Sunday, October 31, 2010

Hearing Loss Profile: Danielle

This months profile is a blogger, advocate and resource for parents of kids with hearing loss.

Danielle's Story

My name is Danielle.  Since birth I have had a Bilateral Sensorineural Hearing Loss (Nerve Deafness). I am the only person in my family with a hearing loss. My parents didn't really know what to do for me when I was younger. My mother especially didn't know the services that were offered at the time. 

I struggled my entire life in Special Ed. I was in a regular public school and  BOCES (Board of Cooperative Educational Services) for hearing and speech services since age 2. Everyday I had speech therapy.  It wasn't just one hour, it was hours of speech therapy.

I don't recall learning that much in math and science. I wasn't able to hear that well with my hearing aids. My parents have bought me numerous pairs of hearing aids that didn't help me at all. I know how to lip read very well. That is how I get by. When I reached high school I was struggling tremendously. I still had speech therapy where BOCES would come in my high school and pull me out of class just to lip read.

I was in a really bad setting. I never really got to learn. 

Now I look back and realize this was the worst experience of my life. 

I had an FM system on my desk. I remember this one kid used to push it off my desk and my teacher didn't do a thing. The FM System helped me hear a little bit. I would go for days without the FM system because this kid knocked it off. It would break and had to be repaired.

I understand my parents didn't know what to do for me, but I would have done so much better in a deaf school. 

My last year of High School I was thrilled to get out of there. I wanted to start driving, but I had a really big fear because of my severe hearing loss. I didn't know anyone who was like me. I was all alone.

Usually when I came home from school, I would do some homework and study for tests. I would fail because I never knew what was going on. I didn't have a note taker like I was supposed to. I was very isolated, never really had any friends. I never trusted anyone but my family. 

Months later after graduation, I realized I wanted to become a teacher in special ed. I had this one teacher that I loved in my speech class and she was great at teaching me.  She inspired me to go into the field. One year later, I applied at a college near me. I had to take a Entrance Test and I asked for services: extra time for the test, FM System, etc. I was used to having multiple choice questions just with 3 answers, so I remember taking this test.

It took me 8 hours. 

I failed it. I didn't know the science and math. I had to be placed in non-credit courses to learn before I got into regular college-level classes. It was awful. I felt dumb and stupid.

One year later, I learned math, science and English for the first time in my life. It was a whole new world for me. I passed those classes with flying colors. I stayed at the college campus for hours and hours after class was finished just to get a tutor to help me. I FINALLY DID IT!

I started college-level classes in 2006. That's when my life changed forever. In class I saw someone using their hands and I had no idea what it was. It was an interpreter using American Sign Language. I was shocked, I had never seen anything like this before. I asked my deaf/hard of hearing counselor what that was and she said " ASL". She then told me, "You know that you're not the only hard of hearing person out there."

I said, "Really? Please sign me up for this class next semester."

My life changed forever. I knew I had a problem my entire life, but I wasn't sure what was wrong with me until my mom explained it during my last year of High School. I was so confused most of the time so I finally had the guts to say, "Whats wrong with me?" That is when I realized I had a hearing problem.

In 2007/2008 I took ASL classes. I met two people that were deaf. I was so happy to be surrounded by people like me. It was like heaven. I was so happy to go to college just to talk to these two girls because they were just like me and we understood each other.

In 2008, I mastered all the levels of ASL. I became the ASL president for 2 years. My ASL group went to Gallaudet University for the deaf  a few times. It was the best experience of my life. I changed my degree to major into ASL.

Then I got very ill and couldn't finished college. My hearing worsened from severe-profound to profound deafness. I cannot benefit from a hearing aid in my right ear. I can benefit a little with my left. I am in the process of getting a Cochlear Implant.

This is my personal story, not every story is like mine. I basically had to advocate for myself my entire life. Now that I'm 25-years-old and cannot go to school at this time, I continue to be an advocate. I am involved with the Hearing Loss Association of America as the newsletter editor for my local chapter.

For all parents out there: it can be hard to deal with children who have a hearing loss. My parents were lost and confused for years. They didn't know what to do for me. Early Invention these days is wonderful. It has been around since 1985, but my parents had no idea. No one told them. There is so much accessibility these day for kids it's amazing!

In college, I had an Interpreter after I completed my first ASL class. I also had a CART captionist (a person who uses a laptop and types everything the professor and students say).  It can be printed out if you ask and you take that home to study. CART is amazing. It saved my life when I didn't know much signing.

I was just two classes shy of graduating college with my ASL degree before I became ill. I continue to be strong and advocate for all parents that are confused about their child's hearing loss.  Each state is different but there is help out there. If you have any trouble finding help or where to go please email me at deafinitelyasl11@ymail.com or visit my blog at: http://growinguphardofhearing.blogspot.com/.  I have a list of resources on my blog as well.



Thanks Danielle!  Hopefully your story of self-advocacy will inspire other individuals and parents to keep demanding what they need.

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.

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