Tag Archives: special needs

And so it continues….

After last week’s unexpectedly busy week, I was hoping that this week might slow down a bit; or at very least, enough to allow me to draw breath and properly put some thought into my blog posts! However, things often don’t quite work out as planned, especially when you’re me and I’ve found that the roundabout hasn’t quite slowed down enough just yet for me to get off. There’s been little time to stop and smell the roses…or the coffee…the latter of which is probably more apt as it’s been huge quantities of the black stuff that’s getting me through each day right now.

With work full of “stuff” – legal, finance and HR bits and pieces to get my head round; Mike slowly winding down to his last few days in his current job and both children back at home after a fantastic week away for G (hurrah!) plus rehearsals for concerts, fundraising plans to finalise for Over The Wall and some rather meaty health/education issues to tackle for M, I can honestly say I’m looking forward to a quiet-ish weekend to tackle the growing piles of ironing that just don’t appear to be shrinking.

Whilst we’re in the midst of dealing with the challenge of school not really understanding all of M’s educational, physical and mental health needs, I found this wonderful image this week, which truly summaries what I want both him and G to remember and hold on to as they grow up. They really are so much more than their school achievements and exam results #kindhearts #generoussouls #greatfriends

Advertisements

Best. Week. Ever.

Back at the end of March, G was lucky enough to attend the amazing Over The Wall sibling camp and had the experience of a lifetime. I knew just how much of a success that week away from home had been almost the minute she stepped off the bus as she asked with fervour if we could apply for her to go again next year. The last few weeks have been filled with a mix of emotions as M was thrilled to learn that he had been offered a place on the OTW Health Challenges camp this August, but the ongoing drama with his broken leg left us questioning whether he’d actually be able to go (of course he would, it’s a camp for kids with health challenges after all), and take part  (well as best as his leg and determination would allow), and get from it as much as his sister had (we could only hope). Fortunately, the final fracture clinic appointment that saw M being given the all-clear and discharged from the care of the orthopaedic team fell on the Friday before IMG_0791[1]he was due to head off to camp on the Monday and the assurance of the consultant that his leg was at long last fully healed gave M the confidence he needed that he could fully participate in all the activities on offer during the week.

It was a major event in our household. It’s the first time that M has been able to go away from home without being with family; he’s never even had a sleepover because of his bowel problems and sleep issues and so it was unsurprising that our car journey to Dorset was eerily quiet as he struggled to get his anxieties under some semblance of control. It was a very pensive boy who clung to my hand as we found our way to the welcome desk to sign him in, although by the time I left around 2 hours later, with medicines handed over to the Beach Hut medical team and clothes unpacked and safely put away, he was starting to warm a little to his surroundings and had already enjoyed a hysterical couple of games of Guess Who? with 2 of the volunteers. Seeing the other children chatting and laughing as they arrived on-site, it was easy, even for me, to forget that these are children living with serious illnesses. Illnesses which are sometimes life-limiting and are always life-impacting. My child was one of them. IMG_0792[1]And when M commented on how comfortable his bed was compared to the ones in hospital I could see the volunteers in the room with us, both of whom were new this year, take a deep breath, unexpectedly shaken just a little by this vivid reminder that every child there is facing a chronic illness that is not always obvious at first glance. I was not immune to the pathos of that situation and my heart broke a little that this was his first thought, his opening response to this new experience.

Knowing he was settled and in safe hands meant that I could leave the site almost without a backwards glance. I could see he was torn between wanting to give me a hug and kiss goodbye and not wanting to show affection in front of his new room-mates, so I offered a quick hug and a kiss on the head before heading back to my car, not giving him opportunity to wobble. Despite concerns to the contrary from other people, this Mummy was fine with leaving her boy there because I had absolute confidence that they would take care of him and support him and make sure he had a week where the medical implications of his everyday world were not at the forefront of his mind. The lack of communication during the week could easily have worried me senseless, but instead I knew that it really was a case of “no news is good news” as camp would only get in touch if things were going wrong. I was also confident that they were more than able to meet his dietary requirements and would make the effort to give him meals that were more than just simple rice and chicken. Not long after the end of G’s sibling camp, I menuhad been sent a draft menu for M that one of the camp chefs had devised based on his safe foods at the time and we were all drooling at the sound of some of the dishes. In the 2 weeks leading up to camp, OTW contacted me again to check whether there had been any changes to his diet and to reassure me that they were prepared for the challenge of feeding him whilst he was there.

I can’t even begin to describe how I felt when I picked him up the following Saturday. G joined me for the drive to Dorset and was able to share so many precious memories of her own as we went through the gates and along the drive towards the house. We pulled up to the grassed area which was ablaze with colour as the various groups gathered to wave goodbye to all the campers as they started their journey home. M was the last Orange Boy standing and the farewell given to him by the team volunteers saw more than one of us with tears in our eyes. Seeing this group of wonderful adults, who had become his family for the week, surround him and sing “M, we love you, deep down in our hearts…deep down….” to him with genuine affection brought a definite lump to my throat, not least because M was equally overcome by his emotions and obviously struggling not to give into them in public.

