Stacy Ellingen

Category: Stacy's Journal

Stacy's Journal: Navigating the Broken System

By Stacy Ellingen, 2020-05-28

What happens if my parents both suddenly pass away? What would happen to me? What would I do? Where would I go?  These are not normal questions for a person my age to worry about, but for many adults with disabilities these are very real concerns. I recently turned 35 years old and my mom casually asked a deep question. Are you where you thought you’d be at 35?  My response was I don’t know where I thought I’d be, but I’ve learned that the system isn’t setup for a person like me. “And that’s really scary,” I added. For full disclosure, I may have added some choice words to that statement, but you get the gist of what I’m trying to say. Let me explain.

Before last Christmas, I knew I needed to hire some new caregivers because I had people moving on and students who were going on clinicals. I posted and hired some people before the holidays. Due to paperwork and approval time, I couldn’t have them start until after the holidays. As it turned out, all of the workers we just hired were no longer interested in the position. We held interviews in the middle of January. We had six interviews, but unfortunately, none of the six showed up. By that point, I was beyond frustrated. My parents and I talked, and I decided it was time to try something different.

I made the tough decision to try Family Care. My mom called the ADRC and a case worker agreed to meet with us. Leaving IRIS was the last thing I wanted to do, but I felt I had no choice. I had been in IRIS over 10 years, and had become quite involved with advocacy for the program. I loved every part of it, but I just continually had problems finding workers. By leaving IRIS, I felt like I was giving up on myself. I hated it, but kept telling myself it was for the best. I dreaded the meeting with the ADRC. Luckily, the case worker that my mom and I met with was very nice and understood my situation. We asked many questions and we learned most of the questions we had were for the Managed Care Organization (MCO) I’d choose. I chose the MCO I heard the most about from others. We filled out the transfer paperwork, but before sending it in, I asked the case worker to hold off until I told people at my IRIS Consultant Agency know what was going on. It was very important to me that I be the one to tell them what was going on because they had been excellent to me. The case worker understood. When we were doing the paperwork, very admittedly, I broke down. With tears in my eyes, I said, “I just don’t want to end up in a (group or nursing) home.” The case worker assured me that that’s a last resort.

Later that evening, I wrote emails to the people I needed to tell. Everyone was understanding of my situation because they knew the constant struggles I was having. They cautioned me to be assertive, and to not to give up all self-direction. Those were very hard emails to send because I knew I didn’t want to switch and felt like I was letting them down, but again I kept telling myself it was for the best. After I sent those emails, I gave the case worker the okay to send in the transfer paperwork. About a week later, I finally got an email from a MCO case manager about setting up a meeting. It was another week before they could meet with my parents and I. Already red flags were popping in my head because I’m not one to wait on getting things started.

A week later, the case manager and nurse came to my apartment to meet with my parents and I. We asked a lot of questions and got the process started. They told us it may take two agencies to staff my shifts. I wasn’t sure how that’d work, but I was okay to try it. I found a couple things very interesting. Family Care doesn’t allow hours for anything other than personal care and basic housekeeping chores. They wouldn’t give me hours for workers to assist me if I wanted to do anything fun such as meet friends for dinner, go shopping (for fun), or go to the movies. I could use my allotted hours to do those things, but since I wouldn’t have budget authority, there was quite a discrepancy in the number of hours I’d get (for Supportive Care). It was interesting to learn that I don’t qualify for 24\7 care unless I move into a group home or nursing home. Not that I want or need that right now, but it’s interesting that because I’m cognitively fully aware that I don’t qualify for around the clock care even though physically, I need so much assistance. Nevertheless, we proceed with putting together a plan for me.

Over the next several weeks, under their direction, my parents and I met with a few care agencies. I signed a bunch of Release of Information forms allowing the MCO to talk to agencies about my needs. The agencies we actually met with only could take a couple shifts per week and most didn’t have a reliable backup system. The case manager supposedly talked to 12 different agencies and had very little luck. All the while, I was in limbo with my current workers trying to figure out what to tell them.

The idea of having multiple agencies began to scare me more and more. I asked what would happen if an agency decided they could no longer fill the shift. The case manager said they’d ask another agency if they could do it. I then asked what happens if no one else was able to. She said they’d have to look for a place for me. I’ve been in the advocacy world longer enough to know, although its many times denied by organizations, that exact scenario happens all too frequently. I now see exactly how others with similar circumstances end up in nursing homes and group homes.

After a couple more weeks communicating with the MCO, I talked with my parents and decided to stay on IRIS for the time being.  I’m incredibly fortunate that as long as they’re able to physically take care of me, my parents will not allow me to go into a facility. This is a huge sacrifice on their part. We’ve been talking about how we both need to make sacrifices in order for this to work. They’ll be there for me as long as they are physically able, but I also need to let them travel a little bit which often means going with them. As snooty as it sounds, I often don’t like traveling as often as they do and where they do. That said, I realize that I need to let them somewhat enjoy their hard-earned retirement. We’re working on finding a happy medium.

