Magic Ear Kids

The stuff of better hearing

2012-01-27T10:26:00.000-05:00

Last June, Julia got new hearing aids. After three years with her flesh colored Phonak eXtra aids, she upgraded to Phonak Naida's.

I still can't pronounce that word, "Naida."

The new hearing aids are more powerful. They have more features. Most importantly, they are light pink.

Naida's wirelessly communicate with a device called an iCom. The iCom links to phones and allows Julia to listen to her iPod without me listening to her iPod.

The new stuff is pretty cool. Though at some point, I was blown away by the sheer volume of stuff we now have.

The first hearing aids came with an Oliver the Elephant pack filled with little tools, FM boots, and accessories.
I took to saving ear molds. The first set because she was little and her ears were going to get bigger. (Tiny ear molds were going to be like cute toddler hand prints.) Subsequent molds have been saved for reasons I cannot quite identify somewhere between nostalgia and utility. We might need those old rock hard impressions some day...
We soon added a personal FM for home use.
The third pack of stuff arrived with the Naida's. A cute bag filled with much of the same stuff that we still have in the first bag. It's all organized, waiting for some possible use.
Our original Hal-Hen drying jar should probably be thrown out.
A brand new Dry & Store for fancy drying and germ killing.

Over the years, I'll have to learn how to let go of some of this stuff. Right now, it's a very visual reminder of our many blessings. The technology exists and we have access to it. I love the stuff!

My review of the Hal-Hen drying jar and the iCom are part of my Yahoo! Voices profile.

A spritz a day keeps the pressure positive

2011-12-03T21:01:00.000-05:00

For years, we've been battling negative pressure. It's the stuffiness that lingers even after a cold. It's the goop that keeps ear drums from moving the way they should. It's been a real bother.

When I last complained about our tympanogram woes, I was looking forward to a summer trip to the audiologist. Surely, there could be no illness that would be impacting Julia's hearing in June.

Wrong.

In June, her left ear was clear. The right still had negative pressure which caused it to test 5-10 dB worse that the left ear.

The pediatrician suggested Zyrtec, so Julia dutifully learned to swallow a small pill every morning. Months passed and she was still stuffy. By fall, I'd had enough.

I made an appointment with a childhood immunologist/allergist. I feared Julia might be allergic to our house, me, or possibly her own self. Zyrtec didn't work, I was on a mission to find answers.

The allergist proved to be a torture chamber of epic proportions. They wrote on her back with a pen! They scratched her delicate skin with a white plastic thingy resembling the device that keeps the pizza box from collapsing into the cheese! They made her get one itchy bump!

At least she's allergic to something, I thought. It would be a shame to have made her scream like a two-year-old and still have no answers.

Wrong again.

The itchy bump was the "control." Julia is allergy free. Good news to be sure, but I admit to feeling a bit bummed. Surely, something is causing the chronic congestion.

The allergist prescribed Flonase. Each day my iPhone sounds an alarm that helps us remember to spritz Julia's nose with the very flowery-smelling drug. It's a miracle. In two weeks the congestion was gone.

Last Thursday, we returned to the audiologist. Julia cheered when the computer screen showed those two humps on the right side of the screen. "My ears are clear," she exclaimed.

Tim and I laughed. Then high fived. The ears are clear. The 5-10 dBs restored. Julia's hearing, for now, is stable. And Flonase is one of my new favorite things.

Providing a "rich" language experience

2011-10-12T14:42:00.000-04:00

During a heated game of Monopoly Jr., a distressed Julia exclaimed, "Barn it!"

It wasn't "barn" she said exactly. It was something though that quite resembled "darn." I knew she was effectively trying out a new pseudo swear she'd half heard at school.

And here I am, squarely in the middle of a dilemma I knew was coming. Do I correct pronunciation of words I don't want her to say?

Some parents of deaf/hard-of-hearing children purposefully teach their children curse words. I once read a mother's blog post about equipping her deaf son with the whole English language. She didn't want him to be left out and so she personally clued him in.

I can't do it.

In six and a half years, I've kept almost all unsavory language in the confines of my own mind. Out loud I say, "shoot" and "oh man" and "holy cow." Sometimes the word "crap" slips out. I remind myself to be more careful. I don't think little kids are cute when they say it. Especially not my little kid.

I must leave this one up to the rest of society.

I handled the first mangled potty word to come home by teaching her the correct pronunciation. Then I told her we don't talk like that. Someday, I might have to explain why we skip "F" when we rhyme with duck. Hopefully by then she'll have some advanced skills to supplement her hearing, her classmates can write it down.

The importance of special needs playgroups

2011-08-02T12:35:00.001-04:00

At our first IEP meeting for Julia, Tim and I were determined to get her placed in an approved private school for the deaf. We thought that intense environment was the way we could be sure she would learn to speak. We were hungry for a sure thing.

