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.

World Prematurity Day 2014

premdayHow time flies.  A year ago I discovered – a day late – that November 17th marks World Prematurity Day; this year I’ve contributed to an event that will help bring awareness to this occasion.  During the year I have joined a FB group that is dedicated to those babies who spent time in our local NICU and the stories of their survival against all odds are amazing to read.  This morning, the support network run there for NICU parents, held a coffee morning for those currently living on the unit, which was accompanied by a board displaying photos of past NICU graduates, including G and M.  The request was for “Then and Now” photos to share on the corridors of the unit to celebrate how far they have come and to give hope to those starting their journey.

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The statistics are staggering.  Around 15 million babies will be born prematurely around the world this year, 60,000 of those in the UK.  In your average classroom of 30, there are likely to be 3 young people who arrived earlier than expected, some of whom will have slipped into a different year group and are now amongst the youngest in their year, rather than one of the oldest.  In one way or another, these youngsters will have challenged the doctors and nursing staff who dedicate their lives to caring for preemies, continued to strive to grow and succeed and will go on to do much bigger and better things than was ever imagined at the start.

Mike and I will be forever grateful for the amazing care that was given to both G and M during their time on NICU and feel privileged to have met such wonderful, caring medical staff whilst we were there.

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They’ve come so far since their NICU days

 

Busy days

Now that Halloween and Bonfire night are behind us and Christmas is fast approaching, there’s finally a little time to look back and reflect on the start of the new academic year.  September seems like a lifetime ago and yet was a busy month with appointments right, left and centre that have had a lasting impact on decisions about M’s long-term care.  We had appointments with GOSH, a new community paediatrician, M’s OT and with CAMHS; and I needed to be the thread that linked them all to ensure that M remained at the centre of their focus and that all agencies were working together to provide the best support they could.

Courtesy of travaasa.com

Courtesy of travaasa.com

The OT’s review was everything we needed it to be and she has already started going into school once a week to work with M on his handwriting skills.  The clinical psychologist he meets with fortnightly through CAMHS is slowly building a relationship with him and gently pushing him to talk about how he feels about life with EGID and the frustrations he experiences.  As for the new community paediatrician, who was recommended by our local hospital, well, lets just say we won’t be rushing to meet with her again.  Her complete lack of understanding of his condition was glaringly evident as she suggested that regular toileting and a sticker chart were the answers to all our problems.  How I refrained from saying something very rude is nothing short of a miracle!

The most important of all these, for us, was our regular appointment at GOSH with the gastro team charged with M’s care.  The restricted diet and increased medications over the last 3 years have not brought about the results we’ve been aiming for and M continues to be symptomatic a lot of the time.  We have become increasingly concerned about his emotional well-being as he struggles with the impact of EGID and multiple food allergies on his daily routines and I was determined to come away from that appointment with a tangible plan in place.  Despite our best efforts with the challenging treatment suggested by the local consultant leading into the summer, our worst fears were realised when the registrar told us that M appeared to be impacted again and we would need another course of fairly heavy-duty laxatives to empty his bowel.

planningThat led into a lengthy discussion about where we’re headed and what the most sensible next steps for M’s care are.  Short-term plans are all well and good, but we now need a long-term care plan put in place.  He agreed that we can’t keep limping from one appointment to the next and promised to discuss M’s current situation with our consultant.  Medical terms such as “pellet study“, “elemental diet” and “manometry” were bandied around and I am glad that, thanks to the support from other FABED families, I have a reasonable layman’s understanding of what all these terms actually mean.

We left the hospital feeling that we were beginning to making some progress in dealing with the problems that continue to dog M’s every step and a short-term plan that would start to deal with the current impaction issue.  The longer term decisions would be discussed both internally and with us before anything was settled on for definite.  A follow-up appointment with the consultant herself was made and our step was just a teeny bit lighter as we felt our concerns were being heard and addressed.

Courtesy of abercrombierealestate.com

Courtesy of abercrombierealestate.com

However, since that day, over 7 weeks ago, I have spoken to GOSH at least once a week and almost daily over the past 10 days.  The improvements expected haven’t happened and so the decision has been made to admit M into the hospital for further testing.  We need to understand whether his bowel is working as it should or not as that will give us a clue as to the direction we need to head.  We have also agreed with his consultant that the diet and medicines just aren’t helping his hugely allergic colon and so have made the decision to remove all food from his diet and follow the elemental diet via NG-tube for a while.  This should give his bowel and body some much-needed time to rest and recuperate, something I believe it so desperately needs.

Armistice Day 2014

We Shall Keep the Faith

Moina Michael, November 1918

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 Oh! you who sleep in Flanders Fields,
Sleep sweet – to rise anew!
We caught the torch you threw
And holding high, we keep the FaithSAM_2193
With All who died.

We cherish, too, the poppy red
That grows on fields where valor led;
It seems to signal to the skies
That blood of heroes never dies,
But lends a lustre to the red
Of the flower that blooms above the dead
In Flanders Fields.

