Let’s talk about a topic that makes some people squirm, and for others, it’s the very thing they need to hear: grieving your child’s disability diagnosis.
Yep, I said it. And trust me, I know it’s a controversial one. Especially in the world of special needs parenting, where it seems like we’re supposed to be always strong, always positive, and always advocating. But here’s the thing—sometimes, you just need to grieve.
This topic came up the other day on the Facebook page, and I said, “It’s more complex than what can be tackled in a Facebook comment.” Which is true. So I thought I should address it in a blog post, and saw that today is Grief Awareness Day. So, I took that as a sign.
National Grief Awareness Day is observed annually on August 30th to raise awareness of the grieving process and how everyone copes with loss differently. The day also aims to educate people on how to support those who are grieving. It is not meant to specifically address death. Which is where I want to start.
What is Grief?
Grief is an emotional response to loss—any loss. It’s the deep, often overwhelming sorrow that accompanies the end of something meaningful, whether that’s a loved one, a relationship, or even an expectation of what life was supposed to be like.
At its core, grief is about adjusting to a new reality without something you deeply value or rely on.
Why Do We Tend to Associate Grief Only With Death?
We usually link grief with death because it’s the most universally recognized and socially accepted form of loss. Society has rituals, customs, and support systems specifically designed to help people mourn death, like funerals and bereavement leave. But when it comes to other types of loss—like a disability diagnosis—we often lack those same frameworks for understanding and support.
This narrow view of grief can make other losses feel less valid or recognized, leaving people feeling misunderstood or unsupported when they express grief over a non-death loss.
Here are a few examples of non-death losses that people may experience:
- Loss of Health: Whether it’s due to a chronic illness, injury, or aging, losing the physical ability or good health one once had can trigger significant grief. It’s mourning the loss of independence, mobility, or a pain-free life.
- Divorce or Breakup: The end of a relationship, particularly one that was long-term or deeply meaningful, can feel like a death of sorts. It involves grieving not just the loss of the person, but also the shared dreams, plans, and identity that came with the relationship.
- Job Loss or Career Change: Losing a job or being forced to change careers—especially if it was unexpected—can bring about grief. It’s not just the loss of income, but also the loss of professional identity, daily structure, and purpose.
- Estrangement from Family or Friends: When a relationship with a close family member or friend breaks down, it can feel like a profound loss. This includes grief over the absence of connection, support, and the memories of what the relationship once was.
- Loss of a Home or Living Situation: Moving away from a home, neighborhood, or city that holds sentimental value can cause grief. This might be due to financial hardship, natural disaster, or other circumstances, and involves grieving the loss of comfort, community, and a sense of belonging.
- Loss of Dreams or Expectations: This includes grieving the life you thought you would have—the career, the children, the milestones that didn’t happen. For parents, it can mean grieving the vision of what they thought their child’s future would look like.
- Empty Nest Syndrome: When children grow up and leave home, parents may grieve the loss of daily interactions and the role they played in their children’s lives. It’s the end of an era and a shift in family dynamics.
- Retirement: While often seen as a joyful time, retirement can also bring grief. Many people grieve the loss of routine, status, and the social connections tied to their careers.
- Loss of Faith or Belief Systems: Losing a long-held belief, faith, or spiritual connection can be deeply disorienting. It often involves grieving the loss of community, identity, and the sense of meaning or purpose that faith provided.
- Pet Loss: While not technically a non-death loss, it’s often overlooked as a form of grief. Losing a pet can feel like losing a family member, with all the associated sadness and sense of loss.
Each of these types of grief can be just as valid and profound as grieving a death, yet they often lack the same social recognition or support. Then again, our “grief support network” available to most people is hardly adequate. I don’t mean to imply that it is.
Basically you’re expected to grieve through the funeral process and whatever other “business” needs to be handled, like cleaning out a house…and then get on with your life. “Get over it” right?
But grief doesn’t work that way.
How Does This Affect Grieving a Diagnosis and How It’s Perceived?
When grief is only seen as appropriate in the context of death, grieving something like a diagnosis can seem confusing or even unacceptable to others. Parents grieving a child’s diagnosis may feel guilt or shame for their feelings, worried they’re being judged for not being grateful or optimistic enough.
Because there isn’t always a tangible loss—like a life—we tend to downplay the emotional impact of diagnoses. This lack of recognition can make parents feel even more isolated, as if they’re not allowed to mourn the life they expected for their child or themselves.
The result? They may suppress or deny their grief, which only makes it harder to heal and adapt.
The Diagnosis Bombshell
When I hit the 20-week mark in my pregnancy with K, I distinctly remember the conversation as I declined all prenatal testing. “No thanks, won’t matter either way!”
