When you become a parent, people talk endlessly about The Moment. That instant rush of love. The overwhelming connection. The magical feeling when your baby is placed on your chest and suddenly everything changes. But what happens when that moment doesn’t come? Or worse; what happens when you’re never really given the chance? I spotted in a Facebook group for parents of children with complex medical needs, a mum shared how guilty she felt because she hadn’t bonded with her newborn yet. And honestly I wanted to reach through the screen and hug her, because I know that feeling far too well. The truth is, bonding difficulties are already incredibly common amongst parents of typically developing babies. Exhaustion, hormones, traumatic births, anxiety, postnatal depression, all of these things can delay attachment. Love doesn’t always arrive in a cinematic rush. Sometimes it grows slowly and quietly. But when your child is born with complications, bonding can become tangled up in trauma. And nobody really warns you about that part. Instead of skin-to-skin, you might get wires and monitors. Instead of taking your baby home, you get hospital wristbands and fold-out chairs that double as the world's most uncomfortable bed. Instead of learning your baby’s cries, you learn the sound of alarms going off at 3am. There are parents, like me, who spend the first weeks of their baby’s life asking for permission to hold them. Parents who watch nurses change nappies, give feeds through tubes, administer medication, and soothe their child while they stand nearby feeling completely helpless. Parents who don’t get to be “mum” or “dad” in the way they expected yet, because survival takes priority over bonding. And the guilt that comes with that is crushing. I remember feeling like everybody else had been handed a map to parenthood that I somehow missed out on. Other people seemed to float into newborn life while we were learning medical terminology we couldn’t even pronounce properly. There is nothing quite like sitting beside a hospital cot thinking, I love this child with everything in me, so why do I feel so disconnected at the same time? The answer is trauma. Your brain is trying to survive. Because alongside becoming a parent, many of us are also entering a grief process. And that sentence can make people uncomfortable, but it’s important to say out loud. You are not grieving your child. You are grieving the life you thought the two of you would have. The ordinary moments you imagined. The ease. The expectations. The version of parenthood you built in your head during pregnancy. And grief is complicated when your child is right there in front of you needing you to fight for them. One of the most powerful things our hospital psychologist shared with us was the piece Welcome to Holland by Emily Perl Kingsley. It has become something many parents of disabled children hold onto tightly because it explains this feeling better than almost anything else ever has, please read it! But essentially Emily says: “When you’re going to have a baby, it’s like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Colosseum. The Michelangelo David. The gondolas in Venice…” But then: There’s been a change in the flight plan. You've landed in Holland and there you must stay. Emily doesn’t say Holland is bad. She just says it’s different. Different to what you prepared for. Different to what you expected. Different to what everybody else seems to be experiencing around you. And sometimes accepting that difference takes time. Longer than people think. Longer than social media tells you it should. Longer than the “you’re so strong” comments allow space for. If you are in this stage right now, sitting beside your child and wondering why bonding hasn’t happened yet, please hear this clearly: You are not failing. You are not cold. You are not a bad parent. You are traumatised, exhausted, frightened, grieving, and trying to rebuild an entirely new version of parenthood whilst functioning on no sleep and pure adrenaline. Bonding doesn’t always happen in a single moment. Sometimes it happens drip by drip. In tiny victories. In learning your child’s cues. In advocating at appointments. In the first smile. The first time they relax against you. The first time you realise you know exactly what they need before anybody else does. Sometimes love arrives loudly. Sometimes it arrives quietly after survival mode finally loosens its grip. And if I can give one piece of advice to parents entering this world, it’s this: Get therapy. Not because you’re broken or because you’re coping badly. But because this experience is enormous, and most people around you will never fully understand its weight. There is trauma in watching your child suffer. There is trauma in living inside hospitals and the relentless uncertainty. And there is also healing in finally saying out loud, “This is hard.” Because it is hard. Beautiful too, sometimes overwhelmingly so. But hard. You can adore your child and still mourn the ease you lost. You can feel grateful they survived and still feel devastated by what happened. Those feelings can exist together. And over time, what once felt unfamiliar slowly becomes home. Not Italy. But Holland.

Elias lies in a hospital bed, in the background his mum has set up her work laptop on the hospital table There's a particular kind of hospital stay nobody warns you about. Not the dramatic one with a surgery date and a consultant explaining risks by your childs bedside before the whisk them away. The other kind. The "we're just going to watch him for a bit" kind of one. The one where someone else has to pack a bag for you, not knowing if you'll need it for one night or four, and you don't get a neat answer at the end, just a slightly more confident shrug. That was our weekend. Elias started headbanging, hard, the kind that makes your stomach drop because you can't ask him "does it hurt" and get anything back. So we did what you do: we went in to A&E. And then we waited. They scanned him, they prodded him, they watched him on a monitor that beeped in a rhythm I now know better than my favourite songs. Doctors came and went with kind faces and no real news, because there wasn't any to give yet. Just more watching. If you've never sat through one of these admissions, here's what nobody tells you: the not knowing is its own kind of exhausting. Surgery has a shape. You can mentally prepare for "before" and "after." Monitoring has no shape. It's just hours, stacked on top of each other, in a room that smells faintly of hand sanitiser, while you try to read your child's face for clues the machines aren't picking up. And here's the bit that felt like the biggest non-event of the whole stay, and also somehow the most honest thing I can tell you: we left without an answer. He's not in pain, as far as they can tell. That's it. That's the discharge summary. No tidy diagnosis, no "ah, here's what it was." Just a tired, relieved, slightly anticlimactic "go home." I used to think that not getting an answer meant the admission had failed somehow. Like we'd put him through scans and prods and sleepless nights for nothing. I don't think that anymore. Ruling things out is still information. Pain being off the table, even without knowing what's on the table, matters. The photo at the top of this post is my desk setup wedged in beside his bed, laptop balanced on that little fold-out table by the window, because I had to keep working during this hospital stay. Not because I'm some unbothered parent multitasking through a crisis. It's because at hour fourteen of watching someone sleep and listening for changes in their breathing, your brain needs somewhere else to go for twenty minutes. A spreadsheet. An email. Anything that isn't the beep. You're allowed that. Sitting next to your child while they're monitored isn't a passive job, even though from the outside it might look like you're just sitting there. You're holding vigil and also holding yourself together, and sometimes the way you do that is by opening a laptop and pretending, briefly, that you have a normal Tuesday. We came home with no diagnosis and a small mercy: he's not hurting. For now, in the world of complex parenting, that counts as a win. I'm taking it.

