For hearing parents who have deaf children the initial response is similar to those identified as the five stages of grief. But with the right support and knowledge, parents can move through these stages in an efficient and effective manner.
Deafness can present itself from birth as a result of congenital hereditary interactions or any time thereafter due to a variety of disease processes ranging from meningitis to severe infections of the inner ear (cochlea). In the case of congenital deafness, 90% of these children are born to hearing parents with no history of hearing loss in the family. A much smaller percentage of children are born to deaf parents and the issues of "coping" are vastly different. For purposes of this article, the emphasis will be on those deaf children who are born to hearing parents.
Parents should be aware of the fact that 90% of deaf children are born to hearing parents.
For the population of deaf children born to hearing parents, the diagnosis of deafness at birth is often unsettling and mystifying. With the advent of Universal Newborn Hearing Screening, these diagnoses can occur within a few days of birth and create stress and confusion for new parents. First time parents are often filled with emotional turmoil that becomes overwhelming.
Coping strategies are similar at first to the stages of grief spanning from denial to acceptance and will vary in time frame depending on the individual characteristics of the parents, the presence of supporting family members and socioeconomic status. Currently, however, resources that parents have at their disposal are far more extensive than 10 or 20 years ago. The internet provides resources with respect to online support in addition to notices of in-person groups of other parents who have been, or are presently going through, a similar experience. Technology has also now provided parents of deaf children with more options as the cochlear implant has been identified as the treatment of choice for profoundly deaf children. Hearing aid technology has progressed over the past two decades so that options are available depending upon the degree of the hearing loss.
Regardless of which device is deemed best for the infant, parents are reliant upon a cadre of professionals especially audiologists, speech language pathologists and teachers of the deaf. These individuals are there to guide them, offer support and, most importantly, work closely with the child and the family so that proper habilitative strategies can be introduced in a timely and effective manner.seeking out information both online and in person is helpful but can also be confusing.
Some parents wish only to have their child listen and speak while others prefer sign language. It is important that parents investigate the pros and cons of pursuing a distinct approach to the deafness. Try to identify a group that matches your perspective and philosophy.
As the child moves through the early years and enters the school system, parents must become advocates for their children to ensure that they are receiving the most appropriate educational experiences based on their abilities and needs. Knowledge of the processes and professionals within the school district are necessary to ensure that the child is provided with the maximal resources to foster success. This is where advice from professionals and other parents can be critical. Resources through organizations like the Alexander Graham Bell Association provide parents with support, education and interactions for those families that select listening and spoken language as their means of communications. For other families who have embraced sign language as the communication methodology, the National Association of the Deaf provides similar types of opportunities.
Since there is a timeliness to ensuring that the child can develop language (whether it be spoken or manual), decisions regarding a number of alternatives are set before the parents with an immediacy required for responding. For parents who are still in the denial stage of the deafness this can often create inordinate delays that can affect the child’s development. Parents are required to make choices for their child. The type of sensory aid, the type of therapy including whether to incorporate sign language into their communication exchanges with their child and, in some cases identifying the right professionals that fit with the philosophy they have selected are just a few of the decisions needed. These are emotional times. Parents who decide to use sign must learn the language themselves to effectively teach and communicate with their new infant. For those parents who select a listening and spoken language approach, they must learn how to present language to their child using strategies that are necessary when communicating with a deaf infant. Regardless of the modality selected, parents are in uncharted territories as they must adapt to the communication needs of their deaf infant.
Don’t let the diagnosis of hearing loss detain you from seeking the proper assistance. Parents often go through a grieving process, but time is of the essence.
Coping and support, especially soon after the diagnosis, most often comes from the professionals with which the parent is interacting on a daily basis. Their reliance upon the audiologist for the proper fitting and maintenance of the sensory device is critical to the overall process (if the parents have selected a listening and spoken language approach). The speech language pathologist must teach the parent, as well as the infant, how to respond to the auditory stimuli that surrounds them. The teacher of the deaf guides the parents in preparing the child to learn language and content from their everyday environment and eventually interfaces with the school.
Children with hearing loss all progress at different rates. Parents should make sure that the professionals following the child are evaluating him/her on a regular basis and can provide the family with concrete recommendations related to performance. Comparing your own child to another child is never a good idea as it leads to erroneous conclusions. Remember to celebrate your child’s accomplishments.
Many parents get so caught up in taking care of their child that they don’t find enough time for themselves. For example, a parent of a child who was implanted spent two hours a day driving him back and forth to the school that she wanted him to be in. During that time she worked on his listening skills. After school he had additional therapy and then once he was home she assisted with his homework. When she asked if there was anything else she could do, it was recommended that she take a tennis lesson. She just needed time for herself.
With the schedules that are often necessary to ensure that the child is receiving maximal therapy, it is important to allow your child to have fun. Experiential learning is one of the best ways of reinforcing what goes on in the classroom, but not everything has to be related to therapy. For example, you could make apple-picking a vocabulary/language experience, but only on the surface does it make sense. In the end, the only thing the child wants to do is pick apples and eat them.
The final stages of coping and support lie in training the child with hearing loss to advocate for him/herself. It is only through their own realization of their strengths and weaknesses that they will be able to make their needs known. Since most children are now educated in mainstream environments, it behooves the student with hearing loss to discuss classroom obstacles and ensure the best educational experience. With college now within every child’s reach, advocacy for their learning style becomes part of the education process. During this age of exploding technology, children with deafness have many more resources from which they can draw. Colleges offer most curricula online thus enabling those students with more challenges in classrooms a good alternative. Likewise, classrooms in higher education are now flipped with less reliance on teacher directed lectures and more on facilitative learning.
It is amazing the strength that parents demonstrate and how they take that energy and infuse it into their deaf children. These deaf infants are now young men and women who have opportunities to attend colleges and sit next their hearing peers. Many have gone on to be doctors, lawyers, teachers and husbands and wives with their own children. Their hearing losses have never defined them. That has come from parents who took what was handed to them and turned it into part of their own legacy as parents of children who were born deaf.
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