With fall break approaching, my parents wanted to do something. We hadn’t done a big family trip for awhile because of the size of my family. Sitting in the van for hours is hard on my body. Plus dad couldn’t drive all day long anymore. My sister had tickets for Disneyland and was going to join her friends, but her plan fell through. Mom and dad decided to make it a family vacation. I haven’t been to Disneyland for over ten years. A lot has changed since then.  

My first thought was all about getting me out of my chair into the ride then turning around to do the opposite. Multiple times a day. Years ago, I was light weight. Now my parents barely carry me more than five feet. Plus it’s hard on my physical body. There are a few wheelchair accessible rides. I am grateful that they made them accessible! My family likes riding at a fast pace. I can only handle a certain speed. It takes three people to transfer me. With the amount of lifting, my parents and I decided to do just one day instead of three. We made a list of rides to do that day. My big sister knows a lot about disneyland. Where to go and what to do. We wouldn’t have done it without her. 

The first two rides were rough. Barely hold still. We had forgotten that there is no paddling on the seats. I am nothing, but bones. Sitting on any hard surface hurts my body. For the rest of the days, we put my seat cushion and a jacket behind my back when riding. I was able to enjoy the other rides. The one item we should have bought is the hardback seat. Easy to take it around. Through their service, we were able to schedule certain rides. So we didn’t have to check out which ride had the shortest line. They were flexible when we were running late. Plus I was able to take five people with me. Those were so helpful. They let me go to their first aid department for personal business.

I appreciate their efforts of making sure that all people with disabilities are comfortable! Spending a day at Disneyland with my family was one of the highlights of the year!

In the English class of my sophomore year of high school, the teacher had us start a blog. Each week we had an assignment to write on our blog. Here is one of the post I had written:  

“I would like to describe how other people view me and my disability. People who know me well, like my family, see me as a young man who is bright and funny and happens to be in a power wheelchair. They see me as if I am no different than anybody else in the world. There are other people who know me, like my friends, who see me as a guy in a power wheelchair who is smart and happy. At school, most of the kids know me and they see me as popular (of course, not as popular as Michael Jordan or Michael Jackson), but still very popular. There are also some people who don’t know me at all, like strangers on the street, who see me as someone in a power wheelchair who has something wrong with him and is not smart.”

It is always interesting how people treat me. I can tell the right way who have experience of being around with other people with disabilities and who haven’t. Some people treat me like a normal person. Others treat me like I have a mentally disability because I am in a wheelchair and can’t talk. If you are wondering how to talk with certain people who have a disability, ask yourself, “How would you want to be treated?”

Dating is always hard for people with disabilities. Especially for me. How comfortable are people going with me? What to do? How to keep the conversations going? I feel embarrassed when eating around people even if my siblings feed me because I get messy. The last time I went on a date was probably in 2017. I don’t remember what I did. One time I got asked to go out to a dance. That was during my sophomore year of high school. My big sister helped to plan that date and fed me. It was the same girl I took out on my first date. She has known me for years. She was brave enough to hold my hands for the dance. Holding hands is always awkward and stressful. I end up worrying about hurting someone.

Since high school, I have gone out with different women. Mostly to a movie theater. Not the best place to get to know each other. It is always hard to know what to do. That might be why nobody has asked me out. There are not many activities I can do on single dates. Whenever I do go out, time would end up being my enemy. I barely get to know the girl. I appreciate everyone who went out with me! It is difficult to talk and do stuff at the same time. Dating shouldn’t be that hard. It can be so simple like watching a movie or sport at a house. Perhaps sitting and talking at a pond.

I pulled more questions from a website. 

If you could live anywhere, where would it be? My dream is to live on acres of forest where I can roam freely. 

What is your favorite restaurant? Tucanos Brazilian Grill. Their pineapples are to die for. 

If you could choose to do anything for a day, what would it be? I would get a dog and go around in facilities to make people smile. 

Aside from necessities, what one thing could you not go a day without? My communication board. It is my life. 

If you were a super-hero, what powers would you have? Be in tune with people’s feelings.

