Hear our stories
It can be a bit daunting when receiving a diagnosis of Tourette Syndrome – whether that be as a parent caring for a child with tics; or when getting diagnosed as a youth or an adult.
While the clinical definition is definitive, sometimes hearing or reading a ‘real-life’ story can answer the questions we have about “what is life like with Tourette Syndrome?”
With increasing awareness and support, young people and parents are now beginning to tell their stories in the hope that their experience resonates with someone else.
RIDING THE ROLLERCOASTER THAT IS TOURETTE SYNDROME
Our son’s paediatrician once told us that Tourettes is like a rollercoaster. How true that statement is.
Our son, born in 2009, was about four when he started becoming very violent and flapping a lot. It was my husband who said we need to get him to a doctor because something isn’t right (I think as a parent you don’t want to admit something’s wrong but I knew my husband was right).
We saw our GP who referred us on to the paediatrician. The first diagnosis came back as ODD. After a while we knew this wasn’t quite right and so had him re-tested and he was diagnosed as having ADHD and Anxiety. In some way it was a relief to finally put a name to what was going on.
It was at another appointment when the same paediatrician diagnosed him with Tourettes. He’d noticed a motor tic and asked us more about different things he does.
For us, it was a bit confusing as all we had seen or heard about TS was in a comedy movie once where a lady was swearing. We knew nothing at all about all the other stuff that comes with it.
The doctor was very helpful and gave us some information and over the years we have continued research and figure things out as we go.
Our son’s tics have come and gone over the last few years – some last longer than others and some don’t go away at all. He has been flapping and spinning for a while now. And also has the swearing tic and different thoughts that just come out. Unfortunately our younger kids, three and five, now have an extensive but not so great vocabulary and also copy some things – but that’s just life with TS.
He also has rage attacks where he can go from 0 – 100 in no time at all and sometimes without any warning. We have dealt with a lot of violence (you name what kind and we’ve had it) – especially towards me but quite often to my other kids (we have five altogether) and although rare, it has happened at school and also to random strangers.
We have also dealt with broken windows, siblings (and me) being threatened with knives and broken glass from when he smashed a window with a scooter and smashed doors and walls. He has also run away before (once from school). He doesn’t go very far but has bolted across the road without caring.
I have had to physically restrain him and stop driving to deal with violence and call my husband numerous times to come and help – so one of us can deal with him and one of us help the other kids. We were told this is part of TS and he just gets these things in his head and can’t control it, but all of a sudden it can stop and he is remorseful after. It’s like a big pot of TS/Anxiety/ADHD mixed together.
He doesn’t like having it and still struggles with it, and struggles with school sometimes too. We do have little moments of ‘gold’ though and progress. He went from not being able to play hockey last year to really enjoying it this year and doing very well. He is slowly learning better responses to his aggression.
We always tell him that just because he has all this going on doesn’t mean he can’t do things – and when he started saying it himself it was such a proud moment. We also let him know that he has taught us so much and that he can help others which he is excited about.
There are still close-minded people out there who don’t want to be educated about TS. But I am at a point now where that is their problem, not ours. We can do our best to try and help people.
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