mum22boys

Thanks guys. <'> I feel a bit better today. I keep thinking perhaps I should have seen it coming. But perhaps the truth is I didn't want to believe anything could be wrong. I focused all my energy on M, getting him seen, assessed, fighting the school, dla etc that i was probably too damn worn out to see R was not good socially. The truth is he isn't as bad as M so we kept thinking he would be ok, the pead would say no problem...go home! I can actually say this has come as more of a shock than when we first thought M might be on the spectrum. I think part of me thought people would think I was paranoid if I believed both my kids were on the spectrum. I know the head at the school M is at and R is at nursery there won't believe it when she gets the peads letter about R. I have spent 2 years battling for M at the school, she will probably want to curl up and hide when she sees I have two to fight for Anyway, life goes on regardless of what it throws at us! Thanks for listening <'> mum22boys

Hi all. DS2 had appointment at CDC today. He was referred about 6 months ago as we had concerns over his behaviour, rituals, routines and some obsessive behaviour, he is 3 and a half. DS1 is to be assessed in April and is much worse than R so we didn't feel too worried about this assessment at the CDC. Several weeks ago both me and hubby thought R had improved and I went to the HV and asked if she thought we should cancel appointment. She said if she was us she would keep it as it would be a full development check. So we kept appointment believing we would be told everything is ok. Assessment started to go ok. We felt the questions we answered were not really pointing to ASD. During the actual assessment we realised that perhaps things weren't going as well as we thought. He was quite abusive at times (wanted to chop her head off - good job his speech is bad because we don't think she understood that). Then half way through he became a dinosaur and sat roaring about 3 inches from her face. This continued until she changed the task she had set. At the end she said she felt his behaviour wasn't right and he scored low on social and communication. The one good thing is he has good imaginative play skills which we knew. She wants him assessed at the communication disorder assessment clinic. She will also see him again in 6 months. She was positive in the fact that she feels he won't get a diagnosis as he doesn't tick all boxes but seems to think he may be on the spectrum somewhere. Feel completely overwhelmed. M is so much worse than R that now i am thinking how is his assessment going to go. Just needed to 'talk' to others as I really believed R was ok, like 100% ok. I think i'll take painkillers and have an early night. mum22boys

Hi, I felt like I really understood where you were coming from. <'> M is 6 - no diagnosis yet, assessment in April. Today he had E.P assessment. I was disappointed with her findings as he was having a 'good' day and was model pupil in class! Except when she spoke to him and he refused to talk to her and ran to the corner of the room. She discussed her observations with us and said she had watched him at playtime. He played football and she said it was unusual for kids considered to be on the spectrum to play football!! He's 6 and will kick a ball about when he wants to. Does this mean he won't get any diagnosis! Who knows. I agree with loulou. My son can be sociable BUT on his terms and when he wants to. You can't come to a conclusion by a brief assessment. I am hoping not to end up feeling as you are in several months time but who knows how M will be percieved on the day. Do try to get a second opinion, you know your child best. mum22boys

Hi, we've been a couple of times and kids love it. I must say though it completely stressed M out. Obviously there are loads of crowds and noise. A few tips, If your kids want to watch the parade get there early, sit them down at the front and arm yourself with drinks, candyfloss etc to ease the wait. I would also recommend standing next to your child so you can move slightly if the crowds get too close. This was a major problem for M as he can't stand people touching him and he actually attacked two little girls whilst waiting for the parade. As I said it can be avoided but you have to keep on top of it. We found some people extremely rude asking for our kids to move up so theres could sit down, after we had been sitting for half an hour waiting. Stick up for yourself and say no and explain why if you have to. Eat your main meal at lunch times. It gets very busy at night (6pm onwards) at the restaurants. If you eat at lunch the restaurants aren't full and service is quicker. Book into the most expensive disney hotel you can afford. We stayed at the santa fe a couple of years ago and the breakfast situation was a nightmare. Too many people not enough tables and a long wait for breakfast. Last year we went to the new york and breakfast was so much easier as was the journey to the park, it's walking distance. We didn't have too much problem with queues as it was october and M doesn't care much for rides, he loves to walk aroung looking. You can fast track most rides and so don't have to queue. If walking is a problem for your kids you can hire a buggy on a day rate, well worth it if they struggle to walk. Theres probably loads more things but brain is starting to switch off now. Have a lovely time if you decide to go, we try to go every other year, the kids love it. PM me if you want any more info mum22boys

