If you are on the UPBC email list, you are probably darn sick of the plethora of emails I have sent out. There are some amazing opportunities for blind and visually impaired children and teens coming up in the Spring and Summer. Spread the word, mark your calendars and apply if you have any interest.
Braille Readers Are Leaders Contest (now- January)
UFB Braille Challenge Book Club (now-March)
Utah Braille Challenge- March 5, 2010 (deadline February 5)
NFB Junior Science Academy (ages 8-12)-July 28-August 1 or August 4-8th (deadline March 1)
NFB Law Program (ages 12-16)- April 16-20 (deadline February 1)
Please contact me at: palmermommy@q.com if you want more information or a direct link.
The Utah Parents of Blind Children (UPBC) is a state wide group of parents dedicated to the education and advancement of children with visual impairments - whether blind, partially sighted or having multiple disabilities including visual impairment.
What is the UPBC?
The purpose of the organization is to create a climate of opportunity for blind children in home, school and society; to provide information and support to parents of blind children; to facilitate the sharing of experiences and concerns among parents of blind children; to develop and expand resources available to parents and their blind children; to help parents of blind children gain understanding and perspective through partnership and contact with blind adults; and to function as an integral part of the National Federation of the Blind and the National Organization of Parents of Blind Children in their ongoing efforts to eliminate discrimination and prejudice against the blind and to achieve for the blind security, equality and opportunity.
The membership is open to parents of blind children, educators of blind children and others interested in promoting the purposes of this organization.
We are a division of the National Federation of the Blind which is the largest organization of the blind in the country. Refer to: http://www.nfb.org/
Utah Parents of Blind Children is a 501(c)(3) Non-Profit Organization
The membership is open to parents of blind children, educators of blind children and others interested in promoting the purposes of this organization.
We are a division of the National Federation of the Blind which is the largest organization of the blind in the country. Refer to: http://www.nfb.org/
Utah Parents of Blind Children is a 501(c)(3) Non-Profit Organization
Monday, November 30, 2009
Thursday, September 24, 2009
Seeing Burgon: Blind, deaf teen lives her life to the fullest
Deseret News
Published: Sunday, Sept. 20, 2009 8:23 p.m. MDT
Where do we begin a story about Burgon Jensen?
We could start with a cursory introduction: She's an 18-year-old honors student at Hillcrest High School.
We could describe some of her activities — she rides horses, skis, rock climbs, shops, hikes, and reads and writes prolifically, among other things. If you really want to know who she is, read her poetry. (You will if you read on.) She also sang and danced in a school play and was voted to the school's Peer Leadership Team by her peers.
We could continue the introduction with a description — she is slender, with long, silky hair the color of honey and vivid blue eyes that tremble but do not see.
Oh, and we could also mention that Burgon Jensen is blind and deaf. (Now go back and reread the previous paragraphs.)
Burgon is as pleasant as a Sunday morning — serene, guileless, humorous and perceptive — and everyone who interacts with her tends to gush like this:
"She's one of the most inspirational students I've ever worked with," says Karen Brown, a teacher and counselor for 28 years who works at Hillcrest High. "It's not because she's blind and I feel sorry for her. There's something about her. Everyone sees this specialness in her."
"People are so drawn to her," says Burgon's mother Katie. "Adults, more so. So many people have commented on her charisma or aura."
Let's take care of some business before we proceed. Burgon was born with retinitis pigmentosa, a progressive disorder that eventually leads to blindness and sometimes hearing loss, as well.
She was diagnosed as legally blind at 3 months, and doctors fitted her with tiny glasses. ("She looked like a Cabbage Patch baby," says her mother Katie.) She remembers colors now only as emotions. She lost all of her sight during her fourth and fifth years — about the same time she began to lose her hearing. Over time she needed increasingly stronger hearing aids, which provided limited sound — she could hear if someone talked closely and directly into her right ear and there was no other noise in the room. About 18 months ago, her hearing dropped dramatically to almost nothing.
She prepared for this life of silence and darkness. She began learning both types of Braille at 3 — Grade 1, in which each word is spelled out, and Grade 2, a form of shorthand. Two years ago she began to suspect that a complete hearing loss was inevitable, but decided not to tell her parents until months later. She insisted on studying sign language classes, even when her mother lobbied against it because it was such a difficult challenge. Burgon learned sign language so fast that her teacher told Katie it was too exhausting — he couldn't physically keep up with her and her insatiable appetite for more — so he cut back her class time.
"She was so sad (about losing her hearing)," says Katie. "It was like a death. I would ask her, 'Can you hear me?' and she would make excuses, blaming it on background noise or something like that. She admitted later that she knew it was going and that's why she had wanted to study sign language."
Wait a minute, you're wondering, how can a blind person interpret sign language? She cups her hand softly around the signer's hand as the latter signs, a la Helen Keller. It requires a deft touch, flowing with the movement of the signer's hands and fingers. This is how she "listens" to the sermons in her LDS ward.
"Mom said it would be hard and it was," says Burgon, "but I had a feeling I would need it."
When Burgon was a child, her mother insisted she learn to write, as well. She managed to learn the task before she lost her sight completely, aided by a large magnifying glass that beamed the image on a screen. "It's not pretty but she can do the job," says Katie.
