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A Publication about Visual Impairments and Deafblindness for Families and Professionals

By: Andrew Cohen, DeafBlind Camp of Texas President

Abstract: Read about an exciting camping experience for adults with deafblindness

Keywords: Family Wisdom, DeafBlind camp, recreation, community, adults, Service Support

 

A Note about the use of the term DeafBlind: On April 6, 2016, the American Association of the Deaf-Blind (AADB) released a statement to the community that announced they are changing the spelling of the organization to American Association of the DeafBlind, thereby eliminating the hyphen, because there “...is the need to shift from a medical view of being a DeafBlind person to a cultural one. We now view our community as a cultural community.” This name change was “overwhelmingly passed by the active members with approximately 90%” voting in favor of the name change. Culture and Language instills a sense of pride, belonging, and community.

Individuals 18 years old and above and with varying degrees of hearing and vision loss known as DeafBlind have always dreamt of a safe, fun, barrier-free place where they could learn from each other and gain rich experiences. It is no longer a dream! Jacqueline Izaguirre, Kim Huston, Todd Huston, Kelly Brittingham, and Andrew Cohen met in early March 2016. Since then, the DeafBlind Camp of Texas organization has received nonprofit status. The organization’s goal is to bring every DeafBlind individual to a safe and barrier-free place for empowerment training.

The very first and hopefully annual DeafBlind Camp of Texas (DBCTX) was held at Variety's Peaceable Kingdom September 2nd to September 5th. Nearly 40 people including 10 DeafBlind individuals and 25 Support Service Providers participated in this magical journey!

Many recreational activities were offered at the camp such as climbing wall, zip line, high swing, archery, art and crafts, dancing, camp fire with s’mores, support groups, swimming, putt putt golf, slip and slide, and many more. All activities were completely accessible. Braille schedules, menus, and tactile maps were provided to braille readers. Wheelchair users were accommodated. Hayley Broadway and Kris Lund, Support Service Provider (SSP) Coordinators, assigned at least two Support Service Providers (SSPs) to each camper to provide visual information, human guide, and communication. Communication was provided in whatever mode met the needs of the camper: American Sign Language including tactile, spoken English, amplified sound, or written media.

What are Support Service Providers (SSP's)? Unlike interveners who help DeafBlind individuals make decisions, SSP's provide support that enhances independence (for example: facilitating environmental communication, providing sighted guidance). SSP's are not personal attendants nor interpreters. DeafBlind individuals are empowered to make autonomous decisions through their SSP.

Everyone including the volunteers kept asking for more! One camper was, in fact, grouchy on the last day because she did not want the camp to end! Another camper said "The interaction between hearing impaired and totally DeafBlind was amazing!” Students from Lamar University and Austin Community College informed us they are coming back and they will bring more volunteers!

It has been inspiring and a sheer joy to witness the dream becoming a reality. We at DeafBlind Camp of Texas hope to grow the camp on an annual basis, but we cannot do it without your help. The camp runs on purely donations. Everyone involved in the camp is a volunteer including the planning committee, the coordinators, and the SSPs. For more information, please go to www.dbctx.org and check out our social media (Facebook, Twitter, and Instagram) for awesome pictures and videos!

 

picture of female on waterslide
Photo of Natalie, a DeafBlind adult, in a blue bath suit experiencing the rush of cool water against her face while sliding across the water slide!

 

image of students helping each other
Photo of Amanda, a DeafBlind young lady, having a blast with another DeafBlind friend, Patsy, at the putt putt course with Samantha, a SSP, standing behind them
image of a man climbing a rock wall
Photo of Gene, an individual with deafblindness, courageously climbing the rock wall alone!

By: Andrea Wade, Parent

Abstract: Learn about this family’s attendance at the recent conference of the National Organization for Albinism and Hypopigmentation, as well as what they learned about albinism and life in general.

Key Words: Albinism, conference, friend

My name is Andrea Wade. My husband, Sean, and I have a 7-year-old daughter, Elizabeth, who has albinism. Albinism is an inherited condition in which people have little or no pigment in their skin, hair and/or eyes. They have inherited genes that do not make the usual amount of a pigment called melanin. About one in 17,000 people in the U.S. have some type of albinism. Although Elizabeth was born with a head full of white hair, we didn’t learn that she had albinism until she was about six weeks old. We understood that we needed to take necessary precautions to protect her while she was out in the sun by wearing sunscreen, sunglasses and protective clothing. One issue that we were completely unaware of is that people with albinism always have a visual impairment and it is not something that is correctable with glasses or surgery. The degree of visual impairment varies, but many people with albinism are considered legally blind. At our most recent visit to the eye doctor, Elizabeth’s corrected vision was 20/200.

