As I got ready to reserve my Cape Cod summer rental, I thought about last August, when Nat, my then-17-year-old autistic son, erupted into a difficult temper tantrum on the beach. I remember watching him, nearly 6 feet tall, stomping and jumping and screaming, while all the families around us watched in shock, confusion, horror and fear.
Nat’s father and I helped him calm down, having been trained by his school to deal with this kind of thing, and I even had the energy to force a smile and tell everyone witnessing this that we had it all under control. The moment passed, but of course, it remains in my heart, another stone of worry, another question mark about the world’s ability to deal with Nat.
It’s a tough world out there, or so the saying goes. And lately, with transition to adulthood hanging pendulously over our heads, those words are the Greek chorus in my own family drama.
It seems like only yesterday that I was fighting with our school system, trying to get him a place in our neighborhood school (or any school in Brookline), but being told, “No, there’s nothing for him here.” Only seven years ago, I fought with our synagogue to get him a Jewish education, too. And how many different extracurricular activities were not quite “a good fit,” and thereby closed to Nat?
We have always been painfully aware of that real world out there that seemed to lay in wait for Nat like some dark, fearsome creature, and so we fought for him on all fronts. We worked hard to get Nat everything he needed, from an education geared towards autism, to after-school tutoring in academic and play skills, to one-on-one aides that would allow him to enjoy school vacation week outings or summer camp, or a week at Cape Cod. Except for the school program, everything we paid for out-of-pocket. We even prepared him for his bar mitzvah, but we did it on our own. He succeeded, tallis, Torah and all.
And this is all while living in the Boston area, surrounded by qualified specialists, in an era where an appropriate education for all children is the law, in a country known for its emphasis on education.
I have learned that once he turns 22, even with a scrupulously comprehensive education, it is like falling off the edge of the world for kids like Nat. There are no mandates in the corporate world, other than that employers may not discriminate based on disability. As difficult as Nat’s childhood and education have been, there are even fewer resources for adults. Competition for funding and services like job coaches is so harsh that chances of getting a job are very, very remote, if not impossible.
And then there’s the workplace itself. According to the Equal Employment Opportunity Commission, there are some 2.5 million intellectually and developmentally delayed people in the United States, and only about 31 percent of the country’s intellectually impaired people work at all. The biggest cause of this? Bias. Prejudice. Unwillingness to accommodate, or even to give someone like Nat a try.
Why? Why is a great country like this, with laws like the IDEA, willing to accept such a low standard for so many of its disabled adults after investing so much in their education? When will the workforce leaders begin to realize the untapped potential among the disabled — sometimes with very minor accommodations?
Accommodation need not only be about building ramps and elevator lifts. Sometimes, accommodation is about understanding that some people behave erratically, and how best to manage that. Some people may have to flap their hands or rock or talk to themselves in order to comfortably perform a task. Sometimes, support on the job is about dealing with a co-worker who cannot make small talk around the water cooler — but give him his work routine, and he will perform it flawlessly.
I can see that the next frontier is going to be all about getting Nat a job; cutting a swath through all of the reluctance and ignorance that’s out there. Making it happen for Nat, by my own efforts. And there will probably be a lot of trial and error with his employers, just like there was with Nat’s early school programs. In the end, hopefully, we will learn as much from our victories as from our mistakes.
I used to think that life was hard, just because Nat had to go to private, out-of-district schools for his education. Or had a tough time on play dates. I used to feel that our Cape Cod vacations were difficult, because of how people would stare at Nat chatting with himself, up and down the water’s edge. I smile wistfully at my younger, naïve self, as I gird myself to slay this latest dragon. Back then, I didn’t know what tough was.
I’m afraid that compared to employment, childhood and education were a day at the beach.
Copyright 2008, Susan Senator