The Mighty Logo

Struggling to Find My Role After Placing My Son With Autism in Residential Care

The most helpful emails in health
Browse our free newsletters

Evidently I’ve been seeing myself all wrong.

This was made clear two days after my last birthday, as I stood checking my phone for emails while waiting in line at the post office.

There, a woman about 10 years older than me swept in and called out cheerily, “I just love seeing seniors using cell phones!”

I received this news better than you might expect. Too dumbfounded to take offense, I replied mildly that I had indeed entered official seniorhood just that week, but still thought of myself as young, hardly a grown-up at all.

“You know,” I continued, leaning forward confidentially, “besides using a cellphone, I still listen to rock and roll!” I cocked a sly brow. “And Eminem is, like, totally awesome!”

I’m afraid my hipness failed to register, but at least the woman next in line got a chuckle from my response.

That encounter made me wonder, though, if the self-image I’ve carried for years bears any resemblance to how others see me.

My son’s recent move to a new living situation has me wondering, too, what impression I’m making on his care team, a vulnerability I didn’t anticipate after years of these transitions.

His case manager Aaron has advised us to expect a change in our relationship with Daniel, as he responds to a more challenging, stimulating environment, and we give up our roles as day-to-day caregivers. We’ll gain freedom to enjoy more satisfying interactions and be part of our son’s life on a deeper, more meaningful level.

“Your relationship won’t be better or worse,” Aaron has said a number of times, “just different.”


It’s a spiel I imagine him giving all the newbie parents letting go of children whose needs have so dramatically shaped their lives. For our children’s development to be successful, we parents must adjust just as they are doing. It seems to be Aaron’s gentle way of telling us to back off now and let them do their jobs, so our children can flourish in adulthood.

Yet I fear sometimes that his parental pep talk is aimed specifically at me, that he senses my longing to reclaim the boy I relinquished to residential care over seven years ago. I imagine Aaron watching me, wary that I’ll sabotage Daniel’s progress through my neediness.

Does he see a woman clinging to an ideal already gone, the boy Daniel still was to me when he left home? Back when I was the one who knew him best, the person he needed most, the one he sought, in his singular fashion, to comfort him?

Does he see a mother, whose son has spent nearly a third of his life away from home, pining blindly for the day he’ll come back? A mother threatened by her son’s move toward maturity, who fears losing more than she’s already lost?

As Daniel transitions into a new life and the future I want for him actually seems possible, my relationship with him feels more tenuous than ever, and I know I am that woman, whether Aaron sees me this way or not.

It’s taken me the two months since his move to acknowledge that my relief and joy at Daniel’s encouraging start is tempered by an ache for the days when he was truly “mine.” When his days began and ended with my voice, my touch, my assurances of a love that would last forever. I recognize that a part of me has been waiting seven years for him to come back home.

I want to assure Aaron that he needn’t worry, that I’m an old hand at this: I know all about letting go, the wrenching loss of doing what is best for my son. And I know, too, the freedom from the demands of caring for him. I know that freedom, and I know its cost.

It is the gradual unraveling of our relationship, the fabric of our lives worn thin by time, by distance. It is clutching the frayed edges of a bond that in all its mystery was once close and touchable, woven thick and warm and comforting through years of ordinary, intimate moments spent together, routines we made uniquely our own.

It is the recognition that in many ways my son feels like a stranger, that mere visits couldn’t fully bridge the gulf between us as Daniel grew from child to young adult, miles away from home. It is fearing that the lyrics of the Gotye song I so often listened to on my drives home from Wisconsin now apply to my own child: Now you’re just somebody that I used to know.

Maybe Aaron sees me as a mother desperate for a time gone by. He wouldn’t be wholly wrong.

But I am also a mother who has transitioned along with her son for over 20 years, a mother able to do so again. I’m a mother profoundly grateful for this fresh chance, willing to learn a new way of connecting with my son, ready to be whatever he needs me, now, to be. I am a mother who understands that love is not always enough, yet love remains more powerful than grief.

It’s Aaron’s role to ask us to step back and let go, to allow his team to guide my son toward the goals we believe he is capable of achieving. And it’s my role to do so, to let go of the boy of my memory, and embrace the young man he’s become.

But there’s letting go, and there’s letting go.

My heart will not surrender all that has shaped our lives together, or my most cherished role as his mother. That woman will always be right there, behind him.

I can’t see myself any other way.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? If you’d like to participate, please send a blog post to Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

Originally published: April 20, 2016
Want more of The Mighty?
You can find even more stories on our Home page. There, you’ll also find thoughts and questions by our community.
Take Me Home