When Love Is Not Enough

Hey buddy. We met with some people today to talk about your future and stuff.

When you were a little boy, we used words like integrated preschool, joint attention, perseverative behavior.

Rigidity.

Speech therapy.

Autism.

We worried you’d get lost in the store because you liked to run from us. We were afraid you’d reach up and touch the burners on the stove because you had no fear.

Now, you are fourteen. We’re talking about adult day programs.

Waiting lists.

Community integration.

Medicaid.

Autism.

I guess you could say things are getting real around here. I mean, autism has always been real to me. But now it’s clock-ticking, time-is-racing kind of real.

I want you to know I’m not scared. We’ve got this.

Okay, I’ll admit it. I’m a little scared.

See, there is a small voice in the back of my mind that keeps shouting about how scared I am, how this is one big house of cards and one wrong move—the wrong program or not enough life skills or too much screen time—and it will all collapse.

All day long, this voice shouts at me from the dark recess of my brain—the very sound of fear.

It’s getting real around here.

We’re not worried about whether or not you point to a dog and look back at us to show us and see if we’re looking too.

We’re no longer worried that you’ll run away from us in the mall, or burn yourself.

Now we’re starting to worry if you would know how to answer the door because you usually start to scream when the doorbell rings, or if you would know to get out of a building if there is a fire.

We worry you won’t live on your own.

No. That’s not quite right. We’re pretty close to positive you won’t live on your own.

My son.

Independent living.

Living which is independent.

A concept so many parents take for granted—that their children will head out the door and live with a roommate and keep keys on a ring and one day pay rent. I envy them.

No, that’s not right, either. I don’t envy them. I am downright jealous of them. I am so jealous, it is like an electric current running through my arms and my legs. There are moments I long for what they have so much, I can taste it in my mouth. It is bitter, and sour.

I know, I know. Empty nest syndrome and all of that.

Do you know what I would give to one day know this nest will be empty? To know that all of my ducklings have figured out how to spread their wings and soar across the blue, blue sky? Sure, I will miss you. I will be sad. But at the same time, I will be over-the-moon happy to see you fly.

If fear is shouting at me, then jealousy is the sly whisper upon my heart. It’s ugly. It’s dark, and shameful. I am ashamed to feel this way.

I love you. But sometimes, love is not enough.

Buddy, when it comes to you and your autism, we’ve told you everything we know.

We told you how Autism Spectrum Disorder affects one in fifty-nine children. This means about 1% of the world’s population has it.

We showed you all the books we were reading, about how people with autism move their bodies to self-regulate, and the way many, many kids take medicine to soothe their anxious minds.

We took a piece of paper from the pile next to the printer and drew a picture of a bell curve—the long, sloping rainbow shape—to explain that autism is different for everyone. Some people are at one end, and others are smack in the middle.

I don’t know where you are, to be honest. You’re on there, somewhere. Maybe between the green and the purple.

What I am trying to say, Jack-a-boo, is there have been no secrets.

And yet, there is something I have never told you. Not even once.

It’s something you won’t find in any of the research, or on the Internet, or in the manuals about social stories or anxiety.

Autism is not your fault.

That’s right. Autism isn’t your fault any more than the stubborn cowlick in the back of your hair is your fault.

You didn’t cause it.

You didn’t ask for it.

I’m pretty sure you don’t even want it.

As far as I can tell, autism is a genetic condition. It’s something you inherited from someone in our family.

In other words, it’s Daddy’s fault.

Ha! No. I was making a joke.

It’s no one’s fault, really. It just is. It’s the result of some complicated mutation in your DNA.

I don’t think I’ve ever explained to you that it’s not your fault. I don’t know why.

Wait, yes I do. I don’t tell you because sometimes I forget myself.

See, I forget that the rigidity and the anxiety and the screaming every time the doorbell rings is not a choice for you. It is your diagnosis. It is the complicated mutation in your brain.

I love you, Jack. I love you so much. Unfortunately, it isn’t enough to love you.

I have to be vigilant, all the time. I have to monitor the side effects from medication and wonder if you are lonely and make sure you can cook a meal for yourself.

I have to plan for Medicaid, and fill out mountains of paperwork so you can get on a waiting list for somewhere, even when it feels like nowhere.

I have to look past what is, and see what could be. I have to help you become the best version of yourself possible. Sometimes, to be honest, I just hate this.

I’m tired. I’m tired of it all—of watching your every move and recording your progress in this dumb balance sheet I keep in my mind and worrying about the future.

I am so, so tired of worrying.

Does it ever stop? Probably not.

Sometimes, I pray it will. Please God make it stop. Head in hands make it stop, brave face blinking back tears make it stop, no sleep tired days make it stop, pit in my stomach make it stop, I cannot worry one more second make it stop.

But I will.

I will worry.

I will never stop.

Because I love you.

Even if it’s not enough.

It’s not enough to change your tangly DNA and the complicated mutation and the autism.

It’s not enough to soften the doorbell’s loud ring, or grant you a ring full of keys.

It’s not enough to alleviate your anxiety, or find your place on the rainbow.

It’s not fair. I know.

It’s not fair you have to work so much harder than everyone else around you.

My son.

I love you.

I wish it was enough.

I’ll do whatever it takes to help you fly.

I think you are in the blue part of the rainbow. Blue is your favorite color. You told me that the other day.