Meeting Other Families

Parents Talk About Finding Out Their Child Is Deaf or Hard of Hearing*​

*The family quotes below were originally contributed to a team that developed a website for families focused on "raising deaf kids" (See About Us ). Minor edits may have been made.

Read this page to hear what other parents say about finding out their child is deaf or hard of hearing.

– David's Mother

"I was in a daze. I went in there and they sat me down here. And then she said, 'now you have to go back over there to Pre-register first.' And I'm carrying the baby. She's exhausted. I'm exhausted. I'm carrying her down to register and carrying her back. Okay. I'm a wreck at this point. She brings me into this room. She sits me down. Puts the baby on me and she turns, she turns Danielle's head and starts pouring pink goo into her ears (i.e., earmold impressions). Now this is day two, okay. She is pouring the pink goop in, and she is telling me you need to contact early intervention…What are you doing? Who are you?' You know what I mean? She didn't offer me a tissue. There were people walking in and out of the room and I'm crying. And the baby is just exhausted, and it is like four o'clock and I had to make arrangements for [my 3-year-old] because I didn't expect to be gone that long. So, we get through the pink goop, and I still didn't know what she was doing. And the baby fell asleep on me, and I had to lay her down on the floor in there to call to make more arrangements."

– Danielle's Mother  

For more information from parents, visit https://www.babyhearing.org/parenting/coping-with-the-diagnosis

Parents Talk about Communication Choices*

*The quotes below were originally contributed to a team that developed a website for families focused on "raising deaf kids" (See About Us). Minor edits may have been made.

We didn't want him to "stand out."

"We were devastated by the news that our son was profoundly deaf. We knew nothing about deafness. We swore he would never sign or 'stand out' in public." 

But we wanted to help him learn language easily.

"We calmed down, started to read and talk to people, deaf and hearing. We decided to compromise and chose to use total communication (spoken language and signing), based on the belief it would help his English skills and we respected the fact that our hands could learn to sign better and faster than his ears could learn to hear… As soon as he learned a sign, he attempted to speak the word as well. Soon he has almost as many spoken words as signs." 

– Peter's Mom

We wanted him to speak our language.

"We chose Auditory-Verbal (now often called Listening and Spoken Language) because we wanted our child to speak the language of his family and culture. We wanted him to have the same educational opportunities and abilities of our other children, and we wanted him to be self-sufficient. He is not yet 3 and is already on par with his peers receptively and expressively. He is only 'deaf' when he is asleep or in the bathtub! With his cochlear implant on, he is like a hearing child." 

– Amy 

Choosing how to communicate was hard

Choosing whether to speak or sign was really hard.

"I've seen what children can do orally. The thing is, if your child can do it, they can do it. But a lot of children just can't because they really just don't have enough linguistic ability and whatever other mechanical stuff you need to make it work. 

If you try it, and it works, heck, it really works. But you don't know. So, we were just so afraid in the beginning of it not working that we didn't want to waste that time having it not work… It's a very difficult decision." 

– Devon's Mom 

How they decided how to communicate

"Peter likes to hear words too. When I signed voice off, my son would ask, 'Voice Mommy, please. I want to hear the words, too!'… He loves sound! He blasts his stereo, the TV, the computer speakers, anything he can. Sometimes we tease him that he is attempting to deafen the rest of the family just to even the playing field!"

– Peter's Mom 

We looked into both speaking and signing before we decided.

"I felt that I could learn sign language. I thought my husband could learn sign language, too. But I felt that outsiders that we were friendly with wouldn't, and so it would limit her.

She was young, so we felt we had more time to choose.

We debated it. I did evaluate Total Communication programs. I met signing adults. I met speaking adults (who were deaf or hard of hearing). We decided to give speaking a shot at this point and see how it goes. She was quite young, so we thought we had a little bit of time if we made the wrong decision." 

– Valerie's Mom 

Using more than 1 way of communicating

Using sign language and talking, too.

Betsy knows sign language but mostly talks. She wears 2 behind-the-ear hearing aids that let her hear a little.

"We just use sign for times when she really can't hear, such as in a noisy indoor swimming pool, when her hearing aids are in for repairs and she can't hear well enough in a noisy restaurant, or when we need to communicate briefly in church without disturbing others."

– Betsy's Mom

I'm starting to open up to speaking and signing.

"He doesn't sign at home. I don't encourage it, and I know very few signs. But I'm seeing that being signed to as well as spoken to is helping him. And so that is opening my mind a little bit about total communication. But I haven't totally accepted total communication as a philosophy. I'm still strictly oral." 

– Vincent's Mom 

Betsy worries about losing even more hearing. But there are things she can do.

"Betsy used to worry about losing more hearing. Because she knows her vision loss is somewhat progressive and because she has lost a lot of other things in her life, she knows that loss happens. 

She used to ask about what if she lost her hearing. She felt better when I told her that more sign, cued speech, training in lip reading, stronger hearing aids, even cochlear implants if appropriate were all possibilities available to her. Most of all, it helped her that she already has a handle on one of these options, so she knew it was possible to deal with."

– Betsy's Mom 

Becky can say almost anything using total communication.

"There's very little that Becky can't express. She tells me when she's angry, she tells me when she's sad, she'll tell you if she's mad at her sister...and for that I'm so thankful." 

– Becky's Mom 

Sign language helps 

"I don't think it really matters which sign system you use as long as you start signing just as fast as you can. Which grammar you are using will hardly matter for the first few months, and there is no substitute for early two-way communication." 

– Lorna 

Sign language helped him learn new words.

Paul has a cochlear implant. The way he usually communicates is through talking and hearing. But Paul's mom uses sign language to teach Paul new words and new ideas.

