Pandemic of nervous systems in crisis

The Shadows of Sorrow: Understanding the Endless Cycle of Grief and Trauma in Families Living with Disability.

To me, grief and trauma is watching the spark in someone’s eyes go out.

It is the painful transition of watching a capable, vibrant young person fade into a shadow of themselves. It is crying for hours or shutting down entirely, no longer able to smile an authentic, full-faced smile. It makes a person quick to anger and quick to cry; disconnected, isolated, and no longer recognizing their own reflection. It steals the capacity for joy, leaving a heaviness that sits unbudging, relentless, and suffocating.

An example most people can relate to is a death in the family, like many, I watched this happen to my own mother.

She used to love cooking; it was her passion, something that brought her immense joy. But then, the turning point came. My first-born child, her grand-daughter died soon after birth. The depths of grief we all experienced for years was crushing. Then, within just 18 months, my mum's younger sister died suddenly of an incredibly rare, aggressive cancer.

After that, my mum's smile and her health were never the same. We often talk about how the body holds trauma and grief when we don't process it emotionally. But how can one truly process grief that intense and feel like they can survive? How do you heal when the trauma causing that grief is your everyday experience, something that feels entirely endless?

Every day in my clinic, I listen to mothers who sit in trauma, a cause rarely if ever recognised. They are grieving the lives they realized they cannot have, raising children with severe disabilities, and carrying an unimaginable weight.

Mothers of children with severe physical disabilities, like cerebral palsy may receive occasional drops of compassion, but largely, they are shunned. It is as if their child's condition is contagious. They sit through the trauma of watching their child be treated as less than human during medical interventions. They are never able to just "be a mum" because they must constantly act as the therapist and the nurse. Slowly, they lose touch with friends and family, becoming entirely isolated by fatigue and sorrow.

Then there are the parents of children with severe disabilities causing behavioural disturbances. Instead of support, parents are met with blame and criticism. They are told they aren't good enough. They are told their child would be better if they were just a "good mother," or if they were "harsher" or “if they would just say no more’’, all while they watch their child lose themselves to severe anxiety and endless meltdowns.

Largely trapped, unable to leave the house or invite anyone over for fear of judgment or exacerbating their child's behaviour. Feeling powerless, seeking help and so often met with blame and not given the tools or strategies, yet told their child is solely their responsibility.

The systems designed to help them fail them repeatedly; Doctors who don't truly understand would rather avoid being confronted by their own humanity when they don't have the answers. Services reject them, putting them in the "too hard basket." Schools place the burden of blame squarely on the mother: “If only you would do X, then he would do Y.” There is no real understanding, and no real desire to listen, to learn, only a desire to have it fixed or send them away from school.

Meanwhile, at home, this parent walks on eggshells. Their life is a tightrope made of meltdowns, harsh words, criticism, and profound isolation.

This relentless stress fractures the home. The other parent goes off to work, if they’ve stuck around. They desperately want to fix it, to help, but feeling powerless and frustrated, they too eventually shut down. Often without stopping long enough to just listen, to step into their partner’s shoes long enough to truly understand their lived experience.

Often the parental relationship breaks down entirely because there is simply no time or energy left to nurture it. If that time ever does come, the inability to communicate, the lack of mutual understanding, and years of pent-up resentment overwhelm any hope of connection. The shared experience of raising a family is no longer truly shared.

Desperate, these parents seek support online, only to be told by well-meaning but ignorant people that they "just need to do a particular parenting course." This only reinforces the shame, echoing the lie: if only she could be a better parent. As if a stock-standard parenting course could give the specific guidance needed to calm a severely dysregulated nervous system. Or, they find what seems like a group of people who get it, who tell them their child’s nervous system is dysregulated and to change their approach so they have no demands placed on their child anymore, only find this works for a while but eventually the behaviour becomes worse, and often violent, when they try to reinstate some form of a boundary.

The Truth of the Nervous System

There is no amount of tears this mother can shed, whether in my waiting room during the 50 to 60 minutes she gets, almost to herself, or in a rushed 10-minute shower at home that can make up for the years of punishment she has endured. Now a shadow of her former self, she is left wondering if she will ever be good enough to make her child’s life, and her own, better.

Sadly the reality is that this child's behaviour cannot improve while their nervous system is in crisis. And their nervous system has no hope of getting out of crisis while their parent's nervous system is also in crisis. This incredible parent cannot regulate their own nervous system while they are so utterly isolated, unable to access real support, and managing a daily crisis. And so, another day goes by, and another.

I want you to know, I See You.

You come and go from my waiting room, and I live in the hope that little by little, we can make a difference. I try to hold onto some of the pressure for you, as much as I possibly can. In the meantime, I hope you feel a little less alone.

I think of you when I walk into my own home and wait for the next meltdown as we move through our evening routine, approaching teeth brushing or the final bathroom stop before bed.

I think of you when I wake in the morning, hoping that we, in our house, can move through the morning with minimal meltdowns.

And I think of you as I drive to work, striving to arrive as regulated as possible, so I can share some of that calm with you and your child. I do it all in the hope that, once again, I can make your life just a tiny bit easier.

In the hope, you feel a little less alone.

I see you and I hear you.