Dec 23, 2008

Happy Holidays From the Pediatric Cochlear Implant Circle!

The members of the Pediatric Cochlear Implant Circle would like to wish everyone a happy, healthy and safe holiday season!

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

Nov 19, 2008

Determination and Perseverance =Full Scholarship


I am an active member of the Pediatric Cochlear Implant Circle, however for those reading who are unfamiliar with our story, here is a brief background explanation: John was late diagnosed (no newborn screening then) and didn't receive his hearing aids until almost 3.5 years. He had the receptive and expressive language of a 12 month old at his 4th birthday. John received his first Cochlear Implant in 2000 at the age of 8 yrs, 8 months. That one failed and he received another one in 2004. That one also failed. We decided to switch manufacturers and he received his third one in 2007. So far, so good (fingers crossed).

John is now a senior in high school. I've been able to share a lot of his success with the CI Circle discussion group. This year's excitement was originally generated when we were informed that he was ranked 1st in his class, and that he had been selected as a National Merit Semifinalist. He began the college application process this fall. The most recent news is that he has been informed that he
a) Has been accepted to the University of Pittsburgh;
b) Has been accepted into Pitt's School of Engineering;
c) Is eligible to participate in Pitt's University Honors College should he desire to;
d) Received a letter from the School of Engineering awarding him a $4,000 per year scholarship in addition to other funds awarded from the university itself (You can imagine how that got our mind racing since we received that letter ahead of any other award letter!);
e) Received a FULL OUT OF STATE TUITION SCHOLARSHIP worth over $100,000; finally,
f) Has been invited to apply to become a Chancellor's Scholar, which offers the abovementioned full tuition AND room and board. John wants to study biomedical engineering so that he might have the opportunity to make a difference in people's lives in the way that the CI has made a difference in his. We have 4 other schools to hear from, and we are hoping that this is a sign of more good things to come.

This is all very exciting for John and our family. He has worked really, really hard over the years, and I'm so happy to see him receive recognition for that.

*But that's not why I'm sharing this news with all of you*

I want you all to know that John could NOT communicate at the age of 4 years. He didn't receive the CI and hear all sounds across all frequencies until almost the age of 9 years. He suffered two CI failures, and lost the time it took to determine that he needed to be explanted and reimplanted. At times I despaired that we had made the right choice when we decided not to use ASL. When he was between the ages of 3 and 4, the employees of the first school district we lived in told me that "He was mildly, mentally retarded", that "He will never learn to speak", that "He might even be autistic", and that "In my professional opinion, I have to tell you that I think you are committing child abuse for insisting that he become oral."

We refused to listen to them, we moved him to a school district that had a lot less money but a much better attitude, and we supplemented with all the private SLP and AVT that we could. My husband worked two jobs for several years to make it all possible, but it was worth everything when we see that John was allowed to reach his full potential. Which was all we wanted to begin with.

I hope that John's success inspires some of you who might be surrounded by naysayers. I hope that his story encourages those of you who are feeling doubtful because of setbacks. We have so been there, done that. We feel very blessed and grateful to have received the necessary support as we suffered our naysayers and setbacks. The CI Circle helped us to take a deep breath and move forward again.

Written by Diane

Nov 14, 2008

Is Bilateral Really Better?

One of the most common questions people ask me is "So what's the difference between having a child with unilateral and bilateral hearing?"

Having a child who wears only one cochlear implant (CI), but also a child who wears two, lets me see on a daily basis how different my children are in that respect. Before I begin telling you about my kids, I wanted to mention that not everyone is a candidate for bilateral CIs. It may surprise you to hear that just because your child received a cochlear implant in one ear, doesn't necessarily mean that they would be a good candidate for bilateral CIs. Maybe they have good access to sound with amplification or a hearing aid or maybe medically they don't qualify for the surgery itself, but you should always consult your surgeon and audiologist to help determine whether your child would be a good candidate. In my son's case, his anatomy prevents him from receiving a second cochlear implant. He has severe inner ear malformations and his facial nerve is also higher than that which is found in a typical patient. In fact it took two attempts for him to receive his one CI.

When each of my children received their cochlear implant (Gage at age 3 1/2, Brook at age 2 1/2), we knew we had done the right thing. We couldn't have been more pleased with the results, they were actually hearing. It was amazing to watch them listen to new things, hearing soft sounds they never knew existed. While at the audiologist's office for a routine visit, we were told that my daughter would be a great candidate to receive a second CI. I told her we would think about it, but I seriously doubted that we would be interested. I had already read about the benefits of bilateral hearing: I knew that it would help with localization (figuring out the direction where sounds are coming from), I knew that she would have an easier time hearing, I knew she would be less tired at the end of the day. My concern was that I had a five year old boy, who I could not offer these things to. How could parents offer all these great and wonderful things to one child, and not the other? After many sleepless nights, I realized that we as parents shouldn't deny my daughter these things either, just because her brother was not a bilateral candidate. I called the audiologist's office, and we began the pre-implant process once again.

