I am a Forever Mother

All five of my kids have really peculiar teeth. Which is kind of ironic, seeing as my husband is a dentist.

Missing laterals, crowding, odd bite patterns—we’ve got it all.

My son Jack has what is called a class three underbite, which means his lower jaw comes out much further than it should.

He’ll probably need to have a lot of teeth pulled.

And there is a surgery to correct the whole thing. It is big and long and complicated, with a very difficult recovery.

We could never put him through that. In fact, we won’t put him through that.

But I have to decide for him, that’s the thing. For the rest of my life, I will have to decide if he needs to get his teeth out, and find the right specialist if he has a health issue, and watch for any side effects if we change his medication.

I am what’s called a Forever Mother, you see.

I am a Forever Mother to this boy, and his autism.

For the rest of my life, I will have to monitor his social media and Internet accounts, to make sure someone isn’t preying upon his vulnerability.

I will need to have my name on his bank accounts, and help manage his deposits and withdrawals.

I am a Forever Mother.

I can’t tell you when I first realized this. It wasn’t a big revelation, or anything like that.    

It was more like a collection of moments, if you will—an accumulation of observations, and memories, and instincts.

You see, since this child was born, I have I kept a long stream of internal dialogue and fervent examination going in my brain.

How much he slept, and ate, and cried.

His first word, his first sentence, the first time he could manage a sippy cup.

For the last three or four years, I have tried to imagine his life as a young adult.

I watch him pace and jump and scream when the doorbell rings, and I think, how could he ever live alone?

Maybe if we did a lot of social stories about doorbells and had one installed in his apartment that is very, very quiet. Maybe then.

Maybe he’ll learn to drive, if we can just get his anxiety under control, as well as some issues with executive functioning.

Maybe he will make a friend, if we found the right group for him.

Over time, the word maybe began to fall away from the start of my sentence, like petals from a flower.

I am a Forever Mother.

There is no formula for this. It is the most powerfully individual journey I have ever known, and we walk it alone.

I just wish I knew exactly what his limitations are, if that makes sense. It might be easier if I knew for certain he would never

I could close some doors, and open others.

I would do anything to quiet my mind.

That’s hope for you. Like a bag of rocks on your back, it pulls you back again and again. It reminds you anything worth doing is going to be hard, and fierce.

I am a Forever Mother.

My son Jack is sixteen now. Alongside the petals dropping to the floor, the somewhat fluid idea of if slowly has become a solid when.

When we file the paperwork to obtain guardianship.

When we see if he can handle public transportation.

When we begin to investigate alternatives to living at home.

When we break his heart.

I am a Forever Mother.

This is okay.

It is mostly okay.

He is the bravest person I have ever known.

He is teaching me how to be a better person.

Written by, Carrie Cariello

Carrie Cariello is the author of What Color Is Monday, How Autism Changed One Family for the Better, and Someone I’m With Has Autism. She lives in Southern New Hampshire with her husband, Joe, and their five children. Carrie is a contributor to the Huffington Post, TODAY Parents, the TODAY Show, Parents.com. She has been interviewed by NBC Nightly News, and also has a TEDx talk.

She speaks regularly about autism, marriage, and motherhood, and writes a weekly blog at www.carriecariello.com. One of her essays, “I Know What Causes Autism,” was featured as one of the Huffington Post’s best of 2015, and her piece, “I Know Why He Has Autism,” was named one of the top blog posts of 2017 by the TODAY Show.

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