Places such as Six Flags and Noah’s Ark are popular for many families.  Amusement parks and theme parks are usually fun relaxing places for most people.

That isn’t the case for people with physical disabilities.  Rollercoasters and many other rides aren’t accessible.  Even if I could get on a ride with assistance, because of my poor head control, I’m not allowed on most rides.

When my sister and I were younger, we did the Disney parks in Orlando, Florida.  We did a different park almost every year.  Disney is actually pretty accessible.  They do all they can for people with disabilities.  People with disabilities and their families are automatically moved to the front of the lines. I don’t agree with this policy for the most part. It made my family and I feel a little embarrassed when we were escorted to the front of lines when sometimes literally hundreds of people had been waiting hours for a ride or an attraction.  We didn’t feel right that just we got to go first just because I have a disability. 

In recent years, Disney has come under scrutiny regarding the policy. They’ve had issues with identifying people with disabilities and some people faking having a disability just so they could get to the front of the lines.  I believe there are some special circumstances where people should be granted the privilege of being at the front of the line.  When an individual is terminally ill and time is literally of essence, I believe they shouldn’t have to wait in lines.   I also think that there some unique circumstances when people have a very hard time waiting because of their intellectual disability.  I’m not sure how Disney (and other theme parks) can police this.  Maybe people get a note from their doctor and then get a card when they arrive at the park that identifies that they need that privilege.  That’s just my idea.

My family loves to go to Wisconsin Dells.  We love to swim.  Waterparks aren’t very wheelchair friendly. We went to Family Land (now Mount Olympus) quite often when we were little.  It was less hilly and a little bit more accessible than Noah’s Ark.  The wave pool and lazy river are my favorite!  The waterslides are really hard to access.  There are usually steep hills and stairs up to them.  I remember when I was really little, a few times my dad carried me up, handed me to my mom, he went down first so he could catch me when I came down with mom, and then I went down on mom’s lap.  That only happened a few times though because it took a lot to get me up there.  I absolutely love the wave pool because I can sit in an inner tube by myself and ride the waves.  Someone has to be right next to me in case the tube flips, but I just love it!  My parents and I recently went to Mount Olympus again for the first time in 10 or 15 years.  I was surprised that the accessibility hasn’t improved much.  In fact, in my opinion, it has gotten worse from how it was years ago.  Sure, they have accessible restrooms and changing rooms, but with all the new attractions and rides they’ve added (very few of which I could enjoy), it’s much more hilly and hard to get around.

I understand that when most amusement parks and waterparks are developed people with disabilities aren’t normally thought of as prime clientele, but we enjoy and deserve to have fun with our family and friends too.  I’ve recently read about how some amusement parks are becoming more disability friendly.  One theme park in Tennessee added a sensory room for those who have sensory disorders.  Other parks are making similar accommodations. To the best of my knowledge, there hasn’t been a wheelchair accessible rollercoaster made yet.  If there ever is, though, you can bet I’ll be the first in line!

Do I wish I could go on every ride just like everyone else?  Of course I do.  I would love nothing more than to be able to go to Six Flags for a day with a bunch of friends, but that’s just not possible.  I figure life is full of enough rollercoasters I can ride!

***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.

Everyone has stress.  There are multiple causes of stress.  Stress is a normal part of life and is even healthy to some extent.  Like everyone else, people with disabilities have stress.  In fact, I’d even bet we have more stress than the average person.  For me, personally, the past nine months have been very stressful.  Unlike many of my “normal” friends, I’m not worried about things like getting engaged, planning a wedding, having babies, or buying a house.  Instead, I’m worried about things like if my caretaker is going to show up to help me out of bed in the morning, help me use the restroom, or feed me meals.

Back in October, I wrote an entry about how I had to change care agencies because of the rule prohibiting people to hire third-party vendors through IRIS Self-Directed Personal Care (SDPC).  At the time, for many reasons, I didn’t want to take on the responsibility of hiring and scheduling my own staff; therefore, I found and switched to an agency that billed Medical Assistance.  Like I said in my previous entry, it was quite an adjustment because I had to get used to and train all new people.  When I wrote that entry, I was trying to be patient and give the agency time to figure things out.

In the nine months I had the agency, nothing has changed.  It was a complete nightmare.   For obvious reasons, I’m not going to disclose the name of the agency, but I’ve just had a multitude of problems with them.  From staff being late and not showing up for shifts, to having inadequate staff (on multiple levels), to not having a functional backup or on-call system… the list goes on and on. 

