joybed

Hi karen you do deserve an award. Hope Ben makes schoool so maybe you can relax . take care.

Glad there is a little bit of light at the end of a long tunnel. i am sure no one was offended as you have been through so much. take care of yourself and your family. Hope everthing back to normal (whatever that is ) soon.

In my opinion from the wording it sounds as if it is 10 hours direct support per week. So yes i think they are fobbing you off. In primary my sons LSA,s were always being told off for giving him more hours not less. I think you need to get this cleared up maybe bring his review forward.

Thankyou all for your replies it means so much to know their are others are in the same situation. The trouble is i am not lucky enough to be able to home educate, I am sure i could gain the skills, knowledge , and patience to do it but practically it does not fit in with our life. I work 30 hours, shift work and often go without sleep as it is, if i am on nights at the weekend and DH is working i am often awake for 40 hours at a time as i get up with the kids at 06.00 and then don,t get to bed till the last one is in bed at 21.30hrs even then he is not asleep and i am listening out till he is. This as you can imagine is damaging my health (not to mention my waist line) and ability to cope with even the minor things in life. however i cannnot afford to give up work we have a large mortgage as well as the usual bills and 3 kids to provide for. Thirdly i suggested to DH that i decrease my hours and he said no as it will make life easier for me but not for him as he will then have to work more hours to compensate for the shortfall. I already have a term time contract and don,t work late shifts in the week so i can be there for the kids in the evening but all the kids hate me going to work before they get up and they hate me being on nights even though they are sleeping. I can see what this is doing to my son but i have no answers as to how to make it easier. I am making enquiries at the moment about an ASD school that sounds fantastic but have virtually been told by the SPED team that we won,t get funding and can,t afford the 8 grand a term so again we have failed him. The only ASD unit in our area have said they cannot meet his needs academically but it is moving to a new site in December so I am not sure whether this will change as apparently it is having links with a mainstream school. Will have to telephone them tomorrow after work. Thanks again for your support.

M who is 12 and has ASD is not coping in mainstream school, I have posted this before but things are getting worse. Initially he had lessons and teachers he liked and would work in and that gave him incentive to go on those days, so we only had tantrums and tears on the days when all his lessons were rubbish (his words not mine). He has now decided school in general is way too stressful for him and he is not coping. Apparently he is not happy that he only gets 30 minutes IT a week and much more of PE. He states that as he is Autistic he should be allowed to do only the subjects he likes and not go to the other lessons. I have tried to explain that the whole purpose of school is to give a good all round education so that you can then decide what area you would like to specialize in but he just doesn,t get it. I have also tried to reason that life has good and bad bits but he doesn,t understand why it has to be like this. He is stressed with the fact he needs to work in groups and is apparently being nasty to the other children he was told to work with to the point he upset another boy the other day. He hates moving from class to class, hates lunchtime, breaktimes too busy not able to tolerate eating with others. He has now decided he will not work at all and to be honest is making our life at home a misery. He won,t do his homework or read and argues about everything. his litttle brother says "he doesn,t want to meet him in this house again" this is after he made them both cry at tea time last night by being thoroughly unpleasant and screaming at them. School have acknowledegd that he isn,t working but don,t seem concerned as apparently he is coping and doesnt appear stressed to them i have tried to explain it all comes out at home but they don,t understand. Last week i telephoned the SENCO and she never returned my call and yesterday i sent a letter to school and have had no acknowledgement Marcus says he handed it in and said i told you it would do no good. The SPED team are involved but are so slow i am going to telephone again this afternoon. I was in his room the other night till 01.00 hrs trying to reason with him come up with suitable solutions I eventually ended the conversation by refusing to discuss it any more as we were going round in circles. He then set his alarm for 05.00 so he could start again, I ended up being late for work as I couldn,t get away from him. The trouble is all suggestions are rejected out of hand. I suggested maybe an ASD unit would work better but despite the fact he says he isn,t coping he says he doesn,t want to leave school and the teachers and states he won,t work wherever i send him to be educated . Do you think if I could get him into a unit he might settle? anyone had experience of a resistant child that finds it does work if you force the issue. He appears to not want to make the suggestions work and in my opinion he appears depressed and anxious all the time. i have been thinking a little about medication but don,t have any experience in this area and wouldnt know who to turn to, he is seeing a psycholgist in family therapy would she be the one to speak to. GP says he doesn,t know enough. I am fearful to leave him alone as says things like my life is not worth living I may as well jump of a bridge and he cuts himself frequently but not with sharp things that i can hide he breaks up plastic anything that will cause harm. I cannot take him to school as i have the other 2 to take to school and have no help as DH is at work so he goes on the bus. I feel i am struggling to cope and am just about holding it together. I have a high pressure job which in some ways is good as it totally takes my mind of everything at home but in other ways just getting there is a challenge some days and i was this close to asking for a sick note the other day only the fact we are short staffed is making me go. I am tired all the time and very short tempered with everyone which really isn,t fair in them. Dh is supportive in some ways but makes unhelpful comments like if he doesn,t want to work don,t stress he will just never achieve anything and remember we have 3 children not just him. Which is totally unfair as i feel i practically run myself ragged to treat every child as an equal. Sorry for the long moan, feels better to get it off my chest.

