Esty

Bid, just read your reply again and will try to broach the subject again more visually - you are right with the 'talk' thing - he just switches off.

Good points, well made. I have thought of one thing that DOES matter to him (bizarrely, because it involves crowds, chaos and noise) and that is the Download Festival. I took him this year and he really wants to go next year - however, at his age he MUST have an adult with him and no-one else he knows would go apart from me. I told him a couple of days ago that 2 quid will get put in the Download savings jar each day he goes to school - if there's not enough money to buy tickets, we're not going. It must be preying on his mind as he came downstairs before to show me some youtube clips of bands who played this year, so he's been looking for them. I think I'll work out how many days he needs to do for tickets, for a new tent etc and see how many days are left of the school year... I've tried to talk to him about what he needs to make something of himself and earn money but his answer at the moment is that he doesn't care. He knows he needs certain qualifications to be in the RAF and he knows he needs to have so many GCSEs to get into College but his answer is that he doesn't care. I'm sure he does, but he also lacks the imagination and foresight to really think about and understand what life would be like on the dole and that it wouldn't even keep him in cheese and chicken nuggets let alone get internet access...

Thanks everyone for taking the time to read and reply I do think some of you are right, he does exert a certain amount of control over us because when he used to have meltdowns they were vicious. I really don't want to go back to days where he was physically threatening (he's over 6ft), where I had to watch everything as he would take and hide things he thought we needed (purse, glasses etc) to cause maximum disruption. He wouldn't let us sleep or watch TV ('if I can't have what I want, neither can you'). He was horrible to his older brother (they have a more mature and calm relationship now) Our life was hellish. Since he was diagnosed he is much more agreeable to 'deals' (eg you can have a lift if you take the dogs out with me, your friends can come in if you take a shower) etc, before he would scream and yell about being 'bribed' to the extent that at one point I wondered if he had PDD. The problem is, very little matters to him, and what does matter we already use as tools to get the basics accomplished(hygiene etc) When it comes to school refusal, there is NOTHING he values enough to go in. You could offer him one hundred pounds some days and he wouldn't go. Before he was diagnosed we tried sanctions but at one point he had virtually nothing in his room and had no money but still would not go in. He doesn't care about having clean clothes so wouldn't see the need to learn to do laundry etc. I can see that his AS is affecting him at the moment as he doesn't want to do the Cadet's Remembrance parade any more (people watching him!) and he may be realising that the RAF will be too much for him. I spoke to him this morning and his view of the world is that basically he won't do anything he doesn't want to. He will only do things he enjoys. I have explained to him hundreds of times that the world does not work like that, but he basically thinks the rest of us are fools for doing jobs we don't like for money! He has no pocket money when he doesn't go to school, so he is skint but that backfires as then he can't go out with his friends so becomes more isolated and sits in his room - we obviously want to encourage him to be as social as possible. He doesn't become violent any more, he just seems to retreat and refuse to speak if he doesn't like the topic, which is actually more worrying. In answer to points raised: We were involved with CAMHS but they signed us off as he was attending school and had no other issues. I mentioned going back but it's quite clear he will not engage with them at the moment. We do claim DLA but not Carer's Allowance as I do some exam marking infrequently and it would be a nightmare having to keep making fresh claims as it would look like one week I was earning eight hundred quid but then I won't earn again for a few months. He can cope with Air Cadets but that's because he WANTS to. This has always been the most frustrating thing for us - he can overcome his sensory issues sometimes if he wants to but there has to be something in it for him. He doesn't value education even though his Dad and I are both teachers and his brother is a high achiever academically. I think he may also be feeling left behind as all his friends are 2 years older and are in College and he is the last of the group to be left in school. He is very bright and already has a GCSE Maths unit at Grade A (taken two years early) so I don't think he feels in competition or that he cannot live up to his brother, and we have certainly tried to make him see the benefits of education as well as qualifications. He's also let slip that he doesn't choose to stay awake all night, he can't actually sleep, and this is why his eating patterns and sleep patterns are all over the place. Despite apparently being in bed all night, he is still shattered in the morning. I am thinking of looking into melatonin and a SAD lamp perhaps. He is quite out of sync at the moment, not hungry at normal times etc. There's no way on earth we could 'make' him go into school. I can't even think of a way we could try as, like I said nothing matters to him enough. 'You get up now and go to school or.....what?' Nothing you could say would mean anything. This is a child who once didn't go for a day out to the zoo because he threw a crisp packet out of the car and refused to pick it up when I asked. He chose to miss a day out rather than comply. He will cut his nose off to spite his face to a degree you would not think possible! There are no sensory problems at school, no changes of staff, no bullying (it's a group of 6 kids, he's only there for 2 hours and there are no breaks when they are away from the teachers). He just doesn't want to go

