Personal Stories from Parents who have Deaf/Hard of Hearing Children
(as of Fall 2010)
Family #1: Half n Half. 2 hearing kids, 2 DEAF kids
Hello. We are the parents of four children, two of which have a hearing loss.
The first is a girl-Kayla. We found out she could not hear when she was 2 years old. We took her to the doctor and were referred to an ENT then to a nearby University speech and hearing clinic (which I believe is no longer there). They found she had a severe to profound hearing loss and determined she would benefit with hearing aids. We were told it was very unlikely that she would learn to talk. To our amazement she has excelled in everything she has put her mind to. When we found out she could not hear and we put hearing aids on her for the first time she was looking at a book as I was reading to her. It just happened to be a picture book and the picture was that of an apple. All the way from the clinic she kept saying “appi, appi”. We were so thrilled—and her hearing started improving everyday as she got older. At first she did not want to wear the hearing aids, but after about 2-3 weeks, she realized that she could hear better with them on. One time when she was about 3 years old she flushed her hearing aid down the toilet. She was very upset, but could not tell why she did this. She was introduced to sign language at the age of 3 and she received a lot of help from the University Speech and Hearing clinic, the public school system, and various speech therapists. She has since graduated high school and is a junior at college with an Associate’s Degree and is working on her Bachelor’s Degree in Deaf Education and eventually her Master’s Degree in Elementary Education. As parents we are very proud of her and her accomplishments. She is an also very good advocate for herself.
We also have another child with a hearing loss-Josh. He was diagnosed at birth, but did not get hearing aids until he was 4 ½ years old. His speech was developing pretty well up to that point. His hearing loss was diagnosed as a high frequency loss and was harder to aid than his sister. He also had a lot of ear infections as an infant and had PE tubes (pressure equalization tubes) put in twice by the time he was 3 years old. At first he did not want to wear the hearing aids because he said that he could well and did not need them. He also went through the speech and hearing clinic at the same nearby University his sister went to. We were told he would benefit from cued speech, but it was very difficult and he never got the hang of it. He has received a lot of support from the public school system. He started learning and using sign language at the age of 14. He excels in things that are “hands on” and no so much in things that involve a lot of reading, reading comprehension and vocabulary.
We are very fortunate that we had the support from the community and other family members. As parents, we always tried to be involved in our children’s education and to be an advocate for them when they were younger. We were told their hearing loss is genetic, with recessive genes from both parents and they genes just met up. There is a stronger family history of hearing loss on their father’s side, with some hearing loss on the mother’s side due to age and illness.
The first is a girl-Kayla. We found out she could not hear when she was 2 years old. We took her to the doctor and were referred to an ENT then to a nearby University speech and hearing clinic (which I believe is no longer there). They found she had a severe to profound hearing loss and determined she would benefit with hearing aids. We were told it was very unlikely that she would learn to talk. To our amazement she has excelled in everything she has put her mind to. When we found out she could not hear and we put hearing aids on her for the first time she was looking at a book as I was reading to her. It just happened to be a picture book and the picture was that of an apple. All the way from the clinic she kept saying “appi, appi”. We were so thrilled—and her hearing started improving everyday as she got older. At first she did not want to wear the hearing aids, but after about 2-3 weeks, she realized that she could hear better with them on. One time when she was about 3 years old she flushed her hearing aid down the toilet. She was very upset, but could not tell why she did this. She was introduced to sign language at the age of 3 and she received a lot of help from the University Speech and Hearing clinic, the public school system, and various speech therapists. She has since graduated high school and is a junior at college with an Associate’s Degree and is working on her Bachelor’s Degree in Deaf Education and eventually her Master’s Degree in Elementary Education. As parents we are very proud of her and her accomplishments. She is an also very good advocate for herself.
We also have another child with a hearing loss-Josh. He was diagnosed at birth, but did not get hearing aids until he was 4 ½ years old. His speech was developing pretty well up to that point. His hearing loss was diagnosed as a high frequency loss and was harder to aid than his sister. He also had a lot of ear infections as an infant and had PE tubes (pressure equalization tubes) put in twice by the time he was 3 years old. At first he did not want to wear the hearing aids because he said that he could well and did not need them. He also went through the speech and hearing clinic at the same nearby University his sister went to. We were told he would benefit from cued speech, but it was very difficult and he never got the hang of it. He has received a lot of support from the public school system. He started learning and using sign language at the age of 14. He excels in things that are “hands on” and no so much in things that involve a lot of reading, reading comprehension and vocabulary.
We are very fortunate that we had the support from the community and other family members. As parents, we always tried to be involved in our children’s education and to be an advocate for them when they were younger. We were told their hearing loss is genetic, with recessive genes from both parents and they genes just met up. There is a stronger family history of hearing loss on their father’s side, with some hearing loss on the mother’s side due to age and illness.
Family #2: Little Miss Lily
Lily was diagnosed with hearing loss as a newborn through the newborn hearing screening at the hospital. Neither my husband or I have any history of hearing loss in our families and I had a healthy, uneventful pregnancy so the initial diagnosis was shocking. The people at the hospital and our friends and family tried to reassure us that her degree of loss wasn't too bad or that maybe it was just slow to develop, but after a week or so of experimenting with sounds at home, we knew her loss was significant. The hospital referred us to a local ENT for further testing and we went around her 1 month birthday. The ENT blew it off somewhat, suggesting that maybe she just had fluid in her ears or that her ear canals were small but with our urging, he had his audiologist do some testing. Fortunately, the audiologist was able to show what our "parents' intuition" already knew - Lily was born with bilateral profound hearing loss. We were then referred to a different audiologist in our area who has more experience with babies for more testing.
Through this audiologist, we were able to get hearing aides by the time Lily was 2 months old. We were also told she would be a good candidate for cochlear implants around her 1st birthday. We had talked about CI from the time we knew her loss was significant and were happy to know this was an option for us. We continued to go for regular testing with her hearing aides and by the time she was old enough to react to sound if she was hearing anything, it was obvious that the hearing aides were not benefiting her. We then began the road to cochlear implantation. After talking with other families, doing a great deal of research, and talking to several surgical programs, we decided to have Lily's surgery done at Brenner Children's Hospital in Winston-Salem, NC. We felt an instant connection with everyone in the program and were confident in trusting our baby to their care. Through the doctors there, we were referred for genetic counseling where we learned that Lily's hearing loss is non-syndromic (she has no other developmental issues or delays) and is likely a recessive linked hearing loss for which my husband and I are both carriers. That means any other children we have will have a 25% chance of hearing loss. While we would be excited to have a hearing child, we also feel very prepared and comfortable with having a deaf child and would welcome the opportunity to have another deaf child.
