When you have a baby with Down syndrome, life suddenly gets very complicated. You feel like you've been kicked out of one universe and somehow wound up in another.
But after a while the tears dry up and the fears die down and life begins to resume a patina of normalcy.
The baby? The baby's adorable. He's not a baby with a difference to you.
You learn a lot, so you work a little extra harder to make sure your baby gets the best start possible.
And life goes on.
And then, one day, life stops, and you realize something is very different, and very wrong.
The experts assure you that just as all babies are different, all children with Down syndrome are different and they develop at their own pace and in their own time.
But you know, and your family gradually starts slipping back into that other universe, the one where everything is strange, and you don't know the rules of being there.
After a while, the experts confirm what you've known for a long time: There's something else going on with your child besides Down syndrome.
And that thing is autism.
Autism occurs in about 5% of children with Down syndrome, a considerably higher rate than with the typical population. Most often it's mild.
But sometimes it isn't.
We are friends with a family whose son with Down syndrome is severely affected by autism. We have worked on projects together, and they've visited the Ranch on many occasions. We've enjoyed dinners out as couples, and in their home while their son was under the care of someone else.
Then several weeks ago we invited our friends and another family, also with three children, including a son with Down syndrome, to come out to the Ranch, have dinner and a swim, and spend the night in our cabins.
We had been around our friends enough to know that their son, whom I'll call Sonny, requires constant vigilance, but he loves the water so our plans would fit well with his needs. Maybe it would even allow for some visiting time with his mom and dad and the other family.
It was a beautiful evening. It was, however, a real eye-opener, too.
Here we thought we'd had some idea of life with Sonny, but in truth we'd known nothing at all about what it takes minute-to-minute to keep Sonny and those around him safe.
First we noticed that our friends were hyper alert at all times–Sonny's sisters as well as his parents. Someone's eye has to be on Sonny every moment of every day.
Fortunately, Sonny was mostly content to stay in the pool. Our friends had recently invested in a pool for their home and say it's the best money they've ever spent!
But still, Sonny could not be trusted close to the other family's smaller children. He'd grab their hair or do something similar if he had the chance. His sisters–one older, one younger–were quite adept at redirecting him when a potential opportunity for mischief cropped up.
In a lull between interventions, Sonny's mom and dad spoke of having had the chance to attend a Joni and Friends family retreat a few weeks before at Camp Allen.
“We gave up vacations a long time ago, you know,” said the dad. “Sonny's environment has to be totally secure. He tears cabinet doors off their hinges if he gets a chance. He has no sense of personal safety and he doesn't sleep. He will walk out the door in the middle of the night in a strange city, so we always have to move the beds to block the door so he can't. This retreat is the first time ever we've just been able to go somewhere and turn Sonny over for the day to someone else, and we and the girls could enjoy the activities and surroundings, but still come together as a family for part of the day, as our whole family.”
They'd waited three years for their name to come up on the Joni and Friends list.
Sonny's autism is so profound you don't even notice the Down syndrome. I recalled the first time I'd talked with his mom about his condition. She had confided that she was depressed about his current educational goal as laid out in Individual Education Plan at school: by the end of the academic year, Sonny was to be able to board the bus by himself–not board the bus, find his seat, sit down and stay there for the ride.
Just go up the stairs of the bus.
Sonny was ten years old.
I try to imagine life for Sonny's family. There you are, coping as best you can, more and more isolated as your son grows older, bigger, and stronger.
You have little in common with the parents on one side of you who have raised their daughter with Down syndrome into a cheerful and competent young adult. Neither is your experience like the young family whose eight-year-old son with Down syndrome is playing games in the water with his siblings and friends, so able and tuned-in it's hard to believe he has any disability at all.
The Down syndrome pretty much excludes you from the autism community, and the autism pretty much cuts you off from the Down syndrome community.
And so you live, stranded in that other universe–loving your son, doing the best you can–coping, coping, always coping.
And it's really, really hard.
Images courtesy of:
universe: Google images
boy in pool: http://www.rivercitypools.com/images/boy_swimming1.jpg
baby with down syndrome: dsansw.org.au