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About sawjd

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  1. Hello everyone, Our k has been out of school now for over seven months. He is not aware that surgery looms for him at GOSH (fixing a catheter to bowel to kleen prep every/every other day),This can take from 30mins to 2 hours to do. Our k asks me to look to see if he has cleaned himself properly, so at least he is trying but its not always easy. His faeces are extremely sticky (like glue) and it difficult for him but at least he is trying, when its too difficult we have to give in and help him. This has been the case for over two years but before he was refusing to try and even wipe himself. So currently that is the state of his behaviour / medical need. I refer to both as his behaviour led to stool witholding and thus caused constipation. He has been offered OT (just 12 sessions)to try and overcome physical difficulties but what he learns outside in a OT session will stay outside, unless he has been specifically told or SHOWN how to wipe himself properly at school. Other problems are that despite his access to a seperate toilet at school he finds it difficult to be around other kids when he is unsure of a bowel movements as he knows its difficult for him to wipe himself, he is so overly anxious about the other children finding out about his bowel problem, this combined with his refusal to do dressing up, struggles with literacy, school trips. not eating etc. This has been a nightmare for us in the last two mainstream schools. He is trying to help himself but this is because he is at home and not at school where there is time limits on lessons and trying to be quick, bear in mind the school have known about this for two years back in 2010. Its only the last year and half they got round to getting a private toilet for him. Also the headteacher thinks i should do what ever necessary to get him in to school even if that means smacking him (smacking a ASD child). She is (you can fill in the missing blanks) to even suggest such a thing. The school are REFUSING TO WIPE OR HELP WIPE OUR SON, once he has this procedure wash out he is likely to have accidents that he cannot hide anymore or fake illness anymore to avoid being around other children. Statement says he must do this himself, the statement is finalised and we will have to wait another year to change it unless anyone knows how to bring it forward. He will need extra help to assist with a catheter anyway surely. School rang out of the blue and suggests coming to talk to our k, yet they (school) have our email, so why call. I have asked them to email us with their intentions. I have asked if they have staff or their special needs assistant to deal with this type of care. Cannot see how we can manage wash outs yet due to home situation. I believe we are right in wanting/demanding this to be there in the statement, how will he manage without this extra support initially. I am aware he may refuse this help but he won't do what he needs to at school?. A smaller class (relaxed unpressured environment) permanently is what is needed. All helplines closed today and its knowing what to ask for. Statement isn't even one to one hows that for an insult. Done all we can. At least they have picked up the phone and called but with what ?, They knew this procedure was on the cards.....done nothing to avoid it. Same people there. Our k does not feel safe there, so now what ?. k says 'tell them i am not here'. Says it all really. If anyone reading this from the LEA just like to add this, re arrange the following words, its, like the stable, horse, door, bolted, locking, after. Any thoughts, opinions. Best wishes, sarni
  2. Hello Everyone, Please can anyone advise, we had the statement back from the LEA with a snotty nosed report added to it which we already had anyway, yet there has been no plans, no phone call from the school on how to get our k back to school. (sarcasm, yeh they really want him there don't they) We are appealing, our k won't go back. We are waiting for a response still from the SENDIST. My question is do we have to let LEA know we are appealing now that we have the statement ?. Best wishes, at least the sun is shining now ! sarni
  3. Hello everyone, we need a barrister/solicitor but cannot afford appeal support, if we don't do this our son goes for surgery instead of behaviour therapy at special school, does anyone know of anywhere that we can get funding as we do not qualify for legal aid. Other half works and earns just above line. We lost our Tribunal as they (LEA) will not fund our k into a special school. They believe Haringey has good child care services and outreach services to support our k. Haringey do not have good services, and are useless in co ordinating and GOSH will have to pass care support on to them. Basically it comes down to this. Our son is on the brink of havng surgery for ACE PROCEDURE as he has bowel problems and has proved he is struggling with this alongside anxieties/school refusal for dressing up days, events, school trips in mainstream school. In a special school he would cope better and have a