Don’t be afraid to ASK

ask-boltonNot too many months ago, we happened to find ourselves near the beautiful town of Great Malvern and in need of a late Sunday lunch. Much to my surprise, given how small I’d assumed this town was, I discovered through a hurried internet search that Great Malvern itself hosts an ASK restaurant and quick glance at their online menu suggested that we’d be able to feed our dynamic duo there without too much hassle. It doesn’t fail to amaze me that we consistently find ourselves enjoying the food at Italian restaurants given their regular gluten-laden fare of pasta and pizza, but I suppose it should really come as no surprise given how many allergy-friendly foods we found on our recent trip to Italy. They almost always serve a chicken dish in one form or another, so whilst it is near impossible to get M a portion of plain rice to accompany his meal, risotto being their main rice offering, we are happy to eat there and I often recommend them on to others in the allergy community.

img_06291As always the children ordered their perennial favourites when we eat anywhere that has Italian food on offer. G opted for a gluten- and dairy-free pepperoni pizza with extra goats cheese, whilst M had his usual dish of grilled chicken breast and cucumber. Our waiter made sure he fully understood our allergy requirements as well as making a note for the kitchen and checked their allergen menu to make sure that everything we had ordered could be safely prepared for G and M. img_06261We’ve taken to ordering adult-sized portions of meals for both children these days and the generous amounts that arrived were more than enough to satisfy my ravenous pair, with both clearing their plates in impressive fashion.

As ever the allergy-offerings for dessert were poor and G was disappointed that they didn’t serve a gluten-free garlic bread or dough balls for a starter, something she’s become addicted to whenever we visit Pizza Express. We enjoyed our first meal at ASK and it’s always great to have another safe restaurant in our back pocket for future meals out. The Great Malvern restaurant is set in a beautiful location and we had a table looking out over the fantastic view from the upstairs windows.

G’s marks: 7/10              M’s marks: 7.5/10

A Survival Guide For School & Allergies

The end of August always seems to be something of a surprise in our household. We arrive home from our holiday feeling relaxed and calm and then almost immediately face a madcap race to reach the finish line of shoes bought, uniform named, PE kits found and bags packed before school starts. In years past I have also had to make sure provisions are packed, discussions had and medical notes updated for M, but, for the first time ever, this year I wasn’t trying to squeeze in a critical meeting alongside my own new start with a new job. img_11331I know that next year when M moves up to our local secondary school it will be a very different picture, but after 3 years of working with the teaching community at our junior school, and with no major changes to contend with, M was able to start in Year 6 without this over-anxious Mum hovering in the background.

Without a doubt we have been incredibly lucky with the amazing support given by the fantastic teaching staff at our local school, but we have also had more than our fair share of bad experiences and teachers who don’t care in the past and I can well remember the anxieties and hours of meticulous planning that heralded the start of every new school year. The novelty of not having to head into the classroom before the end of M’s first week back has still not worn off and I’m certain that it’s thanks to the hard work that’s been put in on all sides to formulate strategies that meet M’s needs and to develop a strong working relationship between home and school that is reliant on open communication that flows both ways.

Over the last few weeks, there’s be a lot of chatter in the online allergy community about the fears that surround the milestone of starting school and, with over 8 years of “parenting-a-school-child-with-allergies” experience under my belt, I’ve been asked what tips I would give to any parent facing this situation for the first time. In all honesty, M’s first few years at school were difficult and certainly not the positive experience we would have liked. We had to deal with a SENCo, who trivialised his allergies because they “…wouldn’t have to call 999 if he ate something he shouldn’t…” and refused to recognise how important it was to communicate his allergies and health issues to any member of staff dealing with him and not just his class teacher, which led to numerous occasions of him being offered food he couldn’t eat. His teachers lost their focus in teaching him because they felt he already had a lot to cope with with his regular appointments at GOSH and his education suffered as speech impediments, dyslexia and dyspraxia were missed by those who worked with him on a day-to-day basis.