Getting an income 

Before college, I made most of my money by doing chores and selling my candies to siblings. I used to come home with candies. Unable to feed myself, I always have treats around. Someone has to stop what they are doing and give me bites. That’s why I don’t ask often. My siblings got tired of seeing my candies, so I sold them. Since then, I have become the money man. Selling candies was not enough to get me through college. Mom thought it was time to apply for Supplemental Security Income. While sitting at the office, a guy laughed and wondered why I didn’t apply sooner. The process went so fast. I started receiving income within the first few months. That’s a huge deal. 

Spending money 

Another reason I am called the money man is that I like to save up as much as possible. Used to wait to spend until I found something that I really wanted. With SSI, I am only allows to have two thousand dollars total. The first year was really hard. I had to spend more money. Something I was not used to doing. For a while I had the biggest tv in the house. Everybody was jealous. I kept saving up to get the more expensive stuff. There was a time I had everything I wanted and was struggling to spend more money. What else could I get? I had to really think. 

The concert 

Going to a concert was on my bucket list. Love listening to Coldplay. I missed an opportunity to see them perform in a city nearby me. Then I happened to see that they were going to be in the stadium where the 49ers plays. I wanted to visit the stadium and see the history. Thought it would be a double hitter. So I talked my dad into flying out. With my power chair, we heard nightmares about wheelchairs getting damaged. That didn’t stop me. Besides the airplane tickets, I paid almost everything else. Mom and dad were so stressed. The trip went so smoothly and the Coldplay was a blast. 

I am so grateful for Social Security Income! With the monthly payment, I have been able to pay for my personal supplies. Also get out of the house and go places more often. 

A lot of time people ask non yes and no questions, it takes me a couple minutes to respond. It is hard for people to wait. Especially out in the public. Texting works great, I can respond without anyone waiting. For the interview, I have people send me questions beforehand. So I can answer more quickly. It works out great. I appreciate everybody who took the time to listen to me! Not many people know me well because of the amount of time it takes me to type. Many people would like to learn more about me. I pulled questions from a website. 

If you could only eat one food for the rest of your life, what would it be? Sandwiches. There are many different types of sandwich I can eat. 

Do you have a favorite holiday? Why or why not? I love Christmas because my families come over for our big breakfast and gifts. 

What’s your favorite board game? Splendor. I enjoy playing any game. My parents always tease me about taking me to Vegas. I have the most luck in my family. 

How do you enjoy spending your alone time? I hope my future wife watches sports. Having a game at night is what motivates me to get through my days. I am still a big Utah Jazz fan even though Donovan Mitchell got traded. 

What would be the first thing you’d do if you won the lottery? Invest. So I can help more people to get a voice or transportation. It is difficult to see children and adults not able to speak their minds.

“The most popular, but yet very lonely.” That is how my family describes me. I have a lot of friends, but no best friend. It takes time for people to learn how to play and work with me. Only a handful of people take that time. Growing up throughout school, almost everyone knew me. I was the only one who used a communication board. My social skills were lacking. Plus using my nose to type, I was never fast enough to have a conversation in the hallways. Tried find friends to hang out with during lunch. Being a slow eater, there was not much time. I didn’t have a lot of friends to text. Over the weekends, I was at home while most of them were out. It was really hard. It still is. I can’t sit back and complain about it. Do you want to know the best thing that happened to me? 

I kept going with a positive attitude and had a smile. I believe that was why my classmates selected me as one of the heroes’ assembly and prom kings. I appreciate their thoughtfulness and support! They even gave me a standing ovation at the high school graduation. That was a special moment for me. Even though I felt alone, I knew that people had my back. Recently I reached out to an elementary school friend for his birthday. He reminded me that he still has my back. He lives across the United States. Most of my close friends moved away. Yet they would do anything for me. That’s what friends are for. 

What is the value of friendship? Many of us grew up and lost contact with our friends. Some of us got married and made new ones. Is having friends all about hanging out and socializing with? It is still important. Reaching out and having each others’ back is a true friendship. While I have not many people to text and ask to hang out with, I do have a lot of friends to reach out to. I have their backs. I accepted the fact I will forever be the most popular, but yet very lonely.