better chance of managing his bowels with therapy. we have had taster sessions at this special school and also he wants to go this special school we found local to us. Yes we had to argue about the expenditure and if mainstream could meet his needs, the Tribunal sided with LEA down to one HORRIBLE WOMAN WHO will be called MRS C. I was not allowed to speak long enough barely a sentence here or there and all the time she put questions the to LEA but they came up with no solution on how to get our k back to school at all, no recommendations were suggested or put in place. If this surgery goes ahead and now it looks likely as we cannot find funding, it will mean that the mainstream school will not be able to help our k as his statement will have to change to include his catheter and level of care needed with this. They refuse to physically touch our k should they need to basically they won't, they will call me and i will have to come and get him, i could be the other side of the borough shopping and i don't drive. We have TWO WEEKS TO APPEAL, surgeon is wanting to do a letter stating that he should be in a special school otherwise he will have to perform surgery. Can't submit this as its new evidence, although i am querying this as its not new but ongoing, Tribunal knew of appointment letter as it was in bundle of tribunal pack. Any help, anyone, anything please. There is no waiting list and the surgeon reckons two to three weeks this procedure could be done with months of wash outs laxatives etc. Our k was anxious about his bowel habit before this, now this will make it worse. with thanks, Sarni.
  4. Hello everyone, sorry i have been off this site for some time but we have been extremely busy collating and copying evidence seeing consultants regarding getting help for our k as his tribunal is fast approaching. In the meantime we are now concerned as k is still not being able to feel the need to go properly and now the consultant has said that k is a 'good candidate' for a procedure called ACE. My question to you all is does anyone know what to be wary of when having this procedure. I could have screamed at the consultant as he was saying its now a medical thing that k has and i said this situation developed as he was originally stool witholding which is why k's bowels have becomed so stretched that he now cannot feel bowel movements. Its behaviour as k sits in his messed pants and does not clean himself unless told to do so, so some level of supervision is needed. Its been a hectic week and we are concerned now as to what if anything does or is needed or who to inform about this procedure. I have tried to google this but there is no connection between school and this procedure. Is it just a case of letting staff know. We have sorted to a degree about the use of pads from the continence service so that is up and running, but we will not get a lot and k does go through some pads per day. If anyone knows of this procedure or has experience we would be grateful if you could give us any advice or tips. Many thanks, with regards sarni
  5. Hello It seems i am having to do a lot of research in preparing the case for our k and one of the things i need to know is the difference between funding for children with needs in mainstream and special schools. LEA maintened special school (does cost of OT extra come under NHS and i think Coginitive Behaviour is not something NHS do for children) Independent school (approx i have already) How do i go finding out about it. (something my IPSEA volunteer should be doing) Also does any know if they can have cognitive behaviour therapy in school as the private OT and ED Psy is saying that k needs this and a sensory diet. Any help or advice or expirence in the above i would be very very grateful for. I have tried to do my best to look/google into this but had little or no joy as info is quite vague. Thanks with regards sarni,
  6. Hello everyone, i have a meeting on Thursday where the EWO wants me to sign a medical consent form even though they know of ks medical condition. Its been a rough two months so far, won't go into too much detail but basically got sent a letter threatening me with prosecution if k does not go back to school. (i know they have to fine me first but if i pay a fine then it looks like i agree i have done something but i have not done anything wrong). K is refusing school as he does not feel safe with the other kids and them knowing about his problem with his bowels. He is frightened they are going to find out as he has been off school since september. K spent a few days at GOSH, his bowels have gone back to being bad its only been three weeks. (think i posted this before) and the EWO sent the first fast track letter then while he was in hospital asking why he was not at school (EWO knew exactly what date as i sent them evidence in advance). Now the EWO want me to meet with them and sign a medical consent form WHY ? is beyond me. Should i sign this, how does it prove his refusal to attend. I have doctors appointment tomorrow about k. The EWO think its me keeping him off but we have recordings to prove otherwise. We already have a tribunal, ( we have requested a change of school ) . What is this all about ?. I have asked SENDIST to send a letter asking for 'expedited hearing'. What should i do now ? Any advice please, best wishes to you all with regards sarni