Fast-forward to the start of Year 3 and all our negative experiences became a thing of the past. The year actually began at the end of Year 2, when I met with the Head, SENCo and class teacher of his new school to discuss all of M’s health and educational needs and worked with them to put practical solutions into place before the term started. They understood the value of seeing him as more than just his EGID and food allergies, circle-timebut also knew that his health problems were a big part of his everyday life and couldn’t be ignored. At the end of his first week there, M’s teacher held a circle time in class where she shared about M’s ill-health and restricted diet with his classmates. It was done in such a nurturing and non-confrontational manner that by the end of the session M was willing to answer any question that his new friends had about what they had been told himself and has being doing so ever since.

fabed1The information sheets that I had provided were given to the teachers and, combined with the notes they had taken whilst talking with me, used to draw up a healthcare plan for M that covered all possible situations. His on-going bowel control problems were sensitively handled and a contingency plan put in place to ensure that he always has access to a toilet wherever he is in the school. The HCP was written by the school SENCo and then sent home for my review before being published, shared with the whole teaching team and displayed prominently in the staff-room. Even better, every year since then I have been asked to review and amend his HCP to reflect any medical changes that have happened and the school continue to be sympathetic to his needs.

SAM_1175As for his swap box, it has proved to be an invaluable tool in the classroom setting and is something that is really easy to implement. The idea behind the swap box is a simple one – it contains a selection of safe items, be they edible or non-edible, that can be swapped for those unexpected treats that sometimes come into the classroom to celebrate birthdays or other special events. When M’s swap box came into being, it was filled with a mix of Haribo sweets and the odd Lego minifigure and the choice was his as to what he chose to take. Since going elemental 2 years ago, the box now contains Lego, trading cards and other fun small toys and ensures that M never feels that he is missing out when his friends celebrate. What’s more, his teachers have taken inspiration from it for their own purchases of small gifts at Christmas or the end of term and given him something he can enjoy.

I think the biggest secret to our great experience with our Junior school is communication. The lines of communication are always open and actively work in both directions between home and school through meetings, phone calls, e-mails and the home/school book. The willingness of so many of the school staff to learn to support M to the best of their ability has created a level of trust unlike any other and means that I am ea544311f5697d6334b2df7079ccedf9happy to leave M in their more than capable hands on a daily basis. It is a testament to their dedication to their work that, in the last 3 years, the only things that have caused an extended absence from school have been the annual hospital admissions at GOSH. They have always endeavoured to make sure that M is safe whilst at school and the fact that he was able to attend as normal with both his NG feeding tube and his broken leg is incredible. A truly remarkable relationship has grown over the years between our family and so many of the teachers and is something I really value.

They have also nurtured and encouraged M to talk about his allergies and EGID and have shown continued support as he has become an advocate for educating others about his illness. M has held cake sales, run playground games and created short films explaining the impact his diagnosis has on his life. He has developed a confidence in talking to others and 18 months ago was able to answer the questions asked by members of home-school-connectionevery class in the school. When he left his Infants school, he was a child reluctant to talk about his food allergies or hospital appointments because he was scared of being isolated and bullied because of how different he was to everyone else. These days he has an incredibly strong friendship group who look out for him during school hours and think about him when he’s had to be in hospital, and he never thinks twice to share what’s going on with his friends.

If I had to sum it up, I guess I would say this:

Be open, be honest, be available. Keep communicating and tell them how they can make it better if you need to. Do what you can to help them out and don’t forget to say thank you when they get it right.

When September arrives

img_11331September can really only mean one thing: the start of the new school year and all that that entails. This year it has been just that little bit more hectic than usual as some things have changed significantly, whilst others have remained strangely static. G has moved up into Year 8 and is already embracing the addition of 3 new subjects to her timetable,very much enjoying the extra lessons of French, Dance and Drama as well as the move from Food and Textiles to Product Design. With the new school year, so there is also a new school uniform and whilst G is still a little sceptical about its appeal, I am delighted with how smart she looks, though only time will tell if that will last for the full year or not. M is at the start of the final year of his Junior school career and I still can’t quite believe that my baby is  now one of the oldest in the school. We know that this year will be full of challenges from an educational point of view, but with the continued support of his teachers at school and a full year of specialist lessons at our local Dyslexia centre, we are confident that he will be able to achieve his very best.

