Uh-Oh!

     

It's the most wonderful time of the year.
     We have family visiting, presents to open, memories to share, and a sweet dog to torture.  (I had a little too much fun making my dog miserable by putting a Santa Claus hat on him.  Poor li'l fella!)  This holiday season has been great to say the least; my uncle is staying with us, I received a pair of orange boots, and we all went skiing in Taos.  Needless to say, it has been a blast!
     Just the other night, we were all having pizza made by my fabulous dad, and the dinner conversation somehow worked its way to my birth and the discovery of my hearing loss.  Now, I was already familiar with the story of how my parents learned about my hearing loss - I wasn't meeting the normal milestones for regular babies, and they took me to the doctor at 15 months and confirmed my hearing problems - but, I once again realized, there was more to the story than simply a failed audiogram.
     I was born the perfect little baby girl in Virginia, before they had newborn screenings.  I can honestly say that I don't really care about how early they caught my hearing loss or how if they caught it earlier, I would have "more perfect speech."  I don't care about my early baby development not meeting all milestones; I don't remember the panic my parents were going through.  I was a baby; ignorance was bliss.  I'm here; I'm doing well in school; I have a wonderful dog (thanks to my hearing loss) that I occasionally torture with bath-times and Santa hats (I should also mention that he is very forgiving).
     As a passing thought, my parents might have wished that the newborn screening caught my hearing loss earlier.  My mom was freaking out that I wasn't speaking at the normal age or responding to my name.  They recounted over dinner conversation how, unbeknownst to them, I was showing all the sign of a high-frequency hearing loss.  I ran around with my arms up to help balance myself.  Inner ears are a key component of balance, and since mine are whack, I used my arms to help balance.  (Luckily, I don't run around like that anymore!)  When I went to my grandparents' house, I would play their piano, but only on the left side, where the low notes are.  Now they realize I was trying to say "Hey! Something's wrong!  I can only hear these notes."
     So when I was 15 months, they took me to the doctor who did some testing and then broke the news to them that I was hard of hearing.  To my mind, they were more than a bit melodramatic about the news.  It was the worst thing in the world, a real tragedy.  What put this situation in perspective for them, and saved me from certain misery about my "tragic" situation, was that this testing was done in a children's hospital.  If you go into the ICU ward of a children's hospital (as I did one unlucky winter when I had pneumonia), you see bald babies with IVs, and children who should be out playing, but are tethered to bunches of medical equipment.  That's more or less what they saw in that hospital, children battling cancer or some other life-threatening problem.  That's when they realized that I'm lucky.  A hearing loss is a boo-boo compared to a tumor.
     After that hospital visit, they developed that "can-do" attitude.  Their exact words at the dinner table were "This [hearing loss] is nothing.  We can do this."  Both parents being over-educated, they did lots of research into the deaf world, assistive technology, and took me to see audiologists and other specialists.  And they decided that I would go to a mainstream school with speech therapy and the oh-so-wonderful (not) hearing aids.
     The hearing aid decision brings me to my favorite story of my early years.  My parents were discussing hearing aids with my aunt when my older cousin Ian overheard them and said "uh-oh."  I repeated after him.  And then I was running around my aunt's house with my hands in the air saying "uh-oh."  That was my first word, and it has since become my favorite word due to the many applications of "uh-oh" in my life.
     So, that brings me to the conclusion of this reflection.  This holiday season is very fun, but it is full of uh-ohs.  On top of the elaborate food preparation, I have college essays to write!

Happy Holidays!

Thanksgiving!

