The Best Chocolate cake in the World

We’ve enjoyed a peaceful weekend away in South Wales.  The weather hasn’t been the idyllic temperatures and sunshine of July, but we had a great time anyway.  The odd rain shower or clap of thunder didn’t stop us celebrating my Uncle’s birthday in style.  We had a BBQ and buffet feast, including my now infamous Lamb and mint burgers and G and M insisted that I made a birthday cake to mark the occasion.

Courtesy of fanpop.com

Courtesy of fanpop.com

Last week’s Lemon drizzle cake was a big success, but I was still not satisfied with the granular nature of the sponge that comes from baking with rice flour.  Since then I have been searching for a recipe to make the perfect rice flour cake and discovered this one that assured me that the granular texture would be a thing of the past.  Having uncovered such a promising recipe, I just needed a reason to bake it and what could have been better timed than a family birthday?

For the first time I ventured into the mystical world of cooking with xanthum gum – a substance much mentioned in gluten-free cooking, but something I had yet to actually use.

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We mixed together the xanthum gum, baking powder and bicarbonate of soda and once again watched the chemical reaction between that and the white wine vinegar that the recipe required.  M was enchanted by listening to the ingredients fizz and watching the bubbles of carbon dioxide rise to the top of the mixing bowl – “just like the volcano we made with Daddy”.

I had erred on the side of caution given my previously chronicled inability to bake cakes thatrise and made up one and a half times the quantity of cake mix.  I needn’t have worried.  Perhaps xanthum gum is the answer to my baking issues, I just don’t know, but I had more than enough cake mix to make a double layer cake and a dozen cupcakes too, all of which had a lovely depth to them.

I decided to use the classic flavour combination of chocolate and raspberries and layered the cake with raspberry jam, vanilla butter icing and dried raspberries.  I finished it with a garden-themed decorating scheme and was proud of, at very least, how the cake looked.

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That evening, I nervously cut into the cake and served it to the assorted, gathered family members.  The cake was beautifully moist, the chocolate sweet but not over-powering and, best of all, there was not one single sign of that granular texture I’ve come to loathe when baking with rice flour.  G gave it a resounding 10 out of 10, M stated that it was the “best cake ever, cooked by the best Mummy ever” and even the harshest of critics complimented me on how delicious the cake was. So the conclusion I’ve reached is that this is a cake recipe to treasure and I’ve now just got to work out how to adapt it for as many different versions and occasions as possible.

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A taste of sunshine

The weather may have turned a little grey and damp once again, but at the end of last week, we decided to bring a taste of the sunshine into the house and spent Friday afternoon baking.  I’d been promising the children a baking afternoon for a while and Friday seemed like the perfect opportunity and a great end to the first week of the holidays.

Despite a little active discussion about what we could make, we settled on Lemon Drizzle cake.  I searched for a vegan recipe and found this wonderful one by cookery blogger, Sharon.  I needed to adapt it a little to accommodate M’s wheat- and gluten-free requirements, but most of the hard work (making it egg-free!) was already done.

Courtesy of buyfruit.com.au

Courtesy of buyfruit.com.au

We dashed out to buy the missing ingredients – lemons – and then returned home, rolled up our sleeves and got started.  The children had a wonderful time.  G had the responsibility of reading the recipe and method out loud for M and me to follow, whilst M became chief-mixer.  We watched the “chemical” reaction between the vinegar, lemon juice and sugar and discussed how the frothiness should help make the cake light and delicious.  My adapted recipe can be found here.

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The end result was a great success.  M loved it, though G felt it was too lemony!  Having filled the fridge with lemons, we decided to make the most of them and made lemonade using my pink lemonade recipe without the cranberry juice.  We then used half of the lemonade to make some ice lollies, perfect for the hot weather.

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All in all, a very successful Friday afternoon!

