'When Marcus came into the world, my husband and I found it difficult to embrace his Down Syndrome diagnosis. This was heightened by the lack of understanding and support from our traditional European parents,’ Penny explains.

In those early days, Down Syndrome Victoria was an invaluable source of information As Marcus grew older, he also received an Autism diagnosis. He attended specialised centres focused on speech, occupational therapy, and basic learning skills. When Marcus suddenly became non-verbal, the family sought support through special schools, and disability day service providers. The introduction of NDIS funding was transformative, but despite the positive changes that funding brought, problems with transitioning to supports persisted.

As Marcus's behaviour became more complex, Penny made the tough decision to leave paid employment as a school Integration Aid. This need became even more significant when the COVID-19 pandemic struck, when it was close to impossible to get Marcus to his centre-based services. Penny found solace in a support worker, who she describes as a ‘hero and angel,’ and who played a pivotal role in Marcus's development, assisting him to achieve his NDIS goals.

Describing Marcus as a ‘happy, funny, loving man,’ Penny shares his love of dancing, music, and attachment to holding a pom-pom. Mondays hold a special ritual for the two of them, featuring a movie, lunch, and a shopping trip to add to Marcus's ever-growing collection of t-shirts.

‘A typical day for me involves waking up to Marcus between 7 and 8am, assisting with toileting and preparing all his meals. Marcus requires constant attention, including feeding and assistance with medication. Our nights involve shared TV time, with me holding Marcus's hand until we fall asleep from around 1am to 4am.’

Penny is aware of the toll her caring role can take on her own health. To maintain her own wellbeing, she actively engages in carer groups, participating in activities like arts and crafts, and day outings.

Being a member of Carers Victoria has provided Penny with understanding and support during the most trying times.

‘I recall a specific instance when I had to go to the hospital during my children’s younger years. In that critical moment, someone from Carers Victoria assisted me to find care for my children, allowing my husband to accompany me to the hospital.’

Penny’s desire to help fellow carers stems from firsthand experiences, navigating the judgement and misunderstanding of others. Penny urges carers to be kind to themselves, emphasising the importance of gratitude and positivity in maintaining her own selfcare.