Article
Back in my own 1980’s childhood, Madonna led me to believe holidays were about good times. Forget about the bad times, she beckoned. Now that I'm grown up I feel like hot garbage every day, even though the holidays approach. I have reliable anecdotal evidence that my overwhelm will only increase once school wraps up for the year. I have two fantastic children whose needs eclipse my own. It can be really fraught, and I was lied to through song!
In my estimation, the summer holidays go for eight thousand years.
They’re financially and energetically daunting. It goes without saying that I adore my children, that raising them is a privilege impossible to quantify. There’s no but here, just an “And”. AND, it’s really tricky to navigate as a disabled parent.
I never want my kids to feel like they’re bugging me, and will generally pull an enthusiastic yes out of somewhere when asked if I want to watch them play Minecraft. Or to witness an amazing trick (jumping off the couch for the umpteenth time that hour).
But what do you do when you’re disabled and you can’t quash what your body needs, even though you love your children?
When the hellfire of the sun turns your connective tissue into little volcanoes and your general outlook is trying to remember the phrase “how put on pants?” or “oh my god the sun is rising again, I’m going to transform into a baked potato. Nooooooooooo!”
Explaining disability and spoons to my little tackers won’t make it better in the moment. When the fireball in the noon sky is killing me softly, going outside to watch the trampoline olympics or calling out types of animals for my six-year-old to be as they bounce isn’t possible. The moment I step outside, regardless of shade, hydration and gizmos to keep my body cool, the air is thick in my throat and my vision blurs. I can’t regulate my body temperature. Computer says no. My kid cries and demands in a tone similar to one you’d expect to hear in a life-threatening emergency that I come and watch. They don’t want to be alone out there. I feel the same way about the daily conundrum of how to be a loving and present parent at this time of year.
Here are some things that have been helpful for me as a partnered and disabled parent of two kids, aged 6 and 8.
Create a safe space to vent
Most school holidays I have a daily check in with a supportive crew of other parents. We’re all in the trenches, under-resourced and overwhelmed. Having a judgement free zone where we can send our thoughts into the void, Statements like “oh my GOD I bought a 500 pack of Zooper Doopers last week and they’re all GONE?!?” or “If I hear the Bluey theme song one more time I’m going to the airport and jumping on the first flight that goes somewhere without television.”
In the safe space, you can be clear about whether you want your friends to respond with suggestions (I saw them on special at the IcypoleMart online, do you want my discount code? / Have you thought of putting the tv audio through their wireless headphones?) or solidarity (Why won’t they get addicted to carrots? They’re only a few bucks for a giant bag / GREAT idea - I’ll meet you there, we can use my points to upgrade and have leg room and cravats).
Try to see it from multiple points of view
I’ve found that agreeing with my kids goes a long way. Even if their level of intensity seems out of proportion, it feels that dire to them that you’ve said no to standing in direct sunlight when it could potentially end your life. They’re recalibrating after a massive year at school or kinder or a job at the local joke factory.
The yes, and approach can shift things a smidge.
Yes, it is very disappointing that I can’t come and watch you on the trampoline during a heatwave. Will we try again after the sun goes down and take some of the Christmas lights outside with us?
Bribes
Do whatever you can to get through, man. Have a stash of special items or snacks or promises at the ready. Only use them when you’re completely fried.
Turn the lights off in the bathroom and offer them a bubble bath rave with disco lights, glow sticks and your best early 2000’s EDM playlist. You haven’t lived til you’ve seen your kids go off to Faithless and Kosheen with bubble beards.
Have some toolkits at the ready
Colouring in books, ear plugs, vouchers to buy a movie online, a jar of activities written on pieces of paper you brainstorm as a family. Laminated collages of all the snacks they like stuck to the fridge so they can look at the picture before the dreaded “I’m hungryyyyyyy” makes your toes curl. If you plan main meals together, and snack times, everything else seems to fall into place a bit more easily.
You’re looking at smaller blocks of time rather than a long endless stretch of insurmountable emptiness.
If you’re resourced to send your kids to school holiday activities, it can be brilliant for everyone. In Djaara Country Castlemaine, there’s a three day mountain biking course that’s been a game changer for my kids - they love riding their bikes most days and can do so independently in our front yard. The local after school care place has a brilliant holiday program too, and both kids have enthusiastically selected a couple of days where specific activities are happening. It’s fun for everyone to have adventures and share them over dinner.
There are often free activities at your local library, or the council may have free or low cost options for fun things too.
Know your base needs and stick to them
If I don’t get 90 minutes in a quiet, dark room in the middle of the day, there’s no way any of us are making it to bedtime without a meltdown. These base needs are non-negotiable and ensure everyone’s wellbeing is catered for. Literally write them down - externalise them from the mystical mind cave that will bend under pressure and think “I’ll be ok, just this once.” You will not!
Don’t forget to eat, bathe, hydrate and sleep as much as you can. This is your armour and your scaffolding.
As an autistic person, my routines are everything. I look forward to smug pudding (greek yogurt, nuts, dark chocolate and berries) at the end of the day just as much as the quiet that signifies it’s time to smug it up. Feed your senses and give yourself big pats on the back for getting through each day. You’re making magical memories and even though your kids are probably complaining 80% of the time, if you ask them later they’ll talk about all the good stuff.
Identify your strengths and celebrate them
When I’m exhausted and overwhelmed it can be easy to focus on what I can’t do, and how I’m perceiving my failures. What my kids see is someone really great at hugs, craft sessions and a person who will hyperfocus on their comic book idea or lining up things in their bedrooms in a particular order. A trip to the air conditioned library, where the culture is one of being softly spoken? Oh yeah, that’s the business.
Team up
Check in with other families. Is it easier to have a whole bunch of kids together while you fire up the kettle and catch up with the other parent? Can they take all the kids to the park while you host a movie afternoon another time?
Keeping score doesn’t work when it comes to energetic capacity, we all bring what we can to the table and you don’t necessarily need to match the other family’s activity level.
While I can’t go to the skate park and sit there for hours on a hot day, I can curate an experience for all the kids together that largely revolves around amazing snack platters, special smoothies with fancy straws and working together with the kids to crafternoon some non-transferrable tickets in the lead up.
It gets easier each year. The summer holidays are when I notice how much they’ve grown, most of all. It’s all that uninterrupted time to spend together and notice their growing independence and negotiation skills.
I’m thinking of you all, fellow disabled parents. May the odds be ever in your favour.