This is a bright, motivated, fearless teen. She earns A's and B's in mainstream high school classes. She scored in the 95th percentile in geometry in a year-end statewide test, taking a Braille-like version of the test.
She runs, hikes, skis, skateboards, sculpts animals from clay, takes the family dog for walks, jumps on a trampoline, rides horses, cooks, helps her mom clean up, even assembles 100-piece puzzles. She tried yoga and judo for a while, once flipping her brother onto his back during a playful moment at home.
"I like the fact that I can do what anyone else can do," she says. "It's a thrill. You have to trust your hands and feet."
One day last year she announced to her mother that auditions for the school play were being held — that day. Kids had been preparing for weeks to sing a solo for the audition. Katie and Burgon showed up just to watch. After the last of the scheduled tryouts was completed, the adviser asked if anyone else wanted to perform. Burgon stood up and made her way down the aisle, with her shocked mother at her side. The only sound in the auditorium, which was filled with about 100 kids, was the tapping of Burgon's cane on the floor.
"What are you doing?" Katie asked her daughter.
"No regrets," said Burgon, who hadn't lost her hearing completely at the time. "Just get me out of here as soon as I'm done."
"What are you going to sing?"
"I'll surprise you."
One of the strict rules of the audition is that clapping is forbidden. When Burgon was finished singing "Anything for You" from "Oliver," she received a standing ovation from parents and peers, many with tears in their eyes.
"Normally, she's off-key, but this time she was on," says Katie. "She sang like an angel. If we had a 10th of her courage … ."
She passed the audition and performed in the play. Classmates led her on and off stage and cued her at the onset of a dance or a song by squeezing her arm or tapping her shoulder. She danced in four dances and never missed a step.
"From the beginning, we thought we were going to be the teacher, but we are the students," says Burgon's father, Bruce. "We're learning from her all the time."
How could a man not be changed for the better who has gently applied mascara to his daughter's unseeing eyes on mornings when his wife must leave early for work?
As fate would have it, Burgon has been gifted with a patient, nurturing family — Bruce, a graphic designer, Katie, a school librarian, and a 21-year-old brother, Garrett, whom Katie calls "the best brother ever."
Some teenage boys might have balked at holding their little sister's hand as they walked with their friends to the bus stop each morning, but not Garrett. His friends drew her into their group and she became everyone's little sister. She was included in so many Boy Scout meetings that she eventually was given her own Scout shirt and Scout nickname (Little Fox).
"In her environment, she's as normal as can be," says Bruce. "She moves around very well, and she's very independent. She takes care of herself. She is fanatical about taking care of her hair, and she can do a lot of her makeup herself."
Burgon spends much of her time with her family. She and her mother like to go to the mall, where Katie scouts out clothes for Burgon, who then runs her deft hands over the clothing, feeling the texture and the style before passing judgment — "No, that's not me." "Those sleeves are weird." "There are too many buttons." "It's too ruffley."
One of Burgon's favorite activities is a simple trip to the grocery store with her father. He turns it into a game, picking food items and asking her to identify them based on smell, shape and texture. "Her sense of smell is off the charts," says Bruce.
During drives in the car, the family provides a narrative of what they are seeing, although, if it's familiar territory, Burgon usually knows where they are.
"Can you imagine how horrible it would be to sit in a car and see nothing?" asks Katie.
Burgon's hands are her eyes. During a recent visit to the LDS Church museum, she ran her hands and fingers over every inch of a large sculpture of a pioneer family pulling a handcart. During visits to a dinosaur museum and a high-end art exhibit, Burgon and Bruce were told to ignore the "Absolutely No Touching" signs — she could touch anything she wanted, which she was only too glad to do.
"That's how she sculpts," says Bruce. "She feels the dimensions and shapes, then it goes in the memory bank and she can reproduce it."
Among her many other interests, Burgon developed a deep love of books as a young child when her parents and maternal grandmother spent long hours reading to her. On a recent Monday, Katie brought home six Braille books from the library and by Thursday Burgon was finished with them.
All that childhood reading produced a side benefit: For lack of a better way to describe it, she doesn't talk like a typical deaf person. During those long reading sessions, she heard the words pronounced correctly over and over and was able to imitate them.
Now she reads with her fingers at about the same speed as most people do with their eyes — books, church magazines, Seventeen magazine. (She complains that the Braille version doesn't include coupons.) It's a remarkable thing to watch, as she runs her right index finger over the words, trailed by the left index finger as backup.
Burgon, who was named after her grandmother's maiden name, is hopeful that she will regain much of her hearing. In January, she underwent cochlear implant surgery in her left ear. Surgeons cut into the side of her head and implanted enough hardware to open a Radio Shack — a microphone, a speech processor, a transmitter and receiver, an electrode array and even a magnet. But it takes a year or more for the brain to remap and learn to interpret sounds. She is just starting to make sense of what she is hearing. The sound of her own flip-flops or birds in the yard have caused her to stop and ask her mom, "What was that?" Recently, she has been able to hear the songs of the Beatles, her favorite group.
