Tag Archives: parenting

Big decisions

Courtesy of stuff.co.nz

Courtesy of stuff.co.nz

We’ve recently had to make a decision about where we’re headed with M’s health and what tests, if any, we want to push GOSH to consider.

We’ve had a mixed success with the Movicol as he has started using the toilet successfully again and we’ve been able to banish the pull-ups to the bottom of the cupboard for the next time there’s a “just in case” situation.  However, M now seems to be fluctuating between constipation and chronic diarrhoea and we’ve reduced his dose down to 3 sachets a day as the 4 were really proving to be too much for his system. We’ve tentatively settled there, even though it doesn’t yet feel 100% right.

The positive and best thing is that he’s conquered the toileting struggles.  These had been a major source of distress over the summer and it’s nice to back on an even keel.  M feels as if he’s more in control of his body – well as much as he can be whilst dealing with the ongoing battle with the symptoms of the EGID – and he’s really happy in school.  What’s more, school have been working hard at putting a medical care plan in place for him to deal with the changing nature of his EGID and his medicines, which means that we feel confident that they’re taking the situation seriously and will support him during the school day.

Courtesy of warriorfitness.org

Courtesy of warriorfitness.org

BUT – and you all knew that was coming didn’t you? – I’m still feeling unsettled about his over-all health and have a feeling that we’re not really dealing with the root cause of the problem. Despite some days when it appears he could eat for Britain, his appetite is down and his lunch-box is emptier than ever.  He’s beginning to object more to taking his daily medicines and there’s been numerous mornings recently when I’ve held my sobbing child on my lap and had to coax him to take the full implement prescribed.

His sleep patterns are off once again and I’ve lost count of how many mornings I’ve woken up to find a small limpet-like child clinging to me and stealing the duvet from my back.  Last night, I disappeared into my bed at 11.20pm, having found M still avidly reading his atlas and discovering new and interesting facts to share with me.  It has to be said that a lot of the sleep problems appear to be related to his emotional and psychological health as when Mike came upstairs just 10 minutes later, M was flat out and fast asleep in his own bed.  It’s as if he needs to be reassured that Mummy is nearby and once that’s clear, then all is well with the world and he can let himself drift off to sleep.

He’s emotional and tired and fed-up; and, to be honest, so are we.  We’re working hard at remembering and focussing on the positives, but sometimes that feels like a step too far. The constant barrage of frustrated behaviour, food management, pain relief, sleeplessness, appointments. emails and phone-calls have drained me completely and I just felt unable to face another discussion with yet another faceless registrar at GOSH, who has little or no knowledge of M and needs me to bring them up to speed before I even get to the point of the phone-call.

So, at the beginning of the week, I asked Mike to speak to GOSH and put forward our case for another set of scopes.  It’s been nearly 2 years since the last ones were done and we felt it was high time he was checked again.  We’ve got no real answers as to whether all the medicines are 1) necessary or 2) working, the limited diet is a strain and this past week we seem to have added raspberries to the list of forbidden foods.  This might seem like an easy decision to make, something of a no-brainer, but, as some of you may remember from my previous blog posts, M suffers from an allergic reaction to the anaesthetic. It’s been a big decision to make to put him through an ordeal that we hope might provide some answers, but that we know will definitely cause him pain.

rainbow

All I can say is that someone must have been smiling down on Mike on Monday.  I’d warned him that his initial phone-call would only get us put on the list and that if he was lucky he’d speak to a registrar on Tuesday or maybe Wednesday.  I fully expected that we’d then have to wait for M’s consultant, Dr H, to be consulted and that we might get a final answer by the end of the week.  If he argued our case well enough, then there was a possibility we’d get a yes, but I prepared him for battle.  So imagine my surprise at getting a text message at 3.45pm on the same day saying that not only had the registrar been spoken to, but they had agreed to recommend scopes and, what was more, Dr H had been contacted, given her agreement and scopes would be scheduled for 6-8 weeks time.

The GOSH gastro team have expressed the same concerns about M’s progress as us and made making that big decision for more investigations much easier than I could ever have hoped. So all we need to do now is wait for the appointment date to be set and it’ll be full steam ahead.

Play-date anyone?

It is amazing how something so simple can make such a big difference to a small child.

As M started a new school this September and is still getting to know the children in his class, we decided to invite a new friend home for tea after school.  M chose C, another child who’s new to the school. I ambushed his Mum a couple of weeks ago to broach the subject of whether he’d like to come home for a play, eventually got round to passing on my contact details and finally settled on a day.