This September has also signified some major decisions about my own career after I was made redundant out of the blue at the end of the last school year. I am incredibly fortunate that my accountancy training meant that I was offered a new job within a remarkably short time-frame and I started that position the week before the children headed back to school. I felt encouraged by my new role and yet the last 2 weeks IMG_0743[1]have been filled with unexpected angst as one of the other positions I had applied for requested an interview and then offered me the job. After hours of deliberation and discussion and numerous sleepless nights, I have decided to accept this second role as it is an incredibly exciting and challenging position that I believe I would regret turning down. I am really looking forward to starting this new job at the beginning of October, which will bring some significant changes to our household as I will be back to working full-time hours for the first time since G was born, although I am lucky that they are happy to give me flexible hours and everything I need to sometimes work at home.

img_11381September has also been the month where we enjoyed a flying visit from Grandma and Grandpa, Mike’s parents, from Canada. G and M were so excited to see their grandparents for the first time in 4 years that they created a banner to welcome them when we went to collect them from our local airport. img_11431Mike finally finished the renovation job on our 4th bedroom, a task that had been started back in April,
but was interrupted first by the whole saga of M’s broken leg and then the demands of work and our summer holiday in Portugal. The room looks great, but his parents never got to sleep there as Mike had a last-minute panic that the futon bed might be too low for them and instead they slept in G’s room, whilst our gorgeous girlie moved to the freshly painted spare room for a few days. G, M and I all had to be at school and work as normal, but Mike spent some precious time with his parents before they returned home. It was a busy few days for us all, but we managed to squeeze in some family meals and board games where we could.

In the midst of all that busyness, there is one thing that has remained relatively static and that is the current position with M’s health, a real mixed blessing. The last year has been filled with numerous food trials, including during our disastrous admission at GOSH last December, but M is still stuck at just 5 safe foods and despite our hopes to start challenging him again soon, he is not even close to being symptom-free, something we’ve been striving for since his leg came out of plaster at the start of the summer. We are surviving in limbo with minimal medical input as the plan to start some shared gastro care with our local hospital has not yet materialised and we are not due back to GOSH for another couple of months. It is very difficult to see where the next few months will take us, particularly when you add in the added stresses of his Year 6 SATs, and so Mike and I are hoping for the best, but preparing for a bumpy ride.

Rice Two-Ways

When we made the decision to go elemental in an attempt to bring about a reduction in M’s chronic symptoms, I never imagined that the reintroduction of foods would be as fraught and intensely stressful as it has proved to be. In the past 12 months we have made absolutely no progress whatsoever and everyone is stumped about what the root cause of M’s problems actually is, with opinions fluctuating between complications from his EC, “simple” multiple allergies or a physiological problem with his gut. Whilst the teams of medical professionals involved in M’s care try to decide on what direction they should follow next, I’m left stretching my ingenuity to its very limits when it comes to preparing meals for my understandably fed up 10-year-old.

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I’m constantly on the search for anything that will make my cooking life that tiny bit easier and a lot more interesting and love finding products that are both M-friendly and a little out of the ordinary. Like many of you I’ve eaten rice for years, but generally just as boiled rice to go with a tasty chilli con carne or egg fried from the local Chinese takeaway and had never really thought much about it. Since rice has become the staple carbohydrate of M’s diet, I’ve come to love the versatility of this ingredient and continue to be delighted by the many versions of it I’ve uncovered along the way. Rice milk, rice porridge flakes, rice cereal, rice flour, rice crackers, rice noodles, rice pasta, rice vinegar and your choice of plain rice: long grain, brown, basmati, wild or black have an overwhelming presence in my kitchen cupboards and so now do 2 rice-based products that I’ve discovered over the summer.

