I hate to get too personal here but seeing Unky Orson's been about lately I thought I'd ask: I am curious if he's (or any one else here's) aware of any resources, especially for LDS parents, in better understanding and caring for a child with cerebral palsy.
I was under the assumption he had a child with such, but I could be mistaken. I also was under the assumption that child has since passed away. The local support groups tend to favor the moms, and I'm curious to talk to an LDS dad and get his take on things. I don't want to tread on any toes, but I want to glean as much info as I can to prepare for any possibility.
Anyone have any suggestions or leads on where to get more info? Thanks!
Posted by Orson Scott Card (Member # 209) on :
We didn't consult LDS sources. We live in a town with really great facilities and helps for people with CP and their families.
I suspect most of the forums and groups for parents of kids with CP consist of women because the families make the same choice we did. With our two older kids, we shared almost all the parenting duties as equally as possible (apart from anatomically impossible things and the children's own choice; when a crying kid said "I want Mommy" we didn't say "no, it's Daddy's turn now). But Charlie's needs were so intense that we had to specialize more. I still took care of him about as much as I did with the other kids; but that meant, given his needs, that Kristine took care of him about ten times more than I did. So she became the family's expert on Charlie, though I was still very much involved. I simply had to be able to concentrate on writing in large blocks of time, and Charlie's needs broke up the day into very small slivers of time between taking care of him (and the rest of the household). Ultimately, it became too much for Kristine alone, if she was going to do anything else, and our friend Erin Absher became intensely involved in Charlie's life, too; eventually, her husband Phillip also did.
As Geoffrey and Emily got older, they also helped with Charlie, and even Zina, who was very young, also became part of his life, playing with him and talking with him and watching movies with him.
The result was that we formed our own support group - and given that everyone in it is LDS, I suppose it was an LDS support group. But we never thought of it that way. We thought of it as "Charlie's family."
[ March 19, 2005, 08:30 PM: Message edited by: Orson Scott Card ]
Posted by estavares (Member # 7170) on :
Thanks for your insight.
More than anything I'm looking to talk to others in the same situation; and I have questions galore, beyond the physical and occupational and speech and hearing and her G-tube and blah blah, yada, yada, yada. I imagine there are some good books on the subject, but I've been wanting an LDS persepctive.
I can never get a straight answer as to the life expectancy of a child with CP. Part of me is terrified daily this is Miriam's last day (she's almost two years old), and another part trusts she'll stick around as long as it's her time. Being the control freak that I am, I am constantly seeking answers when, in all probablity, there are none.
It's nice to see similiarities in our family dynamic. Thanks again.
Posted by Eaquae Legit (Member # 3063) on :
I lived with a man who has very severe CP once, and he was almost 40, I think. I learned never to be surprised at what people can do, given the opportunity.
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