We had the same problem with M for years he would hold himself for days and refuse the fact he needed a poo until it was too much to hold anymore and he would soil. the volume was so great he couldn,t hide it and it would literally go everywhere. It was written into his staement that his LSA,s would clean him up but it was obvious to all when it had happened as it was very loose also. He was on massive doses of laxatives and still resisted. He got very good at holding it all day but it would come out in his sleep and he wouldn,t wake which meant he needed afull bed clothing change and shower in the early hours. Not good times and so glad they are over. He kind of grew out of it but still takes laxatives and still ocassinally soils but only small amounts and cleans himself up now but he still needs to be encouraged to go to the toilet. We are recently having the same problem with DD she isn,t ASD but has just started school and is extremely shy to the point she talks very little in school and then is very stroppy when she comes home from school so hopefully it is a transitional thing and will settle soon. I am observing at the moment but can see a trip to the GP soon again.

I started my nurse trining 16 years ago and had no training in autism at all never even heard it mentioned whilst working in paediatrics. I currently work as a midwife and again no training given. Most of my colleagues don,t have a clue and some are quite thoughtless when asking about My sons autism. I hear comments all the time such as this womans got special needs followed by a knowing smile and you know normal for this area. I don,t think they are being unkind just using bad humour to get through a stressful day. Some of my colleagues are great and understand why i am so stressed at times but others slag me off behind my back saying i can,t cope and I have even had it said to me that it must be nice to be able to pick and choose my shifts using my son as an excuse, (I have special working hours and a term time contract). It frustrates me that these people are supposed to be in a caring profession and can,t even care for their own staff. I dont want pity just understanding that sometimes life is hard. Probably gone a bit off topic there but thought it might be relevant.

Our son also tries to treat us like dirt and is at times horrible to his brother and sister, refusing to let them sit near him at the table because they are disgusting when they eat apparently the poor little things get so upset and say "we are not disgusting Marcus". The thing is they are good eaters for their age and have better table manners than Marcus. I used to put up with quite a lot of c**p but not any more as it is having such a big impact on Piers and lydia we now send him to his room if he starts. Tonight was a classic example, he was moaning about them eating with him (he didnt like the look of their food but they all had the same) and was trying to dictate where they sat, what they ate etc whilst moaning on and on about school. I told him off tried to encourage the other 2 that they were doing well with there meal and tried to keep Piers from sitting next to Marcus for his own safety. At the end of Ms meal he started to lick his plate I said not to and he continued so i removed his plate at which he lashed out at me and screamed at me and had a major tantrum. The other 2 were so upset so I sent him to his room and he knew i meant it because he went without fuss, he would normally argue. Leaving me to sort the mess he had left and the little ones never did finish their meal. Life is certainly entertaining at times but also very stressful.

Marcus did this once when we were on holiday in scotland when he was 7. We had gone to the toilet block and there was a teenager who was a little on the large side and quite frumpily dressed. Marcus said very loudly "that girl is very fat and what is she wearing". the girl at this point burst into tears and I couldn,t apologise enough. I apologised and explained about Ms ASD while he continued to say "but you always said i had to tell the truth", i nearly kicked him out of the toilets and tried hard to explain but after 5 minutes gave up as he just wasn,t getting it.

