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           Surfing the Web with Laney Jane

October 16, 1998 was the most amazing day of our lives. We had our first child, Laney Jane. We were relieved to see she had all her fingers and toes and no physical malformations. Her Apgar scores were excellent. We were blessed with this “perfect” baby. All of the big worries that we usually read, see, or hear about (Down’s Syndrome, Spina Bifida, etc.) vanished from our conscience.

Of all the numerous problems we worried about throughout pregnancy, deafness never crossed our minds. Laney was very lucky to have been born at South Georgia Medical Center in Valdosta, GA, a hospital that conducted newborn hearing screenings. They informed us on the day we were leaving the hospital that Laney had failed her hearing test, but not to worry since many infants fail the first time due to the newness of the test and the chance of vernix build-up in her ears from birth. We really didn’t worry at all. Our nephew had been born there two months earlier and had failed also, but passed at his second testing.

We were referred to Babies Can’t Wait and six weeks later Laney was tested again with the same results. We were still told not to worry. However, after a third failed testing another six weeks later, the worrying set in. We began doing our own testing at home— clapping, banging pots, and slamming doors behind Laney’s back. She was very tricky, because there were times we were convinced she was responding, but later learned that her extraordinary sense of sight was the reason. After further testing and a visit to the neurologist, we were told that our three month old had a bilateral, severe-to-profound hearing loss.

The roller coaster of emotions was overwhelming: anger, confusion, sadness, denial. At the time, we knew of no options except hearing aids and sign language. However, after discovering the miracle of the cochlear implant and visiting The Auditory-Verbal Center, our emotions began to settle in a positive way. I remember the wonderful feeling of peace that came over me when I finally saw hope for Laney that she would one day hear and speak. I thank God for that. It is that search for hope and peace that led my husband, Lane, to construct a website about Laney and our journey as parents of a deaf child, http://www.laneyjane.com . The sole purpose of the website is to be of help to those parents of deaf children searching for options and information. We have included surgery pictures, audio clips of speech progress and other various pieces of information. We hope to document Laney’s continued progress indefinitely into the future in order to give others access to the progress that can be achieved with a cochlear implant and Auditory-Verbal therapy.

We have been overwhelmed with the interest in our site in just the short few months since its creation. We have had over a thousand visitors from six different countries and eighteen different states. We believe this is testament to the ever-growing belief that with a cochlear implant and Auditory-Verbal therapy, deaf children can learn to listen and speak. Since receiving the implant at nineteen months of age, Laney has blossomed into a lively, babbling two-year old. It is a marvelous feeling to see a light at the end of the tunnel. And it gets brighter and brighter everyday!

          There is Always Hope

Our oldest daughter, Caitlin, was born on the 8th of November 1994. We knew from that very first minute that we would not have the “perfect” little girl we had dreamed of. Caitlin was born with a severe unilateral cleft lip and palate and was not breathing. After a few agonizingly long minutes, the doctors were able to get an airway in place and her color started to return. She was listed in critical condition and was immediately transferred to Egleston Children’s Hospital. Caitlin spent the next two months in the NICU ward at Egelston fighting for her life. By the time that she was one month old, Caitlin had four major surgeries to correct heart, lung, stomach, and throat problems. The doctors continued to find additional problems as the days went on. On New Years Eve 1995, Cindy and I toasted Caitlin at her hospital bed and welcomed her to the New Year in the hopes that the worst of our problems would soon be behind us. We were wrong. Caitlin’s doctors were baffled by her case. We met with the geneticists at Egelston looking for a cause or a reason for Caitlin’s many problems. They explained to us that 3 percent of all birth defects could not be explained, and sadly, Caitlin fell into this category. Her doctors offered us no hope for Caitlin’s future. They took a “wait and see” approach. It was not known if Caitlin would ever walk, talk, or see. It was also thought that she might be mentally disabled. We found out some months later that her doctors had not expected Caitlin to live.

During her stay at Egelston, Caitlin had been given some very heavy antibiotics for a serious blood infection. Because of these antibiotics, it was decided that Caitlin should have a hearing test before her scheduled discharge. It was at this time that we learned that Caitlin had a severe-to-profound bilateral sensor neural hearing loss. Cyndy and I were crushed. After everything that Caitlin had endured during her hospital stay, this was one last slap in the face. At the time, this was the one thing that surgery would not be able to fix. Cyndy spent every night sleeping beside Caitlin’s bed in the tiny, cramped hospital room. While Caitlin slept, Cyndy would spend her time in the hospital’s medical library reading through medical books searching for a reason and other treatment options for the crisis of that day.

