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Deafness is not a disease
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With patience, love and support, deaf children can have the same advantages as hearing children
By Dr. Cathy Chovaz-McKinnon
There are as many ways of defining deafness as there are ways to experience it. A person may be born deaf, be deafened at a very young age, or be deafened during childhood or adulthood. It is estimated that one in every 1,500 babies born in Canada have hearing loss and that by the age of five, four per cent of all children have some degree of hearing loss.
From the medical perspective, deafness is defined as the inability to hear within the normal ranges. It is related to the results of a test (audiogram) measuring both the ability to hear sound and the ability to understand noises and words.
The medical view has tended in the past to view deafness as a lack of something, rather than the presence of anything. This perspective tends to be a “broken ear with a child attached” model. It was not so long ago that deaf children were described in very bleak terms as living isolated and lonely lives with considerable emotional difficulties and behavioural problems.
In contrast to the medical view, many Deaf individuals have an entirely different perspective. Capital “D” Deaf people perceive themselves as members of a smaller linguistic minority (speaking American Sign Language) with a very rich cultural identity. The results of a hearing test are not needed for membership — hearing loss can range from minor to profound. Research has shown that there is no difference between hearing and deaf/Deaf groups on factors such as IQ, memory, or mental illness.
Detecting a problem
In most cases, parents suspect “something is wrong” when their child doesn’t react as expected, or in the same way as their siblings. Often these same parents recall a vague, pervasive uneasiness, and will attempt to disprove their own suspicions through homemade tests and screening procedures. Clanging pots or slamming a door may cause the deaf baby or toddler to react either through the actual detection of the very loud noise, the visual stimulus, or the vibrations felt through the actions. The turn of the head or the blink of the eyes may be enough to reassure the parents that their child does respond to some sort of noise-related cue and could not possibly be deaf.
Many parents also say their family physicians have not taken their suspicions seriously. Given that the family physician must see a great number of overly anxious parents, and given that all children do different things at different times, this may account for the hesitation to refer families immediately to the care of a specialist.
Making the diagnosis
There has recently been a positive push for hospitals to implement mandatory screening for deafness, however, many children are still not screened early on and their hearing loss is not diagnosed until their second or third year of life. The age of diagnosis is influenced by a variety of factors including the degree of hearing loss, the presence of a genetic history of deafness, the presence of a prenatal disease such as maternal rubella known for causing deafness, a significant illness following birth (such as meningitis) known to be a cause of deafness, the receptiveness and initiative of the family physician to request a formal hearing assessment, the number of other children in the family, and finally, the willingness of the parents to identify and acknowledge a “difference” in their child and undergo investigation as to the cause.
Parents tend to initially react to the diagnosis with denial, which is a healthy, universal reaction to severe trauma. The tragedy is that many parents remain in some stage of denial for the rest of their lives. Parents who dedicate their lives to finding a “cure” for their child, or who insist on treating their child as just another “hearing” child, exemplify this reluctance and inability to constructively accept the reality of deafness. Consider the words of the mother of a 12-year-old deaf daughter: “At first I felt like I had died, and then it became clear that a big part of me had died and would never live again.”
On the other hand, some parents describe a huge sense of relief following a formal diagnosis. This is likely because in retrospect many parents describe a significant period of delay between their own initial suspicions and a formal diagnosis.
Parents who have been told their child has some degree of hearing loss often find themselves bombarded with strong advice from both camps on how to mourn — or celebrate — their child’s deafness, which educational strategies are best, and which communication methods will be most successful. The end results are often overwhelming feelings of confusion, anxiety, guilt, fear, and desperation. Deaf parents may be somewhat pleased that their child shares a similar reality to their own.
Dealing with deafness
It’s up to the parent to somehow resolve the overwhelming feelings following diagnosis and mobilize resources for the years ahead. The many options facing parents with a deaf child include the type of communication the family will adopt:
• American Sign Language which is a language system that is completely visual rather than auditory. It is considered the natural language of the Deaf community;
• Auditory-verbal which emphasizes the use of residual hearing with assistive devices to develop spoken communication;
• Cued speech which allows access to spoken English through a system of eight hand shapes made in four locations near the face to assist in lip-reading;
• Homemade gestures or signs while using spoken English;
• Total communication, which is signing corresponding with spoken words. It combines auditory and visual information by providing appropriate amplification, and using speech reading and sign language simultaneously;
• A combination of any of the above.
Parents will be inundated with literature, Internet information and professional advice, but ultimately, they must decide for themselves the best way(s) to communicate with their child. Parents of a newly diagnosed child should talk with other parents, experience options first-hand, and use all sources of information. Parents must also be diligent in assessing and re-assessing their choices, and be ready to adapt when necessary.
Cathy Chovaz-McKinnon is a clinical psychologist in London, Ontario. She is deafened, but considers herself bicultural, functioning in both hearing and non-hearing environments.
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