A voice in the darkness

Fighting for her blind, deaf son

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  • | 11:19 a.m. May 15, 2013
  • Winter Park - Maitland Observer
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Susan Johnson gently sets her 3-year-old son Jake on the living room carpet of her Apopka home. Jake hurriedly walks across the room toward the sunlight flooding through a large picture window at the front of the house. On the window sill, a tall glass of grape juice waits for him, but he doesn’t drink it at first. Instead, the brown-haired boy leans forward and peers through the glass as the warm, bright sunlight illuminates the red liquid that shimmers before his eyes.

After sipping down about half of the juice, the young boy tilts his head to get a closer look, but Johnson picks him back up and starts to carry him off to another room.

For more information on the Fabulous Fashion with a Focus clothing sale, visit lighthousecentralflorida.com

Jake keeps his foggy eyes focused on the window; the light pouring from it is the only thing he can see with his slightly functional left eye.

The year is 1976, and Jake is a modern-day Helen Keller: blind and deaf.

Since those days, Winter Park resident Susan Johnson has helped support the families of children with low vision through Lighthouse Central Florida, a non-profit awareness and mentoring organization that helped her and her son more than 30 years ago.

As the vice chairman of the Lighthouse Central Florida Board of Directors, Johnson is spearheading a group of women called Women with Vision, who create charity events to fund Lighthouse Central Florida’s programs.

The group has a clothing sale planned for May 17 through 19 at Winter Park 330 called Fabulous Fashion with a Focus to raise money for the Early Intervention Program, which focuses on teaching visually impaired children age 5 and younger and their families how to learn language and cope moving forward.

“It’s especially important for a child who’s visually impaired to receive services as early in life as possible, because the majority of learning for human beings comes through our visual senses,” said Lee Nasehi, the CEO and president of Lighthouse Central Florida.

“How do you know what a sky is, or ceilings, or spatial concepts? Those things all have to be taught very specifically in a strategic way for children with vision impairment, and that’s what we do.”

Johnson took advantage of these same services more than three decades ago with her son Jake, who was 2 years old at the time and had lost his sight and hearing at birth due to congenital rubella syndrome.

Desperately needing help to communicate with her son, Johnson reached out to Lighthouse Central Florida, which was known as CITE at the time.

“In a normal development, a child knows 80 percent of what they’re going to learn by the time they’re 3 years old. If you’re ever around a 3 year old, they have lot of command of the language. They know about astronauts and they know about Mars,” Johnson said. “And here I had this little man who wasn’t getting any of that. He didn’t have any language.”

It was then that Johnson met CITE instructor Betty Cook, who ultimately taught Jake and his family how to communicate through sign language and how to cope with the lifestyle of having a blind and deaf family member.

“I remember how hard those years were and how much I depended on that teacher coming to our house,” Johnson said.

“It was my total and complete lifeline.”

As Jake grew up, Johnson continued to sign and interact with him. Jake’s sister Ellie interacted with Jake so much that it became her passion to teach special education students.

“I loved being with him, working with him and helping him,” said Ellie, who worked several years as a special education teacher for teenage autism students. “We were very close. I loved it. It’s one of my passions because of that.”

But in 2009, hardship struck the Johnson family. Jake suffered a detached cornea on his left eye. His vision had been getting progressively worse, and now the little sight that he had was gone.

“His language was right about an inch from his eye in sign language, so when he lost that sight, he lost his language too. It was really traumatic,” Johnson said.

Tragedy slammed the family once again when Jake suddenly developed a deadly upper respiratory virus in 2011.

After spending only a couple weeks in an Orlando hospital, Jake passed away on May 3, 2011 at the age of 35.

Following Jake’s passing, Johnson realized that she needed to give back to Lighthouse Central Florida after everything they had given Jake in the early stages of his life.

“The only way for me to compensate for my broken heart is to make sure that there are systems, programs and finances in place, so that other mothers have the support that they need,” Johnson said.

Nasehi said Johnson’s many years of experience parenting Jake make her that much more valuable to their organization.

“She knows what it’s like, we both do. We know how hard it is to parent these children and there are thousands of families in Central Florida in very similar situations,” Nasehi said. “We’re the only organization that offers the specific services that these families need, and there’s not a way to pay for it.”

“She personally knows the value of having that kind of intervention in your life.”

Johnson continues to try to push the boundaries of how many families can be served at Lighthouse Central Florida by promoting events that fund the crucial programs that help visually impaired children develop.

But still, Johnson’s thoughts always come back to Jake.

“Even in the last months of his life, he still very much would like to go and sit where the sun was pouring in,” Johnson said.

With his ashes now mixed in the roots of an orange tree behind the Johnsons’ Winter Park home, Jake would never miss an opportunity to see the sunshine again.