We received a letter from a teen who wanted her voice to be heard.
Read on and enjoy,
deafteens.org
“Hi. My name is Kaitlyn, and I am literally hearing impaired. I was born deaf.
I am in high school, about to be a senior and still don’t know what college and major I want for my future. And I am also a member of the Church of Jesus Christ of Latter Day Saint (others call us Mormons).
My life as a hearing impaired…I hated it at first, wearing this big fat rectangular thing that hangs on my back to school. (That’s technology back then, you know) Now, I wear a wireless Cochlear Implant on my right ear. I think it’s so embarrassing wearing it in public schools and my classmates make fun of me. But after some time, to my surprise, my friends now think it is really cool.
Just remember, be who you are.  If I could, I don’t think I would change being deaf. It is simply a part of who I am. I have eyes to see and my heart to hear.
So, don’t change who you are. Being you changes everything. That’s what brings everyone to look at you and see you as courageous, brave, trustworthy, loyal, compassionate, and a leader.
That is my story.
Kaitlyn”
“Being deaf/hard of hearing is not easy but if we embrace it we can become something extraordinary! Just take one day at a time.” -David Cluff, Founder & Director of deafteens.org

Hey, deaf teens and readers! Lesley here! I recently attended a wonderful program for teens with hearing loss
called LOFT (Leadership Opportunities For Teens), sponsored by the AG Bell
Association for the Deaf and Hard of Hearing. It was a great experience, so I
decided to do a brief interview with a few of my fellow LOFTees about it. Be
sure to check out the AG Bell website at agbell.org and look into attending it
in the future!

Lesley: So first of all, can you guys give a brief intro of yourself?
First name, age, hearing device, etc?

Hailey: I am Hailey W. and I am 18 years old, and I have two Cochlear Implants (CI). I got
my first CI when I was 2 and my second one when I was 11. I was the first child
in RI to get a cochlear implant and one of the first children to get a CI at
Boston Children’s Hospital. I attend a mainstream private school called Lincoln
School in Providence, RI and I will be a senior this year. [Hailey also helped with the logo design for deafteens.org]

Marisa: My name Marisa R. and I’m 17 years old. I am a rising Senior in the International
Baccalaureate program at a mainstream high school in Philadelphia, PA.  I was born profoundly deaf and I have been
wearing hearing aids since I was a toddler.

Anna: My name is Anna-Marie, however I go by Anna, I am 17, bilateral hearing aids hoping to get
a CI soon on the right ear. I attend Alamo Heights High School, and will be a
senior.  First in my family to get hearing aids, then my younger sister was discovered that she is modernly
hearing impaired. But she doesn’t wear her hearing aids except for school. I
wear mine from the moment I wake up until before I go to sleep.

Lesley: How do you feel your hearing loss influenced you in school,
both socially and academically?

Marisa:
Academically, my hearing impairment does pose some barriers to my learning, as
I need extra time to process the information that my teacher is giving to the
class. I get my class information with the help of a Sign Language Interpreter
and CART (Communication Access Real-Time Translation) for note taking. However,
with collaboration with my teachers, I can get the accommodations I need for me
to do well in class. For example, in Spanish class, my teacher always
approached me to give me a DVD that we would cover in class to take home. This
allows me to get the most out of the material given and gives me an opportunity
to practice my Spanish skills without any time restrictions.

Anna: My hearing loss influences me in different ways such as when I’m trying to make friends I
often have to ask them to repeat more then once and at first they don’t
understand but then when I tell them that I wearing aids they at first don’t
believe me. Due to the fact my speech is actually better then the typical
hearing person due to intense speech therapy I had starting from when I was in kindergarten
until I was in third grade. I usually have to show them my hearing aids and
they seem okay first. but then they begin to realize just how much it affects
me when holding a conversation with me. So they began to run away, not
literally of course, but they tend avoid me and warn their friends that I’m  a “freak” and I’m not someone that
people should friend. Academically my hearing loss doesn’t affect me that much
unless I cannot see my teachers face. I tend to lip read more then listen to
the teachers because it’s actually quite difficult for me to hear in a typical
classroom setting. I work with my teachers before school, lunch time and after
school because that allows me some one on one time with my teachers.

