cmuir

Hi Our Education Authority (Edinburgh & Lothians) guidelines advise that staff should not pursue a child for health and safety reasons. The thinking behind this is that if a child is being pursued (walking or running) then the likelihood is that this may cause further distress to the child and cause them to run (potentially into danger e.g. crossing roads/vehicles, etc). In honesty, I can see the logic in that, though that then leaves it up to the police to find the child. In my son's case, he was out of school for around 25/30 minutes, which is a long time for him to get lost or be in danger when in a highly distressed state. Difficult one. I was thinking of providing the school and the local police with a sheet of paper providing details on kiddo's disability, interests/hobbies (which would help someone engage him in conversation), possible route from school to home (1.5 miles), photo, etc.

Hi Yesterday was one of the very few rare occasions when I went out for a bar lunch with a couple of colleagues, then my phone rings with the school's number showing up. Kiddo has finally done it – he walked out of school and left the premises. His LA had apparently walked after him and tried to persuade him to come back, but kiddo kept walking and she realised this time he meant business (R has been making noises about running away both at home and in school). Seems that he'd had a difficult couple of days misreading situations and unfortunately the red mist had descended and he refused to listen to reasoning. Very bitter sweet... On one hand I was worried sick as he's not streetwise, and would likely not be thinking straight, etc and I was concerned this could affect his ability to stay safe i.e. crossing roads, etc. On the other hand, I think this is another wake up call for the school, education authority and social work (last week he told his LA that his dad hits him which wasn't true (I was there!) and resulted in a Social Worker being called etc etc). Anyhow, thankfully he was found safe and well, but rather tearful. Police were very nice (perhaps a bit too nice!) and I cannot fault the way that school staff handled things and kept me posted during my 25 minute journey to the school. Would love to say he's learnt his lesson, but you know what, I don't think so. I think that once he becomes upset/cross, he gets to a point where he's unable to control his emotions which is when things escalate. Saw Special Needs teacher whose advised this will be added into his IEP (running away). In a strange way, his behaviour actually gives me amunition to help secure support for his future, however, I could soooooooo live without the drama! (was diagnosed with a degenerative eye disease and have so far underwent 3 operations, have high blood pressure, heart problems, etc etc). Caroline.

Hi I too wasn't enamoured with the title, since none of us are perfect. I was really interested in following the two boys, since my son has Aspergers and my uncle has Tourettes. If I'm honest I really didn't know what to think about the little girl. Could be because I don't know anything about selective mutism (am ignorant/don't understand it), but actually felt that the little girl was given a great deal of adult attention all round from parents, teacher, learning assistant and SALT and wondered whether this contributed to her not talking, for example, I was surprised that she was being visited 3 times per week by a SALT, she actually looked like she was quite happy playing with games/toys, etc and chose to speak on a 1-2-1 basis and then later on a 2-1 basis. Guess overall I had really difficulty with the fact that she chose to speak outwith school and appeared to chose not speak in school, though it was narrated that she couldn't speak. In contrast, could be because I have a much better understanding of Tourettes and AS, that I felt that there was a lot less support, for example, mum of boy who was eventually diagnosed with ASD, felt that no one listened to her and that it was a lengthy road to get any answers (sound familiar?!). My first impression was that the boys didn't choose to have Tourettes and an ASD, whereas the girl chose not to talk. Highlighted the fact that there's a discrepancy in support, etc. C.

Hi I'm NT and so don't know what it's like to have/live with AS (though I'm mum to a 10 year old). I think a valid point is that we all feel insecure at times and I also think it's true to say that we can all go through spells where we feel quite down or depressed even. That can result in feeling utterly disillusioned with everything/life. I've found that sometimes it's best not to over-analyse something, e.g. I always wanted to understand my son's behaviour and tried very hard to do so. However, I reached the realisation that there are some things that one cannot apply logic to because everyone is different. Caroline.

Hi Usually when a child is being assessed for an ASD, a number of professionals are involved (though I know this isn't always the case), for example, SALT, OT, Paed, etc. In addition, it may be that they'd like reports from nursery/school, etc. They may well even carry out an ADOS which is aimed at looking at reciprocal language, eye contact, understanding of language (i.e. if they understand what's being asked of them), how they interact with other people, etc etc. I recall being becoming increasingly frustrated with the whole process when my son was being assessed. After 19 reports, it felt very much like we were being passed from pillar to post and that no one was keen at all to definitively say 'you has has Aspergers'. In hindsight, I can understand why it can take a long time, but equally be aware that you need to be sure that your child is being seen by specialists who will take the time and trouble to thoroughly assess your child (sadly, some can be very dismissive without knowing/seeing how your child presents on more than one occasiona and in a variety of settings outwith the clinic/hospital). It does sound very positive in that you've been told that further investigation is going to be done.

