Appendix

Full Family-by-Family Version of This Document

Family 1

Description of the Family

The interview was conducted in Spanish with the mother. F is a 6-year-old boy with a severe-to-profound hearing loss. He lives in Florida with his mother, 14-year-old sibling, and cousin. No other family members have hearing losses. The mother has completed two years of college and works outside the home. The family speaks primarily Spanish in the home, but mixes in English. The children speak English well, and the mother says that her 14-year-old son, who has normal hearing, speaks Spanish very poorly ... his first language is English. The family moved from Puerto Rico when F was born.

Events and Emotions Surrounding the Diagnosis

Shortly after the family moved from Puerto Rico, it became apparent that something was wrong when F slept through a loud fire alarm.

[Mother speaking] I went to the pediatrician, and I told him all what had happened, and that everyone was telling me that there was something wrong with my baby, and that perhaps it was mental retardation, I never thought that it was because of his ears and then I took him to the health center…and the doctor told me that there was nothing wrong. Some time went by. When he was 7 months old I took him again for his medical appointment for his vaccinations and I told the doctor, 'My baby is not like other babies, something is wrong with him.' And he told me, 'I'm the doctor, you are a mother, you are not a doctor.' But I told him, 'I have four children, and this baby is not the same.' And he told me, 'I am telling you that mothers see things in their children that they do not have. Your son is fine.'

I went to the emergency room and registered him as if he had spent the night very ill and I said to the lady that he had been very ill all night. When I went into the emergency room, the doctor asked me what was wrong with the boy, and I was crying and I told him, 'I think my baby is deaf because I talk to him and he does not turn around and I give him books that make music and things that make sounds and he does not look at them.' I had him sleeping on my lap and the doctor clapped his hands and he gave me a referral and sent him [to the hospital], then he told me that he had a problem. I took him there and then that is where they did the evaluations, they checked him and that is where they confirmed to us that he was deaf. The diagnosis was a severe to profound hearing loss, in both ears, more in the right than in the left one.

The mother said when she first told F's father that F was deaf, he blamed her and refused to accept the diagnosis. A few months later, F's father came to visit from [another country] and later decided to move to the United States and learn sign language. After some medical testing, the mother was told that F's deafness was due to measles and a high fever that he had contracted when he was 2 months old.

The mother said she felt guilty when she found out her child was deaf.

I felt guilty because ... I don't know why. ... when I had [my older child] I said I would have no more children, but I got married again, and after five years my husband kept on saying that he wanted a baby, a baby, a baby, a baby, a baby. … I was told that women must have their children when they are young. My own mother was quite old-fashioned and said that older women have children that are born retarded, that they aren't born healthy, that they must have their children in their 20's, and that is how my grandmother and my mother were, and I thought this was the right way to do things. And so I thought, 'Look, I had this child when I was 34 years old, and look, he was born deaf.' So, I felt guilty, because in order to satisfy my husband and have a baby, he [the baby] has to suffer, because I am not the one who is deaf, and although I try, and do everything I can for him, it's his life. He's my son, I'd like to hear for him, or give him my ears, but he's the one who is deaf, not me.

Language Differences at Diagnosis and in School

The mother said she had trouble understanding the doctor at the diagnosis of her child's hearing loss.

... When [the doctor] told me, 'He's deaf,' I did not understand the term 'deaf,' I was not familiar with it, I did not know what 'deaf' was. When he told me it was a 'severe-profound hearing loss,' then I could translate it word-by-word and I understood: severe to profound hearing loss, but I did not know what 'deaf' was. And I asked him, 'is there someone here that speaks Spanish? Because I do not understand.' Then he [took hold of me] by the shoulders and said to me, 'It is not that you do not understand, it is that you do not want to understand.' And I told him, 'I do not understand what deaf is. What does 'deaf' mean?' Then he said to me, 'No hearing.' And I said to him, 'He does not hear?' and he told me, 'No.'

Interviewer: Did they give you an interpreter?

A nurse who spoke Spanish came.

Interviewer: How did you feel talking with an interpreter after just being told ...

I felt as if I was 'at home' because she... she ... was a Mexican woman, a very good person, and she said, 'Don't cry, try to calm down so that I can tell you what the doctor has said.'

They explained things to me, but it is very difficult because they explained things to me in English, with medical terminology.

Interviewer: Do you feel that language was an impediment at this moment?

Yes, it was an impediment, because ... if it had been in Spanish, although it was hard to accept anyway, one can ask questions, one is free, one can ask the questions like one wants, but it is hard when one feels like they are trapped by a strange language. The words don't come out, they don't come out. I just asked, 'Why, why, and why?' and 'What can I do? What can I do?' and they said, 'There is nothing we can do, he's deaf.' And this I'll never forget because they always said, 'There is nothing that we can do, there is nothing that I can do, there is nothing that you can do, he's deaf.' And that's how things stood.

Information Access and Support

The mother says she was told that there was nothing that could be done for F, no operation. She was given a pamphlet written in English, which she had trouble understanding.

So I began to read, and I came to understand that in addition to hearing aids, there is an operation to connect tubes, as this helps them to alleviate the pressure of the liquid that stays, and I began to call doctors to find who, who could help me, where I could take him, and I got an appointment to take him to [a children's hospital] in [a Florida city]. And that is where they gave me hearing aids, and there they gave me an appointment with an ENT [ear, nose, and throat] doctor. He did an evaluation and referred me to an audiologist and they recommended (he was almost 9 months old now) that I take him, that I register him with the county where we live, to register him in the county and in school.

A Hispanic audiologist explained how the ear works and why F could not hear. The audiologist suggested that the mother register F at school, learn sign language, put hearing aids on him, and show him how to use them all the time. The mother said this audiologist, took her time with me and with him, and was very sweet, very human. She explained that F needed to start school right away so he would not fall behind. Another professional, whom the mother refers to as a nurse (this person appears to be Hispanic), was also helpful.

The woman, the nurse, that helped me and gave me the support I needed on the day that they told me he was deaf, she told me, 'Don't be self-conscious, look for help. Look for help for your son because there is a lot of help. In this country, there is a lot of help. Perhaps not in our countries, but here there is a lot of help for them. They are like any other child. Just look for help, it is there.'

At 11 months of age, F was registered for school and got his first hearing aids. The mother began sign language classes and also received a video that explained how deaf people hear. She found the video to be very helpful.

The mother sought a second opinion from another doctor. This doctor informed her of available governmental services, such as Social Security Disability Insurance, and also recommended that F begin school right away.

Choosing a Communication Method

The mother received conflicting advice about communication methods. The family developed a good relationship with the early intervention teacher, who advocated total communication.

I had to decide what type of communication we would use, sign language or ... whatever we would do. The teacher contributed a lot, she helped us a lot, because she explained the advantages of total communication, which is what we use with him. If he goes out and has contact with other people, if I had taken the advice of 'only sign language,' when my son goes out to play, those children that are outside, will not understand him. And she explained these things to us. Well, she is in favor of 'total communication.' And there are other teachers that are not, but I had the good fortune to have her help me with this. And I believe this was the most difficult decision of all that I have done with my son. The biggest thing I have done is to decide how to establish communication with him.

The teacher in F's pre-kindergarten class, in contrast, did not believe in total communication. The mother asked the county to change his school and they did.

The audiologist also influenced the mother's decision.

The audiologist told me, 'If you put him in school, if you put him in speech therapy, if you always are sure to have him use his hearing aids, when he goes to school, he will be able to go to a regular school.' And she told me, 'I cannot guarantee this, but as a result of my experience, I can assure you that this will occur, because the children that are cared for in time, receive good training, they overcome, they excel, and it is true. My son is now in a regular classroom, in a regular kindergarten class, and he has an interpreter. But he is in a regular classroom.

The audiologist was the mother's chief source of information. She also considered other programs: a private school, which she rejected because she didn't have the resources and it was far away; and an in-home program. The audiologist said the school program would be better because the materials available there weren't available in the home. The mother also observed some home visits and felt there would be too many interruptions in her home. The school program she chose uses total communication and was fantastic.

Language Preferences

The mother expressed some regret that her older (hearing) son does not speak Spanish.

We are trying to avoid the error we made with the older boy, so that later he will follow his culture and language, which is Spanish. We want them also to speak in English. But with them, with the three little boys, we are trying to educate them to be trilingual, that they will be able to speak Spanish, English, and know sign language.

However, she was discouraged from using Spanish with F.

They told me only to use signs, or if we would use signs with Spanish or English. They have always been against my using Spanish. The teachers have always been opposed to this. They want it to be English, and that it is English in signs. But they say that Spanish will confuse him, because it is hard for him ... but [laughing] he understands Spanish perfectly.

Interviewer: How do you feel about this advice they gave you?

They are mistaken, they think professionally, they are not part of our culture. And they have no idea how important it is for us that our children preserve their language-hat they dominate and perfect English, but that they also dominate and perfect their own language. This is very important to me. He has a family, he has his grandparents and aunts and uncles that speak no English, and know absolutely no sign. So if my son does not speak Spanish and understand Spanish, he will be completely lost within his family.

I want him to be trilingual when he is an adult so that he interacts with his family in Spanish, that he obtains a good job, that he is well paid because he can speak three languages, that if someday he finds himself in a group situation where everyone is deaf, he will be able to communicate with them on an equal basis, that he does not feel apart from the Hispanic group because he is Hispanic, that he does not feel as an outsider with deaf people because he is deaf, and that he does not feel as an outsider with English because he lives here, it is the language of this country and he must be fluent. I think he will have more advantages than other people. And for this reason, I want him to be able to communicate in the three languages.

School Choice, Personal Style, and Advocacy

F has attended five different schools. At age 6, he is in a regular kindergarten class with a sign language interpreter. He is the only child with a hearing loss in the class, and goes to a hard of hearing class in the afternoon. The mother has had to fight hard to get what she felt was appropriate for F, and she was assisted by a Program Specialist for the school district's deaf and hard of hearing program.

