Summer stats from CEO, Richard Orchard-Rowe

As we start enjoying some sunnier days, we wanted to share an update on everything SOS! Special Educational Needs has been up to this year so far. CEO of the charity, Richard Orchard-Rowe shares this update.

As we move through another busy and impactful year, I want to take a moment to reflect on what we have achieved together and thank everyone who has helped make this possible.

So far this year, we have supported more families than ever before. Our advice centres have welcomed 514 families, an increase of 192 compared with the same period last year. Our helpline team has also seen a significant rise in demand, answering 786 more calls than we did last year. Across all of our services, we have already interacted with 3,863 families, each one seeking support, guidance, and advocacy during what can often be challenging times.

These numbers tell an important story. Behind every call, appointment, and conversation is a child, young person, or family who needed help navigating the education system and accessing the support they deserve. We are proud to stand alongside them and remain committed to ensuring that every child has the opportunity to receive a fair and equitable education.

This year has also seen us continue our campaigning work. We actively supported the Save Our Children's Rights campaign and joined fellow campaigners at the protest in Parliament Square to stand with the SEND community in response to the Government's proposed White Paper. We will continue to raise our voice, challenge inequality, and fight for the rights of children and young people whose needs must not be overlooked.

As we celebrate Volunteers' Week, we also want to recognise the incredible contribution made by our volunteers. Quite simply, we could not achieve what we do without them. Whether supporting families directly, answering calls, helping at events, contributing behind the scenes, or lending their expertise in countless other ways, our volunteers are at the heart of our charity.

To every volunteer who gives their time, energy, skills, and compassion to support our mission: thank you. Your dedication makes a real and lasting difference to the lives of thousands of families every year, and we are enormously grateful for everything you do.

Together, we will continue to champion the rights of children and young people, support families when they need us most, and work towards a future where every child has access to the education and opportunities they deserve.

Educational Psychologist Dr Stephanie Satariano Talks Parental Intuition, the SEND Landscape and Her Own Experience as a Mum of Two

This month SOS!SEN spoke to Dr Stephanie Satariano, a chartered Educational Psychologist (Neuropsychology). Stephanie has a special interest in psychological and neuropsychological assessments of children with a range of neurological and neurodevelopmental problems.

Her Doctoral research was in gifted and talented pupils and how to maximise their educational attainment. Stephanie also has a strong interest in early intervention and working with children in the early years, so as to maximise their development long term. This is through direct work with the children as well as through supporting parents and school.

Stephanie has already supported SOS!SEN as a keynote speaker at their recent team day, so we're very grateful to her for taking the time to answer some of our questions - thank you Stephanie! Check out her LinkedIn here.

You’ve supported families through EHC needs assessments and SEND tribunals. What systemic challenges do you see most often, and what changes would make the biggest difference?

Having personally supported a significant number of families through the often-complex journey of securing appropriate special educational needs (SEN) provision, and having consulted with close professional colleagues, including Educational Psychologists and other SEN specialists, I can attest to the profound difficulty in isolating a single "biggest challenge." The landscape is riddled with obstacles, creating a multi-faceted problem.

However, after years of observation and direct involvement, a core issue consistently emerges: the breakdown of effective communication.

In my view, a significant number of the frustrations, delays, and ultimately, the disputes that escalate to the tribunal level, are rooted in a fundamental lack of meaningful dialogue and relationship-building between Local Authority (LA) professionals and families.

If LA professionals were afforded the necessary time, resources, and institutional support to genuinely invest in building stronger, more collaborative relationships with families and to understand their lived experience, I feel that the entire process would be different. When both parties feel heard, the collaborative creation of an Education, Health, and Care Plan (EHCP) becomes possible—a plan that genuinely meets the young person's needs while remaining within the practical capabilities of the Local Authority to uphold.

Crucially, establishing this communicative and collaborative foundation would dramatically reduce the reliance on the costly, emotionally draining, and time-consuming tribunal process. Preventing escalation is not just a benefit to the family's well-being, but a significant strategic and financial gain for the Local Authority, allowing resources to be redirected from legal battles back into frontline provision. It will also reduce pressure on families, which is ultimately in the young person’s best interest. 

How do you ensure that children’s voices remain central, especially in complex medical or educational cases?

