News, views, thoughts from the International PWS Organisation.
Wednesday, 14 December 2016
... So this is Christmas...
A very Merry Christmas and a Happy New Year
Let's hope its a good one Without any fear...
John Lennon wrote So this is Christmas as a protest song against the world's wars and disruption. I find the lyrics fit my own life like a glove...
So this is Christmas And what have you done? Another year over And a new one just begun
With age, the question, "what have you done?" becomes more of a blur as the years tend to quietly slip away because the question is more like, "what have you survived?" and of course, I am referring to the wide world of PWS.
When the phone rings late at night, my survival mode kicks in immediately. It's more like a default mode which over the years has become like a suit of armour so that I am clad from head to foot with no chinks - we can not afford chinks because if there are any, the system fails. Once girt, I can answer the phone calmly. Is it my daughter in a total rage about something, or is it (more likely) one of the staff phoning to let me know that there has been a meltdown and it has been necessary to involve the police.
Now, I don't want to scare you because 90% of the world's PW population won't be the same as my daughter and the 10% that perhaps experiences the same sort of behaviour will totally understand.
And so this is Christmas
I hope you have fun The near and the dear ones The old and the young
Things do settle down and the experienced police are kindly, yet firm. They are, after all, the pinnacle of heirarchy and there to be listened to because not only are they "in charge" of her, but also have authority over the staff - and that counts, in her book. Usually the meltdown is over something very, very simple. Like wanting full-fat milk and not the usual variety of trim, or skim milk. "Wha-a-t?" I hear you say - well, that's the trigger behind something that has built up and built up. Usually something to do with the "near and the dear ones, the old and the young"
Christmas is, as we know, all about family. In a way, it is fortunate that the old ones have shuffled off their mortal coils because I am quite sure they simply would not understand that in spite of her 31 years, her behaviour can rapidly slip to that of a 3 yr old who is denied something they decide they should have. Mostly we can all manage a meltdown within the four walls, although, should there be any guests at the feast, their looks of utter disbelief do not go unnoticed. Quickly their glasses are refilled and questioning looks and offers of help are politely refused.
A very merry Christmas And a happy New Year Let's hope it's a good one Without any fear
I always hope that the very young ones do not grow up fearing this rather different member of their wider family. I know, one way or another, there will come that moment of recognition that she is really and truly different, and I hope that with that recognition comes perhaps some kind of understanding. A lot to expect from a child, but maybe in later years they will understand.
I had a cousin with Down's Syndrome who lived most of her days with her parents, my great aunt and uncle who were very much part of the wider family. I was always happy to visit her because she would show me her extensive collection of pictures of the Royal family - the little prince and princess (Charles and Anne) and their happily smiling parents. I would always share my chewing gum with her, and, although I could not understand what she said, she was always smiling as far as I was concerned. Now that I am older, I often wonder how her parents managed. Perhaps they just lived quietly and peacefully in their home until they died. At that stage, my cousin (whom I never really saw when I was an adult) went to live in a residential home. I don't know what that would have been like for her.
And so this is Christmas For weak and for strong For rich and the poor ones The world is so wrong
I watch my small grandchildren try to come to grips with the world around them. There's not much they can control, so there's quite a lot of struggle between what can be done and what can not be done. They will grow up and understand how to manage their world, successfully integrating it with the worlds of others around them. My daughter won't. She has come pretty much as far as she can in this world. She is not bothered about world events as they do not concern her directly. She was not as upset as I thought she would be by the death of one of her heroes, Jonah Lomu (a great Kiwi rugby legend), but reminded us all that she had received a letter of thanks from his wife after a very small contribution she (my daughter) had made towards his recovery from kidney failure. She had played her part in his life. At the end of the day, all I want for her is for her to be happy, tranquil and enjoy the life she leads. After all, it's a pretty good one.
And so Happy Christmas For black and for white For yellow and red ones Let's stop all the fight
A very Merry Christmas And a happy New Year Let's hope it's a good one Without any fear