Category Archives: Special Needs Parenting

“Run, run as fast as you can…”

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“…you can’t catch me, I’m the gingerbread man!”

To be perfectly honest, the last couple of months have been challenging ones. When we made the decision last year to move M to the elemental diet, we did so hoping that it would be the answer we were looking for and that he would finally find some relief from the years of chronic pain and constant bowel problems he’d barely been surviving. The great news is that his symptoms improved dramatically and for the first time in a long-time, M felt healthier and happier than ever before. However, despite the best hopes of GOSH that his NG-tube would only be needed for 2 or 3 months, Mike and I held the opinion that it would more realistically be in place for at least a year, if not longer, and we are rapidly moving closer to that 12-month mark. Of course, what none of us had anticipated was the struggle we would have in reintroducing foods back into M’s diet and over recent weeks, he has found the constant disappointment of failed food trials and the frustration of not being able to eat the same as everyone else almost unbearable to live with. With the agreement of our amazingly supportive dietician, we decided to take an extended break from the challenges, allowing M some much-needed time to come to terms with the realities of life right now.

shutterstock_190648280Having had that much-needed rest, M started to lose that haunted look that had been plaguing him for a few weeks and we finally seemed to have turned the corner and be back on track. We agreed on a new short list of foods to challenge in the run up to Christmas and had finally restarted where we had left off, more or less. However, last weekend, with another 3 unsuccessful attempts at reintroductions to chalk up to experience, tensions started to build and emotions threatened to overwhelm the tenuous calm that had just begun to settle. The final straw broke when G asked Mike and me to taste and review her cupcakes for her Food and Textiles homework. With hot, angry tears cascading down his cheeks, M crawled on to my lap to fitfully confide that it “just wasn’t fair” that everyone else could eat cakes when he couldn’t. Gently stroking his back, I offered to whip up a batch of one of the few sweet treat recipes I’ve managed to adapt for him in the last 12 months: Rice krispie treats? Cupcakes? Scones? Sugar cookies? Nothing seemed to quite hit the necessary mark, so I put my thinking cap on, did a little research and came up with the perfect pre-Christmas treat – Gingerbread!

Thanks to a few sneaky “mini” challenges, we have been able to add some extra flavourings to M’s diet and the most recent success was the addition of ginger to the humble pear crumble, so gingerbread seemed to be the logical next step. I started pulling the ingredients from the cupboards and, 20151121_162110as I weighed and measured out everything I needed, M’s interest was piqued and he pulled up the step-stool to stand by my side and help out. He rolled up his sleeves, washed and then floured his hands and, having selected an interesting array of cookie cutters, brandished my trusty rolling-pin to roll out the gingerbread dough on my pastry board. He chose to use the Christmas cutters as well as the odd one or two Mr Men ones, which have survived from my childhood and spent hours planning out to most effectively cut the shapes from the dough in front of him. We ended up with an impressive batch and I am heartily assured by my trustworthy taste-testers that they more than fit the brief and hit the mark!

Early arrivals

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efcniToday, November 17th, is World Prematurity Day. A day that acknowledges the early arrival of 15 million babies across the world every year, a statistic that increases annually. Pre-term births are defined as “babies born alive before 37 weeks of pregnancy are completed”, but…

What do you think of when you think of a premature baby?

You might recall images of micro-preemies, those babies born so early and so small that they can be cradled in the palm of their parents’ hands. You might think of babies covered with tubes and wires, enclosed in incubators or even tucked into supermarket sandwich bags to help keep them warm enough to survive. You might know of the risks associated with an early arrival and how hard the doctors, nurses and parents fight, with every inch of their being, to get those babies through another day and another long night. You may even have survived the weeks of hoping to get “just one more” week through your pregnancy, knowing that every single hour counts.

