Archive for Hearing

Music and the Positive Side of Auditory Processing Disorder

June 11, 2011 Rachel Hearing, Sensory Processing Issues

Most of you know my challenges with my auditory processing condition: difficulties filtering sound, fatigue when trying to carry on a conversation with too much ambient noise, words getting jumbled in the midst of too many competing conversations, processing delays deriving from the visual nature of my hearing, and so on.

In general, sound always feels very close to me. If I’m in the midst of very loud sound, such as the loud rock ‘n roll music they play at the local pharmacy, I literally feel as though the sound is inside me, and as though I am inside the sound. It’s exhausting. I can’t concentrate, and it takes my nervous system some time to calm down afterwards.

Since auditory processing has been my greatest challenge, I’ve been thinking lately about whether there is an upside to my condition. Certainly, in another culture, having acute hearing would be a plus. I’d undoubtedly be the first to hear the tiger approaching the village, or to perceive some other sign of impending disaster. But in a noisy culture like our own, I hadn’t been able to see much benefit in it.

And then I started thinking about my relationship with music.

It’s not something I’ve talked about a lot, perhaps because I take it so much for granted. When I was a child, I was a classical pianist. I didn’t just play the piano. I was a pianist, performing in recitals in Boston and playing in statewide piano contests, one of which, to my great surprise, I actually won. I began playing when I was eight years old, and I was told right away that I had a lot of talent.

It wasn’t that I was more technically proficient than the next person. It’s that I was musical. I felt the music, from the inside out.

Back then, I couldn’t see what the big deal was. To me, it all came naturally, and I could never understand the fuss. But now I think I do. I had the same experience back then that I have in the pharmacy with the loud rock ‘n roll music — the music was inside me, and I was inside the music. The only difference was that the music was classical, and that the sound of the piano thrilled me. The melodies, the harmonies, the timbre, the volume — all of them were a delight to my auditory system.

I used to play Chopin and cry. I used to play Beethoven and feel as though I were communing with his spirit. It was a complete physical, sensory, and emotional experience. It took me over and spoke to my soul. It resonated through me.

As a child, of course, I thought that everyone experienced music that way.

I stopped playing the piano because I became very stressed out by all the performing. I was an extremely shy child and received no guidance for how to handle the pressure. Performing brought with it perfectionism, and perfectionism created pressure, and pressure ultimately created a lack of enjoyment.

So I turned to singing. People have told me that I have a good singing voice, but I’ve never felt that I was particularly talented as a singer, so there has never been any pressure involved. I just enjoy it, and other people seem to enjoy it, too. As an adult, I’ve mainly sung Jewish liturgical music — first as a prayer leader when the rabbi at my local synagogue was on sabbatical, then as an assistant when my husband was the spiritual leader at my next synagogue, and then as a lay rabbi when my husband and I led our own services some years back. I’ve sung at weddings, life-cycle events, and weekly services.

Whenever I sing, whether the music comes from another culture or my own, I am in the music, and the music is in me. I am in the history, the culture, the laughter, the sorrow, and the struggle of the people who came before. All of it takes up residence in my body, my mind, and my soul.

I’ve struggled with whether I’d want my auditory processing condition cured. I’ve decided that I wouldn’t. I’d lose the gifts along with the difficulties. I’ve adapted quite well to the difficulties, and the gifts are an essential part of who I am.

© 2011 by Rachel Cohen-Rottenberg

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Autism in the Classroom: Personal Reflections

April 30, 2011 Rachel Education, Hearing, Modes of Thought, Sensory Processing Issues, Speech, Visual/Spatial Skills

Earlier this month, a teacher at a school in Florida contacted me about helping with a training session. The training will take place on May 5. She wanted to get an insider’s perspective about navigating the school environment as a person with autism, and she was hoping that I would put together a video about my childhood experiences in the school system.

Of course, I said yes. I had never put together a presentation like this one before, but it was a lot of fun to do, and I’m very happy with the result.

I’ve love to hear your comments. If you are a parent or a teacher, did you find the information helpful? And if you are autistic, how do you remember your own school experiences?

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For those with visual difficulties, and for others who prefer reading text, here is a transcript of the video, slightly edited to remove references to the photographs in it:

Autism in the Classroom: Personal Reflections
A Presentation by Rachel Cohen-Rottenberg

The Lewis School
Valparaiso, Florida
May 5, 2011

My name is Rachel Cohen-Rottenberg.

I’m a 52-year-old wife, mother, writer, and artist with Asperger’s Syndrome. I was diagnosed at 50. I’m married to a wonderful man named Bob, and I have a beautiful daughter named Ashlynne.

In order to give you some insight into what your autistic students might need in the classroom, I’d like to share my memories of my years in elementary school.

I was raised in Brookline, Massachusetts. I attended the Edith C. Baker School, a public elementary school, from the second grade through the eighth grade.

I had symptoms of autism, but no one picked up on them.

As a child, I was extremely sensitive to sensory stimuli, especially sound, and I felt the emotions of the people around me acutely.

Fascination and alarm: Those two words describe the nature of most of my responses to the physical and emotional world throughout my childhood.

I did not speak a word until I was 2 1/2, but I could read when I was three years old. I taught myself.

As a child, I had great difficulty making eye contact. Even now, when I look into a person’s eyes, I have such a profound experience of the person that I feel his or her soul coming directly at me. When I was a child, looking into the eyes of another person was an overwhelming experience.

My small, very conservative school gave me the structure to indulge my fascination with the world while protecting me from the kinds of experiences that inflamed my anxiety.

At school, we had many, many rules, and they governed nearly every aspect of the school day. We had rules for how to enter the cafeteria, with whom to sit, and at which table. We had rules for how to form a line and use the proper side of the stairway. We had rules for what constituted proper school attire.

The rules created a predictable, structured environment in which I could thrive.

My school environment was very spare and quiet. We did not have all the visual and auditory distractions of today’s world — no iPods, no computers, no cell phones. All of our learning was text-based. For me, it was the perfect environment.

My teachers demanded respect from all of us. And they did an excellent job of returning it. But they were not my friends. They were better than friends. They were allies. The vast majority were kind, patient, and supportive.

My teachers created an environment in which I developed faith in myself. I could never have achieved so much without this solid basis.

As you work with your students, please keep in mind that autism is not intrinsically a condition of deficit, but of overabundance — an overabundance of sensitivity to sensory and emotional phenomena.

I spend every day living with an experience laden with perception. I hear everything very clearly, with very little filtering. My eyes are constantly taking in the visual world, in every detail: color, texture, pattern, and motion.

The intensity and acuity of autistic perception causes many of the behaviors that can be so perplexing to non-autistic people. Stimming is a way to calm our nervous systems, and it serves to block an abundance of input by creating an abundance of output. Concentrating on visual or auditory patterns allows us to bring some measure of control to our perceptions of an overstimulating world.

Living with this level of intense perception is a great deal of work. Please know that your autistic students are working very hard, all the time, to filter and process sensory and emotional information.