My son has Asperger's and was diagnosed two years ago when he was 12 after a period of total school refusal. After a couple of turbulent years where we fought with the LEA, he now has a place in a small support unit with only 6 students in and which only requires him to attend for 2 hours a day, which he has attended mostly successfully for two years now. In times of change, like his grandparents moving house, he will refuse for up to two or three weeks but never has trouble going back. However, since term started in September he has only been in for 6 days. I can see no reason other than it is the start of Yr 10 and the lessons have become a little more structured - whereas before he could work to his own agenda, now he has to do English when they do English etc. I know they would accommodate him doing his own thing if he went in but he says he doesn't want to stand out from the others. We also have the offer of 5 hours of home tuition which could take place anywhere (library, grandparent's house, our house) but he refuses to engage with this as he doesn't want to be 'watched'or have to engage in one-to-one interactions which he finds quite intense. My husband had the threat of redundancy in September which may have affected my son but he now knows that this is no longer a problem.I have not been able to work for three years due to his erratic school attendance so it has a massive impact on us as a family, leaving my husband with the pressure of trying to earn enough for us. My son shows no signs whatsoever of going back to school at the moment and is sleeping and eating at very irregular times, in fact not contributing to family life at all. He does what he wants to do and nothing else, and gets very 'high' (snappy, swearing, name calling) whenever he is asked aything anything about school. He KNOWS he needs to be in and get his qualifications (he wants to join the RAF!) but seems to be unable to do anything on anyone else's terms - I'm positive that as soon as school isn't compulsory he will engage with education but he is wasting these years as he fights needlessly against the system. I think he is quite angry at himself in a way for not being able to get into school when he doesn;t fully understand why himself. he just says he 'can't'. His only structure is that he is in Air Cadets which he loves and will attend regularly and volunteer at weekends eg selling poppies, charity bag packs etc. He talks positively about going to College when he is 16 and about doing a BTEc in Aviation through Cadets. So I have a couple of questions:) I know that some of his problems may be worsened by the usual hormone thing. Do teens with Asperger's go through times when they are more 'Aspie' than others? So, some times they can cope but others they feel better retreating for a while? How long do phases like this last? Do we just wait it out or is that sending him the wrong message? Does anyone reading this have experience of school refusal and can give me some hope that it gets better? I know he will find his own path eventually but it seems like we can't move forward at the moment and the waste of time is so frustrating - he could be getting his qualifications now (he already has a Maths GCSE unit at Grade A from Yr 9)but it feels like he just wants to stay in bed til he is 16!

Thanks so much for these replies - it is so helpful to know we are not alone with this one! Until recently he has been ok about going to the dentist (though hates the feel of the rubber gloves ) but now he sees everything as leading towards (a) making him brush his teeth more and ( getting a brace so he's done what he always does when he feels he's going down a path with a certain goal - he's put the total mockers on it by stopping it in its tracks. We can get him to have a bath (not shower) twice a week only by saying his friend can't come into the house unless he does so but we can't use his poor mate as bartering power for everything! Often J will get the bath but refuse to wash his hair - and he's going through a 'don't want my hair cut' phase so his hair is quite long. His thing at the moment is that he doesn't like his hair to be wet but won't let me dry it with a hair drier as he doesn't like the feel of that either! We've just got back from holiday at a surf mecca in Anglesey and he totally fitted in there with his hippy hairdo and wetsuit Bizarre how he doesn't like clean bath water on his hair but can bodyboard in salt water?! - Tho he did need a long wetsuit as he hated the feel of the seaweed on his legs. Honestly I've cancelled this afternoon's appointment as I choose my battles with J and this one isn't worth fighting if the ortho won't put a brace on him anyway. It's hard to let stuff go though, isn't it, as you feel it's just another situation where he got his own way...although from what people have said he wouldn't cope with the physical side of a brace anyway. Let's hope they invent something else or he can pay for his own 'invisalign' braces when he's older! BTW Expect to see me on Dragon's Den soon with Cheese Flavoured Toothpaste for Kids with Asperger's! That is GENIUS, Manda! Except all the kids would fight over whether it was Primula or Dairylea haha.

