Tips for Parent's of PKU Kids

Tips for Parent's of PKU Kids

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Tips for Parent's of PKU Kids


August 30, 2010 in Uncategorized

Don’t call eating something that they shouldn’t "cheating." For me, it created a real sense that I was a bad person, that I was a cheater. Instead I recommend calling it eating something that will harm them or will make them sick. To me, it gives the child a sense they have done something that can hurt them without the potential of creating a sense they are a bad person morally. Involve the kids in decision-making. Make them feel as if they have some choice in their lives. There are some things where they don’t have a choice; but for those things where they do, make them a part of the decision. Although throughout this I have always called it a diet and probably always will, I think we should try to start calling it a PKU lifestyle. I know that there is more than one definition of the word "diet". Even though I know the intended meaning of the word in this case refers simply to what is eaten, in today’s society it is difficult not to think of it in terms of one its' other definitions. With the way society treats diets, it connotes something that isn’t permanent. It is something that you go on and off. The word lifestyle creates a sense of permanency. It is a way of life, not a diet. Don't be too strict with the kids. While effectively maintaining the PKU lifestyle is vitally important, it can create an opposite effect if overstressed. I believe one of the reasons I went off my diet was that my parents were so strict with me when I was little. The only thing I could do was to swing in the opposite direction. Though it may sound like it, I am not blaming my parents. So much more is known about PKU now then when I was a kid. There are so many things my parents and I thought I never could have. But now we know I can at least have them in moderation. It is a different, better world today than when I was younger. My parents did the best they could with what they had. Though I may be biased, I think they did a great job.

3 Reviews of Tips for Parent's of PKU Kids

  1. Registered: Jun 27, 2009

    Posts: 0

    , New York

    Thanks so much for the advice! I never really gave much thought about calling it cheating (Molly is only 10 so we are not there yet), but I do know that the words we use can have such an impact on our kids in ways we do not even think of. I know Molly’s pet peeve is when people call food “regular” and PKU food. (We call it high and low protein in our house so that there is not a negative connotation to the foods that she eats.) It does not sound like you are blaming your parents at all – you are sharing your experiences so that we (as parents) can benefit from them. The bottom line is that we might know the work involved with the diet, but we do not know what it is like to live with PKU. We learn so much from adults with PKU and greatly appreciate your willingness to share with us.

  2. Registered: Apr 24, 2009

    Posts: 0

    Cornwall, New York

    Great insight… I agree with what you say about using the word “cheater.”

  3. Registered: Aug 27, 2010

    Posts: 0

    Plainfield, Illinois

    Thanks for the comments. I’m glad that my blog may help others coping with PKU.

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