"I believe that a big part of why his receptive language is so good is that what we did was introduce new vocabulary and new concepts first, with sign language, especially in the beginning of the implant. He would grasp it so fast, and then as soon as he had it in sign language, we would transfer it to a spoken language and that would take another few days to a week." 

– Paul's Mom 

For more information and guidance from parents, visit: More Advice from Parents - How do we Decide? - My Baby's Hearing

Parents Talk About Deafness and Additional Needs

*The quotes below were originally contributed to a team that developed a website for families focused on "raising deaf kids" (See About Us). Minor edits may have been made.

Learn what other parents say about their children having additional needs.

We've changed some names to protect the family's privacy. 

Auditory neuropathy

We're still trying to understand.

"He is now only 5 months old, so I am still learning and feeling confused more often than not." 

Auditory neuropathy was the least of our worries when he was born.

"Aidan was born just a few days early, and there were complications because I passed a stomach virus to him in utero. He had respiratory failure, hypertension, hyperbilirubinemia, along with a host of other problems. When the time was coming close to him going home, the hospital did the standard newborn hearing screen (the OAE), and it came back normal. But the NICU had its own rule that babies with elevated bilirubin levels would be given an ABR, which, in Aidan's case, came back abnormal.
(see Hearing Tests Used During Newborn Screening) 

"We had several other ABRs done, with the eventual diagnosis of auditory neuropathy (AN). Because he is so young, we must observe him for at least a year to determine whether his AN will persist, or whether it will go away on its own (which can occasionally happen)." 

He seems to be hearing more.

"Initially, Aidan didn't respond to very much sound -- maybe a creaky door or a musical toy. Lately, however, he is responding to our voices, to funny noises we make with our mouths, even to our attempts at calling him. So we are excited." 

No 2 kids with AN are alike.

"However, in the last five months, I've read enough to know that AN presents differently in every case. Even my ENT told me that two children can have the exact same ABR results but perform very differently. That is why some doctors will say to patients, 'Don't tell me what the tests say; tell me what your child is doing.'"

I just want to know what it's like for him.

"I have read that people with AN can hear in a number of ways. Some hear sound, but not clearly enough to distinguish speech. Some have moments of clarity and moments of dysynchrony. And I've even heard of someone whose child could hear relatively clearly for months at a time and then lose that clarity again. That is part of what is so frustrating to me as a new AN mom — there isn't any definitive answer to what my child is hearing." 

For more information:  https://www.babyhearing.org/auditory-neuropathy-spectrum-disorder

User Syndrome 

I knew something was wrong...

"When my daughter was 18 months old, I started bugging her pediatrician about her speech, and he kept telling me not to worry about it, that it would come. Finally, at age 3, I told him that I wanted her tested and that if he wouldn't set it up I would find a different doctor. He got me in touch with the local school's audiologist, and sure enough, she was hearing impaired." 

But I had no idea it could be Usher Syndrome.

"[Our pediatrician] started to ask me questions about family history. Does anyone else in my or my husband's family have hearing problems? I said yes, my mom and my uncle, but they're blind, too (I said, joking around). He asked me if they had retinitis pigmentosa (RP). That floored me because not many people know about RP, and I told him yes. He told me that hearing loss and RP have been connected to signal Usher syndrome within the last 10-15 years... 

"I knew about RP because of my mom having it, but she stopped getting tested and treated for it when I was really little because there is no cure. So we didn't know that the hearing had been connected with it..." 

We were shocked when we heard the news.

"We were devastated at first. But we're accepting it and doing what we can. My mom was really devastated and blamed herself."

For more information:  https://www.babyhearing.org/syndromic-genetic 

For more information on special needs: My Child has Additional Needs ​

Parents Talk about Hearing Aids and Cochlear Implants*​

*The stories below were originally contributed to a team that developed a website for families about "raising deaf kids" (See About Us). Minor edits may have been made.

Read this page to see what parents say about hearing aids and cochlear implants. 

Some of the names have been changed to protect the family's privacy:

Christofer de Hahn talks about the importance of using hearing aids with very young children:​ 

"If your child is focused on your face when talking, then she is speech reading. This is exactly what my oldest child did that taught us that he wanted to learn to talk. It is a sign that you should seriously consider. If your goal is for her to learn to listen and speak, then you must get her aided right away. It doesn't matter if the aids are a perfect fit audiologically, or the best technology at first, but if this is your goal she needs the input right away. I can't stress that enough. She is missing so much by not being able to hear. My oldest was diagnosed at 9 months and aided at one year of age. My second child was diagnosed at 4 days (because of family history, there was not newborn hearing screening then) and aided (properly) at three months. The difference in their ability to acquire auditory language was staggering. No comparison." 

Sarah's mom talks about when her daughter first got a hearing aid:

"She was a really crabby infant. She cried basically from 4 to 8 o'clock every night and she was crying when they went to put her hearing aids on. Then they turned them on and all of a sudden, her whole face lit up. Big smile, like stopped crying, became a different child. I wish we had videotaped that moment. It was like completely different." 

For more information on helping your little one adjust to hearing devices (hearing aids and cochlear implants), visit: https://www.babyhearing.org/devices/help-baby-adjust-hearing-aids 

Christofer deHahn talks about choosing a cochlear implant for his children:

“No matter what anybody tells you, this is always a very difficult decision. I have two deaf children, ages 6 and 11, both profoundly deaf, raised with sign - now oral - and ​ implanted. 

“The 6-year-old was doing very well with (hearing) aids until she had a shift in her hearing loss to 103 dB HL. She was struggling during speech therapy and wasn't getting all of the language in her integrated preschool setting. It was either digital aids or an implant. With a progressive loss, we decided on the implant. She is now 1.5 years post-implant, and we are currently evaluating her for the mainstream. Her private school for the deaf can no longer keep up with her. 

