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westie

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Everything posted by westie

  1. I thought my little one was the only one who does that! He is almost 5 and he HAS to be naked and squats on toilet just like you say. He is not constipated or fearful if we let him do this so I let him get on with it (does mean he will not go outside house/ relatives house though) - is a bit of a worry about what he will do when he is bigger! my older son has lots of issues around BM's, prescribed movicol, wont take it and waits days then it hurts him. He is paranoid about having a dirty bum (when he was younger his pants were soiled a lot because it used to leak out involuntary and this has affected his thoughts and behaviours. He blocks the toilet sometimes even though there is NOTHING there. It is really sad. I have no idea how to solve it. its been like that since he came out of nappies.
  2. Thanks for your reply! I think we already have the Luke Jackson book but will check the others out. Regards, D
  3. this site has example layout for letter to request statement. Its a site that is for parents of ADHD kids but I think it is a decent example. There is also link to info sheet about statementing at bottom of page http://www.adders.org/info157.htm Regards D
  4. and what about encouraging the school to provide some sort of holiday activities that you can help with? or volunteering to help with another summer scheme with children to fill some of your time during the holidays? my sons school had a few events over the summer, for parents and children to get involved with, making clothes, doing sports on the field etc. it seemed to go down well. Obviously not something you could do alone but it may be of interest to some other teachers or governors or other staff in school. Our school has a parent involvement worker now and she was heavily involved in organising it etc. Would need to be well planned obviously (for you as dont want to be more pressured!), and make some time for you and your boyfriend to enjoy too! Another thing could be maybe trying some other type of work in the holidays (voluntary) which may help you to find another job/ career you like without giving up this one straight away.
  5. If you get a diagnosis I would think that you could approach your bosses and try to discuss ways that you could better manage the issues that affect you because of your disability (for example I am thinking if possible would another adult colleague who you trust be able to be present when you speak to parents etc so that you feel more comfortable?). or there could be another way to help you, that you could discuss together. If you are a talented teacher and good with the children and you enjoy this part of it then it would be sad to move to a job you would be even less comfortable with... If you are part of a union or if you have a counselling service this could be something to discuss with them? Disability discrimination act thing I would imagine, would think they would have to try to help if you had a formal diagnosis
  6. Hi, I am a branch officer at the Rotherham National Autistic Society Branch. We have a fairly well stocked library of books relating to ASD/ AS and issues relating to these conditions. Most of them are about/ for children with ASD and we hope to expand our collection of books relating to or for adults with ASD/ AS. Does anyone have any recommendations on books they have found useful. I would be grateful for any suggestions and will pass them on! Also if anyone is aware of any services in the Rotherham/ South Yorkshire area that are for adults with Asperger Syndrome/ Autistic Spectrum Disorder then I would appreciate it if you could also message me about them - we are trying to build up a picture of what is provided in the area as we are due to start a campaign for better adult services in our area. (social groups, daycare, other support) Thanks in advance, D
  7. yes its amazing that they keep it so quiet about you being able to ask yourself! I got a book on SEN from the national autistic society it explains the stages of support, statementing, annual reviews etc and gives some good example letters to ask to see childs records, request statement etc and gives some guidance (general - every child unique of course) about what a statement for an autistic child may need to include. its about £4 I think... blue and white cover. Of course there is some stuff online,if I find it I will post a link. Let us know how you get on!
  8. wow 15mths that is a long time! Was that because school did not agree one was needed or just lots of assessments? For my son asked for assessment in Nov and it was finalised by July, in time for him to start full time reception class (he was in playgroup when ball was started rolling) and at time he did not have diagnosis of anything other than emotional behavioural difficulties.