Thanksgiving! A Blessing from a Curse...
Over the years, I have gained a better understanding of how much being deaf hurts me.  For starters, I cannot hear birds chirping, friends calling, high harmonics playing, etc...  There are so many bad things and faults which I can pin on my hearing loss and hearing aids.  I can blame my paranoia around water on them; I can blame my social awkwardness on them; I can blame lack of money in my college fund on them; I can blame all sort of things on deafness and hearing aids.  But there is one thing that I could blame them for but I won't blame them - instead I want to thank them.  I could blame my dog on my deafness.
Before I continue, with how deafness rose from being a curse to a blessing, let me introduce you to my dog, Oreo. You may be familiar with him from “The Talk” already.  He’s one big bundle of love and trouble.  He’s both mischievous and sweet.  He loves eating kleenex and food, along with sharing the loving and taking naps.  He’s part of our family, and nothing can ever change that now; however, if I was born hearing, he would have never been part of our family.
Here’s what would have happened if I was born hearing.  My parents would rejoice at having a healthy little baby girl.  I would grow up normal-ish, maybe my speech would be perfect and I would be the popular girl at high school (wishful thinking here).  I’m sure at some point I would have asked for a dog, or a cat, or a pony; I may even have begged to have a four-legged creature to become part of the family.  But the answer would always be the same, no.
My mom grew up having zero pets.  Animals were intimidating to take care of; a horse was too big; my mom was allergic to cats; and dogs were too mischievous.

Now when my parents got married, my dad had to agree to three things - no trucks, no moving to New Mexico, and absolutely no dogs!  Well, I already told you I’m a New Mexican, and we have a dog, and there’s a truck in the driveway of my house.

When my parents learned I was deaf, they did all the research to find the right audiologist, the support groups, and the accommodations needed for deaf children, including, possibly, a hearing dog.  By the time we moved to New Mexico and I was in grade school, I really wanted a dog.  I was too young to meet the criteria for an official hearing dog, so my parents decided to get a dog to be a hearing buddy for me.  Oreo was a sweet puppy, fitting easily in my dad’s hand and my arms.  We potty trained him and took him to puppy kindergarten.  When he was ready to begin training as a hearing dog, we discovered that the hearing dog trainer in New Mexico had left the state!  Now what should we do with a dog who barks at mailman and get into trash cans?  Our answer, turn him into a family member.

He never turned into a hearing dog, but he’s a lap dog, a loving dog, a bio-vacuum, a dog to cry on, a party entertainer, and a great quasi-brother.  I can not imagine my family without him, but we would never have gotten him, if it was not for my deafness.  So this Thanksgiving, I am thankful for my deafness and most especially, Oreo.  Thank you Oreo!

Accidental Bad Words

     People mispronounce words all the time.  I am sure that more than a few people will agree with me when I say that sometimes an accent of any kind, not just deaf accents, will cause mispronounced words to sound like words with entirely different meanings.  Hearing people may experience this word mishap when they are trying to learn another language, but my experience takes place in my own tongue, English.
     This mispronunciation issue first occurred to me in second grade.  A boy in my class was talking behind my back.  I had no idea what he was saying since I could not read his lips.  So I faced him and asked what was he talking about.  He told me I said a bad word.  I was terrified, as a second grader.  I didn't even know that bad words existed!  Now that I'm older, I know some bad words, but then, I didn't know which words were bad.  Was 'bad' a bad word?  He reassured me that he would not tell the teacher and the incident was swept under the rug.  From that point on, I was a devoted non-cusser, or so I thought.
     Fast forward to ninth grade speech therapy, where the focus was on clarifying the difference between 's' and 'sh.'  My therapist introduced me to a computer app (DragonSpeak) that would write down everything it heard me say.  We started with some simple words, like 'acid', 'faucet', and 'sit.'  Seems easy enough.  What I didn't know until I started speaking into the app, was that my 's' sounds more like 'sh.'  So I went through the list above, and the computer wrote instead 'I said,' (not 'acid') "f*** sh** (ooh, two bad words!), and "sh**.'  Imagine my horror that when I try to say something simple like sit, I end up saying one of the most common bad words of all time.  Gack!  I was afraid the computer would wash my mouth out with anti-viral software.
     Luckily, my wonderful therapist reassured me.  Most people would figure out what I was trying to say from the context of the sentence instead of taking offense.  I was relieved to hear that, but figured it was better to not have that problem in the first place.  Imagine if I told a new friend "sit over there and I'll join you."  Eek!
     Now, nearly three years after I discovered my accidental bad words, and with lots of speech therapy and practice, I can say my speech pronunciation is much improved.  I can go through the same list again and the app picks up what I say perfectly.  Hard work and determination does pay off!

