KarenT

Do you know, I don't think I got my invitation to join the group. Must have been some reason why I didn't pursue it at the time. Cat, if you're still doing the group, can you give us an update and some info on how we can join? Thanks Karen x

Sorry for delay in replying - busy day yesterday and I didn't get on the computer. Kazzen - yes, we break tasks down - sometimes it helps and sometimes not. And we plan in advance to introduce new ones and how he'll go about it, what the rewards and consequences will be etc, set SMART goals to help him manage. The problem at present is that he USED to work well with this but lately he appears to be setting out to scupper it for himself by non-cooperation and defiance. It's almost like his need for control in the situation is greater than his desire for the reward that goes with accomplishment, iykwim. Minimal prompting too. We use code words in public so that we don't have to get involved in a potentially embarrassing discussion about expectations but he's no longer responding (consistently) to that either. Have tried recording tv programmes but it minimises the impact (in fact he tried to negotiate that for Gadget Show last night). To him that means there has been no consquence for his behaviour as the reward is still there for later. He grumbled mildly last night about Gadget Show then went off to bed at 8pm while we watched it - perfectly accepting of the fairness of it. Actually, an outsider would probably think he's testing the boundaries and is unsure of them, hence he keeps pushing me to keep drawing that line. But the reality is that we've had consistent boundaries in place since he was very young, No has always meant No and I always carry out any threats I make if a behaviour persists. Realistically he should know by now, at 11, that the boundary is always there and isn't flexible, but he seems to have an unsatisfied need to keep challenging it. I really don't know how to tackle that other than keep on going and hope that one day (perhaps when he's 35 ) he'll get the message. Thanks for your reply, Sally. J no longer has the explosive rages that used to go with not cooperating and failing to manipulate me to get his own way, and I sympathise that you're still going through this stage with your son - it's exhausting . We've done loads of anger management work over the years and coming out of school was the final piece in the jigsaw as far as that was concerned - with those massive stressors removed he could focus on managing his anger better and it's a good six months since he had a major blow-out. We don't even get any abuse any more, which is a blessing. But yes, that was part of the problem for many years. Your cubs group sounds wonderful - you're very lucky to have it (J's karate club is similar, very supportive). J has lots of social groups and is doing much better at them (and can be involved in more of them) since coming out of school. At swimming for example he's no different to any of the other children, which is wonderful to see after all these years! Doing well at karate too, enjoys mixing with other children in both groups and manages it well. Interestingly, his worst experiences in clubs have been with those supposedly for SN children, where we've found staff (contrary to your own positive experiences) very ill-equipped to deal with the children in their care. I removed J from one such club around October last year after I caught the play leader literally screaming into J's face that he must take part in the unplanned but much hated activity they'd arranged for everyone (dance) because HE was in charge and J should do as he was told. Actually, J manages better in more mainstream settings these days, which is fortunate if that's all that's on offer around here as an alternative. The current problem is definitely one of a battle of wills between J and me, though having reflected on Jsmum's reply I think medication may be an issue here too - thanks Jsmum! His dosage/brand changed in early January and I think he perhaps hasn't settled into it as well as he might have, so will contact the consultant and see what he suggests. Very many thanks for input on this, always much appreciated. Karen x

