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For Carers of a Loved One On the Spectrum: Self Care Starts With You

January 26, 2024

Who were we before we were carers for our autistic children, and who have we become after? How do we want to be, and what have we given up and gained on the deep path of raising them?

For Carers of a Loved One On the Spectrum: Self Care Starts With You

I would not change my kids. I love and adore them for who they are. I appreciate who I have become, since they have come into my life. Yet the society that surrounds us, is often wilfully ignorant of our strengths, challenges, and accommodation needs. This is what impacts me the most, but I cannot change all that, so I need to adjust how I care for me. The whole of me. Because when I’m good, chances are, they’re even better.

Autistic people and their carers are applauded when we conform to the attitudes and behaviours of the neurotypical world. Still these spoken and unspoken adjustments are not gifted back to us, and it costs us.

It costs us to love these kids with an intensity that knows and celebrates who they are, but others do not seek to know them. For we are the teachers and custodians of their life skills, development, identity, and self-esteem. We not only support them to grow into their best selves, but we also must be the constant translator between them and many others. This is a big and constant job.

The result is that people with autism and their carers experience greater levels of poor mental and physical health, which caters to a greater challenge, disadvantage, and isolation. The road of constantly being ‘the other,’ impedes us mentally, emotionally, physically, spiritually, financially, and socially. In sum, being the outsider adds more distress to our minds, bodies, hearts and souls.

This can leave us on islands with no guide or support, and often only ourselves to keep us going. So how much time and energy is left for us? For our holistic wellbeing? How do we build in self care? For me, being an autistic parent of 2 autistic kids, I didn’t do this much in the past.

Yet as the kids are now eight and 10, I have slowly begun to take back more time for me. I’ve needed to nourish myself holistically, so I have joy and energy left to nourish the whole of who they are.

I am a trained nurse, naturopath, intuitive guide, and EFT practitioner. So holistic self-care has been a lifelong passion, and I have been called to live the principles that I have learned.

As we have happily embraced our neurodiversity, I have felt more like a mindful mystic misfit. In a good way! But being different, I have had to spend time identifying and honouring my and our family’s unique dreams, values, and choices. The guidelines of self-care for other families didn’t seem to fit us.

Having four neurodiverse people in our house, means adaptive acceptance is a daily practice. Hubby is tribe too, and he’s still learning how to navigate this identity. Each day we’re creating our own individual and family preferences, expectations, and supports. Sometimes, our unique sensory systems all have different needs, and I love that we aim to attend to these with acceptance and kindness.

Before this gentler time, my life had gotten so out of balance that my depression, anxiety, and weight issues were getting on top of me. I had given up all my previous self-care practices and had put the kids and family first. I no longer felt valuable, soulfully beautiful or even in control. I was yelling, spending, and eating far too much. I had to make changes. So I used my autistic focus and passion, to devote myself to creating my own path of holistic self-care and wellbeing; to being happily me, regardless of what the family or world dished out.

Having worked in community health and now embracing neurodiversity, I realized that holistic well-being was different for every family, so I designed a process that supported any person to be well so they could celebrate their distinctive and valuable mind, heart, soul, and body.

So how do these 4 steps work beyond a picture?

1. Learn to Be Calm.

Learn to calm the noise of your busy mind, heart, and life. Explore the tools of mindfulness, heart expansion mediation, and the tapping of Emotional Freedom Therapy, (EFT). They all offer reliable and simple reprieve from stress and chaos. They focus on self-kindness, for wellbeing requires a loving, inner voice.

Ask yourself, “What do I know about me now?”

Quiet self and ask: where am I and where do I want to be? What needs attention? Is it my mind, heart, body or soul? Or all of them?

2. Dare to Be Courageous.

Once you know where you want to be, risk looking at what is and face where you are and where you want to be. Does the gap feel achievable, and do I value myself enough, to gift me the time and energy to realise this? Do I know, value, and use my innate strengths?

Reflect on how you really feel

Gently lean into your feelings, and ask, “Is what I have or what I want true to me? Is this for another or me?” If you feel aligned to a make a shift, set one goal for yourself.

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3. Be Confident for You.

Now you know your gaol, it’s time to back yourself. You’ve sought to realize your worth, value, and strengths. Now commit to get on with it. Research what you need to know and do, then advise and negotiate with the people you need support or changes from. Plan, act, and assess; then plan, act, and assess.

Nourish your whole being

With a shaky voice or knees, give yourself fully to the practices and actions needed to look after the whole of you. Know that when you are nourished and strong, you will attend to your family with greater energy, compassion, and conviction. You will know that your happiness is an energy that can inspire, soothe, and nourish your whole tribe.

4. Be the Creator of Your Own Life.

Once your insights and actions have started, you may feel that you are on the right path, but know there is no actual destination. You will have outcomes that nourish you and feel great, because they bring joy and freedom in the present moment. By not needing to arrive, the present moment becomes the focus and place of power and contentment. Here your soul can arise, and you may seek deeper spiritual experiences for your self and life.

Simply be you

When life is flowing in a path that supports you, now there’s time to work out who you are outside of being a carer, partner, worker, or doer. In between the actions, the restful and still moments offer connection with your innate value, wisdom and power. Being free to be you!

It’s known that quality sleep, food, movement, connection, meditation, fun, and rest is good for us. But how do we incorporate all of these, in the order and way that suits our life today? By being you. By seeing and celebrating you and your life as it is today; you can slowly build in more self care aspects of calm, courage, confidence, and creation. This path starts with committing to get to know, trust, value, and simply be you.

Most joyfully, I have taught my kids these calming, refection, and action tools. It is such a delight to see their surprise and competence when their troubles fade, and they quickly forget what the issue was, and move onto play or sleep. One of the greatest pleasures of my own holistic self-care, is teaching my kids theirs.

At times, I do worry their future heath, wealth, relationships, and happiness. Yet with these skills, I know they are learning sustainable lifelong tools to build resilience, regulation, and autonomy. This makes me so very happy. I am much more at ease, knowing that my beautiful kids will grow up feeling more empowered, and able to soothe and regulate the uncomfortable feelings that will surely come.

So in some moments I do take refuge in the fridge, shop, or couch, but I do it knowing what my next self care choice could be. I know that I have done so much, and I am capable and enough. I am now all I need, and each daily practice and choice reinforces this. I can now joyfully be me, be here and be free.

This article was featured in Issue 99 – Navigating Relationships With Autism

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