After CAMHS - what's next? Support for older teens.

[KathyM]

Hi everyone

Hope you're all well? I'm laid up with my back again so am taking the opportunity to research as much as I can for Dan (16) my middle son who was diagnosed with autism in December.

CAMHS are at the point where they will be discharging him, as in the psychiatrist's words, they don't take them beyond diagnosis. We are lucky in that the OTs at CAMHS want to do some work with him first so this gives me a chance to ask around as to what I need to access for him next?

Dan has a Section 139a in place for college so that is covered, although college are not receptive to any input from CAMHS and myself and his progression coach has even told him CAMHS are wrong and he doesn't have autism (?!). CAMHS have suggested moving him but that's difficult as he also has dyslexia and that's holding his English achievement back and there are no other courses available for him without his Level 1 English. That's by the by, I think I know how to handle that but it's other things I'm worried about.

Dan has quite severe sensory issues surrounding noise and touch mostly (as well as chewing and sensory seeking behaviours that I haven't managed to pin down yet). He has not had a full sensory profile done so cannot be diagnosed with SPD, which is what the psych feels he probably has (his cousin has Asperger's and SPD). They don't do sensory profiles at that CAMHS, but I am pushing for some form of recognition of the level of sensory issues he's facing, so that's another bit in hand and just about covered.

One of Dan's friends (I use the term loosely as Dan does not understand friendship in the slightest) has moved out of home and into a flat with his girlfriend, and rather daftly offered Dan the spare room. Dan came home with the intention of moving out straight away and obviously this was a bit of a scary time. We have managed to talk him out of it and to say we will support him in getting his own place at 18. I feel he won't be able to do that in an unsupported tenancy and CAMHS agree.

Dan is very socially naive, believing anyone he meets is immediately his friend or enemy. This has led to him going off (albeit drugged in a drink by a stranger) with people to a remote location where he was held down and burned with lighters, then beaten up and dumped in a pond and left. It has also led to him shoplifting, when these "friends" told him to "hold their beers" while they all walked out of Tescos and Dan was caught. Dan didn't have a diagnosis so has a low level record for that, which they said he wouldn't have got had he got the diagnosis before then as for that level they can take into account mitigating circumstances. He also has a history of running away to strangers he met on Facebook on his "friends" phones. These incidents are a year or two in the past and he has been safe for over a year now, after a breakdown in late summer 2012.

CAMHS are planning to do some work with him and an OT in college, working on social skills, recognising emotions and seeing if he's capable of some level of aspirations (he has been shown as not being able to plan for the future and only being capable of thinking in the past and the present). They are also going to help me learn more about his sensory needs and to raise his sense of safety. They are going to educate the college tutors and also give Dan some hypnosis and NLP to work through his post traumatic stress.

In light of Dan's needs, and despite me being ever so grateful for the OT help, we are looking at Dan being off their books within 12 weeks and I don't know who to go to after then for support, eg. to plan supported housing for him when he decides to move out (never I hope), perhaps helping me get him some independent living skills and more time out in the community (he stays at home mostly). I'm also not sure I can plan his future around college and work alone as I don't know what's available. We went to Connexions but they wouldn't research alternatives for him as long as he says he wants to stay at the college, even though college want rid of him and have asked us to find him an alternative.

I went to a kindof convention recently where parents of special needs kids spoke of individual budgets and the likes and it all went a bit over my head. I'm guessing we won't be entitled to any of that for Dan as we muddle along without any outside help, but that will change when he leaves home and I really don't know what to do to prepare for that.

I would really appreciate any thoughts or experiences you have on older teens and support after CAMHS.

Thanks

Kathy

xxx

 

[Special_talent123]

Hi Katy.

 

I have never been with CAMHS as i fall under the learning disability team, but i have some experiences with some in here that might be a use to u

 

With his chewing problem there is things online that u can get to help with that. The cheaper and great site is 'cheap disability aid' they have loads of sensory stuff on there.

 

I also dont have level 1 and i got learning disability, what about him studying skills for life english he will start at whatever level he is at the do an assessment to see where his level is then gets put with a tutor and then they help him achieve getting towards his english. Also make sure he has the learning support team involved for extra support.

 

I been around from adult placement - living with a carer into supported living, now i am living totally alone with support. Well i have a tenancy support worker to help me with my bills, etc until social services has put in place 'community support team' to help me around the house. Social worker has to send an OT around to see what i can and cannot do around the house.

Edited January 29, 2014 by Special_talent123

[KathyM]

Hi Special_talent123

 

Thank you for the advice, I really appreciate it. I have seen the chewy necklaces and the likes but they all look very "young" for him. I did find a site with the hoody "chubes" on, maybe it's the same one you've mentioned (thanks, I'll take a good look).

 

Dan has Entry Level 3 English, he scraped through it but has hit a barrier now where they're saying he won't achieve Level 1 and if he doesn't he has no other options. They don't feel he is at a level where the learning difficulties courses would be appropriate as he has achieved the Entry 3 and also is better at Maths. I know it has been soul destroying for him to continue slogging away at English when he got the Entry 3 and is now doing Entry 3 work again (put down a class because they said he wouldn't achieve Level 1 - no warning, just moved him back). They are not communicating with me at all and have told CAMHS and Learning Support at the college that he's still working towards Level 1, which is not what they told me in December. They have not given him any extra time or support for his dyslexia, and that's the crux of it. He has had to have a new assessment for it as they believed that his diagnosis of dyslexia at eight had "run out" and "he could well have been cured in between then and now" - I mean, come on!! His English tutor didn't even realise he was dyslexic, and this is where things have got really diabolical there. None of his special needs were passed onto tutors then once they were they started saying they weren't told, maybe it's not true, then completely the opposite to CAMHS - we've been helping him all along, he is working towards Level 1, etc etc. Covering their backs. It's a shambles. Honestly though I think they don't want him to get Level 1 as he'd be able to stay at college then!

 

It sounds like you get great support to live independently - do you find it helpful? I worry that Dan will brush the help off and say he doesn't need it (he has a habit of seeing his issues as somehow implying weakness and therefore doesn't always accept help).

 

I really appreciate your reply, thanks xxx

[Special_talent123]

I am still Entry level 3 english and I am entry level 2 maths. My level got dropped down from working towards level 1 to entry level 3. He needs a better tutor the right teaching method for him to achieve level 1 i know it can be possible some how achieved the grade in ECDL. He should be getting extra support through learning support - they have place for students with dyslexia for someone to scribe, recorder, laptop and for exams extra time or a scribber.

 

I am nearly 24 and i have sensory toys i have a friend who is near my age with chewy tubes too. Never too old for one . Sensory stuff helps me and my friend. You can find things on cheap disability aid site its cheaper than the other special needs sites.

