Monday, April 27, 2009

To Help Deaf Babies, Support Hearing Parents

Talk is cheap. Protests at oral programs empower Deaf adults but do very little to actually help Deaf babies gain access to ASL. The protests mostly cause hearing parents to want to distance themselves and their children from the Deaf activists involved. Very offputting. From my perspective as a hearing parent, I see nothing actually being done to help Deaf babies.

Many Deaf adults want to help support hearing parents, but it is conditional. It has been said that Home is where you are accepted unconditionally. To truly support hearing parents, it has to be like this. Unconditional. Telling them that the best way is ASL only, without cochlear implants, is not unconditional. This message along with the help that goes with it will be rejected by most hearing parents.

To truly reach these parents, you need to meet them at the beginning. In the early intervention programs that will lay the groundwork for the rest of these babies lives. Most parents will have already had a confirmed diagnosis of their child’s hearing loss from the newborn screening process, and the audiological appointments that followed. The audiologist will have most likely given these parents information on hearing aids, cochlear implants, and the different methodologies available. If there are any early intervention programs in the area, this information will also have been given to them. If there was a program that was available that included ASL and verbal language therapy, that information would be included. This is where true support will happen. This is where the parents need you. To be there with an option that currently is not available in most areas. To show them that their children can have the best of both worlds.

Imagine a program that could truly give Deaf babies all the options. ASL for a Deaf Identity, and involvement in the Deaf Community. Verbal speech for easier interaction in the local hearing community, and hearing extended family. A complete language toolkit for optimal success as an adult.

Will it happen? I have no idea. I hope so.

K.L.

41 comments:

Anonymous said...

This is SO true! Nothing will ever happen in a positive way until Deaf adults realize that it really isn't about them. So far, everything I've seen has been done to make them feel good about themselves. I mean, seriously, how could any rational person actually think that picketing AGBell would make them look like anything but ridiculous fools, especially to hearing parents of deaf kids?

Anonymous said...

I must disagree. ASL is not simply an option, it is a necessity, like water and air for survival, at least for the most precious years of language development (0-5 years old).

Sign language is the only language a deaf child has complete access to (as opposed to all other communication systems or tools intended to provide "increased" access to spoken language).

A deaf baby, regardless if s/he is implanted or wears a hearing aid still needs 100% access to language - often we don't know if the implant or the hearing aid works until much later, e.g. 2 or 3 years old. And if it doesn't work, then what does the deaf toddler have to fall back on, if ASL is taken away from the child?

Of course I don't agree with some of the tactics used by certain people and organizations, but we all basically have the same message, like the title of your blog, ironically - ASL comes first, then all additional options and tools- sure, they're welcome, as long as the deaf child has ASL as the safety net.

For too long the deaf schools have been dumping grounds for CI/oral/hearing aid failures. If only they had ASL from the start...

Anyway, I also find it odd that you seem not to value ASL above all other "not as accessible" tools/languages, and you write for the ASL-CI blog. Maybe you should be writing for a blog titled, Options for the Deaf Child, not the ASL-CI community blog.

Anonymous said...

You're trying to get us to slip up and say that there should be protests at programs while students are in attendance, but we're not going to take the bait. Please don't insult our intelligence.

K.L. said...

My point is that in reality, most hearing parents will be choosing the cochlear implant. ASL is still not available to parents who choose the implant. If it is going to be available to these children, it needs to be a package WITH the implant, not just marketed as an alternative to the implant.

Anonymous said...

There isn't a whole lot to insult.

Candy said...

Excellent post.

Look at DonG's latest vlog. None of it makes sense. Because for one, NRA is a powerful organization; AIDS treatment is much more effective now. Additionally, some things are not meant to be compared to/with.

Hearing parents of deaf children have every right to make the choices that they do. Yes, C.I. is here to stay and if DonG says that we need to do something about it, pray tell, what is it that he has in mind in regards to "doing something about it?"

Dianrez said...

We need to get the information out to parents how important ASL is especially with the restricted AVT being recommended to CI babies.

One way is to reach parents at the hospital during early identification, before the implant is discussed.

Another way, and you might disagree, is informing the public by raising their consciousness by--demonstrations in public, at the AGBell headquarters, and in places where parents would be who are concerned about their child's hearing. Merely leafletting and a few PR efforts will not do the job. This needs to be thought out more carefully.

Miss Kat's Parents said...

