Tag Archives: friends

In the blink of an eye

Despite the numerous hospital visits over the last few weeks – think local hospital…GOSH…local eye hospital…Moorfields…local hospital….local eye hospital….local hospital – this December has been everything I’ve longed for it to be and so much more. For the first December night in a long time, it’s fast approaching midnight Friday and my evening of work is only just beginning. In the last couple of hours, I’ve knocked up a batch of img_12811M-friendly apple and pear cupcakes, a batch of G-friendly vanilla cupcakes and I’m currently struggling with the chocolate brownie sponges that are refusing to be moved from the cake tins. There’s 2 lots of icing to sort out, decorations to be finalised and they all need to be applied to the cakes themselves, but I’m delighted to find myself spending this winter evening like this.

Not only have we broken the December 3rd curse of an admission to hospital, but we’ve also beaten the steady stream of bad luck that has engulfed G’s birthdays for the last couple of years and are getting to spend the day itself at home with our most favourite young lady. Well, I say at home, but of course, the path of G’s birthday never did run quite that smooth, but it’s as close to being at home for the evening as we could wish. It’ll be a day of “work as usual” for us all and our evening plans are dominated by M’s school’s carol service, but we’re all together and that’s something that hasn’t been possible since 2013. All that being said, it does appear that we have created a new December tradition when it comes to G’s birthday and it’s a good thing img_12861that my sense of humour is very much in tact. It was with a wry smile that G and I summoned a black cab to take us to GOSH on Sunday from the train station, not for a visit to a hospital-bound younger brother, but  this time for the final YPF meeting of the year. I’m not sure that Christmas would be Christmas for me without the opportunity to wander the length of Oxford Street on the hunt for last-minute gifts and small stocking stuffers!

img_12881It feels even more special this year as my baby girl, my precious first-born, hits the start of her teen years and all the emotions that those have to bring. In the proverbial blink of an eye, my December 2003 baby is turning 13 and in front of me stands a beautiful young lady, with a little more attitude and grumpiness than I would have chosen, but with a kind heart, generous spirit and the most loyal friendship on offer that you could ask for. She is growing up fast and we are quickly losing sight of the easy-going, chatty toddler that she was as an opinionated, independence-seeking, moody teenager appears in her place. She can slam doors with the best of them and her stomping feet can make it feel as if the kitchen ceiling is about to come down at any moment – and indeed it pretty much has done. These days she brooks no nonsense from her little brother and yet she will defend him to the hilt when it comes to it and is there to comfort and hug even when he doesn’t want it. She’s looking to make sense of a world that often doesn’t and is trying to understand how to interpret the nuances when it would be so much easier if everything was clearer defined in black and white. She can be the much-needed splash of colour in a reality that is all too often dark and depressing and yet will quietly fade into the background when everything gets too intense and too much. She is an incredible blessing to all our lives and we are all so grateful to be celebrating a life that is so much better for the 13 years she’s been an integral part of it.

Happy 13th darling G, we love you so very, very much xxx

Indescribable fear

b6e83c2b62a1e0ec0cd3fbc189efbc94When I wrote this blog last week, it was one of the hardest things I’ve ever sat down to write. Life has a way of throwing a curveball when you least expect it and these last 2 weeks have been no exception. My words captured my emotions at their most raw, at their most honest, when the fear of what could be had me tightly in its grip.

In November I wrote a blog all about World Diabetes Day 2016 that contained these words:

The 18 years since that fateful day have been filled with… the ever-present nagging fear that despite the continuing ability of my right eye to confound the experts by being startlingly healthy in comparison, things could change without warning at any moment…”

not realising that that moment would come so much quicker than any of us expected. Before Diabetes awareness month had finished, I went for my annual retinal screening at the local eye hospital and was given the devastating news that my right eye is showing the early signs of diabetic retinopathy. I was told that there is no choice. That I have to have laser surgery as soon as possible. Before Christmas. The last few days have been full of unending tears and constant fears about what this could mean for my sight and not just my future, but the future of our family’s life together.

The good news is that the retinopathy has been caught early, far earlier than that in my left eye 18 years ago and the consultant is confident that the amount of laser burns I will need should leave me with enough vision to still be able to safely drive my car. He listened to my concerns that the same complications could occur again and told me that technology and the equipment used has come on a long way and that the treatment is a lot more gentle than it was then.

