It is true — I hope it is true — that most parents work hard to get their children what they need. But do we sometimes shoot ourselves in the foot with our high standards? I’ve wondered about this for a long time. Back when Nat was still in school and I was a co-chair of the SEPAC (Special Education Parents Advisory Council), I heard a lot from parents about how the supports just weren’t “good enough.” Their child was not progressing the way they thought he should. All the parents nod, understanding, because we, too have often felt that the schools were strapped by the budget and so they could not provide enough of a given service: (ABA in the home, one-to-one with a classroom aide, a particular curriculum, etc.) Because of this mediocre reality, our special needs kids do not evolve to their fullest potential and we wring our hands about it. Rightly so, because we love them and we are their best advocates.
But — we also learn at some point that nothing is perfect, and that we have to negotiate, prioritize, and compromise. In Nat’s case, our school system was generous enough to send him to a very good private ABA school, and I never had to fight for that. But there were several things wrong with this: First, the private school could be very rigid and not always able to do just what he needed, but rather, they would follow their behaviorist dogma instead. Or they were too risk-averse to try something new that I just knew he could do. And finally, I live in a town with an excellent school system and a beautiful neighborhood school where both my younger sons went, and I wanted Nat included. I wanted the school to do whatever it needed to do to make it possible for Nat to go there, but they would not. And I did not want to go to court, and I was happy enough with the private program — it had many good points, too — and so I allowed Nat to follow that particular route.
Nat’s current Day Rehabilitation Program is not necessarily an ideal way for Nat to spend Tuesdays and Thursdays (the days he does not work at the supermarket). In the Day Hab there does seem to be a lot of chaos from all the other developmentally delayed and autistic clients. The whole Day Hab experience is one of fairly low expectations and not a whole lot accomplished. The staffing is sparse. The clients hang out, sit on physio balls, practice posture, do puzzles, work on the computer, work out on the stationary bike. They go out to the nearby park, they go to the Y, they swim. They bring lunch and eat it together in the mall.
You could look at this and say, “I don’t want my adult loved one spending his day like that. So unproductive. Such a big ratio, not enough real attention. How can anyone learn anything that way?” Well, maybe you’re right. But if you take another look, you might not feel that way. For one thing, with ratios of 1:7, your guy has to learn how to get his needs met. He needs to navigate all those other clients, he needs to pay attention, he needs to be able to get the staff’s attention. These are survival skills. That’s not so terrible a thing to spend your afternoon on. Nat works three days a week, and so he has only two days in the chaos of Day Hab, but you could look at his job and say that all he does is walk around a parking lot. But we say that he has a great job, he gets paid minimum wage like any other worker. He has to perform a certain way or he will be fired.
I know of parents of guys like Nat who take them out of the day programs because they don’t want them to work a job that’s beneath them — like cleaning, for example. Others don’t want their guys in a group home like Nat’s because everyone is so “low functioning” and so what would he learn? Those parents believe that there always have to be higher-functioning role models. But what does that mean? What if the other peers can read or talk but they are unfriendly? What if the other peer cannot talk but he makes your guy laugh?
We all have to think about what are our goals for our children and help them get there. We have to fight for the best services. But we also have to be realistic. And, more than anything, we have to try to look at what is given sometimes in a new way. When I start to get dejected about Nat’s life, Ned points this out to me. He reminds me that the average Joe comes home from a job that probably is not the most stimulating thing ever, and he grabs a beer and turns on the TV. Or the average Jane who comes home and surfs the net all night. We spend hours doing all sorts of “unproductive” stuff. We hang out with people who maybe don’t help us grow, but we hang with them anyway.
Life isn’t always about striving to be the best, have the best, do the best. Sometimes we just have to make the best out of what we have.