Since learning that Elizabeth has albinism, we became members of a wonderful organization called NOAH (National Organization for Albinism and Hypopigmentation). NOAH hosts a national conference every other summer and this past July was our third time attending the conference. The conference this year was in Pittsburgh and our whole family attended. In addition to Elizabeth, we have a 5-year-old son, Joseph, who does not have albinism.

The NOAH conference consists of various workshops for parents of children with albinism and adults with albinism, as well as a number of planned social activities. One of the social activities we signed up for was spending the evening at the Carnegie Science Sportsworks Center. NOAH had reserved the 12,000 square foot building for the evening and attendees could clock how fast they can run the 10 yard dash or throw a fast ball, try a rock climbing wall, see how high they can jump, and become a human yo-yo just to name a few! The kids and adults had a blast trying out all of these fun activities. Now, I have to admit, I had one of those parent fail moments to my visually impaired child. Elizabeth was standing in line for her second chance at becoming the human yo-yo and Joseph was tugging on my pant leg begging me to race him in the 10 yard dash. I agreed to race him and without even thinking, walked to the small track area (about 50 feet away). You know where this is going. Elizabeth finished yo-yo-ing herself and then couldn’t find me in the place where I had been, and I obviously forgot to tell her where I was headed. We eventually reconnected, but she was in tears because she couldn’t find me and I was angry with myself for being so absent minded. Lesson learned. It reminded me how much we take our vision for granted, as well as the importance of essential communication with our kiddos.

picture of a boy and girl in sunglasses
Photo of Elizabeth and Joseph outdoors wearing sunglasses

 

Although this was our third conference, I still find myself wanting to attend multiple sessions that are being presented at the same time! I was drawn to the scientific topics this year. There was information on the latest research in albinism. There are actually seven different types of albinism and one research question asked, “Is visual acuity different in different types of albinism?” The information presented found that yes, it is different (in the 15 and older age group) when different types of albinism are compared. Also, since melanin is needed for development of the very back part of the eye (the fovea), could improving melanin synthesis during the time of eye development also then improve vision? Now, the pilot study involves five adults and the goal is to increase melanin production. But ultimately, the scientists are hoping to find a treatment that could be given to children during foveal development that could improve their vision. Another session I really enjoyed was “iPad Apps for Education.” Clearly, we live in a technological world and although some are resistant to how things are changing, technology advances are so useful to those with visual impairments. The presenter talked about “Genius Scan” which allows you to scan a worksheet on your iPad, open it in “Goodreader” or “Notability,” complete the assignment (without having to strain to see that tiny print!) and then print it out or email it back to the teacher. “Notability” also allows a student to organize their work in folders which seems like a rather important task to master as our kids get older. I left this session feeling amazed at what people come up with and comforted knowing Elizabeth will have a varied group of “tools” to help her navigate school and work.

picture of three girls hugging
Photo of Elizabeth and two other little girls with albinism

 

Often times, what kids are learning is more important than what the adults are finding out about in their sessions. I love asking kids about their experiences to find out what impressed them most. I thought I would include some Q&A from Elizabeth and Joseph and get their insights into our trip!

  • Q: What was your favorite part of the NOAH conference?
  • Elizabeth: "Getting to see Sadie, my friend with albinism. She is from Canada."
  • Joseph: "I got to see new people."
  • Q: What’s one thing you learned at the NOAH conference?
  • Elizabeth: "That some people are there because they know people that have albinism. Not everyone at the conference had albinism."
  • Joseph: "You should treat others the way you want to be treated."
  • Q: What was your favorite part about the trip?
  • Elizabeth: "There was a ballroom in the hotel and we got to have a dance there Saturday night."
  • Joseph: "We brought snacks on the airplane."

This NOAH conference was the biggest yet with over 1000 people in attendance. Each conference gives us new insights and valuable information. In addition to the sessions, some of the best parts of attending are the casual conversations while at breakfast or lunch, as well as the party on Saturday evening. It is so much fun to watch the kids dance and enjoy themselves. Sometimes, I think, wow, if we didn’t have Elizabeth, we wouldn’t have met all of these great people, or had any of these experiences. Honestly, I knew nothing about albinism before Elizabeth was born. I didn’t even know the word “albinism.” Knowledge gives us a new perspective. It helps us grow in ways we didn’t know we could grow! One of the facilitators of the mother’s workshop I attended talked about how she tried to make everything with her kids an “adventure”! Even the most mundane and what might be difficult activities (like sometimes having to eat lunch by yourself in the cafeteria) became adventures. That really struck a chord with me. Our goal is to look at those daily routines that can be a struggle and turn them into something fun, to put a different spin on it. I hope you can take a step back, see all that is good and enjoy your adventure too!

picture of children in front of a skyline
Photo of Elizabeth and Joseph in front of the skyline of Pittsburgh

By: Ann Foxworth, Texas School for the Blind and Visually Impaired Alumnus

Abstract: Enjoy reading about this blind adult’s journey through life and how her family supported her to become independent and have a full and fulfilling life.

