Utah Parents of Blind and Visually Impaired Children

Summer Bookshare Info

2011-05-23T16:51:00.000-07:00

Here is a great opportunity to keep up on reading during the summer.

Enjoy!

http://blog.bookshare.org/2011/05/11/announcing-the-bookshare-everywhere-summer-contest/

Win an iPad 2 in the “Bookshare Everywhere” Summer Contest!

May 11, 2011

tags: contest, summer contest

by Mario Oliveros

Tell us all the ways Bookshare made your summer fun!

One of the best things about Bookshare is that you can take it anywhere you want. Whether you go on vacation, hang out at a local park, or curl up on a comfy chair at home, you can enjoy Bookshare books wherever you want.

This summer, don’t just have fun reading with Bookshare, enter the summer contest and you might win some totally awesome prizes, like an Apple iPad 2!

Who can play:

Contestants must be U.S. Individual Members of Bookshare in grades K-12 and college. Don’t have an individual membership? Parents or students 18 years old and above can sign up today; use promo code: contest! Teachers, got students you want to help provide Individual Memberships? Watch this 4-minute tutorial!

How to play:

Enter the contest by completing the Contest Entry Form and guess how many books will be read during the contest.
From June 1 to August 19, 2011, download and read as many Bookshare books as you can.
After reading a book, tell us how the book made your summer fun on the Book Entry Form (LIVE JUNE 1st). Submit as many book entries as you want to increase your chances of winning!

How to win:

GRAND PRIZE: Apple iPad 2

Guess how many Bookshare books will be read by the end of the contest! The contestant who comes closest to the total number of downloaded books, without going over, will win a brand new iPad 2! (The winner must download and read at least one Bookshare book this summer.) Last year, hundreds and hundreds of books were downloaded and read. How many books will there be this year???

ADDITIONAL PRIZES: 4 Read2Go iOS apps, 1 HumanWare Victor Reader Stream, 1 HumanWare ClassMate Reader and 6 SanDisk MP3 players!

Bookshare judges will review all submissions and select winners based upon the following categories*:

Participants who download and read the most books this summer
Participants who had the most fun this summer (be creative in writing your submissions!)
Participants who read Bookshare books in the most interesting places

*Winners will be selected in each of the following grade sections: K-5, 6-8, 9-12, college

Blind How/Project Strive

2011-05-23T16:21:00.000-07:00

The NFB of Utah and Project STRIVE have launched a website that we are beta testing. Come test drive. Sign up. Upload videos, audio, articles. Comment, add to favorites and send us any glitch you find :) www.strive.ws (Beta site). In future will be www.blindhow.com

BlindHow

www.strive.ws

We allow any member of the site to submit articles, questions, and tutorials.

Underconstruction/Updating

2011-05-16T10:08:00.001-07:00

Welcome to the Utah Parents of Blind/Visually Impaired Children's blog. Please pardon us while we are updating the board member and advisory panel's information.

2011 BELL Summer Program

2010-03-27T13:34:00.001-07:00

The National Federation of the Blind of Utah in collaboration with the Utah Parents of Blind Children and Utah School for the Blind is pleased to announce:

Utah BELL (Braille Enrichment Literary and Learning) Summer Program

When: June 13-24, 2011 (Monday-Friday)

Time: 9:00 a.m- 3:00 p.m

Where: USDB Salt Lake Campus (Libby Edwards School), 1655 3300 South

Cost: $50 for both weeks.

Description: The goal of the program is to provide children ages 4-12 with 2 weeks of beginning Braille instruction through fun, hands on learning and activities. In addition to crafts, games, and other engaging projects students will also enjoy field trips to sites relates to the BELL curriculum. This program is limited to a maximum of 10 students.

Wendy Bybee and Annette Newbold are the Program Coordinators and will be working 2 certified teachers of the visually impaired throughout the week. For more information please contact Wendy (wendy@thebybees.net) or Annette (annetten@usdb.org)

To view a video of last year's BELL program click here

Louis Braille Carnival

2010-02-09T10:54:00.000-08:00

On Saturday, February 6, 2010 the UPBC held their first Louis Braille Carnival!

