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2021: Winners – 7Y2D COVID-19 Diaries Weeks 61 & 62

2021: Vaccine Update – 7Y2D COVID-19 Diaries Week 50

I’m definitely one for stretching out celebrations as long as possible, hence the Christmas lights are still up inside and outside of the house as well as the Valentine’s cards and my birthday cards from last week, and with M’s 15th birthday fast looming this is definitely a busy time of year for celebrating, but I’m thrilled to be able to add another celebration into the mix this week – and that’s that I’m finally having my first COVID vaccine tomorrow.

I’ve been incredibly lucky in that our local GP practice has kept their website and social media accounts updated with their plans for the vaccination rollout and so I’ve known for a couple of weeks that they had chosen to leapfrog Group 5 as those individuals could book appointments online at one of the mass vaccination centres and instead were going to focus on working their way through the 3,000+ of us in Group 6. I was rather hoping for an extra-special birthday present and whilst I didn’t receive the vaccine itself, I did get a text inviting me to book my appointment for this week.

After 50 weeks of spending very little time with anyone outside of our immediate household and not venturing much further that the 8 miles or so to my office on the odd occasion, it is extremely encouraging and exciting to finally be going forward with a positive step towards being able to widen up my circle. Of course, we will continue to follow the guidance given about wearing masks and social distancing, but it does feel we’re going in the right direction at long last. G and M return to school next week which naturally comes with its own concerns, but I’ve been clear that I expect them to continue with the precautions we put in place back in September and both have also said they will masks as needed whilst there.

I don’t know how my body will react to the vaccine, especially knowing that my T1D is likely to bring some additional tricks to the party given just about anything can impact it and not always in the ways you’d expect it to. Keep an eye on my Facebook and Twitter feeds over the next few days as I will be attempting to give regular updates following my jab, assuming that there’s much of anything to say other than that it’s done!

Food Boxes – 7Y2D COVID-19 Diaries Week 8

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One of the many things that have changed hugely during lockdown for everyone has been the process of buying food and this has been particularly challenging for those families living with food allergies. In the initial rush to panic buy the bare essentials – loo roll, pasta and flour to name but a few – those individuals who needed to buy freefrom foods found their usually more plentiful supplies being depleted by others who chose to buy allergy-friendly when their “normal” stocks ran out.

Thanks to my hoarding tendencies and the regular “big” shop that I do twice a month, we had enough safe milk, bread, flour and pasta to keep us going for several weeks and initially had no problems in buying more rice milk as that seemed to be the one dairy-free milk alternative that no-one else wanted. However, for a family who goes through around 40 litres of rice milk a month, the restrictions introduced where we could only buy 3 of any product proved to be a little more challenging in keeping our cupboards full. G and M have been brilliant at switching to drinking water, or occasionally squash, during the day, rather than the huge quantities of milk that they both prefer, which has certainly helped to eke out the supplies we have had at home.

Its been a case of not only trying to find the food you need and can eat, but also how you actually do your regular food shop. This has been especially true for our household as my T1D places me squarely on the clinically vulnerable list and as such, the advice has been clear that I should be staying at home. Fortunately for us, we already do a lot of our food shopping online, using our local food co-operative for our fresh fruit, veg and meat as well as Sainsburys and Ocado for our store cupboard essentials and, most importantly, the more specialised foods we need to keep G and M healthy and safe when they eat. The increased need for home delivery caused huge problems for many people at the start of the coronavirus crisis, but as we all settled into our new sense of normal, supermarkets and other food suppliers rose to the challenge of how to help more people in any way that they could and found a solution by introducing a variety of food boxes.

Now this will come as no surprise to anyone in the allergy community, but it took a little longer for these same organisations to realise that there was a whole group they were forgetting to cater for and now there’s a reasonable mix of freefrom boxes available too, though they do predominantly focus on the gluten-free market as far as I can see. We have ordered 3 different food boxes over the last few weeks and I thought I’d share our experience and opinion of each in turn:

Morrisons Food box (starting from £35) – one of the first food boxes to become available as far as I am aware and as the weeks have gone on, they have expanded their offering beyond the basic meat or vegetarian essentials boxes they started with. I ordered a meat essentials box, which arrived promptly and was well-packaged, including ice packs to keep the fresh produce chilled until I had time to put the food away. Our box contained, as it said, the essentials needed to keep us eating well: milk, bread, pitta breads, pasta, butter, cheese, meats, fruit, vegetables,tinned goods and the much-need pack of loo rolls were all included in it. Whilst it wasn’t the solution we needed in terms of safe foods for the children, it kept Mike and I going for another week at least and supplemented well what we already had in the house.

