sawjd

Hello everyone, I have heard that the tory governement have reviewed their education policies and one of them is to shelve one to one tuition and extra support for smaller groups. I did check this out and went to bbc news and found that this seems the case, if you go to mumsnet or click on bbc news, let me know. Maybe i read this wrong. I really hope its not true but it was on BBC news. with regards sarni

Hello everyone, Just wanted to thank people for the responses to my post yesterday. Not sure i agree with bagdads post as i did mention that the conversations with k and his reasons are strange and if i can't get to the bottom of why it is distressing him and he has difficultly explaining then we are both setting ourselves up for another battle, i wish it was simple as putting your foot down and being consistent. We all have to find what works, i don't think its giving in mentally i think it can depend on how physically strong you are for example, my OH cannot be strong as the stress and energy it takes out of you when you have arguements and constant frustration of explainning and lack of understanding (from both parties) causes the ms he has to flare up. I too am now suffering from regular severe palpitations that i have never suffered before and i have always been under some stress or other, they (the hospital) are to put a monitor on me for 24hours next week and then i have to have a cardio ultrasound. Scan my heart, to be honest it feels like pericarditis which is what my OH has had as the symptoms are similar.We are both around the age of 40 and we physically feel somedays like a 70 year old. These palpitations scare the sxxx out of me as my breath gets taken away and my heart goes ten to the dozen. I have to stop everything that i am doing. Just wanted to make it clear that health complicates consistency and there are sometimes outside/physical factors beyond our control in life which makes things twice as difficult and impossible to be consistent and strong. You can't change something if its beyond your control . Just me coping with some lack of abilities (dyspraxia)is adding to the stress, so i will be in search of stress management courses via gp soon. Just want to see what the hospital say about my heart, (can it be fixed or is it permanently broken only joking now). I will get to replying peoples post as there has been some brilliant advice to my original post. Once again many thanks to your replies and support. I will always be sincerely grateful because i feel i am not alone anymore. Best wishes Sarni

Hope the holidays are not dragging on too much. K seems to be getting a bit more intolerant about going out and wondered if there are any tips or tricks that people know of (ones that we have not used) in trying to coax him out of the house. He is becoming weather dependent,even though we always carry an umbrella)and he insists we carry this. I show him that i put the fold up umbrella in my bag. Today i said to him about meeting daddy from work, and he blatently refused, his reason was ,....'its not summer'. I asked him to explain what he meant and he said its just not a nice day and i don't want to go and see him. I offered his favourite chocolate if he came out with me and he said that was not a good enough reason to go, it wasn't even rainining. He never said anything about the park or playing, he is just happy to run up and down the living room, and today he has been drinking a lot. I am having to increase his dose of movicol and wondered if this could be the reason, as he had a bad day yesterday and i had to keep changing his pants but he has not said anything about his toileting. He is not suffering with the runs and is still constipated. Just wish professionals could hear the stuff we hear, we have wrote down things he says in a diary. If anyone has any ideas about helping him to cope outside the house and also getting him back to school i would be grateful. Sorry but don't have the energy to take on two asd children today. Eldest one has had a day off today and has just sat gaming all day. many thanks sarni

Hello Flutterby, I hope that your mum will accept your request for diagnosis, i think its just going to take her longer. Its difficult i think for both of you and she might be worried about how this may change your relationship even more. I know its important to you to get as much history from her, but is there anyone else in the family that might be able to help ?. Maybe once she sees other family getting involved, she may be accepting and then become more involved. I can relate in some ways with what you are going through. I needed to know about my history, what i was like in school, and i questioned myself, is it my fault now why my children are like this ?. Its no one fault. It took me a long time to learn that. My mum died sometime ago and there was only my sisters to ask,they could not help as they are a lot older than me and at the time, they were at secondary school while i was just going to primary,so they would never have taken notice of me anyway. Both my parents are dead now and there are no remaning relatives other than my sisters. I was diagnosed as being dyspraxic back in 2008. (i definately know my mum was dyspraxic too now) I needed to know because being assessed helped me answer a lot of questions i had. When i was diagnosed it explained a lot of things. There was a reason, an explanation and a better understanding about myself which was and is so important to me. Something i desperately needed to know. I hope this gets resolved for you both. Good luck with the assessment and hope your mum will understand eventually. with best wishes sarni.