Thank you to the 20+ blind mentors and role models who networked with families and ran the carnival games (Bingo, Fishing, Cake Walk, Tactile Twister, Fortune Telling, Toddler & Game Rooms)! Thank you to the 40+ families (100+ children) who came with their children to spend an afternoon with us! Thank you to Bill Gibson and his positive staff at DSBVI for the wonderful accomodations! Thank you to Sharon from Changing Faces http://www.changingfacesut.com/ for your time, talent, and discount! Thank you to Marcus at A lot of Fun Stuff http://www.alotoffunstuff.com/ for the discount and setting up and taking down the popular bounce houses! Finally, thank you to our supportive families for coming early to set up and staying late to clean up!

Braille is beautiful and can be fun too!
Utah Parents of Blind Children Board

Opportunities Galore

2009-11-30T22:16:00.001-08:00

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.

Seeing Burgon: Blind, deaf teen lives her life to the fullest

2009-09-24T10:49:00.000-07:00

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

2009-09-24T10:23:00.000-07:00

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

Public Service Announcement- Kris Cox

2009-08-31T11:45:00.000-07:00

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

Why Are You Trying to Make That Child Blind?

2009-07-28T22:07:00.000-07:00

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.

Slate and Stylish

2009-04-20T22:45:00.000-07:00

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!!

Science Without Sight is Exciting Camp & Transition to Independence Parent Seminar

2009-03-10T12:21:00.001-07:00

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

Teen's Blindness Revealing A New World

2009-02-03T00:05:00.000-08:00

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."

Utah Parents of Blind Children Vice President

2009-02-02T23:09:00.000-08:00

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.

Equal Expectations: A Belief Paradigm or a Politically Correct, Feel-Good Phrase?

2008-09-18T21:17:00.000-07:00

Do you receive the magazine, "Future Reflections?" If not, email me immediately I will get you signed up (it's free). It's a magazine published quarterly by the National Organization of Parents of Blind Children. I was reminded of an article that I thought captured how I felt about the high expectations we as parents, teachers, friends, and family should be holding our children to.

The Article entitled, "Equal Expectations: A Belief Pardigm or a Political Correct, Feel-Good Phrase" was given by Dr. Eric Vasiliauskas, M.D. (“Dr. V”) at the California Teachers and Educators of the Visually Handicapped Conference in 2007.

http://www.nfb.org/images/nfb/Publications/fr/fr27/1/fr270107.htm

There has been some recent discussion in regards to the Utah School for the Blind and the services they provide blind/vi children throughout the state. We benefit from these services because my children attend a charter school. I have had the opportunity to share my view in public forums and strongly feel there needs to be some systemic accountability. There is always room for improvement and there are obvious gaps and loopholes that need to be acknowledged and accepted and then a plan of action to resolve.

One area of low expectations can be found in the level or literacy. I have cut and pasted a portion of Dr. V's article and encourage you to read the article in it's entirety.

Dr V. says:

Do you expect of your Braille-reading students? Do you expect your Braille readers to read faster than, at the same rate as, or slower than their print-reading classmates? Let me share with you one first grader’s perspective. One day when I was with Vejas in his first grade Lithuanian classroom, he, in his usual form, finished his assignment before anyone else. I leaned over to let him know this and he whispered back to me, “Of course Dad, that’s because I have the advantage--Braille is faster.” I am proud to share with you that Vejas was formally recognized as the best student and most fluent reader and writer in his Lithuanian school class that year.

California is the first state to adopt formal Braille Reading Standards and Braille Math Standards . These standards have already served our family in very real and practical ways. However, while this is a definite step (or perhaps more appropriately--leap) in the right direction, unfortunately these standards do not include standards for reading fluency.