Like before, we didn't really know what they were missing until she received this second cochlear implant. She wore both processors from the beginning, removing her first one during therapy visits, so that we could try to teach her to hear with the newly implanted ear, just as we did after the first surgery. Within weeks, my now bilateral child, could actually hold a conversation in the car without me having to turn around to face her, something I still need to do with my son. Even today, over a year later, she cannot only hold a conversation in the car, but she can do it with the radio on. I also discovered that she was no longer searching for sounds, they simply found her. If they are both playing on the floor and the telephone rings, my son's head pops up, he looks from side to side, and resumes play, realizing it was the telephone. My daughter never even looks up, but might say "Is that my Nanny calling?" She automatically processes the information since she can determine direction from where sound is coming.

While outside playing, my son can hear cars pass by and for safety reasons alone, we are so thankful he can. My daughter however, can hear the cars approaching, before they pass by, truly amazing. When using the phone, my son needs to use the telecoil option on his processor. My daughter can use the speaker phone and not only hear the person on the other end of the line, but she can hear background information from that party and detect what is going on at that house. She heard her grandmother cooking as she spoke to her on the phone one day, and that was incidental information. We naturally say my son's name before we speak to him, to let him know that he needs to listen to us, but with my bilateral daughter, we can skip this and jump straight into conversation and she can follow along with greater ease. If someone approaches my son unexpectedly or doesn't announce that they are speaking to him, he always follows with "what?" needing a repeat.

Those considering bilateral cochlear implants for their child need to also consider the added expenses. The child will need to have both processors mapped as opposed to just one device, and there will be other added expenses such as batteries, copays, etc. For us, we decided the benefits outweighed these expenses and we chose to proceed with our daughter's second device. We felt that having a back up way to hear, should one CI lose sound temporarily, would be to her advantage. I can certainly tell when my daughter only has one device on, because she needs frequent repeats just like her brother. We feel good that she now benefits from the bilateral hearing, and we know that her brother has learned to adapt well with his unilateral hearing. He automatically positions himself close to the speaker, he uses closed captioning when available, and he has little sister to look to for help when he needs it.

Written by Val B.

Nov 6, 2008

What Are My Options For Communicating With My Deaf Child?

The choice of communication and educational methodology for children who are deaf can be a very heated and emotional issue. The debate about “oral” vs. “manual” methods goes back over 150 years to the days of Thomas Hopkins Gallaudet and Alexander Graham Bell. Each method has many parents, educators, advocates, and others promoting it.

Ultimately, the choice of communication methodology is an intensely personal one that each family makes for itself. There is no one approach to language and educational development that is best for all children or families. Each family’s decision is based on preferences, priorities, and beliefs that are unique to them, as well as the resources and support available in their area and other factors.

The choices can feel daunting, but there is every reason to be hopeful! It is important to remember that there are many children (including children whose parents are part of the CI Circle Community) who are THRIVING using all of the different communication options. There are many paths to a full, happy, independent, wonderful life for your child! Also bear in mind that no choice is forever and that you can always adjust your approach if your child’s and family’s needs change.

Here is a brief overview of some of the most prevalent approaches to communication and education for children with severe-profound hearing loss.

AUDITORY-VERBAL: The Auditory-Verbal approach stresses the use of listening alone (with appropriate amplification, usually cochlear implant(s)) for the development of language. Visual supports (such as gestures, signs, and speech-reading) are not usually used and speech-reading may be actively discouraged/prevented during therapeutic activities by the adult covering their mouth, positioning themselves behind or beside the child, or by using distractions such as games and toys. Structured therapy activities stress the development of auditory discrimination and other listening skills, as well as receptive and expressive language development. The Auditory-Verbal method, which practitioners often refer to as the “A-V lifestyle” also emphasizes parental involvement in the therapy process, carryover of therapy targets into everyday activities, and education with typical, hearing peers. Some families choose to work with an AV therapist and apply many of the AV principles while also using a visual communication method at home and/or school.

AUDITORY-ORAL: The Auditory-Oral approach also emphasizes listening (with amplification) and spoken language, without the use of sign language or other systematic visual supports. Unlike in the A-V approach, speech reading is not discouraged and may be actively taught, based on the child’s need. Most families and therapists report that children with cochlear implants, especially those implanted in infancy/early childhood, do not rely on speech-reading to understand speech, although they may use it in noisy situations or when their equipment is off. Most “oral deaf education” programs, both private schools and public-school based programs, use the auditory-oral approach.

