Memories of Kevin

Photo of Coco with Snuka

Coco happy being Santa with Snuka by his side

March 3, 1981 – June 13, 1996

Kevin (known as Coco) is on my mind today. Nineteen years ago I was sitting in ICU at Children’s Hospital at Stanford at Coco’s bedside. He was in a coma caused by meningitis. Things happened so quickly and I was sort of in a state of shock. I sat by his side as much as time would permit, but there was nothing I could do for him other than to pray that he was not in pain and know that he was loved.

Coco happened to be a friend and classmate of Derek’s. Once therapists at Chandler Tripp School in San Jose became aware he needed to move from his foster home, they suggested to his birth father (who was still involved in Coco’s life) that he contact me. I met with him and discussed the situation and how things would need to be handled if he were to move into our home. We were not licensed for foster children, only for adoption. This would mean his father would need to allow us to legally adopt him should he come to live with us but would still be able to visit and take him places. Of course, that’s what happened.

Coco was very much like Derek physically: non-ambulatory, nonspeaking, required a feeding tube for nutrition and medications, and of course to have all his care met by others. One advantage Coco had over Derek was that he had normal hearing and that meant his communication was not limited to only people who knew ASL. Since I knew how to do all his care, thanks to Derek, many challenges of a move were already taken care of. Coco was an alert child and loved to be where the action was. He was a “people watcher”. I’m so thankful the therapists followed their hearts to make the suggestion they did to his birth father. He fit into my home with ease.

Back to the bedside at Children’s Hospital. As I sat in the dim room with tears trickling down my cheeks, the nurses made me aware his birth mother was coming to visit. Birth mother? What? I was already overwhelmed with sadness and now she was going to show up while Coco was like this? I had no idea when she saw him last but it was never after he had joined our family. The thought made me angry, you might even say a bit jealous. I couldn’t even fathom the idea of giving birth to a child and not being involved in that child’s life for year after year to come visit him while he was close to dying. If she was truly interested in him, why didn’t she make an effort to come and visit him before? It’s not like our door was locked or we wouldn’t have let her be involved in his life in some other way. Maybe it was her guilt that she was not involved in his life that led her to come that day? One thing for certain, I know that Coco knew I loved him and would not abandon him. I want to thank the nurses for letting me know and leading me out a back door while she made her visit. I don’t feel I could have handled that visit at all.

Later that evening I returned to the hospital with Ben. Some other brothers had visited a couple of days earlier as well.

After putting all the boys to bed, I slept some too. At 3:00 am I suddenly sat up in bed from a sound sleep as Coco’s name shot through my mind. Not more than a couple of minutes my phone light flashed and it was the hospital – Coco had passed. Such a strange feeling that I already knew before they called. Another beautiful child had left to join some of his brothers who had gone on before him. Peace to all of you, my sons.

Below is what I shared at his Celebration of Life service.

I will refer to you as Coco because I told you I would only call you Kevin when you made me mad. It’s difficult to believe our short time together has ended. It’s close to impossible to put my feelings into words but I know you understood my feelings as I held you in my arms last week. A large part of this writing is about group. I will be honest that I almost always saw you with a group. When you arrived in the family at your age, it allowed for almost no time for individual interaction. You were almost always included in a group. Your laughter brought joy to others. When you arrived here at the beginning of the school year, you were for the first time able to ride a bus to school with your brothers and after that you never rode alone again.

I can clearly remember the first time I met you, Coco. When you were six, on a field trip with Derek and I thought, wow, look at this beautiful child – your perfect skin, your smile. I can’t even describe how your eyes sparkled like the stars. And your shiny black hair, I envied your curly black hair, You made my heart fill with happiness. At that time I had no idea you had no permanent family to live with. You continued to be in Derek’s class for many years. You’d sit together for many lessons. Later Sean and Raymond would join you as classmates.

When Jim and I became aware you needed a home, we approached your birth father about becoming a member of our family. This was a difficult decision for him to make to allow us to adopt you and legally become an Aiken-Forderer. I know he now has no regret about that decision. I know he felt relief that you had a permanent place to live and didn’t need to more around any more. You already knew some of the boys, that helped you make the transition easier. You understood you could go to San Jose and visit your birth family there and come back to us. You looked forward to those visits.

You came to visit for a weekend before any final decisions were made about a final move here. I decided to check your feelings about the idea and if you wanted to live here. When I asked you and Derek if you wanted to be brothers, you both became so excited and started to kick and hold your breath.

Photo of Coco With Derek

Classmates, best friends, then “BROTHERS”! Coco and Derek

I scolded you that I only had one suctioning machine. That made you laugh more and made matters worse as the two of you became even more excited.