Hello everyone, just wanted to say thanks to everyone who responded to the emails regarding family not understanding ASD, D drinking. Sorry can't get round to thank everyone personally but wanted to say since my short time of being on here you have been so helpful to me and my family. Now for the breakthrough.... wait for it.... had a chat with OHs sister (they are teachers)and got acknowledgement from them that K has same/similar traits to that of D. We talked about the statementing process and she asked how it was going and we compared some of Ds history (I have been with this family for 15 years) how K is mild compared to D. It was good, didn't feel so isolated within the family, its not that we go on about it all the time or everytime we are there. I think not talking about it whats going on and keeping this info to ourselves may have helped to begin with, i will explain. How this came about i can't honestly say its either one of two things. It could be (and i know it sounds stupid but) we tried to talk to family before and what i found was if family members don't talk about it or don't want to know then fine do that for some time, then , i think they begin to wonder whats going on when you suddenly not talk so obviously they after some time want to know, and they have to mention the subject. Just keep it short and sweet we found anyway or ,it could be that OH must have had a chat with them and so its probably him that i would have to thank. His words were to me 'its been sorted' although that was partly to do with something else i think this included K . For the sake of our children and family support, we kept trying. This is just the first time now so its early days but this looks promising. Fingers crossed that this is going to be accepted properly at last after two years of trying with the family. Just got to work now on finishing the statement request and lots of photocoping of Ks reports. We are still having problems with K refusing school at the moment as there are issues with bullying in the playground, poor soul, no wonder he is refusing to go. I think i would, if i found i could not do the work then had to put up with being left alone to play and then teased relentlessly for it in the playground. No one wants to play with him,and when they do they tease him so he has been putting up with this kind of treatment aswell as suffering in classroom. Just wanted to post something from us that was positive for a change, as there has been so few and far between occasions to be positive about from us. Once again thanks for all the replies. Hope that sometime soon you all find breakthroughs (fingers crossed) with those families that at the moment are not so understanding and that they in time understand and come to terms with ASD. It can happen. Have a really good weekend everybody,hope the holidays go smoothly for you all, with best wishes sarni.

