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Parly

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About Parly

  • Rank
    Salisbury Hill
  • Birthday 10/24/1977

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    Female
  • Location
    Lancashire
  1. Sorry - forgot to say it was a panel meeting held by the Local Authority.
  2. Sorry if this is already covered somewhere else and I’ve missed it. OK, here’s the drill. My ten year old son is due to start secondary this September. He is in the process of being assessed for ASD, ADHD / ADD. Assessments have already taken place with the Consultant Paediatrician, Occupational Therapist, CAMHS Psychologist and we’re still awaiting assessments with Speech & Language therapy. Once they’re all completed, he’ll be discussed at the Social Communication Disorder panel. The Clinical Psychologist is continuing to work with my son because of his severe issues with anxiety, low confidence and self esteem, night terrors and Trichotillomania (pulling out his eyelashes, eyebrows and hair) The poor lad has been bullied, isolated and made to feel acutely aware of how “different” he is since day one so his confidence is just shot at beyond belief. The LEA refused our request for a place at our preferred school and instead, allocated him one at the secondary my thirteen year old daughter attends. The preferred one has just 700 pupils and has an excellent reputation for knowing its pupils extremely well and working hard to build confidence and develop good relationships etc. The other one – the one they’ve allocated him is a vast school with over 1,400 pupils and in short – it’s a bit pants really. My daughter is rolling on there but she’s very bright, sociable and has none of the problems her brother has. Another reason I don’t want my son there is because his big sis adores him and mothers him like nobody’s business when I’m not there. It’ll affect her schooling if her younger brother is there because she’ll spend every day watching his back, fighting his battles and generally worrying herself stupid over him. My son’s current Yr 6 wrote a letter in support of the appeal and stated how detrimental it would be for him to attend the ridiculously sized school and the OT report made reference to the difficulties he’ll endure at secondary and how these can be remedied etc. The tribunal hearing was last Tuesday and it was an absolute farce. The panel had no idea about ASD’s or how they affect the daily lives of children with them. They assumed my son took medication and seemed baffled as to how he could be treated without. They asked whether I had any other children (my daughter his mentioned throughout) and when I explained about my daughter, they asked “Is she OK?” One gem of a panel member even suggested I should be satisfied with the allocated school because I “have to drive past it to get to the other one anyway – it’s going further out of your way”, as though that’s my main worry!! I left the hearing feeling as though they didn’t have the faintest idea what my concerns were, what enormous difficulties my son has already – let alone what he’ll have to contend with wherever he goes and generally felt deflated and not at all hopeful. As I’d half expected, a letter arrived on Friday morning saying the appeal is “not allowed” and that’s that. I’ve since discovered that I can complain to the local ombudsman and hope for a fresh hearing with a fresh panel but what I want to ask is whether they should have included someone with at least some knowledge of ASD? I felt as though I had to somehow give them a crash course in the whole ins and outs, in what was already an incredibly difficult situation – in about fifteen minutes.
  3. Parly