Marks and Spencer Food box (starting from £15) – with Easter coming so quickly after the start of lockdown, my Mum had managed to buy dairy- and soya-free chocolate for G and M, but apologised to me that she hadn’t had time to buy an Easter egg for me or Mike. Instead, she sent us a Marks & Spencer Fruit box and what a wonderful treat it was when it arrived. Again, it was a well-packaged delivery and contained a great variety of fruits to satisfy all tastes within the family. Whilst we order what I would term as our basic fruits every week (apples, bananas, oranges), the box also contained some more exotic fruits which, to put it simply, brightened my day. We received a plentiful supply of those regular fruits, which are always needed as we’re living with a 14 year old who lives for his regular smoothies and has a growing appetite at the moment, but I enjoyed the fresh mango and pineapple as part of my breakfast or lunch for a few days too.

Doves Farm Gluten-free Food box (£25) – this was an unexpected find, but a much welcome one. Surprisingly, I hadn’t seen anything mentioned about it through my usual allergy community social media platforms, but rather spotted it as a photo and post by an old friend on their FB feed. Discovering a box that not only catered amazingly for the gluten-free needs of our household, but also included 3 bags of safe flour was amazing and I couldn’t wait for this one to arrive on our doorstep. Add in the pancake batter mix, boxes of cereal and 8 delicious cereal bars that are safe for both children, there really was nothing to complain about. It was also great to find a new safe snack for M and I will definitely be looking to buy the apricot freee oat bars again.

Allergy Blog Awards UK 2017

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“Why not write a blog post about your success?” they said.

“Yes, why not?” I replied.

“Ask your readers, family, friends, colleagues, social media followers to vote for you“

and I nodded my head in agreement.

“They might even promote you through their own social media channels!“

“Fantastic!” I thought.

And then came the task of sitting down and putting pen to paper and doing that very un-British thing of talking about my success to, well you know, to other people.

I am incredibly flattered and proud to have been nominated in 2 of this year’s Allergy Blog Awards UK‘s categories, the Parent Allergy Blog and Allergy Blog of the Year and would like to thank anyone who took the time and effort to put my blog forward for these awards. I am up against some wonderful other bloggers who have become friends over the last few years and they are definitely strong contenders for these awards, but I’m hoping that with the help and support of my readers, and maybe even your friends, I might make the shortlist for one category at the very least.

I started my blog to share the highs and lows of life with EGID and multiple allergies, not least the road we travelled to reach M’s diagnosis. I didn’t want any other parent to feel as isolated as Mike and I did when we were trying to convince the medics that there was something wrong as well as letting other families know that they really aren’t on their own with their battles. Since my first post in 2013, my blog has morphed into more than just a commentary on a child with a chronic illness, but looks at all aspects of family life from birthdays and days out to schooling and hospital visits. Without a doubt, I will always find the time to keep writing because each and every day brings a new challenge to overcome or achievement to celebrate and it gives me a form of release that helps maintain a level of sanity at all times.

So what can you do? – and yes this really is the trickiest bit to write. You could click on this link here and cast your vote in either of the categories I’ve mentioned above. Just scroll through the lists until you find 7yearstodiagnosis and click to make your selection. You could also share this through your social media channels or email contacts to ask friends to add their votes too. I really appreciate each and every vote cast between now and 30th November 2016, and will hopefully be able to share whether I have successfully made it through to the next stage or not.

Kids’ eye view of Lisbon

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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.

The Italian Job

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Sometimes you just need some time off; a week away from it all; an opportunity to have a break from the everyday, to just rest and relax and be. The thing is that that is hard enough to achieve when you’re a parent and near on impossible when you’re a special needs parent. The stress of leaving your chronically ill child with someone else, even when accompanied by a small novel’s worth of detailed instructions about what to do in every possible and conceivable situation, threatens to overwhelm and can seemingly be insurmountable for a day or two, let alone more than that. Mike and I are lucky that my Mum lives close enough to give us some nights off during school holidays, but those days usually mean longer hours at work for me as I attempt to make up time missed for hospital appointments with M and include only the occasional trip out to the cinema or for dinner somewhere where we aren’t tied to the essentials of chicken, rice and cucumber of our everyday menus.

