Stacy Ellingen

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Stacy’s Journal:  Secondary Effects


By Stacy Ellingen, 2018-04-12

Unless a problem presents itself, most people don’t think about their medical well-being on a regular basis.  Sure, people try to stay healthy by doing things such as eating right and exercising, but, unless something feels wrong with our bodies, we normally don’t think about what could go wrong or what we would want done if something catastrophic were to happen.  People with disabilities are no different.  Granted, we often have some extra baggage to deal with (cares, medications, accommodations, etc…), but most of the time, those things become second nature to us—we don’t even think about it

Some disabilities and health conditions are progressive which means the symptoms of the condition get worse as time passes and the effects are eventually terminal.  Fortunately, cerebral palsy isn’t considered to be progressive.  I’ve read in multiple articles that the average life expectancy for somebody who has cerebral palsy is around 70 years old.  Although, cerebral palsy itself doesn’t get worse, people often develop secondary conditions due to cp.  Research also points out that treatments used to help people who have cp sometimes can take a toll on the body eventually leading to premature death.

A few years ago, I wrote about how I was learning to navigate my way through the health care system.  In that entry, I shared a little bit about how I had started having some health issues.  In summer of 2012, I had a Baclofen pump surgically inserted which helps relax my muscles.  Three weeks after that surgery, I had major emergency gastrointestinal surgery.  Since then, I’ve had ongoing issues.  I had another surgery in 2014 and have had a few hospital stays since.  About three weeks ago, I had another emergency surgery and spent a few nights in the hospital.  I had yet another gastrointestinal issue.  Due to my past surgeries and the effects of cp, we found out that I’m unfortunately prone to having more of these types of issues and there really isn’t anything I can do to prevent it.

It’s often said that there isn’t enough focus on treating adults who have cerebral palsy.  There is quite a bit of information about treatments and research to help children with cp, but there’s not much out there for adults.  I’ve had many conversations with friends who also have cp, and many of them feel the same way—although we know cp isn’t progressive, we feel the effects of it impacting our lives more as we get older.  I haven’t done much research lately, but I haven’t seen anything recent on how cp effects the aging process.  It’d be interesting to see studies done on that. 

Like everybody else, each time I go in for surgery, I have to answer those dreaded questions.  What measures do you want taken to keep you alive?  Do you want to be on life support?  Questions such as those aren’t the easiest to answer especially when you’re headed into emergency surgery.  I understand why the questions need to be asked, but, regardless of the situation, they are never easy to answer.

Often times, people, especially those with disabilities and health conditions, are encouraged to have a Power of Attorney of Healthcare on record at the medical facilities they use.  The purpose of the medical POA is to give health care professionals guidance as to your wishes in case you’re ever in a medical condition where you’re incapable of making those decisions yourself.  You can designate two or three people who you would want to make decisions for you and on the form you can answer specific questions about your preferences for sustainability.  People should have the medical POA on record, but a licensed doctor must “activate” it if a situation arose.  Ashamedly, I admit, I have yet to get mine on record.  Every year, during one of my screenings for IRIS, I’m asked if I have one on record.  I’ve had the paperwork printed out for three or four years.  It’s just a matter of filling it out, getting signatures, and sending it to my medical providers.  What’s the hold up, you ask?  Well, aside from finding witnesses (they can’t be family members) to sign it, there’s a psychological aspect to it.  It’s obviously a sensitive issue to begin with, but, for me, it brings up another issue.  For most people my age, their next of kin or their designated person would be their significant other.  Thankfully, I have great family who have agreed to be my designated people, but there’s something about putting it on record that just makes me feel hurt.  I know I need to get it done though.

When I was young, I had no idea secondary health issues were come among people who have cp.  Dealing with health issues definitely isn’t fun, but it’s part of my life and something I’ve learned to deal with.  Having to make tough decisions about “what if” situations isn’t easy either, but I guess that’s called being an adult.  While, at times it isn’t easy to do, I try not to let my issues get in the way and live life to the fullest.  That’s all we can do, right?

