“With a few flowers in my garden, half a dozen pictures and some books, I live without envy.”
Sunday, March 05, 2006
I slept a little late this morning and when I got up I was a bit surprised to find Alex had convinced John to go outside to play basketball. I watched from the window as they passed the ball back and forth beneath the goal. When John made a shot Alex transformed herself from opponent to cheerleader, jumping around wildly and yelling, "Yeah, John!" as he beamed with pride.
John has to be in just the right mood to engage in any sustained interactive activity. More often than not, his autism draws him into solitary activities. When John was younger, we used to pester him to do the sort of social things we thought he should be doing. But being forced out of his shell made him melancholy, and over time we've come to realize that John has his own preferences that should be respected.
What's it like, having a child diagnosed with autism? It's like being thrown into a pit - a dark pit where you clutch your little one and fall, fall, fall through the darkness not knowing where you'll land. Someone whose three-year-old is diagnosed with autism can't look at an autistic teen and say, "So my child will be like that one day," because austim is such a wide and varied spectrum. Some austistics are extremely high-functioning and intergrate well into society. Others are so profoundly compromised that they need constant supervision to keep from hurting themselves. Many, like John, are in the middle.
With time, though, one learns to be grateful for what one's child can do, rather than focus on what he or she can't. Yes, part of me grieves that John will never know romantic love or comprehend the plot of a good book. But part of me admires and even envies a life uncluttered by prejudices, jealousies and grudges. Unswayed by the politics of life and relationships, John loves who he loves with genuine affection. He finds joy through immersion in his chosen pursuits. He adores his video games, riding our Haflinger pony Guinevere, bike riding, playing soccer and doting on Jingles the Cat.
He has a very Zen perspective. He lives in - and enjoys - each moment without worrying about the next.
As a brother, John has taught his siblings the importance of appreciating the limits and differences of others, as well as something about autism itself. They all love him, but it is 8-year-old Alex who is his biggest fan. She's become an ambassador of sorts, a protective go-between quick to explain her brother's lack of eye contact and reserved manner to strangers.
Alex was about three when she noticed something was different about John. We were in the car and - as usual - she was chatting him up. On this day, he was particularly quiet, and it annoyed her.
Why, she asked us, did John not always talk to her.
Larry and I looked at each other and explained - as best one can to even a precocious three-year-old, that her big brother was autistic. He was different and didn't always like to be touched or carry on conversations.
We waited for a reaction but got only a shrug. Alex seemed quite willing to accept John for who he was.
But a few days later, when John was ignoring her again, she ran up to me and fumed, "Mom! John's being autistic to me again!"
So we sat her down - trying not to laugh - and explained to her that being autistic wasn't something John was doing to annoy her. He was born that way, just as some folks are born blind or deaf. Part of loving John, we said, is respecting his limits and letting him be alone when he needed it.
Allowed to flourish on his own timetable, John has become ever more approachable and engaging. The child who used to retreat into himself is with us now more than ever, knowing that if he needs to escape for a bit no one will try to stop him.
Watching the gains John has made over the years has been bittersweet. We know there are limits. But the pain of his diagnosis has been overwhelmingly replaced by the blessing of his sweet, uncluttered nature and ability to teach - from his own world - by example.
I've heard it said that God gives children with disabilities only to special parents who are up for the task. But I don't believe that. I don't consider John's presence some cosmic flattery of a God who saw us worthy of parenting him. No. I believe children like John are here to teach those of us who have much to learn. I'm humbled by John's presence, and thankful for having been sent such a teacher.