Enter the Therapy Zone

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)

But for those families who have resources, the problem isn't a lack of choices, but too many. More parents are serving as their own case managers, buying therapies with little guidance about which interventions are backed by credible research. Sometimes they get help from a trusted pediatrician or therapist or educational consultant, but many rely heavily on word of mouth, Internet research and their own instincts. Desperate to help their children and increasingly counseled to intervene early and intensely, they are vulnerable to each new "magic bullet" and "miracle" story circulated by a vigorous parent network.

Inside the Brain

Children who have problems with learning and language, or processing the information they receive through their senses, or controlling and using their muscles correctly, or relating socially and emotionally to each other, often have underlying neurological problems that in previous times were dismissed as slowness or stupidity or even retardation. A recent explosion of research about the brain, emotion and development has launched a new age of innovation.

"There are so many children who have a variety of difficulties with learning, and parents who are very eager to explore potential treatment options," said Adrian Sandler, chair of the American Academy of Pediatrics Committee on Children with Disabilities. "There is a wealth of information out there to help direct parents in various ways. Certainly some of that information is of uncertain quality, but on the whole it's a good thing that there is an array of treatment options."

Research has produced new discoveries on the mechanisms underlying dyslexia and other reading problems and generated strong consensus about effective reading treatments that are increasingly available in the marketplace and in some schools.

A study published last year in the journal Neurology showed that intensive intervention with the Phono-Graphix program and the Lindamood-Bell Phonemic Sequencing Program, two therapies available locally, produced significant reading skills improvements in dyslexic children and actually showed dramatic changes in their brain activation patterns.

"Some of the most effective remedial work in reading in the United States is being done in these private clinics by private providers," said Joseph Torgesen, director of the Florida Center for Reading and Research, a university-based center that is reviewing reading programs to determine if they are consistent with current scientific research (evaluations at www.fcrr.org).

But experts like Torgesen and G. Reid Lyon, chief of the National Institute of Child Health and Human Development's child development and behavior branch, say there are many hyped-up claims, and parents need to review the research underpinning treatment programs.

Said Lyon: "Parents should ask, 'Was there a control group? Has the therapy been used with youngsters who have difficulty similar to your child? Have those individuals been studied with rigorous scientific methods?' "

Some experts argue that some therapies are valuable even without gold-standard scientific evidence.

"I certainly feel much more comfortable referring people to treatments there is research support for, but on the other hand, it took at least 50 years to try to demonstrate that psychotherapy had any benefit," said William Stixrud, a Silver Spring clinical psychologist with a major neuropsychological practice.

It's so common for a child to be diagnosed with a learning disability, developmental delay or behavioral disorder these days -- as many as one in three kids are, say some experts -- that the culture has undergone a major shift, from hiding the condition to obsessing about it.

"I don't know a family personally who has three kids that one of them hasn't been diagnosed with a learning disability or ADD," says Stixrud.

See "Team Hailey," beginning below, left column.

Team Hailey

It's been awhile since we were on the therapy circuit, but I was astonished at how many services are available now, and how many claims there are for success.

I found a mother who agreed to let me observe her daughter as she followed her weekly schedule. (They asked that their last name not be used to protect their daughter's privacy.) The extent of the family's effort is extraordinary, but it illustrates the range of treatments available and the challenges parents confront as they try to determine what works.

I met Tina and Hailey at Dynamic Development Pediatric Services in Bethesda, a small center run by audiologist Lisa Leyden and occupational therapist Michelle Harris. They offer a menu of choices, including listening programs, occupational therapy, neurofeedback, Interactive Metronome, Fast ForWord, Phono-Graphix, individual "sensory diet plans" and handwriting programs.

Tina, a former nurse, and her daughter, Hailey, who is 10, live in a suburb of Philadelphia. When I met them, they were spending three to four days in Washington every week so that Hailey could get 15 hours of intensive, coordinated therapies which her parents consider to be better than any they could get at home. They were home-schooling her so that she could have a flexible schedule.

Tina and her husband, Jimmy, an oral surgeon, were spending about $6,000 a month on therapy services and the monthly rental of a studio apartment on Connecticut Avenue so they could live close to the practitioners. (Since I spent time with them, Hailey has started attending a Washington area private school for children with learning disabilities while following a modified version of her therapy schedule.)

"It's never one approach. It's never one thing that does it," Tina said. "Something lays a foundation for others to build on -- to make the child more available."

"My husband says it's like a big round boulder. You hit it once and you've got big pieces of rocks. You've got the auditory piece, the social/behavior piece, the visual piece, the movement/motor piece, the sensory piece and the nutrition/diet piece. You just keep hitting that rock until you pulverize it into sand."

On a typical Wednesday, Hailey started with three hours of therapy at Dynamic Development, and then did two hours of language and reading therapy at Metropolitan Speech Pathology in the District. At 3 p.m., she headed for Manassas for an hour-long "sensory-motor integration" class at the GMS Institute.

Hailey has long chestnut hair and cotton-candy-pink nails. She wore a lavender sweater and jeans. Her socks had little cats on them. She has pretty eyes that are often difficult to see because she has the habit of looking down.

Tina has organized the back seat of her car as a kind of mobile command post for Hailey. There is a portable DVD player so she can watch videos ("Fantasia" is her favorite) on long drives. There are books, snacks, bottled water and two Game Boys. There is a set of special Sennheiser headphones to listen to SAMONAS (Spectrally Activated Music of Optimal Natural Structure) CDs that Tina purchased to supplement Hailey's auditory training.

Tina maneuvered onto I-66. She knows that some people might criticize her, but "knowing that Hailey is getting the appropriate therapies down here is a lot easier for me than to stay in my house, be comfortable and have to fight with people to do what I think is right for her. It's easy to be with people on the same page that are pushing toward the same goal. Succeeding is in their agenda. Nothing else will work except for us to succeed."

Though Hailey was diagnosed with expressive aphasia, or impaired speech production, and left side hemiparesis, or weakness on one side of the body, Tina and her husband suspected her problem was more complex.

They started an intensive program of occupational, physical and speech therapy in the Philadelphia area. Discouraged by Stanley Greenspan's waiting list, they secured an appointment with his Silver Spring colleague, psychologist Serena Wieder. Hailey was eventually diagnosed with sensory integration dysfunction disorder and severe auditory processing deficits.