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Saturday, February 16, 2013

A Trip to the Sierras

This week we're hitting the road and heading to the Sierra Nevada Mountains to do a little exploring.  I grew up in the area and took for granted all the amazing history--natural and cultural--that makes up the Central California mountain range.  We learned about the history of California as part of our yearly social studies curriculum in school--which included lots of field trips to California's many natural wonders.

Since the boys know nothing about this area, I created a short PowerPoint for the long road trip.  I've downloaded it to our iPads so we can all read it together (like a storybook) and, hopefully, generate some excitement and interest for the places we're visiting.  I'm also hoping it will generate lots of questions and conversations. 

Here's short video slideshow of the presentation.  If you happen to be heading to the area and would be interested in using the PowerPoint (or adapting it for your specific trip) just let me know in the comments.  I'd be happy to e-mail it to you!

Friday, February 8, 2013

Cainan's IEP Presentation

I never realized the importance of having Cainan participate in his IEP until after I began attending Partners in Policymaking.  Last year, Cainan did a short presentation during his IEP, as well as his placement meeting at the end of the year.  His desire to be in a general education class with his peers and attend the same school as his brother, was an important part of the placement decision.  Now, we always talk to Cainan about upcoming IEP meetings and topics we have to discuss.

Cainan's IEP meeting for this year was on Thursday.  This year Cainan talked about how much he has enjoyed going to his school, what he identified as goals he wants to work on and what accommodations he likes, as well as his desires for next year.  Here's a video of him running through the presentation before his meeting: 

His presentation always makes a big impression on the team and I'm so proud of him for being involved and sharing his opinion.

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.