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
By Cathy Trost, Special to The Washington Post. Thanks to Beth Sigall
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?
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