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.

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.

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.

“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.

Ever find yourself wondering which side you’re on?  Whether it’s a game where your two favorite teams, deciding between two colors of paint for a home remodel project, determining which political candidate is best, or something as simple as deciding between your two favorite foods, everybody has had to make decisions that they’re uncertain of.  Often, there isn’t a right or wrong decision; but what we decide usually has a (positive or negative) impact.  When we are trying to decide on something, we sometimes have that feeling of uncertainty.  Should I be doing this?  Is this right for me?  What if I chose something different?  That feeling of uncertainty is something we all face on a daily basis and it’s not a bad thing.  Often times, we feel “on the fence” about the decisions we make which sometimes makes us questions things.  When we are “on the fence” about something, we don’t know how to feel about whatever it is.

In past entries, I’ve explained how unless I’m in situations that presents itself, I normally don’t think of myself of having a disability.  No, I’m not ashamed of it; it’s just not something I focus on.  It wasn’t really until after college that I learned the world of disability advocacy existed to the extent it does.  My first job of being an online mentor for students with disabilities really led me into the advocacy world.  Especially after college, I quickly learned that it was something I wanted to get involved in.  Advocating has opened many doors for me and I’ve found my purpose.  I truly love it!

Having said that, though, I often still find myself struggling to find a happy medium.  I feel like I’m somewhere in between most of the time.  I have many friends with disabilities.  It’s interesting to me that most are either completely involved in disability advocacy or they aren’t at all.  I know very few who are in between like myself.

The past month or so has been a great example of this conundrum.  I was gone three weekends in a row in late July and early August.  I had multiple events going on each weekend and my parents arranged their schedule to accommodate me.  The first weekend I met three of my friends from college for lunch and shopping in Milwaukee.  It’s something that I look forward to every year because it’s the only time we all get together.  One of my friends now lives in a different country and she and her family only come back once a year.  We always make sure we get together when she’s home.  These three girls were caregivers for me at UW-Whitewater and the four of us became really close friends. 

The second weekend was when I really felt mixed emotions.  I told my mom I felt like it was a weekend of two extremes.  Saturday, my mom and I were at Disability Pride Fest in Madison literally all day long.  I’m part of a group that’s creating to YouTube channel about people with disabilities and we taped some videos at the festival.  It was a long day, but I had a blast.   Again, I guess I’m used to sticking out, so when I’m around people with all types of different abilities, it’s a unique feeling.  I loved blending in with the crowd and not being stared at or judged If my muscles spasmed or if my tongue accidentally stuck out.  There are very few places where I don’t stick out.  As I’ve explained in other entries, since my disability is very apparent, when I’m at something like that, I automatically feel the need to prove my intelligence.  Please understand that by saying that, I’m in no way trying to belittle people who have intellectual disabilities; it’s just that when you’re nonverbal and use a wheelchair, people unfortunately make assumptions.  The more events I attend, the more comfortable I get.  I truly love being an active member of the disability community.

Sunday of that weekend I attended a gender reveal party for one of my best friends from grade school.  When I got the Facebook invite, I had to take a second to just breathe.  I knew I had to attend because love my friend and wouldn’t miss it for the world, but I also knew it’d be selfishly emotional for me.  As happy as I am for my friend, I just want those exciting life moments for myself.  Knowing I’ll never likely experience those life-changing moments can be a hard pill to swallow.  However, I knew I couldn’t let it stop me from going and supporting my friends.  Mom and I went and it was a great time. Their family and friends know me and are very accepting.  I caught up with another friend and her family too which was very nice.  When they did the reveal, I had to take a couple seconds to compose myself, but then I was fine.  I’m so happy for her and her family, and I’m incredibly blessed to have friends who continue to go out of their way to include me in their life—it truly means the world to me!

The last weekend my parents and I drove all the way up to Superior where I had a two-day Independent Living Council meeting.  The Council rotates meeting at the eight Independent Living Centers across Wisconsin.  I’ve been on the Council for about two years now, and I finally feel like I understand what it’s about.  I’m becoming more and more active on it.