Me As A 9th Grader

     Introduction:  When I finally (!) cleaned up my room, I found this paper I started writing about three years ago, when I was starting freshman year in high school.  It's not complete, but I decided to leave it as close to the original writing as possible, because I think it provides valuable insight in my first few days as a freshman.

Me as a 9th grader

     My first day of school began as most first days do.  Excited, meeting teachers, and having little conversations with people you haven't seen all summer.  After school, I ran with people from cross country.  During the first week of school, I received my first assignment and figured out the bus schedule.

     I met new people, and they try to have a conversation with me.  I try too, but after awhile I could not understand them any more.  Then, I would try to show I'm listening and say "hmm-mmm," "I don't know," or "maybe."  It's so easy to talk, but not so easy to listen.

     After the next few weeks, people talk to me less, or is it I who talk to people less?  But I was doing fairly well in school.  Soon in Physics, we learned kinematics.  It was hard to grasp, and looking back a month later, I think I need to review it.  At cross country, people talk to me less, but I listen more.  One may say I was eavesdropping, but I don't understand that much and no one will have a face-to-face conversation with me.  The little sounds that I do understand are very heartening.
     A few weeks after school started, I would have speech therapy every Thursday, after school, before cross country practice.  In the first marking period, I did accidently skipped one meeting because I forgot it.  Through my speech teacher, I learned of an iPad app that put exactly what I said on paper.  I tried to say "acid," but always manage to say "I said."  A few weeks later, it occurs to me how terrible, unintelligible I must sound to someone who had never heard me before.

     Closing:  I'm happy to say that now I am able to communicate more with others and they with me; I understand kinematics; and I am still running!

Back To School!

     Everybody having fun going back to school?  I am.  One thing about being Deaf or Hard of Hearing, is that we need support at school to access education.  That’s the primary reason I have an IEP, Individualized Education Plan, which is a formal, legal document that specifies what accommodations the school will provide.

     The IEP is a very long document, my last one was 20+ pages long, and has a lot of boilerplate information included.  What I have found most useful for my teachers to get a quick and better understanding of what I need, is to send them the one page “Instructional Accommodations or Modifications” page, located somewhere in the middle of the IEP.  I also send along a few other documents and links, including, but not limited to, suggested classroom accommodations (which one teacher told me helps everyone in class, not just D/HH students), a visual audiogram showing pictures of sounds demonstrating frequencies, loudness, and the speech banana (where common sounds of the English language occur), links to some YouTube videos and this blog.  I think the teachers like the YouTube videos, because they're engaging tutorials and YouTube recommends other related videos.  I like them because they get the point across.

      I used to present all this information to my teachers right before school started, but now I find it more practical to send this out at the end of the previous year, so that teachers can think about their classroom structure.  For instance, in some classes, there may be a lot of heated discussions.  Multiple people talking (or debating) at once is very difficult for me to follow.  It might be difficult for everyone else to follow, but it is especially difficult for me since I rely on lip reading.  One of my teachers worked out a system where she clipped my FM microphone onto a beanie baby, and only the person with the beanie baby could speak.  It worked pretty well, until some conversations got a little intense!

      The links I share with teachers are:

• Example of improvements to understanding I get with the FM Microphone. The last example in this link shows the usage in a classroom setting.http://facstaff.uww.edu/bradleys/radio/fm/

• Presentation I attended last fall (see September 2013 blog) that talks about getting access to communication and advocating.https://www.youtube.com/watch?v=BjEJ7xQOBRE

• Example showing the difference between normal hearing and mild, moderate, and severe hearing losses.  It’s very cool, because how often do you see a popular cartoon as an educational tool anyway?  House Ear shows the difference between hearing losses.  The cool part is that I don't hear any difference between them without hearing aids, but a person with regular hearing can hear significant differences between each segment.  I should also note that even with my hearing aids in use, I only hear in the moderate range.  With hearing aids, I can detect the volume difference between the segments, but not much more.  I also caught myself trying to lip-read the cartoon characters.https://www.youtube.com/watch?v=TvK41KVn4eQ

• Article explaining how exhausting lip reading can be.  Rachel Kolb, who did the presentation referred to above and appeared in Stanford Magazine, wrote this and I think it a great explanation of what D/HH students have to go through in all environments with speech.Lipreading Article

Prom Analysis

~ “The only thing we have to fear is fear itself.”  ~ Franklin D. Roosevelt.

