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.

My life with Tourette Syndrome by James.

My name is James and I am 10-years old. I was diagnosed with Tourette Syndrome in November 2018 but I have been ticcing for as long as I can remember, back to maybe age five.
I don’t like having Tourette’s because it affects every thing I do but it is a part of who I am. Some of my tics are slamming plates on the dinner table, stretching my mouth, flicking walls, blinking lots, stretching my neck, coughing, breathing loud, snorting & clearing my throat. These tics sometimes take my concentration away which really annoys me especially at school. My tics also affect other people as I sometimes distract them from their school-work and this makes me feel bad. It also makes me feel bad when other kids stare at me at school and sometimes adults in the community. I feel like I am doing something wrong and attracting attention that I don’t want. My tics come and go all the time and often change. I have good days where it feels like I don’t tic much and bad days where all I do is tic. Sometimes tics can be painful at the start because my body is not use to them. I
really enjoy doing sports because it distracts me from ticcing. It makes me feel good because I don’t need to tic as much. My tics get worse when I am anxious or nervous about something and also sometimes when I am excited about something
I love going to Camp Twitch cos it makes me feel normal. I don’t have to hold my tics in and people
don’t stare at me when I am ticcing because everyone is doing it
I would really like it if people didn’t stare at me, or didn’t pay any attention to me if I’m ticcing or
having a tic attack.

Raising a child with Tourette Syndrome by Hayley

My name is Hayley and my son James is 10 years old. He was officially diagnosed with Tourette Syndrome November 2018. He has been ticcing since he was about 3.5 years old although at the time we had no idea that what he was doing was ticcing.

As a small child he used to blink lots, cough and clear his throat loudly and sniff all the time.  We never suspected that these were anything unusual because when you look at them individually they don’t seem like anything.  We had a few incidents at pre-school where he would do something impulsive and hit other children or get a bit rough with them.  Again we didn’t really think anything was wrong – rather we put it down to him being the oldest in the group and being ready for a new challenge that school would bring.  How wrong we were.

James had been going to daycare/pre-school since he was a year old so being away from me was nothing new to him.

When he started school though everything went backwards.  He was constantly getting into trouble as he was disruptive in class, he was doing very impulsive/ naughty things in class and at playtime/lunchtime.  I was constantly having meetings with the class teacher and deputy principal, coming up with plans on how to deal with his behaviour etc.

Just after James turned six he was playing outside with his uncle kicking a rugby ball around.  My brother (James’s uncle) came inside and asked me what was wrong with James.  I of course had no idea what he was talking about and he explained that James was ‘nodding’ his head heaps.  We kept an eye on him for the rest of the weekend and the nodding only got worse and more violent.  I was seven months pregnant at the time with a risky pregnancy and now my son seemed to be ‘losing it.’

I took him to the doctor first thing Monday morning dreaming up every scenario possible, never once contemplating Tourette’s.  It was to be the start of a very long and frustrating journey for us.  Our GP told us he didn’t believe it was anything to worry about but told us to keep a diary of everything ‘weird’ that James did.

So we did.  We took videos, I wrote everything down that was strange and talked to all my family wondering what they had noticed.  A few months later we went back to the doctor with all our ammo and he decided to refer us on.  For about three months our referral was passed between two services as neither one actually dealt with our presenting symptoms.

Finally one decided to take us on.  What a disaster and a complete waste of time it was.  We managed to see a psychologist who preceded to tell me that all my son’s problems were caused by me as I was a terrible mother and should know better.

He even tried to enrol us in services that worked with vulnerable families.  I didn’t take well to this (I’m pleased that I am a strong person) and demanded a transfer to a different area.  This also wasn’t very successful.  After many hours, meetings, time out of school for James, screens for ADHD, OCD, ODD, Depression, Anxiety (you name it we were tested for it).

We were discharged from the service with the official ‘diagnosis’ that it was “just something he will grow out of” and I was made to feel like I was ‘just a mum’ and don’t know what I was talking about.

While we were waiting for the transfer between services I managed to get the Ministry of Education involved and get an assessment done by them.  They carried out a very comprehensive assessment and agreed that James definitely had something going on and given his history came to the conclusion that he quite possibly meet the diagnosis criteria for Tourette Syndrome.  Unfortunately the Ministry of Education staff couldn’t make that an official diagnosis because it had to come from a medical professional.

Fairly early on in the process I happened to be watching a program on tv one night about Tourette Syndrome.  It pointed out lots of the symptoms and nearly every time I mentally ticked the box for James.  He met so many of the indicators that they were talking about – it felt like I had a huge light bulb moment.  My parents happened to be watching the same program and rang me straight away to say they thought that James might have Tourette’s.

This was the first time that I felt like we actually had a name for everything he did.  It also made me reflect on all the weird things he did when he was much younger and helped me draw a bigger picture.  Unfortunately that didn’t help me with the service we were dealing with at the time because I “didn’t know what I was talking about”.

Finally I went into our GP and demanded a referral to a paediatrician.  It took about three months to get into see one.  I went in with all my evidence (diary, videos, assessments) and ready for a fight.  I wanted to be listened to and taken seriously.  I’m not ‘just a mum’ and I know my child better than anyone else.  We literally spent 20 minutes in the office with the paediatrician, she took on board everything I said, did a few little tests and told us that, yes James did meet the criteria for Tourette Syndrome.  At last I felt validated and we could finally get some support for James and our family.

James’s tics are not considered bad on the grand scale but that does not mean it doesn’t affect his daily life as well as our family life.  We, like any family have good days and bad days, it’s just that our bad days are extremely overwhelming for all involved and often everyone goes to bed exhausted and irritated.  We know that James can’t help what he does and accept him for who he is but it can also feel like it’s one step forward and a million steps back.  Simple tasks like eating breakfast or dinner, packing school bags, getting ready for school or any other activity feel like a constant battle where you achieve nothing and as frustrating as it is for me it’s a million times worse for James.
Tourette’s sucks!!! There is no nice way to put it but it can also at times be hilarious and very rewarding achieving the simple things.

This will not break us and we will become stronger.