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.
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.
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
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
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.

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.
September 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.
Mike finally finished the renovation job on our 4th bedroom, a task that had been started back in April,
First are
I 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.
The 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
dinner 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.

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.
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.![IMG_1041[1]](https://7yearstodiagnosis.com/wp-content/uploads/2016/08/img_10411-e1472421562148.jpg?w=281&h=300)
Back in 2012, we spent hours glued to our TV screen as London hosted the Olympic and Paralympic games. We were lucky enough to be able to take the children to see some of the sports at both events and I reflected then on the
Our first inspirational athlete is British swimmer, Siobhan-Marie O’Connor, who won
Having read about Siobhan-Marie’s success whilst living with Ulcerative Colitis, I thought I had found a potential candidate for a role model for both M and G; and then I saw an article about the Italian fencer, Aldo Montano, who is living with a severe and potentially life-threatening 
Our back-up plan is our self-catering apartment, which means that there is always somewhere to prepare a simple meal of M’s safe foods without too much trouble, but I do, perhaps selfishly, want a holiday from that daily grind of cooking and be able to enjoy a family meal as we used to do when the children were small. Our previous holidays to Portugal were challenging, but not impossible as M loves fish and seafood which are always readily available, but I worried that the current restrictions might be a demand too far.
Thanks to a detailed e-mail conversation with Yellow Cross Director, Jane Harrison, she agreed that it would make far more sense to detail what M can eat, rather than a lengthy list of his many allergens and suggested she spoke to their translator to cost out these personalised cards. We settled on appropriate wording, it was passed to their Portuguese translator and I was quoted a very reasonable £20 for a set of 4 ![IMG_0617[1]](https://7yearstodiagnosis.com/wp-content/uploads/2016/06/img_06171-e1467302233284.jpg?w=225&h=300)
The preceding weeks had been busy with costume preparations and plans to pimp his wheelchair for the event and his decision to ask for a 70s themed cast at the previous fracture clinic meant that we were all set for the parade. Mike and I had also been roped in to help out for the day and I had even managed a few tweaks to our own clothes to make sure we were part of the 70s disco theme. All of the children were fantastic as they sang and danced their way towards the town’s football club and entertained the crowds, who joined in with the familiar moves of “Night Fever” and “Tragedy”. I was particularly proud of G, whose hard work and dedication to her dance saw her selected to be one of the 2 dance captains and she led the group with a flair and sense of fun that I rarely see from her when she’s performing. She really stepped up to the mark and the smile on her face showed just how much she enjoyed it.
One of things that I know M has really missed since his diet became so restricted is the occasional Chinese takeaway shared with the rest of the family. For as long as I can remember our young foodie has loved eating Chinese food and insisted on mastering the chopsticks early on, so the loss of that treat really did hit him hard. Thanks to the amazing team at our local
I’m certain that the authentic Chinese recipe includes soy sauce, but with soya definitely banned from our repertoire for the foreseeable, I tweaked the sharp flavour of the lemon curd by adding a little more sugar as well as some salt, pepper and rosemary until I had a savoury sauce I was confident the children would eat. As I finished cooking the rice, chicken and sauce in my trusty wok, G and M drifted to the table drawn by the delicious smell, eagerly asking what was for dinner. The portions I served soon disappeared as did the children once their plates were empty, which, without a doubt, signalled a new and successful