  9. All you have to write initially is a letter (you can send other stuff along if you like but they will write back to you and the school etc anyway to ask more) to say that you want them to carry out an assessment for a statement of SEN for XXXXX whose date of birth is XXXX and put down why you think they need a statement (obviously you have a lot of evidence which is good, get it all copied cause you may need it again and again for various reasons! And they might lose it .. When I initially asked for my son I wrote a brief letter (1 page) and sent some reports then later on sent a lot more stuff. They still got me to fill out a questionnaire, I referenced my original letter and added some more stuff. At the time I waited ages for the paed. to refer till another professional told me I could ask myself so dont blame you for starting ball rolling. You can mention to ed/ psych and school that you have written to ask. There are sometimes template letters on the internet for you to use as a guide - I didnt use a guide just made sure I included his name, dob and address etc, that I was asking them to do an assessment and some reasons why, and also mentioned I had included some extra info, and my contact details. That is all they need to start with I think.... Good luck X addition: Yes think there is no harm in starting earlier. Do you suspect they (school/ autism outreach) are thinking statementing is necessary anyway or do they have plans to help without statement? Is yr child already on school action plus? And its not worked? Usually a statement in itself means no more money for school to help your child but it does give the school a legal obligation to meet the childs needs, or answer as to why. Also necessary if you want them to go to a specialist school.... The diary entries may be really useful - I know one parent where school said child was okay and they were able to handle them when home/ school diary showed a different story (after a battle the child did get statemented, no thanks to school - they moved to another school before statement finalised and doing much better now! )
  10. http://www.dsm5.org/ProposedRevisions/Page...ion.aspx?rid=94 Thought that this may be of interest to some on here, there are 4 tabs which explain in more detail the proposed changes and the new diagnostic checklist for autism.
  11. http://www.renlearn.co.uk/alphasmart_prod.html This was mentioned at one time for my son to use as a recording tool as alternative to writing - not sure if you can get voice recognition software with it?? Not sure if it actually was used by him.
  12. Think I may have been a bit hasty posting this, have figured it out hopefully!!! clicked on button saying "options" then "display modes", then "standard" and that seems to have done the trick
  13. Now when I look at posts I see the opening comment, then a big string of one line thread things at the bottom that I have to click on to view the next post.................. and then go back.................. and then click on the next one to read........................ and then go back.......................... and then click on the next one to read.................................... IT TAKES FOREVER!!!! What has happened and can I change it back to how it used to be (PLEASE!!!!) I am not aware that I have clicked on anything to make the change myself but never say never. I hope that someone can help Thanks for reading
  14. Hi this link was posted on the PDA forum I also use. It is a leaflet with information for dentists treating people with ASD. It is (I think) from the US to references to their medical care system perhaps not relevant to most of us, but many of the points/ information given looks useful to me, what do others think??? I hope it will be of use to someone! http://www.dmd4kids.com/PDF_Forms/SpecialNeeds/Autism.pdf
  15. Please find below details of a National Autistic Society (NAS) HELP 2 seminar for parents of children with a diagnosis of ASD in the Rotherham area (Note that our local NAS branch have been advised that as PDA is considered part of the autistic spectrum then parents of children - and children themselvelves - who have been diagnosed with PDA should be able to access services and training offered by NAS. Note that there may be other considerations in making a decision such as "do staff have training/ awareness of PDA" etc before you get too excited! - but would say it is worth asking the question if you do have NAS groups or training in your area that you would like to attend. Also note this comment relates to NAS groups/ training only, other organisations or groups may have a different opinion/ viewpoint!) Tuesday 1st December 2009 – (10.30am – 2.30pm) An Introduction to writing Social Stories Venue: The Robert Ogden School Clayton Lane Thurnscoe Rotherham S63 0BG An Introduction to writing Social Stories™A practical seminar looking at the theory behind Social Stories, 20 tips for writing Social Stories and an opportunity to write Social Stories for different occasions. This seminar is aimed at parents/carers of children aged 3 – 16 years of age with a diagnosis of Asperger Syndrome or Autism Spectrum Disorder (ASD). Seminar