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Some books begin with an idea, mine began with a little boy
Posted 10hrs ago
by Isabelle Costanza
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By Isabelle Costanza
There are moments in motherhood that change you forever. Not the obvious ones, like watching your child take their first steps or hearing them say "Mummy" for the first time. The moments that change you are often quieter. They arrive without warning and settle somewhere deep inside you. For me, it was the day my son started noticing his Tourette's.
When he was first diagnosed, his tics simply existed. They were part of him, and he carried on without much thought. But as he started school, something changed. He began asking if people were looking at him. He worried that other children would notice his tics. He told me he was scared of getting into trouble at school because his tics made noises during lessons.
It broke me.
As parents, we're wired to fix things. We kiss grazed knees. We chase away monsters under the bed. We reassure them that everything will be okay. But what do you do when the thing hurting your child can't be kissed better? I couldn't stop his tics. I couldn't promise people would always understand. I couldn't guarantee that no one would stare, make comments, or mistake something completely involuntary for bad behaviour. For the first time in his life, I felt completely powerless. There's a particular kind of heartbreak that comes from watching your child lose confidence in something they never chose.
People often see Tourette syndrome as the tics. The movements. The sounds. But they don't always see what comes with them. The constant awareness. The anxiety of being noticed. The fear of being misunderstood. The effort it takes to exist in a world that expects your body to behave in a way yours simply can't. As his mum, I carried those worries too.
I found myself explaining Tourette's over and over again. To teachers. To other parents. To strangers who stared a little too long. Every conversation mattered because every conversation had the potential to make the world a little kinder for my son. But it never felt like enough.
Writing has always been where I put the feelings I don't know what else to do with. So I started writing. I wrote because I needed somewhere to put the helplessness. I wrote because I wanted people to understand what life looks like from this side of the diagnosis—not just for the child living with Tourette's, but for the parent whose heart breaks every time they see their child trying to make themselves smaller.
Somewhere along the way, those poems became a book. What began as a way of surviving became a way of speaking. If even one parent reads it and feels less alone, then it has done its job. If one teacher better understands the child making noises in their classroom... If one person chooses compassion instead of judgement... If one child with Tourette's realises they don't have to apologise for existing...Then every difficult word was worth writing.
I can't take my son's Tourette's away. If I could, I probably would.
But I can help tell his story, and the stories of so many families like ours, with honesty, vulnerability and hope. Sometimes, when you can't change your child's world, the best thing you can do is try to change the world around them.
As I wrote, I realised these poems weren't just for me anymore. They were for every parent who has ever felt helpless. For every child who has wondered why they can't just fit in. For every family trying to navigate a world that doesn't always understand.
Those words became a collection of poems called "Normal" Was Never the Point.
The collection is an honest reflection of motherhood, neurodiversity, grief, resilience, and unconditional love. It isn't just about Tourette syndrome; it's about learning that the goal was never to be normal. The goal has always been to be understood, accepted, and loved exactly as you are.
To continue supporting the community that inspired this book, 25% of all royalties from the book will be donated to Tourettes Action, helping the charity continue its vital work supporting people living with Tourette syndrome and their families.
"Normal" Was Never the Point was released on 1st August and is available on Amazon. My hope is that it helps parents feel seen, encourages greater understanding of Tourette syndrome, and reminds every child who feels different that they were never meant to fit into someone else's idea of "normal" in the first place.
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