“My 11-year-old was implanted this past spring. He was a very successful digital hearing aid user; however, as the language became more complex, he had his difficulties. At first he ignored it, then he started to realize what he was missing. We left it up to him to decide whether he wanted an implant or not. It took him awhile, but he put together some great goals to shoot for post-implant. He has hit almost every one. 

“I'm not saying that you should let a 5-year-old decide for himself. You know what the goals are for your child. You know what they are capable of with their hearing aids. You have to decide whether to go with the best hearing aids or with an implant. It's a tough decision. 

“If I were to measure my children's progress post implant, it would be at least an order of magnitude better than how they progressed with their aids. Of course, there was no way to know that in advance. I see a lot of young kids with implants that show little or no difference. Some kids take time as well, showing slow but measurable gains over the years. There's just no way to predict."

Bonnie's mom talks about teaching a child with a cochlear implant:

"I think for Bonnie my main concern is the difficulty with which I think getting through the school system and doing well is going to require. Bonnie functions so well that you forget she's deaf. And that's a big detriment. You take for granted that she hears things, but she doesn't. I guess if anything I would say that I don't want to ever take for granted that Bonnie is hearing when she's not...You can't change the effects of deafness on language development. We think Bonnie hears things when in fact she's hearing something totally different. The fact is that this child has to translate continuously what she hears into what is the correct pronunciation. I mean it's like working in two different languages, twenty-four hours a day, seven days a week. It requires that she attends at a hundred per cent what we take for granted." 

Parents Talk about Mainstreaming

Educating their children in neighborhood schools*

*Stories in this section were originally contributed to a team that developed website for families focused on "raising deaf kids" (See About Us). Minor edits may have been made.

Read these stories to find out what other parents say about sending their children who are deaf or hard of hearing to mainstream schools. 

Some names have been changed for privacy. 

Following your child's lead 

He wants to stay in public school.

"Sometimes I think we should encourage him to attend (at least try) other
options now that he is hard of hearing enough to qualify [for deaf schools]. But we're letting him lead us. If the public school becomes too much, we may step in more forcefully. For now, we're doing it his way and making sure he has the services he needs in the public school." 

– Jill

We weren't afraid to try different things.

"For the first 5 years of our older deaf son's education, we flip-flopped him between the Cued Speech classroom and the Total Communication classroom. Then, as he progressed, we decided on a setting that would best help him achieve the next set of our goals for him." 

– Evelyn

She did well because she WANTED to be mainstreamed.

"The biggest factor, by far, for her success was her own determination to stay in [the mainstream] setting. That developed within the first 2 weeks."

– Lorna 

Is your child's school ready for him? 

His school needed to see him as his own person. 

"I think the most important criteria for a public-school placement is a willingness for all parties to look at the child involved - not just a 'laundry list' of skills."

"When we were stationed in Oklahoma, it took quite a fight to have our son mainstreamed with an interpreter. All because that school district's list of skills [required for mainstreaming] included the ability to function without an interpreter as a necessary skill to be placed in a regular classroom." 

–  Evelyn 

Sometimes it's more trouble than it's worth.

"From my experiences, and those of several parents from other districts, getting the "regular" schools to understand a hard-of-hearing kid's needs is a herculean task. They deal with many different disabilities and issues. A kid who is "only" hard of hearing can so easily slip right through every crack in the system." 

–  Jill 

Making friends 

We helped him "break the ice" with the other students.

"One of the first things we did when we decided to mainstream my oldest son was to talk to the students in the class about hearing loss and what to do to communicate with him. My son's interpreter grew up in the deaf community, so she talked to the kids about American Sign Language (ASL). The itinerant teacher came in and talked about hearing loss." 

"We asked our son ahead of time if he wanted to participate. He chose to take off his hearing aid and show it to the kids. I have to say, it was a real ice breaker. After that, the kids weren't  shy about tapping him on the shoulder or learning fingerspelling or some signs." 

– Karen

Making friends became harder as she got older.

"Elementary school was really easy in terms of acceptance. Our daughter had lots of friends and invitations to birthday parties despite the fact that she was the only deaf student in our neighborhood school." 

"In middle school that all began to change. We know that middle school is a difficult time for many students whether they are hearing, deaf, or someone with other special needs. Some of the challenges we see are 1) no one wants to be different or be associated with someone different; 2) the school is larger and blends students from several 'feeder' elementary schools, so the majority of the students are 'new' to one another; 3) the teachers are responsible for more students so it's easier to fall through the cracks; and 4) the guidance counselors and administrators are not familiar with deafness." 

– Janis 

Mainstream schools can help your child grow in different ways

Mainstreaming prepared her for other challenges.

"She wasn't sure about [going to a mainstream school] in high school. But we felt she needed to do it to learn how to use an interpreter in class, a skill that would greatly expand her college options. We started with just 1 class, so it didn't have to be an all or nothing kind of thing. She LOVED it once she tried it."

– Lorna 

She felt more responsible for herself in the mainstream.

"Another big reason for loving public school was that the residential school for the deaf was very concerned about each and every student and made sure they did their homework and paid attention in class. Public school had the attitude that your grade is your business (appropriate for high school, I think). She really appreciated this sense of freedom and being responsible for herself." 

– Lorna

Tips for parents

Advice to parents from a former mainstreamed student 

1. Never doubt your child and always believe your child can achieve in anything.
2. Make sure your child has the opportunity to participate in various activities in the school, community, and other functions.
3. Attempt to always include your child in family discussions and functions -- referring to communication.
4. When the child is of age to understand things and make decisions, always include the child in these processes or encourage your child to go about it on his/her own with you nearby if necessary (i.e., doctor's appointments, shopping, picking out high school classes, etc.). Of course, encourage your child to learn how to request an interpreter for a doctor's appointment! Just a great way to gear your child towards independent living skills.
5. Seek technologies for the home, like text messaging, captioned TV, amplified telephones. Check and see if your state has a distribution program that provides these telephone devices for free and if your child qualifies (e.g., flash/vibrating/auditory alarm clock, doorbell/telephone/fire alarm signaler, etc. (another approach towards independent living skills). 

