#dear cp

[notdifferent-justme]

My blog first, and foremost, is about my personal  experience:

Writing Dear CP letters, or speaking to my disability directly is not meant to exclude anyone, or say that my experience is exclusive to CP alone. It is meant to be an outlet for what I’ve been through as a person with a disability.

My blog is meant to be about me before anyone else. 

I know, growing up in a world where you’re a minority can often make you feel like you’re the only one who feels and thinks the thoughts in your head. Before I started this blog there were so many weird quirks about myself that I thought were ‘just me being weird’ but later realized were symptoms of my disability that I was never taught.

Things that made me feel like an outcast, were common occurrences in the CP world. It wasn’t strange it was normal. And without people willing to share their personal experiences, I never would have learned that. 

When I first started this blog, it was simply a way for me to talk about my life, and reconnect with my disability. Sure, I hoped people would connect with it along the way, maybe it could help someone younger than me feel less alone or less awkward, but I never opened this blog to be the voice for all disabilities and disabled people alone.

I’ve been receiving messages more frequently that some of my posts are isolating, excluding, that I need to consider experiences other than my own.

But that’s just it, my blog is my own experience. 

Writing letters to my disability and sharing my thoughts, was never meant to exclude anyone or say that only people with CP experience this. My blog is meant for anyone who can relate to those feelings no matter their disability. If you can relate to my experiences and feel less alone then great. But if not, there are other bloggers with different experiences for you to discover as well. Please, respect mine and realize I am just one person and I cannot possibly consider every person’s individual experiences within my own. I am a blogger, not the face of the disability community as a whole.

[notdifferent-justme]

Dear CP: Awareness, The Cure, and Adults With CP.

CP awareness month comes around every March. We dress it up in green ribbons and butterflies and for 4 weeks a year, we get to sit in the spotlight. I’m all for awareness and disability pride but, somewhere along the line, our mission for awareness became blurred. Do a quick Google search on CP awareness and tell me what you find in the images….

Along with “I kick CP’s A$$” and, “Someone I love fights CP” stickers, you’ll probably see a bunch of Hope for CP images that include either a green ribbon or a butterfly. If you haven’t guessed by now CP, green is your color. It is the color of hope. Hope that we will find a cure for you someday…. This is where things get complicated. I don’t want to cure you, CP. At least not the version of you that lives inside of me. I don’t believe I, “kick your A$$” or fight you, because I am not at war with you. If anything, I rock you, like a stylish haircut or a cool pair of shoes. You are a part of my expression as a person.  I’ve grown up with you. I don’t know anything different so, I can’t imagine living a life without you and that’s ok. But, there are people out there who feel the opposite, and that is fine too. However, CP awareness month tends to only focus on one point of view, the negative side of you. And instead of raising awareness for ALL people with Cerebral Palsy, CP awareness month tends to be geared towards children and finding a cure for them. But, the probability of CP being cured anytime soon is so small, we can’t just focus on raising awareness for a cure. We need to plan for the likelihood that those kids will eventually grow up into disabled adults, like me. Adults that need awareness so that we can fight for a better quality of life. Adults with CP still need access to better resources. We still need access to jobs and schooling. We still need better accessibility overall. And we still need better health care and research for CP over the age of 21. Adults with CP tend to get pushed aside and forgotten about once they’ve aged out of childhood. This happens a lot in the medical field. The truth is, not much is known about how CP progresses through adulthood. We are told CP doesn’t change over time, but most of us know now that isn’t true. If you do any sort of research on CP, anything you find will more than likely say “children with cp” and if you do find an article that mentions adults, it will probably say something along the lines of “may cause,” “thought to,” or, “possible.” Because the truth is, doctors really don’t understand CP and how it progresses through adulthood (and yes, it does progress and change.) Lack of research is to blame for this, yes. But, doctors are responsible as well. Most CP specialist/surgeons who are trained specifically to treat patients with CP are pediatric doctors who typically stop treating their patients by the time they are 23. Many, if not most, resources for people with CP only work with kids until their early 20’s. Once you reach that stage in life, the support system starts to fall away. Unfortunately, it’s around this time that many people start to see a significant shift in their CP symptoms.

