Mandapanda

I am sure you don't need me to tell you that the problems with Piers and the stress you're all under is probably why Marcus is being so obsessive at the moment. You need to tell CAMHS (perhaps print out what you have typed here) about how this is affecting all of you. Last year our Marcus appeared to be a typical teenager - couldn't 'be bothered' to do school work etc and decided he didn't want to go to college. It now turns out this was due to the stress whole family was under and he was getting a bit depressed, just showing it very differently to his brother. This year he is much more enthusiastic about school work and going to college. Our children show their anxieties/worries/unhappiness in very different ways. I don't know if you could talk to Marcus about what is happening with Piers - at a time when Marcus is not obsessing (if there is one!). You might be surprised by what he has to say - out of the mouths of babes and innocents. Thinking of you.

I know how it feels to break down like that and I feel for you. I've broken down at school, at the GPs reception desk, in the pharmacy, at the chiropracters, in the bank etc..... (over the years that is, not all this week!!) I once broke down at the school Easter Egg Hunt, because I had got the time wrong and we turned up after all the eggs had been found. I felt so pressurised to get it right for my son and felt I had let him down and ruined the day. Ho hum When my youngest had started becoming really difficult to get to school I just wrote a note to my older boy's tutor stating that if he was late it was due to his brother and could they not punish him at all. Luckily it was mostly OK. Older son (also a Marcus) chose to go by bus in the end so that he wasn't held up by brother (that probably doesn't help you though). We too have had a lot of sleep problems and it is draining. Even if the kids can catch up on lost sleep, we can't as have too much to do or just cannot sleep due to stress etc. I know I am more prone to being emotionally fragile if not getting enough sleep. <'> <'> <'>

Aw still not doing his Home Tutor sessions - we're now in the same cycle as we were with school before, us hoping he'll do it and him feeling more pressurised. Aw wouldn't come to CAMHS with us Monday. He said because he has made some progress with sorting his sleeping he felt he could do it himself. He also said going and talking about 'his problems' made him feel he had more of a problem, even though he 'knows it is a big problem'. He was adamant it wasn't anxiety stopping him going, but I don't know if as he's clever he is coming up with these reasons to justify him not going when the underlying reason is really anxiety. We went anyway and spent most of the time with me telling her about my past and the depression I have experienced. She was very kind and understanding and said that even if Aw doesn't come to sessions it wouldn't be the end of their supporting us as she felt we need support as a family and particuarly me as I bear the brunt of it all due to husband being out at work full time and because Aw is very dependant on me and wants me to do everything for him. I don't know what to do about school. Do I wait for someone to contact me, or do I contact the EWO or school or the school nurse? I know as a last resort we could simply deregister him from school - it would be the easiest option, but I am not sure what to do for the best. He should be starting Yr9 in September and doing SATs next year and choosing his GCSE options, but I don't see how he could ever get to that stage at the moment. I had hoped we could go to Southampton Uni tomorrow for a Science Open Day, but Mj won't go unless we all go as a family and I can't see anyway Aw will be up to going when it comes to it. I would happily take Mj but he at least wants both parents there, but it's too far to leave Aw alone. It is so frustrating. I can't stop crying today. I've had a hard week at work and even though I'm sleeping better because Aw is, I still feel really tired and can't see how this situation is ever going to change.

Hi Just want you to know that YOU PROBABLY DO KNOW BEST!! I was told exactly same thing by School Nurse when Aw was in infants and Mj was in juniors. "Just because you have one child with problems, it doesn't mean you have two". It is only now when Aw is 12 and Mj is 15 that they have had to do something as Aw is paralysed by anxiety and depression and is unable to attend school at all. The school doctor has even said that when she read a report she did on him in 2002 she can't believe she didn't think of Aspergers - although she has now only diagnosed traits of AS. He actually has more problems which affect all our lives much, much more than his brother who undoubtedly and clearly has AS. Relatively recently the NAS website added information about Pathological Demand Avoidance (which I sent to the school doctor but she didn't even comment on it), no doubt in future they will narrow down other AS related conditions which better describe some of our children who do not fit the classic AS diagnosis. We have been attending CAMHS for quite some time and were not getting anywhere, so I wrote a long letter explaining what I felt was 'going wrong' with the sessions and we now have been allocated an actual Psychologist who seems to have a much more detailed understanding of my son's difficulties AND the effect it has on us as a family. So if you are not confident you are getting the help you need, write to the person seeing you and copy it to the Consultant Psychiatrist at your CAMHS. Good luck <'> <'> <'>

Hi My son suffers severe anxiety which is stopping him doing almost everything. I have wondered if hypnotherapy could maybe 'take the edge' off the anxiety and enable him to access other help, such as CBT. Has anyone used this for themselves or their child, or know anyone who has?

