Monday, October 20, 2008

Why?

Honestly, I don't do this because I think I'm the best writer. I don't think I'm going to look up one day and be famous. I'm actually surprised when people let me know that they come here and read. All I have to go on are comments and those are usually from a faithful few.

So why do I do it?

For several reasons, really.

1. To vent. Selfish, yes, but I haven't lost my mind yet, so this must be helping.

2. To share photos/videos/updates with friends and family that live far away. (Yes, it makes me sad that most of them don't still don't visit the site and probably won't ever see this sentence.)

3. To enlighten, by dispelling myths and stereotypes, those that would otherwise have no idea about lives touched by Down syndrome.

4. To help lift the weight of fear from those that newly do.

5. To share in the sense of community that exists online in a way that is not accessible to me in real life.

6. To be an example of what a Black family that includes a child with Ds can look like. When I was looking 16 months ago, I couldn't find one. *waving* Hellloooo!

7. To play my part in moving this effort of awareness forward.

As you may recall, last week I posted a list of books/resources that I purchased in the initial effort to learn more about my daughter's diagnosis.

Since then, out of those that remained untouched, I have read one and started to read (then ended up skimming) another. [I've also found even more, but that's for another time.]

Whoa. I really was just buying anything and everything back then, y'all.

I say that because while the info in Differences in Common is good for the most part, it was published nearly twenty years ago. What the author was doing was groundbreaking back then, I'm sure. For people that wanted needed, desperately to feel that they weren't alone in this journey, I'm sure every word was devoured. I did like it in general, but then every once in a while, I'd be hit by something that just turned me off.

Again, that was twenty years ago. A lot, thankfully, has changed.

I'm not just talking terminology.

(Though the author seemed to feel that People First Language was not all it was hyped up to be, I'd still never turn down a chance to chat with her and see what she thinks now. Oh! I just found an article she wrote this year. Maybe there's hope for that convo.)

On the plane this morning, I pulled Our Special Child out of my carry-on bag. I read Foreword and the Preface, the Introduction and the first seven chapters even. But then I couldn't continue at that pace any longer. That's when I began to skim. And skim I did up until the plane touched down in Oklahoma City, all the way to page 286.

When I mentioned "awareness" in #7 above, I did so because I truly feel that the more that Ds is treated as commonplace, the better. In this book, Ds was called (in love, I'm sure) a "disease" - people thought they could catch it. There was much discussion in the beginning of the book about whether or not to place your child in an institution and, if you chose to do so, how to select one.

And what about EMR versus TMR? Know what that is? It's "educable mentally retarded" and "trainable mentally retarded," respectively.

*breathe*

In my parents' generation, children with Ds were determined to be TMR by default and, as such, unteachable based on their diagnosis alone. That's it and that's all. No one would teach them to read because they would never learn, thus children never learned because they weren't taught.

[Ahem. Wanna get your world rocked? Check out the 9 minute mark.]

Please don't get me wrong. I'm not bashing the authors. You see this was common, sought-out information not that long ago. The advances this community has made are due to people demanding respect - nah, simple consideration - for their family members, friends, and, in the case of self-advocates, themselves.

The more we know, the more we can do to make a difference. If one person that knows me reads this blog and raises a child a little differently because of it? Great. If someone is shown a new perspective and greets someone they never would have before? Fantastic. It's all about being aware. You don't know what you don't know. Tell a friend.

By the way, did you see Shawndi's comment from yesterday? Did your jaw drop like mine did? Doesn't her bright, beautiful daughter deserve a more thoughtful society, as do all of our kids?

We still have a long way to go.

We all can do better.

And that's why I'm here.



5 comments:

Tricia said...

Wow. The comment Shawndi got disgusts me beyond belief!

And I just want to say, whatever your reasons, I am so glad you blog!

sheree said...

whoa. That comment was just...whoa.

People are so SO uneducated. And not just about Ds. About LIFE.

Anyway, I agree about older books. I try and find the newest publications as possible. I just watched "Educating Peter" and "Graduating Peter" on HBO the other night and felt the same as you did when you read these older books.

We have come a long way and we will continue to do so ;)

hapagirlhapafamily said...

I once met a lady who's daughter was in her 40's and has Ds and she said that her daughter was TMR! I never heard those terms before until she said them and it was kinda sad because I never thought about Lillian that way.

Boy, if they thought that way about Shawndi's daughter, then Lillian really got screwed! OH, wait a minute, maybe that makes me have a little Ds too???

OH before I forget, I saw the gift you sent Lisa! Where's mine??? (hahahah Just Kidding) I'm not that selfish :)

jennifergg said...

yes, oh yes. we all can do better...thank you for helping make it so.

xo

Michelle said...

I'm glad you're here! and blogging! :) I think we are changing perspectives...even of people we're not even aware of who are reading our blogs.

And family members? Yeah I sent my blog out when I started it and only a small handful of them comment and/or lurk - same with IRL friends. Oh well!