When someone says “Family Festival at the British Library,” you might imagine a gentle, well-organised affair, perhaps with polite queues and soft-spoken storytellers surrounded by wide-eyed children. Wrong . Last weekend, Elias and I attended Story Explorers at the British Library — an inclusive, slightly chaotic, storytelling adventure where your best hope is to plan nothing, pack snacks, and prepare to fight other eager families for a spot in sessions including interpretive dance and suspiciously energetic toddlers. Although it is a free event, booking in advance is essential, and we managed to get coveted tickets thanks to the wonderful team at Sense UK (big love to the team at our local Sense Centre, may your coffee always be hot and your Wi-Fi never drop). Biggest tip: Get. There. Early. Sessions fill up faster than a soft play on a rainy Sunday. We got turned away from so many I started to feel like I had personally offended the volunteer team manning the doors. One of the highlights was the "Boogie in the Blue" dance session. I wasn’t sure how Elias would manage — he’s not exactly Strictly material, confined to his specialist pram on outings, and I was braced for a quiet retreat to the sidelines to enjoy watching everyone else take part. But the host was an absolute gem. She spotted Elias immediately, made sure he had a role in every activity, and even let him lead the party train. And when it came to pretending to swim under a sea of shimmering fabric, he got to go full Aquaman. There was no awkwardness, no “What’s his diagnosis?” questions — just open arms and a lot of cheering. It’s hard to explain what that kind of welcome means when you’re so used to being the “different” family. There was also a performance by the Chickenshed company, who are always incredible, even if this time there wasn’t a BSL interpreter. I did my best with my half-baked signing knowledge (pretty sure I made up a couple signs when they started talking about monsters and adventures), but it was a good reminder of how important it is that every  session be accessible, not just some. Despite the queueing, the missed sessions, and the fact I left rather frazzled and covered in crisp dust, it was a great day. The energy, the thoughtfulness, the sheer effort that went into making this event accessible and joyful for families like ours — it matters more than words can say. Would I go again? Yes. Would I arrive at the sessions I want to attend an hour early with a flask and battle plan? Also yes. There is a special SEND Storytelling Workshop running August 4 & 18, 2025, check it out here .

“They Gave Him the Head of an Eight-Year-Old”: Navigating Cranioplasty and Courage **WARNING: There are pictures of Elias post-surgery in this post** Two weeks before my 35th birthday, our family braced for something far more significant than cake and candles. Elias, our bright, brave little boy, was admitted to hospital for a cranioplasty — a complex surgery to reshape his skull. We’d known this moment might come. The sutures at the back of his skull had fused prematurely, a condition known as lambdoid craniosynostosis, which meant his skull couldn’t expand fast enough to accommodate the natural growth of his brain. Since diagnosis, he’d had six-monthly CT scans to check for signs of rising intracranial pressure, and even spent 48 hours hooked up to a monitor to track any spikes overnight. Eventually, the decision was made: it was time to operate. Apparently, your skull stops growing at around eight years old. So Elias was, quite literally, given the head of an eight-year-old to prepare him for his future. The surgeon was very delicate as he explained (full of surgeon-pride) that he'd given our son a "normal" shaped skull. Did I get a little upset by this? Naturally. Did I know he only meant well? Kinda. While technically not brain surgery, it came painfully close. The consent forms alone were enough to turn your stomach — pages and pages of hypotheticals, complications, and cold clinical language. Signing them felt like saying: Yes, I’m okay with you possibly causing irreversible damage to my child. Thank you very much. The surgery itself went well (so I'm told), though there was an unexplained delay that sent me spiralling into full panic mode. Waiting, not knowing — it’s unbearable, I sat outside Koala Ward unashamedly crying. But eventually, he was out, and he looked… different. The surgery is technically classified as plastic surgery, and you could see why. His forehead, which had always protruded ever so slightly, had been carefully reshaped. It was still Elias, but altered. At first, he seemed fine. He was eating with gusto, and we had to track bowel movements like a newborn. We were moved to a private room with an actual bed for me! Then, his eyes began to swell shut — a normal response to this type of surgery, the doctors assured us. But imagine being deaf, as Elias is, and suddenly unable to see either. It was heartbreaking. For two days, he used his tiny fingers to prise open his swollen eyelids just to catch a glimpse of us. We held space for him, not always knowing how to help, but doing our best to anchor him through the haze. Some moments offered surreal relief. His auntie came to visit. I popped down to the hospital cafeteria and bumped into Chase from Paw Patrol in the lifts. You take your joys where you can get them. Shockingly, he was discharged after just four nights. While happy, I couldn’t believe it. We were sent home with this fragile, freshly operated-on little boy, whose skull now had all these new soft spots, and I felt like I was taking care of a bomb. I've always found soft spots stressful with both of my kids when they were born, and now here we were, doing it all over again with a child recovering from major skull surgery. We ended up having to shave off all his gorgeous curls as he started to look ridiculous with his little tuft of hair at the front. This was yet another stressful moment for me, but low stakes in the grand scheme of things. I called the neurosurgery team repeatedly in the first couple of weeks we had him home, concerned that I could see all the grooves in his skull, concerned his stitches looked too pink, just... generally concerned. The nurse in charge was extremely patient, and explained all my concerns were just normal stages of healing. But now? Elias is doing brilliantly. His hair has grown back, he’s back to his happy, stubborn self, and his latest scans show everything is progressing well. The incredible team at GOSH is happy, and so are we — relieved, grateful, and still processing everything. Sometimes, in this life of complex parenting, you don’t realise the weight you’ve been carrying until you finally get to exhale.