 

Its hard living alone but it has to be done i got not much of a choice. Its especially hard when I am physically ill ... flu like symptoms along with a respiratory infection and have to go out when i am unwell to get food. I locked myself out number of times which means walking 30 mins each way to lettings agency in agony and then drop in at asda on way back for food also got no washing machine so i have to get someone tto do mine when i am poorly usually i go to a launderette. when i found a right house i make sure i have a bigger kitchen to fit one in.

Edited January 29, 2014 by Special_talent123

[KathyM]

Thanks, it's really kind of you to share your experiences with me.

 

On the chews side of things, I think it depends on the individual, but Dan is a 16 year old young man and wouldn't be seen dead with the necklaces that were recommended by other mums of younger kids (they are pretty huge having seen them first hand, my nephew has one and is not keen on being seen with it and he's only 11). I think maybe it's a 'man' thing. I did speak with one of the manufacturers who asked for Dan's recommendations so that was positive, but Dan started off keen then didn't get back to them. I've seen an Australian brand where it's realistic looking dogtags on a proper dogtag chain (as opposed to the big bold tags and cords they use on Chewigems) and that looked marginally less obvious for him. At that age it's all about not letting your friends see differences though isn't it and although he's laughed about wanting the bright blue robot Chewigem, it's not a serious claim! I know he'd be fine with the hoody chubes, he said as much too, it was the big necklaces and bracelets that look a bit childish (or funky young teen girl) - not ideal for a teenage lad. If I can get the chubes that'll cover the chewing off strings and collars, but the sleeves are really a nightmare. He goes through the sleeves and collars of stuff within minutes, particularly hoody sleeves, and given that he won't wear anything else (or coats), he has to have them replaced. I'm a big believer in finding the motivation behind behaviours like that, like his climbing we haven't fixed totally (because college stress makes him more likely to) but it's reduced because we know why he does it now. If I knew why he chewed I could maybe direct it into something a bit more acceptable. Acceptable's not the right word but I can't think of a better one.

 

Dan has been given support by the learning support but the teaching staff themselves turn the support worker away saying he doesn't need one and when it comes to everything but English that's true. They also won't let him have the timeouts on his Section 139a though and when they were asked to make a sensory space for him to unwind near to his class (because they won't allow him to use the college's sensory room as it's too far and takes too long to get there and back) they refused too saying he doesn't look autistic to them. It's one particular tutor but unluckily she's his progression coach. CAMHS are going to deal with her.

 

It sounds like you've made some accomplishments you should be really proud of, especially considering how difficult they have been for you - I hope that comes across in the way it's meant, with totally cool awe not patronising. xxxx

[Special_talent123]

Thanks, it's really kind of you to share your experiences with me.

 

On the chews side of things, I think it depends on the individual, but Dan is a 16 year old young man and wouldn't be seen dead with the necklaces that were recommended by other mums of younger kids (they are pretty huge having seen them first hand, my nephew has one and is not keen on being seen with it and he's only 11). I think maybe it's a 'man' thing. I did speak with one of the manufacturers who asked for Dan's recommendations so that was positive, but Dan started off keen then didn't get back to them. I've seen an Australian brand where it's realistic looking dogtags on a proper dogtag chain (as opposed to the big bold tags and cords they use on Chewigems) and that looked marginally less obvious for him. At that age it's all about not letting your friends see differences though isn't it and although he's laughed about wanting the bright blue robot Chewigem, it's not a serious claim! I know he'd be fine with the hoody chubes, he said as much too, it was the big necklaces and bracelets that look a bit childish (or funky young teen girl) - not ideal for a teenage lad. If I can get the chubes that'll cover the chewing off strings and collars, but the sleeves are really a nightmare. He goes through the sleeves and collars of stuff within minutes, particularly hoody sleeves, and given that he won't wear anything else (or coats), he has to have them replaced. I'm a big believer in finding the motivation behind behaviours like that, like his climbing we haven't fixed totally (because college stress makes him more likely to) but it's reduced because we know why he does it now. If I knew why he chewed I could maybe direct it into something a bit more acceptable. Acceptable's not the right word but I can't think of a better one.

 

Dan has been given support by the learning support but the teaching staff themselves turn the support worker away saying he doesn't need one and when it comes to everything but English that's true. They also won't let him have the timeouts on his Section 139a though and when they were asked to make a sensory space for him to unwind near to his class (because they won't allow him to use the college's sensory room as it's too far and takes too long to get there and back) they refused too saying he doesn't look autistic to them. It's one particular tutor but unluckily she's his progression coach. CAMHS are going to deal with her.

 

It sounds like you've made some accomplishments you should be really proud of, especially considering how difficult they have been for you - I hope that comes across in the way it's meant, with totally cool awe not patronising. xxxx

 

 

 

 

I bite my nails when I am anxious and i havent found anything that helped not even nail varnish but i give anything a try to stop it from happening.

Its like food i can binge on it when anxious overbinge but i found a way of stopping that now. My sensory toys that i got now. I am distracted by them and more distracted i am the less likely i crave food if u understand. Anything can make me anxious but that anxiety can turn into a meltdown like i locked myself out did not even have my headphones as i listen to music but i didnt the sensory toys as soon as got in calmed me down

 

Support at college that is just disgusting. What type of college is it? I never had sensory room at a mainstream college. I never had one at special school but they do now, i could of benefitted at school. If it was me i would look else where to study.

[KathyM]

Well we may not get any choice in that now as Dan has been kicked out today. It's a long story and one I'll post in depth once he has calmed down. They have told him he's going to be formally kicked out, a different higher staff member says it wasn't even important enough to ring me about. Constructive dismissal being their intent is what I am now certain of regardless of what happens. I'll fill you in soon xx

[KathyM]

OK so what happened today. To put this in a slightly wider context, one of Dan's friends has autism too, and together they are too much unless in class where they work well together. This week however, this other lad has badly offended Dan by inviting a lad into their group who has in the past threatened Dan. The lad with autism knows Dan doesn't like him, and I've explained that he can't expect more from this lad than he does from himself (if that makes sense - to give him some leeway). However, the autistic lad has said to him that his new mate won't beat him up as long as he sticks with them. The wider gang are a set of chavs, Dan and the other autistic lad ACT like them when around them, but are not the full part if that makes sense - they're all talk and no trousers and not good at chav politics. I think they're all fairly harmless, and I quite like the autistic lad although he has much worse family issues (loaded parents but left to own devices he has a child and is only just 16). His autism is worse in some areas than Dan's and better in others, as sensible folks would expect.

 

Firstly, Dan messed up. He got back from lunch late (one of his friends told him to meet him at the train station and he couldn't make it back in time - what a surprise, can't say no). He got back to college, got straight to his Maths class, and wasn't allowed in. I half get this, but I also know that teacher is the one that at that meeting rolled her eyes and said Dan isn't autistic, he's a spoiled manipulative brat. She brushed EVERY issue he has off as normal manipulative teenage behaviour. She even told him at his progress review that he should ignore CAMHS and his diagnosis as she knows for sure he doesn't have autism (he doesn't look or act autistic to her, apparently she believes she's a clinical psychologist now). For a progress coach, she has been awful, she told him he should just give up college and go somewhere else, she said much the same to the meeting, implying it was in his best interests but making it obvious that they also didn't need the hassle. So he was already on edge with her, she's obviously told him off for being late (which is totally fair) and this has set him on the defensive.

