The hidden cost of caring
October 17, 2019
Having your child diagnosed with autism is confronting. They think differently to neuro-typical children and you need to learn new ways to support them. Thanks to the tireless work of Cristy and her family, her son Eli has made huge progress and will be attending a mainstream school next year. But juggling work and Eli’s care remains a constant challenge.
When did you discover Eli was autistic?
We figured it out when he was two years old, by age three he was diagnosed. I’d been in denial, but by then his speech was obviously delayed and someone mentioned to me he showed other signs of having Autism Spectrum Disorder (ASD). A quick look at an ASD app made us realise we needed to investigate.
Christmas at Uriarra Crossing
It was a big shock at first – very confronting. We didn’t really know anything about autism and had no idea what to expect. We worried he’d never speak, we worried he’d face extra challenges in life. Everything we expected for him – everything we expected as parents – changed.
Some people look at a label as a bad thing. But we found it to be a relief. We finally understood why certain things were harder for Eli, why our experience of being first-time parents has been so different from that of our friends. Most importantly, we know where to look to figure out how to best support him.
Cristy threw herself into learning about autism. She did endless research, joined online forums and support groups, went on courses and sought out the best therapists. She and her husband also started implementing techniques that they’d learnt through therapy with Eli at home. They trialled AAC (Augmentative and Alternative Communication) which uses visuals to help communicate with people who can’t rely on speech. They discovered Eli was fascinated with traffic lights, road signs and the Wiggles and worked hard to support his interests. He started learning how to talk by engaging with his interests – and singing lots of Wiggles songs! At times it is exhausting visiting yet another traffic light, but it is all worth it at the end of the day.
Traffic lights are one of Eli’s all-time favs, particularly
traffic lights with ‘up’ arrows – which happen to be a rare sight in Canberra!
What progress has Eli made in the last year?
It’s been amazing. On the first day of pre-school at the end of last year, Eli couldn’t even answer when the teacher asked him his name. Since then, he’s had this explosion of language! Today, he’ll come back from pre-school and tell us stories.
He’s also come such a long way with his sensory regulation. Eli gets anxious in new situations and can’t cope with groups – and, when he’s stressed or scared, he runs. Once he ran into fast-moving traffic. We need to take a lot of extra precautions and monitor how he’s doing closely, in order to keep him safe.
We used to have to avoid events like Canberra’s Floriade. But, this year, we’ve been twice! We’ve also been able to travel to Papua New Guinea to visit my husband’s family. That type of thing – with heaps of new experiences – used to take a real toll on all of us. As a family we’ve all adapted and learnt how we can best tackle new and challenging experiences together.
We've found a small K-2 school who understands Eli's needs, so we're hopeful next year he'll have a wonderful, supportive environment.
Eli’s 4th birthday party. The cake toppers feature a few of his favourite things.
How do you cope with caring for Eli and working part-time at Accenture?
At times, caring is a full-time job in itself, so I basically do two jobs. It can be hard to find care for Eli with people who understand and will really take in the information you tell them. Unless you’re dealing with someone who has experience dealing with autism, you must teach people and tell them what works for your child. It is quite a hidden strain on parents when you’re having to educate the educators. We work closely with every new person who comes into Eli’s life to help them understand. I’ve been known to create YouTube videos for day care staff!
I’m currently working 30 hours a week part-time as an application developer. I do get very tired and it’s a push fitting everything in. It’s most stressful during times of transition for Eli, when we might get a call if Eli isn’t coping. At these times, I will not let my phone out of my sight in case school calls and Eli needs me. My husband and I both work jobs with deadlines. So, we negotiate who’ll do the pickup based on who’s got the tightest deadline.
It’s been hard at work knowing that, at any moment, I may have to drop everything and run. I take great pride in my work – but of course, Eli is my top priority. Whenever I’m asked to take on a new role, I have to consider how to manage that. My team is amazingly understanding.
Over time we’ve learnt how to best prepare for transitions, such as starting school, which allows us to be better prepared to make it as smooth as possible. I’ve also learnt to create back-up plans with my manager, trying to think of every eventuality so, whatever happens, the work will still get done. Even something as simple as “should I learn to use this new piece of software” is a big decision.
I’ve started outsourcing things at home. When I needed 200 images of street signs and traffic lights for Eli’s next learning project, I actually put the job out to AirTasker!
How can we support carers at work?