As some of you know I've fought for a long time now to get Oksana some help walking. Can she walk independently? Yes. Having said that, walking long distances or in crowds with her is a nightmare. We were told at the MRI that she has brain damage that affects balance. As I see more and more kids with CP learn to walk I can definitely see how different she is in the area of stability and balance. All kids with CP fall but Oksana is out of control and all over the place when she walks. She can control it but it takes so much effort. Put her in Target with people walking all over the place and bright things everywhere you look and forget it. So like I mentioned before, Shriners recommended putting her in a walker during those times.
I called her PT when this happened just to bounce it off of her and she thought it was a great idea. She talked to me a bit more about situations where it would be appropriate and situations where it was unnecessary. At that time school was only briefly mentioned and I honestly can't remember if we labeled it under unnecessary or didn't label it at all. All I know is using it at school was never put on the table. Only a few days later I got a letter from her. She wanted to know if we might possibly consider letting her use that walker at school ONLY for long distances in the hallway. She cited a number of reasons including that she falls a lot, kids bump into her and she loses balance, she is all over the halls and has trouble walking straight, etc, etc, etc,. She confessed later that she was unsure how I would react. I told her she didn't know me very well then because my reaction was "HALLELUJAH"! After all this time someone FINALLY sees what I see and they aren't making their decisions on how Oksana should walk based on spending 2 hours a week with her in a controlled environment and then expecting that to be how she walks 24/7. Apparently she had a walker in a storage closet that she pulled out for her and she said it was great. To start with, she noticed that the kids were so much more aware of her and are very careful around her. She also said that when she walks without a walker her gait, form, and control go out the window because she is working SO HARD to just stay upright. YES! That's exactly right! She said using this walker gave her a great chance to practice correct gait and form....something she hasn't had for a LONG LONG time since we ditched that last walker. She also mentioned that it gives her some independence since she can get a basket for it and carry her lunch box, library books, etc.
So as of right now we are still waiting on the walker I ordered, and who knows how long that will be, but until then she has the loaner to use at school. Like I said in the title, you may look at this and think we are backtracking with her but I call it progress. She's finally getting what she needs to be able to function in the world around her.
3 comments:
My cousin had CP. Back in the 50's when she was a child, the idea was that walking was the the end goal. I watched her struggle on her sticks throughout her life.
At some point I realized that because so much emphasis was put on the "getting there," that by the time she got there she was too tired to do anything. I hope that whatever Olivia ends up using for mobility that it works to enrich her life and doesn't take it over. Not sure if that made sense, but (I hope!) you know what I mean!
I think it doesn't matter HOW she gets somewhere. What she does once she's there is what counts. If she uses a walker to cross the yard and then gets on the swings or jungle gym with the other kids that's terrific. If she can scoot down the hall with her walker and get there to have lunch with the other kids that's terrific. Getting to the destination the best way for her is what is important. I can't wait to hear how walker walking changes other things.
Hi, I just came across your blog and felt I should comment on this. I have CP, and it took years, surgeries, and various equipment to get me walking. Finally I was able to walk on my own, and did so for several years, but eventually my Mom pushed to get me back in a walker because it was ultimately better for me. I even went back to using my wheelchair for long distance, despite being capable of walking independently. It just helps because of balance issues and being jostled in crowded areas, as well as stamina. I don't see it as backtracking at all, and I am grateful for the resources available to make it easier to function independently from day to day. I think you are doing a wonderful job raising Oksana, and helping her to reach her potential. :)
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