Re: Book Recommendations for families of young mod.affected mito kids

[Guest guest]

That's an interesting correlation. Collin has atrophy of the cerebellum, both sides, but doesn't have any trouble from it. They think that it's possibly that since it affects both sides, he doesn't seem to notice. Another good book it the Out of Sync Child, it has been highly recommended to me but I haven't had an opportunity to read it. Take care, JoniEmbroidery Journal wrote:

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)

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