Sunday, May 31, 2009

What Are You Talking About?

I enjoy blogging and get a lot out of it (the daily exercise, record of events, testing and development of my thoughts, conversation, letting family and friends know what's going on, etc.).

But there are some interesting side effects, too.

Like being recognized occasionally by local strangers who read the blog. And people I do know sometimes knowing me a lot better than I know them, which makes for an interesting dynamic.

There's also the balancing act of what to blog and what not to blog. My husband, my mother-in-law, my sister, and my husband's sister's husband all read this blog from time to time. (Hi, Paul, Carol, Grace, and Rob!) So I sure can't complain about them. (Just kidding! You're perfect!)

But, more seriously, I did lose a friend over this blog last summer. I wrote a did I handle this situation OK? post about the friend, without giving any identifying information, of course, but it really really really upset . . . her. So much so that s/he never talked to me again. Which was weird because I didn't know why my friend cut off all contact with me (and my husband, and my kids). This person was a great favorite and frequent babysitter of my children. They did stop asking after him eventually.

All this is build-up to say that I was at a wedding this weekend and someone said something really . . . wow, awful to me. And I kind of want to blog about it, but I'm also inclined to respect her privacy. Unlike with last year's debacle, this person is not really a friend, more a friend of a friend, but in my grand old age (ahem) I am less inclined to stir the pot.

So in lieu of all that, I will close with a public service announcement.

35 years ago, babies with Down syndrome were still routinely institutionalized. It was thought that they could not learn, and they were treated accordingly. It took quite a while for early intervention services and inclusive classrooms to catch on. In fact, I won't consider that process complete until kids raised in inclusive classrooms are the ones running the show, and we are not there yet. Until then, a lot of people with Down syndrome won't be living up to their full potential. Expectations, expectations.

Still, huge advances have been made.

Scientists think they might have treatments for the cognitive effects of Down syndrome in the next several years. For real! (Estimates might have adjusted since, but when I was pregnant with Ellie the projection was that treatment would be available by the time she was 9 years old.)

Aside from that, researchers have been learning a lot about what actually does happen in the brains of people with Down syndrome and have learned that most people with Trisomy 21 have higher IQs than we previously assumed. In fact, some have average or above average intelligence. And a lot of the cognitive issues kids with Down syndrome struggle with in school are more like significant learning disabilities than "mental retardation."

Kids with learning disabilities can and do learn, especially when they're taught in different and targeted ways. That's happening now. And it's working for lots of kids.

The other side of all this is physical health, and it's improving dramatically, too. Surgical interventions are improving all the time, and correspondingly life expectancy and quality of life for people with Down syndrome are rising. One of the most common and scary health complications for people with Trisomy 21 is heart defects. (Is heart defects? I hate that ugly sentence.) The biggest of these is Atrioventricular (AV) canal defect, which occurs somewhat less commonly in kids without an extra chromosome. But it's also harder to treat in kids without Down syndrome! For kids with T21, the surgery - performed in infancy - has a very high success rate. Ellie's not expected to have any long-term effects from her surgery, which was completed when she was 12 weeks old. I expect her to live a long and healthy life.

Having Down syndrome - or having a kid with Down syndrome - is not easy.

But neither is being or parenting any other kid.

Too often our opinions about people with Down syndrome are based on rumor, anecdote, and antiquated information. Today's realities are far different from those of 10 years ago . . . or 10 years from now.

And I'll leave it there for now.

Good night, and good luck.


RobMonroe said...

(Hi Sarahlynn!)

Feel free to talk smack about me - I had a conversation with a friend at church about losing friends by saying things. In our house we have decided to ignore smack talk as much as possible. You could probably embarrass me publicly (wow does that guy go to bed early, and snores so loud the baby monitor began to smoke!) but you can't get rid of me. Promise.

I have tossed around the idea of an anonymous blog recently. Too many of my pastor-friends read my blog. I don't mind that pastor read my blogs, I have an interesting relationship with clergy, but they are, in a roundabout way, my employers. My blog address has been published in our official Presbytery newsletter. Makes it hard to be down on my incredibly scattered boss when people would be able to peg me on it, and probably get me fired, pretty quickly.

On the other hand, I'm not diligent enough to update my blog three times a week, so why would I start another? :o)

I look forward to advances in research and treatment for all children. Four years from now would be awesome, right?! :o)

Kathy G said...

I was not aware of all the advances in Down Syndrome research. Thanks for educating me today.

Orange said...

Look what restraint you have. Not only are you not calling someone out publicly for a horrible or ignorant remark, but you didn't even take her out to the parking lot for a butt-kicking.

Mommy to those Special Ks said...

But I REALLY want to know what he said to you! LOL The sad thing is, kids with Down syndrome in other countries are STILL being institutionalized! *sigh*

Sarahlynn said...

Rob, I've got no smack on you. I started an anonymous blog for a while but never kept it up. Too much work! I definitely see your problem, though.

Kathy, you're welcome! I think a lot of people aren't. : )

Orange and Mommy to those Special Ks, I think I still can't believe I heard what I did. I'm still thinking that surely I must have misunderstood.

It was a value of life remark regarding use of "resources" for medical treatment for people with disabilities.

See? Impossible that someone really said that to me, knowing about my daughter. I obviously misunderstood. Surely.

Orange said...

Sarahlynn: *eyes bugging*

Honestly, I don't know why society blows resources on thoughtless jerks. Why even send them to school? What's the use? I mean, we can vaccinate them because of herd immunity concerns, sure, but can't we find a place for them to all live together and fester in a state of neglect? For the good of society. Did Darwin say there was a survival advantage for thoughtlessness?

Megan said...

I have never bought the idea of IQ testing. Even, you know, *before*. And now. Yeah. IQ testing is bogus. ESPECIALLY for those who learn differently. It's been proven. Be it ethnic differences (rote testing is filled with ethnic biases) or wording issues...they just don't give accurate information. And that just leads to lowered expectations. Which leads to lower achievements. It's a vicious circle!

Sarahlynn said...

Megan - exactly!!!

Orange, thanks for that.