The thing is that preemie babies come in all shapes and sizes; the reasons for their early arrival are many and varied; and every family has a similar, but also hugely different story to tell. Each parent and child has their own individual challenges to face and yet premature birth is a common bond that links them all. Let me introduce you to 3 special preemies, each with a unique set of circumstances and a shared experience marking their arrival  :

20131118_191134Of course, you’ve already met the first one: G just crept into the premature category, arriving at 36+6 nearly 12 years ago and weighing an extremely respectable 8lbs. Her delivery was the result of fears about my T1D and the signs that my placenta was beginning to fail, so the doctors made the decision to deliver her to ensure she had the best start in life. Even though she had an initial problem with plummeting blood sugars, G’s stay in SCBU (Special Care Baby Unit) was short at just 3 days and thanks to the wonderfully supportive nurses on the High Dependency ward who looked after us both, Mike, G and I were able to come home a week after she was born and spent our first family Christmas together at home.

M was even more impatient to arrive than his big sister, although his birth weight of 5lbs 12.5oz at 33+1 gestation was equally impressive. M spent his first few days on NICU (Neonatal Intensive Care Unit), although there were times we felt something of a fraud, especially compared to the tiny 26-weeker 2 cribs along, who had been born at exactly 5lbs less than him. We had been warned from the moment I was first admitted at 26 weeks pregnant that once he arrived, M would almost inevitably need to stay in hospital until he reached his due date. It is of great credit to the dedicated doctors and nurses who looked after him that we were, in fact, able to bring him home after just 3.5 weeks and in perfect time for Mothers’ Day.

10329684_10152507367497848_7913075952615166607_oAnd this tiny, but beautiful fighter is B, the second son of our close friends and M’s godparents, L and C. Due to fetal distress resulting from pre-eclampsia, B was born at 27+2, weighing just 1lb 9oz and has had a very different battle so far than either G or M. He had suspected NEC (Necrotising Enterocolitis) in hospital and for a week things were very touch and go. Despite this rocky beginning, B is an incredible battler and even though he came home on oxygen after a long 98 days in hospital, 5 weeks later he had been successfully weaned off that too. 18 months on, he is a happy, loving little boy, who may be on the small side for his age, but is otherwise doing well and I know that his parents, just like us, will be forever grateful to those medics who have helped B fight and win.

image_for_happy_world_prematurity_day_5715493946These 3 precious bundles may not have had the easiest start in their lives, but we are lucky that they have each survived and become an irreplaceable part of our families. With a national health service that is in crisis, the neonatal units where G, M and B and thousands like them are cared for on a daily basis are seriously overstretched and understaffed. These children need an incredible level of specialist care to help them make it through those critical first few days and weeks of life and the doctors and nurses who give it are simply amazing as they offer not just medical care to the babies, but emotional support to the whole family. That is a gift that cannot be easily replaced and we know that we were extremely fortunate to be able to receive it.

Children In Need 2015

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Along with the rain, wind and grey skies, November also brings with it the star-studded evening of light entertainment that is BBC’s Children in Need. Last year they launched the theme of “Be a Hero” for the event and my pair decided to dress as their personal heroes of Princess Leia and M’s gastro consultant at GOSH. This year, the dressing up part was a little easier to achieve – G headed off to school in her own wardrobe selection and M wore his “Super Tubie” top as we really couldn’t think of any better superhero for him to represent. You might think that this meant I escaped lightly for this year’s celebrations, but for those of you who know me, or follow me on FB, you will be well aware that my youngest actually had very different ideas about how we should spend the night before the big day itself, and what a long night it turned out to be!

His school decided to hold a “Great Children-in-Need Bake-off” competition as part of their fundraising efforts and naturally M was keen to take part. His first step was to decide what he wanted his cake to look like and eventually settled on cupcakes rather than one big cake as they would be easier to sell as part of the school cake sale after the competition was judged. Instead of decorating a dozen individual cupcakes, 20151111_195743M wanted to use them to create Pudsey Bear’s face as best he could. Design done, Wednesday evening saw M whipping up the cake batter with a little supervision from me and the resulting 24 perfectly baked M-friendly cupcakes were left to cool overnight before he tackled the big job of the icing.

One evening to ice to perfection might sound like more than enough time, but when you take into consideration the after-school archery club requiring late pick-up, the long-awaited ‘flu vaccination appointment, the unavoidable homework and the much-needed dinner, you’ll begin to understand why we couldn’t get started until close to 6.30pm. Of course, having baked cakes that he could eat, M was keen to ice with safe icing too, so my first job was to help him make enough coconut oil icing, tinted a rather fetching Pudsey Bear yellow, to cover them all. 20151112_192831We had already made a simple cardboard frame in the shape of Pudsey’s head to hold the cupcakes securely and,having fitted 10 cupcakes neatly into place, M got started on the icing.