Elias kneels on the floor, casually side-eyeing the offending yellow balloon to his left that will later become his downfall There are certain parenting milestones you picture in your head long before they happen. First steps. First words. First tooth. And then there are the milestones you absolutely do not picture. Like your child launching himself face-first into a wooden floor via an exploding birthday balloon and losing a tooth in the least magical way imaginable. Yet here we are. Because of Elias’ developmental delay, even getting his first teeth felt delayed compared to other children. He didn’t get his first tooth until he was around 14 months old. We’d also been told not to expect him to start losing teeth until closer to seven years old. So naturally, at the age where other children are still proudly showing off fully intact toddler smiles, Elias decided to speedrun the experience. It started over the bank holiday weekend during celebrations for his younger brother’s birthday. The house was full of balloons, sugar, noise, and chaos. Elias with his face pressed into the balloon Elias loves balloons. Obsessed with them. Holding them, bouncing them, lying on them. All standard Elias behaviour. So when he started playing on one, none of us thought twice about it. Until it exploded. If you’ve ever seen a child completely lose all sense of gravity and bodily control in one split second, you’ll understand the kind of panic that follows. One moment he was happily playing, the next he had gone down face-first onto our wooden floor with an almighty thud. There were immediate cuddles, immediate tears, immediate guilt. Standard parenting procedure. At first, I thought we’d escaped with just a nasty bump. It wasn’t until a few moments later that I looked down and realised my entire top was covered in blood. And then I saw one of his front teeth had been pushed back up into the gum. That was the exact moment my brain exited the chat. While my partner attempted to calmly talk me down from what can only be described as a full internal medical catastrophe spiral, I sat on the phone to 111 trying to explain what had happened through sheer panic. Then came the part every parent of a child with additional needs knows all too well: repeating your child’s entire medical history over and over again to different professionals. Two emergency dentist trips followed. Every appointment started the same way: “Yes, he’s developmentally delayed.” “Yes, he’s deaf.” “Yes, he has additional needs.” “Yes, communication can be difficult.” “No, he won’t tolerate that.” By the time we finally got through the bank holiday weekend and into our wonderful local community dental team for children with additional needs, I felt like I’d completed some kind of emotionally exhausting NHS side quest. And then, two days later, we woke up and the tooth was simply… gone. Not loose. Not hanging on dramatically. Gone. Vanished into thin air. Or more realistically, into Elias. Now, many people kindly suggested I could “check” for it. I want to make it very clear that there is not a maternal instinct on this earth strong enough to make me root through toddler poo searching for a tiny blood-covered tooth like some sort of deranged archaeologist. So unless that tooth plans on reappearing with its own witness statement, we are officially considering it lost forever. There was no tiny tooth fairy letter. No magical coin under the pillow. Honestly, I’m not even sure Elias would understand why a mystical nighttime burglar was exchanging body parts for money anyway. Elias smiles at the camera, a noticeable gap where his two front teeth would be. Instead, there were just a lot of cuddles, a traumatised mother, and a very gummy little smile where his front tooth used to be. And perhaps that’s the thing about parenting children with complex needs. Even the milestones don’t happen the way you expect them to. The stories are messier. The emotions are bigger. The plans are irrelevant. Sometimes your child loses their first tooth not in a sweet primary school photo moment, but because a birthday balloon betrayed your entire family (every balloon was round up and burst immediately after the incident in retribution). And sometimes you discover that in a crisis, one parent becomes the calm, reassuring voice of reason… while the other one is mentally drafting NHS complaint forms, Googling “can toddlers survive without teeth”, and trying not to pass out into a puddle of their own anxiety. For the record, I was the second parent. Absolutely useless.

It's that time of year again. Calendars have been cleared. Snack boxes prepared. A carefully colour-coded diary of appointment times has been consulted. We are, once again, entering what I can only describe as the Quarterly Business Review season of parenting a child with additional needs. That two-week window where every single specialist, consultant, and therapist on the planet simultaneously decides it is time to Check In On The Asset. Audiologist. Physiotherapist. Paediatrician. Ophthalmology. EHCP review. The occasional wildcard, like someone ringing to ask if we've "noticed any changes" since last time, which, yes, actually, a few, but I've only got fifteen minutes in a car park to tell you about them. It is, frankly, indistinguishable from a board meeting. There's an agenda. There are action points. Someone asks if the previous action points were completed and the honest answer is: some of them, yes; others, no, because life happened and also I forgot to order that specific piece of equipment for six weeks because it required a form I didn't know existed. I might start going in with slides. (I haven't actually made slides. But I feel like I should have slides). The format is remarkably consistent across departments. We open with a recap of last quarter's performance, which is a polite way of saying: has he grown, has he regressed, has he done anything unexpected that we should log. There's a round of applause for the wins, which in our case tends to sound like me saying "he's doing really well actually" in a voice that is approximately 40% bravado. Then we move into challenges, risks to monitor, and a forward-looking plan. Someone writes something in a system I will never have access to. We shake hands and agree to reconvene in three to six months. And then we do it all again. Every quarter. Like clockwork. The funniest part, if you can call it funny (which I'm choosing to), is that none of these appointments talk to each other. They are separate companies with competing interests who have all decided to hold their AGM in the same fortnight. The audiologist does not know what the physio said. The physio does not know what the paediatrician said. I am, in every meaningful sense, the executive assistant who has read all the briefing documents and is sitting in the middle of the org chart, trying to ensure everyone is aligned on the key deliverables. The key deliverable being, of course, my son. Elias, for his part, is completely unbothered by any of this. He treats each appointment with the energy of someone who has just been pulled into yet another meeting that could have been an email. He tolerates the observations, endures the measurements, and then immediately gets on with his actual priorities, which are giggling uncontrollably at some small thing and conducting a thorough investigation into what happens when you roll a ball under the sofa repeatedly. I respect that. Keep your eyes on what matters. What I've learned, after years of these reviews, is that there's actually something quietly reassuring about them too, even when they pile up and the diary looks like a corporate hellscape. Because underneath all the forms and the waiting rooms and the "so, what are your concerns at this stage?", what's actually happening is a room full of people who are, in their own clinical, professional, slightly-too-much-jargon way, invested in how Elias is doing. That's not nothing. That's actually quite a lot. So yes. QBR is upon us. The meetings have been scheduled. The questions have been prepared. The snacks for the waiting room have been sourced. Let's run through the numbers.

