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New to PDA
  • Lucy
    Posts: 5
    Hi, I am new to this site and have been reading the posts and finding them very interesting - interesting as I realise that there are other parents out there with children who have PDA. To be honest I have never heard of this before and I now feel that I need to know everything about it! Where do I begin? Can anyone suggest any good reading material? Websites?

    My daughter is four years old. I was advised that my daughter had PDA on Wednesday. Although my daughter does not have all the traits of PDA, she has some of them.

    My daughter is due to start school this year. The EP has seen & observed my daughter and is preparing all the reports to take to the Education Authority.

    Is there anything I should be doing or considering? I would be very grateful for any advice.

    many thanks, Lucy.
  • webbwebb
    Posts: 2,566
    Hi Lucy,

    Welcome to the PDA forum, I joinned in Jan 06 and have found it a good source of help.
    My son Matthew aged 12 has PDA, he is in a special school because of his very challenging behaviour. he has all the traits of PDA ie avoidant, controlling and fantasies etc.
    Most of the info. I have has come from the Elizabeth Newson Centre in Nottingham. They have their own web site and if you write to them they will send you the info they have on PDA. Just a little warning there isn't much info. out there yet, no books have been writtenas yet. The Elizabeth Newson Centre was the first place to research, study, diagnose and write about this disorder(1st research done approx. 25 yrs ago).
    You have done very well to get a professional to diagnose PDA in your daughter, some won't recognise it yet and say Autism/Aspergers or Pervasive Developement Disorder so well done you!
    The Elizabeth Newson Centre are having a conference in June in Nottingham regarding PDA, you might like to enquire about it.

    Hope you find more info.
    Keep posting and I will gladly answer more Questions.

    Paula
  • Lucy
    Posts: 5
    Paula

    Many thanks for your reply. Yes, I am having a problem at the moment getting information. All the info I find I have read before, it just seems to be the same thing!

    At what age was Matthew diagnosed with PDA? Has he always had the same traits of PDA or have new things developed with age? I wonder this about Lauren, as will she develop other bits of PDA as she gets older? I have so many questions at the moment!

    I have contacted the Elizabeth Newson centre, I kept coming across this centre on the websites and information I have been given.

    kind regards, Lucy.
  • webbwebb
    Posts: 2,566
    Hi Lucy

    Matthew was diagnosed Autistic when he was 4 yrs old, he entered special school when he was7 and they said it was PDA, this fit him perfectly. When he was younger ie 3-6 yrs he had very little speech and acted like a hyper-active Autistic child, we now realise that was his way of avoiding our requests/demands. Now he is 12 he has all the traits of PDA, he is very controlling, he has good speech, he is extremely avoidant and will destroy the entire house rather than put his shoes on if he is told to do it (we use a lot of humour and reverse psychology now ie "you can't put your shoes on your just a baby, I don't believe you can do it, go on show me then" He has always had good pretend play when it comes to him"being a dog or a dragon etc" this type of play are his fantasies.
    Speaking from experience they can change/develop, I believe he always had PDA but it came to the surface more at approx.7-9 yrs.

    As for info, most of the info I have has come from The Elizabeth Newson Centre and as far as I am aware this is the only web-site for parents of PDA children.

    Are you able to get an Education Statement in place for when she starts school, the E.P. can advise you about this. I presume your daughter will need extra support in school.

    Do you know about DLA benefit you can claim for your child and will you need support with your daughter outside of school ie special Playcentres for special needs children ect.

    Always here to help if I can
    Paula
  • Lucy
    Posts: 5
    Hi Paula

    Many thanks for your reply.

    With Lauren is has been very difficult as I was totally unaware that there was anything different about her. I don't have other children to compare her with so always thought her behaviour was normal. The only thing really is that she doesn't do what you want her to do, so I had got round that without realising I suppose what I was doing. I must admit I do say things like " I bet you can't do that" she will then do what ever I have asked. If I asked her directly she wouldn't do it!! (At pre-school they use Pooh bear to get her to to things!!) But then sometimes she will surprise me and do what I want her to do, so her behaviour is inconsistent.

    I have seen the EP, but this was before Lauren was diagnosed with PDA. I gather that she is in touch with all the professionals we have seen and is asking all of them to prepare a report on Lauren which will then go to the Education Authority. I have been told that Lauren will need 1:1 support at school. The school she has been accepted into are currently unaware that Lauren has PDA, so the situation is at the moment she may not go there. It is all a bit up in the air at the moment.

    There is a specailist language unit where I live, so maybe she will go there. I believe that some children do well in mainstream school if the school are prepared to accept the child and give them the time, help & support they need. Did Matthew start off in a mainstream school or has he always gone to a special school? How does your son cope at school?

    I didn't know that I could claim DLA benefit, thanks for letting me know about that. I will find out about this.

    I contacted the Elizabeth Newson centre and they have emailed me today & advised they have sent me some information.

    take care, kind regards, Lucy.
  • webbwebb
    Posts: 2,566
    Hi Lucy

    Glad I told you about DLA, there is also Carers Allowance if you stay at home to look after your daughter and don't earn more than £80 per week. The forms are all lengthy and difficult to fill in so you may need some help ie citizens advice or another parent of a PDA or ASD child ect.
    Sounds like the EP is doing her job. You are right about mainstream schools, as long as they are very inclusive of children with special needs and will bend there rules/routines to help your child she should be fine.
    My son did spend his first 3 yrs in mainstream but he has moderate learning difficulties and extremely challenging behaviour, they weren't meeting his needs and they did admit it. He was also always taught on his own, not very helpful to his social skills and not very inclusive! So it was time to move. He is now at an Autistic School and doing much better.
    He is fully included into his class and the teachers know exactly how to deal with him. He will still hit out at other children and have lots of tantrums but he is enjoying school life much more because the whole day is tailor-made to the needs of ASD/PDA children.
    As a pre-school child he was hard work but quite a lot of the problems really surfaced when he went to school. School life is different to home life, the need for them to conform is so much greater and they are not able to conform!

    Maybe you need to find out as much info. about all mainstream/special schools in your county so that you can make an informed choice about which school your daughter should attend. It's never too early! LEA will give you a list or try nas web site under PARIS.

    Take Care
    Paula
  • Lucy
    Posts: 5
    Hello Paula

    Many thanks for your reply. I printed off the DLA form - blimey! Will be working my way through that one! I spoke to the lady at the assessment centre & they will help fill the form in as they do them all the time.

    I have had an Early Years Action Plus Summary Report from the EP today. She has observed Lauren a few times and she is saying that Lauren will need support at school. She is also requesting that a statutory assessment of her sen to be carried out. So I guess now things should start moving along a bit.

    The report was quite daunting really - but I'm hoping now that Lauren will get funding for support at school.

    At least you son is doing much better now in the school he is at & that he is enjoying school life. It must make such a difference for him. I am going to go and look at the other schools in my area and see what I think will be best for Lauren.

    I looked at the nas web site, PARIS - that was a great help. I never knew there were so many schools in my area. That is a very interesting web site, many thanks for letting me know.

    The assessment centre that Lauren has been attending have been extremly helpful & so has the paediatrician. They have put me in touch with people in the area for support & I have been invited to attend some talks. So, I am feeling a bit more positive about things, than I did a couple of weeks ago.

    Take care, kind regards
    Lucy
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