A BROTHER'S PERSPECTIVE

BY DANIEL GEORGE

Hi, my name is Daniel George and I am 15 years old. I am advocating as a sibling for family members to spend time with children with disabilities when the opportunity arrives. My brother, Jacob, sustained a severe traumatic brain injury ten years ago. As defined by the Centers for Disease Control and Prevention (CDC), Traumatic Brain Injury is a disruption in the normal function of the brain that can be caused by a bump, blow, or jolt to the head. Jacob was an average seven-year-old when the accident happened on a Halloween hayride. Because of the injury, Jacob is quadriplegic, cannot see, cannot speak, cannot eat, and he requires round-the-clock care. But that does not mean he cannot communicate. We know that Jacob loves it when our family spends time with him because he smiles. We assume he can hear us and comprehend the environment because he reacts to stimuli by laughing.

Even though there is so much uncertainty in an injury sustained over ten years ago, I know Jacob enjoys our company. So I watch T.V. with him, take naps with him, tell him jokes, and try to help my parents take care of him as much as I can. I was so young when it happened that the life we live right now is the norm. I do not really remember much about Jacob before the accident because I was only four. What I heard from my family is that he loved spending time with me when I was younger and he still does to this day.

I still find it hard to zoom out and understand the real depth of the impact of what happened to Jacob on me and my family. I want Jacob and many other people with disabilities to communicate because that is the best way to get to know and hang out with my brother. Laughter is great but, hopefully, that is only the tip of the iceberg for Jacob's ability to communicate with us. We tried to do many things to combat Jacob's locked-in syndrome, but not all of them have been successful. We tried to have him communicate with his eyebrows. I put aside 30 minutes a day to try to teach him to raise his eyebrows as "yes" and leave them where they are as "no". The results turned out to be inconsistent and we decided his tremor might make answering very random. Now we are trying to use a Brain-Computer Interface (BCI) to communicate with him.

DRIVEWAY MOMENTS: (left) Jacob's oldest brother, Davis, Jacob and Daniel clearing snow from their home's driveway in Basking Ridge NJ; (right) Jacob and Daniel playing basketball. "Family members with disabilities would love to spend time with loved ones to establish a connection. Even if it is just 30 minutes, the time spent will mean worlds to your family member."

Researchers at the National Center for Adaptive Neurotechnologies, showed me how to set up the BCI on Jacob. If we can use the BCI regularly, hopefully, I can work with him on it a little bit a day and show the data we collect to a professional. Getting the opportunity to communicate will change Jacob's life dramatically. For example, he would be able to tell us when he is hungry or when he is uncomfortable.

I believe that research on BCI will have the potential to improve the quality of life for people with many disabilities that affect their communication. It might be some people's last hope and giving back that bit of life they lost would be wonderful.

As a sibling, my goal is to get to know Jacob more, make his life easier, and help the millions of people that are in the same situation as my family. Even with very limited means of communication, Jacob has a big personality and he is not afraid to show it. I have a feeling that that is the same way with many other kids with disabilities around the world. We don't hide our lifestyle even though it is so different from the norm.

he norm. Completely immersing a sibling with a  disability in our daily activities and lifestyle is difficult and unproductive for both parties. But family members with disabilities would love to spend time with loved ones to establish a connection. Even if it is just 30 minutes, the time spent will  disability in our daily activities and lifestyle is difficult and unproductive for both parties. But family members with disabilities would love to spend time with loved ones to establish a connection. Even if it is just 30 minutes, the time spent will mean worlds to your family member. •

 ABOUT THE AUTHOR: Daniel George is a freshman at Ridge High School, Basking Ridge, New Jersey and is Jacob George's brother. Daniel has written other publications to tell Jacob's story. Daniel is keen on assessing the current challenges with his and his family's situation and tries to identify solutions for aforementioned problems. 

References:  "Traumatic Brain Injury." Centers for Disease Control and Prevention, Centers for Disease Control and Prevention, 4 Mar. 2019, cdc.gov/traumaticbraininjury/index.html.