Last December, in fact the day before M was admitted to GOSH for those disastrous food challenges, I received a Facebook message out of the blue from one of my fellow FABED Mums:

“Is that you that has won a trip to Italy with schar? Saw Twitter post? Congratulations x”

and have to confess that at that point I had absolutely no idea what she was talking about! A quick unscheduled peek at my Twitter feed and a long look at my e-mails later, I was stunned to learn that she was indeed right and I had won a 4-night stay in Italy thanks to gluten-free producer Dr Schar and the Allergy and Free from Show, Liverpool. It has taken a little while to put all the necessary pieces in place, but finally, last week, 6 full months since I first received that message, Mike and I left G and M in my Mum’s more than capable hands and jetted off for a much-needed break from it all.

Getting to that point did take some effort and there were last-minute wobbles before we finally left. It took an unbelievable amount of time to confirm the dates for our hotel stay due to the relaxed attitude of the Italian hotel staff and our flights were researched and scheduled by me once I knew the preferred airports for us to travel to and from. Two nights before we left, Mike questioned whether we really could go abroad given M’s current ill-health, but we trust my Mum implicitly and knew we needed to take some time for ourselves. That’s something that my Mum supported fully as she knows that reality as well as we do due to my T1D diagnosis at age 9. The truth is that you should never under-estimate the impact of a sick child on a marriage: the focus naturally shifts from each other to that child and home life inevitably revolves around what they need in every waking moment. In our household, those needs have not just been during the day, but at nighttime too as M’s sleep issues have been an ongoing problem that we continue to struggle with and every time we seem to be making some headway with it, something happens to set us back to where we were before. His broken leg has been no exception and has added to that regression as it has seen us playing musical beds with G moving to M’s cabin bed and Mike to G’s room to give M the comfort he needed to enable him to sleep in the weeks following the accident. The physical strain of looking after M with his broken leg has taken its toll on me, leaving me exhausted and Mike and I have had little time to spend with each other without interruption.

Our plane is the one on the left, which looked tiny when seen next to the Easyjet one also waiting for passengers

Last Monday passed in something of a blur and proved to be a long day of travelling with more than its fair share of minor hiccups along the way, just to keep us on our toes. We were up at 3.30am to reach our regional airport before a 6.30am flight to Munich, followed by a couple of hours waiting at the airport before our shuttle bus arrived. Then there was the 30 minutes of pure stress as we failed to connect with the shuttle bus due to the unclear instructions as to where to wait that were written on the booking form and my tears of panic as Mike desperately tried to find a helpful German airport worker to help him communicate with the bus company, before all was finally resolved and the driver turned around to pick us up.

The following 4.5 hours in a minibus without functioning air-conditioning and unable to communicate with said driver due to my lack of German and his lack of English was interesting, though we drove through some amazing countryside and realised that 4 countries in 1 day (UK, Germany, Austria and Italy) was a record even for us. We finally reached Lana, our Italian destination, only to discover that the cable car to the hotel – the only way to reach it – had broken down and we were destined to wait for an indeterminate amount of time as the statement that “..it might be 5 minutes, it could be 30…” was accompanied by an unconcerned shrug. But, we got there in the end and, having reached what is an amazing resort, it was, without a doubt, all worth it in the end.

NEAW 2016 – #MoreThanFoodAllergies

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The headline in our local paper for this year’s #NEAW focuses once again on the allergies

I share a frustration with Michelle, one of the lovely co-founders of the FABED, that all too often people living outside of the EGID world get drawn into the food allergies side of this illness and don’t really understand that that is just a small part of a much bigger picture. I can understand why the focus so often falls on it as it’s the bit that people think they understand and can relate to the most. After all, just about everyone knows someone, be it their next-door neighbour, the family down the street or Great Aunt Joan in Australia, who has an allergy. They often feel that that acquaintance, however remote, gives them an insight into what life must be like when your every waking moment is ruled by their presence and I’m all for that belief encouraging them to engage me in conversation about it. Added to that, so much of our social life revolves around food, a fact that isn’t a revelation to me as I’ve discussed it before on my blog. In the last week alone we’ve had to survive the “Second Sunday” breakfast held at our church, sweets brought into school to celebrate birthdays and M’s class cake sale to raise funds for classroom resources. We managed them all in our own way, from arriving late and avoiding the table of food in the church hall, to M’s trusty swap box, which has finally been refilled and returned to his teacher and the gentle request to the TA that the class cakes be moved to somewhere other than next to M’s stationary wheelchair for the day.