– Kim Davis

Parents Talk about School Choices*

*The stories below were originally contributed to a team that developed a website for families focused on "raising deaf kids" (See About Us). Minor edits may have been made.

Read this page to hear what other parents had to say about choosing a school for their child who is deaf or hard of hearing. 

Some of the names have been changed to protect the family's privacy: 

David's mom talks about changing schools as her child's needs become clearer. He started out in a total communication school:

“I noticed, or it started to become more apparent that in the Total Communication environment that David was in, in my opinion, he stood out. I wanted him to be able to model himself toward other children as well. Not that he couldn't; these children were equally as bright, but they did not speak like he could. And in the long run, I really started to feel pretty intensely that, my God, this will hold him back. 

“I needed to kind of shift gears a little bit and say we really need to pay attention to auditory training, which I did not think he was getting... I felt instinctively there is a piece missing. There is just something where we are not expecting him to listen as carefully because he can only sign or he can always somehow get his point across... As he got older, as the other children became more adept at signing, that communication method was much more prevalent than was speaking. So, that really was my concern." 

Christofer deHahn talks about his concerns as he works towards mainstreaming his two children who are deaf and have cochlear implants:

“My concerns with my school-aged kids are academic and social. The academic side isn't a major concern right now. However, when working towards mainstreaming, social issues come to play. What if you are the new kid at school, deaf, and don't get the jokes, don't understand the street language, and always have to have these things explained to you? It's going to be hard to make friends that way. Isn't being deaf in the mainstream hard enough? These are the things I am concerned about as we work towards mainstreaming our kids."

Will's mom talks about changing from a mainstream school to a Bilingual/Bicultural program: “Up til now, Will was mainstreamed with an interpreter. He was only one of three deaf kids in the whole school, and the only one who was mainstreamed, so he was rather isolated. Some of the hearing children did learn to sign (especially the girls), but Will never formed any deep relationships with the kids there, even though he did make a lot of hearing friends. The teachers were eager to teach him since most of them had never taught a deaf student before. The main problem was the interpreter. She was an adequate signer, but not as good a voicer. And if she was absent, Will often was sent to the library, or the teachers let other kids 'interpret' for Will. Or he'd have subs who were less-than-adequate..."

"This year it's amazing how effortless communication is. All our issues in the mainstream were communication access; now that is not an issue at all. Every kid in the school can sign anything to him and all his teachers can sign fluently with him. All the kids are required to sign, even the hearing ones. The people who work in the lunch room, the bus drivers, the office staff, the principal and the board are all fluent signers and most of them are deaf. Will's math teacher is male and deaf (I think it's so important for him to see deaf role models)." 

Chris's mom talks about how hard it is to decide whether or not to send Chris to a residential school: "As I sit and watch how much Chris is isolated from a group of yelling boys simply because he cannot communicate with them, I wonder why I haven't noticed before. The fact that he has Down Syndrome probably doesn't matter at all. The kids want him to play with them and often invite him only to move on when he does not/cannot respond. Sigh."

"I am once again questioning my choices for him in the past. He had enough hearing to learn to speak when I made the choice to aid him at only 3 mo. old and enroll him in an oral program. Now, at 8 yrs old, he barely has a language at all and sign language would have come so easily to him. Yes, he is picking is up now and rather quickly. I only wish that I could remember to use it all of the time. It is so hard because I am not fluent enough to use it in every conversation. I am still learning myself. He needs to be immersed in this language to really use it and I can't provide that for him... imagine that. I have done everything I can to be a good mother to him and now it seems that I need to make a choice I said I would never make in order to immerse him in sign language so that he can be happy."

"Of course, I know the residential school is the only place he can really get that. There are only 5 students in the local DHH program, and I just don't like the school in general. The school for the deaf is only a 1 1/2 hr drive away. However, I just can't imagine making that choice. Not just because I need my oldest son, but because I don't know how he could get the same kind of care that a mother gives to her son."

"I want to be the one to bathe him every night. He needs medicine and monitoring for allergies, sleep apnea, frequent ear and sinus infections. He needs love and kisses and hugs and games and someone to make sure he gets involved. He needs his teeth flossed and his hiney washed and he really cannot do those things for himself yet. How can I let someone care for him every night during the week and only see my son on Sat and Sun?? With his mental challenges, how can I know that he will not wander off or get up at night and not know where to go. Oh my God.  I am terrified!"

"Yes, I can move my whole family to Baton Rouge. My husband and I can quit our jobs and my son start a new school. We can move away from family support…grandmas and grandpas and aunts and cousins. Will that be the best situation for my other 2 boys?"

"I am just plain scared... I can't stop thinking about it. Chris is in a great little class now (for past 3 wks) where the assistant can sign and she is working hard with him, but no one else knows any sign. He is picking up more language but hardly every uses it. The class seems fine for now, but I know that he would be happier with other kids that know sign language also."

Parents Talk About Teaching Kids to Read*

*The quotes below were originally contributed to a team that developed a website for families focused on "raising deaf kids" (See About Us). Minor edits may have been made.

Learn what other parents say about teaching their kids to read.

We've changed some names to protect the family's privacy. 

Parents can be reading role models 

Children learn what they see.

"He always saw us - mom, dad, and big brother - reading."

Why they worked hard to help their children read 

For some deaf children, reading can be easier than speaking.

