At 10, Marja Cassidy has already had adventures that most children would envy. In recent years, her itinerary has included visiting Incan ruins in Peru, snorkeling in the Gulf of Mexico, camping and canoeing in the Boundary Waters Canoe Area, visiting historic sites in several states, and exploring the mountains in Montana. She also completed her first triathalon.
“Not bad for a little girl who can’t see or hear very well,” notes her mother, Miaja Cassidy.
This was not the future that doctors predicted when Marja was born 17 weeks premature. Weighing just one pound, seven ounces at birth, Marja fit easily in the palm of her mother’s hand. As Marja struggled to survive, the doctors presented her parents with a “parade of horribles,” a daunting list of potential medical issues that their newborn daughter could face, including combined hearing and vision loss.
Miaja Cassidy, Marja’s mother, recalled, “We knew before Marja left the neonatal intensive care unit three months later that she would have vision problems. Yet, every time we saw the eye doctor over the next three years, and her vision became worse, it felt like a truck ramming into my stomach. I hated taking her to the eye doctor, but going to the audiologist was no big deal.”
That all changed when Marja was almost three. A sedated ABR (hearing test) confirmed that she had moderate hearing loss.
“Suddenly, I was the mother of a modern-day Helen Keller. I could hardly take in the information. My insides felt like lead. All I could fit in my head was that my daughter was just diagnosed ‘deafblind,’” said Miaja. “Fortunately, the darkest days are behind us.”
Today, Marja is a happy, articulate child who has just finished fourth grade at her neighborhood school.
Because Marja didn’t lose her hearing until after learning to speak, she is able to express herself verbally, which makes it easier for her to communicate with others. Eyeglasses help Marja to make the most of her remaining vision while hearing aids and an FM loop amplifier help her to access her remaining hearing.
“It’s not that we don’t ever think about what her life could have been like if she had perfect vision and perfect hearing. But this is her life. We watch in continual amazement of how she functions, gets around and does completely normal everyday kid things,” Miaja said.
That’s not to say it’s been easy. Miaja credits much of Marja’s progress to her daughter’s independent spirit and can-do attitude, as well as the skills and creativity of the Interveners and educators that support her in the classroom and the community.
Since learning that her daughter has combined hearing and vision loss, the Cassidy family has found themselves “breaking new ground,” especially with the local school system.
Because combined hearing and vision loss is a low incidence disability, “there’s no tried and true educational formula. We soon found out that it takes a lot of creativity and trial and error to come up with the right accommodations and supports. Flexibility is essential,” said Miaja. “Marja’s IEP team has been very creative and they’ve worked hard to find new ways to help her learn.”
Fortunately, the family was urged to connect with the Minnesota DeafBlind Project staff soon after learning that Marja was deafblind. Project staff members were able to put the family in touch with resources they didn’t know existed. They also worked directly with Marja’s school to train teachers and staff to understand Marja’s challenges. The Minnesota DeafBlind Project also provides opportunities for the Cassidys to meet other parents dealing with similar challenges.
“The annual Mothers Retreat is particularly powerful, especially during the early years when everything seems so overwhelming and there’s so much coming at you at once that it feels like you’re trying to drink from a fire hose,” said Miaja.
The Minnesota DeafBlind Project also helped the family to understand the important role that Interveners play in assisting children who are deafblind to learn and become more independent. An educational Intervener provided by the school works with Marja in the classroom, while a community Intervener provided by DeafBlind Services Minnesota is helping her to develop the skills she needs to explore her community safely.
Marja has benefitted from Intervener support since she was in first grade. Her Intervener works one-on-one with her in the classroom to make sure Marja understands the concepts. At times, this includes reformatting information to remove visual clutter so that Marja is able to concentrate on key information.
“She’s very fortunate to have had access to exceptional Interveners,” said Miaja, noting that the best educational Interveners know when to let learning happen naturally and when to modify a lesson or the way a skill is taught so it is easier for Marja to grasp.
Marja also uses assistive technology at school and at home to help her access information more efficiently. For example, the school provides a dedicated computer for Marja that is connected directly to the classroom smart board. An iPad provided by the Minnesota DeafBlind Project allows her to work on math skills more effectively.
Miaja acknowledges that it can be difficult to step back and let Marja take risks and become more independent. However, she knows from experience that that is exactly what they need to do as the parents of a child who has combined hearing and vision loss. When Miaja finds herself trying to protect Marja from taking risks, she recalls the time when Marja was four years old and insisted on riding a bike without training wheels.
After trying to explain the risks and dangers to the independent preschooler, Miaja eventually gave in. Marja hopped on the bike and began to ride, a bit wobbly at first but moving forward.
“I realized then that there are times when I need to let go and get out of the way, even if it means she might fall or fail. We’re here to help facilitate her growth, not to hold her back.”