During one of her reading sessions, Cyndy happened on a little known syndrome called CHARGE. Each letter represented a different anomaly, and Caitlin had every one. It took a flight to Portland, Oregon, for a meeting with the Director of the CHARGE Foundation to confirm Cyndy’s diagnosis. It became a running joke that Cyndy knew more about Caitlin’s condition than the doctors did. It was common for her to present the doctors with 10-15 written questions while they made their rounds. It got to the point where the doctor would unleash Cyndy on his medical students and then sit back and watch them squirm. They even joked about offering Cyndy a job.

After Caitlin was finally discharged, Cyndy applied that same tenacity in reading everything she could find on deafness. We didn’t feel that sign language was a pursuable option. We wanted Caitlin to be able to hear and speak. We spoke with a representative from Georgia PINES who told us we were expecting too much. We were told that Caitlin probably would never speak and the sooner we started sign language, the better. We then checked into The Atlanta Area School for the Deaf and felt very comfortable with the staff and surroundings. However, they were not very encouraging when we voiced our intention for Caitlin to hear and to speak.

Through Caitlin’s case manager at our county’s Early Intervention Program, we heard about a place called The Auditory Education Center in Midtown. We made an appointment to check it out. After meeting with Mary Ann Costin and observing some of the children during their therapy sessions, we finally had some reason for hope. These children were hearing, and they were talking. We knew that it was going to be a long, hard road, but we also knew that this was the approach that could offer Caitlin the greatest potential benefits in the long run. We enrolled Caitlin in the program and fitted her with hearing aids at four months of age. We were cautioned about expecting too much because Caitlin had so many other problems to deal with. Caitlin slowly, but steadily, made progress. On her first birthday, our cat Simon, strolled past Caitlin’s highchair. Caitlin looked down, pointed at Simon, and said, “Meow.” This was her first word and we all had a good cry

Over the next four years, Caitlin continued to make progress, while at the same time baffling all of her therapists. It turned out that she was proving to be the exception to all the rules. In the summer of 1999, we asked about the possibility of having Caitlin evaluated for a cochlear implant. She was evaluated by Jolie Fainberg—who had given Caitlin her first hearing test—and Dr. Wendell Todd. We were told that Caitlin could not be put on the implant list because her hearing was too good and that there were some unanswered neurological questions. Needless to say, we were very disappointed. Although Caitlin continued to make progress, her progress was sporadic.

In the late spring of 2000, Dr. Todd called to inform us that Caitlin had been reevaluated and was now considered a candidate for the implant. We were totally taken by surprise. We had been waiting for five years for this, and now we were starting to have second thoughts. We knew that, again, this would offer Caitlin the greatest hope to hear if the implant was successful, but this would also be her 20th surgery. We decided to go with the implant, and surgery was scheduled for August, just as she would be starting Kindergarten. Scheduling and insurance conflicts pushed the date back to September 19. We tried to prepare Caitlin for the big day by telling her what would be done, how it would be done, and that she would be able to hear afterwards.

Caitlin had never really handled her previous surgeries very well. This one was to be the exception. She was very excited and started counting the days. She would tell everyone she knew that she was going to get an “ear implant” so that she could hear. One day before her surgery, Cyndy asked Caitlin what was the first sound she wanted to hear after her implant was turned on. Caitlin thought for a moment and said, “I want to hear the cars going vroom vroom, wind blowing in the trees, rain in a puddle, and a baby crying.” It was time for another good cry.

September 19th arrived, and the surgery went perfectly. Dr. Todd told us later that the surgery had taken quite a bit longer than he had expected due to the fact that Caitlin’s internal anatomy proved to be a challenge. Her facial nerve could not be traced on the CAT Scan and her jugular vein was in the wrong position. We were discharged the next morning and headed home.