Hi all, After a big complaint to M's school over the standard of his education and their understanding of him we are finally getting somewhere. M will be assessed in April by the CDAC. After finding out the head/senco of M's school had decided to remove him from the e.p list we wrote the letter of complaint. We were then given an appointment with the head and e.p which was due to take place today. Yesterday out the blue the head phoned to say the e.p will assess M tomorrow and we have to be at the school just before lunch to meet with the e.p, head and class teacher. I am so worried about what will happen. What will the e.p be doing with M? What does she look at? I am worried i'll get to the school and she'll say 'no problem, everythings fine'. I know deep down that it's unlikely but am so nervous. Help! Please tell me what to expect. mum22boys p.s M is 6 1/2 and in year 2

Just to update. I spoke to parent partnership, who have agreed to come to a meeting between us and the school. She has asked the head is we can initailly meet to discuss M's IEP. The meeting is in a couple of weeks time. I'm pleased it's not yet as i have time now for his private tutor to properly assess where he is academically. We have also been invited to a meeting with the ed. pysch next week, which we are going to. Thanks for the advice you gave. mum22boys

M is 6 1/2 and only recently has he started using both a knife and fork. He is very clumsy though and not too good at it so we still do it for him. He can use the fork by itself though. He still doesn't just go to the loo in the night. If he needs to go he moans very loudly and when I go in his room he will be sitting up rocking. I have to lift him out the bed (high cabin bed!!!) and carry him to the loo. He then stands there still moaning as if he doesn't recognise what to do. This can go on for over 15minutes. He hasn't had too many problems with falling out of bed. Getting him to stay there would be nice!!!! Watching him dress himself is painful. If I don't supervise he wouldn't put all the clothes on required. Last week I forgot to put socks out and he didn't question it he just put his shoes on as usual. When I asked him what he was doing he said I hadn't given him any. it never occured to him to ask for some. It is easier to assist than leave well alone! Washing needs supervision too. The other week I left him to do it himself. I left all the things out he needed and was astonished to find the whole procedure took 50 minutes. That is how long he takes to do it himself. I have to do it for him on school days. mum22boys

Thanks nellie, Sorry to sound like i'm gatecrashing but you can listen to the interview on the BBC4 website if you click on 'listen again'. The interview was at 8.36am. Also the website to access info about this test is at www.DLDCN.com. It appears you can order the test for �50 Sorry not sure how to do links!! mum22boys

Thanks for your reply Helen. How does it go requesting an assessment for M's needs when the school refuse to admit there is a problem? The trouble is she is very good at making us look like liars. She doesn't want problems in the school, she just wants good attendance and good key stage 2 SAT results. I don't think she would try to get any child in the school statemented as out of 321 children approx 50 have special needs, yet only 1 has a statement. We are working against her and she doesn't like it so I don't know what would happen if we requested a assessment by the LEA. I have written to the Education director sending him a copy of my letter. I am also considering asking OFSTED when the next report is due as I am sure it is way overdue. Any one know how often they should be done? Theirs was in Sept 2001. mum22boys

Thanks for the replies so far. I am going to contact parent partnership tomorrow. I have met the lady once before, she is very nice but obviously i need to meet with her regarding our problem. It is not so much IEP reviews more often we want, more that he receives extra help where needed. The help on his IEP has been nothing different to what the other kids are doing. The two things that are specifically directed at him doing additionally he has no recollection of doing, which leads me to believe they were not carried out. His IEP review is at parents eve this week. I will be thinking of asking his private tutors advice, difficult as he has only just started lessons with her, although they know the school is not supportive. Thanks, mum22boys

