This week I sent a video of my daughter Maybelle to a friend who recently had a child with Down syndrome. In this video, Maybelle—who’s almost three—is reading word cards, signing and saying the words she sees. My friend responded, “That’s pretty impressive. Is that uniquely Maybelle, or is there some sort of emerging sense that kids with Down syndrome read precociously?”
Of course I was delighted to answer this question for my friend, and I’ll answer it for you: Kids with Down syndrome tend to be good visual learners, so they can often learn to read fairly early. (Downs Ed is a fabulous group in England that’s been leading the research on this.) Kids with Down syndrome may have difficulty speaking effectively, but they can often read quite well–ahead of grade level, etc–if they’re taught to read. This “if” is important, as illustrated by another conversation I had this week.
One of my best friends is an occupational therapist. She just started working with an eight-year-old who has Down syndrome and is in the life skills class at his public elementary school. The life skills class, for those who don’t know, is essentially the class for kids that the school system has decided can’t learn. It’s a segregated special education classroom where kids aren’t taught the kind of academic subject matter you’d learn in second grade; instead, they’re taught how to get dressed, how to sit quietly, how to interact with another human being. As an example of the kinds of academic challenges that are left out of life skills classes, this child is eight, and he can count to three. To three.
Maybelle is almost three years old, and she can count to ten, say the alphabet, and read more than 100 words. I share this with you and with other people in the world not because it’s “uniquely Maybelle.” She’s not a prodigy. She’s a child with Down syndrome who has been given the opportunity to achieve, and—like most of us in the world—when given an opportunity, she rises to meet it. I don’t mean to suggest that she, or anybody, will achieve every opportunity that’s presented, of course. But it’s rare for any of us to achieve without being provided with the space, the support, and the belief that make achievement possible.
Maybelle is one hell of a reader. I am incredibly fortunate to have friends who are speech therapists, early interventionists, and scholars of Down syndrome. These folks told me about high expectations and helped shatter my stereotypes about Down syndrome. I think about the eight-year-old that my friend is working with. His parents probably followed the advice of the authorities at the school, who perhaps haven’t been doing their jobs all that well and haven’t learned that full inclusion in typical classrooms is almost always recommended for kids with Down syndrome. I’ll bet good money that, if given the opportunity, this child would learn to count, to read, to perform fairly well in an inclusive classroom with his same-age peers. But if he isn’t provided with that opportunity, he isn’t going to achieve.
Thirty years ago educators believed it was impossible for people with Down syndrome to learn to read (click here if you want to hear some of my reflections on this). It’s long past time for our false beliefs and low expectations to be sad relics of an era we’ve moved beyond.
Update from Alison: I very quickly got feedback from several people about this post that has made me want to apologize and clarify. I’m sorry to imply that kids–any kids, with Down syndrome or not–should be performing in a certain way if they’re getting the “correct” opportunities. All kids are unique individuals, and their strengths and challenges are going to be specific to them. This of course has nothing to do with Down syndrome: some kids are going to be readers, some kids are going to be athletes, some are going to have artistic sensibilities, some are going to have the knack for fixing things that are broken, some are going to be beautifully attuned to other people’s emotions. Etc. And these strengths will emerge at various times in their lives. I know about one kid who really didn’t read at all until the Harry Potter books came out, and then–as a teenager–he learned to read, and loved to read.
I want us to live in a world with high expectations and lots of opportunities for all our kids. And I want us to appreciate our kids for their gifts, whatever they are, and whenever they emerge. You’re right to be skeptical of my assessment of the eight-year-old I haven’t met: a child’s ability to count, or speak, or read isn’t evidence of lack of opportunity. And it’s lack of opportunity that’s my concern, not the individual gifts and talents of any particular kid in the world.
Again, I apologize, and I appreciate the feedback!
Comments
donna — June 21, 2011
There's a pretty broad spectrum of ability in Down's syndrome. My brother's daughter had a heart attack at age four and was never able to recover much higher function. Maybe counting to three really is the best that particular boy can do, maybe not. I agree it's important to challenge them as much as possible, but don't judge what others are capable of or not.
gwp_admin — June 21, 2011
Thanks, Donna. Please see my note above--I appreciate your feedback!
--Alison
Shelley — June 21, 2011
What a lovely child. From the other end of the age spectrum, Gullette's book Agewise keeps pointing out that we live in a "hypercognitive" world that tends to overestimate those kinds of abilities and underestimate other aspects of identity and worth that are just as important, or more.
starrlife — June 22, 2011
Awwww.... I love that video! It is so exciting to see that kids with DS can do whatever they want to do. I understand what you are trying to convey- that with a rich and supportive environment and high expectations our children can do more than others think - way more!
I've been struck by the broad range of different skills that different kids have- some kids speak very clearly, some not so much etc. Kayli is 11 and is at a 1st grade reading level (altho what I've been finding is that her abilities are not consistent across events - sometimes she is very fluent and sometimes not so much) but she is very gifted athletically and personality wise! My husband and I are both very coordinated and he is very active physically. I am a serious reader and read to her quite a bit - she loves books and movies and still pretend reads after memorizing the story!
And I want to say - I LOVE Shelleys comment about a hypercognitive world. I tend to agree that intellect is way overvalued and other strengths are often demeaned and undervalued, ie- working with hands. Ex- Voc Schools viewed as less than!
Provocative post Alison!
gwp_admin — June 22, 2011
I agree with the hypercognitive world comment, and I'm someone who's often been part of the problem on this front. My world in some ways (professionally, at least) is defined by cognition, and I don't know that I've done enough to question that.
And yet I have a partner who has a kind of physical intuition that's truly remarkable. I often call him "handy," but that doesn't begin to get at it. He's intuitively musical, as well, in ways that simplistic notions of intellect don't even touch.
Jessamyn — June 27, 2011
Hi--loved your video and your discussion of expectations. A friend of ours with DS recently graduated from her "life skills" transition class (she's 21), and we were talking about her love of reading. She's a SMART volunteer (reads to schoolkids who are having trouble learning to read), among other things, and is obsessed with books. Her mother remembers having to advocate for her daughter being taught to read along with the other first-graders in her school--at the time, other same-aged kids also struggled to read, but when it's assumed that your reading abilities or challenges are attributable to a diagnosis, you therefore "can't be worked with." Fortunately, she found a wonderful aide who worked not just with her daughter and her teachers, but with the whole school to challenge their assumptions about ability. The old "party lines" on disability and (ugh) "remediation" are just so tired!
I remember advice I received, and article after article I read, about how I was supposed to try to keep my daughter's exposure to books limited and to "correct" her echolalia, or she'd never "break through" being autistic or learn to communicate. "Break through" what, exactly? She taught herself to read at three precisely in order to communicate via the channel she loved and understood best, stories. Why would anyone think stopping her was a good idea?
I wish there were a greater variety of opportunities for young adults with DS and other kinds of congnitive/learning-channel difference, beyond "life skills." Reading is a life skill. Sharing stories is a life skill. We all need the kind of support that positive expectations offer us.
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