cmuir

Hi I used to visit this forum a good few years ago now. Things seemed to be going okay until the past year or so. Feel like I'm at absolute breaking point. Here's an outline... I've got a 14 year old son with Aspergers. He's been trapped (I say that because placing requests have been turned down repeatedly) in a mainstream environment. R desperately wants to be like his NT peers, but because of high anxiety levels, his challenging behaviour means that he sticks out like a sore thumb! He's had several exclusions where 7 members of staff have reported to feeling threatened and intimidated by him. One has reported sexual harassment. I've been pinned against the wall by the throat and my husband (R's dad) was knocked out a few weeks ago. I've had to call the Police several times now – when they hear out address, they send 4. Social Work have been involved for years, as have CAMHS. Social Work say that there's nothing they can do as R refuses to engage with them. Nonetheless, as I've pointed out, that doesn't help me. He can't be put in care, because they say that there are no suitable placements, and asked me outright what it would take to keep him at home. I made a placing request for an independent specialist residential school, which was recently turned down the the EA. The EA are now fighting this and I'm having to go to a Tribunal. We have a Barnardo's support worker who really gets Autism. However, he sees a very different side to R. He takes R out to McDonalds and KFC, and basically does everything that R wants to do. As I've pointed out, the problems we have at home are when anything is asked of R – even the simplest of tasks e.g. taking his cup through to the kitchen, getting showered and dressed, etc etc. R's Headteacher has emailed the EA and said that he'd require a huge amount of specialist support in school for his staff to support him, but he feels strongly that R's needs are not being met. Furthermore, he's outlined how challenging R can be. Still, the EA keep trying to slap him down and continue to say that he can be supported in mainstream (I should add that they did admit that they don't have any specialist schools that were willing to take him, or able to support him). I'm really struggling. This morning things came to a head and I lost it (balled at him and told him to get out of the house). Support Worker arrived not long afterwards to calm things down. Feel like I'm at the end of my tether – and such a failure. I'm not even sure what I'm fighting the EA for anymore – I fear that R will be so difficult (he says he'll do that) at the independent school, that it wouldn't work.

By the sounds of it, the Police only became involved because the school notified them of an assault on staff. The reality is that whilst the Police might have some awareness of ASDs and may see your son's ASD as a reason for the assault, nevertheless, they will be acting upon a report by the school for a 'crime'. When children are taken into custody (or otherwise) by the Police a responsible adult must be with them – in this case, it's likely they will have deemed the member of staff to be the responsible adult. I think the school should have had a duty of care to call you in the first instance. A school can effectively act if a child is deemed to pose a health and safey risk to him/herself or others, which is fair enough. Clearly, kiddo lashed out as a result of not coping/his needs not being met. If this was a one off, then I think, on the surface, their actions were OTT. However, it could be that they're playing a strategic game and acting in his best interests. If they're struggling to meet his needs and not coping, then by reporting assaults, etc, then this should in theory make professionals, education authority, etc, sit up and take notice and force them to look at a more suitable placement. I'd arrange a meeting with the Headteacher and find out what the rationale was behind this. It could be that they're building a case to have him supported in a more suitable school. Of course, their interests will also lie with protecting their staff and other kids. Very difficult situation. I'd find out why they acted the way they did.

Hi there Had lots of problems a year or so ago with my son. On one occasion, he came home from school and told me that his teacher had pushed him. He'd apparently walked out of class and was about to head out of the doors to exit the building. His teacher had instructed him to go back into the building whereby R bumped into the doors, which in turn threw them open knocking him over. R was very clear that his teacher had pushed him. Thankfully, I called the HT and was careful to state that I was aware something had happened, but unsure what, and told her what R had said. It became clear that R's perception of the situation was that his teacher had pushed him. He deemed her responsible for him being pushed because she insisted he go back into the building – she hadn't literally pushed him but her instructions had led to him being pushed by the door,and so he deemed his teacher to have been responsible. We've been in other situations when R was upset with us and told us we'd regret upsetting him. He duly went into school and told his LA that we'd been hitting him. Needless to say, a social worker was called. R panicked and eventually told social worker that he was angry with us. So, that one was a bit of a whopper! There were lots of other examples of situations like the two outlined. Some school staff felt R was telling blatant lies, but when one actually breaks things down, in the first example, he wasn't lying. He was stating his perception of situations. I'm not saying that ASD kids don't tell lies (mine certainly has!), but I think it's important to consider that there may be issues relating to how a child perceives things. It was tackled by providing a social story on fact and fiction with the focus being on actual sequence of events. Caroline.