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Is it safe to go anywhere anymore?  Regardless of political beliefs, it’s a question is on many people’s minds lately.  Years ago, questions about safety weren’t very prevalent, but due to recent events, we have no choice but to consider “what would you do?”.  As unbelievably disheartening as it is, we have to think about what we would do in a violent situation.  While most people would know what to do (generally speaking) and could physically react to the situation, people with disabilities and health conditions don't have the ability to try to protect themselves.  Truthfully, we, people with disabilities, are among the most vulnerable in violent situations.

I’ve been watching the news coverage of all the horrific events going on, but I hadn’t really ever thought about what I would do if I was in a shooting situation until a friend tagged me in a Facebook post.  The post was written by a teacher in Ohio.  The day after the Florida school shooting, the teacher got the dreaded question from a student—“what will we do if a shooter comes in your room?”  The teacher explained that she cares about her students very much, but since she was in a wheelchair she couldn’t protect them like an able-bodied teacher would.  She told them to escape if they could and not to worry about her.  A student in a class then explained that they had already discussed it and if anything would happen they would carry her.  That post touched me on so many levels.  As I’ve explained in previous entries, if my circumstances were just a little different (mainly if I had the ability to speak), I would have been a teacher.  It made me think about how I would have responded to the question.  I would have said the exact same thing.  Of course, I’d want my students to escape if they could rather than worrying about me.

The post also made me think about other situations.  Unfortunately, these awful things seem to be happening all over the place in today’s world.  I’m blessed to have the cognitive ability to know what was happening, but physically, I wouldn’t be able to do much to protect myself or others.  I could move my wheelchair around, but I’m unable to get out of my chair myself.  I can kind of cover my head with my arms, but with cerebral palsy in exciting or stressful situations my body tends to really tense up.  I can only imagine how tense my muscles would be in a situation like that.  Oftentimes, under dangerous circumstances, you are supposed to be as quiet as possible.  For me, the harder I try to be quiet the more noise I unintentionally make.  It’s just the way my body unfortunately works.  Also, many times in those situations, herds of people often run to escape danger.  When a person uses a wheelchair or another mobility device, it’s often very difficult to navigate through a crowd of people. 

Those with mobility limitations aren’t the only ones more at risk in those violent situations.  People with intellectual disabilities may not understand what’s going on in dangerous circumstances.  This could cause behaviors that could provoke the situation even more.  Screaming and lashing out could attract the suspect’s attention.   Depending on the circumstances, running could also cause danger.  Some people with intellectual delays may not understand the importance of following directions under the circumstances.

It’s troublesome to me that this even has to be a topic of conversation.  As a person with a disability, it’s my reality that I’d very vulnerable in if I was ever in a violent situation.  Like most people, I’d rather have others save themselves than risk their life helping me; however, I truly believe most people in this world have a good heart and would risk their own life to save others.  It’s getting to the point where it’s a risk to even leave our homes, but we can’t let a few bad people ruin life for the rest of us.  Although, at times it’s hard to believe, the good still outweighs the bad in the world, and we have to continue living life like we always have.  If we put ourselves in a bubble, we would conceding be to those few evil people, and we don’t want to do the that! 

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What would the world be like today without cell phones or mobile devices?  It’s nearly impossible to fathom.  We, as a society, have become dependent on these devices for nearly everything we do.  We use cell phones for everything from getting travel directions to ordering dinner to be delivered.  The capabilities of mobile devices are endless.  Some people feel that we are “too connected,” but for most people, their cell phone is like another body part.  For many people, including those with disabilities, mobile devices have become a real lifeline.

When cell phones became popular in the late 90s, I never in my wildest dreams thought I’d own one—let alone depend on one.  Due to my limited fine motor and speech abilities, having a cell phone didn’t seem beneficial to me.   I remember my mom was the first in our family to get one.  She had to get it for work and she merely used it to make and receive phone calls.  It was so big it barely fit in her purse.  Funny to think that that was only about 20 years ago.  How times have changed! 

