Author Archives: bluesingingdragon

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About bluesingingdragon

Mum to an EGID son and a food allergy daughter. Full-time accountant and supporter of Over The Wall.

“It’s school kids, but not as you know it” – 7Y2D COVID-19 Diaries Week 2

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Two weeks into the UK-wide COVID-19 lockdown and we are all slowly adjusting to life as we currently know it. Everything was turned on its head a bit this week, when Mike was furloughed from his job in line with the government’s job retention scheme. This didn’t come as a particular surprise to us as so many businesses are having to consider carefully how they can best weather this storm, but it does mean that the dynamics in the house have changed as Mike adjusts to both life as a house-husband and the nuances of how I like my day to unfold when at work.

G and M are currently doing okay with the sudden and continued disruption to their daily routines, though the end of the week saw tempers fraying a little as they spend almost every waking moment in much closer proximity to each other than they’re used to and with no real end in sight. Our dining room has become their school room every morning until lunchtime, when they can then close the door on their virtual lessons for another day. Their school work is more challenging not just for both of them, but also for me as I try to juggle numerous conference calls, zoom meetings and my own workload with their needs of support and guidance with the work being set for them online.

G is capable of being reasonably independent with her learning and has faithfully put in 2-3 hours every morning on continuing her GCSE revision timetable. By the end of the week, school had added work plans to prepare the Year 11 students for their A-levels due to start in September, so, having asked me to buy the pyschology textbook for her, G will be beginning the introductory tasks set to prepare her for those courses.

M similarly is working really hard at the lessons and homework being set for him, but is inevitably finding the quantity of different notifications he receives overwhelming to cope with on a daily basis. We have talked about the best way for him to work through everything that has been set and agreed that a balance between those tasks with the earliest due date and those he’s most interested in is the best way to go. He is completing the online tests and either uploading or emailing his completed work for his teachers to check and review. I have been impressed with his attitude to approaching his school work and he is keen to not miss out on his learning by not completing what he needs to do.

Their afternoons are spent with a mix of outside exercise and some much-needed fresh air, alongside spending time on their electronic devices. There’s no question that they are spending more time in front of a screen than we would normally allow, but their phones, and even M’s PS4, have become invaluable tools for staying in touch with their friends. Whilst G is happy spending time on her own and exchanging occasional text messages with her closest friends, M very much misses the daily interaction with his school mates. A much-needed gaming session on Friday evening allowed

him time to catch up with a few of them and he was unquestionably happier for it.

I’m not really sure what week 3 will bring for us all. It’s technically the first week of the Easter holidays, but we’ve agreed to keep going with a few hours of schoolwork whilst we’re in the midst of this weird hybrid of school-holiday-home-life. I’ll still be “going to work”, though probably in Mike’s home office now that he’s on furlough and Mike will hopefully complete a few of those jobs that have been lingering on what my wonderful Canadian sister-in-law calls his “honey-do” list.

The 7Y2D COVID-19 Diaries – Week One

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Without a shadow of a doubt, the world as we have known it has changed radically in the first 3 months of 2020. The fast spread of the COVID-19 virus not just through Wuhan, China, but worldwide has shocked us all and we find ourselves living in extraordinary times. Times that go far beyond the much-fabled “interesting times” often quoted as an ancient Chinese curse*. Life will never go back to the way it used to be for most of us, if not all and so we have to search for our normal despite not really knowing when things will start to be more “normal” once again.

Our first week at home was mostly a good one.

G and M continue with their home studies, though some days with more dedication and, let’s be honest, success than others. They’re keeping up with the extra courses they’ve both signed up to as well and we’ve found additional activities to keep them busy. G has been using the Diversity online tutorials to hone some more dance skills thanks to their 20DV website and I’ve signed M up for online tutorials for his bass guitar through Fender. Stagecoach Performing Arts has also provided some at-home online learning videos, which helps break up what can be long days.

My 12 weeks working from home is off to a good start with all finance and banking systems working well on our home wifi. There are daily conference calls with the rest of the senior management, sometimes via Zoom, to review the situation across our charity and track the progression of COVID-19 through both our staff and the individuals we support in our homes. I’ve also scheduled weekly catch-up sessions with the other members of our finance teams to make sure they are all coping okay with their new work situation. Keeping an eye on the mental well-being of all my staff is critical in times like these and they have my phone number to be able to call or WhatsApp whenever they need.

