#6
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Alex got his rifton pacer when he was approx 2 1/2, he has got quite good trunk control although he does tilt to one side. he can sit unaided for a few mins when he chooses to! he has never crawled and left hospital using a sleep system for positioning during sleep because he could not even roll from side to side. Alex had a trial on a disability trike yesterday and amazed me by actually moving the trike forward slightly i burst into tears, its the little things that make you so proud!
I never thought it would happen to me.
#7
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he cant sit up without a chair with lateral supports, but he learnt to crawl at about 28 months, its still more of a bunny hop than anything else, but it gets him from a-b which makes life easier for everyone :-) xx
#8
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Hi,
My son can walk as long as I stand behind him (not touching him - just the knowledge that I'm there). We have gotten to the point where he can walk 500 steps unaided in the house with a short break after say 100 steps. It's all psychological now and the NHS won't help us overcome it. The consultant recently hinted that I was being a pushy mum who can't accept that he'll never walk (when I asked for help - she hadn't even seen him in 2 years so I despair) - they now want to refer him to a psychologist/psychiatrist to see his motivations around it. My son used to crawl around the house and preferred that - we banned crawling and now he uses the walker. He has a kaye walker which he can run in and play football in. He also has an upright walker with arm troughs which I bought myself off ebay (as the physio wouldn't help us) - he uses the upright walker in the house. The kaye walker at break time at school and to play football. An electric wheelchair to go any distance and a manual chair too (which he can't push himself so he goes backwards in it pushing with his feet).
To get to the 500 steps took a massive amount of commitment from myself and my husband - i.e. daily sessions pushing him to go further, building up confidence, counting out loud, tons of strategies, tears sweat and emotion etc
When we don't do it regularly he reverts back to using the aids and loses the ability to walk even 3 steps.
I've asked for a walking bootcamp to be set up where the physio uses crash mats and arm rails etc where he can learn to walk (and fall/lose balance) in a safe environment - (they look at me like I have 2 heads). If you get a good physio then they'll do that for you maybe over the holidays.
By the way - in hydrotherapy, over 12 weeks, 2 good physios got him to the point where he could walk across the swimming pool unaided (no armbands). The 12 weeks are over now so maybe when it starts again we'll manage to get him more confident again.
I know he can do it, but unfortunately we get no support on it and unless we push him daily it doesn't look like it's going to happen.
Hope this helps some of you out there. (and sorry if I sound negative but the professionals have on the whole let us down for the last 5 years)
#9
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These things are all so interesting, Grayson is 23 months this week and has CP unformally diagnosed as they keep looking for something else. He also can not walk/crawl or weight bear through legs, he has just started sitting unaided but mainly when he wants to not consitant.

I thought walking was a no go so its encouraging to hear such stories, it gives me hope and I think hope is important (certainly doesn't make us pushy)

Chrismum - its interesting to hear about the hydrotherapy cause I have been fitting for some sessions for the exact reason, I feel Grayson will love it and help his fright.
Our son very much like yours goes backwards if we do not take him out of the comfort of his aids regulary.

Thanks again
Kara
Mummy to the most beautiful little boy Heart Grayson Heart
#10
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Thanks for the reply graysonsmum.
After posting yesterday, I had a good session today working with Chris again in the house and he walked from his bedroom to the kitchen without a walker 5 times. I'm going to keep working on him and I'll let you all know if I manage to build his confidence up enough for him to take the steps without my encouraging him (i.e. off his own initiative).
Good luck to all out there,
chrismum



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