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  • juleloch
    Posts: 2


    I have an 8 year old boy, Oliver, who was diagnosed with PDA last September. He is also epileptic, and has bowel problems, and a previous diagnosis of autism.

    He is bright, handsome, with a wicked sense of humour and full of love. He also has very compicated special needs.... I don't suppose I need to elaborate on these to anyone reading this.

    I am embarking on the immense battle for his secondary education. LEA want mainstream with 100% support. I believe that this would be devastating for him. I have found a school called Swalcliffe Park, in Banbury that looks superb.

    I am going to need to make the case for tripartheid funding. I wondered if anyone can recommend any other specialist schools I could look at?

    Also any Ed Psychologists and SEN solicitors that have a knowledge of PDA, with its many implications!

    I would be so grateful for any feedback.

    with very best wishes,
  • Pamela
    Posts: 205
    I am afraid that I can not help with the legal side, but I would like to say hello. Our10 year old daughter also has PDA diagnosed at the EYDC in Nottingham Jan 03. She too has epilepsy and a bowel disorder. Is Olivers epilepsy under control? What types does he have? Olivia's needs are also severe and complex. I would love to chat either on here or privately.
  • fredam
    Posts: 4
    Hi Jules,

    Could I just ask you a couple questions? Im sorry I cant offer you any help on your questions....but...what is tripartheid? Is it even possible to start planning the secondary education so young, or do I have the school years confused? (Im an expat from the US). Are you having to start fighting it so much in advance?

    We cant even get the school to start the STATEMENTING process and would have to take *that* to tribunal for year 4!!! Is the process so different when they go to secondary school?

    Sorry to ask, but I can see a very long hard battle ahead....and I'm hoping its not so. LOL


  • Hi Jules,
    I'm an education officer (but I am writing in your support) - you don't need to apply for tripartite funding. That is something the LEA may want to sort out.

    You need to press the LEA to carry out an assessment and issue a statement. At the end of the process they have to spell out the provision your child needs and name a school. If you don't think the school they name is suitable you can appeal to the SEN Tribunal (see SENDIST on the web). The LEA should not hide behind any suggestion that they need to get tripartite funding before they make the provision. It is up to the LEA to provide for your child. If they want to split the cost with health and social services that is up to them and done behind the scenes. It should not affect you.

    I am currently looking for a school for a boy with a PDA diagnosis. The thing I am concerned about is to make sure that schools that claim to cater for PDA are able to show that they are doing something that is different from general provision for autism and recognises the essential features of PDA.

    Like a lot of people I thought PDA was just a form of autism - I don't think it is. The management is quite different.

    Before you invest a lot of emotional energy in a particular school check out several and ask them how their provision for PDA differs from their provision for autism. If they can't provide a convincing answer they may not truly appreciate what PDA is.

    If you need a list of residential and independent special schools, contact your LEA SEN section. When they send you a proposed statement they should really provide one. Because it is a long and bulky list and totally irrelevant to most parents they tend not to send them automatically but you are entitled to the information and they must provide it if you ask. That list will not refer specifically to PDA, but many of the schools that listed for autism are starting to develop facilities for it and are worth investigating. Don't be seduced into thinking that the more it costs the better it is. One of the best schools in the country is also the cheapest by a mile.

    If I can be of further help please contact me.

    With the best of luck

    Simon. :D
  • westd_Moderatorwestd_Moderator
    Posts: 1,292
    simon you seem to know a lot, do you know of any 'special' - or mainstream - schools in south yorkshire who have knowledge of PDA (primary and secondary?)
    We have asked LEA but no response - the school put the question in his annual review but we never got an answer
  • Hello westd, I have been an LEA SEN officer for 25 years - I know my way round SEN pretty thoroughly. I am happy to help if I can.

    I think you may be struggling to find any schools mainstream or special that understand PDA. Your best bet may be to find a school that has an open mind and help them to learn. Having said that I think it is increadibly difficult to manage PDA in a conventional (special or mainstream) school. The whole point about schools is that they made demands on children. I wonder if a home education programme may be an option - particularly if you could convince your LEA to work with you in some kind of partnership. In my LEA we are currently funding a small number of home education programmes quite successfully. Now I think about it, one of them may be PDA, The boy is 16 now but when he was nursery age he was so awkward it wasn't true. I realise his father if also someone who can only deal with things on his terms. He can't cope with "no" at all. Fortunately we have got on quite well and they have been very reasonable to deal with and I really feel the boy has done well. But your LEA may need to be convinced that it's not a case of ALS (awkward little sod syndrome!)

    If you want to know about the attitude of schools in your area it might be worth contacting your parent partnership service. If that term doesn't mean anything to you contact me and I'll dig out a phone number.

