I hope you can help me with my son who has tics and Tourette’s syndrome. His tics wax and wane constantly. Some are ones only we as parents would notice; others are sporadic, sudden and obvious. He has adapted well and, luckily, he gets the verbal tics for only a few weeks every three to four months. However, he hates them, and they are the type of tics that cannot be “hidden”. In short, he has mainly motor and verbal tics intermittently daily.
At 10 years old he is doing his best to manage but he would now like help. We have been to a number of professionals, but this has been very frustrating as they all suggest finding someone qualified and specialised in the area but have no contacts or knowledge of who exactly we should contact.Having done
Having done extensive research myself, it seems habit reversal therapy would be the best therapy for him, but finding someone experienced in this and working with Tourette’s in Ireland seems impossible.
Some people have suggested medication but this is really the last resort for extreme cases. My son does not need medication (antipsychotics and such) as he is a normal, healthy, happy, well- balanced, popular boy. The problem is I can’t find a child professional in Ireland to help us.
I understand your frustration in trying to find a qualified professional to help you and your son. There are relatively few therapists in Ireland who are trained in behavioural techniques such as habit reversal therapy and fewer still who have direct experience of working with young people who have Tourette’s syndrome.
One option might be to consider getting your son help via telemedicine or Skype. The excellent support charity, Tourettes Action based in the UK, has a list of qualified and experienced behaviour therapists, many of whom offer therapy to young people and their families via Skype. The charity also has extensive information on these options on its website (tourettes- action.org.uk) and has a helpline you can ring to consult further.
Another option is to persist in finding a child mental health professional who lives near you. Even if they do not have specific training in working with Tourette’s, a good child therapist who has some experience of behaviour techniques and doing structured programmes with children should be able to help you.
Tourettes Action also provides training, support, resources and supervision to professionals who want to work with children in this way. Either way, I would suggest you put your son on the waiting list for your local child and adolescent mental health (CAMHS) service, which is the designated service to provide support for young people with Tourette’s syndrome.
Helping your son directly yourself
It is also possible that as a parent you could coach your son in developing techniques to manage his tics. Indeed, there is growing evidence to show that supporting parents to teach children cognitive behavioural techniques can be just as effective as professionals doing it.
Tourettes Action provides training and resources to parents who wish to do this. It has a parent-training workshop in July in Belfast that you may wish to attend. In addition, if you search online there are a number of parent workbooks and child- centred protocols that are relatively easy to follow.
Coaching your son is a valid option particularly as he is motivated and now asking for help and, at 10 years old, he should be able to understand many of the techniques that can work such as those outlined below.
Habit reversal therapy
Habit reversal therapy (HRT) centres on helping your son become aware of how a tic develops in his body by noticing the physical tension just before a tic happens and then learning to carry out a competing physical behaviour that might block the tic being expressed. For example, instead of his verbal tic, he might learn to clench his jaw or to close his mouth and breathe deeply.
Learning these new competing behaviours takes a lot of time and patience though with practise he can make progress. From your question it sounds like he is already employing similar tactics to hide some of his tics so it would be a case of building on what he knows already.
Make a list of all the tactics he currently employs and then brainstorm new ones he can try, particularly for the tics that are harder to hide. As a parent, the important thing is to keep him motivated and to reward all the effort he puts in.
Mindfulness and relaxation
Often it is the first step of becoming aware of the development of a tic that is the hardest. You can teach your son the skills of mindfulness by practising exercises such as mindfully noticing his breathing or doing a “body scan” where he notices the different sensations in his body.
Learning mindfulness in this way is also inherently relaxing and can help reduce the tension that causes some of the tics your son experiences. You can also teach your son other body-based relaxation techniques such as yoga, progressive muscular relaxation, positive visualisation or even physical exercise, all of which could help him relax and manage the tension in his body.
Managing trigger situations
Frequently, there are particular trigger situations for young people with Tourette’s such as stressful situations or particular social situations. Identify all these trigger situations with your son and then explore the different strategies he can employ to manage them. For example, if he is in a stressful situation that might bring on a bout of tics, he might be able to arrange to take a break or step out for a minute.
It is also useful to discuss how he might talk to others about the tics and what is happening for him in a way that they can understand. There are a number of good online support groups and stories of how young people cope that might be worth reading with him when you think he is ready.
John Sharry, Irish Times Newspaper, April 2016. John writes in the Irish Times Health+ every Tuesday.
For information on John’s courses for parents visit www.solutiontalk.ie