Elias holds his mother's hands for support as he stands on a blanket in a garden It’s one of the most instinctive things a parent can do: when your child cries, you scoop them up into your arms, hold them close, whisper soothing words, and wait for the storm to pass. That’s what I do with Elias’ brother. When he's hurt or upset, he runs to me, seeking contact, safety, a familiar heartbeat. But it’s not like that with Elias. Elias is tactile defensive, meaning that touch — something most of us associate with comfort — can feel overwhelming for him. When he cries, my instinct is to hold and reassure him. But when I do, it often escalates his distress. The very thing I want to offer — my arms, my closeness — makes it worse. Frankly, there is nothing that prepares you for the experience of not being able to hug your own child when they’re in pain. Touch, for Elias, has to be on his own terms. There are rare and precious moments when he reaches out, he lays a hand on mine or melts into a cuddle at bedtime, and I hold onto those fiercely. But most days, I have to find other ways to show love. Through predictability, eye contact, or just being near. It’s a different kind of parenting. It’s not what I imagined. And some days it hurts, especially when I’m holding one child while watching the other struggle alone just feet away. But it has taught me something powerful: love isn’t measured by touch. It’s measured showing up. By knowing what not to do as much as what to do. A Few Things That Make a Difference Respect their boundaries. It sounds obvious, but it's easy to forget in emotional moments. Pause and let them lead. Use deep pressure, not light touch. Some children tolerate firm pressure better than a light graze. Compression garments, weighted blankets, or deep-pressure massage (when welcomed) can sometimes offer comfort. Offer alternative ways to connect. For us, it's sitting next to him allowing him to understand we're here, rather than reach out physically. Create a sensory-friendly environment. Minimising other sensory input like bright lights, background noise, or rough fabrics can reduce overall overwhelm. Involve an OT. Occupational therapists with sensory integration training have been invaluable in helping us understand Elias’ needs and try new approaches safely. If you're parenting a child with tactile defensiveness or sensory differences, I am right there with you. I know how strange it feels to explain to others why your child doesn't want to be held, or why they flinch at a gentle brush of the arm. It's not rejection. It's not failure. It's just difference. And in that difference, we find new ways to love.

