Cerebral palsy is a neurological disorder that affects muscle coordination and movement. It is caused by brain damage that occurs during or before birth, and can also develop during the first few years of a child’s life. In my case, my heart stopped beating before I was born, which caused a lack of oxygen to my brain and resulted in my severe cerebral palsy.

The symptoms and signs of cerebral palsy can vary from person to person, depending on the severity of the condition. Common symptoms include poor muscle coordination, difficulty with balance and movement, muscle stiffness, weak muscles, and tremors or involuntary movements. These symptoms can affect various parts of the body, including the arms, legs, and torso, and can make it difficult to perform everyday tasks such as walking, sitting, and standing. Imagine someone else controlling both of your arms and legs.

Other symptoms of cerebral palsy may include difficulty with speech and communication, cognitive impairments, and seizures. These symptoms can have a significant impact on a person’s daily life, and can make it challenging to interact with others and participate in activities.

Challenge: Lay or sit down and let someone control your arms by using stings.

Life hacks and assistive technology can be a game-changer for people with cerebral palsy who use power wheelchairs like me. Having the right tools and strategies can make everyday life easier and more manageable. Here are some life hacks and assistive technology tips that have helped me:

Customized Wheelchair Controls: Customized controls for my power wheelchair have been a huge help for me. I have difficulty using my hands, so I use a big handle to control my chair. I also have a button on the side that allows me to turn off and on my chair. These customizations make it easier for me to control my chair and navigate the world around me.

Communication Devices: Communication devices like my Accent 1400 have been a lifesaver. I use my eyes to control the device and communicate with others. It is frustrating not being able to speak or communicate easily, but having a communication device makes it much easier for me to express myself and participate in conversations.

Voice-Activated Home Devices: Voice-activated home devices like Amazon Echo or Google Home can be great for people with limited mobility like me. I could control the lights, TV, and other devices in my home with just my voice, which makes me feel more independent.

In conclusion, there are many life hacks and assistive technology tools available that can make life easier for people with cerebral palsy who use power wheelchairs. These tools can improve independence, communication, and overall quality of life. 

Challenge: Have someone to push you around in an office chair.

 Here are just a few of the most common challenges that people with cerebral palsy face in their daily lives:

Mobility: Many people with cerebral palsy have difficulty walking, and may require mobility aids such as walkers, crutches, or wheelchairs to get around. Even with these aids, getting around can be challenging, especially in places with stairs or uneven surfaces.

Communication: For those of us who can’t speak, communicating with others can be a constant struggle. I personally use eyegaze technology on an Accent1400 to communicate, which can be a slow and frustrating process at times.

Daily tasks: Simple tasks that most people take for granted, such as getting dressed or feeding oneself, can be much more difficult for someone with cerebral palsy. Assistance from family members, caregivers, or specialized equipment may be necessary.

These are just a few examples of the challenges that people with cerebral palsy face in their daily lives. Despite these challenges, we are a resilient and determined community, and we are constantly finding ways to adapt and overcome.

Challenge: Try communicating  only with your phone for a half hour or letting someone put on your coat.

As a blogger, I have always struggled with writer’s block and coming up with new ideas for my posts. However, all that changed when my older sister taught me to use ChatGPT than just proofread my writing. ChatGPT is a language model powered by OpenAI that uses machine learning algorithms to generate human-like text. My sister showed me how to use ChatGPT, and I have been amazed at how much it has helped me speed up my writing process. In this post, I want to give a shoutout to my older sister and talk about how she showed me the power of ChatGPT.

My long-time friend was the first one to introduce me to ChatGPT, and I couldn’t be more grateful. He knew I needed help with grammar. My sister took the extra step. She saw that I was struggling with my writing and knew that I needed a tool that could help me generate new ideas and content quickly. She explained to me how to use ChatGPT and how it could help me overcome writer’s block. Her support and encouragement have been instrumental in my success as a blogger.

I want to thank my older sister for showing me the power of ChatGPT. Thanks to her and my friend, I have been able to generate new ideas for my blog posts quickly and efficiently. ChatGPT has revolutionized the way I write, and I am excited to see what other possibilities it holds. I hope that this post has inspired others to try out ChatGPT and see for themselves just how powerful it can be.

Welcome to the year 2023! It’s hard to believe the first month has already come to an end. Time flies like the train in the movie Unstoppable, always going 60 miles per hour, never slowing down. This year, I’m going to try something different. Some people want to know what I’ve been doing lately, and a part of me I want to talk about it. My life is quite different from most people’s. The reason I don’t share much is that I don’t go out much; I mostly stay home and find small things to keep myself busy. At night, I watch basketball or other sports. My life may not be exciting, but instead of focusing on what I wish I were doing, I spend most of my day gaining knowledge and reaching out to others.

