Nov 28, 2008

A Deaf Family’s CI Journey

My husband and I did not used to believe in cochlear implants (CI) until we discovered that our very own child was born profoundly deaf. It was a surprise for us. My husband and I were the only deaf members in our families. We gave our son hearing aids when he was 3 months old, but he apparently didn’t benefit enough, because he frequently took them off. He didn't even respond to a loud drum behind his back with the aids. An audiologist recommended we consider a CI, if we wanted him to have access to spoken language. I wasn't interested in it at all because the majority of what I had heard were negative stories and myths such as CI failures. I also thought the external CI device (processor) looked strange on a person's head. Many in the Deaf community probably feel the same way as I did, and I can’t blame them because I used to be ignorant about today’s cochlear implants, too.

I was pretty nervous about many important decisions that needed to be made for my child. My husband thought that our son would be fine growing up with American Sign Language (ASL). He thought he should attend a deaf school and knew he would have many deaf friends there. I, however, was concerned about the challenges he would face in the hearing community -- the same ones I had faced while growing up in a hearing family. I sometimes felt left out at the dinner table with my hearing family for example. Although I was very close to them, social times such as parties or a family reunion, proved difficult since I couldn't interact with everyone. Only some of my extended family members were willing to learn to sign or write down messages as a means of communicating with me. I also had relied heavily on ASL interpreters when I was mainstreamed at public school and college. I felt much more comfortable interacting with deaf people who use ASL and I could talk freely with them without any struggle.

It can also be challenging for me sometimes to interact with hearing colleagues at my professional job. I use ASL interpreters for group meetings and sometimes even for one on one meetings at my work. Both of our large families are all hearing and I wanted my child to be able to interact with hearing people freely and have good relationships with them, as well as neighbors and the local school students. I wanted him to be more independent in society, relying less on interpreters, and for him to be able to interact directly with hearing people using spoken English.
We also expect our son to remain part of the Deaf community, because both my husband and I -- his parents -- are part of that community. However, the number of deaf children who have received CIs in his age group has skyrocketed, because over 90% of those deaf children are born to hearing families. I'm afraid that the Deaf community, using ASL, may downsize in the future unless we start welcoming all the individuals with cochlear implants. By welcoming those who grow up with spoken English in their hearing families, there’s hope the community will evolve with that new generation instead of disappearing.

When we began investigating the cochlear implants, I saw many deaf children with CIs at a preschool who were bilingual in ASL and spoken English. This, I found interesting. I also noticed more and more deaf adults were receiving CIs. So, I started asking about this technology. I asked the parents of these children and the adults with CIs. To my surprise, most of them had positive experiences and were happy with their decisions about cochlear implants, it gave them access to spoken language unlike hearing aids. Some deaf adults with cochlear implant(s) wished that they had received a CI as a young child. I didn’t want my child to regret not having one some day.

I would rather give him a choice to either continue using or stop using the CI in the future when he’s old enough to make those types of decisions, rather than him wishing he’d gotten a CI as a child when he may have had an easier time learning to listen and speak. So I started to research CIs since we felt we had only two options for him - Option#1: CI for spoken English and ASL, Option#2: no CI, ASL only. We learned that today’s cochlear implants are much more advanced and safer technology with high reliability than ever before.

I found the CICircle parent support group on the Cochlear Americas website and joined that group. I learned a lot of new things from the group and was very surprised to hear many success stories of deaf children with CIs. I was concerned that most of those children didn't use sign language or ASL. I later learned that they didn't need it, because they were able to speak and hear well, nearly like typical hearing children. However, I still felt that they should use ASL or at least some sign language because they would have to remove the CI during shower/bath, sleep, swimming, illness, CI failure, CI external device loss, etc. I feel like ASL/sign language would be very beneficial for deaf children starting at birth for full access to language until they receive a CI and catch up in spoken language. They could either continue signing or stop, depending on their progress of spoken language. That is just my personal opinion and I do respect all the parents’ decisions if they have researched the options for their deaf children.

I met with one of the CI Circle parents who happened to live near me, and she shared her experiences with her implanted child. I also asked the audiologist more about cochlear implants and she said mostly positive things about the implant - that in general, CI benefits outweighed risks. I inquired at another deaf school nearby, but in contrast, they emphasized more heavily the CI risks rather than benefits. That made me more nervous, so once again I expressed my concerns to the CICircle about these risks. I also went to a hospital and asked an audiologist there about CI benefits vs. risks. She warned us that my child may need additional support in spoken language development because my husband and I are both deaf. She said it could mean a lot more intensive therapy outside our home than other children with CIs who have hearing parents require. That concerned us a little, but we wanted to give our child an opportunity to hear at an early age and if it didn't work out, he could always remove the external device (processor) and use ASL.

