Research is catching up to what parents and professionals working closely with our children already know from experience, that cochlear implants in combination with Auditory-Verbal therapy provide our children with the greatest chance of leading their lives successfully and happily in the mainstream alongside their peers born with normal hearing.

(Click here for link to article)

Sunday 24th January 2010: As young hearing-impaired graduates from The Shepherd Centre make their final preparations to begin “big” school, new data released today shows they can expect to do just as well in their language and vocabulary development as their mainstream peers.

Preliminary data analysis from The Shepherd Centre shows that the vast majority of hearing impaired children who graduate from the Shepherd Centre to a mainstream school will score in the “normal” range; for vocabulary (79 % of children are in the normal range) and language (71 %of children are in the normal range) as they enter school.

Around 84% of the general population of children will be in the normal range for language and vocabulary skills.

The data is derived from a sample of 41 Shepherd Centre students who were diagnosed through the NSW SWISH newborn hearing screening program and who graduated from The Shepherd Centre’s Early Intervention Auditory-Verbal Therapy program into mainstream schools in 2007, 2008 & 2009.

The similarity between the scores for hearing impaired children and mainstream kids would have been unheard of ten years ago, where just integrating a hearing impaired child into a mainstream school was seen as a major achievement. In many cases children over a decade ago would have had very poor communication skills.

According to Acting Director of the Clinical Program at The Shepherd Centre, Aleisha Davis, the main developments underpinning these results are early diagnosis, improved technology and improved early intervention. Universal newborn screening in NSW was introduced in 2002, this has made a big difference.

“The average age of children with hearing problems joining the Shepherd Centre program is now eight weeks, whereas a decade ago the average age was over two years. Fitting the children early with the latest hearing devices allows them to participate in Auditory-Verbal therapy from a very early age. Early diagnosis, early fitting and early intervention are the keys to success,” said Ms Davis.

The Shepherd Centre was the first fully Auditory-Verbal Therapy Early Intervention Agency in the country starting 40 years ago. Today the centre has five internationally certified Auditory-Verbal therapists, which is 28% of those certified in NSW, 14% of those certified in Australia and approximately 1% of those in the world with this level of professional certification and ongoing mentoring.

“The results of this study show that these children, who have a range of hearing loss from profound to mild are achieving results that were unimaginable just ten years ago. This is a great outcome for parents of children with hearing loss, as well as the children themselves who can go on in life and lead fully normal integrated lives reaching their full potential,” said Ms Davis.

“Cochlear implants have also made a huge difference to the prospects and outcomes of children with severe and profound hearing losses. In many cases now, with early diagnosis and cochlear implants and early Auditory-Verbal therapy through early intervention programmes, their communication skills are excellent and many people would not know they were actually deaf.”

The clinical team at the Shepherd Centre will continue to test, analyse and report on the progress of their graduates. Data on speech production is currently being collected and will be analysed in the near future.

Click Here to download The Shepherd Centre Outcomes Document

___________________________________________

(Click here for link to article)

Cochlear implantation enables quality of life equal to normal hearing peers

1. February 2010 01:11

Amy: Let’s discuss a topic which is tangentially related to Auditory Verbal Therapy– and that is, diagnosis.  Recently on CI circle, the topic of Usher Syndrome came up.  Many parents proclaimed that their children did not have Usher Syndrome, though they did not know exactly why they were deaf.  In the past, I have also heard parents discuss hearing loss, and found that often they had previously believed that their child could hear based on their own “tests” at home, or worse, “testing” that their family doctor performed.

There are two major problems here.  First, we want to disseminate factual information about Usher Syndrome.  Myths abound in the community of those with hearing loss.

Myths:

-it’s rare

-you can tell if you have it, by early childhood

-typical gene testing done on deaf babies can usually diagnose early

-lots of babies walk late

First, it is not rare in deaf children.  More than 1 in ten are probably afflicted with Usher Syndrome.  Children usually don’t know until teens or adulthood.  There are only 3 ways to diagnose this, and it is not typically tested in the ordinary testing done by geneticists or family doctors who know a child is deaf.  Most kids have been tested for Connexin 26 and 30, had their kidneys tested and had an EKG. They may have had testing for CMV.  But only recently has the (very expensive) gene testing for most Usher Syndrome genes been available; not only that, but there are STILL unaccounted for genes for Usher Syndrome.  So, if you don’t know the cause of your child’s  deafness, you can be sure that Usher Syndrome is still one of the possible causes.

Once you have a child who is walking late, you have an even greater likelihood of falling into the genetic likelihood of your child having Usher Syndrome, if they are deaf.  Average babies walk at around 13 months, with the medical community suggesting concern or testing when a baby is not walking by 18 months of age.  And yet, we still hear of people pooh-poohing parents who are concerned about their 20 month old not walking.  Sure, there are kids whose range of normal is outside of that time window, but this is cause for concern, especially if they know that their child was not premature and has no other serious health problems which would inhibit walking.  There are also confirmed cases of Usher Syndrome in kids who walked within the normal time frames.

The only way to confirm Usher Syndrome is with an ERG test, which can be difficult for children.  Gene testing which is positive can also confirm, and lastly, the newer OCT (Optical Coherence Tomography) tests can confirm, if there are signs on the retina.  Dark adaptation testing can also confirm the need for further testing.

We also want to make sure that parents can identify children with hearing loss early.  Some babies missed their newborn screening, or were born with hearing but had a decline within months or years.  Don’t rely on the guesses of uninformed “professionals”– get a full ABR test to find out.  Don’t believe that it’s just “fluid in their ears” or that “boys talk later.”

Melissa, I believe you have some directly related stories?!?

Melissa: I first became concerned that Rachel could not hear when she was all of a week old when I noticed that she did not startle.  When I began informal testing on my own, I could not get her to respond.  At her first visit with the pediatrician when she was three weeks old, I voiced my concerns.  His response was, “You are an overly anxious new mother who does not understand how newborns react to sound.”  At her two-month visit, I voiced my concerns more forcefully.  He told me that he would show me she hears and banged something behind her head while I was holding her.  He tried a few times, thought he saw her eyes blink once, but agreed to refer her for an ABR.  A few months later, I showed him an article on the importance of early detection and early intervention for babies with hearing loss.  He responded, “I think we caught it in time.”  Awhile later, we left him.  When our son was born, he was the pediatrician on call, but he sent his partner instead.  We knew why, but his partner didn’t.  We mentioned concern about hearing, and he clapped right in front of Adam’s face, and then Adam blinked.  He then said he hears, and I told him he needed to clap behind Adam’s head far enough away that Adam wouldn’t feel air from his clapping.

When Jessica came along, we found out that she was deaf when she was less than 24 hours old.  When our pediatrician in Atlanta saw Jessica at an early infant visit, she noted her arching her back and her overall floppiness.   She proclaimed to me, “She has the most amazing collagen vascular system I’ve seen.”  I looked at her thinking but not saying that that was one of the most off-the-wall diagnoses I’d ever heard and explained to her about vestibular issues.

These stories point out that we, as parents, need to trust our instincts.  No one, including professional experts, knows our children as well as we do, and no one spends as much time with them as we do.  In addition, while medical professionals have to learn about multiple problems and issues, we get to subspecialize in just our children’s issues, and so, if we take the time to educate ourselves, we may actually learn things that the professionals do not know.