Courtesy of gsapublishing.com

Courtesy of gsapublishing.com

This Tuesday I left work promptly to make sure I was in the right place at the right time to pick up M, C and G.  The weather held so they could all burn off their energy and excitement by bouncing on the trampoline and tearing around the paddock like wild things. I chuckled quietly to myself as I heard the 3 of them discussing the ghosts in our house and heard C promising that he would bring back his ghost-detector from home once he’d fixed it – a child with an imagination to match M’s, I thought. I fed them everything-free fish fingers, potato wedges and a variety of veggies determined by the preferences of each individual child.  We even survived M having a soiling accident and successfully changed him without C being aware it had even happened.

Nothing particularly out-of-the-ordinary or revolutionary, you might be thinking and you’d be right.  The bit that made all the difference came when C’s Mum came to pick him up.

Thank you so much for having C home for tea,” she said, “he’s the happiest I’ve seen him since we made the move.”  And then she uttered the magical words, “Would M like to come home to ours for a play-date next Tuesday after school?

Before I’d even had a chance to reply, she continued “I can cook just plain chicken drumsticks with vegetables for them for tea, or you can pick him before tea if you’d prefer.”

This woman, who has swiftly become a new friend, had unwittingly just rocked my world.  In the last 2 years, since we embarked on our free-from journey with M, he has been home to friends’ houses just twice.  The prospect of feeding my food-intolerant child was too daunting to so many of the Mums I’d got to know during M’s first year of school that they just stopped inviting him back after school.  One Mum had even told M three separate times that she’d talk to me about arranging a day and what he could eat, and then never bothered to make that effort.  Needless to say, that was a friendship that quickly fizzled out as M couldn’t understand why the promised invite never came.

So, for someone who’d known us approximately 5 minutes to take M’s situation and tricky diet completely in her stride and willingly offer to have him home from school, has felt like a real blessing.  We’ve got to iron out a couple of wrinkles that are playing on M’s mind – chiefly his medicines and the whole “what if I have an accident whilst I’m at C’s house Mummy” concern – but I’ve got those sussed and I think M is reassured that every eventuality is covered.

ghostbusters

Which leaves my 7-year old eagerly anticipating the opportunity to fix the broken ghost-detector – “though I’m not entirely convinced he’s not just making the whole thing up Mummy” – and me as one happy Mummy.

*I’ve just found this article “I’m not neurotic, my kid has food allergy” which helps you understand      even more about how important this sort of compassion can be to a family supporting a child          with food allergies

Simple Pleasures

When in the midst of dealing with the complicated life that is M, it’s really easy to get bogged down with the problems and overlook the simple pleasures in life.  As the saying goes, sometimes you need to just stop and smell the roses.  Despite the challenges of the last few months, there have been some wonderfully simple pleasures that are a precious reminder of just how good this summer was between the difficult bits:

  • Standing in the back garden with the children and watching the Red Arrows fly overhead

    Courtesy of en.wikipedia.org

    Courtesy of en.wikipedia.org

  • G & M using walkie-talkies made from nothing more than scrap cardboard and their imaginations
  • Drinking an ice-cold glass of home-made lemonade

    Without the "pink"

    Without the “pink”

  • Taking the train into the city and walking around on a local Art trail whilst investigating the area and sights
  • Watching G and M cheer as Andy Murray won Wimbledon

    Courtesy of capitalfm.com

    Courtesy of capitalfm.com

  • Watching G and M then recreate the Wimbledon moment using our washing line and their beach tennis set
  • Late night cuddles with M and early morning ones with G
  • Enjoying some classic Disney films before bed and finding some new favourites

    Courtesy of hdwpapers.com

    Courtesy of hdwpapers.com

  • Home-made burgers cooked on the BBQ SAM_1215
  • Camping in the garden – well this was one for Mike and the kids, I am definitely never, ever going to consider camping to be a pleasure of any kind
  • G & M spending hours out in the garden:  building dens, climbing trees and bouncing on the trampoline
Courtesy of dartmoor-npa.gov.uk

Courtesy of dartmoor-npa.gov.uk

  • Long lazy summer days spent lying on the beach, building sandcastles and splashing in the sea

SAM_1549

  • Perfecting a myraid of free-from, M-friendly recipes and enjoying tasting each and every one!