In winter, things got so ridiculous one weekend that I did something I’ve never done in all of the years I’ve had care agencies.  I asked my parents to come get me because I couldn’t handle it anymore—I was so frustrated!  Admittedly, I lost my patience.  After that, the agency promised that things would change, but really never did.  In fact, things got worse.  In addition to the issues I listed above, I had problems with theft and having untrained staff come in.  My parents and I tried to work with the agency to try to improve things by offering to do trainings, etc…, but nothing seemed to help.

By the end of March, I was down to have one person doing all of my shifts.  I have 28 personal care shifts and two supportive home care shifts per week.  It’s crazy to have one person doing all of that.  It was unhealthy for both the staff and I.  Plus, I had absolutely no backup staff.  The agency kept telling me that they were working on hiring more staff, but nothing ever came of it.

I began researching different options.  Basically, I found out my choices were very limited as there are very few care agencies in Oshkosh that bill Medical Assistance.  The agencies that did were known to be even worse than the one I had.  I even looked into the Managed Care Option (MCO) to see if I went on that (instead of IRIS) if I could go back to my previous care agency, but, as it turns out, that agency isn’t listed as a “personal care” agency under the MCO.

I was very hesitant about the hiring my own staff because I wasn’t too keen on all the responsibility that comes with it.  However, after talking with some of my friends who have been doing it for years, I decided to give it a try.  I wrote up an ad and posted it on Facebook a few times.  Friends shared it on their pages, and, amazingly, I got quite a few responses.  My mom helped me make some calls one morning, and we were able fill my whole summer schedule in a matter of hours.  I then met with my IRIS consultant and nurse to get the paperwork started.  I also met with each employee to do paperwork.  I’ve had a few hiccups with people (former agency staff) not passing the background check, but, again with some quick Facebook posting, I was able to find some new people.  I realize that hiring and scheduling people is going to be on-going responsibilities in my life now, but people tell me I’ll have much better luck. Only time will tell, but I’m excited to start this new chapter of my life!

So, while I may not stress about the same things that most of my peers do, I certainly do have stress. I’ve realized that stress about finding care staff is going to be part of my life.  I will do whatever it takes to live as independently as possible!

***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.

For the last several years now, every spring, I’ve been asked to present to a special education class at a local high school.  My mom is an administrator in the school district and she likes to have me speak to students as motivation. I talk about my life living with a severe physical disability and how I overcame and continue to overcome the many challenges I face.  I tell them about growing up and going away to college. I share some of the funny experiences I had and how I persevered through tough times. My message to them is to never ever give up no matter what life throws at you.  Oftentimes, I also talk to Kindergarten classes.  At that age, it’s about exposing them to someone with a severe physical disability and having them not be afraid. I get some pretty funny questions from those kids!  In the past, I’ve also presented to college classes.  Education majors usually have to take an intro to special education course, and, since I wasn’t the “typical” student, my story is from a different perspective. 

Maybe it’s because teaching is in my heart and soul, but I admit that I absolutely love presenting to others.  While, personally, I don’t take offense to being called or seen as an inspiration, many people with disabilities do.  To me, I feel like it’s my underlying duty to inspire people. If people are inspired and encouraged by seeing me lead a successful life despite all of my circumstances, I’m all for it.  They may not like it, but I’m inspired by my friends who have different abilities.  I guess, personally, I just don’t see the issue with being seen as an inspiration.   

That said, most of time, I don’t want to standout just because I have a disability.  I know that sounds contradictory.  Let me try to explain.  Nobody likes to have attention drawn to their flaws.  While I like to present about living with a disability, on an average day, I don’t think about my disability. I don’t want to be seen as an inspiration just because of my disability.  I want people to be encouraged by how I deal with my limitations.

Sometimes, I think disability awareness and advocacy is taken too far.  For example, I have mixed feelings about disability awareness days.  Days such as “World Down Syndrome Day,” “World Cerebral Palsy Day,” “Epilepsy Awareness Day,” and “Autism Awareness Day” are at the end of March and the beginning of April.  On one hand, bringing awareness to disabilities is a great thing. The more ways we can get society as a whole to accept and include people with disabilities the better. On the other hand, though, wearing a certain color and/or a pin (which is often suggested on these days) isn't going to cure these disabilities. In fact, as I said, drawing attention to a person's disability is--in most cases--the last thing the person wants.

The notion of “inspirational porn” has been a controversial topic on the internet for awhile now.  It’s when media outlets commend and do stories about people with disabilities doing “normal” things. Again, I have mixed feelings about this too.  While I agree that some stories seem excessive, I think it’s important to share success stories about people who have disabilities with the general population. It promotes acceptance and inclusion.

