Susan Senator

About 13 years ago, we had a lot of trouble with Nat’s school placement. This is something I’ve written about many times, so I won’t bore you with a complete rehash. In a nutshell, the program stretched Nat too far; he fell apart, and channeled it all into fighting back at people, and none of us knew how to stop or help him. Despite all sorts of expert evaluations and recommendations, the school program refused to put in extra staff for him, opting instead to bar him from the school.

The only way I have ever described myself in that incident — that nightmarish time culminating in a team meeting that still makes me nauseated to think about — is as Mrs. Jumbo, when she struck out at all the other elephants and brought down the big top. Mad Elephant, the sign read outside her cage, and she was taken away from the circus — and Dumbo, her darling, beautiful blue-eyed, auricularly-challenged, misunderstood vulnerable baby.

As enraged as I have been over the years at this and other injustices regarding Nat (or my other two children), I must be honest and admit that I am also perversely proud and self-righteous about this image of myself. It is so rare in this life when we have the pleasure of being definitely in the right and the other side is so terribly wrong — this was a special needs collaborative, for God’s sake, kicking Nat out because of his special needs.

It probably was not so clear-cut a case as I perceived it to be then, or years later. The placement was not right for him, and this doesn’t have to mean that they felt Nat couldn’t handle it and they couldn’t handle him. It also meant that there were places he could learn better, without so much acrimony and effort. But I was so angry, and really scared, so I could not get to my most even-minded self. I sometimes wonder what would have happened if I’d been able to keep my cool and continue to negotiate — but who cares at this point? He’s 23, and he did go on to a better place.

I like to say that I learned from this episode not to overreact — it’s probably better in the long run not to take things so painfully personally, and to cut your losses. But did I learn that? Today this was put to the test. In my last blog post I wrote about how Nat was allowed during his day program — while on the job at the supermarket — to get soaking wet putting the carts away. Nat’s caregiver John and I were all incensed by this. How could the job coach have mishandled the situation to this degree, where he allowed Nat to go out into that cold wet winter weather without rain gear, or without his hood up?

John vowed to follow up, get Nat rain gear, have a meeting about this with the program, and really take care of it. “They have to understand that this is the disability,” John said. “They have to know he is compliant and so they have to take care of him because he will just do what he’s told.” I seethed and thought about switching Nat to another program, and basically chewed on my heart imagining docile Nat gamely going out to do his job.

But even as I talked about it, wrote about it, and fumed and worried about whether they were negligent, another image flashed through my head, of Ben coming home from the high school, soaked because he doesn’t have a raincoat or take an umbrella. I say, “Oh, Sweetie, you’re all wet” And dismisses me: “Not really,” even though his hair is dripping. And then other images, of Max walking miles and miles in the cold and the dark with friends, or alone, no hat, no gloves, just caught up in his life.

Still, I heard everyone fuming all around me about poor Nat, and that was where my head was. And then this morning, I drove him to his day program because he had slept over last night after Christmas in New Hampshire. We were early, so we sat in the car listening to music. I heard my thoughts going in a loop: I’m going to have to go in there and talk to them, how can I not? I’m going to have to get an explanation and have an ugly confrontation and be really strong and threaten to take him out of there and…

I thought about Mrs. Jumbo. I also thought about something Ned had said the other day, about how really the program has done a lot of good stuff with Nat, like believing in him for this job and helping him get so many hours. Keeping him active on the non-working days. Giving me glowing reports of his work. And I realized I was not worked up. I was going to do what I could. I was going to talk to them and show them that Nat is heavily monitored, by both his parents and his caregivers. In case somehow they missed that fact. I wasn’t looking forward to going in, but I knew I had to.

Nat and I went in a few minutes early and it was as if they were expecting me. I guess they saw me crossing the parking lot. The supervisor was very quiet, serious, chastened. Owned it right away. Newly-trained job coach. Miscommunications with the supermarket about rain gear being available there for the workers. Delay in telling the caregiver to bring Nat extra clothes. She apologized, and said she hoped he hadn’t gotten sick from it. And then it was over. We shook hands, and I left.

Driving home I thought again about Ben always walking home in whatever weather, just to be able to be with his girlfriend and not dependent on his mom. And I found myself thinking radically:

Why is it so much worse that it was Nat who got wet on the job? When I’m never this up in arms about Max and Ben getting wet and cold during their days?

Does it matter, a kid, or a young man, getting soaked from time to time? It does, but — it is not the end of the world. It’s not great, but it’s not a felony, either. We can prevent it next time, without bringing down the house and salting the earth.  Yes, Nat has a profound disability that manifests itself in great passiveness and compliance — ironically, 180° opposite from the behavior that got him expelled from that special needs program 13 years ago.  And I think we all feel so much worse when this sort of thing happens to Nat because — why? Because my other sons know what they’re doing? We worry that Nat was suffering, that he was dumbly doing what he was told, poor Nat, poor victim Nat, soaked and disabled. Baby Mine, little elephant with no one looking out for him. How sad that makes us.

Because he has a disability, we kind of unconsciously see him as innocent, childlike. And yes, he is more vulnerable than Max or Ben; that is why he must be supervised his entire life. But they are vulnerable too, in their own ways, being out in the world the way they are. And yet I’m letting them go.

So shouldn’t I also let Nat go to every degree I can, because he is a MAN and he is making his way out there, too? He needs supervision, but not like he used to. He has parking lot safety down now. Street smarts, to a pretty impressive degree. The ability to live away from us, and work a regular job, with no incidents for more than a year.  The same guy who was kicked out of school at 10 for acting out aggressively.

If you think about this another way, without knowing Nat has a disability, he’s just a guy who may have been annoyed by working in the cold rain, uncomfortable, but who in the end shrugged and got used to it. You’d kind of admire that guy, rather than pity him. After all, for Nat, the important thing — the thing that makes him feel life is worth living, is to do what he is supposed to do. To get the job done. I don’t have to cry and rage at the uncaring world and Nat’s dependence because of autism. Because actually it is precisely his disability — the extreme focus that autism often brings — that makes him such a dedicated worker, someone who will even go get the carts in the freezing rain.