It has taken fourteen years for the ground to stop moving.
Not to become solid — just steady enough that I’m no longer bracing every time I stand.
For most of that time, I thought nothing was being built. I thought we were failing, falling behind, going in circles while everyone else moved forward. Only now can I see that foundations were forming all along — quietly, invisibly, without recognition. No one else cared to notice.
The PDA journey doesn’t unfold as a single story. It arrives in waves, each one named differently, each one asking you to grieve what you thought you understood.
First it was global developmental delay. Then, a year later, autism. Years after that, ADHD. And finally — much later — PDA.
Each label brought a brief sense of clarity, followed by deeper confusion. Each time, we were told this would explain things. Each time, reality exceeded the explanation.
What no one prepares you for is the cumulative grief — the way loss repeats itself under different names. The way acceptance is not a destination but a loop you circle endlessly. Grief. Adjustment. Change. Hope. Loss again.
From the outside, it might look like persistence. From the inside, it feels like being trapped on a merry-go-round you never chose to board.
I sent my child to school alert, open, ready. Slowly, he was returned to me collapsed inward — not injured in ways anyone could see, but wounded in places that mattered. The pain he carried had no language. There were moments when he wanted pain to be visible, simply so it could be acknowledged.
I remember one afternoon finding my boy curled inside a red swimming poncho, unable to make it to a Scouts trip he had been excited about all week. Even when his leader phoned, he could not speak. At the time I did not understand what I was seeing. I only knew that something was slipping beyond my reach.
The hardest part was that he never complained. He never told me he could not continue. If anything, he kept trying. Looking back now, I think he would have kept going long after it stopped being safe. That was when I knew the cost was too high.
I removed him from school. We began home education. I believed — desperately — that this would be the turning point. Instead, we burned out.
We became locked out of the world while the world continued to demand access to us. Even when everything else shut down during lockdown — when society finally slowed — we remained excluded. The world came to our level briefly, and then moved on again, leaving us where we had always been.
Three tribunals followed. Eventually, EOTAS — Education Other Than At School — was secured. Two years later, there was still no provision. The system had ticked its boxes. Our lives remained unlivable.
And the isolation — the isolation is breathtaking. Not just from institutions, but from places you expect to belong. Support groups that speak of coping while we could not manage the simplest tasks. Parents who functioned — who could leave the house, organise appointments, advocate publicly — while we were barely surviving.
We kept trying to belong to spaces that were never built for families like ours.
Seven years later, CAMHS — the Child and Adolescent Mental Health Service — tell us there are no significant mental health concerns. I am grateful for that. Truly. But I sometimes wonder what people think happened in those seven years.
Healing did not happen by accident. We asked for help when the crisis was forming. There was little support available. So we carried it ourselves. I learned about trauma. I learned about nervous systems. I learned about attachment. I learned how to help a child rebuild trust in himself and in the world around him.
The absence of a mental health diagnosis today does not erase the danger we were navigating then. If anything, it reminds me what was at stake.
What has changed, finally, is not the world — but the ground beneath us.
It stopped moving not because the journey ended, but because I stopped trying to make us fit where we did not belong. Because I learned that survival sometimes means refusal. Because I began to trust what our lived reality was already telling me.
And I know when the ground began to form.
The single focus came at a cost. No nights out. No relationship. No intimacy. No career. One aspect of an identity holding a child and a life together by a thread. That is what it actually took. Not heroism. Not superhuman strength. Just — everything. For fourteen years. Everything.
And every night, when I could, I wrote in a gratitude journal to my son. Not because things were good. Because he was. Because even on the hardest days there was something true about him worth witnessing. Worth writing down. Worth keeping.
That was the ground forming. One page at a time. One night at a time. Loyalty. Love. Holding on.
This is not a story of resolution. It is a story of what love does when it has nowhere else to go.
What has changed, finally, is not the world — but the ground beneath us.
I have a word for what held that ground when everything else was trying to break it.
