Marian Aiken

Most of my classmates had adjustments to make with transitioning from elementary school to junior high. I likewise had the same and a few extra to deal with. Since my hometown, Duke Center, Pennsylvania, was small, the class size in elementary school was 15 or fewer students per grade. Each of the 1st – 5th grade classrooms had the same teacher all day. This all changed when I entered 6th grade.

For 6th grade, I moved on to Otto-Eldred Junior Senior High School. Along with my former 5th grade classmates, other 6th graders came from neighboring communities that made the class size larger, usually about 25 students per class. I had two 6th grade teachers and for the first time I had to change classes during the school day. This meant I had to learn to speechread two teachers and adjust to their different rates of speech, facial expressions, and mouth movements. It took me some time to adapt to the new circumstances.

I was also taken from class for speech therapy, which had never happened previously. I don’t remember why I never had speech lessons before 6th grade but I do remember being asked to leave the room twice a week to work on my speech (pronunciation of words, inflection, and auditory discrimination) and speechreading skills. I despised it when the therapist would cover her mouth with a sheet of paper or ask me to turn around and listen to what the she was saying without being able to speechread. I was encouraged to watch Walter Cronkite on TV with the sound turned off, and then write a report of what he discussed during his CBS Evening News program. He was one of the most difficult reporters to speechread if I remember correctly. Of course our black and white TV set with a fuzzy picture didn’t make these assignments enjoyable to begin with. I remember I wasn’t fond of speech lessons and felt embarrassed to leave the classroom. I eventually asked Dad to arrange to have my lessons before school during my senior high years, which he did.

I faced different challenges from 7th grade through my senior year. For example, the morning announcements were given over the public address system from the office. I had no idea what was being said and felt like I was missing something important. I didn’t have a clue how to handle this situation and simply sat at my desk emotionally upset.

Up to 7th grade all my teachers were females. Then suddenly, I had male teachers who wore suits and ties. I was not accustomed to speechreading people with neckties where I couldn’t see the movements in the throat. Therefore, I learned to watch the movement of the tie knot to detect the guttural consonants. I don’t think this was something I learned in speech lessons but it was a natural knack for doing what I needed to do to understand without asking for special help.

The structure of the classes was different as well. My parents and speech therapists arranged for me to sit in the front row where I could see the teacher better. That worked just fine as long as the teacher stood in the front of the room facing the class. However, many times they would roam around, talk while writing on the blackboard with their backs to the class, and frequently gave oral tests while standing in the back of the room with all students facing forward. I recall once when I made a fast exit from the classroom and to the restroom to vomit because I was so emotionally distraught. The teacher quickly followed me and asked what was wrong. “I can’t speechread when you are standing in the back of the room,” I cried. The teacher apologized and that never happened again with that specific teacher.

My grades became lower (average to below average and even failing some classes) as I progressed through high school; regardless of how much time I spent studying. I worried and studied long after my bedroom lights were turned off. I’d sneak a small flashlight under my blanket and try to do more homework while my parents thought I was sleeping. My vocabulary was delayed and I had poor reading skills. In fact, the only thing I read was required reading for my classes and with little comprehension at that. Some of my closer friends would share their class notes with me but I continued to struggle academically.

Class discussions were much of the learning experience in high school too. I missed so much of what was being said because by the time I located who was speaking they were close to finishing their comments. This was not only an issue during discussions for the entire class but also in small groups. Please, don’t get me started on history courses. I’ll just say it was close to impossible to comprehend. I learned to hate history with a passion. However, during my senior year, I discovered I should not have had to struggle so hard with history.

My speech therapist and I made a trip to visit the Western Pennsylvania School for the Deaf in Pittsburgh. I knew nothing about such a school and that day I visited a history class. For the first time during a history class I didn’t want to leave the room! The class was watching a captioned movie about whatever topic was being studied. I was in awe. I had never seen or heard of such a thing as captions. I couldn’t believe that right before my eyes were the words on the screen. Even with poor reading skills, this was such a positive experience for me. How I wished I’d had that experience earlier in my schooling. Perhaps my high school could have provided the films for me with captions. Like me, it was probably something my teachers were not aware of either and today I still am not a fan of history.

