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?'