Of course, I obviously can’t ignore the fact that my blog focuses a lot on the impact M’s complex food allergies has on our everyday life. So much of my time and energy is spent researching, adapting and learning more about how to feed him varied meals whilst coping with such a restricted diet that food allergies undeniably rule my kitchen. As a fellow EGID Mum recently posted, every single aspect of our children’s lives are affected by food, no matter how many food allergies they are dealing with. Everything has to be planned and thought about, there can be no leaving things to chance and there’s rarely an opportunity to be completely spontaneous. At home, at school, going out for meals, tea at a friend’s house, family gatherings, holidays, hospital admissions, trick or treating, birthday parties, Christmas, Easter, the list is endless and all-consuming. There’s also unquestionable irony in the fact that we as a family will be “eating like M” to draw attention to the eosinophil awareness week. The reason? I know our restricted diets will allow us to engage with others who will be intrigued by the limitations and in turn that will enable us to share the EGID story too.

However, despite the truths above, it’s really important to get the message out there than EGID is about more than food allergies, a whole lot more. Whilst it’s common for people with ‪EGID to have food allergies, those with allergies do not always develop EGID. At the risk of repeating myself, EGID is, as I wrote for last year’s #NEAW, about “…the unexplained joint aches, the never-ending tummy cramps, the relentless feelings of nausea or reflux whenever you eat. The dark shadows under the eyes, the manic mood swings, the overwhelming lethargy, or the inability to fall asleep and stay that way. The damaged bowel, the fear of not being near enough to a toilet whenever you need one, or knowing that you’ll never get there in time anyway. The fear of your friends making fun of your allergies or finding out that you’re still wearing a pull-up because your bowel can’t be relied on when you most need it to. The daily medicines, restricted diets and the feeding tubes. The chronic pain that can reduce you to tears, yet you don’t complain because nothing helps, even when it’s at its worst.

It’s about getting used to these things as being normal, or not even realising they’re not.”

We’re marking our 4th National Eosinophil Awareness Week and despite all our best efforts, I still find myself spending a lot of time explaining that there is more to M than his food allergies. This year is a particularly tough one as there is a lot of uncertainty and discussion in the medical community about the validity of EGID as a diagnosis. Hospitals and their consultants are questioning whether EGID is really anything more than complicated food allergies, but they are failing to talk, and more importantly to listen, to the families who are living with it on a daily basis, who are surviving those symptoms I’ve mentioned above and who are having to battle to get their voices heard. Some parents have found themselves in a situation where treatment has been removed suddenly because the veracity of their child’s EGID diagnosis is under review and are left watching their loved ones spiralling back into chronic ill-health whilst the medics argue over whether EGID exists. I can’t predict what the next 12 months will bring for those of us living with the presence of EGID in our families, but I do know, without a shadow of a doubt, that we will all continue to fight for ongoing good health and that every battle won is a huge success.

EGID is about #morethanfoodallergies and that’s a message the world needs to hear.

Just a reminder that as well as raising awareness of EGID this week, we are also fundraising for Over The Wall Serious Fun camps. If you are able to donate, even a small amount, that donation will make a big difference to children like M and G, who benefit massively from these camps. You can donate via my Just Giving page or the link on the side of this page. Thank you!

The 12 day countdown…

Reaching out

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I am, without a doubt, a firm believer that things happen for a reason and that the lessons I’ve learned, the situations we’ve survived and the successes we’ve fought for and achieved over the last few years have given me an understanding and empathy that nothing else could have done in the same way. I have discovered within myself a strength I didn’t know was lurking, which has seen me through some of the darkest days I’ve ever had to face. My Mum and Aunt love to remind me I come from a line of strong women and these challenges have helped me grow even stronger. The struggles I’ve had to face have enabled me to reach out and bring some comfort and reassurance and offer an ear always ready to listen when others have most needed it. What’s more, not only can I speak from a shared experience and the common bond of parenting a child with a chronic illness, but I want to give support when it’s most needed. That incomparable insight is what almost makes the challenges of M’s health worthwhile, for whilst I would give anything for him not to have to live with a rare illness like EC, it has, without a doubt, given me a compassion and understanding beyond what I would otherwise have known.

