When my son Jude was born I had a pretty clear vision of the future, of what being a dad would be like, and the sort of parent I’d be.
I couldn’t wait to hear him say his first word. To play with him, to watch him grow. To rush home from work to spend time with him, and read him a story every night before bed. As he’d get older I could already imagine all the fun days out we’d spend, seeing the sights of London, exploring museums, visiting castles.
I’d teach him how to play tennis, football, and we’d join the local sailing club. We’d go to the cinema, go to school friend’s birthday parties, spend days at the beach. We’d visit family and friends on the weekend, our social lives would be hectic! We’d have amazing holidays together, and I’d get to show him the world
Life hasn’t quite turned out that way.
Being a parent has been completely different than what I thought. There’s been no first words or reading stories out loud. There’s been no museums, castles, or sight-seeing. No tennis lessons, football teams, or learning to sail. Visits to friends or family are at a minimum, no parties to go to. Our social lives are very low key, non-existent almost.
Jude was diagnosed with autism at 18 months old, and our lives have taken a very different path instead. Three years later my second son, Tommy, would also be diagnosed at 18 months old. Life felt like it couldn’t get any worse. This certainly wasn’t part of the plan.
I knew nothing about autism back then apart from the film Rain Man. I had no idea what to expect, or what it would mean for our lives in the future. I didn’t know just how much life would change, or how much they would change me.
When the word autism first came along it was scary, confusing, incredibly emotional. The emotional struggle of coming to terms with how different life has become, the jealousy of feeling like your kids are missing out, the fact that life seems unfair, all can weigh heavily. I never knew it would be so hard.
Jude is now 10, and Tommy is 7, and it’s been a roller coaster of a decade. Both of my boys are non-verbal, both have sensory challenges, and both need 1-1 care all day every day.
There’s been some incredibly challenging periods
Seeing my boys struggle each day, watching them have meltdowns, self-harming, or being violent towards me, has been the hardest experience of my life. At times it’s been heart-breaking.
To make things even more complex, Jude has always really struggled around his brother, so much so that he is often a trigger for his meltdowns. When their mum and I separated a few years ago we decided to change things up. Now we look after one boy each, and swap every couple of days. It means they spend very little time together, but it gives them the 1-1 care, the attention, the space, and the relaxed environment they both need to be happy.
It’s made life logistically challenging, but the difference in how happy both boys are, particularly for Jude, has made all the sacrifices worthwhile.
With all of that going on I found myself feeling very down. As if life had treated me unfairly. Why couldn’t things be easier? Why did everything have to be such a struggle for them?
I started to view the world differently, and begun to make changes.
Firstly, I learnt to let go of how I thought life would be. I found a way to adjust, to see the beauty in the life we have. Being Tommy and Jude’s dad I’ve learnt to really appreciate the simpler things in life. To celebrate each step forward, and see the wonder in every achievement no matter how small. I know just how hard my boys work every day, just to be able to cope with the world around them, the least I can do is appreciate that fact.
My visions of playing sport every weekend with them have long gone. I’m now a parent who will bounce on the trampoline, sing songs, massage, squeeze, rock back and forth, blow bubbles, build puzzles, rip paper, jump, pick them up, and splash all day. A parent who will do the same things over and over, day after day, week after week, because that’s what makes them happy. That’s what they want to do. What I wanted to do as a dad doesn’t come into it.
Being their dad and spending time with them every single day has made me into a much better person than I was before. I’m now a parent who is non-judgmental, more accepting, and developed levels of patience I never knew existed. I’m more considerate towards others, and always looking to help if I can.
Autism has also made me a much stronger person. Like with most disabilities, the fight for services and support is never ending. When it’s your child you become that parent who will do whatever it takes to ensure your children have access to the right support, to enable them to live their best possible lives.
Autism has meant that life is so so different than how I could ever have imagined. But autism has also taught me to become a different parent, a better parent. The parent my children need.