Release Date: May 21, 1998
BUFFALO, N.Y. -- Nursery rhymes, rattles, teething rings and games like "Peekaboo" all help babies bond with parents, teaching them how to interact with their family and the rest of the world.
But for babies born with serious developmental disabilities -- and their parents -- the emphasis tends to be clinical, marked by frequent visits with doctors, social-service workers and physical and occupational therapists.
For these babies, play often gets overlooked, according to Susan Mistrett, director of the Let's Play! project, part of the University at Buffalo's Center for Assistive Technology, and educational specialist in the Department of Occupational Therapy.
She and her colleagues at Let's Play! are putting this essential ingredient back into the lives of babies with disabilities -- and their families -- almost from the time they are born.
In operation just three years, the project has been so successful that New York State's Department of Health last month asked the UB staff to replicate Let's Play! in Corning. UB staff also will be working with the United Cerebral Palsy Association to introduce similar programs at several sites across the state. Organizations in Kentucky and Virginia have contacted the project to find out how to pattern their own programs after the one at UB.
Let's Play! has been a success, with more than 50 families in Erie County alone and more than 100 additional families through satellite sites in nearby Niagara, Wyoming, Genesee and Orleans counties.
The federally funded project offers to families free assistive technologies, such as toys modified to make them easier to use, as well as seating or positioning equipment that allows babies with developmental disabilities to better interact with their environments.
At the same time, the project emphasizes "familyhood," the natural integration of the baby into his or her family and home environment.
"Too often, the focus for infants with disabilities is therapy, therapy, therapy," said Amy Goetz, an occupational therapist with Let's Play! "The emphasis gets away from play, but that's how children learn."
Mistrett noted, "The medical issues are critical and they have to be dealt with, but too often, we find, we're missing the kid piece. Yes, the disability is a curve ball, but your child wants to play. Our message to parents is, 'They're kids! Have fun with your baby!'"
That requires more of an effort than it would with a child who doesn't have a disability, Mistrett explained, and that's where Let's Play! helps.
"When babies are small, parents naturally play with or talk to them to communicate and begin the bonding process," she said. "But some children with disabilities may not be responsive. It's difficult for parents to continue if the baby never reacts or frequently cries. We're saying 'keep talking and playing' because even if the baby can't respond much yet, it's critical to his or her development and to the parents' relationship with the baby."
Sometimes parents need help interpreting their child's responses.
One mother of a baby who was blind was very conscientious about talking to the baby, but was disheartened by the fact that whenever she did, the baby would turn her face away from her. She learned from UB staff that the baby was turning her ear toward her mother's voice to listen.
A piece of assistive technology can make a dramatic difference. The mother of one 8-month-old with a severe neurological disability told project staff that the baby cried for hours each day and simply could not be comforted, no matter what was tried. He was in discomfort; the family was at the breaking point.
At Let's Play!, the baby was positioned in a commercially available nip-nap seat that also provides soothing vibrations. Within minutes, the irritable, fretful baby had been calmed sufficiently by the vibrations to take notice of his environment. The mother took home the nip-nap seat and an overhead gym that the staff adapted so that hanging toys were lowered to a level where the baby could reach them. When staff visited the family's home a few weeks later, the mother scarcely could contain her excitement.
"She ran to the door to meet us and said 'Wait 'til you see what he can do!'" recalled Mistrett. "It was like she had just fallen in love with her baby."
Let's Play! provides assistive technologies to babies immediately, without the three-to-six month delay that government programs usually entail to obtain equipment.
"From birth to age 2, children experience the most rapid period of growth of their lives," said Mistrett. "If families have to wait a few months to get a toy, the baby may outgrow it by the time it is received."
Let's Play! has a play center and "lending library" at UB, with more than 650 toys and pieces of equipment selected to fit the needs of children with disabilities.
Families select items during play sessions, which generally take place every four to six weeks in the child's home, ensuring that play occurs in the environment in which the child is most comfortable.
Two staff members attend each home session, exchanging toys and devices that are no longer used for new ones.
Parents also have the option of periodically returning to the center to look for new and more challenging toys as their children reach new milestones.
Initially funded under a $20,000 seed grant from UB and headed by Mistrett and Shelly Lane, formerly UB associate professor of occupational therapy, Let's Play! is supported by a $700,000 grant from the U.S. Department of Education.
UB's Center for Assistive Technology is a multidisciplinary center providing research, development, education and service in assistive technology for people with disabilities.
Additional information on the project and toys for babies and young children with disabilities is available at the Let's Play! Web site at http://cosmos.ot.buffalo.edu/letsplay/