More Parents’ Stories
Shared in Response to Four Questions
Some of the families who share their stories have very young children and have only recently learned of their child’s hearing loss. Other families share their answers looking back to a time when it was first discovered that their child, now five, ten, or a perhaps young adult, was deaf or hard of hearing. The names of many of the parent contributors are in the front of this book.
How and when was your child’s hearing loss detected?
- At age nine months,our second daughter was diagnosed with a moderate-to-severe hearing loss. I suspected her loss at around four months of age, when her babbling was not developing like her older sister’s had. I credit our pediatrician with taking my concerns seriously at her six-month checkup. The doctor suggested we give her some more time, then have her tested at nine months of age if I was still concerned. Our third daughter was screened at birth (at my adamant request) by the hospital where she was delivered; she has a profound loss.
- We first learned of Mallory’s hearing loss when she left the NICU. Here they informed us of her initial hearing screen, where she had passed the hearing screen in her right ear but failed in the left ear.
- Luke is adopted and did not come into our home until he was ten months old. We slowly began to notice that he did not respond to a lot of noises. He had chronic ear infections and the doctor felt that the fluid on his eardrums was causing the hearing problem. After he had his first set of tubes when he was 13 months old, we decided that there was a definite problem. The doctor was still reluctant, but we pushed for the ABR. We are really glad that we did, and feel that the early detection of his hearing loss was key to his progress.
- I did not have any problems during my pregnancy with John. After his birth, I watched him sleeping in the maternity ward. The first baby in the row started crying, then the second baby cried, then the third. Soon, all of the babies were crying except John— he slept soundly! I began to suspect that something was wrong with his hearing; however, I was told that it was too early to be concerned. Before his hearing was tested, John did seem to hear dogs barking. One of his aunts sang to him; he sang back to her. Physically, he appeared to be an alert, responsive infant. My doubts about his hearing persisted,I however. So, when he was fourteen months old, John had his first hearing test.
- We found out Jake and Jakkisha were deaf when each one was a day old. Their doctor told me that they were deaf. When I had Jake, the doctor had two nurses and an interpreter to come to my room to let me know that Jake was deaf. When the doctor told me, I was happy. The doctor was shocked by my reaction. Most of our family is deaf (his father, grandparents) so I had no problems with his deafness.
- Alex’s hearing loss was first detected in the hospital through newborn hearing screening shortly after she was born. She failed the screen initially. We were told it could be because she was so little or that she squirmed a lot. They said it happened all the time. They said she would be retested the following day and that if she passed, there would be a black sticker on her bassinet. After retesting, they wheeled in her little bassinet and there it was…a black sticker. What a relief! Shortly after that, we were told that it was a mistake – again, she had not passed. We were still told not to worry. There were lots of well- meaning people telling us stories of babies who had not passed their screening that were retested later and found to have no problem. We took our daughter to a Pediatric ENT when she was two weeks old to follow up. They did an OAE, which indicated no response to sound. The ENT thought it was still too early to tell for sure if there was a problem. He suggested we retest in a month. Another OAE at six weeks and another “no response”. While the OAEs couldn’t tell us specifically what level of hearing loss there was, at this point, we had enough reason to believe there was an issue and we needed to do some more conclusive testing. We were a little concerned about sedating Alex at such a young age, so we did a natural sleep ABR when she was three months old. This gave us the official diagnosis of a bilateral, moderate loss. While it took a while to know for sure and get the official diagnosis, without the newborn hearing screen to alert us to a potential issue, Alex’s moderate loss would probably have gone undetected for a long time.
- Ella failed her newborn screening test when she was one day old but we thought it was just congestion. Then we returned to the hospital one week later for additional testing which confirmed her hearing loss. At two weeks old, an audiologist confirmed a profound hearing loss.
- My child’s hearing loss was detected in the hospital when she was two days old because of Texas’ state law for newborn hearing screening.
- When our daughter Kennedy was between 7-9 months old, my wife suspected that she could not hear. When she was 12 months old, our daughter’s hearing was tested; my wife had requested that our pediatrician authorize the test and he did so right away. An ABR later confirmed she had a bilateral sensorineural hearing loss.
