When Alex was born 19 years ago we lived in the Chicago suburbs, and unbeknownst to me at the time, home of the National Association for Down Syndrome (NADS). NADS is a parent education and advocacy group and has had a huge impact on the down syndrome community in the Chicagoland area. Please check out their website.
We were visited by a social worker at the hospital soon after Alex’s birth and diagnosis. She came loaded with information about down syndrome, medical issues, school programs and NADS. As we looked over the information we became completely lost and despondent.
Suffering from too much information, a baby in the NICU and lots of uncertainty I called the NADS hotline. I was lucky enough to reach Sheila Hebein, the Executive Director of NADS to whom I cried, shared my fears and asked for advice. But instead of the answers about Alex’s future I wanted so badly, Sheila shared four very simple words:
“She’s a baby first”
And on that day over 19 years ago, it took me only a few seconds to understand what Sheila meant, and to embrace those four simple words that changed my life. It was really quite straightforward, treat Alex like a baby and she will be a baby, down syndrome is only a part of who she is, she will always be Alex first. Just like I am not defined by my physical or cognitive attributes nor should Alex or any people with disabilities be defined by theirs.
I cannot think of any other statement that has changed my life as positively as those words. It has guided me though IEP meetings, interactions with “unaware” educators, coaches and myriads of service providers. It has taught me to look at all children and adults with disabilities as people first and enriched my life in countless ways. And now these four modest words are guiding me as I listen to Alex’s dreams for her future, not my future for her.
“She’s a baby first” is people first language and as we all blog for the next 30 days, this is why we blog. Our kids are babies, toddlers, pre-teens, teenagers and adults first. They are not their 47th chromosome they are people just like everyone else in our world.
Stay tuned for:
3/21 People First Language
4/21 The NADS Conference
I got that same piece of advice when Cate was a baby and the first thing I tell new moms who ask me questions about the future is "she is a baby first, enjoy it".ReplyDelete
I am so glad it was just my experience!Delete
Our neonatologist gave us the same advice about 2 minutes after giving us Hailey's diagnosis. He told us to take everything else as it comes. It was the best advice I have ever received (and I have given it back many times!)ReplyDelete
That is so great - 2 minutes is a record for people first language!Delete
Good advice! I don't think we can hear it enough that first time round. Especially when therapists enter! Fun to see you going back to those days ... I am probably going to post some old writing (about the first days) too sometime during this blog thingee. Its fun! Wish there was a way to list all the blogs each time we blog. There are a lot doing this challenge!ReplyDelete
I am so glad - you will be participating...would love to read your old posts again because I sure won't remember them!Delete