When setting up my blog 3 years ago, part of the process was to pen something that would honestly capture who I am and the reasons behind my decision to start it to include in my “About me” page. I won’t deny that this blog has undoubtedly become an inexpensive form of therapy for me, allowing me to explore my innermost thoughts and feelings about the chronic illness that has dominated so much of the last 10 years of our lives as well as sharing our experiences of it; but that wasn’t my raison d’être. What I wanted most was to be able to reach out to others who were facing similar challenges “…if I am able to speak to the heart of even one parent who is going through the same turmoils, then I know the hard work will have been worth it…” In the months since I first wrote down that somewhat ambitious desire, I have received the occasional e-mail telling me that what I’ve written has really resonated with another parent, responses that have meant so much as they acknowledge an achievement of my goal above and beyond what I originally wanted.

Knowing that I have received those messages you could easily assume that I might consider it a job well done and just leave it there, but over the last few weeks I have received more messages of encouragement than I ever anticipated and have found myself in the position of being able to offer support and advice when I least expected it. Those opportunities have drawn on the many facets of my life experiences, from seeking a diagnosis of EC to coping with a new diagnosis of T1D and from facing the daunting reality of tube-feeding to the challenge of switching a child to a gluten-free diet. What is even more amazing is that the people I’ve been talking to have been a mix too: Mums from school, friends met through support groups and those just looking for reassurance from someone who has already walked the path they now find themselves on. I don’t claim to be an expert in any of these things, but I am an expert in my child and our experiences and can offer an insight into how we have coped and the tips I’ve picked up along the way. When we started out on our search for a diagnosis for M, and then again when we made the decision to move to tube-feeding, the information readily available was scant and it took dedicated research and hours of reading, and re-reading, medical journals and the such-like to even begin to understand what we were facing. It was thanks to on-line forums such as FABED and PINNT and their members that we began to truly comprehend the complexities of life with a chronically ill child. My blog has simply been an effective way to put all of our experiences into one place, hopefully with some useful pointers for others in the same shoes and, by doing that, to create my very own, very personal resource.

What’s even better in my opinion is that my passion to reach out and help others has been adopted by both children too. G has developed an empathy and understanding that extends out from the home into the classroom and wider world, and which has been commented on in recent weeks by her teachers and the volunteers at camp. She shows an amazing amount of tolerance towards the challenging behaviours and differing views of her peers and is always prepared to listen and respect what they have to say, whilst standing her ground with her own opinions. G is also sympathetic to those who are in the same position of having a sibling with a chronic illness and can fully understand the frustrations that the sometimes difficult behaviours of those siblings can cause. Whilst sometimes reluctant to deal with M at home, she never hesitates to offer help to those around her when it’s needed.

In similar fashion, M has developed a compassion that I can only attribute to the reality of a life altered beyond recognition by EC and multiple food allergies. At a recent birthday party, one of his friends was confined to a wheelchair due to an ankle injury and M immediately stepped in to make sure this friend could be as involved as possible, despite the constraints of the wheelchair. He took the time to push his friend around the garden so he could join in the activities and toasted marshmallows on the camp-fire for him, even though he wasn’t able to eat them himself. Likewise, another good friend has just been switched to a gluten-free diet and M has made sure he sits with him during lunchtimes at school to discuss the different foods that C has been trying. The parent of this friend rocked my world nearly 3 years ago by inviting M home for tea and being willing to cook to suit his complicated needs, not just that one time, but numerous times since. It feels rather wonderful to know that my boy is now returning that favour and giving this friend the chance to vent about his new diet.

I don’t know what the next few months will bring and the opportunities to offer support may start to dwindle, but there’s one thing I know for sure, as a family we will all continue to reach out and help out whenever we can.