This post is an entry into the Foodies100/Schwartz Flavour of Together challenge, if you have a great flavour story to share, you can easily do it here

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

Proud Mummy moments

A little while ago, I wrote a post about everyone needing a hero and pondered on who M and G would adopt as their heroes as they got older.  This week I’m adding to my choice of heroes and am including my children at the top of my list.

In their own ways, they have been brilliant over the last few weeks and I am so proud of them both.  This post is a tribute to them and their awesomeness and will act as a good reminder to me on those occasions when they’re pushing my patience to its very limits.

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Marvellous M

This week I’ve had M’s school report and Stagecoach report to enjoy.  I was equally thrilled with both.  I expected the Stagecoach report to be glowing, after all, as his drama teacher stated, “M was born to perform on the stage”, but I was a little more apprehensive about his school report.  I know his behaviour is impeccable there, but academically this has been a tough year.  The last 5 weeks, since we got the dyspraxia/dyslexia diagnosis, have seen a real turn-around in his attitude to his school-work.  All the aids we’ve put into place have seen him make huge strides forward and he’s much more confident in how well he can do.

To my delight, we also finally got to see the short charity film that M took part in about 6 weeks ago.  It focussed on Domestic violence and is hard-hitting though not overly graphic.  He performed well and enjoyed every moment of the filming.

He’s also understood that G has had to focus on her own school-work (see more details below) and has given her space to just sit down and get on with it.  I was immensely proud of his attitude on the last night of working on it, when he had to entertain himself for the best part of 2 hours as G and I reviewed, finalised and polished her final effort.  I heard not a word of complaint from him and he regularly checked in with me to make sure I knew where he was and what he was up to.

However, it’s not just his reports that have made him my hero this week.  It has been his approach and stoicism to taking his medicine.  As I’ve mentioned several times, his recent flare-up has been hard and has really knocked his faith that things would improve.  The revolution of Grandma’s jam, as mentioned in a previous post, has helped enormously when it comes to his new medicine.

To put it simply, he’s taking it.  Despite feeling poorly, hating the taste and with a depleted appetite, M is taking all his medicines every day without argument, or at least with the minimum of fuss, because he knows he needs to and there is still a small spark of hope that this will help hiding somewhere inside.

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Gorgeous G

I’ve also had the pleasure of G’s music, school and Stagecoach reports to read.  Each report commented on her hard work, positive attitude and determination to give 100% to every new task set.  Despite her nerves, she has performed solos on her clarinet at school and in the end of term performance for Stagecoach and really gave her all.  She listens well, takes instructions and applies them to the task in hand.  She doesn’t have M’s academic struggles to cope with, but she does have to deal with me having to give attention to M at home when they’re doing their homework and she’s worked hard to complete as much of hers on her own as she can.

Mr.G, G’s teacher this year, praised her for being “always cheerful, courteous, co-operative and helpful…very reliable and always willing to help with a smile”; whilst her Head teacher commented that it was an “impressive report” and her continued efforts would see her having a “very successful Year 5.”

G has been working incredibly hard over the last 5 weeks on a project for school, where she had to choose her own topic and complete independent study and research for it.  She decided to write about Canada and has spent her time reading reference books, researching on the internet and talking not only to Mike, but her cousins and grandparents too.  The piece of work she has produced is amazing and she is rightly proud of it.  She finished it by preparing a powerpoint presentation and photo montage to show in class, which was a learning experience for us both as it’s not a piece of software I’ve particularly used before.

Most importantly, despite her disagreements with M and the frequent sibling wars we have in the house, G has also been aware of M’s struggles with his new medicine and has encouraged and cheered him on every step of the way. She has given him massive support and has managed to coax him to take “just one more mouthful” when he’s found it especially difficult and my powers of persuasion are failing.  M is very lucky to have a big sister who will hold his hand and let him cuddle her teddy bear when times are rough.