IMG_0812[1]As they lined up outside the car and waved us off, the atmosphere inside was in stark contrast to when we arrived as M sat smiling bravely, with tears rolling down his cheeks because he wasn’t ready to leave camp and go back home. He was emotionally and physically exhausted, but refused to let sleep overcome him, instead spending the entirety of our homeward journey sharing every tiny aspect of the week he’d just enjoyed. As M told us about camp, he was worried that he would hurt my feelings when he said that the chef cooked some delicious meals that were, in the most part, “..even better than yours Mummy!”, but I didn’t mind a bit. His close new friendship with one of the other boys in his team, who also had food allergies, meant that neither of them felt isolated as they sat next to each other as their food was served at each meal. And my heart swelled when he said he hadn’t really missed us or thought of us that much because he had been having such a good time as I understand that that was so much more than I could ever have wanted for his first experience away from home.

It’s hard to encapsulate just why this week was such a significant one for M, but it really has been an incredible and life-changing experience. For once he felt normal and not the exception in the group, and that alone is priceless to me.  M’s confidence has soared as he pushed himself, and his body, to the limit and tried new activities that would have scared him before and his honesty impressed me as he relayed just how terrifying some of those new experiences had been until he had a go and conquered those fears. He has developed more independence and an even greater awareness of other people that reflects more maturity than he had before. Yesterday he took responsibility for making his own breakfast and even asked G and me what we wanted to eat so he could make our breakfasts too. That may seem like nothing much, but for a child where the world really has revolved around his needs over the last decade, it was a huge shift in attitude.

My words cannot do justice to the time he had at OTW camp, but I know how fantastic it was as he is already asking if he can go back again – not just next year, but every year until he’s too old to be a camper any more. What’s more, his aim is to become a volunteer at camp eventually if he can. M expressed it best when he told me it had been the Best. Week. Ever.

 

The Italian Job

Sometimes you just need some time off; a week away from it all; an opportunity to have a break from the everyday, to just rest and relax and be. The thing is that that is hard enough to achieve when you’re a parent and near on impossible when you’re a special needs parent. The stress of leaving your chronically ill child with someone else, even when accompanied by a small novel’s worth of detailed instructions about what to do in every possible and conceivable situation, threatens to overwhelm and can seemingly be insurmountable for a day or two, let alone more than that. Mike and I are lucky that my Mum lives close enough to give us some nights off during school holidays, but those days usually mean longer hours at work for me as I attempt to make up time missed for hospital appointments with M and include only the occasional trip out to the cinema or for dinner somewhere where we aren’t tied to the essentials of chicken, rice and cucumber of our everyday menus.

Last December, in fact the day before M was admitted to GOSH for those disastrous food challenges, I received a Facebook message out of the blue from one of my fellow FABED Mums:

“Is that you that has won a trip to Italy with schar? Saw Twitter post? Congratulations x”

and have to confess that at that point I had absolutely no idea what she was talking about! A quick unscheduled peek at my Twitter feed and a long look at my e-mails later, I was stunned to learn that she was indeed right and I had won a 4-night stay in Italy thanks to gluten-free producer Dr Schar and the Allergy and Free from Show, Liverpool. It has taken a little while to put all the necessary pieces in place, but finally, last week, 6 full months since I first received that message, Mike and I left G and M in my Mum’s more than capable hands and jetted off for a much-needed break from it all.

IMG_0619[1]

Getting to that point did take some effort and there were last-minute wobbles before we finally left. It took an unbelievable amount of time to confirm the dates for our hotel stay due to the relaxed attitude of the Italian hotel staff and our flights were researched and scheduled by me once I knew the preferred airports for us to travel to and from. Two nights before we left, Mike questioned whether we really could go abroad given M’s current ill-health, but we trust my Mum implicitly and knew we needed to take some time for ourselves. That’s something that my Mum supported fully as she knows that reality as well as we do due to my T1D diagnosis at age 9. The truth is that you should never under-estimate the impact of a sick child on a marriage: the focus naturally shifts from each other to that child and home life inevitably revolves around what they need in every waking moment. In our household, those needs have not just been during the day, but at nighttime too as M’s sleep issues have been an ongoing problem that we continue to struggle with and every time we seem to be making some headway with it, something happens to set us back to where we were before. His broken leg has been no exception and has added to that regression as it has seen us playing musical beds with G moving to M’s cabin bed and Mike to G’s room to give M the comfort he needed to enable him to sleep in the weeks following the accident. The physical strain of looking after M with his broken leg has taken its toll on me, leaving me exhausted and Mike and I have had little time to spend with each other without interruption.

