Unspoken Grief: Extended Mourning in Parenting Children with Disabilities
As the school year draws to a close, many of us find ourselves attending graduation ceremonies, concerts, recitals, and end-of-year parties. While these events are often joyful, they can also be particularly challenging for parents of children with disabilities.
I experienced this firsthand yesterday at my second grader’s school concert. What should have been a proud, celebratory moment was unexpectedly accompanied by a wave of deep grief—one that lingered throughout the day and into this morning. It’s a feeling many of us know all too well: the unexpected emotional weight that comes during seemingly happy occasions or from well-intentioned comments that hit a little too close to home.
One of the first times I felt this kind of grief was when my son was about 4 or 5. We were at a restaurant when a kind woman approached me to say I was doing a great job. She told me her grandson was also autistic, and she was happy to see our family out together. She complimented how well-behaved my children were. It was a lovely gesture, and yet I found myself in tears for hours afterward. Her words made something painfully clear: my son’s disability was becoming visible. Until then, his differences had seemed age-appropriate. But as he grew older, those behaviors—those beautiful, unique expressions of who he is—began to stand out more, and the realization struck me with surprising force.
At the concert yesterday, I was overwhelmed by mixed emotions. I was incredibly proud of my son—proud that he stood with his peers, attempted the hand motions, and participated in the performance as best he could. I know how much work went into that moment. I know how hard he works. I know how hard I work—to advocate, to support, to make sure he is included and seen for all that he is. Since his diagnosis at 22 months, he has been in intensive ABA therapy. He is, without question, the hardest-working little person I know.
And yet, as I watched the other children read scripts, crack jokes, sing, and dance with ease, I couldn’t help but compare. That quiet comparison opened the door for grief again—a grief that sneaks in when you least expect it, even in moments of pride and joy.
This isn’t about not celebrating our children. It’s about honoring the complex emotions that come with parenting a child with special needs. The pride, the love, the fight—and yes, sometimes, the sorrow. We carry all of it.
Grief is typically associated with loss—a person, a moment, a dream. But for many parents of children with disabilities, grief takes on a different shape. It is not marked by a funeral or closure, but by an ongoing process often referred to as extended mourning or chronic sorrow. This grief isn’t a single moment in time—it unfolds in waves, sometimes triggered by milestones that never arrive, or by everyday encounters that underscore the difference between their child’s life and the expectations they once held.
Understanding Extended Mourning
Extended mourning is the emotional response to the realization that life is permanently different from what was anticipated. For parents, the birth of a child is usually accompanied by dreams of who that child might become—visions of first steps, first words, academic milestones, social achievements, independence. When a diagnosis enters the picture—be it autism, cerebral palsy, Down syndrome, a rare genetic condition, or any number of disabilities—those dreams may shift, fragment, or feel completely lost.
This doesn’t mean parents love their children any less. In fact, the depth of their love often intensifies the sorrow. They’re grieving not the child they have, but the life they imagined for that child—and sometimes for themselves.
The Milestones that Hurt
In typical parenting, a child’s achievements often bring joy and pride. For parents of children with disabilities, these same moments can sting—not because they are not proud, but because they are constantly reminded of what their child struggles with or may never do.
A school graduation ceremony might highlight the gap between their child and their peers.
A simple birthday party can evoke the pain of social exclusion.
Even well-meaning friends who gush about their child’s accomplishments may unintentionally trigger deep feelings of loss.
These aren’t one-time events. They recur throughout a child’s life, reigniting the mourning process again and again.
A Grief Without Closure
One of the most challenging aspects of extended mourning is its invisibility. Society often expects grief to follow a timeline and to eventually fade. But for parents navigating disability, the grief coexists with joy, love, and purpose. It’s possible to feel immense pride in a child’s progress and at the same time ache for the struggles they face.
Because this grief isn’t tied to a death, it is rarely acknowledged. Parents might feel isolated or judged for their emotions, especially when others say things like:
“At least it’s not worse.”
“You should be grateful—they’re such a blessing.”
“Everything happens for a reason.”
“Look at how far they’ve come”
While often well-intentioned, these phrases dismiss the complex reality of loving someone fiercely while also mourning the challenges they endure.
Reframing the Narrative
Some parents find healing in reframing their expectations. Rather than focusing on what was lost, they shift their attention to what is possible. This doesn’t erase the grief, but it can soften it. Many find new joys they hadn’t imagined—strengths in their children that surprise them, deep connections in disability communities, and a fierce advocacy spirit that reshapes their identity.
Others find comfort in rituals of acknowledgment—writing, therapy, support groups, or simply giving themselves permission to mourn. It’s not self-pity. It’s honesty.
Making Space for Grace
If you’re a parent walking this path, know this: Your grief is valid. Your love is not diminished by your sadness. Making space for both joy and sorrow is not only natural—it’s necessary.
If you love someone who is parenting a child with disabilities, offer your presence rather than your platitudes. Listen more than you speak. Don’t rush their process. Sometimes, the most healing thing you can say is: “I see you. This is hard. I’m here.”
Grief doesn’t always end. But with compassion, connection, and time, it can be carried more lightly.