cmuir

Hi I took my son to see it and unfortunately there's a sad bit in it. Poor R sat and sobbed. Dont' want to say too much about it, but a lovely character dies. I'm not convinced that actually added anything to the storyline and seemed unnecessary to me (probably because I had to console kiddo!). C.

Hi Best of luck with your date. Guess onlya dvice I would offer is to try and be yourself. Dates are nerve-wracking and there's no getting away from that. Though, perhaps of some comfort, it's likely he'll be just as nervous too. Caroline.

Hi CAMHS offered my son sessions with an OT/play therapy. I was pretty sceptical, but have to say she was able to report back her findings which mirrored mine. It gave R a chance to talk and, with help, identify his feelings about friendships, school, himself, etc. In addition, it meant a great deal to me to have a professional believe me and know that what I've said was all true. I thinks it's helped formulate a long-term plan and means that there's now mutual trust. Could that be worth exploring? Caroline.

Hi I can't recommend this book highly enough. I purchased it just over 5 years ago, at a time when I was utterly desperate in terms of trying to work out why my son behaved the way that he did. There was one particular chapter that I could have written word for word myself. I bought lots of books (eg various Jackson books), but this particular book was the only one which I feel was the most informative. The author tells it like it is - if memory serves me correctly, she adopted 3 kids whom all turned out to have an ASD. I felt she gives an honest and frank account of the difficulties that she encountered and how she overcame these issues (healthcare/education). She doesn't come across as superwoman, but rather as a loving desperate parent who wants the best for her kids. I'd go as far as to say that this book was inspiring and gave me the certaintly (there was so much that I could relate to my son) that I needed to pursue answers/diagnosis. Caroline.

Hi I've been in the same situation many times with my son. Frankly, it disgusts me that adults behave in such a way. I would think highly of someone who actually approach me and said 'kiddo is having a birthday party, do you think R would manage, and if so, could you stay with him?'. I can understand parents concerns (however, exclusion, particularly in mainstream schools, where it's supposed to be about inclusion!) and can see their other side of the coin, so to speak. Sadly, other parents often don't see our side of the coin. It's a difficult one. I recall a real turning point for me when my son was 4.5 and had just started P1. His behaviour was extremely challenging and unfortunately most knew it. One morning, I put the wrong polo shirt on him (not the yellow school embroidered badge one, but one from a dept store to act as a laundry/backup). Kiddo said nothing until we were at school and the bell had rang. All kids stood in line except R who shouted that he'd wished I was dead. Of course, the other mums stood seemingly enjoying the 'entertainment' (the same ones I'd heard saying that I was a soft touch and kiddo needed a bit of discipline, etc etc). A teacher came over and said that it must be upsetting for me hearing that. In a loud voice, I responded saying that R has Aspergers and was upset about his polo shirt, but what was most upsetting and disgraceful was the gossip brigage standing watching enjoying the entertainment'. At that, they dispersed quickly. Have to say that was a real turning point - I simply stopped caring what others think and concentrated on the one that matters, and I guess that's the moral of that long-winded story. In a way, it's good that you'll hopefully be in the same boat as the other kid's mum and it may be possible to strike up a friendship or understanding, eg invite them around to play/cuppa. It's still hurtful though. I guess only advice I can give is to remain dignified at all times (it's easy when you're upset to say or act in a manner in which you wouldn't normally) - in other words, show the other mums you're a decent human being. I've found and come to accept over the years that some parents have to a point becoming more understanding, however, there are some that simply don't think their little angels should be mixing with ASD kids. It might be worth speaking to the school and perhaps ask them what their thoughts are on ways to increase awareness of ASDs with the aim being to take remove the unknown element. In most instances, I'd bet that some parents don't mean to be hurtful and that it's actually more about their lack of knowledge and understanding. There have been occasions whereby I've invited a parent and kid over to the house and stipulated a time limit (anymore than 1.5 hrs can be too much for R). Sadly, there's no easy solution and depends on the individuals concerned. Best wishes. Caroline.

This article in today's daily mail online makes interesting reading. It's about a little girl who has a rare genetic disorder which makes her like Jekyll and Hyde. Article states that some children are thought to have been wrongly diagnosed with Autism. http://www.dailymail.co.uk/health/article-1329618/The-little-girl-violent-genetic-disorder-makes-real-life-Jekyll-Hyde.html http://en.wikipedia.org/wiki/Smith-Magenis_syndrome#Diagnosis Caroline.