I saw a lot of growth. You were afraid of clowns, Santa Claus, and Halloween, but once you realized there were real people behind these costumes, you learned to enjoy these holidays. You loved to go places with your class at school and with the family. As you matured socially your interaction with others was great to see.

In our short time together, we went through many ups and downs with your physical health. We had some complex decisions we had to make together. You seemed to agree with most anything that would make you more comfortable and more active.

Now I won’t say you were 100% cooperative! To brush your teeth was a real challenge. You loved to take control of that issue. You became a teenager who could look right through me when you refused to answer a question. It was obvious you knew the answers!

Coco, thank you for becoming a part of our family with your cheerfulness, positive outlook for life and strong personality. You will be greatly missed and remembered for the person you are.



Following is the poem my mother wrote


Goodbye, Kevin,
Say “hello” to Heaven

Dark eyes smiling
Dark hair curling

Bright smile flashing
Bright eyes laughing

From earth you have gone
But your memory lives on

Goodbye, Kevin
It’s your birthday in Heaven.




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Note to My Readers

Dear Readers,

I’d like to take a moment to explain about my website and how all of this began. Someone suggested I develop a personal website to allow others an inside view of my family and my daily life. I was hesitant to put us out there for others to see. I consulted with my sons and asked their permission to use their photos and stories on the website. As you can see, they gave me the go ahead.

Many of you know I am not an expert in technology and depend on others to help me wade through my limited understanding computer skills. At home, I depend on my sons and some friends to lower my stress and frustration, and help me accomplish tasks when I need a hand.

However, I do want to take a moment to explain and thank my webmaster, Cathi Bouton, Marian Aiken and Cathi Boutonfor all her knowledge to put this website together. We have been friends for many years. Cathi is an ASL interpreter and teacher. Cathi has done layout for a literary magazine, presented workshops, and is a juggler. She is also a wife, mother, grandmother and the list could go on.

Anyway, I want you, my readers, to know that Cathi has done the entire layout for my website. She has provided consultation and editing, and maintains my website. While we were developing this website, Cathi was also formatting my book, DEREK. What a loyal and dedicated friend!

We are far from finished with our project. I have many more stories to add and we will do just that as time permits – between my busy schedule at home and Cathi’s equally demanding life. Recently Cathi’s family has been dealing with some medical issues that she must focus on. There may be longer periods of time between when new stories are posted. Perhaps stories will be posted in groups of two or three to be more time efficient. Once again, I would like to invite you to subscribe so you will be notified when new material is posted.

Please don’t give up on us. I’d like to thank you in advance for your patience and understanding. I am in awe when I look at the website and witness how much has been accomplished. This is beyond anything I could ever have dreamed of. It would never have happened without Cathi’s skills and encouragement.




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Remembering Ilan

IlanToday I remember Ilan as being a special and unique child. It’s been eleven years since Ilan passed away unexpectedly, but he’s still in my heart and life.

Ilan began his life with numerous strikes against him. It took more than three years to diagnose him with an extremely rare syndrome, Rubinstein-Taybi Syndrome. In spite of all his medical difficulties, he also entered the world with the ability to connect with people around him. Becoming Ilan’s mom was my first experience with open adoption and I must admit it took me some time to adjust to having the birth family of a child living in my home being so involved. However, things worked out and I can now say I appreciate the open communication we developed amongst us and I thank Ilan’s grandparents who also gave support in many ways.

Ilan still visits me, especially when I see the hummingbird wind chime moving in the Hummingbird Wind Chimebreeze. Ilan loved to gently swat at the birds and listen to the chimes. He’d put his ear as close as possible so he could hear them.

A while back I caught myself thinking Ilan was helping me. I was filling a rice pouch for a sewing project. I grabbed a funnel to pour the rice into the pouch and realized it was Ilan’s funnel with his teeth marks on the end. Ilan loved banging kitchen utensils to make various sounds.

Other things remind me of Ilan. For example, his artificial eyes are still in my bathroom drawer. I have yet to decide what to do with them. Seeing them reminds me of the time I had to call his school many years ago. Back then, I had to call through a relay operator in order to speak with others who did not have a TTY (ancient technology now that has been replaced with video phones and video relay services).

Anyway, one day Ilan came home from school and he was missing his artificial eye. I called the school through the relay operator and the secretary answered the phone. “Mary, this is Marian calling and Ilan came home without his eye today. Can you please ask the janitor to check the floor for his eye before he vacuums?” I asked. “Sure, I’ll go and ask him right now”, she responded. So, I was put on hold with the relay operator. Hold, hold, hold… I finally typed to the operator, “Oh by the way, that is an artificial eye we are looking for.” The operator typed back, “Thank God you told me that! I was gagging and gasping trying to tell this lady about an eye being on the floor!”