One Saturday afternoon, mom and grandma went shopping at Costco. A big store on a busy day. Mom tries to avoid Costco on Saturdays. That day they happened to meet a man who was using his eyes to communicate. Same age. Same body movements. Same type of spastic. Another version of me. Yet this man was controlling his communication board in a crowd with his eyes. Unbelievable. He probably thought my grandma and mom were crazy. Not everybody likes talking to total strangers. That point of time my device was in the process of dying. They exchanged numbers for us to get together. 

The man offered to show me his board and how he managed to control the mouse. My parents and I went to his house. I drove next to him and just watched. The device he has is an Accent1400 from the PRC-Saltillo. Before that night, I had only heard of dynavox and tobii. He has been using it since elementary. Is Accent1400 the answer? Weeks later the PRC Saltillo representative came to my home and let me try the board. I was able to control it from my chest range. With the dynavox’s eyegaze, it had to be about my height in order to read my eyes. I got excited that I didn’t have the new technology taken off when going into our van. After a lot of paperwork and phone calls, I got my new communication board right before Christmas. Then on Christmas morning, my old device crashed. What perfect timing! 

All of sudden, I went from typing with my nose to using my eyes. A big adjustment. It took a lot of time and patience. I got to used to staring at a screen hours after hours. Plus PRC-Saltillo has their own software program. They custom over forty pages of certain words. Even to this day I am still learning where most of the words are. It is like learning another whole language. However, it is faster than just using a keyboard with words predictions which I was using for many years. This device does have words predictions. The downside is that it doesn’t immediately capitalize every first word. Plus it is not as easy to edit my writings as Series 5 software. It is still workable. Most people wonder how does eyegaze work. It track my eyes. When I stare at a button for a certain length of time, the mouse clicks. That’s basically it. When I want to watch a video, I stare at the top of the device to pause. It is a sweet technology, however the eyegaze doesn’t work out in the sun. That is a big disadvantage. Hopefully that will get solved. 

I am grateful that mom and grandma met the young man.

A few months into my first grade, I got called into the principal’s office and my parents happened to be there. It looked like I was in big trouble. It was just the opposite. The principal excitedly announced that the school district was going to give me a communication board called DynaVox. As a little boy, I didn’t totally understand. Also I never realized that technology will change my life forever. Before that day, my parents often played the twenty yes and no questions game. Nobody likes that game, but it was the only way to be able to communicate. My parents did look into getting me a communication board when I was younger, but there were only two buttons: “yes” and “no”. Technology has advanced enough that I can use the keyboard and program my own phrases. Also be able to control the environment. 

The first few years I was using the side of my hands to type. Banging on my dynavox. Hitting big buttons. Typing two to four words per minute. In the third grade I discovered a new way to type. Quicker way. I wasn’t able to keep up on my school work with just pushing big buttons. I needed to go smaller. With the lack of communication, it took a while to convince mom that using my nose is the best way to move forward. Ever since fourth grade, I had been writing papers. I also custom built pages to edit my essays and give presentations. Typing five to eight words per minute. There was no way I would be able to do that with my flying hands. I made a chess page to tell people where to move my pieces. With accessit, I was able to control other windows computers. I built pages to move the mouse and push specific keys. It worked out great. 

In my opinion, Series 5 was the best software. It already has different kinds of phrases and I can easily add my own. Plus it had environmental controls without programming every button of the remote. That was really beneficial. Several years ago, DynaVox and Tobii companies joined together. They were two big competitors. Since then, they have changed all of their products and softwares. Five years ago, I did a month-long trial of their newest device with the eyegaze. It was an epic failure. I couldn’t custom pages which is a big deal. I am a tall man, so the computer had to be right in front of my face. I could not see where I was driving. Also we had to take it off and on when going on car drives. That took away my independence. However, the eyegaze has improved over the years. I kept trying the eye technology multiple times. It wasn’t able to keep up with my head movements. The new one was better, but it didn’t work out for me. Dynavox has the best tech support system. 

I am eternity grateful for all of the communication devices and the capabilities! I owed my life to the school district! 

There are days everyone wishes that they haven’t had to deal with the insurance. Then on other days we are so grateful for the insurance. 

