Archive for the ‘Melissa’ Category

Are State Schools for the Deaf Necessary?

Wednesday, October 26th, 2011

Amy: A recent Washington Post article (link here:  http://www.washingtonpost.com/local/education/gallaudet-university-adjusts-to-a-culture-that-includes-more-hearing-students/2011/09/23/gIQAC3W9tK_story.html) reminded us of a topic frequently in news today– residential and other state schools for the deaf.  Are these schools still necessary or appropriate, or are children born deaf in this generation better served living at home and attending schools close to home?  While many students on campus are fluent in sign language, more are coming from public schools and spoken language backgrounds.  My first question is “Why would they go there?”  But beyond that, the larger question exists:  why is a “Deaf School” (which focuses on a signing environment) ever an appropriate placement for any student going to college?

North Dakota School for the Deaf, 1800s

Why do people go to college?  Although many would say it is to further their education, the reality is that college is usually 4 short years and should result in an adult who is ready to go for continued education or professional life.  Nowhere in the world does a completely signing environment, such as a “Martha’s Vineyard,” exist.  Students need to be prepared to communicate with the hearing world.  If their parents chose sign language as their primary language, they still need to know how to utilize assistance and technology to do that in a hearing world.  Any state university, community college or private college in the United States would have to help a student coordinate resources in order to attend.

Furthermore, we believe that this also applies to younger children.  Any small child needs to live in the culture around them.  They are not simply going live forever within the conclave of their family or small social group.  They will need to be able to figure out how to communicate their needs to the doctor, dentist, grocer, teacher, neighbor, coworkers and others.  We believe this is why cochlear implantation and learning to listen and speak via Auditory-Verbal Therapy is so important.  For the sake of this argument, we will allow for the concept that there are a certain select number of children that must use sign language as their primary language for various reasons, such as the inability to be physically implanted, delayed diagnosis, deaf family of origin, developmental disabilities, or late adoption.  We must meet those children as they are.  Within regular schools across our country, we have at the ready Teachers of the Deaf, interpreters and a huge list of technological marvels to accommodate for the IEP and allow those children to flourish with their same-aged peers.  They will benefit from the higher standards of their local public schools.  They will be held to the same benchmarks in reading, math and science… which is far from reality in schools for the deaf across the country.

Melissa: In 2008, in a post that has since been removed, Jamie Berke explored in her blog Berke Outspoken how schools for the deaf are faring when measured by state standardized testing.  Much of this data is readily available at www.greatschools.net.  She found that, at that time, at only two state schools for the deaf did students test well compared to the rest of the state, the Kansas School for the Deaf and the Maryland School for the Deaf. Only in Kansas did the students at the school actually exceed the averages for students in the rest of the state in some categories.  In Maryland, they still performed below average, although not as behind as in schools in the other states.

I decided to update this research and found that more and more schools are not reporting, which I can only surmise is not because they want to crow about their results.  At the Kansas School for Deaf High, in 2007, the last year reported for grade 7, 52% met or exceeded state standards for reading.  The state average was 86% in 2008.  In 2007, 43% met or exceeded state standards for math in grade 7, but the state average was 78%.  Similarly, for grade 8 reading in 2008, school scored 67% and state average was 82%.  Math was 38% in 2008, state average was 74%.  Only in History-Government did the schools’ 8th graders fare well at 86% vs. the state average of 81%.  The data Jamie Berke pulled appears to be from grade 11:

2007: Reading – School 77%, state 81%

            Writing – School 88%, state 76%

            Math – School 100%, state 75%

Delving further into the Kansas State School for the Deaf at http://www.ksdeaf.org/About/School%20Profile%202007-08.pdf shows that the picture isn’t completely as rosy as these numbers portray.  For example, results of the Star Reading Assessment test show that about 50% of the students at the school are behind their hearing peers at all grade levels in reading vocabulary.