Hi all, I am in a big battle with M's school over his education. M is 6, no diagnosis as yet but has been seen and we have been told he has features suggestive of him being on the autisic spectrum. Assessment is in April. After constantly being told by the school M is doing ok he finally got a IEP put in place in October 2006. This was his 2nd IEP. The first was the year before listing social problems, role play etc. The second is problems with reading, writing and coping with changes in the school day. His reading and writing are poor. We have realised that the 'help to be given' on the IEP was actually no different from what other children were doing in the class. The things that appear individual to M he has no real recollection of doing daily as stated. Now either his memory is extremely bad or it hasn't happened. We are very worried and arranged for M to go to a private education centre last November to see if he could have extra help, paid for by us after school. They were brilliant and managed m very well in his initial assessment. It was decided he needed 1-1 lessons not 1-5 they usually do. Also as his attention span is not great it was decided to do it in 2 half hour slots after school. He started his tuition last week. His tutor is excellent and said in a couple of weeks she will be able to give me a clear idea on the level he is working at. In just two sessions she identified he has a problem hearing the ends of words. The school haven't mentioned anything about this but i'm not suprised really. Anyway after being totally unhappy with the school i wrote them a letter this week voicing my concerns. I said we were concerned that he will not be up to standard to sit his SATS. He is no way anywhere near up to being able to read the text required let alone understand and answer questions. He is still getting to grips with the reception high frequency words. We mentioned no appointment being made for a revisit by the AA teacher which she was supposed to make in the autumn term and the fact that she neglected to tell us she had informed the Ed. pysch that he didn't need to assessed and was a 'maybe'. We made it clear our critisism was not on the teacher as we understand she has 25+ children in the class, more on the SENCO/Head who haven't provided extra help for him. Speech and Language and the ED pych said she should be holding social skill lessons for the children that need it. And believe me every time i see her she maks me feel that I shouldn't be complaining as she has x amount of other kids in key stage one just like M. So I asked in the letter if that is the case why does she not hold social skill lessons. M's teacher told me a week ago she was having problems with m in class and in the playground. The head just seems to brush it under the carpet. Today i had a respose to the letter. She didn't answer any of my questions. More pulled the letter apart. She did not comment on any part of our concerns with his education but informed us the SATS were not 'sat' rather done over a few months. That was not our concern it was the inability we were concerned with of him being able to do the work. She made it sound like i had critised the teacher and made sly comment to me not passing on the tel number of the CDAC because she wanted to try to 'hurry his appointment' along. I never trusted her enough to give her the number as she lied on the DLA form which resulted in me having 7 months of hell getting him the DLA he deserved. He only got it once she wrote a true account of what was going on at school. I sent a copy of the letter to the governers and also the education department. She has now asked to meet with us and recommended us contacting parent partnership. Will they come along to the next meeting with her? I am dreading meeting up with the head again as she twists everything and makes us out to be liars. It results every time in me getting upset when I leave. I feel this is such a hard battle, any advice anyone. Please mum22boys

After waiting almost two years we have an assessment date for M. He will finally be assessed on the 18th April, and not a minute too soon Feeling glad we might finally get some answers. mum22boys

Hi, We've not had the ghost problem but have plenty of sleep issues We have found several things that can help M who is also 6. When he is very worried and scared I told him to imagine he had a box (you could actually get a box). Then I asked him to tell me all the things he is scared of. He reeled off a list and we 'placed' them in the box. I then took a 'key' and locked the box for the bad things never to escape. Just a word of warning though, if you do this explain the box can be reopened to place any further bad thoughts in. we had a big problem with this because i told m I threw the key away! This did help for a while. Also last night M was scared so i took out a few boxes of photos of when he was younger and gave him these to look at, so he could think happy things. I hope something eventually works for you. We are going back tomorrow to the GP as M is not falling asleep until at least midnight every night. We are all exhausted! mum22boys

