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.

Self-Advocacy

     In September, Hands & Voices New Mexico hosted a “Back to School” event
featuring a guest speaker, Rachel Kolb.  She is a Rhodes scholar who is currently
studying at Oxford, who happens to be deaf.  To continue this already impressive
biography, she attended Stanford University as an undergraduate; and she is a native New
Mexican.  When I first met her, she was kind and fun, and had lots of good information
to share.  If anyone is feeling down about their own hearing loss, she is an awesome person to connect with.  You can learn from her experience--virtually.
     Kolb has given two inspiring talks that I want to mention.  One is a TedX talk
at Stanford University, “Navigating deafness in a hearing world: Rachel Kolb,” http://
tedx.stanford.edu/2013/speakers/rachel-kolb/.  During this presentation she shared some
of the difficulties she faced, and that are common among people with hearing loss, such
as sounding foreign instead of being a native English speaker.  This has happened
to me and will be a story for later, but on the bright side, at least people thinks you are very international.  Another talk that she presented at the New Mexico Museum of Natural Science and History was about self-advocacy: http://www.youtube.com/watch?v=BjEJ7xQOBRE.  It is also on New Mexico Hands & Voices website, hvnm.org.
     This last presentation I got to see in person.  Self-advocacy cannot be emphasized
enough.  It is perhaps the most important life-skill in the world for everyone to learn, besides
kindness and love.  This is true especially if you have a hardship of any sort, especially a
hearing loss.  Kolb had five key points which I am going to quote here (but you
should really watch the entire video) along with my own thoughts on her points.
            1.  "Find the strategies that work for you."  This could mean anything from sitting
in a certain spot in class or signing versus speaking.  It does not matter what kind of
strategies they are or if it is the same as anyone else's; everyone is different.
            2.  "Find people who support you." Friends and family are people who fall into
this category.  Teachers and classmates should also fall into this category (although in
that case, they would also be your friends, no matter how much homework teachers
gives you).  However, some teachers and classmates don’t always support you.  If they
don't give you the slightest support, then do your best to avoid them.  They are not the
people you want to be counting on.
            3.  "Invest in yourself."  This could mean getting hearing aids, or a sign language
interpreter, and whatever other tools you need.
            4.  "Learn how to express what you need."  This would mean asking for what you
need.  You could ask for something as simple as a set of notes for a class, or speech
therapy, or (I find that this is the hardest) asking people to face you when speaking.
            5.  "Say [or in whatever communication mode that works for you] something:"
This is a reiteration of her fourth thought, but it is important, which is why she repeated it.  You have to speak up in order to advocate for yourself.  You cannot remain
silent.
     One last note to make on self-advocacy.  Be patient with your AWESOME Mom, or Dad or guardian as you develop your self-advocacy skills.  They have been advocating for you since you were a baby (since it is kind of hard for a baby to say anything in it defense except look cute).  Sometimes it's hard for them to accept you are growing up!  And be sure to thank everyone who supported you!
     These points are great to know for life, whether you are deaf or hard-of-hearing or

not.  As I said earlier, self-advocacy is a skill that will be used daily!

Back to School!!!!!

     Hey everybody!  School started (hence the delay in August blog posting!)  Time to clean up the workspace for homework, dig out that backpack, make new friends, meet new teachers, and learn new things.  I know, everyone thinks I am crazy for loving school.  I am more enthusiastic about this new school year than most.  Maybe a little too enthusiastic...

     This year I am taking three AP classes and an Honors class in addition to Latin III, Pre-Calculus and Orchestra.  (I know, “What was I thinking?!!”)  I am optimistically hopeful that this year will go well.  Of course, even though I love school, it is so very, very hard, because I catch only about 60% of what teachers say and 40% of what students say every day.  With the FM microphone, I can catch infinitely more than I could with hearing aids alone, but it is not always enough.  It’s also not something I use with my friends during social situations, although maybe I should experiment with having them use it during down times.  Hmm…. Maybe I should try it in the cafeteria some time.  Now that I have thought of it, I think I will!

     In order to catch and understand everything that most everyone else hears naturally, I use a variety of techniques that I have learned over the years, which include not only the FM microphone, but classroom positions, schedules, notes, etc.  My techniques are listed in Table 1, along with pros and cons.  Everything is included in my IEP, and we talk to new teachers at the beginning of each school year about these techniques, some of which can be used to help others even if they don't have a hearing loss.  I’ve started to email these techniques, along with an audiogram showing my hearing loss that exists even with the hearing aids, the “Instructional Accommodations or Modifications” page of my IEP, and a short summary explaining my audiogram and accommodations to my future teachers in advance of the school year so they can think about how to provide the best access to the material and communications for me.  Last year a teacher rearranged the classroom for group discussions so I could read everyone’s lips.