My son is 12 and recently diagnosed with Asperger's. Our latest dilemma is that he needs a brace on his teeth (not just a little wonky, he only has one central incisor at the top as his other one didn't come down). Two years ago he had an operation to remove an extra tooth that was lodged in his gum and he coped with that really well. However he refuses to brush his teeth daily (we're lucky if he does it twice a week - ugh!) so the dentist is obviously reluctant to put a brace on in case food gets stuck and rots his teeth. We've tried all kinds of things to get him to brush his teeth (rewards and explaining clearly why he should eg doesn't want painful ugly rotten teeth), but it's as if he can't possibly imagine that scenario as it's not happening now. He has had problems with not liking the taste of toothpaste so he uses a milk teeth one, not perfect but better than nothing. He's seen people with bad teeth and even commented on it himself but doesn't put two and two together and see that could be him- as if it's so far in the future it doesn't matter. I realise it's all part of his Asperger's and not being able to imagine/ visualise but don't know what to do next. He's the same over having baths and wearing clean clothes. Clearly we can't force him to have a brace but he's a good looking lad and we don't want him regretting this when he's older. His incisor is now off centre and the gap getting too small for the other tooth to come through naturally. He looks like he's had a fight and had it knocked out! Having Asperger's, he cares very little for his appearance but still manages to pull off looking cool somehow. He has always gone to his orthodontist appointments reluctantly (with bribes, basically ) and now is refusing to go at all (he has one tomorrow). I don't want to get into a situation where I'm offering him big bribes to go to the orthodontist as if he doesn't brush his teeth it will amount to nothing anyway. He also refused to go to his last appointment with our family dentist. He's not needed treatment apart from his operation so doesn't have a fear of the dentist - he just doesn't see the point. Should I just give up on this one? It totally doesn't bother him having mad teeth!

I have been claiming DLA for my son for a couple of months and get approx £200 per month. I also get Carer's Allowance as I've given up work as a teacher to be at home with him (he's a school refuser, long story). I've just been offered four months part-time supply teaching, only about 1 or 2 days a week. I know this will affect my Carer's Allowance - I'm wondering whether it's worth the extra money to stop and start my claim for this or whether in the long run I'll end up worse off. I will have to get my Mum to look after my son on the days I'm in work, so it's not going to be easy. Does working affect DLA for my son, because there's no way I'm going through re-claiming for that as it's so hard to get in the first place! Thanks for any advice.

Sally44 is right when she says it's often on the good days that we doubt they are 'disabled.' My son has days when he is co-operative and generous and seems thoughtful - on these days if somebody assessed him he would seem ok. However I would invite them to come when he has had a meltdown just because his brother made a chance remark, or he insists I said something or made a promise when I didn't, or is crying because he thinks his brother had longer on the Xbox than he did, or he can't get in the car because 'it smells funny'.......you know the list goes on and on

I totally understand where you are coming from. Two years ago I was a teacher with 9 years experience, a lovely husband and two sons, one of whom presented us with various problems from being what we called 'highly strung' to all out school refusal, violent temper tantrums (as we thought) and a complete lack of feeling towards anyone. Today, I am officially a 'carer' of my 'disabled' 12 year old who has just been diagnosed with Pervasive Developmental Disorder and has his tests for Asperger's next week. I am completely dependent on my husband who is now the sole bread winner, so I claim DLA and CA. Here's how I came to terms with claiming the money (1) I have been paying my taxes all my working life and so have my parents and husband. As my parents put it, they would rather I was claiming this money than people who are just too lazy to get off their arses. (2) My son has been school refusing on and off for 2 years, so hasn't had any formal education. We are desperately trying to get home tutors for him - if we can;t get them through the LEA, then we'll go private - all costs money we haven't got. Days out to educate him cost money, as does his complicated reward system which we need to keep his behaviour level. I need my car to drive him to appointments, back and to to school when he does go (he goes in/ comes home at a different time to his brother.) (3) If the gov weren't giving me this money to look after him, they would probably be paying for a residential special school. (4) We are on a waiting list to see a psychologist through CAMHS - it is going to take another 11 months for us to get to the top of this list. Ed Welfare are breathing down our necks as we have yet to 'prove' there is anything wrong with our son. On Monday we paid a private Ed.Psych over 800 pounds to assess him as we just can't wait another year to start to help our son. Next week she'll need another 800 to finish the assessment and write the report. She is fabulous, and worth every penny but I have paid my NI contributions for many years so why should I have to pay to get my son tested?? HIs DLA is paying for this. (5) No-one else can understand my son like I can, not even his Dad. I can see a high or meltdown coming a mile off and nip it in the bud. My son hasn't attacked us for months because I am here to look after him and make him safe. If anything, Carer's Allowance is a pittance for the job we do as mothers. I was earning more in 2days as a teacher than I do in a month through CA. BTW Totally agree with bid's insight about the denial/ grieving/ acceptance etc. I haven't heard that before and it's so true. If anyone says anything to me (which they haven't, to my face) I would give them a lengthy list of all the things we have tried to do to make my son go to school, what I have to do in a day and also highlight the problems of hidden disabilities. I bet many of those people who are working don't do half in day as we have to do. It IS Right that you are claiming benefits - if it wasn't , they wouldn't give it to you. You have earned it. You have paid for it. I have no problem referring to my son as disabled in an official capacity although I refer to it as ''difficulties' or 'challenges' in front of him. However if calling him disabled is what the government prefer, then this is what we do - their problem, not ours. It's just a word, albeit one with many connotations. Perhaps your Mum is going through her own 'grieving' process as her grandson is not going to do all the things she had dreamed for him? Perhaps she is bothered by the 'stigma' she associates with benefits (again, her problem, not yours)My Mum is very supportive but she still tries to talk about the difficulties he will have with relationships in future etc and I just can't do that right now - I have enough coping with getting him educated and feeling safe and stable. You perhaps need to tell her that 'it is what it is, we would all like to change it, but we can't, and saying negative things doesn't help anyone.' Your trump card (though it would be harsh if it ever got to this) is that you either do this and have a functioning happy son who is alive or you keep the family pride at what price??? You can live with this situation because the alternative isn't an option. It doesn't change who you are, or who your son is, but it does make life a little easier. You don't need the stress of money worries on top of everything else because there's only so much you can cope with and you need to look after yourself. Hope this helps <'>