"We realized that speech wasn't going to happen without an all-out commitment. We'd be better off putting the time and energy into reading." 

"Looking back, I'm glad we made that decision. Reading has opened so many doors. For some deaf kids, speech can help support reading. But with her very profound loss and the technology available at the time, English was a second language she had to acquire by sight-reading alone...

A big job, but still smaller than acquiring speech!"

– Lorna 

All kids can have trouble reading — not just ones who are deaf or hard of hearing.

"If hearing was all a kid needs to learn to read, we wouldn't have so many hearing children struggling with reading!"

– Lorna

Each child learns new words in his or her own way 

She looks at the whole sentence to figure out what a word means.

"I was comparing notes once with another mom, and we both had noticed that our daughters read books at a level well above what their English vocabulary would indicate they should be reading. Both girls tended to 'slide' over words they didn't know, grasp the meaning in context, and go on." 

– Lorna 

Cued speech and captioning help him learn new words.

"His grasp of vocabulary comes mainly, as far as I can see, from the presentations of lessons and conversations in the classroom that are transliterated for him, some from books, and some, alas, from captions on particularly funny cartoons that use vocabulary in fun ways, like Sponge Bob Squarepants." 

– Darla 

Keep reading fun 

Find out what your child likes to read.

"I think the biggest thing parents can do is stoke enthusiasm for reading...That means figuring out what your kid wants to read about. And only your kid can tell you." 

– Lorna

She'd read anything — if she was interested in it.

"She got into Steven Jay Gould's essays on natural history in high school. The vocabulary level was way high. But she wanted to read them enough that she'd re-read and re-read and look up words and all that. She'd never do that for a teacher or me if we supplied the material." 

– Lorna 

How they helped their children learn words 

We labeled things around the house.

"I got plastic bins for the playroom and labeled every one: BALLS, CARS, etc. On each label I drew a little picture of a ball or car or whatever." 

– B.D. 

"I bought baby books with clear, bright photos of common objects. They had a 1- or 2- word caption on each page.

We'd look at these together. Say there was a picture of a teddy bear. I'd sign, 'See the bear,' point out the word 'bear,' and maybe fingerspell B E A R. Then I'd say, 'Where's your bear?' and put it next to the picture. And so on.

We [also] got a poster of the manual alphabet and some of those plastic magnetic letters. We'd play match up." 

– B.D. 

Picture books helped him learn words and make up stories.

"We took photos of friends, family, doctors, teachers, school, everything, and put them into little books. We wrote on each page what it was or the person's name. This was our 'Where are we going book,' and we kept it in the car. When we went to, say, Aunt Ann's house, I'd show him Aunt Ann's family in the book and go over all their names. 

We also used this method for things we did on vacation and other special trips and occasions. Sort of simple memory books. Postcards, photos, drawings, etc., in cheap albums. We labeled all with simple sentences. Like, 'We went to the beach. We found a crab." 

Making picture books didn't take a lot of work.

"I would make little books for him. Just stick figures on post-it notes stapled together with simple words.
When he got a little older, he started making his own."

– B.D.

Getting his own magazines made reading them special.

"We subscribed to magazines just for him. He started with Spider, then moved up to Cricket, then Disney Adventures, and now he's getting Discover. Having something come in the mail just for him with his name on it made it special."

– B.D.

 
We let him read whatever he wanted.

"He always had carte blanche in libraries and bookstores. Nothing was too hard, too easy, or too scary for him to read.

The point was to always make reading a pleasure, and never a chore."

–  B.D. 

Watching the movie first helped her understand the book better.

"She enjoyed captioned video versions of kids' literature.
It made it easier to tackle the book afterward, both because she knew where the story was going and because she liked the story. PBS aired dramatizations of several of the Narnia series by CS Lewis. She and her younger brother watched the videos umpteen times, read the books, and played Narnia in the back yard." 

–Lorna 

How helping their children read paid off 

I was thrilled when he started signing books to me.

"One night he grabbed the book out of my hand in exasperation because I was skipping some signs. (Hey, I was tired.)

He started signing himself. I knew we had arrived."

–  B.D. 

I was so happy when he wanted to read a classic.

"My reward would be when he'd voluntarily pick out a classic. Once we were watching a remake of Romeo and Juliet. He was quite taken with it...The next thing I knew, we were in a bookstore buying an edition of Romeo and Juliet with Shakespeare's original script on one side and a modern translation on the other. He was about 10 or 11 at the time." 

–  B.D.

Meet Becky*

*The story below was originally contributed to a team that developed a website for families focused on "raising deaf kids" (See About Us). Minor edits may have been made. 

"To tell you the truth, now I can’t even remember why I was so devastated, but I know I was. It may be because she was going to be different from us, or I knew I wouldn’t be able to communicate with her as well as I wanted to or at all." Becky's Father

Becky is 5 1/2 years old. She was born with a severe hearing loss. Her parents and her older sister are all hearing. They decided to use speech and sign to communicate. Becky has hearing aids and goes to a school for the deaf. 

Learning she had a hearing loss 

Becky was only a few months old when her parents began to think she might have a hearing loss. Her pediatrician tested her hearing by slamming a door. He thought he saw a reaction. But the doctor trusted mother's intuition. She referred Becky for an audiologic exam. 

The audiologist first tested Becky's hearing using behavioral testing. He also thought he saw a reaction. But Becky's mother was convinced that Becky hadn't responded to the sounds. She insisted on an ABR test.

At 6 months of age, the audiologist found out that Becky had a severe hearing loss.  

"It really is amazing because when that first happens to you, it's a pain you can't even imagine you can cope with. And then you go into that action phase, and you start to get more information and you start to act on it, and you almost instantly feel better. Like there's something you can do, you can control it and you can make it better. And then when you try to look back on what it was like, you can't remember."