In late April, I posted for caregivers, and we set up a where we had five interviews. Unfortunately, again, we had five no shows, but we had better luck in early May. I now have three or four new workers. It’s a process getting everyone trained and comfortable, but we’re getting there. I may even be able to stay at my apartment most of June! That hasn’t happened in months, so after a very rocky first half to the year, things are looking up a little bit.

However, I know how quickly things can change and I know there will be several more bumps in the road. During the conversation with my mom I told her I feel like the “system” isn’t made for people like me. Now, at least we’ve explored the all the options and know how Family Care operates. I find it incredibly sad that there isn’t a better option for people like me. I don’t have all the answers, but, until the day I die, I continue to advocate to make things better. We, as humans, deserve it!

***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. 

“Come on, Stace, let’s go for a ride,” my dad has said almost every day during this quarantine. Most people in today’s society had no choice but to quickly experience what it’s like to stay at home all day, everyday. For many people, this has been a huge lifestyle change. Many people are used to going to multiple places every day. Whether it’s to the grocery store, a hardware store, work, a restaurant or somewhere else, most mid aged people are accustomed to going somewhere every single day. However, for many people with health conditions or disabilities, staying home is the norm. 

As I’ve explained in previous entries, under normal circumstances, I leave my apartment once a week to go grocery shopping. Between care and transportation, it’s just not feasible to go out much more than that. I’ve gotten used to it, and it’s normal for me. Of course, thanks to my family, I do have the opportunity to travel for various things pretty often, but, for the most part, I’m used to staying at home all day alone, in my apartment.   I have learned to find enough stuff to do to keep busy, and, thanks to the Internet, I’m able to do almost everything I need to from my computer.  

So, I laugh to myself when I hear people complain about being “stuck at home.”  My parents aren’t very good at it. As I said above, my dad and mom go for a ride almost every single day. Most of the time, they drive around country roads and don’t even get out.  In the beginning, I went with, but it got boring. They don’t understand it, but I’d much rather stay home and actually do something. Whether it’s read a book, be on my iPad, or watch something on Hulu, i like doing something rather than aimlessly riding around in the back of a car. I’m guessing that’s because that’s what I’m used to doing.

That said, I think this quarantine will bring out some positive aspects for people with disabilities. It will show society that a whole lot more things can be accomplished from home. A lot more jobs can be done from home, which in several situations has been often a difficult accommodation to get. Another thing that will become more popular are Tele-health visits. As we know, transportation continues to be a huge obstacle for many of us with disabilities. Being able to meet with doctors online rather than going to a clinic or hospital would be much easier. I also believe other things like grocery delivery and online therapy sessions will become popular and more affordable. 

Another thing that has resulted from this is how we socialize. Yes, we all miss being able to give our family and friends hugs: however, the concept of using video chatting has exploded. Before the pandemic, video conferencing was mainly used for small meetings where one person physically couldn’t make it. Now, everyone is using it. Whether it’s a meeting with over 100 employees, a school classroom, a happy hour with friends, or something else, video conference calls have become a regular daily occurrence for many people. Again, for many of us who have disabilities, this is exciting news. Due to many different factors, social isolation is often not avoidable for many. Video conferencing becoming more popular in today’s society and will likely allow people to socialize more who otherwise wouldn’t be able to. 

Life as we knew it probably won’t ever be the same; however, like with everything, there are silver linings. We need to focus on what those are and stay positive for one another!

***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. 




Stacy's Journal: Living Through a Pandemic

By Stacy Ellingen, 2020-04-16

Social distancing   Mitigation.  Isolation.  Safer—at—Home orders.  Terms such as these didn’t have much meaning to most people until the beginning of March.  Now, thanks to COVID 19, such vocabulary has become the new norm in today’s society.  Regardless of background, race, economic status, gender, beliefs, or any other factor, almost every single person in the country has been affected by this pandemic in some way.  Whether its businesses closing leaving you without employment, having to cancel elective medical appointments, concerts and sporting events being canceled, wearing gloves and masks to get groceries… the list is endless.  For most people with disabilities, a pandemic of this magnitude often brings on some unique challenges.

When the pandemic started in early March, I was in the middle of switching care situations (which I will write about another time).  Due to this, things were already in limbo and I didn’t have enough workers as it was.  I was at my parents’ house when Governor Evers placed the state of Wisconsin under a Safer-at-Home order.  That meant most of my care workers I had would be going home, as they are college students and their classes would all be online.  All of a sudden, and for the unforeseen future, we all have had to become homebound.  

