sawjd

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

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

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.

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

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,

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

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

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.

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.

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

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

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

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

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

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

Hello everyone, Any advice on what to do next or where k should go would be gratefully recieved. K has refused school and been off for the first week of the start of the school year. His statement was finallsed on the last day/week of school before the summer hols, (no surprise there). Ks bowels/overflow have made him so anxious now, that he is refusing to go back to school. He is saying he cannot keep faking headaches to get out of class/school everytime he is unsure of his bowels and how messy he is getting. Last term he thought another boy could smell him as the boy was saying out loud that 'something smells in here'. Its playing on ks mind and also (not sure how much of this is true ) that the teachers try and help him but he cannot do what they ask and so he gets what they call 'put down a colour' for bad behaviour, yep ,bad behaviour. I asked him what does he do when he cannot do the work and he says i sit, do what i can and then they just leave me so i do nothing for the rest of the lesson. This approach apparently happens in RE, Grammar and literacy, these are the main areas that k has difficulty in. Since he has not gone back i have been phoning the PP. (parent partnership) and i managed to get hold of the same person (spoke to them last year) and she said 'do you want him to go back ?'. I know what i felt when she said it, relief that someone else suggested what i was actually feeling. I do want him to go back to school just not one in mainstream. Our problem is that he has a new statement and it looks like we have not tried to get him back, when we have, K has never even met his new school teacher and this was supposed to be set up before leaving for the summer hols. It also looks bad that it appears we have not given the new statement a chance to work. Fine, let them come round our house and try and get him dressed and drag him to school. The new statement has ten hours of little support (lunchtime supervisor who has no exeperience in high functioning autism) and its not one to one support. I have had no access to his books from last year on parents evenings or even the open evening. On his last report (i eventually got it) it says he has to make sense of what he is writing. This school clearly does not want him there so why should we persist. Honestly i have no fight left so when the PP person said 'not going back' i felt her suggestion was almost relief but where to now ?. K has to be assessed at a special school and he has visited this place before, he knows there are other children like him there and he wants to go but will the LEA pay ?, (i won't hold my breath). Our son cannot write his surname independently without asking how we spell it. Its a short name that consists of six letters so it should not be hard for him to write or pronounce and our son is nearly 10 years old yet the school still say he has made good progress. He still struggles with his own written language and gives up and unless someone is sitting next to him proding him to go on. Verbally he is good in other areas, in written tasks and time limits on work getting done he cannot keep up with other children and gets punished. We have major problems in getting him to clean himself at home, and getting in the habit of going to the toilet to clean himself so that he does not get sore, we also have problems in getting him to drink and leaving a drink for him on the table does not work, i have to stand there and make him drink it or it gets left. We have a meeting with the PP and then to inform the EWO and the LEA, but inform them and then what ?. We do not want to get into trouble obviously but we do not want k to suffer either. Has anyone been in this position and what advice can you give us to help k. It would be much appreciated and how we need to change this statement. I spoke to IPSEA volunteer two days ago and he suggested contact the EWO and LEA and the school governors, (they have not appointed one yet so acting governor. I can put in a complaint and go down the discrimination route. (they have boxes that k would have to climb over to get to the sink to wash his hands after going to the toilet. The private toilet is in a storage room. (disused art room) . The school in previous months did not even check to see if he has used the sink or used up his continence pads. Any ideas anyone, just for the record as i understand it the law states that a child must be edcuated not necessarly at school. We are not refusing him to be educated at all, its just the school cannot meet his needs and they are not complying with the current recommendations that have been mentioned before they were put on his statement, so we have little reason to believe this will change, given ks last report and the SENCO blaming k for his 'attitude' even though the SENCO knew it was likely k would have a statement and their failiure to put things in place for a smooth return to school after summer. We have audio evidence from k (he did not know we were recording) about what they do at school and the workload so hopefully that will come in handy at tribunal. yours gratefully (and also anxiously now) sarni

Hello everyone, just wanted to know about the problems your children have encountered/or not with regards to swimming. What happens to children when they are physically exempt, do you need a doctors certificate to make them exempt from swimming. Our k has bowel problems so do i ask the school what he can do instead. He will be in year 5 even though he is going to be 10 soon. What year are they supposed to learn. I told him he may have to go swimming this year, big mistake. The school and the LEA have said they want us a parents to get him used to the swimming pool so we should take him. They kmow about the MS. They did not even ask if we could manage this or not and what other help we could seek. My better half has MS and cannot manage, i could take our k myself but he is not wanting to go and i just about cope with him on my own at times with his behaviour. I would like him to swim but its a no no and unless he has better support at school its not going to happen. This is something they have not even put in the statement so whats the point of this. So angry that they (LEA) are inconsiderate. What are your experiences as parents when having to deal with this, how did you manage ? Many thanks sarni.