The truth is that I’ve a lot to be grateful for this time round, but that doesn’t stop the fears that have haunted every night’s sleep since that appointment.

The fear that I might never be able to read or write without aids.

The fear that adventures to new places will be restricted to the things I can hear and smell and that I will no longer be able to fully appreciate the beauty of the world surrounding me.

The fear that I will lose so much of the independence that we all take for granted and will become dependent on those who surround me.

The fear that there will ultimately be an unfair role reversal and my children will feel a responsibility to look after me that they should never have to feel, ever.

The fear that I might not be able to clearly see my beautiful children’s faces ever again.

Nearly 2 weeks on and the fears have been joined by their eager and willing bedfellows, confusion and doubt.

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Unable to trust fully the opinion of our local eye hospital who did, after all, make such a dreadful mistake 18 years ago and left me dependent on the ongoing health of my right eye, Mike and I took the decision to go to Moorfields Eye Hospital, London for a second opinion. I needed to be sure; to be certain that this time the advice I’d been given was right and to have the confidence in the doctor who would treat my eye. That’s what we expected to get, but instead I’ve been left confounded by the outcome of that appointment, almost as much as I was stunned by the appointment at our local the previous week. Last Wednesday, this consultant said that he could see no signs of diabetic retinopathy in my right eye. None. At. All. He could not identify anything that would cause him to support the suggestion of my local hospital that I had urgent laser surgery and would, in fact, suggest that, given my past experience and subsequent loss of sight in my left eye, no treatment be given at the moment. He could not justify even considering it as an option.

Which left me feeling absolutely bewildered. Two top eye hospitals; two specialist doctors; and two very different opinions. I wanted to be pleased by the new diagnosis, but those fears had taken a hold and weren’t willing to let me go without a fight.

So yesterday I was back at our local eye hospital, seeing my named consultant, who is considered to be one of the top ophthalmologists in the field of diabetic retinopathy. This is a specialist who knows me, saw me safely through 2 pregnancies and carried out my cataract operation 8 years ago. I can’t lie. My confidence in our local hospital is at an all-time low and I dread to think what the outcome might have been if we hadn’t decided to seek a second opinion before the surgery took place. The outcome was the very best that I could hope for. She completely concurred with her Moorfields colleague and said that laser surgery is the very last thing I need right now. She acknowledged that our trust in our local hospital will be at rock-bottom and knows she has to do a lot to rebuild our faith in them. From this point on, she has insisted that I will only see her for my future appointments and has given me free access to her via her secretary whenever I need it.

The last 2 weeks have been a terrifying rollercoaster ride that we were unable to escape until we reached the end. We have been supported by our fantastic families and an amazing group of friends who have offered love, prayers and help every step of the way. That help has enabled us to protect the children from the turmoil and kept our fears from impacting on them.

I am hoping beyond hope that those fears will never be realised, but only time will tell.

Christmas Countdown

The beginning of December has finally arrived. With it comes freezing temperatures, roaring log fires, Christmas trees, pantomimes, carol-singing and, in our household, some frantic last-minute plans for impending teenagehood and a quick anniversary celebration if we can only find the time to squeeze it in. And yes, we perhaps didn’t plan things too well – can you guess that I’ve heard those comments just the odd once or twice before?

These days most children seem to expect a chocolate advent calendar as a necessary part of the Christmas countdown, but what do you do when your child has allergies and can’t enjoy something that’s the same as all their friends? M has asked if we can bake enough of his safe gingerbread cookies for him and G to enjoy 1 everyday between now and the big day itself. It is, without doubt, one of those things that always features highly on any allergy parents’ to-do list at this time of year as it takes some time to find the perfect, safe alternative, but there are some really great options out there and I thought I’d share some of my favourites with you:

And not forgetting one for those much-deserving Mummies out there (it contains gin in case you couldn’t work it out)!