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Sometimes my children are a challenge and I find myself rolling my eyes as I pull them apart for what feels like the twentieth time that day.  Sometimes I want to disappear from their world and just go back to being “me” – not head chef, not referee, not problem-solver extraordinaire.  Today, I’m happy and proud to be Mummy and to shout out loud about all their achievements.

There's nothing like team-work!

There’s nothing like team-work!

School’s out for summer!

I have that song by Alice Cooper bouncing around in my mind as I type.  I wish I could have it playing in the background as you link to this blog post, but the best I can do is point you to this You Tube clip.

We’re in the final stretch of the school year and the end is tantalisingly close.  G finishes school tomorrow and M has one last day on Monday.  The promise of 6 weeks of summer (well I can but dream) to enjoy is wonderful.  A time for us all to rest, recuperate, have some fun and hopefully see M return to better health for the start at his new school in September.

The last 2 weeks have been mixed.

Courtesy of telegraph.co.uk

Courtesy of telegraph.co.uk

Last weekend, Mike took the kids away on a “Dads and Kids” camping weekend, organised by other Dads in our church.  The weather was amazing, they had a great weekend, got to build on some fantastic friendships and I got to have a weekend off!  I wish I could say I spent the weekend doing nothing but relaxing and spoiling myself, but the reality is that I spent the weekend catching up on some long overdue household chores – ironing in this temperature is no mean feat – and trying to stay cool.

Courtesy of export-forum.com

Courtesy of export-forum.com

Unfortunately, M’s hoarse throat on Friday afternoon turned into, well, I’m not 100% certain what it turned into, but it might have been croup or a heavy cold or a chest infection or any combination of the above.  By Sunday evening, his temperature had shot up to over 39 °C and that started 3 days of a very poorly M.  He had a sore throat, high temperature, complete loss of appetite, croup-like cough, no energy to do more than sit and watch TV and felt sick every time he took his new medicine.

The problem is for M that he just has no reserves to fall back on when he becomes ill.  His body can’t cope with the illness and his EGID symptoms will typically flare too.  He has, however, headed back to school today; the lure of the Year 2 leavers’ disco after school being too great for even my poorly boy to ignore.  It is such a shame that he has missed 3 days off this week as he moves on from the school at the end of term and will miss his friends.

Courtesy of yola.com

Courtesy of yola.com

Our plans for the summer holidays are simple.  Mike and I will spend most of our weeks working, whilst G and M spend some time with my Mum.  We are off to Portugal for a week once again and I’m already beginning to plan what foods I will need to take with us.  The time I have at home will be spent playing in the garden, investigating our local area and trying out some new baking recipes that I’ve been given by friends.  Most importantly, we will be trying to encourage M’s body to recover and hopefully see a return of his appetite. The hot weather at the moment isn’t helping, but I would love to see him eating as much as he was even a fortnight ago.  We don’t have any return visits to GOSH planned until October, but I will be putting in another call to the gastro team this week to see if there’s anything else we should be doing or if they do want to see him ahead of the next appointment.

Most importantly, my plans include ice lollies…lots and lots of M-friendly ice lollies!

Courtesy of lovefood.com

Courtesy of lovefood.com

Grandma’s Jam

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A couple of weeks ago, as we were talking about him starting his new medicine soon, the impact of this current flare up on M became evident as he sobbed in my arms “What’s the point Mummy?  The medicine won’t work because none of them are making me better”.

To hear that your 7 year old is feeling that low and despondent simply breaks your heart. I struggled with knowing how to encourage him to try yet another medicine, knowing that so far our 2 year journey hasn’t waved the magic wand we’d all been hoping for and, whilst things are so much better than they were back then, there’s still an uphill struggle to face.

The biggest battle was finding a way for M to take it.  He has to take this one 4 times a day, which means I have to send it into school and can’t send it in its capsule form because he finds that too difficult to swallow, though he continues to persevere to take it the “grown-up” way.  The registrar at GOSH suggested we broke the capsule and mixed the powder into a drink or his meal.  The taste is vile and tainted everything we tried.  He didn’t like it mixed into his food or drink and I was left scratching my head about this one.