And the doctor said, “Maybe not, but it will give you time to grieve the loss of your typical child and prepare for life with a special needs child.” In one ear and out the other, went that advice!
Oh how naïve I was!
Because just about a year later, we did get a significant diagnosis. And I cried. Oh lordy did I cry! For days on end. At random times I’d have to excuse myself at work. I lost like 30 lbs too.
Boom. Just like that, life as I knew it shifted. All our hopes and dreams and wishes for this child were gone.
For some parents, it’s a devastating, heartbreaking moment, especially when the diagnosis involves a severe health condition—something that could shorten your child’s life or drastically limit their quality of life. In those moments, it feels like you’re grieving the life you thought your child would have. And honestly, who wouldn’t grieve that?
But then there’s the other side. What if the diagnosis is something like ADHD, dyslexia, or autism? Conditions that, while still challenging, aren’t life-threatening and often come with unique strengths.
Society and, yes, sometimes even other parents, will tell you: “Don’t grieve. Celebrate! Neurodiversity is beautiful!” And you know what? It is. But, does that mean you don’t get to grieve?
As it turns out, the more involved I became in the disability community, the more I heard this. The more I was shamed. “Imagine! Grieving your child’s existence!” In no uncertain terms I was told that I was a terrible, horrible, ableist person who hated their child. This was largely coming from people claiming to be autistic. So, I listened.
And, I turned off the grief. Suppressed it, buried it, and browbeat others who dared to say they are sad about their child’s diagnosis. How dare they! Why aren’t they also listening to autistic people?!
And now I’ve come full circle.
The Two Sides of Grief: Health vs. Neurodivergence
Let’s tackle this head-on. If your child has a serious health issue, grieving feels justified, expected, even supported. But when it’s a diagnosis like ADHD or autism, some parents feel shamed for admitting they’re struggling.
Sure, they’re the same child. But it’s not about them changing. It’s about your dreams and expectations changing. It’s about the worry that replaces the hopes you had—worry about their future, their independence, their happiness. Worry about how they’ll be treated by a world that isn’t always kind to those who are different.
Social Media: The Judgment Hall
Enter social media, where everyone’s an expert and no one holds back. I’ve seen parents post about their grief, only to be met with comments like, “You should love your child just the way they are!” or “How dare you grieve your child’s autism!”
Seriously? How did we get here, where even our grief is policed?
The reality is, special needs parenting isn’t a one-size-fits-all journey. Some of us are grappling with seizures, surgeries, and life-threatening conditions. Others are dealing with meltdowns in the grocery store and IEP meetings that feel like battlefield negotiations.
Both experiences are valid, and both involve grief in their own ways.
Critics Say It’s “Your Loss, Not Theirs”
Critics argue that grieving a child’s disability diagnosis is about the parent’s loss, not the child’s. They say, “Your child is still here, still themselves. You’re grieving for an imagined future, not the real one.” To some extent, they’re right. When parents grieve a diagnosis, they’re often grieving their own dreams, expectations, or the life they envisioned for their child. They mourn the “what could have been” instead of celebrating “what is.”
But let’s get one thing straight: this criticism misses the mark. Grief is inherently personal. Yes, parents may be grieving their own sense of loss, but that doesn’t make it any less valid. Grief isn’t selfish; it’s a natural human response to change and loss. When a child is diagnosed with a disability—whether it’s a severe health issue or neurodivergence—it reshapes the parent’s world, too. It’s not just the child’s future that’s altered; it’s the whole family’s future.
Why Dismissing This Grief is Harmful
By saying a parent shouldn’t grieve because the loss is “theirs” and not the child’s, critics invalidate the real and challenging emotions that parents experience. This kind of judgment implies that parents have no right to feel sadness, disappointment, or fear—and that’s simply not fair. Telling someone how they should or shouldn’t feel is a form of emotional gatekeeping that can make them feel even more isolated and misunderstood.
Grieving the loss of expectations doesn’t mean a parent doesn’t accept or love their child as they are. It just means they’re processing a shift in their reality—a reality that might involve daily struggles, systemic barriers, or a future that feels uncertain.
Understanding That Both Can Be True
Parents can simultaneously grieve and love fiercely. They can mourn the life they imagined for their child while also embracing and celebrating the unique person their child is. Grieving isn’t a statement of rejection or dissatisfaction; it’s a step toward acceptance. It’s making space for all the emotions that come with this journey—including hope, joy, and, yes, grief.
So, to those critics, I say: Let parents grieve if they need to. It’s part of the process, not a betrayal of their child. And in allowing space for grief, we make room for growth, resilience, and ultimately, a deeper, more authentic kind of love.
