How I parent my autistic son solo, run a business and thrive (mostly)

by Susie Hopkins

Parenting a child by yourself is tough. Parenting a child with special needs by yourself is even more so. People often ask me how I do it. They even call me a super mum and generally admire how, for the most part, things are going really well. But they only seeing part of the story. Naturally, I have my moments, as we all do.

In July, Harry will be seven. When he was four we found out he is autistic and has substantial support needs. Then, late last year we also found out he has ADHD. And on top of this, Harry also has dyspraxia, auditory and sensory processing challenges.

For more than two years, mostly during his toddler years, life was a living hell. I had no idea how to meet his needs and his terrible twos were exacerbated by his insane food intolerances and serious sleep problems. I don’t use the term living hell lightly, but it was an extremely difficult time. Once we got the food intolerances sorted, his sleep under control and started meeting his sensory needs we turned the corner.

Despite teaching stress management for a living, this was such an incredibly stressful time for me. I can’t for the life of me imagine how traumatic this time would have been if I didn’t continue to practice what I teach (I don’t preach). By using stress management strategies morning, noon and night, and prioritising my own wellbeing, I was able to stay relatively sane.

While these strategies definitely took the edge off,  breathing and other practices can only offer limited relief when your child is clearly suffering so much. Some days were harder than others. Often there were as many as eight meltdowns a day that could last half an hour or more.

Luckily for me, I am really disciplined when it comes to healthy living. I don’t see making healthy choices as optional. If I don’t look after my wellbeing, I know everything could very easily fall to pieces.

If I didn’t, I don’t know how I’d cope on the bad days. And there are bad days. Bad days tend to happen following nights of poor sleep and after days of struggling at school. And more so on the days following poor sleep in combination with hard days at school!

Bad days happen though, for all parents, everywhere. Thankfully, they have become less and less frequent as time has passed. I am so incredibly grateful that Harry and I are both doing great, for the most part anyway.

To enable us to get to this point, I live by some key principles and practices.

  1. Connection above all else

This is easily the number one principle I live by. Our connection is more important than any house-hold rule, therapy, developmental milestone or anything else for that matter. Of course, this doesn’t mean I don’t slip up sometimes. Sometimes, with a short fuse, even the best intentions fail. But I prioritise our connection above all else, no matter how bad things have gotten over the years, we have always had an incredibly strong connection.

I believe displaying unconditional love and affection every single moment of every day, as much as possible, is extremely important for my son’s wellbeing. And when he’s doing well, it translates into me doing well.

This principle is equally important for other relationships in my life, not just with my son. I make a conscious effort to nurture my closest friendship. We spend 4-5 hours on the phone a week (!). I have no idea how I would have survived the last few years without her. She lives nearby but also has a demanding career and kids so we don’t see as much of each other as I’d like.

I also prioritise other family and friends. Human connection, in my mind, is the single most critical pillar of mental wellbeing. For both our kids and for us.

If I had a partner (it’s on my to-do list 😉) or Harry had siblings, I’d be prioritising quality time with them as well. We should never take our closest connections for granted. They need to be consciously nurtured at every opportunity.

  • If I’m in a heap on the floor I’m no use to anyone

This means that I prioritise my wellbeing as a non-negotiable part of my lifestyle. I try to exercise as many days of the week as I can for at least 20 minutes. I have varying success, but I usually manage to exercise at least four times a week. Bushwalking, strength training and yoga are my favourite forms of exercises.

Occasionally, exercise takes a backseat during a particularly hectic period. If one of us is not well, for example. I recognise these natural cycles of sticking to health routines or not depending on what’s going on and if I slacken off for a while, I resolve to get back to it before long.      

I also make sure that sleep is a priority. I try to make sure I am getting a minimum of seven hours a night – hopefully eight or even nine (doesn’t happen very often…). After 7.30 pm, I only use low light and a ‘no blue light’ lamp. Screens are always on night mode and (almost) never used after 9 pm. Blue light from screens and regular globes can really interfere with sleep. I sometimes struggle to get a good night’s sleep so I’m extra cautious.

I pay close attention to managing my energy levels too. I don’t overcommit and for the most part, I have a quiet life. And I love it this way. I used to socialise a lot but, now more than ever, a quiet lifestyle is so important.

I manage my diet daily. It’s perhaps about 90% healthy and 10% naughty – I am a sucker for sweets! The only way I can maintain a healthy weight is to have very few simple carbs. I also try to minimise the numbers (additives) in my food – nearly everything is homemade. It’s a lot of work but food intolerances have been an issue for us so we really have no choice.

I drink very little alcohol. Alcohol really doesn’t help and it’s often just a Band Aid fix. The immediate effects might feel like it helps, but alcohol doesn’t help with stress. The science is clear on this. I know I can’t afford to feel terrible after one too many. I’m by no means a teetotaller, but I make sure I only have a couple of drinks on occasion. It makes such a huge difference to my clarity of mind. That’s not to say enjoying a drink or two is problematic but I make sure I never use it as a crutch.

