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_

Extraordinary Fundraising from Ultra-endurance Enthusiast and Guinness World Record Holder, Dr Tony Hopkin

This month we spoke to Dr Tony Hopkin who describes himself as "a husband and a father to two amazing boys (one is autistic)". Tony is an ultra-endurance enthusiast who currently holds the Guinness World Record for the Longest Single-Event Triathlon. For the past couple of years, he has been raising money for SEND-related charities by undertaking ultra endurance events.

In 2026, Tony aims to take it up a notch by attempting three Guinness World Records and a world first ultra-triathlon. The Guinness World Records are the most duathlon legs completed in 24 hours (indoor), the most duathlon legs completed in 24 hours (outdoor), and the most consecutive days doing a triathlon (indoor); and the ultra-triathlon is to consecutively swim, bike and run the 13 publicly accessible lakes in the lake district, in what will be 72km of swimming, over 72km of cycling and over 72km of running.

 

Tony is doing this incredible set of challenges in support of three SEND charities, including SOS!SEN, which is wonderful - thank you Tony!

You’ve already achieved something extraordinary by breaking the Guinness World Record for the Longest Single-Event Triathlon earlier this year. What inspired you to take on ultra-endurance challenges in the first place? 

A few years ago, I stumbled into Triathlon after joining one of my wife’s friends for a triathlon with about 3 weeks training and having not swam or cycled in about 20 years. I just managed to get through a sprint distance triathlon (750m swim, 20km cycle and 5km run) but as they say, I got the bug! From there I started training all 3 disciplines and a year later, I signed up to an iron-distance triathlon (3.8km swim, 180km cycle and a marathon). After a conversation with a work colleague who said he would sponsor me for doing it, this then led to a charity effort, which spiralled into a year of endurance events (one endurance event each month for 12 months) to raise money for SOS!SEN. Over that year I did various things from ultramarathons to ‘grand fondos’ (big bike rides) to marathon swims to iron-distance triathlons. I enjoyed the challenge, found that I had a knack for ultra endurance in that I could train hard, recover well and endure pain, and most importantly I realised that I could raise vital funds for and awareness of charities who help support people with different needs or use ‘sport for purpose’. This ability to raise awareness and funds led to 2025 and the Longest Single-Event Triathlon world record, where I swam 16km, cycled 400km and ran 100km continuously.  

You kindly supported SOS! Special Educational Needs in 2024 by taking on a challenge each month. What drew you to our cause and the work we do with families of children with SEND? 

One of our boys is Autistic, and at the time my wife and I were navigating the complex world of diagnoses, SEND legislation, EHCPs, excessively long waiting times and our son struggling in school. This experience highlighted a number of things, such as: the general lack of knowledge regarding SEND and children with SEND (including my own ignorance pre-2024), a lack of mainstream support for children and families navigating this complex world; and a general lack of awareness of the issues within the wider system. Whilst we were seeking guidance, we came across SOS!SEN and the information you provide and found it invaluable and wanted to support your work.

What has your own journey as a father of a child with SEND looked like? Where did you find support? 

My journey started before I realised, my son has always had a lot of energy, was fidgety, sought sensory input etc. but at the time I didn’t realise why. In his 2nd year of primary school, everything started to become clearer when we were called-in to discuss a suspicion of SEND. He was referred to CAMHS and then the wait began; he continued his time at school with increasing meltdown and exclusions. To speed up our search to understand what was happening, we then took the decision to procure a private assessment where he was diagnosed as being Autistic. We provided the school with his report and started the process of attaining an ECHP, hoping for more acceptance and understanding, however, it became clear that the school he was at was not suitable for him – the exclusions were increasing, his sense of belonging impacted, and he felt extremely misunderstood. Fortunately, with his ECHP he has moved to a mainstream school with a specialist autism base attached to it, and he is happy and doing well – which is mainly because of his mum’s tenacity in chasing people to ensure they fulfilled their obligations. Most support and guidance came from community groups, charities, and paid for consultants and professions – there was very little from anywhere else.    

What’s the biggest lesson you have learnt as a Dad with a neurodiverse child? 

I’d say that it has redefined my view of what is important when it comes to my children’s futures. It’s not grades, it’s not going to university, it’s not a high paid job etc. What’s important is them being happy, them doing something they enjoy, them knowing they are loved and accepted, and that they accept themselves for who they are, and that they know that their future is their own.  

This year you’re aiming to break not one but three world records — can you tell us more about what drives you to keep pushing the boundaries of human endurance? And how many pairs of shoes do you get through?! 

I’m weird, I guess! No, I do these events for a few reasons: firstly, I want to show my children that anything is possible and that resilience can get you through things; second, I hope that by pushing the limits I can do some good and raise awareness of SEND (and the struggles people go through, and to celebrate difference); and finally, these events are symbolic. For example, the longest single event triathlon world record represented how society expects children with SEND to function: 

It was a challenge where you had to follow prescribed rules to the letter, and if you deviated from those rules then the outcome was that you had failed. 

It was a multidisciplinary record that required quick transition between activities (transitions could not last longer than 5 minutes) and if you couldn’t transition in time, you had failed.  

