Independence is a fundamental part of growing up. For people like my twin sons, Richard and Matthew, who are in their early 20s and who navigate the world with autism spectrum disorder and intellectual challenges, achieving independence takes on an even deeper significance.
When Richard, one of my twins, saw the sons and daughters of our family and friends begin to drive their own cars, he too asked for a car of his own.
I had to explain to Richard, in simple terms, that driving required certain skills he was still developing. “I’m sorry Richard,” I said, “but you can’t drive a car unless you can read more words, write more words and can follow the road rules all of the time.”
Of course, Richard’s daily challenges have not prevented him from pointing out the mistakes and unsafe behaviour of other drivers on the road. They’re also why both of my sons tell me to go through red traffic lights (which I do not) if they are in a hurry to get home because ‘The Chase’ is about to start.
Instead, Richard found another avenue to explore: “Mum, I want to catch the bus on my own.” Encouraged by positive conversations with their daytime disability service staff, I supported Richard and Matthew as they embarked on “travel training” to navigate the bus system independently. From verbal communication to problem-solving scenarios, they honed the skills necessary for safe solo travel.
Together, they practised the skills needed to catch a public bus, ranging from verbal communication, to identifying the bus numbers and the respective routes they travelled, to using a Myki card, to what to do if you miss your bus, or if you get off at the wrong bus stop, or if there are other angry people on your bus, and last but not least, how to wait patiently (without verbal or behavioural meltdowns) for your bus.
When the day finally arrived, Richard and Matthew caught the local bus from three suburbs away. They had their mobile phones with them and rang me when they were on their way. I tracked every moment of their journey on the family-sharing GPS app on my mobile phone. All went well and a milestone was celebrated.
Since then, my sons have discovered how to ‘disable’ me from following their journeys on my phone. The good news is that Richard has not asked me if he can drive a car for a long time now. I assumed that his quest for independence had been fulfilled.
Then came the next stage of their desire for independence. We were at a house-warming party for my friend’s daughter who had just moved out of her parents’ house and into her own home. “Mum, I want to live in my own house”.
I had been using the services of Carer Solutions ever since the NDIS (National Disability Insurance Scheme) rolled out in 2014 to enable me to directly employ staff of my choosing to assist my sons with activities of daily living and also with community participation. Carer Solutions takes care of the business details of signing up and paying my staff and enabling me to control the rostering of my staff when they are needed.
“Would you like to live together in your own house with Victoria, Michaela, Michelle, Lisa, Deb and Monica taking turns to be with you and to sleep over?” I asked Matthew and Richard. They both became cautiously excited as the time for this transition drew closer.
I began the process of diving headfirst into the private rental market, attending countless house inspections and after having had eleven rental applications rejected (whilst juggling both my employment and carer responsibilities), finally, I was successful.
Matthew and Richard moved into their new house in August 2023. Their new NDIS funding application was submitted on the same day. Eight months later I am still waiting for it to be approved.
Juggling responsibilities between their home and mine, I’ve found myself continuing to balance my employment and caregiving roles. “What’s it like having an empty nest?” people ask me. “I’ll let you know when it happens,” I reply.
I have taken months off work this year to continue to support my sons in their home. I have also asked their daytime disability service to provide me with extra staff to work alongside our Carer Solutions support workers.
Despite the challenges, witnessing Richard and Matthew’s contentment in their newfound freedom validates the journey. How do I measure their new quality of life? They haven’t asked to return to the nest!
About the author:
Simmonne Dyson-Holland lives in Melbourne, Australia, and is an educator at a tertiary institute. Teaching adult students the skills needed to work in the Disability sector is motivated by her desire to build a better community of understanding and support for people with disabilities, especially for her adult sons, who are challenged by life ‘on the spectrum’.