It wasn’t until midway through my second year of college that I got my first cell phone.  My parents got it for me for Christmas and thought it would be good for me to have in case of an emergency.  I could call one of them or my sister, and, even though I’m nonverbal, they knew my speech and schedule well enough to figure out what I needed.  My first phone with a stick phone (back then, most phones were flip, but since it had to be my tray, I couldn’t use those).  It also had to have protruded buttons because I couldn’t press ones that were sunk in.  Finding a phone like that wasn’t easy.  My first phone was velcroed on to the mount for my communication device.  As I explained in a previous entry, unless I was going to class, because it was so bulky I normally didn’t have my device on my chair; therefore, I really didn’t use my phone very much when I first got it.  Eventually, I figured out that I could call my friends and they could pretty much figure out what I needed because again they knew me so well.  Actually, I remember I had a lot of night classes, and if they got out early, I’d call a friend and she knew I needed her to call the transportation service to come pick me up early.  It worked pretty well.

It wasn’t until a year or so after getting my first phone that I realized that I could text.  I was playing on my phone waiting for my Art History class to start and I found the text message option.  I texted my sister asking when her knee surgery was.  Back then, I didn’t even know there was word prediction on my phone, so I typed the message out using the number keys.  We didn’t realize it at the time, but sending that message changed my life.  Because of my limited fine motor ability (I do everything on the computer on an enlarged keyboard with a keyguard using the last two fingers of my left hand), nobody ever thought I’d be able to text.

While I’m sure I did to some extent, I don’t remember texting nearly as much in college as I do today.  For me, it was definitely an access issue, but I also don’t remember texting being as popular it is today.  After graduating, when I moved back in with my parents, my dad figured out a way to mount my phone to my wheelchair.  Thankfully, he’s a pretty handy guy and used a footplate from an old wheelchair to create a phone mount that fits right by my joystick.  Needless to say, having my phone on my chair has changed my life! 

After my first phone, I went through two or three more button cell phones.  By then, touchscreen phones had become popular, but again because of my fine motor limitations and spasticity, nobody, including myself, thought I’d be able to use a touchscreen phone.  After realizing button cell phones were going to quickly become nonexistent, I began looking at my options.  After playing with other people’s phones, I surprisingly realized that I could maneuver touchscreen phones pretty well.  I’m now on my third touchscreen phone and I absolutely love it!  Somehow, I’m blessed with double-jointed thumb which I use to do everything on my phone with.  I don’t even use an enlarged keyboard!

Much like everyone else, having a smartphone has opened up a world of possibilities for me.  I do everything from emailing, to checking Facebook, to surfing the web, and playing Words with Friends on it.  I also text a lot.  Undoubtedly, most adults my age text, but, since I’m nonverbal, I use texting in place of talking to people on the phone.  I text if there’s an emergency; I text if I need help; I text if I have a question; and I text if I just want chat.  Friends and family know that’s the best way to get ahold of me.

Like most people, I have lots of different apps on my phone.  Everything from ESPN to The Weather Channel, I have the popular apps.  In addition, though, I have some apps that are unique to my circumstances.  One of the apps is an emergency app which just a simple text box that has basic information about me and tells about my disability and explains how to best communicable with me.  If I would get stranded somewhere, I could open the app and have people read how to help me.

The second app that really has made a huge difference for me is Proloquo2Go.  It’s the communication app that I’ve had on my iPad for a few years now.  I didn’t realize I could have the app (it’s a paid app) on more than one device until late last summer.  I was playing around on my phone, and I tried installing it.  I was so excited when it worked!  Although I still don’t use the app like I’m supposed to (I don’t do much programming unless I have a presentation or something), I still use it to spontaneously talk to people.  I type out what I want to say and it speaks.  It’s really cool because now I have a communication on my chair that I effectively use because it doesn’t get in my way!  Who would have ever thought that a regular touchscreen cell phone would be the answer?  I only wish we’d have discovered this years sooner!

