Parent to Parent Support
My Child Has a Rare Disability.
Is There a Program in Every State?
Sandra and Bruce's Story
Sandra and Bruce had been married five years when their son Peter was born. He was a simply beautiful baby and changed their lives forever.
It took awhile for Sandra and Bruce to realize that Peter wasn't developing at the same rate as other children. He talked and played, but he didn't walk until he was almost two years old. He fell a lot, even when he was four and then five. When Peter was six, Sandra and Bruce took him to a specialist to see what was causing the problem. That was when they learned that Peter has muscular dystrophy.
The news came as a tremendous shock. They started reading everything they could get their hands on about muscular dystrophy. The information helped them address Peter's needs, but they felt terribly alone and unsure of themselves. They didn't know if they were really doing the right things for Peter. There wasn't enough time in any one doctor's appointment to get all their questions answered'or even asked!
A nurse told them about a program called Parent to Parent. She said that Parent to Parent could put them in touch with other parents like themselves, people who had a child with muscular dystrophy. Sandra and Bruce called Parent to Parent that week. Two days later they were put in touch with a nearby mom and dad. This couple, Joan and Richard, had a teenager named Sam with muscular dystrophy. And the conversations'and an unexpected friendship'began!
What's Parent to Parent?
Parent to Parent is a program that provides information and one-to-one emotional support to parents of children who have special needs. The program operates very simply. Trained and experienced parents are carefully matched in one-to-one relationships with parents who are new to the program. The matches are based upon similarities in disability and family issues. That's what happened in Sandra and Bruce's case. They were put in touch with Joan and Richard, who had an older child with the same disability. Joan and Richard have "been there," as the saying goes. And because of their experience, they have a lot of wisdom and caring to share.
Parent to Parent matches are usually made very quickly, often within 24 hours of the referral. At the time of the match, parents contacting the program may have just learned that their child has a disability. Or the parents may be dealing with a new stage in their child's life.
What Happens After Parents Are Matched Up?
Once parent matches are made, each relationship develops on its own. A lot depends on what the parents seeking support need and want. Some parents are just looking for information'information about resources in the community, for example, or more in-depth information about the disability. These matches are usually short term. The parents get the information they need and use it to improve their daily life or address whatever concerns they have.
Reprinted with the permission of the National Dissemination Center.
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