It is very common a lot of children on the spectrum also have dyspraxia which is poor coordination. it makes things like PE very difficult. My son won,t do PE at all and has great difficulty riding a bike, doing any kind of sports in fact. Throwing and catching are also a problem and they quite often also drop things, knock things over and are just generally very clumsy. I am sure i have dyspraxia too as i have all these difficulties and hated PE at school.

We were totally honest from day 1 with our son as i felt he needed to know as we had so many apointments where we all sat talking about him i though it wasn,t fair to not let him in on the secret. He accepted it well as we made it all sound very normal. As he is getting older however he is finding it difficult to deal with and as you said he feels that everyones elses way is wrong and he is right on everything this leads to so many discussions i get exhausted. On the whole though it is easier that he knows as we can talk openly about his condition. He aslo hates having autism and needs a great deal of attention to build up his self esteem which at the moment is rock bottom.

I could have written this myself we are in exactly the same position with Marcus very stressed all the time not able to relax. Worries about everything and feels he is failing miserably at everything. School think he is coping as he keeps it all hidden there and to some extent at home too but then it all comes tumbling out at bedtime when we are all tired and all i want to do is get them to bed. Currently exploring relaxation methods myself and have spoken to the NAS this morning who were meant to be emailing a load of stuff which as yet hasn,t come through. will let you know if they come up with anything usefull. Hope this makes sense but Piers is off school ill and is currently trying to destroy the computer. Will think about it and post later.

Don,t think i would have the patience or intelligence for some subjects. Also i couldnt HE due to work commitments. However i don,t think school are meeting my sons needs either and he is so stressed all the time that he isn,t really trying so unlikely to get any GCSEs anyway although definately clever enough.

Most of the self harm appears to be happening at school, in class so he can,t really avoid the situation. He does have LSA support but we all know how sneaky kids can be when it comes to bullying they never let the adults see do they. A lot of the problems are coming from one boy who has ADHD, I have explained to marcus that this boy has special needs too and although it doesn,t excuse his behaviour it has to be taken into account as well. Marcus does understand this but it doesn,t help him to cope. The school are very aware of this issue and i have suggested they are maybe seperated but knowing marcus he probably starts the lesson accepting this boy and then his behaviour gets too much. It is the same at home with his little brother, Marcus initiates a game and then it all gets out of hand Piers gets too boisterous and Marcus doesn,t know how to end it, so it all ends in tears. At home he usually relaxes by going on the computer but he likes to play games and they are not allowed to do this at school. They have a drop in session at lunchtime where the SN kids can escape if they need too but M for some reason isn,t kean on using this. they can also go to the library but not a reader at all. I have suggested finding a quite place to be alone but as he states in a large mainstream school this is difficult. He has very limited interests computers, ipods thats it really so not much to distract him at school. I am not keen on him taking his ipod to school as he would probably lose it and for this reason i doubt he would take it anyway, he wont even take his mobile with him as one was broken once when some boys threw his school bag. this defeats the object of having a mobile as it sits at home by his bed. we have a trampoline won,t use it, won,t ride a bike as he is so unfit and finds it difficult due to his dyspraxia, won,t go out to play as was once bullied at the park so will no longer go. We go swimming once a week which he enjoys but can,t fit in more often than this and also it is quite expensive when you are a family of five. I can see he is bored and frustrated but every activity i suggest is either boring or too babyish. I considered getting a weighted blanket for use at home but they are so expensive and don,t know if he would like it anyway.

All of Take That if i can,t have them all just Jason or howard will do. I doubt i will get them so a peaceful christmas will do

Watched for the first time last night but really enjoyed it. will definatley watch again