Thanks for replying joybed. Not negative at all, just realistic about the support available, and I'm very sorry you've had such a difficult time accessing it for your son. Totally take what you're saying about tackling it sooner rather than later, which is why I was asking for advice now. We are dealing with it, on a day to day, plugging away basis, but it's incredibly hard work (as I'm sure you'll agree). J may attempt to manipulate us but he doesn't manage it - we are very firm with him and as the adults in the household what we say goes, whether he likes that or not. Hopefully in the long term that will bring benefits, it's just a bit of a pain while it's happening. I was hoping that other parents who'd gone through similar stages with their pre-teens might have something to suggest that I'm not already doing so I'll be grateful for any suggestions. We need all the options we can get so that I can have a few things up my sleeve for the future. J is taking Equasym (methylphenidate), another brand of Ritalin. Like your son, J was refused medication by our CAMHS and we had to go private for a thorough assessment. CAMHS haven't contacted us for 15 months although we're supposed to have yearly reviews. They never attended school review meetings (though to be fair, the schools always 'forgot' to invite them) and I have reason to believe that J has been discharged without formal notification. Can't say I'm that bothered as they've been particularly useless in our case - we manage far better since we've been out of the system than we ever did in it. The stress of dealing with inept professionals was incredibly wearing. J's private consultant has been involved in research which suggests that many children with ASDs also have considerable symptoms of ADHD, which could be helped by medication but isn't being prescribed without a formal ADHD dx. This would account for CAMHS refusal to medicate J or even consider a trial. Knowing the lengths we've gone to with behaviour management strategies over the years I've always known that there was a limit to what J could achieve on management alone, and medication has proved to be highly beneficial for him. Of course there are still issues - it's not a magic bullet - but his concentration and focus for example are much improved. Even his cooperation is better than it was, in some ways such as academic work. I appreciate your taking the time to respond and I hope you manage to access some support for your son soon. Karen x

Yes, all of the above! Consequences vary, most are instant but often the 'instant' ones aren't the most powerful, iykwim. He's very tv motivated so having work to earn Gadget Show, Top Gear and others has been effective in the past, though sometimes it isn't (it all sounds so familiar, doesn't it ). He is pretty in tune with his AS and understands his difficulties well (more so since coming out of school and being sufficiently unstressed to process it all). I think you're right about going over and over it repeatedly, which is what we do. We have a regular Sunday night slot (and sometimes at other times too) to talk about 'stuff' and how we can work together to support him. It's at these times that I see how well he understands the theory of working together but it's hard for him to achieve 'in the moment'. At the same time, he's made massive progress in the last year or so, so perhaps I'm expecting more from him than he can cope with at the moment, although I don't want to let him have more control than is acceptable for both of us. I think all the strategies we use are appropriate but sometimes (as we all know) it can take months if not years to see constent and concrete progress, and sometimes there can be several backward steps for no explicable reason. I guess I'll just have to keep banging away on this one till the penny finally drops. And of course the hormone issue is going to get worse before it gets better, joy of joys Thanks for your input Tally, much appreciated. Karen x

Hi Jsmum I agree, most likely hormones. Haven't noticed any courses doing the rounds for teens and am on all the mailing lists, but will keep a look out. Nothing seems to be worrying him - we talk regularly and he tells me if there is. He's home educated so nothing going on in school (or elsewhere) that I wouldn't know about. He is due for a meds review in March so will talk about it then, though I doubt it's that if the problems aren't consistent iykwim - I'd expect he'd be uncooperative more (if not all) of the time if it were the drugs. Routines are good, plus he's getting more used to handling changes and spontaneity. We have a good balance between work and leisure too, with lots of social stuff. Generally he's a happy chappy these days I take what you say about your son manipulating when he feels he hasn't any. Not sure this applies here; we negotiate and agree most things in advance but lately J will go back on the agreement and try to change the existing plan. Avoidance seems to have become an intermittent bad habit, and he'll avoid just for the sake of it, to have control over a decision he perceives to have been made by me. Desire for independence is at the root of it, tbh. He craves it and can see that he'll get it quicker if he cooperates with adults helping him to become independent, but he's determined he can do everything on on his own. But in reality he can't, and causes a lot of problems for himself by attempting to tackle situations that are beyond him before he's ready. Reward and consequence is a daily feature of our lives! He's currently delighted that the Gadget Show is back on tv but has already lost Monday's programme due to behaviour earlier in the week, though I've given him the opportunity to earn it back. But he's still avoiding and manipulating and not cooperating with everyday requests. His need to be in control seems greater than his need for Gadget Show. At times like this I feel like I'm taking everything away from him but without any change, which leaves me feeling a bit helpless. Thanks for your advice. Will see what else I can do but I think this might be one of those that I have to ride through and come out the other side. Karen x

