Wednesday, 8 February 2017

Do you want to hear about my day?

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.... Perseveration!  

The Lodger gets 'stuck' on a topic, he will repeatedly ask the same question over and over again and will return to the same topic a lot. Fortunately, with thanks to the parents of older children with PWS and research, there are strategies to use to distract and change topic.

Unfortunately tiredness, anxiety and over-stimulation can make it hard for The Lodger to become 'un-stuck' but mostly limiting questions and distraction works. 

We have a three question limit were The Lodger can ask the question and we will tell him the answer and then ask him the answer.  Some other families use flashcards or just a piece of paper to tick of three boxes but at the moment, we use our fingers, which also serves another benefit of learning to count! 

We are fast becoming experts of distraction. Distraction is used constantly throughout our day.. from lessening anxiety, to changing the topic from food, to changing the topic from whatever he'll get stuck on and one of the most important uses of distraction is for when plans change. 

We rarely tell The Lodger any plans because as history has proven when we tell him a plan, it will inevitably end up changing and that will lead to us delving into the 'TOP LEVEL  only to be used in the RED emergency zone' distraction tools... things we know he absolutely loves such as 'A Visit the Farm!', 'Go to feed the ducks' or Visiting family/friends'. 

But generally turning on music, having a good dance or game of hide and seek does the job. Also HUMOUR! Never underestimate humour... The Lodger loves nothing better than having a good laugh. They do say it's the best medicine. 

Yesterday he was chasing me around the house, in hysterics being the Oven Glove Monster.

We've had tough days in the last few months but our good days far out weigh our bad ones! 
If anything, The Lodger has shown us not to dwell on the bad ones. He'll happily tell you all about his day and will matter of factly mention if he has had a sad or happy one and move on to the start the new day...... which inescapably starts with 'What are we doing today?'






Monday, 16 January 2017

I hate food

I hate food.

Now don't get me wrong, I know food is vital for life and choosing a healthy diet is something myself and my husband have always done, long before Prader Willi Syndrome came into our life. Truthfully, we might have felt a lot less guilty when it came to having a  takeaway and treat food but we have always chosen to fuel our bodies healthily. 

Then came PWS and we made our home a safe haven for our son right from the beginning, right from diagnosis day 1st August 2012. We cleared out the junk food, we put our rule book into play; No eating outside the kitchen, no free access to the kitchen, healthy food fills our fridge and cupboard... we've made our home as secure as we possibly can.  And for 4 years and 15 days we never mentioned the word 'Hungry' infront of The Lodger. 

And then that day came. The day we never wanted to have. The day we wished wouldn't happen... as part of us has always hoped he'd be the one person with PWS not to feel hungry...

'I'm hungry!' he said, as he rubbed his tummy. 

Granted we were on the longest car journey and we were also feeling the unspoken word, as we road tripped through Canada on our holiday last summer. Ironically, a holiday we took to attend the International PWS Conference.

'I'm hungry!'   he declared again, as I think we were both in shock/sadness/disbelief when he said it the first time.

Our hearts sank and broke a little bit more. 

Food for The Lodger isn't just something you eat, it's goes much deeper than that. It's a constant preoccupation for him. It's his last thought going to sleep at night and even at just four years old, it's how he schedules his day.. breakfast, play, sleep, snack, play, lunch, play, sleep, snack, play, walk, dinner, play, books, bed.. 

Today is Blue Monday and the Lodger must have been feeling the effect of it, as he had a bad day in playschool today. Sometimes we can easily pinpoint what went wrong, a change in routine or tiredness but he's left myself, his preschool assistant (PSA) and playschool teachers guessing today.

And the unfortunate thing about todays upset in playschool, was it happened just before lunch time. We are very lucky, make that extremely fortunate that The Lodges PSA and Teachers knows the rules, no reward or punishment with food and so it was, that we found ourselves in a tricky situation...

Let him have lunch = reward
Don't let him have lunch = punishment

There's no thin line here. 

In the end,  I collected The Lodger and brought him home sobbing, he had his lunch at home but he wasn't allowed to go to his grandmothers house. 

And that's why I hate food! 

It's always there. Try as we might to keep him safe and distracted, food is always there. It's never going to go away, it's never going to be something he doesn't think about, it's constant. As much as were tried to protect him from the word hungry, he learned it and uses it. As much as we try to make our home safe and our lifestyle reliable because believe me, without fail our day is scheduled around breakfast, snack, lunch, snack and dinner, The Lodger constantly needs reassurance. 

Every night, before he goes to sleep and after we have said I love you, he says ‘See you for breakfast!’.

And that's why I hate food. 

It isn't something my four year old son should have to worry about. 

