Dancing Through ARFID

Dancing Through ARFID Dancing Through ARFID shares lived experience from a parent and daughter. Plus a Parent perspective on SEND Experience in Schools in UK and Abroad.

Currrently a Facilitator in Social Care for SEND Families Awaiting a Diagosis on the SEND Pathway.

What an afternoon! 🥺We arrived at Subway today, ready for Elodie’s usual Saturday safe food, only to discover they had n...
03/10/2026

What an afternoon! 🥺

We arrived at Subway today, ready for Elodie’s usual Saturday safe food, only to discover they had no bread.

She was absolutely devastated. To some people, it may seem like it’s “just bread” or something that could easily be replaced with a different meal—but with ARFID, safe foods aren’t always interchangeable.

It’s the exact taste, texture, smell, appearance and preparation that make a food feel safe. It’s also part of her predictable Saturday routine, so when it suddenly wasn’t available, it felt enormous to her.

This is one of the realities of living with ARFID that people don’t always see: the careful planning, the searching for safe foods and the emotional impact when something unexpected changes.

We’ll be driving around later today to try to find another Subway with bread. In moments like this, I’m especially grateful that we have her NG tube, “Sharon,” to support her nutrition and take away some of the immediate pressure. ❤️

The tube doesn’t remove her disappointment, but it gives us a safety net while we help her process it and find another safe option.

Wish us luck on our Saturday Subway mission! 🤞🥖

#

🎃 When the environment becomes the barrier…Halloween can be exciting, but for a child with ARFID, autism or sensory diff...
02/10/2026

🎃 When the environment becomes the barrier…

Halloween can be exciting, but for a child with ARFID, autism or sensory differences, seasonal events can also feel completely overwhelming.

The crowds. The music. The costumes. The unfamiliar smells. Tables filled with food and sweets. The expectation to join in, try something or explain why they aren’t eating.

A child standing quietly on the outside isn’t being difficult or refusing to have fun. Their nervous system may simply be telling them that the environment doesn’t feel safe.

Inclusion could look like:

✨ Offering activities that don’t involve food
✨ Allowing children to bring their own safe foods
✨ Providing a quieter space or easy way to leave
✨ Sharing plans and photographs beforehand
✨ Removing pressure to eat, touch or talk about food
✨ Accepting that joining in may look different for every child

Children shouldn’t have to push themselves into distress just to feel included.

What helps your child feel safer at Halloween or other seasonal events?

Seasonal changes can bring new routines, unfamiliar foods, busy celebrations and added sensory pressure—all of which may...
02/10/2026

Seasonal changes can bring new routines, unfamiliar foods, busy celebrations and added sensory pressure—all of which may make ARFID feel even harder.

Predictability, safe foods, genuine choice and food-free ways to join in can help someone feel supported and included. Different participation is still participation. 💚

ARFID IS NEVER JUST ABOUT FOOD! Over the past two weeks, while exploring secondary schools for next year, I’ve realised ...
01/10/2026

ARFID IS NEVER JUST ABOUT FOOD!

Over the past two weeks, while exploring secondary schools for next year, I’ve realised how many barriers neurodivergent children can face before they even step through the front gate.

Tonight, we waited outside because the music was too loud. Students were singing and playing in a band—a positive experience for many—but for Elodie, the music, crowds and queues were already overwhelming.

As we entered, food was being handed out.

“Mum, I feel so left out.”

There was nothing she could safely eat or even feel comfortable being around. That’s the side of ARFID people don’t always see—the exclusion when food is used to welcome, reward or bring people together.

In French, the children had to say a phrase to receive a food item. And just like that, Mr PDA appeared—the demand to speak in order to receive food made taking part feel impossible.

In science, they were cutting up meat and showing examples of pigs’ hearts. Elodie, who is also vegan, felt faint and ran from the room.

She tried basketball, but knowing lots of people had touched the ball made it feel contaminated, so she couldn’t join in.

The list went on.

From the outside, it might have looked like refusal. In reality, she was navigating ARFID, PDA, sensory overload, contamination fears, anxiety and the exhausting pressure to mask.

So how am I supposed to find the right secondary school when simply looking around becomes a battle for her nervous system?

For families like ours, choosing a school isn’t only about lessons, results or facilities. We’re looking for safety, understanding, flexibility and a place where our children won’t have to mask their way through every day.

Inclusion needs to begin before a child even steps through the school gates.

Have school open evenings created similar barriers for your child?

30/09/2026

There were years of little signs I didn’t yet understand. 💚

Anxiety, a frightening choking experience, foods not touching, no sauces, beige foods and an increasingly restricted diet.

I didn’t have a diagnosis or all the answers. I just knew my daughter—and I knew she wasn’t choosing this.

Looking back now, ARFID was already becoming part of her story. 💗

29/09/2026

“ Why do you not show her NG Tube change online?”

27/09/2026

Part 2: How Elodie got her NG tube 💖

Elodie became seriously unwell. She was barely eating or drinking and began experiencing slurred speech, confusion and chest pain that felt different from her anxiety.

After receiving a risk-to-life letter, we went to children’s A&E. Within around 90 minutes, she was admitted. Her blood results were severely affected due to malnutrition.

Elodie was given the opportunity to meet her needs through food, but despite trying incredibly hard, her body needed more support. That was when the NG tube became necessary.

The tube was never a failure or a punishment. It was life-saving medical support when ARFID made eating enough impossible. Although the experience was frightening and traumatic, her NG tube kept her safe—and helped keep her here.

I’m sharing our story to raise awareness that ARFID is not “picky eating.” It can have serious, life-threatening physical consequences.

This is our lived experience. If you are worried about someone’s eating, drinking or physical health, please seek urgent medical advice.

“Let them.”Let them eat their safe food again.Let them use their favourite plate.Let them eat somewhere they feel calm.L...
26/09/2026

“Let them.”

Let them eat their safe food again.
Let them use their favourite plate.
Let them eat somewhere they feel calm.
Let them use distraction if it helps.
Let them explore food without taking a bite.
Let them say, “Not today.”
Let them move at their own pace.

With ARFID, “let them” doesn’t mean ignoring their nutritional or medical needs. It means letting go of pressure, shame, comparison and other people’s timelines—while continuing to offer support, nourishment and gentle opportunities.

Because accommodating an ARFID child isn’t “giving in.”
It is helping their nervous system feel safe enough for progress to become possible. 💚

What do you wish others would simply let your child do?

25/09/2026

This is what happens inbetween a Tube Change at our house.

When Elodie’s nurse is persuaded to dance and makes the atmosphere feel lighter and the anxiety floats away temporarily.

The calm before the storm. SO grateful to have someone who understands her needs. ❤️

Supporting a friend or loved one with ARFID isn’t about convincing them to eat—it’s about helping them feel safe, believ...
24/09/2026

Supporting a friend or loved one with ARFID isn’t about convincing them to eat—it’s about helping them feel safe, believed and included. 💚

Food, eating out and social plans can feel incredibly overwhelming for someone with ARFID. A little understanding can make a huge difference:

✨ Believe what they tell you.

✨ Avoid pressure, persuasion or comments about how much they eat.

✨ Ask what would help before making plans.

✨ Remember that friendship doesn’t have to revolve around food.

✨ Keep inviting them, even when plans need adapting.

✨ Be the person they never need to apologise to.

You don’t need to have all the answers. Listening, respecting their boundaries and staying beside them matters more than trying to “fix” them. 💗

What has someone done that helped you—or your child—feel supported around food?

Save and share this with someone who wants to support a friend with ARFID.

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