Tag Archives: summer

Don’t be afraid to ASK

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. I 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, but 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.

fabed1 The 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_1175 As 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 ea544311f5697d6334b2df7079ccedf9 happy 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-connection every 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.

Portugal Photo Round-up 2016

1 Reply

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

6 Replies

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 that more than when 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. After 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. Unlike 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. There 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.

However, 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. Unfortunately 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. In 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

2 Replies

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, 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. 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. 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. 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.

Hard Rock Cafe, Lisboa

5 Replies

Dinner out on our first evening in Lisbon was not as easy as we might have hoped and, in some ways, encapsulated our worst fears. By the time we had made our way from the airport to our hotel, we didn’t really want to hunt around with two tired children in tow, so simply headed to a local restaurant with our fingers tightly crossed and our recently acquired Yellow Cross translation cards clutched in my hands. We found a restaurant that looked promising as it had grilled chicken and rice on the menu and sat down to peruse the choices for the rest of the family until it came time to order, when I handed over the cards and waited to hear their response. The cards did their job, but whilst the restaurant staff were incredibly helpful in trying to provide safe food, poor M ended up with just a plate of plain boiled rice and an apple. At that point my Mum vowed that she couldn’t face another dinner out like that and so the search began for somewhere that could cater much better for M’s particular needs.

As a long-time fan of the Hard Rock Cafe, I had been delighted to discover a couple of weeks before we travelled that there was one in Lisbon and had even managed to find a copy of their menu, including allergens, on-line. My e-mail enquiry about their ability to cater for M had gone unanswered, but I felt confident that there was a good chance they would be able to cook him some safe chicken at very least and so we headed there for our second meal in Lisbon. We were not disappointed. The Hard Rock policy is that all allergy enquiries and requests are dealt with by the manager and she came to our table to understand exactly what we needed. They weren’t able to provide rice for M as it’s cooked with vegetables, but an impressive plate of grilled chicken with apple and cucumber slices arrived and was quickly devoured by our hungry boy. G was also well catered for as they had comprehensive allergen listings available and could prepare all burgers and sandwiches using a delicious gluten- and dairy-free bread. She chose the classic club sandwich with fries and I was delighted to hear that they used a separate fryer to cook the fries to ensure that cross-contamination risks were kept to a minimum.

The meal was such a success that when my Mum suggested that we go back for our final meal out in Lisbon, Mike, the children and I were quick to agree. Once again their service in meeting our allergy needs was impeccable and despite it being a much busier Friday evening, we were still confident that the food had been carefully prepared. We ran through M’s food restrictions with that evening’s manager and the resulting plate of food earned a well deserved 9.5 out of 10 from M. We did have a couple of small hiccups with both meals, but they were quickly dealt with and the staff were keen to make sure that we were happy. M’s food was re-plated on a clean dish when I pointed out that the decorative strawberries included on the original plate were not safe for him, and G’s mayonnaise was replaced after she found an unidentifiable lump in the bottom of the small serving dish. It turned out to be a stray spoonful of coleslaw, but they apologised profusely and the manager even came back to the table to add her apologies and to ensure that the rest of our meals was everything we needed. It was great to discover that this old favourite of mine was so capable of preparing safe and delicious meals that both children absolutely loved and I’m now excited to discover what other locations we can visit on future trips.

City Adventures in Lisbon

4 Replies

The first few days of our Portuguese adventures were spent in the capital city, Lisbon, where we enjoyed some great days out in what was a first visit for us, even though we know parts of the Algarve extremely well. For anyone wondering where to go on a family break, Lisbon has a huge variety of choices to suit just about every age and I wouldn’t hesitate to recommend it. We weren’t staying in Old Lisbon itself, but rather in one of its suburbs and it was extremely easy to travel in and out of the main centre by train using their Via Viagem travel card system, something akin to London’s Oyster cards.

