How being disabled prepared Lefa for parenting in lockdown – Ausnew Home Care

How being disabled prepared Lefa for parenting in lockdown

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Surveying our lounge room, my partner and I take a large breath in as we stand over the detritus of a rainy morning with an over exuberant three-year-old and a cranky 10-year-old.

Blocks litter the floor, half-eaten pieces of toast and fruit are assembled like a Picasso painting on the grubby table, crumbs have taken over every surface, picture books are tucked in the back of the couches, and Lego is strewn over the top of it all like confetti.

We give each other a wry grin and as my partner starts picking up the mess I ask, "How's the serenity?" We laugh.

This is the start of our precious 24-hour break in the week. The one day/night that our village (my parents) steps in and takes our kids so we can work and hopefully rest uninterrupted.

Our instinct to find connection and humour together in this moment is one that has been crucial to our family surviving what is now over 26 consecutive weeks without childcare or school, locked down in our home.

My health conditions mean we have been conservative since way back in March when coronavirus started its slow then accelerated spread through Victoria.

All of our lives have been transformed by the pandemic, no matter what our circumstances. Adding a disability into the mix of working from home and homeschooling may seem like an added burden, but I've come to realise that being a disabled parent has given me the skills and fortitude to face this crisis.

I have been living with ME/CFS for many years — since before the birth of my first child.

Acquiring a disability put me through a long process of reassessing my life. I have come to accept that while I may have less energy to expend daily than the average person, what energy I do have should be used only on what matters most.

I have calibrated the spheres of my life — family, health, work, friends — finding the balance that works for me.

I have refocused my priorities and appreciate the abundance of positive things in my life despite the limitations I now live with.

'Non-disabled people have much to learn from us'

From the earliest days with my eldest child, my partner and I focused on ensuring that if I was taken unexpectedly ill, he would be able to step up and do anything I could do for our child.

We stocked the freezer with breastmilk, he took equal night-waking duties and learned the intricacies of our baby's daily routine.

My fear of my own limitations gave us the advantage of an equitable division of the labour of those early days, something we are grateful for and have continued to apply as our children have grown.

Critically, my disability and our team approach towards managing it as an inevitable aspect of our lives means my partner and I found it easy to have frank conversations about how we would adjust our working lives and parent from home during the pandemic.

We've been here before, balancing the needs of our children with the limitations of my health and the demands of our careers. We know how to focus on the obstacles without blame.

There are many hard days during this pandemic. Days when working from home while attempting homeschooling feels like an absurd farce. Where both parents are juggling urgent work tasks, and our children are struggling to cope with their new reality.

I am well-schooled in how to let go of what I want to achieve in a given day, to accept the limitations — be they my own body or external factors — and instead refocus on what is needed. What absolutely must happen, and what I can let go of.

Perhaps the most important tool in my arsenal, a skill hard-won through the experience of being a disabled parent, is resilience. I don't have the illusion that life runs a predictable, steady course.

I am acutely aware you cannot take your health for granted, nor rely on things remaining as they have in the past.

I have learned to adapt to what each day brings, to focus on what is possible with the resources you have on hand.

I'm not the only disabled person who's noticed it either.

"Non-disabled people have much to learn from us, and the skills we have at dealing with hard times," People with Disability Australia media and communications director El Gibbs says.

"Disabled people are adaptable, problem-solvers and generous with their knowledge."

El believes disability sets us up to accept drastic changes in life.

"I have experienced sudden, catastrophic changes in my body and life more than once, so I do know that these are not only survivable, but that I can deal with them, even with a little grace," she adds.

How our support networks have made a difference

The last few months, I have watched other parents struggle with the pressure to get it all right; provide a full day of engaging, educational schoolwork for children while achieving pre-pandemic levels of output at work.

I've never felt the expectation some mothers do to achieve perfection in parenting, or to think that accepting help is failure.

My disability means that I am acutely aware of my vulnerabilities. I am prepared to ask for and accept help that benefits my health or the lives of my children.

Both sets of grandparents are a part of the wonderful safety net of support that keeps me healthy enough to juggle part-time work, parenting, managing my health and even sometimes studying.

Without it, my life would be much smaller, my energy swallowed up quickly by the demands of children and home life.

Yes, the pandemic has also exacerbated aspects of my health conditions. The sensory overload of two children stuck at home 24/7 is inescapable and exhausting, and the extra load of homeschooling adds more pressure to our days.

But overall, the supports I and my family have built into our lives to support my disability have proven to be some of the most useful factors in finding our way through these challenging times.

My disability has made me resilient. It has taught me to be flexible, ready to adapt and refocus on any given day depending on what life throws at us.

I know that even on the worst day it's the little things that will get you through. These skills happen to be exactly what is needed during our current circumstances.


Source: ABC

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