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call me jaded

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Everything posted by call me jaded

  1. Well my very calm email has prompted them to call a meeting with the EP and numerous others. Hope we can get this sorted.
  2. My local authority's Aiming High funding is under threat. Please support our petition if you can. Parents in Touch is seeking support for Aiming High for Disabled Children capital funding to be spent improving the enclosed area currently used by the One O'clock Club to provide more indoor facilities and equipment suitable for older disabled children to play. Money is ring-fenced as far as capital is concerned but in today's climate there are concerns about the on-going costs of providing support to children who actually need it in order to access play. The petition is here: http://www.gopetition.com/petition/39516.html
  3. Direct Payments come through resource allocation panels in SS. If you don't qualify for services you just aren't going to get them. There are other pockets of funding - inclusion, extended schools, etc. You need to ask a lot of people until you find out what's available locally. In the current climate it's going to be very little and councils up and down the country are clawing back what they can as current year spending was slashed mid-year. So I would say you have zero chance of finding anything currently and you need to get on to your Aiming High representatives to campaign for some kind of provision in the future. I'm just going to post about a petition for an adventure playground - it is because of the same kind of pressures that my council needs reminding or their obligations.
  4. I do think it's fine to ask for about a third of the DLA as a contribution to living costs. About £20 a week would be fair.
  5. I'm on the steering group for my LA's Aiming High funding and it's supposed to be used for those children that would not normally access social care. It's about broadening and expanding the reach so that families don't have to be in crisis to access some kind of support. It was a three year programme with all the Big Money in this current financial year. Like everything else there is no news about next year until the budget (20 Oct). I'm at a regional event on Friday and I expect to be given some kind of clue about whether it will continue. Put it this way David Cameron was 'hi-jacked' several times during the election campaign by parents of disabled children and if he sticks to his election promises there should be something. Sally the CAF will not help you access SS if you don't meet the criteria. Simple as that. In my LA there was a SW who used to tell parents who enquired that their child was not 'disabled enough'. Charming. The kind of support you're describing is provided by charities and voluntary agencies. It was one of the reasons why our group formed - we were so fed up of there being nothing that we got together and organised something ourselves. And in the current climate it looks like we're going to end up with an adventure playground to run and when we do it no child won't be 'disabled enough'.
  6. Hi again! MG owner, hey? Class... What's the NAS thing like?
  7. Each SS department writes their own access criteria. From what you have written you are wanting to use the CAF to access social care. The sw is telling you that the access criteria is MLD. I think you have already secured that maximum amount of provision they're going to give you. My experience of CAFs (supporting families who've had one) is that they produce a mountain of paperwork and not much else. They're not usually a way of getting round the SS criteria, the focus is almost entirely around child protection (neglect, mainly, for children with disabilities). I wouldn't recommend you pursue one. My own LA has access criteria of SLD and autism. This got us five hours a week DP but workers with sufficient knowledge or experience are as rare as hens teeth so ours goes unspent for long periods. Then we suddenly find someone and have a spending spree.
  8. Hi, welcome. I love the Sunderland people - first time I went it was a joy to be among people like me. Don't imagine that there is some perfect provision out there that you haven't yet found. From our own experience you take a little bit of this and a little bit from that and make something to suit yourselves, researching and trying out as you go. I've also found it helpful to concentrate on one area at a time, so I started with ADHD and did what I could about the extreme hyperactivity, then I added in things to address dyspraxia, then I looked at non-verbal communication strategies, and so on. Sixteen years on and we're still adjusting, tweaking, trying again where we failed before. As we progress life gets easier, sometimes so gradually that you don't realise it. In the early days I used to keep a behaviour diary. When I look back at it now it's obvious how far we have come, but at the time it was overwhelming. You have a really great start because your son is keen to take on new ideas. My advice is to try just one thing at a time because you have a better chance of understanding what works than if you throw everything in all at once. Good luck with the journey.
