought of J and his many, many questions, and the stress that J’s family all must be feelng, simply because now J knows. And suddenly I thought: Doesn’t Nat deserve to know, too? Doesn’t he deserve to have time to get used to the idea? Even – and this is strange, but I feel it is important somehow – the right to get really anxious about it? I’ve been wanting to tell him about what I’ve been preparing for him: the day program, the roommates, the apartment – but no one has given me the go ahead. I’ve been waiting for A Sign.
However innocent and sweet Nat appears – and in fact is – he is also a man of 21 and very astute. For a person with limited language, he has compensated with becoming very sensitive to our nuanced voices, whispers, mood shifts and even the way we speak in code around him. We refer to Nat as “Eldest” when we need to discuss him in front of him. But somehow I don’t think he is fooled. Just the other day while we were all in the car together, I was starting to say something about his social group; but I did not even say the words “social group”; I wasn’t speaking to Nat, either. I merely said, “I wonder if those guys are going to the –” I didn’t even finish my thought. I was wondering if those social group guys were going to the Topsfield Fair. (Nat was not going with them; I felt afraid that he would wander from the group there. I would be sending him with a different group that had more experienced chaperones.)
Nat froze. Oh, boy, was he listening. He was listening with every fiber of his being, every neuron was reaching its tangled ganglia toward me, eking out meaning from the very molecules in the words coming out of my mouth. I saw him in the rear-view mirror, his wide, tilted blue eyes filled with questions, just like when he was a baby looking up at me from that back seat. (If you looked at the eyes and blond bangs, and blocked out the lower face with the beard stubble and man’s jaw, it was the same exact face.) And I saw that he was still so dependent on me for information; he hangs on what I say because I have introduced him to much of the world. Not only that, I am the one who figured out, so long ago, how to explain things to him to reduce his anxiety. As his mom, I had to major in Natology, and get an A every time, or he would be scared or sad. It has been my job to prevent that.
Or so I’ve thought. Last night I couldn’t sleep because I realized that no, it is not my job to prevent that. Protect him, yes; but my job is also to give him the skills and experience to protect himself. The whole reason you have school and then independence is so that your babies can eventually survive – on their own, to whatever degree possible. Because you won’t be there forever. But also because it is their right, their right to live an entire life. J was struggling, but he was learning and growing, and his mom was there to support and explain. But J was doing what he needed to do. Shouldn’t Nat have that same opportunity?
So I couldn’t stand it any longer. Today, driving him back to The House (the school residence), Ned and I were talking – in code – about the graduation and party. Suddenly I blurted, “You know, Nat, you will be leaving school soon. Right around your birthday.”
“Yes,” Nat said, snapping to attention, listening in that deeply neuro-aware way.
“So, in November, you won’t have school anymore. You’ll graduate. We’ll have a party. And you’ll come home to live.” I stopped there, because that was all I have for now. As soon as the home and roommates are completely certain, as soon as I have a building to show him, I will tell him about that move-out. For now, it was the leaving-school concept that I felt he had to hear about, at last.
“And Nat, we’ll talk about it a lot more, OK? So it’s not happening yet, but in November, OK?”
There was that face in the mirror again, so vulnerable, so young. But in a few moments, he went right back to his quiet self-talking. So darling, so innocent! And yet also, so ready.
Susan Senator is the author “The Autism Mom’s Survival Guide” and “Making Peace with Autism.” Her Web site is susansenator.com.