As I sat at the kitchen table wondering how to avoid pinning M to the ground and forcibly pouring it into his mouth – don’t laugh, I’ve been there before – I knew where to seek the advice I was after.  Thanks once again to the amazing FABED community, I got a great suggestion which would not only make it more palatable for M, but also easy for the school to administer.

Jam.

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A spoonful of jam into which you mix the contents of the capsule is an ideal M-sized mouthful and one that he’s willing to take.  Grandma’s home-made jam, sent all the way from Canada, is the perfect vessel for his new medicine.  He loves Grandma’s peach jam anyway, but his preference for his medicine is strawberry.  Fortunately, a care parcel arrived at the beginning of July containing 3 new jars of the strawberry elixir and that will certainly help.

SAM_1309The only question now is, having discovered the secret to successful medicine-giving for M, just how long this little lot will last?!

7 jars and counting

7 jars and counting

In memoriam

Why is it that, as soon as you find a particular product or brand that meets your needs and that everyone enjoys, it gets discontinued?

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I’ve experienced this many times in my life from a favourite pair of shoes to G’s blanket, but none of these has been as frustrating as the disappearance of foods that not only taste good, but are also M-friendly.  It’s a hard enough challenge to feed M and G at the best of times, but when facing the prospect of losing a product purely on the whim of a supermarket, it really takes the proverbial (M-friendly) biscuit.

The latest item to disappear from the local shelves has been Tesco’s frozen free-from pizza bases.  These have been a godsend to us as they have been the only pizza bases I have found that are not just wheat-, gluten- and dairy-free, but are egg-free also.  I only discovered them around 8 or 9 months ago, but they were a welcome addition to our monthly groceries.  M enjoyed feeling “normal” again – as normal as you can be when your pizzas can no longer be covered with cheese – and all was well, for a short time at least.  Fast forward 7 months, a quick trip to Tesco to stock up and not only were the shelves bare, but there was not even a hint that these bases had ever existed outside of my very own over-active imagination.

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I have been assured by Tesco that this product is still in their free-from range, but sadly my local stores disagree.  It may just be that it didn’t sell enough for them to continue to stock it, but I haven’t been able to find it anywhere within a reasonable radius of our house.  Well, it was a great 7 months whilst it lasted.  Thanks Tesco for bringing such joy to our household; and for then snatching it away without a moment’s notice.  I’m back to perfecting my own pizza base recipe, but have lost the opportunity of deciding to have pizza for lunch and having it ready 20 minutes later.

This hasn’t been the first food to disappear without warning from our lives and I doubt it will be the last.  I understand that supermarkets are focussed on their profit margins and that our dietary needs are out of the ordinary, but I am left frustrated when something that is, for us, life-changing, vanishes.

Of course, sometimes there can be a way round the missing item.  It is possible to order a far wider selection of M-friendly foods from on-line shops than I will ever be able to find in my local supermarket, but then I am hit by higher prices as the retailer is dealing with a captive market.  Once you add on postage costs and allow for delivery time, you’re back to a scenario that involves a lot of planning and little spontaneity.  I’ve even encountered an on-line retailer who requires me to order a minimum of 6 refrigerated items to make it cost-effective for them and I understand that, really I do; but seriously, who needs 6 everything-free cheeses when really you just want one to try?

lilies

So, this post is in memoriam of those wonderful treats that are now gone, but not forgotten: the pizza bases, the sausages, 2 types of mayonnaise and the list goes on.

And, if anyone has a recipe for the perfect everything-free pizza base, or even an everything-free mayonnaise, please let me know!

BBQs and Bakewell tarts

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The incredible summer weather that we’ve been enjoying this weekend, can only mean one thing; it’s time for a barbecue.  True to form, by around 5pm on Friday evening, the shelves of all the local supermarkets had been cleared of the sausages, burgers and other BBQ meats, but for once that didn’t spoil our plans.  Most of the BBQ selections available contain wheat, gluten or even soya, which makes them unsuitable for use in our household.