The janitor could not find it so I hung up. A short time later I was taking Ilan to the bathroom and felt something fall. It was his eye that somehow had gotten into his pants pocket. I once again called the school and of course it was a different relay operator. “”Mary, I found Ilan’s eye in his pants pocket. Everything is fine,” I said and hung up without further explanation. I wonder if she was gagging and gasping too?

Recently I was driving to the store and something caught me by surprise. This may sound silly but there was a truck at the stoplight missing a headlight and it made me think of Ilan and his missing eye. It was even the same headlight as Ilan’s missing eye. The front grill on the truck reminded me of Ilan’s smile. And sometimes I see his trike parked outside the Children’s Center at the church. I will stop and touch it as I walk by. What a sturdy trike for a sturdy little boy, a gift to Ilan from his maternal grandparents.

I miss his smile and hugs. I miss our silly bedtime routine and his “high fives” when he arrived home each day from school. Ilan was one of the more innocent people I have ever known. He made people feel important. I’ll never forget how he trusted me as he’d dive into my arms from the back seat in the van, vocalizing with pleasure after we’d return home from a “caramel ice cream sundae” outing to McDonald’s. I feel most honored to have been able to be his mom and to be entrusted with his care from the day he left the hospital as an infant until I gave him his last earthly kiss.

The following poems were written by Ilan’s birth brother Eric Siegel on the eve of Ilan’s death.


His laugh
That's what I remember
It was more of a giggle
Or a chuckle actually
But that is not what matters
What matters is that we will hear it no longer

He knew he was loved, that's what matters
Of that there was no question
Always surrounded by a smiling face
Always someone there to help him get by
And although I was not there all the time
I know that those who were, were happy to have him there.

Although he is not here,
His memory is.
His laughter and joy will stay with us
And all along we will remember
The love he had for us all.
Circle of Life

The twinkle is not in her eye
Instead it sheds a tear
She remembers the time she spent
Watching him, hoping, praying, crying
On his trike he would ride
In circles
Circles, Circles, Circles
With his toy piano perched on the bars
The sound would come out,
But he could not hear it

The twinkle is not to be seen
Instead she sits there crying
She can't forget the time she took
To watch him grow older
As he rode in circles
She saw how
The circle of life
Was so cruel
And she sits there,
Not knowing what to do.
But that time will soon pass,
For it is the circle of Life not death.

RIP Ilan Joseph Aiken-Forderer

Photo - Ilan’s birth siblings visit. Rebecca and Eric. Ilan was the oldest of the three.

Ilan’s birth siblings visit. Rebecca and Eric. Ilan was the oldest of the three.




Photo - same bed from infant until he passed away

same bed from infant until he passed away

Photo - Looking for more kitchen utensils to bang

Looking for more kitchen utensils to bang

Photo - Cousin Marc changing batteries in his toys as Kolya looks on.

Cousin Marc changing batteries in his toys as Kolya looks on.

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Book signing – Los Altos Library May 6, 2015

I’ve been invited to join a panel of local authors at the main library in Los Altos. This will be a first time experience for me and I might mention I’m both excited and nervous. As you can see from the flyer, these other panelists have more writing experience than I have. It will be an opportunity to learn and to experience how they present their books.

Each of us will have a specific time to introduce our books. This will be followed by a question/answer session and selling and autographing of books we will each provide.

See you there?
Book Signing Los Altos Library

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Book Signing Aftermath

It’s been seven weeks since the February recognition and book-signing event held at LAUMC. I thought I was making progress with getting a handle on my emotions until someone requested for a personalized book today that caused my heart to flutter. I had to pause and catch my breath. Why? A friend Scott was requesting a book for himself and one for a professor of his. I know the person who will receive this autographed book. Of course I’ve known many of the people for whom I have autographed books and written numerous personal notes. Why was this morning different? The impact of all this registered in my mind knowing the profession of whom would receive the book and her influence upon those who she serves in her chosen field.

Let’s backtrack a bit. February 8th ended up to be an overwhelming and humbling experience for me. The weather was horrendous with heavy rain most of the day. For me to grasp how many people ventured out in the weather for the event, [especially one son, Dustin, who came over highway 17 from Santa Cruz and got stuck behind a six-car accident,] was humbling.

