Easter Seals Therapy Center, Grand Rapids

At Wendi Cuson’s busy clinic, preschoolers don’t even know they’re in therapy. And that’s a big part of why it works for kids like Garrett, Michael, Sophie, Cory and Adrian, all diagnosed with variations of sensory integrative dysfunction, a complicated nervous system disorder marked by the brain’s failure to properly process input from the senses.

So far as the kids know, Wendi’s is a magical place where they swing freely in hammocks, leap into pits of colorful balls, work on giant jigsaw puzzles and just hang with pals.

For their parents, however, Wendi’s place – the Easter Seals Regional Children’s Therapy Center, a single-story, cinderblock building on the east side of Grand Rapids – is a godsend. And so is Wendi, 34, the occupational therapist who runs Easter Seals’ summer sensory “camps” to help kids learn to manage their disorder, which can wreak havoc on school, social and family life.

“She is so encouraging, so capable of reaching these children. We all just want her to move in,” said Deb, mother of Michael, 6, who completed his second camp session this year. The Grand Rapids mother is disappointed that next summer he’ll be too old to enroll in the camp, which meets four mornings a week for 2-1/2 hours. But she’s also thrilled by her son’s progress, which she attributes to the work of Wendi and her Easter Seals colleagues.

“Just in terms of his ability to transition – before, if you were doing a craft project and told him it was time to stop and clean up, he’d have a screaming fit,” she said. Not any more. In part thanks to the influence of the camp, Michael attends mainstream school and follows an Individual Education Program plan.

For Garrett, 2-1/2, “Instead of just one word at a time we’ll have five. Or he’ll repeat after us. Before it was like he knew he couldn’t speak well and didn’t have the confidence to try,” said Garrett’s mom, Kelly. She drove 2-1/2 hours round trip to camp, seeing to it that Garrett never missed a minute in the week of sessions he attended thanks to financial assistance from Easter Seals.

Sensory integration therapy, as Michael’s and Garrett’s experiences suggest, aims to achieve a series of small developmental steps that occur imperceptibly in non-affected children. Cuson assesses each child’s needs and suggests a customized “sensory diet,” or recommended daily activities, to help the child learn to focus.

“Our agenda is to help these children learn to regulate themselves, to be able to tell us what their needs are,” said Cuson. “For example, I had a boy who was a sensory-seeker when he first came to camp last year. He would jump around and bang into things. He wasn’t safe. This year we’re not seeing that. He’ll come to you and say ‘I need the weighted blanket.’ Therapy helps them to know how their body is reacting.”

That sensory dysfunctional children can be soothed by draping specially designed weighted blankets around them or by vigorously brushing their bodies for a few minutes every two hours with plastic brushes, a practice called deep pressure and proprioceptive technique (formally known as the Wilbarger Protocol), suggests the subtle yet pervasive nature of their disorder, which is frequently accompanied by autism, Down syndrome and related developmental disabilities.

Sensory integration dysfunction runs the gamut from extreme sensitivity to lack of it.

“I like how Julie Wilbarger, whose work influenced the Deep Pressure and Proprioceptive Technique, put it when she described those with extreme sensitivity,” said Wendi. “She said it is like going through a parking lot late at night, when you’re totally in tune with everything going on, on high alert.” For such children even a clothing tag or the air’s breeze feels like “a massive spider on their skin.” That could be true of any of the senses, including senses of balance and movement.

At the other end of the spectrum, children are like the “sensory seeker” above, going all out in order to feel something, even slamming into walls. “They’ll give you huge hugs, practically knocking you down,” she said. “Or they’ll write really hard because they can’t judge the feeling of a pencil…They might not be able to tell if they have food on their face or not.”

Sensory dysfunction can be socially disruptive and is often readily misread – or “judged” – as a severe behavioral problem.

Or the result of bad, neglectful parenting. Just ask any of the summer camp moms about The Look. In grocery stores. From teachers. From other parents. From in-laws. From anyone irritated by screaming, extreme hyperactivity, biting, hitting, toileting issues, general fussiness.

“We’d go to a restaurant and wonder what it was that was scaring him,” said Garrett’s mom, Kelly. “Maybe it would be a plant sitting on a ledge. I’d say to my husband, ‘Did he get a bee sting?’ Or we’d have to move to an entirely different section so he couldn’t see a wreath overhead. People would sit around and wonder ‘Why are you pinching your kid?’ Or thinking he’s such a brat. But it wasn’t that. He was scared.”

At Easter Seals camp, such judgments are left at the door.

“The kids aren’t pegged,” said Shannon, whose autistic son Cory is 7. “It’s not as if ‘because Garrett can do it, Cory should.’ Cory wouldn’t let me leave for the first two weeks; it was as if the umbilical cord was still attached. But Wendi said it was OK, that we were working for Cory. Two weeks later, I was able to leave.”

That was the beginning of a host of changes in Cory, who now loves to leave home with the family, tag along with his older brother to play outside, even take turns. And he knows to tell his mom when he needs a break or a timeout with his heavy blanket.

“Last week we went to the beach for two hours, which would have been impossible,” said Shannon. “I mean, I wasn’t exactly rotating in the sun but it was a lot better than before.”

Sheree’s daughter Sophie, 7, has been attending sensory camp for four years. A child with Down syndrome and a variety of sensory deficits, she’s also physically weak as a result of numerous surgeries to repair a heart defect before she was 3. Sheree, of Grand Rapids, remembers being relieved after the first week of camp: “They kept her and I thought, ‘This is going to be good.’”

What she didn’t know at the time was that Sophie screamed for much of the first week and that the program came perilously close to excluding her as beyond even their ability and patience.

“Then they asked themselves, ‘Where would she go?’” recalls Sheree.

Sophie still does not speak, though she seems on the verge. She spent this past year “learning how to sit for a half hour,” as her mother put it, in a mainstreamed program. Yet she revels in time spent playing around other children, even if her interaction is limited. She knows how to wait her turn in line and she’s learning how to use toys and utensils properly. She doesn’t seem as fearful around others.

“I know my child will never function ‘normally’ because she has Down syndrome and is developmentally delayed,” said Sheree. “My goal is that she be happy in most environments, that she develops self-care skills so that she’ll be able to live the life that God has asked her to lead.”

Parents of Easter Seals sensory campers say they learn the concept of putting their children on a “sensory diet” that might include a wide range of strategies – everything from installing a mini-trampoline to body brushing with a special plastic brush – in order to either modulate or generate sensory input so the children can achieve enough equilibrium to focus on what they need to do.

“You don’t necessarily see the change happening on a day-by-day basis. It’s like watching somebody lose 20 pounds,” said Deb, Michael’s mother.

Sensory camp, as these children’s stories suggests, is at once tailored to the individual and a diverse group.

“That’s the beauty of the Easter Seals approach: it serves a wide range of problems, not just those who struggle academically,” said Kathleen, a Grand Rapids teacher and mother of Adrian, 4. Since coming to camp for a week and attending individual therapy sessions with Wendi, Adrian’s emotions are more controlled and his eye contact has improved, according to his mother, who said he will attend mainstream school.

To Wendi Cuson, who has worked for Easter Seals for the last one and a half years, her apparently exhausting and demanding work offers deep satisfaction.

“It’s incredible how the brain is referred to as being plastic,” she said. “Which means you can almost rewire it, which is why it’s so great to be able to reach these kids while they’re so young.

“Sensory integration is an area where you can see absolutely beautiful changes in things like impulsivity control and other areas of self-regulation. If you can catch it early enough people can have a much better chance of success in school and in life.”