delivered by: Wendy I’Anson – help! Family Programme Support Officer (North East) (Please note light refreshments only are available on these programmes; please feel free to bring your own lunch if required.) How do I apply for a place on the seminars? By completing and returning an application form you will then be informed whether you have been allocated a place on the seminar(s) of your choice. Places are allocated on a first come first served basis.Confirmation letters will be sent out approx two weeks prior to the seminar date. Please return your completed application form to: The help! Team The National Autistic Society North East Office Room 10 North Sands Business Centre Liberty Way Sunderland SR6 0QA For any queries relating to help! 2 seminars please contact Jan Fuller on 0191 5680732 -------------------------------------------------------------------------------------------------- If anyone from the Rotherham area is interested please personal message me and we can discuss a way for me to send you the application form!, Alternatively you could try phoning Jan Fuller and asking if they can send you one. There are places available
  16. Hi, I went to a conference today and found out about this group in sheffield, ACCT - Asperger Children and Carers Together They have a weekly drop in at the Sheffield Carers Centre, and a monthly parents meeting at same venue (term time only) and they also have monthly meetings for children with AS and their siblings as well. I have posted a link to their website which offers more information. I am sure it will be of use to parents in the Sheffield area. http://www.acctsheffield.btik.com/p_Home.ikml
  17. Thanks everyone for your reponses. I do give him multivitamin and omega 3, and he has been presribed iron by the paediatrician as he was slightly anaemic and now he has to take a maintenance dose until/ if he does start eating a more varied diet. He is in healthy weight range and is growing, and his blood tests show no other deficiencies so we are pretty lucky really. It was the paed who suggested hard crackers/ breadsticks as a replacement for bread and he does generally eat them! He does also eat some things in one environment that he will not in another - for example when he used to go to a childminder he would eat sheperds pie at hers and he would not eat it anywhere else - that's just one example. And as you said he ate the garlic bread in the cafe, but will not try it, or toast - a similar texture - anywhere else! He hates dropping food on himself (sauces from spaghetti/ bolognese) and removes his clothes/ gets very distressed by this and at one point would want me to feed him, but we have worked on this with a reward chart for feeding himself and he is a bit better now and will feed himself spaghetti. He doesnt really eat food which requires using a fork and knife which means he is not skilled. The occupational therapist came up with the suggestion to let him practise by cutting up play-do as it is important to develop these skills.
  18. My little one (ASD) has quite a restricted diet (lives mainly on pasta, tinned spaghetti, and dry cereal!) and bread in any shape or form (i.e. toast etc) is definetely off the menu. This has always been the case however a months ago in the supermarket cafe he had spaghetti bolognese kids meal, which always comes with one slice of garlic bread (spag bol is his usual choice and the only thing he will eat there) He started saying he wanted to eat the green bits on the bread (tiny chopped herbs or something that are lightly sprinkled on top) and he started trying to pick them off. Then a couple of weeks later we went with his aunty and again he chose same meal. This time he came out with "I am going to eat some break" and he actually took a small bite !!! After this we tried him with toast but he would not, and still will not, not touch it. But again a couple of times when we went to same cafe he did try a bit of the garlic bread - not a lot but we were still pleased. And yesterday we went for tea and he ate THE WHOLE PIECE OF GARLIC BREAD!!!! How cool is that! Small breakthroughs, but significant for him. He still faddy but it does give us hope that if we give him the option of eating things he would not normally try without pressuring him if he does not then we may be able to introduce new (and healthier) things to his diet. Making a packed lunch for him is difficult but we are trying: Fruit juice carton - apple/ orange, processed meat (ham - he eats this sometimes) and breadsticks rather than a sandwich, raisins (he has not eaten these yet, but I live in hope!) school bars and/ or yoghurt covered fruit flakes/ or rich tea biscuit and a yoghurt...... I havent put crisps in his lunchbox since first day as he will eat them and leave the breasticks etc. What do you other parents with "fussy eaters" put in lunchboxes???
  19. http://www.stepsprograms.com/stepsforschools/think.php suggests Specialised Therapeutic Education for Physical and Social Skills the website relates to equine therapy, so not sure it will be what you are looking for, but posting anyway as it may give you some ideas of other things that it could be.