Any tips on how to motivate an uncooperative and (potentially) manipulative pre-teen? I say 'potentially' because in reality I'm not half as thick as he'd like to think I am so he doesn't wind me round his finger as much as he'd like, but I suspect his efforts will continue. J is 11 with AS, has in the past always responded well to reward and consequence strategies, but lately is fighting off any attempt to support him. He is desperate to be independent, acknowledges that he'll gain that independence faster if he lets someone help him achieve it but finds it hard in practice to accept that help. It's getting very frustrating, because all the things I'm trying to help him with I know he's capable of but I just can't get him to cooperate. There are aspects that are genuine problems eg distraction, focus, forgetfulness, fidgetiness and disorganisation etc, but we try to work around these things and use aids to help him. Medication has helped a lot to calm some of these things down. I feel that part of the problem is hormonal changes, but that doesn't give him the excuse to take charge of situations me as he seems to think he can. He knows I am here to support and guide him in any way necessary but that I can't wave a magic wand and make his problems go away - he has to be the one who takes that guidance and does the work himself. Without working in partnership my efforts are pointless. I have to add that he's not always like this. Some days we have a lovely time with J going out of his way to help himself and make positive choices, with pleasing results for all cocnerned. This is what I find so frustrating. We both agree that it's nicer this way but on the days/times when he's acting up I can't get him to realise the mess he's making 'in the moment' and rethink his choices. We get stuck in a rut till the next time he decides to behave well again. Any thoughts, o wise ones? Karen x

DWP seem to refuse at first application as a matter of course - they did with my own initial application for IB and J's for DLA. It's almost as if they're seeing how serious you are about claiming Next step is to request reconsideration. Send in some additional information if you can (you can ask for copies of their documents and make a decision as to what you think could help your case) such as reports from friends, additional doctors or consultants - anyone who can vouch for the difficulties DP has in daily life. A friend of mine once got the chap who ran the corner shop to write about her going in with her walking stick (she has ME/CFS) and that helped her claim. From what I hear, a lot of claims are accepted at reconsideration stage without having to go to appeal. Worth a try. Good luck Karen x

I think it depends on what's meant by 'culture of blame'. Two possibilities spring to mind: 1. That people seek to apportion blame somewhere, anywhere, rather than looking to what they can do to resolve a problem (personal responsibility) 2. That the forum is perpetuating an opinion that 'the system' is always at fault and we should all be against them. On the whole, I personally don't believe that either is true on this forum. I do believe that many of the people who come here have had dreadful experiences with statutory services and will naturally want to air their grievances as to how they and their children have been let down, and it seems that those experiences outweigh the positives especially when it comes to support in schools. It would seem obvious that there would be more posts about negatives in that case, but I don't think that represents a 'culture of blame'. My rule of thumb would be justification - if families have genuinenly been let down and children mistreated by services intended to provide support, then that blame is valid. I'm sure those families would much rather be posting favourably about the wonderful service they've had but sadly that's not their experience. I don't think it's wrong of people to post when things have gone badly wrong for them, especially when it's clear that they've cooperated with professionals and have tried their very best to work in partnership for their children's welfare, with little or no success. However, I do think it can be difficult for some posters who've largely had positive experiences of the system (and by that,I mean those who've had to fight for support, diagnosis and recognition, not that they've had them handed on a plate) to fully comprehend the horrors that others have gone through. And I can see that to those posters it could seem that people are exaggerating, being unreasonable, apportioning undue blame to the services. For myself, I often feel I must have been mistaken about all the dreadful things that happened to J during his time in school, and surely I can't possibly have been openly lied to by schools, LEAs, doctors etc etc - but sadly it's all true, it really happened. The sad fact is, sometimes the blame for our children actually does land at the feet of the professionals, and I don't think their parents should be harshly criticised for being angry about it. For the record, bid, I totally agree with you that it's not unreasonable to expect a child to have access to the services they've been promised and should be entitled to. What I object to is that those promises are often worth nothing and are made with no intention to deliver. It's no surprise people get so angry at having to fight to have them fulfilled. Karen x

Agree, pain on writing is a big part of the problem. We've been working on applying less pressure and it's showing some improvement, but the hard part is getting our kids motivated enough to try a lighter touch and see the benefits, and want to keep trying. Tough call when years of discomfort have made them very reluctant to even attempt it. Karen x

