Introduction

"Because of this, Matt will develop special qualities he might not otherwise have had...".

These prophetic words from my brother-in-law consoled me fourteen years ago when my fifteen-month-old son became profoundly deaf as a result of meningitis. Recently, I asked Matt what he thought were his three most outstanding qualities. Without hesitation he responded, "my sense of humor, intelligence and stubbornness!"

This is a success story of a deaf boy who is making it in the hearing world. This is Matt's story but his success is shared by numerous people who have helped us along the way.

Early Years

The pediatrician phoned me at work with the results of the brainstem test. I was prepared for a diagnosis of partial hearing loss; not "profoundly deaf". He had arranged an appointment with an audiologist, Rose Marie Davis, for that afternoon.

Recognizing that I was in a state of shock, Rose Marie gave me a list of things to do in the next week. I visited an oral and a total communication program. Deciding on the latter, I enrolled Matt and began to learn sign language. Matt was fitted with hearing aids which never benefited him and were later donated to the Lion's Club.

Rose Marie did a computer search of everything that was published about Haemophilus Influenzae Bacteria meningitis and hearing loss. One article stated that only three percent of the cases resulted in profound bilateral deafness. She encouraged me to visit House Institute in Los Angeles to investigate the cochlear implant. However, I was reluctant to do so as another article stated that in twenty five percent of the cases of deafness, partial or complete hearing returned within one year. I waited, and when Matt's hearing didn't return I went to House Institute.

After talking with Dr. William House, his associates and parents of children who had received the implant, I was convinced that this was Matt's only chance of perceiving sound. I was told that he would hear environmental sounds and be able to respond to his name. He would be able to hear speech but not discriminate it and his lip-reading skills would improve. At age two and half years, Matt became the seventy third child to receive the House/3M single channel cochlear implant. This was the beginning of his aural rehabilitation. I worked with him daily on listening activities and he went to Rose Marie weekly for speech therapy. Matt's progress was evaluated every six months at House Institute.

In the following year it became apparent that Matt could not only discriminate speech sounds, but was able to learn words without the aid of signs. His speech was becoming increasingly intelligible. Against the advice of the school district, I removed Matt from the total communication program and placed him in a private pre-school. By the time he was six years old, his receptive language skills exceeded those of his hearing peers. Some credit should be given at this point to the closed caption device for the television!

School Years

Matt attended the neighborhood school for kindergarten. He had a wonderful teacher and did well. His first grade teacher viewed him as a burden and he developed behavior problems. I placed him in an oral Hearing Impaired Program in a city twenty five miles from our house. There were ten children in his class with one teacher and one aid. Matt blossomed academically in this program for the next four years. He developed a thirst for knowledge and became an avid reader. He was gradually mainstreamed into regular classes on the same campus.

During this time the internal coil of the implant failed, requiring revision surgery. I was faced with the decision of replacing it with another single electrode or the new multi-electrode Nucleus device. After researching the issue, I opted for the single channel for several reasons; the main reason being that Matt was very successful with this device.

Matt's socialization at this time was primarily with his hearing impaired classmates at school. At home , he had a typical sibling relationship with his sister, Gina who is nine years his senior. There were no children his age in the neighborhood, so he frequently played basketball with teenagers, talked to the adults and we "imported" his classmates from all over the county to play.

Matt wanted to take karate and we enrolled him. This turned out to be an excellent choice as karate provided him with a physical outlet, developed his self esteem and taught him self defense. Because of his deafness, his other senses are heightened. His quick reflexes gave him an advantage in karate and he progressed rapidly to the level of brown belt by the sixth grade.

We moved to Irvine because of the school districts excellent reputation for mainstreaming deaf students. Matt successfully attended the neighborhood school for sixth grade. His speech was very intelligible by this time and at the Individual Educational Plan (IEP) meeting no special services were needed. He relied totally on lip- reading and audition to get the information in the classroom. For the first time, Matt had children his own age to play with in the neighborhood.

