Every so often, I have a conversation that stays with me long after I have closed my laptop.

My recent conversation with Joanna Stephenson was one of those.

Joanna is a mum. She is not a speech and language therapist. She does not claim to be a selective mutism specialist. But what she has done in West Sussex is something I believe we need to pay attention to across the UK.

Because Joanna did something incredibly important. She stopped waiting for somebody else to change things.

“I didn’t know what I didn’t know”

One of the things Joanna said during our conversation was: “I didn’t know what I didn’t know.”

I think many parents will recognise themselves in those words. When your child is struggling, you listen to the people around you. You trust professionals. You wait for appointments. You join waiting lists. You give things more time because you are told that perhaps your child simply needs more time.

Joanna described doing exactly that.

There was always a reason to wait. And then she began learning more about selective mutism. The more she learned, the more she realised that waiting was not necessarily going to change the situation.

One sentence she said to me was particularly powerful:

“I was waiting for someone to come and rescue me. And I didn’t realise that the person that needed to rescue this situation was me.”

That doesn’t mean parents should have to become therapists. They shouldn’t. It doesn’t mean parents should carry the responsibility for fixing systems that are not working.

They shouldn’t have to do that either. But it does remind us of something I have believed throughout my career: Parents know their children in a way that nobody else can.

Our job as professionals is not to replace that knowledge. Our job is to bring our clinical knowledge alongside it. Joanna didn’t just tell her story. She collected evidence. This is where Joanna’s journey became particularly interesting to me. She didn’t simply say, “This happened to my family.” She started connecting with other parents in West Sussex.

She created a Facebook community. She listened. She collected experiences. She began to understand that what she was seeing was not an isolated problem. And suddenly one parent’s voice became many voices. Joanna told me: “I’m just the person who collates it all.”

I love that sentence because it says so much about what she has achieved. She didn’t need to position herself as the expert. She brought people together. She also did her homework.

Joanna used Freedom of Information requests to investigate what support and pathways existed elsewhere. She looked at training, referral routes and commissioned services. She wanted to understand what was actually available rather than making assumptions.

As she explained to me, she wanted to speak “legitimately and factually, not emotionally.”

Of course there is emotion. How could there not be when we are talking about our children?

But Joanna combined that emotion with evidence. And that is powerful. Then she stopped accepting “no” and Joanna’s campaign grew. She contacted people who had the power to influence change. She contacted political candidates in her area.

She secured political support. She spoke to the BBC, despite describing herself as shy and telling me how uncomfortable and exposed she felt doing it.

Her petition gained more than 1,000 signatures. And conversations began to happen.

During our conversation, Joanna told me about work already beginning around selective mutism training and information in West Sussex, alongside discussions about what a better pathway for children could look like.

Her campaign continues. And perhaps the sentence that summarises her journey better than anything else is this: “I learned to stop taking no for an answer.”

This isn’t about blaming schools. This part matters enormously to me. It would be very easy to turn a story like Joanna’s into parents versus professionals. I don’t want to do that. Neither does Joanna. In fact, one of the things I admired most during our conversation was the amount of reflection she had done on her own journey. She spoke openly about things she wished she had understood earlier.

She also talked about teachers working incredibly hard and about not wanting to be seen as the “difficult parent”. She wasn’t trying to work against school. She wanted people to understand what selective mutism was and what it wasn’t. That distinction is incredibly important.

Because teachers cannot implement knowledge they have never been given. Speech and language therapists cannot confidently support selective mutism if they have not received appropriate training. Parents cannot be expected to navigate systems they don’t understand. We need to stop standing in our separate corners.

Parents, schools and therapists need to speak the same language. This was perhaps the biggest point of connection between Joanna and me.

• Parents see their child at home.
• Teachers see the child at school.
• Therapists may see the child for a tiny snapshot of their week.
• Each person holds a different piece of the puzzle.

The problem comes when those pieces are treated as competing versions of the child. They aren’t. They are information. A child who talks, laughs and communicates freely at home but freezes in school isn’t showing us that the parent is exaggerating or that the school is doing something wrong. The child is showing us something about their experience of different environments. We need to become curious about that difference.

• What changes?
• Where does the child feel safest?
• Who are they comfortable with?
• When are they able to participate?
• What makes communication easier?
• What increases the pressure?
• What is the child already telling us without words?

That is where parents are invaluable.

And it is also why I feel so strongly about sharing good resources and bringing people

together.

