My daughter's tics and how to survive them - handhold

[Thelaughingtonepoliceman]

Looking for a combination of a handhold and a talking to and some practical advice.

My 12 year old DD has had various minor tics throughout her life, including whistling, making strange noises with her mouth etc. Most of them have lasted a few months and then faded. We lost her grandfather a couple of years ago and since then the tics have been terrible. Mainly consisting of screwing up her eyes and thrusting her head forward like a turtle. It's really very visible and I hate it.

This has coincided with a difficult time in her life, she's been really struggling to process the death of her grandfather and has started year 7 with all the adjustments that involves and she has also been seeing a counsellor. I've asked the counsellor about the tics and she has said, basically, that she thinks its a phase and doesn't advocate doing anything and it should pass. I've previously tried to get some CBT for her on the NHS but the waiting list is insane but now this (private) counsellor is saying she doesn't think it's needed. But it's now been two years and I'm starting to worry that it will have an impact on her social development etc.

I know that the best approach with this is not to comment or urge her to stop so I haven't. She seems not to be upset by them so I'm trying to show that I'm not. But (and I feel so ashamed for saying this), I absolutely hate them. So much so that its difficult for me to be in the same room as her sometimes. It's so disfiguring and ugly to see her looking as she does when she does these horrible head-thrusting movements and the urge to shout out "just stop" is so huge I have to walk away. I'm trying really really hard not to let this show. And succeeding mainly but it's making me very stressed and anxious and I'm sure she must pick up on it.

Has anyone else been through this and can they offer any words of wisdom? What do you do when your child keeps doing something you can't bear and they can't help? And is there any way to deal with it other than to wait this out?

I would book some counselling for yourself, so that you've got someone to speak to about it.

I would continue to ignore it. Has she been watching tik tok videos? My daughter has had some minor tics/repetitive movements.
She's autistic, and its part of that.

She did then start doing some more obvious movements, which I ignored. And spoke about tourettes - she had been on tiktok.

She still does it, mostly her eyes/facial expressions.

Tourette's ?

Couldn’t read and run - I know exactly what that feels like. DS (17) has a tic disorder and there were times when I locked myself in a room to be out of view and had a little cry about it. It peaked when he was the same age as your DC.

We hoped he would grow out of it - that didn’t happen. BUT they are now a lot milder. He gets noticeable ones maybe two or three times a year, and they follow the same wax and wane pattern, done and dusted in a week or ten days. Others come and go but we never notice them.

He also has a great bunch of friends, does drama and debating, puts himself out there, and anyone who has a problem with his tics can go boil their heads as far as he’s concerned.

Your feelings sound absolutely normal to me. If your DC follows the same path as most kids with it disorders then be assured that better days are coming.

I have family experience of Tourettes. These sorts of motor tics are completely involuntary. Trying to get her to stop/modify them would be like trying to stop yourself blinking.

I know it's almost impossible not to just make a few small, gentle remarks here and there, but a) it's completely pointless in terms of stopping the tics, and b) it's just going to add a big dollop of shame for her to deal with alongside everything else.

(I've just realised that none of that is actual helpful advice on HOW to ignore it! Do you have any mutual hobbies that can help you fill your time together, and take the focus off the tics?)

I just wanted to say I do understand. My daughter started to develop very obvious tics at 12/ 13. She was very anxious about secondary school and puberty. I think she meets criteria for tourettes ( both vocal and movement tics for over 12 months) but getting a formal diagnosis is hard even though shes with CAMHS. She was diagnosed with autism at 14.
It is hard to watch and sometimes I too want to say stop it, but bite my tongue as advice is to ignore.
It's worse when she's stressed or excited.
Which isn't helpful as it often happens if we are out, at a restaurant, in the theatre etc. They don't happen as much when we are at home now ( she's nearly 16).
I think there is some therapy you can have to try and control the tics, I think deflecting to something else, like tapping your foot for example but it's difficult to get a refferal for it and is meant to be very hard to do so they really need to want to do it for themselves.
On another thread on here recently someone recommended a magnesium supplement as being helpful- I haven't given it to my DD but can't help to try it.
Maybe counselling for yourself would help as if your child is neurodiverse or has MH issues there is a period of adjustment, almost like a grieving process of lost dreams / expectations etc. It takes time to accept things have turned out differently to how you hoped, but gradually it gets easier.
Just show your DD unconditional love, dont bring attention to tics when they are happening. But perhaps say at quiet calm moment later on that she must find that really hard and ask if it bothers her or upsets her. Then if it does ask if she'd like you to pursue a referral via GP to see if she could get managing them.

