Understanding the Grief That Comes With Parenting a High Needs Child

**You can also listen to this in audio format only on The Regulated Mother Podcast on Apple or Spotify.

**Below is the blog article for easy reading.

Grief Lives in the Body

There is no shortage of grief when you’re parenting a hypersensitive, high-needs child.

Grief for how hard it is for them. Grief for how hard it is for you.

In Part 1 of this 3-part series, we explored the many invisible losses we face— the loss of identity, the loss of dreams, the loss of control, connection, joy, and freedom.

But after the loss comes something even harder to face: The grief. The heavy, stuck, helpless feeling that lives in your body.  Because grief isn’t just sadness.  It’s a nervous system process.  And when we understand that, it starts to make sense why everything feels so hard to move through.

In today’s post/episode, we’ll explore:

• The grief that most parents of high-needs children carry without realizing it — grief for the loss of the life you imagined, the connection you hoped for, and the ease you thought you’d have.
  
  
• How that grief shows up in hidden ways — in your body, your thoughts, and your parenting — and how, once you can finally name it, you can begin to work with it.
  
  

Because unspoken grief keeps your nervous system stuck.  But understood grief can start to move.

When I Realized I Was Grieving

I remember sitting in a training years ago where they were talking about grief. Someone listed the five stages of grief that a person might go through when someone dies. And I remember thinking… Wait a second. No one died… but I’ve felt every single one of these.  And it was like something clicked into place for me. For the first time, I felt seen. I could understand why I was feeling the way I was feeling.

Parenting my high-needs child at the time was so hard—I felt like my life was falling apart.  I didn’t want this life… I didn’t want to be his mother anymore.  I felt like I was dying inside.  I was cycling between anger, depression, and doing anything I could to try to change him.  And I carried so much shame for feeling this way as a mother.

But understanding grief—because there is no shortage of grief in parenting a high-needs child, and it always shows up—helped me to let go of some of that shame.

That’s why I want to bring these stages to you now—so that if you’ve felt any of these things, you can name it and allow it.  And understand that you’re not broken.  You’re not a bad mom who’s not trying hard enough.  You’re a mom who is grieving… and this makes sense given our circumstances.

The 5 Stages of Grief 

According to Elisabeth Kübler-Ross, there are five stages of grief. These stages aren’t linear. And you don’t “graduate” out of them. But understanding them helps us meet ourselves where we are, and know that what we experience is expected.

Keep in mind these stages were created for those who lost a loved one… But I’ve adapted them here to reflect what it’s like to parent a high-needs child—because the grief is real, even though it’s often invisible.

 1. Denial

“Denial helps us to survive the loss. It’s a defense that buffers the initial shock.”

In parenting, denial can sound like:
“This is just a phase—they’ll grow out of it.”
“I just need to try harder and things will get better and be normal.”
“It’s not really a disability—they just need more discipline or the right environment.”

It’s common to deny the diagnosis—or to minimize the reality of how challenging it is—because it feels too overwhelming to accept.

It often shows up as over-researching, over-efforting, or staying in your head to avoid the heartache. It’s your brain’s way of buying time—because accepting what’s happening all at once would feel like too much.

2. Anger

“Anger is a necessary stage of healing. Underneath it is pain. Anger is an anchor, giving you temporary structure to the nothingness of loss.”

In parenting, anger might sound like:
“Why is this happening to me?”
“Why can’t they just do better?”
“Why is this so much harder for us than other families?”

It might be directed at your partner, your child, yourself, or systems that have failed you.

But underneath that anger is usually deep powerlessness—because no matter how much you try, you can’t control how your child is wired or change the reality of their needs. This is your nervous system in fight mode—trying to protect you from helplessness and vulnerability.

3. Bargaining

“We try to negotiate with loss. If we do better, maybe the pain will stop.”

In parenting, this can look like:
“If I regulate better, they’ll finally calm down.”
“If I find the perfect therapy or medication, this will all go away.”
“If I sacrifice everything, maybe things will be more normal.”

It’s also common to bargain with the Universe or God:
“Please just make this easier, God, and I promise I’ll do better… I’ll be more patient… I’ll never complain again…”

Bargaining gives a false sense of control—but underneath is fear that we’ll never feel safe, secure, or successful again.

4. Depression

“This stage feels like it will last forever. It's not a sign of mental illness—it’s a natural response to loss.”

