What to do for my son

[cyberbarn]

Hi,

I know you say that he really wants to be at school, but I wonder if he needs a little break to get himself better again?

There is home education which wouldn't suit him if he wants to be at school, but there is also EOTAS which stands for education other than at school. It used to be called the hospital service. It is for kids that can't manage school for short periods of time, and typically you get home tuition supplied by the LA so that they can keep up with the work. At least at home it would give him the rest from the 100s of stairs until things get better. Would it be worth having a think about this? Maybe he needs a couple of weeks off to rest and exercise his knee?

The other thing about the sleep is that teens are actually on a different cycle to adults. They don't get to sleep as early as us because they don't produce melantonin as early in the evening. So they aren't lazy, they really can't get to sleep and do find it difficult to get up and so end up with chronic sleep shortage. Russell Foster is one of the pioneers in this area of research and there was something on BBC news this morning as well.

So taking some time off school might help with the sleep problems too as it will mean that he can get up later. Just a thought.

Cheers,
Jennifer

[madmum]

Thanks for the advice,I am speaking to the school today so will ask. They did give him a booklet of work for when he is off. They however penalised him from the attendance and behaviour trip as he had 86.6 attendance because of medical appointments or being sent home sick. He was disappointed,he felt penalised for having hms and also the accident he had at school. The sleep issue is interesting,he was on melatonin before but the consultant was reluctant to do it again. He has worse pain by night so cannot settle. Being overtired makes him vunerable to more injuries and is concentration poor. He also feel he should have the right to being up later,he has had advice from me and medics but he still is not interested(teen?) He has gone again today despite pain. Hoped the easter break would have helped,yes he slept a lot but no his knee did not improve.

[Fizz]

Hi, Madmum,

Regarding your son's school's attitude to his attendance, I think it would be worth querying them using attendance penalties against someone with a chronic health condition. Disability discrimination comes to mind! We experience a lot of problems with my hms son's school, but one of good things they do is put children with chronic health problems in a "ghost group" which means they are in the same registration group as usual but their attendance doesn't come into the rewards and penalties system. As some of the school's rewards are team based it also means the other children in his tutor group and house don't lose out because he is frequently off school.

We did have problems with my oldest son being discriminated against due to a (different) health condition. For the first few years at the same secondary school he was excluded from rewards achieved for good work because he did not meet the attendance criteria. Annoyingly, they made exceptions for children with detentions (who were also supposed not to get the rewards) but not for my son who had a consultant's evidence for his absence! At the time I did not raise it with anyone as we needed support from the school and I did not want to rock the boat. However, when they had an anonymous questionnaire I did raise it then and, whether they noticed that or not, they did change the policy in following years.

Similarly, in Yr 11 they had an attendance criteria for being allowed to go to the school prom. This time we wrote in to say that we felt if it was applied in his case we would see it as disability discrimination, and the school were quick to reassure us that they wouldn't count his illness against him. So I think it would be worth discussing this with the school.

If your boy is having lots of problems with stairs (I'm assuming there's no lift) could he attend lessons on the ground floor and then work somewhere else eg library, special needs centre or whatever is available on the ground floor, for the lesson which are upstairs? I know this isn't ideal but it would keep him in school more and would keep the social contact going.

My hms son's attendance is still terrible so we have been wondering, reluctantly, about trying home education. It's not what he wants either but as he's not getting into school very much, there might not be a good enough alternative. In our area he gets access to online education but it doesn't link very well to what's going on in school (as it has to be used for children county wide) and it's hard to get lessons at the right level so we think he'll struggle to do well at GCSE level if he's still in the same position in Yrs 10 and 11. He's currently in Yr 8 and so we have a little time to play with but as he needs to choose GCSE options next academic year it will soon come round. Like you, we have heard all the "Is it because you just don't want to go to school?" comments and it does get very frustrating. We're paying for Physio as the NHS won't see him again and I'm now trying a DIY cognitive behavioural therapy at home because CAMHS say he's not "ready" for the CBT sessions they offer. What a pity the magic wand we all need doesn't exist!

[madmum]

The school used the excuse the cinema only allowed 100 pupils last trip so they had to limit numbers to those with 95% or above attendance and good behaviour. They were still oversubscribed so teachers decided. They say they would not normally do that. I have asked for a quiet area if in pain to elevate his leg but still try to stay. I have been told before if he cannot do stairs there is little point in being there. As for a laptop they do not have them and are not confident with all the paperwork involved that he would get one from the council. If we got one he could use it as long as he carries it and it is charged at home(different from before). There is talk the school may get a laptop for each child in september paid weekly by the parent. They also say exams cannot be done on keyboards you have to write(will check this out). He has also been told to be more vocal with issues that need solving ie seating in class(we do not have special chairs you know). They all picked up on the sleep issue and thought 9.15-9.30 was late,trying to get understanding of pain preventing settling to sleep was like this . Will look at other issues with him tomorrow. We spoke about melatonin and its use,the nurse sounded more positive but not sure if she is following this up. Yes he needs sleep but no point in going earlier as pain is high and he does not sleep!

