Tag Archives: local community

NEAW 2017 – No man is an island

Sometimes, when you’re stuck in the midst of the relentless demands and emotional turmoil of a chronic illness, it’s difficult to see beyond your immediate reality and nearly impossible to believe that anyone else can even begin to understand how you’re feeling at that moment in time. It is no surprise that the one with the diagnosis often becomes self-centred and self-absorbed as their illness dictates every facet of their life and it can take a long time to really grasp that there are others out there who can empathise because of their own struggles and experiences. It’s all too easy for the focus of family, friends and the outside world to be focused fully on the individual and often the others affected by the diagnosis are left to struggle on their own by the wayside.

Over the years we have worked hard to try to give G the attention she deserves and it’s heartbreaking to realise that there are more times than I care to admit where we have absolutely failed to get that balance right. M’s ill-timed admissions over G’s birthday for 2 years in row were a bitter pill to swallow for us all and nothing could really make up for the disappointment of spending her 12th birthday too many miles apart. Encouraging G’s involvement with our local Young Carers group and the GOSH YPF as well as applying for her to be a part of the Over The Wall siblings camps have all been important steps in recognising the impact that M’s health challenges have had on her over the last 13 years and supporting her to find her own identity that is completely independent from him. It is an ongoing process for us and Mike and I will continue to strive everyday to support G as much as she needs, especially as the emotional roller-coaster of her teen years starts.

Just as our family is affected by M’s EGID diagnosis, so too is the community that surrounds him. I have mentioned so many times the amazing village school that both G and M have attended and everyday am grateful for their unfaltering support. Since M arrived at their gates nearly 4 years ago, they have willingly taken on the responsibility of dealing with a child with complex additional needs, not just medical but educational too. They have allowed both children, and us, to promote NEAW and their continued support with our fundraising efforts has been fantastic. I regularly read about the problems other parents with EGID children are facing in their schools around the UK and I know that we’re incredibly lucky to found this little gem. M has been able to attend school with a feeding tube, a broken leg and an extremely restricted diet and his attendance is remarkable for a child who has been through so much in so short a time. His Year 6 teacher has been fantastic at encouraging him this year when the prospect of SATS has caused him unbelievable anxiety and she has put up with a plethora of emails as I’ve tried to iron out the biggest wrinkles in a stress-filled few months. His classmates have similarly been an irrefutable source of encouragement and his move up to secondary school in September will be eased by their presence in his life.

We do not live in splendid isolation and every action we take has a ripple effect that can stretch out further than we can ever imagine, especially as a child. We are extremely lucky to have a community that works with us to help both children have the childhood that they are entitled to enjoy, one that is all too often marred by the difficult reality of chronic illness. As G and M grow older, my hope is that the realisation slowly dawns that whilst everyone’s life is unique, there are moments that teach us all lessons that can help us reach out to and empathise with others. Going to Over The Wall camps has shown both children that, despite those times when they feel isolated, there are others in the bigger world that do understand what they’re feeling, what they’re living and who can perhaps help them learn to survive even the darkest of emotions; and that when they have survived their own dark place, they can reach out to others who need to be brought back into the sun.

This year we have decided to continue our support of the amazing charity, Over The Wall and their camps. If you’re able to donate even a very small amount, please follow this link to my Virgin Money Giving Page where your donation will help more children living with chronic illness like G and M by giving them and their families a chance to enjoy some much-needed time away from it all.

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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.

And the money kept rolling in…

Every year when National Eosinophil Awareness Week rolls around, we start thinking about how we’re going to raise more awareness about EGID, particularly in the public eye. During that first year, our focus was all about our awareness as a family and understanding more about how his diagnosis with this rare condition was impacting on M’s everyday life. As time has passed, we’ve looked for different ways to spread the word, reaching out into the wider community and have found that our efforts have naturally evolved to encompass an element of fundraising as well. Whilst the focus of NEAW is rightly about otwmaking sure more people know about this condition and what it means to be living with it, and donations of time are as valuable, if not more so than those of money, we know that any money we can raise will make a difference to the charities we choose to support.

