By Julie Wales, Family & Special Needs Counsellor
Back in March 2008, I wrote an article called “Making Sense of the World Around Us.” It was meant to be a piece about counselling — about how clients, whatever they brought into the room, were struggling to make sense of a world that didn't always make sense of them either.
Reading it back now, the best part of two decades later, I can see something in it I didn't have the language for at the time. I wasn't only writing about my clients.
I was writing about grief. My own grief.
“The World Struggles to Make Sense of Them”
“My children when younger have struggled to make sense of the world and the world struggles to make sense of them … They have special needs ranging from mild to severe.”
That's what I wrote then. What I didn't say — because I didn't yet have the words for it — was that alongside loving my children fiercely, exactly as they were, I was also grieving. Not for them. For the picture of parenthood I'd carried before their diagnoses arrived, and for a version of “ordinary” family life that was never going to be ours.
Nobody sends a card for that kind of loss. There's no funeral, no ritual, no socially agreed moment to mark it. Your child is here, growing, thriving in their own way — so where, exactly, is the grief supposed to go?
A Grief With a Name — Even If No One Told You
If this feels familiar, you're not failing to accept your child, and you're not alone. There's a name for what you might be carrying: chronic sorrow.
It's a recognised concept in nursing and psychology, first described by Simon Olshansky in 1962 and later formalised as a middle-range theory by Eakes, Burke and Hainsworth in 1998, who defined it as:
“the periodic recurrence of permanent, pervasive sadness or other grief-related feelings associated with a significant loss.”
The word that matters most there is periodic. Chronic sorrow isn't a phase you move through once and finish with. It's triggered again and again — by a birthday, a school transition, an EHCP review, watching a friend's child hit a milestone yours hasn't. Researchers sometimes call it a “trigger event.” Parents just call it the day it all comes back.
There's a related idea from the psychologist Pauline Boss called ambiguous loss — grief without closure, where the person you love is physically present, but the future, role or relationship you'd imagined isn't. It's another way of saying the same thing: this loss is real, even without a body to grieve.
“Why Me, Why Us? Who Am I?”
In that same 2008 article, I wrote about the questions I heard from clients:
“Why me, why us? Who am I? What should I do?”
At the time, I framed these as questions my clients brought to me. Looking back, I know I was asking myself the same things, at whatever hour of the night the worry chose to visit.
These aren't signs that you haven't accepted your child, or that you're stuck, or that you're doing this wrong. They're the questions grief always asks, in any loss. The difference here is that there's no end point to draw a line under — the love, the caregiving and the questions all continue, together, every single day.
It Gets Easier to Carry — Even If It Doesn't Disappear
The same article had a lighter moment. I mentioned my children going through what I affectionately called “Kevin” mode, after the teenager in the old Harry Enfield sketches — the eye-rolling, door-slamming, thirteen-going-on-impossible phase. I wrote:
“I have to say things have improved with their age and maturity!”
That line makes me smile now, because it's still true. Grief like this isn't static — it moves. Some days it's heavy. Some days you barely notice it's there. And some days, often when you least expect it, it's back, sharp as the day you first felt it. That's not a setback. That's just what chronic sorrow does.
Naming It Is Not Betrayal
A lot of parents worry that admitting to this grief means they don't love, accept or feel proud of their child. It doesn't. Grief and love sit side by side here — they always have.
Even the language we use for our own families shifts and settles over time. In 2008 I described mine as coping “with life as a 'disabled' family.” I put the word in quotation marks then, because it didn't yet feel like it fit comfortably. Some parents arrive at a label like that quickly; others never quite reach for it, and both are fine. There's no correct pace for making sense of any of this — including what to call yourselves.
When Grief Doesn't Match: How This Affects Partners
Grief has never been something two people do at the same pace, and that's just as true here as anywhere else.
One of you might reach a place of acceptance — or exhaustion, or numbness — while the other is still deep in the “why us” questions. One might want to talk about it every evening; the other copes by staying busy, researching, fixing, doing. Neither approach is wrong. They're just different ways of carrying the same weight.
This mismatch can feel like drifting apart, even when neither of you has done anything wrong. It's worth naming clearly: parenting a child with additional needs does not, on its own, make a relationship more likely to end — research points to the level of caregiving demand and stress, not the diagnosis itself, as what actually puts pressure on a partnership.
