Raising neuro–divergent children

BY CATHY SPOONER

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 unknown. 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 the 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 envisioned 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, as 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 envisioned 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. Supporting my 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’ve 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.

Cathy Spooner is a Motherhood and Self–Embodiment Coach and Author who lives on the Central Coast with her three children. She offers 1:1 support, group coaching, online courses and her new book Conscious Motherhood is available online. www.cathyspooner.com.au

ON THE CENTRAL COAST Helping sick kids

Opening its doors in 2013, The Ronald McDonald Family Room at Gosford Hospital has welcomed over 56,000 people in need of a break. Providing families, a welcoming and safe place to grab a snack, enjoy a cup of coffee, wash and dry personal items, shower and spend valued time with family members.

A refuge for families with sick or injured children within the Children’s Ward, Maternity Ward and Neonatal Intensive Care Unit, The Ronald McDonald Family Room relies on the generosity of the local community for support and the dedication of Volunteers.

Volunteers are the welcoming face of the Ronald McDonald Family Room, Gosford. Whether it’s making a cuppa, lending an ear, or making sure the Family Room is a clean, comfortable and welcoming space – none of this is possible without the assistance of Volunteers.

With life returning to normal after the uncertainty of the past few years, The Ronald McDonald Family Room Gosford, is currently recruiting Volunteers to be able to return to pre Covid operating hours.

Little Amber was born prematurely at Westmead Children’s Hospital with Hip Dysplasia and a Congenital Heart Abnormality and was staying at Gosford Hospital. As new parents, James and Tiffany of Kincumber, loved visiting the Family Room and were so grateful for the beautiful Volunteers that made their stay that little bit easier. The Volunteers are “Second to none with great energy!” James and Tiffany said.

Volunteering is a great way to meet new friends, learn new skills or simply give back to your local community. Volunteer, Sharyn, has been a part of Gosford Family Room since 2013. Sharyn’s favourite part of the role is welcoming back return visitors to the room and being remembered by them even if it was a long time in between.

If you are interested in becoming a Volunteer at the Ronald McDonald Family Room at Gosford Hospital or are interested in hosting a fundraising event on their behalf, please send an email through to gosinfo.nnsw@rmhc.org.au

To get find out more or get involved visit www.rmhcnnsw.org.au

Fundraiser Fun Day 3-6pm Saturday June 18

26 Central Coast Highway West Gosford grsl.com.au

All funds raised will support sick kids and their families at the Ronald McDonald Family Room in Gosford Hospital. Ronald McDonald and The Fun Engine 3pm

Free face painting & jumping castle!

$15k Fundraiser Raffle! Online and Inhouse 5pm