Category: Uncategorized

  • 📰 BBC News: Council Refused EHCP Due to Cost – Why Every Parent Should Be Worried

    This week, the BBC published a story that hit hard for many of us in the SEND community.

    A mother in Herefordshire fought for an Education, Health and Care Plan (EHCP) for her son — a legal document that should ensure support for children with special educational needs. But what did the council say?

    “It’s too expensive.”

    Let that land. They didn’t argue that her son didn’t need the help. They just didn’t want to pay for it.


    ⚖️ But EHCPs Are a Legal Right… Aren’t They?

    Yes — right now, they are. If your child has needs that require additional support beyond what a mainstream school can provide, your local authority must assess and provide an EHCP if it’s necessary.

    But this BBC report shows that some councils are already bending the rules — and using cost as an excuse to deny support.


    💥 Why This Story Matters

    This isn’t just one case. It’s a warning sign of what’s coming:

    • Councils are under financial pressure
    • Some are prioritising budgets over children
    • If EHCPs get diluted or scrapped in future reforms, parents may lose the legal power to challenge these decisions

    If this mum hadn’t fought back — and gone public — her child could have been left without the support he needs.


    💡 What Can You Do?

    1. Know the law
      The law hasn’t changed. Your child’s needs — not council budgets — must guide decisions about EHCPs.
    2. Call it out
      If a council refuses support based on cost, that’s unlawful. Ask for it in writing. Challenge it. And don’t be afraid to speak up.
    3. Use AskEllie.co.uk
      AskEllie is a free tool built by parents, for parents. It can:
      • Explain your rights in plain English
      • Draft responses to unlawful council letters
      • Help you build your case and stand firm

    ❤️ You Are Not Alone

    This story struck a nerve because it’s happening to too many of us.

    But with the right tools, the right knowledge, and a growing community, we can push back.

    Don’t let them tell you your child is “too expensive.”
    Your child is worthy. Deserving. Protected by law.

    👉 Get support at AskEllie.co.uk


  • 📢 What You Might Have Missed: SEN News Round-Up (May–July 2025)

    It’s been a chaotic few months in the world of SEND — from proposed reforms to shocking council behaviour. If you’ve been busy just surviving (we get it), here’s your catch-up of everything that matters.


    ⚖️ 1. Councils Saying “No” to EHCPs Because of Cost (BBC News, July)

    Let’s start with what’s got everyone talking:
    A council in Herefordshire tried to deny an EHCP based purely on financial cost — not the child’s legal right or need.

    🔗 Why it matters:
    This is unlawful. EHCPs are not optional if your child needs one — no matter the price tag. But it’s a worrying sign of what’s coming as more councils hit financial crisis points.

    👊 What you can do:

    • Ask for council decisions in writing
    • If they cite cost, you have grounds to challenge
    • Use AskEllie.co.uk to help write back in plain English

    📉 2. The 2025 SEND Reforms: Delays, Dilution & Confusion

    The government’s long-promised SEND reforms are still unclear. While the DfE claims the aim is to create “consistency,” many parents fear it means less legal protection and more postcode lotteries.

    👀 What we know:

    • EHCP “standardisation” trials are happening in pilot areas
    • The goal is “digital EHCPs” and national templates
    • Concerns are rising that individual needs will be ignored in favour of system-led decisions

    💬 What parents are saying:
    “If they scrap the legal bit, councils will do even less than they already do. EHCPs are barely enforced as it is.”


    🚨 3. Section 19 Failures Continue to Spike

    Section 19 of the Education Act says that children who can’t attend school must still get a suitable education — but families across the country are reporting months (or years) with no provision.

    ⛔ No tutors
    ⛔ No plans
    ⛔ No education

    📌 What to do:
    AskEllie has a built-in Section 19 explainer and draft response tool if your child is out of school. Use it before things escalate.


    🧠 4. CAMHS & Assessment Waits Still in Crisis

    Many families report that ADHD and autism assessments are now taking 2–4 years in some NHS regions. Some parents are being told that private reports won’t be accepted, or are having them ignored by schools and LAs.