One afternoon I received a phone call from the music teacher saying that Matt wanted to play the saxophone for his music requirement! "Fine", I said, after I recovered my voice. At Christmas, his melodious rendition of "When the Saints Go Marching In" was met with thunderous applause and a few misty eyes.

On April 7, 1993, Matt received the All-Hear On the Head (OTH) device developed by Dr. William House. (Dr. Bill, to all of us who know and love this great man). (Show device and compare to 3M/House unit). Can you imagine what this meant to a budding adolescent? He was freed from his harness and the gold chain was a fashion statement! Not to mention, that his speech and hearing improved. (Refer to audiogram).

My husband, Bill, and I were very happy in our home in Irvine. Matt was successful in his endeavors. Gina was out on her own. All was well in our world. Then it hit......PUBERTY!!!

Psycho- Social Factors

This torrential gale blew in about six weeks into the seventh grade. Again, Matt was mainstreamed in the local junior high school. He began exhibiting disruptive and aggressive behaviors at school and defiant behavior at home. The principal called me at least one day a week to come and get him. He fought with another boy, spit on the computer and was disruptive in class.

We found a psychologist who had experience in dealing with hearing impaired children. He felt that Matt's "oppositional defiant" behavior was related to his non-acceptance of his deafness and his loneliness.

Although Matt was friendly with boys at school, he was not accepted into the "cliques" which form at this age level. Matt sought out friendship with an older but very immature boy in the neighborhood. We felt that this was not a good alliance and discourage this friendship which only served to fuel Matt's anger and acting out behavior.

At the suggestion of the psychologist, we called the school district requesting that Matt transfer to the junior high school which housed the county Deaf and Hard of Hearing (DHH) program so that he could be with other hearing impaired classmates. It took three IEP's, a suspension and a lawyer to get him into the county program.

Transferring to the DHH program was not the solution for Matt's behavior problems. It was the beginning of his identity crisis. Throughout elementary school, Matt's classmates had academic skills typical of hearing impaired children; excelling in math and below average in speech and language. Matt's language was superior to both his hearing impaired and hearing peers and because of this, he felt that he was smarter. Consequently, he equated "deaf" with "dumb".

Semantics became an issue at this time. Being hearing impaired in an oral program for most of his life, he is now in a total communication program where there is pride in the term "deaf". Matt does not consider himself as deaf. He refused to sign (except at lunch time with his friends), refused to watch the interpreters, continued to be disruptive in class and get poor grades. He was suspended numerous times. For eighth grade, Matt was placed in the school district's special education program which was on the same campus. This did not result in any appreciable change in his behavior.

At home, his behavior was characterized by defiance with periodic violent outbursts which frequently resulted in destruction of property. He quit going to speech therapy and karate.

During this two year period, we had Matt evaluated by doctors, psychiatrists, psychologists and neuropsychologists. We were going to family counseling weekly. Bill and I took a parenting class. Bill and Matt took a sign language class. We tried Tough Love. I was phoning people and institutions throughout the country in a quest to get some help. We had family meetings and talked about our feelings. We had behavior contracts, and both positive and negative incentive programs. We investigated alternate schools and Matt attended two private schools on a trial basis during the summer following eighth grade. Nothing we did seemed to bring us any closer to a solution or make a major impact on Matt's behavior.

During school vacations Matt's behavior improved somewhat due to decreased stress. At spring break I took him to the Central Institute for the Deaf in St. Louis, Missouri for research testing with his OTH device. Matt's ability to understand speech with his implant was assessed with a battery of recorded speech perception tests. The Word Intelligibility Picture Identification Test (WIPI) was administered. Matt was required to listen and point to the appropriate picture from a set of six rhyming one-syllable words differing in consonants (e.g. broom, moon, spoon, school, etc.). He scored fifty six percent using auditory cues alone.

Matt's receptive language was evaluated by the Peabody Picture Vocabulary Test. His score was greater than thirty three years, eight months. On the Expressive One Word Picture Vocabulary Test his score revealed a vocabulary age of greater than eighteen years.

Matt's speech was evaluated with the CID Phonetic Inventory. His average score was ninety five percent. The complete report of the CID testing is in your handout.

