Joshua did not sleep last night – Thursday has become his favourite night for that lark these days! – and so I found myself up and in the snug at 2.45am, when he had wriggled out of the top of the bed and got himself stuck. I told him that he needed a good nights’s sleep ready for his outing to the zoo today, but he took no notice at all. I gave him cereal and then I decided to make a cake and watch Netflix, so as to make good use of my time in the wee small hours.
I watched a film called ‘ The Fundementals of Caring’ about a teenager with Muscular Dystrophy and his new carer. I learnt that the fundementals are ALOHA – Ask Listen Observe Help then Ask again. But that only works if the person that you are caring for is verbal – I am really only left with OH! At 3am all Joshua had to say, repeatedly was ‘Monkey’ followed by a new word ‘Wonky’! I agreed with him that he was a wonky monkey, but that did not get us very far.
In the film, the teenaged boy with Muscular Dystrophy, rarely left his home due to his reliance on medical equipment and he only ever ate waffles and sausage, for every meal. But the new carer took him out on a road trip so that he could make the most of his limited lifespan. It did seem that his mother was protecting him so intensely, through an understandable fear for his safety, that he was a prisoner in his own home. But his carer showed him some of the sights that he had been reading about.
Joshua is not house- bound in the holidays and he has been to some great places in his 15 years, including several holidays overseas. While he enjoys a ride out in the car, likes to meet up with other people, Joshua is a real home-bird. His face lights up as he says with a grin ” Back home!”, so much so you can wonder why bother taking him on road trips. But they enrich his life, offer him new experiences, even if he sometimes chooses to close his eyes and ignore them.
He is likely to be tired today for the class trip to the Wildlife Park, and his gold complexion may well be dimmed, but that cannot be helped, he will have to grab 40 winks on the bus ride there and back.