The best thing I did in January was when my mom took me to renew my state ID. At the same time, my brother got his driving license! Afterwards, we celebrated by going to Golden Corral, one of my favorite restaurants. Now I have another driver to take me places and feed me.

One thing I learned was that the inside of our ears is so sensitive to touch because there is no extra layer of skin. A few nights after Christmas, I accidentally scratched the inside of my ear and didn’t think much of it. But then, blood began flowing out. I shouted and my parents put pressure on the spot. Twenty minutes later, the bleeding finally stopped. It was really strange. Three weeks later, my mom drove me to see an ear doctor because I kept having sharp pains in my ear drum. The doctor pulled out a layer of dry blood. Since then, I haven’t had any more pain.

Sports are a big part of my life. I watch a lot of professional basketball and occasionally football. Sometimes soccer too. Sports are enjoyable to watch once people understand the rules. I am the only one of my family that gets involved in the games. Often I get so caught up that I don’t notice my body language. Arms swinging around. Legs trying to break out of the straps. My body gets a workout every time. It is difficult to sit still when exciting stuff is happening. No one likes feeding me during the games. My mouth becomes a moving target. I learned to eat quickly between all of the breaks. 

While watching, I keep forgetting to chew my food. Then I begin coughing and choking. It is not just during the games. Over the last couple months, my habits got worse and worse. There were times when I got my parents really worried. They rarely get concerned. I was gagging on my pills more than usual. If I scare my parents, then it is a serious problem. It came to the point that we needed to do something. I wondered about trying a new medicine that relaxes my muscles. Mom felt that wasn’t the right direction to go. She did some looking. Finally, there is a simple solution to the problem. 

In the sports field, positioning is very important. Players can’t shoot the basketball well while looking at the ceiling. Quarterbacks would have a hard time focusing if their head is leaning sideways. Same principles apply to eating properly. Before mom found the solution, my chin was up most of the time. Almost everything that goes into my mouth slides straight down to the back of my throat. I have no choice besides coughing and choking. Once I started putting my chin down, I had more control. The back of my throat isn’t wide open like before. Think of it like a straw. People like to put tiny wrappers in the straw and blow it to shoot at others. When the straw is straight, people can aim. What if it gets bent? There wouldn’t be enough air to go through. I also learned by having my head down, the esophagus is more open. It is better to cough when facing forward. Like in sports, positioning is the key.

Here is the article that has really good information.

The last couple years before Thanksgiving, my mom asked us to send her links of stuff we want for Christmas. So she doesn’t have to rush to order everything weeks before the last big holiday. I would probably do the same thing with my future family. The week of Christmas is absolutely insane. Even though delivery companies hire more people and truck drivers work longer hours, packages still get delayed. If Santa Claus was real, he wouldn’t drop off every present on time. Plus with Black Friday and Cyber Monday, it is cheaper to buy stuff. 

As I keep growing older, it seems to be getting harder to know what I want. That’s usually the case with most people. Having a physical disability limits the things I can do and go. Whenever I receive something that is touchable, it ends up being a waste of money. I can’t hold anything with my hands. Every time I open a present, someone usually helps me to start unwrapping. To me, that is hard not being able to open my own presents. I don’t dwell on it. My family enjoys seeing me happy when opening gifts. I keep that in mind.

People around my age mostly ask for clothes or gift cards. I don’t like asking for clothes because they get dirty easily. With people picking out my clothes, I don’t wear my new ones often. I could go through my clothes and have someone to set them aside for the next day. It is the extra effort for someone who isn’t picky about what to wear. I love gift cards, but most of them ended up sitting in my wallet. Unable to drive and feed myself, I don’t go out much. A thought appeared to me last year. If people send gift cards through my email, I would be more likely to order food and have it deliver to me. I am the type of person who waits to spend until I see something that fills my wants. That explains why presents are hard for me. 

Another reason for difficulty to ask is because most of the stuff I want is out of budget. Whether it is a piece of technology, going to an event, or saving up for a trip. I would love to get out more and experience life. With a big family, my Christmas budget is not much. If I wanted to attend a basketball game, that would be my one present. Do you know what I would love to do? Take breaks from my daily tasks and go on trips more often. If I save all of my birthday and Christmas budget for three years, my parents would be able to afford to take me to Los Angeles. That would include pitching in a lot of my money. What is the purpose of Christmas without any gift? It would take away the joy from my parents of finding and surprising me Christmas morning. Some years they did a good job of fulfilling my needs. Seeing me smile on that morning is worth the struggle of getting the right presents.

