joybed

Got the letter this morning and i am so relieved . We were told by the headteacher to expect no more than 8 hours support but he has been given 12.5 and a whole list of other things that school have to do including close supervision at lunch time to encourage his social skills nad keep him safe at breaktimes etc. Another boy in the school has only been given 5 hours so I am pleasantly surprised. How long is it before the support is usually in place, school already have a LSA lined up for him is it immediate, will i need to make an appointment to discuss how the support will be provided. It all seems so long ago since i went through this with Marcus and I really cant remember.

Sorry things are so bad at the moment. I can,t really give any concrete help I,m afraid but just wanted you to know I had read and understand what you are going through. we are having similar problems with my Ds (13) in a mainstream school and although there are appropriate schools the LEA won,t fund saying that M is too high functioning and can achieve in mainstream, however he is falling further behind daily and I feel time is running out. Try contacting IPSEA and parent partnership as they were very supportive to us last year to us and may be able to give some advice. My son would also have lost it had they just turned of the computer, they obviously have little understanding of ASD. I would also be upset if one of my children had been restrained in this manner and can understand why he hasn,t gone to school today. Hope others can help more, thinking of you <'> <'> <'>

Hi and welcome I am joy mum to Marcus 13 who has ASD and twins Piers and Lydia 5 Piers also has ASD. Piers was lactose intolerant as a baby and can still only tolerate small amounts of dairy in his diet and occasionally has episodes of diarrhoea if he has too much and stomach cramps, he was on SMA lactose free as a baby. Marcus was GF/CF for about a year and we also saw benefits but he spends time with his grandparents and they found it too difficult this led to lots of problems so we switched back. As a baby marcus had severe colic and has been on laxatives since he was 2 for chronic constipation and soiling, he will be on these for life. Lydia also suffers with cycles of chronic constipation and then offensive diarrhoea so i am sure she has some intolerance as well. I myself have had IBS for years as well as other health problems and have been diagnosed with a dairy, egg, gluten, white fish and cashew nut intolerance and after stopping these feel better than i have in years and have lost 17lbs as well. Good luck with the diet.

Marcus ASD was born at 41 weeks, spontaneous labour and normal delivery but pushing for 2 hours 40 minutes,he weighed 9lb 7oz, however born in good condition and no neonatal problems. Piers ASD possible ADHD was born at 38 weeks and 5 days induced due to a twin pregnancy. Fairly rapid normal delivery following one prostin pessary, membrane rupture and syntocinon infusion, weighed 7lb 4 oz no neonatal problems. Lydia NT ( twin number 2) vaginal breech delivery in theatre 26 minutes after her brother weighed 7lb no neonatal problems. All initially breastfed both boys had severe colic and Piers was lactose intolerant. I am a midwife and we routinely induce our post dates babies at 42 weeks this is in line with the NICE guidelines and is to prevent placental insufficiency and decrease the amount of unnecesary caesarian sections, indeed our section rate has significantly dropped since implementing theses guidelines which has to be a good thing for everyone. However i believe before these guidelines hospitals were free to set their own guidelines, we previously induced at 40 plus 10 days. Incedently you can make a claim against the NHS up to the childs 21st birthday if you feel you were mistreated. Hope this info helps.

Thanks for your replies. Piers has yet has no statement but yesterday we recieved his IEP one of the targets is to encourage his social skills and teach him to keep his hands and body to himself (he tends to swing on people and invades their personal space) the people to help with this are clss teacher and the 2 TAs who are in the class with them. The school have already lined up an LSA for when his hours come through and she is curretntly attending the early bird plus course with me she also works as a midday supervisor so knows Piers already. It was mentioned in his IEP that Piers was scared of the other children in his class when asked about this last night he said he didn,t know them and they were strangers to him and he didn,t know there names. We spent the next 30 minutes running through all the names of children he did know. Educationally he is doing a little better this year probably because it is a repeat of what he did last year and is more keen to do his key words etc at home. As far as his height /weight goes his paediatrician has no concerns he is on the 25th centile but was on the 75th at birth and until 4 years old he has grown very little in the past couple of years, I am observing and will bring it up again if any concerns. Incedently although the paediatrician said he has no concerns he did say that if he gave a diagnosis of ADHD he would be reluctant to prescribe ritalin due to his size so a bit contradictory. I myself have multiple food intolerances and my mum and niece have food allergies. Piers as a baby until 3 was lactose intolerant, I was going to go gluten and casein free with Piers as i am anyway but DH isn,t keen to try as he says it is restricting his diet too much but may give it a go at some point. His older brother went to this school and we had only one incedent of bullying and this was quickly dealt with, Marcus is much more socially withdrawn than Piers and yet the kids went out of there way to make him feel included and still do but that class on the whole was full of exceptionally caring and considerate kids. The school has a fairly new head teacher and he is not as on the ball as the last one I have been told by Piers teacher that he has advised her not to implement any of the suggestions by the ASD team as they don,t work, I am understandably angry about this but am keeping the info stored for later use. He appears a little happier at the moment and is happily going to school but am keeping an eye on him.