- Ryan Christopher had spinal meningitis when he was seven months old; he was in the hospital for 23 days. The doctors advised us of the many problems that may result from the disease, so we began look- ing for warning signs. My husband noticed that when he arrived home from work, Ryan no longer crawled to the back door and opened the sliding door. Thus, we suspected a hearing loss. In the two weeks before we could get an audiological appointment, we did our own “hearing tests” — calling his name, dropping pans behind him, etc. — but Ryan never turned toward even very loud sounds. At the moment our suspicions were confirmed by the audiologist, I felt as if a knife had been driven into my heart. Even though we had suspected a loss, hearing the actual diagnosis was devastating. My precious baby boy was different somehow.
- We began suspecting Ryan Edward’s loss at six months, but the pediatrician told us he didn’t think there was a problem. At one year old, our son had an ABR and it showed a profound loss. He got bilateral hearing aids at age 13 months and has had remarkable results (at least we think so).
- Our child was in the newborn intensive care unit for other birth abnormalities. There, an ABR was done when he was one week old. A second ABR was done at six weeks. Both tests indicated a severe sensorineural hearing loss.
- Rindi was born a very healthy little girl. She was a very good baby, but when she was about nine months old, we felt she did not respond to some sounds. The day before Rindi turned one year old, she had the final audiology test performed. We were told that she was severe-to-profoundly deaf and would never say a word. I told them that she laughed aloud; but they said that she would stop even that. All we could think of were all the things that Rindi would never hear or experience: she would never hear music or birds, or be able to talk on the phone, or be able to say our names. Today, at age 11, Rindi loves music — she plays the violin in the orchestra! She is still profoundly deaf, but has accomplished much in her life so far. She has truly been a blessing to our family.
- I knew Zachary could not hear when he was about 11/2 years old: I would call his name and he would not respond.
How did you share the news of your child’s diagnosis with family and friends
- The first time I said I thought John was deaf, my husband did not believe me; we were still in the maternity ward. After my suspicions were confirmed, I took the news somewhat hard. I never thought of being a deaf parent of a deaf child.
- We really didn’t make a big deal out of it. Our parents were at the hospital when we got the results of the newborn hearing screening, so we continued to update them as we did follow-up testing. Yes, we experienced some initial shock that our daughter had a hearing loss. But that did not in any way diminish our excitement, joy, and pride regarding our baby girl. That is what we shared with friends and family. When Alex got her sparkly pink hearing aids at 4 months of age, we began explaining to friends (and curious strangers) what they were all about.
- My husband told our family because I could not talk about it yet.
- We were devastated with each girl’s diagnosis, but we shared our news right away. We felt we needed, and would continue to need, everyone’s support. Our attitude has always been that while we would have chosen our children to hear normally, we are grateful for technology that can help make it easier for them to live in our society, despite their hearing loss.
- We had an older child who was hearing and we didn’t expect to have a deaf child when Kari was born. Sharing the news with my hearing family was not easy. Sharing the news with my husband’s deaf family was not a problem but they still were very surprised. Both families were very supportive because they knew we would be excellent parents to our hearing and our deaf children. When Kyle was born, I held him and immediately knew that he was deaf. I couldn’t describe how I how I knew. It was not hard to share the news with our families that time. They had a very good feeling that Kyle would do fine, just like his sister, Kari.
- We briefly explained about Mallory’s possible hearing loss because we really did not know what type of hearing loss she had until further testing. We just said that we didn’t know the extent of her hearing loss yet but that if it was a hearing loss, that this was the least of what could have been and we felt blessed!
- With all of our son’s devastating medical problems, his deafness was something with which we felt more comfortable. Deafness was not life threatening! We had an open communication with most family and friends due to the other medical issues. He has a syndrome with deafness as just one of the issues. Our family readily accepted his deafness and we knew what to expect from our reading. We were excited to learn sign language and teach our child.
- Since Sean was premature, there were weekly discussions about his health, so it was easy to bring up the hearing loss. Most people apologized.
- Most of our family and friends knew the frustration we were having with the chronic ear infections. We had already shared our suspicions that Luke was having trouble hearing some things. As we told them about the hearing loss diagnosis, I think it was easier for them because we were so positive. We were so happy to know finally just what we were dealing with so we could get the appropriate help for him.
- We just told people up front and honestly. At the beginning we really didn’t know anything so we told everyone information as we got it. We explained what an ABR was, explained the speech banana and as we learned new things, we passed on the information to family and friends.