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Cafe Nouveau, Frome

cafeThere’s nothing better than finding a hidden treasure and this small cafe is an absolute gem. We were visiting friends who moved to Frome at the start of the summer and on recommendation from another friend, decided to try out Cafe Nouveau in Tytherington for our Saturday lunch. Long gone are the days of just dropping into a cafe or restaurant and hoping for a safe meal to feed both children, so about a week before our visit I wrote a quick email to the owner, Susan Green initially asking if it would be possible for us to bring a packed lunch for M to enjoy whilst the rest of us ordered from their menu. Much to my delight, Susan replied offering to prepare a cooked lunch for him based on his 5 safe foods and then impressed me further with some extra questions about which herbs and seasonings could be added to his meal to give a bit more flavour. This was already a meal that was sounding like a success and I couldn’t wait for our visit to see exactly how well it delivered.

img_12441I’ll be honest and say that we didn’t realise at first that the entire menu is gluten- and dairy-free, but as soon as we had established that fact, G was in her absolute element. I cannot adequately put into words her reaction when she realised that she could choose anything she fancied and soon settled on a prawn mayonnaise ciabatta with a small side salad and accompanied by her perennial favourite, a soya milk hot chocolate. When we placed our order for her drink, Susan reassured us that because G needed to be dairy-free, she would use dark chocolate powder to ensure the drink was completely safe for her. They had a fantastic range of alternative milks and milk-based drinks on the menu, including almond, coconut and soya milk as well as some cows’ milk for those customers who don’t want to try something different. We were told that the cows’ milk is kept separately and different containers used depending on the milk used. img_12451M was keen for G to try the “Vanilla Soya Frothy”, which I assume is a vanilla milkshake, but G was determined to indulge and stuck resolutely to what she knows she likes.

Mike and I both decided to take a look at their specials board, which is updated I believe on a daily basis and contained some delicious sounding dishes. I checked to make sure that their soup of the day didn’t contain potatoes and chose the chicken soup with a gluten-free roll on the side. Mike opted for their daily special of a spinach-filled chimichanga, which img_12461Susan mentioned was a fairly small portion and so added the Mezze plate, which included houmous, olives and some delicious seeded crackers. The plates, when they arrived, looked wonderful and the food was absolutely delicious. My soup had that real home-made feel to it, was packed with chicken and tantalisingly fragrant in its flavours. I was impressed with the gluten-free bread, which we were later told is baked off-site in a img_12431bakery that has an exclusively gluten-free area to make sure there is no cross-contamination risk. G’s sandwich soon disappeared and her hot chocolate didn’t last long either! As for M, he was thrilled to receive a healthy-sized portion of plain rice, topped with 2 roasted chicken thighs and some apple and ginger purée. He was a little disappointed that they didn’t stock any rice milk for him to drink, but was happy with the cartons of cloudy apple juice that were on offer instead. We were all delighted by our fantastic meals, little realising that the best was yet to come.

Anticipating that there wouldn’t be much on offer for M as a dessert, I had brought some safe snacks with us for him whilst the rest of us enjoyed a pudding. For the first time ever in her life, G had the chance to experience something that is commonplace for all her friends. She and I went to the counter, where an impressive array of cakes, cookies and other sweet treats were on display and she could eat every single one of them. That is a treat that is absolutely priceless and I loved seeing her struggle to pick just one item to enjoy after her lunch. There was chocolate cake, Victoria sponge, reduced sugar apple cake, flapjacks and some amazing-looking bite-size vanilla and nut ball treats. G finally settled on a toffee popcorn cookie, whilst I savoured a slice of the Victoria sponge.  Neither stayed around long enough for me to snap a photo, so I’m afraid you’ll just have to imagine how wonderful they looked. We were so impressed with the selection that M helped me choose a few to take with us for afternoon tea at our friends’ house and was particularly keen that the man of the house had the chance to taste the allergy-friendly chocolate and orange torte.

Cafe Nouveau really was a most remarkable find and one that the whole family would happily recommend to anyone eating out with food allergies. It is part of a very small development on the edge of 30 acres of parkland that also includes 4-star Bed and Breakfast, The Lighthouse. Susan and her team open the cafe from 7am to provide breakfast for The Lighthouse’s guests as well as other customers, something that I absolutely love as it would save the need to pack boxes of cereal and cartons of safe milk on our travels.

Our marks: 9.5/10

The many faces of friendship

Good friends have become a valuable commodity for our family over the years, something I have written about before and no doubt will write about again, but a few events over the last couple of months have made me realise yet again just how important these friendships are to us. In each case, the thoughtfulness of those friends turned what could easily have been difficult experiences into ones that were a little less stressful, something I always appreciate, but most of all at the moment as we deal with new school years, new medical teams and new jobs. Some of these are old friends, people I’ve known since my own school days who still play an important role in our lives, whilst others are those we’ve got to know as G and M build their own relationships with their classmates, but it doesn’t matter how long we’ve known them, they’ve been there to make a difference when it mattered.developing-friendship-machines-working-word-building-up-concept-construction-black-alphabetic-letters-forming-isolated-31326540