Some special guests arrived and this set me a jitter. Soon I began autographing books. I was then ushered to a table in the front and Pastor Mariellen began with her “sermon on Marian Aiken.” I didn’t have Kolya beside me to hide behind like I did during the morning worship service. I humbly and politely paid attention to her kind words. Sadly, our guest speaker, Rev. John Dodson, was stuck in St. Paul, Minnesota because of weather. A video created by Cindy Golden with video clips by C.J. Arnesen was shown. Now, it was my moment to stand and mumble a few words.

Photo - Marian With Editor Susan Little

Marian With Editor Susan Little

Armed with no notes and a churning brain, I was asked to introduce my guests. There was Dr. Fisher, my sister, my cousins, my niece, who was interpreting for me, nurses from Children’s Hospital, and one of Derek’s teachers who I forgot to introduce. My editor, Susan Little, and Cathi, my webpage designer and book layout person. And of course my sons. Eighteen of my sons arrived through that horrible storm. Hence I was overwhelmed, yet I felt so blessed. I had no time to visit with those who attended that day because I was busy autographing books. May I take the opportunity to thank everyone present for coming and being a part of my journey?

Long time family friend, Linda, getting a smile from Sean.

Long time family friend, Linda, getting a smile from Sean.

Aunt Lynne spending time with Rusty, Marian’s second adopted son. This photo speaks loud and clear the acceptance of Marian’s sons by her family

Aunt Lynne spending time with Rusty, Marian’s second adopted son. This photo speaks loud and clear the acceptance of Marian’s sons by her family










I definitely was not prepared for the emotions that would follow this event. For the next two weeks I felt sad, you might even say depressed. I am certainly not accustomed to having so much attention focused on me. It’s been hard for me to comprehend why others feel what I do is so special. My reason for doing what I do or writing the story I was encouraged to write by friends was not done to draw attention upon myself. Emails arrived in my inbox. Letters and cards arrived in my mailbox. All with words that brought me, and still bring me, to tears. Memories of times together decades ago touched me deeply.

I’d like to share from one letter I received from Sandy, my first social worker.

         Derek was a tiny little angel that came into your life  to help you develop and grow your own angel wings. Together you both opened the door for the other sons and brothers who shared in your life. For the other boys to be able to develop to their potential… to be all they could be. You and Derek surrounded them with your very special love and encouragement. Through your and Derek’s example, your family of boys has truly been blessed. Thank you for sharing all of this with the rest of the world in your book titled “DEREK”.

Marian with baby Derek

Marian with baby Derek

Yes, Derek was one little angel who entered my life in an unexpected way. Of course twenty-six other angels entered my life that expanded my experience of being a mom beyond what I ever thought would be possible.

At last, today as I autograph and write a personal note to Kathy, it has begun to sink in what others may see when they look at my life – the ripple affect continues to expand our circle of relationships. I pray our story will continue to ripple into the lives of others – encourage others to reach out, accept, and love, regardless of what a person’s challenges might be. Will you be a part of this ripple of love?


Marian's family and friends

Marian’s family and friends

Pastor Mariellen decided to initial chaos - “Let’s turn everyone around for a photo from a different angle, please.”

Pastor Mariellen decided to initial chaos – “Let’s turn everyone around for a photo from a different angle, please.”

The chaos begins!

The chaos begins!

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Book Signing with Marian Aiken at LAUMC

Donna, Marian and Steve prior to book signing event

Donna, Marian and Steve prior to book signing event

Guest post submitted by Donna and Steve

A book talk and signing event was held on Sunday, February 8th at the Los Altos United Methodist Church (LAUMC) during a luncheon to celebrate Marian and the release of her memoir “Derek”. The event was well attended by her church family.  Marian was happy to

Dr. Joan Fisher

Dr. Joan Fisher and Marian

introduce us to her editor, Derek’s doctor, and several members of the Aiken Family, including 18 of her sons.  All of those in attendance enjoyed seeing a brief video that captured some of the moments in a day-in-the-life of Marian and her sons. It was also special to hear Marian introduce each of her sons individually and tell us where they were born.  There were many books sold that day to people who were anxious to read Marian’s compelling story.   Another story about Marian and her sons was published both online and in the Los Altos Town Crier on Wednesday, February 25, 2015.  The online version shares a photo record of the event. In addition, a video of this event was created, and the DVD can be purchased for a small fee by contacting Cindy Golden at LAUMC.

The following photos courtesy of Los Altos Town Crier

Marian giving a brief talk. Her niece Laura is interpreting.

Marian giving a brief talk. Her niece Laura is interpreting.

Tom applauding the recognition of one of his brothers.

Marian’s son Tom applauding the recognition of one of his brothers.

