Perfectly Imperfect

I think I’m broken.

Not permanently. Not dramatically.

Just… exhausted.

The kind of exhausted that sits in your bones.

The kind that comes from carrying something heavy for so long that you can’t remember what it feels like to put it down.

For over 10 years, my life has revolved around advocating.

Meetings.
Emails.
Reports.
Phone calls.
Research.
Explaining.
Educating.

Over and over and over again.

And the thing is, I never expected it to be easy.

My son is neurodivergent. I knew there would be challenges.

What I didn’t expect was that the hardest part wouldn’t be supporting him.

The hardest part would be supporting the systems around him.

This week was another one of those weeks.

A week where a reasonable adjustment designed to support him at school became another source of stress for our family.

A week where the solution seemed to be “come and get him” instead of “let’s support him.”

A week where everyone else’s inability to hold space for a child became an emergency for the people who love him.

Again.

And maybe that’s what hurts the most.

Not the incident itself.

The repetition.

The fact that after 10 years, we’re still here.

Still having the same conversations.

Still explaining the same things.

Still trying to convince people that disabled children deserve support, not just removal.

I’m tired of my phone making my stomach drop.

I’m tired of rearranging my life.

I’m tired of wondering whether I’ll get through a workday without another call.

I’m tired of the impact this has on our whole family.

On my relationship.

On my other children.

On my own nervous system.

Because the truth is, advocacy doesn’t end when the meeting finishes.

It follows you home.

It sits at the dinner table.

It comes to bed with you.

It wakes up with you at 3am.

And lately, I don’t feel strong.

I don’t feel resilient.

I don’t feel inspirational.

I just feel sad.

Sad that my son has to work so hard to belong.

Sad that families are still carrying this much.

Sad that so many parents reading this know exactly what I’m talking about.

I love my son more than words could ever explain.

I would fight for him forever.

But today, if I’m honest, I wish I didn’t have to.

I wish I could just be his mum.

Looking at this photo, most people would probably see a family enjoying a simple afternoon out.

A quick trip to the bowling alley.
Some laughs.
A few gutter balls.
A few happy kids.

Easy.

Except it rarely is.

One of the things I don’t think people fully understand about neurodivergent families is that family activities aren’t just about deciding where to go. They’re about balancing competing sensory needs, energy levels, interests, regulation capacities, anxiety levels, attention spans, unpredictability, and everyone’s ability to cope with the environment.

What sounds simple on paper can take a surprising amount of thought.

One child wants movement.
One child is severely anxious and their nervous system is fried.
Another wants predictability.
One needs stimulation.
Another needs less noise.
Someone is tired.
Someone is hungry.
Someone is already dysregulated before you even leave the house.

And then there are the parents, trying to somehow create family memories while mentally calculating whether the activity is worth the inevitable recovery period afterwards.

It can feel like a puzzle where all the pieces keep changing shape.

That’s why I’ve learned that success doesn’t always look like the big family holiday, the all-day adventure, or the perfectly curated family outing we see all over social media.

Sometimes success looks like an hour at the bowling alley.

Because bowling, surprisingly, ticked a lot of boxes. That day! It doesn’t everyday!

There was movement without needing endless physical exertion.

There was structure and predictability.

There was enough sensory input to keep some of us engaged, but enough space to step back when it became too much.

Nobody had to maintain constant conversation.

Nobody had to perform.

There were no complicated social rules.

No expectations to sit still for hours.

No pressure to make it a “perfect family day.”

Just a simple activity where everyone could participate in their own way.

And perhaps that’s the lesson I’ve learned as both a parent and a professional.

Family connection isn’t built through perfection.

It’s built through finding those little pockets where everyone’s needs can coexist.

Those moments where nobody has to mask quite so hard.

Where nobody has to push themselves beyond capacity.

Where the activity fits the family, rather than the family trying to force themselves to fit the activity.

Because what people see in a photo like this is a family bowling.

What I see is something much bigger.

I see planning.
Compromise.
Flexibility.
Co-regulation.
Understanding.

I see three beautiful children who all experience the world differently.

And I see my family slowly learning that sometimes the best memories are made in the activities that don’t look extraordinary at all.

Just an hour at the bowling alley.

A few strikes.
A lot of gutter balls.

And a family activity that, for once, worked for everyone.

Honestly, that’s a win I’ll take every single time.

— Jess

Sharing a diagnosis with your child happens over years, not in one sitting. What you say at four looks nothing like what you talk about at fourteen, and by twenty it’s different again.

Most parents worry about getting the wording right the first time. Most only realise in hindsight that it was never going to be one conversation. Helping parents think through how to start is part of what we do at feedback.

There are so many systems obsessed with “managing behaviours” while completely ignoring the environments creating the distress in the first place.

And families are exhausted. (Mine included!)

We are still seeing children punished for nervous system responses.
Still seeing suspensions for disability-related behaviours.
Still seeing “behaviour support” that is actually just compliance training with softer branding.
Still seeing autistic kids forced to survive environments that adults themselves would burn out in.

Then everyone acts shocked when the child stops coping.

A child who is dysregulated, aggressive, withdrawn, school refusing, masking all day, shutting down, exploding at home, or unable to meet demands is not automatically “non-compliant.”

Sometimes they are overloaded.
Sometimes they are terrified.
Sometimes they are surviving systems that were never built with them in mind.

And before someone says:
“But they need boundaries.”

Yes.
Children need safety, predictability, co-regulation, connection, emotional attunement, accommodations, nervous system support, communication tools, autonomy, and environments that reduce chronic stress.

Not just consequences. Guess what? You cannot punish a nervous system into feeling safe. You cannot reward a child out of burnout. You cannot sticker-chart your way through trauma. You cannot behaviour-plan away sensory overwhelm, chronic invalidation, or relational unsafety.

And we know this.

Parents are being told:
“Stay consistent.”
“Follow through.”
“Don’t give in.”
“Use firmer boundaries.”
“Remove preferred items.”
“Don’t reinforce the behaviour.”

Meanwhile, the child is drowning.
And the parents are drowning beside them.

We need to stop asking:
“How do we make this child comply?”

And start asking:
“What is this child experiencing that makes this impossible right now?”

That shift changes everything.

Because behaviour is communication.
Distress is communication.
Avoidance is communication.
Shutdown is communication.
Aggression is communication.

And if the only thing our systems know how to do with communication is punish it, silence it, or suppress it… then the problem was never just the child.

The problem is a world demanding regulation from nervous systems it refuses to understand.

Meet Hannah Lily.

Hannah is a talented pottery artist, creator, and human with a beautiful eye for detail, texture, and creativity. Through her pottery, she creates pieces that are not just functional, but deeply personal each one carrying its own story, personality, and heart.

As a person with additional needs, Hannah’s journey into small business and creative entrepreneurship is one built on passion, resilience, and authenticity.

At Perfectly Imperfect, we are huge believers in creating opportunities, visibility, inclusion, and spaces where differently abled artists and creators are celebrated for their strengths, talents, and passions, not just their diagnoses.

So if you love supporting local artists, handmade creations, and incredible humans doing amazing things, go give Hannah Lily Ceramix, a follow and show some love for her beautiful pottery journey.

We cannot wait to see where this takes you, Hannah. https://www.instagram.com/hannahlilysceramix?utm_source=qr