Tag Archives: disability

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.

 

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The right PLACE for an opinion

Finally, it’s happened. Finally, I’ve found a place where my opinion matters. In fact it did more than matter, it was requested, recorded and appreciated too and, what’s more, it wasn’t just my opinion that counted that day, but M’s as well and that meant the world to him, and to me.

5729994426_7fbcf8798aAt the start of 2016, not long after we had returned home from M’s December admission, I spotted an opportunity for M and me to volunteer our time to be assessors for the annual PLACE assessment at GOSH. If you’ve never heard of PLACE before, then you’re not on your own as it was also a completely new thing to me, but I loved the idea of being able to give something back to the hospital that has become the focus of the last 5 years of our life in any way we could. To my delight, M and I were both accepted as volunteers and it was then a case of waiting for the crucial email inviting us to the assessment day to arrive. When that email did eventually appear in my inbox, the day was set for early April, which coincided perfectly with school holidays and my day off work – a real win-win situation for us. M and I chatted about what the day would involve and even the unexpected turn of events that resulted in M’s broken leg didn’t stop us as Tammy, the helpful Facilities Manager and PLACE co-ordinator, reassured me that we could still take part, broken limb and all.

PLACE stands for “Patient Led Assessments of the Care Environment” and, to be honest, does exactly what it says on the tin – invites patients and others closely connected to GOSH to assess different areas of the hospital according to a specific list of criteria. Upon arrival we were well-briefed on what was required, including the 5 key areas we would be focusing on: cleanliness; condition, appearance and maintenance; privacy, dignity and well-being; food; and, ironically, a new area for 2016 and one that M was best suited for, disability. We were split into a number of teams with between 3 and 4 patient assessors and a staff facilitator in each, and each team was allocated 2 wards and either a public (or communal area), an external area or an outpatients department to inspect. M and I had discussed the ward options at length ahead of time and despite M’s initial yearning to visit Rainforest, we agreed that our opinions of Rainforest and Kingfisher wards, both of which we have stayed on in the past, would be coloured by our previous experiences and wouldn’t be as unbiased as the PLACE assessment required. I asked if we could perhaps visit one of the newer wards in the hospital as it would be vastly different from our usual haunts and was delighted when that request was met.

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Our facilitator was the lovely Mark, who had already promised M that he would try to lead our group and would take him in the biggest lift in the hospital – which we did and saw so much more of the hospital that I’ve ever seen before. Everything settled, we headed into the main Reception, our public area, and started looking at the different things and criteria we needed to consider to complete our assessment, from fire extinguishers to hand-gel dispensers and everything conceivable in-between. Once we had finished there, we headed onto our first ward in one of the newer wings of GOSH, where, having completed our assessment of the ward itself, we observed the lunch service before tasting the food for ourselves. Our final stop was back in the oldest part of the hospital, where Rainforest ward can also be found, and what must be one of the smallest wards at GOSH. The contrast between the 2 wards was hugely noticeable and it was fascinating to learn more about the proposed improvements to the hospital over the next 5 years or so. It didn’t seem like a particularly long or overly active day, but by the time we had finished with everything we needed to do and had headed back to the Lagoon to collate our scores and add any further comments, M was completely exhausted. His enthusiastic participation in giving his own opinions and insights into what he could see so soon after breaking his leg tired him out to the extent that he fell asleep in his wheelchair and was completely oblivious to the activity and hubbub surrounding him for the next hour or so.

We both thoroughly enjoyed our experience on the day and M was delighted to discover once he woke back up that an invitation to attend next year’s assessment had been extended to him and that G had been added to the task-force too. I can’t reveal too much about what our findings were until the results are published, but I will say that we did find a problem with the disabled toilet in the main reception area. We were surprised to discover that it wasn’t really big enough to accommodate M, his wheelchair, his extended leg and me and that we didn’t have the space to manoeuvre him from chair to toilet once we locked the cubicle door. It appears that M’s broken leg came in handy on that day, though I’ve no intention in offering a similar expertise to next year’s PLACE assessment day! Since then, M and I have found ourselves sitting in the fracture clinic at our local hospital assessing what we can see surround3-tips-to-improve-the-way-you-write-Web-Contenting us, just as if we were in the midst of another inspection. What’s more, as often comes of these things, some more opportunities for both children to be involved in an ongoing capacity with developments at GOSH came out of that day which is really exciting, but that, as they say, is another story.