I think it’s a very fine line between educating about disabilities and exploiting disabilities.  There’s no rule book for this, so we are left to figure it out as we go.  Many people disagree with me on this, and that’s ok.  We are each entitled to an opinion!

***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 they admit it or not, most people daydream at least for a few minutes each day.  We daydream about lots of different things.  I’m not sure this is common among people with disabilities or not, but, sometimes, I catch myself thinking about the “what if” question. What if I didn’t have Cerebral Palsy?  How would my life be?  I candidly admit those questions go through my head too often.  Questions like those run through my head especially when I’m having multiple problems solely related to having a disability which are preventing me from a “normal” life.  I also find myself pondering about those thoughts when I witness friends and family members reaching significant milestones in life that will likely never happen for me.  I hate when I catch myself asking those questions because it does me absolutely no good.

Cerebral Palsy (CP) is a condition that appears in infancy or early in childhood that affects a person’s body movement, muscle coordination, and balance.  It’s often caused by a lack of oxygen to the brain. Due to complications during birth, I was without oxygen for eight minutes. At one point, I was given my last rights by a minister and was even pronounced dead. Doctors were able to revive me, but due to the lack of oxygen, I was diagnosed with Athetoid CP when I was three months old.  CP isn’t a progressive condition—meaning it doesn’t get worse (or better) with time.  Treatments, such as therapies, help enhance the person’s quality of life, but, currently, there isn’t a cure for CP.

I’ve always been thankful that I’ve never experienced life without limitations as opposed to acquiring a disability after living life without one.  I was born with CP, so I’ve never known life without it.  I think it would be much harder to acquire a disability after living without one for any amount of time.

In many of the Facebook groups and online disability forums I belong to, a common question that frequently comes up for discussion is, “if a cure became available for disability, would you take it?”  Unlike many people, I think I would take the cure for CP.  Many people say that their disability is a part of who they are.  I respect that, but, for me, that’s not the case. I’ve always said yes, I accept I have CP, but it doesn’t define the person I am.  Of course, I’d have to take the risks and side effects into consideration, but, for that reason, if a magical cure became available, I think I would take it.

Albeit, “being cured” is almost impossible to even fathom, but admittedly it’s something that does cross my mind fairly often. I imagine who I’d be, where  I’d be, and what I’d be doing if I didn’t have CP.  Of course, my imagination is likely not very realistic because I dream I’d have the perfect life, but I know that wouldn’t probably be the case—nobody has a perfect life.

Although, I’m not an overly religious person, I do believe that there’s a reason I was brought back to life after eight minutes. I don’t know that I’ll understand the full reason as to why I was revived and given extra challenges while I’m here on earth, but I believe someday that I will find out. I’m slowly finding out that two of my purposes in life are to advocate for people with disabilities and to encourage others to persevere no matter what life hands you. I’m sure that there are more purposes, but those two seem to be most prevalent.

When those “what if” and “why me” questions start floating around in my head, I try my best to think about my purpose in life.  It’s definitely not easy to do, but I realize that I may have a different purpose in life than many of my acquaintances.  I’ll likely never do things like get married or have kids, but that’s ok because I’m meant to do other things like educate people about disabilities and encourage them to never ever give up.

Science is getting closer and closer to finding cures for many diseases and conditions.  Maybe not in my lifetime, but, someday, I believe there will be a cure for CP.  Until then, we have to try to make the best of the abilities we do have, and, live life to the fullest. 

"I'm a person that just happens to have a disability, but that doesn't mean I'm a disabled person." ~Marilyn Gould

***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.

I always look forward to the beginning of March.  Besides during dinnertime (I love Family Feud), the TV normally isn’t on much in my apartment.  However, in March, that changes.  I love watching the March Madness basketball tournaments.  I setup a bracket challenge for my family and friends;  I follow the games pretty close.  That said, basketball isn’t the only TV I watch in March.  For years now, if I’m home, I watch the CP Telethon; it’s always the first weekend in March. You see, although it has completely changed over the years, it brings back memories.  When I young, I was on a couple telethons.   I started private physical therapy when I was eight months old and it was associated with United Cerebral Palsy (UCP).  The telethon used to raise money the UCP organization.  UCP has since disbanded; the telethon now raises money for the CP Center in Green Bay.  Nevertheless, watching it makes me reminisce. While watching it, I usually post something on Facebook and tag my first physical therapist and a few of my friends who had therapy with me.  It’s amazing to think about how far we’ve all come.

