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This is a (printer friendly) extract from The Contact a Family website, which is one of the leading information resources for families of disabled children and those who work with them. The full online version of this page can be found at
http://www.cafamily.org.uk/professionals/childrensservices/whatparentstellus.html

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What parents tell us

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By sharing parents’ experiences, we hope professionals working in children’s centre and family information service will get a better understanding of the problems families face and how they might support them. Our parent’s stories are based around the themes of our briefing papers.


Information

A parent talks about struggling for services which vary, depending on your postcode

"My daughter has cerebral palsy and hypermobility, requiring regular support from a physiotherapist. Where we used to live all the different services were attached to my daughter’s child development unit. There was a special needs nursery and a parent support group which had information about services or could help with any problems. The physiotherapist and occupational therapist did joint home visits, sharing decisions in what needed to be done. They said that when my daughter got too big for her buggy they would provide her with a larger buggy designed for older disabled children. Read More...

Around diagnosis

Gail’s reaction on first hearing her son has a rare chromosome disorder and how a call to Contact a Family helped

"At the age of 15 months old my son Guy was diagnosed as having a rare chromosome disorder called Angelman syndrome. The hospital consultant told us that this meant our son would have severe to profound learning disabilities, would never talk, may not walk, and would never be capable of leading an independent life. Read More...

Chrissie talks about her feelings on hearing her son’s diagnosis.

"When Ernie was born I was naturally over the moon, a healthy, beautiful baby boy. I couldn’t be happier and life just couldn’t be better. When Ernie, (pictured above), had his eight-week hearing test, the results were difficult to read due to him having a bad cold. He was referred for a further test. The unforgettable day came on 18th August 2006 at 9.30 am. I found out Ernie was profoundly deaf in both ears. He was then twelve weeks old. It was not what I expected to learn. Read More...

Childcare/Education

Gail talks about her experiences of making mainstream nurseries inclusive

"When initially approached, most nurseries said they could accommodate a disabled child. They were less welcoming when they heard what Luke’s needs were. There were concerns over space, safety and lack of staff with sufficient special needs experience. This left me feeling frustrated and excluded but I should not have been surprised. Read More...

If you are a parent of a disabled child and would like to share your story please contact us.

 


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