 

He said he needed to go outside and breathe for a minute, and a staff member told him to get inside, quite bossy. This person was male, they have been asked to wherever possible let a female deal with issues surrounding discipline as he is very anxious around men. Dan went outside with the lad he met, and the other autistic boy, who had been sent out of lesson for messing around and had run up and down the corridor banging on doors as Dan was getting told off for being late. So at this point they grouped up, all giddy (in Dan's case and the other autistic lad's case quite anxious but trying to hide it), all in bother.

 

So they were all outside, bitching, justifying, Dan panicking, and the male teacher came out and shouted at them to get inside or go home, understandably. The boy Dan had met told him to eff off. The more they acted up, the more Dan was keying up up up, on discussion late tonight he said he felt sick and dizzy, shaky etc. However after the man tells them all they're on a (Dan's words) "Section 3", the other boys relented and went inside to apologise after bigging up Dan for refusing to go in for his part of the telling off (confrontation believe it or not is his kryptonite). At this point the man told the lads to wait in his office and ran towards Dan and reached out for him, and Dan saw this as him coming to restrain him (this has happened to him before in secondary school, and despite the college not doing that kind of thing, it's his gut reaction to react out of panic). Dan was very hyped up and extremely anxious by this point and said "Get the eff away from me". The teacher said words to the effect of "Tell me to eff off again and you're out for good". Dan at this point blew up, swore and ran off with one of the lads (another boy who has been kicked off the course but was hiding and had been in on the bitching/bigging up but hidden from teacher).

 

At this point I get a phonecall off Dan, and in the background I can hear this "really good mate" saying "You tell 'em next time to go eff themselves, they're not the boss of you! Is your mam having a go, tell her to eff off too" - all VERY hyper and fast, repeating it, quite high pitched, loud, keyed up for a fight. Dan has ragged, fast breathing, is speaking ten to the dozen and seemingly in a real state. When the lad repeated "Aww man, tell her to eff off", he does exactly that and hangs up on me. Charmed I'm sure! I really expected him not to come home after this. BUT, he did (wheheyyy, massive change there).

 

I rang the college after the phonecall and then again when he got home. I was really annoyed and worried, because yet again they hadn't rung me as promised and Dan sounded to be in a real state. I got through to his course leader, having misdialled her number instead of learning support (they have asked that all contact goes through learning support, this was meant to be so that learning support could ensure good communication but effectively meant course staff stopped passing anything on at all). She immediately went into defensive mode, which again I get, she's human. However some of the things she said were untrue and some were just wrong.

 

Her first point is Dan must be lying about the whole event because there's no such thing as a "Section 3". Now I know that they actually call it a Level 3, but was she seriously going to argue there was no such thing? All I wanted was a clear picture of what had happened as at this point all I'd got was a text saying "I've been kicked out" followed by the eff off call, which didn't go into much detail other than "I was late, wasn't allowed in, got chased by Malcolm and he said I'm out for good cos I've got a Section 3".

 

I tried to explain that Dan doesn't get in this state without something getting him there, and that his abuse is generally a result of anxiety. Actually I should have said always but I was trying to be diplomatic. I said which lad I had heard telling Dan to tell me to eff off, she then said it couldn't possibly be him as he's not a student any more so Dan was lying to me (she has used this before when Dan was turning up late waiting for this lad, and it turned out to be the truth - I have no clue why this lad still turns up at the college but he does, I've seen it with my own eyes, I know his voice as it's very distinctive. I had not said Dan had told me it was him, so she'd accused him of lying regardless. I asked why noone had rang me, she said they're not obliged to. She then went into a diatribe about college expectations as if I was defending his abuse, which I wasn't (this always comes out) and then said "He knows exactly how to behave, he's not an animal so he has no excuse has he?" I was really shocked by this. It got worse.

 

I said I was shocked she couldn't see how his autism could effect his behaviour and she said "Well his best mate has autism, he managed to calm down and come inside to apologise, so if Dan really has autism, he has no excuse there either". It was like talking to a brick wall. She explained that he's not allowed back in tomorrow, then he has to go and apologise to Malcolm and "hear their decision" as he has a "Level 3". She said they're not obliged to keep him there as he has no excuse for getting himself in a state and should "learn to be like everyone else". I tried to explain that he never responds well to what he perceives as a male threat, whether we do or not, and she said it is no excuse, noone should have to make an exception for him, Malcolm's not an ogre and Dan is being offensive by pretending he is scary. She wouldn't hear that Dan doesn't think Malcolm is scary, he thinks any man running up to him as if to grab him is scary but she laughed and said Dan isn't scared or he wouldn't swear and would do as he's told.

 

She totally made out like I was okaying his behaviour and I kept saying over and over, I am not. I just want them to understand what leads to that and they will never, ever, listen. It's pointless trying any more. They showed their true colours by recommending I find him "alternative arrangements" in front of that whole multidisciplinary meeting, even when they said if Dan wants to stay they should support him to. Each time anyone enquires on my behalf what's happening with his achievements or future there, they tell them it doesn't matter as I'll find him somewhere else. But Dan doesn't want to go! And why should he? I agree that he can't carry on alienating people by this rude behaviour but it's like they're going out of their way to make sure he ends up quitting, as despite all their threats they know if they kick him out for a symptom of a disability, they're in the poop. None of the other boys have been threatened with a Section 3 or Level 3 since the man made the threat to get them inside. So they all did as badly as each other but because Dan couldn't face a bloke for a telling off without calming down first, he gets the Level 3??

 

Dan is mortified and wants to go in tomorrow and say sorry and tell Malcolm it was all his fault. He says he's not mad at Malcolm and I'm not either, but I'm foaming with the course leader for not passing on the information to staff on how he's meant to be dealt with BY LAW in his Section 139a. They won't have him back. They say they want him there on Wednesday at 10am alone so he can face Malcolm alone for the verdict. I have said no way, I go with, but Dan is saying he now wants to go as long as it isn't with the other lads present, which I'm pretty certain they will be. He's seen today that he has messed up badly by being late, then got caught in the hype with the other lads, yet again. He wants to ask not to be with them and to be moved class wise, which is likely from what the course leader said (although the cowbag of a progression coach promised that last September, saying they were a bad influence on him and then again in December at the meeting, so I take it all with a pinch of salt).