Let me paint you a picture. It's a Saturday morning. We're in Morrisons. Elias is doing his Thing — the hum. The beautiful, resonant, full-body hum that he produces when he's happy, which sounds somewhere between a didgeridoo warming up and a small engine failing. He is ecstatic . He is also, periodically, smacking himself cheerfully on the side of the head, because apparently that's where the good sensory feedback lives, and honestly, fair enough. And I, his devoted, exhausted, deeply caffeinated mother, am doing my  Thing. Scanning. Always scanning. I am basically a human perimeter defence system at this point. Eyes flicking left, right, ahead. Clocking every raised eyebrow, every micro-expression, every person who glances our way for a millisecond longer than feels comfortable. My jaw is set. My shoulders are up somewhere near my ears. I have the energy of someone who has already rehearsed seventeen different responses to seventeen different comments that haven't happened yet and probably won't. I am ready . I am vigilant . I am a lioness, and Elias is my cub. Suddenly, the man by the milk catches my eye. He looks at Elias. He looks at the joyful, rhythmic head-slapping. He looks back at me. And he smiles . Not a pitying smile. Not a "bless you, you poor thing" smile. Just a smile. Like he's seen a small boy enjoying himself enormously and found it delightful. Which, to be fair, it is. Elias is excellent  at enjoying himself. And I, warrior mother, defender of my child, ready for anything, am completely, utterly thrown. I probably blinked at him like a startled owl. I may have done an awkward half-nod. I definitely moved away faster than necessary, because kindness I wasn't braced for is somehow harder to receive than the hostility I'd already mentally pre-fought. This is the absurdity of it, isn't it? We prepare so hard for the worst that we sometimes can't even receive  the best. When you have a child with additional needs, you develop what I like to think of as Protective Parent Syndrome. A condition characterised by a permanent low-level threat assessment, a hair-trigger for perceived judgement, and an absolutely exhausting  internal monologue that runs on a loop every time you leave the house. That woman looked over. Why did she look over? Is she going to say something? What will I say if she says something? But what if she's not even thinking what I think she's thinking? What if she's just wondering if we have the same coat? (Spoiler: she was wondering about the coat). The mental load of it is staggering. We are simultaneously trying to support our children, read the room, manage sensory environments, anticipate needs, and fight an imaginary army of disapproving strangers who, more often than not, simply do not exist. We are exhausted by a war that mostly isn't happening. And the thing is, and I want to say this gently because I know how hard-won this realisation is, most people are fine. Actually fine. Not performing fine. Not biting their tongue fine. Just fine. They see Elias humming with the frequency of a tuning fork and they think: oh, happy kid.  They see him doing his little percussive head thing and they think: children are wonderfully weird, aren't they.  They see the two of us navigating the world on our own particular terms and they think, (if they think anything at all): good for them. Some of them, the ones who know, give you The Nod. Fellow parents of kids with additional needs, you know the one. It says: I see you. I've been in that Morrisons. I've scanned those faces. You're doing brilliantly.  It contains multitudes. It has kept me going on days when very little else has. And some of them are just genuinely happy to see a little boy living his best life. Because children experiencing pure joy are, objectively, one of the nicest things in the world to witness, even when that joy is expressed via unconventional sound effects. So here's what I'm working on. Notice I said working on , not cracked , because let's be honest. 1. Notice the armour going on. The moment the shoulders creep up and the jaw sets and the scanning starts, notice it. You don't have to immediately put it all down, but just noticing creates a tiny bit of space between you and the threat response. You are not in danger. You are in a soft play café with slightly sticky tables. 2. Let good things land. When someone smiles, let the smile actually arrive. Don't immediately explain it away or brace against it. Someone was kind. You can receive that. You're allowed. 3. Remind yourself what you're actually protecting. You want to protect your child from judgement and unkindness. Completely valid. But you're also, inadvertently, protecting yourself from experiencing the good stuff: the solidarity, the sweetness, the strangers who genuinely just think your kid is great. Don't armour yourself against that too. 4. Save the energy. Because here's the uncomfortable truth: the armour is heavy . Carrying it everywhere means you arrive at every outing already half-depleted, which makes the actual hard moments, the ones that occasionally, really do happen, harder to navigate with grace. Pick your battles. Don't pre-fight the ones that exist only in your head. 5. Live in his moment, not yours. Elias is not worried about the man in the milk aisle. Elias is humming. Elias is radiant . While I am running threat assessments, he is simply being alive in the most committed, whole-hearted way possible. Sometimes the most useful thing I can do is put down the perimeter defence and just be there with him, in the hum, in the joy, in the Morrison on a Saturday morning. That's where the good stuff is. The world is not always kind. I know that. There will be days, and there have been days, when someone does say something, when the look is  what you feared it was, when you need every bit of that fierce protective love to show up and handle it. But it happens less than we expect. And in the meantime, we are spending an enormous amount of our finite, precious energy guarding against shadows. Elias is happy. Elias is loud  about being happy, in the best possible way. And somewhere in the milk aisle, a stranger thought that was worth smiling at. I'm trying to let that be enough. I'm trying to put the armour down, just a little, and smile back.