Let’s examine reading rate guideline data from the US Department of Education Web site that present the numbers of words per minute at which children read silently and orally during the elementary school years www.ed.gov/teachers/how/tools/initiative/summerworkshop/mccabe/edlite-slide019.html and middle school years www.ed.gov/teachers/how/tools/initiative/summerworkshop/mccabe/edlite-slide020.html:

Grade 2 (70-100 WPM silent); (66-104 oral) Grade 3 (95-130 WPM silent); (86-124 oral)
Grade 4 (120-170 WPM silent); (95-130 oral)
Grade 5 (160-210 WPM silent; (108-140 oral)
Grade 6(180-230 WPM silent; (112-145 oral)
Grade 7 (180-240 WPM silent; (122-155oral)

Do you expect your Braille readers to be reading at the pace suggested in these guidelines? By the end of sixth grade, are your Braille students reading 180-230 words per minute? Are your third graders reading 95-130 words per minute? These numbers may seem a little high, so let’s look at the reading fluency benchmarks that our school district (Manhattan Unified School District) uses:

District Benchmark(wpm with 95% accuracy)
Grade 1- 60WPM
Grade 2- 115 WPM
Grade 3- 130 WPM
Grade 4- 135 WPM
Grade 5- 150 WPM

The third grade benchmark is 130 words per minute with 95 percent accuracy.

Some of you may be thinking, “Dr. V, that is wishful thinking,” because your experiences have taught you that the blind adults, teens, and children you work with do not read that fast. Some might direct me to the NLS Factsheet, www.loc.gov/nls/reference/factsheets/braille.html, which states that the average reading speed of blind individuals is about 125 words per minute. To put this into perspective, based on the data from the US Department of Education Web site, that is about the average speed that a typical sighted third or fourth grade child reads print. But it is likely that the Braille reading speeds are based on a mixed bag of individuals, many of whom started reading Braille later in life as teens or as adults.

Some of you would likely to point me to these standards which have been posted on both the California Department of Education's Braille-n-Teach listserv http://csmt.cde.ca.gov/helpFAQ.aspx and on AERNet, the Association for Education and Rehabilitation of the Blind and Visually Impaired’s e-mail discussion listserv: http://lists.aerbvi.org/pipermail/aernet_lists.aerbvi.org, numbers which are actually being used by VI professionals around the country.

Grade Level Reading Rate-Texas School for the Blind and Visually Impaired (TSBVI) Assessment Kit

Grade 3- 51 WPM
Grade 4- 58 WPM
Grade 5- 66 WPM
Grade 6- 67 WPM
College- 115 WPM

Michigan Scale
Grade 3- 30 WPM
Grade 6- 60 WPM
Grade 9- 90 WPM
High School Graduate- 120 WPM

At the third grade level, in stark contrast to the 95-130 words per minute proposed by the guidelines on the US Department of Education Web site, or the 130 words per minute benchmark set by our school district, the Texas School for the Blind and Visually Impaired (TSBVI) Assessment Kit reportedly suggests that 51 words per minute is acceptable and even more shocking is the 30 words per minute benchmark put forth as adequate by the Michigan scale.

By the end of third grade Vejas was clocked at an oral reading speed of 182 words per minute with 100 percent accuracy. I only recently explained to Vejas that there are educators who believe that Braille is a slower reading medium than print. With utter disbelief, Vejas replied with, “But that’s ridiculous!”...

What about your low-vision, large-print readers? Are they keeping pace with, or out-pacing, their sighted peers? How does their reading proficiency compare to their age-matched sighted classmates or the Braille-reading NFB Braille Readers Are Leaders contest participants we just looked at? Are your large-print readers struggling to keep up with schoolwork? How many are avid readers? How many actually enjoy reading for fun? If they must read, do they prefer to listen to books on tape? Are they, too, participating in reading contests? By high school, are they able to read hundreds of pages per week?

Are your Braille students keeping pace with their classmates when it comes to taking notes in class and completing their assignments? What about your large-print readers? How efficiently can they take handwritten notes in class? Are they as fast as their sighted peers? How legible are their notes when they need to review the information? Can they efficiently read their own notes without having to lug a CCTV everywhere?