Hearing the young person's voice is often the most challenging aspect of my work. It's a persistent difficulty, as some children, exhausted by meeting numerous professionals, are reluctant to speak to me. I respect this reluctance, viewing their non-engagement as a valid form of communication that speaks to the pressure and strain they are experiencing. Moreover, meeting a new person can be overwhelming, and they just can’t engage. Some young people prefer to email their views at a later time, which can be really helpful.

My general approach in meetings is to keep the focus entirely on the young person. This means no discussion about them while they are present, and never making them wait outside. I maintain full transparency and honesty, assuring them they are in control and do not have to participate in any activity. In the clinic, I work hard to create a comfortable environment, enabling them to relax and "unmask" as much as possible.

To ensure their voice is truly heard, I triangulate information from multiple sources: parents' perspectives, school observations, the views of other professionals, and all relevant documentation.

Parents often worry about whether they’re “overreacting” or “missing something”. What signs suggest it’s time to seek a psychological or neurodevelopmental assessment?

I cannot stress enough the importance of parental intuition. As a parent, you are the world's leading expert on your own child. You have a unique, 24/7 perspective, observing them across countless contexts and environments—at home, with friends, during moments of triumph, and periods of challenge. You see all their different sides, their unique personalities, and the subtle shifts in their behaviour that an external professional might miss.

This deep, intimate knowledge means that if you have an persistent feeling, a persistent whisper of intuition, that something isn't quite right with your child's emotional wellbeing, behaviour, or development, it should not be dismissed. Please, trust that feeling. It is often the most reliable early warning system you have.

Often, the simple act of having an initial conversation with a qualified professional—a child psychologist or psychotherapist—can be profoundly helpful. This conversation provides invaluable clarity. We can help you process what you are seeing, normalise certain experiences, identify underlying factors, and, crucially, help you establish a constructive, tailored action plan. This plan might involve simple home-based strategies, or it may suggest a pathway for further assessment or support. The goal is always to empower you to support your child effectively and collaboratively.

What are the biggest myths you encounter about autism, ADHD, learning difficulties, or neuropsychological conditions?

It is a common, though deeply misleading, sentiment to hear phrases like, "Everyone has something," or "Everyone is a little bit on the spectrum." 

No, everyone is not.

While these statements are often made with the intention of fostering inclusion or minimising the perceived stigma associated with neurodevelopmental differences and mental health challenges, they fundamentally misunderstand and diminish the reality of these conditions.

These are not minor personality quirks or occasional difficulties that everyone experiences. These are real, clinically defined conditions that represent significant, persistent, and often complex difficulties. They are characterised by diagnostic criteria established by medical and psychological professionals, not by fleeting moments of stress or unique personal preferences.

When a young person or family is dealing with a condition like Autism Spectrum Disorder (ASD), Attention Deficit Hyperactivity Disorder (ADHD), severe anxiety, or other mental health or neurodevelopmental differences, they are contending with challenges that have a significant functional impact on their daily lives. To suggest that "everyone is on the spectrum" or "everyone has a bit of that" is a form of diagnostic dilution. It strips the condition of its gravity and implies that the intense support, therapy, and adjustments families require are merely overreactions to normal life struggles.

Crucially, just because you, as an external observer, do not see the difficulties overtly, it does not mean they are not profoundly present. Many families and young people become adept at "masking" or internalizing their struggles, often at great personal cost, in an attempt to fit in or avoid judgment. Families are not "dramatising" their struggles; they are articulating the need for genuine, often specialist, support for a child who is trying to function in a neurotypical world. Acknowledging the reality and depth of these difficulties is the first step toward providing appropriate, compassionate, and effective intervention.

What role can an Educational Psychologist or Neuropsychologist play in supporting a family through a Tribunal?

In my view, our role extends beyond the immediate, obligatory duties outlined in legislation. While there is the clear, statutory requirement to conduct comprehensive assessments and produce reports that directly inform and dictate the provision of support for a child, this only represents one facet of our work.

I believe an equally, if not more, vital component of our practice lies in the educational and empowering support we provide to parents. It is critical that we focus on really helping parents to achieve a deep and nuanced understanding of what support is truly necessary, why it is required, and, crucially, how to implement it effectively to best support their child's development and well-being.

