July 08, 2010

Your Baby Is Deaf, What Should You Do?

I understand why sign language advocates push for families to learn and use sign language with their deaf and hard of hearing child. Having a language is the foundation to learning, well, to everything. We all need language to be successful and happy. The way we get language is through constant exposure to fluent language. Deaf and hard of hearing children usually lack constant and consistent exposure to spoken language. Compared to hearing children, they will have a harder time learning spoken language aurally and orally. Not that it can't be done. This is where sign language, such as ASL, can help provide constant and consistent access to fluent language models.

Now, the two major concerns I have about choosing sign language as a main communication modality (with hearing families) are the availability of good language models and commitment of parents or caregivers to learn and use an entirely new language consistently. The deaf or hard of hearing child will be learning language as his or her family learns a new language. Language will be choppy and inconsistent at first. It would be ideal if the family knew a deaf native signer, because then they can provide a good language model for their child as they work on improving their signing skills.

But, for the single mom, the poor family of 8 or so children who live in a rural area, the dad struggling to learn English or another new spoken language as he adjusts to living in a new country, the parents struggling to keep up with the demands of their jobs, and even the average family dealing with everyday life, it will not be so easy for them to learn a new language and be good language models for their young child. Not everyone is so lucky to have the time and resources to commit full-time to learning a new language while dealing with other ways to help their deaf or hard of hearing child, (choosing schools, hearing aids, whether or not to consider a cochlear implant, how to deal with another existing disability, etc.) and while dealing with everyday life.

The same can be said for aural/oral methods or if one were to choose other ways of providing access to fluent language. Not everyone can afford to send their child to an AV therapist or a good private oral school for the deaf. Families have to be committed to working with their child on learning spoken language and to be more aware of ways to expose their child to spoken language through auditory and oral methods. Again, not everyone has the time, money, or resources to give their child the best environment and models for learning language.

I see this with the families I work with. It is a daunting task to have to swim through enormous amounts of information about ways of helping deaf and hard of hearing children. It does not surprise me when I present the idea of learning ASL to some families that they look at me as if they want to cry. In addition, families will have to choose very soon how they wish to raise their deaf or hard of hearing child (for example, it is not recommended to wait until they are 5 or so to implant them). This has got to be frustrating. I can't even imagine!

It is not so simple. It is not so black and white.

It is very important that families be educated about sign language and all communication options and to have more knowledge of and access to other deaf and hard of hearing individuals and professionals who strictly deal with language learning development of deaf and hard of hearing children. Of course these professionals must have an in depth understanding of all communication modalities, Deaf culture, and sign language. In addition, they must not be biased. But, these types of professionals are extremely rare in many areas of the United States (at least qualified ones).

If I was a hearing parent with absolutely no knowledge of deaf and hard of hearing people and was told that my baby is profoundly deaf, I don't think I would know what to do.

Ay, I am getting a headache just thinking about it!

(e

19 comments:

  1. Thanks for the excellent post. A lot of stuff to think about here.
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  2. The auditory-oral schools discourage the use of ASL. So add that to the mix. We wanted to learn ASL for the times when my daughter can't wear her aids. We've not had the time to commit to learning it. We have a meeting on Friday with a cued speech instructor. Perhaps that will help us understand each other in the swimming pool.
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  3. It always raises a smile when you can read people talking about language and hearing loss as two different things. The amount of useful hearing ANYONE has, child or adult, is a major, but not sole determining factor on how they will effectively communicate.

    Just because you are deaf does not mean sign may be the best option for you, or orals, loss degree and ability dictate it, always has, if a deaf child is taught ASL from day one and is e.g. hopeless at that, then what ? who do we blame then ?

    I know of no school in the UK that teaches BSL from day one to leaving school. It's never been tried. A signing education hasn't been tried has it in that criteria ? Has it in America ? Total immersion in an ASL setting from day one ?
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  4. So maybe what you want is to join those holding out for a bill that not only points to the current paltry resources for parents, but actually starts beefing up the necessary resources (training and hiring itinerate Deaf Mentors, for example?).