 Hailey: My hearing lost influenced my life greatly! I my hearing lost has pushed me to
strive and do my best in school. I have always strived in this! I have
struggled socially because I did not have great self confidence and I have
trust issues. I have been hurt before and I never want to experience that
again. I have a few close friends that mean the world to me! But after my LOFT
experience that is going change!

Marisa: Socially, I have not had many problems during my time in high school, aside from not
being able to follow some conversations (that can be expected!). I feel that
students at my school are accepting and I get along with students in my grade
and with those older than me. I also have had social experiences with my peers outside of high school. This past year I was
involved with the Satell Teen Fellowship for Jewish teens and this summer I
attended LOFT. I felt that my social circle has been broadened as a result of
my involvement in both programs!

Lesley: Hailey, you have brought me to my next question! Before you
went, what did you know about/expect of the LOFT program? Were you excited to attend?
Nervous, or possibly dread going?

Hailey: I had no
idea what to expect when I attend the LOFT program. I was very nervous but my
dad gave me a piece of advice. He said to be myself and to let my peers see me
who I am. And I took that advice to my heart. But at the same time, I was very
excited to meet people with hearing lost and who are deaf. I have never met
anyone my age who was just like me and I thought that this will be an
interesting experience.

Marisa: When I first learned about LOFT, it was from my Mom. My Mom showed me the website and
told me that it would be a terrific opportunity to meet other deaf teens like
me. I was vaguely interested but I brushed it off, thinking that I was already
fine the way I was. My previous negative experiences with the deaf community
did not help matters! But I was accepted to LOFT and once I arrived, my
feelings began to change. I was inspired by the strong, intelligent individuals
I was surrounded by. Many times I found myself thinking “wow, hard to believe
they’re all deaf and hard of hearing!”

Anna: I didn’t know much about Loft when I went except that one of my close friends from
college (Armando H., he is hearing impaired), all I knew was that I was
going to be with deaf and hard of hearing people. I didn’t even want to go but
my parents encouraged me due to the fact I have anger issues caused by high
degree of insecurity and mega lack of confidence.  Once I was at the airport though, waiting to
be picked up I felt a little tug at my heart. It was a tug of excitement and
dread. One thing that scared me was imp not like one of those happy people and I
was afraid everyone else would be HAPPY HAPPY people. And those kind of people
scare me greatly. once I sat that table I quickly discovered something- and
that was I could not wait until I got to the hotel to meet everyone else.

Lesley: Great responses! How would you describe LOFT to a deaf teen who
has never heard of it before?

Marisa: I would
describe LOFT as a leadership and self-advocacy program geared towards oral
deaf and hard of hearing teens. LOFT is a 4 day retreat in which teens explore
their own leadership capabilities and learn more about how to self-advocate for
themselves and services that will benefit them greatly in high school, college and
adulthood.

Anna:  Its just not describle to me. It’s a great
adventure and it’s a great awakening to the “Deaf World”

 Hailey: LOFT is a program for deaf and hard of hearing teens who are in high school or going off
to college. It is a great opportunity to gain self confidence, leadership
skills and a great way of meeting other deaf individuals similar to your age.
Plus it is a great opportunity to gain friendships that will last for a
lifetime and that I am so grateful that I got to attend this program.

Lesley: Having attended LOFT with y’all, I can say that it was
certainly life-changing. Are there any especially memorable moments you’d like
to share from those four days when you think back?

Marisa: I think
my fondest memories from LOFT would be playing card games in our hotel suite
with practically everyone. I would say the general interaction with everyone
made for good memories!

Anna: When [a
group of LOFTees] and I all played Moment of truth and afterwards we spent most
off all night talking. Most of us were up until 5 am talking.

Hailey: I think
the most memorable moment for me was when I realized that I was a part of
something big. I know that I will never forget this experience and that I will
have friends for a lifetime! Plus I really enjoyed our emotional talk, where we
shared stories about our past and experiences. It made me so proud of everyone
for standing up and sharing something about them.

