The Lodger and Us

We recently had a breach of security. Food security that is.  The Lodgers little cousin offered him some food and he accepted. How do I know this? He told me. The Lodger was watching some television and I went in to check on him.  'Mum, when is morning snack?' 'O, that's not for another hour or so Buddy.' 'Mum, Little Cousin gave me some food and I ate it.' I paused and rapidly tried to remember what we've been advised to do in this situation. Remain calm, don't punish. Get the facts. Breathe! Count to ten.  'Ok, and what was it that little cousin gave you?' 'O it was a bit of one of my crackers. '  In my mind.. PHEW! 'Ok, well next time Little Cousin offers you some food, will you ask me first if it's ok?' 'I knew it was ok for my tummy.' 'I know you did but next time will you check with me?' 'Ok. Am I in trouble?' 'No, not one bit. Just remember that with ...

It’s the night before Easter and all through the house, not a creature is stirring.... Oops wrong event!  It’s Easter Eve and the Lodger has been busy over the last few days questioning all things Easter Bunny, most questions relating to whether the Easter Bunny knows about his special tummy. 'Mum have you told the Easter Bunny about my special tummy?' 'Mum, how did you tell him?' 'Mum, was it a letter? I didn't see you post it." 'Mum, what about you? You don't have a special tummy. Will you get a chocolate egg?' 'Mum, what is a chocolate egg?' 'Mum, I think the Easter Bunny DEFINITELY knows about my special tummy!' 'Mum, I think I really like Easter. Mum, the Easter Bunny will bring me special things." 'Mum, does he know I live here now and not in the old house.' 'Mum, what about our new house. Will he know where that is?' 'Mum, we don't live in the new house yet. D...

It is one of the most heartbreaking things to see your child struggling.  The Lodger is sick.... again.  Since starting school, he seems to be catching every bug going. Last October in the midst of Storm Ophelia, The Lodger vomited for the first time.  For those not in the know, people with PWS rarely vomit. It can be a sign of serious illness.  He showed no sign of illness beforehand. In fact, we were out for a walk when it happened. His version of the story is very to the point... "We were walking and then I stopped, my mouth opened and the sick came out!" Straight afterwards, he asked for his snack but a frantic call to his PWS nurse, as I sought to find out how I'd know if his stomach was rupturing, emphasised the point to him that he'd have to wait a little while for his snack.  The Lodger has 100% respect for what his PWS Nurses and Doctors say. And as an aside, I didn't tell The Lodger that I thought his stomach was rupturing. I rem...

The Lodger makes me laugh, most days.  He has a really funny view of the world and an amazing way of just getting on with things.  Yesterday he came out school telling me it’s Pancake Tuesday tomorrow in an excited how brilliant sort of way.  He then stopped and said “What is Pancake Tuesday?” A quick explanation and a reassurance that he will have a pancake for his special tummy and all was good.... well when I say good, I mean content but with a 1000 question follow up, repeatedly, throughout the afternoon and evening...... and the following morning.... but that's just how it is with The Lodger.  "Mum will I have a pancake?" "Yum, I love pancakes!" "Mum , I'm going to love my pancake!" "Mum, does everyone know it's pancake Tuesday tomorrow?" "Mum, can you make pancakes?" "Mum, will you make the pancake after school tomorrow?" "Mum, pancakes are great." "Mum, when is P...

If you've spent any time in The Lodgers company, you'll know he is a fan of telling stories.  I've just spent the last thirty minutes listening to the story of the summer holiday retold by The Lodger. It's a popular subject of his and due to his superpower of incredible memory recall, no detail is spared. The Lodger remembers the smallest details that would well be forgotten by most. It's a family tradition at this stage, that we cut it fine with ferry departure times. We were actually well on target for being early for once except the cafe we chose for lunch moved at snail pace when it came to service.  Ultimately this led to The Lodgers soup being transferred to a takeaway coffee cup, with the promise he could have it onboard the ferry.  The convoy packed up, loaded the humans and set off to board the ferry with great excitement. Somehow The Lodger and cousins soup got mixed up amongst all the commotion and unbeknownst to us, we left the car deck ...

