Tag Archives: Lego

Scottish Engineering

Looking back now, 2 months on since our Scottish adventures, I can’t believe just how much we did in what really was so short a time. Having “done” Glasgow, our next major destination was through the beautiful, snow-tipped Cairngorms to Inverness, but not before we had stopped off to experience 2 unmissable sights – the Falkirk Wheel and the Kelpies. When we first started planning our trip to Scotland, so many family members and friends told us that we absolutely had to visit the Falkirk Wheel and warned us to pre-book our tickets to make sure that we didn’t miss out that we both took heed and booked our Easter Sunday day out.

The engineering wizardry of the wheel, which was the world’s first rotating boat lift when it was opened in 2002 to link the Forth & Clyde and Union canals, had M absolutely hooked from the moment we showed him the website and he couldn’t wait to actually experience it in person. The transition from the lower canal to the higher one (and back again) is unbelievably smooth and you hardly realise you are moving 35 metres into the air on a remarkable man-made structure, planned in Lego and powered by the energy required to boil just 8 kettles for tea. Without a doubt, it is an impressive sight to observe and having done our “turn” on it, we settled in at the cafe for a light allergy-friendly lunch accompanied by a side order of a great view of the wheel doing its thing as we ate. 

The tour guide on our boat gave us so many facts and figures about the Wheel that it seemed almost impossible for the children to absorb many of them and yet, even now, they still remember the ones that particularly fascinated them whilst we were there. As we looked out from the top canal towards the Firth of Forth, we heard about the Kelpies just a short drive away and knew without a shadow of a doubt that we absolutely couldn’t head further north until we had taken our horse-mad girlie to see these amazing structures.

Built in a phenomenally short space of time in 2013 to form a gateway to the eastern entrance to the Forth & Clyde canal, this monument encapsulates the mythical beauty of the water spirits of Scottish folklore whilst forming a fitting tribute to the horse-powered heritage of Scottish industry. These 30-metres high horse heads are simply breathtaking to see and although we didn’t have time to enjoy the Easter sunshine with a walk through the Helix parkland project, we all relished the opportunity to stretch our legs and even perfect some dance steps on the way to the structures. All in all, it was a perfect way to spend a peaceful Easter Sunday with family and one that perfectly combined so many varied aspects of the Scotland we were slowly discovering each day.

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Day 2: An even more energetic M!

 

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This is one of my favourite images from 2015: our own version of last year’s Feeding Tube Awareness week meme that I adapted using photos of M. Those photos were taken over an 18-months period and by picture 4 you can clearly see the improved colour and fuller cheeks of M’s face now that he was finally getting proper nutrition. After nearly 6 months being fed via his NG-tube, he had gained weight, had improved bowel function and was once again the cheerful, happy-go-lucky child that we had known him to be as a somewhat mischievous toddler.

Over the last 5 years, M’s seemingly unrelenting energy has confounded those surrounding him because M has never given up; has never let his EGID slow him down, even in the darkest moments. He has long since learned the lesson of “grin and bear it” because, quite frankly, the alternatives for him were unthinkable. M is a do-er. yourimageHe loves to run around and be on the go and into everything all of the time. I mean it. M just doesn’t stop, ever. He’s always given 110% to whatever activity he’s doing, even if it meant trying to finish a swimming lesson white as a ghost and with a temperature of 39.5°, or running the magic mile on the first day back at school after a week off vomiting and barely able to move from his bed or the sofa. Whilst you might often find G curled up in a chair or on her bed reading a favourite book, the only time you’re likely to find M doing the same is at 11pm when he’s waiting for me to come to bed before settling down himself, and even then you’re just as likely to find him playing his cello, or perfecting his dance routine, or building with his Lego.

We even managed a trek across Tower Bridge on our travels

We thought we had seen it all, but 2015 showed us just how endless his energy supply could be when he was being fed a balanced, nutritious feed that provided all the calories, vitamins and nutrients his growing body needed. No longer struggling with the anxiety of limited bowel function or working through the relentless chronic pain, M found the energy to achieve so much with his pump pack and feeding tube in place. He walked miles around London on our Shaun the Sheep hunt with no complaint of aching legs; he tackled and beat the challenge of learning to ride his bike unaided; and he continued to participate in the weekly sessions of Stagecoach that he’s loved for years, no longer needing to take regular breaks during the 3 hours training. We’re now 6-weeks into life without a tube once again and none of us knows what the future will bring. His year with the tube might be all that M needs, or we might see the return of it at an as yet undetermined point, but I don’t regret that year, not when I can see the improvements to M’s health and life and energy levels that it brought. His tube was never a barrier to his activity, but rather the boost he needed.

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.

Legoland Florida

As well as our successful days at DIsney and our disappointing foray to Universal, Mike and I treated the children to a day out at Legoland Florida20140809_232045We are big fans of the Legoland Windsor resort and had a marvellous visit there last summer with our friends from the wonderful charity, FABED, so were excited to make a visit to the bigger and better (well it’s American so it had to be, right?) Floridian version.  This theme park is situated on the site of the old Cypress Gardens and has kept a relatively small portion of the original park at the centre of the new one.  It’s around a 45-minute drive from Disney and was easy enough to find once we were headed in the right direction.  The park was surprisingly empty upon our arrival and we headed straight to Guest Relations to see if we could get a disability access pass (or their equivalent) for M.  The pass was issued without question and Mike then asked about what allergy information they had available and how we could manage this during our visit. The very helpful guest relations staff member knew there was a hard copy somewhere of this information, but sadly couldn’t put her hands on whilst we were in the office.  No matter, she reassured us, it was all available online.  Great, I thought, I could hop onto their website using my tablet and work out where we could safely eat.  Ah no, Legoland Florida has no wi-fi available in the park, so it was actually impossible to see any of the information we had been advised to access.

