Tics, anxiety etc

[KathyM]

Hi everyone

 

I won't give a full history on Dan as it's massive and well laid out in my old thread/s, so the basics are that Dan was diagnosed in December at the age of 16 with autism and sensory issues and severe associated anxiety. He also has quite bad dyslexia and a recent OT assessment has picked up on some word processing issues along with motor planning/coordination and bilateral integration issues. Last week he had a big sensory assessment, a brand new way of doing it, he was the guinea pig for the local CAMHS.

 

Dan used to have facial tics (from primary school age), he would scrunch his face and blink. We were always told not to worry about them, they'd go away. They did, at around the age of about 10. These were definitely tics, not stims. However, we have watched them come back when Dan is anxious or otherwise "heightened", We also had concerns that a hand movement Dan does was a tic, although this is more under question. He bends his hand at the base of the fingers into a right angle and the hand moves in front of, and over his face, fringe, mouth, etc. He is not aware when he does it, and gets a "wrong feeling" when he is prevented from being able to do it (sports lesson with hands tied behind back). Regardless of whether that one is a tic or a stim, it has become clear from subsequent opening up by Dan that he has several tics now. We have seen the facial ones but only when he's worked up, he says it's there most of the time and never went away when he was younger - he describes it as a "tapping" under the skin of his face, and he feels compelled to rub it hard when it happens (although that is not the hand thing, it's different). He also gets involuntary shrugs when he wees, and his feet and legs twitch a lot. Apparently someone touching his legs or feet can bring them on or makes them worse. He also has signs of a vocal tic from his description of things - he says sometimes he can't get a word out. He can remember the word but his mouth won't make it, and sometimes he gets the first letters out. We had noticed him repeating words "the the" for example, and stumbling over words when agitated or animated/excited, but we had not noticed this inability to get them out, and had put the rest down to the word processing difficulties and his fast rate of speech. He did have speech therapy in the past for having very soft/babyish speech for his age (he was a late speaker) and for swapping consonents, particularly L for N sounds ("Can I have a life please" instead of "knife", etc).

 

Now I get to the bit where I really don't know what to do. Dan is in college, college are not supporting him properly (whole other thread), therefore his anxiety levels are through the roof. CAMHS have said college is the main cause of this anxiety. When I have spoken with the head clinical psychologist there, she has said that his tics are back because of this. Dan will not leave college and that is something we have to respect. We're in the middle of a big formal complaint process and CAMHS are going in to "educate" staff on how autism relates to Dan specifically.

 

The head psychologist says we should not under any circumstances treat the tics medically. She says medications for tics are very dangerous when it comes to side effects and we would be swapping one issue for a multitude of others. She has said that the key is his anxiety, and when his anxiety goes away, so should the tics, or certainly come back to a level he is not self conscious of. However, they're not treating his anxiety. He's going to have some hypnosis and NLP in a few weeks for his post traumatic stress, I don't know if this will help and at this point we have to wait and see if he is even a good candidate as they can only determine that once they start. He will be having an OT come into college to talk to him about emotional control and even try and talk him into going elsewhere, but in the meantime we are left dealing with this alone. Our GP will not deal with Dan's issues at all - he says children should never be medicated for depression or anxiety and that it's all down to poor parenting (get this, last year he even blamed my divorce when Dan was 2 at the time, and suggested most kids get over their "melodramatics" with a smacked bum! Yes we're changing GPs lol). I do go along with the basic premise of avoiding medication where other methods might be less risky, but we're not talking minor adolescent issues here, he's been hospitalised for a breakdown in the past. Visualisation isn't his strong suit so getting him to bring his own anxiety levels down is going to be tricky.

 

I was hoping you guys could fill me in on how you've approached these issues if you have experience of either? Is there anything we could be doing at home? We're in the process of waiting for the sensory report so we can make him a sensory bedroom but other than leaving him well alone when he's upset, I feel totally useless? I have booked two tickets for a talk by a gentleman who wrote books on mindfulness, it's at our local NAS group, but he doesn't want to go (social anxiety, God it all adds up doesn't it, the poor fella).

 

Thanks

 

Kathy

xx

[Sally44]

It is about reducing and managing anxiety. No amount of therapy is going to help with that if he then has to go into an environment that he cannot cope with. But I am not saying turn down any therapy he needs. Just that the therapy might help him in any number of ways, but the fundamental is reducing his anxiety.

 

You may need to consider another learning environment or college if the current one is not being helpful.

 

Things to consider are that they should be smaller and low arousal.

