More Stories

More Parents’ Stories

ID-100194378

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.