Gavin

Hi I thought we had put the problem of unlawful exclusions behind us with DS (AS, very bright) well settled in a special school where he is generally getting on OK. Lately they have had a lot of staff turnover and he has complained that the school is going downhill. Anyway today I received a phone call saying he had run away during an outdoor activity and that they had decided to send him home - could someone please come and collect him. I thought this odd as he has no history of running away but I went to collect him (c. 1 hr drive). What is clear is that an activity had been organised which involved putting the boys into groups, grouped with others that were not necessarily their friends or classmates and then getting them to roam the grounds looking for clues to a 'murder mystery'. They had been told in assembly that someone had been murdered etc. - anyway you get the idea. Basically it beggars belief - you could not deliberately design a less appropriate activity for children on the autism spectrum. DS and friends had decided they did not like the groups they were put into and formed their own. They then went off as instructed - looking for clues in the school grounds. Anyway the staff panicked and went looking for them. DS returned of his own accord, somewhat oblivious to what all the fuss was about. When I saw him he was apologetic about any trouble he may have caused but disputing some of the facts asserted by staff (who seemed to be trying to get their stories straight but were very inconsistent). When I arrived at the school I asked on what basis DS was being sent home - was it an exclusion? I was told no. I asked whether they thought this was legal because it seemed very like illegal exclusions we had experienced in the past. This question was sidestepped. It was clear that the staff were sending him home as a punishment - or rather as a sort of natural consequence of him supposedly absconding, although a senior member of staff admitted he had not done this deliberately... A shambles. I am a bit cross!

Mini trampoline, medicine ball and dumbbells have all worked for us to varying degrees. Freecycle is worth a look if funds are an issue - these things do pop up from time to time, in our area anyway. Also weighted blanket at night and weighted lap pad for sitting at the dinner table. Various fiddly and stretchy and squeezy things from Hawkin's Bazaar, although that type of thing tends to have a short lived appeal. Also, our son now does three sessions at a local gymnastics club each week, which helps a lot. This sensory stuff is all a bit strange but once we tuned in to it we realised it was underlying a lot of behaviours that might otherwise be categorised as 'naughty'. I really think that schools need to be more tolerant and keep their powder dry for the really inappropriate stuff rather than worrying about a bit of fidgeting, although I realise not everyone will agree. This book is worth a look, if you haven't seen it already: The Out-of-Sync Child : Recognizing and Coping With Sensory Integration Dysfunction by Carol Kranowitz All the best Gavin

"Our LEA has said, off the record, that they will never accept a parent initiated Statement process....." My jaw nearly hit the floor when I read this! The postcode lottery is so unjust. Our son (8yo, AS) has a statement (the request for SA was from us) and is in an independent special school funded by LA. This was achieved without any appeals or tribunals and has transformed his life and ours. Keep going, keep calm and keep records. Make sure they know you are serious and that you know your facts - your persistence will triumph in the end. All the best Gavin

DS is 7yo / school yr 3 and has been out of school so far since end of last academic year. The LA is providing 8 hrs p.w. of tuition by Vulnerable Childrens Education Service on their premises. This has been excellent but obviously too few hours and only a short-term provision. He has AS and behavioural issues including a history of attacking staff. He is very bright in maths, reading and spelling etc. but has poor social skills, finds art, handwriting etc. difficult and generally has a very uneven profile. He also has sensory issues but these have not been properly assessed yet due to outrageous waiting list for OT. The LA SEN panel met last week and, thank goodness, agreed to issue a statement. They say he should attend a special school with an autism background, also identified emotional / behaviour needs. The LA will send us a proposed statement and a list of schools shortly. I get the impression that this will be a long list. The school needs to be able to employ AS specific strategies to develop his social skills etc., be able to cope with / manage his behaviour, and also help him to progress in the curriculum subjects. Does anyone have any experience / advice on how to approach the process of finding a special school that will meet his needs? We are already in contact with Parent Partnership, so I guess they will help, but it still seems quite daunting. Also any specific school recommendations or ones to avoid would be welcome, (perhaps by PM if not suitable for posting!). We are broadly in the Reading / Bracknell area. It seems that significant travel or even a residential placement may be necessary. Thanks Gavin