Lastly, my parents got me a video doorbell for Christmas.  It’s kind of scary to think about, but for years I had been opening the door to my apartment without knowing who was door.  I have a power door and when the doorbell would ring, I’d press the opener on my chair to open it, but I wouldn’t know who was there.  Being nonverbal and in a wheelchair makes me pretty vulnerable—it’s just a fact of life.  This new doorbell works off my WiFi and when it rings, I get a video of who is there on my phone that--so I’m able to see who is at my door before I open it.  It’s really cool and makes me feel much safer!

So, for someone who didn’t think she’d be able to use a cell phone to now completing relying on one to help her live independently, I’m very thankful for the evolution of cell phones.  I think we’re just at the tip of the iceberg with technology; I’m excited to see what’s next! 

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Stacy’s Journal:  Comparisons


By Stacy Ellingen, 2018-01-07

“Don’t compare yourself to others“.   It’s something most people are told beginning at a young age.  When people compare themselves to others, it’s often either to invoke pity on himself/herself or it’s to make him/her feel superior over someone else.  Though we are told not to, it’s nearly impossible not to compare ourselves to others.  It’s human nature.  There are several different facets that people compare to.  Whether it’s economic status, sexual orientation, religious preference, physical appearance, lifestyle preference, or something else, comparing is something most of us do on a daily basis.

People with disabilities are no different.  I can’t speak for others with disabilities, but I probably compare myself to others more than most.  Since my disability only affects my physical abilities, as I’ve said before, my expectations of myself coincide with what my friends without disabilities are doing.  As I’ve written about in past entries, growing up my parents had normal expectations of me.  Sure, some of them were modified, but, basically, I was expected to do what my peers were doing.  Those normal expectations continued through college, and, even finding a job.  It’s because of these high expectations that I’m as successful and independent as I am today.

However, after college, I began to notice that I wasn’t keeping up with my “normal” friends.  Things such as finding significant others, “moving in together,” engagements, weddings, and pregnancies were and continue to be happening to many of my friends.  Like I’ve said before, I’m very happy for them; I just wish those things would happen for me.  Even though I have those expectations for myself, others don’t.  I’ve heard things like, “honey, we don’t expect you to get married,” and “if it happens, great, but if not, that’s okay too,” from close family members.  While I understand where they’re coming from and I’m grateful to know that my family doesn’t care if those things never happen to me, it also makes me sad that those normal expectations stopped.  I’ve discussed this with a friend who has very similar circumstances (and whose family feels the same way), and we agree it’s an interesting conundrum.  We wonder why those normal expectations stopped for us, but, yet, in our hearts, we know and understand it’s because our families want us to know that it’s okay with them if we don’t accomplish those monumental milestones in life.

That being said, it doesn’t stop me from comparing myself to others.  Like many people, I find myself comparing my life to others when things aren’t going right.  When things aren’t going right because of having a disability (my wheelchair breaks down, staffing problems, health issues, etc…), I often think about what my peers have going on.  Of course, during times such as those, in my mind, everyone else unrealistically has a seemingly perfect life.  An example of this happened in December.  I was having problems filling my care shifts for January.  One night I was really frustrated and told my mom, “Everyone else is worrying about what to get their kids for Christmas while I’m sitting here wondering who’s going to get me out of bed in January.” Obviously, I was venting out of frustration which does no good, but it goes to show how I sometimes compare my life to others.

Oftentimes, comparing ourselves to others is irrational; however, there are times when it can boost one’s self-esteem.  While it’s not a very kind thing to do if one is boastful about it, comparing yourself to others who have similar situations can boost one’s confidence when realizing how well you’re doing compared to someone else.  Of course, it could work the opposite way too.  If you witness someone with similar circumstances doing better than you, it likely will cause some mixed feelings.  In that case, you may have some bad feelings about yourself, but it also will hopefully make you want to improve.  I sometimes see this in the disability community, and it’s not necessarily a negative thing.  At least for me, when I see someone with similar circumstances succeeding at something, it makes me want to at least try it.  Seeing people who have similar abilities accomplish amazing things ignites a spark in me.  I can only hope I do the same for others.

