Sunday, December 26, 2010

Hearing Loss Profile: Liz

Today we get to meet a late-deafened adult, Elizabeth.  She lives in England and blogs at Liz's Deaf Blog.

Liz's Story

I first realised something was wrong for definite with my hearing sometime late in the Summer of 2002. It was after the 4th time of asking someone to repeat what they just said and still not getting it. Before that I felt something wrong but wasn't quite sure and got by fine. My mum noticed something was wrong before me, but she did not say anything until we were at Audiology in Autumn 2002 for tests. I have been wearing behind the ear hearing aids ever since.

The cause of my deafness is unknown, so I am a medical mystery. My right ear is more deaf than the left. I'm  mild to moderate in low frequencies and profound in high.

I wear Siemens Reflex DP now. I got them shortly after my hearing got worse, which I blame on my mastoid infection, as that's when it since deterioriated. 

My advice for parents of a young children with hearing loss is to seek advice from the right people.  Never be scared to ask questions. Get equipment that your child needs as they grow to lead as independent a life as possible. When speaking to them, always make sure you first have their attention before you start speaking. This will save confusion, and keep them from feeling left out. It can be a frustrating time for them, especially if deafness came later.

Equipment I use at the moment that helps me:

Nokia Wireless Loopset for my mobile phone, my blog tells you more about that, and also at Connevans. This helps with conversations by using the loop part of my hearing aid, although with me having some bad days now trying to listen on the phone, I may have to consider some alternative, like RNID Talk by Text Home Edition.

Shake 'n' Wake vibrating alarm clock which gets me up in the mornings without fail.

A portable flashing doorbell unit, so I never miss who is at my door.

Silent Alert, which alerts me if the fire alarm went off. This was provided by my local fire station for free, after it was organised by my Social Worker.


Thanks Liz!  Now that Julia is growing up, we've been thinking about things like alarm clocks and cell phone accommodations.  It's great to learn about what other people are using.

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, December 19, 2010

The new language experience

Three years ago, I was all about language experiences. Every moment of the day had to be filled with conversation. I was creating a language-rich environment. I was teaching my little girl to talk.

I used to read Goodnight Moon just like the speech therapist. I pointed to the fire and said, "hot." After a while Julia would say "hot" so I'd say, "hot fire."

These small accomplishments were a big deal.

When she starting putting words together on her own I would carefully count them. "Gaston shoot the bear," she liked to say. I was sure to tick off each word on my fingers. Four words! She's combining four words.

Julia was catching up to her typically hearing peers.

Now there is no more speech therapy and no need for contrived language experiences. I still remind her to "say all of her sounds" and model the late developing /th/ sound. It's easier for both of us after years of practice.

I've finally calmed down.

We drove through the Hartwood Acres Celebration of Lights last week. As our car crept through the displays, I thought about all the words we were using. A few years ago this would have been looked at as a great chance to expand her vocabulary, but I would have worried that she couldn't hear me well enough in the car. I would never have turned the radio to the accompanying Christmas music because it is too much background noise. I would have been uptight and less able to enjoy making memories with the family.


This drive made me realize that I'm in a good place. I rode around with my little girl and my husband, each of us pointing out all kinds of brightly colored shapes. I just enjoyed the ride.

Julia probably learned something, but I didn't document the instant of that growth. One mission, her speech, has been accomplished. Now there's just all the rest of growing up to think about.

Sunday, December 12, 2010

Fly on the wall with feelings

During my two weeks of sickness, I assembled enough energy to volunteer for a day at Julia's school. I loaded my pockets with tissues and cough drops. Soon I found myself lost in a chorus of coughing and sniffling. I didn't need to worry about standing out in the crowd.

It was Thanksgiving Eve and the kindergarten wing was filled with parent helpers. The rare full day volunteer opportunity found us making tee-pees out of tortillas and apple turkeys. Kindergarten teachers are like craft ninjas, they fashioned a turkey call out of a plastic cup, some string and a sponge.


I helped and watched my daughter navigate a school day.

She stood with her class to recite the Pledge of Allegiance and was called aside to put on her FM receivers. I cringed and felt a tinge of sadness. She went to the far side of the classroom and pulled her squealing hearing aids out. In a moment she had one receiver lined up. The kindergarten teacher helped her snap it in place. By the end of the Pledge, the FM was up and running.

After each activity, the kids went to a different room for another teacher's activity. Julia transported the FM transmitter. She clipped it to her own waistband and attached the microphone to her collar. She looked like a little mini-teacher.

Each of the kindergarten teachers knew all about the FM system. They positioned it appropriately and tested to make sure it was working. In a flurry of instructions these teachers would say, "Julia". Jules would jump or suddenly turn around. It was comical in a slightly painful way.

By the end of the day, I managed to replace my sadness with pride. Here is a little girl that fully understands the accommodations offered to give her full access to sound. She handles her hearing aids and the FM system with confidence. She takes this all as just a part of her day. She doesn't envy the other kids. She even enjoys having that little microphone. She'll sing herself a song into it when she has a chance.

She's an inspiration. Though I'm sure it won't always be so easy for her, she's got this kindergarten thing locked down. It helps that the staff at her school is pretty extraordinary too.

Sunday, November 28, 2010

Hearing Loss Profile: Lucy

This month's profile is of a young lady that lost her hearing when she was four-years-old due to unknown causes.  Lucy's blog, Life Inside These Hearing Aids, is one of my favorites!

Lucy's Story:

My audiologist – who has stuck around these last 24 years – still does not know exactly what happened. All we know is that all those little hair cells in your ear that are supposed to wave and dance and send sound to where it needs to be – mine are dead. Without my hearing aids – Phonak Nadia V digital aids – I can’t hear anything. But with my hearing aids, I can listen to music. I can tell the TV is on in the other room even though I can’t make out anything intelligible. I can carry on conversations and voice for myself.

Even though I’m an adult now, I’d still have to defer to my mom to tell you the range of my hearing loss. When you’re a kid, none of that stuff really matters – or makes much sense. My parents could tell you more about the technicalities. Just how much hearing I lost. How many ENTs and audiologists they visited before they found one across the street. The ridiculous things they heard (like I would never get past the third grade. Puh-leez. I have a college degree now). The decisions they agonized over. I was four. I had no idea what was happening. I just kind of went with it. I am pretty sure my biggest concern was whether or not I would still be able to watch Sesame Street. I had my priorities.

