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@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.

Elias and his 1:1 kneeling in front of a window together, she has one hand on his and she looks at him lovingly One of the things no one tells you when you become a parent to a child with complex needs is just how many people will become part of your child’s daily life. And not just in a “they work with them” kind of way, but in a "they know your child’s favourite snack, understand his cues better than some family members, and bring him birthday presents" kind of way. Finding the right team to help raise your child (because let's be real, this what your support team is doing) can feel like its own full-time job. And even when you finally get it right, there’s always that tiny voice in the back of your mind whispering, please don’t leave us… We’ve been incredibly lucky with Elias. His first 1:1 when he started school was nothing short of brilliant, and her replacement when she left was equally phenomenal. The kind of phenomenal that other schools apparently noticed, because both were swiftly poached like rare talent in the Premier League. We recently found out after three short months, the woman who has become part of our family (I speak to her everyday, despite never actually meeting in person) is leaving this week. As proud as we were that they were recognised for their talent, it’s hard not to feel that little sting when your child builds a beautiful connection with someone… and then it just ends. We joke (only a little seriously on my behalf) that it’s starting to feel personal at this point. Thankfully, the universe gave a little back when one of them offered to stay part of the family as holiday cover; a blessing we didn’t know we needed until we had it. Having someone who knows Elias, understands him, and genuinely enjoys spending time with him? You can’t teach that. You can’t buy that either. Trust me, I’ve tried. Transport has been its own journey (literally). Elias has to take a cab to and from school every day, no small commute. And finding the right people for that role was harder than it should have been. We had a few who simply realised it wasn’t for them. Fair enough… but also, * deep sigh *. Then, like magic, we were assigned the most incredible PA and driver team. The kind who chat to us like family, celebrate Elias’s milestones, and turn up with birthday presents. They’ve become part of our village without even trying. And now, we’re here again: waiting to meet Elias’s next 1:1, being told her name but awaiting the introduction. There’s a familiar mix of hope and hesitation. We know how important this role is. We know how much these relationships shape Elias’s development, confidence, and day-to-day joy. We know how deeply we feel it when they leave. But we still choose optimism. Because the right people do  exist. And when they come along, they can transform everything. So here’s what we’re holding onto as we wait: That she’s as warm, intuitive, and invested as the incredible women who came before her. That she sees Elias for who he is and meets him where he is. That she sticks around long enough to make a difference; not just for him, but for us too. And maybe, just maybe, that this time it won’t feel like the universe is playing musical chairs with our support system. Because every family raising a child with additional needs knows: finding the right team isn’t just practical, it’s personal. And when you do finally find them? They become part of your story. Elias' 1:1 provides him support as he takes some tentative steps, she is genuinely excited and happy for him and signs 'well done' when he finishes.

Elias and his brother lie sleeping in a hospital bed together For just under a week, Elias hadn’t been himself. He was distressed in a way that felt relentless. Banging his head. Crying. Unable to settle. And because he’s non-verbal, we were left doing what we always do: Guessing. Interpreting. Watching every movement and behaviour, trying to piece together a story from clues no one prepares you to read. I took him to the GP. Maybe it was an ear infection. A sore throat. Something small but painful that he just couldn’t tell us about. The GP panicked and sent us straight to A&E. She felt she wasn't specialised enough to make a call for our complex child. What followed was hours in a waiting room full of sick children, coughing and crying, while Elias spiralled and I tried to keep him (and myself) sane. Somewhere in that waiting room, I picked up one of the worst flus I’ve ever had. When we were finally seen, the doctor checked Elias’s ears and throat. No infection. No obvious cause. It was put down to “behavioural” and we were sent on our way. But Elias didn’t get better. A week passed and he was still banging his head as hard as ever. Still distressed. Still not himself. Then he started vomiting, and that’s when the panic took over. Elias has a history of raised intracranial pressure. Once you’ve lived through something like that, your mind never really resets. Vomiting stops being just vomiting. Distress carries weight. Everything feels loaded. We went back to A&E on a Saturday morning, this time dragging his little brother along for the worst afternoon of his life for very different reasons. And we waited. Hours again. Watching Elias so uncomfortable, questioning the wait, asking when someone might see us. At one point, someone tried to reassure us by saying, “You’re