DS Advocacy & World Down Syndrome Day

YESTERDAY was World Down Syndrome Day! I was busy running in my Down syndrome circles — attending the DSAF conference on Best Practices in Educating Children With Down Syndrome held at LIU/CW Post and meeting other families who have children with Down syndrome at the Rockville Centre St. Patrick’s Day parade (on Long Island) as has become our annual tradition. As such, I didn’t get to post yesterday.

BTW – World Down Syndrome Day is held on March 21st every year — chosen because 3/21 represents 3 copies of the 21st chromosome. This is also the reason why you’ve seen more posts from me this week regarding Down syndrome rather than my usual Happiness Project posts. I’d say things will get back to “normal” this week — my usual posts a day or two late (as usual) — but the boys are scheduled for tonsillectomy/adenoidectomy surgery this Friday so this will probably be a crazy week as well. I feel like Dory in Nemo… “Just keep swimming. Just keep swimming. Just keep swimming, swimming, swimming!”

OK, so back to Down Syndrome Awareness then — a day late and more than a dollar short! Today I’m going to share interesting and/or shocking tidbits of information I’ve gathered from my life, research, friends and the DSAF conference I went to this past week.

  • The National Institute of Health (NIH) has not sponsored Down syndrome research since the development of the prenatal test to identify the presence of Down syndrome in a fetus. To me, that means they think they’ve cured or rid the world of Down syndrome via this predictive but fallible and not-all-encompassing test.
  • 92% of fetus’ diagnosed with Down syndrome are terminated in utero! That still leaves 8% who are born and others who are not diagnosed. So, Down syndrome continues to exist in the world. Why? Because not everyone chooses or has the opportunity — and no one can be forced — to take this prenatal test. Because the test is sometimes wrong… resulting in the birth of a child with Down syndrome or the termination of a fetus without Down syndrome. And, because the test results do not dictate the parental choice to continue the pregnancy or to terminate it. (Thank God!)
  • The physical and cognitive abilities of an individual with Down syndrome vary widely… just like the physical and cognitive abilities of an individual without Down syndrome.
  • My boys, Brian and Michael, have Down syndrome… But, they are not mentally retarded (per their EI and CPSE standardized test scores AND as determined and communicated to me in writing by the state of NY). As a matter of fact, in every aspect of development, my boys are “in the normal range” for their age.
  • My boys were declined placement in an integrated classroom in a renowned, but still segregated, special education setting. In my opinion, this was because they have Down syndrome. Clearly, the decision was NOT based on their evaluations and test scores or on their cognitive ability. AND, I was told that the decision maker “tried very hard to disregard their diagnosis of Down syndrome when making [her] decision!” Well, she failed! In the big picture, that means, even within segregated settings, children with Down syndrome may be further discriminated against and segregated from other special needs populations.
  • New York State is the 5th MOST SEGREGATED state in the US when it comes to individuals with disabilities. And, to make matters worse, Nassau County is the MOST SEGREGATED county in the state of NY when it comes to individuals with disabilities.
  • I had the pleasure of hearing Brooklyn College student Lindsay Belnick speak at the DSAF conference I attended this past week. Lindsay is a brilliant and provocative advocate for people with disabilities who aptly compared the segregation of people with disabilities in her high school — who were not permitted to use the cafeteria, the school’s front door or to participate in after school activities — to separate black or white drinking fountains! Things are just beginning to change at her old HS thanks to Lindsay’s efforts!

The segregation of individuals with disabilities — including Down syndrome — is prevalent in all of our communities, schools and work places. Unfortunately, as with the civil rights movement, it appears it is going to be up to those being discriminated against, and champions like Lindsay, to fight for the cessation of such segregation. That means ME! That means my sons, Brian and Michael. That means my family, friends and neighbors! And, that means YOU!

Given the current economic situation and budget deficits our local, state and federal governments face, desegregation makes sense. It costs more to build and/or continue to run segregated educational environments than it does to offer support within the integrated environment. States like Vermont are ahead of the curve, including all children with disabilities in their public school system rather than supporting an infrastructure of segregated schools. Research shows that those students with disabilities who have been fortunate enough to be included with their typical peers in educational and social settings are flourishing on every level.

WHAT CAN YOU DO? Advocate on behalf of individuals with Down syndrome and/or any other disabilities suffering from discrimination and being subjected to segregation.

I have chosen to take up the torch by stepping up my advocacy efforts in the following ways:

[1] I recently volunteered to take on the role of Parent-Member within my school district’s CPSE division. As such, I hope to help other parents of children with special needs navigate our segregated educational environment and to help them gain approval and support for educational integration if they choose this for their children.

[2] I have also recently begun the process of starting a parent/child support group for local families who have children with Down syndrome. I’m doing this because no support groups exist in my area. As you’ve probably guessed I’m in Nassau County, NY. Collectively, we, the families, need to be able to pool our information regarding health, medical and developmental issues as well as education and socialization choices and share it not only with each other but with families who have received new diagnoses of Down syndrome in our community. We also need to encourage, support and recruit for each other’s local advocacy and educational desegregation efforts. Watch for more here and on Facebook for announcements regarding our first meeting.

[3] In addition, I’ve increased my DS Advocacy speaking engagements to include 5 local colleges and will continue to grow that advocacy requesting larger and more diverse audiences at the colleges where I currently speak as well as expand into other colleges and arenas (perhaps into the High Schools, Middle Schools and local medical community).

[4] And, finally, I will continue to include my children — Brian, Michael and Olivia — in my advocacy efforts as well as in the wonderful advocacy events that exist already, preparing them to become self-advocates/advocates for people with Down syndrome too. As young as they are, they are already fantastic ambassadors for people with Down syndrome. I intend to nourish their natural talents in the hope that they embrace the notion of self-advocacy/advocacy on behalf of people with Down syndrome in the future.

Got any other ideas for me? Got any ideas for yourself? Need help getting some desegregation advocacy effort you’re working on off the ground? Let me know and I’ll see what I can do. No, I don’t have a magic wand, but I’ve got a mouth I’m willing to use for this cause and I know a few people. You never know! Your idea might just be the right thing to finally rid ourselves of our separate drinking fountains.


About Maggie

I'm a stay-at-home mother of 3 children including a 15-year-old daughter, the Old Soul, and 11-year-old identical twin boys who've been blessed with an extra 21st chromosome (aka: Down Syndrome). I happily spend my time doing all that I can do -- breaking the proverbial box wide open -- to foster my children's development and then sharing what I learn with you through this blog.
This entry was posted in Conference, CPSE, disabilities, Down syndrome, Down Syndrome Advocacy, Down Syndrome conference, Down syndrome research, DSAF, early intervention, helping others, National Down Syndrome Day, NIH. Bookmark the permalink.

One Response to DS Advocacy & World Down Syndrome Day

  1. Robin says:

    What a wonderful blog…..Your posts are filled with important, inspiring and insightful information.It’s been a joy to read……..and the cause of a few tears too.Hope your day (and Brian’s, Michael’s and Olivia’s day as well) was a beautiful one.

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