Imagine a child's world without basic senses: hearing noises, tasting foods, seeing a familiar face, feeling textures or smelling scents. These are foundations of rich childhood memories. Worse yet, imagine the opposite. What if one, or all, of these senses were on such a high, turbo-charged setting that even the slightest whiff of, say, pancakes on the griddle caused a gagging reflex?
But a child with dysfunctional sensory integration has a hard time coping
with basic tasks, such as wearing a shirt, because, as one 4-year-old girl
said, "It's too spicy inside." Brushing teeth or washing hair can turn
into a wrestling match, leaving parents exhausted and kids frustrated.
Toilet training is a nightmare.
The way our senses interact with our body and brain is extraordinary. But children with sensory problems "vacillate between states of over- and under-stimulation." As a result, they tend to withdraw to avoid uncomfortable situations or, if pushed, may act petulant or bad. Dysfunctional sensory integration has been on the occupational therapist's map for decades. But until recently, the psychological and medical world has misunderstood or ignored what could be a key ingredient in the diagnosis and treatment of children who miss developmental milestones or demonstrate odd or "naughty" behavior.
These are kids who end up in the school office, take their parents to the end of their rope, get teased by their "friends," get diagnosed with attention deficit disorder or even a conduct disorder. But they don't get better with medicine, psychological treatment, school support and loving parents: the gold standard of care.
Is the diagnosis and treatment of DSI/SPD the missing notch on the key that will unlock the door for these often isolated children?
Karen Gouze, a child psychologist, was Karen Smith's clinical supervisor at Children's Memorial Hospital in Chicago in 1984. The two women, then in their mid-20s, became best friends and worked side by side for five years treating children and their families.
Now years later, married, still practicing child psychology and living in different states, the two had given birth to sons a few years apart. It was soon clear that both boys had serious sensory processing problems. Yet the mom-experts were frustrated with the answers they were getting from their own profession and the medical community. Their boys were just not getting better.
"We were using all that we knew as psychologists and advocates for kids," Smith said at a recent psychotherapy conference in Washington. "We had to look beyond traditional medicine and into the occupational therapy world to find the missing link. Both of our kids are doing very well after putting treatment for DSI into the equation."
The child psychologists, now 20 years into their careers working as clinicians and professors of psychology at Northwestern (Gouze) and the University of Georgia (Smith), teamed up to write "The Sensory-Sensitive Child: Practical Solutions for Out-of-Bounds Behavior" (HarperCollins, $24.95). Both strongly believe that a significant number of children are in trouble because they are not diagnosed with that missing link - they just can't process basic sensory information.
The book balances stories from parents with information on brain function and sensory processing difficulties. Their "sense-able parenting" approaches have been tested and work.
But where is the research? Since 1995, Lucy Miller, associate professor of pediatrics at the University of Colorado Health Sciences Center, has been doing the world's only research on this newly explored disorder. Two years ago, Miller received a grant from the National Institutes of Health to add three more labs around the country. But her funding is drying up. Her mission is twofold: To show that DSI is real and should be listed in the Diagnostic and Statistical Manual of Mental Disorders. And to show that treatment works.
"We have pilot data that shows that kids with DSI respond well to occupational therapy," Miller said in a phone interview. "But we need more funding to investigate treatment plans that will prove solid empirical data. Some don't think DSI is real. It's a 'hidden handicap' that has profound effect on kids and families. We have a dysfunction without a diagnosis. You can't imagine the frustration."
Gouze and Smith have felt that frustration on the home front. Their book is a solid manual of hope for countless kids with DSI and their families. Let's hope the funding and research keep up.
(Reprinted with permission from the author, 2005)
About the author: Polly E. Drew is a marriage and family therapist and freelance columnist for The Milwaukee Journal Sentinel. She may be contacted via email at: email@example.com
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