secondary school and absences

[Fizz]

Is anyone else in the position where they may have to give up working to support a child with regular absence from secondary school? I don't necessarily mean deciding to home school a child, but rather having to be there physically because attendance is poor and cobbled together arrangements keep breaking down? I am in this position at the moment as despite our best efforts, our son is only in school for one hour and twenty minutes with the rest of the time working independently at schoolwork at home or taking part in on-line lessons for sick and excluded children. Although my OH usually works from home, he can't work and give telephone support to colleagues and support our son with his schoolwork and cope with the days when he is just crying (son, that is) when it all hurts too much. We've struggled with this for a year and a half, always expecting that efforts to get our son back to school full-time or even longish part-time will be successful but so far it's not working. Having recently bought the book Hypermobility, Fibromyalgia and Chronic Pain I've discovered that we haven't previously had enough explanation of how chronic pain syndrome affects people and so we've probably inadvertently been making things worse. Cannot afford to give up work and I'm fairly sure we won't qualify for DLA for son or any other benefits. We've got appointments tomorrow with various people medical and educational and I'm hoping there's a way out of this but can't see it at the moment.

[madmum]

Sorry to hear your son has so much pain. I am assuming he isworse than my son. Sounds like he needs pain control dealing with both with medication and psychological support. Has he has intensive physio? My son is in last year of junior and does miss school due to health and appointments. He has had some improvement since his residential but at the moment he is struggling with ibs. I want to work hard to improve things before september when he starts high. Good luck with medics etc. I am at home due to my disability but as a single parent i do get tired when up half the night and then dealing with his pains and mine all day.

[Fizz]

Hi, madmum,

I think we've had some similar experiences with our sons as we both seem to post in the same areas of the site about similar things. I don't think my son is worse than yours. From what I've read your boy is certainly more hypermobile than mine, who does not have your son's problems with knees maltracking etc. It's the pain amplification which has always caused most problems and the demoralisation that sets in from feeling that his body is letting you down, which is a relatively new experience for my son as he felt quite fit until an accident 2 years ago triggered the syndrome.

I suppose the part of all this I find most difficult is that once he'd been diagnosed and seen at GOSH, where he then had the intensive physio, we gained the impression that this condition was fairly controllable in someone like my son who isn't massively hypermobile, and we expected life to start to return to something like "normal" and this just has not happened. Rightly or wrongly (and I could be being a bit paranoid here), I feel there is in assumption from professionals both medical and educational that as parents we are somehow handling this the wrong way and that if we just sorted ourselves out our son would be in school, fully mobile and relatively pain free. Sadly up to now there has not been a consensus about how this happy state can be achieved. We have made progress in that my son is not as oppositional to dealing with this condition as he was at first. Also we are gradually getting to a position with school and educational services where they'll let him attend school for an hour and a half and then keep up to date with the rest of his work using e-learning (provided by the education authority) and independent study. This seems to fit better with his current energy levels and pain coping ability. Previously we were all making constant arrangements to increase his hours at school which always broke down and left him unable to cope even with the e-learning part.

On most days I'm still optimistic enough to believe that if we take things in a more gradual and carefully organised way, he'll gradually improve and be able to attend school regularly full time. I'm just not sure we can achieve this without one of us (which would have to be me) being alongside him for the next couple of years. I'm prepared to do this but as it's close to financial suicide without getting some serious help with our existing outgoings I only want to launch into this if there is no alternative. So I hope that someone out there can give me information about their experiences of doing something similar.

[madmum]

We do seem to have trod the same paths. I do agree with you about the medics,alexander is told he can do what he wants as long as he keeps up the physio(however he still keeps falling and without his medication still is in pain). We have been told he has pain amplification and is more sensative so when he hurts himself it is difficult to know how bad it really is. He currently has ibs issues and today again has been sent home. I am being told to send him to school but he is getting worse at attendance. The o.t spoke about pacing skills but no more has been done. I know he is not happy at the school so this will impact on his health but moving seems pointless when he leaves for high in trhe summer. I feel i have stood accused of being too soft but when your child is in pain or unwell it makes youn feel awful when you pack them off knowing they will be back. I survive on my own disability benefit,i get no help with mortgage or council tax or any other cost. It is not easy. I have applied for dla on his behalf,despite all the letters i put in they wanted initially to hear from the school and then as they did not do it now they want more from his rheumy(hope she supports it). I put how he is on his bad days. Still waiting for a decision but do not have much optimism. If i am lucky it would mean i could get a disability rate child tax credit for him. Obviously every little would help. We now travel regularly over 53 miles to get his treatment as the local hospital is useless(i have a formal complaint going on). I want so much for him to be able to cope better,as a single mum with hms i am tired and in pain myself so it is difficult to keep the energy going when he is up all night. We are waiting for camhs,wether they can help him remains to be seen as he does not like talking to people especially about his health. He says he does not want hms. What i feel is missed is that children have their own feelings and men are always worse a coping with pain anyway. Try putting in for dla,the worse they can do is say no. If you want we could pm,maybe the boys might like to be in touch and perhaps could help eachother? Hugs to you all. Kay

