It’s approximately 4421days since we got The Lodgers diagnosis of Prader Willi Syndrome. To save you doing the maths: twelve years and almost 2 months ago.
We’ve learned a lot in those twelve years- strategies to help distract him from food, tools to help transition from task to task, methods to help him calm down, strategies to keep us all going day to day….
We’ve met many experts in the field of PWS- from doctors, nurses, psychologists, researchers and a range of therapists from speech and language to occupational and physios.
We talk with many PWS families- both with children older and younger than our boy, The Lodger.
I’ve often been asked if we lock our kitchen. Up until yesterday the answer was ‘not yet.’
Today I sat with him as I was helping him put on his socks. It’s still a tricky thing for him to do- even with all the helpful tips from occupational therapists over the years. Somedays he’ll do it easily, other days he needs help. Today was a helping day.
“I think it might be a good idea if we lock the kitchen. What do you think?" I asked The Lodger
"How would I have my meals?" (Priorities!)
"It would be open when we’re eating, when I’m in the kitchen, when Dads there.. and we’ll close it when we go in the garden or I’m busy in another room - what do you think? " I said.
"I think that would be good. " said The Lodger
"Can you tell me why?" I asked.
"Because then I couldn’t walk in and see food and take it. Like yesterday. " said The Lodger
Yesterday he ate his brothers leftover food. He knew I knew and he admitted it when asked but it was a fail on my part, a lapse in food security.
Food security is making sure the environment is food secure- nothing left out, no access to food but it’s also more than that. It’s making sure The Lodger is confident in us to keep it food secure. It’s him knowing there is no access to food so there’s no point in trying to get some. There’s no hope, no chance, no disappointment. It’s his trust in us that he will get his food at his set times throughout the day- nothing more, nothing less- the exact amount of food he needs daily.
“Yes, we want to keep you safe and for you to be happy. If the kitchen is locked, you’ll know and you can tell your brain that there’s no point going to the kitchen, it’s locked and Mum/Dad will call me when the next meal is anyway. “ I told him.
And then a moment that will stay with me forever, his eyes teared up with happiness..
"I'm really happy about this." said The Lodger
"Can you tell me why you’re happy?" I asked.
"Because I can’t open a locked kitchen. Can you show me it locked. This is fantastic.
Mum do my other friends with PWS have their kitchens locked?" said a very happy Lodger.
"Yes some do!" I told him.
"Brilliant, that’s brilliant. A locked kitchen- this is brilliant." announced The Lodger.
For years we’ve wondered how we’d end up reaching this point, the locking of the kitchen. He’s been opportunistic over the years about taking food- a rare occurrence usually because we left something out but yesterday there was different energy about him- he had a buzz of ‘I got food’ that he hadn’t had before.
A spring in his step, a lightness… hard to explain but deep down I knew that we’d reached the locking of the kitchen.
I always thought it would be a sad feeling, the day we locked the kitchen but actually it gave me comfort knowing The Lodger is delighted with this decision. His face was full of joy when he saw the locked kitchen door. Every family is different, some people lock early, some when it’s needed and some never. Every family will do what’s best for them. It is their home.
It’s been a long time since we’ve written a blog post but we wanted to share this one because we’ve been thinking about the will we need to lock, when will we lock, should it be now for the last twelve years…
This morning I let my husband who was working know- "I’ve talked with The Lodger and the kitchen is locked now so I can cut the grass and not be thinking about the kitchen intruder. The Lodger is really happy about this locking kitchen news. I think it might be a life highlight for himself "
The husband's response: All I took from that is you are cutting the grass 🤣
It’s the small wins.
It’s the laugh we can share as parents to a boy with a really complex condition that controls our home life 24/7. If you don’t laugh, you’ll cry… There has been moments we’ve cried but we’ve had many a laugh at the sometimes bizarre moments PWS lands you in.
Humour will get you through 99.9% of things.
The grass is cut.
The kitchen is locked.
The Lodger is happy.
So are we.
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