To cut a long story short, we are looking for an Ed Psych who could carry out dx tests for Asperger's for our 12 year old son after being told it could take up to 18 months through CAMHS. It would make things a lot easier with school if we could find out one way or another (CAMHS key workers think he DOES have AS but hands are tied regarding speeding up tests). We are in North Cheshire and can reach ST Helens, Liverpool, Warrington pretty easily. Has anyone got personal experience of any good Ed Psychs in this area? We are meeting the new one at his school soon and she takes private cases but might be conflicting interests here so if it doesn't work out we will need someone else. Thanks - it shouldn't have to be like this but I'm not waiting til he's in Year 9 to get the backup we need.

It still amazes me that as parents we have to find all this out for ourselves and there is not a common pathway for all SEN kids. It should be 'go to point (a) does it work? Yes - Great. No - go to meeting/ agency B etc It is enough to make me become a politician just to sort this mess out. I got a letter from school today saying there will be a meeting to discuss his education plan which will involve EWO, Ed Psych, CAMHS key worker and deputy head so at last they are taking it seriously and not just palming me off with the attendance officer.! They told me today that the meeting was in direct response to my letter. I am very happy!! I will take the advice and try and get PP there and my husband is coming as well so plenty of witnesses (husband works in College management and will point out institutional failures in an instant). It might speed up diagnosis one way or another as well as the Ed Psych will need to see J before the meeting. I know this particular Ed Psych takes private patients as well so might have a word with her re: that. I actually think this school is the best one for Joe because they have a good Gifted and Talented programme and are very high achieving academically. He just needs actual teachers to teach him in their unit permanently (I don't think he could return to regular lessons due to social anxiety) as well as the lovely TA who works in there and is fantastic with him. We also want tutors for him at home as he finds it impossible to attend full time. I just want the school to acknowledge his SEN and cater for them - they are very good at getting fantastic results out of compliant kids (like J's older brother who is doing extremely well at the school) but they need to stop passing the buck when they get more difficult cases that don't fit their established routine. Will keep you all posted and thanks again for the advice. S

Just sent a fab (even if I say so myself!) letter to the person who wrote the 'PSP' saying we decline to sign it because we don't think it accurately reflects the situation. I've said we need acknowledgement of his additional needs (Social Comm difficulties and giftedness), a proper meeting to discuss an IEP and that I want a named person to deal with and pass on info because, surprise surprise, when I went into yesterday, his mentor hadn't been told ANYTHING about the phonecalls and hoohar on Thursday and Friday. I also said this was to be dealt with by the pupil support unit, senco and teachers NOT the attendance staff. I also outlined WHY he hasn't been diagnosed - not that he necessarily hasn't got AS but that we just don't know because of waiting lists to see the psychologist. And even if he hasn't got full AS he still has most of the traits and this needs support. Feeling much more positive but also crapping myself at what I've started!!