It was his first attempt with an icing bag and I have to say I was impressed. M handled the bag and nozzle like a pro and did what I’d consider to be a really good job for his very first go. Watching him I could see how much his motor skills have improved since he was first diagnosed with dyspraxia and he actually made a relatively fiddly task seem remarkably easy. Yellow icing piped, next came the task of rolling out and shaping the other colours to make Pudsey’s spotted bandage and facial features. He tweaked and adjusted until he was finally satisfied with the end result and I have to say it was a job well done. Whilst he couldn’t quite eat all of the cakes, he could eat those covered just with the yellow icing – the ears! – and for the first time in a long time, M knew he’d be able to buy a cake at the school cake sale!

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Now, for most people that would be a great place to stop; but oh no, not in our slightly mad household. Whilst we’d been browsing cookery books and the internet for ideas for his final cake design, M had spotted some Pudsey Bear cake pops and was keen to see if we could make some of those in a M-friendly version too. Cue some hurried reading on my part accompanied by much scratching of my head as I tried to work out a recipe that didn’t involve chocolate in some shape or form. I couldn’t find a single chocolate-free cake pop recipe, so did the next best thing and came up with my own.

20151112_204555I crumbled 8 cupcakes into a bowl and was delighted to see that the grated apple and pear in the cake mix gave enough moisture to form balls. M cut up some drinking straws as I carefully moulded our cake balls and stuck them to the sticks to create the lollipop shape. My full recipe is here, but let’s just say it took multiple moves between table and freezer as well as some much-needed help from all family members on hand to achieve the final look. The ones M decorated for school were not safe for him to try as we ended up using fondant icing, but we did try a few attempts with the coconut oil icing and I reckon with a few more tries, we might have those sussed.

20151113_082414It turned out to be a later night than planned, but M ended up with 2 entries to the school competition he could be proud of and was delighted that nearly all of his cakes sold at the fundraiser on Friday.

Teal Pumpkin Project™ 2015

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My first real experience of Halloween came during my time as a student at Ottawa University back in the 1990s, when my Canadian friends took pity on a poor uninitiated Brit and introduced me to what is truly an unmissable event on the North American calendar. Every shop has a vast array of costumes to choose from, porches are adorned with carved pumpkins galore, houses are bedecked in lights and decorations to rival those put up for Christmas and entire neighbourhoods take to the streets on the night itself, pillowcases in hand, to offer the traditional “..trick-or-treat..” to the eager participants. Likewise, G and M have fond memories of their own P1000386Canadian Halloween experiences with cousins and friends and their outfits are still hanging up in M’s costume wardrobe as a permanent memento. It was, understandably, a big part of Mike’s childhood, but is not an occasion I ever remember marking in my own upbringing and at home, here in the UK, I can’t quite reconcile myself to the idea of sending my children out in their ghoulish fancy dress to knock on random houses in our village to ask for treats, when, for the other 364 days of the year, I’m drilling into them the mantra to not accept sweets from strangers. Whilst we might not be avid Halloween fans in our household, I know it is a custom that is becoming more and more popular around the country.

Of course, for children with food allergies, trick-or-treating takes on a whole new meaning as frighteningly they risk their health by collecting sweets that could unwittingly trigger an allergic reaction. This year in particular, I am glad that my children have no expectations of going out on Halloween as with M’s slim pickings when it comes to safe foods, I would have to take away every single sweet he was given and swap it for a M-friendly alternative; and would have to do exactly the same to protect G from her allergies too. However, thanks to Food Allergy Research & Education (FARE) in the USA, a relatively new campaign helps raise awareness of food allergies during Halloween season, seeks to ease parental concerns, promotes inclusion of all trick-or-treaters and asks households to pledge to participate in the Teal Pumpkin Project™.teal-pumpkin-project-allergy-friendly-Halloween

This national campaign was launched in 2014 and saw households from 50 states and 7 countries get involved in the Teal Pumpkin Project™ and FARE is hoping that this year an even bigger movement will happen with a target 100,000 households pledging to take part. The idea is simple and incredibly effective: if a household is prepared to provide non-food treats for any trick-or-treaters likely to call, they are asked to paint a pumpkin teal and place it in pride of place in front of their home. Their website also has a free printable sign to indicate there are non-food treats available, which can be downloaded here. Even though this initiative was originally launched in the USA, the project has gone viral through the various social media platforms and allergy parents around the globe are making the pledge for this October 31st.