  20. I know of people with SEN kids who have attended this course and benefitted. I would attend if it were offered and I was able . Even techniques/ courses that are specific to ASD will not work for everyone, so I would say its worth a try. I had to attend a long time ago a "bonding course" and I did, it showed them that this was not the issue they thought it was and they then backed me up to get my eldest assessed further. I was offered a similar course a long time ago, did not ask my employer for time off (1/2 day each wk for 12wks) and they wrote back to paed to say they could not help me further as I refused course, it took ages to get referral back and when they offered me this "bonding course" whcih was similar time commitment I asked my employer as I felt if I did not attend then I was unlikely to get any more help from them, luckily my employer was very understanding. Would say if only your hubby attends and you can't, then take a great interest in and find out from him about the techniques etc they are discussing because I would say most effectiveness will come from both of you doing same things. Unfortunately sometimes both parents are not able to attend because of work commitments or having younger children not at school and no childcare. There is a book written by caroline webster stratton which may be helpful to read if you cant attend the course along with your hubby.
  21. Hi, I posted on here last year as I was in a similar situation. I had worked full time since leaving school (15yrs) for same company. For a time my hubby did not work due to issues with sorting out eldest child after school and in hols (he didnt like being a househusband) and when he went back I had to negotiate with my employer for part time hours (I was already working flexi hours, starting and finishing early and they were pretty good with time off for appointment etc). So I worked 20hrs over 3 days and the childminder who already looked after youngest had a change in circumstance and offered to just look after my two children (at that time youngest not diagnosed/ being assessed) I had to change jobs so that I could work these hours, but was managing okay. BUT at the time my eldest having real bad time at school that year, and my youngest was having issues which led us to consult our health visitor who referred for assessment. And a month after youngest diagnosed with ASD, my childminder gave notice she had another job as she couldn't manage on wage she was earning looking after my two (as far as I think it was not because of my kids, at least I hope so!) so I had to leave my job at very short notice cause I was not going through hassle of finding someone else (I could get a minder to have one but no one to have both together and my eldest in particular is really affected by having someone else looking after him and having to comply to their routines etc - even though he knew and liked this minder he still didnt like going esp. in the hols where he was there for a longer time). Plus I felt bad as what with eldests school phoning, hospital apptments and having to take more time off to cover minders hols etc as my mind was elsewhere sometimes, and I thought it would be easier (and better for my kids) to just leave and be a full time mum/ carer. My hubby was working in a job where I thought we could live off his wage and although work offered me a month off with full pay to look around I decided to not take that up as knew what I was going to do. Anyway a year on and I am glad as I dont have to worry about negotiating for time off, neglecting my job or my kids and they both seem to be a lot more settled now than they have ever been. Financially we have been ok so far, and since my little one started part time school I have done things like family learning numeracy course on offer at school, then a level 2 numeracy course, then at present I go into school two afternoons to work in classes and doing an 11 wk helping in school course. I have done the nas earlybird course (which I would not have been able to do if I had been at work) and I also go to the NAS branch meetings and my mum is elderly and with health problems so it means I can see her a lot more and help her more as well. I also meet up with other parents and try to help others as much as I can with writing letters for school etc. and finding out information for people. Its also allowed me to read and research and I have done some work with behaviour with my eldest which I think has helped him in some ways to better deal with it. When my youngest son does go to school full time I will do some volunteer work with home start or NAS and perhaps still help in school as that can be fun (and its easier to get time off if you are volunteering although of course I would not take advantage and turn up whenever and wherever I feel like it). At this stage I am not sure about getting another job for a while, as got the milestone move to secondary for eldest, and full time school for youngest are coming up and this may mean more appointments, writing letters to get them support if they are not coping etc. Of course they may be a time when circumstances change and I have to but I will meet that hurdle when I come to it, and I hope by trying to keep my skills up to date it will make it easier when I do (and I want a career working with families, completely unrelated to my old job) I think you have made right move in asking first for reduced hours (and glad your employer have decided to give it a go) and I hope it works out for you. Its a very personal decision. Its hard to give up, I dont see a lot of the good friends I had and I miss some aspects of my job but more the interaction with people and I am doing my best to keep my mind active and occupied (I have yet to succumb to daytime tv would you believe!) and get skills and experience to help me to get a job at some point in the future (fingers crossed). In other ways its great being at home and spending time with your family as well.... (Not mastered the housework side yet, so its still often rather messy )
  22. Oh and I hate taking my PDA son shoe shopping as well, they are always too tight and often I spend a fortune to get them home and find he wont wear them (he would prefer barefoot everywhere I think he takes shoes and socks off even in class) I have got him some croc type shoes and because they are really roomy he seems to like them better than the others. He once put a pair on and then straight away said his feet were "burning becuase they are so hot" I said I couldnt see how that could be the case unless someone had placed hot coals in them" but looking back that is not really a nice reaction from me because maybe that is how they felt/ feel to him and if that is case then why would he want to wear them.....
