A blog about PWS and
ridiculous scenarios by MH.
I've often thought about starting a blog
about my experiences of parenting a child with PWS. But I've never actually done it, because I
suspect I would either end up going long periods without writing anything, or,
worse again, end up forcing myself to write thereby adding to the
already-too-long list of things I feel I have to do.
So, when I found out that IPWSO welcomes
once-off or occasional guest blogs from anyone
who feels they have something to say about PWS I was delighted.
But what should I write about? Profound realisations I may have reached
about society and myself during the 10 years I have parented my son with
PWS? Practical methods I have found work
well in helping my son live a good life?
My experiences dealing with therapeutic, medical and educational
services? While, like most parents, I
have opinions on all of these subjects, I have instead decided to write about
scenarios that I consider ridiculous, and that unless I was a parent of child
with PWS I can't imagine I would ever have been exposed to. So, here goes ... my top 3 (for today!)
ridiculous PWS scenarios...
During a recent overnight visit to
hospital the worse-than-usual bureaucracy led to my son being confined in a
corridor for several hours awaiting admission while catering staff took orders
for evening meals. The result was that
when he was admitted, no meal arrived for my son. With his anxiety levels soaring I asked staff
what could be arranged and was told that he would be brought an omelette. Unfortunately, when the omelette (which incidentally
could have fed a family of 5) arrived, it became clear that the catering staff
could provide nothing in addition to the omelette (an entire children's hospital
was apparently completely out of all salad products, vegetables, or even a
slice of bread). While I calmly informed
my son that I would go to the hospital shop and to get him something to
accompany his portion of the monster omelette, I faced a dilemma. What would I do with the omelette while going
to the shop? Would my son be able to
resist eating it all if I left it with him?
Could I reasonably ask the family surrounding the neighbouring bed, who
were at that point having a meal of ice-cream and chocolate, to
"mind" my son's eggs in my absence?
Or did I really have to make my way down a sequence of long corridors
followed by two flights of stairs followed by more corridors to queue up in a
shop and select and pay for the healthiest option available WHILE ALL THE TIME
CARRYING A PLATE OF EGGS? Surprisingly,
at the time, the clearly ridiculous option (the last one) seemed the most
feasible!
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My son has great hearing and, like many children, appears to be better at hearing whispered conversations not intended for his ears than things said directly to him at high volume. During one recent whispered conversation a visitor to our house reported to me the sad news of the sudden death of a neighbour. In retelling the tale of this death she emphasised its suddenness by saying that the man had just come home, made a cup of tea and put two slices of bread into the toaster when he collapsed and died of a massive heart attack. My son, who was in a different room at the time and had not to my knowledge been listening, immediately interrupted and asked in a high-pitched clearly anxiously voice "Mom, what happened to the toast then?". Why does this meet my definition of a ridiculous scenario? Because I was left with no idea how to explain to the visitor why my son would be more worried about 2 potentially wasted slices of toast than a sudden tragic death, or why I was found this so hilarious that I couldn't contain my own laughter no matter how inappropriate I knew it was!
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It was one of those days! In the space of 24 hours I had intervened to prevent my son being given a lollipop in both a barbers and a shoe shop, a bar of chocolate by an old man who was in a hospital bed beside my son's grandfather, and an apple by a swimming pool attendant. And then my son got stuck. Bizarrely, a revolving door at the entrance to a hotel froze with my son stuck inside. Immediately a receptionist spotted the problem and came running over. While I assumed that she was coming to fix the door, it emerged that she was instead coming over to push an apple through a crack to my son, presumably to distract him until an engineer could be located. And so yet again I spontaneously adopted the part of crazy woman lunging at the apple and shouting "No!" at the shocked receptionist. Although the incident was resolved in a matter of moments, the image of my son being stuck in a glass case with strangers pushing food in to him remains with me several years later. Would this scenario seem as simultaneously ridiculous or threatening to anyone who was not a carer of someone with PWS? I suspect not!
It was one of those days! In the space of 24 hours I had intervened to prevent my son being given a lollipop in both a barbers and a shoe shop, a bar of chocolate by an old man who was in a hospital bed beside my son's grandfather, and an apple by a swimming pool attendant. And then my son got stuck. Bizarrely, a revolving door at the entrance to a hotel froze with my son stuck inside. Immediately a receptionist spotted the problem and came running over. While I assumed that she was coming to fix the door, it emerged that she was instead coming over to push an apple through a crack to my son, presumably to distract him until an engineer could be located. And so yet again I spontaneously adopted the part of crazy woman lunging at the apple and shouting "No!" at the shocked receptionist. Although the incident was resolved in a matter of moments, the image of my son being stuck in a glass case with strangers pushing food in to him remains with me several years later. Would this scenario seem as simultaneously ridiculous or threatening to anyone who was not a carer of someone with PWS? I suspect not!
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