Tuesday, October 23, 2012

Down syndrome and the brain

I asked if there were any questions you had regarding Down syndrome, and this was a great question to ask:

"I am curious about Down syndrome and how, if any, it affects brain chemistry, comprehension, and skills (are there just delays age wise, lags, new ways of doing the skills, or incomplete skill learning). A child we know has a specific mental disorder which effects skills (not saying DS is a mental disorder, but only comparing this to how the brain is effected and therefore skills) and I have been very interested in the ins and outs of it."

First of all, this is probably the greatest challenge when any parent has a kid diagnosed with Down syndrome, because let's be honest, we all want out kids to be smart. This is also the reason why we fight so hard when people flippantly use the word retarded. This is why talking about our children having an intellectual disability is not our favorite subject.

However, putting emotions aside, yes, most people with down syndrome have a certain degree of an intellectual disability. Here is the thing, people with Down syndrome learn different, and we are just beginning to understand how their brain functions.

People with Down syndrome also have hypotonia (or low-muscle tone). This affects much of learning, since we have muscles...everywhere! Think about all the learning babies do when they begin to crawl and move around, think of how curious toddlers are as they begin to walk. For kids with Down syndrome, because their muscle tone is low, these things happen later. So all the things that kids learn as they explore, will happen later only because that is when their bodies allow them that freedom.

Low muscle tone also affects fine motor skills. While other kids are holding a crayon and coloring, it takes a lot more work for a child with Down syndrome to have the strength to hold a crayon properly and have the precision of small movement to do things like color or trace letters. So imagine school, where  a kid with down syndrome is already lagging behind, not because they don't know their letters, or even sight words, but maybe because writing is so hard and everyone else is going so much faster. Frustrating, don't you think?

And there is speech. Did you know that your tongue has lots of muscles? There are more muscles in your mouth and tongue and face than anywhere else. People wrongly assume that because my kid has poor speech, that she is not smart. that she doesn't understand, or that she doesn't get it. let me assure you, she does! For example, my daughter is self-conscious about her speech, so she chooses not to talk to other people, because she knows they won;t understand her. To me, that is a sign of a smart kid.

We are just beginning to tap into the potential of individuals with Down syndrome. So while there is a lower IQ, we are beginning to see that it is not what we thought it was. More and more people with Down syndrome are breaking stereotypes. I love Pablo Pineda, a Spanish man with down syndrome that has 2 college degrees he earned the hard way. No special curriculum, no pat ion the back. it took him more years than some people, but he did it! He holds a teaching job (yes, like a real one!).

So is there a cognitive difference. Yes, there is. Is how smart we are (meaning our IQ) what determines the value of our lives? Let's all hope not, because that means that there would be a lot more people with more "value" than us, and that is just not a right way of thinking.

Does Nichole have more challenges than her oldest sister? Yes she does. But, she doesn't have to do it alone, we are with her every step of the way, and it is not a burden, it is a pleasure, it is a joy, it is so different than I ever imagined it would be.

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