      Last month, I went to my high school’s prom.  If you have ever been to a noisy dance before, you know what I am talking about when I say party hub-bub can be very uncomfortable with hearing aids.  In addition to the noise, there is also a lot of nervous anxiety, fear of the unknown, and chaos that have led me to avoid these types of social situations.  Last spring I had heard girls talking about attending prom, shopping for dresses, making dinner plans, dancing, etc…  It all sounded like a lot of fun, so I decided I wanted to go.  But I almost didn’t go at the last minute.  Due to fear.
      If you read last month’s blog posting, you will see that at first, going to prom was nerve wracking, and at the end I was very tired and went home.  But, in the middle, I did all right.  Not only did I survive the social minefield, but in the end, I also had some fun.  To me, going to prom was a milestone in my social development.  And I wondered exactly what I had been afraid of.  So I decided to analyze the situation.
      Before the prom, I had great fun shopping for a dress and shoes and figuring out how to do my hair and makeup.  On the day of the prom, that’s when I started to get nervous.  As the departure time became more imminent, I became more and more stressed.  I wasn’t really worried about my looks, more the sheer anxiety that accompanies anything new.  I started looking for an excuse to get out of it; it took a lot of effort to work up the courage and walk into that party and just be there.  But as the evening wore on, I became more relaxed and started to enjoy myself.  It’s like a chemical reaction – you need activation energy to get over the energy barriers before having any reaction at all.
      I realized I spent a lot of energy worrying about what was going to happen, and once I got there, and nothing bad happened, then I could relax.  Here are some things that went well, and helped me to get over my initial fears.  I thought sharing these tips might help you overcome a new social situation as well.
      Things that went well at prom include the food, of course.  Try the food.  If you’re really nervous, the cookies and brownies can be your comfort and energizing food.
      Another thing that went really well was the dancing.  I tried some experiments on the dance floor, being the scientist that I want to be.  Even if you can’t hear the music well, you can still enjoy it and the dancing, depending on how good the floors and walls transmit vibrations.  I found that at my school, not only the walls, but also the floors transmitted the vibration of the music really well.  Some music has a heavy beat that really stands out in the vibration being used as the tempo of the dance.  Give dancing and music a try, you might like it, even if it feels weird at first.
      I was happy to learn I had more friends than I realized. As you might be able to pick up from last month’s narrative, I had friends there, good ones.  The couple from the running team, the random group of people, the adult chaperones, the classmates – they’re all my friends; they could be yours as well at your school.  In the future, I would try to arrive with a friend, or at least arrange to meet some there.  I went alone, which went okay, but it would be very nice, going into the party, to know there’s a friend at your side. 
     Also, if you really want to party all night (or as late as the school will allow it), it would be very helpful to take a nap before prom. 
     Lastly, relax, try to have fun, and make the most of your experience. 
     All in all, I am glad I went to prom.  It was a fun learning experience, and I hope to have equal or greater fun when I go next year.  In the end, I realized that the only thing I had to fear was … nothing.

Prom Narrative

To quote one of my favorite TV detectives (Monk):

Here's what happened...

