Marilyn K. Mapes, Early Intervention Special
Education
mkmapes@ilstu.edu
Metcalf Laboratory School
Illinois State University
Normal, IL 61790-7000
(309) 438-3038
New parents go to book stores and buy beautiful new books with up-to-date information from experts and they learn what to expect from their baby. They go to the doctor's office for well baby checks and chat with other parents and take silent notes no how their child is doing in comparison to other children playing in the waiting room. They watch television specials that detail child development. They have many resources available to them to reassure them, inform them and help them as they raise their typically developing child.
When parents are told that their child has a rare disability, parents can feel very isolated. What will be typical for a child with this specific disability? When can they expect to observe the developmental milestones that seem to occupy the thoughts and conversations of both family and friends? Who will be able to understand just how they feel?
Working with young children with disabilities and their parents presents unique challenges. Parents may be dealing with a rare syndrome or a collection of unusual symptoms that have not yet been diagnosed. They may be simply wanting to communicate with another human being who is having a somewhat similar experience.
Support Groups and Parent Groups have been the standard responses to address these needs. As a professional who has been somewhat involved with these groups over the years, the strengths and weaknesses of support groups have become apparent. Working with parents themselves to organize and plan these group meetings, sometimes much effort is expended for very few numbers of parents who do not have very much in common. When working with families dealing with rare disorders, it is understandable that parents report wanting to communicate with someone who has a child with the same diagnosis and perhaps is even close in age to their child. Statistically, this might take a parent across the country or even around the world.
The June 1994 issue of "Exceptional Parent" is a special telecommunications issue. Articles from families with children with special needs were featured and the e-mail addresses of these families were included as well. General information about Internet, e-mail, mailing lists and news groups was also included in this issue. My attention was immediately drawn to two of the disorders that were mentioned in the articles. I was currently seeing children with these same disorders. With a new computer and e-mail available in my building, I invited parents to sit in front of the computer screen and correspond with these families.
What a thrill for all of us! One parent remarked that she had not typed since high school. When we received a detailed response from one of the parents, we were delighted. The letter offered information, insights and impressions that came from direct experiences. The following quote from C. S. Lewis seems most applicable.
"Friendship is born at the moment what one person says to another,
'What? You, too? I thought I was the only one."
There will probably always be a place for Support and Parent Groups, and now e-mail has added a new dimension. Parents can communicate around the globe and network with other parents experiencing similar situations. Getting the e-mail address may be as simple as coming across it in a publication such as "Exceptional Parent" or it may mean first contacting the family through NPPSIS (National Parent to Parent Support and Information System), a new national database that functions as a resource for connecting families experiencing rare disorders. For parents of young children with rare disorders, this can be a link to someone who actually does understand, to someone who can sincerely reassure, to someone who can alert to pitfalls, to someone who can give at least one sample of what might be typical for a child with the specific disability. What a wonderful tool for special educators to explore with parents!