Grief Comes and Goes
Grief isn’t a one-and-done deal. It doesn’t show up, do its damage, and leave quietly. It ebbs and flows, comes and goes—sometimes when you least expect it. You might think you’ve made peace with your child’s diagnosis, and then, out of nowhere, a new challenge or a milestone not met brings that grief rushing back like a wave.
One day, you’re feeling empowered and hopeful, and the next, you’re back in that dark place, mourning the dreams that didn’t come true.
This is the nature of grief, especially with an ambiguous loss. It’s not a linear process; it’s cyclical. Grieving a disability diagnosis is different because it’s not a loss with clear closure.
It’s an ongoing process—one where new stages of life, new struggles, or even a casual comment from a stranger can reopen that wound. I’ve been experiencing this a lot lately since K recently turned 18. There have been many triggering moments as we do the “adult stuff” we have to do and as my friends’ kids of similar age are achieving typical milestones.
And guess what? That’s okay. It’s normal.
I’m done apologizing for feeling sad over these losses. And I’m done over explaining myself and trying to prove to others that I love my child.
It’s Okay to Grieve an Ambiguous Loss
Ambiguous losses—like a diagnosis that changes the course of your child’s life—can be particularly tough. There’s no clear beginning, middle, or end to this type of grief. It’s messy, unpredictable, and, in many ways, more challenging to process than grief tied to a definite event.
Allow yourself to feel that sadness, that frustration, that longing for what might have been. You’re not wrong for feeling it, and you’re not alone in feeling stuck at times.
Recognizing that this is a valid type of grief can be incredibly freeing. It allows you to give yourself the grace to feel the full spectrum of emotions that come with raising a child with a disability. You don’t have to rush to acceptance, slap on a happy face, or pretend you’re okay when you’re not.
You can be in both places at once—grieving and growing.
But Don’t Get Stuck There
However, while it’s essential to allow grief to run its course, it’s equally important not to let it define your journey. Getting stuck in grief can prevent you from seeing the strengths, joys, and unexpected gifts that come with your child’s diagnosis. It can keep you in a mindset of “what could have been” instead of embracing “what is” and “what could still be.”
Staying stuck in grief can also make it harder for you to advocate effectively for your child’s needs or to find the joy in their victories—big or small. It can make you feel powerless in a situation where, more than ever, you need to feel strong. Remember, grieving is a step on the path to acceptance, not the end destination.
Allow the waves of grief to come and go, but try not to let them drown you. Reach out for support, find your community, talk to a professional if you need to. Because while grief is a part of this journey, it shouldn’t be the whole journey.
The Science of Grieving
Grieving a child’s diagnosis isn’t just an emotional response; it’s a psychological process. In a 2018 study by Boston University, researchers found that parents of children with disabilities often experience a form of “ambiguous loss”—a loss that isn’t clear-cut like death, but instead, a loss of the imagined future for their child.
The study also found that acknowledging and processing this grief can be crucial for parental mental health and for building resilience.
But in the age of Instagram and TikTok, admitting you’re grieving can feel like stepping into the judgment hall. You’re told to “focus on the positives,” “reframe your mindset,” or the ever-popular, “others have it worse.”
And while there’s merit in staying positive, there’s also value in saying, “This is hard, and I need to process this.”
Real Talk: It’s Okay to Grieve
Here’s the bottom line: Grief is not an admission that you love your child any less. READ THAT AGAIN.
It’s not an indication that you’re not up to the challenge. It’s simply a part of the journey. And guess what?
It’s a journey that’s yours to walk, stumble, sprint, or crawl through at your own pace.
Grieving doesn’t mean you don’t see the strengths in your child’s neurodiversity. It doesn’t mean you don’t celebrate their milestones. It simply means you’re human.
It means you’re grappling with a reality that’s different from what you expected. And that’s okay.
When Grief Feels Like Rejection to Neurodivergent People
I hear you—loud and clear. For many neurodivergent individuals, knowing that their parents grieved their diagnosis can feel like a punch to the gut (based on what I read online). It can feel like their very existence is somehow a disappointment, like they’re less than or not quite enough just as they are.
And that hurts. It can feel like a rejection of their true selves—the parts that make them unique, creative, insightful, and yes, different.
If you’re a neurodivergent person feeling this way, please know that your feelings are valid. It makes sense that you’d feel unwanted or unaccepted if the people who are supposed to love you unconditionally seem to mourn a part of who you are. But there’s an important distinction here: most parents who grieve are not grieving you.
They are grieving the expectations and dreams they had—often because they love you so much, not in spite of it. They may be grieving the challenges you will face in a world that isn’t always kind or accommodating to differences.