CP is incredibly hard on a body. The years of spastic, tight, muscles combined with the constant use of mobility devices damage the body more than you think. Because of this, adults living with CP discover, as they age, they have more pain than they had in the past. We age faster. We are more likely to develop chronic pain and arthritis at a younger age. This is why I do not believe a cure would be possible for me, and so many others. Even if we could find a cure, that cure would only erase the CP part of me. The damage in my brain. You can repair my brain but you cannot reverse the 25 years of damage done to my body. Fixing my brain doesn’t erase my damaged muscles, my hip problems, the pain, the potential for arthritis and more. These problems would remain even with a cure because I’ve had my disability for too long. The cure would only erase my identity. Does that mean I believe a cure is useless, or even pointless? No. It could be possible but, the cure would have to repair the brain damage before the muscles had time to finish developing and become permanently damaged. I believe for the cure to ever work the way it is intended to, the only possible candidates for a cure would be infants up to 2 years old with minor to moderate CP, and no other existing damage from stroke and so on. Curing CP is not just a matter of reversing brain damage. Even with a cure, there will always be exceptions. People who will not be able to take it, or don’t want it. So, regardless if a cure ever happens, there will always be people living with Cerebral Palsy. Kids who will grow up into adults. Adults who will never be cured. People who will need awareness and a better understanding of their disability. Through every stage of their life. Dear CP: I will be disabled for the rest of my life, regardless if a cure exists in my lifetime.

Love,   Me.

[notdifferent-justme]

Dear CP: “You wouldn’t Understand....”

As I get older, I become more aware of how people look at me as if I am a child who doesn’t know anything. All my life, I’ve been looked down on and treated as if I am not as smart as I am. I’m disabled so that must mean I’m stupid, right CP? I grew up thinking I was dumb and learning disabled because I was put into special education classes. Because I didn’t learn the way others did. Because I was terrible at math. (I found out when I was older that many people with CP struggle with math. I never knew!) It took me a long time to realize I actually am a smart person. I am creative. I have great problem-solving skills and, despite struggling with it as a child, I love reading and read a lot! But still, I am treated as if I’m dumb. As if I don’t really understand anything. Because I have Cerebral Palsy. Because I don’t have the same struggles and responsibilities as adults my age. How could I possibly understand? I think the idea that I don’t understand comes from being infantilized. I’ve talked about this before, CP. Disabled people are often seen as children because of their disabilities and therefore are treated as children. This is also to blame for why people think I can’t comprehend things.   They see me as a child. A child who still has a lot to learn. Let’s talk about learning. When I think about people treating me like an ignorant child, I think of a few specific moments. First was my 12th grade year, a few months before graduation. At the time, I was involved in a program where students could work as teacher-aids for learning/physically disabled students, and Para classrooms. We were called T.I.E.S, and for one class block a day we were assigned to a student or a classroom. We would sit in on the student’s class and help them read and comprehend their work, or help them with any sort of accommodations they needed to participate in class. The T.I.E.S program was a big deal. To even fill out an application, you had to have good attendance and good grades. If your application was approved, you then had to be interviewed by the T.I.E.S program leader and they would decide if you got “The Job” or not, and what type of classroom you would be assigned to. I was assigned to a Para classroom where I acted as a teacher-aide and helped assist several students with a range of disabilities. As part of our “final exam” for the program, we had to write a 10-page research paper on any disability we chose. I, of course, chose to write on Cerebral Palsy.   It just so happened that my special education teacher was the head of the ties program, so every day during my special ed class period, I would go into her classroom and work on my paper. I took it very seriously and spent months doing research, editing, using proper medical terminology, and making it the best paper it could be.  When I was finished, I asked my teacher, the T.I.E.S leader, to proofread my paper before I turned in my final copy. I will never forget the day she returned my paper, CP. She sat down next to me and after reviewing a few grammatical errors she looked me right in the eye and said, “This is a really smart paper.” I beamed inside. “Did you plagiarize it?” My heart fell. I stared at her confused. She had watched me sit in her classroom for months, writing this paper myself. “No, I didn’t plagiarize it,” I told her, truthfully. Still, she didn’t believe me. She continued to question me. Did I know I couldn’t copy and paste research? Did I re-word my findings? Then how did I know how to use correct medical terminology like the terms in my paper? I continued to defend myself the best I could until finally, she said, “Are you aware I can submit this paper and have it checked for plagiarism?” It hit me like a slap in the face. She didn’t believe I was capable enough to write this paper on my own. I was a special education student in her classroom. This paper was too smart to be my own. She couldn’t believe it, so she threatened to report me for plagiarizing. I felt so defeated CP. It didn’t matter that I had written my paper about you. That I had grown up with you and knew you from the inside out because I was raised to be able to talk about you. It didn’t matter that I knew those medical terms because I had grown up hearing doctors use them around me. I was just a special education student. I could not be this smart on my own.   In the end, I was not given the grade that I deserved on the paper. This happens all the time, CP. People don’t believe you are capable enough. You’re disabled you can’t possibly be this smart. “Wow, this is great. Who helped you?” Because their first reaction is always that you must have had help. Disabled people can’t possibly be smart, right? Now you sound like the stupid person.

