The first year after The Lodgers diagnosis every week there seemed to be something new that we would have to get our heads around as parents of somebody with Prader-Willi Syndrome (PWS).
All we could see was FOOD!!
At birthdays there's cake.
At Halloween there's trick or treating.
At Christmas there's too much.
At weddings there's food.
At Easter there's chocolate.
At family and friends get togethers there's food.
Walking down the street, there's food!
And then there's the things we enjoyed doing, baking and cooking, eating out in restaurants, going for a coffee down in the village, a takeaway when we didn't feel like cooking, picnics up the mountains, a trip to the cinema with popcorn, an ice-cream on a sunny day, a hot chocolate on a wintery day... the list goes on!
In that first year, we enjoyed the last time we'd have our favourite cake on our birthday, a selection box at Christmas, an Easter egg, an ice-cream, a hot chocolate because we felt The Lodger wouldn't remember as he was too young and we gave ourselves a year to banish our bad habits surrounding food and introduce new traditions into holidays that weren't food related.
We're three years in now and I'm happy to say we still do most of the things on the list above, albeit with some PWS friendly alterations.
At birthdays there's cake and The Lodger can enjoy a yoghurt with some berries.
At Halloween there's fancy dress and trick or treating for crayons/small toys/books.
At Christmas there's new traditions such as the non food advent calendar.
At Easter, there's a treasure hunt for non food items!
At family and friend get togethers and celebrations, there's an incredible understanding from our nearest and dearest to not give The Lodger food without our permission.
We eat out with The Lodger. Perhaps too much, as he now serves food from his kitchen like a waiter.... See photo! The only problem we have encountered is kids portion sizes being too big! This has been quickly overcome as we serve The Lodger to his own bowl/plate that we've brought from home.
We do structure our daily routine around meal times. Meal times that are set at fuzzy times. I can't remember who advised us not to serve by the clock but we've stuck to that. At snack time, he'll happily enjoy his snack brought from home when we treat ourselves to a cappuccino in the village. We've had picnics up the mountains, in the zoo, in the forest park. It takes a little bit more organising but it works. The Lodger eats a healthy, no treats diet. Food purely plays a functional role, it's fuel.
We have found we can't rely on places to have The Lodgers approved snack/meal items, so we do bring a lot from home. Kids menus have a shocking lack of vegetables, so we often order an extra side of vegetables from the adults menu for him. It's all been successful, apart from the offers of ice-cream and lollipops, as nobody can resist The Lodgers charm and people love to reward with food but we politely refuse and if we have the time we educate.
We bake and we cook. We even spiralize now (Thanks Hemsley+Hemsley).
and The Lodger cooks in his play kitchen.
After a lot of research, we introduced a play kitchen to our home, a toy I thought as a parent of somebody with PWS we would never have in our home. I thought it would increase anxiety, that he'd become obsessive, that it would be the only toy he'd play with but that has not been the case at all. Often the toy sink is used as a bath, the oven is used as a cupboard that stores his books and a toy tool set. The Lodger will happily make callers to the house a cup of tea, served with a plate of vegetables and if you're lucky a banana. He'll tell Walter and the gang that the meal time is over and cups and plates will quickly be swapped with books for reading time. It's been a great addition.
The Lodger causes much entertainment when we do the food shop. We use every day activities to try to improve his vocabulary. As we put something into the trolley, we name it and if it's a food item, it's usually followed by a 'yumm'. People nearby have quite the giggle when it's a food item not normally enjoyed by a child such as onions and The Lodger is sitting in the trolley with a big smile on his face saying 'yummmm!".
We could have ditched traditions and outings but it's not possible. The world we live in loves food. It's everywhere. We've made changes that have worked for us and we are aware that further changes may need to be made as The Lodger gets older, but we are prepared and ready! We changed a lot, taking the focus off food and onto fun!!
PWS zero - THE LODGER Winning!!
All we could see was FOOD!!
At birthdays there's cake.
At Halloween there's trick or treating.
At Christmas there's too much.
At weddings there's food.
At Easter there's chocolate.
At family and friends get togethers there's food.
Walking down the street, there's food!
And then there's the things we enjoyed doing, baking and cooking, eating out in restaurants, going for a coffee down in the village, a takeaway when we didn't feel like cooking, picnics up the mountains, a trip to the cinema with popcorn, an ice-cream on a sunny day, a hot chocolate on a wintery day... the list goes on!
In that first year, we enjoyed the last time we'd have our favourite cake on our birthday, a selection box at Christmas, an Easter egg, an ice-cream, a hot chocolate because we felt The Lodger wouldn't remember as he was too young and we gave ourselves a year to banish our bad habits surrounding food and introduce new traditions into holidays that weren't food related.
 |
| Happy Halloween (The Lodger 3 years apart!) |
We're three years in now and I'm happy to say we still do most of the things on the list above, albeit with some PWS friendly alterations.
At birthdays there's cake and The Lodger can enjoy a yoghurt with some berries.
At Halloween there's fancy dress and trick or treating for crayons/small toys/books.
At Christmas there's new traditions such as the non food advent calendar.
At Easter, there's a treasure hunt for non food items!
At family and friend get togethers and celebrations, there's an incredible understanding from our nearest and dearest to not give The Lodger food without our permission.
We eat out with The Lodger. Perhaps too much, as he now serves food from his kitchen like a waiter.... See photo! The only problem we have encountered is kids portion sizes being too big! This has been quickly overcome as we serve The Lodger to his own bowl/plate that we've brought from home.
We do structure our daily routine around meal times. Meal times that are set at fuzzy times. I can't remember who advised us not to serve by the clock but we've stuck to that. At snack time, he'll happily enjoy his snack brought from home when we treat ourselves to a cappuccino in the village. We've had picnics up the mountains, in the zoo, in the forest park. It takes a little bit more organising but it works. The Lodger eats a healthy, no treats diet. Food purely plays a functional role, it's fuel.
 |
| Out with his Auntie for a snack |
 |
| The Wishing Chair in the Zoo |
We bake and we cook. We even spiralize now (Thanks Hemsley+Hemsley).
and The Lodger cooks in his play kitchen.
After a lot of research, we introduced a play kitchen to our home, a toy I thought as a parent of somebody with PWS we would never have in our home. I thought it would increase anxiety, that he'd become obsessive, that it would be the only toy he'd play with but that has not been the case at all. Often the toy sink is used as a bath, the oven is used as a cupboard that stores his books and a toy tool set. The Lodger will happily make callers to the house a cup of tea, served with a plate of vegetables and if you're lucky a banana. He'll tell Walter and the gang that the meal time is over and cups and plates will quickly be swapped with books for reading time. It's been a great addition.
The Lodger causes much entertainment when we do the food shop. We use every day activities to try to improve his vocabulary. As we put something into the trolley, we name it and if it's a food item, it's usually followed by a 'yumm'. People nearby have quite the giggle when it's a food item not normally enjoyed by a child such as onions and The Lodger is sitting in the trolley with a big smile on his face saying 'yummmm!".
We could have ditched traditions and outings but it's not possible. The world we live in loves food. It's everywhere. We've made changes that have worked for us and we are aware that further changes may need to be made as The Lodger gets older, but we are prepared and ready! We changed a lot, taking the focus off food and onto fun!!
PWS zero - THE LODGER Winning!!
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