A Christmas Once Missed, and a Christmas Gift For Always

I read about plans for a new preschool for autistic children (in Brownsville, Texas, which—one upon a long while ago—-I briefly visited). An occupational therapist is hoping to start the school, which sounds as if it’ll have some emphasis on sensory sensitivities. I read about a new book on understanding autism written by a written by a 13-year-old whose best friend has a younger autistic brother. I think back ten years ago, to the winter of 1998.

That December was the first time I didn’t make it home for Christmas in California since I went to college back east in 1986. Charlie had had a number of ear infections and colds and the like throughout September of 1998 and, with his latest raging infection, the pediatrician told us we couldn’t take him on an airplane for the holidays. Charlie wouldn’t, we were told, be able to stand the pressure on his inner ears—-so Jim and Charlie and I celebrated Christmas of 1998 at the Rio Grande in St. Paul.

We did make it out to California to see my relatives after Charlie’s ears had cleared up, but all was uneasiness. It was becoming more and more apparent that it wasn’t just because of all those ear infections that Charlie was not talking and kept so much to himself in his daycare room. The image that is fixed in my head from that trip is of a very small Charlie standing between the couch in my parents’ study and the coffee table. My parents had given him a V-tech toy laptop. We turned it on for Charlie and he stared in the direction of the screen, while cheerful recorded voices said “press enter! count how many squares.” And Charlie just stood there.

Charlie was diagnosed with autism a few months later in 1999. And I still so often feel that twinge. What if there had been X program when he was just diagnosed; how much might it have helped him? What if we’d been able to move immediately from St. Paul back to New Jersey, what might that have meant?

And then I recall the conversation I had a few months ago with another mother of an autistic son. She is Lila Howard and is 84 years old, and still the primary caregiver for her son, who’s now in his 50s. She noted that we parents today have it “served up on a silver platter.” She was exceedingly glad about this, and her words gave me a wake-up. How many therapies, programs, services has she learned about over the years, and thought about as helpful to her son? How many more will she hear about still—how many more will I?

Now stop right there, I say to myself. There’ll always be “some new thing you’ve got to try” (one hears this all the time, as it is). There’ll always be some fabulous new remedy, or treatment protocol, or super-duper guru therapist. There’ll always be some new formula for hope in a jar.

Or rather, as I think of it—-even over the past two days when Charlie, far away from his usual routine, his usual order, here in California for Christmas, has seem unmoored and hyper-anxious, and trying so deeply hard to keep it together, and not able to at all, at times—-you just have to keep hoping.

And not the least because I want Charlie to know that we always, always believe in him, and that every day we spend with him is the best present there can be, this Christmas and for every Christmas to come.