A Very Good Question

Do you remember going to those meetings before we got married? In that pretty house down the street?

We sat on big green couches, and listened to a couple maybe ten years older than us talk about vows and Catholicism and family. 

At some point a small boy raced through the room. The husband smiled and explained the boy woke up every morning at 5:30. I thought maybe that was the most horrible thing I could imagine.

In our quest for holy matrimony, we answered a lot of questions.

How would we spend our holidays?

Who would do the laundry?

What if one of us got sick?

Every now and again I think about those evenings. Looking back, I don’t think they covered all the bases, if you know what I mean.

I guess what I am trying to say is they should have asked what we’d do if we had a child with special needs. That might have been helpful.

What would we do if we had a baby who never stopped screaming, or a toddler who never spoke a word, or a teenager who can’t drive a car?

How would we handle a boy who is rigid, and anxious, and misunderstood?

Who lives his life according to a strict schedule, and moves his body to a silent rhythm.

Would this have prepared us? Probably not.

Would it have girded us for the years ahead—years when we tore each other apart, and also held one another aloft? I doubt it. 

We were cute weren’t we, with our vows and the church and the long white dress? We had no idea.

Roughly six years, nine months and a few days after our green-couch meetings, Jack was born. Both of us knew. We knew before the knowing.

A special-needs baby should come with a warning. I don’t know what it should say exactly, but something about no sleeping and a lot of arguing would be a good start.

He was robbed. I’m sorry, I know you hate when I say that, but he was.

Yes, autism is beautiful and it’s teaching us all how to be better people but at the same time he works so much harder to achieve what everyone else takes for granted. I hate it.

I hate what it’s taken from him.

And so, every once in a while I’m sad. Every once in a while, I grieve the boy he might have been, or the life he could have had.

A mother’s grief takes up space. It is colorful. It has a voice all its own. It is allowed, and expected. 

A father’s grief is private, and solitary. 

Our son has autism. From the moment this boy was born, we have gone about the whole business differently. 

I race against a clock, while you take your time.

Your instinct is to solve, and to fix.

You don’t need to fix this. In fact, I don’t think you can fix this. 

Maybe, during those early spring evenings on green couches, they should have asked what we would do if we had to go to a bunch meetings to figure out our son’s academic plan, or which one of us would sit in the cold car while he screamed that babies would paint him blue.

I mean, who gives a you-know-what about where we’re going to celebrate Christmas, if we spend the entire meal making sure Jack didn’t poke holes in all the dinner rolls.

You know, it probably wouldn’t have mattered anyway. It wouldn’t have mattered because you and I knew better. We knew we weren’t going to have a child with special needs because that’s the kind of thing that happened to other people, not to us.

It happened to us.

You are my witness. Only you know the invisible work of autism. Only you know it took years just to teach him how to shake hands, or how long we have tried to ease him from the structure that, ultimately, is his shackle. 

Remember the time he shouted “F$@^ YOU!’ during the middle school talent show? And we rushed him out so fast, you knocked over a chair?

You can’t say life hasn’t been interesting. 

We haven’t always been our best selves.

Warning: Autism will expose every crack, every weakness, and every flaw in your marriage. 

After the worst of days somehow, some way, we return to one another. We get up after a night of not sleeping and we drink our coffee. We offer a small smile, and we begin again.

I will never know what it’s like to be a father. But I do know what it’s like to stand beside a man who sees only his son. Not a diagnosis, or limitations, or delays.

You never lose hope. Tell me how this is possible. 

Tell me. 

Tell me how to be in this world with this boy and his autism and not hurt.

I hurt. Maybe you do, too.

Until then, let me say all the ugly things I need to say, and in exchange I won’t pry for that which you do not speak.

I hurt, but at the very exact same time, I believe in him.

I believe in us.

What if they had asked?

Maybe we would know we could give it everything we’ve got, and somehow survive. 

We could give it our all, and at the same time build a family. 

We will give it everything we’ve got. 

We are giving it everything we’ve got. 

Warning: raising a child with special needs is harder than you can imagine and you won’t sleep a lot but inside it all, there is a light. 

You will fight and cry and try and fail, and all of it will make you a vulnerable wreck of a better person. 

It is music like you’ve never heard.