My son Alex is non-verbal and needs 24-hour care. He thrived at a mainstream school

As I reflect on the differing viewpoints around the disability royal commission’s recommendation to phase out special schools, I can’t help but think of my own journey through the education system with my son, Alex.

I am a parent who has faced the choice of how best to educate my child with a complex and severe disability. Choosing the right education pathway is a significant decision for a parent, but when your child has developmental concerns or a disability, accessing the same quality inclusive education with supports as needed is paramount.

Penny and Alex Graham.Credit: Kate Geraghty

My son Alex has severe physical disabilities - he cannot walk, stand or sit and suffers from dystonia, a condition in which he experiences constant muscle tightening across his body, and a rare genetic condition called GNAO1. He is fed through a port in his stomach, is non-verbal and requires 24 hour care. Alex uses a power chair for mobility, but needs someone to operate it on his behalf.

Above all, though, Alex is a legend. He has a wicked sense of humour, loves NRL and gaming, and is now 22 years old.

When I told people Alex would attend a mainstream school, most people wondered how it would work. It took a lot of energy, planning and time to ensure staff were supported, and that training was provided to the school’s head of Learning Support about his communication styles and learning needs.

Before Alex, the school principals knew little to nothing about complex disabilities. But both showed commitment to ensuring the collaboration between staff, Alex and our family was productive.

Alex is the youngest of four siblings and received an initial diagnosis at six months. At the time, I remember feeling that I didn’t want to enter what felt like a separate world of disability. Perhaps it was fear or ignorance of what lay ahead. Whatever it was, this feeling drove me to find a way to give Alex the same experiences (or as close as possible) to those of his sisters. I knew what I wanted for him, which was the opportunity to learn alongside his peers, to be included in curriculum activities and to be a happy child.

When I walked through the gate of our local preschool, a then three-year-old Alex held snugly in my arms, other children raced by me, running and skipping independently. I knew Alex would never be mobile without help but I was still unaware of what lay ahead.

Alex Graham with his three sisters.

I wondered how it was going to work. But immediately, Alex was embraced by staff and peers, and soon we learnt how to arrange input from Alex’s therapists. It was a learning journey of creative solutions, adjustments and modifications as we found ways to include Alex and the staff supported his learning.

Yes, there were bumps along the way. Many meetings and challenges to work through, but the same happened with Alex’s sisters, too. There were times of deep sadness and grief. One parent once asked me why my Alex wasn’t at the special school across the road where “the others” were?

By the time primary school arrived, it was logical that Alex would follow his peers and transition to the local school. He had been to birthday parties, developed solid friendships, and I had a group of supportive parents and staff around me.

He joined a local soccer club using his walker, and played for four years. The energy from being involved in a community club was empowering for both of us, and I began to realise the power of real inclusion and what it meant to our family.

His transition to high school was more complex, but it was still clear that Alex wanted to follow his peers and continue being part of his community, and that his peers and educators wanted that for him too.

Still, I decided to look into a support unit at another high school. When the principal pointed to a classroom and said, “this is the Downs Room”, I became certain this wasn’t the right option or place for my son.

Alex and Penny Graham

Giving him an inclusive life began with education and the support that came with attending mainstream local schools.

I knew mainstream school offered an environment of high expectations for Alex, and research shows people with disabilities have consistently, for decades, performed better academically in these settings than in special schools.

From primary school, Alex used his speech device and iPad, coupled with assistance technology, to work, complete tests and participate in class. In high school, his exams were modified to offer multiple choice answers and apps, including reader assistance, were used. The use of Eye Gaze technology, along with other accommodations and adjustments, ensured he was able to academically shine across all of his subjects (even in French classes). He was frequently elected team leader in group work, delegating roles and tasks.

Alex now lives on his own, supported through the National Disability Insurance Scheme, and has just launched his own business. His HSC hangs proudly on the wall of his unit, beside his year 12 formal photos.

Our journey of mainstream education was absolutely the right fit for our family. It helped us see life through an inclusive lens.

The commission’s recommendation is, in my view, trying to ensure people like my son can be supported to learn and participate with adjustments and accommodations within their communities. Other people’s journeys and choices may be different. But for our family, the mainstream education system was the crucial factor giving Alex a positive launch into life.

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