     At approximately 9PM, I watch a few people going to the prom enter the common room; then I work up my courage and follow.  After showing my ticket and entering the commons area, I mention to a friendly adult chaperone that I had never been to prom before and ask, "what should I do?"  “Food is downstairs and the dancing is in the theater,” came the reply.  Okay, easy enough.  I go downstairs, where only a couple of people have gathered.  It is early, so early, that the party had barely started, and the only people I knew in the room were the adults.  I panic, pace-walk into the bathroom, slip out my phone, and call my 24-7 counselor (a.k.a. Mom) for guidance.  She reassures me, advises me, and encourages me to "get back on the battlefield."
     Okay, I can do this.  Go back out.  Look at the food, take a cookie, look around again for a friendly face, see not one, pace-walk back into the bathroom again.  It has been 5-10 minutes since I walked into prom.  I call Mom.  Poor Mom.  She was hoping to watch a TV episode at a friend's house.  Sorry Mom.
     Thank you Mom.  She reassures me again, advises me again, and encourages me again.  “Try dancing.”  Thank you again Mom.  I go to the dance floor.  It's beautiful: golden balloons, colorful lights, dancing music.  I watch and listen.  I move a little to the music.  Then the “Cha-Cha Slide” comes on.  Everyone joins in and dances to that.  So do I.
     The second song is a slow "romantic couple" song, but people still dance in groups.  I am not in a group.  I watch; I move to the beat; I try an experiment to see if the vibrations of the music through the floor change from place to place.
     A girl from a group saw that I was dancing alone.  She moves towards me and dances along, asking her group to include me.  I am thankful.  We dance a lively dance to a slow song, and it was fun, even though the tempo of the dance differs vastly from the song.  After two songs, the group dispersed.  I stand off to the side again, watching.
     A couple from running team sees me.  They invite me to dance with them.  I am lucky I have good friends like these – even though they are on a date with each other, but they still went the extra mile (!) to include me.  We dance for a song or two.
     About this time I start getting a little tired.  I stay for another song; then leave the dance floor to the commons area.  I take another cookie.  I look around.  Now there are a lot more people, but they look and sound a bit intimidating.  It's too noisy.  I panic, I pace-walk to the bathroom again.  Even the bathroom is hopping!
     I wait before calling.  It’s too noisy, not ideal for phone calls.  People here are having a good time.  The bathroom is also a place of touching up here and there, adjusting dresses, exchanging small gossips.  I know quite a few people there.
     "Oh, we went to so-and-so a restaurant.  Did you go anywhere?""Ooo, I love your hairdo!  How do you do it?""Your dress is fabulous!""Thanks, yours is too."
     The bathroom does clear itself in a couple of minutes, after all, the food and boys were outside.  I call Mom.  At least, she had 25 minutes of uninterrupted time!  I'm ready to go home.  She will be there in five minutes.  A girl from my class overhears me.  She waits patiently.  I finish the call as quickly as possible; I hope I don't seem rude.  She invites me to stay with her group.  I am lucky I have good friends.  I thank her, but decline in hopefully the most respectable way possible.  Everything is great, but I am too tired.  She smiles and says goodbye.
     I go out to confront the commons area once again.  It seems a little friendlier now.  I grab one more brownie.  Comfort food.  I need it.  I go upstairs.  More people are still flooding in.  Mom should be out in the parking lot by now.  Once I leave, I cannot be readmitted.  I am done anyways.  The building is suffocating me.
     Only outside in the nippy air, do I realize that it was hot inside.  The dark night is an indication of how late it was.  In the car, I collapse in the seat.  It is also way past my normal bedtime.  Mom and I visit the friend whose house Mom stayed at while waiting for me.  Both Mom and her friend praise me for be so brave, they never went to prom.  Maybe I am brave, but I can't see that while I am tired.  Maybe tomorrow, I will see and be a little bit braver on the social battlefield for it.

Science Fair!