Hello everyone, Hope people can help me this time, in particular as our k is going (hopefully) back to school. He is reluctant to go back to school as they (school) are not understanding his needs regarding toileting. Our son is the sort that suffers in silence and and has said he is not going back if his bottom is still bad (which it is). He is under investigation at Great Ormond Street for his bowl motions as he keeps saying he cannot feel when he needs to go. ( The reason i say i need help is i am feeilng extremely anxious and so do not want him to go back as its clear to me no one wants him there). The school after much hassle eventually let him use a private toilet but the toilet is in the storage room and he cannot wash his hands as there are boxes in the way of getting to the little sink even though they had provided soap/ hand wash, our k never used it and I said nothing and hoped they would notice that this has not been used. Our k said he goes a wee and then goes out to the boys toilet to wash his hands. Two months went by, i check the toilet to see if he is using his pads as he has to change, still the soap and stuff has not been used or moved out out of the way. They don't like me going in there as they think i am up to no good. I have to count the pads to make sure our k is telling the truth that he has changed them. Anyway, i hate having to get on at them as this makes me out to be the villain/troublemaker when all i am doing is looking out for my sons welfare. I am stiil upset about our k being blamed for his attitude and that it is down to his attitude that he is not progressing. I think i asked this before on this forum as to whether this is discrimination. We are applying to the tribunal for discrimination and change of school. Our k wants to go elsewhere where they understand him and where he feels safe. He actually said this to me that he would feel safe at this special school because other children are like him. We are both going to the doctors to see if she can back us up as the thought of going back to this school is making both me and him anxious and i know this does not look good. Personally the school senco huffs and puffs at me over things like needing a map of where they were going on a school trip (whipsnade) i said he needed it so he could work out where the loos where and what to expect from the zoo. The attitude of the school is absolutely horrible, the headteacher on ks report said he makes no sense of what he is writing in english and needs to make sense of what he does write and that he needs to be on time for school in order to make progress. The heateacher does not say hello to me in the afternoon when i go to pick him up. My partner goes to drop him off in the mornings so he has not been very late. He gets in at 8.55am on some days other days our k puts up a fight and does not want to go in. Is it really worth the hassle of going back. Can't take much more of this. I really want to scream at people who refuse to listen and judge without thinking about what its like for us. I am not refusing education just WHERE he is being educated as its not supporting his needs. The support in place is not good as they have refused to explain what training has been given to the staff to support our k (all they have is a lunch time assistant/part time assistant. I have tried to get on with the staff and they blank me. I have tried to make friends with the parents but all i get from them 'is your son should not be here'. What should we do and what should be the right next step to take, going to tribunal and discrimination (all we want is a change of school/not money) is going to make attending school worse for our k and me. Any ideas on how to handle these people, i have run out of smiles grins and bearing it. Many thanks, sarni.