The school where he is now I did not choose, I didn't want it. But the county said that there is no other one, and they assigned him to this school. I made them change, because there, there was no voice used in the class, because they are deaf. I communicated with people that helped me. There is a woman that works for the county ... she helped me a lot . Thanks to her, I basically got what I wanted, which is to have an interpreter in F's class, and that the teacher of the class is oral because she is not non-oral, she is oral and can talk. I spoke with the superintendent of the schools, of all the schools in the county. I explained all that was happening with him, with my son, what I wanted for my son, and the things to which he has a right. I read a lot. And…I knew that even though they told me that they had an interpreter, they really didn't have one, and they had to look for one. ... I suppose that they didn't have the money, but they got it and assigned one, an interpreter. The school, the school itself is OK. It has a good program, it's just that if you don't pay attention, the program is not handled appropriately. But now, for F, well, it's super.

The mother has also demonstrated the importance of advocacy for her child through her interactions with other parents.

I've made friends with the mothers of children that have been with him. And from there, with another mother, I'm in the process of organizing a support group for the parents of deaf children ... for Hispanics and Americans also, because it's incredible, this summer we went to a camp organized by [school]. And in this county, as big as it is, there is nothing, there is nothing. We are like this, just as you see us, nobody knows anything, and from there came the idea to form a group ... of parents, of mothers that ... that are trying to obtain that which they [the deaf children] have a right to have, that which the law says they're entitled to have. And if I have to force them to change the law, they'll have to change it. [laughter] …when I can't express myself in English, I speak in Spanish and let them look for someone to explain it to them because they must hear me out.

I have learned things. Yes, I at least, I think, that I need to investigate more, and know someone who knows more, and gain more information. I have learned from the experience of other parents, situations different than mine, or ones that are similar. And these, and these experiences about which I have been told, when they happen to me, as is what has happened, I know the consequences of the things that can be done. I have studied the law, the law IDEA [Individuals with Disabilities Education Act], I have studied it. I have studied about the things that are necessary, Total Communication, sign language only, or English only. For example, I met a young man that speaks Spanish and English. It's very hard ... his speech isn't clear, perfect like ours. But he speaks Spanish, he speaks English, and he knows sign language. It can be done, it can be done ... There are people, there are young adults I have seen that are fluent in all three languages. I know that it can be done. I know that each case is unique, but I know it can be done.

What has worked for me is that one must sit down and I write down 'pros,' this will work for this, this, and this, and I make two lists. It doesn't work because of this and this. Which one has more? Which can I eliminate of the ones that don't work? What can I eliminate of those that function when they are related to ones that don't function, in order to make a balance? Because when [one] looks at things [like] this, they appear differently.

The Role of Church and Faith

The mother says she put everything in God's hands.

I talk a lot with my pastor. I ask God to give me the wisdom to make proper decisions for him [F], not just what I want. …. I took him to healing service at a church that is about two or three hours away from here, when he was 2 years old… I believe, I am sure that God helped his ears, even though he needs the hearing aids. But God has a purpose for F ... and when F is a man, we'll see.

Information and Feelings About Cochlear Implants

F's mother was told that he would not qualify for a cochlear implant because of the amount of hearing he has and because he speaks clearly. She did not pursue this further, although she has seen other children who have benefited greatly. If it could work for my son, F would be there [getting an implant], she said.

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Family 2

Description of the Family

The mother and father were present for the interview, which was conducted in Spanish. T is a 7-year-old boy with a severe-to-profound hearing loss. He lives in Florida with his parents, brothers, and sisters. The mother is a homemaker and the father works in a blue-collar position. The family moved from Puerto Rico six years ago, looking for better services for their child, although at the time, hearing loss had not been confirmed.

[Father speaking] [We moved] primarily, because in Puerto Rico we knew he was going to be marginalized and we knew that here we were going to find better services related to doctors and education.

The parents suspected deafness because T did not babble and had a high-pitched cry. In addition, as a result of birth complications, he had been in intensive care and had received medication that could have been ototoxic. The parents attributed his hearing loss to this medication, but later learned that he had other congenital problems that suggested he might have been born deaf.

Events and Emotions Surrounding the Diagnosis

Shortly after arriving in the United States, T's hearing was tested and he was found to be deaf. After that, the parents took him to an audiologist where a profound hearing loss was confirmed. T was nearly 2 years old at this point.

[Mother speaking] When I asked the doctor what were the alternatives, she told us there were no alternatives-only the hearing aids that cost almost $2,000. We did not economically have $2,000. We were at the mercy of the medical insurance if it would cover it or not because there was no more help.

With the diagnosis, the mother said she felt as if walls fell down.

... We had a tendency to think that everything is okay and I thought everything was okay, and then you know how I think, now this.

Language Differences at Diagnosis and in School

The diagnosis was given in English, but an audiologist who spoke Spanish was there as well. An interpreter was not needed, according to the mother, because I understand English well. She said she understood everything at the diagnosis. The mother also said she would call the Hispanic audiologist when the doctor was away or when she had questions about hearing aids or other things.

[Father speaking] All the time we talked to her, it was in English. By language, we have never been discriminated nor have we had lack of information. Everything has been clear like in black and white.

Information Access and Support

T was already in a Head Start program prior to diagnosis because his speech development had been slow. At diagnosis, the parents were told that his hearing loss was severe to profound.

[Mother speaking] ... My question was what alternatives there are, and how can the child progress with this because that was our concern. She told us that the alternatives that there are now, are not that many because the child is one step before being deaf ...And then when she shows us the hearing aids, she tells us the hearing aids are for him, for his condition, she shows us and tells us, the hearing aids cost a lot, the medical plan does not cover it, but we can do the arrangements and then my husband and I decided, well, we have to do the arrangements because he has to have them and there is no other alternative. There is no other alternative and then after that, she talked to us about the school in [another city].

At every moment, we look to see if there is another alternative besides the sign language-we want it, we want that alternative. She told us, 'Everything is going to be clear when the boy has the hearing aids, with the way that he uses his residual hearing, how much he will be able to hear. But with the hearing aids there was not much success so that's when we decided on the operation.

The doctor went on to explain cochlear implants to them at that time. While the parents were satisfied with the medical information they received from the doctor, they understood that other sources were needed to find out about educational alternatives. They also understood the underlying motivations of educators from different school systems.

[Mother speaking] It depends on the professionals. If the professional is the doctor, they're going to talk to you in the way of the doctor. If you are in the school, and the professionals of the [county], they get paid by the [county] so they're going to offer you the alternatives that [the county] has and if you're in [a city in Florida], you're going to get the alternatives of [a city in Florida]. So the ones from [the county] are not going to say, 'You don't want signs, well then there is a school in [a Florida city] and we're going to transfer you there.' You're never going to hear that. Never.

Interviewer: So do you think they were giving you the alternatives?

Only in accordance to what they had in the county, not the alternatives that I wanted for my son.

Choosing a Communication Method

At first, the family began using some signs with T, to reduce his anxiety with communication, but dropped them after about six months. The parents favored an oral approach.

[Mother speaking] The people in the county were offering us sign language ... we had to look for other alternatives because we don't want to limit him.

[Father speaking about visiting two schools] We didn't like it because they were using only signs and they were not speaking clearly, they only made noises. We went to the other school where there were children with the same condition and they were talking. So from that moment on, that's when I said, 'This is what I want for my son.'

School Choice, Personal Style, and Advocacy

The family had purchased a home in one town, then learned that a nearby city offered an oral program for children with hearing aids. The parents negotiated with their hometown to pay for their child to go to the nearby city and to transport him there. T began in a class that was for children who were mentally retarded, but the parents objected and managed to get him moved into another class.

[Mother speaking] We have friends that are lawyers and they help us and they counseled us, 'Tell the county that you want a teacher that is specialized in working with hearing impaired children. And since they don't have it, they have to transfer you automatically because of the law. The child has the right.' And we went to talk with the county and the board and she prepared us with a binder with all the laws and she underlined all the laws with a highlighter very clearly, all the rights that the child had ...

[Father speaking] Yeah, the rights that we have, but the county is not interested in recognizing ...

[Mother speaking] One is never told about all the alternatives one has. When we opened the file in the meeting, they saw that the legal part was also there and we expressed our point of view. Of course, we were prepared ahead of time, both of us, what were we going to say, how we were going to talk about it and of course there were problems because there were people that were not in agreement with it, but we were prepared for that. So then finally they transferred our son. So, then the doctor saw that we were pushing for the child's well-being and she realized that we were fighting for our son to succeed, not only for the operation.

The Role of Church and Faith

The mother says belief in God gave her strength, but the family does not attend church.

[Mother speaking] Not the church, not a pastor, not a priest, not the church itself, but, yes God,in his totality, the belief of the Powerful God, that is the one who guides us, that who opens the doors and gives us the strength, but to tell you that we went to a church? No, no, no, no. It was God and us. And, yes he opened the doors for us, he has enlightened our path, which hasn't been easier. The decision about the operation was deciding the future for him. If he wants to learn signs later, fine, I don't have a problem with that, but at least I can say that I did not limit him. We looked at all the alternatives.

Information and Feelings About Cochlear Implants

When T was 3 ½, the doctor brought up the subject of cochlear implantation.

[Mother speaking] She talked to us about the implants, but she didn't give us a lot of information. She did not insist. It was like, 'this is an alternative for the child and the result has been good.' Because at that moment she had given us that information, the operation was not being performed in small children, in very small children.

At first, the parents dismissed the idea, partly because they were told it was an extremely expensive operation ($45,000 was, way out of our reach), which their medical plan would not cover, and partly because T was still very young. Then, about a year and a half later, the doctor brought it up again.

[Father speaking] She told us that doing the operation to children like him … the clinical outlook is perfect for him, for T. The possibilities of improvement for T … not to tell you that it's going to be 100 percent, but 95 percent. So she said what we will have to deal with is the medical insurance.

Their medical plan approved the surgery. These parents decided to get a cochlear implant for their child in part because of the information they received from the doctor who diagnosed the hearing loss. They clearly articulated their desire for T to speak and hear. They also investigated the implant option at great length by talking to teachers and to parents of children who had received implants.