img_08441First are Blue Dragon Spring Roll Wrappers, which do contain a small amount of tapioca starch, but are predominantly made from rice flour. Having recently perfected my own version of lemon chicken to satisfy M’s longing for some much-missed Chinese food, these seemed like a great addition to the repertoire and I couldn’t wait to make both M and G some M-friendly pancake rolls for dinner. If you’ve never attempted to cook with these before, let me tell you that they are not the easiest ingredient to use, but I suspect that a lot more practice will make a big difference. I set up my workspace next to the kettle, filled a shallow baking dish with boiling water and then painstakingly soaked the wrappers, 1 sheet at a time, before filling them with some thinly sliced chicken, cucumber, apple and pear that I had already prepared. img_08461I cooked them in 2 different ways, interested to see which my discerning duo preferred and was very much surprised by the results when they came in. G loved the bigger roll which was just prepared as I described above, whilst M told me he’d opt for the shallow-fried triangles every time. I am thrilled that the wrappers were so well received by both children and can’t wait to see what else I can cook with them as I’m sure that they are versatile enough to be used to create some sweet treats as well as the more traditional savoury dishes.

img_11031The other is a real store cupboard essential and I can’t begin to tell you how excited I was to discover this item when I was perusing the virtual aisles of the fantastic online supermarket that is the FreeFromMarket. As for when the box of Clearspring Brown Rice Breadcrumbs arrived, nestled in the midst of my other purchases, well, Mike and the children were all summoned by my squeals of joy and then left me to my celebrations, shaking their heads sadly in complete disbelief. I am sure that there are so many ways to use the breadcrumbs in my cooking, but I started by preparing a breaded, stuffed chicken breast along the lines of a more traditional chicken kiev. I made a coconut oil and herb mix, which I carefully squeezed inside the cut I’d made in the chicken breast, before coating it liberally with the breadcrumbs. 25 minutes later and img_11091dinner was ready with a golden brown chicken breast tantalising the taste buds with both its look and its smell. They really were delicious and neither child was very willing to sacrifice a mouthful of their meal for Mum to taste-test herself. Now that the summer holidays are over and we’re heading into the autumn, roast dinners will make a more regular appearance in our household and I’m hoping to use these breadcrumbs to create an M-friendly stuffing for us all to enjoy.

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Portugal Photo Round-up 2016

Our 10 days in Portugal were wonderful and just what we all needed. We had great fun, lots of sunshine, delicious food, family time and a chance to get a break from all that’s been going on at home. It’s been a busy few days, so these are just a few photos to share that capture our fabulous holiday:

Eating out with allergies the Portuguese Way

I’ll be honest, the last few months have been difficult in more ways than one. M’s broken leg has meant that we’ve been unable to trial any new foods since April, which has been tough for him especially as we’ve just marked one year since we last successfully introduced a safe food into his diet. I knew that his restrictions were taking an emotional toll on M, but nothing expressed more than one he recently apologised to me for feeling fed up and complaining about the fact that he has to eat the same 5 foods day in, day out. As we were preparing for our Portuguese holiday, we quickly realised that, without doubt, our travels abroad would stretch our keen foodie to his absolute limits and we needed to come up with a plan that would allow him to enjoy himself without too much pressure on his health.
This was particularly important as M had been frustrated to not be able to trial the couple of new foods we had pinpointed as pre-Portugal challenges because of his lengthy recovery and was extremely disappointed at the prospect of only eating his safe foods whilst the rest of us enjoyed seafood and fish galore. img_08971After much discussion, both between ourselves and with M too, Mike and I decided that we would allow him the occasional day off whilst we were in Portugal and let him choose a normally forbidden food or two to enjoy.

