westie

Stragely enough a while ago, I was reading some old diaries I kept about J when he was about 4 and being assessed by CDC. At the time he was having trouble sleeping (night terrors) and this had been going of for a good couple of months and I wrote about letting our little dog, Oscar, sleep in his room and this settled him, until a certain time say around 6 when dog wanted to go pee, and then J would start screaming and getting angry because he wanted him to get back on the bed! Sadly Oscar passed away last year at age 13, but we have another dog, Seamus (who we have had as long as Oscar, and who is missing his buddy who he has always had around to keep him company ), and we have let Seamus sleep on an old sheet on J's bed a few times recently when he has been unable to sleep (nowadays J leaves bedroom door open, and doesnt wake when dog moves fortunately!) It is worth exploring possible reasons for him not sleeping properly. Another thing that affects my sons sleeping pattern in playing on the computer too close to bedtime. Even if he switches off and gets into bed at 8.30 his mind is on the game, and I am sure he dreams about them and it does mean he is not getting adequate rest. This is another reason that I use the "rules" (my hubby also into games, and he has told me that if he has been playing a "strategy" game such as age of empires he will spend most of night thinking/ dreaming about it and I think maybe thats what J does too.

Thanks Sally I will have a look, if you remember where you saw info that would be great. I have read a little about executive functioning but the info I saw didnt really explain how I could help... Have looked at lots of ADHD sites, and many people on the forum gave some useful advice in their responses to my post about my concerns as well. It is worrying thinking that your child may be punished for something they cant help/ cope with and that they have had no help to deal with (and by that I mean recognising and understanding needs such as sensory etc and finding ways round that, or being honest and recognising they cant meet needs and then the LEA letting the child go to a school which better meets their needs. I read another post on a different thread about the wording on statement, and vague woolly statements not meaning much and my sons current statement is a bit like that and think when his does need changing after his annual review in Nov (to reflect needs on transfering) I am going to ensure the wording is not so woolly and that the help he needs is clearly stated on the statement, so that if the statement is not adhered to then they will have to explain why!

This is just a suggestion that you could try (or please feel free to ignore) When he is awake and co-operating discuss with him that the current "I am only telling you once" thing isnt working, then ASK HIM how he thinks you could solve it and make a plan together. I agree some sort or reward/ sanction thing may be necessary to get things moving (i.e. okay you have made a plan with me and if it is not adhered to, then you are banned from playtstation -or whatever he most likes- for a period of time. Then next day, try again. You could even try writing this sanction into some "instructions" and get him to write/ type them if possible so you know he is taking it on board more and thinking about it. This way he does have some control over his routine in the morning, and he has agreed and has written a reminder of the routine, and the consequences of not complying with it. I use a morning/ evening routine chart for my 10yr PDA son, because it helps me enforce the "telly off at 8am" and "bed at 8.30pm" rules as I can stop the arguing with him and just say those are the rules, you know that they are on your chart. I am not saying he always in bed at 8.30pm or always tv off at 8am but its not so long after, not dragging on for hours. I also when these things are not followed and he is being particularly demand avoidant and next day he is really tired and therefore grumpy/ angry etc and he gets in trouble I point out to him that sticking to the bedtime routine and "recharging his brain" helps him cause it feels happier, and he can see logic. Likewise if I let him watch TV past 8am, we are rushing around, I get wound up and irritable this irrritates both the kids and then I end up discussing with him at later time how not sticking to it ends up with me being like demon mum and this makes him sad and again he is starting to comprehend that things improve if we stick to "the rules". Or an alternative to the "sanction" for non compliance could be that some sort of reinforcement/reward as part of the "rule" you agree, may help him. i.e. if he complies at least XXX times a week then he gets a mutually agreeable reward that he wants and you can afford to give (in terms of time/ money/ attention) and you can start with lower number of days and work up to more days in week. I am not saying these things will give instant positive results, and at first it may be a little worse, because kids do test the new boundaries, even if they have agreed them with you (and I know this from personal experience, although your son does seem to be a little more extreme in his demand avoidance!) The above is just a suggestion that I have found has worked for me and is not a criticism of anyone's methods. if I could do it all perfectly every day then I wouldnt be telling you in my post about the times when I do not reinforce the "rule" and subsequently lose it and get really wound up and frustrated both with him and myself!!! The bereavement will be affecting him and the rest of the household I would think and it is hard when you lose someone so close, but making some small changes and hopefully seeing some positive (even if little) steps may help you in some way XX <'> <'> <'> these hugs are for you manda, everyone needs some at times btw: my PDA son does have "cyclic" patterns of behaviour where he seems to get better for a time and then it changes, and things move backward and we have the negative cycle for a while. I am not always sure why, sometimes you can pinpoint contributory factors but not always, and I know a lot of other PDA parents for one experience similar.