At my parents’ house, while I love and appreciate all they do for me, it is totally different living with them again--for now over a month.  First, I laugh because while most people are learning to work from home, I work from home all the time, but now at my parents, I don’t have all the technology, so working looks different.  I’m doing my best. Second, while all my basic needs are met, I’m used to and miss having someone with me just to do what I need and want for a certain number of hours per day.  While my parents help me with what needs to be done, I feel like I can’t be too picky with my needs.  For example, I’m on their schedule, so I have to go to bed much earlier than normal. 

For people with physical disabilities, like myself, social distancing when you require assistance with basic needs is not possible.  For those who do have agencies, or many different people coming into help, the desire for masks and gloves is there, but from what I’m hearing, they are still in short supply.  Personally, I have enough pairs of gloves for my workers, but am not certain about what to do about masks.  Everyone has their own individual preference.

For me, the social isolation, is not really a big deal.  I do miss seeing my aides because I ‘ve become friends with most of them, but I normally don’t go anywhere except the grocery store regularly each week.  For others with disabilities, this might be the worst and most difficult part of this pandemic.  Zoom, Google Hangouts, Skype, and Facetime all help, and are the new normal for us now. 

Entertainment looks different for everyone.  For me, I have stayed close with friends and family, using technology.  I have caught up on many of my shows that I like with Netflix and Hulu.    I also read a lot and have continued to do that.  I have gone out for walks in my parents’ neighborhood, but have not been in any type of stores or restaurants since the order came through. 

Non-essential medical and dental procedures have also been shut down, so I have not been to any doctors since February.  These services have to continue for only the most needed of procedures.  I’ve had to cancel a non-essential test I had scheduled. Early next month, I have to get my Baclofen pump refilled. That can’t be rescheduled, so that’ll be interesting!

The anxiety of when and how our country will open up and return to the normal is a daily concern of everyone.  It may never be like it was before.  People will be apprehensive, so large group gatherings in sporting events, theatres, restaurants, churches, shopping areas, concerts and the like will look different.  It is likely that this will be a slow process. 

I’m hopeful that the curve will begin to turn downward and we start to open up for business as a country soon.  Until then, stay safe and healthy!

***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.  

Stacy ' s Journal: Restaurant Accessibility

By Stacy Ellingen, 2020-03-06

It’s Friday night and it’s been a long week. Some friends are meeting up for dinner and invited you to join. Without knowing or caring where, you accept the invite. You’re excited to kick back and relax. You get ready to go and you text a friend asking where they are meeting. The friend responds with the name of a popular restaurant in town. Suddenly, you cringe and rethink your decision to go out. The place they chose is definitely a really cool and fun place; however, accessibility is less than ideal. Scenarios like this one play out frequently for people with physical limitations. Although most restaurants nowadays are “accessible” according to regulations, it doesn’t mean that they are totally accessible. Again, the word “accessible” is often loosely used and widely varies when talking about restaurants.

Simply put, I don’t leave my apartment very often. In fact, I have one scheduled outing per week and that’s to the grocery store. Between cares and transportation, it’s just not feasible for me to get out more. That said, thanks to my family, I do get to go to restaurants pretty frequently when I’m with them. Everything from getting in the door to eating takes some extra consideration. Most restaurants don’t have power doors In fact, I don’t think I’ve seen one that does) and many have a two door entrance which makes it very difficult for people with mobility issues to get in and out. Most of the time depending on the entrance two additional people are needed to hold the doors because it’s usually too tight for the same person to hold both doors open. Even with two people helping hold the doors, it can sometimes be tight because the doors don’t open wide enough to get a wheelchair through without running over people’s toes. It’s often a game trying to get and out of places.

Once in the restaurant, depending on how it’s setup and how crowded it is, it’s often a maze trying to get through and finding a place to sit where your equipment (wheelchair in my case) isn’t in the way of the wait staff or other customers. Some restaurant layouts are better than others. Some have nice wide Isles where there’s a nice amount of room between the tables; some are so narrow and jammed together that I literally get my wheelchair stuff stuck. People are usually pretty nice about moving chairs in or getting up so I can get through, but sometimes it’s embarrassing when a big group has to move When the hostess seats us, my parents usually kind of say what would work best.    If I was with friends, they would not know to do that.

Table heights vary from place to place as well. In bars, the bar itself is usually way too high, but I have seen and been in some with a wheelchair counter.  Usually none of the tables are at a level, where I can pull up and get my joystick underneath it, so I end up sideways on an end, which usually blocks at least one walkway.

In my personal case, I also have to position myself next to a caregiver so that they are able to feed me.  This means I usually am on an end or blocking some pathway for wait staff or customers.

When it comes time to order, wait staff frequently believe that I am not capable of ordering.  They either pass by me and ask my caretaker what I would like, or raise their voice two octaves and talk to me as if I were a two year old.  It makes me laugh when I remember one time, when the wait staff brought me crayons and a placemat to color.  Another thing that happens, is that I get very strange looks if I order a drink or cocktail.  People need to remember that just because we have disabilities, doesn’t mean we can’t enjoy what everyone does, and most of us are able to make choices based on our own preferences.

