Editor’s note: I wrote this piece after a few conversations with my 16-year old son, Jack. I think he is very, very brave.
Last Thursday I went to get checked up at the eye doctor.
My left eye doesn’t work right. My mother says it doesn’t like to do its job and it is lazy. The doctor calls it amblyopia. This rhymes with cornucopia.
Last time I saw this doctor was November 5th, 2019. It was a Tuesday. I got new glasses, and we made a plan for I was to put drops in my good eye and put a patch over it. This would make my lazy eye learn to see better.
I wore a patch before. When I was in fourth grade. I hated it. I screamed. I cried.
This time felt different. The doctor’s voice was a song of promises, so I agreed.
I made a schedule that was like this. I put the drops in at night and by morning the middle of my good eye grew round and everything was fuzzy and soft. After school at 3:45, I put on my patch. I wore it for two hours every day. I never skipped.
Last Thursday I could not see any of the letters during the checking up. They were big blurriness on the screen. My mother and the doctor said words between them about how the lenses in my new glasses were switched in something called a lab. The right in the left and the left in the right and this was wrong.
I listened careful-like. But the musical promise was gone. I thought about all the times my head hurt with an ache since last November.
My mother told the doctor this was very upsetting and she had rocks in her voice.
In the car she stayed quiet. I stayed quiet too. Her eyes were shiny.
When we got home she stood next to my father. He hugged her for some minutes and then he said something in a whisper and she still had her rock-voice and she told him he didn’t need to fix this.
My father likes to fix things. If he isn’t fixing the tractor or the ice machine or light bulbs with no light left, he is telling you about it with instructions. He likes me to know what is in his head. He likes me to know how to do good work.
I want to know when things are going to happen, and how.
I want to know if we will have Remote Learning in the fall. Or go back to school.
My mother says we can’t call it homeschooling because the teachers are helping us. They meet on the computer and even give quizzes.
She is glad because she says she is not smart enough for homeschooling anyway. I told her she is right. Because she doesn’t seem to know much about my autism.
I want the answers. I want to be in charge. When I am not, I feel anxious like there is a big snowstorm in my body.
Maybe you feel this, too. Even if there is no autism for you.
Maybe the pandemic and COVID-19 is scary awful but you love being with your family when there is nowhere to go.
Maybe you heard about the new plan for school this year and you feel angry mad sad nervous.
Maybe you cannot decide what is right. For you to do.
It is okay to feel more than one thing at a time. I do. I feel a lot at once. Sometimes I can’t sort it all out so I lump it together into red anger.
The doctor said there was no change. In my lazy eye. The drops and the patch did not help. For these months I thought if I followed my schedule and did the hard work it would be better.
I asked my mother. If my dad can fix my eye. Because he fixes so many things. She smiled but it was only her mouth and not her whole face and eyes. She said no.
I asked my mother if it was fair that my glasses were wrong. That I had many headaches for all those months. She said there is no such thing as fair.
“Fair doesn’t live here, buddy.”
She was cutting up a tomato for salad. I don’t like salad.
I think she said more words but I didn’t listen. I was picturing a person named Fair curled up in my bed, or sitting at the kitchen table eating spaghetti.
I like spaghetti.
She said it doesn’t matter what is fair. What matters is we have to give people the chance. To be their best selves. Because mostly people are good and we all make mistakes and she is very, very sorry my head was always hurting.
I am going to try again. I am going to make my schedule and put in my drops and wear my patch. I hope for change this time.
I always try to be my best self.
Autism isn’t anyone’s fault.
It is not my fault.
The other night my father was excited and he called with a big voice from the front porch.
He said come quick there is a comet look!
At first I could not see it.
Then he stood behind me with the binoculars. He wrapped his arms around my shoulders and he showed me the star with a dazzling cornucopia of brightness.
He told me look Jack.
It is just to your left.
It took a little time. But then I saw it for myself.
My father called it. God’s flashlight.