Instead, I took to a recipe that we developed after seeing a similar meal prepared on Canadian TV programme “You’ve gotta eat here“.  For those of you who haven’t seen this series, and I highly recommend that you don’t even attempt to watch it when feeling peckish,  presenter John Catucci tours Canada, searching out exceptional meals found at various cafes, diners and restaurants across the country.  The food featured not only tastes good, but often comes in proportions that defeat even those with the healthiest of appetites.  Whilst the burgers we watched being made were traditional in using beef, I adapted them to use family favourites, Welsh lamb and fresh mint.  You can find the recipe here.

The final recipe is easy and quick to prepare, delicious to eat and best of all, contains nothing that is not M-friendly.  They take around 5 minutes to cook on the BBQ or indeed in the oven and were perfect for a Saturday lunch in the sun.

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One of things that M has been missing, other than the by now famous egg mayonnaise sandwiches, is Bakewell tarts.  Around 12 months ago, we had discovered Costa‘s gluten-free Cherry bakewells and, as they were dairy, soya and wheat-free and M was trialling egg at the time, we were able to try them out as a treat.  M loved them and we had found something he could eat when we popped out for a coffee or were on a road trip.

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However, this January’s decision to tighten up M’s diet meant these had to go back on to his forbidden list.  It was a disappointment as there is so little available when we’re out and about, but we had the hope that the next trial of egg would mean that he might be able to start eating them once again.  Sadly, the current relapse and subsequent medical response means that there is no likelihood of this for the foreseeable future.

M has been hit hard by his current flare-up and so I decided to make a weekend of it and bake some much needed M-friendly treats for both M and G.  I quickly decided to investigate whether there was any possibility of making a M-friendly Bakewell tart. Having never even attempted to make Bakewell tarts in my lifetime, even before all the food allergies hit my kitchen, I looked up a recipe to see if I could adapt it.

I was confident I could make a reasonable everything-free pastry base, having successfully mastered pastry at Christmas for mince pies.  I have quickly learned that vegan recipes are my friends as they don’t contain any animal products and so instantly remove the issue of being dairy- and egg-free.  So, I quickly moved on to the next item on the list, raspberry jam.  Fortunately, M suffers no ill-effects from fruit jams at the moment, so that was an easy tick and on to the final element of the recipe: the frangipane.

This filled me with dread.  Frangipane is an almond-flavoured sweet pastry cream which, depending on the particular recipe you decide to follow, contains anywhere between 1 and 3 eggs and I just couldn’t see a way round it.  With little hope and as a somewhat last-ditch attempt, I used that faithful friend, Dr Google, once again to see if someone, somewhere had created a vegan alternative to frangipane.  Imagine my delight on discovering this wonderful recipe from fellow blogger, lucysfriendlyfoods.

I noted the ingredients, checked my store cupboards to see what I already had in stock and drew up my shopping list.  A quick visit to the supermarket and we had everything I needed to bake this masterpiece.  To my delight, every step of this recipe was easy to follow and put together.  40 minutes in the oven and my work was done.

SAM_1240M was thrilled and had to try a slice before it had cooled fully.  The slice I gave him disappeared quickly and his only comment was that he would prefer me to make individual tarts next time.  What’s more, G also tried some and enjoyed it.  All in all, this weekend has been a resounding success, be it the BBQ burgers or the Bakewell tart.

Where there’s hope

“Where there’s hope, there’s life.  It fills us with fresh courage and makes us strong again”

– Anne Frank, The Diary of a Young Girl

This has been a quote that has resonated with me over the last week. As I wrote in my last blog, we have been struggling with a relapse that has left us all feeling despair and wondering what our next steps were destined to be.  Dealing with IT changes and financial year-ends at work, as well as M’s challenging behaviour at home, has left me feeling battered, bruised and emotionally fragile.