This is where self-advocacy comes in.  Myself and others will try to assert ourselves to help educate the public on what we ARE able to do, and not focus on what we are not capable of.  That said, I love and intend to keep on going out to eat with friends and family whenever I can.

***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.

Stacy's Journal: What is Normal?

By Stacy Ellingen, 2020-02-12

What is normal?  That’s a loaded question with no right or wrong answer. When people ask it, it’s often meant to be rhetorical leaving people to ponder. A common response to that question is, “there’s no such thing as normal.” That’s so true!  Regardless of the circumstances, normal is usually what everyone strives to be. In the disability community, the word “normal” is something we many times laugh at because it truly doesn’t exist in our world.  

Sometimes, people ask me if I could have one day- 24 hours- without CP, what would I do?  In other words, what would I do if I could be “normal” for a day? I honestly don’t even know.  I can’t even imagine.  First, I have to be realistic and say I understand that if there was a way I could be without CP for a day, I’d probably have to be a psych ward because it’d be such a shock to my entire body at first, I probably couldn’t handle myself. 

With that said, what’s the first thing I’d want to do? Yes, I have thought about it. It’s fun to daydream about. First of all, I’d want to know when it was going happen so that could have my close family and friends could be there.  When the magic first happened, (again, I’m fantasizing about this--realistically, anybody in that situation would likely need psychiatric treatment after that big of a shock to the body) I’d stand up and start hugging people. I’m not sure what I’d talk about, but I wouldn’t shut up the entire day! After hugging everyone there, I’d walk around the entire house (I’m assuming that I’d be at my parents house where I grew up) and experience walking up and down the stairs. I’d carry any babies and little kids around that were with me-–something I long to do.  We’d then go somewhere where I could try playing lots of sports just so I could see what it felt like to play the sports I love to watch. Then, we’d go to every inaccessible place in the area, so I could experience it. I’d visit friends’ houses and go up the lighthouse. I’d go to small jammed restaurants and eat the messiest foods. When we got back to my parents, explore the house some more--do simple things such as run through the grass and ride a bike. I’d probably try driving a vehicle too just so I could experience it.  I would end the day by walking around the neighborhood and chatting with my friends and family until my time was up.  That’s how I’d spend my day!

Is my fantasy realistic?   Absolutely not. If given the chance, would I do it?  Probably.  I’m not sure how I’d handle going back to having cerebral palsy. On one hand, I think it’d be incredibly hard because you just experienced a lot of things you’ll likely never be able to do again; however, part of me wonders if you’d almost miss having the limitations. It’s interesting to think about, but, if given the chance, I think I would do it.

Now, I know and understand this is one of those controversial topics among people with different abilities. Many people feel their disability is a part of who they are and they wouldn’t change it. While I respect their opinion, that’s not me. Like I’ve said in past entries, yes, I accept that I have cerebral palsy and a it’s part of my life; however it doesn’t define the person I am. For that reason, if given the chance, I’d love to experience “normalcy.”  I’m not expecting it in my lifetime.  If it happens, great, but if it doesn’t, that’s okay too.

Normalcy is something we all crave and strive for.  That said, definitions of “normal” widely vary. Unless referring to something static like temperature, the word usually can be used pretty loosely. While we all have our own unique definitions, society has its own that many people continue to strive for!

***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.  

Stacy’s Journal: Hotel Accessibility

By Stacy Ellingen, 2020-01-19

Whether it’s for a fun getaway or for work, staying at a hotel is usually an experience people enjoy. Getting away from day to day life is often something many people look forward to. Regardless of the length of time, staying in a different environment is usually kind of fun. Whether it’s the waterpark, the sauna, the workout room, or a different amenity, it’s often fun to look around and see what the place has to offer. For people with physical disabilities, exploring hotels is also enjoyable experience; however, we often look at different things.  How many people walk into a hotel room and the first thing they look at is the toilet seat? I certainly hope not many people, but for me that’s reality. Yes, it sounds absolutely ridiculous, but it’s true. Let me explain.

In past entries, I’ve mentioned that as a child my family traveled a lot. My parents wanted my sister and I to see and experience as much as we could. We stayed in hundreds of hotels across the country and beyond. Obviously, each hotel has different amenities and features.   “Accessible” rooms are available at most places these days which is nice; however, we’ve learned the word “accessible” can widely vary.  Many times, we’ve found that it’s better to ask for a reason with “more space” rather than an accessible room.  In many cases, accessible rooms have only one king-size bed in them.  For obvious reasons, that doesn’t work so well when there are multiple people staying in the room.  The accessible rooms often aren’t the rooms with the most space either.  Using a power wheelchair, I need space to maneuver around.  I’ve been in rooms where there wasn’t enough space to turn my chair around—I had to literally back my chair out of the doorway into the hotel hallway.  We’ve learned that when we book a hotel room, we not only ask for an accessible room, but also a room with lots of space.

