My name is Carrie.
I have five kids, and my second son is diagnosed with autism.
His name is Jack. He is fifteen.
Most people assume I have made peace with the whole autism thing by now.
It’s a bumpy road and sometimes I yell and sometimes he lines up Tide Pods in the hallway and this is autism and this is our life and, for the most part, it is good.
Yes, I am at peace with the diagnosis. I am at peace with it because I know it’s right and it fits him like a glove and at the exact same time it is who he is, and not who he is.
But every once in a while, I experience a moment of grief.
Grief us the weirdest thing, isn’t it? It’s not linear. It’s not logical. For me, it’s like a staccato beat amidst life’s music—loud, sharp, and unexpected.
I never really know when it will hit me. A lot of times, it’s when I read through paperwork. See, on paper, my son is very black and white.
Limited working memory.
Struggles to keep his body regulated.
Suffers from depression.
I read all about my paper boy and his challenges and the drum rings in my ear and then it spreads through my ribcage and vibrates in my bones.
When you have a baby, you lean close to their pink seashell ear, and you stroke it softly. You are full of wonder. You don’t know who they are, or who they may become. This is a beautiful thing.
I felt this way about all my children when they were born. I felt this way about Jack.
Then autism got in the way of all that and then I saw him for exactly who he would become: a 20-something sitting on an old plaid couch in my basement playing video games.
Kidding! I kid! I am just kidding.
I am kidding.
Is there one day when you realize the whole dream is over?
No. Not for me, at least.
I’ve said it before and I will say it again—autism is death by a thousand paper cuts. Tiny little slivers of pain, when I just wish someone would stab me already.
Kidding again! Just kidding.
But maybe one big heartbreak would be easier on all of us, you know? If I could know what this all looks like in the end, I could adjust my day-to-day expectations accordingly and stop pushing him so hard and hating myself for pushing him and sleeping my restless sleep.
I guess what I’m saying is, I have never quite give up longing for that crystal ball. You know, the one that would predict what kind of third-grader, or teenager, or man my son may one day become.
In spite of all the things I am saying here, I don’t live in grief’s space all the time. I really don’t.
The other day a woman asked me if Jack will be independent. She commented about how well he’s doing, that she bets he’ll be fine, just fine. Maybe not living across the country from us, but perhaps a small apartment of his own here in town?
Right away my brain flashed to that scenario. Jack, in a cute little condo that I helped him furnish and keep stocked with his favorite cereal. Every month, I write out a careful check for the mortgage.
Yes, he can cook for himself.
Yes, he can do his own laundry.
He can change a shower curtain and make sure we have enough toilet paper and scramble eggs for breakfast.
But if the smoke alarm went off because the pan got too hot, he would cover his ears, and scream. And if the fire department couldn’t get there in time he would stand still in front of the stove as the flames spread and burned through the ceiling and the walls collapsed and he would die.
That is very real. This is actually possible.
When I think about the pan and the flames and the ceiling, I have to remind myself that’s Jack now, at age fifteen. Jack at age twenty-five may look a lot different. A decade could mean a world of difference.
Or it might not.
I imagine some people are like, okay, he has autism, get over it already! He’s fifteen! It’s time to move on now!
And those people are right. Absolutely.
At the same time, I want to ask them to let me have this already. Let me have the drumbeat and the crystal ball and the sadness.
Let me feel the punch in my stomach when I shake medicine into his upturned palm, and when I hear the fire alarm ringing.
If I can have the grief, I can also have the light. I can hear his music.
Jack is engaging with his peers more and more every day.
I love him.
I know I should be over it by now, but I can’t get over it.
I am not over it. I mean, most of the time I am but then I see a boy his age bouncing a ball outside of the gym and the drums start up again and I think what if and then I think don’t think that way it is what it is.
It is what it is.
You never get over something that evolves and changes on a daily basis.
We don’t even have a plaid couch.
He makes the best scrambled eggs. He adds a lot of cheese, and a little salt.