After CAMHS - what's next?

Thanks!  Well it has all got a bit interesting.  

I put in a formal complaint by email (given the urgency) addressed to the course leader but 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 and 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).  I did receive a near-immediate 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, as noone has contact the autism team once, not in response to a meltdown/running off, not in response to their requests for information or updates.  Apparently the boss was also fuming about the language used.  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 the next 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 not to be the case.  More drama!  It's hard because I sympathise a lot with his mistake in claiming that, clearly he wants people to like him, but sadly Dan doesn't sympathise at all because he's black and white in those respects and didn't want to speak to him.  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 than normal.  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 is not aware he has done it when I mention it (and I've learned when not to mention it at all).  It's as if he's awkwardly brushing his hair off his face, and it didn't strike me as obviously when his hair was long, but even when it was short he still did it.  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 it over his mouth too when talking.  I can't for the life of me make my mind up whether it's a tic or sensory seeking.

Talking of sensory seeking though, he was doing a lot of that last night too, chewing, rocking, etc.  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.  That said, Dan was awake in plenty of time to go, but reluctant to get up and actually go.  He got in 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.  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 a few of you 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

Thanks!  Well it has all got a bit interesting.  

I put in a formal complaint by email (given the urgency) addressed to the course leader but 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 and 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).  I did receive a near-immediate 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, as noone has contact the autism team once, not in response to a meltdown/running off, not in response to their requests for information or updates.  Apparently the boss was also fuming about the language used.  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 the next 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 not to be the case.  More drama!  It's hard because I sympathise a lot with his mistake in claiming that, clearly he wants people to like him, but sadly Dan doesn't sympathise at all because he's black and white in those respects and didn't want to speak to him.  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 than normal.  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 is not aware he has done it when I mention it (and I've learned when not to mention it at all).  It's as if he's awkwardly brushing his hair off his face, and it didn't strike me as obviously when his hair was long, but even when it was short he still did it.  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 it over his mouth too when talking.  I can't for the life of me make my mind up whether it's a tic or sensory seeking.

Talking of sensory seeking though, he was doing a lot of that last night too, chewing, rocking, etc.  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.  That said, Dan was awake in plenty of time to go, but reluctant to get up and actually go.  He got in 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.  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 a few of you 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