The parenting journey is rarely the one we plan for. For my family, this truth arrived with a force that changed everything. My son Leo’s story is one of incredible challenges, but it is also a story of progress, growth, and the unique path we have forged. For families considering homeschooling a child with autism South Africa, our experience may offer both comfort and practical insight. It shows that even when faced with immense obstacles, a tailored, loving educational environment at home can make all the difference.
An Unexpected Journey: From Leukaemia to an Autism Diagnosis
Leo was a healthy, happy baby, meeting all his developmental milestones. At 15 months old, our world turned upside down when he was diagnosed with acute lymphoblastic leukaemia. We were rushed 400km from our home in Louis Trichardt to Unitas Hospital in Pretoria, where Leo spent months undergoing treatment.
Less than six months into his chemotherapy, Leo began having seizures and episodes where he would stop breathing. An MRI scan revealed he had developed neurotoxicity around his brain. It was a year later, when Leo was three, that a neurologist first used the words “autism spectrum disorder” (ASD). While one neurologist suggested he was born with it, another later confirmed my suspicion that it was caused by the neurotoxicity.
This dual diagnosis was a devastating blow. The term ASD is an umbrella diagnosis that covers conditions like autistic disorder and Asperger’s syndrome. As the
Centres for Disease Control and Prevention reports, ASD is estimated to affect about one in 54 children, with symptoms typically appearing between 18 months and three years of age.
The Challenge with Traditional Schooling
As Leo’s health improved and he entered remission, he was able to attend a wonderful nursery school where he thrived. However, after the Covid-19 school closures, an obstacle arose when schools reopened. The Department of Education objected to Leo, then seven, being in a kindergarten class with toddlers. Despite explaining his special needs and academic abilities, the department insisted we find an alternative. This experience is a common one for parents navigating a child with autism and school challenges, where a rigid system fails to accommodate individual needs.
Embracing a New Path: Special Needs Homeschooling
This obstacle forced us onto a path we now embrace. During school closures, I had already started working with Leo at home, using activities from his occupational therapist and worksheets from local teachers. Leo has always enjoyed schoolwork, and we discovered the beauty of learning at his own pace.
Our approach to special needs homeschooling is built on patience and celebrating every small victory. There is no rush. If it takes him longer to master pencil-gripping because of low muscle tone, it does not bother us. We know he will get there in his own time. Recently, he mastered cutting with scissors, a huge milestone for him. This focus on individual progress over standardised timelines is one of the greatest gifts of home education.
Adapting the Curriculum and Finding Support
Adapting curriculum for autism is about understanding your child’s unique strengths and challenges. For us, it means focusing on what Leo enjoys, like colouring, and building skills from there.
For South African parents, you are not alone. Organisations like Autism South Africa provide invaluable information and support networks. Connecting with other families on a similar journey can provide emotional and practical support that makes a significant difference.
Our journey has been shaped by another medical challenge, as Leo was also diagnosed with Hirschsprung’s disease earlier this year. Life remains unpredictable. The past six years have changed me from a relaxed mother into an over-protective one, but they have also filled me with immense pride.
“I’m really incredibly proud of Leo. I’m proud of all of us, of the progress we’ve made and how we’ve grown as individuals and as a family,” I often say. This journey, while born of pain, has shown us the depths of our own resilience.
Are you homeschooling a child with special needs in South Africa? What have been your biggest triumphs and challenges? Please share your story in the comments below to support other parents on this path.
If this story resonated with you, please share it with others who might need to hear it.