It may not look as though they are working hard. Please look beyond what you see to what lies beneath the surface. When you do, you will go a long way toward helping your students succeed.

Thank you so much for taking the time to watch this presentation. Please feel free to contact me through my blog, Journeys with Autism (www.journeyswithautism.com),with any questions you might have.

© 2011 by Rachel Cohen-Rottenberg

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Audiology and Neurology

February 28, 2011 Rachel Communication, Community, Disabilities, Doctors, Hearing

I had my follow-up audiology assessment on February 15, and my follow-up appointment with a neurologist this morning. I don’t have much to report in terms of answers, but I’m continuing to find insight along the way.

February 15 audiology assessment: I walked to the audiology center, which is a mile or so from my house, and I was in a state of extreme resistance the entire way. I just didn’t want to go through the testing again. It wasn’t an intellectual resistance. In my head, I was interested in knowing how things would come out. The resistance was physical and instinctive. If I were a little kid, I probably would have said, “I just don’t wanna! Please? Can’t we go home?” But I’m an adult, so I kept on walking.

There are only two aspects of my audiology assessments that I like: seeing Beth Ann (my audiologist), and sitting in the sound-proof room she puts me in for the testing.

Beth Ann is a wonderful, friendly, quiet-spoken person who seems to talk at just the right tone and pace for me. She talks very little, too, which makes her very easy to be around. She says what’s needed, and then she gets down to business. She says that she likes when I come in for testing because she gets to use her normal voice; most of her patients are elderly people who are hard of hearing, and she tends to have to speak very loudly most of the time.

And the sound-proof booth? I want one. So. Very. Much.

At this particular appoinment, Beth Ann didn’t even bother trying to talk to me in her office. She did the pre- and post-assessment interviews in the sound-proof room. She figured I’d have an easier time of it. Nice person, eh? I really appreciated the gesture.

But God, did I hate the testing! My body was in a state of major tension the entire time. I just couldn’t wait to get out of there. I saw, once again, that verbal processing—any verbal processing—is very difficult, very tiring, and in some ways, very unnatural for me. According to the latest assessment, some of my scores have gone down, and one went up slightly. Here’s the breakdown of scores since my first assessment in July of 2010:

Frequency Patterns (pattern matching)
July, 2010: Right: 100%, Left: 100%
November, 2010: Right: 100%, Left: 100%
February, 2011: Right: 100%, Left: 100%

Compressed Speech (fast speech)
July, 2010: Right: 52%, Left: 48%
November, 2010: Right: 52%, Left: 48%
February, 2011: Right: 36%, Left: 36%

Speech in Noise
July, 2010: Right: 68%, Left: 80%
November, 2010: Right: 30%, Left: 20%
February, 2011: Right: 36%, Left: 40%

Dichotic Digits (integration of sound binaurally)
July, 2010: Right: 93%, Left: 90%
November, 2010: Right: 65%, Left: 28%
February, 2011: Right: 50%, Left: 25%

Except for my apparently ceaseless ability to do pattern matching, all of my scores are still in the Poor range. The good news is that they haven’t dropped as significantly as they did between July and November of last year, and I’m grateful for that. No one has ever suggested that my hearing will ever be normal, so I didn’t go in expecting miracles.

After the testing, Beth Ann asked whether I had any questions or concerns. My mind was kind of blank at that point, except for fact that I was cognizant of the huge enchilada in the room—the huge enchilada that is so large and so ever-present that I often can’t even register that it’s there.

So, I said, “Yes, I have a concern. How am I supposed to live my life this way?”

It wasn’t as pitiful as it sounds. I didn’t mean, “How am I supposed to get up in the morning?” I meant, “I don’t have a road map here. I do my best to understand what’s going on with my hearing. I take adaptive measures. I advocate for myself. But I feel like I’m doing it in a vacuum. If I were Deaf, I’d have a community to guide me. But I’m completely on my own here, and it’s very difficult.”

She was very kind, and she said that she’d talk with some people at Austine (the local school for the Deaf and Hard of Hearing) and see whether there might be any services or guidance for me. Later on, it occurred to me that there’s a crucial service that she can help me find: counseling from a Deaf practitioner. I need emotional support from someone who isn’t going to give me well-intentioned but useless advice. My last therapist told me that, of course, people wouldn’t approach me because, by blocking my ears, I was communicating that I didn’t want to communicate. I tried to explain to him that, um, no, I was blocking my ears to protect them, and that I wasn’t communicating a thing, except that I have a problem with my hearing. You can guess how that went. It was like saying, “You know, sometimes a cigar is just a cigar,” and being told I was in denial.

I don’t need to listen to that kind of thing anymore. In fact, what I need is a therapist who can help me deal with the exhausting, mind-numbing, crazy-making cluelessness implied by that kind of remark.

And I need someone with whom I can sit and text during appointments and not talk at all. I remember when I used to see my Deaf counselor at Voc Rehab. We’d sign a little and then write back and forth, or use the Ubi-Duo. After awhile, finding employment became secondary to just being in the same room with someone who wasn’t going to exhaust me. It was so peaceful. I came out feeling full instead of empty.

When I emailed Beth Ann about my idea of finding a Deaf therapist, she wrote me back and said, “Wow! I was just thinking the same thing!”

I’ll keep you posted about my progress in this area.

Today’s neurology appointment: Back in November, when my audiology scores plummeted, my audiologist strongly suggested that I see a neurologist “to get to the bottom of it.” I got an MRI right away, which showed nothing wrong. I also scheduled an appointment at Dartmouth-Hitchcock for February 2 (the first available one), but there was a blizzard that day and driving was out of the question. So I decided to see someone in town, figuring that even in a blizzard, I could walk.

The neurologist was lovely. I had gone expecting some high-powered, well-dressed doctor who would rush me mercilessly through the appointment. Instead, she was a very calm older woman dressed in a button-down shirt and corduroy pants that were balding in several spots, and she let me take my time. She did a bunch of testing and basically said, “I don’t see a thing wrong with you—except for the auditory and other sensory issues, that is.” My core muscle strength is good, my coordination is good, my balance is good, and nothing seems to be structurally wrong. She ordered some bloodwork to rule out autoimmune conditions that can lead to hearing loss, but she said that she expects that everything will come back normal.

Basically, she couldn’t explain the sudden drop, but after hearing about my father’s auditory processing and its extreme similarity to mine, she said that it’s probably all genetic. She gave me the option of going to an ENT clinic in Boston, but when I asked whether she thought it was actually worth it to shlep to Boston for more testing, she said, “I’m not sure. Let me think about that.”

I finally said to her, “You know, whatever is causing the drop-off, no one has ever breathed a word to me about it getting better. I think it’s good that we rule out really serious stuff that could be causing it, but if it’s something otherwise benign, that can’t be changed, what’s the point? I’ve accepted that my hearing is the way it is. I just need some support for dealing with it.”