And if I try to defend myself? If I even act confident and say I’m smart… I’m laughed at and told I’m “full of myself” or they say I act like a “know-it-all.” I grew up being made to feel like I was dumb, CP, and if I dare to speak out and have confidence, or feel smart now, I am conceited.   Similarly, a few years later, I was taking a child development class in college. As someone who grew up with much younger siblings, I’ve learned some things about child development. However, my teacher only saw me as a young girl who acted like she knew everything. One day, we were having a group discussion. I remember I raised my hand to shared something I had experienced on the subject. My teacher laughed in my face, in front of the class, and said, “you have no idea what you’re talking about.” I was humiliated. Many of my classmates were older, child care workers, or parents themselves. And even though I was 22 at the time, everyone looked at me like I was some disabled teenage girl, who had never experienced anything and knew nothing of raising a child. My opinions and insight never mattered because “I couldn’t possibly understand.” They never asked how I learned those things. They never thought to ask about my experiences or understand how they may have taught me things along the way. I’m just a child playing adult. I’m not smart enough to know these things. CP, having a disability doesn’t mean that you are not smart, or you can’t learn. Even if you learn differently, or slower than most. You still learn, and you continue to learn throughout your life! Having a disability doesn’t mean that you can’t learn from others, or from books, or the internet. Our experiences and our knowledge as disabled people are still valid, no matter where that knowledge comes from. We can learn! We can teach! And we should be able to share our knowledge without being laughed at or degraded because people think we are not smart enough to possess that knowledge in the first place. If I told you I know that The Titanic sank on April 15th, 1912, would you laugh at me and say, “how could you possibly know that!”   I know it because I went to the library and read books about The Titanic. I know it because they made movies about it. I know it because I’ve heard that date repeated online, by people, in books, and in movies. I know it because I learned it. I’m done being shamed for having confidence in my knowledge and being laughed at for speaking about something I know. I am done dumbing myself down and being made to feel stupid because people think being disabled means you can’t be smart. Dear CP: Yes, I am disabled, but I am not stupid! Love,   Me.

[notdifferent-justme]

Dear CP: The Reality about my Benefits...

“You’re so lucky to be disabled. You get paid without having to work and you get insurance and other benefits for free. It must be so great!”

We’ve all heard a version of this before, CP. Abled people think disabled people have this plushy free ride in life. We have it so easy. Things get handed to us, while others work for what they earn. People scream how their hard-earned money gets taken away so that we can sit on our butts all day and do nothing. But, the funding that pays for my government support isn’t coming out of their paychecks.

They cry how unfair the whole thing is. They envy what little we have and want to take it for themselves.  People intentionally disable themselves so they can hop on our “free ride express.” But, the truth is, my life is not as easy and carefree as it seems, even with benefits.

So, let’s talk about the truth behind my government support, CP. The two main topics I always hear people complain about are: government funded payments and government funded insurance.

First, let’s clear something up. There are several government programs and they vary from state to state. My program, the one that gives me payment support for being permanently and physically disabled from birth, thanks to you CP, does not come from individual employment paychecks specifically. So, no, strangers are not going to work and paying for me to “sit on my butt all day.”

Next, lets cover the basics about my payments and why they are not as glamorous as they seem.

