books about cerebral palsy
December 16, 2014 10:35 AM   Subscribe

I'm looking for recommendations of books and resources on cerebral palsy.

We found out yesterday that our twins are showing early signs of cerebral palsy. It's not a diagnosis yet and might not turn out to be one, but I don't know much about it and I'd like to learn more. I saw this post and will be checking out those blogs, but I'm also looking for book recommendations. Books about therapy, parenting kids who have cerebral palsy, or memoirs of people who are living with it would all be great.

I know I'm always asking you guys for book recommendations, but ...... well, you're good at them. Thank you very much!
posted by gerstle to Health & Fitness (11 answers total) 3 users marked this as a favorite
 
I love this blog:

Love That Max
posted by missjenny at 11:41 AM on December 16, 2014


Just realized that Love That Max was one of the blogs mentioned in the post you linked. I do also love this blog, which is actually written by a young woman with CP:

Stand Tall Through Everything
posted by missjenny at 11:45 AM on December 16, 2014


I don't have any recommendations other than the livejournal site I mention in the linked thread, but I have CP and if you have any questions feel free to memail me!
posted by aclevername at 12:05 PM on December 16, 2014


Symptoms and side effects of cerebral palsy vary widely - really, really widely. A doctor who observed my son in his earliest days told me his prognosis may be 'as simple as not being able to play the piano very well'. Our reality is far more severe, but points to that guy for trying, I guess.

Anyway, I've never found a printed or online resource that has helped me with the medical, financial or practical aspects of eleven years of parenting a CP kid, but I can recommend What I Would Tell You, written by a mother whose daughter's diagnosis is CP, as a glimpse into what it's like to have a special needs kid. I should disclose that I host this website and I know the author through our connections to the medical community locally, so maybe I'm biased, but the piece resonated with me when I first read it, and it seems to have been well received by many others as well.
posted by danwalker at 12:46 PM on December 16, 2014 [1 favorite]


If you've already seen the previous thread, what I said there still stands. (It was a weird out-of-body experience reading that comment with no memory of having written it.)

I'm happy to share my experiences in the US / Australia in case that's relevant to you.

It's a long road - one step at a time.
posted by RedOrGreen at 1:17 PM on December 16, 2014


Oh, to go with danwalker's link to What I Would Tell You, here's another recent piece, You Will Find Happiness Again.
posted by RedOrGreen at 1:19 PM on December 16, 2014


This blogger (Mrs. Tiger on Hellobee) writes about her experiences parenting a preemie with possible CP and short gut syndrome. Her son is maybe 18 months old now so it's not a long-term perspective but perhaps her experiences with medical appointments, Early Intervention and occupational therapy might be interesting to you.
posted by k96sc01 at 5:31 PM on December 16, 2014


For a moving account of raising a CP child in a different period of time (the 1950's and 60's, IIRC), Karen (by Marie Killilea) is a great read, and very inspirational. Of course there are tons more resources for CP kids and their parents today than in Karen's infancy and childhood but some of the info and descriptions are timeless.
posted by RRgal at 8:00 PM on December 16, 2014


Not 100% what you're looking for but someone has to mention Skallagrigg.
posted by wrm at 11:50 PM on December 16, 2014 [1 favorite]


At least one of the kids talked about in My Baby Rides the Short Bus has CP.
posted by The corpse in the library at 2:32 PM on December 17, 2014


Thank you so much, everyone!
posted by gerstle at 6:44 AM on December 18, 2014


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