Hi Early on I knew something wasn't quite right with my son. I'm not saying parents are experts, but maybe mother's instinct/intuition and all that counts for something. My son had terrible tantrums that I could never quite work out what the cause was, required little sleep, was ritualistic but not obsessively so, etc. He was ddiagnosed with Aspergers at 4.5. It's a personal thing, but for me a label was very important. I didn't want my son labelled with something he didn't have, but felt strongly that he was more likely to get recognition and support with a label for something he does have. The diagnostic process was a long and emotional rollercoaster. My son's school years have been very difficult. He's high functioning and so appears sociable, and 'normal' in many way, but there have been noticeable differences. On the whole, I've found that my son's school treated him as if he were badly behaved – they've consistently attempted to treat the symptoms, but not the cause, if that makes sense. They've also failed to pick up on lots of things e.g. signs of stress, dysgraphia, dyspraxia, etc and make adjustments, etc. I'm sure some schools are very good, but please don't allow whatever school say to wholly dictate whether you pursue investigation or not. Be very aware that ASD children can present very differently at home than in school. They can try very hard to fit in, but more often than not, it's at a cost – they 'vent' once home, etc. I can't say one way or another whether your child has an ASD, but go with your gut feeling. Record anything that strikes you as odd and be clear about reasons for suspecting ASD with your GP. The diagnostic process can be long as it often involves professionals with different areas of expertise e.g. SALT, OT, etc. Best wishes. Caroline.

Hi I don't know all the ins and outs of things, but I'm sure you did what you thought was right at the time in order to get by. C.

Hi I sympathise. The diagnostic process can be such a long one mainly because, if it's done properly (no one wants to label a child with a condition unless they have it, and even then ...), involves a number of professionals e.g. SALT, OT, Psychologist, etc. In my son's case, we were passed from pillar to post – after 19 reports and being no further forward, I ended up snapping and insisting on answers and demanded a referral with proper assessments. School should be assistant as well as the Ed Psych by providing reports on presentation in a number of areas (they aren't qualified to diagnose, and nor should they, but they should know what's within the 'normal' range academically and socially). My son had an ADOS. It was filmed and a specialist paed (a Professor whose specialism is neurodisability/autism) and a SALT carried out a number of tests. It's designed to look at eye contact, reciprocal language skills, understanding, behaviours, etc. No diagnosis should be based upon one visit, but rather, if appropriate, a child should be seen in a number of settings (not just at home or in school). In my experience, post diagnosis, my son was referred to CAMHS, we were through a few – some didn't have a clue what they were doing and frankly we went round in circles. Because I kept a diary (perfectly sensible I thought) detailing my sons' behaviours, I was told this was a very negative thing to do – needless to say I was livid. Told that person that one doesn't go to their GP to tell them how great they feel, but rather report all issues with a view to a diagnosis. Recording things in a diary was the only way I could accurately keep track of things. We moved onto someone else! Sometimes, it takes time to find the right people. Some are insistent that a child has to tick every box, but my son isn't classic - it took a few years before we saw a professional that 'got him'. Be strong, be persistent, ask for an ADOS (via GP and carried out by Paediatrician/local hospital's communication clinic), keep a record, and keep your chin up!

Hi My 11 year old son was prescribed Sertraline. He started off on something like 50mg working gradually up. When he got to 150mg, hubby and I noticed kiddo's behaviour took a worrying turn. Don't think it's helpful to go into detail, because everyone's different, but it appeared to be too much of a coincidence. His psychiatriast was very concerned and we reduced it to 100mg before he came off it completely. He's now on Risperidone (at one point, he was taking Risperidone alongside Sertraline, but that was after the worrying behaviour. In answer to your question, my son's Psychiatrist advised that most people get along fine on Sertraline, but in a few cases, it can actually make symptoms worse. Definitely seek medical advise if you're concerned or have any questions.

Hi Many thanks for all your comments. My biggest fear is that we could force R to go to the special school and it won't work. I've been told that it would then be very difficult for him to go to the mainstream high school, whereas, if he's goes there in the first place, there are options if it doesn't work. The biggest issue is the identity crisis that he has - he's been in mainstream and to suddenly put him into a special school where he doesn't want to go could big problem because he won't fit in. One point is spot on in terms of what my thoughts are... Years ago, kiddo used to refuse to get his hair cut. I remember cutting his hair whilst he was sleeping before deciding to let his hair grow long enough for him to see what a pain it was so long. It worked! In a crazy kind of way, I'm thinking that time will tell. I think R will struggle in mainstream high school, but that's very much dependent upon the support that he'd received. At least R would work out for himself whether he can cope with it. Thanks.

