One of the most important, and underrated, skills that an autism parent/carer has to have is the art of staying positive and persevering through the hard times. Sometimes it happens by itself, when life gifts you one of those wonderful moments – your little one makes a big step, or says ‘I love you’, or maybe plays with their sibling for a few minutes without anyone having a tantrum. But a lot of times will be hard. The funny thing is that the great ones often follow the worst times. But meanwhile you still have to survive the bad days when no progress is made and you’re just trying to survive until bedtime.
As an autism parent you can get caught up in how different your life is to how you pictured it. You probably don’t get a flashy career, because you’re busy looking after your child. You possibly don’t get that big family around the dinner table teasing each other thing either. Not only do you not get to have ‘it all’, you might get to have nothing, as ‘old you’ would see it.
But of course if you only compare yourself to what you think other people have, you’re going to be unhappy. Having a child with special needs has nothing to do with it. It is just how our brains work.
You can look at any life and say ‘gee that’s tough, there’s nothing good going on here’. Or you can do what I call a ‘brain shift’ and look at it from the other side.
Take me. I could look at my life and decide that the universe hates me and has a personal vendetta against me.
I started as a child of poor immigrants, who were very strict with me. Since I was alone a lot, I studied and practiced my music all day since I was 12, to keep my scholarship. Then had to work my butt off at university. My mum was diagnosed with breast cancer when I was 13 and as an only child a lot of the caring fell to me. Then she passed away when I was 19.
I moved out of home at 21 and had to study while working a lot to pay the bills. Then I finally finished my six years at uni, got the job I wanted and got married. My life looked like it was getting better. Right? Wrong! I have a baby ten months after I get married who is incredibly difficult, doesn’t sleep, and screams all the time. Despite this I work on getting my Masters and going to College of Law. Four weeks before my final exams my son is diagnosed with autism.
After this diagnosis, I leave a job that I loved very much and spend my time doing therapy, and dealing with all the challenges that autism can bring. My son can’t talk and has problems even being near other children. He will very possibly never graduate or go to university. At this stage I would be surprised if he learns to read or write. And since it’s genetic, if I have any other children I have a ten times higher chance of them having autism as well.
This is one way of looking at my life. It is the way I look at it when I haven’t had enough sleep or have had a particularly difficult day with Michael. But if I’m more or less rested and have had the appropriate amount of chocolate the story looks different.
I was really lucky when I was little. My parents left Russia, where life was very hard in the 90s, and came to Australia. The lucky country. I got to go to some fantastic schools for free. First the public schools, then I got a scholarship to one of the top private schools in Sydney. That’s like winning the lottery! I made some great friends for life at school.
I had private singing lessons, maths and English tutoring, and never had to share anything because I was an only child.
My parents both worked full time so I became very independent and self sufficient. I had great role models in my parents who were both intelligent and hard-working, and loved me very much. My mother in particular was my best friend. Sadly she passed away when I was 19. It was a tough time for me but with my dad’s help, and the support of my friends and family, I made it through.
I was very lucky during uni as well. I got a part time job at a law firm that gave me invaluable work experience and meant that I got my dream job when I graduated from uni. When I was 23 and finishing uni, I met a very special young man who I fell in love with in about five minutes flat. Luckily, he kind of liked me too, and we started dating. Ten months later, he proposed and a year after that (just before I turned 25) we got married. After three and a half years of marriage (and many of these came with some seriously challenging moments) he still lies to me and says I’m pretty when I haven’t brushed my hair or put on make up in the morning.
But the luck didn’t end there. We also have another little human in our lives, named Michael, who is the light of our lives. From the moment he was born he was the most beautiful, charming and happy little boy (despite his constant screaming). While it was a challenging time when he was diagnosed with autism, he has made steady progress with early intervention because luckily he was diagnosed very early. Our family and friends have been a great support to us and fight over who gets to babysit him when my husband and I want to go somewhere.
The skills to do this ‘brain shift’ are something that I have worked on in my life. Some of it comes easier to me, it just seems inbuilt in my personality. But some of it I work on, with the help of a book called The Happiness Hypothesis by Jonathan Haidt.
I have written before that carers need to look after themselves first. Autism parents can be under the same amount of stress as soldiers in combat (I read it somewhere so it must be true). Here are some ways of looking after yourself and getting through the tough times.
One: Make Sure You’ve Had Enough Sleep
The single most important thing about dealing with any kind of hard times is being well rested. I know this can sometimes feel as unattainable as being able to sit down and have a whole cup of tea while it’s still hot and without interruption. But often it is achievable, if you really prioritise it.
Sleep is essential for your functioning. It is more important than having a clean house, or doing the laundry, or your husband’s cricket watching. This comes first. It comes before exercise, before food. It heals and repairs your heart and blood vessels. A good night’s sleep improves learning. Without sleep you may have trouble making decisions, controlling your emotions or behaviour, and coping with change.
If you need to sleep train your child, or get them on melatonin, or some other medication, sort this out first. Fix those respiratory problems (many children with autism suffer from undiagnosed sleep apnea). Make sure their sleep environment is clean, allergy-friendly, quiet and dark. Our white noise machine has saved us – it means Michael has constant slight noise in his room, so no sudden noises outside (birds singing, the house settling, us talking) will wake him.