Caitlin seemed to be pretty disappointed. She had been under the impression that she was going to be able to hear right away. Cyndy and I had spent so much time preparing her for the surgery, we had forgotten to explain post surgery wait time to her. Caitlin returned to school three days later, and showed her scar and shaved head to all that would listen. The other children in her class were very interested and accepting. One little boy even said, “Cool! Look at that great scar!”

Finally, the big day had arrived to have Caitlin’s implant mapped and turned on. Throughout the procedure, Caitlin would put blocks in a bucket to indicate that she had heard the various tones. Jolie said that the implant was working well, and asked if we were ready to turn it on. This was the moment that we had been waiting for all her life. Would she have an adverse reaction to all the new sounds she was about to hear, or would she react like a giant light switch had been turned on? I had the camcorder all set up and the whole family crowded around. Jolie turned on the implant and spoke to Caitlin. There was no noticeable response from Caitlin, other than to turn and look at Jolie, and say a few words. I was pretty disappointed. I had expected a lot more of a reaction. Jolie noticed my disappointment and said, “But Caitlin’s not wearing these?” and held up her hearing aids. It hadn’t dawned on me that she had been hearing with just her implant! She was now hearing with an ear that she had never really used before.

On the way out of the hospital, I held Caitlin’s hand. Suddenly, in the middle of a crowded hallway, Caitlin stopped with a confused look on her face. She looked around quickly, grabbed my wrist, and put my watch to her implant. When I asked her what she heard, she said, “Tic toc, tic toc.” I knelt down, held her in my arms, and cried. We spent the rest of the day listening to the wind, thunderstorms, and birds singing on some CDs that my mother had sent.

It has been several months since Caitlin’s implant was turned on. We have witnessed many wondrous things that before we could have only dreamed about. Caitlin roams around the house listening to all her new sounds asking us, “Hey, what’s that sound?” Socially she has blossomed, and she has become more interested in her surroundings. Her speech clarity and comprehension have increased dramatically. We can finally have a conversation with our daughter, and know that she will not be spending the rest of her life in silence.

          Love Has a New Name

That is what a handmade card read from my best friend. Loving August at first was very difficult, I mostly felt sorry for him. No one in the delivery room would tell me anything because they knew I was a Speech-Language Pathologist. Later, my husband, Craig, told me that he had a little hole in his mouth but not to worry. “Scottish Rite here we come,” I thought to myself. But when Craig said he was in another nursery, I really flipped out. The next two weeks were surreal as I traveled to the hospital everyday and pumped breast milk trying to feed August. Finally, they inserted a Naso Gastric (NG) tube into him, and taught me how change it.

Nothing could have prepared us for what lay ahead. August was diagnosed with Stickler’s Syndrome and Pierre Robin Sequence. His chin was small, therefore he had to be held upright most of the time so his tongue would not occlude his airway. Finally we brought this tiny little boy home to his 15-month old sister. But there was no excitement, and no joy. No one came by to see our new baby.

August’s first year was a blur to me, because I cried most of the time. My days were consumed with tube feedings, pumping, administering medicine and driving to Scottish Rite Children’s Medical Center (SRCMC). I screamed and cried a lot and our daughter, Madi, witnessed it all. There were times I thought I couldn’t go on. Craig had the difficult task of trying to hold me together.

When August was two months old, he contracted Respiratory Syncytial Virus (RSV). On our kitchen counter there was a tube feeding machine, a breast pump and a nebulizer! He was throwing up all the time! Every Thursday and Saturday I would drive to the pediatrician’s office to weigh him. My sanity directly correlated with his weight gain and the days we had to change his NG tube. My poor husband.

At six months and just over 10 lbs., August was ready for oral surgery to close the cleft palate and also insert ventilation tubes. Five days later he went home. He wasn’t eating anything orally. We began feeding him like a baby bird with a dropper, and then when I was sure he wasn’t sore anymore, I gave him a bottle and never looked back! I was so proud of him.

That would be nice if that was the end of our story, but that was only the beginning. When we brought August home, I noticed that he wouldn’t pull away from the bottle when our daughter would be right in his face. It was as if she wasn’t there. Our ENT, Dr. Terrance Murphy, had given me some information on Sticklers, and it read that 20% of the patient’s have a sensor neural hearing loss that is also degenerative. I prayed, “Lord, please cut me some slack.” Well, He didn’t. August was diagnosed with a moderate to severe hearing loss. It was at that point I think that I really hit rock bottom. Everyone tried to cheer me up, the Minister, my friends that were hearing impaired, family, etc. I wouldn’t talk to anyone on the phone. I just felt numb inside.