One of the biggest and most essential roles I feel I play is in preventing the trap of over-provision and therapeutic saturation. There is a common misconception, often driven by anxiety and a desire to "fix" the problem quickly, that more therapies, more intervention, and more structured support automatically leads to better outcomes. In reality, this is frequently counterproductive. Children, particularly those with complex needs, are highly susceptible to burnout. Their cognitive resources are already heavily taxed by navigating a world not always built for them. Therefore, we must advocate for balance. Kids fundamentally need time to just be kids, to relax, to engage in unstructured play, and to pursue their own interests without an agenda or a therapeutic goal attached. This ‘downtime’ is not wasted time; it is essential for consolidating learning, fostering natural social interaction, developing autonomy, and simply allowing their nervous system to regulate. I help parents to embrace a strategic, quality-over-quantity approach, ensuring that the child’s schedule supports their development without sacrificing their childhood or well-being.

What changes would you most like to see in the SEND landscape to make life easier for families?

The most immediate and obvious barrier is securing adequate funding, which impacts the breadth and quality of services available to families.

However, beyond the purely financial constraints, a crucial factor is the quality of understanding and subsequent communication between families and the statutory professionals managing their child's case, particularly their Special Educational Needs and Disabilities (SEND) case workers. This relationship is incredibly significant. I have observed a profound difference in a family's overall stress levels and their ability to navigate the complex system when they have established a strong, positive, and communicative working relationship with their assigned SEND case officer. A constructive relationship built on mutual respect and clarity can transform the experience from an adversarial battle into a collaborative partnership focused squarely on the child's needs and best outcomes. This positive dynamic can significantly reduce the emotional burden on parents, leading to more efficient processes and timely support delivery.

Has understanding attachment, behaviour, or emotional regulation professionally changed how you respond to challenging moments as a parent?

Ha! That is a good one. I like to think my professional life and training has given me some kind of parenting superpower, and I truly strive every day to focus on the core principles of my work: building a strong, secure attachment with my boys and consistently supporting their journey toward emotional regulation. I preach about being the 'emotion coach' and the 'secure base,' and I genuinely aim to embody that.

However, I am human. I carry my own emotional baggage, my own unique triggers, and the simple reality of exhaustion and stress. Consequently, I very often find myself falling short. I do not always handle those common, heightened family situations—the meltdowns, the sibling spats, the defiance—with the calm, measured, and perfectly attuned response I know intellectually is best.

It's a running joke I have with myself: I can almost always see my 'psychologist self' standing over me during these moments, looking down with a sharp, judgmental 'tutting' and a palpable shaking of the head, essentially saying, "You know better, Stephanie." In that instant, I am acutely aware that my response was far from the ideal, evidence-based approach I advocate for in my practice.

The critical difference, though, lies in what happens next. While I may not nail the initial reaction, I work incredibly hard on the principle of rupture and repair. I try to return to the situation once everyone is calm, acknowledging my mistake, apologising clearly and genuinely ("I am sorry I shouted; that was my big feeling taking over, and it wasn't fair to you"), and then walking them through how we could have both handled the situation better. This commitment to repair is, in my professional opinion, just as vital for a secure attachment as getting it right the first time. It teaches them that mistakes are inevitable, apologies are powerful, and our relationship is resilient enough to withstand conflict.

Do you ever find it difficult to switch off the psychologist in you and simply be “Mum”? How do you manage that balance?

It's hard to say honestly. Both of my sons are incredibly energetic and experience big emotions. My eldest has ADHD, high-level anxiety, and demand avoidant traits (not diagnosed), and is also a high-masker. My youngest, who is still only five, likely also has ADHD. Because of this, they both require parenting that goes above and beyond what is considered "typical."

While my eldest is quite good at letting me know when he's had enough of the "psychologist stuff" and just doesn't want to engage with or discuss emotions, I find my professional skills have become completely internalised (also my youngest quite enjoys the psychobabble!). I genuinely love analysing and understanding human behaviour, and I don't think I can—or want to—separate my professional and personal ways of thinking.

Autistic Speaker, Dean Beadle, Speaks to SOS!SEN About Empowering the Next Generation of Autistic Young People to Never View Themselves Through a Deficit Lens

In this candid conversation, autistic speaker, inset trainer and singer, Dean Beadle, joins us to share his lived experience, challenge misconceptions, and reflect on what true inclusion should look and feel like for autistic young people and their families. His insight is as grounded as it is uplifting - a reminder of why listening to autistic voices matters.