Burgon utilizes other technology that enriches her life — a Braille typewriter; a PAC Mate, a small computer that, among other things, converts her Braille input into a readable format for her teachers; a special laptop that displays information from the Internet in Braille and provides oral directions and descriptions to help her navigate the Internet; a VictorStream, an iPod type device that allows her to download books. She also listens to movies specially made for the blind that describe what is happening on screen, in addition to the dialogue.
The machines are her connections to the outside world. Otherwise, she is isolated in many ways. She is popular enough that her peers voted her to the Peer Leadership Team, but she walks through the crowded hallways alone and does little socializing. Her closest friends are blind kids who attend other schools.
"The kids at school are nice," says Brown, "but she doesn't have a close friend. The other kids would say hello, but she can't hear them and so she doesn't say anything in return, so after a while the kids don't even try. … And she knows when she's a project. She just wants to be a regular kid."
Burgon has produced a notebook of her own poetry, which provides an intimate glimpse into her world, especially this one, "Most Painful of All."
Because you ignored me
You never tried to hit me
With the shame of sticks and stones
You never saw me bleeding
You never broke my bones
You never pushed or shoved me,
Or called me hurtful names.
You never saw the tears that fell,
You never saw the pain.
But now I hope you hear me,
For what I have to say,
You never did do any of these things,
But you did look the other way.
Don't look the other way.
"It's hard at school," Katie says. "It's awkward to meet new people. Kids are insecure, and if someone doesn't say hi back to them they take it as rejection, but Burgon doesn't hear them. It's scary for them to walk up to her. They're intimidated by her."
Burgon understands her peers' point of view. "Kids know they'll have to be patient with me, they'll have to commit themselves," she says. "If we hang out together, they know they're going to have to explain things and help me. I don't do things as fast as other kids. They're going to have to show me things by feel." Burgon continues, "One of the hard parts about being blind is that I'm awkward to approach. People don't know how to talk to me … or get my attention. And some kids talk to me like I'm 5."
She visits her school in the summer to practice finding her classrooms, but when school is in session there are inevitable hazards. She has been accidentally bumped, elbowed and hit in the face.
Burgon maintains a sense of humor about her life. She has a T-shirt that reads: "I never forget a face — but for you I'll make an exception." Once she caught her mother asking her where she had placed her keys: "The blind leading the blind," she pronounced. She likes to tell her family, "Beauty is in the mind of the beholder." Another T-shirt: "What you see is what you get."
She has even discovered certain advantages to blindness. Years ago her father caught her reading in the dark under her covers late one night, long after she was supposed to be asleep. Other girls have to stop reading when the lights are turned out, but not Burgon.
"I didn't know you were doing that," Bruce said.
"I've been doing it forever," she confessed.
Someday Burgon wants to be a psychologist for the deaf and blind to help them with their special challenges. She already has begun reaching out to others. She reads Braille for kids at libraries and schools and tutors a blind man with cerebral palsy in math. After some of her presentations to groups, she opens it up for questions about her challenges, but it is sometimes uncomfortable — for the audience.
"The parents are shooshing their kids not to ask questions, but she wants them to," says Katie.
When Katie asked Burgon what was the one thing she wanted communicated in this story, she didn't miss a beat. "The worst thing anyone could do is to pity me or feel sorry for me," she said. "There's nothing to feel sorry for. I'm this way for a reason."
Says Katie, "She never says why me. She knows why she is here."
"I'm used to it," says Burgon. "Some people, when they first go blind or deaf, they're really frustrated and think something's against them. But since I've had it all my life I'm used to it and I'm happy the way I am, and I'm prepared to live that way."
"Who Am I?"
I'm known by most as the "Blind Girl,"
By others "The girl that can't see."
When I walk, I walk with the aid of a cane,
But that's all people really know about me.
You may see me walking unnoticed somewhere
Or maybe just sitting alone
My courage is constantly tested,
And my flame of hope is frequently blown.
You may see me smiling at nothing,
And usually I don't say a word,
But please don't get the wrong impression,
Because this doesn't mean I'm unheard,
I'm willing to speak to those who listen,
I'm willing to listen to those who speak,
I want to help those who stand in the shadows,
I want to give hope to the weak
I was sent here with eyes that couldn't possibly judge
To teach people the meaning of the word sincere
Because in the end, what you see can often deceive you
And things aren't always what they appear,
So now you know my story,
Why I'm called "The Blind Girl."
By others "The girl that can't see"
When I walk, I walk with the aid of a cane
But now you know so much more about me.
— Burgon Jensen
e-mail: drob@desnews.com
© 2009 Deseret News Publishing Company | All rights reserved
Introducing New USDB Superintendent
The following is an article that was posted in the Salt Lake Tribune regarding the new superintendent at USDB. Shortly after Mr. Noyce was named superintendent, I received a personal letter introducing himself and inviting the UPBC to meet with him anytime to discuss concerns and/or give input. Some members of the UPBC had the opportunity to have our first (of what I hope to be many productive meetings) with Mr. Noyce yesterday. One of his goals is that USDB will become the premiere resource for children with sensory impairments throughout the state of Utah. Mr. Noyce, you have a lot of work ahead of you to make this happen. We are behind this goal and support it 100%.