Hello everyone, Just read on the website about a CAFS referral and despite being given a diagnosis, this type of assessment from the LEA apparantley is needed for them to confirm this (from their side of things) This CAFs referral appears to be more like an investigation (reading the form) as to your child and who he integrates with and what level of family support their is, and does the child socialise well, is he being nutrured emotionally etc etc..... Given the fact that OH family don' like to talk about OH and our eldest with his ASD and my OH ms as and when they need to with us, ie could they help with shopping as OH is fatigued and legs are wobbly,could they help me cut the back garden down.... their answer is give my eldest one the job to do it. He works now....at weekends i hasten to add and during the week, my OH can't do it because of his MS. I am extremely concerned that this would be represented as emotional neglect as we don't get out much because of his ms and leaving K with parents who can't understand Ks condition, not only that K has been told how good his new little cousin (its been six months now!!!!) which is what K gets to hear all the time when i am there (doesn't matter if they wind me up but doing it in front of K is not on) and i have tried explaining this is not good to FIL who seems to be the one doing it most of the time. In other words they don't listen. I am concerned about CAfs and what they interpret, could they do this because of his MS and eldests ASD. Would this be discrimination of disability ?. Its not his fault we can't get out often. Don't want k at risk but families lack of help is making it so. Knowing Haringey and there chance to opt out of paying for support in education i think they would interpret things this way and say its out fault the cirucumstances we are in, and unfortunately my sister being to far away to help us i think they (CAFS) would see it that way.. The assessment would look bad even though i am going to a ASD support group for K now. I can socialise with K and take him out which i do, we have been to the seaside on our own on a few occasions, we have tried to ask the family to come with us, but they do not want to know. There answer is leave K with us and they go nowhere, what sort of a life is that for him. The family won't help with the back garden so K can play out. Knowing part of the reason he likes to go to Nans is she has a lovely back garden, if we did ours he may decide not to go to nans and then she gets to see him. She could come round but criticeses everything, (ie you should not leave shoes on the stairs, so i moved them and then i get you should make room in the hallway its so narrow (moved shoes to hallway), why can't you get your brother in law to help you, same thing when i came out of hospital, why is my son doing things on his own like laying a carpet, why can 't your family help, and i get from my family why can't they help you ?. Sister is much more sympathetic now. Truth is don't become disabled in my experience people drop you.) I am torn really torn over this as i have tried so hard to get along with them all. I said about coming up Saturdays but OH is so fatigued because of work (daren't go on my own anymore) and he can't give that up and saturdays he just does not want to go out and anyway apparently thats her day off as she looks after children in the week. I have done what i can to get them to accept us all, FIL answer to our situation and OHs ms is we all have difficulties but we don't go on about them. Sorry if difficulty is all we have at the moment but to them if life is not perfect its not worth knowing about, then i get accused of not telling them stuff so no one can win. This is what i would be signing up for and letting social services and doctors and consultants into this set up. I would have this assessment done and they would have to put down what they find. The thing is we are happy as we are for the time being, things are being sorted we have a support group for ms and now for ASD. We are happy to potter along, i can't help it if other parents don't want to invite k to their houses, K would like to go but people don't understand him and children shy away as we have witnessed this at the local park where all parents take their kids after school. Can't make children play with K. He is not bad they do play with him in the playground but again his behavious has made kids back off. I have done my best. Not sure what option is left to us, my sister says its difficult and thinks it would be a good idea for us to move up there as the services aren't bad. She is in essex. Most of my cousins have moved away in the sa me area and it would be nice but her husband is not to keen and OH would not like to leave his family here, i think he feels obliged to stay until the inevitable with his parents or himself. He thinks we may need his mums help but when i have said about help before i got told by his sisters that our mum coped on her own with two jobs and raising five kids. What do i do all day. If i don't work, well this is what i do housework and shopping for food that i can carry, being on this computer getting advice, research on how to help two offspirng with the same condition get help, ringing secretaries for doctors for OH, chasing up people, being in for workmen as no neighbours can let them in for me because they work. Paying bills. Just wish the family would listen but like the ' during the war and uncle Albert' speeches they just shut down. I keep quiet and suddenly i am not talking. tough or what. Can anyone help on this type of relationship as i have tried but they don't want to know. Lets just go with my sister, OH has employment in that direction anyway. Best wishes sarni.

Hello shnoing, Thanks for the post. You would think that my other half who has worked with Dvd players would have told me about the codes you mentioned. I showed him your email and he said i know. Thanks anyway. Best Wishes sarni

Hello Samsam, Thanksk for the post. The website called www.modelme. seems very good so i will them another email and order the dvds. Best wishes sarni

