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A disabled child in a family results in a disabled family. In other words, the whole family is affected. Every family I have met socially or in hospital display an overwhelming love for their child and a desire for them to reach their potential.
However, love is not enough. The world of disability is a tough one with endless forms to fill, phone calls and people to chase and adaptations to be made in every area of family life. This is a tall order for a professionally trained person but for untrained parents the responsibility can be, and is, often overwhelming.
Our son Gareth, who is 8 years old, has spina bifida and hydrocephalus. He has double incontinence and is a wheelchair user. He also has guts and character! Given the opportunities, he has reached way beyond the potential that was given at birth.
Gareth swims 200m unaided, he represented GB gymnastics in the 13th International Gymnaestrada in Austria in 2007, he is learning to play the baritone, sings in his school choir and is a keen wheelchair football and basketball player. Obviously, we are very proud of all these achievements but it does come at a price.
Our family life revolves around Gareth’s needs. His younger brother inevitably does not receive the same freedoms and experiences that his friends have and his life is full of compromises. Gareth goes to a mainstream school and has no friends with similar physical disabilities. He is always trying to fit into the ‘able bodied’ world. As parents, we are exhausted trying to accommodate both boys’ individual needs let alone our own needs as a couple.
This year we heard about CADCAF and joined the gang for trips to Weston, Cattle Country, an art day and my boys’ first ride on a horse. It was a relief to have other parents to talk with and share experiences, both good and bad. The boys relaxed and both gained from enjoying time together to have fun. They also acquired new skills and had to solve problems as a team.
CADCAF is a lifeline for so many of us. There is always a listening ear, support with the ‘forms’ and a chance for the whole family to relax and have fun.
As I said, we are a ‘disabled family’ living in a pressure cooker. Most of the time we can keep the lid on but, when we all too often fail, we are alone to pick up the pieces.CADCAF actively releases the build up of pressure allowing the family to ‘keep the lid’ on. For some families like us, the trips in the long summer holidays made all the difference to our ability to cope; other families need more sustained support.CADCAF releases pressure and provides opportunities for all our children to reach their potential and fun.
Nici Picken 5/11/07
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