The Lodger and Us

By Rory Today we went hunting nuns. It a past-time I hadn't expected to be partaking in when I woke up this morning but that's what was decided we would do so we did it. I should explain.  The Lodger loves witches. His favourite witch is the Grand High Witch.  While some years ago we worked through the logic that the Grand High Witch was not real we discussed actors.  Now obviously, his favourite actor is Angelica Huston.  She lives in America so we learnt everything about her.  We learnt she went to school in Ireland  In Kylemore Abbey.  We now visit Kylemore Abbey. Alot. The Lodger likes the house which was then the school.  He likes the bus to see the Connemara ponies and the Kune Kune pigs. I like the gardens.  We now go there to hunt nuns.  Unfortunately today we didn't catch any nuns but we did do some research. We investigated every picture of the nuns. We read all about the nuns. We looked in odd places in case a nun might be the...

We recently had a breach of security. Food security that is.  The Lodgers little cousin offered him some food and he accepted. How do I know this? He told me. The Lodger was watching some television and I went in to check on him.  'Mum, when is morning snack?' 'O, that's not for another hour or so Buddy.' 'Mum, Little Cousin gave me some food and I ate it.' I paused and rapidly tried to remember what we've been advised to do in this situation. Remain calm, don't punish. Get the facts. Breathe! Count to ten.  'Ok, and what was it that little cousin gave you?' 'O it was a bit of one of my crackers. '  In my mind.. PHEW! 'Ok, well next time Little Cousin offers you some food, will you ask me first if it's ok?' 'I knew it was ok for my tummy.' 'I know you did but next time will you check with me?' 'Ok. Am I in trouble?' 'No, not one bit. Just remember that with ...

I knew it was coming. I was prepared for the ocean of calmness we were in to come crashing down with the giant wave of a PWS moment.  Did I expect it that Monday? Not one bit. In all honesty, I’m not sure I ever expect it and my heart skips a beat when I get ‘the call’. Flight or fight mode kicks in. For me, it’s flight mode. I’ll take The Lodger home, wait until the PWS moment has passed, and we’ll talk things through quietly and calmly. Just once. We don’t dwell on it. A consequence is put in place and we move on.  We’re not used to meltdowns at home. So when they happen out in the world, I feel completely out of my depth.  I’m unpractised at this. I feel like a rookie. I try to remember everything I’ve read on how to handle a meltdown. Keep a calm voice tone, use positive language, don’t use too many words, don’t interrogate at the moment and keep breathing.  All easier said than done.  I read a book a while ago and I’ve rerea...

If CPAP was Ironman, The Lodger would be the winner! That's the quote of the day. I think we better get it printed on a t-shirt.  The Lodger, Champion of CPAP 2018 For those without knowledge of Ironman, it's an endurance event that the better half took part in last weekend. This year was the Ironman 70.3, a 1.9km swim, 90km cycle and a half marathon, all to be completed within a time limit. The Lodger and I were the Ironman Support Crew. In the Lodgers words, our job was to 'Cheer on Dad and see his medal at the end!'. Two boxes ticked and to quote The Lodger " Well done Dad!" Ironman Success We had many celebrations this summer. A New house, a family wedding, birthdays, triathlons, Ironman... but in the world of living with PWS, we have some PWS celebrations too. Obviously, being a champion of CPAP (For those without knowledge of CPAP click here ) is now close to the top of the list, possibly even knocking down the Ironman medal f...

It is one of the most heartbreaking things to see your child struggling.  The Lodger is sick.... again.  Since starting school, he seems to be catching every bug going. Last October in the midst of Storm Ophelia, The Lodger vomited for the first time.  For those not in the know, people with PWS rarely vomit. It can be a sign of serious illness.  He showed no sign of illness beforehand. In fact, we were out for a walk when it happened. His version of the story is very to the point... "We were walking and then I stopped, my mouth opened and the sick came out!" Straight afterwards, he asked for his snack but a frantic call to his PWS nurse, as I sought to find out how I'd know if his stomach was rupturing, emphasised the point to him that he'd have to wait a little while for his snack.  The Lodger has 100% respect for what his PWS Nurses and Doctors say. And as an aside, I didn't tell The Lodger that I thought his stomach was rupturing. I rem...

The Lodger makes me laugh, most days.  He has a really funny view of the world and an amazing way of just getting on with things.  Yesterday he came out school telling me it’s Pancake Tuesday tomorrow in an excited how brilliant sort of way.  He then stopped and said “What is Pancake Tuesday?” A quick explanation and a reassurance that he will have a pancake for his special tummy and all was good.... well when I say good, I mean content but with a 1000 question follow up, repeatedly, throughout the afternoon and evening...... and the following morning.... but that's just how it is with The Lodger.  "Mum will I have a pancake?" "Yum, I love pancakes!" "Mum , I'm going to love my pancake!" "Mum, does everyone know it's pancake Tuesday tomorrow?" "Mum, can you make pancakes?" "Mum, will you make the pancake after school tomorrow?" "Mum, pancakes are great." "Mum, when is P...

"Gabh mo leithsc é al... Gabh mo leithsc é al.... Gabh mo leithsc é al....." I drove along perplexed.  99.9% of the time I understand The Lodger but there's always that 0.1% that will leave me completely at a loss. I'll ask him questions to see if I can figure it out and most of the time it works but not this time.  Due to PWS, The Lodger's speech is delayed. He can say all the words in the world now but he misses the last syllable of most words and some sounds are still difficult for him but he's working on it. This means that to the untrained and unfocused ear, some words sound alike. Just the other day he announced at breakfast "Mum, I'll help you" and I said, "Fantastic, superstar!" . His father and Auntie looked on aghast until they realised he said help, not hate! And just like everything in the world of The Lodger, practise and patience will get him there. However this particular time, on the drive in ...

2018 is the year of adventure for our family.  That’s how we’re selling it to The Lodger. Pirates have adventures. Pirates can do no wrong in the world of the Lodger. Adventures are a good thing.  Over the last few months, he’s watched as   the estate agent visited to have a look around the house. Why Mum? He’s watched as the man in the van put up a big sign in the garden. Why Mum? He’s watched as we manically cleaned the house before viewings. Why Mum? He’s watched as we started packing things into boxes. Why Mum? He’s watched as the boxes started to fill up the rooms and his toys started to disappear. Why Mum? Today, the Lodger entered the house for the last time today to see all our belongings gone.  He walked into the sitting room.  “ The couch is gone. The Christmas tree is gone. “ He walked into the dining room.. “Everything is gone.” He walked into the kitchen... “ Mum, o no. The kitchen...