Standing frames at Secondary School

[supermum98]

Does anyone have a child who uses one in a main-stream secondary? I had a bit of a tense discussion in meeting last week with physio. DS used one to end of year 6, 40 minutes a day, quite happy in it and did Maths in it using tray. Larger one ordered for secondary, ds said ok about using it so long as in private. Arranged with Senco could have private area to do stretch. Have free periods for overlearning could do stretch in. Now physio saying is of no clinical benefit because can't get ds straight in it. Have suggested getting rep in to adjust frame but physio has refused. My point is why did very senior physio recommend use to end of year 6 and suddenly when he is at even more risk of developing contractures do they want to disband. Arguments seem weak to me, one is they are not used in secondary (so what, think outside the box and treat on an individual basis). Feels can do other stretches to compensate, true to a degree, but some are not prolonged stretches and the only prolonged stretch is on a wedge and from experience he cannot do work at same time in this position. Other problem, TA not happy to put it in him. Anyone know what my rights are here? I don't agree with clinical decision and would like to persevere with standing frame stretch as long as he will tolerate. THinking of getting rep in myself, but think SENS department will not approve. Once it goes out of school will never get the frame back in, have delayed it leaving so far.

Would appreciate opinions and advice as to how to manage.

Hi supermum,my dd is at a special school so not much help there but as you say once the standing freame is taken out of the school situation then it will be hard to get back in.If i was you i would fight for it to be kept in.Is there any other professional who would back you up maybe a paed.It is so vital not to loose this.We our battling with dd at the mo as she has lost the ability to stand so the use of standing frame is paramount to avoid contractors.Sorry not much help all i say say is fight.

Thanks Growlybear, my ds is 13 and even if I can quote other kids use them at Secondary school age would help. Is your dd secondary age? My problem is my ds is borderline for use, ie he is mobile. However he has hip flexor contractures already and he is at risk. The physio consulted a colleague who ageed with her position. I however consulted another experienced physio, who agreed with me that it would be of clinical benefit, so it is 2 all, which probably reflects that its a difficult one. I quoted the Tescos slogan 'every little helps', they were not amused. I can't see why we just can't give it a go. I will have to win the TA round though, who will be even more entrenched now she has someone supporting her position. I pointed out that we are in this for the long haul and we want him to be able to walk to the pub with his mates in 10 years time. I don't know what my rights are as a parent in all this. I know the Grey report said that parents arn't listened to enough and seen as part of the team around the child. Thanks for your encouragement, don't like the conflict situation must say.

Hi supermum my dd just gone up to secondary school part of her school.Yeh i have used that very same slogan before and it went down like a lead baloon.Do you have a standing frame at homeI suppose that that is your other option.Then that solves the solves all the issues surrounding this.Conflict is never nice especially when you are only trying to do the best for your son.

Thanks growlybear, yes you are right, we could use at home, although ds adamant he doesn't want it at home, in case his friends see it. If I lose with school then I guess we will have to do some creative thinking as to how we hide this huge piece of apparatus. Garden shed maybe, there must be a way. Good for me to be able to quote that they do get used at secondary school, thanks.

Really hope you get something sorted supermum.Perhaps you could make a cover out of mayve old duvet cover or as you said stick it in the shed.Good luck.

Sorry supermum just had another thought you could go down the line that with all the growth spurts he is likely to have it is even more important now to use the frame.As we are finding growth spurts have a huge impact on the body.

Hi Supermum.
I'm a paediatric physio and it is difficult to comment without knowing your son, school or family situation. However, I would really recommend trying to sort out a meeting with the physio, LSA, SENCo etc, (if you haven't already done this!). I think things can ften be sorted out when things are discussed face to face. Good luck, I hope you sort things out.

Thanks 2sons1hubby, appreciate you contacting me, wouldn't be fair to talk shop. Have been in touch with standing frame rep. who is happy to go in to school to see if can get ds in better position. Spoke to physio today and has agreed to meet with rep. kindly checking research for me. Is prepared I think to go the extra mile to see if we can use it. Negativity of TA towards frame worries me, but not sure she understands why they can be necessary. I think it is a decision that could go either way, but I would rather take the cautious road, given much of the 24hour postural management that he had at his special school has been stripped away as he is now in mainstream. That aside, if the rep can't get ds into a better position, will feel we have tried everything and happy to call it a day. Also if ds. shows any sign of real distress about using it then would consider otherwise too.

Hope all goes well supermum.Good that physion now prepared to go the extra mile. Good luck

sometimes TA just need a bit of reassurance. i'm sure the rep and physio will sort that out.

Hi Supermum
DS is in secondary and uses a stander, but like growly he is in special school.