Hi As someone else has already said, as far as I'm aware DLA is not means-tested. My husband and I are in receipt of DLA for my 9 year old son, when we haven't qualified for anything else because we both work full-time. Caroline.

Hi Does anyone know what a Tier 4 CAMHS assessment is or involves? I appreciate this may vary from region to region. Thanks. Caroline.

Hi Thanks for your insightful response. I can see where you're coming from. Caroline.

He's never done this before. He's was fully aware that he's to be respectful of others people's things particularly if they cost a lot of money. Trust and responsibility is something that has to be earned which he did and so was allowed to play a game. In the four years I've had the computer (it has to be an apple because my profession dictates apples are industry-standard and I simply don't have the money to buy a much cheaper PC second-hand or otherwise), R has never misued it. Still, lesson learnt for me.

Hi My little angel was on my laptop playing a game, got frustrated and battered the screen ... and smashed it. It's an apple macbook pro - £2k worth! Got IT guys at my work to look at it and the cost of replacing the screen simply isn't worth the bother (£900 +). Kiddo denies having done anything other than touching a button, but the look on his face says otherwise. Also, he repeatedly either hits himself, hubby, me and frequently his/punches his DS lite screen. I'm beyond being angry. Just feel like he's given me yet another example of how bad his behaviour can be. So, now I know why NAS keep sending me insurance cover leaflets, etc. Sure as heck can't tell my insurance company that kiddo battered it. This sounds bad, but I want kiddo to realise what he's done both in terms of monetary value and implications (i.e. no computer to play games, etc). Also, just discovered that I have heart problems - can't think why!!! C.

Hi I can see where you're coming from, but I don't think it's clear cut. My son is under the wing of CAMHS and they've tried to drill into me that I should 'label' his feelings, i.e. when he's cross, say 'I can see that you're cross', etc, etc. Trusting that the 'lebelling' of these feelings are correct, the assumption is that he'll hopefully identify the feeling and recollect the 'label' that's been applied to it and in future hopefully be able to recognise and identify how he's feeling himself. I can see the thinking behind this, but I'm not always felt comfortable telling him how he feels, yet I can see if he can't do this for himself, he needs to be taught. I guess it's the same principle with the social stories. Caroline.

We keep hearing about 'Inclusion', that is integrating children with additional needs into mainstream schools to be educated. Kids on the spectrum should be taught essential social skills. Also, I guess the hope is that to a degree they will pickup social skills from their peers, however, some of these things don't come naturally. So, in order to meet their needs, clearly this is a gap (not just academic needs). It's an LEA's duty to meet a child's needa, especially given that in some cases, parents, despite fighting tooth and nail' cannot get specialist placements. I hadn't anticipated my parenting style being scrutinised by being asked what I'm doing to develop my son's social skills outwith school, but since you've asked: - enrolled kiddo into various extra-curricular activities whereby kiddo can interact with both with NT and AS peers - social stories - specific books i.e. blue bottle mystery, etc - discussion - play therapy - invite kids round to the house and be ready for mediate situations as and when they arise (they inevitably do!) - generally handling daily meltdowns Caroline.

Absolutely! Caroline.

Sorry, I'm not 'getting' your response/post. Whilst a 'specific event' occurred, in my view it raised an interesting topic for discussion/debate generally. The 'better approach' was raised with the school as soon as I found out. I didn't feel I needed to define academic achievements or social skills, I perhaps wrongly assumed most would understand/accept those general terms. As I've already explain my view is that whilst I want my son to achieve the best that he can in school, I'm far more concerned that he learns how to interact appropriately with others, moderate his behaviour, etc, etc. In other words, essential skills which we all use on a daily basis, be it to make a phonecall, answer the door, go into a shop, etc etc. In society, people are expected to conform and fit in. If they don't quite fit the 'norm', then some individuals can be very unforgiving. So, it was a very general debate, initiated as a result of an experience. NB: Perhaps what I should have done in the poll was to include an option for 'Equally as important'.

