The Lodger and Us

The Lodger loves walking. Which for a person with PWS is great. Accidental exercise as I like to call it. Walking in our house is often a treat. When the Lodger has a good day in school his treat is a walk to see the cows. If the day isn't so good we walk a different way punishing him with hedgerows and trees. That'll teach him. We use incentives a lot with the Lodger to reward his good behaviour and keep him focused on little goals day by day. Luckily the excitement of a visit to see the cows keeps him on the straight and narrow most school days. The only problem now is there are plenty of cows in the fields around the house so he doesn't have to go far to watch his favourite animals.   The Lodger loves walking to school, walking to see the cows, and also walking in the forest opposite our house. The Galway forest as he calls. In his world literally the only forest in Galway. One of only two in Ireland. The other one is in Kildare if you're wondering. We often g...

Since deciding (or having it decided for me) to change my area of life study to everything relating to Prader-Willi Syndrome a few years ago I kind of wonder what I used to fill my brain with. Thanks to The Lodger, one of our new very mild super powers (and there are a few) as credited to the D.O.D. (David O'Doherty) is our ability to circumnavigate hospitals.  We don't need to follow signs or ask at the desk - you can almost sense where you need to go. Obviously this super power is totally magic and nothing to do with the over familiarisation of hospital and health facilities that the world of The Lodger has brought us to. Pre-investing in The Lodger, it's not that I ever thought about exposing my super power, it's just that I never thought about it. Or that it was even there. Possibly ignorant to a whole world within our world that we just managed to avoid. But now we're in and it'll take more than a blindfold to keep me out of an endocr...

The Lodger has started his journey into the land of education! Unfortunately due to cut backs, The Lodger was unable to receive an assistant. We were very fortunate to find a preschool that would take him to see how he would get on. The first day of school was the most nerve wrecking day and not just for me. The Lodgers support network were all equally nervous as he took the big step into education.  I reluctantly dropped him over to preschool, helped him hang up his jacket and put his lunch bag away. I helped him walk to the table, sat him on the chair, fought back the tears and told him to have a great day. Before leaving, I emphasised to the teachers, that I was 5 minutes away, to ring me at any stage and then I left. I got home and spent the next 2 hours 45 minutes anxiously waiting for a call. I won't lie... I didn't clean the house. I didn't read a book. I didn't watch tv. I didn't do anything. I just sat on the couch, nervously waiting, c...

The Lodger started preschool in the last few weeks. We found a preschool that have accepted him without a preschool assistant, a battle we continue to fight, trident in hand we fight on. Anyway all he needed was a thermos lunch bag. So simple and yet these were the thoughts going through my head a few days before he set off. I discuss with the Lodger where we should shop for his lunch bag and because it's a Wednesday and because it's just after lunch he's in a YES mood so my decisions are all agreeable. This is a good day. We arrive in the shop and I survey the options. He loves Frozen but I don't so I veto that. He understands. Daddies know best. He loves monsters too but it's all monsters crossed with lunches, so monsters eating and I'm not sure about how Pradar-Willi friendly that is. Then there's the happy strawberry bag with the lovely strawberry zips but I wonder if I buy that one will his teachers believe how serious PWS is if we're so c...

The Lodger has had a summer filled of Champagne Moments. ( Thank you fellow PWS Mum for this phrase !) The IKEA Blue Chair This time last year, The Lodger started to weight bear. Since then, there has been daily physiotherapy and the motivation of Walter and the rest of The Muppets, the use of clever strategies to increase his confidence in using his legs rather  than crawling, weekly hydrotherapy to improve his strength, the removal and relocation of furniture to encourage him to take an extra step and a lot of praise and encouragement from us and family and friends to motivate him to walk an extra few steps everyday.  We were over the moon, thrilled to bits when The Lodger took his first solo steps in June  and with a lot of practice all summer, he can now walk independently! We have the Ikea blue chair to thank, as it acted like a walker he could push around the house. It scratched the floors but each scratch is a step taken, a reminder of the trem...

The Lodger was diagnosed with Prader-Willi Syndrome when he was just two weeks old and like the majority of other parents with children with PWS, it was something we knew very little about.  We were warned to stay away from google, as a lot of the information is outdated but in a world that is reliant on the internet, we didn't last long. I read everything, the good and the bad. Luckily there are some fantastic PWS organisations around the world to get the right information from. We've had and continue to have great support from PWSAI  in Ireland and very easily accessible information from other PWS associations in the UK, USA, New Zealand and Canada. PWS is rare, so the worldwide community makes up an important part of our lives now. Facebook groups are great for advice from parents worldwide.  The Lodgers's interest in food is increasing. Other parents of non-PWS kids will often tell me their two year olds are the same but I don'...

The Lodger entered the latest phase of his war on PWS recently. The dreaded CPAP (continuous positive airway pressure) machine. A breathing mask that supplies a constant and steady air pressure into his airways through the night to counteract the sleep apno ea.  Just at the same time he learnt his new favourite word...No.  No No No No No No No No. Everything is No. Well not everything, dinner is becoming increasingly Yes but that's another story. But generally The Lodger loves using the word No. And we don't mind because it's all friendly family banter. If we followed his replies we'd never go anywhere, we'd never come home from where we didn't go, he'd never sleep, never play, never sit, never stand, never do anything. Just No. In fact he can be very stubborn on the fact that he definitely doesn't want to do either of two very opposite things. But I haven't explained to him the error of his ways there yet. Sometimes he says No to the thing...