I’ll stop for now but check back later for more experiences I had while in high school. I will share more about the role of music in my life as well as some social activities.

I didn’t know. I just didn’t know I couldn’t hear things like others did. I had no idea I was missing everyday sounds. How was I expected to know? I knew no differently because I probably never had normal hearing. I most likely was born with a severe loss that went undetected for many reasons.

One reason things went unsuspected was because I had normal hearing in the two lower frequencies and that included the vowel sounds of speech. Therefore I could hear voices when people were speaking. I must have been a natural at speechreading because that is all I ever remember doing. I had no way to explain that I had to see people to know what they were saying. I don’t remember anyone ever telling me to look at them when they spoke. I just did it in a natural way.

Marian and brother Ronn

To me, my childhood was just like my siblings and neighborhood friends. We played in the snow and played games of tag. We rode our bikes and had camp-outs in the back yard. A very normal childhood as I remember.

Until…

One day I was taking a piano lesson from my mother. As she demonstrated the correct rhythm on the upper register of the piano I asked, “What do those keys up there sound like?” For years I had watched her play those keys, noticing where she positioned her hands, but never asked what they sounded like. I remember a rather confused and startled look on Mom’s face as she said, “Stop horsing around and pay attention to your lesson.” I bet it was that very moment that she finally realized what the problem was – I couldn’t hear all sounds.

Soon after that lesson I recall going for repeated hearing tests by the school nurse. I remember the nurse taking me out of my first grade classroom and into the small, rather dark, second grade cloakroom. There was a machine set on a table. The nurse would put headphones on me and instruct me to raise my hand when I heard a sound. As she explained the procedure I obviously watched how she pushed a lever and moved her hand to make the machine work. So, as she moved her hand I would raise my hand but sometimes, which became many times, I would raise my hand when she faked pushing buttons.

These sessions became more frequent and when I saw this lady come to my first grade classroom door and lead me to the cloakroom, I wanted to dash down the stairs and out the front door of the school. But, I didn’t and followed her obediently.

I remember how I hated it when she made me turn around and turn my back toward her and the machine. I didn’t know why that upset me so much then but I do now. Turning me around prevented me from cheating on the test and also prevented me from being able to speechread to understand what she was saying as she spoke one syllable words that I was to repeat. Even today as I sit and write, I become nauseated and overcome with a feeling of failure and being inferior in some way. I’m not saying that anyone in my life ever made me feel this way. It was simply an internal feeling I had and still face today as I enter a soundproof booth. Entering a soundproof booth is frightening to me.

As my father mentioned in his writing, we began trips to see ear, nose, and throat doctors. I was required to use nasal drops several times daily for years because the doctor said my adenoids were enlarged and may be the cause of my hearing loss. I had no history of ear infections that I recall, just these swollen adenoids that probably weren’t swollen at all.

The yearly trips to Pennsylvania State University for hearing tests began. This was a long drive from our home and not something I enjoyed. The doctors and audiologists would spend time explaining charts to my parents but I never understood what all those lines meant. I honestly didn’t comprehend the severity of my hearing loss nor the impact it had on my life. After all, I was just a kid at that time.

A couple of things stand out in my memory during my years in elementary school. That cloakroom for the second grade presented a new experience for me the next year. It was also used for small group remedial work. I ended up in the PINK reading group and was sent to that dreaded cloakroom. I couldn’t understand why I had to go there with some other kids. PINK is not a color I appreciate today.

Another big problem was spelling tests where Mrs. Sandberg would only speak one word to spell. Although her voice was low and rough, as I remember it, I struggled. Remember I am hearing basically only vowel sounds and not consonants. There was no way I could tell the difference, even with speechreading the teacher, between words such as man – pan, test – less, white – whine, and so forth. I definitely didn’t do well with spelling! Numbers were another drawback in math when problems were dictated and not written on the blackboard (yes, the boards were black at that time many years ago). Directions given orally like, multiply 15 x 30. Or was it 50 x 13? Frustrating to say the least.

