Perkins School for the Blind Transition Center

“The Lighter Side of the Spectrum – a Mom’s View” Will He Live on His Own?

Rarely a week goes by when I don’t wonder if my son, Jack, will ever be able to live on his own. I mean, that’s what kids do, right? They keep you up at night and drink all your milk and leave their wet, muddy boots all over the kitchen floor and cost you a bajillion dollars and then, at some point, they move out.

And you cry and cry and mourn the missed opportunities and the time you yelled about the boots and griped about the milk, but eventually, you both realize it’s for the best. Parent and child are not meant to live together forever.

Before I was a mother, I thought that one of the hardest things in the whole big entire world would be to have a child who couldn’t live independently because of a disability. I’m not even kidding. It’s like I wrote my own script.

And now, I have a child who may not live on his own.

Ever since Jack was about eighteen months old, I’ve alternated between two phrases; he can and he can’t.

Oh, there’s some variation on the wording—he won’t and he will, for example—but it’s really just a running tally of all the things he does and does not do.

He doesn’t point his finger, but he can change the DVD player.

He can turn the key in the ignition to start the car, but he has trouble tying his shoes.

He knows the capital of all fifty states, but he doesn’t understand what the word “float” means.

Then, on a fairly regular basis, I take my imaginary tally sheet and use a weird algorithm in my head with a very convoluted formula to try and answer one simple question. Will he ever be able to live independently?

Can I say it? I’ll just say it. One day, I would like to be independent too. One day I would like to be independent of Redbox and Oreo cookie challenges and autism. I would like a little breathing space.

It is a two-way street, this independence thing, and some days it feels like nothing more than a dead-end, or a really long detour with a lot of orange cones and flashing lights and constant, ongoing construction.

I know, I know, there are all sorts of assisted living places and group homes and condominiums where they mow the lawn and shovel the snow and fix your faucet if it leaks. We can set him up in an apartment that we pay for and I can stock it with pancake mix and Frosted Flakes and frozen chicken fingers, and then I can check in on him every day—or every other day, if he seems calm.

But this is not what he wants for himself. He wants to live on his own, in a house, in California. I don’t really know why California, seeing as he’s never been there, but there you have it.

He wants a wife, and a family. He wants to be a father, and drive an SUV like his own dad.

I’m not sure I can adequately describe what it feels like for me to hear him talk about his own future. It is equal parts thrilling and alarming, like I’m driving a car very fast, and I just realized the street isn’t paved and the steering wheel is broken.

He can tell me the shortest route to the mall, but once we’re there he might wander away and get lost.

He will talk about Disney movies with anyone, but he has no interest in what the other person has to say.

He knows the population of Zimbabwe, but he gets confused if someone talks too fast.

I know, I know, he’s not even twelve yet and there’s plenty of time and it’s too soon to worry, why just look at all the progress he’s made!

But if there’s anything an autism mama knows, it’s that time is not on our side.

He can, but he won’t.

He should, but he doesn’t.

He has, but he never.

Whether I have realized it or not, every molecule of my being has been dedicated to making this boy independent. Every waking hour, we work on his social skills and his muscle tone and his expressive language and his regulation so he may one day be liberated from an aide school, from the confines of the spectrum disorder, from us.

Some days, I start to get comfortable.

Look at him! He’s making waffles! He’s totally going to live on his own one day.

Did you see? He looked the waiter right in the eye when he ordered his chicken fingers!

He hasn’t said the f-word in three days, things are totally getting better!

Then we travel somewhere, and I watch, two paces behind, as he tries to get through security at the airport; both he and the TSA personnel frustrated and confused.

Please, just step forward. No, not all the way forward, back a little. Please, back a little.

Or as he waits in line for the water slide, impatient and abrupt when the little kid ahead of him takes a few minutes to muster up the courage to slide down into the pool.

It is time for you. TO GO DOWN NOW.

Or he throws an epic tantrum at school, and he cleans out his locker and insists he’s never going back and the next morning he refuses to get on the bus even though I know—I know—he’s desperate to graduate from high school like his older brother Joey and talks about going to college and wants to be a record producer in California.

His future self changes from time to time—for a while he wanted to be a chef, then the owner of a fast-food restaurant, and now, a record producer. I’m pretty sure all of these require he finishes at least sixth grade.

He wants to, but he may not be able to.

I think about all the little nuances to an independent life for which there is no social story, no preparation.

Scraping ice off of a windshield.

Longer-than usual lines at the post office.

A girl scout selling cookies on a Sunday afternoon.

For the past ten years, I have been trying to adjust his dreams to suit his reality, the way salt water washes over rocks on the shore until they are nothing more than tiny grains of sand.

No, only Joey is going to the birthday party, come on, I’ll take you for ice cream instead.

Please, I need you to hold my hand and stay with me in the store.

Jack, I know but you have to have an aide in school.

Now I know. I know that one of the hardest things in the whole big entire world isn’t having child who doesn’t live independently because of a disability. It’s hearing this child talk and wish and hope–a child who longs for California and a four-wheel drive Toyota Sequoia and a house and a wife and a son of his own–and knowing I must somehow help him build a castle out of sand.

In the meantime, all I can do is teach him how to swim, even when the water is icy cold and the undertow is dangerous and the waves are crashing down all around us.

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