Schools for the Deaf and Blind name Chief
By Lisa Schencker
The Salt Lake Tribune
Updated: 08/07/2009 09:00:46 PM MDT
The Utah Schools for the Deaf and the Blind (USDB) has a new leader.
The Utah State Board of Education on Friday named Steven W. Noyce as USDB superintendent. Noyce most recently served as the executive director of the Tucker-Maxon Oral School in Portland, Ore., and formerly was an education program director at the Utah School for the Deaf, where he supervised both signing and oral programs.
"I am very supportive of families making a choice in what best meets a student's needs in education," he said in a statement. He also said large print and Braille books must be made available for students in a timely manner. Noyce beat out three other finalists for the job.
He will replace Timothy W. Smith, who has been acting superintendent since former superintendent Linda Rutledge retired in July 2007. Parents seeking reforms have long looked forward to the appointment of a new superintendent.
Over the past decade, USDB, which serves 2,200 students, has endured fiscal crises and allegations of mismanagement. Parents sued the school in 2006, accusing a teacher of abusing children, and more recently USDB has seen infighting over educational strategies and limited resources.
Tribune reporter Kirsten Stewart contributed to this story
Schools for the Deaf and Blind name Chief
By Lisa Schencker
The Salt Lake Tribune
Updated: 08/07/2009 09:00:46 PM MDT
The Utah Schools for the Deaf and the Blind (USDB) has a new leader.
The Utah State Board of Education on Friday named Steven W. Noyce as USDB superintendent. Noyce most recently served as the executive director of the Tucker-Maxon Oral School in Portland, Ore., and formerly was an education program director at the Utah School for the Deaf, where he supervised both signing and oral programs.
"I am very supportive of families making a choice in what best meets a student's needs in education," he said in a statement. He also said large print and Braille books must be made available for students in a timely manner. Noyce beat out three other finalists for the job.
He will replace Timothy W. Smith, who has been acting superintendent since former superintendent Linda Rutledge retired in July 2007. Parents seeking reforms have long looked forward to the appointment of a new superintendent.
Over the past decade, USDB, which serves 2,200 students, has endured fiscal crises and allegations of mismanagement. Parents sued the school in 2006, accusing a teacher of abusing children, and more recently USDB has seen infighting over educational strategies and limited resources.
Tribune reporter Kirsten Stewart contributed to this story
Monday, August 31, 2009
Public Service Announcement- Kris Cox
The Executive Director for the Utah Department of Workforce Services says her blindness is one characteristic among many. This public service announcement was created with the help of the Center for Persons with Disabilities at Utah State University. For more information contact JoLynne Lyon at 435-797-1977or Sachin Pavithran at 435-797-6572.
http://www.youtube.com/watch?v=4ZS33i1xQCk
http://www.youtube.com/watch?v=4ZS33i1xQCk
Tuesday, July 28, 2009
Why Are You Trying to Make That Child Blind?
The NFB's National Convention was recently held in Detroit during the first week of July. Some of the highlights of the convention are the family seminars, activities, and network opportunities the National Organization of Parents of Blind Children (NOPBC). The Utah Parents of Blind Children is a division of this organization. Carol Castellano, is the current President of the NOPBC and gave an excellent speech during the general session. I encourage every parent that has a visually impaired child to listen.
You can listen to this speech by going under "Favorite Articles" on the right hand column and clicking the title link.
You can listen to this speech by going under "Favorite Articles" on the right hand column and clicking the title link.
Monday, April 20, 2009
Slate and Stylish
Check this out.
You know someone is web savvy when they have time outside of their full time job and hip social life to network with their 400 friends on facebook and blog on a regular basis.
One of my favorite blogs to visit is Deja Powell's site: http://slateandstylish.blogspot.com She is open, honest, witty, and shares personal stories about her life and blindness.
Deja is a cane travel instructor in Salt Lake City and recently graduated with her MA in Educational Psychology. She received her bachelors from Utah State in Journalism.
On facebook she shares: "I love dancing, my family, chocolate, listening to music, genuine people, football and the smell of paint. I hate ketchup, arrogance, icey roads, cancer, selfishness, sweet potatoes and milk."
Deja, two words. You rock. Keep up the great work! We are lucky to have you back in Utah!!
You know someone is web savvy when they have time outside of their full time job and hip social life to network with their 400 friends on facebook and blog on a regular basis.
One of my favorite blogs to visit is Deja Powell's site: http://slateandstylish.blogspot.com She is open, honest, witty, and shares personal stories about her life and blindness.
Deja is a cane travel instructor in Salt Lake City and recently graduated with her MA in Educational Psychology. She received her bachelors from Utah State in Journalism.
On facebook she shares: "I love dancing, my family, chocolate, listening to music, genuine people, football and the smell of paint. I hate ketchup, arrogance, icey roads, cancer, selfishness, sweet potatoes and milk."
Deja, two words. You rock. Keep up the great work! We are lucky to have you back in Utah!!
Tuesday, March 10, 2009
Science Without Sight is Exciting Camp & Transition to Independence Parent Seminar
It's that time again! The "Science Without Sight Is Exciting" Camp & "Transition to Independence" Parent/Professional Seminar will be here before you know it! Registrations are officially being accepted now! Please visit www.nfbutah.org to register online.