Mrs. Dobner, my fifth grade teacher and neighbor, was a hard one for me to like sometimes. I would be so upset because she didn’t allow me play outside at recess when I refused to wear a hat during the winter. She insisted on my wearing earmuffs or something to cover my ears. By golly, that just wasn’t for me because when something like that covered my ears, it muffled what little sound I could hear. However, once again I didn’t know how to explain or she didn’t understand my reason. She was also a neighbor who I helped. I would go and help her carry her groceries. When I helped with yard work or shoveled her snow she was always making statements, “Don’t those birds sound so beautiful?” What the heck was she talking about? No, I had no idea what the birds sounded like and although they looked beautiful to me, they didn’t make a sound at all.

I was made fun of on the playground because I was a chubby kid. I was usually the last one picked to be on a team for red rover because I wasn’t all that speedy. This was normal kid stuff that had nothing to do with my hearing loss. I really don’t remember others asking why I couldn’t understand things. I had friends and I had a family who loved me and tried to support me as best they knew how. I had a home and was required to do chores as my brother and sister did. I don’t ever remember feeling slighted in my home because I couldn’t hear like my siblings. So, I think you can conclude, I was pretty much a regular kid who just couldn’t hear that well.

Several years ago many changes happened in my life. At the suggestion of a friend, I returned to a skill I had learned as a child from my grandmother that helped me to satisfy some of my needs. That skill was sewing.

My grandmother, Marian McConnell Tait, was a seamstress. She taught me at the young age of five years to sew using real adult scissors, needles, and my mother’s sewing machine. The trust she had in me to use these tools must have been great. I am so thankful that Grandma allowed me to have the experience of sewing so early in my life.

At the suggestion of this friend I began to sew again. She encouraged me to enter and sell some of my finished products in the Harvest Craft Faire at the Los Altos United Methodist Church. Sewing helped me fill a void after several losses in my life and bring in some extra income to help pay the bills. Today, I have expanded my sewing from simple aprons and hot pads to many items you will find here on my site.

Many of the things I make end up to be “one-of-a-kind.” I use what material I have collected from various places. Some items are created to use up small pieces of fabric and incorporated with larger pieces. Many are to fill specific orders. Pictured below is a sampling of what I make. For larger pictures, and to see more information, check out this Handmade By Marian page. To contact me for more information about what I can make for you, or to make an order, please use our contact page.

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I recently found the following document while going through some papers written by one of my parents, I think by my father from the writing style. I don’t recall seeing this before and I have no idea why it was written. Here it is for you to read if you desire to do so. I will follow up in another blog with my own impression of some matters discussed below. ~ Marian

The old doctor slouched on his stool as he looked in Marian’s ears, nose and throat.

“Hmmmmmm, adenoids look better.”

I felt annoyed with him. He kept us coming back every month – for what? The school nurse had recommended that we see him after she had repeated low audiometer readings on Marian. And now he seemed to have nothing better to offer than to continue the nose drops.

“But I think she is getting worse.” I finally let my irritation come through. He looked at us both and sighed.

“Yes, I am sure she is. I will tell you now that I think her hearing loss is nerve damage and will be progressive. She will probably become deaf. You can go to all kinds of doctors and spend all kinds of money, but it will all be wasted, for there is no remedy for this hearing loss.”

Then he proceeded to tell us the story of a young deaf woman of his acquaintance who managed to become successful, lead a satisfying life, and find happiness. This abrupt statement seemed like harsh treatment for a little girl and her mother, but I realize now that the old doctor was being forthright and honest, if not tactful. He suggested that to learn speechreading and have auditory training with a therapist would be invaluable and that an evaluation at the Pennsylvania State University clinic would be in order.

And so began weekly sessions with a whole series of speech and hearing therapists, and yearly trips to Penn State or other clinics for evaluation. Testing by the county school psychologist showed Marian to be intelligent but lacking in a great deal of general knowledge ­– things that most children pick up by everyday auditory exposure. For two or three years the audiological readings were discouraging, but then they seemed to level off and remain fairly constant. By this time, Marian appeared to be adjusting fairly well in school with preferential seating and consideration on the part of some teachers. This seemed to lull us all into thinking that things would probably remain this way in spite of the fact that one audiologist told us that her hearing would probably stay at this level until she was in her twenties, and then suddenly drop.

