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.
Thank you very much for this post! This is a perfect description of the overwhelming hunger, and the need for Food Security!
ReplyDeleteThanks! I'm glad you like it :-)
DeleteThis is great. My daughter is 12 with PWS.
ReplyDeleteThanks! Hope your daughter is doing great :-)
DeleteGreat post. After the day I have had I so understand!
ReplyDeleteI'm sorry you had a rough day. Hope it gets better tomorrow!
DeleteThis 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.
ReplyDeleteI'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! :-)
DeleteSo 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
ReplyDeleteYou're welcome! Thanks, for reading. My son with PWS is 8. :-)
DeleteThanks, 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
ReplyDeleteI 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. :-)
DeleteWhat 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.
ReplyDeleteWe'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
Wow! Thanks, so much! I'm glad it is something that has been helpful...that was my whole intent when writing it :-)
DeleteHeather, 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
ReplyDeleteThanks, Alysa! I'm glad it's a help--that's why I post :-)
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