Editor’s note: I wrote this blog based on my son’s diagnosis on paper, and the color he brings to everyday life.
Imagine I took away your memory.
Not your memory, exactly. You could still remember things like the time you got stung by a bee, and how your family always ate hotdogs in the summer.
But the memory to hold things in your brain.
Picture your brain is a big filing cabinet with lots of drawers. Inside you keep notes, like how the recipe for your favorite chocolate chip cookies says you need two eggs.
The filing cabinet is your working memory. It is where you hold stuff you might not need at the moment, but you want to look at later.
Imagine you had a hard time finding words. That you had something important to say, but the letters and the sentences would not come to you fast enough.
Imagine your body felt like it was crawling with invisible ants all the time, and you had no choice but to jump up and shake them from your skin.
Imagine all day long, you waited, breathless, nervous, scared, for a loud noise you did not expect—a fire drill, or a siren in the street, or door slamming because of wind.
Imagine what it is like to be me.
My name is Jack.
I am fourteen years old.
I have autism.
I have anxiety.
I have something called amblyopia, which you say like this: am-bly-OH-pia.
This means my left eye is very lazy and my right eye does all the work. My left eye turns outside a little but because my brain doesn’t need to use it anymore.
My lazy eye is not from my autism. Lots of people have it. But for years and years nobody knew about mine because I never did the test very good. I never sat still in the chair and I couldn’t always answer all the questions, so it got worse.
My mother cried the day we found out. That my left eye was so lazy. She held my hand in the parking lot and squeezed my fingers and then we went to Bertucci’s for lunch because she promised.
It was too late to fix. My eye. We tried with the patch and I cried and screamed and my mother set the timer on the stove, but in the end it didn’t help much.
Imagine you had to take long car rides into cities for many appointments with different doctors. You had to try and play silly games even though they didn’t makes sense, and color inside boxes, and stack tall blocks in what they call a pattern while everyone watches you with their eyes and keeps their breath inside their bodies.
Then the doctor and your mother and your father huddle quiet-like in the corner to talk with whisper-words.
Yes, fourteen, but testing closer to eight emotionally.
I do see he’s a little more anxious than last time.
Okay, we’ll up the dosage but sometimes suicidal thoughts can be a side effect, so watch for it.
Emotionally anxious autism watch for it.
I don’t hear every word because my hearing is different. In my ears, everything sounds the same—the doctor talking next to me in a small room and the man on his cell phone outside the door and the car pulling into the parking lot. It is all equal.
Imagine you have no working memory, and you had to check and re-check the same recipe you’ve made a bunch of times to see how many eggs you need.
Imagine what its like to feel different every day of your life.
Sit back in your chair for one second. Feel the tiny ants across your arms and your legs. Try your hardest not to shake them off by hopping around the room.
Now close your eyes and imagine you are sitting in the classroom and your teacher is doing lots of talking, but just outside the window there is a bird who is singing. This bird is singing even though there is snow on the ground and coldness in the air.
Your teacher and his voice and the bird and his song are exactly the same in your ear. You cannot tell the difference. Your teacher says please pay attention,but you can’t. Because you only hear music in the snow.
Imagine you have autism, and how different your life would be.
No big wedding with dancing and presents.
No little babies swaddled in tight blankets, or graduation parties, or long career with a big paycheck.
No first apartment, with your favorite blanket on the back of the couch and cups in the sink and green plants in the window because you love plants and it is all yours, just yours.
Nothing is all mine.
Autism and anxiety and am-bly-OH-pia follow me around all day long—uninvited guests at a party.
Don’t feel bad though. This is not what I mean.
I mean do it all. The weddings and the happiness and the tiny baby fingers curled together.
Take nothing for granted. Enjoy every white-frosting-on-a-cake minute.
Do it for me.
Do it instead of me.
Even better, do it because of me.
If you get a chance, stop what you are doing, listen to a bird sing.
For it is rare, and surprising, and beautiful. It is worth hearing.