Future Reflections Summer 2012
by Tina Tan Egle
From the Editor: Born in Burma, Tina Tan Egle finds the energy to combine active careers as a dentist and college track coach. She is also tireless in her quest for resources to help her son, Justin, who is blind and has additional disabilities.
I am the mother of a sixteen-year-old boy, Justin. He is totally blind, nonverbal, and autistic. He was born at twenty-three weeks gestation--just four months and two days. He weighed less than one pound. Due to his extreme prematurity and low birth weight, plus his 100 percent dependence on oxygen, the doctors and others specialists on the neonatal intensive care unit believed he had no chance of survival.
Within the first week, Justin became lethargic and ill. After three days, blood tests revealed that he had contracted a deadly E. coli infection through cross contamination by nurses caring for other babies in the unit. With his kidneys and lungs shutting down, tiny Justin blew up like a Goodyear blimp. The NICU physicians were ready to discontinue his life support, but I would not sign the permission forms. Within five days, his kidneys started to function again and he was out of danger.
After five months in the hospital, Justin was able to suck from a bottle, and he had gained three pounds. We took him home with an oxygen tank and a heart monitor. By that time I was convinced I had a very determined child who wanted to live. I was sure there was a reason he was still alive after everything he had endured.
Justin had numerous surgeries in an attempt to prevent his retinas from detaching. I took him to an ophthalmologist in Detroit who was recommended highly. Despite everything, however, Justin was left totally blind.
As he reached the age of two, Justin began to say a few words. He entered a birth to three program through our neighborhood public school. All of the therapists commented that Justin was an intelligent, delightful, and happy child. He learned quickly, especially when sound was involved. He loved to hear animal sounds, and he loved to use the IntelliTool Talking Program. The program allowed him to play many sound-based games.
When Justin was three and a half, we wanted to enroll him in pre-kindergarten. The school system required an MMR (measles, mumps, and rubella) immunization. My husband, Mike, and I were concerned about having him get this shot. He already had been through so much, and we were worried about a possible reaction. Reluctantly we decided to go ahead.
As soon as we got home from the doctor that day, Justin developed a high fever and went into violent seizures. He was turning blue as we rushed him to the ER. That was one of the worst days our family has ever lived through. From that day on, Justin has not been able to speak. He can only utter "Hi," "Bye," and "Papa." He began to rock constantly, and he started to have nighttime seizures. I took him to a series of pediatric neurologists, who confirmed my suspicions. They diagnosed Justin with autism and placed him on medications to control his seizures.
[Note: Scientific research has not found any link between immunizations and autism, despite anecdotal reports. However, the Centers for Disease Control (CDC) reports a small risk of febrile seizures (seizures triggered by fever) after immunizations. The CDC states that "genetic predisposition and other factors such as cerebral palsy, delayed development, or other neurological abnormalities increase a child's risk for developing epilepsy after a febrile seizure" <http://www.cdc.gov/vaccinesafety/Vaccines/MMRV/qa_FebrileSeizures.html>.]
Mike and I were devastated! Justin's future looked bleak. What could we do to help him? We felt we had nowhere to turn.
We took Justin to one speech therapist after another, driving all over the state. Nothing they tried ever helped him communicate. The speech therapists gave up on him, but I could not. There had to be a way for Justin to express himself. I was certain he understood what was going on around him; he just couldn't tell us what he was thinking.
Over the years we have moved three times in our efforts to get Justin the education he deserves. He has been in school systems where he was the only blind student, and he was always misunderstood by the educators. Instead of giving him the technology evaluations necessary for a blind, nonverbal child with autism, all three school districts gave the standard tests used for sighted students with special needs. Of course, Justin failed every test. He scored extremely low on IQ tests. The psychologists added another diagnosis to the list: severe mental retardation. They claimed that Justin was not teachable at any academic level.
I tried to have Justin's teachers of the visually impaired (TVIs) teach him Braille, but year after year they refused. That diagnosis of mental retardation followed him like a black mark through his life in school. He spent his days listening to music and playing Wii games at school. I tried to teach him Braille at home, but after a while he was reluctant to learn with me. He didn't think Braille was fun. He wanted to have fun at home as he did at school.
For a time Justin's teachers experimented with an electronic device that provided speech output. Due to his autism, Justin would press the keys repetitively. The teachers were afraid he would break the equipment. They never let us have it for home use, and they stopped using it at school.
The teachers said that Justin got too excited when they let him use the computer. They didn't believe he would be able to use it to communicate. I started teaching Justin to use the computer keyboard at home. I downloaded free demo versions of the IntelliTool Talking Program and the screen reader called JAWS. Justin loved computer time. I gave him computer time as a reward after we worked on cane use, self-feeding, toileting, climbing stairs using alternate feet, and other skills. Justin is very pleased with himself when he accomplishes a task.
Justin was approaching his thirteenth birthday, and he was in seventh grade. He still was not receiving Braille instruction, and he had no communication device. I knew he needed a device that would help bridge the gap between his receptive and expressive language.
In the spring of 2009 I learned about the NFB of Illinois (NFBI), and I signed up as a new member. I will never forget the day NFBI President Patti Chang called to invite me to the annual parents' conference. Justin and I felt totally embraced by the NFBI members and parents. I felt we had come home.
I learned a great deal at that conference. For the first time I heard about the School Association for Special Education Vision Program (SASED), a program for blind/visually impaired students in the Chicago suburbs. I spoke to many parents whose children were enrolled in the SASED program, and they all were very pleased. I wasted no time. On Monday morning I called to make an appointment to observe the class at the middle school. I was amazed by what I saw. This was the school system Justin had needed since he was three years old!