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Need a car? What better than a Lego Ford!

Being seasoned travellers with M and G, of course, we had our trusty rucksack full of safe foods and reasoned that we could and would think on our feet when it came to lunchtime. My notes from our day trip record that it was “good, but not the well-oiled machine that WDW is”.  The queues were painfully slow and the service not massively efficient.  Their staff members appeared, for the most part, to not be terribly enthusiastic in their roles and I felt it would benefit from finding more customer service orientated staff.  Mike had to wait for nearly 30 minutes just to get to the front of the queue to ask whether they could accommodate food allergies at that particular food concession unit.  There was a copy of an allergy menu there, but we were disappointed to discover after ordering that the allergy-friendly “plain” burger was served with cheese!

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We each picked our ride of choice from the map and started heading our way around the extensive grounds to make sure we made the most of our one day there.  Many of the rides were similar to those found in Windsor and the children had a great time revisiting some of their old favourites as well as trying out a few of the “new” ones.  20140809_222642We enjoyed the US version of Miniland although I was disappointed at how shabby many of the models appeared, especially as you could easily identify where elements were missing due to the telltale marks  and empty spaces on the surfaces.  Nevertheless, it was fun to see the likes of Las Vegas, Hollywood, the White House, San Francisco and New York depicted in lego.

 

20140809_210205Unfortunately the weather was somewhat inclement and so many of the rides closed for around an hour or so during the afternoon.  We took advantage of the opportunity and explored the original grounds of Cypress Gardens and stood in awe of the amazing Banyan tree that can be found there.  We were hoping to see the Pirates water show as M and G love the “Pirates of Skeleton Bay” in Windsor, but the threat of thunderstorms and lightening meant that the final performance was cancelled.  Despite all of this, we enjoyed our time there and had plenty to keep us all busy for the day.  I would say that Legoland Florida is worth a visit if you, or your children, are lego fans, but in my opinion, Legoland Windsor beats it hands down.

Marks out of 10:  6 – a good attempt, but the queuing system, park maintenance and food available let it down.

 

Fabulous FABED!

FABED

We have once again enjoyed a busy weekend.  Thanks to the wonderful organisational skills of the dedicated group of parents who set up FABED back in 2005 to support parents and families of children with EGID, we enjoyed an amazing weekend at Legoland Windsor.

Legoland

What made this weekend so special was that it was organised with our EGID children in mind.  A full day to meet other families who are carrying the same load as us and who know how it feels to be fighting a never-ending daily battle that most of our friends just can’t comprehend.  An opportunity for M to meet children who are just like him, suffer from the same condition and have to live with multiple food-allergies to a greater or lesser extent.  A chance for G to meet others whose siblings are constantly in hospital, or making hospital visits and who are often the focus of so much attention.

We met bright and early on Saturday morning and were delighted to see that there were in the region of 40 families there, all of whom had at least 1 child with EGID, though we got to know one family where all 4 children were affected to some degree.  This was our first FABED event, but were instantly made to feel welcome and amongst friends.  We recognised some familiar faces from the Allergy Show a couple of weeks ago and both M and G instantly made some new friends.

hotel

Unfortunately M suffered a bad day, but we had the advantage of being able to seek refuge in the suite at the amazing Legoland Hotel.  There was a dedicated medical room to provide privacy for those who needed it for feeding or medical purposes.  The Suite itself had tea and coffee-making facilities for the parents and a play area filled with Lego for the children to enjoy.  We took an hour and a half out of the day to give M some much needed downtime and the children enjoyed attempting to build the biggest tower possible with some of their new friends.

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The evening showed just how much hard work and thought had gone into making this an unparalleled get-together.  A buffet dinner was provided for the FABED families, with full details of all ingredients used to prepare the dishes and options available to cater for even the most difficult of diets.  Those children unable to eat were able to spend time in the play area, which was next door but out of sight of the food.  M was delighted to be able to choose from such a wide selection of foods and we were reassured that we knew what each dish contained and what he could and couldn’t eat.

As soon as we heard about this day out, we knew we’d be going along.  It would have taken something extreme to keep us away.  M feels so alone in his allergy world that the opportunity to show that he really isn’t on his own and to allow him to chat and get to know other EGID sufferers was one that we couldn’t turn down.  He made particular friends with young R, who is a year older, but feels the same emotions and frustrations as M.  They were able to have an honest chat and M values this new friend who is “just like me Mummy, but he can eat even less, sometimes has to be tube fed and has accidents too.” R’s big sister, F, was a great source of comfort to G also as they share the same experiences of a younger brother with EGID as well as struggling with their own food allergies.

I also got to meet the delightful mumannie123, who writes the blog, Food for Thought: Boweled over by food allergies, recipes and advice.  We have got to know each other a little over the last couple of weeks through our respective blogs, so it was wonderful to finally put a face to the name and spend some real time chatting.  We have discovered that we live in the same part of the world, so I’m looking forward to perhaps being able to meet in person as time allows, as there is nothing quite like having a friend who understands what you’re going through from firsthand experience.

We made the decision to make a weekend of it and stayed the night at the Hotel in an Adventurers Room.  The lego models and details in these rooms are astounding:

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This weekend has been a truly fabulous weekend and my heartfelt thanks go out to FABED and Legoland Windsor for accommodating such a complex range of needs and ensuring that so many families were able to enjoy as normal a day out as possible when dealing with illness.  To this family, at very least, it has made a huge difference and has given us a great resource for support for this journey that we now know we are not travelling on our own.