Hi My son is nearly 10 and pretty much since he was small he can be extremely challenging. Any professional that's spend time with him over the years has reported him to be unpredictable, an enigma, etc etc. Anyhow for as long as I can remember hubby and I have asked for support from various sources and received none/very little, for example R attended a social work respite club where everything was fine for a few months and then staff decided to pull the plug on it because kiddo was extremely challenging and deemed a health and safety risk to himself and others. Cut a long story short, kiddo was mad at hubby for asking him to tidy his room, and out of anger R wrecked his lego models. Next morning kiddo told school staff that hubby hits him (which he didn't – I was there!) and school call in Social Services. Suddenly they all want to arrange a meeting and provide support. Very bitter sweet. I'm hacked off that only reason everyone is professing to offer support is to cover their own backsides, and I dare say, there's an element of genuine concern for kiddo. At the time a social worker was called to the school and attempted to speak to R, but R refused to engage her in conversation, but did admit that his dad didn't hit him. In addition everyone seems satisfied that kiddo isn't being hit/abused. Unfortunately CAMHS won't be attending because they were only given one week's notice. Likeliehood is that they'd offer a repeat opportunity to attend the incredible years programme. This is something designed for younger children, hasn't been specifically designed for ASD kids, and something that I've already invested 3 months doing. Great! Kind of wondering what the point of the meeting is. It's today at 1.30pm. Really not looking forward to it and I should be very positive about it, but I'm actually feeling quite browned off by it. Caroline.

Hi Out of interest, if the Uni were made aware that you're son was becoming so stressed, was any support sought and then offered? Starting Uni can be a huge change as can undertaking anything new, and so perhaps with a bit of support he could have given it a go for e.g. a term before reviewing things. With regards to the fees, it might be worth contacting the Uni's student support service or equivalent and see if they can offer any advice on this. Best wishes. Caroline.

Hi I'd write on the envelope "Moved away - return to sender" and pop it in the post box. Caroline.

Hi I agree with Sally that waiting until he's 9 is far from ideal. We hear lots and lots about early intervention, and I can appreciate that the diagnostic process can be a lengthy one (given it usually involves a number of professionals e.g. OT, SALT, etc), however asking you to wait 4 years is excessive and unacceptable in my book. Kiddo could potentially lose out on support. Could be that this person would like to see how kiddo gets on at school, however, again, I still think 4 years is ridiculous. In my experience pester power can help – when my son was referred to the Communication Clinic, we were passed from pillar to post and no one seemed prepared to want to make any decisions. After some 19 reports, I'd had enough and heard about a fantastic consultant whose specialism was ASDs. I remember bypassing everyone and phoning her secretary, explaining the situation, and asking for a cancellation. Got there in the end! Can you bypass this individual and seek a referral from anyone else to the consultant? Best wishes. Caroline.

Hi Could this be a matter for social work? I believe in Scotland they can award family funds or grants, for example, I've heard of a family getting money to buy a trampoline for a child with ADD or a mother being able to spend money on putting herself through her driving test because it would ultimately benefit her disabled child. I could be wrong, but think this could be looked after during the course of a section 23 social work assessment. Best wishes. Caroline.

Hi Difficult one as it's difficult to know all the facts for sure unless e.g. one was able to see his bank book/account details. If this young lad is able to work in a charity shop, etc, then I think it's safe to assume that he could be taught about monetary value, etc. Whilst I think one needs to be very, very careful about making accusations, your hunch may well be right. Sadly in some instances, people with additional needs can become victims of this type of fraud. If you genuinely feel that the mother is spending this man's DLA on herself i.e. not on care for her son, then it needs to be investigated. In some ways it's kind of the same scenario as suspecting someone of child cruelty – do you do nothing and hope that you're mistaken, or do you get someone to investigate and hope that's you're wrong and/or possibly prevent something happening. That's perhaps a bit dramatic, but all the same this young person's financial future could be in jeopardy. I don't know who would be the best to look into this, but would guess DWP or Social Work, or maybe NAS or CAB could offer advice in the first instance (given that there's a real danger that this money could be suspended/stopped). C.