In the next six months August began occupational and physical therapy, and by his first birthday he had hearing aids and was able to sit up by himself and scoot around. Sometimes I would just feed him while he sat on the floor. He would take a bite of food and then spin around! I was beginning to laugh again. I remember not even wanting to have a first birthday party for him because his first year was so sad. But I gritted my teeth and endured it.

After that birthday it was therapy, therapy, therapy, and something magical happened. I had fallen deeply in love with my baby. Things were finally looking up. At this time I must say a big thank you to Early Intervention. Craig and I would never have been able to keep up financially if it were not for that marvelous organization. Springtime came, and August needed glasses. Once receiving them, he really started moving! A couple of months before his second birthday he started walking. We were so thrilled. Shortly after that he was discharged from both the physical and occupational therapies.

Don’t worry, I haven’t forgotten AVC. We had no idea which “world” to raise August in; the deaf world or the hearing world. Then a former boss of mine, Winn Hill, called and said to check out AVC. Craig and I went for a visit. I thank God everyday for that call. I really didn’t understand what was going on, but we signed him up anyway. Here I am a speech pathologist, and I certainly don’t remember studying the Auditory-Verbal approach in my master’s program. All of this was new to me as well as Craig. I never thought August would speak, and my faith was at an all time low.

The first things AVC did was access his hearing potential with programmable hearing aids. Alison Tucker lovingly walked us through the program and never laughed when I would ask, “Is he ever going to call my name?” Every day is like Christmas when August comes up with something new. His pediatrician is always amazed at his progress. August is doing well with his hearing aids and rarely fusses when it’s time to put them on. He speaks in full sentences and is able to make all his wants and needs known. He will be in a two-year preschool class at our church and really loves interacting with other children. So far he hasn’t let anything stop him, he’s a typical three year old with an attitude.

Alison says he’s doing so well that it is time to go, and Mommy is having a hard time with the transition. I just can’t believe it! He has made such wonderful progress in only three short years. I could not have made it without the support of the AVC. They have been a terrific extended family for us. We will forever sing their praises! Thank you all! [Editors note: August had so much residual hearing that his language and speech development began to flourish with the combination of the programmable hearing aids, A-V training and the diligence of his wonderful parents. Consequently, after only two years in the A-V program, August is age appropriate in speech and language skills. He is one amazing little boy.

          Our Struggle with Insurance Companies

When we first found out that our oldest son, Jake, was deaf, we set out to understand all of the options available to us. We were initially told that we needed to purchase hearing aids and to learn sign language. We trusted the professionals to lead us in the right direction, and it seemed appropriate because all I had ever seen deaf people do was to use sign language. I remembered that the former Miss America, Heather Whitestone, was deaf. However, I was told she was a special exception and could hear better than a deaf person could.

We struggled with education issues and accepted the fact that those very expensive hearing aids were not doing him much good. The first time I heard of the cochlear implant was while reading a magazine in a doctor’s office. I immediately called our audiologist and asked what steps we needed to take to get one for Jake. I was told that it was for the “deafest of the deaf,” and that Jake had a small amount of residual hearing. Plus, I would have to travel a minimum of 3-4 hours to an implant center for the evaluation and surgery. I guess they assumed that because the mapping took many weeks that it would be too difficult to manage. Believe me, I remember my response well, “I would blast off in a rocket every morning and fly to the moon and back each day if it would help my son hear better.” They obviously did not know me very well.

When we finally got an appointment with a pediatric ENT who did implant surgeries, we traveled the 4 hours to see him and his audiologist. They gave us a lot of encouragement, and began to file the needed paperwork to get the ball rolling with our insurance company. In the meantime I began meeting other children and adults with cochlear implants. It was amazing to see what they were capable of. The adults with late onset of hearing loss were the greatest source of hope. They knew what it was like to hear normally and loved their cochlear implants.