She seemed to understand what I was talking about, and we agreed to have another appointment in a month to discuss things further. I got the bloodwork done (after having to flee the building for several minutes because they decided to test the alarm system while I was waiting), and then I came home even more convinced that my next order of business is not medical, but support-oriented.

I’ve got to get some support from a therapist for living with a disability and all the nonsense that the world throws at me about it—including all the ableist stuff I’ve still got to weed out of my own head. And I need some support for becoming more assertive and confident about the adaptive measures I need to take and the ways in which I need to advocate for them. I can’t continue to go this alone. I mean, actually, I can if I have to, and it’s good to know that I’m capable of doing so, but I really shouldn’t have to.

It’s all a work in progress. More later, as the work progresses.

© 2011 by Rachel Cohen-Rottenberg

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On Difficulty and Disability

February 23, 2011 Rachel Aging, Disabilities, Hearing, Self-Advocacy

Difficulty is not a welcome concept in our culture.

Everything is supposed to be easy. We have commercials that promise us a life of comfort. All we have to do is buy the right recliner, drive the right car, follow the right weight-loss program, or purchase the right labor-saving devices. The most valued people in our culture are young and able-bodied because, let’s face it, life only gets more difficult with age or disability.

The difficulties are physical as well as social. As much as I value who I am, I am not one to say that my disabilities are physically easy; add in the constant necessity of self-advocacy and the frequent experience of exclusion, and I’ve got a life that doesn’t come close to the ideal of ease and comfort that every advertisement tries to sell me.

It’s becoming clear to me that a great deal of our culture is based is the lie that life is supposed to be easy. And I’m coming to feel that this lie, in itself, is responsible for a great deal of the struggles that we face as disabled people.

While I’ve had the unbelievable privileges that come with being white, American, middle class, and educated, I’ve also had my share of hard times. For most of my life, I’ve gotten through the hard times by thinking, “Well, next year (or when I graduate/get married/have a baby/buy a house), life will be easier.” Sometimes, it has gotten easier (before it’s gotten harder again), but lately, life just feels plain difficult. My hearing condition take a lot of energy, a lot of discipline, and a lot of work. It is what it is. There is no changing it. At some point, I might grow so accustomed to my disability that it feels easier to carry, but I’ve stopped setting my sights on that mythic day. It might come, and it might not. Who knows? At this point, I have to stay with what is. I am much more in the present moment than I have ever been, simply doing the work that needs to be done.

But sometimes, I still catch myself thinking, “What the hell happened? Life is supposed to be easier.” And trust me when I say that thoughts of how life is supposed to be make the life one is actually living so much more difficult. The dissonance between the ideal and the real is both draining and painful.

And so, of late, I’m coming to accept that life is difficult. I think it’s difficult for most people on the planet. In the rich countries, we get desensitized to this fact—partly because we’re promised a “happily ever after,” and partly because a lot of people in the rich countries actually have it pretty good a great deal of the time. So, because many folks don’t see the kinds of lives that most people live, they become unfamiliar with the idea that life is full of harsh and painful things. And when they come up against those harsh and painful things in their own lives, they panic, because nothing has prepared them for the inevitable storm.

I’ve come to feel that one of the primary reasons that disabled people are so ostracized and excluded in our society is that we remind everyone that life is a messy, fragile, difficult thing. Our very existence flies in the face of the myth that, with the right combination of hard work, positive thinking, willpower, and possessions, life becomes what it’s “supposed” to be: safe, easy, and fair. Our interruption of the cultural myth is one of the reasons that all disabled people, at one time or another, have the experience of feeling invisible, even when in plain sight. It also explains why our attempts at inclusion are met with everything from good intentions that miss the mark to the mind-boggling experience of outright hostility.

If you weren’t born with a disability, but you live long enough, aging is sure to take you out of the camp of the typically able-bodied. Dealing with that change, at an advanced age, can be very hard. For the past few years, my husband has been going down to New York City, on a regular basis, to visit and care for his dad. At 94, his dad is fortunate to be able to live in his own apartment but, as the years have gone by, he has lost more and more of his ability to do the things he’s always done. These days, he is physically very frail and requires a great deal of assistance. Every time Bob visits, he hears his father’s constant refrain: “I’ve lived a charmed life. It wasn’t supposed to end up this way.”

And I hear him. I really do. Despite all the work I’ve done, I’ve heard those words coming from deep inside me, too. In these past several years, I’ve said to myself many times: “This is not how things are supposed to be.” So many of us are unprepared for the harsh realities.

In many ways, I’m lucky to be struggling with these realities at 52. It would be much harder to face them, for the first time in my life, in my 90s. I’m fortunate to be learning that, while it’s a long road from pursuing ease to grappling with difficulty, it’s also a long road from life being difficult to things being impossible. There is a pervasive tendency in our culture to elide the two, as though any difficulty is simply out of the question. From this confusion of the difficult with the impossible comes the trope of the “inspiring cripple” (and its counterpart, the “inspiring caretaker”). It’s as though typical people look at us and think, “Oh, you are so inspiring! If that were me, I would find it impossible!”

Sometimes, when I run across this kind of thinking, I just want to shout, “No, no, no! As long as we’re alive, difficult is not the same as impossible!” The two may look like the same thing to an outside observer, the two may even feel like the same thing in most people’s experience, but they are not the same thing. At all.

We learn to adapt. I’ve adapted quite well and found a number of creative ways to work around my difficulties. I can’t say that I’ve adapted to being treated in all the ways that disabled people are treated in this culture, but give me time. I’m working on it.

© 2011 by Rachel Cohen-Rottenberg

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Adventures in Self-Advocacy: Saying Thank You

January 24, 2011 Rachel Hearing, Marriage, Self-Advocacy

In the course of our trip to Maine last week, I learned the importance of expressing my appreciation to the people who provided accommodations and accessibility.

As soon as the employees at the inn began giving us quiet places to eat, I found myself looking for opportunities to let them know what an enjoyable time I was having. For instance, when we were seated in the dining room away from the other guests, I said, “Thank you! This is just what I need.” When we were seated in a quiet area for breakfast, and the waiter asked whether the situation was working for me, I said, “Absolutely. This is just perfect.” When the restaurant manager asked us whether we were enjoying our stay, I said, “People here have been very helpful in working around my sensitivities to sound. It’s made all the difference in the world. I very much appreciate it.”

Now, this course of action may sound like ordinary politeness—and perhaps it is—but I always feel myself walking a very fine line. On the one hand, I know that I have a right to inclusion. And so, I could just have sat there with a smug attitude that said, “I deserve this treatment. Why should I thank you?” And yet, it’s just not in me to act that way. Yes, we all deserve inclusion, just as we all deserve love, friendliness, and beauty in our lives, but it does no harm to say “thank you” to the people who provide them. It’s good for the soul of the receiver and for the soul of the giver.

On the other hand, saying “thank you” for accommodations can easily turn into a self-effacing apology for our needs, as though we’re getting a favor that we don’t deserve. It is all too easy to venture into the realm of “Thank you for giving me this special treatment,” or “I appreciate that you don’t mind my being such a bother,” or “It’s so nice of you not to get irritated by my request.”