Hello everyone, K refused to go to school on Thursday and Friday, he thinks the school are trying to trick him into dressing up for an easter play. They were trying to make him act as as tree. (sarcasm= not sure what social interaction you can learn from being a tree but there you have it.) On Thursday i spoke to the inclusion officer explained everything and photocopied all the reports on K for him, he said he would contact the school and get the SENCO to ring. The SENCO did not ring but i know i am not the only parent with a child with learning difficulties, so i let it go and thought she was busy, and she knows of this problem with K anyway and not dressing up. We have had a good chat about trying to talk to him that he does not have to dress up. The SENCO has asked me to explain this to K. Honestly, i have tried to explain to the SENCO that i have done this but to no avail and its better coming from the SENCO and the school teacher who obviously manages such events for the class. I have spoken to the class teacher about this, i have spoken to the SENCO about this. So when i was left a message from the inclusion officer saying obvioulsy K needs to be in school and then they could explain (what about the days he has been in school could they not explain to K then about plays coming up). The inclusion officer suggested K has a card that the school could give him or i could give him to exclude him from dressing up and that he won't get extreme anxiety (clinging to doors) the night before school. He explained that 'could we show him social stories'?. The school suggested social stories in the first place for everything not just about dressing up. Their attitude is' here is one or two books sorry thats all we have, but take these and teach him.Work with him over summer so he does not fall further back than he is. I did this despite what else i manage at home. K needs visual stuff really as they (the school) know about K and not paying attention to books much. It has been a struggle to get him to read and they know this already as he has had to have guided reading for sometime at playtimes so he has had to miss breaks. Another thing i am not happy about but thats another issue to add to the pot. I know we need another IEP meeting and one is coming up after the inclusion officer has assessed him. He has a diagnosis, but i understand they (LEA) need his (inclusion officer) input. Given all of this background info and fair enough the inclusion officer is new but has been in place for about a month or so. I would have expected better from him than the message he left on friday. His suggestion is could i explain to the class teacher about Ks refusal to dress up and mention using the card. Obviously he needs to be in school for them to do this. (like i said what about the other days they could explain to him. Thursdays and Fridays are the worst as they have school assembly and this is when the classes do their pieces of work or acting, for what ever the subject is for that time of year or what project they are working on. My question = Am I doing the work of the inclusion officer ? ,what the hell does he think we have been, doing of course we have told the teachers already about how he refuses to dress up and why he can't do it. I have told the inclusion officer this already, (what a waste of a phone call for him to suggest something that has already been done and obviously not worked) The man is still on first base and we have already gone on ahead and he knows where we are at. What would you do ? Whats the next step, we need this man on board to get help for K but this is not a good start for further help for K. How can we turn this around? Many thanks, Sarni

Hello everyone, I found an american website called modelme.com that offers help to children who struggle with understanding about why we dress up for plays and things like parties. They have dvds which show social situa tions like fancy dress parties and various other social situations which looks good. Wanted to know if anyone had come across an english equivilant as the american versions won't work on our dvd players. Many thanks, sarni.

Hello Justine, Thanks for the post. I am hoping it can be resovled but i think that they may feel there is too much against us and that i may have too much to cope with as OH has ms.(he is not in a wheelchair though. Its not too much if the family are all supportive. Which is what i have been trying to get them to understand. Don't think OH has the energy or heart to stick up for me. Which is why i mentioned the 15 years of being together, and why i thought it would count for something. We can try talking again but i would rather go with your suggestion that we remian civil as i think i have lost what respect i did have for her. She wants to hog the limelight with her baby who is now i think six months old, fine. (sorry its just the way she acts, first time baby but she is the only one who has had one if you know what i mean) Something worried me the other day, (sorry if its going off topic) but K told me and OH that we love her baby more than him. wow what a statemnet out of the blue. We were not talking about her baby, but when we visit FIL likes to talk about her baby a lot and how good he is in front of K at times. Can't really talk to him to make him understand that this is not good for K. I just get the impression that we are all not really wanted anymore, fine by me but before K was diagnosed they just wanted K and not D or me. Never offer to go out with us, not even once in the last two years. She (MIL) has been helpful when i have rang in the past about getting food shopping and she has offered to pick us up but i would have really like to go out with her and my son but she just does not want to know. Everytime i try to talk to her, there is not much of a conversation with her. Not so bad when we are at her home, but i do get 'you go out and we will have K'. Before i made the effort to take him up there after school and we would visist a least once a week, FIL makes a point of saying expect we will see you next easter in a joking manner when i know he is really trying to say 'why dont you bring him up more often'. MIL suggested i take K out to after school club to get rid of energy, which is late after school,so now visists are minimum. I got the blame for this. Thats all stopped as i got the blame for not taking him up there anymore to visit when in fact a majority of the time its OH ms that makes him feel fatigued, it will be even more difficult now. We got accused of using them for just being child minders/babysitters even though this was a joke, i felt bad as the saying goes many a true word said in jest,and i haved heard how they like to drop hints when something is really wrong instead of coming out with what they want to say. With all this going on before the drinking incident how can things ever be truly repaired. I guess i will just have to wait and see. Best wishes, thanks for reading. love sandra

