special-educational-needs – I am James' mum

Why? How? Beliefs, Belonging, Burnout and Beyond

Beliefs shape how we see the world.
Belonging shapes how we survive in it.
And if we can’t always answer how, maybe we go back to why.

Today I attended a business workshop where we discussed passion, burnout, and bouncing back. It helped me connect some of the things that have been quietly sitting in my brain for a while: beliefs, belonging, burnout – and what comes next.

But let me backtrack. A new stim appeared today. I found myself wondering—was James trying to show something he couldn’t yet say? These are the kinds of questions I ask myself often. I overthink. But sometimes, that overthinking helps me notice patterns, to piece together signals that might otherwise go unseen. That brings me back to beliefs and burnout. I burn out because the load is heavy—juggling life, learning, teaching, and creating tools. Even things I love can weigh me down when there’s no room to pause.

Lately, I’ve been experimenting with AI tools—training image generators to create meaningful visuals for my projects. I hoped it would make things easier. The results are inconsistent: brilliant one moment, bizarre the next. In a way, it reminds me of autism and the term spiky profile. Like that term, these tools can be great in one area and miss the mark in another.

It also reflects something deeper: expectations.

We often expect people—especially children with additional needs—to “perform” to certain standards. We do this without pausing to understand the gaps in comprehension, communication, or cultural background.

Take a sandwich, for example.

If you give someone butter, bread, chicken, and egg, what do they make? That depends on where and how they were raised. Do they toast it? Does the butter go inside or outside? What goes first—the chicken or the egg? How would an untrained Artificial Intelligence Bot make it? (Ha.)

The point is: the “rules” are cultural. Learned. Assumed. Alien to some! Yet sometimes, experimenting outside those rules leads to something beautifully unexpected.

If the response is supportive—“that’s a creative idea,” or “tell me more”—it becomes part of a learning process. But if the response is “not like that” or “that’s wrong,” it can feel alienating. This can erode confidence. Imagine the frustration. Imagine facing that type of reaction with almost everything, all the time.

The challenge deepens when rules change depending on where you are too. I navigate language and systems in a culture that isn’t my own. My lifestyle doesn’t always fit the norm. The strain of not quite fitting in is something I feel often. This is especially true in this international world. Many of us are raising third-culture or even fourth-culture children. The layers add up. Different languages, different social cues, different systems. It’s no wonder burnout is common. Burnout isn’t just tiredness. It’s a state of mental, emotional, and physical depletion. It’s the slow erosion that comes from constantly adjusting to expectations that weren’t designed with you in mind. I see it in my child. I feel it in myself. And I read about it in parent communities.

I do overthink. I do burn out. But to counteract the signals, I’ve built myself a first-aid kit for those moments. I exercise, listen to music, read, sing, or work. I remind myself it’s okay to not be okay. It’s not perfect, but it helps. Sometimes I still hide. Tomorrow might be the day I’m a little less afraid.

Maybe the answer is simple: We are human. We evolve. We are the species that invented aircraft and landed on the moon. We can make life better for those living with depression or anxiety, or those who feel like they don’t belong. We can build systems of communication that meet people where they are. We can create roles and spaces that value what people bring, not just measure what they lack. People have the power to make meaningful change.

I write to make sense of it all—for myself, and for James. To find a way move beyond his current way of communicating.
For every child and parent who feels like they’re getting the sandwich sign wrong, but keeps trying anyway.

And maybe, through it all, we can create a space for hope, answers, belonging, and a little magic. Maybe tomorrow that stim will have gone away. TBC 🙂

Messy play and the Magic Porridge Pot

I was looking for a way to build a bit of extra learning into one of James’ favourite pastimes earlier- messy play with oats – and I remembered the old tale of The Magic Porridge Pot. So I rewrote it for James and called it:
The Magic Porridge Pot: You Tell Stop! He enjoyed the rhythm and storytelling and actually forgot about the messy play. A double win for me, less cleaning up 😉

My version is built for children with special educational needs. It’s simple structure to support Makaton signing, with keyword prompts in every section. I thought a great way of weaving in keywords for kids that need support with keywords, big feelings, and remembering (or forgetting) what comes next.

I’ve added some real-world concepts like safe, dangerous, look, and careful. These concepts are more than just story words—they’re life tools. And I’ve tried to keep it funny and joyful. There’s porridge in the school, the cars, the park… everywhere. It’s a silly and hopefully fun way to build engagement and imagination – children rolling like beach balls! Learning how to say stop matters. This is especially true for self-advocacy.

The language is plain but expressive, and there’s plenty of space for children to join in. Some might sign “Pot cook!”, some might tap, gesture, laugh—or just watch. The structure hopefully allows for lots of repetition and learning:

✨ Predictable sequences
✨ Rich emotional vocabulary
✨ Accessible phrasing
✨ Familiar routines with a twist

The story of the Magic Porridge Pot – You Tell Stop!