Though I do have a sneaky feeling, The Lodger might be getting sick, unfortunately there's no thermometer to measure this, its just intuition. He's never had a high temperature, even when he's been very ill. He rarely shows any typical signs of illness. We have our own telltale signs; challenging behaviour and increased food obsession. 

Or it could have just been Blue Monday. 

We will hit restart and the trials and tribulations of todays day won't be spoken about. It's in the past and can stay there. Tomorrow is a new day. 

Alexander and the Terrible, Horrible, No Good, Very Bad Day by Judith Viorst


Sunday, 15 January 2017

The Shuffle Monster

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. Important not to wake wake Walter. Then he makes his way to our room slow and steady and amazingly with no action boots, always worth celebrating the little things!

So back to this morning as we hear The Shuffle Monster approach it's time to lie perfectly still while launching into fake sleep mode. We've been here before, we know the drill.

The Lodger climbs up the middle of the bed, so far still silent. He spreads himself out making sure to have enough space,  eyes wide open staring are the ceiling and for a few seconds I convince myself he's going to go asleep.
And then it starts....

A B C D E F G...
H I J K L M N O P...you get the idea...
Followed by the rest of the alphabet in a mumbled song version. 
It's best not react, sssssshhhh, it might stop. 

It doesn't. 

We are then treated to a few choruses of The Wheels on the Bus and then Old McDonald had a cow. 
Moo Moo Mooooooooo. (and a lot more Moooing, sometimes a solid 10 minutes of Cow)
Again it's best to stay silent.

Then he turns to me and it's one of those thin line moments between 'cute son' and 'annoying son'.
He puts his nose against mine and says  'Heeeelllllooo'. I move away, obviously asleep, but he follows. I think he knows.

Luckily he gets bored and tries to see if there's any joy on Mummy's side. He climbs onto her head and whispers into her ear "I love you" followed by a very Lodger factual statement: "I am lying on your hair" just in case she wasn't aware. 

Then the next stage. The removal of the socks. I don't always hear this bit but it suddenly becomes apparent when the sock is placed over my nose in a 4 year old mild peril sort of way. The skill here is to slide the sock down from the face while staying "asleep" and avoiding smothering by small child. 

When the boredom from that fun game kicks in, he whispershouts (yes its a real word) "Dad Dad I'm going to go play
And then I fall into the trap. 
I reply "Ok" and he shouts "YOU'RE AWAKE!!!

He turns away happy to have achieved his goal, the alarm goes off, I get up and The Lodger returns to sleep for a quick snooze before breakfast, sure its still early.
And I'm sure we'll repeat proceedings tomorrow, after all The Lodger does like his routine.



Thursday, 5 January 2017

Prader Willi Syndome - The Liam Neeson Effect

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 read this blog.

The Lodger is young but already struggling with anxiety and control of the world around him. He likes to know everything that will happen ever and then he wants to know what will happen after that and then he wants to know why all of the above happened/is happening/will happen. Keeping up?

Consistent repetitive questioning is common in this quest to ensure we never  EVER change our story on the existence of EVERYTHING.

Earlier today he spotted a dog in a car in the shopping centre and asked who owned the dog. Obviously we didn't know but this just wasn't good enough. He then spent the entire shop asking random people if they owned the dog and if they knew his name. Changing from these stuck subjects can be quite a chore and while this may seem hilarious which in fairness it kinda was, as we watched people struggle and squirm firstly to understand the Lodger who's still working on his speech and then realising that the question itself was also a tough one, since it turned out we never did find the dog owner. 

This is just one example of the Lodger finding an every day situation and stressing himself out trying to find a solution. 

And that's stress that's not even about this favourite subject, FOOD.

But then there's the parental stress, the stress we try to take so the Lodger doesn't have to or in most cases work ourselves up about that doesn't even happen. 

Today Fm Alison Curtis & The Lodger and Us 

Recently myself and my wife took part in a radio interview raising awareness for PWS (Listen here). Naturally the Lodger was there, not one to miss an opportunity to meet new people. As we waited the lovely receptionist got something from behind her desk and brought it over to the Lodger behind her back telling him she had a present for him.
We knew it was a lollipop. It's always a f@*king lollipop. 

We sat momentarily while the stress built. Then we switched into food police mode (a kinda halfway place between being rude to strangers and protecting our son from lollipops and their sort) while putting codeword operation lollipop into action, a plan we'd trained for many times at home but never had to use. It was here, it was now. Time for some serious Liam Neeson action.

As I dived from my chair across the table intent on taking out the attacker, my wife spun into action to block the impending lollipop. But we were too late. A small soft cuddly bear emerged from behind the, again, lovely lady's back. 

We had created a stress that didn't exist. As we picked ourselves up off the ground the lady looked at us oddly but sometimes it's best to just smile in those situations. 
Let's face it, it's going to happen again.