- I was thrilled to announce that my children were deaf because that is who they are!! Some people responded with support. To those people who felt sorry for me, I just declared, “Look at me! I’m deaf, but I’m just fine and living a happy life.” If they want to continue feeling sorry for us, I’m long gone!”
- Sharing the news wasn’t hard to do because most of our family and friends were already aware of Candice Charlet’s condition since we had shared it all along. After being diagnosed with the hearing loss, she was fitted for hearing aids. Her speech developed slowly – she started speaking for the first time when she was four years old.
- We were very involved with our church and the congregation had been praying for us, so it was easy to tell them. My husband’s family lived in St. Louis; we called them and just told them that Ryan Christopher was deaf. They were already aware of the complications from meningitis. Telling family and friends was not a big issue for me. My son is now 17 years old, and as I reflect on the past 16 years, it is interesting to see that our circle of friends and family has evolved to include only those who can communicate with him through sign language; or those who accept him for who he is and are not uncomfortable being around him, us and our method of communication. We have never been embarrassed to sign in public. However, one hurtful experience does stand out in my memory. When Ryan was four years old and his sister was two, I asked my cousin to babysit so I could take my mother to her doctor’s appointment. The night before the appointment, my cousin called and cancelled because she was worried that she would not be able to communicate with him and understand him.
- As a dad and someone who was grieving and in denial, it was important for me to get on the phone and verbalize to family and friends, “ This is what we just found out about Kennedy, this is what it means and this is what we hope to do.” When people said to me, “I am sorry,” I told them instead to be hopeful because we were. In between sobs, I would get enough courage to call the next person. It helped to say what was happening and to involve family.
- My mother came to the testing with me so she knew. She told the rest of the family because I did not want to discuss it.
- We just told them! We are blessed with extended family members who have been incredibly supportive and affirming.
What were some of the first decisions you made concerning your child’s hearing loss?
- We vowed to help her with all of her abilities. It is not a time to feel sorry for yourself. It is not about you- it is about your child.
- To get hearing aids as soon as possible and I took sign language classes to learn sign. We also started the parent-infant deaf edu- cation program when she was 3 months old. Whatever we could do, we did. Whatever she needed, we got for her.
- To use hearing aids to see if they would help, whether to pursue cochlear implants or not, and whether or not to use sign language.
- Initially, we faced a decision of when to do the ABR, which we thought required sedation – not some- thing we wanted to put our brand new baby through. However, we were referred to a second pediatric ENT and learned of the natural sleep ABR. He also drove home how critical it was to get the diagnosis as early as possible so we would know exactly what kind of hearing loss we were dealing with and how to treat it. That made the decision to do the ABR as soon as possible easy. Once we had the diagnosis, with the guidance and recommendations from her ENT and audiologist, we decided to start Alex in hearing aids as soon as possible. The next important decision was what color…of course, we went with pink! Although we joke about that, it really was an important decision for us. Right from the beginning, we wanted to communicate to Alex that this was nothing that needed to be hidden. When Alex was 6 months old, we decided to begin Auditory Verbal Therapy. Although Alex was showing no signs of being delayed, our ENT encouraged us to give her this intervention early so that she might not ever get behind. All of these decisions were about getting Alex early intervention – which has made a huge impact. At 16 months, Alex is doing incredibly well.
- Upon leaving the NICU, we were told to go for further testing at an audiology clinic that was experienced in testing hearing in infants. After getting a second hearing screen done, they gave us a list of ENTs to see and said to continue testing at the audiology clinic.
- My husband and I cried, prayed, and basically experienced the complete gamut of emotions before we pulled ourselves together and started looking for help and answers to: “How do we raise our deaf son?” and “What do we do first?” We contacted our local school district because we had heard that chil- dren with disabilities began their education as early as possible. Ryan Christopher had meningitis in the spring; the following fall, we were assigned a Parent Advisor. We read as many books as we could and right away we wanted to learn sign language to communicate with him. I wanted Ryan to be able to talk to me and did not want to wait until he could by reading the words correctly on the lips. I wanted to know his feelings, thoughts, and needs in the same way parents of hearing children do.
- One of the first decisions we made concerning our Kennedy’s hearing loss was that she would be an oral communicator. My wife felt strongly that it would be too much to ask of our entire family to learn manual communication techniques. We decided that our daughter would learn to talk but we were not sure how to accomplish it. We also contacted our local ECI program and made them aware of Kennedy’s diagnosis. We were proactive and did not wait for service providers to contact us; we always contacted them first.