During the summer before high school Matt developed a friendship with a hearing boy his age in the neighborhood. We encouraged this friendship as it was a positive influence on Matt. Matt and Mitchell enjoyed playing computer games, shooting pool at the Youth Center, bowling, going to the movies and skateboarding. Matt became accomplished at using the telephone.

Matt was registered to attend University High School, the number one ranked academic establishment in the county. He was to be mainstreamed in all college preparatory classes. There would be deaf students and interpreters in the classes as well. I didn't think he was going to make it there and continued to investigate other schools to have a back up plan. My husband and I were exhausted from dealing with this situation for so long. We agreed to a "hands off" policy with Matt and we would let him "sink or swim".

In August, Matt tried out for the water polo team and made it. This had an immediate impact on his self esteem and behavior. He recognized that he was not one of the best players but that was all right with him. The physical exercise, camaraderie and sense of belonging were positive experiences which carried over into his daily life.

When classes started in September, Matt was able to control his behavior for the most part but he did little school work for the first seven weeks and was failing most of his classes. We had a meeting at school where Matt was confronted by all of his teachers. I sat there saying nothing (which was a first for me) giving Matt the opportunity to accept responsibility for his failures. He surprised everyone by doing just that; agreeing to complete his assignments, organize his schedule and work with the teachers. He had taken the first step.

At about this time, Matt began talking to me about his feelings about being hard of hearing (that's the term he settled on). He feels that he is caught between two worlds. He doesn't belong in the deaf world but is not accepted in the hearing world. He is trying to find his own place taking what he needs from both worlds. Individuation is a difficult process for all adolescents, when there's a handicapping condition involved, it is a nightmare.

The Present

Since the meeting at school, Matt worked very hard to complete his assignments and bring his grades up. His semester grades were all C's, except for a D in Science. So far this semester, he has A's in three of his classes. He's improving in water polo.

More importantly, there have been no behavior problems at school. His amazed teachers have proclaimed that he is a different person. Likewise, Matt's behavior at home is greatly improved. My husband and I are able to go out for an evening, leaving Matt home alone, without worrying. Matt continues to go to counseling every two weeks.

I have been asked on numerous occasions what caused this miraculous turn around. I don't really know. Perhaps it was a culmination of many things. I asked Matt what made him decide to do his schoolwork and change his behavior. His response was "because I want to go to college, have a successful life and play water polo"!

As I'm writing this, the phone rings. It's Jeremy, one of Matt's hearing impaired friends. Matt uses the Telecommunication Device for the Deaf (TDD) to talk to his hard of hearing friends and the cordless phone to chat with his hearing friends. He uses the relay service to call Packard Bell. Matt and Jeremy are working on a science project together. Matt completed his paper on the computer last night. His computer skills are incredible. In junior high, Matt was banned from the computer lab for breaking into the school district's security system! Matt has a Shake Awake alarm clock with auditory and vibrational cues. He manages to sleep through this most of the time. We're still working on that!

His next goal is to be able to drive a car. We've told him that he needs to have six months where he is successful in managing his anger. At present, he explodes about once a month.

Lessons Learned Along the Way

Listen, my child and you will hear. In the beginning, I knew nothing about deafness. Matt was the first deaf person in my experience. I didn't know the difference between speech and language. I thought if you put hearing aids on and that he would hear. I had a lot to learn. I had many teachers including other parents. Mostly, I learned from their mistakes. I saw parents signing without voice to their newly implanted children. I saw parents going to numerous support group meetings instead of working with their child. I knew that I had to work with Matt to develop his listening skills as I was determined that my son was going to function in the hearing world. I knew that I could not rely on others to do this so I worked with him daily for the first five years. I believe that Matt's current success is a direct result of early intervention.

Don't believe everything they tell you. They said he wouldn't be able to discriminate speech; he talks on the phone. They said he'd never get pitch; he played the saxophone. They said it's too soon to mainstream him; his language skills exceed those of his hearing peers at age six. Later, they said he had Attention Deficit Hyperactive Disorder, Oppositional Defiant Disorder, Conduct Disorder, Schizo-typal Disorder, short term memory deficit and Mania. He's an adolescent trying to figure out who he is and where he fits in.