Our insurance carrier, a local HMO affiliated with Blue Cross and Blue Shield, gave us a resounding “no” to our request. We were devastated. I set out right away to find out why they refused to pay while BCBS of Florida was currently paying for clients to have the implant surgery. I was told that it was not listed in the coverage section of their plan. They would never agree to the surgery because four patients had previously requested the same thing, and it would not be cost effective to start now because more would start asking for this very expensive procedure. Well, I decided not to take “no” for an answer. I began my formal appeal in writing. The request was denied. I contacted an attorney who told me it would be an impossible task to get them to agree to something that was plainly listed as an exclusion. We were seriously considering raising the money to pay for the surgery ourselves when our second child was born, and was also diagnosed with the exact same hearing loss. We were sure that even if we raised the money to pay for one, it would take many years to pay for a second. How could we offer such an advantage to Jake and not to Jordan?

Because of the responsibility in raising a second hearing-impaired child, we got sidetracked for a few months. I continued to write letters, and stay in touch with the surgeon. They suggested I contact one of the cochlear implant companies. We decided on The Cochlear Corporation’s Nucleus 22, which was all that was available at the time. They have a separate management company with a different name to help with various issues. One of their representatives sent me a list of things to point out to the insurance company. Some of the issues were that they paid for other implantable devices such as pacemakers, retinas, and orthopedic devices. They also covered prosthetic devices like limbs and ambulation equipment. She also mentioned that they had changed their list of coverage for other things in the past based on new research.

I contacted the attorney I had previously spoken with, and asked if I could use his name in the letter I planned to write. After hearing my plan, he agreed and said he’d be happy to represent us in the event this went to court. My letter began by pointing out the safety issues of being a deaf child. Some hearing would make crossing the street and eventually driving a car safer. I told them that it didn’t seem fair that Medicaid paid for cochlear implants and other insurers paid for similar procedures. I pointed out that the underprivileged were getting this wonderful advancement while the middle class family, which we felt we were, could only sit back and watch. I mentioned the implantable and prosthetic devices the representative told me about. I closed with the fact that by telling us they would not pay for cochlear implants for my children, they were discriminating against deaf children. We felt that it was discrimination due to the cost of the procedure and follow-up and that was cause for a class action lawsuit. I knew that the very word discrimination was frightening to many companies.

Two days after I sent my letter by certified mail, I got a call from the HMO. They would agree to pay for the surgery, the initial external equipment and the surgeon’s fees. They also agreed to pay for the initial mapping, which could take up to six months. That was all I had ever wanted to begin with. Jake was implanted four months later and Jordan got his the month he turned 18 months old (18 months was required by the manufacturer at the time). I have since heard that 12 other patients in our old HMO have now received cochlear implants. I don’t know about them, but it’s been the best investment of time and money our family has ever spent.

          Chase's Story

Two weeks before Chase turned two, we had some friends over for dinner. My husband, Dan, was holding Chase, and our friend, Ken was calling his name. Chase did not respond. Ken said, “I wonder if he can hear?” “Of course he can hear,” I said. That night I started to worry and could not sleep. I kept going over everything in my mind, anything that would tell me Chase could hear. But, there was nothing concrete. Everything I thought he heard, he could also see.

The next morning I called the pediatrician’s office and told them I wasn’t sure Chase could hear. The pediatrician advised me to see an Ear, Nose and Throat specialist and also have his hearing tested. When I made the call, I was told the soonest appointment was two months away. I explained that my son may not be hearing, and I needed to see someone much sooner. We were able to get an appointment two weeks later. We spent two months having Chase tested. With each test and doctor, the diagnosis kept getting worse. The day they did the Auditory Brainstem Response test (ABR), I could not believe that the nurse was telling me that he had severe to profound hearing loss in both ears. She was talking about hearing aids while Chase was sleeping, cuddled up in my arms. I wanted someone to say, “Yes, there is a problem but we can fix it.” I never imagined what we were in store for.

After leaving the doctor’s office, I went down to the parking lot, called my husband from my cell phone, and completely lost it. I cried the whole way home. I kept thinking, how could this be? My daughter, who was 10 months old, could hear. She responded to her name and would awaken at the smallest noises. How could our firstborn have a severe to profound hearing loss? There was no history of hearing impairment on either side of our family.

