Impatient For Change — Down Syndrome Advocacy

I recently attended the “Best Practices in Educating Children With Down Syndrome” conference sponsored by and held at LIU/CW Post Campus on Long Island in March. I gathered so much information with which to go forward and make more informed decisions on behalf of my children with Down syndrome but I also gathered… ammunition, I guess is the right word… to fight the fight each one of us knows we have ahead of us to ensure that our children are afforded all the opportunities they need and deserve to succeed and achieve all that’s possible.

During Friday morning’s opening remarks, I had the pleasure of listening to a surprise guest speaker… A man who spoke of his experience working in the 1960s , I believe, as a Psychologist at Willowbrook, a facility then referred to as a “mental institution”. He told the history of the institutionalization of people with disabilities in New York State which was, sadly, reflective of how such populations were treated throughout the United States during that time. It is a heartbreaking story for people with Down syndrome (as we all know). But, he explained, they were doing what was thought to be “best practice” for people with disabilities based on the most current research and thinking at that time. I found it fascinating to hear his point of view and how much things have changed in this one man’s adult life.

In speaking with him afterwards, he said with personal directness, “I’ve had the luxury of watching these amazing changes over the course of many years. And, while we’re so far from where we all know it’s going and where we all know it should be, I have had the luxury of a long-term view and I know the changes will come eventually. But, as the mother of two children with Down syndrome, YOU CANNOT BE PATIENT and wait for these changes to happen. It’s YOU that will bring about these changes in my lifetime. And, you need to be impatient about it… for your children’s sake. Don’t sit back and wait. Go out there and fight for your child’s INCLUSION in our society in every sense of the word.”

His words struck me profoundly and will be an inspiration for me personally to continue and grow my advocacy efforts on behalf of my children, your children and all the children that come after. He’s right. I cannot afford to be patient. My children only have this life to live and I will not allow the barriers that exist today to hold them back in their achievements. I am impatient! Impatient for their acceptance. Impatient for equal opportunities. Impatient for change.


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, Down syndrome, Down Syndrome Advocacy, Down Syndrome conference, Down syndrome research, Education, special needs. Bookmark the permalink.

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