My Two Cents: Cochlear Implants

I used to feel sorry for children who had cochlear implants. I did.

When I saw them it broke my heart because I really believed that their parents just didn’t understand deafness. I judged those parents. I assumed that the parents were looking for a quick fix to something that in my opinion didn’t require fixing. I said things like, “I would never do THAT to my child.” Aaron and I talked about giving Leah choices and we decided that she could choose to have an implant when she was age 18.

We think that Leah was born profoundly deaf. We didn’t discover her deafness until she was 14 months old. When her deafness was diagnosed we immediately started signing with her. It seemed the obvious choice, I mean, she was deaf. We never bought into the old wive’s tale that signing would delay our child’s speech. Many people warned us that Leah might never learn talk if we signed with her. I always laughed and said, “She’s deaf, she might never learn to talk anyway!” My concern wasn’t for my child’s ability to say words. I wanted much more than that! I wanted full connection and communication with my daughter. I wanted her to be a critical thinker.

When Leah was seven she was no longer using hearing aids, because, as she put it, “They don’t work! They don’t help me, they just make my ears itch.” She had gone without amplification for a few years and then, at age seven, my daughter asked for a cochlear implant.

Let’s just say there were a few things I had to get over… oh, like realizing that some people out there might judge me, just as I had been so judgmental of others. (Ouch! Ouch! Ouch! Don’t you hate that one?)

Leah has now been implanted for seven years, the same amount of time she had gone without hearing a thing.

I have found that one of the BIGGEST misconceptions still floating around when it comes to choices in deafness is in thinking that sign language and cochlear implants are mutually exclusive. They are not. Actually it is our family’s experience that Leah’s success with her cochlear implant was because she was already fluent in American Sign Language* when she got her implant AND because we have continued to sign with her. We never stopped signing. (*She was also already fluent in written English by that time)

When someone receives a cochlear implant there is a period of adjustment as the recipient begins to understand the sounds of the world around them. It was invaluable to us to have a full language (American Sign Language) to communicate with Leah during this new learning period. We had full and complete communication as our child experienced the sometimes scary world of sound. Yes, our ENT told us to stop signing immediately after Leah’s implant surgery, which was baffling to me. “She just had major surgery and you want us to refuse to communicate with her through recovery? Her implant won’t be turned on for weeks and you want us to stop communicating with her?” To me that sounded like a form of child abuse. We never stopped signing with Leah and we never will stop.

Leah is a very successful implant recipient, we feel that these are a few of the factors that helped her to use it so successfully.
1. Leah chose to have an implant, it wasn’t something that was done to her. She was old enough to control the settings and she was old enough to ask to be “re-mapped” when she was ready for more sound. We viewed the implant as another tool to help Leah communicate, not the only tool.

2. Leah was already bilingual when she was implanted. She understood ASL and her written English was exceptional. She was reading beyond her grade level. With the addition of her cochlear implant she could simply focus on acquiring and improving her listening skills and pronunciation, because now she could actually hear some things. She wasn’t trying to learn English with her cochlear implant, thankfully she was already fluent in it and her focus was entirely on learning what English sounded like and how to make those sounds herself.

3. We always focused on our child’s strengths. Prior to her implant, we did not do private Speech Therapy. Why? Simple. Because Leah couldn’t hear:) We didn’t need her to learn how to say words in order to connect and communicate because we all learned to sign. Speech is a skill that your child has a lifetime to acquire.
Speech is not a language. Speech is one way to deliver a language.
English is a language, American Sign Language is a language, but speech… speech is a skill.

You want your deaf child to learn their first language before the age of 3 if possible. If they can’t hear, don’t waste your time and theirs trying to get them to learn a listened to, spoken language. Since Leah couldn’t hear English we didn’t try to get her to learn it through speaking. She learned it through reading and writing.
(If your child is deaf please read #3 until it makes sense. Do not get stuck with the thought that you “just want your child to talk.” Trust me, you don’t just want that. You want so much more for them!)

4. Language doesn’t delay language. The fear of signing is ridiculous and thinking that a child will not talk because they first signed is as preposterous as saying, “don’t let your child crawl or they will never learn to walk.” Babies crawl before they walk and they sign before they talk. If your child has the ability to deliver a spoken language, they will acquire that skill whether or not you sign with them. If they happen to have a speech delay or a disability that gets in the way of speaking, then thank heavens you are signing with them and giving them a way to be understood. If your child’s speech is delayed, it is not the signing that delays speech… it is something else entirely, because communication doesn’t delay communication.

