First off, I seem to get a subscriber here and there, and it’s quite nice, because why write if no one reads it? But if I’m honest, it also makes me nervous (and why I don’t actually tell people that I’m doing this…yet). I’ve worked professionally as a writer and editor, but the idea of writing about vulnerable things and painful things and controversial things where just anyone can get it? Well, what a fascinating and quite terrifying thought!
What I say about our autism/medical/neurological experience and my observations about this whole world might not resonate with everyone, and may offend some. I usually just write this stuff for myself—to vent, or even remind myself that I have my own brain. Even if it feels like mush some days. (And I haven’t done much longer-form writing in a while. Hopefully it’ll get easier and the thoughts will connect nicer over time.)
But maybe the time for hiding in a corner of the internet with like-minded people who pass around ideas has passed. Because it’s possible – just possible – there are a lot more people out there who are waking up and shaking off the dust of complacency.
It will probably take more of us to recognize the suffering of our kids today. And fight for them. But not just for them, but for future children. You know the messaging by heart now…if we don’t care for our environment now, our grandchildren will pay the price. But sub in health for environment (although they are intricately mixed), and you have a pretty stark warning.
Side note: Dr. Toby Rogers wrote his dissertation about the “economy of autism,” and you should absolutely check it out.
Anyhow, I’m going to try my best to organize my thoughts and storytelling into categories, and so Autism Chronicles will be where I tell my boys’ stories. I’ll call them W and L, just to avoid using their names a bunch. Those really are their initials, so I’m not hiding anything. But I do want to treat them and their journeys with a lot of respect, because God willing, they’ll be able to read this one day, and I want them to know I have kept their dignity intact.
W is my second child and first son. I have sat down to write about the “beginning” of all of this many times recently, and I can’t seem to capture what the “beginning” really is.
I’ve written about it before, calling his diagnosis the “day that changed everything.” Well, it did change everything. But also it didn’t.
It seems like a lot of autistic children have a handful of behaviors that just jump out. The lack of functional speech being a big, but not universal, one. So it’s logical to consider the fact that W never developed what you’d call functional speech when he was supposed to. For a while, we thought “duck” was his first word. Turns out it was a gibberish sound he would make, but who knew?
I would note his lack of speech many times in concern, and was told by well-meaning people that, oh, they develop speech when they need to. Or, oh, I didn’t speak much until I was four. And so on. And I would shake my head and think, this isn’t just not speaking. That suggests an ability you just don’t want to use. (My daughter was kind of like this.) But W’s word silence was deafening.
So, sure. Lack of speech was where it started. It’s textbook. If there was such a thing.
But.
There’s always a but, right?
I had an experience with W when he was a baby that I have often thought about, especially in more recent, rougher years. And I think it is really our In the Beginning moment, more so than anything else.
He was a teeny, tiny little baby. Maybe three or four weeks old. Still really sleepy a lot of the time.
I remember everything about this moment, because it is burned into my mind.
I had laid him down on a big, squashy chair, all swaddled, cozy, and sleepy. I was kneeling next to him when I leaned down to kiss his forehead. He looked up at me, very clearly, and held my gaze for a few seconds.
In those seconds, I had a very real jolt of recognition. So much so that it knocked the wind out of me, and I even whispered out loud, “I KNOW you.”
The soul that resides in this child sent me a message in that moment. I have thought about it in different ways over the years, both complex and simple, and sometimes simple is best. He was telling me that beyond time and space, we already knew each other. And he needed me to remember.
I would consider myself a deeply religious person (with varying degrees of personal spirituality), so I didn’t really struggle to make sense of it. I just knew. The full weight of it, of course, I didn’t know. And I think I’m only starting to get a glimpse of it even now.
And why would that moment be so important?
Because as the years went on, and continue to do so, it’s important for me to remember that as we encounter challenge after challenge with W’s malfunctioning body and mind, the highs and lows of breakthroughs and darkness, there is a soul inside his body that is well, whole, and perfect. And I KNOW that person.
And that perhaps In the Beginning, it wasn’t just that there were no words, but that there are levels of communication that don’t require words.
And as someone who rather enjoys words, that is actually quite remarkable.
>so Autism Chronicles will be where I tell my boys’ stories.
Hm, I should have called my blog that lol
I’ve been enjoying reading what you’re sharing. Just out of curiosity I’ve heard parents say that their child was developing normal milestones until a certain event and then regression began to occur. Was this not the case in your situation?