Parent Carer Collective: Heather Cox

As this mum of two points out, be they typical or neurodivergent, kids will always give their parents something to worry about.

Heather Cox lives in Sydney, Australia, with her husband Alberto and their two daughters – one who is 10 and typically developing, the other who is seven and has a rare genetic condition. That condition, Sotos syndrome, causes physical overgrowth during a child’s early years of life.

Sotos can often be accompanied by autism, intellectual disability and developmental delays. And in the form of an official diagnosis, it came as a relief for Heather who, for two years, didn’t have an explanation for her daughter’s challenges.

Nowadays, Heather helps to build awareness by lending her marketing expertise to Sotos Syndrome Australasia, a not-for-profit advocating for families like her own. With both of her girls now at school, she also works full-time as a senior project manager at a creative marketing agency, and chills out in the company of friends, books (currently, Born a Crime by Trevor Noah) and podcasts.

“I’m also a big Matildas fan,” says Heather of Australia’s much-celebrated women’s football team – although netball is her own sport of choice, “which I started last year and love”.

Here, Heather shares how her life went from wildly uncertain to something that, more often than not, looks like that of any other parent.

When we are expecting a child, we usually expect to be their parent, not their ‘carer’. Do you identify as a ‘carer’?

I listened to a podcast the other day where it was mentioned that being described as a carer can feel like it takes away from our role as a parent. I understand that. I believe we are mums first – and part of raising children with disability requires us to carry out more caring duties. As parents, most of us just step up for whatever needs our kids come with!

I need to advocate for my daughter and support her in ways that typically developing kids don’t need. She is very independent, so is generally responsible for a lot of her own self-care, but there are areas of parenting that require more of me than other mums would give, such as organising therapies and having meetings with school about her individual goals.

I identified as being a parent-carer early on as my daughter was very medically challenging and I was exposed to this term. However, my caring role has changed a lot over the years – from hands-on caring and tube-feeding in the early days, to more advocating in recent years.

We enjoy more of what typical parents enjoy these days, as my daughter has become more independent, but we also make an effort to balance life and have typical experiences, not just therapies.

What were your biggest struggles in the early months and years of parenting a child with disability, and what helped you during this time?

For me, the biggest struggle early on was emotionally adjusting to having a child with a lot of question marks over their future. She wasn’t diagnosed until just before she turned two and in those early days I used to say, how can I accept when I don’t know what I am accepting? Will she walk, talk, eat independently, live long? We really didn’t know the answers.

A diagnosis meant some of those fears could be put to rest. For others, only time would tell. I learnt to remind myself that none of us know what tomorrow brings, we just have to live more in the present and enjoy what we know today.

Reading Special by Melanie Dimmitt was a game-changer for me. It was so helpful emotionally. I wrote down so many nuggets of wisdom that I refer back to during the ups and downs of parenting.

How did you start forming connections with other parents raising kids with disabilities, and what changed for you once you started forming these connections?

Connecting with other parents in Facebook groups helped so much – those people who bring you up and have a positive perspective. Some of my closest friends have kids with the same syndrome as my daughter, living halfway across the world! Plumtree and Kindred were organisations that helped me a lot. The Too Peas in a Podcast community is amazing, too.

Along with the more practical tips I got such as things to expect, therapists and specialists to see and things to do at home with our kids, after I met other parent carers, I got emotional support and understanding. Whatever I was feeling, someone else understood.

I also found people that see this disability parenting journey the same way. We are a diverse group, us mums, with lots of different paths and lots of different ways of coping and seeing things – but those who see things the same are gold to me. I hope I come to our community with empathy and support.

Nowadays, what does caring for your daughter tend to look like?

It means managing an NDIS [National Disability Insurance Scheme] plan, meetings with school about her individual plan, organising weekly therapies, taking her to some of them that don't come to her school, occasional doctor visits, and helping her squeeze her feet into her shoes!

She’s so independent these days and, honestly, a really easy child. For the most part, her life looks like any other child’s – celebrating successes, swimming and gymnastics lessons, art class, pool parties, movies, dinner out, holidays and fun outings where we can.

Can you compare your initial thoughts and feelings around parenting and caring for a child with disability to how you feel now?

It’s a roller coaster ride. People assume it must be hard parenting a child with a disability but sometimes, I feel that raising my eldest, typically-developing child is harder as she reaches a more emotional age. My youngest is very compliant and helpful and sweet – so although there are extra fears and worries and things to organise, overall I feel blessed. The fears today are much less than the fears were early on.

I don’t think raising ANY child is without worries, though. I worry about both my kids – that’s just part of being a parent. The worries may look different, but there’s always something.

What do you find most challenging about being a parent carer? And on the flipside, what brings you the most joy?

The most challenging parts now are nothing to do with my daughter’s disability, but more how society responds to it, such as where she is excluded or left out, or where we receive pity or judgement. I get upset that the world is still so ableist in many ways and systems are not set up to support children who are neurodiverse.

The joys come from seeing her do what she loves, seeing her play with her peers and when we as a family get to do things together. The same joys I get from raising my other daughter, but perhaps intensified due to the fact there have been so many question marks on what she could do early on. Seeing her treetop climb was a real highlight for me.

Humour can make tough situations and topics easier to navigate. What funny moments have you had as a parent carer?