The Maryland School for the Deaf is no longer included on the Great Schools website.  I did, however, peruse the results for other states.  Looking at my own state, Massachusetts, at the Horace Mann School for the Deaf – In grade 10 for English Language Arts, 0% tested proficient.  The state average was 78%.  In math, 8% tested proficient, and the state average was 75%.  Similarly, at the Minnesota Academy for the Deaf, we have Reading 14% grade 10 in 2008, 2010 state average 75%, math 8% grade 11 in 2009, state average in 2010 is 43%.  In Florida, grade 6 in 2011, Reading 3%, stage average 67%. Math 6% in 2011, state average 57%.  In New Mexico, grade 8, Reading 18% in 2009, state average 53%.  Science 0% in 2009, state average 29%.  Math 0% in 2009, stage average 41%.

I could go on in a similar manner for all the states reporting.  While I am the first one to say that all of this testing and teaching to the test that is a product of No Child Left Behind is not necessarily in the best interests of our students or the right way to educate our children, nonetheless, these test results indicate a real problem in the state of public education today in our country and, in particular, at the schools for the deaf.

It is unfortunate that there is no aggregate testing for children born deaf but hearing and speaking thanks to CIs and Auditory-Verbal therapy who have been and continue to be fully mainstreamed.  I can speak anecdotally of my own children and the children of my friends, all of whom are succeeding well in mainstream schools, performing at levels equal to or above many of their peers with normal hearing and scoring “post high school” in reading comprehension and math on standardized testing in middle school.  Many have already gone on to and graduated from competitive four year colleges and universities.

Even without comprehensive studies, though, clearly those in state government are catching on as schools for the deaf have been closing or are threatened with closure, and it’s not simply a matter of decreasing state dollars for education.  Schools for the deaf have already been closed or face substantial budget cuts in several states.  State schools in Nebraska, New Hampshire, Pennsylvania, Virginia, South Dakota and Wyoming have already closed.  According to http://nad.org/news/2011/2/nad-action-alert-preserve-state-schools-deaf, schools facing closure or funding cuts include:

  • Cleary School for the Deaf (NY)
  • Kansas School for the Deaf
  • Lexington School for the Deaf (NY)
  • Mill Neck Manor School for the Deaf (NY)
  • New York School for the Deaf – Fanwood (NY)
  • Oklahoma School for the Deaf
  • Rochester School for the Deaf (NY)
  • St. Francis De Sales School for the Deaf (NY)
  • St. Joseph’s School for the Deaf (NY)
  • St. Mary’s School for the Deaf (NY)
  • Texas School for the Deaf

In addition, in Texas the Jean Massieu Academy has been threatened with closure due to poor academic performance. http://www.star-telegram.com/2010/03/10/2031026/jean-massieu-academy-in-arlington.html Utah’s state schools are facing severe budget cuts and possibly closure http://www.abc4.com/content/news/state/story/Utah-Schools-for-the-Deaf-and-Blind-fight-to-keep/onCyBPtcTEGlLz6NBY9piA.cspx, and in North Carolina, two schools for the deaf are facing closure: http://www2.nbc17.com/news/2011/sep/22/hundred-turn-out-ask-enc-school-deaf-wilson-not-be-ar-1421788/.  The North Dakota state legislature just passed a bill mandating a transition team http://www.nd.gov/ndsd/docs/hb-1013-section-19.pdf to “Review current research and national trends in the provision of services to students who are deaf or hearing-impaired,” begin finding other sources of revenue, and explore partnering with other states because there are no longer enough students to make the school feasible.

At a time when more and more children are receiving cochlear implants as babies, are learning to hear and speak, and subsequently attend mainstream schools, learning alongside and on par with their peers with normal hearing, enrollment at traditional schools for the deaf is declining.

Can you pick out the deaf preschooler?

Also consider Gallaudet University, which has declined from 1825 undergraduate students in 1990 to 1080 in 2007.  Yet, according to http://thomas.loc.gov/cgi-bin/cpquery/?&dbname=cp112&sid=cp112s5nKF&refer=&r_n=sr084.112&item=&&&sel=TOC_640928&, Gallaudet still received $122,754,000 in federal funding for FY 2011.  Furthermore, a look at page 1 of http://www.gallaudet.edu/Documents/Clerc/2011%20KDES%20AYP.pdf shows that the vast majority of students at the Kendall Demonstration Elementary School scored in reading, math and science at “well below” or “below.”

