News
Are you being heard? by Rosalind Spence
12/02/2010 08:43:00
Coping with a child with a disability
I DON'T know what it is like to parent a child who has a disability because none of my children have a disability, but I try to empathise with parents.
I recently read a booklet in which families with disabled children
shared their stories. It was very moving and inspirational, I would
recommend it. This booklet called 'Our Family, Our Future' was
published by 'Contact a Family', an organisation which supports
families with disabled children, to celebrate their 30th anniversary.
So many of the families in the book and families I work with speak of
the constant battle to get the support they need and the bureaucracy
they have to endure to get what they need or want.
The parents of three-year-old Grace, who has Cerebral Palsy, waited
eight months from her assessment until the first piece of equipment
arrived.
The mum of five-year-old Gary says "… you wait six months for an
assessment, then it's another six months until you get the (wheel)
chair … sometimes all I do is sit and cry …"
Eight-year-old Carter gets around in a powered wheelchair and wears a
spinal jacket due to profound muscle weakness. His mum likes to focus
on the things Carter can do. He joined the school chess club; he
recently joined the choir and is due to perform at the O2 arena.
Rebecca's mum says: "It feels like someone pressed the button on a
roller coaster and forgot to stop it. Many people lack compassion and
over the years some people's attitudes have made my life hell."
Check out the report 'Our Family, Our Future' at www.cafamily.org.uk.
If your family life includes a child who has a disability, help is at
hand. 'Contact a Family' offers support to families who face
bureaucracy and prejudice. They can also rejoice with you in
celebrating your child's latest achievement. They understand. Getting
in touch with 'Contact a Family' is easy as they have a local
representative. She is Trudy Marwick and she can be contacted at
trudy.marwick@cafamily.org.uk or phone 761835.
Parents can also get help from Advocacy Orkney. We can help you in
getting your views listened to and respected, or support you in
challenging decisions made or actions taken which directly affect you.
Contact us on 01856 870111.