An inclusive story with signs, and hopefully smiles. I’m still working on the signing videos and visuals —let me know what you think and if you’d like to see more 🙂

Page 1 – The Hungry Family

Once upon a time, there lived a family.
A young boy, a girl, their mummy and daddy.
They had no money to buy food.
They were hungry all the time!

🔑 Key signs: family, boy, girl, mum, dad, food, hungry, time

Page 2 – Into the Forest

“We will go and find food in the forest,” said the children.

“Be careful,” said Mummy.
“Some berries are not safe. Please look for blueberries

“Be careful,” said Daddy.
“Some leaves are dangerous. Look for green, curly kale.”

“OK, we understand,” said the children.
They packed their backpacks and waved goodbye.

🔑 Key signs: safe, dangerous, look, find, children, ok, understand, goodbye

Page 3 – Meeting the Magic Couple

In the forest, they met an old woman and old man.
They were kind and lived in the same town.

“Hello, children. Are you looking for fruit and vegetables again?
Are you hungry again?”

“Yes,” said the children, feeling sad.
“Oh dear,” said Mrs Magic.

“We will give you a magic pot.
Say ‘Pot Cook’ when you want porridge.
Say ‘Pot Stop’ when you have had enough.”

“Thank you!” said the children.
They ran home.

🔑 Key signs: meet, old, woman, man, kind, same, hello, fruit, yes, sad, oh dear, thank you, run, home

The parents were so happy.
Everyone ate until their tummies were full.
“Yummy yummy!”

“I have an idea,” said the girl.
“Let’s go to town and share.”

“Good thinking, darling!” said Mummy and Daddy, clapping.
The family went to town with their pot.

They set up a table and drew a picture:

“Magic to Share – Eat All You Can!”

They shouted, “Pot Cook!”

🔑 Key signs: parents, happy, eat, tummy, full, share, good, think

Page 5 – Too Much Porridge!

The pot cooked and cooked!
Everyone ate and had big, round tummies!

People started to roll like big beach balls.
They bumped into each other.
It was so much fun!

Everyone laughed—but then felt sleepy.
They forgot something very, very important…

They forgot to say: “Pot Stop!”

🔑 Key signs: important, cook, big, round, tummy, roll, beach, ball, fun, laugh, sleepy, forget, pot, stop

Page 6 – Porridge Everywhere!

While they slept, the pot cooked more…
It filled the park, the supermarket, the cars, and the school!

“Oh dear!” cried everyone.
“What can we do?!”

“We must say, Pot Stop!” said Daddy.

Everyone shouted, “POT STOP!!!”
The pot stopped.

“We won’t be hungry for a long time,” they laughed.
“Next time, we’ll remember to say stop!”

🔑 Key signs: more, park, supermarket, cars, school, what, can, do, must, stop, hungry, next, remember

Learning Contexts

Communication: key signs, modelling
Understanding everyday routines: food, hunger, eating.
Concepts: kindness, safety, cause & effect
Emotional literacy: happy, sad, sleepy, sharing
Sequencing: first, next, problem, solution
Exploring safety and choices: safe/unsafe foods.
Language development: sequencing, key vocabulary.
Makaton sign development: key nouns, verbs, and adjectives.
Social-emotional learning: kindness, sharing, remembering instructions.

Sign Along Vocabulary (categorised)

Category	Words
People & Family	family, boy, girl, mummy, daddy, woman, man, old, young, children, parents
Food & Cooking	food, eat, berries, kale, fruit, vegetables, cook, porridge, pot, full, tummy
Feelings	hungry, sad, happy, kind, sleepy, fun, laugh
Safety Concepts	careful, safe, dangerous
Actions	find, look, go, run, wave, forget, remember, draw, shout, share, clap
Descriptions	blue, green, curly, big, round, same
Places	forest, town, park, supermarket, cars, school
Questions & Commands	yes, no, ok, thank you, what, can, do, must, stop, next

Reframing, rewiring and repair – On PDA , parenting, and finding peace

This post picks up from a recent Facebook post about singing, stimming, and choosing my battles (actually, not choosing to battle), touching on what it means to accept preferred behaviours—mine and my son’s—and the power of being present. A recent Uniquely Human Podcast on Neuro-affirming care and PDA brought these thoughts into sharper focus, so I wanted to reflect more here.

Looking at the title now, it could just as easily be a DIY home improvement post—and in many ways, it is. It’s about the rewiring we do as parents when we’re raising children who don’t fit into neat boxes. A personal repair.

From Pathology to Autonomy

Although I dislike the terminology of PDA (Pathological Demand Avoidance), the discussion struck a chord with me, particularly in the linguistic and diagnostic origins. Dr. Taylor Day pointed out that PDA is still a theorised profile, and that it’s the idea rather than the label that often best reflects lived experience.

Reframed as a Persistent or Pervasive Drive for Autonomy, the description feels closer to the truth. It shifts the focus from disorder to understanding. From behaviour to the influencing context. It invites the question—not “what’s wrong with this behaviour?” but “what is influencing this reaction?”