IMG_0512[1]

Our plane is the one on the left, which looked tiny when seen next to the Easyjet one also waiting for passengers

Last Monday passed in something of a blur and proved to be a long day of travelling with more than its fair share of minor hiccups along the way, just to keep us on our toes. We were up at 3.30am to reach our regional airport before a 6.30am flight to Munich, followed by a couple of hours waiting at the airport before our shuttle bus arrived. Then there was the 30 minutes of pure stress as we failed to connect with the shuttle bus due to the unclear instructions as to where to wait that were written on the booking form and my tears of panic as Mike desperately tried to find a helpful German airport worker to help him communicate with the bus company, before all was finally resolved and the driver turned around to pick us up. IMG_0522[1]The following 4.5 hours in a minibus without functioning air-conditioning and unable to communicate with said driver due to my lack of German and his lack of English was interesting, though we drove through some amazing countryside and realised that 4 countries in 1 day (UK, Germany, Austria and Italy) was a record even for us. We finally reached Lana, our Italian destination, only to discover that the cable car to the hotel – the only way to reach it – had broken down and we were destined to wait for an indeterminate amount of time as the statement that “..it might be 5 minutes, it could be 30…” was accompanied by an unconcerned shrug. But, we got there in the end and, having reached what is an amazing resort, it was, without a doubt, all worth it in the end.

NEAW 2016 – I am an EGID Mum

Tonight I’m exhausted. Not just physically tired out, but feeling that kind of “deep-down-to-my-bones” emotional exhaustion that comes when you’ve finally and inevitably reached breaking point. That tiredness that makes every decision nearly impossible to make, from what to cook for dinner to whether to give in and go to bed and sink into sleep before the children do. That physical exhaustion that is felt in every part of my body as an unavoidable ache that is only relieved for minutes seconds at a time and returns full-force all too soon. In the last 10 years there have been many times, almost too many to remember, when I’ve felt tired out and fed up, but tonight is the first time in a long time that it doesn’t matter what I watch, or listen to, or read, or do because whatever it is, I find myself here with tears pooling in my eyes. Earlier I sobbed, uncontrollably, without regret and in isolation, not wanting the children to stumble upon the waves of deep grief I could sense rolling off me as I curled up and let those tears flow. I’ve been pushed to this point by the shock of M’s broken leg and the overwhelming sadness of an opportunity lost, but I know in my heart that really I’m grieving the loss of yet another “normal” part of my child’s life.

When we got M’s diagnosis 3 years ago, it was a relief. After years of angst and an unwavering conviction that there was something wrong, something more than the doctors were telling us, to finally have a name to put to the root cause of his problem meant that we hadn’t made it up, weren’t imagining the health struggles he had and could hope that we would start to get some answers to the questions that were battering our every waking moment. It didn’t take long for reality to kick in and we soon realised that the diagnosis of Eosinophlic Colitis (EC) would leave us dangling and asking more questions, rather than being the solution to our problem. Mike struggled with the not-knowing and needed to find out more, to fix the situation, whilst I took the hand we’d been dealt and determined to do the best we could in difficult circumstances. I’ve tried to face up to every new challenge with a positive attitude and to encourage the family to keep plodding on, even when it feels impossible to do so.

llifelived

This latest incident has shown me that even though we’ve weathered the harshest of storms and come out smiling, perhaps I haven’t allowed myself to grieve as really I’ve needed to do. I’ve not had to face the loss of my child, but I have had to survive the loss of the healthy child I thought he would be. The truth is that M will never have a life free from EGID. He will never experience a life free from pain. Neither he or G will ever regain the childhood innocence that has been taken away by chronic ill-health. He will never be medicine free and the chances are he will always have a restricted diet.

But that’s okay.

AND it’s okay for me to grieve those things.

Acknowledging those truths will help us accept them, will allow us to move on from them and will give us hope for the future; because from all those negatives have come some amazing positives, experiences and opportunities that would never have crossed our paths and a truly inspiring group of parents, now friends, who understand because of their own pain. What’s more, I’ve realised that whilst it is natural to be sad that some of my hopes and dreams for my children won’t come to fruition, it’s much more exciting to see where their lives and life experiences will take them.

Would I change the presence of EGID in our lives if I could? Of course I would. I’m a Mum and I want the best possible for my children. Life with a chronic illness is a heavy load to carry and I would do and give anything and everything to lighten that load for M and G; but I can’t. I can’t wish it away, but I can equip my children with the tools to accept and survive and do even more than just survive, but to live life to its fullest, taking every scrap of fun and joy from it that they can. My children are survivors, they are warriors and they will always be encouraged to achieve everything that they can. And along the way, we will continue to be open about EGID, about its impact on our lives and the reality of living with it day-to-day. We will raise awareness as best we can, educate the people around us and support those who find themselves facing the same battles we do because of this illness.