No. When asking for accommodations, there is no special treatment involved. What we’re asking for is to be treated as equals. And if a person is bothered or irritated by our respectful, persistent requests to be treated as equals, I would count that as a very good thing. After all, in order for anything to change, people have to move outside their comfort zones and carve out new ones. Otherwise, they’ll never expand their ideas of what’s possible, what’s deserved, or what’s ethical.

Perhaps the best way to express appreciation for accommodations is to say, “I want to acknowledge the way you accorded me respect and provided equal treatment. You did an excellent job.” To my mind, this type of statement increases one’s dignity, and it lets the other person know that he or she hasn’t just followed the law or provided good service. The person has engaged in an ethical, potentially life-changing moment for another human being. And by showing our appreciation, we make it more likely that the person will provide accommodations to the next disabled individual who comes through the door.

The other night, my husband told me that he is planning to write a letter to the hotel manager. He wants to let her know how much he appreciates what her staff did for us. When I asked whether we should write the letter together, or whether I should be the one to write it, my husband kept pushing back with “That’s okay. I’ll write it.”

At first, I felt left out; after all, shouldn’t I be the person to follow up? But now I realize that when people make accommdations for me, they also make accommodations for my husband as an individual, and for both of us together. When my own possibilities expand, we can do more things together, and my husband’s enjoyment increases.

I think that it’s important that our loved ones express their appreciation on their own behalf, because we do not exist in isolation. How people treat us deeply affects the people who care about us. So, as much as I want to follow up with a letter myself, I’m going to let my husband have his say.

God willing, I’ll have many other opportunities to say “thank you” myself.

© 2011 by Rachel Cohen-Rottenberg

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Adventures in Self-Advocacy: Lessons Learned on Vacation

January 20, 2011 Rachel Hearing, Marriage, Self-Advocacy

My husband and I just got back from a few days in Maine, where we went to celebrate our eighth wedding anniversary. We stayed at an inn on the coast that we’d enjoyed when we were first married. The place is wonderful: great food, beautiful rooms, friendly staff, and a large common area with a fireplace. We had agreed that we should prepare to make adjustments in order to keep my auditory system happy, including eating in our room if the staff couldn’t find us a quiet place to sit in the restaurant. We figured that the whole point was to be together, and that we’d have a good time, no matter what. We hadn’t gone on vacation in years, so we were determined to have a good experience.

And we did have a fun time, but it took some doing. Ultimately, we had an even better time than I’d hoped for, and I learned a lot along the way.

When we checked in on Monday, my husband explained that I have hearing difficulties, and that we would need a quiet place to have our meals. The nice young man at the check-in desk said they would do their best—not exactly a commitment, but promising.

When we showed up for dinner, my husband explained that they needed to turn the music down if we were going to be able to be there. What he meant was “off,” but what he said was “down,” and I didn’t bother to clarify. Of course, I should have said, “In order to be here, I need you to turn the music off completely. Would you do that?” But I didn’t feel confident enough to risk an initial refusal and continue the conversation. Instead, I lapsed into the denial of “Well, it never actually works for me to converse in a place with music playing, but maybe this time, it will.” Yeah, right. That was my first mistake.

The person who seated us did not get it. She tried to get us to sit at the far end of the restaurant, away from the speakers, which didn’t help, since the room was quite small. I don’t know what she was hearing, but my ears weren’t picking up any difference in sound whatsoever. So, I said, “You’re really going to need to turn the music down in order for us to stay.” She said she would.

We waited: one minute, two minutes, three minutes. Still nothing. I was starting to max out. When she came by again, she said, “So, how is that?”

I was shocked, but still in good enough shape to say, “Did you actually turn the music down? I hadn’t noticed.” I even made eye contact—which, as you know, is a big deal for me. It’s kind of critical to do that when you’re needing to get politely in someone’s face, so I managed. When she registered what I’d said, she looked at me as though she expected me to back down. I didn’t. I just kept looking at her.

And then my husband chimed in with, “Could you please turn the music down?”

Unfortunately, that’s when the woman said, “No, that’s all I can do,” in a tone of voice that would have been more appropriately applied to the statement, “I’m so glad you’re enjoying your meal. Let me know what else I can do for you.” I’m a classically trained musician, and I can read vocal tones like no one’s business. This woman’s tone was so inappropriate to her words that it was unnerving.

My heart was steadily dropping toward my shoes, and believe me when I say that I really need to work on that response. It doesn’t help at all. And here’s where I made my second mistake: I really wanted to up the ante about the music, but all I could feel was “What’s the use?” and I let that feeling win. And for my husband’s sake, I decided to stay. So, I put my earplugs in, and doing so made the music recede quite nicely. Of course, I had trouble hearing my husband, and had to ask him to get close to my face and repeat himself a bunch of times, so it was very tiring, but I sat there because, for some strange reason, I thought I should.

Once the food was served, we were able to begin our meal. There were only two other couples in the restaurant, and they were very soft-spoken, so I rationalized that things could always be worse. Of course, in the process, I completely ignored that I was doing way too much work for what should have been a relaxing dinner.

And then, as if on cue, things got worse. The chef came out and started yacking, in a loud voice, with the man at the table next to us. I could hear him quite clearly through my earplugs—that’s how loud he was. And he went on, and on, and on. After awhile, I just started staring at him, and it wasn’t a polite stare. He made eye contact with me a couple of times, but he just kept going. I very badly wanted to say, “Could you please lower your voice? We’re trying to enjoy our meal here.” But giving into the waitress’ refusal to turn down the music had already diminished my sense of power, and I didn’t feel comfortable or centered enough to confront him. Plus, my auditory system had long since started screaming, “Why the hell are you still in this room?” I was not exactly at my best.

Failing to confront the loud chef was my third mistake. It only made me feel more disempowered.

I found myself eating my meal really fast, just to get out of there, and I left in short order. And worse, I was absolutely exhausted and miserable for the rest of the night. I was upset, I couldn’t think straight, my stomach hurt, I felt nauseous, and every muscle in my body was tense. I was wiped out.

When Bob got back to the room, we agreed to figure something else out for the next day. And we did. He went to the restaurant manager and explained the situation, and wow, did he get results! They agreed to seat us in our own little area of the restaurant, with a door that would shut out the sound from the rest of the place. When we got there the next night and found that no such arrangement had been made, my heart sank again, but when we inquired, the waitress said, “Oh, yes, we’ve had a change of plans. We’ve decided to serve everyone in the grille, and you can have the entire dining room all to yourself, without any music playing at all.”

Can you imagine? The silence was so sweet. I was in heaven. We had a wonderful meal and ended up feeling very refreshed. And the next morning, they gave us our own little dining area for breakfast, away from music and conversation.

