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Parents of kids with disabilities: the hidden mental load, expectations and self-care

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Parents of kids with disabilities: the hidden mental load, expectations and self-care


You might have heard of the phrase ‘carrying the mental load’. It’s all the thinking, planning, organising, shuffling and list-making going on in your head to manage life. Parents juggle a lot and everyone’s mental load is different, but have you ever stopped to wonder what it’s like for parents who have a child (or children) with a disability?

Source Kids featured an insightful blog about this very topic, talking about the hidden workload and mental load and explaining that sometimes others just aren’t aware of what goes on behind closed doors.

The mental load can include household, caring and work responsibilities; personal relationships; financial obligations; life administration and everything else in between. But for these parents there’s also a range of other things to keep track of like monitoring medication and making sure there’s enough supplies, copious amounts of medical paperwork, researching their child’s condition and the endless hours sitting in waiting rooms or at hospital.

Leigh* is a mum living on the Sunshine Coast with her husband and 2 daughters. She says when it comes to carrying the mental load, she feels like her mind is always running with little to no down-time.

“Being a parent to a typical child and a severely disabled child means I’m constantly juggling to try to make sure everybody’s needs are being met, as my children’s needs are polar opposites. I always carry a notepad so I can keep a jobs list of things that need doing, organise what needs purchasing and reminders of what I want to achieve in that day (for example make appointments, order supplies, collect medications etc).”

Leigh says parents definitely put too much pressure on themselves to try to conquer everything in a day, when in reality it just isn’t always possible.

“I have shifted my parenting expectations and allow myself to accept that sometimes ‘enough done in a day’ was my best,” she explains.

When it comes to sharing the mental load, she has a whiteboard organiser on the fridge with a column for each family member to review what jobs they need to do and space where they can also write down grocery items.

So, how else can other parents or non-parents (family, friends or neighbours) help out and show their support?

Source Kids lists 8 practical ways to help parents who have a child with a disability:

  • Reach out (simple gestures like a call, text or email can mean a lot)
  • Visit them (check in advance when is a good time)
  • Be open to learning (ask questions to learn how you can support them)
  • Offer to watch their other children
  • Help with housework and errands
  • Help them celebrate (acknowledge the successes and milestones of their kids)
  • Bring food
  • Just listen (let them know they’re not alone)

From Leigh’s perspective, she says there’s different things that she finds most helpful.

“When you have a severely disabled peg-fed child, babysitting isn’t something people can really offer but I find friends checking in on me and just talking and having adult communication and engagement is so necessary for my mental health.

“It’s so hard when your child has been sick, you’ve been house-bound and feel so disconnected from the world, but it’s amazing how uplifting a phone call or even a simple text can make you feel remembered and thought of. I think we all need to feel valued by our friends and, depending on the type of person you are too, what you need from others. For me, I need to not feel forgotten to the world.”

Lauren, a mother of 2 boys on the South Burnett, says she found a variety of things helpful while raising kids and juggling life.

“When my son was a toddler, the biggest help was probably if my mum babysat him while I went grocery shopping. He has Asperger’s and was a runner – so this meant I wouldn’t have to worry about him getting away from me while I was downtown at the shops.

“Other helpful things were hanging out or bringing in washing, or peeling veges for dinner. Even though they seemed like small things, they were actually greatly appreciated and felt much bigger to me.”

For parents who’re struggling to juggle everything on their plate and who might be going through a tough time, self-care is often talked about as an important strategy – although feelings of guilt can often get in the way.

Recently Leigh has been trying to make more of a conscious effort when it comes to self-care. She says she’d forgotten what she liked to do when she had free time, but now she’s begun trying a few craft courses, as it teaches her new skills and encourages her to socialise out in her local community.

“It’s a great way to fill up your bucket and feel connected to the outside world,” she explains. “Self-care should be a priority because you cannot continue to give from an empty bucket.”

Lauren agrees that self-care is an absolute MUST.

“When my youngest son was old enough that he didn’t have to go everywhere with me, a few times someone would stay home with the boys while I went to a café and had a coffee and flicked through a magazine. Even a short time away was good just to try to reset. Going for a massage every now and then was helpful too.

“Even if you don’t like asking for help, you need to do it – otherwise you’ll wear yourself out both mentally and physically – and then you won’t be able to look after anyone!” she says.

If you’re a parent who’s feeling the pressure to juggle it all, or if you know a parent who might be going through a tough time, check out our conversation starters on asking for help and offering help.


*Names changed for privacy