Our story being a Neuro-Divergent family

I remember the day I sat in that cold Psychologist office on a rainy day. Her smile and sunny demeanour didn’t change the rain outside and the heaviness on my heart. She gave us a thick wad of a report with our son’s name across the front and told us that he had Autism Spectrum Disorder.

Silence, nodding, heart beating.

She went on to draw colour coded pie charts of different aspects of life and where Harry sat amongst it all. She told us his strengths and all the things he might never be able to do like understand emotions, make friends, talk properly or be comfortable in the world surrounding him. She gave us so much information yet still, in that moment we have never felt so lost.

As a family we had seen the differences in our son for a while. His speech was mostly incoherent with a low vocabulary, so much so we learned sign language to help him communicate. He seemed to have these intense meltdowns over things we could not even distinguish at times. He cried a lot, was always bumping into things and just seemed unhappy in the world. His diagnosis wasn’t a shock, in many ways it felt like a relief. Finally there was an answer that gave us a pathway to understanding our little boy more deeply and to help him be his best.

Looking back to those early days there was fear that stemmed from the uknown. From wanting and imagining one kind of life for our child but now wondering if that could ever be possible. For parents of neuro-divergent kids it’s a familiar but heavy weight on our hearts, but we all hold that the best we can. We support them, we love them, we go to therapy, we read all the books, we learn so much about them and it completely changes our perspective on the world. We do all of this with that hope that their lives will be easier, happier and fulfilled.

Sometimes that version of life will look different to what we had imagined it to be for them and for us. I’ve waded through the guilt of missing what we visioned life to be like and let it go a thousand times over. I’m not a bad mother for dreaming of one thing, then being gifted a completely different experience. Because being a parent of a neuro-divergent child invites us to experience everything differently and shows us the broadest spectrum of emotions for us parents.

We cycle through waves of shock and grief alongside pure dedication and admiration for our children. And over time I’ve come to realise all of these experiences are okay. I am allowed to grieve the life I visioned for my children and in the next breath not want to change a single thing about them.

Many years after that rainy day in a clinic, our eldest son was also diagnosed with Autism and ADHD and although I felt somewhat confident in navigating this, I still had a moment of bewilderment - for him and for us. Because as much as my heart aches for the challenges he will face in his life, my heart aches for us as a family and how we navigate this.

How do we all cope?

How will we support the boys and us?

How will I cope emotionally through this next stage?

Sometimes I feel like we don’t talk enough about the emotional toll on a family as a whole that are navigating neuro-diversity. It’s almost taboo to say anything negative, or do anything that isn’t being a pillar of strength for your family unit. That mum guilt weighs even heavier on us at times.

The reality of raising neuro-divergent children is much more complex. We feel overwhelmed with all the moving parts we have to watch and monitor to ensure everyone is happy and regulated. We have moments when we wish for things to be easier then in the next breath marvel at how beautiful and unique their minds are. I’ve had conversations with  mums who are exhausted from always being on, endlessly jumping from one need to the next, constantly worrying and being in a state of anticipation for the next trigger that could upset one of the kids.  

It can feel like no one really understands what this journey is like, how much this calls on everything we have and then some more. Supporting our children on this journey is the hardest thing I have ever done… yet by far the most rewarding.

Over time I’ve learned a lot about my children … and myself. They opened my eyes in the most profound way.

We have carved out life in way that may not be the norm.

We have had to stop caring what anyone else thinks and just do us.

I’ll never judge another person by what I see on the outside, or another mama who has a screaming and resistant child.

I’ll also never pity parents of neuro-divergent kids, we don’t need pity, we need understanding and support. We need invites to parties, a reassuring smile and honest questions so this world is more welcoming of neuro-diversity and the incredible humans that make it that way.