For Parents, School and Health Care Professionals, Interpreters, and Deaf/Hard of Hearing Individuals
Carolyn R. Stern, MD, Family Physician
In The Beginning…
There is a well known short narrative, called “Welcome to Holland,” By Emily Perl Kingsley. It is a metaphoric story about what it is like to have a child with a disability. Basically, you may have planned all your life to travel to Italy, but when the plane lands, you end up in Holland. Now, you need to learn a new language, culture, and learn about available resources for your stay in Holland.
This story is a wonderful way to understand having a child or a patient who is Deaf or hard of hearing. It is a new experience for all, not only for the parents, but for the health care professional, the school, and even for those who work in the deaf and hard of hearing community, since every child is different. So much so, that even the interpreters and the auditory professionals who work with Deaf and hard of hearing children, it will be a new experience for them as well.
Throughout my own life experience and my medical practice, I have found that only one thing is certain. There is no one single communication approach that works for ALL children who are Deaf or hard of hearing (D/HH).
I have seen successes and “failures” of all modes of communication. If anything, those who claim “their method is the ONLY way,” must realize that what worked for their child or family member may or may not work for others. As health care providers, we must provide a supportive environment for parents, Deaf and Hard of Hearing individuals, school and allied health professionals to succeed.
When I was 8 months old, my grandmother was concerned that I had a hearing loss. When she spoke to my pediatrician at the time, he did some cursory “hearing tests” (they did not have the technology they do now), and told my grandmother that she had nothing to worry about, that I was just “slow.” When I was 14 or 15 months old, I was formally tested at Jackson Memorial Hospital in Florida. There, the providers were convinced that I did not have many options in my future due to my severe to profound hearing loss. Thank goodness my parents had enough sense not to listen to just one opinion!
Since that time, I have experienced many sides of the hearing loss pendulum and educational philosophies that have ensued. I had a severe to profound hearing loss and was largely “hard of hearing” until I was 25 years old. I then became Late Deafened, due to Ménière’s disease or a viral neuritis. After receiving my cochlear implant in 1991, I then became immersed in the Deaf community, became fluent in American Sign Language, and have since devoted my medical practice to working with Deaf and hard of hearing individuals, interpreters and health care providers to improve access, self advocacy, and health education for the Deaf and hard of hearing community.
What Does This Have to Do With Communication?
I have seen successful families of hearing parents with deaf children, who don’t have cochlear implants, as well as successful families of hearing parents with children who have implants.
I have seen parents use the auditory verbal method with success, and those that have used American Sign Language and cued speech with success.
I have seen children who have succeeded with one method, two methods, or more. I have also seen children who have never learned to become independent individuals.
I have seen wonderful health and school professionals who have helped guide parents through the maze of options, as well as those who staunchly believe that there are no other options available.
I have also seen the health professional who insists that every deaf child receive a cochlear implant, even if the child was seeing the doctor for a sore throat.
I have seen schools that have provided truly equal access to education and information. I have also seen schools who feel that a sign language interpreter (whether they are certified as an educational interpreter is another story) just for academic classes and not for sports or other school events, constitutes adequate access.
I have seen excellent interpreters with a strong desire to pursue and continue their education, as well as interpreters who take on jobs they are not qualified for.
Take Home Message
The message, then, to parents, interpreters, school, and health professionals, as well as to deaf and hard of hearing individuals, is to listen. Listen to yourselves, pay attention, and learn from each other. Learn what works as well as what does not work. Network with others and seek a support system that meets your needs. Learn and continue to learn more!
What About the Research?
There is much research on education of the Deaf or Hard of Hearing child. Much of the research is based on small sample sizes, and may or may not be where your child is at that point in time. Be careful where the research comes from. Just like a medical device or drug, if the research comes from the same place that the drug or device is manufactured, there will be bias in favor of the device or drug. Likewise, if the research is done on a Deaf child from one “school of thought,” without an unbiased “control group,” you need to be careful what the research espouses.
You need to ask yourself, does the research happen over a long period of time or just at one point in the child’s life? Does the Deaf or hard of hearing individual involved in the research have the opportunity to participate and comment on the research done, or is it purely from the professional perspective?
What works well for one individual may or may not work for others. Even if there is not ONE communication approach that works for everyone, language and ACCESS to language is critical for success. In addition, no one works in a vacuum. Teamwork engenders success.
OK, but what are the questions I need to ask? What will be important to my deaf or hard of hearing child as they go through life? I have listed some questions to help you monitor your child (or patient) so you can keep track of success.
These questions will be a good resource if you need to detour from your current path or method. Flexibility, knowing your child’s personality, personal and other attitudinal issues, and self determination are important factors with these questions, as the answers may change daily, monthly, or even yearly!
* Is the child’s language appropriate and at an expected level for age?
* Does the child have adequate vocabulary and communication methods to be able to express themselves fully (physically, emotionally, etc.)?
* Does the child have resources to access information and understand what is happening at any point in time?
* Does the child have good language models, from parents, caregivers, deaf or hard of hearing role models, family members, regardless of whether the language is signed, cued, or spoken?
• Technology and Education:
* Is your IEP and home communication plan ready? For example: Are visual alerts, assistive listening devices, hearing aids, implants, communication modes, teacher and allied health professional supports, interpreter services, etc. are effective and continually reassessed as time goes on?
* Is the educational setting and teacher(s) appropriate for the child? Is the child able to succeed physically, emotionally, and socially at each grade level?
* Does the child have friends? Are these relationships superficial or are they able to develop into real experiences? Are they supportive or unsupportive? (Note: we all need to learn from both supportive/unsupportive individuals, but this emphasis is on “most” of the child’s friends or peers)
* Is a transition plan in place as the child moves from grade to grade? What about higher education and available support systems?
* Are future career options and opportunities and role models available for the child?
• Medical and Allied Professionals:
* Do the health care professionals and other service providers work with you, support your decisions and ask you and your child questions about your needs?
* Are they comfortable with you, address the current concerns (both medical (sore throat) and hearing related), and teach you to recognize critical cues?
* Are you able to seek a second opinion if you need one?
* Are they aware of deaf or hard of hearing issues, culture, language and communication modes or options? If they aren’t, do they know where to get the information you need?
• Personal and Family:
* As a parent or family member, are you able to let the child make their own decisions and mistakes, and learn from experience? Or do you intervene whenever and wherever possible?
* Does your child or family member understand that they are loved and accepted for what they are, and not as a “defect” in the family?
* Do you have a good support system or network to find available community resources to help now and in the future?
This is just a starting point or guide. The questions you need for your child or client may be different than the ones mentioned here. These have been helpful for me, as well as other families and health professionals I have taught and mentored over the years.
Good luck, and enjoy your stay in Holland!