Our Journey with Hearing Loss...

At the tender age of 8 months, after several inconclusive hearing screens, our precious little boy was diagnosed with hearing loss. He was profoundly deaf in both ears. The day of his diagnosis is forever imprinted in my memory. I was stressed and tired, the logistics of transporting two medically fragile babies(twins)to doctors appointments was challenging. The results of his hearing tests, so conclusive and solid, hit me like a ton of bricks. I was told he had to be fitted with two of the most powerful hearing aids. Surely not? He was so little. They looked so huge on his ears. He looked at me with bright eyes, he understood everything.

Our biggest struggle was keeping our little boy's hearing aids on and stable. We found the ear molds dislodging frequently and the result was a screaming baby who wanted everyone to stop fiddling with his ears. We knew how important it was for him to wear them often. We knew the importance of early intervention. It frustrated me that my baby's one chance to access sound dangled on an ear hook and retention cord.

Early Intervention

We tried ear clips, a bonnet(so old school), wig tape, etc until we finally discovered a simple headband. It worked! His audiologist even took pictures to show to other parents. This is what you should know! Anything that may work for you and your child is likely to become useful knowledge to other parents. Keep thinking creatively and experimenting.

After almost a year of wearing hearing aids, my son was finally considered a candidate for a cochlear implant. The two technologies differ vastly. Hearing aids work by amplifying the residual hearing, while a cochlear implant replaces the function of the cochlear. It's not an actual cochlear that is implanted, its a thin metal strip that coils around the inner cochlear. With hearing aids, you would still use your natural hearing, just amplified(in my sons case super amplified) but this means that background noises are amplified too. Sometimes it becomes difficult to filter out the background noise for a child born deaf. For severe to profound deaf children, who wear hearing aids, speech discrimination could become challenging.

A Story of Hearing Loss

Lessons learned from parenting a child with hearing loss.

  • No one child's journey is the same as another. Every family is unique, every deaf child has unique abilities. Access to language will vary from family to family. Some prefer sign language only, others prefer to speak and some prefer a combination of both.

  • In terms of speech and access to sound, no one answer is the right answer. The right answer is what works for your child. This may include a single intervention or a combination of several.

  • The choices you make for your child are not set in stone. Life changes, children develop, their talents emerge, their needs change and so to can their mode of language acquisition and/or access to sound.

  • Language and speech are different things. Do not let anyone tell you that your child will become "lazy to listen" if their use sign language. The benefits of early language acquisition are enormous. Teaching a child two languages makes then bilingual(it does not make them anything else).

  • Work on establishing communication early. With my son we started with a AAC, moved onto sign language, then sign-assisted English. Beginning at age 2 (even before the cochlear implant) he had a say in what he wanted for breakfast and we often had a happy start to the day.

What is a Cochlear Implant?

A cochlear implant replaces the function of the cochlear. Instead of the fine, hair like cilia, a tiny metal strip containing 22 electrodes stimulates the auditory nerve. Speech discrimination is possible because the frequencies can be adjusted to suit the wearer's comfort. The child hears, but he hears differently. He is still deaf and requires certain accommodations for hearing loss. Persons with cochlear implants work hard to listen, their brain works overtime to differentiate(pick out speech or attach meaning to sounds). They tend to tire easily. They may regularly rely on lip reading, facial expressions or visual clues to piece the sentence puzzle together. The cochlear implant is not a cure for hearing loss. It is the best technology for access to sound, and its wrong for someone to say, your son can hear now. It more complicated than that. It's important for me to share this with those who may not know any better. Awareness brings understanding and knowledge is power.

He is a deaf child that toggles between the hearing and the deaf worlds so seamlessly. He observes everything and he often guesses the rest. He is most comfortable with sign language and whether he can hear you or not, he speaks back to you. He is bright as a button and we wouldn't change him for the world.

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What are Augmentative and Alternative Communication (AAC) Devices?