Written by: Johan van Deventer
Article source: JOY! Magazine

I believe that it is time for more fathers of children with special needs to make their voices heard. Fathers of children with challenges need support, they need someone to take their hand through the process of mourning and acceptance. Believe me, it as a tough journey and us men need all the help we can get. My wife and I adopted our son, Migael, in 2008. He was only 19 months old. Little did we know how our lives would be affected by this little whirlwind.

A long journey…
We were in our late thirties and completely overwhelmed by receiving our miracle son. We had no idea what was considered ‘normal’ until a friend suggested that we consult an occupational therapist regarding his behaviour. There our journey started and eventually, nearly 3 years later, after having tests done in France, we received a diagnosis of Phenylketonuria (PKU), a rare but serious inherited disorder. By that time Migael was also presenting symptoms of autism.

Migael has grown up to be such a loving, friendly, and not-too-difficult teenager.

Asking God WHY?
After 13 years of being on this journey with our son, I still have moments when I cry out to God, “WHY? Help my son … help us!” In those dark moments I read Jason Hague’s poem, A Reflection of Aching Joy, which he wrote for his autistic son, Jack. Jason’s words resonate deeply with me. But those moments are only a fragment measured against the love and joy that my wife and I experience while raising Migael.

Celebrating small miracles
The grief of letting go of “my dreams for him” has long since been replaced with acute awareness of the small miracles that happen every day. Letting go of those dreams does not mean losing hope. Migael has grown up to be such a loving, friendly, and not-too-difficult teenager. He is non-verbal and communicates through his tablet and with sign language. Despite all his challenges, he excels at sewing, cooking, and horse riding!

Cherishing time with Migael
I learnt to cherish the time I spend with my son. It did not come overnight as we faced heartbreak while trying to help Migael. Once I realised that grace is found in the moments my son enjoys fully and I get to witness, my eyes opened to his world. I operate two truck wash businesses in George. Migael’s greatest joy is visiting the sites over weekends and to eat lunch at the Geronimo Spur afterwards. He even places his own order (chips and water with loads of lemon). He is so proud of the items he creates during sewing lessons and knitting. At home he loves helping his mom in the kitchen and tidying up. He even unpacks the dishwasher better than his dad, and I am ever grateful! I recently installed the medicine cabinet again, which was taken down 8 years ago for fear of Migael getting hurt. Now he loves putting his toothbrush away. This is what I mean when I say focus on the small miracles. The most important thing is to never let go of your wife’s hand. You have to work as a team. In our house it means being hands-on in shifts while your partner takes a well-deserved break.

Legacy Centre is a tutoring centre for children with learning challenges. We give parents the support they need with raising happy special needs children.

Legacy Centre – a place of refuge
We started Legacy Centre, a one-on-one tutoring centre for children with learning/social challenges, 5 years ago. During the past 5 years we have experienced overwhelming acceptance by the Garden Route community. Our teachers focus on the life skills and tutoring of the 16 children. Supporting the families of the 16 children attending Legacy Centre is of extreme importance to us.

A long-term goal
The reality that families living with autism face is that our children grow up and the autism does not disappear. As his parents, we have to work on a secure future for Migael and young people like him. We have to know that when we are not here anymore, Migael will still be looked after in a safe place. Our long-term goal is to develop a centre for young adults where they can reside and thrive in a familial environment.

“Because you are not a disorder, my son, Not a blue puzzle piece
On a clinical spectrum. But neither are you normal, You’re a piece of God’s own daydreams A reflection of aching joy. No, you’re not normal.
You are… beloved.” Jason Hague – A Reflection of Aching Joy

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Date published: 30/09/2021
Johan Van Deventer and his wife Mariza run the Legacy Centre tutoring centre for kids with special needs. They are based in George, Cape Town. You can email legacycentregeorge@gmail.com or visit
www.legacycentre.co.za.

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