Two weeks after her first birthday, Lily had bilateral cochlear implant surgery and handled it beautifully. She bounced back from surgery quickly and was "turned on" (had her external processors activated) a month later. Her first experience with hearing was not as exciting as we might have hoped and she didn't react much at first. Over the next few days and weeks, however, we began to see her very obviously "hearing" and enjoying it! She learned her name, a few animal sounds, and really began to explore making and reacting to sounds. By the time of her first mapping session, one month after being "turned on," her audiogram showed that she was able to hear three frequencies she never heard with her hearing aides and that she could hear most sounds in the mild hearing loss range. She has since had a second mapping session and hears almost all of the tested frequencies within the normal hearing range!
Communication-wise, we began teaching Lily and ourselves American Sign Language as soon as we came home from the hospital. We have used a variety of resources, from Signing Time videos, books and websites to learn ASL. Around 6 months of age, Lily began signing back to us. Her first signs were "more," "eat," and "light." Within a few months, her signing vocabulary exploded and she was signing 25-30 signs. She could communicate so much more than her hearing peers who maybe said three or four words. At 16 months, she now signs 50-60 words and picks up new signs almost immediately. Now that she is hearing, we are placing more emphasis on spoken words, but have not eliminated signing. We have chosen a Total Communication model with Lily. Our belief is that she should have every communication tool available to her. We hope that she will be fluent in both speech and ASL. Her speech is progressing quickly - she says "Mama," "Dada," "Buh - for ball" "Muh - for milk" and ~ 30 animal and object sounds. Assuming her progress continues, she may be caught up to her peers by the time she starts kindergarten.
We have not accomplished all of this on our own. Since she was two months old, Lily has received Early Intervention services. A therapist comes to our home once a week to work with her and help teach me what activities we should be working on at home. Since her surgery, we have also been going twice a week to the Speech and Language Clinic at Radford University. There, Lily works with graduate student in Speech Pathology. We have also had tremendous support from friends and family who have all been willing to help in a variety of ways. I hope to repay all of the kindness we have received by paying it forward. My husband and I help lead a Sign Language education program now at our church and I visit a friend's 4th grade class several times a month to talk about our experiences and teach sign language.
Through all of our emotions and experiences, the most prevalent feeling I have is gratefulness. I feel so thankful to have the privilege of parenting our amazing daughter and to have been entrusted with her care. We are also very thankful for all of the doctors, nurses, therapists, friends and family who have gotten us to where we are today and will help us continue to progress.
Through this audiologist, we were able to get hearing aides by the time Lily was 2 months old. We were also told she would be a good candidate for cochlear implants around her 1st birthday. We had talked about CI from the time we knew her loss was significant and were happy to know this was an option for us. We continued to go for regular testing with her hearing aides and by the time she was old enough to react to sound if she was hearing anything, it was obvious that the hearing aides were not benefiting her. We then began the road to cochlear implantation. After talking with other families, doing a great deal of research, and talking to several surgical programs, we decided to have Lily's surgery done at Brenner Children's Hospital in Winston-Salem, NC. We felt an instant connection with everyone in the program and were confident in trusting our baby to their care. Through the doctors there, we were referred for genetic counseling where we learned that Lily's hearing loss is non-syndromic (she has no other developmental issues or delays) and is likely a recessive linked hearing loss for which my husband and I are both carriers. That means any other children we have will have a 25% chance of hearing loss. While we would be excited to have a hearing child, we also feel very prepared and comfortable with having a deaf child and would welcome the opportunity to have another deaf child.
Two weeks after her first birthday, Lily had bilateral cochlear implant surgery and handled it beautifully. She bounced back from surgery quickly and was "turned on" (had her external processors activated) a month later. Her first experience with hearing was not as exciting as we might have hoped and she didn't react much at first. Over the next few days and weeks, however, we began to see her very obviously "hearing" and enjoying it! She learned her name, a few animal sounds, and really began to explore making and reacting to sounds. By the time of her first mapping session, one month after being "turned on," her audiogram showed that she was able to hear three frequencies she never heard with her hearing aides and that she could hear most sounds in the mild hearing loss range. She has since had a second mapping session and hears almost all of the tested frequencies within the normal hearing range!
Communication-wise, we began teaching Lily and ourselves American Sign Language as soon as we came home from the hospital. We have used a variety of resources, from Signing Time videos, books and websites to learn ASL. Around 6 months of age, Lily began signing back to us. Her first signs were "more," "eat," and "light." Within a few months, her signing vocabulary exploded and she was signing 25-30 signs. She could communicate so much more than her hearing peers who maybe said three or four words. At 16 months, she now signs 50-60 words and picks up new signs almost immediately. Now that she is hearing, we are placing more emphasis on spoken words, but have not eliminated signing. We have chosen a Total Communication model with Lily. Our belief is that she should have every communication tool available to her. We hope that she will be fluent in both speech and ASL. Her speech is progressing quickly - she says "Mama," "Dada," "Buh - for ball" "Muh - for milk" and ~ 30 animal and object sounds. Assuming her progress continues, she may be caught up to her peers by the time she starts kindergarten.
We have not accomplished all of this on our own. Since she was two months old, Lily has received Early Intervention services. A therapist comes to our home once a week to work with her and help teach me what activities we should be working on at home. Since her surgery, we have also been going twice a week to the Speech and Language Clinic at Radford University. There, Lily works with graduate student in Speech Pathology. We have also had tremendous support from friends and family who have all been willing to help in a variety of ways. I hope to repay all of the kindness we have received by paying it forward. My husband and I help lead a Sign Language education program now at our church and I visit a friend's 4th grade class several times a month to talk about our experiences and teach sign language.
