westie

Hi, my son was given a "time out card" which he could use at school if he needed to get out. Various themes have been used over the years to signal that he needed time out. Would imagine that as long as school agree and are made aware of what it looks like and how it works (is it to be used by him, or both him and teacher as they may recognise warning signs before he does and head things off before meltdown) then the format of it (pokemon, other picture, words only) may be of his choice/ reflecting his interests. His school teacher/ head teacher used to show a yellow card to signal time out, but this used to throw him off at deep end cause he related it to being in trouble like at football (rather than time out) but I suppose this may work for some... A designated area to go to that is calming to him is important, going to toilets or something is not good idea - if my son did that and someone came over to speak to him while he angry he would explode at them (verbally and/or physically) A couple of things that may help him to calm are a sensory book, if he likes that kind of thing. I am thinking about pages with textures such as bubble wrap, velcro, fur, sandpaper/ ridged card stuck to them that he can touch, and which may help to calm him down - if this would work he could keep it in the area/ or in his bag as it does not have to be a big page) My sons school made on of these and he did like to touch the page with bubble wrap. Music may also help to calm him. Above is rather like Kazzen has described in her post, which seems to be a good, well thought out and planned system (wish I had read this a couple of yrs ago!) When I was in my son's class last week I also noticed on his desk a keyring type thing with 3 pictures on with different coloured faces, one was red which said something like red face: "I def. need help with this", one orange face "I am not sure about this", one green face "I am ok with this" my son is 10 by the way I think it is for him to communicate with the teacher on how much help and support he needs with a particular task, which means he does not have to speak about it..... this sounds similar to Chris' card

Congratulations on yr new arrival X

found following books at amazon, though not sure what they are like to read and whether they will answer your specific question. Perhaps you could have a look at yr local library before investing: Growing Up on the Spectrum: A Guide to Life, Love, and Learning for Teens and Young Adults with Autism and Asperger's (Hardcover) by Lynn Kern Koegel (Author), Claire Lazebnik (Author) Hardcover: 400 pages Publisher: Viking Books (19 Mar 2009) Language English ISBN-10: 0670020672 ISBN-13: 978-0670020676 Product Dimensions: 23.5 x 16.1 x 3.5 cm (on second thoughts you can't loan this book yet as it is not released till mid march, unless you can persuade them to order a copy...) Social Skills for Teenagers and Adults with Asperger's Syndrome: A Practical Guide to Day-to-day Life (Paperback) by Nancy J. Patrick (Author) you can look inside this book at the chapter list, part of first chapter and index on amazon. it seems to cover things like relationships, dating etc according to index. Adolescents on the Autism Spectrum (Paperback) by Charlotte Moore (Foreword), Chantal Sicile-Kira (Author) review of book by reader says: An essential read, highly recommended, 31 Dec 2007 By J. Spencer I found this book to be enormously helpful. It contains a wealth of resources and strategies which are suitable for individuals of all ability levels on the autistic spectrum. It tackles difficult issues such as sexuality and teen relationships/ dating in a practical, straight forward manner, drawing on the author's personal experience with her son. Sicile-Kira's advice is positive and pro-active. The information presented is well balanced with supporting evidence/ leads to direct those readers who would like to do more research in to a particular area. Topics covered include: how ASD affects adolescents on the spectrum, family life, sexuality, dating, grooming, personal hygiene, secondary school, preparing for life after secondary school, strategies, treatments and therapies to help adolescents on the autistic spectrum. The book is also of great benefit to parents and professionals working with children who have not yet reached adolescence (the 9- 12 year olds that Sicile-Kira refers to as `tweens') because it helps highlight the issues to consider and prioritise in terms of teaching new skills for adolescence regards D

did they explain why they gave you lower rate even if they say that you meet middle rate criteria?? (or am I asking a silly question here)

www.eric.org.uk is a useful site to look at regarding these issues. Someone told me about this ages ago, but I assumed it was just relating to bladder control, but checked it out and there is useful advice (and leaflets) about constipation etc which I found useful.

A useful website I found about ADHD - inattentive was http://www.goaskmom.com/ it has some useful tips on it about how to help your child to focus etc. tips are from parents who have used this. suggests things like taking a picture of what a "tidy room" looks like so your child has a visual picture to use as a goal/ standard lots of other tips as well!

