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westie

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  1. westie

    PDA

    Ha, got a bit carried away (though leaving my earlier post as that is what I think) Can you explain a little more about what you mean cause on reflection I may have impulsively responded as a parent who feels judged as being 'no good at the job' rather than looking at your comment with a more detached point of view so perhaps I have taken your comment in the wrong way.... btw If any adults do wish to be assessed for PDA then I understand that the Lorna Wing centre do assess adults for this condition. The contact details for them are: The NAS Lorna Wing Centre for Autism Elliot House 113 Masons Hill Bromley Kent BR2 9HT Tel: +44 (0)20 8466 0098 Fax: +44 (0)20 8466 0118 Email: elliot.house@nas.org.uk
  2. westie

    PDA

    My son has a diagnosis of PDA and no his behaviours are not as a result of bad parenting (and I am by no means saying we are perfect parents). He has many autistic traits. His behaviour is not (now) as extreme as the child on the program but he still has 'moments'. We (us as parents and the school) have worked very hard to change behaviours and after 7 or more years we are seeing a change - this of course may be transient and when he moves to secondary school I fear a return of many of the negative behaviour patterns he has shown since a very early age. I do agree that he had fallen into a pattern of negative behaviour/ response to demands or axniety raising situations that I think he learned at an early age becuase he did have some communication and the throwing/ tantruming/ aggression became his first response to any situation he could not deal with. It took a long time to change this and a lot of effort. I have attended NAS earlybird courses, webster stratton courses, bonding courses and used books and other info (cause support from other services was a long time coming). Look beyond the behaviour as you have to do with a child with autism and see what is causing it, the cause is extreme anxiety and stress because the child has a neurological condition which causes them to feel unable to cope with even the simplest demand. It is also accompanied by the sensory and other issues experienced by many with autism. another point about PDA is that not all children show the extreme behaviour/ tantrums as the girl on the program (or my son when younger) Many children diagnosed with AS show these behaviours (perhaps not to this extent admittedly) so is this also the case for them? I as a parent of a child with this condition think that the PDA diagnosis helps a lot, as you understand that it is important to "pick your battles" and there are ways to place demands on a PDA child without making them so anxious, and you also appreciate that you have to be flexible and adaptable and understand that traditional "parenting" or behaviour management programs may not be as effective, as is the case with approaches used for children with AS. It also helps teachers and other staff supporting the child to better understand how to deal with and manage the child. Have you visited or researched the Elizabeth Newson Centre and/ or spoken to the staff there? They are not some crackpot backstreet organisation making up labels - they specialise in many communication disorders and have published papers and literature about ASD, PDA and other speech and language disorders in many respected published journals. The national co-ordinator for the PDA forum has actually spoken to Lorna Wing regarding PDA and the conversation (in which Ms Wing recognised and acknowleded the condition) led to the writing of the information on the National Autistic Website and as a result the increasing interest in the topic. Remember AS was a little recognised condition a few years ago and many of the skeptics said that was not a "real condition"......
  3. Hi, not sure if the group originally mentioned in this thread is up and running BUT there is a facebook group for parents of children with autism/AS where issues like this are discussed, see link http://www.facebook.com/#!/group.php?g...6623&ref=mf
  4. found this about having a blood test. http://www.autismcommunityconnection.com/f...od_Test_pdf.pdf Also found this on another site about having a blood test (know you not specifically talking about blood test but its the closest thing I could find....when you type autism and vaccinations it just fetches up a whole load of stories about vaccine damage, mmr etc) http://www.portsmouth-autism-support.co.uk...o.php?p=5#linkm My son won't have a blood test and the hospital have said they may restrain him. What can I do? Thanks for the question. First of all I am sure hospital staff will advise you that restraint is an absolute last resort. They will also only use trained staff if this last resort becomes necessary. Depending on your child's abilities you could try, or consider, the following. Use a social story that incorporates pictures in the weeks leading up to the blood test. Try to arrange for him to see someone else having an injection. You could use a video clip to support the social story. Have him act out an injection with dolls or with relatives. Teach your child some simple relaxation exercises. Let him do something he thoroughly enjoys before, during and after the injection. Can a Community Nurse do the blood test at home? Does your son understand that he can spare the blood and what will happen to it once it's taken?