CUED SPEECH: Cued Speech is a system of hand-shapes and positions designed to facilitate speech reading by representing sounds. The use of the hand signals helps the listener distinguish between sounds (like /b/ and /p/) that look identical on the lips. Cued Speech is NOT a language; it is a method of representing spoken English (or any spoken language). The advantage of Cued Speech is that it gives the “listener” access to all the phonological information of spoken English whether or not she can hear them, which may help with both language and literacy development. Compared to sign language, Cueing can be learned very quickly, and any word (including proper names, words in other languages, etc) that can be spoken can be cued. Cued Speech never entered into wide-spread usage, although some individuals and their families achieved a great deal of success with the method and advocate it enthusiastically. Most cochlear implant users are able to access the phonological information of spoken language without the visual support of cueing, but it remains an option that families may want to explore.

American Sign Language: ASL is a distinct and complete language, with its own vocabulary and syntax not closely related to that of spoken English. It is the first and primary language of many Deaf adults and children (as well as the first language of some hearing children who have Deaf parents) and has a rich history and culture (with poetry, storytelling, etc). For most hearing parents of deaf children, of course, it is an unfamiliar foreign language that they will need to learn from scratch if they want to teach it to their child. Having evolved for communication among Deaf people, ASL (and other sign languages – there are many) is a visual-spatial language that uses movement, location, facial expression, and many other features to carry meaning.

It is very difficult to speak grammatical English and sign grammatical ASL at the same time (the neurologist Oliver Sachs, in his interesting if now somewhat dated book on Deafness, described it as “like trying to speak English and write Chinese at the same time.”) There are also systems that use manual signs (many of them borrowed or adapted from ASL) as well as invented signs and markers to depict spoken English manually – the most widely used of these is called Signing Exact English 2. These convey the grammatical information of English but can be challenging to learn and use. Most people (hearing and Deaf) sign somewhere along the continuum, using whatever combination of ASL and SEE signs and grammatical features they feel comfortable with (this is sometimes referred to as Pidgin Sign English, PSE).

There are many different ways that families can use sign in communicating with their deaf children. A few are described below. The label “total communication” (TC) is used to describe any approach that combines spoken language and signs. When considering a school program described as “TC,” parents should observe it carefully to determine what approach is used.

(Note: We have included this video to provide a visual representation of total communication in a school, we are not advertising in any way the school represented in this video)
KEYWORD SIGNING/SIGN SUPPORTED SPEECH – When they learn their child is deaf, many parents explore signing as a communication option. Those who opt to make signing, as well as cochlear implants and spoken language, part of their child’s communication experience have several options. One approach is referred to as “keyword signing” or “sign-supported speech,” among other labels. Families using this strategy use spoken English (or another spoken language) as their primary method of communication, but add some signs to support their child’s emerging language use and provide a “bridge” to spoken language. The number of signs learned and used is usually fairly limited (from a handful to a few hundred), representing some of the most important concepts and objects in a young child’s life.

Signs are always combined with speech, and usually only the most important words in the sentence are signed (e.g., a parent might say “Get your shoes” while signing SHOES or “I want another cookie please” while signing “WANT COOKIE PLEASE.”) Most families using this approach gradually fade the signs over time as the child’s spoken language develops, although some continue to use signs when the child’s implant is off (e.g., in the bathtub or at bedtime). This approach is very similar to the “Baby Signs” strategy popular with some families who use signs to “jumpstart” communication with their hearing babies and ward off frustration while speech is developing, although families with deaf children often learn more signs and use them more systematically.

SIMULTANEOUS COMMUNICATION – In the simultaneous communication (sim-com) approach, spoken and signed language (usually a manual English system like SEE2) are used at the same time. All messages are spoken and signed in order to convey the information both auditorally and visually. While some people are able to become very proficient in signing and speaking at the same time, others find it difficult and may simplify their sign, their speech, or both.

BI-LINGUAL/BICULTURAL -- The Bilingual-Bicultural (or Bi-Bi) approach aims to develop fluency in both ASL and English and allows children to function as members of both the hearing and Deaf communities. The philosophy of Deaf education developed a number of years ago and initially focused on fluency in ASL and written English, but the advent of cochlear implants makes bilingual fluency in spoken English an achievable goal as well. The Bi-Bi method stresses the integrity and separation of the two languages, so sim-com is rarely used, although one language may be used to explain vocabulary, structure, and concepts of the other. Many, but certainly not all, parents who choose this approach are Deaf themselves or have previous experience with Deafness. Learning ASL from “scratch” and teaching it to your child is a challenge, but one that some parents, drawing on support from schools for the Deaf and Deaf adults in their communities, have embraced.