I agree. I think that we need to move past "CI's don't work" and "You child will grow up and take it off and hate you for forcing it on them." And start to show parents why ASL is still important for children who hear with a CI. Scare tactics don't work, especially when the parents clearly see that they DO work.

I said in my own blog that parents go to AG Bell, not because they make the decisions for them, but because they support the decisions they have made. If the Deaf community had programs to support parents and give access to ASL AND spoken language to children, I believe parents would flock to them.

In my area, 2/3's of parents use some sign with their child at 0-3 BUT once they enter preschool they choose the oral program 10 to 1 vs. bi-bi. Why? Because they do NOT want to give up the spoken language component, and that is what our bi-bi program requires.

Anonymous said...

" C.I. is here to stay and if DonG says that we need to do something about it, pray tell, what is it that he has in mind in regards to "doing something about it?"

Thanks, Candy. This is what I was trying to tell others including DonG. I think DonG does understand what is needed to be done.

MERGE the two. Advocate ASL and Deaf culture as a part of the educational planning for the child with a CI.

This is what we should be promoting. Rather than protesting oral programs and badmouthing cochlear implants. Hearing parents, even myself as a Deaf parent of a CI kid, prefer to keep a distance from certain Deaf adults.

Children with CI come from all walks of life.

Imagine a spectrum of one far end of those CI kids who benefit greatly from auditory input only to the other end with those who benefit entirely from visual input.

I feel strongly that all deaf children on the spectrum should be exposed to ASL and the Deaf community. Self esteem is a fragile thing. Giving the child everything at early age including access to Deaf adults and ASL is important.

Some deaf kids shouldnt have CIs in the first place as they are primarily visual learners.
I agree. But to meet parents' wishes that their child learn to hear and speak to a certain degree, so be it then.

Some Deaf kids with CI do so well with just listening and speaking (including age appropriate language/communication skills) Kudos to them, but they are a small percentage. They still should be exposed to ASL/ Deaf as they will never know how much they are missing until they immerse themselves in the Deaf community.

Focus on advocating ASL in school districts with DHH programs. Our DHH program does not have ASL as the language to be used in the classrooms. Focus on changing state schools for the Deaf's attitudes towards differential instruction techniques to meet all kinds of Deaf kids with or without CI.

NACPAC

Anonymous said...

Of course these organization support parents. To imply otherwise is ridiculous. They support parents who are being mislead by beautiful propaganda materials sent out by AGBell and cochlear implant companies. They are out there letting parents know the information that is NOT shared in propaganda materials. For example...the benefits of ASL in early language acquisition, the lack of fluent language models in Deaf education programs, the lack of quality, standards, and data in Deaf education programs.


Believe me those working through the organizations that protest and hold ASL rallies are also doing much more than social activism to spread awareness. They are working and collaborating with other organizations to build quality materials and programs that Deaf babies and their families need to learn more about ASL, language acquisition, and social capital.


It takes money and time to do these things. Unfortunately, these organization don't have the funding like AGBell who is sponsored by Cochlear Implant companies to create these kinds of materials. No wonder there is an imbalance of information. Look who has the money.

In the meantime, these organizations are very involved in early intervention. They are very aware of everything that you mentioned.


Good grief...give people some credit. Learn more before you opt for criticism of organizations that you only see from the outside looking in.

kim said...

You know what parents need more than anyone else. All parents want the best for their children. Support and results is the way to win them over. Not lectures and protests.

r4twom4n said...

Well I cant complain much about the service I am recieving here in Suffolk England. Initially persons at the local Deaf club were a bit anti implanting my daughter but they have since come around. I think some of the fears they had ws in losign the identity they have fought so hard to gain. HOwever I know my daughter is deaf. She may be able to hear enough to speak with her CI and lead a life in the hearing world. But we are giving her a choice to be part of the Deaf community if she chooses. We are learning BSL, being paid for by social services at tehh local Deaf Centre. I am attending a fund raising event for National Deaf week next week involving Signed Singing. Great fun.
Talking to hearing friends with deaf children the impression I get is that they are basically scared of the Deaf label. They feel forced into a world they didnt choose. Not that the deaf adults chose it. It is hard all round. But the whole point of community is to raise the children to be healthy, happy and successful. We all need to work together.
I am really happy that my daughter and I have received such a warm welcome at the Deaf club and feeel that I need to make and effort too.
I am enjoying learning BSL and have made some very special friends, Deaf and hearing.
Lets all care for the children like grown ups.