One of the weekends, my mom and I were talking and I said, “man, I’ve taken us on quite a journey, haven’t I?” She chuckled and agreed.  The events of the last month have been a whirlwind.   I find myself trying to find a sweet spot between wanting to do all I can to advocate for people with all disabilities, but yet wanting to be as socially “normal” as I can.  At times, it’s challenging to find the right balance, but I wouldn’t trade either for the world. 

***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.

Whether it’s getting a new car, a new outfit, new appliances, or whatever it may be, getting something new brings excitement to people most of the time.  Usually, people want to show the item off or tell others about it.  Depending on what it is, it’s often fun to try it out or play with it.  It’s almost human nature to feel some excitement when we get something new.  Sometimes, though, getting new things can bring on mixed emotions and can feel like a reality check.

Every five to ten years, I get a new power wheelchair.  I’ve used one since I was two years old, so I’m on my sixth one.  My current one is just over three years old, so I won’t be due for another one for quite awhile.  People are often surprised when I say that’s a good thing.  Most people assume getting a new wheelchair is like getting a new car.  When it’s time for a new chair, countless people tell me, “oh, you must be so excited to get your chair.”  I just smile and laugh to myself when I hear that because it couldn’t be further from the truth.

When people get a new wheelchair—especially a customized one—it’s often a several month (or longer) process.   First, if people rely on government benefits, which most people with disabilities do, you need a very specific letter justifying why you need a new chair.  With Medicaid, a new chair has to be less expensive than the repairs and modifications needed to fix your current one.  Getting that letter from your Durable Medical Equipment (DME) provider isn’t easy.  They have to specify every single thing wrong with your current chair, explain in detail what modifications are needed, and why a new chair would be more beneficial for you.  It often takes at least a month to get a response from Medicaid.  If they say no or have questions, the DME provider has to submit a response again and wait another month to hear.  Once you finally get a yes, you then have to meet with your DME provider and often a physical therapist to determine what specific chair and features would be best for you.  Based on that, you have to meet with your primary doctor to discuss the features (it has to be in the case notes that you specifically discussed it) and get a prescription for a wheelchair.  The DME provider then submits all the paperwork to Medicaid again and we play the waiting game again.  This process takes a very long time—especially if you have customized features (elevate, tilt, recline, etc…).  Eventually, when Medicaid comes back with a decent compromise (you likely won’t get everything you want—even with justification; I was denied the elevate feature on my current chair), the provider then finally orders your chair.  At that time, depending on the type of chair you get, if you’re lucky you get to choose the color of your wheel fenders.

Once the chair ordered, it takes another couple months for it to come in.  When the DME provider gets it, they assemble it and modify it to further meet your needs.  Finally, you setup an appointment to get your new chair.  Sounds exciting, right?  Not really.  It’s actually a pretty stressful day.  With you there, they make even more adjustments and modifications based on your body and ability.  For many people, including myself, it’s very hard to adjust to a new seating system.  Even though, our posture is likely better in the new chair (because in many cases that’s one of the main reasons why we end up getting a new chair), our bodies aren’t used to it.  In fact, many times, people have to ease into using their new chair because it’s so overwhelming on the body.  It definitely takes a couple weeks to get used to.  While, yes, it’s eventually kind of cool to show people your new chair sometimes, I don’t consider it fun.  It’s frightening to think about what my life would be like without the invention of power wheelchairs, but, having said that, I’d give anything not to have to rely on one!

Power wheelchairs aren’t the only equipment I now rely on.  In a past entry, I mentioned that I had to get additional pieces of equipment a few months ago.  I received a Hoyer lift and a shower/commode chair.  While it didn’t take quite as much time as power chairs do, I had to go through the same process.  This equipment allows for safer transfers and better hygiene.  My mom, dad, and sister were all with me when my DME provider delivered the Hoyer lift.  The Rehab Tech trained them on how to use it, and then my mom and sister spent a day training my staff on it.  This probably sounds very petty, but having the lift brought into my apartment wasn’t easy for me.  Besides my adapted computer table and desk in my office, I didn’t really have any special equipment.  To simply put it, my apartment looked pretty “normal.”  Even though I know they’ll help me be able to live independently longer, bringing two additional pieces of equipment in was a reality check for me.  It was a punch in stomach realizing that I need these things to live.