Amy: Last, but certainly not least, we give a serious and troubling reason to avoid sequestering deaf students in deaf schools, particularly if that school is residential.  Over HALF of the deaf schools in the United States have been involved in sexual abuse scandals, as reported in 2001 by the Seattle Post-Intelligencer (http://o.seattlepi.com/national/48233_deaf27.shtml).  In addition, a 2006 study found that a whopping 50% of deaf girls have been abused (compared to approximately 25% of hearing girls) and 54% of deaf boys have been sexually abused compared to 10% of hearing boys.  Why would this be the case?  For one thing, in deaf residential schools, as we have pointed out, the educational level can be very low for students.  Students who are not educated may not have the resources at hand to speak, write or otherwise communicate what has happened to them or identify what was wrong until very much later in life.  In addition, there is the obvious issue– they cannot hear intruders approaching.  They are vulnerable simply by virtue of the lack of the hearing sense.

This hits close to home in our family.  My husband’s mother was raped by an intruder in her home… one that the police believed may have been watching and aware that she was deaf and home alone on that particular day.  Years later, when I first met her, I noticed how fearful she was of strangers, and particularly afraid of the susceptibility of door locks.  She had multiple locks installed on her home and even her bedroom door (which could have been a safety concern, and also caused some trouble at times when family members were unable to get her attention if she was in the private bathroom off of that bedroom).  She never felt quite safe in her home again.

This is not something that happened years ago and is unlikely to happen any more in our modern society.  Recent episodes have cropped up again and again:

http://www.helpstartshere.org/health-and-wellness/disabilities-real-life-story-deaf-school-abuse.html

This is not only K-12th grade, either.  Sadly, we include Gallaudet University in this list, both for poor educational scores and problems with sexual assault:

http://www.people.com/people/archive/article/0,,20108367,00.html

It’s time we bring our children home from residential schools in K-12 and allow them to attend any college which meets their educational ambitions.  No longer are residential schools a workable idea for the education of children… children who happen to be deaf.  They deserve to be present and accounted for in all of the ordinary schools across our nation… public, parochial or charter, but certainly not specifically for deaf students primarily.  Even the best “oral school” cannot duplicate the benefits of mainstreaming.  Deaf kids should be held to the same academic standards, and their teachers and administrators should be held to the same high ethical standards that all schools must meet.  Accountability, safeguards and background checks should be the norm, and parents can and should keep close tabs on the education of all of their children, hearing and deaf alike.

Babies Need Complex Language, Not Baby Signs

Monday, February 21st, 2011

Amy: When Elliot was a baby, and we were the family of a newly diagnosed deaf infant, we were told many things by “helpful” people.  One myth that kept popping up was that we could learn a handful of signs, just like the cute babies you see on the “Baby Sign” style videos.  Now, if you read about them or listen to urban mythology, baby signs are a fabulous way to keep your baby perfectly happy and tantrum free, all while communicating the most important nouns and a few verbs.  Your baby could then ask for a cookie, for milk, for a sign language DVD, and life would be calm and trouble-free, using communication for their basic needs.

Except that learning a language doesn’t actually work that way.

Recent research confirms that babies learn complex language from the adults who are using it… starting immediately in their infancy.

Babies Process Language in a Grown-Up Way

and

Baby Talk: Roots Of Early Vocabulary In Infants’ Learning From Speech

Babies need complex language in order to grow their brain normally, to do what babies should do.  The neural networks are increasing and developing at an astounding rate.  Now, babies who learn baby sign rather than ASL are getting their normal language also because their ears work and they can take in the conversations around them.  No doubt, their mothers are not silent, and they likely mouth or even speak words when they sign “cookie,” because that’s just natural. Most parents that gush about baby signs for their own children used them for a very short period, and phased it out because it’s never going to be as easy as just talking for the normal hearing mother/father.  I have yet to meet a 10 year old who signs for their basic needs due to having learned baby signs.

But I still cringe when I hear people rave about those silly videos.  First, you can’t prevent all infant discomfort, and really… should you?  Is there something to be said for learning to deal with life’s little annoyances?  Is there something going on when a baby learns that he or she needs to practice, babble, coo and finally say what he or she wants?  I think there is.  But, I’ll leave that for another discussion, because I didn’t have a hearing infant when I was first encouraged to try Baby Signs, and it appears that no one really cares that “baby sign” programs have no real research to back them up.

