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What to do when tics start being distressing to the child(18 Posts)
Can anyone advise please?
Ds has always had a variety of tics, both vocal and physical, that appear when he's stressed.
This week he has started a new one, which is a sort of head jerk, followed by a head shaking movement and it's pretty much constant.
The thing is, he has always been oblivious to his tics before, but he is acutely aware of this one and it's distressing him. He says he can't stop it, it just keeps jerking.
He keeps asking me what to do about it and I have no answers for him. I've told him to do something he finds relaxing and he's currently reading his Star Wars Visual Dictionary, but it isn't helping.
I also had a chat with him this morning, away from the tic context, about whether he was happy and whether there was anything bothering him. He got very upset about the other lads in his year all being heavily into Binweevils and him feeling excluded because he can't go on it (house rule, no online communication other than supervised email). So, we looked at it together and text his bf's mum to ask how she's found it since her dcs all started using it and we have said we will set up an account, but he will have to earn the access to it and it must be supervised. He's ok with that.
The thing is, I think the binweevils thing is a bit of a red herring and basically a flag that he's majorly struggling socially at school. I'm wondering if that's what's behind the tics, but at the same time, school is pretty much a car-crash across the board at the moment, but he's not opening up about it.
The thing is, I am at deadlock with the school at the moment. They saw dh a few weeks back, but have done nothing but balls things up further since then and have now denied me a promised IEP review meeting and deliver a completed IEP to me in the playground as a 'done deal'.
I have emailed his inclusion teacher with my concerns and asked if it might be possible to have a conversation with her boss, as she has recently been into school to discuss ds and the SENCO claimed that both the teacher and her boss were involved in writing the
frankly worse than crap IEP.
All a bit of a mess really. We have been trudging on, like wading through treacle, but he is clearly suffering and if I can't do anything about the school issues, is there at least something I can do to help him with this tic?
Referral to a paed or psychologist to discuss?
Hi moose, I am sorry I have no advice for you but I didnt want to not post
Getting no support at school is a nightmare and once you reach deadlock it is very hard to move forward.
What are your parent partnership like? Mine were quite good with advice but wouldnt attend meetings with me.
Is moving schools or HE an option for you?
Sorry you are having to go through this. Am honking for you.
And the Huebner What to do series, the one on worry is very good.
I agree with hothead - it might be time to discuss medication or other therapy to deal with the anxiety as there is a strong link between that and the tics. In the past ds has tried risperidone, which he didn't get on well with, though I know other posters have had more positive experiences and is now on an ssri, which appears to be helping with anxiety and consequently tics have also decreased.
He's already under a paed, who was the one that was involved in his dx, but is currently only dealing with digestive issues.
We've been through the loop re anxiety referrals before, CAMHS won't see him because they 'don't do ASD' and the GP says there's nowhere else to send him.
Ineed, thanks for the honks. Parent Partnership came with me when I insisted on a meeting to discuss their non-implementation of his statement and were poised to attend the IEP review. I haven't had chance to tell them the school are denying us a review this time as yet, because they only launched the completed IEP at me in the playground at the end of last week.
No chance of changing schools and to complicate things he is in y6, so we are dealing with all the transitional stuff to do with that anyway. He absolutely doesn't want to leave or be homeschooled no matter how bad it gets and there's no talking to him. There are things he likes about school, but the bad stuff is just too big to get past at the moment.
I'm a bit uncomfortable about going the medication route without trying to get him some therapy first, but don't know where to go to get some having been refused by CAMHS. I am not anti-medication, but feel it should be second rather than frontline treatment, iyswim.
Hothead, I will google Huebner in a mo. Thank you.
CAMHS in your area might not do ASD but they should consider the tics as a separate issue. Speak to your GP about it maybe.
I think I'm going to have to book yet another GP appointment for him.
CAMHS, flatly refused to see him last time, just sent a couple of leaflets for local social skills groups, all of which were for older children.
Who do they think is going to take responsibility for the mental health of dc's with Asd??
I would definitely go back to your GP and ask that question*moose*, somebody must be responsible!!
I think this could be another of those closed doors that we have to kick down, moose.
You're not wrong Ineed.
I've just been doing a bit of googling and there are lots of research papers about the reality of severe anxiety in children with ASD, but these actually comment on how little research has been done into what treatments are most effective.
It seems to be seriously under-resourced with everyone pushing it off onto each other and no-one taking responsibility.
Hothead, I googled Huebner, then realised we already have quite few of her books. I currently have an Amazon basked containing about a couple of hundred pounds worth of books I thought might help, but can't decide which ones, if any, to buy.
I'd write up a letter to the SENCO saying "Thank you so much for the proposed IEP for DS that you have provided. I will review it immediately and prepare notes regarding any concerns for discussion. Please advise me of the date and time for the IEP review meeting, so we can go over it in full."
DS1 has Tourettes - exacerbated by stress. As they get older (yr 5-6) they become aware of tics - this can be because other children are copying them?? I'm afraid I don't have any advice other than to reduce stress. If you don't you might be able to reduce one tic but the stress pops up in the form of a new tic. View the number of tics as an expression of anxiety that cannot be verbalised.
Triggles, I've gone the indirect route, as otherwise she would just give me the runaround and avoid me while I chase after her for weeks. I've written a massive cat-among-the-pigeons type email to the inclusion team, essentially asking if this IEP was drawn up by them as a) it is pant and b) it clearly does not meet ds's needs, let alone resemble anything that relates to proper practise in supporting children who have ASD.
