Enter the Therapy Zone

The Washington Area Is a Major Center for Innovative Treatments for Children With Stubborn, Baffling Neurological and Behavioral Problems. A Veteran Reporter -- and Former Customer -- Investigates

At the Spectrum Center, listening therapist Alison Welsh helps Jacob Yount, 5, read. The Washington area is a major center for innovative treatments for children with neurological and behavioral problems, but do they really work? (Lucian Perkins - The Washington Post)

The Spectrum Center is in an aging office building in downtown Bethesda, but for the parents of children with developmental delays and learning problems, it's a little piece of Lourdes.

The office is filled with anxious parents and children who have come to try a therapy called Tomatis, named after the French eye, nose and throat doctor who invented it. There are families from out of town living in motels on Wisconsin Avenue or on Rockville Pike so their children can do "loops" of Tomatis therapy at the center. A loop is two hours a day for 15 days, followed by a break, then back for two more sessions of eight days each with a break in between. The cost for an evaluation and treatment is $6,800.

Tomatis involves a special device called the "electronic ear" that "reprograms" the ear through sound stimulation. The price has gone up since my daughter had it several years ago, but little has changed about the therapy itself, which combines auditory stimulation with sensory integration therapy. Benefits are said to include increased attention and concentration, better auditory discrimination, better speech articulation, and improved organizing, reading and writing skills.

I am a responsible parent. I'd spent years training a skeptical eye on far-fetched claims as a reporter for the Wall Street Journal. Yet there I was, signing a big check, pushing my very reluctant youngest daughter toward a room filled with floppy children tethered to headphones.

We had become official residents of Therapyland, a place familiar to any parent with a child who has problems, a theme park that woos you with the notion that the brain can be rewired and children's futures can be shaped. There are no guarantees here, just big bills, big hopes and big questions.

And the biggest question is: Does any of this stuff really work?

In the Beginning . . .

Thirteen years ago my youngest daughter was born two months early. Maddie had some medical problems, and we took care of them.

Three weeks of bulking up in the neonatal intensive care unit followed by wild nights at home when Maddie's breathing monitor set off so many false alarms that her father disconnected the machine and slept in her room for months.

Many panicked runs to the emergency room as she barked like a seal and sucked for air with croup and respiratory problems, and hours lying in oxygen tents. CAT scans and X-rays and EKGs. Before her first birthday Maddie had surgery to close a hole in an artery near her heart.

Then came another terrifying week when geneticists suspected (wrongly) she might have a rare metabolic disorder that would slowly retard and disfigure her. We bagged her urine and sweated the test results from the Mayo Clinic.

In what passed for normal family life at home, she wasn't hitting the developmental milestones that her older sister had nailed effortlessly. She crawled and walked and talked late. She didn't babble. She didn't like sleeves, and constantly pushed them up her arms. She didn't like having her hair brushed. She didn't ask questions at all.

Developmental pediatricians at a Georgetown University Hospital clinic diagnosed her with low muscle tone, poor motor planning and delayed speech. Later she got a new diagnosis called sensory integration dysfunction, a kind of "traffic jam" in the brain involving a malfunction in the way information about a child's body and surrounding world is processed through their senses.

In the early 1990s, when we were in the eye of this storm, I'd never heard of sensory integration. It sounded odd to me, like a civil rights movement for the senses.

Occupational therapist A. Jean Ayres had published her seminal work on sensory integration in the 1970s. But the condition did not gain widespread notice until the 1998 publication of "The Out-of-Sync Child" by Carol Kranowitz, a music and movement teacher at St. Columba's Nursery School in the District. Playgrounds were not yet peppered with parents comparing notes on kids who hated certain food textures or couldn't wear shirts with scratchy labels.

As Maddie grew, we acquired speech therapists, occupational therapists and physical therapists. They stimulated her vestibular system, integrated her sensory system and decreased her tactile defensiveness. They taught us how to brush her skin in a special way and roll her up in our frayed Oriental rug to apply tactile stimulation.

I went to a tire store on Georgia Avenue and bought a truck-sized inner tube and attached it to the basement ceiling so Maddie could spin and stimulate her vestibular system, which takes in information about balance and movement via the neck, eyes and body. We massaged her skin with lotion and rubbed the inside of her mouth with washcloths. She blew hundreds of cotton balls across the table with turkey basters to exercise her grip.

Over the years, while keeping up the basic therapies, we went out and bought more. She did the Tomatis therapy, which we thought triggered big changes. We added a software program designed to develop fundamental language skills called Fast ForWord, a reading method called Phono-Graphix and Earobics, a software program that taught "the listening skills required for reading success."

Today, Maddie is amazing. She is in a regular class at school, just one grade behind her chronological peers. She reads voraciously, writes well enough to have a short story published in a national student anthology and plays goalie on a soccer team. Her problems stemmed from prematurity and were minor compared to most.

Yet we still wonder: What really helped? Which therapy was best? Would she have done so well without them?

Welcome to Therapyland

The marketplace of therapies and interventions for children with learning disabilities and developmental delays is booming.

Fueled by research on the brain and how children learn and relate to the world -- and responding to the soaring numbers of children diagnosed with everything from dyslexia to autism -- there has been a growth spurt in techniques and programs to help children with speech and language delays, reading difficulties, attention problems, sensory and auditory processing deficits, movement and motor planning problems, and emotional, social and organizational issues.

They include interventions like Interactive Metronome, Brain Gym, Lindamood-Bell, Pace (Processing and Cognitive Enhancement), auditory therapies, vision therapy, social skills therapy, neurofeedback, ABA (Applied Behavioral Analysis) and the DIR (Developmental, Individual-Difference, Relationship-Based) model, which features a practice known as floor time.

Yet few parents realize that the effectiveness of some of the most popular therapies, like sensory integration and auditory integration therapies, is being questioned. And many of those who know don't care. Many are willing to try unproven interventions -- as we did -- because of promising anecdotal evidence, but they worry about making the right choices.

The Washington area has become a therapy destination -- a target not only for local families but a draw for parents from all over the world who seek evaluations and treatment from prominent professionals like Bethesda child psychiatrist Stanley Greenspan, Silver Spring psychologist Serena Wieder, the Washington-based Vision and Conceptual Development Center's Harry Wachs, the Bethesda-based Spectrum Center's Valerie Dejean and Parviz Youssefi, who runs the GMS Institute's Sensory Motor Integration division in a giant gym in Manassas.

Some children have their own nutritionists who prescribe special supplements or diets and psychiatrists who prescribe medicine for concentration, anxiety and depression. Parents hire behavioral consultants to hide in their homes and observe family dynamics, and organizational consultants who teach kids strategies for test-taking, studying and organizing their backpacks. There are $100-an-hour consultants who will help you build a sensory-motor gym in your basement, and outfit you with special therapeutic equipment, blankets and clothes. In a search for new customers, revised versions of some therapies are marketed to "neuro-typical" kids and adults to help enhance performance and sports skills.

To be sure, many poor children are never properly diagnosed with learning problems, much less treated for them. Without money and health insurance coverage, many of these therapies are out of reach, and insurance coverage varies. Federal and state special education laws mandate early intervention and school age services, including evaluations and some therapies, for eligible children, but problems plague many systems and parents often end up fighting for their child's needs or supplementing them with private services.