Sunday, 15 June 2014

I swear, its not funny

Today is Father’s Day. My son presented me with a handmade card with a lovely message, and then promptly ripped it up and threw it in my face. That’s because my son has Tourettes Syndrome.

That’s right, the funny condition that makes people swear – it’s hilarious isn’t it?

Perhaps the wits at Modern Toss could sit down and explain to my 9-year old how an inherited brain disorder that causes him such pain and anguish is funny?

Of course, I’m a hypocrite. Before I had a child with this disability I used to make casual jokes about Tourettes, because I was ignorant of the condition. Now I know that less than 10% of people with the genetic condition have the urge to randomly swear.  And those that do, find it a very distressing, and embarrassing tic.  Other tics are far more common – blinking, touching, jumping, and screeching, amongst many others. Everyone is different and tics come and go – twirling in circles this month many be replaced by touching the floor every few seconds.

Tics are symptoms of a disorder in the brain wiring. Many people have them to varying degrees, but when they occur in multiple forms and for over a year they can be diagnosed as Tourette’s Syndrome.

It has best been described to me in comparison with a sneeze – you know you are about to do it, can’t stop it and just need to get it out, and when you do there’s a feeling of relief.

In themselves most tics are harmless, but imagine how wearing it can be to be constantly blinking, touching, jumping, or screeching or worse, resisting the urge to do each of these.  It can be exhausting, frustrating and depressing, especially to a child who does not understand why these things are happening to them, and in the context of the school setting where differences are often cruelly seized upon.

Sufferers can suppress their tics, often for long periods – typically whilst in school or in the company of strangers. Indeed, it is not uncommon for family members or teachers to make comments like “he seems fine to me” or “there was nothing wrong with him today”.  But parents and siblings will tell a different story: when they are at home or in a ‘safe environment’ the tics that have been suppressed all day often come out with greater intensity.

Our son has so-called ‘rage episodes’. These are intense, ferocious, often frightening, violent eruptions that come like thunder in a blue sky, and can pass just as quickly – but often with the storm damage you might expect. It’s not just physical, but verbal too - the invective can be fierce. Punches are thrown, feet fly, rooms trashed, pain is inflicted. And just as suddenly it stops, and tears, contrition and self-loathing follows.

Tourette’s also often presents itself alongside other conditions.”The ‘rule of thumb’” according to Tourette’s expert Leslie E. Packer, “is that if the child has one disorder, they probably have symptoms of at least one other disorder as well”. OCD and ADHD are the most common ‘co-morbidities’.

These are all unpleasant conditions that cause great distress.  OCD is well known, but also misunderstood. “I’m a little bit OCD”, you often here people saying, but Obsessive Compulsive Disorder goes beyond being house proud; a compulsion to perform repetive tasks can debilitating. OCD also involves intrusive and distressing thought. For example,  “I think I’m going to burn the house down and kill my family”. These thoughts aren’t ‘real’, that is to say the people experiencing them will not carry out the action they are obsessively thinking about, however, they are frightening and bewildering. They provoke inevitable feelings of guilt and culpability: “I think I’m bad”.

Like any disability the sufferers are not at fault, their symptoms are not a reflection of character defects, they are the result of the way their brains are wired at birth. Indeed, while there are still very many gaps in the medical understanding of Tourette’s Syndrome, one-thing researchers think they know is that the part of the brain thought to be responsible for the condition, the basal ganglia, is some 10% smaller than in those who do not suffer from the disorder. 

As the Time to Change campaign has so brilliantly demonstrated, much of anguish caused by these brain conditions surround other people’s reactions to them.  Prejudice, at its heart, is about misunderstanding.

There is no ‘cure’ to Tourette’s. At a seminar in London yesterday afternoon I heard international expert Dr Douglas W Woods explain that around half of children with Tourettes the symptoms have either abated by the end of their teenage years, or they have learned to cope with them better.

As I write my son has just finished throwing gravel at me and is standing before me with a guitar singing “Daddy’s fat, I don’t like you, you hate me, I don’t love you”.

It is not the type of Father’s Day the greeting cards' industry leads you to expect, not even the ones produced by Modern Toss.

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