The Boy in Restraints

We discussed, Len and I, whether to send Noah to the JCC's respite program. After all, he's not a problem at home. We don't need relief from him. Then again, unless we have set plans, he's likely to spend a weekend day parked in front of the computer, or watching videos. And that doesn't seem okay to me.

Noah's entitled to relax after a week of school, but I worry that his weekends in front of a screen are a foretelling of his future weekends as an adult. So I try to find things to break that pattern. We do a lot outside of the house, but every weekend day is beyond us, as we need downtime too, and have the other kids to be with as well.

It was in the spirit of getting Noah out of the house for a few hours, where he could be occupied by other people, and possibly engage in some fun activities, that I signed him up for the respite program. The timing was also perfect, as his sister would be there for a play rehearsal and I could pick both of them up at the same time.

I wound up staying the first Sunday, not sure how Ariel was settling into her program. I walked around the building a couple of times, peaking into various rooms, in the hope of finding Noah's group. No luck the first two times. But on my third try, I saw Noah in one of the bigger rooms, at the far side. He caught my eye and smiled. We waved at each other. I tried to see what the boys--they were all boys--were doing. It looked like one of the staff had projected something from a videotape or a computer onto a screen. I thought perhaps the kids were playing a game based on the projection, but they were all sitting passively. No remotes or clickers of any sort in hand.

Noah seemed content, so I waved again and walked back to the lobby. Closer to 4p.m., when Ariel would be dismissed, I went back to the room to get Noah. I looked in, and he was in the same spot, at the far side of the room. He saw me and smiled. Then something to my left caught my eye. It was two large-ish men holding a younger boy by the arms and across the chest. The men looked stern. The boy looked...frightened? perplexed? lost? It was hard to tell. I didn't hear anything. There was no screaming. It was as if I'd caught a moment frozen in time. The boy in restraints. And everyone else.

A staff member came over to ask me if was there to pick up my child. "Yes," I said. "He's Noah." Then the program director came over and okd the early pick-up and excused herself, telling me that there's a "situation." "Oh is that what they call it," I thought.

Noah came out and we walked toward the lobby together. "Did you like the program today?" I asked. "Yes" came Noah's reply. "Do you want to go back?" "No" was his answer. But Noah often says he likes things and doesn't want to return. There's not much I can glean from those answers. The bigger question is do I want him to go back?

I think the staff are kind and caring. I'm glad they can gain control when they need to, even though it hurts to see a boy restrained. And I'm not proud to say that a willingness to restrain someone who's acting out in threatening ways is important to me, since my child cannot defend himself against someone who behaves that way, should he god forbid be a target, or just be standing in the wrong place at the wrong time.

Still, is this the right place for Noah? Is this better than having him at home, searching YouTube for his favorite Sesame Street or Barney videos? What does he learn from being at the JCC with mostly older boys and young men, some of whom look like they might have been candidates for institutionalization years back? Does he learn conversational skills? Social skills? No, but there's no false advertising here. This is respite. A break for the parents. But it's not a break from Noah I need. It's to accept that he doesn't have a ready place to go outside our home that suits him. He's not a burden we need to unload, but he's also too impaired to be with the kids who "just" have speech delays, ADHD or mild cognitive impairments.

Noah's the boy who fits in the cracks between the horrifically impaired and the just-so impaired. When I saw him across the room, I had a mental flash that I was viewing him in a kind of ICU. I was outside looking in, and he was waving to me, letting me know he was there and he was happy to see me. Then I walked away. I left him in the ICU. And when I returned, it looked like a holding cell. And Noah was still happy to see me.

NEXT TO NORMAL

For anyone who's ever loved someone and lost someone--actually, or (just) emotionally. For anyone who's ever wrestled with his own demons, or with anyone else's. For anyone who's struggled with the impossibility of reaching inside another person's soul to save him. For anyone who knows deep down that happiness is a flawed and elusive thing. This show will speak to you. You will laugh. You might well cry. And you will be grateful beyond words if you have a Henry to call your own...

To Be or Not to Be: A Boy?

It's been a long time since I've written. I think about writing a lot, but it seems the thoughts just swirl around in my head, instead. Like recently, when Noah approached a beautiful blond classmate (he seems to have a special thing for blondes) and told her, animatedly, "I'm so happy to see you." As he said it, he walked over and gave her a hug (very appropriately). And next came, "Can I wear your dress?"

Sometimes, I do wonder if Noah suffers from some kind of gender confusion. He often asks if he's pretty. When he was younger, he often asked to wear tutus (and borrowed cousin Sara's when we visited). He's talked pretty regularly about being a princess or a ballerina. The challenge here is that I can't really talk to Noah about this the way I might talk to a non-disabled child. After all, how do I even explain notions of gender and gender roles to a child who doesn't understand abstractions?

Do I think Noah could be wondering about his own sexuality? Not really sure. All kinds of things happen during puberty. I just know that I don't know how to help him understand the mental and physical urgings he might have/be having. Just one more thing to add to the endless list of things Noah needs help understanding. And just one more thing I'm ill-equipped to help him with.

Sometimes, this stuff is just funny. After all, what can you say to a child who announces to you, "My penis is hot" other than, "Honey, you tackle that one; it's not my department." At those moments, you just have to appreciate the honesty of a child who doesn't know to hide his feelings or his confusion. There's something really beautiful about that, especially when you think how much of our kids' sexuality is treated as taboo, as scary, as a tap to be turned off. Noah just is. He sees a beautiful girl and he tells her how happy he is to see her. He gives her a hug. And he wants her dress. He doesn't want to un dress. It's refreshing somehow. It's certainly non-threatening, which must be a blessing to girls who feel a little at sea in middle school's giant tub of testosterone.