I try to stay out of "discussion threads" because they lead to no good. No good, I tell you! But sometimes I forget my rule and innocently make a comment. Oh boy...then I remember why I don't do that. The one thing that always hits me after being bombarded with implications that I don't set expectations high enough for my son with Down syndrome or I put limitations on him or I'm wrong to feel sad every once in a while when we don't hit a milestone or get to do other things that his peers are doing is this: we are not very accepting as a community. I'm being specific here because honestly, people, it kind of hurt my feelings. I mean, yes, it really did hurt my feelings.
Which leads me to the real issue here: if we want acceptance of our children and adults with Down syndrome, then we have to start at home. No, not in YOUR home...in OUR home. Yep, the Down syndrome community. Heck, the disability community. Once upon a time (some of you have heard this already), a parent at a disability advocacy conference in Austin commented on the fact that my son had Down syndrome, "Oh, that's the Cadillac of disabilities." Yes, they said that. I have witnesses. I wanted to tell them (ok, I thought of my comeback much later in the hotel room) that sometimes it felt like a Yugo, sometimes like an Edsel and sometimes like a semi.
But what I heard from other parents and even nonparents around the country was troubling. They stopped going to the local DSA events because they felt bad because their child was so high-functioning. Or that they stopped going to the local DSA events because their child was so low-functioning and they felt inadequate as parents. And some of them...they stopped going because their child had a different form of Down syndrome and they didn't feel welcome. Wait - I'm not done. Some stopped being involved because the "inclusion" topic always led to the fact that they were happy with the placement of their child in school and everyone harped on them for not fighting hard enough. And, some...some stopped going because their children weren't children anymore and they didn't feel included in all the "young" events that their group constantly focused upon.
I was one of them...one of the people that liked to speak up and tell people that inclusion was the ONLY way to go. Fight the system. Spend more time on after-schooling. And you know what...I was wrong to do that. I have realized that I did those parents and my community a disservice by preaching acceptance and inclusion from my soapbox but not practicing it when I stepped down. We have got to respect each other, people. We have got to get better about NOT having online conversations where we alienate members of our community. That parent or educator or medical professional that just had their involvement soured by that conversation or flippant remark might have gotten soured to the whole community. Who knows? They might have been poised to bring great change to our community as a whole in the years to come and we just ruined it.
Less preaching, more listening. Less talking at people and more talking with people. More respect. More acceptance. More inclusion. And not just for our wonderful friends and loved ones with Down syndrome.