The Perfect Now
Did you see him?
Did you see a tall boy standing off in the corner?
He might have been biting his fingernails. He does that a lot.
He set up the chairs.
Carefully, he lined them all in a row to make room for you elderly aunts, your college friends, and your soon-to-be in-laws.
Ten years ago, he would barely sit in a chair.
All throughout dinner, I’d chase him around the table and I’d bring him back in his seat and he would cry and bang his feet and slide down to the floor.
The tall boy is my son.
He is fifteen.
His name is Jack.
He has autism.
Autism is a little like taking a photograph of the life you imagined—easy hugs and trophies on the mantle and uninterrupted sleep—and blurring it.
Still, you hold your head up high.
I hold my head up high.
I am not ashamed of him—not even the littlest bit. Please, don’t ever think that.
I want to tell you everything about him there is to say, until there are no more words left to speak.
He loves ice cream.
He likes his hair short.
He wears glasses, and he goes to a special school, and he has a hard time making friends.
I love him.
Lately, things are good. They are not perfect, but they are good.
With autism, there is no better.
It’s not a cold.
It’s not the flu, or a broken bone, or a cut you can stitch back together.
It is not something you can fix with antibiotics, or a cast, or lots of rest and fluids.
He will never be cured.
He will never get better.
There is no better—thereis simply forward, or backward.
You take three giant steps forward.
Look! He pointed to the juice he played patty-cake he is going to be just fine, just fine.
After the three big steps, you celebrate and laugh and get pizza for dinner, and then, well, there are ten tiny steps back.
He bit his teacher in school today he keeps filling the sink with ice he won’t stop talking to himself when is this ever going to get better.
Forward.
Back.
Forward.
Back.
Now.
We are now.
Did you see him?
Did you see the way he rubs his hands together like he’s trying to get warm in front of a fire?
He never leaves the house without his watch.
He can raise one eyebrow when he smiles.
He drives me crazy.
I am so proud of him I could simply explode.
And so goes the heart of an autism mother. It is grief-wild, and alight with hope.
I remember the first time he said cookie.
I was standing at the stove making scrambled eggs. He toddled over on his sturdy 4-year old legs and said it like he’d been waiting to say it his whole life.
Cookie.
There have been times he has needed something from me I am unable to give—something unnamable, and raw.
I guess you could say autism is a little like building a house.
You start with the foundation—services and evaluations and therapies.
You make walls.
You create room.
You sit on the couch and watch your rare bird trapped inside his gilded cage and you say, yes, of course he can bake brownies.
You live your life in this house. You entire world consists of walls, and rooms, and shiny golden bars.
One day, you look for the door.
For years, I could not find the door. I begged and prayed for a door. I wanted a way out.
We have worked so hard.
He has worked so hard.
He has worked hard to master what comes so easily to other kids and I have tried to be patient and not lose my mind or yell when he asks me 3,732,985 times about thunder because his autism is also served with a side of anxiety, like icing on the proverbial cake.
I wouldn’t trade it for a second.
I might trade it for a second.
Did you see him?
Did you see the boy in the black dress pants with the glasses?
The pants belong to his father. Oh, I bought pants. In fact, I went to three different stores to find pants. But none of them fit.
If you had told me even one year ago that my son would get a job and set up chairs and wear black pants, well, I would have simply shaken my head and smiled at you kindly.
We’ve come so far.
We’ve only just begun.
Lovely bride, life is sunny and complicated and boring and great. It is full of warm cookies, and thunderstorms, and heartbreak.
There will be days when the sun sets low and orange in the sky, and you think it is the perfect moment in time.
Then there will be days when you feel you have nothing left to give.
When this happens, I hope you remember the tall, tall boy standing in the shadows.
Think of the way he lit up the kitchen with sugar on his tongue, and carefully unfolded chairs to make room for your family.
Nothing is impossible.
I found the door.
You are the door.
You can set him free.

January 13, 2020 @ 8:31 am
I simply LOVE how well you love your family and how ok you are with being vulnerable enough, REAL enough, to describe your life and your family in a way anyone can understand! WE NEED that honesty. SO proud of you BOTH!
January 13, 2020 @ 9:42 am
Oh, how grown up he looks! ❤️ I love reading about Jack. He’d reminds me so much of my Noah.
January 14, 2020 @ 4:02 am
I love your story. I love reading all about Jack. Thanks for sharing. ♥️
January 15, 2020 @ 6:36 pm
Oh sheeeeee Carrie you did it again. With the last 2 lines of this piece my nose got prickly and my eyes sprung leaks. Here at work. In an open office. You opened the universe for everyone to be a door and to simultaneously walk through. Bravo.
February 2, 2020 @ 12:42 pm
Carrie…I feel this on a spiritual level. With two boys on the spectrum; each of them beautifully unique, your words speak to me in a profound way. We Moms speak the same language….the language of intense love, undying hope and internal conflict. Thank you for sharing your journey and allowing us a sneak peak in to your family’s journey. Jack is a very lucky guy to have such an amazing cheerleader. Big love…