Hi Kelly My youngest son has not been to school since May 2008. He suffers from severe anxiety and depression. I have posted under Education title School Phobia/Refusal. I have been surprised as there have been several other people who have had children not going to school. The school makes you feel like your child is the only one in the history of the universe to not go! Our experience was that the school, CAMHS and doctors only focussed on us getting Aw back to school. The doctor wouldn't sign him off sick even when I pointed out that an adult who was that depressed and anxious would be signed off work. No professionals have ever mentioned COOS to us, but maybe there's not one in Hampshire - I'll look into it. Our EWO was a lovely lady with a son with AS, so was very understanding. She said they usually had about 50 children on their books at any one time - that's a lot of children not attending school for many different reasons. She said she would not be looking at prosecution under the circumstances which was a relief to me!! We haven't heard from her in some months now. I hadn't even thought of requesting assessment of my son as older son (who appeared to have more difficulties) has never been assessed, statemented, or even received much help within school. Clare suggested that to me as well and I am looking into this, though not as quick off the mark as you. At the moment we are trying to maintain some contact with Home Tutor sent by the LEA. Online learning failed due to Aw's anxiety. Aw had two good sessions with Home Tutor, then much loved Grandma passed away (24/1/09) and he hasn't been able to face it since. Hoping he'll do half an hour tomorrow. Home Tutor is trying to find out what happens if he can't do that. My eldest son goes to school and my husband works full-time. I work part-time and, I'm afraid to say, I feel very trapped on my days off because Aw is here all the time, I get no time on my own, I feel I can't go out until he is awake so I can tell him and sometimes this has been 1-2pm (after he's been up in the night - meaning I lose sleep). I find it extremely stressful and draining and I'm pretty much 100% in good health. Well done on what you are achieving and good luck with everything. <'> <'> <'>

SIMPLE pleasure of today: Fitting the lid on the laundry basket!!!! (I've had a week off work ) What a great feeling.

Hi In my humble opinion and experience: my eldest son has definite Asperger's Syndrome. He used to have meltdowns. I have had a teacher say to me "he seems to do it deliberately to upset me". I had to explain to her, calmly, that when children misbehave deliberately they do it to get a reaction from other people. My son had absolutely no understanding that his behaviour could affect other people in any way. When he 'misbehaved' they would take him to a separate room where he could read (his ideal situation!). Because he was always fine there, this confirmed to them he was just being 'naughty' in class. My son's behaviour almost always reflects only his inner emotions, not anything to do with anyone else. He used to become a champion wrestler in the shoe shop - when he got old enough to tell us, it was because he was worried they would tickle or hurt him. He was scared of the vacuum cleaner and would climb onto the back of the sofa - again when old enough he said he was worried his toys would get sucked up. So we have found that, on the whole, there was always a good reason (to him) for him losing control. He also used to feel very sorry for himself afterwards. The main thing we have found helped him at home is being very definite and clear that he should go to his room to calm down and not because he was being punished. When he had calmed down we could talk through the situation with him. Eventually he learned to recognised his feelings building and go to his room anyway. Now he is 15 and we rarely have any problems, but when we do we still deal with it the same way. When out and about, I have found that there are several things that come into play. 1. I used to get very tense and anticipate all sorts of trouble especially if we were going with other people. This used to affect my behaviour etc towards him, therefore affecting his emotions and behaviour. 2. He hates unexpected things happening, no matter how good they are. So I have always prepared him verbally for outings and any possible variations that may happen. And calmly talked through each change as it happened. It takes time but it can be worth it. (My mother-in-law once said that I had 'brought him up' to need everything explaining! ) 3. Sometimes my son would mimic behaviour he had seen at school. He would see a child doing something and other children laughing and cheering them on, and would therefore think it was a good thing to do! 4. When going somewhere eg. The Natural History Museum, he EXPECTS to go absolutely everywhere in the building and do everything. Naturally there isn't always enough time on a day out to fully complete everything and this used to really do his head in - never really found a way round this. Even explaining that he cannot do everything before we get there doesn't work. This is still a problem, but he does cope with it better now, he just moans on and on now! On other posts you may also notice that when some children have trouble at school it tends to come out at home/in the school holidays. So worth looking into just in case. Good luck <'> <'> <'>