We've had handwriting problems for years - something else that schools ignored Have been doing practice exercises for the past four months or so. I make worksheets by copying and pasting Bionicles info from the internet, changing the font to a script style and putting together double rows of lines on the page for J to write on. Using a topic of interest really helps with engaging with the task. We also use a slope - just a ring binder turned sideways as sometimes that's enough. You can experiment with lever arch files etc and different thicknesses till you get a comfortable slope to work on. As others have said, though, the writing exercises are often fine but the problem is with generalising to everyday writing. J still has to use the computer for longer written work and often his writing is still poor when giving single sentence answers on worksheets. I just encourage better everyday writing by linking into his reward system, eg he has a job list to complete throughout the day and gets pocket money depending on how many items are on the list - if it's illegible I don't pay This http://www.bookdepository.co.uk/book/97814...econdary-School was a good book that gave me some insight. Karen x

How long is a piece of string? I think they just make up these numbers, tbh, and I'm not sure he's 'entitled to anything'. The only way you can guarantee input is by a statement, and that's often very patchy. My son was on SA+ for four years (two of them with dx) and didn't get any additional input apart from a handful of highly ineffective social skills classes. It very much depends on the school - sometimes they just take the additional budget for SA+ but don't do what they're supposed to with it. The voice of experience, I'm afraid Karen x

School Action means the child has been identified as having additional needs that can be met with usual school resources. School Action Plus means the additional needs require further input from an agency outside of school, which could be Autism Outreach, SALT or other professional. Karen x

Until about five years ago I used to cry in confrontation (or come very close to it, and back away from the issue to avoid making a fool of myself, thus it wouldn't get resolved). I'm 49 and NT. You're right, it's an inappropriate response to cry in such circumstances but I'd be wary of drawing the conclusion that it's directly linked with emotional issues associated with ASD. In my case it was immaturity, lack of confidence and lack of practice at dealing with such situations (not helped by avoiding them in case I cried ). In time I've learned how to deal with confrontation and be assertive enough to manage it. It's not true that 'neurotypical people would voice their feelings' because very often they're experiencing the same difficulties in expressing themselves as you are. I'm not sure what to suggest in terms of practical solutions - for me it came with practice and a need to stand my ground for the sake of my son - but just wanted to let you know that you're not alone and it's not necessarily an ASD thing. Karen x

Agree with using games to make food fun. A couple of years ago I got J to eat a variety of greens by playing 'herbivorous dinosaurs' on the dining room floor. We made ourselves dens and laid a blanket on the floor, and piles of lettuce, kale, rocket, cucumber etc that we had to claim as our food source (which involved lots of baring of teeth and growling at each other). He particularly enjoyed the fact that on this occasion he was allowed to eat like an animal by picking it up in his teeth (though I did draw the line at urinating on the food as a sign of ownership ). Some of those foods he tasted once and has never tried again, but others have become part of his routine food repertoire which is a success in my book. We went on to repeat the exercise as carnivores with a variety of cooked meats, with the same results. 5-point scales worked really well to help J learn not to label foods as Loved or Hated. He learned degrees of OK-ness and has accepted now that food doesn't have to be an all-time favourite for him to tolerate eating it. This has widened his range a lot. One other thing we did was to pick a few foods at a time to work on and have a chart to show his progress. We'd start by tolerating the new food on his plate, moving on to touching it, smelling it, licking it and so on until he was able to eat a piece and enjoy it. Only one new food on his plate at a time, sometimes balanced with a favourite for encouragement. I have even used financial motivation and paid him to try some foods, which has worked often. There are loads of things you can try, but it would be good if you can get away from feeling guity about widening his choices. Give him lots of rewards for at least trying and that will outweigh any anxiety he might feel about the newness of it. However, I would agree that it's not a good idea to forced anything, food or otherwise. Take it in small steps if you want to see results. Karen x

Oh well done , that's fantastic news! I passed two years ago and it's totally changed my life. Everything is so much easier when you have wheels Give yourself a huge pat on the back because it's a great achievement. You should be very proud of yourself. Karen x

Dreadful news. Thinking of you, and your friend. Karen x

Those Help2 seminars are excellent - really pleased you found it useful. Personally it changed my family's whole outlook and the way we supported J generally. The Help2 seminar on Social Stories is very good too, much better than Carole Gray's complicated method, IMO. Karen x

