westie

Hi, this leaflet is quite useful in terms of actually writing a letter to the school requesting records and it gives a few pointers of things to consider: http://www.asperger.org.uk/Downloads/info-sheets/Child's_School_Record.pdf direct.gov.uk had following info about requesting school records: Getting access to pupil records All state schools must keep educational records on their pupils. These should include: •copies of the reports you will have been sent on their achievements, as well as other records about those achievements •exchanges of correspondence you have had with the school •any information the school has on your child's education from the local authority There may be other records kept, like details of exclusions, behaviour and family background, but this is not compulsory. The educational record does not include the notes that a teacher makes for his or her own use only. also found the following info on another site (Essex council site - its a leaflet but have copied text) - note it says at end it is not talking specifically about a childs SEN records: Parental access to school records As a parent, can I see my child’s school record? As a parent you have the right to see or have a copy of curricular and educational records relating to your child that are kept at the school. If your child is 16 or 17 years of age then you and your child have a right of access. If the pupil of the school is aged 18 years or over then only the pupil has a right of access. Headteachers / Governors are required to make a pupil's record available to a parent or the pupil only on receipt of a written request. A response to such a request must be made within 15 school days. A charge may be made for the cost of copying. What information can I see? Any material in a pupil's educational record which originates from, or has been supplied by, a teacher at the school, an Education Welfare Officer, or an employee of the Local Education Authority. Such records include information about attendance, achievement, progress in school, punctuality and disclosure of National Curriculum attainment level (This list is not comprehensive). Teachers' hand-written notes and subjective assessments may not be accessible. The following material is not available for scrutiny: • records made before 1 September 1989 • information received from third parties, e.g. reports from social services, medical reports and probation service reports • information concerning another pupil • information which, in the opinion of the Headteacher or Governors, might cause serious physical, mental or emotional harm to the pupil or any other person • information relating to actual, alleged or suspected child abuse references, e.g. to a potential employer, UCAS or colleges’ ethnic data • school reports to juvenile courts Who else can see my child’s records? A governing body of a school whether a state or independent school. Most higher education institutions may only request the transfer of educational records of pupils who are transferred to them. What about information held on a computer? Only the child concerned has right of access to computer held information, or the right to authorise a request to be made by a parent on their behalf, provided they understand the nature of the request. If they do not, a parent is entitled to make a request on behalf of the child and receive a reply. Governors of the school will need to satisfy themselves whether or not the child understands the nature of the request Information about a child's special needs is not covered within this leaflet. Legally, you have the right to a copy of your child's school record within 15 school days of you writing to ask for it. If you have asked for a copy, the school may make a small charge for the cost of copying. However, some information can’t be shown or given to you or your child. This might be because the school thinks it might harm the child or another person in some way. If the school decides to do this, you can ask them to explain why.

Hi, the National Autistic Society is holding a conference in London relating to PDA. It will be on the 26th Jan. 2011. No detail as yet but you can register interest and I will let you know when more details are released. http://www.autism.org.uk/News-and-events/NAS-conferences/Our-forthcoming-conferences/Pathological-Demand-Avoidance-Conference.aspx

http://www.sign.ac.uk/pdf/pat98young.pdf found this while browsing the internet, has been created to help young people who have a diagnosis of ASD/AS to help them understand more about the diagnosis and how they may be helped as well as suggesting some useful books that they may find interesting to read.

Hi, thought that you may find some useful and helpful information on the young minds website:- http://www.youngminds.org.uk/young-people (link to main page for young people) They have some information about feelings and depression on there, as well as other topics you may be interested in now or later on. http://www.youngminds.org.uk/young-people/how-are-you-feeling I agree that reading books like the one by Luke Jackson may help you to understand how others of a similar age to yourself are feeling as well. Take care of yourself, D

This guide may help you to fill in the form:- http://www.cerebra.org.uk/Resources/Cerebra/Parent%20Support/dla_guide_nov07.pdf I and others I know who have children with ASD/PDA/ADHD have found it very useful I know someone who has succeeded with claiming DLA for their child without a finalised diagnosis (they were turned down first then phoned to discuss the decision, asked for them to relook at the claim and then was awarded it. the child does get some help at school - not physical support etc and specific help with regards to making friends, accessing chill out space if upset etc) If you have any reports etc that detail some needs and support your claim then send in copies with your application - iep's etc can also be useful and save time especially if they are recent information they may not have to write to as many people. Always COPY your application form too before you send it so you can see what you have put in case you need to appeal Good luck X

Also found another potentially useful booklet about behaviour: http://publications.education.gov.uk/eOrderingDownload/ES81.pdf note link is to download booklet, you can also go to the website and order it (booklet ref is ES81) or phone and order this or any of the other ones in the list.