Deaf infants miss out on complex spoken language in most families until they are appropriately amplified.  Let me rephrase that, because it’s important.  There is an emergency for deaf babies’ brains– they cannot get the complex language lessons in MOST families.  But, you might ask, what about deaf babies in families that use ASL because their parents are also deaf or know sign language?  Oh, wait, that may be an exception.  But a very, very tiny exception, because most deaf infants are born to hearing families.  Somewhere between 90 and 95% of deaf infants are born to hearing families.

So, the rationale of the professionals and helpful people who we met were apparently affected by a similar logic that the “baby signs” people are… that you can use simplified language and still be OK with a baby.  That’s all they need.  They’re just babies.

This was the part that always seemed so obviously wrong to me, though I was just learning about infant language and development.  I had a feeling that my older boys, who had been born hearing, were developing well because we talked and read a lot to them, even as very tiny infants.  I remember that the hospital where my oldest was born actually gave out a book and sticker that said “Read to me” to the infants who were born there.  So, dutifully, I started reading to him before he could sit up and before he could do much more than eat and sleep.  He probably was read thousands of books before the age of 3, and certainly before he could use many of the words in the books.  Today, that same baby is in high school and scores very well on tests of vocabulary, grammar and reading comprehension.  I think there’s a connection.

When I heard about Auditory Verbal Therapy and how it worked, I began to look into language learning.  I realized that my suspicions were correct.  Babies need complex language from their parents very early on in order to develop normally.  For babies born to hearing parents this absolutely HAS to be in their native language, because the parent will simply be incapable of speaking in complex ways in ASL.  While one can learn a language later in life, one cannot learn it in one or even two years.  Research shows that hearing parents never exceed a preschool level of ASL, on average.  Sure, you can seek out a few in your community who use ASL, but there’s no way the child will get the same benefit without the household caregiver using that language all day long.  If you want to learn ASL for personal fun and edification, do it– but don’t think you can learn it in time to teach an infant how to use it.  The baby will grow up faster than you can sign “I love you.”

With cochlear implants or hearing aids and spoken language, deaf babies can have normal language and brain development.  This will affect their entire life, especially in the areas of education and employment.  In many ways, previous generations could only do so much to assist this… without the kinds of amplification that we have now, they were unable to do much more than use sign language or choose oral methods which were arduous and only somewhat effective.  Today, though, parents can effectively allow for normal communication when they seek immediate and appropriate amplification for their children.

Melissa: Using and developing complex language is intrinsic to Auditory-Verbal therapy.  Once our children begin to learn to listen, we work on phrases and sentences, for example multi-item directions that grow evermore complex over the years.  We sing songs, read books and recite nursery rhymes.  We speak in sentences throughout the day, which we are able to do because we are using our native language.  Our therapist worked in thematic units, systematically introducing new vocabulary through each new theme, revisiting the theme year to year to build on existing knowledge, language complexity and vocabulary.  We built scenes associated with the themes and narrated stories about them, constantly using complex language.  I remember the first time I was able to reason with Rachel.  She wanted to do something, but before we could do it, we had to do something else first.  I explained to her that first we would do x and then we could do y.  I remember seeing her little eyes light up as she caught on, smiling and repeating over and over, first this then that.

Babies have amazingly elastic brains that process complex language years before they understand the rules of language.  They use past tenses, pronouns, etc, and we can see their brains at work as they try to figure language out, saying things such as, “I builted it,” or “He runned.”  They use the articles “a” and “the” without understanding why.  Their brains form auditory impressions that go well beyond single words.  Simplifying language through the use of baby signs, which amount to single words, will not provide babies who are hearing impaired with exposure to complex language and will not contribute to their cognitive development.

