For When Your Teacher Needs It

When I was twelve I threw a basketball into my PE teacher’s face. The whole class had been told not to touch the balls, but to my horror I did just that: I picked up the ball and hurled it hard into his face. Over two decades later I can still remember the shock I felt at my own behaviour, my fear at this loss of control, and the rage on my teacher’s face as he ordered me out of the gym.

But I also remember something else, something I valued then, but which now, as an adult, I respect even more deeply. My teacher asked me why I’d thrown the ball, and when I told him that it had, ‘just happened’ he believed me. His trust, in the face of personal humiliation, has stayed with me ever since.

While I didn’t have a diagnosis of Tourettes back then, I did have other diagnoses and behaved in unusual ways. I was generally well supported at school and many of my teachers seemed very well tuned to what I needed. For example, I now know that the many errands I was sent on were actually much needed movement breaks, and that the extra teachers and students round the trampoline were there to manage the extra risk when I was on it.

Many children with Tourettes don’t always get the understanding and support they need. This isn’t usually deliberate, but stems from the complexity of the condition, and the many pressures teachers and support staff face in the classroom.

Tourettes can be a confusing condition to navigate. For a teacher encountering it their classroom for the first time I imagine it must be very tricky to know how to respond. But how children are supported at school has a big impact, not just on their education but also on how they feel about themselves as they get older.

The rest of this post is a letter to the teachers of children with tics.

dear-teacher

Dear Teacher,

You already know that Tourettes is characterised by involuntary movements and noises called tics, and that only 10% of people with the condition swear.

You might have read a factsheet or done some research online, but it’s quite likely the dry descriptions of Tourettes you’ve read don’t match what you see in your classroom.

It was years before I found Tourettes described in a way that I recognised – it came from the Oxford Handbook of Clinical Medicine. This describes Tourettes as:

Irrepressible, explosive, occasionally obscene verbal ejaculations.’

It goes on:

There may a be witty, innovatory, phantasmagoric picture, with mimicry, antics, playfulness, extravagance, impudence, audacity, dramatizations, surreal associations, uninhibited affect.’

Tourettes is a complex neurological condition. It affects each person differently and will wax and wane in the course of a person’s life. In fact tics will often do this within the course of a single day.

This letter’s unlikely to answer all your questions or save you from finding Tourettes baffling. But I hope it gives you some pointers, and helps you understand a little better what might be happening for the child in your classroom.

I’ll start by sharing a few aspects of Tourettes that people without tics are unlikely to think about.

Tics are Uncomfortable
Tics often have a strong physical sensation associated with them. People with Tourettes describe this in different ways, some likening it to an itch, others to a burn, and some experiencing it as a pressure that needs to be released. What everyone’s clear about is that it’s uncomfortable. Children with Tourettes usually start being able to recognise and describe this sensation at about ten, but their ability to do this is likely to depend on other factors too. The child in your classroom might not be able to describe the discomfort or pain they’re in but please take this in to consideration anyway.

You Can’t Always See Tics
Just because you can’t see tics doesn’t mean they aren’t happening. I’ve got lots of very noticeable tics, but some of the most distracting are tiny movements that other people would never pick up on.

Lots of people with Tourettes have the ability to suppress their tics. This varies from person to person but it nearly always takes a lot of energy and concentration to achieve. I often describe this as being like holding in a blink – you can do it for a little while, but you can’t really do anything else at the same time. It’s not uncommon for children to hold their tics in at school and then tic more intensely at home. If a parent or carer describes this, do listen and take it seriously.

Lots of people with tics develop strategies to hide or disguise their tics. As a child I used to save tics up and then let them go in the bathroom. I would also sit on my legs in a way that would give me pins and needles just so I could feel a different sensation other than the need to move. All of this requires energy, and takes your attention away from whatever’s being taught.

Environmental Tics & Impulse Control
While most of my tics bear no relation to where I am or what I’m doing, some do. I describe these tics as environmental because they’re triggered by what’s going on around me. This can sometimes involve doing the worst thing possible in any given situation – like throwing a ball into a teacher’s face.