My husband and I decided to give our son a CI, and scheduled the surgery in 2007. But I admit, we still had mixed feelings and were so nervous because he was a very happy and healthy child. The surgery was the hardest part for us: it was hard to let him go under the knife. When we heard the news about a deaf girl's death because of meningitis due to her CI right at the time for our child’s surgery, that made us much more nervous. The girl who died didn’t receive the appropriate vaccinations and her CI was older technology that was even recalled. I asked our surgeon to postpone the surgery for a while until he was at least 2 yrs old or older with a stronger immune system, but the surgeon encouraged us to give him a CI as early as possible for more positive outcomes. I researched on all the medical risks of cochlear implants, discussed them with the surgeon in depth, and he responded with all the answers and that helped us feel better, though we were still nervous.

We took our son in for the surgery, but he had bad chest congestion that day and the surgery had to be postponed to the next month. I was kind of relieved, as I needed more time to think about the CI with many questions such as "Are we doing the right thing for him? Is it safe enough for him?", etc. I felt a little more relaxed when I put my child in the surgeon's hands about a month later and was so glad when the 2 hours surgery was behind us and he was back to his old self quickly on the same day.

I was also anxious for our son's first activation a month later when he was nearly 2 years old. I was very happy that his CI worked fine. The hearing sensation was new for him, but he quickly accepted it and left the sound processor on his head all day, everyday. That showed us that he benefited from it, but he didn't really understand everything for the next couple months as he began learning how to hear. His regular child care teachers thought that his CI didn't work and even suggested that he attend a deaf school! I was upset and confronted center’s director and we had a meeting with them. The director reprimanded the teachers for making assumptions without asking us about his CI. Soon our son began to hear and understand more and more. The teachers noticed this and realized he was doing well with the CI.

Our son made huge progress in spoken language in the past 1 ½ years after his first activation, though is still about a year delayed at age 3. His therapists were surprised at how fast he has progressed in spoken language, saying that he progressed even more quickly than most other children who received CI at about the same age but didn't use sign language. Our son had been using ASL since birth and uses appropriate age level ASL. I am not terribly worried about his delay in spoken language and given his progress so far, feel confident that he will catch up at some point since he already is fluent in ASL and is advanced in all the developmental areas. My husband and I are relieved that he has been progressing well in spoken language despite the fact that we, his parents, are deaf. My son has been very motivated in learning both spoken language and ASL. He enjoys receiving weekly therapy from an auditory verbal therapist (AVT) and gets thrilled to see ASL teachers every week. I think it is wonderful for him to take advantage of both visual and auditory languages as long as he uses them separately. He uses ASL at home and spoken language at school and it seems to work out well. Also, he refuses to take his CI off at bedtime every night and will cry hard if I remove it. So I have to let him fall asleep before taking off his CI. He often asks for his CI back first thing in the morning. We are so happy that we made the right decision for him because he really likes using the CI.

Our son is now attending an oral/auditory preschool program part time and regular preschool with typical hearing children for the remainder of the day. As for his future, I am expecting he will be able to mainstream in Kindergarten at a regular public school with the FM system in his classrooms. It would be nice for him to attend the same school as his hearing sibling. It will all depend on his progress in spoken language and on how well he socializes with typical hearing children. I am pretty sure that he would do well in education at a regular school without any problem but I worry about his emotional and social well being. I have heard a lot of deaf and hard of hearing (HOH) students were very lonely when they were mainstreamed as the only deaf/HOH student at regular schools even though they did very well in education and even spoke well (especially those who used oral method), yet they have always felt different from typical hearing peers. I feel it is very important for my son to have high self-esteem, the ability to socialize well with typical hearing children and have a good number of friends at a regular school. I would also like him to have some deaf friends who are also bilingual in ASL and spoken English in addition to those who use ASL or spoken English only, as part of a good support system. Maybe I will send him to a deaf school that provides both spoken language and ASL when the time comes. Who knows -- by then he may even have some opinion of which school he would rather go to and will tell us!

Written by Anonymous Mom to a deaf child with a cochlear implant

Edited by the Cicircle News Staff