  7. Hello everyone, Thursday night when we got back from GOSH, eventually got into emails and downloaded five responses of LEAs reply as to why our k should stay in mainstream where his needs can be met. When i read what was downloaded i was shocked in some places where they have acutally lied about the support and level of support they have given our k. Firstly we had a TAC meeting where i never received the minutes for (i now know why). In this meeting the outcome was that k was to have someone sit with him to support his anxieties over lunchtime. We have proof on tape by k himself that no one has ever sat with him to check if he had eaten or not. We have him on tape saying he has delibrately missed lunch on more than one occasion as it takes him too long to eat. Secondly there was the receptionist who was supposed to accompany him to make sure he used the toilet, this was never done. Thirdly, strategies that were in place and being used yet never happened until after 22 may 2012 even though they say these strategies were before that date. Also the LEA response (clumsy as ever) have put that he has been statemented and given 10 hours of one to one support, he has not, he has just been given 10 hours of teaching assistant , the offer of a LSA has been highlighted as something extra as well as the teaching assistnat in their repsonse but the LSA is not mentioned in the statement at all. NOW FOR THE DILEMMA WHAT WOULD YOU DO (as we cannot trust the school anymore and these are tactics to avoid paying for the specialist school as we have moved k twice now and this will be a third mainstream school) Seeing as we can prove the above, should we, 1) Go ahead at the tribunal and prove what we have on tape, the outcome being he will be just moved to another mainstream school . 2) Say well the strategies they put in place (even though they have lied) have not worked as he still cannot manage special events , dressing up days and struggles making friends therefore a special school would help him. We have been advised by IPSEA that we need to prove that k is better placed at a special school and we need to concentrate on that rather than on what the school have/ and have not done. Also if anyone can re assure us that as we are asking for a change of school and awaiting a tribunal hearing, so we are in a tribunal situation and (date is in february) we have been told that they cannot take us to court for k not being in school because legally we are in a tribunal situation. Any solictors out there we would welcome any comments. The school staff are unacceptable and we can prove they are liars. The school failed their ofsted but i will need to check that if they have been taken off special measures. According to the head she says they have been taken off since september 2012 but its not on the ofsted website. Also how could they say they have done all they have when we only had the tribunal for a statutory assessment in January of this year (jan the 5th ). They (the school) said k did not need a statutory assessment , then the tribuanl awarded us a statotury assesment so the LEA had to give a assessment and gave in and said they were going to give a statement of special needs. All the help (so called) has already amounted to 10 hours before it was on the statement anyway and its vague as the teaching assistant is specified delivering the 10 hours and its not one to one which is what he needs. His difficulties are not drinking which contributes to his idiopathic chronic constipation, his low self esteem (wants to die and keeps saying whats wrong with me when he has had to sit in his own poo at school). we cannot trust the school. WHAT WOULD YOU DO ?. Many thanks for your answers. sarni
  8. Hello everyone, Well it has been a very unpleasant and very stressful 4 days regarding bowel prep and endoscopy. Our k has not long been back from GOSH tonight and the initial diagnosis is ..... idiopathic chronic constipation. We knew he suffered from chronic constipation and even though the staff at the hospital were wonderful there is only so much that they can do regarding school support for this type of condition. While our k was in hospital (the EWO knew this) they sent a threatening letter saying if we don't sign a parent contract they will either fine us or imprison me for three months if we fail to sign this and the date is Wednesday for this meeting. Our k has only just come out of hospital tonight, i do not know what to expect for the next few days regarding his bowels, he does not want to go back to school as he has been struggling with this for years now and this has been going on for two schools (he has changed twice now.) The LEA are refusing a special school as they say the current school is adequate and can meet his needs yet on his statement (the one which we are disputing) they are saying he has no problems and he has access to a private toliet which is now next to his class. The school are REFUSING TO