Since I was so young when I lost my hearing, my parents had to make a decision – cochlear implant or hearing aids? They chose hearing aids because they wanted me to make my own choice about whether to be implanted or not. I’m happy with my aids right now, but I know that a cochlear implant is a real possibility if or when I lose the rest of my hearing. I don’t know exactly how progressive my hearing loss is, but I had an audiogram a couple of years ago that indicated I had lost 10 percent of my hearing in the last 10 years. So, I’m savoring and appreciating what I have for as long as I have it.

I grew up on speech therapy, mainstreamed classes and interpreters. I attended an elementary school that had a Deaf Education department. There were some kids who were completely deaf that just took classes with the Deaf Education teachers. There were others, like me, who attended a session or two but spent the rest of our time mainstreamed in the regular classrooms with an interpreter. I don’t know what they do in schools now, but back in the day, we had FM systems. The teacher would have a microphone and I would have a special loop that I wore that would allow me to hear only her voice and not be overwhelmed by classroom chatter. Which would have been fine except the loop plugged into a small box that I had to wear. And in the late 80s/early90s, that meant wearing the box strapped to my chest. Embarrassing! Awkward! By the time I reached the upper grades, though, technology improved to where I could wear the box set clipped to my hip, string the wires under my shirt and attach them to my hearing aids or wear the loop around my neck.

I started homeschooling when I was in the 6th grade and honestly, the best thing about it was getting away from those ridiculous FM systems! Although my parents knew some sign language and my brothers could fingerspell, we weren’t really a signing family. I preferred to talk and demanded they not sign to me. I’m not quite sure where that animosity towards signing came from but to this day, I’d rather save my talking hands for other deaf or hard of hearing people. I don’t like to sign with hearing people unless they are interpreters.
When I got to college, I used interpreters in the classroom and asked that they interpret in CASE – Conceptually Accurate Signed English, which was basically ASL vocabulary with English grammar. Normally, I would have just notified the professor of my hearing loss, asked that he/she speak clearly and made sure I had a seat in the front row. But there was no way I would have been able to keep up with classroom discussion without an interpreter. I had a couple of classes where I used TypeWell – I wasn’t crazy about it because it fell too far behind and tended to summarize rather than provide word-for-word captioning. If I had known that CART was an option back then, I would have definitely asked for it. It’s much faster and more word-for-word.

I’ve never really understood why people say they have no regrets. I have lots of regrets about the way I handled my hearing loss. I tried to pretend it didn’t exist. I remember a pretty angry adolescence because I was frustrated with being left out but too proud to ask for help. I wish I had been more willing to acknowledge that my hearing loss affected me more than I wanted it to and been quicker to work with it instead of against it. I am thankful, however, to be learning from my mistakes, to be (more) willing to ask for help and reach out by networking with HLAA (Hearing Loss Association of America). Even writing my blog has been a step out of my comfort zone, but a good one. It’s a place for me to vent, work through hearing loss issues and meet other people who get it.

I wish I had been willing to meet hard of hearing adults when I was a child. My parents raised me well and taught me how to be an adult and prepared me to live independently and make good choices, but they couldn’t show me how to be a grown up with hearing loss. I needed to see adults with hearing aids live their lives. How do they ask for help? How do they get jobs? How do they function in society? I assumed that there was a lot I couldn’t do because I didn’t have those role models to show me that, in fact, there’s a lot I can do. So if I could do it all over again, I would have gotten involved with a hearing loss organization earlier on or sought out an older hard of hearing adult.

What I don’t regret is how my parents handled my hearing loss. They decided it would be best for me to make my own decision about a cochlear implant. They (mostly) respected my decision to speak and not sign. They recognized, probably even before I was mature enough to understand, that sometimes the best thing they could do for me was to let me have my alone time. It is exhausting – physically, mentally and emotionally tiring – to keep up with the world. To wonder what this noise or that was. To ask “what?” over and again. To guess, guess, guess what someone said. To fake understanding. So sometimes the best thing, contrary to popular child-rearing doctrine today, for me was an hour or two in front of the TV, with captions, to unwind and not have to concentrate so hard to understand. Time to read on my own. Let me and my imagination loose in the backyard.

I asked my mom, if she had to do it all over again, what would she do differently. She couldn’t come up with anything. “We just did what worked best for us,” she said. So don’t be afraid to do what is best for your child. There will be a lot of opinions and articles and thoughts and theories to wade through. Do what’s best for your child, for your family. And don’t feel guilty about it – or let anyone else make you feel that way. “Those people” are not the ones with your child’s hearing loss. This is your story and it will be different from theirs. Write it well.


Thanks Lucy!  I love your mom's advice.  I'm trying hard to follow it.

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, November 21, 2010

Staying in the elementary school loop

Julia quickly tires of my after-school questions. I have to wait for things to come out. It requires patience and restraint on my part.

In the first weeks I wanted her to report on the faculty's use of her FM system. Are they using it? Does it help her?

Julia was patient with me, but didn't reveal many details on the subject. I was almost relieved the morning I left the FM boots off of her hearing aids. At least the teacher noticed. That means she uses it!

Since consciously sabotaging equipment isn't a great plan, I've found a better way to stay in the loop during these elementary school years.

I spy.

I went deep under cover during my first spy mission as a parent-teacher group volunteer. I had to pack some boxes to clean up after the book fair, but the information I gathered in the school lobby was quite valuable.

A guy from our church was in the school to talk to the kids about trees. They took a walk around the playground to collect leaves. I took the opportunity to say "hello."

"I had Julia in my group yesterday," he told me. "They put the microphone on me and everything."

This is good. I spied and they passed!

I feel confident the school has adopted the assistive technology as a part of the daily routine. I'm happy. It's nice knowing what's going on, even if I have to occasionally do a little heavy lifting.

Sunday, November 7, 2010

Still surprised by (not) hearing

Julia was in the bathtub, hearing aids out, one afternoon. Someone rang the door bell. The dog went into watchdog barking-machine mode.

"What's Leia woofing at?" Julia asked.

Leia was downstairs woofing at a little neighbor girl that had come by to see if Julia could come out and play. It should have been one of those rare moments when it's actually nice having a child with hearing loss. Instead she heard the barking dog, knew someone was at the door, and embarked on an involved conversation about how she should be permitted to get right out of the tub to go talk to her friend.

These observations of my daughter's moderate-to-severe hearing loss have made me think hearing is our strangest sense. There is no telling what she will respond to with or without her hearing aids. There are so many variables.

Occasionally she detects a sound way outside of what I expect her to hear.  

Then with the hearing aids, at the crowded end of season soccer party, she doesn't flinch when I call her name.