    Rainforest flapjacks

    Rainforest flapjacks

Dyspraxia support

Courtesy of shoreline-pt.com

Courtesy of shoreline-pt.com

As well as going back to school, we’ve also had M’s referral appointment for Occupational Therapy to support him with his dyslexia and dyspraxia.  We had been warned that we might have to wait up to 9 months for the referral to be made, so you can imagine my delight to be offered an appointment just 3 months into the process.  The therapist, D was fantastic and a lot of the health professionals we’ve seen along the way could learn a great deal from her approach to helping M.

Unsurprisingly, she had not come across EGID before, so had spent some time researching the condition and understanding how this might impact on M before we got to the appointment.  She had read thoroughly the reports completed by the Dyslexia Centre, school and us, but then spent more time clarifying points with me, taking into consideration the change of schools and asking what we were hoping to achieve through OT.  As we chatted, D observed M as he played with the various activities she had set out in the room, including a bat and ball, foam football and low-level balance beam.  Her conclusion was that he most needs the support in improving his fine motor skills, which will directly impact his academic prowess and that working on those will then lead to an improvement in his gross motor skills and balance.

She then switched to assess his writing, cutting and cutlery-holding skills, all of which I had mentioned as areas that I felt needed some work.  M showed his reluctance to write by insisting on discussing each task she set him, obviously in the hope that he could browbeat her into leaving them untouched, but he had met his match.  D listened to his comments, acknowledged them and then prompted him to get on with what she had asked.  He may have grumbled each and every step of the way, but he did them all and enabled D to assess as she needed.

Creating and then dismantling paper-clip chains

Creating and then dismantling paper-clip chains

D suggested a number of games using everyday items – clothes pegs, marbles and paperclips – and explained how these would help build his finger strength.  She set him challenges and played the games with him, so that he could understand what was required and she could check that he was doing them correctly.  What impressed me the most was that D gauged accurately how many games to introduce and how long to play each one such that she didn’t overwhelm him with suggestions.  Playing these games at home several times a week will bring about improvement and I foresee a number of family challenges to see who can perform the best.

A paper plate sun with peg rays to attach every morning

A paper plate sun with peg rays to attach every morning

D also agreed that using a writing slope at school will make a massive difference to his writing ability.  As it is highly unlikely the school will have one lying around, the OT department will arrange to lend one to the school for 3 weeks, which will allow the teachers to assess the difference it makes to his work. This will be followed up by a written recommendation and a school visit, where D will be able to observe M in the classroom setting and see what else might be done to support M and help him achieve, before meeting with the SENCo and suggesting how some funding from their SEN budget will help.

This school visit will then be followed up by a return appointment with M himself, whereby she can see if the daily activities she has suggested have helped and whether school have followed her recommendations and funded the special equipment he needs.  I have already invested in a set of “caring cutlery” to help him at meal-times:

Courtesy of completecareshop.co.uk

Courtesy of completecareshop.co.uk

Whilst we continue to struggle with his gastro health, it is a huge encouragement that there is something useful that we can actively do to improve M’s school-work and performance. He is a bright and articulate child and it will be both fascinating and exciting to see how things develop over the coming months.

A new term

September marks the start of the new school year and an opportunity to look ahead and plan for the coming months.  For our household, September has seen M starting at his new school as well as a number of appointments to make and keep regarding his health. There’s been so much to deal with that, for my own sanity as well as ease of reading, I’ve spread my thoughts over a couple of blog posts.

Courtesy of carevan.org

Courtesy of carevan.org

School-wise, the start of term has gone amazingly well for both M and G, who have enjoyed meeting their new teachers and are slowly settling down into their new school routines.  G was a little nervous on the first couple of days meeting her new teachers (she has 2 who job-share), but her class is the same, so she’s with her friends. It’s hard to believe that my first-born is starting in Year 5 and makes me feel old to realise that I’ve been parenting for nearly a decade.

Sadly, the continued use of Movicol meant that M wasn’t able to start back without wearing a pull-up as we had hoped.  The risk of an accident during school hours and the massive negative impact this would have on him left the school and us in agreement that the pull-up was a necessary evil, and M reluctantly agreed.  It has been hard to judge his real feelings about this as he has been deliberately disengaged from the decision-making, which has been no surprise at all.  He just doesn’t want to face this new reality at the moment and who can blame him? His biggest fear is that his classmates might find out, but the school and I have worked alongside each other to make sure this possibility is minimised.  The pull-up is hidden by his underwear – a sensible pair of trunks long enough to cover it completely – and school suggested he uses the classroom toilet to change for PE, away from prying eyes.

