The life that never was: grieving the fatherhood I thought I’d have

Raising a child with autism and learning to let go of the life I imagined 

Written by Grandview Kids parent, Paul Sahota

There’s something I’ve been thinking about a lot lately, even if I didn’t quite have the words for it. 

I’m part of a private Facebook group for dads who are raising autistic children. A few weeks ago, another father shared something that hit me right smack in the gut. He wrote: “Does anyone else feel like they’re grieving a child that’s still alive?” 

This is something I’ve felt countless times, but I never had the words for it. I never thought to describe it as grief, but that’s exactly what it feels like. 

The life I thought we’d have 

Before my son was born, there was so much excitement about this new chapter in my life. This is something my wife and I had wanted for so long. There was anticipation for everything that was coming, all the milestones like walking and talking. You see those moments everywhere, and you can’t wait to experience them for yourself. 

I remember daydreaming about what fatherhood would be like. 

I remember thinking about playing sports with my son, going to the local park and kicking a soccer ball around on freshly cut grass in the summer, or going to Canadian Tire to buy him his first baseball glove and finding one that would fit his hand. Then, going to the back of my condo or the front lawn of my parents’ home, and playing catch with a green tennis ball to start building his hand-eye coordination. 

I remember daydreaming about teaching my son dance moves and us choreographing a routine to show off at family functions like weddings or anywhere there was a dance floor. 

I remember thinking about having father-son days where we would go see a movie, go out for a bite to eat and then come home to hear my son tell my wife all about the fun we had. 

I remember thinking about going out to restaurants for family dinners and having my parents join us from time to time. I imagined the end of the meal, wrestling with my dad over who would pay the bill. 

I remember thinking about larger family dinners, with my siblings, my niece and nephew and my grandmother. Having all of us together and seeing different generations of our family sitting around the same table. 

I remember driving past the park in my neighbourhood and seeing all the kids out there playing sports, and doing the math in my head to figure out when my son would join them. I remember thinking I would enroll my son in the soccer program once he turned three and sit on the sidelines, watching him while socializing with the other parents. 

When reality set in 

The magical day finally arrives, and your child is born. All those things you dreamt about and anticipated suddenly feel so much more real. 

But as time goes on, your child starts to miss different developmental milestones. You begin to feel that something isn’t quite right. After going through multiple appointments with different doctors, you eventually receive the official diagnosis of autism. 

After being emotionally winded and trying to process everything, you start to realize that many of the things you once imagined are not going to happen, or at the very least, they are not going to happen on the same timeline as other children. 

That’s when the reality of the situation truly sets in. All those happy dreams I once held onto begin to hit me differently. What once brought me excitement now becomes a painful reminder of the life I don’t have, the life that was taken away from me. 

What our life looks like now 

Instead of going to the local park and kicking a soccer ball around, I focused on helping him master basic motor skills. Going up and down steps, holding his legs and guiding them so he knew which foot to put forward. 

Instead of going to Canadian Tire to buy him his first baseball glove, I was buying padding to put on the corners of our walls because he struggled with balance and kept hurting himself every day moving through our home. 

Instead of playing catch with a tennis ball to build his hand-eye coordination, we played catch with a balloon, because that’s all he could handle for a long time. 

We tried taking him to restaurants. We also tried taking him to an autism-friendly event at the cinema. Both were incredibly high stress, and we weren’t able to manage his behaviour in those settings, so we decided to stop trying for the time being. 

Family dinners look different now. We go to my parents’ home, and my wife and I take shifts. She feeds him first while I eat quickly, then I take him away from the table so she can have her meal. Most of the time, we’re not even able to sit and eat together with the rest of the family. 

There are times when I come across pictures of my siblings and my family sitting down for dinner at a restaurant together, and I stay quiet and keep my emotions hidden, knowing we can’t be part of those moments because it would be too stressful. 

Instead of enrolling him in a typical soccer program and sitting on the sidelines with other parents, I enroll him in an all-abilities program where I need to be with him one-on-one. Often, he doesn’t participate with the other kids, and we end up doing our own thing off to the side. 

Learning to grieve what never was 

I’ve come to realize that holding on to those dreams doesn’t serve me as a father or my family. What I need to do is grieve the life that never was. The experiences we cannot have. The family life that I once envisioned. I need to grieve for my son, for myself as a father, and for my family as a whole. 

But just like any kind of grief, it’s not something you process once and move on from. It shows up again and again. There are moments that trigger memories of things that never actually happened, but that I once imagined so clearly. I can’t allow myself to dwell on those moments, but I also can’t ignore them. I need to find a way to grieve them, so I can come back and be present for what I actually have. 

Because even though this life is very different and filled with constant challenges, there is still so much beauty in it. There is still so much joy that my son brings into our lives. And in many ways, this journey has changed me in ways I never expected. I’m more compassionate. I’m more patient and understanding. I’m more loving. I’ve learned to appreciate the small things in life and the small wins. Because with autism, those small wins often mean everything. 

Letting go and moving forward 

Even now, those moments still come up. They don’t just disappear. Just like any kind of loss, they show up when you least expect them. 

When they do, I try to treat them the same way I approach meditation. When my mind starts to wander, I have to catch those thoughts, acknowledge them and release them from my mind. If I don’t, the grief can take over, and I’m no longer present for my son or my family in the way they need me to be. And when that happens, it can pull me into a downward spiral of negative thoughts, and ultimately into habits and coping mechanisms that don’t serve me or my health. 

But when I am able to catch those moments and release them, it allows me to stay resilient. It allows me to bounce back and stand firmly in the present moment. It allows me to show up as the father my son needs right now. 

The truth is, those thoughts will probably never fully go away. Just like grieving the loss of a loved one, it may become less intense over time, but it doesn’t disappear. And maybe that’s because grief is a reflection of love. You only feel it because you care so deeply. 

What I try to remind myself of is how far my son has come. Despite all the obstacles and challenges in his way, he continues to grow. I need to appreciate him for where he is now and what it’s taken to get here. 

At the same time, I have to continue grieving the life that never was, while also allowing myself to envision a new life that is possible with him. It may be different than what I imagined, but it can still be a life filled with beauty, meaning and excitement. 

And maybe that’s the work now. Not holding onto the old vision but allowing myself to carve out a new one.