Through all of our emotions and experiences, the most prevalent feeling I have is gratefulness. I feel so thankful to have the privilege of parenting our amazing daughter and to have been entrusted with her care. We are also very thankful for all of the doctors, nurses, therapists, friends and family who have gotten us to where we are today and will help us continue to progress.
Family #3: Adopted Lauren
Lauren's Dad and I adopted her from Bogota, Colombia, when she was six months old. At the time, we did not know that she was deaf and since we had no other children previously, we had nothing to compare things to. We stayed in Colombia for five weeks before returning to the United States. For the entire time we stayed in a house with other couples that adopted babies, and we had Lauren with us from day one, taking care of her and bonding with her. I noticed almost immediately that she was not responding to us, but thought that it was due to the fact that she had been in an orphanage for the first six months of her life and was used to tuning things out.
After returning to the United States, I brought her to the University of Minnesota to be examined by a group of doctors that specialized in giving a thorough examination of adopted babies from foreign countries. I mentioned my concerns about her hearing and although they didn't give her any hearing tests, they recommended I take her to an Ear, Nose & Throat doctor and have an audiologist test her. In the meantime, I was trying to pay attention to Lauren's reactions on a day-to-day basis. I was convinced that something with her hearing wasn't right when she wouldn't react when I was vacuuming in her room while she was awake in her crib. She would only react when she saw me. It was obvious to me that she didn't hear the vacuum.
Lauren was a very loud baby, letting out a lot of shrill screams, when she was happy and when she was not so happy. I think that it was her way of expressing herself without words.
On the direction of the U of M Physicans, I took her to an ENT and had her tested when she was 12 months old. The test is performed on babies while they are sleeping so I had to take her in when she was due for a nap. They hooked up numerous electrodes on her head and were able to get a fairly accurate test on her level of hearing. She was diagnosed in the profound category in her right ear and the severe category in her left ear. I remember walking out of the doctor's office with Lauren, putting her in her car seat in the backseat, getting into the driver's seat and tears were rolling down my cheeks. I felt so bad for her, but then I looked in the backseat and she was happy as a clam playing with her toy, and I immediately changed from being sad to getting the attitude that I was going to do everything possible for this child that I could do.
Lauren was fitted with hearing aids shortly after that. We went through a period of her trying to get used to them. She did not like them at first, yanking them out of her ears dozens of times a day. Finally, she got to the point of leaving them in.
Minnesota is an excellent state for providing services for deaf/HH children. We got the school system involved immediately, having home visits from a teacher of the deaf/HH a couple of times a week. Her Dad and I decided that we would use any and all means possible for communication with her - i.e., speech, sign language, and lip reading - anything that would enhance her understanding of the world around her. Lauren went to preschool when she was 2-1/2 years old - Harley Hopkins, where there were deaf kids and teachers of the deaf/HH. Here's a link: http://www.hopkinsschools.org/schools/harley-hopkins-family-center/ecse-early-childhood-special-education
Lauren was mainstreamed from Kindergarten through high school, utilizing an interpreter as needed. One of the reasons her Dad and I decided on that was because we thought it was important to have her go to school with other kids in the neighborhood.
When Lauren was 9 years old, I was working at the time for the administrator of the University of Minnesota Physicians. He was aware that I had a deaf child and asked me if I ever considered a cochlear implant for Lauren because the U of M was one of two places that did the surgery (the other one being the Mayo Clinic in Rochester, MN). After discussions between her Dad and I, we decided to go ahead with the surgery on her right side only, and she would continue the hearing aid in her left ear. At first, she absolutely hated the CI and wanted her hearing aid back. It took numerous trips to the audiologist for adjustments, and lots of time for her to get used to it, but eventually she adapted to it and liked it. One of the main differences is that she could talk on the telephone after the cochlear implant and actually hear me. The cochlear implant, combined with her excellent lip reading skills, made a world of difference.
When Lauren was 17 years old, the option of having a cochlear implant in her left ear was given to her. I felt that she was old enough to decide for herself, and she decided to go ahead with the surgery.
To this day, we don't know the cause of Lauren's hearing loss, whether it was a genetic issue or not. In the future, should she decide to have children, she can get genetic testing if she chooses to find that out.
After returning to the United States, I brought her to the University of Minnesota to be examined by a group of doctors that specialized in giving a thorough examination of adopted babies from foreign countries. I mentioned my concerns about her hearing and although they didn't give her any hearing tests, they recommended I take her to an Ear, Nose & Throat doctor and have an audiologist test her. In the meantime, I was trying to pay attention to Lauren's reactions on a day-to-day basis. I was convinced that something with her hearing wasn't right when she wouldn't react when I was vacuuming in her room while she was awake in her crib. She would only react when she saw me. It was obvious to me that she didn't hear the vacuum.
Lauren was a very loud baby, letting out a lot of shrill screams, when she was happy and when she was not so happy. I think that it was her way of expressing herself without words.
On the direction of the U of M Physicans, I took her to an ENT and had her tested when she was 12 months old. The test is performed on babies while they are sleeping so I had to take her in when she was due for a nap. They hooked up numerous electrodes on her head and were able to get a fairly accurate test on her level of hearing. She was diagnosed in the profound category in her right ear and the severe category in her left ear. I remember walking out of the doctor's office with Lauren, putting her in her car seat in the backseat, getting into the driver's seat and tears were rolling down my cheeks. I felt so bad for her, but then I looked in the backseat and she was happy as a clam playing with her toy, and I immediately changed from being sad to getting the attitude that I was going to do everything possible for this child that I could do.
Lauren was fitted with hearing aids shortly after that. We went through a period of her trying to get used to them. She did not like them at first, yanking them out of her ears dozens of times a day. Finally, she got to the point of leaving them in.
Minnesota is an excellent state for providing services for deaf/HH children. We got the school system involved immediately, having home visits from a teacher of the deaf/HH a couple of times a week. Her Dad and I decided that we would use any and all means possible for communication with her - i.e., speech, sign language, and lip reading - anything that would enhance her understanding of the world around her. Lauren went to preschool when she was 2-1/2 years old - Harley Hopkins, where there were deaf kids and teachers of the deaf/HH. Here's a link: http://www.hopkinsschools.org/schools/harley-hopkins-family-center/ecse-early-childhood-special-education
Lauren was mainstreamed from Kindergarten through high school, utilizing an interpreter as needed. One of the reasons her Dad and I decided on that was because we thought it was important to have her go to school with other kids in the neighborhood.