[Fizz]

Thanks madmum, I'll be in touch soon. Don't seem to be able to think straight at present as all my waking hours (and many when I should be sleeping) are taken up with thoughts/worries about whether I should give up work. Will mull over this for a while and will pm you in a day or so. Son currently is a bit fed up of having to talk about how he is as we've just been to appointments at school and hospital so I won't broach the subject just yet as I think he'll give it an automatic no. When he has come round a bit he may be more prepared to acknowledge that being in touch with someone in a similar situation could actually be beneficial.

[madmum]

Fizz i know how you feel with the constant thinking,although not the same i have complaints on going with social services,hospital,school/ed dept and may even be doing the police so with them and alexander i rarely rest. Alexander would be happy to email your son if he wishes,even just chatting on their own level may be helpful. My son gets frustrated saying how he feels especially if he feel he is not being listened to. We are here for you and your son. Take care. Sending love and hugs to you all. Kay

[star gazer]

Hello to you all,
We have a very complex situation!! I have been diagnosed with PoTs as has my 18yo daughter at the NHNN in the autonomic unit, my son however is now 16 and our paediatrician has been desperately trying since August to get him into a specialist clinic as she feels he also has PoTs and between the three of us we also have joint hypermobility although my son is not as yet affected by pain it is the heart and blood pressure probs along with very disabling headaches,also when he is tacychardic he is getting chest pain. I am on ESA contributions based in the work related assesment group and have successfully applied for and received my "blue badge" as pain when walking and heart probs are a real problem! Anyway back to my son who is now year11 at school and about to sit GCSE's, he has been out of school for several months as he was really to poorly to attend and when I did get him into school I would then be phoned to come and collect him because he was too ill to be in school. We had meetings with educational welfare and with the support through letter of our G.P they could see this was a geniune problem. I was then told I had been taken off the list of "suspect" parents and there would be no lrgal procedings!. In September having seen the consultant at the local hospital she wrote to the school telling them that my son was too ill to attend. With this the school then had a legal obligation to support him at home, he was referred to COOS (children out of school) who with all the evidence and a home visit decided that my son would be allocated a home tutor through county to support him through his GCSE's. We have had to cut down to the minimum of 5 subjects which he just about copes with but at least he will leave school with something. He has been allocated extra time for exams with supervised rest breaks. If you are going down this route it is imperative that you have a consultants letter confirming that your child is too unwell to attend school, apparently a G.P letter will not do. I know that different counties may have different provision, we are in Surrey and they have provided 5 hours per week of home tuition.
The Paediatrician has been told that my son cannot be seen at GoSH as he is too old and can't be seen at NHNN because he is too young so we are in a very grey area at the moment. I am having my first consultation with Prof Graham next month so I am hoping he might be able to give me some advice re my son. The paed in a last ditch attempt referred my son to the adolecent unit at UCLH but still no news. The school situation although very stressful can be resolved if you have the right support, it's the medical side of things that is sooo stressfull as I too have joined all the other parents with sleepless nights and being tired makes it feel more difficult. However we try to remain possitive and at least school are onside sorry if this is a long post it is my first one and sp might not be up to scratch as I am sooo tired after another all nighter. I am glad I am not alone fighting the beurocrats xxxx

[Fizz]

Hi Star gazer,

I have a friend whose 15 year old has been seen at UCHL (are those letters in the right order?) so this should be possible for your son. Hope the appt comes through for him.

I have 2 children who have needed education support at home due to illness and severe absence. I think the reason consultants letters are required for this sort of thing is that GPs are seen as too accessible and likely to write supportive letters in almost any circumstances to get troublesome patients out of their hair (and their surgeries). This may not sound like the GPs some HMSers have but I think that's what some local authorities are afraid of as supporting children at home is expensive.

[barkingmad]

Hi Stargazer,

I just wanted to let you know the HMS Clinic for adolescents at UCLH is still up and running but a bit busy. Your son can be seen there and should be offered an appt within 13 weeks of them receiving the referral.

BW Donna

[Rosie]

Hi Stargazer

My daughter, 21 next week, where does time go? was seen at the adolescent clinic at UCLH for her EDS from the time she was 15. Originally my GP referred her to Prof Grahame's clinic as i had been there, but we were told she was to be seen at the adolescent clinic instead. There were very good there, best of all they referred her on to RNOH Stanmore for her scoliosis, which was brilliant! So they not only diagnosed her EDS, they were also happy to refer on for other issues. we were very happy with them, I hope you son has his appointment soon.

