A Most Colorful Room


My name is Carrie.

I have five kids, and my second son is diagnosed with autism.

His name is Jack.

He is fifteen years old.

As an autism mama, I have always told myself I will never give up on my son.

Oh, I would have liked to, especially during that rough gastrointestinal phase when he was in third grade.

You know, when he came home from school every afternoon with a terrible stomach ache and then he did terrible things in the bathroom and tracked those terrible things all over the house while I tried to catch him and calm him down and get him to at least stand still in one spot so the terrible thing wasn’t on the walls.

Then there was what I like to call the foam soap phase.

During this charming stretch, Jack rubbed liquid soap all over the walls. Every time I turned around, he had big gobs of soap on his hands and he was rubbing it all over the place.

Still, I never gave up, even with all the terribleness, and the soap.

I mean, where was I going to go, exactly? What does giving up look like?

Screaming down the driveway and into the street like my hair was on fire?

Running away to join a witness protection program?

I am happy to report I didn’t do any of these things, although I fantasized about the driveway part more than once.

I stayed.

I did the work. I did the work only a mother can do, which is to say I had absolutely no idea what I was doing.

I wiped the walls and the floors and I soothed my boy, and when the particular terrible episode was finished for the afternoon, I made dinner. I went about the business of raising small children in the midst of the storm that was autism.

I guess I thought if I just behaved according to the constructs of motherhood society handed me, we would get through this.

I could heal him.

At the very least, I could change him.

So I rolled snakes out of play-dough. I sang songs. I learned sign language, and I breaded pork chops. I hid the soap in the medicine cabinet.

None of it worked.

See, autism is a formidable force. You might as well try to turn off the sun, or stop the ocean from crashing to the shore.

Listen, if you had told me when I was a young wife or a teenager or a college student that I was going to grow up and have a son with special needs,well, I probably would have shrugged my shoulders and smiled noncommittally.

Sure, I’d nod. Maybe I’ll also deliver a baby who looks like a unicorn. Both seemed equally likely, and unlikely.

When I was a kid, I didn’t know anyone with special needs. I never met a person with Down Syndrome,or Cerebral Palsy, or Autism Spectrum Disorder.

They rode a different bus to school. They met in a room down the hall, behind a door with frosted glass.

They were shadows in the background. I hardly ever thought about them, which is to say I never thought about them at all.

I never considered what they may need to get through the day, or if they ate lunch earlier or later than the rest of us.

I never wondered if they were learning the same things I was learning, or if they were happy all lumped together like a giant clump of grey.

Yet here I am. Here I am with a boy who has special needs and a diagnosis.

The door is open. I’ve walked the length of the hallway, and I am standing inside the room.

Life is weird like that. It gives us exactly what we need, before we can even imagine we need it.

Life is also complicated. Because in the middle of finding out that the very thing you need is sitting right in front of you in red pajamas, you have to go through a whole lot of other stuff first—anger, fear, insecurity, too many cookies, arguments, meetings, and tears.

It’s such a noble concept, this never giving up idea. It indicates tenacity, and commitment, and maybe a teaspoon of martyrdom.

The problem is—and I resent this more than you can know—there is no glory in it. It is not grandiose, or dramatic.

There is no fanfare.

There are no shortcuts.

You just have to show up every single day.

It is in the details. It is grunt work—wiping up the mess and heating up the pan and buying more soap.

This is what I do.

Neither one of us is a social construct—neither me nor my son.

I don’t like play dough.

I yell sometimes.

I rarely know the lyrics to all the songs.

At some point I realized I couldn’t change him, without first changing myself.

Only then, did we begin to heal.

When I walked down the hallway and opened the door, I knew at once. At once, I knew there is no such thing as grey. In this room, there is only brilliant color and light.

This story originally appeared on A Most Colorful Room

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