Looking at the flip side, we can also use these opportunities to educate the professionals.  My husband’s cousin, who is a pediatrician, told me that, after hearing the story of our path to having Rachel’s deafness confirmed, he always takes parents’ concerns about their children’s hearing seriously and will also observe for hearing during their visits.  When Rachel was a baby and toddler, we had both medical and educational professionals insisting that she would not be able to master spoken English, that she needed to learn sign, and, later, that cochlear implants don’t work.  Several years later, when Rachel was a hearing, speaking teen, I contacted three of these professionals, all of whom remembered us, and told them about Rachel and emailed them links for videos of Rachel so that they could learn how wrong they were and, I hope, counsel future parents differently.

Amy: I think that, in a nutshell, we both think that parents’ suspicions should not be discounted, and if they have a feeling that something isn’t quite right, they should try to get an answer.  It is never wise to simply rely on the advice of one or two professionals.  Read, become educated, insist on appropriate testing.

Being concerned is not just alleviating the mystery.  Late diagnosis of deafness might result in inability to speak and delay in education for years.  Late diagnosis of Usher Syndrome has the potential to result in inability to take advantage of the upcoming therapies which are on the horizon.  Make it your business to ask questions, research, and find answers.

Definitions and Resources:

Hearing Tests:

You need either an ABR or ASSR to determine if your child or newborn can hear. An ABR should be done as soon as possible because older babies and children may need to be sedated. ABR requires quiet stillness in order to be performed.  Click here for additional information.

An ASSR test can distinguish the amount of hearing in the significant loss areas (severe to profoundly deaf) with great accuracy. For me (Amy), my younger son’s ASSR showed no response to 120 db. This not only encouraged my surgeon toward our preference of early implantation, but gave me a “break” regarding the hearing aid trial, which had been going along with little or no results (but a lot of aggravation). I knew that he had no residual hearing.  Click here for more information.

OAE tests are often used in screening, and should be followed up with an ABR test. Anecdotally, I (Amy) scheduled an ABR for my 4th son because my 3rd was deaf. When I arrived, they had accidentally scheduled an OAE test, which he “sort of passed” (I will leave the part out about how my husband stormed around and threatened when they insisted that they didn’t have the appropriate people that could administer the ABR on that day). We waited another 48 hours only to see him completely fail the ABR. We weren’t terribly surprised, but we were somewhat surprised, as we have two hearing sons as well. The point I am making is that the OAE was not sufficient for a child in a family who already had hearing loss. We were trying to bypass the screening and go straight to the findings… but as we have often found, the “professionals” were confused and didn’t realize that we knew what we were doing when we scheduled the ABR test. Suffice it to say, the person who said he has passed the OAE was chagrined and learned a lesson. Whether it was her incompetence or the OAE itself, I will never know. OAEs record the sound produced by the cochlear hair cells, a “byproduct” of the hearing process. It is a cheaper screening tool, but a full ABR is required eventually. ABR tests record evoked electrical responses to sound at the brainstem level.

It’s a complex science, but with either the OAE or the ABR, one will eventually have to have an ABR.

Otochip testing for hearing loss and Usher Syndrome is available here.

Consent and ordering information regarding testing is available here.

Specific Usher Syndrome information is available here.

Amy: Everyone is into discussions these days regarding healthcare in our country.  How can we make it more affordable?  Accessible?  Regardless of what bill we end up with in congress, in the next few years we will have to get some important messages about hearing loss to insurance companies, doctors, and the government.

Coverage for hearing aids and cochlear implants is crucial.  This isn’t about being fair or nice.  Sure, we want companies and the government to be fair and nice, but we are realistic– many decisions are made because they are a cost effective way of dealing with a medical condition or illness.  We don’t want to be throwing money around for experimental or wasted use.  Coverage of cochlear implants SAVES society and insurance companies money– and lots of it.¹ As parents, of course, our reasons for wanting coverage are deeper and more about wanting the best for our kids– but in this case, it’s in perfect alignment with cost saving measures.

The world operates as a hearing world.  As much as we try, we cannot (for example) make the entire world handicap accessible.  We’ve all seen wheelchairs at amusement parks or national forests.  It’s great that there are paths and various things which make bathrooms, restaurants and scenic overlooks approachable to all.  But not ALL areas are approachable.  If you want to hike the Appalachian trail, and you use a wheelchair, it’s unlikely it will happen. So back to the hearing world.  Even in the best of circumstances with a child who uses sign language, even if her entire family is fluent in sign language and her teachers teach with it, eventually she will have to go to college and get a job.  Not every single scenario of learning and employment can be accompanied by an interpreter.  So, when a child goes from being deaf to being hearing with a cochlear implant, the world becomes a place which is much more accessible.  How would you like to go to first Communion or a Bat Mitzvah and not know what the priest or Rabbi was really saying?  Would you like to go to a grocery store and have people turn to you and say something, but know that you would never be able to get it?

More than that, it’s about psychological health.  Studies² show that implanted children are more likely to have normal self-esteem.

Melissa: Cochlear implants, hearing aids and glasses all should be part of basic health insurance coverage.  Children can’t function well in school if they can’t hear or see well.  Adults’ can function better in a job with optimal hearing and vision.  That both hearing aids and glasses are not included in most health insurance plans is absurd.  That some insurance plans still won’t cover cochlear implants is arbitrary and unacceptable.  Part of health insurance reform should be determining what is standard of care and who makes that determination.  Currently, these decisions are made by medical “experts” who work exclusively for the insurance companies.  I have encountered these people too many times.  One prime example was denial of coverage for my younger daughter’s cochlear implant processor upgrade simultaneously with approval for my older daughter’s.  When I questioned my insurance company, the rationale the company representative gave me was that they covered my older daughter’s because she had experienced a failure of her cochlear implant two years before.  Since a failure of the internal implant two years before has absolutely no bearing on whether or not upgrade of the external processor is warranted, the “expert” who made this decision clearly was no expert.  Furthermore, the upgrade was approved for both of her ears even though the internal failure occurred in only one ear.  I eventually won the battle to have my younger daughter’s processor upgrades covered because I was able to prove significantly improved hearing with the upgrade, but it took a few rounds of appeals and six months.

According to www.medterms.com, “standard of care” is defined as “A diagnostic and treatment process that a clinician should follow for a certain type of patient, illness, or clinical circumstance.”  Healthcare reform should include a definition of standard of care that comprises not just that which is necessary for survival but also to preserve quality of life and, as Amy has described, a treatment that will enable society as a whole to save money in the long term even if it is costly in the short term.  Those making these decisions need to truly be experts.  It is not sufficient to use one person to make all medical decisions because, as any physician will readily admit, it is impossible for one physician to be an expert in every field of medicine.  Any true health care reform has to include overhauling the system of who gets to make the decisions, and it should include true experts in each field who receive no benefit from denying care.

Amy: It’s no longer a question of efficacy– we know that cochlear implants work.  Even studies about background noise with kids who have perfect hearing show that anything which reduces the amount of information a child hears can stunt their learning and language in school and in the home.

For parents who are fighting with insurance companies about any aspect of the cochlear implant, keep this axiom in mind: NEVER GIVE UP.  Basically, if you pursue all avenues, you are very likely to win.  The persistent parent will usually get what they need for their child.  I guess it’s a “squeaky wheel” truth!  We fought for over a year for Elliot’s 2nd cochlear implant on his left, non-implanted ear.  When he had been implanted, as a baby, no one was implanting small children with two, and even one was sometimes a challenge.  By the time he was 3 we were considering the idea and it had been done in a few children.  It was intuitive to us that a 2nd ear would be better, but we were also armed with several studies indicating that it was beneficial for localizing sound and better hearing in noise.^3,4 Since they refused 3 times, we were able to go to the state of Georgia’s Insurance Commissioner’s office, which quickly overturned their denials!  The worst part of that process was the waiting… because insurance companies love to use up as much time as possible in the hopes that you’ll “give up.”  (At least that’s my assumption.)  The other part that was aggravating was simply getting the message to them that we were not speaking about hearing aids, that we had reams and reams of data, and that we expected a reasonable response.  Most of their responses didn’t really make sense.  But we also had help from the Let Them Hear Foundation, which gives pro bono assistance to families who need help fighting insurance regarding hearing health.