Often, accessible rooms have roll-in showers.  Some hotels provide a basic shower chair; some people bring their own.  My shower chair is very customized and pretty cumbersome, so I’m not able to travel with it.  For various reasons, I can’t take a shower when I stay at hotels, so I sponge bathe and wash my hair in the sink.  That can be if (and it’s a big if) my wheelchair can get into the bathroom; I usually can’t fit it under the sink.  My mom and I have learned to get creative and can usually figure out a way.  As I mentored earlier, when I first enter a hotel room, the toilet seat truly is the first thing I look at.  Why you ask?  Because I’m notorious for breaking them.  Many hotels have inexpensive toilet seats with plastic hinges.   When I sit on them and move to stabilize myself, the hinges often crack.  At my apartment and at my parents’ house, we’ve put knobs on the bottom of the seat so it can’t shift back and forth.  Obviously, we can’t carry a toilet seat around everywhere we go, so my dad brings little toolkit along and he tightens the bolts on the seat.  When I’m on those kinds of seats, I have to be careful how I reposition myself.  I’ve broken way too many!

Another thing in hotels that sometimes cause issues for people with disabilities are the beds.  Depending on ability, higher beds are easier for people to transfer in and out of; for some, lower beds are better.  Everyone has a preference about bed mattresses.  Some people like a very soft pillow top mattress while others like more of a firm one.  Most hotels seem to have pillow top ones.  For me, personally, those don’t work out to well because my body sinks in and I don’t have the muscle strength to move my extremities around on it.  My muscles get very stiff on pillow top mattresses, but obviously when making reservations,, people can’t request a certain type of bed.

We’re a big swimming pool people in my family—we love to swim!  Swimming is so good for my muscles.  When we go on vacation, it’s usually centered around swimming.  For people with physical challenges, just accessing the pool deck can be a struggle.  Although, it’s vastly improved in recent years, stairs would be the only way to access the pool area at some hotels.  When I was young, my parents took my stroller or manual chair on vacation, so my dad would just tilt me back and bump me up and down the steps.  That changed as I got older and wanted my power chair so I could move around independently.  We’ve had to cancel reservations and find a different hotel due to this.   Once I’m in the pool area, another challenge is getting into the actual pool.  Thanks to a law, hotel pools are now required to have a chair lift to help people with various physical limitations get in and out of the pool.  Most pools we’ve been at recently do have one; however, the problem is either the lift isn’t working or the hotel staff doesn’t know how it works.  Over the holidays, my parents and I were in Florida for about three weeks and stayed in multiple hotels.  At many of the hotels the lifts were not working.  At one of the places, the repairman tried to fix it, told us it’d be fixed by the end of the week, but it wasn’t.  Luckily, my parents are still able to get me in and out of the pool so I was able to swim; hotels, it’s not very safe.  I think part of the problem is that the lifts don’t get used very often, so routine maintenance doesn’t happen.  Perhaps a requirement of a monthly maintenance check would help with this.

In my opinion, hotel accessibility has a long way to go.  I didn’t even discuss the many other accessibility issues the general public likely doesn’t even think twice about it.  Things such as curb cutouts, automatic doors, accessible counters, and wide doorways (just to name a few) are other things people with physical limitations have to consider when looking at hotels.  It’s getting better, but there’s definitely room for improvement! 

***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.   

There’s a saying that goes around during this time of year that goes something like this:  “as you grow older, your Christmas list gets smaller, the things you really want can’t be bought.” Similar sayings are often shared around social media.  Obviously, people share it for many different reasons. Often, it could be the first holiday season without a loved one or a serious medical diagnosis that’s behind the post. The holidays can be hard for many people for a variety of reasons. For some people with disabilities, the holiday season comes with a mixed bag of emotions.

A few years ago, I did an entry about how the stress of the holidays can weigh heavy on people with disabilities. In that entry, I talked about how it can be emotionally hard for many people—not just those with disabilities—to attend all the holiday parties and events.  I explained that I happen to be the oldest cousin on both sides, so, as we get older, my cousins do the normal things such as get married and have kids.  I’m not sure why—probably because it’s one of the few times everybody is together—but it seems like engagement and pregnancy announcements often happen during family Christmas get-togethers.  While I never ever want to take away the couple’s joy of being congratulated and everybody’s excitement for them, it’s very hard to witness.  Not because I’m not happy for the couple—I truly am—but because I very selfishly desperately desire those things for myself.  Knowing, due to my circumstances, I may never be able to experience those things, is pretty tough—especially when it seems like everyone around you is living the life you dream of.