And now the Torch and Poppy Red
We wear in honor of our dead.
Fear not that ye have died for naught;
We’ll teach the lesson that ye wrought
In Flanders Fields.

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Just when you thought it was going to be easy…

…something happens that shows you that it really doesn’t pay to be complacent, especially when it comes to children with complex medical needs.  The reason for my most recent angst? The whole ‘flu vaccination thing! Yes, you probably read my blog post over a month ago, where I discussed the decision process we were going through regarding M and the ‘flu jab, and almost definitely concluded by the end that everything was set firmly in place.  Having visited our new GP, I certainly felt that we had agreed what was best suited to M’s needs and was now just waiting for the confirmation phone-call and a date for my diary.

You’ll have guessed by now that it hasn’t been that easy and whilst that doesn’t come as any surprise to me when it concerns my youngest, the complexities of getting the situation sorted came at a time when, to be perfectly honest, I really didn’t need the added aggravation.  It all started when I phoned the surgery to book the appointment.  The receptionist needed to discuss which clinic to book M into because he was having the injection and not the nasal spray and so referred him on to the practice nurse, with a promise she’d call me back.  10 days and 3 phone-calls later, I was still waiting for the practice nurse to confirm which clinic M needed to attend.  Oh, and there was the added problem – or so I was told – that there wasn’t enough child vaccines in our health centre, so we would have to wait for those to arrive before I could make a definite appointment.

This is definitely a t-shirt us #EGID parents need!

This is definitely a t-shirt us #EGID parents need!

The string of events that followed are like the plot of a bad 1980s sitcom as we got bounced from one local medical establishment to the next.  The first problem was that the no egg vaccine is not licensed for use in under-18s and so the nurse wasn’t happy to give it to M, especially as he’s never had the vaccination before.  She was keen to discuss the situation further with one of our local hospitals and so I agreed to wait.  Next, I had a message telling me that the hospital would give M the injection, so that he could be monitored and could I confirm that I was happy for my contact details to be passed onto the appropriate administrator to arrange that appointment.  Needless to say, I confirmed as soon as I could and then sat waiting for the next installment in this latest saga.

Three days later, a copy letter arrived in the post from the community paediatrician, who has met M once, knows very little about him and just confirmed that he could have the ‘flu vaccination unless Mike and I knew of any reasons why he shouldn’t have it.  Er, no – after all, we’re the ones requesting he be given the damned thing.  A week after that, another phone-call from our local health centre, advising me that the local hospital won’t give M the injection because his 2009 blood tests didn’t show any sign of an egg allergy.  WHAT?!

Now, don’t get me wrong, M does not suffer an anaphylactic reaction to egg, rather a delayed non-IGE one, so I can understand that they don’t think it necessary to be monitoring him on the ward; but blood tests from 5 years ago are hardly a good basis for any medical decisions made in my opinion.  In the 5 years since those blood tests were carried out, he has been treated by GOSH, had a diagnosis of EGID and we have established that he struggles with several food allergies that, because of the very nature of his reactions, will never show up in the standard blood tests.

The next part of the conversation however, really took the biscuit for me, though I don’t blame the poor receptionist tasked with phoning me to make the relevant arrangements:

 

As his blood tests were negative, the hospital have said he can have the ‘flu vaccine here, so I can book him into this Saturday’s clinic for the nasal spray.”

“Um, no he can’t have the nasal spray because of his egg allergy and the nature of his underlying chronic illness.”

“Oh, well the hospital said he could have it as he doesn’t suffer an anaphylactic reaction, so they want him to have the nasal spray here.”

“Well,” – (a somewhat hysterical tone starts to creep into my voice) – “Great Ormond Street have said he needs to have the injection, so I think we’ll follow their advice as they understand his medical needs.”

“Right, so you want him to have the injection?” – (she’s now slightly perplexed) – “Well, I’ll have to check which clinic I need to book him into.  I’ll call you back.”

womenonthebusinessstage.co.uk

womenonthebusinessstage.co.uk

Have you ever felt like you’re going in circles?  Five weeks on from my original GP appointment and I was right back where I started and M still hadn’t had the ‘flu vaccine. I was even beginning to question just how important it is for him to have it, given he hasn’t had it before, but GOSH had recommended it as a good idea for him and I wasn’t prepared to give up at the first hurdle.  Fortunately, the receptionist was as good as her word, has booked him in for appointment after school one day next week and has left a note on the system for the nurse at that clinic to review his medical history before he has the injection.  Of course, I’m trying not to panic that she might take one look at his notes and refuse to give it to him, but at least we’re making steps in the right direction at long last.

