The other day my family came home from grocery shopping and while my kids were getting out of the car and arguing over who was carrying what bags, and who had a key to the house handy and who got to use the computer first when we got inside I noticed that our neighbor was outside and I waved and said hello. We tumbled into the house and started putting the groceries away. About 5 minutes into this process my daughter raised her hand into the air and waved.
“Whatcha doing??” I asked.
“Silly me, I’ve gotta wave at Mrs. N,” she said, and she ran outside to say hello.
Later that night she was telling me about something that she heard at church from Mrs. Cheeseburger.
“Mrs. Cheeseburger?” I asked.
“No, not Mrs. Cheeseburger. Mrs. Foxglove.”
Why did she start with cheeseburger? Because it’s a compound word… It seems a lot of her compound words are filed under cheeseburger or butterfly. Because she knows they’re compound words.
At home we take these glitches in stride—we believe that my daughter is bright and witty and we live here—we have time for her to try things again, time for practice, for retrieving the right information.
It is often difficult to watch my daughter interact with folks that don’t know her. They ask her questions that she doesn’t answer—or answers with something totally silly and after a couple of tries they conclude that she just isn’t a very deep thinker.
Based on this people decide what they will talk with her about, what classes they think she should take and what types of activities are appropriate for her… and they are wrong.
They think they are right, of course. They say, “I have spoken to her myself…” so they think they know. And yet, they don’t.
See, they aren’t in the car with her after the baseball game, or at the dinner table with our family after school. They don’t know that she refers to conversations from church, or chorus, or last week’s party or today’s test for days to come. They don’t know that her gestures when you don’t understand her speech are signs that she learned as a baby and has rarely used since.
Because she doesn’t always engage the way people expect, they believe she hasn’t engaged at all.
Rather than giving her time to figure things out they pile on other questions or other pieces of information and expectations and by then she is totally mired and doesn’t respond at all.
They say “what do you expect, she has Down syndrome?”
This kills me.
She is a great kid with a killer sense of humor and some really astute observations which are lost on most folks. If she didn’t have Down syndrome I wouldn’t care that people underestimate her. I would think I was one of the lucky people with a key to a wonderful secret place and just enjoy it.
But she does have Down syndrome and when people see what they believe are her limitations they rarely even consider that they might not have the whole picture.
And these people have power.
People who misunderstand my daughter can determine her life.
They can decide and create a life for her that matches THEIR assessment of her. They can push her into situations that they believe are at “her level.”
They can feel totally justified in creating a life for her that is devoid of the abstract, they think teaching background information is a waste of time and literacy is a pipedream. They evaluate what they see as her functional level—believe their assessment to be truly reflective of her abilities, make decisions accordingly and THEY ARE WRONG.
They categorize what they see of her skills and then determine what they are willing to invest in her. They try to squeeze a kid who is truly 3 dimensional into their 2dimensional image of her—and they will blame her when she does not fit.
And then when I object to the steamrolling of my daughter like she’s something from a Tom and Jerry cartoon, they tell each other that I think she’s “going to be a brain surgeon.”
This misapprehension appears to be common in disability and it’s terrifically upsetting.
Tomorrow I am going to be posting an interview with my friend Kathy Z. who shares what she has learned going through the transition (to adult) process with her son. This is a terrifying time for our family. We want our daughter to have a life with interest and choice and room to breathe…
I am the mother of three, wife of one. I am a Partners in Policymaking graduate and a committed disability advocate. I want to catch up on my scrapbooking, learn more about art-journaling, get my house in order, read all the books I have set aside to read and change the world--not necessarily in that order. The opinions in this blog are my own and not those of any of employers.