The Lodger and Us

Prader-Willi Syndrome. It raises its head when you least expect it. Although in hindsight it was totally going to appear because we did everything we weren't supposed to.  The Lodger and Little Bro walk in the woods (not today!) I'll set the scene. It's a lovely autumnal Sunday. The sun is shining, it's not raining and it's not cold. A walk would be just the ticket before The Lodger has his Sunday movie. As you know, routine is important. Movies can't be missed.  We decided on our route- the route we call the castle route. You guessed incorrectly, it doesn't feature a castle but if you go off path and really crane your neck you might just glimpse one.  However when we got to the woods, I switched the route up. I don't know why. I just did. A moment of spontaneity. Anyway Hindsight. Lesson learned.  The new route meant a bit of climbing, so a lot of helping The Lodger and for The Lodger he wasn't able to continue his telling of the story he paused ...

Dear Angelica,  You don’t know me. You don’t know my son but we talk about you every day.  Every single day. Last Friday I felt initial relief when I passed your old school, Kylemore Abbey, that I didn’t have to talk about you.  We always talk about your school days there. We've often visited and every time we see it we talk about you, we talk about everything about you.  You see, my son has something called Prader Willi Syndrome. Amongst the host of symptoms are obsessive compulsive behaviours. One of his obsessions is you! Facetiming Angelica!  It all started with your role in The Witches (apologies Ms.Hathaway while we enjoyed your portrayal, nothing will top the one and only Angelica Huston). He decided The Grand High Witch was real. It was a true story. And sometimes the Grand High Witch would visit him. He would say that Grand High Witch was in school. He knew she was real. He was convinced. We were almost convinced. He has a wonderful imagination, he i...

The Lodger loves designing and gifting cards.  "Mum, I made a card for Z today!" "Fantastic. What did she say?" "She said you made my day and in my head I thought, that's a phrase because you can't make a day!" The Lodger is 8 During the summer,  The Lodger turned 8. I know, 8, can you believe it.  We put a call out for birthday cards and he had a fantastic time gathering them in the birthday treasure hunt.  One by one they were opened and he quizzed us on who everyone was.  "Mum, who's this person?" "O remember, the last PWSAI family weekend and at our table there was...."  "The last family weekend" said The Lodger The Lodgers face fell. I continued to explain "Yes, the last family weekend..." "Mum, why would you tell me this on my birthday! I can't believe it, the last family weekend" As I continued to explain and he was getting further and further upset, Rory was trying to explain to me. ...

It must be such a comforting experience to be able to send a child to school and not have to worry about how they’re getting on. I feel guilty just writing that sentence. Parenting a kid with special needs does that.. guilt.  It must be a comforting experience not having to keep your phone near you incase the school ring and hoping they won’t ring but when your phone does ring you’re relieved when it’s not the school but your heart skips a beat when it is.  Then you answer the phone with your heart racing and you’re told what’s happened... and as you end the call your eyes are tear-filled, as even though you said you’d be strong, it rarely happens. And then you feel guilty because whatever you’re feeling, you know your child is feeling worse.  It must be comforting to go to pick up and not have to be prepared that your kid had a hard day, that when you open the communication copy, you make a wish to read a positive account of the day and not a day with incide...

2563 days, give or take a leap year, is the amount of days since The Lodger was diagnosed with Prader Willi Syndrome.  It's been quiet on our blog (apologies) but it has definitely not been quiet in our lives. Update the blog has been on the to do list since May but sometimes things get in the way and sitting down to write a blog post does happen but it just doesn't get finished but we're back now!  The Lodger at his 7th Birthday party The Lodger recently turned seven years old. I can't believe it either. I always find during this time of year that I look back to those first couple of weeks of The Lodger and compare him to where he is now. Just the other day, he told me he was bored playing, the joys of summer holidays, so I asked him did he want a job. 'Yes I do' he replied. 'Ok, how about hoovering the house?' I asked him, fully expecting to hear a negative response but much to my surprise he said yes.  Did I ever think that tiny baby...

'Mum, I'm so sad for Jesus having a Last Supper! It is the saddest thing ever. It's horrible. Nobody should have a last supper!' 'Don't worry about the Last Supper' 'How can I not worry. Will I have a Last Supper?' 'No' 'How do you know?' 'It's something you don't need to even think about.' 'I am thinking about it' 'Well why don't you go for a nice sleep and dream of pirates' 'Which pirate?' 'Hook?' 'Ok, Hook is the best pirate. Did Hook have a last supper?' 'No!' 'Are you sure?' 'Yes!' 'I'm so sad about the last supper!' 'Ok.' 'Mum, how can there be Christmas if Jesus is dead?' 'I really think you should sleep now!' 'Mum, I'm not one bit happy about this!' 'I know you're not but how about, you can go for your sleep and forget about it all while you're sl...

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...

I'm about to write a sentence that I never thought I'd write without feeling a pang of sadness. The Lodger is extremely excited for Christmas (that's not the sentence, I'll let you know when I write it.) He, as usual, has it all planned out in his mind with the backup plan of "I know things can change.' The plan has a lot of detail but it's this line that makes me, of all things, smile. 'Mum, after we see what Santa has left. Oooo lego for me, hopefully. I'll go to the kitchen with Dad and help him make Christmas breakfast' There's the line.  Help him make Christmas breakfast. The Lodger is equally as excited for Santa as he is for Christmas breakfast.  Now, don't get me wrong, all breakfasts and meals are exciting in this house but when I've been talking to the Lodger about Christmas, his excitement for helping Dad make Christmas breakfast is joyful. I never thought I'd say that. This is The...