What a helpless feeling it is to be dealing with a physical condition that you can do absolutely nothing about but test and draw charts on a paper.

“There must be something you can do to repair damage or at least to avoid further deadening of the nerves,” I said to one audiologist.

He replied that there were some doctors working in this area but for this generation, you could forget it. In those days we were also cautioned against letting anyone sell us hearing aids. This was a time when unscrupulous hearing aid dealers were abundant.

No one was ever able to give us much of an answer as to the cause of this hearing loss. The only suggestion was that it resulted from high fever or serious illness in infancy. She did have measles before she was two and was quite sick. We feel that there must also have been a “deaf” gene in there somewhere. There is a long history of deafness and hearing loss with aging in her maternal grandmother’s family. Puzzling over this serves no constructive purpose, unless such a study might help someday to prevent deafness.

Never did anyone recommend that Marian attend a school for the deaf, nor did such a thought ever cross our minds. We would probably have considered it unthinkable if it had been suggested.

Fortunately for all of us, the first speech therapist who worked with Marian was a wonderful, caring woman. She called us in for a parent conference. Her words to us will never be forgotten as she said, “You must not treat this child as handicapped. You should require the same things of her as of your other children and not to think of treating her differently. Remember she is not handicapped. She is just a normal girl who does not hear well.”

This sounded like strong advice at the time. We have a child who may become deaf and we are not to favor her in any way or make allowances! Impossible! Only through the years have we come to realize the complete wisdom of that advice.

There was only one “favoritism” that we gave in to and that was to allow Marian to have a longed for dog of her own. We felt that she needed the special love, companionship, and comfort of a pet. The whole family loved Pepper, but there was no question whose dog this was.

Schoolwork was a worry for Marian. She fretted over assignments and had some reading problem. We used to say if her brother had some of her worry and she had some of his “devil-may-care” attitude, they would both be better off. In spite of this, she had many friends and seemed to enjoy school and church activities, especially music organizations. Some of her special friends would share their notes taken of films or tapes used in class. Most teachers were cooperative and caring. One even changed his method of using many tape recordings on her account. One or two forgot about the problem or failed to understand it, even with instructions from the school nurse and speech therapists.

High school days flew by and Marian became a senior. She took the SAT’s in her junior year resulting in respectable scores although not high enough to place in selective colleges. She was discouraged from trying to go to college for we felt she would have great frustrations in classes where profs dish out their lectures and tend to be indifferent to individual problems. She loved working on her French horns and Pennsylvania Department of Rehabilitation would finance her training at a school for musical instrument repair. Much to our dismay, but fortunately at about midpoint of her senior year, we learned that the school was not coeducational, so this door was closed.

In desperation, Marian sent applications to several colleges, thinking toward teaching home economics – possibly in a school for the deaf. Gallaudet College was known to us but never considered as a possibility. She had lived all her life in the hearing world and frankly, we did not think she was deaf enough to qualify. There is a higher power who knows better than we what is best. Marian’s acceptance at Salem College in West Virginia proved this to be true as it was a blessing.

Here in a smaller college there were at least faculty members who had real concerns for individual students. It happened that there was a hearing and speech specialist and teacher of audiology who took a special interest in Marian’s education. She guided Marian into working with some handicapped children, introduced her to her first course in sign language (poor as it may have been), and paved the way for her to do practice teaching at the West Virginia School for the Deaf.

It is so easy to look back and think what might have been or what you should have done, but that is futile and foolish. We live in the present and today is what counts. Two things we still regret. One was scolding Marian for not “listening” to the teacher’s assignment, so she would know what she was supposed to do. The other was refusing to buy a shirt she wanted. When she was about ninth grade level, they started the fad of printing things on sweatshirts. We saw one in a store one day that said: “I’m not deaf, I’m just ignoring you.” The shirt was gray and unattractive. We had little money to throw around. But how we wish we had bought that shirt. We continued looking for months but did not see another. If she was ready to poke at her deafness, she should have had that shirt.

One wonders how things might have turned out if Marian had been placed in a residential school for the deaf or a college for the deaf. There is one very positive reason that we are glad she attended public school and “hearing” college and that is the opportunity she had to participate in music which she so enjoyed: school band, chorus, district and state festivals, church choirs, band camp, South American and Caribbean tours with chorus and band, college band, chorus, and madrigals. We realize now how fantastic an accomplishment that this was with a severe hearing loss.