In children with residual vision, Braille is not encouraged as much as it could or should be. I was heartbroken by a question posed to me by a girl in middle school who came to a workshop I was giving last year on Braille resources. She sat down in the front row and before I formally started, she raised her hand and asked me, “How do I convince my teachers to teach me Braille?”

She went on to elaborate. “I have some vision and my teachers make me use large print, but I can only see a few words at time on a computer screen. I just can’t keep up with my schoolwork and homework. I can’t even read my own notes without a magnifying device. I just don’t know what to do. I know I should learn Braille, but my teachers are unwilling to teach me. What can I do?”

Unfortunately this story is neither unique nor that uncommon. I have heard such stories many a time, including at this and prior CTEVH conferences. Just because a child can read enlarged print does not mean that that is the best primary learning mode for that student. The irony is that children who have some residual sight are frequently at a disadvantage because they often can’t keep up with their peers and may ultimately be less likely to be passionate about reading. Furthermore, it is important to remember that many conditions (even in children) are associated with progressive loss of vision over time, in some cases due to the underlying eye condition, in others from retinal detachment or glaucoma.

Do educators have equal expectations of blind children? If educators truly believe in “equal expectations,” then why is it that nationally only 45 percent of blind or severely visually impaired, but otherwise capable, students graduate from high school, compared to 80 percent of their sighted counterparts? (Data from the American Foundation for the Blind [AFB] Web site: www.afb.org/section.asp?SectionID=15&DocumentID=1367) Why do only 16 percent of those blind or severely visually impaired students that graduate high school then go on to earn a college degree? Now granted one doesn’t need a high school diploma or college diploma to a get a job, but everyone should agree that advanced education certainly broadens one’s options.

Some may feel I am overreacting and claim that local outcomes are better. How many of the Braille readers and large-print readers in your school system graduate from high school and from college? How many have gone on to pursue postgraduate studies, including law school, medical school, or PhDs? How does the performance of Braille-reading students and large-print reading students in California compare to the rest of the children taking the California state STAR exam? Where is the actual data? Who collects it? How accurate is it? I am under the impression that such education attainment statistics are not well tracked. Where is the accountability? California state testing results are broken down by economic status, gender, ethnicity, and the broad category of disabilities. The state testing agency knows which students get Braille or large print exams. Why are the performance results of blind and visually impaired children therefore not examined and made available? Without accurate and current local district, SELPA, or state-based statistics, how can parents be asked to “back off” and to put their full trust in “the system”? Employment status is a reasonable alternate measure of the fruits of the current educational system. According to the AFB Web site, www.afb.org/section.asp?SectionID=15&DocumentID=1367, less than half of low vision adults and only about a third of legally blind adults are employed, and of that third, 93 percent of the employed blind read and write Braille; only 7 percent don’t. We must also take into account that these statistics focus only on employment status, that is, employed versus unemployed, not on the type of job one is able to hold. As a parent who wants the best for his blind children, I find these statistics sobering. We must all critically examine the educational system performance hard data, the educational report cards so to speak. The data suggests that at the schooling level there is a huge discrepancy between the accomplishments of sighted and blind children. From a parent’s standpoint, I must interject that this report card of the current status of affairs is also not at all encouraging and is certainly not reassuring.

Are Your Children's Books On Time?

2008-08-19T11:31:00.000-07:00

We are approaching an exciting time of the year-- a new school year! Whatever grade your child is entering, whatever transitions they are making--it's vital that we as parents are advocating a and ensuring their needs will be met. You ask, isn't that what an IEP is for? Technically yes. But what about reality? What can you do at the beginning of the year?

The biggest and most recent complaint I have heard from parents is that their child's Braille and/or large print books are not available the first day of class or the same time as their sighted peers. This is of great concern to me on many levels. What message is it sending our kids? Is it limiting a child's ability to learn? Are they lagging behind academically due to this error?

