Viper Report post Posted January 21, 2005 (edited) Hi, I have posted about this before but was told by you good folks that I can get a statement for my son. I spoke to my sons pre school sen co-ordinator and she tells me my son will not get a statement just because he can't use the toilet (phobia). I was told by the head of the school that he can't go to her school in a nappy. He is supposed to start in September and right now he wont have a school to go to, there is no other school that I can get him to. My hubby says we will have to make stuff up at this rate and I am starting to agree. The problem stems from Ben being gifted, no one can see beyond that, it's a case of "if he is bright he will cope" how wrong can they be, I can't envisage Ben coping at all and he will be put off school forever if he ever gets there. What advice have I had? The general view is that if we see an incontinance (SP) nurse the problem can be solved, what a lot of cr*p (excuse the pun) Ben has perfect control of both bladder and bowl he just can't do it sitting on the loo. I feel that I am being classed as some sort of incompetent c*w who can't toilet train a child, well just for the record I have managed it three times so far and even trained the flamming dog. I also think the powers that be think I want to hang on to my "last baby" so I am not trying. Sorry to rant but it is getting me down now and I am really beginning to lose it over this issue, I feel so lost on this one. Viper, feeling relieved that I can rant somewhere. Edited January 21, 2005 by Viper Quote Share this post Link to post Share on other sites
niki Report post Posted January 21, 2005 rant all you like! i know how you feel, these "wondeful? proffesionals? make us all feel incompetant and totally nuerotic! I dont think there are many parents of asd kids that havent had toilet issues in one way or another, stand firm mate keep fighting! Quote Share this post Link to post Share on other sites
elainem Report post Posted January 21, 2005 Hi, sorry you are having such a hard time. have you tried to get some back up/support from Parent Partnership. Is is wees and poos or just poo (sorry) my ds will wee on the loo but not poo. Luckily we have a routine where he poos in a nappy either early am or in bedtime nappy. How old is your ds? My ds was very late to toilet train (about just turned 3) for wees and even now he has a lot of accidents. Your sons pre-school sound very obstructive and unhelpful. When my kids (twins) were starting pre-school I looked into their rights and found it terribly confusing. Its seems b4 statutory school age the school have no obligation to make provision for their addtional needs but they SHOULD - eh?? I use another parenting site too and I am just soooo p*ssed off reading about unhelpful, "in their comfort zone", compacent nursery teachers. We are lucky with ours but I feel despair when I read of others who have such bad luck to come across such lazy ignorant people. Ooops I have a bee in me bonnet tonight. Have you also tried the LEA or Disability Rights Commission. Also try the LEA website they often have loads of info about all the wonderful things they aspire to do, but never tell any of their employees! Elaine Quote Share this post Link to post Share on other sites
Viper Report post Posted January 21, 2005 Hi Elaine My DS is 4yrs and 4 months, he will wee standing up but won't sit on a toilet to poo and the only loo he will wee in is our own, never wee'd in any other loo. on a recent shopping trip he needed to go a wee so I took him, then hubby took him, then I took him again and he physically could not "let go" we had to buy a bag of nappies, and when I went to put it on him he was in pain where he was so busting to go, so I stood him in front of the loo again and he still could not go and was in tears with the pain, as soon as I put that nappy on the flood gates opened. He refuses to go to play school, the sen was sent in to help but it was no good. My ds now attends the school he should be going to, on an introduction thing, where all the kids due to start in September, go for one hour twice a week with a parent, a very good idea but no good if he can't go next September. I will have a look at the organisations you sugest. Thanks Elaine Quote Share this post Link to post Share on other sites
nellie Report post Posted January 21, 2005 Viper, I am really sorry you are still having these problems. Your child can be gifted and have special educational needs. IPSEA say an assessment is necessary whenever it is probable that a child's special educational needs cannot be met by the provision available to their school. ?This is the current position in law and in the Code of Practice. I suggest you telephone IPSEA. Independent Panel for Special Educational Needs. (IPSEA ) SEN Helpline: 0800 018 4016 Website: http://www.ipsea.org.uk Good luck, keep us posted. Nellie. xx Quote Share this post Link to post Share on other sites
Kathryn Report post Posted January 22, 2005 Hi Viper, Just sending lots of <'> <'> Don't give up,altogether, even if you have a rotten couple of days here and there - it's allowed!. Take Nellie's advice, phone IPSEA, they are giving me a lot of advice at the moment in a very difficult situation. The NAS has also been very helpful. Phone them soon and leave a message because they take a few days to get back to you. Listen to the experts and don't take any c**p. People will try to fob you off with all sorts of lies about what you can't get - don't believe them. Stay strong, you will get there, it's worth it, K Quote Share this post Link to post Share on other sites
bid Report post Posted January 22, 2005 (edited) Hi Viper <'> You could try contacting your son's consultant or the people who diagnosed him to back you up with written evidence on this issue. They will be aware that it is nothing to do with you! My AS eldest was clean and dry very young, but my youngest (waiting for Child Development Check) was well over 3 before I got him out of nappies and at coming up for 4 still wears them at night. He just would not do anything on the loo...you can make a child sit there, but there is no way you can make them produce anything! His record was 12 hours without a nappy, refusing to go Then just when I was in despair, he suddenly did it...so there is hope <'> Good luck, and it is not 'you'!! Try and get as much written stuff as possible from his consultant/EP, etc before trying for a statement ...LEAs in my experience only listen to them, not us parents Bid Edited January 22, 2005 by bid Quote Share this post Link to post Share on other sites
