“She said I have special needs in my face.”

posted Monday June 17th, 2013

We went to a giant water park on the west side of Phoenix yesterday. That’s not typically my idea of a good time, but it was Father’s Day and Ray was so excited I couldn’t say no. He can’t manage that kind of outing solo. Annabelle will go on all the slides with him — but Sophie’s a wimp, like her mother. We work well that way, as a foursome, and once in a while Sophie will give something a try.

Not me. I am staunchly anti-slide. Didn’t get wet above my knees yesterday. But to my surprise, I sort of enjoyed myself. The park was relatively clean and there were lots of lifeguards, but the part that really made me happy was the people watching. Holy crap, there were people there in all shapes and sizes and the one thing that united them was their total lack of modesty — that and a love of tattoos. I felt the sweat dripping down the back of my cover-up as I watched them frolic.

The day was half over when it occurred to me that I hadn’t seen a single person with Down syndrome. Water parks, amusement parks, the mall — these are the places I see people with DS, where I grab sideways glances since 10 years in I still have trouble, sometimes, with the head-on stuff.

Then I saw him, in the shallow end of the wave pool. Funny, I thought, these days I can tell in a snap from the back — just from the shape of the head and the curve of the neck — but I had no idea the day Sophie was born. On her 10th birthday last month, Ray emailed me a photo marked nothing but “5-21-03.” It was Sophie, just a few minutes old, still in the delivery room.

Looking at that photo now, I think, “Fuck yeah, she has Down syndrome!” Anyone could tell. Right? Yet the pediatrician didn’t think so; our families didn’t suspect til the test results came back and we told them. It wouldn’t have occurred to me if Ray hadn’t noticed that Sophie didn’t much like Annabelle did when she was born.

“Hey Sophie,” I said, leaning down to whisper in her ear over the loud waves,” look at that guy. He has Down syndrome, too.”

She looked.

“I know him,” she said. “He’s in Special Olympics.”

Yeah right, I thought. We’re across town, there’s no way. To me, this young man (late teens, maybe in his 20s?) looked like just about every other young man I’d see with Down syndrome.

Sophie walked up and tapped him on the shoulder. They hugged and exchanged a few words, and his caregiver confirmed that the boy is on Sophie’s track team.

“Where’s your mom?” Sophie asked.

“School.”

“Where’s your dad?” I don’t know why, but I got a bad feeling.

“Died,” he said softly.

Happy Father’s Day, I thought to myself, wincing.

Sophie hugged him again, then we left the young man, moved across the wave pool, getting a little deeper. I picked her up, pulling her face to mine, under my straw hat.

“What do you think of that, seeing other people with Down syndrome?” I asked. “How do you feel these days about having Down syndrome?”

We hadn’t talked about that much in a while.

“I don’t want to have Down syndrome,” she said. “I want to be like other people. I don’t want to have special needs.”

I hugged her close.

“Oh Sophie,” I said, “we all have special needs! I have special needs.”

She shook her head. “Gracie said I have special needs in my face,” she said.

In your face?! I thought. Wow. Gracie is one of Sophie’s oldest and best friends. It seemed odd she’d comment on Sophie’s physical appearance.

“When did she say that?” I asked. “Where?”

“At school. On a Monday. She said it in my face!”

“Oh. You mean she told you that you have special needs.”

“Yes! Right in my face!”

Better than behind your back, I thought, wincing.

Did you enjoy this article?
Share the love
Get updates!
Tags: Filed under: Uncategorized by Amysilverman

5 Responses to ““She said I have special needs in my face.””

  1. Em just turned nine. These conversations are years off…if they ever happen.

  2. Is it wrong to teach a sarcastic response- of “Yeah you’re right Gracie- right now my “special need” is for you to learn to be nice.”

  3. I just love, love Sophie.

  4. And this had me crying at the picture.

    Then I read the post.

    xoxo

  5. I love you. I love Sophie. I love the new author picture, too. Love, love, love, that’s what it’s all about … (to quote a song from the many vacation bible schools of my youth). <3

Leave a Reply

My-Heart-Cant-Even-Believe-It-Cover
My Heart Can't Even Believe It: A Story of Science, Love, and Down Syndrome is available from Amazon and 
Changing Hands Bookstore
. For information about readings and other events, click here.
Scroll

Archive

Scroll
All content ©Amy Silverman | Site design & integration by New Amsterdam Consulting