in the same boat as every family here.” I froze. Because we’re not. And I wish, deeply, that we were. Our child has complex additional needs. He has a medical history that fills two pages of A4. He has specialists, past diagnoses, and lived experiences that permanently shape how we read symptoms. Vomiting isn’t neutral for us. Head banging isn’t a phase or bad behaviour; it’s communication. We don’t have the luxury of waiting things out. Of seeing how he is in the morning. Every delay forces us to mentally revisit worst-case scenarios we’ve already survived once. Being told we’re the same as every other family might sound comforting, but in that moment it erased the reality we live with every day. It flattened our fear. It overlooked the extra vigilance that comes with parenting a child whose body has already proven it can fail him. While we don’t want to be exceptional. We don’t want to be “the complex case.” We would give anything to be just another family in that waiting room. But we’re not. And sometimes that reality needs to be acknowledged. Eventually, a consultant agreed this wasn’t straightforward. I made sure Elias’s history was clear. I was not leaving without answers, and I certainly wasn’t leaving without a CT scan. After sedation and imaging, the results came back reassuring. No raised intracranial pressure. No immediate danger. Relief came, but it was tangled with confusion. If it wasn’t that, then what was causing so much pain? Our local hospital doctor was on the phone to his neurosurgeon at GOSH, trying to problem-solve. We began preparing ourselves for a weekend admission, mentally rearranging everything again. Then the doctor wanted to check one more thing when we questioned if his cochlear implant had moved (again). And there it was. Tonsillitis. She couldn’t believe it hadn’t been identified earlier (neither could I given one of the doctors had told me a week before there was nothing concerning, but let's not quibble these details now). We were sent home with antibiotics and a whole day wasted. The answer was simple in the end. Painful, yes, but manageable. Contained. Not catastrophic. But this is the reality for families like ours: Our minds always go to the worst first. They have to. We have to rule out the huge, terrifying possibilities before we can focus on the smaller, more ordinary explanations. Because when your child can’t tell you where it hurts, or how much, or why, there is no room for assumption. Only vigilance. Only advocacy. Only pushing until you are heard. We know we have a lifetime of Saturdays like this ahead of us. Of hospital visits that end in relief rather than resolution. Of being told “everything looks fine” while your instincts scream otherwise. This was one Saturday we could very easily have done without. But once again, we were reminded: for us, peace only comes after the worst has been ruled out.

Elias' mum cradles her baby bump at her baby shower, smiling widely with a green balloon arch in the background Every year, as Elias’ birthday approaches, I feel it coming long before the date itself. The weight in my chest, the lump in my throat, the tears that seem to sit permanently behind my eyes. I’m four years in now, and it still hits me just as hard. These days are some of the hardest. Not because I’m not proud of how far he’s come (or how far we’ve come), but because I can’t help but think back to the woman I was in those days just before he was born. The woman who had no idea what was coming. Who was full of excitement and thought she was about to live one of the happiest days of her life; and instead found herself living through some of the scariest. Every year, my Google Photos brings those memories back. The bump pictures, the smiles, the excitement. And then the hospital photos that followed. The ones that still make my stomach drop as I see my tiny little baby hooked up to machines to help him breathe and keep him alive. It’s like being forced to relive every moment, every fear, every unanswered question all over again. I look at the woman in those photos pre-baby and I used to feel sorry for her. She didn’t know how hard it was about to get. She didn’t know the strength she’d have to find. She didn’t know that life was about to change forever in ways she couldn’t imagine. And yet, she did it. I did it. That’s what I try to remind myself every year: It’s OK to feel sad. It’s OK to grieve the version of life you thought you’d have, even as you love the one you have now with everything in you. I always feel desperately guilty for the sadness; what right do I have to be sad? Elias is here, he's thriving (despite the fact I hate this word), we're so lucky. But those memories haunt you forever, they never leave you alone, no matter how well your child recovers. No one else will ever fully understand what those days mean to you; that mix of joy, grief, pride, and pain. But to the parent reading this who feels the same heaviness on the anniversary of certain milestones in your child's journey, please know this: You’re not broken for feeling that way. You’re not ungrateful. You’re human. You lived through something most people can’t even imagine, and you carry that with you, but you also carry the proof that you made it through. So if the tears come, let them. Light a candle or burn some sage. Look at the photos. Honour that version of yourself who didn’t know what was coming, but kept going anyway. Because she deserves to be remembered too.

