The day we first heard Verity’s news seems so far away. It’s hard to go back and remember what it was like to know hardly anything about Down syndrome. It seems so close and ordinary and familiar now. What was I so afraid of?
There were several factors contributing to my initial shock, fear and grief.
One was that out of all the possible scenarios I had imagined for our children, Down syndrome was not one of them. In fact, I hadn’t thought much about Down syndrome at all, and certainly had not related it with our family. If the concept ever came into my peripheral vision, it went into the category of “Other Families Who Know All About It.” Ridiculous that I never considered why they knew all about it, huh? Or that they didn’t somehow choose it as a life theme? But it never stayed in my mind long enough to analyze any of this.
Another factor was that I’d never had to become aware of Down syndrome. Out of all our very large extended family, nobody has Down syndrome. I had never seen it up close and personal in any of our friends’ families. There was an almost complete gap in my experience and understanding where Down syndrome was concerned.
But that phrase “almost complete” holds the biggest clue to where my fear came from. Because I DID have a little experience. I had subconsciously drawn some conclusions from that little bit of experience. And nothing else had ever come along to correct those conclusions.
When I was a young adult, there was another family at our church fellowship whose uncle lived with them. He was probably in his fifties, his name was Uncle Walter, and he had Down syndrome. He fit quietly into the background of the fellowship. Folks talked to him (when they talked to him) like he was a child they were obligated to politely acknowledge.
He didn’t intrude into my consciousness until I was 18 or 19, when this family asked if I could come and stay at their house for a week while they were away. Uncle Walter was completely able to maintain his own routine, he just needed someone to make his meals and drive him to the fellowship on Sunday. No big deal. I looked forward to getting a lot of reading done with hardly anything else to keep me occupied.
What I just accepted then, and didn’t scrutinize until recently, was that he had minimal communication skills. Our three year old twins can verbalize better than he could. He hardly spoke all week. He only came out of his room to eat meals or attend to his personal grooming. When I would talk to him at mealtime, he didn’t seem to understand what I said.
If that sounds boring, it’s because to me it was boring, except for all the reading time I enjoyed that week. When it was over, I went right on to the next event in my life, and the memory of that one faded into dim unimportance.
In the years since then, I occasionally saw some middle-aged adults with Down syndrome in public, and to me they all had a similar appearance. They were overweight, dull-eyed, poorly dressed and had unattractive haircuts. As if nobody around them thought they were worth the bother. They were usually tagging along with others who interacted over their heads. Or with a companion who sat across the table from them without conversation. Sometimes they were in groups of disabled adults, being herded along by their caregivers. I couldn’t remember ever seeing an adult with Down syndrome who looked happy and well-cared-for, surrounded by a loving, vibrant family.
Between seeing Uncle Walter and seeing the (to me) anonymous adults with Down syndrome over the years, considering that this would be our daughter’s future was cause for grief. It was certainly not part of the hopes and visions that we have had for our children’s adult lives.
But do you know what we have found out? None of this needs to be Verity’s future. It does not automatically go with the Down syndrome territory.
Throughout the last century, up until sometime in the 1970’s, if parents had a baby with Down syndrome, they were doing well just to keep him at home and love him instead of institutionalizing him. There was no early intervention, physical therapy, speech therapy, occupational therapy, or education for children with Down syndrome. Often there was insufficient medical care, so that many did not survive childhood.
I began to realize that Uncle Walter, probably born around 1940 or earlier, was limited by the logical results of minimal intervention and education. For all I know, he may have been deprived of the benefits of a healthy family life, and instead spent years in an institution until someone came along who was willing to take him into their home. Picture what would happen to a typical child who was treated this way! Let alone a more physically and mentally vulnerable and needy child!
Besides this, I was told that a lot of the information about Down syndrome from before 2002 or 2003 is outdated and pretty much useless. Amazing! And that more is being researched, developed and applied all the time to help each individual reach their potential, whatever that may be. Because of this, folks with Down syndrome are now achieving what nobody believed they could, just a few decades ago.
The truth is, we simply cannot judge what Verity’s future will be like by surveying our mental pictures of the majority of older adults with Down syndrome who are living now.
There is another biggie that contributed to my initial fears, but it deserves a post of its own. That will be a task for another day.