In the end, within a week of having received the good news, we received ironic news from a Blue Cross Blue Shield of GA Vice President– that ALL the Wellpoint companies had changed their policy to include bilateral cochlear implants.  We believe that our case, along with many others, helped sway them toward this reformation of their policy.  We then had NO trouble whatsoever in early implantation for our youngest son, even though he was below the “recommended age” for FDA approval of a CI.  I tend to believe that there is a giant red sign on our file which says “don’t mess with these parents– it will get expensive!”  Oliver was implanted at 6 and 11 months and insurance was a breeze.  Whew.

Insurance companies are like a lot of other companies, in that they have to consider costs.  No doubt they are dealing in a monopoly-style method, currently, which means they can all deny certain kinds of procedures because they don’t have to worry that we’ll leave.  We have to stick to our employer’s plan(s) and can only switch at appointed times, so we can only really “shop around” at specified times and within very strict parameters.  I hope that this will change so that we can all be consumers of the most satisfied sort!  But in the meantime, when you are fighting your battles with giant mega companies, here’s a tip:  make sure they see you as a real person.  Send photos of your children.  Explain how they use their CI in daily living.  Explain the dangers they will deal with if they don’t have what they need!  I found the addresses and phone numbers of the highest employees at Wellpoint, the parent company, and sent them poignant letters.  And, one of those was the one who called me personally to let me know about the change in Wellpoint’s policy.  I knew everything about him at that point– where he went to college, his resume, etc.  And I believe that he was affected by our letters and was truly happy to see things go well for us.  He indicated as much by his phone call, which was unnecessary at that point.

Melissa: Even if health care reform is passed, parents and patients will still need to remain informed and assertive because the fact is that money to provide coverage will be finite with any option. With cochlear implants, though, the fact is that they work and, in the vast majority of cases, save society money in the long run by enabling our children to be hearing, speaking fully functioning members of society who do not need to rely on special services, such as interpreters, to communicate in the work place or with the rest of the world.

¹Cheng A K; Rubin H R; Powe N R; Mellon N K; Francis H W; Niparko J K. “Cost-utility analysis of the cochlear implant in children.” .JAMA : The Journal of the American Medical Association 2000;284(7):850-6.

²Percy-Smith, Lone; Cayé-Thomasen, Per; Gudman, Mette; Jensen, Jørgen Hedegaard; Thomsen, Jens. “Self-esteem and social well-being of children with cochlear implant compared to normal-hearing children.” International Journal of Pediatric Otorhinolaryngology 2008 72, 1113-1120.

³http://www.sciencedaily.com/releases/2009/09/090915100951.htm

⁴http://www.classroomhearing.org/acoustics.html

Note: it has come to our attention that DeafRead included a link to our blog without our authorization.  The inclusion of our post Respecting Choices on the blog aggregate DeafRead  in no way represents an affiliation with DeafRead or sponsorship of DeafRead by Auditory-Verbal Parents.

Amy: The headlines lately have been about the case of the boy who, with his family, is resisting chemotherapy for a highly-curable form of cancer.  How does this pertain to our blog?  Frequently, we parents of kids with cochlear implants are given the riot act about choosing to implant our children (and spoken language) for our children before they are adults and “can choose for themselves.”  When is something a parents’ right, and when is it the right of society to decide– or, in this case, the right of a small faction of Deaf Culture advocates to decide?  Recently, a group calling themselves Deaf Bilingual Coalition has argued that all children have rights to sign language as their primary, native language.

Melissa: The question is where is that line that defines parents’ rights vs. the child’s rights?  When can or should the government step in?  In the case of this boy, I think it was absolutely right of the courts to step in and order his parents to provide him with treatment.  He has a highly treatable form of cancer, and, by denying him treatment, to me his parents were committing child abuse because otherwise he would most certainly die.  Another instance I believe may be on the same side of the line is childhood vaccinations.  While I do believe parents should not have to vaccinate a child because of medical reasons, such as allergies to an ingredient in the vaccines or a family history of autism following vaccines, I do not believe that schools should accept children who are not vaccinated because the parents choose not to for religious reasons.  While the greatest risk is certainly to the child, the child also poses a risk to those who are immunocompromised.

What I feel is firmly on the side of the line of unequivocal parents’ rights are choices in deafness, both medical and educational.  During Rachel’s early years, we were verbally attacked by an ENT, an audiologist, a school principal and medical professionals for not teaching her to sign.  They gave us their “advice” despite our not asking for it.  Once cochlear implants in children began, especially once they received FDA approval, the signing deaf community became vicious with statements, including saying that hearing parents are incapable of raising deaf children and that their children should be taken away from them and raised in the signing deaf community.  (The rebuttal I always wanted them to answer was whether this also meant that they were unequipped to raise their hearing children and so should have the hearing community take them away.)  Cries of “child abuse” for implanting our children were also frequent.

What amazes me is that this type of absurdity still continues today with extremist groups, such as the Deaf Bilingual Coalition and Audism Free America, fighting to take away parents’ rights to make decisions about their children’s mode of communication and whether or not to implant their children.  We could so easily turn the tables and point out that, in this day and age with the now 20+ year history of implants in children proving how effective these devices are and how greatly children who learn to hear and speak with CIs can benefit, perhaps it is child abuse for parents to intentionally opt not to implant their deaf children and to raise these children with ASL as their only means of communication.  When a child is implanted at a young age and is taught to use that CI hearing to learn to hear and speak, that child can then grow up to make the choice of communicating primarily through spoken language or through sign.  However, a parent who opts not to implant and to raise a child only with sign irrevocably takes that choice away from that child because, while children can learn to sign at a later age, the window of opportunity for the brain to learn to hear starts to close greatly by age 3.  Thus, one might argue that the parents have limited that child’s future options.

Do I think, though, that there should be a law mandating that all deaf children receive CIs? - Absolutely not because, as much of a proponent as I am of CIs and the Auditory-Verbal approach, I am even more of a proponent of parents’ rights to make this choice.  I was amazed at the gall of those who gave us their unsolicited opinions and provided us with only biased information when Rachel was a baby.  What I have worked for over the past 22 years is for all parents to have access to accurate information so that they can make an educated choice.

Amy: I agree regarding parental choice.  There are many areas in which our country ensures wonderful freedoms… and having the choices regarding their children’s’ upbringing is one of those freedoms.  We have the right to homeschool, to choose a private school, to take advantage of free education or some mix of those three.  We have the right to spend time more with our kids or choose a profession– or a mix of both.  Believe it or not, in some countries, when your child is a toddler or preschooler, you don’t get to be home with them, like it or not!  We have the right to choose their physician, choose what activities or music lessons would suit them best.  We have the right to refuse medical treatment that we deem inappropriate, and we can modify vaccination schedules based on their physical needs.  Parents decide religious education.

Similarly, the specifics of language are up to parents.  Of course, I believe that listening and speaking will allow for the most opportunities in a world where most people use spoken language, but there are children who will never be able to speak for physical reasons.  And, if parents decide to raise their child in a purely ASL environment, that is their choice.  I may disagree with that choice if the child is capable of speech, but I have no right to intervene.  Recommend if asked?  Yes.  Create hate-filled emails and send them?  No.  I receive hate mail regularly from apparent adults who think it’s appropriate to call me a racist and proclaim that I’ve committed GENOCIDE (!) for giving my children the gift of speech.  Bandying around words like “genocide” is not only unfair, it’s dangerous.  We should save that word for the real thing.

