Adjusting Your Priorities

How do parenting priorities change when you have kids with special needs?

To do list on diary and coffee cup on wooden table

The mechanic rolls his eyes at me. “Your windscreen washer fluid is empty.”

And then he gives me The Look.

Ah, The Look. I’ve seen it many times before – from school teachers, neighbours, my hairdresser – so I know exactly what it means… How can I forget to do something as simple as replace washer fluid? Or mow the lawn or get my hair cut or make a costume for the school play? Clearly I must be lazy, incompetent or just plain stupid.

There was a time when The Look felt like a punch to the stomach. The injustice of being judged simply because I had a different set of priorities than everyone else, combined with the frustration of knowing that I couldn’t even correct the misconception because, let’s face it, where would I start?

Despite the fact that I was working harder than I had in my entire life, to them I was the loser in the mismatched socks who was too lazy to put on a clean shirt. Ouch.

The worst part was that I started to believe it. My dog’s hair was in knots, the mortgage was overdue and I couldn’t remember the last time the kids had eaten a vegetable. By all the standard measures of competency, I was failing. So I tried harder, worked more, slept less. And perhaps unsurprisingly, failed still. It was a dark, confusing time.

The turning point for me came during a visit to a dietician, in a desperate bid to appease the Eating Gods. I thought maybe some supplements or a vitamin shot would make up for my son’s extreme selectiveness when it came to food.

Dr Diet:  Now what kind of things does he eat?
Me:  Crackers.
Dr Diet:  Yep. And?
Me:  That’s it.

Pause. Here it comes, The Look…

Dr Diet:  Okay. Good. At least he eats something, right?

I cocked my head to one side like a dog that’s just seen TV for the first time. She laughed and patted my knee, and I wanted to leap off my chair and hug her but instead I burst into tears and blubbed something like CRACKERS FAILING BAD PARENT NO VEGETABLES!

Then she floated up from her chair and grew a long white beard as a glowing light shone from around her head. It’s possible I remember that part wrongly, but this bit I’ll never forget… she said “Eating is our priority for now. Healthy eating comes later.”

God I wish someone had said that to me earlier.

It seems embarrasingly simple now, but it wasn’t then. Because we all come into parenting with a set of priorities based around what we think kids need –  a good school, balanced diet, lots of friends, plenty of sleep. Then you find out your kids have other more pressing needs and it quickly becomes obvious that those priorities may no longer apply.

You suddenly have a whole set of new stuff on your To Do list, and nobody ever tells you what to do with those old priorities. Do they still apply? Are they overridden by this new stuff? And if so, is that okay?

Because it sure doesn’t feel okay. Everything around us (the media, baby books, other parents) is geared towards that pre-autism set of priorities and our parenting skills are judged by how much attention we pay to them. I had been killing myself trying to parent to a set of priorities that didn’t even make sense for us, ones that were made for someone else. And I hadn’t realised it until that day.

So how do you adopt a new set of priorities without feeling like you’re doing something wrong?

How to adjust your priorities

Go back to basics

Make a list of the fundamental priorities in each area of your life – the things that you absolutely have to get done to survive. You need a roof over your head, food in your belly, sleep and… nope, that’s pretty much it.

Then make another list – the next layer of priorities. Keeping everyone safe, putting fuel in the car, earning a living, making it through the day with your sanity intact.

Then another layer – speech therapy, finding a school, toilet training. And so on.

On any given day you have a finite amount of resources to handle the things on your lists. Start at the top and work your way down until you run out of gas in your tank. On some days, you might not get past ‘food in your belly’, other days you might make it all the way down to replacing the windscreen washer fluid.

Don’t worry about the things down the bottom

There’s going to be a lot of stuff on those lists, and you’ll be surprised how many things come before ‘getting the kids to eat vegetables’. As time goes on and the kids progress you’ll find yourself being able to bump some of the older priorities off the list to make space for new ones.

So don’t spend time worrying about the things you don’t get around to tackling today, no matter how big they are… one day they’ll make it to the top of the list.

I have some huge things down the bottom of my list, things that are probably at the very top of somebody else’s list. But the fact that they’re on the bottom just means that I’m dealing with some pretty major stuff here, so I look forward to the day when those things finally become a priority – it’ll mean that I’ve already kicked some serious butt and that’ll give me the confidence I’ll need to keep going and kick some more.

Be okay with your list

Don’t force yourself to parent to a list that was made for someone else. Your priorities aren’t going to look like anyone else’s, and that’s exactly how it should be. It doesn’t make you a bad parent, you’re not failing at anything and you don’t need to justify your list to anyone.

Make peace with The Look

Most people are never going to understand how anyone could have a list that looks like yours. They’re going to assume that your top priorities are the same as theirs, and yes they might think that you’re lazy, incompetent or stupid if you can’t attend to those priorities. But you know what? There’s absolutely nothing you can do about it.

People are going to judge you based on their own experiences and those experiences probably don’t include autism. So try not to take it personally and be confident in the choices that you’re making for your own family.

The bottom line

Adjusting your priorities – and learning how to be okay with that – is one of those things that can really make your life a whole lot easier. Having a clear set of goals that you’re comfortable with gives you a sense of confidence that helps protect you from feeling like a failure (and that includes letting anyone else make you feel like one).

It took me a really long time to be able to say something like that without feeling embarrassed or defensive, and to handle The Look with the standard ‘smile, nod and ignore’ response that I use now. I’ve got important stuff to get done here and I simply don’t have the time or energy to care what anyone else thinks about the way I’m doing it.

And if there ever comes a day when empty wiper fluid is at the top of my priority list then I will smile, nod and gladly tell the mechanic to go to hell, secure in the knowledge that it will have already frozen over.

Last updated 24 Nov, 2017 by Bec Oakley

Bec Oakley is an autistic writer and proud parent, with an intense passion for 80s text adventures, Twizzlers and making the world a better place for autistic people and their families.