Whether we realize it or not, comparing ourselves to one another is a part of life.  Oftentimes, comparing ourselves does no good, but sometimes it can ignite a spark in us and make us realize what is possible! 

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Stacy’s Journal: Dare to Dream


By Stacy Ellingen, 2017-12-03

Everyone dreams.  When people dream, amazing things happen.  People do the unthinkable in their dreams.  A dream can be funny, scary, inspirational, enlightening, and motivational.  Dreams can be a source of hope, but they can also be a reality shock when you wake up and realize it was truly just a dream. 

Once in awhile, I get asked if when I dream, I’m in a wheelchair or not.  Fortunately, for me, in the dreams I’ve always had a disability.  I don’t remember many of my dreams, but from the ones I do, I never recall being “normal.”  I’m thankful for that because I think it’d be hard to wake up from a dream where I didn’t have a disability, and realize it was truly just a dream.

For whatever reason, it seems like I have memorable dreams during stressful times like the holiday season.  This happened three or four years ago, but I still remember the dream as clear as day.  I dreamt that I walked down the hallway of my elementary school.  It wasn’t a normal walk; I had leg braces on and I was teetering, but I walked independently down the hallway.  I remember for some reason my confirmation leader was there, but I unfortunately don’t remember anything else.  I have absolutely no idea what brought that dream on, but I find it very interesting that it was so vivid.  I wish I hadn’t woken up so quickly, so I could have “seen” what else happened.

I’ve also had dreams where I’ve been in a relationship with a significant other.  I think these dreams are brought on by upcoming gatherings with family and friends.  As much as I try to be ok with being single, when I’m around family and friends who have seemingly perfect relationships, it’s human nature to desire that as well.  When I dream that I’m in a relationship, I still have Cerebral Palsy, but the significant other usually doesn’t have a disability.  While dreams like these are fun to occasionally have, as one would guess, they aren’t the greatest to wake up from.  It can be a pretty big reality check when you realize it was just a dream. 

I’ve had friends and family members tell me that they’ve had dreams where I’ve all of a sudden gotten up and walked or said something perfectly.  Years ago before she passed away, my grandma told me about a dream she had.  Her sister who passed away and I were in it.  Out of the clear blue, I said three words as clear as possible.  The words were “I love you.”  My grandma couldn’t believe it.  She was so excited to tell my grandpa in the morning.  I find it fascinating that my friends and caretakers have had dreams where I’ve stood up and walked or randomly verbally said something perfectly.  Dreams like those must be awesome to have, but I don’t know how I’d react if I a dream like that.  I think it’d a be reality shock.

It’s always fun to dream.  I never knew what it’s like not have a disability, so I don’t usually see my disability until I’m faced with challenges related to it.  In my dreams, it seems natural to me that I have Cerebral Palsy because I’ve always have had it. As much as I’d love not having a disability, I do and it has become part of life that I’ve learn to accept. 

We all dream every night.  Dreams energize our imagination.  They give us a glimpse of what in some cases is the possible.  It’s nice to dream, but we have to remember it’s truly just a dream!

 

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Stacy’s Journal:  Bias, We All Have It


By Stacy Ellingen, 2017-11-14

Most children are taught not to discriminate or segregate at a very young age.  Regardless of age, race, religious belief, sexual orientation, economic status, or disability, as a society, we are made to believe that everyone is equal and nobody is the better than anyone else.  In theory, all types of people should be mixed together all the time.  While thanks to laws passed in the 1950s, this notion should be technically true, but it isn’t realistic.  Segregation still happens in today’s world.  People may not realize it, but we all have bias.  When most people hear the word “segregation,” they automatically assume it’s a negative thing.  However, at times, that’s not the case.  It’s human nature for people to associate with others like them.

As I’ve shared in past entries, I was brought up believing I should do everything like everybody else despite having a disability.  Obviously, there were things I wasn’t able to do, but that was life.  Attending therapies isn’t a normal activity for most families, but it was for mine.  My parents did whatever they could so I could participate in normal childhood activities.  My dad adapted hundreds of things so I could use them.  My mom was a Girl Scouts leader so I could participate in activities.  My parents never put me in respite; instead, I had regular baby-sitters.  I never went to special needs camps; I went on vacations across the US (and beyond) with my family.