Sometimes, getting new things isn’t always fun, but often, it’s necessary.  This is the case for people who rely on medical equipment to literally survive.  While getting new medical equipment or assistive devices isn’t necessarily fun and can come with mixed emotions, it’s part of life for many people living with disabilities and health conditions.  It just makes it that much more special when we do get those fun new things! 

***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.

“You don’t know what you don’t know.“  Most people have heard a similar saying before.  We hear people say you should always keep learning.  When we are younger, we often think we know everything we need to know about life.  As we age, though, we realize that there is so much more to learn.  Whether it’s learning something new about your favorite sports team, your city, your vehicle, your neighbor, a health condition, a financial resource, or just a fun fact about something silly, we continue to learn every day.  People with disabilities are no different—in fact, it sometimes seems like we are forced to find out more information and figure complicated situations out more than the average person.

My parents and I used to consider ourselves pretty educated people when it came to navigating the whole “disability system.”  My mom worked in the special education field for over 40 years, my sister is an occupational therapist, and I’ve been pretty active in disability advocacy for a few years now.  One would think given that combination we’d have a pretty good handle on how everything works and what resources are available.  However, that couldn’t be further from reality. 

In recent months, we have found ourselves wide-eyed with new information, but yet having to go to great lengths to find other information.  It’s not just about one thing either—it’s multiple issues.  Obviously, we had to learn and the long-term care system years ago even before I graduated college.  My parents and I met the local Aging and Disability Resource Center (ADRC) where we were explained and given the choice of two options—IRIS or Family Care. IRIS sounded like the best option for me.  I vaguely remember picking my consultant, but I don’t think it was ever explained that I had a choice of what IRIS Consultant Agency and Fiscal Employment Agency I wanted.  I’m almost embarrassed to admit this, but it was well over five years after I started in IRIS before I realized I had those options.  I may have missed the boat on that, but information wasn’t readily available either.  Then, when care issues started to arise years ago, my consultant gave us all the resources and explained all she could, but there wasn’t Information easily available.  Now, yes, I understand that I choose to self-direct everything and that’s part of it; however, it’s really had to do without knowing what’s available.  Furthermore, last fall, when I just wanted to learn more information about Family Care and ask questions, the ADRC wouldn’t even meet with me unless I enrolled.

Long-term care is just one example of where I find myself still learning the hoops.  A few months ago, I visited my Independent Living Center.  They have an accessible model house that has all sorts of assistive devices, so I wanted to see if they had anything I could benefit from.  It turns out I already have a lot of the things they had, but I was talking with the assistive technology specialist about accessing my computer.  He mentioned that I may want to try eye gaze.  I had tried it many years ago and didn’t like it, but he said technology has come a long ways and that I may want to try it.  He explained I could get it funded through the Telecommunications Equipment Purchase Program (TEPP).  I had never heard of it before.  It’s a program through Wisconsin Public Service that funds assistive telecommunications equipment for people with disabilities.  The rep from the eye gaze company came and did a demo a few months ago.  I was able to try it, and I was able to successfully use it.  It was actually really cool—I will be able to control my computer with just my eyes.  We’re just waiting for my TEPP application to be processed and then I’ll be getting the equipment.  Not knowing about TEPP, I’ve probably missed out on some assistive technology equipment that would have made life easier.  Again, I don’t know how people are supposed to know about these programs.

Health care is another area where information seems scarce.  As I’ve explained in a previous entry, I started seeing a rehabilitation doctor a few months ago.  My neuro team was shocked when I told them I didn’t have one.  The rehab doctor sort of oversees my medical care.  I left the first appointment feeling like this should have happened years ago—not because I’m thrilled with all these extra appointments I’ve had, but because it may have been helpful in treating or preventing some of the issues I had.   My sister later explained that rehab doctors are a relatively new concept, but I feel like my regular doctor should have referred me.  Again, how are people supposed to know these are available?

Recently, my parents and I have started trying to figure out how my benefits will change when their benefits change.  We’ve found out that there’s a lot of confusion about this and people are being very misinformed.  After my parents made several phone calls and I talked to friends with similar circumstances, we’ve kind of have an idea of what needs to happen.  There isn’t a person that guides you through it.