Marian's son Paul and Marian cracking a joke

Marian’s son Paul and Marian cracking a joke

Marian with sons Kyle and Sergei

Marian with sons Kyle and Sergei

Marian autographing copies of Derek

Marian autographing copies of DEREK

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Challenges of Hearing Loss after College

As my teaching career at the West Virginia School for the Deaf began the fall after my graduation from Salem College, I fell in love with my job and the community of Romney. Each day my ASL skills improved and I so much needed to be in this community at the time.

Ringing in my ears (head noise) had been somewhat bothersome but suddenly a more severe kind of tinnitus became my constant and annoying companion. It disrupted my concentration and interfered with my ability to focus on conversations. I was distracted when I tried to speechread. I’m sure most of you have experienced tinnitus (head noise after a loud concert or being exposed to a loud burst of sound) that normally goes away after a short period of time. However, ongoing clicking, buzzing, throbbing, roaring, knocking, swooshing, chirping, honking, and popping noises began to cause me to lose sleep. You might say it’s comparable to someone who has migraines – only the person experiencing the tinnitus or migraine knows when it’s happening.

There are times when I feel a sharp pain, as if something has penetrated my eardrum. Sometimes the head noise would be so loud I’d go to answer the door thinking the dog was barking; only to discover he was curled up on his bed sleeping. I’ve also been known to request one of my sons to “turn down his music” only to realize the music was all inside my head and had nothing to do with what was coming through his speakers. At any rate, I was becoming emotionally stressed to the point I forced myself to schedule an appointment with an audiologist.

You’ll recall from previous posts my anxiety of hearing tests. Once inside the sound proof booth I could hardly complete a hearing test. The tinnitus was so loud and ongoing I could barely tell if I was responding to the head noise or to sound being presented through the headphones. The audiologist could tell though when I clicked the button to indicate I had heard something but no sound had been fed through the headphones. He tried to retest me using an open field test, sending sound through speakers and not using headphones. Still the results were dismal and at the age of 22 I had a profound loss in all frequencies. In other words, I went from being in the hard of hearing range to being deaf. I was fit with a powerful hearing aid, a body aid type.

I tried to wear my new hearing aid as much as possible to help cover up the tinnitus. In fact, at that time it was my primary reason to wear the hearing aid and not so much as to hear actual sounds. My comprehension of speech was only 3% with hearing only (no speechreading). The hearing aid did allow me to hear environmental sounds but many sounds I could not recognize. As soon as the hearing aid came off, the tinnitus took over. It was suggested I stop drinking beverages with caffeine, cut back on sodium intake, sleep in a sitting position, and meditate. Meditate? No way was that going to happen with all this loud, piercing noise in both ears that didn’t match in pitch or rhythm in any way. Some sounds were high and others low. It was a discordant symphony that never stopped.

Marian playing her French Horn at the Arts Weekend at Los Altos United Methodist Church. This was the very last time Marian played the French Horn.

Marian playing her French horn at the Arts Weekend at Los Altos United Methodist Church. This was the very last time Marian played the French horn.

I began to withdraw from social events, unless others present used ASL. I could no longer follow TV programs and captions were not an option at that time. I couldn’t use a telephone. Likewise TTYs and email were not yet available. Worse was that I could no longer find emotional release and pleasure with my beloved French horn.

However, I was so fortunate to be living in a community that accepted me and allowed me to learn their language and mode of communication. For the most part, I felt accepted in this community even though I had been raised in a different culture. I know it’s been many, many years and long overdue, but I’d like to thank the Deaf community in Romney for the love and acceptance you showed me.

During two summers I attended graduate school at Western Maryland College and for the first time I had the experience of using ASL interpreters in the classroom. Oh my, what a difference this made! I was now able to follow the lectures and discussions. I’m amazed that I had gotten through Salem College without such support. As my ASL skills improved, likewise did my vocabulary and language skills grow. My reading level soared. Where I had lost one enjoyable activity (music), I found a new leisure – reading. For the first time I can remember, I began to search out bookstores and buy five or more books at a time. Never in my life would I have ever thought I could enjoy reading.Marian reading

Today I no longer play my French horn. I can’t distinguish the melody of new music in church. I’ve not lost my creativity though. As I watch the interpreters, I comprehend the lyrics and “feel” the rhythm. However, I create in my mind a melody of my own and frequently create a song with harmony. I have no idea how the mind does this, but it happens for me.

My speech remains about the same as it was when I was hard of hearing. There are advantages to having intelligible speech but there are disadvantages too. Many times people refuse to accept that a person can’t hear if their speech is mostly clear. I’d like to share a personal experience.