His sensitivity to his “different” lunch-box has been handled well by his new teacher, Miss K, who suggested a special circle time at the end of the first week to introduce his diet and health issues to the class.  By the Friday, M had decided he was open to answering any questions his new friends might have and, as we expected, most of them revolved around what he could or couldn’t eat.  Following that Q&A session, Miss K has also suggested that perhaps we could arrange a “tasting” session for the class, so that they can see, taste and understand some of the foods M has to eat.  M loves the idea of being able to share his diet with his new friends and is drawing up a list of what to take into school as we speak.

Which will make the final cut?

Which will make the final cut?

School have also made allowances regarding his use of the toilets and impressed me by thinking around the matter of which toilets he would need to access.  They considered what could happen if the toilet was in use when he needed to go and have given him special permission to use the Year 6 boys toilet, which is just along the corridor.  They’ve also agreed that as long as the adult in charge is aware he’s dashing off to the loo, then he can forego the need to ask permission before he leaves the classroom or playground. All important when time really is of the essence.

All of this is a refreshing change for us and a real affirmation that we made the right decision in choosing to move schools.  Their positive approach to working with us and with M means that we all feel a great deal more relaxed about the school day.  School are keen that the day is as stress-free for M as it can be and the effect of this on M is clear, as so far we’ve had no toileting issues at school and he is the happiest we’ve seen him in a long time. They really have restored my confidence that M will be supported as he needs and the lines of communication are very much open for us all.

Well, it might be a bit more high tech than this... Courtesy of www.lifeschocolates.com

Well, it might be a bit more high tech than this…
Courtesy of http://www.lifeschocolates.com

Viva Portugal – and our answer on a postcard!

Courtesy of mapsof.net

Courtesy of mapsof.net

Preparing for this summer’s holiday to Portugal went well as we completed the Pellet study with M and I finally answered the question of how to carry all of M’s medicines and foods without paying for an extra bag. So, all I needed to do in the last two days was pick up our holiday money, pack the suitcases and speak to GOSH about the test results from the abdominal x-ray.

Needless to say, the first two list items were quickly ticked off and I even managed to fill the extra suitcase for M without forgetting anything essential.  Tracking GOSH down and speaking to them sensibly took a little longer.  I was anxious to discuss the results of the Pellet Study and what the next step was before we went on holiday, especially given that M’s move up to his new school was imminent soon after our return.  The registrar I finally spoke to on the Friday morning had a real mix of news for me.

The good news was that the x-ray showed that M had passed most of the radiopaque markers – his x-ray was a mix of images 1 and 2 – which suggested that there was no real issue with his gut motility.  The bad news was, that despite 12 days on an increased level of Movicol, M was still heavily impacted. What wasn’t clear was whether we had ever successfully emptied his bowel or if he had become re-constipated during the 5 days he was not taking the Movicol during the study.

The next decision was not an easy one to make, especially with a week abroad on the horizon.  We had to continue with the Movicol, taking 4 sachets daily for the week we were away, which would hopefully keep things moving and empty his bowel out as was so desperately needed.  Both the registrar and I felt it was likely that the 4 sachets would be too much for M’s system, but we really had no other choice and reluctantly I agreed, with a follow up phone-call planned for the first Monday back home. Into the suitcase went the required sachets and extra packs of pull-ups to see us through the week.

Despite the challenges we knew this would bring, we were determined to enjoy the much needed break and the sun.  We set off with plenty of time to spare “just in case”, breezed through check-in and customs, survived the 2 hour wait to our flight and eventually landed safely in Faro.  An hour’s taxi ride to the resort, a quick late night tuna pasta dinner (courtesy of the supply suitcase) and we were into bed for a good night’s sleep before our holiday started properly.

SAM_1590  SAM_1591

The week was amazing.  The kids loved every moment of both the beach and the pool and  we were all amazed at how much their confidence had grown in the last year.  M revelled in splashing about and jumping waves, which was something he wouldn’t do the first time we went just 2 years ago.  He was also brilliant at wearing a pull-up under his swimming trunks to avoid any unwanted problems in the water.  It was far more challenging to change him because of the combination of damp bodies, tight-fitting pull-ups and wet trunks, but we survived it.

