The Grief of the Unexpected Path

When you become a parent, you have all these hopes and dreams for your child's future. 

You imagine them growing up, finding their passions, achieving their goals. 

As mothers, we want to give our children every opportunity for happiness and success in life. 

But, as life often does, it throws you a curveball.

Six months ago, my world shifted when my oldest son was diagnosed as autistic at age 6. It wasn't a complete surprise - we had always known he was a bit "quirky" with an unpredictable temperament. But actually receiving the diagnosis was a profound moment that brought up so many emotions.

I’m rarely caught speechless, and this was an uncommonly quiet day.

Grieving Shattered Expectations

I want to preface this by saying – there's a chance this article will come off as selfish to some. 

How dare I have feelings that aren't toxically positive surrounding my son's autism diagnosis! The raw discussion of grief around a diagnosis that is not mine might be off-putting. It's just not the typical narrative. I’m trotting a different path today.

The range of emotions that come with something like this is messy and complicated. Putting on a relentlessly positive face about it all the time isn't doing anyone any favors, my son included. 

Grief is an incredibly powerful and complex emotion that most people associate with the death of a loved one. While that is certainly one of the most profound experiences of grief, it can actually stem from many different types of losses and life transitions.

At its core, grief is the natural human response to having your reality and expectations shattered. 

It's the deep sadness, emptiness, and emotional pain that comes when something precious is perceived to be taken away or forever altered. 

There is no "right" way to grieve either, nor a defined timeline (and for a type-A person like myself, I would have appreciated a playbook). 

It's an unpredictable, messy process as one works through the stages of grief: denial, anger, bargaining, depression, and eventually acceptance. 

Grieving is utterly exhausting and all-consuming at times.

I found myself grieving the loss of the future I had envisioned for my son. The expectations and assumptions I had made about how his life would unfold suddenly didn't apply anymore. 

I had to let go of that imagined path and open myself up to an entirely new, unknown future for him.

The grieving process hasn't been linear. Some days I accept his diagnosis and feel hopeful about his potential. 

Other days, I'm overwhelmed by the uncertainties and mourn the "normal" childhood I had assumed he would experience. 

I grieve the loss of seeing him hit typical childhood milestones without obstacles. I worry about the challenges he may face and how to best support him.

There are times it feels like his very childhood has been robbed from him by his condition. It's heartbreaking to watch my sweet boy grapple with such difficulties at such a tender age.

The Isolating World of PDA

To compound the grief, my son's specific diagnosis is pathological demand avoidance (PDA), an autism profile that doesn't fit into typical understandings of autism. His needs and behaviors are so counterintuitive that we often feel we don't belong, even within the autism community.

Learning about PDA opened up a new world of confusion, isolation, and unique grief. 

Why was he dealt this particularly arduous form of autism? Why does he resist anything that seems like a demand or expectation, no matter how reasonable? Why does he become so dysregulated over seemingly minor things? 

For his neurodiverse brain, these requests and demands are truly debilitating. 

Some days, I find myself mourning the more "typical" autism presentation that might have been easier to understand and access support for. With PDA, we are constantly second-guessing our approach, trying to navigate his needs without triggering a meltdown. The unpredictability is utterly exhausting for our whole family.

An Unanticipated Journey 

It's a heavy emotional burden to carry as a parent. 

But I've realized this grief is natural and doesn't make me selfish or bad. It simply means I have hopes for my child that are evolving in an unanticipated direction ordained by God.

We prayed fervently for this child, and God gave us an extraordinarily difficult yet remarkable young person to shepherd. Some days, I feel regret that we didn't know the challenging journey ahead of us. Other days, I'm in awe of my son's persistence, intelligence, and charm that shines through despite his struggles.

This is not the path I had mapped out for him or for our family. 

But it is our path.

One formed by a mixture of grief and gratitude, fear and hope, self-doubt and unshakeable love for our exceptional child that God has entrusted to us.

The Unexpected Path Leads to Profound Growth

This journey of parenting a child with autism and pathological demand avoidance has been one of the most challenging, gut-wrenching experiences of my life. The grief has cut deeply, shattering long-held dreams and forcing me to rebuild my reality from the ground up.

And yet, I've emerged from these depths of sorrow with greater inner reserves of resilience, compassion and unconditional love than I ever knew possible.

My son's condition has cracked my heart wide open, allowing me to feel the highest highs and lowest lows of the human experience with breathtaking intensity. I've plumbed the very depths of my soul only to discover incalculable wells of strength buried there.

While the path ahead remains cloaked in uncertainty, one truth has crystalized with clarifying power: My child's specialness does not lie in spite of his autism, but because of who he authentically is. His quirks, his obsessions, his beautiful neurodivergent mind - these are not obstacles to overcome, but the very essence of his remarkable spirit to celebrate.

This diagnosis has been an awakening, a rebirth into a reality much larger and richer than I ever could have envisioned. Though the grief still lingers, it is steadily giving way to awe - awe at my son's perseverance, at the complexity within every human mind, at the fortitude of a mother's love that knows no boundaries.

We did not choose this journey, but it has chosen us. And in surrendering to its great detours, I have been shattered, rebuilt, and reborn anew - a stronger, wiser, more tenderhearted version of myself capable of receiving life's unexpected paths as the sacred gifts they are.