What often helps most isn't fixing the mismatch, but simply recognising it exists, and giving each other permission to grieve differently, on different timelines, without either of you being “the one getting it wrong.” If you and your partner are approaching this differently, that's not a warning sign. It's normal — and naming it out loud to each other is often the first step back toward feeling like a team again.
What Can Help
1. Give the feeling a name. Simply knowing that “chronic sorrow” or “ambiguous loss” exists — that researchers have studied it, that it isn't a personal failing — can lift a surprising amount of the shame around it. Some parents say just reading the term for the first time feels like being believed.
2. Expect the resurgence, don't fight it. Birthdays, school transitions, EHCP reviews, watching peers reach milestones — these are normal trigger points, not evidence that you're coping badly. A parents' evening that catches you off guard in October doesn't undo the progress you made in August.
3. Find people who don't need it explained. A support circle, a friend further down a similar road, another parent who just gets it without you having to translate. That's often where the fog starts to lift — not because anyone solves anything, but because you stop having to hold it alone for an hour.
4. Let small moments of slow back in. Back in 2008 I shared some tips from Carl Honoré's In Praise of Slow — leaving space in the diary, eating supper at the table instead of on your lap, noticing when you're rushing out of habit rather than necessity. They're still true today, and they still help. It doesn't need to be more than five minutes with a cup of tea before the next thing starts.
5. Talk about how you're each grieving, not just what needs doing. It's easy for a couple's conversations to become entirely logistical — appointments, school forms, who's doing pick-up. Try setting aside even ten minutes to ask each other how you're really finding it, without moving straight to solutions.
6. Consider talking to someone. Counselling doesn't take the grief away — but it gives it somewhere to go, instead of somewhere to be carried alone. That's true whether you go individually, or as a couple.
Nearly Two Decades On
My children are grown now, and things genuinely have improved with age and maturity — theirs, and mine. But I still meet that grief sometimes, in the quiet moments. I've simply stopped being afraid of it.
If you recognise any of this — the fog, the 2am questions, the love that sits right alongside the loss — please know you are not failing, and you are not alone.
If you'd like to talk it through, you're welcome to get in touch, or to join one of our NeuroThrive Parent Support Circles, where conversations like this happen often, gently, and without judgement.
Frequently Asked Questions
Is it normal to grieve when your child is diagnosed with additional needs?
Yes. Many parents describe grieving the future or version of family life they'd imagined, even while they love and accept their child completely. This is well recognised in research as chronic sorrow or ambiguous loss — it doesn't mean you haven't accepted your child.
What is “chronic sorrow” in parenting a child with a disability?
Chronic sorrow is a recurring, ongoing grief response first described by Olshansky in 1962 and later defined by Eakes, Burke and Hainsworth (1998) as “the periodic recurrence of permanent, pervasive sadness or other grief-related feelings associated with a significant loss.” It resurfaces at trigger points — birthdays, transitions, milestones — rather than resolving once and for all.
What is “ambiguous loss” and how does it relate to special needs parenting?
Ambiguous loss, a concept developed by psychologist Pauline Boss, describes grief without closure — where someone is physically present but a hoped-for future, role or relationship has changed. For parents of children with additional needs, it names the loss of an imagined future without needing a bereavement to justify it.
Does grieving mean I don't accept or love my child?
No. Grief and love can, and usually do, sit side by side. Grieving the future you once pictured is separate from how you feel about the child in front of you today — one doesn't cancel out the other.
Do partners grieve differently when parenting a child with additional needs?
Often, yes. One partner may reach acceptance, exhaustion or numbness on a different timeline to the other, or cope in a different style — talking it through versus staying busy. This mismatch is common and doesn't mean the relationship is failing; naming it openly to each other usually helps more than trying to match paces.
Where can I get support if I'm struggling with this kind of grief?
You're welcome to reach out for one-to-one or couples counselling, or to join a NeuroThrive Parent Support Circle — a welcoming space for parents and carers to talk about exactly this, without judgement.
You don't have to carry this alone...
To learn more or book a session, contact me at:
📩 Hello@juliewalescounselling.co.uk
📞 07412 651 894
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