Every day with Autism is a new day

Belinda, Sean and their son Blade moved to South East Queensland almost four years ago now from Melbourne. They came without family support but were uniquely equipped with vital insights into autism based on Belinda’s work in a special school.

Like most kids his age, nine-year-old Blade loves his iPad, watching YouTube, gaming and virtual reality. He also does Martial Arts and plays with his friends. Belinda misses her lifelong dancing and social groups in Melbourne, and Sean would like to spend more time fishing and camping, but it can be challenging to fit these into life with Blade.

By age four, Belinda noticed that their son Blade was not quite reaching the “usual” milestones. Having been equipped with some knowledge of her own, she thought to make sure his experience was documented, including by his Paediatrician. She’d heard from families that a diagnosis for autism could take time, so as she saw more traits emerge that aligned with being on the spectrum, she kept documenting them.

In kindergarten, the family was fortunate enough to have an outstanding, passionate teacher working with Blade, who helped them to apply for support. Belinda shares with admiration and a smile at how their family still keeps in touch with this teacher because she made such a vital difference to Blade’s wellbeing.

“We realised Blade just didn’t have the social skills and the ability to emotionally regulate at times,” says Belinda. “Then we also noticed things like flapping (stimming) and a few other cues, so we decided to go through the assessment process and quickly gained the support of ECIS (Early Childhood Intervention Services). I’m always so grateful that we had help from such a young age for Blade, as it’s really made the world of difference,” Belinda says.

“My own experience working in disability also enabled me to approach our son’s journey as a strong advocate for him. I was lucky that I had readily available advice and information and actively sought help. My husband faced a few more struggles in getting his head around it, but we dealt with our concerns together.”

“Our boy is the best gift that we could have ever asked for and we wouldn’t have him any other way, we love his quirks and mind. He has taught us to look at things in another light,” she says.

Belinda’s experience has also shown her, however, that society has a way to go in understanding and accepting people with autism. The family has made local connections and reached out for help from friends and services, but it isn’t always easy.

“Some of the biggest challenges are learning to deal with situations, as they can change all the time, and as much as you feel prepared, you can’t predict what will happen. Meltdowns are inevitable. We left our family and their help behind and now it’s just us. Trusting someone with your special needs child is really hard and until you can, there is no break or down time, or “you time” that doctors and specialists say you need,” Belinda explains.

“I see other kids at his age being dropped off at parties or friends’ houses for sleepovers, but when in the back of your head you feel anxiety about all of the “what ifs” then you have to be with them 100% of the time. This affects your social, work and home life, it’s a struggle but you just have to make it work.”

“I feel my anxiety will always be there – about managing our lifestyle, seeing Blade’s struggles and not being able to do much about them, along with thinking about his future. You can’t say how the future will turn out, all you can do is be there and support the best that you can.”

“As for his gifts, every success however small, and watching our son grow and develop into this beautiful, kind-hearted kid with a smile on his face, or seeing his passion when he talks about things he likes – this keeps us going as parents to ensure he has the best life he can have.”

Blade has the support of NDIS funding and can access a range of allied health specialists, including a dietitian, occupational therapist for social skills, emotion regulation and independent living skills, and a physiotherapist to assist with gross motor skills. Waitlists for some supports are a hurdle and the wait to see a particular psychologist has gone on almost two years.

If Belinda could share advice with other parents, it would be to find supports, formal and informal, and to share the journey.

“You need someone you can speak to freely about your child, knowing that you won’t be judged. Try to seek support in likeminded families, and there are many Facebook pages with people who understand and are willing to help.”

“Lastly, embrace every moment you can - there are lows of course, but focus on the highs. Sometimes that can be as simple as that they kept their socks and shoes on today! Hold onto everything,” Belinda counsels.

She also wishes for one important thing - that the wider community could let children and young adults with autism be themselves.

“There is so much pressure on kids’ shoulders to fit in and do what is socially acceptable, but their learning and development could be easier with more understanding from society. Community integration is important, but so is being open to understanding and learning new ways rather than presuming there’s only one “right” way.

“For example, kids may find connection hard so they look away when speaking to someone, or they may need to move or fidget in the classroom. I know that having a bloom (wobble stool) and a soft toy in his hand in class helped my son concentrate better. There are more ways to make progress than just enforcing the “norm” for all.”

Belinda believes the spectrum is so large that there is no one category to put someone in and what works one day may not work the next. Every day can bring new learnings.

“When you have someone in your life that thinks a bit differently, you become more open to new things and ways. We had to learn that our communication is not always taken as we mean it. Blade is very literal, so you have to think about what you say before you say it! Our son has taught me more through lived experience than I could ever read in a book.”

Not long after moving to Queensland from Melbourne, Belinda applied for a job at Compass. She reflects on how having a child with autism has enriched her work, and how working for Compass has also, in turn, enriched her life and that of her family.

“My experience before coming to Compass gave me a good understanding of the supports needed and knowledge of ASD that was useful to my work and has helped me to connect with the trainees and their families. I know from personal experience how daunting it can be, so I have empathy for their needs. It’s also been rewarding to be able to implement ideas that support my son into my work supporting others. I have been able to use resources that I created and used at home into my work life,” Belinda explains.

“Working at Compass has also opened my eyes about my own “what if” questions for Blade, as he is only nine and we don’t know what’s to come and what he can achieve, so I take comfort in seeing the achievements of our trainees,” she says.

“Watching them grow and develop is really incredible and gives me hope.”

Belinda particularly praises Compass’ support for people living with a disability beyond their school years, for creating a place to go that continues to support their journeys into adulthood and also providing several social enterprise opportunities that encourage them to grow, learn more and follow passions.

“Every day I see that these opportunities give trainees a sense of pride in what they can do and achieve. The variety of support within Compass for trainees and families helps them discover what works for them, participate in activities they enjoy and develop practical life skills. The Compass team also supports families with documentation for NDIS plans and reaching NDIS goals.

“I’m excited about the Compass “Shining a Light for Autism” campaign this April and that I can be a part of something to directly support people with autism and also raise community awareness around ASD – sharing this information will help make life a little bit easier in our complicated world, for many people.”