Anna: Even though I shared somthing about me, that I don’t normaly share, with the small group; thinking I would scare them off and not be friends.  But somehow it made them all closer to me.

Lesley: So many memories How has attending LOFT impacted your life?
What, if anything, have you gained from going?

Anna: I learned necessary skills to be a leader and a team member at the same time. I also learned
self advocacy which I knew was necessary to play catch up for my senior year,

Marisa: From attending LOFT, I can say that I’ve gained new self-confidence in being deaf. I
think that since I began high school, I’ve explored my multiple identities:
Latina, Jewish, and finally…Deaf. I have a greater comfort with being deaf
now that I completed LOFT and I think I will seize every chance possible to
educate others about my hearing impairment and be a big self-advocate for
myself!

Hailey: LOFT has definitely impacted my life. I will never never forget this experience! I made
such great friends and I know that we are going to be friends for a lifetime. I
learned more about myself, gained confidence, and more leadership skills! This
has been the best experience of my life! And I am forever grateful!

Lesley: I am so glad I had the opportunity to become friends with all
of y’all, it was great. For those teens reading who felt like some of you did
before attending LOFT- isolated or perhaps lonely, what advice would you give
them?

Marisa: I would tell them that if you ever feel lonely or isolated by others, talk to a trusted
adult! And if there’s no adult that you trust…then stand up to the ones who
make you feel unwanted! My advice is: don’t be afraid to speak your mind
whenever you are mistreated and always remember that your deafness is not the
problem.

Anna: Keep your head held high and get your story out their it may not be heard but hey you don’t
know what could happen unless you TRY. I cannot emphasize enough on that! You
gotta TRY TRY. There always will be 1 in a 1000 that will accept you and be
your true friend. I know that I will still feel isolated or lonely sometimes
but I have skype, facebook and texting to reach my newly found friends and I won’t
feel like that anymore. My advice is to put your story out there and hope for a
miracle because as I recently learned, Hoping for a miracle is not a fool’s
move it’s a wise person’s door to a better path.

Lesley: All great advice! Those are all the questions I have- do y’all
have anything else you’d like to say for those reading?

Marisa: For all
readers out there-read about LOFT! Check out AG Bell’s website, apply, and
hopefully you will have the experience of a lifetime! I would strongly
encourage any oral deaf teen to participate in this special program!

Anna: Oh, I would like the readers to know that I am going to try
to  publish a book about my experience being deaf and about LOFT.

Thank you,

deafteens.org

About Teens in Action: deafteens.org decided to connect deaf teens and hearing teens together. We hope that by doing “Teens in Action” will accomplish that. Each month a teen or a group of teens will be the “Teens in Action” for the month.  

David Cluff, Founder of deafteens.org, says “Thank you! Thank you! I could have never gotten to where I am today without your support. I have never put so much time, heart, mind into any other project such as deafteens.org. deafteens.org is an inspiring tool and a dream come true.  Again, thank you!”

Photo, David Cluff, taken during one of his troop’s scouting events.

A mother, of two deaf children, writes about real life experiences as a parent. www.babyears.blogspot.com

Another mother shares her son’s journey through blogging. Read about Ben’s journey. www.bensjourneytohear.blogspot.com

Liz’s Blog: www.l1zblog.wordpress.com 

TJ’s Blog: www.bionicearworld.org

Lesley, who helps with deafteens.org, writes about a journey through life, school, hearing loss and cochlear implants.  www.cacophonytosymphony.blogspot.com

David, founder of deafteens.org, shares his silent moments as a deaf teen.  www.silentmomentsmystory.blogspot.com

 You can also find these links on the home page of deafteens.org.

We hope you find these useful.

Thank you,

When I was eight yours old I lost my hearing gradually due to a genetic problem. I was fitted with hearing aid after my teacher felt that I did not respond as much as other children. My hearing got worse and worse over the summer so my parents looked into a biomedical device also known as a cochlear implant. In third grade my parents and I met a boy who received a cochlear implant and I decided to get one myself. Over the summer my parents and I learned some sign lauguge to communcate. I am the only one in the family who is deaf. However neither my parents or I  fully mastered ASL.  In November of 2000 I recieved a cochlear implant.

