May 8th: No matter what’s going on, there’s no escaping #EGID or leaving it at home, even for one day. For all those facing exams over the coming weeks, their EGID will be just one more challenge that they have to survive.
Today, this is for M – and his schoolmates and the other Year 6s across the country who are taking their SATs this week. We’re so proud of you: of the obstacles you’ve already overcome and your determination to succeed. Just remember, the results really don’t matter.
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.
September 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]](https://7yearstodiagnosis.files.wordpress.com/2016/07/img_07431-e1469212032275.jpg?w=292&h=300)
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,
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.
Do you remember that long, long list of things that I was facing at the beginning of March? With the month-end in sight, I am, quite literally, limping towards the finish line, just thankful that the long Easter weekend ahead means the opportunity for some much-needed lie-ins and down-time; but how did March go in then end?
World book day and required costume x 1 – M decided on what can only be described as something of a left-field choice for your average 9 year-old and dressed up as Ford Prefect from Douglas Adams’ well-loved trilogy of 5 books, “The Hitchhiker’s Guide to the Galaxy“. It was one of the easiest costumes he’s ever asked me to make and to our delight, he won a £5 book token for the best WBD costume in his class.
Parents evenings x 2 – Both evenings went extremely well and we are so proud of the strides both children have made during this school year. M has been working hard at beating the challenges of his dyslexia and dyspraxia and is developing some beautiful handwriting when he remembers to try. G has settled well into Year 7 and was described to me as a “conscientious, hard-working, empathetic and focused” member of her tutor group. I was delighted to hear that her confidence has grown throughout the year and that she is developing into a well-respected and natural leader amongst her peers too.
School book fairs x 2 – Attended and books bought.
M-friendly croissants – Recipe adapted, croissants baked and hugely enjoyed as part of the school’s French role-play activity. I achieved above and beyond what I thought was possible with so little notice.
Mothers Day – We enjoyed a quiet day together, although sadly my Mum was unwell and not able to come out for lunch with us. We ate at one of our favourite M-friendly restaurants and were once again impressed by the phenomenal memory of the restaurant manager and the care awarded to both children by all the staff. Well done Wagamama!
Riding lessons – G continues to ride every other weekend and her passion for this hobby is growing. Her latest lesson saw her not only trotting and cantering with confidence, but beginning some preparatory steps to get her ready for jumping – scary stuff but she’s loving every moment.
A 10th birthday and a class assembly – These happened on the same day and were both celebrated in style. It’s hard to believe that my little bean has reached the end of his first decade and I can’t begin to imagine what the next one will hold.
Birthday celebrations – M chose a reptile-themed birthday party and I braved holding a tarantula to help encourage G to beat her fears and do it herself. We combined the day into a double celebration and headed out to a local trampoline park in the afternoon with a couple of friends for a belated marking of G’s 12th birthday too.
Dentist and hair appointments – These both happened as planned and really there’s not much more to say.
GOSH appointment – Mike, M and I headed to London for our first appointment at GOSH since the disastrous admission last December. We weren’t quite sure what to expect, not least because the gastro department is currently in a state of great upheaval. M is doing well, even though we haven’t managed to introduce any more foods safely into his diet since last summer and continues to impress us all by drinking the 400mls of E028 necessary to supplement his limited repertoire of food. His weight has dropped on the centile charts and will need some careful monitoring over the next few months as we continue to search for some more safe foods for him. There is, at long last, a chance of some shared care between GOSH and our local gastro team, which would add some much-needed local level support for our family and the next step is really to wait and see when and if that happens.
School play – Thankfully M’s role as Poseidon meant that I could re-use his toga from Stagecoach last year, so that was one costume crisis off my hands. He was only able to take part in one performance as the matinée was on the same day as his GOSH appointment and unfortunately I wasn’t able to see his evening performance as it clashed with G’s parents evening. However, Mike and G went to watch and told me it was great fun and he did really well.
Performing Arts Exams x 2 – Taken by one very-tired G and one determined-to-do-well M. We won’t know just how well they’ve done until mid-April, but I’m told that they both worked hard and performed well on the day. Having watched their performances the week before, I can’t wait to see if all their efforts paid off and are reflected in their marks.
