Sensory disorder leads parents to seek help

Mason, now 4, was content to play alone. If someone shoved him, he might cringe, but otherwise he didn’t respond. And even though he could hear, if his teacher called his name, he wouldn’t answer without them touching him.

“He was cute, compliant and quiet,” said his mother, Carol Taylor of Atlanta, “but it wasn’t typical.”

Mason’s brain wasn’t processing from his five senses, leaving him unable to engage in his surroundings.

He had sensory processing disorder, a condition that exists when sensory signals don't get organized into appropriate responses. For instance, a person with SPD like Mason might under-respond and show little or no reaction to stimulation, even pain or extreme hot and cold. Another might over-respond to sensation and find clothing, physical contact, light, sound, food or other sensory input to be unbearable.

According to one study, as many as one in every six children experiences sensory symptoms that may be significant enough to affect aspects of their daily lives, said Sarah A. Schoen, director of applied research at the Sensory Processing Disorder Foundation in Greenwood Village, Colo..

Carol Taylor said she noticed something was off about Mason’s responses when he was an infant and it was difficult for her to soothe him. Then in preschool, when other kids danced and sang to music, the 38-year-old mother of two said, Mason wouldn’t mind being part of the group, but he wouldn’t participate.

Taylor, a former special education teacher turned pediatric occupational therapist, said after sharing her concerns with Mason’s pediatrician, she decided to trust her “mommy gut.”

Taylor enrolled Mason in occupational therapy.

Because motor clumsiness, behavioral problems, anxiety, depression, and school failure can result if the disorder is not treated effectively, it’s crucial that parents seek the help of a well-trained clinician, Schoen said.

“Ideally, occupational therapy for SPD is family-centered,” said Schoen. “Parents are involved and work with the therapist to learn more about their child's sensory challenges and methods for engaging in therapeutic activities [sometimes called a 'sensory diet'] at home and elsewhere.”

In addition, she said, a therapist can provide ideas to teachers and others outside the family and help parents become better advocates for their child at school and in the community.

At Children’s Healthcare of Atlanta, for instance, Stephanie Pretti, occupational therapist team leader, said, “We use occupational therapy that looks like play to give them opportunities to experience the sensation that their body is not interpreting correctly in a controlled manner.”

If a child is afraid to move, Pretti said putting them on a swing and giving them small pushes back and forth helps them become less afraid and able to go to a playground.

“Most children with SPD are just as intelligent as their peers. Many are intellectually gifted,” said Schoen. “Their brains are simply wired differently.”

Pretti said that nearly 80 percent of the 40 kids she sees each week at Children’s Healthcare of Atlanta have sensory processing disorder.

And at her small Atlanta practice, PlayWorks Pediatric Therapy Inc., Taylor and her colleagues see nearly 25 children a week.

Symptoms, like most disorders, occur within a broad spectrum of severity. And because the disorder is not a recognized disorder in the Diagnostic and Statistical Manual used by physicians to categorize childhood disorders, Schoen said that insurance companies do not routinely provide reimbursement for SPD treatment, which can range from $100 an hour to $350.

She said the foundation has an active campaign to get SPD recognized by the revised manual being published in 2014.

Although the cause of sensory processing disorder is a subject of ongoing research, Schoen said preliminary research suggests that SPD is often inherited and therefore coded into a child’s genetic makeup. Prenatal and birth complications have also been implicated, along with environmental factors.

The important thing, Schoen said, is that parents understand “this is a real disorder and not due to poor parenting.”

The trick, Taylor said, is getting them into therapy early.

“When I get them at 7 or 8, I wish I’d seen them at 3 or 4 because by then their self-esteem is already damaged,” said Taylor.

Mason, who has been seeing a therapist three times a week for the past year, is nearing the end of his treatment, said Taylor. Mason has been working with therapists from Individual and Team Therapy Services for Children in north Atlanta.

After a year of intense therapy, Mason is showing tremendous progress, his mother said. But here’s the thing -- there’s really no cure for the disorder. Occupational therapists, however, help patients learn to cope and improve the quality of the lives of the children and their families.

“When you have intensive therapy at this age, you won’t need it again,” Taylor said. “He’s been able to learn lifelong skills that’ll help him be able to focus better and process information better.”

For more information

Here are some websites that parents might find help helpful: www.thespiralfoundation.org and www.sinetwork.org.

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