Ella’s Story

My Family Story

Interviewer: Amy Ho
Subject: Ella Jiang

“What does a ladybug eat?”
“Why can it fly?”
“Why does it crawl like this?”
“Will its parents cry when they can’t find it?”

These were some of the questions that came flying at me from my 6-year-old daughter Veronica after we found a ladybug crawling on a cob of corn and put it into a glass jar. It was getting close to her bedtime so I suggested that she get her older brother to help her search for answers on the internet the next day.

Three years ago, I would never have imagined Veronica being able to articulate and carry on such a conversation with me.

Anxiety

Veronica was born in May 2012. She passed the newborn hearing screening test for her right ear but not the left ear while she was in the hospital. Two weeks later, we went for a follow-up hearing test and were told that she had passed the test.

I put Veronica in an in-home daycare when I went back to work full-time after my maternity leave was over. Then, when Veronica was a little over two years old, the in-home daycare worker told me that Veronica did not respond when the worker called her from behind. She also noticed that although she played well with other children, she didn’t always respond to them and sometimes ignored them.

At the time, I did not associate such behaviour to her hearing. She was speaking only one to three words at the time, so I thought she was just a late speaker. In any case, I took her to see our family doctor, and asked for a hearing test.

At the appointment, the family doctor took out a pair of rubber gloves. He first blew into the gloves, then walked behind Veronica on her right, and squeezed the glove, which produced a screechy sound. Veronica turned to the right. He then moved to her left side and did the same action. Veronica then turned to the left. The doctor then told me that Veronica was fine; no hearing test would be needed.

Fine, I told myself. There was no history of hearing loss in our family. Why should I think that Veronica’s behaviour was related to her hearing? The doctor said she was fine, so there was no need to worry.

About three months later, the daycare worker again expressed her concern to me that Veronica was not responding or developing language in the same way as the the other children. And she encouraged me to ask for more testing. I took Veronica back to the family doctor. Once again, the doctor made a loud noise behind Veronica, and once again she responded. The doctor repeated the prognosis that her hearing was fine and no hearing test was needed.

A few months went by, and Veronica was nearly three. When I told the in-home daycare centre that I was planning to switch Veronica to a community daycare centre, the worker expressed her concern again, and suggested I take Veronica for a speech/language assessment at the local health clinic; she had learned from a radio interview that assessment and speech therapy would be free for a child under five years old.

I followed her suggestion and took Veronica to see a speech language pathologist (SLP) at our local health clinic. The SLP referred Veronica for a hearing test right away, and we got an appointment two months later. The audiologist, who also speaks my native language, showed me the hearing test results, and told me that Veronica needed to wear hearing aids to help her hear and to learn to speak.

The news was a great shock to me! I was crying as the audiologist was explaining the results to me. I did not absorb much of what she said except that Veronica needed to wear hearing aids.

No, this could not be true! I was determined to get a second opinion, perhaps unconsciously thinking that it might change the diagnosis. I immediately purchased air tickets for us to my home country so that we could see an Ear Nose and Throat (ENT) doctor there. Veronica had a sedated ABR at the hospital and her hearing loss was confirmed. She would indeed need hearing aids to help her hear.

Struggle with Hearing Aids

Veronica was already three years old when we put hearing aids on her. It was a struggle every day to keep them on. First, she had a skin allergy to the material of the ear molds. She would scratch her ear so badly that she would get an infection. The ENT doctor at BC Children’s Hospital then recommended switching to a different material for the ear mold, which solved the skin allergy problem.

Veronica still resisted wearing her hearing aids. She took them out, hid them, or threw them on the floor and stepped on them. One time when we were out, she threw such a temper tantrum that she pulled out the hearing aids and threw them into the street while a car was passing by. I was frantic! What if the car ran over the hearing aids and crushed them? After the car left, my son and I searched for the hearing aids and found them in the middle of the road. Thank god the hearing aids were not damaged!

I wasn’t able to control my emotions in that moment. I scolded Veronica and yelled at her that she almost damaged her hearing aids and then she would have had nothing to help her hear. Then we both burst into tears and hugged each other while we were crying, right there in the middle of the street.

