help Please I am at my wits end with this.

[2bulletsformyvalentine]

I have been having some problems with ddwho (13 in april) has cp. she can't walk and communicates with a symbol system,
she has a standing frame at school that she should go in every day. weight bearing is really important to her long term health.
she won't she kicks of major big time. it can take 4 people to lift her into the stander. and most times they have to give up due to safety issues.
I have talked to dd with no luck she jsut says it makes her legs hurt.
I have started to think this might be more to do with her age and because in her head she is normal iynwim it is something she can control and say no too.
I am going to being seeing the head of phisio and wanted to approach the age and control part of things. I wondered if anyone had any ideas.
I realise not everyone has had expierence of standers. but I am sure your dc's kick off about something so could do with some tip and advice.

No experience of CP at all as you know - but would using a timer help? Start with a couple of minutes and work up, with a reward at the end of each time period? Feel free to ignore if it's a stupid idea but didn't want your post to be lonely for long!

sounds like she is asserting some power like any teenager! my dd is 4 and hates the stupid standing frame.
Does bribery work?

My first thought was also bribery! Do the special school staff not have any advice - surely they can't be that unaccustomed to stroppy teens???

I agree with sphil. Start with a really small time period and a really big reward- the thing she loves the most. Then extend the time slowly.

I am very used to teenagers with CP and very used to using standers and the advice given so far has been spot on! Starting very small and building up with rewards is a great way to go.
I think you've probably hit the nail on the head with the control issue too. There will be an awful lot in your DD's life that she has no control over simply because of her disability and she has discovered that this is something she can control and gets a response (negative or positive makes no odds, she's controlling the situation)
Perhaps a review of the stander should be undertaken with the class team. Teenagers grow and positions can change quite quickly within a stander. Do any other students use it? Is there a precise setting for your DD that all staff are aware of? How is training undertaken regarding the use of the stander?
I can probably think of many more questions you can ask if you'd like!!

What about a reward system and a chart to record how she is doing in it? Tbh I think it's a difficult one as she is old enough to understand the issues and make decisions.
WHy not have her frame next to a friend when she's in it?

Oh and what about headphones with her fav music to listen to whilst in there.

It is painful for a lot of kids. Perhaps they need to cut down the time she is in there for.

thanks for replies
she has been like this for ages. i have tried talking to her. the phisio has talked to her. I think everyone and their dog has talked to her. with no luck. I have suggested only using it for fun stuff like painting or cooking with no luck.
I can't believe the school can't deal with it. it is a brilliant school but they don't seem to be able to deal with a pupil with a mind of their own
rewards don't work, seh is too old for star charts. I like th music idea but not sure if that would work in the classroom but will suggest it.
they have just reviewed the stander.
trouble is the phisio only works 2 days a week. and wanted to put dd in stander to try it. but teacher wouldn't allow as it itteruped lesson.
(phisio leaves at easter and I am trying to push for dd to be moved to a phisio who is fulltime)

so does she do ordinary lessons in the stander then? could you pay her a "wage" per minute in the stander - sort of grownupify the reward system???

Christie they have just checked the stander.
but i will mention the time thing to the phisio,
totalchaos. good idea about the "wage"

oh i love this at last I am getting some ideas

The class teacher has a ridiculous attitude IMO. This makes me SO cross. Therapy should be an integral part of the curriculum and it should make no difference whether the physio is there or not. In my class, we take advice from the physio team but plan for and deliver therapy within lessons as it's so incredibly vital for students with CP.

Is she likely to be influenced by an older child at the school using their stander? Would they be able to get your dd in the stander at the same time as another older child using theirs?
Maybe she wouldn't feel the need to control the situation if all the focus is not on her.

a lot of disabled people hate hoists and prefer to be helped doing a standing transfer.
Friend of mine has severe CP and he stopped using a standing frame at 15 when they couldn't make him anymore.

I disagree about the teachers being able to make a 14 year old do something. It's not that easy whether a child is disabled or not.
I dont understand the point about the teacher not wanting her lesson disturbed. All groups of people in the school should be working together including education with physio.

as far as I know she is not hoisted. but i will add that to my list of questions.
NMC she has too stand. a friend's dd didn't weight bear and because of this she now has osteoporosis(sp) at 20!!

the wage idea is a good one.

this is going to sound like a very ignorant question 2shoes so forgive me, does the weight bearing hurt her? when i say hurt i mean she is useing muscles she wouldn't normally and therefore there may be some associated ache involved.

does teh school have a swimming pool? or does DD have access to a pool. maybe she could build up resistance in the pool where there wouldn't be so much pressure on her muscles but she would be building the strength there so that when she rties standing she would be more comfortable?

Cp isn't my area as you know, so apologies if these are all rubbish suggestions

the tendons in her legs are probally a bit tighter than normal.
The way I look at it is.....imagine you have been sitting down for hours. when you stand up your legs are going to hurt a bit. hers would be like that but worse. but as the phisio said to me the more she stands the less it will hurt.
they do swimming once a week. they have a LOVELY really hot pool.

2shoes have only just seen this, my DD used to cry when she had to use her stander mainly when coming out of it. Maybe the release of coming out felt odd??? I don't know. They gradually built up her time from a few minutes to 30 minutes. They also allow her to lie down and entertain her with headphones, mirrors etc. I know my DD is only 7, so not a cool teenager yet. But wanted to let you know our situation re the stander.

thanks for all your replies. it has really helped. (Christie I might be getting back to you about this if I have no luck with phisio)