Hi Sally Thanks for your response. All the points you've raised (split placement, support, peer groups, therapy, etc) have been raised by me and I won't get answers on some of the things until the end of April. R has visited the special school twice and taken part in activities. He understands that it's not a bad place, but just doesn't want to be there. The special school isn't helping by repeatedly fobbing me off when I ask about peer groups - I keep asking if they've met the peer group, what they're like, etc etc and still not getting anywhere. Legally, they don't have to tell me. I've stressed the importance of peer group and pointed out that the GIRFEC model covers social stuff including peer group. Because R has been kept in a mainstream school for 7 years (despite my attempts to move him), he has an identity crisis - he's sees himself as more neurotypical than autistic (but admits he has issues) and desperately wants to be like his neurotypical peers. That's the fundamental problem. ASD kids can be very single-minded and because of his existing mental health issues, staff are all using that against us in this instance i.e. pointing out that sending him to a school where he doesn't want to be could cause more issues. I've argued otherwise, but it's clear what's going on. In the meantime, I'm unable to make an informed decision about the mainstream school because I won't get any answers until the meeting has taken place at the end of April. Meanwhilse kiddo is miserable, threatening to self harm, etc etc.

Hi Could he be struggling because he has Dysgraphia. My son has Dysgraphia. Sadly, school staff weren't just dismissive, they were obstructive, when I raised it with them. School kept saying that my son couldn't be bothered to write, motivation was an issue, etc etc. Truth was, there was a reason why he didn't want to write. Dysgraphia can be quite distinctive. R's writing tends to slope off (less obvious on lined paper), with poor spacing between words, and contained a mixture of normal case letters with capital letters, as well as characters and numbered which were back to front. Sometimes kids are mis-diagnosed with Dyslexia. In my son's case, because his Educational Psychologist and Support for Learning Teacher were so dismissive and obstructive, I eventually went to my son's consultant. She went into school and diagnosed Dysgraphia, but also Dyspraxia. At that meetng, school staff were keen for R not to be labelled and were still insistent that motivation was the issue. I therefore went in armed with drawings that he did of his own accord at home (because it matched work in school and showed motivation wasn't the issue). Definitely worth looking into!

My son has been schooled in a mainstream Primary School with a high level of support. His primary years have been plagued with issues, but no one (other than CAMHS) supported placing requests). No that kiddo is about to start high school, the education authority have decided to place him in a special school for kids with Aspergers and Autism. Kiddo has mounted a 'campaign of protest' and is adamant he's not going there - purely because he doesn't see himself as like them because he's been mainstream and desperately wants to stay with hi so-called friends (in real terms, they're classmates). We've had several visits to special school, but I feel very let down that no one there has given me any confidence that the placement might work. Rather, on each visit, they keep saying that because of kiddo's strength of feeling, it's unlikely to work. Also, there should be a clear transition plan, and with 12 weeks until the end of summer, there isn't one! I've pointed this out to them and have repeatedly had to push for visits, etc. It appears to me that they don't agree with PAGs decision. I'm also aware that staff at his current primary school, have made phonecalls, etc to head at special school (without my knowledge) and when asked why, will only say that they're all very concerned about kiddo's mental health if he's forced to go to the special school. Meanwhile, I've asked Ed Psych to establish what enhanced support package kiddo would receive if he goes to mainstream High School with his peers. Won't know anything until at least 24 April. On one hand I know that kiddo desperately wants to go mainstream, but I'm struggling to see how it can work when he's struggled in a school of 300 (high school has 1500 pupils). His peers are accepting of him generally, but new peers won't be so accepting of him, he'll be vulnerable, easily led, is very hot tempered, etc. I desperately wish he'd go to the special school, but i can see that there are pitfalls there too - I keep asking about peer group and have been given evasive answers. Part of me thinks why let a kid dictate where he goes, but then, he's been miserable for months (and so have I) since hearing about this, special school don't seem to want him, etc. Feeling very confused and hoped that since 21 January when I got the news, things would become clearer, but the clarity and gut feeling just isn't there. Rock and a hard place are the words that spring to mind. Just feel so angry that if he'd been moved to special school 4 years ago (at a time when his social awareness wasn't great), we wouldn't be in this turmoil. Hate this.

