Cerebral palsy has stiffened the muscles in 3-year-old Steve Bustamante’s arms and weakened those in his hands, which makes it tough for him to grip a toy like other children his age.
But nothing has diminished his desire to play with toys. His mom, Juana Briseno, wants to find a way to make that possible, because she wants him to have fun and because play is critical for his development.
All children use play to develop everything from imagination and language to social skills and muscles —regardless of whether they have special needs, says David Yasutake, chair of special education at Northeastern Illinois University.
"Everyone agrees that children learn through play," says Betsey White, a Chicago therapist who works with special needs kids.
But between the demands of therapy, school and life, "sometimes people forget it’s just as important for kids with special needs to play as it is for any other child."
And sometimes even if they know play is crucial, getting the right toys is difficult and expensive. The key is to make sure the toys are modified in a way that allows children to play with them despite physical limitations.
To keep Steve playing, Briseno takes him once a month to the National Lekotek Center on Armitage Avenue in Chicago to play with special toys under the tutelage of the facility’s "leaders," child development specialists who have studied how to help kids with special needs play with toys.
A toy library
Lekotek, which means "play library" in Swedish, is a Chicago-based nonprofit that combines toy experts, families and specially modified toys in play therapy sessions that help children with special needs. There are 22 Lekotek sites in Illinois—16 of them in the Chicago area—and 14 others in the country (see the list on page 61, or visit www.lekotek.org).
The only organization to offer toy lending, Lekotek was founded in the 1970s by two teachers who, at a conference, learned Scandinavian methods for playing with special needs children and then brought the ideas back to Evanston.
Fees vary by center. At the Evanston center, for example, the cost is $125 a year and is not covered by insurance, although all of the centers offer a sliding fee scale based on their clients’ ability to pay.
Lekotek works with children with a host of different disabilities—from autism to developmental delays to Down syndrome. No doctor referral is needed. Some area centers are taking new clients, although the two biggest, in Chicago and Evanston, have waiting lists.
In addition to offering monthly therapy visits, Lekotek operates a toy lending library that allows families to check out toys for a month. Some centers also offer play groups and field trips.
On one visit to Lekotek, Steve’s arms and hands are too stiff to hold a toy, so Lekotek leader Elva Salinas breaks out the shaving cream. While she slathers one of Steve’s hands and arms, Briseno works on the other. Steve’s big brown eyes widen and his mouth relaxes into an open smile as they massage the fluffy white stuff into his muscles. Steve eventually relaxes enough to clutch the little toy car Salinas sneaks into his hand. It’s a big accomplishment for him.
Making special toys
Many of the toys Salinas gives Steve are perfect for kids with physical limitations. There is no winding required for the motorized stuffed rooster—a special attachment requires only that Steve touch a big round button to make it crow. Likewise, a jack-in-the-box has been rigged with a wooden dowel so the puppet pops out with one flick instead of several winds. An automated toy lights up and plays music to slight movements in the air above it. Many of these switches can be found at stores, White says, so mechanically-inclined parents can modify toys they already have at home.
"You’re taking an item and making the steps more simple," says Diana Nielander, executive director of the National Lekotek Center in Chicago.
Maria Lino has been bringing her daughter, Brenda Rivera, to Lekotek monthly since the girl was born 13 years ago with Down syndrome. After each visit, Lino leaves with five or six borrowed toys for Brenda to use at home. One of the first "toys" she took out on loan was a red chair that helped Brenda sit up straight. Later, she moved on to balls and other toys. Now that Brenda is 13, she’s taking home computer games.
"A lot of people don’t have the money to buy the toys; a lot are expensive toys," Lino says. "When you have more than one child you can’t be buying expensive toys for each one of them."
Using the modified toys at Lekotek or at home is more than a way to help the children play. It’s also a way to practice the skills the children have learned in physical therapy sessions.
Before Steve comes in for a play session, Salinas decides which toys will fit Steve’s needs by consulting his parents, therapists and teachers. She looks for toys that he can successfully activate or use to stretch toward a physical therapy goal.
"[Play] is also a motivator," says Ellen Metrick, a toy specialist at Lekotek.
Lino says her Lekotek leader is more than a toy helper—she can be a willing ear or a resource for good advice.
"They’re more comfortable and more relaxed," Lino says about the staff at Lekotek. In Brenda’s other therapies, it’s "30 or 45 minutes—that’s what you’re paying for and you’re out the door."
Lino also appreciates that her two sons, Cristian, 11, and Adrian, 8, can participate in Brenda’s therapy at Lekotek. "Lekotek, for me, [is] a family thing," she says. "All three of them [are] able to go."
Working with entire families is an important part of the Lekotek toy therapy. Siblings without disabilities and parents can participate in field trips and play groups.
"Children need play partners just for social interaction and for fun," says Metrick.
Beth Ryan, a toy therapist at the Lekotek center at Children’s Memorial Hospital in Chicago, brings toys to kids who are in the hospital with terminal illnesses. Because Ryan often works with children who are seriously ill, she sometimes will use the whole session to get the child to hit a switch.
But it’s worth it, she says: "Play is a child’s language. It seems so basic, but when it happens it’s so cool."
Here are some tips for play when children have special needs:
• Ask the family for guidance. Parents know what their children like, what they can do, and what aversions to sounds or textures they have, says Betsey White, a Chicago therapist. So start by asking them how best to play with the children.
• Do not discount the children. "Lots of times they can understand a lot more than what they’re able to give out," says Ellen Metrick, a Lekotek toy specialist.
• Start with their abilities. For example, a blind child may not be able to see, but he or she can hear. So choose toys that make noise, says David Yasutake of Northeastern Illinois University.
• Look for toys that stimulate many senses. Bright lights, interesting sounds and textures work well, White says. "Ideally, you try to stimulate as many systems as you can at one time."
• Follow the children’s lead. Identify a child’s likes and go with them, White says. If a child with a physical disability wants to play catch, try a mitt with Velcro.
• Help if necessary. If you have a child who loves cars but has physical limitations, find a way to let him play with minimal effort. For example, build a block tower so he can crash into it and knock it down.
Diana Oleszczuk is a student at Northwestern University’s Medill School of Journalism and a former Chicago Parent intern.