Just to make you all aware if you have a child that chews things don,t buy these. We have had 2 incedents with them. The first was a chunky glowstick bought from a well known supermarket, Piers chewed it and ingested some when i read the packet it said toxic and contains shards of glass we eneded up with a 6 hour admission to hospital for admission. The second was on Saturday we went to my friends daughters birthday party and she gave them glowing bracelets again Piers chewed it and emptied the contents into his eye thankfully said on the packet (after a panicked phone call to friend) that it wouldn,t do any damage but he cried for ages after and his eye was very red the day after. Just thought this may save a christmas of pain.

Piers is currently repeating reception and in his class there is him with a diagnosis of aspergers and another child with ASD. Neither of them have a statement as yet. The teacher is in her 2nd year of teaching and is pretty good but as yet doesn,t have much of a clue and she told me the other day that the headteacher had commented to her not to even bother implementing any of the ASD teams recommendations as they don,t work in mainstream school. I told her I know they do as they worked very well with Marcus and am pretty cross by this negative attitude. In general though the school are pretty understanding having 12 children with a diagnosis of ASD in the whole school, 1 with an anxiety disorder, 2 with ADHD and 1 child with downs syndrome. The main problem we have is that Piers is a very boistrous child who is being assessed for ADHD as well and the other ASD child is very quiet and withdrawn who hates to be touched, not a good combination. My oldest boy is in a class with someone with ADHD and they clash terrribly Marcus really cannot cope with his behaviour and the noise and chaos that comes when he is around. He is the same with Piers also and the 2 have to be kept seperated for everyones sanity not always easy but a neccesity.

Hi all some of you will remember we had problems with Marcus in year 8 which led to self harm, school refusal and a period of flexi schooling. School initially refused to accept their was a problem and were saying he was fine at school and were trying to make out it was a home problem but after getting the ASD team and parent partnership involved they listened and the LEA increased his support to 25 hours. He wobbled again a bit at the end of year 8 when choosing options but that was easily sorted and he settled again. At this time he started pulling out his hair at the roots and sometimes eating it which was spotted by school and brought to my attention (it was under the hairline of longish hair so i hadn,t noticed) over the holidays this continued and he has large bald patches. He returned to school and seemed happy with his timetable but on the second day their was an incedent of bullying and because Marcus responded in a way that was deemed innapropriate he was punished for it. The incedents of bullying have continued which i have reported to school and they say because most of it is happening on the service bus they can,t do anything other than tell the kids off. Since returning to school he has had much less homework than before which strikes me as odd as he has just started his 3 year GCSE course. Tonight however he did have homework Maths which is normally his strong subject and he really struggled saying he is so stressed he can,t concentrate and he had a massive meltdown and sat their eating his clothing (a real indicator of stress for him). He says he is finding it difficult to even cope in ICT which he is a whizz at and really loves. He also says he isn,t getting as much LSA time as is stated in his statement. Yesterday I looked around our local ASD school and the head said he is probably too bright for them, the school that has offered him a place the LEA won,t fund. The head at the school yesterday suggested another mainstream comp which has an ASD unit and has a good reputation which isn,t too far from us, however despite all the problems Marcus doesn,t want to change schools saying he doesn,t like change and would prefer to be unhappy at his current school than have to put up with change . I can,t get it through to him that he will eventually be more settled. HE is once again becoming violent, having very vocal and destructive tantrums which is obviously upsetting my other children. He is remorsefull after an icedent but has hit me twice in the last week, DH as usual is less than supportive and just tells me he will never be happy or achieve anything so to leave him to it, as you can imagine this is causing problems between us too. Any ideas, i am going to speak to the ASD team tomorrow to see if they can get to the bottom of the amount of support he is or isn,t getting and have written a letter to school regarding homework tonight. I think i will go and look around the other school then at least I will have an idea what it is like. Sorry once again for the long moan just as you think things are OK the boat rocks again (story of my life ).

