Pain is part of your story. You can’t escape that. The dire moments and dark times all make up a greater narrative. They lead you to paths and push you through the journey. What doesn’t kill you makes you stronger.
Sometimes, though, it does kill you. That’s the problem. In the moments you endure it, you don’t know if that pain is the type that will make you a better person or the type that finally does you in.
This is where I should offer an apology. For years, people would applaud me for “supporting” my special needs child. I took offense to this statement and, in a lot of cases, I was right. In my mind, it sounded like I was being commended for not walking away from a boy I love with my whole heart. I took it as an insult to him and a gross underestimation of who I am as a parent.
Yet now, after these past few personal rebuilding years, I get it. I know what, at least some of, those people meant.
The initial shock of Lucas’s special needs was jarring. I remember the haze and despair that haunted my head and my home. I didn’t do anything but worry and blame myself for the possible role I played in it. I was surrounded by others who also worried and blamed me for the possible role I played in it. It was a lonely toxic time and nothing I was doing was making it better.
Do you know what all that worrying did to fix the situation? Nothing. In fact, the worse case scenarios that I was incredibly fearful would happen all sort of came true. He didn’t “snap out of it” or “catch up.” Ten years later, there are still no verbal words and many basic life skills are still outside of his reach. Things we’ve tried to teach him for over a decade are still being worked on.
And, even in the face of all that, we’re fine.
I say that a lot in these blog posts, but that’s because it’s important. I want you all to read those words and internalize them. I’m not overselling our lives as the picture of perfection. No one’s life is. It’s not fantastic to still be tying my son’s shoes at eleven or helping him with eating utensils. I don’t get giddy over staring at him while we’re at a party or worrying he will steal someone’s dinner if his impulses take over.
Then again, I have a fourteen-year-old daughter who is neurotypical and guiding her is fine too. To say raising her and all her young womanly mood swings is fantastic would also be overselling. It’s parenting. It’s family. It’s fine. We’re all fine. The great moments are great and the not-so-great moments are not so great. But, just like her brother, the good outweighs the bad and we have an unbreakable bond of love among us to push through the moments when we need it.
Lucas has autism and is non-verbal, but Lucas is also a kid. Kids are tough. Even if my son had been born with the ability to one day use verbal language, there was a chance he could have been an awful little goon-boy. I see kids every day who use their words to spew hatred and disgust. They grow up to be awful adults. I know their parents. I know who these kids will be in 30 years.
I get what those people who commended my fathering of Lucas meant now. It wasn’t just about giving up or running away. I could have stayed, yet decided that he was too much work. From that moment on, I could have drowned in sorrow and just done the bare minimum to keep him alive. He would be content to spend each and every day in his room, on the iPad, and ignored by the family. I could have wasted my days wasted for days, face down on my bed crying over everything that I imagined would be “perfect”, while he just lived a life of nothingness. No one would have known. No one would have cared.
Had I jogged in place rather than forward, life would have been a treadmill without change. There would be no trips to the park or bowling outings or dog park events. There would be no Lauren and Christian. There would be nothing but our own miserable jealousy over things that we “deserved”. I could have pined for a life that I thought I was entitled to without ever appreciating the wonderful life that we had. I’d be crying with my eyes closed, rather than looking around me.
I could have justified it too. After all, tell someone without a non-verbal kid that you have a non-verbal kid and their reactions go across a spectrum wider than autism. Their eyes show you pity and concern. They imagine wearing your shoes and shudder at the thought. They make you feel like a hero for just getting out of bed and give you an out simply through the expressions on their faces.
It’s easy to play the victim when people see you as one.
That statement is incredibly true, but you’ll never achieve anything until you refuse that label. Once you can say, “I am entitled to be a victim and I have a right to be sad, but I won’t do it anymore,” that’s when you can really make great things happen. Willingly giving up that Get-Out-Of-Everything-Free martyr card is like saying that you want more for yourself and the people you love. That’s what I said.
I’m not presenting that as some sort of positive meme to show your Instagram friends. I’m saying that as a fact. Once you realize that you can be miserable and get away with it, but choose not to, you’ve made a conscious decision to reach greater heights. You tell yourself that you’re worth more than sad glances and built-in excuses. You don’t let the world tell you who you should be, you tell the world who you are.
It’s been a rough few years, but I got through it. I got through it because my son showed me that I’m stronger than I ever knew. If not for Lucas, I wouldn’t be as confident as I was that other obstacles in my life could get better. I wouldn’t be standing here today, twice as tall as I was two years ago.
I owe that boy a big thank you. He’s made me a better person and, for that, I’ll happily tie his shoes for as long as he needs.