A father opens up about loving a child with autism, and how finding the small miracles in every day has helped him experience the wonder of his son’s world.
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 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.
The diagnosis
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 nearly three years later, after having tests done in France, we received a diagnosis of Phenylketonuria (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.
“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
Jason Hague’s words resonate deeply with me. 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.
Small miracles
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’ve learned to cherish the time I spend with my son. It did not come overnight, as we faced heartbreak while trying to help him. Once I realised that grace is found in moments my son enjoys fully and that I get to witness it, my eyes opened to his world. I operate two truck wash businesses in George. Migael’s greatest joy is visiting the sites over weekend followed by lunch at the 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 installed the medicine cabinet again. It was was taken down eight 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 I 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.
Ongoing support
We started Legacy Centre, a one-on-one tutoring centre for children with learning/social challenges) five years ago. We have experienced overwhelming acceptance by the Garden Route community. Our teachers focus on the life skills and tutoring of the 16 children.
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 Migael will be looked after in a safe place when we are not here. Our long-term goal is to develop a centre for young adults where they can reside and thrive in a familial environment.
Read more about parenting a child with different needs