Do the school send home (or put on internet) a list of the rules that if broken lead to detention, so that parents (of all kids) can explain in a way their child will hopefully understand??? I also agree that the school do need to be a bit more specific in explaining the reason for the detention, rather than saying "unacceptable behaviour" is the reason for a detention, otherwise how can you as a parent understand whether they are being "naughty" or it is related to their "disability" and therefore can intervene and discuss with the school a more appropriate way of tackling/ preventing it happening in the future, if perhaps the "punishment" is for something that is related to their own difficulties. Sometimes it might be related to issues with communication, social skills, organisation skills and I think that they should be working with the parents to help the child with these issues. I have been told that the local secondary school (mainstream) here gives out homework 4 times a week or so, and enforce detention if it is not handed in. My son often (after much effort on both our parts, and by that I am NOT saying I do it for him but rather have to help him plan and keep him on task as everything seems to be a distraction) takes homework to school and then forgets to hand it in. I suppose that if the teacher actually asked for it then he would give it to them. He also has other issues around organisation skills which I have posted on this forum about, and I am reading and trying things myself, and also seeking help and advice from school, as well as asking GP for referral to CAMHS. I am also going to look at this local school and other ones and see which will best meet his needs. This is on my mind a lot now, and selecting a school which will suit him (he wants to go to this local school as his peers will be there but things I am hearing make me uncertain as to whether he will fit in there) . If we do not help him with these things now and (if he still having difficulties even with input from now) they then keep putting him in detention will that help him, or will his anger issues (that we have worked on for almost 7yrs before seeing any significant and longer lasting progress) then resurface and he gets excluded??? If any child had received that many detentions over a short space of time you would think that school would bring the parents in to discuss it with them and try to find a solution... Have the school done this?? And giving a detention 4 weeks later???? How is any kid supposed to relate their "punishment" to their actions?? I am sure most behavioural books I have read (and professionals who have advised me) have said that if sanctions are made, they must be as soon as possible and achievable (i.e. you are grounded FOREVER probably not really effective you will be worn down before they are, and so in effect you are saying something but not properly enforcing it)With my son, I usually ban him from TV, PC and playing with friend next door for that evening, or if it is related to a task he has failed to do like homework or tidying then I say not until he has done it (he usually does it the same day so again it must be working to some degree). And then he has a "new day" the next day to try and behave positively so that he can do the things he likes when he is home. Another tip I find useful is to let him choose the time he is going to do the work (within limits, i.e. not at 8.20pm when his bedtime is 8.30pm so he would have no chance of finishing!) and so when it does get to that time and he starts protesting, I say "well this is when you have chosen to do the homework, so if you dont want to do it then okay but you cant play on computer, tv or go out and play till you have finished it. He knows I would stick to this, so he tends to do it, though I still have to be with him keeping him focused on completing the task again something I am trying to find a way to overcome....

http://www.kitesfamilysupport.com/ not specifically for ASD families, but offer support to families of children upto 13 (unlike Homestart/ sure start who I think only work with families with pre school children) they offer a family friend service, see below http://www.kitesfamilysupport.com/familyfriends.htm Thought it may be of use to someone in these areas.

Congratulations its great to hear such positive news XXX (cause its almost easter!) DX

<'> <'> <'> <'> Sorry to hear about this, not sure what to say but thinking of you and hope you get things sorted.

lots of questions in my reply sorry but just wanted to get a better picture.