By Marny Helfrich, M. Ed. As an early childhood special educator by training, I had the privilege of working with young children with hearing loss and their families for five years in an inclusive, open-minded, spoken-language focused program. In that time, I was lucky enough to get to know families using a wide range of communication strategies, from strictly AV to Bi-Bi, and to see their children growing and thriving!

Nov 5, 2008

The Unexpected - An Adoption Tale

Like most first time parents, we had hopes of receiving "that perfect child". Our "perfect child" had been born at twenty-nine weeks and was left alone in a Russian orphanage. We met him first at ten months of age. They gave us a medical history on the little fellow, that consisted of a brain bleed, numerous infections and viruses, and he was again fighting pneumonia as we peered into his little eyes. I saw a "light" in this little boy that was reassuring, I knew he was meant to be ours. He had so much love and life to share. He was the perfect child for us.

At fourteen months of age, he was given a clean bill of health and we brought him home. He was so tiny. We had no reason to believe that his speech and language delay was anything other than adapting to new people, a new environment, and a new language. This was exactly what we were told to expect in our adoption classes. Fortunately, our pediatrician had his check-list that he required to be completed for all internationally adopted children. On that list was the Hearing Test. Our son was “uncooperative” for the first hearing test, said the audiologist. Then a month later "he didn’t understand the tasks” for the second hearing test, said a different audiologist. That was when we were referred for an ABR (Auditory Brain Response, measures electrical activity of the brain from the hearing nerve by attaching small electrodes to the head). Just as we were all waiting for him to fall asleep, a bell sounded and our son turned toward the bell. Ahhh. He heard it and everyone saw him hear it. This test was now just a technicality. It was just something for the file, right? When the testing was complete, we received the unexpected... “It appears he has a profound hearing loss,” they told me when the test was complete. But, he could hear – we saw him respond to the sound of the bell! The audiologist began speaking a foreign language of alphabet soup, talking about AN/AD, OAEs, ABRs, cochlear microphonics, audiograms, speech discrimination. It was a whirlwind. I didn't understand what all that meant. Our precious baby might have Auditory Neuropathy they said, but we wouldn’t know for sure until we got another opinion at a center more familiar with Auditory Neuropathy/Auditory Dyssynchrony (AN/AD).

The time between appointments seemed like an eternity, but was only two months. One day we were convinced he could hear, the next day we were sure he couldn’t. How in the world would we figure this out when we were still getting accustomed to just being parents. Finally, the time came for the appointment at the center that was more experienced with this particular disorder. The tests were conclusive; he had AN/AD. We were right and wrong, he could hear – but he couldn’t understand what he was hearing -- it wasn't coming in as clear information or sounds...just noise. They fitted him with his hearing aids at 19 months old, but we knew that some AN/AD kids can successfully use hearing aids and some get no benefit from them at all. There was no way to know how well he could hear. Even with all the high tech testing, nobody could tell me what to expect.

After six months, there was no marked improvement in our son’s language development. Even though he was detecting sound at levels that should allow for speech development, he wasn’t even babbling. So, we began using Cued Speech and started down the path to learning more about cochlear implants and considering that as the best option for him. After thirteen months of strict hearing aid use and intense therapy, he only showed minimal progress in understanding language through audition alone. Our son was approved to get the first of his two cochlear implants. We immediately stopped using Cued Speech when his processor was activated, as we were advised to do.

The progress he made with his first cochlear implant was amazing. He worked very hard and went from having expressive language that was “unable to test” to having over eighty words in less than a year of implant use! He continued to make progress, but it was evident to everyone around him that there were times that he still had trouble hearing and listening. Though his progress was good, we all felt that he could be doing even better. After watching and documenting his behavior on the “good” and “bad” hearing days of his unimplanted ear, we determined that the AN/AD in the unimplanted ear must have been interfering. We went forward with the plan to get the other ear implanted.

We had moved to a new city and found a wonderful and highly respected surgeon. We began the process of attaining funding for the second implant. After months of work, the funding came through. Two and a half years after his first implant, we went into surgery to get his second implant. We were so impressed with how well he did with his first cochlear implant we chose the same product with this second surgery. When the operation was complete however, we received, yet again, the unexpected. Instead of receiving the device chosen by us, he had mistakenly been implanted with a different device. Again we worried. Will the two devices work in sync? Would they interfere with one another? How would that sound to him? Not only do the devices have different processing speeds and completely different technology, but think of all the equipment to lug around on vacations. We were assured that having two different brands would not be an issue. “Some people actually choose to have two different brands,” we were told.