I am not sure whether I have read this or have adapted the idea from something I read - have been reading a lot lately both books and online. If I find out what it was I will post the source of the idea! I will also post about how things are going with this idea, and hope anyone else who thinks to try it will post to let us know how they are doing as well. The stop/ think words were suggested by a professional via another forum apparently its a technique used with ADHD children where words are on opposite side of a card, and you put the card up where child will see it and (hopefully) it reminds them to pause and think about what they are doing. I figured if I laminated the STOP/ THINK words also and put them on the keyring before the pictures it may help him to concentrate on the pictures more.... I started off doing drawings with kids coloured pencils but they were so bad I did not want to embarrass him or myself by putting them on the front of his bag!! , then I thought about taking pictures of his actual belongings with my mobile phone! - they are much nicer to look at than my dodgy attempt at drawing the items,

I will be interested to learn what the conclusion of your question is as I have posted another thread on here about my 10yr old and I am asking as to whether certain traits in him that fit ADHD inattentive diagnosis (in my opinion) are part of ASD/Pathological Demand Avoidance and its associated difficulties. So I am wondering as (I think) are you that at what point does it become more than part of ASD and enough to diagnose ADHD as a co-morbid condtion (and would treatment/ advice given be different because of this?) Your post about taking all day to do one page, and the comments about it not being more fun make me think about how hard it must be for you. This is very like my son who will spend 4 times as long trying to avoid doing something than it would to just get on and do it (I have put this down to his PDA diagnosis as "demand avoidance" is key part of condition) You have done really well to last 4yrs without proper support and I hope with the help you receive now that you continue to do well in your course. Regards, D

jonathan: reading from the start of the thread to what you are posting now sounds like things moving forward in positive way, and changing things has started things moving forward (I also read your post about the healing, is it Reiki?). I also think that what bid and many other have posted about picking battles, being firm about certain things etc and being clear about what rules are is sound advice. The book "the explosive child" talks about this sort of idea, putting certain behaviours in baskets - A for things you cannot ignore, B for things to work on, and C which are things it may not be worth battling over (well thats how I remember it simplistically, cant check have loaned it to someone though!) . My son has behavior issues these have reduced a lot lately poss due to a number of things, or maybe a cycle of good behaviour (though I think/ hope it is more than just that!) I have tried lots of things as have school including various anger management books/ behaviour and reward systems etc for NT and ASD children. It is hard work esp. to establish the boundaries when they are not used to the idea of consequences so I think you should be really proud of yrself and keep battling on (as we all do!). Some interesting posts on here, lots of different ideas which is good because one thing does not work with every child! With PDA children you have to remember and use a variety of different things as what works one day does not always work the next! Am now trying to help youngest as he has some behaviour issues. For some reason seems as hard the second time round, even though he is a lot better than J was at that age in terms of level of aggression and anger! So reading this is helping to reinforce it in my head as well. Good luck and hope things keep moving forward X

Hi Mandapanda, in response to part of yr reply as shown above, I have an idea perhaps you could try... Before the trip you could let him research the place on the net/ using a map he has got previously or something and then you/ the family and him can then agree in advance which areas he (you all) wants to visit, and take his plan/list with you which he has prepared??? Maybe in the excitement of the actual day it may not help, but then you will be able to say that he knew and he had control/ decision over which bits he wanted to go to, and you are sticking to the plan this time and that he could plan to go to other areas on the next visit you make???? My son likes to be in control and so I have learned that sometimes letting him make certain decisions helps him feel in control and less anxious - and when he has chosen to do his homework at 4.30 on sunday for example, then he cannot argue with me about it, as he knows that if he does not do it he will not be allowed out or to watch tv/ computer until he does. ( I still have to stand over him as he distracts himself any which way and often just needs guidance to stay on track/ understand what is being asked). Does not mean it works 100% and we never have arguements it just makes it easier if you have decided when they in calm mood and receptive what the rules are/ the plan for the day is, and what (if any) are the consequences of not sticking to the rules/ plan. your post also reminds me of when i need to go shopping and j has to come - he tolerates it now but moans all the way round (how many items do we need, have we got everything etc) - I try not to take him if I can because its less stress for both of us!! This thread is interesting reading, lots of good suggestions and advice that I am trying to take on board!

