Photo: Inez
Photo: Inez

SocietyDecember 8, 2020

How do you save a child from falling off the edge of the world?

Photo: Inez
Photo: Inez

The final in this season of Frame documentaries introduces 11-year-old Inez. Her story is one that will resonate with a lot of families, writes mum Sonia Gray.

Inez is part of Frame, a series of short documentaries produced by Wrestler for The Spinoff.

This film is about my daughter Inez. She’s 11 years old and is a funny, kind, smart, quirky kid. But life for her has been very difficult, in a way that will resonate with many.

As a baby, at least compared to her twin sister Thandie, Nezzie cried – a lot. She was a loud and demanding toddler, but not in a way that suggested anything was wrong. Then when she was six, everything changed. Nezzie’s world started closing in and she stopped doing the things other kids did. She’d always had a love affair with books – she read more between the ages of five and six than I’ve read in my entire life – but her reading became obsessive. She stopped playing with other kids at school break times. “I don’t need friends, mummy, my books are my friends,” she told me, but I knew she desperately wanted to fit in. She stopped eating anything but three or four foods, and her wardrobe pared down to three dresses, then two dresses, then one. She wore that summer dress every single day, and we washed it every single night. For a whole year.

Nezzie couldn’t bear to have her hair washed or even brushed, so it slowly began to develop into one big dreadlock. It was almost impossible to get her outside, and then she couldn’t bear the touch or sound of water. She became angry and violent at home, and then later at school as well. She was plummeting in a way that made me feel like if we didn’t catch her, she might just fall off the edge of the world. It was terrifying.

And so began the fight to save my child, which involved navigating a system with absolutely no road map. I worked my way from the GP – “I think you just have a hungry kid” – to a variety of different paediatricians, OTs, psychologists and a few snake oil salesmen too. Along the way Nezzie was given multiple diagnoses: ADHD, ASD, ODD (oppositional defiant disorder), sensory processing disorder, dyspraxia, dysgraphia, dyslexia, dyscalculia and giftedness. I think there is validity in all of these, but a diagnosis doesn’t mean anything if, at the end of it, you’re still a family living in crisis. Which we were, for five years.

What I’ve learnt about giftedness, in particular, is that it extends beyond learning. All that information coming in is an assault on the senses. The world for Nezzie, particularly when she’s anxious, is Too Loud, Too Tight, Too Bright, Too Unpredictable. And when it becomes overwhelming, the response is fight or flight. In Nezzie’s case, it was usually both.

Our worst day came when Nez was eight years old and ran away from school. She was missing. The police helicopter went up and waterway searches began and I remember thinking “if we find her, at least we’ll get help now, at least they’ll believe me”. Eventually she was found, but the most I was offered was a suggestion from the police officer that I have a chip implanted in her arm so it would be easier to find her next time it happened. “This sort of thing happens all the time,” he said.

You may be reading this and thinking, “I wonder if she tried omega-3s”. (For the record: I did, but this is an infinitely bigger problem than any omega-3 can fix.) Or maybe you’re thinking about “setting boundaries” or “time-out” or “schedules”. I understand that unless you’re living it, something like this is so hard to comprehend. But we need to at least try to understand and find empathy, because eventually all of us are affected – the ripples spread wide and they’ll find you too. Kids like mine, who present as “bad kids”, are often left unsupported and untreated. They end up pulling a middle finger to the world. And they become the ones who end up filling our prisons, our hospitals and our suicide statistics.

There are many capable, beautiful, committed professionals out there who are making a difference, but it took us a long, long time to find them. People who will listen and believe you and don’t resort to “what’s happening at home?” when their strategies fail to work. People who really wanted to understand Nezzie, and could see her behaviour as a symptom rather than a punishable offence. That’s what has made the difference.

Thankfully, this year things have shifted remarkably and in a very positive way. Nezzie has friends, really good friends who she loves and who love her back. She loves school and loves her teacher. She’s laughing again, and as a mother I feel like I can breathe again. But to get to this point it’s taken not just a handful of people, not even a team, it’s taken a squad. From school staff to the specialists to family, friends and colleagues, it’s taken lots of people working really hard in different ways to bring Nezzie back to that fork in the road. And then to hold her hand as she learns how to walk the other path – the one most of us take for granted.

I’ve met many families who are in crisis like we were, and the more I meet, the more I’m driven by this whakaaro: what can we do to lift the veil, to blow away the cobwebs? How can we help parents come out of the closet and get the help they need for their child? How can I be as honest as possible without compromising my own kid, and make the road easier for all those riding with me and those who’ll come after? I guess it starts here.

Most kids like Nezzie suffer in silence, and that creates problems further down the track. Many of them have been excluded from school, and they don’t get invited on playdates or to birthday parties because it always seems to end badly. Even just going to the mall or to the park can turn into a nightmare. Their parents have lost the energy to keep fighting. They’re tired of having their crisis situation flattened and oversimplified and chucked in the too-hard basket. And you don’t see them because families like these slowly shrink their lives down to fit the shitty new reality they’ve been dropped into.

So my plea to you is this: accept that you might not understand, but open your heart anyway. Make it elastic enough to fit those children who can’t play by our society’s rules. And then get to know them and their families and encourage your kids to do the same. We’ve thrown thousands of dollars at trying to find help, but the biggest gains have come when people reach out to Nezzie, especially other kids – when she feels connected, part of the tribe. That often means crossing over to her side of the bridge, but it’s pretty damn cool over there, I promise you.

Frame is a series of short, standalone documentaries produced by Wrestler for The Spinoff. Watch more here.

Made with support from NZ On Air.

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