Helpful Tips

I went to the audiologist to seek help. The audiologist was very helpful and patient. She suggested the following strategies to me:

  • Start by putting on the hearing aids in a quiet environment so that sounds will not be too loud all of a sudden.
  • The sound of flushing the toilet can be unpleasant to the aided ears. So avoid flushing the toilet or having the child nearby when she has just put her hearing aids on.
  • The sound of moving furniture such as chairs on a hard floor can also be unpleasant. So avoid moving furniture when the child is nearby.
  • The noise of cooking in the kitchen and the ventilation fan can also be unpleasant to the child. Try not to have the child in the kitchen when she has just put her aids on.
  • When the child is watching TV with hearing aids on, start with a low volume, and gradually turn it up to a level that is comfortable for the child.

Gradually, Veronica got used to wearing her hearing aids. Eventually, she even refused to take them off when she went to bed. Everything was going so well!

A year later, Veronica lost her hearing in one ear, and we decided to get a cochlear implant for her. It was a challenging few months as she got used to the implant. She cried for two months or so and refused to go to school because she said the teacher sounded too loud, and she did not like to hear the teacher’s voice.

Again, I got help from the audiologist. The BC Children’s Hospital audiologist fine-tuned the programs on the implant. She also suggested that when first putting on the sound processor, set the volume at a low level for two minutes, then gradually turn up the volume.

The teacher at the specialized preschool was also very patient and helpful in getting Veronica used to the cochlear implant. She told Veronica to raise her hand anytime she found the teacher’s voice too loud, and she would lower her voice so that it would be comfortable for Veronica.

Support for Parents

When Veronica‘s hearing loss was confirmed in mid-2015, I was very sad and confused. I didn’t know what to do. I felt like a small boat drifting on the ocean, a boat that might sink at any time. I was grateful that I was connected with a Guide By Your Side Parent Guide, who also speaks my native language. She is caring, supportive and knowledgeable. She listened to me, shared family stories and talked over different options with me. She also sent me relevant information to help me make an informed decision.

The Parent Guide also encouraged me to attend some BC Hands and Voices (BCH&V) events. I had never met an adult with hearing loss before but I was introduced to Deaf and hard of hearing adults at BCH&V workshops. To watch and listen to their presentations and panels, I learned that people with hearing loss can become successful professionals. I also learned valuable advice from other parents’ experiences raising their older D/deaf and hard of hearing children. These veteran parents’ stories gave me hope and encouragement and taught me that the most important element is how the parent nurtures the child.

BCH&V has helped our family in other ways. I find that Veronica is happier, more confident, more willing to express herself and communicate with others after joining in at BCH&V family events like the fun family picnic each June. BCH&V gave me travel assistance to attend a workshop at a time when I was not mobile and in need of help. They also provided a volunteer Chinese interpreter so that I could understand the presentations and discussions in my mother tongue. All of this combined boosted my confidence that I can help my child to have a bright future.

Balancing My Time Between My Children

Veronica’s brother is more than 10 years older than she is. For the last three years, I was so focused on Veronica’s hearing and language development that I must admit I feel I neglected my son for quite some time. I did explain to him that I cared about him but his younger sister needed me more during her early years. I thought my son would understand until one night last year he burst out that I loved Veronica and did not love him. I was in tears and so was he. I told him over and over that I love him as much as his sister.

Since then, I constantly remind myself to give more of my attention to him, as well as include him in Veronica’s events and appointments. I know he will help Google search for the answers to Veronica’s questions about the ladybug.

The Next Stage

Veronica has just started Grade 1 at a new school; our neighbourhood elementary school. She is excited and, while I still feel a little nervous about her being in a totally new learning environment, I am confident she will be able to do well. I also feel assured that she will not feel lonely there as her best friend, who is also hard of hearing, is going to the same school.

Looking back, I feel we have so many blessings. I have so much appreciation for all the professionals and other families we have met along our hearing journey, who have done so much to help Veronica and our family to reach where we are now.

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