  5. My son is 11 now, and up until this year would do everything he could to avoid writing. He has made steps forwards this year and while it is still fairly illegible (and he puts capital letters in all sorts of odd places, and even reverses letters occasionally) it is much better than it used to be, and even more importantly he will often opt to write even when offered use of a laptop! It does seem to make him tired out. His school are pretty understanding about it, they let him use IT (this is in his statement) and they also have a scribe who helps him in SATS etc. They are going to do the same for his Y6 SATS too I understand. I am pleased about this as it takes some of the pressure off - it is hard to write neatly and quickly. I am left handed. My handwriting is terrible to be honest - if I try to make it neater then it take me ages to write anything. While it is not illegible always it can be hard to read (note: I can write as 'neatly' with my right hand - but that takes me much longer to do!). Has your son tried a 'stabilo s'move easy pen'? They are a peculiar shape, like a banana and can be bought for left handed and right handed people. The OT recommended my son use one. I bought a left handed one myself and it seems to make a difference in terms of the ease of writing - it feels nice to hold, it makes your hand posture stiffer, easier to write longer paragraphs and it was neater too. May be worth trying if you havent already. You can buy them from some supermarkets now, as well as stationary shops. You can buy refills for them as well
  6. My son is 11 now, and up until this year would do everything he could to avoid writing. He has made steps forwards this year and while it is still fairly illegible (and he puts capital letters in all sorts of odd places, and even reverses letters occasionally) it is much better than it used to be, and even more importantly he will often opt to write even when offered use of a laptop! It does seem to make him tired out. His school are pretty understanding about it, they let him use IT (this is in his statement) and they also have a scribe who helps him in SATS etc. They are going to do the same for his Y6 SATS too I understand. I am pleased about this as it takes some of the pressure off - it is hard to write neatly and quickly. I am left handed. My handwriting is terrible to be honest - if I try to make it neater then it take me ages to write anything. While it is not illegible always it can be hard to read (note: I can write as 'neatly' with my right hand - but that takes me much longer to do!). Has your son tried a 'stabilo s'move easy pen'? They are a peculiar shape, like a banana and can be bought for left handed and right handed people. The OT recommended my son use one. I bought a left handed one myself and it seems to make a difference in terms of the ease of writing - it feels nice to hold, it makes your hand posture stiffer, easier to write longer paragraphs and it was neater too. May be worth trying if you havent already. You can buy them from some supermarkets now, as well as stationary shops. You can buy refills for them as well
  7. My son is 11 now, and up until this year would do everything he could to avoid writing. He has made steps forwards this year and while it is still fairly illegible (and he puts capital letters in all sorts of odd places, and even reverses letters occasionally) it is much better than it used to be, and even more importantly he will often opt to write even when offered use of a laptop! It does seem to make him tired out. His school are pretty understanding about it, they let him use IT (this is in his statement) and they also have a scribe who helps him in SATS etc. They are going to do the same for his Y6 SATS too I understand. I am pleased about this as it takes some of the pressure off - it is hard to write neatly and quickly. I am left handed. My handwriting is terrible to be honest - if I try to make it neater then it take me ages to write anything. While it is not illegible always it can be hard to read (note: I can write as 'neatly' with my right hand - but that takes me much longer to do!). Has your son tried a 'stabilo s'move easy pen'? They are a peculiar shape, like a banana and can be bought for left handed and right handed people. The OT recommended my son use one. I bought a left handed one myself and it seems to make a difference in terms of the ease of writing - it feels nice to hold, it makes your hand posture stiffer, easier to write longer paragraphs and it was neater too. May be worth trying if you havent already. You can buy them from some supermarkets now, as well as stationary shops. You can buy refills for them as well
  8. Some information from the website about the conference: "How can we make the workplace more accessible for people diagnosed with ASD? And how can we assure a better transition from education to employment? This conference will aim to answer these questions with its mix of expert speakers. Our diverse agenda will look at the issues with employment and how best to overcome its barriers for people diagnosed with ASD. Furthermore we hope to offer a unique opportunity to discuss and ask questions, within discussion sessions or direct questions to our professional speakers. Together this agenda will aim to address the problems within this area and provide solutions, overall delivering an opportunity of support for those concerned. If you work with anybody diagnosed with ASD, this is undoubtedly an event not to be missed" http://www.conferenceconnect.co.uk/ please see link for more details
  9. These are about making a decision as to whether a person is/ is not a friend. http://www.speakingofspeech.com/uploads/Is...endPositive.pdf http://www.speakingofspeech.com/uploads/Is...endNegative.pdf this one is about playing with friends http://www.adders.org/socialstories6.htm this one is about consequences (for unwanted behaviours) http://www.speakingofspeech.com/uploads/If_Then_Grounded.pdf This is a link to the main page on social stories on the ADDERS website: http://www.adders.org/socialstories.htm Link to page (with index) on ''speaking of speech' site http://www.speakingofspeech.com/Social_Ski...Pragmatics.html I found links to social stories on a wide variety of topics via this site - http://www.freewebs.com/kidscandream/page12.htm http://www.freewebs.com/kidscandream/page13.htm some of the links are out of date, so dont work but worth having a look around and trying them. There are lots of different styles on here: some with words, some with those funny little pictures with words underneath (cant remember what the proper name for them is!) there are even links to stories about visiting the doctors, even having an eeg (this one uses photos and explains the process in detail!) http://www.autismcommunityconnection.com/f...EG_Test_pdf.pdf
  10. my eldest was first assessed at 3yrs, diagnosed 5yrs my youngest was diagnosed with ASD at 2yrs 11mths so would say ask for assessment, and if poss. act before 5yrs, in our area hospital have multidisciplinary team at hospital who assess for all sorts (involves speech and language, physio, OT etc) whereas here after 5 they go to CAMHS who only deal with diagnosis ASD/ ADHD and its separate referrals then for S&L/ OT etc - which may take up more time!