Excellent rant - well said!! I am sure this is a familiar situation to many. It is exactly what we experienced with our son until things started to improve slightly at home, at which point they got dramatically worse at school. Then they were furiously demanding help from all the external agencies etc. Eventually two fixed term exclusions were followed by him leaving the school early as they stated they could not meet his needs. He is not progressing onto the (attached) junior school and is now in limbo, with the LEA behavioural support team providing a temporary solution while we await the result of statutory assessment... The HT at his infant school was very distressed by these events and I am sure she will be vigilant to stop a similar situation happening in the future. So my point is that schools really need to listen to parents at an early stage and not just when there are obvious major problems in school!! Things can change very quickly and the consequences can be pretty stressful for all involved. I am glad you have asked for Statutory Assessment (or the Scottish equivalent) and really hope your son gets the support he needs. Stick to your guns, confirm all conversations in writing and keep records! All the best Gavin

@Smallworld: The female musician you are thinking of is perhaps Pip Brown, aka Ladyhawke? She has been the subject of quite a few articles such as this one: http://www.guardian.co.uk/music/2008/sep/11/popandrock All the best Gavin

Fantastic news / About time too! My son used to attend a school that scored 'Outstanding' on all OFSTED measures. The Head Teacher and other staff were capable, well intentioned and highly motivated. Yet there was a marked lack of understanding of SEN and associated responsibilities and procedures. HTs' priorities are driven at least in part by the desire to achieve well in OFSTED inspections. Making SEN provision part of this is sure to raise standards and improve understanding. The additional right to appeal following annual review is also very welcome, although doesn't apply to us quite yet as we are still in the Statutory Assessment period, awaiting a draft statement. Thanks for posting this information. All the best Gavin

DS (dx AS, 7yo) is very high functioning in reading / arithmetic etc. He has major anxiety and resultant behavioural issues and is not currently in school. So far we have not informed him of his diagnosis but we wonder if it would help him if he understood more about his difficulties. What advice / experience can anyone offer about telling a child about their diagnosis? Thanks Gavin

Hello Having attended a meeting yesterday where it was decided that my six year old son will not be returning to his infant school following his latest exclusion, I do know how you feel. He is due to move to Junior School in September but at the moment it is completely up in the air. We have asked for Statutory Assessment but this takes six months after they decide whether or not to do the assessment, so a statement will certainly not be in place for Autumn term. My son does have a diagnosis of Asperger Syndrome. I do have a bit of advice based on our experiences, which you can use or not as you wish. Be proactive in ensuring that all the relevant professionals are alerted and that they talk to each other. Don't assume anything. Build up a file. I would say don't wait for a diagnosis to start putting strategies in place at home / school that can help your son to cope. A detailed visual timetable on the kitchen wall has been a huge help to us. Ideally if you can find someone (ask school / LA / local autistic charities etc.) with the Widgit software and a laminator then you can make something really good. Or you can use clip art etc. If you want I can send you a picture of our setup. If you use any behaviour management strategies, keep them direct and extremely simple, target one thing at a time and be consistent. As soon as you can (probably when you have a diagnosis), do get on the NAS Earlybird+ programme if it is available in your area. We are doing it now and it is helping us enormously. Make sure you understand the whole School Action / School Action Plus / Statement progression and remember that you can ask for a Statutory Assessment yourselves by writing to the LEA. This takes a long time so don't leave it too long if he is failing under SA+. Do look at NAS / IPSEA / ACE websites etc. for advice. Don't forget that all this will have a profound effect on your daughter and that you may all need to seek respite, whether this is from extended family or services such as Crossroads. Children's Services may be able to help / pay for help once you have a diagnosis. You may also want to consider applying for Disability Living Allowance for your son once you have a diagnosis. I am sure that you will also find lots of good information and guidance by asking or browsing past messages on this forum. All the best Gavin:)

Hi Kelly We have similar problems with our 6 year old son, who has Aspergers. We have managed to reduce the frequency and length of these events with a very simple time-out system which is consistently applied. He can do the time-out wherever he is, we can walk away. If necessary we hold a door shut to contain him, time-out then starts when he quietens down. The time-out is ONLY used for violence against people or things and never for anything else and is always applied even if out in public etc. At the same time we are learning about what underlies the behaviour and this helps us to communicate better with him, get him away from trigger situations etc. At the moment we are doing the NAS Earlybird+ course, in our area this is provided by a department of the council called ASSIST (Autism Spectrum Support something or other) but this may differ depending where you live. I expect you can find out via NAS or your local authority. This really is an excellent course because it helps you to see the underlying problems from the child's perspective, rather than just seeing the behavioural problems. We are also using a visual timetable at home to good effect. The Ross Greene book, 'The Explosive Child' is quite useful in understanding the triggers etc. and probably worth a read although it is a bit American / self-helpish. Don't get me wrong, we are still having quite a few problems but not as bad as before and we don't feel quite so helpless. Perhaps some of these approaches could work for you too. One other thing, is he stressed about anything at school and then bottling it up and releasing it at home? Best of luck Gavin