Spa day – This was a late birthday celebration, a treat that Mike had sorted out for me and my dear friend, and M’s godmother, L. We had a lovely afternoon being pampered, drinking coffee and chatting without interruption by small people, before enjoying a delicious dinner and a few bubbles to mark the day.
Events linked to school topics – This term M’s topic has been India and part of the school experience was to share an Indian meal from a local restaurant. Thanks to previous experience from G’s time in Year 5, I had been anticipating this one for months and a few mini trials of herbs and spices meant that I’ve been able to create a curry-esque meal that’s suitable for M. A mix of cumin, coriander, ginger and rosemary combined with our new discovery of rice cream created the sauce for his staples of chicken and rice. It might not be an authentic dish, but he loves it and it’s meant that he has been able to join in a meal with the rest of his class.
Preparations for G’s sibling camp – I haven’t quite started on this one, but the weekend’s going to be busy as G goes off to camp on Monday. She’s been looking at the list of things she needs and chatting to a friend via e-mail as she prepares for a week filled with fun and activities away from the hustle and bustle of home. She also went to her first Young Carers meeting this week and seemed to settle in really well. There are some other girls the same age as G, including one from her school, who have just started too and she’s looking forward to an afternoon at a local trampoline park during the Easter holidays. Watch this space for more of an update once she’s back and has shared all the news with me!
Easter – Preparations are sorted, food trials are planned, eggs have been bought and I’m looking forward to a peaceful family weekend at home.
Happy Easter!
It will come as no great surprise to anyone who knows us when I say that M is something of a daredevil. A true speed demon who loves nothing more than racing around at breakneck speed, sometimes with a frightening lack of regard for his own well-being or my nerves. I think his attitude to life could well be described as “why do anything at walking pace when you can run?” He’s always been the same and mastered climbing out of his cot and climbing up anything to hand (think window-sills, wardrobes and shelving units) from an early age. It was something of a shock when he swept into our lives like a whirlwind, especially after 2 peaceful years with G, who took a much more relaxed approach to just about everything in her early years.
Despite M’s continuing love of climbing, which now includes any tree he can get a foothold on, and his passion for being constantly on the go even until the wee small hours, he has struggled to come to grips with the more mechanical methods of moving around. His obvious clumsiness as a toddler and unquestionable difficulties in balancing in gymnastics meant that it came as no great surprise when a few years later he was finally diagnosed with dyspraxia and dyslexia. M didn’t particularly struggle with his hand-eye co-ordination, in fact his nursery commented on how impressed they were with his tennis skills at age 3, but fine motor skills, upper body strength and balance have all taken a lot longer to achieve and are things he continues to work on both at home and in school. 
It took a little longer for him to become confident on his scooter, but his determination to succeed on a 2-wheel one, rather than the 3-wheel “easier” option, paid off and earlier this year he saved up enough money to buy himself the new one he’d been eyeing up in the Argos catalogue since last Christmas.
However, the one thing that had continued to defeat him was successfully riding his bike without stabilisers. For years, M has been telling us that all we needed to do was arrange a return visit to Canada so Grandpa could teach him how to ride his bike, just as he had G and the rest of their cousins; and there was little we could do to persuade him that he could actually learn at home. Despite M’s belief that Canada and Grandpa were the key to his success, we’ve continued to encourage him to practice at home and had even attempted removing the stabilisers a couple of times in an attempt to push him into giving it his all, but to no avail. 
When M had his NG-tube placed at the start of this year, he was initially a little more cautious about all things even vaguely adventurous and after a couple of failed attempts on his bike, it was relegated to a dusty corner of the garage to gather cobwebs.