Technology frequently changes and even fails. Cochlear implants can be rejected by the recipient. The implant may fail or simply never work at all. Batteries die and parts break. Programming can accidentally get erased. Sign language will never fail, the batteries will not die, you can use it while swimming, you never have to “turn it on” or struggle to locate it in the middle of the night. Sign language can get soaking wet and it’s always at your fingertips.

Leah will always be deaf. Her first language is American Sign Language. She has learned English as a second language through reading and writing. With her cochlear implant, Leah has learned how to pronounce words and to understand English when it is spoken to her. She is a child who has it all.

If you are considering implanting your deaf child, my recommendation is this – do not put all of your eggs in one basket. Give your child EVERY opportunity to communicate. Give them many tools! Cochlear implants do not work for all children, implants are not always successful and should not be portrayed as a “cure” for deafness. Similarly, hearing aids do not work for all children, they are not always successful and should not be portrayed as a “cure” for deafness. You might want to consider that deafness doesn’t need a cure.

Leah recently saw her ENT, the same one who had asked us to stop signing with her seven years ago. He asked her this time if she would like to implant her other ear, since she only has one ear implanted. She looked at him and said, “Tell me what you think that would really do for me?” He smiled and said, “actually not much, you do so well. Leah, I think you should save your other ear for the future. There are some exciting medical advancements that you will see in your lifetime.”

My two cents: Sign language should be the first choice for a deaf child, no matter what additional options you pursue.

I’m Sorry, Your Child Is Stupid

I asked myself, Rachel, if you only had 1 year left to blog. What would you write?

I would write this…

Our experience raising Leah is not typical, not typical at all. I dare say, we have successfully raised a deaf, bilingual child.

We did it in a school environment that called us “crazy.” In Leah’s Individual Education Program (IEP), where she transitioned from Early Intervention to preschool, we were asked,

“Why do you want ASL? No one else wants ASL.”

I didn’t care what the district said, because really, we had nothing… or was it everything, to lose.

The Parent Infant Program representatives from the state agencies told us that our child would graduate from high school with a third grade reading level. Then we asked them,

“Why do you believe that a child who cannot hear does not have the ability to learn?”

We asked them,

“What are you doing wrong? What is wrong with the education of deaf children in America?

These questions kept us awake at night. Why on earth was it acceptable that generations of deaf children were being failed by the only school systems available for them to attend? It became VERY, VERY clear that we could not and would not entrust our toddler’s education to such an admittedly broken system. They could guarantee that after TWELVE years of schooling Leah would have broken English and at age 18 she would be able to read like an 8 year old. They would not prepare her to compete with her hearing peers heading to college and into the work force.

The solution offered was an embarrassment and I imagined what the reaction to that statement would be if it was said about any other group of individuals… Take a deep breath and try out the following~

“I’m sorry, your child is black. They will graduate from high school with a third grade reading level.”

“I’m sorry to tell you that you can expect your child to graduate from high school with a third grade reading level because she’s a girl.”

Go ahead and fill in the blank- “Hispanic” “gay” “has blue eyes” “short”… fill in the blank!
ANY of those statements would be met with riots! No one would swallow it as truth! No one would stand for it! It wouldn’t just be the parents up in arms, the entire community would fight for those children!

Imagine that your state-funded school had the balls to say that about ANY child!! These are your tax dollars at work.

Now, my friends, let it sink in that this is the reality for parents just like me. The Utah School for the Deaf and Blind said, “statistically you can expect Leah to graduate from high school with a third grade reading level.” Parents of deaf children have been hearing that sickening statistic for years and not just in Utah- this is a nationwide epidemic. The worst part is… parents believe it! They look at their little deaf child and believe that their potential is limited because some stranger from a state organization says so.

Where is the class action lawsuit?

Every child with a disability is guaranteed a “free and appropriate education”.

This conversation should make you feel sick.
It should make you angry.
It should be on the local and national news repeatedly until it is resolved!

For some reason, Aaron and I didn’t believe them. Instead we believed that we could offer Leah something much better than that. We would do it. We didn’t know how, but we knew that she was deaf, not stupid.