Melissa: Those hate-filled emails and blog posts and comments are unbelievable.  Rachel and I have both received them.  One recent one that she received rambled on for paragraphs and then said that the next time she would hear from this guy would be face-to-face.  We actually filed a police report on that one.  I cannot fathom what causes these people to act so immaturely and so irrationally.  I have even written into the blogs that they do nothing but chase hearing parents far away with their hate-filled rhetoric and that they would do far better to present the positives of their lives.  Yet, they continue to spew hatred and make threats and false accusations.  They really have no clue what it is to be a hearing parent of a child born deaf today.  What’s more, they have no right to try to force their views and ways on us.  Rather, they should only be presenting information positively and let parents make their choices.

Amy: Melissa, recently we saw a study confirming that children learn much language from peers in the preschool years.  (Click here for study) This just adds confirmation to what I believe regarding children who have  cochlear implants– that they do not need special “placements” when  implanted young.  My hearing kids didn’t; so if my goal is normal speech and language for my implanted children, why would I seek a ”placement” of a special school or classroom for them?  My kids were on-par by age 2, but even if they weren’t quite there by the preschool years, I doubt I would have changed my course.  It’s so important to have normal language models for kids for whom the goal is listening and speaking.  And, I have always avoided treating my implanted children as more “different” or “special” than my hearing kids.  I think it would send the wrong message to them both.  We have always taught them to be self-reliant whenever possible, and for them it is definitely possible!  This is not a “sink or swim” philosophy– we made sure they were well equipped for typical school classes before we sent them off.

That being said, there are certain accommodations I MIGHT use for various reasons:  FM system (in certain classrooms, or with particular teachers), choosing a carpeted classroom, and sitting in the front of the room/close to the teacher for testing situations, particularly if instructions are an integral part of the test (spelling tests or state testing are times when that would come into play).  Would I need an IEP for those?  Probably not.  If we couldn’t afford an FM system, we might, but I think it is more likely that we would prefer to own it (and thus have control over taking it home for troubleshooting, etc).  The list could be longer for other kids, depending on their circumstances, age of implantation, and other disabilities.  So no one size fits all…

But, I just don’t “get” why some parents become so involved in the needs of their children that they don’t realize how capable they are.  And, by relying on special help, they often actually hamper their real education.  By real education, I mean learning the things that normally are learned, rather than speech related education.  As a parent, that is “extra curricular,” in my book.  All therapy was to take place with us, as a family, not as a part of their school day.  Also, I would never have considered a long bus ride, longer school day or more days in school for my preschooler simply for hearing-related issues.  My kids attended a regular, 3-morning-a-week preschool at the typical age.  I think it’s dreadful when kids are gone every day (unless it’s necessary for other reasons) and can’t benefit from their most important role-model and speech teacher: their parents.

Money is another thing to consider.  When thinking about the cost to society, it is no small thing to accommodate with special schools, special teachers, special bussing, etc.  I think we all have a moral obligation to only request what is absolutely necessary, because it comes from the taxes we all pay!  And, there are certainly those who really need it due to grave physical conditions and developmental disabilities.  It reminds me of the difference between flying business class and regular seats– when you think about the real costs to your business, and if you do it infrequently, the reality is that you are better off choosing the “right” thing rather than the “most comfortable.”  Unless you are paying yourself, you still need to think of the moral obligations you have to those who share your workplace.  Things aren’t “free” just because they are provided.  They have a real cost, which is shouldered by every family.  I think we have a moral obligation to consider those beside ourselves, and in doing so we create children who understand the value being independent and compassionate, at the same time.  And if they ever do need help, the funds will be there for them.

Melissa: You know this is a pet peeve of mine for all of the reasons that you mentioned but, in particular, because, in choosing to provide accommodations before there is a demonstrated need, parents could very well actually end up doing more harm to their children than good.  When a child is a toddler or in preschool, it is very difficult to think about the future when that child is grown and goes off on his/her own to college.  I am reminded of a parent I know whom I always thought of as way too involved and overprotective.  Her daughter had gone away to college, and the mother was complaining to me about a situation her daughter had with a professor that she thought was unfair.  She then exclaimed to me, “If her college was closer, I’d go there and yell at that professor myself.”  We might all laugh at that because we know how embarrassing it would be for that college student if her mother really did that, and we know that, by college age, she should be capable of handling this situation on her own.  This story is very relevant to accommodations for children who are hearing impaired.  Part of raising our kids is not just to ensure that they learn how to hear and speak well and master the English language but also to ensure that they grow up as independent adults who are fully capable of adapting to and coping with less than ideal situations, including hearing situations.  They must learn to listen when background noise is present because most situations in life don’t come with FMs or soundfields.  They must learn how to speak up for themselves when they can’t hear clearly and need to change their seat or ask for repetition.

I have read often parents asking other parents about using an FM at home with a toddler, including in the car.  The parents’ rationale is that it will provide the child with optimal hearing all the time and so result in better access to language and speech.  What this actually will do, instead, is create a child who is dependent upon the FM who will not learn to listen in everyday listening situations and whose distance hearing will suffer.  I drive a minivan.  My girls would often sit in the back row, and so riding in the car was not an optimal listening situation.  I viewed it, instead, as a different sort of learning environment, one where they could learn to listen despite the less than optimal acoustics, and they did.  We hold conversations just fine even with my back to them while driving, the engine noise, and them seated two rows behind me.  Occasionally, I have to repeat, but that’s okay.  Learning to listen in noise is part of learning to listen.  Similarly, at home, they can hear me if I call to them upstairs (unless Rachel is plugged into her iPod!).  This is because we didn’t use an FM when they were home but, instead, let them learn to listen at a distance.

Accommodations in school is another topic.  Part of the issue for me is geographic.  In the southeast, schools just do not provide what they do in the northeast and elsewhere.  The money isn’t there, and Georgia, my state, is consistently ranked 47^th to 50^th in the nation for education for a reason.  Thus, the accommodations my girls have gotten over the years consist of preferential seating, tennis balls on the chair legs when the classroom had a tile floor, a portable soundfield system, and, when classes became more lecture based in high school and college, a student notetaker or, in a few instances, CART reporting.  Here’s the thing, though – I would never have asked for anymore!  In fact, when Rachel first started kindergarten at our local elementary school, we didn’t even ask for anything.  She didn’t even have an IEP, and, guess what?  She did fine!  In fact, most of the children who go through the Auditory-Verbal Center of Atlanta as my girls did do not have IEPs or accommodations.  When Rachel was in first grade, her teacher used each week’s spelling lists to teach phonics.  Thus, her early lists consisted of “at” words, such as mat, bat, rat, sat, etc, and “et” words, such as met, bet, set, get, etc.  The teacher would give the test walking around the classroom.  For Rachel, who only had one CI at the time, this became an impossible task.  The teacher recognized this and asked the classroom aide to give her the spelling test one-on-one in the cafeteria.  She was also fine with Rachel getting up and moving to another seat if she needed to in order to hear better.  She let Rachel know that it was fine for her to just get up and move, that she didn’t have to ask permission.

