Two Races
Parenting is a marathon, not a sprint.
There are a lot of different articles out there that address this statement. And if you say something like this in a room full of parents you will get a lot of knowing nods. That is mainly because it's true.
Parenting is a marathon because it requires patience, endurance, and a willingness to endure monotony and pain. It requires strategy and support and people cheering you on. And it requires water stations, because everything is easier when you are hydrated. All that stuff is true.
And when you have a kid with autism it is only half the story.
Autism complicates even the most basic things. Imagine a marathon where you are attacked by bees randomly. That's kind of what it's like.
I was asked the other day what it was like to have two kids with autism. I thought about it a lot, and I thought about the whole marathon comparison. And I - please forgive me for this - decided to "run" with it.
Having two kids with autism is like running two marathons. Only not normal marathons. Ultramarathons. Because our boys with autism will never be "grown" in the same way our typical kids are. It's not a 26 mile race. It is way, way longer. And it's not even a run on a road. I get it, the Boston Marathon is hard. But it's not HARD. Parenting is a lot. Parenting a kid with autism makes "a lot" look like a Sunday stroll with an ice cream cone.
But parenting two boys with autism is more than running two ultramarathons. It is running two radically different ultramarathons. Two races that require a different skillset, a different mindset, a different relationship to yourself and the world. Two races that demand everything and yield nothing. Two races that can legitimately hurt you.
Over the next two weeks I will be talking about what it is like - really like - to raise two kids with autism. I will be talking about the two races that have to be run. I will talk about Willie and about Justin. I will share some of our challenges, and some of our joys.
And yes, I will talk about how hard raising a kid with autism can be.
People have told me - an annoying amount actually - that "special people are called to raise special children." And yeah. Maybe. Only, I'm not special. Most of the autism parents I know aren't special. Don't get me wrong, it is hands down one of the most amazing, ass-kicking groups of people I have ever had the pleasure to know, but we aren't that way because we just naturally kick ass. We are that way because raising our kids taught us how to kick ass, because not kicking ass meant not taking care of our kid. Not kicking ass meant they would be bullied, denied access, pushed to the side, and forgotten. Kicking ass was a way to show them how much we loved them. And sometimes it was the only way. You ever try to hug a kid who hates to be touched?
Special kids demand a special kind of parenting. If autism parents are special it is because we held a winning ticket in this profoundly messed up lottery. And while every autism parent I know would die for their child, I am equally sure that we would all happily give up our winning ticket if we were given a chance.
I would happily give up the autism in both of them.
Don't get me wrong, autism makes both Willie and Justin exceptional people. They are both able to do and see things that most people just don't see. They have insight, care, and even joys that elude most of us. They both laugh - big, hearty, belly laughs - at things that appear only to them. Justin spontaneously sings. William vocalizes and has the ability to look deeply.
And.
They both get frustrated. In Willie's case, violently so. They both lack the ability to filter noise and light. They are easily overwhelmed and overstimulated. They both get emotional. They are both rigid and resistant to change.
Justin can talk, and he understands feelings. But that means he says "I'm sorry" a lot, and he also understands when people don't want to play with him.
Willie can't talk, and that means he is forever trapped in his own head. He can't tell us what he knows and what he doesn't. He can't tell us how he feels.
It has been a challenge navigating these races. And there has also been joy and hope and light. For us as parents, yes. And I truly hope for them as well. But, as with many things, it is hard to know.
Part One, about Willie, will come next Tuesday, Part Two (Justin) comes the week after that. I hope you will read both.
If you aren't a subscriber, now would be a great time to start. I can't do this without the support I receive from readers. I am grateful for you all. Thank you so much.
Have a great week everyone. Be well.
And no matter what, keep pounding the rock.
Amen!