This has been a post that has been partially written for a long time, and then John Franklin Stephens essay which was published this week—this is what I call synchronicity.
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…
So how do we get there from here?????
Picture from here.
5 comments:
Oh Terri, this is SO true. And if you add the lack of information here (many people here in Israel do not read high level English, and therefore don't read up-to-date info) it gets really gastly.
I have had educators give me that condoning "she's just a parent", or "she doesn't accept the reality of her child's retardation" looks. One I stopped in the middle of a session and said:
"You know, I will admit that I am not an educator or teacher. But I read more on Down syndrome each year than you have in your entire life. I read the most up-to date professional magazines. I have published two articles in international Down syndrome magazines. So I may be "Just a mother", and may not be a teacher, but I am not an ignoramous on the subject. In addition, I live with Ricki all day long, 7 days a week. And I will have to continue to deal with her behavior and quality of life long after you have retired. I know exactly what she is, and isn't, so please don't tell me that I don't accept her limitations". Miracle--they listened!
A friend who gives introduction on inclusion to school staff here starts of with "(name of child), like all children with Down syndrome, has an intellectual disability of retardation." She does this as she knows that most staff enter the meeting with the feeling that the parents and inclusion staff don't accept that the child has retardation. So she settles that misconception with the first sentence.
I know how disquieting and upsetting this non-understanding of your child's level is...and I wish there was an easy fix."Wish", of course, being the operative word here.
Terri,
Your posts really help me understand how my sister feels as a parent with my nephew's disability, dealing with educators and people in the community. It extends to church situations, social contacts, other family members - she's talked about it to me how *she* gets judged, which makes things difficult- more difficult than they are. As rickismom put it, parents live with their child 24/7 and a team approach would best be served by respecting the knowledge and insight that contact and closeness brings!
Thank you ladies, the expectation that the things that limit people with disability mean something about their level of capability is not right. Cognitive Disability does not mean what people think it means and the only antidote I have found relationship with my daughter...
I agree that being truly accepted as a team member with something to contribute (and if professionals could acknowledge that what they know may not be all there is to know...) would be wonderful!!!
Hi, Terri,
I love this sentence:
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.
That's it, exactly.
There's the assumption that all skills can be measured with IQ tests. (Plus the assumption that IQ tests don't have biases: they are biased toward those who can speak and understand language, for one thing).
Then there's the assumption that all the IQ test-measured skills of someone with an intellectual disability are equal. When they have strengths and weaknesses like anybody else. Studies have shown that different syndromes have different cognitive profiles: people with Down Syndrome tend to have strengths in visual and spatial processing, for instance).
Thank you, Tera. You are so right. There is great variation among disabilities. And within the diagnoses. And within each individual. Making blanket statements about 'functional level' of ANYONE and then making decisions and assumptions based on those--as your post says--sucks!
My daughter's disability is quite differnt from yours, but the mindset of the world outside strikes me as quite similar.
Thank you for your blog and for your comment!
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