This year we wanted to show our appreciation for the amazing work done by Over The Wall in running camps for children with serious health challenges, their siblings and their families. The truly fantastic week away that G enjoyed at Easter made an incredible difference to her, perhaps even more than we realised at the time. During a recent conversation with G and M about the Allergy UK Hero awards, we got to discussing the reasons why we might nominate each other for an award. To my surprise G stated that my efforts at finding out about and then sorting out her week away at camp was the best example of how I had made a significant difference to her life as an allergy-sufferer and sibling to a chronically ill child. That comment, for me, sums up just how significant the opportunity to have time away from the stresses and strains of life at home with M and to just be a child really was to her.

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During May, I started to document how our fundraising efforts were going and the different opportunities I had found to raise even more for our chosen charity. We had fantastic support from M’s school, who helped him raise an incredible £81 for OTW and through stalls at local community events and generous friends and family members, we raised another £172. Even better, we still have two fundraising plans in the pipeline, both of which came as something of a surprise to me, albeit a wonderful one. The first came when we were part-way through NEAW16, when I received an unexpected phone-call from the Head of Year 7 at G’s secondary school. Thanks to the continued support from our local press and a well-timed article in the local paper, she had a proposition that overwhelmed me and almost rendered me speechless. Year 7 had an enrichment week coming up after May half-term and, as a lead-in to their week of activities, the year group would be having a non-uniform day on the previous Friday. Her suggestion was that the school would use the day to help us raise awareness of EGID and that the money collected on the day itself would be donated to OTW. indexThe reasoning behind this plan was simple and easy to understand: G and M. They wanted to show support to G as one of their own and, knowing how much she had benefitted from her week away and recognising her commitment to supporting M during NEAW, believed that this was the perfect opportunity to do it.

I was more than happy to agree to this proposal and G was soon on board too. She was asked to write a small piece about EGID, NEAW and OTW that would be shared during tutor time on the Friday morning and each tutor was asked to show their group the short film G and M had created for the week. A well-researched, well-written and fully comprehensive letter was sent out by the school to all families explaining EGID and the charity that the money given on the day would be going to.

This week a cheque was presented to G during the weekly Year 7 assembly for an amazing £280, or thereabouts. The Year 7 Head told me that there were several donations made that exceeded the suggested £1 because the funds are going to a charity that have already helped G and M – something I can’t thank my fellow parents for enough. This money will make a difference to Over The Wall and it’s great to feel that we’re giving a little back. It means that so far we’ve raised an astonishing £530, or thereabouts, which covers half the cost for a child to attend the OTW sibling camp. I don’t know what our final fundraising total for this year will be as there is still one event left to go in August, but I’m glad that we have been able to make such a success of our efforts so far.otw

NEAW 2016 – All over for another year

With a blog post a day for the last 7 days as well as daily mini fact updates via my FB page, you’d think that I’d be glad that the EGID awareness week has finally drawn to a close. There is, I admit, a certain relief that the busyness of the week is over and I can at long last pause and take a breath, but just as EGID is a constant presence in M’s life, so raising awareness of it will continue to be an important part of our family’s life. A good friend and fellow EGID Mum has asked me to share her reflections of last week, which I am delighted to do as, as she says in her final line, “Knowledge is important this week and every week.”

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National Eosinophil Awareness Week 2016,

A time to share personal experiences,

Taking time to tell others what it’s like to live with or care for someone with an Eosinophilic Gastrointestinal Disorder (EGID)

Inviting those who have never heard of EGIDs to find out more,

One way to help raise awareness,

Not for self but for others as we are,

All in this together, the EGID community, so,

Let me tell you a little bit about what it’s like to be the mum of a child with EGID.

 

Elevated levels of eosinophils in the gastrointestinal tract are often disorder indicators,

Often this will mean that there will be pain and possibly inflammation,

Sometimes this will mean that there is a need to exclude foods; sometimes many, sometimes all,

Ige or non-IgE mediated food allergies may also be present, but not always!

Naso-gastric tubes and elemental nutrition may be the only way to manage symptoms,

Often the only option for many is a feeding tube as the body struggles with food proteins,

Pain, discomfort, nausea, altered bowel habits are just a few of the symptoms,

Hospital visits, hospital stays, invasive tests, medications and restricted diets become a part of life,

Illness can be socially restrictive; days, weeks or months may be lost to ‘flares’,

Life can be difficult for those diagnosed with EGIDs.

