It's been a while since I've put pen to paper as quite a lot has been happening these past couple of months. One of them was the event of a significant birthday which required quite a lot of organising with half of the family coming "across the ditch" from Australia to join the celebrations.
The plan was to rent accommodation right by the beach - a large house which took 10 people plus small dog, and a second house was rented for another 5 members of the extended family. The celebration soon took on the order of a rather large food-and-wine-festival with lots of going out to test various restaurants and local cafes, and families coming and going. After a lot of discussion, we decided that the temptation for the one with PWS would be too great and to avoid all the issues that go along with festivities, she would join us for the last few days in a more food-manageable situation at our family bach. To give an element of excitement to this we arranged for her to fly to the nearest city where we would pick her up. Now, New Zealand is just a small place relatively speaking, and airports are not large and bewildering as in some countries and there are not miles and miles of Gates to find, so I thought this would be relatively simple, especially if I organised an air steward to take care of her. She was determined she could do this by herself - no problem! "I'm over 30 now, Mum" she said, but agreed that having someone to show her where to go would be ok.
My logical process of thinking was, the flight was under an hour. She could not escape. She enjoys flying. They no longer serve food. Someone was there to keep an eye on her from Gate to Gate, so all will be well. I was not going to worry about this.
The day dawned in the middle of a howling gale with flights delayed and hers cancelled, but they put her on an earlier flight which meant a rush to the airport. She was last off the plane and came through the doors with an air-hostess. Even though she said the flight was awfully bumpy and someone behind her had been sick, she was just fine. And I breathed a huge sigh of relief. All was well. Fantastic! The plan had gone according to plan! What a miracle!
But, as we all know, nothing really ever goes to plan, does it?
She got into the car and showed me a large paper cup full to brimming with sweets. (On Air New Zealand it is customary, and always has been, to had out boiled sweets just before landing.) She also had managed to score two packets of crisps and three cookies. Hmmm.... did the flight attendants think she needed feeding up? Or had she applied the charm and asked to take some extras "for her family"?
The other thing that happened was slightly less straightforward but food was at the centre of it all. She has been given an opportunity to be on a committee helping to organise "Mix and Mingle" events for her residential community. I was delighted when she told me that she had this responsibility and that she enjoyed going to meetings and talking about their next event, organising invitations and designing flyers on the computer and so on.
However, the food available at this place was your average burger and chips, pizza and chips, fish and chips. The place also served alcohol. Bear in mind that she was the only person with PWS and the whole idea of having to eat before going out in the evening was simply not going to work once she knew what else was available... so inevitably you're staring disaster in the face. No matter all the cautionary words of wisdom about good choices, all the promises made, all the extra exercise that might (or might not) have taken place, the temptation is really too great to expect her to cope with.
Now combine this with the position of responsibility of being on the committee ("I can't possibly go after the food is served, I'm on the committee!) and it's bound to go pear-shaped. As it did the other night. She gaily ran up a bar tab ("I am allowed to do this, I'm on the committee!), and ordered pretty much one of everything. It wasn't a great night all in all and the next day wasn't much better as remonstrations had to come, and consequences of debt had to be faced.
I realised that, for her, a "position of responsibility" became quickly translated into a "position of authority" which allowed her to think she had the right to do what she liked. Anyway, after the remonstrations came the capitulations and new strategies put in place for food, bar tabs, and authority.
So, whether stretching her independence wings by flying solo, or being on a committee, there are always - as my Grandfather would say - many a slip twixt cup and lip. Finding the balance is the reality.
The plan was to rent accommodation right by the beach - a large house which took 10 people plus small dog, and a second house was rented for another 5 members of the extended family. The celebration soon took on the order of a rather large food-and-wine-festival with lots of going out to test various restaurants and local cafes, and families coming and going. After a lot of discussion, we decided that the temptation for the one with PWS would be too great and to avoid all the issues that go along with festivities, she would join us for the last few days in a more food-manageable situation at our family bach. To give an element of excitement to this we arranged for her to fly to the nearest city where we would pick her up. Now, New Zealand is just a small place relatively speaking, and airports are not large and bewildering as in some countries and there are not miles and miles of Gates to find, so I thought this would be relatively simple, especially if I organised an air steward to take care of her. She was determined she could do this by herself - no problem! "I'm over 30 now, Mum" she said, but agreed that having someone to show her where to go would be ok.
My logical process of thinking was, the flight was under an hour. She could not escape. She enjoys flying. They no longer serve food. Someone was there to keep an eye on her from Gate to Gate, so all will be well. I was not going to worry about this.
The day dawned in the middle of a howling gale with flights delayed and hers cancelled, but they put her on an earlier flight which meant a rush to the airport. She was last off the plane and came through the doors with an air-hostess. Even though she said the flight was awfully bumpy and someone behind her had been sick, she was just fine. And I breathed a huge sigh of relief. All was well. Fantastic! The plan had gone according to plan! What a miracle!
But, as we all know, nothing really ever goes to plan, does it?
She got into the car and showed me a large paper cup full to brimming with sweets. (On Air New Zealand it is customary, and always has been, to had out boiled sweets just before landing.) She also had managed to score two packets of crisps and three cookies. Hmmm.... did the flight attendants think she needed feeding up? Or had she applied the charm and asked to take some extras "for her family"?
The other thing that happened was slightly less straightforward but food was at the centre of it all. She has been given an opportunity to be on a committee helping to organise "Mix and Mingle" events for her residential community. I was delighted when she told me that she had this responsibility and that she enjoyed going to meetings and talking about their next event, organising invitations and designing flyers on the computer and so on.
However, the food available at this place was your average burger and chips, pizza and chips, fish and chips. The place also served alcohol. Bear in mind that she was the only person with PWS and the whole idea of having to eat before going out in the evening was simply not going to work once she knew what else was available... so inevitably you're staring disaster in the face. No matter all the cautionary words of wisdom about good choices, all the promises made, all the extra exercise that might (or might not) have taken place, the temptation is really too great to expect her to cope with.
Now combine this with the position of responsibility of being on the committee ("I can't possibly go after the food is served, I'm on the committee!) and it's bound to go pear-shaped. As it did the other night. She gaily ran up a bar tab ("I am allowed to do this, I'm on the committee!), and ordered pretty much one of everything. It wasn't a great night all in all and the next day wasn't much better as remonstrations had to come, and consequences of debt had to be faced.
I realised that, for her, a "position of responsibility" became quickly translated into a "position of authority" which allowed her to think she had the right to do what she liked. Anyway, after the remonstrations came the capitulations and new strategies put in place for food, bar tabs, and authority.
So, whether stretching her independence wings by flying solo, or being on a committee, there are always - as my Grandfather would say - many a slip twixt cup and lip. Finding the balance is the reality.
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