Wednesday, October 15, 2008

An open letter to Mr. “End Down Syndrome”

I have a feeling that you have no realistic view of how independent and “thinking” a regular person with Down syndrome is. Again, my daughter was classified several years ago as having a low range of “mild” retardation, the norm for many children with Down syndrome. But she has had a good education. She is all of 14 years old.
So let me describe just a few minutes of this morning with her.
Ricki got up, bathed, and dressed (with clothes she had set out the evening before), entirely on her own. I pointed out that her vest was a bit crooked, and she changed it. [I made a mental notation that I should spend five minutes teaching her to check her appearance in the mirror after dressing, so that she can catch these mistakes herself.] She went to the kitchen, and seeing that her father had made some rice, took some, added milk, and heated it up in the microwave.
As I entered the area, she said “Mom, you should have some rice! It has calcium!”
-“No thanks, I’ll have my calcium with my coffee with milk.” She looked a bit puzzled. “Ricki, the calcium is in the milk, not the rice.”
“Oh, I see.”
A few minutes later she came to see what I was doing at the computer. She pretended to stick her finger in my coffee, and I remembered that I had not as yet given Ricki her daily dose of Concerta, which helps control Ricki’s ADHD. I smiled to myself, thinking how most of Ricki's problems are related to her ADHD, and not her low I.Q. [I wondered if you, Mr. EDS, would also advocate killing babies with ADHD if it could be detected. If so, maybe life would have been “easier” for their parents, but we would have missed out on a lot of the “doers” of the world.]
Next Ricki saw her new pink dress in the laundry basket. “Oh Mom, is it ready?!!?”
-“Ricki, you are not changing clothes. Today is cooler, save this dress for a warmer day.”
“OK, OK, MOM!! (teenage exasperation…)
I sent her to clean up a bit in the kitchen. Afterwards, she took out a book to read, albeit to an “imaginary friend” (much like a younger child). [Later, on going outside, or when her real friends show up, the imaginary friends disappear.]

Now please tell me.. Where is the “monstrosity” here? The “suffering”?
And to prevent a birth like hers, you would run the VERY risky path of telling parents who they can have a “choice” with, and who you have decided is not worth living?
Who gives you the right to say that my daughter’s life is not worth living?

4 comments:

Terri said...

Nothing gives him that right.

Nothing at all.

He believes he has superiority that gives him authority--clearly, he is wrong.

Shawn said...

Well done! As a mother with a child with Down syndrome, I applaud you! Our son is the love of our lives. My husband and I are grateful for the opportunity to raise him! Challenges and all!

The Babysitter said...

No one has a right to say such a thing! that is quite obvious.

About Ricki, does she ever get tired of you teaching her things, and then she refuses to listen? cause it seems like many times you write about how you have to go over things with her, and I start to wonder if she's open and accepting to it all. She seems like she listens and everything.

A Living Nadneyda said...

Wow, he must be perfect himself. Lucky him. As for the rest of us imperfect people...