So, what can you do to be involved? It’s easy, it really, really is and if you’re planning to actively celebrate Halloween this year, I would ask you to please consider taking part:PTPP-2

  • Don’t just buy sweets to hand out from your door, but take a little time to consider those who can’t enjoy these treats and buy some non-food treats for them too. The treats don’t have to be expensive: trading cards, stickers, glowsticks or stationery will all be gratefully received, so visit your local pound or dollar store and see what your money can buy
  • Once you have your non-food treats, paint your pumpkin teal and put it out where it can be seen. There will be many who won’t understand the significance, but trust me when I say almost every allergy parent will know and will appreciate your effort
  • Visit the FARE website and print out one of their posters or signs to put up in your windows to make it clear you’re taking part in this year’s Teal Pumpkin Project™
  • Take the pledge via the FARE website and encourage your family and friends to do the same

And remember, your involvement could make a big difference and ultimately save the life of a child like M. 

More than a smile

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It all started with a simple compliment that was probably given without too much thought, almost a throw-away comment, but the words, planned or not, had a profound effect months ago and still do. I had walked M and G to school after a particularly difficult night with M,  following on from a couple of really tough days and I was tired and emotional as I left the school grounds. Passing their Head at the gates, I gave a small smile, a nod of my head and a quick reply to his question about how M was feeling. His next words stopped me in my tracks and even now continue to resonate in my memory, especially when things are feeling a little more challenging or tiring than normal:

“I just wanted to say that I admire your constant smile and upbeat attitude about everything. Your positivity is reflected in the way both children deal with whatever’s thrown at them in the classroom and in life.”

My garbled response was a variation of my stock answer:

“What else can I do, but smile? If I didn’t I might end up crying, but that won’t help M or G or me; and it won’t change the way things are…” (I shrugged) “…besides, if I don’t smile and get on with things, who else will? That’s my job as Mum.”

“That might be true. but I know a lot of people who wouldn’t be able to smile about it. They’d feel hard done by and resentful of the hand they’ve been dealt, their response would be focussed on complaining – that simply isn’t you or the children.”

I don’t know if the exhaustion of a failed food trial and a bad night’s sleep had made me more sensitive to the world around me, but his words had an impact that I felt resonating deep in my soul and gave a lightness to my step that certainly hadn’t been there 10 minutes earlier. All the way home, with unexpected tears in my eyes, 11987081_10153905230214523_3086822525667980358_nI pondered what he had said to me. After all, am I really that unusual in my response? I don’t feel particularly unique in my attitude and, believe me, I can certainly have a moan with the best of them. I suddenly had reason to reflect on how I present our situation to the outside world and why I smile, even at the most difficult of times.

I smile because, despite everything – the difficult pregnancy, the premature birth, the EGID diagnosis and the decision to tube-feed – I have a lot to celebrate. I have 2 amazing, beautiful, cheeky, intelligent children, my children with super powers, who astound me regularly with their unexpected insights into the world and make me smile. Whilst I might not be able to say truthfully that they are both “happy and healthy”, the wish of every new parent as they await the arrival of their latest addition, they are growing into young people I am proud to say are mine and fascinating individuals in their own right. They might have their struggles to manage, but they are here with me and every day with them is one more opportunity to cuddle, to kiss and to share their lives. As a family we have a lot of fun and there’s always a reason to have a giggle, laugh out loud and just smile together, even at the darkest moments.

