By Kelly Wilton
Do you ever sometimes feel that you’re living two lives?
Just the thought of living two lives is tiring – some days I barely feel I’m doing a good job in this one, how could I live a second one?!
It’s only recently that I’ve really thought about this – that it’s like I exist in two different worlds – and it makes me feel uneasy.
I recently made the decision to return to full time work and it hit me like a tonne of bricks – a whole new level of tiredness. It’s probably the brain strain of learning a new job, being hard on myself that learning a new job is actually quite a challenge and the fact that my memory is not as sharp as it once was.
It’s hard to explain to people who don’t have a child with a disability the impact returning to work has had on our family.
Modern day stresses affect everyone in one way or another, but my reality (one that is no doubt very similar to many others who have a child with a disability) is that we deal with a very different set of stresses. I want to see more recognition of this and more support for families that are trying to change their lives for the better.
We already know that far too many families crack under the pressure of juggling special needs parenting, work and everything else life throws at us. If these families had better supports earlier on would they have had a better outcome?
Our son has half a brain after surgery for a rare seizure disorder. He has visual, physical and intellectual impairments. He is non-verbal, although he does communicate. He has developed with all these impairments since he was a baby, so we have grown with him and he’s shown as a different way of life. But as he grows older it’s very apparent that he’s different.
He’s such a spunky little boy and those who get to know him say the same – his differences are what make him unique. But on first meeting him, if you don’t know his story you may think he’s ‘naughty’, ‘uncontrolled’, ‘demanding’.
There are no adjustments made for him when we go out into our community. We make sure we make the adjustments and have all eventualities covered (don’t be reading this and think that we have it all together – it’s taken us seven years to get to this point!). The lack of formal supports and true inclusion opportunities for families like mine create huge additional pressures on us as a family unit.
So getting back to my new job. It is a strain learning a new routine, new processes and procedures – pretending to be bright-eyed and bushy-tailed (more like dark eyes and coffee loaded!) I’ve struggled more than I imagined I would; it’s an intense environment and although I feel I deal with pressure relatively well, I find that it can impact my energy levels if I am having a low day (17 coffees anyone?!).
So I feel like I live two lives – in one I’m a loving yet frustrated parent of a beautiful boy with a life changing condition and in the other I’m someone at work who pretends that her life is just like everyone else’s.
I am frustrated because people don’t really understand, governments don’t understand. It feels like our lives are a constant battle of proving what we need in order to function ‘normally’ as a family. It is hard to explain this to people who have no experience with disability. It’s a conversation that just tires me out.
So I am learning to navigate this new way of life for our family – the work ‘me’ and my life as a special needs parent. The balancing act is not working right now – work, family , disability life – it’s all or nothing at the moment!
I am sure that in time we will figure it out – we have no choice if we wan’t to keep our family together.
It might just take us another seven years though!