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... and I went to talk to The Lodger. If something new is going to happen, if we are going to change activity or go somewhere, The Lodger likes to know in advance. It makes transitions from task to task much easier. We set the timer to 5 minutes to activity change and he's content to do the next thing on the list.
I told him I was going to bake and would he like to join me. Yes, was the resounding answer.
It couldn't have gone better. We made Banana & Porridge bread together. He helped mash the bananas, helped weigh out the oats and had a great time shaking the cinnamon into the mixture, he loved stirring in the coconut oil and helping me scrap it all into the baking tin.
I popped it in the oven and he went back to play. It was a success.
The Lodger is almost four now and every morning, he helps to prepare his own breakfast. He carries the milk from the fridge to the counter, he gently pours his milk and he carefully mashes his wheatabix. He often helps to prepare other meals too, unless he's too busy playing.
I won't lie, I watch him like a hawk but so far, so good.
When we got the diagnosis of PWS, we automatically started thinking of all the things The Lodger wouldn't be able to do.... can't do this, won't be able to do that.. or that... or that... but in the last almost four years, he's shown us what he can do...
Eat out in restaurants/cafes - Yes!
Go to birthday parties & family celebrations - Yes!
Learn to bake,cook and prepare food - Yes!
With a few tweaks, he can join in and participate.
The Lodger has taught us that anything really is possible.....
The Lodger is almost four now and every morning, he helps to prepare his own breakfast. He carries the milk from the fridge to the counter, he gently pours his milk and he carefully mashes his wheatabix. He often helps to prepare other meals too, unless he's too busy playing.
When we got the diagnosis of PWS, we automatically started thinking of all the things The Lodger wouldn't be able to do.... can't do this, won't be able to do that.. or that... or that... but in the last almost four years, he's shown us what he can do...
Eat out in restaurants/cafes - Yes!
Go to birthday parties & family celebrations - Yes!
Learn to bake,cook and prepare food - Yes!
With a few tweaks, he can join in and participate.
The Lodger has taught us that anything really is possible.....
I know that this post is a little old so you may be surprised for a comment so many months on but I've just had a lovely little boy who has also been diagnosed with pws. This post has helped me in so many ways. We've been looking at all the different ways we can help him but also thinking about the things that we probably won't be able to do, seeing that you're baling with him (albeit health alternatives) and that you're eating out etc is such a relief to us. I know that everyone diagnosed has different symptoms and severities but this gives me so much hope! Thank you! I've subscribed to your blog, I've actually just started my own. Mainly so that on the bad days/weeks I have bits to look back at to remind me where we started and how far we've managed to come xx
ReplyDeleteThanks for the comment Becky. Our blog started as a way to keep family and friends up to date but glad it's reached you and hope it helps. Great to hear you're writing your own too. There'll be more highs than lows. The Lodger always amazes us in his determination to achieve all his goals! A few adjustments to the "regular" way to do things but we still do everything we want to do as a family.
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