TS and me: My journey as a parent

Posted Mon 24th May 2021 at 08:20
by Mia Scally

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This blog intends to set out some of my experiences as a parent of a child with Tourette’s Syndrome. This doesn’t reflect every parent’s experience – just my own.

Manifestation

My daughter Isabelle developed complex motor and vocal tics within the space of a few weeks over the summer when she was 12. She had some minor tics prior to this but nothing near what developed very suddenly mid-August of 2020.

Isabelle went from some simple motor tics to experiencing painful head jerking almost overnight. This then developed over the course of a few weeks to include: coprolalia; echolalia; legs giving way; stabbing herself with cutlery; sitting on the pavement or middle of the road (puddles appeared to be a speciality); vocal tics that said things like ‘I’ve got a bomb!’, ‘my mum is a prostitute!’, and my personal favourite during a global pandemic, ‘I have coronavirus!’

Coping with symptoms

Isabelle was already under the care of CAMHS and so we received a diagnosis in 2021 – quicker than most I would say. Whilst this was beneficial, a diagnosis doesn’t help either of us understand the condition or work out how to manage it. For example, what are the impacts of taking paracetamol for the pain on a consistent basis? Isabelle tried medication for a short while (Clonidine) but swiftly came off it saying she didn’t feel like herself, and in reality it didn’t really help reduce some of her more severe tics – just the frequency of tics throughout the day. This left us both at a standstill.

We joined support groups on Facebook, met other people with TS, and researched the topic as much as possible, making good use of the Tourette’s Action website and resources on offer.

Despite this I still felt shell shocked as a parent. What happened to my child to cause this? Did I do something wrong? How could I help? And I’m embarrassed to say that getting those extra looks out in public made me feel somewhat uncomfortable. But mostly I was overwhelmed with anxiety and fear for Isabelle. Would this make her more vulnerable out in public? Would she be targeted? I still don’t have the answer to many of these questions, or at least not answers that satisfy me, but I have come some way from the beginning of this journey.

Below are some of my thoughts and experiences on some of the challenges I have faced (Isabelle obviously deals with so much more than I will ever have to but it doesn’t mean our journey as parents is smooth sailing!)

Independence

It can be really difficult to let Isabelle be independent when she has such complex tics.

I worry that she will fall, she will be hit by a car, or a police officer/member of the public will misinterpret her tics. Isabelle also has ADHD and Autism alongside TS. We now have an Autism ID Card and are in the process of applying for a Tourette’s Action ID Card. The Autism ID Card, for example, links to policing services so that they are aware of the condition and that Isabelle has it, with notes on how to help her should they come across her. This way, Isabelle can carry these in a lanyard and if anything should happen, people will not only know who to contact, but emergency services will also (hopefully) be better informed of how to help Isabelle. Isabelle feels much safer and I feel less anxious about her being out and about with friends. I still make sure Isabelle stays local and that anyone she is going out with is a trusted friend and knows about her conditions. Isabelle is fine with this, but other teenagers might not be! This is simply what works for us.

Social anxiety

When Isabelle’s complex tics first developed, we didn’t know what to expect. We carried on our daily lives as normal and just took it all as it came. I remember one day suggesting a walk in town. Isabelle had been feeling uncomfortable with the looks and stares, particularly when people spoke to her as though she was a toddler because they didn’t understand this was a neurological condition. By going together, I could give her some support and (secretly give people a look that said ‘back off’ ha ha – I’m a bit of a lion when it comes to my children).

We went to a coffee shop that we visit frequently, ordered our drinks and some food and waited outside for the food to be ready. Within seconds of being outside Isabelle hurled her drink across the floor (motor tic). She was mortified. Everyone stared. She calmly went to get the cup and put it in the bin and I reassured her that everything was fine. Stupidly, thinking that tic was out of the way for now, I asked her to hold my drink while I dug my keys out of my bag. Mistake. It ended up on the floor as well. I picked it up, put it in the bin and told Isabelle, ‘It doesn’t matter love. I can just get another one. It happens’. Inside I was crying. Everyone was staring once again and I just felt so terrible for Isabelle. This was hard enough for her without people looking. But they only stared for a second and then went on their way. To me it felt like a lifetime. I can’t even imagine how it felt for Isabelle. She started crying, overwhelmed with frustration that she couldn’t even have a drink anymore.

Fast forward to now, we go out for drinks often. Isabelle uses a reusable cup that is harder to open if dropped or thrown, and she can feel if this tic is coming on (most of the time). I then just grab her drink till it passes. I don’t even notice the stares anymore and Isabelle has given up caring! Let them stare! In reality, it isn’t malicious. I’m sure I would look over if someone threw something on the floor. We just carry on with our day. Even the vocal tics like ‘my mum is a prostitute’ don’t bother me – I laugh and say ‘not today sweetheart’. We still both feel anxious time to time but we’ve gotten used to the tics that Isabelle has and we’ve learned to accept that this is just part of her now, and frankly it adds a bit of colour to my life. The bit I still struggle with is the pain.

Impact and consequences

Isabelle commonly experiences pain in her legs and neck from the tics. She prefers not to take medication, including paracetamol, and just manage the symptoms as best she can. Hot baths can be a real saviour here! I don’t know how she does it. I really don’t.

But I am so proud of her for how she has tackled this journey. She has not let anything get her down. In fact, I’d say she is more vibrant and confident now than she has ever been! She owns the TS – it doesn’t own her. However, as a parent I worry for her. Will she always feel this pain? And what about the future? Will she be able to drive? Probably not. Will she be able to get the jobs that she wants? Or will people discriminate? We don’t live in a perfect world. My heart hurts for everything she has to deal with at such a young age and the challenges she will face for the rest of her life. But I know she has the strength to face whatever comes her way.

When the pain gets too much, she asks for paracetamol. When she has worries, we talk about them. She has taken control and knows what is best for her. I am simply here to support and facilitate. I have learnt to trust Isabelle and her instincts (whilst hovering just in case it doesn’t work out, I’m sure).

I have spoken to other parents and adults with TS who live their life just fine! And this reassures me. The anxiety will never completely go away, and sometimes we have the most horrendous days where I’m exhausted and frustrated and we argue. But we get back on the same page eventually. It is a challenge, and my protective instincts are always up.

It can be exhausting constantly making sure that the house is safe, Isabelle is safe, the world outside is safe! But I’m learning. Slower than Isabelle, but I’m getting there. I just wish that CAMHS and the NHS came with more information and more support for parents and young people.

I don’t know about your experiences, but we did feel very much left to it! This is your life changing condition and diagnosis – off you go now!

Where are we now?

Isabelle now uses a walking stick to cope with the pain in her legs and to stop from falling when walking, and we are owner-training an assistance dog (Oatley) to help Isabelle deal with some of the symptoms and be able to live more independently.

Oatley is being trained to provide deep pressure therapy (this can help with anxiety, tic attacks, and more), to help Isabelle cross roads safely (particularly as she can sometimes sit or stand in the middle of the road), and to retrieve things that she has dropped when she is in pain (amongst other tasks). We have a brilliant trainer (Dog Matters in Buckinghamshire) to support us and I’m confident that Isabelle will be able to live a confident and independent life with her little companion by her side.

We are both still learning – it hasn’t been that long! But the shock is wearing off... and cuddles from Oatley certainly help! If you want to follow our journey with Oatley, we have a facebook (@oatleybelle) and Instagram page (@oatley_belle). We use it to talk about Isabelle’s TS, Oatley’s training and to provide some resources for others walking in our shoes.

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