Last month we caught up with Francesca Tukadra. Francesca is a single parent and carer for her eight-year-old daughter Ariarna, who has Autism Spectrum Disorder (ASD). Francesca recently moved from Sydney to Griffith in the NSW Riverina region.
Prior to having Ariarna, Francesca struggled to find her niche, training and then working in beauty and aged care before developing an interest in event management.
“I like to do different things, not just stick to one thing. If I want something I can achieve it. My saying it that there is a can, not a can’t. If you put your mind to something, then you can really achieve what you want.”
Falling pregnant with Ariarna was an unexpected blessing, but it wasn’t an easy time.
“When I was pregnant with Ariarna, I didn’t really have a stable environment, a home to live in. I was kind of couch surfing, and I was scared. My sister has an intellectual disability – I worried I would have a child with a disability…I knew how hard it could be.”
The Caring Journey
Initially Ariarna met all her milestones. Then, when she was about seventeen months old things began to change.
“I started to see the flapping hands, the tiptoeing… and she began falling a bit behind other toddlers her age…”
Ariarna began having meltdowns, and high temperatures, eventually resulting in a seizure. At this point Francesca feared Ariarna might have Epilepsy, which she suffers from herself. Francesca recalls that following the seizure, Ariarna began to display classic ASD characteristics.
“I wanted to know what was happening and I did everything. I did the genetic testing. I carry the Fragile X gene and it turned out Ariarna has Fragile X Syndrome.”
Fragile X Syndrome is a genetic disorder that is often associated with Autism, and when Ariarna was finally diagnosed with Autism at the age of three, it came as no surprise to Francesca – but this did not make it any easier.
“It’s not easy raising a child on the spectrum. It’s been hard. It’s been hard for me mentally, physically – just very draining.
Francesca has also had to battle her own demons during this time.
“I suffered from post-natal depression, I have anxiety, PTSD [Post Traumatic Stress Disorder]. I try to be a good mother for my daughter but sometimes I don’t know how to connect with her. I love her, but I don’t always know how to show her that love.”
Carer Gateway
Francesca first heard about Carer Gateway through a service provider. She called the 1800 number and was referred to a Carer Support Planner who worked closely with her to explore how Carer Gateway might be able to help.
“I’ve talked to other organisations, and they just don’t offer the same support that Carer Gateway does. You wouldn’t think to find something like Carer Gateway here – maybe in a capital city, but not in a regional area.”
“Carer Gateway helped me to purchase a laptop computer so I could complete my studies and attend Ariarna’s Telehealth appointments. It has been so helpful!”
Carer Gateway also supported Francesca to access counselling.
“It was good to know that there are organisations like Carer Gateway that really help carers like me.”
Taking Back Control
“I didn’t have a great childhood. I said to myself ‘I’m not going to have my daughter grow up like I grew up.’ I worked on my mental health. I changed my whole lifestyle so that she would be able to thrive, to have a normal life, and not feel any stigma due to her Autism. I don’t want her to struggle like I did.”
Francesca recently completed a Teacher’s Aide qualification.
“Ariarna is my main focus and has always been my main focus, but at the same time … I don’t want to get to a point in the future where I sit back and wonder where my life has gone. Because at the end of the day you can achieve things. I still have my goals.”
The Best Thing
“Sharing what I’ve learnt with other carers in similar situations. Being Ariarna’s mum and carer, and meeting people and connecting with other parents, carers, and kids.”
The Hardest Thing
“The meltdowns – that’s the hardest thing.”
What Keeps you Going
“Being able to ensure, every day, that Ariarna has every opportunity I can give her.”
Hopes and Dreams
“To not struggle. To find someone who accepts me and my daughter. To have a comfortable home and to lead a good life.”
Where to next
“Ariarna has sent me down a different path. I was never going to have children and then she came along. I want parents to know that there are better things out there, and I want to be an advocate for kids on the spectrum – and their parents.”
Top Tip
“Don’t give up. No matter what. You’ll have your struggles – but don’t give up!”
If you’re one of Australia’s 2.7 million unpaid carers, you can access practical advice and support by contacting Carer Gateway on 1800 422 737.
Glossary
- Autism Spectrum Disorder (ASD) is a lifelong developmental condition characterised by difficulties in social interaction, communication, restricted and repetitive interests and behaviours, and sensory sensitivities.
- Fragile X Syndrome is a genetic condition that causes a range of developmental problems including learning disabilities and cognitive impairment.
