FamilyConnect

As an infant, Michelle was diagnosed with Rod Cone Dystrophy. During grade school, her diagnosis was changed to Leber’s Congenital Amaurosis or an early onset form of Retinitis Pigmentosa. Michelle’s vision loss was gradual. “It was during elementary school that I began to notice my vision changing. I was not able to see things I could previously see such as enlarged print.” Michelle is now 18, and she realizes her residual vision will most likely deteriorate completely. “I am prepared for that to happen and so I try to enjoy using the small amount of vision I do have.” Michelle explained she can perceive light, shadows, and large objects. As I sat across a three-foot table from Michelle, she explained she could see the outline or shape of my face, but she could not see the details of my face such as my eyes, smile, or freckles.

Throughout her middle school days, Michelle found it extremely tough to accept she was visually impaired and needed specialized instruction. “That time of your life is already a difficult period to transition into, and the fact I had a challenge which made me different from everyone else made it that much more trying. I simply wanted to be like everyone else. I refused to use my cane, which created some unnecessary and self-inflicted challenges. When I was told about a transition program I could attend that was just for blind and visually impaired teens, I responded by telling my parents and teacher of students with visual impairments I did not want to hang out with ‘those people.’ I was in denial about my limitations.”

Technology and Braille

Michelle attributes the purchase of her iPhone to a pivotal moment during her bumpy journey in middle school. “When I learned I could independently operate an iPhone by using the accessibility features, I was eager to learn more about how I could increase my independence in other areas. Learning to use the iPhone gave me access to a cell phone, music, texts, email, etc. Even more importantly, I was using the same device as many of my peers. After I learned how to use the iPhone, I was willing to put more time and effort into learning to use JAWS on my laptop. I even began to use technology more openly in my classes amongst my peers. I appreciated having choices.” Reflecting back, Michelle is confident having choices regarding the technology she used to complete assignments and her decision to use technology more openly in her classes are the reasons why she is proficient in using a variety of technology today.

Learning to read, write, and access braille has been extremely important to Michelle along her educational journey. Although she had some functional vision in elementary school, Michelle began learning braille in Pre-K, and by second grade, she had learned to read and write the entire braille code. Participating in the Braille Challenge, an academic competition that supports the study and use of braille, motivated Michelle to increase her braille reading speed and to improve her listening skills. In fact, she won first place in the Braille Challenge Regionals nine times and participated in the National Braille Challenge several times.

Michelle believes students should be encouraged to learn braille before learning how to use JAWS, Voiceover, or other screen readers. “Learning braille teaches you how to read and write. It is the foundation. Now that I am in college, I continue to use braille to take notes. However, I realize getting materials in braille may not always be feasible, so I am prepared to use my laptop to access digital materials as well as my braille display. I have figured out what technology works best for me in various situations, and I use it to accomplish my goals.”

Self-Determined

Another pivotal moment in Michelle’s educational journey was when she reached the age of majority and her rights as an adult were transferred to her as part of her Individualized Education Plan (IEP). “I felt wonderful when that happened. I was at a point where I knew exactly what I needed to be successful. When I turned 18, I made sure my voice was heard, and I spoke to my IEP team about the changes I wanted to be made in regards to my special education services and my IEP goals.”

Before Michelle’s senior year of high school, she and her IEP team members agreed she was ready to receive less support from her teacher of students with visual impairments in efforts to prepare her for college. “I definitely had to take charge and advocate for my needs. Having minimal support from a teacher of the visually impaired during my senior year in high school prepared me for college because I am now responsible for advocating for myself—no one else. I am not afraid to advocate for my needs. In fact, I enjoy educating others about my disability and showing them I can be just as independent as other students.”

Social Experiences and the Importance of Volunteering

Making friends was Michelle’s greatest challenge in high school. “I am naturally shy, so I had to push myself out of my comfort zone. I learned if I wanted to have friends I had to make an effort. I could not expect people to approach me. I had to make an attempt to seek out people to talk to. I wish I had done this in middle school because now I have many great friends. Earlier, I was not really comfortable with who I was as a person and so seeking out friendships was difficult for me. Along the way, I’ve learned to distinguish between good friends who are healthy for me to be around versus friends who may not make good choices and those who may not be good for me to have in my network.”

In high school, Michelle became involved in extracurricular activities, including theater, band, and volunteer work. Michelle explained, “Learning to play the saxophone helped me to overcome my shyness more, especially when I had my first concert. I did not know the music very well, so I pretended to play some parts. It did not matter because I was proud to be part of the band and enjoyed what I learned from being in the concert.”

