Thriving Through Connections

NOTE: May is Better Hearing and Speech Month

Jaxson and Donia

By Donia Shirley, Vice President of the National Family Association for Deaf-Blind and parent of Jaxson, a child who is deaf-blind.

When a baby is added to a family, invisible bonds often quickly form with others who have children the same age. For families who have children with complex support needs, that community can seem out of reach, especially when they have a child with a low incidence disability such as deaf-blindness.

A few days after our 6-week-old son Jaxson was transferred to our local children’s hospital, we started receiving diagnoses. We learned he was deaf-blind; he was profoundly Deaf and had colobomas (an eye condition that cannot be completely corrected). The medical team eventually informed us that Jaxson had CHARGE Syndrome.

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Challenges and Barriers to Successful Employment for Man with Visual Impairment

By Louis Herrera

Louis Herrera

Louis Herrera

I was born with normal eyesight, and at the age of three and a half it was determined that I had a visual impairment. By the time that I was about seven years old, I had lost most of my eyesight.

At the inquisitive age of four, I wanted to know how things work and how a box could have different voices coming out of it. Learning about radios was the beginning of a path to a career in the technology industry.

At the age of 15 I built my first computer at a time when components were starting to decrease in size.

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Louis Herrera
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My story: The Benefits of Working with Agencies like the Washington State Department of Services for the Blind

Odyssey Sea

Odyssey Sea

By Odyssey Sea

Getting a job right after I graduated was a very exciting and scary experience. Luckily, I had Washington State Department of Services for the Blind (DSB) staff to help me along the way because without their help, experiencing new things would have been difficult. At first, I was nervous. I wasn’t sure what I wanted to do after high school. Luckily DSB staff stepped in and helped me figure out some things. I am getting job experiences with different companies like the Museum of Flight and at PAVE, a nonprofit that assists young adults like me. PAVE also assists parents, families and anyone connected to a child, youth or young adult with disabilities.

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Odyssey Sea
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No Limits in My Life

By Elizabeth Rouse, Central College Class of 2020

Note:
October 12 is World Sight Day and October 15 is White Cane Safety Day / Blind Awareness Day

Elizabeth Rouse

Elizabeth Rouse

Elizabeth Rouse is a 19-year-old sophomore at Central College in Pella, Iowa. She is pursuing a bachelor’s degree in English with the intention of attending law school in the fall of 2020. In her free time, Elizabeth participates in Bridge Club, belongs to the sorority Zeta Upsilon, and volunteers as a YoungLife leader in her local high school community. 

When I was about five-months-old, my daycare provider noticed I was not tracking things with my eyes in a way that was similar to other babies my age. After a visit to my pediatrician that led to a visit to a genetic specialist at the University of Iowa, my parents discovered that I have Leber’s Congenital Amaurosis (LCA), a genetic disease that stopped the rods from forming in my eyes. This recessive genetic disease is not common. About 3,000 people in the country have it. My vision is 20/400 in both eyes, and it is something that cannot be corrected with glasses. The “cure” is genetic replacement therapy. Being legally blind has proven to be a challenge, but my parents never allowed me to use it as an excuse to sit on the sidelines. They pushed me to excel in everything I chose to do, and they helped me and others who supported me to succeed.

In elementary school, my accommodations were simple. Verbalizing by the teacher, brailled calendars, and other classroom items supported my participation in classroom activities, and, of course, I used a white cane in the hallways. I had a paraprofessional, a wonderful woman named Bonnie, who learned braille and went to trainings to best support my needs and those of my teacher. Over the years, my friends and classmates got used to my needs and pretty much got out of my way in the hallway, limiting the use of my cane indoors. This helped me feel much more like the other students. I am very grateful that my school was small enough to allow me to get to know everyone and create such a level of comfort and success.

In middle school, the challenges began to come more frequently as the curriculum got harder and travel became more a part of my daily experience. My paraprofessional continued to support my needs but in a different way. She went to my classes with me to help me learn how to develop specific skills, such as taking notes. Additionally, class materials, such as quizzes, written up by teachers ahead of time, were sent to be brailled by the Iowa Department of the Blind library services. Any materials needing to be brailled that could not be planned ahead of time were transcribed on sight by my paraprofessional.

