Hello I'm a student researching available help to parents

Here parents of children with Cerebral Palsy can post questions about caring for their child and get advice on special needs and care.

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mattsandersuk
Posts: 1
Joined: Mon Feb 22, 2010 1:51 pm

Hello I'm a student researching available help to parents

Postby mattsandersuk » Wed Apr 07, 2010 5:23 am

Hello, although I am not a parent I was not sure where to post this, please don't hesitate to delete or move it if it is inappropriate.

I am an undergraduate student in the UK and am currently carrying out a piece of coursework looking at how advice is given to parents of children with cerebral palsy. The focus of the work is on communicatory problems that could be faced.

I would just like to ask whether you thought that any leaflets or support materials helped you in understanding cerebral palsy and helped you to communicate with your child. As well as where you obtained these materials from?

Thankyou for your time, any information would be greatly appreciated.

Matthew
Last edited by mattsandersuk on Wed Apr 07, 2010 1:44 pm, edited 1 time in total.

Bennysmom
Posts: 17
Joined: Tue Mar 02, 2010 12:35 pm

Re: Hello, I'm a student in the UK.

Postby Bennysmom » Wed Apr 07, 2010 6:04 am

We purchased 2 books. Cerebral Palsy : A Complete Guide for Caregiving
By Freeman Miller, Steven J. Bachrach
Which is extreamly upfront, and medical terminology at times but we found it helped explain our son without sugar coating it.

and

Children with Cerebral Palsy : A Parents Guide
By Elaine Gerlais
Which was really helpful explaining how we are feeling is normal but I found it did sugar coat Benjamin a bit. I have given that book to a friend but I wouldn't mind reading it again actually now that I know more about my son.

We purchased those ourselves but the second one was offered to us by our physiotherapit but we already had it.

Talking with doctors I found they only gave me small amounts of information at a time to not overwhelm me but I found it was hard since we wanted to understand our son grieve if needed and then accept and learn how to help him.