When Rachel entered 4^th grade, she moved to a new school.  It was a private school with two full teachers and a class of about 20 students.  Often, one teacher would teach one half of the class while the other students worked at a few different centers with the other teacher overseeing that group.  Rachel had difficulty hearing the teacher over the noise of the kids talking at the centers.  Thus, we purchased a soundfield system for her, which helped greatly.  We opted to purchase the soundfield because Rachel demonstrated a need for additional help, and we responded promptly.

Another issue is special ed.  As Amy mentioned, children learn much language from their peers in preschool.  Furthermore, when they learn language from their peers, they do so naturally.  In addition to the language, they learn normal speech inflection, idioms, and social interaction. If they are placed instead, in a self contained classroom, much of the benefit of language learning from their normally hearing peers is taken away.  If they are pulled out for lots of speech therapy, they also lose some of this.  In addition, having seen Auditory-Verbal therapy vs. traditional speech therapy firsthand, I can say that much of how they learn speech in traditional speech therapy often does not result in natural sounding speech.  There are absolutely times when speech therapy is necessary.  It was with Jessica who had apraxia and with Rachel who had weak tongue muscles and so had to have a deviate swallow corrected, which was also affecting her tongue tip sounds.  However, we were quick to put each sound back into the auditory once it was mastered.  While we all want our children to have clear, natural sounding speech, we need to recognize that most children born with normal hearing develop clear speech through listening and exposure.  Our goal, then, should be to teach our children how to hear and listen optimally plus good role models of their peers with normal hearing so that they, too, can develop speech naturally.

My girls, especially Rachel, were implanted at much older ages than children are being implanted today, and they started with older technology.  Yet, they have managed not just to keep up with school but to succeed beautifully.  I think that, before parents start requesting acoustical tiles on floors and ceilings, carpeting, lots of speech therapy, etc., they need to sit back and look at their child and ask themselves what their child really needs.  Asking for everything and anything simply because it’s available isn’t the best strategy and could very well backfire and produce negative results.  Believe in your children and what they are capable of with their CI or residual hearing.  They can and will amaze you and they deserve a chance to do so and, more importantly, to enjoy childhood and their time in school as freely and as normally as possible.

Amy: Once that harm is done and time has passed (by sequestering a deaf child), it often becomes “too late.”  It becomes too late to learn to listen, too late to become fluent in the language of the peers and community at large, and too late to catch up to same-aged peers educationally.  In reports about special schools (both oral or ASL based), it becomes clear that a huge portion of the day is about the topic of language, rather than simply about the things which other kids are learning… math, literacy, science, social studies, etc.  Every hour that is spent on speech therapy  is an hour taken away from content learning.  It’s no wonder that kids in deaf schools routinely score very low on state testing.  Proponents of those schools complain that it’s not done in “their language” or that it uses oral instruction which is difficult, but isn’t that what ALL OF LIFE will be like?  It will not get easier when one is in college or employed.  Becoming comfortable with real life and the language of the community is crucial to being well-educated and employed.  Perhaps some parents don’t have those goals; they are two of the top goals which I have for mine, along with being a kind, ethical person.

At this very moment, my hearing, 12 year old son is playing with his 3 year old, implanted brother… here is what they are doing:

Starting in the bed, Alex declares that there is a FIRE!

He says, “When there is a fire, you Stop, Drop and Roll.”  (12 year old drops to the carpeting, showing his brother.)

Oliver, excited, drops to the carpet and imitates his brother.

“Then, you crawl out of the room, like this, so the fire won’t hurt you…”

Oliver squeals with delight, and says “Let’s do it again!”

(They talk about it, and perform the act again.)

How many life lessons do my deaf children learn every day from their siblings and friends?  What ones are crucial?  Can you put a price-tag on the important information which they convey?  Never!

Melissa: One caveat to this is, of course, those children who are diagnosed as deaf at a later age or who don’t receive a cochlear implant until a later age.  Certainly, these children are not going to have language that is caught up to their peers by kindergarten, and, thus, more accommodations may be necessary.  However, these accommodations should still not interfere with their developing their learning to listen skills.  Rachel was one such child.  She entered kindergarten with a 4-year-old language level, and yet we still only asked for and received those accommodations for which there was a demonstrated need.

(ADDED 5/28)

Additional research which mentions benefit of mainstreaming:

Audiol Neurootol. 2009 May 15;15(1):7-17. [Epub ahead of print]
Earlier Intervention Leads to Better Sound Localization in Children with Bilateral Cochlear Implants.

Van Deun L, van Wieringen A, Scherf F, Deggouj N, Desloovere C, Offeciers FE, Van de Heyning PH,Dhooge IJ, Wouters J.
ExpORL/Department of Neurosciences, KU Leuven, Belgium.

We present sound localization results from 30 children with bilateral cochlear implants. All children received their implants sequentially, at ages from 6 months to 9 years for the first implant and 1.5-12 years for the second implant, with delays of 10 months to 9 years. Localization was measured in the sound field, with a broadband bell-ring presented from 1 of 9 loudspeakers positioned in the frontal horizontal plane. The majority of the children (63%) were able to localize this signal significantly better than chance level. Mean absolute error scores varied from 9 to 51 degrees (root mean square error scores from 13 to 63 degrees ). The best scores were obtained by children who received their first implant before the age of 2 years and by children who used hearing aids prior to implantation for a period of 18 months or longer. Age at second implantation was important in the group of children who did not use a contralateral hearing aid during the unilateral implant period. Additionally, children who attended a mainstream school had significantly better localization scores than children who attended a school for the deaf. No other child or implantation variables were related to localization performance. Data of parent questionnaires derived from the Speech, Spatial and Qualities of Hearing Scale were significantly correlated with localization performance. This study shows that the sound localization ability of children with bilateral cochlear implants varies across subjects, from near-normal to chance performance, and that stimulation early in life, acoustically or electrically, is important for the development of this capacity. Copyright © 2009 S. Karger AG, Basel.

Melissa: I don’t think it does.  We believe that children born deaf who receive CIs and learn to hear and speak and live their lives fully in the mainstream will have a better life.  Does that make us audists?

Amy: I totally agree.  I don’t believe it does exist.  There ARE times when individuals are discriminated against based on disabilities, but that is not the same at all.  Yes, hearing is a good thing.  I don’t think that makes me anything which can end with -ist.  It’s not as if it is the same as being a racist, etc.  Human animals are meant to hear, and any time we can assist people toward that goal is good (which we have done)!  No doubt we would not think twice about loving our kids and whatever communication they used if we lived 200 or 1000 years ago… but we would always wish that they could hear, to make their lives easier.

Melissa: The issue is that easier and better doesn’t equal superior.  By that I mean that I believe that children born deaf who receive cochlear implants at a young age and learn to hear and speak will have easier lives and will have more opportunities open to them.  I don’t believe that they are superior to those who live their lives in the deaf culture, but I do believe that my girls’ lives are better than they would have been without the ability to hear and speak well.  Why else would I have put them through surgery?

I am glad that they can communicate with anyone without an interpreter by their side or without having to write back and forth.  I am glad that they could choose any school and socialize with the other students at those schools with ease.  I’m glad that I can speak to them on the phone when they are not home.  I’m glad that they can hear and enjoy music.  I’m glad that they are fully a part of family gatherings.  All of these things to me enhance their lives.

Amy: Yes, it’s easier and better.  And a recent study showed kids exhibiting greater psychological well being, even.  (Click here for the study abstract) Certainly we would wish that for our children.  I compare it to many other disabilities, both large and small… many parents would do what was necessary or possible to remove other hindrances to communication or physical freedom.  We would (and do) provide eyeglasses, wheelchairs or future biological aids for spinal cord injuries, speech therapy to allow less frustration during communication.  This list could go on and on.  We begin caring for our children in early life, and the fact that we cared enough to allow them to maximize what science allows today has nothing to do with audism!

