Tag Archives: bullying

NEAW2017 – Resilience

Resilience: the ability to become strong, healthy or successful again after something bad happens.

What an amazing quality to possess and one that we’d all to like to develop, especially when times are tougher than we ever imagined they could be. Without a shadow of doubt, the EGID diagnosis has forced us all – and by us, I don’t just mean our family, but all those families living with EGID – to become incredibly resilient, even when we’re dealing with bad situations that have nothing to do with this illness itself. During last year’s NEAW, I wrote about being an EGID Mum and the heartbreak that I had been struggling with because of M’s broken leg and the lost opportunities that resulted from it. This year, the current uncertainty surrounding the validity of the EGID label has once again pushed Mike and me to our limits as we grapple with the challenge of managing the health of our child, physical and mental, whilst also dealing with the unavoidable “elephant in the room” of that unanswerable question mark about his diagnosis whenever we attend gastro appointments that seem to try and avoid using EGID as a valid reason for his current struggles. We are not the only parents who find themselves in this position as conversations amongst our EGID friends and extended family show.

Life has taught me to be resilient, to be a strong woman who’s not afraid to face up to whatever is thrown at me, even if sometimes I need to pause and take breath before I can fully deal with it all. It sometimes feels as if I’ve been put through more than most: my T1D diagnosis on my 9th birthday, losing my Dad before he had a chance to get to know my children and the threat of further sight loss last Christmas; and yet somehow I’ve managed to find my way through it all. As a family we’ve certainly had more than our fair share of chronic illnesses to contend with – T1D, EGID, Cancer, Parkinson’s, MS, Alzheimer’s disease to name a few – but they’ve taught us all one thing: that we can survive. In fact we can do more than survive, we can still have positive, purposeful lives and can definitely live and enjoy life to the full.

As a Mum, I’m proud to see the resilience that my children are building themselves, even though it is heartbreaking to realise the reasons they’ve needed to develop this character trait so early on. But their unquestionable resilience to life’s challenges, doesn’t mean that they are immune to the insensitive, hurtful and thoughtless comments of others as became patently obvious this week. M is going through a tough patch right now and we don’t really know why. We expected the anxiety of his SATS last week to affect his gastro health and returned to his simple 6-food diet to try to reduce the stresses on his body. This week has seen a real relapse in many of his symptoms and we’re struggling to see the light at the end of this immediate tunnel. I know, in that way that Mums do, that this change in events was playing on his mind, but I didn’t realise just how much until yesterday.

Yesterday, we were talking about his school year group and in particular, the jokes and insults currently being traded amongst the Year 6 boys. I reminded him that he needed to ignore those comments as best he could and instead focus on the strengths of his friendships and the fun they’re now having that SATS are finally out of the way. It was then that he paused in reflection before saying:

…I know Mummy, which is why I’m sure X was making it up when he said that his Mum had said that she’s sick of seeing me in the local paper all time because I haven’t been and anyways, I don’t think that his Mum would have said that….would she…?

I had to take a moment to compose my own thoughts before giving a careful and considered reply because I knew that the very fact that he had mentioned it to me meant that he was more bothered by this seemingly throwaway comment that he wanted to admit. In all honesty, I can’t answer why that Mum said that, though I can make some intelligent assumptions behind her reasoning and am certain that she never expected her child to come into school and say it directly to my son. It just shows that we need to be careful about what we say to, and in front of, our children and encourage them to be kind in their words to others.

I reminded M that our intentions are good. We’re actively trying to raise some much-needed awareness about EGID and that the annual fundraising events that he’s held at school have been the result of us proactively asking to organise them. I’m not ashamed to speak out loud about a condition that impacts us every day and I don’t want M to feel that he needs to hide the reality of what he goes through. However, he also knows he can share as much or as little as he chooses about his daily life and that there will never be pressure from us to do more than he’s comfortable with doing.

