vannie

Hi, How glad am I. I came on here today looking for some advice, your post is exactly what is happening to my son. School refusal, not eating lunch at school, and hid behind the bin all lunch time not wanting to be noticed. I had meeting with the school and we believe it is the pressure of SATS revision they are doing at school at the moment, and also year 6 transition. He has been coping really well lately. And all of a sudden he just went from being happy, social, trying to be all grown up(walking out of school gate alone and walking to the car). To a quivering wreck and not even being able to stay alone upstairs and not sleeping unless sleeping with me. I will try the suggestions. I am just so anxious myself worrying he is not going to be able to cope with secondary school.

Thank you everyone for your replies. I will definately be taking your advice and you have made me see this from another point of view. I have discussed your points with my husband and he says this is the way forward, small steps and not to embarass our son. So thank you for making me see a way through this, and my son has agreed as well. Regards Much Happier

Sorry but very upset. I had forgotten how bad some days could be. It started last week ds received free oyster card in the post, he obviously thought it meant he is now capable of getting the bus home alone because he received the bus pass. I explained it was to be used when he travelled with me, he wasn't having none of it. We had tantrums for 2 days with him saying all the other children in his year (year 6) go home from school alone. I tried to explain the reason I didn't want him travelling home alone, anyway went to meet him from school on Wednesday nowhere to be seen, he had managed to slip past me at the gate, and was happily standing at the bus stop waiting for the bus. I made an agreement that he could walk to the bus stop alone from school where I would meet him and we could get the bus together. That said it was his 11th birthday today, what a day. I was only just telling everyone how much he had improved in the last 6 months, as if he was learning to cope and leading a pretty normal life, me and my big mouth. Today he didn't want any of the presents we had bought him, I had a phone call to say he was very upset at school and was crying but they didn't know what the problem was. Anyway he had managed to board the bus all alone, frantic I managed to meet him at the stop he gets off at(friends car) before the bus arrived, I have no authority over him, it's as if everything I say he does not hear. I had arranged for family to come round for an hour but told them only if he agreed to it that afternoon, when asked he said it was fine. When they arrived all hell broke lose, he finally locked himself in his room crying saying it was the worst birthday ever, everyone left (very understanding). Once everyone left he told me, husband and daughter we had ruined it, and called my husband the 'C' word, and started getting physical. It seemed that he couldn't see through the blue mist, he was very physical when he was a bit younger, but I haven't seen him like this for a long time. He then said that he wanted everyone to come back, I explained that they had all gone home for their tea he finally just sat and sobbed and said he had expected more presents then we had bought him. Is this a spoilt child or is this part of what we should expect. I know that birthday and xmas very emotional for him but never has he acted like a spoilt brat. Now I am worrying he is getting a big lad and that if my husband isn't here how would i deal with him. The brut strength of him tonight, he very nearly overpowered my husband

Thanks Jsmum, I am feel a bit more focused this morning and will go forward and try to not blame myself. I will ask my husband if he will go to marriage guidance with me and if he flatly refuses then I know he truly does not want a relationship with me anymore. I will still go to CAB today and find out my options.

Thanks for all the advice and think your right will defo go CAB in the morning. He has come home and tries to act if nothing is wrong like I'm the one to blame for all this. I'm getting madder, I just want to scream and shake him. His tutting at me and making me think is it all me, am I a nagging old witch? He is also in denial about our son's aspergers, can't bring himself to talk to anyone about it. I've gone through all the diagnosis and meetings alone. So I suppose I won't miss his support because I've never really had any. The more I think about things the more reasons I have to leave.