Despite what others think, CP, the amount I get each month is less than what the average person makes earning minimum wage. When you break it down, many people on payment support receive around $10 -20 a day. Maybe less. It all depends. As you can see, this is hardly enough to live on when you are unable to work and it’s your only source of income.

Receiving government payments also comes with a lot of difficult restrictions.  The biggest restriction being, we are not allowed to save, earn, or hold more than $2,000 dollars at any time for any reason. Otherwise, we will lose all benefits and potentially be required to pay back what we have been given.

CP, you can understand how this would restrict your life. We cannot save for a home, a car, or anything that would require us to have more than $2,000 in our accounts at a time.

Similarly, if we decided we want to get married to someone, it is highly likely we would lose all our benefits because their income would factor into that savings rule. This means, by being married, I agree to be completely dependent on my spouse financially. Which also means, I would not be able to divorce if it became necessary.

And people wonder why abuse rates are so high for people with disabilities?

My government payments are also essential to my health and well-being because guess what? If I lose my payments, I also lose my insurance and health care.

That’s right, I only get healthcare while I receive support payments.

So now, let’s talk about this free insurance that makes everyone so upset.

While my insurance is free, it is also very limited. My healthcare does not cover routine dental care, eye care, or physical therapy (which is very important to my overall health living with CP.)

Along with not being able to get necessary routine care, my insurance is not as widely accepted as you may believe. Finding a provider who accepts my insurance can be a struggle and often, my insurance does not offer a complete and updated list of providers I may be searching for. So, I’m left to find a lot of resources on my own. This can cause a lot of stress and frustration, like recently.

Over the last few months, I have been trying to get a new wheelchair. Getting a wheelchair is never a simple process but these last few months have been especially difficult.

First, I couldn’t receive a clear description of what my insurance requirements were to get coverage for a wheelchair. It took several tries before I was clear on what the process was. Then, I struggled with finding a wheelchair company to work with. My insurance could not provide an accurate list.  I called and emailed 6 places before I found one who would accept my provider. Now I’m at a standstill because both my insurance and wheelchair provider requires that I have a PT evaluation done but, because I do not have a regular physical therapist, (because my insurance does not provide me with routine physical therapy) I now have to find a PT office that accepts my insurance and will do the evaluation.

This would be a simpler process if my insurance offered routine PT care to begin with. Don’t get me wrong, I am grateful that I am able to have things like free insurance and support payment but, I would not call myself lucky.

Despite what others may think CP, the reality is that while I receive government care I cannot:

Save for a house

Save for transportation

Earn/Save more than $2,000

Get married

Easily get the care that my disability requires.

Dear CP: Yes, I am grateful. Yes, my benefits do help me. But it does not come without restriction.

Love,    Me.

[notdifferent-justme]

Dear CP: What’s my age again?

