Forum offers help for kids with sensory issues

In her work with children, occupational therapist Lindsey Biel pays close attention to body language. She was just as attuned to the parents and teachers in her audience at the Second Annual Special Needs Symposium at the JCC of Central New Jersey on Feb. 13.

“People were listening in almost complete silence, just nodding their heads,” she told NJJN afterward.

Biel is coauthor with Nancy Peske of Raising a Sensory Smart Child: The Definitive Handbook for Helping Your Child with Sensory Processing Issue, and has a practice in Manhattan. Though she peppered her talk with humor and reassuring comments, it was clear she was touching on issues painfully familiar to members of her audience.

She talked about children inclined to go hungry rather than swallow food with a texture they find repulsive, or who rip off items of clothing that have a tag or rough seams, or who weep when a vacuum cleaner is turned on — but can totally tune out a parent’s voice.

She also reminded her audience that even beyond this supportive community, they are not alone. In regular classes, she said, there is always at least one child with sensory issues. In self-contained classes, the rate varies between 50 and 80 percent; in classes for autistic children, it is between 80 and 100.

Asked about the incidence of sensory processing problems, Biel said it does appear to be growing, both because of greater awareness and monitoring, and as a result of factors like harmful chemicals and the intensity of modern living. When she speculated that conditions in New Jersey might be mellower than in Manhattan, where she lives, those around her insisted that even in these suburbs, children face increasing stress.

The difference between normal sensitivity — with the neurological system providing reliable, accurate information — and problematic hyper- or hyposensitivity is a continuum, she pointed out. Sensitivity can vary, affected by context, health, stress, and time.

“And your child will change,” she said. She pointed out that Dr. Temple Grandin — the subject of an HBO movie chronicling her early diagnosis as a person with autism and her success as an expert on animal behavior — described herself as “a wild animal” as a child. Though sometimes exhausting to be with, Biel described the adult Grandin — who wrote the introduction to Biel’s book — as “amazing and wonderful.”

The question, Biel said, is how far to push one’s children, and when to accommodate them. She urged parents to listen to their kids — to take note when they say that light or sound or touch hurts them — and to get everyone on the same page, including teachers and grandparents.

One way to do that is to provide checklist information on a child’s reactions. Her website, sensorysmarts.com, offers such a questionnaire, in addition to all kinds of resources for therapists.

While keeping things in perspective, she told them not to allow ignorant people to minimize the challenges they face. “Our kids do need our protection,” she said, “and don’t let anyone tell you otherwise.”

‘You’re not alone’

The symposium drew a capacity audience of more than 115 people. Up until three days before the event, the response looked so low, organizers were worried — but then registrations came flooding in.

Surveying the assemblage, Lori Sternberg said, “It’s great.” She organized the event together with Amy Kolchinsky, Amy Ash, occupational therapist Cheryl Lentzner, and Mike Goldstein, the JCC’s program director.

Around 20 children who had come with their parents were entertained and cared for in the center’s Early Childhood wing. For those who needed it, there were “shadows,” or individual helpers.

The event began with a lunch in the JCC’s Weinberg Pavilion. A number of participants welcomed the opportunity to network, saying one of the most important aspects of the program is the mutual support with other parents dealing with similar challenges.

“It’s so comforting to know you’re not alone,” said one woman who has a special-needs child. “We were actually able to laugh about things with people who are in the same boat.”

The room was ringed with displays — from agencies and vendors of services and products relating to special needs. A mini-concert was performed by youngsters from the Music Connection, the program for special needs families run by the NJ Workshop for the Arts in Westfield.

Biel’s talk was followed by two breakout sessions, with talks dealing with issues from socialization, to legal rights in the education system, to financial planning. The program ended with a screening of the award-winning documentary Autistic-Like: Graham’s Story.