 

Apparently he will not be kicked out permanently, for which Dan is overly grateful. Really, they're pretending to be soft when really they know if they keep at it he'll quit. Personally I would've fought tooth and nail to keep him there as long as he wants to go, but wish he didn't want to go there any more. Gutted as he's beating his head against a brick wall and they're all just so horrible with a couple of exceptions. I wish I could blame it on ignorance but the fact is they know exactly how he ticks and CHOOSE to let him get into a state by chasing him all over, sending blokes, shouting (severe noise sensitivity) and posturing, instead of calling the other lads away and letting Dan calm down and come to his senses.

 

I will be putting it in writing that they're still not giving him the support outlined in his Section 139a and that will be going to Connexions and the LEA too. I've had it. CAMHS warned me they have NEVER had success sorting out this small section of the college for other children, they don't cooperate or communicate, it's not just Dan. He's making it easy for them to use him as an excuse, but this is entirely on purpose, I didn't take the hint at the meeting, so they will make it happen.

Edited February 4, 2014 by KathyM

[Special_talent123]

Well we may not get any choice in that now as Dan has been kicked out today. It's a long story and one I'll post in depth once he has calmed down. They have told him he's going to be formally kicked out, a different higher staff member says it wasn't even important enough to ring me about. Constructive dismissal being their intent is what I am now certain of regardless of what happens. I'll fill you in soon xx

 

they cant kick him out without it in writing

[KathyM]

I also wanted to say that Dan came home pretty quickly. He was in a terrible state, rocking, twitching his face, and said "I'm done Mum, I can't do this any more. My life has been £$%$ and I'm never doing education again. I try and try but it's worth £$$% all, I'm never going back". He then spent 5 hours in foetal position on his bed, unresponsive, rocking.

 

He did come around very late tonight and told me all of the above, and says he still wants to go back and finish it. I'm gutted for him. Everyone knows that place is toxic but he sees it as going into battle every day and like it says in his assessment, he can't EVER lose. He doesn't see that in the bigger picture he's hurting himself being there, and it's not them winning if he chooses to be happy elsewhere.

[Special_talent123]

OK so what happened today. To put this in a slightly wider context, one of Dan's friends has autism too, and together they are too much unless in class where they work well together. This week however, this other lad has badly offended Dan by inviting a lad into their group who has in the past threatened Dan. The lad with autism knows Dan doesn't like him, and I've explained that he can't expect more from this lad than he does from himself (if that makes sense - to give him some leeway). However, the autistic lad has said to him that his new mate won't beat him up as long as he sticks with them. The wider gang are a set of chavs, Dan and the other autistic lad ACT like them when around them, but are not the full part if that makes sense - they're all talk and no trousers and not good at chav politics. I think they're all fairly harmless, and I quite like the autistic lad although he has much worse family issues (loaded parents but left to own devices he has a child and is only just 16). His autism is worse in some areas than Dan's and better in others, as sensible folks would expect.

 

Firstly, Dan messed up. He got back from lunch late (one of his friends told him to meet him at the train station and he couldn't make it back in time - what a surprise, can't say no). He got back to college, got straight to his Maths class, and wasn't allowed in. I half get this, but I also know that teacher is the one that at that meeting rolled her eyes and said Dan isn't autistic, he's a spoiled manipulative brat. She brushed EVERY issue he has off as normal manipulative teenage behaviour. She even told him at his progress review that he should ignore CAMHS and his diagnosis as she knows for sure he doesn't have autism (he doesn't look or act autistic to her, apparently she believes she's a clinical psychologist now). For a progress coach, she has been awful, she told him he should just give up college and go somewhere else, she said much the same to the meeting, implying it was in his best interests but making it obvious that they also didn't need the hassle. So he was already on edge with her, she's obviously told him off for being late (which is totally fair) and this has set him on the defensive.

 

He said he needed to go outside and breathe for a minute, and a staff member told him to get inside, quite bossy. This person was male, they have been asked to wherever possible let a female deal with issues surrounding discipline as he is very anxious around men. Dan went outside with the lad he met, and the other autistic boy, who had been sent out of lesson for messing around and had run up and down the corridor banging on doors as Dan was getting told off for being late. So at this point they grouped up, all giddy (in Dan's case and the other autistic lad's case quite anxious but trying to hide it), all in bother.

 

So they were all outside, bitching, justifying, Dan panicking, and the male teacher came out and shouted at them to get inside or go home, understandably. The boy Dan had met told him to eff off. The more they acted up, the more Dan was keying up up up, on discussion late tonight he said he felt sick and dizzy, shaky etc. However after the man tells them all they're on a (Dan's words) "Section 3", the other boys relented and went inside to apologise after bigging up Dan for refusing to go in for his part of the telling off (confrontation believe it or not is his kryptonite). At this point the man told the lads to wait in his office and ran towards Dan and reached out for him, and Dan saw this as him coming to restrain him (this has happened to him before in secondary school, and despite the college not doing that kind of thing, it's his gut reaction to react out of panic). Dan was very hyped up and extremely anxious by this point and said "Get the eff away from me". The teacher said words to the effect of "Tell me to eff off again and you're out for good". Dan at this point blew up, swore and ran off with one of the lads (another boy who has been kicked off the course but was hiding and had been in on the bitching/bigging up but hidden from teacher).

 

At this point I get a phonecall off Dan, and in the background I can hear this "really good mate" saying "You tell 'em next time to go eff themselves, they're not the boss of you! Is your mam having a go, tell her to eff off too" - all VERY hyper and fast, repeating it, quite high pitched, loud, keyed up for a fight. Dan has ragged, fast breathing, is speaking ten to the dozen and seemingly in a real state. When the lad repeated "Aww man, tell her to eff off", he does exactly that and hangs up on me. Charmed I'm sure! I really expected him not to come home after this. BUT, he did (wheheyyy, massive change there).

 

I rang the college after the phonecall and then again when he got home. I was really annoyed and worried, because yet again they hadn't rung me as promised and Dan sounded to be in a real state. I got through to his course leader, having misdialled her number instead of learning support (they have asked that all contact goes through learning support, this was meant to be so that learning support could ensure good communication but effectively meant course staff stopped passing anything on at all). She immediately went into defensive mode, which again I get, she's human. However some of the things she said were untrue and some were just wrong.

 

Her first point is Dan must be lying about the whole event because there's no such thing as a "Section 3". Now I know that they actually call it a Level 3, but was she seriously going to argue there was no such thing? All I wanted was a clear picture of what had happened as at this point all I'd got was a text saying "I've been kicked out" followed by the eff off call, which didn't go into much detail other than "I was late, wasn't allowed in, got chased by Malcolm and he said I'm out for good cos I've got a Section 3".