Hello Fiorelli, Just to clarify a few points, I did check my original message and i did put in that D does work and that his colleagues left him on his own, someone who is vulnerable when they are on their own is not right and before he went out i spoke to the guy who said he would keep an eye on him, he didn't. He did not contact me to say that D is on his own and could i go and get him. The guy had to leave as he had work the next day. Lucky D was found otherwise i would be arranging a funeral. Secondly, i am getting fed up with having to explain with the SIL. Its her that is making a big thing about 3 times in a year and then she said she had, had enough, she ought to try living with his demands. I have checked that because D works £50 is enough. Online gaming battles is expensive. Thirdly, When i tried to speak to SIL about when she came out of hospital, i said one line of text on his phone would have been enough. Also SIL and BIL had nanny running around and his sisters running around helping. So they had plenty of help but just cut D off. SIL and BIL was told before the birth about D and how he would like to be there, they told me to joke to him they were having the baby in scotland, i said i know it was strange but he would like to be involved somehow. They just laughed it off. D thought that he was a part of this family, they think otherwise, i have had on and off heated discussions about D and how they tease him. I have had it in part with my family, they know better now. Where D works there is a girl he likes and he told me they (staff) are making sure that he works the same shift as this girl, Ds words were to me they are making me work with her, by chance the other day, i mentioned this to his boss, and she told me HE is asking for same hours as her. I can see this may develop into him watching her every move while she is at work and who she speaks to. Which is why i urged caution. Yes i can see its perfectly normal to ask 18 years olds, but D needs to do it off of his own back and not because he thinks people are pressuring him. He is not totally like other 18year olds which is what i was trying to explain to her and her arguement is he is, which is insulting, i have explained his history and showed reports, does that mean all the consultants were wrong aswell, all the teachers in his schools, hospitals etc. I know children develop over time but this condition will be with him always as thats what they told me. We obviously see what he is like at home and the things he does, but just because they don't see it (they don't see him often enough)doesn't mean it don't happen. (i am thinking of tree falling over in the forest and does it still make a sound, just because you are not there doesnt mean it don't happen). It really is very insulting of her to suggest after the struggle we have had that D is ok and its me making him like it. K his brother has been diagnosed aswell and the school want 8 hours of support for him, wonder what she will say to that. Nothing to do with me this time pushing for help, the school noticed it and brought it to our attention. So its not me going mad or over protective. Sorry but one last thing, he did get drunk before at a friends party which is what i also put and thought he learnt his lesson then. My concern is the anxiety he feels holding conversation with people may make him drink more as SIL and FIL has said its ok to get drunk now and again. No its not, On D birthday (18th), he got tipsy and she called him 'screaming like a little ######'(he was yelling a bit). I have told her D tells me everything but she obvioulsy has not learnt. Neither has D however it is a good thing that he is writing down questions like, whats your favourite film, whats your favourite colour etc. Maybe she has finally learnt her lesson as she has said for me and D not to call her anymore, funny that , we told her not to respond to his texts ages ago before the drink incident. I can admit i am still learning about D, some people never will. I think with d its getting to understand the consequences somehow. At least we are going to get further help for him. Thanks for your post. Best wishes sarni.

