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.

Sunday, October 24, 2010

The big kid "magic ears" play group

One thing I learned by travelling all the way to Orlando this summer is that life is really good here in Pittsburgh.

Julia has a top notch pediatric audiologist, a rock star ENT, and a little community of friends with hearing loss.  People travel every other year to AG Bell's convention so their kids can finally see other children with hearing aids. The longest drive for us is about 30 minutes.

Some of our good fortune might have ended in August.  Julia's hearing loss playgroup was over at the start of kindergarten.  Her friends were about to be scattered all over northern Allegheny County.

Since we all got to know each other dropping off and picking up our kids at school, we decided to keep getting together.   We formed a big kid "magic ears" playgroup.  Every other month we'll get together at a playground or area attraction for a couple of hours.  So far the kids had a nice romp at North Park.

Julia won't have to wait for AG Bell's 2012 Convention in Arizona to talk to another kid that knows all about hearing loss.  She'll see friends next month. With a little time put into organizing these events, Pittsburgh continues to give us everything we need.


This playgroup is for kids age 4-second grade with any level of hearing loss.  If you live in the Pittsburgh area and your child is interested in joining our playgroup, send an email to bigteethclouds at gmail dot com.

Sunday, October 17, 2010

The hearing loss excuse

Julia may be the pokiest child on the planet.  Unless she's about to do something she's really excited about, the act of putting on two socks can take forty minutes.  I stay close by reminding her, "put your socks on.... put your socks on."

I ask nicely two times.  The third time I use stern mommy voice.  Julia does not like stern mommy voice.  It's just a tiny bit nicer than my angry mom yell.

Stern instructions often lead to the whining, "I didn't hear you" response.

Millions of kids say this to their parents every second.  They say it with every toy that can't find it's way back on the shelf and every shoe that resists being put on a little foot.  It's just an excuse.

It's a sticky issue in this house though.  Maybe Julia doesn't hear me sometimes.  I'm almost sure it's because she's singing/arguing/thinking about spaghetti.  She doesn't pay attention, so missing instructions is a product of her distraction, not her hearing loss.  This is my theory, but I can't know for sure.  I doubt myself and feel guilty for getting tough.

The guilt isn't enough to stop me from cranking up the volume for that third plea to put on clothes or whatever crazy mom thing I want her to do.  It occurs to me that we're quite normal, me and Jules.  I resist the urge to blame her hearing loss.  I am a normal mom.  I try to be a good, although cranky, model.

Perhaps with enough practice, she'll understand that "not hearing" and ignoring your mother are different things.  She won't make an excuse based on her hearing aids.  That's the best I can hope for because I'm sure just listening to your mom is never an option.

Sunday, October 10, 2010

Hearing loss cause: unknown

Julia was a healthy full term baby born exactly one week before her due date.  She was healthy and perfect.  She passed her newborn hearing screening.

The hospital bassinet had a cabinet underneath where the diapers were stored.  If I wasn't very careful with the doors they would slam loudly.  Julia would startle and cry.

At least she can hear, I thought.

I thought about her hearing a lot even before she was born.  I used to read to my belly and play music for the baby brain developing within.

I thought that my singing calmed her as an infant.

Then just before she turned three we found out she couldn't hear, not normally anyway.  I was devastated.  I wanted someone to tell me if she ever heard me.  Has she ever heard me sing to her?  Has she heard me whisper 'I love you'?

The tests were inconclusive as they often are.  The ENT assumes the loss is genetic, but the markers haven't been discovered yet.  No one knows if the loss is progressive.  No one knows if she could hear when she was a baby.

All of it bothers me.  I'm no fan of the unknown.  Especially the bit about her hearing potentially getting worse, I'd like to know about that.

As time goes on I keep trying to make sense out of those early years.  It would mean something to me if she could someday tell me that she heard me as a little toddler.  Since that's doubtful I should probably keep assuming she did.  It makes me happy to think she didn't spend almost three years hearing a jumbled mess.