 

So a smaller college, smaller classes, less stimulating environment ie. walls, decoration, distracting things that would overload or overwhelm him

 

Specifically in college for things to be tailored to his needs ie. lessons on worksheets if needed, a reader/writer if needed, being able to record lessons on dictaphone. Adult support to go over lessons and what he is expected to do. His speech and language and auditory processing problems are going to impact on what he 'hears' and what he 'comprehends', so an adult to check he is on the right path.

 

He may need help with organisation and planning of projects, homework, classwork etc. He may have short term and working memory problems that need to be supported via worksheet printouts etc. He may have problems with sequencing etc.

 

I would suggest medication as a last resort WHEN everything else has been done and tried and still isn't enough. Medication will 'mask' the issues and not resolve them.

 

If he had no other issues other than anxiety, then medication now might be appropriate. But he is anxious BECAUSE of ........ and he may well have heightened anxiety as well. But the more issues are resolved and supported the less the anxiety.

 

I presume he has a diagnosis? Does he receive DLA. If not claim it as it gives you access to other things.

 

You might be able to use Disabiity Discrimination laws too if he cannot access learning because the college have not made reasonable adaptions and provided the kind and level of support he needs. Someone within the college should be assessing all this and putting together a support package.

Edited March 5, 2014 by Sally44

[oxgirl]

Hi Kathy, I sympathise. I've had facial tics ever since I was 12, they tend to vary in terms of severity according to how I'm doing re. stress, so I can relate. Have you thought about some sort of herbal or natural remedy for stress, just as something to try? Kalms or somesuch, which might just take enough of the edge off of his stress to get the tics under control. I know myself that the more I think about the tics the more they occur, so distraction or keeping busy is essential when I'm feeling like I can't stop them. What about exercise, will he do any? Running is a good one, or swimming maybe, relaxing and distracting both at the same time. I'd really like a punchbag, but don't have the space, would he enjoy something like that?

 

~ Mel ~

[KathyM]

Thanks, I really appreciate your help.

 

Sally - you know I think you're advice is always spot on. In this case though it's all a matter of choice, Dan chooses to go there, and so we have to make sure they (and we) support him in his choice. Yes, Dan finally got his diagnosis in December, it's the standard ASD one, but with autism specified (because of language delay). He hates to 'lose' and to him quitting would show him as weak. On top of that, even though he hates the place, it is his 'norm', his routine, it's predictable even in it's crapness, his 'friends' (using the term very loosely) are there. We would prefer him to move but we can't force him to. Yes he has high levels of anxiety anyway, always has had. Yes the college are making that anxiety much worse. Of course we would prefer to work on everything else before resorting to medication, but firstly outside of college we are but everything is undone by him being there, and secondly I'm not sure that it's achievable with or without medication as long as he's there. We can lower it at home, holidays in particular make a huge change for the better, but as soon as he knows he's going back, those levels rise again. If he was on any other course in the college, he would be fine, so the thinking is to get him through these last hurdles without having another breakdown. It's horrible that we're thinking in those levels, but that's where we're at because of his history.

 

What I am even more worried about is that soon on top of all this anxiety, he'll have exam anxiety too. He has the extra time sorted, but other than that he'll have lots of extra anxiety and I'm not sure how much more he can cope with. He is adamant that he's not moving college, and I agree with him that it would be a year wasted if he left now, much as it saddens me. I suspect even after exams it will be a year wasted. CAMHS are meant to be sending in an OT to work with Dan and part of that will be trying to raise his confidence in the idea of changing.

 

He's onto his 6th English teacher since September, and that's his 'worst' subject because of his dyslexia. His new English teacher is Polish and often needs translation herself. I want to say very clearly I have no problems with teachers from other countries, my concern is his ability to deal with very different charismas and accents and his view that she can't even speak English never mind teach it - that and the fact that a lot of changes in a class he struggles in (without any warning) does not support him succeeding. On the plus side it's the first time he's dealt with a new teacher and only "hated" her for one lesson. Normally that lasts a lot longer! But there was no warning, and they've moved his options class without warning him too, he turned up to Sport (the only reason he attends is Sport, it's his favourite) and they said he's not on their list any more and had been moved to another subject (Uniformed Public Services). They are doing it on purpose - they tried to have him removed on his meltdowns and then him dragging his feet and getting in late, and the learning support service stepped in on both occasions and said they wouldn't approve. Then they asked me to find him somewhere else, told CAMHS and Connexions they didn't need to update his support if I agreed to take him out, and now that hasn't worked, they're purposefully breaking the Section 139a to make him so frustrated he quits. Thing is, he won't ever quit anything, ever. He 'has to' win, it's in the assessment reviews. None of his teachers will allow him to use his headphones or have the breaks he's meant to get, this is all on the Section 139a too. Course leader says it's down to teacher discretion as to whether to allow it, as if he gets special measures they will have to allow them for everyone, which is absolute rubbish.

