[blindkid] Fw: [vipnews] For the Love of Reading, A Mother's Struggle with America's Special Education System
Jess
jessica.trask.reagan at gmail.com
Sun Jun 28 01:12:33 UTC 2009
Here is a story about Carrie and her son Jordan
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Subject: [vipnews] For the Love of Reading, A Mother's Struggle with
America's Special Education System
The American Chronicle
Braille Literacy: For the Love of Reading, A Mother's Struggle with
America's Special Education
System
Donna W. Hill
May 25, 2009
Jordan Richardson (18, Minneapolis) is a Blaine High School senior with a
3.7 grade point average.
He is a trombonist in the school's jazz band, a reporter for the school
newspaper and in Spanish
club. As a freshman, he was on Student Council. As a sophomore and junior,
he was in Science
Olympiad. In his junior year he was in the National Honor Society and
received a community service
award. His volunteer projects include tutoring students learning English as
a second language and
mentoring blind children at a summer camp. He reads the Constitution for fun
and plans to become a
judge.
When we hear stories about young men like Jordan, we are all proud and
perhaps a bit relieved that
the future is in such intelligent, gifted and generous hands. The fact that
Jordan has done all of
this as a blind person is not the amazing or miraculous part of the story.
In fact, if you get too
caught up in that, you'll miss the point that he and his mother, Carrie
Gilmer, want to get across:
blind people can compete with their sighted peers, when given the tools and
encouragement to do so.
There is, however, something which is extraordinary about Jordan's story. It
involves what his
mother had to go through to get him an education in the first place. Carrie,
who has been president
of the Minnesota chapter of the non-profit National Organization of Parents
of Blind Children
(NOPBC) since 2004, is working to stop what happened to her and Jordan from
happening to other
families. http://www.nfb.org/nfb/Parents_and_Teachers.asp
Unfortunately, her story is all too common. The result is lower achievement,
dependence and the need
for tax-payer support of unemployable blind adults.
Braille literacy is declining. Only ten percent of America's blind children
are being taught to read
and write Braille down from fifty percent in the '60s. Braille's
significance can be glimpsed in
two statistics. Only thirty percent of working-age blind Americans are
employed, and over eighty
percent of them read Braille.
There are three major areas in which a person with low vision may need to
make adjustments: literacy
(reading and writing), orientation and mobility (getting around) and manual
activities (everything
from cooking and sewing to doing the laundry and woodworking.
Does the thought of a blind person cooking bacon or using a power saw make
you cringe a little?
There are blind cooks and carpenters who do these things every day. What is
truly scary is when low
vision students are expected to do them without learning the non-visual
skills which make the safe
accomplishment of these tasks possible.
Sight is a powerful sense. People are naturally inclined to "look" even when
their vision is
unreliable. One of the biggest challenges of educating low vision and
legally blind children is
knowing when to stop encouraging them to use their remaining eyesight.
Should you teach them Braille
when they are reading large print half as fast as their fully sighted peers?
Maybe at a third the
speed? What about at a quarter of the speed, or when they're getting
headaches and not having time
for friends and hobbies? If the child's vision is well beyond the limits for
legal blindness and the
child has a degenerative condition, do you teach Braille early, taking
advantage of the increased
tactile sensitivity in children which makes learning Braille easier in
childhood?
The Special Education system in the US is so biased toward using faulty
eyesight that children are
made disabled not from their eye condition, but from the choices that force
them to settle for
substandard achievement rather than learn non-visual skills. Year after year
from the time Jordan
was in kindergarten, Carrie struggled with a rat's nest of scenarios which
threatened to hold her
son back, limit his potential and rob him of his childhood. From not knowing
how to evaluate a
child's usable vision and refusing to provide adaptive equipment, to judging
his potential against
what they thought was possible for blind kids i.e. not much -- and
sabotaging her efforts, the
Special Education system has given her an uphill battle.
Jordan is legally blind. He has a degenerative condition called retinal cone
and rod dystrophy,
which will probably take the little sight he has eventually. Carrie didn't
know there was anything
wrong at first.
"He liked to get close to things," she says, "but many kids do."
Jordan was also driving his tricycle into the curb. When she expressed
concern to his pediatrician,
Carrie's suspicions were brushed aside as a mother's worry. Not until he was
about to attend
kindergarten did she learn the truth.
"It was the daycare center at the Y where I was working out," she says,
"They mentioned it and I
insisted that the pediatrician send him to an eye doctor."
Carrie remembers the eye doctor frowning and saying, "He has an awful lot of
vision loss for his
age." Jordan was sent home with glasses for his astigmatism, which didn't
help.
When a specialist finally diagnosed Jordan's condition, his vision was
20/400 worse than legal
blindness which is 20/200. The doctor said there was nothing they could do
and that he would call
the state services for the blind to inform them.
"I cried for twenty-one days," says Carrie, "I couldn't understand. How
could he be blind without me
knowing? How could he be blind and still see the McDonald's sign?"
Like most of us, Carrie had little personal experience with blind people,
and her impressions were
not favorable.
"When I was three years old, my grandparents took me to visit a couple they
knew. The husband had
lost his sight," she remembers, "He was really grumpy and barking orders at
his wife."
Other than that, she knew of Helen Keller, Ray Charles, the Sidney Poitier
movie "A Patch of Blue"
and that some blind people could string beads. She believed that blind
people had little chance of
living independent, productive and happy lives.
"I realized that my image of blindness was a horrible one and it hurt to
think that people would
think that way about Jordan," she says.
A Gift From Beyond the Grave
In her pain, Carrie began to notice that something didn't add up. It was the
difference between her
impression of what blindness meant and the bright little boy she knew.
She had just moved and was unpacking a box of literature left by her late
grandmother. On top was
something from the NFB. Her grandmother had a secret. She had lost enough
vision to be legally
blind, and she had made donations to the NFB.
"The word 'blind' just leapt off the page at me," says Carrie, "I read the
NFB books "Making Hay"
and "What Color is the Sun." They made me stop crying and gave me hope.
Then, I made my first big
mistake."
Her mistake was that she assumed the professionals at Jordan's school would
also have a positive
attitude about blindness and would get Jordan the tools and instruction he
needed to reach his true
potential.
"I should have called the NFB right then and there," she says.
In kindergarten, it seemed as though Jordan was on the right track. He had a
Braille instructor with
forty years' experience. She worked with Jordan for half an hour after
school four times a week. She
said he was picking it up quickly and was tactually gifted. The school said
he was doing well.
Carrie didn't realize that they meant doing well "for a blind person." Only
much later did she
understand that to say that Jordan was tactually gifted, represented a
sighted bias, and that even
that first teacher had mythical ideas about blindness and the sense of
touch.
"It's people's ability to use other senses not the strength of those
senses," she says, "People
don't realize how much they are actually using their other senses. They
don't spend time analyzing
what they do. I touched the kitchen counter one day after wiping it off and
I realized that I could
feel that it wasn't as clean as it looked. Also, they don't realize how
often they are wrong about
what they see a person 'looked' nice, the ice 'looked' safe."
Sighted bias notwithstanding, Jordan's first Braille teacher wanted Jordan
to learn Braille and wait
at least until forth grade to decide if he would be able to read well enough
using print. She told
Carrie they would be gradually adding Braille into his school day. As she
retired, she gave Carrie a
prophetic warning.
"She told us to make sure that we held the next teacher accountable, because
there were 'different
philosophies.'"
The Fight Begins
In first grade, Jordan's new TBS (Teacher of Blind Students) wanted to teach
him to use an abacus
for math and work on orientation and mobility (OM). Suddenly, the
thirty-minute sessions were no
longer solid Braille instruction. In addition, the quality of the
instruction changed.
"She wanted to make Braille fun, implying that it wasn't fun," Carrie
remembers, "They just played
Yahtzee and other games that were not even Braille-based. She didn't think
Jordan needed to use
Braille during the day and wouldn't really need it for a long time."
Jordan, who didn't understand why he needed Braille, began to subtly fall
behind. Carrie's other two
children had been fluent readers by then, but Jordan was a very slow reader
and didn't enjoy it. In
first grade, his print reading speed was twenty-five words per minute and
ten in Braille. She
thought he needed more Braille instruction, but the teachers didn't.
Carrie was worried, however. It seemed to her that Jordan would be better at
Braille if he had some
Braille books and was being encouraged to read them. She complained at the
end of that year to the
Director of Special Education. For five weeks, they gave him some Braille
instruction twice a week
but no books.
"They didn't even mention that NLS has Braille books," Carrie says, "I
assumed I had to get them
from the school."
People with print handicaps, including sight loss, dyslexia and other
physical and learning
disabilities, can borrow Braille and recorded books from the National
Library Service for the Blind
and Physically Handicapped: http://www.loc.gov/nls/
In second grade Jordan was having more problems getting around. He was
hesitant about the ground in
front of him. In gym, he was told to sit by the wall so he wouldn't get
hurt.
"He still wanted to hold my hand at seven!" Carrie remembers.
Jordan had also stopped interacting with his classmates. Carrie began to
question the decisions the
school was making. She wanted Jordan to have Braille in the classroom.
In a decision based on convenience and the cost of bussing him home, the
school announced that they
were going to remove him from science and geography classes for special
instruction instead of
teaching him after school. Carrie asked how this could be a good thing
educationally, when he loved
those subjects. She was afraid that would make him dislike Braille.
"He liked the pictures in print books, and I didn't want him to get a bad
attitude."
They then said they could teach him Braille during reading class, but Carrie
believed that Jordan
would still be missing something. She wanted after school Braille
instruction plus some during
school. In school, Jordan received only 5 minutes of Braille spelling
lessons a week and no Braille
books.
Jordan was alone at lunch and not mingling. The Vision Department kept
saying that Jordan could see
up close and was doing just fine. They recommended against adaptive physical
education because "it's
for totally blind kids and they don't do that much anyway." Carrie's
relationship with the Special
Ed staff broke down when they suggested that Jordan join a support group for
behavior problems.
A New Way of Looking at Jordan's Progress
Carrie learned that the school secretary had raised two blind children. Like
Carrie, she had
experienced problems with the Special Ed department. She gave Carrie a copy
of the NFB's "Future
Reflections" magazine. The article "Is Your Child Age Appropriate" by
professional educator of blind
children ruby Ryles made Carrie understand that she was the expert about
whether her son was on
track based on his own potential.
http://www.nfb.org/images/nfb/Publications/fr/fr11/Issue5/f110502.html
Carrie realized that the answer to the article's question was "no," if her
expectations for Jordan
were the same as they would be, if he were sighted. She finally made the
call she should have made
years before. Judy sanders, at the NFB of Minnesota told her how to get
Braille books and stressed
the importance of expecting Jordan to keep up with his class. Carrie entered
Jordan in the "Braille
readers are leaders" contest: http://www.nfb.org/nfb/Braille_Initiative.asp
"The Vision Department at Jordan's school treated me like I did not know
what I was talking about.
They considered his vision to be good and wanted him to use it every
second," says Carrie, "They
acted like my husband and I were trying to make Jordan blind."
Jordan was still not interacting with his classmates. The school suggested
having the class cover
their eyes with wax paper to experience what Jordan could see. Carrie,
however, knew that this
didn't represent Jordan's vision. Judy, who is also blind, offered to come
to school that spring to
give Jordan his Braille certificate and talk to the class about blindness.
When Carrie picked Judy up at the bus station, it was her first experience
with a competent blind
person. It was Judy's white cane that drew her attention.
"She got out of the car by herself and just walked along with me like
anyone," Carrie says.
Everyone loved Judy, including Jordan. Carrie wanted more time to talk about
the NFB's philosophy
and offered to drive Judy home. Judy encouraged her to go to the NFB's
annual convention, saying
they would learn more in a week than she could tell her in years.
For financial reasons, Carrie was reluctant to attend the convention. She
was a stay-at-home Mom and
her husband was a teacher. But, the NFB of MN sent them, and it changed
their lives. Carrie learned
about the slate and stylus the traditional method for writing Braille,
which Jordan had not been
taught. Also, Jordan had been walking all bent over and the school had never
even mentioned using a
cane.
For third grade, Carrie wanted Jordan to learn to use a white cane and to
write Braille. She again
asked that he have Braille books in class. The TBS didn't want to teach the
slate and stylus until
forth grade. Carrie was overwhelmed.
"There were so many issues and so much opposition from the school," she
sighs, "You have to ask
yourself, 'Which battle do we fight?'"
That year, the only time Jordan read Braille was for thirty minutes at night
when his mother
insisted. He was still falling behind. Forth grade was no different. When
Jordan was ready for fifth
grade, Carrie demanded that all of his textbooks be in Braille.
"The TBS banged her fist on the table and said, 'Whatever. He's never going
to be a Braille
reader.'" Carrie says, "She had been telling Jordan, 'Your parents are the
ones who want Braille,'"
Jordan's print reading was still faster than Braille. Braille was harder for
him, and Jordan didn't
understand that that was because he didn't use it.
With his face down on the page, Jordan could read thirty-five words a
minute. His classmates read
eighty-five to ninety or more. Jordan didn't think of reading as a physical
struggle, but he didn't
like to read. That troubled Carrie. Her family loved reading. Jordan was
never a kid to talk back,
argue or have tantrums, but he never read for fun, not even comics.
Ironically, the school obtained Braille texts for Jordan in fifth grade, but
the teacher didn't use
textbooks, preferring work sheets. They didn't have work sheets in Braille,
so Jordan still wasn't
reading Braille during the day except for his weekly spelling list. If the
class was reading a
novel, it wasn't until they were on the last chapter that Jordan received
the Braille version.
By that time, Carrie was panicking and convinced that Jordan needed daylong
Braille instruction, and
asked for all Braille for sixth grade. The TBS said that would ruin him and
that he would get all
d's and wouldn't be able to keep up.
She was told, "You're dooming him. You're going to traumatize him by going
to all Braille and
failure will be the result."
Gym class was still a disaster. Rather than using audible game balls, which
emit a continuous sound
enabling blind kids to catch or hit them, the class was forced to stop the
game to give Jordan the
ball. He was still sitting in the corner most of the time.
In sixth grade, the TBS wanted to pull Jordan from reading class for Braille
instruction, to learn
to use jaws (a screen reader program that works with Windows) and the Nemeth
Braille Code for
mathematics and science notation. Carrie didn't want him to miss reading
because he would miss out
on class discussions on novels. She allowed the TBS to pull him from gym
class, reasoning that it
was better for Jordan to miss gym than to miss reading class. She enrolled
him in the YMCA swim
teem, which was four nights a week plus Saturday meets, as well as bowling
league and ski club.
"At the Y he was really participating."
That was the first year Jordan had Braille textbooks. An amazing thing
happened. At the beginning of
the year, Jordan's Braille speed was twenty words a minute, and his print
thirty-five. In two
months, his Braille speed was up to forty-five with print still at
thirty-five. Jordan suddenly
began to prefer reading Braille.
The victory was short-lived. Jordan's Braille reading speed plateaued at
forty-five. In 7th grade,
Carrie asked for them to work on his fluency. She was told that Braille
readers don't read more than
sixty words a minute. This is only true, Carrie realized later, when they
get haphazard instruction.
Instead of working on fluency, they were surfing the internet and using a
digital Braille note taker
called Braille note, both of which the teacher was teaching herself at the
same time.
Also, Jordan was reading Braille with only one hand and he was a terrible
"scrubber" going back and
forth over words he had just read before proceeding to the next word. Carrie
wasn't sure if this was
due to poor instruction or a reading problem. She begged for a reading
specialist, but was told that
Jordan didn't need one.
Most of Jordan's reading was done on the Braille note, a digital device with
an eighteen cell
"refreshable Braille" pad. It's the Braille equivalent of reading one line
at a time; each cell is
one letter or symbol. This meant he wasn't reading long sentences. Even with
that, Jordan had no
leisure reading time because he needed more time for school work. Even with
a sighted reader, there
was little time for leisure reading.
Again she was faced with a dilemma. Do you drop expectations for homework to
give him leisure
reading? They cut Jordan's homework, so he didn't get the curriculum he was
capable of, but had some
time for leisure reading. Carrie was still worried about the quality of his
Braille instruction. He
worked with the TBS one hour every other day, but the TBS focused mainly on
the computer.
The Hard Lessons of Middle School
In the summer before Jordan entered seventh grade, Carrie took a job at the
NFB training center,
Blind Inc., in Minneapolis, and enrolled Jordan in Buddy camp.
http://www.blindinc.org /
She learned about non-visual techniques for doing all sorts of everyday
activities. She talked to
Jordan's seventh grade teachers about non-visual techniques for science,
suggesting that the
teachers speak with the people at Blind Inc. Her suggestions were rebuffed.
That year, he would have Home Economics and Industrial Arts. Sewing was
first. Their solution was
for Jordan to get fabric and thread in highly contrasting colors. Carrie,
however, knew blind sewers
didn't use that. The TBS finally agreed to talk to Blind Inc and then said
the school would buy the
adapted sewing equipment, which included a sturdy needle threader and a
magnetic strip for keeping
seams straight while using a sewing machine.
Though they hadn't addressed adaptations for Industrial Arts, Carrie was
confident that they were
finally on the same page. She listened with delight to Jordan's stories
about how well he was doing
with his sewing project, a pair of shorts. Jordan received an A. His Mom was
impressed.
"I got a D," she remembers.
When Jordan brought the shorts home, however, the truth of what had really
been going on came out.
Upon inspection, Carrie noticed seam marker lines and realized they had made
him do the project
visually. Jordan never received the magnetic guide that the school promised
they would buy or the
sturdy needle threader. He began to cry and explained that they had tried
using duct tape, but he
couldn't feel it. So, the teacher had drawn lines with a magic marker. In
order to see it, Jordan
had to tilt his head and press his forehead against the sewing machine. He
had threaded a needle one
time using the commercially available foil needle threader, but it took so
long that the teacher
ended up doing it.
"I was in complete shock because he had been saying that it was going
great," she recalls.
Carrie was too angry with the TBS to call. But, things were getting more
dangerous. No
accommodations had yet been made for Jordan's upcoming Industrial Arts
class, and he would be
expected to use power tools including a ban saw and radial arm saw.
Then, there was the snow tubing trip. Despite medical evidence to the
contrary, the TBS had
convinced the classroom teacher that Jordan wasn't really blind, so it
hadn't even entered their
minds that they had a blind student. In addition, Jordan's OM teacher had
been encouraging him to
trust his vision. He came home with two black eyes.
Carrie asked Jordan what he thought his vision was good enough for, and he
said crossing the street.
They soon had an experience that showed Carrie that, even though he didn't
realize it, Jordan was
relying on his hearing to cross streets not his vision. They were returning
from the zoo and
crossing at a congested corner. Carrie thought it was safe and started
crossing between two parked
cars. Jordan yelled to stop. She realized that he had been crossing by sound
and did some
experiments to prove it to him.
When Carrie called the Industrial Arts teacher, he was actually glad to hear
from her. He was
concerned about how Jordan would handle dangerous equipment. He said that
all the TBS had said was
to get the course work to her so she could Braille it. Carrie invited him to
visit Blind Inc. He
spent hours with their wood working teacher and got excited about the
possibilities.
NFB training centers use "sleep shades" so that students are able to resist
using their faulty
vision and develop reliable non-visual skills. The Blind Inc. instructor
suggested painting the shop
glasses black so Jordan wouldn't be tempted to lean into the machines to
see. But when the IA
teacher in his enthusiasm mentioned it to the TBS, she called Carrie, saying
that using sleep shades
would endanger the other students. Although she had no personal industrial
arts skills, the TBS
wanted to assess Jordan's vision on each piece of equipment.
"Jordan likes to use his vision," she told Carrie, who finally comprehended
the depth of sighted
bias that this whole team had had. Every decision was based on it. It was so
ingrained in their
thinking that they were more comfortable allowing a legally blind kid to try
to see what he was
doing with a power saw than to permit him to use techniques that are
designed to allow a person to
safely use power tools without sight. They even believed that the other
students in the class would
be safer.
The TBS insisted that using sleep shades was too dangerous and was an
insurance issue. Carrie
countered by pointing out the danger that the district had put Jordan in
with the snow tubing trip
and his sewing experience. She told them she would pull him from class if
they didn't go along with
the non-visual techniques.
They realized that Carrie had grounds for a law suit and had many meetings.
Jordan is half African
American so they through a diversity specialist onto the team. They agreed
to conduct an experiment.
The team would tour Blind Inc. as well as another training facility that
didn't insist upon using
sleep shades.
This took weeks and class was going on, so they agreed that Jordan would
participate except for
using power tools. The Blind Inc. woodworking instructor volunteered to do
the project with Jordan.
At the end of seventh grade, the team agreed that Blind Inc. had the
superior and safer technique
using sleep shades and Jordan would use them at the higher level IA course
the following year.
Finally, Some Competent Braille Instruction
Between seventh and eighth grade, Jordan attended "Circle of Life," a
science camp held at the
Jernigan Institute at the NFB's national headquarters in Baltimore. The NFB
of Minnesota was having
its convention in the fall, and they asked him to speak about it. Jordan
wrote a speech and read it
at the convention.
"It was painfully slow," Carrie remembers, "Everyone was shocked at his poor
reading skill."
She had been asking for help from others but they didn't know how bad it was
until then. Carrie
brainstormed with people in the NFB. She learned about the two-handed method
of reading Braille, in
which the left hand reads the first half of the line and then jumps to the
next line while the right
hand finishes. Carrie realized that Jordan had never known what fluency felt
like. She remembered
that her older kids had followed along reading print while listening to tape
and tried that with
Jordan and Braille.
Jordan was getting into advanced classes but his mother believed he needed
intense Braille over the
summer between 8th and 9th grade.
"He doesn't need it," the TBS told Carrie, "He's getting straight A's."
Carrie pointed out that it was taking Jordan 4 hours to do what others do in
an hour.
"Things got nasty," she recalls, "The Director of Special Ed said my
concerns were 'insulting to the
staff.'"
She started writing everyone including the school board and superintendent.
Only one board member
called acknowledging that she had been treated horribly, but insisted that
they couldn't provide
intense Braille training. Minnesota State Services for the Blind, however,
sent Jordan to the adult
training program at Blind Inc.
When he started, Jordan's Braille speed was forty-five to fifty words a
minute. For the next six
weeks, the staff taught him the two-handed technique and told him he could
read more than 60 words a
minute. Jordan was motivated. He was doing two hours of leisure reading
daily; his speed was up to
seventy-five.
For ninth grade, Carrie told the new TBS that they only wanted materials
from the school; any
instruction would be at Blind Inc. Between ninth and tenth grade, Jordan
went to the Louisiana
Center for the Blind, another NFB facility: http://www.lcb-ruston.com/
"He really needed to get away from his parents and gain more independence,"
she explains.
Jordan started reading everywhere. In tenth grade, his speed was in the
eighties for leisure
reading. For his honors courses it was in the sixties.
Carrie says that Jordan's high school principal and teachers have been
wonderful. They have high
expectations, and the new Special Ed Director understands where they've come
from. Carrie wanted a
cheerleader and coach, someone to motivate Jordan and encourage him and work
on fundamentals. Every
year since second grade, she had been asking for a reading specialist. She
asked again in eleventh
grade, and the Special Ed Director agreed.
Carrie requested that the reading specialist sit with her back to Jordan and
listen to him read, not
knowing if he was reading print or Braille. The reading specialist
determined that Jordan's print
reading was full of errors and hesitancy and his Braille was much better
with no deficit. She said
it was about practice and encouragement. She gave them ideas she used for
print readers.
"By that time," Carrie says with a laugh, "Nobody wanted to work with me,
though they all loved
Jordan."
But, the new Braille teacher did want to work with Carrie. Carrie didn't
know why she should trust
this new teacher. The new teacher agreed to tell Carrie exactly what they
would be working on.
"She's been teaching him three times a week for two years. If books came in
plastic, he'd be reading
in the shower!"
Now, as a senior, Jordan reads Braille at More than one hundred words a
minute. For leisure reading,
he's up to 125.
Jordan will attend the University of Minnesota, Twin Cities campus next
fall. He is interested in
constitution law, human rights and political science. He says that, if he
makes it to the Supreme
Court, he's going to re institute wigs.
"He'll be OK," his mother says with tears of relief in her voice, "125 is
OK. He can still increase
it and he can survive in college and he enjoys reading and chooses to do it.
If he had gotten
Braille all along, maybe he'd be at 200 words a minute. Every time he reads,
I thank god I hung onto
that. His print reading speed never improved. He wouldn't have made it
without Braille."
SOURCE
http://www.americanchronicle.com/articles/view/103762
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