We have been amazed. His progress with both of his cochlear implants has been tremendous. He loves both of them. He doesn’t have a preference, except that he wants to wear both. He hears equally well from each, and he is just over six months post-op since becoming bilateral. We were advised by our audiologist to go “cold-turkey” the second time around and he quickly adapted to the new input. His progress was so good that he was able to begin using both processors together after only one month of being activated. There are definitely perks about each brand, but as everyone had told us, both brands are great. His implants allow him to hear, to speak, and to be understood. I can only imagine how much easier it would have been for him to reach this point if he had been implanted years earlier. His hearing was never noted as an issue when we adopted him, but when the judge asked us if we were prepared to handle issues that arise from children being so premature, we said "Yes", fully confident we could handle the unexpected. We didn't have a clue - but we are so thankful that we didn't.

Written by a mom to an internationally adopted child
Edited by the CI Circle News Staff

Related posts of interest: Which Cochlear Implant Brand Should I Choose For My Child?

It's Not a Sprint, It's a Marathon

Nov 3, 2008

What is a "TOD"?

When your child is first diagnosed with hearing loss, you are required to learn not only new vocabulary related to the subject of hearing loss, but you also soon discover that the list of acronyms is just as long. So, here, we are taking one such acronym and defining just what it is, and why it’s so important in your hearing impaired child’s life.

A TOD is a Teacher of the Deaf. He or she is a teacher and has either a Bachelor of Science or a Master's degree in Education of the Hearing Impaired. Audiology classes, language development classes and also classes on speech development are among the required curriculum of a Teacher of the Deaf. A Teacher of the Deaf, therefore, understands the unique needs involved in educating a hearing impaired child. Some TOD training programs emphasize sign language, while others emphasize spoken language. (For more information about training for this rewarding career, visit )

A TOD can play many different roles in the education of a child with a hearing loss. In the United States, as soon as an infant is identified with hearing loss, the state education agency is notified, who then notifies the local early childhood intervention agency. In many towns or counties, the local deaf education program is then contacted so that services or visits to the family from a deaf educator can be implemented as soon as possible. In the very beginning, Teachers of the Deaf typically concentrate on educating parents in the choices available and also help parents by answering the many questions they have. The educational approach to be used (for example, an oral approach, total communication with speech and sign simultaneously, etc.) should be decided based on parental choice.

Many hearing impaired children do not learn language like a typical hearing child. They almost always need to be consciously taught vocabulary and the rules of grammar. At some point, children may begin to pick up language more naturally. In the case of a signing child, the family needs to be very involved and also sign everything they say. In the case of an oral child, the family should be talking all the time to foster spoken language development. In both cases, parents need to be narrating their children's lives! The TOD helps to train parents as to how they can best communicate with their child and also how to help their child to learn language.

Once a child reaches preschool age, depending on his or her needs and language level, the child may enter a special program for deaf children. That child's teacher will probably be a Teacher of the Deaf. This is referred to as a "self-contained" setting because the class contains only (or mostly) hearing impaired students. The TOD's job is to build language (and sometimes to support the student in mainstream classes, if the child spends part of the day in a regular classroom.) Typically, children who need more support and more intense help with language development are placed in a self-contained deaf education classroom for at least part of the day. If the child uses sign language as their primary mode of communication, the Teacher of the Deaf signs as she teaches and there is an interpreter to translate and sign during the mainstream classes. Parents who chose the oral route for their child may still send their children into a self-contained placement, such as an auditory-oral program or school. Again, intense language development would be the reason for children to go to a special program, and the teacher would focus on fostering spoken language development.

Once a child enters a mainstream setting, there are many roles a deaf educator can play. Many times the Teacher of the Deaf is there to make sure a fully-mainstreamed child is receiving the services they need to progress adequately in that mainstream setting and to be sure the classroom teacher fully understands the student's unique needs. The Teacher of the Deaf may be in charge of making sure additional equipment, such as an FM system, is available and working properly, and may be the "go-to" person if there is a problem with such equipment, if there is no educational audiologist available.

The TOD may consult with the teacher and school to make sure the acoustics of the room are appropriate. (Acoustics are how sound behaves in an enclosed space.) The TOD may notice if there are echoes or environmental noises that can be reduced for a better listening environment, etc. Often, a child's IEP (Individualized Education Program) specifies that the TOD consult regularly with the regular education classroom teacher to answer questions, discuss the child's progress and provide suggestions for the classroom teacher on ways to assist the student. Many TODs who work in this capacity in mainstream settings are "itinerant" meaning that they are not based at the child's school. Instead, they may be responsible for several students at different schools in the district, and therefore travel to visit those students and schools on a regular basis. If a school district does not have a TOD, they may contract with a neighboring district or even with a TOD in private practice.