 

I tried to explain that Dan doesn't get in this state without something getting him there, and that his abuse is generally a result of anxiety. Actually I should have said always but I was trying to be diplomatic. I said which lad I had heard telling Dan to tell me to eff off, she then said it couldn't possibly be him as he's not a student any more so Dan was lying to me (she has used this before when Dan was turning up late waiting for this lad, and it turned out to be the truth - I have no clue why this lad still turns up at the college but he does, I've seen it with my own eyes, I know his voice as it's very distinctive. I had not said Dan had told me it was him, so she'd accused him of lying regardless. I asked why noone had rang me, she said they're not obliged to. She then went into a diatribe about college expectations as if I was defending his abuse, which I wasn't (this always comes out) and then said "He knows exactly how to behave, he's not an animal so he has no excuse has he?" I was really shocked by this. It got worse.

 

I said I was shocked she couldn't see how his autism could effect his behaviour and she said "Well his best mate has autism, he managed to calm down and come inside to apologise, so if Dan really has autism, he has no excuse there either". It was like talking to a brick wall. She explained that he's not allowed back in tomorrow, then he has to go and apologise to Malcolm and "hear their decision" as he has a "Level 3". She said they're not obliged to keep him there as he has no excuse for getting himself in a state and should "learn to be like everyone else". I tried to explain that he never responds well to what he perceives as a male threat, whether we do or not, and she said it is no excuse, noone should have to make an exception for him, Malcolm's not an ogre and Dan is being offensive by pretending he is scary. She wouldn't hear that Dan doesn't think Malcolm is scary, he thinks any man running up to him as if to grab him is scary but she laughed and said Dan isn't scared or he wouldn't swear and would do as he's told.

 

She totally made out like I was okaying his behaviour and I kept saying over and over, I am not. I just want them to understand what leads to that and they will never, ever, listen. It's pointless trying any more. They showed their true colours by recommending I find him "alternative arrangements" in front of that whole multidisciplinary meeting, even when they said if Dan wants to stay they should support him to. Each time anyone enquires on my behalf what's happening with his achievements or future there, they tell them it doesn't matter as I'll find him somewhere else. But Dan doesn't want to go! And why should he? I agree that he can't carry on alienating people by this rude behaviour but it's like they're going out of their way to make sure he ends up quitting, as despite all their threats they know if they kick him out for a symptom of a disability, they're in the poop. None of the other boys have been threatened with a Section 3 or Level 3 since the man made the threat to get them inside. So they all did as badly as each other but because Dan couldn't face a bloke for a telling off without calming down first, he gets the Level 3??

 

Dan is mortified and wants to go in tomorrow and say sorry and tell Malcolm it was all his fault. He says he's not mad at Malcolm and I'm not either, but I'm foaming with the course leader for not passing on the information to staff on how he's meant to be dealt with BY LAW in his Section 139a. They won't have him back. They say they want him there on Wednesday at 10am alone so he can face Malcolm alone for the verdict. I have said no way, I go with, but Dan is saying he now wants to go as long as it isn't with the other lads present, which I'm pretty certain they will be. He's seen today that he has messed up badly by being late, then got caught in the hype with the other lads, yet again. He wants to ask not to be with them and to be moved class wise, which is likely from what the course leader said (although the cowbag of a progression coach promised that last September, saying they were a bad influence on him and then again in December at the meeting, so I take it all with a pinch of salt).

 

Apparently he will not be kicked out permanently, for which Dan is overly grateful. Really, they're pretending to be soft when really they know if they keep at it he'll quit. Personally I would've fought tooth and nail to keep him there as long as he wants to go, but wish he didn't want to go there any more. Gutted as he's beating his head against a brick wall and they're all just so horrible with a couple of exceptions. I wish I could blame it on ignorance but the fact is they know exactly how he ticks and CHOOSE to let him get into a state by chasing him all over, sending blokes, shouting (severe noise sensitivity) and posturing, instead of calling the other lads away and letting Dan calm down and come to his senses.

 

I will be putting it in writing that they're still not giving him the support outlined in his Section 139a and that will be going to Connexions and the LEA too. I've had it. CAMHS warned me they have NEVER had success sorting out this small section of the college for other children, they don't cooperate or communicate, it's not just Dan. He's making it easy for them to use him as an excuse, but this is entirely on purpose, I didn't take the hint at the meeting, so they will make it happen.

 

Right this is not right. first of all dan doesnt understand he just go and do what someone says he is vulnerable. 2 the teachers arent a professional to make a diagnosis and 3 if i was u to complain to the 'head of department' let learner support know as well and if not happy with head of department take it to the person high above her my mum had done that on me with a situation.

[KathyM]

 

they cant kick him out without it in writing

 

They can't kick him out for behaviour he can't help, and it's not expellable behaviour to be late to a class. They know they can't kick him out so they are pushing and pushing to make him quit. The lad who told him to tell me to eff off is the same one with the flat, I really didn't think Dan would come home at all today. The social aspect of college is challenging enough for him, with these lads going through the normal teenage bull of making and falling out with mates, being twofaced and getting away with it, expecting others to be able to do the same. On top of that he is getting no support, he is being wound up deliberately, not allowed the time outs or headphones, not allowed to use the sensory room. They pretend they don't know what to do when they've had the guidelines since May. It's all a very badly hidden constructive dismissal.

[Special_talent123]

As above your conversation i wrote this if u didnt see it

 

Right this is not right. first of all dan doesnt understand he just go and do what someone says he is vulnerable. 2 the teachers arent a professional to make a diagnosis and 3 if i was u to complain to the 'head of department' let learner support know as well and if not happy with head of department take it to the person high above her my mum had done that on me with a situation.

[KathyM]

Thanks, I really appreciate you taking the time to reply again, you've been really kind. Is it always this quiet on here now? It seems like you and me mostly recently but I've only looked at a few threads lol.

 

The manager of that "school" of the college is the man that chased Dan, the course leader is the woman I spoke to today (she is also head of the 14-16 provision). I wanted to go with Dan to the meeting on Wednesday (and told them that) but since then Dan has said he wants to go alone as long as noone else is there. I want to give the manager the chance to understand him though and Dan won't share that, he's getting there but is embarrassed and prefers me to tell the story. I will put today's goings on into writing along with my long term concerns and send it to both, as well as Connexions who are in charge of his Section 139a, the learning support lady and CAMHS.

 

Thanks again for your help xx

[Special_talent123]

so is it a school or a college. im not sure what else can suggest other than getting a advocate or something

 

no its not usually be this quite

[KathyM]

It's a college. The college is made up of sections they call schools, like the School of English and Maths that Dan's course comes under. Like unis that have different 'schools' for different subject areas. xx

Edited February 4, 2014 by KathyM

[cathcart3303]

Just wanted to say I think the attitude of the college staff stinks. My son has a social worker who has the same mind set. They see all different behaviour as wilful. Could you get the college principal to hold a meeting with all the teachers, you and your son to establish what needs to happen in a given scenario. eg if he is late. Or is this in his section 139a? I personally cannot fathom why they are not supporting your son to access an education by working with him. I would put in writing that your son has a disability and you expect reasonable adjustments to be made so he can access education and send to principal.