It has taken a new level of cooperation and adaption for us all. Mike is used to working from home on his own. He takes to his study in the morning, may reappear for drinks or food and then disappears again until his day is finished. M and G each have work stations set up in our dining room and manage to avoid conflict by being plugged into their own devices as they study. I have set up on the 1 remaining downstairs in the kitchen, which works brilliantly for me as I have ready access to the kettle, but can prove challenging to the rest of the family when they look to escape to the garden or make their lunch.

The last week has been filled with rainbows, working from home and trying to convince 2 increasingly grumpy teens to keep going with their own home studies…and I think we just about managed to do it all.

*There is no clear evidence that the curse “May you live in interesting times” is in fact either ancient or Chinese. It is purported to have come into more common parlance in the early 1900s, in all likelihood in the UK thanks to Sir Austen Chamberlain, brother of UK PM Sir Neville Chamberlain. You can find a good explanation of this origin here. Chinese or not, it is now widely accepted to mean times of trouble, rather than of peace,

Chasing Rainbows

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There’s no question about it, rainbows hold a special place in most people’s hearts. Whether you believe that they are a symbol of God’s promise to us to never again flood the earth to the Biblical proportions of Noah’s time, or simply a natural phenomenon that occurs when you have the perfect conditions of both sunshine and rain*; most people would agree that they are a wonderful representation of hope and promise to us all.

At what is one of the darkest moment of current times and an experience that few of us have ever even had to contemplate, yet alone live through, the rainbow has become a reminder that there are bright days to come again and that storms don’t last forever. Reportedly starting in Italy, and now spreading worldwide, in much the same manner as COVID-19 though at a much slower pace, households are creating rainbows and putting them on display in a show of solidarity.

In our village, the local FB group has been encouraging families to put their rainbows up and we have enjoyed spotting them when we doing our daily exercise routine. I will rapidly clarify that we are fortunate to live in a relatively small community and have rarely come across anyone else whilst we are out and about. And it’s not just our community that is inviting young people to get involved with sharing these uplifting images. Communities nation- and worldwide are seeing these images spring up and our favourite charity, Over The Wall, launched its first #MondayMayhem today with the challenge to create a rainbow and put it on show.

Never being ones to reject a challenge, and finding it a good alternative to the monotonies of an isolated life, G and M worked together to create their “alternative” rainbow – their teen years apparently wouldn’t allow them to be in anyway typical or predictable – which is now proudly in the spare bedroom window for all who travel the A-road past us to see. There were also some threats to paint one another’s faces rainbow-style when emotions ran a little high, but thankfully we’ve managed to avoid that, at least for a few days.

Have your children or you created a rainbow of your own to bring some inspiration and hope to others in your local area? Have you spotted any that have brightened your day? Please do share them.

*the “perfect” conditions include geometry, raindrops and being in just the right place with just the right refraction of the sunlight. There’s a much better explanation of it all here!

 

What does COVID-19 mean for you

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I find myself in an odd position today. Torn between wanting to try and keep things as normal as possible with my blog posts about life as it is living with chronic illness; and the hard reality that is the current crisis with COVID-19. There is no question in my mind that COVID-19 is impacting all of us in a multitude of ways, so I thought I’d focus this post on what this virus means to us at 7Y2D HQ and how it is affecting each family member right now.

For the children, the biggest change has to be that they are both now home and won’t be at school for the foreseeable. Neither G or M are considered to be particularly high risk for the virus because of their age, but we know from personal experience that M is far more susceptible to catching bugs like this than his peers and his body can and will struggle to cope once he has it. His bout of Aussie ‘flu 2 years ago is too fresh in our memories to want to have to go through anything even vaguely similar again, so we are taking precautions and following the social distancing guidelines as recommended. I find myself once again so glad to live in the countryside and to have access to some beautiful and very quiet walks with little risk of encountering anyone else. We have ventured out both days over the past weekend to make sure we’re getting some much needed exercise and fresh air, and the children even practised a handful of their Stagecoach routines given their classes have all been cancelled.

School has been brilliant and the teachers are setting work to be done at home to make sure that pupils are not absent from all learning in the next few months. There were a few IT hiccups this morning as a large number of the 1300 students plus parents and teachers at school all attempted to access the online learning platform at the same time, but we got there in the end and I managed to print off some of the tasks set to make sure that M in particular has things to do in the coming weeks. His dyslexia centre is also setting up a system for online tutoring and so his 1 hour 1:1 tutoring sessions will restart after the Easter holidays, which is just brilliant.

