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

Happy Holidays!

     Hello Everybody!

     Happy Hanukkah!  Merry Christmas!  Happy New Years!  And Happy Any-other-joyous-holidays-that-I-am-forgetting!

     Also, please accept my sincerest apologies for not writing as regularly as I would have liked.  This has been my most challenging year ever!  It is rather hard to find free time to use for writing when you are studying for seven equally hard classes and on top of all those classes, cross country running and science fair.  
     My New Year's resolution is to write more timely (I would not hold my breath though, but ideally there should be at least one post per month or twelve posts per year) while staying on top of schoolwork.

     Please contact me via blogsite (comments are not published immediately and so you have the opportunity to be anonymous if you like) and let me know what topics you'd like to see addressed or perhaps share your own thoughts or stories relating to the D/HH world.  Chances are if you have lived it, others, including myself, have too.  Would love to hear from you about your challenges and triumphs.
     Now back to Science Fair and AP homework!
     Best wishes for 2014!!!

My First Language is Garbled

This is the story that I mentioned last month when I was talking about foreign accents. This may have happened to you at some point.  Hopefully you will laugh or smile at the similarities to your own situation.
It was crunch time for a paper and I wanted to do my best.  My high school has a writing center where anyone can sign up for help with Language Arts assignments.  So, I stopped by and signed up for an appointment for someone to look at my paper.  The teacher who was working during the time of my appointment had a noticeable foreign accent, almost like English was her second language. Yet, despite this possible fact, she was very good at catching both sentences that did not make sense and grammatical errors.  But the killer was not that I had a lot of mistakes in my paper, but when she came to talk me through the draft the first thing she ask me was, "Is English your second language?"
Now, I want to make one thing clear before I continue.  English was my first and only language up until a couple of years of ago when I started learning a little bit of ASL, Spanish, and Latin, but, even today, spoken English is my primary language.  So when she asked me that, I was thinking to myself, "What?!  I can only speak English!  What does she mean?”  I thought I had relatively good English for a native English speaker.
She could probably tell that I was puzzled, because she patted my arms and said "It's very good, but there are a few things here and there that you need to clear up.  For example, most English speakers would not say this phrase, instead they would say it this way.  You see what I mean?"  And so she walked me through the paper, pointing out things that native English speakers would normally not do as well as mistakes that are common to all English speakers.  In this way, she helped me improve not only my paper, but also my regular English.
I think that was the first time it really struck me that my speech and writing were impacted by my hearing loss.  This situation was not the first time someone asked me if I spoke another language.  One time someone asked me what kind of accent I had.  The truth, I realized later, was that I had a deaf accent.
Upon further reflection, I discovered what was truly my first language.  It happened during a start of school meeting with new teachers.  I was asked to explain to the teachers what I heard and a the definition of a new language clicked into my head and I said "My first language is Garbled."  For a lot of teachers, that explained everything.  I can hear, but I am not always hearing sounds that make up coherent words, even with the use of my hearing aids and FM microphone system.  Most likely it is garbled that no one understands; sometimes even I don't understand it.