In parenting, this might feel like:
“I can’t do this anymore.”
“What’s the point?”
“This isn’t the life I wanted.”

It may show up as withdrawal, numbness, fatigue, and a feeling of being shut down. This is your nervous system in freeze or collapse. But depression is also a protection against feeling the pain of the losses that you’re experiencing.

5. Acceptance

“Acceptance is about acknowledging what is—and learning to live in a way that integrates the loss, rather than resists it.”

In parenting, it might sound like:
“This is our life—and we’re still a family, worthy of love and joy.”
“It’s not what I expected—but I can build a life that works for us.”

It doesn’t mean giving up hope.
It means giving up the fight against what is. Letting go of resistance.
This is where regulation becomes more available.
You begin to move with your reality, instead of against it.

The Grief That Doesn’t End — Ongoing Loss in Parenting

One of the hardest parts of this grief is that it doesn’t just happen once. It happens again and again.

There’s a name for this: ongoing loss, also called chronic sorrow—a term first introduced by Simon Olshansky to describe the repeated grief experienced by parents of children with disabilities.

It’s the kind of grief that revisits you every time your child struggles in a place others thrive. Every time they’re excluded from something you thought they’d be part of. Every time they fall behind developmentally, or you watch their siblings adapt in ways they can’t.

This grief doesn’t resolve like a single event—it’s cyclical. And because of that, it can feel like you’re doing something wrong. Like you “should be over it” by now.

But you’re not doing anything wrong. Your nervous system is simply responding to the reality that you’re living in a continuous experience of loss—loss that evolves as your child grows, and as new challenges arise after progress was made.

That’s why sometimes, out of nowhere, you feel like you’re drowning again.  But you’re not back at square one…You’re revisiting the grief—because a new layer of it just arrived.

Ambiguous Loss — The Grief That Has No Closure

Alongside ongoing loss, there’s another grief that’s even harder to name—ambiguous loss. This term was coined by Dr. Pauline Boss, who studied the unique grief that occurs when there’s no closure.

“Ambiguous loss refers to a loss that is unclear, without closure, and often lacks a definitive ending. It can be characterized by either physical absence with psychological presence (like a missing person) or physical presence with psychological absence (like someone with dementia, a chronic illness, or mental illness).”

So this may not seem relatable at first, but here’s how it is: It’s the grief we feel when something or someone is still here, but not in the way we expected.

When your child is right in front of you—but not able to connect, communicate, or relate in the way you’d always imagined.
When you’re living the life of a parent—but it looks nothing like the parenting you dreamed about.

Ambiguous loss is complicated. There’s no funeral, no ritual, no support. So it often goes unacknowledged, which makes it harder to process.

But when we name it, it gives us the chance to:

• Validate our experience
  
  
• Acknowledge what we’ve gone through
  
  
• And finally begin to grieve it
  
  

And that grief—once it begins to move—can give us space to start feeling again.
It can help us understand why it makes sense that we feel this way.
And maybe, just maybe… give us a chance to begin to heal it.

The Grief of Giving Without Receiving — Loss of Reciprocity

There’s another form of grief that’s rarely talked about—but it lives in the hearts of so many parents I work with.

It’s the grief of not receiving back the emotional connection you long for. Of giving everything you have—your love, your energy, your patience—and not getting the affection, attunement, or closeness that you hoped for in return.

This is especially common when your child has nervous system differences or diagnoses that impact connection—like autism, PDA, trauma histories, sensory processing differences.

And it’s not your child’s fault.
And it’s not your fault either.
But it feels like a real loss.

We are biologically wired for reciprocity. We expect that our love will be mirrored. That our care will create connection. That our child will look into our eyes and light up. That we’ll have shared joy and mutual delight.

And when that doesn’t happen—at least not in the way you imagined—it can feel like a part of you is grieving something invisible.

It doesn’t mean you love your child any less.
It means you’re human.
And it’s okay to grieve this too.

The Grief of Isolation and the Loss of Community

And then there’s the grief of not fitting in. Of feeling like you and your child don’t belong in the places other families gather.

You stop going to birthday parties.
Your child is excluded from school or activities.
Friendships change. Support falls away.

This kind of grief is rarely named.
It’s a loss of community. Of visibility. Of understanding.

And it can make you feel painfully alone.
But again—you’re not alone in that feeling.
And the grief is valid.

