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

Rumiz Uddin AhmedDeputy 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

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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 non-verbally 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 deaf-blind 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 HossainAge : 18 yearsSex : Male

Family status :

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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

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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

activities2. Mobility- Can go around in his familiar environment, at home and at

schools3. Auditory skills- Responds to familiar sounds including name4. Visual skills- Can not see anything even does not responds to flash

light5. Speech skills- Can not speak any meaningful word, only makes some

meaningless sounds6. Self-care skills- Has bowel control, goes alone to the toilet, does

cleaning; eats alone, cleans hands and faces; takes bath alone

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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

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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

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