Over the years, my YouTube channel has become much more than a place for me to talk

about selective mutism. I want it to be a place where we can hear different voices parents, therapists, people with lived experience, authors and other professionals and share good practice rather than working in isolation.

I don’t believe we should be competing over who has the “right” approach. We should be asking:

What can we learn from each other that will help this child?

That same belief is one of the reasons I created my Selective Mutism School Guide for

Nursery and Primary School. I kept seeing the same problem: parents understood one thing, schools had been told something different, and therapists were sometimes working from another perspective again.

The guide was my attempt to put practical information, language and strategies in one

place so that the adults around the child can begin from the same understanding.

Not to turn teachers into therapists. Not to give parents another enormous job to do. But to help everyone look underneath the silence and ask the same question:

What does this child need from us to feel safe enough to participate and communicate?

ANNA’S YOUTUBE CHANNEL

SELECTIVE MUTISM SCHOOL GUIDE

Safety has to extend beyond one classroom.

Another part of our conversation stayed with me. Joanna talked about how easy it is for a well-meaning teacher to make one classroom feel safe while forgetting how many environments a child moves through during a school day.

• The corridor.
• The playground.
• The lunch hall.
• Different classrooms.
• Different adults.
• Transitions.
• Unexpected questions.
• Supply teachers.

For a child with selective mutism, we cannot create safety with one trusted adult and assume the job is finished. It needs to become a whole-school understanding. And this is why training matters so much. We do not need every teacher to become a selective mutism specialist.

We need teachers to recognise what they are seeing.

We need them to know what can inadvertently increase pressure. We need them to understand that silence is not necessarily shyness, defiance or unwillingness.

And we need clear routes to people with more specialist knowledge when that is

required.

Early intervention is not just kinder. It makes sense.

One of the strongest arguments Joanna has made through her campaign is that leaving

children unsupported can become extraordinarily expensive later. When anxiety becomes entrenched, children may require substantially greater educational and therapeutic support.

But imagine if we changed the starting point.

• What if nursery practitioners understood selective mutism?
• What if primary teachers recognised the early signs?
• What if parents were believed when they said, “This isn’t the child I see at home”?
• What if schools knew what to do before difficulties became entrenched?
• What if specialist therapists could guide the adults around the child early, rather than
• families waiting until everything had reached crisis point?

That is the model I want to see.

Not only in West Sussex. Across the UK. And particularly here in Scotland, this is something I feel incredibly strongly about.

Parents know their children best. This doesn’t mean parents have all the clinical answers. It means they hold knowledge we cannot afford to dismiss. As professionals, we bring our training, clinical reasoning and experience. Parents bring something we can never reproduce: years of knowing that particular child.

• Their expressions.
• Their tiny signals.
• Their history.
• Their relationships.
• The situations in which they flourish.
• The situations in which they disappear into themselves.
• The things that make them feel safe.

The strongest support happens when those two forms of expertise meet. Not when one sits above the other. Joanna’s story is bigger than West Sussex, what Joanna has started matters because it demonstrates what can happen when parents come together, professionals listen, schools are supported and decision makers are presented with evidence that cannot simply be ignored.

Her story isn’t finished. Her campaign isn’t finished either. But perhaps that is exactly why I wanted to share it now. Because change doesn’t begin when we finally have the perfect national pathway. Change begins when somebody asks:

Why are we accepting that this is simply the way things are?

I would love to see Joanna’s work become part of a much bigger conversation.

I would love to see similar conversations happening in Scotland, Wales, Northern

Ireland and throughout England.

I would love to see parents listened to earlier. I would love to see teachers supported rather than blamed. And I would love speech and language therapists and other professionals to feel confident enough to say, “I may not have all the answers, but I know where to find them,

and we are going to work this out together.” Because selective mutism support should never depend upon how loudly a parent is able to fight.

A quiet child still deserves to be noticed. A parent shouldn’t have to become a campaigner before somebody listens. And professionals should have the knowledge and pathways they need to help.

That is why Joanna’s campaign matters.

And that is why I hope her story travels much further than West Sussex.

Support Joanna’s campaign

Joanna’s Change.org campaign calls for children with anxiety and selective mutism in

West Sussex to receive appropriate support.

JOANNA’S CAMPAIGN

The link for new social media page where I’ll start blogging my campaign journey is:

Joanna Stephenson – Selective Mutism Advocacy

Petition link is: https://www.change.org/p/stop-leaving-children-with-selective-mutism-without-support-in-sussex/dashboard/home?source_location=user_profile_started