There is a difference between thinking that someone is better/superior vs. having better opportunities or an easier life.  I do not think that a child born to more educated parents or who is living in a developed country is in any way “better” than a child born in poverty or in a country without educational opportunities.  But I do think that their lives will be easier.

These are two very different things.  And obviously, I would want to do anything humanly possible for my child to have opportunities.  I can’t personally make them a motivated individual– their achievement will be largely up to them– but I can give them the tools to make it possible.

Melissa: So then, coming back to the original question – Does Audism exist?  I do not think so, but there are those in the deaf culture who believe that it does.  I think that it is their own insecurities that cause them to believe the choice of others to value hearing and spoken language implies that they are inferior because they cannot hear and speak well.  Those of us who do value hearing and spoken language have never stated this.  We may believe that we have made choices to provide our children with a better life, but the idea that we, therefore, believe that those who cannot hear and speak are “inferior” is an idea of their own creation, not ours.

Amy: We have shown that parents do not exhibit audism by implanting kids, teaching them to speak, or by valuing hearing.  I have heard those in the deaf culture accuse random strangers of audism, too– people who are simply showing ignorance or general discrimination.  And, sometimes, it is neither of those, but practicality regarding ability to perform a job when one cannot hear.  Again, it’s not “audism” in either case.

Amy: Recently, two studies came to our attention. They highlight why Auditory Verbal Therapy continues to be the best methodology for teaching deaf children to listen and speak, if those are the goals for that child. We parents are often accused of “audism,” or of being mean-spirited individuals who focus on speech to the detriment of brain development and the “natural” language of the deaf. We are accused of being overly focused on speech and the medical model of deafness.

We see the future, and we see how easily our children have learned to speak when we utilized IT as their natural language. Rather than seeing it as cruel, we see it as offering them what they deserve– the ability to do everything that their hearing peers and siblings can do. And we see them scoring very high in tests which indicate very normal development, whether it’s higher-level French language tests, state testing for Math, tests of reading ability, and so on. We posit that their development was far more normal that it ever would have been if they had been using a manual language in families which had previously never studied that language!

Below, we discuss the studies.

Web address:
http://www.sciencedaily.com/releases/2009/03/090324111600.htm
Auditory Regions Of Brain Convert To Sense Of Touch, Hearing Loss Study Finds

ScienceDaily (Mar. 25, 2009) — Virginia Commonwealth University School of Medicine researchers have discovered that adult animals with hearing loss actually re-route the sense of touch into the hearing parts of the brain. (follow above link to read entire article)

Amy: This study is further proof that early implantation and use of the auditory pathways for auditory function is crucial in children (and adults!) with hearing loss! The rewiring, while assistive if there is no alternative, means that the auditory pathways will not utilize the new technology as well. The parents who take a “wait and see” approach with a child who is clearly profoundly deaf are allowing for this rewiring.

Melissa: This is proof of the fallacy in the argument used by many in the deaf culture that we should wait until the children are old enough to decide for themselves to get a cochlear implant. While we have known for many years now that those who were the early recipients of CIs, teens using ASL in schools for the deaf, did not succeed with them and gave them a bad reputation in the deaf community initially, this research now proves what we have seen. This combined with what research has shown for years, that the first three years of life are critical for language learning and establishing the auditory pathways, tells us that children need to be implanted as young as possible and then receive Auditory-Verbal therapy to take advantage of the implant. It also means that it is way past time for the FDA to lower the guidelines for age of implantation from 12 months to 6 months or at least 9 months.

Amy: It IS way past time. While I understand why certain babies would need to wait, based on prematurity, weight or inconclusive audiological testing, for those of us whose kids were clearly profoundly deaf (ans even without residual hearing, in our cases!) and whose surgeons felt that they were headed for surgery, the FDA approval age being lowered would assist in insurance requests. Today, it is insurance more than anything which seems to be holding the process up. We were extremely lucky in implanting Oliver at 6 months of age.

This article is also more evidence to show that mixing methodologies, while hoping for audition and speech, is the wrong way to go. Visual and touch areas CAN and DO convert those regions of the brain. With the ability of kids today to hear well and use their auditory function appropriately, the Deaf Culture extremists who insist that we ought to be using sign along with speech are uninformed about the latest research. If we wanted a purely signing child, we would sign. Our point of speaking is to develop a child who is naturally good at using speech. The goals are very different, and the outcome of mixing methodologies serves to create the so-called “failures.”

Recently, another blogger was complaining that speaking people don’t use her language in the workplace (ASL) and wondered why that is fair. The reality is that any workplace will use the language most commonly learned in that area of the world. The sheer lack of numbers of ASL using persons in the world is the reason that people don’t use that language with her, and it is clearly the reason that I do not want it to be my child’s native language. We might expect safety officers to know Spanish, but would we expect them to know Cantonese? Deaf children can and have easily learned the language of their peers and family, which is the expected outcome of using that language on a daily basis. It has not been extraordinarily difficult. My were ready and ahead of peers by age 3, thanks to early implantation.

Melissa: We also saw the difference that earlier implantation makes. In 1996, the FDA guidelines still specified age 2, but our surgeon at NYU was willing to implant Jessica at age 15 months. She was 16 months younger than Rachel was when she received her CI, and yet the difference amounted to more than just 16 months. Rachel did not graduate from AV therapy until age 10, and even then she still had a slight language delay. Jessica, on the other hand, graduated from AV therapy at age 6 with language that was age level to above. I have since seen Amy’s sons. Again, Oliver was implanted at age 6 months, 9 months younger than Jessica was, and yet he completed AV therapy at an age 4 years younger than she did. The difference that early implantation combined with AV therapy makes is exponential.

Neuropsychologia. 2008 Sep 9. [Epub ahead of print]
Visual stimuli can impair auditory processing in cochlear implant users.
Champoux F, Lepore F, Gagné JP, Théoret H.

Centre de Recherche en Neuropsychologie et Cognition, Université
de Montréal, Montréal, Québec, Canada; Ecole d’Orthophonie et
d’Audiologie, Université de Montréal, Montréal, Québec, Canada.

It has been shown that visual stimulation can activate cortical regions normally devoted to auditory processing in deaf individuals.  This neural activity can persist even when audition is restored through the implantation of a cochlear implant, raising the possibility that cross-modal plasticity can be detrimental to auditory performance in cochlear implant users. To determine the influence of visual information on auditory performance after restoration of hearing in deaf individuals, the ability to segregate conflicting auditory and visual information was assessed in fourteen cochlear implant users with varied degree of expertise and an equal number of participants with normal-hearing matched for gender, age and hearing performance. An auditory speech recognition task was administered in the presence of three incongruent visual stimuli (color-shift, random-dot motion and lip movement). For proficient cochlear implant users,  auditory performance was equal to that of controls in the three experimental conditions where visual stimuli were presented simultaneously with auditory information. For non-proficient cochlear implant users, performance did not differ from that of matched controls when the auditory stimulus was paired with a visual stimulus that was color-shifted. However, significant differences were observed between the non-proficient cochlear implant users and their matched
controls when the accompanying visual stimuli consisted of a moving random-dot pattern or incongruent lip movements. These findings raise
several questions with regards to the rehabilitation of cochlear implant users.

Amy:  The cross-modal reorganization, while a coping mechanism of the body, is not good when a person’s goal is to continue hearing and speaking with a cochlear implant or hearing aid.  Hearing impairment is a neurological disorder. Treatment needs to occur as quickly as possible!