It is the same word I found at twenty-seven, sitting outside a mosque with tears on my face. The same word that built doorways when doorways were denied. The same word that refused — quietly, expensively, without recognition — to let the system’s story become my son’s story.
Punk.
Not as performance. Not as aesthetic. As the only theologically coherent response to a system that demanded we perform dysfunction in order to prove we deserved help. The Sufi in me kept returning to Allah. The Punk in me kept refusing to let the world define what that return had to look like.
It becomes the ground itself. And discovers, in that becoming, that it was always capable of exactly this.
Fourteen years. And we are still here.
Turn to look at the world. This one is for the person who can finally see the soup. And for the professional throwing them a float — we see you trying. The float needs to be bigger.
Zawiya Discussion
The Wide Lens — Somatic, Intersectional & Systemic
The SEND system in the UK is not broken. It is working exactly as it was designed to work — for the families it was designed to serve. For everyone else, it is a machine that demands proof of suffering as the price of entry, and then frequently fails to deliver what it promised. Tribunals, EOTAS applications, assessment processes — these are not support systems. They are bureaucratic gauntlets that require families to perform and document their child’s dysfunction on demand, in language the system recognises, on timelines the system controls. For a family already operating at the edge of their capacity, this process does not help. It harms.
The cumulative grief of a PDA journey is also rarely named or understood. Each new diagnosis arrives as both a relief and a loss — a clarification that simultaneously demands a fresh round of grieving. There is no linear path through this. There is no arrival point. And the isolation is compounded by the fact that even within disability and neurodivergent communities, the most severely affected families are often invisible — too overwhelmed to attend support groups, too exhausted to advocate publicly, too housebound to be seen.
What is also rarely named is the cost to identity itself. The parent of a child in crisis does not simply lose time or career opportunity. They lose the conditions in which a self can exist. No nights out. No relationship. No intimacy. No professional identity. One aspect of self holding everything by a thread. That is not a temporary sacrifice. It is a fundamental reorganisation of who a person is allowed to be. And the world offers no language for the rebuilding that must eventually follow.
The absence of a mental health crisis at the end of this journey is not evidence that there was never a crisis. It is evidence of what one person, without adequate support, managed to hold together through knowledge, love, and refusal to give up.
The Devotional Lens
Every tradition that has understood grief has also understood that lament is not the absence of faith. It is one of faith’s most honest expressions. They name it differently. But the crying out is the same.
In the Qur’an, the Prophet Ya’qub — Jacob — wept for his lost son Yusuf until he lost his sight. He did not perform acceptance. He did not perform gratitude. He grieved, openly, for years. And his grief was not a failure of faith. It was faith. The Islamic tradition has always understood that lament is a form of prayer — that crying out to Allah from the depths of genuine suffering is not distance from Him but proximity.
The Psalms of the Hebrew and Christian traditions carry the same truth. Psalm after Psalm cries out from desolation — where are you, why have you abandoned me, how long must I endure this. These are not the words of people who have lost faith. They are the words of people whose faith is strong enough to hold their full reality before God without flinching.
Survival under conditions no one should have to survive is not a small thing. It is a profound spiritual achievement. And the refusal to sacrifice a child’s wellbeing on the altar of systemic compliance — even when the cost is enormous — is not defiance. It is a fierce and holy act of protection.
And the love that wrote itself down in a gratitude journal every night — that witnessed something true in a child even on the hardest days — was not just survival. It was devotion. It was the ground forming beneath feet that had nowhere solid to stand. That is a beautiful soul doing the most sacred thing a soul can do. Refusing to stop seeing the beloved clearly. Even in the dark. Especially in the dark.
Questions
Where has your survival been mislabelled — by others or by yourself — as failure, stubbornness, or refusal to engage?
What would it mean to recognise the knowledge you have built through lived experience as valid, rigorous, and worthy of respect?
When the ground beneath you is shaking, what is the single small thing that keeps you tethered to yourself?