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?

Hi OP. This does sound like symptoms of Tourette’s Syndrome. The combination of vocal ticks, together with the neck thrusting/facial tics. Sniffing is also considered a ‘vocal’ tic (just adding this in case any parents have noticed this as a ‘vocal tic’ in their own child as I was surprised to hear sniffing was counted as a vocal tic when a family member was diagnosed).

Home will be her ‘safe place’ to release pent up tics. It’s important she feels that she can let go at home and tic away/let fly without feeling she’s got to try to hold them in. It’s very hard to restrain from ticking. Some kids can hold them back for a little while if they really try hard (eg if they try to hold back tics in school for worry about peer teasing), but its uncomfortable for them and like a ball of energy that just has to be released, so they won’t be able to hold them in for long at all. The neck thrusts can lead to sore neck muscles. Some kids hate their tics and wish they could stop them, but they can’t, except to sometimes hold them in briefly. This is a time in your daughter’s life to show her full, unconditional love and support. Kids can sometimes be cruel to kids with tics at school etc, so having a supportive/loving/kind parent who is 100% going to stand up for them, is important (not saying you aren’t of course).

Curiously, some girls either completely or partially grow out of their tics at puberty (some times, but not always). No idea why it’s just girls and not boys however, that sometimes ‘age out’ of them at puberty.

Learning to play a musical instrument can occasionally help to relax the brain/makes it focus and help to relieve tics as the brain focuses intently (depends on the individual’s brain of course). Tics will still occur, but sometimes the child is less bothered by them, as their brain is occupied with the music/playing the instrument. Good quality sleep is also important. Stress and anxiety often exacerbate tics. Lots of kids with Tourette’s are also diagnosed as being on the autism spectrum. Sadly, stigma still exists and some people can be cruel when they see a child/adult ticking. The person can’t help it though. It’s involuntary.

Please keep supporting your DD through this. It’s upsetting to see tics sometimes, but offering her unconditional, reassuring and consistent love will help foster her self-confidence in the amazing young lady she is x

We are going through the tapping/touching thing with my son. He is improving so much though and hardly does it anymore. It's horrible watching your child suffer!!

My 5 year old seems to have sort of vocal tics. He makes random noises or repeats words or short phrases almost constantly. It drives me crazy and I feel so over stimulated by the constant irritating noises. We've asked him to stop and he does but then starts with another noise within seconds. It got to the point that I've ordered ear plugs to try to minimise the sound slightly. They haven't arrived yet but hoping they help. Not sure what to suggest for movement though because you can block that out the same way you can with noise. If it seems anxiety related then therapy should help but you are already doing that. I have sympathy for you though, I feel awful when I'm thinking just stop making noise! But I don't think he can help it.

Bananaspanner - how long has your son been having tics ? I also have a 12 year old son who has them.

I’ve got Tourette’s, had it since being a child and I believe it’s a trauma response.

the body keeps the Score is also good on the subject of trauma affecting the body!

@EveSix that sounds a bit like ocd behaviour to me. I have Tourette’s and some ocd (hair pulling, skin picking). I understand that a tic (Tourette’s) is a less complex form of ocd. Tourette’s is a compulsion to do something and it’s less complex because it takes a lot less thought process that you’re cognisant of. So a tic happens instantly.

In people, Tourette’s is often accompanied by ocd behaviour which is seen to be more complex because the behaviour takes place over a longer time- a minute or so, and the thought process is more complicated for ocd. It’s a loop where the person needs to complete the tic, but it’s longer form. It involves tapping a certain number of times, pulling until you get blood etc. so it’s more complex ocd, but is still a tic.
see
https://adaa.org/understanding-anxiety/obsessive-compulsive-disorder-ocd/touching-movement-rituals#:~:text=Others%20with%20OCD%20move%2C%20touch,urgency%20to%20perform%20the%20ritual.

@Thelaughingtonepoliceman how are you getting on now?

My DD is being assessed for ASD & ADHD. They think she also has ARFID and Dyslexia. I've only just realised that she has some minor tics, mainly vocal.

I would get her on the waiting list to be assessed, especially if ASD has been mentioned before and get in touch with the Tourette's Action UK.

And I can truly sympathise with you wanting to hide away. Visual tics like that would be difficult for me to cope with

@SiouxsieSiouxStiletto

Thanks for checking in. My DD is finishing a course of counselling at the moment and the counsellor has said she can refer my DD to a therapist who specialises in tics but she has to wait until the counselling has concluded as it's not recommended to have two sets of talking therapy underway concurrently.

The tics are still there but the counselling seems to have helped with stress and anxiety to some degree so they have improved a bit. The counsellor is still convinced that she doesn't actually need the tic therapy: she says one of her sons had a similar thing and grew out of it and she believes it will recede. She doesn't think my DD is neurodiverse, which can be a major factor in persistent tics. But I think I will still go ahead with the tic therapy when this has finished. For now I just have to hold my nerve. Knowing there is a pathway to deal with it has helped a bit.

Thanks for your concern. Really helps.

I'm glad that the therapy is helping but I'm not sure the therapist knows all that much about being ND

I would get on the waiting list - it’s not going to get any shorter, so the only way to get closer to being seen is to be on it. You can always come off it if it’s not needed by the time you get there.

My daughter has Tourette’s.

She had minor tics all her life and then around 12/13 developed complex verbal and motor tics. She was diagnosed with Tourette’s after she’d had them for a year.

Unfortunately she went through a phase of suppressing after some bullying at school and negative reactions from fully grown adults out in public, which always resulted in an increase in tics at home and some nasty tic attacks which hospitalised her.

She was offered CBiT and habit reversal therapy, but ultimately decided against it and worked on her self esteem, her acceptance around her tics and feeling more comfortable ticcing in public instead.

We just ignore them, sometimes she’ll tic something funny, but other than that, we just take no notice. The less notice we take, the less self conscious she is, the less she tics. It can become a bit of a viscous circle - anxiety and stress makes the tics worse.

The tics have calmed to some extent. They’re never going away, but the less stressed and anxious she is about them, the calmer they are.

@Thelaughingtonepoliceman

Thanks for the update on your daughter. My son is also 12 and having tics. I’ve heard a specialist in tics confirm on the Tourette’s action website that they are often at their worst between 10 and 12 , hopefully that means there’s light at the end of the tunnel for our kids. Can I ask your counsellor says you can access the tic therapy? Is this on the NHS?