The other part of the IEP team didn't see things our way. They told us about least restrictive environments and how it would be harmful for Julia to spend all of her time with deaf and hard of hearing kids. I couldn't imagine developing a network of friends with similar challenges being anything but a benefit.

Fortunately for those professionals involved in the meeting when my daughter was three, Julia did learn to talk. She impresses us with her completely intelligible speech during every waking moment of the day. I also made sure she connected with some friends that also have hearing loss.

I didn't give up on allowing Julia to makes some "magic ear" friends because of my own experience growing up as the single solitary child in southwestern Pennsylvania that wore a Milwaukee brace. I know that if it had been hearing aids rather than a scoliosis fixing appliance, I'd never have seen a person under the age of 60 with gear like mine. It's a bit lonely. There are times in life when an individual is the last thing you want to be.

We have a playgroup that meets regularly so we can keep in touch with kids that deal with every sort of hearing loss: unilateral, mild, profound, and Julia's severe. The kids use all kinds of equipment. They admire each other's newest selection in ear molds. The parents always have something to talk about.

Sharon Clougherty, director of early intervention for Achieva, was quoted in the Pittsburgh Post Gazette this May saying, "A decade ago, playgroups were a 'recognized and funded format' for children receiving state-funded early intervention services. They are no more. The state won't fund them."

Luckily, there's no funding necessary. All it takes is a little planning, some advertising, and a bit of help from the professionals that work with your child. The kind of support you get from group of families in a similar situation is well worth the work to start your own group. And if you and your deaf/hard of hearing child happen to live North of Pittsburgh, please join our group. We'll be happy to have you!

Swim class

2011-07-12T20:50:00.000-04:00

For the past two summers, I've thought about enrolling Julia in a swimming class. She is a true water baby, a fearless, underwater mermaid type.

Swimming is complicated. We've learned a bit of ASL and I talk pretty loud right in her ear. We get by together at the pool.

Group instruction with Julia unaided seemed pointless at best. Thinking that someone must have encountered this problem before, I talked to people at the Western Pennsylvania School for the Deaf. They had no advice.

Finally, friends of ours told us about a fantastic swim class offered by a local woman in her backyard pool. I signed Julia up. Then I had the requisite two nights of anxiety dreams while anticipating the start of class.

The program is fabulous, but the setting still presents many challenges. One of the instructors, a teenage boy, turns his voice off and makes exaggerated lip movements. He also attempts to pantomime. I told him that he can just talk loud at close range. He seems to think that's weirder than what he's been doing. Eventually, I plopped myself at the side of the pool to keep Julia from floating into the deep end while simultaneously directing her to stay above the water while they're demonstrating new strokes. I repeat some of the directions loudly into her ears.

I sign "pay attention" a lot.

I feel tired when the class ends.

The effort seems to be paying off. There seems to be some structure being added to her movements. She taught her instructors how to sign "kick." Surely, by the end of class they'll also pick up "wait" and "pay attention."

Everyone is learning and I'm proud of us. Truly, anything is possible.

2012 PA Budget Still Without Funding for Newborn Hearing Screenings

2011-06-15T14:16:00.001-04:00

Out of the billions and billions of dollars the Commonwealth of Pennsylvania will spend in 2012, Governor Corbett and state lawmakers have opted to spend $0 on the Newborn Hearing Screening Program.

Currently, the Pennsylvania Newborn Hearing Screening and Intervention program seeks to assure that all newborns:

are screened for hearing loss within the first 30 days,
are diagnosed within three months, and
receive prescribed treatment or intervention services within six months of birth.*

We have one more chance to contact our state senators. Please email me (magicearkids at gmail dot com) for a list of main points you can use in a letter to your senator.

*List of program goals taken from the PA Newborn Hearing Screening and Intervention web site.

Growing up hard of hearing: Our buddy, Alex

2011-05-24T20:45:00.000-04:00

Julia and I first met Alex a couple years ago. He was part of what we called "Magic Ear School," a hearing impaired classroom put on by our county's early intervention program. We got to know Alex, his mom, Tina, his dad, Rich, and little brother, Ethan while standing outside the preschool classroom.

Alex, now 5 1/2, wears bright blue hearing aids.

Julia is constantly asking me what I'd wish for if I found a magic lamp/wand/star. One day she said, "I wish there was just one sound I couldn't hear and everything else I could hear with my ears just plain."

"Wouldn't you just wish to be able to hear everything?" I asked.

She thought about it for a while. Then she says, "no, I wouldn't wish for that. If I didn't wear hearing aids I wouldn't get to go see my audiologist. I wouldn't get to play with Alex."

Playing with Alex is that fun.