    📣 Parent feedback:
    “Clinical Partners took months, got our daughter’s age wrong, and then blamed the questionnaires.”

    🔍 Keep everything in writing. If you’ve been messed around by providers or told you must go private, AskEllie can help you draft formal complaint letters.


    🛑 5. Attendance Pressure is Ramping Up Again

    We’re seeing a sharp rise in School Attendance Orders and threats of fines — even for children with EBSA, anxiety, or unmet needs.

    ⚠️ Some parents are being dragged to court when:

    • Their child has school-based anxiety
    • The LA refuses to assess for an EHCP
    • Or Section 19 has been ignored entirely

    👉 Know your rights. If your child is out of school due to SEND needs, you should not be punished. Use Ellie to get advice tailored to your situation.


    ✅ 6. Parents Are Fighting Back — And Winning

    In all this chaos, there’s hope:

    • More parents are taking councils to tribunal and winning
    • Grassroots groups like Square Peg, Not Fine in School, and others are gaining real momentum
    • MPs and public figures are starting to listen

    Even Baroness Longfield — former Children’s Commissioner — is now actively engaging with parents and supporting tools like AskEllie.


    💬 Final Thoughts

    The system is tough — but you’re not alone. Whether it’s fighting for an EHCP, waiting on assessments, or just trying to survive another school term, there is help out there.

    🛠️ Use AskEllie.co.uk to:

    • Understand your rights
    • Push back against unfair decisions
    • Draft letters in plain English
    • Get clear answers when the system gets overwhelming

    ❤️ We’re here for you. One step at a time.

  • SEND & Summer: When Everyone Else is Planning Days Out and You’re Just Trying to Survive

    For most families, summer holidays mean fun, freedom, and time together. But for many SEND families, summer brings something very different: disruption, anxiety, exhaustion—and survival mode.

    At AskEllie, we’ve heard from hundreds of parents who dread the six-week break. Not because they don’t love their children, but because the lack of routine, support, and specialist provision leaves them stranded.


    Why Summer Can Be So Hard for Our Children

    🔁 Loss of routine – Children who rely on structure can quickly become dysregulated. 🧠 Increased anxiety – New places, loud events, and social pressure can be overwhelming. ⛔ Lack of accessible activities – So many options aren’t inclusive or suitable for children with additional needs. 🛑 Sensory overload – Beaches, theme parks, soft play centres… great for some, unbearable for others.

    And let’s not forget: not every child has friends to see, siblings to play with, or the capacity to join in group activities.


    Why It’s Hard for Parents Too

    😓 No break – The school day may be difficult, but it’s still a few hours of respite. Summer can mean 24/7 care. 💰 Increased costs – Childcare, one-to-one sessions, accessible trips—all add up. 🚫 Judgment – When you cancel plans, avoid events, or need to leave early. 🧱 Service shutdowns – No CAMHS, no social workers, no EHCP progress until September.

    It’s not just the heat that’s suffocating. It’s the sense of being completely alone.


    How You Can Get Through It

    Lower the bar – Not every day needs to be filled with activities. Rest is productive. ✅ Create a loose routine – Even a simple visual schedule can help reduce anxiety. ✅ Prepare in advance – Use social stories, photos, and countdowns for any trips or changes. ✅ Reach out – Some charities run summer support programs. Facebook groups can also be lifelines. ✅ Carve out five minutes for you – A hot drink, a deep breath, a scroll through memes. You matter too.


    And Remember…

    If you’re not doing Insta-worthy days out… that’s okay.
    If your summer looks like TV, snacks, meltdowns, and surviving… that’s still valid.
    If your child is safe, loved, and gets through the day—you’ve done enough.

    Come see us at AskEllie.co.uk for more support, guides, and real talk from families who get it. You’re not alone. Not this summer. Not ever.


  • “But They’re Fine at School…” — What Parents Wish Teachers Knew About Masking

    If you’re the parent of a neurodivergent child, you’ve probably heard it more than once:

    “But they’re fine at school.”

