Danielle Brown-Kelly - Advocate

11/06/2026

Really looking forward to this ❤️

🌿 Our next Branches will be a Drop In Session ,Tuesday 16th June 2026
📍 The Base, Lyndhurst Crescent, Swindon SN3 2RW
⏰ 09:30am – 11:00am
✨ A New Format This Month

Based on feedback from parents and our team, we are changing things up.

Instead of a structured session, this month’s Branches will be a relaxed drop in event.
☕ A Warm, Welcoming Space
Our Parent Reps will be there if you would like to:
• chat 💬
• offload 🧡
• or simply sit with others who understand 🤝

Pop in for a cup of tea and a biscuit and stay for as long or as little as you like.

💛 You are Truly Welcome
These events are arranged especially with you in mind.
If you know someone who has been thinking about coming but hasn’t quite made it yet, bring them along.
Sometimes all someone needs is a gentle nudge.

🌈 From One SEND Parent to Another
We are SEND parents ourselves, and we genuinely want to support you.

👋 See You There

We look forward to welcoming you.

11/06/2026

At Swindon Carers Together, we understand that when you're caring for someone else, finding time for yourself isn't always easy. That's why we've planned a range of supportive, enjoyable, and informative activities for unpaid carers across Swindon throughout July–December.

Whether you're looking to:
- Relax and recharge
- Connect with other carers
- Access practical advice and support
- Focus on your wellbeing
- Discover a new hobby

There's something for everyone, and we'd love for you to join us.

Our events are designed to help you feel supported, learn something new, and be part of a community that understands the caring role.

To register your interest in any of our upcoming events, check your emails for the What's On form or contact [email protected].

Please note, you must be a registered carer with Swindon Carers Together to attend our activities.

11/06/2026

This week is Carers Week, and I’ve had the pleasure of attending not one, but two lovely coffee mornings organised by Swindon Carers Together, one at The Sun Inn and another today with Kingswood Surgery.

People often hear the word “carer” and think of paid professionals, but many carers are parents, partners, grandparents, siblings, friends and neighbours supporting someone they love every single day.
Many don’t even realise they are carers.

Caring can be rewarding, but it can also be exhausting, isolating and overwhelming at times. Having somewhere to go where people just get it can make such a difference.

If you provide support to someone because of a disability, illness, mental health condition, addiction, age-related needs or additional needs, I would really encourage you to register with Swindon Carers Together.

They offer information, support, events, opportunities to connect with other carers and, importantly, recognition for the vital role carers play within our communities.

You do not have to do everything alone.
You can find out more and register here:

https://www.swindoncarerstogether.org.uk/?fbclid=IwVERDUASXs2NleHRuA2FlbQIxMABzcnRjBmFwcF9pZAo2NjI4NTY4Mzc5AAEen8L5oL4FqdC-IZdiZMelkIa0fiY2ehecgq7aCUa_aEPVFS2e0go6C17_nNg_aem_aPtctd2xSzC1Hj0vd7ey6Q

A huge thank you to everyone involved in organising this week’s events and all the future events on the calendar that i’m looking forward to attending.

As a parent carer myself, I know how easy it is to put everyone else’s needs before your own, and how valuable people holding space for us is.

Support for informal and unpaid carers in the Swindon area

11/06/2026

It was lovely to sit with people from different sectors today to discuss our experiences of Swindon and what can be done to help improve the lives of people in the town.
Experience of or currently working in Health, social prescribing, local counselling, police, provision, advocacy, carers and education.
Lots of signposting, sharing ideas and building connections.

08/06/2026

I’ve been sitting with this idea for a long time, and now I’ve spoken to the relevant people for support I believe now is the time 🥰

Every week I speak to families who are trying to find places where their children can simply exist safely and comfortably. Places where they feel welcomed, understood, accommodated, and included.

Too often, families arrive somewhere hoping it will be accessible, only to discover it isn’t.
And accessibility is about so much more than ramps and regulations.

It’s about whether staff are understanding.
Whether a child can take a break when overwhelmed.
Whether families feel judged or supported.
It’s about emotional safety, dignity, flexibility, and belonging.

That’s why I’m launching:

ISLA | Inclusive Spaces & Local Accessibility

ISLA exists to help families find, celebrate, and improve inclusive spaces through lived experience.

We believe accessibility means being able to participate as your authentic self.

Over the coming months, we’ll be launching a Facebook community and webpage where families can share their experiences of places such as:
Libraries
Cafés
Cinemas
Sports Clubs
Parks
Soft Plays
Holiday clubs
Leisure Centres
Hotels & Holiday Venues
…and anywhere else that makes people feel welcome.

Businesses and organisations will also have the opportunity to become-
an ISLA Recognised Space
Inclusion. Accessibility. Belonging.

We’ll be celebrating venues that demonstrate things such as:

Neuroaffirming Practice
(Understanding staff, flexibility, acceptance of regulation needs, and a non-judgemental approach.)

Sensory Inclusion
(Quiet spaces, reduced sensory environments, and thoughtful adaptations.)

Physical Accessibility
(Mobility access, accessible facilities, seating, and practical adjustments.)

Family Inclusion
(SEND-friendly environments, sibling-friendly spaces, and flexibility for families.)

Emotional Safety
(Compassion, patience, dignity, understanding, and kindness.)

Most importantly, ISLA will be shaped by the community.

We’ll gather reviews, stories, testimonials, and feedback to help identify what genuine inclusion looks like in practice.
Because imagine being able to say:

“50 local families have recognised this venue as a genuinely inclusive space.”

That means something.
So I would love to start with one simple question:

Parents, carers, young people and professionals…
Please tell me about a place where you or your child felt genuinely welcomed, understood, and included.
What made the difference?

