Monday, 22 October 2012


My daughter is really looking forward to her first alcoholic drink.

It may be four years until her 18th birthday, but her understandable fascination with rules about what she is and isn’t allowed to consume has meant that this topic occasionally comes up.

“You can have a drink on your 18th birthday, sweetheart,” I told her, during the latest discussion. “But you must remember that alcohol has a lot of calories, so you can’t drink it all the time once you’re 18. It’ll be a treat.”

She nodded, sagely.

“What are you going to choose for your drink, then?” I asked, expecting her to say “beer” or “a glass of wine”. She didn’t. Her answer was a little more left-field.

“When I’m 18 I’m going to have a Bloody Mary.”

I laughed, then choked as I managed to suck some tea up my nose. But she wasn’t finished.

“And a Black Death.”

“Er.. .I’m not sure I’m familiar with Black Death,” I replied, trying to remember where I’d heard the name before.

“Oh, it’s a very spicy chilli beer. It’s too hot for you, Mum.”

So there you have it: vodka and tomato juice with Worcestershire and tabasco sauces; and a chilli-laced chaser. Strictly hardcore, my daughter.

Song is Goldblade - Strictly Hardcore

I would, at this juncture, like to point out that Bloody Marys and Black Deaths do not usually figure highly in our family’s alcohol intake. These are drinks that our daughter has seen us have only once, ever, I believe. Little did I realise they were being logged in her database for future reference. It could have been worse, I suppose. There was that one time I had a Long Slow Comfortable Screw Against The Wall...


  1. I really don't want to sound like the bird of bad news, but alcohol, even at 18, is an absolute no no for someone with PWS.
    Not only because of calorie content, but much more because of effects on thinking and judgment.

    Alcohol affects judgment and thinking. PWS already affects judgment and thinking.
    So, why adding another layer of affecting judgment and thinking ?

    I suffer from ADHD. To have experienced it, a small glass of champagne makes me become dizzy to the point I cannot walk.
    ADHD medicines or not, I don't tolerate alcohol at all.

    Alcohol sounds cool, but is not cool. It makes someone do things against her values.

    I am sorry, but it sounds like giving hopes for your daughter to drink a glass of alcohol is making her a promise you cannot keep.
    Because it's dangerous for her, along with her intellectual disability (I don't use the term "learning disability" for mental retardation because it leads to confusion. "Learning disability can also be dyslexia, dysgraphia... whereas overall intelligence is preserved, the person can even be gifted. "Learning disability" for intellectual deficiency/mental retardation is a very misleading term I prefer not to use).

    However, you can make her the same kind of cocktails but without alcohol.
    You can also tell Josy that some adults don't drink alcohol for many reasons and it's okay not to drink alcohol. I don't absolutely drink alcohol because I don't tolerate it, and I am 26 years old. No, I don't suffer from intellectual deficiency, and aside my ADHD and my Single Sided Deafness, I am quite healthy.
    And I don't absolutely feel deprived not to drink alcohol, I feel deprived when I am sick and alcohol makes me become sick (to the point I stay in bed).

    You can tell Josy that it does not worth to trade her health in order to feel "cool" or to "fit in".

    You can also tell Josy that you don't need to drink alcohol in order to be happy at a party.
    Josy can be happy at a party because she is with people she enjoys to be with. She can be happy because she spends a quality time with genuine people.

    If you want, I can find you cocktails recipes similar to what Josy wants but without alcohol. Can you ask her if she is willing to give it a try ? After all, spicy cocktails don't need to contain alcohol....

  2. Thanks for your concerns, Giulia.
    This post was written, as many of my posts are, with my tongue planted firmly in my cheek. I'm not really planning to turn my daughter into a raging alcoholic. It was the incongruity of her hardcore drink order with her niaive and sweet nature that amused me.
    I understand your concerns about alcohol, but I do actually disagree that it is an 'absolute' no-no. I think it is acceptable for her to be allowed one drink (probably a shandy or something very low alcohol) on the occasion of her 18th birthday.
    It is important for her to feel like she is doing something that other people her age will be doing (within the limits of her strictly-controlled diet, which she understands). It's a rite of passage (although thankfully not the messy, out-of-control rite of passage that a lot of 18-year-olds take part in). She can't be let loose on her own at a party with alcohol, of course, in the same way that she can't be left unsupervised around food, but I don't see the harm of a very special treat on a very special occasion. Popping to the pub with her family for a drink to celebrate her coming of age will make her feel 100 feet tall. A few sips of a drink 'for grown-ups' isn't about teaching her that she needs alcohol to feel happy or to be cool, or that she can't have fun without it. It's showing her that although her diet and life is curtailed by rules and considerations that don't apply to most people, we won't treat her like a small child. We have to recognise she is growing up - not at the same rate as a teenager without Prader-Willi - but growing up in her own way. Allowing her to have a shandy as she stands by that marker post is recognition of this.
    I have an inkling that she may not even like the taste of alcohol, and will probably end up preferring an extra spicy Virgin Mary, anyway.
    Oh, and I'm way ahead of you on the cocktail recipes, although of course I still have to take care over the calorie content of non-alcoholic ones, too.

