The question of whether certain things are just too stressful for my son with PWS is one that I frequently contemplate. When is it better to limit his experiences to improve his chances of happiness? Will repeated exposure to certain stressors really make them easier for him to cope with or do they just condemn him to the same suffering repeatedly?
Flights are a good example. I never liked the idea of bringing my son with PWS on flights. The thought of airports delays and changes to routine were enough to turn me off. Still, airports and flying seemed like something he should get used to so when he was 4 years old we decided to start small. Very small. We brought him on a flight to a nearby island. Total journey time: 5 minutes. OK, it was not exactly a conventional flight. For a start everyone had to be individually weighed beforehand so we could be appropriately dispersed to ensure balance in the tiny aircraft. Also we got to chat to the pilot throughout the flight. Still, it was a flight and it was successful and we went on to have (and sometimes enjoy) adventures much further afield.
For the last several years, however, I have come home from each holiday involving a flight vowing "never again". Up until now the time between the conclusion of one holiday and the planning of the next has always been sufficient for me to forget my past concerns. Last year's airport meltdown, however, is taking longer to forget.
It began, like so many of its predecessors, when I was particularly ill-equipped to deal with it. Our holiday routine (mum, dad, 13 year old with PWS and 6 year old sister) is big on the mantra of carers worldwide: we "share the care". In other words, one parent gets to mind the child with PWS one day and the other child the next (on the second day ice cream gets eaten). It does mean that mum and dad and the two siblings get to spend very little time together, but we have concluded that this is a price worth paying.
Last year I was minding my son for the outgoing journey when he abruptly stated that he had dreamt our plane was going to crash. By now we were through security and I was lugging his bipap machine*, along with his various medications, appropriate snacks, activity books and miscellaneous essential extras towards the gate.
I tried reassurance: "lots of people get nervous before flights". I tried distraction: " you can start your new Sudoku book now if you like". I may have even tried humour. But he was having none of it. Instead he started shouting that by trying to get him to board the plane I was trying to KILL him as he KNEW that our plane was going to crash. This quickly led him to assert (repeatedly) that parents don't try to kill their children. Naturally his mind then jumped to the conclusion that I must not be his mother. Oh no, he was being kidnapped and everyone in the departures lounge was going to know about it. So there he went, storming ahead of me shouting that he was being kidnapped ("SHE IS NOT MY MOTHER" while I struggled (those bipap machines weigh a lot) to catch up, gather the items of clothing that he was discarding, and prepare the speech I thought I was going to have give to the police. Of course the airport was also jam-packed with throngs of nicely-dressed and apparently relaxed people who got to observe the lengthy unfolding spectacle.
While, of course, this falls squarely within the realm of first world problems and is inconsequential compared to what many people have to deal with it, it really was not fun. And it was probably made worse by my knowledge that it could so easily have been avoided if we hadn't picked a holiday requiring a flight.
Of course I had long beforehand used up my full lifetime quota of embarrassment so that wasn't a problem. Rather, the problem was that I had also used up most of my energy and quite a lot of my patience too.
So this year we'll be driving somewhere on holidays. With two cars. And if the going gets particularly rough whichever parent is "on" that day will be bringing the meltdown straight back home.
Looking back I find the incident more amusing than depressing. That probably means that by this time next year I'll be ready to attempt a flight again. Did I mention that when we finally got to our destination last year it also rained nonstop for 3 days out of 5?
*Bipap machine: for sleep apnoea, used to help breathing during sleep