description

Learning to walk the tightrope of motherhood...

Saturday, January 8, 2011

Oh, she's sticking out her tongue!

One of the comments we get most often about Meredith, other than "Look at all that hair!", is "oh, she's sticking out her tongue!" This is primarily related to her hypotonia, or low-muscle tone, since it takes work to hold your tongue inside your mouth. It is probably one of the characteristics that is most telling of Meredith's Down syndrome, but, if you don't know a lot about Down syndrome, as I didn't until April, you might just think she's hungry or being cute. However, at our tasting at our local wine shop today, it was Mer's tongue sticking out that led to a wonderfully supportive conversation.
When you begin reading stories about people who have children with Down syndrome, you start hearing about little whispered words of support that they get, from time to time, from other people in the community who are close to someone with Down syndrome. Since social coutesy demands that you don't mention a woman's bump until you know for a fact she's expecting, I have long wondered about these conversations, about the even more sensitive subject of a child's disability, start. It turns out, they start simply and sweetly like this...
Meredith was hanging out in her Baby Bjorn, flirting with our wine shop's owner and some of the other customers while Greg and I sipped a sangiovese. The woman next to me started talking to Mer and about the cute little tongue sticking out of her mouth. I had already mentally composed my response when she added, "My niece did that with her tongue for the longest time too. My sister used to always tap her on the tip of her tongue to get it to go back in."
I adjusted my response. Clearly, here was someone who was familiar with speech therapy and such in young children. Maybe I could explain about the hypotonia...maybe I could ask if her niece was still doing the tongue thing...I decided to go out on a limb...
"Meredith has Down syndrome," I started.
I had barely finished my sentence when she started hers..."So does my niece."
She had known. And she had reached out.
Gracefully.
Without offense.
And over a glass of wine!