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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.

School Dinners

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One of the roles that I’m most proud to have taken on in the past few years is that of Allergy Ambassador for the wonderful restaurant review website, Can I Eat There?, not least because we are a family who enjoys to eat out and embraces the challenge of finding somewhere safe for both M and G. We have to accept that there a some places that we just can’t visit as a family because of their allergies and whilst that causes the occasional moments of heartbreak, we’ve learned to avoid them as best we can. In similar fashion, we have had to adjust our thinking when it comes to the matter of school lunches for both children. G’s food allergies have been a part of our lives for long enough that we’ve always had to make special provision for her lunches at school and, whilst her first school was prepared to buy gluten- and dairy-free alternatives to cook for her on a daily basis, it became increasingly difficult once we made the decision to move away article-1052305-0283dca100000578-744_468x306from the independent sector to a school with external caterers. We did manage for a couple of years once M had started at school by making sure that G and her teachers knew to pick the safe option from the choices given, but once M went MEWS-free in 2011, school dinners became a thing of the past and packed lunches were the way forward.

I was recently talking to a good friend when the subject of school lunches came up in the conversation. If I’m honest, I can’t quite remember what led us to that topic, but I was really interested to hear about the steps her daughter’s school was taking to make more than adequate provision for those with dietary needs. The school in question, Ashcombe Primary in Weston-Super-Mare, runs their own kitchen and work hard not just to maintain their healthy school status, but also to use local produce and to minimise waste. They are also keen to be inclusive in their approach to cooked school lunches and ask parents to talk to their kitchen manager if there are specific dietary requirements or allergies, menuso that they can work together to provide a healthy and nutritious alternative menu customised for that child. I’m sure that they cannot be the only school to make such efforts, but they are certainly the first I’ve heard about from someone in the know and I was impressed by what she told me they offer.

However, when I saw this sample menu that she e-mailed across to me, I was even more impressed. This school kitchen has really taken on board the requirements of the 2014 changes to EU legislation concerning allergens and their monthly written menu reflects them. Every single item on the menu indicates which of the top 14 allergens are included in the dishes and as each day offers 4 alternatives, that is no mean feat and shows a level of dedication to getting this right that is admirable. The steps this school has already taken in making this effort would reassure me, as an allergy Mum, that the kitchen manager knows her stuff when it comes to catering for children with allergies and that is something that is, without a doubt, absolutely priceless. Of course, I don’t know how successful they are in preparing freefrom alternatives when needed and would be fascinated to discover if their encouraging start actually delivers in reality.

Do you know of a school that offers a similar service or have firsthand experience of one? I’d love to hear from you and be able to share and celebrate these individuals who are working hard to be inclusive and not exclusive when it comes to lunch-times at school.

Giraffe, food allergies & me

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This restaurant chain has long been a favourite of ours, even before the days of M’s extreme restrictions, and was one of the very first that we ventured back to once we had successfully got 3 foods back into his diet in 2015. We’ve visited their restaurants in various locations across the UK – London, Bristol, Milton Keynes – and have unfailingly had great service and understanding about the risks surrounding food allergies. So I was disappointed recently to see a Twitter conversation where fellow allergy-sufferers had not had such a good experience and indeed where one had suffered a severe anaphylactic reaction when her request for no soy beans in her food had been ignored. tweet

Naturally, me being me, I couldn’t help but wade in with my size 8s, not just because of our previous encounters, but because of our most recent and excellent experience at the Giraffe restaurant in the Brunswick Centre. I was so impressed with the impeccable diligence taken in regards to safeguarding my children during our meal that I have been singing their praises far and wide and felt it was about time that I did the same here as well.

img_11141G, M and I had headed there for an early supper following a busy day in London. G had been at her 2nd YPF meeting at GOSH for the day, whilst M and I had walked many thousands of steps exploring the activities and displays on show to mark the 350th anniversary of the Great Fire of London. Once our day was done, we had just enough time to sit down for our dinner before heading off to catch our train home and wandered to the Brunswick Centre because of its proximity to GOSH. The Brunswick Centre hosts a number of different restaurants, most of which we have tried at one time or another over the years, but Giraffe is the one that we most commonly head back to as both children enjoy the food and it is one of the few that prepares rice for M to accompany his meal.

downloadDecisions made about what they’d like to eat, our waitress came to the table to take our order and this was when their attention to details become really apparent. I started by telling her that both children had allergies and she immediately disappeared to grab their allergen listing to run through their menu choices with me. I mentioned that M’s allergies in particular were complex and unlikely to fit the detail given in their book, but she advised me that she had to go through it because she would be asked about it as soon as the order went to the kitchen and that her neck would be on the line if she hadn’t taken that first step of checking it all out. We started with discussing what would be safe for M to eat and she was immediately able to offer brown rice, a grilled chicken breast and cucumber slices, a meal that would more than meet his needs and then we moved on to G.