It is possible that sleep will be a work in progress over possibly many years. In that case you and your partner should take turns as much as possible. My husband and I sleep in separate rooms and he has white noise on in his room so he can’t hear Michael at night. So one of us will be up at night and the other will get up in the morning so the first one can sleep in.
Two: Look After Yourself
If I’m having a tough day, I prioritise myself. I know how many hours of being alone with Michael I can handle, and I try to make sure there is someone else around to give me a break. He doesn’t go to school yet, but he does a lot of therapy. Those afternoon therapy sessions are a great time for me to do something not Michael-related. Then when he comes out of therapy I am fresh, rested, and I’ve missed him so much that even if he has a tantrum immediately over dinner I can handle it. And still make him eat his vegetables.
There are many people around that help me and I’m lucky with that. There’s the therapists, there’s my family and my husband’s family. I use them all a lot more than I ever thought I would. I’m one of those people that has always resisted asking for help. I always want to do everything myself. But now if someone wants to sweep my backyard I don’t say a word. Instead I give them the laundry basket.
Three: Take It Easy
Some days, you just have to go it alone. All the therapists are sick. Your child is sick. You are sick. At heart. And all you really want to do is curl up under a blanket.
Unfortunately Michael still insists on eating three square meals a day on the ‘tough days’ and the laundry basket is still full. I’m pretty sure there is a fairy that secretly comes and fills up my basket every night while I sleep.
It’s always on those days that Michael wakes up at 5am and refuses to go down for a nap. When he might have a micro sleep and then I will spend hours and hours trying to get him to sleep. I have had days when six hours out of twenty four were spent on this fun activity.
On those days, screen time limits are out the window. I do less therapy hours and more running around at the park hours.
What helps me is to split my time up in my head. I have ‘super parent’ time – two hours in a row of therapy and intense play. Then it’s ‘normal parent’ time, where I have a cup of tea or do my chores while he runs around.
No cooking happens on that day and I don’t feel remotely guilty about ordering in. No heavy cleaning. Very little of any kind of cleaning in fact. On these days my house looks it belongs to Penny from Big Bang Theory if she had a toddler or cooked.
Four: Make Day To Day Life As Easy As Possible
Hello my name is Julia and I am addicted to frozen vegetables. Seriously those little packets are a life saver for me. What’s not to love about them? They are vegetables that have already been cut up for you into bite size portions. They’re cheap. They’re healthy. You can buy them in any combination you want. Short of also dancing and singing for you they do everything possible to make your life easier.
I do make an effort for dinner. I know frozen vegetables aren’t the tastiest choice – although with the addition of some nice sauces, they can be yummy. But for dinner I make a ‘proper meal’ where I have to actually cut things up and mix them and then cook them at different rates. Sigh.
Because I will never pass up an opportunity to be lazy, I have all my groceries for my ‘proper dinners’ (and all else) delivered to my house. Why should I organize a sitter for Michael or brave a supermarket with a screaming toddler when I can have it all brought to me, for free?! Home delivery is the best side-effect of the internet age. Online shopping is a close second.
I get all of Michael’s clothes, books and toys online. All our fruit and veggies from the local grocer delivered. Soon, I will be getting all my supermarket stuff delivered too. The only time I go to the shops is to get some fresh milk or bread, or go to the fancy butcher if I’m making something special (for Prince Michael of course).
Frankly, there’s enough to being a super parent without getting bogged down in the weekly shop or spending all day cooking.
Five: If You Need It, Try Professional Support and Medication
It is important, if you are a carer, to acknowledge that we need help. If you do feel overwhelmed, professional support is there for you.
We commonly suffer from things like anxiety and depression. Some common symptoms of anxiety are:
- Feelings of panic, fear or uneasiness
- Problems sleeping
- Cold or sweaty hands or feet
- Shortness of breath
- Heart palpitations
- Not being able to be still and calm
- Dry mouth
- Numbness or tingling in hands or feet
Some common symptoms of depression are:
- Difficulty concentrating, remembering details, and making decisions
- Fatigue and decreased energy
- Feelings of guilt, worthlessness, and/or helplessness
- Feelings of hopelessness and/or pessimism
- Loss of interest in activities or hobbies once pleasurable, including sex
- Persistent sad, anxious, or “empty” feelings
If you are feeling some of these it is important to get professional help from a psychologist and go on medication if necessary.
Six: Know Where To Go For Help
There are always sources of help for carers, and often we ignore these sources and continue to do everything ourselves. There’s family. Remember, if they do everything wrong and you can’t trust them – you can always get them to help out while you’re present. Then after a few months of teaching them the right way to do things, they can become an invaluable resource.
There’s respite services offered to carers in most countries. Use them.
There’s neighbours, there’s friends, there are psychology students that would love to learn about autism by babysitting for you. Sometimes they even volunteer. Other times you can pay them about $20-$25 per hour.
I am the worst offender when it comes to ‘soldiering on’. I often say ‘no I’m fine’ when people offer to help, and I probably am fine at the time. The trick is to get help as a way of maintaining yourself. While everything is still fine, not once it’s all crashed and burned. It’s like refilling your tank before your car stops in the middle of the road.
If you’re looking after yourself, the tough times will come and go. Your system will be able to deal with them. If you are already running on empty when a day like that comes up, you may find yourself stuck in the middle of the road with the hazard lights going.