I’ve seen a few social media posts recently from parents of children with tics who are yet to receive a diagnosis. I imagine the pandemic will have slowed this process down even further and suspect there will be families having to manage challenging new circumstances with little to no support.
Yesterday I wrote a post for children with tics who have been newly diagnosed. Today’s post is for their parents, carers and families.
I’ve written lots of posts for parents before, and you can find them here. While lots of what I write in this post will be relevant to everyone bringing up a neurodiverse child, this is primarily for parents and carers who are raising a child or young person with a sudden onset of, or increase in, tics. I’ve boiled this down into five things I want you to know now.
1) You’ve Got This – The first and most important thing I want you to know is that you will already have lots of the skills and knowledge you need to navigate this situation. Love for and knowledge of your child are immensely powerful as are understanding, empathy and openness. It’s important to focus on being their ally and advocate. Your child needs to know you are on their team. This might seem obvious, but it’s easy for children to take on adults’ worries and misinterpret them. Make space to talk about their tics and experiences, be honest about what you know and don’t know, and make opportunities to learn about tics together.
2) You are not Alone – The early days can feel quite overwhelming and lonely, so I want you to know there is a community of people ready to listen and offer support. You don’t need a diagnosis to access this and many groups on social media are secret and won’t appear in your personal profile. It can feel hard to discuss your child’s tics with friends or family members, so think about how and when you have these conversations and if there are resources that might help, for example our FAQ page or there’s my TED Talk about Tourettes. It might be useful to show them this post. If your friend or family member has sent you this post, be ready to listen, learn, empathise and support. I’m going to write a post with tips for being a good friend to someone with Tourettes soon.
3) Managing Misinformation – Lots of people, including educators and healthcare professionals, have heard of Tourettes but much of what they claim to know may be based on myths and stereotypes. It can be especially difficult to address misinformation when you’re just learning about the condition yourself. Be ready to explain how tics affect your child, you are likely to need to advocate for them at times. And it’s good for them to see you doing this because it’ll help them develop strategies of their own. Prepare for appointments or meetings by making lists of points you want to discuss, or of tics or behaviours that you’ve noticed. Think about how you might challenge others negative comments your child or their tics so you are prepared if this happens. It’s important for children to learn that adults get things wrong sometimes too and that your child knows this is not their fault.
4) Disability Isn’t a Dirty Word – I understand disability within the context of The Social Model of Disability which was developed by disabled people. When I say I’m disabled this doesn’t mean I’m ‘less able’, but it does mean that I experience disabling barriers in the world because of a failure to include a diversity of bodies and minds when we shape the world. Tourettes is the condition I have, disability is the environmental, systemic and attitudinal barriers I experience because of my tics. Sometimes people are worried about describing a child as disabled because it’s perceived as harsh, so they use different terms like ‘special’ or ‘additional needs’, but for barriers to be changed they need to be acknowledged. Disability isn’t a club where you have to hit a certain ‘severity’ to get in. Anyone who experiences barriers because of how their body and mind works can choose to identify as disabled if they want to. Scope have this guide to explaining the social model to children, make sure your child sees positive images of disabled people – these could be athletes like Tim Howard or musicians like Billie Eilish – both of whom have Tourettes.
5) Preparing For The Future – It’s natural to worry about your children and many parents are understandably focussed on the future. With Tourettes, many parents are concerned about if their child will be one of the 10% who develop Coprolalia, the technical name for swearing tics. There’s no way of predicting how tics will develop or if your child will be part of the group whose tics decrease with age. It’s important to focus on what your child requires now, on building their skills, understanding and confidence. I’ll be honest with you – your child is likely to experience barriers, and this is why your love, support and allyship are so important. Your child has rights, and learning how to assert these is an important skill you can teach them.
This post is written with huge love for your child and family. I’ve had the immense pleasure of watching many children with Tourettes grow into accomplished, creative, caring adults. You and your child are part of a vibrant, supportive community. Please get in touch at any point.