G had decided she really wanted steak and chips for dinner and whilst there was no problem with preparing a safe steak, the chips were more of a problem. Our cheerful waitress said it was possible that the chips couldn’t be cooked gluten-free as it was dependent on whether the oil in the fryer had been changed since their lunch-time service or not. She immediately headed off to the kitchen to check the situation with the chef and came back to apologise that unfortunately the chips would be cross-contaminated and so we needed to pick something else. G was insistent that she didn’t want rice and I was struggling to spot an alternative as the potato wedges are also cooked in the fryer and so wouldn’t be safe. 20150408_181702However, our waitress came to the rescue and suggested that G had the crushed potatoes as, whilst the menu stated they included dairy, she could request that they be prepared with just a little oil instead. Situation saved!

It didn’t take too long for our plates of food to arrive at the table and we were delighted with the meals that were served. Despite all the hassle with getting G’s meal ordered, the steak and crushed potatoes that arrived looked delicious and she devoured the lot in fairly short order. M munched his way through his dish too and the second chicken breast that we asked for half-way through was prepared and served before he had managed to clear his plate. I really was incredibly impressed with their approach to preparing, cooking and serving allergy-friendly food and how hard they worked to ensure that we all had a meal we could enjoy and remain safe eating. I don’t know if this system is in place across the Giraffe chain, or if it is carried out as thoroughly as it was at the Brunswick Centre, but I’m certain that this is a restaurant we would happily choose to eat at again.

The impact of mental health

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In a world that is frighteningly open as people regularly share their location, activities and even the contents of their lunch box via social media, there is still a huge reluctance to linger on anything that hints at emotional instability or mental distress; but the sad truth is that matters of mental health are a huge part of living with a chronic illness and not just for the individual concerned. Today is World Mental Health Day, a day that is seeking to raise awareness of mental health conditions in an open and honest way, to encourage individuals to understand more about how these problems can affect just about anyone at one time or another in their lives and how others can support them. There is a tendency to make light of the language used when referring to mental health issues, after all, how many times have we heard someone say that they’re feeling depressed about having to go back to work after a holiday or the break-up of a particular pop group1-in-6-wmhd, when what they really mean is that such events have saddened or upset them rather than the total immobilisation that comes when you struggle with depression on a daily basis. I am not devaluing the emotions they may be experiencing when those things happen, but are they really akin to the overwhelming nature of depression? I think not.

I don’t speak lightly as I have been dealing with the constant presence of recurring depression since my teenage years. I know what that “black dog” is like and just how much it can impact on your ability to function on a day-to-day basis in the real world. As a teenager living with T1D, I struggled with accepting that this was a reality that was never going to change for me, that the need for regular injections, sensible eating and facing the risk of serious complications was never going to disappear. I didn’t handle it well. Though few of my peers may have realised it at the time, I refused to do what I needed to do to maintain my health, not because I wanted to cause myself problems, but because I couldn’t see a way to live like my friends and not feel isolated by my T1D diagnosis. I know that I was not alone in my reaction to my chronic illness and my family and I owe a great deal to my fantastic consultant who worked hard to help minimise what often felt like insurmountable differences as I went through those troubled years. With time and support, untitledI did eventually come to terms with my diagnosis, though sadly my determination to get my T1D control back on an even keel brought with it an unexpected complication with my eyes, which in turn has led to even more serious implications than I could ever have imagined when I was 13 and feeling very much on my own in a battle against the rest of the outside world.

