Tuesday, September 30, 2008

Article . . . and my thoughts

http://www.cnn.com/2008/HEALTH/conditions/09/30/adult.down.syndrome/index.html

This article was sent to me by both my husband and my sister-in-law (thanks, guys).

On the surface, it's uplifting. A kid with Down syndrome making his way through life, and pretty happily. It's good to know that he is (and therefore my son can) attending college. It's nice to know that the life expectancy of people with DS has improved so much over the last century, and that treatment of these people by society has improved so much.

But I guess I'm a glass-half-empty girl at heart, I am sad to admit.

It bothers me that the life expectancy is only 58 - 60 for people with DS. It scares the crap out of me to know that, among all the other things Finn is at a higher risk of developing (autism, epilepsy, leukemia, etc.), he is also at greater risk of developing Alzheimer's some day (and from what I understand, people with DS who do develop Alzheimer's generally start showing symptoms about 20 years sooner than people from the general population who develop it). And if he lives that long, I won't be alive to take care of him. And yes, it even bothers me that the kid in the article works at Target. Why, oh why, does it seem like so many people with DS work at Target or the grocery store? Maybe this is a terrible thing to think or say, but I don't want my child to be limited to a job like that. Are those the only sort of companies that are willing to hire people with DS? Or is it simply that people with DS generally can't manage a job more complicated than that?

I realize that I'm getting ahead of myself. Worrying about the future is a dangerous undertaking for any parent, let alone a parent with a special needs child. Who knows what will become of any of us or our children? I know, I know . . .

This does bring up something else I've been pondering, though. I truly don't understand how it can be that ALL people with Down syndrome are intellectually impaired. Some people with DS are born with heart defects, and some are not. Some are born with intestinal issues, and some are not. Some have hearing loss and/or vision issues, and some do not. Some people with DS are born extremely healthy with no medical problems at all - and some are born with many health issues. So how is it that every single person born with DS is mentally retarded? Isn't it possible that some are not?

I recently read something somewhere that there are actually experts out there who theorize that not all people with DS are intellectually impaired, but that it has been the assumption for so long that expectations of people with DS are generally limited by this assumption, and so the ones who may not be mentally challenged never meet their true potential because they are assumed to be, and treated as, retarded and therefore limited.

Hmmm.

7 comments:

Snapdragon said...

Let's not forget good old "Corky" from 'Life Goes On'.

Not meaning to be flip, but Chris Burke who played him not only had that acting job, but is also in a band that I believe has paid gigs.

There have been a few films out in recent years featuring actors with various disabilities in them.

http://www.chrisburke.org/

HTH :)

Tara Marie said...

Not all are....my daughter has tested on the low end of 'normal'

But even with that, she has delays and speech inteligibility issues [mostly for outsiders to understand, those of us that are with her all the time, understand her clearly....or are so used to her enunciations that we know what words she is saying]

I think too much focus is put on a number, as in an IQ.....as from what I have learned on the short seven years that I have been on this journey, that most people with Down syndrome, actually exceed the general population on human relationships....a better or true friend you can not find {I'm not big on generalizing, but for me, I'm the happiest when I'm around people of all ages with T21]

I'm loving your sharing your journey.....and Sir Finnian is just precious and I'm thankful that you are sharing him with us all!!!!

Cleo said...

I believe in children with Ds. Lisa, I have faith that with our help they can reach their full potential ~

Jen said...

I really do believe that it's true that some kids with DS are not intellectually impaired. It's really all about stereotypes and expectations. I also think that speech problems make people think that a person is not as smart as he actually is.

I know what you mean about Target and the grocery store. I read this article, too, which was good for the most part, but that part bothered me the most. I don't want any child of mine to be stuck in a dead end job like that, no matter what their cognitive abilities are.

huggodsmile said...

Lisa, Hannah was recently admitted to the hospital. One of her nurses has MDS. I asked her to make certain, and the nurse was quite honest with me about her struggles and how hard she had to work to get her license. She wasn't working in a Target or a grocery store. She was a nurse! And she happened to be Hannah's favorite nurse-the only one she would smile at or calm down for. ((HUGS))

Jodi said...

I think your instincts are absolutely right. Besides, the statistics you're looking at are composite numbers so does anyone really know what the life expectancy is for a child with Ds who doesn't have any of the other major medical problems? I'm not sure they do. And like you said, it's just way too early to see the effects of early intervention and every other advance in the last 30 years. The 50-60 year olds would have been born in the 1950s when institutions were still the norm.

I think people with Ds have many diverse and different jobs, but the jobs at Target and the grocery store gain public attention.

P.S. I miss our summer playdates! We'll have to try to get together soon.

Hector and Jennifer Varanini Sanchez said...

I too believe in the HUGE potential of all children with DS. After attending the lectures at the Institutes for the Achievement of Human Potential, you realize how amazing the human brain is and is capable of. Children with DS reading as early as 18 months old and loving every minute of it :)!!!