The Struggle for Existence: Case study of a deaf-blind

child
Rumiz Uddin Ahmed
Deputy Director
National Institute for the
Intellectually Disabled (NIID)
SWID Bangladesh
Introduction:
So far I know, the issue of deaf-blindness is not very much dealt with in our
country. But it is time to think about this group of people with multiple
disabilities. Most of the organizations working in the field of disabilities put
emphasis on single disability of a person. No organization is working with this
group of people with due importance. Though any organization is not
providing specialized service to the deaf-blind children, still they live in the
society. They have to struggle for existence with the available opportunity at
any organization or society or in the family. The present paper describes a
suspected case of deaf-blindness who is struggling to survive on the beautiful
earth with the support of professionals working for the intellectually disabled
persons.
Definition:
Children having more than one kind of disability are called multiple
handicapped children. A study shows only 0.5% of disabled persons have
multiple disability (Mayer, 1991). In India 12.3% of disabled persons have
multiple disability (Pandey & Advani, 1995). Another study conducted on
visual impaired in British Columbia shows visual with intellectual problem
30.8%, visual with hearing problem 10%, visual with epileptic problem 7.5%,
visual with cerebral palsy problem 6.2.
Deaf-blindness is a kind of multiple handicap. The deaf-blind child is one
whose combination of visual and auditory impairment results in multi-sensory
deprivation (Jan, Freeman & Scott-1977). According to Waterhouse (1972)....
deaf-blind are not only those who are completely devoid of sight and hearing,
like Helen Keller for example, but also the blind with partial hearing, the deaf
with a visual defect.
If a child who is deaf-blind has some useable vision and/or hearing, as many
do, her or his world will be enlarged. Many children called deaf-blind have
enough vision to be able to move around in their environments, recognize
familiar people, see sign language at close distances, and perhaps read large
print. Others have sufficient hearing to recognize familiar sounds, understand
some speech, or develop speech themselves. The range of sensory
impairments included in the term deaf-blindness is great. Deaf-blindness is
often accompanied by additional disabilities. Causes such as maternal rubella
can also affect the heart and the brain. Some genetic syndromes or brain

injuries that cause deaf-blindness may also cause developmental delays

and/or physical disabilities. (Sense International, India).

Characteristics and needs of the deaf-blind persons:

Diagnosis of the deaf-blind person is very complicated and sometimes
they are mistakenly diagnosed as intellectually disabled.
A deaf-blind is person whose world of experience is narrow due to his
sensory limitation.
The challenge of learning language is perhaps the greatest one that
deaf-blind children face.
A person who is deaf-blind also faces further the challenge of learning
to move around independently.
The deaf-blind child may have severe limitation in social and self-care
skills.
Some of them may have problematic behaviors.
In absence of extra-effort they fail to earn required experience
essential for developing intellectual capacity and age appropriate
behavioral competence.
The most important challenge for parents, caregivers, and teachers is
to communicate meaningfully with the child who is deaf-blind.
As the child who is deaf-blind becomes comfortable interacting nonverbally with others, she or he becomes ready to receive some form of
symbolic communication as part of those interactions.
The deaf-blind people need to be communicated through Touch Cues,
Object Symbols, Sign Language, Gestures, Picture Symbols, Lip
Reading, Braille Writing etc.
Along with non-verbal and verbal conversations, a child who is deafblind needs a reliable routine of meaningful activities.
A deaf-blind child also needs a meaningful social and educational
opportunity to develop their abilities and fulfill his/her psycho-social
needs.
Children who are called deaf-blind are educationally isolated because
impairments of sight and hearing require thoughtful and unique
educational approaches in order to ensure that children with this
disability have the opportunity to their full potential.
Particulars of the Case:
Name : Wasi Istiaq Hossain
Age : 18 years
Sex : Male
Family status