Major announcements are just one of the things that may cause people to have mixed emotions during the holidays.  Another thing that may be difficult for some people is finding topics for conversation.  Sometimes, when you have a significant disability or health conditions, you don’t realize how vastly different your life is until you listen to others conversing about their lives.  While somebody maybe worried about what color to paint a bedroom in their house or wondering what sports their child will play, I’m quietly wondering to myself which care shifts I need filled for the next week so I can use the restroom and eat.  This goes beyond just myself.  When we get together with extended family, my parents often find themselves in a similar situation.  Especially now, since their brothers and sisters are getting to retirement age, they’re talking about plans to travel all over the place.  While my parents would love to travel (probably even more than their siblings), due to my circumstances, they can’t.   We try not to think of these situations negatively, but it makes us realize just how different our life Is.  I’m in no way meaning to disrespect our extended family either.  They do try to understand our circumstances, but, like with anything, unless you experience it first hand, you don’t fully understand.   It’s just the way life is.

As the years go on, the extended family Christmas gatherings get bigger and bigger as the cousins have families of their own.  Eventually, it’s going to get to the point where the big gathering on each side will stop, and each immediate family will just do their own.  This saddens me to think about.  Yes, my parents will hopefully be around for many more years, and my sister will always make efforts to include me in her holiday family things; however, I realize there may come a time when I’m not able to be with family during the holidays.

In recent years, social media has added another factor to the stress of the holidays for some people.  For me, looking on social media on any holiday is a double-edged sword.  On one hand, I love being nosey and looking at  everyone’s photos.  On the other hand, though, seeing people my age have families of their own makes me wish I had that.

Normally, I’m pretty good at seeing happiness through others, but, very admittedly, the holiday season can sometimes be pretty tough.  Personally, nothing on my wish list can be bought, and, it has been that way for many years.  I think it’s that way for many adults though.  There are many different intangible things people wish for.  Some are received; some unfortunately are not.  This is all part of this thing called life. 

The holiday season brings on different kinds of emotions for everyone.  There are many different ways to deal with these.  For me, personally, I find it helpful to remember all things I do have and think about all of things I’ve accomplished despite my disability. It’s challenging to do—especially during those tough times—but, we need to focus and make the best of what we do have; not dwell on what could, would, or should have been.  All the time, but especially during the holidays, we need to take a moment to be grateful for all that we do have!

***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.

Stacy’s Journal:  The Power of my Eyes

By Stacy Ellingen, 2019-11-04

Can you imagine your life without a computer? Most people now literally spend hours and hours a day on a computer.  Everything from writing reports for work to paying bills, to playing games, to researching and booking a vacation, the uses of computers are truly endless. Whether people like it or not, computers are part of our lives.   How many times have you thought about what muscles it takes to move the mouse across the screen or type a word on the keyboard? Most people don’t even think twice about what physical abilities it takes to use a keyboard and mouse.  Although computers can open many great opportunities for people with disabilities, accessing them can often present many challenges.

Since it was known pretty much from birth that my disability would affect my fine motor skills, I’ve used computers almost all of my life. I think my first actual computer was an Apple 2. I used a huge enlarged keyboard (seriously, I think it was at least two feet by two feet). It had a key guard to prevent me from hitting multiple keys at once. I don’t think it had mouse functions though.   I remember practicing typing my numbers on a blue screen. In first grade, I think I started using one of the very first Macintosh computers with the same keyboard. Around that time, I also started experimenting with different augmentative communication device.   Again, access was an issue because I have limited fine motor ability really only in one hand. My right hand doesn’t really work and the left has limited function, so we had to trial and error lots of different access methods. I tried things such as different switches, headpointers, and other equipment. We spent hours trying different positions and techniques.  With each piece of equipment I tried, I was timed to see what was fastest. My occupational therapist and speech therapists spent hours collecting data to figure out what would work best.   I was a pretty stubborn kid, and didn’t like to use anything except for my hand. I don’t know why, but I still feel that way—probably because I feel like I have most control over it.

As the years went on, the keyboards became smaller and more advanced.  They began to have built in mouse functions which allowed me to use the mouse independently.  I had a few different keyboards over the years. The computers also became smaller too. Eventually, communication devices became computers and for a few years I used my device as a computer at school. I’ve always had a desktop computer at home though. We usually tried to have the same setup as I used at home.  It just made it easier for homework.

When I went away to college, I went back to using both a communication device and a desktop computer because it was just easier.  Actually, during one of visits before I started, the Center for Students with Disabilities showed me the Intellikeys keyboard.  It’s an enlarged keyboard with the mouse functions built-in.   I’ve been using it for over 17 years.  It works great.  However, as I explained in a previous entry, the keyboard was discontinued about five years ago and to my knowledge there still isn’t a keyboard on the market that has built-in mouse functions.  Luckily, Intellikeys still works with my current operating system, but, as technology advances, I know there will come a point where it won’t anymore.