Rosie

[star gazer]

Hello to all
Long delay in posting but many things have happenend, Joe has been up and down quite a lot just lately and was taken to A&E by ambulance last friday diagnosis cellulitis in his lip he was very unwell and it affected all the autonomic probs too anyway after the lip ruptured Max Fax saw him and were worried about the wound healing and want info from Prof Grahame about wound healing probs in poss EDS! so I phoned UCLH adolescent unit only to be told that he is not being given an appointment at their clinic, they have written to our local paed explaining why but we don't see them till next week so won't know why until then. However I have my first appt. with Prof Grahame/one of his team tomorrow so I will go armed with Joe's referral letter and family history ironic that I am being seen after referral from NHNN. When Joe's paed referred him to Dr. S at the adolescent unit she included a full family history including 19 yo daughter who is being admitted in to NHNN for 5 days in April, who has also had some basic "joint tests" at one of her pots appointments and they noted paper scarring and stretch marks on her legs and back (she is not over weight). So I am totaly astonished that Joe will not be seen in the adolescent unit. As he displays the same markers as my daughter and NHNN are referring her to Prof Grahame too!!.
Anyway an update on secodary school, Joe has had a GCSE science resit two weeks ago and the invidulator came to our house so he took the exam at home, the school had also arranged for him to take the other exams at home if he is not well enough to go to school on the exam days and at the moment it looks likely that will be the case as he is no better and atm is spending a lot of time sleeping, he is getting more episodes of tachy and is getting chest pains too. At least when he was taken into hospital last week they could see that although he was tachy it was sinus rhythm and not an irregular beat although too fast. however I won't relax until someone does a 24hour tape or an echo to check that it is a sinus tachy.
Joe seems to have lost all contact with friends at school and that affects his moral, do you have similar problems with children missing school a lot?
and how are you all getting on with the education welfare issues? hopefully things are sorting themselves out for you all and things are in place for your children including things like extra time and rest breaks for exams especially the English papers which are 2 hours long! even a half hour paper with extra time should give them an extra 7 minutes! the average allowance is 25% extra time. Also if you have a very poorly child maybe think about whether or not they might be in a better situation taking their exams at home where they don't have to worry about getting up dressed into school uniform and then make the journey and be totally exhausted bthe time they get to school.
good luck to you all with your endevours
best wishes
Sarah

[Fizz]

Hi, Star gazer,

Regarding children keeping in touch with friends, I've found that using the computer has always been the best way when they've been off school for any length of time. My youngest, 11, uses on-line games for his social life and to take his mind off pain.

My oldest one, now 17 and with a different medical condition, had a lot of time off school from aged 11 to 15 and used MSN and later Facebook to keep up with mates. We tried to get him to invite people round but he often felt too rough to cope with that. At least when chatting on-line he could just make an excuse and log off when feeling tired; whereas if someone had come out to see him, it could get a bit difficult to tell them to go home. I know it's not the same as being in school and seeing people face to face but was better than nothing and kept him in the loop. Also sometimes playing on-line games with people you don't know can be good - my boys liked being able to be themselves and not just an ill person. Hope your son gets some help soon and can work towards getting a proper social life again.

[star gazer]

Thanks Fizz,
Yes I have noticed the use of online games and chatting has increased, I wear ear plugs to sleep atm as sometimes if he has been very exhausted he will sleep all night and into the next day and then be too awake to go to sleep the next night, but as you say it is at least a form of contact where they can talk to people without being the sick person. and yes I have noticed that when he is not feeling well or needs to rest he just tells them he has to pop out or go for his dinner In some respects at least I always know where he is and what he is doing because he is always here so I don't have the additional worry that some parents of teenagers have when they a re out until all hours, mne is up until all hours but it's only in the next room

star gazer

[Fizz]

I just wondered how everyone was coping with the new school year. My son, now in Year 8, has had a couple of bad pain flare ups since term started despite having had a relatively long stable period before this. We can't work out what has set him off. It's usually a sudden increase in activity levels but he's been pacing well recently so we are puzzled. School is supportive at the moment and he's got a medical certificate for reduced hours which he is gradually building up.

However, some friends have had bad experiences in local schools, with the dreaded standard letters cropping up again which threaten to de-authorise absences even where there is medical evidence to show that the child has health problems. I realise schools have a duty to ensure good attendance but I find it infuriating that children who are unable to manage high attendance are so often treated as though they are skiving off. I hope that not too many of you "bendies" out there are having this problem.