Thursday, March 21, 2013

World Down Syndrome Day - A Mom's Perspective

Today is World Down Syndrome Day, a day we recognize people who have an extra 21st chromosome - some call the love chromosome. We also advocate for opportunity, inclusion, respect, understanding and protection for people who have some extra vulnerabilities that stem from having that extra genetic material.

All persons with Down syndrome are cognitively impaired to one degree or another, but every one of them has the capacity to learn, be independent, enjoy hobbies, work and have meaningful relationships.

Persons with Down syndrome often have physical impairments as well. Most common, they have low muscle tone which makes it take longer for them to learn to crawl, walk, run, hop, and skip but oh can they dance! Low tone also affects the facial and tongue muscles so a delay in talking and speech issues are also common. Despite having a low tone, people with Down syndrome can be great athletes and many enjoy being on sports teams and participating in the Special Olympics.

Other physical issues common to persons with Down syndrome include heart impairments, hearing impairment, Celiac disease and an increase risk of Lukemia and Alzheimers. Science and medicine have come a long way in treating these conditions and there is much hope. People with Down syndrome are living longer and longer as new treatments are developed.

Research regarding how to improve the cognitive function of persons with Down syndrome shows promising results. However, research for Down syndrome, which occurs in 1 in every 700 births , is grossly underfunded.  As a mom, I am hopeful that one day, there will be treatments that will enhance my son's intellectual capabilities and give him the best opportunities life has to offer.

However, there is still a long way to go when it comes to inclusion and acceptance in society. When the "R" is used so casually, when we allow children and the vulnerable to be made fun of in our TV shows and by our celebrities, when police officers use force instead of patience to remove a confused and frightened young man from a movie theatre resulting in his death, when our little ones get left out of birthday party invites, when we have to fight for our right to the least restrictive environment in education and when scared moms-to-be are presented with antiquated information about raising a child with Down syndrome and are encouraged to abort. I hope for a day when persons with Down syndrome and other disabilities are seen for the beauty and value they bring to this world. For their abilities, instead of their disabilities.

I am so thankful for my little buddy. He has brought immense joy to our lives and is so happy and full of life. Last week, I went to a theatrical production of Grease put on by the Habima Theater in my town. The acting group is primarily made up of persons with developmental disabilities and included several actors with Down syndrome. The play was wonderful and I was so elated by their achievement and their expressions of pure joy as the performed! I know the possibilities for my son have yet to be imagined!

If you'd like to support Down syndrome, please

Previous Posts:
21 things to know about Down syndrome

Three Things To Know About Down Syndrome

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