My name is Liz and I have been wearing hearing aids since Autumn 2002, after my appointment at Audiology shown I did have a hearing loss. My right ear being the worser ear, which still is today.

Cause of my deafness is unknown, so I’m a medical mystery. I have looked after my ears. (No loud music booming through headphones, for exmple.) So I know I’m not to blame.

Recently I own new hearing aids; Siemens Reflex DP, after my hearing got worse through infection of my mastoid. So I blame my recent hearing loss on that, as I have only lost my hearing since all this started, which is still an on-going battle. People have to make sure they have my attention now before speaking, otherwise I won’t hear.

I’ve been blogging since October 2008, which I started originally to air off my frustrations, as it was around then and after that my deafness really sunk in and hit me. Up till then I got on with it. I learnt through others that I was grieving for my hearing loss, and although I was grieving for it later, I was reassured it was ok to feel like that. I realised by blogging, that I hoped my blog would help the next hoh/deaf person, who may be feeling low or something, and hopefully by coming across my blog, they would not feel alone in their feelings. And that hearing people who stopped by at my deaf blog would be more deaf aware. I also recently discovered that my blog is useful for university students too.

Equipment I use are; Shake ‘n’ Wake vibrating clock, Nokia Loopset for my mobile phone. But I’m mostly a texter then a caller now as I have a lot of bad days hearing what’s said, so I may look at an alternative.

I had a Social Worker who assesssed and recommended equipment to me. I had a fire alarm fitted free by a fireman, which was arranged by her. The device is portable that alerts me by flashing, in the unlikely event of a fire. It goes on a charger at night, and you have a vibrating pad that goes under your pillow. I used to have a door push button that worked with this too, but over time people were pressing it and it wasn’t working properly, even though the battery was new. So I bought my own doorbell from Argos, this unit is also portable and flashes. I don’t miss a caller now.
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Check out her blog! http://l1zblog.wordpress.com | Thank you, deafteens.org

I was diagnosed with hearing loss determined to be profound at the age of one and doctors described it as to be caused by Gentamicin which was a IV medicine when I was an infant to treat RSV. I had 34 chest tubes and numerous surgeries to normalize my lungs because it keeps collasping. With this strong medication, these episodes stopped but it gave me a negative effect on my hearing which it made me to go profoundly deaf the next day. Since, that the 1980s which the doctors misdiagnoses deafness with another disorder or condition, it is required that all newborns have a hearing test done shortly after they are born because deafness is caused by genetics, birth accidents etc.

In 1987, at the age of one, I was fitted with hearing aids at the time and started early childhood education, preschool at the deaf education program in my neighborhood school. As my parents wanted to get hearing aids instead of cochlear implants, they felt it was the best to get hearing aids because they also felt that CIs is too early of a technology to determine if they would work for me. I had to go through intensive private speech therapy in my childhood. My teachers, therapists, and family, and friends were very pleased to know that I have started to talk more naturally and easily by the age of 5.

As with vocabulary growth, my preschool teacher for the deaf ed program noticed that I love to read books. It was so early that I even too learned how to use a dictionary in case if I found a new word. My speech was very natural sounding that many people around me can understand me very well and I learned how to lip-read very quickly.

In 2005, I graduated from high school and attended a local community college. I got a new set of hearing aids from Phonak and they worked great until it was very difficult for me to understand speech in certain situations that in July, 14 of 2010, I was implanted with the Cochlear Nucleus 5 in my left ear. It was decided to get one as recommended by Dr. Robert Peters my ENT surgeon which I was referred to by my family doctor because I had tinnitus which occured in 2007 and it worsened by the time the weeks before having cochlear surgery. Right now, 2 weeks after the surgery date, the tinnitus has reduced to almost half that it improved my sleep. The audiologist who works with CI patients said that it will probably disappear a few months later after my activation on August 9th.

I work at Phi Health as a Medical Research Analyst and right now I’m on the Pediatric Development team for the MRI machines. I love my job and I can hear now and always forever!!