    Your LEA may fear PDA is just another syndrome that middle class parents have found on the internet and that it is going to cost them a bomb. Try and talk to your LEA about your hopes and fears for your child. Try not to see the LEA as some kind of "enemy" - ring them up and say you would like to discuss your child's difficulties with some one. Reassure them that you are not going to bully them into paying for an expensive residential school, you just want someone to chat to. Try and see them as partners.

    Educational Psychologists are a pretty good bunch - they should have heard of PDA even if they don't know anything about it, and be prepared to look into it with you.

    Your child's SENCO (Special Needs Co-ordinator) may be worth talking to also.

    If you need any specific help please contact me.

    Best of luck

  • MHO
    Posts: 111
    Hi Simon
    I found your messages interesting and informative and really appreciate that you are taking an interest in PDA. However I do not share your enthusiasm for home education, although I recognise that this may be the answer in some cases. It's very true that schools make demands on children but so does life! Living with a child who has PDA is extremely stressful for the parent/s and having one in the house full-time, with no break, is placing a very heavy burden on the family. A stressed out, irritable mother at breaking point is likely to exacerbate the existing tensions. Also the accommodation available in the home does not always provide a setting conducive to any form of study. My main objection, however, is that children need the companionship of other children and the stimulation of being in company of their peers. I agree that it must be incredibly difficult to manage PDA in a mainstream school but feel that it should not be impossible in a special school that has far smaller teaching groups. You are certainly right to observe that PDA is not a form of autism in that the management is quite different. My granddaughter spent some time in a unit for able autistic children but she became totally unmanageable because the methods used were far too rigid for her. She currently attends a fantastically wonderful special school and has made the sort of progress we would not have dreamed was possible. Sadly this jewel of a school is to suffer the fate of many other special schools in the country and is scheduled for closure as part of a "restructuring programme."
  • Dear Margaret,

    I see your point about having a PDA child in the home all the time. It occurs to me that like autism, PDA is a spectrum and a home ed. programme may only be suitable for a minority.

    I am currently working with a family who have just moved into this area having been badly let down by their previous authority. The boy is literally destroying the fabic of their home and the care agency we were paying mega bucks to look after him have withdrawn because the risks of injury to their staff are too great. We cannot find any where in the UK that will take him at the moment, though a residential school is prepared to come and assess him to see if they can help. I can see that a home education programme would not be suitable for him!!!

    How wonderful that you have a special school that is doing such a brilliant job. We must cherish our special schools. It is so sad that many are closing - though not in this area I hasten to add. I hope you realise that Local Athorities that want to close special schools have to go through extensive consultation processes. I would encourage you to protest very strongly if it is not in your child's interests. I would also be very sceptical about a mainstream school being able to manage PDA unless they are clear what it involves and are methodical in planning for children with the condition. The ed.psych working with the school needs to have a good grip of the subject and be able to guide and support them.

    From a professional point of view I would be interested to know how your grand-daughter's school is organising provision for her. What teaching techniques and behavioural management approaches do they use?

    Did you see a film called "The Horse Wisperer"? It was abouty a guy in the USA who learnt to mimmick the behaviour of adult horses to develop a bond with the one he was trying to train. I have this feeling that a similar approach may be effective with PDA children. Their teachers need to be able to "read" what is going on and just nudge and guide them in the required direction. Anything too forceful will generate the wrong reaction. It's like landing a big fish with a very fine line. You just offer a little resistance and then release it so the fish thinks he is going in the direction he has chosen but in fact he is doing what you want him to do. Does that make sense?

    Best wishes.

  • gram
    Posts: 18
    Info 'Horse Sense for People' by Monty Roberts (new & revised edition, 2001)
    Some quotes from this book - 'It is a teachers duty to create an environment in which the student can learn.' 'My goal is to leave the world a better place, for horses and people, than I found it.' I hope this can be a useful resource.
  • mazhawes
    Posts: 18
    Simon and Margaret, I've been watching this thread with interest and wondering if I can contribute to the discussion as eloquently as you both have- but here goes.
    As you'll see from my posts in other areas our son Oliver (7yo) has been in school only part time for 18 months and not in school at all since May- I hesitate to say 'home schooled' as not much schooling goes on, in the traditional sense of the word!- I tend to take a very laissez-faire approach as anything approaching a school type of approach is seen by Oliver as threatening and met with total refusal. He reads well, enjoys using the computer and watching TV, and amuses himself for hours with lego and so on. I try and let him set the pace, watching for when I think he might be 'receptive to learning', which could be in the car on the way to Tesco, or after the bedtime story, usually when you least expect it. My approach next 'term' will be based on using his favoured learning 'aids' the Discovery help him learn, and to increase his confidence, self esteem and motivation, and teach him learning skills, rather than to try and force feed him information in line with the national Curriculum, which would only lead to his further alienation and resistence to the world of learning.
    Of course it's not for everyone- every child and every parent is different .I am in the fortunate position of working from home and can manage my work around Oliver; and he is not a difficult child at home - his problems manifest themselves far more at school- even so I'm not a natural teacher and I'm not sure how long I will be able to maintain my commitment to it.
    Simon, I liked your analogy with the Horse Whisperer. I suppose I should look for a Robert Redford to look after my son! However, given the time it takes for any education professional to get to grips with the nature of PDA, and the complex temperament of the child, and the fact that many of the approaches are at odds with conventional educational wisdom, and are interpreted by many teachers as being detrimental to the welfare of other children in the class... I wonder if we are searching for utopia. A parent, of course, has a headstart in knowing their child better than anyone and not being bound to an education system that cannot respond to the needs of their child. (Incidentally I am not anti- school- our daughter is very happy at school, but then she 'fits the mould')
    As I have said elsewhere, we are not home educating through choice, but because we feel passionately that 'no school' is better for our child's welfare than the wrong school.
    Incidentally, we are on the Gloucestershire/ Monmouthshire border....anyone who knows of a good school nearby- we'd love to hear from you!
    Look forward to your comments,
    Best wishes, Maryanne
  • Dear Maryanne

