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Your Child is Deaf or Deafened – What to Do?

It is a very scary experience for any parent not familiar with hearing loss to find out that their child is deaf or deafened. Over 90% of deaf children are born to hearing parents. It is natural for hearing parents to want their kids to be like them and share their language. Their first thought would be to have their hearing fixed.

There are great technologies like hearing aids and cochlear implants, and there are many deaf and hard of hearing people who use them and can speak and lipread. However, those are not the only options that the parents should explore for their children before making a decision. And taking advice only from an ENT (Ear, Nose, Throat) specialist or an audiologist is not always a good idea.

I would like to share with you my personal story as well as a story of a hearing parent of a deaf kid first before referring you to a great organization who provides an unbiased advice about all communication options for deaf/hoh children.

Nobody in my family has history with deafness. I was born with normal hearing and lost it at the age of 2 from meningitis that left me profoundly deaf in both ears (at about 110-120db). All I could use to hear were hearing aids that gave me little benefit. Cochlear implants were not an option back then (I got one only later as a college student). In terms of communication, a speech therapist banned my mother from using even fingerspelling with me along with speech and claimed that it would “delay” my speech. Thanks to the therapist, I could speak again and my family could understand me. Unfortunately, the lack of access to spoken language via visual means (at least fingerspelling) caused a significant delay in my language because I could not understand my family and learn more new words to increase my vocabulary (especially that I had no benefit from hearing aids).

My language gap was closed only when I spent the first 4 years in a school for the deaf where I learned sign language for the first time and used it to communicate with teachers and deaf classmates. It was based more on fingerspelling and grammar of a spoken Russian language and included some commonly used signs. So it gave me a direct access to Russian and helped me increase my vocabulary rapidly. I was also very fortunate to have a teacher who made me become a voracious reader. She spent some time after school with me and my deaf classmates to discuss a book and express our thoughts in our own words via sign language. The rest is history.

Although my family doesn’t sign with me (only my sister knows fingerspelling in case I don’t understand some words), they still make sure I don’t feel left out from their conversations and support all communication modes I use.

For me personally, the most important thing for a deaf person is to have a proper language access (let it be via listening/speaking or cued speech or sign language or a combination of some or all modes). Also, I don’t care if a deaf person can speak or signs only as long as s/he has a good command of a written language. Literacy is very paramount for deaf people. It can be improved any way and not necessarily through hearing – I learned 3 spoken foreign languages and became fluent in English without any access via hearing!

Another thing to consider is that just hearing is not enough – it is also important to be able to interpret sounds of speech. For these reasons, AVT (audio-verbal therapy) doesn’t always work for all deaf children, and some specialists even encourage parents of deaf kids with hearing devices to combine listening and speaking with cued speech and/or sign language.

There are many stories similar to those of my generation growing up deaf or hard of hearing. Even more hearing aid and cochlear implant users enjoy learning and using sign language and/or cued speech and benefit from visual communication modes.

A hearing mother shares her story of a deaf son (who has a cochlear implant, can speak and discriminate speech well, and is fluent in Cued Speech and sign language) in her excellent article, Cued Speech and ASL—Why I Use Both.

After reading that mother’s story, I hope you understand why there are so many controversies and biased opinions about the benefits and limitations of various hearing technologies and communication modes that may be confusing and overwhelming to those new with hearing loss. For these reasons, Hands and Voices was created as a non-profit organization to help families of deaf children by offering unbiased advice about communication options. I would encourage you to check that organization and explore all options before making the informed decision.

Following are 3 videos explaining various communication tools that are important to be used with deaf kids:

Cued Speech

Sign Language

Early Childhood Education

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