I am the mother of a medically complex warrior. I am an EGID Mum.

 12592666_841987539243702_6081498560895696795_n

 

 

Reaching out

I am, without a doubt, a firm believer that things happen for a reason and that the lessons I’ve learned, the situations we’ve survived and the successes we’ve fought for and achieved over the last few years have given me an understanding and empathy that nothing else could have done in the same way. I have discovered within myself a strength I didn’t know was lurking, which has seen me through some of the darkest days I’ve ever had to face. My Mum and Aunt love to remind me I come from a line of strong women and these challenges have helped me grow even stronger. The struggles I’ve had to face have enabled me to reach out and bring some comfort and reassurance and offer an ear always ready to listen when others have most needed it. What’s more, not only can I speak from a shared experience and the common bond of parenting a child with a chronic illness, but I want to give support when it’s most needed. you-never-know-how-strong-you-are-until-being-strong-is-the-only-choice-you-haveThat incomparable insight is what almost makes the challenges of M’s health worthwhile, for whilst I would give anything for him not to have to live with a rare illness like EC, it has, without a doubt, given me a compassion and understanding beyond what I would otherwise have known.

When setting up my blog 3 years ago, part of the process was to pen something that would honestly capture who I am and the reasons behind my decision to start it to include in my “About me” page. I won’t deny that this blog has undoubtedly become an inexpensive form of therapy for me, allowing me to explore my innermost thoughts and feelings about the chronic illness that has dominated so much of the last 10 years of our lives as well as sharing our experiences of it; but that wasn’t my raison d’être. What I wanted most was to be able to reach out to others who were facing similar challenges “…if I am able to speak to the heart of even one parent who is going through the same turmoils, then I know the hard work will have been worth it…” In the months since I first wrote down that somewhat ambitious desire, I have received the occasional e-mail telling me that what I’ve written has really resonated with another parent, responses that have meant so much as they acknowledge an achievement of my goal above and beyond what I originally wanted.

Knowing that I have received those messages you could easily assume that I might consider it a job well done and just leave it there, but over the last few weeks I have received more messages of encouragement than I ever anticipated and have found myself in the position of being able to offer support and advice when I least expected it. Those opportunities have drawn on the many facets of my life experiences, from seeking a diagnosis of EC to coping with a new diagnosis of T1D and from facing the daunting reality of tube-feeding to the challenge of switching a child to a gluten-free diet. What is even more amazing is that the people I’ve been talking to have been a mix too: Mums from school, friends met through support groups and those just looking for reassurance from someone who has already walked the path they now find themselves on. I don’t claim to be an expert in any of these things, but I am an expert in my child and our experiences and can offer an insight into how we have coped and the tips I’ve picked up along the way. When we started out on our search for a diagnosis for M, and then again when we made the decision to move to tube-feeding, the information readily available was scant and it took dedicated research and hours of reading, and re-reading, medical journals and the such-like to even begin to understand what we were facing. It was thanks to on-line forums such as FABED and PINNT and their members that we began to truly comprehend the complexities of life with a chronically ill child. social-media-treeMy blog has simply been an effective way to put all of our experiences into one place, hopefully with some useful pointers for others in the same shoes and, by doing that, to create my very own, very personal resource.

What’s even better in my opinion is that my passion to reach out and help others has been adopted by both children too. G has developed an empathy and understanding that extends out from the home into the classroom and wider world, and which has been commented on in recent weeks by her teachers and the volunteers at camp. She shows an amazing amount of tolerance towards the challenging behaviours and differing views of her peers and is always prepared to listen and respect what they have to say, whilst standing her ground with her own opinions. G is also sympathetic to those who are in the same position of having a sibling with a chronic illness and can fully understand the frustrations that the sometimes difficult behaviours of those siblings can cause. Whilst sometimes reluctant to deal with M at home, she never hesitates to offer help to those around her when it’s needed.

In similar fashion, M has developed a compassion that I can only attribute to the reality of a life altered beyond recognition by EC and multiple food allergies. At a recent birthday party, one of his friends was confined to a wheelchair due to an ankle injury and M immediately stepped in to make sure this friend could be as involved as possible, despite the constraints of the wheelchair. He took the time to push his friend around the garden so he could join in the activities and toasted marshmallows on the camp-fire for him, even though he wasn’t able to eat them himself. Likewise, another good friend has just been switched to a gluten-free diet and M has made sure he sits with him during lunchtimes at school to discuss the different foods that C has been trying. The parent of this friend rocked my world nearly 3 years ago by inviting M home for tea and being willing to cook to suit his complicated needs, not just that one time, but numerous times since. It feels rather wonderful to know that my boy is now returning that favour and giving this friend the chance to vent about his new diet.

