Sensory integration dysfunction: An unseen, misunderstood disability

Schizophrenia. Attention deficit disorder.

Autism. Tourette's syndrome.

There are any number of psychological and neurological disorders that could be confused with the symptoms of sensory integration dysfunction. Some call it the "misunderstood, misdiagnosed and unseen disability." In Southeast Missouri, all that adds up to little support for parents struggling with SID, from skeptical physicians to judgmental strangers in the grocery store.

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Every night, Braden Weber's parents go through the exact same routine.

Bath at 7 p.m. On the dot.

Dry off. Put pajamas on. Turn light switch off. Touch remote control to fan blade, turn fan off, spin fan blades around. Count to three. Toss Braden into bed. Count to three. Throw blankets over Braden. Count to three. Tuck Braden in. Kiss him on the forehead and both cheeks. Hug him on both shoulders.

And if any of that gets out of order in the slightest way, they start over or risk a violent tantrum that could go on for hours.

In Jennifer and James Weber's 2-year-old son, sensory integration presents itself with symptoms ranging from obsessive compulsion to pervasive development disorder, a mild form of autism.

The Jackson couple first noticed something was wrong with Braden when he was a little over a year old. At 16 months, he was not walking or talking.

He hated the feel of carpet and disliked bathing in water. Even the dimmest light irritates him at night. His bedroom windows are blacked out and sometimes he sleeps in the top drawer of his dresser to keep any other light away from his face.

Only in the past four decades was SID recognized as a disability. In recent years, additional research has helped show what may cause the dysfunction and why children like Braden suffer.

SID is generally defined as the inability to process some information received through the body's sense -- smell, sight, sound, touch and taste, along with the body-center senses of interoceptive (from internal organs, like heart rate or digestion), tactile (received primarily through the skin), vestibular (sense of movement, gravity and balance) and proprioceptive (feeling in muscles, ligaments and joints).

In their 1996 book, "How Does Your Engine Run? A Leader's Guide to the Alert Program for Self-regulation," occupational therapists Mary Sue Williams and Sherry Shellenberger likened the brain's ability to locate, sort and order those senses to a traffic policeman directing cars.

In people with SID, the policeman isn't doing his job.

Researchers say children will often adopt a fight, flight or fright reaction to an overload of sensory information. In a crowded room, a child may drop to the floor and cry because the noise of so many people is too overwhelming. If forced to wear an uncomfortable shirt, a child may strike out at the person dressing him.

The options for treating the disorder are similar to those used in other neurological disabilities. Occupational therapy. Developmental therapy. Speech therapy. Special diets.

But parents like the Webers say education of the public is something that would help their situation just as much.

"So many people don't know about this," said Jennifer Weber. "People just think of him as a brat. We usually don't take him anywhere because of that."

There is no long-term prognosis for Braden and other SID children. There is a chance they'll outgrow some of the symptoms, or the symptoms may become worse. With therapy, though, Braden has gained some speech and now walks. He's also starting a gluten/casein-free diet that his parents hope will help as well.

Weber said parents who notice a lack of development in fussy children should also keep an eye on what triggers their tantrums.

"If a child acts out all the time, look at it as more than just a behavioral issue," said Weber.

Sandra Nelson, author of "Sensory Integration Dysfunction: The Misunderstood, Misdiagnosed and Unseen Disability," contributed to this report.

cmiller@semissourian.com

335-6611, extension 128