Pretend

There are so many things I want you to know, but I don’t know how to tell you.

We never have enough time in our meetings, between reviewing my son Jack’s IEP, and planning for summer school, and signing the endless pieces of paper.

I want you to know I’m not angry. I’m grieving.

And If I seem defensive, it’s really because I’m nervous.

You see, these meetings are a reminder of what I have lost. The thick stack of paper whittles my boy down to a black and white shell—a cold collection of words and acronyms.

Jack has autism.

Jack has a severe speech delay.

Jack has zero chance of ever living a normal, productive life outside of his parents’ basement. He will probably sleep on a pullout couch that came from his great aunt’s house and is made out of velour and is shiny.

Okay, okay. Maybe not that last part.

I want to tell you that I know we are a team and we both want the best for my son and I am grateful for your time, and your interest, and your experience. I am grateful for the hours you spent putting together his file and researching his therapies and connecting with his teachers.

I know you have a job to do, and I promise I’m not trying to make it harder by asking a million questions and making a bunch of suggestions.

It’s just that tonight, I will look across the dinner table at my tender, trying son and my heart will flutter. I will wonder if I’ve done the best I could for him today—if I asked for the all things he needs and understood the fine print on those official forms.

I’ll try not to talk too much. I do that when I’m uncertain. I turn into a great big talking head and my mouth is going a mile a minute and my brain is going even faster.

I’m thinking about a bajillion things, like how time is speeding by, and now he’s thirteen which is half of twenty-six only five more years until he can vote but he still has trouble following directions with more than two steps.

He is obsessed with ice right now. Every time I look in the kitchen sink, there’s a big pile of it.

I try to be all casual about. I try to tell myself that it’s just ice, no big deal. It’s just frozen water that comes out of the machine in the refrigerator.

The thing is, it’s not just ice. It’s rigidity and obsessive behavior and autism all frozen together, and it drives me crazy.

Please forgive me if it seems like I zone out a little when we go over his paperwork. See, while we’re flipping through the stapled pages, I’m remembering the first time I held him in his striped hospital blanket. He was warm and sleepy and oh-so-sweet.

I’m thinking about an afternoon in November years ago, when the clouds were heavy and the sky was grey and it felt like it might snow any second. On this day, the doctor told me the words I’d been waiting to hear.

Mrs. Cariello, your son’s symptoms are consistent with Autism Spectrum Disorder.

After those words, I zipped up Jack’s coat and I held his hand in the parking lot and I buckled him in his car seat the same way I always did. But the whole I time I knew. I knew things would never be the same again.

I am thinking about all the times I strapped hope’s heavy load on my back and climbed a mountain, only to stumble backwards.

I’m not sure if you know this, but in sixth grade, we lost him. I don’t mean we actually lost him, like in a store or the mall. Oh no, every afternoon he sat at the kitchen counter and ate pretzels, and he slept right snug in his bed, and he sometimes turned his head when we called his name. But he was gone. I don’t know how else to describe it to you.

He was frantic, and panicked. He was bewildered by the social interaction on the playground and he was paranoid someone was going to hurt him and he talked to himself all the time.

He told us he would need to bring a knife to school because he was so scared and so confused and we were terrified. We told him to stay away from the knives or we would be very, very mad.

I want to tell you all of these things today so when you read the name Jack Cariello on the folder, you can look beyond the diagnosis and the acronyms, and see the real boy underneath. You’ll know how hard he’s trying and how hard I’m trying and all at once, the black and white letters will explode with color and dance across the page.

I want to tell you so the next time you read his evaluation and you have to make recommendations, you can pause for a moment, and pretend he’s your son.

Pretend you snuggled him against your chest when he was born, and you smoothed the striped blanket so it was snug and cozy against his tiny arms.

Pretend you held his chubby hand in the parking lot on the cold, grey day in November when life changed forever.

Pretend you were there for the horrific tantrums, and the screaming, and the panic.

Pretend you had to hide the knives in the very back of the top cabinet.

Pretend you are cradling his tender life between your hands, like a delicate bird waiting to fly.

Pretend you are his mother, and you have only one chance to raise this boy and keep him safe.

It’s hardly ever never about the ice.

Sometimes it snows in November.