PDA parent/carersupport group for parents and carers of children/young people with Pathological Demand Avoidance Syndrome. Come and chat with other parents at the Carers Centre, 7 Bells Court,Bells Square, Sheffield, S1 2FY 0114 2788942 (On-street parking on Trippet Lane near Cubanaʼs costs about £2.20 for 2 hours but is limited) Friday 1st October 2010 morning 10-12 Friday 12th November 2010 morning 10-12 Friday 10th December 2010 morning 10-12 Friday 7th January 2010 morning 10-12

I know someone who has put the capsule contents in a yoghurt (not the same meds though so may want to check this. If he has a yoghurt after his tea then this may be one alternative to putting it in a drink...

"The red beast" and "a volcano in my tummy" are good books for working on anger management with young children. Hope that the KITES team give you some useful strategies too X

Hi, please find links to early support booklets about sleep, ASD's and also speech and language disorders on the Department for Education website (formerly DSCF) They can be downloaded as PDF documents, or if you register you can order copies which are delivered free to you. Sleep, ref ES82: http://publications.education.gov.uk/default.aspx?PageFunction=downloadoptions&PageMode=publications&ProductId=ES82& ASD, ref ES12: http://publications.education.gov.uk/default.aspx?PageFunction=downloadoptions&PageMode=publications&ProductId=ES12& Speech and Language disorders, ref ES14: http://publications.education.gov.uk/default.aspx?PageFunction=downloadoptions&PageMode=publications&ProductId=ES14& They also have booklets in the EARLY SUPPORT series about down syndrome, cerebral palsy, deafness and multi sensory difficulties. Some other useful publications you can download or order via this area of the website are the SEN code of practise, the SEN code of practise toolkit Also one I found useful is the following (for teachers, support staff but also useful for parents to read who have ASD children in foundation stage and may want to understand what their needs MAY be in this environment and how school staff can help children with ASD http://publications.education.gov.uk/default.aspx?PageFunction=downloadoptions&PageMode=publications&ProductId=DCSF-00040-2009& There is a publication about ASD and the inclusion development strategy program for primary and secondary pupils, but it is a DVD tool, the accompanying booklet which can be downloaded, does not give much detail but explains whats on the DVD/CD. You can access this programme online I think but you can't order the DVD/CD unless you are a teacher I think. Hope someone finds these useful!

Hey good luck with the tribunal,hope you get some answers and win your case X

That is terrible. I hope you take this further and that you get some good advice from your meeting today. If they are no help then you could ask your union again. Good luck and hope you find a more understanding employer next time

Is there any way you can ask them to postpone the meeting until you can have a union rep in with you? Check this out, there may be something which says you can reasonably ask to postpone if you want a union rep in with you (I am not sure if this is right or wrong - you could ask the union rep or if you have access to a free solicitor or advice line via your union membership then they could advise). Or alternatively do you have another work colleague who can attend the meeting with you, if the union person cannot? Then they can be a witness as to what they say to you and help to record facts etc about the meeting. And then if they give you the sack for this offence, if others have been let off for the same thing then you can take it further with the help of the union. If you are attending a disciplinary meeting then I am sure you are allowed someone else who works there in with you if there is no union rep available, or if you are not a member of a union. Don't let them push you out, its not fair and it sounds like they keep doing similar things to people other than yourself, and are thinking they will always get away with it.

Thanks for this link, its a really useful guide and I have passed it on to others already!

sorry to hear that. My son has attended mainstream with a statement and has managed so far but will start at secondary after the hols and I am not sure how he will cope there - its a very large school with very high expectations in terms of behaviour and academic performance. The learning support dept staff are brilliant but not sure how the individual teachers will be. Teacher relationship has played a large part in the success or otherwise of his primary years, but having multiple teachers every day will mean he is more likely to come across one who will not understand him or his needs, and this is the major worry. Planning to keep an eye on things and hopefully I can take action if I see anything developing. We have had good relationship and communication with other schools so hopefully this will continue so we can work together and sort things out. Hope you manage to sort the transport issue and that he can stay in the school that is meeting his needs. X

hope your appointment goes well. The summer youth group is run by the same team that do the youth club at Maltby and I was really impressed by them. I hope you can get her there and she enjoys it. btw are you aware of the NAS branch in Rotherham? see www.nasrotherham.org.uk for more info. Support group meetings will start again in early september and you are welcome to attend if you can make it! we also have a facebook page, search for "national autistic society rotherham branch" - not as detailed as the website but am trying to keep it up to date with upcoming events etc.