I have a number of tics myself (I have ADHD) and I couldn't stop them if you paid me. They're involuntary. She absolutely can't 'just stop'.

I do understand how you feel though. When it gets to you, you need to walk away, do something else and let yourself decompress from the stress of being aware of it. You're not wrong to feel this way.

Thanks to all of you.

My DD isn't actually overly bothered by it: we've talked about it. She says she's barely aware of doing it and it helps her manage stress. She does it a lot more at home than when she's in social situations so it may not meet the technical definition of a tic, its more of a semi involuntary compulsion I think.

She is having some anxiety issues about unrelated things (which she's having counselling for) but I've asked the counsellor and aside from this she doesn't seem to fit any obvious criteria for neurodiversity. I have wondered about trying to get her diagnosed.

@GreenGarlic my biggest fear is that this one won't disappear. Her previous ones have all faded after a few months but this one seems to be going strong still after two years and I worry that it's now almost part of her personality. It is awful to look at because obviously I think she's so beautiful and it just disfigures her face so much, it's heartbreaking.

The problem is me, really. I really want to learn to accept it and at the moment I'm struggling so much that it makes me not want to spend time with her. Maybe I should have a couple of counselling sessions.

Variety of motor and vocal tics for over a year = Tourette's. Take to GP and ask for referral. Stress typically makes tics worse, so counselling and CBT for anxiety can help a bit, but you need to try to accept them/ not draw attention to them. There is medication that can reduce them also.

Lots of people with tics/Tourette's try to suppress their tics in public but then need to tic more afterward.

Counselling for you might be good if it's getting you down 💐

@Nothingbuttheglory I've previously been to the GP and they said it was an 18 month to two-year waiting list. I tried to get my company health insurance to pay and they wouldn't. I've gone private for the counselling (as there are broader issues that needed dealing with more urgently such as the grief) but the counsellor thinks this isn't something that is worth treating (and probably doesn't have the expertise to treat it anyway). I'm probably not able to finance two separate sets of private counselling for her at the moment.

I guess I could go back to the GP and get her on a waiting list, it might help just feeling something is being done.

I do think I need to speak to someone about it though.

No advice about how to accept it but when we were in the same position, tried essential oils for Tourette’s, Epsom salt baths for magnesium and better sleep and a multi vitamin including B vitamins, tics did reduce a lot, could have been a co-incidence but felt good to try something. Like you I was stressed about it and that’s hard to hide so anything you can do to reduce your own stress is good too so you don’t end up adding to the situation

There’s a truly fascinating video here about how tics can be caused by unprocessed emotions.

It’s like the body is trying to complete a stress/trauma response but gets stuck.

If you can develop some understanding of what might be happening from a compassionate viewpoint I think it could help you be more accepting of what’s happening to your beautiful daughter.

Please watch it, it will really open your eyes… Dr Peter Levine is a trauma doctor and his writing/books are brilliant (Waking the Tiger etc)

Please note too that trauma is a sliding scale - I’m not saying your daughter is traumatised, and for all I know there may be a completely different reason for the tics. But grief can be a kind of trauma and we all by nature of being human go through various degrees of trauma. It can be exacerbated by being emotionally alone with something. If your response to your daughter is to recoil in disgust she may well not feel emotionally supported to be able to process whatever’s going on for her. This isn’t a fault/blame game btw and may just be a felt sense for her in response to what you’re feeling, rather than anything you’re doing wrong. But very much worth thinking about whether you can focus on processing your own feelings of annoyance/disgust so you can be truly present for her with whatever’s going on for her.

Both my children have tics. DD 14 was diagnosed with Tourette's last year and it sounds very similar.
Poeple 'hold in' tics on social situations, so coming out when in a safe space. It's good she doesn't get bothered by them.
My DD sees a community paediatrician and she's on clonidine to help with tics, which it does, but lately the GP has been able to prescribe it so may be worth sn ask at your surgery if they'll see her.

I'm just amazed that someone would say that something that's being going on for two years plus is just a phase! I also can't imagine why they would say it doesn't need any further input when it's been going on so long, I don't know how a counsellor would be qualified to judge that - I would be a bit wary of this counsellor, did you know that anyone can call themselves a counsellor? Did you find someone that was properly qualified through BCAP?