During her high school career, Michelle donated her time and talents to tutor and mentor younger students who are visually impaired and were learning braille. As a result of her volunteerism with the elementary-aged students, Michelle received a “Young Hero’s Award.” Michelle’s volunteer efforts also include time at a local animal shelter and an assisted living facility.

Staying active is another factor that Michelle shared attributed to her success. In elementary school, she took gymnastics, rode horses, and tried archery. “Now, I enjoy running with my mom on the weekends and swimming. I’m not competitive but participating in fitness activities gives me a sense of accomplishment. It is important for me to have something to do. I enjoy listening to music, reading, writing, and watching shows on Netflix. I find that my enjoyment for reading and writing help me to relieve stress. I know I need to do things that are fulfilling and watching TV all the time is not a good way to for me to spend my free time.” Michelle desires to remain active as a college student and is currently exploring local Judo classes.

Orientation and Mobility

Michelle’s specialized and long-term instruction in orientation and mobility is a service Michelle believes boosted her self-confidence as a teenager and truly prepared her for college. When Michelle turned 16 and was not able to drive a car, she was disheartened she did not have the same rite of passage as her peers but strived to overcome her disappointment. “It helped that my mobility instructor exposed me to many environments such as fancy places, busy places, isolated places, etc. I learned about the world around me and built images in my head.” Not only did Michelle learn how to use cabs, but she also learned how to use the public bus system in her community. Most importantly, she learned to use her cane across an array of environments and in time, if she heard it referred to as a “blind stick,” she did not put it away out of embarrassment. Instead, she began using those opportunities to educate people about her cane and the independence it gives her.

Michelle is proud to share how instrumental her parents were in helping her to become an independent traveler beyond her community. “When my sister lived overseas, I traveled on an airplane to see her by myself. My parents were initially nervous, but after my mobility instructor took me to the airport to practice routes inside the airport, they felt more comfortable. They already knew how well I could navigate my community, and that given the opportunity, I could take care of myself. I proved to them I could travel independently. In fact, the summer before my senior year in school, I took an airplane to North Carolina to attend a college preparatory camp. I also took a trip to Baltimore and stayed in a hotel by myself.”

For other students who are not able to drive, Michelle advises learning to use the public transportation systems around them. “As soon as you can, learn about your community such as what roads you live on and the directions to get to popular and frequented destinations. For a long time, I knew I lived in a certain city, but I did not know the names of the roads around me or where I lived in comparison to my friends. It is important to know exactly where you are going in relationship to other places and even other people’s homes.”

Michelle attributes one of the most exciting times of her life to her dedication to learning to use her cane. Prior to starting college in August, Michelle spent three weeks training and ultimately graduated from The Seeing Eye with her guide dog, Fortune. “Fortune symbolizes how far I have come in my personal journey. My ultimate goal was to be an independent and diversified traveler, and now I have all the skills I need to do so. I will still use my cane, but with Fortune, I am more relaxed and confident as I travel on my college campus. Having her with me is liberating and is the beginning of a new chapter of independence and greatness in my life. She symbolizes all of my years of hard work in learning to use my cane as well as learning to use public transportation in a variety of environments.”

Personal Reflections

Michelle’s story doesn’t end with graduation and the start of college. She shared she desires to move out from her parents’ home to live on her own. She explained she is well prepared to live on her own and hopes to do so on or near campus next year. “I am ready for this next step because of the skills I have learned from my family as well as from participating in my local transition program after school. In fact, I am responsible for doing most of the chores at home. I wash the dishes, vacuum, clean the windows, clean the bathrooms, clean my room, take out the trash, and occasionally, I help my mom cook.”

Michelle credits her family and friends for assisting her in making good decisions that helped put her on the path to college. “My family has always supported and pushed me. But mostly, they did not coddle me. They encouraged me to try new things and to be independent. I am thankful I’ve had their support.”

“Looking back, I wish I had a mentor (besides my vision teachers) when I was growing up and navigating elementary and middle school. I was so defiant. I would have appreciated someone who is visually impaired telling me to listen and learn. I wish I knew that I was going to be okay and that the personal experiences I had in school would help me become who I am today.”

As you begin this new school year as a parent, teacher, or student, I encourage you to reflect on Michelle’s journey. What can you do to help your child, your student, or even yourself achieve greatness and individual success this school year? What can you do to shape your child, student, or yourself into a self-determined young adult who is prepared for life beyond high school?