hi all, my first post here, im guessing my circumstances differ somewhat from fellow forum users but unfortunately i couldn't find a forum to fit our situation, maybe if i explain the problems we are facing you may appreciate the title "desperate in kent"
my son is 13, when he was 12 weeks old he was diagnosed (eventually) with Respiratory syncytial virus (RSV), a fairly serious virus that can leave a child with long term health problems & has been known (in rare cases) to kill children as old as 11.
this left my son with a severely weakened immune system, throughout his life the slightest contact with anybody with a cold almost always ended up with him catching it & then it rapidly becoming bronchitus or a severe chest infection borderline to pneumonia, with antibiotics rarely helping.
lost count of the times we would be pacing up & down at our local a&e with him in my arms hooked up to a nebuliser.
needless to say his attendance at school was pretty poor, usually averaging around 51%.
whenever he was away from school for more than 10 days the local education,welfare & attendance service were notified, usually visiting us & demanding medical certificates which our doctor would supply, these usually kept the wolves from the door so to speak, although for a while one of the e,w&a officers we had to deal with was pure evil, to describe her as a nazi really wouldnt do her justice.
throughout my sons school life keeping a flow of education has been difficult, a couple of his teachers would at our request prepare some homework for him which we would collect & return to the school for marking when complete, the rest of the teachers would refuse to help, stating there was no legal obligation to supply work so they wouldnt.
i should also say that for the limited time my son was at primary school he was bullied terribly by one child in particular, something that we fought against for the five years he attended there, but the school rather than admit they had a problem brushed it under the carpet.
even when the e,a&w service contacted me during a bout of illness i pointed out the problem of bullying, they said their remit did not extend to problems suffered within school, i replied that when i got him in to school his life was being made hell & i was fed up with them hounding me & if welfare was was their concern they had better act on this......they sent a letter to the school stating they were aware of a problem & they would be monitoring the situation....the headmaster later called me & said if i didnt like how he ran the school i could always take my son elsewhere.....i wish i'd recorded that conversation, complete with my reply full of expletives.
we later found out that pretty much every child in my sons year had suffered some form of assault at the hands of this bully at some time, & at least one girl was sexually assaulted by him......and still no action was taken....disgusting.
my son now attends secondary school but still his health problems continue.
we have been considering a permanent move abroad to a warmer/drier climate with the hope of his health improving, in august '09 we travelled for a holiday/recce to cyprus & the difference to my son was amazing, within days he was swimming/snorkeling/jet-sking/paragliding/sailing, the strength & new found vitality this seemed to give him moved my wife & i to tears on more than one occasion.
in the same spirit we took our son to florida in august '10, i have family in the usa & felt we should explore the possibility of that being a suitable permanent destination as well, but while it was more suitable to settle there with regards to work/education etc the high humidity in the summer months had a detrimental effect on my son, he became ill & is still suffering now, having missed school for nearly 6 months.
again no work has been supplied nor home tuition offered.....although when i requested homework on the same basis as when SOME of his teachers at primary school had done, initially work was promised, school liason stating they would contact all of his tutors & round up some work, this offer was quickly withdrawn with no reasonable explanation.
i have jumped through all hoops put in front of me by the school, supplied them with a stream of medical certificates, copies of prescriptions & even the empty medicine containers when they were empty, yet still they do nothing in return.
we have attended multi-agency meetings, where we have had the support of the e,w&a service yet it seems the school are a law unto themselves, not having to answer to anybody.
the worse thing is we chose this school as on paper it appeared to be the best performing school in the area, but we now realise its more concerned with its ofsted figures & statistics, our sons absence having a significant impact on them apparently.
the school is now demanding that we remove our son from its roll, & have him attend the nearest hospital school unit which is approximately 45 miles away & would probably involve up to 3 hours travelling daily as its a fairly difficult route, especially during rush hour.
my reply to this was if he's not fit enough to travel 20 miles to & from school how on earth can he be expected to travel 90 miles to & from the unit.