There is a deceptively simple question at the heart of the government's long-awaited SEND reform. It is the question every parent of a child with special educational needs has been asking for months, and the one Education Secretary Bridget Phillipson was still conspicuously failing to answer on Laura Kuenssberg's BBC programme just hours before the Schools White Paper landed. Will my child lose support? Today (Feb 23), we finally got the White Paper itself. And while the government is hoping that a £4 billion headline figure will drown out the harder questions, families looking for a clear commitment (for an honest, unambiguous answer) will search the document in vain. The semantic sleight of hand continues. The assurance that "effective support" will not be taken away is not the same as an absolute guarantee that no child will lose an element of present provision. That distinction matters enormously, and the government knows it. What the White Paper Actually Says Titled Every Child Achieving and Thriving , the White Paper does at least put flesh on the bones of what had been circulating in leaks since Thursday. Here is what we now know: Children in Year 3 or above currently will keep their EHCP until at least age 16, and those in Year 2 or below will be reassessed when they transition to Year 7. The new system will not come into force until at least September 2030, following a 12-week public consultation and a rollout beginning in September 2029. No child with a special school place when the reforms start being introduced in 2029 will lose it. These protections sound reassuring... until you read the small print. Around one in eight children and young people who currently have an EHCP will move to new support plans between 2030 and 2035 when their needs are reviewed. The DfE projects the proportion of pupils with an EHCP will drop from 5.8% today to around 4.7% by 2034/35. That is not a bureaucratic rounding error. That is tens of thousands of children. At the centre of the new architecture is a plan called an Individual Support Plan (ISP), which will sit below the EHCP tier. The reforms are expected to introduce a plan with legal footing for all children with SEND called Individual Support Plans (ISPs), and it is understood they will apply to children who have been assessed as needing specialist support. The ISPs will have multiple tiers ("targeted" and "targeted plus") and children will not need a diagnosis to access them, which the government presents as progress. Challenges to ISPs will be through normal schools and local council complaints procedures. Yes. Read that again. The legal route to challenge a decision about your child's support, which is currently through an independent tribunal, will (for ISP holders) be replaced with a complaints process run by the very bodies that made the decision in the first place. SEND parents will recognise this model immediately. It is the model that failed them before. The Money: Big Numbers, Hard Questions The government has led with the £4 billion investment figure and is hoping it does the heavy lifting politically. The breakdown is as follows: a new Inclusive Mainstream Fund worth £1.6 billion over three years, provided directly to early years, schools and colleges; and £1.8 billion over the same period to create an "Experts at Hand" service, a bank of specialists (SEND teachers, speech and language therapists etc.) available in every local area, accessible regardless of whether a child has an EHCP. A further £200 million will go to teacher training, and another £200 million to help local authorities manage the transition. £1.6 billion is a big number on paper. But as Special Needs Jungle's analysis points out, money alone cannot change an organisation's culture. And the previous implementation grant given to local authorities from 2014 to 2018, to implement the last round of SEND reforms, largely went to consultants and achieved minimal lasting impact. The government should explain precisely how it will ensure this time is different. NASUWT general secretary Matt Wrack was characteristically blunt, saying the idea that SEND provision could be adequately overhauled with "this low level of funding" was "ridiculous." Meanwhile, local government SEND deficits are projected to reach £6 billion by March 2026; a structural hole that the new money does not come close to filling. The Art of Not Answering (Continued) Before the White Paper was published, Phillipson sat down with Kuenssberg and was asked directly: will any child who currently has an EHCP lose their support? She could not bring herself to say no. "We will strengthen and put in place better support for children," she said. The government would "spend more money, not less." The reforms would "transform support for children and families." Journalistic scrutiny highlighted a key semantic fault line: the assurance that "effective support" will not be taken away is not the same as an absolute guarantee that no child will lose an element of present provision. And now that the White Paper is public, we can confirm that the semantic caution was warranted. The government has not given that guarantee. It cannot, because the document itself projects that a significant minority of current EHCP holders will transition to new, less legally robust plans. Phillipson said in the paper that the plans will take children with SEND "from sidelined and excluded to seen, heard and included." Fine words. But when Marsha Martin, who runs Black SEN Mamas (a support network for Black mothers of SEND children) spoke to ITV News, her concern was blunter: "It almost seems as though what they are putting in place might stand to exacerbate the issues that we currently have. All we have actually asked for is that there is better adherence to the laws by local authority and that local authorities are held to account." What Parents and Campaigners Fear — And Why the White Paper Doesn't Resolve It The Autistic Girls Network's CEO, Cathy Wassell, was among those who reacted to the White Paper's direction with alarm. She described the announcements as "a betrayal of the very principle of inclusion," adding: "Autistic girls often spend primary school masking their struggles. They only get identified when they hit the 'secondary crash.' Slashing support now is like removing a life jacket just as the child is pulled into the deep end." Her point about secondary transition is particularly relevant given what the White Paper confirms: those who do have an existing EHCP will have to have their needs reassessed between each different phase of their education. Yet we already know that in 2025, only 46.4% of new EHCPs were issued within the statutory 20 weeks. Forcing children back through an assessment system that already takes twice as long as the law requires, at precisely the most turbulent and vulnerable moments of their education, is not a reform. It is an additional hurdle. The campaign group Save Our Children's Rights called the reforms "an absolute disaster," warning that limiting access to EHCPs could leave "some children and young people with no legally enforceable right to an accessible education that meets their needs." James Watson-O'Neill, chief executive of Sense , welcomed the funding but warned: "A shocking number of children are being failed by a baffling and underfunded SEND system. Too many are falling through the cracks — at the cost of their happiness, wellbeing and future life chances. If their children's legal rights are weakened any further or there's an attempt to cut spending, the consequences could be devastating." Teaching unions also pushed back. Teachers' voices have been "conspicuously absent" from the decision-making, according to unions, who also question whether mainstream schools that are already overstretched, have the capacity or culture to become genuinely inclusive overnight, however much money is promised. There is also a social justice dimension that deserves more attention than it has received. Worries persist that parents with higher incomes and the capacity to navigate a complex system are more likely to secure support for their children. A tiered system with school-managed ISPs and a complaints-based challenge mechanism (rather than an independent tribunal) will be much easier to navigate for those with resources, time, and confidence. The families who fought hardest to get EHCPs are disproportionately those who can afford to. The families who will lose most from a weaker system are disproportionately those who cannot. A System in Crisis — But the Wrong Solution? None of this is to pretend the status quo is acceptable. The system is broken, and has been for years. More than £10 billion a year is spent in England, but children with SEND are still under-achieving, disengaged from education and disproportionately excluded from mainstream schools. Councils are projected to hold £6 billion in high needs deficits. Families are pulling their children out of school at record rates, some 150,000 children were educated at home in England during the last academic year, up from 92,000 in 2023. The case for genuine, ambitious reform of SEND is overwhelming. Nobody serious disputes that. But as education law specialists have pointed out, the whole reason for the growth of EHCPs is simply because they have been "necessary", mainstream schools cannot deliver the support many pupils need within existing resources. That is not a legal issue, but a factual one. Redesigning the legal framework does not change that underlying reality. It simply changes who is legally responsible for acknowledging it. The Question That Remains The White Paper is now public. The big numbers are out. The architecture of the new system is now on the record; EHCPs for the most complex needs, ISPs for everyone else, a transition beginning in 2029. And yet the central question that parents have been asking remains unresolved. Will my child lose their support? For a child in Year 2 with an EHCP today, the honest answer is: we don't know. They will be reassessed at Year 7. That assessment will be made under new criteria, by a system that is already failing to hit its own statutory deadlines, using a complaints mechanism rather than an independent tribunal if families disagree with the outcome. The government's answer is that the £4 billion will transform mainstream schools, making them so genuinely inclusive that fewer children will need statutory plans. That is possible. It is also, frankly, optimistic to the point of wishful thinking, given that a similar ambition underpinned the 2014 reforms — and we know how that turned out. Bridget Phillipson has said this is a "watershed moment." Perhaps. But watersheds can flow in either direction. And for the families who have already fought (and too often lost) in the current system, the promise of a better one in 2030 will need rather more than warm words and big headline figures to be convincing. The question she still can't answer tells you everything about why those families are right to be worried. If you are a parent or carer affected by SEND reform, you can find information, support and guidance on the new proposals at IPSEA (Independent Provider of Special Education Advice) at ipsea.org.uk. You can also contact your MP directly to share your family's experience, and respond to the 12-week public consultation on the new system when it opens.

When I first noticed Elias making his way from our cosy family living room gatherings to hang out alone in the kitchen, I'll admit I had a bit of a wobble. There we'd all be, gathered together (me probably overthinking our BSL storytelling technique), and off he'd go, determined as a miniature explorer setting off for uncharted territory. Except his Everest was the kitchen floor, and his motivation was... well, I had no idea. Cue the parental guilt spiral I'd perfected over the years. Was he upset with us? Did he feel left out? Had I done something wrong? Should I encourage him back? Was this "a sign"? (That phrase that haunts every parent of a complex needs child at 3am.) I spent ages hovering awkwardly between the living room and kitchen, trying to strike that impossible balance between respecting his space and making sure he knew he was welcome with us. I'd pop my head round the corner like some sort of anxious meerkat, trying to catch his eye. He'd glance at me with an expression that clearly said, "I was fine until you showed up," and I'd retreat, slightly wounded. Then one day, someone on his team said something that should have been obvious but felt revolutionary: "Elias is processing so much just to navigate his world; visual information, physical positioning, spatial awareness. Being around people requires even more energy. He might just need to recharge his batteries." Recharge his batteries. Of course. I thought about all the times I've desperately needed to escape to a quiet room after a long day, or how I'd rather have a root canal than attend a networking event. And Elias? He's constantly taking in visual information, managing his body in space, communicating in a language most of the world doesn't speak, and navigating a physical environment that wasn't designed for him. Why had I assumed he wouldn't need downtime even more than I did? The kitchen wasn't a rejection. It was his sanctuary. His quiet space. His "please leave me alone for ten minutes while I decompress from the utterly overwhelming experience of being a small human in a world that requires so much of me." What the Experts Say It turns out this is incredibly common among children with complex needs, particularly those who are deaf, have mobility differences, or have multiple support needs. The National Deaf Children's Society emphasises that deaf children often experience something called "concentration fatigue". The mental exhaustion that comes from constantly concentrating to gather visual information, lipread, or use BSL. They need breaks from visual processing just like hearing children might need breaks from noisy environments. Contact (the charity for families with disabled children) emphasises that every child's needs are different, and learning to recognise what your child needs, even when it looks different from what you expected, is one of the most important skills you can develop as a parent. They've got some brilliant resources on their website about supporting children's emotional regulation and sensory needs. The Council for Disabled Children also highlights that respecting a child's need for space and autonomy, even when it feels counterintuitive, builds trust and helps them develop self-awareness about their own needs. That's actually a life skill we're nurturing, not a problem to fix. These days, I've learned to read the signs. When Elias makes his way to the kitchen, I let him go. I check he's safe (our kitchen is now basically Fort Knox), and then I leave him to it. Sometimes he's there for five minutes, sometimes twenty. Sometimes takes a toy. Sometimes he just sits and watches the light patterns on the floor. And that's absolutely fine. I've stopped taking it personally. Well, mostly. I'm still working on not feeling a tiny bit rejected when he leaves mid-storytime, but I'm getting there. We're now in the process of making the kitchen more "his" space. Independent access to