As a disabled parent, it’s a good idea to harness the small things that can make all the difference. As a disabled parent of two children, I completely empathise with disabled individuals who are questioning whether they are physically or mentally capable of raising children. I suppose this might be something that all prospective parents wonder to some degree, regardless of disability. But for those of us who are disabled, we have extra obstacles to navigate.

By Danielle Finch

I’m not going to pretend that some days aren’t tough, but I hope I can provide some encouragement to those of you who are exploring, as well as those who have already been thrown into the deep end of parenting. Our families may not operate as others do, but it is certainly possible to thrive as a disabled or ‘interabled’ family. It has, however, been quite a journey for me to develop and truly live by this mindset. 

The early years of parenting my kids (Isaac, 8 and Anna, 6) were marked by uncontrolled pain and fatigue that was exacerbated by the fact that no medical professionals knew what was wrong and many didn’t believe that any of my symptoms actually existed. I had no idea what was going on and felt massive guilt that I couldn’t be the mum I wanted to be, or I suppose, more accurately, that I felt the world thought I should be.

It wasn’t until my daughter was nearly one year old that I was diagnosed with Ehlers-Danlos syndromes. EDS are genetic connective tissue disorders that can cause widespread pain, fatigue and joint instability. 

Although it shouldn’t have taken a diagnosis, I was finally able to give myself permission to start exploring the changes I needed to make that would significantly improve my quality of life, in turn, affecting how I was able to parent.

I am, by no means, an expert, but I’m learning more all the time. I feel though, like I should share the tools that have been most helpful to me in navigating life as a disabled parent.

Change your mindset
For me, the biggest change had to come from within. I had to learn not to play the comparison game, but to lean into and love my family just the way it is. This is increasingly difficult in the age of social media but in my opinion, the best thing you can do for your family is to figure out what works for you. Disabilities affect us all differently and so our weekends look different and our holidays look different. Even something simple like going out for a walk, looks different. And that’s OK. I have learned that what matters most to my kids is that I love them and I’m present. Everything else can work around that. 

Build your support network
I am so fortunate to have an incredible support network. My husband, friends, family and an amazing church community all step up when my body has other ideas. 

I’m not going to presume that you’re all fortunate enough to be in that same situation. But I can’t emphasise enough how much help it has been and how reassuring it is to know that there are people who are willing to be there, when you physically or mentally can’t be. I assume this is true of most parents. But for disabled people, our health can throw unexpected curveballs, meaning we can’t always do everything we would like.

Adaptations
Finding the right aids and adaptations is important, as is not being afraid to use them. Speak with an occupational therapist and work with them to help make specific tasks easier.

The thing that has helped my parenting the most, is my acceptance of needing to use a wheelchair. My wheelchair has changed my life. I no longer hobble behind in agony, I now race my kids! I feel so blessed to have been able to raise enough money 

this year for an all-terrain wheelchair that has enabled me to access places with my kids that I haven’t been to in years. 

I haven’t, by any means, got all the answers but as a family we are learning all the time and having a laugh along the way. Perhaps as a result of my disability, the kids are growing into patient, considerate and compassionate people. It can be hard but there is so much joy and I honestly can’t wait to see what the future holds. Will there be challenges? Of course there will, but we will continue to grow and adapt. After all, isn’t that something us disabled people are already expert at?

About Danielle Finch
Danielle is a wife, mum and former teacher, navigating life, parenting and faith with disability. She is a freelance writer.