AL said...

Reading the comments left by parents of deaf children with CIs here gives me hope. Even if the leaders and followers of AFA and DBC are bent on demonizing CIs, many parents are choosing sign language despite the negativity coming from these two organizations.

Deaf schools, central to the deaf community, are choosing to integrate spoken languages into their programs to better serve deaf children with auditory access to spoken languages. Especially the Learning Center in Mass, Maryland School for the Deaf, and now Indiana School for the Deaf, all who led the bilingualism movement (incorporating ASL as the language of instruction) two decades ago, are again leading the rest of the deaf schools to provide bimodal bilingual education to students in a deaf-friendly environment. I believe they will be far more effective in supporting parents with deaf children.

Anonymous said...

AFA supporting parents?

Not true. AFA leader Ruthie Jordan left a comment at a blog that she is working on stopping the passage of Wisconsin bill. This bill will force mandatory health insurance coverage of hearing aids and cochlear implants of Deaf minors in that state. If this bill fails, this makes more difficult for the parents to obtain cochlear implants and hearing aids for their deaf children.

K.L. said...

The AFA and DBC are not primarily geared to support parents. What is needed is an organization whose FIRST priority is parental support. They need to be unbiased against implants and hearing aids, and be willing to work with parents, rather than simply telling them what the Deaf Community wants them to do.

Anonymous said...

Dear parents of deaf babies, I am sorry to see how confused you have been. Because of my values and beliefs, I urge all parents to make the best decision. Doctors or other medical providers should not be in the position to decide what's the best course of therapy for your deaf child. You are entitled to having a parental right however your deaf child has the rights, too. Putting a CI in the child's without informed medical consent is against my basic principle. In case if the child's CI goes into malpractice then eventually he/she could sue the parents/doctors for taking away their right to self-ownership, the liberty. Just 2 cents thought here.
Aguabo
"Mother Teresa Supports Every Child's Right to Life, Liberty and Property"

Miss Kat's Parents said...

Dear Aguabo,

We are not letting doctors tell us what to do. WE are well informed, well read, intellegent people, who are making the best decision for OUR children.

We are giving them choices and options. We are giving them the opportunity for a visual AND auditory language. We are giving them the skills to live in the Deaf and Hearing worlds. We are giving them ALL the tools they could ever need.

My daughter has the right to have a device that will give her access to sound. She has the right to learn the majority language. She has the right to hear well and acquire spoken language with ease. She has the right to chose to use her voice OR ASL.

Find someone else to pity, our children THRIVE!

Anonymous said...

I am a HOH adult and mother to two HOH daughters. We are all learning ASL as a family. Since my hearing loss started in adulthood, I know I no longer 'fit' in the hearing world but I don't belong to the Deaf world either. Sure I can 'get by' and I can function like a hearing person in most situations but I am not hearing. My daughters are not hearing. We have found unbiased support and information through a great organization called Hands & Voices. This group is dedicated to supporting families regardless of their communication styles, levels of hearing loss, implant or no implant... just supporting the choice that is right for your child with accurate, nonbiased information!

Anonymous said...

Go look at the last comment in DonG's Deafhood Discourses. How about coming up with a new blog topic relating to the coment number 51 by nacpac?

Li-Li's Mom said...

I have to address the claim that ASL comes naturally to deaf children, and is as necessary and available as water and air. It may be so if you are already in the Deaf community, where your parents, grandparents, teachers, friends, neighbors all use the language.

And I don't think the CI is for all deaf children, whether they qualify medically or not - some have broad, wonderful established ASL-based networks in place and intensive and full communication via sign can begin immediately in the home.

But for a large percentage of hearing families without Deaf ties, ASL is not the easily accessible, native language that those who come from Deaf culture and from Deaf learning environments seem to think it is and is not a part of a deaf child's natural learning environment.

English is spoken by ~1.5 billion people, acc. to most estimates.
ASL is used by 100K-500K people.

