I know it’s impossible for every person in the world to see my son the way I do. People have preconceived notions about how it must be to live with a non-verbal child on the Autism spectrum. They make assumptions and, in many cases, project themselves into the shoes of his caregiver. It all must seem like an overwhelming responsibility.
Don’t get me wrong. It is. Raising Lucas is a tough task and, although raising his sister was hard too, it’s totally unique in its challenges. It’s packaged together with anxiety and guilt for so many different reasons; most of which are mine. My son’s needs, while challenging for me at times, are nowhere near what others might imagine.
In many cases, the things they imagine say more about them than Lucas. They don’t have any basis to really judge or understand because they haven’t spent much time with him. He’s a cautionary tale to random moms and dads on the street. They clutch their kids’ hands, shudder at what they assume I am going through, and try to stay “thankful” for all they have.
The thought of that makes me a bit nauseous, but it’s not my place to judge it. After all, every experience we face in the world is centered around how it makes us feel as individuals. I want no pity from anyone for him. He’s my favorite boy on Earth. That said, I can’t control whether anyone else feels that way. I wouldn’t want to control it either. Their reactions are their reactions. I can’t dictate how they should feel and, unless they approach me with questions about it, I don’t really care either way.
The strange twist on all of this is that those people with poor views aren’t always strangers. Sometimes those looking past who he truly is are people who know him firsthand. They might see him and interact him. Yet, they don’t see what I see. To those people, he’s someone else.
When Lucas was first diagnosed, I tried to get ahead of any negative reaction from family, friends, and confidants by having him perform for them like a circus act. Within minutes of noticing someone’s seemingly negative reaction, I’d turn into a carnival barker, urging one and all to come see the show.
He waves. Look. I’ll show you. You want to see? Watch this. Hi, Lucas. Lucas. Lucas, look at me. Say hi.
I’d then adjust his head to turn his gaze from across the room back onto me.
There you are. Say “hi”, buddy. Hi, Daddy. Say hi. Hello. Hi! Hi there!
Nothing. Now I have a confused audience looking back and forth between him and me. With every passing second, I felt like we’d be falling deeper and deeper into a pit of despair. Sometimes they’d offer the classic line.
It’s OK. He’s probably tired.
Yeah. Tired. I regularly ignore people when I’m tired. He slept for 12 hours and woke up an hour ago. But yeah, let’s go with tired. Ugh.
I’m embarrassed that I acted that way in hindsight, but I can’t fault myself for it. I feel like my son is an extension of me. Those who sneer at or fear raising someone like him hurts me deeper than I can explain. I want everyone to see him in the same light that I do and appreciate the unique individual he is. His view of the world and pure excitement for the people and things he loves are unlike anything I’ve ever experienced. To me, it’s unmistakable how special he is as a human being.
Not everyone values that, though. To some, a well placed “hello there” trumps any sort of unique perspective on life. They don’t see him as some amazing creation who changes how they view the world. He’s just a kid who doesn’t talk to them. And, to be completely blunt, that point of view sucks.
It may have taken many years, but I finally realized that those opinions don’t matter, even if those people, however they factor into our lives, do. It doesn’t matter what anyone on this planet besides me thinks about Lucas. Not only is my opinion the most important, but it isn’t within my power to change their perceptions anyway. All the “say hi” performance art in the world won’t alter someone’s thought process about raising a child like him. That’s something they have to change themselves.
It hurts to think that, for some, all the time in the world won’t affect their view of who they believe him to be. They could spend every moment of every day by his side and still never fully appreciate the gift that he is. They miss the big picture, but I don’t.
I don’t look at my son as someone who needs to do anything in order to earn my love. I don’t focus on missing Father’s Day school art or deep conversation that, admittedly, I looked forward to on the day he was born. I see him as someone who loves me, even though he doesn’t have to. I value every hug and smile because I know that those aren’t things he does out of a social obligation. Social obligation isn’t even on his radar. If it was, he wouldn’t be stealing the leftover pieces of pizza at his sister’s birthday party and shoving them into his mouth.
He’s the greatest boy in the world. Over time, I came to realize that my job isn’t to make other people recognize that. Some just won’t and that’s OK. They don’t have to.
I do. That’s all that matters.