Coping with Tics & TS
I’ve frequently said that I am not an expert - I have a son with mild to moderate TS, and in addition, I have had very mild tics and less mild obsessive/compulsive behaviours for many years. I only came across the terms tics and Tourette Syndrome as little as a year ago - with any meaning anyway. Previously, as far as I was aware, TS was a rare affliction which resulted in compulsive swearing. How wrong I was. I say this, just to demonstrate the limitations of my knowledge and experience. What we did were “habits”. Our experience then is of mild TS. I do not wish to belittle the problems that others people can and do experience - some tics can be severe, debilitating, painful, and terribly embarrassing.
The following is what little I have learned from our own experience, and from the experience of others - mostly gained from those I’ve met via this site, or from the newsgroup alt.support.tourette and the TS forum at MGH. Both accessible from the Links page. I intend to only address the tics of TS on this page.
Ignore & Accept?
Referring to tics tends to make them worse. My son is often unaware of a tic - which he can be doing very frequently. On the occasions when I’ve mentioned it - it exaggerates them, and the tics seem to increase in frequency. Probably as a result of the stress of embarrassment. That is true to me too, and I probably have more control over my movements. Few people used to notice them - at least, they were rarely mentioned. Then I discovered my son had TS - and I realised I had symptoms too. I spoke about them, mostly with my colleagues. As a result, I get a lot of light-hearted teasing - now everyone notices them, and can even give me a running commentary. That makes me far more aware of them, and increases the chance that I “have” to do them.
At home, after the discovery of TS, we spoke a lot about TS, and much emphasis was put on it, and on the tics themselves. Now, we’ve calmed down a lot, and the tics are rarely mentioned. It’s just not a big issue anymore, although there are of course times, when the tics are more distressing and uncomfortable. Mostly though, they are simply accepted as what we do. Whether as a result or not, the tics appear to have decreased - but that may be the natural waning of TS. Certainly, stress levels have fallen, and I know that influences things.
So we tic. Ticcing is mostly OK. If it’s OK to tic, then stress comes down, and we tic less. Children with TS try hard to suppress tics at school - and indeed adults at work. Home then is the place where they can relax and let them go. Home is a free-to-tic zone. Block out the noises somehow - focus on something else. In the same way that you can de-sensitize yourself to other noises around you, you can come to, at least partly, ignore the tics.
At or after diagnosis, or learning about TS, we tend to focus on the tics. I certainly did. I watched, took notes, pointed them out to other family members (in the hope they’d believe me). I know now how terrible that feels, albeit on a lesser scale (my colleagues). Self-consciousness and embarrassment leads to attempts to suppress the tics, and more tension. That in turn, will lead to even more tics.
It’s important to see the person, the child, and not the tics. Build on their strengths and achievements, offer praise and encouragement, respect and unconditional love. Focus on who they are, rather than on what they do.
When a tic is obviously causing discomfort or distress, then acknowledge the tic and how they must be feeling. I don’t know - just a “is your neck getting sore?” sort of thing might do the trick. Give the person the opportunity to express their feelings, their anxieties, their pain.
Tics are often not a problem for the person ticcing. It becomes a problem when others react. It is the reaction and attitude of others which often cause the most distress. It may help to educate those people, but that’s not easy to do.
There are though, tics which are very uncomfortable, painful, distressing, embarrassing - and for which these measures are not enough. Some will interfere with activities of daily living. Consider medication if that is the case.
For someone with coprolalia - involuntary, compulsive spoken obscenties - others have found it helpful to substitute another word. For example “fake” or “shoot”. With copropraxia (obscene gestures) some are able to hide their gestures somehow - behind their backs or hidden under their other hand, or under a table.
I have a lot of hand movements, and I tend to stand with my hands behind my back, or sit on my hands. My son has a lot of facial tics and he will look down, look away, or put a hand in front of his face. I think it’s helped us that we have grown up with tics from early ages. I’m not sure how old I was, but my son was just 3. They are normal for him, and he’s come to accept them. For others, it must be far more difficult when a child is older and more aware, and a more sudden onset.
How many have been told “be careful - the wind will change, and you’ll be stuck like that forever”. There was a time when I believed it. Being called names such as nutter, weird, you’re crazy, or seemingly innocuous ones such as funny face, all leave their mark. Self-esteem can take a battering. (There are links on the Alternatives page which address issues such as Self-Esteem, Anxiety etc)
For us, learning about TS - the reason for why we do what we do, was so very important. It certainly lifted a burden, not only from me, but for my son too - to finally know why he does his “habits”. His confidence has grown as a result. He’s doing just fine, and I know he will do well in life - whatever the outcome of his TS. We have good reason to suspect that his tics will lessen or even disappear before adulthood. (See TS and Tic Disorders page)