toys, comfy surfaces and clear sightlines so he can see if someone's entering the room (because surprising a deaf child is never fun for anyone). Here's the thing I didn't expect: watching Elias advocate for his own needs, in his own way, fills me with pride. He knows what he needs, and he goes to get it. That's actually remarkable. How many adults do you know who can do that? And on the days when he does choose to stay with us in the living room for longer? Those moments feel even more special because I know he's choosing to be there, not staying because he thinks he has to. Plus, I've learned to be more intentional about how I engage with him. When I do go into the kitchen, I make sure I'm in his line of sight, I check if he wants company (his body language is pretty clear these days), and I respect his answer either way. For Other Parents on This Journey If you're watching your child make their way to their own preferred spot and feeling that familiar pang of worry or rejection, here's what I wish someone had told me earlier: It's not about you. I know, I know; everything feels like it's about us and our parenting. But sometimes a kitchen is just a kitchen, and your child needing space is just them being a person with needs. Trust them. They're communicating something important, even if it's not in the way you expected. Listen to what they're showing you. Make it safe and accessible. If they've chosen a space, help make it somewhere they can safely and independently be. For us, that meant thinking about sightlines, floor surfaces, accessible storage, and removing anything hazardous at his level. Get support. Contact's helpline (0808 808 3555) has been a lifeline for me on the tough days. They get it. The National Deaf Children's Society also has brilliant support for families. And your local Family Information Service can point you toward support groups and services in your area. Give yourself grace. It takes time to understand your child's needs, especially when they differ from what you expected or what the parenting books say. You're doing brilliantly. These days, I sometimes join Elias in the kitchen, sitting quietly at the other end, doing my own thing. No pressure, no expectation, just two people existing in the same space. Sometimes he makes his way over and settles next to me. Sometimes he doesn't. Both are lovely. And you know what? I've discovered that I quite like the peace of the kitchen too. Turns out we're more alike than I thought. So here's to all our kitchen explorers, bedroom dwellers, and garden gazers. Here's to the children teaching us that connection doesn't always mean proximity, and that love means respecting needs even when they're different from ours. And here's to us parents, slowly learning that sometimes the best thing we can do is simply let them be. Now if you'll excuse me, I need to go check why the kitchen is suspiciously quiet. (Spoiler: he's fine. He's always fine. But I'm still a parent, so I'll check anyway.) Got a kitchen explorer of your own? Or a bathroom dweller? Or a hallway inhabitant? Share your stories in the comments, we'd love to hear them.

Of all the milestones you imagine when you become a parent, celebrating your birthday in a hospital room is rarely one of them. As I head into my birthday this weekend, I’ve been thinking a lot about my first birthday as a parent – and how deeply it reshaped my understanding of just how important hospital staff are, not just to our children’s outcomes, but to our emotional survival too. Elias had only just been discharged from hospital after his birth and brought home when he caught COVID. That fragile, tentative sense of relief we’d been clinging to disappeared almost overnight. Instead of settling into life at home, I found myself spending New Year’s Eve isolated in a single room at our local hospital. No visitors. No family. No popping out for air or comfort. Just the hum of machines, the soft glow of hospital lights, and the strange quiet that comes when the rest of the world is celebrating without you. When the COVID passed, things didn’t get easier. Elias was transferred back to Great Ormond Street Hospital so his nasal passage could be re-dilated and his nasal stents reinserted. A necessary procedure – but one that landed us spending a night in ICU afterwards. If you’ve ever been in ICU with your child, you’ll know there’s a particular kind of fear that settles in your chest and refuses to leave. Rational thought exists, but it’s drowned out by instinct and exhaustion. All the while, my birthday was looming. I’d been agonising over whether to celebrate it at all. Friends had plans. Messages were waiting to be answered. I felt guilty for even considering cancelling – and guilty for considering going ahead. In the end, I cancelled. And thank goodness I did, because I spent my birthday in hospital, sitting beside my child’s bed. It was shaping up to be one of the hardest days of an already brutal period. And then the nurses did something extraordinary in its simplicity. The nurses looking after Elias bought me a card and a cake. A real cake. With candles (although we weren't allowed to light them). They came into the room and sang happy birthday. I cried immediately – the kind of crying that surprises you with its force because it’s been waiting just under the surface. It didn’t change our situation. Elias was still in ICU. We were still scared. I was still a mother watching monitors instead of opening presents. But in that moment, I felt seen. Not just as “Elias’s mum” or “the parent in bed space X”, but as a person. A woman having a birthday on one of the hardest days of her life. That’s the thing about hospital staff that often goes unsaid: their impact stretches far beyond clinical care. Yes, their expertise saves lives. Yes, their vigilance catches things before they become catastrophic. But their humanity – their kindness, humour, and small acts of thoughtfulness – can hold families together when everything feels like it’s falling apart. When you’re in hospital long-term, or repeatedly, the lines between days blur. Time stops meaning what it used to. Celebrations, routines, and normal markers of life fade into the background. Hospital staff are often the ones who gently remind you that life is still happening, even here. Especially here. For parents of children with complex needs, hospitals become a second home. Staff become familiar faces. They learn your child’s quirks, your coping mechanisms, the look on your face that means you’re about to crumble. They notice when you haven’t eaten. They remember siblings’ names. They ask how you are – and sometimes, they wait long enough for a real answer. That birthday cake wasn’t part of a care plan. It wasn’t in anyone’s job description. But it changed the tone of that day completely. It gave me something warm to hold onto in a memory that could easily have been dominated by fear and sadness. As I celebrate another birthday now – thankfully not in a hospital – I carry that moment with me. A reminder that in the darkest chapters of our stories, there are people who step in and quietly add light. People who show up day after day, often under immense pressure, and still find the capacity to care for the whole family, not just the patient. So this is a thank you. To the nurses who sing happy birthday. To the doctors who explain things one more time without impatience. To the healthcare assistants who notice when you’re shaking. To all hospital staff who understand that sometimes, what families need most isn’t another update – it’s a small act of kindness that says, I see you. Those moments matter more than you’ll ever know.

