Locally manufactured device offers hope for children with multiple disabilities
What if it was just a matter of dollars and organization to get the devices to the children who need them?
Forget the what-ifs. Something called SOS is the real deal for certain children with severe, multiple handicaps.
Consider Tristen Recob, a 12-year-old student at Janesville’s Marshall Middle School. Tristen’s vocabulary is limited to a few words, such as “hi” and “here we go,” said his teacher, Sara Vold.
Tristen can move his hands and feet, but not much. His vision is limited. He is pushed around in a specially designed wheelchair.
About six months ago, Site of Senses entered Tristen’s life.
SOS looks like a small, three-walled playpen that is placed over the child’s head and torso.
Simple toys hang from the roof, dangling within reach.
The child lies on a hard floor designed to amplify noise and vibrations.
It sounds simple, but it can make a world of difference to kids such as Tristen, as well as kids with sight and vision problems.
The SOS doesn’t help all kids, but Tristen is one of the lucky ones. Put him inside, and he transforms from someone who doesn’t seem focused on anything to a child at play.
He smiles. He is animated, excited. A sound like laughter bubbles out of him.
“When he’s in there, he’s like a different kid. He has so much energy,” Vold said.
Hanging from the ceiling of the SOS are Mardi Gras beads, a bag of marbles, an aluminum pie pan, a plastic beach pail, a rattle, a set of measuring cups, a heavy iron chain hanging inside a tin can, sleigh bells, wooden spoons.
Tristen liked it right away, Vold said.
After many months of use, children who use such devices have developed greater abilities to move their limbs, to communicate.
“For some of our kids, just getting them to turn their head is a big milestone,” said Sue Prosser, a special-education teacher at Franklin Middle School, which first piloted the SOS.
“The more activity they do and the more active they are, the better quality of life they’re going to have,” Prosser said. “The more they can communicate with us, the more they can express emotions.”
The SOS is not new. It’s an adaptation of ideas that have been around for years, said David Brookhiser, whose Table Innovations Inc. produces the SOS.
Lilli Nielsen, a Danish psychologist and teacher of the blind, developed something called the Little Room in the early 1980s. Brookhiser calls her “one of God’s saints walking around on the Earth.”
Trouble is, the Little Room can cost upwards of $2,800 from its exclusive North American supplier, the nonprofit Lilliworks Active Learning Foundation.
The result is that relatively few of the children whose lives could be improved have access to the device, Brookhiser said.
Over the years, people have built their own versions based on the Little Room, often using plastic pipe. Those versions, like the Little Room, remained cumbersome to set up and move.
A few years ago, Brookhiser heard about the advantages and disadvantages of the Little Room and the lack of opportunity for kids to use one.
Brookhiser has designed and marketed other devices that help people with disabilities adapt to their environments. He soon was intrigued with the prospect of making Nielsen’s ideas more accessible to children.
Brookhiser is a one-man company. He designs the devices and runs the business from his shop in Janesville, farming out assembly and other tasks to organizations that employ people with disabilities, including VIP Services of Elkhorn and Riverfront of Janesville.
After a number of prototypes and input from people such as longtime teacher of the visually impaired Nancy Smith of Janesville, SOS was born.
Smith remembers when the Little House first arrived. She attended seminars. She saw how it helped children grow in their ability to affect their environments, even after they had not changed for years.
When nothing else had worked, the Little Room did. Smith used the word “miracle” to describe it, and she is not alone.
“It seemed like it was the greatest thing, but people just could not afford it,” Smith recalled.
Brookhiser now produces the SOS at a cost of about $500. It’s made of wood and Plexiglass, screws and metal hinges. It collapses so it can be carried in two large canvas bags. Velcro and elastic fasteners make it easy to set up and take down.
But $500 is just enough to allow Brookhiser to produce them. If he sold them commercially, he’d have to mark up his price by 45 percent to a catalog or retail marketer, who would tack on another 40 percent, he said.
Enter the Janesville Kiwanis Club.
Brookhiser convinced the local chapter to take on the task of supplying an SOS to every child who needed one in the Janesville area. They began to do so over the past year while encouraging other Kiwanis clubs in Wisconsin and Upper Michigan to do the same.
Brookhiser estimates that 500 to 600 SOSes would supply Wisconsin’s needs.
The Janesville School District has embraced the project, and six schools now have SOSes, Brookhiser said. Plans are to expand in the coming school year.
The Janesville Kiwanis Club designated $5,000 for the project this year and another $5,000 next year. The devices at first will be donated to schools, and eventually they’ll be given to families so kids can used them at home as well.
Smith says kids should use the SOS three to four times a day, 20 minutes at a time, and that means having one available at home.
Kiwanis member Ed Pulliam calls the SOS the best hope for children with multiple, severe disabilities to interact with their environment.
“It serves a portion of the populations that I think is underserved,” Pulliam said.
Hopes are for enough success in Wisconsin that Kiwanis International will make this a worldwide service project.
Meanwhile, a new world of fun and exploration has opened up for children such as Tristen, who seemed in seventh heaven when observed in the SOS recently.
As the child gets used to the SOS, new items are hung from the roof, attached to elastic bands. That encourages the child to explore and to move his body in new ways—a great accomplishment for many that can help improve range of motion as well as brain development.
“It’s the success that really drives these kids on,” Smith said.
“This is an opportunity for a lot of good people to do a good thing that really needs to be done,” Brookhiser said. “And this is the only way it’s going to happen.”
Last updated: 9:47 pm Thursday, December 13, 2012