Hi My son went through quite a lengthy spell of exhibiting quite extreme behaviour and telling us that he was told to do X, Y and Z by voices in his head. At the time I felt quite alarmed by this, but was very careful not to show that I was to my son. I also sought advice from CAMHS and they agreed with me that it was likely that he wasn't able to articulate how he was feeling. For instance, I know when I'm at boiling point, I tend to want to react in some way depending on the situation/circumstances, almost as if an automatic type of response i.e. consciousness. I'm probably not explaining that very well, but with my son CAMHS and myself felt that that was what was going on with my son – he wasn't actually hearing a voice, but rather battling with his conscience/sense of right and wrong, and not actually able to put that feeling into words (interpreting that as a voice telling him to do things). Does that make sense? Some individuals with an ASD may well end up with a diagnosis of some kind of mood disorder (average age of diagnosis is 19 and usually becomes more and more obvious in their teens), and so it is possible that kiddo might be hearing voices – I don't want to be dismissive, but am purely guessing that the above is perhaps a more likely explanation. YoungMinds has a good website and in the past I've had cause to make contact with them: http://www.youngminds.org.uk/ Best wishes. Caroline.

Hi I'm NT but has a son with a formal diagnosis of Aspergers and a husband suspected (by same professionals that diagnosed my son) as having the same. I couldn't possibly say one way or another whether I think you have Aspergers, but you describe traits that I can relate to and some traits which are could perhaps point to Aspergers. I think with the adults seeking a diagnosis is more difficult than seeking a diagnosis for a child. Nowadays, professionals know much more about ASDs compared with 10/20/30+ years ago (I have a 44 year old uncle who was diagnosed at 19 with Tourettes – he almost has celebrity status where he lives because no one seems to know anything about Tourettes and he hasn't had any support, etc). I also think that generally we live in a more accepting society (compared with days gone by), whereas perhaps years ago parents wouldn't entertain the notion that something may be wrong with their child (ignorance/lack of knowledge/socially acceptance/etc all come into the equation). Therefore, I'd normally say 'ask your relatives/friends what you were like as a child, etc', but for the aforementioned reasons, it may be difficult to get an accurate account. In addition, one becomes very accepting of others idiosyncrasies, etc which also make it difficult to distiguish between those and AS traits. It's worth considering lots of other things e.g. how you coped at social gatherings, at school, etc etc. Ultimately, I guess the first step is to see your GP to ask for a referral. Could you ask a friend/relative to attend the appointment with you? Also, might be worth giving NAS a call or looking at their website – there are some useful contact details. Best wishes. Caroline.

Hi I think most of us are only too well aware of how issues at school can affects our kids behaviour at home. Seemingly trivial things can result in explosive meltdowns, volatile/emotional behaviour, etc. Last week my son told his LA that his dad hits him because he was cross with him for asking him to tidy his room. There's been lots of issues at school mostly fairly trivial, but not to him! He frequently threatens to run away (both from school and at home), and packed his suitcase/sleeping bag/tent on Saturday night. Although I wanted to say 'don't go', I knew that would add fuel to the fire and kiddo would be looking for me to react. I didn't and sat down to watch the X-Factor after telling kiddo that I'd leave the door unlocked should he change his mind and come back. He got as far as the hedge, and was extremely tearful when he came back in the front door! The key really is to find out the facts. I'd make an appointment to speak with the teacher and find out his/her take on events. I've been in a situation where my son told me his teacher had pushed him, when in fact he'd walked out of class throwing open a door which swung back and pushed him backwards. He was either economical with the truth or genuinely perceived that as being his teacher pushed him. It's therefore really important to remain impartial. I think that you need the opportunity to represent your son (if the teacher didn't allow him his say) and advise how things affect him. Although it's very easy to think the worst when hearing kiddo's version of events, I've learnt very quickly to find out the facts. It's also important to be able to convey to your son in the cold light of day what has actually happened i.e. try and encourage them to see a different viewpoint (not easy granted!). Lastly, I think you could be making a rod for your son back if you allow your son to stay off school. I've been asked to take my son home on a few occasions and have expressed my concern that unless he really does pose a health and safety issue to himself or others, then I'm not entirely comfortable in doing that since kiddo might think how nice it will be to go home and play on his x-box, watch tv, etc (trying to prevent him doing that would cause issues) – and that's the danger (he may protest about how bad school is because it's actually nicer/easier to stay at home). Picking up on others posts about bullying policies, firstly, find out what their policy is (most schools will have a booklet). I've found that some schools prefer to avoid the word 'bullying', but it's worth finding out how they deal with it. Again, if this were happening and nothing was seemingly being done to combat it, it's best in the first instance to meet with the teacher and headteacher. If nothing happens thereafter, after telling them you're unhappy with the approach or inactivity and that you intend to take things further. That would usually get a result. Failing that, Board of Governors and a letter to the LEA. At all costs though, it's worth trying to work with them than against them (not suggesting you are), but try and remain calm and articulate and open to views/suggestions. Again, all very difficult to do when you've a stressed out son to deal with that paints a very negative picture. Best wishes. Caroline

