04 August 2011

Walker or Wheelchair

Due to Oli's impending 4th birthday, and increasing size, a debate has been brewing in my head. When he was little, his SB differences didn't really stand out. Can't walk? Neither can other babies. Crawl a lot? So do other toddlers. Not potty trained? Neither is anyone else your age.

Now we are past all that. We are hitting a point where his differences do stand out. And differences are okay, but I am realizing that maybe we have been to complacent, and Oli isn't really equipped to enter the pre-school years and beyond.

Oli has always been a reluctant walker. He hates his HKAFOs, and as a result, doesn't like to walk. I do agree with him that the HKAFOs are clunky and unrealistic; it is hard for him to play, b/c he is locked into standing position. They are too hard to lock/unlock himself. as a result, we let him crawl around the house. I recently realized that while he walks the hallways at school, they have been letting him crawl in the classroom.

The last round of serial casting made it worse -- b/c he was out of his braces for so long, getting him back into them and walking has been a struggle. And, they may want to cast again in the near future. We have an appoitnment set up for next week to discuss this with ortho, but Tim and I basically agree that we don't want any more casting. It is disruptive to him, expensive, makes Tim miss work. We would put up with that, but it also DOESN'T WORK!

Now that he is 4, the crawling isn't really okay to me. And he is getting to heavy for me to carry. So, at what point do we find a more permanent solution? Will he be crawling around the house at 5, 6, 7, 10, 15? I can't imagine he would be. When we went to a SB walk when he was a baby, we met a teenager whose primary means of getting around the house was crawling. I was appalled. But now we are on that path. So what do we do?

I am starting to think about a wheelchair, but am really hesitant b/c:

-- I know he can walk, but he just resists (strongly) when I try to get him to walk. he walks ok for his pt, and around the school.

-- I'm afraid if we put him in a wheelchair, he will never walk again.our clinic has indicated that walking is a skill that should be developed between 2 and 5, and if we miss that window, it will be very hard to pick up later. and if we start using a chair, the ease it provides will make both us and him reluctant to engage in any walking. 

I guess the crux of my problem is that we want him to walk to achieve maximum independence and fitness, but he is hardly ever doing it. So he is less independent than if we had a wheelchair. however, i don't want to "give up" and get a wheelchair, b/c i would feel like we are failing him since he can, technically, walk. 


I don't want him to look back as an adult and say "Mom, you were the parent. Why didn't you just make me walk?" Granted, he screams and cries and just stands there when I put on his big braces. He passed up a trip to the library the other day b/c I told him he had to walk if he wanted to come.


Tim and I have talked about it, and we are going to try to just get him in the braces 1-2 hours a day, and see if we can increase it from there. But we have said this before, to no avail. I can sense Tim's hesitancy, b/c everything takes longer and is much harder with the braces. They are not realistic for the house, or even for many trips out of the house. But it all circles back to the question of: What else can we do? He cannot crawl/be carried everywhere.

We were at PP beach a few weeks ago, and saw a little girl zooming down the boardwalk in her wheelchair. It haunts me b/c I want Oli to have that level of independence, but I want him to do it walking. Why do they seem to be mutually exclusive?