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Deaf-blindness causes complex problems

By Kathy Hubbard

“Our eyes and ears provide vital ways of interacting with the world around us. The lilt of laughter, the beat of a brass band, the smile of a friend, and the poetry of a landscape are but a few of the life blessings that our senses of sight and hearing help us to enjoy. But for some 40,000 Americans who can neither see nor hear, the world can be a prison of darkness and silence.”

This quote from a 1984 Ronald Reagan proclamation designating the last week in June as Helen Keller Deaf-Blind Awareness Week. Few people are unaware of Helen Keller. She was born on June 27, 1880, and nineteen months later suffered from what, in those days, the physicians called “brain fever.” More than likely, it was actually meningitis or scarlet fever, and it left this precocious child hearing and sight-impaired.

Today, they’ve identified more than 70 causes of deaf-blindness. The most common of which are complications of premature births and CHARGE syndrome. CHARGE is an acronym for several features common in disorder: Coloboma (an eye abnormality affecting the optic nerve); Heart defects; Atresia choanae (a congenital disorder where the back of the nasal passage is blocked); Growth retardation; genital abnormalities, and Ear abnormalities.

Other conditions such as Usher syndrome, Down syndrome, stickler syndrome, dandy-walker syndrome, Goldenhar syndrome, Zellweger spectrum disorder, and Cornelia de Lange syndrome can be causes of deaf-blindness. Prenatal and congenital complications such as very common cytomegalovirus, hydrocephalus, and microcephaly (we heard a lot about this condition when a baby’s head is much smaller than normal during the Zika virus outbreak),

A paper written by Barbara Miles, M.Ed for the National Center on Deaf-Blindness, said, “It may seem that deaf-blindness refers to a total inability to see or hear. However, in reality, deaf-blindness is a condition in which the combination of hearing and visual losses in children causes severe communication and educational needs ….”

Because there are only around 10,000 children and youth in the U.S. who have been identified as deaf-blind, it’s rated as a low-incidence disability. Genders, ethnicity, and ages vary greatly. But, around ninety percent of these children have additional physical, medical, or cognitive disabilities.

This makes educating these youngsters a huge challenge. Miles said, “Children who are called deaf-blind are singled out educationally because impairments of sight and hearing require thoughtful and unique educational approaches to ensure that children with this disability have the opportunity to reach their full potential.”

Those who can see and hear, bearing in mind that these senses can deteriorate as we age, have a wide world to look at. Deaf-blind children’s world extends only as far as their fingertips.

Many children called deaf-blind have enough vision to move about in the 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,” Miles said.

It’s not surprising that behavioral and emotional problems are often an outcome with a child who can’t hear or see. Miles explained that a person who is deaf-blind “must somehow make sense of the world using the limited information available to them.

In all conversations about relationships, the discussion revolves around communication. With a deaf-blind child, communication creates a challenge for families, caregivers, and teachers.

“The people in the environment of children who are deaf-blind must seek to include them – moment-by-moment – in the flow of life and the physical environments that surround them. If they do not, the child will be isolated and will not have the opportunity to grow and to learn,” Miles said. So, as a result, a very tactile communication style is often necessary.

Miles said that despite the fact deaf-blindness creates unique challenges, these challenges aren’t insurmountable. Many people have developed a high quality of life. She said these people have three attributes in common.

“First, they have each, in their own way, come to accept themselves as individuals who have unique experiences of the world, and valuable gifts to share.” Second, they’ve had positive educational opportunities, and third, they live in an accepting community that has an “attitude of welcoming acceptance.”

Kathy Hubbard is a member of the Bonner General Health Foundation Advisory Council. She can be reached at kathyleehubbard@yahoo.com.

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