Everyday Autism Life
Hi, my name is Carrie.
I have five kids and my second son, Jack, has autism.
Time is a curious thing. It compresses, and expands. And when it comes to keeping a teenage boy with autism busy at the end of June, it stands still altogether.
I wake up every morning mapping out possibilities. A few chores—pulling twenty weeds, emptying the dishwasher, that sort of thing.
Then, bigger activities like a trip to the pool, or a short hike. I know he will whine and scream and stomp around, because that is how my boy of no works. He must reject, before he can enjoy. I have to talk him into everything that might be fun, or interesting, or the slightest bit active.
I mean, I am trying to keep him moving because he loves pancakes and chicken fingers more than he likes riding a bike and, from the looks of things, I am going to be responsible for his BMI and cholesterol for the rest of my life. Sweet baby Jesus in the manger, take the wheel.
His last doctor’s appointment went like this:
Doctor: So, Jack, what do you do to stay physically active?
Jack: I do not want. To BULK UP.
Doctor: Okay, but—
Jack: Too much exercise. Is not GOOD. For you.
Doctor:
Jack: Will you check. If I have TESTICULAR CANCER.
Although closely tied to seasons and holidays, the actual weather means little to him. Yes, he checks the forecast constantly, but he’s happy to stay in on a beautiful day and watch a movie, or bake cookies during a heat wave.
It might be easy to assume at some point, you get used to your child’s autism. You live with it and it no longer surprises or hurts you. You make peace with the things that may never be.
This is not the case. Not for me, anyway.
We spend an enormous amount of time together, my boy and I.
You would think we have long, deep conversations with all of this time. But we don’t. Instead, we are like two court reporters, exchanging facts about the weather, the plan for dinner, and occasionally, our taste in music.
It has the cadence and texture of conversation, with little emotional connection.
Please, I want to say, talk to me.
I mean, it’s not like he’s complaining. Not at all. He is perfectly content to sit home on a summer afternoon and count his DVD’s, or check e-mail a bunch of times to confirm his weekly dishwashing shift.
This hurts like—what? What does it hurt like? There is no metaphor for the small, bearable heartache of every day autism life.
Because yes, it is bearable. It’s not as though I burst into tears every time I see the DVD cases on the floor, or I bang my fists on the desk when I find the scheduling program open on my computer.
But is it so wrong to wish he had the same social interactions as the rest of my kids?
Is it so wrong to want more for him?
Maybe.
Yes.
I don’t know.
What am I chasing, exactly?
He doesn’t have a single friend.
When I was a kid, all I wanted was a bunch of friends. I wanted to write notes with a purple pen and go on sleepovers and sit shoulder-to-shoulder in movie theaters.
But I was tall, and awkward, and occasionally lonely.
He is tall, and awkward, but is he lonely? It’s hard to say.
That’s the thing about our own insecurities. It’s best to stay on speaking terms with them, or they might show up at the door uninvited, and try to splash watery doubt all over the floor.
He doesn’t want what I want. This is okay. It has to be okay.
Please. Tell me what you’re thinking.
He sleeps later these day—sometimes even past 7:00 am But I am still stuck in our pre-dawn ritual, my own circadian rhythm altered to that of an early-riser.
I lie awake and watch the sun break across the trees. I think about the other ways in which I may be stuck.
What’s wrong with me?
He is sixteen years old.
After years of pushing and therapies and services, why can’t I just let him be?
Why does everything have to be a fight?
I never know the right thing to do. I am lost. I live in autism’s country, and I cannot find the map.
I am lost and I am sorry and I am trying.
I am tired.
But I can’t stop ever stop pushing. Autism is a 365-day, lifelong, what? Commitment? Responsibility? Adventure?
The point is, I can’t let him be any more than you can leave a plant in the sun without water.
I have to give him a chance to blossom—in his own way, yes, and on a different timeline than many—but I cannot deny him the flourish.
He surprises me every single day.
He changed my life.
Mom. When you talk I can see. Your voice with my eyes.
.
June 29, 2020 @ 3:20 pm
You are a great mother, you are meant to worry and push your children. I cannot speak for Jack, but I do not think he is lonely. You have built a wonderful family around him. At the end of the day family trumps friends. Sometimes our family becomes our friends. I think Jack Is content… if so That is wonderful.
June 30, 2020 @ 3:12 pm
Wow. Very compelling. I love your writing. I don’t see how you do it with five kids. I only have two.
I grew up in a family of six. There were four of us kids. Then my dad left. There was five of us. We were super close. My mother went to work from 3PM until Midnight. We rarely saw her. I was 14. We had many chores. My siblings and I would sing, dance, play and have the best time together with no parents at home. We thrived.
Jack probably loves routine. He has a schedule and rules and will have a different way of thinking than your other kids. I appreciate what my son Andrew has brought to our family. Andrew is 26 now. I will reflect on how my husband and I raised him to give you a perspective.
We kept him busy. I drove him to music lessons, church choir practice, taekwondo, boy scouts (although my husband became very involved and took him much of the time), track competitions, swim team events, piano lessons and tutor appointments. He wanted to spend time alone in his room to play video games. He didn’t ask questions. He followed the rules. He never lied. He never got in trouble.
In grammar school, he had 3 friends. They were similar to him probably also diagnosed with Autism or Aspergers. We had play dates to help him learn how to socialize. He was my project. My husband wrote a book called “Andrewtism” to help him cope.
The only arguments my husband and I had involved decisions about Andrew. Our older son Curtis was also a handful having ADHD, but he was out of the house in college by then since they are 8 years apart.
In High School, Andrew met up with Mormon friends, choir friends, drama friends and had a lovely time. He needed help with homework especially writing and math which we helped him through. His Eagle Project was challenging and my husband mentored him as well as many other boys.
In college, Andrew joined the choir and got a scholarship. He had many friends. He got through college eventually. Took him 6 years and a lot of guidance from us and his mentor and professors. He began to lie which was hard. He would fall apart and sleep through his finals and fail a class. It was difficult. He had to move back home. That was hard for him and us.
Jack will be okay.
Take it one day at a time.
These days go by fast. Pretty soon you will be an empty nester. You will. Then you will miss them. Enjoy the moment Mamma.
Teri