- The very first thing we decided was that we had to get hearing aids for Luke and to get them on him as quickly as possible. We felt that with the level of his hearing, the aids would really give him a lot of benefit At that time, we also decided that, since Luke was entering the age where he would begin to talk, we felt it was important to put the best aids on him that we could afford. We wanted him to have the best chance possible for success at speech and that has turned out to be a really good decision. We also decided that we would learn sign language. The doctors did not know what caused our son’s hear- ing loss, and therefore couldn’t tell us whether or not it would get worse. We felt that the fair thing for Luke was to learn sign language, as well as work on his speech. We did not want our son to grow up and feel as if he did not belong in either the hearing or the deaf world – by learning both oral and manual communication, he would be able to choose the environment in which he wanted to function. The sign language turned out to be a great decision. During the time when he was learning to talk, signing gave Luke an outlet for communication and took away some of his frustrations.
- I asked the audiologist immediately for all the information he had, then I made an appointment with ECI (Early Childhood Intervention) right away.
- Our first action was to get each of our children aided properly. Once they were diagnosed through ABR testing, we contacted a clinic and began the process of further audiological evaluation and fitting with aids. Our older daughter has benefited tremendously from her aids. Our youngest child received a cochlear implant last month at one year of age.
- The first decisions were how to pay for hearing aids, where to get them and how to get Wes to wear them. The most troublesome decisions were whether to choose auditory or sign.
- We did a lot of reading and research about deafness, our son’s type of loss, and our options for communications We decided to get hearing aids as soon as he was medically stable (He was having problems breathing and had a tracheostomy at four months old and a G-button for feeding.). Other decisions included enrolling in an Early Childhood Intervention program.
- We enrolled Ryan Edward in Early Childhood Intervention and started to receive services through our school district’s Parent-Infant Program. We also began to gather resources (books, Internet info, magazines) about sign language and issues about raising a deaf child. Most importantly, we began to attend any sign language courses we could find so that we could begin to learn how we will communicate with our child.
Description of information you received from professionals and advice you would give to other parents whose babies were recently diagnosed with a hearing loss.
- It is a scary road! But the resources are out there; you just have to find them. My advice to parents who are facing this news is, “Do your homework.” Find professionals that have experience dealing with deaf children. Use every contact that you can to meet other parents of deaf children and learn from them. This network will become invaluable to you.
- The first ENT told us she had a sensorineural hearing loss and that she needed hearing aids. We were not quite happy with this visit and decided to get a second opinion. We went to another ENT who gave us the care and extensive thought to Mallory as a unique case and called for further tests such as an ABR test. This was the first time we were told that Mallory had auditory neuropathy and that not much is known about this type of hearing disorder. We were told to continue testing at the audiology clinic and to speak with a cochlear implant specialist, which gave us plenty of options that we are still utilizing today. As for advice, if you do not feel good about the care or are unsure of the steps to take, especially if this is the first time you have had to deal with a hearing loss with a family member, it is always best to check all options and make sure you hear the same advice at least twice. This way you as a parent have consistency and have thoroughly exhausted all options and covered all the bases for you and your child.
- Ask questions of everyone and if they don’t know the answer, tell them, in a nice voice, that you don’t mind waiting until they find someone who can answer your question. Start a journal for your child and write down thoughts, feelings and events. Get a calendar to keep track of appointments. If you are a couple, involve your spouse, talk with that person, get them to participate, don’t make them a second- hand information recipient. If you are single, involve a friend, relative, or a mentor family. Find support and use it!
- Remember that you truly are the best advocate for your child. You know your child better than anyone else and know what they need. You are the one who will be doing the bulk of the work you CAN make your child successful!
- Early Childhood Intervention (ECI) gave me all the information that I needed to know. They contacted my home school district and a deaf education teacher came over to my house to meet Kari. They also helped me with funding to get Kari’s new hearing aids. Right now they are doing the same for Kyle. The teacher will help you to communicate with your deaf child and will also help you to contact other parents of deaf children or the deaf community. I would recommend that you get in touch with ECI and they will help you with the rest.
- I received information about ECI and what their staff could do to help Zachary function like a child who can hear. I would tell parents that there is help out there and, please get the help while they are little. Don’t put it off.
- Our child’s pediatrician sent us immediately to have more elaborate tests done. Use ALL available resources.
