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Parents Talk about Communication Choices

Read this page to hear what other parents say about the communication choices they have made for their child. Names have been changed for privacy. After you read the quotes, tell us your own story.

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What parents wanted for their children

  • I just wanted her to be able to communicate.
  • I wanted her to be independent.
  • We didn't want him to "stand out." But we wanted to help him learn language easily.
  • We wanted him to speak our language.

Choosing how to communicate was hard

  • Choosing whether to speak or sign was really hard.
  • I was so worried I would make the wrong choice.
  • It seems there are endless choices.

How they decided how to communicate

  • Keep an open mind.
  • Peter likes to hear words, too.
  • We looked into both speaking and signing before we decided. She was young, so we felt we had more time to choose.
  • It seems that I need to make a choice I said I would never make

Using more than 1 way of communicating

  • Anything that helps you communicate is great!
  • Using sign language and talking, too.
  • I'm starting to open up to speaking and signing.
  • Betsy worries about losing even more hearing. But there are things she can do.
  • Becky can say almost anything using total communication.
  • Writing helped her become confident about communicating with other people.

Sign language helps

  • Start signing early!
  • Sign language helped him learn new words.

What parents wanted for their children

I wanted her to be independent.
"One of the first things I said was I would rather spend the next 20 years of my life teaching her how to talk than spend the next 80 years being her sign language interpreter. You know she's got a long life ahead of her, and I can't be there forever."

—   Diana's Mom

I just wanted her to be able to communicate.

I didn't care so much if she was ever able to speak or not. I mean, I would like her to be able to. But more important than that I wanted her to be able to learn. I wanted to communicate with her, and know my child, and what she was thinking, and what she was feeling. I wanted her to be able to express herself.

We pretty much decided that total communication was the route we were going to take. We were going to give her every option available to express herself.

—   Becky's Mom

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, 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 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 a hearing child."

—   Amy

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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

I was so worried I would make the wrong choice.
To me, total communication allows you to not make the wrong choice. At first, there was always the panic that, oh my God, I'm doing the wrong thing, I'm destroying her for life. But afterwards you realize that you take it a little bit at a time.

—   Lori's Mom

Endless Choices

No choice is written in stone. With our first deaf son we chose sign language and hearing aids. Although we would have preferred ASL, the school system where we lived used SEEII. Soon we spoke with other parents who were also using Cued Speech. The combination intrigued us - access to two complete languages? Great! The school system even had a teacher in their Cued Speech program who knew both systems - we switched our child from CS to Total Communication and back again to allow him to develop peer relationships with both populations.

Hearing aids. The hearing aids proved to be useless. I never saw my son respond in the least to a sound even while wearing the entire aids and FM system. And the presence of molds in his ears seemed to increase his tendency to develop ear infections.

Raising two deaf kids. When our second deaf child was born, we assumed we would just follow the same path with this one as well. Big mistake! Each child is different, so why did we assume that deaf children would be the same? Our younger son didn't show much progress with either the cues or the signs. At four years old, he had developed less than eighteen months of language. We ended up sending him to the residential program three hours away. That was one of the most difficult decisions in my life, and one of the things I swore I would never do!

Implants. Our older deaf son was implanted. We were initially hesitant, but at his behest we went through with the surgery. He was thrilled that the first day he had his new processor, he could hear the dog barking! The younger one is still having problems. We eventually got him implanted. One prestigious implant program refused him due to our insistence on using sign language, but another program was willing to allow him to use both. We found a wonderful person qualified to evaluate deaf children for psychological and educational disabilities who diagnosed a severe receptive-expressive language processing disorder, along with some other mild disabilities. Finally, an answer that recognized all of his needs.

School choices. We now live close enough to a state school for the deaf that both our sons can live at home but still take advantage of all that the school offers. Our older son did well there in middle school. We mainstreamed him for his freshman and sophomore years with great interpreters, but he chose to return to the school for the deaf for his junior and senior years. For our younger son, we tried mainstreaming to see if that would help. That accomplished some goals, but today he is back in the school for the deaf, although we are open to changes.

Be flexible. We have found that no one program meets everyone's needs, and some children may never find a program that meets all of their needs. I feel parents and professionals should be open to alternate approaches and making changes according to the current goals and objectives for our children. Most importantly, we need to accept that each child, each family and each school makes choices based on their experiences and needs, and to recognize and celebrate the diversity found in everyone.

—   E.W.

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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

Keep an open mind.

A critical thing to remember is that one must also be flexible! Needs change, circumstances change, your child changes! What was a good choice yesterday may not be a good one tomorrow for many reasons!

—   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. 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

It seems that I need to make a choice I said I would never make

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 [and enroll him in a residential school] in order to immerse him in sign language so that he can be happy.

—   Chris's Mom

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Using more than 1 way of communicating

Anything that helps you communicate is great!

Sign was the best thing that happened for us. The next best thing was realizing that 'total communication' is just that — total. Anything that enhances communication is legit. You can go ahead and experiment and see what works and what doesn't — your daughter will let you know.

—   Lorna

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

Writing helped her become confident about communicating with other people.

Even when she was just learning letters, Dairy Queen had a kids' meal in a box to which was attached a tag good for a cone at the end of the meal. She'd decide if she wanted chocolate or vanilla. I'd slowly fingerspell the word while she printed it on the back of the tag. Then she'd go to the counter alone with the tag and get the flavor she wanted. As she got older the notes got more complex, and she developed a real sense of independence at the same time.

—   Lorna

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Sign language helps

Start signing early!
"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

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