If we ever grieve over Marian’s deafness, it is that she cannot enjoy music as she once did. Or can she? When we heard that she was going to interpret “The Messiah” our hearts leaped up for joy. We know she has those lofty sounds still in her mind. Maybe she even remembers her parents singing the arias from that great work. It is our guess, in spite of deafness, she is still singing.

written by Beth Dewing

I met Marian and family at church sometime in 1994. I was looking for a church that provided ASL interpreters.  Marian had one or two boys in wheelchairs, and Kolya in tow on Sundays.  I brought my 2 younger daughters, Leah and Rachel.

After knowing the family for a few years, I started to do a few activities with her son Chris, but switched to Kolya who captured my interest. Kolya is the reason I went back to school and got my degree in Special Education. I now work in a Moderate to Severe class under a very talented teacher in Los Altos.

Kolya and I have been going out on Wednesdays for a long time now.  We typically spend 3 to 4 hours on our date. Some of our activities include: movies, shopping for DVDs, driving to construction sites and walking about, visiting different local downtown areas, and places like that.  Also specific jaunts to see the SJ Center for Performing Arts (beautiful building) and other buildings, sometimes bridges that he selects from his iPad. Lately he has been picking restaurants that he wants to check out with his iPad!

Honestly, there is never a dull moment with Kolya.

This is my friend Kolya. He is standing on the Santa Cruz Wharf. Behind him is the Boardwalk, but we gotta wait a couple of hours before they open.  My daughter Rachel is with us.

Kolya and I are standing in front of a cute little fishing boat named the Marcella, which is seeing held up by some kind of block and tackle system by its’ bow and stern.  Kolya likes architectural details in objects, especially buildings and bridges.  Boats are only somewhat interesting to him.

We take the stairs down to look under the wharf and find not only lovely architectural timbers that provide the support for the deck about, and… graffiti (a forbidden delight). There are seals near by, barking.

After walking the Wharf, we head out to the beach. He asks for his swimsuit but I did not bring suits for this trip.  He asks many times for his suit.

Kolya explores the textures of the seaweed washed up on the beach as he walks by. He puts his right foot squarely in the middle of these messy mounds of green strands.

The arcade opens up and we go in to play a few games.  Kolya does well handling the loud noise of these machines, but I know he will not last long.  Rachel finds a game that will spew out tickets for the prizes he can get.

Tada! we score 1000 tickets! Way to go!

Rachel is holding the two creatures Kolya picked out for his prizes.

The Boardwalk opens and are we ready! The first ride Kolya picks out is the the up and down Freefall.  Rachel buckles him in.

Going up, all smiles 🙂

Freefall coming down!

Going higher on the Freefall! The up/down motion is repeated many times on this ride. Kolya goes on the ride three times with Rachel.  I’m so glad she is taking him and not me!

A group photo of Beth, Kolya, and Rachel

After lunch another walk on the beach. He does not want to go home. A good trip 🙂

I thought you might like an update on blossoms of March becoming fruits of June. I’ve been picking plums and apricots and storing in refrigerator drawers as if there is no tomorrow. The trees are loaded this year.

Pears and apples will not be ready until the end of summer and fall.

Sometimes we don’t pick all the artichokes and they produce beautiful purple flowers.

Sergei has had wonderful success with his onion bed and just pulled the first onion of the summer.

However, I’ve had more frustration than success with my garden. The rabbits have enjoyed the bright yellow blossoms, squirrels have left numerous trails from meals of apricots, and gophers must have delighted in the sweetness of my zucchini roots.

This reminds me of a poem my mother wrote several years ago that I would like to share with you.

LITTLE GRAY BUNNY

Little gray bunny with cottontail white,
Why did you eat my petunias last night?
If petunia salad’s your choice, if you please,
Why eat just flowers and not touch the leaves?

My neighbor’s pansies you nibble and then,
You bit each pansy face off at the stem.
Our flowers are here to see ~ not to eat!
We didn’t plant them as your special treat.

