These are a selection of stories written by staff members at the Lighthouse of Collier about our Transitional (ages 14-22) population.
Mary is a medically fragile 24-year-old client. She is a significantly physically impaired young lady who spent the better part of last summer in the hospital after suffering a cardiac incident. She is non-verbal and has little to no fine or gross motor control. Mary uses a ChatFusion device to communicate with her nurse caregivers and family. She accesses the device through the use of head mounted switches – one switch steps through the choices while pressing the other switch causes the device to ‘speak’ the selected word or phrase out loud for her.
During my first visit, Mary’s mom informed me that she was not at all tech savvy and really hoped I would be able to update the ChatFusion to offer more functional choices for Mary. (It had not been updated since she was in high school!) I had never worked with this specific brand of augmentative communication unit before, so I searched online for a manual and spent many hours learning how to work the device and make changes to the settings and choice menus. I was genuinely concerned about making ANY changes since I knew this client’s ability to communicate completely relied on this device. I feared if I deleted something by mistake, or broke the device completely, this would leave the client with no means to communicate… No Pressure there LOL!
Meet John & Steven
The holiday season is a time to appreciate all of the gifts we have been given. For the past several months (and through March), Lighthouse clients have been the recipients of front row seats to the Grand Piano Series Concerts. Founders, Milana Strezeva and Raniero Tazzi graciously invited our clients to attend concerts by world-renowned artists after hearing about Lighthouse from Board Member, Sue Bookbinder. Because of their generosity, adults, children, and their families have enjoyed breath-taking performances.
John is a 13-year-old Lighthouse student who plays the saxophone, violin, and piano. He plans on attending every Grand Piano concert and has made a point of meeting each pianist after the performance to ask questions and take pictures. The concerts provide John with an opportunity to see what is possible to achieve musically and the steps needed to succeed. He asked one artist how long it took him to play so well, to which he responded, “all my life.”
Lighthouse of Collier recently selected the recipients for our scholarship fund. One of the recipients is a 19-year-old boy living with retinopathy of prematurity. For this story, we will refer to him as Derek.
Derek has been a client since he was 13 years old. He is a great example of our mission. Throughout his time with Lighthouse, he has worked on job readiness skills, independent living skills, assistive technology, and many other areas of instruction. He regularly worked as a camp counselor for the children’s summer camp and completed work-based learning experiences in the community.
Whether, working as a TVI in the schools or as a CVRT in an agency (such as the Lighthouse), vision specialists have the unique privilege of following their students’/clients’ growth and successes over a long period of time, sometimes throughout their entire educational career! This is a story about one such young man (“Wyatt”) who has been a Lighthouse client (off and on) since he was in 6th grade.
Lighthouse of Collier started a music braille program and invited James to participate. James recently experienced the aha! moment of reading basic braille notes and playing them on a piano. He begins band camp next week and has already obtained copies of his print music to begin the process of translation to braille.
Meet Joey and Anna
Music has powerful effects on human beings, including lifting moods, reducing anxiety, improving memory and connecting with others. Children who are blind or visually impaired currently face barriers in accessing music as they participate in music activities such as choir or band. Joey, a middle school student who is learning piano, saxophone and clarinet, accesses print music primarily by listening to others play and memorizing what he has heard. Anna, a college bound senior heading to Nashville, needs skills to access the curriculum as a music major. New tools and strategies are needed to teach these students how to access music independently as well as those students who may not have explored music due to inaccessibility.
Jeremy is an 18-year-old student with cortical vision impairment and cerebral palsy. Communication is a challenge for Jeremy, as he is nonverbal and has difficulty controlling his movements. As a result, it is important to communicate with Jeremy’s family to formulate goals that are meaningful to him. One particular goal was to increase social interaction with family, friends and teachers using a voice generating switch.
Lighthouse of Collier, Florida Division of Blind Services (DBS) and Jeremy’s parents all contributed to purchasing a switch, heavy-duty mounting arm and mounting plate. Jeremy’s father and brother pitched in to record approximately ten messages, ranging from hilarious movie quotes to favorite foods and music preferences.
For the past few years, Owen and his family and friends have collected donations during the holidays on behalf of Lighthouse of Collier. Owen is 12 years old and has Stargardt’s Disease, a genetic form of juvenile macular degeneration. People with Stargardt’s have central vision loss, blurred vision, and have difficulty recognizing faces, but their peripheral (side vision) is preserved.
Owen lives in Victoria Park where we all know that every home decorates for the holidays and it is a frequent stop for visitors to drive by and see the bright lights and decorations. Owen always sets up shop on the busiest corner with his friends and family with a large Lighthouse of Collier sign. Their purpose is to collect donations for Lighthouse of Collier.
Vicki is an 18-year-old woman just beginning her college career. She is smart and self-reliant. Despite her visual impairment, she earned a full scholarship as an accomplished student and athlete in discus and javelin.
Vicki understands that being self-reliant as a person with a visual impairment means being able to advocate for herself. Vicki knew she needed orientation and mobility training to maintain her independence while participating in outdoor activities and traveling in her new college environment. The Lighthouse of Collier was recommended to her and her family.
After an initial assessment, Vicki and her assigned instructor began an intense training program in orientation and mobility. Even though she become ill with COVID-19 and had many doctors’ appointments before the start of school, she remained focused on the skills she would need to manage her indoor and outdoor travel needs efficiently and effectively. She practiced in earnest between lessons and, as a result, progressed quickly. Along with her cane, she possesses the orientation skills needed to thrive in a new environment. Her future goals include learning how to navigate public transportation and city traveling, so that as she advances through school and life she will continue being able to advocate for her own needs.
Jeremy is a 17-year-old boy with cortical vision impairment. Although his eyes are healthy, damage to the brain’s pathway affects his ability to understand and interpret what he sees. Jeremy is further challenged with cerebral palsy, affecting his ability to control his muscles. Jeremy receives services from the Lighthouse in his home with interventions focused on increasing his responses to visual, tactile, and auditory stimulation. He also attends monthly group events through the Lighthouse; his favorite activity is touching the alligator and bear skins at the Naples Zoo!
Purchase Seeing Beyond Blindness
If you would like to own one of these cocktail table books, please donate a suggested selling price of $35.00 to Lighthouse of Collier and we will send you one straight away.
Lighthouse of Collier dedicated the book to Art Bookbinder, a man who could see beyond blindness. He was a great friend and leader. May he rest in peace. August 1942 – April 2020.