Hi JJ's mum, Firstly, don't beat yourself up about not noticing your sons behaviours. I'm sure I can speak for most when i say I am still discovering my sons behaviours. Unfortunately until diagnosis (I assume from your post your son is not diagnosed) you will probably do as i do and look and question everything. I look at M (who is 6 and been awaiting assessment for a year and a half) and I see things all the time. Not so long ago i realised the jumping up and down, panting and flapping his arms were part of what we are trying to figure out is 'wrong'. I too realise that unless I give M a detailed breakdown of for example 'go and have a wash' he will probably not do what is expected and brushing teeth needs to be explained. It has taken me a long time to realise this. We also can't give M more than one instruction because he can't retain the info. If he doesn't speak as soon as the thought comes into his head it has gone, making us teaching him turn taking in conversation very difficult. he actually sits and shouts 'gap' now where he thinks he can speak. Yo have to be careful in our house if you breath mid sentence otherwise he thinks a gap has occured Only last week did i realise his speech has become strange, when I say strange I mean he has started talking as if he is reading a script, taking long pauses as he thinks. Almost robotic. Not all the time just every now and then. He talks at you, not to you. He very rarely answers questions in the correct way e.g 'What would you like for dinner?' he may respond ' Six cards in a pack' (with ref to his current obsession, football cards) If I continue to ask, could take a dozen times I will eventually get the right answer. I think we as parents get very used to it very quickly and forget how different our kids can appear. i don't take m to shops that often unless I have to. He shouts and makes loud noises and runs around touching everything, and on a bad day he has a tantrum. Through all this he is the most affectionate lovely child ever. Unfortunatley he also takes his problems communicating out on me and I am usually the punchbag when he is frustrated. I wish you luck finding your answers, but remember as someone else said he is still the same little boy even if you are discovering different things everyday. mum22boys <'> <'>

Hi, Haven't been around much lately, seem to have spent Christmas in my own little world....if you get what i mean! Anyway, M's back to school as of today.....and what a day (well morning) it was. Started with the refusal to get out of bed. Followed by refusal to come out of room.....all the while shouting that he hates school and isn't going. I called for an hour , which made him even angrier. Usually I don't let it get to me as the school know the problems i have but still brush it to one side. I have a bad relationship with the school ...or should i say no relationship Before xmas M was late every day for at least 3 weeks and although the head has told me she can only access help for m if he has a problem with being late she doesn't mark his record as late!!! Anyway, today was a different story as younger son was starting at the nursery. I was determined he wouldn't be late for his first morning because of M. This was fast disappearing as 8.40 arrived and i literally risked all and got him out the room. All the time he was screaming about hating school. We never made it in time, R was 5 min late but not too bad. M dragged behind all the way to school frowning. I told him he was coming in to see the head with me to tell her what he thinks. She always makes me out to be a liar when I tell her how he hates it there. Anyway, get to school and head is in assembly, i'm told to wait 15 min if i want to see her, M goes mad because he wants it sorted now (at this point i don't know what i'm trying to sort!!! ) He reluctantly agrees to wait in the class until she is free. Teacher then comes out and says' he seems ok now, do you want to go?' Oh yes i'll go shall i and leave him confused all day as to why he hasn't been called back. They just don't get it do they. After a 15 min wait i find out she isn't coming to see me as she has classroom observations. Am now fuming as she is SENCO and i want to sort M's problems out. Leave school telling them not to bother getting her to ring me as she is a waste of time anyway , but whilst they are informing her I waited can they find out where he is on the ed pych list as he's been on it a year!! Tonight, find out the problem is playtimes. He can't understand why the kids play games they make up, why they tell him to do different things. He says he doesn't want to do what they say, he wants them to do as he says He wants to know why can't they just play together like they did in year 1 (he's in year 2)why do they have teams, he doesn't want to be on anyones side. He ends up alone and he wants friends. He actually said' I don't want to be alone I want friends' I'm sorry for the long post. But how do your kids cope in the playground? I'm going to see his teacher tomorrow but expect nothing really, the head say she has watched him in the playground last term and he seems better. He is clearly anything but better. I phoned the ed pycsh today and left a message for her to ring me. Any advice would be appreciated. Thanks mum22boys Just to let you know M is 6 and still awaiting assessment.

Feel i'm rather late to this thread but have been very busy lately. I watched 'after Thomas' this morning. Kids went to Grandmas and i watched it while wadding through the ironing. I cried after the first 10 minutes. I felt i was watching my life with M. The tantrum and the shoe shopping thing, it was portrayed very well. I suppose i watched and felt sorry for myself that i have to cope in those situations too. I hope those who have little knowledge of ASD's will have gained an insight into our lives and the daily struggles we face. Lets hope the staff at the DLA office watch and then we wouldn't have to spend so much time and energy justifying our claims. mum22boys

You may not think it but 12 weeks - is that all!!!!! We have been waiting 18 months already and have approx 4 months left to wait. Believe me 12 weeks is not long! Good Luck mum22boys