So much of medicine is based on “best practices.” What works best for the largest number of typical cases, what have studies shown, etc. Why is AV a great first option for parents when they find out that their baby or child is deaf?

Amy: I think it’s because we know that learning to speak and hear is an integral way of being a part of the ENTIRE community. This is the first reason. If we didn’t care about that, then it wouldn’t matter what language, right?!?

Melissa: I also think that it is the language of our families. Even if Elliot and I had learned sign language, would it have been realistic to have expected both sets of grandparents, aunts, uncles and cousins to also have become fluent in sign? We live far from family, and so the cousins did not grow up being a significant part of each other’s lives, but, when they did get together they connected immediately as if they got together more frequently, and my girls were always an integral part of this interaction, something that would not have been possible if they couldn’t communicate with their cousins.

I often hear older deaf adults talk about how they felt isolated from their families and never felt a part of it. I didn’t want this for my children.

Amy: So, even if we lived many years ago and could not do AV, we may have chosen lipreading and oral methods because it was that important to us. Would we have signed, also? I have wondered that. I know that ASL is hard to learn, as hard as learning any foreign language as an adult. Would I have learned it fast enough to speak and teach in complex language to my children? I have often heard the stories of families who DID learn to sign, but only at a rudimentary level. Their kids were still isolated, and outside the immediate family it was rare to hear of people becoming fluent for the sake of a grandchild or buddy.

But today, we have extremely high functioning cochlear implants. I don’t think those who began the acoupedic methods ever envisioned how far we would have come– and how fast. No doubt they would be amazed at how quickly a child can learn to listen and speak. And how easily! If parents choose cochlear implants, the most commonsense approach is to use the new auditory skills. Why get one, otherwise? The goals of parents who get cochlear implants for young children are hoping that their child will hear and speak, and Auditory Verbal Therapy is the most likely way that this can be accomplished.

Melissa: I agree. Given today’s technologies and the successes widely experienced with these technologies, AV should be the first option for most parents if their goal is for their deaf child to learn to hear and speak. Provided the parents are committed to the time commitment and hard work early on, their children will reap the rewards.

Auditory-Verbal does not simply mean auditory and verbal.  Rather, it is the name of a well- defined approach that focuses on optimizing children’s hearing so that they can learn language auditorally rather than visually.  It is also a parent-centered approach because parents are their children’s primary language role models during the critical early language learning years.

 

From: http://www.agbellacademy.org/principal-auditory.htm

Principles of LSLS Auditory-Verbal Therapy

1.    Promote early diagnosis of hearing loss in newborns, infants, toddlers, and young children, followed by immediate audiologic management and Auditory-Verbal therapy. 

2. Recommend immediate assessment and use of appropriate, state-of-the-art hearing technology to obtain maximum benefits of auditory stimulation.

3. Guide and coach parents¹ to help their child use hearing as the primary sensory modality in developing spoken language without the use of sign language or emphasis on lipreading.

4. Guide and coach parents¹ to become the primary facilitators of their child’s listening and spoken language development through active consistent participation in individualized Auditory-Verbal therapy. 

5. Guide and coach parents¹ to create environments that support listening for the acquisition of spoken language throughout the child’s daily activities.

6. Guide and coach parents¹ to help their child integrate listening and spoken language into all aspects of the child’s life.

7. Guide and coach parents¹ to use natural developmental patterns of audition, speech, language, cognition, and communication.

8. Guide and coach parents¹ to help their child self-monitor spoken language through listening.

9. Administer ongoing formal and informal diagnostic assessments to develop individualized Auditory-Verbal treatment plans, to monitor progress and to evaluate the effectiveness of the plans for the child and family.

10. Promote education in regular schools with peers who have typical hearing and with appropriate services from early childhood onwards.

*An Auditory-Verbal Practice requires all 10 principles.

¹The term “parents” also includes grandparents, relatives, guardians, and any caregivers who interact with the child.

(Adapted from the Principles originally developed by Doreen Pollack, 1970)
Adopted by the AG Bell Academy for Listening and Spoken Language®, July 26, 2007.

 

Amy: I think most people have an idea of “oral education of the deaf” that comes from things like movies, books or TV.  We have all seen various shows with people teaching lip-reading, using hands on throats and lips, etc.  We hear laborious stories of parents spending hours teaching the production of one single sound.   For many years, without good amplification, oral education required things which were not primarily auditory in nature.  One of the biggest difference I see between oral education and Auditory Verbal therapy, specifically, is the fact that it is based on the child’s audition (not their mouth).  Contrary to what people might think, it was not utilizing cochlear implants in the early days, but hearing aid technology and residual hearing.  Even today, it continues to be based on the auditory access present in any particular child.   When audition is present, the spoken language will naturally follow.

The other main difference which I believe is of utmost importance is the fact that parents or primary caregiver are the key players of this game.  They are recognized as the person most often with the child, the person who is the most involved, and who can make the most language difference for the child.  I don’t ascribe to the “more is better” philosophy when it comes to actual time in a therapist’s office.  I DO ascribe to the “more is better” philosophy of quality time with one’s parent!  For my kids, this meant talking all the time, reading all the time, spending every possible moment communicating about our daily lives.  I hear about orally educated kids who go every day to therapy!  But what happens in the hours when they are with their parent?  To me, that is the most important question.  I don’t enjoy the driving, the waiting rooms, the scheduling… if I can do it at home– that’s the best place to be.  My Auditory Verbal therapists taught me how to do the work at home.  The weekly sessions (for a brief couple of years) were parent training for me!

Mainstreaming is the 3rd major difference.  While I homeschool, it IS mainstreaming for my child because I homeschooled his brothers before him, and have no doubt that he will re-enter a brick & mortar school (as regular schools are called) when the time is right.  He mainstreamed for preschool without an ounce of difficulty.  Being in a typical listening environment, whether it’s in the classroom, in a sport, in the arts or any facet of education… is part of real life!  It prepares kids for living in a world which is based on listening and talking.  When we go to religious education or track practice, I want to know that my child can hear the teacher and coach, knows how to speak clearly, and can advocate for whatever he needs.  Mainstreaming gives that experience.

Melissa: One of the greatest benefits of mainstreaming that I have seen my girls experience firsthand is the ease with which they learn language naturally from their peers, both through conversations and overhearing, including idiomatic expressions and expressions that are current to their generation.  I remember Rachel learning, “Sure!” in preschool, saying it with the same intonation as her normally hearing peers, and Jessica coming out with, “Awesome!” and “Whatever!”  Because they learned to hear, they have been able to pick up spoken language naturally from their peers. 

Then, there are those moments of overhearing that we wish they didn’t have!  Anyone who has driven in Atlanta traffic knows that it can be a frustrating experience.  Between carpooling her older siblings and driving to oral motor therapy in a heavily trafficked area, Jessica, who was always sitting right behind me in the car, heard my too frequently expressed complaints.  One day, when she was four years old, she reached up onto the counter only to find an empty plate, which led her to exclaim, “There are no more blueberries, dammit!”

The other advantage to mainstreaming is that I knew my girls were learning grade level material alongside their peers.  When Rachel was a baby, and we visited a high school class at an oral school, I became concerned because the material was clearly at a lower level than a regular tenth grade.  By attending our neighborhood high school, I knew that she was learning at grade level and even above in honors and AP courses.