Some hearing-impaired children in the mainstream receive services directly from the Teacher of the Deaf. The teacher may work with the students on "pre-teaching" concepts and vocabulary, which a mainstreamed child will encounter in class; "post-teaching", or reinforcing vocabulary or concepts learned in class; teaching the child to advocate for him- or herself, and/or teaching higher-level language, such as figures of speech or pragmatics (using language appropriately given the situation.) The amount of support (hours per week that the teacher meets with the student), the setting (inclusion meaning in the classroom, or "pulled out" for one-on-one time) are specified in a child's IEP. The nature of the work is also specified in the form of goals.

Now you can see why this role of TOD is so very important. This teacher can assume a role as "team manager," pulling everyone together in order to support and educate your hearing impaired child when they are in school. Making sure your hearing impaired child's needs are met while at school, can be invaluable.

Written by Mary S., Teacher of the Deaf and mom to a deaf child with cochlear implants

(Edited by CI Circle News staff

Oct 28, 2008

It's NOT a Sprint...It's a Marathon!

Ok, so you have made it through surgery, have your team in place to help you with your auditory goals, and it all went by in a complete blur!

Now you are ready to go! Give me goals, GIVE ME MORE GOALS! Let me get language in this child, not today, no yesterday, must get language in, must get language in, must get language in....

Yes, it is true that the major part of the cochlear implant process is the work you do with your child after the surgery: the learning to listen, the providing opportunities for new language development etc.

BUT you are not a machine that one can program and then let loose to do your thing. You are a man/woman, a husband/wife, and a parent, oftentimes, more things to more people than just your child with a hearing loss. Don't forget the many roles you have and the fact that you are not a machine!

As one very wise mother told me very early in our journey, "it's not a sprint, it's a marathon." You can't keep going at this frenetic pace all the time, you will inevitably burn yourself out and then what good are you to the family you love?

If on the occasional day you wake up and you feel like life just dropped a huge concrete block on you, roll with it. Don't beat yourself up over the fact you should be doing this or that listening activity with your child. Cut yourself some slack, head to the park with your beautiful child and just eat ice-cream together or enjoy whatever other favourites you might have. Time spent just being, is also very important.

You know that if you feel like you are having a bad day and try to ignore it to work on those goals, your child will sense your heart isn't it, and you will just be wasting your time. Let it go for a day, recharge and get back to work with gusto the next day.

Don't forget too that there are many ways to provide listening opportunities for your child that don't involve sitting your child down and working through specific things. There are many, many ways to tap into their interests and "play with them". Well, that is how they see it, meanwhile you are building in language without them even noticing - that might be the topic for another blog, another time : - )

We parents have a built in guilt switch and so we beat ourselves up every time we feel we are not doing enough. At the end of the day all you can do is your best and your best will differ at different times with the things that life throws at you from time to time. Work with your team, let them guide you with their professional opinions on how your child is doing, not based on an off the cuff comment from another parent who probably has no clue.

Be kind to yourself and know that your child is already so unbelievably blessed, he/she has parents who care enough to educate themselves as much as they can, that is why you are here reading this. Your child already has the best advantage of all - YOU.

Posted by Naomi

Oct 27, 2008

Which Cochlear Implant Brand Should I Choose For My Child?

Decisions, decisions... One of a parent's most agonizing decisions is whether or not to get a cochlear implant for their deaf child. No sooner does one decide to go ahead with a CI than another confusing choice appears: which brand of implant to choose? It can be overwhelming. The differences between them seem to require a degree in biomedical engineering to understand. To make matters worse, your child's audiologist at the CI center reassures you that all brands work great and that the choice is entirely up to you and should be based on what will "work best for your family." But how is one supposed to know what will "work best for our family?" What if it doesn't work at all? Not working at all seems unlikely to those of us whose children already have cochlear implants, but, this can be a very real concern for someone making what seems like such a weighty decision on behalf of a child, the love of their life.So how does one choose? The audiologist's reassurance is worth noting. All brands do work to a high degree of success, and if they didn't, the implant center could not, in good conscience, offer them! Success depends far more -- even entirely -- on the follow-up care and intervention that a child gets rather than the brand chosen. A child's cochlear implant should be mapped (programmed) regularly. The child should be wearing the implant nearly all waking hours, and parents should be getting regular instruction on how to encourage listening and auditory development in their child. A young brain is an amazing thing, and if all of these criteria are met, the chances of success are very high.