 

Anyway, I'm wandering off the subject, college is really bad but he also has a generally high anxiety level without all that. They think his sensory and social issues are the cause of it, he is very noise sensitive and doesn't like to be touched, and on top of that has had two very serious assaults in the past and a breakdown, before all this drama with college. I am worried sick about his anxiety levels.

 

Mel - you're a star, thanks. Dan is really into sports, very active normally. Last year he was doing some sort of sport every day and that was great for him, his anxiety levels were still up there but nowhere near what they are now. He is now on a course that is mixed in that it was Sports and Uniformed Services, the idea was that he would get to pick which he specialised in, and he picked Sport. Even on picking that choice, his sports lessons were cut to 2 or 3 times a week. Now they've taken him off the Sport course and moved him to UPS, he is not doing any, but that only happened last week. Outside of college he stays in all the time and that has been a great concern to us. However, last week he started going to a football club that is run by the NUFC foundation, and there is an opportunity where they will be picking two lads from this course to put through coaching qualifications (his dream). My husband has done these courses through the same foundation and our local blind association (and has been trained to coach disabled players) and so the NUFC foundation team know him well. When we contacted them about Dan, they invited him to bring Dan to lower his anxiety about coming alone. So he's going to that, one 'normal' session at the college sports hall and one with the blind society that my husband takes part in (so Fridays and Saturdays). That's a huge step forward to the sports-mad lad who stays in all the time outside of college. He still won't do things that involve him going alone but that'll come in time. He used to box at college and use the gym daily but now he's been moved off the sports course he doesn't get that opportunity. We need to get him involved in more outside of college but it's very very hard to get him to take part. I'm hoping in time with this football club he will gain some confidence to try more.

 

He also had the NCS team come into college the other day - he took part in their summer course last year and the leader he had asked him to consider doing the International version of it (ICS) and also to consider becoming a leader there. He was very excited about this - to do the international one he needs sponsorship by a business for £800, and to be 18 (so a year and a month away) and he'll have to be eighteen for the leader role too. It would be voluntary but that would be his ideal summer job. We're all quite excited about it!

 

In the meantime all I can do is keep pushing college, but I think they'll keep putting it off til he leaves. His Section 139a has been in place since May last year and they have yet to implement a single strategy off it, even with an official complaint going up through the ranks to the directors. xxx

[KathyM]

Oh sorry, I forgot to add that no he doesn't get DLA. He doesn't want to apply for it because he'd get a medical. He is also concerned that because myself and my husband are already receiving DLA for our own issues that they will see him applying as some sort of fraud. He would not attend a medical under any circumstances so we are just muddling on until he changes his mind - he's got enough pressure on without that. xxx

[Sally44]

You don't attend a medical to apply for DLA. I found an independent benefits advice service via my local authority and they helped me complete the form. They know how to word it. You can give the contact details of any professional you think would be helpful [and think carefully about that because some of them are not!]. And you can include any correspondence or reports you have about your child.

 

Not sure if his age means DLA or AA [or the new name it is now being given]. It does not matter that anyone else in the household also gets DLA or AA or Carers Allowance.

Edited March 9, 2014 by Sally44

[Sally44]

Can IPSEA give you any advice at all?

 

I presume the college themselves detailed what the support was that Dan needed? And now they are not providing it, or allowing Dan to use the things he is supposed to as part of the support package?

 

I don't know how you complain, or who to - but I would lodge a formal complaint and bring up Disability Discrimination if that would help.

 

In my experience any time that we have been promised something and it then fails to materialise, I always ask that person to put in writing why x, y or z is not going to be provided or allowed as was promised or as is detailed etc. People are very keen to "say" things verbally, but it is a whole different ball game when you ask them to put their name in a letter and detail why they are not allowing a disabled student access to the supports he is supposed to have as per the document you refer to.

[Special_talent123]

I got a tic yesterday that affected my speech. Extreme anxiety can cause me to tic. Can cause me to stutter too and can cause non verbal speech as well. At college what is it that he finds stressful is it the work, the class the amount of people in it?

[KathyM]

Hi, sorry, it's been hectic here. Sally you're spot on, that's what we're doing. Connexions made the Section 139a, learning support autism team turned it into a learning support plan, course staff refusing to use it.