Dean has spent over two decades speaking across the UK and abroad about his experiences. He is passionate about challenging the barriers that exist in society for neurodivergent people, and is patron of three autism-related charities. We're delighted to feature this interview, so a big thank you to Dean.

You can follow Dean on his Instagram here - deanbeadlespeaker and his TikTok here - dean.beadle

When you compare your own school experience to what you see in schools today, what has genuinely improved — and what hasn’t shifted nearly enough?

Initially in primary school I was seen through a very behaviourist lens and was suspended more times than you can count. Mum had to battle to get my needs understood and met. Sadly, thirty years on, I’m still hearing too many parents tell me that they are coming up against the same lack of understanding in mainstream schools. In that sense, we haven’t made nearly enough progress in making schools fully inclusive and accessible. Behaviourist approaches are a worrying trend in some specialist provisions too. With that said, I’m heartened by how many brilliant teachers and school leaders I work with who are genuinely invested in getting it right for autistic learners. I get to see so much excellent practice in both mainstream and specialist settings. I’m encouraged that autistic advocates have ever bigger platforms to challenge attitudes and create change. We are empowering the next generation of autistic young people to never view themselves through a deficit lens. All of that gives me hope.

You’ve spoken about masking and anxiety in school. How did those pressures show up for you day‑to‑day as a child or teenager?

When I joined secondary school, I very much remember feeling that I needed to keep a low profile. In order to survive, I felt I had to mask and blend in. I remember swallowing down anxiety. I was in survival mode.

As I often explain in my inset training, just because you can’t see the anxiety and distress on the surface doesn’t mean it isn’t there. The child may well be bottling all that up until they can get to a space where they feel safe to be their authentic selves. I’m forever saying to teachers: “just because you can’t see distress, doesn’t mean it isn’t there. Believe what parents tell you.”

What do you see as the most harmful myths about autistic pupils that still influence school policy or practice?

How long have you got!? There are so many- and this situation is amplified by so-called ‘experts’ spouting ableist nonsense on their platforms and in the press. But in terms of harmful myths in a schools context, I’d say the most current one is the notion that many autistic learners are “choosing” not to attend school. What a load of old rubbish!

There’s no choice about it. The reality is they are utterly burnt out from inaccessible and often hostile environments. Its high time we realised it’s not a case of ‘wont’ it’s a case of ‘can’t’. Local authorities must realise that the goal shouldn’t be about ‘getting them back through the door’, but acknowledging and addressing the system-wide accessibility issues that traumatised those learners in the first place. This starts from properly listening to what autistic young people and their parents are saying.

How do you help today’s educators reframe behaviours they might label as “challenging” or “defiant”?

I’ve spent my career working with schools staff and supporting them to realise that instead of focussing on behaviour, we must focus on needs. Instead of seeing aggression, anger and violence, we must reframe that as distress, overwhelm and dysregulation. Our focus must be on shifting the environment to meet needs.

How do you help schools move from “awareness” to genuine inclusion that changes autistic pupils’ daily lives?

I’ve spent a lot of this past year speaking at inclusion conferences, and a key message in my keynotes has been that inclusion isn’t a good enough aim anymore. I think we need to shift our objective from inclusion towards fostering a sense of belonging. Do our autistic learners feel they truly belong in the schools they attend? That’s the question we need to be asking.

What do you say to educators who feel overwhelmed or afraid of “getting it wrong” when supporting autistic learners?

Listen to your learners. Believe what they tell you. Invest in building trusted relationships with them and their parents. Everything boils down to relationships. Trusted relationships are the foundation for everything else. Be brave and be the best ally to your learners and their families, because they really need you.

What message do you want parents to hear about supporting autistic children who come home exhausted, dysregulated, or shut down after school?

Give your child time and space to recover and regulate. Needing to be alone does not mean a rejection of the family- they just need time to recover from the sensory and social onslaught of the school day. Reduce demands and expectations and let home be a place where they can rebuild their spoons. Be the safe space.

If you could speak directly to parents who are in the thick of EHCP battles, exclusions, or school-based trauma, what would you want them to take away from your story?