Hi this is my second help post of the day but have been considering this for a while and burying my head in the sand i suppose. Ds 2 is 4 started school this september and was always much more difficult than his twin who is female. As a baby he was colicky, lactose intolerant, cried all the time, difficult to feed and very rigid when cuddling him. the only way he would settle was in a sling. Now as a 4 year old he is very loud, boisterous, aggressive and has lots of tantrums. He is difficult to get dressed, runs around when trying to get him to eat a meal, has poor eye contact and is basically a little whirlwind. When i pick him up from school he complains all the way home that his legs hurt and he needs a rest but then when we get in he is just hyper grabbing random items, demanding food unable to wait for tea to be cooked. Fights with his siblings all the time especially marcus. He seems to have great delight in hurting people and will poke and prod peoples faces, hit them over the head with things. If you tell him no he runs of laughing and gets up to more mischief. School have said the only problem they have is they can,t get him to sit still on the carpet, ( he is allways shuffling around all the time) and that he appears to be in another world (when they tell the chuildren to stop doing something he doesn,t and needs telling a few times). Lydia speaks for him a lot of the time although he is capable of speach but can,t say L properly. He would rather have a tantrum than ask for help. He is very demanding and if he doesn,t get undevided atttention he throws a major strop. He sleeps fairly well most of the time sometimes late to settle but is not yet dry at night. If he send him to the naughty step he won,t stay their and i am constantly putting him back on it. Dh hasn,t noticed a problem and school havn,t mentioned ADHD but they have a inexperienced teacher who is newly qualified. Isuppose i have always had doubts about him but now becoming stronger. Could this be ADHD

Hi again my 12 year old was referred to CAMHS a while ago as he was found to be cutting himself with a broken Cd case. At the time i was so shocked i probably handled it innapropriately and cried in front of him as I actually witnessed the cutting and blood etc. At the time he was very upset apologised for upsetting me and promised he wouldn,t do it again. CAMHS were not interested as they said his self harm wasn,t severe enough but they did refer us to family therapy as lots of issues going on. He stuck to his word and didn,t self harm again (well he still bites himself but he always has and don,t think that will ever stop). The other day we were walking to school to get the twins when he just announced very calmly that he had got stressed at school and so had scratched himself with his pencil. At the time i just said "that was a daft thing to do" and concentrated on asking him why he was stressed as i didn,t want to make a big deal about the injury as i don,t to encourage it. This morning he again announced he cut himself as a way of dealing with stress and i calmly tried to explain to him that there must be better ways of dealing with stress than causing damage to yourself. i also tried to explain the risks of infection but he doesn,t care. I looked at his leg and there are obvious marks where he has injured himself. He also breaks things as a way of dealing with stress. Last week he scratched the glass to his bedroom window with a chrystal he had on his windowsill so the window now needs replacing, this is just one of much damage he has caused to our and his own belongings. The trouble is i am totally at a loss as to how he can appropriatley deal with his stress, everything i suggest gets rejected out of hand. The SPED team are involved but not moving very quickly and i don,t want this to escalate into a major issue. Had a really bad morning, the minute I came out of room Marcus started moaning at me about not wanting to go to school, had at least 5 meltdowns over silly things (probably not silly to him i know, but I am only human) . Then i found Lydia had wet the bed again, so have another mountain of washing, then because Piers wasn,t gettting my undevided attention when he asked a question so he too had a massive tantrum just as it was time to leave and i ended up literally dragging him to school kicking and screaming. I really should be doing housework but have been on the computer far too long now and I have also blown my diet as i am stressed. I have been looking through the NAS publications catalogue and found a few books on stress management can anyone recommend any of these. What would we do without this forum.

I too totally agree with this study. i have never had so much sick time as in the last few years. in the past moth alone i have had 2 colds and a throat infection. I also suffer from severe digestive problems and at times depression. I am always tired even after a good nights sleep and have put this down to a combination of stress and the fact i work shifts and am often awake for 36 hours at a time if for instance if i am on nights I will get up to get the kids to school stay up all day all night then get the kids to school and then sleep for 4 1/2 hours no wonder i am tired and ill all tht time.