 

Special Talent, Dan has severe sensory issues, in particular sound and the course is in a temporary building which is very noisy. The vast majority of students have behavioural problems too. Dan has been refused the measures set out in his LSP to help him, eg. breaks, headphones, access to the sensory room. He also knows they are trying to force him out which adds to it all.

[KathyM]

On the subject of benefits, it would be PIP he applies for and it is likely he could get a medical xx

[Sally44]

I would still suggest you get in touch with Citizens Advice and see if there is an organisation that can help you with the application, as it is often about wording things correctly. Sometimes it is hard for us to see what the need is because it has become 'normal' within the family to do things in that way.

 

Can IPSEA help you with the fact that the college are not providing the support they are supposed to.

[KathyM]

Well, again, sorry for the late response, in a minute you'll understand why it's been so hard to get time to post.

 

On Monday afternoon we carefully worded a response to the reply we'd had from the Director, in which she had said that the result of the investigation was that the LSP was available for teachers to read if they chose to. In our response we quoted SENDA and the DDA. Tuesday afternoon he was suspended indefinitely.

 

We have met with the college and the whole incident started with him having security rang on him for him quacking like a duck (not in lesson time either). Two other rowdy kids involved (who in the bigger story were really not helpful and were far worse than Dan, which college told us). There was a threat made by THAT teacher, "Dan do you want me to call security to come and restrain you?", and things went downhill from there. Course leader had a go at him for not being able to stand still, "Stop rocking, you're being rude, stand still!!" (remember the sound sensitivity on top of his rocking to self soothe), and because he couldn't stop rocking, they called security. Security made a complaint because when one of them called him an "Effing chav", he gave them abuse. A silly situation made into a dangerous one by mismanagement. Yet again I wasn't called. Security's response to his rudeness was to tell him the teacher had told them he wasn't ever welcome back so not to bother coming back in. It was only after I rang three times with no answer the next morning (it took him til 9pm to come home that night) and then emailed the director, that I got an email saying he's suspended indefinitely pending an investigation.

 

We've met with the college (yesterday - the director the complaint went to and the course leader's manager) and it went better than I expected but I'm still foaming. They are investigating the teacher for not only the comments she's made to Dan about his autism, but also throwing him out of a class that hadn't started for essentially a very trivial issue without even asking him to be quiet. Well they say they are investigating, we all know she'll say she didn't have any part of it and they will back her. They are reducing his timetable (dropping parts he is not interested in and doesn't need, eg. retail and a work skills course that revolves mainly around retail too) and looking into alternative environments for him within the same course - so possibly a support worker with him in the learner zone/library. They've said in the incident this week and last, the same girl has been the ringleader, and their main concern behaviourally was and still is her. She is apparently "toxic" and "on self destruct". Not sure how I feel about her myself as I have sympathy for anyone who has this staff saying words to that effect. However, this is the same girl that told Dan she was autistic too and she was allowed to walk out of lessons whenever she liked and therefore he should do it too. This is a lie, she is not autistic and she isn't allowed to just walk out, and she has a history of manipulating others. They've said he'll do anything she tells him to and anything she says is gospel. It's not a crush thing, he's just like that and has up until the last year or so always hung round more with girls than boys.

 

On the plus side, the morning after, I knew what the security guy had said, so I wanted confirmation of whether he was allowed in, and kept him off til I heard back. That girl hadn't been told she was suspended either, but had gone in despite what security had said. Dan got a phonecall off her at 10am (I'm so glad he often puts calls on speaker phone as he doesn't like his hair getting touched lol). She said "Have you been effin' suspended cos I have and I'm effin' telling them they'll have to effin' drag me off kickin' and screamin'. I'm not gannin' anywhere!! Get your down here and sort them out with me, I'm startin' an effin' riot!!" He said no. The first time ever I have heard him say no to an order like that. He then came and talked to me about how ashamed he is and how he doesn't think he should be with this girl in or out of class.

 

He says she follows him and that she looks to him to lead her, and they say it's the other way round (this I believe as he has a history of this). He is always going beyond the normal realms of protecting his "friends", he always say they have no influence over him and he's their "leader", and reality is that he follows them, he does whatever they say, not the other way round. And when they get pulled for it and land it all on him, he defends them. I think this is to do with his fear of showing what he perceives as "weakness", that he won't admit he's a bit gullible for want of a better word (and I don't say that as a criticism, it's just who he is) or that he looks to what they're doing for direction. He doesn't just try to fit in, he totally reflects them, everything they do. It's the same with being on time to college, another lad is always late and tells Dan to wait for him, and Dan will tell me he doesn't even though I've heard it. He'll be sat on the bed totally ready to go for over half an hour and the time will come and go while I keep telling him to get out the door. His phone will ring and he'll run down the stairs and open the door and that kid is there! When I try to talk to him about all of these scenarios, he gets very defensive and says they have done nothing wrong, they have no influence, etc. Once, one of these lads bumped into him as they were leaving a shop, and said "Here, carry these, they're heavy!" as they walked out the door. You can guess the rest, and it's on his record, and he still defends them (thankfully that lad isn't on his course this year).

