Hi everyone, I feel like I need some advice. My son Tommy ( 10 in may ) is finding walking so hard now ( he can only stand/ walk when wearing KAFO's). Its such a battle every day I'm wondering how much longer we should do it. Is there a point where we should just stop and use a standing frame or something instead. I know about the benefits of standing but I hate upsetting him,he really doesn't like it.I just don't know what to do for the best.

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Hi Claire, this is such a difficult time for you. I know as I went through it with my son at the same age. At the same time, it is such a personal decision for each family. For us it just kind of happened. It was such a struggle physically for both my husband and I and our son Sean. Especially because he was a big on the heavy side back then and lifting was tough. One day we just decided that it was time for the wheelchair full time and it ended up being an easier transition for my son than us. As difficult as it is, we found that by staying calm at each milestone in this disease so to say, it reflected on our son and he followed suit and did the same. Good luck.
I meant to say difficult time for you.........you probably figured that
we were on holiday when adam stopped walking it is very difficult but he adjusted to it better than we did and we realised it was better than falling all the time and i think he felt more independent because was able to move around more freely and safely.we adjusted because he was happier. sometimes its about making them happy not the progression of there condition.hopes this helps but i am sure you will know whats best
hi claire
i agree with mia, it is a very difficult time and a personal decision ... also that our son found the transition a lot easier than i did too!
for us it happened in an instance; fred fell quite badly (we even took him to a&e to be checked out) and basically fred said he couldn't stand/walk again.... the doctors couldn't find any damage
i think i was quite angry with him for a while... he'd given up, where was the 'fight' in him... but i realise now how much he was struggling and that he made the choice that was right for him at the time (i've never told him this, hopefully never shown it... on the whole he's a content young man...)
what i would say is talk to your physio now about a standing frame. fred fell in may 08, we saw the rep with the physio in july.... and it didn't turn up until early december due to time for approval by health service and delivery.
the delay has ment that fred's body has 'relaxed' and being upright is very alien to him, he's finding his feet get sore and his ankles want to role outwards... we are still working on getting everything 'right' for him. the delay has not been good for him

good luck
anne (UK)
Hi Clare, our son Alex had just turned 12 when he himself made the decision to use his chair full time. He was struggling with his walking and it was an effort for him, he had also had some nasty falls which is really upsetting for them. We talked about him falling and he said he thought it was time to use his chair. Our doctor had also said that the boys usually let you know when they have had enough and not to make him struggle its not worth it. Hope this helps, Lorraine
When our son Justin stopped walking, it was a somewhat gradual thing. He was slowing down walking and falling alot. We had already had the powerchair for about a year. He was using it at school the majority of the time. He was really having troubles getting around at home also. It had gotten to the point where one of us had to walk behind him at all times to support him. On Nov. 11, 2005(that date seems to be ingrained in my memory), we got him up that morning and he simply said, I cant walk. I cant do it. We put him in his chair and he never walked again. It was hard on my husband and I but we hadnt seen Justin that happy in many months. He had the freedom to go where he wanted to as fast as his chair would get him there. He could keep up with his friends at school. He loved racing ahaead of us at the store and telling US to hurry up! Hang in there. This is a rough transition, but once you get through it, life does seem to become a little easier.



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