[An edited version of this post first appeared here.]
C: “Mister Miss Fairy!”
Me: “Carrots and Potatoes…”
His older brother: “…with Beef Stew!”
These are words my sons and I say to each other whenever C is upset, feels threatened, or thinks he’s in trouble. And to diffuse the situation and reassure him, I would respond with the “carrots” line, and his brother the “beef stew” line.
These words have no meaning. But to my ten-year-old, it’s how he expresses his disquiet over volatile situations, and how we let him know all’s good.
Welcome to life with my autistic son!
He doesn’t “get it”
An unavoidable reality in the world of someone with autism is this: he or she will often be tangent in social conversations and settings. How “tangent” will depend on the autism’s severity.
Autistic people frequently don’t “get” jokes, especially insider ones. They also won’t reciprocate or engage in protracted conversations over various topics, or even a single topic. Especially if it isn’t something they’re keen on.
At a party, don’t look to them to break the ice or be its life. Even if it’s their own party!
I’ve lost count how often I’ve tried to engage C in conversations about everyday things. Even now when he’s ten, he still won’t go head-to-head with me when it comes to maintaining a line of discussion.
A good example would be road trips.
As we travel from place to place, I talk with him about sights and sounds around us (plane in the sky, tree-lined boulevards, other vehicles on the road). However, he always returns to talking about road signs, road works, coaches and buses, land transport being his favourite topic.
Even when not on the road, like during meal times. He would repeat things he heard Google Maps talked about, or make-up pretend road accidents that took place somewhere in Singapore. Like a radio traffic announcer!
These are some of the many things I’ve come to learn about his “socially different” communication skills since he was young, and especially after his official autism diagnosis.
It was a tough diagnosis to swallow for any parent, especially us.
Us who waited over a decade after marriage for his arrival.
Us who had to make the difficult decision to send him to a special needs primary school instead of a mainstream one.
Late parenting. Autism diagnosis. Educational redirection.
It just felt like a triple whammy straight from heaven above!
Abraham’s long road to fatherhood
For the longest time I questioned God why.
I’ve wondered if Abraham felt the despair I did, and still do. All those childless years before Isaac came along. Abraham must understand how it felt. And he must have rejoiced like I did when the pregnancy finally happened.
Many times over the near-decade it took me to become a parent, I recall the story of Abraham and Sarah’s long journey to parenthood and I took comfort.
Surely God understood right?
But when C was diagnosed, I found myself in despair, rage and denial about this “new setback”. So I returned to the Bible for solace before I lost my mind! I wanted to know: were there special needs people in the holy book?
Recently I found myself drawn back again to Abraham and Sarah’s story.
That’s when I noticed something.
Was Abraham a special needs father too?
Though the next-in-line after his father, accounts of Isaac in the Book of Genesis pale in comparison to Abraham and, later on, Jacob.
Instead, what I noticed were that Isaac:
1. tamely followed his father to his execution (Gen 22); carried all the wood up the hill for the altar fire (meaning he had to be older and stronger than my sons); and didn’t resist when Abraham tied him onto the altar to be burnt;
2. needed a go-between in order to find himself a wife (Gen 24);
3. acted rather child-like when he declared his wife his sister to avoid possible death (Gen 26);
4. was blind in later years (Gen 27).
Might Isaac have been someone in the bible with special needs too, just like my C?
Might I have yet another thing in common with Abraham?
Conflicted
Raising C, speculations like the above about bible characters, while fraught with misinterpretations and potential sacrilege on my part, helped me cling on to hope.
Hope that God understands I daily need His grace, power and enabling to accept C for who he is.
That hope is what will raise him up to achieve his fullest potential, despite challenges he will face.
Especially when it comes to interacting with people who don’t understand his uniqueness, including me!
Many were the times I felt conflicted.
Do I insist C answers every question, and stay engaged in conversation? Knowing he needs to demonstrate conversational skills every year during his oral exams, surely that’s the right thing for a responsible parent to do, isn’t it?
Studies aside, the act of holding a conversation well helps navigate many human interactions in life. Surely I’ll be remiss if I didn’t help C develop this key survival skill, right?
However, sometimes I just want to enjoy whatever conversations I have with my son. No matter how repetitive or boring the topic was to me!
After all, what right have I to insist he “joins our world”, if I’ve not even attempted to enter his and understand things from his perspective?
Therein lies the gospel message too, doesn’t it?
Why else did Jesus descend to our fallen, imperfect and “special needs” world? Wasn’t it to connect with us first, in order to connect us back to our heavenly Father?
The Journey Continues
So the journey continues for this father every day; to learn to let go and let God. To cling to the hope expressed by prophet Jeremiah in Jeremiah 29: 11 ––
“For I know the plans I have for you…plans to prosper you and not to harm you, plans to give you hope and a future.”
If that means hearing funny lines like “Mister Miss Fairy”, then so be it!
And as I pause this month of April that promotes and celebrates people with autism, I’m glad that instead of calling this annual event the Autism “Awareness” Month, there’s a call this year to reframe it as the Autism “Acceptance” Month.
It’s what I must do daily — accept and celebrate C and others like him for how God’s made them.
It’s what I believe all caregivers must do.