It also makes me reflect on all of the therapies I’ve had in my life.  Cerebral Palsy, which is the condition I have, has various types and severities. Obviously, outcomes of therapies and treatments widely vary based on individual circumstances.  With therapies, some people are able to learn skills to lead almost a completely “normal” life.  Therapy can help people learn how to do things such as walk, talk, dress, and feed themselves independently.

I happen to have pretty severe physical limitations, so for me, therapies were more about learning how to do things functionally and adapt as well as doing range of motion exercises to keep my muscles loose.  For the first few years of my life, my parents drove me to Oshkosh (about 30 minutes from Fond du Lac where we lived) five days per week—often early in the morning before work and school—for physical therapy.  On the days I didn’t have therapy, my parents often worked with me at home.  Things such as weight-bearing on my legs and arms, working on head control, and sitting unsupported were just some of the things I worked on.

In addition to receiving physical therapy privately, I also received physical, occupational, and speech therapies at school.  When I started Kindergarten, private physical therapy was moved to after school a few days per week.  School therapies were focused on educational based goals.  Oftentimes, speech and occupational therapy worked together to find the right assistive technology equipment for me.  As I got older, school therapies were cutback so I could participate in regular classes.  Speech and occupational therapy would step in when it was time for a new communication device or if I needed support in the classroom.

Private physical therapy was also gradually cutback.  Homework and after school activities took priority for my sister and I.  It was important, though, for me to go therapy once per week.  If I missed a week, my body would feel it.  At UW-Whitewater, there was a physical therapist on campus.  I went twice per week to get stretched out.  I scheduled the appointments, but, if I didn’t show, the therapist wouldn’t chase me down; it was my responsibility to go.  When I was home in summers, I’d go to therapy once per week.  That continued after I graduated until the insurance company decided it was “preventive” instead of “rehabilitative.”  In other words, in their eyes, more therapy wasn’t going to improve my condition. 

Even though, I never took independent steps or anything like that, I did make some significant strides thanks to physical therapy.  When I was little, with some assistance, I was able to use a walker to take a few steps.  I also learned to crawl when I was in third grade.  In fact, one Christmas morning, I managed to get myself out of bed, onto the floor, and crawled all the way down to the living room by the tree.  To this day, my parents have no idea how I did that. Unfortunately, due to my body getting older and not getting therapy, I’ve kind of lost those abilities.  Those are just two of the many examples.

Oftentimes, I wonder why insurance companies stop paying for therapies when people want to try to improve their abilities. It doesn’t make sense to me. I haven’t had any physical therapy since September 2012 (when Medicaid approved eight sessions after a major surgery).  Although, my body has gotten used to it, I know I’ve lost some strength.

All that said, I wouldn’t be where I am today without all those hundreds of therapy (physical, occupational, and speech) sessions over the years.  Thinking back, I feel bad because many times I remember complaining about having to go to therapy. Now I realize what good all of it did.  My younger sister is now an occupational therapist.  Sometimes, she tries to suggest things to help me, and, admittedly, even though I know what she’s talking about, it’s really hard for me to take therapy advice from my baby sister. She and I are working on finding a happy medium!

It’s interesting to reminisce about all the therapies I’ve had.   Sometimes, I wonder if I’d had more therapies, would I have more abilities?  Probably not.  Did all those hours of therapy really pay off?  I think so!

***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.

Often, February is thought of as the month of love.Yes, this is because of Valentines Day.Like many others, I like to refer to the holiday as the Hallmark holiday or Singles Awareness Day.Personally, I believe that we should show love and affection to people we care about every day.Why do we need a special day dedicated to it?Shouldnt it be every day?Regardless, whether you choose to celebrate Valentines Day or not, thanks to advertising, we are often forced to think about our love life around this time of the year.

Ive shared in the past that I was raised to believe I should and could do everything just like my able bodied peers.So, when my friends started dating, in my mind, I should have too. In junior high and high school, just like other teenage girls, I had crushes on boys.For school dances, even though, I never had a date, I attended every dance with a group of friends.I was incredibly blessed to have a group of girlfriends who made sure I was included.That said, like most normal teenagers, they went on dates and slow danced with guys.I remember being and acting happy for them, but then crying to my mom when I got home because I wanted that too.I should mention I had a great guy friend who would take my chair and spin me around at dances.It was great, but I knew it wasnt the same as slow dancing. It was during those years when my mom first explained that it was going to be harder for me to find someone special because of my disability. She said it would take a very special man, but she has encouraged me to keep trying and not to give up hope.