Time for a Dyspraxia update

Over the last 18 months since we received a diagnosis of dyspraxia and visual dyslexia for M, he’s been making some progress and it was good to have a review this week with his Occupational Therapist to see just how far he’s come and what he should be aiming to achieve next.  When he was first assessed, it was noted that he had significant issues with his upper body strength, which was leading to weaknesses with his fine and gross motor skills.  He struggled to hold his cutlery or pencils correctly, couldn’t tie his shoelaces, wouldn’t tackle riding his bike and had handwriting that, at best, bore a passing resemblance to ancient hieroglyphics, assuming they’d been scrawled out by a spider meandering meaninglessly across the page.

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Shoes tied by M

Meal-times have become easier, thanks to the sets of caring cutlery I invested in soon after we met his OT for the first time.  M has grown in confidence as he’s mastered the co-ordination needed to cut up his food himself, although constant reminders to actually use his cutlery are still a main feature at our dinner table!  After a year of having to ask for help to tie the laces on his football boots, M decided he was going to crack that challenge over the summer and having so determined, succeeded quicker than any of us expected, himself included, and was rewarded by 2 new pairs of trainers – with laces – whilst we were out in Florida.  As for the bike, well it’s still something of a no-go area for M right now, but the draw of being able to cycle to his godmother’s house along our local cycle-path, may be all the impetus for learning that we’re going to need this autumn.

However, the one skill that still needs a lot of work is that of his handwriting and was the key area for my discussion with his OT yesterday.  Over the last few weeks, I have been trying to track down some additional support with his literacy skills as we have become increasingly concerned that his school-work will start to suffer if an improvement isn’t made soon.  I contacted both our local Dyslexia Centre and the local branch of Dyslexia Action, to find out what support might be available to M and similar answers came back from both.  There was an opportunity for weekly, 1 hour small group sessions to develop his writing and literacy skills, but although it sounded good, there inevitably was a downside.  The sessions are only run during the day, Monday to Thursday, which would mean that he would need to miss around 2 hours of school a week, by the time you allowed for pick-up and travel.  As the helpful Dyslexia Action representative warned me, “You’ll have to get the school on board first, as they may be reluctant to allow him to miss that much school each week.”

I mused over the decision and discussed it at length with Mike.  Whilst we both know that the time is critical for M right now and he really needs that support, we are also waiting for an admission to GOSH, which will mean at least a week off school.  On top of all his other regular appointments, I felt that it was just too much time absent from his friends and his learning and so decided to put this plan on a back-burner for the time being until we have some more information about the admission.

At this point, like some sort of guardian angel, his OT expressed her own increasing concerns about his handwriting skills and suggested the perfect solution to our dilemma.  She has offered to visit M in school for an hour a week for 6 weeks and will work with him and a member of staff, teaching him how to properly form cursive handwriting and write in a size that makes his writing legible.  handwritingShe will make sure he is sitting correctly, holding his pencil in the right way and knows how each letter should be formed.  His class teacher has said that M is reluctant to use cursive writing, believing that he needs to print instead, so the OT will show him some examples of work from other children she has worked with to convince him that this is the way to go.

I am so delighted that this is being offered by an OT who is as concerned about M’s handwriting and the impact on his learning as we are and, what’s more, wants to actively do something about it. As well as teaching M the skills he needs, she will also be teaching the member of staff about what he needs to be doing in class and how they can encourage him to continue the good work once her 6 weeks are up.  M’s SENCo, who also just happens to be his class teacher this year, has already agreed that the school are happy to accommodate the OT’s visits and now I’m just waiting for confirmation of when the sessions will start.

10 years on

A lot can happen in 10 years and certainly has in our household.  In the past 10 years we have moved house twice; had 2 amazing babies and seen them grow into beautiful children; finally got a series of diagnoses that have explained so much about M’s fragile health and will help him grow stronger in time; changed jobs more times than we care to consider and are finally in ones that we love; and travelled the world, though perhaps not as much as we’d have liked.  Sometimes, in the busy lives we now lead, it’s hard to stop and remember things and people from the past.

Today is a landmark day for me, one that I can hardly believe has arrived and one that has seen my emotions bubbling over beyond what I expected.

10 years ago today we said goodbye to my Dad.

One of the few photos we have of Grandad and G

One of the few photos we have of Grandad and G

I was the quintessential Daddy’s little girl growing up and constantly sought his approval and praise in the things that I did.  I know he was proud when I graduated university despite the complications of negligent eye surgery at the start of my final year and he helped me study to pass my accountancy exams just 3 years after I got my degree.  He walked me down the aisle nearly 15 years ago and marvelled at the arrival of his first grandchild a few years later.  I am so grateful for all the precious memories I have with him and yet find myself grieving for those that he never had the chance to become a part of, to share.

Today the children and I have been out in the unseasonably warm autumn air to visit Grandad’s plaque, placed on a neighbouring pier, and left some flowers and sprigs of rosemary – for remembrance – to mark that place.  We talked a little about him and I shared some memories of the grandfather they never got to know and love.  And tonight, Mike and I will be lifting a glass in his memory as yet another year without him slips past.

Courtesy of visitedscotland.com

Courtesy of visitedscotland.com