There are certain photos of my boys that tell the same story; one beaming with the cheeky grin of a toddler who’s just discovered he can do something new (or scowling because I've made him take a picture with his brother as per this post), the other gently watching on, calm as ever. At first glance, you’d assume the one doing the exploring was the older sibling. But he’s not. Elias is the big brother. The one who made me a mum. The one who taught me more about strength and joy and complexity than I thought possible. And now, his younger brother - his shadow, his sidekick - is starting to outpace him. First it was the milestones: sitting unaided, standing, walking, running. Now it’s the more visible things. Like size. Strength. The weight of him on my lap. Strangers calling Elias the younger brother as he sits back. And let me tell you: it’s a strange kind of heartbreak. I never expected either of my kids to be giants, we’re not exactly a tall family, and CHARGE children are often much shorter in stature, but I always imagined Elias would have that big brother edge. That gentle authority of being first. Lately though, it feels like things are shifting. We’re entering uncharted waters where the younger sibling is becoming - physically and developmentally - the ‘older’ one. And while age still gives Elias that chronological crown, life isn’t always so neat with its timelines. I catch myself watching them play and wondering what they’ll understand of each other in the years to come. Will Elias mind being the smaller one? Will his brother notice the pace he’s gaining? Will he slow down sometimes, just to sit with Elias in his world? I hope so. Because while this stage is beautiful, filled with giggles and toddles and chubby hands reaching for everything, it’s also bittersweet. It’s a reminder of the paths we’re on. That Elias’s journey is unique. Slower in places, richer in others. And that comparison, though inevitable, is a weight I don’t want either of them to carry. For now, we navigate it gently. We celebrate every new step, no matter who takes it. We make space for the complexity, for the joy and the ache to live side by side. Because that’s what parenting children with additional needs often looks like: holding two truths in one hand, and loving fiercely with the other. And if you’re reading this and nodding along, maybe feeling the same twinge as your youngest starts to reach heights your eldest is still working toward, just know you’re not alone. It’s okay to feel the mix. It’s okay to grieve and rejoice all at once. We’re walking this path together, at different paces, in different shoes, but always side by side.

Motability concept car with a seamless ramp, easily accessible seats and enough space to fit a wheelchair It’s not often I’m actually impressed by a concept car, they're usually just trying to be as cool as possible without function, but the one I saw recently wasn’t just cool, it was clever. At MOVE London, Motability were out in force, not just showcasing their work but actively challenging the automotive industry. Their message was clear: accessibility shouldn't be an afterthought. It should be baked into the design, from the very first sketch. Right now, most vehicles on the road aren’t built with disabled passengers or drivers in mind. Adaptations are retrofitted, often clunky, and wildly expensive. But what if cars came ready-made with accessibility features? Lower sills. Wider door openings. Built-in ramps. Easily removed seats. Integrated tech for independent driving or transferring. The sort of design decisions that say: we see you. That’s the future Motability is pushing for. And honestly, it’s about time. For many families like ours, the Motability Scheme is more than just a convenience, it’s a lifeline. When Elias turned three, we applied, and while the process was relatively straightforward, it was also a reminder of how many hoops families with additional needs still have to jump through just to achieve a baseline level of normal. The scheme allows eligible families to lease a vehicle using a portion of their child’s Disability Living Allowance. That vehicle becomes your second home, especially when hospital appointments, therapy sessions, and sensory-friendly days out are your norm. It’s freedom. It’s flexibility. But it could be even better if the vehicle was designed from the start with your child in mind. So when I saw Motability’s prototype and heard their vision, I felt genuinely hopeful. They’re not just offering support, they’re driving change at the highest level. And if you’re new to the scheme or just starting the process now that your little one has turned three, feel free to reach out. I’ve been there. I know how daunting it can feel. But it’s worth it. Because one day, I hope Elias can climb into a car designed with him in mind. Not adapted, not compromised; just right.