– Becky's Mother

Exploring options

Becky's parents left the audiologist's office with a pile of information and lists of resources and contact people. They contacted the specialist on children who are deaf or hard of hearing at their local school. They also talked to an audiologist at a nearby school for the deaf. They subscribed to Silent News and searched the internet for information. They read books and purchased sign language videos. They talked to other parents who had been through the same situation. 

Deciding how to communicate

"[The speech and hearing therapist] more or less said to us that we could choose an oral approach, or that we could choose a total communication approach and either way she kept leaving the decision up to us."​

– Becky's Mother

In the beginning, Becky's parents were upset that doctors and other professionals they met wouldn't tell them what to do. 

They decided that what was most important to them was that Becky could communicate and express herself. They wanted her to let them know what she was thinking and feeling. They were less concerned that she be able to speak. 

Because of this and because her hearing loss was so severe, they chose to use both sign language and speech to communicate. 

"I wanted someone to say, 'Hey, I'm a professional and this is the best thing for your kid.' But they were all noncommittal. 'We've only been at this for four days,' I said, but they didn't want to get into that and told us the options and said, 'Make up your mind.' "

— Becky's Father 

Now, Becky communicates fluently with her parents using sign language. Here's what her father said about keeping up with her:

"We're more like memorizing words, but it's her language. So, I'm sure I know more words than she does, but she can communicate better. She even, she's actually on a t-ball team with a lot of hearing girls and one of the moms said to me, 'She makes such great expressions, and she can communicate.' So, I said, 'Well yeah, expressions, you know, they're important for deaf people.' That's where she just, I think naturally is doing that better.​"

​Using hearing aids

In the beginning, Becky only wore the hearing aids when she really needed them. Here's what her mother had to say about that: 

"She understands that there's a time when you really need to wear them. When we go to school she asks us to put them on and then as soon as we get in the car, they come off. I usually give her a little down time and then we put them back on and she's okay with it. But you almost immediately have to engage her in an activity where she knows she needs to listen."

When she was 5, Becky got new hearing aids. Her mother said she's having great results. The only problem is that the aids have broken several times.

"We just came back from testing down there. Absolutely phenomenal! I mean, I'd watch her respond to 'S' and 'SH' at 20 dB. It's just so remarkable to me. Her dad was giving her a bath and she said, 'Don't tell anybody, it's a secret, but I think I'm becoming hearing.' And today, she did so well in the booth with the 'S' and the 'SH' and 'AH', 'OO', 'EE,' [The audiologist] told her to try to say what she heard and she came up with an 'AH' and an 'OO', and an 'EE' and, but she couldn't get the S. She asked how she did on the test and the audiologist told her she was perfect. So she said to her, 'Am I still deaf?"

Meet Debbie*

*The story below was originally contributed to a team that developed a website for families focused on "raising deaf kids" (See About Us). Minor edits may have been made.

Debbie is 5 years old. She has been hard of hearing since she was born. She was educated using an auditory-verbal approach (focuses on listening and spoken language) when she was very young and now goes to kindergarten at her neighborhood school. 

Finding out Debbie is hard of hearing

"Our 5-year-old daughter Debbie is hard of hearing. We first found out Debbie was hard of hearing when she was 2. She was diagnosed with severe flat loss. The ENT made ear mold impressions the same day she was diagnosed, and she was fitted with a hearing aid in about 2 weeks."

Making a decision about how to communicate

"We were grateful that we had no time to make decisions, and felt, you know, empowered by action. At first, The Auditory Verbal Center and library books were our main sources of information."

"We weighed all our options and went to each of the schools for children who are deaf or hard of hearing in the city area. We decided that since Debbie has some hearing we were going to at least try to give her the chance of speaking. For us, it was an easy decision to use an auditory verbal (now often referred to as Listening and Spoken Language or oral approach) approach. The choices that were available weren't choices; they just didn't fit for our goals and Debbie's needs and capabilities." See Choosing Communication Approach

Who helped us?

"We were living in a new city with few close friends and no family nearby. We decided to move closer to a supportive network."

"We had a supportive and unbiased audiologist, otolaryngologist (ENT), and Early Intervention (EI) provider, which really helped in the decision-making process. Because I  know for many people, it sounds like their ENT says, "Oh, this is what you should be doing for your child," and they are not given choices. At that point, you're just desperate for information. You're clueless." See Your Rights As a Parent

"I think that's what parents need. First they need to be given the options, then they need to be shown it in actuality. For example, if we could be shown what to expect and what not to expect the first year and at different ages."

Getting ready for kindergarten

"Debbie just started kindergarten in a public school. We met with the speech therapist before she started school, and her teacher received in-service training regarding Debbie's special needs, so it was a smooth transition. There are 19 students in the class, so it's a small class with 1 teacher."

"Debbie's teacher put a big sign language poster on display and when the class is working on the alphabet, she teaches them the sign language, even though Debbie herself does not use signs. Class is during the morning, and then Debbie is bussed to an enrichment program after school. She uses an FM microphone (see Remote Microphone Systems – My Baby's Hearing (babyhearing.org) in class that she's very comfortable with. We paid for the FM (now called RM) system. Debbie also uses an adjustable, programmable hearing aid."

Working with teachers and others at school

"She's very athletic and loves to be outside, and she loves gymnastics. She wears her hearing aids when she plays, although she has trouble with whistles from far off. I made up a "fact sheet" that I gave to the teachers and coaches to help them with Debbie's hearing. It started off with, "These are just a couple of things that will make listening and hearing less frustrating for Debbie..." We try to put everything in writing."

Getting special services

"Debbie's Individual Education Plan (IEP) written by her teachers and school specialists, says she is intelligible and has "age-appropriate articulation." Debbie receives speech therapy as needed and hearing therapy 45 minutes twice a week."