There are no absolutes. After two and a half years, that is still surprising. I expect defined limits, like the old days of my blurry near sighted eyes.  Before my LASIK I knew how it would be every time I took off my glasses. The world was equally murky every time I looked at it.

The world of sound is different. I wonder if I'll ever get it, or if I'm always going to be surprised. 

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.  

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.

Sunday, August 29, 2010

Parent Profile: Rebecca

It's the end of August already and finally time for the first BTaC featured parent.  I first started corresponding with Rebecca when her daughter, K, was newly diagnosed.  She has agreed to be my first feature!  Rebecca has two daughters, K who just turned six and L who just turned four.  L is a typically hearing child.

Rebecca's Story

K's hearing loss was discovered at her five-year-old hearing screening almost one year ago. However, we had been through earlier hearing loss scares. She was born prematurely at 35 weeks via emergency c-section because of complications discovered late in my pregnancy. She was in the NICU for a week and failed her newborn hearing screening. She failed a second hearing screening a couple of weeks later, but she passed an auditory brainstem response test when she was two-months-old.

Then she failed an otoacoustic emissions test at nine months at which time we discovered she had a conductive loss due to fluid. She had tubes placed at 14 months, and then passed another ABR and a behavioral test when she was 15 months old. Her language exploded after the tubes were placed, and I really didn't worry about her hearing anymore.

She passed her four-year-old hearing screening also. So it was a shock (and a huge kick in the gut) to learn of her hearing loss at the age of five. Her ENT and her audiologist don't know if the loss was just missed when she was a baby/toddler, or if it has developed over time. Thus far, no cause has been found for her hearing loss. Fortunately, it seems to have stayed stable and in the mild range for the last year.

K wears two Phonak Micro Nios III hearing aids with an open-fit ear dome. She got her first aid in January and her second aid in June. We held off on getting her second aid because her left ear tested normally twice within the last year on the tones, however, our current audiologist thinks that was just bad testing. She loves her aids (they are pale pink), and they have brought her pure tone thresholds and her speech recognition thresholds into the normal range.

Initially, K was diagnosed with a mild unilateral hearing loss, so I was on the fence about aiding her. However, once a bilateral loss was suspected, I wanted to aid her immediately, especially as she seemed to struggle due to some conductive loss from colds and ear infections on top of her sensorineural loss.

My husband was initially opposed to aiding her because he did not think a mild unilateral loss was that big of a deal. He was also worried that she would be teased by other children and stared at by adults. However, I wanted to make sure she could hear as well as possible given the current hearing technology.

And I'm so glad we did aid her. Our audiologist thinks that K is one of those kids who could probably do fine or even well if we had not discovered her loss because it is mild and she compensates for it very well. I don't know if that's true, but I do know that having aids makes it so much easier for her. And while she developed language normally and on time, I want her to hear every sound to keep that language and speech development going full speed ahead. I also wanted to aid her so that she would get used to wearing hearing aids early in life, especially if her loss progresses.

Fortunately, no child has teased her as a far as I know, and when they ask about her aids, she just tells them they help her hear better - just the simple facts. Her social calendar is very full, and I'm thrilled to report that she did great in kindergarten and is reading well above grade level.

This year has been such a learning experience for me. While I wish I didn't have to learn all of the stuff I have learned about hearing loss and advocating for my child, I feel much more confident about my ability to handle this situation now than I did even a few months ago. I have met several children and adults whose hearing loss is much worse than K, and they're doing great with either their hearing aids or their cochlear implants. I have also met some signing Deaf adults who are leading very happy, productive lives.

K loves to meet kids who wear hearing aids or cochlear implants. Should she lose all of her hearing, I'm certain we would go the cochlear implant route because she has grown up in a hearing world and loves sound.

The hardest thing for me to handle is the uncertainty of the situation. I'm a planner, and it's hard to plan for hearing loss when you don't know if it will progress or not. So, I'm trying to take it one day at a time, one appointment at a time. It's tough, but I'm getting better at it.


Thanks so much Rebecca!  And good luck to K starting first grade!  If you are interested in being a featured parent or have a personal experience with growing up deaf or hard of hearing, please email me at bigteethclouds at gmail dot com.

Sunday, August 22, 2010

A celebrity sighting or just a trip to the ENT?

We're very fortunate to have a host of extraordinary professionals here in the greater Pittsburgh area.  One of these is Julia's Ear, Nose and Throat specialist, Dr. C.  He is a rock star.

When Julia's hearing loss was discovered, the audiologist gave me a list of things to do.  Among them was to see this specific ENT.  No other doctor would do.

The moms I met at various functions would ask upon meeting me, "who is your ENT?"  I would answer and then they'd spend fifteen minutes gushing about Dr. C.  I've come to understand that he's the man when it comes to cochlear implant surgery in Pittsburgh.

Fortunately, we see him just to check for general ear health.  He takes a peek every six months to make sure there's not a lot of ear wax gumming up the works.  We talk about how many ear infections Julia has had.  He's soft spoken and reassuring.

I didn't realize that I'd been assimilated into the Dr. C. fan club until the moment I saw him walking through the Orlando International Airport.  "There's Dr. C.!" I exclaimed with genuine enthusiasm.

My husband made fun of me.  He thought seeing Matt Damon would probably have garnered the same response.

After more than two years, these people are heroes in our world.  I mark the passage of time by appointments with the audiologist and ENT.  Regular reassurance from them keeps me from worrying too much.

So it was kind of like spotting a celebrity.  Only I got to see him again less than a month later.  And when we get together we mostly talk about ear wax.

Matt Damon isn't nearly so useful.

Sunday, August 15, 2010

Stress and the hard of hearing child

The AG Bell session titled, I Can't, I Won't, I Don't Want To, peaked my interest.  It's tough to distinguish whether the type of childhood anxiety we experience here at home is from hearing loss or perhaps just the manifestation of my DNA.  I was a high stress kid.  Julia has moments.  Either way, the stress is there.

I detect stress in her on days when she's been playing with her peers without me.  I try not to seem overly self-important here, but I do mom things that help her a great deal.  I use those deep knee bends to get to her level and speak at a rate that is easy to understand.  I give her plenty of time to talk.  I listen carefully to what she says.  I worry that I've created an alternate reality where communication is different than it will be during those full days of kindergarten.

I worry because I can tell when she's spent a whole day with kids.  Her emotions are on a hair trigger.  She seems more tired.  She's more apt to cry at a transition time or jump to a conclusion that leads to a meltdown.  She has stress.