He had his moments and we had a couple of major melt-downs as he let out his frustrations about his condition and all that was going on.  Unfortunately, Mike suffered the brunt of this as he’s not usually the one on-hand all day, but he survived it too. The upside is that it gives more ammunition and examples to pass on to the CAMHS team when we see them later this month to argue the case for M needing more support to cope with his emotional and psychological well-being.

M's trusty friend "Cat", came on holiday with us and the maids made M smile by dressing him in M's pjs

M’s trusty friend “Cat”, came on holiday with us and the maids made M smile by dressing him in M’s pjs

We even managed our meals.  This year we chose to eat breakfast and lunch in our apartment every day, rather than venture to the breakfast buffet provided at the hotel.  It was a difficult decision because both children love the opportunity to chose from the vast array of food available, but we knew that it would be a far too limited choice for M.  Instead we ate out every evening at a number of local restaurants along from the hotel.  One of the best things about eating out in Portugal is that it was surprisingly easy to accommodate M’s food restrictions.  His love for most things fish and seafood meant that we were able to order fresh fish that was cooked in olive oil with a side order of chips and he was satisfied.  We found that most of the restaurants were helpful in preparing prawns or fish without any sauces and we skipped dessert as none of us needed it.

As expected, the movicol made the week difficult, but it made a big difference to be dealing with all the stresses and strains in a sunnier climate.  We all needed the break from the daily grind at home and I came back feeling refreshed and ready to tackle the challenges of the new term.

One of the many sandcastle creations M built during the week

One of the many sandcastle creations M built during the week

This summer

This summer has not been the sunny, fun-filled and relaxing one we were hoping for.  This summer has thrown up a few unexpected bumps in the road which we’ve had to negotiate whilst trying to hang on to our sanity.  This summer has had its highs and its lows, but we’ve got there in the end and have lived to tell the tale, just.

Courtesy of i360life.com

Courtesy of i360life.com

I haven’t been able to share the truth about this summer before now because this summer has been incredibly hard on M.  It is only now that we are through the worst and have a plan of action, that I feel able to talk about it.  I have made numerous phone-calls to GOSH to try and reach a place that has left us all feeling reassured and relatively happy.

At the beginning of July, M had an abdominal x-ray as well as starting on his new medicine, Nalcrom, but we had seen no improvement for him.  To my complete surprise, the x-ray showed that M was chronically constipated and impacted all the way from his colon to his rectum.  The first thing to tackle was clearing his system out, thereby giving him a fighting chance to recover the toileting improvements that he’d experienced at the start of the year.

This meant the return of our old friend, Movicol, a softening laxative that enables the body to better pass the stools without too much pain.  We had used it when G was struggling with her own gastro difficulties, but the intervening 3 or 4 years had rendered my memory somewhat hazy as to how to manage this medicine.  However, for once I felt confident that I knew what I was dealing with.

The plan was to embark on a routine that would see M taking an increasing dose of Movicol to enable the fecal impaction to be cleared from his body.  Once this happened, he would need to continue on a maintenance level to keep his system moving until our next appointment at GOSH in October. Whilst this may sound easy enough, at the maximum level we were asking M to drink an extra 500mls of medicine a day and one that he hated taking and it was a struggle every step of the way.

Courtesy of myblogz.us

Courtesy of myblogz.us

The downside was that, whilst on the increased dosage, M would suffer from even more chronic diarrhoea until the blockage was out and I knew that he would really struggle with this proposal.  Just imagine the horror of being an active 7 year-old boy with minimal control of your bowels and a fear that someone might find out and make fun of you.

On the flipside, the advantage of being in the summer holidays was that we could tackle the problem thoroughly and hopefully resolve it fully before M starts at his new school in September.  I suggested to M that for the relatively short time he was on the medicine he returned to wearing a pull-up.  This would solve any embarrassing incidents whilst we were out and about during the summer and would give him the reassurance that other people wouldn’t know when he soiled himself.  He reluctantly agreed, being obviously torn between the nightmare of wearing pull-ups as a 7 year old and that of being unable to control his bowel when in public.