"At first, it was a battle with the insurance company to have her speech therapy covered. The claims people couldn't understand how speech therapy could help someone with hearing loss. The auditory verbal therapy costs $80 a session, and Debbie goes twice a week. After negotiating with my employer, the insurance company agreed to cover 80% of costs. Insurance was a key factor when we started looking for new jobs."

How Debbie feels about school

"Debbie seems to love school, especially the bus. She's very tolerant with noise. We told the bus driver ahead of time about her hearing aids because I didn't want her to get in trouble for not hearing in case she doesn't respond right away when she's being spoken to. On her first day of school, I was waiting with her for the bus and when it pulled up, she asked me, "Is that my bus?" When I said it was, she eagerly climbed on. She never even looked back..."

"It helps if she's ready for noise, like if the teacher prepares her for a fire drill, so she can set herself up. We try to ask specific questions about school…you know, I can't say "How's your day?" or anything. I think that's probably with most kids. If I pick something specific, then she'll talk about it."

Making friends

"We are friends with other couples of children with hearing loss…At first, we admit, we weren't able to deal with anyone else's problems but our own, but now we are frequently referred to new parents of children with hearing loss struggling with the same decisions we had to make."

"Debbie has a few friends. Sometimes she has trouble joining groups when they're doing activities, or starting conversations at school, although everyone understands her speech. I think it's because she can't hear everything that's going on, so that makes it harder to just jump in. Overall, she's a pretty social kid."

Problems with communication

"Debbie becomes frustrated with communication only when she is tired. She does have trouble with following songs, but that's to be expected. Music classes and reading were very helpful for us. Debbie also has some difficulties with verb tenses and with sounds, like "th" and "f", which may be developmental. She often says, "Spell this for me so I can write it down." Once she can say it right once, she usually says it right the second time."

"Already, it seems like Debbie can decide whether she wants to listen or not. It's hard to tell if she's not hearing you or if she's not listening. It's very important to get her attention first before telling her to do something. Sometimes we use visual cues or talk louder, but usually we just treat her as a regular kid."

What we want for Debbie

"We do desire normalcy for her. Although Debbie is deaf, she isn't "deaf" in the cultural sense of the word. We see her ability to communicate with others as more important than the ability to function in the mainstream, but we want both for her. Even though ASL (American Sign Language) is a beautiful language, we feel that not enough people know it, and we worry about her not being able to communicate in a strange place if ASL is her only form of communication."

"We do worry about whether she will have difficulty finding a job once she's older and in college. We wonder whether being deaf will be an issue. We do think some employers might feel it's definitely a point against her, but we also feel it is important for Debbie not to use her disability as an excuse in the future. We want her to be able to just do her thing and keep going."

Meet Emily* 

*The story below was originally contributed to a team that developed a website for families focused on "raising deaf kids"​ (See About Us​). Minor edits may have been made.

Emily is almost 4 years old. She was born with profound deafness in both ears. Her parents found out she was deaf when she was 1 year old. When she was 2, she got a cochlear implant. 

Both of Emily's parents are hearing. She also has a younger sister who is hearing. Her family uses both sign language and speech to communicate with her. When she was 3, she started going to a “Language Acquisition Preschool" for children with speech delays. 

Finding out she was deaf 

Emily's parents, Gregory and Beth first thought she might have a hearing loss when she was 9 months old. She did not respond to her name or to other sounds. When she was about 1 year old, an audiologist tested her and said she had no hearing in one ear and some hearing in the other ear. Three months later, Gregory and Beth took Emily to another audiologist who had experience working with children. The audiologist tested her again and found out she had little or no hearing in both ears. 

"We didn't get all the information (from the first audiologist). I mean she's a wonderful person, and I know she felt awful for us. She wanted so badly for Emily to have some hearing in there, so that it wouldn't be that, you know, a totally deaf child, you know. And I just think she wanted that so badly for us, that it ended up kind of hurting us in the end because we had to find out."

– Emily's Mother​

The importance of faith

"I don't think we still know why, but [the deafness] has been a blessing in so many ways. We've had many blessings because of it, and we've met people that we would have never met and we've been able to encourage people that we could have never encouraged."

– Emily's Mother

Like many parents, Gregory and Beth were devastated when they first learned their baby could not hear. Faith in God helped them get through the early days. It has continued to help them deal with the hard decisions they have had to make. 

​​"We struggled as a couple, you know, just dealing with the fact that hey, our child is deaf. God, why did you do this to us? Why did you do this to our child?"

"Faith in God [helped us get through that stage]. The church has what they call a Care Group, and there's several couples, families. You can pick which kind of, there's some older ones, there is young newlyweds, don't have kids, there's some like teenagers. So, we found one that we were very comfortable with, and they were a tremendous support group for us."

"We got to realize that God is sovereign, and God can do whatever he wants and whenever he wants and we deserve no explanation, and in His sovereignty, in choosing to do what He would like to do.  I also believe the Bible says that He doesn't give something that we can't handle, but we need Him to be able to handle it."

"So that's how we got through. Their support was important. Frankly, I came down like, I broke down. We had one meeting and everyone was sharing what has God done the last couple of weeks in your life or what are you thankful for that God has done for you. And you can say something or not say something, and I went off. I was very bitter, and I was very angry at that point and not accepting it, and I said I'm not thankful for anything and I just you know, I really expressed what I was feeling. It changed the whole study for the evening because we became the focus, but they were people that were there to support us. The cards came pouring in. The phone calls came, but you know, you can add, or you can take anything away that you want there, but for us, for me I don't know how someone would learn to deal with it without God, frankly, you know."

