Category Archives: Special Needs Parenting

Happy 11th!

Somehow it doesn’t seem real that another year has passed and we’re marking a certain young gentleman’s 11th birthday. When my challenging pregnancy resulted in a premature birth, I had no idea that this Japanese proverb would become the very mantra of our lives as a family of 4. Today we’re celebrating 11 years filled with love, laughter and the continued determination by our youngest to get back up each and every time life knocks him down.

Happy 11th birthday M, may your day be filled with everything you want and so much more!

 

You know you’re an Allergy Mum when…

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I often flick through those “You know you’re a…” memes and have a quiet giggle to myself. I love the funny images that reflect the reality of a certain situation and I’m happy to admit that I do have a sense of humour about the jokes that poke gentle fun at the world’s response to the seemingly meteoric rise in food allergies in the past few years. In my opinion, and I willingly accept there will be many who don’t agree with me, life’s too short to not be able to laugh a little and find humour in what can be incredibly challenging situations. I know how difficult life with allergies can be and that ability to smile in the face of adversity is often what gets me through the hardest of times.

The truth is that when you’re an allergy parent you never really get the day off, which is why I found myself having to write this post in the midst of relaying tales of our recent trip to New York. It was a holiday to celebrate my milestone birthday and yet, just as I did when we had our short trip to Italy last year, I found myself snapping photos right, left and centre img_3430whenever I came across any food or drink that would be suitable for either of the children. The thing is that for once in my life I wasn’t actively looking for safe food options, but the discovery of that first gluten-free sandwich triggered a level of excitement that would be completely incomprehensible to anyone other than those walking the very same journey that we do. And no sooner had I discovered that first little gem, than I started looking everywhere to see just how well G and M would be catered for should we find ourselves in the Big Apple in the next few years.

Our trip to see the most well-known lady of the USA was also the site of this unexpected windfall in meeting dietary requirements. Having climbed our way to the top of the Statue of Liberty, we headed on to Ellis Island, where we decided to stop for lunch before exploring everything on offer in this former immigration inspection station. We had opted for a burger each as it was a cold and wintry February day and whilst Mike was placing our order at the counter, I took to the fridges to pick out our drinks. img_1449There, nestling amongst the other cold food options available, was this amazing gluten-free ham and swiss cheese roll and I was so impressed that I just had to take a snap. I’ve commented so many times on how difficult it can be to locate the gluten-free offering in cafes and coffee shops in the UK, so to discover this one so prominently on display and clearly labelled was just fantastic. Obviously, I really can’t comment on whether it tasted good or not, though I can assure you that the burgers Mike and I had were delicious, but to even have the option so readily available was a real breath of fresh air.

From that point on, my eagerness to see what other allergy-friendly offerings were available was back to its normal level and whilst I didn’t actively seek out restaurants that could serve freefrom alternatives, I kept my Allergy Mum eagle eyes on red alert to see what I could spot on our travels around this vibrant city. Our quick stop at Eataly to find a drink and small snack after a long afternoon at the 9/11 Memorial museum revealed some sheep’s milk and cheese for those looking for dairy-free alternatives, but disappointingly we couldn’t spot any of the gluten-free goodies we had unearthed on our Italian trip last year.

I didn’t spot many allergy-friendly menu items as we ate out in several of the many restaurants on offer, but we were delighted to spot a couple of gluten-free options at what was, without a doubt, my favourite restaurant of the trip. The fantastic Ellen’s Stardust Diner is a 50s themed diner that combines classic all-American dishes with amazing live entertainment. As you sit to enjoy your meal, you are serenaded by your talented waiter or waitress and their fellow servers. The staff members are all looking to break onto Broadway whilst working at the diner, which understands not only their need to supplement their income and take further performance classes, but also allows them to accept those last-minute audition opportunities whenever they appear. The food is good, but it’s the staff who really make this a dining experience like no other. Discovering a couple of gluten-free meals was a real treat, though I’m not sure they could really cater for the more complicated needs of a certain young member of our household.

However, our best finds came on a very wet, grey and miserable Monday afternoon as we trudged across the city towards the Intrepid Sea, Air & Space Museum. We needed to grab a light lunch before we reached our final destination and, as Mike had been hankering for a proper bagel New York-style, stopped at 2 unassuming locations to find what we had been looking for. As well as eventually finding a great deli serving some delicious lunch foods, we also discovered a veritable Aladdin’s cave of freefrom goodies. From the unbelievable number of allergy-friendly cereals, bread, frozen foods and milks on sale at the impressively named Food Emporium on West 43rd Street and the added delights of camel milk and coconut or almond milk ice cream at Sunac Natural Market on West 42nd Street, there was enough to satisfy the cravings of even the pickiest of allergy tourists. There may not have been a huge variety of options for M, but we did find some great and different types of rice for him and I know G would have been hard pressed to choose from the wide selection of gluten- and dairy-free foods that we found between these 2 great spots.