Move forward a few years and I found myself back in the mental health fight when I was diagnosed with post-natal depression following the difficult pregnancy and early arrival of M. This time I was more open to receiving help and my diagnosis, when it came, proved a huge relief as I didn’t have to actively speak out and ask for that support. Having struggled with counselling as a sole answer to my depression as a teenager, I readily accepted the suggestion from my GP that I be prescribed with low-level anti-depressants for the first few months and am not ashamed to say that those helped me through some very dark times indeed. Anti-depressants are not for everyone, just as much as counselling hasn’t always proved to be a success for me. There should be no stigma attached to needing that medicine to survive the battering of a mental health problem. It is a necessity for some, just as insulin keeps me alive or a feeding tube and elemental feed proved to be what M needed to help him regain better health.

I have learned over the years to identify when I start to feel a little low and my ability to cope with the everyday becomes more of a strain. Mike and my Mum have developed their own sixth sense to pick up when I am beginning to struggle and offer me their unfailing support as I try to find my way back out of the pit. Our 7 year journey to get an initial diagnosis for M and the ongoing challenges in keeping him fit and well have taken their toll and there have been times when tempers are frayed and relationships fractured because of it. 1-in-3-traumatic-event-wmhdThat strong support network of family and friends who are constantly surrounding me is invaluable and the knowledge of what is really important – M and G – keeps me getting out from under the duvet every morning and making my way through each day.

Even more importantly, my own experiences with chronic illness mean that I am well-tuned to the impact that his own diagnosis will have on M. It is a frightening reality to face that your own child might end up fighting the same demons that you did at that age, but it also gives me an insight that lends a level of trust and understanding between M and me that is unlike the relationship he has with anyone else. I can fully empathise when life seems unfair and unjust and he can allow his emotions to pour out because he believes that I get it. We have long been arguing for psychological support for M and finally, thanks to a developing shared care relationship with our local hospital, that seems to be being put in place. Our new gastro consultant has fully acknowledged that the EGID diagnosis will have not only shaped the person M has become, but also had an effect on G and on our family dynamics. He wants to adopt a holistic approach to treating M and the next few weeks will tell if that is a solution that will make a significant difference going forward. I know that recognising the signs of mental stress now are really important when it comes to M’s ongoing mental health, especially as there can be no denying that he already struggles with mood swings, anxiety and feelings of isolation, not just due to his EGID, but also because of his dyslexia and dyspraxia. Early recognition of those symptoms will help us and the medical professionals find a way to put into place coping mechanisms that will serve him, not just now, but into his adulthood too. He already has a good cohort of friends surrounding and looking for him, but they are young, only 10 years old. Just as with any other child as they grow up, he will learn to distinguish those who will stand by him through thick and thin and those who are just there for the fun times. Most importantly to me, 70300is that he doesn’t feel ashamed or embarrassed by the times when he’s not able to cope emotionally, or mentally, or even physically with the pressures that his diagnoses will have on his life, and that he learns to openly acknowledge them; and that he realises that he’s not on his own in that regard.

Likewise, we can’t ignore the reality that having a chronically ill sibling has a massive impact on G and her mental health too. The Young Carers meetings that she has attended over the last few months have covered the areas of anxiety, facing fears and anger management, which are all inextricably tied up with the role of being a young person caring for another. Those sessions have taught her strategies for dealing with her yo-yoing emotions and provide an outlet for them in a safe and understanding environment. She has made stress balls and relaxation jars to bring home and use as she needs. I hope that the proposed psychology appointments at our local will not only look to support M, but also to help G in her own right as well as us as a family. These are all things you don’t want to even consider that your children might ever need to deal with, but there is no escaping the reality of chronic illness and mental health, and we need to accept our responsibility to help them both. That is the key message of today’s World Mental Health Day – that we all have a role to play in supporting those around us as best we possibly can.black-dog-step-on-you

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.

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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.

thanks

 

Giving young people a voice

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ypfI mentioned a couple of months ago that G has been invited to become part of the GOSH Young People’s Forum, or YPF as it’s more readily known. When I wrote that post, she was just about to attend her first meeting and was excited to see what the YPF was all about. For those of you who perhaps can’t quite remember the finer details, it’s a group of approximately 40 young people aged between 11-25, who are all either current patients at GOSH, previous GOSH patients or siblings of patients. As well as being one of the youngest in the group, G is, I believe, unique in that she is the only member who is the sibling of an existing GOSH patient, which makes her comments valuable coming, as they do, from a completely different viewpoint.