The only time that I was classes with other kids with significant disabilities was when I was in Early Childhood classes when I was really young.  From Kindergarten on, I was in all regular education classes.  Some years, I had with a modified gym class where there were other students with all types of disabilities  and health conditions, but that was it.  Since my disability is so apparent, I made a very conscious effort to try not to associate with students who had intellectual disabilities—especially in high school.  That sounds really bad of me, but it was so important to me to do all that I could to prove my cognitive abilities to my classmates.

When I got to UW-Whitewater, obviously that all changed because Whitewater is known for serving students with disabilities.  There was no need for anyone to prove their cognitive abilities since we were in college.  It’s true; people with similar circumstances tend to befriend one another.  I made friends with people who had various disabilities, but I also had friends who didn’t have disabilities.  It was when I first really realized that there were other people who had similar abilities.  It was also the first time I got involved in disability advocacy.  Whitewater had a student organization for disability advocacy.  It was the first time I was a part of something that focused on disabilities.  Again, students with and without disabilities belonged, and there wasn’t a need to prove anything to anyone.  It was a cool experience.

It wasn’t until after college that I realized just how seemingly segregated adults with disabilities are.  Everything from finding appropriate cares, to finding an apartment, to finally landing a job, it took lots of time and effort.  There are lots of services available for people with disabilities, but the reality is that most of them are geared towards people with intellectual disabilities.  Yes, most services are customized to the individual, but generally speaking I’ve found that many of the services were developed for those who have intellectual delays.  Those of us with physical disabilities like myself often have to pave our own path and piece together services to meet our situations.  While personally I’m happy I can do this, sometimes it does get frustrating that it seems “people with disabilities“ get thrown into a general category.  In no way am I belittling people who have intellectual disabilities, but, for me, especially since my speech is affected, people assume that I have cognitive delays.  As one would guess, this can be incredibly frustrating.

Services aren’t the only thing like this; many of the disability conferences and trainings are more for those with intellectual disabilities.  This by no means is a negative thing, but, personally speaking, I find it hard to fit in at those events.  A lot of it probably has to do with the fact that while I obviously understand and accept that I have a disability, I normally don’t think of myself as being different; I don’t focus on that.  I’m also not used to being with lots of people who have various disabilities.  Recently, I attended the Self-determination Conference.  I worked the exhibit table for InControl Wisconsin.  I loved meeting and talking to so many people, but, even before we got there, on the way there, I told mom it was segregation.  Again, it doesn’t mean it’s a negative thing.  It’s just a fact that people with all types of disabilities were gathering in one place.  I personally again felt the need to prove my cognitive ability. In my opinion, a lot of the events and activities were meant more for people with intellectual disabilities.  I understand that it’s the majority of people who attend these events, so it has to be catered to that population; sometimes, I just wonder if I should be there.

Thanks to my amazing family and friends, I don’t usually think of myself as having a disability; I know people I love see past my challenges and see me for the person I am.  People with disabilities in general are in a minority; those of us with physical disabilities are even fewer in number.  We just have to continue fighting for what’s right and paving new paths!

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As the saying goes, “family is forever.”  Every single human being on Earth has some sort of a family.  Obviously, there are several different kinds of families.  Whether it’s blood relatives, a church family, a family of friends, or another combination of people, families are what get us through life.  Family members celebrate the good times together and are there to embrace one another during the difficult times in life.  In past entries, I’ve discussed how my disability affects my immediate family (my mom, dad, and sister).  I’ve also shared about how I’ve been blessed with an amazing group of friends who accept and embrace my unique circumstances, but my disability also affects another group of people who I dearly love.  My extended family—my grandparents, aunts, uncles, and cousins.

