I was raised in a neighborhood with scads of post-war baby boomer kids. We had a proverbial circus growing up in that rarefied time. The family next door was a little older and their children were in their late teens and early twenties. One of their off-spring, Nancy, was developmentally challenged. She functioned at about a five year old level. Nancy would cycle through her developmental age group – by the time she arrived in my circle of neighborhood kids, she was already twenty-two – until the kids became children and Nancy no longer fit in.
Thankfully, this was a prolific neighborhood and Nancy always had someone to play with until finally the years imposed increasing isolation for her. This was a different time. Nancy could roam the neighborhood without hesitation. Everyone knew her, looked out for her and while I am certain there were predators on the edges of Youngstown, Ohio’s North Side, no one bothered Nancy. By the time I entered high school, she was a fully grown woman with the impulse control and mental capacity of a slightly goofy kindergartener. She eventually ran out of playmates as the inevitable maturation process continued for them but was entirely arrested for her.
Her parents – for whom the years never stopped – kept Nancy at home until her mother had a serious health scare. Then doubts about the wisdom of this arrangement began to surface. Here were two adults in their late fifties or early sixties with a child in their home who was in every way as guileless as a five year old but presented as an adult. My mother – of blessed memory – was pretty savvy about such circumstances and with uncommon restraint began “to work on” Nancy’s parents to find a more permanent living situation for her. At least once a week, my mother would find a way to gently suggest that our neighbors were not going to live forever. In those days, most of the institutions (a terrible word that conjures Dante-like images) were either state-run (and most of them WERE snake pits) or religiously sponsored. They found a residential school somewhere in the middle of Pennsylvania and within a year, Nancy was there.
What played out next door was an empty nest syndrome raised to a much higher power. But from what I understood, as difficult as the transition was for her parents, Nancy loved the place. She never was lacking for playmates again. She lived there for just over fifty years before she, too, went to her eternity. For me, that was a story with a happy ending on a variety of social, human and care-giving levels.
Today we have group homes (some excellent, some marginal), residential facilities and a surfeit of programs for developmentally challenged young and not-so-young adults. The genuinely excellent ones are very costly, but there are lesser but still great providers for this population.
Nonetheless, I find the same sort of hesitancy today in parents with developmentally challenged children that I witnessed so many years ago in Nancy’s family. As our generation ages, our ability to personally care for people who fall into this category diminishes. This IS one of the most difficult decisions – among the many already addressed by these families – that they will encounter in their life’s journey.
But there is another odyssey to be considered, that of the person who ages, but remains forever a child. What will happen to them?
There is a point at which “keeping them at home” becomes more selfish than compassionate. Parental love, we discover – powerful and unconditional – still has practical, temporal limitations. There is more complexity to situations like these than can possibly be imagined. Inaction, however, only serves emotional trauma (there has been, I imagine, enough of that) and potential tragedy. Don’t wait too long.