A smile can lighten up the room. A twinkle in the eye can express happiness, but it doesn’t mean that smiles and twinkles tell a whole narrative. Marquarius, also known as Q, has an amazing story filled with positivity and hardships. He’s a young man with a cheerful demeanor who has mastered the art of communication with his eyes. This is a story about his successes.
Q had a rough beginning in the world. His biological parents loved him but were unable to provide a stable home. That’s when he went into foster care with his twin brother at six months of age. His brother was “neurotypical” while Q was diagnosed with cerebral palsy, cystic fibrosis, and has nerve damage. Q is bound to a wheelchair and is not able to speak using basic language. He and his twin brother bounced between his parents’ residence and the foster home between the ages of six months to eight years old. His foster parent, Sylvia, finally said “no more” because it was too difficult on the boys; they needed a permanent place to call home. Sylvia has fostered many children over the years, and she takes pride in building strong bonds and watching them grow. She loves the kids, shows them compassion, and she is there every step of the way for her children.
It is because of Sylvia that Q had the opportunity to learn how to speak with an eye gaze board. As a young child, she enrolled him in the Lyle A. Torrant Center which helps special needs students develop important skills to live a meaningful life. There are many other skills that Q developed too, but the big development was speaking with the eye gaze board.
There is a program on his device which looks much like a tablet. When opening the program, eyes need to be “locked in” to register and begin. Once the eyes have been scanned, the eyes then become the pointer for the program. To select a word he blinks for communication. This all started as a game when first learning at the center; then it developed into Q learning how to speak. It takes a great deal of eye control. Once Q gets going, he can use the eye gaze machine for 15 minutes all the way up to 2 hours. He will look at various words to “speak” and then when he wants to choose a selection he blinks. He can look at images. He can choose words. He can spell words on the tablet! This is a great method of communication that is not only enjoyable for him but allows others to relate to him. With the support of Sylvia and his brother, Q has officially mastered the eye gaze program.
Q Using the Eye Gaze Communication Board
Q was doing great until another hardship presented itself. Q witnessed the death of his brother just over a year and a half ago. As he processed the grief of the loss of his brother, another tragedy struck. Due to an injury, Sylvia needed extra assistance for the care of Q and his foster sister, and that’s when Q and Stacey were introduced to Beacon Specialized Living.
August 2021 is when the foster siblings entered a Beacon home. Q is 24 and Stacey is 52 years old. Stacey is extremely protective of her brother, and it’s amazing that they were able to be placed together. Throughout his life, he has always managed to have love and protection surrounding him. Even while at his Beacon home, Q and Stacey visit Sylvia and their foster siblings no less than two times a week – so he still has direct contact with Sylvia. While at the Beacon home, Q has a new best friend named Patrick and they even share a room together. Late at night DSPs can hear them laughing and playing. Sometimes they’ll remain quiet and watch tv during the day. But wherever they are in the home, Q and Patrick can almost always be found together. It’s a special bond, they understand one another, and it’s comforting to know they can relate as best buds.
When Marquarius came to Beacon, the DSPs started by slowly working with him. First, they needed to build his trust and gain confidence. Then, they introduced him to some new learning techniques. After about three months, DSPs brought his eye gaze machine back. When he’s happy he’s vocal, bouncing in his wheelchair, playing with toys, and loves to communicate with the eye gaze tablet. Other days he feels grief and will be quiet, stays to himself, and doesn’t like to speak much. He might enjoy the scent of oils and watch lights that display on the ceiling. He’s built a rapport with the DSPs so they know how to support him. The staff at his home are constantly pushing Q to advance his learning and be the best he can be. Today, they encourage him to use his hands more as well as learn how to speak more verbally. He loves music – specifically the organ – and is learning how to play. He loves to watch football, he likes monster trucks, church on Sunday (Sylvia wants him to continue to get out in the community and partake in activities), he rides his specially-suited bike at the home, and DSPs have to be careful because he has a wicked sense of humor. He loves to play pranks on his DSPs for healthy fun and laughs.
The DSPs have built enough trust that Q even lets a few of them test his eye gaze board. Brooke, one of his DSPs, said it is really difficult. To lock her eyes in the program took almost twenty minutes. Then to try and move the eyes as the curser, and blink, is difficult. The whole concept sounds easy, but the eye strain gets difficult if a person is not used to using the machine. Brooke has tried a few times, up to forty minutes on one occasion, and that was more than enough. Then Q takes over and can use it up to two hours no problem. As long as he is making personal strides with hand improvement and various speech techniques, the eye gaze board has now become more of a game or a reward that is used at least three to four times a day.
Marquarius is such a special person with a kind and loving soul. He came to Beacon during the onset of the COVID shutdown. Sylvia is 92 years old, and she would like to have him and his sister come home soon. However, there is no promise that Q and Stacey would be placed together again. So for now, he continues to learn, improve, and stays in close communication with his family, building the bonds with his housemates and caregivers.
When asking the DSP what makes this type of work special, Brooke responded with a smile that could light up a room.
“They are going through more than what we do. We can’t possibly imagine how they feel or the frustrations they experience. They don’t even have the same coping methods as we do on a regular basis.”
This is why DSPs do what they do, and this is why DSPs are exceptional! This is why Sylvia is an amazing foster mom because she brings light and love to peoples’ lives. The special needs of our exceptional Individuals need support just like everyone else. Sometimes it’s harder for them to be understood, but compassion goes a long way, and that’s why it’s so important to help them live their best life each and every day.