When Lauren was 9 years old, I was working at the time for the administrator of the University of Minnesota Physicians. He was aware that I had a deaf child and asked me if I ever considered a cochlear implant for Lauren because the U of M was one of two places that did the surgery (the other one being the Mayo Clinic in Rochester, MN). After discussions between her Dad and I, we decided to go ahead with the surgery on her right side only, and she would continue the hearing aid in her left ear. At first, she absolutely hated the CI and wanted her hearing aid back. It took numerous trips to the audiologist for adjustments, and lots of time for her to get used to it, but eventually she adapted to it and liked it. One of the main differences is that she could talk on the telephone after the cochlear implant and actually hear me. The cochlear implant, combined with her excellent lip reading skills, made a world of difference.
When Lauren was 17 years old, the option of having a cochlear implant in her left ear was given to her. I felt that she was old enough to decide for herself, and she decided to go ahead with the surgery.
To this day, we don't know the cause of Lauren's hearing loss, whether it was a genetic issue or not. In the future, should she decide to have children, she can get genetic testing if she chooses to find that out.
Family #4: Basketball Star
When my daughter was 2 years old she became ill with bacterial meningococcal meningitis. She was hospitalized for 10 days on high doses of medicine. Soon after we left the hospital we did a brain scan that showed that her hearing had been damaged in both ears.
We tried hearing aids, however they didn’t give enough sound. We had her tested at age 3 for a cochlear implant, however we couldn’t make the decision as parents to put her through that, we decided to let that be her decision later in life.
She started school at age 3, traveling from Floyd County to Roanoke in a state car. She was enrolled in a Regional program through the Roanoke City School system, Virginia Heights Elementary, then to Woodrow Wilson Middle School. She learned sign language and progressed so amazingly. She went to school in Roanoke through 7th grade. She started playing basketball at age 9 with girls in Floyd and wanted to play basketball with those girls in High School, therefore we transferred her to Floyd for High School.
At age 12, she asked us if she could get a cochlear implant, so we took her to UVA and had her tested. She received her implant and what a change it has made in her. She now hears everything. We can be downstairs and yell her name and she can hear us. I can whisper her name and she can hear me. She even told me she heard my hairspray. When she first received her implant and she would hear something, she would ask me “what is that”, and I would say “what does it sound like”, she would then imitate the sound, and then I would tell her what it was. I felt that it was a way to grow her vocabulary and helping you learn sounds. But when she told me she heard my hairspray I was amazed, that was something I never paid any attention to.
Her speech isn’t where I would like for it to be, but it is improving. We just need to continue to work on it. She is currently going to speech therapy that's provided at her college.
Having a deaf child has been a very emotional at times. When she became sick, we thought we were going to lose her and it was a big shock to learn that she was deaf. However, there was never a time that we considered sending her to a regional school. Our focus was what we could do for her and our goal was to learn to communicate with her and make her feel a part of the family and to feel that she fit in with us. I have always been there for her, to sign for her at basketball games and practices, and also at church.
We tried hearing aids, however they didn’t give enough sound. We had her tested at age 3 for a cochlear implant, however we couldn’t make the decision as parents to put her through that, we decided to let that be her decision later in life.
She started school at age 3, traveling from Floyd County to Roanoke in a state car. She was enrolled in a Regional program through the Roanoke City School system, Virginia Heights Elementary, then to Woodrow Wilson Middle School. She learned sign language and progressed so amazingly. She went to school in Roanoke through 7th grade. She started playing basketball at age 9 with girls in Floyd and wanted to play basketball with those girls in High School, therefore we transferred her to Floyd for High School.
At age 12, she asked us if she could get a cochlear implant, so we took her to UVA and had her tested. She received her implant and what a change it has made in her. She now hears everything. We can be downstairs and yell her name and she can hear us. I can whisper her name and she can hear me. She even told me she heard my hairspray. When she first received her implant and she would hear something, she would ask me “what is that”, and I would say “what does it sound like”, she would then imitate the sound, and then I would tell her what it was. I felt that it was a way to grow her vocabulary and helping you learn sounds. But when she told me she heard my hairspray I was amazed, that was something I never paid any attention to.
Her speech isn’t where I would like for it to be, but it is improving. We just need to continue to work on it. She is currently going to speech therapy that's provided at her college.
Having a deaf child has been a very emotional at times. When she became sick, we thought we were going to lose her and it was a big shock to learn that she was deaf. However, there was never a time that we considered sending her to a regional school. Our focus was what we could do for her and our goal was to learn to communicate with her and make her feel a part of the family and to feel that she fit in with us. I have always been there for her, to sign for her at basketball games and practices, and also at church.
Family #5: Advice from Mom
In raising two deaf sons I have dealt with lots of different issues. Learning to communicate is the most important thing and should be a priority. Children with hearing loss are loud!! Very loud and it is very normal. They are kids and just want to be like everyone else.
Each child develops speech at different stages and at different levels. A good IEP is essential once a child is in school. Make sure all modifications are clearly stated in an IEP. For example all tests in plain English to make questions less wordy, unlimited test taking time, lots of visual aids, closed caption and an interpreter follows them to each class everyday if they are mainstreamed. These modifications can also follow these students to college life. Make sure they have a good support system. Most of all make them feel like they can do anything anyone else can do.
Each child develops speech at different stages and at different levels. A good IEP is essential once a child is in school. Make sure all modifications are clearly stated in an IEP. For example all tests in plain English to make questions less wordy, unlimited test taking time, lots of visual aids, closed caption and an interpreter follows them to each class everyday if they are mainstreamed. These modifications can also follow these students to college life. Make sure they have a good support system. Most of all make them feel like they can do anything anyone else can do.
Family #6: GOD made her the way she is
Taylor was my smallest child born in December, 1984. She weight 6 lbs 7 ozs the other were all 8lbs and over. She definitely was small and petite compared to our other children. We noticed that her head would lean and she couldn’t seem to hold it straight. We were sent to a pediatric specialist in Roanoke. They were not sure so they sent us to a neurologist because they thought she might have cerebal palsy. So two weeks later we were back in Roanoke to see the neurologist and he said she was delayed and would gain the strength in her neck, as she got older. And she did.