It’d be a huge understatement to say we’ve learned a lot in the last few years.  There’s truly not a road map on this journey.  I’m truly blessed that my parents and I have the cognitive capability to navigate this curvy road together.  I’ll continue to do everything in my power to help others do so as well! 

***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.

Imagine relying on assistance of another person to accomplish every single task you need to survive on Earth.  Usually, kids are pretty physically self-sufficient when they reach the age of four or five.  If all goes right, those physical capabilities last a lifetime.  Often, as people reach their senior years, they sometimes need more assistance again, but generally most people have at least 50 or 60 years where they’re physically able to take care of themselves.  For people with disabilities (born with or acquired) or health conditions, relying on other people to assist you with all of your basic needs can often seem overwhelming.

As I’ve explained in previous entries, cerebral palsy affects every part of my body.  I need complete assistance with all of my basic needs like toileting, bathing, and dressing.  My disability was caused from  complications during birth, so I’ve never known life any different—I’ve always needed quite a bit of help.  As a child, I guess I didn’t really realize how much assistance I required because it was never made into an issue.  My parents did all of my cares and we were a “normal” family.  I never went to any special camps or respite programs.  Family members took care of my sister and I occasionally while my parents went out to dinner or very occasionally on weekend get-a-ways.  Just like many other families do, we also had high school babysitters take care of us occasionally.  Though I didn’t realize it at the time because I was a kid, my parents had to do some extra training with them to ensue my needs would be met.  Those high school kids had to be pretty incredible people to agree to watch a kid with significant needs—I remember I loved the babysitters we had. 

When I first started school at the age of three, I was in Early Childhood programs, so there were lots of instructional assistants that helped all the students in the class.  When I entered Kindergarten, I was in a regular education classroom, so a one-on-one assistant was assigned to me to help me.  This person helped me with whatever I needed to succeed in school (getting books and equipment set up, taking notes, getting from one place to another, feeding, toileting—the list is endless).  I had some incredible assistants through the years.  I was amazingly blessed to have the same assistant with me second through twelfth grade.  That’s pretty unheard-of in today’s world.  We were very lucky that the district allowed us to stay together all the way through; we developed a very special relationship!  We are still close today.

Starting in junior high, a home health came in just for an hour or so after school just to get me off the bus, take me to the restroom, and give me a snack.  Like I discussed in a previous entry, this was the first time I had actual care aides taking care of me.  Though they didn’t really do many personal cares with me, I still had to develop a relationship with them.  Many of them were middle-aged woman, so they were like more babysitters to me, and I don’t mean that negatively.  Since they were older, though, looking back, that’s probably why I had very few problems with them.  They knew what needed to be done and understand the responsibility.  I still keep in touch some of them.

College was a whole different experience.  I obviously needed assistance with all my basic needs.  As I’ve talked about many times, the care agency I had in Whitewater hired a lot of students which was really cool.  Probably because I was young and a student as well I had very few problems with aides.  They knew what I needed and that I relied on them.  It rarely happened, but when there was a problem between a worker and I, the agency would often just take the person off of my schedule.  This was mainly possible because my friends would often pick up the shifts.  I admit I was probably a little spoiled down there!

When I moved to Oshkosh, the two agencies I had had a mixture of people working for them.  I then began to realize what I would be facing for the rest of my life.  It takes a special type of person to be a caregiver.  Some people have it and some don’t.  When I had problems with a person, the agencies would try to work the problem between us out.  Sometimes the intervention worked, but often it just made things worse.

Over the years, I’ve gotten much better at working with people.  Now that I’m hiring my own staff, I’ve realized that “good ones” are few and far between.  I’m not going to be friends with every person I hire and that’s ok.  I’ve learned that some people need to be told what to do and how to do it over and over.  Work ethnic widely varies, and professionalism is often lacking.  I have to have a lot of patience working with my staff as there’s a variety of personalities and attitudes.  It’s definitely a challenge.