My Mum had lent me her Lisbon guide-book before we went, which I had just about had time to skim through and highlight some things which I thought might appeal to us all, given our ages ranged from 10 to somewhere in the 60s, and I knew she had a list of ‘must-sees’ to hand too. Her Berlitz Pocket Guide also proved to be a welcome distraction for an unexpectedly nervous M, who was surprisingly anxious about our 2 hour flight as he hasn’t flown since before having his tube and spent the time studying the guide pinpointing attractions he really wanted to visit whilst we were there. IMG_0957[1] With a list as long as our arm to work our way through, we narrowed down our choices to the top few that appealed the most to us all and set off to see just how much ground we could cover in our 3 full days in the city.

Our main choice for the first day was to jump on to a “Hop-on, hop-off” bus, a firm favourite in our family as a way of exploring a new place as it not only helps orientate ourselves, but also serves as a great way of seeing some sights that we might otherwise not get to visit due to time constraints. We used the familiar City Sightseeing tours as a company we’ve used around the world with great success, but have to say that this time we were left a little disappointed. The bus-stops were poorly signed and we frequently found ourselves walking miles in an attempt to work out exactly where we needed to be to catch the bus back to wherever we next wanted to be. On one occasion, we even gave up completely having spied the bus heading away from us after a good 20 minutes standing in the blazing sun at a marked bus-stop on what we knew had to be the wrong side of the road for the direction we wanted and instead negotiated a great rate with one of the Tuk Tuk drivers, much to the children’s delight.

We took the bus and travelled out to the area of Belém, where M had identified the impressive Torre de Belém as a necessary sightseeing stop. He was particularly intrigued by the stone rhino that graces the base of one of the Tower’s turrets and insisted we explored until we found it whilst the older members of our group held a place in the queue. We waited for well over an hour in the soaring heat and it was just about worth the wait. IMG_0914[1] Both children enjoyed exploring the different levels of the Tower, honing their photography skills amongst the cannons in the artillery as well as in the dungeons and of the stunning panoramic views of the River Tagus from the top. The tower is climbed via a steep spiral staircase and a series of sequenced traffic lights indicated when it was time to climb up, down, or pause for breath in one of the rooms off the main staircase.

Having exhausted all that the Torre de Belém had to offer, my Mum was keen for us to head towards the infamous Padrão dos Descobrimentos, perhaps one of the most well-known sights in Lisbon. Sadly, the monument that depicts a number of important Portuguese historical figures including explorers Magellan and Vasco da Gama, was hidden by scaffolding, but we enjoyed the walk along the river before wearily trekking on to our ever-elusive next bus-stop. Our travels also took us past the impressive Cristo Rei statue – M’s “…like Christ the Redeemer, but not..” – the beautiful Moorish-inspired Campo Pequeno Bullring and the awe-inspiring Águas Livres Aqueduct, all of which give us great reason to visit this beautiful city again.

IMG_1041[1]

What we’ve learned from Rio 2016

Summer Bakes

Best. Week. Ever.

21 Replies

Back at the end of March, G was lucky enough to attend the amazing Over The Wall sibling camp and had the experience of a lifetime. I knew just how much of a success that week away from home had been almost the minute she stepped off the bus as she asked with fervour if we could apply for her to go again next year. The last few weeks have been filled with a mix of emotions as M was thrilled to learn that he had been offered a place on the OTW Health Challenges camp this August, but the ongoing drama with his broken leg left us questioning whether he’d actually be able to go (of course he would, it’s a camp for kids with health challenges after all), and take part (well as best as his leg and determination would allow), and get from it as much as his sister had (we could only hope). Fortunately, the final fracture clinic appointment that saw M being given the all-clear and discharged from the care of the orthopaedic team fell on the Friday before IMG_0791[1] he was due to head off to camp on the Monday and the assurance of the consultant that his leg was at long last fully healed gave M the confidence he needed that he could fully participate in all the activities on offer during the week.

It was a major event in our household. It’s the first time that M has been able to go away from home without being with family; he’s never even had a sleepover because of his bowel problems and sleep issues and so it was unsurprising that our car journey to Dorset was eerily quiet as he struggled to get his anxieties under some semblance of control. It was a very pensive boy who clung to my hand as we found our way to the welcome desk to sign him in, although by the time I left around 2 hours later, with medicines handed over to the Beach Hut medical team and clothes unpacked and safely put away, he was starting to warm a little to his surroundings and had already enjoyed a hysterical couple of games of Guess Who? with 2 of the volunteers. Seeing the other children chatting and laughing as they arrived on-site, it was easy, even for me, to forget that these are children living with serious illnesses. Illnesses which are sometimes life-limiting and are always life-impacting. My child was one of them. IMG_0792[1] And when M commented on how comfortable his bed was compared to the ones in hospital I could see the volunteers in the room with us, both of whom were new this year, take a deep breath, unexpectedly shaken just a little by this vivid reminder that every child there is facing a chronic illness that is not always obvious at first glance. I was not immune to the pathos of that situation and my heart broke a little that this was his first thought, his opening response to this new experience.

