Raising special, lovable, maddening, challenging children

Parents of special needs kids start Easy to Love, Hard to Raise

Published: Friday, Oct. 14 2011 11:00 p.m. MDT

Lindsay Bartholomew tickles Emma. Bartholomew says there are perfect moments, even amid the challenges in raising a child with serious medical challenges and disorders.

Laura Seitz, Deseret News

SALT LAKE CITY — Lindsay Bartholomew has this theory that the neighbor on the other side of the thin wall Emma continuously pounds with her heels wishes they'd move away — or worse. Sometimes the little girls screams and screams. "I'm afraid someone's going to call the police," her mom says.

Emma is not quite 4, a sprite with a remarkable smile, some serious medical challenges and a central nervous disorder that includes anxiety and sensory processing challenges. She kicks the wall and screams not because she's out of control or someone is hurting her, but because she needs to in very real ways she's not yet able to explain, although her language development is finally coming along pretty well.

Sometimes things are not quite as they appear — especially in families with children who have behavioral, mental health, cognitive or sensory impairments. And that's a lot of families.

The National Institute of Mental Health estimates that as many as 2 million children in the United States have attention deficit hyperactivity disorder (ADHD), while more than 3 of every 1,000 children has an autism spectrum disorder. A full two million or more have various disruptive behavior disorders. Then there's depression and bipolar disorder and... . The list is long.

A 2009 National Health and Nutrition Examination Survey found that 13 percent of children met criteria for at least one of six mental disorders. Some have multiple issues. And there are far more than those six disorders to consider.

"I was that woman, the 'Can't you control your kid?' one," says Rebecca, whose son Cole, 3, has ADHD. He was also exposed to drugs in the womb. She adopted him not knowing he would be so challenging. "To be honest, I still would never have changed my decision," she says. "But I would have been better prepared."

Tonight, she and Bartholomew are facing each other in a circle at the Sharing Place, here for the Utah Easy to Love, Hard to Raise parent support group that Bartholomew and another mom at her kid's school, Jen Levy, started. Levy's son Hudson, 3, has autism.

They had to start their own group because that's one of the biggest challenges for parents of children with so many disorders. There are doctor visits to take care of medical nuts and bolts and there are specialized therapies and school classes. But there's very little to help parents figure out how to be parents in such a situation without losing all the other roles they occupy, like mother to other children or husband or good employee.

The parents here commiserate, agreeing that it's easy to lose yourself or your other children in the one child's serious, special needs. And it's frazzling, says Bartholomew. When she and Levy, independently, asked about support groups, they were told they should start one.

"I thought, 'Are you kidding me?' I don't even have time to shave my legs," Bartholomew says.

Still, they dived in, creating a blog — Utaheasytolove.blogspot.com — and a Facebook page. Some of the regulars at their monthly meetings — one each in Salt Lake and Davis counties — found them by luck while searching online for resources.

Tonight, the circle includes a couple whose son, 6, has Asperger's, an autism spectrum disorder. He shoves everything into his mouth and sometimes, when they're trying to get him somewhere, like school, he has a meltdown. The mom laughs knowingly when Bartholomew says she's surprised no one has called the police.

A woman who seems young to be a grandmother is raising her daughter's boy, who is just 2 years old and has autism. They'd adopt him, she says, but his medical needs are beyond their financial ability. So they raise him and love him, but the state is the "parent" of record.

Another couple talk of their daughter, 9, who has anxiety and both a processing and a hypersensitive tactile disorder. The sensory disorder, the woman says, is like a spider. It has lots and lots of legs.

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