Just think OP, if you'd put her on the NHS waiting list when this tic started you would have seen someone by now, so my advice would be to get her on there asap so that in two years time you're not in the same position.

DS has ASD and has had tics so I know how awful it can be, try to just busy yourself with something else if she is doing it. I would also encourage her in anything she finds relaxing or really enjoys to try to reduce her stress levels. How do her peers handle it if she tics at school?

I have ADHD and tics, they've got milder as I've aged and I'm aware of some of the things that trigger them now also.

I found your post incredibly upsetting. Poor girl having a mother who can't bear to be in the same room as her because of something she can't help.

@Thelaughingtonepoliceman I just wanted to reach a hand out to you... I know exactly how you feel. My DS (8) has had tics since he was 5. I myself have OCD so I know he got his tics from me! I feel terrible. And on top of that, I'm massively struggling to come to terms with his tics. In fact, I've recently started having therapy to try and help me deal with it. I'm falling apart about it. They've come on stronger since shortly before his 8th birthday. I feel actually desperate about the situation. I'm a catastrophist too, so you can imagine all the grim scenarios I've painted in my head about what this might mean for him.
His are mostly vocal tics... lately a snoring sound followed by a 'tsk'.

Hi, how’s everyone getting on? My son has had tics for over two years , it really is incredibly difficult to deal with. I thought he was coming to the end of thrm and then tonight a grunting tic appears out of nowhere!! Really hoping it disappears as fast as it appeared. My mood is so dependent on how bad they are, I hate it ! Can’t wait for them to disappear!!

Dd tics, like other posters, peaked around 12 ... change of school and sky high anxiety. Tics were very ' energetic', arm and leg shaking, touching shoulders and knees. I d noticed how they got worse in stressful or new situations. However, by late teens they had gone... just the occasional one when facing pressure. My point is, I don t think they re set in stone.

I'd hate it to0 OP. You're not alone. MN pretends that every single parent's child has zero negative feelings about about any health or development issues.

My older son was diagnosed with Tourette’s. We were told to not try to stifle the tics. Problem is one of the tics involves smacking his lips/tongue. My younger son was diagnosed with Misophonia. The sound of smacking enrages him. So we’ve had to separate them at mealtimes. One eats meals in the kitchen, the other one in the dining room.

Following with interest.

DD2 (10) has developed tics since Christmas which I'm not so concerned about; I'm a primary teacher and see tics come and go. Hers are neck upwards ‐a stare, jutting her jaw, a series of small clicks of the teeth, 'sliding' her head side to side. I initially asked if she felt able to refrain from doing them or if they just 'popped out' and she said she didn't even notice it, and that she definitely didn't want to keep trying not to do it, so we've left it at that.

What's more worrying is that a) her teacher has reported periods of intense anxiety at school (don't see this at home) and b) at home I have seen some surreptitious tapping of seemingly random objects. I know the tapping is on her mind and indicative of something else, because she tries to hide it, which causes strange little behaviours, such as inventing a reason to go back into a room after I've asked her to get her shoes on, for instance, so she can tap twice on the side of the sofa, or wherever, before coming back to sort her shoes. I'm not sure what it's about yet, but feels like it's part of the same picture.

However long the waiting list is you need to get on it now, otherwise you may be in the same position in 18 months time and still be getting no help.

DS (11) has tics. He is unbothered by them and his teacher has said she has never noticed so I presume he must do them more at home.
It is hard to ignore and on occasion, when they’ve been off the scale, I have told him to calm them down. He was able to slightly but not stop. He was referred about 8 months ago, haven’t heard anything yet re an appointment.
He starts secondary next term so I’m nervous about how that will go for him.

Go back to the Gp and get on the waiting list for a Tourette's diagnosis.

Look up the Tourette's society online for support.

You're supposed to act like your daughters tics are absolutely wonderful and never have an issue with a child suffering from difficulties on mumsnet.

It's normal to be upset and embarrassed by them. There isn't anything wrong with you. Watching her her face up and distorting it whilst doing a strange head movement would be very uncomfortable to watch and possibly embarrassing in public and even at home.

You aren't screaming, shouting and hitting her when she does it. You just feel upset and frustrated and remove yourself from the situation. You're actually doing better than you think in your response to the to ticks.

Watching her distorting her face and screwing it up- sorry I mistyped and say 'watching her her'