In the midst of the week, I desperately needed a little hope to remind me that there is more to life than the rubbish I’ve been dealing with recently and it came on Thursday, from what was, to me, a surprising source.

school

M is fast-approaching the end of his final year in Infants and will be moving up to our local Junior school in September.  G has been there since Christmas and has really flourished and we felt that it was the right place for M to continue his education.  We haven’t had the support we had hoped for or that we are entitled to from M’s current school and I have been concerned as to whether things would improve when he made the move.

On Thursday, I arranged a meeting with the Head teacher, SENCo (Special Educational Needs Co-ordinator) and class teacher to discuss all of M’s needs from the EGID to the newly diagnosed dyslexia and dyspraxia.  I spent considerable time reading around what we were entitled to in terms of support for all of these issues, spoke to our local authority about whether we could hope for any help from them and what exact questions I needed to be asking to make sure my boy gets the help he so desperately needs in the classroom setting.

meeting

I went to the meeting with the lowest of expectations as I know how hard the world of SEN can be from following the experiences of others and talking to those in the know, but I was quickly proved wrong.  The staff members were interested in M, asked questions along the way and made suggestions of how best to help him within the classroom.  They made copious notes about what small things we have already found help him and where we need to make improvements to support him more.

The SENCo had already put a phone-call in to his current school to ask for information from them about what procedures, if any, they’ve put in place for him and had read through the report from the Dyslexia Centre which contained the Educational Psychologist’s recommendations for help.  She checked whether we had made the referral to Occupational Therapy, which our GP did during the week, as she was happy to do that for us, but felt it would be quicker coming from the GP than from school.

Even before the OT referral eventually happens, the school are happy to support his dyslexia and dyspraxia by:

  • the use of a writing slope (provided by us!) in the classroom
  • the use of triangular pencils and pencil grips (again from us) in the classroom
  • photocopying or printing worksheets onto yellow paper as this helps M to see writing clearer
  • the use of lined, yellow paper when he’s writing or doing spelling tests, where practical
  • the use of a stress ball to warm his right hand before he starts writing
  • encouraging him to use a yellow overlay when he’s reading as this helps him track the words

Then we got to the biggie, the matter of M’s EGID, multiple food allergies and his current frustrations and emotional issues surrounding it.  I printed out a letter for the school, which I sourced from FABED and which I could personalise to highlight M’s exact condition, allergies, medicines and reactions.  Both his class teacher and the SENCo gave the document a quick scan and then listened intently as I explained the finer details of what this condition entails.

One of my biggest concerns was how they would handle it if M experienced a soiling accident at school.  We have been fortunate that over the last 3 years of his education, this has happened only a handful of times, but given his current relapse and all the anxieties of moving up to a new school, I wanted to pre-warn them that this could be an issue.  They instantly agreed that there would be a need for additional support for M in case this happened and wanted to discuss it further with the Head, particularly as they don’t currently have a shower or suitable facilities to make changing him easy.  At no point did I feel that this was an inconvenience and whilst I don’t expect miracles, or funding, to happen overnight, I am confident that they will find a way to make sure his needs are met.

ticklist

I had discussed the meeting with M the night before as I felt it important that he understood that the school wanted to help him and also to gain an insight into whether there was anything he was particularly worried about regarding the move.  M has had some issues in building friendships and he was worried that the other children in his class would ask him a lot of questions and then be mean to him because of the food allergies.  He is overly sensitive and as emotionally fragile as me at the moment and this was obviously playing on his mind a lot.

I raised M’s concerns and was thrilled to hear his class teacher instantly suggest that they discuss his food allergies as part of the circle time during the first week of term.  They will be talking about all the children and asking them to share something about themselves, so will be a perfect opportunity for M’s allergies to become known in a non-confrontational way.  M can choose to have as much involvement in that discussion as he wants and will help him understand what the other children are told about him.

