Friday, March 6, 2009

“If I Knew Then What I Know Now” -Down syndrome and Adult Choices

Before Ricki was born, I had experienced exactly 6 exposures to people with intellectual disabilities, four of them to people (or about people) with Down syndrome:

1. One of my mother’s friends had a child with Down syndrome. I saw him from afar maybe once. When we went to their house each year to watch a TV special (we had no TV for many years) he was no where to be seen. My mother told me that he was not expected to live beyond twenty.
2. My neighbors had an older teen with intellectual disability. He was a nice fellow, worked, and coached a children’s baseball team.
3. My nursing school textbook had an article on Down syndrome. It was thoroughly negative, and the accompanying picture of a squalling infant with Down syndrome was no better. None of the lovely pictures you see today.
4. When in nursing school, we saw two institutions for the care of the intellectually impaired, including several children/adults with Down syndrome. One was a terribly atrocious state institution (which was closed shortly afterwards), and one was a state of the art private facility for educating children with intellectual impairment and/or autism.
5. I roomed for about a year as the live-in “emergency help” for a couple where one partner had learning disabilities, and the other mild intellectual impairment. They were a warm and likeable couple, and I got along with them very well.
6. An acquaintance of mine had a baby with Down syndrome who was ill and died. (Although I never really saw this child.)

So in many ways I was lucky. Because even though I had been given several negative exposures to Down syndrome, the long-term exposures I had experienced (2 and5) were positive. Nevertheless, when Ricki was born, many questions filled my mind: What is the life expectancy today for people with Down syndrome? Can she get married? Is it ADVISABLE for her to get married? What can I expect? How do I travel this road?
I called my acquaintance whose baby had died, and asked her if by chance she still had any books on Down syndrome. When she told me that she had never had any, I was floored. Absolutely and totally flabbergasted. I immediately wrote my mother with a plea: send me some English materials on Down syndrome!
And as I read more and more materials, and gathered information, I started mapping out Ricki’s life for her. I still was querying myself on whether it was expedient for her to marry or not, when I came across two books that radically changed my viewpoint. Both today are out of print, but if you can buy them used, or obtain them at your local library (on loan from another branch?), they are both worthwhile, informative, and entertaining reads.
The first is Retarded Isn’t Stupid, Mom by Sandra Z. Kaufman (Paul Brookes Publishing -1999). In this book, the author describes her daughter’s fight for independence, and the results. Her daughter is a spunky character, similar to what I was seeing in Ricki. It suddenly hit me that at age 22 Ricki was not going to necessarily acquiesce to me running her life. As a matter of fact, it was (is) very highly unlikely.
A second good look at life of a young adult (older teen) is Adventures in the Mainstream by Grg Palmer.(Woodbine House -2005 – ISBN 1-890627-305) First, this book is interesting just by itself. In addition, in its pages you see how even a high functioning teen like the author’s son, Ned , have their own quirks that the parent really is not able to control. And how this child can be helped to succeed and prosper.

So what message do I have to say, “If I knew then what I know now”?
Don’t worry so much about your child’s future. For sure worry enough to give him an excellent education, and to push him to learn independence skills. But don’t fret about it. Because it is your child’s future, not your choices. The big decisions should ultimately be his own


Terri said...

I had very little exposure to people with Down syndrome except to know a neighbor girl who stayed home... in college I volunteered for a religious ed. program. It was a good program with good people. Little did I know...

I love knowing that my daughter will be the biggest influence on her own life!

A Living Nadneyda said...

When I was a kid I had a regular babysitter with DS. She was a neighbor, living with her parents, going to college (special studies) a couple times a week, and very attached to her pet parakeets. I think that knowing her, and having her as an occasional authority figure, went a long way in forming my life-long attitude toward others and the respect we should give them, however and whoever they are. It went way farther than words ever could have.

(I also give my mom credit, especially considering what a generally over-protective parent she tended to be. She definitely was not following the status quo).

Unknown said...

thank you for this post!

and -- an aside -- i'm embarrassed that i didn't realize you had also written about dopey. i ordered palmer's book this afternoon. thank you for that, as well.

i hope you had a wonderful purim -- it's one of my favorite holidays.

rickismom said...

Amy, you came up with the question on your own (and I only passed on something I had read).