How I Dealt With An Autism Diagnosis
Welcome to the first happy hubble blog post (and my first ever blog)!
I’ve had the idea for the happy hubble endeavour for a few years, and have finally reached a stage in life where I can bring it to reality.
As a mother of three children with autism, I’m always thinking of ways around the challenges we face daily. I’ve had a lot of failures, but also a lot of successes. There’s always a solution, if we think "outside the box" and get back to basics.
I learned a lot from the great minds I’ve been lucky enough to call my children’s therapists. They have so much knowledge. I’ve tried to take on board and practise everything they’ve taught me – at least, as much as I can when confronted by three screaming kids!
Every effort I’ve put in has been rewarded.
Staying up all night to make visuals, taking the time to prepare the kids. It’s all made a huge difference.
I found that the more I did, the more solutions and ideas I had (the tricky part is finding the time to implement them). The kids are helping too. Not only have I learnt a lot by caring for them and loving them, our eldest has come up with some amazing ideas herself.
I'd love to share these ideas and solutions with you. That’s what happy hubble is all about.
There’s just so much to share, my head is so full of information, that it’s going to be hard to get the words down in the right order!
Let’s start at the beginning
The idea for happy hubble was born when I was talking to our occupational therapist.
We were discussing the things I was doing for our children, and the ideas I had for other strategies to help them (always talk to your therapists! This is important).
The OT said that I needed to get my ideas out there. “Simone,” she said, “You need to write a book.”
I told her that surely other parents are already doing similar things.
What I’m doing isn’t that spectacular. The ideas I’d come up with and the advice I was following was something that all parents of autistic kids were doing. Right?
Then I remembered. In the very beginning, it wasn’t easy. Back when it all started, I knew nothing. I had no idea what to do. Now I'm brimming with ideas
Tips and tricks for living with autism.
Now I want to help other parents learn the things I’ve learnt. I want to help improve the lives of those with similar challenges.
Dealing with the autism diagnosis
The hardest stage for me was the months following diagnosis.
The day my first child was diagnosed with autism spectrum disorder (ASD), I was lost. I'd known something wasn't normal, that she wasn't quite the same as other kids. But the diagnosis was still a shock. I asked the receptionist at the pediatricians office, “What do I do now?”
She broke it down for me, but when I left the office I was still dazed and confused. I wasn’t processing the information.
All I could focus on was keeping my emotions contained, trying not to get upset about our child’s diagnosis. Somehow, by putting one foot in front of the other, I kept going.
Our beautiful child was struggling and looking to us for support. I had no idea what to do. Which form do I take to Centrelink? (Oh, Centrelink. I have lost so much of my life to Centrelink – that’s a whole other nightmare.)
- Do I need a letter from the doctor?
- What is an OT?
- What does sensory processing disorder even mean?
- How do I bathe my child?
- Why is she screaming?
I felt alone, unprepared, and piled high with brochures
I didn’t have time to read. I couldn’t shower, I barely got any sleep.
I had all questions and no answers.
And then it happened again and again.
Three children diagnosed with autism. It doesn’t get easier with repetition.
If I had the time, I would have discovered that I could apply for respite care. I could have attended a support group, been surrounded by others going through the same difficulties.
Sensory products and information
I looked online and was bombarded by sensory products and information.
But which ones could help? If only there was a practical "start-up pack" available, complete with simple step by step instructions, sensory tools, a timer, routines and other great visuals. Those first few months would have been easier.
It actually took me two years to become aware of support groups.
Two years of struggling to stay afloat, of watching neurotypical children happily hug their parents and wondering why isn’t that me? What did I do wrong?
Two years of feeling alone. Just finding the time to look for help was hard. Those who need help the most, can’t get to the phone.
I’ve been there. I want to help make this an easier experience for others.
Taking control of life
No one contacts you to highlight the supports you can receive. You need to find them yourself.
The turning point for me was a year ago. I (finally!) read a pamphlet and discovered the Independent Living Centre. They offer a variety of services including emergency respite, funding towards camps and school holiday programs, and so on.
I registered online and shortly afterwards received an invitation to a weekend for carers. This was two nights at Moore River, with yoga, meditation, talks from motivational speakers, canoeing and all meals provided. It was all fully funded – they even provided some in-home support to look after the kids.
This weekend was the enormous change my life needed.
I had felt lost, empty and sad. Now I was nervous and excited. It would be the first time in years that I could let my guard down, let myself feel, just feel … and breathe.
Walking into this house with 15 other carers, all with their own stories, all looking tired, I felt at home. I felt understood. We made close friendships that weekend. We didn’t need to explain autism to each other, we didn’t have our children with us, we could just be us. Words cannot describe that weekend, but it was the beginning of me.
I feel like I’m living now, not just surviving. I’m not alone.
I can help my children. I can love them and support them. I can love and support myself.
I’m still learning what I need to do to help our kids. All three children are diagnosed with autism, and all three are completely different to each other. I’m learning all the time how to tackle the challenges that every day brings.
I hope to be able to help some people along the way.