Most people seeing a hot ring on the hob will think ‘I must be careful not to touch that’. But my brain sends the opposite message and I reach out for the flame. This process is instant and uncontrollable. It causes problems with knives, candles and roads for instance. This sort of behaviour looks odd and is obviously dangerous. But I manage the risks by making the physical changes needed to keep me safe.

Environmental vocal tics can present a big challenge too. I might say something that refers to someone’s personal characteristics, such as their weight, gender or race.

It’s crucial that environmental or insulting tics are recognised for what they are – involuntary and not deliberate. Of course it’s easy to say ‘Don’t take it personally’ but this is much harder in the heat of the moment.

Because there can be an oppositional aspect to some tics, the way you present information to a person with Tourettes can make a difference to how safely or appropriately they respond.

A few years ago I took a group of young people with Tourettes go-karting. The instructor told one boy that he shouldn’t put his foot on the brake pedal. He repeated this instruction several times, but the result was that the boy immediately started putting his foot on the brake. Had the instructor focussed on what the boy should do, this problem would probably not have arisen.

I’m going to share three ideas that have become central to my work with children, along with some practical ways they could be implemented in the classroom.

Create a Space Where Children Feel Safe to be Themselves
As a teacher the richness and beauty of difference is probably something you understand instinctively. You probably see students learning about themselves, or how to respond to things that make them feel different all the time. People with Tourettes often feel under pressure to hide their condition or to think their tics are seen as a problem or a nuisance. You have a really exciting opportunity to reframe this and make sure children are confident in who they are.

Practical ways you can do this include:

1) Offering a way the student can quickly and simply indicate that they need a break to move, tic or be outside the classroom.
2) Helping the child’s peers to understand Tourettes – many children have found doing a presentation to their class very useful. Tourettes Action has presentations for all age groups that you can download here.
3) Empathy – if you see a child struggling with their tics, talk to them about Tourettes and help them develop the language to describe what’s happening or what they need. Being able to explain their tics with confidence is likely to have a big impact on their life and the opportunities open to them, and as a teacher you’re really well placed to build these skills.
4) Finally, look for opportunities to represent difference positively, and challenge the destructive idea of ‘normal’. For older children and teenagers Francesca Martinez’s excellent book ‘What the F**k is Normal’ is a good place to start.

Be Ready to Adjust
I’m sure you’re acutely aware that educational equality isn’t about treating all children exactly the same – it involves recognising that everyone is different and providing the support each child needs to have an equal chance to learn and thrive.

To create truly inclusive environments we have to be ready to adapt, whether that means adjusting the physical environment, the sensory landscape, the way we communicate, or the rules.

In practice this might mean:

1) Creating a space where children with tics can go to if they need it. Wherever I work we create a quiet space with soft cushions that I can go to if my tics intensify.
2) Allowing a child to wear ear defenders in class to support their concentration and manage sensory stimulation.
3) Giving instructions that focus on what should be done rather than concentrating on the ‘don’ts’
4) Adjusting rules as necessary to accommodate a child’s specific needs. This might include allowing an adjustment to uniform because of sensory sensitivities or understanding that being attentive can look different for someone with Tourettes.

Teach new skills and nurture confidence
At a conference a few years ago I met a man with Tourettes whose tics were barely noticeable. But, as we talked, I got the sense that the negative reactions he’d experienced while growing up had severely impacted on his confidence. He’d learnt to expect that other people would respond negatively towards him, and this expectation seemed to be restricting his life.

Damage to confidence is always harder to undo than it is to prevent. I think that strengthening the confidence and resilience of disabled people, particularly children, has the power to create significant social change.

Creating positive memories for children with Tourettes is crucial because these are protective in the future. I know first hand the value of having positive experiences to draw on when times are tough.