I’m not quite sure what changed over the summer, but something obviously did. It may have been seeing G and Mike head out on some Saturday afternoon bike-rides, whilst he and I played together at home; it could have been his increasing belief that he can do anything he wants with his tube in place; and without a doubt, his improved balance that is so clearly evident as he scoots around and attempts trick-jumps on his scooter also played a part; but a few weeks ago he finally found the courage to take that last step. It came as a something of a surprise and was his response to my somewhat flippant comment one afternoon. He was chatting away to me as I was pulling the washing from the machine in our garage and talking about Mike’s need to tidy up in there. I told him that in terms of sorting out their outdoor toys, maybe we should get rid of his bike as it was just cluttering up the corner and could be put to better use by someone else. He took it as a personal challenge:
“Ok Mummy, I’m going to get on my bike and ride it now!“
and with that comment, on he jumped and wobbled his way out onto the driveway, with his toes barely touching the ground.
I watched from the kitchen door as M persevered to overcome this challenge that has been his nemesis for so many years. There was a look of absolute determination etched into his brow and he just kept on going until, with G by his side cheering him on, he finally managed to put both feet to the pedals and rode the length of our driveway. Elated with his success, both children shouted out in triumph, summoning Mike and me to watch in amazement as M grew in confidence in front of our eyes and completed his victory lap several times over. Since that day he’s improved in leaps and bounds, with his bike being the first thing he pulls out as soon as he gets home from
school for a few bumpy trips around the garden. We always knew that his premature arrival in the world with the dyspraxia added on top would mean he might take a little longer to master certain skills, but that he would get there in the end; and we were proved right that his refusal to be beaten by anything would eventually lead to an even sweeter success when we least expected it.
Along with the rain, wind and grey skies, November also brings with it the star-studded evening of light entertainment that is BBC’s Children in Need. Last year they launched the theme of “Be a Hero” for the event and my pair decided to dress as their personal heroes of Princess Leia and M’s gastro consultant at GOSH. This year, the dressing up part was a little easier to achieve – G headed off to school in her own wardrobe selection and M wore his “Super Tubie” top as we really couldn’t think of any better superhero for him to represent. You might think that this meant I escaped lightly for this year’s celebrations, but for those of you who know me, or follow me on FB, you will be well aware that my youngest actually had very different ideas about how we should spend the night before the big day itself, and what a long night it turned out to be!
His school decided to hold a “Great Children-in-Need Bake-off” competition as part of their fundraising efforts and naturally M was keen to take part. His first step was to decide what he wanted his cake to look like and eventually settled on cupcakes rather than one big cake as they would be easier to sell as part of the school cake sale after the competition was judged. Instead of decorating a dozen individual cupcakes, 
M wanted to use them to create Pudsey Bear’s face as best he could. Design done, Wednesday evening saw M whipping up the cake batter with a little supervision from me and the resulting 24 perfectly baked M-friendly cupcakes were left to cool overnight before he tackled the big job of the icing.
One evening to ice to perfection might sound like more than enough time, but when you take into consideration the after-school archery club requiring late pick-up, the long-awaited ‘flu vaccination appointment, the unavoidable homework and the much-needed dinner, you’ll begin to understand why we couldn’t get started until close to 6.30pm. Of course, having baked cakes that he could eat, M was keen to ice with safe icing too, so my first job was to help him make enough coconut oil icing, tinted a rather fetching Pudsey Bear yellow, to cover them all. 
We had already made a simple cardboard frame in the shape of Pudsey’s head to hold the cupcakes securely and,having fitted 10 cupcakes neatly into place, M got started on the icing.
It was his first attempt with an icing bag and I have to say I was impressed. M handled the bag and nozzle like a pro and did what I’d consider to be a really good job for his very first go. Watching him I could see how much his motor skills have improved since he was first diagnosed with dyspraxia and he actually made a relatively fiddly task seem remarkably easy. Yellow icing piped, next came the task of rolling out and shaping the other colours to make Pudsey’s spotted bandage and facial features. He tweaked and adjusted until he was finally satisfied with the end result and I have to say it was a job well done. Whilst he couldn’t quite eat all of the cakes, he could eat those covered just with the yellow icing – the ears! – and for the first time in a long time, M knew he’d be able to buy a cake at the school cake sale!