I would be happy to answer questions too about my two boys.

Spoke to class teacher this morning and she was very upset this is still occuring. she said both her and the boys involved year teacher have had a word with them on 2 different occasions, she is now going to the head teacher. All staff members have been alerted to the problem and are now watching Piers very closely for any problems. His teacher is looking into a programme to help teach Piers social skills and how to play with children appropriately. i felt i was taken seriously and have a fly on the wall in the form of Lydia who is also keeping a watchful eye on her big brother (he is 26 minutes older). Thankyou again it has helped to talk this through as DH refuses to talk about it as he is really struggling with the whole ASD diagnosis.

I have recently had food intolerance testing performed, apparently when you are intolerant to a food you produce IGG antibodies instead of the IGA a classic allergy would release. I did the test because I have little health worries most of my life, IBS, migraines, recurrent thrush, oesophagitis, iron deficiency, unexplained vomiting, severe constipation etc etc. My tests showed i was intolerant to eggs, cows milk, gluten, cashew nuts and white fish all things i love and eat frequently, as well as being mildly intolerant to other things that i have to reduce my intake of such as beef, corn yeast to name a few. Since friday i have been free of all the above and am still at the stage of feeling pretty rough but know i will get through it. I sat and cried the other night because i really wanted a cup of tea with milk in it but am now used to drinking it black (thanks Dad for telling me to make it weaker than usual). Have just had a discussion with my DH who thinks my new diet is too restrictive and have had to spend an hour reassuring him i am meeting all my nutritional requirements. Hopefully i will feel better soon. Marcus was gluten/ casein free for about a year and coped very well on the diet but his grandmother wouldn,t stick to the diet so he was constantly getting a hit of gluten/ casein. We abandoned it in the end as it was too confusing for him as to why nanna was more layed back than we were. I tried goats milk but was told by my nutritionist that it is very similar to cows milk so that too should be avoided, the trouble is i don,t really like any of the alternatives and am a little worried about calcium deficiency especially as i am nearer 40 than 30. i can tolerate soya yoghurt so will have to eat loads of them. DH is as we speak at the supermarket looking out milk alternatives for me to try.

Thanks all for your replies. School are aware of the issues and they brought it to my attention first saying the name calling was going on and that it would not be tolerated. Piers teacher has only been qualified a year but is very keen, eager to learn and fantastic with Piers, her and the year one class teacher are working together to sort this out. I will speak to her tomorrow and make her aware of the continuing situation. The main boy in question has known Piers for many years they used to go to private nursery together and before that i used to walk to baby clinic with his Mum. They got on really well at nursery but i suspect he likes to be popular and likes to look really cool in front of his mates. The other boys have all been friends with Piers but are being very much influenced by this other boy. Until about may Piers on occasions went to this boys house his mum knew of Piers difficulties and was happy to have him there said he always behaved but since his official diagnosis in june the bullying has started and this mum crosses the road to avoid me (Iwonder if she thinks it is catching). I am well aware how odd some of Piers behaviours are and he is a very boistrous aggressive little boy but he is my little boy and I love him warts and all as they say. He is also very immature and small for his age only measures 101cm in age 3 clothes and is literally skin and bone. He is the smallest in his reception class and he is a full year ahead of some of them. This makes him a prime target for the bullies however he is strong and I am concerned that one day he will flatten them and then land himself in trouble. His big brother also attended this school and we had no incedents of bullying at all with him quite the opposite in fact. The school have a good reputation for zero tolerance on bullying . He is already struggling at school and I don,t want this to knock his confidence as he is already saying he is stupid. My oldest boy was really happy at school until he went to comprehensive and it has been awful since then I can,t bear the thought of Piers being unhappy this early in his school life. I suppose I have taken it so badly as i was bullied at school and know how it feels. We are just undergoing all the assessments for a statement so hopefully this will be in place soon. The educational psychologist witnessed and commented upon a child not allowing Piers to play in her report she stated it was difficult to see what Piers did to alienate the other children. I see it first hand at home the way he is with Lydia and often Marcus too so I can see that his behaviour may not make him popular but this is no excuse for downright bullying.