What is the law?
There are protections in the law to prevent this situation. The Individuals with Disabilities Education Improvement Act of 2004 (IDEIA 2004), the most recent reauthorization of IDEA, reads:
… To ensure that children with disabilities who need instructional materials in accessible formats are provided those materials in a timely manner, the SEA must ensure that all public agencies take all reasonable steps to provide instructional materials in accessible formats to children with disabilities who need those instructional materials at the same time as other children receive instructional materials.

I urge parents to make a visit to their child's school to see if their books are available. If they are not, we would like to hear about it.

What are other things you can do to advocate?

Review your child's IEP goals. Be knowledgable about the goals, objectives, and service times. This will empower you, so you can feel comfortable talking to their teacher, TVI, O&M instructor, or special education director about how these will be implemented throughout the year. This might include discussing what days and times they will be pulling your child out of the classroom. Is it during Math? Reading? PE? Are they coming the times listed on the IEP? Some IEPS will list clump service time into one total rather than stating how many days of the week. If your child needs daily instruction, be specific.

Make sure your child's TVI is providing progress notes. This will help you know if they are making progress towards their IEP goals.

Talk to your child's teacher if there are any special accomodations (seating, written materials, testing, enlarged or Brailled worksheets, extended time, etc..) You might be surprised how many accomodations get overlooked because of the tremendous load teachers carry.

If you are able, offer to help your child's teacher in any way. This may be making extra large copies, coming in to adapt a Science experiment, educating the class about blindness.

Print, Braille, or Both??

2008-08-15T09:59:00.000-07:00

In a landmark study by Dr. Ruby Ryles, she found that children who grew up reading Braille had a 44 percent unemployment rate as adults compared to a 77 percent unemployment rate among low-vision children reading print. Research Study: Early Braille Education Vital, (Ryles, R.) Future Reflections, Special Issue, 2004. http://nfb.org/legacy/fr/fr14/fr04se22.htm
Staggering statistics confirm this trend continues year after year. In 2007, there were 57, 696 legally blind students registered, and 10% (5,626) were registered as Braille readers. http://www.aph.org/about/ar2007.pdf

While only 10 percent of blind people read Braille, as many as 90 percent of employed blind people are Braille readers. According to the Louis Braille Bicentennial–Braille Literacy Commemorative Coin Act, P.L. 109-257 (109th Congress), “Braille literacy aids the blind in taking responsible and self-sufficient roles in society, such as employment: while 70 percent of the blind are unemployed, 85 percent of the employed blind are Braille-literate.”

So, why all the statistics? The hub-bub? Does your child need Braille? Print? or Both?

Let's start with the law. iii) In the case of a child who is blind or visually impaired, provide for instruction in Braille and the use of Braille unless the IEP Team determines, after an evaluation of the child's reading and writing skills, needs, and appropriate reading and writing media (including an evaluation of the child's future needs for instruction in Braille or the use of Braille), that instruction in Braille or the use of Braille is not appropriate for the child;
Section 300.324(2)(iii) Development, review, and revision of IEP.(2) Consideration of special factors.

What does this mean? If you have a blind or visually impaired child, they should be provide Braille instruction UNLESS there is a thorough evaluation (not a statement or opinion) is in their file proving it is not appropriate.

Some blind/vi children are given an introduction to Braille. This is not instruction.
Some blind/vi children are told, "let's wait and see" what happens. This is not looking at the future needs of a child.

Some blind/vi children can read enlarged print--but their eyes tire after 30 minutes of reading. Do you know your child's print and Braille reading fluency?

Some blind/children can read enlarged print, but their nose is often "inked" from reading so close. Braille is a tool that can be used when giving presentations or public speaking, rather than having to memorize or seeing a paper in front of the presenters face.