My mom and dad each happen to be the oldest of four children in their families.  They were the first to get married, and they were the first to have a child.  My grandparents were filled with excitement with the expecting of the first grandchild.  My aunts and uncles were eager to meet their first niece or nephew.  As I’ve shared in previous entries, my mom had a completely normal pregnancy and I was born on my due date.  The complications happened during the last few minutes of delivery.  I can’t even fathom what it was like for my grandparents, aunts, and uncles to get that call saying that there were complications and it was unclear if I’d survive.  What an awful phone call to get—especially when they were anticipating joyous news.  In the days following my birth, my grandparents and some of my aunts and uncles came with my parents to see me in Neonatial Intensive Care Unit (NICU).  Visiting the NICU isn’t a walk in the park.  It’s a frightening place.  Even though medical professionals assured my parents that it was a fluke mishap, my traumatic birth put a scare into the entire family—especially since some of my uncles and aunts were planning to have children soon after.  Thankfully, the initial shock did wear off, and it was realized that it wasn’t anything genetic.

During the first few years, my grandparents, aunts, and uncles did whatever they could to help.  My grandparents and aunts and uncles who were in the area learned how to take care of me.  It’s not uncommon for grandparents or aunts and uncles to babysit, but my relatives had some additional responsibilities when they watched me.  That didn’t stop them though; they were always more than willing to take me for a night or weekend so that my parents could enjoy some time out.  I had one set of grandparents who lived very nearby.  Some of my best memories from my childhood are when my grandma took me to physical therapy in Oshkosh on Friday mornings (because I didn’t have Early Childhood that day) and then I’d spend the day with her and grandpa.  It wasn’t what grandparents did with “typical” grandchildren, but that didn’t matter to them; they wanted to spend time with me.

My first cousin was born when I was two or three years old.  Relief came in the family when she was perfectly healthy.  My parents were overjoyed to have their first niece; however, I think at times it was hard for them to see her meet the normal milestones like walking and talking because I hadn’t done those things and they knew I’d likely never would.  My mom has told me she remembers having to explain to me why my cousin was able to walk and talk, but I wasn’t.  I can’t imagine how hard that must have been, but I know she did it in a positive way. 

My sister and many more cousins came in the following years.  It has never been discussed in front of me, but I’m sure my aunts and uncles had to have conversations with their children about my disability.  I’m sure that they made it clear to their kids should greet and hug me (we’re a hugging type family) when they first see me.  I’m sure they were told to try to include me in everything too.  Having to explain my disability to my cousins couldn’t have been easy for my uncles and aunts—especially since there’s quite an age range among it my cousins.  Like most little kids, many of my cousins went through a stage where they were scared of me because I was visibly different, but my aunts and uncles did their best to try to encourage interaction with me.  I’m sure my cousins asked lots of questions after seeing especially when they were really young, and I can only assume that my aunts and uncles did their best to answer them. 

My grandparents and relatives continue to help as I get older.   When I went to school at UW-Whitewater, I was fortunate to have my other grandparents and an uncle and aunt close by.  My grandparents came up every week to do my laundry for me.  It was very nice to see them so often.  It also gave my parents piece of mind that if I ever had an emergency, people were close.  When I’ve had medical issues the past few years, my grandparents, uncles, aunts, and cousins have been always right there to offer support in any way they can.  I also think they realize that seemingly minuscule achievements for most are often huge accomplishments (graduating college, moving into an apartment, getting a job, etc…) for me; they understand we celebrate the small victories in my life.

As my cousins have grown up, they have gotten better about interacting with me.  Obviously, like in all families, some cousins are closer than others.  Overall, though, in recent years, I’ve noticed that many of my cousins are taking time to interact with me without being prompted to.  I can’t tell you what an awesome feeling that is.  I’m well aware that it takes some extra effort and patience to have a conversation with me.  It’s to the point where many of my cousins are dating, getting married, and having babies.  I know that my aunts, uncles and now cousins probably have to explain my circumstances to their significant others and children. Again, I know that it can’t be an easy conversation to have, but they do it because they want them to feel comfortable around me.