My 12 year old is also a school refuser and had terrible trouble getting up. You can't 'force' them because it does end up getting physical (he used to attack us, barricade himself in his room etc). When we found out these outbursts were panic attacks caused by his severe anxieties about school it made a lot of sense that the ususal tactics would not work. Firstly, we stopped pestering him to get up. It was horrible as we felt he was 'getting away' with something BUT it turned out that the reason he couldn't get up was because (a) he had no reason to ( it reminded him of school © he was so anxoius about sleeping at night (bad dreams, mind racing etc) that he was genuinely tired in the morning. Now, amazingly, he is back at school part time. He is allowed to stay in bed while his brother gets up and I only wake him once I've got back from dropping his brother off. He does cut it very fine though as he is willing to forego brushing teeth/ hair, getting breakfast etc but you have to choose your battles. I had to accept he was going to school like a dirty scruff because he was actually going to school!! Two things we did, but one might not be practical!! Firstly, we stopped rewarding him with money and started using points. for some reason this worked for him - previously he would think ''ah well, I've lost 20p but I've stayed in bed, no worries''. Now he can only get things by earning points - these translate directly to money but he feels less 'bribed' so more co-operative. He can earn 100 points per day, an extra fifty if he goes to school. He never sees actual money - he works out how many points and we buy something for that amount. If he doesn'tchange his underpants he loses 10 points, same for not doing teeth. He can't get these points back by being good later. It has taken a while but we have stuck with it. When he realised if he'd have brushed his teeth on all those days he would have got an extra Warhammer thing, it started to add up for him. The other thing was addressing why he wouldn't sleep and this is less practical depending on your circumstances!! We have two six month old pups who until recently always slept in a crate downstairs. Then they started objecting to being in the crate and I didn't want them in with me. They now sleep in my son's bed and the result is amazing. he will turn the light off at a reasonable time ''so the dogs can sleep'', he is less fidgety, doesn't object to going to bed and has even started listening to music or audiobooks at night intead of watching TV. He is so relaxed we can't believe it, because he feels safe with the dogs there. Obviously I wouldn't recommend doing this with young kids or aggressive breeds/ problem dogs. J didn't realise himself he was anxious about bedtime, it just came out in his behaviour. When the dogs get up, J wakes up naturally. The other benefit is that before he wasn't getting any exercise but because he will come out with the dogs he is getting physically tired and so sleeps better at night. Like I said, not a cheap or practical option but it worked for us. As others have said, they act like they want control but they want someone to sort it out for them. J has completely stopped being physically violent because he realised it didn't work, but it was horrible for ages. I had days where I had to stand in front of the TV stopping him from turning it on because he had a sanction. He would physically attack me and of course it meant I couldn't do anything either. He's hidden things of ours (I found my keys behind his wardrobe after ''losing them'' months before..) My husband has driven to work with the PS, Xbox and DVD player in the boot so he couldn't get them! It takes them a while but they do eventually get it. Of course my son needs careful management otherwise these things would surface again but for the moment I feel we might be making progress and I'm sure your son will too.

Thanks again. He's fairly happy going to school unit for his two/three set days for a couple of hours although he does have a motivating reward system The problem is that at the moment he doesn't get any provision for being gifted and the school are still acting like I'm making it up that he has social communication difficulties. My lovely CAMHS worker rang the school this morning to put them straight and ask about G and T - the attendance officer on the phone said, 'why, is he clever?' Mmm yes well he is gifted in maths and has a reading age 4 years above his chronological age....so maybe a bit clever!! The school officer kept saying 'mum says he has Asperger's and he doesn't because he doesn't have a diagnosis' as if I am making it up!!! CAMHS worker said ''he may well have AS (we only don't know because there's a waiting list) but he definitely does have social communication and you (the school) had better write him an IEP which addresses that.'' So hopefully we are getting somewhere. Also been advised to get in touch with the gifted and talented society as they may be able to help.

Fantastic advice from both of you. Sometimes as parents we are made to feel so awkward and militant that it makes you feel horrible for having to do it but you are right - we are in situations that make us have to be very strong and if some people don't like that, then they don't have our children's interests at heart. In particular my EWO only wants bums on seats - she thinks that school = education and as a teacher I know you can't get further from the truth. Sometimes the last place you need to be for the right education is a mainstream school that fouses everything on exam results. I am going into school this morning to get answers or at least a date for a meeting that involves teachers rather than EWOs and attendance officers. Thanks again