So, when all was said and done, we had a great time. We ate delicious food. We walked on the beach in a snowstorm. We sat by the fire and read. We watched movies. And we relaxed. When Wednesday arrived, it was difficult to leave, but I felt better in my mind by the end of our time there than I’ve felt in awhile.

On the way home, we debriefed, and I realized how much I’d learned about self-advocacy from the whole experience. Here’s what I realized:

a) I have to plan ahead of time. For instance, I cannot wait until I show up at a restaurant before I explain my situation and negotiate what I need. So, before we go on our next vacation, I’m going to write a letter to the manager wherever we stay, explaining the accommodations I need, and getting agreement on what they will provide. That way, even if I show up and they don’t give me the accommodations right away, I’ve got a basis on which to argue without having to start from scratch. I can take out my letter and say, “Look, I explained the situation well in advance of coming, and you agreed to make accommodations before I ever showed up. So, how do you intend to fulfill your part of the agreement?” And I can just keep asking that question until I get what I need.

b) I cannot try to be in an environment that does not work for me. Ever. I cannot sit in a restaurant with music playing and expect to converse. I cannot filter out the sound when people nearby are talking. I cannot filter out the sound when people in another part of the room are talking and their voices are carrying. It does not work. Those days are over. I’ve been learning this lesson, over and over, in all kinds of ways. I end up in pain, pure and simple. If I’m by myself and the room isn’t too loud, blocking my hearing works more or less well. If I’m with someone else, though, blocking my ears is beside the point.

So why did I slip into denial at the restaurant in Maine? Why didn’t I ask for the music to be turned off? Why didn’t I say at the outset, “You know, I need a place away from music and conversation in order to enjoy my meal. Can you help me make that happen?” Why did I make these compromises that are so bad for my health? I wasn’t just avoiding confrontation. In the past, setting these limits has made me feel isolated and so, in order to avoid that feeling on our vacation, I put up with things that made me sick. But when the accommodations finally came through, I saw once again what was possible. I saw that I have a right to go places and enjoy myself like everyone else, without rendering myself ill, and that I can advocate for that right. My disability is not purely physical. It’s largely socially constructed, and there are ways around it.

Self-advocating doesn’t mean that every place will become accessible to me, but I increase the odds considerably by insisting on being included, and by trying to work with people to make that happen. After all, I don’t need to go out all the time. I’m on friendly terms with my solitude. But I would like to be able to go out once in a while and have it work. There are a couple of restaurants in town that seat us in quiet areas, away from ambient sound, where we can enjoy our meals. I know that it’s possible, and I need to remember that.

c) I very badly need to undo the cascade effect that begins with failing to ask for what I need, or with giving in to refusal and dismissal. Once I let go of my power and back down in one instance, it gets that much harder to find my power again when I need to stand up in another instance. It wouldn’t be so terrible if these instances were spaced days, weeks, or months apart, but when you’re dealing with sound, they can be spaced moments apart. If I give in and say, “Okay, I’ll compromise in this one instance, even though it won’t be good for me,” it’s nearly impossible for me to meet the next instance and say, “Okay, that’s enough.” Instead, I just keep backtracking, and that only makes the situation worse.

d) Being disabled makes self-advocacy a lifelong, daily necessity. I hadn’t really wanted to face this fact before, but it really hit me full force this week. I hate being confrontational face-to-face; so many of my adjustments to all of my disabilities have been along the lines of, “Don’t mind me. I’ll manage.” That just isn’t going to work anymore, because in truth, with my auditory system in the shape it’s in, taking a “don’t mind me” approach is bad for my health. It would be like acceding to pull myself by the arms down the street rather than use a wheelchair and insist on curb cuts. My auditory processing condition may be an invisible disability, but that doesn’t make it any less serious or put me in less pain.

e) Self-advocacy includes allowing others to speak up on my behalf when they are available to do so. I’ve resisted this idea, because I always feel that I should be able to do everything myself at all times, but that’s really based on an illusion.

The fact is that no one does everything alone all the time. Everyone gets help. The help is often invisible, because the world is set up for typically able-bodied people, but a great deal of the time, non-disabled people get plenty of help. As long as I don’t give my power away to the person speaking on my behalf, or allow asking for assistance to make me feel less than competent, or come to depend on someone else’s voice more than on my own, I’m okay. After all, Moses let Aaron speak for him sometimes, right?

And if no one is there to speak on my behalf, I am fully capable of finding the inner strength to do it myself. I’ve been doing it more and more as I realize my right to be fully a part of this world. Practice makes perfect, and I am seriously practicing.

f) It’s very difficult to do self-advocacy, emotionally as well as physically, so I need to reduce my worry and tension over it. I have to breathe, relax, and choose my words carefully and to best effect.

I never imagined that I’d have to do any of these things. My life is not how I’d once thought it would be, but whose life is? My life is what it is. All I can do is meet it head on, knowing that I have a right to respect and inclusion, just like everyone else.

© 2011 by Rachel Cohen-Rottenberg

33 comments

My Most Recent Audiology Assessment

December 16, 2010 Rachel Communication, Disabilities, Hearing, Self-Advocacy, Sensory Processing Issues

Several months back, I wrote about the results of my July audiology assessment. A few months after the assessment, I began to feel that something had gone terribly wrong and that my auditory processing had gotten significantly worse.

My first inkling came in the form of a visual. One night, as I thought about the way I’d been processing auditory information, the image that came to mind was a feeling of the walls closing in. It was as though I were in a room that was getting smaller and smaller, so that every way I turned, I hit a wall. It was terrifying. I decided to call my audiologist’s office and schedule another appointment right away. When I told the receptionist what was wrong, she agreed that I needed to come in as soon as possible.

When I went in for the appointment on November 11, the audiologist asked me how the process of tapering off Lorazepam was coming, and I told her that I was almost done. (I am now completely off the Lorazepam—for good!) In all other respects, my health has actually been improving. I’m sleeping better. My other sensory sensitivities have lessened. My thoughts are clearer. My emotions are more manageable. All of these things have gotten better while my auditory processing has felt like it’s been spiralling downward. The audiologist suggested that perhaps my auditory processing abilities were stable and only seemed worse when contrasted against everything else.

I was hoping she was right. Unfortunately, once we did the tests, we found out that she wasn’t. My auditory processing abilities have drastically gone downhill. Here are the results of each test:

Pure Tone Audiometry
This test consisted of a series of tones. When I could hear a tone, I pushed a button. The test showed no change since July. The mild hearing loss in my right ear and moderate hearing loss in my left ear have remained stable.

Auditory Patterning
The auditory patterning test measures how well the subject can hear and replicate relative pitch. The audiologist played a series of three sounds and asked me to tell her whether the pattern was “low-low-high,” “high-high-low,” and so on.

July assessment: I scored 100% in my left ear and 100% in my right ear.
November assessment: I scored 100% in my left ear and 100% in my right ear.

These results didn’t surprise me. As I’ve said before, ordering things into patterns will be the last of my faculties to go.