It was a hectic long-distance, multi day event where you needed to maintain focus and concentrate for the duration, you could have no rest or time to process what had happened before.  

To survive the attempt, I needed the same things many SEND children do: coping mechanisms to remain resilient, a support network who figured out my needs - even when I didn’t articulate them clearly; and a clear understanding of the expectations I had to meet and what was coming next. 

I run my shoes into the ground, but I do go through lots of socks! 

The Lake District challenge sounds breathtaking (mentally and physically!): swimming, cycling, and running across 13 lakes consecutively. What excites you most about this world-first attempt? How do you keep yourself focused? 

The Tri-the-13 as I call it, represents that children with suspected ASD (and a host of other needs and disabilities for that matter) are waiting significantly longer than the 13 weeks the guidelines state they should wait for a diagnostic assessment.  

The thing that excites me the most about it is also the thing that is most terrifying – this has not been done before, people have swum all 13 back-to-back in a 72km epic swim challenge, but no one has added the other two disciplines, and I’m keen to find out whether it’s possible!  

To stay focussed I rely on routine. I wrote my training plan ready to start the first week of January and will force myself to follow it religiously until it becomes ingrained. To keep myself accountable, every time I don’t feel like doing one of my planned workouts, I remind myself that it is my choice to do this, and that some children don’t have a choice but to endure the struggles they face every day. 

What message do you hope children and families take away from your record-breaking efforts? 

The message is the same as the one that I hope my children are seeing, it’s to keep going, to remember that we can achieve things that we might feel are impossible at times, and it’s a reminder that support (whether it’s from friends, family, or even strangers) is available and can help us through the dark patches where we feel like giving up. 

You’re raising money for three charities this year - Ambitious About Autism, New Leaf Learning and SOS!SEN - all supporting children with special needs. How do you hope your 2026 challenges will amplify awareness and support for these causes? 

I am indeed and if anyone wants to find out more the details, they can be found here: https://gvwhl.com/NKPXA  

Breaking records and pushing the boundaries of human endurance as you described it earlier (I’m going to use that going forward!) gets people talking, it evokes a reaction and typically gets coverage – my aim is to use that coverage to continue to raise awareness of SEND, of the challenges people go through on a daily basis (not voluntarily) and to highlight the wonderful support services (and hopefully help raise money to assist in the provision) that are provided by the three amazing charities I am working with. 

What role can supporters of SOS!SEN play in helping you reach your fundraising goals — whether through cheering you on, sharing your story, or donating?  

Any support people can provide would be awesome! Sharing the story goes a long way in helping to spread the message and raise awareness. Donations support the charities and their ability to change lives.

Any on-the-day support is hugely appreciated and if people were interested in being independent witnesses or timekeepers (if they have any time keeping experience) for part of any of the attempts, then it will help me to fulfil the requirements of Guinness World Records. Feel free to follow me on Instagram @tonytalkstriathlon or email me at tony@tjhendurance.co.uk 

If anyone reading this is thinking about doing their first swim, bike or run based endurance challenge to raise money for SOS!SEN then please get in touch, I’m a certified triathlon coach and I’d be happy to write you a free training plan. 

If you could sum up your mission in one sentence — the spirit behind these challenges — what would it be? 

I’ve called this year’s set of challenges Endure: Together – acknowledging that there are so many people having to show resilience and mental fortitude to overcome challenges in a variety of different forms. 

A Holiday Message from SOS!SEN's CEO, Richard

 

Happy Holidays from Richard and Shadow

Supporting families through a changing education landscape

Between October and November, our Helpline supported almost 500 people seeking advice, information and reassurance. We have focused firmly on access and responsiveness; call-answer rates have improved from 10% in October 2024 to 29% in October this year. That’s progress, though we’re not pretending its job done, there is still far more demand than capacity.

Our advice centres have been noticeably busier, with more families using face-to-face support to help them navigate increasingly complex situations. To strengthen this further, we have launched a dedicated Grounds of Appeal team. They have already been working with families to prepare clearer, stronger cases and ensure their voices are properly heard.

Alongside direct advice, we are expanding practical learning opportunities. Our programme of webinars continues to grow, covering common challenges and frequent points of confusion in the SEND process. We will be running a promotion in December to make these sessions more affordable at a time when many families are feeling the financial squeeze.

We would not be able to offer any of this without external support. Recent funding includes:

• $10,000 corporate donation from Vitol
• £8,000 from the Barbera Ward Foundation, supporting the launch of our first virtual advice centre for adopters, special guardians and foster carers
• £8,000 from the Bailey Thomas Foundation and £5,735 from the Eveson Trust, both helping to secure the future of our Helpline

We now have 114 volunteers working with SOS!SEN, which is a significant milestone. Their commitment makes an enormous difference; it allows us to speak to more families, run more sessions and respond more effectively. Growth brings challenges, but it also brings momentum. We would not be able to do the work that we do and to support the number of families that we do, without the amazing volunteers we have dedicating their time.

Thank you to everyone who has contributed time, funding or expertise. There’s still a long way to go in ensuring families receive the support they deserve, but together we’re pushing forward.

