A woman once asked my wife, if we knew then what we know now about our severely autistic son Aidan, would we still have gone through with it. It of course being him. The answer to that question for most emotionally healthy people, is of course, yes. The woman didn’t really know any better, I guess. She was young. With no family yet. And she didn’t really grasp the fact that she was asking another woman if she’d rather her child had never been born. My wife gracefully brushed it off, only bringing it up to me in passing the next day.
A few years later, we completed a full genetic profile of Aidan. He didn’t have any of the clear markers that normally correlate with autism. But he did have a single gene deletion that we don’t know a whole lot about, other than it often coincides with a broader set of developmental and neurological disorders like dyslexia, ADHD, anxiety, addiction and other issues that all tend to orbit around autism. And since we have three boys, and two of them are on the autistic spectrum, that clumsy question that woman asked my wife all those years ago popped into my head again.
We’re not overly sensitive parents who seek to explain our parenting difficulties through diagnosis. If you spent 90 seconds in my house, you would get that. We’re dealing with children who can’t speak more than three word sentences, potty training near puberty, illogical emotional outbreaks and a constant flight risk that has put us in a state of perpetual vigilance that I haven’t felt since I was in Iraq. And it’s lasted for nearly eight years. We’ve got fifty to go. I hope.
From a purely statistical perspective, the chances of having two children on the autism spectrum is about one in five thousand. So it’s a pretty safe bet that either my wife, myself or both of us are carrying that gene deletion. Which is why the question popped into my head. Because I love my children. The thought of a day in my life without them ruins me. So the new info doesn’t change my answer. But it makes me ask the question differently.
That sounds like this:
If I met a young couple who had this gene deletion, what would I tell them?
If I met two people who were about to embark on the journey that we’re on, what would I say? Go for it? Let it fly? Or run. Push away from the table, turn and head for the door before it’s too late. Get out now while you still can. Save yourselves.
No. None of that. But maybe this:
I’d tell them that I love my wife like a wolf loves to hunt. It’s what I was put on this planet to do. I was made for it. It’s all things to me—my purpose and my bounty. Through all of it, it’s been me and her, the only two humans on the crazy planet us. And no one else is ever coming. So if we aren’t us, we’d be nothing. That’s what I’d tell them. Because that’s what it takes. And if that’s not them, then there probably shouldn’t be a them anymore.
I’d tell them more.
I’d tell them that I’m not Autism Daddy. He’s fantastic, really. You should read his blog. But he’s not me. No one is made for this stuff. But some are less so than others. That’s me. If there were a letter before A, that would be my type. I used to spend most of my time hunting and finding bad men so that the SEAL platoons I worked with could make them go away. Now I work in the high stakes technology sector where if I don’t produce, I go away. I make things happen. I insist that things are just so. I’m unwavering. I bend the world around me to do what I need it to in order to win. And I usually do.
I’d tell them that there’s no honest story here about how a once angry, impatient man found peace and healing and became the perfect father and husband his family needed. I wish I had that secret. But I don’t. I’m not a patient man. I get angry nearly every day. I lose my temper. I’m loud. Sometimes I scream. There are days when the horrible unfairness of it all pulls me into the darkness and all I can do is run away and throw myself headlong into work because that’s the only damn thing I can win anymore. Because I’m sick to death of losing and hurting and slowly dying as the life I thought I was going to have sails further over the horizon without me. The real failure is that I’m not always strong enough to hide it from those I love. And sometimes they know it.
By now you’ll notice, I didn’t say a thing about the kids. There’s more to tell though.
I’d tell them that I let my wife down every day. And she does me. We fight. We blame. We keep score. She’s better with the kids. Worse with me. We try so damn hard to get it right it hurts. And it’s still not enough. It’s too hard. Our life is too damn hard. Someone is always tired. Someone is always on their last nerve. And if we’re not, we’re pointing out that the other is. We get it wrong so miserably and so often it’s a wonder we even get to do it anymore. It feels like I’m worse, but that’s probably just the view from my seats. And it’s exhausting. Emotionally. Physically. Spiritually.
But I’d tell them one more thing. I’d tell them we’re still here. And then I’d tell them why.
It’s not because we don’t have a choice. People bail on this journey all the time. Either literally where someone just quits and runs. Or figuratively where someone crawls into a hole and dies and stops fighting. We’re still here. Because of one simple truth. Our lives run on the free and unmerited favor of each other. We get by on the divine gift to feel worthy things about the unworthy. It’s what God shows us. It’s grace. We’re still here because we’re gracists.
No one is good at this. If they tell you they are, they’re selling something. What we’re good at, is each other. Not the way people pretend they are when they’re in public. Where they don’t fight and they have productive conflict and every word is kind and considerate. We’re good the way that we’re bullet proof against how much we get it wrong. Because when we do, we forgive quickly. And we do what we can when we can for each other. Because the only thing left over when you love someone that hard, the way that my faith teaches me that my God loves me, is grace.
The truth is, I’d tell any couple the same thing. We’re not much different from anyone else. We’re all hanging by a thread. Every one of us, autism or not. The only difference is I get hit in the face with it every morning when I walk in my son’s room to see if I need to change his sheets. I know I’m in a fight. But something happens when you stay in the fight long enough. You learn how to survive. And the only chance any of us ever really have is to be a gracist.
Care For Us is a 501(c)3 exempt non-profit organization that provides free therapeutic services to family members of special needs children and adults in San Diego County. To support us through donations, click here.