I was traveling from my brother’s home in Ohio to my home in West Virginia when I unexpectedly ran into a severe storm. I pondered what to do, whether to continue on to West Virginia or stop by my aunt and uncle’s home in Pennsylvania to spend the night. I saw a police car at a gas station and decided to pull over and ask if they could help me make a phone call to my aunt. The policeman handed me his phone and told me to make the call myself. I explained that I couldn’t hear on the phone and needed assistance and begged him to please help me make this call. He insisted that since I could talk, I certainly could hear on the phone. That was far from the truth. I gave up and drove away with feelings so hurt that I can’t even think of words to describe them here. I know this is an extreme example and it has not happened often but something for the public to be aware of.

One question that people frequently ask when they first meet me, “What country are you from?”

“No, I’m not from a foreign country with an accent. I simply couldn’t hear everything and my speech is a bit different. Let’s just move ahead with our conversation,” I’ll respond.

Today, I continue to experience severe and constant tinnitus and wear hearing aids “selectively”. I still speak, speechread, and use ASL to communicate. And no, I’m not from a foreign country. I’m not angry or depressed about my deafness and I feel comfortable with decisions I’ve made on how to live with my hearing loss.

What about you? I’d love to hear your experiences with hearing loss, or confusion about your great speech even though you’re deaf, or passions you’ve given up and new ones you’ve learned.

If you enjoy reading these blog posts, please consider subscribing to my RSS feed. Check out the top right hand corner of this reflections page to subscribe so you’ll get notified when something new is posted.








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Challenges of Hearing Loss in College

During my senior year in high school I had planned to attend a trade school to study musical instrument repair. I had spent hours maintaining my French horns and also other brass instruments for the band. I found it fun and relaxing. I had been accepted into a school to become certified in this trade and I was excited about going. Until… one day my brother answered the phone and the caller was asking if Marian was a female or male. Sadly we learned the school was an all male school. My dreams evaporated in one phone call.

As mentioned in an earlier post, my grades were not something to be proud of. Nor the scores on my SATs. At that time, state colleges weren’t accepting many students with severe hearing losses. Gallaudet College was unknown to me and I didn’t know any sign language. I worried nonstop about what I would do once I graduated from high school. Fortunately, a friend of my father’s recommended a small college in West Virginia. With the help of my guidance counselor, I was accepted into Salem College (now Salem International University) in Salem, West Virginia.

With my things packed and loaded in the car, my parents drove me to Salem in the fall of 1968. I was petrified but determined to succeed on my own. I sat in the lecture hall during freshman orientation and didn’t have a clue what was being discussed. I followed the schedule given me, made it to all my classes on time, and struggled to keep up. My French horn was my savior as I continued to participate in band. However, I didn’t seem to be hearing sounds that I had heard before, like my alarm clock, which I had to place on an upside down cake pan to amplify the alarm.

One night, the dorm proctor had entered my room to awaken me. As she stood in the doorway I could tell she was saying something to me but couldn’t see her lips. Then I said, “Wait, I can’t hear you without my glasses.” I had slept through a fire drill and never heard the alarm. I couldn’t believe that I didn’t hear that alarm and when I made the statement I couldn’t hear without my glasses, the others in my dorm joked about the statement which wasn’t funny to me at all.

When I depend on speechreading to understand, I use many strategies to derive accurate, or sometimes inaccurate, information. One skill is to be able to think ahead of what the speaker might say. I’m known for this but sometimes it’s not the best route to go. I also take into consideration the topic being discussed and cues from the environment. I noticed I was becoming more confused or missing correct details when one evening I was the only person from the college church group standing outside the Van Horn School in Salem waiting to go Christmas caroling. I later learned that the group was meeting at Carol Van Horn’s house to go Christmas caroling. I had understood key words but not the correct information.

It became more and more difficult for me to comprehend what was being said. The vowel sounds that I had depended heavily upon, along with speechreading, were now not audible to me. American history was a required class. You’ll remember history was not one of my favorite subjects, but I attended every class. I was “attentive”, tried to do the assignments, but still was failing the class.

Did I say I took studying seriously?

Did I say I took studying seriously?

My teacher, Mr. Bevis, was from Alabama. He had a heavy accent, slower rate of speech, and a full, black beard and mustache. I tried with all my might to understand his speech, let alone the concepts he was teaching. I didn’t know what to do. Then, one day he asked me to stop by his office after class.

“Marian, you pay attention and come to all your classes. Why are you not able to pass this course?” he asked.

With a lump in my throat, “I’m hard of hearing and I can’t speechread you with your beard and mustache,” I replied.

