Wednesday, May 14, 2008

Down Syndrome Awareness

I have seen some people balk at the words "special child", as if they were thinking someone with a mentally or physically handicapped child thought their child was more special and deserved more love than other children. I could see how that might rub people wrong when they don't know what is meant by that phrase. When you think about what is involved in raising a handicapped child, you would realize that it just means that they have a special set of needs from us. Like extra attention and time for everything they need to learn that normally wouldn't take as much work, not only from us family members but also from themselves. And special patience to deal with their slow progress (and not being able to let go of bad habits and behaviors). They need advocates in order to win community acceptance. They need impossible answers from us about why they may never be quite ready for the natural processes of life, like driving a car, buying a house, and getting married (or achieving Power Ranger skills!). No matter how old they are they will always need our extra involvement in their daily life, not only to make sure they remember (or need help with) grooming, chores, homework, connecting with friends, getting to work on time... but also to make sure they don't just sit on their bed all day long, or take off on their bike and forget how to come back.
So "special child" or "special needs child" doesn't mean we elevate them above the specialness of every other child, but that they will always require more, or special attention from us. And as our other children, whom we proudly (though reluctantly) see going off on their own so much faster, making their own lives, we secretly relish still having one to be the companion of our old age.
Some people don't want to have to come across special needs people in public, maybe because they don't know how to act around them. I take my son with me most of the time when I'm out in public, partly so he will feel comfortable in our community, and partly so the community will become comfortable seeing people that are different from them, and learn acceptance. There are many cashiers that are used to seeing Stephen with me and talk to him regularly. When he's not with me at times, they ask me what he is doing or is he okay? Ever since he was a baby people have approached me and said it is nice to see someone like him in public (I know they don't know how else to express it) because they also have a child or relative with a handicap.

The more that special needs kids are involved with the public the more they can be accepted, and even enjoyed, by those who get to know them. That is why there is a Down Syndrome Day (March 21st), just to remind our communities that they want to be accepted too. It isn't DS Day today, but I found a great video (below) that I can't wait to share. It's made by Renee from Life With My Special K's and she has given me permission to use it. There are lots of other great videos on You Tube but I don't want to over-do it because this one is 15 minutes long, with some very nice songs too, so I'll post some of them later.
Also, here is a new Down Syndrome blogger, (check out the post on "Dreams") and you can find many others through Google, or these bloggers blog rolls.

9 comments:

weelass said...

Stevie IS special. We love having him around.

Cherdecor said...

Stevie looks like a sweet boy and I am sure even though he has special needs, he brings you lots of love and joy! I have heard that those children are very loving.

Michelle said...

what a great post - and you're so right about being in the community and acceptance.

Nancy said...

You son is so cute! He is simply a doll. And the video put a smile on my face the whole time I watched it. My daughter does not have Downs' Syndrome, but looks as if she does. She was tested for it 19 years ago and I wonder if perhaps she has a form of Down's that was undetectable back then. At any rate, she has a very sweet spirit; one I admire greatly.

Thanks for sharing and it was good to visit your blog.
Blessings,
Nancy

ErinOrtlund said...

Down Syndrome awareness is so important. It's great to have Moms like you share what it's really like to raise such a special child.

Mommy to those Special Ks said...

Thanks so much for posting this! :) One of these days I need to update it... when I do, you can be sure I'll be hitting you up for pictures of Stevie! ;)

Karla said...

:) :) :)

HOPE said...

Thank you for stopping by....I will be back to read this post on Downs...if you look over my blog watering wells of hope...it began as the story of my son Stephen who was a Down's child. I know you will be blessed reading God's wonderous hand in his short life.
(it is currently the story of my breast cancer journey..but scroll down to the beginning of the blog)
God bless..
HOPE

HOPE said...

Thank you for this sweet tribute...it brought tears to my eyes...

HOPE