When Taylor was two she had a very high fever and was hospitalized and seemed to come out of it fine. At one of her check ups her pediatrician thought we should have a cystic hygroma that was on her chest looked at by a physician at University of Virginia. So we took another trip to Charlottesville this time and they thought it should be removed. You see Taylor was a very active child and if you, or she fell hard onto her chest she could bleed into that area and make it worse. So we scheduled the surgery and had it removed. I believe two weeks later, the area in her chest had filled with fluid again and they had to go back in and seal the area so that it would adhere to the tissue around it. This worked.
When Taylor turned four we noticed she would sit close to the television and turn her head towards the TV to listen with her left ear. I took her in to see her pediatrician who then sent us to see an Ear, Nose, and Throat specialist. He said the one ear was almost all gone but the other ear was fine and most likely it would stay fine. Well it wasn’t fine so I asked that we see a specialist in Roanoke because I thought something was going on with the left ear. We went to Roanoke and they immediately got us to UVA. They schedule what we call window surgery within the week to see if this would save what hearing she had left. Yes the left ear seemed to be going too.
The idea of the window surgery was to take tissue from her ear lobe and patch the windows in her ears to keep from having further hearing lose. They weren’t sure if the window was leaking or not but they did this as a precaution. It worked and she has maintained the same hearing since she was four. However the doctors believe it was a virus and reassured us we did nothing wrong. She has a profound hearing loss. She is almost completely deaf in the right ear. She says it sounds different so she relies on her left ear for information. She was fitted with hearing aides within two weeks of her surgery and has replaced them every five years. Most insurance companies covered back then the first $250.00 and most hearing aides at the time ran between $500 and $750.
We asked for educational advice and they said no sign or she would stop talking and to get her into speech therapy several times a week. We did and we started her in public school early with the understanding she would repeat kindergarten since she was only four at the time and they didn’t offer a preschool and I didn’t want her in the inclusion deaf class. She was one of the first special needs students to attend her elementary school in the regular classroom. She wasn’t part of the deaf world and still had trouble with the hearing world.
She tried so hard and struggled all the way through school. I guess we should have gotten more advice then just her doctor. Hines sight she should have had both sign and oral instructions. If I can advise any parent of an hearing impaired child it would be to make sure they have speech & language, sign language and regular classroom education. The combination could have helped Taylor so much more. She had some speech and language. Because her speech was so good they discontinued it when they should have discontinued speech but continued language. She did pick it back up in high school but she really needed it all the way through. There were so many things she missed simple things you and I pick up in the hearing world that she just missed along the way. For example a steering wheel, a window seal, these are things she had no idea what they were. So make sure your child has speech and language. Even though her speech was perfect the language is what she needed all the way through school to make sure she didn’t miss those words. The sign was to help her get what she missed her teacher saying. The three together would have helped her grow.
Besides Taylor’s struggles with school she had struggles with peers. I think because she was always behind on conversations and she had a processing disorder on top of the hearing impairment. When she did join in with the conversation it was over and they had moved on to another subject. She always seemed lost and not accepted.
You see Taylor looks at the world through rose-colored glasses. She always thought everyone was great but herself. And she is the one who is great. She never judged you. She just loved with all her heart and she still does. I always told her GOD made her like this for a reason and in her adult life I can see that reason in the eyes of her daughter. She is the greatest mother I have ever known and the way she is with children is amazing. She loves children and especially those with special needs. Nothing fazes her she stays as calm as can be no matter what situation she is in because she knows those children need her. She truly loves them all. What an amazing person GOD has put in this world and I have the privilege to call my daughter.
When Taylor was two she had a very high fever and was hospitalized and seemed to come out of it fine. At one of her check ups her pediatrician thought we should have a cystic hygroma that was on her chest looked at by a physician at University of Virginia. So we took another trip to Charlottesville this time and they thought it should be removed. You see Taylor was a very active child and if you, or she fell hard onto her chest she could bleed into that area and make it worse. So we scheduled the surgery and had it removed. I believe two weeks later, the area in her chest had filled with fluid again and they had to go back in and seal the area so that it would adhere to the tissue around it. This worked.
When Taylor turned four we noticed she would sit close to the television and turn her head towards the TV to listen with her left ear. I took her in to see her pediatrician who then sent us to see an Ear, Nose, and Throat specialist. He said the one ear was almost all gone but the other ear was fine and most likely it would stay fine. Well it wasn’t fine so I asked that we see a specialist in Roanoke because I thought something was going on with the left ear. We went to Roanoke and they immediately got us to UVA. They schedule what we call window surgery within the week to see if this would save what hearing she had left. Yes the left ear seemed to be going too.
The idea of the window surgery was to take tissue from her ear lobe and patch the windows in her ears to keep from having further hearing lose. They weren’t sure if the window was leaking or not but they did this as a precaution. It worked and she has maintained the same hearing since she was four. However the doctors believe it was a virus and reassured us we did nothing wrong. She has a profound hearing loss. She is almost completely deaf in the right ear. She says it sounds different so she relies on her left ear for information. She was fitted with hearing aides within two weeks of her surgery and has replaced them every five years. Most insurance companies covered back then the first $250.00 and most hearing aides at the time ran between $500 and $750.
We asked for educational advice and they said no sign or she would stop talking and to get her into speech therapy several times a week. We did and we started her in public school early with the understanding she would repeat kindergarten since she was only four at the time and they didn’t offer a preschool and I didn’t want her in the inclusion deaf class. She was one of the first special needs students to attend her elementary school in the regular classroom. She wasn’t part of the deaf world and still had trouble with the hearing world.
She tried so hard and struggled all the way through school. I guess we should have gotten more advice then just her doctor. Hines sight she should have had both sign and oral instructions. If I can advise any parent of an hearing impaired child it would be to make sure they have speech & language, sign language and regular classroom education. The combination could have helped Taylor so much more. She had some speech and language. Because her speech was so good they discontinued it when they should have discontinued speech but continued language. She did pick it back up in high school but she really needed it all the way through. There were so many things she missed simple things you and I pick up in the hearing world that she just missed along the way. For example a steering wheel, a window seal, these are things she had no idea what they were. So make sure your child has speech and language. Even though her speech was perfect the language is what she needed all the way through school to make sure she didn’t miss those words. The sign was to help her get what she missed her teacher saying. The three together would have helped her grow.