I don’t know what the next few months will bring and the opportunities to offer support may start to dwindle, but there’s one thing I know for sure, as a family we will all continue to reach out and help out whenever we can.

reach-out

Day 6: Educating those around us

With the growth of the internet and the increasing popularity of social media platforms as well as the plethora of blogs out there that cover a multitude of topics, the world has become a lot smaller and it’s easier to spread the word and work towards greater understanding. Our family has become adept at educating those around us about EGID, a necessity when even the medical community struggles to reach a consensus about this rare disease and whether it really exists or is simply part of a much bigger picture. As a quick aside, try living with anyone who is in the midst of an EGID flare and, bigger picture or not, you’ll understand why we will continue to fight for research into this unquestionably chronic and life-impacting illness. T_2384403_orighe same is true when it comes to feeding tubes as sadly misconceptions are rife and the reasons behind a tube can be as complex and individual as there are stars in the sky. Even with children or adults living with the exact same condition, their symptoms and need for additional nutrition can be vastly different.

Of course, those of us who live with the reality of additional nutritional support and tube-feeding often have the best opportunity to educate those around us about it, but we can’t do it on our own. PINNT (Patients on Intravenous & Nasogastric Nutrition Therapy) here in the UK and the Feeding Tube Awareness Foundation in the USA do an amazing job of supporting families going through nutrition therapy, be that newcomers to the world of tube-feeding or those who’ve been doing it for years. They also provide tools and advice that can be effectively used to educate the outside world about the reasons behind this treatment and how to give easy-to-understand answers to the most difficult of questions.

Last year, M made a video for National Eosinophilic Awareness Week, which he used to help teach his classmates and the wider school not just about EGID, but also about his tube and, to be perfectly honest, I couldn’t think of a better way to help educate my community than sharing it once again:

Day 5: But who supports the supporters?

Family on Blackboard-webWhen you are tube-fed, I think it’s only natural to expect the support of your nearest and dearest, especially in the case of the tube-fed child. In a recent interview about her MS diagnosis, actress Jamie-Lynn Sigler from the US TV show “The Sopranos” said that “when one person in the family has a chronic illness, the whole family has it.” and this really resonated with me. M, I hope, has never needed to question the unfailing and unconditional support that Mike and I will give him along every step of his journey, but it’s not just us who have walked that way with him over the last 12 months. Without any say in the matter, G has been dragged along for the ride too and has been a great comfort and support to M when it matters most, arguments and fallings-out aside. I have talked before about the amazing community that surrounds our family, but G has been something of an unsung hero in the story. Over the last few years we have seen her struggle to cope with the reality of having a chronically ill brother, which has manifested itself in behaviour and attitudes that are less than ideal and which need love and understanding in the most testing of times. We work hard to try to give G as much time as we can, but sometimes that can’t be as much as we’d want, especially when going through a particularly tough time with M. Sometimes siblings need more time than the parents can find, so who is it that can help parents support these young supporters?

Many people will have heard of Young Carers projects, but perhaps will not realise how massive and vital a role these groups can play in families dealing with chronic illness. Young carers are defined as “children and young people who often take on practical and/or emotional caring responsibilities that would normally be expected of an adult.” Being a young carer is an isolating experience as the child may be reluctant to discuss their home life with friends at school for fear of bullying and will often feel that they are in a unique situation. imagesYoung Carers groups try to meet on a regular basis to give the youngsters a much-needed break from the day-to-day, the opportunity to meet other young carers who will truly understand the pressures and strains they are under and the chance to have fun and be a child. Depending on the location, and sadly on the funding available, these organisations may offer evening clubs, weekends away, days out and even holidays as well as friendly advice, information and counselling to both the young carer and their family. In our area, there is also a school worker who runs lunchtime clubs at some of the local secondary schools, hold awareness assemblies and will act as an advocate for the child if needed.

Frequently these youngsters don’t identify themselves in the role of a young carer and it came as no surprise to me that G didn’t as I certainly had never really thought about her in terms of being a young carer until fairly recently. Thanks to a well-placed poster, a stray comment at school and some gentle prodding from a fab EGID friend, I contacted our local Young Carers group, filled in their referral document and sent it off with my fingers tightly crossed that something helpful would come from it. With the most amazing coincidental timing, at almost the same time that I was waiting for a reply, G had spotted a poster in the Year 7 canteen, took a photo on her phone and showed it to me, asking if I thought this was something that she could find out more about. Delighted that she was interested in this support and wanting to encourage her to investigate the opportunity under her own steam too, I agreed that she should contact the teacher named and see what further information she would be given from within school. P1000101She and a close friend in a not-too-dissimilar position have since met with this teacher a couple of times and have been given more information about our local young carers group as well as a list of useful contact names and numbers.

