Sunday, September 26, 2010

Living with hearing loss: Lesley

Some of the blogs I most enjoy are written by deaf and hard of hearing people.  They give me a tiny window into what it might be like to have a hearing loss.  One of the blogs I like to visit is Cacophony to Symphony.  Lesley writes eloquently about her experiences.  She's in high school, living that future that I spend a good deal of time worrying about.

Lesley's Story

My name is Lesley, but I also go by the blogger name "PinkLAM" and I'm going to be a sophomore in high school this upcoming school year. I have a blog at cacophonytosymphony.blogspot.com.

I was diagnosed with moderately severe hearing loss when I was three and a half years old (this was my first hearing test, so there's no way of knowing when I began losing my hearing, or if I was just born with hearing loss).  I wore hearing aids and learned to do very well with my residual hearing through Auditory-Verbal Therapy.

When I reached my preteen years, my hearing loss progressed to severe-profound, and I chose to get my first cochlear implant, which was an amazing experience for me. I received my second implant less than two years later. I also use an FM system in the classroom (when it's functioning) and a captioning decoder for videos (when someone in the school is able to figure out how to get it to work), but my high school has made it difficult for me to get what I feel to be the proper tools without going to another school with more resources.

The greatest thing I've learned from my parents, especially my mom, is that I am capable of doing anything I set my mind to, as long as I advocate for any extra needs I may have with my hearing along the way. My mom taught me how to get the accommodations I need, and gave me the tremendous gift of being confident in my abilities and undeterred by my hearing loss. This applies to everything I've done- from taking up the violin, to learning French, to running for officer positions of clubs, my mom has always been cheering me along the way.

I believe that this is the best thing the parents of a child with hearing loss (or any other special needs) can do- encourage their kids to branch out, rather than hoping they don't go for it in fear of the activity being too hard to hear or communicate.



Thanks Lesley!  It's my goal to teach Julia she can do whatever she sets her mind to, you and your mom are an inspiration!

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, September 19, 2010

A test of the emergency response system

On Monday, I got a call from the school.  The name of Julia's school scrolls ominously across the caller ID.

In 2.5 seconds I can think of seven awful things that could be the cause of this call.  It could be vomiting, fever, head lice, or bad behavior (that's really unlikely).  Maybe the bus wrecked.  Julia is lost.  Julia's hearing aids are lost. 

Her teacher just called to tell me that Julia didn't have her FM boots.

I'm relieved for just a moment before I feel dumb.  Julia likes to take her FM boots off over the weekend.  She doesn't like her magic ears being "long" when they don't have to be.  I've successfully taken them off for two weekends and remembered to put them back on by Sunday night.

This week, not so much.

So I got to test my emergency response time.  I took the call at 9:00 am.  I was clicking the FM boots on at 9:12 am.

My memory might not be great, but I'm happy with my time.  Now I just need to work on my level of anxiety when the phone rings.

Sunday, September 12, 2010

Kindergarten accommodations

Julia has finished her first two weeks of kindergarten.  She loves it!  So far everything has been going smoothly.

Julia wears two Phonak eXtra 311 behind-the-ear hearing aids.  The school has purchased a Phonak Inspiro FM system for her use during the school day.  I was impressed with the system, compared to the Phonak EasyLink we have at home.  The Inspiro has a nifty test for the teacher to make sure the microphone is in the correct position.  It requires the teacher to read a sentence and shows a smiley face on the display if it is correctly positioned.  We've had trouble with microphone placement during the preschool years.  Hopefully we won't have any issues now.

Each morning when Julia gets into her class, she takes her hearing aids out and puts the FM receivers on by herself.  The boots go back and forth between school and home, but the receivers have to stay at the school.  I was a bit worried about this part.  Thankfully, Julia has really mastered taking her aids out and putting them in.  I'm still making sure her hair is pulled back to keep things as simple as possible.

Three times a week Julia is pulled out of the classroom to work for 30 minutes with her hearing support teacher.  They are working on self-advocacy goals, lip reading, and caring for the hearing aids.  The hearing support teacher will also help the classroom teacher to implement the classroom strategies in the IEP.

Starting kindergarten has been a great experience.  We got to meet Julia's teacher and see her classroom for the first time at the beginning of summer.  Knowing the teachers ahead of time helped us when we were preparing for the big first day of school.  Here's hoping the rest of the year goes just as well as the beginning!

Sunday, September 5, 2010

Cuing until I can't spell straight

Tim and I have completed six weeks of cued speech instruction.  The first couple of classes made my brain hurt.  I can't remember the last time I learned something new.  As time went on, and we practiced, it got easier.

Now we can cue anything.

Cued speech is pretty neat once you've got the hang of it.  It is impacting my daily life in unexpected ways.  I can't spell right anymore.  In fact, at least once in each sentence, I spell something phonetically.  You cue sounds and not letters, so my brain has apparently switched over. 

I'm also really cognizant of the way I talk.  Cuing requires you to cue the sounds exactly as you say them.  Your hand shapes have to match your mouth.  I can hear myself every time I say "yer" instead of "your".  It's like that "er" is extra loud.  It's making me feel like a hillbilly.

We're working to gain speed and proficiency by cuing Shel Silverstein poems to each other.   That was my idea.  "If you're a dreamer, come on in..."  I can cue that, but of course I say "yer"!

The next trick will be to teach Julia to understand our cues.  Then she'll be able to understand us when she has her hearing aids out.  I won't have to yell anymore.  We tried to cue while we played Yahtzee with her.  She was not amused.  Mommy and Daddy still have to talk way too slow when we're cuing.

This is the great accomplishment of our summer.  I'm really proud of us and hopefully by next summer we'll be cuing away at the beaches and swimming pools.  If you're in the Pittsburgh area and would like to learn cued speech, send me an email (bigteethclouds at gmail dot com).  I can connect you with our instructor.  She is terrific!

More information is available through the National Cued Speech AssociationCue Camps and instructors are available to help you learn.  Click "find an instructor" under the "resources" tab.