World Down Syndrome Day

On March 23, two days after the celebrated World Down Syndrome Day, I gave a talk about THE NORTH SIDE OF DOWN at the Rotary of Grosse Pointe, Michigan.

I explained how I had grown up with a younger sibling who had Down syndrome.  I laundry listed some of the physical distinctions; the line across the palm, the short stature and soft muscle tone, and of course the slanted eyes. I explained how the disability is caused by an extra or partial extra chromosome.

This all seems like common knowledge, but then I said, “People will claim that folks who have Down syndrome are just like the rest of us.  But let’s face it; they are not the same.  They are physically different and they are intellectually disabled.  The extent of intellectual disability varies among individuals.

“HOWEVER,” I added.  “People with Down syndrome are emotionally just the same as we are. In fact, some of them are more evolved emotionally than some of us.  And they certainly deserve the same amount of respect and consideration as anyone else.”

After my talk, one of the club members approached me and said, “It took a lot of courage for you to say that people with disabilities are not the same.”

He launched into a rant about school meetings where parents were literally screaming about, “inclusion.”

“They just want their kids to be the same,” he added.  “But they’re not.  But that’s what they want.   Their kids don’t usually make it past kindergarten, and then they head for special ed.”

He left and I wondered if his assessment was true about the parents’ expectations.  I remember when Amanda was in kindergarten.  My parents did attempt to mainstream her, and the teacher couldn’t cope with her stubbornness.  She came home with black and blue marks where the teacher had pinched her.  Dad was livid.  It had turned out exactly as the Rotary member had said: Amanda was bused to Special Ed classes after kindergarten.

My heart went out to these parents of whom he spoke; many of them perhaps overwhelmed by the thought of what may lie ahead of them.  I wondered about his perception, why education had to be a fight.  Did some parents go in expecting that life would be a fight?  I didn’t explain to him that, just two days prior, we had celebrated World Down Syndrome Day.  I am so happy to see the recognition slowly spreading throughout society that it is okay to have a child with Down syndrome.  It is okay to have Down syndrome.  It can really be okay.

At the risk of generalizing, one can learn a lot about the art of acceptance through a child who has Down syndrome.  If you get the opportunity, just spend a little time in their world.  Sit with them.  Simplify.  Breathe.  It can be something akin to meditation.  It’s true that everyone is different, and each child is certainly an individual with his/her own challenges, abilities, and talents. But this was not the first time it crossed my mind that all of humanity might benefit from an extra chromosome.

Here are a couple of cool links that popped up on World Down Syndrome Day:

Parents Magazine: 21 Faces of Down Syndrome from Around the World

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Isabel gets onstage with Michael Franti and Spearhead!

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Known for laying down tracks with his band, Maroon Five, this time Adam Levine lay down in the literal sense: On the floor, for a fan.

Christopher Warner, a ten year old boy with Down syndrome from Howard County, Maryland, had dreams of meeting Levine. Christopher drew pictures of himself with Levine and made Maroon Five the subject of a writing project. Not one to have stage fright, Christopher sang, “One More Night” at his school’s karaoke event. His devotion to the group was legendary throughout his class at West Friendship Elementary. His teachers and classmates helped him make a YouTube video, featuring Christopher singing Maroon Five songs and talking about them.

The Kane Show, of DC radio station Hot 95, got wind of the video. Maroon Five was scheduled to play at Verizon Center in DC on Monday, March 6. Intern John of The Kane Show arranged for concert tickets, and a backstage pass for Christopher.

The boy traveled to DC with a group of teachers, his mother Cecilia, and Intern John to attend the concert. He was greeted at the Greene Turtle restaurant with dinner and free gifts. He even gave an interview, handling the microphone with aplomb.

However, when he went backstage and actually got an up close and personal view of Adam Levine and the band, Christopher lost his nerve. He suffered a mild panic attack and lay down on the floor by his mother. Hoping to put Christopher at ease, Levine immediately suggested they all join him on the floor. The band members, Intern John, Christopher’s mother, and Adam Levine all lay down with the boy. There, sprawled on the floor backstage at Verizon Center, the entire group posed for photos and just hung out with Christopher until he recovered.

Things got better and better for Christopher after that. Levine signed a picture the boy had drawn of the two of them. Christopher was presented with a pair of drumsticks, a t shirt, a poster, a CD, and no doubt, a wonderful memory.

I’ve never been a particularly huge fan of Adam Levine, mainly because I just don’t pay much attention to who sings the song I like to sing along with.  However, this story melted my heart.  How many people would have the intuition, not to mention the inclination, to lie down on the floor WITH the kid?!

Adam Levine has a new fan.  Christopher has good taste.

What a great day/month/year in the world of folks with Down Syndrome.  Can’t wait to see what happens next.

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About Nancy J. Bailey

Artist, author, bad karaoke singer. Woodsy ragamuffin. Mom of a horse named Clifford who plays fetch and paints with watercolors. He visits libraries and schools with me, to promote literacy and making the world a better place. Yes, he is house trained, no, he doesn't live in my house! I have written three books about Clifford. But my newest book, THE NORTH SIDE OF DOWN, is co-written by my awesome sister Amanda, who has Down syndrome. Her unexpected one-liner wisecracks can always make me laugh. If you make me laugh, you've made my day!
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