I mentioned in an entry a few months ago that I was going to be getting an eye gaze system.  My parents and I first learned about it when we visited my Independent Living Center in March.  The assistive technology person thought I might be a good candidate for it.  In April, a representative from the eye gaze company came to see if I would be.  The way she tested me was really neat.  She hooked the device (which looks like a ruler) up to her tablet, and there’s a program that calibrates it to your eyes.  There was a screen that had dots and I had to look at each dot until it burst.  I got like a 96% on it which meant I definitely would be able to use it.  We learned that I could funding assistance through a grant program AT&T has for people with disabilities.  The rep began the paperwork which took a few weeks a process, and in May, I learned my application for the voucher was approved.  I paid my part of the deal and the rep ordered my eye gaze system.

I first got it in early June and had to setup an appointment with the rep to get it installed.  As luck would have it, I got a faulty device, and we had to send it in three different times.  Each time, it was gone for a couple weeks and then I had to wait until the rep was in the area so she set it up and try it.  It turned out to a very frustrating several month process.  In mid-October, it came back and it finally worked!  The rep installed it, but she didn’t do a very good job of mounting it or teaching me how to use it.  My parents had to remount it so I could use it, and I’ve been slowly teaching myself how to use it.

It’s definitely a very neat concept, but it’s going to take quite a while to learn and effectually use.  Using just my eyes, I can control the mouse and type on an onscreen keyboard.  The mouse functions such as  double-click, right-click, left-click, drag, and scroll are all on a bar on a side of the screen, and when I want to use one of those, I look at the icon for a second and then look at the spot where I want the function to take place.  It’s hard to explain and even harder to do at this point.  It’s going to take a lot of practice, but hopefully I’ll get used to it.  For the time being, I’m using a combination of the Intellikeys and the eye gaze.  Eventually, the eye gaze will probably have to replace the keyboard, but hopefully that’s a few years down the road.

I know I keep saying this, but technology has come a long way.  Who would have thought 20 years ago that people would be able to use the computer just by moving their eyes?  It’s pretty amazing.  I just wonder what the next big thing will be! 

***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.

Stacy’s Journal: Life’s Detours

By Stacy Ellingen, 2019-10-05

It’s often said that there are five seasons in Wisconsin—Winter, Spring, Summer, Fall, and Road Construction.  Obviously, calling road construction a season is a facetious way of saving that there’s a lot of road work that goes on from about April until November.  Road construction often leads to delays and detours.  Even though it’s necessary to keep the roads functional and safe, people usually get aggravated by it because it takes longer to reach their destination.  Nothing really can be done about it other than leaving earlier or finding different routes.  It’s part of life.  Many people with physical disabilities don’t drive, but we often experience our own type of road construction so to speak—navigating through life in an “accessible” world.

Unless one is unable to, people don’t think about how many times they did step up and down from something each day. Whether it’s stepping in and out of a vehicle, stepping off a sidewalk to cross the street, or riding a escalator in an airport, people step up and down multiple times a day.  People who have mobility issues often are very aware of these things because we have to find ways to overcome these simple steps that most people take for granted.

Thanks to the Americans with Disabilities Act, most public places are “accessible.”  I put the word accessible in quotes because, in my opinion, it’s a relatively loosely used term in today’s day in age.  Don’t get me wrong, I’m very grateful for the advancements in accessibility over the last 30 years.  They have greatly improved my life and have allowed me to do and experience many wonderful things.  However, with that said, there is still vast room for improvement.  I also should mention that in many cases things that are deemed accessible often require people to go to great lengths in order to access whatever it is.  Let me explain.

My parents and I recently returned from a trip to Las Vegas.  We’re not huge gamblers, but I love the city because there’s always so much going on.  Since I love going there, we usually go once a year.  After the airlines ruined my power chair a few years ago, I only fly with my manual wheelchair, so I have to be pushed everywhere.  I’ll write about getting through an airport in another journal another time, but everything from getting an accessible shuttle to our hotel to crossing the street we seemed to run into barriers.

We’re pretty seasoned travelers, so my dad had booked a wheelchair accessible shuttle to the hotel.  We get there, and, of course, vans from the transport company were there; however, not the accessible one.  We had to wait over a half hour for it.  We finally get to our hotel and start walking around.  There are lots of skywalk bridges between the hotels on the Strip.  Each side of the skywalk has stairs, an escalator, and an elevator.  In Vegas, elevators seem to frequently break down.  Multiple times, we found ourselves stuck on a skywalk because an elevator was out.  When that happened, we usually had to go back down in the elevator that was working and find a different way.  Admittedly, very unsafe, but there were a few times where my dad justice tilted my chair back and took in me down the escalator (we found some nice people to stand in front of me in case I’d fall).

Skywalks weren’t the only thing.  There were four steps up to the pool deck at our hotel.  If people with mobility issues wanted to go to and from the pool area, they had to find a hotel employee who would have to call another employee to walk us through the back to get to and from it.  This would take forever, so my dad just pulled my chair up and down the stairs each time.  Our hotel’s casino had four stairs in the middle of the going to the lower tier where the main entrance was.  The ramp was under construction all the while we were there.  Again, they wanted people who used wheelchairs and scooters to wait to be escorted around the back.  We never did this because we didn’t want to wait—my dad again pulled me up and down each time.  When you have a limited time on vacation somewhere, the last thing you is wait to be escorted because you can’t do stairs.