    Except they’re not.

    They’re masking—working overtime to fit in, hold it together, avoid getting in trouble, and seem “normal” enough to get through the day.

    And by the time they get home, they explode, collapse, or retreat into themselves. Because the effort of masking all day is exhausting—and home is the only place they feel safe enough to let go.


    What is Masking?

    Masking is when children suppress their natural behaviours, needs, or responses to fit into their environment. For autistic and PDA children, this can mean:

    • Forcing eye contact
    • Sitting still when their body is screaming to move
    • Copying other kids to hide that they don’t understand
    • Nodding along when they’re actually confused or distressed

    They might come across as quiet, compliant, or even high achieving. But it doesn’t mean they’re coping.


    Signs Your Child Might Be Masking at School

    ✅ Explosive meltdowns after school ✅ Shutdowns—refusing to talk, engage, or move ✅ Extreme exhaustion ✅ School refusal or anxiety around returning ✅ Regression in skills or toileting

    If your child seems “fine” in class but falls apart the moment they leave the school gates—you’re not imagining it. And it’s not your parenting. It’s a response to chronic emotional overload.


    What Can Parents Do?

    • Keep a daily diary of behaviours at home to show the full picture
    • Ask for a home-school communication book to share how things really are
    • Push for EHCP needs assessments that reflect both settings, not just school observations
    • Educate schools on masking—it’s not defiance or attention-seeking, it’s survival

    Remember:

    Just because a child isn’t seen to struggle doesn’t mean they aren’t suffering.

    Let’s stop measuring support by what happens in the classroom—and start listening to what happens at home.

    If you’re struggling to be heard or want help making your child’s needs visible, come by AskEllie.co.uk for support, templates, and guidance built by families who’ve been there.

  • The Hidden Cost of Being a SEND Parent: Why It Shouldn’t Break You—Emotionally or Financially

    Every parent of a child with additional needs knows this truth: it’s not just the system that’s broken—it’s what it costs us to survive it.

    While mainstream conversations focus on EHCPs, assessments, and school placements, what rarely gets talked about is what it costs families behind the scenes: the careers we give up, the therapy we pay for out-of-pocket, the lost friendships, the endless admin, and the constant emotional toll.


    The Unspoken Costs:

    • 💸 Private Assessments: Because NHS waiting lists are years long
    • 💔 Relationship Strain: Because exhaustion replaces connection
    • 🧾 Lost Income: Because someone has to stay home, fight the LA, and pick up the pieces
    • 🧠 Mental Health: Because watching your child be failed again and again is soul-destroying

    Many of us never planned for this. We didn’t budget for being full-time caseworkers, therapists, and advocates. We didn’t know we’d become the experts in a system that treats us like we know nothing.


    What Needs to Change

    Funding must match need – Families shouldn’t have to bankrupt themselves for basics. ✅ Recognition of parent-carers as professionals – Because we’re doing the work of a dozen systems, without pay. ✅ Simplified access to financial support – DLA, Carer’s Allowance, transport grants… the burden shouldn’t be on us to decode it all.


    You’re Not Alone

    If you’ve ever skipped your own dentist appointment to fund an OT session… If you’ve cried in the car park after another school meeting… If you’ve sat up at night writing complaints when you should be sleeping…

    You’re not just “coping.” You’re carrying a broken system on your back.

    And you shouldn’t have to.

    AskEllie exists to take some of that weight off. Free tools. Templates. Step-by-step support. Built by parents, for parents—because you shouldn’t have to do this alone.

    Come see us at AskEllie.co.uk

  • What Happens When We’re Gone?” – Planning for Our SEND Children’s Future

    It’s one of the hardest things to think about as a parent:
    What will happen to my child when I’m no longer here to protect them, fight for them, or support them?

    💔 So many of us are stuck in survival mode—fighting the day-to-day battles with EHCPs, services, and appointments. But for families of autistic or disabled children, planning ahead isn’t just important… it’s essential.