And so, in the tradition of all those Allergy parent memes that are out there….

You know you’re an Allergy Mum when your holiday photo album looks like this!

 

I scream…

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Ice cream: that perennial favourite of children everywhere. What image does ice cream conjure up for you? Summer sun and beach holidays? Bowls of jelly and ice cream at birthday parties? The necessary accompaniment to just about every dessert you can think of, from apple crumble to treacle tart and, if you’re British, the 99 – vanilla soft-whip ice cream in a cone and topped with a chocolate flake. Mmm, my mouth is watering just thinking of it.

For M, ice cream has been the one pudding he has missed most in the 2 years since he went elemental and it has taken a painfully long time to find and adapt a recipe to make the perfect M-friendly alternative to this popular frozen treat. I have long had an ice-cream maker as part of my essential bits of kitchen equipment as once M had gone MEWS-free, I quickly realised that the simplest way to find a dairy- and soya-free ice cream was to make my own. img_13421M and I are also big fans of sorbet and we have enjoyed some deliciously indulgent home-made lemon, orange or raspberry sorbet over the years. I even attempted a wine sorbet, thanks to the recipe book that came with my machine, but it was a disappointing disaster that really couldn’t be saved.

Over the last couple of years, I have tried an apple sorbet for him, but M was less than impressed and I struggled to get the consistency right as the sorbet failed to “set”. Since the summer, I have been determined to find a way to successfully make a safe vanilla ice cream and finally found a simple, vegan recipe with just a handful of ingredients that I knew I could easily replace. The discovery of a palatable rice cream last year was the key to my success and I shut myself into the kitchen in the lead up to Christmas in order to perfect my recipe in time for the festive period.

I struck gold in that very first attempt and I was delighted with just how close to the “real” thing this version came. M and G were absolutely thrilled with that first bowl of vanilla ice cream and it’s been a good alternative for Mike too, who is unable to eat a bowlful of dairy ice cream without suffering the consequences. I love being able to whip up this easy dessert in less than an hour and know that it will continue to be a favourite for a long time to come!16830691_10154166034751123_1184328170820370385_n

*Interesting piece of trivia – the song “I scream, You scream, We all scream for ice cream” was a popular song first recorded in 1927 as a novelty song, before becoming a jazz standard and part of popular culture!

Impractical Jokers – Birmingham 2017

The last month or so has been filled with an unusual number of opportunities for Mike and me to take a little time off from our jam-packed lives at home and have some much-needed time to relax, rejuvenate and re-find ourselves as a couple. We’ve been fortunate that, just as she did last June when we enjoyed my surprise holiday win to Italy, my Mum was willing to take charge of G and M for the duration and we’ve been celebrating our 40th birthdays in style. Our first treat involved a road trip to Birmingham, an overnight stay near the Barclaycard Arena (previously the National Indoor Arena) and an evening spent laughing, courtesy of the tickets I had bought for Mike as part of his 40th birthday present.

img_13471Just over a year ago we discovered the American hit comedy show, Impractical Jokers and have spent many hours curled up in front of the TV, often with the children added to the mix too, giggling and guffawing at the escapades we’ve watched unfold in front of our eyes. For those of you who have never heard of the Impractical Jokers, this hidden camera show follows 4 childhood friends from Staten Island, Sal, Joe, Murr and Q, as they play a series of practical jokes on each other and the unsuspecting general public. In a hyped-up version of “Truth or Dare”, they challenge each other to complete a string of ridiculous tasks, knowing that failure to complete or achieve the goal will result in the biggest loser of that episode having to undergo a punishment at the hands of their friends.

The Jokers usually do not know the details of the pranks until the moment they have to do them and are often pushed to say and do things that are well beyond most people’s normal comfort zones. From saying outrageous comments when serving customers at one of the many stores, fast food joints or cafes featured from New York, to having to convince strangers that they have met before in the most unbelievable set of circumstances, the pranks nearly always have us all laughing out loud. I’d be hard-pushed to say which part of each show we most enjoy, but the final punishments are almost always as funny as the pranks themselves and go from the sublime to the ridiculous. img_13531In many ways, it’s seeing the response that adds to the humour of the situation. My Mum freely admits that she can’t see what makes us laugh so much and perhaps it’s true you require a certain quirky sense of humour to enjoy the half-hour episodes.

