Today, my son is ten years old and non-verbal with autism. It took a decade to get to the point we are at now in terms of awareness, understanding, and acceptance. Those first few years, however, were a doozy.
The way it works, for us at least, is that first the delays were noticed in silence. I saw him struggling to reach milestones that his older sister breezed through and it caused me unspoken anxiety. I didn’t say it out loud or share my concerns with others, rather building a wall of secrecy. When I finally did tell someone, those walls came tumbling down like Jericho.
I was at the crumbling-wall stage when a relative, famous for saying insane things, decided to voice some bizarre compliments. When she first tapped me on the shoulder and said it, I couldn’t believe my ears.
Your son is so smart.
She leaned in and whispered it as he clapped and hopped in circles. My heart was breaking and my stomach was aching. At preschool age, he still wasn’t saying a word. His actions, especially at the moment she said it, didn’t seem to be “smart” to an outside observer. To me, it was like telling a morbidly obese person that they’re so skinny or calling an old frail woman “young lady.” It cut me at a time when I couldn’t take any more cuts.
I tried to ignore her, but she persisted. It started to feel like it was being done on purpose to get under my skin, although I couldn’t say for sure. For that reason, I couldn’t “go off” as many reading this (myself included) wish I might have. Although, as time went on, the frequency of her strange comments increased. He’d do something that I knew wasn’t appropriate for a boy his age and she’d grin. Then, in my ear, she’d say.
Oh, look at him. He’s so smart. Right?
This wasn’t like another relative who once remarked that she “loves when he does his little hand flaps.” That could be chalked up to autism ignorance. This didn’t feel like a misunderstanding or naivety. It felt bizarre and purposeful.
There reached a breaking point during one holiday. She again whispered it, in a hush, as Lucas was leaned over the couch and shrieking at his iPad videos. I finally had to ask.
Why do you keep tapping me on the shoulder and saying that?
Her response only verified my inclination that something was wrong with her, rather than my son. She gasped, clutched her hand to her chest in a dramatic way, and said:
Oh! You don’t think that he’s smart?
Even writing that out makes me want to smash the keyboard into pieces. It was said in a way that implied something was wrong with me because I didn’t believe in my son. Today, I would better understand how to reply to that statement and explain the unique ways he actually is quite smart. However, as a newly diagnosed “autism dad”, the word “smart” was the furthest thing from my mind and this woman knew it. She just said things to say them, often eager for a reaction. Perhaps she was trying to find a way to broach the subject of his speical needs without saying it first. I told myself at the time that it wasn’t nefarious. Looking back, I’m not so sure.
When I’d tell people that story, they’d give me an “oh well” face and say something I’ve heard a million times.
Oh, she just didn’t know what to say.
You hear that a lot when your child has special needs. It’s the permission given to boneheaded statements from confused relatives and awkward friends at a time when you are at your lowest. For some, it seems to justify some of the worst statements you can hear when you need them the least.
To be honest, though, I don’t care if they don’t know what to say. Maybe they shouldn’t say anything at all. Actually, remove the maybe from that. They definitely shouldn’t say anything at all.
Sometimes questions like that are more for the person’s own need to pretend things are alright. Even as the parents are coming to grips with the situation and making plans to handle them, grandparents, aunts, uncles, cousins, and “how-exactly-are-we-related?”s all come up with dialogue meant to play-act. I went through those too. He was just shy of three years old when one of those people asked me:
What does he call his sister?
What do you mean?
Does he call her sister? Sissy?
First of all – sissy? What the eff? Second of all, I answered, with a truthfulness that was difficult to articulate at the time, but I did. I had to. She was forcing me to.
He doesn’t call her anything. He doesn’t talk. You know that.
She then looked my son in the face and, as if I was some random “hater”, told him:
Oh no. Don’t listen to Daddy. You talk. Yes you do. Yes you do.
Isn’t that a fun one? Wished that relative into the cornfield long ago for unrelated reasons.
As the years went by, there were a laundry list of statements that got under my skin and took time to handle. Some were to get information like the woman who sat next to me during our Music Together classes.
Those classes took place during some of our most dire moments and the behaviors that he displayed then were shocking to say the least. Most times, he tried to run from the room or lay on the cold floor. One time, though, he crawled across the circle of people and laid down on a newborn baby. Seriously – an infant. Despite seeing all of this for months and knowing he never uttered a word, the mom turned to me one day and asked:
Does he tell you he likes school?
It look a lot of effort to not say, “No, but he tells me that you’re a nosey little dishrag.”
You can go ahead all add of those to the statements based on genuine curiosity, but still stung. Things like, “Does he know it’s his birthday?“
Perhaps the most hurtful one of all was the close relative who had taken a vacation and returned with gifts for my daughter, but not my son. I didn’t say anything at first, but it came up a few weeks later. I questioned why she wouldn’t buy him something to commemorate her trip. I expected to hear “I forgot.” Instead, I heard:
Well, I once bought him a little doll and he didn’t care when I gave it to him.
Again, this wasn’t some distant cousin, but someone close. So, I felt comfortable enough to point out the error. I explained, even though I shouldn’t have had to.
Well, that’s not why we do it. I mean, he might not jump for joy or even care, but we get him things anyway.
The response cut me so much deeper than any physical scar I ever endured. I still have it to this day.
So, you’re saying we have to pretend?
Shock would be an understatement. I was left speechless in that moment. It served as a reminder that you can be in the same place with a person and still be miles apart. Statements like that make you feel more alone than anything else on Earth. It took a while before I could even gather my own thoughts up to have an opinion on it all. It lead to a whole new chapter of crumbling walls.
Luckily, the years have gone by and people don’t say stupid things anymore when they learn that my child is non-verbal. Today, it’s a big party. Everyone gets it.
I’m kidding. People still say stupid stuff. It’s not just a byproduct of having a special needs child. It’s a byproduct of people in general.
The difference today is that I know my son. I can reply with real insight into a person they aren’t lucky enough to know. There’s no sadness in my heart or fear that their words might be true. I’m not reminded of who he’s not because I love who he is.
He’s the most unique kid I’ve ever met in my life. Just because someone is verbal doesn’t mean they should speak. Hearing the dumb thoughts of others only reiterates how lucky I am to have him.