Let’s start building a map of the places that are getting it right.

One very important thing to note is that this isn’t about naming and shaming. It’s about recognising good practice, sharing lived experience, and helping spaces become more inclusive.

Of course, not every experience will be positive, and I know many families have stories of places where they felt unwelcome, misunderstood, or unable to access what was on offer.

Those experiences matter too.

When the group launches, I will happily receive private messages about negative experiences. However, these will not be publicly posted within the group.

Instead, where appropriate, I hope to approach venues directly, share feedback constructively, and offer an opportunity for conversation.

Sometimes a small adjustment, greater awareness, or clearer communication can make a huge difference to a family’s experience.

The goal is not to exclude businesses from the conversation.
The goal is to bring them into it.

My hope is that venues will feel encouraged and supported to develop more inclusive practices, and that many will go on to become recognised as an ISLA Inclusive Space in the future.

Because ultimately, this isn’t about finding fault.

05/06/2026

Not every disagreement is an argument. Sometimes it’s someone trying really hard to build a bridge.

Having ADHD I’ve been told before that I love arguing and it’s probably my way of getting dopamine.
Whilst parts of that may be true, for me, arguments and disagreements are not about me wanting to win, they’re about me wanting to understand and be understood.
I’m not arguing. I’m trying to understand.

The coercive cycle of interaction is something I’ve experienced my whole life.
I’ll be in a conversation where I’m genuinely trying to understand someone, asking questions, clarifying details, explaining my perspective, and suddenly the other person gets frustrated and says “Why are you arguing with me?”
It’s so bloody frustrating because it’s literally just my communication pattern- my attempt to gain understanding, clarity, and resolution is interpreted by the other person as resistance, or conflict.
The more misunderstood I feel, the more I’ll explain.
The more I explain, the more the other person feels challenged.
The more challenged they feel, the more defensive or dismissive I become.
Which makes me feel even more misunderstood.
And round and round it goes 😅

To them it’s an argument, to me it’s cognitive sparring.

I want to know how you got to your conclusion.
I want to understand your reasoning.
I want to see the world through your perspective.
And I want you to understand mine!
The frustration will kick in when I feel there’s no forward momentum, and
I can see the other person cares more about being right than seeking to understand my perspective.

For many of us ND humans, disagreement isn’t conflict it’s connection, and I know a lot of people reading that will understand exactly what I mean.
Sometimes asking questions is how we engage, challenging an idea is how we explore it, and pushing back is just curiosity.
I get that some people experience disagreement as a threat to connection, but others, like me, experience disagreement as a path to connection.

We don’t need you to agree with us.
We don’t need to “win.” We just need to know that you genuinely understand what we’re trying to say.
But what feels like curiosity and conversation to us can feel like confrontation to someone else.
Meanwhile, we’re sitting there thinking:
“Wait… we’re arguing?”
Because in our minds we’re engaged in dialogue, exchanging ideas, clarifying details, testing logic, and working toward mutual understanding.
We’re not fighting each other! We’re trying to solve the misunderstanding.

Sometimes what looks like arguing is actually someone desperately trying to reach mutual understanding, and that feeling of two people who’ve finally helped each other to see where the other's perspective is coming from is golden (maybe that’s the dopamine hit)

Also for me, I care deeply that the information is right and so I’m not trying to win; I’m trying to make sense of it.
I feel like I have to keep it going until it’s reached that point.
I’m like that with most things in life. If I start something I have to finish it. So in a disagreement, I will push for logical reasoning until it makes sense to me. If it doesn't make sense, then it's really hard for me to let it go.
My brain will be stuck on still trying to close the gap between what you’re saying and what makes sense to me.

I’m trying to navigate that with PDA, and experiencing RSD all at the same time.
Arguments are exhausting, especially when that was never the intention to begin with.

05/06/2026

The Government has now responded to our petition, and there is something really important that we cannot ignore.

For the first time, the response specifically references support for “autistic children and young people with a Pathological Demand Avoidance (PDA) profile” within the proposed National Inclusion Standards.

This petition was never about creating a separate diagnosis. It was about recognition, understanding, and ensuring that children and young people with a PDA profile receive appropriate support based on their needs.

The response states:

“National Inclusion Standards will set out the evidence-informed tools, strategies and approaches for educators… to identify and support children and young people with additional needs, including autistic children and young people who may have a Pathological Demand Avoidance (PDA) profile.”

It also says:

“Access to support should not be dependent on a child or young person having a diagnosis.”

These are positive statements. But now comes the crucial question:

What will this actually mean in practice?

If PDA is to be included within National Inclusion Standards, then PDA-informed approaches must be properly recognised, understood and reflected in the evidence base that informs those standards.

Families, PDAers, educators and professionals know that traditional behaviour-based approaches often fail children with a PDA profile. We need the evidence, research and lived experience around PDA-informed practice to be taken seriously as these standards are developed.

The Government has committed up to £15 million to strengthen the evidence base and says an independent expert panel will help design these standards.

This means our work is not finished. In many ways, it is just beginning.

We now need to ensure that:

• PDA profiles remain visible throughout this process

• PDA-informed approaches are included in future research

• Lived experience is listened to alongside professional expertise

• Schools receive meaningful guidance, training and support

• Recognition leads to real-world change for children and families

• Support should be based on need, not on where a child is educated.

Please continue sharing the petition and the Government response. Every signature helps demonstrate that this community expects more than words - we want meaningful inclusion, evidence-informed practice, and support that genuinely meets the needs of our PDA children.

Recognition is a step forward. Now let’s make sure the standards reflect what PDA families, educators and advocates have been saying for years.

Petition link:
🔗 https://petition.parliament.uk/petitions/757502

The conversation has started. Let’s keep it going.