Auditory Closure
The auditory closure test measures how well the subject can hear words spoken very quickly. Auditory closure is an area of processing that concerns the listener’s ability to fill in missing or disorted patterns of the auditory signal and recognize the whole message. It is an area of processing that can have a direct impact on a person’s ability to understand degraded speech.

July assessment: I scored 48% in my left ear and 52% in my right ear.
November assessment: I scored 48% in my left ear and 52% in my right ear.

During both assessments, this test was very difficult because I couldn’t hear the words clearly enough to form a word-picture in my mind. I’m unable to hear soft consonant sounds like “p” or “th”; they’re at a frequency that my ears don’t pick up. Any sound at this frequency drops out at the end of a word. When words come at me slowly, I can usually run through the list of possible meanings in my mind’s eye, but when the words come at me quickly, the sense of the sound fading away is especially acute, and my ability to see the words in my mind breaks down.

When I couldn’t see the word in my mind, I became very frustrated with the process, which probably accounts for why I become overwhelmed when people around me are talking too quickly.

Both sets of scores are in the Poor range, but at least there had been no change since July. The audiologist concluded that I am “presenting below normal limits in this area of processing.”

Binaural Integration
The binaural integration test measures how well the subject can hear out of both ears simultaneously. Binaural integration is an area of processing that can have a significant impact on a person’s ability to understand multiple auditory signals at the same time. People with difficulties in this area often have a difficult time understanding when more than one person is speaking at the same time.

The audiologist played a series of four numbers: two in one ear, and two in the other. I had to repeat the numbers to her.

July assessment: I scored 90% in my left ear and 92.5% in my right ear.
November assessment: I scored 28% in my left ear and 65% in my right ear.

This test was immensely frustrating. In my July assessment, I had dealt with my processing limitations by memorizing what I’d heard, visually lining up the image of the numbers in my mind’s eye, and then speaking them. In my November assessment, I could not line up the numbers in my mind’s eye at all. By the time I had gotten to the last couple of numbers, I’d have forgotten the first ones. A few times, I remembered three of the four, but mostly, I could only identify one or two. At one point, I noticed myself listening only out of my right ear in order to simplify the process, so of course, I only heard half of what came into both ears.

The November scores are in the Poor range. The audiologist concluded that I am “currently presenting with significant difficulty in this area of processing.”

Binaural Interaction
The binaural interaction test measures word recognition in noise. Binaural interaction is an area of processing that can have a significant impact on a person’s ability to understand speech in the presence of background noise. The noise can include anything from the scraping of chairs to the hum of fans and overhead projectors or speech. People with difficulties in this area often require a greater signal-to-noise ratio in order to pick up and understand more of what is being said.

For this test, the audiologist played a series of words spoken in the midst of noise. For each word, I had to repeat what I had heard.

July assessment: In my left ear, I scored 80%, and in my right ear, I scored 68%.
November assessment: In my left ear, I scored 32%, and in my right ear, I scored 20%.

In my July assessment, I had been able to fish many of the words out of the noise, hold them in my visual memory as word-pictures, and then speak them. In my November assessment, I couldn’t make out enough sounds in most of the words to form a word-picture in my mind at all. A number of words simply disappeared into the background noise. For others, I could make out a vowel sound and a consonant, but I could not even venture a guess as to the other letters.

At one point, when I was nearly in tears, the audiologist stopped the test and simply played a series of words in quiet, first in one ear, and then in the other. It was as though I were looking at black letters standing out against a white background. I scored 100% in quiet. Then, she kept going with the words in noise and the letters began fading out again.

Needless to say, the November scores are in the Poor range. The audiologist again concluded that “I am currently presenting with significant difficulty in this area of processing.”

The audiologist was perplexed about my scores dropping so sharply, so she gave me a referral to a neurologist. My sense of what’s happening is that my compensatory mechanisms have broken down, probably from decades of overuse, so that I’m now left to deal with an auditory processing system in shambles. In February, I have an appointment with a neurologist at Dartmouth-Hitchcock to do further testing, so I’ll let you all know if anything interesting comes to light.

© 2010 by Rachel Cohen-Rottenberg

20 comments

So I DO Have a Sense of Direction After All!

September 23, 2010 Rachel Hearing, Sense of Direction, Visual/Spatial Skills

All my life, I’ve considered myself to have a poor sense of direction. Actually, poor doesn’t really describe it. It’s more a feeling of having been born without any sense of direction at all. I’ve always said that if I think I should go left, I should go right—except for those few times that I should go left. I’ve gotten lost in all the great cities of Europe. (Okay, most of them. The other ones I haven’t been to.) I’ve gotten lost on rural Massachusetts backroads. I’ve gotten lost on highways. I’ve gotten lost in suburbs. You get the idea.

But that was then, and this is now. Maybe it’s menopause, or maybe I’m just more self-aware, or maybe it’s that I’ve redefined “lost” to mean “having an adventure,” but I seem to be developing a sense of direction here in mid-life, and I’m astonished.

I first noticed this new phenomenon when I was taking a walk through the woods a few weeks ago. It had taken me a long time to venture into the woods, even though the trails are well marked. Some months ago, I began by walking straight into the woods for a quarter mile or so, and then walking straight out. Over time, I learned to take the same winding trail over and over, even when parts of it weren’t marked at all. Then, a couple of weeks ago, I decided that I just wanted to ramble into unknown territory. A number of trails criss-cross one another, and I figured, “Well, even if I get lost, it’s not as though I’m going to end up in New Hampshire. I won’t won’t even make it out of Brattleboro.” So I rambled. At one point, I took a byway I’d never taken, and then I did something I’d never done before: I stopped and oriented myself. I could tell just where I was: which side of town I was facing, which familiar path was parallel to mine, and which way I had to go to make a circle and get back. And sure enough, when I was done, I came out just where I’d thought I would! I was amazed.

As I meditated on this new achievement, I realized that a large part of my success was due to the fact that I was alone. When I’m walking with Bob or with a friend, I’m usually talking and listening, which necessitates all of my attention. I have to focus so much to decode what the other person is saying, and to articulate what I want to say, that I cannot pay attention to where I am. For this reason, I usually get in the habit of going on a path I know well; if I’m familiar with the path, I don’t have to pay much attention to it and can converse all I like. If I’m unfamiliar with the path and can’t pay attention to it because I’m conversing, I have to depend on the other person. I don’t much like depending on other people to tell me where I am, so I don’t tend to explore new routes with others. And until that day in the woods, I’d never explored them myself. So it was really fun and very empowering to realize that I could do it.

Last week, my new-found confidence was put to the test: I drove to my daughter’s soccer game in Putney, a 15-minute drive up the highway from Brattleboro. I hadn’t been on the highway in a year or so, and I had never been to the school where the soccer match was taking place. However, directions in hand, I made my way. At one point, I went the wrong way, but that was because the directions were unclear; the instructions said to follow a left-hand fork when, in fact, I should have taken a left-hand turn. As soon as I realized my mistake, I headed back to a gas station, asked directions, and found my way just fine. As it turned out, my daughter’s bus had gone the wrong way, too, and for exactly the same reason!