When? Saturday, May 16, 2009. (8:00 a.m.- 4:00 p.m.)
Where? University of Utah Campus. Salt Lake City, Utah
Who’s Invited? Blind and visually impaired students in 4th-12th grade, parents, and professionals.
For Students: “Science without Sight is Exciting” will be a fun and educational experience for Utah's blind and visually impaired students. Each student will be able to explore and experiment in many areas of science, natural history, and engineering.
For Parents & Professionals: Transition To Independence Seminar is an opportunity for parents and professionals to learn about the skills and tools essential for the independence of blind and visually impaired youth.
Keynote speakers include Donna McNear, renowned Teacher of the Visually Impaired and Kristen Cox, Director of Utah Department of Workforce Services and blind mentor.
Lunch: Lunch will be provided for everyone! Please register early!!
Cost: Absolutely Free. There is a $25 deposit per family and professional that will be reimbursed when you check in for the event. The $25 deposit will not be refunded to “no shows.” Please call Marla Palmer at 801-797-9760 if you need help with the $25 fee.
Registration: Early registration deadline is Mar. 31, 2009. Final registration deadline is Apr. 30, 2009. Early Registration: Families or Professionals who register by March 31st will be entered into a drawing for a $100 cash prize. Must be present to win. Registration is limited to 30 students, so early registration is strongly encouraged.
Travel Stipend: The first 10 Utah families to register who are required to travel more than 60 miles (one way) to the U of U and who wish to stay in a hotel Friday evening may be reimbursed for up to $75. To claim the hotel reimbursement, you must present the hotel receipt at the event. It is your own responsibility to make hotel arrangements if you choose this option. If professionals are interested in this stipend, please confirm on the registration form.
Transition to Independence Seminar Keynote Speakers:
Donna McNear is an itinerant teacher of the blind and certified O&M instructor from Minnesota with 30 years experience in the field. Mrs. McNear is a sought-after National and International speaker. She is a frequent consultant to the US Department of Education and to Humanware Corporation, helping them develop assistive technology activities to support Braille literacy. Mrs. McNear was honored in 2007 as the recipient of the Distinguished Educator award for Lifetime of Service from the Council of Exceptional Children- Division of Visual Impairments.
Kristen Cox is the Executive Director for the Utah Department of Workforce Services, appointed by Governor Huntsman. Mrs. Cox served previously as the Maryland Secretary of Disabilities and was the running mate of Maryland governor Robert Ehrlich in the Maryland 2006 gubernatorial election. Mrs. Cox also served as Special Assistant to the Commissioner of Rehabilitation Service in the US Department of Education, where she helped develop national initiatives to promote employment and independence for individuals with disabilities. Blind from a progressive visual impairment at age 11, Mrs. Cox sets a personal example of success and is an inspiration to many blind youth.
Utah Parents of Blind Children thanks the Utah Division of Services for the Blind and Visually Impaired Advisory Council and the National Federation of the Blind of Utah for their generous financial support. We are also grateful to the Department of Biology at the University of Utah for providing space for this event.
If you have any questions, please email Marla Palmer at palmermommy@q.com
When? Saturday, May 16, 2009. (8:00 a.m.- 4:00 p.m.)
Where? University of Utah Campus. Salt Lake City, Utah
Who’s Invited? Blind and visually impaired students in 4th-12th grade, parents, and professionals.
For Students: “Science without Sight is Exciting” will be a fun and educational experience for Utah's blind and visually impaired students. Each student will be able to explore and experiment in many areas of science, natural history, and engineering.
For Parents & Professionals: Transition To Independence Seminar is an opportunity for parents and professionals to learn about the skills and tools essential for the independence of blind and visually impaired youth.
Keynote speakers include Donna McNear, renowned Teacher of the Visually Impaired and Kristen Cox, Director of Utah Department of Workforce Services and blind mentor.
Lunch: Lunch will be provided for everyone! Please register early!!
Cost: Absolutely Free. There is a $25 deposit per family and professional that will be reimbursed when you check in for the event. The $25 deposit will not be refunded to “no shows.” Please call Marla Palmer at 801-797-9760 if you need help with the $25 fee.
Registration: Early registration deadline is Mar. 31, 2009. Final registration deadline is Apr. 30, 2009. Early Registration: Families or Professionals who register by March 31st will be entered into a drawing for a $100 cash prize. Must be present to win. Registration is limited to 30 students, so early registration is strongly encouraged.
Travel Stipend: The first 10 Utah families to register who are required to travel more than 60 miles (one way) to the U of U and who wish to stay in a hotel Friday evening may be reimbursed for up to $75. To claim the hotel reimbursement, you must present the hotel receipt at the event. It is your own responsibility to make hotel arrangements if you choose this option. If professionals are interested in this stipend, please confirm on the registration form.
Transition to Independence Seminar Keynote Speakers:
Donna McNear is an itinerant teacher of the blind and certified O&M instructor from Minnesota with 30 years experience in the field. Mrs. McNear is a sought-after National and International speaker. She is a frequent consultant to the US Department of Education and to Humanware Corporation, helping them develop assistive technology activities to support Braille literacy. Mrs. McNear was honored in 2007 as the recipient of the Distinguished Educator award for Lifetime of Service from the Council of Exceptional Children- Division of Visual Impairments.
