There is nothing scarier than your baby going stiff and turning blue as they gasp for air. This seizure was how I first found out that there was something wrong with my beautiful 5 y.o. boy Harry. When I decided to have a baby solo, I knew it would be hard but I certainly didn’t realise just how hard.

Health

Parenting a child with autism solo (while trying to build a business…)

By Susie Hopkins

June 30, 2020

From surviving (just) to thriving.

There is nothing scarier than your baby going stiff and turning blue as they gasp for air. This seizure was how I first found out that there was something wrong with my beautiful 5 y.o. boy Harry. When I decided to have a baby solo, I knew it would be hard but I certainly didn’t realise just how hard.

Sometimes when I kiss him goodnight, I still can’t believe how close I came to never experiencing motherhood. Even though it has been hard, I thank my lucky stars and I’d do it all again.

I first tried IVF when I reached forty and still hadn’t met that ‘special someone’. I remember so clearly how devastated I was when I got my period after the third, and at the time my final embryo transfer.

So, I did the only thing someone who’s completely devastated can do: pick myself up and try to get on with my single, fancy-free life.

My child-free, single life

I spent the next three years as a backing singer in a band, touring and gigging. Though this was the definition of ‘fancy-free’ fun, I was pretty miserable, and not just because of being single and childless. For years I had suffered from horrendous anxiety and bouts of depression. I coped by self-medicating, drinking too much, among other things, and partying to distract myself.

Thankfully, I also intermittently tried to look after myself—exercising in spurts and doing lots of yoga, although, I never really got yoga completely.

Turning my mental health around

I've lost count of the number of counsellors I saw. But when I went to India, like so many anxious and stressed people before me, something clicked. I didn’t set out to ‘find a guru’ or even to become a yoga teacher: I wasn’t really on a spiritual journey.

I had a bad back and figured that yoga teacher training would be the best way to both understand yoga and help with my pain. I was genuinely surprised when the horrible ruminations and anxiety pretty much stopped.

But there was no doubt about it: living mindfully and practicing meditation daily saved me from myself. I remember telling people “It’s as if every part of the jigsaw puzzle just fit together.”

Having been seeking a remedy for decades, I was absolutely hooked on this new-found way of living. I started teaching yoga and was obsessed with learning as much as I could about mindfulness—listening to podcasts, reading books and learning from my amazing yoga mentor.

Finally becoming a mum – the best days of my life

After India and touring with my band in the UK (though I didn’t party hard as I was over the lifestyle by now) I decided to give IVF another, final, shot. Incredibly, the first embryo transfer worked.

When Harry was born, though, things were tricky from the very start. I was the happiest I had ever been, but feeding was so hard. I had to be completely still, sitting bolt upright.

Because Harry was so tricky to feed, we hardly went out. He had lots of gut issues and was diagnosed with cow’s milk protein allergy at six weeks old. He slept well, though, and was mainly a very happy baby. Then when he was one-year-old, he had his first big seizure.

Things got really hard

Even though he was incredibly stiff I managed to get him out of his high chair and to call an ambulance. This was the start of a nightmare.

He had terrible gut issues and would be writhing around in pain in the middle of the night, and I would have the phone ready to call an ambulance. Over the next 14 months, he had four seizures. It wasn’t until later that I discovered seizures are common in kids with Autism.

The ‘terrible twos’ were hell on earth. Tantrums were so incredibly out of control. He was literally like a wild animal. I can’t describe the nerve-shattering experience of him thrashing around, crying, as I tried to get him into the car seat or pram.

Around the same time, sleeping for him became a nightmare. He would literally be jumping, spitting, crying, smashing his body around, and it would take 1-2 hours to settle him at night. He’d wake again at 1 am and not go back to sleep.

Eventually his childcare said they were concerned there was something going on developmentally.

The only way was up – seeking help

Under the guidance of a dietician, when Harry was three, we changed his diet. This made a huge difference. So did seeing a developmental paediatrician a few months later, as she helped us get on top of Harry’s sleep problems.

During a long diagnostic period, the Occupational Therapist gave us strategies to help Harry regulate his sensory processing issues. So, by the time we got his diagnosis of Autism at four and a half we were in a much, much better place. That was a little over a year ago.

All this time, I’d kept up my meditation practice and exercised when I could, and had been building my own business. I got some great clients and consistent, incredible feedback about the work I was doing, bringing stress management and mindfulness into other people’s lives.

Finally we are thriving

Although there are still challenges that we face together, finally, we are both thriving. One of the silver linings of all these challenges is that I can relate to others who are facing incredibly challenging, stressful times more than I ever could before.

All of the strategies that I share with others to manage stress have been tried and tested under extreme circumstances! And when I kiss him goodnight, I’m not just grateful for his extraordinary mind and his love and affection—I’m grateful that we are flourishing and can enjoy our life together once and for all.