The next day I walked into the classroom and was startled when I saw my professor. He had shaven his mustache and beard for me. It was then I understood that Salem College was the place for me with teachers who cared about their students.

Once I was accepted into Salem, I had planned to major in humanities, but I couldn’t speechread the professor who taught most of the humanity classes. I struggled to take notes and speechread at the same time. I changed my major to elementary education and did fairly well.

Another teacher, Mrs. Zinn, asked me to stay for a few minutes after my public speaking class. She had been observant and picked up when I wasn’t able to understand discussions. She had made arrangements for the director of the Speech and Hearing Clinic to meet with me. When Mrs. Lapeer asked if I had a hearing loss, I had to admit that I did. When she asked how severe it was, I answered that I really didn’t know. Although I had had hearing tests year after year and the results were discussed, I didn’t understand what the charts meant. I never grasped the idea that my loss was progressive. Don’t ask me why I never understood because I don’t have a clue. I should have known. Mrs. Lapeer wanted my parents to send copies of my audiograms to share with her.

The audiograms arrived and I shared them with Mrs. Lapeer. Today, I clearly can see her shocked expression as she mouthed the words, “You shouldn’t be able to speak as you do.” Naturally I sat speechreading what she had said under her breath.

Why?” I wondered.

It was then that she encouraged me to enroll for a course she offered in audiology that would allow me to learn more about my own hearing challenges. I was still trying to make it on my own without special preferences but she convinced me to write a form letter that would be given to my instructors to make them aware of my hearing loss. I never referred to myself as deaf at that time because I honestly didn’t feel I was. However, my audiogram was showing a severe loss in the two lower frequencies I once had heard in the normal range, and a profound loss for all other frequencies.

Marian receiving her diploma from Dr. Duane Hurley, President of Salem College

Marian receiving her diploma from Dr. Duane Hurley, President of Salem College

Armed with my letter, some back-up explanations from Mrs. Lapeer, hours of hard work, a determined attitude on my part, and my faithful French horn that had been my mainstay for so many years, I was able to complete the requirements for my degree in education.

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Challenges of Hearing Loss in Junior-Senior High School – Part Two

I continued to struggle in academic courses regardless of sitting in the front of the classroom and reminding the teachers of my communication needs. My grades were average to below average in spite of of how hard I tried. However, I did excel in home economics, especially in the areas of sewing and nutrition.

During my senior year, the home economics teacher encouraged me to enter an experiment in the regional science fair. My project was focused on properties of man-made fibers (fabrics). The fair was held at a high school in Bradford, Pennsylvania where I set up my project display, along with a written report. Several judges questioned me about what I had learned. I recall I had to ask some of the judges to please repeat their questions because I didn’t understand what was being said. As I stood confused and frustrated, one judge finally gave up and walked away when I asked him to repeat the question a fourth time (I didn’t have any experience at that time to ask people to write for me what I couldn’t understand). That left me bewildered but my teacher was watching from a distance and came by with some words of encouragement.

At last the stressful day was almost over. I sat on the bleachers in the large gymnasium with all the other contestants while the winners were being announced. I patiently waited for this to finish so I could leave and go home. Someone from my school got my attention and mouthed the words, “Get down there and accept your award”. Unknown to me they were calling my name as the third place winner.

Receiving science award

Receiving science award

I had no idea what I had won until all the winners has been announced and someone explained to me I had won a week’s cruise with the Navy on a research ship. I went on the cruise but honestly I had no interest in the scientific part of the trip.

Sometimes I was invited for sleepovers with classmates in my hometown. Once the lights were turned off I pretended I was asleep. I could still hear voices but I couldn’t comprehend what was being said. This was true for times when I went to church camp. Likewise, I’d become emotionally upset when everyone wanted to play the game telephone. I could feel the whispering in my ear but I didn’t have a clue what the phrase was that I was supposed to pass on to the person next to me. If I could only have leaned back and speechread the person giving me the secret message, I could have played the game with confidence.

I didn’t have a boyfriend. I was encouraged to go to dances and I went to the proms but these were activities that I didn’t really enjoy. The dance music would drown out what little speech I could hear and in the darkness of the gym where the dances were held it was impossible to speechread anyone. I felt most comfortable spending time with one friend at a time.

I held part-time jobs during my teen years – babysitting, mowing neighbors’ yards, teaching swim lessons, and lifeguarding at the local pool. The younger the babies were the better, because if they didn’t speak yet I didn’t need to worry about understanding their speech. I saved the money I earned to buy material to sew my own clothes.