      CP, there is something about being disabled that sometimes makes it hard to feel like an adult no matter how old I get.   Even before I reached adulthood, I never felt like I was the correct age. I just always felt like I was one step behind everyone my age. Maybe that was due to the fact that I didn’t have a normal childhood like everyone else. I wasn’t allowed to play on the playground at school with my classmates, I was forced to take special education classes, and I couldn’t join any sports or clubs like my friends. As we grew up, I watched my classmates become more and more independent. They got themselves up and ready in the morning, walked to school on their own, got their lunches and everything all without needing help. On the other hand, there I was still being walked to class every day by my mom, having to have my friends walk me to and from the bathrooms, carry my lunch, my books, everything. It wasn’t that it bothered me, CP, I knew I needed those things to be able to function in school and I loved being able to have my friends help me rather than a Para, but, looking back on it now, it’s easy to see how little things like that could have made me feel immature at times.   Years later, not much has changed. I still rely heavily on others to get through daily life whether it’s getting rides to and from places, cooking, cleaning, you name it I probably need someone to help me in one way or another. CP, when we think of being an adult we think of having a job, a house, paying bills, little sleep and living pay check to pay check. Well, I can tell you that I’ve got the last two things on that list down. It’s no secret that I have one of the worse sleeping schedules ever and my only source of income is SSI payments. However, I don’t have a job, I live with my parents, and even though I do help pay for my fair share of the bills, my family still helps pick up the slack on the things my limited amount of funds just can’t cover from month to month. So yes, I am fully aware of how supported by my parents I still am. It doesn’t help that often times, strangers like to make comments about how special and lucky I am to have such wonderful and thoughtful parents to take care of me. I’ve recently discovered that many disabled people often experience total strangers implying that we should be overly grateful when they’ve seen someone assisting us. This can happen in many different ways with comments such as, “Wow, that’s so nice of them to help you, isn’t that nice?” “What a wonderful parent! You must be really thankful to have them.” While I understand they think they are just making conversation these comments are rude, unwanted and unnecessary. It just isn’t their place to say. What purpose does their comment serve anyway, CP? Do they just want to hear us say how wonderful, incredible, and amazing these people are for helping us? They aren’t superheroes you know…. Not only do these type of comments make us feel uncomfortable, they can have very negative consequences and personally they leave me feeling very childish. Go back and think for a moment…. Is this something you would hear when speaking to any other random adult you just met or, is this something you are more likely to hear in a conversation with a young child? I get this a lot especially at social functions when I need to be assisted with carrying food or cutting my food. “Look at them doing everything for you! What service. Where do I sign up?” I’ve even had people jump in and insist I should say thank you before I’ve even had a chance to speak for myself. How embarrassing! I am a 24 years old I do not need someone following me around saying, “did you say thank you?” People have this notion in their head about disabled people and our mental maturity and capabilities. It’s like they see us as children because we are sometimes dependent on others…Kind of like how a child is dependent on their families’ for care. I think they see our care needs in the same way and, therefore, do not treat us as adults. Anything I do, no matter how small, is seen as a huge feat. “Wow, you must be really smart!” “Look at you, doing things on your own!” Again, CP, are these things you would say to an adult or a child? Everyone is always so amazed when I am independent and quick to judge when I’m not. Another big issue is when people talk to the person next to me before they actually talk to me. They just assume that the person next to me is there to speak for me. Once, my family and I had transferred to a new doctor’s office so we were all there to sign paperwork. “You will need to sign her papers as well,” the nurse motioned to me. “That’s ok I can sign my own papers.” “How old is she?” she ignores me as she turns my mom who informs her that I am 24. “Oh, well then she will need to sign her own papers.” Yes, which I could have told you if you had just talked to me. I mean, I know I appear younger than I am, but I do not look like a child.

Maybe I am the only one who feels this way, CP, but it is really frustrating that I can’t do adult things without being thought of as a child. I can’t even go out and have a drink with my friends without getting funny looks or told “how adorable” I look with a drink in my hand.  Or, getting a handful of annoying questions, “Have you ever drank before?” “How much do you drink?” “Have you ever been drunk?” “You have?! That’s so cute!” No! Trust me there is nothing cute about me being drunk. I just wanted to be treated with the same respect as any other adult my age my age, CP. I want to be seen as the adult that I am.

Sure I don’t act my age sometimes but I am old enough to make my own decisions. I can buy lottery tickets if I want. No one tells me what to do. I go to bed when I want and sleep as late as I want. I can eat ice cream for breakfast and cake for dinner if I choose.   I am old enough to sign my own papers, make my own appointments, have my own insurance and pay for my own things. Sure, people help me but, they are only there to help. They do not raise me because I’m not a child.

Dear CP: I am an adult and I think it’s time people started treating me like one. Love,   Me

[notdifferent-justme]

CP Problems:

The random aches and pains. Like: “Hello. Who are you and where did you come from?”

[notdifferent-justme]

Dear CP: Bikes, Cars and Driving Lessons...

     I still remember how it felt, growing up in my sub, watching my brother and every other child learn how to ride a bike. Sure I tried to learn; my mom spent hours trying to teach me how to ride but it soon became clear that riding a bike just wasn’t going to be an option for me. So I sat on the sidelines seeing kids my age ride their bikes up and down the street, through the neighborhoods, and even to 7-11 all summer long while I wished I could join them. I envied the freedom that they had. Learning to ride a bike was an essential part of growing up. A part that I had to miss out on.

There were a lot of things I had to miss out on growing up because I was friends with you, CP. And, truth be told, it really sucked. It sucked getting to watch my twin learn to swim, ride bikes, and play sports. I hated being left behind because I couldn’t do something that he could. It was so unfair!

