Saturday, March 31, 2012

No Thank You, She Doesn't Eat Cookies

We were on the soccer fields today.  I know, shocking!  While we were there, another little girl about Ayden Jane's age came over to play with her.  They were very cute playing with some block sort of things that we brought.  After a while, the little girl went over to her families blanket and invited Ayden Jane to tag along.  No worries...  Then the little girl's parents started to give out snacks to their kids and offered Ayden Jane a cookie. Ayden Jane was great and tried to say no but mostly just came my way.  The dad asked me if AJ could have a cookie with them and of course, I answered, "oh, no thank you but she can't have cookies."

It seemed so 'normal' as it came out... until the look on his face.  I began to realize how not normal a simple sentence like that must sound to the average person. It is typical in our world now...  It doesn't even seem far fetched anymore to think that Ayden Jane hasn't had a cookie.  In that moment, I wasn't sure what to do.  This man who I will likely never see again, is thinking I am a lunatic Mom who doesn't even allow her kid a cookie?  What sort of parent doesn't allow her kid a cookie?  Should I tell him why?  Ayden Jane has had so much fun playing with his daughter and has totally held her own.  Today, she was just a typical little sibling on the side line.

A bit later, Ayden Jane was talking to another parent and the topic came to birthdays... It is a common topic with Ayden Jane as she, being the youngest, is in a very large hurry to grow up and catch up with her siblings.  The mom asked AJ what kind of birthday cake she likes for her birthday... Ayden Jane was silent for the first time in hours. LOL.  I handled that one much better just saying, remember Ayden Jane, we didn't have birthday cake, but Daddy made a special treat with you.  She got excited and jumped right back into the conversation and told the lady all about making dark chocolate covered strawberries and oranges with her Daddy.

I guess it is not really any different than parents who have their kids on gluten free or ketogenic or other special diets.  I just need to figure out a good short version of why Ayden Jane is on a special diet.  I struggle with the short version thing.  PWS just doesn't really have a short version!


  1. Hello,
    You already found the answer in this short sentence : "
    I guess it is not really any different than parents who have their kids on gluten free or ketogenic or other special diets."
    So, the short version would be "AJ has Prader-Willi syndrome and this illness forbids her to eat cookies". Period. Don't linger on more explanations. You tell that she has a medical condition, what is this medical condition, and thus, it requires a special diet.
    The other parent wants to know more about it ? Be it, it's indeed opening the line for education and awareness.

    I know that AJ is not her PWS, but naming the syndrome helps people to connect on why AJ doesn't eat treats that normally, children are edible to eat.
    But AJ's PWS is part of who is AJ, a bit like a patchwork : strengths, weaknesses, what she likes, what she dislikes....

    Like for well known special diets, simple is best. Don't hesitate to name the syndrome, it will make you more credible on the fact that she has a medical condition. If you stay vague about it, then, other parents are much more easily prompt to judge you. I know that it's sad, and it shouldn't exist.
    As rare as it is, name it, name it, name it.
    You wouldn't be afraid of naming coeliac disease. Don't be either afraid of naming Prader-Willi syndrome even to a stranger.

    It will also help you to separate the intelligent persons from the idiots, and you'll see quickly who worthes your energy and who doesn't because they will never understand you and AJ's uniqueness.

  2. Nope. I don't agree at all. I don't think AJ needs a PWS label... I don't think ANY child needs a label that potentially sets them apart from other children. People in general are simple-mind, and children believe that "diseases" are contagious and this could potentially allienate a, or all intents and purposes, "typical" 4 year old who just has different dietary requirements.

    Honestly, I don't know what all this business is about "awareness". WHY? Does "awareness" solve the problem? Do the benefits of "awareness" outweigh the risks? Sorry, I think if it's someone's business, then I would let them know otherwise, I usually just say "my son needs to be on a special diet...metabolic reasons" and leave it at that.

  3. Ok, so, if your child were having diabetes, you would not name it ?
    Not naming the syndrome and keeping it secret sends the message to the child that because he has a rare disorder, it should be kept secret because it's a shame to have a rare disorder.
    My point is that you fear for your child to be different with the label is projecting your issues about this label on your child.
    You see the problem as the other children, but the problem comes first and foremost from adults, then it goes to the children. Not the reverse.

    And about contagious disease or such, it is fully in the field of awareness. Awareness permits to explain that PWS is absolutely NOT contagious, thus the other children cannot catch it, and that they can help by not giving sweets.
    The more we spread the info about these kind of disease, the more people will know and the most likely stigma ends.
    After all, if a child has diabetes, or asthma, or coeliac disease, or HIV/AIDS etc...., we explain to children that they can't catch it like a flu. The same holds true for PWS.

    And it's not because they have a "PWS label" as you like to call it that they are really as different as a child with diabetes or a coeliac disease. Not naming the illness doesn't make it disappear, not at all. After all, even if he has a rare disorder, you have many children with chronic conditions, and you cannot prevent your child from being in the same situation.
    You are not absolutely powerful to prevent your child from feeling different to the other children, you can't fix this issue.
    An illness is an illness, and it doesn't stop the person from being the person they are. However, it's part on who they are, they need some help about it, and it's not by hiding it that you help. Instead, you prevent the others from helping : information and awareness is the first key for help and acceptance, for you and for the others.
    If you are not strong enough for it, then, you damage your child more than you damage yourself.