A heavily pregnant woman stands in front of a window holding her older child It’s a question I get asked more often than you might think. Always gently, sometimes hesitantly: “Did you know before he was born?” No, we didn’t. And honestly, it wouldn’t have made any difference. Elias leads a different life, one filled with challenges, yes, but also with joy, mischief, stubbornness, laughter, and love. I can’t imagine the world without him in it. So when someone asks if we knew , I always wonder what they’re really asking. Is it curiosity? Empathy? Or something a little heavier: “Would you have… done something differently?” It’s a loaded question, because the subtext is uncomfortable. We don’t like to say it out loud, but it hovers there: Would you have chosen not to have him? And I understand where it comes from. There’s fear in the unknown. Before Elias was born, I had no concept of what “complex needs” really meant. We weren’t prepared, not even close. But then again, what parent truly is? Elias’s genetic condition, CHARGE syndrome, isn’t inherited. Yet we have a 1 in 100 chance of it happening again. When I was 11 weeks pregnant with his younger brother, we went through the risky, painful process of genetic testing, not because we were trying to prevent another child like Elias, but because we wanted to know . Knowledge, we thought, might give us a sense of control in a life that had already taught us how little of that we truly have. But here’s the thing: being armed with that knowledge doesn’t really change the truth. Life doesn’t come with guarantees. Parenting certainly doesn’t. What it does come with, if you’re lucky, is perspective. And my perspective now is simple: every child changes you, but a child like Elias rewrites your definition of what’s important. And our family, our love, our resilience, they exist in this exact shape because Elias has made it that way. So no, we didn’t know before he was born. But knowing wouldn’t have changed a thing. Because even when things look a little different from the way you imagined, it's still means everything to you.

A post on Reddit recently sparked a wave of emotions for me. A family shared that they’d chosen to go on holiday without their autistic son, leaving him with grandparents because he struggles so much with change that it ruins the trip for everyone. They said that by leaving him behind, the rest of the family got to relax and make happy memories together. I understand where they’re coming from, I guess. Family holidays can be intense at the best of times, and when one child finds it distressing or dysregulating, it can affect the whole family dynamic. Parents often feel torn between wanting to protect their child with additional needs and giving their other children the chance to experience something “normal.” There’s even a term for these siblings; glass children , because they’re often seen through, as parents focus their attention on the child who needs more support. But it also made me deeply sad. Because for children who are already excluded by society, from activities, from classrooms, from understanding, being left behind at home while the rest of the family goes away risks reinforcing that sense of otherness. It says, “The world is not built for you. And sometimes, even your family can’t be either.” That’s something I never want for my son. We have two children, one with complex needs and one typically developing. Doing things all together isn’t always easy, it can be chaotic and exhausting. But we would never just leave Elias with someone else so we could go off and have fun as a family of three. Instead, we find ways to make it work differently . Sometimes that means shorter trips, quieter destinations, or more flexible plans. Sometimes it means one of us stays back for a bit while the other takes our younger son on a small adventure. We've had to come up with attack plans for attending big family gatherings where all everyone wants to do is give Elias a massive hug and a kiss, and all he wants to do is fade into the background and be left alone to his own devices. I hope we’re raising Elias’ brother to see him as part of our team. Not a burden or an obstacle to fun, but someone who belongs in every moment we can manage together. And I hope he always knows that we love them both equally, even if “equal” sometimes looks like “different.” That Reddit post did, however, remind me of the importance of balance. I’ve been thinking about planning some mother-son time  because he deserves his own special memories, too. It doesn’t have to be extravagant. Even a day at the park, just the two of us, without the usual interruptions, can mean the world. Balancing the Needs of All Your Children Parenting children with vastly different needs is a constant act of juggling love, guilt, and practicality. Here are a few things that can help: 1. Redefine what “family time” looks like. It doesn’t have to be a traditional holiday or outing. Maybe it’s a picnic in the garden, a car ride to a quiet nature spot, or even a cosy movie night where everyone can participate in their own way. Inclusion can be creative. 2. Create special moments for each child. A child with complex needs often requires more one-on-one care, but that makes it even more vital to carve out intentional time for siblings where they feel seen and heard, too. 3. Talk openly about differences. Avoid pretending everything is the same when it isn’t. Honest, age-appropriate conversations about why a sibling might need extra help can prevent resentment and help build empathy. 4. Share the emotional load. If you have a partner, take turns being the “point person.” If you don’t, lean on your wider network; friends, family, or support groups. No one should have to hold it all alone. 5. Let go of perfection. You won’t always get the balance right. Some days, one child will get more attention than the other. What matters is the long-term message: both are loved, valued, and included. Raising a family that includes a child with complex needs is never going to look picture-perfect...and maybe it’s not supposed to. The beauty often comes from the small victories: a shared laugh, a calm moment, a trip that went mostly  okay. Because in the end, inclusion isn’t about doing everything together all the time. It’s about making sure that every child - every single one  - knows they belong.