Vegas isn’t the only place where these things happen.  It’s really everywhere.  Many places’ accessible entrances often aren’t their main entrances.  While I’m thankful there’s an accessible entrance, it doesn’t seem fair to me that I have to use a different entrance then everybody else.  Obviously, that’s just my opinion, and I understand that everything can’t be made totally accessible everywhere.

Though, our “road construction” isn’t what most people think of, it’s still aggravating.  While it’s fun to fantasize about, I don’t think there will ever be a totality accessible world.  There will probably always be roadblocks and detours people with disabilities to overcome.  Life is full of detours and roadblocks for everyone—not just those with disabilities.  It’s hoping we handle and persevere through them that shows a person’s character!

***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.


Stacy’s Journal:  Village of Special People

By Stacy Ellingen, 2019-08-31

“It takes a village to raise a child.”  It’s a saying commonly used when talking about supporting a child who has disabilities.  Whether it’s before the child is even born, right after birth, or years later, when parents learn that there’s something “wrong” with their child, panic strikes.  A million questions go through their heads.  Getting that initial diagnosis and prognosis is often life-changing for the entire family.  After the shock wears off, it’s often realized that, although it’s probably different than originally planned, life goes on.  It’s realized that there are special people in the world to help guide you on this journey of life.  Many times, special relationships are formed and these amazing people are lifelong friends.  They may not be soccer coaches or dance moms you once dreamed of being friends with; instead, these people are therapists, paraprofessionals, and other families with special needs that have supported you along the way.

As I’ve explained in other entries, complications during birth caused brain damage resulting in my diagnosis of cerebral palsy.  Though I wasn’t officially diagnosed until I was three months old, because of the lack of oxygen I had at birth, my parents knew immediately I’d likely have some limitations.  At eight months old, I started physical therapy.  I went to a private therapy place in Oshkosh.  Because of the dynamics of this place, the physical therapist and some of her clients were able to form a special bond.  There were five or six of us around the same age with similar circumstances.  It was a pretty unique situation.  The families were able to help each other with different resources and things.  A couple of us were on United Cerebral Palsy (UCP) telethons together.  There was a speech therapist and occupational therapist in the facility that some of us saw.  I saw the physical therapist until I was over 16 years old.  We became like a big family.  We supported each other through life’s ups and downs.  Thanks to Facebook, many of us have reconnected and kept in touch.  It’s very neat to see where we all ended up.  Looking back, it’s amazing to see how far we’ve all come.  I recently met the physical therapist for dinner.  It was really fun to catch up and fill her in on what I’m doing.  It’s partly thanks to her, I am where I am today.

Another group of those special people are the therapists I had in school.  I’ve explained before that throughout my school years I had physical, occupational, and speech therapies.  The frequency of these therapies depended on my needs each year.  I had some great physical and speech therapists throughout the years.  I still occasionally keep in touch with some of them and they love hearing how well I’m doing.  I was also very fortunate to have the same occupational therapist from Early Childhood through my senior year of high school.  Again, she helped my family and I navigate through school system.  She was such an important key to my success.  In fact, when I do presentations or participate in board meetings, I often think of her because we worked for years and years with different assistive technology for my communication.  I have her on Facebook and sometimes I send her a message just saying “Hey I’m doing this and this—it’s because of all your help back in the day I’m able to do these things.”

Paraprofessionals are another group of a very special people in life.  Again, in past entries I’ve explained that thanks to the amazing paraprofessionals I had, I was able to succeed in regular education classes starting in kindergarten on.  These ladies helped me with whatever I physically needed to succeed in the regular class.  Everything from getting my jacket on and off, to feeding and toileting, to getting books out and taking notes, to setting up my computer or being my scribe for tests…  the list goes on and on.  I was truly blessed to have many outstanding paraprofessionals in my life.  Because they worked closely usually one-on-one with me every day at school, I became pretty close with most of them and keep in touch with them to this day.  I was incredibly blessed to have the same main assistant for eleven years.  Obviously, we became very close and remain close to this day.  We consider each other family.  We’ve become friends with each other’s extended families.  It’s definitely a very special relationship.  I think everybody in both of our lives know that we wouldn’t be the same people we are if we hadn’t met!  It was definitely meant to be!

There are many other special people in my life, but these relationships probably wouldn’t have happened if I didn’t have the unique circumstances I do.  Many people my age have friends from moms’ groups, friends from their kids’ activities, friends from a volleyball league or other activities.  While I’ll probably never friends from situations such as those, I’m incredibly fortunate to be friends with so many people who made such a profound impact on my life.  It really does take a village, and I’m truly blessed to have an outstanding village of people who continue to support me! 

***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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