  11. I know, there is so much on there I have been down list and downloaded a couple of things but there is such a lot I think it will take some time to look through it all! The ASD mind map or the PDA mind map are pretty useful for schools I have seen these before. Think they are pretty much at the top of the list so not too difficult to find.
  12. Check out this website, it has LOADS of downloadable resources on it relating to ASD - even social stories, picture symbols and all sorts! http://www.askbruno.org/resources/resources.php Below is a bit of background and information about the whole site (the link is just to the resources section but you can go to the home page and have a look around! -------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------------- AskBruno has been produced by members of Warwickshire's support service for pupils with a diagnosis of Autism Spectrum Disorder (ASD). This site is a further development from the 'ASD Toolkit for Teachers' a Cd Rom that was given to all Warwickshire schools. The aim of this 'Toolkit' was to give mainstream teachers a basic understanding of ASD along with some pointers to appropriate strategies and good practice. It also contains hundreds of examples of resources that the Autism Team developed and used successfully. The Autism Team are now part of The Integrated Disability Service (IDS - see the 'About Us' chapter). Many of the resources on this site have been transferred directly from the 'ASD Toolkit for Teachers' whilst we were part of the Disability Integration Sensory Communication Service (DISCS). Although there are many new and updated resources some will still contain the DISCS logo and website instead of the IDS logo. We hope you find the information, resources, and opportunity to share and ask questions helpful. Feel free to download them but please take the time to give us some feedback through the ASK Bruno question section (tick the 'Feedback' category when you post your comments). In the understanding section you will find general information about the autism spectrum, some of its sub groups, and related disorders.There are resources and links to further information. If you cannot find what you are looking for then Ask Bruno in the questions section and he will do his best (with a little help from his friends!). Questions can be browsed by category or key words. In the resources section you can browse through all the resources on the site. You may filter them using one of the key categories on the left, e.g. 'communication' or by type of resource (Word, video etc) by the drop down menu on the top right hand side. If you are looking for guidance about what training you may need or is available have a look in the training section. Information about tips, strategies and good practice can be found in the good practice section
  13. Ah just read some of your other posts and thing that the change in routine could be a possible reason for this change in behaviour... Also have you asked for an assessment for a statement of special educational needs, that way you can get a full assessment of his needs, and hopefully find a school that is able to better cope/ more understanding/ meets his needs? As part of this process he will be assessed by EP and maybe even other professionals such as speech and language. Its a long process and may run alongside his other assessment but if a statement can be in place before he has to be in school then he will hopefully fare much better. The preschool years were a nightmare for us - 4 nurseries/ groups all before reception, one he was "expelled" from - for biting, the second I took him out before he was "expelled" again, one was part of an assessment and the other was a group more experienced with special needs so although there were issues they were better able to deal with them, and a bit more understanding in general. He only went a couple of mornings though
  14. Another lady whose daughter is similar age and diagnosed AS said her daughter was very aggressive for a period (very much more so than usual) and eventually she pinned it down to supermarket brand bread that she had started buying, as it had some ingredient which was known for triggering things like that. She stopped her sandwiches/ bread consumption and things settled down to a more managable level -it may have been sodium benzoate.... Is it bedtime that is causing the explosions or something else? Has it always been an issue or recently? This same lady as above mentioned that moving all toys and stimulating stuff out of the room where she slept really helped her to sleep - just really bed and wardrobe, plain decoration in there. They were fortunate to have a spare room to use as a playroom and not everyone has that option but there may be something that may help if this is the case. Someone else had a routine of having a 'mum and Josh' time card with both pictures on it, and they would give it to the child and then they woudl do an activity together for a time. Then mum would give him a Josh time card with just his picture on. That way he learned over time that when he got the Josh time card he had to stay in bed on his own. His mum also gave him a small boxz with things he liked, and with his picture on the top for him to look at when it was Josh time. Eventually he learned to be more settled. Problems not gone but reduced. Sorry if I am completely off track! I also know many parents who use melatonin with varying results, many more positive comments though . If you really need to sort the problem would be makign another appoinment with doctor to ask about it, even if you don't take your son along. Not sure all GP's will prescribe mind you....
