Book Recommendations for families of young mod.affected mito kids

March 30, 2005

I just finished reading a book – that was especially

helpful and interesting. I wish however , I would have read it a year ago!! It

is called Children with Cerebral Palsy- A Parents Guide ( Second Edition) Edited

by Elaine Geralis. I picked it up at the library, it was published in the late

90’s.

I was interested because of the similarities between our

kids and those that suffer from CP. In my daughters case, she has hypoplasia of

the cerebellum , is ataxic and has low tone. Similar issues of CP kids. Also,

because CP often includes Mental Retardation, Feeding Issues, Vision and

Hearing Problems there are many similarities.

The book talks about your life with your child- as a whole.

Broken down by chapters they talk about the different types of CP- and detail

the working union of the brain with movement and muscles- this applys to many

of us. Then it goes on to daily life, adaptive equipment, managing your child

at home, with family and school. Lots about all of the different types of

therapists you see, specialists, doctors etc… plus information on

education, integration and teaching your child.

I have read a lot of books relating to special needs

children, neuromuscular disease, SI Disorders etc.. but this one although

written very simply- comes the closest to describing our life /needs etc. Now

if only I had read it a year ago when I was trying to figure a lot of this out.

Anyway, check your local library or e-bay, amazon used etc.

I think it would be very helpful. It is detailed and most of the content applys

to children with brain/gross motor involvement, but also covers feeding issues,

Medical conditions associated with CP- ( every one in the book I have seen

discussed here as the muscle involvement issues are so similar) mental

retardation, SI disorders , learning disabilities etc…

My daughter Zoe is almost 3. She uses a reverse walker (

they actually have a pic of hers in this book!) we are trying to teach her to

use forearm crutches), Her cerebellum is moderately underdeveloped which causes

ataxia and extreme balance reactions, she has malformations in her left frontal

lobe, myelin damage ( at risk for seizures-so far so good!), Zoe knows 100

words in ASL and can verbalize about 25 with beginning sounds, she tremors when

tired, is diagnosed as MR- ( I don’t believe this one yet!! Time will

tell) .. anyway I just wanted to give you the idea of why this book worked for

me!

Have a nice day everyone!!

Suzanne man, mom to Zoe ,( almost 3)

AZ UMDF

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