Stacy Ellingen

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Stacy’s Journal: Mealtime Challenges

2017-05-05
By: Stacy Ellingen
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Whether it’s a fancy restaurant or a fast food restaurant, going out to eat is a common activity for most people.  Eating is a necessity of human survival, but it’s also a very social activity.  No matter what kind of event people attend, it’s very common for eating and drinking to be involved. 

For people with some disabilities, eating can pose a variety of challenges.  Depending on the circumstances, some people cannot eat orally and have to be tube fed.   Fortunately, I’m able to eat orally.  In fact, my friends and family will say that I love to eat!  People are surprised how much I eat because I don’t gain much weight.  The reason why is because my body never stops moving unless I’m sleeping.  I do need assistance eating though.  I’m not able to prepare meals or feed myself.

Needing assistance eating has its challenges as well.   One of them being that unlike most people I can’t just grab a snack whenever I want.  When I have care shifts, I need to make sure I get enough to eat and drink to last me until the next attendant comes. 

There are a few finger foods I can eat on my own, but because of my poor fine motor skills, I often drop things on either myself or on the floor.  Sometimes, I can handle things such as string cheese, beef jerky sticks, and hard candy myself.  Though, again, those things have to be unwrapped and placed where I can easily grab them. Recently, because of staffing issues, there have been a few times where I’ve fed myself breakfast.  The meal consisted of string cheese, fruit snacks, and pretzels.  Not the most nutritious breakfast, but those are things that I kind of eat myself.  Due to an aide calling in sick late the night before and nobody picking up the morning shift (I was stubborn and didn’t want my parents to come up to help), I slept in my wheelchair one night.  The night before I had my night aide put finger food on my table for the morning, but I also had her put my morning pills on the table.  I also had her duct tape a cup of water to the table.  Now, people have to understand that I take five small pills, and having pretty limited fine motor ability, picking up these small pills and getting them into my mouth takes talent.  Somehow, that morning, I was able to get all five pills in my mouth without dropping a single one!  I think it was luck more than anything; I probably couldn’t do it again. 

Because cerebral palsy affects all of my muscles in my entire body, muscles in my mouth are affected too.  Sometimes, I uncontrollably roll food off my tongue.  Food often gets on my clothes.  When I’m at home, I usually wear a towel on my shirt when I eat or drink anything.  When I’m out to at a restaurant or in public, I try using napkins instead because it’s more acceptable. 

Having to be fed has some psychological effects as well.  My friends and family don’t have a problem feeding me in public though.  Until a few years ago, my friends and I would go out to eat all the time and they’d feed me.  Now, since most of my friends have significant others and families, it’s a little different.  I usually have my mom come to feed me because it’s just different.  I’m sure they would have no problem still feeding me, but I feel weird having them assist me when they have their own children to worry about.  It’s just one of those awkward situations.

When I go out to eat, people do stare.  It does make me self-conscious, but I try to not let it bug me.  It’s just one of those things that I kind of ignore.  Obviously, some foods are messier to eat than others.  Normally, I don’t take that into consideration when choosing what I want to eat simply because I figure I should be able to eat what I want.

 Healthwise, up until a few years ago, I had no food restrictions.  When I started having serious gastrointestinal Issues a few years ago, I had to adjust my diet.  I have acid reflux (which is common among people with cp), so I have to avoid acidic foods.  I also don’t eat fast food anymore because we It doesn’t sit well with me.  Certain textures of food do mess with my gag reflux.  For years, I thought it was just something with me, but I’ve learned others with CP have the same problem.  Things with certain textures, such as pies, yogurt, and filled donuts, I can’t eat because those kind of things make my gag reflux bad.

Many people don’t even think twice about grabbing a snack from the fridge.   For many people with disabilities and health conditions, mealtime isn’t always an easy time, but since eating is an essential part of life, we do what we have to! 

***The views expressed here are strictly those of the author and do not necessarily reflect those of InControl Wisconsin, the Network or any of our sponsors.

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