Anyone can be a speech therapist. When Matt mastered a new sound, it was cause for celebration. Each new accomplishment was a minor miracle and brought great joy. I encouraged family members to participate in this joy. Gina brags to this day, that she taught Matt the "t" sound. It gave family members something to do other than feel awkward around "the boy". It also provided Matt a varied lip-reading experience. Don't neglect social skills training. Hearing impaired children do not pick up on the nuances of social interaction through "osmosis" the way hearing children do. They need to be taught. This was one of my biggest mistakes. I concentrated so heavily on speech and language skills that I did not put enough emphasis on social skills. It's much more difficult to teach at the junior high level.

Balancing advocacy and overprotection. When Matt first started school, a nine year old deaf boy was crossing the street to go to school and was killed by a fire engine because he couldn't hear the siren. It's normal for any mother to fear for her child's safety when he's out of her sight, but it's worse for mothers of deaf children. Everyday activities such as crossing the street, walking through a parking lot, riding a bike and skateboarding are twice as dangerous because your child can't hear the car that is going to run him over! Little by little, I learned to let go.

In restaurants, Matt would order a meal. The waitress, not understanding what he said, would look at me for clarification. I'd refer her back to Matt. His intelligibility increased the hungrier he was!

In junior high, Bill and I became advocates for Matt because of the numerous disputes with school officials regarding Matt's behavior, services provided and appropriate placement. It was a difficult chaotic time and part of the confusion was trying to find a balance between advocacy and overprotection.

In high school, Matt has a counselor who provides guidance so Matt may resolve his own problems with schedules, classes or teachers. Parenting by trial and error. There is no such thing as the perfect parent and I'm a perfect example of that! This is one point on which my son and I agree! Parenting Matt has been a lifelong learning experience. In teaching him to listen, I learned to listen to him. In teaching him to speak, I learned to choose my words carefully. I've made my share of mistakes and I am still learning.

Recently I read a book entitled, Emotional Intelligence by Daniel Goleman. His premise is that Emotional Intelligence - self awareness and impulse control, persistence, zeal and self motivation, empathy and social deftness - is more essential to people who excel in real life than their IQ. I regret that he did not write this book ten years earlier! I suppose everything comes at the right time so that we will continue to have something to learn.

The Future

Last month I was present when my five month old granddaughter got her HIB vaccine. This vaccine was developed four years after Matt had meningitis. It is given routinely to babies now and has virtually eliminated HIB meningitis in infants, one of the major causes of deafness.

Congenital hearing loss can be mitigated through the use of hearing aids and cochlear implants. Technology is advancing rapidly with new assistive devices for the hearing impaired from voice activated computers to cellular phones. The World Wide Web has opened new vistas of communication for everyone.

Public awareness has been generated by deaf people coming out of the closet and onto the stage and into the mainstream. The American Disabilities Act has brought TDDs, closed and real time caption and interpreter services to public facilities. This is just the beginning.

The issues we must now address include educating the parents and professionals throughout the global community; making assistive devices available to those who need them, dealing with the resistance of the deaf community, developing aural rehabilitation programs for home and school. We must recognize and address the psychological and social needs of the oral hearing impaired. This is our challenge for the future.

I would like to pay tribute to Dr. William House who pioneered the cochlear implant. If it weren't for him, Matt's story would be very different. He is my hero.

In conclusion, I present a message from Matt regarding his future:

"Many people ask me, "What are you planning to be when you grow up?" Well, I'm here to answer that question.

My high school days won't last, so I have planned to get all A's and get a scholarship. If I don't get an academic scholarship, I plan to get a scholarship in water polo. Let's just hope I make the varsity team! If I get the chance to play water polo in college, I'll play for the University of California Irvine.

When I get to college I don't know what I'm going to study for my major, probably aerospace engineering. I am interested in everything. I do know one thing though, whatever major I choose, it will be a science. I'll try for the doctorate degree. Whatever I do, it'll be for a global benefit."