Then, today, I had a bit of an adventure. I drove to Miracles in Motion in Keene, NH—about a half hour each way. I found my way to my lesson without any trouble, but on the way back, I took a wrong turn. It was at one of those highway forks with five different road signs, and I hadn’t stopped to think whether I wanted NH-10/NH-12 North or South. Unfortunately, I took the path of least resistance and ended up going North. I realized my mistake immediately, took a deep breath, and said, “Okay. Just take the next exit and find your way back.” It wasn’t quite that simple, but I made it to the middle of Keene and decided to look for signs for NH-10/NH-12 South. After a couple of miles, I could see that I wasn’t getting anywhere, so I turned and headed in another direction. The whole time, I was thinking about how nice it would have been to have a map of the area, and maybe my iPod to access MapQuest, but I didn’t have either one, so I decided to look for a gas station. As I was looking, it occurred to me that if I continued heading out of town, I’d find a state highway. And so I did. I headed out of town and found NH-12 South! I kept following the signs until I was back on the right road.

So, was I lost? I’d prefer to think not. I took a wrong turn and went out of my way for awhile, but with a little bit of thinking, I found my way back, without any tears, fears, or self-deprecating thoughts. In fact, at one point, I thought, “Well, it’s taking a little longer to get home than I would like, but here’s a good opportunity to practice my driving!” By the time I got home, it was as though I’d never taken a year-long break from the road. That’s how confident I felt.

Perhaps everything went so well today because I was alone. In the past, when I was driving my daughter hither and yon, so much was going on. We’d be talking, or music would be playing, or I’d simply be focused on what was going on with her, and sometimes, if we were in unfamiliar territory, I’d get lost. As a result, my daughter has seen some beautiful countryside from the car.

You do see some great things when you get lost, but I like this new sense of spatial orientation quite a bit. I think I’ll continue developing it.

© 2010 by Rachel Cohen-Rottenberg

10 comments

Visual Hearing and Self-Advocacy

August 19, 2010 Rachel Communication, Disabilities, Hearing, Modes of Thought, Photography, Self-Advocacy, Sensory Processing Issues, Visual/Spatial Skills, Word Pictures

Back in July, I underwent a two-hour audiology assessment. I got the full report in the mail last week, so I thought I’d share the results and how they lend themselves to self-advocacy. From a medical point of view, I have the following:

A mild hearing loss in my right ear
A moderate hearing loss in my left ear
Tinnitus
Auditory processing disorder

I hadn’t been aware of the hearing loss, so I wonder whether it’s really a “loss,” or whether I’ve always heard that way. I also wasn’t aware that the intermittent, high-pitched sound in my head was tinnitus; I’ve experienced that sound, on and off, all my life. Of course, the interesting auditory processing system I carry around was not news to me, although it was fun to have it show up in an audiology report instead of constantly having to convince people to take my word for it.

But that’s the medical point of view. From my internal point of view, the assessment showed me, in new and interesting ways, just how much I rely upon my visual sense to translate sound, and just how much I need to advocate for myself as a visual hearer.

The audiologist gave me several hearing tests, all of which took place in a sound-proof booth. (Heaven!) After I told her that my experience of sound is acute, she adjusted the volume for each test so that the sound would not be aversive. For the first test, in order to get a baseline for what I could actually hear, she simply gave me a series of words to repeat. Then, things got really interesting.

Binaural Interaction
The binaural interaction test measures word recognition in noise. The audiologist played a series of words spoken in the midst of noise—noise that I can only describe as a combination of static and the sound of an airplane flying somewhere in the vicinity of your house. Not fun. In my left ear, I could recognize 80% of the words, which rates somewhere in the middle of Good; in my right ear, I could recognize only 68%, which lies at the border of Poor. (Poor is below 68%.) What’s interesting to me is that I could distinguish sound better out of my left ear, in which I have less hearing, than in my right ear. It’s possible that hearing less allows me to filter out sound a little better. I’m not sure. At any rate, during the assessment, the only way for me to distinguish the words from the noise was to see them as spelled words and hold them in my memory. Each time, my repetition of the word was delayed because I had to work quickly past being overwhelmed, somehow fish the word out of the noise, hold it in my mind, look at it, and read it out loud.

Binaural Integration
The binaural integration test measures how well the subject can hear out of both ears simultaneously. The audiologist played a series of four numbers: two in one ear, and two in the other. I had to repeat the numbers to her. I got very anxious at the prospect of having to decode competing sounds, but I did surprisingly well on this test: 90% in my left ear and 92.5% in my right ear. However, the high scores are deceiving, because the process was not in the least intuitive. I kept my eyes closed, I listened very hard, I memorized what I heard, I visually lined up the images of the numbers in my mind’s eye, and then I spoke them. I did lots and lots of work, which resulted in lots and lots of delay. It’s a good thing I’ve developed lots and lots of patience.

Auditory Closure
The auditory closure test measures how well the subject can hear words spoken very quickly. Yikes. For most of the test, I was guessing. Sometimes, I simply couldn’t hear a thing; I’d just throw up my hands and shake my head. When all was (very quickly!) said and done, I scored 48% in my left ear and 52% in my right ear. On the overview from the audiologist, those numbers don’t even show up in the range of possible results. In the understatement of the year, the report notes that I am “presenting below normal limits in this area of processing.”

This test was very difficult because I couldn’t hear the words clearly enough to form a picture in my mind. I’m unable to hear soft consonant sounds like “p” or “th”; they’re at a frequency that my ears don’t pick up. (Later in the assessment, the audiologist ran a test that showed that the cilia in my left ear, which should be picking up these frequencies, are inactive. I believe she referred to them as “dead.”) Any sound at this frequency drops out at the end of a word. When words come at me slowly, I can usually run through the list of possible meanings in my mind’s eye, but when the words come at me quickly, the sense of the sound fading away is especially acute, and my ability to see the words in my mind breaks down. For instance, for the word stop, I was hearing sto-. For all I knew, the word could have been stop, stock, or stall. When I couldn’t see the word in my mind, I became very frustrated with the process, which probably accounts for why I become overwhelmed when people around me are talking too quickly.

Auditory Patterning
The auditory patterning test measures how well the subject can hear and replicate relative pitch. The audiologist played a series of three sounds, and asked me to tell her whether the pattern was “low-low-high,” “high-high-low,” and so on. I took this test twice. The first time, I used my hand to replicate each sound. If the pattern was “low-low-high,” I moved my hand twice on the same plane before moving it up once. By doing this, I was able to see the sound visually and give the answer. When the test was over, I told the audiologist about the method I’d used, and she said, “Okay. We’re going to do the test again. This time, sit on your hands!”

I tried not to panic. She played the sounds again. This time, I saw the sounds in my mind as colored dots: pink for low and red for high. Apparently, this is a form of synaesthesia, something I don’t remember having experienced before. Since I’ve long had synaesthesia-envy, this was very cool.