Hi Sarah I know you have probably tried all sorts of reward / consequences, time-out etc. strategies. You may feel that these have failed because he doesn't get consequences, subverts the system etc. That is what happened to us (I wrote about it on here in one the threads Karen A pointed you to). But, even though it failed before, since we have re-introduced time out, there has been a dramatic improvement in our family. The approach that made all the difference for us was to keep it simple and give the time out for one reason only i.e. hurting people or things. We don't ever use it for anything else. We have forced ourselves to be 100% consistent. Time out can happen anywhere, including in the street or in the car, behind a closed door, or recently behind a curtain at the Science Museum. Even on the occasions where things still get out of hand (a couple of times in the last six weeks instead of twice a day that we were having previously), he still has to do his time out after he has calmed down. This is good because it provides a break between the problem and the next activity. Another tip is to reassure him that he will still be able to carry on as normal after the time-out is over, for example if stopping to give time-out on the way somewhere, reassure him that he will not be late. He understands that if he hurts someone or something, he has to do the time-out. The extreme episodes have reduced in frequency by 90% and relative stability has started to return. The only negative is that apparently since he got better at home he has been showing more testing behaviour at school! We are continuing to reserve the time-out for hurting only and use a (very simple) reward system for encouraging positive behaviour, again focusing on one thing at a time. We have recently started a reward system for lights out at night, which is working OK. I would never have believed it a few weeks ago. By the way, have you done the NAS Earlybird Plus course? We are on it at the moment. I think it helps to understand the reasons behind the behaviour. All the best Gavin

I recently read Blue Bottle Mystery by Kathy Hoopman, ISBN 1853029785, and would recommend it. I now intend to read it to my boys, hopefully it will help them understand each other a little better. All the best Gavin

Hi Caroline It's mentioned in his Complete Guide to AS. He basically says you are taking away their only pleasure and there are better ways. He doesn't seem to explain exactly what these are though!! I am sure I need to read more thoroughly but find it hard to take it all in / decide what to prioritise etc. Do you have the Complete Guide to Asperger's Syndrome? If so I will find the relevant page number for you when I get home so you can read for yourself and get the context. Meanwhile I think we will be following your example regardless...! Gavin

Thanks for that Karen. You have confirmed what I thought about the 'relevant' consequences. Our son is obsessive about computer / electronic games (Sonic / Mario), he becomes obsessed with each one in turn until he has completed it. This is already managed according to a strict timetable and only appropriate games are allowed. I am a bit reluctant to further reduce his screen time as a punishment but I think that may be the only really effective thing. I notice that Attwood advises against restriction of special interest as a punishment. All these books etc. contradict each other though so I suppose you just have to get on with something and see what works. The person from CAMHS is not an AS/ASD specialist although to be fair she has over 20 years experience which will include contact with many AS/ASD kids. We have not received an awful lot of support so far although a multi-disciplinary meeting has now been called and there is a feeling that things are starting to happen. He is on School Action Plus and an EP is visiting in May to assess him in school. Here we have a system of separate Infant / Junior schools so he will move school for next academic year. A transition plan is in place and new HT is very supportive, of course this will no doubt anyway be a challenging time. We are also supposed to be receiving support from Social Services in the form of the Disabled Children's Team but as our allocated worker is off sick and has been since the day she was allocated to us (perhaps she had heard about us ), and her boss is also off sick, this has not been forthcoming!! Apologies for rambling on. Gavin

Thanks to everyone who posted advice. Having spoken at length to CAMHS we are going to try the following, initially focused on one issue only (violence): Violence = no warning, straight to time out area (sitting by the front door) Wait for 5 minutes (starts when quiet) If not quiet, add 1 minute up to max 10 If still does not comply = consequence The idea is that if we keep it simple and focused on one thing then he will understand it, we will have a greater chance of implementing it consistently and it will be less open to subversion. Something that CAMHS said is that the consequence should be relevant to the misdemeanour e.g. if he hits brother then the consequence involves doing something nice for his brother. My concerns about this are: 1. Can we come up with enough of this kind of thing that will have sufficient meaning for him to incentivise him to control his behaviour? 2. I would prefer to get the consequence out of the way so we can all move on rather than it being something hanging over him for ages and causing anxiety, resentment etc. We are going to discuss between ourselves in more detail and start in earnest this weekend. In practice to start with there will still be some times when he goes instantly up to anger level 10 for an hour. It seems that in those circumstances we just have to disengage as far as possible, try to keep everyone safe and give consequence when calmed down. Comments, suggestions welcome. Thanks Gavin