A Parent’s View about Getting CI’s At Later Than The Optimal Time

Today’s blog is written by  Lydia Gregoret. She is an audiologist, scientist, teacher, and parent of two sons, one of whom is deaf and hears with cochlear implants. She began her career in academic research in the field of biochemistry and biophysics studying the “protein folding problem.” When her children were of school age, she focused on raising them and helping her younger son learn spoken language. The wonder of cochlear implants inspired Lydia to go back to school for her AuD. She now combines her basic science background and Audiology degree in the R&D group at Lantos Technologies where she helped develop direct ear scanning. Lydia has taught chemistry, biochemistry, and bioinformatics at the University of California, Santa Cruz and at Brandeis University and audiology (Implantable Devices) at Northeastern University.

When Cochlear Implants Don’t Happen at 12 Months

On chat sites and Facebook groups for parents of children with hearing loss, occasionally one sees a question like, “My child is 2 ½ years old. Is it too late for her to get a cochlear implant?” While it is wonderful that there is awareness that early implantation often leads to superior outcomes, it wasn’t that long ago that children could not get a cochlear implant before two years of age because implantation candidacy criteria were more strict.

Today’s deaf young adults who are thriving in mainstream society utilizing spoken language are finishing college or grad school or have launched productive careers did not receive a cochlear implant until two, three, four, or even five years of age. 

My 22-year-old son, Jeremy, is among this group. At his mainstream liberal arts college, he has many close friends and is well-immersed in the community of his academic department, working as a tutor and as a lab assistant. As a parent this is tremendously gratifying, since there were several years after his hearing loss was discovered that his future seemed like a big empty space, difficult to imagine.

My goal in this article is to share what was involved in making up for lost time with a later-that-ideal cochlear implant, and to encourage families about their children’s futures.

Jeremy’s hearing loss was discovered when he was 13 months old out of concern that he was not reaching speech and language milestones and not reacting to loud sounds at his daycare. Universal Newborn Hearing Screening was not yet mandated in our state, though legislation was signed the very month the severity of his loss was determined and he was fitted with hearing aids. My husband and I quickly sprung into action to make up for lost time and figure out how to communicate with Jeremy. 

Jeremy didn’t reject his hearing aids and was content to wear them all day long, but at the same time, he didn’t appear particularly attached to them either. Concerned that a purely oral or auditory approach would not give him the language his ears couldn’t provide, we chose a Total Communication strategy, using signed English and spoken English simultaneously. Jeremy picked up signs very quickly and vocalized, though his speech consisted almost entirely of vowels — probably all he could hear.  Was he a cochlear implant candidate? Probably, had we pushed it, but at the time, candidacy criteria for cochlear implants were stricter, and the thought of surgery for me was scary: he was getting “some benefit” from his hearing aids, after all…wasn’t he? 

When Jeremy entered preschool at age 3, he was signing in sentences, but his understanding of speech alone was lacking, and producing speech was a challenge.  The director of his preschool, who had studied with Daniel Ling and trained in auditory methods, nudged me towards getting Jeremy evaluated for a cochlear implant, which we pursued, along with enrollment in a auditory-oral school where we could focus on developing his listening and speaking skills. Jeremy’s cochlear implant was activated just a few days shy of his fourth birthday.

He can hear! Now what?

Back home from the clinic, Jeremy sat down to eat some corn chips.  On his first bite, a surprise: “I hear that!” he said and signed. Funny what I had taken for granted. I didn’t realize he had never been able to hear crunchy food before.  I should point at that although he had not been able to hear chewing sounds before he got a cochlear implant, through his experience with hearing aids, he understand the concept of sound, and was able to quickly deduce its source.

Depending on a child’s hearing history, another 4-year-old may need more hearing experience before being able to accomplish a similar feat.  Similarly, a four-year-old with less-developed language may not yet be able to communicate surprise at such an experience.

With his implant activated, Jeremy had several tasks ahead of him, among them to learn to listen and to learn to speak.  It was only over a period of time that I learned how one (listening) comes before the others (clear speech). I was tempted to measure progress only by the sounds he could say.  There was a whole lot going on in his little head as he was putting together the new sounds he was hearing, connecting them to signs he had learned that were paired with sounds. 

One morning about a year after he got his CI, he was trying to tell me something about somebody and I was not understanding who he was talking about. He became frustrated, stamped his little foot, and signed, “HAIRCUT!”  Ah-ha! The person he was talking about, was our neighbor, Erika! Admittedly, “haircut” and “Erika” do sound similar. It wasn’t the easiest name for him to pronounce either. It would take another year and a half before he would master the ‘k’ sound. (I still smile at the concept of a person with the name, Haircut.)

Words and Meanings

While Jeremy was making rapid progress now, his conversational skills were still quite far behind typical 5- and 6-year-olds.  At the playground I would watch and wonder, will he ever catch up? 

We elected to have him stay an extra year in preschool. In addition to focusing on listening and talking, his school had a strong emphasis on language.  These preschoolers had daily homework! Or, rather, their parents did. Each day, students had to bring a page of “news from home.”

This “news” had to be connected to the language theme of the month. For example, during furniture month, each day, each child’s family would have to create a page about a piece of furniture. You might cut out a picture of a coffee table from a magazine or print a photograph of the child with a coffee table and write a sentence or two about the coffee table, working together with the child.  At circle time, the child would present their news from home with the teacher’s help. It seemed relentless at the time, but was remarkably effective for building vocabulary.

Ten Books a Day

Another parent told me their child’s auditory-verbal therapist prescribed reading 10 books a day aloud. This is terrific advice, since most parents already know how to read to their children. If one did nothing else, reading aloud and discussing the story is a great way to bulid a child’s language and vocabulary without it seeming like deliberate work. 

Jeremy developed a passion for a particular line of Lego toys called Bionicles.  These were robot-like characters, and the toy line included comic books and chapter books. Reading these books aloud to Jeremy was a popular activity.  There were many new words in these books, and many breaks for explanation were required (“A steady stream of clouds flowed through the chasm, obscuring Vizuna’s view.”) His deep interest in the stories was so motivating, it made him want to figure out the meanings of the words in them. By the time he was seven years old, his speech and language finally came smoothly.

Second implant revelations

After receiving his cochlear implant, Jeremy continued to use a hearing aid in his opposite ear.  He was quite ambivalent about it, and we made a deal that he did not need to use it on weekends. When he was 8 years old, he got a CI in his other (left) ear as well.  At this age he was able to explain how hearing with the CI was different than what he heard from the hearing aid. He told me that the hearing aid sounded like someone speaking while clamping their hand over their mouth, but with the CI he could “really hear!” 

Learning to listen with this new “baby brother” ear, as his audiologist called the new CI, we took some time each day without the original, right ear processor

At twelve, he gave an interview to a young adult CI user:

https://youtu.be/nN-8XLJ5B2Q

*featured image source Wikimedia commons