So I was tuned in to this subject in Orlando.  I was hopeful that there would be answers.  As with so many parenting things, there are no absolutes.

The workshop pointed out that the difference between detection and understanding.  We may think our child is doing well because they detect a conversation.  They may not be fully understanding the dialog.  For this we are to give them "communication repair strategies".  An example would be to have the child indicate, "I don't understand" or to have them ask for clarification.

Two months after taking in this information, I've yet to put any "communication repair strategies" into practice.  I sometimes ask, "did you understand?  did you hear?"  I'm at a loss as to transferring this to a self-advocacy goal.  I don't know how to make her ask for clarification.

The presenters also suggested "listening breaks".  They mentioned some kids that like to take their amplification off for a few hours after school.  They said a child might benefit from quiet time in a small space where they can just relax.

The best I've done is to incorporate Julia's favorite play, our one on one time with Barbie dolls, into most days.  She has no interest in removing her hearing aids.  She has no interest in ever being alone.  She never wants to be quiet herself and would always engage me in conversation.  I do find that a good hour of playing with her and her dolls does relax her.  So we just have weird listening breaks.

Finally, they discussed previewing and preteaching as stress reducing tools.  I've been working on this in different situations.  We talk through who is going to be at an event and what we'll do.  I've also tried to give her some coping strategies for when she feels angry or sad.  We talk about the appropriate responses.

All of these tactics are trial and error endeavors for each child.  I've already crossed those completely quiet listening breaks off of my list.  I'm still not finding a substantial improvement with the other stuff. 

I'm left to wonder if I'm capable of teaching someone to manage stress.  I can barely handle my own.  Do you have any suggestions for conquering kid stress?

Sunday, August 1, 2010

AG Bell Session: Working Memory

While I was waiting for an AG Bell session on social media to begin, I overheard some people talking about the session next door.  It had drawn a standing-room-only crowd.  No wonder there were only a handful of people assembled to talk about twittering.

The next day, people were still abuzz with that popular session.  It was about "working memory".  Working memory is the ability to manipulate and access information in short-term memory.  The implication is that children with hearing loss have difficulties with their working memory.

A second working memory session by a different professional was offered the next day.  I attended with a smaller crowd, presumably the overflow that couldn't fit in the first one.  A study was presented where typically hearing children and children with varying levels of hearing loss were put through a program to increase their working memory.  Their language skills were tested before and after.  Improved working memory is thought to spur language development.

The researcher found what she deemed to be statistically significant improvement in the kids with hearing loss.  The kids improved their language skills by spending time on a touch screen computer duplicating patterns of flashing colors.  Remembering patterns enhances working memory.  It is thought that the benefits disappear as soon as the practice ends.

The experts attempt to draw a huge distinction between short-term memory and working memory.  They theorize kids with hearing loss spend a lot of energy to understand speech and have less brain power left for working memory.  The miserably boring task of replicating these flashing color patterns could help.

The concept is interesting, but there isn't any fix for use in the home yet.  The session served to bring me up to speed on the buzz words.  It can be difficult in our house learning new friends' names and learning new words.  I don't know if it's a working memory problem or not, but it's interesting to learn about this research.

Sunday, July 25, 2010

The evolution of ear molds

Julia's first ear molds were clear.  I remember feeling too stressed back then to think about color choices.  We picked flesh colored hearing aids, thinking they'd be less noticeable than a color.

The clear/flesh color combination was tough to see.  So tough that I had to get very close to my daughter to make sure she was wearing her hearing aids.  I was concerned in the beginning that she'd pull them out, drop them, and wander away while our Shih Tzu ingested thousands of dollars of equipment.  My anxiety led me to make frequent checks.

Clear ear molds get really gross looking, so on our next go round we chose flesh colored ear molds.  They had a pinkish cast with slight pink veins running through.  They were still tough to see but they stayed cleaner looking.  Julia was tickled that the ear molds looked pinkish.  Already our family was getting bolder.

After a solid year of the same fleshy color, it was time for Julia to choose a color.  She picked pink with sparkles.  Still tough to see, those sparkly ones have been my least favorite ear molds.  I have no proof, but I think they were the cause of her strange, dark ear wax.  I was happy to see them go.

At the most recent fitting, I guided my daughter to a bright pair of hot pink, purple and white ear molds.  I could have used these when she was just starting out.  In her ears or laying on the kitchen table, they're easy to spot.

The bold color signals a change in attitude too.  Finally, I like seeing her magic ears.


***
Cued Speech Update:  Yesterday was our first cued speech lesson.  So far we've learned enough to cue a short list of words.  With practice we'll conquer these first few hand shapes and get ready to learn more next week.  It's tough, but definitely accessible.

Sunday, July 18, 2010

AG Bell Session: Humor

Julia learned a new joke while we were in Florida.  It's a knock knock joke and I've explained it to her.  I'm not entirely sure she knows why it's funny. 

Knock knock.
Who's there?
Owls.
Owls who?
You're right, owls do say hoo!

This has momentarily replaced the knock knock joke punchlines, "orange you glad I didn't say banana" and "lettuce in it's cold outside."  If you've spent any time with a kid lately, I'm sure you know those ones.

Since we're already spending hours answering knock knocks and decoding inane Popsicle stick jokes, the concurrent session on humor as an auditory-verbal tool really peaked my interest.  I'm not an auditory-verbal therapist and my daughter has never been specifically taught in that type of environment.  My perspective is just that of a Mom that wants to help her little girl's emerging sense of comedy.

In the hour long session I discovered a lot of work we can be doing to understand the puns that grace our Popsicle sticks.  The presenter suggested breaking riddles into two parts and having the child tell everything they know about each part.

One of her examples was:  What kind of parties do lambs like?

The adult and the child can talk about all the different kinds of parties there are:  birthday parties, slumber parties, graduation parties.  Then everything you know about lambs:  they're also called sheep, they go baa, they have wool.

Then you're supposed to help the kid make a guess at the riddle.  The answer:  A sheep over.

This is a great thinking and listening exercise.  It's also more fun that other kinds of "work" that kids are asked to do.  I wrote a bunch of silly kid jokes in my notebook.

My next step is to get a book of jokes from the library.  Julia has been wanting one.  Now I'm somewhat professionally trained to work through it with her.  She'll soon be the Last Comic Standing, I'm sure.

Sunday, July 11, 2010

Slow signers

This winter Julia's hearing got a little worse.  We found that she was struggling a good bit with and without her hearing aids.  We decided that we'd start learning American Sign Language (ASL).  I'm convinced it will be a big help especially during swimming season.

