Chapter One...

Last year I started working on my next book. It’s a story about my journey as a special needs dad. For Autism Awareness Day, I thought I’d share the first chapter for three reasons:

1. I think people on a similar journey might find it helpful.

2. I’m putting myself on the record that it’s in the works so I don’t wander off the task of finishing it.

3. I’m getting close to the point where it’s time to make considerations for publishing it…and well…I thought I’d throw it out there to see who’s interested…

1. Aidan

Aidan is pacing. He steps back and forth to a rhythm only he can hear. Or more like feel. Songs escape. He’s singing the Lion King. And then on to something I think is from the 30 minute addon that comes after The Grinch Who Stole Christmas DVD. We haven’t had a DVD player in years. The words are rarely right but the pitch and pace are always perfect. He’s holding an Amazon Firestick remote in his right hand. He’s watching Emmet Otter’s Jug Band Christmas. He’s rewinding the part of the talent show with the flying squirrels and has been for the last 30 minutes. In his left hand he’s holding the white plastic hanger that anchors him to our world. He waves it as he paces. It’s 5:30 in the morning on Saturday. Aidan’s been at it since four.

If you’ve never seen him in his element before, it can be unsettling. It’s loud and sometimes Aidan sounds like he’s in distress. He’s not though. This is how he rests. Sitting on the couch quietly and watching something is distress. He needs motion. The rhythms inside of him need to come out. And so they do. He spends his time outside the home trying to keep it together. He has a sense of discretion. But when he’s home, he lounges. Aidan lounging is fantastical movements and sounds and scripts of movies watched on loop or recalled from the far corners of a uniquely different mind. This morning, he is in form.

In the beginning, the thought of sitting here and writing, a few feet away from the commotion, was unimaginable for me. To exist outside of my son’s world and watch him from across an unsolvable abyss was a sort of trauma. Every second with him triggered a feverish urge to fix him. Or at least to get him to stop whatever it was he was doing. We’ve been at this a long time now though. It’s been 14 years since his diagnosis. We’ve learned some things. Like he’s not likely to stop. And it’s not likely Aidan’s world and our world will ever become one. But we’ve also learned we can exist in each other’s world together if we close the distance between the two. Closing the distance is neither fixing nor stopping him. Sometimes it’s just letting him go and being with him. And in that realization we see that’s true of every relationship we’re ever going to have. This normalization is the foundation for which we’ve built our life with Aidan. 

Aidan Riley Hughes is 17 years old. He is the second born of my three sons. He was diagnosed with moderate to severe autism just before his third birthday. The “moderate to severe” label is too broad a distinction to have much meaning. The impact on him isn’t moderate. It’s near complete. And the autism itself isn’t really the culprit. It’s a downstream behavioral outcome of an upstream neurological difference. His brain doesn’t work the way yours and mine does. And the outcome is a cocktail of behaviors that aren’t like yours and mine. He has no conversational speech. He scripts things he’s heard and can express direct needs. But we’ve never had a discussion and it’s possible we never will. He has high spatial and kinesthetic intelligence. He can figure out complicated things like puzzles and patterns. He never (literally never) loses his sense of where he is or how to get from one place to another. He’s affectionate and cares deeply that his family is around him and doing the things he’s used to them doing. But we don’t really know how much intellectual capability Aidan has. I’m pretty sure it’s not as much as it should be. Or at least it’s not shaped the same as most others. I don’t have a sense that there’s some completely intellectually typical Aidan existing deep down inside a barrier of sensory blockers screaming to get out. But I’m also not sure which side of hope is nudging that belief. He could be in there somewhere screaming to get out. Or he could never have existed. And that would be horrible too. Neither of those extremes feel good to me.

Aidan has no physical presentations of disability. He’s as aesthetically perfect as a 17 year old boy can be. As he was as a 12 year old. As he was as a six year old. Or a three year old. He has my mother’s big brown eyes and his mother’s dark complexion. He has my nose and broad shoulders. And a smile you can feel. He’s a beautiful boy. I say that with less pride than a sense of trepidation. No one expects Aidan to have a disability when they come upon him. If he’s decided to go off on his own and elope, as he does, no one will think to help him. If you meet him, you might expect him to engage you in a conversation about his favorite Youtouber. But he won’t. And if he leaves the house on his own, whether or not he comes back is a variable we’ve lived with as long as he was old enough to reach the door knob. One day soon he will be a full grown man. And no one will think to help him. They will think to defend themselves as they do the rambling madman on the corner.  It’s a rabbit hole I can’t really bring myself to tumble down too far without knocking me off the healthy mental path I’ve learned I need to stay on in order to keep this thing together. The thing is the life we’re  going to live together for the next 50 years or so. 