    On the other hand, keeping it a secret adds more stigma to the stigma. It's the best way to encourage more stigma towards this kind of illness.
    It damages your child more than yourself.

    And "metabolic issues" sounds like such a blanket advice that everyone thinks that you have issues about your child, and you want to make excuses.
    You'll see that honesty is the best policy in these issues.

    Before thinking about "your child being labeled as different", something you won't be able to prevent from whatever you do, work on yourself first and foremost about this issue. Again, the problem is not your child, but yourself first and foremost.
    Because the problem is that you don't feel comfortable to have a child with PWS, so you feel the need to hide it.
    If you were not ashamed about it, you wouldn't feel the need to hide it, Anonymous. We hide something we are ashamed about, not something we are comfortable about.

  4. Easy now... Take a breath... There is no damaging your child by not announcing from the mountain top to everyone you come in contact with that your child has this thing called PWS and explaining the entire crazy syndrome every second of your life.

    I know that Ayden Jane does not need me to do that constantly nor do my other kids need to hear it constantly. Not because they are embarrassed but because to them that is not who Ayden Jane is. My son does not discuss his asthma with everyone he meets nor does my daughter discuss hypothyroidism or me discuss my seizure history.

    Balance. Those who are truly a part of our lives, yes. They know the ins and outs of PWS and would do anything to help. Acquaintances... not so much.

    1. What I can reply to you is that between screaming from the top of the mountain that your child has PWS or whatever the diagnosis is and telling to someone that AJ doesn't eat cookies because she has PWS, there is a huge huge difference.
      It's not that you tell as a first sentence that AJ has PWS as soon as you meet someone else.
      But when the problem arises, like she is offered a treat she cannot have due to the special diet, you explain she has a special diet because she has PWS. So because of this special diet, she needs not to eat cookies. Period.
      You don't linger on explanations, but you provide a matter of fact explanation. You give a short and precise explanation, so it stops worriness, judgment, fears... when you name the stuff.

      How do you think that people under ketogenic diet, gluten free diet, or any kind of diet, explain why they have to follow their diet ?

      My point is not shouting on the mountain that she has PWS, to the entire world, even for someone she says just "Hi". No no.

      My point is when you are asked why can't she eat cookies, naming the ghost PWS makes it much easier for people to understand the how (no cookies, so the special diet) when it's linked to a why (here, the PWS).
      Simple, matter of fact info, because AJ cannot do something because of a condition. Nothing else than a matter of fact info.
      It's very different than shouting from a mountain that she has PWS. As unbelievable as it seems.

      When I take my medicine for ADHD with other people, and they ask me why do I need to take a medicine, and even with acquaintances, I tell that I take this medicine because I have ADHD, so I need a medicine for it. Period. (the same would hold true for asthma, or any other disease)
      I don't linger on explanations, I don't justify myself.
      After this, we move on. We don't stay on it all the time.
      And when we stay on it, when a person wants to know more about ADHD, I am always glad to share the info.
      But it comes naturally, no lingering on justifications, nothing like that.
      And it doesn't mean explaining the whole syndrome all the time. After all, someone with diabetes who replies that he has a special diet because of diabetes doesn't explain the whole mess of it all the time. Neither do I with my own ADHD.
      The same holds true with PWS. Stay simple and matter of fact, and telling someone that AJ doesn't eat cookies because PWS forbids it is a simple and matter of fact sentence (more matter of fact, it doesn't exist). I promise you that it's completely different than explaining the whole story of the syndrome to everyone.

      It's very different than screaming on the top of the mountain that I have ADHD (or AJ has PWS).

      I know it's difficult to grasp, but it's essential.

    2. I didn't say neither to scream from the top of a mountain that AJ has PWS, nor to explain the whole story of the syndrome.
      It's completely different with what I advised you.

      I just said that you give a simple, matter of fact info, on why she cannot eat cookies. AJ cannot eat cookies because she has PWS. Period. Simple, matter of act info.
      You don't linger on justifications, even less explaining the whole story of the syndrome. It's the total contrary on what I told you earlier.
      You tell it, then move on.

      How do you think that someone else explains their special diet, gluten free, diabetic, ketogenic.... ??
      "I eat gluten free because I have coeliac disease, or allergy to gluten", the same holds true for other special diets.

      When I take my ADHD medicine with acquaintances, I say that I take my medicine because of ADHD. Period. No lengthy explanations, no justifications.
      A diabetic doesn't explain the whole story of their illness when they answer why they have a special diet : "because I am diabetic" is largely enough. The same holds true for PWS : telling that she has a special diet because she has PWS is largely enough.

      Contrary to what you believe, people won't ask you to linger on explanations about the crazy story of this syndrome.

      In a few words, don't torture yourself about finding a way to explain to people why she doesn't eat cookies.
      Simple is best, and telling that "she doesn't eat cookies because PWS forbids it" doesn't oblige you to give lengthy explanations about the crazy story of the syndrome.
      It's also completely diferent from screaming it from the top of the mountain that AJ has PWS.