Kristen Cox is the Executive Director for the Utah Department of Workforce Services, appointed by Governor Huntsman. Mrs. Cox served previously as the Maryland Secretary of Disabilities and was the running mate of Maryland governor Robert Ehrlich in the Maryland 2006 gubernatorial election. Mrs. Cox also served as Special Assistant to the Commissioner of Rehabilitation Service in the US Department of Education, where she helped develop national initiatives to promote employment and independence for individuals with disabilities. Blind from a progressive visual impairment at age 11, Mrs. Cox sets a personal example of success and is an inspiration to many blind youth.
Utah Parents of Blind Children thanks the Utah Division of Services for the Blind and Visually Impaired Advisory Council and the National Federation of the Blind of Utah for their generous financial support. We are also grateful to the Department of Biology at the University of Utah for providing space for this event.
If you have any questions, please email Marla Palmer at palmermommy@q.com
Tuesday, February 3, 2009
Teen's Blindness Revealing A New World
This past Sunday, the Salt Lake Tribune ran a front page article on Katie Colton. Kuddos to Julia Lyon for writing a nice piece!
http://www.sltrib.com/ci_11604505?IADID=Search-www.sltrib.com-www.sltrib.com
http://166.70.44.68/multimedia/2009/Katie_Colton/index.html
Katie is a delightful teenager with a huge imagination and even bigger heart. We think you are awesome Katie!!
Here's the article:
Teen's blindness revealing a new world Park City teen has a degenerative disease without a cure
By Julia Lyon
The Salt Lake Tribune
Posted: 02/01/2009
Park City » Entranced by the love triangle between a girl, a vampire and a werewolf, Katie Colton held the final book in the "Twilight" series up to her nose last summer, fighting headaches as she raced to the end. When the movie premiered a few months later, she could barely distinguish a fang from a furry face.
Because of the unpredictability of her eye disease, Katie's world was disappearing faster than anyone expected. "We thought we had longer," said Katie's mom, Denise Colton.
In the seven years since they learned of Katie's encroaching blindness, her parents have been determined that her fading vision will not dim her future.
Katie's father, Rick, is an engineer, the kind of guy who assembles toys and repairs broken furniture. "To not be able to fix this bothered me," he said.
To help Katie, he took a job that was both a personal sacrifice and a career opportunity: Every 28 days, he flies across 12 time zones to Tengiz, Kazakhstan, to supervise engineers at a Chevron oil operation, its crown jewel. While he's there, he works six 12-hour days and six hours on Sundays each week.
The job's significantly higher salary makes it possible for Denise Colton to work part-time as a child psychologist and invest more time in helping their daughter. With the help of his abundant frequent flier miles, she's met experts to review Katie's needs. She's battled school officials for better technology, such as a mobile camera that can magnify everything from a worksheet to a frog in biology class. The result is a blind teenage girl who perceives few barriers to her future. Katie, 16, wants to study meteorology at the University of Oklahoma.
"It could boggle your mind," she said, "how much I know about tornadoes."
Make a stand » The first sign that something was wrong came in 2001, when Katie failed a vision exam. Denise and Rick, who both started wearing glasses as young children, assumed there was a simple fix. But the eye doctor couldn't correct the problem.
In February 2002, doctors finally made the diagnosis: Stargardt, a degenerative disease without a cure. Katie, who was 9, remembers crying that night alone in her room.
People with Stargardt see the world as if there was a fist obscuring the center of their vision. Objects to the sides are visible, although not necessarily clear. How large that central spot grows depends on the person.
At first, the Coltons imagined the worst. "What scares us the most is the unemployment rate," Denise Colton said. "We don't want our kid on welfare."
About 70 percent of blind people are unemployed, according to the National Federation of the Blind. In the years after Katie's diagnosis, the Utah Schools for the Deaf and the Blind disagreed with the Coltons on how much emphasis should be placed on Katie learning Braille while she could still read text, the parents said. Eventually, the family took out a second mortgage on their home to help pay for lawyers.
"We'd had to argue a wait-to-fail model is not appropriate for a progressive disorder," said Denise Colton, who previously worked for the Park City School District as a school psychologist. She has seen her daughter's services greatly improve since Katie's diagnosis seven years ago. "I believed it was important to make a stand not just for our child but other children who did not have the resources we did."
The Braille debate » Years passed before adequate time and technology were invested in Braille instruction for Katie, Denise Colton said. Those lost years mean her fingers need to move faster every day; most blind Americans who work use Braille.
Kristen Cox, perhaps the most prominent role model for blind Utahns, believes there needs to be a philosophical switch in schools in regard to Braille.
Today, Cox is the head of the state Department of Workforce Services. Diagnosed with Stargardt at 11, she struggled to read print by her final years of high school. In college, she had "readers" to verbalize her textbooks and memorized ideas during lectures, rather than taking notes. She did not start learning Braille until age 26, after the birth of her first child, because she wanted to be able to read stories to her children.
"I wish that I had learned it when I was young," she said. "There's kind of this thinking out there which is if you have some vision, you use that vision."