Knowing he was settled and in safe hands meant that I could leave the site almost without a backwards glance. I could see he was torn between wanting to give me a hug and kiss goodbye and not wanting to show affection in front of his new room-mates, so I offered a quick hug and a kiss on the head before heading back to my car, not giving him opportunity to wobble. Despite concerns to the contrary from other people, this Mummy was fine with leaving her boy there because I had absolute confidence that they would take care of him and support him and make sure he had a week where the medical implications of his everyday world were not at the forefront of his mind. The lack of communication during the week could easily have worried me senseless, but instead I knew that it really was a case of “no news is good news” as camp would only get in touch if things were going wrong. I was also confident that they were more than able to meet his dietary requirements and would make the effort to give him meals that were more than just simple rice and chicken. Not long after the end of G’s sibling camp, I had been sent a draft menu for M that one of the camp chefs had devised based on his safe foods at the time and we were all drooling at the sound of some of the dishes. In the 2 weeks leading up to camp, OTW contacted me again to check whether there had been any changes to his diet and to reassure me that they were prepared for the challenge of feeding him whilst he was there.

I can’t even begin to describe how I felt when I picked him up the following Saturday. G joined me for the drive to Dorset and was able to share so many precious memories of her own as we went through the gates and along the drive towards the house. We pulled up to the grassed area which was ablaze with colour as the various groups gathered to wave goodbye to all the campers as they started their journey home. M was the last Orange Boy standing and the farewell given to him by the team volunteers saw more than one of us with tears in our eyes. Seeing this group of wonderful adults, who had become his family for the week, surround him and sing “M, we love you, deep down in our hearts…deep down….” to him with genuine affection brought a definite lump to my throat, not least because M was equally overcome by his emotions and obviously struggling not to give into them in public.

IMG_0812[1] As they lined up outside the car and waved us off, the atmosphere inside was in stark contrast to when we arrived as M sat smiling bravely, with tears rolling down his cheeks because he wasn’t ready to leave camp and go back home. He was emotionally and physically exhausted, but refused to let sleep overcome him, instead spending the entirety of our homeward journey sharing every tiny aspect of the week he’d just enjoyed. As M told us about camp, he was worried that he would hurt my feelings when he said that the chef cooked some delicious meals that were, in the most part, “..even better than yours Mummy!”, but I didn’t mind a bit. His close new friendship with one of the other boys in his team, who also had food allergies, meant that neither of them felt isolated as they sat next to each other as their food was served at each meal. And my heart swelled when he said he hadn’t really missed us or thought of us that much because he had been having such a good time as I understand that that was so much more than I could ever have wanted for his first experience away from home.

It’s hard to encapsulate just why this week was such a significant one for M, but it really has been an incredible and life-changing experience. For once he felt normal and not the exception in the group, and that alone is priceless to me. M’s confidence has soared as he pushed himself, and his body, to the limit and tried new activities that would have scared him before and his honesty impressed me as he relayed just how terrifying some of those new experiences had been until he had a go and conquered those fears. He has developed more independence and an even greater awareness of other people that reflects more maturity than he had before. Yesterday he took responsibility for making his own breakfast and even asked G and me what we wanted to eat so he could make our breakfasts too. That may seem like nothing much, but for a child where the world really has revolved around his needs over the last decade, it was a huge shift in attitude.

My words cannot do justice to the time he had at OTW camp, but I know how fantastic it was as he is already asking if he can go back again – not just next year, but every year until he’s too old to be a camper any more. What’s more, his aim is to become a volunteer at camp eventually if he can. M expressed it best when he told me it had been the Best. Week. Ever.