Besides Taylor’s struggles with school she had struggles with peers. I think because she was always behind on conversations and she had a processing disorder on top of the hearing impairment. When she did join in with the conversation it was over and they had moved on to another subject. She always seemed lost and not accepted.
You see Taylor looks at the world through rose-colored glasses. She always thought everyone was great but herself. And she is the one who is great. She never judged you. She just loved with all her heart and she still does. I always told her GOD made her like this for a reason and in her adult life I can see that reason in the eyes of her daughter. She is the greatest mother I have ever known and the way she is with children is amazing. She loves children and especially those with special needs. Nothing fazes her she stays as calm as can be no matter what situation she is in because she knows those children need her. She truly loves them all. What an amazing person GOD has put in this world and I have the privilege to call my daughter.
Family #7: Rambunctuous Lauren
Before my daughter Lauren was diagnosed with deafness her behavior was inappropriate and frustrating to say the least. I will give some examples. While I worked out at the gym, she attended the child care facility. While there she would have to wear a sticker that read "escapee" because at age 2 she could open any lock made in the world and would then run full speed out of the room and sometimes right into the men's locker room. She would climb up the highest objects in any room just to walk, hop, jump, and run across it. Anything not nailed down was pulled down and completely examined inside and out. If it was a cup of anything, she would pour it out. It didn't matter if it was at home or at a friend’s house. It didn't matter if it was inside on the carpet or outside in the dirt. While I had a friend over, she once covered her whole body in peanut butter like mommy lathers herself in lotion. She also decided to lather the back deck and patio furnishings with the peanut butter too. Another time we were out shopping and Lauren was strapped her down in her stroller so I didn't have to chase after her. She was all quiet and I was so happy! Things seemed to be going really well until I looked down at her and OMG!! Yellow paint was everywhere! She had grabbed some yellow craft paint without me seeing her, opened it and poured all over the place!
I noticed that when Lauren was playing she would do a lot of screaming. Not in being mad or frustrated, this was just a part of play for her. During playtime she would watch others play, then play next to them, and then go off and play by herself. She would try to talk to others, but kids/adults did not understand what it was she was trying to say. I believe this was about age 2 ½. She didn’t use many words to communicate and was very physical when playing with playmates including her sister. She did not listen to me and follow rules. Needless to say, most people did not invite us over for play dates. I repeatedly had asked the doctor if she thought Lauren could have a hearing loss or something wrong with her since she wasn’t talking, but she said I was a worry-wart and was just developing at a different rate than her older sister.
Lauren was diagnosed at age 3 with severe hearing loss, and was aided with hearing aids within 1 or 2 weeks. She wore hearing aids for almost 1 year before getting her first cochlear implant. We had found out she had progressive deafness and her hearing had become much worse quickly in that first year after she was initially diagnosed, so bad that she qualified to be a candidate for a cochlear implant. We did not waste any time and had her implanted at age 4. Lauren had her second implant at age 5. She had to get re-implant at age 6 because of an internal devise failure on the first implant.
(Age 8 now)
Now that Lauren has her cochlear implants...............just typing that brings tears of joy. She is a very lucky little girl to live in a day that has this to offer. She is in gymnastics class and is one of the best in her class! She loves to do cheers. So, I have a feeling cheerleading is next for her! She takes swimming lessons—getting ready to be on the swim team! She has play-dates and sleepovers all the time! People (parents and teachers) tell me what a delight she is to have in their homes and classes! She is involved in scouting and sells her Girl Scout cookies all by herself. I take her to the doctor office and we can go in the exam room and she discusses issues with the doctor without moms help! She orders her food at restaurants by herself. She holds conversations with the cashier at the grocery store.
Lauren has many friends. If someone says her name, kids are say, "Oh, I know Lauren she is my friend!" She really does have a lot of wonderful friends. Every parent has the fear of other kids making fun of their child. There has not been one child that we know of that has made fun of Lauren. Most children (and adults) are really interested in what the cochlear implants are and how they work. It is just awesome to watch Lauren interact with the other children.
I am so overwhelming happy for my daughter. Words really can't explain my emotions and feelings. It is just simply amazing who she has become and the possibilities of who she will continue to become.
I noticed that when Lauren was playing she would do a lot of screaming. Not in being mad or frustrated, this was just a part of play for her. During playtime she would watch others play, then play next to them, and then go off and play by herself. She would try to talk to others, but kids/adults did not understand what it was she was trying to say. I believe this was about age 2 ½. She didn’t use many words to communicate and was very physical when playing with playmates including her sister. She did not listen to me and follow rules. Needless to say, most people did not invite us over for play dates. I repeatedly had asked the doctor if she thought Lauren could have a hearing loss or something wrong with her since she wasn’t talking, but she said I was a worry-wart and was just developing at a different rate than her older sister.
Lauren was diagnosed at age 3 with severe hearing loss, and was aided with hearing aids within 1 or 2 weeks. She wore hearing aids for almost 1 year before getting her first cochlear implant. We had found out she had progressive deafness and her hearing had become much worse quickly in that first year after she was initially diagnosed, so bad that she qualified to be a candidate for a cochlear implant. We did not waste any time and had her implanted at age 4. Lauren had her second implant at age 5. She had to get re-implant at age 6 because of an internal devise failure on the first implant.
(Age 8 now)
Now that Lauren has her cochlear implants...............just typing that brings tears of joy. She is a very lucky little girl to live in a day that has this to offer. She is in gymnastics class and is one of the best in her class! She loves to do cheers. So, I have a feeling cheerleading is next for her! She takes swimming lessons—getting ready to be on the swim team! She has play-dates and sleepovers all the time! People (parents and teachers) tell me what a delight she is to have in their homes and classes! She is involved in scouting and sells her Girl Scout cookies all by herself. I take her to the doctor office and we can go in the exam room and she discusses issues with the doctor without moms help! She orders her food at restaurants by herself. She holds conversations with the cashier at the grocery store.
