Living With Autism
Who are you?
I sit across from you at the table, and I watch you reach for a roll and I think about how your fingers are long, like mine.
I listen to you order your lunch from the server and I see your eyes dart up to her face and back down to your menu, and I think of my brother, because his eyes are the same color blue.
But really, who are you?
I mean, of course I know who you are. Your name is John, but we call you Jack. You were born in May of 2004. It was Mother’s Day.
You were diagnosed with autism on November 3, 2006. You were eighteen months old.
You sleep with six pillows at night, and your favorite color is blue.
You take a bath as soon as you wake up every morning, and you like to play music while you eat.
You are tall, and you wear glasses, and you keep your hair very, very short.
You are my son. I know exactly who you are.
Yet, at the same time, I feel I hardly know you at all.
What do you hope for?
How come you hate yogurt so much?
Do you ever think about God?
And why, for the love of all things holy and beautiful, do you need the radio on 94.1 all the time?
I want to hear you talk.
I mean, of course you talk. After about a bazillion hours of speech therapy and social play groups and word games, you talk quite a bit, as a matter of fact. But it’s mostly scripted conversation—bits and pieces stolen from commercials and radio shows—or obsessive questions about the schedule.
OxiClean. For the very whitest clothes.
I want to know you. I mean, that sounds so silly. Of course I know you, right? Except I don’t.
I know eat raw spaghetti out of the cabinet, but I don’t know why.
I know you have memorized last year’s school directory, but I don’t know how.
I know at some point you’ll figure out my new password to Amazon and order a bunch of movies that I’ll have to box up and return, but I don’t know when. Or how.
The other day, when we were at home, I asked you about the spaghetti. You just looked at me blankly, like you had no idea what I was talking about, and you didn’t answer me.
I wish you would answer me.
See, buddy, not a day goes by when I don’t look at you and long for a crystal ball so I could peer inside and see the future.
Will you ever learn boundaries when it comes to passwords, or understand how a mortgage works, or apply for a job?
And at the very same exact precise moment I wish for a crystal ball, I try turn the clock backwards in my mind.
Should we have done more ABA therapy, or tried a gluten-free diet, or maybe bought a weighted blanket for all the nights you couldn’t sleep?
Today, I sit across from you in this crowded restaurant, and our conversation reminds me of two old people who have eaten lunch together a million times. It is casual, banal—full of details but lacking in depth.
For tomorrow. It will be cold.
Uh huh, better bring your gloves.
We don’t talk about things most teenage old boys would be interested in—whether or not the Patriots will win the Super Bowl, or tentative smiles across the hallway with girls, or how high your grades should be to get into college.
This makes me sad.
Jack-a-boo, it’s hard to explain how much my mother’s heart longs for connection. I guess you could say it’s a little like trying to describe a Picasso painting to someone who can’t see.
Sure, we have the mechanics—the straight lines, and the paintbrushes dipped in wet paint, and observations about the weather—but I can’t figure out a way to add the color. I want brilliant yellows that pirouette from the canvas, or the cool blues and rich reds of an artist’s palette.
I guess it can be restful in a way. When we sit together, I don’t really have to think. I don’t have to come up with answers about why the sky is blue or try to explain that it’s important to study for tests at school or remind you that you have to wear a collared shirt to the next school dance.
The thing is, I never stop thinking when I’m around you. I never stop thinking of ways to draw you out and away from autism’s inner world—to engage you in the here and now.
Sometimes I wonder what it means to you when you hear me tell people that you have an autism diagnosis. I mean, I say it all the time.
He has autism.
Do you know anything about autism?
This is my son, he is diagnosed with autism.
Does it sound like I’m making excuses for you?
Do you think I’m trying to justify you, or to validate your right to stand amongst us? Do you think I am apologizing for the person you are and what you have?
I’m not. I promise you, I am not.
See buddy, there is a very fine line between awareness and apology. And every day, I stand upon the tightrope, and I put one foot in front of the other and I wobble there, high up in the air, and I decide.
I decide I want everyone to understand more about autism.
I decide you are important.
I decide you are worth explaining.
I long to tell you all of this, as we sit here and munch on our pizza. The wanting so strong, it makes my throat ache.
I don’t, though. Because I don’t know how.
Instead, I sit here in this sticky booth, and I consider all the little gifts autism has left behind in its tumultuous wake. See, I do this every now again, to remind myself it isn’t all bad, that sometimes autism can surprise me.
Because of you, I know exactly who I am. I am a mother, and an advocate.
Because of you, I have no choice but to be my authentic, pure self.
Because of you, I learned how to build a family around an unexpected child.
Because of you, I realize the word home is synonymous for many other things—broken dreams and new beginnings and hope. It is the place where we are known for exactly who we are.
Home is the place where Daddy and I have taken a very big breath, and decided to design our family however we want. We decided to throw off the cultural shackles of soccer games and swim meets and tournaments, and decided instead on family dinners, games of charades, and chasing fireflies in the summer.
Home is where the smallest voice has space to sing.
You did this. You did this for us. You made us decide. You made us be real. You made us whole. You helped us see bright splashes of color in the middle of a cold, grey landscape.
For me. It is crunchy. The spaghetti.
I know you are in there, Jack-a-boo.
Take your time. I’ll wait.
January 29, 2018 @ 12:15 pm
Yes, life is harder than we could have imagined, yet we learn unimaginable things.
January 29, 2018 @ 12:32 pm
Thank you. I needed this today.
January 29, 2018 @ 1:12 pm
Thank you. What an in credible blessing it is to read the poetic, graceful, powerful words of someone who feels what I have felt. You have added to my strength reserve today with your imagery and grace. Thank you.
January 29, 2018 @ 11:40 pm
keep plugging along Mom. Raising a son with autism is hard.
I’ve had ups and downs too and still struggle with knowing my boundaries with my son who is 25. I’ve stepped back a lot so that he can figure trhings out for himself. Yet, I can be an immense support for him when I’m needed.
Hope you stay encouraged that things will continue to improve with Jack. They did with my son and for that I’m grateful.
Always look forward to reading your posts. You writing is eloquent and heart wrenching. Thank you
January 30, 2018 @ 8:15 am
I so understand. Thank you for sharing
January 30, 2018 @ 9:01 am
It is for the mothers and families like yours that our special ed team does the best we can everyday at school for “our” kids. We think of them that way yet we are acutely aware there is a level of “our” which only the families deal with. You are the foundation on which our work is built and your love and dedication is inspiring.
January 31, 2018 @ 12:25 pm
Thank you, for putting a voice to the thoughts in my head