[Father speaking] We started talking with parents that had the operation, looking at the students with the operation, looking at children with the operation, talking with teachers . The teacher gave us names of children we could see that had had the operation.

[Mother speaking] And she showed us a child with the operation that was poorly done. So we saw everything. We saw the operation badly done by a doctor. That means it is a responsibility, it's our responsibility, because we are choosing the future for T.

T was 5 years old when he had the surgery and at the time of the interview, he had been implanted for nearly two years. The parents are thrilled with the changes they see in him:

[Mother speaking] From earth to the sky! I recommend it to any person if the doctor says that the child is a good candidate and if the parents ask me my opinion. I will recommend it 100 percent. Come sit over here. I will recommend it 100 percent.

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Family 3

Description of the Family

Both the mother and father were present for the interview, which was conducted in Spanish. S is an 8-year-old girl with a profound hearing loss. She lives in a small town in Texas with her parents and a 1-year-old sibling. The mother is a homemaker and the father works in a skilled trade. The family moved from a small town in Mexico seven years ago, looking for a better life and a better job.

[Mother speaking] In Mexico there are no possibilities for a good life. There aren't many jobs out there, the pay is very low. It is very difficult to live in Mexico.

The parents speak only Spanish, but say that S is learning more English than Spanish in school.

Events and Emotions Surrounding the Diagnosis

The parents first began to suspect hearing loss when S was 2 years old, because she wasn't talking or paying attention to them. Although the family was living in the United States, near the Mexican border, they took her to a doctor in Mexico, who referred them to an ear, nose, and throat doctor (also in Mexico). The doctor told them S was deaf.

[Mother speaking] It was very bad for me because I was not expecting it. All of a sudden he told me that my daughter could not hear anything and that she would never be able to speak ... those were his exact words. He did not even examine her. The first time we went to him, he did not [examine her], he only checked her as he would have for any other illness, such as a cold, and later he said, 'the child does not hear and that is why she does not talk.' He said, 'she does not hear a thing and if she does not hear a thing, she will not speak a thing.'

After hearing this news, the mother talked to an aunt who lives in another state; the aunt called the school nurse at her son's school and the school nurse called the school where S and her family lived. The school contacted the mother, ran some tests, and then referred her to a program, which sent her to a city in a different state for hearing tests. The tests showed that she was almost completely deaf. It was about two months after the initial diagnosis that they received the conclusive diagnosis. They also took her to a second doctor in Mexico, who gave similar test results.

Both parents said they felt very sad when they learned of their child's deafness.

[Father speaking] We think the worst, that she may not be able to speak, that she will not be able to study, that is the first thing that comes to your mind.

Language Differences at Diagnosis and in School

At the diagnosis, the parents said that although the doctors and audiologist did not speak Spanish, interpreters were always available.

[Mother speaking] Also, we never had any difficulties regarding that [language] because they always have people that help us [translate] with the doctors, at the school, with everything. They always have someone who speaks Spanish. One struggles but, well, one wishes that the doctor would explain things. Many times when they are translating they use different words and one can get confused, maybe that is not exactly what the doctor means.

Nonetheless, the mother said, We think that we understood everything that we were being told.

At school, S's current teacher speaks Spanish, although some of her former teachers have not. This has at times created difficulties, with the mother having to seek out someone to translate. Written information was often sent home in English.

[Mother speaking] I was talking with the teacher a few days ago when we went [to the school] and I told her to send me the messages in Spanish because there are times they are in English, and I just look at them, because I don't understand them ... we would like to be able to speak the same language as them, but if, I mean, that would be better, for us to speak the same language, but we do understand each other more or less.

…Sometimes one struggles, but does it affect us? No, because this is an area in which most people speak the two languages. If she does not speak it, the person next to her probably does; therefore, it is not too difficult.

Information Access and Support

S was fitted with hearing aids right away after the conclusive diagnosis in a Texas town. She was 3 years old at that time.

[Mother speaking] They told us that in one ear she is completely deaf, and in the other ear she can hear a little bit.… They only told us that she needed the hearing aids, that she was not a candidate for surgery because her problem was in the nerve that is connected to the brain, and that cannot be corrected with surgery, but that with the hearing aid she could speak, maybe broken, that was a possibility if she used the hearing aids all the time. It was a possibility, but it was not something for sure, but maybe she could hear more.

[Father speaking] The doctor who performed the last hearing evaluation, said that there was an operation, maybe it is already being done, but at that time two or three years ago the operation was not available, that maybe when they would start performing that operation she might be able to get it.

[Mother speaking] The doctor said to get the hearing aids and to find a special school for her and that was going to help her. That is what he told us to do ... He told us about a program in New Mexico that helped us a lot, and he told us where the schools were located.

The mother added that since they left New Mexico, S no longer has a regular doctor, and, therefore we don't know if there is something new that might help her.

The audiologist gave the parents information about hearing aids.

[Mother speaking] That they were going to help her hear a little bit more and possibly they could help so that she could talk.

Information From Deaf Adults and Other Parents

The family realized their daughter could be successful after discussions with other parents of a deaf child.

Not too long ago we spoke to the parents of a deaf boy and they said that their child is doing great. Also, the mother of an older deaf boy, now a young adult, was telling us that her boy did very well in school and that he is in college now. When we hear that, we tell ourselves that our daughter is going to make it, just like him. Before we would think that our daughter was not going to be able to [learn], she is going to be a nobody; we were traumatized [aggrieved] by that. When we see [positive] things like this, it helps us move forward.

Language Preferences

S's first language is sign language, but the mother thinks it is important that she also learn both English and Spanish.

We were discussing that with the teacher when we went to talk with her. I thought that it was too much for S because she was learning sign language and English, and I wanted to teach her Spanish. I asked the teacher if it was too much for her to teach her the three languages and the teacher said that she could do it. I told her she is learning to read and write, but she writes in English. My relatives tell me how great it is that she knows how to read and write that way they can write to her, but [she reads and writes] in English and nobody in my family knows how to read or write in English. I would like for her to learn Spanish because that would make it easier for us to communicate with her. I believe that all three languages are important. Because the family speaks Spanish, at school she needs to communicate in English, and she needs the sign language if she is not able to speak.

The mother also said she speaks to S in Spanish and S seems to understand. She doesn't feel this has affected S's progress in school.

School Choice, Personal Style, and Advocacy

The mother said that at first, there were no special school programs available so her daughter was attending a regular school program.

[Mother speaking] … the teachers were trying to teach her and to learn themselves at the same time, it did not help her much. When we moved to this city, that is when she started attending a special school.

[Father speaking] The doctor here in [a city] did tell us that if we placed her in a special school she was going to speak, not the same as we do, but with time she would speak.

Once the family moved to a small town, the local school referred the mother to the school for the deaf in a neighboring city. The mother says it is a good school that uses sign language and speech. She was not given any other options from which to choose and did not visit any school programs.

The Role of Church and Faith

The parents felt that their religious beliefs have helped guide them in what to do for their daughter.

[Mother speaking] We have always had faith that God is going to help us to move forward.

Information and Feelings About Cochlear Implants

The parents have received some information about cochlear implants through the news media.

[Mother speaking] We heard about them after S had stopped seeing her regular doctor, we heard in the news in a TV program, but have not taken her to see if that operation would work for her ... what we saw on TV is the only information we have about cochlear implants.

The mother said she would like to get an implant for S, but has not pursued it further.

[Mother speaking] A girl that goes to school with our child, she lives close by, we found out that she had a surgery done, but I have not spoken with the mother and I don't know if that is exactly the type of surgery she had, but we think it was a cochlear implant. We don't know if it has helped her, I don't have any information. S told me that the child had ear surgery but I don't know exactly what …

... We do want to [get an implant for S], but since she does not have medical assistance we would need a lot of money. We are willing to do it, but that has kept us from deciding. Also, I don't know exactly what the surgery is and who can benefit from that surgery.

Family's Satisfaction

The mother said she is happy right now because her daughter can read and write.

[Father speaking] Yesterday we went to a meeting and they gave us very good news. She is one of the most advanced students in her class and for next year they want her to attend certain regular classes, with hearing children, along with her interpreter because she is very advanced.

[Mother speaking] Right now she is learning everything that a hearing child of the same age is learning, because we have compared her with a nephew who is in the same grade as S. He knows how to read, she knows how to read; she knows how to add, how to subtract, we could say that she is at the same level as a hearing child because they are teaching her everything.

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Family 4

Description of the Family

The mother and father were present for the interview, which was conducted in Spanish. M is a 12-year-old boy with a severe hearing loss. He lives in Texas with his parents and a 17-year-old sibling. Both parents work outside the home. The mother is a bookkeeper and the father is starting a business and presently works in a restaurant. The family moved to the United States from Mexico four years ago.

[Mother speaking] [A son] should be the priority, right?

[Father speaking] We had the option because when we realized that he was not hearing well he was about a year old. Since he was born in [in a city in Mexico], we didn't really know if he could hear or not. There the doctors in [that city] are more deficient. They didn't take the precautions to find out. When he was about a year and three months, he entered school. Since that time he has been in school with speech therapists, and all those things. He was in a special school for deaf kids.

The parents speak Spanish in the home, although the mother says she fully understands English, studied English at a community college for one year, and is taking a course at a college. The father said he understands spoken English better than he reads English. My English is about 50 percent, he says.

Events and Emotions Surrounding the Diagnosis

The parents first realized M had a hearing problem when he was one, because he was very quiet.

[Mother speaking] My family is very expressive and shows many expressions of affection, and when we were playing around, I noticed my son made a great effort to laugh. I noticed he wasn't able to make basic sounds, no 'papa,' just 'ab-ab-a.' And he would babble very little. A year later he continued to babble 'aba,' instead of 'agua' [water]. That is why I thought he had no residual hearing back then. Then I took him to his pediatrician and he told me not to worry ... Another thing he asked was if I had any deaf people in my family and then he said, do not worry, there are some kids that start talking late or maybe they have a problem with their tongue, what they call a tied tongue.'