We started with a DVD that taught us the alphabet and numbers 1-10.  We learned to sign the names of the rooms in our house and found that signing "bedroom" is one of Julia's favorites. 

Currently we're working our way through a little booklet called 100 Signs for Parents from DawnSign Press.  The American Society for Deaf Children mailed a copy with their welcome package.  I carry it in my purse so we can work on new signs while waiting in a restaurant or doctor's office.

Still our progress is pretty slow.  Julia tries to make sentences using the few signs she knows.  "Do not dance bedroom" is what she usually comes up with.  It's a very cute ASL sentence.  It's not very useful.  I'm sure it's grammatically atrocious. 

The AG Bell Convention introduced me to cued speech.  I think this could be the answer to our communication needs.  Cued speech a visual support to spoken language.  It should be easier for us to learn than ASL.  We will start lessons with a cued speech instructor some time this month.

Sunday, July 4, 2010

She heard that!

Today is Independence Day and there's a good chance you'll have already seen fireworks or plan on seeing them tonight.  I'm not that interested in fireworks unless they are in Disney World.  After ten minutes of a local display I'm pretty bored.  Ooh, sparkly.... Is it time to go home?

My Julia never tires of them.  We've taken her someplace each 4th of July since she was 2.  The first time we went to the Ross Community Center.  We'd say "boom" and she would repeat it.  She heard the fireworks boom and spontaneously said, "boom".

It was a language experience before I even knew that terminology.

It was also the first time we (wrongly) thought that her hearing something meant she could hear everything.  She could hear fireworks and the piano and the carpet installers banging staples into the floor.  She could point to pictures in a book after I named them.  She could point to her head and her toes when asked.

After more than two years of parenting a child with hearing loss we still say, "she heard that".  Julia sometimes hears the vacuum cleaner or the hair dryer without her aids.  She occasionally picks up tidbits of conversation that were said in a voice quieter than you'd think she could hear.

After more than two years of parenting a child with hearing loss I'm sure that she hears some things without her aids.  I understand now that it's not enough. I'm thankful that her "magic ears" keep her from missing most  sounds no matter how loud or quiet.

Monday, June 28, 2010

Was it really life changing?

The AG Bell Convention wraps up today in the sizzling heat of Orlando, FL.  As you read this I'll be taking in three final workshops.  My head is swimming with new ideas to try out in our home.

Yesterday was a marathon of concurrent sessions.  By afternoon my knees ached from sitting in a chair all day.  Was it that uncomfortable when I worked?  I can't remember.

Like school without quizzes or work without pay, the convention has still challenged me in many ways.  I've been taking notes the old fashioned way with a pen and paper.  I've met new people.  I've navigated hallways.

The weekend has forced me to take a break from my usual schedule of gardening, outdoor play, and evening blogging.  It has renewed my love for Pittsburgh.  Even though I'm not specifically homesick, I'm more grateful for all of the professionals and services that have helped with Julia's hearing loss.  Those things are not available to many of the people I've encountered in these few days.

My Sunday blog posts will be easy to write for the coming weeks.  There's a whole list of other blog posts in my notebook.  You can look forward to a rant about public restrooms, expensive hotel restaurants, and my aversion to Twitter.

It's too soon to know if my life has been changed, but I had sure had fun trying.

Sunday, June 27, 2010

Catching lightning bugs before hearing aids

Lightning bugs (fireflies) have been out for several weeks.  Our yard is a perfect habitat for them.  Julia has been out with the neighborhood girls way past bedtime collecting loads of the things in her buggy box.

She is really interested in the specifics this year.  What do lightning bugs eat?  How do they light up?
I figured I'd put off these important questions long enough one day while we were at my mom's house.  I took Julia on my lap to google it once and for all.

Before I opened the browser I spied an item on the desktop of my mother's computer.  It was a video clip called "Lightning Bugs".  We watched an eighteen second clip of Julia seeing the blinking insects for the first time.  She was about 2.  She didn't have hearing aids and we didn't know she needed them.

Julia didn't attempt to speak.  I listened to myself prompting her.  "Look, it's a bug.  Can you say BUG?  Catch the BUG!"  Julia didn't say anything.  She raised her small hands and tracked the flashing creature.

We didn't have a video camera back then.  I'm almost glad we didn't.  The few grainy cell phone/digital camera videos we have are painful for me to watch. 

Some are even more painful than this lightning bug one.

There's a video of Julia pretending she's reading stories aloud to me and Tim and his mom.  She was approximating speech at that time.  Her utterances were combination of a d-sound and vowels. 

We thought everything was okay back then.  Now that video sounds like a deaf child to me.  I wish I'd known then that she needed help.  I wish I hadn't spent a whole year frustrating myself and my baby.  I wish I could go back to that first night she saw lightning bugs.  I'd tell myself to get her hearing tested.  I'd tell myself that she's going to be okay and that in three short years she'll say so much more than "bug".

The best I can do now is to forgive myself.  I'm doing it one grainy video at a time.

Sunday, June 20, 2010

Expectations for AG Bell's Biennial Convention

Sometime last summer, my writing on this blog found an audience among other parents of children with hearing loss.  After some intermittent posts that received a good response, I decided to dedicate Sunday to posts about hearing topics

Then I got a big glossy postcard in the mail from AG Bell.  Their 2010 Biennial Convention was coming up and I felt it calling me.  I was finally doing something beyond living in our little bubble of audiologist appointments, speech therapy, and IEP meetings.  I was interacting with the world and wanting more. 

With support from Prilosec OTC, I will be attending the conference which has been described as a "life changing" event.  Days away from having my life changed, I'm getting pretty excited.

Next weekend will be chock full of the best advocacy and early childhood education workshops to be found.  There will be a whole introductory session to help first time attendees make the most of their experience.  Will I have to choose a learning track or can I mix it up?

My expectations are high.  I hope to learn lots of great stuff to bring home to my Sunday readers.  It's less than a week away.  Did I mention I'm excited?

Sunday, June 13, 2010

The first big girl booth test

At the end of May, Julia returned to the audiologist.  It had been only three months since the last test.  She's on a more frequent schedule because her middle frequencies have gotten a bit worse.

The booth hasn't been a great thing to witness in the past few appointments.  Julia had been difficult to keep on task and didn't seem too interested in feeding elephants, monkeys, dogs and rabbits as part of her conditioned response to hearing a sound.

Our audiologist decided for the most recent test that Julia was ready for "conventional audiometric test procedures".  What a difference!  I think Jules relished hearing the audiologist throughout the testing. 