CLEAN HIM SHOULD HE HAVE AN ACCIDENT AS THEY ARE NOT ALLOWED TOUCH HIM YET IN A SPECIAL SCHOOL THEY CAN. (sorry, i have put that in captials as i am angry but want to highlight this is a real problem). We are having problems in managing/now having to retrain his bowel movements and on the statement it says our k is responsible for his own self care management (if he could manage he would not have got to this stage to be hospitalised) He has been given a personal care plan that means ###### all as the emphasis is on getting k to seek guidance and that he will be advised that the toileting is a private matter and that someone will give guidance until he learns. They will not become physically involved. The personal care plan is mentioned as a title on the statement but not specified on the statement.(which means they can change it anytime they like. Can anyone tell me with this part of ASD/chronic constipation can we ask the panel that the school have to provide someone to help clean him should this arise. What should we be asking for to help our k manage this. It will take years for his bowel to adapt and get regular as they (GOSH) found his bowel was extremely stretched. They should us a picture. It has taken fours days of kleen prep, sodium picosulphate (his was sick with this so they had anti sickness medicine) senna and 6 to 10 litres of fluid just to clean him out and i was giving him movicol before all of this. They put a tube down his nose and all sort of intavenous lines going on. We don't want him going through this again so we know its his behaviour that has lead to this or its part of this but the school do not accept this. The hospital could not confirm its down to his behaviour but said the lack of fluid does not help him at school and he does not drink well at all at home either. So now what ? The trust is broken and the lies this school is coming out with is unbelievable. I have been looking into the this condition a bit more to see if there is anyone out there who has found a way of providing support for this at school. Can anyone help what provision should we ask for ? should we fight for the special school still or can this condition be managed in mainstream ?. I feel so angry and so upset for k and what he has had to go through and the thought/fear of going back to a incompetent school i just can't put him through this anymore. please can anyone shed light on this problem and what direction or areas of support should we be looking at ? many thanks, sarni.
  9. just wanted to let people know i have checked my profile and updated it. Especially where k is concerned. I can't believe its got that bad and how i should have spotted the stool witholding before. I live and learn. with regards once again thanks for all the posts and help and support, i would be so lost with out you. sarni.
  10. Thanks raydon, Our k is seeing the OT soon, did anyone give you any advice at all on how to overcome this ? with regards sarni
  11. Hello everyone, Can anyone please tell me if they have come across this type of behaviour before about chewing. This is starting to make sense to us a bit more regarding our k and his sensitivities. After k did his runnig up and down the living room for a bit, he settled down and we had dinner, me and my partner (he came downstairs to eat with us for a change) we started talking about food and while k was relaxed enough i asked him why does he spit out his meat (we have tried him with steak pie, lamb, beef,)after chewing it. He said he finds it too big and it takes to long. I said what takes too long, he said it takes too long to chew it to make it small enough and i have to chew it to tiny pieces so i can swallow, it has to be soft. Those tablets you gave me were hard (pellet study for GOSH) so spat them out, I like to chew my food really small. No wonder he has not been eating school dinners and why there is a problem with certain food. !!!!! After all these years we have finally found out why his mouth gets sore, why he takes so long to eat, (even though i cut up food for him) and this explains the type of food he eats, and why he refuses other foods. I feel really stupid for not picking up on this earlier but it makes sense now and i will ring the dietician to explain this. I honestly have never come across this before, our k explained that he likes to chew his mouth even when there is no food in it and sometimes he bits the inside of his lower lips . It makes sense now why his lips become so sore it looks like he has put lipstick on and around his lips. His lips swell and become cracked and a couple of times when he was at school (changing school again !) they put vaseline on them. The doctor has noticed about his lips as well ,i thought it was he was a bit dehyrdrated how stupid do i feel now. Why could he not say anything like this earlier. Why after all this time. He said it like it was a matter of fact so casual. I feel like a big penny has dropped and both me and his dad just looked at each other. At last another piece of the puzzle fits. Our k is off to see the OT next week and i rang her and mentioned this and she said the cover something called oral motor skills, has anyone heard of this ? Does anyone have experience of this ?. Still in shock, with regards sarni