- I would advise parents sooner of cochlear implant information and the benefits available. Provide this at the hospital when the diagnosis is given to parents.
- The best advice we got was to “bombard” our daughter with information. Sign language, oral communication, labeling around the house, absolutely any kind of communication and “speech”. We didn’t know if she would be able to hear, but we made sure she would be able to communicate somehow.
- Don’t waste a moment in discovering the extent of your child’s loss and then getting him fitted with hearing aids. If appropriate, consider a cochlear implant. Remember that your child is the same person he was before you knew of the hearing impairment — this is just another aspect of him and it shouldn‘t change your love for him or alter your high expectations for him. Your child will need you cheering him on!
- Try to get as much information as possible. Meet other deaf individuals. Continue to read the information that is available. Set high goals for you and your child. Visit the state deaf school. Don’t rely on just one source. Deafness is very individual and there are many conflicting opinions. Also, know your rights for your child’s education.
- Use the hearing aids consistently. Even if he takes them out, put them back in. Speak closely to his ears. Don’t yell; it distorts the words. Learn how to keep the hearing aids maintained. Don’t give up. Technology has improved to help them hear and speak better. Talk and talk as much as possible. Repeat words over and over. Find something that interests them and use words to describe it. Signing with Sean did not keep him from speaking. Sean is almost three years old and rarely signs but he has an enormous vocabulary for a hearing-impaired child.
- Learn sign language, get speech therapy, and wear hearing aids. (As an adult who is deaf) it makes me happy that I can sign, talk, read lips, and wear hearing aids. Do not be embarrassed or ashamed of your children.
- With all the professionals involved (two ENTs, a pediatrician, two audiologists, our parent advisor, and a speech therapist), the amount of information was a little overwhelming – helpful, but overwhelming. Honestly, there was so much information in the beginning, it is difficult to look back and recall the details. As far as advice, first and foremost, I would say early intervention is key. Do whatever follow-up is required for you to get an official diagnosis, and really know what you are dealing with. And once you have that diagnosis, believe it. While hope and optimism are good things, don’t use them to convince yourself your baby does not have a hearing loss. This is particularly tempting when your child has a moderate loss. Your baby will do things, react to things, that will make you swear she is fine. But reply on the ABRs and hearing tests, they are a much more accurate representation of what your child is hear- ing, and what interventions she needs. Also take advantage of the resources available to you and your child. Surround yourself with the professionals who live and breathe hearing loss. Ask lots of questions, and don’t hesitate to ask again if you didn’t understand the response. Sometimes the professionals have to be reminded to speak in lay terms! Lastly, reach out to other families with similar situations. Everyone’s experience is going to be different, but it helps to learn how others dealt with their baby’s diagnosis – and to see how well their children are doing years down the road. We have met so many wonderful families who are very willing and open to sharing their experience with other.
- Understand that you will experience a period of grief and give yourself the right to grieve. This grieving period varies in intensity and duration as you experience the initial shock, then become accustomed to your child’s hearing loss and all the ways your family life changes as you adapt. (Our period of grief was about 18 months.) Understand that your child needs you know more than ever to be their advocate and their best and first teacher. Do whatever it takes to rise to that challenge. One of our greatest unmet needs has been for interaction with other hearing parents of deaf children. We can’t find any pre-existing groups and have a hard time meeting other parents.
- Remember that deaf children aren’t really different from hearing children. Most things are the same. Please be there for your deaf child. Don’t feel badly if your child is deaf. If you learn sign language, you will understand what it feels like to be deaf; I suggest that hearing parents learn sign language. If you don’t want to learn, it may make it more difficult to communicate with your child. Learning sign language is similar to learning French, Spanish, or any foreign language. * Our advice is: Be Positive, Be Patient, Have Faith, Be Persistent, Keep Appointments, Be Consistent, Follow Through, Listen to everyone, but do what you consider is appropriate in your situation because each child is unique. Do not compare your child with other children, especially his siblings. Give your child all the support you can, but teach him to be independent; turn him loose when he is ready. Let your child stand on his own and try his wings, but never be far away so that you can guide and encourage him every step of the way.
- Love your child and accept him for who he is. It doesn’t matter the method of communication you choose— just follow through and do whatever it takes to make it work. At all costs, communicate with your child. Your baby will grow up to have important ideas to share and you will want to be the first to know them.