A couple of weeks ago, I was interviewed by a local television station. The day they were coming to our house, I woke up at 2:48 in the morning, convinced I was going to have an anxiety attack. Part of the interview was to talk about Down syndrome.
Why did I wake in such a state? My husband and I had never told our 7-year-old son he has Down syndrome.
It isn't like the subject hadn't come up. But how would it help him to know at this age? Can a child -- any child -- understand what that means? Honestly, I find most adults, including educators and other professionals, know next to nothing about Down syndrome.
The other thing -- how would I do it? I can't adequately explain how Curious George is entrusted to navigate ships into New York harbor or why the tediously boring Caillou seems popular. How could I explain Down syndrome?
AdvertisementBut, now I had to. What if some kid's parent from school saw me on TV? What if they talked about him having Down syndrome? Then, what if that kid said to our kid at school the next day, "So you have Down syndrome, huh?"
My heart was racing during the next couple of hours as I lay in bed trying to turn this thing in my mind. Finally unable to contain myself, I decided to wake my husband.
"We have to tell him today!" I yelled, sitting upright in bed.
"What's happening?" came my husband's voice from under the covers.
"Wake up! We have to tell him he has Down syndrome!" I said.
"OK," said my husband in a resigned, tired husband way. At this point, I know he does not actually have any idea what I am talking about, but he has heard me in this we-must-do-something state before, so he then said what he always says -- "Settle down," -- followed by, "What time is it?"
"I'm not sure," I lied.
"Oh, God. Give me 30 minutes. Make coffee."
After much whispered debate, we decided we would both take the day to figure out how to tell him. Very thoughtful planning on our part. Teamwork would be our key to success.
My husband left for work. Then I told our son on my own.
The thing is, I wanted to be Team Us, but I could not manage my anxiety. I believed the only way to not have an anxiety attack was by telling him that morning.
I am convinced if Little Ricky had Down syndrome, Lucy would have done the same thing after Big Ricky went to the club.
As I watched our son from the doorway of the den, I thought, this is the last minute he doesn't know he has Down syndrome. He was watching "The Magic School Bus" and eating waffles.
I walked in the room swinging my arms in a Julie-from-"The Love Boat" sort of way.
"Hey, guy, dude, little man, buddy..." I trailed off.
"I'm going to turn the TV off for a bit so we can talk."
Like all males when notified they need to "talk," he put his head in his hands and yelled, "No, no, no, no. Noooo!"
As I sat on the couch and looked thoughtfully at him across the room, I realized I had no concrete idea of what I was going to say.
I am not sure where the following came from. It may have had something to do with seeing his collection of Avenger action figures on the floor. Also, a couple days before we had all gone to Thor, The Dark World. In fact, our son had worn his Thor costume to the theater.
"Have you ever heard the words 'Down syndrome'?" I asked.
"No," he said. How's that possible, I thought?
"OK, OK. Have you ever felt like you were different from other people?"
"No," he said in an almost indignant tone. This shocks me. It that true?
"OK. Well, I want to tell you something. Yeah... you... have a super power. It's called Down syndrome."
My son looks at me wide-eyed and makes like Mr. Universe with his biceps.
This isn't so bad.
I continued, "Down syndrome is an extra chromosome in your body..."
He started feeling around his mid-section.
"You can't see or feel your chromosomes, they are so small." I am realizing the scientific route is too abstract.
"See, Down syndrome gives you almond-shaped eyes and a terrifically adorable flat nose. And it gives you super powers. Some of your super powers are big love, photography and... um... um... farting. It also made you a little small, talking and being understood is hard for you right now and learning some things takes more work."
I saw by the nodding of his head and smiling that my son accepted all of this information. I am his mother and at age 7, that still pretty much means I have credibility.
The physical characteristics and the cognitive challenges are not debatable. The fact our child is very loving and has an obsession with farting is likely more typical 7-year-old kid, particularly boy, stuff. However, his photography is a gift from somewhere. I am feeling my way here in a world that does not provide a manual for how you tell your kid they have Down syndrome.
I leaned forward and said, "Not everyone sees your super power, so some people just see someone who needs help for some reason."
This piece of information resonates and my son starts laughing.
I continued, "The thing is, Daddy and I always wish we were better parents, but we never wish you didn't have your Down syndrome super powers."
That is absolutely true.
"Magic School Bus?" he asked, directing me to turn the TV back on with a waffle-crusted fork.
"Of course!" I said, relieved. And I was relieved. My anxiety was gone.
I emailed my husband to tell him what I had done. I included: "He's fine. Now it's like a lifelong conversation."
This is why my husband is my husband: He wrote back: "It's OK. You did good."
For almost four years, I have written about our family's experiences, including Down syndrome. My contention has been our son is not that different from "typically" developing peers. My husband and I do not see Down syndrome as a defining characteristic, but one of many our son embodies.
Does that mean our son has a super power? Maybe. Maybe we all do. This is what I do know about his having Down syndrome: it cannot just be about what he cannot do. Down syndrome is not objectively bad. For our family, Down syndrome is something to be respected.
Kari Wagner-Peck authors the blog atypicalson. She is a writer and Down syndrome advocate/activist. You can find her at: www.atypicalson.com. This piece first appeared on The Huffington Post.