When Michelle Sexton first embarked on the journey to get her son Liam a bike, she wanted to give him access to something that would empower him to maintain his mobility, while allowing him to have an outlet.
She knew that a customised bike while extremely freeing and crucial for Liam’s quality of life, would only become a reality through thoughtful collaboration with providers, therapists, and the assistance of Liam’s Support Coordinator – Mark Boyce.
“Mark’s been a great advocate for us. If ever I’m having any issue with providers not getting back to us or, giving us the run-around or even if it’s the NDIA, he’s onto it. I call him my bulldog, he’s Boycey the bulldog!” Michelle says.
In 2018, Michelle first stumbled across Solve Disability Solutions’ Freedom Wheels program, an initiative that designs custom bikes for people with disabilities and offers assistive technology. Initially, she was unsure Liam would be eligible, but she knew the benefit to him would be worth it.
Once Liam finishes school, he’s not going to have the same physical programs he does at school, so maintaining his mobility is a big goal for Michelle. Practising self-care and nurturing physical mobility is something that is frequently overlooked within the CP community. However, more people and parents are educating themselves on the vital impact regular exercise has on cerebral palsy and it is always on Michelle’s mind.
The bike Liam uses is a dual recumbent bicycle. The design is crucial to Liam’s needs, creating a side-by-side bicycle means that the passenger can take over if Liam gets tired. More importantly, it ensures that the passenger can also see and communicate with Liam while he’s riding.
“We’ve got great therapists that know how important it is and they’ve been instrumental in helping us get the bike and the hydrotherapy,” explains Michelle. However, even with the assistance of a strong allied health team, Michelle says she wasn’t always sure she would be successful in getting the bike onto Liam’s plan, particularly in the beginning.
Michelle didn’t think they had a chance of getting the bike, despite the fact the Occupational Therapy had done a great job on the report.
The Sexton family have been reflecting and carefully planning how to create a positive life for Liam, Michelle says helping to identify some goals has been especially important with Liam transitioning from school to day placement.
With Liam approaching the end of high school, Michelle talks about her search for the right day program – something that can be an overwhelming challenge for parents of children with disabilities.
When picking a day program, Michelle says it’s important to relate it to goals. If the goals are kept reasonably broad, that can help as it gives you a lot more scope to do things. Michelle says the biggest goal is to give Liam the best quality of life as they can.
Michelle feels optimistic about the future. When describing her search for the best day program, she offers practical advice for other parents, explaining that it comes down to lots of research, looking at how staff interact with participants, getting feedback from parents and therapists, and getting a feel for the program. Michelle also says that an element of picking the day program comes down to gut instinct.
For what has been an incredibly tough year, what must surely be a memorable highlight was seeing Liam get his bike on his 18th birthday.