It is like Nina is in a boxing match against her CP. She swings her little arms hoping to punch her CP, but sometimes CP comes at her with a fierce vengeance that knocks her down.
Nina started walking with no braces, just her bare feet. This is really great progress, it means she is getting stronger and balancing better. Without her braces her left foot pops up and she walks on her toes, but she is walking, and that is always good! Actually, it is great!
The puzzling part is when she does great and the next day she just cannot do it. She gives up, she believes it is too hard, even if she has done it 10 times before. So, in an effort to try to encourage her, this is an example of a conversation we might have:
Me: Who is in charge of your body? Cerebral Palsy, or Nina?Nina: I don't know.
Me: Can Cerebral Palsy walk?
Nina: No
Me: Can Nina walk?
Nina: Yes!
Me: So who wins, Cerebral Palsy or Nina?
Nina: Me! I can walk!
Me: Yes! And Cerebral Palsy cannot stop you from walking! It tries to stop you, but it can't! We are beating Cerebral palsy, we are winning! We are showing it who is the boss of you!
Nina: I am the boss of me!
Me: So every time Cerebral Palsy wants to stop you from doing something, you need to show it who the boss is!
I am not sure how this approach will work, but the more we can get her to take ownership of her abilities, the better and better she will do. We don't want CP to be something she sees as her "enemy" but we also do not want her to be beaten by her disability. She can do anything she sets her mind to, and slowly, we are making progress. So the last few days as Nina has been taking independent steps without her leg braces, it is encouraging to see that. Slowly, slowly, she is showing Cerebral Palsy who is the boss of her body!
I would love to hear from young adults and adults with Cerebral palsy. is this an okay approach? I do not want her to be resentful of her CP, but I want her to take ownership of her abilities. What would you advice?
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Interesting approach! I have no idea if it's good or bad, but it seems to be motivating, so that seems good!
ReplyDeleteYou're such a thoughtful mama!
I, too, have no experience. But I think it's wonderful to get her involved and aware of CP. GO MAMA! I also think it's great you are connecting mom's who deal with CP. :)
ReplyDeleteI would come up with something else. There will be days when she just can't do something as well as she did the day before, no matter how hard she tries. Sometimes trying again tomorrow is the best plan of action. You don't want her to feel defeated or that she's "lost" by making it seem like a fight.
ReplyDeleteEllen,
ReplyDeleteHailey is nowhere near Nina in the walking department,but when you mentioned that "Nina's left foot pops up and she walks on her toes" It really made me want to share these special boots that were suggested by the Conductor when Hailey attended Conductive Education. The Tommy heel that is inside this boot, coupled with the strap and bickle really help with keeping her heel down on the floor. They are very expensive (upwards of $200.00) but she wears these instead of AFO's.I will send you the link, but obviously if you are interested in them you should speak with Nina's Dr. first as every child with C.P. has different needs.
http://ablegaitor.com/index.php?route=product/product&path=36&product_id=50
Thank you for starting this connection. I love to find out and learn from others with C.P. and I also love to help when I can. Also thanks for the reminder to link up. I would have forgotten if you hadn't. Janet
I have no experience here, but I think we all have things that hold us back. Some are physical others mental, emotional or spiritual. It is good to learn not to let those things define us. In Nina's case, CP will always be something that she has to deal with and "fight" through, but it doesn't have to stop her from becoming just exactly who God sees in His heart! You Mama, are a blessing!
ReplyDeleteI agree with Sarah.
ReplyDeleteI also recommend finding a different approach.
As Sarah mentioned, there will be some days when it's difficult to overcome her CP. On those days, she may not "win"; that would make her a "loser" and we certainly don't want that! Especially since this is child who seems to struggle with learned helplessness. (I know this was a big problem in the beginning; not sure if this is still the case?)
I think the concept is a good one, but I think you need to rework the wording to avoid winner/loser. You don't want to make her feel bad about herself if she's having a difficult day. In short, I would avoid a "good/bad" dichotomy. Instead, I would try a "good/better" approach.
Perhaps you could say "overcoming" (on good days0 or "living with" (on not-so-good days) or something like that?
It's certainly difficult, as you want to make her feel good and build confidence when she's doing well, but you don't want to make her feel bad on days when she's already struggling with her body.
Best to you and Nina! :-)
-Truewell