I’ve got quite a personal post, today. A post about anxiety, heartache, discovery and in the end, immense satisfaction.
Today is International Day of Disabled People.
I have two children with disabilities – although as a great friend pointed out to me the other day: ‘I don’t think of your kids as disabled.’ Nothing more can make a parent happier.
On the outside, you wouldn’t realise either of the kids have grown up with extra challenges. You wouldn’t know that either of them didn’t speak until after they went to school, or that I taught them both and used sign language for the first five or six years of their life. You wouldn’t know that my son wasn’t toilet trained until Year One, or that my daughter didn’t speak until she was four.
If you’d asked me eighteen years ago, how I was coping, I would have stared at you through bleary, tear stained eyes and told you I wasn’t. I thought I was a hopeless mum. Every time Hayden screamed and I couldn’t settle him down or understand even WHY he was crying, a tiny bit of me eroded. What was I doing wrong to make my son cry like he was? Why couldn’t my daughter speak, walk, hold a ball? What had I done wrong?
If you add into the mix I was living in a little demountable atco hut, without power and toilet, and 100km from the nearest town, it wasn’t any wonder I felt incredibly isolated.
Even as I type this, I can feel all the emotions of not being good enough, doubt, anxiety, and fear coming through – it’s easy to cry again, when you feel all of this.
If another question you asked was: ‘Can you see a light at the end of a tunnel, I would have laughed at you.
The early days were filled with fog, sleepless nights, projectile vomiting, therapy and trips to unfamiliar places to seek therapy for the kids. Add into this trying to run a farm and a ex-husband who had trouble in accepting that there was something wrong with his children, well, all of this pushed me outside of my comfort zone.
But this isn’t a post about the hard times. The above examples are there for context.
A few years ago, my son attended his highschool ball. He wanted me to take him in the hi-lux ute, with my kelpie on the back… He dressed to impress in a gorgeous suit, complete with Akubra hat. Our highschool does the ‘red carpet walk’ and most of the kids take old restored (very cool) cars. Obviously the hi-lux isn’t one of those, so when I pulled into the line to drop Hayden off, I was in behind a Lamborghini… Hayden didn’t care. He got out, the crowd watching gave a cheer and he raised his hand in salute to them all before walking up the red carpet enjoying his moment.
At that point I burst into tears knowing that every fight I’d fought, every therapy session I’d attended and tear I’d shed was so totally worth it. That was in 2017.
Fast forward to 2020; Hayden has worked hard since he left school to find a job – he spent a year pushing trollies at Woolies, because every time a potential employer heard the word ‘Autism’ they baulked a little. I understand that. For someone who hasn’t been around kids like this, it can be a little daunting.
Then an understanding, caring employer came along Hayden now works four days a week at a Machinery Dealership, detailing tractors. His confidence has soared and he has purpose. He also has his restricted pilots licence. Yes, his restricted pilots licence! I know, right?!
2019 saw Rochelle head off overseas by herself. She worked in pubs in England, travelled to Europe and only came home when COVID hit. She wasn’t ready; her adventures were still happening! Her speech is beautiful and you would only know there is something amiss when she gets tired. When that happens, Rochelle can bang into the doors, get her words mixed up and a few other things, but nothing that stops her from living a very full life.
All of their successes are down to them. They had the support they needed growing up, but they have never let their challenges stop them from achieving what they’ve wanted to. I’ve always said to them: ‘Do not let people write the rules for you. If you want to do something, go out and do it.’ And they have. I’m incredibly proud of these two.
People have asked if I will write about this at some stage. Even today was hard to write this; the emotions are still very raw. All I know is that given the chance and the right support, people with disabilities can achieve things – great things.
And the parents? Again, with the right support of family and friends, therapists and doctors, they can help their kids achieve this.
So if you are feeling like I was eighteen years ago, please don’t ever give up. There is light at the end of the tunnel.