Hello sawjd (sarni) Please can someone tell me if you think i am being unreasonable or better still how to manage D with personal information. D is 18 years old and has mild ASD. The family (my Other halfs family) acknowlege this but don't really want to understand. D has problems of communication at some levels. I have found a page of questions on how to start a conversation to a girl which to me would come naturally to any 18 year old without ASD. Throughout school i have done my best to try and get him to learn from his mistakes, make things easier for him to understand, getting him to manage things by himself. He does have a job at our local sainsburys ( i managed to get him an interview and the company prospects, who deal with learning difficulties, attended the interview with him). He had trouble doing cvs and kept handing them into all the shops he wanted to work in, just because i happened to mention its great when you have job that you are interested in. He took my word and just did cvs for the shops he liked and when they said they would get back to him he believed them, even though they did not have any vacancies. Anyway....we have tried to explain to members of the OHs family that D has difficulty in understanding things at times. OH has a sister in law (even though they are not married OH keeps reminding me, even though i say it doesn't matter) and she has on three occasions poked her nose into private affairs within the last year regarding teaching our son. I am really getting fed up with it. I have tried to explain to her that D takes things litrally. He had a really good relationship with my OH brother, then he met this woman, and he had a good relationship still but D noticed that he could not talk as often to OH brother (brother never there always out with this girl,) then they had a baby, D kicked off big time as he was (along with me and my OH not invited to go up to the hospital) yet the new gran was and OH sisters got to see new baby. D was deeply upset and kicked off right in my face, kept screaming at me why weren't we allowed to go. D had the impression he was going to be there at the birth as everyone was so excited about her going in to have baby. I believed they would have at least told him what was what and why he was not meant to be there, i do try and tell him these things but he does not believe me and then people like OH brother and his partner get cross and say why don't i explain, PLEASE EXCUSE THE CAPS BUT WHAT THE HELL DO THEY THINK I HAVE BEEN TRYING TO DO. Anyway i was upset and said to them when we did get to see them two weeks later, why did they not send a small text to say when they come out they will see us?. Apparently she got annoyed with me and said 'excuse me i was having a baby and dealing with new stuff' (joke= i did not know it takes two weeks to have a baby)anyway i expected OH brother to text D and explain. They just dumped him. Second time she put her foot in it she was asking him about girlfriends and did he have a girlfriend by now, D now thinks to himself,because i am 18 and they have mentioned i should have a girlfriend by now i have to have a girlfriend, hence the page of questions on how to start a conversation, D has only just spent his first year getting to grips with working, this is the first job he has ever had. Dear god i have tried to explain about not implying such things as he takes it literally,why can't she get the message. Third time, she put her foot in it, now this time she really overstepped the mark, we have said to D in order to make him understand about paying his way he should pay towards the cost of living, its a contribution, he tells everyone he is paying rent, we have reminded him that its a CONTRIBUTION. We set the record straight on that one, it is a minimal amount compared to what other people ask, as council tax has gone up we asked for a bit more, next thing i know we got told by D that she has said to him 'ask your parents why its so high'. (£50) This covers everything even the gaming battles on line. What the hell has it got to do with her. We our his parents do they really think we would rob our own son its disgusting. We have told D to stand up for himself and given him chance to do so but he does nothing so i have to intervene because we keep getting this grief from him because of what family are saying to him, i think they know this and are trying to split us up, as this keeps happening. OH has said to her don't bother to text him or call him about such stuff as he does not understand. OH sisters understand now as they made the mistake of telling D i could go to prison for not getting little one into school quick enough, He thought the police were coming round the same day to take me away. Finally the nail in the coffin..... the disgusting text......On friday just gone, D went out for a drink to try and socialise with a few collegues who know about his condition ( at least i thought they did) they left him alone and he got so drunk he became unconcious, trapped behind a toilet door the security guard had to break it to get to D and got an ambulance and he then got taken to hospital, luckily he had his phone on him otherwise i would have been none the wiser. I trusted him, silly me as he got drunk once before but we got him home. I thought he did actually learnt something from it, as he went for another drink with work colleagues and was ok and came back at a reasonable hour as they gave him a lift, this time they left him alone anything could have happened. D texted people from hospital instead of me, i had to ring him, i asked him why did he text people( i asked him this a few days later when i think it sunk in) he said ' i wanted to see if anyone cared'. Do you think he did understand in the end?. I had to go through his phone to find out what happened, he got messages of 'are you alright' what happened' etc. The next day he got a message from his aunt..... this woman has not long had a baby and is 28years old, they own their home (soon) and she drives, i thought she was responsible . Her text reads ' heard you went to a gay bar and got done up the xxxx is that y u ended up in hospital ?. I explained to D that maybe she did send it as a joke but even so it was not funny. He sent her a text saying it is not funny. I did not know he did this, so i tried to speak to her but couldn't and left a message saying ' D told me the text you sent (which he did) him and to be honest i thought better of you'. I got this call back from her saying i was patronising and how dare i speak to her like that i am not her mother. She also briefly apologised but said she was sick of it and she was angry at me as it was meant as a joke and should know she is not a nasty person. I RARELY SEE HER OR SPEAK TO HER SO HOW CAN I KNOW HER THAT WELL. Also i got from her that all 18 year olds go out and get legless and her son will do it, I could not believe what i was hearing. I have been with my OH (and his family)for 15 years and have two children. I am 40 years old. There is no respect from this woman at all. We keep having this trouble on and off with D giving us feedback about what is said and we ask have you got this right ?. Definately right about her interfering with his contribution, and it being none of her business. I know that to be true. Should i just keep out in future, i did explain to D that i don't expect the whole world to change but i expect the family (which i thought she was)to understand or a least be a bit more tolerant. How do i handle this type of situation, i will speak to be civil but if she blanks me in our company (Nans birthday next week)OH does not know what to do. It could kick off again. Any suggestions, ( i have tried giving them leaflets, you think the sister would know aswell as they are school teachers and come across children like our K who is mild ASD (possible SID). Please help, many thanks sarni.