Hi, Not sure if this is the right place to put this thread? Sorry it's long, but I need to get this off my chest. I having difficulties in my marriage, my husband is a drunk. He is completely in denial. He works shifts so he doesn't drink every day. When he is not drunk he is a wonderful man, does lack emotional (suspected ASD by myself) support, but I can deal with that because I can understand this from going to the workshops for my son's support. But when he is drunk he's vile, he calls me names then when I get upset he says I have no sense of humour. We had a weekend to ourselves just gone, twice a year occurance. I was really excited and even managed to not be too worried about my son who was at Scout camp. Anyway it ended up with him drunk and abusive and I was left in London with no money on my own for about an hour until he decided to come find where I was. This also happened the last time we went out. He was very remorseful on Sunday and said he would never drink again, and he had convienantly had a blackout so he didn't remember what had happened the night before. I just called him and guess where he was, in the pub. We do have money worries as I have given up full time work as my son wasn't coping with child minders, we tried relatives still didn't work. But he always finds the money for the Pub. I'm at the end of my tether and I want out to sort out my feelings, but I'm so worried how it's going to affect my son with asperger's. He absolutely dotes on his dad, and I do really love him still. How will he cope with the change of one of us not being there, and if I do realise I don't want to be with his dad how will he cope with a home change. My husband says I'm being selfish and not putting my son's feelings first. Am I selfish? What if I do leave I have no money, I get carer's allowance but that won't pay any bills, plus my name is on the mortgage so will not get any help with housing costs. I don't know what to do, has anybody had any experience of any of this please advise me what to do.

OK thanks a lot for the advice.

Hi just wondered how aspergers was viewed by insurance companies. We are just looking to renew our mortgage cover and our current policy cover has child benefit cover. It states that if one of our dependents becomes disabled (diagnosed) then we are entitled to the premium. I know these insurance companies have different clauses, but just wondered if anyone knew anything about this before I start making enquiries. Thanks for any advice.

Hi thanks for your replies, got the letter today. I got LRC & LRM, not sure if I'm so pleased now, was at least expecting MRC, can I ask for another reconsideration or should I go straight to appeal.

I can't believe it got DLA for my Asperger's son after reconsideration, I really thought I was going to have to fight for this. I checked my bank today £697 been paid in from DWP. I haven't received the notification letter yet. Not too sure what rates though. It doesn't work out right of any combined or any single rate. I have the original letter which states they received my claim 20th Feb 09. If anyone is able to help can you advise me what rates I've got, too impatient to wait for letter. Do they pay part weeks and is this payment in arrears, and does this mean I will get my payment this date every month? Thanks.

Thanks everyone. It's nice to see all the different views. My work have comprised with me and are going to see if it works out for the business. So I am just working to 3pm so I can collect him from school. He already seems a bit happier, even though we had a very challenging weekend - nothing unusual there, so fingers crossed. I have been to Bromley Autistic Trust today who have told me to push DLA and if they refuse again will help me go to tribunal, so if I do get DLA then I could consider giving up work anyway. Thanks again.

Hi, Thanks for all your advice, I think I've decided what to do. I've really known all along that I wouldn't be able to keep a full time job and look after my son. I will ask my current employer if they can reduce my hours, if not then look for something part time. It really has helped hearing from people who do have an understanding of how I am feeling. Everyone at work just say who's the parent here, and they just can't grasp, no matter how much you explain, that it is a completely different ball game with these children. Thanks very much.

Hi, Just wondered your thoughts on my dilemma. My 9 yr old son was diagnosed with aspergers last month. I started full time work last September. He went to a friend of mine after school who was also a child minder, he seemed to be coping and it worked very well as she understood that he might have aspergers, and had been on a childminders course on how to deal with special needs children. Just before Easter it all came to a head, apparently her own son and my son had been bickering a lot, then she heard screaming and my son had his hands round her sons throat and had nearly strangled him. I agreed it better all round if I found a new childminder even though she was happy to continue having him, she still looks after him in the morning for 30 mins, but that works ok as they are not together too long to have a disagreement. Anyway my sister agreed she would collect him from school, she has 9yr old girl, also 3yr old and 18 months old all girls. It worked fine until last week. My son was calling 3yr old names and generally pushing her about. My sister wasn't very happy about it and said to me it wasn't fair to her daughter, even though my son still wants to go there after school. She said she would have him but if he was in one of his moods, she wasn't happy to have him. I said I can't predict when he would be like it and therefore it wasn't practical. My original childminder has said she didn't mind trying again if I wanted to give it go. My problem is I don't want him to keep being rejected, he is down on himself anyway, saying people don't like him at school and he has asked me for along time why do I have to work. I just want to throw in the towel and give up work, but then there's financial side we would just about cope, and my own sanity I will be very bored at home while he is at school. I know I could compromise, but it is very hard to find an employer who allows you time off for all the appointments, which is what my employer does at the moment, but the position I have requires full time hours. I really enjoy what I do and get on very well with all my collegues, I don't think I would find a better job. What do you think I should do?

