Living Alongside Autism

I have lived alongside of autism for over twelve years, maybe even longer if you count the time my son spent in the womb, the complicated strands of his DNA twisting and bending.

It is he and he is it. Yet it is not wholly him, nor he wholly it.

It has tested my marriage, my patience, my friendships, my sanity.

It has changed the tapestry of our family, and forever altered our future.

I have ignored it, and loved it, and laid my broken spirit down by its side and begged for mercy.

I live alongside of autism, yet I do not have it myself, and so the only way I can learn it and know it and see it and feel it is by trying to listen to a boy who does not like to talk.

“No more. For the talking. I am done now.”

What’s it like? people ask. What’s it like to have a son like Jack?

What’s it like? I think to myself as I pull out of the parking lot and Hannaford’s brightly lit letters recede in the rearview mirror until they are small red ants dancing across the front of the building.

I love when people ask me all about this boy and his autism and our life. The problem is, the answer rarely fits neatly into the palm of the asker’s hand. It is not a produce-aisle-picking-out-bananas response.

Have a son like Jack is like wearing a clock on my back all the time, and there is never, ever enough time to teach him what he needs to know.

It is like watching a precious flower seek water and sun, playdates and birthday parties.

It changes every day.

I guess you could say it’s like climbing a staircase. We jump up a few steps at once, only to stumble backwards. I wish there was an elevator.

How is he? she asked. How is he now that he started his new school?

How is he? I wonder as I pile the big plastic bags from Kohls’ into the back of the car. The bags spill over with new clothes my four boys will moan and complain about but my daughter Rose will love.

One-two-three-four bright red shirts with collars and buttons, four-three-two-one scratchy grey pants with matching belts. A navy blue dress with flowers. The cutest suede boots with a tiny, tiny heel.

He’s good. He’s very good. He seems to be nearly done grieving the seventh-grader he expected to be, and adjusting to his new normal. Every morning he sits down in the dark blue minivan with the flashing sign attached to the roof. Every night he packs his lunch in his bright red nylon bag. He does homework.

Still though, there are temper tantrums. Still, there are phone calls and e-mails and reports.

I got so maddest. Again today. 

Still, he asks everyone at the dinner table what they ate in the cafeteria that day.

Was it for. Pizza day.

Still, he averts his eyes when he sees the big yellow bus turn our corner and trundle down the street. He busies himself with his music. He bites his nails.

I live alongside autism, This means I am privy to what most are not; the wistfulness and the longing in my boy’s quiet heart.

Baby steps.

Church has been hard. Not the church part–he’s used to going to Mass and sitting through the sermon and accepting the pale, thin wafer into his cupped palm. It’s the religious education part that’s become hard all of a sudden.

In our parish, the 12-year olds don’t go to weekly religion classes anymore. Instead, they meet once a month on Sunday nights in the auditorium behind the church for three hours.

Three hours of crafts, reading, lessons, and snack. This would be hard for any 12-year old. Most would stomp around and say they don’t want to go and maybe space out while the teacher spoke. But Jack, well, let’s just say he took it to a whole new level.

This is all. For not right. He sneered when the speaker stood at the podium and talked about prayer and the bible.

Jesus is not here! He screamed into crowd of kids. We will not for find him. Here.

It would be so easy, oh-so-easy to tell ourselves it doesn’t matter, he doesn’t need to make Confirmation. He’s done enough, why push it, his literal brain will never understand the abstract idea of body and bread, blood and wine.

Yet inside of me is the smallest voice that tells me to keep going; it whispers that I have to find a way to take another step up the longest staircase I have ever tried to climb. I cannot give up on this.

What is autism? They ask. Mommy, what is it?

What is it? I think to myself as I fold the red shirts and hang up the grey pants and tuck the perfect brown boots into a pale pink corner of her room.

It is all they have ever known, this phenomenon of impaired social interaction, and restricted language skills, and repetitive behavior.

It is your brother, I tell them. It is your brother and yet it is not him, because he is much, much more.

It is beautiful and complicated and mysterious and annoying. It is jumping in church and anxiety in school and small white pills at the end of the day.

I live alongside autism. Yet no matter how close I get to it—how near I stand to the hot, flickering flame, I will never truly know it. Only he knows. And he’s very, very secretive about it.

Don’t for ask me. About why I jump.

Like ducklings in a row, my five children filed in the long, wooden pew. For the most part, they agreed to the red shirts and the grey pants and the braided belts.

The baptism was small—only two babies await the priest’s gentle prayer in the nearly empty church. The ceilings feel higher than usual without a lot of people filling up the floor space.

The priest motioned, and we all stood. The cavernous space grew quiet. We listened to the opening prayer, the blessing, the explanation of commitment and dedication and promise.

After about twenty minutes, he gestured for the family to bring their white-smocked baby forward to the baptismal font. We all craned our necks to watch.

But Mom, where is he going? What is Jack doing?

I looked down at my daughter in her navy-flower dress. Her long, slim legs were crossed at the ankles, the buckle on her new boots glinting in the light.

I looked up at my tall, tall son, halfway out of his seat to the altar. He glanced over his shoulder at the rest of us still sitting. I shook my head at him once, twice, but still he stepped out into the aisle.

I am going to see. The priest and the baby.

This boy Jack, he is everything I wish I was—honest and unapologetic and curious and beloved.

At the same time, he is everything I am scared to be—unyieldingly truthful and worried and sometimes, alone.

He is the truest person I have ever known. And for all the things he does not say, still his voice has tremendous power.

Without a moment’s hesitation, he walked up to the front of the church. Again, he looked back at us, and with his finger pointed in the air, he explained.

Jesus. He is here. Now.