The first 14 days were hell, but the medicine did its thing and progress seemed to have been made.  He struggled to cope and his fears of discovery and frustrations about his toileting spilled over into his day-to-day behaviour and those of us closest, Mike, G and me, suffered the consequences.  He and I spent time together, seeing who could shout out louder and rant and rave more about how unfair the situation was.  M needed to scream out the tension because it was unfair. Unfair that my beautiful, bright 7 year old was once again subject to the fraility of his body and couldn’t be like all of his friends.  Unfair that I had to hold him sobbing once more because he just couldn’t understand why all this was happening to him and didn’t know how to cope. Unfair that the one person in the world who should be able to make it all better (me), couldn’t guarantee that there was an end in sight. His one over-riding fear was that he would need to continue to wear the pull-ups when he went back to school.  The hardest thing for me was not being able to reassure him 100% that that wouldn’t be the case.  We hope it won’t be for his sake, but as I’ve quickly learned, there are no guarantees especially when it comes to this condition.

Unfortunately, despite the promising start, we discovered blood in a number of his stools as well as mucous, both of which are an indicator of intestinal damage.  Having a plan in place, even if contains new tests and possibly more medicines, means that I know we will get to the point of some answers, although they might not be as conclusive as we would want.

Feeling normal

Courtesy of evotivemarketing.com

Courtesy of evotivemarketing.com

One of the hardest parts of M’s EGID journey is that he no longer feels like a normal child and is massively aware that he stands out from the crowd.  Every day is filled with numerous medicines to be taken, carefully planned meals, aches, pains and a constant awareness of needing to make sure he gets to the toilet on time.  As I’ve alluded to before, M is incredibly self-conscious about his condition and spends a great deal of time worrying that he will be picked on or bullied because of his illness and restricted diet.  He has a tendency to isolate himself in group situations with his peers, though he will spend hours chatting to any available adult who’s prepared to listen.

We refuse to let his chronic illness get in the way of his life any more than is necessary, so he goes to school, takes part in after-school clubs and has friends home for tea just like all his friends.  However, every new thing he participates in has to be carefully assessed and I spend a lot of time talking to teachers and organisers about M, his condition and the consequences they might have to deal with.  We have been lucky that we have never come across anyone who isn’t prepared to work with M’s needs and accommodate them so that he can take part.

fish

A recent week has been a perfect example of how wonderful it can be when M can feel like part of the crowd and not stand out for being so different.

Both G and M have been attending our local Stagecoach theatre school for a number of years and enjoy performing.  They were lucky enough to be part of the 25th Anniversary celebrations for Stagecoach back in March and took part in a massive performance of CATS at the Birmingham Indoor Arena.  We are also avid theatre-goers and love nothing more than seeing a musical on stage.  When I heard that the Youth Music Theatre Academy (YMTA) were running a drama workshop for a week this summer and that they were going to be learning and performing routines from a hit West-end musical, I knew I had to sign the 2 of them up.

G and M have been excited about this opportunity for weeks and, since the start of the summer holidays, have been counting down the days until the course began.  By some strange quirk of fate, Mike and I had booked tickets to take them to see this show on tour the weekend before the workshop began, long before we even knew about the course and it was the perfect introduction to the week.  What made the performance even more special was that some of the cast members were coming out to teach on the course during the week and we spent the interval musing over who the kids might get to meet.

The only grey cloud on the horizon was the difficult time M was going through with his health in the lead up to the course.  By the Thursday of the week before, it was evident that he wasn’t going to find the week easy and I needed to be on site with him for those “just in case” moments that might happen.  Fortunately, Jo (the course organiser) had no issue with my presence and welcomed me and M on board with an excitement that meant a lot.  When you have a child who’s chronically ill, then it’s these little acts of inclusion that make all the difference.

I spent the week sitting quietly with my trusty laptop, tablet, mobile phone and books in a corner tucked away from view, armed with snacks, coffee and anything and everything M might need.  The children knew I was there as a security blanket for them both, but I wasn’t an ever-present reminder that there was anything wrong, especially to those who were meeting M for the first time.  He sang, danced and acted his heart out, learning new routines, perfecting familiar songs and most of all, having an amazing and fun time.  We managed his medicine and his toileting with the minimum of fuss and I doubt that any of the other children really realised that there was anything different about him.

Courtesy of www.oscars.org

YMTA – this Oscar’s for you!

The Friday performance to the parents was fantastic and a real testament to the talents of those who had happily given of their time that week to teach the youngsters some new skills.  We were amazed by how much had been achieved in such a short amount of time. My thanks have to go to Jo, Rosie, Joe, Holly and Zach, who didn’t let M’s EGID phase them, but supported and encouraged him every step of the way.  He had an amazing time and can’t wait for the next workshop to be arranged!  Best of all, M had a week where his health didn’t stop him from taking part and he was able to feel and be as normal as any other child who was there.

