LIVING WITH SMA: THE JOY OF TOYS!
by Lori Hungate

Playtime is a vital part of children's lives. Toys can help stimulate learning processes and creativity, enhance language development, build friendships as well as teach tactile and motor skills. Plus, toys are just plain fun.

However, children with disabilities such as spinal muscular atrophy (SMA) may be frustrated by certain toys. If a wind-up stuffed animal requires the use of muscle groups or coordination that the child does not possess, play becomes hard work.

By adapting products or selecting items from special catalogs, the joy of toys is returned to the child. For example, battery- operated toys can be modified with large easy-to-use buttons or switches, small toys are more easily handled when Velcro strips are attached and ride-in vehicles can have seat belts installed for extra support.


TOY GUIDE

Many parents find that some "mainstream" toys are suitable for children with disabilities, with little or no modification needed. But it takes time to evaluate the hundreds of products on the shelves. It can also be a disappointment for parents to walk into a store to find toys that can't be used by their children.

Finding appropriate toys for a child is made easier by a catalog developed by Toys "R" Us. The catalog, Toy Guide for Differently-Abled Kids, was put together last year with help from the National Parent Network on Disabilities, Lekotek (a national, non-profit organization that provides families with guidance in good play behaviors), occupational therapists and toy research and consulting firms.

The Toy Guide was assembled after evaluations were made by independent researchers. In a 10-month project, groups of children representing more than 90 disabilities were gathered into play groups. Each toy was scored statistically according to how challenging, fun and educational it was.

Toys "R" Us product manager Jeanne McIntosh says the objective was to rate toys right off the shelf and score them according to the benefits to the child. "When the toys were evaluated," McIntosh says, "we wanted to know that the children were able to operate them, but it was also important to know that they enjoyed playing with them."

When Toys "R" Us first began making plans to provide a service for children with disabilities, McIntosh reports that Lekotek consultants advised the company against making a special disability section in the store. Instead, a mainstream approach was suggested and a plan for a toy catalog was outlined. After much collaboration, the first guide came out in 1994.

Now, after scanning the catalog with their parents, children with disabilities can go to the toy shelves and find a treasure just like their friends and siblings can.

The company has received more than 1,000 letters of positive feedback about the catalog from parents nationwide and the project is continuing. In fact, about 70 toys are evaluated by Lekotek every eight weeks or so to provide information for future Toy Guides.

"This is not just a token gesture on the part of Toys "R" Us," says Diana Nelander, planning and information officer for Lekotek. "They are truly committed to providing a resource for parents showing what a child can do, not what they can't do."

Toys "R" Us officials were pleased with the success of the original Toy Guide. "We're happy to report that the new catalog describes 117 toys, with some opening remarks from 1995 Miss America, Heather Whitestone," McIntosh says.

The free catalog is available in all Toys "R" Us stores or through the National Parent Network on Disabilities by calling (703) 684-6763.


DR. KANOR'S TOYS

Since 1974, Dr. Stephen Kanor has played the role of Santa's helper, not only at Christmas time, but all year long. He enables children with all types of disabilities to have fun with toys.

Kanor, a biomedical engineer, and a small staff design or adapt toys which are sold by his company, Toys for Special Children. These items are available through his 48-page catalog.

For children with severe disabilities, Kanor can adapt a toy in minutes by attaching it to any of the more than 50 switches he has developed. Kids can activate toys by puffing on a straw, lightly touching a plate switch, making a loud noise or by other methods suited to their abilities.

Kanor believes that the main purpose of toys is play, not therapy. "There is some growth that goes along with the play," Kanor says. "The switch that makes Miss Piggy sing today will help someone drive a power wheelchair or computer tomorrow."

Grownups with disabilities are also served by Toys for Special Children. If a switch, tool or adapted item is needed but can't be found in his catalog, Kanor and his staff enjoy doing custom work to make independent living possible for anyone who asks.

Kanor's warehouse and shop, filled with goodies, resembles the real North Pole workshop, but is located closer to home at Hastings-on-Hudson, N.Y. A free catalog is available by calling (800) 832-8697. It's filled with specially adapted toys and switches developed by Kanor and his staff.


TOY LIBRARIES

A great way for children with disabilities and their parents to try out adapted toys and get advice on play therapy is to visit a toy library. Here is information about two of them.

Alliance for Technology Access, a national non-profit information-sharing program, emphasizes assistive technology and is a clearinghouse for computers and adaptive devices. Most locations include a toy library. The headquarters is in San Rafael, Calif., and you can call (415) 455-4575 to find out if a technology center is located in your area. The center can then advise if a toy library is available. It's recommended that you make an appointment.

Lekotek is a national network of non-profit centers providing play programs, toy-lending libraries, and training and support services to families of children with disabilities. Call (800) 366-PLAY to see if a toy library is in your area or to gain access to the Lekotek Toy Resource Help Line. The help line lets parents of children with disabilities explain the skills of their child and get recommendations about suitable toys.

Both organizations provide free toy libraries. At some locations, Lekotek provides Compuplay centers (computer play classes) with software libraries. Alliance for Technology Access also includes early learning computer labs at some of its centers.


MORE INFORMATION

Book: The Best Toys, Books & Videos for Kids, by Joanne and Stephanie Oppenheim. Paperback. $12 plus shipping. Harper Collins Publishers Inc., 10 East 53rd St., New York, NY 10022. Includes more than 100 suggestions on how to adapt ordinary toys for children with special needs.

Newsletter: The Oppenheim Toy Portfolio, a quarterly publication that includes learning activity ideas and ways to adapt ordinary products for children with special needs. Send $12 to 40 East 9th, Suite 14m, New York, NY 10003.

More toy and adaptive devices catalogs: JESANA Ltd. (800) 443- 4728; Able Net Inc. (800) 322-0956.

ABLEDATA: The National Rehabilitation Information Center provides a free service through ABLEDATA, a database filled with listings of assistive devices from national and international sources. If you are interested in a specific toy or would like the names of manufacturers that provide recreational items, call (800) 346-2742.