The doctor recommended they see a speech therapist. After four months, there was little progress.

[Mother speaking] Then [the speech therapist] told me, 'You know your son has a problem. I am going to ask you to take him to a neurologist.' That was when we brought him here [to the doctor], they did an evoke response test and they told us he was deaf. We took him to the doctor, with a neurologist, in [a city in Mexico]… when he gave us the news, it was like a bucket of cold water showered us. 'Your son is deaf. You have to take him to an institute so he will learn to talk.'

The parents said they were at first disturbed to learn of their child's deafness, but then became optimistic.

[Father speaking] It was very traumatic, because one sees the problems sometimes with a certain kind of stigma that you will say, 'oh, what am I going to do?' One thinks that we're just going to draw on our glass of water and sometimes that is not the truth. We have learned how to live and we are very happy with the kids, and we realize that there are many ways and other sources that we can help him with so he can progress and succeed, and I think they are doing it right now. There is hope there. We have hope. M is really progressing right now and we're just waiting for something new to come out. This is our hope.

[Mother speaking] We just felt that he was going to suffer a lot. We thought that he was, that it's going to be all right, then at the same time we thought that we have to help him out, we have to do something about it. We are very happy. We have a great family. We are a good couple. We have a great marriage. We talk to our [other] son, and we told him the news that his brother was deaf. We were all very sad because he's a kid that has his limits now, but if you think the positive way and you analyze, one has to be calm in this kind of situation. We have to look for the solution. If a door is closed, we have to go and see if there is another one open and that's the only way that we're going to be able to help him.

Language Differences at Diagnosis and in School

The diagnosis was given to the parents in Spanish. The audiologist who fitted M with hearing aids spoke English and a nurse interpreted. The parents say that for the most part, they can understand the audiologist's English, but sometimes ask the nurse to translate just to be sure they are understanding him correctly.

Most of the time, information from the school is given in Spanish, but sometimes, especially outside of school, only English is used.

[Father speaking] We don't know the English language as we should--we always struggle with it. It has never been, for me and I think for my wife too, it has not been a problem. It is an obstacle, though, because it's been more than just understanding it. Everything that we have been told and/or we have been given an opinion on, and at school, for the child, and about his health-we have understood everything perfectly, I think. When there is a doubt, we look to others to clarify it; we don't keep anything that, I mean, well, no, no, no, we find a way.

[Mother speaking] Yes, yes. That is very important. We always ask, always ask. If we don't understand, we will say, 'Listen, lady, we have some questions. We don't understand something. Please help us. We have doubts about this and that'.… Everybody makes an effort.

Information Access and Support

The family obtained information from a school for the deaf.

[Father speaking] They gave me a lot of literature. It was all about behavior, education, and the school itself, things that he could do here in the school, what was the most convenient thing for him to do ... It helped us a lot, especially about his education, which is the topic we are talking about. They gave us options that he could have, but then we didn't know exactly what we were going to do. They gave us ideas on where we can go or what we can do. Then they just told us you could go to this school, to this place, to that other school. They told us he was going to learn how to sign, he was going to have his speech-language therapy with him and they told us also that he was going to learn how to read lips and all of that. Now we can see things more clearly.

The parents felt that the information they received was highly supportive and offered in a spirit of teamwork.

[Mother speaking] I felt that they were giving us that information and advice because they were inviting us to participate in everything that had to do with M. I thought that we were putting together a nice team to help him out.

Information From Deaf Adults and Other Parents

Meeting deaf adults has been helpful to the parents.

[Mother speaking] There are a lot of people that we met and they really are the ones who are helping us, intervening with decisions. We were looking for someone to help us with a solution to the problem and there we met a gentleman. He's someone from real estate and he gave us an address that we can go and meet this couple. They have a daughter and both are deaf, but they seem to live a normal life. They communicate pretty well with us. They both work and she doesn't really have a lot of audition, but he does, a little bit, and we thought that if they can do it, we think that M can do that too. That's what everybody tells us.

Choosing a Communication Method

The teacher at the school for the deaf apparently presented the parents with only one option, sign language combined with speech. The parents expressed satisfaction with this option.

[Father speaking] They [the teachers] told us that it's a system that goes together for him to better express his ideas and to better understand other people and for him to also express his ideas in a better way. They [signs and speech] were always used together. They always have to go together for support. …. At the beginning, I didn't agree with the sign language because I thought that he first needed to learn how to talk. He has a teacher that is also deaf, but she can talk ... When she talks, she does signs and she moves her lips at the same time and one can understand the word and that is one of the things that made me think sometimes that one day my son is going to be able to talk like her or at least to make himself be understood.

Language Preferences

The parents communicate with their son primarily through English-based sign language.

[Father speaking] We removed the Spanish completely because Spanish and English, both together, it was too much to mix for him. We definitely said no more sign language in Spanish. If he forgets his signs in Spanish, well, what are we going to do?

I wish he could learn both, but it's very hard for him, and the most important thing is that he learns how to sign in English in order to communicate. That's the reason that we are here. That is the option that we made and he can learn English now, and maybe later he will be able to do sign language in English.

[Mother speaking] Before he used to sign both English and Spanish and he was getting confused.

[Father speaking] We would like for M to continue his sign language in English because it's what he knows more right now and it's his future. We are not planning to come back to Mexico, so first it's the English, and then maybe Spanish, if he can.

School Choice, Personal Style, and Advocacy

The parents say they never sit still.

[Mother speaking] You have to grab the bull by the horns or things will go downhill.

[Father speaking] We are looking for everything out there. We are trying to push him as much as we can and we are determined to do everything we have to do in order to help him. We never just stay in one place and don't do anything. We need another opinion or other advice. We are always looking for another opinion, always, always, always. We have had that idea, my wife and I. We always have to keep going, looking for what is there, what is next. I remember when that doctor told me that M was deaf, he told us in Spanish. We felt pretty bad, but since then we have never stopped. We also have sought a lot for God's help.

[Mother speaking] We know that the future of our son is in our hands, and we have to place him in the right hands, the right people that really are capable of giving him the tools to succeed …. I see a bigger future for M. I'm not going to cover the sun with my hand, I'm just going to let the sun come out and see him.

When M was 4 years old, the family moved, and the parents went to a center with an early intervention program for special education children.

[Mother speaking] [What] they told us was that they were going to study M's case and they were going to see what they can do. They really tell, they really told us what they already have prepared. These are the resources that we have and we trust them, we trust what they were telling us and they gave us all the information and written papers. So we analyze what they give us, and it looks good for us, we believe that that is ok for him. But they didn't mention to us about other things outside of what they offer ... When they talked to us about their programs, we said that is fine, it's okay.

They didn't give us options. They gave us that option, and we saw that obviously M is not talking. He is going to use the signs and the lip reading. I think that that is the best for him. If they give me another option, and we can take it, we can go ahead. We are very open. But, up until now, this is the best option we have. The best and the most important thing they told us is that M was going to go up to wherever he wants to go and they told us that they were going to help us in every way. What I like about the program is that they told us that M was going to go farther. They didn't tell us, 'Okay, M is going to be in this program and he's going to get up to here, up to this point, and that's it.'

The parents have found it necessary to advocate for their child in a range of situations.

One of the things that has bothered me is the transportation, where I have not obtained a good answer. Last year we had a problem with the person that used to take care of him in the bus that brings him home. Every time the bus would come he would start crying, he said he didn't want to go to the school anymore in that bus and I was wondering, what is happening, what is going on now. Then, I spoke with the bus driver assistant and I asked her, 'What happened?' And she said to me, 'What happened is that he stands up on the bus and he cannot do that.' So I asked her, 'Do you know how to sign?' And she said, 'No.' And I said, 'Did you explain to him? The only thing that he is seeing is your body language. He can see and he can feel that you're angry, that you're upset and he paid a lot of attention to your body language and if you scream at him and you don't explain anything, the kid doesn't understand. If you have to tell him something, you have to tell me so I will explain to him or you can tell the other teachers in the school. If you cannot explain to him, someone has to do it. Someone has to tell him that when he's in the bus, he has to be seated and he has to have his safety belt on.'

The Role of Church and Faith

The father says a religious belief provides support.

We all have faith in God that is the important point, and faith helps us 100 percent, I think

[Mother speaking] We have this thing, we repeat to ourselves, 'God helps us, God will give us strength.' And that has happened, yes, God has given us strength.

Information and Feelings About Cochlear Implants

The parents first heard about cochlear implants from a family member who had seen a program on television. The information they received about the cochlear implant came mainly from physicians and focused mainly on the risks, minimizing possible benefits.

[Mother speaking] An article, a device that they put inside of them, what was its name? It is like a cochlear implant; we found out that they were doing that in [a city] so we came here to talk with the doctor, the pediatrician-I do not remember his name. He called and told me, 'you know, ma'am, there is an operation, let me find out more information' and at the time the operation was very popular. They told us the operation is going to be OK, but it was not the recipe [solution]. Then we talked to another doctor, and he told us, 'you know, ma'am, the child will be like this anyway, and this is a risky operation.'

I talked to the teachers and they said, 'The child is going to be exposed to a high-risk procedure and even though the surgery might be a success, he still will not be able to discriminate between sounds. The only thing, the only difference in the surgery is that instead of having his aids outside, he's going to have it inside now.' So we found no reason to expose him to that procedure.

We talked about this with his teacher and she told us that, ' I have had some implanted students and they remain the same. There is no change.'

The father added that some of the doctors also indicated that no change in M's audition was likely.

We talked with another doctor and he told us that they recommend the surgery only for people who don't have any residual hearing at all. For them, yes, it is very good. They can improve their hearing and at least they know that there are noises in the outside world, but for M, M can hear noises, like when a dog barks or there is a car, he can really hear that because he starts running right away from it. So we thought it was nonsense to put him through that [the surgery].

The parents chose not to pursue a cochlear implant. However, they indicated a willingness to reconsider.

[Mother speaking] According to the information we were given, we put on a scale the things that we could have after the operation and the things we could not have. That was the most important factor influencing our decision.

