Archive for December 16, 2010

My Most Recent Audiology Assessment

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

A Haunting Photo

I want to share a photo of my father. In the photo, he is about eight or nine years old, and he’s kneeling behind his younger twin siblings. Except for a photo taken of him as an infant, it’s the only childhood photo I’ve ever seen of my father.

I’ve been haunted by this picture for many years. Once I started realizing that my father had Asperger’s, I finally realized why. My father is doing something with his eyes in this photograph that makes me hurt inside:








































He’s looking at the camera, and not looking at the camera, at the same time. He looks like he’s in pain and trying not to show it. His siblings are looking directly at the camera, while my father looks almost as though he’s between worlds.

He almost always looked that way, like someone trying desperately hard to plow ahead while the world pressed in on him with a bewildering amount of intensity. I don’t know that it’s possible to forgive the things he did when he was alive, but I understand him now. He’s no longer my frightening and tyrannical father. He was someone in constant pain. He felt completely alone and vulnerable, all the time, every day, for his entire life, and he had no words for it, and he had no one to talk with about it, and he had no community, and he had no support. He was the man of the house—that was the beginning and the end of everything—and he looked straight ahead into the world and tried not to flinch.

It didn’t work. His pain came out in soul-crushing ways.

I complain a lot about the ways that the medical profession pathologizes us, but we have a big advantage over my father. We have one another. And the children coming up will at least have the words to describe who they are and what they feel, even if those words miss the mark. It’s a beginning. It’s something to work with.

It’s more than my father had.

© 2010 by Rachel Cohen-Rottenberg

Self-Advocacy Begins at Home

Last week, we received a fundraising letter in the mail from a local agency that serves people with developmental disabilities and mental health issues. It’s a very good organization that we wholeheartedly support, but the letter contained a moment of “us and them” thinking that I could not let go unanswered. And so, as the ASAN-VT chapter leader, I wrote and sent the following letter to the executive director. (I’ve changed her name for the purposes of this post.)

December 1, 2010

Dear Ms. Graham,

This week, I received your fundraising letter in the mail. My husband and I intend to send in a contribution to your organization, as we fully support all the great work that you are doing.

I was troubled, however, by the following sentence in the second-to-last paragraph of your letter:

“We have found, over and over again that people with disabilities want the same thing that you and I want—family and friends, being connected to their community, and meaningful employment.”

The phrase “you and I” is set off in contrast to “people with disabilities,” as though the reader addressed as “you” could not possibly be a person with disabilities. Many of us who are disabled receive and read your letters, and being excluded from the audience of the letter does not engender a feeling of connection to our community.

Words have a great deal of power. Given that one in five Americans is disabled, and that all of us run the risk of becoming disabled at some point in our lives, we must remember that there is no “us” and “them” here. We are all in this together.

Sincerely yours,

Rachel Cohen-Rottenberg
Chapter Leader
Autistic Self Advocacy Network of Vermont

I’ll let you know whether I receive an answer.

© 2010 by Rachel Cohen-Rottenberg

I Am So Not Like the Other Soccer Moms!

Now that my daughter’s high school soccer career has drawn to a close, I’ve had some time to reflect upon the ways in which I fit in—and didn’t fit in—with the other parents.

Of course, when my daughter began playing soccer six years ago, I was right in the thick of things, chatting it up with the other moms. It was four years before my diagnosis, and Ashlynne had just started regular schooling, so I was very keen on being in the midst of it all. From the outset, though, three things set me apart:

1. For the first few years, I brought food for my daughter and her teammates to every game. Sometimes, another mother brought food, but I brought food every time. I mean, lunch at school started at 11:30 am, and the soccer games started at 3:30 pm, and those girls couldn’t play with their blood sugar running low, now could they? So I brought chips, or popcorn, or peanut butter and crackers, or graham crackers, or chocolate chip coookies, or whatever looked quick and delicious at the local market.

Once Ashlynne got older, I stopped, mainly because I wanted to give her space to be with her friends—and also because I figured out that the kids had brought food to school, and so the risk of their collapsing on the soccer field was minimal.

2. I tended to talk with Ashlynne and her teammates in a very down-to-earth way. For example, this fall, her team played a game that was just spectacular. The girls were passing to one another beautifully, and Ashlynne was making a series of fantastic saves in goal. After the game, I went over to Ashlynne and her best friend, and said, without any preface whatsoever, “Day-um! You guys were on fire today!”

Her friend looked at Ashlynne, smiled, and said, “I love your mom!”

Apparently, not all the soccer moms open up a conversation with “Day-um!”

Who knew?

3. Most of the other parents socialized during the game. Now, I tried socializing, too. I did. I sat in the bleachers with the other parents, and I did all right.

The problem was that most parents were so busy socializing that they missed what was going on in the game. They talked about anything and everything, and they rarely talked about soccer. My breakpoint came when one of the girls scored a goal, and her mother missed it completely. She stopped talking long enough to say, “Oh, did Lucy get a goal?” as though it were a distraction from why she had come. Then, she just picked up talking where she’d left off.

I just couldn’t understand why socializing took priority over watching the game, but I knew one thing for sure: I was there to watch my kid play soccer. So, I began spending each game on the sideline, camera in hand, taking photos and shouting encouragement to the team. When Ashlynne started playing goal, I’d stand on the sideline on her end of the field, snapping photos like crazy and shouting out support. I had a friend come to a game with me once, and she kept trying to talk to me through the entire game instead of watching it. I’m not sure how she missed that I’d invited her to watch my kid play soccer, but clearly, socializing was far more important than the action on the field.

Now, I will admit that it was a big relief to get away from the socializing, because it made the sensory experience of the game so much more enjoyable. But I know that my desire to have some peace and quiet to watch the game wasn’t just a sensory thing, because Bob did exactly what I did. He stood on the sideline, cheering the kids on, for exactly the same reasons. He was there to see the game, not to yack with other parents. At halftime, he’d go and schmooze with the other adults while I got some quiet time to myself, but other than that, we were both focused like proud parental laser beams on the game.

I’m very glad that I paid attention. It’s all gone so very quickly. It’s hard to believe that six years ago, Ashlynne ran from the ball, and that since then, she’s been named her team’s MVP, become a co-captain, and won this year’s Excellence in Soccer award at her school. I have a lot of good memories of watching her on the soccer field, and they’ll stay with me forever.

© 2010 by Rachel Cohen-Rottenberg

Happy Chanuka!


Tonight is the first night of Chanuka, and I’ve been busy making latkes nearly all day long. We’ll be lighting the candles and stuffing ourselves silly in a little while, so I just want to leave a quick note to wish everyone who celebrates it a very happy Chanuka. And all my best to everyone for a safe and enjoyable holiday season!

© 2010 by Rachel Cohen-Rottenberg