I asked his mom, Tina, some questions about their experiences and learned more than I ever could have in the preschool parking lot!

When did you find out Alex was hard of hearing?
We discovered Alex hearing loss at age 3 1/2.

How did you come to the decision to get him hearing aids?
We decided to aid Alex after a time period of him complaining of his right ear bothering him and ringing off and on. We had made a trip to the ENT and audiology for a hearing test. At the time he had fluid and infection and was going to get a 4th set of tubes in both ears and get his adenoids out. A month after that surgery we were to come back for a check of his ears by ENT and hearing by audiology (all taking place at Children's Hospital). At this point in time his hearing test showed the same result as a month earlier before the surgery and it was then decided to aid Alex.

Alex is in kindergarten this year. How is that going?
The first year of school has been good. It took some time at the beginning of the year to get Alex's hearing support services set up because we sent him to a private school. We had to dual enroll Alex in the public school district as well as his school. The public school provides Alex his hearing support services through the county's educational services and support division.

Alex seems to have transitioned well into Kindergarten overall.

Soon Tina and I will be parenting first graders. I just can't emphasize enough how wonderful it's been to meet and talk to other parents of kids with hearing loss. Thanks for being interviewed, Tina!

Welcome!

2011-04-24T21:17:00.001-04:00

Please explore the tabs at the top of the page for resources and the personal experiences of myself and others that are parenting children with hearing loss.

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 magicearkids at gmail dot com.

Parent Profile: Dr. Schorr

2011-04-24T20:21:00.001-04:00

Today we get to meet a mom and developmental psychologist who specializes in the unique social and emotional development of children with hearing loss.

Dr. Schorr's Story

My son Moshe had severe neonatal hyperbilirubinemia (bad jaundice) that caused his hearing loss. He failed the hearing screen when he left the NICU. The neurologist who followed him made the diagnosis at 2 months. He did not react in any way to sound.

Moshe's hearing fluctuated dramatically for three years and he got hearing aids at age three. I remember taking off of work to be with him the day he got them, thinking that he would need his mother if he would have such a life-changing, life-defining thing like hearing aids! I laugh now, since he is such a regular kid, doing regular things and his hearing aids are really not the most important part of him.

My son has had a lot of challenges in school along the way. He is now in 9th grade at a rigorous high school. I think that the hardest part has been not hearing everything the kids were saying and therefore, not knowing exactly what is going on. He is still coping with this challenge and it gets harder for parents to be involved when kids get older.

My website, Hearing Families, is dedicated to parents of children with hearing loss. I use it to share experience on issues that often fall between the cracks of professional expertise - not audiology and not speech. I focus on social and emotional issues that are very important to parents raising a child with hearing loss.

My main message is high expectations and realistic situations! That means to have high expectations. Children are a product of their expectations, if we give them the message that they CAN do it, they just might! At the same time, I encourage parents to think about things from their child's perspective and keep situations realistic enough that their child can succeed. Set them up for success.

Thank you, Dr. Schorr! Social and emotional issues are a very important part of the equation. I'm glad you've provided us all with resources to conquer that type of problem.

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 magicearkids at gmail dot com.

Hearing Loss Profile: Kym

2011-04-24T06:00:00.024-04:00

Today's profile is a deaf adult and the parent of a son with mild hearing loss.

Kym's Story

My name is Kym and I run the blog 'Cuteness of Curiosity'. I blog about my crafts, hearing loss, LGBT issues and my wonderful family. I live in New Jersey with my wife and our 2 teens. Our son who is 12 1/2 has mild bilateral hearing loss. I enjoy French movies, reading, gardening, the beach and am an avid cross stitcher and run a small shop on-line. I work full time at a craft/art store and I love it. Although, being deaf makes it challenging dealing with customers. But, I love a challenge, so it certainly makes the job more interesting!

When I was 9 years old, I had the Mumps and a high fever which caused profound deafness in my left ear. As a teen I started to lose my hearing in my right ear and was diagnosed with severe/moderate hearing loss in my right ear. I refused to wear hearing aids at the time, I just didn't think they were 'cool' at that time, so my studies suffered terribly because of this. I social bluffed my was through my young life and it got me through, as well as leaning on my friends to help me. Now that I am older, I realize how wrong this was and I wish I would have done things differently.

For years I had been wearing two bte hearing aids from Beltone. Now, I wear just one in my right ear. I also use a Assisted Listening Device in certain situations, I've also used CART, a note-taker and interpreters. In my 20's I started taking classes in ASL. This changed my life. Once I met other deaf and hard of hearing friends and was able to sign and use other communication techniques, without just having to smile and nod and not understand all the time. Sign Language has been my most affective means of communication with family/friends. I also am not afraid to let people know I am deaf and that I may need them to accomodate me in different ways.