Love, Laundry and Low Battery Before we had Elias, my partner and I argued about normal things. You know; whose turn it was to do the bins, why someone always forgot the milk, and whether one episode of Netflix ever really means one episode. After Elias came into the world? The arguments levelled up. Suddenly we were debating medical decisions, therapy schedules, sleep deprivation as a lifestyle choice, and why one of us seemed to be coping far too well while the other was hanging on by a thread and a cold cup of tea. If this sounds familiar, you’re not alone. Raising a child with additional or complex needs doesn’t break relationships because love disappears; it strains them because the job is relentless. So… do relationships really fall apart after diagnosis? You’ve probably heard the scary statistic that claims 80% of couples with a disabled child split up. It gets shared a lot, usually late at night when you’re already questioning your life choices. Here’s the truth: That figure is widely debunked and not backed by strong research. What is supported by evidence is this: Around one in three parents of a child with a learning disability describe their relationship as being in distress; higher than parents of non-disabled children. Over half of parents say caring responsibilities cause major strain on family life. Financial stress, exhaustion, isolation and mental health challenges show up again and again in studies. What the research doesn’t say is that separation is inevitable, or that couples who do split have failed. Many stay together. Some grow closer. Some part ways. All of those outcomes can coexist without judgement. But why is it so hard (even when you love each other deeply)? No one really prepares you for how your child's disability seeps into everything, including the bits of your relationship that used to feel easy. 1. You’re tired. Like… deeply tired. Not “had a late night” tired. More “I can’t remember the last time I finished a sentence” tired. When you’re permanently running on empty, patience evaporates. Romance doesn’t stand a chance against sleep deprivation and the seventh appointment reminder of the week. 2. You stop being a couple and start being a care team You love each other, but suddenly most conversations are about medication, forms, school emails and who last booked the physio. Date night becomes “Did you order more syringes?” Sexy. 3. One of you is coping. The other is… not. This is a classic. One parent goes into practical, problem-solving mode. The other is quietly grieving the life they imagined. Both responses are valid. Both can be deeply annoying to the other person if you’re not careful. 4. Roles become uneven (and resentment sneaks in) Often without meaning to, one partner becomes the default parent; the one who knows the meds, the signs, the paperwork, the contingency plans. The other might feel pushed out. Or the first might feel unsupported. Neither is wrong. Both are exhausted. 5. The grief doesn’t arrive once; it keeps turning up Diagnosis isn’t a single moment. It reappears at birthdays, school gates, milestones that don’t look how you expected. Grief has a habit of leaking out sideways, usually during arguments about absolutely nothing. If your relationship struggles, it’s not because you’re doing it wrong. Strain doesn’t mean weakness. Arguments don’t mean lack of love. And separation doesn’t mean someone failed. Parenting a child with complex needs is a long-term, high-stakes, emotionally demanding role, often with very little support. Many couples are simply trying to survive in a system that wasn’t built for them. Sometimes staying together is the right choice. Sometimes parting ways is the healthiest one. Neither deserves shame. What does help (when everything feels like too much)? No one has spare time or energy, but small things can help: Saying out loud: “This is hard, and I’m struggling.” Remembering you’re on the same side, even when you’re snapping. Sharing the invisible load where possible; or at least acknowledging it exists. Accepting support, even if it bruises your independence a bit. Lowering the bar. Then lowering it again. You don’t need weekly date nights or perfect communication. Sometimes surviving the week without falling out counts as intimacy. Many couples do find that raising a disabled child deepens their bond. Shared purpose can build fierce teamwork, compassion and resilience. Others find it exposes cracks that were already there; cracks made wider by pressure, grief and exhaustion. All of it is human. If your relationship feels strained, it doesn’t mean you love your child, or each other, any less. It means you’re doing one of the hardest jobs there is, often without enough help, sleep or space to be yourselves. And if nothing else, you’re probably both overdue a nap.

@jesynelson appears on an Instagram video talking candidly about her daughters' diagnosis with her followers When Jesy Nelson (of Little Mix fame) recently shared in an Instagram video that her twins have been diagnosed with SMA type 1 and that doctors have told her they may never walk, the response was immediate and visceral. Heartbreak. Fear. Love. Support. And for many parents already living in the world of complex or additional needs, a deep, familiar ache. Because this isn’t just celebrity news. This is a story that plays out quietly in hospital rooms, scan appointments and consultant letters every single day. There is a particular kind of grief that comes with an unexpected diagnosis. One that doesn’t always have space to exist. It’s not a lack of love for your child – it’s the mourning of the life you thought they might have, the ease you imagined for them, and the parenthood journey you believed you were stepping into. It’s learning, often overnight, that your path will look very different. Voices like Jesy’s matter because they make that grief visible. Too often, parents of disabled children are expected to be endlessly grateful, relentlessly positive, and quietly resilient. Public conversations rarely allow room for the fear, the anger, the confusion, or the deep sadness that can sit alongside fierce love and devotion. When someone with a platform speaks honestly about those emotions, it gives others permission to acknowledge their own. The reality is that congenital anomalies and complex medical needs are far more common than many people realise. What differs wildly is the level of support families are able to access once those needs are identified. Not every parent carer comes from a background where private therapies, second opinions or specialist treatments are financially possible. Not every parent has the confidence, energy or knowledge to push back when their local authority says “no”. Not every parent’s first language is English, yet they are expected to navigate an overwhelming medical landscape filled with terminology that barely makes sense even to native speakers. Early support, clear information and accessible resources can be life-changing. They can mean the difference between a parent feeling lost and isolated, or informed and empowered. Between a child missing out on vital intervention, or being given the best possible chance to thrive in their own way. That’s why representation matters. And why community matters. Jesy may never read this. But someone else going through what she is, might. Someone sitting in the aftermath of a diagnosis they didn’t see coming. Someone googling late at night, trying to make sense of words they never expected to learn. Someone wondering if they are allowed to grieve while still loving their child with every part of themselves. To that parent: you are not alone. This world may feel unfamiliar and frightening right now, but there is a community here that understands. One that will share knowledge, translate the jargon, stand beside you when you’re told “no”, and remind you that your feelings are valid. This may not be the parenting journey you imagined. But you do not have to navigate this new normal on your own.