Having to rely on others for assistance creates a unique lifestyle.  You have to be very patient; yet you have to be so organized.  I’ve realized that as frustrating as it is, this is something I’m going to have to deal with the rest of my life.  Admitting, sometimes I lose my cool on people who are trying to help, but I think everybody has moments of frustration—it’s part of life! 

***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.

Ever feel like there isn’t enough time in the day?  I think everybody has felt that way at some point.  Whether it’s juggling time between work and family, school and friends, volunteering and working, or just living life, we all have found ourselves trying to find a good balance.  Sometimes, it seems difficult to find time for everything.  People have to prioritize their activities based on what’s important to them.  For people with disabilities and health conditions, it’s no different.  Often, we have some additional things, such as appointments, treatments, and cares to juggle.

A couple of years ago, I wrote an entry about time management.  I explained how I have to be a very organized person and how I live a very scheduled life.    Everything from the time I get up in the morning, to when I eat each meal, to when I use the restroom throughout the day, to when I get back in bed at night… everything is scheduled.  It’s just the way it has to be since I live independently with the assistance of drop-in care aides.  I’ve gotten used to this and I have a routine that works well for me.  Having scheduled care times also means that I have to take advantage of my “free” time between shifts.  I have to make sure I get everything I need done between shifts.

Recently, I’ve found my schedule is getting more and more complicated.  In addition to my increased involvement in disability advocacy efforts, more health issues due to cerebral palsy have surfaced, and I’ve had more medical appointments in the past two months than I’ve ever had before.  After my unexpected surgery in early January, my neurosurgeon team referred me to a rehab doctor (he’s actually a physiatrist) to oversee my medical care.  I saw him first in early March and he referred me to multiple different doctors for various issues I’m having.  I admit, my parents and I weren’t sure what to expect going into the appointment, and it was a bit overwhelming getting all these different referrals.

Though it may change in the near future, my parents continue to drive and accompany me to my medical appointments.  My mom knows my schedule, so, for right now, she schedules all of my appointments.  We’ve had several already and have a few more in the coming weeks.  Each appointment often results in subsequent appointments or treatment.  We’ve learned that some issues are treatable, but some aren’t.  Cerebral Palsy is considered a non-aggressive condition, but the secondary effects of it often causes havoc as people get older. 

Some appointments result in ordering new equipment and additional personal care needs which means more meetings and appointments to get everything setup.  With more equipment and exercises comes the need for training for my staff which takes time not only to actually do, but also to setup and coordinate.  Right now, my mom and I are trying to figure out the best way to do this.  We’re going to probably end up setting up two training session that my staff can attend.  Since IRIS doesn’t really allow for training hours in my budget, I’m likely going to buy gift cards for those who attend.  

Obviously, these new things will increase the length of my personal care shifts and eventually change my whole routine.  Fortunately, I had my annual Self-Directed Personal Care screen in the middle of all this, so the nurse was able to capture all that’s happening.  My hours will increase quite a bit when my new plan starts in a few weeks.  I’ve been busy trying to figure how to reconfigure shift times to be able to do all these new things.  It’s tricky because I’m not exactly sure how long everything will take.  It’s going to be trial and error for a few months.

Between doctor appointments, meetings with people about equipment, doing paperwork, scheduling aides, and coordinating everything, I feel like disability-related issues have consumed my life lately.   After my mom made me another appointment a few weeks ago, I finally said to her, “I wonder how people find a balance between treatment and just living?”  When do you say enough is enough and just live life?

I don’t know the answer to that question.  On one hand, I know treatment and interventions will probably allow me to be more comfortable and live independently longer.  However, on the other hand, part of me wants to say forget it and just live life.   As I’ve explained in past entries, I normally don’t think of myself as having a disability, but, admittedly, having a disability has been very apparent in life lately.  I feel like I’ve overcome too many obstacles to let my disability completely take over my life.  I have to continue to strive to find the right balance, so I can live life to fullest! 

***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.

Have you ever been somewhere when you suddenly pause for a moment and think to yourself, “How did I get here?” Whether it’s laying in a hospital bed, walking on stage for a graduation, lining up for a play on the field of a packed football stadium, sitting in a courtroom awaiting the jury’s verdict, or in another situation, most people have experienced a moment where they have stepped back and thought about how they ended up in that situation.  Many times, those moments can feel like an epiphany to people.  Obviously, depending on the circumstances, it can be a positive or negative revolution.