    Marching On

    See what you mean - I just viewed the clip. Copied the accompanying text which does say a little more about it. Just a little mind... "In July 2010 seven like-minded campaiginers came together and formed ACT NOW. 9 months later TEN THOUSAND supporters are marching with ACT NOW to raise awareness of the 'real' cost of the budget cuts and the impact the the benefit assessments will have on adults with autism. The faces that you will see in this video are the faces of some of our ACT NOW supporters"
  4. Hi Caroline – I’m aware the date for your arranged meeting has long gone and just wondered how it went? I’ve also had similar issues with CAMHS although in fairness, had the same problems with other professionals during assessment. To date, CAMHS were definitely the worst for the way they approached things and their tendency to make too many assumptions. I wasn’t entirely taken with the way they completed their assessment to be honest and like you, left the meeting feeling that was 90 mins of my life I'll never get back. It was pointless. Like you, I find I sometimes become so frustrated that I’m on the verge of tears and know if I start trying to argue my case, I’ll end up bawling with my Son sat right there – the last thing I want. The CAMHS Practitioner gave me the impression she thought I might be a neurotic Mum that just wants her kids wrapping in cotton wool etc, and I think she’d made up her mind before even setting eyes on me. What I tend to do is write down / type the points I need to make and emphasise key areas I think have been overlooked and need further consideration. I also point out the reasons for putting everything down on paper and I’m very upfront and honest in saying that I find it hard work to physically talk about some things and I want to avoid an emotional outburst when put on the spot. Plus, it helps if they can keep a copy and refer to it when they’re compiling reports and it allows you to get everything down without forgetting, being cut short or interrupted or just not saying what you want to because it’s upsetting. Hope all went well (if it went ahead) and that if you did manage to put it off a while longer, you’re arming yourself with all the necessary ammo as we speak! Parly
  5. I recently read Wendy Lawson’s “Understanding and working with the spectrum of Autism – an insider’s view” and sobbed buckets, especially when I read the comments made by her teachers on her school report.
  6. Hi Westie. OK, my son is also ten years old and although not formally diagnosed at the moment, it’s felt almost certain the eventual findings will be Asperger’s, Dyspraxia and / or ADHD. There is also an element of Tourette’s too I reckon! He’s not as bad anymore but still has this overwhelming, almost uncontrollable urge to blurt out whatever pops into his head – usually the most inappropriate thing he could possibly say at that particular moment! Just running through your questions and answering as and how I can relate really. 1) Yes. Sam would roll out of bed and not get washed, brush his teeth, hair and would quite happily leave the house with his clothes on inside out and back to front. 2) Yes. He’s bawled his eyes out before now because he thought he’d missed a trip he wanted to go on after forgetting to tell me about it. I spent ages messing about and getting him on it etc, then left the consent forms in an envelope right beside his bag. “DON’T FORGET TO GIVE THIS TO YOUR TEACHER” x 10... he moved the letter off the top of his bag and walked out without it. 3) Yes. I have to make sure I’ve got his attention and insist he looks at me when I’m saying something and then repeats it back to me afterwards. 4) Yes. Even in his sleep, Sam is extremely restless and spends the whole night tossing, turning and shouting out loud to whoever is featuring in his dream 5) Yes. Sometimes, there’s even a clear “trail” of items leading from the front door to the kitchen, where he just discarded items of clothing as he walks. 6) Yes – see answer 2. 7) Yes. It’s an absolute disgrace. 8) Yes. Sometimes I think so much effort goes into actually trying to find whatever he’s looking for that he can’t scan things right under his nose. 9) Yes! It really annoys me that he’ll put time and effort into doing his homework over the weekend and then not hand it into his teacher. Just this week I spoke with his teacher about it. You’d think the teacher would want it off him to be honest but I think Sam sometimes says he’s forgotten to bring it in – even though it’s inside his bag where he put it. 10) Yes. He came out of school once with someone else’s shoes and couldn’t work out why his feet had suddenly shrunk in size. 11) Yes. Sam’s is Xbox and the computer. I have to put a time limit on how much he’s on them and tell him he’s not allowed anywhere near unless and until certain things are done. 12) Yes – mainly with the 24hr clock. 