  12. sawjd


    Just wanted to agree with rufusrufus and karmadestiny. Our k and us were told the same thing about it being constipation and when i explained at GOSH (great ormond st) they said it was down to constipation, i said its because he was stool withholding ( i did not know at the time and just thought his lack of drinking at school was to blame, teacher complained he was leaving bottles of water) at the previous school and of course this has built up and continued onto his next school. Our k says he cannot feel it and we have to ask him is it belly sick up or belly poo down so he has to think and check. His system is out of sync. He is 10 now and still has difficulty wiping himself which leaves him sore. It being dealt with now and everything is in the process of getting sorted one way or the other. He now has so much anxiety over this it shadows other areas of difficulties. Just to refer to CE3K i thought things were ok with the toilieting at school, they weren't and our k did not want to talk about it then so of course things developed to a point where he had to have private access to a toilet as he has to wear pads at school because of overflow/result from constipation and soiling his underwear daily, (gone through so many pants that soaking them and boil washing in the machine they were beyond saving)., I am not saying this is the case with your grandson its just worth checking to see if the toilet at school is next to his classroom, what are the facilities like, proper soap, i would not always rely on teachers who are extremely busy as its something they could miss, just like we did, teacher is unaware and we were left thinking he must be going to the toilet at school. Through this personal experience i am a bit more wary now. Have you checked what he has for school dinners, does he say he likes them ? sorry i have not read your profile so do not know much about your personal situation. I just wanted to help as i am always on here asking for help just wanted to give some support back. Best wishes sarni
  13. Hello everyone, The SENCO was very unhelpful in explaining the 'new tracker system' in place of the old IEP has anyone else had this. Really stressful day and they still did not sort out the statement properly. How could they (LEA) have agreed to name a school when the school was in a state of special measures in the first place is beyond me. The headteacher has said its out of special measures and all i could find was its satisfactory. Yet it has supposed to be taken off special measures as of 1st September yet i cannot find it anywhere. Such a rotten day. Eldest one (21) has just had a massive nose bleed and made a mess in the bathroom everywhere. Rotten end to a rotten week. any help would be gratefully received many thanks sarni
  14. Hello everyone, a bit of long one but please read on makes interesting reading. Our k is currently off school because of fear because/and of constant soiling. This has been proved by GOSH,and doctors letters saying our k is sore as he has difficultiy in wiping himself. The school according to headteacher is just out of special measures and we are currently in the process of going to tribunal date set January 30th. Now our k is refusing to go to school and his anxiety over work and his bowels and the way they manage him and their (school) lack of understanding all came to a head today. We want a change of school and we put this in tribunal back in july. We want the statement changed aswell and quite frankly the headteacher lost it with me today and screamed at me '(slammed down her pen and screamed how dare i say we are not meeting his needs as he has not been in school this past month) i of course was referring to before the summer as the school was not coping and they lied they were coping. She is furious that our k has not started back at school. They think that k and us are playing on his bowel situation and that we are making him anxious. This is exactly what she ACCUSED US OF and what she said WE CAN DO. she accused us of making him anxious and talking about his anxieties putting to much pressure on him failing to get him in on time and causing a bigger gap in his education (he is anxious in the mornings) not being firm with him. also she said that he is fine at school even though the school rang to say he is unwell and he faked it and we have evidence on cd to send to tribunal telling us he lied. She also said the following Her staff won't be dragging our k to school when he refuses. They will not come and pick him up. K is 10 this october. Its up to us to drag him in and its OK TO SMACK HIM AS ITS LEGAL SO LONG AS I DON'T USE AN IMPLEMENT. She refused to listen or watch the stuff on the disc. Our k is sore and has trouble wiping his bottom, he is angry they keep putting down a colour as he struggles with literacy and there is nothing in place to help him deal with sports day and parties and assemblies. They want to know in writing from professionals as to why he cannot be educated in school. According to someone i spoke with