Questions about cerebral palsy
I have been working on a post about my cerebral palsy. I haven't written so much about that topic because I had originally intended my blog to be about my interviews with people with disabilities and the societal issues of disability.
But, after reading Kathryn's recent post, and Billie's blog and Jacqui's blog and others, I think that maybe some information about how CP is for me could be helpful.
So, parents of young children with cerebral palsy, do you have a question you'd like me (or maybe my mom) to address about my CP now or when I was younger? If so, leave a comment here.
8 comments:
Same old questions about tone - have you had botox before? Does it hurt wearing AFO's for an extended period of time? Is it better to keep on trying to get Moo to walk even though it is incredibly unlikely that he will be able to or should I concentrate on the powerchair and teaching him how to drive? Do you even like therapy? Does physio help? Have you had any surgeries (like hamstring lengthening)? Did it help?
haha - sorry David, I should stop now or I could go on all day.
I would love to hear your thoughts on physical therapy, occupational therapy, etc. What worked for you, what didn't? What do you think your parents did well, and what might they have done differently to help you progress? What are your thoughts about inclusion? Did you have special education services that truly helped? Like Jacqui, I could go on and on! Thank you for being so willing to share. I think your blog is a great resource, and I hope Eden will read it some day when she is grown and find it helpful and inspirational:)
Thanks, Jacqui and Billie. I just finished my post. I hope it is helpful.
Hi David --
My husband and I adopted a 2 year old boy from Vietnam. We have 2 adult bio-kids and another adopted daughter, age 4, born in China. Our Vietnamese son,Michael, is currently being treated by a physical therapist, occupational therapists and we are in process of getting a speech therapy evaluation. There has not been a diagnosis of CP at this point, but I see a lot of indicators. My greatest fear is that since my husband and I are in our 50's, will he require full time care on our part indefinitely? I don't want our older children to feel like they need to take over when we are gone -- adopting was our commitment, not theirs. When we began the adoption process in Vietnam we said we wanted to adopt a healthy toddler boy -- this has been a surprising adjustment and I don't know what I need to prepare for. Since I am not very computer saavy, you can reach me via e-mail at kmdickins@aol.com
Thank You!
Kim
Hey David, good to see us guys with CP sticking together and blogging...used to be hard to find info on CP. If you ever want to see a different perspective, check out my blog at cpoutlook.blogspot.com
If you watch my back, I'll eatch yours and place a link on my site for you if that's ok with you. You can email me at marshallaroberts@hotmail.com , just reference David from blogspot
Hey David...and anyone else out there wanted to let you know my blog is now at http://hubpages.com/hub/marshallscp. Sorry for any confusion.
Marshall
Update to correct above info..this is Marshall and I had to move my blog. Its now at marshallscp.com/blog/ and I now have a website as well at marshallscp.com
Thanks and hope to see your comments on my blog!
Marshall
David, you are doing a wonderful job. I can't tell how much your site has helped me and inspired me. God bless you. My 7month premie is having spastic cp and not yet diagnosed as quad but all her limbs are effected. She smiles a lot, sings in her baby language but her body tone is very bad and she cannot stay still in a single position for long. I don't know about her future, but we are trying to help her as much as possible. She doesn't use her hands to hold objects and has extensor neck tone. Most of time she is irritable and scard of new things. Doc says, her vision is also not yet very good and as she is premie her corrected age is 4 1/2 months.
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