Lauren has many friends. If someone says her name, kids are say, "Oh, I know Lauren she is my friend!" She really does have a lot of wonderful friends. Every parent has the fear of other kids making fun of their child. There has not been one child that we know of that has made fun of Lauren. Most children (and adults) are really interested in what the cochlear implants are and how they work. It is just awesome to watch Lauren interact with the other children.
I am so overwhelming happy for my daughter. Words really can't explain my emotions and feelings. It is just simply amazing who she has become and the possibilities of who she will continue to become.
Family #8: The Girl everyone thought was completely Deaf
Lindsay was my first baby, so I didn't have anyone else to compare her to. Looking back, the signs of her hearing loss were there and her dad and I didn't pick up on it as soon as we should have. Actually Lindsay’s grandpa was the first one to sense that her hearing wasn't great but we didn't take his concerns too seriously.
Lindsay's pediatrician was a new, young doctor and when I finally brought up that she wasn't saying any "words" he wasn't concerned either. It wasn't until her next visit when nothing had changed that the ball got rolling.
We were first directed to a social service agency in Racine, WI where we were living and a social worker came to our home and did the "interview". I don't remember exactly what came out of that but I do know that I took it upon myself to call Children's Hospital of Wisconsin to get an appointment. Our visit to Children's was in the audiology department and it became apparent then that Lindsay wasn't hearing very well. She was about 22 months old. Next we had to have a regular doctor's prescription to have her hearing aids. That always annoyed me because our young pediatrician didn't have a clue about hearing loss, yet he had to write a prescription for Lindsay to get them. Lindsay got her hearing aids at 23 months old. Her hearing loss was diagnosed as MOD/SEV in the left ear and SEV/PROFOUND in the right.
Next we were directed to The Milwaukee Hearing Society. They had a birth to 3 year old program for deaf and hard of hearing children. (I never did do anything with the Racine social service agency- any regrets). The MHS was a great place for Lindsay. We drove up there twice a week for 90 minutes and there were lots of other D/HH toddlers. The teachers were wonderful and the parents gathered together and talked and shared stories. We had home visits for a period of time, also which was nice. Everyone was so professional and experienced and it was comforting to be a part of that. Lindsay started picking up signs right away and her dad and I joined a beginner sign class. We also went to some of the meetings they had for the new parents where we could hear from the experienced parents what their stories were. The MHS also set up a visit at the school in our hometown where Lindsay would start attending when she turned 3 yrs. old. We really liked the teacher for the D/HH and got to see the other kids in the classroom and what part of the day looked like. Lindsay spent just over 12 months at the MHS and then started in a D/HH 3 year program at Mitchell Elementary school for the next 2 yrs. We could have chosen any communication method and the school would have had to abide by those requests. She was taking in sign language so well and we knew her hearing was enough that she could pick up our voices too, so we decided on sign language with verbalization for her. The IEP was set.
The summer before Lindsay started kindergarten, we moved to Pleasant Prairie, into the school boundary where the D/HH program was for K-6. Another girl was already in the 3+ program got 'bumped" up a year in advance so Lindsay and her could be together. In 3rd grade another deaf girl in the same grade level moved into the district and the 3 of them continued their education and friendship all the way thru high school. (For a 3-4year period a 4th deaf girl was part of their group, too. Each with a different kind of hearing loss and background to explain it.) For all of the elementary and middle school years Lindsay was receiving speech therapy. As every year went by it was very obvious that she was going to be proficient in sign language AND speak well enough to be understood. IT was getting Lindsay to use her voice that became an issue sometimes. Her closest friends were "deaf" and she was always communicating with them in sign language, so many kids never knew how well she could hear, didn't know they could talk to her face to face and assumed she was "deaf, too. Lindsay had also made the choice to stop wearing her aid in the worse ear. She started yanking her right hearing aid out in grade school and trying to do what we thought was best, her dad and I would try to get her to wear both. When-ever she got new hearing aids we always got a left and a right. But, after years of this, we came to know that Lindsay knew what was best for her and started wearing only one hearing aid. Also, by HS Lindsay decided she didn't want speech therapy anymore either. She did speak very well and there comes a point where you just can't fight every battle and so no more speech therapy it was.
Lindsay (and our family) was very fortunate to live in such an urban area where there were services and programs for D/HH children already in place. We were so fortunate to have other kids in school with Lindsay the entire time K-12. She had accomplished trained interpreters. She had teachers who had degrees in deaf education. She had a school district that gave her all the things she needed when she wanted to do extracurricular activities. And having the other families to lean on and share our lives with was absolutely wonderful.
It wasn't always easy, there were times when we "moms" let our concerns be known. We were definitely known to NOT sit back and do nothing when a problem arose. One of the little things was not having captioned films but to us parents that was a big thing and we let it be known. The power of 3 was pretty great.
Lindsay's HS also had a sign language club run by 2 interpreters who made it their mission so have the world know about sign language. The sign language club did A LOT of actives and showed the path to quite a few kids into deaf education and interpreting.
Lindsay's pediatrician was a new, young doctor and when I finally brought up that she wasn't saying any "words" he wasn't concerned either. It wasn't until her next visit when nothing had changed that the ball got rolling.
We were first directed to a social service agency in Racine, WI where we were living and a social worker came to our home and did the "interview". I don't remember exactly what came out of that but I do know that I took it upon myself to call Children's Hospital of Wisconsin to get an appointment. Our visit to Children's was in the audiology department and it became apparent then that Lindsay wasn't hearing very well. She was about 22 months old. Next we had to have a regular doctor's prescription to have her hearing aids. That always annoyed me because our young pediatrician didn't have a clue about hearing loss, yet he had to write a prescription for Lindsay to get them. Lindsay got her hearing aids at 23 months old. Her hearing loss was diagnosed as MOD/SEV in the left ear and SEV/PROFOUND in the right.
