I think the only way to get to know The Lodger and all of his idiosyncrasies is to get to know The Lodger.
Prader Willi Syndrome (PWS) is complex, extremely complex.
Prader Willi Syndrome (PWS) is complex, extremely complex.
You think you have an idea of what it is and then WHAM BANG something comes at you unexpectedly. PWS is much more than food. Food is actually the easier thing to manage and inform people about, it's the quirks of behaviour that's the most challenging.
The food rules are easy to follow;
The Lodger can only eat what we give him.
He eats five times a day.
Nothing extra ever.
He must be supervised in food environments.
Food is never used as a reward or punishment.
Tick, Tick, Tick, Tick, Tick.
It's the challenges of behaviour associated with PWS that's the hard thing to teach.
Settling into big school was tough on The Lodger, tough on us and more than likely tough on his school team too. There were days were I frantically googled home schooling, I reached out to parents of older kids with PWS for tips on how they helped their kid settle into school, I cried more days in one month than I had since receiving his diagnosis and I held him as he sobbed and told me he didn't like school.
To the people who know The Lodger, he doesn't ever not like things (apart from asparagus) so it was a really heartbreaking time for us all to see him so unhappy in himself. We had everyone warned not to ask him about school, as he really didn't like talking about it but if he did mention it to be their usual Lodger cheerleaders and respond only with positivity.
This hit us hard, we were prepared for some challenging times but not to this extent.
I often think that if you had all the hours in a day to educate someone on PWS, it wouldn't be enough time.
The Lodger likes sameness. I heard a story from a professional in PWS land that if a person with PWS could live the same day over and over, like in Groundhog day, they'd be delighted.
This is The Lodger. He loves predictability but unfortunately for him, it is not possible.
Day to day routine changes. That's life.
However, thanks to all the parents who came before us and the professionals in PWS land, there is a toolkit of strategies to help make The Lodgers day of unpredictability easier for him.
The Lodger likes to know what is happening next. In a dream world of his, he'd love if we could break down every minute of his day but he's usually content knowing the next three things. Now, next, later.
You can't stop him mid-activity and ask him to do something new without a warning. He needs the transition time to process what's coming next. He might even need a countdown, especially if it's something that he might not want to do.
And unless you want one million questions about it, do not tell him about something that is happening tomorrow or in a few days/weeks/months.... he will not forget and he will ask about it obsessively until it arrives.
And, probably most importantly, you will not understand the importance of all of the above until you spend time with The Lodger without us.
This is what makes letting The Lodger be away from us difficult. It's easy to provide all the information, guidelines and strategies but until people get to know The Lodger and his needs there's a herculean time for The Lodger and the new people in his team.
And there's the key word, team.
Everyone needs to be on the same page; what happens at home can affect his school day and vice versa. The toolkit we use at home is the same as the toolkit at school. Everyone is singing from the same hymn sheet so to speak.
It's November now and I've been afraid to write this sentence for fear it all starts to fall apart but I truly do feel that The Lodger has settled into the routine of school (sigh of relief, shoulders down, relax, delete all the homeschooling information from the hard drive).
And the funny thing is after his school team, I mostly have to thank Pirates and one pirate in particular Captain James Hook.
The Lodgers love of pirates started after he saw an open air production of Peter Pan. I thought there would be too many distractions, that the picnic would take center stage and that the story would be too hard for him to follow. I couldn't have been more wrong. He loved it. Though it wasn't Peter Pan that The Lodger cheered for... it was Hook!
Ever since then, pirates and all things pirates have been top of The Lodgers favourite things. The Lodgers' SNAs (special needs assitant.. The Lodger has two, full time in school) even picked up on it and uses a pirate reward chart for school and the game of pirates is what yard time is all about according to The Lodger. Pirates help him unwind and have fun.
Of course, it was the Halloween costume of choice and I spent a panicked evening creating a hook.. as 'Mum, I'm Hook, I need a Hook!' was told to me in no uncertain terms. And Hook he became... Captain Hook, his hero!
|The Lodger as Captain Hook|
I will never forget the look on his face for Halloween dress up day in school, when all of the school staff came out to bring their class in dressed up as pirates. The Lodger was in awe. It was like the game played in the school yard came to life. He really must have felt that Peter Pan would definitely be defeated that day!
The Lodger and ourselves are incredibly fortunate to have a team of people that will do their utmost to help The Lodger in any way that they can. When The Lodger was having his really tough time, I reached out to one who I knew had a connection that could greatly benefit The Lodger. I emphasised not to worry if it wasn't possible but to our utmost delight, it was a successful mission. (You know who you are... THANK YOU!!)
Just the other day, The Lodger received a video from his hero, the one and only Captain Hook. I wish I had recorded his reaction as he watched the video again, and again, and again and again....
"I'm so happy Mum!"
And he is. Happy at home, happy at school and absolutely delighted that his hero, Captain Hook knows he's doing great work in school.
PWS continues to throw all it has at our boy. It magnifies situations of stress. It makes new things even tougher. It requires bags loads of energy to defeat each day but The Lodger has in the last few months shown us his strength, his willingness to try again and his courage to face a new day, everyday.
Keep going, buddy! As always, we're incredibly proud of you x
|First time Trick or Treating!|