We also had a positive response from my referral form and last week G and I met with Hannah, one of the Young Carers team. She was with us for about an hour and talked to G about all things Young Carers. Having established that G understood what was meant by the term “young carer”, Hannah then took the time to explain how G fit into that role and then they discussed at length just how G helps M and the rest of the family and how she feels about it. I stayed in the kitchen the whole time, but switched between sitting at the table with them and carrying on with preparing feeds, meds, packed lunches and dinner in order to give G the chance to open up about her feelings. I reassured her that we wanted her to be 100% honest about the emotional impact that M’s illness has on her and was pleased to hear her being just that. Nothing she said surprised me in the slightest and I found it a relief to see her open to the idea of the Young Carers groups and all they can offer. She is keen to get started as soon as possible and is just waiting for the paperwork to be processed and the invitation to drop onto the doormat Hogwarts-style!

I am fascinated and pleased to see that there is an increasing awareness worldwide of the lasting impact of chronically ill siblings on children and the need to seek ways to effectively support them as they grow up, often in the shadow of the sick child. Last year I became aware of another fantastic project, this time by Australian photographer, Alexandrena Parker and Rare Voices Australia, entitled The Forgotten Ones, which sought to highlight this aspect of the rare disease community and unsung-hero-greport…to celebrate and recognise the unspoken and often forgotten support that siblings provide to loved ones suffering.” This is just one person’s small step to make a difference to these unfailing supporters, but with the help of projects like The Forgotten Ones and Young Carers, we can all help support our sick children and their unsung heroes.

 

*The wonderful charity, Over the Wall, also provides respite camps for sick children, their siblings and their families, either all together or separately. You can find out more here.

A pain scale for every season

My last blog post about M’s interpretation of his pain and how important it is for his medical team to understand him sparked a series of interesting conversations both on-line and in real life about just how effective pain scales can be for those who suffer from chronic pain. So many shared their own experiences of how their children express their pain and adapt to a new “normal” based on what their average day looks like and the symptoms they assume to be something that everyone has because they’ve never learned any different. What was most fascinating was the array of ideas and examples of the different pain charts out there that were sent to me and I thought I’d share some of them with you:

painG’s godmother shared this pain scale image with me and I love the wording that is attached to it as it sums up to a tee how M has described his levels of pain over the years. From the magical unicorn of no pain at all which happens occasionally, to the breaking point of inconsolable sobbing and unbearable pain that little can ease, I’ve seen M pass through every stage of this chart on all too regular a basis. I doubt the colours, images or facial expressions would appeal overly to him, but it helps to clearly explain how he copes to those who need to know.

charlie_brown_pain_scale-170452A fellow FABED Mum sent me this one saying, “It’s the only one that’s ever worked – I think it’s because apart from the last face, they aren’t very emotional, so she is prepared to admit to them. There is a Lego one, but the emotions depicted on the faces is *extreme* – I think it’s more for a paediatric A&E type thing. So a kid with a normal pain/health experience would probably find it helpful, but the level of distress the pain correlates to isn’t much help for someone who has made this into their normal…I do think these pictorial pain scales are good – pointing is so much easier than talking, to start the process. R finds the words ‘annoying/uncomfortable/miserable/horrible’ very helpful and she even sometimes uses them without prompting.” The recent release of the latest “Peanuts” film will no doubt lend added appeal to this Charlie Brown themed scale.

legoThis third one I discovered through Twitter and was posted up by @2tubies, whose 6-year old son helped make his own pain chart for the school environment with the help of the school SENCo and his Mum. They used Lego figurines to depict how he might be feeling and offered some easy solutions for his symptoms. This solution-based approach is one that I find works well with M and have started using it more and more over the years. I rarely give M the option of staying home from school when he’s feeling unwell, but will instead list out those solutions I think might ease not only his pain, but also the whirlwind of emotions that is so frequently tied into what he’s feeling on a physical level. Whilst he was still being tube-fed, I would always start with the offer to slow down or even stop his pump for a limited amount of time and then followed that up with pain relief or a hot water bottle. My final question has always been what M thinks will help him the most and given he has a clear idea of what I’m suggesting, then we have always been able to find a solution that works for us both. Whilst giving these choices verbally works well at home, I imagine that presenting them in a pictorial fashion would make great sense in the school setting.

Of course, the ideas behind these pain scales can easily be extended to cover other physical and emotional needs that our children may have when outside of the home. When G was younger and dealing with her own health challenges, one of her fantastic teachers introduced the concept of a “magic marble”. We had discussed the use of a password, a word that was random enough to not be misinterpreted as a genuine contribution to a conversation and which would indicate that G needed help, but she was at an age when she was reluctant to vocalise her needs and the use of “rhinoceros” actually stuck out like a sore thumb most of the time. Instead, G kept her marble somewhere safe and easily accessible at all times, be that her pocket, bag, drawer or table, and just needed to give it to her teacher or place it on the teacher’s desk to indicate she needed some support. No other child was aware of the significance behind this marble and consequently didn’t bat an eyelid if they spotted her handing it over, assuming that she’d probably just picked it up and was handing it in. It was an easy way for G to communicate her needs about a sensitive subject and gave her a sense of ownership over a situation that was otherwise lacking her control.