Assessment of reading and writing needs should carefully consider how a student will function in upcoming years as print size diminishes and reading demands increase. The appropriate reading and writing media must provide for effective personal communication and full participation in community, vocational, and social settings
http://www.nfb.org/images/nfb/Publications/fr/fr18/Issue1/f180104.htm

I would love to hear your opinions? Is your child successfully learning Print, Braille or Both? If you are an adult- are you successfully reading Print, Braille or Both? Is it working?

Look Who Is In the News!

2008-07-28T23:42:00.000-07:00

Caroline Blair and her parents were recently interviewed by the Deseret News and an article was published this week. On June 28th, Caroline competed in the National Braille Challenge held in Los Angeles. She was the only representative from Utah! Caroline's mom, Pat Renfranz is the Secretary of the Utah Parents of Blind Children. You can find the article online at:
http://www.deseretnews.com/article/1,5143,700246554,00.html

2008-07-19T22:13:00.000-07:00

Welcome to the Utah Parents of Blind Children

We want to know more about your and your family. We are particularly interested in your experiences with the education of your blind or visually impaired child in Utah, and are seeking to address concerns in this area. Please list any specific concerns you have related to your child’s education. We are also very interested in hearing about positive elements that have supported your child’s educational success.

Please cut and paste this survey in word format, complete, save and send to palmermommy@comcast.net

I am looking forward to hearing from you soon!

Marla Palmer
President, Utah Parents of Blind Children of Utah

*********************************************************************************

Utah Parents of Blind Children
Family/Child Needs Survey

Parent Name (s)/Address/Phone/E-mail:

____________________________________________________________________________________________________________________________________________________________
Child(ren) Name (s)/Age/Grade/Type and Degree of Vision Loss

____________________________________________________________________________________________________________________________________________________________

My child is educated in (check one)

___ our local public school

___ a private school

___ home schooled

___ USDB

___ other (please specify):___________________________

My child has (check one)

___ An IEP

___ an IFSP

___ a 504 plan

___ Not Sure

___ No individualized plan

My child reads (check all that apply)

___ regular print

___ large print

___ Braille

___ does not read

What’s Working Well?

Please rate the statements as follows: 1= working well; 2= working ok; 3= moderate problem; 4=serious problem or NA=not applicable

RATING

____ My child receives the educational support services he/she needs to attain and maintain age and grade appropriate skills.

____ My child reads well in print, Braille, or both.

____ My child receives travel training (O & M) that allows him/her to travel safely and efficiently in home, school, and community.

____ I have good knowledge of the wide varieties of assistive technology available to assist my visually impaired/blind child with school work.

____ My child has access at home and at school to a variety of assistive technology devices to aide learning.

____ My child’s Braille or large print textbooks are provided at the same time as the rest of the class.

____ My child has received good individualized evaluations that have helped develop good educational support plans.

____ My child has additional disabilities that have been identified and are being addressed in a good educational support plan.

Parent/Child/Family Interests
Please rate the statements as follows: 1= strong interest; 2= moderate interest; 3= mild interest; 4= no interest

RATING
____ I would like opportunities for social activities with other UPOBC families.

____ I would like to have more opportunities for my child and family to meet and interact with blind adults.

____ I would like more opportunities for social and recreational activities for my child.

____ I would like more opportunities for educational and life skills development activities for my child.

____ I would like to receive written materials on child development and education issues.

____ I am interested in college scholarship opportunities for my child.

____ I would like more parent training opportunities.

____ I would like a parent advocate to discuss my child’s educational program with me and possibly attend school meetings such as IEP.

Utah Parents of Blind Children typically honors an educator in Utah on an annual basis for outstanding service to blind and visually impaired students. Do you know someone we should consider? Yes No

If yes, who:________________________________

May we include you on our mailing list? Yes No

Feel free to add any additional statements, information, or suggestions survey that will help us better understand the needs of your blind/visually impaired child and related family issues.

