Each year the last week of June is devoted to recognition of the deaf-blind people. While Deaf-Blind Awareness Week pays homage to Helen Keller, the deaf-blind woman who was born June 27, 1880, the week also focuses on increasing public awareness and understanding of deafness-blindness.
Lenore Holte, PhD, audiologist at the Center for Disabilities and Development with University of Iowa Children's Hospital, talks about deaf-blind people:
How many babies are born each year affected with deaf-blindness?
We don't know how many are actually born with this condition because the identification often happens when the child is a little older. Newborns are now routinely screened for hearing loss and we know that about one baby in 400 is born with hearing loss. For many reasons, screening for visual impairment at birth is not possible, so we don't know how many are born with this condition, but we do know that about one in 3,000 children are blind. With respect to one of the most common causes of deaf/blindness, a syndrome called Usher Syndrome, about one baby in 20,000 is born with Usher Syndrome
Is deaf-blindness a birth defect or a condition that develops after birth as a result of an illness or disease?
There are many, many causes and the onset of the condition can happen at any time, depending on the cause. Many cases are genetic, with the deaf/blindness occurring alone or as part of a syndrome. Some of the more common of these syndromes are Usher syndrome, Bardet-Biedl syndrome, and Norris syndrome. With respect to infections, some are congenital, or present at birth, such as congenital cytomegalovirus or HIV (AIDS) and some happen later, such as bacterial meningitis.
Are all newborns screened for hearing and sight?
As I mentioned before most newborns in the United States and in many other countries are now screened for hearing loss shortly after birth, but not for vision loss. Assessment of vision in infants is very challenging and time consuming, even for a general ophthalmologist.
Has the advent of the cochlear implant improved the prospects for the child born deaf/blind? How?
Yes! Prior to the availability of cochlear implants, children who had no measurable hearing primarily used sign language to communicate, but of course, that assumes the child has adequate vision to see the signs. This was a very difficult situation for the deaf/blind child, who could not see the signs and had to learn to sign into another person's hand and to understand signs produced in their hands. (This is one way Helen Keller communicated.) Cochlear implants have greatly improved the ability of deaf children to learn to talk and understand speech and this has been particularly beneficial for the child who also has no vision.
What defines the word 'blindness' is it absolute darkness or limited sight?
My friends in Ophthalmology tell me that blindness is not just total blackness, but an arbitrarily chosen level of vision that significantly handicaps a person's ability to function as an adult. Total blackness in both eyes is very rare among people who are blind. Blindness is defined in the U.S. as a visual acuity of 20/200 or worse in the better seeing eye, despite wearing the proper spectacle correction, or a visual field of less than 20 degrees.
Both hearing and vision impairment occur in a variety of levels of severity. For this reason, many professionals prefer to use the term "dual sensory impairment" to describe the situation in which a person has both limited hearing and limited vision, because "deaf/blindness" seems to suggest that the person has a complete absence of both senses.
Does deaf-blind affect the intelligence level or ability for the child to learn?
Deaf/blindness by itself does not affect intelligence in any way, as long as an effective communication method can be developed through which a child can learn. Of course, many of the causes of deaf/blindness can also problems in learning abilities, so while the dual sensory impairment doesn't affect intelligence, cognitive problems often co-exist along with deaf/blindness.
What are some of the ways the Center for Disabilities and Development teach these children?
At the Center for Disabilities and Development, we can provide interdisciplinary evaluations for children who are deaf-blind. We have experts in:
- Developmental pediatrics
- Speech-language pathology
- Audiology
- Psychology
- Special education and
- Occupational therapy
- Physical therapy
These experts evaluate the child's communication and educational needs and serve as a resource for the family and the teachers and therapists who work with the child in his or her home community.
We find that outcomes are best when an interdisciplinary team approach such as this is used. A special communication device may be recommended and, for very young children, therapeutic techniques are used that encourage the child to explore the environment using the tactile sense, or by feeling.
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