Further evidence for me of the necessity of speaking to our children in our native language is that being an Auditory-Verbal parent made me a better parent to my next two children.  My son has normal hearing.  I was so used to the importance of language and working on language and vocabulary through everyday language with Rachel by the time he came along when she was almost 4 that I made him an Auditory-Verbal child without realizing it.  I would talk and narrate to him just as I did with Rachel.  I remember bringing him with me to Rachel’s Auditory-Verbal therapy session one day when my babysitter canceled.  He had just turned two years old.  He started talking, and Rachel’s therapist’s mouth dropped open at his language level, from proper use of pronouns to length and complexity of his sentences.  He is now a freshman in college, and to this day language and vocabulary remain one of his strengths and were among his highest scores on the SATs.  Thus, imparting our own complex language to our children, rather than simple individual baby signs, is how we can best serve our children whether or not they are hearing impaired.

Temporary Hearing Deprivation Can Lead to ‘Lazy Ear’

Sunday, November 28th, 2010

Article in ScienceDaily: Temporary Hearing Deprivation Can Lead to ‘Lazy Ear’

Click here to read the entire article

Amy: Even a brief period of hearing loss damages the neural pathways in children.  When a 6 month old, or 1 year old, or 3 year old child is implanted with a cochlear implant, what does this mean?  The cortical development has been damaged.  That’s BRAIN DAMAGE, folks!  How to we treat this, medically?  For many years now, Auditory-Verbal Therapy has been treating brain development problems in deaf children.

“They observed that the temporary hearing loss in one ear distorted auditory patterning in the brain, weakened the deprived ear’s representation and strengthened the open ear’s representation. The scope of reorganization was most striking in the cortex (and not “lower” parts of the auditory pathway) and was more pronounced when hearing deprivation began in infancy than in later life. Therefore, it appears that maladaptive plasticity in the developing auditory cortex might underlie “amblyaudio,” in a similar fashion to the contributions of visual cortex plasticity to amblyopia.”

Hearing loss DOES cause over-emphasis of whatever system is available.  In one-sided hearing loss, they begin to rely more and reorganize to favor the open ear.  In deaf kids, they have to utilize the visual system.

What do we do for kids who have amblyopia?  I know the answer to this because I had to do it with my son– we patch the strong eye.  It’s a bummer, as they obviously prefer that eye. But within a few days and weeks they transform the ability of the weaker eye.  In fact, ours was fixed with a few hours a week within just a handful of months because we were diligent and because Elliot was young.  Extrapolate that to kids with hearing loss– younger is better in cochlear implants, bilateral implants for kids who already have one CI, and training in their auditory system should take place routinely and should “patch”

the other system.  In the deaf child’s case, this is the visual system.  We did this with our deaf kids for the first few months of

AVT– we made sure a toy or our hand or sitting next to them rather than in front was making it difficult for them to utilize visual cues to guess what we were saying.  Within a few short months they were cured.  My boys started early and therefore finished early.

I remember with Ollie, when we corrected his amblyopia we didn’t even have to patch because we started with glasses that helped relax the strong eye and correct the weak one.  The pediatric ophthalmologist was “showing off” my child when he came back in with words to his medical students like “see what happens when you start this process early?”  He was 2.  Elliot was 5 when he patched, and it took several months rather than just the glasses.  The  correction was the fastest in my younger child.  The same thing has happened with my kids and their CI surgeons– I’ve had the surgeons introduce them to other doctors, proudly, and we’ve been a part of many studies relating to early implantation.  It has very little to do with their ability, and everything to do with the age and corrective measures taken at an early age.

“The research, published by Cell Press in the March 11 issue of the journal Neuron, reveals that, much like the visual cortex, development of the auditory cortex is quite vulnerable if it does not receive appropriate stimulation at just the right time.”

If you want your child to have highly developed auditory perceptual acuity, don’t delay.