The impact on G has been far greater. Her GCSEs have been cancelled and she has been told she has a guaranteed place at her school’s sixth form for September. She has also been told that she won’t be back at school until then. We’re really proud of G’s attitude to this as rather than sit back and relax over the coming months, she has instead determined to keep going with the comprehensive and individualised revision plan she was given by school just a couple of weeks ago and look to finish her learning that way. With more clarity still needed about exactly how her final GCSE grades will now be determined, I’ve encouraged her to keep going with the mock papers and practice questions and to submit them to her teachers, so that they have all the evidence they might need of the hard work she is continuing to put in each and every day.

G has also decided to learn BSL (British sign language) through an online course wonderfully being offered free of charge because of COVID-19 and has done her first lesson in that this morning. Learning sign language has been something she’s been interested in for a while and is an area she wishes to explore further as part of her A-level studies next year as she considers dance therapy and non-verbal communication as part of her possible future career plans. Not to be left out, and with a view to his yet-to-be-confirmed GCSE options, M has signed up for a 4-week online photography course which Mike has agreed to do alongside him. He received a digital camera for his birthday and we’re hoping this course, as well as the school enrichment week course he took last summer, will stand him in good stead for September.

My T1D has put me firmly in the ranks of those who are considered vulnerable and therefore at higher risk of both contracting the virus and complications arising from it. Diabetes is not currently on the list of those considered to be extremely vulnerable, which you can find here, and so the advice is to follow the social distancing guidelines, rather than to self-isolate. These days I work for a charity who provides social care and support to adults with learning disabilities, both in homes and in the community, which actually puts me into the key worker category as one of the back office workers needed to keep those services running. I am extremely fortunate therefore that my employer has been supportive of my own health requirements and has enabled me to work from home for not just the next 12 weeks, but for as long as considered necessary. Half of my team also fall into the category and so we are running the office on a skeleton staff basis and have been trialling meetings by both conference and video calls this morning.

Finally Mike, who is probably the easiest one of us all. He has no underlying health conditions that put him at higher risk, but he does have to be careful because of my and M’s chronic illnesses. He already works from home and has a home office set up with just about everything he needs. There will come a time when Mike’s workload will reduce significantly – it’s not quite there yet – as he is a building surveyor and the social distancing and self-isolation rules mean that people are less likely to want him and his colleagues to go into their homes. He is the most able to go out to the shops, although we already regularly shop online with Sainsburys, Ocado and our local food co-operative, so our shopping habits are unlikely to change much if at all, delivery slots permitting.

I hope that you are all finding a way to adapt and cope with this strange new world that is our current reality. I find myself waking each day and wondering about the very surreal situation we all now find ourselves in, not just in the UK but worldwide. This is an experience like no other and there is no doubt that life as we know it will never be the same again.

Stay safe, stay well, stay in touch – but most importantly, STAY AT HOME

Learning to Cook

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A few years ago we encountered some problems when G wanted to learn to cook gluten- and dairy-free recipes in her school cookery classes. Her teacher appeared reluctant to help G learn how to adapt the “normal” recipes to suit her dietary needs and even told her that she would have to bake a normal red velvet cake because baking an allergy-friendly one would require too much work. It was not the most auspicious experience we would have with their school and one that would leave me feeling a little jaded about what might happen when it came time for M to start his round of food technology lessons.

Fortunately, M’s Year 7 teacher was willing to work with us when it came to each of the dishes he would be preparing in class and all in all, it was a positive start to M’s life at secondary school. This year M found himself once more in the cycle of food tech classes and all I could hope was that his Year 9 experience would be as good as his Year 7 one. As luck would have it, his teacher this year was keen to make sure that M could learn how to cook safe food for himself just as his classmates do and encouraged M to adapt every recipe to suit his particular dietary requirements, no hesitation and no fear that it would be too difficult to manage.

Having a teacher that not only helped M learn to cook, but who was also interested to find out more about how and why we made the adaptations we do was a huge boost to M’s confidence. Her attention to detail and preparedness to make sure that the cross-contamination risks of sharing a classroom kitchen and work-spaces with other

13 and 14 year-olds were reduced as much as practicable helped reassure him every week he cooked. M even shared my blog with her as he wanted her to understand more about his condition and see the many recipes that I’ve already adapted to suit his various allergy needs.

From chicken biryani to a prawn stir-fry and chilli con carne to a cheese and potato pasty (although that one wasn’t safe for him), M flexed his cooking muscles and has learned some great new skills that will stand him in good stead in the future. Our thanks have to go to a fantastic teacher who didn’t see M’s food allergies as a barrier to him learning to cook and worked with him to make sure that his health issues don’t stand in the way of achieving whatever he sets his mind to: that’s inclusion at its very best.

