November 21, 2005

Tales From The Crib

Sensitive to kids’ special requirements

Jennifer Margulis

“Mommy, come wipe me,” my 4-year-old daughter cried from the bathroom. My 2-year-old son was sitting on my lap and I was reaching around him awkwardly to cut my 6-year-old’s dinner into bite-sized chunks.

“Coming,” I called back. I had slept badly the night before and dinner was turning out to be particularly trying. There just wasn’t enough of me to go around. As I lifted Etani—who started shrieking “I wanna come too, a’ight?”—onto a chair and headed towards the bathroom to wipe a tushy for the seventh time that day, I found myself thinking that I really just wanted my children to grow up.

Then I talked to Carrie McGee.

When her son was born he couldn’t eat and he couldn’t sleep. He would spend hours trying to swallow a little bit of sustenance only to throw it all back up again. He was tiny, failing to thrive, and he cried all the time. Although she had an older stepson, Carrie was a first time mom and didn’t know better. She thought Alex had terrible colic.

At three months Alex was diagnosed with a heart condition. Then the doctors found out he had neurological problems. At six months (which was unusually early because of a fluke coincidence that an older girl in the same practice had just been diagnosed with the same thing) Alex was diagnosed with Williams Syndrome, an extremely rare genetic abnormality. Williams Syndrome only occurs in something like one in every 20,000 births but for McGee the chances their child would have it were 100 percent.

According to everything Carrie read about Williams Syndrome, which is a random deletion of the gene for elastin, as well as everything the specialists told her, Alex’s future looked bleak. Among other things they predicted he would have serious developmental delays, attention deficit disorder, hyperactivity, and a host of other problems. McGee couldn’t believe what they were telling her about the tiny beautiful baby she held in her arms each day. “He’s six months old, he’s perfect, how can you say that?” she thought as the forecast of doom and failure continued.

Carrie McGee decided to fight.

Her first battle was with Alex’s pinky finger. The medical literature insisted that children with Williams Syndrome have contractures in their pinkies. “Every day all day I would exercise his pinky and say ‘okay we’re going to beat it. I don’t know how but we’re going to beat it.’”

On a fast career track before her son’s diagnosis, Carrie quit her job, moved from New Jersey to Massachusetts, and founded Whole Children, a non-profit organization to help families and children with special needs. Based in Hadley, Massachusetts, Whole Children offers gymnastics, yoga, recess games, and other classes to children with special needs. But more than that, it offers a place for families to be safe. The parents in the lobby whose children are participating in the classes laugh and cry together, they share stories without judgment and support each other instead of rolling their eyes.

When you have a child with special needs, McGee told me, your child is the one who is never invited to birthday parties, who doesn’t go on playdates, who the teachers—however sensitive and kind they may be—often dread having in their classes.

It must be very lonely to have a child who is different. There is a gap between you and other parents that may be even wider than the gap between people-with-kids and people-without-kids.

Carrie McGee’s son is nine years old now. He lights up the room when he walks into it. He’s learning to play the violin, likes to tinker around on the piano, and can do cartwheels and handstands. And his pinky finger is not contracted at all.

I don’t want to be the kind of person who rolls my eyes at other people’s children and I don’t want to be the kind of mother who wishes her children would grow up faster. I want to be more like Carrie McGee and more sensitive to special needs families. The next time Athena calls me to wipe her, I do so with alacrity.

Jennifer Margulis is the mother of three children and the author of three books. Her most recent, “Why Babies Do That: Baffling Baby Behavior Explained,” is available at Bloomsbury Books and Bug-a-Boo.