Being a parent carer is already a heavy enough load to carry. The sleepless nights, the endless appointments, the juggling of work, family, and the very real emotional weight of raising a child with complex needs. We don’t need extra guilt heaped on us from people who should know better. And yet, that’s exactly what happened last week. U.S. President Donald Trump appeared on TV and claimed that Tylenol (aka paracetamol) causes autism. He urged women not to take it in pregnancy, and he presented the statement as fact. Let’s be clear from the start: this claim is not backed by science . What the Science Actually Says Health authorities across the world – the World Health Organization, the European Medicines Agency, the American College of Obstetricians and Gynecologists, the U.K.’s MHRA – all agree on one thing: there is no conclusive evidence linking paracetamol in pregnancy to autism. Yes, researchers continue to study autism’s many causes, and like with all areas of medicine, new findings are always possible. But right now, there is no proof, no certainty, and no reason to scare parents with sweeping pronouncements. For many of us, paracetamol is one of the few safe and effective options recommended in pregnancy. Suggesting that by following medical advice a mother may have “caused” her child’s autism is not just misleading, it is cruel. The Weight of Blame Parent carers already live under the microscope of blame. We are constantly told we aren’t doing enough therapies, or the “right” diets, or that if we just tried harder, our children would progress more quickly. Now, we’re being told that something as ordinary as taking a painkiller could make us responsible for our child’s diagnosis. It’s a gut punch. A slap in the face to every parent who has ever sat through hours of assessments, heard the word “autism” spoken in a clinical tone, and gone home wondering what they did wrong. You didn’t do anything wrong. And hearing otherwise, especially from global leaders, is devastating. The Misogyny of It All Notice who gets blamed here: mothers. Not fathers. Not society. Not the lack of early intervention or inclusive support. This isn’t new. For decades, mothers have been accused of “causing” autism – from the old “refrigerator mother” theory to today’s vaccine and paracetamol myths. It’s misogyny dressed up as science. It holds women solely responsible for outcomes that are complex, biological, and most of all, nobody’s fault . To hear this rhetoric from powerful men is galling. It feeds into a culture where women’s bodies and choices are endlessly scrutinised, judged, and shamed. Why This Matters to Our Community Parenting a child with complex needs is already hard enough. The emotional toll, the practical struggles, the fight for inclusion and access – these are battles we know too well. When someone with a global platform stands up and says “this is your fault,” it adds another layer of stigma. It isolates us further. It makes our children’s existence sound like something to be explained away, rather than celebrated. We don’t need blame. We need support. We need policies that prioritise accessibility, services that work, schools that welcome our children, and healthcare systems that don’t make us beg. A Final Word to Fellow Parent Carers If you saw those headlines and felt your heart sink, you are not alone. If you felt a wave of guilt crash over you, please hear this: you did not cause your child’s autism . Autism is not your fault. Your child’s needs are not your fault. The difficulties we face as families are not our fault. What is at fault are the systems and voices that keep shaming and blaming instead of building a more inclusive, supportive world. And together, we can keep pushing back. Your child’s autism is not a failure. You are not to blame. And you are not alone.

