Skip to main content

The Great Bake off!

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.....

Comments

  1. 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

    ReplyDelete
    Replies
    1. Thanks 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.

      Delete

Post a Comment

Popular posts from this blog

The Lodger on tour!

The Lodger recently had his first school tour. The week leading up to the much-anticpated school tour started with an unexplained bout of challenging behaviour. 
The Lodger went back to school after his midterm break on Monday. He didn’t have the best day, a bit tired, a little bit oppositional, but we put it down to back to school feelings (and I kept my fingers crossed that he wasn't getting sick!)
Tuesday continued in the same breath! I was perplexed as he was fine at home, his usual happy Lodger self! I had a chat with his teacher and SNA after school and no light was shared but we decided maybe it was school tour excitement?? 
That was until, Tuesday evening and myself and the lodger were  having a little chat about things using my “I’m not trying to find out anything but really I am” strategy.... and for some unknown reason, he had gotten it into his head that he wouldn’t be having snack or lunch on his school tour.
Alarm bells rang, Take a breath! You think you have all bases c…

This is Real

This is real.
This feeling. 
This comfort.
This feeling of being surrounded by like-minded people.
A warming safety feeling.
No stress.
No panic.
No fears.
The joys of the Prader Willi family weekend.

A time when you release your child to the elements, safe in the knowledge that if anything was to happen the Prader Willi Police (PWP) are everywhere. Watching. Like undercover agents hiding in the shadows. But not actually in the shadows. 

We are a fun crew. A happy crew. A proud crew. We look out for each other with a nod and a smile. A simple nod of 'I've got this, fear not'. It's lovely to embrace these moments. The Lodger loves these weekends. If excitement wasn't sometimes such a chore it may well be exciting. A time when he can meet all his like-minded friends and enjoy the freedom although he's being watched by so many knowledgeable eyes. 

Another dad once told me; "We, the parents are the experts of this syndrome". And those words have never left me. 

As I …

Easter Eve

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. Does the Easter bunny know?' 'Mum…