<'> <'> <'> for you, it souds very overwhelming to me, and a big decision for you to make on your own. Have yr family stated the reasons behind their not thinking this is best step? What do they think are other possible solutions if that case? Do they acknowledge her diagnosis? Do you think that you can cope at home with her "full time" (thought sounds like you are anyway and having to deal with lots of stress caused by school situation? Is she okay at home otherwise? (if her bahaviour is a big issue it may be hard to deal with all the time) could you get respite from SS, or a home tutor for part of the time? Would another school be more suitable? I know there are others on here who are home educating/ or who have home educated and think this is best and may be able to give you some more advice and support.

J's mum has made some excellent points/ advice. I certainly would ask for a meeting and copy of his school records if you can other thing to consider is that if this school not able to meet his needs, then maybe a change of schools, and looking at options both mainstream (with or without autistic resource unit if any in yr area) or special school may be more suitable.... And requesting an assessment for a statement would at least mean the LEA will look at what the school are doing currently and it may prompt them into taking action. (perhaps that is why they are trying to put you off???) And as part of assessment process they get EP to look at your child and get evidence from other professionals etc as to yr childs particular needs as well as asking for input for you. re school saying he has help from someone most of time (even though it not possible in yr 3), well in my opinion 1:1 support in itself does not necessarily meet his needs (as they are finding). Does the supporter know enough about his condition and how it affects him, and willing to try different strategies and are school this assistant getting advice from others (educational psychologist/ autism outreach team) on how to help him/ make him feel more able to cope? What about the environment he is working in? If they are giving him the extra suport of a TA anyway at present, then would it help if he were able to work in a different area/ smaller group than he is in now? Maybe he needs more support at times where they are not currently giving it? Thinking about who is in the class with him and who might be a better person to sit near/ be friends with may help him to feel more comfortable. One or two carefully selected peers at a table with him may make him feel better than being with 5 or 6 who may be lively themselves and distracting (or they may be people he does not like for some reason so may be unwiling or unable to concentrate on his work for some reason)??? He is obviously struggling and its not fair for the school to make this excuse and then not do enough to help. I thought thats what statements were for, to give extra money above that they get for SEN kids without statement, so that they have resources to meet their needs... Aw well as the suggestions that J's mum has made, these contacts may also be useful: if your council has a "parent partnership service", or if you have a local NAS branch they may help and support you in dealing with these things and may support you in attending meetings with the school etc. Or if you have a friend or relation who may have experience in these things they could also attend meetings to support you. Getting EP in to see yr son sounds like it is needed, I am not sure if school have to pay for this and if they are being tight fisted maybe thats why they have not asked so far. Perhaps others can answer that and say whether this is correct... Good luck X

I hope you manage to sort something, cant imagine what you going through as not been in similar situation myself but hope you find a way to get the residential place if you truly think this is best thing for your son, after all you know him best. Your concerns about him missing all the social development stuff if only attending in day, as well as transport to and from the placement sound relevant to me.. Can I just ask, Am I understanding this situation correctly: LEA will fund day place but not overnight because they think that SS should fund it, but because you never have called upon SS then this will not happen???? I think some legal advice sounds like a good idea they may be able to help you investigate other options/ plan what to do next Good luck

Hi Pingu, glad things are going well for you with the home educating and wishing you luck with the visit

In my case I asked for assessment for my son, because at time I applied he was not actually at school, he also did not have a diagnosis of anything other than "emotional and behavioural difficulties" but I had been forced to withdraw him from one nursery, and had just took him out of another before he was also asked to leave that one as well (aggressive behaviour, biting) and I had a lovely early years special needs teacher who had seen him at playgroup and tried to give them advice and support. She told me I could ask for this assessment myself, and sent an email to LEA in support and including my last email to her stating my desperation and asking her some specific questions about schooling and next steps. They agreed pretty quickly an assessment was needed due to his EBD and he did get a statement which has been maintained since. As to "quality" of statement.. - well I think I did not realise how loosely it was worded and think when his statement is changed at end of year I am going to look into it all more thorougly and see if it can be a little more specific in terms of the help and support he needs and will receive.