Thanks Jenrose My son is dx with Severe Anxiety with School Phobia, Depression, Traits of Aspergers Syndrome. No statement, never seen by Educ Psych - but then my 15 yr old with Aspergers dx'd when he was 7 has never seen Ed Psych or had statement ether, always done "well enough" academically and hasn't been disruptive really. The Education Welfare Officer was absolutely super, very understanding. Mind you Aw looked very pale and little and unwell when she came. She had a child with AS herself which helped. She said she wouldn't be suggesting prosecution under the circumstances, don't know how long this will stay the same though. Haven't seen or heard from her in some time. The Home Tutor said he'd phone me today hopefully with some information on what other options there are as Aw is not doing his sessions now. It's such a shame as it went so well until Grandma passed away. Now a few weeks have passed Aw is working really hard on sleeping at the right time and has managed It has never occurred to me to even think about assessment as we never got this for older son even though I requested it in writing from the Junior school - we even did all the paperwork then they denied we ever even had a conversation about it. The secondary school have been brilliant for my eldest and he is getting extra time in his exams and if need be they will 'blow up' his written papers to make it easier for the examiner to read his (improving) writing. Aw got level 5 in Maths, Eng & Science in Yr6 so can't imagine we'd get very far. How did you manage on a day-to-day basis? I work part-time, luckily only up the road and I come home for lunch, but I am not happy leaving him. There have been times when I haven't been able to leave him which leads to strain with certain work colleagues as we are short staffed anyway.

When my eldest son was young we found he would laugh just at that point where playfighting etc started to hurt him. So if he started laughing we learned to stop doing whatever. Now he's 15 and has always walked on tiptoes. When we went to the Chiropracter cos his back was hurting, the Chiro pressed quite hard at the top of his calf in the muscle. Mj laughed out loud. The Chiro was amazed and said that the muscle was so shortened and tight it should have really hurt Mj. Mj said it didn't hurt, just made him laugh. Peversely when my son gets a GOOD surprise without any prior warning, he bursts into tears!! When we had a silence at work for the 9/11 I couldn't bear the silence and standing there with everyone, just hearing their breathing, and I got the giggles and had to leave the room. REALLY EMBARRASSING. I'd been thinking of the people trapped in the wreckage and it was a feeling of extreme emotion - not humour at all. As far as I know I am NT!!

Hi dharma I personally would recommend you find a sympathetic GP at your practice if possible. There is an Adult ASD department at the Maudsley Hospital (see quote from their literature below) - I know because I am a secretary in an Adult Mental Health Team and the Consultants have referred people there. If you sit in the GP's room and refuse to move until a referral is made, hopefully you will get referred. I had to do this to get my son referred as he was always a model child in the GP's room! This is hard to do BUT you must get yourself sorted out and care for yourself otherwise you will be in no position to help your wife and daughter. Sometime you have to take priority for a little while in order to better support them. "The Maudsley Centre for Behavioural Disorders is the only NHS assessment and treatment unit in the country that offers treatment and assessment to adults with Attention Deficit Disorder, autistic spectrum disorders (ASD?s) such as Asperger?s Syndrome, high functioning autism and/or other complex mental health needs." Other points: You may not be incompetent - you may not have been trained adequately. Some people without children can be very dismissive of the demands of having children (even if those children do have severe disabilities). Are you getting DLA or other relevant benefits for your daughter - this may help with the finances if you do have to leave. CAB should definitely be able to help with this. Being miserable at work is awful as it is very difficult not to take it home with you, making the home situation even more difficult. Is there someone - a friend or previous work colleague who can talk through with you the difficulties you are having and what possible options there may be? Please push for some medical help as this should help other people to help you sort out your other problems. There are organisations who help - Advocacy services, The Shaw Trust and no doubt others I am not aware of yet. Good luck <'> <'> <'>

