Video transcript - Our carers (introduction)

I'm not going to sugarcoat it. Having disability in our family is challenging. It makes life more difficult and it's all encompassing all the time, and it doesn't ever go away. I was a young mother, when my son, you know, had a difficult birth. There were some indicators that I picked up at birth. She just didn't feel quite typical,

Didn't look quite typical. We just noticed the lining up of the cars, the separating of colours, the only wanting to eat white food. Just things like that. I was just like, there's something not right. It hasn't been easy. The road from her birth to her diagnosis took six years. When my mom got diagnosed with early onset Alzheimer's, I was only in my early 20s.

So there was a lot of unknown and a lot of things to work out. We left the doctor's surgery feeling hopeless and overwhelmed and just so, so lost. It’s the loss of that last bit of hope that maybe I was making things up in my head. Maybe I was a new parent who was a little too worried.

We have babies and we hold them in our arms and all of a sudden we've already written the first ten years of their life. And then to be given diagnosis just changed all of that. Your hopes and desires for your child, they just... They change. Like you think your child's going to go like this. And I'm not trying to be negative, but their journey is just maybe a bit more like this.

I think I faced all the things that other carers face. Burnout, exhaustion, carried a lot of guilt. I think carers generally carry a load of guilt. You're almost robotic, you know, because you're paralysed and.... And I shouldn't get myself upset, but you just roll back your sleeves. As much as I try and hide it,

If I'm upset, they know, they see it and when I'm upset and my vibe is off, then my boys are upset. And that breaks my heart because with their disability, they don't understand. My job is their protector. Over time, I've built up my resilience and my toolkit here and there, and I think that we parent him in a really proactive, positive way,

But it's not easy. Parenting a child with a disability has helped us find strength in ourselves that we never even knew existed. It's taught us this whole other level of compassion. It's taught us to see the world so differently. Once you get your head around the disability and that it's not so negative, and that it is just who they are, then you kind of pop out the other side of that grief and you just thrive and you can support your child.

The diagnosis itself does not determine what your child might be capable of. So think big. Shoot for the stars for your child and expect that your providers do so too. So you want to be working with people who see hope for your child, with people who, you know, want to push for that child to have the best outcomes possible.

When I found the right health professionals, I used to call them my pearls because they heard me, they understood me, they were walking with me. Our beautiful girl every day is writing her own beautiful story. And we are so honoured to be a part of that. But a huge part of that story is health care professionals.

And from day dot, they've been with us every step of the way.