Thanks everyone for all your advice. I have had the meeting and they have diagnosed aspergers and are sending to OT for assessment on dyspraxia. They said the reports of all the tests and their diagnosis will be sent to all. They agreed that the school should have had a representative there and felt for me. They said that H is on action school +, and believed that the school would not support a statement but I could ask for Stat Asses if I beleived he needed it. They said he has high intellect and was coping well at school, even though they are aware that he isn't at home the statement was for educational needs. I have now been discharged from CCDS. That's it 6 more sessions with Camh's and they will tell BAT to get in touch with me. I don't really feel any emotion at the moment, but I haven't had a chance of sitting down yet. I am so thankful for this site, they gave me no leaflets or information just a photocopied piece of paper with Aspergers ticked. I will be looking through the site later for info and will probably have loads of questions to bombard you with. I hope you don't mind. Thanks again for all the info so far.

Hi, I was wondering if someone could give me some advice please, Boy aged 9. I have a feedback meeting tomorrow with Camhs, paed, phys ed, autistic trust, myself and school senco. I believe this is where they will give me a formal diagnosis. He has had ADI and ADOS test which he refused to do, several meetings with Camh's where he has been uncooperative. They said at the last meeting if everyone agrees they are probably looking at Aspergers. School referred us and have bought in all relevant agencies. I had a message on my answerphone today saying senco unable to attend as prior engagment???? I thought the whole point of the meeting was for school's sake?? She said they never informed her until 20th April, so why wait until today a day before the meeting to tell me, she has had 7 days. They have sent a report, which I asked for a copy of and they are more or less saying that my son doesn't need any extra help. Why have they bothered to put us through all this and then back track when it comes to critical meeting. I applied for DLA and was refused because school said he had no extra special needs than a normal child of his age?? I can't get my head around it. Can anyone tell me what to expect tomorrow and what questions I should be asking? Many thanks for any help.

Oh my god. Got to centre today H unresponsive would not even go into the room to do ADOS test. They took me and husband in for chat and said they were happy to go for diagnosis on history. As long as pead agrees, then feedback meeting will be arranged and diagnosis will be Asperger's. I can't believe it was as simple as that. She said it was suspected at first meeting but they had to go down official route. Now CAMH's meeting has been arranged 1st April. I am just oh my god at the moment.

Hi, I have finally got ADOS test tomorrow for 9yr old son. I am really worried. Have had flu like symptoms all week, I think it is stress related. He has already had an ADI. I have been crying out for a CAMH's appointment for months and they still haven't made an appointment. We couldn't cope, mood swings, wishing he was dead, been through two childminders. He tried to strangle first childminders son. Now saying new childminders daughter- who is 2 and half is bullying him. He is only there an hour. Now low and behold we are starting to get things moving and guess what he is the most happiest, co-operative and loving child you could ever wish for, things have improved at school. Don't get me wrong I'm really happy about it, but I wish these tests could have all been done when he was in meltdown. Will I get the results tomorrow re ADOS test? I feel so low at the moment, I just want all this to be over. I feel like I have kicked up a fuss over nothing. How easily you forget the awful feeling of I wish I could walk out and never come back. I just hope he stays this happy.

Thanks for that, I wish they had put some explaination with it instead of just adding it to the report. The school said that they were trying to dx high functioning Aspergers.So as far as the ADI goes he will not be diagnosed, is that right? Sorry to be naive but I just can't get my head around it Thanks

Hi, On medical report from CCS there is a ADI algorithm score can anyone tell me what these mean in layman terms. Communication Score = 9 Clinical cutoff 8 Social Interactions Score=17 Clinical cutoff 10 Interests & Behaviour Score=1 Clinical cutoff 3 Thanks.