When people think of the struggles that come with a disability they often picture a child growing up and missing out on opportunities, not fitting in, being made fun of and not having many friends.   I don’t think they often picture us as adults struggling to find work, pay for housing and everyday needs, or learning how to drive. Now instead of watching everyone learn to ride bikes without me, I’ve had to watch everyone learn to drive and leave me behind once again. I’ve been trying to learn how to drive off and on since I was 18 and it continues to be an uphill battle to this day. At the time I was just about to graduate high school and had been enrolled in a program that helps disabled students transition out of high school and into the adult world. My counselor brought up driving lessons and mentioned that the program could help fund a set of hand controls and special lessons for me if I wanted to give it a go. I’ll admit, I had no interest in driving what so ever. (The idea of it kind of scared me.) I didn’t like the idea of being in control of a piece of metal that could potentially kill me if I made one wrong move. My counselor suggested I at least take the evaluation test for the hand controls and then if I still didn’t want to drive, then that was fine. “Driving will be so important for your future,” she said. “Who knows you may do the evaluation and think hand controls are the best invention since sliced bread!” So I went ahead and did the evaluation, and guess what? It wasn’t as bad as I thought, and so I decided to go ahead with driving lessons. That is where things first started to go wrong.

I had loved the instructor who had first done my evaluation. She was kind, patient, and understanding of my apprehension to driving. She did a great job of helping me through the evaluation and I was really looking forward to working with her for my driving lessons. Unfortunately, when I showed up to my first appointment, I learned that she would not be my driving teacher as I had been assigned to someone else. I was very disappointed. And to make things worse my new instructor was horrible! She would constantly show up to appointments late, NEVER called me by the correct name, would yell and scream at me if I made a mistake, and insist that she taught me things that she never did. Her records were always inconsistent. She didn’t even let me use the gas on my hand control until the 3rd or 4th lesson. And to top it off she would always be distracted during a lesson, doing paperwork, eating lunch, or making phone calls while I was driving. She would even refuse to set up my driving equipment at times until I asked her to. (She claimed she was testing me to see if I paid attention.) Sometimes she would even forget to install a piece of my equipment like my pedal block, or my spinner knob She insisted she did this on purpose as part of my vehicle check before driving but it was obvious she was trying to cover up her mistakes. Really, CP? How could she be serious? I cannot drive without a knob or a pedal block. Do you think I am just going to jump in a car and forget that I need hand controls to make the car move? The worse, though, had to be when I had a lesson with her in the middle of winter right after a bad ice storm. Instead of rescheduling me until the road conditions were better, she said I would drive as usual because I needed to learn how to drive in poor conditions. During this lesson, and I am not even exaggerating a little, CP, I was driving down a neighborhood road, going around a curve, when suddenly she started yelling and screaming. Her window was down so that she could observe my positioning, and her arm was out the window. As she screamed, she banged her hand against the passenger door feigning that I had hit a curb or a mailbox. I slammed my break. “Now what did you do wrong there?” She asked as I panicked in the driver’s seat. “I’m sorry,” I stuttered. “I got too close. I hit something!” “No, you didn’t.” She admitted to me. She opened her door to prove that I was, in fact, the correct amount of distance from the curb. “See, this is what I have been talking about…You need to be more aware of your distances. You should have known you were far enough away from that curb that you didn’t hit anything.” What the hell CP?? What kind of a teacher does something like that and claims it’s a “learning lesson?” It was during this lesson as well that she kept complaining that I had to be careful not to get the car stuck in the snow because, “if you get the car stuck you’re going to have to push it out.” I was fed up, I shouldn’t have even been driving in those conditions and without skipping a beat I said “No, I’m disabled. If I get the car stuck while driving, whoever is in the car with me will be pushing us out or I will be calling for help!” I tried to get reassigned but she was the only teacher available and my program had already paid for lessons so I was stuck until I finished the ten lessons they’d paid for. Once I finally finished the lessons she looked at me and said, “Well, you are obviously not ready to drive. I’m going to have to request that you have more lessons.” I wanted to cry! I didn’t want to do more lessons with her! I called my counselor and asked that she not approve my teachers request for more lessons. I explained what had happened during my lessons and asked if the program could transfer me to another driving company. Sadly, there were not many companies that were licensed to work with hand controls and they couldn’t reassign me until my driving teacher signed my papers over. (Which she refused to do for whatever reason.) There were a lot of phone calls back and forth and fighting with various companies. I was getting really discouraged. At this point I just wanted to learn how to drive because my counselor was right, it would be so much easier if I could get my license and drive. It was a year later before the company finally agreed to pay for my hand controls (They normally wouldn’t do this until you had your license but given the circumstances they relented and allowed me to continue lessons with my own car and equipment.) This made it easier to place me with a new driving school and I had just started feeling hopeful again. My teacher had started out friendly, and I got along well with her. She was a bit of a tough teacher but I thought that was just her taking her job seriously. But a few weeks in, things began to change and I found myself in the same situation as before. She was frustrated that I wasn’t progressing as fast as she thought I should be and always found a way to blame me for lack of progress. “There is something wrong with your eyesight. That’s why you keep drifting. You need to go to the eye doctor.” “I just went to the eye doctor, there is nothing wrong with my eyesight.” “Are you dyslexic? I think you’re dyslexic. This is why you have such a hard time reversing!”