She had to repeat words for the word recognition test rather than pointing at pictures.  She shouted her responses so loud I wished I had ear plugs.  Julia proudly pronounced every sound in each word.

Conventional procedures call for the child to raise their hand after hearing each sound.  Julia was quite enthusiastic with this one as well.  She did an all around outstanding job.

Last night, I got the two page written report titled: Audiology Evaluation.  It included a new audiogram and a detailed description of the tests and results.  It didn't mention how the audiologist turned down her headphones to keep from having her own eardrums injured by the enthusiasm of my young child.  It left out how proud she was to raise her hand as soon as she heard each "whistle".

Thankfully this post will round out the report because those were details too precious to forget.

Sunday, June 6, 2010

An implantable hearing aid

A "soundbite" in the current issue of Volta Voices caught my eye.  The FDA has approved the first "completely implantable hearing aid".

A visit to the Esteem website proved a bit emotional.  Right there on the first page, two smiling people are fully underwater.  Julia would jump for joy if I told her there's a chance she could hear while swimming some day.

I found a blog, Building My Self Esteem, of a woman implanted in 2008.  From her description, she's hearing much better with this technology.  Her kids aren't getting away with much anymore.

There are all kinds of specifications and requirements, one is that the patient must be 18 to be implanted.  The hearing loss must also be stable.  There are a lot of years between us and any decisions about this kind of surgery.

It's an interesting thing to dream about.

Sunday, May 30, 2010

Preventing swimmer's ear

One of the biggest challenges of our first summer with hearing aids was swimmer's ear.  The audiologist impressed upon me that the aids should never get wet.  I started the very day she got hearing aids, carefully drying her hair after Water Tots swim class.  Then I put her hair in a pony tail, put the hearing aids in, and we went about our day.

We got away with it for a little while before the first outer ear infection sent Julia into a screaming, crying lump on the floor.  She gave me a bunch of trouble getting the hearing aids in.  We were off to the pediatrician.

Twice that summer we had to do ear drops and leave the hearing aids out for multiple days.  I was horrified to leave her without amplification because she was still struggling to develop speech skills. 

As it turns out, hearing aid wearers in particular need to be really careful about making sure the ear is completely dry before inserting a hearing aid.  Some use a hair dryer at a safe distance.  I feel more comfortable using the corner of a soft towel to dry each ear.  Then I pay attention to the way the ear molds slide into her ear.  If the canal is still wet you can hear and feel it ever so slightly.  I'll take them back out and dry them again. 

Each summer we mix up a batch of our own homemade preventative:  equal parts white vinegar and rubbing alcohol.  Two drops of that go in each ear before bedtime on swimming days. 

After a rough start, we've been able to keep two nice healthy ear canals all summer long.  It takes a little extra work, but these two steps ensure Julia can swim and then return to comfortably wearing her hearing aids.

Sunday, May 23, 2010

Childhood hearing loss support group

A couple of weeks ago, I attended a parent forum put on by the Pennsylvania Department of Health called Investing in Family Support.  The invitation indicated that they were looking for parent's experiences and suggestions regarding the Newborn Hearing Screening Program.

This was, by far, the most interesting program I've attended.  I often feel awed by the mothers at these events.  These women have been advocating and serving on boards, some of them for more than a decade.

After a review of the Newborn Hearing Screening Program (ironic for me because Julia passed her newborn screening), the discussion moved to ways to support families of children with hearing loss.  PA is working to develop some type of formal support group.  Seven moms and a grandma had a lot of ideas about how that should work!

It was a great reminder to me of how much we need each other.  Even after getting over the initial shock and conquering a speech delay, there are new issues coming up.  It helps me to talk (or in this case write) about things as they come up.

Julia is very fortunate that we live in an area where she can go to a playgroup with two little boys that also wear hearing aids.  She might be "different" than all of the kids on our street and maybe even the only kid in her whole elementary school with magic ears, but at least she has met other children with hearing loss.  I get to talk to their moms every week. 

Many families won't often run into anyone in their same situation.  Another support system would be appreciated.  It could be like match.com for parents of deaf/hoh kids.  I would sign up.


***I have already signed up for the existing PA support group called Parent to Parent of Pennsylvania.  If you are looking for other families to talk to about physical/developmental disabilities, behavioral or mental health concerns, foster care, adoption, educational issues, or any other special need you can contact Parent to Parent through their web site or by calling (888) 727-2706.

Sunday, May 16, 2010

Mommy, I'm different....

Julia has been telling me that her hearing aids make her different. 

"Mommy, I'm different than the girls in dance class.  I have magic ears."

I went through a whole self-esteem building exercise with her on that point.  She's got a lot of things that are different about her.  She has things that are the same.  We listed lots of traits and whether they were the same or different from her dance class friends. 

I thought I'd done a pretty great job parenting on the point.

A couple of days later:  "Mommy, I'm different than the neighbor girls.  They don't have magic ears."  I let it go.

She keeps bringing up people who don't wear hearing aids and pointing out that she's "different".  I don't even know that she feels anything about it.  It is just a fact.

It's a fact and I don't have much to say.  I wonder if I should tell her how kids made fun of my glasses or my scoliosis brace.  But she's not being teased, so I figure I'll save those for another time. 

I could read that weird book by Mr. Rogers to her again.  Everyone lives on a purple planet and they're all called Paul or Pauline.  It's supposed to make you think how awful it would be if everyone were exactly the same.  I posed the question to my daughter and she thinks "that would be cool".  So much for diversity.

I don't know what to tell her.  It's a tough moment in our day when she starts with "mommy, I'm different."  It takes all I have to keep from saying, "Of course you are baby, you're way smarter than everyone else!"

Sunday, May 9, 2010

Hide and seek with hearing aids

Julia has been learning to insert her hearing aids in her own little ears.  It was going well.  Then without even thinking anything of it, I handed her both hearing aids and went downstairs to make dinner.  

Julia had just spent and hour in our big bathtub pretend swimming.  Bathing suit, snorkel, diving rings, and goggles; she had the whole deal.  Afterward, I had dried her hair and tied it up while she was still naked.  When I left her she was diligently working on her right aid.

She was supposed to finish with the hearing aids and then go put on clothing.  Thirty minutes passed as I worked on assembling tacos and making some Rice-a-roni.  I was enjoying the time as I thought she was entertaining herself.

Then I hear a soft voice, "Mommy, I can't find my magic ear."

I abandoned the Rice-a-roni to find a strangely dressed child wearing one hearing aid.  She lost a hearing aid and just wandered off to get dressed.  Ever think of looking for it before you go put on your Little Mermaid dress?