Hi Your description of your son is pretty much how my son behaved at that age. Things have improved a lot, but that's not to say that issues don't arise. There are a number of things that could perhaps be looked at: - giving him a packed lunch and, if possible, allowing him a quiet place to eat it - in order to avoid him being alienated, but so as not to overload kiddo, perhaps an older buddy or a circle of friends could be introduced (supervised by an LSA) - are there any clubs at lunchtime that run e.g. library, IT suite, etc (not for every day, but on days when he needs time out of the playground) – introduce social stories (check out Carol Gray's website) which would pictorially convey what is expected of kiddo, and also a reward sticker chart where perhaps he can earn 'golden time' i.e. when on a Friday he can have e.g. 10 minutes extra in the playground with a classmate for good behaviour or choose an individual activity It an incredibly difficult time when kids are just starting school. I found it was too much for R and though I've always had my doubts about him being in a mainstream school, he has progressed much better than I anticipated. Best wishes. Caroline

Hi Very difficult situation. When my son was much younger (he's 10 now), taking him to a soft play area or playpark used to fill me with dread. He'd circle other kids, then lash out. I think the easy option would have been to just not go back, but I felt that I had to teach R how to behave appropriately. I used to have to force myself to take him back, and every time he lashed out I'd bundle him in the car and we'd go home (with one heck of a performance in the process!). It took 8 months before he finally got it. I guess what I'm trying to illustrate is that that was a situation that I really didn't want to expose myself or my son to and one I wasn't sure he could cope with. Over the years, he's surprised me in that sometimes I have underestimated him i.e. I've assumed he wouldn't be able to cope with something, when in fact he has coped very well (strangely, it's been the situations that I thought he would cope with, that generally he hasn't!). In our situation, I've felt it's been best to tackle situations head-on in order to teach R how to cope with them. Obviously every situation is different and needs careful consideration. Likewise, if something doesn't work out, then it's worth putting on the back burner for another day. I'm in no way suggesting that your daughter can/should be forced/encouraged with certain issues, but I've personally found that by avoiding (as opposed to delaying) some situations, it means they kiddo can't learn to manage or cope. Best wishes. Caroline.

Hi We all live in a society where expectations are placed on us all in terms of social ettiquete (law, etc etc), and that can start with basic social interaction skills. For example, a child in nursery needs to be taught to share, sit down at story time, how to behave at snack time, etc etc. The same principles apply to adults (NT or otherwise) and extends to various environments e.g. whether that's living in a house with ones family, in employment, studying, etc. Ultimately to get along in life, we need to be able to express our viewpoint whilst being respectful to others (perhaps a rather extreme consequence, but wars can literally break out!). Inability or unwillingness to do so can cause all sorts of issues, which I believe ultimately affect ones happiness, employment/promotion prospects, etc etc. Certainly when I was a teenager, I had my rebellious moments, but learnt pretty quickly that it's so not worth ruffling feathers to make a point thats simply not worth making (the concept of moderation is there for a reason). C.

Hi When my sons asks when I will be home, I give him a time later than I anticipate I will actually be. Therefore if I'm home hopefully he sees that as a bonus! Also, when I'm out I tend to phone home and have a very quick chat with him to see how his day has been provide reassurance that I will actually be coming home. Best wishes. Caroline.

Hi Just picking up on your subsequent post – I think it's interesting that this woman has been out with your son since the 'incident'. I would encourage your son to detail in writing all contact that he's had with this woman e.g. where they went, what they did, if they were joined by friends/seen in a public place e.g. pub, etc. This could provide important evidence on the basis that it's unlikely that a rape victim would choose to continue seeing their attacker. I personally would worry a great deal about your son's reputation and potential consequences – if this woman's banding about serious allegations this could affect his social life, employment prospects, and a whole lot worse. In addition, as I said earlier, it's not unusual for rape victims to report incidents years later. On that basis, I would urge you to seek legal advice.