We sought out deaf adults and found many who had college degrees and PhDs!! Proof that a deaf person could succeed academically! Most of these deaf adults had deaf parents. Their parents had never struggled to accept that their child was deaf. These deaf children were in a signing environment from day one. We asked deaf adults for their advice on raising our deaf child. We asked them because they had lived the life that we wanted Leah to live… a life without limits. We followed their advice. We looked to the Deaf Community as our compass. They told us that Leah’s first language should be American Sign Language. They said that once Leah had a solid first language (ASL), we could then teach her English through reading and writing.
Finally something that made sense!

We were excited to share this breakthrough with the Early Intervention team, with the School District, with all of those people who could make a difference for every deaf child. We told them what we had learned and what we wanted for our child and why we believed it would work. They looked at us like we were crazy. They told us we needed to pick a program that they offered, they weren’t going to make up a new program just for Leah Coleman. It was such a slap in the face to have them simply re-offer their broken system, since that was all they had.

We visited every preschool in their system. We drove hundreds of miles to do so. We were looking for a teacher, the right teacher. At each school we saw the same sad scenario, the deaf children did not have free, expressive conversations, they were signing by rote.

Each time we met the teacher they would ask, “What’s her name?”
I responded, “Ask her.”
“NO! Don’t tell me she can…” and they would turn to Leah, asking her in sign, “What’s your name?”
Leah responded by fingerspelling her name “L-E-A-H” and then showed them her Name Sign.
The teachers, one after another were stunned.
“How old is she?” They asked me.
I rolled my eyes. “Ask her.”
“NO!!!” They turned excitedly and asked Leah, “How old are you?”
Leah smiled “I’m two-years-old almost 3. I’ll be 3 in December.”

It was as if they had just discovered a new species. They were fascinated by her. Then they would then sit down with Leah and ask her everything they could think of. Leah chatted on and on about this and that, her favorite colors, foods and the people in her life. The teachers were completely engaged.

And every visit ended with them saying, “We really would love to have her in our class. She would be such a great language role model for the other children!”

It was nice that everyone wanted Leah, but I had a sick feeling in my stomach.
A nagging question.

Who would be Leah’s role model?”

There was no ASL classroom and so we created one. We chose a deaf teacher and then we wrote into Leah’s Individualized Education Plan (IEP) that she needed to be in a language rich environment, one where she had access to acquire her natural language, ASL. It sounds simple, really and no one was opposed to writing that in to her IEP… BUT… when we explained that ASL is a visual language and it requires two fluent signers in a room for a child to have natural language acquisition, the team was a little perplexed. See, that is how we were able to get Leah a one-on-one aide. Her aide was fluent in ASL and the teacher that we chose was deaf. Now there were two signers in the class and our child actually had an appropriate and effective language model.

In school Leah could not communicate with her peers. They stared at her blankly as she signed on and on about this and that. Then she started coming home signing like them. I was horrified! All of our hard work seemed to be dissolving right before my eyes! I asked, “What did you do today at school?” Leah would respond in a repetitive, almost robotic way, “BIKE-BIKE-BIKE” she signed, not making eye contact with me. Then “EAT-EAT-EAT” “PLAY-PLAY.”
“Leah. Leah. Look at me. What did you do at school today? I’m asking a real question.” Every day the same answers by rote. She would sign like that for about an hour and then finally ease back into being the expressive, happy kid we knew and loved.

We went to the school and visited the older grades. K-4 we saw the same thing. As I looked at the projects and work displayed on the walls in each classroom, it was obvious to me that these children were not doing grade appropriate work. As far as language level, Leah was testing at the level of the deaf 4th graders, but she was only three-years-old. We couldn’t put her in with nine-year-old.

We also created a Deaf Mentor program for Leah. Leah had a Deaf Mentor when we lived in Utah, a wonderful woman named Diane would come to our home each week and teach us ASL. There was no such program when we moved to Los Angeles. Luckily it was in her Individualized Family Service Plan(IFSP) and so we continued it. We were told that it would be up to us to find the deaf adult. We agreed. We found a deaf man who was a teacher working for our school system. That made it easy for them to pay him. John came to our home once a week for an hour and we turned our voices off and just signed.

People always ask us how we did it. How we were able to smash the statistics. How Leah can comfortably identify herself as hearing and as deaf. The above is just one piece of that puzzle. We knew that Leah’s success was ultimately up to us. We couldn’t even pretend that the current school system would carry her. We took on her education and success as our own responsibility.

Most importantly Aaron and I saw Leah as a wonderful little girl with a bright and limitless future. We saw her as all of that even when so many others… so many “professionals” only saw her as a deaf kid.