Thursday, July 14, 2011

My Story featured on Cochlear Implant Online!

I was asked by Rachel to write a story about myself for her website. For some reason I cant post the link. Thank you so much Rachel for asking me.

Danielle was born with a moderate-to-severe hearing loss. She was fitted with hearing aids at a young age. She shares the struggles of growing up with hearing loss. However, there is a happy ending to the 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, Because no one told them about services that were offered at the time.

I struggled my entire life in Special Education. I was in a regular public school and BOCES (Board of Cooperative Educational Services) for hearing and speech services since age two. Everyday I had speech therapy. It wasn’t just one hour. It was hours of speech therapy. At the time, I thought this was required. I didn’t know I had a hearing loss until I realized I was different at age 17 years old. That’s when I realized something was wrong with me. I thought it was normal. All my life, I have been very isolated and stayed to myself because ” I am different.”

I don’t recall learning that much. I wasn’t able to hear that well with my hearing aids and my FM SYSTEM. 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 know how to lip read so well that if you are a table away and you have your mouth covered I can even read the side of your mouth. It's amazing. That’s how well I was taught. The only best thing that ever happened to me is speech therapy.

I was in a really bad setting in high school. I never really got to learn. All I remember was being pulled out for speech and a TV always on in the classroom. 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. After 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 because I was always made fun of. Months later after graduation, I realized I wanted to become a teacher. Even though I struggled in school, I had this one teacher that I loved in speech class. She always told me I would make a great " teacher" someday. I believed her.

She inspired me to go into the field. One year later, I applied at a college near me. I had to take an 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. 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, and I was so upset with myself. I cried for a month. I was so mad at myself and thought I was a failure.

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.”

I knew I had a problem my entire life, but I wasn’t sure what was wrong with me until my mom explained it to me. I remember asking her “Whats wrong with me?” That is when I realized I wasnt just like everyone else. I was different.

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 3 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.

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

Five years ago, I got very ill and couldn’t finished college. I was so upset because I was only four classes away from graduating. Then 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.

In 2008, I was at the 1st NYC Walk4hearing. I raised over $3,000. I had the pleasure meeting so many new people there. I was introduced to this one woman and her name was Jen. She was wearing two devices on her ears that was attached to her ” head”. I asked her what they were and she told me they were cochlear implants. “They help her hear,” she said. She then told me she was profoundly deaf during her entire life and never heard one sound before up until she received her implants five years ago. For one year, I researched about Cochlear Implant’s after I lost most of my hearing in my right ear. Then I knew that this was best for me. I wanted to be able to hear my niece.

In Feburary 2011 I had surgery for a cochlear implant. I was so scared because of my illness, but I needed to HEAR. I needed to just fit in. On March 8th, 2011 was the best day of my life and was able to hear within 10 db. I was activated. I heard water, a pen drop for the first time and so many more sounds. I couldn’t believe all the sounds I have been missing out on my entire life. My favorite sound is the ocean its so relaxing. I didn’t know the ocean had a sound until I went to the beach with my cochlear implant. Everything makes a sound. I love the option how I can be in both worlds. deaf when I can’t take anymore sound for they day and then when I want to hear I can just put it right back on my ear. Having both worlds is a great experience. I am so grateful I have this implant. A month after I was activated, so many people came to me and said ” You have the biggest smile on your face.” ” You are seem so relaxed”. It’s true I have been so relaxed with this implant because I don’t have to look at you and read your lips. I can hear mostly everything your saying. If it weren’t for Jen, I wouldn’t have my cochlear implant today. I didn’t know Cochlear Implants even existed. Jen changed my life and I am so happy to have her as a friend.

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 will be going back to school in September to finish my degree. I also will continue to be an advocate. I am involved with the Hearing Loss Association of America. If you recieve the Hearing Loss magazine I will be in the September 2011 issue.

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. My mom was basically in DENIAL. She was afraid that people would label 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! Here on my blog on the right hand side is a list of resources. If you cant find anything and need help finding support in your state. Please dont hesitate to email me. I am always here to help.

To all my Readers out there: I hope you enjoyed my story. Most of all to all you children and adults: Follow your dreams and dont let anything stop you!!!

As Marlee Matlin Saids: "deaf people can do anything EXCEPT HEAR." It's true we can do ANYTHING.



carmella said...

Wow your story us so daughter is 3 she just receive a CI june 28 and im just so excited for her she uses ASL to communicate and we will continue to even when shes speaking but then is nothing like her being able to hear and verbally communicating im just so glad i saw your blog its a blessing and i can't wait for her to get activated"!!!!!

Danielle said...

thank so much Carmella. I am glad your daughter just recieve the CI. Best of luck to you both. If you need any help or support feel free to email me anytime at:

the best thing to do is start a blog about her and her activation or even if not keep a journal

best wishes.


Anonymous said...

Thanks so much for your sharing your story as it is one that I can relate to.

Danielle said...

Anonymous- Thank you for reading!