As a parent, you dream of the day when your child says their first word. You imagine the sound of their tiny voice saying “mama” or “dada,” and your heart swells with anticipation. For my partner and me, that dream remains just that; a dream. Our beautiful boy, Elias, is two years old, deaf, and non-verbal. His world is a quiet one, and ours is filled with the noise of longing to understand him. Every day with Elias is a mixture of joy and heartache. His smile lights up the room, we cherish the sound of his laughter, but there are moments when I look into his big, curious eyes and wish with every fibre of my being that I knew what he was thinking. I want to completely understand his needs, his fears, his joys. I want to break down the communication barrier that stands like an unyielding wall between us. I watch him play, his small hands exploring the world around him. He is fascinated by everything, from the way sunlight filters through the leaves to the texture of his favourite teddy. I see his excitement, his frustration, and his curiosity, but I can't always decipher what he wants to convey. It's sometimes like we are living in two different worlds, each of us reaching out, trying to bridge the gap, yet always falling just short. When Elias cries, my heart breaks a little more each time. I hold him when he will let me, rocking him gently, whispering soothing words he cannot hear. I want to tell him it's going to be okay, that Mummy is here, that he is safe and loved beyond measure. But the words feel empty because I know he cannot understand them. I wish I could crawl inside his mind, just for a moment, to understand the storm of emotions he must feel but cannot express. I dream of the day Elias can tell us he loves us. I don’t care if it’s in sign language, through a picture he draws, or a gesture he makes. I just want to know. I want to hear “I love you” in whatever form it takes, to know that he feels the depth of love we have for him. I want to see his emotions painted in the air, tangible and real, breaking free from the silence that binds them. We work tirelessly to find ways to communicate with him. We learn sign language, we use visual aids, we try to read his cues. There are small victories, moments when he seems to sign “more”, and we celebrate like it is the greatest achievement. Because, in many ways, it is. Each sign is a step closer to understanding him, to bridging that vast expanse that separates us. But there are days when it feels like we are not making progress. Days when the frustration spills over, and I feel like I am failing him as a mother. I just want to be able to comfort him, to share in his world, to tell him I love him in a way he can grasp. I want to tear down the invisible walls and hold him close, knowing he understands every unspoken word. Elias, my sweet boy, if you could hear me, I would tell you that you are the light of our lives. I would tell you that your presence is more precious than any words. I would tell you that we will never stop trying to reach you, to understand you, to love you in every way possible. I will keep learning, keep trying, and keep loving you with all my heart. I will cherish every smile, every touch, every sign. I will hold onto the hope that one day, we will break down the barriers between us. And until then, know that my love for you is infinite, spoken or unspoken, heard or unheard. Elias, I wish I knew what you were thinking. And I hope, with every part of me, that one day, you will find a way to tell me.

Let’s hear it for the dads. The ones who hold it all together, even when it’s falling apart. The ones quietly researching late into the night, learning everything they can about their child’s condition, because love looks like knowledge when you’re parenting a child with complex needs. The ones who’ve become expert physios, sleep whisperers, and speech therapy assistants. The ones who bring humour to the hardest days, who can still make their child belly laugh, even after a sleepless night or a difficult appointment. Let’s celebrate the dads who advocate just as fiercely as the mums. Who come to the hospital appointments, sit through the EHCP meetings, and ask all the right questions. The ones who push for what their family needs, even when the system makes it near impossible. Let’s celebrate the dads who stay in the background sometimes, not because they’re less involved, but because they know when to step back and when to step in. The ones who pick up extra shifts, who cook dinner so their partner can breathe, who don’t always get the social media shout-outs, but are quietly holding everything up. Let’s not forget: parent carers often walk a tightrope between survival and strength. And in many families, dad is the net underneath, ready to catch everyone when it gets too much. To the stepdads, the grandads, the bonus dads, and father figures; thank you too. Your love counts. Your presence matters. We see you. We celebrate you. And we’re so grateful you’re in this village. Happy Father’s Day . From all of us at the Complex Parenting Group.

I’ve been thinking lately about how delicate the balance is between work and home when you’re a parent carer. I feel incredibly lucky to have a job that allows me to work remotely and flexibly. It’s the only reason I’m still in the workforce. It’s the reason I can attend medical appointments without needing to beg for time off. It’s not perfect, but it’s doable. And I don’t take that for granted for a second. But the truth is, I live with a quiet anxiety that one small shift at work, a change in leadership, a new policy, a restructuring, could unravel everything. And when I say everything, I don’t just mean my career. I mean the fragile ecosystem of my entire family. For families like mine, where a child has complex needs, work isn’t just about income or personal fulfilment. It’s about survival. It’s about keeping food on the table while also being available for medical appointments, school meetings, hospital stays, emergency calls, and the daily (often invisible) labour of care that sits on top of an already full-time role. And that’s before we’ve even begun to talk about sleep deprivation, mental load, or the emotional toll. It’s a constant calculation of how much we can give, and what happens when we simply can’t. The reality is, many parent carers aren’t as lucky as I am. They’re pushed out of the workforce, not because they don’t want to work, but because the structures around them make it near impossible. Rigid hours, lack of understanding, presenteeism, and assumptions about reliability create an environment where flexibility is seen as a luxury rather than a necessity. And here’s the thing: these families aren’t a small minority. And they’re not lacking in talent, commitment, or capability. They just need support. So, what can companies do to retain and uplift parent carers in the workforce? Embed true flexibility; not just as a perk, but as a core part of company culture. Train managers to lead with empathy and awareness of different lived experiences. Build policies that support carers (parental leave, carers’ leave, flexible hours, remote options). Listen to parent carers and involve them in shaping solutions. Measure performance by output, not hours logged or office presence. Because when companies create space for carers to thrive, they don’t just help individual families, they keep brilliant, passionate, multi-skilled people in the workforce. People who are problem solvers by necessity, who know how to juggle priorities, work under pressure, and show up with resilience. I’m proud of what I contribute to my job, just as I’m proud of what I do at home. But it shouldn’t feel like one is always in conflict with the other. To all the working parent carers out there: I see you. I am you. And we deserve to work in ways that don’t put our families at risk just for doing our best.

