Out of the mouths of babes!

My husband was proof reading this blog recently and Alexandra wanted to know what he was looking at. I explained that I sometimes wrote about her being a Coeliac so that other people would know what it's like.
'Well they could always ask me' was her very practical response. Great idea, I thought, get the five year old writing, she'll probably have a much more interesting take on things than I do! So I asked Alex what she would like to tell people about having Coeliac disease --and this is what she wanted people to know:

• It's good being gluten free because you get to be special.
• You can play with your friends still, even though you can't have the food that they have.
• You can make food that is gluten free for yourself when you're older.
•  If your grandma or grandad don't know you can tell them what's gluten free and what you can have. 
• You can't have the same pudding that your friends have even though you might like to try it.
• When I have gluten I get sick and I go home before my friends if I'm at school. 
• It feels bad in my tummy and just in my heart. (?!)
• A good nights sleep helps me feel better because ill people need a good nights sleep. 
• When I go to the doctor they give me a blood test, but when I was little I was sick and I had to go to the hospital but I wasn't even five then, I was one. Was it 10 years ago mummy? (Obviously need to work on the maths a bit!)
• That's it 'cause that's a lot of words isn't it?

• Oh wait, can you just tell people even though God's with me I can still be poorly, so that's ok.

So there you have it, all you need to know about being a Coeliac from a five year old's perspective covered!

Plus a drawing of her being sick- nice!

Time flies when you're having fun!

Well, I can't believe it's exactly a year today since I started writing this blog. My posts started very enthusiastically and expeditiously and have gradually dwindled and spread out a little as I've gotten on (and off and on again) my soapbox and vented my spleen about the various niggles and challenges I have had. However, I think that's the case with most blogs, unless the authors get into the commercial realms and although the frequency of posts has reduced, my enthusiasm for the topic and my love of writing about it has certainly not.

My initial aim in starting the blog was to share my experience as a mum with a child with Coeliac disease, in the hope that it might be of some use or interest to other parents in similar circumstances. What I have found is that, through writing, I have gained a way to clarify and get some resolve around the events and situations that we have been faced with. I regularly encourage my clients at work to journal about their experiences to gain catharsis, and can now honestly say that I have first hand experience of this benefit of putting pen to paper (well, finger to keyboard at least). I have also had the privilege of having other parents and people with Coeliacs (and other autoimmune illnesses, some of which I was completely ignorant about) share their stories with me and have learnt a multitude through their experience. Through wider exploration of the web and exposure gained from my blog I have developed a little more insight into 'the gluten-free community' and the support available, from both commercial food companies and charitable organisations who work tirelessly to raise awareness for those who have to lead a gluten-free existence.

The modern day methods of communication being as incredible as they are, there is a little button that you can press when you write a blog that tells you who is looking at your blog, how they find it etc. This has been a revelation and a real source of encouragement, in that I had expected my family and friends to have a little nosey at the blog out of politeness and support, but had not expected much interest beyond that. The little button tells me (although it may be lying to stroke my ego), that people from all over the world have looked at the blog, including Russia, Australia, Germany, Peru and the Ukraine among other countries. How exciting to think that the world, although huge, can be brought closer through writing.

If you enjoy my musings, don't worry, this is not an epitaph, but I do want to take the opportunity to say thank you to everyone who has supported and encouraged me in my first year of writing and to anyone who has taken the time to read through the ramblings and rants.
(Oh, and thank you of course to my gorgeous girl Alexandra, without whom I would probably roll my eyes when someone is being 'awkward' in a restaurant, think that 'gluten-free' was another fad diet, and without whom my life would not be so complete- if a little challenging at times!)

Are you sitting comfortably....then we'll begin! (Story-telling for Coeliac's.)

Don't you just love getting surprise parcels in the post! I was thrilled when I got home from work recently to find a package from my aunt, who lives in Australia.

Since Alexandra was diagnosed with Coeliac's, Grace has been very kind in sending over gluten-free goodies. (Top of Alex's list has been the Orgran Outback Animal Cookies (http://www.orgran.com/products/104/) which are the perfect size for kids.)
This time, the treat was a children's book, written by an Aussie author.

Great minds think alike!
Spookily, I had been on the look out for a similar children's book. When I picked Alex up from nursery recently one of her little buddies asked me why she couldn't have one of the sweets which were sitting in the basket for the kids to take home. I didn't have time to answer (the girl's mother was rushing away in a bit of a hurry), but it did make me think that it might be useful to explain to her friends about Alexandra's condition.  If other children her age are anything like her, they are full of questions, some of which are easier to answer than others. (What sound do bats make?....no Mummy, make the sound!, What does God look like? How do snails get their shells? Why do we need poo?- answers appropriate for a four year old on a post card please!)

What's the story?
With Alex starting school in September, she'll be meeting lots of new kids and it will be important that they understand that she can't have everything they can eat. I figured a children's book which explained what Coeliac's is, if it exists, could be helpful. Cue more internet research, only to find... very little! There were a few children's books about Coeliac's 'pending' on Amazon UK, and one or two books for older children on Amazon USA, but none looked like what I was looking for.

Ee-oh-sin-oh what?!
That's when Grace's parcel arrived. It contained a lovely book called 'Being Henry' by Mercedez Hinchcliff and illustrated by Peter Carnavas. It tells the story of a boy called Henry who has Eosinophilic oEsophagitis (what do you mean you've never heard of it!!). This condition means he is very limited in what he can eat, but he still likes to do lots of fun things with his friends. I was really impressed with the book. The language was simple and straight forward, but not patronising. It explained terms like 'endoscopy' and 'gastroenterologist' in way that certainly made sense to Alexandra. As we read it together for every question she had, the answer was on the next page.  (find the book on the Australian EoE website here: http://www.ausee.org/)
There was also some basic info for parents and carers, which was good.

'He's just like me.'

Perhaps the best thing about the book for me though was Alex's reaction to seeing in a book a child who also couldn't eat everything their friends ate ('and we're the same age mummy!!!' was shrieked in a high pitched voice on more than one occasion). There really needs to be something like this for children with Coeliac's (and many other illnesses and conditions in fairness, but one step at a time!!)

This is where my brain warps into overdrive and I start thinking about phone apps, cartoons, Dr Ranj talking about Coeliac's on Get Well Soon (a great CBeebies pre-school show for the un-initiated!!) ....  the possibilities are endless!

But back in the real world, does anyone know of any great books to help explain Coeliac's to kids?
(And now I'm off to email the BBC!)

Jen