Sorry its been a bad morning <'> , sometimes when its been building up for a while the little things turn into the straw that broke the camels back. My little (ASD) son also fond of carrying things round (even more so last couple of weeks for some reason) and in his nursery class it helps that each "group" (its a nursery class, 3 groups in the class overseen by teacher or nursery nurse) have a box into which any items a child takes to school have to be put in there till end of day. Because its enforced for everyone and my son knows where the item is and no one else can use it he puts stuff in there and gets it back and he seems to deal with it. Last week at Tumbletots it was different story, over him not wanting to put down a box or raisins. He either dropped them out of his pocket or they took them off him, and he threw himself on floor in front of equipment and no amount of persuading could bring him round so we had to leave early... Also he has been going out the front door on his own recently and taking himself to neighbours without even mentioning to me, so now am locking it to prevent him escaping. They are a real worry aren't they??. Can remember last week standing outside neighbours with tears in my eyes and feeling really low about things. As to why your has got better at home and not school, cant be sure but: Do you have any ideas what has/ may have caused the changes at home firstly? Are you using different "handling" techniques (you may not even realise sometimes, as this is the "norm" for you so sometimes you/ the family adjust your behaviour and lifestyle to fit what you know he can cope with and what will make it easiest for you?), are using calendars or visual aids or something to calm him at home? are there only older children or adults around him at home?, is it quieter than it used to be? perhaps if you can identify something different at home then you can question, "are they doing that at school as well?" and this may help you find one/ some possible reasons why he may be happier at home and not school. He is obviously very stressed, How long has he been at school? I agree its not helpful if they hold back from telling you thinks such as the increase in aggressive behaviour. Could they do a weekly diary or something? I remember when my eldest started school they kept an "intervention diary" detailing the incidents each day. I still have a copy of it now and remember once looking through it and tallying up how many "hitting", "biting", "throwing" incidents they had in a specific number of days (sept. to end Jan as he first started school. They used this as evidence towards maintaining his statement hours. So you could sell it to school like that - evidence towards his statement and also you could look at end of week - I go at end of each week to see eldests teacher and also ask about youngest on a regular basis, they may get fed up sometimes but at least I can then try and work with them to help, like you say, when things are not going so well. It is a really good idea to start researching schools with ASD units so you can name on on the statement if you think they may be better suited. Are you in contact with any parents of ASD children in your areas? Or is there a "parent partnership" (work for council, impartial and give advice about schools and statements to parents of kids with special educational needs) or a local NAS branch - they may help you to identify appropriate schools or give you opportunity to speak to other parents?? My local council website lists schools in area, including "special schools" thought not sure whether it easy to see which mainstream schools have ASD resource units (so you could check yr local council website they may have similar, also you could get parent partnership contact details, for my area they have a section about "special educational needs and it tells you about parent partnership there). The NAS website may have a list in their directory so you can have a look there. Take care, hope things seem brighter later on and that yr son is a bit happier too X Also sorry for long reply, I get carried away!

My eldest son was statemented in time for him starting school (full time foundation stage) at ~4 1/2 . I requested the assessment for a statement myself after someone told me I could, and at that time he was not diagnosed with anything other than emotional/ behvioural difficulties (he was still being assessed, could not pin down diagnosis even after almost 2yrs - PDA not commonly recognised) I told them all about his difficulties with these things at playgroup. For example, I was forced to withdraw him from a private nursery, and then pulled him out of a playgroup as I think they would have asked me to as well, and then he went for a while to a nursery suggested by a early yrs special needs teacher, who gave him a bit more support and had experience. He has been statemented ever since. I sent with the application medical reports to give them more detail etc, he had not been seen by the EP at that point, he was seen as part of the assessment stage. I agreee with other responses to your thread.If your son has learning difficulties ("diagnosed", so to speak) and you have evidence of other difficulties, and you can give examples etc (or school can provide evidence to support your claim) or you can also get a health professional/ teacher dealing with the child on your side to support this request and provide further evidence as to their difficulties, even if they do not have a specific "label" fixed yet then they will listen to you. I think if the school ask on their own and you/ someone else do not back them up then they may not be successful. But if you are, and they also support you and you have some info. from assessments etc. then it is not beyond hope that she will be turned down. (for example the early yrs teacher I mention above sent an email supporting my application for an assessment, along with an email I had sent her updating her on the difficulties he was having at the playgroup I withdrew him from, and where I was asking her "what could/ should I do next"!) Good luck X

I too have heard positive things about webster stratton parenting course - there are sure start centres who offer this in my area, and also a local mental health team who work with families.