But some grief isn’t just about what’s happening now…
It’s about what it awakens in you from the past.

When Loss Reopens Trauma from the Past

Today’s grief is often layered.

There’s the visible layer—your child’s meltdowns, school refusals, aggression, withdrawal.
But underneath that is another invisible layer—what those experiences awaken in us from the past.

A child’s violence can feel intolerable not just because it’s hard—but because your nervous system remembers what it was like to feel unsafe as a child.
Your child’s rejection or withdrawal might not just sting in the present—it might reawaken the wound of being unseen or unloved as a child.

When we can’t fix or control what’s happening now, it can bring up memories of helplessness from our own childhoods.

That’s the deeper truth:
What feels like grief in the present can actually be our nervous system bringing up old pain from the past that never got to be processed.

So when we feel overwhelmed, hopeless or really sad now, it may not just be about what’s happening in front of us—but everything it’s touching underneath.

The Shame-Grief Loop

And when that unprocessed pain surfaces—so does shame.

Grief says: “This is hard.”
Shame says: “You’re failing.”

Many mothers get caught in this loop:

• You grieve what’s hard
  
  
• Then shame rises up for feeling grief at all
  
  
• So you suppress it
  
  
• Which intensifies the grief
  
  

But grief is not a sign of weakness.
It’s a sign that you love. That you care. That you’re impacted.

The more we name the grief, the less space shame takes up.

Anticipatory Grief — The Fear of What’s to Come

Sometimes, the heaviest grief isn’t about what’s happened—
It’s about what might never happen.

The milestones you fear your child won’t reach.
The future you imagined but can no longer count on.
The ache of uncertainty.

This is called anticipatory grief—a term originally used in hospice care to describe grieving before a loss has occurred.  It’s grief for a future that feels fragile.

It’s why you might feel anxious even on “good days.” Because your nervous system is bracing.

And naming this layer matters too. Because this fear and the grief that goes with it can leave you pretty dysregulated and not able to stay in the present with your child.

From Breakdown to Breakthrough

As you can see, the grief you carry can be pretty loaded.
It creeps up on you and hits you before you even know it.
It masks itself automatically and gets buried…
But your nervous system takes the brunt of it.

And this unprocessed grief can keep your nervous system stuck cycling between Fight/Flight and Freeze/Shutdown.

It is painful to feel all these losses and the grief that goes with it.
But that pain is also a doorway.

A chance to meet what’s been buried.
A chance to finally release it.

And when we grieve both the present and the past—and acknowledge the future we may not have—
we stop seeing this experience as one long breakdown…
and start seeing the potential for breakthrough.

Practice — Being With Grief in Your Body

I want to invite you into a short reflection. Because when we bring grief out of the shadows—when we give it space to be felt—we begin to work with it instead of against it.

So take a moment, right now, to come back into your body.
If it feels safe, place your hand on your heart or your belly.
Take one slow, gentle breath.

And ask yourself:

• What have I lost?
  
  
• What grief might still be living inside me—unfelt, unspoken, unseen?
  
  
• What part of me might be asking to be witnessed, not fixed?
  
  

And when you feel the grief…
Can you be present with it, even for a few moments?
Can you bring a compassionate feeling toward it and place a hand on the part of your body that feels it?

Notice how you feel this grief in your body.
Notice if the tears want to come and be released from your body.

And if it feels like too much, that’s okay…
You can bring yourself back to the present and safety by noticing and naming 5–10 things in the room around you and feeling your feet on the floor.

You don’t need to rush healing this grief.
Just feel yourself here, in this moment.
Let it be okay to feel.
Let it be okay to not feel.
Whatever is here is welcome.

This is how grief begins to process.
Bit by bit.
Breath by breath.
With compassion.

What Comes After the Grief

In Part 3 of this podcast series on loss, grief, and growth, we’ll talk about what comes after the grief.

How trauma and loss—when met with compassion—can become a catalyst for growth.
And how this parenting journey—while painful and unpredictable—can actually lead us into a life that’s more aligned, more meaningful, and more honest than the one we were taught to chase.

We’ll explore post-traumatic growth, nervous system resilience, and what it means to come home to yourself—even when nothing around you looks like you imagined.

If this episode spoke to you, please leave a comment and let me know, and share it with others who could use this understanding too.