“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
Legacy Centre was established by Johan and Mariza van Deventer in August 2016 when they were in need of a facility for their son. Below, Johan writes about how fathers with children that have special needs, should make their voices heard and how his journey started.
I believe 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 is 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.
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 PKU. By that time Migael was also presenting symptoms of autism.
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 listen to Jason Hague’s poem- A Reflection of Aching Joy which he wrote for his autistic son, Jack. Jason Hague’s words resonate deeply with me. But those moments are only a fragment measured against the love and joy we experience while raising Migael. 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. 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!
I learnt to cherish the time I spend with my son. It did not come over night as we faced heartbreak while trying to help Migael. Once I realised that grace is found in moments my son enjoys fully and I get to witness it, my eyes opened to his world. I operate 2 truck wash businesses in George. Migael’s greatest joy is visiting the sites over weekends and to eat lunch at 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 does, and I am ever grateful! I 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. Probably 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 break.
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.
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 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.
For more information, visit legacycentre.co.za