    Services now need to be able to start when the 2nd newborn screening test confirms the 1st, which is now expected to REGULARLY become before the child is 2 months old.

    Language learning now CAN start that early... Do we really want to just continue the existing system of shuffling families around various medical specialties as though the main concern was just the "hearing health" of the child?

    AB 2072 needs to point the way to BETTER services for families, not just point parents into mess that is the already-known-failing existing system even sooner, without offering real resources for the things we can SEE they will need, but that the 6/9 revision of AB 2072 cannot offer.

    Don't settle for half a bill! Make AB 2072 provide REAL help so that parents HAVE something to CHOOSE.

    Parent groups are already getting together across the country, arranging play dates for deaf and hoh kids of similar ages and interests... Make a clearinghouse for such folks, and get even the rural kids VideoPhone ASL models...

    I think you are on the right track. We just need to adjust to the idea that services are needed for 2 month-olds whose ultimate hearing/speech/learning abilities are not REALLY going to be known for about a year, but we need to start teaching them language NOW, in the very FIRST YEAR, even with this large unknown in outcome.

    - Linda
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  5. "Of course these professionals must have an in depth understanding of all communication modalities, Deaf culture, and sign language. In addition, they must not be biased. But, these types of professionals are extremely rare in many areas of the United States (at least qualified ones)."

    That statement means so much, yet so few understand its importance. Thanks for addressing the need for impartial advocates and professionals. Far too many just push "what they know", and never mention the options outside their personal comfort zone. It's hard for families to decide. It's hard to know your child's learning style when they aren't even old enough to crawl. Having a 1st language model in the home is truly an important component to language learning.

    That was why as hearing parents of child with moderate to severe hearing loss we choose Cued Speech as our language modality. For us it worked wonders. My son's first language is English, the same as my first language. In High School, he's been able to take ASL courses and can communicate with ease with all his friends. He doesn't have to choose his friends based on their communication needs, he is able to move easily between them.

    As a family, it was important for us to be able to communicate in a language in which we were all comfortable. Doing so made sharing our family values and beliefs a natural evolution.

    We were lucky to have professionals who did explain all the options available to us and who helped us to choose an option which worked for our family and which has proven to be extremely successsful for our son.

    There are many options out there, but I hope more will consider using Cued Speech in the home and the school environment. I hope more professionals will be unbiased and looks at the research and published literature rather than dismiss Cued Speech as not Deaf culture. Culture of the home is important too and the two can be blended.
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  6. I think my biggest frustration as a DHH teacher is that parents are told that they must CHOOSE between different methods. Why?? Why can't we provide ALL opportunities? If a child can benefit from auditory information, give it to them! If a child can benefit from a visual language, give it to them! Why would we withhold anything from them?
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  7. Key Point: Signing isn't for everyone but if you do know ASL it can work to your advantage just like any other language learned. To certain people it may or not be needed, or may take too much time and effort for ones liking. Whether its signing, oral sessions, lipreading, etc... I like the idea of giving our deaf children CHOICES by teaching them and giving them the tools to expand their abilities if possible. You can teach them and they can decide later what's more comfortable for them. I didn't get to learn ASL, but I'm content with the fact that I didn't because I'm taking advantage of that opportunity to do so now. Everybody's different. So I agree with the last post... whatever benefits the child -- do it. Why choose?
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  8. Anonymous says:
    > Why would we withhold anything from them?

    I keep seeing proponents claiming a large "ASL-only" contingent that I don't see. What I see is "ASL First" which is simply a result of TRYING to do everything all at the same time with a kid who has enough of a hearing loss that the 2nd screening has confirmed the 1st one.

    Anybody who tells you what that child's augmented residual hearing ability is going to be at 1 year is GUESSING!