Elias sits in front of Santa surrounded by his family There are many things I expect from a Santa’s grotto: A slightly questionable beard. An elf who looks like they’ve been working overtime since mid-November. A photo I will later overanalyse and question why my hair looks like "that". What I did not expect was to walk into a grotto and feel my chest crack open in the best possible way. Elias’ school recommended a special Santa’s grotto experience — hosted by Positive Signs CLC and set up inside Roomes department store in Upminster — and it wasn’t just any grotto. This was a grotto with a Santa who signs. Magic doesn’t even begin to cover it. Because just like that, a Christmas outing went from a nice festive activity to core memory unlocked. For families like ours, these outings come with an invisible checklist: Will this place understand our child? Will we have to explain ourselves? Will we need to translate, adapt, soften expectations, or leave early? Elias is deaf and has complex needs. He doesn’t sign yet himself, but he understands more than people realise. He reads faces, bodies, energy. He feels things deeply — joy included. So when we walked into the grotto and saw Santa and his helper elf signing to one another, something shifted. No awkward pause. No explaining. Just instant inclusion. I even got to practice my own signing — which felt a bit like being invited behind the curtain of Christmas magic. (Turns out Santa’s fluency in BSL is significantly better than mine. I remain firmly at “enthusiastic beginner”.) Elias didn’t sit politely on Santa’s knee. That’s not his style. Instead, he climbed. Pulled himself up. Stood holding Santa’s hands, steady and proud, like this was exactly where he was meant to be. And Santa — without rushing him, without redirecting him — met him right there. There was no pressure to perform. Just connection. Elias was animated. Engaged. Completely himself. And I stood there thinking: This. This is what inclusion looks like. Not grand gestures. Not performative box-ticking. Just a space designed so a child can show up as they are and be welcomed. It would be easy to dismiss this as a “nice extra”. A festive novelty. Something optional. But inclusion isn’t an add-on — it’s the difference between participation and exclusion. Between families feeling like outsiders or feeling like they belong. For parents of children with additional needs, moments like this don’t just create joy for our children — they give us relief. They let us exhale. They remind us that the world can meet our kids halfway. And yes, it’s “just” a Santa’s grotto. But it’s also representation. It’s visibility. It’s a child seeing that magic speaks their language too. We talk a lot about Christmas being “the most wonderful time of the year”. For many families like ours, it can also be the most exhausting — navigating crowds, noise, expectations, and traditions that weren’t built with our children in mind. That’s why places like this matter. Because when Santa signs, when elves adapt, when inclusion is intentional, Christmas becomes what it’s supposed to be: joyful, accessible, and full of wonder. And for us, this visit wasn’t just festive. It was affirming. It was hopeful. It was a reminder that small changes can make a huge difference. So here’s to inclusive grottos. To Santas who sign. To elves who adapt. And to children like Elias, standing proudly in Santa’s hands, exactly where they belong. Possibly the most wonderful time of the year after all.

Elias' mum holds him close to her, his hand on her necklace. They are in the hospital after his birth, and Elias has his NG feeding tube taped to his face Before my son Elias was born (four years ago today!), two of my closest friends were expecting babies just months apart from me. I felt like we'd hit the parenting jackpot! For nine magical months, we were all in sync, comparing pram models, daydreaming about soft play dates and shared birthday parties. I felt like I had found my parenting tribe before my baby had even arrived. And then, everything changed. Elias arrived with complexities we weren’t prepared for. Within weeks, our path veered sharply away from the one we’d envisioned. There were hospital appointments, early interventions, diagnoses, and a silent, overwhelming grief for the parenting experience I thought I’d have. My friends did their best. They sent messages. They invited me to the groups, the meetups, the coffee catchups. But I couldn’t do it. I was exhausted — emotionally and physically — and I couldn’t relate anymore. I wasn’t weighing up which baby-led weaning book to follow; I was learning to read MRI reports and how to reinsert Elias' feeding tube when he pulled it out (cue a Christmas morning trip to A&E in my Christmas best when I eventually decided it was time to get confident doing it myself). While their babies were hitting milestones, mine was missing them. It hurt. So, I retreated. I fiercely defended Elias, I still do. But back then, it was more about survival. I pushed people away because I was scared they wouldn’t understand. And honestly, sometimes they didn’t. Finding Peace in the Shift One of the hardest things I’ve had to learn is that parenting a disabled child puts you on a different path. Not better. Not worse. Just different . And different can still be beautiful, even when it’s lonely at times. It took me a while to realise that not every friendship can or will survive that shift. Some people will still expect you to be the old version of yourself, but the reality is you've changed at a molecular level now, and your life will never be the same. Some won’t know what to say. Some will say the wrong things. Others will slowly fade because they don’t know how to hold space for your grief and  your joy. And you know what? That’s OK. Because my wonderful Elias deserves to be surrounded by people who see him. Who love him. Who make space for him. And so do I. Practical Ways to Navigate Friendships as a Complex Needs Parent If you’re a new parent navigating this emotional landscape, here’s what’s helped me: 1. Give yourself permission to grieve It doesn’t mean you love your child any less. It just means you’re human. Let yourself feel the loss of what you expected, it clears the way to embrace what is. 2. Be honest with your friends The good ones will want to know how to support you, but they may not have the language. Tell them what helps and what doesn’t. Share your world, even the messy bits. 3. Find common ground You may not be able to bond over weaning or sleep training, but you can still laugh about how little time you get to shower, or cry about how relentless parenting can be. 4. Let go without guilt If someone makes you feel less than, or like your child’s differences are an inconvenience, let them go. Your energy is precious, and your child is not up for debate. 5. Find your new village Connect with other SEND parents. Online, in person, however you can. There’s something healing about being with people who just get it  without needing the full backstory. A Beautiful, Unexpected Road I love my friends. I always will. We no longer share the same parenting experience for our three boys, but we’ve learned to meet in the middle and honour both paths. If you’re in the thick of it, feeling like the world is moving on without you, you're not alone. This road may be different, but it’s paved with just as much love, joy, and meaning. And the right people will walk it with you, even if it takes a while for your steps to align again. Your child is worth fighting for. Your peace is worth protecting. And your story, complicated, beautiful, and unexpected, is still unfolding.