Tuesday, June 25, 2013

Labels, and why I like them

Yesterday we had an epic - but also minor - family adventure. Epic because on the face of it something very important happened. Minor because it does not affect our family life in any meaningful way. Life will carry on at home much as it did before. But a new label has come into our lives, and we are very pleased to welcome it onboard.

What happened was that my ten year old son was diagnosed with Tourette Syndrome.

As a family, we have known for the past three years that Dylan has Tourette's. You can't live with someone with this syndrome and NOT KNOW.

"It would be hard to imagine a less likely troublemaker."

But although he already had a diagnosis of autism and ADHD, like his twin brother, the only concession to this further condition was a side note on his file that Dylan has 'tics'. Tic Disorder is a milder and more general condition than Tourette's, and usually of shorter duration - though medical opinions vary. In particular, Tic Disorder is fairly common in schools, with as many as 1 in 100 children showing possible symptoms.

So yesterday we took our son to yet another consultant at yet another hospital for yet another opinion, and FINALLY, after speaking to him for fifteen minutes, this new consultant pronounced it Tourette Syndrome.

But why is this a good thing?

Isn't Tourette Syndrome just another problematic life-long label, like ADHD and autism, to be hanging about our son's neck at the tender age of 10?

In some ways, yes. But the truly vital thing is the timing of this diagnosis, rather than its significance in general. Because a diagnosis makes no difference to his condition. There is no cure for Tourette's. There is no particular treatment, though some doctors believe in medication to alleviate symptoms. (We are not keen on medication, having already gone down that route in the past and disliking the side effects.) It may last his whole life, it may go away on its own, it may make his teen years a living hell.

"There's a word for what he does, and that word means he is not to blame."

But when he starts secondary school this September, his new teachers will be handed a file detailing his special needs, and now the tag Tourette Syndrome will feature on it. And when he tosses his head violently twenty-five times in a lesson, or makes a repeated high-pitched noise like dry windowscreen-wipers throughout his school assembly, he will not be singled out for punishment. Or if he is, we will be able to object on the grounds of this official diagnosis.

And when you have a child who, from the age of five, was humiliated and made to sit apart from the rest of the class for 'wilful disobedience', for an inability to sit still or work quietly, for making funny faces or noises when the teacher was in full flow, to be able to point to a diagnosis that completely explains his behaviour is a miracle.

Let's be clear about this. My son has moments of naughtiness, like every child, but on the whole he is well-behaved. We will not be treating this label as an excuse for genuinely rude or disruptive behaviour. Though it would be hard to imagine a less likely 'troublemaker'. My son is excruciatingly polite to adults, a favourite with the teachers at his new (more relaxed) village school, and marvellously intelligent, enquiring and eloquent. People remark on it everywhere we go, often with amazed expressions at his responses.

But Dylan also has these other difficult conditions that mean he sometimes misreads non-verbal signals, or prefers his own company to playing with peers, or can't sit still for longer than thirty seconds and will rock violently if forced to do so, or can't help repeatedly making odd squeaking and sniffing noises - often at the most embarrassing moments for him.

So that is why I like labels. Because this particular label will save my son from being labelled a troublemaker at his new secondary school, and help him to concentrate on his school work without worrying about being excluded for 'disobedience'.

I know many people hate labels - especially for long-term issues like this - and would prefer not to be stuck with them. But labels that save our children from being discriminated against are nothing short of fantastic.

And Dylan himself, having seen other kids with Tourette's on Youtube and knowing - absolutely knowing - that he has the condition too, is very pleased with his diagnosis. There's a word for what he does, and that word means he is not to blame. When you're a born people-pleaser, and you've been consistently blamed for things you can't control since you were old enough to sense the irritation and disapproval of your teachers, the sense of liberation and relief that accompany such a realisation cannot be overstated.

So thank you, Monsieur de la Tourette.

For those interested in knowing more about the syndrome, here is an extreme case of Tourette's on the This Morning show.

4 comments:

Michelle Styles said...

Hooray that Dylan has a proper label and you can be a velvet bulldozer on his behalf.

renaissancewoman said...

Used to be the same with dyslexics, Jane , told they were slow and/or stupid when obviously not, which of course led to behavioural difficulties and school phobia - most enlightened schools and teachers do understand all too well but have to fight a system that, increasingly, cares for measurement rather than growth - and growth being related to the individual concerned not some external notion imposed on all x- year olds. Why we, as a society, don't care very well for the unusual among us (often also the most gifted) is a sad reflection on our wealthy country that seems to care more for waging war than the caring professions. I do hope you and your family find a good way forward.

Poetry Pleases! said...

Dear Jane

Congratulations to Dylan on his shiny new French label. We hope that it helps him and you and Steve navigate and negotiate the years ahead. Sad news about Salt!

Best wishes from Simon & Rusty

Poetry Pleases! said...

Dear Jane

Congratulations to Dylan on his shiny new French label. We hope that it helps him and you and Steve navigate and negotiate the years ahead. (Sad news about Salt!)

Best wishes from Simon & Rusty