 

Anyway, back on the suspension. I have been promised that I will have his new timetable tomorrow (tomorrow afternoon is when CAMHS go in to do a session with the teachers and CAMHS have asked me to go too to help teach the teachers about him) and that he should start back on Friday but it might be next Monday. I am still not happy about any of this, more so because although I have a scenario I have not been given a reason for the suspension, nor has my point got across that at a certain point there is the point of no return with him and whatever comes out of him at that point is not under his control (yet, we're working on it). He has also missed out on a very important CAMHS OT session within college because of it, and we couldn't even warn them as we only found out he was suspended after he was due there. However, I really wasn't expecting to hear that they're going to do x, y and z when we met with them. So although I'm guarded about this, I'm giving them to the weekend to get this mess sorted. xxx

[Sally44]

Although it sounds like the college are not doing what they should in terms of support; I think it must be a nightmare for them to be dealing with a group of children who are behaving like you have described the circle of teenagers around your son, which also seems to include your sons behaviour too? And your son should really find a better group of friends than these because they do sound like trouble and no teacher is going to go out of their way for any child behaving like these children are.

[Special_talent123]

You know his tics he is having is he getting tremors, because i am

[KathyM]

Hi everyone

 

An update, Dan has been forced out of college. They would not explain why they wouldn't allow him support in class. His choice was one to one on a reduced timetable or nothing. He quite understably felt this was punishing him and decided to leave. While I am sad for him that they wouldn't support him within the class setting I am very proud of how he dealt with this decision as he had to face them and did so politely and firmly without any disrespect. The others involved are back in normal classes. The teacher who we strongly believe should not be allowed around children is being investigated but our complaint has been passed back from the director of the school to one of her colleagues so I don't expect any decent resolution to this (and that action alone violates their complaints procedure).

 

Sally if that was any other course I would agree, but it is specifically for teens who have not thrived in mainstream schooling due to exclusions and challenging behaviour. The majority have some form of diagnosis, many have ODD. If staff cannot control or support them and only treat them with negativity they have no hope. It was never right for Dan to be there but it was the only placement available while he didn't have a diagnosis.

 

As for tremors, Dan says his face constantly "taps" but otherwose no. His older brother does have severe tremors but he is not on the spectrum. He does have other causes too, he has an Erb's Palsy and a history of epilepsy.

 

On a more positive note we have been contacted by someone who works for ESPA and they are working to see if they can come up with an offer for Dan.

 

Thanks xx

[KathyM]

Bit of an update.

 

Dan has had a couple of people step out to want to help him. One is a lovely guy from ESPA and another is from another college a little journey away. Both want to offer Dan a solution. We've always had to fight to get him even a placement so to have two good places want to help is amazing.

 

To come back to Sally's point, this misconception is what Dan has faced for a long time. If he doesn't have any faith from ASD parents then what does that say? Jumping to conclusions that Dan was responsible for being discriminated against and bullied by adults who should know better is typical of what we've experienced so far. I thought people would understand that with some kids with ASD their only way to socialise is to reflect and mirror those around them, particularly when that person has been badly assaulted twice by the same types of lads. That's all he did, and unlike the despicable teachers around him he took responsibility and was punished way beyond what was reasonable. Hes lost a whole year thanks to those monsters and here we have people defending them. And I don't think anyone can justify threatening restraint and ringing security for someone quacking like a duck, let's be serious. They were looking for any excuse to bully him out and it worked. When he's not at that course he is never chavvy or disrespectful. He helps coach disabled football, he looks out for those who need help. He's not one of them. And on that note I don't think I can return here for advice any more. If the presumption is always going to be poor poor teachers having to put up with Dan then we don't have advocates here. Thanks for the previous advice and I wish you all the best in future.

[oxgirl]

It's a shame that you don't feel supported. I guess it's always going to be the case that people here only really hear part of the story and don't get to know all the facts, only you can know them. People just comment on what they know and that isn't always the full picture.

Wish you and Dan all the best for the future.

 

~ Mel ~