As Katie's vision deteriorated, her family attended National Federation of the Blind conferences, discovering a network of blind Americans with professional careers and adaptive technology. They also saw the other extreme: blind people dependent on the government.
The family learned that computers and cell phones can be made to speak. Books and blackboards can be supermagnified with a variety of tools. At Park City High School, Katie has used a magnifier to supersize her textbooks.
Still, as the potential for massive budget cuts loom in Utah, the Coltons are one of many worried families with children in special-education programs. A Braille geometry book Katie needed in January cost the district $3,400. Advocates fear that decreased funding could lead to inequities and incomplete services.
"I know my rights," said Marla Palmer, who is president of Utah Parents of Blind Children. "So my concern is for parents who aren't as educated or who aren't as aware of specific laws."
Members of the Utah chapter of the National Federation of the Blind will meet with Gov. Jon Huntsman Jr. on Monday to share their concerns about the performance of the Utah Schools for the Deaf and the Blind.
But the school defends its work. "If you look at the children we have compared to their disability and [learning] goals, we are exceptional," said Kimberley Smale, a school spokeswoman.
Internal vision grows » Over the years, Katie's parents' faces have grown less distinct and are now almost unrecognizable to her.
Reading text messages on a cell phone requires a magnifier. The big yellow flashing lights are the key to finding the morning school bus. And the computer, even with a supermagnifying tool, is almost impossible to read.
Katie's favorite tree at the Festival of Trees a few weeks ago was decorated with white starfish and shimmering aqua, lime-green and rust-orange bulbs.
"Everything from that white branch and up is gone," the teen said, referring to most of the tree. "It's just like a cloud of color. It's always mainly purple."
Katie volunteered that night with her mentor, Cheralyn Creer, a blind woman who is a former blindness specialist at the state Office of Education. Until Katie met Creer, three years after her diagnosis, Katie believed no one else in the world was like her.
"If you're not around blind people," Creer said. "… you don't see what other people are accomplishing and you kind of give into society's misconceptions of what blindness means: that it's a pitiful situation."
Today, Katie is optimistic. "For me it takes up too much energy to be sad," the teen said. "I look at everything as a challenge or something interesting I can accomplish."
Now her world is irrevocably shifting as she moves from being a visual learner to being a tactual one. Last fall, Katie practiced reading Braille aloud at school, sounding like a younger child, pausing between words. As her fingertips brushed forward, she kept improving, cutting a minute off her time with each attempt.
Katie recently told Creer that her vision loss has brought blessings: The less she can see, the stronger her internal vision grows. She knows how it looks when a vampire rescues a girl -- even when she can't see the movie screen.
"My imagination," Katie said. "It helps me stay happy."
http://www.sltrib.com/ci_11604505?IADID=Search-www.sltrib.com-www.sltrib.com
http://166.70.44.68/multimedia/2009/Katie_Colton/index.html
Katie is a delightful teenager with a huge imagination and even bigger heart. We think you are awesome Katie!!
Here's the article:
Teen's blindness revealing a new world Park City teen has a degenerative disease without a cure
By Julia Lyon
The Salt Lake Tribune
Posted: 02/01/2009
Park City » Entranced by the love triangle between a girl, a vampire and a werewolf, Katie Colton held the final book in the "Twilight" series up to her nose last summer, fighting headaches as she raced to the end. When the movie premiered a few months later, she could barely distinguish a fang from a furry face.
Because of the unpredictability of her eye disease, Katie's world was disappearing faster than anyone expected. "We thought we had longer," said Katie's mom, Denise Colton.
In the seven years since they learned of Katie's encroaching blindness, her parents have been determined that her fading vision will not dim her future.
Katie's father, Rick, is an engineer, the kind of guy who assembles toys and repairs broken furniture. "To not be able to fix this bothered me," he said.
To help Katie, he took a job that was both a personal sacrifice and a career opportunity: Every 28 days, he flies across 12 time zones to Tengiz, Kazakhstan, to supervise engineers at a Chevron oil operation, its crown jewel. While he's there, he works six 12-hour days and six hours on Sundays each week.
The job's significantly higher salary makes it possible for Denise Colton to work part-time as a child psychologist and invest more time in helping their daughter. With the help of his abundant frequent flier miles, she's met experts to review Katie's needs. She's battled school officials for better technology, such as a mobile camera that can magnify everything from a worksheet to a frog in biology class. The result is a blind teenage girl who perceives few barriers to her future. Katie, 16, wants to study meteorology at the University of Oklahoma.
"It could boggle your mind," she said, "how much I know about tornadoes."
Make a stand » The first sign that something was wrong came in 2001, when Katie failed a vision exam. Denise and Rick, who both started wearing glasses as young children, assumed there was a simple fix. But the eye doctor couldn't correct the problem.
In February 2002, doctors finally made the diagnosis: Stargardt, a degenerative disease without a cure. Katie, who was 9, remembers crying that night alone in her room.
People with Stargardt see the world as if there was a fist obscuring the center of their vision. Objects to the sides are visible, although not necessarily clear. How large that central spot grows depends on the person.
At first, the Coltons imagined the worst. "What scares us the most is the unemployment rate," Denise Colton said. "We don't want our kid on welfare."