Hi, My son is also 6 and finds shopping very difficult. I usually leave him with someone rather than take him but it's not always possible. I have just bought a magnetic shopping list for m to carry around the supermarket. it has a list which you put the pictures of what you want your child to find and a picture of a trolley that they then put the magnet in once they have found the item. Not sure if it will work as i only had it delivered yesterday. But I was willing to try anything. I bought it on the yellowmoon website. mum22boys

Thanks, Have decided to ring CAMHS first. He is still under them and I think the fact he is unhappy at school is causing the sleep problems as well. His psych will phone me later, hopefully. Will keep you informed. mum22boys

Hi all, Could someone please give me an insight on what the educational pyschologist actually looks into and assesses. M has been waiting to see ours for months and months. I have met with her once and she has since told me he is scheduled to be seen sometime this term! The school are useless and the head/senco brushes it all under the carpet. The thing is I am worried about M. He is going through the hate school stage (again) and has said he feels dead, doesn't feel alive anymore. He also talks about dying a lot and told me he thinks he's dying, something in his head is telling him that. I am thinking of writing the head a letter telling her I am concerned and asking her when exactly he is going to be seen by the ed pysh, but wondered if this sort of thing is something she would be looking at. IF anyone knows i'd be grateful. Thanks Mum22boys

Hi Paula, I am everything goes ok for you today. Take Care. <'> mum22boys

Hi all, After a very tough week both with M and the school, we are now going through the 'I hate school' phrase. I knew this would be coming as several things have happened this week (my post on the school trip will explain). i told the head the other day I was worried we were heading for 'hating school' - thats him not me (although i also hate the school ). I must add that although my relationship with the school is at an all time low M doesn't know that. All weekend he has said every now and then that he has stomach ache. Then follows it up with 'Do I have to go to school' Last night he was sobbing 'please don't send me back there'. He says he has no friends. He does have two boys that play with him but he says unless he looks for them they don't bother with him and sometimes don't want him around. He then kept saying he feels dead, he doesn't feel alive anymore. He is 6 years old and although he talks about death and dying a lot it is strange to hear it from a child. A couple of weeks ago he told me ' I have this thing in my head telling me i'm dying' I told him not to be silly and that he's not dying, but he was insistant. When I told DH later he said M had told him that also. Do any of your kids talk like this? It's worrying me. he has trouble with sleeping, for which we are going to the doctor next week. But he seems so down at times. M is not yet diagnosed, he is still waiting to be assessed. Any thoughts on this please. mum22boys

Klou, has your health visitor written a letter for your DLA claim or have they filled in a form from the DWP? I ask because generally it is not enough to just tell them the health visitor knows of the problems you face. They want written evidence. Send in anything you can, even letters from family, friends and strangers if they will write what they witnessed. If the health visitor hasn't written a letter ask her to do so. You will need everything you can. mum22boys

Hi, I can't answer all your questions but some did strike a chord with my youngest. R is 3 and we are waiting for him to be seen at the CDC, he is also currently under SALT. R is quite difficult to understand as he can't say most letters, he doesn't use the back of his mouth so uses b and d a lot. However although i know he understands me I have realised if I need to say anything more than say 3 words to him I need to slow down and say my sentence in 3 word sections e.g 'Did you see'...'that car there'...'he was broken'. He can then understand me. Before I started doing this he said 'what' everytime i spoke to him. My eldest is 6 and had exactly the same problem except he would say to me 'what did you say'. R also repeats what I say in parrot fashion and has big problems with convincing himself . So he repeats himself to me over and over all day long, the same sentence which is usually 'i'm a red man'!!! If anyone calls him by his name he screams and comes back to me screaming 'i'm a red man' Is your child having SALT? mum22boys

Tony Attwood mentions in his book a 'jekyll and hyde' character, where the child 'copes' with school and then the pressures of school are released at home. You are not alone, my son also is like this. School do see problems BUT the head doesn't want to believe her school could cause him stress and it is usually swept under the carpet. He plods along fine on normal school days, but if they do something different then all hell is let loose. Just wondering, you said you were waiting to hear about DLA after appealling. Did you get turned down because of a school report? I had this when applying for M's DLA. I sent in loads of supporting info but the school said he had no problems and I had to fight to get him it. mum22boys