Exhaustion lurks around every corner, haunts every house, lingers in the corners and hangs in the air; exhaustion on a level I do not see in homes without special needs children, exhaustion I never see etched on the faces of mothers with no disabled children. In other homes, in other parents, there is a laugh-it-off: jokes about having drinks are lighter-hearted, comments about bad days are less edged, giggles about sleep deprivation are followed eventually by a nap or a day at the spa.
What is even more interesting is that we seem less permitted to be tired. We have to attend more meetings, talk with more teachers, run around to more therapies, and meet more needs. Many of us can't just tell the kids to go out and play while we fix dinner. Every moment is a teaching moment, every chore a lesson in life skills. Many parents doubtless think nothing of having their child dress in the morning, come down to breakfast, eat their food, put on their coat and backpack, and get on the bus. For many families I know, each step of that process must be carefully choreographed, supervised, assisted, broken into smaller steps and specifically taught.
These concerns are indeed very real for many families, and I am not trying to downplay them or to find fault with the parents' way of thinking. In my view, however, these exhausting family schedules are not an inevitable part of raising children with developmental differences. They are a consequence of the hectic pace of modern life in general, of the failure of our schools and communities to understand and accommodate our children's differences, and of rapid changes in cultural expectations. They are structural problems in our society.
A few centuries ago, a family raising a child with developmental differences would not have been struggling with any of these issues. Instead of meeting with teachers and scheduling therapy sessions, the parents would have taught the child how to do chores on the farm, just like the other children in the village. It wouldn't have mattered much if he took longer to learn, and the parents wouldn't have felt that they had to spend every moment teaching life skills. When the child played outside, he would have been under the watchful eyes of older siblings and cousins. There would have been no carefully choreographed early-morning rituals; if the child didn't dress himself properly before going out to work in the fields, a parent or sibling might perhaps have helped, but it wouldn't have been a major concern.
Of course, life was far from perfect for autistic children in those days. Many of them went through their lives illiterate and with only minimal ability to communicate. Now that our society has more understanding of developmental differences and is in the process of developing useful therapies and technologies, we have the potential to do a much better job of educating the autistic population. Still, I think we've swung too far from one extreme to the other. The villagers of the past accepted autistic children as part of the community while knowing very little about their differences and putting very little effort into educating them. Modern society has the attitude that autistic children can't be part of the community unless all of their differences are extensively catalogued and then, at great expense, thoroughly squashed. Parents are made to feel guilty about relaxing for even a moment, lest they miss some critical teaching opportunity and their child suffer a lifetime of social exclusion as a result.
We can and must find a middle ground. Autistic children, and others with developmental differences, can indeed receive many benefits from modern therapies and technologies, but the goal shouldn't be to force them to fit into a narrowly defined concept of normality; rather, our society needs to learn how to appreciate the diversity of human thought. Parents shouldn't be expected to treat every moment in their children's days as a teaching moment, frantically racing against the clock to mold their children into acceptable future job applicants in an intolerant culture where most hiring managers might as well have a large sign in their offices declaring that the abnormal need not apply.
Just think what we could accomplish if a fraction of that energy went into changing the world instead.