We’re lucky. Having spoken out loud to me, and then later to Mike, about this comment, M has forgotten all about it and has happily got on with the rest of his week. His ability to bounce back after a ill-considered remark that obviously cut deep is admirable and truly reflects the resilient young man he is growing up to be. Today both children have proudly gone into school wearing an element of pink to raise awareness amongst their friends. M’s “Dress up as your hero or superhero” day for Over The Wall is currently under way and he was excited to see what his friends would be wearing – he has gone as his very own hero, Ryan (the doughnut man) from Borough22. Most of all, we’ve all done our bit this week to show this disease just how resilient we are and I’m proud to acknowledge that many in the global EGID community have done so too.

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.

Beating the Bullies – Anti-bullying Week 2014

November’s proving to be a busy month, what with Armistice Day (11th), Children in Need (14th), World Prematurity Day (17th) and this week it’s the turn of Anti-bullying week (17th-21st).  The aim of the week is to raise awareness of bullying and encourages children, young people, schools, parents and carers to come together and work towards stopping bullying for all.  There are no official statistics about the prevalence of bullying across the UK, but recent reports state that almost 45,000 children spoke to ChildLine about bullying during 2013, a worryingly high number and one that’s unlikely to scratch the surface of the problem.

Bullying is defined as Repeated incidents of physical or mental abuse (teasing, taunting, name calling, threatening, isolating) of a weaker person by a stronger person.”  Stronger is not necessarily defined by size, but also includes those who are more confident or more able to pinpoint a weakness in the person they are victimising. The sad reality is that this naturally makes disabled children or those with special educational needs a prime target for bullies and they are more likely to experience bullying in school and in the wider community that other groups.  The focus of this year’s campaign is to eradicate bullying for these vulnerable individuals in particular.

This focus has struck a particular chord with me this week as M has been dealing with some bullying over the last few weeks at school.  Some of the boys in his class have been teasing him about his allergies by saying that they are allergic to him and then pretending to be physically sick. This has had a knock-on impact in the playground, where the same children have then been avoiding playing with him, leaving him feeling isolated and on his own.  He has some good friends, who have stuck by his side and defended him when he’s felt unable to do it himself; and his big sister has lent her support too by watching out for him whenever she can and inviting him, and his friends, to join in games that she’s playing with hers.

Unfortunately, M’s complicated needs – dyspraxia, dyslexia, EGID and food allergies – make him an obvious candidate for attention from bullies, who only need the smallest difference to focus in on and attack. We’ve taught him to stand up for himself without being aggressive or rude, to ignore whenever possible the comments made and to walk away when the going gets tough; but it’s not an easy issue to tackle.  Right now, he’s anxious about their response when he finally has his tube fitted and is even worrying about how things will go next year, once G has moved on to secondary school.  Don’t get me wrong, his teacher and the school have been proactive in dealing with the bullies, but they can’t take away his fears or his belief that he’s not being heard.

Sadly he’s not on his own.  Children with complex medical needs can feel isolated by their illness as they struggle with feeling different and the questions of why they can’t be like their friends or why they are so frequently absent from school.  Even those with better known conditions, such as T1D or asthma, may have limited contact with others of the same age who are dealing with the same issues and I can only imagine how much harder it is for those with rare illnesses, who may know no-one else with the same diagnosis in their area.  A lack of true understanding about their medical needs and the impact on their everyday life can add to their frustration and the sense of being on their own.  Adding bullying to that already tumultuous mix is often a burden too many and these children may head into a downwards spiral that can result in poor self-confidence, depression and even self-harm.

What can we do?  I don’t have an easy answer to that difficult question.  As a parent I can educate my children to respect the differences of their peers and not to belittle those who don’t conform to society’s notion of “normal”.  I can encourage them to enjoy friendships with everyone and not just those who have similar interests or hobbies.  I can teach them that sometimes they won’t see eye to eye with their classmates and that those differences of opinion is what will challenge and shape their own beliefs.

And as a parent to children who stand out from the crowd, I can help them find their feet in our world, to stand strong when challenged and to see the value in their very uniqueness.