    Here are some things every SEND parent should start thinking about—no matter how young your child is:

    Make a Will – and make sure it includes instructions for guardianship, financial support, and future care.
    Consider setting up a Discretionary Trust – this can allow your child to inherit without it affecting their benefits.
    Talk to a solicitor who understands disability and SEND – they can help protect your child’s long-term rights and support.
    Write down everything – your routines, your child’s needs, what calms them, what triggers them. It can become a lifeline for future carers.
    Talk to family members – let them know what support might be needed, and what plans are in place.

    It’s not easy. It’s not nice. But it’s necessary.
    Because the love and protection you give now should still be there—even when you’re not.

    You don’t have to figure it out alone. We’re building tools and resources at AskEllie.co.uk to support families with exactly this kind of planning—so you don’t have to leave it until it’s too late. 💛

  • What Is PDA? Understanding Pathological Demand Avoidance in 2025

    You may have heard the term PDA thrown around in parenting groups, school meetings, or EHCP reports—but what exactly is it?

    And why is it so misunderstood?

    Let’s break it down.


    What Does PDA Stand For?

    PDA stands for Pathological Demand Avoidance—a profile of autism that involves an extreme, anxiety-driven need to resist everyday demands and expectations.

    It’s not about being defiant or oppositional for the sake of it. It’s about a deep, involuntary response to feeling out of control.

    Children and adults with PDA often:

    • Avoid even simple, everyday requests (getting dressed, brushing teeth)
    • Use social strategies to distract or delay (jokes, negotiation, pretending)
    • Experience explosive meltdowns if pushed
    • Struggle with transitions or direct instructions
    • Appear “fine” at school and explode at home (or vice versa)

    Who First Described PDA?

    PDA was first described in the 1980s by Professor Elizabeth Newson, a UK developmental psychologist. She noticed a group of children who met many criteria for autism but responded differently to structure, authority, and routine.

    These children didn’t just dislike demands—they reacted to them with extreme stress and emotional overload. Traditional autism strategies (like clear routines and firm boundaries) often made things worse.

    Newson believed PDA was a distinct profile within the autism spectrum.


    Is PDA Officially Recognised?

    Here’s where it gets tricky.

    In the UK, PDA is not a standalone diagnosis in official manuals like the DSM-5 or ICD-11. Instead, it may appear in EHCPs or reports as:

    • “Autism with a demand avoidant profile”
    • “Extreme demand avoidance traits”
    • Or simply folded under the broader ASC (Autism Spectrum Condition) label

    The National Autistic Society (NAS) and many clinicians in the UK acknowledge PDA, but acceptance is inconsistent—and support can vary wildly depending on your local authority or school.

    Globally, recognition is even more limited. In the US, Canada, and much of Europe, PDA is not formally recognised, though awareness is growing among professionals and advocacy groups.


    What Causes PDA?

    PDA is believed to be rooted in autistic neurology and extreme anxiety. When demands are placed, it can trigger a “fight, flight, or freeze” response—even for things the child may want to do.

    It’s not about being lazy, stubborn, or spoiled. It’s about the brain going into survival mode.


    What Helps Children with PDA?

    Standard parenting strategies often don’t work for PDA—and can even make things worse. What does work is:

    Low-demand, low-pressure environments
    Collaborative approaches (working with the child, not doing to the child)
    Choice, control, and flexibility
    Using indirect language (e.g., “I wonder if…” instead of “Go and…”)
    Predictable but not rigid routines
    Respecting when the child says “no” and building trust over time


    Why It Matters That We Understand PDA

    Children with PDA are often misunderstood—labelled as “naughty,” “manipulative,” or even “abused” when their needs go unrecognised. Families are blamed. Children are punished. Schools fail them.

    But when PDA is understood and supported, these children can thrive—emotionally, socially, and academically.

    Understanding PDA isn’t about giving in. It’s about meeting the child where they are, and building safety from there.


    Final Thought

    PDA is still catching up in terms of recognition—but parents, advocates, and some professionals are leading the way. Awareness is growing, and with that comes better support, better strategies, and better futures for our children.