"I can't find the other one," she says.
"Where is it?"  I wanted to know.  I guess that was a dumb question.  She didn't know where it was.

I started the sort of frenzied search that never allows a person to find anything.  All the while I'm bombarding her with questions in a raised, unhappy voice.  She just sat on my cedar chest in the same place I left her when she still had two hearing aids.  She seemed unaffected by the drama that was playing out.

All kinds of thoughts went through my mind:  toilet, chewing by dog.  I wondered if she hid it on purpose.  I tried to collect myself and sat down with her.

"Tell me exactly what happened," I told her.  "Start with what happened right after you finished putting the first one in."
"I took the other one," she said while taking a deep breath, "and I threw it up in the air.  I'm very afraid it's on the ceiling fan."

For crap's sake.  If you can imagine, I really do pseudo swear even in my own mind.  I headed downstairs to call for reinforcements.

I had to flag the Dad down because he was mowing the lawn.  I explained the situation to him and he immediately began searching the bedroom with me.  He asked her to explain what had happened.  At that moment she began to show emotion.  Mom had been flipping out for 15 minutes but suddenly having to tell Dad what happened made her feel all BAD. 

"You are not ready for a slumber party," I hissed.

Then I moved the cedar chest and found the hearing aid safe and sound underneath.  Lots of deep breathing later we decided as a family that she might still have her slumber party reward if she can demonstrate responsible hearing aid care in the meantime.  Not throwing the things at the ceiling fan will be a good start.

Sunday, May 2, 2010

Motivating hearing aid independence

I decided Julia should learn to put her hearing aids in on her own.  We'd tried it just prior to getting new ear molds.  She was doing okay until the new sparkly ones were too snug and sticky for her to get in on her own.

Months later, she's turned 5.  Her ears have grown just enough to allow easy ear mold insertion.

I tied her hair up and gave her a speech about the red dot showing which one is for her right ear.  I handed her the hearing aid and put her in front of a mirror.  I explained which part of the mold lines up with which part of her ear.  I demonstrated.  I coached.

"I can't do it," she said.

She'd barely tried, essentially smashing her hearing aid at her ear in a haphazard fashion.

"You're not trying," I said calmly.

We were about 20 minutes into a task that I could do for her in 20 seconds.

"If you can't learn to do this on your own," I told her, "you're not going to be allowed to go on a slumber party with your cousin."

"I can do it!" she shouted.

Those hearing aids were in and turned on in a couple of minutes.  Each following attempt was successful and met with an excited girl screeching, "Mommy, I got to the point!  I can go on a slumber party!"

The slumber party is scheduled for May 21st.  She can do anything.  All it takes is proper motivation.

Sunday, April 25, 2010

Reflecting on the months before magic ears

Julia's hearing aids had their second birthday on Friday.  This time of year makes me think about the time right before she got the aids.  We knew our lives were about to change.  We didn't know how.

I'd taught Julia a few signs in an attempt to ease our communication.  She knew "more", "all done", "eat" and "loud".

In the beginning of April 2008, we had carpet installed in our townhouse.  Julia and I spent two days trapped in the top part of the house with a lot of extra furniture and the dog.  Below a couple of carpet installers chatted in Spanish and banged around.

We signed "loud" a lot during those two days.  She could hear the boom of the installer's big stapling contraption.  She was fascinated to the point that when the carpet was done and the men left she signed "more loud" and told me in her very best approximation, "want more loud".

That day has always weighed heavily on me.  She wanted to hear and couldn't.  I didn't know.

I try to focus on the past two years.  We've had loud and quiet.  Even whispers.  It's better than I could have imagined.

Friday, April 23, 2010

Hearing age: 2 years

Children with hearing loss have a "hearing age" which is the time that has passed since receiving amplification.  Julia's hearing birthday is today.  Her hearing aids are two years old.

The months leading up to our big day when the audiologist finally dispensed hearing aids were the toughest I've experienced as a parent.  We still had a lot of denial.  We had to push back Julia's ABR test which was the one thing holding up the hearing aids.  I worried that every passing day was going to adversely impact her ability to catch up to typically hearing kids.

When we got to the audiologists office on April 23, 2008, I was anxious to see what Julia's reaction would be.  I had decided that the first words she'd clearly hear me say would be "I love you."

By the time the hearing aids were in and turned on, I had forgotten about memorable first conversations.  My little girl sat stock still with her little knuckles turning white as she grasped the arms of her chair.  She was afraid.

It was the first time in my life I listened to everything.  I heard a fan.  A chair squeaking. 

The audiologist pointed out that these things had never been audible to Julia before.  The refrigerator running would be disproportionately amplified by the aids.  It would be really loud for her.  Background noise that I never noticed would be loud and scary.

Before we left the office she'd already tried to repeat "father".  I forgot to tell her "I love you" until we were on our way home.  Tim and I could tell right away that the world was going to be a lot different for our child.

We've accomplished everything I'd hoped we would in the time since she got her magic ears.  You'd never know by talking to her that she's only been hearing well for two years.  She's an amazing little girl.

Sunday, April 18, 2010

Watching TV at a reasonable level

Julia's insurance approved the purchase of a personal FM system for us to use in our very own home.  We pursued getting one of our own because DART will be repossessing theirs in a few months.  The school district will keep all equipment in the classroom when kindergarten starts.  We'd be left with nothing for dance class and extra curricular activities.

After having the FM for a week, we're already using it way more than before.  Tim got a cable to hook it up to our TV.  We can watch a movie with our daughter while the sound is at a reasonable level.  It plays right into her hearing aids and she's getting a lot more out of TV time.  I'm happy that the sounds of Star Wars don't take over the entire house!

We'll be able to plug the FM right in to my computer or a portable DVD player so she can hear a movie on the airplane this summer. 

And we're guaranteed to have the additional support she needs for dance, soccer or whatever she decides to take on in the future.  We love our FM!

Sunday, April 11, 2010

Self advocacy amusements

It was really hot last week and the two sisters next door were in their bathing suits to jump on the trampoline while it was being sprayed with a hose.  Julia adores this trampoline and barges in on it at every opportunity.  This day, she couldn't because her hearing aids can't get wet.

We're new to the neighborhood and these "will you play with me?" conversations are a bit awkward.  Julia goes up to the youngest of the neighbors and says hello.

"I can't go on there with the water.  I can't get my hair wet," Julia tells her.
The other little girl is swaying shyly.
"I wear magic ears," Julia continues.