In my last entry, I discussed how the Internet has enhanced my life in many ways.One thing I neglected to mention is how the Internet has opened up the dating world for me.I hesitate to share this story because it doesnt sound very appropriate due to us being young, but it shows how the Internet can bring people together.As I mentioned in my last entry, when the Internet first became popular, I joined many egroups related to disabilities.Through one of those groups, I met a man that was close to my age who had very similar limitations and circumstances. When we first met, we were 13 and 14 years old.We talked through instant messenger. It was really neat because we had so many similarities.Being teenagers, we realized itd be cool to date.He lived out of state, so our dating experience consisted of chatting online.After chatting for awhile, we wanted to meet in-person.My family decided to take detour on our way to a family reunion one summer so I could meet him.I wish I could say it was love-at-first-sight, but it was really more of a unique connection because of our similar circumstances.Our families spent the day sharing experiences and stories with one another.It was very neat to connect with someone who is so like you.After we met, we dated on and off for a couple years, but, due to distance among other factors, it didnt work out.We still are friends and occasionally talk today.I think well always be friends.

Im on a couple online dating sites to try to meet people.When I write my profile for those, I always fully disclose that I have a physical disability and that I need assistance with all of my basic needs.Im very aware that disclosing it puts me at a huge disadvantage, but I feel its crucial to be honest with people regarding my situation.If people cant see past my disability and see me for the person I really am (which Ive learned sadly that many people cant), then I obviously dont want to waste my time.Ive had a few flings I guess you could say, but, unfortunately, those didnt work out.Since I see that most of my friends and family (younger sister and cousins) now have significant others, I think I tend to quickly assume a friendship is something more when its not.

Im often asked if Id rather date someone with or without a disability.To me, it really doesnt matter.If I do find that someone special, hes going to have to adapt to my circumstances and vice versa.I have friends with disabilities who have significant others with and without disabilities.I guess it really just depends.

For me, personally, the whole relationship issue really didnt bother me too bad until I was in my mid-twenties.I guess that was when I saw many of my friends and my sister begin serious relationships.Nowadays, I find myself with multiple weddings to attend.Although, I love going to weddingsespecially those of friendsI often wonder if Ill ever be a bride.

Due to my circumstances, I understand that the chances are very small, but I can only hope and dream that I find that special someone.My mom has told me many times that its perfectly okay if it never happens; nobody expects it to.Unlike other families, my parents have never pushed relationships. If it happens, great; but if it doesnt, thats okay too.Having said that, though, it doesnt mean I dont want it.Ill never give up trying to find a soulmate. I think that by me having the desire to have a romantic relationship with someone shows just how normal I really am.

So, no, Im not a big fan of all of the Valentines Day hoopla.Id like to think of every day as Valentines Day because I love my family and friends all of the timenot just on a certain day. If I ever happen to find that special someone, maybe my opinion of the holiday will change; until then, though, I just think of it as day to love my family and friends a little more!

***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.

Often, I hear people ponder the question, What would we do without technology? Most of the time its meant as a rhetorical question I think because everyone knows that technology has completely changed how the world works. I often laugh when reading those Do You Remember? posts on social media that are about old technology we used to use. Not to age myself, but I remember using Apple G2 computers, using a HUGE adaptive keyboard to practice typing the alphabet and numbers on a blue and white computer screens, and inserting floppy disks to play games like Number Munchers. To think that was a mere 25 years ago is unbelievable! The advancements in technology have been truly amazing. People say they couldnt live without technology. For many people with disabilities, that statement is true on another whole level; technology has opened up a whole new world for many of us. We depend on it.

Its almost unfathomable to think that the Internet was really just beginning to surface my last year of elementary school. In junior high, I remember learning how to research things using browsers such as AOL, Excite, and Netscape. Ask Jeeves was the coolest thing. It wasnt until we got dial-up Internet at home that I really realized the scope of the Internet. I was introduced to email and that opened up a new world for me. I cant use the phone very well (my disability effects my speech), so to be able to communicate with friends and family via email was great for me. Soon, I discovered egroups which connected me with people with disabilities from all over the world. I remember getting so mad when someone needed to use the phone because Id have to disconnect. It was like Christmas when we got Ethernet and could be online all the time. I gained so much independence being able to access so much information and so many resources on the computer.

Instant messengers were another life-changer for me. Like email, it gave me another way to communicate with family and friends; only this allows for instant communication. When messengers first came out, like every other teen I had the three main messengers: AOL Messenger, MSN Messenger, and Yahoo Messenger. It was so nice to be able to hold actual conversations with my friends. Nowadays, I use Skype as the main way I communicate with my family. Online chatting has helped me in other ways as well. More and more companies are starting to have a live chat option on their websites. This is very helpful to me because rather than having to depend on someone to make a phone call for me to solve a problem or answer a question for me, if the place has a chat option on their site, Im able to do it myself.

