Social - October 2003

Coming to their senses

Published October 3, 2003

Click to enlarge

Click to enlarge

Diagnosis leads to therapy for sensory disorder in brother, sister

By DIANE TURBYFILL, Staff Writer

————————————

The continuous crying in the Beam household has finally stopped.

At long last, Ryley, 2, and Jaycie, 4, have received the diagnosis they need to be happy, healthy children.

Chesanie and Rusty Beam’s children have sensory integration dysfunction (DSI), a sensory modulation dysfunction resulting in over or under response to sensations.

The road to recovery has been a windy path with a rewarding outcome.

Years of tears

Jaycie was always a timid child. She clung close to her mother. She was afraid of the swing, and she liked to stick to routines. Her parents took her behaviors to be normal childhood phases.

Ryley was born when Jaycie was two.

“He just seemed to cry excessively just right after birth,” says Chesanie. “He screamed forever.”

Despite nurses opinions that Ryley would calm down, he didn’t.

“As a baby he just literally cried all the time,” Chesanie says.

Chesanie and Rusty took their son to see several doctors. He was tested for various diseases and conditions searching for the cause of his continual crying.

Pediatricians ruled out many medical conditions. Autism was dismissed but the idea of ADHD was considered. The tests continued.

Ryley’s screams and cries consumed the family.

Jaycie quietly developed her own behaviors.

She became obsessed with wearing pajamas whenever she was at home, carrying a tissue wherever she went and clinging to her baby doll. If she was not pacified with these crutches, she would crumble.

The doll had a place in the car and on the couch at home. Boxes of tissues were nearby to satisfy Jaycie’s needs.

“Rusty and I would do everything for her to keep her from breaking down,” Chesanie says.

Jaycie would also wake every night in a panic.

Chesanie remembers the limitations that her children’s behaviors put on their lifestyle.

“We didn’t do anything — we didn’t even go out to eat,” says Chesanie. “If people wanted to see them or us, they came to our house.”

Neither of the children ever wanted to leave her side. Even working part-time was devastating to the children but offered a necessary escape.

Ryley avoided being touched by most people, including his father and grandparents. Screaming fits ensued when simple tasks had to be tackled — getting dressed, riding in the car, getting a haircut.

“The only peace we got was when he slept; he loved to go to bed,” Chesanie says.

Searching for answers

Pediatricians eyed many diagnoses but none seemed right.

The first piece of the puzzle came from an article in an area newspaper.

The story, published in January 2003, described children suffering from DSI who were treated at Pathways for Learning, a pediatric occupational therapy group in Charlotte.

Chesanie quickly picked up a book about the disease, “Out of Sync Child.”

“I read the whole book in like one night,” she says. “As I was reading this book, I was thinking this was Jaycie to a T.”

The family went to see a neurologist where Ryley was diagnosed with SDI in February. Jaycie’s diagnosis followed.

A sensory diet

Jaycie and Ryley started therapy two times a week.

Things were slow going in the beginning.

“(Ryley) acted his typical self. He just screamed for about 45 minutes and the session was an hour,” says Chesanie.

Rusty and Chesanie helped their children through therapy at the center and at home.

“You have to do it at home to be successful,” she says.

The family follows a sensory diet which includes activities such as brushing their child with a surgical brush and allowing them to jump into pillows. Swings and ramps have been added to the Beam’s household to increase activity.

Therapy has been reduced from twice a week to once a week. At home therapy has also lessened to one time a day.

No medications have been needed to make miraculous changes in their lives.

Success at last

The Beams noticed a difference in their children as soon as therapy began.

“Things just instantly started changing,” Chesanie says.

Only six months since therapy began, Ryley can now attend preschool. He still is not fond of wearing shoes, but he no longer fears contact.

“Now he’ll touch anything,” says his mom.

The constant crying has stopped.

Jaycie has shed her tissues, pajamas and baby doll. She now sleeps through the night and is not the quiet, withdrawn child she once was.

For the first time she is testing her boundaries.

“It’s just what she should’ve done at two or three,” Chesanie says.

The family took their first vacation last summer to the beach — three times.

Each visit offered a different sensory experience. Chesanie laughs when talking about their first visit when they had to stay on dry sand. Their next visit they ventured on to wet sand. By the third visit, the children explored the “noisy water.”

“That’s a perfect place to take them for a sensory workout,” she says.

© 2001 Lincoln Times-News  

Terms and Conditions