[Father speaking] To do such a thing, we would only need one more thing to convince us, which is reasonable, right? But, until now we have not seen anybody with that surgery… If I would have known someone who has it, I would go and ask him.

Family's Satisfaction

The parents expressed satisfaction with M's progress in school. They are active participants.

[Father speaking] We help with his homework. When they tell us that there is an activity, we are there. They only need to let us know where and when. We're always paying attention to everything they tell us. Communication is constant and continuous. We don't have any doubts about that.

Above all, the greatest satisfaction we have are the grades he brings home. It also makes us happy when we receive reports detailing all the different things he is doing fine. If there is a low grade, we know we have to help him, but we are on his side.

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Family 5

Description of the Family

The mother and father were present for the interview, which was conducted in Spanish. H is a 6-year-old boy with a severe hearing loss. He lives in California with his parents and a sibling. The mother is a homemaker and the father works in construction. The family moved to the United States from Mexico before H was born.

[Father speaking] Well, I came here when I was about 18 years old. I came here to work, to help out my family but then later I got married and well I thought that this was the best place to live.

[Mother speaking] … for a better future.

The family speaks Spanish in the home. The father said he speaks a little bit of English, but the mother does not.

Events and Emotions Surrounding the Diagnosis

The mother first suspected hearing loss when H was about 16 months of age and she and her sister noticed that H was not trying to speak. She took him to an ear, nose, and throat specialist in Mexico, who told them that H had a hearing loss.

Both parents said they felt very sad upon learning of H's hearing loss.

[Father speaking] Well, first it was very sad and they were in Mexico and I was here working and so I decided that it would be more beneficial for him to be in this country. He was born here so I thought you know, he could study here and go to school here because the person I knew in Mexico who was deaf, a lot of people ignored him and they didn't have respect for him. So I didn't want that for my son. So that's when I decided that he should come here so he could go to school here.

[Mother speaking] Well, I also felt very sad. Well, I also knew deaf people in Mexico and they don't know how to communicate, they don't know sign language, they don't have any language. They try to speak, but you can't understand them. So I thought being here, he would have a better future and everything would be closer to him and you know, if we stayed there, we wouldn't be able to get into the state he had to go to, to go to school, and really, economically, it would just be too difficult. So I decided that this was the place for him.

Language Differences at Diagnosis and in School

Because H was diagnosed in Mexico, the doctor spoke Spanish and there were no language barriers. However, the mother still felt that she didn't understand what she was told. In the United States, the audiologist spoke English and the mother had an interpreter. The mother felt the information was clear and she was able to communicate freely with the audiologist. In school, the teachers speak only English and have an interpreter. Written materials are provided in Spanish.

[Mother speaking] I was happy because I was able to understand everything.

Language differences have become less of a barrier as the mother has learned more sign language, which is the language she uses to communicate with the teachers.

Information Access and Support

The mother said that although the doctor spoke Spanish, she had difficulty understanding the information that he gave her.

Well, I tried to understand him, but I really didn't know anything about what happens when a child is born like this, with this type of problem, because I really never knew anybody who had that problem. But once I got here I learned more about it. And I went from one place to another and got more information, so here's where I've learned most of my information because I've seen and met many deaf people here… well, really, I was very surprised and I didn't ask any questions.

[Father speaking] He gave her a report that shows the scale of what type of hearing loss he has. It shows where a normal person can hear and then where a person starts to have hearing loss, at what different levels. So he was very low at the level of being able to hear. So then he recommended hearing aids, but we really didn't see any type of benefit in that. But my son did make different types of noises and sounds, so I thought in due time he would be able to speak. I thought maybe if they helped him a little bit he could.

[Mother speaking] I do think it was clear, but at that time, I just didn't understand it. Yes, because sometimes even if the information is clear you still can't understand the information ... after he gave me that information, I right away came back to this country and they gave me another evaluation here and that's the way everything started here ... the first thing the doctor told me was he sent me to go to the children's hospital to get another evaluation for my son. So the doctor in the hospital there has all the information on my son.… I felt good because he gave me a lot of confidence and I really felt that somebody was supporting me.

The father said his attitude toward the doctors changed over time.

Well, we felt that they were giving us suggestions, but later we started to feel and believe that they were telling us what we must do. Because as time went along, they told us that there was technology, advanced technology, that would allow my son to speak. There was some type of implant, but we rejected that. We decided to wait until my son could make the decision for himself and maybe wait for science to have more advancement. To wait and see if maybe later there would be something better…

Information From Deaf Adults and Other Parents

The parents have found it helpful to meet with other parents of deaf children and to talk to deaf adults.

[Father speaking about meeting with parents] We discuss how we feel and really about how we communicate with our children.

[Father speaking about meeting with deaf adults] We can discuss things with an adult and they can tell us what they feel and express their feelings better than a child can. You know they can tell us if they're happy the way they are, or tell us what it is that they feel, so then we think, 'Oh, maybe our son feels the same way or is also going through that.' You know, and we think our son isn't going to have any problems later.

Choosing a Communication Method

The parents immediately began learning sign language on the advice of the teachers.

[Mother speaking] They told us that we needed to learn sign language so that we would be able to communicate with him. For example, if he were to get sick, we wouldn't know what was wrong with him. So we've learned really basically what he's learned so if he's ever sick you know he could tell me what's wrong. If his ear hurts or 'my head hurts.' So I'm not just here wondering what's wrong with him ... I accepted it because I had to learn.

Language Preferences

The parents feel that it is most important that H learns sign language. Since they also have a hearing child at home, they speak in Spanish at the same time they are signing.

[Mother speaking] It's not important for him to speak in Spanish, but I would like him to be able to understand it maybe when he gets a little older. What's important for me is for him to learn sign language because that's who he is really going to be communicating around most of the time.

[Father speaking] I believe the best thing is for people to learn the language of their children so that the parents are able to interact and stay close to their children. Because I do believe that the children become distant when the parents don't know their language.

[Mother speaking] I think it's important, for example, if my husband and I are communicating that we use sign language so my son, H, knows what we're talking about. Because otherwise, he'll look at us and wonder what we're talking about, or what's going on.

The parents began sign classes, but recognize that it will be difficult to keep up with their son's sign language skills.

[Mother speaking] We started to go to the sign classes so we would advance at the same rate that he was advancing. Because I know that he's really going to advance to a greater level and we won't be able to surpass that level that he will reach. But we want to at least have some type of communication with him... we're going to try to do the best that we can.

School Choice, Personal Style, and Advocacy

A teacher from a school district in California helped the parents in their search for the right school. The parents visited five schools in three different cities in California. The mother said the schools offered different types of communication.

[Mother speaking] I did go to a school where they did try to speak, but it seemed that they were forcing the children too much to do something that they weren't able to do. And I didn't really like it there, so I decided that I wanted him to learn sign language and if later in the future he can speak, that's fine, or if not, you know I just accept him that way.

At first I felt that he was the only child who was like that, but after seeing so many children who were like that, I realized it wasn't only him, there were a lot of children like him. And I realized he will have somebody to communicate with, because he's not alone.

I liked it because they always used sign language. So that's what I liked about that school. And in the other schools I did not like them because they spoke to the children and sometimes they would use sign language, and sometimes they wouldn't use signs. So I decided for him, the best thing would be to have somebody that would always sign to him.

H has attended four schools. The parents chose only the preschool he attended after early intervention.

[Mother speaking] They really didn't allow us to choose a school. The only one we chose was the one in [a city in California]. So really, they've been transferring him to different schools.

Presently, H is in a hearing-impaired classroom within a mainstream school. The parents would like to send him to the school for the deaf.

[Father speaking] We've always liked for him to be able to interact with more children and there's a school here where all the children, all of them, they are deaf. We would like him to feel more comfortable. Because you know when there are hearing children, sometimes they say bad words or they make bad gestures and then our son learns them and we tell him that he can't do that because it's bad, but he doesn't understand why it's bad.

The Role of Church and Faith

Although the parents say they are religious, they do not feel that their religious beliefs have been helpful in making decisions.

[Mother speaking] Well, we really don't look for any type of help. So when we were in Mexico, we didn't go looking for help there and here as well, we really haven't looked for help. We're really waiting for my son, we're waiting to find a church that has sign language for him, so he can go to church.

Information and Feelings About Cochlear Implants

The parents received information about cochlear implantation from several sources, including a deaf adult, teachers, and medical professionals.

[Father speaking] We did meet some people who did have the implant done, and we spoke to teachers who are in charge of those children who did have the implants. And we spoke to a deaf adult and asked her if she were able to have the implant, if she would get it done, but she told us that she was happy in the way she was, she was just very happy and satisfied. So we thought about that, and we thought that maybe our son, you know, could be just as happy as he is. So we decided not to make any decisions for him.

...At the children's hospital was where they told us about it. There was an ear, nose, throat specialist there and he told us about it. He recommended the implant to us and he did tell us what risks there were and we just thought it was a very risky surgery, so we decided against it. Because we thought maybe later he may be in a worse situation. Because even now, even though he's deaf, he still has no type of pain or anything. But if we did go with the implant and if it did cause some type of paralysis of some kind, maybe hitting some type of nerve or something; so I think he would have some type of pain later or headaches, or something, I don't know. So we decided against it.

[Mother speaking] Well, we see that he's happy this way. He plays, he runs around. But I think that if he would have the implant then there would be some type of risks.

Teachers also dissuaded the parents from choosing cochlear implantation.

[Father speaking] Yes, well at the school he was at, there was a teacher there that we discussed this with. There was a boy there at the school who had an implant, so we asked his teacher what type of response did this child have with this cochlear implant and the teacher said he did make sounds, but he did not speak. So we decided that it wasn't as effective as they had originally told us. They had told us that it wasn't going to function the same with each child, so we decided not to do anything with that.

Family's Satisfaction

The parents express dissatisfaction in their ability to communicate with H, because they need to learn more sign language. They express a moderate degree of satisfaction with H's current school placement.