Signal LightAt G’s secondary school, they have included traffic light coloured pages in the back of the pupils’ planners and the children are encouraged to use them by putting the relevant colour facing up on the desk if they need some help during a lesson, but are too worried or nervous to ask. For some children, a “traffic lights” approach using counters or cards can also be effectively used to indicate how they are feeling in any given situation, where red can indicate their sense of losing control or not coping with the environment surrounding them. The opportunity to be tactile with the counters may also help children with sensory issues order their thoughts and be more able to express them when asked. Even if the child is not able to share what’s troubling them, a clear plan of how the teacher or adult in charge should respond to each colour will change that child’s perceptions and experiences away from home. Similarly, M’s school uses a “Fist to 5” approach to their work, where fist indicates a lack of understanding and the need for some help, and 5 means they are confident and happy to carry on on their own.

Whatever the system used, these scales encourage a child to communicate with the outside world about how they are feeling and coping, even when they don’t have the words to express it.

But that wasn’t part of the plan

Without doubt, December whirled past in something of a blur. As I’ve already posted, we had been waiting for an admission to GOSH since last July and naturally it came when we were least expecting it. This admission had been planned by M’s dedicated dietician, who was hugely concerned by the continuing lack of progress we were making when it came to successfully reintroducing food back into his diet and she was keen to challenge him within the hospital setting so that they could see exactly what we were experiencing at home. Our initial discussions all those months ago were in terms of weeks: a lengthy admission, perhaps up to 6 weeks, to fully understand how M’s bowel and bplanody respond when food is eaten; a daunting prospect when you have another child to love and nurture at home as well as a job to hold down.

Move forward 3 months and we reached our October outpatients appointment with no admission in sight and, due to the lack of long-term gastro beds at GOSH, no clear indication of when that elusive bed might eventually become available. Cue the recommendation of a radical rethink and a change of plan to a one week admission, followed by a series of further 1-week stays, scattered here and there throughout the year as and when there was a bed. The gastro team, keen to get him in before Christmas, felt this was our best chance of getting a bed any time soon and so we rolled with the punches and agreed to this amended plan, still not quite clear as to when the admission would actually happen. Over the following weeks, I spent valuable time fine-tuning the details with M’s dietician, agreeing what foods we would choose for challenges during our stay and discussing what the medical team were hoping to achieve through this process. The hardest part remained the lack of a long-term plan. The truth is that M’s continued problems with so many of the foods we’ve tried to introduce is baffling his doctors and until this admission was under our belt, they just didn’t know in which direction we’d be heading next.

By the time M was admitted on December 3rd, the plan had been tweaked again and unsurprisingly would continue to be so during the length of our stay. That one week admission suddenly became a 2-week stay and the 2 foods we had agreed to trial: potato and sweet potato, suddenly became 4: potato, egg, banana and salmon. I had already expressed some concerns about the plan to challenge him with 2 foods in a week and the increase to 4 over a 10-day period was now ringing some serious alarm bells in my head. Mike and I knew full well that the chances were that I would be bringing home a less-than-stable M just in time for Christmas and were resigned to rolling our sleeves up and spending the holidaysSmall-Changes working hard to bring him back to a healthy position ready for the new school term. We weren’t happy about this situation, but felt there was really no alternative; we had to give their plan a try in order to find some answers.

Despite those misgivings, the ones I had fully voiced to everyone and anyone who would listen from the minute I first met with M’s consultant and dietician when we arrived at GOSH and that I continued to express through every step of the following 10 harrowing days, we set off on this plan with the hope that we would find another safe food for him and perhaps even start to understand what has been troubling his gut for so many years.

What wasn’t part of the plan was the continued reluctance of the medical teams in hospital to listen when I told them M was beginning to show signs that all was not well with the food challenges and that he was reacting to the foods;

the plan didn’t anticipate the reality of M’s bowel being so unable to cope that it refused to work properly by the time we were 10 days into the 2-week admission;

and it definitely didn’t include 10 litres of Klean-prep (the worst bowel prep known to man) being continuously pumped into his tiny body over a 6-day period in an attempt to clear the resulting chronic impaction.

