A Father's Perspective on DS (Day 5)

I promised Katie that I would write one blog entry for Down Syndrome Awareness week, so here it goes.

My journey towards living and working with people with developmental disabilities started after high school. Looking back now at that fact is a little strange. After all, I was a part of the inclusive generation. I can remember kids in my classes who had disabilities all through school, but for some reason it never clicked with me. De-segregation had happened, and kids with disabilities were a part of the classroom and not simply observed through the glass of the Learning Assistance room. I was never really friends with anyone with a disability in school, but I don't remember shunning them or doing my best to avoid them. They were simply there alongside the rest of us - albeit usually with an aide or other adult with them. Of course, simply recognizing the existence of people who deal with disabilities is not a form of inclusion in itself. At best, it was a cold sort of recognition of the larger societal context. People with disabilities were there, but they had no impact on my life.

There was one exception to that rule, and that was Brent. Brent was a tiny little kid with Down Syndrome, who had been adopted by a family in our church. Brent was a chatty little guy, who would jabber at you non-stop with such speed and ferocity that it took a pretty keen ear to recognize what he was trying to tell you. He would run around after the service, arms and legs flailing like he was about to fall over at any second - but he rarely did. His chest was covered in scars from repeated surgeries to correct his heart, beginning when he was only days old. But his smile usually stretched from ear to ear, and his happiness was infectious. For reasons that I won't go into here, I tended to keep my school life and my church life very separate, and so my appreciation for my little buddy Brent didn't bleed over into any sort of generalized awareness of disabilities.

It was after high school that Brent's dad, John, asked if I wanted to come and help at a camp for adults with disabilities. I had been laid off from my job at the local bookstore, and was looking to keep myself busy with something, so I said yes. I remember regretting my answer almost immediately, and trying to think of a way to back out without coming across as an ass. I hoped that some kind of opportunity would come my way that would be impossible to refuse, so I could avoid an experience which I was sure would be a disaster. Obviously, that opportunity never came. I went off to a week of training camp and did a crash course in caring for people with disabilities. John had alluded to the kinds of things I would have to face, but that first week made me even more nervous than I was. The thought of doing personal care for another person was revolting. The idea that I would be presented with every part of the spectrum of developmental disability was nerve-wracking.

The first week was a disaster. I was in an integrated camp, where there were two campers with (diagnosed) disabilities, and the rest were inner-city kids. I was responsible for one kid, Nathan, who had a diagnoses of Autism and ADHD. The rest of the counselors and volunteers trundled off to different camps, and I was largely on my own. It was hell. Nathan was physically aggressive towards both me and the other campers. He tried to break windows and doors, he almost broke my glasses, and I couldn't figure out any rhyme or reason to it. I had very little understanding of how to deal with complex behaviour - I was just a kid trying to do his best. I could see very clearly that even Nathan didn't understand what was happening to him in those moments.

Nathan was sent home halfway through the week. I seriously thought about going home myself. But for some reason I didn't.

The rest of the summer was a marathon. We were short staffed almost every week, which meant that I had very little down time (which as anyone who knows me will attest to how important it is for me to find time by myself). I was introduced to wheelchairs and mobility aids, g-tubes, more behavioural challenges, augmentative communication systems, and people with all sorts of varied complexities. I learned to change a diaper on a sixteen year old teenager (which, incidentally is far more difficult task than changing an infant). I had sleepless nights. I cried. I cursed. I worked 18, sometimes 20 hour days trying desperately to meet the needs of a different set of people each week.

And I changed.

I began to realize that the people I so self-righteously thought I was helping really had the world figured pretty well. They knew the importance of friendship, the joy of helping out, the reward of working (we were never short of volunteers to help in any way, including mopping the dinner hall after meals). The people I was there to support were far more in touch with their humanity than I was. I remember watching two ladies stage a feud that had most of the camp worked up into a frenzy, and then release all that tension in a moment of tears when they apologized to each other in the dinner hall, and embraced as friends once again. I saw every human emotion present in those adults, from anger to love, from anxiety to hope, from fear to trust.

That fact should not be as surprising as most of us find it to be. Because when you get down past the prejudice and the sneering intellectualism of our society, the truth is that regardless of IQ score people with disabilities are still people. They have the ability and the right to experience everything that the rest of us experience (and everything that we take for granted). They can work, they can love, they can fight, and do everything else that we expect of those of us who appear to be neurotypical.Whether despite their disability or because of it, there is a resiliency that demands our respect and admiration.

I wrote this post as an explanation to a question. The question was, "What is it like to be the father of a girl with Down Syndrome?" My answer was immediate and instinctive.

"The same as it is to be a father to a girl without it."

Sofie has challenges  - but the vast majority of her challenges do not exist simply because she has Down Syndrome. Her challenges are related to coming out of an orphanage, missing those key years of development that all children experience. And in some ways, her challenges are no more and no less than than Livi's, whose emotions and obsession with detail often get the better of her. Sofie's challenges may not be any more substantial than those my parents had to deal with, in an arrogant and often angry son, who believed that he was too smart for school and nearly wound up paying the price for it.

My interactions with Sofie are not really any different than my interactions with Livi. We play, we sing, we deal with the tantrums and over-attachment. But when I look at Sofie, I don't see a life of challenges - I see a life of opportunities, opportunities that she would not have had in Bulgaria because they believed that her disability was really an inability. I see a life where she has the same opportunities afforded to any of the rest of us.

Because we're all human. And we all deserve to be treated like one.