From Where I Sit
Dear Carrie,
I know things—things you think I cannot possibly know.
I know whether or not Trump becomes President, and who won the 2025 World Series, and how many children Prince William has with Kate Middleton.
I know which team won the Super Bowl in 2036, although I didn’t pay too much attention to the game, to be honest, because I was too busy eating all the snacks. We made that yummy corn salsa, remember?
Well, of course you don’t remember.
I know how many grandchildren you have, and the way you can’t eat anything in the morning until you’ve had a cup of coffee, and what color you finally decided to paint the outside of the house.
I know that every time you were pregnant, you craved Apple Jacks for lunch.
I held each of your five babies the minute they were born, and I fed them their first spoonful of cereal, and I waved to the big yellow bus on their first day of kindergarten.
I remember the weddings and the christenings, the basketball games and the high school dances.
I remember the day your daughter Rose learned to swim, and the time your oldest son Joey’s baseball team won the championship.
I’ve read all the books you’ve read and run the miles you’ve run and eaten the cookies you’ve baked.
(In 2019 you find the best recipe for oatmeal raisin cookies with butterscotch chips.)
Am I am fortune-teller? A soothsayer? Some kind of oracle, maybe, or a psychic.
No. I am none of those. I am you.
I know if you cut your hair short like Robin Wright in House of Cards.
I know how the last season of House of Cards ends.
I know how it feels to go through menopause.
I know how it feels to be a mother.
I know for you, it is summer now. The days are hot, but at night it gets cooler. You have been leaving your windows open for the fresh air, and every morning around 4:00, the woods surrounding the house become alive with the music of birds.
It’s as if all day long, they sit in the trees and save up every whistle—every word and every song—and then in the early hours of dawn, they crescendo like a winged orchestra. You open your eyes, sometimes with a start, and look around the darkened bedroom. You think to yourself, it’s the birds again, and then you fall back asleep.
Around 6:00 am, you wake again to the sound of running water in the downstairs bathroom. It’s Jack, taking his first shower of the day.
He showers constantly lately. Every time you turn around, he’s in the bathroom, turning on the water. It’s making you crazy.
Is this puberty? Or anxiety? Or a new fascination with the water pressure, like when he was in second grade and he walked from bathroom to bathroom, flushing all the toilets?
Or maybe it’s the beginning stages of autism’s sketchy co-pilot; obsessive-compulsive disorder.
Every time he turns on the water, you shove that thought back into the recess of your brain, the same way you shove the Christmas ornaments into the dusty corner of the basement after the holidays. It’s too scary to think about.
See, I know everything about you.
I know you are re-reading Bel Canto by Ann Patchett because it is one of your very favorite books.
I know you worry about your kids using heroin, or if they eat too much junk food, or whether or not they should get an allowance.
I know you worry about autism.
I know you are hurting.
From where I sit, I see your pain. It is visible in the dazzling summer sun. In fact, I feel it too; a deep heartache that follows the both of us.
Last week you got the results of Jack’s latest round of testing—a neuropsychological exam that you requested because he talks to himself so much and you wanted to make sure he isn’t hearing voices in his mind.
And while the doctor confirmed that he is not, in fact, hearing voices, but just self-soothing himself with the talking, she also confirmed a whole lot of other stuff.
When the kids went to bed, you printed all twenty-three pages of the report. The printer ran out of ink on page ten you and felt a surge of rage so strong, you wanted to pick the clunky black printer up off the top of the desk and smash the whole thing to the floor.
And after you changed the stupid ink cartridge and finished collecting all the papers—page fourteen had slipped underneath the chair—you sat back and read it through.
Ability to understand and reason with verbal information is below age expectation.
Short-term and visual memory significantly below age expectation.
Continues to have significant difficulty relating to others.
Below average, on the lower range, continued delay.
Repetitive, jumpy, anxious, depressed.
Your 12-year old boy, your beloved son, your caged spectrum bird.
The next morning you during breakfast you looked at him while he sat munching on Rice Chex because it’s his new favorite cereal, and it felt like you were sitting across the counter from a stranger—like you had to reacquaint yourself with him all over again.
Let me remind you, that he is still the same boy. A test cannot change the person he is, only the person he may become.
You and Joe, you are hurting separately. From where I sit, I watch this.
I know you are thinking of all the things you have weathered together—fierce disagreements and long nights without sleep and the time 6-year old Henry broke his leg on the last day of school—and yet grieving your son with autism is a gulf you cannot cross for one another.
I know what you want. You want me to tell you how it all works out.
You want to know if he graduates high school, and if he ever learns to stop stimming, and if he can one day stop taking the small pills before bed that control his insatiable anxiety.
Your longing is palpable. It has a heartbeat. Like your hurt, it too is visible beneath the bright summer sun.
I am sorry, but I cannot tell you. I cannot reveal the ending to your own story. You have to live it. But I will tell you this.
He will one day find his own song. He will spread his wings and fly, and somehow build a nest.
You won’t stop until he does—you won’t stop the testing or the learning or the trying or the hoping. You won’t stop grieving, and you won’t stop celebrating. Because this, dear self, is how it feels to be his mother.
In the meantime, the birds will sing all summer long, and the water will run, and in the early morning hours of dawn, it will be hard to tell where one melody ends, and the new one begins.
Jill Hawkins
July 4, 2016 @ 4:11 pm
Oh that line..you never stop grieving and you never stop celebrating. So true. Thank you!
GP
July 4, 2016 @ 4:21 pm
There is a lot of pressure on folks on the spectrum to “act normal” and to “fake it till you make it.” It can drive someone’s anxiety through the roof. Unconditional acceptance and encouragement are key in decreasing this anxiety. It is ok to stim unless it is harmful. It is ok to talk to yourself if it helps you cope. It is ok to be on the autism spectrum. In fact, it is so much more than ok. It is something that cannot be changed. Yes, coping skills can be taught, but the basic operating system is different. So, we might as well try to “accentuate to positive” and look for positive role models in the autism community. There is a huge community out there, and they’ll have Jack’s back.
terismyth
July 10, 2016 @ 3:18 pm
I get it. I’ve been there. I too am still dealing with my son’s disability as best I can. I can tell you that it is a roller coaster. There will be ups and downs. Plenty of them. My 23 yr old is now in Hungary singing with his college choir. This is one of our “ups.” He is in his glory right now competing in the world choir games with 30 of his classmates. He was supposed to graduate a year ago, but that never happened. He failed 3 of his 5 last classes in college. We were surprised, but not shocked since this happened last year at the same time. Like I said, its a roller coaster. Just go along for the ride Carrie.