    1. I understand your concerns about doing the same things as her peers because she grows up.

      However, I didn't raise the concern because of calories. Calories is a problem, I completely agree with you.

      My concern is that alcohol can affect thinking and judgment. Even if Josie has only one drink while eating (so, not drinking like crazy), even if she is supervised.
      Even with a drink with a very low degree of alcohol, she can do things who can be dangerous for her (or someone else).
      It's not much a matter of calories, but more a matter of how alcohol affects her brain, the way she thinks and the way she decides.
      Alcohol and PWS don't go together not only because of the calories, but especially because even with a very low degree of alcohol, she can be trapped into dangerous situations. Like when she is her usual self, she would say no to something she knows it's dangerous for her, whereas after having drunk a glass of champagne, she will say yes to the dangerous thing.
      The quantity of alcohol is not the the problem, the problem is alcohol tout court (as we say in French).
      The fact that the drink contains alcohol makes me say that even with very low degree and even supervised, I say that PWS + alcohol is an absolute no no. Again, not only because of calories, but also because it affects the way she thinks and judge no matter how much alcohol she drinks.

      Also, you have teens without PWS who don't drink alcohol.
      No, drinking alcohol does not prove at all that you are "more cool", or "more acceptable" if it means running away and putting yourself in danger. No matter the amount of alcohol, even at a very low degree.
      You have teens with epilepsy and cannot drink alcohol at all (because it triggers a seizure and can be fatal mixed up with meds), you have teens who take lithium for bipolar disorder and cannot drink at all because their lithium levels can become toxic, you have teens who don't drink alcohol at all because they don't tolerate it (puking my guts and having such a headache that it seems to burst anytime soon, add the vertigo to the mix, I swear you that it was no fun. And contrary to what you think, I drank only a glass of champagne with a normal meal) etc etc...

      I think that the rite of passage to the 18th can be substituted by something else, like being able to go to the bowling etc etc...
      To go somewhere she cannot go before 18yo and does not involve alcohol. I would say that a day spa can be fine and be a good way to recognize that she grows up, but without taking the risk to endanger herself. I hope it makes sense.
      I am also nearly sure that Josie can be pleased with such a trade up because I noticed that you offered her a foot spa : it seems she wants to be a big girl who takes care of herself, and you can use it as a way to find a rite for celebrating the 18th birthday but without endangering herself.

      You can also make her meet teenagers who don't drink alcohol and are okay not to drink alcohol.

      You can also tell Josie that alcohol and beauty don't go together (not only for the calories, but also for the way it marks the skin, plus it messes up the liver, the pancreas etc etc...).
      Why not a very special spicy smoothie for her 18th birthday with fruits, non fat milk and if you want, fizzy water (the 0 calorie fizzy water, like Perrier) ?

      Okay, since you agree, let me have a look for the non alcoholic cocktails (I didn't start the research yet, with all the work I had to do and a software to translate from English to Italian...).

  3. Okay, some recipes :

    The non alcohlic Virgin Mary :

    Homemade lemonade :

    Ray of sunshine (non-alcoholic cocktail) :

    Shirley Temple :

    The pink pick-me-up :

    Also, I've found dozens other recipes through Google. Like here :
    or here :
    or even here :
    also here :

    1. Thanks for these. Very kind of you to hunt them out for me.

  4. Carolyn,
    I'd like to add to my comments that if I lived nearby you, I'd be very happy to bring your daughter outside for safe big girls things. Something to acknowledge she grows up but in a safe manner (like going to shopping, or going to pamper herself... They can be special treats to acknowledge that she grows up without the safety threat).

    Unfortunately, I live in France :( Shame for me. Because I'd be truly happy to do it for someone more disabled than me (I have *only* ADHD and Single Sided Deafness, which is not much compared to PWS. However, life is not about comparing myself with who suffers more etc etc).

    Take care Carolyn, and I hope a good life for Josie