Of course the truth is that, in many ways, my smile is also much, much more than a reflection of the joy I feel when spending time with my nearest and dearest. It is also my most effective disguise. If you look hard enough, there will be times when you might notice that the smile doesn’t quite reach my eyes or that my smile is perhaps a little bittersweet. Those are the days when it’s been hard to fight the urge to crawl back under the covers and pull the duvet over my head. The days when getting up, getting dressed and just being is a massive success.12049331_865332913546071_5149015929277272601_n The days when it’s been hard work to put one foot in front of the other and not just get started, but keep going too.

And I’m not alone. Out there in the real world are a huge number of parents who are facing the same struggles, fighting similar battles and often surviving a reality that is far harder than the one we face each day. I have been privileged to meet and get to know some of these superhero parents through our shared experiences and I see that same positive and undeniably brave approach to life reflected in each and every one of them. They are often the parents who just a tiny bit more weary at the school gates, a little more contemplative at the end of each day and a lot more determined to make the most of every moment they have because they know just how precious those minutes are. They will be the ones who will shrug off your questions about their well-being and turn the focus firmly back to you and yours. Not because they don’t want to answer, but because they know that if their emotional floodgates are opened, it will cause a tidal wave that will engulf them and make keeping their heads above water just a smidgen harder to do. And they will be the parents that tell you they don’t consider themselves particularly special or outstanding or unique because this is their life, they know they can’t change it or their children and nor would they want to. M might end up being the cause of many more grey hairs than I’m ever going to admit to, but I wouldn’t have him any other way; he wouldn’t be him any other way; and those parents’ love for their children transcends the unexpected difficulties they’ve been presented with.

I want to finish with a beautiful thought that a friend shared on FB when we were reflecting on this thought-provoking blog post and our own life experiences as special needs parents:

“That’s the thing…we weren’t given these special children because we are special, they make us that way with how amazing they are.”

superhero

Fast food – home-made style!

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We are generally not a fast-food eating family, which, given the array of allergies we’ve had to deal with over the years, is probably a good thing. It’s not something we’ve noticed we’re missing out on and I doubt we’d ever be burger joint regulars even without the allergies, but all that being said, there are definitely times when being able to pick up a burger and chips or to grab fish and chips from the chippie would make feeding the family one less headache to deal with at the end of a busy day. I don’t think the children have ever really felt like they’re deprived in this area, especially as there were occasions before allergies became a big deal or we’d ever even heard of EGID that we would treat them whilst on holiday; GcsqwFsrRVGMfVc18IAf_imagebut there have been a couple of events recently where M has really struggled with not being able to eat on the go like so much of the rest of the world.

The first was back in July, he went to a friend’s paint-balling birthday party, which was followed by lunch and birthday cake at the local McDonald’s. M was brilliant. He was keen to join in and spend the time with all his friends and asked me to take along some safe food for his lunch. He sat with them whilst they enjoyed their Happy Meals and asked his friend’s Dad if he could have a small portion of fries to smell at the same time. This may sound strange and it’s most definitely heartbreaking to see, but is a coping mechanism he picked up from a couple of the amazing children we met during his GOSH stay last year. It is widely reported that if you lose one of your senses, the others become more acute to replace it and it is this theory that has been put into practice here. M may not be able to eat many of his favourite foods any more, but he can still garner great satisfaction from enjoying their distinctive smells instead. When you consider that your sense of taste is hugely influenced by your sense of smell, after all we all know how bland food can seem when we’re struggling with a heavy head cold, then I guess that it’s no wonder that M finds such enjoyment from smelling what he can’t eat.

With the party behind us, the issue of fast food didn’t raise its head again until just a few weeks ago following a family evening out at a local art exhibition. I had managed to feed G and M before we headed out the door, but Mike and I, no strangers to late night meals, decided that the timing was such that we could only grab something on our way back home. We stopped to quickly pick up burgers and almost instantly both children went into minor melt-downs. I knew that a lot of their complaints were the result of the late night and a desperate need to get to bed and sympathised with their frustrations at not being able to eat something, anything “normal” for a change. I put my thinking cap on and determined to create a meal that could somehow replace the humble burger in our household and give the children the taste sensation they were craving. 20150925_190329I remembered that a couple of summers ago, I had created a fantastically tasty lamb and mint burger recipe and I wondered if I could take that basic recipe and tweak it to meet M’s new dietary needs.