Grieving Doesn’t Mean Rejecting
Here’s the thing: grieving a diagnosis doesn’t mean a parent is rejecting their child or wishing they were different. It’s more often about the parent processing a shift in their reality—one that includes new fears, challenges, and uncertainties.
It’s about coming to terms with what their child’s path might look like in a world that still has a long way to go in terms of understanding and acceptance.
It’s okay for parents to feel sadness or worry about the obstacles their child might face, and it’s equally okay for neurodivergent people to feel hurt or offended by that.
But know this: parents can grieve and still be proud of you, still love every part of who you are, and still fight fiercely for your right to thrive just as you are. In many ways, their grief is an expression of love, of wishing they could make the world softer and kinder for you, even if they don’t always get it right.
Opening the Door to Empathy and Understanding
What if we could see this grief as part of a process, one that leads to acceptance, understanding, and advocacy? What if parents could openly talk about their grief without fear of judgment, and neurodivergent people could express how it makes them feel?
Maybe then we could find a middle ground where both sides feel heard and validated.
At the end of the day, we’re all navigating this messy, complex journey called life. It’s okay for parents to grieve, and it’s okay for neurodivergent people to feel hurt by that grief.
But by opening up this conversation, we can move toward deeper understanding and love—a place where everyone feels truly wanted and accepted, just as they are.
Ambiguous Loss
Dr. Pauline Boss, a leading expert on ambiguous loss, argues that “finding meaning” in the loss is a critical step toward healing. She emphasizes that society often does not acknowledge these types of losses, which makes the grief feel even more isolating. Her advice?
Allow yourself to grieve without apology. Because in doing so, you open up space to heal, adapt, and ultimately, to find joy again—however it looks for you and your child.
Siblings of Disabled Kids and Grieving
Let’s not forget about the siblings—the ones who often get overlooked in the narrative of disability. While parents are trying to navigate this new reality, siblings are also processing their own form of grief.
They’re adjusting to the sudden shift in family dynamics, grappling with feelings they might not fully understand, and mourning their own losses—whether it’s the attention they once had, the sibling relationship they imagined, or the “normal” childhood they thought they’d have.
Ours isn’t a sudden shift–B doesn’t know life any other way. Still, he can see what his friends are doing. And that’s things like being driven places by your older sibling, shooting hoops with your sibling, playing video games with your sibling.
Those things are never going to happen in this household. Yes, we adapt activities and they’ve adapted their relationship. But a teen wanting to play video games with his brother is a normal desire.
Siblings might feel a mix of emotions: guilt for feeling jealous of the extra attention their sibling receives, resentment over the disruptions in daily life, or confusion about their role in the family. They may grieve the loss of the sibling they thought they’d have—the one they could play sports with, confide in, or grow up alongside in the usual way.
These feelings can be just as powerful and valid as the grief felt by parents, but siblings often don’t feel they have the right to express them.
Creating Space for Sibling Grief
It’s crucial to create a safe space where siblings can express these feelings without fear of judgment or guilt. Just like parents, siblings need to know it’s okay to feel sadness, anger, or even frustration. They need to know it’s normal to have mixed emotions about their brother or sister’s diagnosis and that it doesn’t mean they love them any less.
Encouraging open conversations can help siblings feel heard and understood. Simple questions like, “How are you feeling about everything?” or “Is there anything you wish we could do differently?” can go a long way.
This validation helps siblings feel that their emotions matter too—that they don’t always have to be the “strong” one or the “understanding” one.
Balancing Grief with Resilience
It’s also important to help siblings balance their grief with a sense of resilience. Siblings can play a unique role in the family dynamic, becoming natural advocates and allies. They often develop a strong sense of empathy, patience, and understanding.
But they shouldn’t be expected to shoulder adult-sized responsibilities or emotions. They need time to just be kids, to have their own experiences, and to grieve in their own way and time.
Grief will come and go for them, just like it does for parents, and that’s okay. Supporting siblings in processing their feelings can help ensure they aren’t getting stuck in resentment or guilt but are growing into their own identity with a balanced perspective on their sibling’s disability.
At the end of the day, siblings are an integral part of this journey too, and their grief, joy, and growth are just as important as everyone else’s.
Let’s Stop Shaming and Start Supporting
So, how about we stop with the shame game? How about we let parents have their feelings without making them feel guilty for it?
Because whether you’re grieving a health condition or a neurodivergent diagnosis, the feelings are real. And they’re valid. And they’re yours.
Your Story is Your Own
You’re not alone in this. Whether you’ve been shamed for your grief or found a community that lifts you up, your journey is your own. And guess what? I’m here for it. All of it.
So, go ahead—grieve if you need to. Celebrate if you can. And remember, there’s no wrong way to do this.
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