From the start we made it very clear that this couldn’t be an everyday treat and that between days he would have to keep strictly to his diet and so we planned accordingly. The holiday was split between a short hotel stint in the capital city and a longer stay in a self-catering apartment on the Algarve, which allowed us to cater for M and G as and when was needed. Our medical suitcase had been crammed full of a selection of safe foods for M including cartons of rice milk, cereal and rice pasta as I had no real idea as to what we would be able to find for him where we were based. img_10511Unlike our recent travels to Italy, where allergy-friendly offerings had been easy to find in the airport and service stations, safe foods were not so readily available in Portugal, but our trip to the Jumbo hypermarket just outside of Portimão proved to be a visit to a real Aladdin’s cave. My Mum and I were impressed with the array of dairy-free milks available and chose some new brands of rice milk for M to taste during our holiday. As for the selection of products on the freefrom aisle, I could easily have spent a lot longer than I did examining each and every one of them to see which were suitable for both children.  I managed to buy nearly everything we needed including cookies for G and rice cream for M and the only disappointment was that I couldn’t find a gluten-free loaf of bread for G. img_10521There was several bread mixes available, but there was no way I was ever going to entertain the thought of baking a loaf of bread for her in 35°C weather and so she managed with some delicious gluten- and dairy-free crackers I discovered instead.

M’s experience of eating out with allergies in Portugal was mixed to say the least with the resounding success of two dinners at the Hard Rock Café in central Lisbon in stark contrast to the disappointing first night meal of plain boiled rice and an apple and it was hard to predict what the rest of our holiday would bring. Our translation cards meant that language wasn’t a barrier to making our needs known, but we did struggle with well-meaning restaurant staff offering alternatives even though it was clearly stated that these were the only safe foods he can eat. To be fair, I can understand their difficulty in believing that M’s diet really is that restricted, but it was frustrating to deal with especially when the viable food options were diminishing before our eyes and a certain 10 year-old was hopeful we’d give up and give in and allow him another unplanned treat. For the sake of M’s health, we did have to insist that some of our meals out were strictly M-friendly and the offerings were often mixed. In the UK we frequently find that most restaurants are unable to provide plain rice and so M often ends up with a meal consisting of chicken and cucumber and occasionally some apple too, all supplemented by a bag of slightly crushed Rude Health Mini Rice thins recovered from the depths of my handbag. Portugal was surprisingly no different. We did discover a few restaurants that could cook plain, boiled rice, but sadly this was rarely accompanied by safe chicken and he ended up with some very odd meals indeed.

img_10841However, as well as the Hard Rock Café, we did achieve great success in 2 restaurants in Alvor, where not only was M well-fed, but G enjoyed some great dinners too. The first was at what has long been a favourite of ours, Vagabondo in Alvor itself, a place that the children were keen to go back to again this year. Every year since our first visit there, M and G have loved their chicken kebab starter because of the delicious peanut sauce it is served with and it’s a dish that they’ve asked me to recreate at home time and time again. Peanuts have never been a problem for M in the past, but I was anxious about him suffering an unexpected reaction to them and wasn’t keen to trial them for the first time whilst we were abroad. M was disappointed by my decision, but reluctantly agreed to eat his safe foods only. By the time it came to dinner there, he was still suffering from the effects of some of the other “treats” he’d enjoyed during the week and was happy to stick to his normal diet for the evening. Once our waitress grasped M’s exact needs, she was fantastic at sorting out his meal and advised us brilliantly about what would be safe for him from the menu. img_10851Unfortunately the wild rice was marinated with garlic beforehand so we chose not to order for M, but the plate that arrived contained a huge piece of chicken as well as some cucumber slices and a specially prepared apple from our thoughtful waitress. The apple had been cut and served to resemble chips and so M’s plate looked similar to G’s dinner of a chicken and bacon kebab and chips. It was a large meal, beautifully prepared and he managed to eat every single mouthful.
The second and surprise success of the entire holiday was our final lunch, which traditionally we have always enjoyed at the poolside restaurant at the hotel Pestana Alvor Praia. img_10871In the past the children have chosen gluten-free hot dogs and chips, but we had spotted that they served grilled chicken and rice and were hopeful that these would be safe for M. Once again, a well-informed, attentive and extremely helpful waitress advised me that there would be no problem in preparing these dishes to ensure they were safe for M and in the end both children enjoyed a delicious grilled chicken breast, which was served with chips for G and plain rice, cucumber and apple for M. We enjoyed our meals out on holiday and found all of the restaurants eager to help us as best they could when it came to encouraging M and G to eat out with allergies the Portuguese way.

