Tuesday, October 22, 2013

Eggs, Toast, and Apples



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!


8 comments:

  1. I laughed and laughed at this - thank you for sharing, MH, I can absolutely identify with all your scenarios!

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  2. Oh my....YES I can relate to all of these scenarios! Thanks for writing this!
    Jen B., Mom to Sophie (9, PWS) and Kate (14, teenager)

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  3. Good to know its not just us that has the craziness, especially the toast that would so be kellys response

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  4. All three of these scenarios resonate with our experiences! Thank you for sharing such great stories.

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  5. Awesome stories! Thanks so much for sharing! It is unbelievable how close to home these all resonate in my house. Just this morning I found myself removing a large box of cookies that are to be a gift for someone's birthday and putting it in my car as I could not find a 'safe' place for it in the house! What we do :-)

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  6. Thank you for sharing! Hunter is 20 years old and I havr been told numerous times that I should write a book...the outrageous stories in 20 years have piled up....one must keep a sense of humor to keep ones sanity.... :)

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  7. Thank you for this! I was just thinking today that only in the PWS world would a parent feel guilty for giving their child a banana (not even a whole banana....just a bite). :) I have realized that sometimes we just have to laugh...otherwise we might cry. (mom to Clover (PWS, 14 months) and her little brother Henry (12 months).

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  8. OMG! Thank you for this AWESOME post! The toast one had me laughing out loud-my nine year old would have said the exact same thing! Thank you!!!!

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