I agree it is lucky that there are activities and services in my area, how long they will be there is anyones guess - funding will be an issue in the future I suspect.

Hi, a parent of a child with PDA has posted a series of videos about PDA, including one which you can show to professionals and family members to help them understand more about PDA and how to support a child with this condition. The information is based on information and guidelines produced by professionals (with some tips that are perhaps based on things other parents have found useful as well). You can access the slideshow type video and the earlier ones (which are also useful to watch if you want to get a better understanding of PDA) via the link below. http://www.youtube.com/user/bluemillicent Westie

the new forum looks good, havent come across any specific issues yet, although I wanted to post a link to a specific topic in facebook but instead it posted a general link to the sites front page. Other than that it seems to be working okay.

Hi, my 11 yr old who has a diagnosis of PDA is currently attending a summer youth group for children with autistic spectrum disorders age 8 to 12 years. Its run by the Autism Communication Team (ACT) and the local youth service. He is really enjoying it, and the others who are attending also appear to be benefitting from it. I am really impressed so far. They have a quiet room which my son made use of a few times yesterday - the first day. The ACT team also offer a service for siblings - I think its day activities for younger sibs from 8 and think a residential for older teens, so they get to meet other siblings who are in a similar situation. My older son also went to a sports activity day (for any children 6 to 11yrs, not ASD specific)earlier in the holidays but it was not a success, so I won't be sending him to one like that again. Our local NAS branch also run a computer club for children 6 to 13 with ASD/AS/PDA and that has also been a success. Our branch (Rotherham) has also secured funding to continue this club and also to run fortnightly bowling activities for children with ASD/AS/PDA and also a couple of day trips as well. Other than the bowling and daytrip there is not a lot else for my other 5yr old ASD son - activities that are specifically targeted for children with ASD I mean. Free swimming passes still useable in our area till end sept. so these have been used a number of times! Has anyone else used/ been able to access these sorts of schemes and has it been a success?

Hi, I have sent you a pm, hope they come through okay the forum has changed a bit since I was last on here. If you havent got it post on here and I will contact you again. D

I recently bought a book called "a huge bag of worries" which is a childrens story about a little girl who starts worrying about everything and ends up with this huge bag of worries she cant get rid of and which just keeps getting bigger and bigger. She eventually gets some help from her elderly neighbour. Its a simple story, lovely pictures and costs about £3 on amazon. You can (I think) have a look inside the book. The woman who wrote it used to be an agony aunt in a newspaper apparently, but dont let that put you off! I have heard of some others, my friend bought one called "what to do when you grumble too much" which is about negative thinking and how to help your child change that pattern of thinking. I will try and think of some others and post again. I have both the books mentioned by the other posters on here and they are both interesting. D

I would also say that whether or not you want a diagnosis if you have a child that shows 'demand avoidance' and other traits associated with PDA (who is not really responding to the usual AS/ behaviour management techniques) then it is well worth looking at the 'handling guidelines' which Kathryn posted a link to earlier, and the info on the pda contact forum and giving it a try as it may work (sometimes!) A good book to read which many of the parents of PDA childrne have found useful is "The explosive Child" by Ross W Greene.

I can relate to that play session description! When my son was assessed at the Elizabeth Newson centre they sent me a very detailed report which includes some of the conversations he had with the therapists as part of the assessment and there were a few which read similar to the one you have posted - it seems very PDA like to me! I went to the PDA conference in Nottingham this year and they showed us some clips they had filmed during assessments of children with PDA (obviously with permission!) On clip was about 10 minutes long and it showed the psychologist and the child, and the psych was trying to get the child to do a floor puzzle which put the pieces in numerical order. The psych (who was very experienced and used to dealing with children like this) tried loads of different techniques to get the child to participate and at times (when the pressure from the psych was off) the child did appear to be starting to take an interest but as soon as the psych made any sort of movement or spoke the child would back off, and appear to be rude, and boisterous and confident and cocky I suppose but when the psych approached them they shrank away and you could see at that moment just how vulnerable and scared they were (as the 'demands' were coming thick and fast in his eyes, and then at the point where the Psych got near I think they feared being physically made to complete the task which was a bit too much for them) . The puzzle did get completed but at no point did the child go over and put ANY pieces in themself although they clearly knew which order they should go in. The psych got some responses from him using indirect methods such as pretending to not know which number went between 3 and 5 for example.......

oh and there are a couple of facebook groups relating to PDA, one of which has been set up by a young adult with a diagnosis of PDA - so they may be able to provide more personal explanation of their experiences of PDA Pingu (in response to opening post) think its called PDA (pathological demand avoidance) awareness group