Having somebody who has a significant disability in a family has its challenges.  Extended family has a choice whether or not to accept the circumstances the person has.  I’m beyond blessed to have an incredible extended family who not only accepts, but embraces the person I am.  For that, I’m forever grateful! 

***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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Stacy's Journal: Weathering Storms


By Stacy Ellingen, 2017-09-11

Lately, it seems like all of the news coverage I’ve seen has been about the catastrophic storms that are happening around the world.  Back to back major hurricanes in the south, wildfires in the west, earthquakes in Mexico… it seems endless.  It’s true—disasters like these bring out the best in humanity.  The stories of survival and of people helping one another are truly amazing.  Having said that though, thousands of people’s lives have been turned upside-down.  Watching all of this has really made me think about what extra steps people with disabilities have to take when Mother Nature throws curve balls.

I’ve seen a couple of different posts on social media about extra precautions people with disabilities need to take when major storms hit.  Of course, needs widely vary depending on individual circumstances, but it’s recommended that everyone—especially those with disabilities—have a plan.  Obviously, it’s important to have things like extra food, water, and batteries on hand, but it’s often critical for people with disabilities to have items like extra generators and extra medication ready.  For people who rely on ventilators, backup generators are a must.

People who depend on others to help with personal cares needs have additional worries.  What if your care assistants can’t get to you?  How will you survive if nobody can get to you?  The answer to these questions again depend on individual situations, but it’s important that people have a backup plan in place.  People with mobility issues also need to think about how they would physically evacuate or take shelter if a major storm were to come.  It’s a lot to think about, but it’s so important to have a plan in place. 

In Wisconsin, it’s very rare that we get a real catastrophic storm.  It seems like every few years a part of the state gets hammered with a huge blizzard or a major thunderstorm/tornado.  While these storms aren’t usually too major, often times, they can cause some major obstacles for people with disabilities.  Personally, I think winter is the worst.  Between the bitter cold temps and the snow, I find it challenging to get out.  I don’t have this problem anymore, but when I was at UW-Whitewater, I never wore a coat or gloves—even in the dead of winter.  Yes, people thought I was crazy, but I didn’t have a way to bundle/unbundle when I got to class and home.  I hate being hot, so I wasn’t going to sweat to death waiting for my next care shift.  I usually got rides to/from class, but, admittedly, it wasn’t very smart.  Snow brings another whole set of challenges for people who use wheelchairs.  Sidewalks, curb cutouts, and ramps are often not cleared in a timely manner.  Depending on how much snow there is, it can be nearly impossible to get anywhere.

Summer thunderstorms and tornadoes can bring on obstacles as well.  Many people with disabilities rely heavily on electricity.  Whether it’s charging a power scooter, charging a communication device, or using it to keep a ventilator running, electricity is crucial for sustaining life for people who have disabilities and illnesses.  For me, when the power goes out, the first thing I worry about is my door to my apartment.  It’s an electronic door, so when the power goes out, I can’t open the door to let my staff in (I have a clicker on my chair that I push to open the locked door).  I do have a keybox outside of my apartment in case I’m unable to let people in, but it’s a matter of getting ahold of the person who is coming ahead of time, so they know what to do.

Tornado warnings are another interesting event when you have physical limitations.  Fortunately, there haven’t been too many tornado warnings since I’ve been living in my apartment.  There isn’t a basement where I live, so when there’s a tornado, I just go in the innermost room in my place which happens to be the bathroom.  If something were to really happen where I needed help, I always have my phone on my chair.  Another thing I have to worry about is when the weather gets bad (both in winter and summer), is whether people going to be able to get to my place to my help me.  Fortunately, I’ve never had somebody not be able to get to me due to weather conditions.  People have been really late because of the weather, but they eventually did make it.  If things were to get really bad where it was going to be really dangerous for people to travel, I’d probably make arrangements beforehand to either have somebody stay with me or to stay with someone so I could get the help I needed.

Major storms can cause havoc for everyone; people with disabilities often just have some extra things to figure out.  Planning and acting ahead of time can definitely help.  It’s known how unpredictable Mother Nature can be; it’s best to have an action plan in place! 

***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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