Parenting a child with complex needs is often described (rather patronisingly) as a “juggling act.” Because the truth is, sometimes it feels more like trying to balance your best china plates on poles that insist on spinning, while the floor shakes beneath you. And more often than not, no matter how hard you try, one of those plates comes crashing down. This was my devastating reality recently. After Elias’s craniofacial surgery, he was due to see Ophthalmology (that's the eye doctor). His squint (or lazy eye) had improved drastically following the surgery so we were excited that it could mean a new prescription. But then the messy, relentless, everyday grind of life got in the way. For one reason or another, we had to cancel the appointment. And we weren't immediately given a new appointment. Then his glasses went missing. Then somehow, days turned into weeks, and weeks turned into months. No appointment. No glasses. No resolution. The guilt crept in quietly at first. A little pang when I thought about how important vision is for Elias. A whisper that maybe I was letting him down. Then, as the months went by, the whisper grew louder: what if I’ve caused regression? What if he’s missing out? What if this is my fault? I tried. I really did. I called, I emailed, I left messages within the hospital app. I even had other departments ring the ophthalmology team internally while we were at other appointments. Silence. It felt like shouting into the void. And each unanswered attempt added to the weight of guilt I was already carrying. Was I doing enough? Was I pushing hard enough? Or was I just failing him? Finally, one day, I randomly got through to the team on the phone. In that moment relief washed over me...until the conversation left me feeling small. You can always reach us by phone the secretary I spoke to said. Like all the emails, voicemails and messages I’d sent had vanished into thin air. As if it had always been simple, as if I hadn’t been clawing at closed doors for months. I left the call with a new appointment in hand… and a heaviness in my chest that hasn’t lifted since. Because here’s the truth: the good news is Elias was seen relatively quickly after that call. The bad news is, the guilt is going to eat me alive. Especially as now he hates his replacement glasses and we've got to go through the whole song and dance of convincing him to wear them again. It’s hard to explain the unique flavour of guilt that comes with being a parent carer. It’s not just about forgetting a school form or missing a playdate. It’s the fear that every delay, every dropped ball, every missed step has real consequences for your child’s health, development, or future. The pressure is crushing. And the truth is, no one can carry it perfectly, all the time. I know, deep down, that we are doing our best in impossible circumstances. I know Elias is resilient. But knowing doesn’t make the guilt disappear. If you’re a parent in the same boat, maybe this resonates. Maybe you’re also carrying the weight of things that slipped through the cracks while you were holding everything else together. If so, please hear me: you are not failing. You are human. And sometimes, just surviving the chaos is the best kind of success.

I want to scream . I want to throw something across the room. I want someone, anyone, to see just how utterly, relentlessly unfair this all is. Is it not enough that our child has a diagnosis that already changes the course of their life, and ours, forever? Is it not enough that we go to sleep and wake up every single day thinking about their needs, their development, their future? Apparently not. Because layered on top of all that is a brutal truth I’ve only come to fully understand since Elias arrived: The world was never built for children like mine. From the football lessons that Elias' little brother can attend with ease, to the parks around us where Elias ends up on the sidelines watching others play on most visits. Accessibility and inclusion are still treated like an optional extra. A feature you bolt on when someone complains. Not the foundation, or the standard. Not even the bare minimum. And so we are left pleading. Pleading for ramps and space for our specialist pram. For BSL interpreters. For sensory-friendly spaces. Pleading for understanding. For flexibility. For the chance to just show up somewhere without having to map out an emergency plan. Pleading to be included. And when the answer is no, or worse, just plain silence, we’re expected to swallow that. With a smile. With gratitude for “what’s already being done.” But you know what? It’s not enough. Because what’s already being done still leaves our children on the margins. It still leaves parents like me paying out of pocket for equipment, therapies, and care because our kids fall through every single crack. It still forces us to choose between our careers and our children, and sometimes between our relationships and our mental health. We give up so much to ensure our children aren’t forgotten