Hi I'm afraid I don't know what to suggest regarding your partner's family and getting K out of nappies. But, perhaps I can make a few suggestions on school issues. My son is nearly 10 and from P1-P4 R used to refuse to go to school, employ delaying tactics, etc etc. I actually found that the more pressure I put on him, the more badly he'd behave and mornings were very challenging. I did tell bim that just as I have to go to work so does he. I used to pick out all the positives of schooling/all the things he likes and 'big' those things up. Admittedly, I don't like being late for things and got to the stage where I felt that it wasn't worth WW3 breaking out, simply to be on time, but rather felt that it was much better for me and for school staff if we went in late with R being in a reasonable frame of mind. Very difficult balance to get right as I'm sure some might think that's a rather soft approach, however, it was constantly reinforced to R that we were going. I found that by providing more structure also helped, for example, I bought coloured sand timers to help him understand how long he had to e.g. get dressed, eat breakfast, etc etc. I think R is a lot less stressed in the mornings and for the past couple of years, it really hasn't been a problem generally (there can be issues from time to time if R has had a problem the day before, etc). Sometimes turning things into a game e.g. I bet you can't get your clothes on by the time that I've made breakfast (though dependent upon kiddo's mood!). Best wishes. C.

Hi I don't know what to advise/suggest, but clearly this must be a very difficult situation for you all. I can only assume that the neighbour/friend is backing the woman up because she's her friend even though she wasn't there. Whilst it's positive that the woman hasn't reported anything to the Police, one hears of instances where people complain months or years later about having been assaulted, and so I can see that you must be in turmoil over this. I would be tempted to leave things along, but can see why neither you or your son want this hanging over your heads wondering if/when this will come back to bite. I wonder if there's a local organisation where you could ask advise anonymously? The other side of the coin is that is this woman is telling individuals of her version of events, then if it's untrue, it amounts to slander of a serious nature, which could seriously damage your son's reputation and have consequences. Again, it might be worth seeking legal advice on that from that angle. Best wishes.

Hi Thanks for your post. I'm afraid that hasn't worked. I'm using an apple mac – don't know if that's relevant. C.

Hi Haven't a clue what I did, but I've managed to reduce to size of text, etc when viewing everything on this forum (my background desktop, etc remains the same, so I know I haven't globally changed the size of things on my computer). Had eye surgery a few weeks ago and am struggling to read posts, etc. Any ideas on how to rectify this or increase font size? Thanks. Caroline.

Hi AS someone has rightly pointed out that the school has a duty of care to ensure he's safe. But (and it's a big but), they also have a duty to meet his needs irrespective of whether he has a formal diagnosis or not. Don't know the history, but does kiddo have an Ed Psych? Have the school put anything in writing? If not, it's important for you to get this in writing as it could help with e.g. the diagnostic process, etc. Does he have audit hours for a learning assistant? If he doesn't that's the route I'd go down given school deem that he can't manage school trips. If he already has all of that in place, I'd continue pushing for specific support during school trips. I feel that children with ASDs in mainstream schools are all well and good, but the success of it is very much down to the support they receive in all aspects. I think some education profesionals place to great an importance on academic, when in my view I feel strongly that social skills are much more important (followed by reading, writing, etc). My son used to behave abominably and trips used to fill me with dread, however, I feel the only that he was able to learn how to behave appropriately and cope was because he was put in those situations but with a high level of guidance. The temptation was certainly there to take the easy way out, and I did that on occasions, however, I think it's about weighing things up and although something might not work, doesn't mean it's not worth revisiting. Perhaps social stories (see Carol Gray's website) might help. Given that people with and ASD can take in visual information better than spoken or written information, it's a good way of setting out this is what we're going to do and this is what you need to do. Best wishes Caroline

Hi Just to follow on from my previous post and pick up on some of the other posts... Initially my son was prescribed melatonin by his consultant. She wrote out a prescription and then advised on subsequent occasions to see our GP. I visited our GP who said he couldn't prescribe it. I therefore contacted my son's consultant and advised that our GP wasn't at all comfortable with prescribing it. She contacted him and advised that under shared care protocol, he was continue prescribing it. Since then, we've had no problems. I really feel that people shouldn't have to resort to buying it over the internet. I dare say that there are reputable sites, however, where do you start? How do you know which ones are reputable ones? One simply shouldn't be put in that position. I think your GP has been downright irresponsible and unprofessional in advising you to do that. I'd flag up the issue with the Paediatrician and see if there's anything s/he can do. Perhaps it's a lottery postcode issue? Caroline.