Ok, now that comment really annoyed me! I was tested for every learning disability under the sun throughout elementary school and, actually, it was my teacher who was dyslexic. Which is why I found her teaching method so confusing when trying to reverse. It was my brother who finally took me out and taught me how to reverse like a pro in less than 5 minutes. The next time I got in the car with her to reverse she was almost offended that I knew what I was doing and demanded to know how I had suddenly learned what to do. Once I finished those lessons, the company I was with started refusing to pay for anything more. They’d already paid for over 30hrs of lessons and hand controls. They were not willing to pay for more.

My family took over trying to teach me for a while but they were all too nervous about me driving to really help me improve much. Soon it became apparent that no one really believed I would actually learn how to drive. “Maybe, this just isn’t your thing..” they would say, Or, “I just don’t feel safe with you driving.” And the worse… “I said from the beginning you might have to come to terms with the idea that you might not be able to drive.” But the thing was, CP, no one had actually said that to me at any point during my driving lessons which made me realize, everyone was already betting that I might fail even before I began to drive.

The truth is… I am not the best driver. It is really hard for me but, I honestly believed that it was possible for me to improve over time enough to earn my driver’s license so I could have some bit of freedom. The driving instructor who first evaluated me for the hand controls even told me, “Learning to drive with hand controls can sometimes be like learning to rub your stomach and pat your head.” I don’t think the hand controls are hard to use really, the hardest thing for me, which makes learning hard, is there are so many things you have to focus on at once. And having a CP brain can make focusing on multiple things at once a challenge. My reaction time is also a bit slower and those things combined with hand controls makes learning a difficult thing for me. To be honest, I never wanted to learn how to drive. But then, I discovered how much easier things could be for me if I could drive. I still don’t like driving very much, but I am finding it so hard to throw in the towel mostly because I want to prove everyone wrong for not believing in me in the first place. The thing that bothers me the most CP, is there are plenty of other people with CP who have learned how to drive with hand controls and really love it but, in a lot of ways I feel I was set up to fail. Thanks to my horrible driving teachers, I no longer believe in my abilities and am that more nervous about being behind a wheel of a car, especially in the winter. Also, I wonder how much my family really belives in me. What’s that thing that they tell you, CP? If you constantly tell someone they are going to fail, they will fail. It’s like a self-fulfilling prophecy. You hear something so many times that you begin to believe it. I know, truthfully, there is a chance that being able to drive won’t happen for me. And if it wasn’t for me feeling like I have something to prove, I probably would have given up a while ago. But, the thing is, I want to feel like I have been given a fair shot at this. And right now, I don’t believe that I have. Maybe I will give driving another shot and maybe I won’t. As much as I wish this one thing would just come easy for me and make my life a little simpler, I understand my friend’s and family’s concerns. My safety needs to come first and if I can’t drive safely, then I won’t. But at least I will know that I tried. Dear CP: Maybe I will learn to drive someday But it will be okay if I don’t.

  Love,     Me

[notdifferent-justme]

CP Problems:

A. Finding summer shoes that have a back on them and no heel AND.. B. Being able to walk in them without slipping out of them or falling flat on your face.