Sunday, November 28, 2010

Hearing Loss Profile: Lucy

This month's profile is of a young lady that lost her hearing when she was four-years-old due to unknown causes.  Lucy's blog, Life Inside These Hearing Aids, is one of my favorites!

Lucy's Story:

My audiologist – who has stuck around these last 24 years – still does not know exactly what happened. All we know is that all those little hair cells in your ear that are supposed to wave and dance and send sound to where it needs to be – mine are dead. Without my hearing aids – Phonak Nadia V digital aids – I can’t hear anything. But with my hearing aids, I can listen to music. I can tell the TV is on in the other room even though I can’t make out anything intelligible. I can carry on conversations and voice for myself.

Even though I’m an adult now, I’d still have to defer to my mom to tell you the range of my hearing loss. When you’re a kid, none of that stuff really matters – or makes much sense. My parents could tell you more about the technicalities. Just how much hearing I lost. How many ENTs and audiologists they visited before they found one across the street. The ridiculous things they heard (like I would never get past the third grade. Puh-leez. I have a college degree now). The decisions they agonized over. I was four. I had no idea what was happening. I just kind of went with it. I am pretty sure my biggest concern was whether or not I would still be able to watch Sesame Street. I had my priorities.

Since I was so young when I lost my hearing, my parents had to make a decision – cochlear implant or hearing aids? They chose hearing aids because they wanted me to make my own choice about whether to be implanted or not. I’m happy with my aids right now, but I know that a cochlear implant is a real possibility if or when I lose the rest of my hearing. I don’t know exactly how progressive my hearing loss is, but I had an audiogram a couple of years ago that indicated I had lost 10 percent of my hearing in the last 10 years. So, I’m savoring and appreciating what I have for as long as I have it.

I grew up on speech therapy, mainstreamed classes and interpreters. I attended an elementary school that had a Deaf Education department. There were some kids who were completely deaf that just took classes with the Deaf Education teachers. There were others, like me, who attended a session or two but spent the rest of our time mainstreamed in the regular classrooms with an interpreter. I don’t know what they do in schools now, but back in the day, we had FM systems. The teacher would have a microphone and I would have a special loop that I wore that would allow me to hear only her voice and not be overwhelmed by classroom chatter. Which would have been fine except the loop plugged into a small box that I had to wear. And in the late 80s/early90s, that meant wearing the box strapped to my chest. Embarrassing! Awkward! By the time I reached the upper grades, though, technology improved to where I could wear the box set clipped to my hip, string the wires under my shirt and attach them to my hearing aids or wear the loop around my neck.

I started homeschooling when I was in the 6th grade and honestly, the best thing about it was getting away from those ridiculous FM systems! Although my parents knew some sign language and my brothers could fingerspell, we weren’t really a signing family. I preferred to talk and demanded they not sign to me. I’m not quite sure where that animosity towards signing came from but to this day, I’d rather save my talking hands for other deaf or hard of hearing people. I don’t like to sign with hearing people unless they are interpreters.
When I got to college, I used interpreters in the classroom and asked that they interpret in CASE – Conceptually Accurate Signed English, which was basically ASL vocabulary with English grammar. Normally, I would have just notified the professor of my hearing loss, asked that he/she speak clearly and made sure I had a seat in the front row. But there was no way I would have been able to keep up with classroom discussion without an interpreter. I had a couple of classes where I used TypeWell – I wasn’t crazy about it because it fell too far behind and tended to summarize rather than provide word-for-word captioning. If I had known that CART was an option back then, I would have definitely asked for it. It’s much faster and more word-for-word.

I’ve never really understood why people say they have no regrets. I have lots of regrets about the way I handled my hearing loss. I tried to pretend it didn’t exist. I remember a pretty angry adolescence because I was frustrated with being left out but too proud to ask for help. I wish I had been more willing to acknowledge that my hearing loss affected me more than I wanted it to and been quicker to work with it instead of against it. I am thankful, however, to be learning from my mistakes, to be (more) willing to ask for help and reach out by networking with HLAA (Hearing Loss Association of America). Even writing my blog has been a step out of my comfort zone, but a good one. It’s a place for me to vent, work through hearing loss issues and meet other people who get it.