The purpose of the YPF is to improve the services provided by GOSH to their young patients, whether inpatients or outpatients and focusing on the teenage patients in particular. It is very much a two-way process, with the hospital asking for input on important issues or developments that are happening on-site as well as the YPF members developing their own projects to improve the experiences of patients and their families. man-speaker-1Members get involved in all aspects of hospital life from inspections such as the PLACE assessment and providing valuable feedback on projects planned by hospital staff, to writing content for the TeenGOSH community webpages and helping design areas of the hospital such as the reception area, which was redeveloped in 2014. You can read more about what the YPF members have been up to through their blog here.

The Forum meets 6 times a year at the hospital and each meeting lasts for the full day, with lunch and snacks provided by the GOSH catering team. They have been brilliant at providing safe food for G, although there are still a few glitches to iron out such as making sure her lunch arrives at the same time as everyone else’s. The 2 meetings that G has attended so far have been extremely different, but overall her experience has been good and she’s keen to continue her involvement with the YPF for the time being. At her most recent meeting – the minutes of which you can find here – they really did cover a whole range of different aspects of hospital life. G has now become something of an expert on the subject of the recruitment process and was able to share what they had been told about the different areas that needed to be covered when GOSH is looking to recruit new members of staff. A professional photographer went along to take photos for the new publicity campaign to raise awareness of the YPF and its role within the hospital and G is looking forward to seeing which photos are chosen for the final published materials. They were also lucky enough to go on a couple of tours of some little known areas of GOSH, including the various sacred places that provide spiritual support for those families from a number of your-halloween-party-2014-in-paris-sizel-161421-649-420different religions and a sneak peek at the Morgan Stanley Garden that was displayed at the Royal Chelsea Flower Show earlier this year. The particular highlight for G was the discussions held around arrangements for the teenage attendees of this year’s Halloween and Christmas parties and she had great fun inventing gory names for the food on offer at Halloween.

Cheese and Onion Skin flakes anyone?

Something sweet for the weekend

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If there was one thing we were all in need of last weekend, it was a sweet treat and I really wanted to bake something that I hadn’t made before. M was keen for me to make an entry for Delicious Alchemy’s own version of the Great British Bake-off, the Gluten-Free Magic Bake-off, so I needed something that would feed both children as well as hitting the brief he gave me of “something spectacular Mummy“. Hiding in the kitchen cupboard was a packet of Delicious Alchemy’s Gluten and Dairy-free Vanilla sponge cake mix, an item I’d bought on something of a whim to go with the 5 bags of their Rice flake porridge that would keep da_bake_off_logo_2016M going for the next few weeks. I pondered on whether I could use the mix to bake similar cupcakes to those I would be making for M and settled on the classic flavour combination of pear and ginger that has served me so well in the past. I haven’t made pear and ginger cupcakes before, but combining my recipe for pear and apple cupcakes with that for pear and ginger cookies, I was certain that I was onto a winner.

I started with a batch of M’s cupcakes and carefully tasted the batter mix to make sure that the ginger wasn’t too overpowering, something I’ve been guilty of in the past. Satisfied that the flavour combination was exactly what I wanted, it was time to move on to G’s cupcakes and I couldn’t wait to try out the sponge mix. Such mixes are a convenience I don’t use very often, usually because they don’t meet our complicated allergy needs, but given our last 2 Decembers with M disappearing into hospital and missing G’s birthdays, I figured that anything that could make the whole cake-baking experience a little easier for whoever ends up making her a cake can only be a good thing. I was really impressed with the sponge mix and how easy it was to use. I followed the packet instructions precisely, including using an egg  –salted-caramel-1 I can’t remember the last time I used an egg in my baking – and then added my own twist of pear and ginger. A quick taste reassured me that the flavour was good and then, with M’s cakes already out and cooling on the rack, popped G’s batch in to bake. The results looked and smelled delicious and soon joined M’s to cool, whilst I moved on to think about the icing.

