Tag Archives: cooking

Brave New World

If you’re on any social media platform, be it Facebook, Instagram or Twitter, the chances are that your timeline will have been flooded this week with the ever popular first day photos like this one, on what an old friend humourously terms “National Stand in Front of your Door Day”. The start of every new school year always brings a list of tasks that need to be completed, which includes for us more than just name-labelling the new school uniform and buying huge amounts of school stationery that will potentially have disappeared by the end of the first week, but also making sure that we’ve dotted the “i”s and crossed every single “t” relating to the health needs of both children.

This year felt like even more of a challenge as M moves up into the same secondary school as his big sister and we find ourselves dealing with the reality of different teachers for every subject, a year group that’s bigger than the whole of his junior school and the need to educate the school in the world of M. The good news is that having reached the end of the first week, things have not gone horribly wrong and on the whole, it has all been a huge success. Every evening, M and I have looked through his timetable for the next day to discuss what he might need to do to make sure all his needs are being met as they need to be. I was as delighted as he was to discover that his educational needs have been noted on the tutor group register and so his teachers are aware that he needs extra support in relation to his Dyslexia and Dyspraxia. We still need to iron out the finer details of note-taking in class and how he prepares his homework for each lesson, but our unexpected find of yellow-tinted sunglasses whilst on our summer holiday have been an added bonus to helping him read the worksheets he’s given.

Disappointingly, though not altogether surprisingly, the level of awareness about his EGID and food restrictions has not been what we hoped it might be, but whilst my hopes were high, my expectations were truthfully quite low and we knew there would be work to be done in this area. He went to the Student Services with his medicines on the first day and by day 2 was confident enough to ask for a set of yellow cards, which gives him permission to leave class early to take them, jump to the front of the queue with 2 friends when it comes to lunchtime and go to the toilet whenever he needs to without having to wait and ask permission. Our biggest challenge was the one we feared it might be, that of the Food and Textiles classes that he will be taking this year. His cookery teacher was not aware of his dietary restrictions or just how important avoiding the cross-contamination risk is for M and so I’m waiting to talk to her after school on Friday to discuss just how we go forward with the lessons**. We are all keen for him to take these lessons and learn to cook, but Mike and I are very aware of the need to protect his fragile mental health and so will be working hard to make sure the cookery lessons don’t become a challenge too far for him.

As for G, my big girlie quietly and confidently started in Year 9 and is looking forward to the year ahead. She’s a little anxious already about making her GCSE choices later this year, but we have been spending time reassuring her that she won’t have to make those decisions on her own and that we will help and support her every step of the way, as will the school and her teachers. This year is a little different for G as they are now splitting a number of her classes into sets and her hard work over the last couple of years has stood her in good stead as she has been placed in the top 2 sets for almost all subjects.

It really is a step into a brave new world for the whole family and I can’t wait to see what the year ahead will bring for us all.

** So that conversation has happened today and I’m delighted to say was a really positive one. Mrs J has agreed that M can use ingredients and adapted recipes that are safe for him wherever possible and will work at his own station to help reduce the cross-contamination risks for him. She is as keen as we are to make the lessons a positive experience for him and will be regularly touching base with me to make sure we’re all getting it right.

The missing element

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With only the occasional exception of the odd batch of chicken liver pâté, M has been consuming more than his fair share of dry rice cakes on a daily basis over the last 14 months. What started as a necessity because of his limited diet and the lack of finding a delicious and safe spread to use, continued because, however I looked at it, I couldn’t see a way to create that missing spreadable element. The recent discovery of a great rice cream which could be spread a little like butter has meant that things seem to finally be on the up as it not only provides a tasty addition to an otherwise inarguably bland food, but also adds some much-needed extra calories each day. Arsenic-levels-in-rice-crackers-and-Rice-Krispies_strict_xxl Even better, that upward trend continued this past weekend when, as Mike prepared some toast with lemon curd for my breakfast, my mind was drawn back a few summers to when I realised that I could make dairy- and soya-free lemon curd for the children to enjoy and I wondered whether I could take that original recipe a step further and produce one that would achieve M-friendly status.

To my delight, this looked to be one of the easiest recipe adaptations I’ve had to tackle in the last 15 months as there were only 3 ingredients to be replaced and all could be done in the simplest of fashions. My coconut milk became rice cream, the cornflour mix replaced by rice flour and the safe margarine could be substituted by coconut oil. Refusing to tell either M or G what I was planning, I sent them out on an errand to buy some more lemon juice from our corner shop and achieved a much-needed break from the near constant bickering we’d been subjected to so far that day. It was a beautifully sunny spring afternoon and I knew they’d benefit, not just from the feeling they were doing something useful for Mummy, but also from some sun, fresh air and a stretch of their legs. M was somewhat confused by my request as he was insistent I had more than enough lemon juice in the fridge already, but he was readily swayed by my demand for more and the promise of a special treat if it all worked out.

The process of making the lemon curd was actually a lot easier and quicker than I remembered. I have vague memories of making “proper” lemon and raspberry curd when G was in Reception as an end of year gift for her class teachers and remember standing at the hob, stirring the hot mixture until ~~my arm~~ both arms felt tired. I’m not sure why this recipe and method don’t take so long, but I’m definitely grateful for anything that takes less than 30 minutes to whip up these days. To my surprise, despite their initial interest, G and M soon became distracted by other activities and so I was able to finish the preparation and get the 2 jars into the fridge without them noticing. The distraction of a dairy- and soya-free chocolate fondue for pudding – my desperate attempt to use up as much of the leftover Easter chocolate as possible as sadly it’s not been a success for M – proved invaluable and Mike and I were able to hold off the big reveal until it became Sunday teatime. IMG_0277[1] The flavour is very sharp and not overly sweet and M has loved every mouthful, demanding it on a near daily basis for either lunch or a bedtime snack. G says she enjoys it too, though I’m certain she won’t be asking for it on anything like as regular a basis as her brother. Most importantly, it provides a break from the dry mouthfuls of rice cakes that M has become accustomed to and that, in my world, is absolutely priceless.

Yet another chicken recipe!

A tri-umph of rice-themed goodies!

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Recently I’ve been spending my time baking and cooking up a whirlwind as the days ahead have been looking busy. With a day for G and M at the holiday club run at Mike’s work, an appointment with M’s consultant and dietitian at GOSH to review his progress 4 months post-tube and a planned short stay in London to see the sights and to dip our toes into the world of being away from home with NG-tube in tow, a plethora of safe snacks and treats for M were much in need. I prepared rice pudding, rice-flour sugar cookies and rice krispie cakes to satisfy the appetite of my youngest and to reassure myself that we would have some things with us to feed him whilst the rest of us enjoyed some much-missed meals out. I also used the opportunity whilst trialling banana to add some to the mix and made some banana sugar cookies too.

The recipes can be found in the everything-free recipes section and are so easy to follow that next time round, my plan is to be sitting back with a cup of tea, whilst G and M get on with the task of creating their own delicious masterpieces!

Who knew you could make so much from rice, sugar, rice milk and canola oil? Any other suggestions for simple recipes will be very gratefully received!

7 years to diagnosis

Searching for an answer