     With all of these techniques and accommodations, I am able to understand more.  However, there are still some additional things that I could use to access communication, but for a variety of reasons I choose not to use them at this time, and they are listed in Table 2.  On the other hand these methods could work for you.  Keep in mind, that these techniques may or may not work depending on the circumstances and your preferences.  I hope that you or someone else you know can use some of these techniques to help not only in school, but with life in general.  I would love to hear what other accommodations you have found work for you, so I might try them and I can add them to the list for others to share. 

Table 1:  Techniques I use:

Technique	Pros	Cons	Other factors
FM Microphone	Small, direct feed to my hearing aids by wearer, either teacher or other students	Need to remember to charge, has to be turned on and off appropriately, overrides hearing aid microphones, sometimes static-y	My current microphone is not a true FM system anymore, but a streaming Bluetooth microphone
Preferential Seating	Enables me to lip-read, keeps me away from excess background noise	Can get tricky with group discussions	Need to consider if teacher is right handed or left handed when selecting seat
Note-taking help	Since you can’t lip read and write at the same time, teacher’s check my notes or provide a copy of notes to make sure I catch everything	I have to remember to check in with the teacher, which can be time-consuming	I could ask for a “Note-taker” but so far I'm managing on my own with teachers' help
Close Captioning for films	I have access to what the movie is communicating, helps other students too!	It can be tricky with old equipment or old videos, especially VHS tapes	With movies that are too old to have CC, my teachers have looked for a film synopsis or transcript to give me.  Be sure classroom has a newer TV
Minimize Group Projects or Number in a Group	Very difficult for me to communicate with more than one person at a time, so this makes it easier for me to participate	Sometimes it just isn’t possible due to lab equipment availability	I need to advocate for myself with group partners more
Extended time for Testing	Provides extra time to match grammatical endings	No cons come to mind about this one	I have a high-frequency hearing loss and don’t hear the “s” “ed” and other sounds that define speech, even with my hearing aids
Extended time for Homework (*I only use this once or twice a year)	Listening to people speak all day is exhausting, so sometimes I’m wiped out at the end of the day.  It gives me a chance to recover	If I don’t turn in my homework on time, it only delays the inevitable and creates a backlog of work	I work very hard to keep up with my peers

Table 2:  Techniques I do not use at this time:

Technique	Pros	Reason I’m not using
ASL Interpreters	Have real time visual communication	I’m not fluent in ASL
CART Interpretation	Have visual communication, with slight time delay	Technology is newer, and I’m managing on my own right now with the microphone alone
Cued Speech Interpreters	Helps with the grammatical endings I don’t hear	Not common in NM, would be difficult to find Interpreter and I’m not fluent in Cued Speech

The Grocery List

     Sorry for the belated August blog posting.  School ... ya know?  

     I am going to tell you a funny story that had happened to me recently.  You might have had a similar experience at some point:

The Grocery List

     Dad picked you up from cross country practice and the two of you are on the way home.  You always call Mom to let her know you and Dad were on the way home, but mostly to find out what was for dinner and to decide if it was acceptable.  If the announced meal plan was not acceptable, then you and Dad swing by the grocery to buy food for a “good” dinner (“good” as determined by you and dad, i.e. no broccoli and more ice cream!)  So, on this day, you call Mom and you ask "What's for dinner?"

     Mom replies, "Pizza, but we are missing some ingredients."  Mom listed the ingredients that were needed for pizza, you are able to catch all of it, because you have helped make a lot of pizza and know the ingredients necessary for pizza.  But then, Mom told you there were some other items needed.

     Mom lists the first item.  It flew right over your head.  You ask her to repeat it.  She did.  From the sounds you could hear, you hazard a guess.

     "Silk?" you asked.

     Dad, who is driving, started laughing (not at you though), "No silk on the pizza!"  He was the master chef of pizza.

     Mom replied no, and she repeated the word again.

     "Oap?" you asked again, clueless.

     At this point, Dad laughed and listened in the phone conversation to help you.

     Third time really is a charm.  "Soap."

     Dad laughed again, "No soap on the pizza!"

     Now you figured out one item, you listened for the next.  Once again, it flew over your head.

     "Ba-Ba-Bar?"  You burst out laughing.  That could not be it.  Mom is hard-of-hearing, too, and this time she was confused also.

     You try again to figure out the word with Mom.  Mom repeated the sounds; you hazard another guess.

     "Garlic chives?" you asked.

     Dad looks puzzled.  Mom replied “no” again and repeated the words.

     Once again, third time is a charm.  "Oh! Garbage bags!"

     Dad laughed

     Mom said yes.  Now that you had the complete list, it was time to go off to the grocery.

     Afterward, Mom and I talked about this little miscommunication.  We were actually surprised that the cellular conversation was not more confusing; we came up with a list of words that we could have confused with garbage bags, words that were about three syllables long, that could be found in a grocery, that begin with a 'g' or a 'b', and that end in an ‘s’.  It was a sizable list: garbonzo beans, green snow peas, grocery bags, buffalo wings.  If that happened again, Mom and I decided, we would just text each other the list or word.