“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.