Afternoon tea at the Celtic Manor

ladies-and-redwineAt the end of last year, not long after M had been discharged from GOSH, my Aunt celebrated a milestone birthday and my Mum started talking about a trip to the Celtic Manor in Newport for a celebratory afternoon tea. Fast forward 9 months that have taken us even closer to her next birthday than the one we were actually celebrating and with Mike organised at home to do the school-run and sort the children for the day, the three of us finally managed to become “ladies who lunch” as planned. We booked a table for their Autumn Afternoon Tea at 2pm and arrived a little earlier* (*for little, read 1 hour) than necessary due to my Mum’s anxiety of being caught up in the Rugby World Cup traffic and the pressing need to arrive early, no matter where we’re going.

We spent the first 20 minutes wandering the grounds and browsing in the shops before kicking our celebrations off with a glass of prosecco and a chat until it was eventually time to venture a little further to the Olive Tree Garden Room. As a family we are now well-versed in the world of disability and additional needs due to not just EGID and multiple food allergies, but also the presence of T1D, Parkinson’s Disease and Multiple Sclerosis amongst our members. Everywhere we go is assessed on their ability to cater for all these needs and I’m sorry to say that here the Celtic Manor failed at the very first hurdle. The Olive Tree Garden Room is a 20150918_142930stunning place to relax and enjoy the treat of an afternoon tea, but from every approach it is only accessible by steps and whilst a portable ramp is available, the staff were slow to offer help when it was so obviously needed.

These things aside, we made it to our table in one piece and couldn’t wait to get started on the tempting and extensive menu that formed our afternoon tea. The meal began with a glass of warm Winter Pimm’s – delicious – and the Harvest hamper filled with 4 bite-size savoury treats that tantalised our taste-buds and gave us an inkling to what to expect for the rest of the meal. The detailed menu impressively showed the allergens present in each of the different items on offer and I was pleased to see that gluten-free alternatives were available. On this occasion, we didn’t test their allergy offerings, a real treat for me, but I’d be keen to return to see whether they could cater for G with her gluten- and dairy-free needs and if they favourably compare to the “normal” dishes. 20150918_142925The sandwiches that followed were equally good and sized perfectly so that we could manage the cakes that came next.

The cakes were a sight to behold and it was really difficult to decide exactly where to start before trying each and every one. It was at this point that we all were finally beaten – well 5 cakes and pastries, however mini, is an awful lot for one person – but the Celtic Manor is obviously well-used to this experience and were able to offer us cake boxes to transport those extra ones home to enjoy at a later time. I cheerfully packed my remaining 2 away and eagerly looked forward to the final part of our tea, the scone. After all the other mouthwatering courses, I couldn’t wait to taste the scone with jam and clotted cream, which has to be the best bit of any cream tea in my opinion and I was confident that this one could be nothing short of exceptional.

Sadly I was very wrong and we were massively disappointed with the freshly baked Cherry Bakewell scones that arrived. The scones appeared to be so freshly baked that they were, in fact, under-done and tasted stodgy and sticky in the mouth. The Cherry Bakewell embellishment was a complete step too far and did nothing to add to the taste experience as it consisted purely of a sticky cherry syrup thinly spread across the top and a few flaked almonds added for effect. I struggled to eat it and gave up half-way through as it really wasn’t edible. To make matters worse, our disappointment with the scones was compounded by the poor quality of the tea served with the meal. I’m not sure who had trained whoever made the tea, but my Mum’s Earl Grey was the colour of a strong builder’s tea when poured and even our request for a second pot and then a pot of boiling water, did little to improve the flavour. In comparison, the coffee I had was fantastic and my Aunt much preferred the coffee to her original and fairly unpalatable English Breakfast tea.

I would love to be able to say that my review ends there, but I just can’t. Scones and tea aside, even though they’re fairly integral parts of any afternoon tea, the rest of the food was delightful and we really enjoyed everything else we had to eat; but – don’t pretend you didn’t sense there was a “but” coming – the service we received just didn’t match our expectations of the Celtic Manor. The staff members were not overly attentive and I found myself almost constantly having to grab someone’s attention each time we needed anything, however small. betterThey forgot to take our orders for tea and coffee and excused this surprising fail by blaming it on the “..very busy room..”, even though it was never more than 1/3 to 1/2 full during our visit. I flagged down our requested additional pot of hot water when it was delivered to the next door table, helped myself to extra knives from an empty table behind us when our clean cutlery ran out and even ended up asking the staff to clear our table of empty glasses and dishes to allow space for the cake stands, teapots and cups and saucers still to come.

The last straw really came when I asked for a clean cup for my Mum after her second pot of Earl Grey was delivered to the table and the waitress reached over and removed her cup. Just. her. cup. Not the saucer, not the spoon and certainly not all 3 items together, but the cup on its own and swapped it for a clean one, still swinging the old cup with its remnants of tea sloshing around it from her other hand!