When you first consider language and communication options for a deaf child, and do some research to see how many people use ASL and therefore what opportunities it will provide your child, you can find ASL listed among the following:

-Lozi Africa 550K
-Udmurt Russia Kazakhstan 550K
-Kalmyk, Spoken in Russia, China, Mongolia 518K
-American Sign Language used in USA, Canada and Guatemala. 100K to 500K
-Breton Brittany, ≤ 500K
-Erzya Spoken in Russia ~500K
-Maltese Malta, EU ~500K
-Moksha ~500K
-Zapotec Manguean,Mex,USA ~500K
-Fiji Hindi Fiji, Aust, NZ, USA, Canada 460K
-Lezgian Russia, Azerbaijan, Georgia, Kazakhstan, Kyrgyzstan, Turkey, Turkmenistan, Ukraine, and Uzbekistan 450K
-Hakha-Chin used in Sino-Tibetan Burma, India, Bangladesh 446K
-Limbu official in Nepal, India (Sikkim) 441K
-Mapudungun in Chile, Argentina 440K

To a hearing parent looking to provide a deaf child with the broadest possible communication options for learning, and presented with a choice of ASL OR spoken language, the decision to choose ASL without auditory aid (either hearing aid or cochlear implant) can be similar to selecting from this list. It is as though you are asking someone to decide that -- despite having no family members, neighbors, medical staff, nearby schools, books, television shows familiar with this language -- the family will now learn Lezgian or Mapudungun and expect those in our environment to everyday communicate with our child in this way. Or suggesting that we move to the far away location where there is an Mapudungen enclave, learn the language, and consider your child's language and learning bounded within that environment.

Basically, suggesting ASL as a primary language option, and even expanding that to a traditional bi-bi environment and augmenting ASL with written English can feel to a hearing parent as though you've just recommended Lozi or Hakha-Chin.

And finding access to ASL can be nearly as hard as some of these other languages in use by extremely small populations: ASL is not commonly taught in the average neighborhood schools or used by teachers and daycare providers, medical and other professionals, it's not seen on television, read in books, used by grandparents and friends. For my family, we're lucky: ASL is available, but making it a consistent part of her daily life requires far more effort and resources to achieve than does obtaining the capacity and skills necessary for learning spoken language.

Cost is just one issue: Tuition and transportation to the only available ASL educational environment within our reach, a private deaf school, is what, something like ~$35K a year (multiply that out for the duration of a child's schooling)? Contrast that with CI surgery: insurance pays some smaller percentage of the actual/billed surgery/materials costs of a CI (and the hospitals/CI companies eat the rest) -- one parent calculated that the costs paid by his insurance for his child's CI were actually only <$8K in total.

Another metric is time/effort involved: because our choice is to provide both ASL and spoken language our 3YO travels ~3 hours daily to attend a school that can provide her with the ASL immersion necessary to access ASL as well as spoken language.

One more measurement: likelihood of success (meaning an expansion and development of communication options or abilities). Does the language/method chosen provide an ability to communicate seamlessly and with the least limitation in school, at home, in the community, at work, in the world. The numbers of language users provide one perspective, and a child's facility with these languages provides another. Right now, Li-Li is equally fluent in both: they each provide benefits and increased options for communication. What the future holds, we don't know: we're assessing that all the time.

I think that making ASL more accessible and visible and part of our education system and showing how it can expand communication options throughout life, and showing successful role models in all walks of life would be a better use of effort than continuing to argue whether the choice should be ASL vs. CI.

Anonymous said...

LiLi's Mom,

You missed my point. I never used the words "natural language" or "primary language" to apply to ASL for deaf children because obviously those terms are debatable.

My point: For deaf babies who CANNOT hear, tell me which language can deaf babies learn quickly with COMPLETE ACCESS? A visual language, and ASL meets that criteria. Spoken languages or artificial communication systems don't. Obviously for a blind baby, I would not pick a visual language, but a spoken language. This same principle applies to deaf babies.

I never said anything about how easy it is for hearing parents to learn ASL, or how popular or how many people in the world know ASL, etc. Of course it's difficult to learn ASL, especially when you have a job, other children, and life to interfere....

My point is- you don't want to gamble your deaf baby's first three years of life on a cochlear implant/hearing aid, and pray that those tools work.

As a parent, I would want a secure, completely accessible language for my baby as a safety net, because we all know the critical language acquisition period itself is a short window.

I know of a mother who recently found out her daughter's implant did not work up until she was 3 years old. Thankfully the mom and daughter already were learning ASL from birth so all was not lost. The child had her implant replaced and she quickly started picking up spoken English. Imagine if ASL wasn't in the picture? That is my point.