[trekster]

Have you considered reporting the school to the governors for disability discrimination? The schools attitude is disgusting to put it mildly.

[madmum]

Trying to work with them and educate them. Will approach the council myself about funding for a laptop. Apparently there is talk that maybe in september all pupils will be able to rent a laptop that after 3 years they will own. Will ask the welsh assembly government about rules of providing equipment and the exam boards about exams being written or typed.

[madmum]

Still struggling with my son. He is in constant pain and feels his kneecap is slipping out and in again. School is not good,missed thursday and friday after a bad day wednesday. He stayed after a phone call to me but in student support so did not do lessons. He has worked out a good day is 156 stairs and a bad one 452. Is it any wonder he gets fatigued and his knee is hurting so much. Monday he has the O.T due to check his needs in school. As regards a laptop he now has to go through an I.T assessment and then if reports agree the school can apply for funding but no guarantee he will get it as money is tight. In the mean time he has to struggle and fall further behind. He also cannot march at band as he is in too much pain and is struggling with sleep and daily living. Going to orthotics tuesday to look at knee support and get new boots ordered,also will see his physio where we need a serious talk. I am struggling to keep him optimistic about his future and feel useless as I cannot help him. His pain relief is not working either. His rheumy has agreed to see him on June 26th. Whitsun cannot come quick enough. He is constantly fatigued and very moody. My own pain makes everything worse. Anyone got any ideas?

[Fizz]

Hi Madmum, Did the OT come up with anything to help your son at school? It's frustrating that the school cannot/will not work around reducing the number of lessons he has which are off the ground floor. Have they got an access policy? Are there any other children with mobility problems in the school e.g. wheelchair users? Christianne said her son was using a wheelchair to help him cope so perhaps it might be worth finding out what happens at his school. Are there any disability groups in the area who might have experience of getting schools to look at what children with mobility problems need and who can support you?

I have to admit my son isn't having much luck at the moment either. Having been off school with a virus last week, he got in today and in the first lesson, art, they were building a "sculpture" out of school chairs. This involved taking the chairs from a classroom on another floor, assembling them into a sculpture, photographing it and taking the chairs back. So 2 lots of stairs whilst carrying chairs and then lifting and rearranging them on the pile and then doing it all in reverse. Consequently, he felt too yucky for his next lesson, came home and has had constant back, shoulder and neck pain since. Admittedly, he should have told the teacher (who doesn't see him often and won't have realised) that he can't do all that but he feels embarrassed and does not like to stand out or appear different. I'm thinking of producing a laminated card that he can hand to any member of staff saying he has hms and detailing what he can and can't do (and explaining that he might seem ok at the time but that the pain will get him later)and who they can approach in school for more information. In theory my son has access to a laptop at school but I don't believe he's ever used one in practice. Part of the reason is that he's so rarely there but I think if he was in more frequently for longer periods he would be able to use one. He had an OT letter from GOSH saying he should use one for sustained writing tasks.

[madmum]

O.T was useless. Did not see him in class but in an office. Got him to repeat writing test,I said not to as already assessed as needing a laptop. Reckons he can write quicker but small(not for any period or legible). Says physio job to deal with stairs!! Other items requested like art equipment she says I have to provide and as for sawing etc in d.t he has to build up muscles in his fingers(he is a clarinet player!). I am going to complain as she did not do what was requested,I will speak to the manager and request a different O.T,preferably one who understands hms and is willing to listen. As regards a laptop he has to take an ICT test and be quicker than writing speed(I am suspicious that is why she said he is quicker!) to qualify then a grant has to be applied for and they are not sure he will get it. There is no lift at school so no wheelchair,his physio asked today can he do some lessons downstairs but if he is in student support he gets no teaching. School will not allow a crutch on the stairs. I agree with the physio he needs to be in school,she said it is hard to deal with if school are not helpful. He gets a leg brace on June 5th so we hope it will help. Will have to speak to school again tomorrow,why does it all have to be such a fight.

[Bryony]

Hi know this bit late but have you tried parent partnership or parent to parent? They are organisations who will attend meetings with you with the school and have all details of what your son is legally entitled to (very different to what the school would have you believe he entitled to). They are fantastic and will put the school in touch with other organisations to help get funding. They will not take much messing off schools at all and take notes of meetings then give you typed printed copies of everything said and agreed in the meeting. They will liaise with school for you and make sure they listen to your points of view. I can not express how valuable they are. My friend had a child with as physical condition and they made the school put in double hand rails on every stair and got funding for fully adapted disabled toilet. Also they can arrange for your son to be put on part time school table and lots of other items too while he works up to getting stronger (well strong as pos) They have been amazing with my two children too. slightly different needs as well as hms but still good to have for support. hope this is of some help. xx

[madmum]

Thanks Bryony,will look into it. Only 2.5 days to go then 6 weeks break.