Nowhere in the master plan had I seen fair warning that, by day 14, I would be rendered utterly helpless and only able to sit, holding his hand and massaging his aching limbs, as M was left bent double from the cramps that were consistently hitting an 11 on the pain scale, where 10 was classed as the worst pain imaginable.

dancing-in-rain

Somehow we limped through endless hours of pain and frustration and dashed hopes, and we survived. Somehow we talked and ranted and sobbed and challenged until finally the medics acknowledged that things had gone horribly wrong, and we survived. Somehow we managed to stand strong and stay strong and stand our ground and refused to compromise on what we knew was in M’s best interest, and we survived. Somehow we rode out the fiercest storms and learned to dance in the rain, and we survived. Somehow we found enough humour in each day to keep the smiles on our faces and to laugh the smallest of giggles, and we survived. Somehow we got through the unexpected and started to find our way back to our normality, and we survived.

But that wasn’t part of the plan.

More than a smile

It all started with a simple compliment that was probably given without too much thought, almost a throw-away comment, but the words, planned or not, had a profound effect months ago and still do. I had walked M and G to school after a particularly difficult night with M,  following on from a couple of really tough days and I was tired and emotional as I left the school grounds. Passing their Head at the gates, I gave a small smile, a nod of my head and a quick reply to his question about how M was feeling. His next words stopped me in my tracks and even now continue to resonate in my memory, especially when things are feeling a little more challenging or tiring than normal:

“I just wanted to say that I admire your constant smile and upbeat attitude about everything. Your positivity is reflected in the way both children deal with whatever’s thrown at them in the classroom and in life.”

My garbled response was a variation of my stock answer:

“What else can I do, but smile? If I didn’t I might end up crying, but that won’t help M or G or me; and it won’t change the way things are…” (I shrugged) “…besides, if I don’t smile and get on with things, who else will? That’s my job as Mum.”

That might be true. but I know a lot of people who wouldn’t be able to smile about it. They’d feel hard done by and resentful of the hand they’ve been dealt, their response would be focussed on complaining – that simply isn’t you or the children.”

I don’t know if the exhaustion of a failed food trial and a bad night’s sleep had made me more sensitive to the world around me, but his words had an impact that I felt resonating deep in my soul and gave a lightness to my step that certainly hadn’t been there 10 minutes earlier. All the way home, with unexpected tears in my eyes, 11987081_10153905230214523_3086822525667980358_nI pondered what he had said to me. After all, am I really that unusual in my response? I don’t feel particularly unique in my attitude and, believe me, I can certainly have a moan with the best of them. I suddenly had reason to reflect on how I present our situation to the outside world and why I smile, even at the most difficult of times.

I smile because, despite everything – the difficult pregnancy, the premature birth, the EGID diagnosis and the decision to tube-feed – I have a lot to celebrate. I have 2 amazing, beautiful, cheeky, intelligent children, my children with super powers, who astound me regularly with their unexpected insights into the world and make me smile. Whilst I might not be able to say truthfully that they are both “happy and healthy”, the wish of every new parent as they await the arrival of their latest addition, they are growing into young people I am proud to say are mine and fascinating individuals in their own right. They might have their struggles to manage, but they are here with me and every day with them is one more opportunity to cuddle, to kiss and to share their lives. As a family we have a lot of fun and there’s always a reason to have a giggle, laugh out loud and just smile together, even at the darkest moments.

Of course the truth is that, in many ways, my smile is also much, much more than a reflection of the joy I feel when spending time with my nearest and dearest. It is also my most effective disguise. If you look hard enough, there will be times when you might notice that the smile doesn’t quite reach my eyes or that my smile is perhaps a little bittersweet. Those are the days when it’s been hard to fight the urge to crawl back under the covers and pull the duvet over my head. The days when getting up, getting dressed and just being is a massive success.12049331_865332913546071_5149015929277272601_n The days when it’s been hard work to put one foot in front of the other and not just get started, but keep going too.

And I’m not alone. Out there in the real world are a huge number of parents who are facing the same struggles, fighting similar battles and often surviving a reality that is far harder than the one we face each day. I have been privileged to meet and get to know some of these superhero parents through our shared experiences and I see that same positive and undeniably brave approach to life reflected in each and every one of them. They are often the parents who just a tiny bit more weary at the school gates, a little more contemplative at the end of each day and a lot more determined to make the most of every moment they have because they know just how precious those minutes are. They will be the ones who will shrug off your questions about their well-being and turn the focus firmly back to you and yours. Not because they don’t want to answer, but because they know that if their emotional floodgates are opened, it will cause a tidal wave that will engulf them and make keeping their heads above water just a smidgen harder to do. And they will be the parents that tell you they don’t consider themselves particularly special or outstanding or unique because this is their life, they know they can’t change it or their children and nor would they want to. M might end up being the cause of many more grey hairs than I’m ever going to admit to, but I wouldn’t have him any other way; he wouldn’t be him any other way; and those parents’ love for their children transcends the unexpected difficulties they’ve been presented with.

I want to finish with a beautiful thought that a friend shared on FB when we were reflecting on this thought-provoking blog post and our own life experiences as special needs parents:

“That’s the thing…we weren’t given these special children because we are special, they make us that way with how amazing they are.”

superhero