Hi. The social skills group is a class run by the school's special needs teacher aimed at getting the kids to work together, interact appropriately, deal with anger issues appropriately, etc etc. It's been a long time coming, in fact, 4 years. It's not a club - had that been the case, I would have taken a different view. Indeed, I have expressed that I expect R to be encouraged positively to knuckle down and work to the best of his ability (although I could see what the teacher was trying to achieve, I didn't agree with her methods), however, given he has AS and possibly ADD/ADHD, his progress cannot be measured with his NT peers (he's in a mainstream school) as a child cannot be forced to concentrate - clear guidelines and frequent short breaks, etc have to be introduced (errands, assisting with collecting register, etc). AS, ADD/ADHD doesn't excuse poor concentration bad behaviour, etc, but it complicates things and sometimes a different approach, concenssions, or different expectations have to be made. I think the problem in this case is that the teacher's expectations of R are the same as his NT peers.

Hi An update... Got a very understanding email from Headteacher this morning saying: I am writing to apologise for the extremely unfortunate decision made on Monday. I agree with you entirely about the need for R to attend the social skills group and with the fact it is not under any circumstances to be used as a reward or as a sanction. I became aware during Monday afternoon that it had been withdrawn and raised my very serious concerns about this action with Mrs XXXX at the time. It was late on in the afternoon by this time and I took the only action I thought might go a little way to resolve the situation. R had a shorter session, about 15mins ,with XXXX and Mrs XXXX. No-one was more frustrated about the situation than me, and those concerned knew that. I can only apologise for what happened . The decision had been made without consultation and it was without question the wrong decision. I cannot defend it. Sorry, XXXX I'm pleased to have received such an understanding email. C.

Trick? No. Sorry, I don't see it as a trick. There's no right or wrong answers. Even though I have my own strong views on this, I'm genuinely interested to gauge other peoples' views too.

The fact that 3 psychologists have each raised ADD/ADHD again and again as a possibility, and are actually reassessing, is irrelevant to the school (again, I'd be careful to point out that disorders are not an excuse, but a reason for difficulties). His teacher decided to remove a valuable social skills group as a punishment for not completing work. I feel they should have positively encouraged him to stay on task, rather than negatively withdrawing the social skills group. It shouldn't be seen as a reward, but rather than an essential part of the curriculum, which I guess is my point. Caroline.

Hi My son is being assessed again for ADD/ADHD - initiated by CAMHS. Clearly, R does have problems concentrating. Today his home/school diary states that he missed the first social skills class as he did not complete his classwork as he couldn't stay on task. My own personal view, which I've made clearly to education professionals, is that whilst academic achievements are important, I feel social skills are more important and should be top priority. I'm actually quite annoyed that this should happen. Grrrrrrrrrrrrr!!! Everyone has to interact with others on a daily basis - be it to pop to shop for a loaf of break, go to the post office, or to get fuel. I'm not for a second knocking anyone with formal qualifications (I've got qualifications), however, interacting appropriately with others, is in my view far more important than qualifications (as is common sense). Caroline.

Hi JeanneA If I were in your shoes, I try to do as much homework as I could and try and work out what the potential benefits would/could be as well as what the negatives could be. I know you've already agonised over this and done as much homework as you can and tried to look at other options. I think you've done the right thing asking to avoid the Christmas break, which would be a break in continuity. I'd be inclined to give it a go. There have been times when I thought, R won't manage that - not trying to be negative, but basing that upon past experience, and have been surprised. Glen may flourish. No one couldn't say you haven't tried you're very best. Best wishes. Caroline.

Hi Granted it can be hard knowing when the loosen the apron strings, but at the end of the day you know your son better than anyone. Social workers see only a snippet and can be very good at making the wrong assumptions and are not specifically ASD trained, equally sometimes outsiders can be good as seeing a slightly different perspective. A bit of self-assessment/reflection can be good at times, but don't be too hard on yourself. Caroline.

Hi My son is on melatonin and it has helped a great deal. He's nearly 8 and has been on it for 3 years. I've always seen medication or any description as a last resort, but we'd worked through various long-term strategies/programmes which didn't help (ie Solihull approach, etc). When you're exhausted it's difficult to try some of these things, but it's worth sticking with it to see if there are any improvements before trying medication. For example, a set bedtime routine at a reasonable hour: after dinner, wind things down - avoid exercise ie trampolining, football, etc, electronic games, etc (basically anything which will stimulate the brain) avoid sweets, fizzy drinks, etc - ie anything with sugar or caffeine bath time - start of set routine whereby kiddo can wash and still have a bit of playtime too supper - ie toast and milk (or similar) bed - story (read) or audio story try introducing incentives It could be you've tried these things, but whilst they might not work miracles, they can definitely help. If you do pursue melatonin with your GP, s/he may initially be very reluctant since it is unlicensed in the UK (my son's consultant had to write to our GP before he'd issue prescriptions). It's a natural hormone that kicks in quite quickly that is available in tablet or capsule format. I know it can be difficult to get a child to take medication, but it's worth trying to get them to knowingly take it - my son used to refuse, but then he got to the stage where he realised when he did take it that he slept well and felt the benefits. He now asks for it, if I forget! One thing to note is that melatonin will not keep a child asleep - it simply helps get them off to sleep and so it may be that kiddo will awaken after a few hours. Caroline.