The great news is that I absolutely could. We buy our fresh meat, fruit and vegetables from a local co-operative and one of the ingredients I had spotted before was minced chicken. Adding a mix of seasonings and herbs as well as a generous helping of golden syrup, I prepared some great tasting chicken burgers. I whipped up a batch of rice flour pancakes to replace the bread roll for M, though we’ve decided that my flatbreads would work equally well. They were declared an almost instant success by both M and G, who have asked for them on more than one occasion since. Even better, I discovered that I could use the same recipe to create mini meatballs, which M enjoyed with rice pasta drizzled with a little rapeseed oil, some diced cucumber and a handful of additional herbs. So, one simple recipe led to 2 great new meals for my now slightly-less-moody children – a job well done!

The Start of a New School Year

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In barely the blink of an eye, the summer holidays have disappeared amidst a blur of activities, work and holidays and as we say hello to October and the occasional pumpkin spice latte, we’ve already put the first month of the new school year behind us. This year September has been a little different to most with G moving up to her secondary school and M heading into Year 5 and all the new responsibilities that have accompanied both those events. It’s been a month of mixed emotions as the realisation that my babies are no longer that has hit. They’re growing up fast and whilst it’s been wonderful to see them stepping out with a new-found confidence, there’s been the inevitable tug on my heartstrings as I’ve realised that we’ve moved on to the next stage of parenting, especially when it comes to our little Miss.10865938_887210898036761_1768009436261476122_o

For G, she seems to has quite literally grown up over the summer holidays and now stands a good 2 inches or so taller than her closest friend, whilst developing a new sense of independence too. Every morning I drop her at the local corner shop, where she meets up with a couple of friends for the walk to school. They leave laughing and chatting and seem to pick up various classmates and friends along the way. She’s loving all that her secondary school has to offer, even the drip-feed of homework on a regular basis and is fast learning the importance of being organised and keeping track of her things when there’s no peg or drawer in which to abandon her belongings. Every afternoon she meets M and me at our agreed meeting place, strategically positioned between the 2 schools and is keen to find out how M’s day has been as well as sharing parts of her own.

9781408847558And every evening, once she’s tackled her homework and played outside with M, G spends time helping prepare her packed lunch for the next day and chats away with either Mike or me in the kitchen, giving us precious insights into how things are going as we prepare M’s feed or dinner or sometimes both. Some evenings she’s tired and emotional and a little worn down by the events and demands of the day, but on others she’s buzzing with excitement about what she has learned and the things she has done. I’m so proud that she’s choosing to tackle some of the extended assignments she’s been given in class and her latest effort, to write about why she’d like to have lunch with author, Huw Powell, reaped a much-deserved reward at the start of the week when she and 5 other pupils were selected to actually have lunch with the author himself. It’s wonderful to see her blossom so much in her new environment and I can’t wait to see what the year ahead has in store for her.

M has similarly settled well into his new class and is enjoying being back at school, although he’s not such a fan of the increased homework load that Year 5 has brought with it. He struggled on his first day back, sorely missing G’s reassuring presence at the Junior school with him, but he has soon got used to the new reality and looks forward to meeting up with her every day after school. 9781426755514Despite the hopes and original plans of our gastro team at GOSH, M’s NG-tube is still in place and seems likely to be so for the foreseeable future. His friends continue to take it fully in their stride and are happy to help him remember to bring his feeding pump home at the end of each day, something he still struggles to do even after 9 months of having it in place. We’re not 100% sure of all the challenges that this next school year will bring for M in terms of his health, but we know without doubt that there will be some and are glad to still have our wonderful school and staff supporting him each step of the way.

Merlin’s Magic Wand

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Most of you will know the company Merlin Entertainments, who own and run attractions around the UK such as Alton Towers, the London Eye, Warwick Castle and Madame Tussauds, to name but a few; but how many are aware of their linked charity, Merlin’s Magic Wand? It’s certainly not an organisation I’d ever heard of and knew nothing about until the start of 2015. This charitable organisation was set up in 2008 by Merlin Entertainments to “…deliver magical experiences to seriously ill, disabled and disadvantaged children across the world…” and focus their work in 2 main areas:

  • Magical Days Out at Merlin attractions – over 170, 000 children and their families have been able to enjoy a memorable day out through the provision of entrance tickets and, where necessary, travel grants
  • Taking the Magic to the children – recognising that some children are unable to visit due to the nature of their illnesses or disabilities, Merlin has provided areas such as a “Fantastical Castle play area” in the CHASE Hospice, Guildford and a “Legoland play area” at the Kolding Sygehus Children’s Hospital in Billund, Denmark.