And I never said anything about choosing one or the other. All I said is to make sure you have ASL as the base, then add as many "opportunities" or "tools" you want to the child's repertoire. There's no limit!

And I agree that ASL needs to be more "out there" than it is now... I also believe the Deaf community is wasting its energy battling CI's, oral education, AVT, AGB and so on - we should be just making ASL more visible and more accessible to schools and parents with deaf children.

Li-Li's Mom said...

Anon, you explain "My point: For deaf babies who CANNOT hear, tell me which language can deaf babies learn quickly with COMPLETE ACCESS? A visual language, and ASL meets that criteria. Spoken languages or artificial communication systems don't."

But that's just it, ASL is NOT something deaf babies can learn with complete access if it's not in use around them. They are not born with this software already installed: hearing families without access to ASL can't immerse their babies with ASL. It isn't naturally available in the environment and can't be picked up passively.

If we want to make ASL a viable option, we need to find ways to get it into the everyday environment of a hearing family. Because right now I could more easily immerse my child in Mandarin than in ASL.

Anonymous said...

Li-Li's Mom,

Sorry, this isn't about you.

I'm talking about the deaf baby.

Which language does the deaf baby have complete access to as in, his/her BRAIN can completely access, completely process in its entirety?

That's it. That's my whole point.

I've already said I agree with you about how we the Deaf/ASL community can do more on getting ASL out there. That's a whole another ballgame.

Li-Li's Mom said...

Anon, we're talking reality here, not theory.

It is about me. Until my child can toddle out into the world and find herself an ASL teacher, there's a bit of an access barrier there, don't you think? Parents are the ones with the responsibility to provide communication, whether it be speech or sign or some other form. With your logic, I should be able to leave her be in silence, and she'll magically pick up ASL from the ether.

A baby's brain can't process input it doesn't have. For the same reason a deaf child can't process sound (it's not reaching the brain), he or she can't process sign (again, it's not reaching the brain if no one is there using the sign).

Anonymous said...

So we are agreeing that if linguistic input is there, then ASL should be the base for every deaf baby, with spoken English as an additional, equally important linguistic input (as long as the child has reasonable access to it, e.g. CI)?

(I've been subjected to countless hours of speech therapy, and I have 100 db in both ears and hearing aids 30-40 years ago did diddly squat for me. What a waste of my education, thus why I mention "reasonable access")

And we agree that as s/he grows up, s/he can choose to continue using ASL, spoken English (via CI, etc) or drop one or the other as s/he pleases?

Then we're on the same side.

I teach at a school for the deaf and it breaks my heart to see so, so, so many oral failures transferring into our school at 8, 10, 13, 15 years old from oral/AVT programs with semi-lingual skills in written English and in sign language.

Their parents ask me, "Why isn't my child able to write English?". I don't have the heart to tell them, if they had complete access to a language, any language at birth, they probably would have had a better chance in learning how to speak/write English.

I of course try my best and teach those students written English... and I'm not successful most of the time. And it breaks my heart.

We all can't hear the window slowly coming shut as the critical language period ends, but we all can choose to give them a language that they have complete access to, as a springboard to everything else.

Li-Li's Mom said...

Anon, yes! I think we are very much on the same side :) And my hat is off to you -- as one of those amazing people who teach children like mine everyday in schools for the deaf, you have nothing but gratitude from me!

My child's first language was/is ASL: more than 6 months elapsed between the time I adopted her and she received her first implant (and of course, then weeks / months before her brain rewired to make use of those sounds), and I couldn't imagine allowing all that time pass without intense communication. She'd already had a full year in an institutional environment that didn't know she was profoundly deaf without any input, sound or sign.

We found an ASL-using EI representative for language therapy, a Deaf advocate via the state, and started 2X weekly parent-infant classes at The Learning Center for the Deaf in MA, a bi-bi school, well before we had an official medical diagnosis that she was actually deaf :).

And now with 2 CIs, Li-Li is chattering up a storm and showing only mild spoken language delays. I credit the ease with which she took on spoken language to her access to ASL. And 2 years later, our little ci-borg is still at this most wonderful school for the deaf with an amazing pre-K program that customizes its curriculum to the students' needs and abilities, in our case, they have a fantastic program that provides their aided/hearing kids (CIs, hearing aids, CODAs) with both verbal and ASL input as well as an integrated deaf environment that reinforces her (and our) sense of community.