We have always loved eating out! We also happen to live in a town that loves food. How do I know this? Well it's a town that has so many recommended restaurants that it is often difficult to get a table at popular times!   Last night we went out as a trio (The Lodger and Us!). When we first received the diagnosis of PWS, eating out was one of the things we thought we'd never get to do as a family. We couldn't have been more wrong. The Lodger not only loves eating out, he's brilliantly behaved at eating out and due to his super power of always finishing every meal, he gets great praise from all the waiting staff. To quote him "Ah thank you! The dinner was delicious. Yum Yum Yum!" Granted it does take some pre planning to ensure there is something that The Lodger can eat. The kids menu generally doesn't suit his diet.  We bring his own plate from home. His small portion of food would look minuscule on a big restaurant plate and as the eye c...

The Lodger is now very aware that people eat different things to him. At meal times he'll point out if we are having the same meal and mention any differences between them. He'll show off his counting skills too... 'one piece of bread', 'two tomatoes', 'three different foods on my plate'.  He's also very aware that there are food types he can't eat.  We've chosen to keep The Lodger on a healthy, balanced, nutritionally dense diet. After too many hours.. months, probably years stressing about different types of diets - low carb, high fat, high protein, ketogenic, the list goes on... We've settled on a nutritionally dense healthy diet for The Lodger.  Every few months we'll fill in a food diary to get it analysed by his dietitian to make sure he's getting everything he needs. There's probably not many people who use My Fitness Pal for their 4 year old but it's a very useful tool to plug in his meals and get immediate fe...

Firstly I can't say I am in any way qualified to discuss this subject. There are no letters before or in fact after my name. I went to college but didn't learn anything about stress, anxiety or Prader Willi Syndrome. And I don't get paid large quantities of money to discuss these topics. But what I do have are a very particular set of skills, skills I have acquired over a 4 year period. Skills that make me a nightmare for people like you.  The last part is factually not correct but if it's good enough for Liam Neeson it's good enough for me. My skills are a little different and totally self taught through nothing other that necessity. The necessity to deal with the wonderful symptom of anxiety in a 4 year old with Prader Willi Syndrome.  Again I'm only 4 years and 7 months into my journey of involvement with Prader Willi Syndrome so my experiences and thoughts are just mine and not the silver bullet of PWS. If it was, maybe more people would rea...

It's been quiet in the world of The Lodger of late and by quiet I mean so freaking busy there's no time to write about the trials and tribulations of Prader-Willi Syndrome.  I guess it's also easier to write when times are good and when there's time for celebration but I guess if we're to be honest about Prader-Willi Syndrome recently there’s been a few more bad days.  If it's not another disappointing hospital trip where your answers still can't be answered because let's face it they don't know all the answers, it's another hoop to jump through trying to get The Lodger better services in pre school and trying to plan for primary school next year.  And then there's The Lodgers ongoing development and attempts to understand the world around him.  The Lodger is four and the behavioural challenges of PWS are showing through. Possibly due to lack of understanding and still some difficulty  with communication the Lodger is testing...

Once we heard that The Lodger had Prader Willi Syndrome, we very quickly and drastically changed our lifestyle and one of the hobbies I once enjoyed, I felt I could never do again. I loved baking. I was a big fan of cupcake design and when I was pregnant I looked forward to baking for future birthday parties for my child. On hearing The Lodger has Prader-Willi Syndrome, I packed up all the baking books and put them away. How could I bake, when my little boy would never get to enjoy the creations or lick the bowl which myself and my sisters enjoyed so much as we grew up.  I was very hesitant about introducing baking to The Lodger. I was thinking about it all morning before I made the final decision, weighing up the good and bad. Would it be a disaster? Would it increase his anxiety? Would he able to resist having a taste? When he's older, will it cause stress?  I got everything ready, the bowls, the aprons, the weighing scales, the ingredients and the spoons......

Today started like most other Saturdays, we had our breakfast and we discussed the plan for the day. The Lodger likes to know what is happening but in the same breath he doesn't like when plans change. Through lessons learned over the past few months, we only tell The Lodger plans for the day that are definitely happening.  But today, today was a Saturday. The to-do list for the morning had been made. We put on our jackets, T he Lodger carried the shopping bags and I picked up the car seat. I went to open the front door and realised my keys were missing!  After a little bit of panic that The Lodger was oblivious to, I found the spare car key and we used the back door to leave the house. This was met with many questions about the status of the front door but we moved past it and The Lodger helped carry the bags, as we made our way to the car. To my horror, the key I thought was the spare key was not for this car. I assessed the situation....