by a society that never factored them in to begin with. And the worst part is I didn’t see it until it happened to me. Before Elias, I didn’t think about any of this. I didn’t notice the lack of access. The quiet exclusion. The families missing from spaces we call “inclusive.” And for that, I am ashamed. But I see it now. I feel it. And once you see it, you can’t unsee it. So if you’ve never had to fight for a disabled child, I’m begging you: Don’t wait until it’s your child, or your friend’s, or your niece’s, to start caring. Because we are tired. We are heartbroken. We are full of fire. And some days, it’s all I can do not to scream until my throat is raw, until something cracks, because maybe then someone will finally understand just how loud the silence feels. Our children deserve a world that sees them. That plans for them, and welcomes them, no matter what they need to be able to show up. Until then, we will keep fighting. But I need you to know this: we shouldn’t have to. Want to help families like mine? Don’t just read this post, take action: Advocate for accessible spaces in your community Call out exclusion when you see it — even if it doesn’t affect you directly Support disabled-led charities and organisations Show up, even when it’s uncomfortable

Discipline. It’s one of those words that can feel heavy, especially when you’re raising a child with complex needs. My son Elias is deaf and has additional needs that affect the way he communicates, processes the world, and responds to boundaries. And then there’s his younger brother, who sees and hears it all — the praise, the meltdowns, the moments when Elias gets away with things he wouldn’t. I constantly ask myself: Am I being fair? Am I setting the right example? But fairness in parenting doesn’t mean treating both children the same — it means giving each child what they need to thrive. Why Typical Discipline Doesn’t Always Work Many traditional discipline strategies are based on assumptions that a child can hear, understand abstract reasoning, and regulate emotions consistently. If your child has different processing styles or communication barriers, those assumptions fall apart. In Elias’s case, moments of ‘non-compliance’ are often rooted in frustration, communication breakdowns, sensory overload, or a need for predictability. Punishment doesn’t teach — it escalates. A SEND-Informed Approach to Discipline Here are some key principles supported by SEND specialists: Behaviours are communication. Whether it’s running off, screaming, or throwing — these aren’t “bad behaviours.” They’re signals that something isn’t right. (easier said than done) Regulate before you educate. Calm brains learn. Flooded ones can’t. Helping Elias regulate through sensory play, deep pressure, or calm signing often comes before  asking what happened. Accessible communication matters. Discipline is ineffective if it isn’t understood. Use BSL, visual aids, or total communication strategies to explain boundaries clearly. Collaborate on solutions. Instead of time-outs, we use “time-ins” — moments where I sit with Elias and use signing, visuals, or physical reassurance to help him reset. The Sibling Struggle: How Do You Explain the Difference? This is the hardest part: my younger son sees that Elias doesn’t always get the same consequences. He’s starting to question it. And one day he's going to outright challenge this perceived inequality . When this happens, I will try to gently narrate the situation: “Elias has a different way of learning. His brain works a bit differently, and sometimes he needs help to calm down before we talk. You both have boundaries — we just support you in different ways.” I want to raise children who are emotionally intelligent and compassionate. I believe those lessons start here. What We’re Trying at Home Visual boundaries:  We use signs, pictures, and gesture-based prompts so Elias understands what’s expected. Role play with toys:  Helps both boys practise taking turns, saying sorry, and calming down routines. Emotion cards and mirrors:  Especially important for deaf children, who don’t always have incidental access to others’ emotions. Reinforcement, not punishment:  When Elias cooperates, stays safe, or shares — we celebrate it together. Resources That Help The Explosive Child by Dr. Ross Greene Cerebra’s Parent Guide: Managing Challenging Behaviour NDCS – National Deaf Children’s Society: Parenting Resources Scope’s helpline – emotional support for parents of disabled children Challenging Behaviour Foundation  – practical strategies and peer support In the end, parenting Elias means constantly adapting. It means forgiving myself for the occasional inconsistency. It means explaining to his brother that love sometimes looks different, but never less. Discipline in a SEND household isn’t about fixing a child — it’s about honouring their needs, teaching over time, and keeping the relationship at the heart of it all. Some days we get it right. Some days we just get through. And both are okay.