So moral of the story: Don't try to be Liam Neeson or you'll just end up looking stupid, lying on the floor while a nice lady gives your son a bear.




Thursday, 8 December 2016

Prader Willi Syndrome, it's not always fun!

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 his surroundings lately in school and also at home. If I was to guess maybe he’s also feeling the hunger now and not knowing best how to deal with it. Not that anyone of us would understand that.  Don't forget to add to this the 5am starts, early waking, another fantastic characteristic of PWS. The syndrome that just keeps giving. 



But all that aside The Lodger is still The Lodger. He can now open the stair gate and climb up or down all by himself, a surprise we both received at different times and at different ends of the stairs on separate days, both episodes resulting in the similar silent tickling of the back of the leg, the shocked jump into the air while screaming How the f*@# did you get here????!!! 

But once you calm yourself down, explain the dangers of stairs management (most probably to yourself since it keeps happening) while secretly delighted he made the first solo trip and holding in the smile all is forgiven until the next time.

And then you’re waiting looking forward to the next time.

Because in the world of Prader Willi Syndrome each little step for The Lodger  is a giant step for that same small baby that only 4 years ago couldn't lift his head.


The Lodger still Winning at PWS.


Thursday, 21 July 2016

The Innocence of Language

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 into the rambling sentences of untranslatable pigeon English. Sometimes directed at you, sometimes at the invisible farmer minding the cows in the corner of the sitting room. Near where Bob the elf lives if you can picture that.


The early days of learning this new language created little gems for us which after a few weeks and more refining he's decided to join the rest of us and drop from his vocabulary. 

We see it as a positive phase to remember these developments so it's more enjoyable seeing how far he's come over time.

It probably started with the doorbell, the "ding" orgininally, then the "ding ding" and now finally the "ding dong". Followed quickly by "open door" We now spend a lot of time opening doors just in case there might be someone there. And knocking at doors so we can open the door again to see if someone us there. There is generally no one there. But we keep trying.


There are two interesting parts to me here. Firstly the simplicity of words and phases that the Lodger has learnt and how he has decided to develop for himself just like the ding ding above.

The second is the sheer annoyance and shock when we say everyday things we probably take for granted that to him just don't make sense. Generally the lodger is right. Because innocence and logic cannot be argued with.

The Lodger now helps to make his meals. Obviously the simple, not near the hot cooker ones. So together we get the pitta and we get the hummus and we explain that we are now going to butter the pitta....which begins the shock. Probably because he doesn't know what butter is. So he insists that we hummus the pitta. So we do and he loves his hummused pita. As I've said all very logical and impossible to argue with.

Current exciting words for no reason whatsoever, as well as the Lodgers repetitive nature and unbelievable memory include Gate (we investigate a large number of gates) choo choo  (cause they are just so much fun) house,  haaawp (shop), walk, no car, no bed and if course the standards in the world of PWS, breakfast, lunch, dinner (and strictly only in that order)
You can also learn from the Lodger. Apparently a pregnant woman keeps her baby in a tummy house. And you can't really argue with that. It's a bit early for Uterus talk I think.

The lodger loves saying hello. He spends ever moment of our walks saying Hello man, Hello lady, Hello Cow, Hello Bus, Hello man, Hello man etc on and on.
But then the logic.
Hello dog. Oh look dada more dog. Hello more dog.
I'm not sure what happens if we see three dogs.

Wednesday, 6 July 2016

The Great Bake off!

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... and I went to talk to The Lodger. If something new is going to happen, if we are going to change activity or go somewhere, The Lodger likes to know in advance. It makes transitions from task to task much easier. We set the timer to 5 minutes to activity change and he's content to do the next thing on the list. 

I told him I was going to bake and would he like to join me. Yes, was the resounding answer.

It couldn't have gone better. We made Banana & Porridge bread together. He helped mash the bananas, helped weigh out the oats and had a great time shaking the cinnamon into the mixture, he loved stirring in the coconut oil and helping me scrap it all into the baking tin. 

I popped it in the oven and he went back to play. It was a success. 




The Lodger is almost four now and every morning, he helps to prepare his own breakfast. He carries the milk from the fridge to the counter, he gently pours his milk and he carefully mashes his wheatabix. He often helps to prepare other meals too, unless he's too busy playing.


I won't lie, I watch him like a hawk but so far, so good. 

When we got the diagnosis of PWS, we automatically started thinking of all the things The Lodger wouldn't be able to do.... can't do this, won't be able to do that.. or that... or that... but in the last almost four years, he's shown us what he can do...

Eat out in restaurants/cafes - Yes!

Go to birthday parties & family celebrations - Yes!

Learn to bake,cook and prepare food - Yes!

With a few tweaks, he can join in and participate. 
The Lodger has taught us that anything really is possible.....