Keywords: blind, school, employment

Floyd and Mary McMullen rejoiced as they welcomed their third daughter into the world. But, after four months, they sat in the pediatrician’s office and were filled with fear and dismay as they listened to the doctor telling them their new baby daughter, Ann, was blind, and there was no procedure to restore her sight. Their hearts were heavy as they grieved for the loss of a normal life for their youngest child.

Floyd and Mary came from hard working families and they had excellent problem-solving skills. They made a decision to raise Ann using the same techniques they were using with their older daughters.

And so, Ann began her “normal” life, that her parents loved her enough to give her. They allowed Ann to find her own way through exploring her surroundings, always watchful, but never, ever hovering. She learned to roller skate, ride a bike and swim. Ann was enrolled in kindergarten at age five, and successfully and happily completed the program. At age six, Ann was placed into a contained classroom for blind children, in a public school, where she completed first through fifth grades.

The family was forced by changing circumstances, to move out of Fort Worth and the decision was made for Ann to complete her education at the Texas School for the Blind and Visually Impaired (TSBVI), in Austin. Floyd and Mary’s hearts once again breaking, on Ann’s behalf, made the 200-mile journey to Austin and settled Ann into her new life as a student. As they returned home to face the imminent death of Floyd, due to a lung disease, they grieved for their little girl, just eleven years old, 200 miles away from them. But they kept that hope for a “normal” life for Ann at the front of their minds and worked through their grief.

Ann was happily settling into her new school; making friends and learning how to live in a community of peers. She received the news of her father’s death just three months after leaving home. Ann learned, many years later, just how desperately her father had longed to go to Austin and bring her home again, and how he had quelled that longing by reminding himself that Ann was learning to be independent and adjusting to life as a blind person.

Ann enjoyed seven happy years at TSBVI, where she studied hard, grew into a young adult, and found dreams of her own. Ann graduated with honors and set out, with a positive outlook, into the world. She entered the Business Enterprises of Texas program, where she managed cafeterias for over seven years. She married and welcomed her son, and seven years later, a daughter. Her life was full, and that “normal” life her parents hoped for was a reality. Her days were filled with raising her children, and all the challenges and rewards found in parenthood.

When her children were independent adults with their own lives, Ann, at age 43 decided to start a new career. She became the first blind person to hold a position as Rehabilitation Assistant at Division for Blind Services (DBS). She worked in this position at Criss Cole Rehabilitation Center for five years. During that time, Ann was often requested for substitute teaching needs across several departments at the Center. After five years, Ann was offered a position as a Rehabilitation Teacher, where she developed and administered a program for skills integration for students about to graduate from the Center’s programs.

Ann found another opportunity with Division for Blind Services as a braille transcriber. Her love for teaching and producing braille made this work a perfect fit for her. After two years in the Braille Unit, Ann was presented with yet another opportunity to live her passion to promote braille as literacy for all people who are blind, in a position as Statewide Braille Consultant. She developed and administered a program for providing DBS Field and Center Rehabilitation Teachers the skills to teach braille. She wrote several manuals for use by teachers of braille, which proved invaluable to the agency’s seventy Rehabilitation Teachers across the state.

Ann is an active member of the American Council of the Blind, an organization that promotes independence and self advocacy for all blind Americans. She is active in her church, serving on boards, committees, and community outreach programs. Floyd and Mary’s dream for their youngest daughter to have a full, productive and “normal” life, has been realized. They gave the greatest gift they could; the gift of loving support, and letting go.

By: Heather Withrow, DBMAT Board Member & Blogger, Austin

Abstract: The author shares how she partnered with a cake artist to make her son’s birthday cake a meaningful and accessible experience.

Keywords: family wisdom, DeafBlind, birthday celebration, full accessibility, tactile

Editor’s Note: We are thankful that Heather has given us permission to share another of her blog postings where she shares her insights and DeafBlind geekiness. If you haven’t had the pleasure of reading Heather’s blog, we invite you to visit her at http://hexwit.blogspot.com

Photo of a boy eating pieces cake components
Photo of Orion enjoying a chocolate ball from his name

 

Orion had one of the most unique and DeafBlind-intriguing birthday cakes ever to celebrate his 6th birthday! This special cake was created by Tina and Amy with "that. specialty cake company," located in Austin, Texas. It had beautiful marbleized blue and purple fondant, Orion’s name was spelled in braille with white chocolate balls, and you can see and feel a few candied constellations along the cake’s side. Inside was the chocolatiest triple chocolate I’ve ever tasted, so yummy that there were none left over after the party.

picture of a birthday cake
Photo of a flat, round blue marbleized fondant covered cake has "o r i o n" spelled in braille chocolate balls on top. Constellations are visible on the sides- Orion and the Big Dipper. Yellow balls are strung around the entire bottom circumference of the cake

 

Amy and I talked about doing a special tactile and interactive cake for Orion’s 6th birthday, a great idea right from the start! I’ve always included candles for his birthday even though it was so awkward, perhaps a tactile oxymoron, that I wanted him to touch but then didn’t want him touch when they were lit. The chocolate balls were on top of toothpicks that were inserted on top of the cake for Orion himself to remove and enjoy thoroughly on his terms, instead of candles.

photo of people signing happy birthday
Photo description: Happy Birthday To You! (Everyone's finger pointing "You" at Orion while Dad signs "Birthday" on Orion.