Hi I have a 5 year old son who was diagnosed with asperger syndrome in June. He has always had difficulty at school with learning and is repeating reception this year. Last year things started well he made friends but as the rest of the class matured and made age appropriate progress Piers learned very little and in fact regressed in many ways, this led to some of the children teasing him and being downright nasty little tikes. His twin sister tried to protect him but the bullying continued. The decision was made to keep him in reception when it was plainly obvious he was not ready to go on to year one. In some ways we were happy with this decision but in others it has made the bullying worse. The 2 worst culprits now seek him out and call him baby, stupid, toddler etc etc. Every time he makes a friend they go out of their way to stop the new child playing with him and Piers spends most of his time alone (confirmed by his sister). Last night he was trying to make himself vomit after telling me all day he was unwell and when i returned him to his bed he literally sobbed saying he has no friends and sits on the friendship bench all alone and hates school. His sister says she plays with him sometimes but has her own circle of friends and i don,t expect her to babysit Piers she has her own life. Piers really wants to be sociable but has no idea how to go about it he is rough and overthe top with people and scares people off we have tried to teach appropriate play skills but he is oblivious to the way he acts. I have been at work today so havn,t had the chance to discuss this with school and i will do so as soon as possible. Any ideas. I feel like crying but want to get hold of the bullies as well if u see what i mean.

Marcus went back today. Is very nervous but no tears and went without a fuss. He is more anxious as he has a bald patch where he has pulled his hair out (will post about this later when i have more time) and my mother took him to the hairdressers to get it sorted out. She misunderstood my instructions and told the hairdresser to give him a number 3 all over, obviously this has made it more obvious. He is worried the other kids will tease him which of course they will, so i will sit here and wait for the fall out when he comes home. Piers and lydia are back on Monday and Piers hates school so doesn,t want to go, Lydia is concerned about starting a new class without Piers, DH is taking them as i am at work. Lets hope everything goes Ok. and good luck to you all.

Good luck hope it all goes well. Try not to worry too much but i know you will.

Hi and welcome to the forum. My father is also 57 and has many characteristics of someone with AS. As my sister and I were growing up we instinctively new that he loved us very much but had great difficulty showing it, if we were upset he really didn,t know how to behave and became very embarrassed if we hugged or kissed him, as i grew older i used to do this all the more as i am a naturally very affectionate person and although he didn,t push me away he it obviously felt very uncomfortable to him. He would read to us but not really play with us, any days out were centred around his train obsession or trips to coal mines (his occupation) or engineering type things. He kept lists of things which he was very obsessive about (copies in a book the top 40 since 1975 and still has copies of these). He ate from the same bowl, used the same knife and fork and woebetide anyone who used them. We holidayed in the same place every year (they still do) celebrated events in exactly the same way every year and life was very predictable. As an adult he has work colleagues who would like to spend time with him but he can,t understand this and questions why they would want to contact him outside of work. He is very uncomfrtable at social gatherings and can,t wait to get home to have what he calls his yoghurt cuppa (cup of tea and a yoghurt) he can,t sleep without this and this is a standing joke within the family. When he visits my sister and I he is oddly formal in that he knocks and waits for us to answer the door and he never sits down he stays about 5 minutes chatting in the hallway and then gets home for his favourite TV programme. As we grew up we accepted these aspects of his behaviour and never really questioned it. When my first son was diagnosed with ASD in 2000 my dad asked me if i thought it had come from him and we all generally agreed that yes he was AS. Nothing else was said until DS2 was diagnosed in june and my Dad surprisingly became very upset and apologise to me and said it was obviously his fault as he also had ASD. This upset us all. It has never entered his head to get a diagnosis as he holds down a good job with good income and is happy in his own world. Him and my mum leave very seperate lives together IYSWIM that are happy with and she accepts him as he is. He is a truly wonderful man and i am very proud of him and wouldn,t change him for the world.