I think we'd all like to assume that school records get passed from one school to another when requested but it seems it isn't always the case. I found out that there was nothing transferred when my son changed schools, and all that the new school had was what I had given them (and they didn't bother to read that either). I never did get my son's school records, other than his attendance and a sheet giving his projected targets for end of Y5. There were even errors on those. I asked the EWO Manager to pursue the school and find out how to get hold of them. The last communication I got said I already had them - It was then that I knew there was no point in continuing as they were now in a position to deny they still had them. I know the school has destroyed the records because I believe his workbooks would have shown evidence that he wasn't doing as well as they'd claimed. Around that time I also got copies of his medical records and documents relating to his statement application - they might as well have been written by Hans Christian Andersen for all the truth that was in them - they paint a very different picture of my son and family to the reality. What a waste of time and effort. I've decided not to bother looking for more documents and to focus my attentions on J's development instead. For the record, he's thriving now in home education and I wish I'd done it years ago. We have a very happy life and our collective stress levels have plummetted Good luck on your journey Karen x

jlogan1 - I had the same problem with J and homework, he just dug his heels in and it was very distressing for all concerned trying to get him to produce anything. However I now realise that was because he was all 'schooled-out' after a full day and he simply couldn't take any more. That no longer happens because the pressure is lifted - if he's over-stressed we leave work until later. But the main thing is that he's very rarely that stressed anyway now because it was school that was causing the anxieties in the first place. Stress doesn't have the chance to build up because I'm there to spot it brewing and help him self-manage, a level of support that he's never benefited from in his five yearss at school. He's learning how to recognise these signs for himself and his self control has improved too. With HE you can pace your days and weeks as you see fit, and according to what suits your child's preferences, needs and abilities. Right now I'm working mainly on developing J's writing skills and not really placing too much emphasis on other things at the moment in terms of output, because that's where he's been most lacking. That's not to say that we don't encourage learning in other subjects, just that I don't insist he writes about it because that's where the main challenge is. You don't teach a child to swim by persistently dunking them in the deep end - you have to give them a chance to breathe. You mentioned your daughter's interest in Twilight and that you can't get her to do anything but that. So why not focus on that? We have the same recurring obsessive interests and just now it's Star Wars, so J is now writing historical stories based on Clone Troopers going back in time. It may be Star Wars based but he's producing some lovely work, and his writing skills are coming on very well as a result of having this freedom to choose a subject that inspires him. This is the boy who couldn't hand-write more than a page and a half, and that with a huge amount of anxiety and coaxing. I want to stress again that this is working FOR US and I absolutely accept that it may not be for everyone, but the fact is that you don't know until you try for yourself. Oh, and for the record, monitoring is not as severe as some may think, at least at this stage. There are proposals being considered for changing the way HE is monitored but there's some doubt as to how much will change because it looks lilke being a costly exercise. For now parents can choose to educate their children in whatever style they think suits best, and you don't even have to produce much in the way of evidence. Education Otherwise publish an excellent guide to the legal rights and responsibilities of HE called School Is Not Compulsory, which is well worth a read. Karen x

Hi mandapanda, and welcome aboard the good ship Home Education! I think you've made a wise decision - there is only so much support available in mainstream schools and fighting to access it is tough, especially if (as with us) you have little confidence in it being provided. It's hard watching your child suffer while you wait for the LEA to get its backside in gear It's our one-year anniversary of starting home ed this Wednesday and it's been a rocky journey, but my only regret is that I didn't take the plunge earlier. J has thrived and learned far more than he ever did in school, and has made loads of new friends - he copes better socially because he's not forced into difficult situations for six hours each day without a break. He's calm and happy, which is wonderful. I truly wish you well in your venture and I think you'll enjoy it, though it's definitely hard work! I'm glad you already have some support from your HE friend. If you haven't done so already you might want to consider joining Education Otherwise and finding out about local arrangements for classes and social opportunities. HE Special is a useful forum too. Very pleased you've made the leap Karen x

That's good news, bid. How is she doing generally? Has her mood picked up at all? Are you coping OK? Karen x