today, they said so long as we have asked for a change of school we are not seen to be refusing school and therefore should avoid prosecution. In the meantime what are we meant to do. K has been to the other school and likes it and i know its not about liking its about him feeling safe. The headteacher has verbally commented (i said i want this in writing) that should k have so much soil running down his leg she will personally change him even though she said that no staff are allowed to touch him. She then went on to say do you think we would really let him sit in soiled clothes. Yet he won't change his own clothes for PE. There seems no end to this. I want to complain that she screamed at me, there was no need for that at all, i told her i have trouble dragging him to school and she told me if i get him in everyday for two weeks he will be fine. CAN YOU BELIEVE THIS WOMAN. We had trouble getting him into the other school because of the dressing up issuses and school plays and school trips. We moved school so we could drag him to this school because its closer but we can't do it anymore. This has been like it for two years at this school and the previous school. This headteacher does not even say hello when i go to pick k up from school, she says hello to all other parents. They don't understand about trust, our trust and ks trust has been broken by this school and i can only tell them what he says on the quiet to me. They accused me not just the headteacher of making him anxious by putting ideas in his head, they asked does he say he is anxious to you or do you suggest things. He is anxious when it comes to anything with school trips, events. I can't believe this headteacher says i am putting him under too much pressure and that i can legally smack him. If i can complain and i so want to, reading others efforts the response has been 'they all heads and teachers stick together. Now this school has put in place separate toilets with individual locks that k can have a key to that the class teacher can have also the toilet is on the same floor as his classroom. This does not solve the issues around dressing up and events and parties, the SENCO said we can't stop having parties for the children, DID WE ASK THEM TO course not. well thats it, on my leaving i said whats going to happen on monday if he is refusing again, the headteacher said you will bring him in. I said hopefully, no she said you will bring him. If only they had told this to us before about the toilets and being refurbished i could have told k and felt more positive about him going back, they could have told us of the plans around toilets. K has got it in to his head that he is not going back. I cannot physically get him dressed he is ten almost in two weeks time, i asked the head you expect me to keep doing this she said yes and i said i am not willing to be kicked anymore. so now what ? anyone, can anyone help, many thanks sarni
  15. Hello Everyone, Tribunal papers have been sent within deadline. K refusing school and new school (independent) has assessed him and said they can take him. They agree that his anxieties and his bowel problems can be treated and met by them. They have a toileting program that k can use as mainstream school don't implement what little they do have. In the meantime what do we do. It will take time for the tribunal to meet. K is refusing because of his bowel problems. I looked at the website regarding health and safety and what he suffers from should come under long term illness but i think it applies to children who are severe and suffering from cancer. I want work that i can do in the day with him. I can do the work with him during the day not in the evening which is why i had problems in working with him with regards to homework. My partner needs my attention and my son normally works in the evenings but this is changing and is variable. So i have to be adaptable. K started behaving badly (would not eat his breakfast) and soon as i said about taking him back to school, i have never seen a boy move so quick to eat. He has so much fear and its a shame. The school know of his anxieties and did nothing to alievate them in order to prepare him for coming back. We now have a meeting with ks mainstream school and i believe they are fishing to see what we will say at the tribunal. I went to see the EWO and instead i spoke to the advisory officer (k was there) and she was trying to get k to speak and all he said was he is going to the special school, when the officer asked him why was he not going all k could say was my bum is bad and then he carried on playing game. They told him he is too good for the special school and the advisory officer for autism told k ' you will get your mum and dad into trouble if you do not go back'. I cannot believe she said that to him. Can i ask for them to give me work for him. It will be just me and him so there is a good chance i can get on with it without any interuptions. Has anyone been in this situation where you are waiting for things to be decided but your child is at home and how did your LEA deal with it. Many thanks sarni
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