Using my visual strategies, I scored 100%, in each ear, on both tests. After all, ordering things into patterns will be the last of my faculties to go.

Recommendations for Self-Advocacy
The audiology report lists recommendations for how to walk through the world and self advocate with my way of hearing:

1. During communication, decrease background noise (such as scraping chairs, running water, fans, and talking).

2. If instructions or directions are given verbally, check in with the person providing them to make sure that I’ve understood what has been said, particularly if no written instructions are available.

3. Request written information to supplement any auditory information. For example, when making an appointment with a doctor, request a card with the date and time.

4. As often as possible, ask that others present information sequentially, especially if more than one person is providing the information. For example, instead of “Before you watch TV, can you walk the dog and take out the trash?” ask others to say, “Can you walk the dog, take out the trash, and then sit down to watch TV?”

5. Ask if I do not understand or if I have missed something. It is important to be as open as possible about communication so that when breakdowns occur, they do not result in anxiety, frustration, and anger.

6. Repeat what I have heard to clarify that I have understood. If I have heard part of the message but not the whole, I need to repeat the information I did hear while asking for clarification of the information I missed. For example, if someone says, “The elephant is sitting on the sofa in the livingroom,” and I heard the part about the elephant, I need to say, “The elephant is sitting where?” If I heard only the part about the sofa in the livingroom, I can say, “What did you say about the sofa in the livingroom?”

I find it a challenge to put these kinds of recommendations into play, but I am making progress. It’s really just a question of inertia. I’ve spent so many years covering up my difficulties and guessing at what people are saying that it’s an adjustment to switch to words like, “I don’t know. Could you clarify?” But it’s been an immense relief to find out that my difficulties are due to differences in the way I hear sound, rather than absent-mindedness, or lack of intelligence, or just plain not caring (all false explanations with which I’ve bludgeoned myself over the years). It’s not a question of attention, intelligence, or love. It’s that I hear sound visually. It’s a simple difference. It’s much easier to ask for help with a difference than with a moral failing. At least, it is for me.

It’s now clear why I’ve been a writer since I first learned to hold a pencil. I’ve spent most of my life struggling to decode sound and render it into words. It’s only in the past year and a half, since I’ve allowed myself to block my hearing, that I’ve realized that my pure visual sense is extremely acute. Because I now don’t need to decode sound constantly and to the exclusion of all else, I can notice what my other senses are doing. There are days in which I can’t even think about putting something into writing. I’m too involved with the pure fascination of the visual world and with rendering it in drawings, paintings, photographs, and other kinds of art.

But I’ll never lose my attachment to the written word. In the world of sound, it’s my anchor.

© 2010 by Rachel Cohen-Rottenberg

13 comments

My Father and Selective Deafness

June 29, 2010 Rachel Childhood, Communication, Hearing, Sensory Processing Issues

I’ve had an epiphany lately regarding my father and some of his formerly most mysterious and annoying habits.

As I’ve written before, it’s apparent to me that my dad was on the spectrum. Of course, no one ever talked about such things back then, so when I was growing up, the family explained my father’s oddities by saying that he was hard of hearing. Of course, he never went to an audiologist or had hearing aids or any of that nonsense. My mother used to say that he’d been born with nerve damage in his ears, and that no one could do anything about it. I’m virtually certain that she made up that story to explain the inexplicable, since she made up a lot of stories, and she believed them, too.

My father’s hearing issues were very aggravating to me as a kid, because every single time I said something, the very first thing out of his mouth was, “What?” Every single time. It was a reflex. It didn’t matter how loudly or how softly I spoke, or what else was happening in the room. He’d always say, “What?” When I had the patience, I’d repeat myself, in exactly the same tone of voice, and then he’d hear me. When I’d get exasperated with him and say, “Why aren’t you paying attention to me the first time?” his response would always be the same: “You’re mumbling.”

And that response would send me into the stratosphere, because I Did Not Mumble. No one else in the entire world ever said I mumbled. I knew that I was enunciating the English language perfectly well, and I still get an adrenaline rush just thinking about my father telling me otherwise. He knew how much it bothered me because, after awhile, he took on a new annoying habit: when he couldn’t hear me, he’d say “You’re mumbling,” and he’d laugh. And then I’d say, “I am not mumbling. You are not hearing me.” But it never made a difference. It was always “What?” and “You’re mumbling.” By the time I left home, it had nearly driven me up the wall and back.

For several years afterward, I continued to buy the idea that my father was hard of hearing. Then, one day, when my parents were visiting in California, everything changed. We were all in the car; my father was driving, and I was in the back seat. There was lots of ambient noise: highway noise, the sound of the car wheels running over the pavement, and everything else you hear in a car going 65 miles per hour on a six-lane freeway. Nonetheless, I said something to my father. I can’t even remember what it was, because I figured he wouldn’t hear it anyway. But, miracle of miracles, he heard me. The first time. Without saying “What?” or “You’re mumbling.” He just heard me, like a regular person, and he just answered me, like a regular person.

I suppose I should have felt angry, as though he’d been playing some sort of weird game all those years, but I wasn’t. I intuitively knew that he really had heard me clearly at that moment, and that he hadn’t been able to hear me before. I became fascinated by the contradiction, but I really didn’t know how to explain it.

These days, though, it makes perfect sense to me. After all, when I go out into the world, I often block my hearing—with earplugs, a Peltor headset, or both. Today, I’ve been able to wear just my earplugs, and hear people as though they’re at a distance, and say a few words in order to get my errands done. But tomorrow, when I go to my Voc Rehab appointment, I will have to wear the headset in order to block out ambient noise and allow myself to concentrate. In other words, I render myself more or less able to hear as needed.

I’m now realizing that my father must have had the same amount of auditory sensitivity and processing difficulty that I have, and that he intuitively came up with a survival strategy. Somehow, he selectively rendered himself deaf. It’s as though he just shut down his attention and literally couldn’t hear, and his saying “What?” was his signal to bring his attention back up. This strategy also provided him with a way to cushion himself against having to hear everything loud and clear the first time, and thus avoid becoming overloaded by it. It really was quite a brilliant strategy, and I’m in awe that he was able to pull it off. As for me—I simply cannot let my auditory attention wane. It’s always on alert, unless I block my ears. Then, even if I can hear somewhat, the person talking feels further away and the sound of his or her voice doesn’t penetrate my nervous system with anything like the same intensity. Somehow, my father was able to give himself the same experience without having to explain why he was wearing a lawnmower headset to go shopping.

My father is now gone, and even if he were still alive, he would not for a moment accept anything that I’m saying. He wouldn’t accept that we were both on the spectrum, he wouldn’t accept that we both had extraordinary sensory sensitivity, and he wouldn’t accept that I couldn’t overcome all of it by sheer force of will. In fact, he’d laugh me right out of the room for even broaching the subject.

So I’m just left with a new understanding of my dad, and it makes me feel closer to him. It consoles me to understand him better now.

© 2010 by Rachel Cohen-Rottenberg

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