Parents share their experience of special children

Press, 2 July 1985, Page 16

Parents share their experience of special children

By

MAVIS AIREY

“They didn’t tell me till he was two. They kept saying he was all right but they must have known — I could see something was wrong.” “One of our children isn’t very good with him at all. She’s at that age where she feels that having a handicapped brother is a sort of stigma.” “You learn that you have one or two good friends that you can rely on and you learn to cry your tears into the kitchen sink where noone sees them — and then to get on with life.” In “Special in a Different Way,” parents of disabled children share their experiences with remarkable frankness. The booklet is the result of an unusual project spanning three and one half years undertaken by the New Zealand Playcentre Federation as their contribution to the International Year of Disabled Persons. “Most books concentrate on the child’s handicap, so we thought a pamphlet on what parents feel and how they cope would be appropriate,” explains Playcentre worker, Pat Penrose. She sent out questionnaires all over the country, using the network of 700 playcentres, which many children with special needs attend. Pat is full of admiration for the bravery of those parents who were able to write such painful experi-

ences down and share them with a stranger. “Each letter indicated a struggle of some sort. Having to accept a handicap or disability. Knowing there was something wrong and getting nowhere. Going from one professional to another till the right one was found. Finding out how to deal with the problem. “Then there was the question of how family members accepted it. And where to get support. “Some had happy endings, but many did not.” Pat’s years of experience working with children with special needs had prepared her for the sort of frustrations the parents faced. But she still found receiving the responses a painful experience. “I shed many a tear as they arrived. I felt for them. A tragedy of our own was still relatively fresh and I learnt to put those letters aside to read when I wasn’t just arriving home tired." She thinks that taking part in the survey has been of therapeutic value to many parents. “It forced feelings to the surface, gave them someone to tell things to. I think it offered people a good support system in allowing them to work through their feelings. “The more you have to talk about it, the more you understand your own feelings.” The survey results were

given to a journalist, Julia Stuart, herself the mother of a disabled child, to collate. Pat Penrose hopes that the experiences and practical information in the booklet will help other parents of disabled children to cope more easily with their problems, and learn their way around the system of professional care and services. “For children with obvious disabilities, help is relatively easy to find. This is aimed more at parents whose child’s disability is less easy to diagnose. The support these parents need is something that is not always thought of. “The professionals can

sometimes tell you what’s wrong with the child, but not what to do with the child. To find the help that’s right for you may mean 1 visiting several organisations.” The specialist services ought to be able to come ' together more instead of the ’ mother having to tell the < same story to a string of I different people, she main- ’ tains. < In spite of the frustra- > tions, parents luve to persevere, she says. ’ “There is probably some I merit in having to fight ] your way through the system rather than having a 1 nice, neat list of where to

go for help. "You must find out what isn’t helpful to you, otherwise you might always wonder, ‘ls there something else I should have tried?” Pat would like to see “Special in a Different Way” widely used by field workers, therapists and disability societies, and thinks anybody associated with families with “special” children will find it valuable. “Friends are often not very sympathetic because they don’t understand the parents’ needs,” she says. “There are all sorts of ways of offering support. Parents need the opportun-

ity to talk it over time and time again, so just listening without offering advice is helpful. “If you can say, ‘I don’t know what to do, but I’m here,” it’s better than not visiting them or phoning them at all. And if the disability is not too severe, taking away the disabled child can give the parent a welcome break, or a chance to devote time to their well brother or sister,” says Pat Penrose. “Special in a Different Way” is available at $1 for a single copy, 75c for two or more copies, from the Canterbury Playcentre Association, Box 8083, Riccarton.