A quick post today related to How Things Are Screwed Up Out There in the World.
Today I had two different conversations which I myself didn't initiate (the point being that I wasn't out there scrounging around looking for things being screwed up). In one of them, a woman told me about her three year old son who has spina bifida. She told me that when they discovered, during her pregnancy, that her son had spina bifida, the doctor told her that they should terminate the pregnancy because the baby would never be able to do x, y, and z. It almost doesn't matter what x, y, and z are, because this story ends as many of these stories do: he's three and he's already doing x, y, and z.
She also said that she and her partner did a tour of preschools that was something like ours. One school actually said to them, "We don't take people like that."
In the second conversation, a mom of a child with Down syndrome told me about a family member--a doctor--who said that she thought it was terrible that the media leads parents of kids with Down syndrome to have "false hopes." At first I was just furious, but I toned it down a bit and was able to email this response:
What doctors in 1970 would have called "false hope" is just mundane daily reality in 2011. Part of what has made it a mundane daily reality for Maybelle is the fact that parents in the 1970s decided to go ahead and have "false hope" and not institutionalize their beloved children. And lo and behold: the doctors were completely, completely wrong.So those are the things going on out there in the world.
Your therapists will be far better medical resources for you than many doctors. That's what I've found. I've also found that it's been great fun for me to tap into my activist spirit. I veer between the excitement of seeing how much better the world is today, and outrage at the continued block-headedness of many folks (and I'm going to trust that this family member can be re-educated as she sees your child bursting through all her low expectations).
Your child is going to blow your mind. You're going to have high expectations, and this person's STILL going to exceed them. I say have emphatic, passionate, exuberant hope!