"This is not helping," you say. "I need some guidance here. Help me decide!" OK. First, it's worth figuring out which brands your CI center, and especially audiologist, have experience with. A child, especially a very young one, will not be able to say, at first, what sounds good, clear, etc., so you will be relying on the audiologist's intuition and expertise in making the implant produce the best possible quality of sound for your child. Ask what implants are common among the clinic's patients. Second, look at the devices, both internal and external. Try the sound processors on your child, if he or she will let you, to get an idea of what they might look like. (My son, who has had cochlear implants for 8 years sometimes likes to try the other brands' demo processors on "just for fun" when he's in for a mapping.)

If your child is young, don't worry about whether or not he or she will like the look of the processor when he or she is a teenager. Chances are there will be newer, better-sounding processors with more features available by then -- several times over! Each CI maker seems to release a new sound processor every 4 or 5 years. Also think about which one feels most comfortable and intuitive to you, the parent, since you will be the one manipulating it while your child is young.

If you are still undecided, ask other parents what they like about their choice -- what are their favorite features about their child's CI? Some specific questions include:

* What are my options in how the implant may be worn for a baby or young child?
* How long do batteries usually last?
* What types of batteries do the processors use?
* Is the processor compatible with FM systems and how?

A word of caution here: just like there are "dog people" and "cat people" or "PC people" and "Mac people", there are also "AB people," "Cochlear people," and "Med-El people." There tends to be a great deal of brand loyalty with cochlear implants among adult CI users as well as with parents. And unlike a desktop computer, which can be replaced, once surgery is complete, there is no changing your mind. Naturally, any suggestion by another parent that you could have made a better choice hurts. This is your child, after all, and using the all the information you had and what felt right, you made the best decision you could on behalf of a person who means the world to you. Those of us who are tempted to promote our chosen brand at the expense of another ought to ask ourselves what is our true motivation? Is it out of a sense of insecurity that we want to recruit others to our choice? To reassure ourselves that we made the right one by seeing others make it too? When giving advice, before hitting the "Send" button, put yourself in the shoes of someone who recently made a different choice. Is there anything in what you've written that might offend or hurt such a person, even subtly? If it feels like you might be crossing the line, you probably are. It's also worth keeping in mind that our choice may have been influenced by what was available at the time point that the decision was made. A particular manufacturer may have had the newest device on the market. The options facing parents may be different by now or in another year or two -- things change fast in the CI world, and that's part of the excitement!

In the interest of full disclosure, my son has the Cochlear brand, and I volunteer for the company as a Cochlear Awareness Network Volunteer. I do so primarily because still, not a day goes by that I am not in awe of what cochlear implants have done for my child. I would volunteer for all three brands if I could, though I don't think the other makers would necessarily want me as an advocate because I am not familiar with their products! Last year I was delighted to be part of an foundation that, together with Advanced Bionics, awarded a cochlear implant -- the gift of hearing -- to a young child whose family's insurance would not pay for the surgery.

Perhaps another question to ask parents who have made the choice and whose kids are happily learning to listen, or are accomplished listeners, is how much time do they spend wondering if they made the right choice of brands? Chances are they don't think about it much after it's a done deal, but are absolutely thrilled with what a cochlear implant does for their child.

You can't go wrong!

(For a related story with an implant brand twist, read: The Unexpected - An Adoption Tale)

Lydia is the parent of an almost-12-year-old bilateral CI user who got his first implant at age 4 and second at age 8.

If you would like more guidance on choosing a cochlear implant for your child, join the CI Circle Discussion Group. You can search the archive for past discussions on brand choice or ask anew.

Oct 23, 2008

Paving the Way...

Rachel was born in 1987, before universal newborn hearing screening and before the internet. Her deafness was diagnosed at age two months. We left the audiologist with a diagnosis of a severe-to-profound hearing loss, having no clue what that meant or where to turn to for information. We went through a year of trial and error trying to find hearing aids and a program that worked for Rachel, that would meet our goal for her of having her become a hearing, speaking, fully participating member of the hearing world. When she was 16 months old, we spent a week at the Helen Beebe Center immersion program, became believers in the Auditory-Verbal Approach, and switched to an Auditory-Verbal therapist in Massachusetts, where we lived at the time.

Unfortunately, between ages 10 and 18 months, Rachel lost all of her residual hearing. Thus, although we were enthusiastic about the Auditory-Verbal Approach, it was not going to be possible for Rachel without any hearing. We were fortunate that our therapist agreed to keep working with us, applying the techniques of A-V to a visual oral approach. Rachel ended up being a whiz at lipreading and quickly gained a receptive vocabulary of 100 words. However, because she had no hearing, she did not understand that we spoke with our voices, and so she only mouthed words.

