What turns a garden variety parent into an advocate? A mother or father "warrior?" For some it's a terrible accident -- like MADD's response to drunk driving. For others it's a product issue -- that would include many of us in th autism community.
For others, like Heather Bradley and her husband sports writer Nic DiBenedetto it was the birth of their daughter Isabel, who has Down Syndrome -- who was diagnosed on the day she was born.
I "met" Nic on Twitter last year when the disability community came together to protest at lipstick name that we found offensive for its play on the "R" word. The long and the short of that story is that a national makeup retailer pulled a celebrity lipstick following the onslaught of protest.
Today is World Down Syndrome Day.I would like to acknowledge my friends who are raising kids with DS. Their road is parallel to mine, we cross paths in some areas, we diverge in others. By high school roommate has a darling son named Nick. A famous New York book editor has a son with DS. I have several friends in town who have sons and daughters with the diagnosis. I'm especially proud of a dear friend (who is also our behaviorist) who, along with her loving husband, a gregarious pastor, is in the process of adopting twin infant boys with Down Syndrome from Eastern Europe. Families with a child with DS deal with many of the same issues I do as mom to three teen daughters with autism -- behavior, school, discrimination, health, "the future" (insert Jaw's theme music here.)
I envy them.
I wrote a HuffPost blog in 2007 ago called "The Boys on the Bus," about the stark differences between full autism and Down Syndrome in terms of sociability, behavior and social acceptance. I called the boy with Down Syndrome on the my daughters' bus "The Mayor." He smiled from ear to ear and made you feel like a million bucks when you talked to him. He still does! The boy with autism on the bus would rock and hold his ears and cover his face every day -- actions that I would understand but that would turn off someone else and probably make them turn away from him. He has made strides I'm happy to say, the differences are still stark.
Acceptance is not acquiesce. It is finding peace and joy and a new way forward despite challenges. With this in mind, Heather Bradley launched a non-profit as part of her advocacy for Isabel:
In August 2012, my husband and I went in to give birth to our third daughter, Isabel. We had no indication that she might have Down syndrome and were surprised to find out shortly after her birth. The first emotion to hit us was fear. Immediately we were told she had a 50 percent chance of having a heart defect (new estimates put that figure closer to 30 percent). Being told your newborn baby has Down syndrome is shocking but moving directly into fear of major health concerns forced me to put processing the diagnosis on hold.
We found out that Isabel, was amazingly healthy. That didn't stop me from googling every night trying to find out as much as I could about this new direction motherhood had taken me.
For me processing the diagnosis went in stages... first fear, then health concerns, then the realization that my child would have a very different life (and what could I do to prevent this/extensive therapies) and then finally the revelation that a "different" life didn't equal "less". I threw away all the yucky stuff in me that said ability equated value.
I've seen that not everyone had such a great start. Last May and six mothers joined us to form Down Syndrome Diagnosis Network. DSDN. We are excited to support parents and make sure they are getting the information, support and connection that they need.
On this World Down Syndrome Day, I tip my hat to all families who love a child with DS and say, "thank you" for your work on behalf of children and adults with special needs.