Two of our three boys have tic disorders. For us, it’s nothing like in the comedy sketches with the funny inappropriate swearing (only a small proportion of people with tics will ever develop the swearing tic, proper name, ‘coprolalia’). In our family, it’s much more mundane. Mundane like someone who sniffs a lot, but actually, A LOT, like every few seconds.
Tic disorders are very common and vary enormously in severity. One in five school children has tics and sometimes their parents aren’t even aware (“Why are you doing that thing with your mouth?”, “Stop tapping please!”). Most will grow out of them within a year. But some of course don’t – one in 100 adults has chronic tics, and it is more commonly diagnosed in males than females.
There are many families who have much more involved journeys and who have written beautifully and eloquently about their experiences. There is a new generation of people (Billie Eilish, David Beckham, Norway’s entry in this year’s Eurovision who even goes by the name 'Tix') who own their tics, and some brilliant brave teen TikTokers who share their stories. So I’m not claiming any special drama or unique insights when it comes to life with tic disorders – you can go and google them. But for what it’s worth, here are my reflections on what I have learnt through parenting my own precious tic-ers, and what it teaches me about compassion in general.
1) Tics are barometers.
Doctors talk about how tics wax and wane – they come and go and then a new one comes along or overlaps, or you can have a period with no tics and then wham! a whole cluster of them. It can look pretty random, and maybe partly it is. But something we are slowly learning, is how to read the tics and what they are telling us. Tics are often linked to being tired or excited or anxious; tics can be exacerbated by certain activities, like looking at screens; or by diet, or stimulants like caffeine; or by environment – many people feel more free to experiences their tics at home. An important part of learning to live with tics is identifying the triggers and then being able to perhaps exercise some control over the pattern or severity of tics.
But alongside that is the revelation that tics are a barometer for my own heart. In the past, I’ve found tics annoying: “If you want to make the noise, can you please go somewhere else!”, “Can you please try to use a tissue!” That points to my heart being irritable. My sons have no control over their tics but I have a large amount of control over my attitude, and sometimes, my attitude is rubbish.
A few years ago we went to stay with my cousin, who has three children of a similar age. The six children under six had a whale of a time and enjoyed being piled into baths and bedrooms together. One morning, my youngest woke at 5am and so I grabbed him and took him downstairs as quickly as possible to try to nurse him back to sleep before he woke up everyone else. Unfortunately, he had already woken a brother, who immediately started non-stop clearing his throat. Also VERY unfortunately, the baby monitor in this bedroom picked up the noise and made it echo loudly round the downstairs. I tried and failed to find the receiver to switch it off (it was hidden in the kitchen). For two hours I listened to the throat clearing, amplified, reverberating, and grating, and when everyone else came downstairs at 7am I was almost in tears, ready to claw my own skin off to make the noise stop. My husband’s response as I threw the baby at him and stomped back up to bed was, “Try not to let it bother you so much.” I could have killed him, but he was right. That reaction reveals my fractious mood and resentful attitude. The problem isn’t the tics – it’s my response.
Where would I prefer my inner barometer to point? To love and compassion and understanding. My poor older boy had lain there for two hours, compelled to continuously clear his throat (lots of people with tics describe it as an itch you just can’t ignore), trying his best to be quiet and still in a room full of other children. How proud of him I should be, and how much I should love him, quirks and all. What an amazing resilient and tolerant person he should no doubt grow up to be. It’s a really hard shift to make in my thinking, and I know I don’t always get it right, but I’m certainly getting better. I think time and acceptance and reading testimonies of people with tic disorders helps enormously.
So tonight, when one of my sons cuddled up with me for a bedtime story and started burping repeatedly in my ear, and I cringed and my inner voice wanted to say, “Could you just try not to do that?”, I saw that the tics were pointing to two things: one, my son is tired and in fact a bit under the weather which always makes the tics worse and so I need to be extra gentle with him; and two, I am feeling grumpy, and I need to repent of the attitude which is choosing to be irritated by my circumstances.
2) Tics are not the problem; people’s responses are.
The tics themselves are generally not harmful. I understand that if you flick your eyes or bob your head often enough it will become sore and irritating, but in this house so far we’ve thankfully had none of the more painful tics, like scratching or hitting yourself. So people are best just left to experience their tics, and feel relief each time they perform a tic. Apparently, it’s like the feeling when you’re trying to hold back a sneeze or trying not to blink, and then it instantly feels better when you do it.
No, tics are not a problem, but trying not to tic is a problem. Like, if all you are thinking about is holding back the next tic, trying to suppress the building feeling, how can you possibly properly function and focus on other things?
And no, tics are not a problem, but people’s reactions can be a problem. The request to apologise, the look of disgust, the plea to move or stop. That is apparently what is most damaging to people who have tics. It causes embarrassment, and the desire to try to suppress tics, which is painful.
So yes, we can try to manage tics, but what we really need to manage is people. And yes, that includes educating people in our circle about tics, but short of walking around with a big placard saying, “My boys have tics – just ignore it.” (which I know some awesome parents have pretty much resorted to doing – there are T-shirts and everything) you can’t expect everyone with whom they come in contact to realise that. So what we need to teach more generally is compassion and tolerance about any sort of quirk. I know a little bit about tics now but there are zillions of other things that I know nothing about which I now see could lead to me responding to people in a way which is unkind or unhelpful. I look back on my earlier years in teaching and feel so sad for all the times I told off a wriggly child instead of finding ways to accommodate their sensory needs, or the impatience I showed towards those who find it harder to communicate or focus. They're just people, being themselves, afterall.
I am coming to the conclusion that diagnoses and labels are almost irrelevant (helpful to the individual and to the parent, yes, in helping them understand their situation and in accessing support, but less helpful to the rest of the world). Besides, getting a diagnosis can be a bit like a rugby scrum where the most persistent and well-read parents get the label and wave it victoriously. Regardless of whether someone merits a label, that person is still an individual, with their own quirks and needs, and that is why the default response to anyone should be love and tolerance and compassion. I have a choice to make about how I respond to a person, and having children with tics has highlighted to me how crucial it is that my baseline response should be to respect people and not to respond with annoyance or hostility if the way they present does not fit my view of how people ought to behave.
So, if I could wave a magic wand and make their tics stop, would I? Well, for their sakes, obviously yes. But parenting tic-ers makes me a more tolerant teacher and person, and that is worth plenty. I don't want to waste this lesson in learning to love.
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