Thursday, January 13, 2011
Calling all Cerebral Palsy Moms!
By Ellen Stumbo
Nina has been with us for a year. She is just tight tight tight. Although she did make progress after arriving home, she is not doing any better. Actually, we feel like she is regressing once again. And this is my frustration, I cannot find what motivates her! She has little to no desire to ever walk or be independent. When I tell her we are going to stretch she says no, when I tell her we do this so that someday she can walk, she tells me it is okay, she just wants a wheelchair. Anything having to do with her mobility is a fight and she has no motivation or desire to do this! Is it a result of her CP? Is it a result of being institutionalized for almost 4 years and an emotional thing? Well, we don't know!
So I am going to the experts on Cerebral Palsy. No, not the doctors. Yes, they are experts on the medical field, but, they are not the ones raising and doing life with the kids they serve. Not the ones that actually "get" what it is like to parent our children. They are amazing at what they do, but their help can be limited unless they too have walked this road.
I am calling all mom with kids with Cerebral palsy. I need your help! Do you have a blog? Let me know so I can learn from your experience. Do you have advice? I am open to all advice. Do you have words of encouragement? I can use them right now!
I am not giving up on Nina, and it breaks my heart to see that she seems to be giving up on herself!
I want to know what has worked for you. From therapy to surgeries, to songs that motivate your child!