My campaign resonated with many thousands of people who also knew the pain that word caused. I received hundreds of comments and emails. An email that best summed up what other parents communicated was by a father of a son who has Down syndrome: “I broke down in tears reading Mr. Klosterman’s letter and I’m not a crier. I feel the world is better today for my son.”
Not all parents have the additional charge of activism as part of their parenting duties. But for parents whose children are atypical, it can be a calling to make the world better for more than their child. Ellen Seidman, a popular disability writer and the author of the blog Love That Max, interviewed me about what had transpired. She asked me what I thought Thorin’s reaction would be when he was old enough to read about it.
“Seriously, I hope it’s something like, ‘What else would I expect from you? You’re my mother.’ This is mother’s work. This is my real job. Your kids aren’t supposed to throw a parade every time you have their back.”
When I found out I was going to be on the local news, I had a new concern. We never told Thorin he had Down syndrome. The subject had come up, but we weren’t sure how knowing about it would help him at that age. In hindsight, that rationale was bogus. He has it; he deserved to know.
Next, I considered the following question: can a child—any child—understand what having Down syndrome means? Honestly, I found most adults, including educators and other professionals, knew next to nothing about Down syndrome.
My final consideration was how would I go about telling him. At the time, I couldn’t adequately explain how Curious George was entrusted to navigate ships into New York harbor or fix the Hubble Telescope. How could I explain Down syndrome?
The day before the interviewer came to our house, I woke up at 2:48 A.M., convinced I was going to have an anxiety attack. What if some kid’s parent from school saw me on television? What if he talked to his child about Thorin having Down syndrome? Then, what if the next day at school, that kid asked Thorin about having Down syndrome? Reason should have told me everyone already knew and, more importantly, maybe that had happened, but Thorin couldn’t tell me.
My heart was racing during the next couple hours as I lay in bed, trying to turn this dilemma in my mind. Finally, unable to contain myself, I decided to wake up Ward.
“We have to tell him today!” I yelled, sitting upright in bed.
“What’s happening?” came Ward’s voice from under the covers.
“Wake up, wake up! We have to tell him he has Down syndrome!” I said.
At that point, I knew Ward did not actually have any idea what I was talking about, but he had heard me in this “we must do something” state before.
“Okay, settle down,” Ward said in a resigned, tired husband way. “What time is it?”
“I’m not sure,” I lied.
“Oh, God. Give me thirty minutes. Make coffee.”
After much whispered debate, we decided we would both take the day to figure out how to tell him. Thoughtful planning and teamwork would be our key to success.
After Ward left for work, I told Thorin on my own. 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’m convinced if Little Ricky had Down syndrome, Lucille Ball would have done the same thing after Big Ricky went to the club.
As I watched Thorin 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 way I had never done before.
“Hey, guy, dude, little man, buddy . . .” My voice trailed off, and I followed with maniacal smiling. “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 looked at the floor and saw his substantial collection of Avenger action figures. A couple days before, we had all gone to the movie Thor, The Dark World. In fact, Thorin had worn his Thor costume to the theater.
“Have you ever heard the words Down syndrome?” I asked.
“No,” he said.
I was surprised by Thorin’s response. “Okay, have you ever felt like you were different from other people?”
“No,” he said in an almost indignant tone, which shocked me.
“Okay. Well, I want to tell you something. Yeah . . . you . . . have a super power. It’s called Down syndrome.”
Thorin looked at me wide-eyed and flexed his biceps.
Things weren’t going so bad, so 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 realized the scientific route was 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.”
Thorin nodded his head and smiled, signaling that he accepted all this information.
I leaned forward.