The ENT put me in touch with Babies Can’t Wait. I spoke with Shirley Pearson the next day. She talked about programs and our options. When she mentioned AVC, and the Auditory-Verbal approach, I said, “That is what I want.” She gave me Mary Ann Costin’s number, and I called her right away. I remember talking to Mary Ann for over an hour. She explained what other programs did in their approach, and how AVC differed. I knew in my heart that this is what I wanted for my child.

Dan and I met with Mary Ann and watched some children during their therapy sessions. Mary Ann talked about something called a cochlear implant. I told her that I had seen a cochlear implant brochure in the ENT’s office but was told Chase was not a candidate. Mary Ann disagreed and gave me the names and numbers of doctors who performed the surgery in Atlanta. Not only did we take the papers and sign up immediately for AVC, but we also started calling the surgeons to get appointments.

When we met with the doctors, I was very disappointed at the time frame we were given. Chase was already 29 months old, and his baby sister was already speaking in sentences. In late January, Chase developed an ear infection for the first time in his life, and it wouldn’t go away. We found out he was allergic to his hearing aid ear molds. Of course this made me want the surgery even sooner. We chose Dr. Todd to do the surgery and a date was finally set for April 7th . Meanwhile, Chase had one ear infection after another. Dr. Todd discovered that not only was he allergic to his ear molds, but also to the medication the pediatrician had prescribed to treat his ear infections. The next two months prior to the surgery were a struggle. I had so many ups and downs, and there were several occasions when we thought Chase’s surgery was going to be postponed. I kept fighting because I just knew this would make a big difference for my son.

Finally April 7th arrived, and off we went to the hospital. I was not as nervous as I thought I would be. I believe God gave me peace through each struggle to get this date set. I knew Chase was going to be fine. April 28th was Chase’s "turn on" date. We were so excited and at the same time very nervous. I had heard stories of children crying and not accepting the implant right away. Boy, were we surprised. When Jolie Fainberg, the cochlear implant audiologist, was mapping his implant, Chase could only hear a few beeping noises at first. His eyes lit up and he started saying “more.” He had learned that word from reading our lips and had said it for about six months. When she turned his implant on, he was even more excited. He was giving us ‘thumbs up,’ laughing and asking for “more.”

Chase has progressed very well. He is adding more words to his vocabulary quicker then we can keep up. We are astounded at the difference this has made in his life. Now that he can hear, he has become much more calm. His sister is a good role model for his language skills, and they love to sing together. Dan and I are expecting another little boy the end of January. Chase tells everyone, “There is a baby in Mommy’s belly.” We are so proud of Chase and all that he has overcome already. We cannot imagine where he will be in another six months.

           Greetings from New Zealand

Kia ora! That’s Maori (native New Zealand language/culture/people) for greetings. Yes, I am writing from the Land Down Under, as I have been studying here, at the University of Otago in Dunedin, for the past five months or so. Exams are finally coming to an end, leaving me with five weeks to bum around the country before returning to winter again (that’s three in a row, I might add…).

But, this is supposed to be about my experiences with my cochlear implant as my one-year anniversary (yes, it’s true, my implant really is my soul mate) quickly approaches. It’s hard to put into words how amazing my experiences with my implant have been over the last ten and a half months, and especially since I’ve been in New Zealand. Perhaps some of my favorite sounds could do it better justice—like the sounds of boiling water, walking on pebbles, my mom’s voice traveling thousands of miles through the phone line, the crunch of a crisp apple, any sort of tapping or clicking noise (the keyboard and mouse, those “clicky” pens, the car blinker, high heels dancing along the concrete sidewalk (although, I haven’t heard that one in a while, as hitting town barefoot is more the Kiwi style), the fizz sound when you open a Coke bottle, and, of course, all those bleating sheep that are found everywhere in this country.

That’s not to say, though, that I don’t still have trouble in some situations (what fun would life be if I never misheard anything?).  For example, when the Manager of the Disability Information and Support Office at the University of Otago asked me to show another staff member my “bionic parts,” this would not have been a problem had I not heard “body parts.” The Kiwi accent has caused much confusion for me over the semester, but not without plenty of humor along the way. I couldn’t help but laugh when one of my Kiwi flat mates asked, when I explained that the implant is individually programmed to fit each patient’s needs, if my implant was programmed to transform the Kiwi accent into an American one. I said, “No, it wasn’t quite that advanced.“ But, after all, I didn’t travel across the world to be surrounded by American accents!