Hello everyone, I cannot honestly believe that you do not have to be qualified to be a SNA. Our k is still having trouble on odd days and is now feeling sick at school. This is difficult for me because i think its him being over anxious that is making him sick when events are going on in school that he has not been told about. The statement he has is not in place as its still in draft. They have offered 10 hours and its not one to one, and they have employed a part time teacher who doubles up as a school meals supervisor. This person has recently gone on a course (one day) and now is to be employed as a full time SNA. I am fuming because of all the lies that are being told now to cover the schools position. I emailed the senco and asked a couple of questions like is the SNA going to be full time. I also wanted to know what training courses they have gone on as the senco said two teachers have gone on training for a couple of days. The senco replied and said the following I can confirm there will be a SNA full time. I cannot guarantee that she will be with k one to one but k is one of three children who are statemented. I myself (this is the senco speaking) have had ASD training IN THE PAST and other teachers have have had first hand experience in teaching children with ASD. Rest assured they are more than qualified as they have been here longer than i have. The new SNA is a school meals supervisor and part time teaching assistant and is she is a full time member of staff and recently did some training as a SNA. This senco DID NOT MENTION ANY OF HIS PAST TRAINING WHEN HE ATTENDED THE TRIBUNAL WITH THE LEA. This is why i cannot trust what is being said anymore. Our k has legally one more year at this school. He will be 11 next september. We are stuck. He needs a school with a unit attached but there is none here in this borough until he is 11 as there is only one secondary provision with a unit. Our k plays with a couple of kids and i am worried about moving him again, what do we do, is this a case of tough love where we move him because its what he needs not want he wants. HIs reading is fine not worried about that its his maths and literacy. He refused to go in school the other day and complained of having a headache so he could miss Big Writing, he says no one is giving him help , the school have not given ks school (end of year report) yet all the children have been given theirs. What can we do now, is solicitors the answer ?. We have visited a special school and this would provide him with what he needs but it lacks the social integration and i think k would find it a struggle as he would be the most competent there having said that it would boost his self esteem amazingly as he is telling us and keeps telling us he is the second most dumbest in the class. I have never been so torn over anything like this. Our k is constantly thinking that if his toilet secret is found out he cannot attend the school. What do we do now ?. with regards, sarni.

Hello everyone, I cannot honestly believe that you do not have to be qualified to be a SNA. Our k is still having trouble on odd days and is now feeling sick at school. This is difficult for me because i think its him being over anxious that is making him sick when events are going on in school that he has not been told about. The statement he has is not in place as its still in draft. They have offered 10 hours and its not one to one, and they have employed a part time teacher who doubles up as a school meals supervisor. This person has recently gone on a course (one day) and now is to be employed as a full time SNA. I am fuming because of all the lies that are being told now to cover the schools position. I emailed the senco and asked a couple of questions like is the SNA going to be full time. I also wanted to know what training courses they have gone on as the senco said two teachers have gone on training for a couple of days. The senco replied and said the following I can confirm there will be a SNA full time. I cannot guarantee that she will be with k one to one but k is one of three children who are statemented. I myself (this is the senco speaking) have had ASD training IN THE PAST and other teachers have have had first hand experience in teaching children with ASD. Rest assured they are more than qualified as they have been here longer than i have. The new SNA is a school meals supervisor and part time teaching assistant and is she is a full time member of staff and recently did some training as a SNA. This senco DID NOT MENTION ANY OF HIS PAST TRAINING WHEN HE ATTENDED THE TRIBUNAL WITH THE LEA. This is why i cannot trust what is being said anymore. Our k has legally one more year at this school. He will be 11 next september. We are stuck. He needs a school with a unit attached but there is none here in this borough until he is 11 as there is only one secondary provision with a unit. Our k plays with a couple of kids and i am worried about moving him again, what do we do, is this a case of tough love where we move him because its what he needs not want he wants. HIs reading is fine not worried about that its his maths and literacy. He refused to go in school the other day and complained of having a headache so he could miss Big Writing, he says no one is giving him help , the school have not given ks school (end of year report) yet all the children have been given theirs. What can we do now, is solicitors the answer ?. We have visited a special school and this would provide him with what he needs but it lacks the social integration and i think k would find it a struggle as he would be the most competent there having said that it would boost his self esteem amazingly as he is telling us and keeps telling us he is the second most dumbest in the class. I have never been so torn over anything like this. Our k is constantly thinking that if his toilet secret is found out he cannot attend the school. What do we do now ?. with regards, sarni.

