Tuesday, October 2, 2012

Down Syndrome Awareness Month!

October is a busy month! Down Syndrome Awareness Month, Breast Cancer Awareness Month, Domestic Violence Month, Pregnancy Loss and Infant Loss Month, Eat more Bacon Month. ok I made that last one up. We all know eat more bacon is EVERY month. But I want to focus on Down Syndrome Awareness, because, to be honest, that is something I never thought much about. Why not the others?

We're all aware of breast cancer and see the pink ribbon everywhere. We know to go get our mammograms regularly. Right??? When was your last one? GO DO IT! 

We all know domestic violence is horrible, and the key to that is raising our sons to respect women, and raising our daughters to watch out for warning signs that their guy might not be who they first expect, and to get out at the first inkling of an idea.

Pregnancy loss and infant loss is another terrible situation that no parent should have to face. I've seen too many families lose babies, and it is heartbreaking. 

But there is another group of babies that unfortunately, don't even get a chance to ever be with their families. These are babies diagnosed with Down Syndrome. Did you know that 90% of babies diagnosed with DS while the mother is pregnant get aborted. NINETY PERCENT. The doctors tell the families that it's the easy way, it's better for everyone. It's a lie. Parents gets scared, not knowing much about DS because they haven't had much, if any, interaction with a child or adult with DS. 

The number one fact to know about a child with DS is this. Brace yourself, because it's a doozy. A child with DS is....

Just a regular child.

Yep. There's nothing scary about them, nothing weird or different. They're just kids. They have every bit as much love to give as any other child. So why are people so scared to have a child with DS?

 Here are some medical things the parents and child will/may have to deal with. Some, but not, all kids with DS, have heart defects. The chambers of the heart (4, in case it's been a while since biology class) may not be fully divided, and the doctors go in and make a wall to divide them. It's actually a very simple procedure! Ok, so that's covered by insurance, done and over with. Once it's fixed, it's fixed. They may have a lower level of hearing. Wow, scary right? Not! 

Many times they need glasses. Geez, really? How awful! Look around you at the number of people wearing glasses.

But you know what? When a parent is told their child may have DS, they don't think about these things. What's the first and biggest issue they face? The fact that one, their child may not develop a level of intelligence that most adults have, and two, because of this, their child will never be able to move out. And I think that's the kicker. It's not about the child, it's the notion that the parent will be "saddled" with the child forever. side note rant here, not just for parents of children with DS: Let me tell you something. If you're a first time expecting parent, and you think for one second that your responsibility as a parent will end at 18 when your child moves out, you are DEAD wrong. Your responsibility will never end, no matter the physical, emotional, mental capabilites your child has. It's been said, and is so true, "the decision to have a child means that for the rest of your life, your heart will live outside your body". ok side rant over.

Please please please, if you are pregnant, and find out through testing that you might have a child with DS, go spend some time with someone that has DS. Wherever you are, there are support groups for parents, lots of resources available. If for whatever reason you truly can't feel like you could parent a child with DS, don't abort it! There are families on waiting lists that WANT to adopt a child with DS. At any given time in the U.S. there are approximately 200 families waiting. And you wouldn't believe the number of families that are adopting children with DS internationally. Around the world, children with DS are put into orphanages, and then mental institutions, because the parents don't realize that they CAN do this. Most children in Eastern Europe that have DS are transferred to metal institutions at age 4. While your child is starting pre-K, with their hair in pigtails and cute little outfits on, the child in EE has her head shaved (to prevent lice) and stuck in a crib to lay there forever. No one to love them, sing to them, teach them to read, anything. 

But they don't have to stay there. I've seen people who, after having biological children diagnosed with DS, make the conscious decision to have another child with DS, through adoption. If DS was so scary, would these families do this 2, 3 even 6 times? 

Take a look at Reece's Rainbow to see how you can help a child with Down Syndrome. 

And one more thing. Well, two more things. Let's make sure we see children as children first, not identified as their disability. There's a fancy phrase I learned in my Exceptional Child class, called "people first terminology". That's just a $5 phrase that means BE NICE. How would people classify you if they looked at your features or limitations first? Oh, that's the fat chick (yeah, that would be me.) Or, take your item to the wrinkly lady to check out. The Ugly man will fix your car. How offensive would that be? We would want people to use our names, our best features, right? Don't all people deserve that? No matter your disability, your race, whatever is unique about you, you're a person first and foremost. 

So don't call a child with DS a Downy, Downs, anything like that. Call them by their name. If it's relevant to the situation, then yes, it's fine to say the child has Down Syndrome. But above all, DO NOT call them retarded, or a retard, or any other offensive term. Let's get rid of those words altogether. Yes, we all know that used to be the term everyone used to in reference to someone with an intellectual disability. But that term has gotten twisted and redefined, and now it's just offensive to the person themselves and to the people that love them. It's used in a joking manner by lots of people (even I did, before I learned not to) to call each other stupid or goofy. Don't even do that. Let's get rid of it altogether. My kids are weeding it out of their vocabulary because they see how wrong it is, and they are calling out their friends who do it. 

Give a child with Down Syndrome a chance. See them as a CHILD, not a diagnosis, and more than likely, they will brighten your world and help you to see it as you've never seen it before. Honestly, I think in that extra chromosome they have, there's a lot of love and sunshine. Don't we all need that?

This month I'll be posting lots of pictures of children available for adoption, all of which have Down Syndrome. I'll feature some families that have chosen this wonderful path, and tell you what their life is like. It'll be interesting, I hope, so stick around!

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