  15. his current statement acknowledges his sensory issues such as noise, crowds and being touched - especially when agitated. He once (i think Y3 or Y4) punched a TA who tried to stop him going out at playtime (he had been angry in the lesson before and the TA feared him exploding in the playground) it was not restraining or anything but I think just a brief touch but he hit out :-( He doesnt really like being touched or hugged much -can cope if warned and he decides its okay, but it will not be for long if he does allow a brief cuddle! If he is angry or agitated and you put your hands on him even lightly you are "breaking his arm" - he was a runner when he was little and often wound up coming out of school so I always had parents staring at me while he kicked off and accused me of breaking his arm when I tried to hold his hand and prevent him running off.
  16. Have you explained to the school how you manage your son at home? Or is it simply that for him the whole school environment is just too much (I think I read that he has sensory issues?) With my eldest son, diagnosis was a long and frustrating process. Like your son he has signs of ASD but after a long and lengthy number of assessment, parenting programs etc. a diagnosis of Pathological Demand Avoidance Syndrome (PDA) was suggested by some people at the child development centre. At that point we were waiting to see CAMHS and it ended up with the Psychologist at CAMHS saying, 'yes PDA is likely' let speech and language deal with you as we know nothing about PDA..... So referred to another mental health team who also knew nothing but agreed to help us and they got us a referral to a centre in nottingham who were experts on this condition as well as autism and other communication disorders. They confirmed it was PDA and gave us some excellent advice. The school has been supportive and willing to listen to us as we are to them. Despite him having bad behaviour emotional social difficulties (he is statemented, has been since starting full time school - and before any diagnosis other than EBD had been given! - so no diagnosis does not rule out him being asessed for a statement if this is what you think he needs) he has only been excluded once for one day, and we have started to see some positive changes behaviour wise. How the staff (and we) deal with him makes all the difference with my son. His current teacher who he has had since Y5 is briliiant and they have a good relationship and understanding. Other teacher start out using traditional "behaviour management" and he has had massive meltdowns. Usually things start to improve once they get to know each other and I feel that the teachers may have learned how better to manage him... He still has issues mind you, and if secondary school not taking on board his diagnosis then all the progress we have made may be lost..... Def. worth investigating referral to somewhere else - many children with AS/ PDA/ ASD can cope when talking to an adult (in a calm quiet environment with no distractions and little or no pressure) and may come across as very able, but you put other factors into the equation and they will see a different child. Would the professionals at CAMHS come and observe him at school and then they may get a better idea of his 'areas of need', so to speak?
  17. thanks Trekster, will check out these as well! Regards Debbie
  18. good luck if you apply for the grant, hope you get it. Have a look round the site, Cerebra offer so many other things as well as the grants!
  19. good luck if you apply for the grant, hope you get it. Have a look round the site, Cerebra offer so many other things as well as the grants!
  20. Sorry for multiple reply of same post, I was trying to edit it - what I meant to say was maybe if you have some friends you could practise by thinking of some of the sorts of questions they may ask or tasks they may ask you to look at, and then get a couple of people (relatives, friends whoever will be suitable!) to practise with you. Have at least two you trust to give you some feedback and the more you practise the (I hope) more comfortable you will feel when the big day comes... I hate these sort of things, but always find the build up to it is always much worse than actually doing it. I am not diagnosed ASD (and dont think I am, I do have children with these conditions) so will not even say I can fully understand your situation but I am always nervous about stuff like this and have to almost act as someone else in order to cope with it - I have actually been on the other side as well, assessing people (graduates) who applied to the company I used to work for, that is also stressful!
  21. well done, you will be great! Believe in yourself, please!
  22. well done, you will be great! Believe in yourself, please!
  23. well done, you will be great! Believe in yourself, please!
  24. check out this site, havent read through full criteria but def. worth a look for you and maybe others who could be eligible (ASD does come under this charities remit, as does ADHD) http://www.cerebra.org.uk/grants They offer so many other things as well that are of great benefit to parents. Advice, speech therapy vouchers, will services, advice and info on ASD amongst other things. They have a childrens corner for children with neurological conditions, and their siblings as well to join and play games, they even send them a magazine with puzzles etcm and even a birthday gift thats relevant to their interests! I am also doing their e learning course which is also great!
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