Hi, just wanted to let you know that I have made something that will hopfully help him to remember what to take to and from school each day/ week. I used a keyring with his name on that he hangs on his bag anyway. I printed out in large font the words STOP and THINK Then I took photos of his bag, lunch box, coat, fleece, homework folder, pe kit, school book then used powerpoint to make into card with words under reminding him to take and fetch home each day, or take on monday and fetch home friday (pe kit) as appropriate. Printed out, laminated and cut to size (not perfect but good enough) then I punched a hole in top left of each one and attached to the keyring. Idea is that he will look before and after school to make sure he remembers everything (sure he will need prompting to look by me or teacher at first but hopefully he will start to do it without a reminder).... Its a start and I will let you know how it goes. Still waiting to speak to his teacher, but am thinking of writing down all my concerns (the post on here is a good start) and then sending to school and or the GP to see if they think he needs a referral/ more help..... jb thanks for your reply. Thats my dilemma really, as I know that these things are associated with ASD, but other children have been diagnosed with both ASD and ADHD. On the NAS website about this topic it looks at opposite - children diagnosed initially with ADHD that is treated then when less hyper show more ASD traits.. Well James was hyper when younger but has calmed down a lot, but still fidgets etc and runs off in front all the time, gets a bit excitable, but it is the stuff associated with the other type of ADHD - when I look at the criteria for ADHD inattentive I could tick all the things that happen quite frequent and sure school would be similar as well, but again is this true of most ASD children?? aaaarrrggghh i am going to stop thinking and just try to work on the things that are an issue. After all change in label may not mean a change in management technique anyway. Also I have always thought that if children sleep fairly well they cant have ADHD, but a book I read has suggested may not always be the case (and he does sleep well on the whole, ilness can interfere and reading old diaries he had a few months around age 4 of waking often due to night terrors) 8.30pm to 6 -7am is his typical sleeping pattern on a weekday - getting him to bed has been problem but use timetable now and have learned to deal with the delaying tactics such as asking questions/ talking about something - I tell him that if he late for bed he will have to get ready for bed even earlier next day so that he will be ready on time, this usually works! Thanks again all you who have helped, and if anyone else wants to add something positive/ less successful that they have tried please do it will be a great help!

Good luck with getting a statement, glad your teacher is in support in terms of him needing one, that is part of battle. I also agree it needs to be in place before secondary school. We are lucky in that my son has been statemented since foundation stage, and hopefully it will be maintained for his move to secondary (well it will be amended in dec this yr to reflect transition from primary to secondary education thats why I need to get things in place now even though he still only in yr5 at present. The things you mention you are worried about (moving to different classes etc) are some of the things that concern me with regards to my son's move. His behaviour has been much better over last few months, making other issues more noticeable, but I am thinking if he is not properly supported then the behaviours may resurface.I am going to visit schools and ask questions and try my best to get his statement to include all the areas he needs help with. of course thats the theory, whether it will be same in practice I can only hope XX Take care

That is such sad news, , my thoughts go out to the family.

I am dreading time when my youngest starts full time school and has meals there, as he is also really fussy about food - he will not eat bread at all. At the minute he has dry cereal, sliced ham and cheese biscuits or tinned spaghetti for lunch (v rarely he will have a sausage roll). If given a choice I think he would live on tinned spaghetti and custard creams (he also does not like it if bits have fell off!!!) There are a few other things he will eat: yoghurt, nuggets, sometimes fish fingers, sometimes chips. He will not eat bread in any form so sandwiches are not an option (it was doctor who suggested that we give him savoury biscuits with meat instead. - and the meat thing is funny. Boiled ham ok, slice of chicken breast not ok -unless I cook spaghetti in tomato sauce, and he will eat chicken that way (or of course it is in the form of a chicken nugget!) The healthiest thing he will eat is spaghetti bolognese. If I make it myself I can sometimes sneak a bit of veg in there and he will eat it (he will not eat veg on its own or in any other dish). If I made it myself it would be mince beef, peppers, onions, mushrooms, sometimes courgette and sauce made from passata and herbs. I have to cover veg with meat/ pasta so he cant see it, therefore I have to chop it small. He will eat chilled/ frozen spaghetti bolognese, has to be long spaghetti he will not seem to eat the ones which have shaped pasta in them??!! In terms of healthy lunchbox, yoghurt and fruit flakes/ school bars are about the healthiest thing I could get in there. He did eat raisins for a time but will no longer do so. Only way to get fruit in him is in a yoghurt or as apple juice/ orange juice. So I would put a carton of juice in there (of course then I have to worry about causing tooth decay because of acid in the juice! ) spilling food is a problem he freaks if it drops on his clothes or hands and strips off then, so he always wanted you to feed him. He has been a bit better lately and feeds himself in a morning (sometimes evenings when he is more distracted I feed him more as he would just leave it to play otherwise). I think this improvement is because he is more able to hold spoon steady (he has hypermobile joints/ low muscle tone so seems to find it difficult to hold things properly/ steadily)