Hello Jsmum, Many thanks for the links. I will look into it. love sawjd

Hello everyone, We had such a brilliant day yesterday and now today its all gone wrong again. Just need to explain that K is seven years old. My main question what do i do. Are there any strategies for getting his trust as the school do not undertand about SID?. The school are worried that i am keeping him off. I am not, he does not want to go in and does not trust me to take him in because he said they will try and trick me in to wearing something for the school play at easter. K yesterday put his coat on, put his shoes on by himself and walked out the door, today i can't even get his trousers on to get him out the house as he says he doesn't want to dress up and the school are going to make him. I do not want to keep him off and have talked to him about why does he not want to dress up and he says 'i can't stand getting dressed and undressed'. (he has privately been assesed for SID but now confirmed under the title ASD at child development centre) We had this problem in PE and we had tears in school about him not wanting to do PE. He hates it. He still does not like the dressing and undressing and does not like exercise but loves skipping and running. Very energetic boy, even now he is running up and down the living room. He does do PE but this is difficult even for him. He is behind with litracy, has a few problems with shoving kids in the playground (him shoving kids) but is a genius at maths. Art he does not like as his drawings are immature and his grip is immature for his age. I caught him colouring in circles and turning the page instead of adjusting his finger grip on a piece of homework. School want a statement but want to do this via a CAFs referrral i want to do this via parent referral with reports from outside agencies who actually agree with the school on what recommendations should be in place. For example OT help for K but the school have said they can't even get funding for OT for a child with down syndrome. The school want 8 hours support but have not specified how they want this to be delivered, they have just said for what subjects he finds difficult. Their main areas of concern are concentration, language and attention. They sometimes keep him in break times (to my knowledge) for not finishing the work on time. This is really unfair as its not his fault. He cannot express himself in words on paper, cannot write proper stories manages a few sentences, he can read ok as he has shown me when we are out and about. I always praise him for this as i think its really good. The reports states he flutucates, when he understands something he is up and runnning when he can't do something he shuts down even after trying. His memory is not great at times, and struggles to think about concepts. He has a mild hearing loss (to do with air pressure in ears). The SENCO words were (in a letter of support for our parent referral) K is adequately supported in school but would benefit from further support. My words are K is just being managed on two hours support at the moment and in order to try and achvieve average ability in line with otehr pupils, he would be better managed on 8 hours of support. I really don't think the SENCO is aware how bad Haringey is in dishing out support and the inclusion officer for autism has said this to me its really difficult and you have to be extreme to get a statement. I think i said before on here why i don't like or agree to this system of CAFs referrals and the inclusion officer said he was not sure about it and he said its just streamlining all teh services together to get a better picture. I don't want Hariingey Social Services 'getting a better picture'. The first son was diagnosed as being on the autsitc spectrum and Social Services dropped me like a hot brick when they found out. They tried to make out i was a bad mother, but its a long story and involves a ex so i want to bury the past. The reason i am hesitant about Social getting involved as in my experience when i asked for help from them it was more of a hindrance than help. They offered help that they thought i should have not practical help that was needed. I went to them voluntarily expecting help and i got probed mentally over and over again. This time OH suffers with ms (exsiting partner of 15 years) and its already stressful with the people we have involved without adding more to the situtation. I worked for this council years ago and believe me not much has changed, despite what is in the recent press i remain cyncial. I will exhaust every avenue of support or help before i ever ask them again. Thankfully there is a lot out there now compared to then but its just accessing this help. With your support and advice i can cope. Everybody has been so helpful, its been great. K definately has some form of SID (sensory integration disorder). He can't stand crisps. Has problems in his bowels although that is being (fingers crossed) resolved. Complained of piano in class being too loud so the teacher said he could sit back and since then we have had no problems. Does say that aeroplanes are noisy and why can't they go away, but he does not scream at them, he used to on occasions put his hands over his ears, we put it down to glue ear and infections. He sits close to the tv, we thought it was his eyesight or his hearng both checked out fine apart from a few problems with ears but he still sits close. Yesterday while walking home, he said he could not move because the rain was stopping him (he walked very slowly so we got soaked).This has happened before at this after school club he goes to. They had real trouble in trying to get him to move himself. Any strategies on helping our little guy would be greatly appreciated. An IEP is coming up soon and i need to get my act together with this parent referral. Its been a long time since i have done one. Can anyone remind me of any useful tips on how to do this referral and has anything changed, does this vary from borough to borough. Any advice or suggestions, i have been in touch with IPSEA but only briefly i might try them again but if there is anything else i could learn from yourselves i would be extremely grateful. Many thanks to you all. Sorry for the long post. love sawjd