With the help of Patti Chang and NFBI Vice President Debbie Kent Stein, my husband and I convinced our school district to let Justin go for a trial visit to the middle school in the SASED program. That visit was the turning point for Justin. He totally fit into the program. The vision coordinator and the TVIs recognized that the key to learning for Justin was communication. Once he could relay his thoughts, his true learning potential would be unlocked.
Justin started at his new school in November 2009. On his first day he came home with a communication device called the Fusion. The Fusion is a portable device designed for people who cannot speak, and it is fully accessible for someone who is blind. It speaks aloud the words Justin types.
One winter day Justin removed the Fusion from his backpack and typed out, "Mama, I am so cold, can you please give me a sweater?" It was the first time my child had ever called me Mama! I had waited for thirteen years! I was in tears.
That was just the beginning. The TVIs and aides all work very hard, and Justin does, too. He is eager to learn as much and as fast as he can. Justin can type faster now, since he has the same equipment at school and at home. His new teachers agree with me that the necessary tools must be at home as well as at school. Our children need to use their technology in all environments. Justin takes his Fusion to the park, to restaurants, and to family gatherings. He types to communicate with everyone he meets.
The teachers at Justin's school are experienced in working with blind students who have additional disabilities, including those who are nonverbal. Justin is flourishing, and we can see in his face that he is happy to be understood. Now he emails simple greetings to his friends and family. He sends me three or four short emails per week from his technology class, and I look forward to reading what he has to say about his day at school. His dad got jealous because Justin only wrote to me. One morning, Mike asked Justin to send him email, too, and Justin complied. Now he emails to both of us routinely.
Justin can use the iPad and go on the Internet. He has learned to open up YouTube files so he can listen to music and movies. He types faster and more accurately. He deletes his incorrect spellings and retypes correctly. He does not use the spell checker yet. I want Justin to build his confidence and accuracy by correcting himself.
The school gave Justin JAWS and the new Lite Touch Braille Writer. He loves using both of them, and he works on them constantly. He actually likes doing homework!
We want Justin to be involved in activities outside school, just like any other teen. I found the perfect piano and swim instructor for him. She is Heidi Musser, a blind triathlete and musician. Heidi and Justin bonded very well. Heidi and her mother, Erika, discovered that Justin has perfect pitch. When he hears a song for the first time he can play it back, whether it is classical, jazz, or rock. Heidi and Justin can play the piano side by side for hours. Lessons take a lot of time, but their shared love for music is undeniable.
When Heidi and Erika started to give Justin swim lesson at the YMCA two years ago, he was afraid to get his hair wet. Now he can float, and he can stay down under the water holding his breath.
What would we do without today's technology? Justin totally relies on it day and night, and it allows him to show his true self. He opens up to people instantaneously and shows his humorous side to those who are close to him. He makes me laugh at his jokes.
I have always told stories to Justin, and now he tells me stories, too. When he comes home from school he tells me about his day from start to finish by typing on the Fusion or writing on his BrailleNote. One day he told me that his taxi passed an accident on the way to school. He typed that there were police cars, ambulances, and fire trucks. When I asked the driver about it, he confirmed that it happened the way Justin described it. When they had a fire drill at school, Justin typed out that they had to evacuate the building, and that the sirens were loud.
Justin tells me how he likes my cooking. He types out what he wants to buy at the grocery store. He tells Dad when the TV is too loud. Justin and his best friend, Max, a boy in his class, spend their downtime at school playing music and games on the computer. They also email to each other.
Having technology in our home has been a huge gain. Justin is learning to use his equipment properly, and he knows how to take care of it. He charges the Fusion nightly; he turns it off to save the battery life. He is showing us that he can be responsible.
In the fall semester of ninth grade, Justin received an award as a Distinctive Honor Roll Student. He earned A’s in all seven subjects, and his name appeared on the Dean's List. On the Honor Roll assembly day, March 15, 2012, he went up on the stage and shook hands with the dean and members of the school staff. We have just received a letter confirming that once again Justin attained straight A status for the spring semester. He will add another Distinction Honor Roll Certificate to his portfolio. Justin has also received two certificates from his speech therapists for his effective use of communication technology. We are all very proud of Justin's achievements.
Justin expresses that he would like to go to college and become a computer programmer. He would also love to be a nighttime DJ. We feel that he is going to be successful. He is a very determined young man.
Technology, music, and the right educational environment have opened the way for Justin's success. Still, we know that there is much more work to do. Justin has many skills to learn and a great deal of knowledge to absorb. But his growing confidence is priceless.
Typical kids love high tech devices, and our blind kids are no different. Our kids deserve the same access to technology that sighted kids have. Through sound, Justin actually learns to use technology more quickly than I can using my vision.
I work two jobs, but I always find time to share with Justin. I want to learn what he is learning, and I don't want to miss any magic moments. We have many of those.
Justin is truly a blessing to me. He has enriched my life and taught me to be humble. He has helped me appreciate many things I always took for granted. As I watch him grow into a young man with a purpose in life, I feel joyful and content.
Justin has escaped from being a prisoner of silence. He now feels free. Words cannot describe our gratitude to the NFB of Illinois for pointing us in the right direction and to the SASED Vision staff for their dedication and expertise. Mike and I are eternally grateful to our families; to Heidi and Erika Musser; and to Heather Fritz of Wisconsin, a TVI who performed vision assessments and technology evaluations. Their constant support, prayers, and love have transformed Justin from a mysterious child to a well-mannered, sociable young man.