We Are Okay
Right away, I want you to know something about me. I want you to know I was supposed to have normal kids who did normal things and raise a normal family and have normal, happy times.
I have none of that.
Well, I have some of that, but not nearly as much as I imagined.
My name is Carrie.
I have four boys and one girl.
I am married to a man named Joe. He is a dentist.
My second son, Jack, has autism. He is fifteen years old. If you ask him he will tell you he is fifteen years, three months, and 16 days old.
When you are raising a kiddo with special needs, there are certain accommodations you didn’t quite expect to make.
We have to take our kids into the bathroom with us.
We eye the doors for exit signs, in case we have to make a fast escape.
We hold their hands, no matter how old they are.
Do I wish it was different?
Maybe.
Sometimes.
Between the bathroom and the escapes, sometimes people stare at us.
It’s fine. I’m used to it.
I guess I got used to it the day 3-year old Jack dropped an entire jar of spaghetti sauce in the grocery store and it shattered everywhere and there was red splattered all over my legs and the floor.
People stared.
I got used it a little more when he filled an entire cart in Target with hemorrhoid cream while I was catching up with an old neighbor of mine.
It’s amazing the things that can happened when you are simply trying to have a conversation about t-ball practice and the price of strawberries.
Now, people mostly stare when they see us holding hands. I get it, I really do. It’s kind of unusual to see a teenage boy holding his mother’s hand on the sidewalk.
The thing is, I don’t mind. I’m serious. I am not being sarcastic.
Look.
Watch.
See us.
See him.
Let’s all acknowledge this thing called autism, because if we acknowledge it, maybe we can truly accept it.
All I have ever wanted was for people to accept it.
It’s not going anywhere.
Autism is here to stay because it is a genetic disorder that affects a large number of our population.
Fifteen years old, and he still holds my hand.
His fingers are longer than mine.
They are as familiar to me as my own heartbeat.
I don’t know why he does this. We’ve never talked about it
Oh, sure, we talk about everything else. We talk about pizza and tornadoes and which movie has the best ratings on Rotten Tomatoes, but those are merely details. Like a deep-sea diver without enough oxygen, I cannot get below the surface.
A lot of people ask me what it’s like to raise a child like Jack.
I guess it’s the same as raising any other child. I worry about how many vegetables he eats or if he has too much screen time or whether I should make him read more before bed.
I also worry about who will take care of him when I die, and if he will ever understand the concept that a bank holds the money in your account so you can write checks. You know, that sort of thing
So, maybe not the same.
I don’t even know what’s the same anymore.
I think if there is anything I want people to know about me and autism and my son named Jack, it’s that I love him.
I love him for exactly who he is, even when it seems like all I am trying to do is change him.
I don’t think he is broken, if that’s what you’re wondering.
I just think the outside world doesn’t always match what he needs on the inside, if that makes sense.
How can I explain it? It’s as if you want some orange juice, but every single person around you insists you have apple juice.
You try to tell everyone that you do not care for apple juice. It is the wrong color. It makes you gag. You cannot possibly drink it.
But the all the people in all the land still told you to drink the apple juice because everyone drinks apple juice and if you don’t drink apple juice you are weird and something is wrong.
He longs for orange, while the world around him craves red.
So my job is to tell everyone, hey, it’s okay to like orange juice. It’s no big deal.
After I say that I have to turn to my son and say, hey, it’s okay if you don’t like apple juice. Just say, no thank you, I prefer orange juice. There is no need to scream and cover your ears and get upset.
But what I am really telling him is, listen buddy, you are safe here. You are safe in your choices and you are safe in your discomfort and it’s all going to be okay.
I am asking him and the world around him to sit still for a moment, and appreciate one another’s color.
My son Jack has autism.
Is this wrong?
I don’t know.
I cannot say.
He holds my hand.
He is six-foot-two and he holds my hand and he holds his father’s hand and sometimes, he holds his older brother’s hand.
Is this wrong?
I don’t know.
I cannot say.
If there is one thing I could tell everyone about me and autism and my son named Jack, it’s that everything will be okay.
We are going to be okay.
Please, see him.
Make room for him.
Sara
August 26, 2019 @ 9:58 am
Thank you for this beautiful post.
My spectrum kiddo is 13 and I still hold his hand. I hope I can hold his hand for years to come. The way I understand it is this: The world is so unpredictable and has so many questions for him that it is one small thing he can be sure of, even if he can’t articulate it. The comfort, the guidance, the familiarity ease his nerves and body and mind just enough to be a little more free to be himself in that moment.
Claudia
August 26, 2019 @ 7:52 pm
when I was considered an adult, before I had kids, I still didn’t know the difference between autism, aspergers, or even dyslexia! I am embarrassed to admit this. But I didn’t know anyone who could explain this or even to ask. This blog is so necessary and important to educate people.! It should be required reading in so many venues!
Kelly
August 27, 2019 @ 9:26 am
Can you please link some clinical studies showing autism is genetic?
chirpandflutter
August 30, 2019 @ 11:05 am
I understand the feelings.