Now, for most people that would be a great place to stop; but oh no, not in our slightly mad household. Whilst we’d been browsing cookery books and the internet for ideas for his final cake design, M had spotted some Pudsey Bear cake pops and was keen to see if we could make some of those in a M-friendly version too. Cue some hurried reading on my part accompanied by much scratching of my head as I tried to work out a recipe that didn’t involve chocolate in some shape or form. I couldn’t find a single chocolate-free cake pop recipe, so did the next best thing and came up with my own.
I crumbled 8 cupcakes into a bowl and was delighted to see that the grated apple and pear in the cake mix gave enough moisture to form balls. M cut up some drinking straws as I carefully moulded our cake balls and stuck them to the sticks to create the lollipop shape. My full recipe is here, but let’s just say it took multiple moves between table and freezer as well as some much-needed help from all family members on hand to achieve the final look. The ones M decorated for school were not safe for him to try as we ended up using fondant icing, but we did try a few attempts with the coconut oil icing and I reckon with a few more tries, we might have those sussed.
It turned out to be a later night than planned, but M ended up with 2 entries to the school competition he could be proud of and was delighted that nearly all of his cakes sold at the fundraiser on Friday.
In barely the blink of an eye, the summer holidays have disappeared amidst a blur of activities, work and holidays and as we say hello to October and the occasional pumpkin spice latte, we’ve already put the first month of the new school year behind us. This year September has been a little different to most with G moving up to her secondary school and M heading into Year 5 and all the new responsibilities that have accompanied both those events. It’s been a month of mixed emotions as the realisation that my babies are no longer that has hit. They’re growing up fast and whilst it’s been wonderful to see them stepping out with a new-found confidence, there’s been the inevitable tug on my heartstrings as I’ve realised that we’ve moved on to the next stage of parenting, especially when it comes to our little Miss.
For G, she seems to has quite literally grown up over the summer holidays and now stands a good 2 inches or so taller than her closest friend, whilst developing a new sense of independence too. Every morning I drop her at the local corner shop, where she meets up with a couple of friends for the walk to school. They leave laughing and chatting and seem to pick up various classmates and friends along the way. She’s loving all that her secondary school has to offer, even the drip-feed of homework on a regular basis and is fast learning the importance of being organised and keeping track of her things when there’s no peg or drawer in which to abandon her belongings. Every afternoon she meets M and me at our agreed meeting place, strategically positioned between the 2 schools and is keen to find out how M’s day has been as well as sharing parts of her own.
And every evening, once she’s tackled her homework and played outside with M, G spends time helping prepare her packed lunch for the next day and chats away with either Mike or me in the kitchen, giving us precious insights into how things are going as we prepare M’s feed or dinner or sometimes both. Some evenings she’s tired and emotional and a little worn down by the events and demands of the day, but on others she’s buzzing with excitement about what she has learned and the things she has done. I’m so proud that she’s choosing to tackle some of the extended assignments she’s been given in class and her latest effort, to write about why she’d like to have lunch with author, Huw Powell, reaped a much-deserved reward at the start of the week when she and 5 other pupils were selected to actually have lunch with the author himself. It’s wonderful to see her blossom so much in her new environment and I can’t wait to see what the year ahead has in store for her.
M has similarly settled well into his new class and is enjoying being back at school, although he’s not such a fan of the increased homework load that Year 5 has brought with it. He struggled on his first day back, sorely missing G’s reassuring presence at the Junior school with him, but he has soon got used to the new reality and looks forward to meeting up with her every day after school. 
Despite the hopes and original plans of our gastro team at GOSH, M’s NG-tube is still in place and seems likely to be so for the foreseeable future. His friends continue to take it fully in their stride and are happy to help him remember to bring his feeding pump home at the end of each day, something he still struggles to do even after 9 months of having it in place. We’re not 100% sure of all the challenges that this next school year will bring for M in terms of his health, but we know without doubt that there will be some and are glad to still have our wonderful school and staff supporting him each step of the way.
Searching for an answer
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Everyone with diabetes deserves to love and look after their body in a way that works for them.
offering a positive, common-sense approach for daily life
& other silly allergies (or how to live with a food allergic child)
My world, its ups and downs
Surviving parenting three boys, one with Type 1 Diabetes.
It's ok to be different.
Because motherhood isn't always rosy
7 years to diagnosis 