  9. Thanks Sally, I have definitely been bitten. It's all in my first post - he has had lots of opportunities to do drama, including some trials I organised myself. The greatest barrier is getting him into the room - they aren't going to be able to do it and if they'd only spoken to the other site they would have told them. It's like starting all over again.
  10. What's being offered is no more than glorified child-minding. I can't face the thought of him sitting outside a drama studio for three years at enormous expense to the tax-payer. I've asked for a meeting 'to find out more about the curriculum'. I'm beginning to feel we're freaks as even an autism-specific special school is struggling. Where do we go from here?
  11. Me neither! And I can usually drive anything.
  12. Arrrggghhh. Four weeks in to his post-16 provision (same school, new campus) I've learned today that DS has been deemed most suitable for the practical drama course. This is so far away from his natural leanings that it couldn't be any more inappropriate if they'd tried. He has rarely taken part in any kind of performing art and has huge sensory issues about entering any kind of hall or open space. Just what will be achieved is beyond me. When they told me they would spend the next three years building his life skills and finding a curriculum that would be tailored to him and his needs, I believed them. Beating myself up that I didn't see this coming. With hindsight I should have seen it coming. Just when I thought I had three years to give some time to my other children... Does it never end?
  13. That's just so good to hear! I hope she enjoys being 'special'.
  14. There is some case law that has established that after school activities are very much part of the school day. If your son is guided to find the classrooms during the school day then he should have the same help for after school club.
  15. Hope you are enjoying the Well done on getting everything sorted.
  16. My mother says she used to find teeth marks in the butter I don't know how anyone can eat anything else. The smell alone...
  17. Thanks Sally - I cut labels out for my NT son all the time and I recall knitted jumpers being 'agony' if you didn't have anything underneath. One of my daughters refuses outright to have anything elasticated on her tops and her dad only wears cotton, so DS is in the 'right' family as far as sensitivity to touch is concerned.
  18. Yesterday Richard Madeley on Radio 2 was talking with someone who said "That's alright I'm artistic" and he reassured her "Awww no you're not, you're perfectly normal".
  19. lol Jota. Very competitive in our house too.
  20. Don't be too hard on yourself. It sounds as if you have been through quite a stressful time and it will take some time to relax and 'unwind'. The other thing to remember is that you are a teenager and that does make you feel a little bit different to everyone else anyway (puberty, yes). The really positive thing is that you are showing very good self-awareness and are looking to help yourself - good for you! Have you read "Freaks, Geeks and Asperger Syndrome" by Luke Jackson?
  21. I'm sure you're doing far more than you realise. DLA is not only physical care it's for anyone who needs someone watching over them and guiding and prompting, travelling with them on public transport, keeping them safe near roads, making sure they eat without setting the kitcen on fire, helping them choose appropriate clothing to wear, remembering to bathe, settling at night, getting up with them if they wake. My non-disabled 7 year old needs minimal help with all of these things, can make me a cup of tea and put a load of washing on with just a little verbal guidance. [who said slave-driver?!]
  22. Where there isn't a diagnosis the DLA assessors will write to whoever you give as the consultant and also the school. If they don't see the same difficulties as you he will be turned down. In our own case the special school he goes to put on the form that he plays football. He's never kicked a ball in his life. What he does is stand in the middle of the pitch whilst everyone else runs round him. It was sorted out. Worth trying to do it, but a caution that it may not go smoothly.
  23. Today he has dragged me into the sitting room (we do most things in the kitchen) and made me sit with him. He's lying on the sofa wrapped in a blanket and I'm sitting with my feet over his legs. It's a grown-up version of the OT sensory input we used to do. Everytime I make a move to get up he grabs my legs. He really makes me laugh that he can get me to do whatever he wants without a single word of language.
  24. I did the Early Support Keyworker training last year some time. It was really useful
  25. Hi Stuart and welcome! You sound very busy. I used to live near Stockport (for four years) and my sister-in-law is from Didsbury.
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