[Mother speaking] … Because the teacher he's with now, she's fine.

[Father speaking] … [However] we're not satisfied because he's in a class with children that can speak.

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Family 6

Description of the Family

The mother and the community facilitator for this project (who is deaf) were present for the interview, which was conducted in Spanish. P is a 4-year-old girl with a profound hearing loss. She lives in California with her mother and father, an aunt and uncle, and three cousins. The mother is a homemaker and the father works in a skilled trade. The aunt and uncle work in a restaurant. P was born in the United States. Her mother moved from Mexico 10 years ago with her parents, who moved for economic reasons. The mother said she speaks English with P, but Spanish with her husband.

Yes, [my English] isn't that great, but I am able to communicate, and I understand it very well.

Events and Emotions Surrounding the Diagnosis

Hearing loss was first suspected when P was about 6 months old. P's grandmother noticed that she was not reacting to loud noises. The parents took P to the pediatrician who told them she might have a hearing loss.

[Mother speaking] The pediatrician said that she might be deaf. After that came the other tests and everything.

P's hearing loss was confirmed when she was 7 or 8 months old.

The parents said learning about their child's hearing loss was difficult.

Well, at first it was very hard because you know, we come from a world where we are used to communicating using our words and our voice and we just weren't used to that kind of thing, and it's very hard because now we have to learn a whole different language to be able to communicate with her.

Language Differences at Diagnosis and in School

The doctor who delivered the diagnosis spoke Spanish, eliminating the need for an interpreter. The audiologist, however, provided information in English. Although interpreters were available, logistical problems limited their usefulness.

[Mother speaking] Actually, I don't think I've ever had an interpreter ... usually the first few times, it was because it was difficult waiting on the interpreter to arrive. We would have to wait one or two hours for the interpreter to get there and then sometimes they had to help other people who were there before us because the interpreter was busy. From this point on, a lot of things happened, so we finally decided that it was just easier for us to go on our own and with the English we knew, and it was not a perfect English but one we knew, that we could understand, we're able to communicate and it seems to be good enough. I would have really preferred that it would be in Spanish, but it's just so difficult, so difficult, more than anything to find somebody who speaks Spanish. When you go to the hospital there are just so many people and there's not enough interpreters.

The mother said she felt that she understood the information provided by the audiologist. To the extent that she did not understand what she was told, it is unclear whether language differences were the reason for misunderstanding or if unfamiliarity with deafness and the terminology used by professionals were more important factors.

Usually when I don't understand something, I ask them to repeat themselves or to try to find another way to explain it to me.... now that I look back, at that time, I thought I did have all the information and now several years have gone by and I realize that I didn't have a lot of information at that time. I have learned more now and at this time, I have more information about the hearing aids and the different kinds they have and there's just more information out there now.

Early intervention services were provided in the home. Using sign language provided a communication bridge for this family.

She had a person that spoke Spanish and English and also signed, and another person who spoke Spanish also knew sign language ... occasionally, only the one that spoke Spanish would come. And when the woman who only spoke English would come, then the other woman who spoke Spanish came along..

Information Access and Support

The parents felt that the information they received at diagnosis was clear, appropriate, and helpful.

[Mother speaking] [The doctor] was very clear in his explanation and I actually learned a lot because I never really knew anything about deafness and I learned that there is different kinds of hearing loss and I learned things about the ear that I never knew before, so I really think it was helpful ...after we saw the first doctor, we went and looked for a second opinion. Actually there has been about four or five different specialists who have seen P. We have looked for the answer to maybe the reason why she's deaf or exactly what the problem is with her hearing loss.

The audiologist who performed the hearing test was also helpful and, in the mother's words, not pushy.

The first thing the [audiologist] told us was that P had to be put in a school and that I also had to start taking some classes ... she gave us the phone number and address of the school she had to go to and we also started the paperwork on getting my daughter's hearing aids ... really, it was more of a suggestion and she didn't, she wasn't pushy, she didn't force us to go there. She just gave us the name of the school that was closest to us. So really, it was just a suggestion that she was giving us ... I thought she was very helpful, and I also did my own research. I also went to the school to visit and see what that was about and I did a lot of other things.

Information From Deaf Adults and Other Parents

The mother has become friends with other parents of children who are deaf, and has found that helpful for sharing information about resources, services, activities, and other things. In addition, in the school P currently attends, the mother has met many deaf adults, which she also feels has been helpful.

The biggest thing that has helped me is to realize that [deaf adults] are just like us, that they have the same type of opportunities that we do.

Choosing a Communication Method

The early intervention teachers advised the mother about communicating with P.

Well, they [the early intervention teachers] told me that I would need to speak to her and that I would need to speak to her and sign at the same time and that it would probably be best for me to speak English to her because it would be easier for her. They said I could speak to her in Spanish, but that it would probably be easier for her to communicate in English . ... I knew I had to go and learn sign language. So we have been going to take some classes and up until now, we're still taking the classes and learning day by day.

Language Preferences

The mother primarily communicates with P through spoken English and sign language.

Sometimes it's English, sometimes it's Spanish. It's really whatever comes to mind first. Sometimes I don't even realize it and I'm already speaking to her in English, and then there's other times when I don't realize it, and I'm speaking to her in Spanish. But, for the most part it's usually in English.

I think it's important for her to understand and speak English. Well, I think it really doesn't make much of a difference to me whether she chooses to use sign language or to speak in order for her to communicate ... I think it's important for her to learn English because of the country we're in now ... I actually hope that she's able to communicate with everybody using all three, English, Spanish, and sign language.

I do believe that [speaking Spanish to her] has affected her negatively, because I think it has maybe held her back a little bit. I think she's supposed to know more signs than she does already. I hope she learns eventually, but for right now what is really important for me is for her to learn sign language and understand it.

School Choice, Personal Style, and Advocacy

The mother visited different schools with various educational approaches.

The audiologists gave us the address of the school that would best fit her educational needs. So we went to the school. They started to speak to us and they saw P. That was the way it started. Going there ... then we started to look for a school that was closer to us or that was better.

As I did start visiting different schools, I started to notice that at some schools they would only speak to the children, other schools they would speak and sign to the children and there were yet other schools that they only sign to the children so I did start to notice these differences, but nobody ever gave me complete information about that.

I have done some research about other schools to see if there are other options for me. I would like a school that offers maybe speech therapy for P. There is some speech therapy there in the school, but it doesn't seem to be enough, so we're looking to see where we could get the speech therapy that we need for P. We're just looking into other resources right now. We're looking to see if maybe she could get the speech therapy maybe in the hospital or somewhere else because I would really like for her to stay in that school, the school she's in now.

... I was never given an option. They would always tell me what they offered at that school. Basically, they have told me, 'here we have oral and signs,' and in the other one, they only had oral communication.

P started to receive early intervention services at about one year of age. P remained in this program for only 5 or 6 months. Because the school was far from home, she was moved to a school in another city.

Actually, I didn't choose that school. Well, really the reason was that that was the only school available and one of the only schools that did sign and speak. There was another school in [another city], but that was just an oral school. I wanted to be sure that P was exposed to both speech and signing. It always worried me that maybe P wouldn't be able to use her voice, so I wanted to be sure that she did have sign language available to her.

...I wasn't given the option. I did some research about other schools better or closer, but I could not find them. Only this one and the oral one. After that, we came here, and the school she is in now was the one that was recommended to us. The doctor we have now has also given us two other options for schools, but those schools seem to be too far away from us.

The doctor that we're seeing now doesn't seem to agree with the fact that P is going to the school in [a city]. She feels that it is more important for P to go to a school where they offer speech as well as sign language. She feels that it's the best thing for P.

The Role of Church and Faith

The mother said she was not influenced in any way by the church or religious beliefs.

Information and Feelings About Cochlear Implants

The parents received information about cochlear implants from two doctors, one of whom spoke Spanish and gave the family a lot of information, including books and Internet resources. The parents were told that the implant might improve P's hearing. Ultimately the parents chose not to get an implant.

Well, there were many reasons. First of all, the biggest reason was because they didn't promise us that P could speak or hear with it. The second reason was because the surgery was a little risky, and the other reasons were that they told us there were many things she could no longer do once she got the implant, and I thought it would probably just be best for her to grow up the way she is now, not having any restrictions.

Family's Satisfaction

The mother feels that she and other members of the family need to learn more sign language. She has been satisfied with her ability to obtain information to make decisions and is happy with the school her daughter attends.

Her principal concern at this time is with regard to education.

This is exactly what we want, for her to have the best education possible. Really my biggest concern with her is her school achievement, we want for her to have the best possible. I hope that academically we've made the right choice and that we've chosen the best school, you know, the school that she's at now.

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Family 7

Description of the Family

The interview was with the mother and was conducted in Spanish. B is a 10-year-old boy with a profound hearing loss. He lives in Pennsylvania with his parents and three siblings. The mother is a homemaker and the father is disabled. The family speaks Spanish at home, although the younger children also speak English. The family moved from Puerto Rico two years and five months prior to the interview because of B's hearing loss.

We came to the United States because of the child, because of his disability. He is deaf. For a while I was thinking about coming here because they say that, in the caring for handicapped children, there is a lot of help here and the doctors help a lot where my country is a little behind. Over there the child was in a school where there were a lot of children with different disabilities. So I thought that a lot of children with a lot of disabilities, it couldn't work; it's too limited. They should be, each child should be with children with the same disability because that way the professionals can get to them better.

Events and Emotions Surrounding the Diagnosis

The mother learned before B was born that there was an Rh incompatibility and that the baby was likely to have "problems." At birth, he was found to be deaf and have other medical problems.

The mother's feelings about her child's hearing loss were overshadowed by concerns about his overall health and well being and his other disabilities.

It wasn't easy ... I felt sad. I was crying a lot. I was very worried, if his operation was going to leave him crippled because as they said, the diagnosis of the child was that he was going to stay crippled in the bed and that he wasn't going to be able to do anything. So when they told me that, I got so worried that he would come and that he would stay in the bed and all. Since a condition like that is very difficult.