 

Amy: Oh, the easy acquisition of phrases we wish to avoid.  Sigh!  We know that well.  Currently one phrase is “Oh my God.”  We discourage that phrase in our family but Oliver heard someone say it… whether it was other kids in the neighborhood or TV or his brothers, I can’t say!  But we have tried to replace it with “Oh my goodness.”  So now he frequently discusses this, saying “you don’t say Oh my God, you say Oh my goodness.”    In November I sent Melissa the following email: “Ollie just said to Alex: “Get your butt down here!”  UH OH…”

Elliot took the CRCT last spring with his peers from across the state, as part of the Georgia Virtual Academy (a public school).  The state testing was administered in a large room by a teacher who spoke much of the details of the information, since first graders need instructions read to them.  We could have requested accommodations, but we knew they weren’t necessary.  He sat in the front row, but he told me when I picked him up that he could hear everything.  Test results confirmed that he not only did, but that he could easily exceed all standards for 1st grade curriculum.  Historically, the non-mainstreamed kids in deaf education in our state have had difficulty with the state testing, even when it is administered with accommodations.

Both of my girls and I have always worn glasses.  Thus, in July 2006, we went together for our annual ophthalmology appointments.  It was the first year we had switched doctors, and we were seeing two new doctors at Emory, the hospital where Elliot works.  I went in to see one doctor while Rachel went into another.  Jessica was to follow Rachel.  When Rachel and I met up in the waiting room waiting for our eyes to dilate, she asked me if anyone had ever said anything before about her having a constricted visual field.  I felt my stomach drop but tried to remain outwardly calm for Rachel’s sake.  Early on, we had learned of a genetic cause of deafness, Usher Syndrome.  All of those with Usher Syndrome type 1 are born profoundly deaf with vestibular issues.  However, all those born profoundly deaf with vestibular issues do not have Usher Syndrome.  We had found many traits on my mother’s side of the family of another genetic syndrome which can include vestibular issues, and so that is what we had thought and hoped we were dealing with.  Usher Syndrome includes retinitis pigmentosa (RP), the gradual deterioration of the retina.  Most children with this syndrome are identified with RP by age 10.  However, even though the ophthalmologist we had been seeing knew that I was concerned about it, it had gone undetected until Rachel was 19.  As difficult as it had been 19 years earlier to get the news of Rachel’s deafness, learning that both of my girls had Usher Syndrome was far worse.  Only Rachel understood it at the time, and watching her crying and trying to cope with the news was the most painful thing I have had to live through.  Finding this out a month before she was to start her freshman year at a visual arts college only added to the pain. 

I called my husband, who was across the street in another Emory building seeing patients.  He left them with his physician’s assistant and called the Chief of Ophthalmology while he was on his way over, and he met us with Elliot.  While the assistants in the office where we were insisted that the retinal specialists were too busy to fit Rachel in that day for conclusive testing, it was one of the few times we used connections and let the Chief of Ophthalmology take them aside and tell them that they would fit Rachel in.  Thus, a very long day ensued, with Rachel going through an electroretinogram and a visual field test.  Both confirmed the news of RP.  What didn’t help was the retinal specialist who looked at the tests and gave us the results.  She epitomized a bad bedside manner as she yelled at Rachel, asking her how she could not have noticed that she had lost some of her visual field.   I made the decision right then and there that we were never seeing that doctor again. 

We had started out our “routine” appointments at 8:00 that morning and did not get out of Emory until 2:30 that afternoon.  While we wanted to go home and be left alone, we couldn’t because Rachel’s friend from France was on a plane all day making his way to Atlanta to spend two weeks with us, and we had to go straight to the airport to meet his flight that was landing at 3:00 p.m.  While, in some ways, having company then was difficult, in other ways it was a good thing because it forced us to go on with life and even enjoy it.  We not only toured Atlanta but also took her friend to Washington, D.C., for a few days, something only Rachel had done before, and so Adam and Jessica also enjoyed it. 

Elliot stayed behind and spent the two weeks calling every retinal expert in the U.S. to pick their brains.  He learned of the first ever Usher Syndrome conference planned for that fall and attended the conference in October.  Through the conference, he learned of one genetic mutation that causes Usher Syndrome that is classified as Usher 1f and runs in 2.5% of all Ashkenazi  Jews, which both Elliot and I are.  The gene had only been identified three years before and, therefore, even though we’d had genetic testing done twice before, our mutation had gone undetected.  At the conference, Elliot had the good fortune to meet the researcher who had our blood samples.  Although it usually takes months to even a couple of years to get results from this lab, the researcher pulled Rachel’s sample when he returned to work and called Elliot to let him know he had found two copies of the Usher 1f mutation in Rachel’s sample.  A lab at the NIH, in conjunction with a lab at the Technion in Israel, is studying our gene, and so the NIH performed DNA testing on the rest of us except for Adam.  Not surprisingly, they found one copy of the mutation in Elliot and me and two copies in Jessica.  Later testing through Harvard found that Adam is not even a carrier.  Talk about luck of the draw!  He had a 2/3 chance of being a carrier like Elliot and me but had escaped it.

One amazingly coincidental story that is worth mentioning – When I first learned of Rachel’s Usher diagnosis, I joined a few Usher and RP listservs on YahooGroups.  On one of those listservs one day, a mother wrote in.  She said she was from Ottawa and had a daughter with Usher Syndrome type 1 who was now 22 and had gotten a cochlear implant at NYU when she was four years old.  Rachel was only the 13^th child to receive a cochlear implant at NYU, and so I knew that this girl from Ottawa had to be the same one whom Judy Simser had mentioned to Lea Watson so many years before.  I emailed her mother, and sure enough she was.  Both Rachel and this girl have since connected via email and Facebook.

While Rachel struggled initially with the diagnosis, especially once her friend from France left, she once again proved her strength when she picked herself up, said that she had never let her disabilities stop her from doing what she wanted before and wasn’t going to let this latest hurdle stop her either.  She is now in her junior year at SCAD and is an outstanding documentary photographer.  You can see her portfolio online at http://rachelchaikof.com/portfolio/ .  She has continued to travel and is easily one of the most independent women I know of any age.  She has traveled by herself to several areas in France, staying with host families there, to Italy to meet a family with a son with a cochlear implant, to Australia to meet an online friend of mine who has a son with a cochlear implant, to New Zealand where she met another implant recipient, and to Israel.  She is now planning four weeks this summer in South America where she will participate in intensive classes in Spanish, which she hopes will increase her chances of acceptance into the Peace Corps after she graduates from college in the spring of 2010.

Rachel has continued to be an advocate for cochlear implants, both through www.cochlearimplantonline.com, through speaking up on other blogs and through becoming a Cochlear Awareness Volunteer.  This past December, while in Australia, she gave several talks to the employees of Cochlear Corporation about her life as a cochlear implant user.  Then, Cochlear flew her to Adelaide where she gave a talk about bilateral cochlear implants at an Auditory-Verbal center there.  Also after her freshman year of college, she won the Graham Clark Scholarship Award.  “The Graeme Clark Cochlear Scholarship Foundation recognizes the remarkable achievements of Nucleus cochlear implant recipients annually by providing tuition assistance.”    

Rachel cites her philosophy in the form of a quote, “Today is a gift.  That’s why it’s called the present.”  That is how she views her RP.  There is much promising research into an effective treatment for RP that Elliot and I follow very closely.  One particular treatment is already in phase II/III clinical trials, and our hope is to get Rachel into the next phase of clinical trials, although we don’t yet know when that will be.  There is so much promising research, including gene therapy, stem cell transplants, and drugs, that we believe there will be an effective treatment in our girls’ lifetime.  It just can’t come soon enough.  Meanwhile, Rachel and Jessica continue to live their lives from day to day, taking full advantage of all that life has to offer.

 

Jessica and Rachel, Paris, Summer 2008