20150918_145226Let me be clear: in no way did this spoil our enjoyment of the afternoon at all and in fact it gave the three of us a fit of the giggles, much to the bemusement of our unsuspecting waitress. We loved our table, even though it was tucked away in a far corner, as it gave us an uninterrupted view of the rest of the room and we all enjoy participating in a spot of people-watching whenever we can. However, given the Celtic Manor is described as a “luxury resort” and has 5-star status, the service was not what we had been expecting or hoping for our birthday celebrations. Would I recommend a visit? Yes, I think, but be warned about their scones and hopefully their service might have improved by the time you get there.

Merlin’s Magic Wand

Most of you will know the company Merlin Entertainments, who own and run attractions around the UK such as Alton Towers, the London Eye, Warwick Castle and Madame Tussauds, to name but a few; but how many are aware of their linked charity, Merlin’s Magic Wand? It’s certainly not an organisation I’d ever heard of and knew nothing about until the start of 2015. This charitable organisation was set up in 2008 by Merlin Entertainments to “…deliver magical experiences to seriously ill, disabled and disadvantaged children across the world…” and focus their work in 2 main areas:

  • Magical Days Out at Merlin attractions – over 170, 000 children and their families have been able to enjoy a memorable day out through the provision of entrance tickets and, where necessary, travel grants
  • Taking the Magic to the children – recognising that some children are unable to visit due to the nature of their illnesses or disabilities, Merlin has provided areas such as a “Fantastical Castle play area” in the CHASE Hospice, Guildford and a “Legoland play area” at the Kolding Sygehus Children’s Hospital in Billund, Denmark.

At the start of this year, not long after we’d arrived back home following M’s stay in GOSH for his NG-tube and elemental diet, I heard about Merlin’s Magic Wand and decided to investigate a little further. I wasn’t confident whether M would even be eligible for tickets or not, but thanks to their incredibly informative and easy to navigate website, 20150831_073635I decided to give it a go, working on the principle of nothing ventured, nothing gained. Both children are massive fans of Legoland Windsor and had been clamouring for a visit this year, so I selected that as our number 1 choice and, without saying a word to either of them, sent back the form and sat back to wait and see.

Within a couple of weeks of submitting my application form on-line, I had an e-mail to tell me we had been successful and that 4 entrance tickets would soon be winging their way to me. Unfortunately, a slight delay in their arrival meant we couldn’t use them for our Star Wars trip on May 4th, but the problems were soon resolved, the tickets arrived and I pinned them to our kitchen noticeboard, waiting for the right time to put them to good use. A busy summer has meant that finding that right time to go proved more challenging than we expected and we finally settled on the August bank holiday Monday as something of a “last hurrah” for our summer holidays and before G started her new venture of secondary school.

We set off early on that Monday morning, driving through the pouring rain, confident that, if nothing else, the park would not be too busy, or, at least, not as busy as it might have been if there’d been glorious sunshine. Our travels to Florida last year alerted us to the existence of ride access passes and we were delighted that the same exist at Legoland Windsor. Armed with a letter from our GP confirming the reasons we needed this pass, we headed to guest services as soon as we entered the park. 20150831_114557This is a “benefit” that has obviously been subject to some abuse over the years and Legoland Windsor has stringent checks in place to ensure that only those who genuinely need this assistance receive it.

Our day there was as fantastic as ever and we enjoyed all of our favourite rides (some of them twice!) as well as trying out the brand new Mia’s Riding Adventure, one that G was desperate to go on. This isn’t one for the faint-hearted and there was a slightly panicked moment when we discovered that M’s body-weight wasn’t quite enough to keep the seat back in a comfortable, but secure position for him ride. With some excellent help from the staff manning the ride, we managed to get M settled in a position that allowed him to breathe before the ride started and the screams from my excited duo began. 20150831_100610Mike watched from the sidelines as he and spinning rides really don’t get along and waved merrily to us, slightly misconstruing my attempts to flag a staff member down to help as an unusual display of my own excitement about the ride.

Disappointingly we are no longer able to eat on-site as we’ve found that the cross-contamination is too much for M’s sensitive digestive system to cope with and instead we enjoyed a rather soggy packed lunch, whilst watching both shows – the Pirates of Skeleton Bay and Lego Friends to the Rescue. The children were also able to be part of the audience volunteers at the start of each show, which they loved and which has become an integral part of any day we spend at Legoland Windsor. All in all, we had an amazing day out thanks to the generosity of Merlin’s Magic Wand. The charity depends on donations to help make these tickets available to those children who benefit from them and if you want to find out more about how you can help or show support, please visit their website:

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