Arahni’s son was diagnosed with Autism at age 10. Here she shares her story of navigating parenthood with a child that has a disability. Mable has helped connect her son with a range of independent support workers that suits his lifestyle.
I am often asked to describe what it is like to have a child with autism. It is a unique experience to try and comprehend, for other parents you may find this useful…
Twenty six years ago, an autism diagnosis was less common than today, 1 in 150 in the year 2000, to 1 in 68 today. (Scientific American). People were less aware of the diagnosis and what it meant.
When my son Shai was around two, I noticed that something was not quite right. His development was slower than other children. We started taking him to a specialist to see if we could get an explanation.
At four he was diagnosed with Global Development delay, a disorder that explains his slow development, then at 10, he was diagnosed with Autism. When I received this news, it felt like my world was closing in.
Doctors told me he would never walk properly (he dragged his leg) or talk, and this was truly devastating. To the parents whose children have just been diagnosed, I understand the pain and shame you may be feeling. However, you are stronger than you think. Things will get better. Never stop advocating for your child and their development. If I could go back in time, I would tell myself never to give up! Your child is beautiful, talented, and will teach you new ways to view the world.
Twenty years later, my son is walking and talking. In fact, he can’t stop talking – he has his own radio slot on East Side Radio. He is living independently, moving out at 22 into a supported living house. My son has played baseball for eight years, basketball for four, he is an artist, having participated in 22 art exhibitions, his life is full.
Having a child with autism can take some time to accept. My advice to other parents would be to try not to be a victim, it can be hard, and acceptance takes time. You will discover you are more resilient than you can ever imagine. Ask for help, at the beginning I was too proud to ask for help. Self-care is essential, it can be easy to forget your own needs when you are looking after someone else.
It’s a long journey. There are going to be moments when you have energy, and there will be moments when you don’t. You can’t be a perfect parent the whole time. Take a breath; tomorrow is a new day.
Using platforms and marketplaces like Mable can help your child live a more independent and fulfilling life. My son has over eight independent support workers which we’ve connected with via Mable, that support him to live independently every week, while using his NDIS funding which we self-manage.
We have an independent support worker that helps my son with his radio presenting, and another who is an artist and teaches him about art. When we used workers through a traditional agency, we had different people coming to our house every day, which was distressing and confusing for Shai. They didn’t have that personal connection, because we didn’t choose who they were. To have workers that have varied interests and skills that my son can learn from is invaluable. He has built stable relationships with the independent workers we’ve connected with via Mable..
To fellow parents, you will have a different life than the one you were imagining. However, you will still have a life filled with immense love and joy.
If you’re interested in learning about how you could use Mable to support someone living with Autism, learn more about our finding a trained autism support worker here.
[x_author title=”About the Author”]
Arahni has lived experience as a carer for her son Shai, and been an advocate/adviser in the Australian disability and mental health environment for over 10 years. She was on the NDIS Mental Health Sector Reference Group and also advised the first digital disrupter start-up. She has been a non-executive Director on 8 NFP boards and associations including 3 in the disability sector. Her professional career has spanned 5 countries in senior marketing and advisory roles: in finance, with the World Bank/UN, Government, University and NFP sectors.