    If you’re parenting a child with extreme demand avoidance—or struggling to get professionals to understand your child—come by AskEllie.co.uk.
    We’ve got resources, templates, and support that puts your experience first.

    You’re not alone.

  • Beyond the School Fight: Thinking About Our Children’s Futures

    When your child has SEND, it’s easy to get stuck in the day-to-day battle
    The EHCP.
    The placement.
    The transport.
    The meltdowns before school.
    The exclusions.
    The tribunals.
    The sleepless nights and endless paperwork.

    We become warriors for education, because we have to be.
    But here’s something most of us don’t get the time—or emotional energy—to say out loud:

    What happens after school?
    What does their future look like—with us, or without us?


    We Fight for Support Now—But What About Later?

    Most parents aren’t just thinking about Year 7 or GCSEs.
    We’re quietly asking ourselves things like:

    • Will they be able to live independently?
    • Who will support them if we’re not here?
    • What happens when services fall away at 18 or 25?
    • Will they have friends, relationships, purpose, joy?

    And maybe hardest of all:
    Will they be safe when we’re gone?

    These are not thoughts we get to explore easily.
    Because the system keeps us stuck in short-term fire-fighting mode.


    Thinking Long-Term Doesn’t Mean Giving Up On Now

    It’s not about accepting less for your child today. It’s about preparing for tomorrow.

    💡 It means thinking about skills, not just grades.
    💡 Teaching them how to speak up for themselves—even if that’s through tech, visuals, or a trusted person.
    💡 Building in self-care and coping strategies that will carry them beyond the school system.
    💡 Focusing on relationships and life experience as much as reading levels.
    💡 Thinking about supported living, future carers, or siblings—even if it breaks your heart to plan for it.


    The Future Doesn’t Have to Be Scary—It Just Needs To Be Thought About

    You know your child. You know their strengths, challenges, sensitivities, and spark.
    Nobody is better placed than you to start planting seeds now that will support the person they are becoming.

    Start small. Start honest.

    Talk to professionals about transitions—not just between key stages, but between life stages.
    Ask about life skills pathways, post-18 planning, and supported internships.
    And most importantly—talk to your child. What brings them joy? What feels hard? What do they dream of?


    You’re Not Just Raising a Child—You’re Growing an Adult

    And you’re doing it in a system that makes you fight for every step.
    That’s why the future feels so overwhelming.

    But the fact that you’re even thinking about it—that you’ve asked these questions—means you’re already one step ahead.


    If you need help planning for what comes after school—or just someone who understands why this matters so much—come by AskEllie.co.uk.
    We’re not just here for the battles.
    We’re here for the life you’re building beyond them.

  • Free Autism Courses in the UK: Where to Start When You Want to Learn More

    When your child is diagnosed with autism—or you’re waiting on a diagnosis—it can feel like stepping into a whole new world. Suddenly, there’s a wave of information, advice, acronyms… and overwhelm.

    Many parents ask:
    “Where can I find free, reliable autism training that actually helps me understand and support my child?”

    We hear you. Here are some of the best free autism courses and resources available to UK parents and carers right now.


    1. The Open University – “Understanding Autism”

    📍 OpenLearn: Understanding Autism

    A brilliant 8-week free course written by academics and autistic people. Flexible, evidence-based, and provides a downloadable certificate at the end.


    2. Autism Education Trust (AET)

    📍 www.autismeducationtrust.org.uk

    Offers free downloadable guides and training materials. Some of their courses are delivered locally via schools or councils—so check your local SEND offer.


    3. National Autistic Society (NAS)

    📍 www.autism.org.uk

    The NAS has free webinars, downloadable guides, and advice for every stage of the autism journey. Some in-depth courses may cost a little, but a lot of content is free.


    4. Local NHS and Council-Run Courses

    Look out for:

    • EarlyBird (for parents of under 5s)
    • Cygnet (ages 5–18)
    • Sleep and anxiety workshops
    • Behaviour support and EHCP training

    Check your Local Offer website, SENDIASS, or CAMHS team to access these.