  23. Have you researched Pathological Demand Avoidance Syndrome (PDA)? PDA children generally have better eye contact (unless they are using it to avoid demands) and also show better social skills that ASD children.... nothing that you have posted has brought up a "red flag" to make me think PDA as such, other than but you say she shows SOME signs of ASD but doesnt fit the profile, has good eye contact and appears more social. It may be that she does have autistic traits without fitting the full criteria for a diagnosis. I hope your visit next week makes things clearer and if necessary she gets assessed - better to be sure than to miss something and for it to be picked up later. My friends son is now 10 and showed signs since early age but always dismissed by professionals until this age when you can't ignore and its affecting him at school as well now. Below are some examples of things my son does, and things to think about that PDA children can display.... Is her "imaginative play" truly imaginative (i.e. she makes it up from her head rather than copying something she has seen on tv, or someone has shown her to do) for example if you spend hours with her encouraging her to feed the doll she may actually do this and she may say things to the doll, but it may always be the same words, or the same sequence of events, with no variation in her play - or it may be recognisable as a scene from a show...... If someone else is playing an imaginative game can she take part and follow what other person is doing and add in their own imaginative ideas?? My PDA son was (and still can be) overcontrolling in his play with peers, telling everyone what to do and say and having a mad hissy fit if the other person drove the car the "wrong way" etc (when younger he threw a car at his older cousins head because he drove the car the wrong way) He will go up to strange children in parks or play areas and talk to them and play with them even appearing overfamiliar at times, but if someone comes to our home unexpectedly he will hide on the stairs and not come in. When a lady from CAMHS came the other week he refused to come down for ages, when he did come in the room he would not look at her or make eye contact and had to be "forced" to reply to her questions...... He can be charming and lovely one minute, but then totally flip and overreact the next. He often develops obsessions with people, he has two close friends and he doesnt really like them playing with anyone else, equally some people he DOES NOT like and if he doesn't like someone, this can be a trigger for outbursts and poor behaviour. If you ask my son to do things in an indirect way he will often comply, but say in a direct autocratic way and he will do whatever it takes to NOT do it! PDA children often act like mini adults, quite controlling and bossy, love playing the teacher (and this can be channelled in a positive way). Also, my son often works out in his head what is going to happen in a particular scenario and then will react as if whats in his head has really happened, when it may be total opposite. For example one day he asked to go to neighbours house and before I could answer he started having a tantrum shouting "you never let me do anything etc etc etc" - I had not said A WORD!!, But in his mind I had said no...... he often does this sort of thing at home and school. Does she avoid doing things that you ask of her? Not necessarily by having a mad fit but by withdrawing, refusing to speak or look at someone, by talking at or over them to drown out demands, or by disracting with questions? Are her routines and fixations only at home (if she goes anywhere else regularly does she also show similar behaviour? And one last point is that PDA is more commonly diagnosed in girls (1:1 ratio girls to boys, rather than the 1:4 ratio for AS).
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