'Letting go of those dreams does not mean losing hope': A father's words on raising an autistic son

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'Despite all his challenges, he excels'
'Despite all his challenges, he excels'

Here dad Johan shares the highs and lows of his experience raising his autistic son, from his diagnosis at age three to now as he tackles the teen years. 

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 we 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 three years later, after having tests done in France, we received a diagnosis of PKU.  By that time Migael was also presenting symptoms of autism.

Also see: Autism, Alexithymia and Empathy: What you need to know

The grief of letting go

After 13 years of being on this journey with our son, I still have moments when I cry out to God and ask why.

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.  

"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

But those moments are only a fragment measured against the love and joy we experience raising Migael. 

The grief of letting go of "my dreams for him" has long since been replaced with an acute awareness of the small miracles that happen every day.  

Letting go of those dreams does not mean losing hope.  

Also read: How animals can help autistic children 

Focus on the 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.  He is so proud of the items he creates during sewing lessons and knitting.  

He loves helping his mom in the kitchen and tidying up and we joke that he even unpacks the dishwasher better than me!

Despite all his challenges, he excels at sewing, cooking and horse riding!  

It did not come overnight, but I learnt to cherish the time I spend with my son in spite of the heartbreak we faced while trying to help him. 

Once I realised that grace is found in moments my son fully enjoys, and I get to witness it, my eyes opened to his world.  

Work as a team    

Probably the most important thing is to never let go of your wife's hand. 

The realities that families living with autism face are that our children grow up and the autism does not disappear.

You have to work as a team, even if it means taking shifts.


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