But we were and are so lucky -- this is rare access. I interact with so many parents on line and off who are struggling to find some way to integrate sign without these great resources at hand. And so I can't actively recommend what we've chosen (both languages!) to most people I encounter, because access to ASL is just not there for them, and therefore, to their babies.

So I find myself frustrated when I see so much time and effort going towards protests and fighting AGBell, when that strength could go towards making it as possible for parents to access ASL as it is to get medical attention for deafness.

There should be ASL-based parent-infant program and child care centers associated with deaf schools and hospitals.

Baby sign for all children should be pushed: think how much more likely it is that a family would begin signing with a deaf baby if hearing cousins, siblings, neighbors are already signing.

All public schools and colleges should teach ASL for language credit. I work a university with 10 separate colleges and the largest endowment of any college in the world, and we don't have a single ASL class offered.

Every early intervention program should have ASL-fluent representatives to work with deaf children from 0-3.

Public television programming for children incorporating ASL should be increased (more Signing Time, with more signing; more Linda Bove on Sesame Street, signing kids represented more, cartoon signers, etc.).

Online programming: a series of YouTube videos with ASL + music, ASL story time, ASL lessons for children)

ASL + CI curricula for each age group: how to map standard curricula to an integrated ASL + spoken English program that could be implemented in deaf, special ed, and mainstream school environments.

And there must be so many other ways to make ASL more visible and less likely to be looked at as some isolated, unreachable language used by a dropper-full of people far away.

Miss Kat's Parents said...

Li-Li's mom,

You are my hero! Thank you for saying everything that all of us are trying to cmmunicate, but often lack the perfect words.

Thank you.

Anonymous said...

LiLi's Mom,

Beautifully said, I couldn't have put it any better! I completely agree with you about certain organizations and people and their misdirected energy. Bring back Martha's Vineyard, everyone can sign, and we won't know who's deaf, hard of hearing, hearing, implanted, wearing a hearing aid, and we also won't care :)

And you've done great things for LiLi, she's a lucky girl to have a mother like you! :)

Anonymous said...

Miss Kat's Parents,

I'm here to just educate the public that human nature of rights should not complicate with your so called "Mechanical" Philosophy even I was clarified by attorney. He indicated that deaf children's constitutional rights should not be taken away by doctors and parents. Please consult this with yours as an intention to understand the full interpretation of "INFORMED MEDICAL CONSENT".

I pity you for being too hopeful, your hard works and spending thousands of dollars on an agenda for your daughter. I also pity Kat's great self-sacrifice to just please you and your hearing family. Sadly but true, her virtues are being taken away, yes altruism does play a big part of this (See Objectivism 101)

Aguabo

K.L. said...

Aguabo,
Sorry, I'm not buying it. Parents are legally required to be their child's advocate for all things, including medical decisions. All lawyers know this. "Informed medical consent" for children does not mean "do nothing until they grow up". It means "parent's consent". Children do not enjoy hearing just to please their parents. They connect with their implants very quickly, and want to keep them on. Just because they like hearing.

Anonymous said...

K.L.

Be careful, do not assume that parents have the power to make all kinds of medical decisions. Being unable to hear is not considered as a life threat and your position on "parent's consent" is invalid in this particular area. Children are entitled to having the rights to life, liberty and property. It means that they own their body as "self-ownership". CI is not properly designed as the form of two-way choice therefore the children with CIs would not be able to get those chips out as they get older. One opportune time could blow up everything...

I know laws, I work with attorneys and had testified on deaf children's behalf.

Aguabo

K.L. said...

implants can be removed. It is not brain surgery. Since there is always risk in any surgery, and since they don't pose a risk if left alone, they generally are simply left there if the person does not want to use the implant anymore.

Since parents have to teach the child whatever language they will be getting, and the brain needs to get verbal input as early as possible if it is going to understand verbal language, this IS a decision that has to be made by the parents.

A number of years ago, the whole implant issue was brought before Congress. They decided, after hearing arguements from both sides, that it was a medical issue, not a legal issue. They decided not to make a law against early implantation.

Li-Li's Mom said...

Check out this post (and the site in general) for some really great resources:

Li-Li's Mom said...

K.L., I'm laughing as I try to imagine if Li-Li were left responsible for her own education, nutrition, medical care: Her peers all day long would be her achy old labrador retriever and a flock of chickens, television would be her teacher, and she'd be majoring in stuffing playdoh between the floorboards; she'd eat ice cream and cookies for breakfast everyday, sandbox dirt for lunch, and an entire jar of gummy bear vitamins for dinner; and her medical care would no longer include vaccinations, check-ups, or visits to the doctor / dentist, but would consist wholly of stuffing things up her nose.