It’s Not Defiance—It’s Survival

Dr. Day spoke about PDA as a nervous system response: a cascading stress that affects the entire family. Not one trigger, but many, layered, compounding causes. A build-up in a hypersensitive system that’s on alert, that is fight or flight, freeze, fawn, overwhelm, and shutdown. All combinations of which can result in a state of chronic stress, often invisible, increasing over time, for both parents and children. She proposes it stems from insecurity. From my personal point of view, it has been panicking and not knowing what to do. And when that happens, demands and triggers of any kind can feel like too much.

The idea that some of our kids are “super sensors” feels closer to the truth. These are children (and adults) who are exquisitely attuned to tone, emotion, and stress, often without the capacity to regulate or respond in ways that look typical. And when they can’t comply, they get labelled as manipulative or defiant. It’s heartbreaking. They’re not trying to control the situation. They’re trying to survive it.

Reframing, for us

Dr. Day invited us to rethink how we make demands, and why. A child’s “big reaction” might be the result of years of subtle (and not so subtle) pressures, often unknowingly passed down by us.

In the same podcast, Dr. Barry Prizant asked: Who should really be teaching us? It is so easy for professionals to assume their way is best. Their language, their diagnosis, their model. But shared human experience is essential. As human beings, we all come with our own lens. Our own wiring. Lived experience is no less valid than academia. Lived experience doesn’t need a PhD to be valid. It’s valid because it has been lived, a space and truth beyond textbooks. It was refreshing to hear that acknowledged. And that’s where conversations like this matter. It is the bridge to better understanding, improved approaches, and pivotal and pragmatic steps forward in DIY therapy and empowered parenting.

Repairing the system, too

Looking back, so much of the early support we received was compliance-focused. Sit still. Tick the boxes three times consecutively to pass for normal. But at what cost? With hindsight, my neurodivergence is something I understand better now. This isn’t about blame. It’s about a review. About asking: Why did I think that was the right path? What parts of me were just trying to survive, too? Neurodivergence, Autism, and related challenges don’t discriminate. They touch every class, background, and IQ level. It’s not about capacity. It’s about support. There is no hierarchy. And there’s no universal “right way”—only ways that work (or don’t) for each individual. It is a phenomenon that we continue to learn how to approach, theorise, and try out.

Letting Go of “Normal”

The repair work I’m doing now is more about shifting the focus away from neurotypical benchmarks—function, assessment, normalcy—and asking: What actually helps him?

So many therapeutic models still frame success as compliance. We need to ask—what’s actually serving our child? Not what makes others comfortable. Not what ticks boxes or looks good on paper.

As my son enters the next phase of his life—physically the size of a man, on the edge of his teenage years—I think constantly about how the world can include him. He may need substantial support in daily life, but does that mean that life skills should be his priority? I’m more interested in developing his expression, communication, and preserving his youth. In nurturing self-advocacy. Of course, when safety isn’t the immediate concern.

He is where he is, in part, because of a larger inclusion problem. That’s why I keep doing this work: to keep changing how I see, how I respond, and how I show up for him.

Presence, Not Panic

One of the most powerful grounding tools Dr. Day shared was beautifully simple:

“Ask yourself, where are my feet right now?”

It’s so easy to live in the future as a parent, especially when your child’s future feels uncertain. What will happen when I’m gone? How will they cope? But anxiety steals the moment. And in the moment is where our children need us.

Instead of spiralling into all the unknowns, I try to focus on now. Enjoying our time together, and this sometimes means doing our own thing, but still checking in. Finding calm. This isn’t avoidance—it’s presence. And it’s powerful. It helps rewire my panic (neurological) pathways that have existed for a long time. It isn’t easy and it takes time, but the good news is that neuroplasticity can continue throughout our lives. Another leap of understanding in the field of neuroscience and neurobiology.

What really matters?

So instead of thinking in goals, guilt, outcomes, and “what should be,” I now try to think in contentment and connection. What helps my son feel safe? How can I support his autonomy? I turn to blogs, textbooks, and good news stories. And ultimately his behaviour tells me we are on the right track, for now.

Neurodivergent-affirming care starts with this:

Seeing the person in front of you as whole and worthy.
Understanding strengths and support needs, not just deficits.
Prioritising quality of life over performance.
Asking: Do they want to work on this? Not just: Do they need to?

This is respect and repair.

Not choosing battles—choosing peace

We hear a lot about “choosing our battles” in parenting. But maybe it’s time to step out of the battle altogether. If we see the stage our children are at, not as something to manage, but to meet with curiosity, then everything softens.

And it’s not just the child who needs care—we do too. Especially when neurodivergence runs in the family. Support needs to start with us, not end with us.

Uniquely Human Podcast

This podcast is full of insights—too many for me to cover here. I highly recommend listening to it. It’s one of those conversations that leaves you not with a checklist, but a shift in how you see things. And sometimes, that’s exactly what we need.