Paula, I too am thinking about you. There are many others who have posted some good advice about getting a carers assessment, seeing CAMHS/ a doctor for yourself to get support. I hope yr evening is a little more calm, and that you can find a way to move forward XX <'> <'> <'>

It sounds like it to me!! My son does not do anything like that, he hates writing and does not seem to have any real desire to draw etc either. I have also posted about his poor organisation skills etc in another thread on here so this makes sense to me that he would not do similar thing to yr son. I know a girl, 9, with ADHD who likes writing lists (mostly planning games/ special events/ making secret clubs and rules - and heaven forbid anyone who should not follow them or if things do not follow her plan) and she also writes list of the things in her make up box, like "4 lipsticks, 3 eye shadow etc. but hers seems like a control/ anxiety reason to write and yr son seems to be more a sort of obsessional/ ritualistic thing. As you have pointed out, even though the characters change (and ASD children can swop "obsessions") the structure of the list is always the same. Does he say why he chooses particular characters for particular family members? Just wondering if he associates a personality trait/ facial expression/ action with a certain member of the family.... do you see any sort of logic/ pattern in terms of the character he has chosen for the family member? - not really a helpful question I just wondered thats all. Are the characters from cartoon programs always, or are any from real shows like a soap or a film starring real actors? If so do you think that its because cartoon faces/ responses/ characters are more predictable than real life people or characters so he may just like them for that reason (another thing to support your case that he is on the spectrum??) Sorry have not said anything useful here in reply to your post, but I think it is a really interesting thing you have posted about and it has set me off thinking (not good at this time of night it will keep me awake! )

Hi Fiona. PDA is Pathological Demand Avoidance Syndrome, find more info here (link to NAS website): - http://www.nas.org.uk/nas/jsp/polopoly.jsp...581&a=17634 Was a long road to diagnosis for eldest. It started when he was about just over 2 and the nursery he was in was concerned about his behaviour. He was assessed at child development centre,I had to go on parenting courses (they said bonding may be issue as I worked full time), then when he was almost 5 a speech and language therapist at the child development centre showed us checklist for PDA and we ticked every box! At same time the local CAMHS team were going to diagnose ASD, but guidelines for helping PDA children are different in some ways, plus the CAMHS team do not recognise/treat PDA and we were passed round for another couple of years until our health authority funded a diagnostic assessment at Nottingham (Elizabeth Newson centre- experts in PDA, autism and other communication disorders) and this confirmed he did have a pervasive development disorder and met criteria for PDA.... As he was so young when first attending appointments he probably is used to going to doctors. Imagine if problems are recognised at a later age the child may be more reluctant to go to appointments. This sounds really tricky for you. Do school recognise his problems? Can anyone else support you? Its a really hard battle sometimes, know it from my own experience and that of others I have got to know via a support group I attend, and some of the parents at school who have concerns about their child/ren. I learned that you have to keep phoning/ asking/ nagging! as no one else will do it, and probably because they have such large caseloads they will put things off till someone starts giving them hassle about it (thats just my view, if you are a professional reading this perhaps you can explain real reason why this appears to be case!) Anyway if you want to "chat" about it further, please send me a private message!

wow he has done well to deal with all that. Hope he is soon fully mended and back at school. take careX

Thanks Sharon for taking the time to reply to the questions. Reading your replies has given me ideas of another couple of things to try (move the things he leaves around for a week, to see if he realises is one thing I may try, though there is so much I am not sure where I would put it, ). Glad you have found this forum and are finding it useful and helpful. take care, Debbie

thanks for the warning, i will keep that in mind!

