Every parent wants their child to have a shot at the American Dream. For the parents of a child affected by a severe disability such as Down Syndrome or autism, that hope for a secure future is no less powerful.
That night the little girl cuddled in bed, not knowing or caring that she has changed so many people. But she slept peacefully without regret or worry. And she woke the next morning to share her healing hugs all over again.
I love the way she coos, and the way she smiles a goofy, mouth-wide open grin. In five days, I will be handing her over to a team of pediatric surgeons. They will cut open her chest and, provided all goes well, they will repair her heart.
There was such a spirit of joy, of connectedness and hope at the Be Beautiful, Be Yourself Fashion Show. The outpouring of love was reflected in an outpouring of support as a wonderfully executed live and lively auction brought out cheerful givers, open hearts and open pocketbooks.
I wondered if I would lay claim to those words -- not just string them together, but lay claim to their meaning. Lay claim not just to my daughter, but to her extra chromosome. Because cognitive disability was hard for me. Very, very hard.
The words, the images, speak for themselves, though they cannot speak for all those who live with Down syndrome. Still. It might be about how we perceive, what we choose to value, if we can live with and even see the beauty of asymmetry.
Tomorrow legislative leaders will join Governor Patrick at Fenway Park to celebrate the passage of three bills, including one which enacts the ABLE provision. This component has the potential to transform life for families with children with autism and other disabilities.
There is a petition sweeping the Internet asking Disney to incorporate a protagonist with Down syndrome, but there is a backlash brewing even within the special needs community asking, is it necessary?
Remarkably, people with Down syndrome have an increased incidence of leukemia but a much lower incidence of solid tissue tumors. What is it about the extra copy of chromosome 21 that protects them from solid tumors but predisposes them to blood cancers?
People who have Down syndrome are just like the rest of us in that they don't want to be viewed as different. They want their identifiers to be those of brother, son, daughter and friend (perhaps even husband or wife), rather than a genetic condition.
For the first time ever, my son had ordered his own meal and was understood. As the three of us sat at the table basking in his moment, I noticed my son's attention was drawn to the table behind us. First, he was smiling and then he wasn't. He was frowning.
October is Down Syndrome Awareness Month here in the United States. I'm personally not out to promote awareness anymore, because we are there already. We are aware that people with Down syndrome are the same as people without.
When my daughter was diagnosed with Down syndrome, I was given a list. A list of potential features and problems to expect. This list is cold, emotionless and almost comes across as grotesque if you are reading it with fear already in your heart.