The University of Johannesburg (UJ) played host to a transformative retreat for the Fathers of Children with Neurodiversity (FCN Tribe) from 25–27 October 2024 at the UJ Island Retreat. This unique gathering created a safe space for fathers to share their personal journeys, learn from one another, and find support. Two members of the FCN Tribe, Mr Twala and Mr Buzwe, reflect on their experiences of raising neurodivergent children, highlighting the power of community, self-awareness, and resilience.

Twala’s experience

I was never prepared for fatherhood. I thought I was because I used to play with, nurse, feed, and bathe my nephews and nieces, whom I loved and still love dearly. But when my son was born, the magic of holding him for the first time erased all I thought I knew about children. It was an experience beyond explanation—far beyond the moments I had with my nephews and nieces. It was pure magic, a euphoria greater than celebrating all my achievements.

At that moment, I knew I would never be the same man again. As I held this precious little human being in my hands, his mother’s words echoed in my ears: “There’s your son.” Watching him being breastfed became my favourite pastime, a moment beyond measure. I marvelled as he grew from this tiny person into a beautiful boy whose face lit up with joy whenever he saw me.

I vividly remember my dreams, wishes, and plans for him. I envisioned him as a rugby player, given his now-big physique. He was a big baby—full of life, with puffy cheeks and buff little arms—a marvel to admire. I felt proud as a father, always in a celebratory mood for this gift from God Almighty. Being a lover of literature, I had already planned how I would nurture his love for books, including education policies and strategies to guide him through life. Little did I know what awaited me. He was late to walk, delayed in potty training, and, yes, I was deeply involved in it all—much to his mother’s annoyance at times. The reality struck at his kindergarten when the teachers informed us that he was different from other kids. He struggled to focus and couldn’t pay attention like his classmates. He didn’t participate in class activities and only seemed to enjoy playing outside with swings and other toys.

When the Autism Spectrum Disorder diagnosis came, saying I was shattered would be an understatement. I watched my dreams evaporate. There were moments I didn’t even want to pray anymore, questioning God Almighty: What wrong have I done to deserve this? My separation from his mother only made the situation harder. Yet, 21 years later, after enduring so much while raising him on my own, I am at peace with God, at peace with the diagnosis, and, most importantly, filled with joy at having found my tribe: Fathers of Children with Neurodiversity (FCN). A few months ago, we bonded during a retreat at the UJ Island outside Vanderbijlpark, united by one goal—to create a better environment where our children are accepted, seen, and integrated into society while also finding healing as fathers.

I was the only father who brought my son to the retreat, and he didn’t disappoint. All the fathers embraced him, which filled me with happiness and lightened my heart. I felt the weight of worry lift. His presence opened the eyes of fathers with much younger children, showing them what to expect as their sons and daughters grow older, reaching their 20s like my boy. It taught us all that it is not something to fear, but something to accept and live with.

Buzwe’s reflection as a father

I shared on the subject of self-awareness to help fathers better understand their mental state. Drawing from my own personal experiences with depression and past suicide attempts, I journeyed with my fellow fathers through the challenges that led me to interrogate and understand my mental disposition. This self-awareness allowed me to identify when I was approaching my mental pressure points. The goal was to help fathers establish a barometer for recognizing when things are becoming overwhelming, so they can avoid falling into the “messiah syndrome” — where they care for everyone else but neglect their own mental health and well-being.

Through personal testimony, I shared my experiences of raising two boys, two years apart, with the eldest being on the autism spectrum. I discussed the challenges and triumphs of navigating the turbulent and tricky balancing act of ensuring both boys received adequate attention. Adding to the complexity was the dynamic of co-parenting as a divorcee. I described the exhausting commute and sacrifices made to ensure my sons never felt abandoned, despite their living arrangements being split between parents. This arrangement was necessary to ensure the child on the spectrum had access to resources crucial for his formative development. Over time, the aim has been to support each child’s individual interests and activities, fostering their growth and confidence.

Conclusion

Twala’s and Buzwe’s experiences underscore the power of community, vulnerability, and intentional parenting. As fathers, they remind us of the importance of fostering supportive environments for both children and caregivers. The FCN Tribe, supported by UJ, continues to create spaces where fathers can find healing and their children can be celebrated for who they are.

For more information or to get involved with the FCN Tribe, please contact [Prof MM Sefotho: neuroadmin@uj.ac.za].