Language Differences at Diagnosis and in School

The diagnosis of B's problems at birth took place in Puerto Rico, with a doctor who spoke Spanish.

[Mother speaking] Yes, I understood everything that the doctor told me and if there was something I didn't understand, I would ask him again, he was very nice and he would respond to me, and tell me, and explain to me again every procedure, everything that he was telling me that he had to do.

The audiologist in Puerto Rico also spoke Spanish. In Pennsylvania, the doctor who treats B speaks English and uses an interpreter. Sometimes, a friend who speaks both languages also acts as an interpreter.

Sometimes it is not good. It is not exactly what I would like to explain, to the doctor, because sometimes the interpreter cannot explain to the doctor the same way I would.

The audiologist in Pennsylvania also speaks only English. The mother takes a friend with her to act as an interpreter at those appointments.

She knows everything that I have been through and all. So then she helped me a lot to talk to them.

In the Puerto Rico schools, there were no language problems. However, upon coming to the United States, the mother found it somewhat difficult to interact with the teachers.

In the beginning when I came here, it wasn't easy for me, since I was coming into another language. At school, there is not that many people that speak Spanish, the teachers are Americans, all that my son has, so then we use an interpreter. I am taking sign classes, and I think that for me it has not been easy because it is a translation from English to Spanish. It hasn't been easy for me.

Some of the teachers have tried speaking to her in Spanish.

… but it is very difficult. It is like me speaking to them in English.

Papers that come home from school are generally translated into Spanish.

I can understand what they are into. Every day they are telling me what they do in the classroom in Spanish. They have a person that translates what they do.

Despite the language differences, the mother did not identify any significant barriers to B's education.

It could be a lot easier for me to communicate with them and all of that, but since they already have an interpreter, there hasn't been that much that I could say that we have had problems with.

Information Access and Support

The therapist advised the family to move to the United States for better services.

[Mother speaking] The therapist that was seeing him told me, 'Think about it in the near future. Get out of Puerto Rico to the United States because there he is going to find a better mechanism of life. The schools are going to be better. The doctors are better prepared, more able than here.'

Choosing a Communication Method

The teachers at the school for the deaf in the United States told the mother she needed to learn sign language in order to communicate with her son. The mother said she is learning a little and said she also speaks to him in Spanish and he reads her lips.

Language Preferences

The mother feels it is important for B to learn sign language, Spanish, and English.

I want him to be using his sign language since that is his language, but also he's being taught how to talk to hearing people.

School Choice, Personal Style, and Advocacy

The mother was told that B had a right to receive educational services (in Puerto Rico) at 2 years of age. He started school between the ages of 2 and 2 ½. It was first recommended that B receive therapy individually, but the mother wanted him placed in a classroom with other children, and that is ultimately what happened. The mother visited two schools; one was a day school for children who are deaf and the other was for deaf and blind children. She chose the school for the deaf.

I liked it since the first day I visited it. I liked what I saw them doing in the classroom. So that's what I like, and I thought that it would be good for me because I saw that the teacher knew how to get through to the children and his mechanism of work was excellent. The teacher was excellent and professional in helping children that have this problem.

Upon moving to Pennsylvania, they chose a school based on the doctor's recommendation.

That school, I choose it because the doctor told me that it was the very school for him and I went to see it too, and because all the children have the same condition as he does, and they are professionals that work very well, very well with the children, and that was what I was looking for for him.… They have offered me everything and to see if I want him to participate or not and usually when they have new programs for him, I go to the school and see what they do and everything that they're going to do, they inform me.

The Role of Church and Faith

The mother feels that her belief in God has been influential.

I have always belonged to a Christian evangelic religion since I was little, and that that has been a big help too.… The church helped me. They told me that there was nothing impossible that could not be done with God's help, and that's the way it has been and thanks to God's help, the child has improved a lot, and I have seen how he is better now.

Information and Feelings About Cochlear Implants

The mother said she has heard about cochlear implants from women in [her son's] school, although it is not clear if these people are teachers or mothers. She has not met anyone with an implant and has not made a decision about an implant for her son.

They said that it was only for people that have profound loss of hearing or bilateral and that it is good, and that in other children it gives good results.… In reality, I have not thought about whether that operation would be a benefit for him.

Family's Satisfaction

The mother feels satisfied with the school and with her choice to come to the United States. She expressed dissatisfaction with her ability to communicate with her son through sign language, recognizing that she needs more classes.

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Family 8

Description of the Family

The mother was present for the interview, which was conducted in English. J is a 10-year-old boy with a profound hearing loss. He lives in Pennsylvania with his mother and three siblings. The mother works in a factory and the father works in construction. The mother was born in the United States, and J's father was born in Puerto Rico. The family speaks English in the home. The mother said she speaks, but does not read, Spanish.

Events and Emotions Surrounding the Diagnosis

The mother suspected a hearing loss when J was one because he, wasn't like my other children. When he was 6 months old, J was sick with a high fever.

That's not normal for a 6-month-old child. I knew something was not right and that's when I started taking him to the doctors, trying to find out if that fever had caused anything else. And that's how I found out that he was, you know, will not hear. So they started testing him ... they kept testing and testing, that is when they told me that he was, you know, completely deaf.

The mother reports feeling sad when she learned about J's hearing loss, and also upset that the doctors had not paid closer attention after he had the high fever.

At first I was sad, but I mean that's my son, I love him. I mean it was harder more for him than it was for me, and all the signs I had to learn, I learned from him because he taught me, but I mean you learn to deal with it ... [I was thinking] that he wouldn't be able to hear me say I love him because at the time I didn't know sign language, so I didn't think he would ever hear me say, 'I love you' or you know, go, you know, dance and party and, 'I want you to play with me,' you know stuff like that where music is always involved when it comes to kids. And the birds chirping, because he loves the park. He's a park freak. He loves it, and I mean, I always figured he wasn't going to be able to hear certain things that I wanted him to hear. So I was sad for him, not so much for myself because no matter what, he's my son, I will always love him, but I was sad for him because I would think that he was going to miss out on...so it made me feel sad.

...I feel like it should have never happened. The instant that he had a fever of 110, they should have kept on checking because I mean, a fever of 110, I mean that causes something, especially on a 6-month-old baby, and they just kept dismissing it as though it was just ear infections, and I feel as though they should have checked a little more deeper into it.

Language Differences at Diagnosis and in School

Because the mother's primary language is English, she reports no obstacles caused by language differences. However, the father does not speak English and has learned very little sign language.

[Mother speaking] He wanted to be involved somehow, but just didn't understand quite where he was going, so I was translating for him.

I mean [the father] will say 'I love you' in sign language, 'play,' or 'park,' but not too much. No... and sometimes J looks at him like, 'Huh?,' like, 'What?,' but he won't take classes. He refuses to take classes … After all these years, I think it's still difficult on him. I mean that's his first born [child].

Information Access and Support

Following the diagnosis, the professionals gave the mother about a week to let the information sink in.

They let me think things through and they just kept calling me, making sure that I got help for him as soon as possible because he needed it and he was very young. So I woke up and I'm like, all right this is what I've got to do for him and I called them up and I went to their office and they scheduled a lot of appointments, but I mean he's doing great now.

They told me that I would have to find a special school for him and so he wouldn't be like regular children, but that he was going to be healthy and what not. So they started pointing out schools for me and I started interviewing a few schools and I picked a nice, a good school for him and it was, I love that school, because they helped him a lot since he was little ...

I felt as though I needed to know more, so I went to the library and I started to read up on things and started getting some more pamphlets and checking up on what it was I, what [it] was [that] I had to deal with, you know, for the future. So I read up on that and I started to go and apply for classes and things like that. I wanted to prepare myself, but I still couldn't get the hang of it.

The mother was also given pamphlets, referred for family counseling, and set up with early intervention services.

For a whole year they [early intervention specialists] came to my home and I talked it out and it helped me a lot. It really did. I was very young. I was only about 19 years old. So I was really young, I didn't know exactly what I was getting myself into, but I mean they explained as much as they could ... they did give me a lot of information. It was like too much to take on, but it made me go out there and say well this, they've given me all this information, I need to read up on it, he's my son, he's going to be with me always. So I started to read and I started to focus on what needed to be done. So I think it was great-all the information they gave me.

A counselor at a school for the deaf was also helpful.

Information From Deaf Adults and Other Parents

The mother says meeting other parents of deaf children and deaf adults has better prepared her for life with a deaf child.

In the beginning, because I wanted to know how it feels to be with other deaf parents. ...with all that they were talking about and what they were going through and me listening to all the things that they had to say, it helped me to understand what I was going to go through, getting ready for.

I know quite a few [deaf adults] and I visited their church and I've gone on family picnics and things like that, which they do a lot at the school and it's great. I mean, it's nice. ...because I got to understand a lot more of what was going to happen to me. I got ready, in other words. They, I watched them, how they were working with their kids and what they had to go through with their kids and I'm like, well that's going to happen to me.

Language Preferences

The mother feels that J communicates well with people whether they sign or not. She said she did not feel that one language, English, Spanish, or sign language, was more important than another.

School Choice, Personal Style, and Advocacy

A meeting with the doctor and a school representative guided the mother in choosing a school.

…They gave me a few schools to pick out for him. That's mainly why I went for [a school for the deaf] because they really got involved with my case and they didn't have to, and they helped me a lot. I mean there was nothing they would not do for my son. Until this day, they still, you know, if there's a problem or if he gets into any trouble, they're there, they're on it, and they don't wait. So they help, they've helped me a lot. I give them a lot of credit.

The mother was also told about another school that J could attend, but rejected it without visiting it.

I heard that when a child signs there, they tap him on the hand with a ruler and I mean they weren't allowed to sign, everything was vocally, but I didn't want, I didn't want my son to be put through any pain, and he already at that age was already teaching me sign. ..and since [a school for the deaf] was already there for me, and they had extended their arm out for me. They didn't have to. I mean, they had just led me, they didn't have to go, through all the things that I went through, they didn't have to be there for me and they were.

The Role of Church and Faith

Religion has been a source of some support for the mother.

