Please Get to Know My Child With Down Syndrome
“Is Gigi going to start skating lessons?” Her sister’s hockey coach asks me this and I appreciate his assumption that she can do anything any other 4-year-old can despite having Down syndrome.
I’m standing with some other moms at Gigi’s school waiting for the kids to get out. One says, “Tell me why kids with Down syndrome get hospitalized with respiratory viruses more frequently than other kids.” I’m happy that she cares enough to ask and I go on to explain that they have low muscle tone and sometimes have a hard time clearing out their lungs.
A gentleman holds the door open as we walk into the hockey rink. Gigi has a death grip on a lollipop and he asks her, “How’s that lollipop?” She doesn’t respond so I do on her behalf, but I’m grateful that he treats her like any other kid. He wasn’t afraid to approach her.
According to globaldownsyndrome.org, only 38 percent of Americans actually know someone with Down syndrome. With about 1 in 600 births, it’s not very common and the uncommonness contributes to the stigma. It is why many are misinformed and simply uneducated. I was in that position before I had a prenatal diagnosis at 11 weeks. I knew nothing about Down syndrome and therefore was devastated by the news. I never would have been brave enough to approach a child with Down syndrome and ask them if their lollipop tastes good. I would have just fearfully ignored and looked away.
The encounters I mention above stick in my head because, to me, they are an example of inclusion. These people were sincerely interested in my child and I cannot say enough how much I appreciate that. If you want to interact with my child, please do! She will most likely engage you. Just like any kid (or adult) you may not get her at her best moment, but your attempt means so much.
We are at Sunday Mass and Gigi and I walk together so I can receive Communion. I take the host and then the Deacon bends down toward Gigi to give her a blessing. “No!” she yells.
“Gigi, say thank you,” I direct to her. “Thank you, Father,” I say, completely flustered and embarrassed, realizing immediately that sometime in my 12 years of Catholic school I did learn that you say Amen and not thank you after a blessing — and that this Deacon may not have preferred being called Father. We all have our bad days, Gigi and I included.
Please do inquire about my child. Ask me questions and tell your children it’s OK to do the same. I will be thrilled to answer. And no question is ridiculous; how could I think that when only five years ago I knew nothing and had the same questions as you?
As a mom of a child with a disability, it is my job to educate and not pass judgment on the questions you ask or the terminology you use. I can’t expect you to know how to be politically correct if you are just learning. I only ask that when you learn, for example, to say child with Down syndrome instead of Down’s kid that you try to remember to practice it.
Please do speak to my child. Get to know her. When she smiles it will warm your heart, I guarantee it. When you hear her little voice, it will pull you in and make you want to hear more. If you don’t understand her, I’ll be there to translate. By simply doing either of those two things, you will learn so much, and if you’re not familiar with Down syndrome, you may be surprised.