Tonight, little bunny, you’ll have to go eat
Your flowerbed salad on some other street.
You may feel hurt and unwelcome, no doubt,
For we made a fence for keeping you out.

Little gray bunny, we love you a bunch.
Come visit us often, but please not for lunch!

~ Mildred Aiken

Last evening I met up at a local McDonald’s restaurant with an interpreter friend. Naturally, I took Kolya along to have his evening ice cream. As my friend and I were chatting, he needed to use the restroom. The first time he asked I convinced him to wait until we got home. However, about fifteen minutes later he asked again.

I gave in and took him. First, I slightly opened the door to the woman’s restroom to make certain the coast was clear. No little girls, no teenage girls, and only one lady washing her hands. Kolya did as he had been taught and walked with eyes focused forward to the larger handicapped stall. No problem that I could foresee. As soon as he finished, we returned to our table and I continued my discussion with my friend.

Suddenly my friend sort of twitched, clenched her teeth, and diverted her eyes from me. At the same time Kolya turned around to look behind him.  I turned but didn’t see any commotion behind me. I was in the dark until my friend told me there was a lady on the other side of the restaurant yelling about bringing that boy into the restroom. I’d never have known any of this was taking place had my friend not told me. My back was toward the lady and I couldn’t hear the screaming.

As the lady left McDonald’s she continued her rant with probably loud words, “You need to tell me to my face you are bringing a boy into the lady’s room.” I’m sure she was saying some other things as well which I didn’t catch. I know I replied with a statement along the line of trying to use the restroom by yourself if you had no arms.

Well, my friend got a good taste of what it is like to be in public with a physically challenged adult of the opposite gender as the caregiver. I think my friend was more upset than me. My only concern was that Kolya had to hear what this lady was saying. It’s happened before and I’m sure it will happen again during my lifetime.

Can you imagine the reaction if I had taken him into the men’s restroom and there were men using wall-hung urinals without stalls? I’d probably be arrested for being a female “peeping tom”.

The Community School of Music and Arts (CSMA) recently held a reception for students who participate in the Arts4All Program offered there. Several clients who attend the adult program at the Morgan Autism Center (MAC) enjoy the experience of being creative.

Of course, the reason I am writing this is because Kolya is one of the fortunate clients who is able to attend classes at CSMA.

The clients are transported in a school van or in staff cars from MAC to CSMA weekly. During this last session the artists were introduced to sculpting with clay. Each client made one clay project.

Kolya shaped his clay by using various tools in his mouth.

The hair was pushed through a garlic press. Then, he placed it on his sculpture.

He painted and fired his work.

The teachers exposed the students to new skills and styles. Kolya responded to the art teacher well. Meeting and connecting with new people can be challenging for Kolya because of his autism. Kolya’s assistant tells me he was more than willing to try new things and followed instructions carefully. I was pleased to learn this because more times than not, he has an idea in his head and it’s difficult to steer him to different activities. The staff at CSMA are very skilled, kind, and respectful of all students.

Most of the paintings being displayed were done in acrylic but Kolya was exposed to watercolors as well.

He would draw his outline with pencil and then paint with watercolors.

These two paintings were done for the Starry, Starry Night fundraiser for MAC. The monarch painting was sold at the auction for an incredible amount. These paintings show much growth in Kolya’s artwork. He has expanded from previous focus on bridges and buildings to things in nature and use of bright colors.

All clients received a certificate at the reception.

Kolya listened intently as the staff gave a presentation for the guests.

Kolya and Renee made silly faces because Kolya was tired of “smiling” for my camera.

Before the students returned to MAC, Kolya was able to socialize with his friend Jonathan. When they were younger, they rode the same bus and I’m happy Jonathan was already a client in the adult program to make the transition smoother for Kolya.

Thank you to all the staff at CSMA who welcome the clients from MAC and other programs that serve individuals with special needs. I’m so happy you are there to help expand my son’s art skills and I know Kolya looks forward to Monday mornings because he goes to CSMA.

(Some photos and information provided by Renee, Kolya’s MAC support staff.)

Kolya working on his butterfly drawing can be viewed at Akashic Books article “Spotlight on Artists on the Autism Spectrum.“