How to Talk to Parents of Children With Down Syndrome

I am much more inclined to tell the whole truth when you assume she is someone to celebrate.

When people discover that I have a child with Down syndrome, I often receive a murmur and a sympathetic nod of the head. I almost immediately feel something tighten inside my chest, as if I am steeling myself for a fight my opponent doesn’t even know they’ve initiated. Most of the time, that person talking with me is trying their best. Unless they have a family member or friend with Down syndrome, their impressions of our family life come from vague or stereotypical media portrayals. I know my own reaction when we found out, two hours after Penny was born, that her body contained a third copy of chromosome 21. Fear, anger, guilt, sadness. That’s what I felt, and that’s what many people expect when they talk to me about Penny.

But when I talk about Penny with a new person, I want to share the same types of things I would share about any of my kids. I want to share the joy of being her mom, the funny things she says, her love of music even though she sings off-key, her goal for the year of doing a handstand, her precocious reading ability, her Gumby-like body that allows her to flop into poses I could never imagine for myself.

It’s not that there’s nothing difficult about having a child with Down syndrome. It’s just that starting with the hardship betrays her, as if difficulty marks my life as a parent instead of love or joy.

We do go to the doctor more with Penny—regular visits to the orthodontist, ophthalmologist, otolaryngologist, physiatrist and I’m supposed to check in with the cardiologist sometime soon. Penny works with a physical therapist, an occupational therapist, a speech therapist, and a special education teacher at school. Her low-muscle tone brings …