Having missed out on tickets for their first UK tour in February 2016, I was determined to get some for January 2017 and was delighted when I managed to secure 2 great seats at the Birmingham Barclaycard Arena. It took some strategic planning with my Mum – well, I had to check she’d be in the country to look after G and M for the night! – but we got there in the end and I even managed to keep it a secret until the big reveal on Mike’s birthday in October. M was not so impressed with our planned night out, but Mike was as thrilled as I was and the time just flew past until we found ourselves taking an afternoon off from work and bombing down the motorway towards our final destination. We found a great place to stay – City Nites Serviced Apartments – within walking distance of the Arena that included a secure location to park the car and enjoyed a delicious dinner at Thai Edge before the show itself started.

We were hoping for a great night out and weren’t disappointed. The Jokers, also known as The Tenderloins comedy troupe, have been performing stand-up for years and their show was filled with a skillful mix of scripted jokes, some improv and the inevitable reveal of previously unseen clips from their successful TV show. I’ll be honest, a few long days and nights on UK tour had obviously taken their toll on all their voices and a heavy drinking session meant that one member of the group in particular was not as sharp as he usually is on-screen, but my favourites, Sal and Joe, were in fantastic form and made the night for me. Mike loved being at yet another live comedy show, having already enjoyed seeing Josh Widdicombe and Dave Gorman for previous birthday treats. It was a brilliant overnight break from the children and one that we both needed after the medical stresses that had stalked us at the end of last year.c2dvr6txeaan_op

Back to the Judging table

Today Mike and I have enjoyed what feels like a rare day off together. We’re away from work, away from home and away from the constant complexities of parenting 2 children with an interesting selection of food allergies between them. Instead, we have been privileged to spend the day in London as part of the judging panel for the Free From Food Awards 2017 (#FFFA17). You may remember that last year saw my debut in this exciting role and, thanks to the generosity of my Mum in providing some invaluable childcare and the need for a “normal” person in the selected groups of tasters, Mike was able to join me in the experience. It was last year’s involvement that kicked of an exciting year of opportunities for us all: from discovering our very own set of superheroes including the wonderful Ryan of Borough 22 to attending the Awards ceremony with a broken leg; not forgetting the introduction of GalaxyGazer and Marvin to their own readership and my involvement with the Free From Eating Out Awards 2016 – gosh, what a busy year it has been!

Our day started off a little later img_13641than normal with the “Meaty and Fishy Ready Meals” category. I enjoyed some of the new products that I discovered when judging this round last year, though was disappointed to find it difficult to find some of my favourites once the Awards were over. I was looking forward to seeing what new products I would uncover this year, especially seeking out anything suitable for G. Much as I enjoy cooking and usually prepare all our meals from scratch, I love finding those quick alternatives that will make busy evenings just the tiny bit easier. There were some great foods on offer, including a delicious gluten-free quiche from Asda, some highly contentious coronation chicken sausages and a great selection of microwave-able meals. To my delight, I came across 3 dishes that I thought were absolutely amazing and would be more than happy to buy for G. The first were the most delicious Sweet Quebec sausages from Slightly Different Foods. All foods are initially judged blind so that our opinions are not unduly influenced by any preconceived ideas img_13671about any of the suppliers or manufacturers of these products. I was thrilled to discover after the tasting who had made these sausages as we had stumbled across this company at last year’s Allergy and FreeFrom Show and our lengthy and enthusiastic conversation with owners, Sonia and Steve, evidently encouraged them to submit an entry to this year’s Awards. The sausages contain that classic Canadian combination of bacon and maple syrup and are bursting with flavour. I have no doubt that G will absolutely love them and the simplicity of the ingredients makes them a great choice for many with food allergies.

Next was a fantastic Chicken Tikka Masala with rice, which was unexpectedly manufactured by Pure, better known for their range of dairy-free alternatives to normal margarine. I had absolutely no idea that they made other free-from foods and this curry was beautifully fresh with a great selection of vegetables and even some quinoa included in its list of ingredients. Finally was my run-away favourite, a beef casserole with dumplings from Tesco, which is gluten-, dairy- and egg-free. The meat was tender, the gravy rich and the dumplings a surprise bonus on an already superb ready meal. I’m not convinced that G would choose either of these 2 options for an evening meal, but I would be more than happy to serve her both.