Hi Sally Thanks. We have had a formal offer of a specialist placement in writing. My husband and I have visited and were very impressed. I asked what they knew about R and was surprised by how much they actually did know. We also spoke about his interests, etc. He knows a couple of older boys (who''ll be leaving soon unfortunately) and his love of football (as well as issues relating to games, etc). They're arranging for the older boys to show him around and the ex-footballer learning assistant to work with R. I was very impressed with the things that they're putting in place. I have a meeting on Monday and am looking forward to hearing more about their transition plan. All of what you're saying about your own son is very true of mine. It's a very long and slow road isn't it? There's no easy solution. I'll certainly ask CAMHS at CP input even if it's only to advise me on strategies, etc. Thanks again. Caroline.

Hi both Many thanks for your replies. Difficult situation. All kiddo can talk about is school, school, school. I've been drip-feeding him information about the specialist placement school. It had been thought initially that R would go into an Inclusion Unit, but his behaviour, etc. dictated that his needs couldn't be met and so the specialist placement was offered. It's Edinburgh's only school for autistic children, and I was very impressed when I visited. Their main focus is on social skills first and foremost, but the school showed a real awareness of R's sensory issues (which no one else has!). To a point they follow the Scottish curriculum where possible. I'm happy that the school can meet his needs. The big unknown is whether R will go and engage with staff and want to try and make it work. At the moment, he's very low and wants to stay with his 'friends'. I'm certain that his anxiety and depression is attributable to an ablity to cope even in a very small mainstream school (for lots of reasons). We're working with a Psychologist at CAMHS who is very good. She felt going down the CP route was a non-start due to how kiddo was presenting, but hopes that on the meds things might change for CAMHS to tailor the way they work with him. I think we're in for a difficult few months, but there's a saying that things have to get worse before they get better.

Anyone?

I've been a bit of a stranger over the past couple of years, but things have changed a lot in terms of how my son presents. He's in his last primary year in school and has been self harming, had 3 exclusions, assaulted a Challenging Behaviour Teacher, etc. etc. I'm not excusing any of his behaviour, but I've also battled to get across to Education 'Professionals' that he is misunderstood, staff don't understand/acknowledge/deal with his behaviour appropriately (he's been in mainstream since starting school). Four years ago I have a specialist placing request turned down for a school that's teaches Autistic children. He wasn't deemed to be disabled enough. Since then, I'd always communicated that I felt this was wrong and his mainstream placement coupled with level of support wasn't enough. His behaviour was always much worse at home, but last year after a change of HT, his behaviour became extremely challenging in school. Still, staff were talking about a placement to a High School with an Inclusion Unit. Suddenly, out of the blue, the Education Authority had turned down the 'compromise' of the Inclusion Unit, but offered a place at the specialist school he was turned down four years ago. I'm really cross that things have had to reach crisis point before anything was done (kiddo tried to strangle himself with a belt twice, and there have been lots of other incidents). I'm also really upset that he was denied the specialist early intervention 4 years ago, which had he been moved at the time, would have been much easier on him. Big issue now is that although I think I'm happy about the placement, I'm really upset for kiddo that I know it's not what he wants. He believes that he has friends (none of them are what you'd call real friends really - he doesn't get invited for play-dates, etc), but he said that he feels that we all want to take him away from the very people that keep him going. R is in complete denial, he's been diagnosed with depression and anxiety, is refusing to take his medication, is very challenging physically and emotionally, etc. etc. Special school has lots of good ideas about transition, but I feel this is all like pulling a plaster - the longer is takes, the more painful it becomes (there is no chance of an early start). Special school told me that there is a child who came from mainstream, hasn't engaged with the school at all, and 8 months later papers are being drawn up to move him into an Inclusion Unit. I'm worried this could happen - I think the school could be great for him, but really concerned he'll make his mind up not to make it work. We've talked about trying to stay in touch with peers, etc, but he's just not interested. To top it all, school have been taking him on class visits to the Inclusion Unit High School (where he wants to go) for school projects (they don't share my view that it's rubbing salt in the wound and contributing to him being in denial!). Kiddo is refusing to visit special school, etc. Got a meeting next week, but feel at rock bottom - this could go on for months and months. Anyone have any ideas? Would be much appreciated.