A determined young boy skillfully attempts to stand by getting into a bear pose, he is surrounded by toys, embodying perseverance and growth in overcoming delayed motor skills. First off: sorry. It’s been a while. A proper while. Life, as it does, happened. It didn’t knock gently either; it barged in, flung its shoes off in the hallway and made itself very comfortable. Between medical appointments, balancing work, trying to be present for both my children, forgotten laundry cycles, and our first mum and dad holiday in five years, something had to give. And unfortunately, it was this space. But I’m back. With something that’s been sitting heavy on my chest for a while now. Let’s talk about the things our children do elsewhere . The magic tricks they save for everyone but us. The milestones they pull out of their hat at school or nursery, the things we’ve waited so long  to see at home, only to hear secondhand from a keyworker or teacher, with that well-meaning smile and a “you must be so proud!” And of course, we are  proud. Proud with a twist of heartbreak. My son, for example, has decided that he can climb up onto the sofas at school. Something he doesn't even seem close to doing at home. Cue the emotional spiral: Why not at home? Am I doing something wrong? Is he just happier at school? Is it me? It’s an odd grief, missing out on a milestone that technically has  been reached. It’s not that he can’t , it’s that he won’t  (at least, not with me). And that stings in a way I wasn’t expecting. I know school is the best place for him. His 1:1 is brilliant (more on that later). His world expands there in ways I could never replicate. But it’s still hard. It’s hard not to take it personally. Hard not to feel like the one person being left out of the big reveal. But here’s what I’m slowly learning, in the middle of the mess: our kids are not performing monkeys. They’re not on this earth to tick boxes on our timeline. And their preferences, their choices, those are not reflections of our worth as parents. Sometimes they’ll feel safer trying things with someone else. Sometimes we are the safe place not  to try. The one spot they don’t have to push. And that’s hard, but also - maybe - a little bit beautiful. So to anyone else feeling the ache of missing a moment, you’re not alone. It doesn’t make you less. It doesn’t mean they love you any less. It just means your child is complex, clever, and (sometimes infuriatingly) on their own schedule. I’m still waiting for the great sofa summit at home. And if it never comes? That’s okay too. I’ll sit on the floor beside him and wait. Because wherever he feels ready; that’s where we’ll meet.

When Pampers announced the launch of their new Size 9 nappies, it should have been a moment of celebration. For so many families with children who have additional needs, this is a breakthrough - an answer to a problem we have been navigating for far too long. Yet, instead of championing the positive impact this will have on the SEND community, the media and social commentators have focused on all the wrong things. The headlines and hot takes have largely revolved around fears of rising obesity rates, questioning why children “that old” still need nappies, and reinforcing outdated expectations of childhood development. The real story, the one that should be making waves, is how this product will provide dignity, comfort, and practical support for families who have struggled to find suitable solutions for their children’s needs. For many children with disabilities or medical conditions, potty training isn’t as straightforward as it is for their neurotypical peers. Some may never be fully continent due to their conditions, and others might take much longer to reach that milestone. Until now, families have had limited options - often forced to rely on ill-fitting products designed for adults, expensive specialist brands, or battling through frustrating supply issues with NHS provisions. Pampers’ decision to expand their size range acknowledges a reality that has long been overlooked by mainstream brands, and that is something to be applauded. The availability of Size 9 nappies doesn’t encourage parents to “keep” their children in nappies longer than necessary, nor does it suggest a societal failure in potty training. It simply means that those who genuinely need them now have a more accessible, affordable, and appropriate option. That is the real story here - the one that deserves attention and support. To the parents who feel relieved by this news: I see you. To the children who will benefit from the dignity of a well-fitting product: you deserve this. And to the critics who are missing the point - perhaps take a moment to listen to the families who know this reality best. Pampers, thank you for taking this step. Let’s hope this is just the beginning of more brands recognising and catering to the diverse needs of all children.