A pain scale for every season

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My last blog post about M’s interpretation of his pain and how important it is for his medical team to understand him sparked a series of interesting conversations both on-line and in real life about just how effective pain scales can be for those who suffer from chronic pain. So many shared their own experiences of how their children express their pain and adapt to a new “normal” based on what their average day looks like and the symptoms they assume to be something that everyone has because they’ve never learned any different. What was most fascinating was the array of ideas and examples of the different pain charts out there that were sent to me and I thought I’d share some of them with you:

G’s godmother shared this pain scale image with me and I love the wording that is attached to it as it sums up to a tee how M has described his levels of pain over the years. From the magical unicorn of no pain at all which happens occasionally, to the breaking point of inconsolable sobbing and unbearable pain that little can ease, I’ve seen M pass through every stage of this chart on all too regular a basis. I doubt the colours, images or facial expressions would appeal overly to him, but it helps to clearly explain how he copes to those who need to know.

A fellow FABED Mum sent me this one saying, “It’s the only one that’s ever worked – I think it’s because apart from the last face, they aren’t very emotional, so she is prepared to admit to them. There is a Lego one, but the emotions depicted on the faces is *extreme* – I think it’s more for a paediatric A&E type thing. So a kid with a normal pain/health experience would probably find it helpful, but the level of distress the pain correlates to isn’t much help for someone who has made this into their normal…I do think these pictorial pain scales are good – pointing is so much easier than talking, to start the process. R finds the words ‘annoying/uncomfortable/miserable/horrible’ very helpful and she even sometimes uses them without prompting.” The recent release of the latest “Peanuts” film will no doubt lend added appeal to this Charlie Brown themed scale.

This third one I discovered through Twitter and was posted up by @2tubies, whose 6-year old son helped make his own pain chart for the school environment with the help of the school SENCo and his Mum. They used Lego figurines to depict how he might be feeling and offered some easy solutions for his symptoms. This solution-based approach is one that I find works well with M and have started using it more and more over the years. I rarely give M the option of staying home from school when he’s feeling unwell, but will instead list out those solutions I think might ease not only his pain, but also the whirlwind of emotions that is so frequently tied into what he’s feeling on a physical level. Whilst he was still being tube-fed, I would always start with the offer to slow down or even stop his pump for a limited amount of time and then followed that up with pain relief or a hot water bottle. My final question has always been what M thinks will help him the most and given he has a clear idea of what I’m suggesting, then we have always been able to find a solution that works for us both. Whilst giving these choices verbally works well at home, I imagine that presenting them in a pictorial fashion would make great sense in the school setting.

Of course, the ideas behind these pain scales can easily be extended to cover other physical and emotional needs that our children may have when outside of the home. When G was younger and dealing with her own health challenges, one of her fantastic teachers introduced the concept of a “magic marble”. We had discussed the use of a password, a word that was random enough to not be misinterpreted as a genuine contribution to a conversation and which would indicate that G needed help, but she was at an age when she was reluctant to vocalise her needs and the use of “rhinoceros” actually stuck out like a sore thumb most of the time. Instead, G kept her marble somewhere safe and easily accessible at all times, be that her pocket, bag, drawer or table, and just needed to give it to her teacher or place it on the teacher’s desk to indicate she needed some support. No other child was aware of the significance behind this marble and consequently didn’t bat an eyelid if they spotted her handing it over, assuming that she’d probably just picked it up and was handing it in. It was an easy way for G to communicate her needs about a sensitive subject and gave her a sense of ownership over a situation that was otherwise lacking her control.

At G’s secondary school, they have included traffic light coloured pages in the back of the pupils’ planners and the children are encouraged to use them by putting the relevant colour facing up on the desk if they need some help during a lesson, but are too worried or nervous to ask. For some children, a “traffic lights” approach using counters or cards can also be effectively used to indicate how they are feeling in any given situation, where red can indicate their sense of losing control or not coping with the environment surrounding them. The opportunity to be tactile with the counters may also help children with sensory issues order their thoughts and be more able to express them when asked. Even if the child is not able to share what’s troubling them, a clear plan of how the teacher or adult in charge should respond to each colour will change that child’s perceptions and experiences away from home. Similarly, M’s school uses a “Fist to 5” approach to their work, where fist indicates a lack of understanding and the need for some help, and 5 means they are confident and happy to carry on on their own.

Whatever the system used, these scales encourage a child to communicate with the outside world about how they are feeling and coping, even when they don’t have the words to express it.