We’ve built our own map of how Aidan works. We’ve worked to bend it towards something closer to manageable in a world that’s been built to cater to how the rest of us work. And through those efforts the abyss between us has shrunk a bit. But there are things that seem to be fixed; his lack of speech; his lower cognitive processing speed; his inability to display intellectual expression. There are also things that are slowly getting better over time that once resembled tremendous barriers. He was a constant flight risk that created a permanent urgency to ask every few minutes of our life “where’s Aidan?” His pica, a compulsion to eat non-food items, made it so that we couldn’t have anything that fit in his mouth laying around. His inability to sleep led to what seems like years of my life laying on his floor in the dark because he simply wouldn’t lay in bed long enough to drift off. These challenges are mostly behind us now. We’ve learned to acknowledge the trauma they caused on our family for over a decade. And we’re learning to come to terms with a reality where the existence of our child represents past trauma. Our home is still filled with relics of harder times. We have high definition cameras over every inch of our house and yard where Aidan might be found. We have combination locks that face inward on our doors. And we still keep dangerous chemicals or tools locked up like we have a toddler. One day we might feel safe enough to not need them. But I’m not sure. The future is uncertain, as it is for everyone. There’s an extra layer of mystery for us though. 

At the core of the mystery is that we really don’t know what’s wrong with Aidan. While I’m aware of the stigma of disability and well meaning advocates that don’t like the term wrong, I can’t avoid using it. There is something different about my son that keeps him from growing and living the way that’s required for him to one day leave the protection of his parents. Something that will keep him relying on someone else for the most basic of his needs until he no longer has them; until he dies. His progress is something to celebrate. His Autism is not. There is something wrong with him. And we don’t know what. We’ve had genetic testing and brain scans and blood work and metabolic tests. We’ve done psychological and aptitude tests. His genes are mostly normal. Or at least as normal as anyone’s. His brain structure is normal. He has no diagnosed illnesses. His health history has nothing remarkable. Medical doctors are limited by process, liability and imagination in telling us what it might be. Modern health shamans tell us it’s everything. And so we’re left to wander in the dark for a cause. It’s a crusade that has less and less utility as he gets older. 

As the years pass, the ability to change Aidan dramatically decreases. Every grain of sand through the hourglass piles up on top of what life a neurotypical Aidan might have had. We live on a cruel razor’s edge; guilt that we have not fixed him on one side and the abandonment of hope that would be true if we never would have or never will on the other. There are no stories that we’re aware of that show a seventeen year old of Aidan’s ability level transform into a fully independent adult. The victory stories all started far younger than he is. We’ve known families that we’ve met along the way whose children were deeply impacted as toddlers and preschoolers but have entirely “grown out” of the problem. Some of them did nearly none of the work that we have. Some of them believe that doing nothing and just letting things play out was why their child thrived. It’s hard not to harbor some resentment. But that’s just one of the many boulders this life has taught us just to stop carrying.

One day progress in medical science and technology may tell us what’s wrong with our boy. And why it happened. And how we could have prevented it. Or even how we can fix him. I’m skeptical though. Much of the brain is still a black box. But I’ve never wanted to be wrong about something more in my life. The most likely outcome is that we’ll just never know. And that’s another boulder we’ve learned to put down. We live in a world of gratitude for what is instead of what isn’t. A world where celebrating the wins is mandatory. Where the fine edges of ourselves have long since broken off. Nothing fragile lasts long here. But, despite it all, we are happy. And saying that honestly is something. 

I start this story with Aidan. Aidan is not the story though. Aidan is the destination. The journey to get to him, fully intact, safe in my home of sound mind and body as most of my family dreams peacefully in their beds this morning, is the story I’m compelled to tell. It’s a story of adventure and war and love. It’s a story of far off places you need to see to believe. It’s a story of fathers and sons and mothers and death. Of heartbreak and failure. And of triumph. Of things already in history books witnessed by ordinary people in ways that one day will be lost to time if I don’t write them down. If the next 45 years of my life is going to be about Aidan, then the first 45 was about getting to him. This is the hero’s journey. Not because I believe I’m a hero. But because Aidan needs a hero. And I’m who he’s got.