The first event was one of the most stressful I’ve had in a long time and even with this wonderful friend stepping in to help out, it was an experience I would have much preferred to do without. My Mum was away enjoying the wonders of Russia, Mike’s parents had flown home to Canada and Mike was back at his work, which is over an hour away from home even when the trains are running in his favour. For once I hadn’t left leaving work to pick up the children from school to the last possible minute and everything seemed to be under control, so naturally that was the point when everything suddenly went horribly wrong. My car wouldn’t start. Not only would it not start, but even with the engine turned off, the electrics seemed to have a mind of their own and the ignition refused to release my key. Even on the best of days this wouldn’t have been a good thing, but poor G had already had to disappear to the school library for an extra hour after school and I was now left with the dilemma of how to get home and get both kids without a car. Thank goodness for a good friend in our village, in the shape of the Mum of one of G’s friends, who kindly agreed to pick up M from his school, send her daughter to rescue G from their school and hold on to them both until either Mike or I was able to take them home. Her calm acceptance of the situation worked wonders on my frazzled nerves – I had by this point already phoned Mike in tears to tell him that not only had my car broken down, but that I was close to breaking down too – and reassured me that there was no need to panic as all I needed to do was get myself safely home. A couple of hours later I’d been rescued by our local garage and I rescued this friend from having to put up with my excitable duo for too much longer. It probably didn’t seem like much to her, I know it’s something I’ve more than willingly done for other Mums in the past, but it really did make a car-wont-start-186299740-e1431698432132bad situation a whole lot better and helped dampen my panic down to just concerns about how exactly we would manage without a car at all, given we’ve become a 1 car family over the last 6 months (and yes, I can be something of a “glass half empty” person at times and this was definitely one of them). Fortunately, the problem was nothing more than a flat battery and within 24 hours, it had been replaced and normal service had been resumed.

Fast forward a few days to when one of M’s friends brought a smile to his face with a small gesture that made the world of difference to my currently very sensitive lad. As I’ve mentioned recently, M has a well-stocked swap box in the classroom to ensure that he never has to miss out when his classmates bring sweets or treats into school to celebrate their birthdays. M has
become accustomed to swapping out the sweets for a non-edible treat of his choice, but I know that he misses the days when he used to be able to join in just like his friends and could eat a far wider range of foods. He had already brought home a number of Hero Attack trading cards for other birthdays, but I was met at the gate last week by a small boy hqdefaultwith the biggest smile on his face. This good friend and his thoughtful Mum had remembered that M can safely eat Foxes Glacier mints and so had taken a handful of those in for M, whilst the rest of the class enjoyed another brand of sweets. M was thrilled about being treated just like everyone else, his teacher was pleasantly surprised by this thoughtfulness and I was touched by this small step to include him in the thrill of the celebration.

Finally, we come to a recent Sunday afternoon spent with old friends and their family enjoying the chance to chat, play and share a meal. This is a friendship that has lasted over 25 years and which made them an obvious choice when we were choosing G’s godparents nearly 13 years ago. We arrived early afternoon allowing the children plenty of time to hang out and play together, whilst the adults enjoyed some much-needed catching up of their own. We talked about recent job changes, secondary school decisions and summer holidays as well as the ongoing saga of M’s health and hospital care; and before we knew it, dinner time had arrived. To our surprise, and M’s absolute delight, this wonderful couple had decided to cook a dinner that was completely M-friendly for us all and so we sat down to enjoy chicken kebabs, chicken goujons, rice, cucumber and some delicious applesauce together. friends-meal-jpgM felt a part of the proceedings in a way that was fantastic to see and when pudding arrived on the table – a safe baked rice pudding with more lashings of the applesauce – he was beyond ecstatic. That simple show of solidarity with our boy was amazing to see and whilst they didn’t think twice about doing it, was a thoughtful gesture that made an impact on us all. M didn’t feel that he was missing out on anything the others was eating and it perhaps gave them a small insight into what he lives with everyday.

As you can see, friendship has many faces and each of them, in their own particular way, makes a difference. I don’t think any one of those individuals thought they were doing anything out of the ordinary or extreme, but without those gestures our life would be far more challenging and a lot less fulfilling and colourful than it is.

School Dinners

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.

Allergy Blog Awards UK 2017

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

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?

A Survival Guide For School & Allergies

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

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.