[KathyM]

Thanks cathcart3303

 

We've had that meeting. In December, we sat down with the course leader, his progression coach, Connexions (who are in charge of the Section 139a), Learning Support from the college, and the head psych and OTs from CAMHS. Learning Support are and always have been amazing, but course staff do not communicate with them or do as they ask. Connexions warned them that not using his Section 139a was illegal and they were investigating. OT and the psych explained his issues and needs. The progression coach rolled her eyes and argued against every single bit. The course leader relied on the progression coach as her star witness so to speak, she's not there (she's office based in a different building) so she always backs them. They eventually agreed to do everything, and just haven't done what they promised.

 

Now with regards to yesterday, I do not blame the male member of staff involved at all, not in the slightest. How can he be expected to know Dan's needs when a. he's not one of his teaching staff, and b. even the teaching staff are saying the progression coach and course leader have not told them what's going on. Dan has had at least 5 different English teachers this term alone, it's ridiculous. The head of English that is responsible for his progress in English didn't even know he was dyslexic when he was diagnosed at eight and the course leader was given that information when he started 2 years ago. Course leader's excuse is his diagnosis is out of date (apparently they need a new one every two years). Well given that she was given the information in September '12, why did she wait til this month to say they haven't given him ANY dyslexia support (when throughout that two years she's said to me he was getting it on numerous occasions)? And if the college expect a new diagnosis every two years, why was it not done on admission? And if they haven't supported him with his dyslexia since he started, when are they going to put autism support in place - two years from now?

 

For them to say he doesn't have autism because he either doesn't look autistic (progression coach) or doesn't act identically to their only other autistic student (course leader), is beyond a disgrace. I'm not arguing that the male member of staff is responsible for Dan's outburst, I'm really not, because I don't believe that. What I am saying is if they genuinely want to have him succeed, then they're going to have to start at least trying to see things from Dan's perspective and not assuming he is seeing things in the same way as them. They always put him up against a "normal" benchmark, they say if they can see X then he can, and they're like a brick wall. I don't think it's unrealistic for the staff who interact with him to be expected to attempt to learn what sets Dan up for success or failure behaviour wise. And their refusal to even try is undoing all our hard work. It's disrespectful. And they should be taking responsibility for his anxiety levels in college considering the reason they're so high is because none of the measures recommended are being implemented. I don't think that's me excusing bad behaviour? Maybe I'm wrong?

[cathcart3303]

I totally agree that this behaviour is a direct result of lack of correct intervention stemming from time keeping skills associated to his disability. It's like banging your head against a brick wall. I would still put it in writing to principal as they should have an overall idea of what is going on and sort it out. If these people have been told and are still failing to make adjustments then they should be disciplined.

[KathyM]

Thanks, yes I've made a formal complaint to the head of the School of English and Maths at the college (who oversee the course). As I suspected, none of the course staff, leader included, even let his Learning Support contact know, AGAIN. So their boss has also made a formal complaint about them too, today, meaning I should expect a response quicker.

 

He went in today to that "telling off" he had to go to, he insisted on going alone, and just got told he has no excuse for his behaviour. No disciplinary, but I expected that after I complained and reminded them of the law. Dan is fine now, or so he says. Quiet but not shut off.

 

Connexions rang last night and said they were foaming about it too, as they've had no response to their request to the college for their input on his new Section 139a or how they've been implementing things up to now. She offered to come to the meeting but felt firstly Dan had refused my help so wouldn't be likely to accept hers, and that she is biased in Dan's favour lol. I think most rational people are!

[KathyM]

Well it has all got a bit interesting.

As you know, I put in a formal complaint by email (given the urgency) addressed to the course leader but also CC'ed to her boss, the head of the School of English and Maths and our Learning Support contact who's on the autism team there on Tuesday. I have not heard back from any course-specific staff. I did make it clear that it would not go down well if we heard he was formally disciplined for issues outside of his control when he came back into college yesterday (for the meeting with the manager of the building, the man involved). Like I said in my last post, I did receive a swift reply by phone from the autism team contact, who said her boss had read the email with her and also was making an email complaint to back ours. So I was quite grateful that they'd responded so quickly and it shows the message got through.

Another bit of proof that the email got through was the response yesterday morning in their behaviour. Dan went (alone against my guidance) to the meeting and as he went in, the course leader and her boss came out. Dan received no formal discipline, but was told he had to change his behaviour.

He came home in quite a hyped up, overload state. He was very relieved the meeting was done and he'd been allowed back in class, but clearly that relief was meaning all that pent up anxiety was coming out. He'd also had a runin with the other autistic boy involved, who told Dan and the others he has cancer, which has turned out probably not to be the case. More drama! It's hard because I sympathise a lot with his social skills perhaps leading to a fake claim, or perhaps a misunderstanding over a genuine health concern, and personally I feel although they are probably right to be suspicious, it's none of their damn business. Maybe he wants people to like him, or some attention, but sadly Dan didn't sympathise at all. He's very very black and white in those respects and didn't want to speak to him, and I understand his logic too - it's hard explaining the rights and wrongs of both sides! So there was added anxiety there because he didn't want to fight with him either but couldn't face him while he felt he was doing something wrong.

When he got home it was clear he was offloading more energy/stress than normal, even though he wasn't in a particularly bad mood. He was rocking from foot to foot (which he does when wound up, hyper, arguing, stressed) and his face was twitching again. He also does something which I feel might be a complex motor tic (maybe others could say what they think on this if they read it?). It's a set of movements where he puts his hand, bent at the fingers into a right angle, and brushes his hair off his face, or the skin of his face, as he talks. He tends to do this mostly in conversation but I've seen him doing it when watching telly too. He is not aware of the extent to which he has done it when I mention it (sometimes isn't aware at all) and I've learned when not to mention it at all as he's quite sensitive understandably about it. It's as if he's awkwardly brushing his hair off his face over and over and over, but not actually often moving the hair at all, just petting it almost but with the thumb side of his bent hand. It didn't strike me as obviously when his hair was long, but even when it was short he still did it. He sometimes adds in a few touches to the rest of his hair, which is strange to me as he hates his hair being touched by anything other than a hoody. His hair is long again now because he can't stand having it cut! It's always his right hand, and he does it excessively, sometimes brushing the hand over his mouth and under his nose too when talking. I can't for the life of me make my mind up whether it's a tic or sensory seeking? It doesn't seem very fluid or natural? He does use his hands to sensory seek though according to the OT report - knuckle cracking, nail biting, tapping the table and his legs.

