The Lodger and Us

It's been quiet in the world of The Lodger of late and by quiet I mean so freaking busy there's no time to write about the trials and tribulations of Prader-Willi Syndrome.  I guess it's also easier to write when times are good and when there's time for celebration but I guess if we're to be honest about Prader-Willi Syndrome recently there’s been a few more bad days.  If it's not another disappointing hospital trip where your answers still can't be answered because let's face it they don't know all the answers, it's another hoop to jump through trying to get The Lodger better services in pre school and trying to plan for primary school next year.  And then there's The Lodgers ongoing development and attempts to understand the world around him.  The Lodger is four and the behavioural challenges of PWS are showing through. Possibly due to lack of understanding and still some difficulty  with communication the Lodger is testing...

At this stage we probably all feel that we've gotten a pretty decent grasp of the language we speak every day. It's taken time to develop from when we were toddlers, into the school years, teenage years and into adulthood where, if we are to be honest we're still learning. Admitting it may be another story. Like some people still don't know what a tracker mortgage is?? Anyway this is a throwback to those wonderful moments where grammar really doesn't matter and the basic concepts of language will do just fine. I'm sure all children experience the same development possibly at a faster rate but I can only speak for one and we're enjoying tipping through the minefield of the simple English language. The Lodger is just gone four and is learning to speak. He's finally decided it's time. We are glad he's finally made the decision. The sounds started a long time ago, followed more recently by the one syllable words and now we're deep in...

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......

We were asked to guest blog for IPWSO (International Prader Willi Syndrome Organisation) on the use of signing as a communication tool. Have a read here...  here

Today started like most other Saturdays, we had our breakfast and we discussed the plan for the day. The Lodger likes to know what is happening but in the same breath he doesn't like when plans change. Through lessons learned over the past few months, we only tell The Lodger plans for the day that are definitely happening.  But today, today was a Saturday. The to-do list for the morning had been made. We put on our jackets, T he Lodger carried the shopping bags and I picked up the car seat. I went to open the front door and realised my keys were missing!  After a little bit of panic that The Lodger was oblivious to, I found the spare car key and we used the back door to leave the house. This was met with many questions about the status of the front door but we moved past it and The Lodger helped carry the bags, as we made our way to the car. To my horror, the key I thought was the spare key was not for this car. I assessed the situation....

The Lodger has many people in his life who love him, care for him and support him. We are very fortunate to have a wonderful network of family and friends who without question got on board with our PWS rulebook. The Lodger has a team of superheroes who work with him in areas such as speech and language, occupational therapy, physiotherapy and not forgetting his teachers and preschool assistant in Playschool.  The Lodger at his most recent checkup was in the recommended zones for height and weight and his blood work came back perfect. This was great news to hear, as we are constantly stressing over 'Is he eating too much?', 'Is he eating enough?', 'Is he getting enough vitamins and nutrients?', 'Is he healthy?' We, as parents, are constantly thinking about his meals and snacks, planning ahead for changes in routine and ensuring that he is eating a very healthy diet. The Lodger is never given extra, never given food from someones else plat...

It's so much more than eating. It's impossible to imagine the feeling towards food that a person with Prader-Willi Syndrome experiences.  But it's a very real thing. It's more than just hunger. It's a feeling that takes over the whole mind. Add the extra complications of stress, anxiety and uncertainty around the next meal and that's when you're getting close to imagining that feeling. The food obsession with PWS is so much more than eating. But as with all symptoms in Prader-Willi Syndrome this can be mild, severe or somewhere is the middle of the spectrum.  It's a relationship with food. It seems to be a consistently spinning wheel in the minds of someone with PWS where food is a consistent thought. The Lodger is becoming more and more obsessed with food everyday. But not in the way you'd think or we expected. His obsessions are far beyond his daily eating schedule.  A lot of his play now resolves around food. He makes te...