At a time when so many others were judgemental, hostile and downright ableist towards me, my mum was my biggest champion, and she didn’t rest until she changed people’s view of me. I owe my mum everything for that. Your kids know that you’re in their corner- and that means the world.

Initial Reflections on the Government’s SEND White Paper

A message this month from the CEO of SOS! Special Educational Needs, Richard Orchard-Rowe and the charity's Legal Officer, Eleanor Wright, about the recently released Government White Paper.

The Government has now published its long-awaited SEND White Paper. Many families, professionals and organisations have been waiting a considerable time for clarity about the direction of future reforms, and the publication marks the beginning of an important period of scrutiny and debate.

At SOS!SEN, we are currently reviewing the detail of the proposals. In order to do this carefully and responsibly, we have established a dedicated working group to go through the White Paper in depth and consider what the proposals may mean for children and young people with SEND, their families, and the professionals who support them.

As part of this process, we will also be hosting a webinar in the coming weeks. This event will include a panel of parents who will be sharing their views and reflecting on what the proposals could mean in practice. Hearing directly from families is essential, and we want to ensure their perspectives remain central to the conversation.

While we are still analysing the full detail, our initial reading of the White Paper raises several serious concerns.

First, there appears to be a shift in emphasis that distances local authorities from responsibility for the challenges within the system, while placing greater expectations on schools to manage increasingly complex needs. Schools are already under significant pressure, and we are concerned that these proposals could further strain the system. In particular, there is a real risk that increased pressures could contribute to the loss of experienced and dedicated teaching staff at a time when they are needed most.

We are also worried that the proposed approach may create a more adversarial experience for parents. Many families already find the system difficult to navigate, and any reforms should aim to rebuild trust and cooperation rather than deepen conflict.

Another concern is that the voice of families appears to be increasingly absent from the proposed reforms. Parents and carers bring vital knowledge and experience about their children, and meaningful partnership with families must remain at the heart of any effective SEND system.

Most concerning of all is the direction of travel regarding legal protections for children and young people with SEND. Despite extensive lobbying from families and organisations across the sector, the proposals appear to move towards removing some of the legal rights that currently protect children with SEND. These rights have long provided an essential safeguard for families when support is not delivered as it should be.

SOS!SEN will continue to speak out about these issues. We are also working alongside the Save Our Children’s Rights campaign to ensure that the voices of families are heard and that the Government fully understands the potential consequences of these proposals.

There are two key things we want families to know at this stage.

First, nothing has changed today. The current law remains in place, and the rights of children and young people with SEND continue exactly as they did before the publication of the White Paper.

Second, we are now entering a consultation period. This is a crucial opportunity for families, young people and professionals to share their views. Your voices matter, and collective feedback will play an important role in shaping what happens next.

We will continue to keep our community updated as we work through the proposals in detail and as further opportunities arise to contribute to the consultation. In the meantime, we encourage families to stay engaged, take part in discussions, and add their voices to this important debate.

Influencer Lauren Frost - The Honest Mum - on the Magic of Being Human, Taking a Breath and Remembering You’re Not Alone

 

As awareness grows, more and more celebrities and influencers are speaking out about their experience of having SEND themselves or experience as parents supporting their child with SEND navigate the world. Lauren Frost, AKA the_honest_mum_, an online influencer, is one such parent, often posting about her experiences with no filters and no sugar‑coating, just real life in all its messy, beautiful chaos. With her trademark mix of humour, vulnerability and straight‑talking honesty, she has built a community where parents feel seen, supported and a little less alone.

This month we have been lucky enough to interview Lauren about her journey into understanding neurodiversity, the emotional highs and lows of parenting with a neurospicey child, and the reality of navigating the SEND system. This conversation isn’t about perfection - it’s about a Mum's love, learning on the go and finding strength in shared experience. Thank you Lauren.

How has your own understanding of neurodiversity evolved since becoming a parent?

I was fortunate enough to work in a specialist school prior to having children, and then I worked with children and adults with additional needs in my career, so I felt like I had knowledge but not so much of an understanding. It’s really easy to understand struggles in principle, but when you haven’t slept properly and your child is in a constant state of overwhelm it’s really difficult to regulate your own emotions to be able to regulate someone else’s. So whilst yes, I understand more, I feel like I’m always learning and trying to adapt not only my skills, but also my expectations.

What has your experience been like in securing SEND support in schools? What have the challenges been?