Comments:

How Can I Prepare for My Child's IEP? Top 3

2008-02-09T14:43:00.001-08:00

I have been very fortunate the past 8 years to have worked with very open minded, team spirited, professionals on my children's IEP. It is not uncommon when I receive a telephone call from a parent who is asking for advice on how to prepare for an IEP. If the need is there, then I have attended an IEP as a parent advocate. Unfortunately, my eyes have been opened and realize the fact that all IEPs are not created equal. I have witnessed IEPs where a parent doesn't speak a word, have seen a lack of cooperation and power struggle between team members, the strong presence and intimidation of politics, and the low expectations.

I don't claim to be an expert when it comes to IEPs, but I have lost track on how many I have attended. I think experience is a great teacher, and I continue to learn. Any comments or advice on this post is welcomed. Today I will mention my top three...

1. The Utah Parent Center (www.utahparentcenter.org) was the first parent resource group whom I turned to when my daughter was transitioning from PIP services to preschool. They have a wonderful handbook entitled, "The Parents As Partners in the IEP Process". This simple handbook is designed to ask questions so you as a parent can create a thorough child profile. After answering the questions (strengths and weaknesses), then it's simple to type up a summary which you can hand out when discussing your child's current level of performance and goals. I have always include a picture of my child on their profile, so it helps us remember who we are focusing on.

2. Bring your spouse, friend, parent advocate or blind mentor. If you feel like you are alone in this process, then reach out for help. IEPs can be very intimidating and it's always a great support if you have another person there. An IEP is typically once a year, so my husband has it on his "time off schedule" and makes it a priority. We discuss goals and objectives before the meeting to make sure we are on the same page. We also sit next to each other, so we can reach underneath the table to give a squeeze if things start to get heated (smile).

3. Understand the laws, regulations, and procedural safeguards. This will not only help you feel more comfortable, but the team will recognize and respect parents that are smart advocates. The National Center on Severe and Sensory Disabilities (NCSSD), formerly known as the National Center on Low-Incidence Disabilities created a webpage entitled "IEP Pop Up". It was developed to help parents recognized typical "conversation stoppers" that may be heard in an IEP. Knowing what the "real" issues might be, some respectful but effective responses, and what the laws say about educating children with disabilities can assist you in getting your IEP team meetings moving again in a more positive direction! http://www.unco.edu/ncssd/bviIEP/index.shtml

Here are the questions. When you click on the question, you will find an appropriate response.

1. "It is not reasonable to expect the classroom teacher to describe everything to your child. She has 30 other students."
2. "We were excited to discover how well your child can see!"
3. "We think the cane could pose a hazard to other students. We’d like your child to leave it at the door or in the locker."
4. "Your child doesn’t seem to want to use any specialized devices,” (e.g., a cane, braille, optical aids, assistive technology, etc.)."
5. "We don’t normally recommend a cane for children this young."
6. "We’re sorry. We are not going to be able to provide a one-on-one aide to care for your child like you do.” Or “Of course your child will need a personal aide. We can’t expect our teachers to do all that extra work."
7. "We are concerned about your child’s safety. We can’t let him/her be involved in that activity because we don’t want him/her to get hurt."
8. "Don’t worry, she’s doing fine. It’s normal for children who are blind to be a year or two behind."
9. "Sorry, our school is not equipped with and does not have the money for the assistive technology your child needs."
10. "We can’t get a certified teacher of students who are blind or visually impaired/orientation and mobility specialist (TVI/O&M) to come way out here!” or “Since our TVI/O&M has a large caseload, we can only provide _____ hours/minutes of services per week. "
11. "We don’t do things the way they did in your old school, and so we have to rewrite the IEP."
12. "We did our best to schedule everyone, but the general education teacher is unable to attend."
13. "These are the only job training opportunities we offer at this school."
14. "Some of the braille textbooks haven’t come in yet, but we’re getting them translated as fast as we can."
15. "We don’t feel your child needs braille."
16. "We don’t normally write that into the IEP."

Good luck on your next IEP.
Marla

Addicted to Acronyms

2008-02-08T12:46:00.000-08:00

As a parent of two visually impaired children, it's near impossible to know, let alone remember that we hear... ISFP, IEP, DSBVI, UFBVI, NFB, UCB, NOAH, and now UPOBC?? At a later time, I will discuss each acronym, but for now I will introduce the UPBC.

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. We are a division of the National Federation of the Blind which is the largest organization of the blind in the country. See: www.nfb.org

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.

For More Information or How Do I Join?

Contact Marla Palmer
1062 East Fairway Drive
North Salt Lake, Utah 84057
palmermommy@q.com
801-797-9760

Marla's Personal Note

I have had many friends and teachers inquire as to why we are involved with the UPOBC and the NFB.

The first question, "Why are you involved in an organization for the blind when you children are "only" visually impaired. I feel this is a fair question. In this blog I have used both the words "blind" and "visually impaired" so it doesn't deter parents, teacher, individual away from this site.

Carol Castelleno, a well known author and leader of the National Parents of Blind Organization explained, "The National Federation of the Blind tends to use the word "blind" to include those who are visually impaired. Others--and the field in general--prefer terms like"visually impaired" or "low vision" and make a strict distinction between people who are blind and those who have some residual vision. The problem is that when this strict distinction is made, the next step is to say that "blind people need braille while visually impaired people can use print; blind people must use a canewhile visually impaired people can use their eyesight to travel."

We in the Federation feel that this strict distinction in terminology and then in tools and techniques does a real disservice to those who are not totally blind because it keeps them from learning and using the nonvisual skills that would truly make their lives easier. So I guess you could say that we don't exactly focus more on blind people as opposed to people who are visually impaired; it's that we focus on getting people who are either blind or VI to use the skills that will make them more efficient, graceful, and independent in the tasks of daily life. And these tend to be the nonvisual or blindness skills."

Let's face it, there are low expectations for blind children and even adults. We as teachers and parents can be guilty of "coddling" our children and letting them "just get by". What happens when reality hits and they are suddenly 18? Then what? Do we allow them to be like the other 70% of unemployed blind Americans?

What do I LOVE, LOVE, LOVE? There are many successful, intelligent, employed, socially appropriate, blind adults mentors in the NFB. They are here in Utah and all over the United States! Since my oldest was an infant, we have invited these friends to our homes, to our children's IEPs, to their school to educate students, teachers and staff. We attend meetings, seminars, social events, dinners, and recreation activities so my children can know first hand what is expected, independence.

Mentoring is a powerful tool that's available, but is not being utilized to it's capacity. My children are learning Braille because they have met adults (with low vision) who wished they would've been taught this amazing literacy tool when they were younger. Braille could have been a choice when helping ease neck or eye strain; when labeling their personal files; or helped when giving a speech so they could give eye contact to their audience without worrying about an ink spot on their nose.

The second question I have heard is, "Isn't the NFB militant?" When asked this question, I ask for clarification on what they mean by militant. I don't think that question has ever gone beyond that. No one seems to know.

Is the NFB proactive? Yes. Is the NFB outspoken? Yes. Will the NFB take action if inequality, inaccessibility, or educational laws are not being met? Yes. This is why I am involved, I like an organization that is proactive. Is it perfect? No. There is always room for improvement in any organization. There are members of the NFB that may express their personal opinion about any issue. I try to always remember that personal opinions are just that..their own.

The UPBC and NFB are not the only support/consumer groups that are available. If it's not your "cup of tea", I strongly encourage parents look at everything that is available to network, mentor, and feel supportive. We do not have to do this alone. If you decide to venture elsewhere, please keep me in mind and let's network together!

Welcome

2008-02-08T12:42:00.000-08:00

An official website is in the making, but in the meantime welcome to the Utah Parents of Blind and Visually Impaired Children Blog. Here you will find information and resources that will educate and empower. Each parent should have a solid understanding of their rights, roles and responsibilities. Calendar events, articles, opinions, and comments are welcomed and encouraged. It is my hope that we as parents can form a strong network that will make a difference in the lives of our children and those that will follow.

Marla Palmer
President, Utah Parents of Blind Children