Hello everyone, We have a meeting to discuss the statement and its on the 27th. I have been told by IPSEA that i should ask for a complete statement and not have amendments attached. Please correct me if i am wrong in anything i have been told or if there is anything i have left out. I would be extremely grateful if anyone could give any advice on how to handle this, my emotions are almost at boiling point after one conversation i have had today which i will come to later. Tried ringing IPSEA no joy i will try later. I understand that anything in part 3 of the statement is what the LEA have to put in place. If its in part 6 they are not obliged to. Some provision is in place. I want this put in part 3 that this is what is being met (how do i word things correctly aswell)as i and other people need to know where k has started from and that what may need to be changed. Can i ask for this to be done ?. I can't see them objecting as it shows willingness on their part to help our k. It does need to be in the statement otherwise how can we move on if we don't know what was in place first. How can it be changed to improve for k. Toileting is a problem and k is so reluctant to wipe himself and i have asked for one to one support for this and one to one support for him going on trips so going to the toilet should not be a problem. The SENCO (who says k does not need extra help in this area and one to one is a waste of valuble resources on him. He actually said 'does not see why k should have more help than other children'. How is it a waste trying to teach him to wipe himself, what he does sometimes at home, he needs help with at school. They (school) fail to understand that what a ASD child learns in one place does not transite to another without help. The school are going through a period of change. The advisory teacher for autism has explained that she has been told (verbally) that every class will get a permanent TA, so at the moment k and other children do not have a someone permanently in class for them. It changes on a daily/weekly basis. No wonder k is getting confused. The school failed there ofsted last year and its taking to long to enforce this change and in the meantime k is getting lost in all of it. The school should have things up and running by Sept. Seeing is beleiving. I have been told to hold on and stay with this process for change. I am reluctant to move k again. Should i let him stay, things have not improved with communication with the school. The teachers don't tell me when events are coming up and k gets all anxious and tells me when its too late. The school give me the impression that he is pulling the wool over my eyes, and that he is some naughty school boy trying it on. He had a flair up again of not wanting to go to school again today because of big writing and literacy and that no one is helping (this relates to not having a TA in class i suppose). Do we stick with this school as its been since last july that the school failed there ofsted and really things have little improved. What do we do ?. The teacher k had, has just left due to family concerns and that was about two weeks ago. During this time ks behaviour has not been great and he has been made to WRITE OUT LINES for bad behaviour (he was made to write i must learn how to behave and managed nine lines). Do they STILL DO THIS ? i really thought this was done in my day. I am taking this piece of paperwork to the meeting to show the SENCO and shove this paper in his face and the school teacher when they say he behaves well and not bad at all. All i seem to be getting from the autism officer is 'well the school are improving and they really should do this and that. She is going to give me (autism officer) a plan of action to take with me to the meeting (her plan) she is not able to attend and no one else is going with me (apart from OH other half) and because i am having trouble in printing things out on this computer she is going to give a copy to the SENCO to give to me. REALLY, this man and the school teacher have my phone number my email (k and one other child are the only two children in the school with statements, is it too much to ask to call and leave a message) and still fail to inform when of events changing. (ie sports day). She wants me to trust them with giving me communication.? What to do now ?. Sorry for long winded post. JUST SO FED UP WITH NAGGING. You can see why i am almost at boling point. I need to be structed about this. Being dyspraxic is so xxxxxx annoying. Frigtened of getting muddled and looking an idiot. best wishes sarni

Hello everyone Apologises to everyone, the people involved in running these programmes are Autism Partnership NOT autism uk. If you type in autism partnership you will find a list of workshops that they are running. It looks good. Sorry for the mistake. with regards sarni

Hello everyone, Has anyone been on any workshops that autism uk have run. There is one called the 'The Big Three' Eating, Sleeping and Toileting and this is being held in london on the 13th July. They have ABA approach to managing behaviour. Not sure about this so wanted to try and get some feed back and find out if anyone has experiences of attending these workshops. Its on their website and the lady that is running the group is Donna Benton. If anyone can let me know of their experiences i would be grateful. best wishes sarni

