My Son Has Autism and I’ll Take Care of Him for the Rest of His Life

Forever Mother [ for·​ev·​er  moth·​er ]: a mother who will spend the rest of her life taking care of her child’s day-to-day financial and health care needs. She will arrange appointments, oversee medical care, and manage bank accounts long into his adulthood.

I’m not sure when I started to think of myself this way. I guess it was slow—an ebbing of the life I imagined I’d have, into the one taking shape before my eyes. 

Once upon of time, I had this picture in my mind of my son as an adult. Gradually, as the months became years, the edges of the photo blurred, and softened. Jack is sixteen now, and the picture I once held dear is nearly unrecognizable. 

I am a Forever Mother.

Mom with son
My son is worth it. (image via Carrie Cariello)

It’s uncomfortable to talk about Forever Mothers

We don’t talk about Forever Mothers too much. It’s a little uncomfortable. I get it, I do. Who wants to consider a lifetime of obligation, responsibility and legal minutiae?

I don’t want to do this forever. I mean, where is the finish line? What is the end game? But I can’t say that out loud. It’s too selfish, and small. 

I am selfish.

And small.

No one talks about the Forever Mothers. 

We don’t even talk amongst ourselves. We don’t gather at Starbucks and confess that we are lonely. We don’t say the words that sit firmly upon our psyche, like elephants in an elevator: guardianship, group homes, family court. 

We don’t admit we are stuck on a roller coaster of highs and lows, hope and grief.

Forever moms have a hard time sharing their plight, even with each other

This is what we do. We isolate, and worry, and hope, and plan. The truth is that there is another world inside of us that feels too hard to explain. 

Once I started having kids, I knew I would always be a mother in one way or another. After all, motherhood doesn’t stop once your children move out of the house, or get married, or have children of their own. 

I hoped I could do it right. I hoped I would be good at it. 

I thought I might need to give gentle advice about marital woes, or offer to babysit for the weekend. And I’d chase the wobbly toddler or rock the sleepy baby, and think back to the days when I was overtired, and unsure.

I am overtired.

I am unsure.

I am a Forever Mother.

I keep a running tally in my head. I hate this about myself, but there you have it. It’s what I do.

Jack can make an omelet but we have a gas stovetop so when he cooks I have to listen for the click and then the hushed whoosh of the flame. Otherwise he will let it keep clicking and gas will slowly fill up the room.

Or the way the plumber stopped by the house three weeks ago for a small issue, and needed to turn the water off for a few hours. Every single day since, Jack has asked if he can flush the toilet. And I snap back, yes, that was weeks ago, please stop asking me and just flush the toilet already. 

I hoped I could do it right. I hoped I would be good at it. 

I am not doing it right. 

I am a Forever Mother.

I will do this forever and it’s overwhelming

I will do this forever. Forever is big. It takes up a lot of space.

He may never get married. 

Or have children.

I’m not saying there aren’t options. There are college-type schools with lots of academic scaffolding, and there are different kinds of living arrangements and job programs.

But in some capacity, I will be involved in it all. The arrangements, and the programs, and the options. 

I will always have to be involved in my son’s life. I will have to oversee where he lives, his healthcare, his finances, and his day-to-day activity. I will have to monitor the side effects of any changes in his medication

Every morning, I make his bed. He is more than capable of making it himself—after all, he unloads the dishwasher and lets the dog out and drags the garbage cans down the driveway before any of us are even awake—but still, I do it. 

I do it, because in some small way, I want to tell him how much I love him. 

I want to tell him I will take care of him. 

Who will do this when I’m gone?

I know if the Good Lord grants me a final wish before this life of mine is over, my son’s name will likely be the last breath I take.

Please take care of Jack.

This isn’t because I love him more, or better, than anyone else in my life.

It is because he needs me. 

A Forever Mother thinks of her Forever Child, first and last

It is because I am a Forever Mother, and a Forever Mother thinks of her complicated child first, and also last.

I root for him.

Maybe that’s what you don’t see.

I root for him, and all that is rightfully his. I root for him—for who he is, and who he may become. 

He will do great things. I just know it. In my bones, I know it. 

I will be his Forever Mother, always. And I will do whatever I need to do.

Not because I have to, or because it’s my responsibility. 

I will do it for the same reason I open my eyes to the sound of his early morning footsteps on the driveway, and pull the striped blankets on his bed up tight. 

I will do it because he is worth it. My son is worth it. 

More to Read:

My Son Has Autism, Raising Him Was an Every Day Battle and I Miss It

Loosening the Ties that Bind: Growing Up with Autism

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