For those of you who celebrate, I wish you the very best Christmas, for those who don’t, I hope you still get to enjoy some downtime and a chance to recharge.

Richard Orchard-Rowe, CEO

Dr Carrie Grant (MBE) & David Grant (MBE) Talk Neuro-spiciness and the Importance of Community

Carrie and David Grant are BAFTA award-winning broadcasters, vocal coaches, leadership coaches and campaigners. 

Married for 36 years, David and Carrie have 4 children together - Olive, Tylan, Arlo and Nathan. Their family dynamics are shaped by the unique challenges and experiences associated with raising children who have special educational needs, including autism and ADHD. As a result, they passionately advocate for issues related to SEN and inclusion. They have openly shared their experiences navigating the complexities of raising neurodivergent children, including the emotional and practical challenges that come with it.

The team here at SOS!SEN were thrilled to work recently with David and Carrie on a video project for the charity (being launched soon!) They kindly gave up their time and were wonderful enough to do so again for this interview, so thank you sincerely to you both.

Find out more about Carrie and David's work, including their book, 'A Very Modern Family', on their website - www.carrieanddavidgrant.co.uk

How has your understanding of neurodiversity evolved over the years as parents of neurodiverse children? 

David: Our understanding of neurodiversity (all diversities including neuro-typical) and specifically neurodivergence has evolved massively over the years. Back when our children were first diagnosed there was different terminology, Aspergers, high/low functioning, gendered assessments etc. It makes you realise how far we have come and how much difference parents have made to the changes we now see.  

Carrie: Back then there was only negative stuff written about autism, so we discouraged our children from Google-searching “autism” – these days you are far more likely to find positive testimonies. Perhaps we have gone a little too far the other way with the “super-power” narrative but it evens out and I am glad there is so much more to see and read, especially from those with lived experience. 

Can you describe some of the biggest challenges you've faced navigating the SEND system within educational settings in the UK? 

Carrie: Where do we begin? Untrained school staff, educators feeling intimidated by parent knowledge. Teachers simply not knowing what to do or how to work with our children. The system is not set up for our children and so schools either fail the Government directive or fail our children and in most cases the children lose out.  

David: We’ve had children with suicidal ideation and self-harm, school avoidance, violence, permanent exclusion, no school available so children out of school, Local Authority challenges, no access to CAMHs at times, or collaboration between CAMHs and school. We have also had amazing school experiences and when those happen it restores our hope that change will eventually come.

What changes would you like to see in how SEND children and young people are supported in education? 

Carrie: Specifically, we need to prioritise different learners. I hate the idea of segregation for our children. There is an erosion of community around us, so we must intentionally press into working together, our children being together or we will create a two-tier system. This will involve great leadership, flexible leadership, compassionate leadership.  

David: What irks me is seeing the potential in our neurodivergent children being lost, children being traumatised by school and just trying to survive it rather than learning and being prepared for a life where they can dream big dreams.  

Every teacher should have full training on the needs of children. If needs aren’t met, then education is more challenging. Creating compassionate, informed practise makes a huge difference. 

Carrie: I would like our children to feel like they belong. The opposite of belonging is not “not belonging” it is “fitting in”. I want our children to show up as themselves in all their neuro-spiciness and feel like they have a loving community around them, who get them, who celebrate them and value them. 

What have you learned from other parents with children with SEND? 

Carrie: For the past fourteen years we have run a support group in our home with over 300 families. Parents hold so many keys, so gathering community is essential to pass on and to share best practise. We can cry together, laugh together and become educated and informed. 

David: We have Mums and Dads in the group but then I started a Dad’s Dinner Group because I think a lot of Dad’s are really struggling to make sense of everything that is happening to their family, perhaps in different ways to the  Mums. That group is a real lifeline too. 

What role do you think community and peer support play in raising SEND children? 

Carrie: I think it is a life-saving attribute to have. 

What have been some of the most empowering moments for yourselves and your children within the SEND system—times when as parents you have felt truly understood or supported? 

Carrie: When Tylan (24yrs) was in school, I was in constant contact, trying to get them to understand Ty’s needs – I wasn’t asking for much but it was like banging my head against a brick wall. At the age of 16yrs Tylan went to work as an actor on Hollyoaks. All members of the cast and crew were sent on 2 days autism training, which effectively means that a lighting rigger on Hollyoaks has had more autism training than any teacher Ty experienced in his whole school career. Tylan flourished and his life changed because he was seen and understood – it’s not rocket science but there has to be a willingness to learn. 

David: When Arlo had been out of school for 3 years (11-14yrs) because there was no school those years were terrible. We were eventually allocated a school and the first day everyone was wearing face masks (2020). Arlo went up to the Head of the school and said, “Am I allowed to have a nose piercing?” The teacher pulled her face mask down, revealing a nose stud and said, “Well if I’ve got one, I don’t see why you can’t have one.” I wanted to hug that teacher. Small things can make a huge difference. 

What main piece of advice would you give to parents just starting out with navigating the SEND system in schools? 

Both: Join your local Parent Carer Forum, join groups, follow the experts online to see what the latest developments are. Look at the “Local Offer” on your Local Authority website – this shows everything that’s available in your area.