Only Half the Story: The Emotional Toll of Proving Your Child’s Needs
⚠️ Content Note: This post discusses the emotional impact of deficit-based assessments, reports, and funding applications for parents of disabled or neurodivergent children. Please take care while reading.
It’s the end of another school year here in Ireland, and for many parents of neurodivergent or disabled children, that means IEP reviews, year-end meetings, and the scramble for Summer Provision tutors.
For our family, it also means another Behaviour Support Plan meeting.
If you’ve ever sat in one of those, you’ll know what I mean when I say: it’s exhausting.
Meeting after meeting where your child is discussed at their most dysregulated, their most vulnerable. Sometimes, yes, it’s necessary… a way to ensure the right supports are in place. But other times, it just feels like an emotional gut punch.
There’s a quote I came across recently that stopped me in my tracks:
“The hardest part of being an SEN parent is writing down in detail what your child can’t do, when all you want to do is shout from the rooftops about what they can do.”
And I felt that. Deeply.
Because we’ve all been there. Forced to reduce our children to a list of challenges on a form or in a meeting, when all we want is to celebrate their light.
The Deficit Model — and the Burden of Proving
So much of our system - in Ireland and beyond - is built on proving that your child is “struggling enough.”
Whether it’s:
Domiciliary Care Allowance (a monthly payment made to the carer of a child under 16 with a severe disability who requires ongoing care here in Ireland)
School supports like SNAs
Therapy referrals
Psychology services
Assessment of Need reports to get a diagnosis and access public services
EHCPs (if you’re in the UK)
It all runs on a deficit-based model… meaning you must show what’s “wrong,” not what’s right.
Parents are even coached to do this.
We say to each other, “Don’t mention the good days,” or “Talk about the meltdowns, not the calm.”
We learn to write things like “unable to” and “requires full assistance.”
It’s heartbreaking. Because every fibre of your being wants to protect your child’s dignity, not catalogue their difficulties for strangers to judge.
Psychologist Dr. Mona Delahooke says:
“When we look only at behaviours, we miss the child’s internal experience.”
And that’s exactly what happens: the system sees the checklist, not the child. There’s no space for curiosity, joy, or growth. Just tick-boxes and labels.
I remember when I first filled out the Domiciliary Care Allowance form for my son. It took me weeks. Every question felt like a betrayal, because the “right” answers were the worst ones.
“Yes, he’s non-speaking…” (but he’s learning to spell on a letterboard).
“Yes, he pinches when dysregulated…” (but he also loves tight hugs).
“Yes, he struggles with hygiene…” (but he radiates joy in the water.)
That form showed only half of him.
The half that fits the system… not the boy who loves the ocean, stares in awe at twinkling Christmas lights, and dreams of outer space.
The Emotional Cost to Parents
Over time, constantly focusing on what’s wrong starts to change how you see things.
You begin to question yourself.
You forget the good moments.
You start to feel like you’re failing - not just your child, but yourself.
In The 5 Resets, Dr. Aditi Nerurkar writes:
“It’s not just the pressure itself - it’s the absence of recovery.”
And that line hits hard.
Because this system doesn’t allow recovery.
It doesn’t allow you to just be with your child, without analysing them.
There’s always another form to fill, another service to chase, another justification to make.
Recently, my son has been struggling with school refusal - refusing to get out of the car in the mornings.
For a while, I managed it with small incentives, letting him use my phone to self-regulate. But inside the classroom, his distress would often flare again. And time after time, professionals suggested that his protests were the result of us “giving in” to his demands.
Not sensory overload.
Not emotional dysregulation.
Not the overwhelm of a world that doesn’t fit his nervous system.
Just “bad behaviour.”
It’s hard not to feel grief in moments like that.
Not grief for who he is, but for how unseen he is.
How misunderstood his struggles are.
And how lonely it feels to carry that truth.
Brené Brown reminds us that shame thrives in silence.
And yet so many of us stay quiet because it feels taboo to admit how much this system hurts.
But you can say it. You should say it.
You’re not disloyal to your child when you name the pain of this process… you’re human.
Holding Both Truths
So how do we resist this deficit narrative?
We start by holding both truths.
Your child does have challenges.
They do need support.
And they are also a whole, beautiful, fascinating person with joy, humour, and potential.
We can honour both at once.
For me, that looks like celebrating small wins out loud:
“He gave me the biggest cuddle today.”
“He answered five new spelling questions.”
“He’s obsessed with Jacques Cousteau at the moment.”
No assessment form will ever ask about those things… but they matter more than anything.
If you can, capture them:
Voice memos after good days
A folder of proud photos
Notes of small victories
Because when you’re forced into deficit mode again, you’ll have something to ground you in truth - the full story.
As Zoe Blaskey of Motherkind says:
“You are the expert on your child - and that includes what’s going right, not just what’s going wrong.”
Yes, the system needs to change.
We need trauma-informed assessments, strength-based reports, and more compassion.
But until that happens, our job is to protect the other half of the story.
To insist that our children are more than paperwork.
You Are Not Failing
If you’ve ever walked away from a meeting feeling like you just betrayed your child - I see you.
If you’ve ever rewritten a form three times to make it sound “bad enough” - I’ve done that too.
If you’ve ever felt like you were trading dignity for support - you are not alone.
You are navigating a system that was built to measure deficits, while holding your child’s wholeness in your heart. That is strength. That is love. That is advocacy.
So here’s my reframe:
“Loves swimming. Obsessed with Peppa Pig. Gives the best hugs. Makes me proud every single day.”
That’s the real form - the one that matters.
Because they deserve to be seen.
And so do you.
Reflection
What would your “real form” say about your child?
Take a moment today to write three things that make you proud and keep them somewhere visible. Let them anchor you the next time the paperwork feels like too much.
Listen to the full episode:
Next step
If this story resonates, you might find my free guide The First 30 Days especially grounding — a gentle companion for those early weeks after diagnosis. Download it here →
