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 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.