World Hearing Day (March 3, 2019) takes me back 29 years to the day that my youngest daughters were born. It was on March 4th, 1990. My pregnancy was uneventful, except for finding out that I was carrying twins! Despite the challenge of delivering twins, I had no epidural and was fully present for the miraculous double birth. The girls were simply angelic like their two older sisters. We left the hospital on schedule a few days later and began to juggle life with four children under five years old, including twins. Like anyone else.
Our home was so full of activity that I did not notice that there may be a hearing problem. There is no history of hearing loss. We are a bilingual household, which could explain a delay in speech development. The girls both passed a basic hearing test at the Mother and Child clinic at nine months, and we were on our way. Only at the age of 2.3 years old did we suspect that there was something not quite right as they were not speaking yet. We encouraged our pediatrician to recommend a hearing test where we were told that both girls had a profound hearing loss. Life as we knew it was over, we were about to begin a new journey.
Because of the late diagnosis, we had lost precious time for teaching our girls spoken language. Fortunately for those two out of 1,000 babies born with hearing loss, this need not happen today. Since the diagnosis of my children, I have learned a tremendous amount and have been privileged to share my experience and the knowledge that I have gained with hundreds of families and professionals in Israel who work with children with hearing loss.
In Israel, early diagnosis of hearing loss is accessible thanks to the Universal Infant Screening Test required by the Ministry of Health since 2010. The necessary technology for helping children with hearing loss to hear is available (cochlear implants, ABIs, digital hearing aids, personal FM systems) and is subsidized, if not totally covered, by the government. These are two of the three components necessary for realizing what is possible for children with hearing loss today.
“When children are identified early, receive hearing technology and family centered support, they can develop language on par with their peers.” (AG Bell Position Paper, Association for the Deaf, 2016)
But what is the best way to maximize the early application of hearing technology to learn spoken language? After all, over 90 percent of children born with deafness are born to hearing parents who overwhelmingly want their children to be part of their natural family life. The approach to habilitation that I came to know that makes this goal of inclusion and typical speech and language possible is the Auditory-Verbal approach. I use the world habilitation rather than rehabilitation because rehabilitation refers to regaining lost skills or functioning while habilitation refers to services for those who may not have ever developed the skill, like children born with deafness who never learned to hear and to speak.
The Auditory-Verbal approach says that with the best technology, early intervention with parents as full partners in the habilitation process, and inclusion in regular educational frameworks, children with deafness can learn typical spoken language and lead full and creative lives in the hearing world. They can learn to listen and to speak on a language level on par with their siblings, neighbors and peers. They can go on to higher education and choose meaningful professions for gainful employment. When I meet new parents I tell them, after expressing sincere empathy for the sadness and shock of the diagnosis, thanks to all that is available, this is the time to be deaf!!!
What is missing in Israel on a national scale to ensure that children with deafness can become all that they can be is the last component of the triad of habilitation, the family-centered support program, a reference to the Auditory-Verbal approach to habilitation of children who are deaf that places parents as partners in the habilitation process from the outset.
It is becoming clear that without a national reassessment of the most effective methods to teach children with hearing loss spoken language and massive professional training, children diagnosed with hearing loss in Israel will not be able to truly maximize their potentials. The auditory-verbal method is not widely available for reasons that are hard to explain. The times have changed for children with hearing loss, and yet the old attitudes and stereotypes about deafness and marginality are still prevalent.
In order to be able to offer families throughout the country the opportunity to help their child with hearing loss learn spoken language on a level that is on par with that of his siblings and peers, Israel needs many more speech therapists and educators trained in the AV approach.
Each child with hearing loss and his/her family deserves to live an independent and rich life in the hearing world. It is possible. It was possible for children born in 1990 like my own girls, but it is so much more accessible today.