Rainforest Flapjacks

Now, you wouldn’t be blamed for thinking that the past 3 weeks have involved little more than baking and eating an array of M-friendly treats.  This week was no exception.  Having attempted the series of lemon recipes as well as the best chocolate cake ever and feeling somewhat delighted with the results, we decided that our next baking efforts were going to be the rather exotically named “Rainforest Flapjacks”.

This recipe came home from school and looked easy enough to adapt for M’s dietary needs.  I will confess right now to having felt a little frustrated by M’s school’s reluctance to cook with him.  The two occasions they have chosen to cook with his class have both conveniently coincided with times when he was away from school.  Do I blame them for not wanting to cope with his complex dietary needs?  Not entirely, but I have had to deal with the fall-out, disappointment and tears at home.

My solution this time round was to suggest to M that he asked for the recipe so that we could attempt it at home.  In due course, the printed sheet made its way into M’s drawer and finally came home in a decent enough state that I could still read the list of ingredients.  Everything was easily substituted for M-friendly alternatives and, in the case of the oats, G-friendly millet flakes.  I had the full complement of ingredients in either the fridge or the cupboard and so we were ready to start.

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As ever, I took my chances and doubled the quantities to make sure I had enough flapjacks to last the week and so we began.  The process was easy, the children loved measuring out the ingredients and the odd bit of a chocolate might have strayed into an open mouth along the way.  We used a bar of the wonderful Moo-free Cranberry and Hazelnuts chocolate which is both soya- and dairy-free, though plain dark chocolate would work just as well.

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The end result was a delight.  Both children devoured the first few pieces without hesitation and the double quantity only just lasted the week.  G even asked if I could make it without the nuts so that she could take a slice for her packed lunches at school from September.

In case you’re wondering what makes them “Rainforest” flapjacks (as Mike asked), my answer is simple.  They contain bananas, chocolate, are perfect for our 2 little monkeys and the name linked in perfectly with M’s topic for school!

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This post is an entry into the Foodies100/Schwartz Flavour of Together challenge – you can add your own exotic Flavour story via this link

My child with Super powers

As a parent, we all go through that experience of self-doubt and belief that we’re doing it all wrong.  As a parent of an unique child, a child with unexpected needs, that self-doubt is part of your every waking moment.  You begin to wonder if it’s something that you did, right or wrong, that has led to the position you find yourself in.

A good friend recently sent Mike and me a link to this wonderful blog post that really spoke to her, and our, hearts.   Through it I discovered the truth that I have children with super powers, rather than with special needs.

Courtesy of kotaku.com

Courtesy of kotaku.com

We all know that it’s not easy being a parent and when you add into that mix an illness or condition or special need for your child, you rapidly begin to wonder why.  Almost every day I question why M has this condition.  Is it something I did, or didn’t do during my pregnancy?  Is it faulty genetics on my side, or on MIke’s, that have led to these problems?  Could I have done anything to change the outcome that my boy has to live with?  Of course, the answer is no.  He is who he is and who God made him.  I don’t have the answers as to why his life has been so medically complicated and why he continues to have to fight a daily battle for good health, but I also can’t live my life playing the blame game.

I struggle when talking to expectant Mums who are holding forth that they don’t mind whether they have a boy or a girl as long as the baby is healthy.  I remember saying the same thing myself, so why is it that that wasn’t the card we got dealt?  I smile and nod and bite my tongue, because I can’t promise that for them that’ll be their experience.  I hope it is, I really do, but I know that there are no guarantees in life.  We are the exception to that rule.

During a recent conversation, I was asked whether I wished I could turn the clocks back and make different decisions to those I made 10 years ago.  I didn’t have to stop and think because I know the answer. No.  The mountains may be high and treacherous, but the view from the top is amazing and my answer is no.  The valleys can be dark and bleak, but the sunshine reaches down and touches those darkest of places and the answer is no.  I may get knocked down far more times that I thought possible and struggle to get back up and keep on with the fight, but my answer is still no.  I would love for life to be easier for both M and G, I wish for their medical problems to disappear in a heartbeat, but I love them and I love being a parent to children with super powers, even if the going is sometimes really, really tough.

Lake Huron, Canada

Lake Huron, Canada