Middle class family living in the metropolitan city, both parents, grand
parents and one younger brother are in the family. All are cooperative to each
other.
Diagnostic category:
Vision: Congenital total blindness in both eyes (Retinal Dysplesia).
Hearing and speech: Early childhood auditory assessment claims no
hearing loss but in practice the boy responds only to selective familiar verbal
request of selective persons till to date. He has not yet learned to speak. No
abnormality of vocal mechanism has been detected and quality of auditory
perception is not known.
Intellectual capacity: It is difficult to assess the intellectual capacity of the
boy through verbal method because he cannot speak or through performance
because he cannot see. But apparently it seems that his understanding is
poor compare to his age.
Developmental history:
The parents detected no abnormality until three months of his age.
At age three months parents started consulting the physicians for
repeated eye movement of the boy and found out his blindness.
The boy gained bowel control and walking at the age of around 4
years. He was very much fearful to walk.
Attempt made to admit the boy in the schools for the blind children but
rejected due to his multiple disabilities.
Finally he was admitted in the school for the intellectually disabled
children under SWID Bangladesh at Dhanmondi, Dhaka in 1998 at the
age of 10 years, keeping in mind his deaf-blindness or multiple
disability, and till to date he is attending the same school.
At present he has got epileptic seizures and sleep disturbances and
taking medicines
Justification of admission:
He was a child with disability and he and his parents needed help in
educating and developing skills. As it has already mentioned that there was
no institution which deals with the deaf-blind or such a multiple disabled
children. Though it is a school for the intellectually disabled, it was thought
he could be helped in socialization and other activities which is essential for
psycho-social and cognitive development.
Behavioral status at the time of admission:
Poor social awareness
Could not speak
Unable to differentiate edible from inedible items
Needed full support in self-care
Unable to express his toilet or other needs

Knew close persons

Poor understanding
Poor response to his name
Followed some instructions of familiar persons.

Educational goals:
Socialization
Engagement in some activities
Teaching self-care skills
Development of understanding
Mobility training
Communication skills training
Academic skill training?
Psychological well-being
Teaching techniques:
Behavior Modification
Communication through touch, sound cues and spoken language
Activities:
Play- manipulating toys, jigsaw, Lego, everyday instruments etc.
Physical activities- free hand exercise, cycling, working on exercise
machines
Group activities- Daily assembly, walking, running in a group, attending
in the class
Pre-academic activities- drawing, painting, paper work etc.
Interaction with other children and teachers
Daily living activities at home and at school- training on toileting
activities, bath, cleaning, taking foods etc.
Present behavioral status:
1. Motor skills- Able to use both hands and feet for walking and other
activities
2. Mobility- Can go around in his familiar environment, at home and at
schools
3. Auditory skills- Responds to familiar sounds including name
4. Visual skills- Can not see anything even does not responds to flash
light
5. Speech skills- Can not speak any meaningful word, only makes some
meaningless sounds
6. Self-care skills- Has bowel control, goes alone to the toilet, does
cleaning; eats alone, cleans hands and faces; takes bath alone

7. Cognitive skills- Identify own things like dress, toys, follows some
instructions
8. Social skills- Likes to be with the familiar persons, recognizes parents
and other close persons
9. Academic and work skills- No academic or work skill has developed so
far.
10.Recreation- Likes to play with toys, enjoy music, sounds etc.
11.Emotion- Most of the time happy, sometimes shows temper if his need
is not fulfilled or cannot express his needs.
Parental Reaction:
The boy has developed through the schooling specially his understanding
and he enjoys school activities and his friends.
Remarks:
The boy has received limited services due to lack of expertise in teaching the
deaf-blind persons, still he has got some services from the said special school
for the intellectually disabled persons.
Recommendations:
Developing awareness among the public and professionals
regarding multiple handicapped people including deaf-blind
people.
Organizing
training courses on teaching the multiple
handicapped persons including deaf-blind people.
Creating provision for educating the multiple handicapped
children especially deaf-blind children in the organizations
working with the disabled.
Appropriate rehabilitation mechanism in to be developed
considering their limitations.

References:
Jan, J.E., Freeman, R.D. Scott, E.P. (1977). Visual Impairment in Children and
Adolescents. Grune & Stratton, New York
Meyer, L.H (1991). In Exceptional Children, Nanda & ZamanThe Salvation
Army, Dhaka
Pandey, R.S & Advani, L (1995). Perspectives in Disability and Rehabilitation.
Vikas Publishing House Pvt. Ltd. New Delhi
Waterhouse, E. J. (1972). Paper presented at the Second Symposium on
Planning for Public Relations and Rehabilitation. Athens, Greece.
Knowing About Deaf-Blindness. Sense International (India), Gujrat

National Institute for the Intellectually Disabled (NIID)

SWID Bangladesh, 4/A Eskaton Garden, Dhaka-1000
Tel: 9356592, 933 4009 Fax: 8319438; E-mail: swidbd@accesstel.net
Website: www.swidbd.com