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Are we OK? Probably not!

By Kelly Wilton

The recent R UK OK day got me thinking about how many of us really aren’t ok.

As parent-carers we have a role that is very different to that of typical parents. And this is not a comparison chart or a shout out of ‘who does it harder’. As I have said many times before, it’s different. And to accept that it’s different, is to not only see but hear the person that is speaking to you.

In many parts of the country, communities have been locked down for months and months. Within those communities there are all sorts of people; different backgrounds, different interests, different lives; all just trying to keep their heads above water. And that includes our community – parents of children with complex conditions, disabilities and life-long health conditions.

Many in our community lived isolated lives before the pandemic hit, we’re isolated during the pandemic and if we are not careful our isolation will continue long after the pandemic. 

Which is just not good enough.

The statistics for the main carer of a child with disability, and proportionally it’s mums, is sobering. The numbers speak for themselves, we are at a higher risk of an earlier death because of the stress we carry. Of course within each family, there will be a different dynamic, so it could be the solo dad, the solo mum, the grandparent, the person who is the advocate for their child until, and we all hope, our child can advocate for themselves, long after we are gone.

It’s about time that when we speak, people listen and don’t shame us into thinking that we must be poor parents because we need help.

I manage and live on a daily basis with depression, anxiety and chronic PTSD. It’s a cycle of trauma that many of us deal with and we manage it (or try to) the best we know how. Some manage with exercise, or over the counter medication, or self-medication, or diet and lifestyle, belief systems. Or a combination of any number of those ways.

Some days, I forget all about it because I do the things that I need to do to help me function well. Sleep, eat well, exercise, I have a network of people who I can call upon.  It’s taken a long time to build this for myself and it helps.

The mental load that we carry as a carer-parent is a load like no other. In fact, it was only recently at a NDIS review that my support person told it to me straight.

You cannot continue to fight in the state you are now. You cannot keep going at 100% adrenalin – you need support, you need to stop explaining yourself to everyone and feeling like you have to justify every little thing.

But in a world that sees us ticking boxes and filling out forms pretty much every other week, answering questions – it feels like that’s all we do?! We justify why we need help in our families, so that we can support the people who need it.

What I want is for the person reading this to stop for a moment and thank themselves.

Thank YOU for being –

  1. Your child’s number 1 advocate – you know your child better than anyone else and you are doing a great job. You work tirelessly behind the scenes so that your child may have opportunities that others take for granted.  
  2. Honest. Despite having to put on a happy face at times, you are honest. You speak the truth when it’s needed, even when it burns you. We see you when you’re tired of the merry go round of questions. Know that we see your pain. Your fellow parent-carers who are also trying to keep our heads above water, see you and support you the best way we can. 
  3. True. We know that you live your truth. That you fight everyday battles that many others just do not see or can truly appreciate. We see your truth – that you are doing your best. Please know this is enough.

It’s time to seek out what you need to help you live your life better – things that will help you put yourself first, so that you can help your children, your family.

  • Find people who get it – talk to them, drop them a message, ask for a meeting, ask for help. Ask others how they do it, who they seek out.
  • We organise support workers for our kids, why not try to organise someone for you. Someone who can help you with your NDIS stuff, an advocate, a social worker, a professional you can trust. Someone who can look at your family holistically and not just the clinical view of ‘participant’. 

We really need to support each other and lift each other up. We love our kids and we want to be around for them for as long as possible, so lets get started!

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