Things like online shopping and online banking have also been huge for me. Rather than having someone write out checks for bills and mail them, I pay all my bills myself. Although, I do prefer to shop in stores, I do a fair amount of online shopping. Its nice to be able to have that option when Im unable to get out. Also, online services such as Netflix and restaurant online ordering (for delivery) have been really great for me. The simple fact that I can watch movies is awesome (I dont have someone physically put discs in a machine for me). Ive found websites where I can order a meal, pay for it, and have it delivered all online. It sounds like a simple task to most people, but when youre not able to use the phone, being able to order out using the Internet is pretty neat.

The whole social media movement has been incredible for people with disabilities. I remember when my friend first showed me Facebook and helped me sign up. Back then, it was very basic and not many people were on it. As it grew, I realized what a great outlet it was going to be for me. For many people with disabilitiesmyself includedits often difficult to get out socially and connect with others. Ive found that social media is a great way for me to socially and professionally connect with others. Yes, Ive learned you have to be careful about what you post, but its amazing who all Ive been able to connect and stay in touch with. Professionally, obviously the Internet has been crucial for me. I honestly have no idea what employment options Id have without it.

Besides computers and the Internet, there have been several other technological advancements that have enhanced the lives of people with disabilities. I cant even begin to list all of the assistive technology equipment Ive had in my life. From the many communication devices, to power wheelchairs, to van lifts, to adaptive tables and keyboards, to cell phones and the many different apps the list goes on and on. I can honestly say I depend on technology to live my life. Its hard to fathom what my life would be like without it.

Whats next? I believe were just at the tip of the iceberg with technology. Its to even imagine how things will be 50 years from now. One thing Ive been following pretty closely is the evolution of self-driving vehicles. Theyve already developed ones in the UK, and theyre in the testing phases. Im not sure Ill see a handicapped accessible self-driving vehicle in my lifetime, but someday there will be. When that happens, it will bring a whole new level of independence to those with disabilitiesfreedom I cant imagine! Im beyond fortunate to be living in this era of revolutionizing technology; Im excited to see whats next!

***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.

Tis the season!Another holiday season is upon us. No matter what or how people choose to celebrate, the holidays often cause at least a little stress for most. Whetheritis tackling the chaos of Black Friday to get the best deals, waiting for hours in airports for delayed flights, spending hours trying to get the decorations just perfect, or cooking for hours on end, this time of the year can often bring on added stress.For people with disabilities, its no different.As a matter of fact, I read an article awhile ago about how the holiday season can often be more stressful for those with disabilities and even cause some depression.As I get older, I couldnt agree with this more.

Ive written before about how just because I have a disability, I dont see myself any different.I shop for gifts.I decorate my apartment.I send out Christmas cards.Sure, I need assistance completing these tasks, but I enjoy doing these. For years now, my mom and I have had the tradition that we shop on Black Friday. We look through the ads, make our lists, and plan out where were going the night before.Many times, we often arent even after the doorbusters or anything.You see, since I live on my own and because, for various reasons, I dont have the opportunity to get to the mall and other stores unless Im with my family, I usually do most of my holiday shopping on Black Friday.Yes, I do some shopping online, but I really enjoy getting out.It has become a great tradition for Mom and I.

This year, instead of having one of my care givers help me decorate my place, I asked two of my friends to help me.They were former care workers and are now friends.They came over, had dinner with me, and helped me decorate.We had fun laughing and catching up.I dont get opportunities to socialize very often, so it was fun.I admit, I felt guilty when I asked them if theyd be interested in helping me because I never want to seem like Im using my friends. Ive learned over the years, though, that true friends dont mind helping me.

As always, I will be going to my parents for the holidays.Ill spend over a week with them.During that time, Ill get to see friends and family, go out to eat, shop, and be social.I know Im incredibly blessed that my mom and dad are still able to take care of me.There will come a time when that wont be the case, and I might have to spend the holidays by myself.That saddens me. I know my sister will always try to include me in her life, but I never ever want to be a burden to her.As the years go on, those thoughts cross my mind more and more.