Joe's gran Report post Posted January 22, 2005 Hello there Viper So sorry to hear of all the problems you have been having with your little one's school. It is so unfair that if your boy was unable to use to toilet because of anything else but a phobia I am sure the authorities would be bending over backwards to accommodate him. I do hope things get sorted out very soon for you all. Just for the record my oldest son (now 34 and a manager of a huge hotel ) would not use the toilet only his big yellow potty (he is NT!!). We spent the first 4 years of his life with this big yellow potty in a carrier bag where ever we went. Luckily he managed the toilet just before starting school. Obviously your son's problem is more serious and although we are very new to this and can not offer any real practical help be assured that we are thinking of you Love Joe's gran <'> Quote Share this post Link to post Share on other sites
Jericho Report post Posted January 22, 2005 I didn't think schools were allowed to insist on children being toilet-trained as this discriminates against those with SN. The Disability Rights Commission will be able to give you more details about this. When my eldest son was preparing to start school we had a lot of transition meetings with the Area SENCO and the school. The Head was prepared to have him in school while still in nappies. At the time he was 4yrs old and had a phobia about 'big toilets'. After using a Social Story he finally stopped needing nappies in the daytime less than 3 weeks before starting school. He is now 4.5yrs and still wears a nappy at night. Good luck with contacting IPSEA and the DRC. Quote Share this post Link to post Share on other sites
lisa Report post Posted January 22, 2005 Viper, It's disability discrimination, your son has a medical condition which is affecting his toilet training. It also doesn't matter that he's gifted. My son is gifted and has a statement because he has a disability - Asperger's Syndrome. We too were told he would never get a statement because he was too bright. I agree with Bid. Get as much information as you can together before trying for a statement, contact IPSEA and the NAS, contact your MP!! Your child has a right to be educated whether he's toilet trained or not. Lisa Quote Share this post Link to post Share on other sites
Lisajb Report post Posted January 23, 2005 I got that one too, Lisa - "oh you won't get one of those Mrs Britton, he's far too intelligent for that" ROUND OBJECTS!!! Lisa Quote Share this post Link to post Share on other sites
Anastassia Florinevna Report post Posted January 30, 2005 The problem stems from Ben being gifted, no one can see beyond that, it's a case of "if he is bright he will cope" how wrong can they be, I can't envisage Ben coping at all This sounds like a miscommunication. Perhaps you and they have two definitions of "bright" in mind. Quote Share this post Link to post Share on other sites
baileyj Report post Posted January 31, 2005 When I first spoke to Max's nursery before he started to tell them he was autistic, I told them he was not toilet trained, they said that was a problem, I told them they would be discriminating against Max if they refused him, and they immediately said OK, and he now attends, in nappies. They are even now toilet training him by taking him to the loo with the other children so he can get the idea. Stand up to em, they are breaking the law! Jo Quote Share this post Link to post Share on other sites
helenl53 Report post Posted February 1, 2005 Hi Guys, Not sure that this is the correct place to post this info , but as we are talking about toileting- I am on an ASD course and there is a forum and many parents posting about issues other than course work and DLA happened to be one of the subjects. One of the parents of a 5 year old AS child who was dry during the day but incontinent at night was getting Pull Ups paid for. I will do some more research and come back to you - but there must be someone on the forum who has heard of this. Best wishes Helen Quote Share this post Link to post Share on other sites
helenl53 Report post Posted February 1, 2005 Hi Guys I am back again - just found a link that the Lovely Nellie posted on "General Discussion" - "Nappies" That Nellie is a goodie!!!! Best Wishes Helen Quote Share this post Link to post Share on other sites
nellie Report post Posted February 1, 2005 Shucks! Thanks Helen This is the link, thanks Elaine for posting this. Nappies, just looked at a great site http://www.asd-forum.org.uk/forum/index.php?showtopic=1433 Nellie xx Quote Share this post Link to post Share on other sites
helenl53 Report post Posted February 2, 2005 My pleasure Nellie! I will not forget that it is you that I have to thank for my son having his draft statement. I PM'd you and you were kind enough to send me to loads of places to look up the info. I have taken the plunge and named the Independent School at Part 4 and said that I want his place supported and funded. I haven't heard back on that matter. When going through the statement, I noticed that there didn't seem to be any reference to SLT - as his major problem is S&L I felt that this was a rather serious omission !!! They told me that the report was too old to be of any use!!! I did ask them to go to the SL therapist for a report but somehow she got missed. That was Friday - SLT was at the school today!. Someone has given me the whisper that the LEA may allow it to go to Tribunal about my choice of the school - but hey ho - I have come this far. Will let you know how it goes as it was a query way back when from Elefan about a child getting a statement when they attend an Independent School. Best Wishes Helen Quote Share this post Link to post Share on other sites