Can't bear either of them and would rather stick pins in my eyes, to be honest However, Saturday night is movie night chez Thirlaway and we plumped for The Simpsons Movie - a delight every time We're still laughing, ackshully. And Green and Black's ice cream for pud. A perfect evening! Karen x

Hi. Sorry it's taken me a while to get back to you, it's been a hectic few days. Thanks for your comments, both are much appreciated . While I agree that it's not necessary to write everything down to demonstrate learning, it's still true to say that this is the method that inspectors will use to determine whether 'suitable' education' is taking place. As we know, this is a bit of a hot potato at the moment and I feel I have to bear it in mind. When J was deregistered there was little formal acknowledgement of the extent of his difficulties (on paper at least), though they were clearly mounting. He's had very little support while at school and none whatsoever in the classroom (we removed him before they became too evident), no Ed Psych involved (it's a very long story of avoidance and delay, even neglect), statutory assessment repeatedly refused. He was expected to achieve highly in KS2 SATs which he would have taken next May had he still been in school, and I feel I have to demonstrate to the inspectors that he's still performing in that region when they next visit. Ok, I may appear over-anxious but I did have EWOs threaten me with child protection investigation merely for taking him out of school in the first place, so I feel I have to tread carefully with them. That said, I'm not driven solely by the need to please the inspectors - far from it. My main focus is J's happiness and emotional state. However, much as I would love to believe that the world will accept J into its arms without formal qualifications I think it's unlikely, and at so me point he'll have to take exams and will have to be able to write reasonably well to do so. Also, the way questions are phrased these days, he'll have to develop an ability to express opinions and feelings, and understand abstracts. I'm not forcing him to write about things he doesn't know or isn't interested in (History in particular is a favourite subject), but I am aware from keeping a weather eye on the National Curriculum that this is the level of work he'd be given if he was still in school. I actually believe that had J had the right support for his autism he'd have been able to keep pace with the curriculum requirements. I believe that he has the ability to develop the necessary skills but at this stage I'm not sure how to encourage him, which is why I asked for advice. Sarina - yes, we use the computer for most written work now (he isn't keen on handwriting either!) but I also agree with Mum of 3 that handwriting is still seen as important in today's world. I encourage him to write about his special interests (stories, write-ups of activities etc) but I also want him to accept that as his education progresses he'll have to write about things that don't interest him much - he won't be able to pick and choose. I don't feel it's fair to him if I let him expect that life will always go his way, and he does have to learn flexibility. As Mum of 3 says, I want J to have his place in society and I think there are certain skills I need to teach him in order for that to happen. Thanks again for your viewpoints. Those links were very helpful and have given food for thought. Other comments have helped convince me that the way I'm doing things at present is probably the best way forward. Thanks for that reassurance Karen x

Thanks Mum of 3 , I've printed those pages off to look at later. I believe this is something that can be helped by SALT too, and we're investigating a therapist now for more advice. Karen x

Jis nearly 11 with AS, and has been home educated since last October. He's very bright and knowledgeable but has always struggled with output. He isn't comfortable with handwriting (though that's improving since he's been HE'd) but I'm struggling to get anything from him where personal opinion is concerned. For example, questions like "Choose a Tudor monarch and say why you like them" - he just doesn't seem able to express any thought on such things. Also, "Think of six questions you would ask X" leaves him cold - he's quite content with how much he's found out and has no interest in asking for more, so doesn't see the point in asking. Subjects such as maths and science are far easier for him, I think it's because the answers are definite, either right or wrong, but with literacy etc there's margin for personal opinion and flexibility. He can't cope with that, and is afraid of getting it wrong. In my day comprehension was much more straightforward - you read the question and scanned the text for the answer, and it was clear to identify - but nowadays there always seems to be an emotional slant to the question, eg "Why do you think such-and-such happened?", or "How would you feel if...", which is not very AS friendly. Does anyone have any tips for developing his ability to answer questions like this and getting something on to paper? For the record, he had the same problems in school but they were skirted around and never addressed, he never had classroom support and pretty much muddled through (which is partly why we're home edding now). All views gratefully received . Karen x