Yet more chocolate

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You’d have thought that, given the vast quantities of chocolate that I simply had to taste as part of my stint as one of the FreeFrom Food Awards judges this year, my pretty much non-existant sweet tooth would be more than satisfied until well past Easter and yet, here I am, wanting to share yet more chocolate that we have found over the last few months.

Finding safe chocolate is always something that makes me rejoice and the marketplace is becoming much more populated by great dairy-free products. As a parent, nothing beats being able to buy allergy-friendly Easter eggs or chocolate Advent calendars, or even Christmas selection boxes for your child, especially when that is perhaps something they’ve never been able to to enjoy before, which was certainly the case for both G and M when they were small. These days, thanks to the wonderful Moo-free chocolate, my 2 no longer have to feel quite so different from their friends and can enjoy treats that taste incredible to them. Similarly, it can be incredibly frustrating when many manufacturers don’t take the next step and make those dairy-free treats, soya-free too, something that renders them unsuitable for M.

However, the following 3 products are new discoveries to me and ones that I would definitely recommend to anyone looking for a tasty dairy- and soya-free chocolate treat:

So Sweet Couture, Hooey & Boo Chocolate Bars: These were an unexpected find during our birthday stay at the Bluestone resort last September. Mike and I found them when we visited the Bluestone village shop and on discovering that they were both DF and SF, I immediately snapped up 2 bars to tuck away for the Christmas stockings. We opted for a mint bar for G and a raspberry bar for M, which were both a huge hit and I don’t think I was even offered a taste of either one. Needless to say, G and M give these bars a huge thumbs up and I’m waiting for the perfect opportunity to buy both the Orange and White Orange bars that are also available on their website.

Ooh! Chocolata: Another pre-Christmas purchase, though this one was much closer to the big day itself and fortunately available much closer to home. Mike and I were at our local greengrocers looking for the perfect Christmas wreath for our front door when these items were spotted. Another vegan and soya-free chocolate range and this time I opted for the honeycomb and minty crisp bars, knowing that both children would be happy with either flavour. Just as with the Hooey & Boo Chocolate bars, these didn’t make it much further than our flight out to NYC on Boxing Day, but that simply means that I know they were a big success and nobody’s going to complain if a few more bars find their way into our house as we head towards Easter as well as make our way through weeks of GCSE exam revision and instrument practice.

CoCo Chemistry: I don’t quite know why nearly all of our best discoveries happen when Mike and I out and about exploring together, but this was yet another one that we stumbled across on our recent day out for my birthday. We were visiting the beautiful National Trust property, Lacock Abbey, and decided to spend some time wandering through the village itself, mostly because I wanted to pay a visit to the wonderful Watling Goldsmiths to give Mike some not-so-subtle hints for future present ideas. It was a rather grey and miserable day in February, but everything brightened up considerably when we entered the doors of this wonderful chocolate emporium. I wasn’t expecting to find anything for G or M, so was delighted to spot this vegan chocolate slab on their shelves. In fact, they have a good selection of vegan chocolates, although I only conceded to buy one for my pair to try. It’s currently safely hidden away, ready to be pulled out for a more suitable occasion. I don’t know what the vegan chocolate tastes like, but if it’s anything like as good as its more normal counterparts, it’ll be delicious!

 

14 years of wonderful chaos!

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14 years ago today he arrived in our world in a whirlwind of absolute chaos; and, to be honest, we’ve spent most of the time since then embracing that chaos with him. I can’t remember a great deal about his arrival, both M and I were far too ill for me to even consider stockpiling memories to look back on in the years to come. Indeed, the first image I have of our premature son was from the polaroid photo that Mike eventually brought back from the NICU, a photo that I wish we still had, but have absolutely no idea what happened to it and I would guess it got lost in the chaotic few days that followed his birth.

14 years on and life with M is filled with what can only be described as wonderful chaos. He is growing into a kind-hearted, empathetic young man, who constantly surprises me with his deep thoughts and insightfulness at times, whilst filling many other moments with humour and frustration in equal parts.

Happy 14th birthday M – as your card said this morning, you are one of my favourite kids! Love you always xxx

The Power of Sunflowers

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Nothing brightens up a gloomy day like a beautiful sunflower. Tall, majestic and reaching for the sun, its bright yellow colour is sure to cheer up even the darkest of moments. There really is just something intrinsically cheery about this flower to my mind; but did you know just how powerful sunflowers can be?

