I went into a kind of blogger withdrawl. We headed out to Frankenmuth in Michigan and the mapquest promised it was a drive of just over 4 hours. But the damn computer hadn't figured on the tie up on the 401 or the 402 being totally shut down or reaching the border at shift change. We got to the hotel, no internet access as promised and trust me Frankenmuth does not have a trendy internet cafe. I talked the hotel clerk into letting me post a brief note saying 'no posts' and that was it. Got to the room to order pizza, the pizza delivery guy had slid into a snowbank so no delivery that night. Not the best of days.
But the next day I did a workshop for teachers and a few parents slipped into the crowd. We had lunch together in a Bavarian chicken restaurant that had a woman who'd seen better days in the 30's playing German music on a squeeze box. Lovely, charming to read about but annoying in real life. But what was cool was that we ended up sitting across from two of the parents who had come for the day. They were both parents of kids with Down Syndrome and part of a Down Syndrome support group.
Lucy and Barb, I hope they don't mind me using their names, were wonderful company and full of tales of their kids. They talked about one of their projects as a group. They did educational sessions for doctors about Down Syndrome to try to get Doctors who talk to new parents to think differently about kids with Down Syndrome and their potential. They said that so many parents had horror stories about the kind of things that doctors said to them - their hope was that Doctors were educable! And if not educable, trainable.
Interestingly the parents had discovered that the best education that doctors could get would come from their children. They ensured that their kids with Down Syndrome were there as real live testimony that their lives were full of school, of kid kind of interests and activities and kid kind of hopes and dreams.
Their eyes lit up as they talked about their kids learning to do presentations and to speak positively about life AND about Down Syndrome. Their children gave the lie to all the horrible messages of doom and devastation that many parents are subject to when they are first told about their child's disability.
Amen to Lucy and Barb, Amen to their kids, Amen to everyone who works tirelessly to end stereotypes.
These women aren't paid to do what they do, they do it because they believe in their kids, they believe in parent's rights to honest information, they believe in speaking out and speaking the truth.
I've never liked the language that refers to people with disabilities as 'special' but I came to realize that sometimes their parents are ....