Im big on traditions.My family doesnt have many, but I like the ones that we do have.Over the years, they have had to change.My sister has moved on in life.Currently, she lives out of state and has a significant other.Shes coming home for Christmas this year which Im excited about, but, like we have for a few years now, my family will have to share her.Shell split her time between our family and her boyfriends family.Even though, I really approve of (Im the big sister) and have come to love her boyfriend, Im still not used to having him around all of the timeespecially over the holidays.I know its a normal occurrence in life, and Im truly happy for my little sister; its just hard sometimes because I know that its very likely something that Ill never experience.

Same goes for family get-togethers over the holidays.As Ive mentioned before, Im the oldest cousin on both sides, so when I see my younger cousins dating, getting engaged, getting married, and having babies, it can be hard.Again, its not because Im not happy for themI amit just can be very difficult to witness because its something I desperately want, but probably will never happen due to having severe limitations. Im not giving up hope; Im being realistic. When I have moments during family gatherings, I try to sneak away to a private area for a few minutes to compose myself.My mom, dad, and sister understand my feelings and do their best to console me and bring me back to the festivities.Im pretty good at seeing happiness through other peoples eyes, but, sometimes, I admit, situations can be too much for me to handle.

The holiday season brings different kinds of stress for everyone.There are many different ways to deal with stress.For me, personally, I find it helpful to remember all things I do have and think about all of things Ive accomplished despite my disability.Admittedly, sometimes its really hard to do, 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!

I wish all of you happiness, hope, and a time to think of all the ways you are blessed and have blessed others!

***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.

Growing up, I rarely thought of myself as having a disability. Much in thanks to my parents, I was treated as normal as possible. Obviously, my disability was (and still is) evident in many facets of my life, but I grew up learning not to dwell on it. I couldnt use it as an excuse. Sure, things like regular therapy sessions, wheelchair appointments, school IEP meetings, and occasional telethon appearances were part of our routine, but that was just the way life was for us. My family never sent me to respite care for weekends. I never went to any camps for people with disabilities. I certainly could have done those things; instead, my family chose to include me in vacations, outings, etc

When I was really young, I received Birth to Three services, and I was in Early Childhood classes. From Kindergarten on, though, I was in all regular education classes. With the exception of pull-out therapy sessions and a couple modified gym classes, I was in classes with my peers. I had accommodations as needed, but I had the same expectations as everyone else. Classmates came to see past my limitations and treated me just like other kids. At UW-Whitewater, it was a really different environment because so many students had disabilities, but, yet, the majority of students didnt have disabilities. Im not sure how to explain it, but I felt just like one of the students there as well. In other words, I didnt feel singled out most of the time.

It wasnt until after I graduated from college that I really felt the true impact of my disability. I guess one could say the real world hit me hard. Everything from finding an apartment, to finding cares, to finding employment, my limitations seemed to get in my way. As always, though, with help and encouragement from my friends and family, I persevered and fought until I reached my goals. Thats still true today. Giving up isnt an option in my world because I have set pretty normal expectations for myself regardless of my disability.

When I found out InControl Wisconsin was going to be an exhibitor at this years Self-Determination Conference, I was so excited! My mom made arrangements to take off work so she could go with me as my caretaker. We were there Monday through Wednesday. I had been to the State Transition Conference as a presenter a few times before, but this was my first time going to the Self-Determination Conference. I was very impressed with all the different activities and sessions they had. For me, personally, the section about the ABLE (Achieving a Better Life Experience) Act was particularly interesting. Once the regulations are in place and it takes effect in Wisconsin, it will potentially change the lives of many people with disabilities. Being able to put money aside for essential necessities without losing benefits will be so beneficial for so many people. It was very interesting learning about it.

It was great reconnecting with many friends and meeting so many new people at the conference. I really enjoyed meeting so many people that Ive communicated online with. That was awesome! It was also amazing to see so many self-advocates come together. I kept thinking of how impressive it was to have so many people come together to support people with disabilities. I had a great time networking! By the third day, though, I had to keep reminding myself I was there for my job.

You see, Im not used to focusing on my disability 24/7. Even though, I work in the field now, I rarely think of myself as being a person with a disability. Its not that Im ashamed of itIm totally notI just dont normally draw attention to it. Obviously, since the conference was all about people with disabilities, I couldnt help but focus on how my disability affects my life. It wasnt a bad thing. In fact, I learned a lot of valuable information and got some helpful ideas that I hope to use in my personal life. It was just that I had never experienced three full days where I mainly focused on my disability before.

Yes, I was there for work, but, at something like that, you cant help but think of your personal life. By the last day, I pretty much had had enough. Though, the conference was great and it was terrific networking with so many people, I was tired of focusing on my disability. On the way home, my mom and I had great conversation about this. I told her that I felt like I wasnt a great advocate because I dont like focusing on my disability all of the time. She reminded me that I am a good advocate because I continue to fight to make my life as normal as possible. She explained that the main reason I felt like that is because our family never has focused on my limitations, and shes right.

