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Raising special, lovable, maddening, challenging children

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

Published: Friday, Oct. 14 2011 11:13 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) 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.

Lindsay Bartholomew watches her daughter, Emma, 4,  ride her bike in Bountiful on Wednesday, October 12, 2011. (Laura Seitz, Deseret News) Lindsay Bartholomew watches her daughter, Emma, 4, ride her bike in Bountiful on Wednesday, October 12, 2011. (Laura Seitz, Deseret News)

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."

Lindsay Bartholomew and her daughter, Emma, 4,  read in their Bountiful home on Wednesday, October 12, 2011. (Laura Seitz, Deseret News) Lindsay Bartholomew and her daughter, Emma, 4, read in their Bountiful home on Wednesday, October 12, 2011. (Laura Seitz, Deseret News)

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.

Lindsay Bartholomew and her daughter, Emma, read in their Bountiful home. (Laura Seitz, Deseret News) Lindsay Bartholomew and her daughter, Emma, read in their Bountiful home. (Laura Seitz, Deseret News)

"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.

Lindsay Bartholomew and her daughter, Emma, 4,  read in their Bountiful home on Wednesday, October 12, 2011. (Laura Seitz, Deseret News) Lindsay Bartholomew and her daughter, Emma, 4, read in their Bountiful home on Wednesday, October 12, 2011. (Laura Seitz, Deseret News)

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.

The conversation undulates through topics, from how many of their children can't stand to have their skin touched to eating problems. Some of their children won't eat; others won't stop. With eating disorders like anorexia and bulimia, people understand that food and mental health are inextricably connected. It's true of other disorders, as well. Bartholomew tells them she's learned to hide vegetables and fruits in other things so Emma will eat it.

The mom who adopted has found fruits and vegetables packed in a gummy form and that has helped in her son's nutritionally challenged life, she says.

 Emma Bartholomew, 4, picks a flower  in Bountiful on Wednesday, October 12, 2011.   (Laura Seitz, Deseret News) Emma Bartholomew, 4, picks a flower in Bountiful on Wednesday, October 12, 2011. (Laura Seitz, Deseret News)

They are former strangers whose children don't even share diagnoses, but there's common ground — and great relief — in no longer feeling alone. They talk about money and lack of respite and the weird things a hopefully well-meaning public might say. One young girl can't stand to be touched. At church her mom once had to explain that no, it's not a reaction to having been sexually abused. She can't stand to be touched because she can't stand to be touched. That's just how she is.

All children need parents, but none more than the challenging child, whatever form the challenge takes. But some of those parents need help. It's why the American Academy of Pediatrics has fact sheets and resources on food and behavior and parenting tips and other topics.

Lindsay Bartholomew watches her daughter, Emma, 4, ride her bike in Bountiful on Wednesday, October 12, 2011. (Laura Seitz, Deseret News) Lindsay Bartholomew watches her daughter, Emma, 4, ride her bike in Bountiful on Wednesday, October 12, 2011. (Laura Seitz, Deseret News)

Sarah Chana Radcliffe, author of "Raise Your Kids Without Raising Your Voice," knows parents sometimes need guidance. She suggests giving the child treats and privileges, praise, hugs and kisses. A child needs to know he is loved and lovable both, that she is worth listening to, that help is there for whatever the need. Conveying that is something that must happen daily, "even if the child has been disobedient, disruptive or uncooperative," she says. Providing such "good" strengthens a parent's ability and "power" to guide the child.

Still, some parents have kids who will not tolerate kisses and hugs. You have to follow suggestions in ways that make sense given that child.

Melody Altamura, who writes a blog called Life's Twisted Stitches, is raising three children with neurologic and other challenges. Parenting, she says, hasn't been quite what she expected: "I thought I was prepared to handle any mom/parenting situation that might come about. I would be able to handle all their school issues with ease, and would have the background to start them off right so that they couldn't be derailed by the world around them. I was going to mold children with love, respect, discipline, guidance and hope for a lovely future.

Lindsay Bartholomew watches her daughter, Emma, 4, ride her bike. (Laura Seitz, Deseret News) Lindsay Bartholomew watches her daughter, Emma, 4, ride her bike. (Laura Seitz, Deseret News)

"However, nothing could have prepared me for raising my three wonderfully challenging children that I am raising today. I love them with all my heart, soul and mind, but sometimes it takes every ounce of energy and stamina I have within me to guide them through to the end of each day. This fact drives me crazy as I thought I would be able to handle anything and it appears I am not following through with that Super-Mom role...."

There are perfect moments, even amid the challenges, says Bartholomew. As the day winds down, she snuggles with Emma and reads or they pop "Tangled" into the DVD player and watch a different willful princess make her way through the world's challenges. And Bartholomew, still smitten with her child, smiles.

Nothing's better than being with Emma.

EMAIL: lois@desnews.com, Twitter: Loisco

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