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Beating the Blues

Today is Blue Monday, the day predicted to be the gloomiest day of the year due to bad weather, the stark reality of our Christmas over-indulgence now affecting our dwindling bank accounts, the post-Christmas buzz that has completely disappeared from the horizon and our well-meant resolutions that are proving far harder to keep than we ever imagined. There are some New Year resolutions that you know will be difficult to keep beyond the first few days – abstinence springs instantly to mind – and then there are those that will never, could never be a challenge, but rather are an absolute pleasure to complete. Last year gave our family 2 amazing opportunities, experiences that were so life-changing, so extraordinary for both children and so liberating for us all that I knew that one resolution that I would not fail to meet was to write a post to not only recapture what are amongst my most favourite memories of 2016, but to also encourage others to get involved with what is a truly inspirational organisation.

9a78a65173e2885ea3a8c8b9d3ccd1acThanks to the amazing charity, Over The Wall, last year both G and M were able to escape from the reality that is their life at home coping with chronic illness and find a world where nothing could hold them back or stop them from achieving what might have previously seemed to have been impossible. G discovered a group of friends who could understand completely what life can be like when you have a sibling with serious health issues, but who got to know the unique, kind-hearted, gentle-spirited and passionate girl she can be in her own right and not simply as “M’s big sister“. Her confidence grew as she responded to the love, focus and encouragement that was given to her throughout her week away and she found a new and irreplaceable identity as a valuable member of last year’s Purple Girls at the South Siblings camp. Likewise, just a few months later, M was able to experience, for the first time ever, a week away from family, where he got to be as carefree a child as his school-mates are and could try out a whole host of new activities, confident and safe in the knowledge that his medical needs were being well-managed by the volunteer team surrounding him and he just needed to concentrate on having fun. Their time away from home taught them both that there is more to them than EGID and food allergies: Over The Wall truly gave my children wings to help them soar.

So, why write once again about the extraordinary adventure that is Over The Wall? Well, with a New Year comes new opportunities and you don’t have to have a child living with a chronic illness to be able to become involved with this organisation:

  • Application forms are currently open for places on the 2017 camps and be it the Siblings, Health Challenges or Family camp that meets your needs, now is the time to register your interest and find out if you can secure a place. Both children are glad to know that their forms have been completed and sent off, and it’s just a case of waiting to see if they’re back to the camp bubble this year
  • These camps depend heavily on the huge amount of time given to them by their team of dedicated volunteers. If you’re interested in volunteering your time and helping make a difference to young people impacted by health problems, volunteer applications are also now open. The medical team who willingly give their time are unquestionably invaluable, but whatever your skills, know that your presence will undoubtedly make a difference to the children that are there
  • OTW offer these camps free to those families who attend and to be able to keep doing what they do and successfully reach out to even more young people, they need your help in raising funds. As a family we decided to focus our fundraising efforts last year on OTW and will continue to do so for 2017. Thank you so much if you helped us make a difference in 2016. Cake sales, sky-diving, shaving your head or running a marathon – whatever your interest, please consider supporting this charity by raising sponsorship or making a donation

And just in case you needed a reason to support and spread the news about Over The Wall, here’s a few photos that capture the magic that transformed the lives of G and M in unimaginable ways in 2016.

New Year Resolutions

Two weeks into 2017 and, for some, their good intentions may already be beginning to waver as the grey skies, endless rain and post-Christmas blues sap away any enthusiasm that might have existed at that moment of pressure when they were asked by a well-meaning friend or work colleague what their New Year resolutions were. Love them or hate them,newyearsresolution you’ve probably got an opinion of them, even if it’s just that they’re not worth doing as only the very few manage to keep to their chosen goal.

Last year, Mike and I both had resolutions, though of very differing types and whilst I was fully aware of what Mike was planning to do, I set myself a goal that I chose not to share with anyone. Mike’s resolution for 2016 was to extend his previous challenges of giving up alcohol during Lent by trying to be dry every other weekend throughout the year. He sensibly took the approach that there would undoubtedly be occasions when he would want to drink 2 weekends in a row, so was flexible in managing it, sometimes choosing to abstain for 2 weeks before drinking for 2 weeks. It seemed to work well and he was delighted that he reached the end of the year having managed to stick to his resolution for the full 52 weeks.