It was certainly an interesting few days. I am really grateful I got to go to the conference. It was a great opportunity for me to network with lots of people and share information about the Networks. While, sometimes, its helpful to attend a conference about a topic to gather information and network with others, Im thankful that my life doesnt revolve around my disability. I love working for an advocacy organization and being part of various advocacy efforts, but I have other interests as well.

Do I still consider myself a strong advocate for people with disabilities? Absolutely. Are there others who advocate better than me? Of course, there are many! We each do what we can, and together we make things happen for people with disabilities!

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.

Change is hard on everyone. People say transitions are harder on adults. I have heard that change is even harder for people with disabilities. Maybe its because Im older or maybe its just me, but over the last couple months, Ive realized just how true these statements are.

Ive shared that Ive been an IRIS participant for over six years now. I love being able to self-direct my budget and make choices about my life. In fact, I believe everyone should have the option to self-direct. When I was living with my parents in Fond du Lac after college, we tried to find care agencies that would bill Medical Assistance for personal cares. As I explained in a previous journal entry, that didnt work. Agencies could not staff my shifts. My IRIS consultant at the time suggested I switch to Self-Directed Personal Care (SDPC), so I could hire my own staff. There was a waiting list for it, and by the time I got on it, we had heard that an apartment had become available in Oshkosh. I didnt realize it at the time, but we were very fortunate that the care agency associated with the apartments billed SDPC. So, until I moved in, I just hired my parents to do my personal cares (they obviously had been doing them anyway).

Things had been going so well with the care agency for four and a half years. Sure, there were ups and downs and bumps in the road, but, overall, it had been going very well. Over the last year or so, my IRIS consultant and nurse had been telling me that changes to SDPC and that we may have to make some changes. The change was that SDPC was no longer going to allow third party vendorsthey were only going to allow people to hire their own staff. I knew this wasnt a feasible option for me, but I wasnt too concerned because I thought the agency I had was a Medical Assistance provider. So, when I got a letter in the beginning of July saying this was indeed true and that I had until October 15^th to make the switch, I wasnt overly concerned as I thought I could just switch back to Medical Assistance for personal cares and keep my agency. I setup a meeting with my agency and my IRIS consultant and nurse for mid-July. This was when we found out that the agency wasnt a Medical Assistance provider.

This meant I either had to find my own staff or find a care agency that billed Medical Assistance. Unlike many other IRIS participants, I dont ever want to hire family and friends to be my primary caretakers. It just doesnt sit right with me. For some, its a great option, but thats not the case for me. I also know I could hire out myself by advertising in places such as newspapers and online, because of the amount of hours I need and various other factors, this isnt a feasible option for me. Therefore, I had to find an agency that billed Medical Assistance.

Thankfully, right after the meeting in July, my parents and I got on the ball right away and setup an interview with an agency that was a Medical Assistance provider. We met with them in late July. It was decided Id go with this agency. The agency had to hire multiple people to cover my shifts, so we knew itd take awhile to setup. After many stressful weeks trying to figure out what was going on, I finally started with the new agency last week.

Most people don't understand the gravity of changing agencies has on me, but it's truly life-changing for me. I kept asking my mom how I ever started at UW-Whitewater. She said, "Stac, you had no idea what you were in for," and she's exactly right! Switching care agencies means starting over with all new people and learning a whole new set of rules. Care agencies try to prevent clients and workers from becoming friends because its not ethically correct, but its almost impossible not to become friends with the people taking care of you. Theres a certain trust factor when it comes to personal cares. I have to get to know and train all new people. This is not an easy task for anyone, but its especially hard when youre non-verbal. I typed out detailed instructions for each care shift, but even with those, I have to get used to each new person and vice versa. Its pretty stressful and exhausting!

The change not only affected my life; it affected my parents life as well. They had an out-of-state trip planned in October. Since I was going to be with a new care agency, my mom and dad didnt feel comfortable leaving me behind. Originally, I was going to go with them, but, as the start date got pushed further and further back, we realized that cancelling cares for over a week right away probably wasnt the best idea. In the end, my parents decided to stay closer to home in case Id need anything. Im grateful for their sacrifice.

While personally I dont understand or agree with the third party vendor rule (I dont know how limiting who we can hire is self-direction), Ive accepted it and moved forward. Change, whether its big or small, isnt easy for anyone. We have to learn to adapt and move forward one step at a time!

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.