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  • Amanda
    Posts: 281
    I agree with the fact that people with disabilities should have the right to decide what they want to do, where they want to live and how they should be supported and of course that is definitely what services are working towards. However am I the only one who has serious concerns that many of us with PDA young people will be denied help and support as our young people reach adulthood based on the fact that our young people don't want it.

    It worries me that my son will choose the opposite to whats good for him or what would help because of his PDA and lets face it, give him a choice and he'd'choose' to live in his room forever playing his PS2. On top of that what happens if he 'chooses' not to do anything or be placed anywhere after leaving his special school placement, what happens if he also 'chooses' not to have support at home or any outside help? Which I know given the choice he would. Where does that leave us? Up a creek without a paddle comes to mind!
  • Amanda
    Posts: 281
    I have a home visit with the adult ss team on Tuesday next week, we'll see how that goes.
  • webbwebb
    Posts: 2,582
    Hi Amanda

    I hear what your saying and totally agree!!!

    I know your son is coming up to 18 yrs and will be going from child to adult care.
    There is so little support ie education or at home for our children when they are under 16, but I am begining to realise that there is far less when they turn 18.

    My son is only 14 but I am already thinking about the long term future!

    I know your son is similar to mine in that they both have PDA and Autism(which includes severe or moderate learning difficulties) and I do agree that even though they have a very clear voice, it is not sound!!! I know you won't mind me saying that and I totally agree that some disabled people are very capable of making long term and vital decisions for themselves but our 2 son's aren't!
    If someone gave my son a choice of an ice-cream or a 100 pound note he would take the ice cream!
    We have set up befriending with social services but most of the time he refuses to go!

    I really do hear what your saying but feel I don't have any answers.

    Does anyone on the site, who has an older child know how to over come this problem???

  • dirtmother
    Posts: 898
    Have Mencap and mental health charities got any support for us in this area?

    I think it is amazing the advances that have been made in empowering adults with learning disabilities (and there is a much higher rate of autism in learning disabilities) and presumably expertise in the same with people with long term serious mental health issues.

    I do feel though that it is often a very hairy business for carers, especially parents, who end up carrying the can if there is inadequate support (as there so often is). Plus, surely, the rights of carers to have as much right of self-determination about their own lives should not be forgotten - which may be the real anxiety here?

    Anyone hear the issue of the lack of support for adults with autism being raised in the news today? It will be interesting to see what happens with that one.
  • Amanda
    Posts: 281

    I do feel though that it is often a very hairy business for carers, especially parents, who end up carrying the can if there is inadequate support (as there so often is). Plus, surely, the rights of carers to have as much right of self-determination about their own lives should not be forgotten - which may be the real anxiety here?

    I suppose its both really. I do worry about Marks need to isolate himself and I can see him down the line as a hermit refusing to leave the house for anything and allthough I know this is 'his' choice I don't neccessarily think it's a healthy one. The other side of that is the impact that that has on his dad and I.
    You know there are stages in life that I had expected to take advantage of, getting married, having children, watching them grow up and then spending some time enjoying my husband and watching my young people take the lessons we have taught them and the values we have installed and making their own lives and their own families.
    I know that there is a grieving process when a child is diagnosed, but unlike the process that occurs after a death I think this process goes on and on and keeps reaccuring at milestones and times when we are unable to participate in activities or make selfish choices that take into account our own wants or needs.
    I suppose of we are honest many of those grieving episodes have come after meetings with specialists and service providers when I have been forced once again to go back to birth sometimes to get them to understand the difficulties that the boys have.

    I often say that I sometimes feel like a criminal with one of those ankle bracelets on that restricts choice and the ability to walk away when I would like some time for me.
  • webbwebb
    Posts: 2,582
    Hi Amanda

    How did the Social Services meeting go and are SS and school any closer to providing for him when he becomes 18 next year?

  • Amanda
    Posts: 281
    Actually Mark will be 18 in two weeks.

    The meeting went as well as could be expected with steps being taken to get the ball rolling and get Mark into a placement after he leaves his school. Thing is places are few and far between and so we have to take a place as it comes up and that might mean him moving before he is meant to move school, not that Ive told him that yet as he is anxious enough about it all at the moment.

    What did come out of the meeting was their agreement that the person centred approach might not be to Marks advantage and that decisions were going to have to be made for him on the understanding that we all have his best interests at heart. It came as a bit of a shock to hear Mark described as by far the most challenging child at the school, especially as he has such great speech and can appear so socially able. I know he has some major problems but its not often I hear it from other people.

    I feel a bit more positive and a bit less anxious about the whole transition thing, his teacher has a real understanding of Mark and his needs and together I think we were worthy advocates for Mark and his needs.
  • mango69
    Posts: 967
    Thats good news - I'm glad it went well Amanda. It's funny how it still shocks us to hear our children being talked about like this - even though we know it ourselves. Its perhaps that false sense of security we get when they are being little angels!
  • Lixina
    Posts: 289
    One big problem is that very often help comes with strings attached - rules that are often more unpleasant for PDA people than most disabled people.
    A lot of special help is disempowering - the control lies not with the person getting help, but the institution providing help. If you apply for help, you are tested, and someone else decides what help to give you. The 'helpers' often feel allowed to boss you around - 'for your own good'. Many disabled people don't like this - if part of your disability is a strong aversion to other people controlling you, it's especially unpleasant.
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