     Do you love science?  I do.  I just finished a round of science fairs in New Mexico.  There was a county fair, a regional fair, and then on to the state fair.  Woo-hoo!  It was fun!
     I cannot help you decide what to do for a science fair project, you have to find your own passion.  You might ask a teacher, consult a book, or surf the web for some ideas.  Take your pick.  What I can help you with is how to present confidently, despite having a hearing loss, with some suggestions.  Whatever project you decide to do, you should be interested in the topic, learn something new, and have fun!
     First things first.  Make the science fair organizer aware of what you need and why you need it ahead of time.  I send a copy of the list below with a short explanation that I am deaf in high frequencies to the organizer.  Many of the accommodations needed for science fairs are the same things you need in school.  It might help to send a copy of your IEP or 504 Plan and highlight what you really need if there are any questions.
     This is what I ask for:

• Positioning the board in a corner, or at least along the perimeter of the space.  (This reduces background noise.)
• Having the judges or anyone else speak clearly and face to face.  (This helps with for lipreading.)
• Making sure you are aware that a judge is speaking to you.  (As it will be very loud in the space, I may turn off my hearing aid to cope with noise levels, but if judges tap me on the shoulder before asking questions, that'll be my cue to turn my hearing aids back on.)
• Explaining in person any announcements that are made over a loud speaker, i.e. where are the rest rooms, water fountain, break time, etc...  (No one hears loud speaker announcements very well!)
• Rephrasing a question.  (If you don't understand the words, the judge speaking louder won't help if the word is too similar to something else or has high frequency sounds.)
• Writing a question if all else fails.  (You should keep some 3 x 5 cards at the ready for this purpose.)
• Having the microphone at ready for the judges to use.  (I take my FM microphone system to use if needed.)
• Making the judges aware that pronunciation of high frequency sounds is not 100%.   (Since part of the judging is based on oral delivery, they need to be aware that specific sounds are frequently left off in speech, so that they will not score negatively for pronunciation.  It's not that I don't know the words, I just don't hear them normally, and therefore my pronunciation is off.)

     An example of problems I have encountered is words that sound similar and are reasonable in the context of my science fair projects.  I have mixed up "eclipse" vs. "ellipse," both of which sound and lipread the same to me.  Other examples: "Newton's third law" and "nuclear thermal energy."  Most recently, I was asked a question concerning the "mass" of an object, and I thought the interviewer asked about the "math" of an object.  If I have a doubt about the word, I usually restate the question I heard, or ask the judge to repeat, or rephrase, the question.

     Above all, your hearing loss should not affect you ability to do science fairs.  In fact, you could even do a project that relates to hearing, with inspiration from your own life.  Judges love to know that you are doing something with passion!
     Best of luck on your project, and have fun!

Doll's hearing aids

     When I was very little, my mom bought an “American Girl Bitty Baby” for me. She 

wrote to the company and asked them to make hearing aids for the dolls…. Ten plus
years later, they finally did just that.
     You can now get hearing aids for your American Girl doll. Now you do have to send
your doll in to get a hole drilled in for the hearing aids, but it is a fabulous way to
make a doll even more like you. I checked some other sites, and it is possible to get
hearing aids for “Twinn Dolls” and even “Build-A-Bear” toys.
     If you don’t want to get a hole drilled into your doll’s head or your favorite doll
doesn’t have that same offer, that’s okay too. Since this wasn’t available when I was
playing with dolls, Mom and I came up with other ways to give hearing aids to a doll.

• First option: Ask your audiologist if they have a hearing aid shell, perhaps like one of the hearing aids on display. This way you don’t have to pay thousands of dollars on a new hearing aid for the purpose of your doll having one.
• Second option: Use some of the polymer clay that bakes in the oven and make your own hearing aid shaped device. This way you can alter the size to fit the doll, making it smaller or bigger than real hearing aids.

     Then, add some of your old tubing to make the connection to the ear, and use glue or
a sticky tape (like a wall tape, where it is sticky on both side) and attach the hearing
aid shell behind the doll’s ear.
     If you want to design a cochlear implant, you could use a hearing aid shell and get
crafty: perhaps use a small flexible pipe or a short strand of metallicized thread
attached to a circular pin.
     Here are some links to some manufactured hearing aids for dolls:

• http://store.americangirl.com/agshop/static/dollHospital.jsp
• http://www.mytwinn.com/Doll-Hospital/Hospital-Accessories_2/My-Twinn-Doll-Hearing-Aid.html
• http://www.buildabear.com/shopping/store/Plush-Hearing-Aid-/productId=prod81549