Good luck, hope you get a positive response from them <'>

If you have a parent partnership they may be able to help and advise, or contact NAS branch in yr area who would be able to point you in right direction to get help from outside if you feel you need it (i.e. support during visits to school etc)

btw your daughter sounds very much like my son at that age - my eldest with PDA I mean. You must be handling her better at home if she co-operating and not having meltdowns it must be either the environment she cant cope with ( or it is the teachers handling of her that needs correction. It is really important with my PDA son that we be less directive and make him feel he is in control whilst being "manipulating" ourselves in how we approach situation to get the outcome we desire and reduce the anxiety he experiences by him feeling that others are in control! (also flexibility to learn and use number of strategies and switch tactics if one thing is not working) Input from the autism outreach team would help with either, perhaps teacher may listen if they are giving advice on how to handle her. As things seem to be going well for you at home in that she is not having the meltdowns etc, could you explain to them how you manage her at home and they may be able to try some of those strategies for themselves? Or on reflecton your opening post suggests that you may have done that and they ignoring you... Have you done earlybird course? I did and its really useful, they talk about ICEBERG technique to analyse behaviour and understand why your child reacts a certain way. The iceberg is a simple drawing of an iceberg triangle with small top part above line - represents obvious visible thing -and in this you write the behaviour you are analysing i.e. "she had meltdown about going to toilet" then underneath the line you write the "hidden" stuff - this is the important part where you brainstorm all the things that may have caused/ contributed to the behaviour. This helps you to focus on real causes behind a certain behaviour, and plan on what you can change if this is possible, or plan strategies that will better help her/ her teacher cope if it happens again. The school certainly could do with learning this: the incident you describe about the toilet has not been fully understood by them has it? perhaps there was something in the toilets that scared her/ raised anxiety and that is why she changed her mind about going. Unless they stop with the mindset that she is just being difficult / manipulative and be prepared to accept she needs different handling then things are going to remain the same. This is sad... If you do know a bit more about the toilet incident (and because you understand more about your daughter and how/ why she may have responded as she did) could you possibly "brainstorm" and write down all the reasons/ things that could have caused the reaction she had, other than "she was being manipulative". They may not fully understand that little things, esp. if child in anxious already, can cause major meltdowns. Someone else unexpected in toilet may have caused her to not want to go, toilet may have been dirty, teacher may have got too close to her, maybe too many verbal commands when she unable to deal with it, noisy corridors she could not cope with etc etc etc) Also one last thing: reading some more about PDA (there is some info. on NAS site, plus links to help forum and educational handling guidelines) may give you some useful strategies to try / suggest to school. Know this is not diagnosis but yr description of her behaviour leads me to believe these worth a try and may help (certainly cannot harm to try!)

Hi, <'> for you. I am sorry to read about the terrible things yr daughter is experiencing at school(in my opinion the way the teacher is acting is awful - the caravan should indeed be somewhere to go if she needs to retreat not a motivation) and why cant they use pop up tent, other quiet area - my son used to go to a small area outside head office when he was in infants school - , where she could use music to drown out noise, or some other calming activity till she is able to come out again and where she can be safe until she ready to move back into class.. In yr meeting with the head (or perhaps phone if that teacher going to be in meeting and you do not want to say in front of them!) could you ask whether it possible to move her to another class in same school. With my eldest son, the teachers handling of him makes all the difference, and a more understanding teacher may help her to remain in school till you move with less stress and outbursts , I can see yr point about not moving her to another school at present if it will mean another move after, also not sure of your circumstances which may mean this is not possible but .....have you considered whether you can home educate her till you get statement sorted, and then when you move you can find new school in new area that are able to meet her needs enabling her to get away from horrid env.? Perhaps if not too far a move from yr current home, then would LEA consider transporting to and from a school in the area you moving to, so you could start looking for suitable schools as soon as possible and avoiding another move for her..... I know someone who had to do that after the school relationship broke down so bad and she described it as a positive experience. At this time of home ed. her child was diagnosed, a statement put in place and they found a placement in a school with a resource unit attached, and child is still in same school,. She had not done anything like it prev. but remember she got good advice and support from some home ed. group (cant remember but could ask if you were interested but think there is info on her about home educating) I am not sure how the statementing process would be affected by this, would you be supported in any way if you did this such as home tutor etc? I have not experienced home ed. myself and it may be something you would never/ could not consider but just thought I would post it as a possibility as it seemed to be of benefit to my friend. (think the overprotective mum/ parent feeling must be common to many on the forum, I too get that feeling esp. when I talk to school!) Take care and good luck with the meeting on tuesday X