As a teacher, building skills and nurturing potential is what you do. For a young person with Tourettes this could mean:
1) Looking for ways to support them to feel confident in explaining their tics. This could involve working on a document to share with other staff, or practicing set answers to frequently asked questions.
2) Identifying and strengthening their self-management strategies. This could include working on relaxation techniques or how to communicate a concern or worry in a positive way. This doesn’t mean expecting them to tic less but helping them find approaches to manage the physical or social impact of their tics.
3) Finding opportunities to build their confidence. This could be through giving them a specific role or responsibility, or developing a talent or strength.
4) Teaching everyone about the Social Model of Disability and modelling inclusive approaches.

Finally here are my brief answers to some of the specific questions I’ve heard teachers ask:

How should I respond to tics?
Tics can look very unusual, especially if you haven’t met someone with Tourettes before. I understand why people might be anxious about how to react. Here’s a quick guide, from my personal perspective, about the best way you could respond:

• If you can identify particular movements or noises as definitely tics, ignore them. This isn’t the same as ignoring the person – I always feel reassured when people acknowledge me.

• Most people with Tourettes won’t expect you to be solemn in the face of funny tics so respond naturally. This might mean smiling or laughing at a funny tic or situation.

• If you’re not sure about the movements or noises a child is making, politely ask them about it, away from other students.

• Speak directly to the child, not to anyone else who might be with them.

• Listen to the answers you’re being given and respond appropriately. This is really important. While I don’t mind being asked about my tics, I find it frustrating and upsetting when I give an explanation that’s then ignored.

• Don’t be embarrassed if you don’t know something or if you have to change your approach.

What do I do if I’m not sure whether something’s a tic, or bad behaviour?

It can be tricky to tell the difference between a tic, a compulsion, or someone being cheeky. If in doubt I’d ask the child and listen to their explanation. In my experience children don’t often say something’s a tic if it’s not. Parents and carers can be a valuable resource and are likely to have experience in this area, so discuss particular incidents with them if appropriate.

How do I balance my responsibility to other students with my responsibility to a child with Tourettes?

I strongly believe in inclusive education because all children benefit from learning in an environment that supports difference. Look for practical solutions, think creatively and don’t be afraid to change things if they’re not working. Where possible be open with your students and involve them in finding solutions.

But surely we can’t change the rules just for one child?

Making reasonable adjustments because of a protected characteristic is a responsibility under the Equality Act 2010 as well as being good practice. In my experience, while children have a keen sense of fairness they’re also quick to understand why someone might do something in a different way if this is explained clearly to them. Making adjustments isn’t giving in – it’s ensuring that education’s accessible to all.

Would they be better in a specialist setting?
While some children do benefit from the intense input available in a specialist setting, we should also be working to make sure our schools are inclusive places where difference is visible and supported. It also allows teachers to develop valuable skills, and it’s an important step towards building a more inclusive society.

Where can I go to for support?
Ask ask for support and advice. This might be from colleagues, the child’s family, other professionals such as occupational therapists or educational psychologists, or organisations like Touretteshero.

Are there more resources I can look at?
Yes! Here are a few that might be useful

Our FAQ page – Providing more information on Tourettes and on Touretteshero.
The Alchemy of Chaos – my TEDx Talk at the Royal Albert Hall – this might be a useful video to share with colleagues.
Running Away From The Circus – a video made by young creatives with Tourettes as part of the Idea Amplifier workshop we ran in 2015.
Educating the Educators – a blog post by Sophia, a young person with Tourettes, about her experiences in school.
For When Your Family Needs It – a letter to parents and carers who are struggling with their children’s tics. Share this with any families you think would benefit from it.

If you have a question that isn’t answered here please do get in touch.

As a teacher you’re brilliantly placed to support children to grow up with high expectations of themselves and the world around them. I’m sure this is extremely challenging and requires immense energy and resilience. But do remember that growing up with Tourettes can also be challenging, take immense energy and require loads of resilience. A supportive teacher who’s a strong ally makes a huge difference on the journey to adulthood, and will never be forgotten.

Thank you for all the work you do.

With much love

Touretteshero

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