I wish I had been willing to meet hard of hearing adults when I was a child. My parents raised me well and taught me how to be an adult and prepared me to live independently and make good choices, but they couldn’t show me how to be a grown up with hearing loss. I needed to see adults with hearing aids live their lives. How do they ask for help? How do they get jobs? How do they function in society? I assumed that there was a lot I couldn’t do because I didn’t have those role models to show me that, in fact, there’s a lot I can do. So if I could do it all over again, I would have gotten involved with a hearing loss organization earlier on or sought out an older hard of hearing adult.

What I don’t regret is how my parents handled my hearing loss. They decided it would be best for me to make my own decision about a cochlear implant. They (mostly) respected my decision to speak and not sign. They recognized, probably even before I was mature enough to understand, that sometimes the best thing they could do for me was to let me have my alone time. It is exhausting – physically, mentally and emotionally tiring – to keep up with the world. To wonder what this noise or that was. To ask “what?” over and again. To guess, guess, guess what someone said. To fake understanding. So sometimes the best thing, contrary to popular child-rearing doctrine today, for me was an hour or two in front of the TV, with captions, to unwind and not have to concentrate so hard to understand. Time to read on my own. Let me and my imagination loose in the backyard.

I asked my mom, if she had to do it all over again, what would she do differently. She couldn’t come up with anything. “We just did what worked best for us,” she said. So don’t be afraid to do what is best for your child. There will be a lot of opinions and articles and thoughts and theories to wade through. Do what’s best for your child, for your family. And don’t feel guilty about it – or let anyone else make you feel that way. “Those people” are not the ones with your child’s hearing loss. This is your story and it will be different from theirs. Write it well.


Thanks Lucy!  I love your mom's advice.  I'm trying hard to follow it.

If you are deaf or hard of hearing and would like to be featured here at BTaC, or if you are a parent of a deaf or hard of hearing child, please send an email to bigteethclouds at gmail dot com to be interviewed.

Sunday, November 21, 2010

Staying in the elementary school loop

Julia quickly tires of my after-school questions. I have to wait for things to come out. It requires patience and restraint on my part.

In the first weeks I wanted her to report on the faculty's use of her FM system. Are they using it? Does it help her?

Julia was patient with me, but didn't reveal many details on the subject. I was almost relieved the morning I left the FM boots off of her hearing aids. At least the teacher noticed. That means she uses it!

Since consciously sabotaging equipment isn't a great plan, I've found a better way to stay in the loop during these elementary school years.

I spy.

I went deep under cover during my first spy mission as a parent-teacher group volunteer. I had to pack some boxes to clean up after the book fair, but the information I gathered in the school lobby was quite valuable.

A guy from our church was in the school to talk to the kids about trees. They took a walk around the playground to collect leaves. I took the opportunity to say "hello."

"I had Julia in my group yesterday," he told me. "They put the microphone on me and everything."

This is good. I spied and they passed!

I feel confident the school has adopted the assistive technology as a part of the daily routine. I'm happy. It's nice knowing what's going on, even if I have to occasionally do a little heavy lifting.

Sunday, November 7, 2010

Still surprised by (not) hearing

Julia was in the bathtub, hearing aids out, one afternoon. Someone rang the door bell. The dog went into watchdog barking-machine mode.

"What's Leia woofing at?" Julia asked.

Leia was downstairs woofing at a little neighbor girl that had come by to see if Julia could come out and play. It should have been one of those rare moments when it's actually nice having a child with hearing loss. Instead she heard the barking dog, knew someone was at the door, and embarked on an involved conversation about how she should be permitted to get right out of the tub to go talk to her friend.

These observations of my daughter's moderate-to-severe hearing loss have made me think hearing is our strangest sense. There is no telling what she will respond to with or without her hearing aids. There are so many variables.

Occasionally she detects a sound way outside of what I expect her to hear.  

Then with the hearing aids, at the crowded end of season soccer party, she doesn't flinch when I call her name.

There are no absolutes. After two and a half years, that is still surprising. I expect defined limits, like the old days of my blurry near sighted eyes.  Before my LASIK I knew how it would be every time I took off my glasses. The world was equally murky every time I looked at it.

The world of sound is different. I wonder if I'll ever get it, or if I'm always going to be surprised.