My textbooks were also available in braille, but these presented a challenge in and of themselves. Because braille takes up a ridiculous amount of space, a normal sized textbook for history or science could be anywhere from 25 to 40 volumes in braille. This made carting my materials from class to class a bit more difficult. The administration in my school allowed me a rolling backpack to lessen the stress on my back. Additionally, I was given a bigger locker than most of the other students to compensate for my larger amount of materials. While I did not want to use my white cane, I found I had to use it to get used to traveling in the middle school as well as let others know of my presence. Eventually, I was able to use it infrequently, as I had done in elementary school.

When I started high school, I was terrified. As I have an older brother, I knew some of the classes I would have to take would be a bit difficult. I am forever grateful to the teachers I had my freshman year as they made my transition to and experience in high school much less stressful. I specifically remember having a biology teacher who went above and beyond to make sure I was included in the learning experience just as much as the other students in my class. The teachers and I learned how to learn together in many ways. Flash drives for exchanging content and assignments became an important tool for us.

Additionally, I was a bit nervous about extracurricular activities. Most of my friends were athletes, but I could not participate in volleyball, basketball, or other fast-paced sports. However, this caused me to seek participation in other activities. Throughout high school, I was an avid member of the choir and theatrical programs in my school. I led my team in a battle of the books club competition, and I was the president of Family, Career and Community Leaders of America. I was super stoked my sophomore year when I decided to become a member of the wrestling cheerleading squad and found much success.

I graduated in 2016 valedictorian of my class and received multiple high-value scholarships to different universities. I chose Central College in Pella, Iowa. As a sophomore, I could not ask for a better place for me to earn my undergraduate degree. I plan to major in English with minors in theatre and religion. My long-term plan is to go to law school.

What I have learned in my life is that the only limits I have are those I put on myself and there is nothing embarrassing about asking for help. My journey so far has helped me understand that achieving greatness is not tied to my gender, race, socioeconomic status, or any accommodation I may have gotten in order for me to have a level playing field. Greatness is achieved because of effort and discipline. Those come from my own desire to be the best at what I choose to do, vision excluded.

Thank you so much for taking the time to read my blog post. If I could teach everyone in the world one thing, I would like to project that just because a person has some limitation that is out of their control does not mean they are less of a person. Given the right tools and supportive people who want to see them succeed, the possibilities are limitless.

Blog articles provide insights on the activities of schools, programs, grantees, and other education stakeholders to promote continuing discussion of educational innovation and reform. Articles do not endorse any educational product, service, curriculum or pedagogy.

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Central College Class of 2020

10 Million Book Downloads Today Provides a 10x Model for Tomorrow

This is a cross-post from the Benetech Blog. Benetech is a grantee of the U.S. Department of Education, Office of Special Education Programs (OSEP)

By

Many years ago I had the wild idea to start a deliberately nonprofit technology company in the heart of Silicon Valley. I knew that technology, when applied for social good, promised to usher in positive and sustainable change. Today’s 10 million download milestone is a celebration of our ability to deliver on that promise.

Ten million is more than a big number. It represents our ability to scale technology for global impact. It demonstrates what is possible when technology makes it 80x cheaper to create and 15x cheaper to deliver an accessible book. It shows our ability to empower communities in need with the tools to succeed.10 million download with Bookshare logo

Today’s milestone is worth celebrating, but like any good social entrepreneur, I’m focused on what’s next. What innovation needs to take place so the hundreds of millions of individuals who are unable to read standard print can access every published book? How can we realize our Born Accessible dream of all digital content serving blind people and sighted people equally?  What investments can we make today in order to have the greatest impact tomorrow? Finding answers to these hard questions through scalable technology solutions is what motivates me and the entire Benetech team.

Bookshare’s success provides a proven model for answering these questions. First, we must identify technology-driven solutions that will be 10x better or 10x cheaper (or both!) in delivering social impact. Next, we must engage our communities to test prototypes and to separate the good ideas from the truly great ideas. We will then take the best projects, inject the needed capital and scale them for global impact. The Bookshare model guided us to our 10 million milestone, and it’s a key model that will guide us to identify, develop and scale technology to tackle the hard questions we ask ourselves every day.

Moving forward, we will work hand-in-hand with school districts, libraries and our nonprofit partner organizations to make digital content accessible to everyone who needs it. We will work with publishers to ensure the right tools, standards and best practices are available to build accessibility into all content when it is first created. Globally, we will engage the communities we serve until every person can access every book in the way he or she needs to succeed.