We go to a local farm and DS1 gets in as disabled and i get in free as his carer, i have never once been asked for proof.

I was looking on the internet last night about coeliac for myself. i have suffered from IBS since I was in my early twenties and have suffered on and off from a low iron/ ferritin level. I also get urticaria really badly. I was looking up low ferritin and it suggested it could be a malabsorption problem. A while ago I spoke to someone at the autism research unit about Piers as he was lactose intolerant as a baby and I was considering trying the diet, he asked about my health and suggetsed i could have a problem with gluten/ dairy. A nutritional therapist has also diagnosed this in the past. I am however worried about going to my GP as I have been to her so many times pushing for referrals for the boys i am worried she will think i am just a worrier (maybe i am) but the symptoms are there. My sister has chrohns disease and is awaiting surgery at the moment. DH didn,t want to get DS2 tested as he felt the diet is too hard to stick to we tried with Marcus, it wasn,t difficult for us just my mum but she doesn,t have much to do with the other 2 so shouldn,t be a problem. Hope you get some answers i would be interested to know how you are getting on.

Hi Smiley i do not have AS but have suffered from depression on and off for many years. i can relate to so much of what you are saying. At its worst i didn,t want to get out of bed and felt so useless I felt my kids would be better of without me. It is important to talk to someone about your feelings, if you can,t talk to someone close i found the samaritans very good as they don,t know you so you can blurt it all out without fear of any comeback, if you see what I mean. Are you on antidepressants if not talk to your GP thay may be able to help. Look after yourself, sorry not much concrete advice but just wanted you to know i was thinking of you. <'>

I used to work in a GU medicine department and it was of the things we treated occasionally. It isn,t strictly sexually transmitted but it can be due to close bodily contact. It is very contagious and you will need to make sure he uses his own towel and avoids close physical contact with anyone. We used to treat with freezing or breaking the scab and applying phenol i think it was, neither very pleasant. It does however usually clear itself but takes a while. I also am not sure about the immune system and none of the patients i nursed with it were HIV positive we had a few children and the others were adults who came for another problem and then when asked about the rash admitted they had had it for a while.

We are off to North wales Beddgelert to be exact or I would be calling in for that beer, thanks for the offer.

I have very mixed feelings at the moment. Have no money and the weathers rubbish to say the least so going out not much good. I hate leaving them sat in front of dvds or games consoles so have been dragging them out anyway. Found the HAMA beads yesterday and got them out, quickly regretted it as they are just scattered everywhere. Likewise paints now have 2 blue children and a ruined t-shirt. DS1 is at his nannas for a few days so he is happy. So far Piers and Lydia are enjoying being off school, Piers hates it as he gets picked on for being so immature and getting things wrong all the time, Lydia is worried about going into year 1 without Piers so they are both dreading going back. DS1 hates school as well. It won,t be long though before they are all bored. We are off to Wales on the 1st for 16 nights so should break it up nicely. Don,t even have money for . Hope we all get through it <'>

I have 1 great friend who i have known for 18 years. She has 2 children aged 8 and 5 and she is a lifeline always there with unlimited support and friendship as i am for her. We don,t meet up as much as we used to but we both try to have fridays off so we can meet for a coffee but realistically only manage about once every six weeks. My family don,t really understand and it causes too much hassle to be around them so most of the time i don,t bother. DH and i never go as a couple as it is too hard to get babysitters who can cope with the boys behaviours and we have no family that can help or we would want to help. Work dos I never go on for the same reasons. i went to see Take That a few weeks ago and it took so much planning and reshuffling it was a major ordeal (but worth it). If we go out we take the kids with us but that is very stressful too but we all kind of enjoy it most of the time. We have had to develop very broad shoulders and not care what others think but at times you just want the ground to open up. I suppose work is my sanctuary giving me a place to be myself and most of my colleages are really supportive and we still manage to have a bit of a laugh.

Bl**dy mothers is all i can say.

Wow that has made me cry as well partly as I see my boys go through it and occasionally my girl too and also because i was bullied at school and that pretty much sums it up. So glad they rewarded him for that. Well done, good luck with the outcome of the assessments.