Melissa: These research findings are evident in practice.  Initially, cochlear implants in children were FDA approved at age 2 and older.  The FDA then lowered the guidelines to age 18 months and then to age 12 months.  Surgeons are now implanting babies as young as age 5 months.  Why push this window?  As the research shows, auditory deprivation causes lasting deficits.  Children who receive a cochlear implant at age 6 months followed by Auditory-Verbal therapy are finished with their therapy more than 6 months before children implanted at age 12 months because, during the critical early language learning years, deficits and delays caused by each month without hearing are exponential.  I saw this in my own two daughters.  Rachel was implanted at age 2 years 7 months and was in Auditory-Verbal therapy until age 10.  Jessica was implanted at age 15 months and completed Auditory-Verbal therapy at age 6.  Thus, 16 months earlier implantation translated into 4 fewer years of therapy needed to develop age appropriate language.  What was particularly noticeable to me was the difference in ease of language acquisition.  Where Rachel had to be taught language concepts such as plurals, past tenses, and pronouns, Jessica picked these concepts up with ease as do children with normal hearing.  These are cognitive concepts and, thus, the effect of hearing deprivation on cognitive function is readily apparent.  The question some may ask is why not sign with a deaf child and implant later?  As this research shows, sign does nothing for the development of the auditory cortex because it is a visual language.  Thus, while it may impart language, continued lack of auditory stimulation leaves the auditory cortex vulnerable.

Disclaimer: We have no financial ties to the Auditory-Verbal Approach. We simply have firsthand experience of its benefits for our children.

Two New Important Studies Supporting Cochlear Implants for Young Children and the A-V Approach

Saturday, February 6th, 2010

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)

MEDIA RELEASE: New data shows deaf children can keep pace entering mainstream school.

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

New research gives voice to hearing-impaired children during kids E.N.T. health month

Children who have cochlear implants (CI) rank their quality of life (QOL) equal to their normally hearing (NH) peers, indicates new research in the February 2010 issue of Otolaryngology – Head and Neck Surgery.

A cochlear implant is an electronic device that restores partial hearing to the deaf. It is surgically implanted in the inner ear and activated by a device worn outside the ear. Unlike a hearing aid, it does not make sound louder or clearer. Instead, the device bypasses damaged parts of the auditory system and directly stimulates the hearing nerve, allowing deaf or severely hard of hearing individuals to receive sound. The National Institutes of Health estimate that as many as 59,000 people worldwide have received cochlear implants, with roughly half of those in the pediatric population.

Prior research has indicated that deaf children feel less socially accepted, experience more difficulty in making friends, and demonstrate greater adjustment problems than their hearing peers. The subsequent success of the multi-channel CI devices that improve speech perception and language development led researchers to look beyond speech and language performance to questions of psycho-social behaviors and adjustment.

This cross-sectional study of 88 families with CI children from 16 U.S. states used a generic QOL questionnaire. The group was then divided by age of the child when they filled out the questionnaire: an 8-11-year-old group and a 12-16-year-old group. Both parents and children were asked to fill out the QOL questionnaire, with the parents assessing their child. The study group was then compared to a control group of 1,501 NH children in fourth and eighth grades.

Results of the questionnaire revealed that overall QOL did not differ between CI and NH groups. However, examination of individual subscales revealed that 8-11-year-old CI children rate their QOL with family less positively than their NH peers. Younger CI recipients rated overall QOL more positively than the older 12-16-year-old CI group. However, the authors point out that this could be a reflection of standard adolescent behavior. Overall QOL showed a significant inverse association with age at implantation, and a significant positive correlation with duration of CI use in the 12-16-year-old group.

The authors point out that even though prior studies have assessed QOL in CI children, this study adds additional perspective to the literature, as it combines assessments by the actual CI recipients and parents, and it maps the results in context with NH children. In addition to findings about how CI children rank their QOL, the research reveals that parents proved to be reliable reporters for their children in areas where they could observe and participate.

The authors write, “For profoundly deaf children who regularly use a cochlear implant, feelings about life overall are no better or worse than their hearing peers. These findings indicate that cochlear implantation has a positive effect on certain psycho-social domains.”

Source: American Academy of Otolaryngology — Head and Neck Surgery

Obtaining a Correct Diagnosis and Becoming an Educated Parent

Monday, February 1st, 2010

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.


Health Care Reform and Cochlear Implants

Wednesday, October 7th, 2009

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

Respecting Choices

Friday, June 12th, 2009

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.

Accommodations – Why They Are Not Always a Good Thing

Wednesday, May 27th, 2009

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 47th to 50th 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 4th 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.

“Audism” – Does It Exist?

Wednesday, April 29th, 2009

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.

Research Spurs Comments

Thursday, April 2nd, 2009

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 (and 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!