Talking of sensory seeking though, he was doing a lot of that last night too, chewing, rocking, etc. Is this what gets called "stimming"? Is that a word for sensory seeking? Even with his melatonin he didn't go to sleep til after 4am. I'm knackered lol! Obviously because of this and because I have to take (and sleep off) strong meds too, we both accidentally slept in - my husband was out at the crack of dawn and my older son normally checks I've woken up as I sleep through alarms if my pain has been bad, and he had slept in too! That said, Dan was awake in plenty of time to go, but reluctant to get up and actually go. saying he'd never make it because he hadn't washed his hair in time (he has to do this before he can leave the house, sometimes twice). He got out of the door at 10:30am and in my book college were very lenient in letting that be an authorised absence. I don't know how to get through to him that if he wants to remain on this course like *HE* insists on, he has to be on time every day, particularly if he wants to progress as that may come down to tutor discretion on the sports course he wants to do (as he might not achieve the right grade in English to get on without leniency from the sports tutor).

Today he came home much quieter, in a more calm mood, without any reports of drama. He says the man that was involved has said to go to him when he needs time out, but not sure that's in his best interests as he really needs to go somewhere where he can be alone and not stimulated more. We'll see. We watched a video together that I'd watched earlier, that had been posted on Facebook by an autism group locally - it was a simulation of sensory overload. I'd watched it with the volume at the advised level earlier in the day when he was out, to get the full effect, but obviously didn't want to do that to Dan when he's so sensitive to noise. He said what I feared, that it wasn't much different to how he feels at college when he's not in the best spirits (eg. tired or more anxious than usual). My automatic assumption was that the video might be worse than his problems, which he said in noise it was but only slightly (perhaps because I'd lowered the volume). The biggest different is that it's effecting his sight too, and more so than the video (and remind me someone, that's a more in depth thread of it's own tomorrow as there's more to that). This is the link to the video we watched: http://blog.theautismsite.com/sensory-overload-simulation/#ohJbWW0MRxRwrxRj.01 EDIT: Came back to strenuate, DO NOT WATCH without being aware that it is incredibly loud and could induce anxiety in those with sensory difficulties, I've added it more for informative purposes for those who are perhaps parents or carers than those with sensory issues themselves. If you do decide to watch to see if you feel it's accurate to you, I would not follow the advice to turn up your computer and would actually turn it down a little below your usual level so you can get a vibe for it rather than the "full whack".

Also I finally got a reply from my Monday call to CAMHS (?!) - yet again the receptionist hadn't passed on the messages (and I am inclined to agree as Dan's OT is normally very quick to respond, even if I call literally at closing time, she'll ring back in the evening). This is the good news bit coming up.

She said that one of her team (OTs) has just got back from some really intense sensory training in brand new methods of assessment. Now, did I tell you they'd said CAMHS here don't normally do sensory profiling any more and the psychologist told me I'd have to research SPD myself and treat him myself without a diagnosis because of this? Well all hail the new training, as the OT on arriving back asked for one case to try the new methods (it won't get rolled out for some time) and guess who got put forward by everyone? Yup, Dan. Now I know some might think it's a bad thing to be a guinea pig for these new methods but if they're brand new, and the choice is the newest methods or no methods, then I'll go with the first option for him.

They're also going into college around the 25th to "educate" them (the same day we will all be there to feed back the reports to them). I'm relishing that because the course leader claims every teacher there is extensively trained in autism to the highest degree and doesn't need to hear from a lowly parent what it's like for her son. *Ahem* bull!

Then I (and hopefully my hubby if he can make it around his support at the local blind charity) will be getting some one to one training on Dan's sensory needs, and anything else I want to ask them to help me plan in his care. AND alongside that Dan's getting what I'd already shared with you - one to one in college (as much to make sure the college behave as to help Dan with his social skills and emotional vocabulary) for 6 weeks, followed by a 6 week "Positive Transformations" course (NLP and hypnosis) at CAMHS. I can't even begin to say how much his care has turned around there since the old care coordinator got taken off casework and put back in an office. The OT who is Dan's care coordinator now, is just lovely, really really lovely, as is the member of the team she manages who did Dan's assessments. They really have pushed the boat out. I know it's still early days but the old one dragged her feet, lost files, never contacted us, and generally kept us waiting for 6 months messing the job up, and after a month long "no man's land" period of noone coordinating, the new one got his diagnosis sorted from a really in depth OT assessment and pushing for psych appointments within ONE month. I know it would've taken longer without the ADOS having been done way back at the start, but the mismanagement since meant that was revisited and reassessed by the head psych on the new coordinator's pushing. I now pray to her as a God. XD

Sorry for War and Peace again and sorry we've strayed so much from the title of the thread. Thank you all again. xxx

Edited February 7, 2014 by KathyM

[Special_talent123]

 

Well it has all got a bit interesting.

As you know, I put in a formal complaint by email (given the urgency) addressed to the course leader but also CC'ed to her boss, the head of the School of English and Maths and our Learning Support contact who's on the autism team there on Tuesday. I have not heard back from any course-specific staff. I did make it clear that it would not go down well if we heard he was formally disciplined for issues outside of his control when he came back into college yesterday (for the meeting with the manager of the building, the man involved). Like I said in my last post, I did receive a swift reply by phone from the autism team contact, who said her boss had read the email with her and also was making an email complaint to back ours. So I was quite grateful that they'd responded so quickly and it shows the message got through.

Another bit of proof that the email got through was the response yesterday morning in their behaviour. Dan went (alone against my guidance) to the meeting and as he went in, the course leader and her boss came out. Dan received no formal discipline, but was told he had to change his behaviour.

He came home in quite a hyped up, overload state. He was very relieved the meeting was done and he'd been allowed back in class, but clearly that relief was meaning all that pent up anxiety was coming out. He'd also had a runin with the other autistic boy involved, who told Dan and the others he has cancer, which has turned out probably not to be the case. More drama! It's hard because I sympathise a lot with his social skills perhaps leading to a fake claim, or perhaps a misunderstanding over a genuine health concern, and personally I feel although they are probably right to be suspicious, it's none of their damn business. Maybe he wants people to like him, or some attention, but sadly Dan didn't sympathise at all. He's very very black and white in those respects and didn't want to speak to him, and I understand his logic too - it's hard explaining the rights and wrongs of both sides! So there was added anxiety there because he didn't want to fight with him either but couldn't face him while he felt he was doing something wrong.

When he got home it was clear he was offloading more energy/stress than normal, even though he wasn't in a particularly bad mood. He was rocking from foot to foot (which he does when wound up, hyper, arguing, stressed) and his face was twitching again. He also does something which I feel might be a complex motor tic (maybe others could say what they think on this if they read it?). It's a set of movements where he puts his hand, bent at the fingers into a right angle, and brushes his hair off his face, or the skin of his face, as he talks. He tends to do this mostly in conversation but I've seen him doing it when watching telly too. He is not aware of the extent to which he has done it when I mention it (sometimes isn't aware at all) and I've learned when not to mention it at all as he's quite sensitive understandably about it. It's as if he's awkwardly brushing his hair off his face over and over and over, but not actually often moving the hair at all, just petting it almost but with the thumb side of his bent hand. It didn't strike me as obviously when his hair was long, but even when it was short he still did it. He sometimes adds in a few touches to the rest of his hair, which is strange to me as he hates his hair being touched by anything other than a hoody. His hair is long again now because he can't stand having it cut! It's always his right hand, and he does it excessively, sometimes brushing the hand over his mouth and under his nose too when talking. I can't for the life of me make my mind up whether it's a tic or sensory seeking? It doesn't seem very fluid or natural? He does use his hands to sensory seek though according to the OT report - knuckle cracking, nail biting, tapping the table and his legs.