About 70 percent of blind people are unemployed, according to the National Federation of the Blind. In the years after Katie's diagnosis, the Utah Schools for the Deaf and the Blind disagreed with the Coltons on how much emphasis should be placed on Katie learning Braille while she could still read text, the parents said. Eventually, the family took out a second mortgage on their home to help pay for lawyers.
"We'd had to argue a wait-to-fail model is not appropriate for a progressive disorder," said Denise Colton, who previously worked for the Park City School District as a school psychologist. She has seen her daughter's services greatly improve since Katie's diagnosis seven years ago. "I believed it was important to make a stand not just for our child but other children who did not have the resources we did."
The Braille debate » Years passed before adequate time and technology were invested in Braille instruction for Katie, Denise Colton said. Those lost years mean her fingers need to move faster every day; most blind Americans who work use Braille.
Kristen Cox, perhaps the most prominent role model for blind Utahns, believes there needs to be a philosophical switch in schools in regard to Braille.
Today, Cox is the head of the state Department of Workforce Services. Diagnosed with Stargardt at 11, she struggled to read print by her final years of high school. In college, she had "readers" to verbalize her textbooks and memorized ideas during lectures, rather than taking notes. She did not start learning Braille until age 26, after the birth of her first child, because she wanted to be able to read stories to her children.
"I wish that I had learned it when I was young," she said. "There's kind of this thinking out there which is if you have some vision, you use that vision."
As Katie's vision deteriorated, her family attended National Federation of the Blind conferences, discovering a network of blind Americans with professional careers and adaptive technology. They also saw the other extreme: blind people dependent on the government.
The family learned that computers and cell phones can be made to speak. Books and blackboards can be supermagnified with a variety of tools. At Park City High School, Katie has used a magnifier to supersize her textbooks.
Still, as the potential for massive budget cuts loom in Utah, the Coltons are one of many worried families with children in special-education programs. A Braille geometry book Katie needed in January cost the district $3,400. Advocates fear that decreased funding could lead to inequities and incomplete services.
"I know my rights," said Marla Palmer, who is president of Utah Parents of Blind Children. "So my concern is for parents who aren't as educated or who aren't as aware of specific laws."
Members of the Utah chapter of the National Federation of the Blind will meet with Gov. Jon Huntsman Jr. on Monday to share their concerns about the performance of the Utah Schools for the Deaf and the Blind.
But the school defends its work. "If you look at the children we have compared to their disability and [learning] goals, we are exceptional," said Kimberley Smale, a school spokeswoman.
Internal vision grows » Over the years, Katie's parents' faces have grown less distinct and are now almost unrecognizable to her.
Reading text messages on a cell phone requires a magnifier. The big yellow flashing lights are the key to finding the morning school bus. And the computer, even with a supermagnifying tool, is almost impossible to read.
Katie's favorite tree at the Festival of Trees a few weeks ago was decorated with white starfish and shimmering aqua, lime-green and rust-orange bulbs.
"Everything from that white branch and up is gone," the teen said, referring to most of the tree. "It's just like a cloud of color. It's always mainly purple."
Katie volunteered that night with her mentor, Cheralyn Creer, a blind woman who is a former blindness specialist at the state Office of Education. Until Katie met Creer, three years after her diagnosis, Katie believed no one else in the world was like her.
"If you're not around blind people," Creer said. "… you don't see what other people are accomplishing and you kind of give into society's misconceptions of what blindness means: that it's a pitiful situation."
Today, Katie is optimistic. "For me it takes up too much energy to be sad," the teen said. "I look at everything as a challenge or something interesting I can accomplish."
Now her world is irrevocably shifting as she moves from being a visual learner to being a tactual one. Last fall, Katie practiced reading Braille aloud at school, sounding like a younger child, pausing between words. As her fingertips brushed forward, she kept improving, cutting a minute off her time with each attempt.
Katie recently told Creer that her vision loss has brought blessings: The less she can see, the stronger her internal vision grows. She knows how it looks when a vampire rescues a girl -- even when she can't see the movie screen.
"My imagination," Katie said. "It helps me stay happy."
Monday, February 2, 2009
Utah Parents of Blind Children Vice President
Dr. Denise Colton, is currently the Vice President of the Utah Parents of Blind Children and board member of the National Organization of Parents of Blind Children.
Dr. Colton is a licensed psychologist who specializes in the psycho educational evaluation and treatment of children and adolescents. She currently maintains a private practice with the Park City Learning and Behavior Clinic. Word is quickly spreading that Denise is a huge asset for blind and visually impaired children throughout Utah. She has given countless hours partnering with parents and teachers to support success in the school setting. Dr. Colton is a former elementary teacher, educational researcher, school psychologist and student service school administrator and has more than 25 years of work experience in public and private schools.
Dr. Colton is a licensed psychologist who specializes in the psycho educational evaluation and treatment of children and adolescents. She currently maintains a private practice with the Park City Learning and Behavior Clinic. Word is quickly spreading that Denise is a huge asset for blind and visually impaired children throughout Utah. She has given countless hours partnering with parents and teachers to support success in the school setting. Dr. Colton is a former elementary teacher, educational researcher, school psychologist and student service school administrator and has more than 25 years of work experience in public and private schools.
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