Sam, Danielle, Cindy, Joann who drives the bus, Marian at the after-school program, Patrice, Anne, maybe Mamie, Charlie's swim teacher? (Not to mention his teacher, aides, school speech therapist and OT....): The upcoming week in my datebook is a scribble of names, times, and phone numbers: Who's babysitting? Who's picking up Charlie? Who's coming over to "home house" and when? Where do I need to be and when and does the black car have gas?
It takes a small army of therapists, teachers, relatives, babysitters, to raise Charlie and, indeed, just to get through a week if not a day. This point was first driven home to Jim and me in the first year of his home ABA therapy program. We had a consultant, a lead therapist, and five therapists who we had recruited ourselves. (Plus the speech therapist, OT, and special ed teacher provided by the St. Paul Public Schools, and the music therapist.) Jim had a sabbatical and was at home to answer the door, listen anxiously when Charlie hollered, grin when Charlie squealed with giggles, troubleshoot when there was trouble, and drive home the therapists through a Minnesota winter.
After Charlie had been diagnosed, I had been the one to outright refuse to have a "bunch of stangers" coming into our house to work with Charllie for forty hours a week. Jim saw what he saw (Charlie and his minimal skills and non-existent language). We contacted a Lovaas agency in the Twin Cities in July of 1999 and met with the director. Charlie played with a bead toy and (to our proud parents' joy) put together a puzzle of the fifty states. The director nodded at these feats and noted that, yes, Charlie fit the diagnostic criteria for autism. And Jim and I realized, it was indeed a sign of Charlie's autism that our barely 2-year-old boy could do that fifty states puzzle.
The next day, we drove east to the Jersey shore to the tune of two CD's, Barney's Favorite Songs and Putamayo's Celtic Tides. The first day, we decided we should consult with other professionals about whether or not we ought to do the Lovaas program. The second day, we wondered what we had been thinking, and strategized about how to find therapists--college and grad school students who became a family to us, and who, if I may be a bit melodramatic, saved Charlie's life, by teaching him to love learning and what learning is; by teaching him to talk, one sound at a time.
From 2000-2001--the second year of Charlie's having an intensive home program, and his entry into special ed preschool--we moved back to St. Louis, where Jim was a tenured professor at Saint Louis University. A mini armada of nine therapists went through the door, not to mention the special ed teachers, speech therapists, the OT, and the school consultant. When we moved back to New Jersey in the late spring of 2001, we were quick to start up a home program (under Tara's supervision) and to find a babysitter. Jim gave up his tenure for "adjunct" and "visiting" positions and I tried my hand at a different field (English composition) at Seton Hall University; we have been more than fortunate and have both been able to have academic positions here in the New Jersey/New York area again.
Best of all, we have a beautiful boy with a beautiful voice and a good way about himself. In the warm September sun, we could not resist a trip down the Parkway to the beach, where Charlie (unlike last Sunday) swam and did headstands and splashed giddy-happy about in the ocean. The water felt as if it were 80 degrees. Charlie saw the beach house we had rented and the closed ferris wheel placidly and dug into French fries and shrimp and some tartar sauce with gusto before checking out a bayside playground. We watched the sun set, warm and orange, and drove home laughing as Charlie called out "Miss Greene red car! Jackie white car! Danioh! Gong Gong Po Po yesss. Miss Greene oo-ee, Jackie home house! Sara yes. Danioh----Kristy blue car!"
Now and then when I say "his name is Charlie and he has autism," I am asked "is he your only child?".
"Yes," I say.
It was a few years ago that Jim and I finally, simply, said to each other, we will have "just Charlie." We had long been thinking that he would be our only child and talking about this made it true. Studies of twins suggest a genetic basis for autism; having one autistic child dramatically increases our likelihood for having another. And, on the one hand, I am already embracing another child on the spectrum; we know what to do and would do it even earlier than we were able to for Charlie. And another part of me stamps its foot and points out, how I would probably not be able to work (someone's got to be home if we have a home program); the time needed for a baby, period; the fact that, as he has gotten older, Charlie requires more and more time and attention, and I joy more and more to give it. Charlie's needs are such that we often think he would not be where he is without our dogged attention and all the time spent. It is true, if we had another child, and that child were typical, my mind would be a bit at rest thinking that there would be someone around for him when Jim and I are gone. But would that sibling have some bit of resentment, or at least ambivalence, Charlie while loving him, knowing that Charlie would always be there, always be needing to be taken care of? Seeing friends' typical children together with their autistic brother or sister can make me wonder "what if," but also reminds me simply of what a great boy Charlie is.
Through and by the grace of Charlie, we have met Sam, Danielle, Cindy, Tara, Miss Greene, Jackie, Stella, Patrice, Anne, Joann, Marian, Arielah, Kristy, Beth. We saw Stella and Versha get married. Charlie talks about "Zachary," Stella's baby. We cheered Danielle, Arielah, Shiri on when they graduated from college. We have met parents, boyfriends, fiancés, sisters, of therapists and gushed over their dedication to Charlie and children with autism.
Charlie will be and is our only child, and what friends, sisters, brothers, family we have gained and gathered to us, because of him, a boy named Charlie Fisher.