The staff were concerned and interested enough to reassure me that they would do everything they could to support M in school.  They will be working on a health care plan as well as some short-term targets that will cover all of his health issues and educational needs.  They will ensure that all adults who come into the school, and not just those dealing directly with M, are made aware of his multiple allergies and that his photo, name and list of those allergies will be displayed in the staff-room.  Most importantly, they will maintain a strong communication link between us and them, to make sure that any problems that arise either from their point of view, or from home, are dealt with quickly and not left to develop into something worse.

hope

My difficult week has ended with some hope that, whilst I can’t control M’s health, we will be able to influence his education and that hope really has given me some courage and has renewed my belief that we are strong enough to walk this path.

The psychiatrist’s couch

The thing about blogging is that, as well as sharing our experiences with others and maybe helping those who are facing similar journeys, it has become a form of cheap therapy for me.  I can pour my heart out into my words, delete those that needed to be said, but not shared and publish the rest for the world to see and comment on.  For those of you who know me well, you will understand that I’m not very good at sharing when I’m struggling with life, even to my nearest and dearest, and yet I can express my emotions through a few deft strokes on the keyboard almost without pause.

blogging

My Mum, who I know will be reading this and rolling her eyes (and yes, the phone-call will come later), frequently says she doesn’t understand the need to share everything with the world at large which so many of us do these days, be it through blogging or social media such as Facebook or Twitter.  Is there an easy or obvious answer to that why?  I can’t comment on why others share the most intimate details of their mundane lives, but I know why I do it.  I have a story to tell and life experiences to share.  When I started my blog I couldn’t anticipate how many people would read and follow my musings, but as I approach the 2,000th view of my blog, I am flattered that people have read something that has resonated with them.  I know that some posts will be far more therapeutic for me than interesting for you, my reader, and I thank you that you’re prepared to bear with me and keep on reading.

The rest of today’s post is very much in that vein as life with M is proving difficult right now and I need to lie down and share from the psychiatrist’s couch.

Couch

Since M’s relapse back in April, we have been waiting for his system to settle and for things to improve and return us to where we had been at the start of the year.  Our GOSH appointment in May had reassured us that his gut would repair and they spoke positively about the possibility of trialling one of his forbidden foods and even reducing his medication over the next 6 months.

Unfortunately, life hasn’t turned out that way and instead we are caught in a downward spiral and seem to be sinking fast.  Our weekend at Legoland was a real step back to where we had been and much nearer the beginning of our journey then we were happy to be. As well as the return of multiple soiling accidents with chronic diarrhoea, M has suffered from stomach cramps, overwhelming tiredness, fluctuating appetite and blood in his stools.  He is obviously struggling with his emotions and frustrations and is just generally out-of-sorts.

My conversation with our ever-wonderful dietician last week confirmed my inclination to speak to M’s gastro team as we really need to get him back on track.  I was worried that we would be asked to remove something further from his already restricted diet, but the registrar told me that that wasn’t the way forward right now.  Instead, we are introducing another medicine into the mix to try and suppress the reactions he’s experiencing and are being sent to our local hospital for an abdominal x-ray.

There are no easy answers to this problem for the time being.  We don’t know why his small body has  gone back into hyper-drive in response to the food allergies and we are feeling helpless in our inability to regain some semblance of control.  If the x-ray is clear, which we’re expecting it to be, then the next logical step is another set of scopes, but that isn’t an easy decision to make because of M’s problems with anaesthetic.  We also know that we still haven’t removed the possibility of moving M to the elemental diet from the table either and that seems like a daunting prospect.

The one thing I have learned from the wonderful families we met through FABED is that we’re not on our own and that however hard the next step might seem to us, there will be somebody else out there who has walked that path before us and will hold our hands along the way.

tea

What’s more, a cup of tea or coffee and a chance to escape the EGID world, even for half an hour, is great therapy too.