Great news on him using the trampoline! One of my friends is currently using a kind of modified behaviour chart only for aggressive behaviors as this is issue identified as one needing action more than others (you cant work on everything at once sadly!) where child gets rated at regular intervals (1hr intervals before and after school, 2hr intervals on weekends/ hols), with a 1 being "unacceptable" (violence to others) 2 being "not good" (bullying verbally/ provoking, and damaging belongings) and 3 - "excellent", either not getting angry, or using acceptable alternatives to dealing with anger (like your sons trampoline thing!!) My friend has listed under the chart what each rating means, and also listed alternatives for her child to try when they are angry (hit a pillow, go outside and scream in garden etc etc etc) to help her. Then at end of week total is looked at and if child gets a certain amount of "3" ratings and no more than five "1"' ratings (chosen the amount carefully to minimise aggression and also not so out of reach at first so needs to be fit to the child, so to speak and also needs to be adjusted if child has moved forward or back to try to keep it working) the child gets a "reward" from a list also displayed under the chart(which the parents talked through and agreed together with child to ensure the rewards is something they really want, which will motivate them and is also agreeable to parents!) My sons school used a slightly different version of this to help my son with anger within school , which seemed to work rather well so we adapted idea to above. For my friend its early days but it is making her child think more about the behaviour and other ways to deal with anger.

http://www.autism.org.uk/nas/jsp/polopoly.jsp?d=432 the above shows some books on sale at the NAS bookstore about AS and emplyoment http://www.amazon.co.uk/Mental-Health-Aspe...0642&sr=8-1 This is a book for sale at online bookstore, you can actually have a look inside the book at the index etc and a little of the content. I am sorry I have not read these books, but you may be able to loan them from the library or perhaps from your local NAS branch if you have one and see if they are of any use. Or perhaps someone else on here may have read the books and can post as to whether they have been useful

They are branch officers by the way, not branch co-ordinators. Knew I had the title wrong but cant seem to edit my post now!

Hi. Just an update. I managed to attend a meeting yesterday at the Rotherham branch, which is held at Meadows Children's centre, Catcliffe (near Catcliffe Primary school) The meetings now start at 1pm to 2.30pm (run each fortnight, next one 27th March) - not 12.30 as I had read previously - I turned up really early, not having been bright enough to ring and enquire beforehand to confirm start time! But it was well worth attending as I met a number of other parents, the branch co-ordinators were really nice and gave out some useful info. and seemed to really be wanting to raise awareness of autism in the area and have a number of plans to help(library where parents can loan books, are hoping to have a system for loaning equipment to try on your child before you invest in what can be expensive items which may not work HOW BRILL IS THAT!) I met a couple of young men with Asperger syndrome who also attended the group, and this was great for me as I cant say I have ever met anyone of that age with the condition and it was interesting to learn about their experiences, and how they are helping others. It gave the people attending the chance to air any particular issues they were experience and get advice and support from the people running the group and other parents who had possibly been through similar (for example listening to some of the parents made me again aware of how careful I must be to ensure I select correct secondary and ensure his statement reflects accurately what his needs will be or it could so easily go pear shaped, plus because it was local area I knew it could be same or similar for me as well!) They are getting someone in at next meeting to talk about eating issues and they asked everyone for suggestions about future speakers/ issues that they could ask someone to come in to discuss and also told us about some NAS HELP courses they are hoping to run in the area So I would recommend anyone in the area to attend if you can, I am def. going to try and go as often as I can!