Talking of sensory seeking though, he was doing a lot of that last night too, chewing, rocking, etc. Is this what gets called "stimming"? Is that a word for sensory seeking? Even with his melatonin he didn't go to sleep til after 4am. I'm knackered lol! Obviously because of this and because I have to take (and sleep off) strong meds too, we both accidentally slept in - my husband was out at the crack of dawn and my older son normally checks I've woken up as I sleep through alarms if my pain has been bad, and he had slept in too! That said, Dan was awake in plenty of time to go, but reluctant to get up and actually go. saying he'd never make it because he hadn't washed his hair in time (he has to do this before he can leave the house, sometimes twice). He got out of the door at 10:30am and in my book college were very lenient in letting that be an authorised absence. I don't know how to get through to him that if he wants to remain on this course like *HE* insists on, he has to be on time every day, particularly if he wants to progress as that may come down to tutor discretion on the sports course he wants to do (as he might not achieve the right grade in English to get on without leniency from the sports tutor).

Today he came home much quieter, in a more calm mood, without any reports of drama. He says the man that was involved has said to go to him when he needs time out, but not sure that's in his best interests as he really needs to go somewhere where he can be alone and not stimulated more. We'll see. We watched a video together that I'd watched earlier, that had been posted on Facebook by an autism group locally - it was a simulation of sensory overload. I'd watched it with the volume at the advised level earlier in the day when he was out, to get the full effect, but obviously didn't want to do that to Dan when he's so sensitive to noise. He said what I feared, that it wasn't much different to how he feels at college when he's not in the best spirits (eg. tired or more anxious than usual). My automatic assumption was that the video might be worse than his problems, which he said in noise it was but only slightly (perhaps because I'd lowered the volume). The biggest different is that it's effecting his sight too, and more so than the video (and remind me someone, that's a more in depth thread of it's own tomorrow as there's more to that). This is the link to the video we watched: http://blog.theautismsite.com/sensory-overload-simulation/#ohJbWW0MRxRwrxRj.01 EDIT: Came back to strenuate, DO NOT WATCH without being aware that it is incredibly loud and could induce anxiety in those with sensory difficulties, I've added it more for informative purposes for those who are perhaps parents or carers than those with sensory issues themselves. If you do decide to watch to see if you feel it's accurate to you, I would not follow the advice to turn up your computer and would actually turn it down a little below your usual level so you can get a vibe for it rather than the "full whack".

Also I finally got a reply from my Monday call to CAMHS (?!) - yet again the receptionist hadn't passed on the messages (and I am inclined to agree as Dan's OT is normally very quick to respond, even if I call literally at closing time, she'll ring back in the evening). This is the good news bit coming up.

She said that one of her team (OTs) has just got back from some really intense sensory training in brand new methods of assessment. Now, did I tell you they'd said CAMHS here don't normally do sensory profiling any more and the psychologist told me I'd have to research SPD myself and treat him myself without a diagnosis because of this? Well all hail the new training, as the OT on arriving back asked for one case to try the new methods (it won't get rolled out for some time) and guess who got put forward by everyone? Yup, Dan. Now I know some might think it's a bad thing to be a guinea pig for these new methods but if they're brand new, and the choice is the newest methods or no methods, then I'll go with the first option for him.

They're also going into college around the 25th to "educate" them (the same day we will all be there to feed back the reports to them). I'm relishing that because the course leader claims every teacher there is extensively trained in autism to the highest degree and doesn't need to hear from a lowly parent what it's like for her son. *Ahem* bull!

Then I (and hopefully my hubby if he can make it around his support at the local blind charity) will be getting some one to one training on Dan's sensory needs, and anything else I want to ask them to help me plan in his care. AND alongside that Dan's getting what I'd already shared with you - one to one in college (as much to make sure the college behave as to help Dan with his social skills and emotional vocabulary) for 6 weeks, followed by a 6 week "Positive Transformations" course (NLP and hypnosis) at CAMHS. I can't even begin to say how much his care has turned around there since the old care coordinator got taken off casework and put back in an office. The OT who is Dan's care coordinator now, is just lovely, really really lovely, as is the member of the team she manages who did Dan's assessments. They really have pushed the boat out. I know it's still early days but the old one dragged her feet, lost files, never contacted us, and generally kept us waiting for 6 months messing the job up, and after a month long "no man's land" period of noone coordinating, the new one got his diagnosis sorted from a really in depth OT assessment and pushing for psych appointments within ONE month. I know it would've taken longer without the ADOS having been done way back at the start, but the mismanagement since meant that was revisited and reassessed by the head psych on the new coordinator's pushing. I now pray to her as a God. XD

Sorry for War and Peace again and sorry we've strayed so much from the title of the thread. Thank you all again. xxx

 

 

Sorry he is having a bad day. Yes thats a tic. I sometimes get a tic or even a stutter when under extreme stress. Yes he can calm himself by doing stimming which i do but i turn to my toys. What helps sensory issues is a sensory room. i use my bedroom as one to calm dowb

[KathyM]

Thanks - what do I do about tics then? He does it most of the time, it just gets much more pronounced when he's stressed.

 

We're in the process of turning his bedroom into a sensory calming room. It's more difficult for teens as a lot of the sensory stuff is quite babyish.

[Special_talent123]

http://www.nhs.uk/conditions/tics/Pages/Introduction.aspx

[smileyK]

I personally found after CAMHS can get bit lost and confused about who is responsible for your care needs ,plan next where to do I go, what do I do next can all be overwhelming and generally frustrating as services just expect you to know ,understand the general steps next which you don't so middle gap in between where do fit into child services anymore or teens services so feel torn between tug of war can be quite draining experience /situation to be involved in ,well was the case for me anyways with having so many other emotional issues to try manage also just added to bit more!

 

sometimes can be quite isolating in itself when you feel don't 'fit in' to society anyway this just compounds, reinforces fears ,worries of abandonment which quite real in our world of let downs and broken promises! I felt like post diagnosis CAMHS didn't really know what to do next with me they handed me and my mum leaflets on ASD general information on condition I ended up doing my own personal research by reading books from library!! just makes worry become anxious even more about who going to look after you! be there when crisis arises I can up with most suggestions was eventually ,finally referred over to Adult Mental Health service but felt negatively judged ,harshly treated so discharged myself as making me feel 'worse' by attending, now back under their services!

 

XKLX