    5. Ambitious About Autism

    📍 www.ambitiousaboutautism.org.uk

    Free resources, webinars, and toolkits for families with autistic children and young people. Topics include navigating education, anxiety, and preparing for adulthood.


    6. Contact Charity – For Families With Disabled Children

    📍 www.contact.org.uk

    Offers free workshops and training on everything from DLA and EHCPs to behaviour and wellbeing. Available online and in-person.


    Why It’s Worth Learning

    Understanding autism helps you support your child—and fight for the help they need. Whether you’re battling for an EHCP, managing meltdowns, or preparing for transition, knowledge gives you confidence and clarity.


    ✨ Bonus Tip: Join SEND Parent Facebook Groups

    Lots of training is shared by word of mouth! Parents are brilliant at flagging upcoming webinars and free sessions. (You’ll also feel less alone.)


    Need More Than Training?

    That’s why we built AskEllie.co.uk.

    Ask Ellie is a free AI-powered assistant trained in UK SEND law. She can help you:

    • Draft emails and complaints
    • Understand EHCP rules
    • Challenge decisions
    • Find answers, fast

    Because learning is just the beginning—sometimes you also need a bit of backup.


    ❤️ You’ve got this.
    📚 You don’t have to pay a fortune to understand autism.
    🤝 And you’re not alone on the journey.

  • Marriage Tips & Working as a Team When Raising a Child with SEN

    When you’re raising a child with Special Educational Needs (SEN), your marriage can either feel like your greatest strength—or something that’s just about surviving.

    The truth is, parenting a neurodivergent child takes more than love—it takes teamwork. And when that team is strong, the whole family feels it. Your child feels it. You feel it. And your relationship doesn’t get lost in the chaos.

    Here are some honest, battle-tested tips for keeping your partnership strong while parenting through the storm.


    1. Your Child Needs You United—Even When You Don’t Agree

    You won’t always be on the same page. One of you might be more emotional, the other more practical. One might want to push the school harder, while the other wants to keep the peace. That’s okay.

    The key is not being perfect—but being united.
    Disagree behind closed doors. Show up for your child as a united front. When children with SEN feel safe, backed up, and emotionally supported by both parents, it does wonders for their regulation and trust in the world.


    2. Divide the Load—and Name It

    SEN parenting is relentless. The emails, the meltdowns, the meetings, the forms, the transitions—it’s easy for one parent to carry the bulk of it while the other feels helpless or disconnected.

    Sit down together. List it all out.
    Ask: What’s burning you out? What can I take off your plate this week?

    It’s not about 50/50—it’s about doing what you can, when you can, for each other. Because when resentment builds, everyone loses.


    3. Protect Time That Isn’t About Parenting

    You need moments where you’re not “Mum” and “Dad” or “SEND advocates.” You’re just you. That might be a 30-minute walk. A takeaway and a film after bedtime. A coffee outside the house. It doesn’t have to be big—but it has to be something.

    Protect your time together like you protect your child’s EHCP.
    Because you matter, too.


    4. Let Each Other Break Down

    There will be days one of you is strong and the other is in pieces. There will be days when both of you feel like you can’t do this anymore. That doesn’t mean you’re failing. It means you’re human.

    Let each other cry. Rant. Go quiet.
    Then remind each other of what you’ve already come through. You’ve got more fight in you than you think.


    5. You’re Modelling Love, Even Through the Hard Bits

    Your child watches how you speak to each other, how you repair after a disagreement, how you advocate and support each other. You’re showing them what love looks like—not just the soft parts, but the resilient parts too.


    Final Thoughts
    Raising a child with additional needs puts stress on even the strongest relationship. But it can also bring out depths of love, empathy, and teamwork you never knew you had.

    You’re not just surviving—you’re showing your child what safety and partnership look like.

    If you’re ever feeling stuck, burnt out, or alone in the fight, come by and see us at AskEllie.co.uk. We see you. We’re with you.