Wednesday, 16 December 2015


She’d been on a Christmas shopping trip with her class. 

Yesterday’s quest had followed a similar life-skills/shopping expedition last week, when things hadn’t gone smoothly. All I need to say about the previous trip is this: she'd spent the money I’d given her for LUNCH on a book. Parents of non-PWS kids may gloss over this sentence. PWS parents will probably do a sympathy faint. (Her teacher sorted it out, in case you were worried). 

And sure enough, yesterday’s visit proved another occasion when her brain over-frazzled with the stimulation of a big shopping centre and the stress of making choices.

I’d told my daughter exactly what the money I’d put in her purse was for. She was under strict instructions to use the cash for the following: 
  1. Lunch (menu choice written down on a note in her bag)
  2. A Christmas present for her dad (a diary)
  3. A Christmas present for me (bubble bath)
[Trust me on this, she needs the specifics].

UNDER NO CIRCUMSTANCES was she to buy a book, or spend any money on herself this time.

A few hours later she arrived back at school having successfully shopped for a suitable dad diary, and having had a Maccy-Ds with her classmates and - as per her instructions -ordered herself a (relatively) low-fat wrap. 

But it was what else she’d bought that was interesting. She took a children’s magazine out of her bag, and looked at me. I raised an eyebrow.

“This is for me, Mum, but I didn’t buy a book - I bought a magazine which came with a free book attached!”

“I thought I told you not to buy anything for yourself!”

She looked stricken and stammered: “I did get you this...”

And presented me with a large bottle of water. 

I think it's funny today, I do, I really do. 

But yesterday I should have poured it over myself to wake myself up, catch myself on, and not do what I did next, which was to lecture her about listening to instructions, looking after her money better, and not being sidetracked when she was shopping for certain things.

Because I’d forgotten that she’d traipsed round a big shopping centre all day. Had had to make choices all day. Had had to deal with money, and change, and budgeting, which she doesn't really understand properly. How she'd worn herself out completely.

She was shattered. And now she stood there in floods of tears. Her anxieties were popping up one after the other like a game of Whack-A-Mole. She couldn’t contain them. I couldn’t contain them.

The emotional storm subsided. Well, hers did after a shower, hugs, and the lure of her pillow and duvet. I tucked her into bed, trudged downstairs, and sat recriminating myself, whilst she slept like a log.

Today she went on another trip, catching the bus with her sixth-form buddies and their teacher, and heading to Wetherspoon’s for the Christmas dinner she thought she was going to miss when it looked like she’d be in hospital.

And this afternoon she returned, triumphant. She had kept enough cash to pay for her food. She’d foregone her morning snack in order to be able to have the extra calories in her special meal. And she’d bought me a present, which I was not allowed to see.

Fuck knows what it is. I’m just pleased she’s in one piece. And that I am, too.

Song is The Decemberists - Foregone.


  1. The kind of too many stuff to deal : same stuff with brain injury, minus food.

    Does she have hyperacusia, or sensory issues ? That is clearly not helpful to deal with the many choices she had to handle.
    I think that crowd + loud noises + bright lights + too much food stimulation = big mess over managing money and wise choices.

    All day shopping is also huge for everyone. Christmas shopping is stressful for everyone, even the most typical person, and even for a shorter time.
    Mind you someone with PWS, cognitive issues, mental illness etc... !
    You notice like a bright light in the dark on your daughter. But even you, the neurotypical adult, could have easily been distracted in such situation, albeit at a much lesser degree : forgetting present for X, buying a too big size for Y's piece of clothing because you forgot the exact size...

    Ok, the result was not the greatest one.
    But actually, she's been very brave to give it a try and it was not so bad actually.

    It was not a complete failure because she did handle all the stimulations without stealing food, nor any other unsafe behavior.
    Being sidetracked with money and choices has room for improvement, that's true. But actually, it was not soooo bad you need to worry.

    You can pat yourself on the back for having taught her how to manage the food urges in a lawful way and for having been safe and lawful during such hectic day.

    Now, you know that next time, Christmas shopping at the mall for all day with many items to buy doesn't work, especially with handling money.
    Mind you, even the best typical parent of the most typical children have moments they overstimate what their child can deal with !

    Now, you can start with a much shorter list and get a shorter trip at the mall during a quiet time (for example, a school holiday, at a weekday, opening time until 11:30-12:00). Like this, you limit stimulations to teach her much better and limit stress for both :)
    A shorter list without food items at all, because it seems that food items distracts her from learning.
    Then, if she did well after the short trip and very simple list, you can allow her to get a token for herself.
    Learning how to budget and handle money is a tough skill even for the most typical teens, mind you your daughter with PWS !
    After she gets it with these very simple trips, you can increase your expectations.
    Simple is actually smart, not silly.

    And even if I am at university and did well at mainstream school, I cannot handle a whole day at the mall for Christmas shopping at all.
    Your daughter handled it better than I can handle it actually.

    I hear your disappointment and your guilty feelings. But please, treat yourself kindly because you deserve it !

  2. I've just been catching up with your blog, and as usual, your posts make me laugh, give me hope, and bring tears to my eyes. Keep writing!
    Sophie (mum to B, 5 y/o, with PWS).