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Thursday, February 7, 2013

Why is Food So Important, Anyway—It’s Just a Snack?


Think about a time when you felt like you were starving.  Maybe you didn’t eat all day.  Maybe you fasted for a few days.  Remember what it felt like in the pit of your stomach—that gnawing, empty feeling and the growls.  Think about your attitude and focus.  Were you distracted?  Were you tired?  Were you grumpy or even angry?  Was your patience lacking?  Could you focus easily?  Did you think about your next meal?  Did the knowledge that you were going to get to eat again at a specific time help you get through the hunger?  Maybe you contemplated exactly what you were going to eat and when you were going to get to have it—that’s how you pushed through.

Now imagine that in the midst of that gnawing hunger people expected you to focus on a specific task before you.  You were expected to pay attention to lectures and instruction.  You needed to learn new skills, are challenged with new ideas and reprimanded when your attention wanders.  Imagine that the one thing that allows you to stay focused, pay attention and try your best is the knowledge that soon you will get to eat again and have some relief from the hunger pangs.  You know that at exactly 9:45 you will have a granola bar—you can make it to 9:45.  Or at 12:00 PM you will have a large salad with your favorite dressing—you can get through a lecture because you know that salad is waiting for you at exactly 12:00 PM.

Now imagine 9:45 arrives and there’s no granola bar.  Or after your days of fasting, you’re told that lunch you’ve been waiting for is going to be postponed—it won’t be at noon; there is no exact time forecasted.  How would you react?  Might you be angry?  Might that gnawing in the pit of your stomach overwhelm you and cause you to break down in despair?  Might you become fearful that the meal you are waiting for isn’t going to be what you’ve been hoping and depending on, or might not arrive at all?

Now imagine, on top of all that, you’re on a diet.  When you finally do get to eat, you’re only allowed to consume less than half of what your peers get.  At meals, you’re surrounded by others who are eating bigger portions, tastier, more fat-laden food, desserts, sugary drinks…eating until they are sated.  You never get sated.  Imagine while you are trying to focus and hold out for that next meal, you see food all around you that you cannot have; you see others eating what they want, when they want it.  Would it be easy to avoid distraction?  Would you feel left out at social gatherings, parties and meal times?

This is the moment to moment struggle for Cainan, who experiences Prader-Willi Syndrome.  PWS causes him to feel virtually unending hunger, no matter how much he eats.  His only relief is a very brief period of time while he is eating and perhaps a few minutes afterward.  Cainan functions very well day-to-day because we have created an environment of food security for him that began in infancy.  He knows he will always get breakfast, a morning snack, lunch, an afternoon snack, dinner and an evening snack.  He knows what time those meals come.  He usually knows what he’s going to eat.  This gives him peace and confidence.  This allows him to focus on other tasks because he knows he doesn’t have to worry about getting to eat and having relief from the hunger. 

This hunger is why Cainan’s first question when a plan changes is: “Will I still get lunch?”; “Are we still going to have snack on time?”; “Will there be food I can eat there?”.  If you were starving, where would your focus be?  This is why missing a snack can be devastating to his emotional state, concentration and ability to carry-on like a typical person when they miss the opportunity to eat a small tidbit.  To him, it’s not a small tidbit—it is a lifeline.  

Why is food so important?  Put yourself in Cainan’s place and ask the same question.

18 comments:

  1. Thank you very much for this post! This is a perfect description of the overwhelming hunger, and the need for Food Security!

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  2. This is great. My daughter is 12 with PWS.

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    1. Thanks! Hope your daughter is doing great :-)

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  3. Great post. After the day I have had I so understand!

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    1. I'm sorry you had a rough day. Hope it gets better tomorrow!

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  4. This is a wonderful post....thank you! My daughter with PWS is 5 months old so we are still in the failure to thrive stage, but this post is so helpful for us as we look to the future and how we can help her.

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    1. I'm so glad you found it helpful! You have a wonderful adventure ahead of you. Blessings to you and your daughter; may she amaze your socks off as much as our son has! :-)

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  5. So true. Our world revolves around food security in order to help Jackson be his best. No detail is overlooked when it comes to food. Thank you for sharing. Robin Mom to Jackson age 7 UPD

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    1. You're welcome! Thanks, for reading. My son with PWS is 8. :-)

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  6. Thanks, for sharing this Heather! How true for us as well. I homeschool our son, and the food schedule must be in place, and stuck to. He watches and waits for the appointed time, and even then, he still wants an almond or a stick of gum, etc. I would like to share this on my organic blog, if you don't mind:-) Blessings~Kim http://www.hskfnaturalfamilies.com

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    1. I don't mind, Kim, as long you provide a link back to the original post. Thanks, so much! We definitely use gum as a helper to get through to the next meal, too. :-)

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  7. What a brilliant post! Several parents of children with PWS have told us that they've printed it out, brought it to their IEP meetings, and that it's made a huge difference. Your post has caused many "Aha!" moments where teachers/family members finally 'get' the food issues that go along with PWS.

    We're featuring your post on our Facebook page today. We thought that you & your fans would want to know.

    View the post here: http://on.fb.me/H7dL6R

    Best wishes,
    The PWS Research Lab at Vanderbilt University

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    1. Wow! Thanks, so much! I'm glad it is something that has been helpful...that was my whole intent when writing it :-)

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  8. Heather, your post and the blogs that have been posted gave me some really great ideas. My daughter (age 7) has really been struggling at school. I emailed this blog to my daughter's teacher and special education teacher to let them know about the good ideas suggested on your blog. My daughter's behavior the last couple of weeks have really been getting worse and I think trying gum in between meals is a great idea. I will look into trying that. It is awesome to be able to get ideas from other families that are struggling with the same problems. I will be checking your blog again. Thanks and God bless. -Alysa

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    1. Thanks, Alysa! I'm glad it's a help--that's why I post :-)

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