    You appear to confirm my perception that PDA is a spectrum. The description of your son is exactly like one of the boys I have come across. Like you, the family found a really creative way of managing him, meanwhile another sibling goes to an ordinary school where he fits in quite nortmally. But home education is not for everyone, parents or children.

    I don't think you are searching for utopia - we have to find ways of helping each child according to their needs. They don't all fit the regimented model of modern schools. I think this has become worse since the refords of the 1990's, National Curriculum, Ofsted etc. Teachers have much less scope to be flexible. Our bureaucratic response has been to "statement" children and give theme a learning support assistant who tries to coax them along as best they can - sometimes in a parellel universe to the experience of other children.

    I am not sure how far Ledbury is from you, but there is an independent special school that deals with PDA - but for children with severe learning difficulties as well. I am not sure if that would fit your son. It may also be worth investigating some of the smaller independent days schools. they can sometimes cope with children who are a bit "odd" for the want of a better expression.

    Best of luck and thanks for the interesting posting.

  • Gram, thanks for reminding me that the Horse Wisperer was Monty Roberts - I was not aware of "Horse Sense for People" - I will look it out.

  • gram
    Posts: 18
    Info - Educational Heretics Press -
    see the pages of Roland Meigham link, there are also books, links click will take you to various Home Ed. orgs +, the Human Scale Education link found here lists 'small alternative schools' in uk.
  • mazhawes
    Posts: 18
    gram, that's a useful site, thanks for flagging it up. I thought I had scoured the web for resources, schools etc but this was one that I hadn't found.
    It's nice to see some activity on the site, let's keep it going!
    We saw CAMHS today again, they recommended some art therapy for Oliver. Does anyone have any experience of this? Thanks for the school suggestion Simon- I think we may have spoken to them but can't remember the name of it- I'll have to go back into the file.
    Spk soon,
  • thanks for the reply. the school he attends currently are trying their best- the whole school has undergone training on PDA and the teacher and assistant working with my son last year were brilliant. its move to junior school I am particularly worried about - fear of the unknown I suppose. home ed is a last resort for me I am afraid - I think it would all end in tears! I also think that he needs to learn to mix with other children as he needs to learn how to mix appropriately with others.
    It nice to see so much activity on the forum!
  • MHO
    Posts: 111
    Hello again everybody!
    I agree with you, Westd, that it's good to see more activity on the forum and long may it continue! Simon, in your posting of August 2nd, you pointed out to me that Local Education Authorities had to go through lengthy consultation processes before closing down special schools and urged us to protest. I assure you that there was no lack of protest! I contributed in a small way by writing letters to councillors, attending relevant County Council meetings and collecting signatures for a petition. My daughter, however did far more, along with other concerned parents and I do not know what more could have been done. There was a most impressive protest march and petitions with over 15000 signatures was handed in at County Hall. There were interviews on regional television, local radio and local newspapers and my daughter accompanied some other mothers to Westminster to enlist the support of some M.Ps. All these efforts failed to divert the Council from voting the LEA's restructuring proposals through. Our last hope was that the Schools' Organisation Committee would not give their approval and many of us, together with concerned members of the public, wrote letters of objection. All was to no avail and in July the SOC, meeting behind closed doors, voted unanimously to approve the proposals. Fortunately, from our point of view the closure will not happen until 2007 but I am so sad to think that other children in future will be denied the opportunity my granddaughter has had of attending this very, very special school.
    I have quite a lot more to say but time has run out for me at the moment! I'll write again soon.
  • mazhawes
    Posts: 18
    how/ where did the school access training on PDA? Was this through the Nottingham Centre and what form did it take? Thanks,
  • MHO
    Posts: 111
    Hi there once again!
    I said I had more to say so here goes: -
    Simon, you asked what teaching techniques and behaviour management approaches were used in my granddaughter's school. The answer has to be that I do not precisely know, but whatever they are they appear to be effective. What I do know is that the school is a very warm, friendly and welcoming environment with very happy children. I've been there on a number of occasions when there have been special occasions such as harvest festivals or class assemblies and there's a palpably wonderful atmosphere there. The head teacher and his staff exhibit seemingly limitless patience, great tolerance and a deep understanding of the pupils' individual needs. No child is seen as a problem and the emphasis is on the positive rather than the negative with the teaching staff concentrating on developing strengths rather than trying to eliminate weaknesses. Every achievement, however small, is celebrated and, as a consequence of this approach, my granddaughter's lost self-esteem has been slowly but steadily restored. She now has far more confidence in her abilities than she ever had before.