  • Living a mindful life is living a good life

Developing present-moment awareness is, in my opinion, like getting a user manual for your mind. Meditation and yoga helped me turn my mental health around years ago. After over 20 years of intermittent bouts of depression and anxiety, learning to be mindful was an absolute game-changer. I meditate every day, though I’m flexible in terms of timing and how I practice. If I get to bed-time and I haven’t meditated, which happens sometimes, I will do a brief meditation before bed.

But as well as living life with as much awareness as possible, living a mindful life means cultivating an attitude of non-judgement and continually practicing compassion, understanding and kindness. These attitudes are even more important towards myself than towards others. In other words, I am an expert at cutting myself lots of slack ALL the time!

Self-compassion is so important when facing challenges and I practice it all the time. I have worked hard to develop a sense of self-worth that is very robust. For these reasons I never feel guilty for prioritising my own needs. My needs are my son’s needs. When I am thriving, I am better at meeting his needs.

  • Practicing acceptance, watching “shoulds” and managing expectations

Closely related to non-judgement is acceptance. I completely reframed my expectations in terms of my son’s developmental trajectory a long time ago. He is magnificent just as he is. The fact that at almost seven, he is still developmentally three in some areas/capabilities doesn’t cause me any grief at all any more.

I have come to accept autism as difference as opposed to disease. This is just one example of applying this principle. So much mental torment comes from the belief that life should be a certain way. That things should be different to how they are. Stress is often the discrepancy between how we think things ‘should’ be and how they actually are.

That’s not to say that it’s not perfectly reasonable to wish things were easier – it’s important to honour these feelings and be kind to myself when they crop up. (And they do crop up). But acceptance is a muscle and I actively strengthen it. I think  this helps me feel like I’m not constantly fighting against the current.

Having realistic expectations also extends me – making sure I am not trying to fit too much in, too much research, therapy, or strategies. (I need to work on this more though, right now is crazy…) We can get weighed down in keeping up appearances and I know I do it more than I would like despite being aware of it.

Society puts so much pressure on us to have it all together all the time. So, I try not to feel pressure to portray that I’ve got it together all the time. I find that it makes everyone else feel like it’s OK to not be perfect too.

  • Don’t hesitate to seek help and support

This is so important! I learnt this early on, when things were a living hell. After one visit to a developmental paediatrician, two years of horrendous sleep patterns were resolved (apart from the rare tricky night). I couldn’t believe it! I know lots of other problems are more complex but the fact remains, there are answers to whatever problems you’re experiencing out there. Don’t stop until you find them.

This is also critical when it comes to managing my load. I used to resent that family members didn’t help more. Couldn’t they see how hard things were? But they couldn’t. Others can’t possibly know what we’re going through. We need to tell them. I no longer wait until I burst into tears in desperation before getting help from family.

I also have a cleaning lady. Despite constant financial pressure I see it as essential support. I think women often feel that we can’t get this kind of help because it’s too extravagant. And there is this crazy notion that we simply should be able to manage it all. The $45 I spend on a 1.5-hour cleaning session each week is the best investment I have ever made. I see it as an act of self-love.

  • Knowledge is power

I’m an information junkie. While I know that doctor Google can be problematic, I am lucky because as a health professional I can decipher quality information from nonsense. And it’s not that difficult as long as you arm yourself with knowledge and take into account the source of the information. Government, tertiary institutions and reputable not-for profits often have excellent information.

I only use Facebook groups for recommendations and ideas and never for information that should be based on the best available research. Unless posts link to this kind of information or I know the person posting has specific expertise in the area, I won’t use them.      

I have also found that by far the best way to understand my son’s needs is to ask autistic people about their lived experiences. Getting a wide range of views is important for a well-rounded picture as our knowledge evolves from many different perspectives.

  • Do the deep work

The inner work I have done has been absolutely paramount for me being able to get Harry and myself to a place where life is good again. Being psychologically well, means that I can model coping strategies to my beautiful boy in a much healthier way.

For all parents everywhere, regardless of their situation, it is not easy to meet your children’s needs. And when our kid’s needs are more complex than most, we experience so many additional challenges. If we are to rise to them, we must ensure our own emotional wellbeing is a priority.

Intergenerational psychological and mental health issues have impacted my mental health a great deal. I have had to do a lot of soul searching, psychological counselling and personal development work to have arrived at a place where my psychological health is better than ever.

  • Do things that make my heart sing

Coping well is not enough. As much as possible, I find time to do the things I love. If my cup is full to overflowing, I can dig deep when I need to.

Dancing, singing, writing, bushwalking and gardening are my favourite activities and I intentionally make time for these activities as often as possible. Thankfully I write for work quite a lot and I often dance with my son, with total abandon, with the music up loud, in our living room. He’s getting big enough now to do a little bushwalking these days too and he simply adores being in nature. It does him the world of good too. 

Sometimes, I also take three hours out of my workday to do a two-hour hike. When I do, there’s no doubt that I work more effectively for the rest of the week!

So, there you have it. Most of the time, my life is too full. But for the most part,  I manage to look after myself as well as my son’s complex needs. It is possible, if you are very intentional in how you live your life.

I like to compare myself to an athlete. And like all good athletes, we need to focus on our ‘recovery’. At times, life does feel like a marathon and if I’m in a heap on the floor, I’m no use to anyone.

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