If we're lucky, Mother’s Day is often filled with flowers, cards, and breakfast in bed. It’s a day of celebration, appreciation, and love. But for mothers of children with additional or complex needs, I think that today carries a different weight. It’s a day to reflect on the strength it takes to show up, day after day, through exhaustion, uncertainty, and challenges that many don’t see or understand. Parenting is hard. Parenting a child with complex needs is something else entirely. It’s advocating in every space you enter. It’s learning medical jargon you never wanted to know. It’s navigating therapies, appointments, and sleepless nights. It’s being the one who holds everything together when you’re barely holding on yourself. And the hardest part? We don’t always talk about it. We put on a brave face. We say, “I’m fine” when we’re not. We smile through the tough moments because admitting the truth feels too heavy, too raw. But the reality is, some days, I just want to curl up in a ball and hide from it all. I want a moment where the weight isn’t so crushing, where the mental and emotional exhaustion doesn’t feel like it might swallow me whole. But mothers like us don’t get that option. We keep going. We keep showing up because our children need us to. And so today, on Mother’s Day, I want to take a moment to acknowledge and celebrate the mothers who push through the hard days, the ones who show up when it feels impossible, and the ones who hold on even when they don’t know how they’re doing it. To every mother raising a child with additional needs: you are seen, you are valued, and you are stronger than you realise. Today, I celebrate you. Not just for the love you give, but for the strength you show. Because showing up, even on the hardest days, is the greatest act of love there is. Happy Mother’s Day to all the warriors, the advocates, the caregivers, and the mums who keep going, no matter what. You are incredible.

A young boy kneels up on his play mat, a cochlear implant visible on his right ear Today, I wanted to share a bit about our journey raising our amazing deaf son and how it has transformed our lives in ways we never anticipated. If you’re part of the complex parenting world like we are, you’ll know that every child brings their own unique set of joys and challenges. Our son’s deafness has been a journey of discovery, acceptance, and growth for our entire family. When we first found out our son was deaf, it felt like the world came crashing down around us suddenly. This wasn't the version of parenthood we'd envisioned. There were so many questions and uncertainties. How would we communicate? What support was available? Would he be happy and thrive? It was a steep learning curve, but looking back, it’s incredible to see how far we've come and how much we've learned. One of the biggest blessings has been discovering the amazing provisions and support systems out there. From early intervention services to specialist schools with an entire BSL curriculum, we've encountered so many dedicated professionals who have helped us along the way. We quickly learned that being deaf isn’t a barrier to a full and vibrant life, it’s just a different way of experiencing the world. We've started learning British Sign Language (BSL), and it’s been a fantastic experience for all of us. Learning BSL wasn’t just about communication; it was about embracing a new culture and community. One of the most challenging aspects has been dealing with societal misconceptions. So many people seem to think that being deaf is something that needs to be “fixed.” But our son isn’t broken; he’s perfect just the way he is. It’s frustrating when people assume that a cochlear implant or hearing aids are the only solutions. While these can be beneficial for some, and Elias does have a cochlear implant, they’re not the be-all and end-all. We’ve had to educate friends, family, and even strangers about deafness. It’s been eye-opening to realise how little most people know about the deaf community and its rich culture. Yes, our son might communicate differently, but he’s thriving, happy, and full of life. And isn’t that what really matters? Every milestone our son reaches feels like a huge victory, not because he's “overcoming” deafness, but because he's growing and learning like any other child. Whether it's showing recognition of a new sign, mastering a new gross motor skill, or simply making new friends, we celebrate his achievements with pride. Raising a deaf child has taught us patience, resilience, and the importance of advocating for what’s right. It’s shown us that different doesn’t mean less, and it’s given us a deeper appreciation for all the unique qualities that make each person special. To all the parents out there navigating similar paths, know that you’re not alone. Embrace the journey, educate those around you (as best as you can, with the energy you can spare), and remember that your child is perfect just as they are. Our son has enriched our lives beyond measure, and we wouldn’t have it any other way.