    But a hearing child is already picking up language. Hearing children exposed to both ASL and English language models will pick up ASL first. By the time the child has been carted around to enough audiologists and ENTs that there's some idea of how much hearing the kid has, that same child could already have language with ASL at a hearing level.

    Cuing can be a choice for a moderate loss, but I don't see the kids who twice fail the newborn screening as falling into that category often enough that I would be relying on cuing alone with the kids age 2 mo - 1 year at least.

    Ultimately, on average, you speak as well as you hear. You think as well as you communicate. You communicate via LANGUAGE, and the 2-month-old brain needs its language fix by any and all means available.

    The 2nd argument I'm seeing is that it can't cost the state anything, so we can't DO anything but point to existing services.

    See: http://www.nad.org/blogs/jeannette-johnson/educational-policy-deaf-children-commission

    ...where Jeannette Johnson (Deaf Pundit) reports on Barbara Raimondo's recent NAD talk:

    "After that section, she shared with us about how the government plans to reform the educational system, so all children, especially marginalized populations like us deaf, will get more funding and support to ensure our future generations succeed and thrive. 4 billion dollars in grants through the American Recovery and Reinvestment Act is a huge part of this plan, and it’s exciting for me to see some real changes finally happening for our community!"

    --------

    It need not cost the State of California to improve Early Start services to include more and better-trained service providers. Perhaps we could even find ways to assist them in pursuing further training in the effort to fill the real, but until-now-severely-underfunded need for deaf educators of ALL KINDS.

    I don't expect that balance will be achieved by trying to fit the whole juggling act into individual providers.

    - Linda
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  9. Thanks to you all for your comments! I appreciate hearing everyone's views on this.

    I agree with some readers, the lack of qualified professionals in D/HH areas needs to be addressed. Maybe if they paid us a little better, we would see more people signing up for the challenge.

    (e
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  10. MM said: "I know of no school in the UK that teaches BSL from day one to leaving school. It's never been tried. A signing education hasn't been tried has it in that criteria ? Has it in America ? Total immersion in an ASL setting from day one ?"

    I only know of some Bi-Bi programs in parts of the U.S. where children receive educational instruction in both English and ASL, similar to how other bi-lingual schools run. They are rare. There are still some residential schools for the deaf where ASL is used at all times; NOT the ones where they have hearing teachers who just learned ASL or teachers using Total Communication or Signed English.

    The only children I know who are totally immersed in ASL from day one are children of native signers.

    (e
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  11. Maybe check out:

    http://impactfamilies.org/

    ...especially if you can visit!

    - Linda
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  12. Linda said: "Cuing can be a choice for a moderate loss..."

    It is a common misconception that Cued Speech only works for those with moderate hearing loss. However, Cued Speech has been used successfully for English acquisition as a first language in severe and profoundly deaf individuals as well. The benefits to literacy in both the moderately deaf population and the profoundly deaf population has been studied and published. "Cued Speech and Cued Language for Deaf and Hard of Hearing Children" LaSasso, Crain, and Leybaert.

    I'm not arguing against ASL by any means. But, I do want to clear up the misconception that Cued Speech is only for those with moderate hearing loss.
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  13. In California, when a baby has been identified as deaf and is referred to early start services, the child's family can get an Individual Family Service Plan (IFSP), which is similar to the Individual Education Plan (IEP) that is developed during school age. The family works with the local service agency, whatever it is - each county in Calif. has one. The family has to know what is *possible* to get, though. That's why AB2072 will be so valuable.