Hello everyone, Sarni here, I am having problems with both the little one, our k and now our eldest D, D is 21 years old. My main question is at the end of this post, sorry if this post is a bit long. D has gone for a job interview today, but its for a stock room assistant position in a new shoe shop where there will be fewer people working closely together. He has worked for sainsburys (resources for autism helped get him this job at sainsburys). He has been doing ok and getting on and has managed really well and i am very proud of him. He does not work too closely with people and does as he is told by his boss. D has been there for 3 years and has now told us in his words " i am so good at my job that i have become lazy". "I want to move on where there is more opportunity to do something else but i cannot manage being a team leader.". I asked D why does he want to leave sainsburys, he says, they won't change his hours. There is no room for me to do anything else, i said have you asked, he says no and anyway he can't learn about cooking in the hot deli section AS I HAVE NOT TAUGHT HIM HOW TO COOK AT HOME. It was at this point of the conversation that i wanted to scream at him, I said to D, they have different rules and hygiene and health and safety standards and they will teach you. Do you want to move onto another section, no he says. Why do you want to go and sell shoes ?," because its longer hours and i get a bit more money and i am doing the same job", (this is the same type of job that he is currently unhappy in and he says its too easy !!!! yet his boss has said on one occasion otherwise ). D says he will miss his friends at sainsburys. (currently D works on produce and stock takes and the job he is applying for is a full time stock room assistant) He will be selling shoes aswell. This may all come to nothing but it appears to be a xxxx job as only thirty people applied, i said to D are you sure it was for the job in total and not 30 people interviewed today ?. No only thirty people applied for the job and it was a group interview and only six people turned up. I said to D " What does that tell you about the job then". D said I believe this shoe company they are a good company and they gave us exercises and tasks to do. I told D, they are hardly going to tell you they are horrible to work for. My question is this, do i get involved ?. D may get another interview or it may come to nothing, do i have a chat with the HR manager as they know about his condition or wait. D does not know when he is well off and this new job, if he gets it is longer hours (which he moans about now even) and the more money he is talking about is a 30pence per hour a bit more than what he is getting now. Don't think he has thought this through and i am very concerned he is leaving a good job with more opportunities and going into a worse job that is restricted socially aswell . Sainsburys have been very good to him. I really think it would be foolish for him to leave now. How do i handle this, has anyone had this type of situation, can anyone please give advise. Please help, Really worried for him. with best wishes sarni.

Hello everyone, Just so angry and upset as the statement our k has now ,implies a lot of 'mother reports' even though they have evidence from hospitals and doctors about constipation and soiling, basically the school have implied if we don't see it, it does not exist. so our k hides and witholds his stools and the overflow soils his underwear but not enough to go through his trousers just his pants. I took him to the doctor last week and k would not let him look (ks bum was sore, equivilant to nappy rash) anyway i managed to get the doctor to look when we all went into the toliet and he saw how ks bottom was. I have tried to get an OT onto this but no joy. I have gone through ks statement and found no mention of any strategies to get him to wipe himself, no referal even to the autism unit to ask about help in getting him to change into his PE clothes and quite frankly they believe its because i have not brought a PE kit in, its been a year since he had his PE kit and he never wore it anyway. I brought in two pairs of plimsolls and he refused to wear them. So i took them home. He was not changing into his PE kit, since i took the PE kit home he has been willing to do PE provided he does not have to change. Recently as last week he refused to go in on Thursday as the teacher last week (he has a different teacher for PE on thursdays) tried to get our k to take his shoes off. If i force k to wear a PE kit he refuses to go in, so what do i do ?. In part 6 of the statement all its says regarding changing of PE kit is this. Strategies to encourage k to engage in Pe and physical activities in school eg social stories good home/school liasion to ensure any anxities k has around changing are recognised and expectations are clear any issues around sensory sensitivites are considered. Good home/school communication eg home school book so that learning can be supported at home and any issues dealt with to reduce k anxieties. (k forgets letters, homework and his diary) He struggles with homework so leaves his book and does need reminding (frequently) to get his book. Apparantly his continued lateness and absences have made an impact on his learning. No kidding, he complains he does not get the help and has even said so to their Educational physcologist and that has been mentioned in the report inclosed in the statement. Its so insulting i really feel like i want to scream and go running to the nearest solictors, i can act on ks behalf and it would not cost anything provided we have proof of our incomings and outgoings. Can anyone advise on how to get a child to wipe himself at school. When we asked him why doesn't he do it he answer is i cannot see my bottom to wipe it. Even though i have told him he has to keep wiping till his mess is gone. Basically they see K as lazy (lacks motivation) and say its his attitude thats the main problem. I could scream. I have phone footage of how k is and they refuse to see (tribunal don' allow video footage. Just because its not a problem for k (he just sits in it) the school think its ok. I am just so angry. This is second time around for us and its so frustrating. I know its not an educational matter but a social matter yet he still needs help in these areas. I want him to stay at mainstream but he needs more support in basic care of himself. Should the school be employing this,even though its not an educational matter, its still support he needs. We have all told k he needs to wipe himself but he won't unless he gets help. The school thinks its k pulling the wool over my eyes and doing this for attention. I can think of other ways rather than putting up with a sore bottom, wouldn't you agree ?. I think this statement is boardering on disrimination of some kind. I never had this problem with the eldest one. Best wishes to you all, thanks for reading. sarni