“My son has been diagnosed with Autism.”
Person A shifts her feet nervously from side to side and smiles weakly before saying: “So how is your other son going? Has he had a good week?…”
Person B says,” Um, sorry – but what is Autism exactly?”
Person C says, “Ohhh…. that’s hard. I have a cousin whose son has Asbergers. Yeah. It’s not easy.”
Person D says, “What’s his gift? I usually find that kids with Autism are usually gifted at something even though they struggle socially. You never know, he might surprise you and turn out to be a genius and make lots of money one day! Haha…”
Person E says, “Oh, hat’s off to you. God must’ve known you could handle it and that you were just the right person for the job.”
Person F says nothing, but looks at me with the most compassionate eyes I’ve ever seen, and asks if she can give me a hug.
“I won’t knock back a hug,” I smile wearily.
And she just holds me…
Our son was diagnosed with high-functioning Autism in May 2014.
After years of asking why on earth he was so violent and defiant, and consulting numerous professionals for help with his behaviour, the news was a relief – but shattering.
All we wanted to do after drying our tears was give him a hug that said: “Now we understand why, matey…”
Not that he would’ve necessarily picked up on the subtle meaning behind that hug, or even accepted a hug in the first place.
Affection between my son and I consists of a stolen kiss on the cheek while he’s sleeping, and occasionally a brief embrace before bed. He rarely initiates physical contact.
How do I describe life with Jonathan?
Let’s just say it can be very intense for a quiet, sensitive introvert like myself.
To put it in simple, factual terms, he’s visited three different paediatricians, seen six psychologists, numerous school counsellors, dieticians, naturopaths – and performed two IQ tests to test for giftedness, just in case. He’s been grilled, questioned, spent more time in the principal’s office than the principal, and had more support teachers shadow him in the playground than the ghosts at Halloween.
He’s been well looked after.
Never did we imagine when we started our parenting adventure that this was the life mapped out for us. But who does?
Who expects any brand of hardship, whether it’s a failed marriage, or the death of an infant, or a life of chronic, unrelenting illness? Who plans on tough journeys and rocky roads (apart from the chocolate variety).
And I’ve had my share of chocolate in the last nine years of his life – or at least since the time his behaviour could no longer be explained away as ‘the terrible twos’.
Yes, my son has numerous meltdowns, anxiety attacks and aggressive, violent outbursts in the space of a week. He particularly enjoys throwing shoes at us and his brother. He goes in phases where he’s always on edge, ready to explode. He can’t put himself in other people’s shoes – understanding any point of view but his own is a big ask. He has a small soft toy he thinks is human and struggles to go anywhere without it. We can only expose him to social situations in small doses due to his anxiety. If he’s anywhere uncomfortable for too long he enters meltdown mode and we have no choice but to leave – and now he’s too big to carry out the door.
Often our family is divided in half, with my husband and I looking after one son each due to the boys’ fighting.
We’re currently working with psychologist number six to manage his mood swings.
But Jonathan’s emotions and reactions are not the only thing about him.
At the same time he can be deeply philosophical and curious.
He aced his Grade 3 NAPLAN test.
He laughs uproariously at a YouTube channel he loves.
He writes his own illustrated activity books and gets us to test them out.
He wants to be an author when he grows up.
He’s the most gifted young voice actor and singer I’ve ever seen.
And sometimes he prays, sings, and tells stories to God till 10pm.
My son has been diagnosed with Autism…
This simple statement doesn’t capture the tears shed for the son we assumed would be ‘straightforward’ in his development. The son we simply wanted to love, and love some more.
The son we do love, and love some more.
The son who’s broken our hearts and baffled us… but not defeated us, nor our marriage (which is a miracle since so many couples with an Autistic child end up divorced).
For our son we keep getting up every morning because that is what you do. And you’re not a ‘hero’ for doing it, nor a saint.
You’re just an ordinary person who God chose to have a child with Autism, and all that the experience entails.
I used to believe hardship and tough circumstances grew us.
But I’m not sure how true that is. Often, I just feel tired.
I envy the simplicity of families with ‘typical’ children. Yes, I know there’s no such thing as normal – but raising a special needs child can make me feel isolated. Sometimes I feel envious when I hear that my friend’s biggest struggle was that her child didn’t eat dinner. As much as that’s hard too, it’s difficult for me to get perspective sometimes.
And on occasion, when it’s been a particularly volatile week, all a person has to do is ask ‘how are you’ and I fall in an emotional heap and start venting and crying.
I am no different to any other parent who wants the best for their children.
Only the goal posts look slightly different.
That’s the thing. Hardships cause you to realign your expectations.
Not that you give up praying for healing and better outcomes and all that.
But you learn not to set your sights too high for fear of the next fall down-hill.
And like anything, you step it out. One baby step at a time. Sometimes crawling, sometimes running, and sometimes dragging your feet.
As long as you just keep walking.
And you never know – around the corner there might be someone waiting with a hug that makes everything OK, just for a moment.
And you round another bend just that little bit brighter, more purposeful, and full of hope…