– Emily's Father​

Choosing total communication

"...To go totally oral? How would we – until she has that ability – how do we communicate with her? How does she tell us that she wants something to drink? You know, how does she tell us that she's hungry?"

– Emily's Father

When the first tests showed that Emily had no hearing in one ear and some hearing in the other ear, her parents weren't sure about using sign language with her. They wanted to teach her to use the hearing she had in one ear. And they were afraid sign language would confuse her.

Emily was almost a year old at the time. 

When she was 15 months old, Emily's hearing was tested again using ABR and bone conduction. This time there was no hearing in either ear. These results convinced Gregory and Beth to learn sign language. But they also wanted her to learn to speak if possible. 

"We just wanted her to be able to communicate with everybody. You know, if she does find herself in a room full of people you know where nobody can sign to her, then we want her to be able to read lips or to be able to at least try to speak to them…We just thought if we just do all sign then she has a very limited amount of people that she can speak to."

- Emily's Mother 

Choosing a cochlear implant 

Emily's parents weren't happy with her speech progress. They were mainly communicating through sign. They started thinking about a cochlear implant. Gregory and Beth had a hard time deciding whether or not to put Emily through surgery. Finally, they decided to go ahead with it.

They thought it could help her for the rest of her life.

"We were wondering as far as, you know, do you want to put her through surgery and then the unknowns. How good will it work for her? I think we just came to if it, if we could give her a shot at hearing, we have to do it no matter what it costs. Money didn't matter, what we were going to have to go through afterwards didn't matter, but if we could improve her life in any way, it was important that we take whatever steps they were to do that."

– Emily's Father 

Emily received a cochlear implant at the age of 24 months.

What happened after she got the implant 

When the implant was first turned on, Gregory and Beth were disappointed that there wasn't a response right away. The first couple of weeks were rough. Emily would cry when the implant was turned on. But after 3 weeks it was clear that she was hearing something. 

"It was three weeks into it... I was in the car on the way home and I called her name, and she went, 'I heard that.' I was so excited I got home and said, 'Greg, she told me she heard me!'"

– Emily's Mother

"She's still deaf. You know, that won't change. Whoever she'd come in contact with and then what if ever something happened to the implant or a dysfunction, you know, then she's not totally lost.​"

– Emily's Father​

Three months after Emily got the implant, her parents were still using sign language with her. The main reason was so that she would be able to communicate with as many people as possible, both deaf and hearing. Her father also said that she would need to be able to communicate with people if the implant ever failed.

"We always notice, like when we're out to eat or in the mall where there is a lot of background noise, she can't hear well enough to understand us, so we use sign when we're out a lot or out to eat in a restaurant or something."

– Emily's Mother 

Working on hearing and speaking

Eight months after getting the implant, Emily could hear down to 15 decibels.
She seemed to understand everything that was said to her, and she was talking a lot more than before. Several months later, she could hear down to a whisper. Beth noted that other people had trouble understanding Emily's speech because she didn't say consonants clearly.

Although Emily's speech was coming along better than expected, her parents and speech therapist continued to introduce new words and concepts with sign. Her parents still hoped to improve their sign language skills. But they said they had learned as much as they had wanted to. They felt it was more important for Emily to catch up on her speech skills. She had missed out on two years of hearing and learning to speak before she got the implant. They say how well their younger daughter, Amy, talked. This made them see that Emily had missed out on a lot of speech development during her first two years of life.

​​"She missed the two most critical years. I never really believed that until I had Amy and you see in a year and half already what she knows and what she understands. She's talking quite a bit already and the amount that she understands of what she hears is amazing to me. Like she understands when we're asking her a question. That's the one thing that Emily still struggles with, answering and asking questions. It's just one of those things. I guess it just came naturally to Amy and it's not just something that comes naturally [to Emily].​"

– Emily's Mother 

Playing with other children

Beth said Emily is a follower rather than a leader when she plays with other children. About a year after getting the cochlear implant, Beth noticed that Emily was a lot more comfortable speaking with hearing children than she had been in the past.

"I've just noticed that she's getting to be more outgoing with the other kids and is speaking either with her voice or signing with them, and even if they don't understand her...sometimes just emotions that she uses with the signs is enough for them to understand."

– Emily's Mother

Beth spoke of one instance when Emily's hearing peers were mean to her because of her deafness. 

​​"We did have one circumstance…a month or two ago, when she was playing with some kids.  I was there and I just happened to hear that the one shut the door in her face. They said, 'Don't let her in, she doesn't talk to us' or 'She doesn't talk, don't let her play with us.' You know, it kind of  broke my heart to see that. I know Emily was standing in the hallway like, why did you just shut the door in my face?"

Going to school

At age 3, Emily began attending a “language acquisition preschool" two mornings a week. The class works hard on teaching language skills. The school officials working with Emily and her parents did not tell them about or recommend this class. They thought that Emily could go to regular preschool or a preschool for children who are DHH. But Gregory and Beth decided they did not want to put Emily in the classroom for DHH. They thought she would not have good speech models there. Her parents would like her to continue with the language acquisition program and also enroll in a regular preschool next year. They hope that in a regular setting, Emily will be exposed to better speech models. 

At the time of the last interview, Gregory and Beth said that they hoped Emily could be mainstreamed by kindergarten. They also hope her speech will continue to improve and that she will one day be able to communicate in both speech and sign. 

I'm very dedicated to her signs. Sign is going to be a part of her life. You know, the goal right now is to get her caught up a bit [in speech], and at that point we're going to work really hard on the sign, because she's deaf. If something were to ever go wrong, she needs to know how to communicate...If the decision was not to get a cochlear implant, I think that sign would have been the primary goal...but with the cochlear implant, speech has to be the first priority. I can't see it any other way.

– Emily's Father


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