 

Awareness aids understanding of EGIDs,

Watching what you eat, if you are able to eat, is central to managing symptoms,

Avoiding known triggers, being a food detective, scrutinising labels, are also key skills that need to be developed,

Research is important; finding a cure and raising awareness of what it’s like to live with an EGID,

Education is also key to raising awareness and understanding of the impact of EGIDs,

Networks are central to enabling those with EGIDs to feel supported by those who understand

Eating … when food is the issue, is an issue …,

Support from others; a community of people who understand what it’s like when someone is diagnosed with an EGID is so important,

Societal understanding though will help those with EGIDs to engage more with their communities.

 

We hope for a future where the disorders are better understood, when we don’t have to fight to be heard,

Enabling those with an EGID to share their experiences with others can help this,

Eventually we hope for a cure or better ways to manage the disorders,

Knowledge is important this week and every week; please take a moment to read some of the stories shared by those living with EGIDs.

Our thanks go to…

The week is winding down and I am definitely looking forward to the start of half-term and the chance to have a sleep-in over the weekend.  One’s thing for certain, being active in raising awareness whilst eating a restricted diet really takes it out of you!thank-you-languages

With T for Thanks being our topic for today, what else could I do, but issue a few heart-felt thank-yous to those who’ve made a difference to us in the 12 months since the last NEAW. It’s tricky to know where to start, but, in no particular order, I’d like to thank:

Our families – well it was a given really, wasn’t it?  But whichever side of the ocean they may live, our families have been there in whatever way they can 澳大利亚孩子-1202242and supported us in the tricky decision to move M to a NG-tube and the elemental diet.   We don’t know exactly what the next 12 months hold in store for us, but we can be certain that our families will be there every step of the way.

Our friends – another obvious lot, but again we couldn’t have survived the past year without them all.  Their help has been invaluable: from text messages to lengthy phone conversations; early morning G-sitting to late night conversations with a cup of tea; and much-needed hugs to unexpected hospital mail, every single gesture has meant more than they can ever imagine and helped keep us strong.

GOSH – our consultant, her great gastro team and, in particular, the fantastic nurses who work with such dedication on Rainforest ward. Their care for M back in December was just amazing and without them looking after us both and giving wise words and training, we’d have struggled even more with the reality of the NG-tube and the feeding pump.  We also owe massive thanks to M’s fabulous dietitian, Colorful solidarity design treewho is always at the end of the phone or the email and has given me lots of helpful recommendations as well as reassuring me that I’m doing things right when it comes to the whole food re-introduction thing.

M’s School – I am very aware of just how lucky we have been with the staff at M and G’s school. They have been so understanding of how life was changing for both children during this school year and have made every effort to look after them and help them feel happy and safe when at school.  5 of the teaching staff bravely took on the role to learn how to manage his feeding pump, which meant that I could return to my job, confident that they were competent in what they needed to do.  This week they were also quick to agree to M’s request to share his presentation to the rest of the school and every teacher made time to make sure their class could see it and ask any questions they had.  This school has done a wonderful job of nurturing both my children and I will be sad when G moves on to “big school” in September.

G – the best big sister that M could ever have had.  She’s loved her little brother through some of his darkest moods and, even if there’s a bit too much squabbling at times for my liking, she’s managed to continue to work on building a strong relationship with him that I hope will only get stronger in time.  She’s survived the challenge of SATs, maybe not without the odd tantrum along the way, and continues to strive to do her best at school and at home.  P1000121And my heart nearly burst with pride the other week when she announced at Stagecoach that M is her hero, because of how bravely he lives and copes with EGID.

Mike – I couldn’t finish without recognising the person who stands alongside me on this, the most challenging of journeys we’ve been on together, and is my strength when I’m feeling weak.  We’ve reached a harmony that enables us to take turns in being the strong one during appointments and I can’t think of anyone I’d rather be facing these decisions with.  He also understands my need to have some time to escape from the day-to-day grind of EGID and puts up with me disappearing off twice a week to choir rehearsals.

And thanks to all of you, who’ve kept reading my blog, put up with somemany…repeated requests on my part and have done an amazing job at sharing my posts on.  Your silent show of support is what helps keep me going, even when times are tough.