Thanks I will look at that link, I don't even know if he is sen or action + the school haven't explained this to me.

Thanks for replying, what does a statutory assessment entail? And will they give me a statement without diagnosis?

Hi, I have been reading through the posts and would like a just a bit of advice if possible. H is 9 years old. I had a problem with bullying at school and kept approaching school asking them to do something re my child was coming home crying, bed wetting, hiding and refusing to eat and attacking 12 year old sister saying he was very unhappy at school. No parent contact after school unless I approached them. The school then contacted me out of the blue asking if I would come in have a chat. Hurray I thought finally, but it wasn't what I expected. They said that H was asked to do a written assessment, he refused blank saying he did not know what to write, and sit there with arms folded sobbing saying he just couldn't think of anything. They said this had happened a couple of times(I had not been advised). They wanted to have him assessed for ASD. NO not my child this is all due to bullying. Anyway I was in denial. I thought I would go through with this just to prove them wrong. Anyway I had a meeting at school with special needs teacher his form tutor and a gentleman from pupil support services. He suggested H be referred to CAMHs and be assessed. Since that meeting in April last year he has had an initial meeting with Ed Psy at CAMH's tier two, no follow up as yet, as they said he would benefit from counselling. He has met with a paediatrician and she referred him to the Complex Communication Diagnostic Service. In the meantime I have started back at full time work and placed him with a child minder a friend who I could trust to let me know of any worries and who H has known for many years. He had no problem with mixing with the other children at the child minders and things seemed to improve, he was generally happy at home and school. I have had no contact from anyone, then an incident at school one of the boys had been calling him names I approached school teacher who was new to the school and told me she was unaware H had been referred. I was very surprised. Anyway she dealt with the bullies and it seemed fine again. Just before Xmas he had a written assessment again he sat there arms folded, refused to do it. Not a thing from school, H unhappy, so again contacted school she told me what had occurred and H had been told off. She told me he has to do these assessments, but I said you know he has a problem this part of why school referred him. She said she thought it was just for communication. Anyway after xmas sent him back to school had been happy over holidays. Things starting to deteriate again. Even child minder noticing difference. He came home from school one evening hid in one of her wardrobes, and then layed curled in a ball on her bed - no explanation. He changed at home again moody, talking of suicide, wishing he was dead. This went on for over a week not wanting to eat. I went to the school spoke to special needs teacher she would get in touch with pupil support service and arranged meeting and suggested that I talk to local Autistic society for support. I said why what do you think might be wrong she suggested high functioning Aspergers. No information has been given to me or anything explained to me in form of leaflets. I met with pupil SS and class teacher, he discussed coping strategies. I said not happy with school and was thinking of taking H to another school, he said it would be the worst thing to do for H at this moment in time. He would urgently contact CAMHs. I told him H very down and depressed and taking him to GP. GP said he would push CAMH's to see H. I received a call from child minder next day who had not collected H as my husband had day off and he collected him. She told me that a younger child who she had looked after had been concerned for H as her teacher had shouted at h and made him cry. Nothing said to husband when collecting him. Then a another parent contacted me asking me the same question. Could not get much out of H but is seems he was asked to write a assessment on half a page and could only write two lines, so was sent to another classroom where the teacher shouted "dont you treat other staff like this"etc. A third person has also commented on this event. I am absolutely shocked. I cant get in touch with school because of weekend - snow. I felt teacher didn't think anything wrong with Harry as she said he was just stubborn! Hopefully school is open tomorrow but what do I say? I find it hard myself expressing how I feel. If they do suspect ASD what should school be doing? What rights do I have? Can I just pull him from school? I know he hasn't been diagnosed but does he sound that he may have ASD? The more I read on this forum the more I can relate to. Can a child be so happy one day and so depressed the next? Please help. Thanks.