My son Anthony has Down syndrome (DS), and I knew nothing about what it was before his birth on June 3, 2009. I did watch Life Goes on years ago, which had an actor with DS on it that played the character Corky. I have met a few in my life, but only one person with DS that sticks out in my memory. This young fellow was looking for cans to recycle so I gave him a bunch of soda cans. His face was all lit up, and he went on his way to cash in his aluminum jackpot.
On June 4, the pediatrician approached me to tell me the news. “Anthony has the physical markers of a child with Down Syndrome.” Those indicators are the shape of the eyes, the “hook” pinky, and the lines on their palms are different. However, his doctor was not convinced he did have it. It took a very long week to know for sure. Blood was drawn from my newborn son, and a week later it was confirmed that he did, in fact, have an extra chromosome, or as I call now an ‘extra something special’.
We were told he’d have delays. We had no way of knowing when he would hit certain milestones. Not much longer after his birth, he started Early Intervention. It started off with a “teacher/educator”, a physical therapist, and a speech therapist all coming to our home one day a week. They each had their own day, and over time we all witnessed Anthony grow from a tiny baby to a toddling charmer.
Self-advocacy is something I’ve noticed in a lot of the newsletters I read. Anyone old enough to know that they should be treated like everyone else will stand up for themselves, and he/she will continuously search for support and acceptance in today’s world. The Down Syndrome Society of Rhode Island and The Massachusetts Down Syndrome Congress are both organizations that strive at helping make the lives of all who have DS a better place to be and us better for knowing them.
Ouch. I cringed when I read your comment! I know that in our case, a lot of people and organizations prefer we say “a child with type 1 diabetes” instead of “a diabetic child” or “a diabetic,” but parents are given a lifetime free pass to use whatever terminology they choose. I know it’s not the same as Down’s, but I’d think the same rule applies: give a parent a break whenever possible, and accept that every family does things its own way.
I cringed when I read this headline. My daughter has Down syndrome, and I’m surprised to find a fellow parent referring to their child this way. Please use PEOPLE FIRST language, i.e.”my son who has Down syndrome”. Not a “Down syndrome child”/”Down’s baby”. The MDSC and other organizations creating awareness about Down syndrome specifically discourage that term. Not certain they will appreciate you linking to their websites.
Thank you so much for your comment Katy! I feel truly blessed to have Anthony and all who followed him into my life! 🙂
Love love love!
It’s amazing the community that emerges when you have a child with a difference.