Opinion: Finding our way

By Emily Conway, National Caregiver Recruitment Coordinator, CCS Disability Action.

Being the mum of a neurotypical child and also a neurodivergent child, I often reflect on the concept of Mātauranga (Knowledge). I recognise that I am both a teacher and a learner as I navigate parenting my children.

When I became a parent, I hoped that my children could be anything, do anything and achieve anything. I may have even secretly hoped for more – an exceptional child.

Like most parents, I want my children to have a smooth journey into adulthood.  I experienced an overwhelming sense of grief as I came to terms with the loss of the child I dreamed I would have. It’s important for you to understand that I hold this feeling alongside a deep love and appreciation of her – the two are not mutually exclusive.

As I adjusted to a place of acceptance, the battles began to ensure my child is included and their rights – which, don’t forget, are the same as my non-disabled child – are upheld. 

I educated myself in advocacy and became an expert in the field of her diagnoses. I learnt about legislation, policy, and procedure that I drew on to ensure she has access to everything she needs for equity, participation, and inclusivity. If that sounds exhausting, it is. But we all want our children to experience Hauora (Wellbeing), and most of us will do everything we can to achieve that.

And what about when we have a child that is diagnosed with a hidden impairment, who doesn’t fit the mould of what society expects? Being judged for your parenting when your child is not behaving in a socially acceptable way is hard.

Do you know what’s worse? When people judge your child.

The stares – it hurts.
The exclusion – it hurts.
The isolation – it hurts.

My heart breaks for my neurodivergent child, who just wants friends who accept her. 

I hope for legislation, policy, and procedure to serve all disabled kids and children like my daughter. But for right now, I would love to see people's attitudes change. I find that’s the biggest barrier to authentic participation, acceptance, and inclusion.

Through work and through my daughter, I am lucky enough to get to know many awesome neurodivergent children. Like neurotypical kids, they have different strengths, personalities, interests, and passions. CCS Disability Action’s foundation statement captures this well: Te Hunga Hauā Mauri Mō Ngā Tāngata Katoa. It recognises that all people have a unique lifeforce and value. How would life look for our kids if everyone believed this in its truest sense?

My daughter is smart, funny, curious, and kind. She is loving, generous and has an incredible appreciation of the environment, animals, insects and younger children. She is strong, sporty, and silly. She is creative, beautiful, and cuddly. She is the most determined person I know. And there are no words to capture how much I love her.

When she ‘over talks’ (which is often), it’s because her brain is working so fast to try to understand the world. She struggles to be patient and wait her turn for things. She likes to be in control to help her manage her anxiety. Her worries are multiple. And for these things, I love her too.

She finds the world so confusing and shows up and faces up to it every day anyway. For that, I think she’s incredibly courageous.

Why am I telling you all this? I definitely do not want your pity. Our challenges are part of an awesome life. I do not want your advice. If I do, I’ll ask you (and I’ve received plenty of fantastic and unwanted advice over the years). But I do want you to know that my child has feelings and wants to be included and accepted. I also want you to know that my child is worth getting to know.

Parents and caregivers play such an important role in creating and fostering connections and friendships. So, next time you see someone struggling with their child, consider offering some emotional support or encouragement. Even just a friendly wave or smile means a lot. If you’re feeling unsure how we might fit into your life – ask questions. If your child has a disabled child or neurodiverse child in their class – consider talking to them or asking their parents what their child is interested in. You might find they have shared passions that could lead to a friendship.

We all want to set our children up for success, and for them to experience true Whanaungatanga (Connectedness). Will you help them find their place in the world alongside us?

Note: image is a stock photo and does not depict Emily’s child.