In comparison, mine was a blog-based goal and one that I was secretly hoping to achieve and would monitor throughout the months to see if I was still on track to succeed. The one thing I love about the blogging platform that I use and something that really appeals to my accountant’s heart, is the statistics I can access and drill into on a regular basis. As well as showing me my daily hit rates and what posts are proving particularly popular, I can also compare and contrast my monthly statistics and averages since I first started writing nearly 4 years ago.  In my first 10 months, I achieved nearly 6,000 views, whilst the following 2 years saw me hitting the heady heights of over 11,000 blog post reads over the year. Last January I decided I wanted to break the 12,000 mark and set myself a target of 1,000 hits a month to reach it. Some months it was close with the lowest read rate being 1,030 in March, whereas other months were hugely successful including a 2016 high of 2,396 in August. My year-end goal of 12,000 was well and truly met and I can confirm Successthat I actually achieved over 16,000 hits in the year, something I never really thought possible when I started blogging in 2013. I haven’t set myself a NY resolution for years, so it was a fantastic feeling when I finally passed that last 1,000 mark in December and could quietly pat myself on the back.

This year our household has taken something of a mixed approach to the whole matter of resolutions, being firmly split between 2 distinct camps: those who do (Mike and G) and those who don’t (M and me). I’m not going to publicly share the resolution decisions of my loved ones at this stage in the game, though I promise to let you all know if they manage to achieve what they’re planning to do as and when they reach their end goal. As for me, well it’s not strictly true that I haven’t set myself a resolution, but rather a year’s goal that is to successfully juggle the new pressures of blog writing, awards judging, T1D managing, parenting and full-time working so that I can do enough in each area and hopefully fail at none. My focus is having to be sharpened at the moment to ensure that none of the balls is dropped and I guess only time will tell how successful I can actually be. Of course, I will undoubtedly share my progress on my blog.

How about you? Have you started 2017 with a resolution or goal in place? I hope that if you have you’ve managed to keep it so far and that you have continued success with it!

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Thermos-inspired lunches

There are 2 things that are promising to totally transform the look of M’s packed lunches for school in 2017. The first is the reintroduction of parsnips to his diet as I’m finally able to cook a crisp-like addition for his lunchbox, which makes them seem a lot more like those of his friends after a long time of feeling so very different. 9270635_r_z002a_uc1440961The second was thanks to a somewhat last-minute Christmas present from good ol’ Father Christmas, which M is absolutely thrilled with and can’t wait to try out now that the new term has started – an individual thermos flask complete with a folding metal spoon tucked neatly into its top.

He’s been considering the matter at great length and has already come up with a long list of meals that he is keen to try out over the coming months. From pasta dishes including lasagne, to risotto and stir-fry, the options are endless, but today’s maiden meal was new-found favourite, parsnip and apple soup. This simple meal is beautifully easy to make, which is something I’m extremely grateful for now that I’m back to work full-time and every second saved cooking is a second gainfully employed somewhere else. Even better, the range of herbs and spices that I can safely add to M’s meals means that I can img_12781create enough subtle flavour differences to his soups to provide some much-needed variety and keep him engaged in the novelty of his first hot school lunches in a long time.

For the launch of our experimental hot meals at school, I made a spicy apple and parsnip soup and included a few of the Rude Health mini rice crackers that have become an integral part of many of M’s lunch and snack times. Whilst nothing can really compare to the unquestionable delight of dipping some crusty French bread into a bowl of rich, creamy soup, the portion of homemade, and safe, parsnip and apple soup accompanied by a handful of rice crackers was everything that M was longing for it to be and that meant it was a resounding success. Over the coming weeks I’m looking forward to experimenting a little more with texture and flavour and will be looking at replacing the apple with pear as well as changing the herbs added to each bowlful. Most of all, I’m hoping that M continues to be excited about the prospect of enjoying a mix of hot and cold meals during the next few months of the school year.

Looking ahead

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The start of a New Year is always an opportunity to reflect on the things that have passed, but more importantly, to look ahead to the adventures that are yet to come. We had a 2016 filled with as many highs and lows as we’ve faced in previous years and I don’t doubt that 2017 will be equally challenging in ways that are both startlingly similar and scarily new. I’m looking forward to a year that will investigate new possibilities for M’s diet and seek potential answers for what’s going on in his body as well as watching as G tries out new opportunities and starts thinking ahead to the school subjects she wants to study for GCSEs – a conversation that has filled our end-of-holidays walk this afternoon. We don’t know exactly what this year will bring, but it’s always good to look back on everything that has brought us to this place: