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DEAF-BLINDNESS:
IMPACT OF SENSORY LOSSES ON ATTACHMENT, COMMUNICATION,
AND CONCEPT DEVELOPMENT
Presence of Additional Disabilities:
Another very significant reason why we cannot think
of deaf-blindness as simply the sum of deafness and
blindness is that when a person is missing both hearing
and vision, it is highly likely, though not necessarily
the case, there will be additional medical and neurological
involvement that will affect his overall developmental
growth. This becomes truer as advances in medicine
result in the saving of lives of children born with
multiple congenital abnormalities and with rare genetic
syndromes. In such cases, the challenge to communicate
with these children is intensified: Caregivers and
educators must be able to imagine the experience of
one who not only cannot see or hear, but who may be
also limited physically, medically, mentally, and/or
emotionally. Only by being able to imagine their experience
can we communicate effectively with these children
and help them communicate with us.
Importance of Diagnosis and Assessment: We
need to have as clear an idea as possible of what
a child hears and what he sees. This essential information
will enable us to imagine, with as much accuracy as
possible, his experience of the world so that we may
thereby connect with his and help him to connect with
the world around him. The importance of these assessments
is often underestimated, especially where a child
with multiple disabilities is concerned. Indeed, the
use of clinical assessment, combined with specialized
functional assessment, is essential in the process
of enabling the student with deaf-blindness to join
families, friends and environment.
Medical assessment is also a very important component
of the diagnosis and assessment process. Many medical
treatments exist that can result in a dramatic improvement
in seeing and hearing. These can range from the prescription
of medication, removal of middle ear fluid, and the
surgical treatment of glaucoma. Because so many children
are Deaf-Blind in addition to vision and hearing impaired,
we must take every opportunity to ensure that we are
maximizing the use of every avenue of learning and
preserving whatever residual senses exist.
DEAFNESS: IMPACT OF
SENSORY LOSSES ON ATTACHMENT, COMMUNICATION, AND CONCEPT
DEVELOPMENT
What does it feel like to have limited, or no, vision
and hearing? What does this mean in terms of how one
learns to communicate?
Deafness:
How might an inability to hear affect how a person
connects with those around him?
Feeling of Powerlessness in Parents:
A deaf infant with normal vision will not have the
same trouble developing early bonds with his caregivers
as an infant who is blind because the eyes are a main
avenue for these early bonds. Smiles can easily be
exchanged and body language can communicate affection
and connection when a child is hearing impaired and
has intact vision. It can happen, though, an early
diagnosis or suspicion of deafness may instill in
the parents of a baby who is deaf feelings of powerlessness
and/or depression that may affect their rapport with
their child. The most typical effect these feelings
of powerlessness are likely to have, is to cause the
parents to become "over-directive" in their
attempts to communicate with their children; that
is, their communication with their children more resembles
a monologue that a dialogue. They take more turns
than their children do, and most of these turns are
commands, requests, and directive questions. This
over-directiveness may have the effect of causing
the infant to be less communicative, less spontaneous,
and less socially adept. These inhibitions may affect
his later language development. Because language skills
grow out of active engagement with the world, they
do not flourish when a child is a passive reactor
to an over-directive environment. When parents could
be helped to feel less anxious and more powerful,
they help their children who were deaf to be better,
more spontaneous communicators.
Language Development in a Hearing/Speaking Environment:
Deafness most significantly affects communication
in the development of language. People need to have
language input in order to learn language. Without
accommodation, a child who is deaf in a hearing world
does not have access to enough language to significantly
activate his own innate capacities to develop language.
The innate capacities for language seem to be most
flexible and active during the early years of life.
If a child does not receive language stimulation when
young, he is at particular risk. A child thus deprived
may never be able to be fluent in any language.
Hearing persons receive most of their language input
through their ears. Before a child can say his first
words, he has heard thousands of words and sentences
thousands of times, and has somehow begun to make
sense of them. A child without hearing or with severely
impaired hearing does not have access to language
input unless it is provided to him through special
means. Even certain kinds of relatively moderate hearing
losses that allow a person to hear at speech levels
can greatly restrict the useful linguistic information
a child receives from his environment because many
significant sounds are obliterated.
A child who is deaf or severely hearing impaired and
who grows up in a hearing world is at a distinct disadvantage
for learning language. His eyes must serve as the
sole receptors not only of words, but of sentences,
intonation patterns, and emphasis; they must also
take over the "antenna-like" function that
the ears serve for hearing people, scanning the environment
on all sides, picking up indications of movements
that would tell of danger.
The eyes alone will miss many of these things. Lip-reading,
even at its best, is a very inefficient way to receive
language. Estimates are that an intelligent speech-reader,
with good visual access to the speaker's face, and
with good contextual clues, understands with certainty
only about 40% of the words spoken to him. Given this
fact, one can begin to imagine the limitations of
a person who is deaf and what they must live with
when spoken language is their only method of communication.
If visual impairments and/or any other impairment
are added to the deafness, the communicative isolation
becomes profound indeed.
Language Development in a Signing Environment:
Research shows that children who are deaf and
have deaf parents, and who are also raised in an environment
where sign language is the primary medium of communication,
do not have trouble learning language in the ways
that children who are deaf and have non-signing parents
do. Children who are deaf and who are exposed to sign
language from birth "babble" with their
hands. At the same age their hearing peers babble
with their voices. They also produce their first recognizable
signed words at the same age as their hearing counterparts
produce spoken words. They also make two and three-word
sentences earlier than peers who are hearing do. Children
who are deaf and have signing parents who are deaf,
tend to fare better socially later on, probably because
of their increased self-esteem, ease with communication,
and the availability of appropriate role models for
them.
DEGREE OF AUDITORY
IMPAIRMENT
Below is a table, which explains the varying degrees
of auditory impairment.
| HEARING THRESHOLD
LEVEL |
EDUCATIONAL IMPLICATIONS |
| 15 to 30 decibels
(dB) Slight to Mild hearing loss |
May have some difficulty understanding
speech if faint or distant. The
louder, voiced speech sounds (for
example, vowel sounds) and b, n,
d and other sounds that have vocal
vibration are audible, but voiceless
consonants (such as th, s, sh, f)
may be missed. Will generally benefit
from amplification. Speech will
be important for communication |
| 30 to 50 decibels
(dB) Moderate hearing loss |
Must be within
a few feet of the speaker to understand
speech. Many speech sounds at a
normal conversational level will
be missed. Will benefit from amplification
in most cases. Speech can be an
important part of communication
for some with this degree of loss. |
| 50
to 70 decibels (dB) Severe hearing
loss |
Speech must be very loud and
at very close range to be understood
at all. Group conversations are
difficult. Can hear loud environmental
sounds. Amplification will likely
be helpful. May benefit from non-speech
language alternatives, such as sign
language. |
| 70
decibels (dB) or greater. Profound
hearing loss |
Little reliance on hearing as
primary channel for communication.
Visual communication will be most
beneficial. Will likely benefit
from sign language, which may be
combined with amplification to provide
speech reading and to allow perception
of rhythm patterns of speech and
loud environmental sounds. |
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BLINDNESS: IMPACT
OF SENSORY LOSSES ON ATTACHMENT, COMMUNICATION, AND
CONCEPT DEVELOPMENT
What does it feel like to have limited, or no, vision
and hearing? What does this mean in terms of how one
learns to communicate?
Blindness:
If a child is born totally blind, how will that
limitation affect his connection with those around
him?
The literature estimates that 75% of most people's
learning comes through vision. This sounds very dramatic
and may seem overstated, but this statistic rightfully
highlights the great importance of a child's visual
connection with the environment-with objects, people,
actions, and relationships.
Bonding:
Studies have found that most parents of babies
who are blind needed to be taught not to look for
responsiveness and initiative in their children's
faces, but to look instead at their body language,
especially at their hands. This is not natural for
us because we are so conditioned both to look at another's
face for responsiveness and to express ourselves through
our own faces. In fact, for a sighted infant, the
eyes are a main way of initiating social exchange.
A baby, through their eyes, expresses attention, longing,
doubt, boredom, questioning. Parents of blind babies
were taught to look at their children's hands rather
than their faces for these signs of attention. They
saw; excitement, exploration, and anticipation, and
they were richly rewarded by discovering the babies
were, in fact, expressing a wide range of feelings
and interests, and emotions that were not evident
on the children's faces. Once the parents could see
this, a more satisfying dialogue could resume between
infant and parents. Even grief could be managed when
the baby brought his own rewards in response, in diversity
of social exchange, and in becoming an active partner
in the love relationship.
Establishing Object Performance:
For an infant who is blind and who is only a few
months old, an object does not exist if they are not
touching it. Even toys in the baby's crib might as
well not exist if they don't accidentally put their
hand on them or roll over onto them. The sighted infant
learns about the existence of objects apart from others
by learning to synthesize information from their eyes,
their hands, and their mouth. The play that sighted
babies do in front of their faces, at first accidentally,
and later intentionally, with their mouths, their
hands, their fingers, and with toys, teaches them
that what they see has substantiality. Through repeated
experimentation, practiced for hours at a time, they
learn that certain movements create certain visual
results, and that certain visual stimuli have certain
physical feelings associated with them. Gradually,
through trial and error, they are able to reach for
and grasp something they see with their eyes. They
have come to trust the information from their eyes
that tell them the object they are not yet touching,
has substantiality, and, if reached for, will reward
their open hands with texture and weight. They have
come to believe this information, so surely, that
they trust that even if the object is covered with
a cloth, or dropped on the floor out of sight, will
still exist. This is what we call object permanence.
Children who are blind have a harder time than sighted
children do in establishing object permanence. That
is, they could not as easily hold the image of an
object in their minds when the object was not physically
present. The ability to do so is intimately related
to the ability to name and categorize objects, and
thus is clearly tied to language and conceptual development.
Blind children deprived of the visual connection with
objects to one degree of another, must learn other,
less direct ways of communicating with the object,
world, or learning about it, trusting its very existence
apart from their physical connection with it. For
a child who is blind and can hear, the ear and sound
begin to substitute for the eye and sight. Clapping
games, toys that make noise, their hand on father's
speaking mouth, the accidental and later intentional
brush against a hanging bell, are the experiences
that teach "ear-hand coordination" and the
beginning of a sense of object permanence. Given enough
auditory stimulus in place of visual stimulus, the
child who is blind will come to trust that mother's
voice means mother is near, that a bell sound indicates
the existence of a round metal object, that a lullaby
sound tells that a favorite wind-up teddy bear is
near, even if the hands are not able at once to contact
with these things.
Now, you have begun to get a sense of the monumental
task ahead with an infant who is both profoundly deaf
and totally blind. Right here, at this most basic
juncture of development whom the baby must come to
know that objects exist apart from themselves, the
baby who is Deaf-Blind has a very hard task that will
require much help and patience. Likewise, their family
will need a great deal of information and support
to build these early relationships.
Children who are blind and do not receive help in
establishing object permanence will lag behind in
language development, the ability to name objects
depends upon some sense of their existence apart from
oneself. With help, this naming facility will happen
in due course, not far behind a normally sighted child's
ability.
Mobility:
Another lag will happen too, if the child who
is blind is not helped to achieve object permanence.
This child may be slow to develop mobility and may
therefore have additional cognitive and communicative
delays. Moving around in the world and exploring are
ways in which a child comes to know about their world,
develops curiosity, and learn about the ways in which
people and objects are related to one another. Mobility
develops in large part, in a sighted infant, as a
result of vision. Visual objects are "lures"
for the child; they draw them out into the world.
They learn to crawl by attempting to reach something
they can see but cannot yet touch. They learn to walk
as their visual world draws them upward. As they learn
these skill, they become more of a conversationalist,
asking questions, protesting, and requesting things.
Their communication skills develop as they move about
in the world more and more.
The child with sight and hearing is motivated to crawl
toward the brightly colored toy across the room or
toward Grandma's outstretched arms and encouraging
words. Without visual lures, or the sound lures that
emerge with object permanence, a child who is blind
will not be motivated to move forward. In many instances,
it is not mobility training per se that helped children
who are blind to learn to crawl and walk, but it was
"educational work in the area of human attachment.
An educational program that provides training for
the parents in bonding with their children and in
helping their children learn about reaching "can
confidently wait for the baby to invent mobility for
themselves. Then, cognitive and communication gains
will follow naturally as the child begins to explore
their world.
Developing Abstract Concepts:
Finally, we must mention the effect that limited
or absent vision is likely to have upon conceptual
development and, as a result, upon communication.
A child who is blind gains knowledge of the world
through their reaming senses: hearing, touch, taste,
smell, and kinesthetic experience. Some objects and
ideas are particularly difficult to experience through
these senses alone. How would one explain what a cloud
is to a child who is blind? What about a sunset, a
rainbow, stars? The absence of the experience of such
things is only really a deficiency when viewed from
the unreflective point of view of those of us who
are sighted. If we are sighed people communicating
with persons who are blind, we must be careful not
to assume that their experiences match ours in all
areas; we must remember, as we speak to put ourselves
in their shoes. We must not assume that lack of knowledge
of some things, we take for granted, means that they
are unintelligent or that communication is therefore
impossible. It may actually be a richer communication
if we each take the time to make sure we understand
one another.
The person who is sighted, from the point of view
of the person who is blind, may actually be "deficient"
in other senses. Sight usually provides a great percentage
of the information that we receive about the world.
Without that focus, or dependence on vision for connection,
the other senses may become more highly sharpened.
NYSTAGMUS
Nystagmus is an involuntary eye movement of one or
both eyes in any or all fields or gaze. It can be
a primary or secondary diagnosis. Eye movements can
be jerky, slow, pendular, or rotary. The amplitude
and frequency of Nystagmus is reflective of the severity
of the congenital ocular visual loss. Many people
with this condition are partially sighted; some are
registered as blind; few can drive a car (ME); most
encounter some difficulties in their everyday life,
both practical and social, and some lose out on education
and employment opportunities.
The eyes and/or the head move from side to side. The
person may cock their head to look from a position
where eyes have the least movement (refer to number
five). Vision is usually reduced because of difficulty
focusing on one spot.
There are two (2) primary types of Nystagmus. Sensory
and Congenital Motor Nystagmus:
Congenital motor Nystagmus is due to impaired
brain control, not to visual loss.
Sensory Nystagmus is a symptom, not a diagnosis of
visual impairment. Sensory Nystagmus appears several
weeks or even months after birth. It is associated
with pathology of the anterior visual pathway and
is caused by early ocular-visual loss.
A common misunderstanding is that people with Nystagmus
see stationary objects as moving in conjunction with
their eye movement. Individuals with Nystagmus usually
see objects similarly to individuals with no visual
impairment, however, there may be reduced acuity and
some difficulty-maintaining fixation especially with
the sustained effort of visual concentration tasks.
Distance vision, oculomotor coordination, and visual
endurance are influenced by Nystagmus.
Generally, individuals with congenital motor Nystagmus
can achieve a "null-point," or a position
where random eye movement is either reduced or stilled.
Head and/or eye movement, particularly eye movement
to the extreme end of the lateral gaze, may ease localization
of the null point. Due to the awkwardness of some
extreme head or eye turns, a person may be limited
to short-term use of the null point for critical viewing.
Modification and/or adaptations may include: Provide
good illumination; no treatment totally effective
beyond treatment of primary condition; magnification
may help; relaxation techniques may slow eye movement.
Depth perception and field of vision is usually
reduced by Nystagmus with a result that sufferers
may be prone to tripping or clumsiness. Coordination
is usually adequate for most tasks, but people with
Nystagmus are unlikely to excel at sports needing
good hand eye coordination.
Incidence. Experts agree that Nystagmus affects
about one in a thousand people.
Causes. Nystagmus may be inherited or a result of
another sensory problem. In some cases it occurs for
no known reason. It can also develop later in life.
Effects. Nystagmus affects different people
in different ways. While there are general patterns,
good advice for one person may be inappropriate or
even bad for another, especially when other eye problems
are present.
Additional information about Nystagmus:
- Glasses or contact lenses do not correct Nystagmus,
although they should be worn to correct other vision
problems. Nystagmus often affects the nerves behind
the eye rather than the eye itself.
- People with Nystagmus are not simply nearsighted.
Many can and do register as partially sighted or blind.
Vision often varies during the day, and is likely
to be affected by emotional and physical factors such
as stress, being tired, nervousness, and/or unfamiliar
surroundings.
- The angle of vision is important. Most people with
Nystagmus have a null point (by looking to one side
or the other at sometimes-odd positions) where the
eye movement is reduced and vision improved. Those
of us with a null point will often adopt a head posture
to make the best use of our vision. Sitting to one
side of a screen, blackboard, etc. often helps.
- Small print. Many of us can read small print if
we get close enough or use a visual aid. However,
the option of large print material should be available
and all written information should be clear. It is
very hard to share a book with someone else (read
together) because it will probably be too far away
or at the wrong angle.
- Good lighting is important. If in doubt, get another
specialist's advice or call me for additional information.
Some people with Nystagmus may be sensitive to light.
- Computers are used by many people with Nystagmus,
who benefit from them as they can position screens
to suit their own needs and adjust brightness, character
size, etc. However, some people find it difficult
to read computer screens, especially if the font is
small.
- Reading speed may (almost 100% of the time) be reduced
by Nystagmus because of the extra time needed to scan,
but it should not be taken as a sign of poor reading.
- Balance can be a problem, possibly because of poor
depth perception, which can make it difficult to go
up and downstairs. Usually downstairs is the more
difficult of the two.
- Final reminder about Nystagmus. A widespread lack
of understanding of Nystagmus is often as much a source
of difficulty as Nystagmus itself.
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