Parly
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Posts posted by Parly
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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.
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I don't get it
Am I missing something obvious? It's lots of photos of people presumably people with Autism or parents of individuals with Autism? But there's nothing to raise awareness, it doesn't say who these people are, and it seems like almost all the people in these photos are happy so it could be argued that everything's good and nothing needs to be done for individuals with Autism. I don't mean that to come across really negatively, I'm just not sure how it's Autism Awareness. If you didn't say it was about Autism, it would just be pictures of lots of children and adults set to a song.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"
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Hi
My son has already been diagnosed with AS 4.5 years ago, and more recently with dysgraphia and dyspraxia - all by a highly respected ASD specialist in Scotland. Over the past few years CAMHS have raised the possibility of ADD and so R is currently being assessed. However, we had first meeting with another specialist (turns out he too is regarded as an ASD specialist). I was dismayed to find that this man was msking rather a lot of assumptions/statements/etc which I wasn't in agreement with over the space on one hour - bearing in mind for most of the hour R was extremely aggressive and abusive towards everyone and kept trying going AWOL. My concern, which I voiced, is that surely an specialist cannot make a judgement i.e. relaxed before making any judgements. Problem is that this guy appeared to be querying R's AS diagnosis. I'm worried sick - I've no doubt that AS is what R has (and nor does anyone else). Problem is that his highly respected consultant (Professor) is on leave and cannot be present at the meeting. Don't get me wrong, I don't want R diagnosed with something he doesn't have, however, here we are for a third time (at the instigation of CAMHS), R being assessed for ADD. I simply want to protect (given he gets extremely anxious/aggressive/etc) R as he's particularly fragile at the moment. I just want to ensure they make an informed decision after having spoken to a number of people (including his HT!!!) before putting this to rest. Really feel this guy was sitting back, not listening to anything I had so say, and made a host of snap judgements. He became noticeably displeased when I queried whether he'd truly seen all. I'm worried this guy could be quite damaging in the sense that he could potentially change/remove R's diagnosis - he was making statements that R's behaviour is so bad because it's been allowed to continue (something I disputed at the time, since myself and the school work very hard to discpline R appropriately). I tried to explain all of this, but he stated he wanted to call a halt to the meeting, at which point I became upset (tearful). The main even had the neck to say that it was nice to meet me again!!! I was able to continue and explained to the charge nurse, psychiatrist again stated he wanted to end meeting and I advised as I'd been asked a question by CN I would continue and answer question without holding him back. Very frustrating and very upsetting. I'm probably going to be portrayed as some kind of neurotic weak mother (in honesty, I'm more concerned about the outcome for R than concerned what's thought about me). Meeting takes place on the 24th and so it's going to be a long wait!
Caroline.
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
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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.
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My son (age 10, diagnosed PDA) has over last few months improved so much in terms of reduction in aggressive behaviour, controlling his temper more and behaving better in school and he seems to be much happier nowadays. A number of things may have contributed to this (new teacher, mum at home now, some work at home relating to anger management, behaviour chart at school - not needed now ) WE are SO pleased with this (and as ever hoping that it continues!)
However I do have some other concerns about things which I am not sure are PDA/ ASD related or if its something else as well (ADHD?) .I have listed a number of things about him below (would say they are centered around organisation, think some points may also fall under "executive functioning") and I wonder if any others have noticed similar traits in their PDA children/ themselves?
1)I have to prompt him to get dressed, and remind him to wash/ brush teeth each morning or evening.
2) He often rushes out of the door in a morning forgetting his lunch/ bag/ coat/ pe kit and myself to walk him there - he is focused on going to school but forgets all the things he will need in the day
3)If you speak to him it often appears he is not listening.
4) He does not sit still even when on pc or watching tv he constantly fidgets. He is same in school and the teacher overlooks a lot of it if it is not disrupting the others too much (I think if she pulled him up every time he would have been banned from the classroom. I have seen this for myself as I go in to help the children in the class once a week)
5) He takes off his coat/ shoes/ any other clothing he does not want to wear as soon as he walks in to the door and drops it on the floor and goes off to do whatever. This is same whatever he is doing, as soon as he loses interest it is abandoned.
6) He loses money, and other things that you would think are important to him
7) His bedroom is very untidy
If you ask him to look for something he can never find it even when its under his nose, and he appears to have no idea on how to make a logical plan to start searching for it.
9) After much effort on both our parts homework that he does finish often does not get handed in (and I have to stand over him and help him to make sense of it and keep him focused on finishing - I know the reluctance to do it is part of PDA)
10) He often leaves items at school such as PE bag, homework, shoes.
11) His mind is often focused on his obsessions (at the minute army, lego, bionicles and Bakuman) rather than what he needs to do
12) He is just starting to get the hang of telling the time
13) If he wants your attention he will be really obvious in your face no matter what you are doing and he often puts his hand up or shout out when he does not know the answer to a question
Part of his objectives on his statement are to work on these skills at home and school, but I do not have any bright ideas as to how (other than telling him each time, and to be honest I am getting fed up of hearing my own voice ). I have stuck up visual charts for weekday morning and evening routines - one of each in his bedroom and also the morning one in the kitchen, so he sees it before he runs out on me for school. Can anyone help with other ideas that do not involve so much verbal prompting/ reminding from me or the teacher?? Do you think more visual aids will help or will he just learn to ignore them?? Any books you can recommend?
Is it worth pursuing an assessment for ADHD? Would medication help with these things or are the other strategies enough in themselves to work therefore meaning a formal diagnosis not necessary to help him... Am worried about how he will cope in secondary school, and if he cant his behaviour will deteriorate again...
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.
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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!!
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I love that!! Just the sort of kid I love teaching as it totally appeals to my sense of humour (also known as my unwavering knack of annoying people). However, unless he had one of the old wooden rulers, I would actually be bringing him up on his answer, because most rulers extend beyond the 0 and the 30 a little way to allow for damage and accurate line drawing... 
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?”
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DS had his first opticians appointment this week. While he was still covering the first eye, the optician said "Now please cover the other eye"........
: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?"
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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.
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Hi all,
Just wanted to introduce myself- I'm Karen and I'm currently doing a degree at Lancaster University, where I have been listening to the views and experiences of parents who have children with a range of special educational needs, but especially ASD and Asperger's.
Are you a parent of a school-aged child with Asperger's or ASD in the North West? If so, I would love to speak to you. I am interested in finding out about the home-school relationships between you and teachers/teaching assistants. If you would like to know more, please get in touch and email kebuckell@hotmail.co.uk. It is so important that your voices are heard! Thanks a lot, Karen
Hi Karen - just sending you an email now.
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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.
Panel Hearing Farce - then Not Allowed?!
in Education
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Sorry - forgot to say it was a panel meeting held by the Local Authority.