Robbi is a 58 year old male that was born with Charge Syndrome (Coloboma of the eye, Heart defects, Atresia of the choanae, Retardation of growth and development, and Ear abnormalities and deafness). At the time of his birth, the Syndrome was unknown (It was not named until 1981). At birth his parents were told that his heart, sight, and hearing were affected (He was deaf and partially blind). For most of Robbi’s life, his parents didn’t know if genetics played a role in his condition (Later, scientists have linked a gene to the syndrome). The genetics testing was too expensive ($30,000). And knowing the cause was not going to help the solution. They decided early on that they would do whatever Robbi needed to become a contributing member of society.
When Robbi became school-age, special education was non-existent. His parents were told that they needed to move closer to Austin to receive services from state agencies. Holton, his father, traveled to Austin on several occasions and spoke to several agencies. The agencies that helped the blind said they couldn’t help because of his deafness and the agencies that helped the deaf couldn’t offer assistance because of his blindness. At the age of 6, they eventually enrolled him in the Alabama Institute for the Deaf & Blind in Talledaga. For the next 11 years, he spent 9 months at the school and would return home for the summers.
In 1997 Robbi’s retina detached. He had surgery and it was corrected but then it happened again and he lost complete eye sight. He became extremely angry. His parents didn’t know what to do. He was accepted into the Hellen Keller National Center for Deaf-Blind Youths and Adults in New York. He stayed for 6 months. He learned how to manipulate a Velcro calendar, cook, and use a cane for the blind. They tried to teach him Braile but he hated it. Instead he preferred the letters to be raised. He had a favorite book on airplanes that had the letters raised. His mom bookmarked his favorite pages. He learned how to be independent. His cognitive abilities (calendars, dates, times) amazed the staff. He was asked to stay longer so the staff could observe his thought patterns to enhance their teaching techniques. He spent a total of 13 months at the Center.
When he returned home, his parents helped him get a job at the local Pizza Hut. There he learned how to fold pizza boxes, wipe the tables, fold napkins and silverware, and fill the salt, pepper and cheese containers. Every Sunday, after church they would eat at the Pizza Hut. If for some reason his dad would take a different route, Robbi would get agitated. He could tell the direction the car was headed.
Robbi loves to sit outside on the porch swing but he doesn’t like it if the wind is blowing on him. Robbi loves chocolate. My grandmother, his aunt, always brings chocolates to the reunions. He knows that if she comes to say hi, he is going to get a treat.
He loves flags. He likes to make them wave. He usually has two with him at all times. My earliest memories are of him sitting at a table with his mom waving his flags. At the reunions we always sing hymnals at the end. He can tell when we’re singing. He knows when we pause. One year he was signing away to his mom. I asked what he was saying. She said he wanted to know when it was time to go. He thought we had ended but then the singing began again. Finally, we stopped for prayer and he was signing away again. She said he had been waiting patiently but he was ready to go home.
Robbi loves airplanes, not just any airplane. Every birthday and Christmas, his parents give him the same gifts. He waits eagerly for the last gift. He knows it’s going to be the latest Delta airplane model. His dad said they are not cheap and he usually buys several at a time through the internet. His mom said he became fascinated with Delta at an early age. He would always ride Delta to Alabama. She said he always had the sweetest airline attendants that would assist him. To this day he has not forgotten.
Robbi uses several low-tech devices. One is his Ambutech aluminum 4 section folding cane with a ball. His mother claims the cane is what helped him become independent after the loss of his total eyesight. I was able to watch him maneuver to the restroom using the cane. He walked slowly with his sister by his side. He moved the cane side to side in front of him to make sure that he would not walk into anything or anyone. His sister did assist him since it was an unfamiliar building and crowded with tables and people.
He also uses a general sign language that he learned as a child while attending the Alabama Institute. His mom said later they tried to teach him ASL but he mainly uses his first sign language. He communicates by signing in other people’s palms. A glimpse of his signing was caught in the video that his dad taped of him manipulating his calendar. He is counting the days as he puts the dates up.
That leads to his 3rd low tech device that I would like to mention - his calendar system. His mom said he learned it at the Helen Keller Center. She said he has his Velcro system that he MUST put together the first of each month. He also makes her buy an annual calendar each January. Each month he makes her describe the picture on the calendar. They mark any special days on it and count them out on a daily basis. Robbi has an amazing memory. He is able to recall events on any given day in his history (this is what amazed the staff at the Helen Keller Center).
Although, sign language opened doors for Robbi, he is very limited with his communication. Without the support of his family, I would not be able to communicate with him. Even others that know sign language may have difficulties without the use of a universal language. He was born and taught before the use of current-day technology.
The use of a walking cane helped open doors. Robbi was unable to even get from one place in his house to another without continuous human support. The cane eliminated the 1:1 support that he needed to be mobile.
The Velcro calendar helps Robbi keep all his thoughts in chronological order. His thought systems are so advanced that it even puzzles experts.
Robbi has many low tech assistive technologies in place that help him be as independent as he can be; however, with the newest studies on Charge Syndrome and the latest technologies, I wonder what the future holds for those that are born with Charge.