Hi sensay What a lucky child you are going to have! Your child will have you to give them understanding and guidance and insight (even if they do not have the same difficulties). Life can be particularly difficult if you are going along trying to cope and not understanding why you can't. You can give your child information before they get to that stage. Life has changed a lot since you were a child (really, even though it may not seem long ago). If you 'lurk' on here for long you'll probably think it's all still one big battle out there, but let's face it when you were a young child AS probably wasn't really on anyone's mind including the professionals. The fact we have departments and people to do battle with shows how things have changed. I think you are being extremely hard on yourself. You have had a very difficult time. The way I see it AS is a description of a personality. It is not an illness or disability. Maybe you need to stop criticising yourself and try and see what your good points are, cos I bet you have some, and I also bet you have some BECAUSE of your AS. I know my boys do. AS is a gift and if you can learn to be just a little bit more positive about the AS (as seperate from your depression) then you'll be taking a step towards being in a great position to help your son. Also, if your child has AS you will probably get on with them just fine (mostly)! I personally find AS people on the whole very easy to get on with. There aren't all the complicated social things going on and social expectations. So you may well find your child is totally 'normal' to you. If you're child is NT you will be normal to them because that's how you are. Let's face it, all parents can be embarrassing at times, they don't need to have AS for that! Your mental wrangling about this says to me you are a caring person who wants to do a good job as a dad, so give yourself a break and give yourself a chance. There are many REALLY AWFUL parents out there, you don't sound like you'll be one of them. Good luck

However hard a day we all just had, aren't we lucky to have our children here now.

You certainly have a lot to cope with at the moment. It's so hard and just cos you're a mum 'they' expect you to stay calm and cope with everything, but I can tell you I certainly haven't many times. When I have had really bad times I used the Parentline Plus helpline 0808 800 2222. They were brilliant. They listened and in my case they sent some information relevant to my situation/difficulties. I had several phonecalls with them to get me over the worst. Don't despair - even if there's chaos all around you, shut yourself in the toilet and phone them. Website: parentlineplus.org.uk Thinking of you <'> <'> <'>

I remember now - REMEMBERING THINGS !!

I can't remember

Hi I have 2 boys: Mj 15 who is heading for college in Sept to do Engl Lang, History, Geography & Philosophy (not sure he's related to us!!) and Aw 12 who is at present a firm school Refuser. I am happily married and work part-time as a secretary in the NHS. I would not have survived the past 15 years without my husband, but then he couldn't have survived without me either! We thought we were busy before we had children - Haaaaaa! As I try to type this bored Aw keeps coming and sitting looking at the screen so I have to keep minimising it! In the past 5 years we have had 4 major bereavements. We have 2 cats (hope nothing happens to them in the near future ) Mj has great strength of character - when told to F*** off at junior school he would stand his ground and say "I was here first". He has ginger hair and glasses and we fully expected him to get bullied, but apart from some isolated incidents it has not happened. He has subscription to New Scientist and is very bright indeed. He can be annoyingly dense, pedantic and stubborn. He likes Warhammer 40K and MSN and Lego. Aw is a good looking, bright and intelligent child who is very sensitive and creative. He got Mj into imaginative play when they were younger (previously a non-existent concept to Mj), and he has written some brilliant stories (though he thinks we're just saying they're good to make him feel better). He is better than average at Science, English and Maths, but doesn't believe he is. He is severely anxious. He likes computer games, Yu Gi Oh, reading and story writing. I look forward to sharing your frustration, pain, happiness, hopelessness, anger, joy and all those other emotions we go through on a daily basis. <'> <'> <'>

