Tuesday, April 08, 2008

Down Syndrome and Delays

Most of us parents fall into the trap of bragging about how young our children accomplished certain skills. But the truth is that there's nothing inherently great about learning to walk at 6 months or learning to read at 14 months. In fact, there are some significant problems with both.

Sure, your reading toddler is probably a very bright child, but there's a lot of very good research that indicates that pushing reading too early can hinder other important kinds of development and cause problems down the line.

So when Ellie was invited to participate in a special pilot program for teaching young children with Down syndrome to read, I did some research into the program, then went to the information session with my skeptic hat on.

After reading about the program and listening to the presentation (all backed by solid research) I was sold. We enrolled in the pilot program, and it's going very, very well. Every day, Ellie reaches for her big, pink, plastic box and says, "I practice reading now?"

So cute.

Ellie is four years old, and she has another year of preschool before she's scheduled to start kindergarten in the fall of 2009. If I might dwell on the numbers for a moment, she reached for toys, rolled, and sat as an infant. She learned to walk and talk when she was one, was BM trained by two, and out of diapers before she was four (though she still sleeps in a pull-up). She has significant delays, but they're not holding her back too much; her stats look pretty good on paper. Due to her father's giant genes (heh heh) she's also 50th percentile for height and weight, which is large for a child with Down syndrome (she's 95th percentile on the T21 charts).

So what are the nature of the delays associated with Down syndrome?

In Ellie's case, the biggest physical issue is low muscle tone. Because of low muscle tone, it was harder for her to learn to talk, to walk, to develop a good pincher grasp. She tires more quickly and has to work a lot harder than most other kids at pretty much all physical tasks, from feeding herself to pulling up her own pants or running down the street. (Walking and self-undressing were the two hardest parts of potty training for us. She still needs some assistance getting onto the toilet.)

Cognition is where it gets really interesting.

Ellie's pediatrician's practice sees about 80 kids with Down syndrome, so her doc has a great idea of norms within that community and can compare Ellie against others with her diagnosis rather than just against typically chromosomed kids, which is wonderful. Years of professional experience plus her personal experience parenting a child with Down syndrome have led her to some interesting conclusions.

About half of the kids she sees with Down syndrome, she believes, have above average intelligence. The rest fall below that line. Kind of like the rest of us. Rather than being an issue of mental retardation, she believes that a lot of the cognitive issues associated with Down syndrome are really serious learning disabilities.

That matches a lot of what I've observed in my own child. By one and a half, Ellie was clear that the baby in the mirror was her - she'd wipe whipped cream off her own cheek rather than the mirror baby's cheek - and she could accurately identify pictures of herself without prompting. (These skills usually develop between 18 and 24 months.) She has also always been really really good with names and with knowing which children at church or school go with which parents, a skill I'm still developing. Her pediatrician thinks her IQ - though hard to measure accurately, especially at this age - is probably above average, say 110 or so. This is not what I expected of a child with Down syndrome. (And it's not how she tests, either, without accomodations.)

Recently, I was at a workshop where I was learning about the file system, or bucket approach to memory/question response, which explains why kids with DS might take a little longer to find the answers to questions they're asked.

If someone asks me what I was for Halloween last year, I might tick through my brain's file system: Holidays/October/Halloween/Costumes. I do this so quickly that I don't really realize it's happening, but all that information is nicely categorized for me.

For a kid with Down syndrome, it's sort of like their file drawer has gotten emptied onto the floor and their notes are everywhere. They're picking up random pieces of paper and trying, desperately trying to find the one with the answer on it.

And that's why the reading program Ellie's in teaches sight words in clusters associated by category: to help the children learn to build their own file systems.

How cool is that?!!

Patricia Logan Oelwein: Teaching Reading to Children with Down Syndrome: A Guide for Parents and Teachers.


Amanda said...

That is really awesome. My girl still has some issues with reading vs memorizing and letters sometimes screw her up, but she's 4. I wouldn't have pushed her on any of it until this fall in Kindergarten, but Reception in England starts the year before our K. So she was learning it over there and she came home with the simple books and memorized the words so she could feel good about it when she tested in the morning. I'm not worried about it, so she's not. I think it's great that you found a program that will help Ellie down the line. From your posts and from meeting Ellie, I can tell she's a smart girl, as in she thinks through problems and doesn't just instinctually react all the time. :)

Jessie Mae said...

Wow! That's so interesting. I love learning about the different ways people's thoughts work.

ccw said...

I'm glad that the program is working well for Ellie.

From following your blog all these years, it has always been obvious that she is a very bright girl. She is lucky to have parents who realize that she can and is so much more than a child with Down Syndrome.

Beach/Vic said...

That reading pilot program sounds amazing and like it will work well with Ellie's specific learning needs. I have worked with and interacted with enough mentally challenged people to know that the labels that are ascribed to their different mental function are the most damaging. Once you're labeled, that's it. My sister in-law is a great example of someone who is mentally disabled but extremely bright. Her 'disability' has meant categorizing her into low IQ compartments and boxes and limiting her opportunities to learn and grow in ways that are accessible to her. She has always had such difficulty working because the work people give her to do grossly underestimates her intelligence. She gets bored, feels like people treat her as if she's stupid and then quits the job. It drives me nuts to see how she's struggled so needlessly.

Sorry. Rant now officially over.

Lady Liberal said...

SO SO SO fascinating!!!!
I love your pediatrician's take- and I believe it!
My niece (12-years-old) is a Downs kiddo. She's extremely bright- a quick sense of humor, very independent- in many ways like any other pre-teen. Her delays are primarily in speech and are more related to malformation of palate. She's also a little socially behind other kids her age, but I've often wondered if that isn't a product of how she's been treated and living in special ed classrooms.
Have I mentioned I think you're awesome?! Ellie is lucky to have a Mama who sees her potential through the labels. :)

bb said...

In light of the premiere of "Memory Keeper's Daughter", I thought you and your readers might be interested in my new film, "Strong Love". The film highlights how much things have changed since the 1970's. It'd be wonderful if you could post this on your site.

A recent review from the Down Syndrome News:
"Some scenes will make you cry, others will make you laugh. All in all, it's a picture of life full of surprises, challenges and joy."

We have posted a short excerpt from the film of Holly and Jon practicing their wedding vows if you are interested in previewing it. http://www.youtube.com/watch?v=tLFhP5olHvE

Strong Love is the story of world-class weight lifter Jon Shapiro and his childhood sweetheart Holly James, both of whom were born with Down syndrome. This documentary follows the couple over the course of three years, starting with their decision to get married. Their challenges, their triumphs, and their complex, sometimes surprising relationships with family and friends are at the heart of this inspiring film.

Please contact us for more information.

56 minutes

A film by Bonnie Burt

"Strong Love" tells the story of what happens when a world-class weight lifter and his childhood sweetheart -- both born with Down syndrome -- decide to marry.

thistle said...

Somehow I didn't realize that Ellie is just about the same age as my little cousin Anna, who also has Down syndrome. She's doing a similar reading program and they've been very pleased with it.

Psycho Kitty said...

V., v. awesome. Go Ellie!

Mary P Jones (MPJ) said...

Hi. I meant to stop by your blog earlier after your visit to mine, but my computer died. Still, better late than never. I'm enjoying poking around.

This is so fascinating -- the same seems to be true of kids with autism. The popular myth is that most are mentally retarded, but the truth is that because they have communication difficulties and most IQ tests are communication based (i.e. failure to answer is interpreted to mean the child doesn't know the answer, not that s/he knows but is not capable of communicating the answer), they are just not tested accurately.

Good luck to Ellie -- sounds like a cool program!