 

He was already fussing when we were about to present the cake to him. To let him know that we were going to have cake, I gave him a cupcake wrapper to help clue him in on what’s going to happen. He’s always had cupcakes for his birthday so this one was going to be a surprise in two ways, it’s not cupcakes and it’s awesome! The wrapper calmed him down as he crunched it in his hands. We set the cake down in front of him sitting in his red wagon, he touched the cake, picked and pulled at the fondant and once he discovered the Orion braille in chocolate balls, he committed to eating them. He totally touched that cake! Each slice a guest had was blessed by Orion’s fingerprints.

picture of boy eating cake
Photo Description: Orion works on the last braille dot and feels Mom cutting apart the last pieces of cake

 

picture of boy with cake and siblings
Photo Description: Orion and his siblings pose with the cake after Orion started picking off the chocolate balls

 

Amy has a special place in Orion and our family’s life. She was Orion’s first teacher, even though she trained as a teacher of the Deaf, when we moved to Austin just in time for the 2012-2013 school year. Amy dove in head first, learning how to work with our precious DeafBlind 2 year-old son. We immediately saw her on the floor with him, putting herself in his skin (I’d say “his shoes” but Orion doesn’t like wearing them) as well as going to workshops, taking intervener courses and geeking out on DeafBlind strategies. Orion was so very fortunate to have her on his team early on! Now the same Amy we know is in a different setting and is not a stranger to Orion. She’s in the kitchen now, creating eye-catching specialty cakes with her business partner, Tina. She still does intervener work with Orion.

boy being held in a womans arms
Photo Description: Amy holds chocolate-mouthed Orion

 

Little did I know, she and my husband, Thomas, schemed up yet another awesome surprise cake to celebrate my 40th birthday. "that. specialty cake company" also made my birthday cake!

picture of multi layer cake with edible art
Photo Description: Two tiers of cake and edible art!

FAMILY WISDOM

  • Touch That Cake!

    • Abstract: The author shares how she partnered with a cake artist to make her son’s birthday cake a meaningful and accessible experience.
    • Audio: Touch that Cake!
  • The Greatest Love

    • Abstract: Enjoy reading about this blind adult’s journey through life and how her family supported her to become independent and have a full and fulfilling life.
    • Audio: The Greatest Love
  • Travels to Pittsburgh

    • Abstract: Learn about this family’s attendance at the recent conference of the National Organization for Albinism and Hypopigmentation, as well as what they learned about albinism and life in general.
    • Audio: Travels to Pittsburgh
  • DeafBlind CAN at DeafBlind Camp of Texas

    • Abstract: Read about an exciting camping experience for adults with deafblindness.
    • Audio: DeafBlind CAN at DeafBlind Camp of Texas
  • Mobilizing a National Family Leadership Network:
    Highlights from the 2016 NFADB Symposium

    • Abstract: A Texas family leader shares her experience at the 2016 National Family Association for Deaf-Blind Symposium, which was held in Austin, TX.
    • Audio: NFADB Symposium


EFFECTIVE PRACTICES

  • The Art of Student Observation

    • Abstract: The authors stress the importance of observing students in their natural environments for the purpose of planning intervention and specialized instruction. Steps for the observation process are provided along with a rationale for each step.
    • Audio: The Art of Student Observation
  • The Development of Tactile Skills

    • Abstract: This article provides information on the development of tactile skills in students with visual impairments, including those with low vision. It explains the importance of the Hierarchy of Tactile Skills and includes suggestions for activities and resources.
    • Audio: Development of Tactile Skills
  • Tactile Books for Very Young Children

    • Abstract: Media and methods for adapting mass market books to tactile and braille books, and experience books which include real objects.
    • Audio: Tactile Books for Very Young Children
  • Gifts to Get Kids who are Blind,
    Visually Impaired or Have Additional Disabilities

    • Abstract: A discussion of toys appropriate for children who are in the early childhood years and have visual impairment, deafblindness, and/or additional disabilities.
    • Audio: Gifts to Get Kids who are Blind, Visually Impaired or Have Additional Disabilities


NEWS AND VIEWS