We have decided this year that we are only buying toys that are good quality and really wanted. I am sick of the plasticky rubbish hanging around my house. you know the kind of thing little playsets with lots of tiny pieces that get lost by christmas day evening and then cannot be played with. All my kids have so many toys that the house is full of junk and I keep tripping up all the time. All needs a damn good sort out but need more time. Marcus only really uses his computer and ipod but his room in full of lego, k,nex, magnetix, microscopes that he has never really used that much. Actually the k,nex was played with for years but he has now lost interest. Time to go in the loft for Piers and Lydia when they are older. I was brought up with the idea that if we didn,t have a massive pile of presents my parents thought they had failed us and I have watched my aunt get into debt year after year spending �1000 on each of her 3 children. Unfortunately i too fell into this trap (not the debt bit though not that daft) and bought Marcus in particular totally innapropriate toys that he had no idea what to do with and so never played with. Marcus wants a DS lite this year and super mario games so he will probably get that and then useful things like stationery for school, socks and a few other bits. Last christmas was really hard as he got nintendo Wii but obviously couldnt play with it christamas day as we had people round, his behaviour was dreadful as he said we were not allowing him time to play and he was bored. i don,t think he truly grasps the concept that he is growing up and doesn,t get toys to play with as such. will need to put more though into this year. He also struggles with the idea that Piers and Lydia appear to get more, he doesn,t understamd that they all have an equal amount spent on them but there things are bigger as thay are still small children.

I am not on my own but was until DS1 was 5. In a way i found it easier to be alone as I had family support (although that had its downfalls) and could make all the parenting decisions on my own. My DH and i have very different parenting skills, he is very strict and i am quite layed back but strict when necessary, this leads to arguments as he feels i am too soft particularly on Marcus who is 12 and has ASD. He is at times unsupportive and has a tendency to let me get on with things and this leads to resentment on my part. Being a single parent especially to a child with ASD is hard and very challenging but we get there in the end and do it because we love our kids. Enid i too have drank lots of red wine and am in the process of trying to cut down although every night i could really use a drink. I got to the point where I would have a drink every night and eventually got as if just drinking one glass would give me a hangover in the morning. This was not great when trying to deal with 3 children so I now limit it to friday or saturday night depending when i am working, although we did share a bottle last night .

This sounds exactly like DS1. He too had been going through the diagnosing process for 2 years with a totally useless clinical spychologist who refused to diagnose. WE moved areas and therefore schools after 2 weeks in reception, and although his previous school where he had also been to nursery acknowledged there was a problem they wouldnt refer to anyone, preferred to have my mum in class full time (cheaper that way i guess). We went to visit his new school and i was totally honest with the headteacher (he wasn,t toilet trained, and was very unruly and uncooperative) I also at this time explained a little about ASD told him thats what i though he had and gave him some leaflets. He started school the following day and by lunchtime the head was on the phone saying they had real concerns and could they please refer to ed psych. This was the end of September and he was diagnosed by December. Our school also put in place support without a statemant (18 hours) and he had full time suport within a week of diagnosis. I also have some concerns about my DS2 although in a totally different way to DS1. Piers is very loud, boisterous, and aggressive at times and finds it almost imposssible to sit still. He does however have a very vivid imagination (although whether some of this is copied from his twin I don,t know). My Mum is convinced he has ADHD and my friend (health visitor) has mentioned Aspergers to me. His private nursery had no problems, but school have already said they have difficulty getting him to sit still on the carpet and that he has difficulty following instructions given out to the class (such as stop drawing for example). I havn,t expressed concern to any professionals yet as DH refuses to believe there is a problem as he doesn,t behave badly for him (I just let the children do as they like apparently). I suppose I have been waiting for schools opinion.

In our area we would go to the special education depeartment i think but the ED officer of the LEA would be the same. We recently had a similar problem where M said his LSA,s hadn,t been coming into class and i spoke to the SENCO who said they had been having a lot of meetings as they had just gone back to school but everything was back to normal now, why don,t they have these meetings after school when they would cause less disruption.

Not sure what to reply here but just wanted to let you know we are still thinking of you. SS are completely useless, i know from work how long it takes them to get their backsides in gear to protect an unborn child. (I am a midwife). I can understand they are stressed and underresoursed (spelling sorry) but this is peoples lifes they are messing up here. You have been forced into going to your MP hope this helps.

Marcus won,t go at school either never has says they are dirty and is worried about being heard etc. He is the same on holiday and has to be cajoled into going. Movicol for us has been a life saver and he doesn,t mind taking it surprisingly. We tried it when he was 4 and he flatly refused to even take a sip but has been on it for 4 years with no problems. He wouldn,t take senna due to the colour I had to sneak that into yoghurt and then glue the lid back down (how devious i was). He happily took lactulose for a while but then got feg up of it and it stopped working for us. We have also used suppositories/ enemas at times though only as a last resort.Hope you get it sorted soon .