Hi, my youngest son had separation anxiety when young, never liked going to childminder, nursery, playgroup etc. At coffee mornings with friends & kids, he would stand by my leg watching till last 5 mins then decide to play. When started school he had to be peeled off me every day crying. He was actually fine during the day. In Yr2 he was much better, would go in and wave out of window at me. He would not have friends over and would not go to their houses. He hated parties, balloons, noise etc. (though he was pretty noisy himself at home!). Moving into Yr3 (going from Infant School to Juniors in separate building down the road), he lost about 6 friends as they went to different Juniors. Again he had to be taken off me by teacher. One year he had male teacher he really liked and was much better all round and got an award for Most Improved Child, even going up in front of whole school to receive it. In Yr6 - last year at Juniors - everything changed due to new Head Teacher and new rules (she even tried to change After School Club). Things went downhill rapidly. At the same time my mother-in-law also going downhill rapidly with dementia and needed much more help from us. At the end of Yr6 it became difficult to get Aw to school, especially on PE day, so I just sent a note in saying he couldn't do PE for the rest of the time there, and we muddled through. We took my homeless niece in and she slept in our lounge 10 mths & turned out to be a nightmare. She's no longer with us, she's been through a very bad experience and seems to be sorting herself out now. Move to Secondary School was promising, he was looking forward to it, expecting to be treated as much more grown up. For brief time I had blissful experience of two boys trotting off to nearby bus stop and watching them go. It didn't last long. On bus kids would say things to Aw about Mj smelling (severe soap and water avoidance syndrome!). It was also busy and chaotic. Once Aw got on right bus to come home but Mj thought it was wrong bus and was pulling him to get off in front of everybody. Another time bus went the wrong way and didn't go to stop they needed and dropped them off where they didn't know where they were. Luckily Mj had phone and phoned me and I worked out where they were. So I ended up taking Aw even though Mj was still getting bus! Incidents obviously happened in school though it's hard to get out of Aw what exactly. He didn't get on with some teachers, some subjects, etc. and after the first half term it was a struggle to get him to go. We ended up trying to get him there for only science, then only into Pupil Support rather than class. He became very depressed and had suicidal thoughts. He now hasn't been since May 2008. Online learning failed due to anxiety, had 2 really good sessions with home tutor, then mum-in-law passed away a month ago and sleep routine went out of window and low mood and anxiety increased. Anxiety paralysing him, CAMHS previously not entirely helpful, mostly taking about what had been happening in the home environment (not how to help his anxiety, low confidence and non-existent self-esteem), presumably so we could see what we had done wrong and be better at making him go to school. Consultant (who only saw us because we complained about the other member of staff we had been seeing) even said to us "well nobody has died from it" ! ! , although new Psychologist seems more promising. I wondered about hypnotherapy but not sure if good idea with children. He beats himself up for not going to school, not seeing friends - one good friend comes round sometimes. He worries about his education, although at 12 he is better educated than niece aged 17. I don't really know whether school is the problem or his general anxiety, or social anxiety, or what! Aj is in the house all the time, limited eater, no physical activity, gets bored stiff (mostly when really tired). My husband works full-time, I work part-time. And none of us get any time to ourselves at home except him. Any ideas, suggestions, experiences, hope for the future - all welcome.

With my eldest son, my friends all said "he'll do it when he's ready, he'll let you know". This may well be true of some children but not mine! It got to the stage where I was leaving Mj as long as possible, till his nappy was leaking everywhere, thinking he wouldn't want to be like that and would 'make some effort'. Of course he was warm and cosy and couldn't care less. Funny enough he was dry at night by this time. When he was nearly 3 I had my second son and ended up with 5 weeks to toilet train Mj. It seemed like everytime I sat down to breastfeed, Mj would sit on the potty and (as I saw it at the time!) deliberately wee'd over the edge. I was despairing so got a book from library which said to keep calm (!), not make a fuss when wrong thing happens - just sort it out, then praise when right thing happens. It did work even with juggling new baby. Mj went to playgroup trained, however I received a snotty letter after some time stating that he should not attend in 'nappies' and he needed toilet training. I replied pointing out that he was only wearing pull-ups to give him confidence, and if they cared to check anytime they would see he never actually used them. I did get a begrudging apology. My younger son was dry early in the day but we had terrible probs with cleanness and nightime bedwetting. He wouldn't go on the toilet for a long time, then he wouldn't go in his nappy either. He would hang on for days and it was very distressing for us all. He ended up in hospital once due to constipation making him faint and be sick. He had to take lactulose all the time, which I had to hide in his drink. That was OK while he was on orange juice but then he decided he would only drink water - hard to hide anything in that! We moved when he just turned 6. The new house had horrid wooden toilet seats so we replaced them. It was a miracle (nearly). He was so proud to be the first one to use the new toilet seat and from then on he would go, albeit only at bedtime (even if he'd been desperate all day), and it would take him ages. This improved as time went by. He was still wetting the bed aged 7 - he would just sleep through it and not even wake up when wet through. When I woke him and we had to clean him up, change pyjamas, change the bed, he hated it and got very cold and miserable. I tried waking him before we went to bed to go, but he would still wet the bed! Eventually he just got it into his head he wanted to be dry at night and after a couple of false starts he did it. He managed to wake up and go. In hindsight that may well have been the start of his sleeping probs, but you can't have everything! With my boys I have found they will eventually do everything, just later than other kids and often with a lot more fuss. Good luck. <'>