Now this was where I wanted to venture into something completely new. I perfected coconut oil icing for M about this time last year, so it was time to take that knowledge and use it to create a different flavour. I turned to my ever faithful companion on these allergy-friendly recipe hunts, Google and discovered this great recipe combining ginger cupcakes with a salted caramel icing. I’ll be honest, salted caramel is not really my thing, but a couple of months ago, M had asked if I could make M-friendly caramel for him and I decided that there was no time like the present to take on that challenge. Rolling my sleeves up, I followed the recipe carefully, tweaking and swapping out ingredients as necessary to meet our allergy needs. I started with making the caramel and was delighted with the result. It does have a slightly unusual flavour because of the rice cream used to make it, but it wasn’t bad for a first attempt and I was certain that M and G would both love it. Once the caramel had cooled, I mixed it in with the coconut oil icing and then piped it onto the top of my cupcakes. A sprinkle of crystallised ginger added the final touches and I ended up with some beautiful cupcakes to serve. G and M both loved the look of them, but to my surprise the icing proved to be just a little too sweet for my sugar-fiend, M. Nevertheless, they’ve been a hit in our household this week and it’s great to have found a way to make tasty dairy-free caramel.

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Don’t be afraid to ASK

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ask-boltonNot too many months ago, we happened to find ourselves near the beautiful town of Great Malvern and in need of a late Sunday lunch. Much to my surprise, given how small I’d assumed this town was, I discovered through a hurried internet search that Great Malvern itself hosts an ASK restaurant and quick glance at their online menu suggested that we’d be able to feed our dynamic duo there without too much hassle. It doesn’t fail to amaze me that we consistently find ourselves enjoying the food at Italian restaurants given their regular gluten-laden fare of pasta and pizza, but I suppose it should really come as no surprise given how many allergy-friendly foods we found on our recent trip to Italy. They almost always serve a chicken dish in one form or another, so whilst it is near impossible to get M a portion of plain rice to accompany his meal, risotto being their main rice offering, we are happy to eat there and I often recommend them on to others in the allergy community.

img_06291As always the children ordered their perennial favourites when we eat anywhere that has Italian food on offer. G opted for a gluten- and dairy-free pepperoni pizza with extra goats cheese, whilst M had his usual dish of grilled chicken breast and cucumber. Our waiter made sure he fully understood our allergy requirements as well as making a note for the kitchen and checked their allergen menu to make sure that everything we had ordered could be safely prepared for G and M. img_06261We’ve taken to ordering adult-sized portions of meals for both children these days and the generous amounts that arrived were more than enough to satisfy my ravenous pair, with both clearing their plates in impressive fashion.

As ever the allergy-offerings for dessert were poor and G was disappointed that they didn’t serve a gluten-free garlic bread or dough balls for a starter, something she’s become addicted to whenever we visit Pizza Express. We enjoyed our first meal at ASK and it’s always great to have another safe restaurant in our back pocket for future meals out. The Great Malvern restaurant is set in a beautiful location and we had a table looking out over the fantastic view from the upstairs windows.

G’s marks: 7/10              M’s marks: 7.5/10

A Survival Guide For School & Allergies

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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. img_11331I 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, circle-timebut 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.

fabed1The information sheets that I had provided were given to the teachers and, combined with the notes they had taken whilst talking with me, used to draw up a healthcare plan for M that covered all possible situations. His on-going bowel control problems were sensitively handled and a contingency plan put in place to ensure that he always has access to a toilet wherever he is in the school. The HCP was written by the school SENCo and then sent home for my review before being published, shared with the whole teaching team and displayed prominently in the staff-room. Even better, every year since then I have been asked to review and amend his HCP to reflect any medical changes that have happened and the school continue to be sympathetic to his needs.

SAM_1175As 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 ea544311f5697d6334b2df7079ccedf9happy to leave M in their more than capable hands on a daily basis. It is a testament to their dedication to their work that, in the last 3 years, the only things that have caused an extended absence from school have been the annual hospital admissions at GOSH. They have always endeavoured to make sure that M is safe whilst at school and the fact that he was able to attend as normal with both his NG feeding tube and his broken leg is incredible. A truly remarkable relationship has grown over the years between our family and so many of the teachers and is something I really value.

They have also nurtured and encouraged M to talk about his allergies and EGID and have shown continued support as he has become an advocate for educating others about his illness. M has held cake sales, run playground games and created short films explaining the impact his diagnosis has on his life. He has developed a confidence in talking to others and 18 months ago was able to answer the questions asked by members of home-school-connectionevery 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.

When September arrives

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img_11331September 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]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.

img_11381September 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. img_11431Mike 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.