    One drawback is that you can't receive services that don't exist in your area. Aside from the metropolitan areas (San Francisco, Los Angeles, maybe Fresno), California is mostly rural. Yet most deaf people, and their accompanying resources, are within the metro areas. It's all very well to demand that families have an ASL mentor, but what if they live in Eureka (6 hours from San Francisco)? So the families are left with the choice to either relocate to an area where there are more resources, or do the best they can with what they have locally. It's a difficult decision, you're right there, E.
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  14. (e, you said it all when you said it is not so black and white. There isn't a simple answer. Which is why I support parents choice and even so, some will say that some deaf/hoh kids will fall throught the cracks. I see the same thing with Hispanic population because there's not only deaf issue but English as second language that is complex when attempting to either go for oral or signed language route. No easy answer, that's for sure.
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  15. Hi (e,

    I am grateful for my mum's sheer stubborness, when I was born she KNEW I would be deaf as a day old I was the only baby who didn't cry when the fire alarm went off. The doctors labelled her as neurotic first time mother, when I was 9 months old to the doctor's dismay she started attending signing classes and this was when she first met a deaf adult who was teaching the class (she also had deaf child "S" of same age as me).
    I had an access to language and were able to communicate with my mum and dad. When I reached 2 I was finally Dx as profoundly deaf and recieved hearing aids. I didn't learn to speak until I was 5. My speech progressed through speech therapy after school then later at deaf school. I have been exposed to both Mainstream and Oral Deaf school, I liked both, I wasn't pulled out of classes since I was on par with my hearing peers, although, I and S were pulled out for maths as our maths were more advanced than the mainstream class. I and S were sent to the deaf school because the high/secondary school would not let us take part of Music and French classes so we won scholarship to private school and guess what.. my french were better than my english!! LOL... just tad a bit. I liked the deaf school because I feel I fitted in. At 32, I can communicate with both languages (french aswell!), I have worked internationally (South America, Europe as well as english speaking countries Austraila, South Africa and America) and I can speak well enough that people don't realise that I am deaf unless I told them. I am currently learning to read in german as my parents had retired and living in Austria.
    I work as TA at mainstream school, we have sign classes that children choose as activity which the children loves. Sadly the government doesn't recongise BSL as language and refuses to add it on the school's curriculum.
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  16. @e) If an truly sign-based education has never been tried anywhere, then should we use deaf children as cultural guinea pigs ? and what happens if an 100% signing education doesn't work ? Only Total communication should be used, and I'm happy that is happening. I think the Bi-Bi jury is still out !
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  17. I happen to live in the US in a city where we have one of the best private non-tuition schools for the deaf. They use a ASL/written english/spoken english curriculum. My sons diagnosis will be known soon, and if he is moderately to profoundly deaf like we fear, we will be learning ASL with our son. I feel that having ASL will help to bridge the gap between us parents and our deaf son, and I look forward to our son learning both, and having the richest possible communication with his mom and dad
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  18. My daughter was not correctly diagnosed as hearing impaired until she was almost 6y.o. Even though we knew she couldn't hear, the doctors kept telling us something else was wrong. When we finally got her correctly diagnosed, started her into mainstream school where she began intensely learning SEE (Signed Exact English) which is a sign for every word and is used to teach the child to speak and write English as hearing people would. Along with this, she learned how to write, speak and speechread English. This allowed us to learn to communicate with her as she was learning to communicate with the world. As she got older, her socialization with other HI/Deaf people exposed her to ASL and when she got into high school, after she had her reading, writing and speech skills done well enough to be in honors classes in high school (including winning a college scholarship for giving a public speech orally); she was formally taught ASL. Along with her classmates, this has proven to be very successful. They can communicate with deaf and hearing impaired people like them who can't speak and only sign; they can communicate with people that are hearing and do not sign. She graduated only one year later than she would have had she been hearing and is now attending college seeking her degree in photojournalism. We have moved to Missouri and are horrified to hear MANY parents tell us that their school systems, doctors and support systems are telling them that if their children learn sign language that they will not learn to speak. THIS IS A HUGE LIE. The authorities that are telling these parents this are hearing and do not understand the impact this will have later in these childrens lives. We have seen what it does firsthand and it is horrible. The parents don't know any better and go along because they don't realize they have a choice. It makes their learning experience with their child so much harder. We hope to make a change in this ancient system to help not only the children, but their families as well.
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  19. You help me alot with how to deal with hearing impaired kids........... i have to do a project on this kids
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