Aguabo, in the words of Inigo Montoya, "You keep using that word. I do not think it means what you think it means."

"Parental consent" means the opposite of a child's autonomy in medical decision-making: it means that minors must obtain the OK from parent or guardian before making decisions about their own medical treatment. Not that parents need to get a child's permission before medical treatment. And "life-threatening" or not, that has nothing to do with it.

Parents have both the right and the responsibility to make any and all decisions around a minor child's health and medical treatment. When the child is an informed adolescent, parents are encouraged to consider his/her wishes, but legally, the final decision is still up to the parent/guardian.

Kimberly said...

Let me first start out by saying that I am hearing. I have a degree in Education for the Deaf and Hard of Hearing and will soon have a Master's Degree in this same field. I don't have children of my own, but have worked with children for several years, both deaf and hearing. I'm not saying this to make myself look good or something, but simply to let you know where I'm coming from in my comments.

I'd like to respond to K.L.'s post that stated, "ASL is still not available to parents who choose the implant. If it is going to be available to these children, it needs to be a package WITH the implant, not just marketed as an alternative to the implant." K.L., ASL is available to anyone who will take the time to learn it. Just because parents choose to implant their child does not mean they are unable to communicate with them through sign language. From all I have learned and experienced with deaf children, those with the higher language skills in general were immersed in ASL, even if they were learning spoken English simultaneously. The majority of the children I have worked with who were implanted and not given access to sign struggle. Also, ASL is not an alternative to the implant. ASL is a language. It has been a recognized language for quite some time. The implant is what is the alternative. It is a technology invented to help deaf people have more access to the hearing world...but it shouldn't be used to shut out the Deaf world.

I'm certainly not implying that parents do not have the right to choose the way to raise their child. However, I do believe that often times doctors, audiologists, and speech-pathologists only give parents information about assistive technology, while looking down on ASL. There are some doctors, audiologists, and speech-pathologists who are not this way, but I have seen many who are. The ones I am referring to lead parents to believe that the only chance for success in life for their deaf child is a hearing aid or an implant, and that is simply untrue. While I support parents' right to use the latest technology to attempt to give their child access to sound, I do NOT support the idea that English is somehow to superior to ASL. Also, I believe that parents' have the right to know the potential for failure of their chosen technology and should be given access to stories of CI failures along with the success stories so that they can weigh the risks. One of the risks is facial paralysis, and I have seen a child who suffered from this condition after his surgery. A year later the implant was not working. Was it worth it? I don't know. His parents decided to do a second CI surgery, so I'm assuming it was worth it to them. Either way, I think parents need to hear those stories as much as they hear the stories of success in spoken language.

I absolutely love teaching deaf children, learning about how they learn, and learning about the technologies that they use. Again, I am not advocating that parents use ASL only in a world of so many technologies. I simply advocate for ASL to be seen as equal to English and for parents to be given ALL the information regarding the education of deaf children in an unbiased way.

Kimberly said...
This comment has been removed by the author.
AskMieke said...

I agree and disagree with some of the posters here. AGBell was wrong to protest the ASL superbowl commercial and they are wrong to not make clear the necessity of early language to ALL students. Parents of deaf children, need to relax a bit and get to know their own child. Meet as many deaf students and adults as you can, and join in some of the social events, because ready or not, you can't "FIX" your baby, and they will become deaf adults one day.

All adults who work with parents and deaf services need to offer support and accurate information to parents.

Early language, loving families, supportive and creative educators is what all children need.

Jeanne Ward said...

Everyone should read this post. I think this is a very important issue that we all should help. I will help for all deaf babies.

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hearingaustintx said...

It is so hard to have a baby with a hearing problem. That is why I will definitely support hearing parents. In that little way I can help babies from hearing loss.

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John W Dudley said...

Born 1933 on a black land farm near Penelope Texas and raised by Deaf Grandparents, grew up with deaf siblings, family and friends. I have been an avid supporter for the Deaf my entire life.

www.deafusa.com

John W Dudley said...

Sign Language Interpreters are needed all over the world. Join in with the ranks who are learning a new language and starting a new career.

John W Dudley