& dont get me started on the fact he then may be placed with other sick children & he has a very low immune system & currently cannot have any antibiotics following a severe reaction......or the fact that we would be expected to shove him in to a minicab on a daily basis, although it would be funded by the county council im not sure i would be happy entrusting my child to a stranger whose only real qualification is a drivers license......am i being being to cautious ?.
also, about 3 weeks ago i get a call from the school, a women calling herself the school child protection officer, stating she had concerns that our son had received no form of education & that she would be passing our details on to social services as a matter of urgency, i replied i had given the school every opportunity to assist with some form of education,which they had failed to do...this call was extremely upsetting for my wife, & i was about ready to throttle someone, how dare they take this attitude.
im sorry if this rambles on a bit, as you can imagine this is a very emotive subject & want to make sure i have most if not all of the relevant info posted up in order to get the best informed reply.
unfortunately my sons g.p. is not considered in a position to be best informed on my sons current health problems with regards to making recommendations that would enable us to either get my son a modified timetable at school or request any form of home tutoring, even though he has known him for nearly 10 years & has been a doctor for 30 years.....instead we have had to run the gauntlet of numerous "specialists", or bunch of quacks as i prefer to call them.
i should also mention that my son has been refered by the e,w&a service on 3 occasions to their own appointed doctors.
the first doc (who i'll call doc A) we saw approximately 6 years ago took down our sons history & when we mentioned RSV closed his book, happy that this was the significant factor in our sons ill health.
the second referral was approx 4 years ago, who i'll call doc k, was in our opinion at the time a waste of time, we explained how his continual chest complaints were keeping him off school but instead of addressing this problem she told us she felt our son was suffering from dispraxia, explaining it to be a form of autism & how she felt we needed to see other healthcare profesionals to address this.
we left that meeting both furious & upset, partly because our concerns for his health problems as we perceived them had not been addressed but also upset that "could we have got it wrong" & maybe there were other issues.
we eventually decided that this "quack" probably had a pet subject that she liked to bandy about whenever she got the chance, so we dismissed her as a waste of time, vowing to have no more to do with her.
the most recent referal was last week, what a surprise we had when we got to the appointment to find it was again doc k, the dispraxia obsessed doc, here we go again we thought, & sure enough her line of questioning aimed at initially our son & then us seemed to be of a phsycological nature, at no point addressing the physical side of my sons health problems.
eventually i had to stop her & point out the irrelevance of her questions pertaining to my sons problems, she the asked for our contact numbers as she wished to call us to discuss her concerns for our son as she did not wish to do this in our presence.
i said i would rather discuss them now & if need be my son could leave the room, which she did not wish to do......AND THEN SOMETHING HAPPENED WHICH WAS LIKE A BOLT OF LIGHTNING.......
she was flicking through a file of papers on her desk & i glimpsed upside down something on headed paper from my sons primary school sent to her in 2007, with a particular sentence highlighted, i then told my son to leave the room & asked the doctor if i could see the paper for myself......the school had said that my son was withdrawn, had problems socialising & making friends & possibly suffered from asd.
i then explained if he was withdrawn or had problems socialising it was because he'd had the ###### kicked out of him on a regular basis & the school had done their best to cover this up, including it would seem writing bs letters inventing non existant disorders for my son.
it was almost like a lightbulb appeared over doc k's head, she apologised to us, stating that this kind of bs was not uncommon & how she would not need to contact us any more, & again apologised.
i then had my own lightbulb pop up, when my son began secondary school he told us how for a couple of lessons a week he attended a place called the judith centre, how he explained it initially was it was for students who needed specialist help for specific subjects, we thought "GREAT", they were going to help him catch up on anything importatnt he may have missed when ill.
later we found out that most of the other students in this class suffered from asbergers/adhd/asd, although we felt our sons presence there was unusual, he said he enjoyed the lessons there so we did not interfere.......we have since found out that nothing educational took place there, they just played word interaction games.....or chatted in general.
i now realise that the actions of the primary school managed to falsely label my son, since then no consideration has been given to the real health problems that have beset him & there is probably loads of false paperwork doing the rounds, which i might add we have not been privy to any of it, had we been made aware of this we could have challenged it sooner.
our current plan of action is to get access to all documents pertaining to our son under the freedom of information act, & where there has been misinformation or defamation to get it corrected.
we also want to get some form of home tutoring in place, we dont feel that any return to school is feasible at this point as he is still unwell & its likely that there will be no attempt to help him catch up with what has been missed.
if there is any information or links available to assist us it would be greatly appreciated, we seem to have hit a wall with any form of authority, nobody will tell us what our rights are for our son either locally in kent or nationally.
i hope this post is received in the spirit of which it is written, while my son does not have asd or any associated disorder, he is sick & has been continually let down by those in authority, all we demand is that he be given a fair chance like any child deserves.
all replies will be gratfully received.
many thanks...........mark