I've asked to speak directly to their head honcho, as I think there's something going on behind closed doors and I'm not convinced the SENCO is telling the truth when she says the inclusion team wrote it with her. She may have asked them some very specific questions, targetted to get the answer she wanted for her own purposes, but if this is what a specialist ASD team produce in relation to support and targets for a child with ds's issues I would be extremely shocked, as it shows a complete lack of understanding of his needs and a flat out refusal to implement the statement as it was written.
Going on past experience, the inclusion team are usually very good - so I'm thinking this is all school/SENCO and they are just trying to pass the buck and hope I'll back off. What she doesn't know is that ds's inclusion teacher and I have a good working relationship, email each other often and she even pops in after she's been to the school on occasion to let me know how her session with ds went.
Keepon - thanks. That's pretty much what I thought. I wish I could just pull him out of school for a while and get his stress levels into check. Unfortunately missing school just stresses him out even more as attending school is one of his 'rules'.
It all feels so unnecessary when he only has a few months left at that bloody school anyway. Why does it have to be so hard? Why can't they just use the damn money they've been given to give him the support the experts have told them he needs and specified in his statement. It really feels like they are refusing to implement the statement, as written, purely to get at me and they don't give a flying f*ck what that does to ds. Honestly, they are beyond evil to do this to a child, to deliberately ignore his needs, refuse to give him the right support and watch his suffer, when in actual fact what he needs is very simple and not at all hard or expensive to supply. Not to mention clearly set out for them in the form of his statement. I'm pretty sure this is all them-and-us stuff and to some degree payback for me getting him a statement when they said he didn't need and wouldn't get one. What is wrong with these people?
<and breathe - rant over>
I'm considering keeping him off tomorrow and calling the GP first thing, but it will depend on his reaction when I tell him. I'm pretty sure he'll refuse to stay home and if he doesn't he won't get a triage appointment and I'll have to book a general appointment, for which there will be at least a two week wait.
Really feel for you moose, have been in a similar-ish position but not as bad and it is so frustrating, drives you crazy. I found it helpful to write down all the expressions of stress and anxiety I could see in DS1 and I will take that to the next health appt. My GP is very supportive but I doubt we will get ongoing support which really is what you need.
I don't think I will allow him to be discharged this time but I will probably mostly use the appointments for me to take my concerns to and get advice. I also want all this logged. The levels of stress and anxiety DS1 experiences are not right at all. I may well look at medication, we'll see.
So sorry you are going through it too Hothead. It's heartbreaking and frustrating beyond belief.
He's on his Nintendo DS now and it's the first time I've seen him not shaking his head all weekend. Dh is just fixing my old macbook and we're going to let him go on binweevils (with some firm rules and parameters) so hopefully that might take at least one stress off him, as he will have something in common with the other boys in his year and can feel a little more included socially.
I think you're right. I need to take him and get everything logged at the GP every single time, so that there's a clear record of his stress levels. We saw a fantastic GP there last time and she was literally furious with the state that he had ended up into because of the school's behaviour. In fact she referred him to her the inclusion team herself, even though that's not something that's ever done in our area. Of course as soon as the school found out the GP and I had done a referral together, they brought in inclusion the very next day!
I think I'll call first thing tomorrow and see when we can get into see her.
What does he say would help? Does he know?
He doesn't know unfortunately. The only time he relaxes is when he is on his DS, I think because it takes his full concentration and he can then switch everthing else off. Even playing games on the laptop doesn't seem to have the same effect.
He can't even tell us what the problems are, we have to put it all together and work it out from hearing what's going on at school, monitoring his reactions and physical symptoms and from what he does manage to let us know when we manage to get him to open up a little. He sometimes tells us of 'worries' when he's in bed, but they tend to be the minutae, rather than the big picture (typical ASD actually, he can't see the big picture, but focuses on the little things instead and then those get built up out of all proportion).
The binweevils revelation came out of dh and I being concerned about his obviously high levels of stress and me asking a simple question at the right moment that went along the lines of "so ds1, how are things at school". First he said fine, then he said well not fine ok, then he said actually it's horrible, then his tears started flowing but he couldn't tell me why, then after about an hour he blurted out that it was because of stupid binweevils and how he isn't into them so he is getting left out at school, because everyone at school is heavily into it and it's all they talk about at the moment etc etc.
I am in no doubt that the binweevils thing was just the straw that broke the camel's back, as we have a massive list of problems with school at the moment, including things that both the school and ourselves know are bound to be causing him a great deal of distress. We have spoken in depth with both the Head and SENCO about them across two separate meetings - one of which lasted two hours - but nothing is happening. Lots of talk and no action, promises, but nothing actually changing. Meanwhile ds is getting worse week on week and the school are writing in letters and minutes that they seen none of the signs of stress we are telling them about - despite the fact that I have actually witnessed it at school myself and other kids are starting to comment.
Other than planning to see the GP, I've looked at some relaxation cds, that have good reviews from parents of children with ASD and think I might give that a go and his Inclusion teacher has just done a course on teaching relaxation techniques to children with ASD and has offered to come and do some sessions at home with us. (I'd forgotten that until just now, so will email her again and take her up on her offer.)
The Heubner book on worry/anxiety might help, it is factual and practical and aimed at age 6-12. It has some good CBT activities and will let him know there are other children like him and that's ok but there strategies that can help.
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