Thanks, keeping a diary of everything is also another thing i think may be beneficial for me to actually properly assess how he is affected and how often it happens. Obviously from yr replies there are many of you with children similar, Karen is right we could make a club!!! Anyway if I find any info. that has not been suggested on here, I will post it. X

Thanks, J'smum for your suggestions to help. I too am thinking about calendars/ schedules etc. am meeting with teachers after hols as they supposed to be asking about ideas to help. they never ask him for homework or remind him about stuff or use some visual aid, so its not helping from that end. found a website about adhd innatentive, it had some useful info. on there too. he does have some sensory issues, less so than he used to. he not a "huggy/ touchy" child and often strips off. he does sometimes hug me, usually you have to ask but remember his aunty almost crying once when he hugged her for first time unprompted about a year ago. not sure how weighted blanket would go down. i use sand timer with youngest, suppose i am assuming he too old for such things but they may help. tonight i feel guilty. earlier he had a friend round and they came down for tea at about 4pm. I told James to get his trousers on when he finished his tea, so that we could take his friend home and to go to nannans, I also said his top and socks were already on the floor near him so he did not need to get any more. After about 15mins I knew they had finished and went in to find him messing about and asked him to go get some trousers on to go (he was in shorts by the way, not totally naked!). Again i reminded him his socks and top were on the floor in room. When he came down he had new top on and new socks(though he had got the trousers on as well!), i told him off as I had told him more than once to not get new stuff out, and I am sick of washing clothes. My hubby then told me off for overreacting and getting cross. Thinking about it i do feel quite bad and mean, but it is so frustrating. I feel often like he is deliberately ignoring me. I know its more likely whatever is going on inhis head is more interesting/ important to him. once his uncle gave him five pounds and he lost it within about 30 mins...... he also loses toys and can't spot things that are right in front of him, its like when you ask him to find it he panics and is so focused or stressed that he cannot see properly. there are numerous other things about his organisation which i have not mentioned. His dad is v similar, when i first met him (me 16 him 18) he lived with his brother and their house was a right mess i used to go wash pots whatever. i am not a neat freak, ask anyone who knows me, lol, but I am really worried about how he will cope in secondary school/ in a job and as an adult living independently if he loses money, can't plan etc!!!! thats why i want to work on it now. I know like many of you it takes time to get through - has taken from age 2 to 9 to see significant improvement in behaviour (long may it continue) so I am used to chipping away and taking small steps to goals! Earlier I was more concerned about his extreme behaviour. Perhaps I just need something to stress about..............................................

wow, never asked my son something like that, perhaps when he is a bit older and more willing to talk he will maybe remember stuff that I dont know/ have forgotten. Is he also planning on writing a book, or is it just for his own benefit?

I am a bit of a hoarder and have saved most of letters/ info. relating to my eldests assessments/ diagnosis/ statement etc. i found amongst them a "intervention diary" from his teacher in foundation stage 2 (age 4 1/2) and a diary written by me, plus a home/ school diary filled in by me, my mum and the nursery nurse at the special nursery at the hospital where he was assessed. I read through them and it reminded me of lots of things I had forgotten. For example I always tell people that both kids are and always have been good sleepers, they do not wake up, but reading my diary I read that for about 3 months around time of J's fourth birthday he was waking 2/3 times a night with bad dreams and wanted the dog to sleep in his room. Then each morning he would have a fit because dog wanting to go out for a wee about 6am and he did not want him to...... It was funny reading about when he went to visit his grandad in a care home. usually front door shut and you have to press button, but one day it was open for ambulance man to wheel someone in. He freaked out, saying "door open, james no like it" etc and would not go through until someone closed door so it was like he was used to. Also, in my diary I recall a particular incident at the vets surgery when I took the dog lead off him because he was dragging the dog, and he went up and hit a man stood nearby (stranger) who then proceeded to make comments about giving him a good hiding if he were his, etc etc etc. I still cringe when I think about it now. Reading about how many times he hit and bit people was shocking, and made me realise again how far we have come. The reason I started this post though was that one entry by teacher stood out for me for some reason ...James got upset during the maths focus when he was not chosen to be the rectangle during a shape song. He started to cry and shout "I wanted to be a rectangle", he then tried to snatch it off the other child... I keep thinking what was so attractive about the rectangle???!!!! Does anyone else recall incidents like this, or perhaps have also kept similar records which have helped them realise how much their child/ themselves have changed over the years??....