Hello everyone just wanted to post a thank you to all the replies about movicol and ways in which to get K to drink it. We found that what has worked for us is the drink schloer and he can drink it and not taste the movicol. The grape and cranberry schoer works as its a bit fizzy but he loves the taste and cannot detect the powder taste at all. Just wanted to let people know as this may help some. thanks love sandra, (unfortunately got a new post for a new problem, but its educational so its under there) <'> .

Hello gem gems, Sorry but i am still getting used to this site but if i shoud post twice the same thing could you let me know and i will try and work out what i am doing wrong. I also meant to say in my last post that i still find it difficult with our sons and have to remind myself that its not an attitude they have, its not them doing this delibrately, its just the way they are. I have to keep reminding myself but its so difficult with people who annoy the hell out of me by saying all children do that or my son is like taht and they will grow out of it. The difference is to me they adapt they do not grow out of it. I understand this but when it comes to personally trying to change my language and how i use it with them, i really really struggle and feel i am no better than the people who do not understand. I wish there was some courses or dvds on how to learn to stop yourself and try to adapt use of language. Hopefully there will be something on this site. Haven't had a proper chance to look today and the eldest is due back at one from college. OH has said to me prepare yourself for round two of an arguement we (both me and eldest) had this morning about going out tonight and who is he with and why i need to know where he is. He is not telling me because he doesn't understand why i need to know and not becuase he is being stroppy, i know this but can't help feeling worried. Sorry for the rambling. Best wishes love sandra

Hello Justine Thanks for the post, i am slowly getting the hang of where every thing is on this forum. I mentioned about movicol to the doctor and found there is a chocolate flavoured one but only the over 12 year olds can have it. Now the doctor mentioned about putting it in a chocolate milkshake, i thought (like you) that milk is not good for bowel problems. I have kept him off it for over a year now as he craved it a lot of the time. I will try squash. Not keen on giving fizzy drinks but if it means he will drink it i can't argue. Thanks for the advice. best wishes love sandra

Hello, Thanks for the welcome. I love cross stitching too. I do have trouble typing emails as i have dyslexic/dyspraxia. Best wishes sandra