I had one of those moments a few weeks ago while attending Independent Living Days in Madison.  As I mentioned in a previous entry, last year I was appointed to the Independent Living Council of Wisconsin.  The Council works together with the eight Independent Living Centers in Wisconsin to provide services and advocacy for people of all ages with all types of disabilities. The Council meets quarterly rotating visiting the Centers.  Due to transportation and care issues, I attended a couple last year via teleconference.  Fortunately, thanks to my parents, I’ve been able to attend the last three in-person.  The February meeting is usually held at the center in Madison because Independent Living Days are right after it.  After discussing it with my parents, my mom agreed to come along as my caretaker.  Being my first time attending, I wasn’t really sure exactly what Independent Living Days were.  After some emailing, I learned that it’s a two-day event- the first day is like a conference about Independent Living and the second day is meeting with legislators at the Capitol.  There was a teleconference beforehand about what messages and asks to bring to the legislators.  After the teleconference, I programmed all sorts of different things to say into my communication app.

Being a council member, I was in Madison for four nights.  Monday was our council meeting, Tuesday was an off day (the directors of the Centers had their meeting), and Wednesday and Thursday were Independent Living Days.  My sister and brother-in-law live in the Madison area, so I’ve been down there a few times, but this time my mom and I really got to explore the area which was fun. Tuesday, we walked around State Street and the Terrace which was neat.  We also were able to meet relatives for dinner a couple of the nights so that was nice.

Wednesday and Thursday were amazing.  The hotel where the conference was at Wednesday was full, so, since parking is such a mess is that area, mom and I walked from our hotel which was about a mile away.  Of course, it’s Wisconsin, so it was snowing that day which made the walk interesting.   They started the conference off by giving a brief history of Independent Living in Wisconsin.  Being relatively new to this, I found it very interesting.  The break-out sessions were more geared toward Independent Living Center staff, but it was great learning more about the services the Centers provide.  For me, it was absolutely awesome getting to network with so many people—especially people from my area.  In the evening, they had a dinner, an award ceremony, and karaoke, so it was fun to be able to socialize.

Thursday morning, we met at the Capitol bright and early.  I had only been in the Capitol one other time—the day before my sister’s wedding and we were only there for a few minutes.  I had never actually seen offices or rooms.  It was neat to see.  Each center setup visits with legislators from their area of the state.  People went in groups to each visit.  There was at least one employee from the Independent Living Center in every group and that person took the lead in back the conversation.  There were four main topics we were supposed to discuss: Healthcare, Mental Health, Transportation, and Independent Living funding.  Each category had several asks (mainly for more funding), but, as I learned, it was more important to explain to the legislators about what people with disabilities are struggling with and how more funding or supporting a certain bill or issue would help.  I was able to meet with five legislators (or a person from their staff) that morning.  During the visits, I often chimed in on the topic of healthcare sharing personal stories about the direct careworker shortage.  I feel like personal stories make most of an impact on people.  Unfortunately, the visits were only about 15 minutes each, so there wasn’t much time for each topic.  Each legislator was given a folder with information about the Independent Living Center and the topics we discussed.

After we were finished with our visits, we all met back in a huge courtroom to have lunch.  As I was conversing with some of my new friends, I had *that* moment.  How did I end up in the Capitol advocating for issues I wholeheartedly believe in?  How did I become such an advocate?  Twenty-five years ago, who would have ever thought that I’d be using my cell phone to not only converse with friends, but to speak with legislators about crucial issues people with disabilities face?   I couldn’t help but reflect on where life’s path has taken me.  Sure, there have been many curves, but, often, those curves lead me on new paths.

I can only hope we made an impact during our legislative visits that day.  For me, saying it was an eye-opening experience would be a huge understatement.  Being able to advocate on that level was truly amazing.  In recent years, I’ve become more involved in disability advocacy.  I only hope I can continue to do so—I believe it’s my purpose in life! 

***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.