My daughter is very honest so will occasionally come up with some very blunt things that make me laugh. We like to quote her fun expressions, like when she says, “But why not?” when we say “no” to her requests and joke around as a family.

‘Self-care’ is a bit of a dirty word in the parent-carer space, as we’re often told to do it and rarely have the opportunity. If you do manage to get an hour or so to yourself, just for you (not chores!), what do you do?

For me, self-care is just filling my cup with things I enjoy, whether that’s being with friends, playing netball, watching Netflix or having a coffee. Working is also a break from being a parent and a carer and I really enjoy my job and career. When I can, it’s going out with my husband for a nice meal or to a fancy movie theatre – but that is very rare!

Many parent carers need to step out of their careers to meet their child’s needs. How has your working life changed, if at all, since becoming a parent – and how do you feel about these changes?

The early intervention years saw a huge change! With spontaneous, unpredictable emergency hospital visits early on, a typical nine-to-five job was not possible for me. I was lucky to pick up a part-time flexible job at a friend’s company when my daughter was around 18 months, that allowed me to work the hours I could between therapies and keep my skills current.

Now my daughter is at school, I work full-time and have more of a career again. I resented having to drop my career early on, since it seemed to me that the mum, by default, takes this on. But over time I saw the perks of more time with both children in those early years and was happy that it was somewhat forced upon me. I am, however, enjoying having a full-time job again and feel blessed to be in the position to do so. I find I have a good perspective on work challenges and don’t tend to get as stressed about them as others do.

What supports have you put around yourself – or do you hope to put around yourself – so you can be your best version of yourself for the kids?

A great paediatrician and therapy team and a connection with Sotos Syndrome Australasia, so I can build a community my daughter can hopefully one day feel comfortable in. I’ve also formed a supportive group of mums of children in my daughter’s year at school, and have lovely friends I play netball with and close friends I’ve made over the years I can talk to.

I hope my daughter will be able to connect with other neurodivergent people as she grows who understand and accept her as the unique person she is.

How has your relationship with Alberto changed since you welcomed your youngest? And how do you two juggle your carer/parent roles between the kids?

It has definitely challenged us, especially during the times she was in and out of hospital. We both deal with things differently, so we’ve had to be very patient and understanding with each other. From a practical point of view, I tend to do all the NDIS management and organise the therapy and homework with my daughter at home. He does the majority of the housework, cooking the meals, preparing the kids lunches, talking out the bins and taking my daughter to therapy one day a week.

We both juggle it all as well as we can while both working full-time, but what we sacrifice is time alone together, when there is no stress and we can just enjoy ourselves, which is hard. There is no way I could work full-time if it were not for the fact he takes on so much, which I appreciate.

Is there anything you’d like to share about your daughters’ relationship with each other?

They are great together on the whole. They swim and go to playgrounds together, climb things and enjoy hanging out. It might be harder when my eldest becomes more aware of the way society can respond to those with disabilities. Right now, they are at a primary school where there is a culture of kindness towards others – and young kids tend to be less judgemental.

I’ve been told to prepare myself for high school not being quite so kind – but am taking one year at a time. It’s harder for my eldest to understand why we make a big deal of things her sister does, but we celebrate both of them.

Looking to the future, what are your hopes and dreams around how your youngest is cared for and your role in her care?

I want my daughter to be valued as the person she is – her strengths, her kindness and goodness. I hope she has a community of people she can relate to and have connections with. I hope she will have a meaningful job that she enjoys and the right supports in place. I do feel she’lll be very independent, but perhaps more vulnerable, so I hope she has people who have her back around her.

I hope to enjoy watching her achieve her dreams, alongside her sister, and that I won’t need to advocate as much as the world gets with the program. I hope the world is more open to, and less judgemental of, those who are neurodiverse or have a disability.

What do you wish other people knew about life as a parent carer?

Don’t feel sorry for us because pity doesn’t help. Instead, try empathy. The reality is there are lots of different ways to have a good life. Whether you are married, have kids or not, have a career or not, are independent or not, get divorced, or live alone. There is not one way to have a good life and be happy. It might not be the Plan A we all expected, but it can still be a great life.

My daughter is not broken or wrong, she’s neurodiverse and has a genetic syndrome, which makes some things harder and other things amazing. Just treat us as you would any other family.

What books/podcasts/TV shows/films/resources have you found relatable, inspiring and/or helpful as a parent carer?

Far from the Tree by Andrew Solomon

The Miracle of Love by Ondine Sherman

Special by Melanie Dimmitt

Too Peas in a Podcast

The ListenAble podcast

The movie, Wonder

What advice do you have for parents who are new to caring for a child with disability?

Take things one day at a time. Find joy and remember that your family life can be beautiful. It might not look like everyone else’s, but we all have things going on. Connect with others and learn from mentors in this space. Listen to those with disabilities who are adults. Have hope – as often predictions are based on children who had less support and therapy than our kids did.

Feel the feels early on. It’s okay to be upset and angry as you adjust – I still have those moments sometimes. Be kind to yourself, because this was not what you expected and that takes time to adjust to. Know that all parenting is hard – even if ours feels so much more some days. It’s often how we cope with it that makes the difference. And again, one day at a time!

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