I look forward to sharing more milestones on our mission to empower communities in need by creating scalable technology solutions. I hope you’ll come along with me and the Benetech team on this wild ride.

Check out the press release to learn more about this exciting milestone.

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Founder & CEO, Benetech

Interveners and Children Who are Deaf-Blind

Technology, supports and services for children who are deaf-blind have come a long way since Helen Keller first responded to Anne Sullivan’s efforts to help her learn.

The importance of intervener services today for many children who are deaf-blind children cannot be overstated. The National Center on Deaf-Blindness (NCDB) defines this service as providing access to information and communication and facilitating the development of social and emotional well-being for children who are deaf-blind.

In educational environments, intervener services are provided by an individual, typically a paraeducator, who has received specialized training in deaf-blindness and the process of intervention. An intervener provides consistent one-to-one support to a student who is deaf-blind (age three through 21) throughout the instructional day.

The NCDB is funded by OSERS’ Office of Special Education Programs (OSEP) as a national technical assistance center to improve the quality of life and educational opportunities for the roughly 10,000 children who are deaf-blind. Deaf-blindness is a low incidence disability and within this population of children there is great variability. Ninety percent of children who are identified as deaf-blind have additional physical, medical and/or cognitive disabilities. Without supports, these children are cut off from most, if not all, communication and activities in their environments. Thus, it is clear that many of these children can, and do, benefit from services offered by trained interveners.

Because we recognize that parents are best able to describe their child’s educational experience, consider these comments from parents of children who are deaf-blind who have written to express their thoughts about what happens when their child has an intervener:

“My child’s educational experience over the past four years has been exceptional with the expertise and training his intervener has provided. An intervener is specially trained to work with my son who is deaf-blind. Their ability to engage my child in activities and learning as well as connect them with their peers and teachers is simply a necessity to my child’s education. My son feels included, appreciated and ABLE; thanks to the support and encouragement his intervener adds to his education. Without her, he would be lost.”

Jackie Bauer

“When we were told our child was deaf-blind, we had no idea what to do. We didn’t know if we would ever be able to communicate with her or if she would be able to let us know what she needed. Her interveners have taught us how to talk to our daughter. They have given us and her, the tools we needed to interact. They are her bridge to the world and I’m so thankful every day that she has people who support her learning and help the world learn about her. Through interveners I have come to know my daughter better and know better how to do with her, not for her or to her. If you have chosen this career, you are a very special person and through hard work and believing in your student, you will make a deeply felt difference in not only the life of the person you intervene for, but the lives of everyone that person touches.”

Emily Gold

“Our son Matthew has had an intervener in the school system and community for a number of years. The benefits from having this highly trained support person have been enormous. I believe the intervener is an ambassador for our son—modifying his school projects to make them fit his needs, being his eyes and ears when he is in an environment and needs assistance understanding what is around him, enabling social connections and doing all these without being too present in his area. The intervener has the knowledge of how to do the job but not do the job for the person they are working with. Matthew would not benefit from having someone do everything for him but doing just enough that he can participate to the fullest in each one of his daily settings. Many, many teachers have commented to me what a valuable resource Matthew’s intervener has been to them.”

Michele Pedersen

“Having interveners in my sons life has made a drastic change in his education and his daily living. He is finally able to communicate with others around him, which has helped him not only in his education, but in his daily living. Imagine trying to learn when you can’t hear and have difficulty seeing. Interveners bring it all together. They provide the light in a dark world and sound in the silence. Best thing to happen with his education ever! They are absolutely AMAZING!”

Hatti Edwards

“When Anna didn’t have a full time intervener at school she would get frustrated to the point of not being able to finish the school day and a parent would have to go pick her up. It was very frustrating for Anna, school staff and her parents. Anna has had a full time intervener for the last 4 years she is able to finish every school day and her outbursts are seldom and don’t last as long. Her intervener helps her stay on task and not get or feel lost or left out during school. Without her intervener she would not be able to handle the different transitions that take place during a full school week. As parents, we feel very grateful for this service.”

Greg and Beth Volkers

 

Posted by
OSERS Project Officer—National Center on Deaf-Blindness and several State Deaf-Blind Technical Assistance Project.