Next we were directed to The Milwaukee Hearing Society. They had a birth to 3 year old program for deaf and hard of hearing children. (I never did do anything with the Racine social service agency- any regrets). The MHS was a great place for Lindsay. We drove up there twice a week for 90 minutes and there were lots of other D/HH toddlers. The teachers were wonderful and the parents gathered together and talked and shared stories. We had home visits for a period of time, also which was nice. Everyone was so professional and experienced and it was comforting to be a part of that. Lindsay started picking up signs right away and her dad and I joined a beginner sign class. We also went to some of the meetings they had for the new parents where we could hear from the experienced parents what their stories were. The MHS also set up a visit at the school in our hometown where Lindsay would start attending when she turned 3 yrs. old. We really liked the teacher for the D/HH and got to see the other kids in the classroom and what part of the day looked like. Lindsay spent just over 12 months at the MHS and then started in a D/HH 3 year program at Mitchell Elementary school for the next 2 yrs. We could have chosen any communication method and the school would have had to abide by those requests. She was taking in sign language so well and we knew her hearing was enough that she could pick up our voices too, so we decided on sign language with verbalization for her. The IEP was set.
The summer before Lindsay started kindergarten, we moved to Pleasant Prairie, into the school boundary where the D/HH program was for K-6. Another girl was already in the 3+ program got 'bumped" up a year in advance so Lindsay and her could be together. In 3rd grade another deaf girl in the same grade level moved into the district and the 3 of them continued their education and friendship all the way thru high school. (For a 3-4year period a 4th deaf girl was part of their group, too. Each with a different kind of hearing loss and background to explain it.) For all of the elementary and middle school years Lindsay was receiving speech therapy. As every year went by it was very obvious that she was going to be proficient in sign language AND speak well enough to be understood. IT was getting Lindsay to use her voice that became an issue sometimes. Her closest friends were "deaf" and she was always communicating with them in sign language, so many kids never knew how well she could hear, didn't know they could talk to her face to face and assumed she was "deaf, too. Lindsay had also made the choice to stop wearing her aid in the worse ear. She started yanking her right hearing aid out in grade school and trying to do what we thought was best, her dad and I would try to get her to wear both. When-ever she got new hearing aids we always got a left and a right. But, after years of this, we came to know that Lindsay knew what was best for her and started wearing only one hearing aid. Also, by HS Lindsay decided she didn't want speech therapy anymore either. She did speak very well and there comes a point where you just can't fight every battle and so no more speech therapy it was.
Lindsay (and our family) was very fortunate to live in such an urban area where there were services and programs for D/HH children already in place. We were so fortunate to have other kids in school with Lindsay the entire time K-12. She had accomplished trained interpreters. She had teachers who had degrees in deaf education. She had a school district that gave her all the things she needed when she wanted to do extracurricular activities. And having the other families to lean on and share our lives with was absolutely wonderful.
It wasn't always easy, there were times when we "moms" let our concerns be known. We were definitely known to NOT sit back and do nothing when a problem arose. One of the little things was not having captioned films but to us parents that was a big thing and we let it be known. The power of 3 was pretty great.
Lindsay's HS also had a sign language club run by 2 interpreters who made it their mission so have the world know about sign language. The sign language club did A LOT of actives and showed the path to quite a few kids into deaf education and interpreting.
Family #9: Brookie the Social Butterfly
My daughter Brooke is currently 5 years old, full of life and energy, and quite the social butterfly. At 3 years old, after many uncertain attempts to establish a diagnosis of her condition, she was finally diagnosed with a severe hearing loss. Up until this point, it was an up-hill battle with meeting her needs and understanding her wants. She could not speak, nor did she know sign language. Too many times simple requests from her, turned into a chaotic situation resulting in anything from tears and tantrums, to throwing and breaking dishes, to an extreme case of trying to turn the kitchen table over. This became very frustrating and depressing for her father and I. But nothing could compare to a child at 3 years of age with such a strong presence and personality just beginning to live, but dying to be heard and unable to communicate with those people closest to her, her family. As her mother, I constantly sheltered her from normal toddler activities, afraid of what other people might think or say to me or her. Or even what she may strike out and do to another child that doesn't quite respond the way she needs them to. In the past, I have felt guilty for not involving her in particular activities, causing her to miss out on developmental milestones usually embraced by parents of young children.
But with the blessings of God and the Montgomery County School System, Brooke has completely taken a different stance within just the last year and a half. Beginning in June 2009, she began staying with a young lady on a daily basis that has walked in the same shoes as Brooke did when she was younger. The young lady has a severe hearing loss actually worse than Brooke's and has mastered sign language and the ability to interact with children that have the same or similar disabilities. Then in August 2009, Brooke began preschool at Head Start in Christiansburg with the daily aide of a speech pathologist. Within just a few short weeks, Brooke's disposition changed and her world started opening up even more with the addition of learning consistent sign language. What a valuable avenue American Sign Language has become in all of our lives!! Then in March 2010, Brooke received her very own hearing aids, calibrated for her level of hearing loss. The combination of ASL and her hearing aids has changed my daughters' outlook on life in every way possible and given us a second chance at communication with her. I feel VERY confident that nothing will hold my daughter back given her tenacity this early in life. Brooke did not let her hearing loss define her; it simply became an extension of the strong personality she already possessed! As well as it has become an extension of myself as well. In May 2010, I completed my first semester of basic ASL studies with NRCC in order to further my understanding of the world deaf people live in and what they were surround by. As well as the beauty of diversity in communication!
But with the blessings of God and the Montgomery County School System, Brooke has completely taken a different stance within just the last year and a half. Beginning in June 2009, she began staying with a young lady on a daily basis that has walked in the same shoes as Brooke did when she was younger. The young lady has a severe hearing loss actually worse than Brooke's and has mastered sign language and the ability to interact with children that have the same or similar disabilities. Then in August 2009, Brooke began preschool at Head Start in Christiansburg with the daily aide of a speech pathologist. Within just a few short weeks, Brooke's disposition changed and her world started opening up even more with the addition of learning consistent sign language. What a valuable avenue American Sign Language has become in all of our lives!! Then in March 2010, Brooke received her very own hearing aids, calibrated for her level of hearing loss. The combination of ASL and her hearing aids has changed my daughters' outlook on life in every way possible and given us a second chance at communication with her. I feel VERY confident that nothing will hold my daughter back given her tenacity this early in life. Brooke did not let her hearing loss define her; it simply became an extension of the strong personality she already possessed! As well as it has become an extension of myself as well. In May 2010, I completed my first semester of basic ASL studies with NRCC in order to further my understanding of the world deaf people live in and what they were surround by. As well as the beauty of diversity in communication!