Disability and the unknown: when you ask me questions about my son I just can’t answer

By Kelly Wilton

When we face problems or situations we don’t like, we can usually find a way to work through them, sometimes even solve them, through choices we make to move on to the next chapter of our lives. 

Many people don’t realise or appreciate that parenting a child with a disability often goes hand in hand with juggling complicated health conditions. We often don’t get much choice in being able to change our child’s situation in this regard – conditions can be managed but not cured. For the best part, at a point in time, something shifts and instead of wanting a situation to change, we accept it and become super focused on supporting our child to make their reality the best it can be. We celebrate our kids just the way they are. That’s not to say that we wouldn’t like to make life easier for them, and to help ease the load that they face.

The medical professionals and the team around us are there to help but they don’t always have the answers. We are a ‘rare conditions’ family – like many of you reading this. We don’t get the chance to just say we want to change our child’s situation; answers may unfold over time, but sometimes they don’t.

Just when we think we may have figured something out, we get thrown a curve ball, or another set of questions arise which need answering. Sometimes we don’t know any of the answers, and neither do the doctors.

Currently, we are navigating and battling with some extreme behaviour issues which are impacting on our son’s learning, growth and development. This is all because he needed a second brain surgery and there has been a knock-on effect because of the further ABI that has impacted him. There is no easy answer other than to take things day-by-day and experiment with different medical and therapy options.

It can be difficult at times for us to understand why something has become more challenging, and it sure does upset us to see our son distressed; so you can only imagine what it’s like when we go out into the community – the impact and emotional toll it takes on us. Because of his behaviours, every thought has been given into where we are going, how long we will stay there and what’s our window of opportunity looking like for today!

When we’re out and about in our community it’s very trying when we get asked the same questions over and over again, to be made to justify and explain the way things are when we simply don’t have the answers.

If you have family or friends who have a child with a disability and you really want to support them, just think through what you are about to ask them. Do you think that asking a barrage of questions, that they’ve probably already discussed with the doctors at great length, is really going to help or support their current situation? 

Instead, how about asking about everyday things – ‘how is he/she liking school/kindy?’ etc. Start the conversation like you would with anyone else, and then see how it progresses. We don’t want to feel that you only see our child as having ‘problems, medical issues etc’ – talk to us about our child like you would anyone else. Our children are loved and not a problem; only their condition is complicated, our kids are not.

If you really don’t know what to say, please just say “I am sorry this is so sh*t at the moment”. Acknowledge it.

If we reveal to you, it’s hard, trust us, it’s hard!  Don’t ask us a myriad of questions so we can justify why it’s hard to you. Believe me, we don’t have the energy!  Just accept our answer, please.

The truth is, you don’t see what goes on in our home in any give 24 hour cycle any more than what we see in yours. 

And that’s where we are all the same.