13) Yes. He often gets rollocked for interrupting and knows straight away that he’s going to get rollocked. “Mum can I – sorry....” Again, I think there’s something going on behind the scenes that isn’t too unlike Tourette’s. Sometimes I can see that it takes physical effort NOT to say something. We also had home / school plans and goals on how best to manage it, including charts, reminders and other things to prompt him. However, his short term memory is so poor that he even forgets about the reminder sheets he’s supposed to use – seriously! I’ve had to get out the white flag with this one because he genuinely can’t help a lot of the issues and no amount of sheets and charts will change that. Sam has cried before now because he kept getting told off for making noises, fidgeting and shifting about etc, because he knows he shouldn’t do it but he doesn’t know when he is. What I find works is hitting him where it hurts so to speak. I know he would spend his entire life playing the Xbox and that as soon as he walks though the door, that’s all he wants to do. The deal is that he isn’t allowed anywhere near it until he’s done what needs doing. This is the thing I find motivates him and gets him shifting. He now comes straight home, rags off all his clothes, bags and shoes as he normally would – then retraces his steps and puts them all away, does his homework and whatever else he has to do and then he’s free to play when it turns 6.00 The issue of medication has been discussed with our GP but personally, I won’t consider that an option unless and until Sam feels life is too hard work without that extra bit of help and I can’t help but agree.
  7. Can’t offer any hints and tips I’m afraid because I’ve never been. Just wanted to say have an absolute blast - Orlando certainly sounds “doable”. Enjoy!!
  8. I wish all teachers would give that sort of response! Mrs Bossy isn’t that type though I’m afraid. I think she half thought I’d turn crimson and apologise for Sam’s insolence etc but before she could even finish quoting Sam’s little speech, I fell about laughing. :lol: I remember we had an ace conversation once in the car when he was about six. He was sat in the front seat and I pulled over to the side of the road to let a fire engine go past, which had lights and sirens on full go. Sam said, “I wonder if they’re going to a cat stuck up a tree?” “No bud. I don’t think they’ll be going to a cat stuck up a tree” “They might be. How do you know they’re not?” “Because they have sirens and lights on. That means they are on an emergency call” “Well why wouldn’t it be an emergency to help a cat stuck up a tree? That could still be an emergency” “If there has been a bad car accident and people are trapped in the cars, that’s an emergency. They need to get there quickly. If a building is on fire, that is an emergency and they have to get there quickly. A cat stuck up a tree isn’t exactly an emergency is it?” (Long pause) “Well... what if the cat’s on fire? Would that be an emergency?”
  9. :lol: :lol: :lol: :lol: First thing that came into my head when I read that was - "Aaaahhh see - now when I do that I can't see anything. Does that mean I'll need glasses?"
  10. Sure he has some difficulties, but by Jove my Son doesn’t half come up / out with some diamond comments, many of which defy a response. Here are a few of his best - “How do you make the Tardis look so much bigger on the inside?” (To a BBC designer who had invited a packed out audience to ask questions about special effects on Dr Who) The head teacher was outside school asking parents who owned the silver Hyundai that was blocking an entrance outside the church - “Does anyone know whom this car belongs to?” “It’s God’s car - isn’t it?” Whilst discussing the topic of epitaphs in class, the teacher asked everyone to give an example of what sort of they think should go on a person’s gravestone. “Waaaahh!!! it’s dark – I don’t like it!!” Bossy teacher told everyone to find something in the class, predict how long they thought it would be, then measure it, record it and compare with their prediction. Sam hadn’t quite grasped everything and asked if he could measure anything Bossy huffed and said “Yes Sam! I’ve already said – ANYTHING” “OK” Ten minutes later – bossy asked everyone to read out what they’d measured and when it was Sam’s turn, he stood up and said. “I chose a 30cm ruler. I predicted it would measure 30cm. I measured the ruler and it was 30cm long. My prediction was very accurate” Touché Sam... play on.
  11. Hi Karen - just sending you an email now.
  12. Hi – I’ve found that my son seems to present as something of an enigma during assessment etc, largely because although he very obviously meets the criteria for the most part, the things that he doesn’t meet – he so doesn’t meet if that makes sense? For example, he’s the kindest, most affectionate, well behaved, well mannered lad who would not be able to harm a fly if someone had a gun to his head. He’s incredibly cautious and doesn’t think any level of risk is one worth taking and has grasped the concept of sarcastic / dark humour, despite this being a struggle for a while. (I know it’s not something any kid should have to master the art of but sarcastic banter and dark humour is rife in our house – it’s how we are) Despite having exceptionally bad co-ordination overall (ranked as being on the 1st percentile during the OT’s Movement ABC-2 test), he loves drumming and has managed to suss out how to have his hands work independently from each other. It's bizarre. He has been assessed by what feels like the world and its wife. Educational Psychology, CAMHS Clinical Psychology, OT, Physio, Paediatrician, Speech and Language etc and they often remark on what they consider “unusual”. I wonder whether this has been what’s caused so much delay to be honest.
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