    All the above is what I have personally observed. Before embarking on this posting I spoke to my daughter and she has told me more. When my granddaughter first started at the special school she had a teaching assistant specifically employed to give her one to one attention full-time as she was unable to cope with a class situation for more than very short periods at a time, even though there were fewer than ten children per class. Her noise levels would rise with her anxiety levels and after a very short while she was withdrawn to a private room to work on her own with her TA. She was NEVER made to feel that this was a punishment for her lack of control and it was made clear to her that she was being withdrawn for her own good to give her the opportunity to calm down. Her own wish to be part of the class and to join in with class activities was encouraged and whenever an "explosion" occurred and she was removed from the class, the reasons for the outburst were analysed and she was taken back as soon as she was ready. A turning point was reached when she learned to recognise that her anxiety levels were rising and that there was a strong chance that she would erupt, at which juncture she would withdraw herself! She gradually developed more self-control and by the end of this school year she was able to spend most of the day within her classroom.
    One great advantage of being in a special school is that ALL the pupils have their own individual difficulties and are not in any way judgmental of their classmates. If a child lies down on the floor and has a tantrum no one bats an eyelid! My granddaughter continues to exhibit challenging behaviour on occasions but she has NEVER been sent home or excluded, even temporarily, from the school. How different from how it was in a mainstream school! I appreciate that mainstream schools have a tough time battling with all the new government targets etc. and have to worry about their place in the league tables. With large class sizes how could the teachers cope with a disruptive PDA child as well? At one school my granddaughter attended the staff liaised with the educational psychologist, who was familiar with PDA handling guidelines, and they made some progress at first, but the challenging behaviour was extreme and there were many complaints from parents etc. etc. Eventually it all ended in tears and in permanent exclusion.
  • Amanda
    Posts: 281
    I suppose I'm really lucky as Mark is in a special school for autism but the staff do have a real understanding of PDA and this has helped with the management of Marks behaviour. I think the most important thing is that we understand his needs and can work as a team to make sure that there is as much consistancy for Mark as possible. To give you an example we work very closely with his class teacher to make sure that information is both prompt and effective. If Mark comes home to me in a rage because Roger his teacher has said he can't do something or has made a rule or something like that I will immediately back him (Roger) up, regardless of whether I agree or disagree with the action taken. (I will then sort it out quietly with the staff away from Mark)
    It is really important that we don't allow Mark to manipulate a situation by playing one of us off against each other and by working together we actually reassure Mark with this consistancy.
    I feel very lucky to have Mark in this school and he has really benefitted from being there. I wish however that some of the other agencies that are involved with school had such a good understanding of PDA and it's implications.

    I had a long and thorough conversation with a lady from the connections team who tried to work with Mark. She had no understanding of the impact PDA had on Marks life.
    When I explained to her that she had put Mark in a situation that he couldn't cope with she said she'd been sure at the time he'd be ok because he said he'd wanted to go. :roll:
  • Helen W
    Posts: 42

    I'm Helen and have a 10 year old boy presently just hanging on at Primary school. He was exluded twice last week. His school life has been a trial for everyone, and although the LEA would obviously like him to attend our local secondary school, we have begun the rounds of the local special schools.

    The schools which seem to have PDA children seem to be on the Notts/Derbys border possibly because they are of close proximity to the diagnotic centre in Nottingham.

    Does anyone out there have any experience of any of these schools?
  • Sorry Helen cannot help

    Maryann, sorry have only just read your post.
    The training re PDA was not from the centre in Nottingham but I think from the child development centre at our local hospital. I am not sure what exactly they were taught - think it was mainly based on all the information available in leaflets etc from the PDA website...... (dont quote me on that)
    Am pushing for a referal to the centre at Nottingham so we can check that PDA is correct diagnosis and to get some advice and help from them as I am not getting a lot from anywhere else (because no one else knows much about PDA other than what is in the info on the website - some people are bothered but cant help as they dont understand condition). The school would also like to attend and speak to the people at Nottingham too.
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