A lot of my friends had a baby within the last year. Seeing tiny fingers and toes. I am excited for all of them. It is just a special moment in their lives. Most of my friends already have a child or more. Looking at the pictures on their facebook page, I’m always amazed by how fast their kids grew up. Time never stops speeding. Seven years ago, I was hanging out with different groups of friends. Now they all are married and having children. Does it bother me to watch my friends get married and raise children? Yes and no.

A friend of mine asked me, “Have you thought about your future children?” Not much. Whenever I think about starting a family or what type of lifestyle, I get discouraged and depressed. Every year seems to become harder. My muscles make everything more difficult. It is harder for people to dress me. It is harder to eat my food. Who would want to put all of the extra burden on their spouse? That question had come across my mind. That is one of the reasons I haven’t been on a date. There are different programs where people like me can get extra help. Another question also popped up, what is the purpose of marriage if I can’t bring happiness and joy to my future wife? Also to my future children?

Another friend gets really discouraged by the thought he’ll ever find a person who wants to date him. Honestly I feel the same way. I am not the most handsome man in the world. I don’t have a lot of knowledge to entertain people. Most women don’t talk to me like any other men. Every lady has her own view of me. While it is true that I am unique and different, however my characteristics don’t meet a lot of women’s expectations. How many people ask someone with a disability out on a date? Probably not many.

We as disability human beings are always proving who we are and what we can do. Our dream of finding the right person and getting married is not hopeless. It is more challenging. If we want it more than anything, we’ll find someone who looks past our disabilities and loves us. There are thousands of people who married a person with a disability. I can imagine a huge majority of them say, “Getting married and having children was worth all of the extra burden.” A lot of my friends would tell me the same thing.

If there is no exam in college, would you still be able to learn as much to live your career? Our college life would be so much easier and fun. Less time for studying and more parties. When it comes to starting our career, we wouldn’t be successful in the long run. That is life. I often think of trials as a test. There are stepping stones in our life that help us to learn and grow. We all have a history. How often do we look back at our past and see how far we have become?

Living in the body of severe cerebral palsy is extremely difficult. Often painful. Having little control over my muscles. Each and every day I wish to be a normal human being. No more waiting to get out of my bed. No more being hopeless sitting at the table. No more coughing and choking everyday. I would be in less pain and less lonely. My family and friends would want to see me live on my own. Be free to do whatever I want. Go anywhere I want. What is the purpose of being trapped in a broken body? What am I supposed to learn?

Before birth, my heart stopped for a reason. I was meant to have cerebral palsy for the rest of my life. I had accepted that fact. Having this disability is what helped me to decide who I want to be and how to live my life. It allows me to think back on my days more often. I have a lot of time to just reflect. What went smoothly? What could have gone worse? How to do things differently? How to be more thankful? I expressed my gratitude for all of the doctors and nurses who were able to get me out of my mom’s womb! I am so grateful that there was a C-Section room and everything was already set up! Luckily my heart didn’t stop minutes or hours earlier. I am thankful that I have cerebral palsy, so I can learn to appreciate the little things in life.

Have you ever wondered about my diet when looking at me? Do you eat or are you on a feeding tube? What can you have? Often people think I don’t eat much because of how skinny I am. Even when I was a baby, doctors talked my parents into putting me on a feeding tube for that same reason. Mom didn’t think that was right. I am grateful that she chose not to listen. Could you imagine watching others eat while being on a liquid diet? I couldn’t sit at the same table. That has to be really difficult. 

When people see me eat, their minds are blown away. Have you heard the phase “second breakfast” from The Lord of the Ring? At night, I always have a second dinner. Growing up, I used to be pretty hungry before going to bed. By morning, my stomach was growling. Finally I talked with my parents about it. They didn’t know. Often my family would be already done before I eat half of dinner. That is why I rarely ask for more food. I don’t want to keep my parents waiting, which is an interesting concept. I have patience to wait between bites, but not eating at a table for over 30 minutes. Especially when people move on to other things. There is always a fine line between keeping me healthy and having people wait for me to get full. If my arms had better coordination, I would be eating more. I probably would be healthier. 

It wasn’t until a few years ago that I found myself eating faster. My parents began cutting food up then put it on the side of my mouth. Tongue is another muscle I have a hard time controlling. Almost every bite I swallow whole. Would you have patience to slide each and every bite over to the sides of your mouth? I rarely chew up my food well, even to this day. That is why I always cough and choke. Trying to move my tongue to certain directions is a workout. Putting food in the sides of my mouth really makes a difference. Besides having my food cut up, I eat like a normal person.