I prayed a lot. I prayed a lot. I was hoping that the doctors were trying something and say, 'Look, we were wrong. He's still going to be able to hear,' or 'there is something that we can just implant in his ear, don't worry, he's going to be fine,' but I had to accept it. It took me awhile, but I had to accept that my son was deaf. I had no choice.

Information and Feelings About Cochlear Implants

The mother has gotten little information about the possibility of cochlear implants for J.

As a matter of fact, last year during the summer, I went to take J to a new doctor in [a city] ... They asked me, would I like for my son to have that surgery and that it was very rare, you know, it's new. And I told them that I would think about it. They told me that they would give me a call again, but I never heard from them again.

I was hopeful, but I didn't want to put my son through all that pain. I didn't know exactly what he had to go through in order to get those implants in his ear. So I didn't want to put him through any suffering.

The mother said she has seen a few children at J's school with implants, but doesn't know how well they work.

I just don't want to put him through any pain. I mean he's a healthy boy. He's, I mean, he's very healthy, and when I mean healthy, I mean he's big, he's chunky, runs around, he plays. He does everything that a normal kid would do, it's just that he can't hear and I don't want to put him through any pain that he doesn't need to be in. I mean I would love, I would love to be able to hear him say, 'Mom, I love you' without him having to sign it to me, but I don't want to put him through any suffering. I don't want to.

Family's Satisfaction

The mother is very satisfied with the school her son attends. She feels that she and her other children communicate well with J, although other family members, such as her sisters, do not.

I felt sad because they don't know what they are missing.

She is also concerned about the difficulty J is having in learning to read, and is trying to find answers.

I don't want to dismiss it and have it be something that comes up later on, like what happened when he was deaf, when I found out that he was deaf. I don't want to dismiss it and just, you know, I don't want to. When it comes to J, I made a mistake once, keep dismissing it, oh yes, ear infection, ear infection. It could have been resolved then and he probably wouldn't have been deaf.... But I dismissed it and oh, just let it be, oh it was just ear infections, and now I sit down and I wonder, what if, what if I could have taken more action then.

The mother also said she feels that now that her son is 10 years old, he should be involved in decision making.

I've made a lot of decisions for him, but lately I've had him choose what he wants to do too, because it's important, now that he's 10 years old, that he has to also make decisions. So he's made quite a few decisions for himself too.

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Acknowledgments

The contents of this report were developed under a cooperative agreement with Gallaudet University. However, the contents herein do not represent the policy of Gallaudet University, and endorsement by Gallaudet or the U.S. Department of Education should not be assumed.

The following individuals contributed to the research effort as community facilitators, interviewers, and translators: Rocio Aguirre, Ada Brainsky, Maria Campos, Donald and Marilú Couch, Kathy DiPasquale, Madlyn Garcia, M.D., Eneida Gomez, M.D., Leo Hidalgo, Adela Llumpo, Marta Ordaz, Minnie Ponce de Leon, Linda I. Rosa-Lugo, Ed.D., Aracely Rosales, Jesse Sandoval-Barrett, M.D., Hugh Sommers, Nellie Torres, and Leticia Tumax.

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References

Alvirez, D., & Bean, F.D. (1976). The Mexican-American family. In C.H. Mindel and R. W. Haberstein (Eds.), Ethnic families in America (pp. 271-291). New York: Elsevier.

Arnold, B.R. (Ed.). (1987). Disability, rehabilitation and the Mexican-American. Edinburg, TX: Pan American University.

Becerra, R.M., & Zambrana, R.E. (1985). Methodological approaches to research on Hispanics. Social Work Research and Abstracts, 21(2), 42-49.

Bennett, A.T. (1989). Hispanic families and children in the special education intake process. New York: The Lexington Center.

Charles, C., Gafni, A., & Whelan, T. (1997). Shared Decision-Making in the Medical Encounter: What Does it Mean? (or It Takes at Least Two to Tango). Soc Sci Med 44, 5:681-692.

Cohen, O., Fischgrund, J., & Redding, R. (1990). Deaf children from ethnic, linguistic and racial minority backgrounds: An overview. American Annals of the Deaf, 135(2), 67-73.

Delgado, G.L. (1984). Hearing-impaired children from non-native-language homes. In The Hispanic Deaf: Issues and Challenges for Bilingual Special Education. Washington, DC: Gallaudet College Press.

Janis, I.L., & Mann, L. (1977). Decision-making: A psychological analysis of conflict, choice, and commitment. New York: Free Press.

Luterman, D. (1987). Deafness in the Family. Boston: College-Hill Press.

Meadow-Orlans, K., Mertens, D., Sass-Lehrer, M., & Scott-Olson, K. (1997). Support Services for Parents of Children Who Are Deaf or Hard of Hearing. Presentation at Convention of the American Instructors of the Deaf (CAID)/Conference of Educational Administrators of Schools and Programs for the Deaf (CEASD) meeting: Pages of the Past…Chapters of the Future, Hartford, CT.

Miles, M.B., & Huberman, A.M. (1994). Qualitative Data Analysis (2nd ed.). Thousand Oaks, CA: Sage Publications.

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Rodriguez, O., & Santiviago, M. (1991). Hispanic deaf adolescents: A multicultural minority. The Volta Review, 93(5), 89-97.

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Stein, R.C. (1983). Hispanic parents' perspectives and participation in their children's special education program: Comparisons by program and race. Learning Disability Quarterly, 6, 432-439.

Steinberg, A. (1991). Issues in providing mental health services to hearing-impaired persons. Hospital and Community Psychiatry, 42(4), 380-389.

Steinberg, A., Davila, J., Collazo, J., Loew, R.C., & Fischgrund, J.E. (1997). "A Little Sign and a Lot of Love ...": Attitudes, perceptions, and beliefs of Hispanic families with Deaf children. Qualitative Health Research, 7(2), 202-222.

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On-line Resources in Spanish

If you have a resource to add to this list or feedback about these links, please contact us.

Asociación de Artes y Señas: http://www.adas.org.ar/

Aztlan: http://www.deafvision.net/aztlan/

Department of Education: http://www.ed.gov/spanishresources.jsp

The Discover IDEA video y Assessment Accommodations video (con subtitulado en Español):
http://www.ideapractices.org/resources/detail.php?id=2048

Educación Especial Evaluacion: http://www.fape.org/newsline/spanish/evaluacion.html

Entendiendo el Proceso de Educación Especial Una Vista Panorámica para los Padres: http://www.fape.org/newsline/spanish/entendiendo.html

La Federación de Personas Sordas de la Comunidad Valenciana (FESORD CV): http://www.fesord.org/

GENYSI: http://paidos.rediris.es/genysi/

Inter-American Institute on Disability: http://www.iidisability.org/

Listen-Up Web: http://www.listen-up.org/htm/spanish.htm

The National Information Clearinghouse On Children Who Are Deaf-Blind: http://www.tr.wou.edu/dblink/products.htm

News Digest en Espanol: http://www.nichcy.org/pubs/spanish/nd21sp.htm
http://www.nichcy.org/pubs/newsdig/nd21.htm (English)

NCBE: http://www.ncbe.gwu.edu/library/espanol.htm

Otras Publicaciones: http://www.nichcy.org/pubs/spanish/spidea.asp
http://www.nichcy.org/pubs/otherpub/lg1.htm (English)

Las Preguntas Que Hacen Los Padres Sobre La Escuela: http://www.ed.gov/Family/agbts/Preguntas/

Puntos Básicos para los Padres: La Evaluación de Su Niño: http://www.nichcy.org/pubs/spanish/bp1stxt.htm
http://www.nichcy.org/basicpar.asp (English)

Sordito, Cochlear Implant Centers in Monterrey, Nuevo Leon, Mexico: http://www.sordito.com

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Related Resources (in English)

If you have a resource to add to this list or feedback about these links, please contact us.

Bilingual Research Journal: http://brj.asu.edu/.

Connections to Success, Bilingual Special Education Resources: http://www.cait.org/cts/resources/biling_sped.html

Gerner de Garcia, B.A. (Summer/Fall, 1995). ESL applications for Hispanic Deaf Students. Bilingual Research Journal, 19(3), 453-467. Available: http://www.ncela.gwu.edu/miscpubs/nabe/brj/v19/19_34_gerner.htm.

Lamar University. (2001, December 15). Rodriguez becomes nation's first Hispanic deaf woman to earn doctorate in deaf education. Available: http://www.lamar.edu/news/story.asp?ID=251.

Lists of print resources:
University of Arkansas Rehabilitation Research and Training Center for Persons who are Deaf or Hard of Hearing: http://www.uark.edu/depts/rehabres/mchll.html; Laurent Clerc National Deaf Education Center's Info to Go, Resources for Hispanic Deaf and Hard of Hearing Populations: http://clerccenter2.gallaudet.edu/InfoToGo/hispanic.html; Laurent Clerc National Deaf Education Center's Info to Go, Selected Readings and Resources on Mulitcultural Issues and Deaf Students: http://clerccenter2.gallaudet.edu/InfoToGo/409.html; and The National Multicultural Interpreter Project: http://www.epcc.edu/Community/NMIP/hispanic.html.

Sass-Lehrer, M., Gerner de Garcia, B. A., & Rovins, M. (1997) Creating a Multicultural School Climate for Deaf Children and Their Families. Sharing Ideas. Available: http://clerccenter2.gallaudet.edu/Products/Sharing-Ideas/creating/.

Smith, M. (Summer, 1994). Enhancing Educational Opportunities For Hispanic Students Who Are Deaf. New York State Association for Bilingual Education, 9, 7-13. Available: http://www.ncela.gwu.edu/miscpubs/nysabe/vol9/deaf.htm.

Torres-Burgo, N., Reyes-Wasson, P., & Brusca-Vega, R. (Fall, 1999) Perceptions and Needs of Hispanic and Non-Hispanic Parents of Children Receiving Learning Disabilities Services. Bilingual Research Journal, 23(4). Available: http://brj.asu.edu/v234/articles/ar4.html.