Hi Peaches I can completely understand why you're considering medication. My son R's behaviour is generally very up and down. His consultant has actually said she feels he may have a mood disorder. However, statistically and by her admission, a mood disorder (ie bipolar) would not be diagnosed in a child (average age is now something like 19), although tell-tale signs can be present. After trying lots of differents things ie NAS help! programme and a 3 month stint at a special unit whereby my son and I had to attend 2 days per week - we were both observed and suggesting, etc were given. There were lots of other things too, but I felt we'd reached crisis point last year. R trialled Risperidone, but we couldn't continue him being on it as he wouldn't allow baseline test results to be taken ie blood pressure, blood test, weight, height, etc (had 4 separate attempts!). So I've been there! I know some people feel quite strongly about medication, and I was one of them. When you're faced with an aggressive kid day-in day-out and it affects the whole household, it can offer results. However, I recall watching louis Theroux, Americas medicated kids documentary. I don't feel Britain has the same mentality, but certainly my impression, based on the kids/families in the documentary, that there was a culture of going straight for medication rather than trying to tackle the root of the problem (ie parenting skills, child being disciplined appropriately, etc). One of the American clinicians said as much. He did however raise a controversial question – 'Is it so wrong to do that when the child benefits because they're calmer, and in turn the whole family benefits? Yes, it's the easy option, but everyone gains.' Valid point maybe, but one that has implications – ie culture of parents that can't parent/discipline kids properly, badly behaved kids that aren't disciplined, health implications of kids being on medication long-term., etc, etc. Personally, I've always seen medication as a last resort, and still feel that way. There's no getting away from the fact that some kids behave badly because of poor parenting, but that's not always the case. I also believe that any kid can behave badly, but that as a result of anxiety, misreading a situation, etc that kids on the spectrum can sometimes have some pretty horrendous meltdowns (so, it's not an excuse for bad behaviour, but it's a reason). Kids on the spectrum, like my son R, can have co-morid disorders which can make them unpredictable, which greatly complicates things, ie conventional discipline methods don't work. Don't know what to suggest Peaches. I know what it's like to be at the end of your tether, so you're not alone. I'll be watching this thread with interest. Caroline.

Hi Don't give up. If your heart and your head tell you your child has AS, persevere in seeking answers. I recollect being not allowed to attend a meeting and I allowed it to go ahead. You are within your rights to request the minutes of the meeting, or even ask for a representative (is there a local advocacy type organisation that you could get in touch with?) to attend. Also, it would be worth your compiling your own views providing reasons why you think your son has AS - family history (genetic link), traits/characteristics/behaviours/difficulties, etc. You know kiddo better than anyone else and so a short bullet-pointed report sent to each individual in advance of the meeting would be worthwhile. I recall the whole process being very draining, frustrating (to say the least!), etc - I recall crying out of sheer frustration because I felt no one was willing to taking responsibility and say what was wrong with my son. I understood that the diagnostic process involves a number of specialists, but I felt we were being passed from pillar to post. On the occasions these people did see my son, it was a real 'hit and miss' - sometimes he'd be positively angelic, other times he'd present how he normally presents. Main frustration was that they'd only see him for a short time ie 20-30 mins. This meeting could actually be very positive. Because the quest to seeking/gaining a diagnosis can be all-consuming waiting and waiting and then meeting after meeting became more and more frustrating. However, no one wants to get the diagnosis wrong. It could be that they're actually close to making it. So, whilst I'm saying don't give up, submit a representative report to the meeting attendees, there will also be an element of sitting back. Hang in there. I'm a big believer in saying that 'time will tell' because it will! The older kiddo becomes, the more obvious some things become (whilst it's true that kids can learn to manage/deal with things, there's inevitably new things they can't cope with and so it becomes obvious). Caroline.