At this point I prompt Julia to show the girls her hearing aids since they probably have no idea what she's talking about.

Julia lifts her hair and says, "These are my magic ears.  They help me hear.  Without them I can't hear very well.  You have to talk really loud.  Look, these are my earrings and these are my magic ears.  Can you tell the difference?  It's very confusing."

She also pointed out that she was wearing aqua socks and it is okay if they get wet.


Self advocacy will be a goal of ours for quite some time.  Julia has to be able to position herself to hear in the classroom and social settings.  She needs to be able to explain her hearing aids to her peers.  My husband and I felt reassured listening to this conversation.  She advocates for herself pretty well already!

Sunday, April 4, 2010

The Art of Reading Aloud

This week I attended a program at the DePaul Institute called The Art of Reading Aloud, Reading Skill Development through Literature.  As always, the people at DePaul put on a great event open to all parents/grandparents of kids with hearing loss, not just DePaul families.

A hearty amount of the discussion dealt with building reading comprehension skills.  As parents, we should be asking questions to make sure our little ones are understanding what is read.  I've been surprised since working through 90 of Julia's reading lessons (Teach Your Child to Read in 100 Easy Lessons) how well she can answer questions based on her own reading of simple stories.

When I read to her, it's a challenge for me to think of questions to ask that will help her get to a higher level of thinking about more complex stories.  This workshop has made me aware of the times I read without really knowing if she's paying attention.

Now I've been armed with a list of questions to help her uncover deeper meaning and help her draw on her own experiences to understand the story.  I'm interested to ask her how she'd have ended some of her favorite stories if she was the author.  We're sure to uncover some big ideas and hopefully she's well on the way to becoming a strong reader.  I'm really anxious about conquering spelling, but that's a battle for another day!

A list of the free programs available for parents at the DePaul Institute is available on my resource page.  I highly recommend finding workshops like these in your area.  They really help you to think about the time you spend interacting with your child in a productive way.  Every story and even every household sound is an opportunity for auditory growth.

Sunday, March 28, 2010

Classroom strategies for mild/moderate hearing loss

IEP time came for us again in February.  Having moved from one county to another and then back again, it seems like a lot of meetings for one little kid.  Now we're in our forever home and have written the all important IEP that will be used for her transition to kindergarten.

There are only two goals this time.  Speech has been conquered and now the task is to make sure she continues to grow as a listener.  The first goal is to maintain her skills.  The second is about following directions.  This IEP will hopefully keep her from falling behind because of her hearing loss.

Julia's Teacher of the Deaf and Hard of Hearing wrote a great list of strategies needed to achieve these goals.  They are:
  • Minimize background noise
  • Use preferential seating in a large group with appropriate access to peers and teacher
  • In small groups and one-on-one situations seat Julia in front of or next to the speaker
  • Utilize auditory sandwich techniques (presenting information verbally, pausing to wait for a response, giving a visual clue, then repeating verbal information)
  • Provide extra time for processing
  • Provide acoustic highlighting techniques to enhance the audibility of spoken language (whispering or emphasizing a specific pitch)
  • Use rephrasing and repetition to supplement verbal instruction
  • Model appropriate language
  • Expand and extend Julia's spontaneous utterances
  • Speak at normal conversational levels at close range
  • Identify who is speaking and repeat/paraphrase information stated by her peers
  • Use a varied vocabulary with Julia to convey a variety of concepts
  • Give breaks from listening
  • Encourage Julia to use clarification as needed and begin to self-advocate
  • Implement the proper use of an FM system
We've come so far, but there's still a lot to be done.  Like me, Julia has significant difficulty understanding other kids. Most recently she complained that with her FM she could only hear her dance teacher and not her friends.  We're continuing to learn and adapt as a family with the above list of strategies as our guide.

Tuesday, March 23, 2010

I won sponsorship from Prilosec OTC!

For the past few weeks I've been asking all of my friends, family, and blog followers to vote for me to win sponsorship from Prilosec OTC to attend the AG Bell 2010 Biennial Conference.   I'd been carrying this postcard advertisement around for a few months before the sponsorship opportunity came up.  I'm especially interested in sessions dealing with advocacy and policy for children with hearing loss.

The announcement was made Friday (Julia's 5th birthday).  I am officially the Official Prilosec OTC Childhood Hearing Advocate.  I'm going to the big convention!

Though I'm decidedly camera shy after my appearance on local TV and various embarrassing home movies, I'm going to have a blog on Prilosec OTC's web site where I'll post videos.  That starts April 1st. 

Thanks to all of you that voted for me!

Sunday, March 21, 2010

Part Three: Paying for Hearing Aids

Today's post is the final part of the series based on the research paper, Are 1 Million Dependents with Hearing Loss in American Being Left Behind?  By Sergei Kochkin, PhD; William Luxford, MD; Jerry L. Northern, PhD; Pam Mason, MED; and Ann Marie Tharpe, Phd.  The first two posts covered denial and stigma as reasons given by parents who choose not to aid their children.

The financial burden of hearing aids is, to me, the most understandable reason for letting a child go without hearing aids.  Private insurance does not cover hearing aids.   In most states, the burden falls to parents to pay for their child's aids.

There are some alternatives to insurance that will help with the cost.  The following bullet points with links to sources of funding are copied directly from the American Society for Deaf Children:


If all else fails and you can't afford hearing aids for your child, look into having a sound field installed in the classroom.  Section 504 of the Americans with Disabilities Act requires schools to provide assistive technology.

Friday, March 19, 2010

Silent Mommy

The whole family came down with a mild cold this week.  Julia had it first.  By the time Tim got it I was pretty sure the thing was unavoidable.  I'm about four days in now.

Sinus headaches, joint pain, and a runny nose are annoying enough when you're chasing an energetic youngster around.  I had all that and I lost my voice.  I spent the day yesterday ranging from decreased volume and squeaking to nothing but a faint whisper.

Julia couldn't hear me.

I'm used to repeating myself and talking louder than normal.  I even spell things sometimes which amazes me because a preschooler shouldn't be helped by that kind of thing.  I found myself trapped with no extra volume and no vocal stamina to repeat each phrase until she got it.

I explained the situation several times.  She didn't get it.  I think it was the most miserable day we've had together since the stress-induced tantrums just after she turned four.  She didn't kick or bite me, but she seemed injured because I couldn't hold up my end of the conversation.  That hurts worse than being bitten.  By late afternoon she was fed up with me.

Dad had to read the nighttime stories and Julia said her own prayers.  "Help Mommy get over her cold," she said.  Please do.