When people told me I’d have to fight for everything I thought I was ready…I was not! We had the local authority saying the school could meet the need whilst the school was crying out that they couldn’t, and my son was sat in a hallway on his own with a TA (Teaching Assistant) as he found the classroom too overwhelming. We’re very lucky that we’re in a specialist school now but the biggest challenge for me was the gaslighting from the local authority. They made me question if I was pushing for the right thing or if I had just decided I wanted it. In one email where they declined (after never meeting him or where teachers said they couldn’t meet need) they emailed me saying, “we know you WANT him to go to a specialist school but that isn’t what we’ve decided he needs’. Again they hadn’t met him even once when sending these emails. I do just want to take a moment to say that we were very fortunate with the school my son went to. They truly valued him as an individual and didn’t put him into situations he wouldn’t be able to handle, the staff fought for him and prioritised his wellbeing over trying to force him to fit into a system where he doesn’t. I know not everyone has that luxury so I do just want to say I’m very grateful for that.

Lauren with her son, Teddy.

How do you manage the emotional highs and lows that come with parenting neurodiverse children, especially when support systems fall short?

I’d love to say to you that I have it all figured out but I really don’t. I find something that works once to support them might not work again. The only way I’ve found that truly helps is to look after myself. By going to the gym and blasting some music I am able to regulate myself to help me be calmer. I also find sharing what is happening helps. If I share a story on Instagram saying something has happened I’ll get a handful of replies that just remind me I’m not alone. Even though it doesn’t physically change the outcome of what’s happening, to know I’m not experiencing it alone is so powerful.

What do you wish more people understood about the realities of raising neurodiverse children?

That it is 24/7. What might seem like an over-reaction over something small is usually an accumulation of something much bigger. It isn’t often the big things that break you, it’s the constant behaviours that are unrelenting. If my son becomes dysregulated he won’t just cry for 5 minutes, it can be 2-3 hours. In that time he will calm and then just ramp back up again to full hysteria. It’s really hard to understand how constant it is if you don’t see it, especially if you have a child like mine who’s allergic to sleep!

What kind of support - online or offline - has made the biggest difference in your parenting journey?

Just talking and feeling less alone. Knowing I’m doing the best I can and that actually, regardless of what the internet would have you believe, the fact you lost your temper because you’re completely overstimulated isn’t going to ruin your child's life. You can only do what you can do with what you have. Just take a breath when you can get your head above the water and remember you’re not alone.

What advice would you give to mums who are just beginning to navigate the SEND system?

Don’t compare yourself to how others carry their load. You are not them and they are not you, and how you are feeling isn’t a reflection of your abilities or love. I personally believe the system is broken and I felt like I had to prove my son wouldn’t fit into the main puzzle before he could be put into a place that could accommodate that his puzzle piece was a different shape. Keep fighting and know that the right placement helps support so many other parts of life like emotional regulation and happiness levels.

If you could change one thing about how society or schools approach neurodiversity, what would it be?

To think about what the system was first created for - to create compliant workers. Then think about the present and future our children will be born into. Why are we still punishing children who cannot sit still? There should be lessons designed in a way where the same skills are learnt through movement and doing rather than textbook learning. I’m not saying school isn’t important because it is, but the fact that children with additional needs have their behaviour corrected 5x more than neurotypical children makes me feel really sad. Sad that we’re affecting not only the wellbeing but the sense of worth these children have at a young age when they can’t conform to how school thinks they should act. I wish the system would split by learning ability and allow children to learn in a way that most suits their needs.

How do you nurture your children’s confidence and self-worth in a world that often misunderstands neurodiversity?

My son currently lacks self-awareness so this isn’t something we actively do. He knows he has autism and that means that his brain just works a bit differently. There are things he is really good at and things he finds harder but that is the same for everyone. The world is constantly evolving and there is so much more understanding now than there was. Often older people struggle with behaviours they are not used to seeing. I wear a sunflower lanyard when we are out that has a card in that says ‘my child has autism’. I feel this is all the explanation people deserve. The lanyard means ‘we may need a bit more time or a bit more space for one reason or another’. I will always try to nurture that we are all different and have different strengths and weaknesses and that is part of the magic of being human!

Lauren with her family.

Follow Lauren's Instagram page here - the_honest_mum_