Where Would You Choose to Live?: Q & A with Mom-NOS

Some two weeks ago, Mom-NOS sent me some questions in the Interview Meme. I opened her email of Interview Questions with a mixture of curiosity and trepidation: Mom-NOS asks good questions and the five she sent have been making me think. In fact, she sent me such good questions that some warrant a post of their own and here I respond to Question #3.

(from Mom-NOS) 3. You and Jim made the decision to move to New Jersey based on the schools available for Charlie. If you could move Charlie’s school to any other location (and assure jobs for you and Jim that are comparable to the ones you have now, and make sure that Jim’s parents could either move with you or be well cared-for without you), where would you choose to live?

Short answer: Right here in New Jersey and, if all the criteria Mom-NOS mentions could be found at some nice town right on the Jersey Shore—right by the ocean where Charlie is most at home—that is where I would want to be.

But right here is not so bad, either, despite the fact that we more or less live in the basement right next to the garage of my in-laws’ split-level. Charlie has his own room; as he also does his ABA and speech therapy in his room, the walls are lined with plastic bins full of educational materials and toys and games (and a number of Jim’s books). Jim and I have what I will call a superannuated single dorm room which contains everything, plus the keyboard that Charlie plays and more books. Last weekend I realized the usefulness of this arrangement when Charlie woke up at 7am and ran in and out of the garage and into the front yard while we were waking up; I could hear his voice at every moment and he kept coming back in to say “Hi!”. (So there are advantages to living a few feet from the garage.) (And, like this child, Charlie has always liked the garage and the garage door in particular.)

Long answer. There’s no geographical cure.

This is a phrase of my husband Jim’s; it was coined in the midst of our many moves over the past ten years, between St. Louis, Missouri (where Charlie was born in 1997) and St. Paul, Minnesota (where Charlie was diagnosed with autism in 1999), and then out to New Jersey in May of 2001. We came back to the Garden State because we kept hearing about the autism schools in New Jersey. There were family reasons, too—Jim is from New Jersey—-but the promise of something better for Charlie was the draw. We have lived in three different towns since coming back to Jersey. Charlie has attended some seven schools; Jim and I have taught at some six college and universities. Jim gave up his tenured full professor position when we moved out here; I resigned from a tenure-track one. Charlie at first did well in a public school autism program and there was talk about inclusion and mainstreaming “for some of the day”—in “specials” such as music and library. Charlie’s school days became all about “behaviors” and “incidents” and, from around 2004-2005, it seemed that everything we had taught him was being lost. He didn’t know the alphabet. His backpack often came home smelling strongly from the heavy plastic bag that contained a wet and soiled pair of pants, underwear, and socks, unrinsed. He came home with a bruised forehead after banging his head at the request to “use your fork” at lunch. Jim and I started to say to ourselves, we were really tricking ourselves to think that everything would get better just from moving. We stayed in touch with families from the Midwest and—though I try never to compare—Charlie was not doing as well.It was one of those moments when you look in the mirror and say, Was it worth it to move?And that’s when Jim would interject, There’s no geographical cure. New Jersey does have some very good autism schools and services and a lot of autism awareness and other families have moved here for these, too. Jim and I reminded each other that we knew when we moved here that it wasn’t just going to be happily ever after: We have had to keep asking questions, to keep our ears open to find out where might be a good place to go for Charlie, to ask ourselves where is Charlie really at? What does he need right now? Who is this boy standing before us?

Back in December of 2005 we stumbled upon an answer about where we could, after many schools and years, find the right place for Charlie: The town in which Jim’s parents had lived for over thirty years. To simplify matters, we moved straight into their basement. (My in-laws are elderly and have a number of health ailments and have long needed someone else living with them.) After the inevitable transition period, Charlie has become a schoolboy who waits all attention for the schoolbus with his backpack on his back, who talks about his teachers on the weekend, and (last time I visited him at school), was very much looking like he, if I may so, owned the joint.

Charlie, of course, is far from “cured” from autism but he is certainly peaceful easy-feeling. This house has a large yard and Charlie loves just to spend time in the yard on the grass, under the pine trees, in the driveway. He knows not to go into the street or leave the bounds of the yard. He has a lot of interest in a muddy patch where a bush used to be beside the mailbox (and, after slipping in it one day after a rainstorm, ran in to tell me “Mom! Mom!”—-there a trail of muddy footprints across the carpet and, in the course of getting Charlie out of his clothes and into the shower, mud got everywhere.) (And I long ago learned, never wear anything white.) I was thrilled that he had some in to find me and ask for help—in previous years, Charlie would have stayed outside all muddy and more and more disconsolate until I found him.

There’s no geographical cure but—-while some days I really miss our old house that we bought thinking we’d live in it for thirty years, just like that father at the end of the Oprah show on autism who talked about having to sell his house and move in with relatives and how he just stood outside his old house and thought about what his hopes had once been, and about how much he loved his son—- it’s good to know we’ve found a place where Charlie finally feels so at home, and where he can be and grow up to be himself.

You learn not to wear white.

You learn that mud washes out.

You learn that all you need is what you can carry with you.

These days, Charlie can shoulder his own load.