When Rachel was 2 years 3 months old, our A-V therapist (AVT) was speaking with an AVT in Canada, who mentioned that she, too, had a student who was totally deaf, and the family had taken her to New York University for a cochlear implant. This was in August 1989. We called immediately, took Rachel to NYU for tests in October, and the NYU team scheduled her for CI surgery eight weeks later.

We took a leap of faith deciding to implant Rachel. The implant was not yet FDA approved in children but was, instead, in phase III FDA clinical trials for children ages two and older. There was not another child in all of New England with a CI, and so we had no one at home to speak to. When we were in NY, we met a four-year-old girl with a CI who was speaking beautifully, but she had lost her hearing to meningitis at age two, and so, unlike Rachel, her brain had had access to sound before she lost her hearing. We had no idea what to expect, and so few children had been implanted at that point that the NYU team couldn’t tell us any more than that she’d be able to hear environmental sounds.

Rachel received her CI on December 21, 1989. She spent four nights in the hospital, including the night before surgery. This was standard then. A month later, we returned to NY for three days for her initial stimulation. We were thrilled when she responded to sound during the mappings, but we had no understanding at all of what programming her CI involved.

When we were home again, I had so many questions but no one to talk to other than the NYU CI team, and fortunately for me, they were a very small group then, and they readily answered all of my phone calls.

I think back now on all of the questions I had in those early years. Why was Rachel’s head control poor? Did it mean that she had CP? What was the CI surgery like? Did I need to bring anything to the hospital with me? What was the audiologist looking for during the mapping? What was a mapping exactly? What parameters was the audiologist fiddling with? What was the significance of each of these settings? How tight should the magnet be? What response should I expect from Rachel once we got home?

I can only imagine how much more confident and at ease we would have been along the way had I had a resource available like the Cicircle. I would have had parents to go to for information and to calm my worries and fears. The Cicircle listserv itself has served as a tremendous resource for parents over the past 10+ years, but the addition of the affiliated websites makes it even more so. Who better to understand the questions and concerns that parents have than other parents? Who else can anxious parents turn to in the middle of the night and receive answers within an hour when their child has swelling at home after surgery or when the device seems to feel differently than before?

Parents of children born deaf today are so fortunate to live in the information age with information so readily available. To have it all in one place on is even better. Children have already received cochlear implants at younger ages because their parents learned about early implantation from other Cicircle parents. Similarly, it is Cicircle parents who were among the first to understand the benefits of bilateral implants and to pass the word on to other parents. By parents for parents, and, as a result, for better opportunities for our children - This is what the Cicircle has accomplished and what the websites will help accomplish even more.

As a postscript, I have to end this by telling about Rachel today, as well as about her younger sister Jessica, who was also born deaf. Despite having some professionals tell us early on that Rachel would never learn to speak well, she not only learned to speak English well, but she is also fluent in French, won her high school’s foreign language award as a junior, and achieved the highest possible level of “superior” in a statewide French competition for excellence in spoken French. She also won her school’s Faculty Cup award at graduation, an award agreed upon by the entire faculty for excellence in academics, citizenship and personal growth. She is currently a junior in college majoring in travel photojournalism, is an avid traveler who has been to France six times, as well as to Italy and Israel, and soon will be heading off to Australia and New Zealand, all on her own, navigating her way independently.
(Note: Rachel is speaking French in this video)
Jessica is eight years younger than Rachel. She had the advantage of being born to parents who had been there done that by the time she came along. We were living in Atlanta by the time she was born, but we traveled back to NYU in order to have her implanted at age 15 months, nine months younger than the FDA guidelines of age two at the time and 16 months younger than Rachel was when she received her CI. Both girls were then bilaterally implanted in 2004, something we quickly learned the advantage of thanks to other Cicircle parents.

Posted by Melissa

Oct 15, 2008

The Official Blog of the Pediatric Cochlear Implant Circle

Welcome to the official news blog for CI Circle – The International Pediatric Cochlear Implant network for parents.

In 1998 Naomi Higgs (Australia) and Karen Biernat (USA) co-founded CI Circle. CI Circle arose from the need for parents to gain accurate and non-judgmental information about paediatric cochlear implants. The original group started with just 8 members and has now grown to 1700 members internationally.

In the life of each child, it is his/her parents who are there for the long haul – differing professionals may come in and out of their child’s lives but parents are the one consistent that is there all the time. As a result, parents become the keepers of a great depth of knowledge, some of it acquired from reading or attending seminars, and much of it based on direct real life experience. The information generated by this group has provided enormous support to both parents and professionals alike. If you would like to join the discussion forum of this group, joining information can be found here. For a collection of useful resources and to read the blogs of CI Circle parents, visit our website at

Posted by Naomi