Doing our best and hardest work in lockdown

April 9, 2020

Angela Cuming

It has been nearly seven years since Angela Cuming, mother of three including four-year-old autistic twin boys, has had a good night’s sleep. One day she’ll get around to washing the mystery basket in the corner of her laundry, meanwhile she shares her COVID-19 Lockdown.

9 April 2020 – IT’S NOW DAY 175 billion of lockdown and there are currently only two certainties in life: that there is no greater pain in the world than treading on a piece of Lego at 2am and that there is no greater measure of patience than that possessed by a parent or carer of autistic children during this lockdown.

Parenting autistic children can be challenging at the best of times, but we are now doing some of our best – and hardest work – with this rahui.

I am now home all day, every day, with non-verbal autistic identical twin boys, Tommy and Henry, who are usually at kindergarten four days a week. So now there’s no kindy, no regular speech and language therapy and occupational therapy, no real routine at all.

Autistic twins Tommy and Henry Cully

But life with autistic kids make you nothing if not resourceful and adept at a range of coping strategies and, aside from watching re-runs of The OC when my children are asleep, here are some of the things that have been getting us through those long, long days.

One of the twins is fastidious about cleaning so I bought a couple of cheap spray bottles from the supermarket and fill them with water and a few drops of food colouring and give him a rag and let him loose on the house and fence to do his “cleaning”. The food colouring doubles as a way to teach him about colours (and if it’s blue they think it’s the real cleaning stuff and are less likely to try and raid your stash under the kitchen sink).

Chalk has become my greatest, deepest love through this lockdown, I love it more than season one Seth Cohen from Orange County. We use chalk to write letters and numbers outside on the footpath or paved area (outside house walls and fences work well too) and go over the alphabet and practise counting. It’s a great way to get the twins outside and stop them trying to escape up the driveway, I just rattle the chalk and they come running back to see what I start writing on the ground.

Torches are an old favourite we have been playing with lots. I try and be a Pinterest mum and print off different ways to make shadow puppets but to be honest they have the most fun when they grab a torch and shine it into our eyes, laughing with delight. Temporary blindness is worth their happiness.

A day in the life of four year old autistic twin boys Tommy and Henry Cully

Cardboard tubes are our friend through all of this, and thanks to all the toilet paper lurking in the pantry we have more than enough to go around. I dump a bunch of them on the ground and they become tunnels for toy cars, telescopes, or simply something to roll down a hill.

Balloons and crepe paper streamers (mercifully sold supermarkets) are a cheap and cheerful way to keep my twins happy for hours.

They will unwind the streamers all over the house, and you can use this time to talk about all the different colours in the roll. With the balloons we do this thing called “Crazy Balloon” where we blow it up and count down from 10 and then let it go whizzing all around the room while they laugh until they get hiccups. They will also take two blown up balloons and jump up and down on their bed for ages.

The best advice I ever got about the twins and their play was to “let them lead”. Before the lock down I spent about three hundred billion dollars stocking up on toys and arts and craft supplies and stuff to keep them occupied and most days they have made their own fun, like the time they filled our expensive fire pit with water and rocks or when they picked all the apples off the tree and lined them up around the garden in perfectly straight lines. Or they dig out their old faves like Mr Potato Head or a wooden train set. Save your money and buy a mid-shelf bottle of wine instead.

Angela Cuming with Henry, left, and Tommy, right.

To get the twins to run off some energy I pull out the big guns and organise games of chasing outside. It is perfect because I get to sit down and say “one, two, three, go” and aside from knowing that somewhere out there the twins’ speech and language therapist is crying tears of happy pride that I actually paid attention in therapy sessions, it means they run around like mad and get tired out but keep wanting to do it over and over again until they eventually crash and burn and sleep. If there are other siblings around even better. I bribe the twins’ big brother Charlie with Oreos to make him play chasing with them and even though he always wins the twins don’t care because they haven’t a sliver of a competitiveness between them. It’s a win-win.

Speaking of outside I also let the twins play in our parked car (supervised of course). This is also great for when it’s raining. They can sit in that car for hours, pulling at all the knobs and levers and putting the hazard lights on and off. I am sure one day they will leave a light on and we will get a flat battery and my husband will give me that “told-you-so” look but as this as day 7643 billion of lockdown I am willing to talk that risk.

Tommy chases big brother Charlie

My greatest fear isn’t the lockdown being extended, it’s losing the charger for the iPad and not being able to give the twins screen time. I have always used screen time to keep them calm and happy and entertained, and that has ramped up a bit during the lockdown. I have zero guilt about this and neither should you. These are bloody challenging times, for our kids and for us, and sometimes you just have to do what you have to do to make it through the day. But having said that screen time can be hours of fun for kids, and there is some great content out there. My twins have pretty short attention spans at the best of times, but they will happily watch Sesame Street clips, In the Night Garden or Little Baby Bum until they are sleepy and it’s time for bed. I also google things like “number counting autistic” and lots of great little videos come up that are tailored for autistic kids.

We also try and make screen time a whole family event. We go into a bedroom and stick the iPad up high on top of a set of drawers or something and put on videos that encourage lots of movement and singing. There’s a great kids’ group from American called Koo Koo Kangaroo (also found on the Go Noodle YouTube channel) and they do awesome novelty songs with great dance moves that the twins love. We also put on video clips of roller coasters and the twins go to next-level excitement and start jumping around on the bed and pretending they are on one.

Tommy on the iPad, top, Tommy and Henry, sharing the iPad, bottom.

But the single most important thing to remember through all of this is that we as parents are enough. We are all our kids need through all of this and, like the relevance of Mike Hosking or the fashion credentials attached to jeggings, this lockdown too shall pass. We need to be kind to ourselves. We will have bad days, but the good thing about bad days (and nights) is that they eventually end. It’s okay if your child is on an iPad for hours at a time. It’s okay if they eat biscuits for dinner and you skip a teeth brushing here and there. It’s okay if you are all in your pyjamas at 11am and you sneak off to the pantry to eat an Easter egg and have a wee cry.

None of us have ever been in a situation like this before and all we need to do right now is make sure our kids are fed and watered and safe until this thing is all over.

The only thing our children will ever really remember from this (aside from how awesome it was that there was no school for ages) is how we reacted to it, so we need to go easy on ourselves and be find joy in things like not having to make 3651 million school lunches for the next wee while.

Dr Ashley Bloomfield, Director-General of Health

So take a deep breath and know that yes, Dr Ashley Bloomfield thinks that yes, you are New Zealand’s Best Parent Ever because your children love you more than you will ever know and Dr Bloomfield really, really wants you to go and eat that last chocolate egg you had been hiding in that top kitchen cupboard.

  • Angela Cuming is a Dunedin-based journalist and mum to three boys, including four-year-old autistic twins. She has not slept in seven years and may one day get around to washing the mystery basket in the corner of her laundry.

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