One Family’s Journey
Ladybug Questions
By Ella Jiang, British Columbia H&V
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?”
My six-year-old daughter’s questions came flying out after we found a ladybug crawling on a corn cob and put it into a glass jar one evening. Three years ago, I would never have imagined Veronica carrying on such an exchange with me.
Born in the spring of 2012, Veronica passed the newborn hearing screening for her right ear but not her left ear while she was in the hospital. Two weeks later, when we returned for follow-up screening, she passed.
Does She Hear or Doesn’t She?
I put Veronica in an in-home daycare when I went back to work full-time after my maternity leave ended. When Veronica was just over two years old, our provider told me that she didn’t think Veronica heard when called from behind, or responded to the other kids when she played with them.
At the time, I did not associate such behaviour with hearing. She was speaking only one to three words at the time, so I thought she was just late developing. In any case, I asked for a hearing test at a visit with our family doctor.
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-balloon, which produced a screechy sound. Veronica turned to the right. He then moved to her left side and did the same action. She turned to her left, and the doctor said her hearing was just fine and no further testing would be needed.
Fine, I told myself. There was no history of hearing loss in our family. The doctor said she was fine, so there was no need to worry.
Three months later, our provider repeated her concerns about Veronica’s language development. I took Veronica back to the same family doctor. Once again, the doctor made a loud noise behind her, and once again she responded. He sent us back home without further testing.
A few months later, when Veronica was nearly three, I was planning to move her into a community daycare. This time, our provider suggested a free assessment she had heard about at a local health clinic for children under five years of age. I took Veronica to see a speech language pathologist (SLP) there, who immediately referred us for a hearing test. Two months later, I sat with the audiologist, who also spoke my native language, as she went over the test results. Veronica needed to wear hearing aids to help her hear. The news was a great shock to me! I cried as the audiologist explained the results. I did not absorb much of what she said except that she needed 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 tickets for us to fly to my home country to see an Ear Nose and Throat (ENT) doctor there. Veronica had a sedated ABR at the hospital and her hearing loss was confirmed.
Struggling with hearing aids
Veronica was already three years old when we put on the first hearing aids. At first, it was a struggle every day to keep them on. She had a skin allergy to the ear mold material, and would scratch her ear so badly that she would get an infection. The ENT had us switch to a different ear mold material, which solved the first problem.
She took the aids out, hid them, or threw them on the floor and stepped on them. One time, she threw such a temper tantrum that she threw the aids 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 aids, and thankfully, found them, undamaged. I wasn’t able to control my emotions in that moment. I scolded Veronica, saying that she almost damaged her hearing aids and then she would have had nothing to help her hear. We both burst into tears and hugged each other, crying, right there in the street.
Helpful Strategies
I returned to the audiologist to seek help. She suggested the following tips:
Start by putting the hearing aids on in a quiet environment so that sounds will not be too loud all of a sudden.
Many sounds can be unpleasant as the hearing aids are first put on, such as flushing a toilet, moving furniture or chairs on a hard floor, and the noise of cooking and fans in the kitchen. Try not to put hearing aids on in these conditions.
If watching TV, start with a low volume and gradually turn it up to a level that is comfortable for the child.
With persistence and patience, Veronica got used to wearing her hearing aids. I was thrilled the day she 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 processor. She cried often and refused to go to school because the teacher sounded too loud, and she did not like to hear the teacher’s voice.
Again, I got help from the audiologist. The programs on the processor were fine-tuned and she suggested gradually turning up the volume over two minutes when putting it on each day. The teacher at the specialized preschool was also very patient and helpful in getting Veronica used to the cochlear implant. She asked Veronica to raise her hand anytime she found the teacher’s voice too loud, so she could lower her voice and make Veronica more comfortable.
Support for Parents
When Veronica’s hearing loss was finally confirmed, I felt like a small boat drifting on the ocean, a boat that might sink at any time. I was grateful to meet a Parent Guide from BC’s Guide By Your Side program who also speaks my native language. She listened to me, shared family stories and talked over different options with me, sending me relevant information to help me make informed decisions.
Attending events with other parents at BC Hands & Voices also helped me meet Deaf/hard of hearing adults at the workshops. I learned that our kids can become successful professionals. I also learned valuable advice from other parents’ experiences raising their older D/deaf and hard of hearing children. These stories gave me hope and encouragement. I learned the most important element is how the parent nurtures the child.
I find that Veronica is happier, more confident, more willing to express herself and communicate with others after joining in at events like the fun family picnic each June. We even got travel assistance to attend a workshop at a time when I needed it, and the Chapter connected me with a volunteer Chinese interpreter so that I could understand the information in my mother tongue. All of this boosted my own confidence to believe I could help my child to have a bright future.
Balancing Time Between Children
Veronica’s brother is more than 10 years older than his sister. For the last three years, I was so focused on Veronica’s hearing and language development that I feel I neglected my son for quite some time. One night, 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. It was difficult to give her the time and effort when she was so behind and still help him feel loved. Since then, I constantly remind myself to attend to his needs and include him whenever possible. 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 to be with a best friend who also has hearing loss. While I am a bit nervous about the totally new learning environment, I am confident she will be able to do well.
Looking back, I feel we have so many blessings. I so appreciate all the professionals, families and Deaf/hh adults we have met along our journey who have done so much to help Veronica and our family to reach where we are now. ~
Editor’s note: This article came about through an interview with Ella Jiang by Amy Ho, BC Hands & Voices. Note some spellings and usage are common to BC.
H&V Communicator – Summer 2019