At the start of this year, not long after we’d arrived back home following M’s stay in GOSH for his NG-tube and elemental diet, I heard about Merlin’s Magic Wand and decided to investigate a little further. I wasn’t confident whether M would even be eligible for tickets or not, but thanks to their incredibly informative and easy to navigate website, 20150831_073635I decided to give it a go, working on the principle of nothing ventured, nothing gained. Both children are massive fans of Legoland Windsor and had been clamouring for a visit this year, so I selected that as our number 1 choice and, without saying a word to either of them, sent back the form and sat back to wait and see.

Within a couple of weeks of submitting my application form on-line, I had an e-mail to tell me we had been successful and that 4 entrance tickets would soon be winging their way to me. Unfortunately, a slight delay in their arrival meant we couldn’t use them for our Star Wars trip on May 4th, but the problems were soon resolved, the tickets arrived and I pinned them to our kitchen noticeboard, waiting for the right time to put them to good use. A busy summer has meant that finding that right time to go proved more challenging than we expected and we finally settled on the August bank holiday Monday as something of a “last hurrah” for our summer holidays and before G started her new venture of secondary school.

We set off early on that Monday morning, driving through the pouring rain, confident that, if nothing else, the park would not be too busy, or, at least, not as busy as it might have been if there’d been glorious sunshine. Our travels to Florida last year alerted us to the existence of ride access passes and we were delighted that the same exist at Legoland Windsor. Armed with a letter from our GP confirming the reasons we needed this pass, we headed to guest services as soon as we entered the park. 20150831_114557This is a “benefit” that has obviously been subject to some abuse over the years and Legoland Windsor has stringent checks in place to ensure that only those who genuinely need this assistance receive it.

Our day there was as fantastic as ever and we enjoyed all of our favourite rides (some of them twice!) as well as trying out the brand new Mia’s Riding Adventure, one that G was desperate to go on. This isn’t one for the faint-hearted and there was a slightly panicked moment when we discovered that M’s body-weight wasn’t quite enough to keep the seat back in a comfortable, but secure position for him ride. With some excellent help from the staff manning the ride, we managed to get M settled in a position that allowed him to breathe before the ride started and the screams from my excited duo began. 20150831_100610Mike watched from the sidelines as he and spinning rides really don’t get along and waved merrily to us, slightly misconstruing my attempts to flag a staff member down to help as an unusual display of my own excitement about the ride.

Disappointingly we are no longer able to eat on-site as we’ve found that the cross-contamination is too much for M’s sensitive digestive system to cope with and instead we enjoyed a rather soggy packed lunch, whilst watching both shows – the Pirates of Skeleton Bay and Lego Friends to the Rescue. The children were also able to be part of the audience volunteers at the start of each show, which they loved and which has become an integral part of any day we spend at Legoland Windsor. All in all, we had an amazing day out thanks to the generosity of Merlin’s Magic Wand. The charity depends on donations to help make these tickets available to those children who benefit from them and if you want to find out more about how you can help or show support, please visit their website:

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Not quite Mickey-shaped…!

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20140818_143459Around about the same time that I started fondly reminiscing about last year’s holiday to Florida, my FB timeline decided to prompt my recollections with this photo of what turned out to be just the tip of the iceberg when it came to the vast array of fantastic M- and G-friendly food in Disney. These Mickey waffles were a huge part of what made our trip so successful and are one of M’s favourite memories about his first visit to “the most magical place on earth“. In fact, they were so popular that they have gained the unenviable status of one of the top 10 foods M is desperate to enjoy once he has a few more foods back in his diet. With so many of the key ingredients for your traditional waffle firmly in the “unsafe” camp, I turned my mind to what the basic ingredients of a successful waffle were and whether I could replace them and produce a waffle that might satisfy M’s longing.

