Wednesday, November 16, 2011

Thoughts and Rants!

There is an article that hit the press yesterday.  It'sbeen  all over facebook so if you have a child with Down Syndrome and Facebook, you have seen this article.  For those of you that haven't seen it, let me catch you up to speed.

Here is the article in it's entirty if you chose the long version:
http://www.usatoday.com/news/opinion/forum/story/2011-11-14/blood-test-down-syndrome/51202078/1

It is written by a genetics physician and is very well written. He, himself, has a sister with Down Syndrome.

 He stated the company Sequenom announced that with a simple blood draw at 10 weeks of gestation, a pregnant woman can now learn with near 99% accuracy whether her fetus has Down syndrome.

He goes on to share a survey that he and his colleague conducted and revealed that 99% of parents say they truly love their son or daughter with Down syndrome; 88% of brothers and sisters say they are better people because of their sibling with Down syndrome. People with Down syndrome themselves spoke up, too: 99% are happy with their lives, and 97% like who they are.

The other part of the article that got my attention was that he states, "No longer are people with Down syndrome "poor things," "sweet souls" or "retarded citizens." Instead, they and their families have claimed fulfilling lives, rich with "typical" life experiences"

Now for my two cents on the issue.

I am frustrated, saddened, irritated with this world's (and yes this is a world wide problem) obsession with the "perfect" child.  For arguments sake, Molly is actually more perfect that I will ever be!

Let me point out the obvious.  Individuals with Down Syndrome are not a menace to society.  They are not non-verbal, low functioning, sickly little beings.  Yes, they do struggle with speech, walking, and have a list of health issues but so do so many other kids without 47 chromosomes! 

I have said it 1000 times; Molly has enriched our lives and the lives of all that are blessed enough to know her. We have learned to enjoy the small things, slow down, and enjoy!

 It has been brought to my attention more times than I even care to mention that when an ultrasound reveals a problem and the child may have Down Syndrome, they are very quick to remind them that the pregnancy can be terminated. 
 
 As the educator at work says, "Knowledge is power...Only if you share it!"  So why don't these OB's refer these parents to me, to someone who has a child with Down Syndrome to educate them on what it means to have a child with Down Syndrome. This is in addition to what the article states of giving booklet, Understanding a Down Syndrome Diagnosis, with fair and balanced information for expectant couples. I am not sure that my community does this but I am destined to find out.

When will the world realize that it is not a freaking death sentence to have a child with a disability?  When a child with Down Syndrome is born, I literally cringe when I hear someone say, "oh...that is so sad" or "oh...that is too bad".  They have no idea what you are saying.  I realize that it is just his or her ignorance talking but I do have to count to 10.

OK. I feel better now.  Off my soapbox.

For those new to my blog or just want to re-watch the most wonderful video about having a baby with Down Syndrome. Yes, it's true.  It is the THIRD time I have put this on my blog but I just love it.  So much that deserves repeating...

10 comments:

Becca said...

Well said, Tracy! Ugh, this new prenatal test has me so wound up. I love that - "Knowledge is power, but only if you share it!" Exactly.

stephanie said...

I know I should post too, but I'm still so stinkin mad I have to wait til I can post without swearing!
And this video was well worth repeating! over and over! i just don't know how to gently pound it through peoples heads that our kids are freakin magnificent!!!

mr usa brat said...

Very well written post my friend, let's all treat fair and nice all people with down syndrome.

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Kate said...

I stumbled across your blog and was drawn in by the mention of Down Syndrome. I value your viewpoint surrounding the blood test. I wrote my own recently when the blood test became legal in the Netherlands. I enjoyed reading what you had to say and I hope many read our words of wisdom.