As the parent of a non-verbal 12-year-old, one statement is completely true but often overlooked. I’ve had 12 years to get used to the idea of parenting a non-verbal child.
Think about it. I’ve had 12 years to come to grips with this unique challenge my son has. I’ve had 12 years to figure out alternative forms of communication that work best for us. I’ve had 12 years to learn who he is, what he wants, and exactly what autism means in the context of our lives.
To someone who just learned about Lucas five minutes ago, they’ve had, well, five minutes to figure things out.
It’s so easy to forget that. To me, this situation is nuanced, with many aspects to discuss. My mind is trying to figure out issues that we are facing, best-possible scenarios, and plans for his future. When talking about him with a friend or someone new, I’m usually 12 years ahead of their thought process
For them, the questions can be basic. They also always begin with an apologetic explanation.
Can I ask you…and I’m sorry if this insulting. I hope it’s not. I don’t know if, actually, how to say it…
Someone reading this might expect some insane statement to follow. But no. Those who insult you don’t usually ask permission beforehand. Anyone who has ever given me that pre-ask explanation has never asked something insulting. The questions that follow are usually things like:
How does he tell you what he wants?
How do you know if he understands you?
How did you figure out how to communicate with him?
These people are good people. Not only do they want to ask about my boy, but they make special sure that their questions aren’t out-of-line, even though they clearly aren’t. They are borne out of genuine curiosity with an aim to better understand his place in my life.
I appreciate these questions and I invite them to be asked. For most of his life, Lucas has often gotten the short end of the stick. From people not saying hello to him to events that we drag him to and expect him to quietly endure, my son has faced a lot of situations that have been dismissive of his wants.
When he was little, I used to tell him, “The squeakiest wheel gets the most grease. You need to learn to squeak a little more, buddy. Get their attention.”
Today, there are still no squeaks. So, I squeak for him. I am ready to help the world learn about him. Questions like how we communicate and the ways to break through when one member of a duo doesn’t use verbal language aren’t insulting. They are real and help the world better understand a situation that, to most, seems impossible to navigate.
That initial trepidation over these questions from well-meaning people shines a light on how easily they can be left unsaid. It also shows you the amount of curiosity that exists in the world. I think about that often.
When it comes to autism awareness and acceptance, whether verbal or otherwise, the key is helping others to understand. If my son is a mystery or a cartoon puzzle piece to them, they’ll never grasp what autism means to us or how a non-verbal boy can fit into a verbal world.
It’s that fear of asking, however, that keeps so many well-intentioned people at arm’s length. It contributes to the loneliness that some special needs parents feel and builds a wall around us that we don’t even realize is being built. Before you know it, you’re trapped in a cell of silence and assuming the world is against you.
They’re not. They just assume a child’s “disability” is a delicate subject and fear it will be met with anger or hurt. It’s on us to show that, when not done with malice, any question is welcomed.
I learned this through my openness. When Lucas was little, discussing him was difficult at times. I kept quiet about the good and bad points of parenting him. During those times, few people asked about it. I assumed that no one cared. It was a time of emotional seclusion.
Since I started putting him at the forefront of many conversations, I noticed a huge shift in how the world perceives him. I see that people often want to talk about him. He’s not as overlooked or ignored as I feared when he was younger. I just hadn’t given anyone the outlet to ask or the assurance that it was OK.
It is more than OK. I want you to understand him. He’s one of the two most important people in my life. Ask me.
As parents of children on the spectrum, it is important to always remember that autism awareness, acceptance, and appreciation begin with us. Let people know that your child is not a fragile subject they need to dance around. Your child is your pride and joy. Let the world learn to love them just as you do.
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