I found a great recipe for egg-free waffles and, confident that I could make a replacement that would at very least look good, even if the taste wasn’t quite all it should be, I insisted on a detour during a family day out to buy my very first waffle-maker. I had previously done some research on the various options out there and once we were in-store, 20150809_184330M helped me pick which one he thought would do the best job – a combined waffle-maker, sandwich-toaster and grill! Shopping done and the day’s activities completed, we headed home and I claimed the kitchen as a child-free zone until my experimenting was done.

The first recipe I adapted produced some amazing waffles and I just wish I had a photo that captured the pure delight on M’s face when he first caught sight of his plate full of M-friendly waffles. Needless to say, he was rendered speechless – something that rarely happens as those of you who know us well will know – and he flung his arms around me, squeezing tight as he whispered “Thank you Mummy, you’re the very best Mummy in the world“. Both children declared them an instant hit and the speed at which those first 4 waffles disappeared from their plates would confirm that to be the case. Mike and I shared a fifth one between us and agreed that as delicious as they were, the rice flour had created a granular taste to the waffles, a problem that I have experienced before when baking with this tricky ingredient. 20150809_185211I have found that making a wetter mix has been key in producing a less granular cake, but couldn’t quite see how to make this work with the thicker waffle batter and the limiting factor of only a handful of safe ingredients.

Not quite 100% satisfied with my first attempt and responding to the following day’s request for “..more waffles please!.” from M and G, this time I searched for a recipe for apple waffles and adapted it to suit our allergy needs. I used some apple purée to not only flavour the waffles, but also to replace the egg and add more liquid to the batter without diluting it too much. This batch cooked as well as the first and proved to be an equal success with my discerning duo. Mike also acted as a taste-tester and reported that the granular texture was considerably reduced with the addition of the apple, though it hasn’t disappeared completely. Whilst I will continue to strive for even better rice flour waffles, for now I’m more than happy to have found a way to replicate those Mickey waffles, even if they’re not quite Mickey-shaped!

Countdown to Cornwall

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This time last year I had holiday-planned to within an inch of my life and had experienced amazing support from the folks at Virgin Atlantic. We had arrived at Disneyworld Florida, were impressed by the positive approach to M’s restricted diet shown by all and were loving our days in the sun. It really was a trip of a lifetime and we’ve all been reminiscing a lot about where we were and what we were doing this time last year.

Our plans this year have been much less grandiose and much closer to home. When we first started thinking about our summer holiday plans back in November, all we knew was that M was going to be going elemental sometime soon and would have a NG-tube in place. We didn’t know if it would still be there by the time this summer rolled around and had no idea what he’d be able to eat or how we’d all be coping with the change. We toyed with the idea of a holiday in Portugal, a favourite destination of us all, but just weren’t sure how confident we would be if we needed to travel abroad with a tube in place.  20150812_172857Of course, with the benefit of hindsight and nearly 9 months experience, I am sure we would have coped just fine, but the uncertainty of all we’d be dealing with meant that instead we opted for staying in the UK and so we are now on our countdown to Cornwall.

Our front hallway currently resembles a storage facility as I pull out ready for packing, not just clothes and beach essentials, but safe food supplies for both G and M and, of course, everything we’ll need for M’s tube feeds. We have each chosen a day-trip we’d like to do whilst we’re there as well as researching the beaches surrounding Fowey, our base for the week. Mike has spent time looking at various “wet-weather” options as there’s no guarantee of sun in the UK, even in August, and we have been able to pencil in a day with G’s godmother, Godmama C and her lovely family as they will be holidaying there too. We might be staying in a self-catering apartment, but we’re also hoping to venture out to eat and my time has been spent trawling the internet looking for allergy-friendly restaurants and emailing to find out whether they will be able to accommodate M’s current food needs. cornwall-mapThe great news is that a couple have already replied to tell me that they are up for the challenge and I can’t wait to try them out and share our reviews of just how well they did for both M and G with you all. Even better, thanks to timely posts from fellow bloggers such as The Intolerant Gourmand and dedicated websites like Can I eat there?, I’ve been given some great top tips for making this a holiday to remember.