I am, of course, not talking about the flower itself, but rather the incredible Hidden Disabilities Sunflower scheme, launched in 2016 in response to a query from Gatwick Airport as to how to better its help to travellers passing through its doors and since adopted by numerous airports, supermarkets and other stores and businesses across the UK as well as slowly being recognised worldwide. The scheme uses bright green lanyards covered with sunflowers to indicate that the wearer has a hidden disability and therefore might need additional support, time or space to use that particular facility. All done in a subtle yet visible way.

We hadn’t engaged with the sunflower scheme previously, but given G’s recent challenges with panic attacks and anxiety as well as M’s ongoing health issues and his own anxieties when it comes to travelling with his medicines and foods, the time finally seemed right to give the sunflower lanyards a go during our Christmas trip to New York. I requested them through the Heathrow airport website and was delighted with how promptly they arrived with us with no hassle. They formed a part of the big reveal on Christmas day and both children were wonderfully willing to wear them as we travelled with G having to be reminded to remove hers once we reached our hotel in NYC.

The support given throughout the airport was fantastic and extremely thoughtfully and carefully given. The Virgin Atlantic staff at check-in approached Mike and I to see what additional help we might need, but didn’t ask questions in front of either G or M. Our journey through security was remarkably easy as the airport security staff opened a new lane for us to go through without comment and were then careful to minimise the examination of M’s medicines and the food that we were having to carry with us. I was impressed with just how well all the staff working at Heathrow appeared to have been trained and how they offered us help and support without making a fuss.

The only problem encountered was that M found the material of the lanyard uncomfortable to wear, complaining it irritated his neck, so instead I attached it to his backpack, which made it less easy to spot on a first glance. I’m sure that he will not be the only person who will struggle with this because of sensory issues and so was glad to be able to give some constructive feedback to what is otherwise a fantastic scheme. Our sunflowers were unquestionably powerful during our Boxing Day adventures and will no doubt be something we make use of again the next time we travel.

Our Virgin Atlantic Experience

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There’s been a lot of criticism across social media over the last few months about the attitude of Virgin Atlantic towards passengers with food allergies on their flights, in particular relating to those travelling with nut allergies. Now, I can’t comment on how they perform in those situations as we are fortunate to have no known nut allergies, though truthfully M hasn’t had a peanut in years, so we wouldn’t know if he is allergic or not. However, I was interested to see how they would do when it came to the allergy requirements of G and M, especially given our amazing experience when we flew with them to Florida in 2014.

Our first challenge was having some safe milk for M to drink for breakfast in the Heathrow airport lounge. Unlike the fantastic V-room at Gatwick, who stocked B-free bread for toast and brought in 2 cartons of rice milk just for M and G, the Heathrow lounge was less able to help and seemingly less willing to try, simply saying that their staff wouldn’t be able to bring the rice milk through security, so it was up to us to provide it if we could. I was extremely frustrated by this response when I received it, but rather than sit and moan about their inability to be as helpful as I would have liked, instead decided to contact M’s consultant at our local hospital to ask if he would write an updated medical letter stating that we needed to carry a number of safe food items through security for M. Less than 2 weeks after my request, 2 copies of that letter landed through our door and we were easily able to walk through security with the carton of rice milk in our hand luggage without issue once the letter had been seen. I always recommend carrying medical letters and copies of prescriptions when you travel and this experience proved once again, just how valuable that can be.

Despite that rocky start, I hoped things could only improve and as we had booked our complete holiday through Virgin, I had already asked that notes be added to our booking to state that both children had food allergies. I also updated our booking confirmation online with a request that G and M had the gluten-free meals and followed that up with an email noting that both also needed to be dairy-free if possible. I mentioned that M ideally needed to avoid egg and soya if it was at all possible, but knew this was a lot to ask and simply leaned on the truism that you never know what’s possible until you ask.

The meals that arrived with us for both flights were both gluten- and dairy-free, but included a couple of items for M that contained a small amount of egg. This time there was no mix up with meals going to the wrong seats and whilst the meals offered were not exactly what G would have chosen, M tucked in wherever he could. As always both of their backpacks, and mine, were well-stocked with some safe snacks to supplement what was provided and so we were able to muddle through quite successfully.

 

Our Virgin Atlantic experience is one that I would definitely count as a success and neither child, M in particular, suffered any fallout from what they ate on the flights. Not only were the cabin crew diligent with what snacks and drinks they offered to them, but they were also fantastic in helping us celebrate G’s 16th birthday for just a little bit longer and in great style, with a visit to the cockpit for both children on our flight to New York and a birthday present of some “lounge wear” (pyjamas to you and me) and some chocolate on the way home.