The Lodger and Us

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...

If you've spent any time in The Lodgers company, you'll know he is a fan of telling stories.  I've just spent the last thirty minutes listening to the story of the summer holiday retold by The Lodger. It's a popular subject of his and due to his superpower of incredible memory recall, no detail is spared. The Lodger remembers the smallest details that would well be forgotten by most. It's a family tradition at this stage, that we cut it fine with ferry departure times. We were actually well on target for being early for once except the cafe we chose for lunch moved at snail pace when it came to service.  Ultimately this led to The Lodgers soup being transferred to a takeaway coffee cup, with the promise he could have it onboard the ferry.  The convoy packed up, loaded the humans and set off to board the ferry with great excitement. Somehow The Lodger and cousins soup got mixed up amongst all the commotion and unbeknownst to us, we left the car deck ...

The Lodger loves telling stories and his favourite story to tell is about his day. It's a joy to watch his face light up as he starts each new day telling us about his day yesterday.  Reading Books at the Recent Routine Hospital Stay It's also a stark reminder of the hard work he's put in over the last four and half years. We've gone from speaking with our hands using Lamh (Simple Irish Signs), using cards to prompt words(PECS), to using a handful of words and cued articulation (to show him where the sounds come from), to finally to talking in full sentences.  My job as an interpreter is fading fast and I'm delighted for him. The fact he can now communicate with mostly everyone has made his day to day life easier.  Recently more and more strangers are clearly understanding what he's talking about and he'll happily chat away with them FOREVER! It does mean we are steadily entering a new phase of PWS.... P erseveration!    The Lodger gets 'stu...

Sometimes you enjoy spending time with your child. I'd even go as far as saying most of the time it's enjoyable. But then there are those other times... It's 5am. I know because I've checked the phone, undetected, hopefully, as The Silent Shuffle Monster makes his way through the darkness. The Lodger is awake.  I always check the time in trying to understand this next crazy symptom of Prader-Willi Syndrome.  The dreaded early waking.  I not sure on the specific reasons or causes for this. Possibly hunger or a low blood sugar level or possibly anxiety relating to the ' Will they remember to give me breakfast?' A consistent worry in the world of PWS. Ive captured this moment before, the waking and slow approach, It happens like this. The Lodger wakes, reaches out turns off his sleep apnoea machine and carefully removes his mask. He then slips carefully from the bed making sure not to wake  Walter  and pulling the covers back up on him. Imp...

Firstly I can't say I am in any way qualified to discuss this subject. There are no letters before or in fact after my name. I went to college but didn't learn anything about stress, anxiety or Prader Willi Syndrome. And I don't get paid large quantities of money to discuss these topics. But what I do have are a very particular set of skills, skills I have acquired over a 4 year period. Skills that make me a nightmare for people like you.  The last part is factually not correct but if it's good enough for Liam Neeson it's good enough for me. My skills are a little different and totally self taught through nothing other that necessity. The necessity to deal with the wonderful symptom of anxiety in a 4 year old with Prader Willi Syndrome.  Again I'm only 4 years and 7 months into my journey of involvement with Prader Willi Syndrome so my experiences and thoughts are just mine and not the silver bullet of PWS. If it was, maybe more people would rea...

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...

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....

We're like the Who's in Whoville when it comes to Christmas. We love it.  I remember when I was pregnant with The Lodger dreaming of future Christmases, that would be filled with wonder and magic... and carrying on Christmas traditions my own parents started- The advent calendar, decorating the Christmas Tree, Santa leaving a trail of chocolate money all the way around the house, the Christmas stocking at the end of the bed, the excitement I shared with my sisters on Christmas morning, the gathering of family, the annual chocolate Santa and a selection box, the Christmas morning breakfast, mince pies and chocolate kimberley biscuits in the run up to the main day, Christmas dinner with the delicious smells of spiced beef and red cabbage wafting around the house, the tower of chocolate profiteroles covered in mars bar sauce, the Christmas Day games, the Christmas dinner leftovers to be enjoyed on Stephen's Day, the gathering of friends... The last three Christmases with...

We walk out of the shop. I ask the Lodger for his hand but he refuses. I explain, as you do, the dangers of traffic and that he must hold Mummy or Daddy's hand when near the road. He's frustrated and tries to explain to me what's wrong. But I just don't get it.  Then the Mummy steps in to understand the problem.  The Lodger explains using his range of words and signs that obviously he cannot hold Daddy's hand as he is carrying a pig. Yes, a rather large invisible pig. So the situation is resolved by Mummy taking the pig and the Lodger holds Daddy's hand and is happy. He keeps checking behind us as we walk and after some questioning I'm informed that he's just making sure the other pig is following. Apparently we have 2 pigs. We hop in the car, close the doors but Mummy has forgotten to let the pig in. The door is opened, the pig is let in, d isaster averted.  We're good to go, the Lodger and pigs on board. Watching My Pe...

The first year after The Lodgers diagnosis every week there seemed to be something new that we would have to get our heads around as parents of somebody with Prader-Willi Syndrome (PWS).  All we could see was FOOD!! At birthdays there's cake. At Halloween there's trick or treating. At Christmas there's too much. At weddings there's food. At Easter there's chocolate. At family and friends get togethers there's food. Walking down the street, there's food! And then there's the things we enjoyed doing, baking and cooking, eating out in restaurants, going for a coffee down in the village, a takeaway when we didn't feel like cooking, picnics up the mountains, a trip to the cinema with popcorn, an ice-cream on a sunny day, a hot chocolate on a wintery day... the list goes on! In that first year, we enjoyed the last time we'd have our favourite cake on our birthday, a selection box at Christmas, an Easter egg, an ice-cream, a hot chocolate...