Maybe I have It All Wrong

Written by Bethanie Milford, LCSW

Edited by Christina Thompson

The Little Girl Who Never Left

There are moments when I hear her laugh and squeal at the silliest things, and others when she climbs onto me or her father as though she were still three years old, even though she is an adult now. She will ask, “Wanna kiss?” or sing an entire song from the 1980s without missing a word. Then I remember she cannot carry on a conversation with me in the way most people expect. To her, I will always be “Mommy,” and her father will always be “Daddy.”

Sometimes I wonder if I have it all wrong.

What if I am the one who is lost, and she is the one quietly saving me?

Whose World Is It?

Loving her has left me with no choice but to slow down. While life rushes forward, blurring past like a speeding train, she anchors me in moments most people never pause long enough to notice. The world tells us that success is measured by productivity, independence, speed, and achievement. It insists there is a timeline we are all supposed to follow and that those who cannot keep pace are somehow broken or less valuable.

But perhaps the metric is wrong.

Perhaps the greatest lessons are found in moments that cannot be rushed, where love is measured not by milestones but by presence.

I remember listening to “Part of Your World” from The Little Mermaid and thinking, That must be what she feels like, watching a world she longs to be part of, one that was never built for her.

Over time, though, I began to wonder if I had it backwards.

What if we are the ones trying to fit her into our world, when all along we have been visitors in hers? What if we are the ones struggling to understand a way of experiencing life that has always been complete in its own right?

Whose world is right? Whose is wrong? Or is the answer that neither is wrong, that we simply experience the same world differently?

Perhaps the real challenge isn’t teaching her to become more like us. Perhaps it’s learning to slow down long enough to appreciate the beauty of seeing the world through her eyes.

The Grief No One Talks About

That perspective did not come easily.

There were seasons when I carried an honest sense of frustration. Her mood, her level of regulation, and the unpredictability of each day often determined how our family functioned. Plans could change within minutes.

We missed birthdays, holidays, vacations, family gatherings, career opportunities, and countless ordinary moments many families take for granted. While I would choose my daughter every single time, it would be dishonest to pretend those losses didn’t hurt.

They did.

I believe caregivers are allowed to hold two truths at once. We can love our children unconditionally while grieving the opportunities we have lost. We can celebrate who they are while mourning the future we once imagined. Those emotions are not mutually exclusive, nor do they diminish our love.

Looking back, I realize I wasn’t grieving my daughter.

I was grieving the relentless weight of navigating systems that left our family struggling to stay afloat. I was grieving years spent wondering whether we would ever have the opportunity to thrive instead of merely survive.

Letting Go of the Story I Wrote

As she grew older, the grief changed.

The opportunities available to her became fewer, and with every milestone that passed, another expectation quietly slipped away.

I remember sharing those feelings once and being told, “All parents go through things with their children.”

They were right.

Every parent experiences disappointment and uncertainty.

But that wasn’t what I was trying to say.

What I was describing was a very specific kind of grief that many caregivers experience when they begin letting go of the future they once imagined. This isn’t about judging our children’s lives or assuming what they want. Many autistic people may not desire the milestones society values. This grief belongs to the parents, not to the child.

For us, it meant accepting we would likely never watch her play on a sports team, hear about a first date, help her get ready for prom, celebrate her moving into her own home, watch her marry, or see her become a parent. For some families, it also means grieving the possibility of never becoming grandparents.

That grief is real.

It does not mean we love our daughter any less. It simply means we are learning to let go of one story while embracing another.

Redefining Joy

And what a beautiful story it has become.

As time has passed, I have come to realize that her happiness looks nothing like what I once imagined.

She is happiest in her room or on the couch, memorizing maps on her iPad, listening to songs I have never heard, doing art or making crafts, or playing music so loudly that she rocks back and forth with pure joy. While we are celebrating one holiday, she is already planning the next. She wants to know exactly what we’ll eat, who will be there, how we’ll decorate, and, perhaps most importantly, whether there will be goody bags for birthdays and the holidays she loves most.

These are the things that matter to her at nineteen.

She isn’t worried about choosing a college, building a career, deciding what to wear to meet friends, or preparing for a first date.

Her joys are different.

But they are no less meaningful.

The Gifts She Gave Me

Sometimes I wonder if one of the gifts of living with high support needs is that she has never felt compelled to become someone she isn’t. She doesn’t chase acceptance. She doesn’t measure herself against someone else’s definition of success. She simply exists as herself, fully immersed in the things that bring her comfort, excitement, and joy.

Perhaps that is one of the hardest things for the neurotypical world to understand.

We spend so much of our lives trying to become who we think we are supposed to be.

She never has.

Another gift revealed itself years ago through a dear friend who said something I have never forgotten.

“Your daughter will never understand prejudice.”

I have carried those words with me ever since.

From everything we have observed, she doesn’t seem to understand jealousy, hatred, or the desire to be malicious. She meets people without regard for race, religion, gender, appearance, or social status. She simply sees people.

Of course, I cannot know exactly what she experiences internally, and I never want to presume to speak for her. But from the world she has shown us, those divisions seem foreign.

Perhaps that is one of her greatest gifts.

In a world that teaches us to compare, compete, judge, and divide, she has taught me something entirely different.

Sometimes I think the lessons I hoped to teach her were never really mine to teach.

Perhaps she has been teaching me all along.