During my senior high years I was a part of the community swim team. I was far from the fastest swimmer but I had a lot of endurance. During the swim meets I had to scan the area to find the starter official. If the starter was using a whistle, I watched closely to when the person exhaled to know when the race began. If the starter was using a starter pistol, I watched intently for the trigger finger to move. It was always a challenge and more times than I’d like to remember, the starter was standing behind the swimmers where I couldn’t see at all.

I loved swimming, lifeguarding, and teaching swim lessons. I taught all ages from preschoolers to adults. My mom and I would teach the adult lessons after pool hours and we enjoyed this so much. I was extremely visually observant as a lifeguard. I could tell some devilish identical twins apart and they would be upset when I sent one out of the pool for some ‘not so safe’ behaviors. They’d try to switch places but I knew them apart and they couldn’t figure out how I knew. Speechreading was the trick – one had a slightly chipped front tooth. I’ve kept this a secret until tonight as I write this paragraph.

As mentioned previously, much of my family life was centered around music. I’m sure music was a great influence on my speech development. With music, I learned rhythm, pitch, correct breathing for breath control, correct placement of my tongue for short notes, and relaxation of the muscles in the throat. I know in my gut this all carried over into my speech. I took piano lessons for nine years and did fairly well as long as I was playing the lower register on the piano, that I could hear. I sang in the church and school choirs. I usually sang alto but if Dad, my director, needed more tenor voices, I’d switch to tenor. Today I still sing when alone because my sons tell me that I need to not sing in their presence. Only Kolya doesn’t complain.

I began playing the French horn in the sixth grade. I was so short I almost couldn’t sit and hold my horn correctly. I never started on trumpet as many students do and my tone was mellow and not sharp. Other than my friend Linda, my French horn was my best friend throughout junior-senior high school.

I practiced my horn for hours a day and I had a three-octave range, meaning from very low to very high notes. Fortunately my band director, Mr. Norm Kelly, was a professional bassoonist and chose wonderful selections of symphonic music for my high school band. Naturally, this meant the French horn had great opportunities to play solos. Linda, my best friend, played bassoon and we’d play together. Sometimes I’d play my horn while riding my bike to her house. Insane I know, but that’s the sort of thing I did at times.

Me with my French Horn and medals for musicMusic allowed me to travel and meet all kinds of people. I participated in county, regional, and district chorus and band events. I was even selected for all-state band my senior year. This was quite an honor to be selected from one of the smallest schools in the state of Pennsylvania.

I traveled to four countries in South America and to the Caribbean Islands with my horn and sang with the chorus. I played a solo, Rondo from Horn Quintet, K.407 by Wolfgang Amadeus Mozart, for my high school graduation.

Playing French Horn at my high school graduation

Playing French Horn at my high school graduation

I played solos in our church. My parents never had to ask me to practice, it was something I loved to do.

How could I participate in music with a severe hearing loss? As a child, I had normal hearing in the two lower frequencies. Then, my hearing dropped to a severe loss in the middle frequencies, and profound in the higher frequencies. I could be sitting next to a flute and not hear a thing. Sometimes I could hear parts of what the trumpets and clarinets were playing and sometimes not. I matched my pitch to the lower brass instruments; the baritones, trombones, and basses. Gradually, I noticed I was hearing less and less while participating in music events. My hearing was changing and not for the better. As my father wrote, the audiologist explained that my hearing loss was progressive and would become worse. I didn’t get it. I didn’t understand and that was true even through high school.

Regardless of all the barriers I faced with having a severe hearing loss throughout my childhood and teen years, I was active. I did most everything other teenagers did – attended basketball games and football games with the marching band, traveled, worked part-time jobs, had friends, passed my driver’s test, graduated from high school, and left home to attend college.

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Christmas comes in a symphony of sound

Bells ringing clear and deep

The lowing of cattle, the bleat of a lamb, the cooing of doves, a baby’s cry

Magnificent choirs filling Gothic arches

Shouts and laughter among sleigh bells in thick falling snow

The orchestra’s noble concert sounds

The Mariachis and the Posada procession from home to home

The peal of the organ spilling out of the church into the street

Christmas winds in palm and pine

But even more eloquent are its silences

Adoration on the face of the Mother

The waxy fragrance of the Christmas rose

Worship in candlelit sanctuaries

The peace and warmth of His presence comforting the heart

Blinking luminaries along pathways and parapets

Gifts that say ‘I love you’ without words

Singing ‘signs’ of flowing hands

Memories in sweet procession

Whether your Christmas be one of sound or silence, rejoice in
This great gift of God!

Written by Mildred M. Aiken

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