Kids’ eye view of Lisbon

One of the attractions that M was keen to visit was the Oceanário de Lisboa, opened in 1998 as part of the last twentieth century World exhibition and which is the largest indoor aquarium in Europe. Having explored Old Lisbon on our first day, we were all happy to change pace a little and eventually made our way there via the beautiful Praça do Comércio and a necessary decision to hail a Tuk-Tuk, when our hop-on, hop-off bus couldn’t be spotted except as a dim mirage in the distance. By the time we arrived the main queue was dishearteningly long, but thanks to the helpful advice of our friendly Tuk-Tuk driver, IMG_0943[1]we instead joined the one for the ticketing machines and found ourselves moving through it fairly rapidly and were into the aquarium itself within little more than 30 minutes of our arrival.

We were directed to begin our visit with the temporary display before we cannily stopped for a relatively early lunch, which meant we managed to dodge any lengthy waits in the cafeteria. Both children were eager to head into the main and permanent exhibit, lured by the promise of manta rays and rainforests and we spent a glorious afternoon there. This was a truly amazing exhibit that took us on a 2-level tour around the world and around the incredibly impressive huge tank that formed the centrepiece of the aquarium. This tank was filled with all manner of fish and could be easily viewed from just about every angle as we made our way around the building. IMG_0955[1]G and M spent their time photographing or filming what they could see, racing between displays and tanks, and excitedly sharing the tidbits of information they had picked up along the way. From penguins to puffins, jellyfish to sunfish and sea otters to sharks, the kids got to see them all and were totally fascinated the entire time we were there.

Our second child-friendly stop was spotted as we left the Oceanário and meandered our way in the glorious sunshine to where we had been reliably informed we could catch that ever-elusive tour bus back to the main centre. M had actually already identified it as a possible place of interest, but it wasn’t until breakfast time of our final morning that we decided to pay it a visit. After an unsuccessful lengthy wait for the renowned Tram 28, Mike, the children and I decided to abandon the rest of our group as they continued to queue for it and instead headed off to the Pavilhão do Conhecimento or Knowledge Pavillion. IMG_1009[1]We have previously had great experiences visiting other interactive science museums such as the Science Museum London, @Bristol and the Ontario Science Centre in Toronto and G and M have loved every moment of them. I was confident that we would have similar success in Lisbon and couldn’t wait to see what experiments and activities were on offer there.

It was absolutely another day that was more than well worth the very reasonable entrance fee and we explored every inch of the place thoroughly. We started downstairs in the Viral exhibition, which looked at what contagion is and how it works, not just from a bacteria point of view, but also looking at the current spread of the social media trend. G and M loved the interactive displays from capturing and identifying different germs to seeing if watching others yawn can cause you to do the same , as well as whether they could incite a virtual audience to copy their clapping, dance moves and Mexican wave. IMG_0980[1]We paused for a quick lunch, which included a plate of rice for M and some gluten-free chips for G in the on-site restaurant before heading upstairs to tackle everything else the museum had to offer. M was particularly enthralled by the prospect of riding a bike across a high-wire suspended above the main floor of the building and successfully rode there and back, though G was a little more cautious and couldn’t quite brave it. Our afternoon was packed full of activity for us all and I was especially appreciative of the strategically placed armchairs spotted throughout the exhibits for those of us who didn’t want to be on the go the whole time! We filled the time we had there and managed to do most of the exhibits, though not quite all of them. It was a fun afternoon for the whole family and I wouldn’t hesitate to take G and M back if we had the chance.

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