Monday, April 04, 2011

Books on Cerebral Palsy that I love

After suggesting books piecemeal to some friends, I realized I should put out a list so everyone can benefit, not just people I know! So, here's a list of books on cerebral palsy that I recommend*:

The Brain that Changes Itself
by Norman Doidge

Every parent of a brain-injured child should read this book — no, scratch that: Anyone with a brain should read this book. It gives uplifting stories about scientists willing to reexamine the mechanical view of the human body and the patients they help to overcome the odds. 
The most important lesson to take from this book is that the human brain is always plastic. It doesn't matter if you're 8 or 80, you can still learn new things and that is because the human brain doesn't stop developing — ever
I think often of the story of a boy with CP who didn't receive intensive therapy until age 4 who went on to help his Little League team become All-Stars.


Teaching Motor Skills to Children with Cerebral Palsy
by Sieglinde Martin

When I got this book I said: "Oh! That's why he moves like that," and: "Oh! That's why rolling over is so important." This book tells you what PTs should or would if they had the time and the eloquence to do so. 
The frank truth is that physical therapy once a week is not enough — it has to be incorporated into your everyday life in how you touch and move your child. This book helps you do that and gives you the knowledge to push your therapists for more!
One more wonderful aspect is that it gives a "Roadmap to Independence," including pictures showing children in the various stages that are necessary for developing the skills for walking.


Uncommon Voyage
by Laura Shapiro Kramer

This book was very healing for me in that it was the first account I read of a mother of a child with CP and helped me feel that I wasn't alone. There are so many similarities between Malachi and her son that I have a hard time not expecting Malachi to be exactly the same way when he grows up!
This book also talks a lot about alternative therapies (such as Feldenkrais/ABM, Flexys, homeopathy and Cranial Osteopathy) so it's great for people who are looking for more than what the medical establishment has to offer.
More than any other account I've read since, Kramer was able to give detailed information on how her son moved as he progressed through his development — another fascinating aspect of this book.


You Will Dream New Dreams
by parents of children with special needs

To be honest, I haven't finished reading this book, but I already feel like it should be offered to every parent who discovers their child will have a disability. (Are you listening March of Dimes?) I really wonder how much easier my initial acceptance process would have been if I'd had it.
I often think of Gov. Dick Thornburgh's opening piece in which he says of his brain-injured son that he is proud to show off what he has accomplished instead of ashamed of his deficiencies.



Someone Special, Just Like You
by Tricia Brown and Fran Ortiz

This is a great book that I wish every preschool/elementary school class would read. It has beautiful pictures of children with disabilities doing every day things and the text helps children see what they have in common instead of how they are different. I get choked up every time I read it to my boys.



Children with Cerebral Palsy
by Elaine Gerais

I got this book free from my local chapter of United Cerebral Palsy, so check before you buy to make sure yours doesn't offer it. 
WARNING: Do not read this book from cover to cover! It will make you depressed because the first several chapters are lists of all the horrible things that your child might face as part of this disorder — and for some reason even the relatively benign ones feel much scarier when associated with the label ("omg, you mean he could be constipated??")
But, it is a useful resource to look up terms medical people don't properly explain and it has a few nice chapters on what you can expect home and family life to be like.


*Clicking on the links here will send you to Amazon.com and I will get a small portion of your purchase price. However, I was not asked to review these books and simply offer them as information that has been useful to me.

9 comments:

  1. So true about, "Children with Cerebral Palsy." Connor was diagnosed with CP the day we found out I was pregnant w/Molly. THE DAY! Fast forward to getting my book from UCP and reading the chapter about having more children. I burst into tears when I read that some families decide not to have more kids so they can give their child with CP more attention. Depressing, but helpful that to book covers all the many, many possibilities.

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  2. Glad you agree, Kathy. I worry about some parents who read only that book and then get terrified. I wish it were arranged differently so that the list of horrible symptoms weren't at the beginning.

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  3. thanks for sharing these, shasta. i plan on reading 2 of them when i'm back to reading things for myself.

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  4. That would be great! I really recommend getting "Someone Special" for Addy, I think she'd really like it!

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  5. So glad you are reading "You Will Dream New Dreams" - loved, loved this book. I will be checking out some of your recommendations!

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  6. I have the Teaching Motor Skills book as well, and I agree, it is good at explaining why it's important to do certain things. Therapists don't always tell you, and I need to know *why* I'm supposed to be doing something. It did, however, make me frustrated in the chapter on how to help build neck strength, all of the ways it said to carry your child were ways that I had been (and still do) carry Julia. Dang, that's not working!

    I also have "Yoga for the Special Child" by Sonia Sotomayor (I think that's her last name) and Finnie's Guide to Cerebral Palsy, which our OT recommended. It's quite comprehensive, but understandable.

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  7. Ha, I bet you didn't know our Supreme Court Justice dabbled in therapy for special needs kids, did you? It's Sonia SUMAR.

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  8. Can I borrow a book at a time? I'd love to read up on this. We can talk about it the next time I see you. <3

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  9. Anonymous5:06 PM

    Stumbled on your blog and Really enjoy your writing. My daughter is undiagnosed at 3 years old. I really enjoyed blue sky July.... I forgot the name of the author

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