In the middle of June, I happened to lose my right hearing aid at an event. When I was young, my hearing aids went flying. I had been fortunate enough that we were able to find them, not this time. My hearing aid was lost forever. Most insurance companies don’t pay for hearing aids. Last January Utah developed a SelectHealth Advantage plan for people who have Medicaid and Medicare. The new plan includes hearing aids. I got excited! Technology has advanced since I got mine 8 years ago. It was time to get better quality. 

Newer hearing aids have bluetooth. I wanted to be able to connect to my communication board so that I can listen to music and tv series/movies directly into my ears. I get tired of asking somebody to get my headphones and make sure that they are turned on and charged. About every twenty minutes, sometimes less, I had my family adjusting my headphones. It had been a pain. Bluetooth hearing aids will helps me be more independent. When we went in for my hearing test and looked at the new plan we were told they only pay for the lowest quality and won’t allow me to get bluetooth. Basically, they were hearing aids as old as the one I already have and wouldn’t help me in my hearing loss range. I was very disappointed.  However, the audiologist went the extra mile by researching and consulting with other hearing professionals and she was able to get the insurance to approve hearing aids that are only 2 years old with bluetooth. 

Last week I finally got my new hearing aids!! Now I can hear people who are wearing masks. Before I had a hard time understanding my caregivers, even with two hearing aids. And I’ve only had one the last few months. Often my parents come home and I would be rocking out the house. Now they don’t know when I am listening to music. I can also hear a lot more. Before, I couldn’t hear most of the words to songs and audiobooks. With these new hearing aids I am able to understand everything and everybody better. Words become much more meaningful. Hearing little noises and sounds have more impact on me. I could hear somebody coming up behind me or walking through the door. It makes me feel safer. It is a life changing technology. I am so grateful for the SelectHealth Advantage plan! Will it improve over the next few years? I strongly believe so. 

While dealing with insurance is a nightmare, remember in the end it will be so worth the effort.

Have you ever wondered what it is like having severe cerebral palsy? Or what all are involved in limited mobile? There are a lot more than you can imagine. Even if I write twenty blog posts, it still wouldn’t cover everything we deal with on a daily basis. The list could go on and on. That’s another reason why I have written a book. Honestly I didn’t think about blogging until someone mentioned it. My book covers most of the angles of what it is to have cerebral palsy. I am going to share two of the biggest challenges my body deals with on a daily basis. 

When doctors tell parents that their kid has cerebral palsy, there will be lack of coordination involved. How much muscle control their kid will lose? Nobody knows. When I turned three, I wasn’t walking or talking. My parents had no idea whether I would improve or stay the same. Having the lack of coordination is more than being unable to do certain things. Some parts of my body move more often than others. Over time muscles begin to fight against each other. That causes problems with bones leaning further than normal. A lot of people put us in physical therapy when we’re little, so we can develop the right muscles. Is that the real reason? Personally, I think physical therapy helps people like me to avoid hips or spine problems. With years of not having PT, I have developed a subluxed hip. Meaning the bone is partly out of the hip joint socket. It does not hurt yet, but that bone causes my leg muscles to fight even more. At different times they get painful. I used to get multiple shots around my hip and down the leg to loosen up the muscles.. Losing a lot of muscle controls is a big deal. 

Spasticity often comes with cerebral palsy. Flying arms and kicking legs. Often my body makes sudden movements. This is what people are afraid of when being too close to me. I would be too. I never want to hurt anybody, however that does happen. My family knows it is a part of cerebral palsy. Not everybody knows that. They think I am a violent man. If I had super long nails, I would be. The person I hurt the most is myself. Different wounds on my face and hands. Even my parents don’t know how many times I scratch or hit myself. Sometimes I try to make up funny stories. The other night I hurt my eye and told dad that I am getting ready to be Nick Fury for Halloween. I am always hurting myself. “Sometimes I just have to laugh. I can’t complain about hurting myself. There is nothing I can do about my swinging arms. It is a part of living in a body of cerebral palsy. The harder I try to prevent hurting others or even myself, the less control I have over my body. I once told my parents that it is hard to have people really close to me when I start jerking. Then I am afraid that I might hit somebody which makes me jerk even more. … For me, that is one of the most frustrating things about having cerebral palsy. Even though it is so embarrassing, I am glad my body doesn’t go out of control often.”