My advice for parents is talk to your school, let them know if you need special educational needs, a 504 plan or an IEP. Do what you have to do to make sure your child is accommodated, so they don't miss out on any part of their education. See if your state has a Deaf/Hard of Hearing Organization that can come to your child's school and educate the staff on hearing loss and amplification tips. Keep an open line of communication with your child so you know what needs may not be met and that you can help with. Give your son/daughter lots of love, hugs and kisses and be their support system. Depending on the hearing loss maybe they would benefit from Deaf School Education.

And don't forget ASL it could open many wonderful doors for you and your family.

Next week, we're going to an ASL workshop. Such timely advice from Kym!

Happy Easter!

Playing in the rain

2011-04-17T06:00:00.036-04:00

Quite some time ago, Tim suggested we get some kind of water resistant wrapping for Julia's hearing aids. She could then have a bit more freedom around water and in light rain. She could, he thought, wear the aids in some situations that we currently deal with by taking them out.

I was opposed to the idea.

You might say that I'm overprotective of Julia's hearing aids. The thought of sending them in for repairs makes me sweat. I have this nightmare scenario replaying in my mind where Julia has to go to school without her aids. It is my personal Armageddon.

I figured we'd always just be safe and take Julia's aids out to play with squirt guns. We'd always have a raincoat or umbrella. We'd never ever let her play in the rain.

Then spring soccer happened. After four consecutive canceled practices, the team finally played on a sloppy muddy field. If that wasn't harrowing enough, the next practice was in a mild rainstorm. Julia played soccer in a waterproof windbreaker with the hood up.

On the way home from that second practice, I had to admit he was right. We need a waterproof wrapper for the hearing aids. Ear Gear is coming to the rescue. The testimonials are promising, but really I hope having protection will just chase the rain away entirely. Soccer is more fun in the sun.

My nemesis: negative pressure

2011-04-10T06:00:00.035-04:00

In January, Julia visited the audiologist. The appointment, as always, began with a tympanogram. The test showed negative pressure.

I'm no professional, but I've been to this particular specialist enough times to know that those humps are supposed to be over to the right hand side of the box. When they show up on the computer screen as left-side lumps, my heart sinks. We might as well just go home.

Negative pressure makes you have that stuffed up, underwater feeling. You can't hear as well. I'm annoyed by it with my normal hearing. For Julia, it's a real problem.

The audiologist told us in January that Julia should return when her ears are clear. She suggested May. Pumped full of EmergenC and having a really healthy winter, I thought perhaps we could get away with late April. I made an appointment for April 21st.

This week found Julia congested and snotty. I don't need a fancy machine to tell me her ears have negative pressure. I'll have to reschedule the next audiologist appointment.

The part that really upsets me is the length of time my nemesis, negative pressure, hangs around. The cold will be gone for six weeks before the pressure returns to normal. It makes appointment planning difficult. It makes communication more difficult.

The next appointment is set for early June. I'm hopeful there will be no new colds before then.

The Endeavor

2011-04-03T06:00:00.081-04:00

The winter issue of the American Society for Deaf Children's publication, The Endeavor, is now available. You might recognize the article on page 19. It originally appeared here in December of 2009.

When I started writing about Julia's hearing loss with a post about medical assistance in the summer of 2009, I thought our family had reached some kind of plateau. I finally felt that I was in a position to give advice or at least commiserate with other parents of deaf/hard of hearing children. With all of our back story told, I really thought I would run out of hearing aid stories.

No such luck.

The last visit to the audiologist showed that Julia's hearing progressed to an 80 dB loss. That was what struck me when I re-read the (Mis)Understanding Hearing Loss article. In December of 2009, it was 55 dB and I still mourned all of the things she couldn't hear.

Now I understand better, but still disagree with, those moms years ago that implied my child wasn't deaf enough to cause me any worry. 55dB does sound less impressive than 80dB. Still, there are great challenges for children with mild losses and unilateral losses. Parents of hard of hearing children shouldn't be in a deafness competition. I feel acutely aware of that as the decibels change but the day to day issues remain the same.

Looking back on all that I've written, I can see in black and white that dealing with hearing loss is a lifelong endeavor. It's not a major thing every day, but it's always on my mind. It will always be our thing. There's no danger of running out of thoughts that will make their way onto the blog.

Perhaps some of those thoughts will even make their way into The Endeavor. I do think my writing looks better in print.

More news from the ASDC

Professor Karen Munoz in the Department of Communicative Disorders at Utah State University is conducting a research study to find out more about parents experiences in getting hearing aids and when their infant or young child is diagnosed as deaf or hard of hearing.

Corbett to cut PA funding for newborn hearing screenings

2011-03-28T06:00:00.048-04:00

Tom Corbett's budget has been making lots of news here in Pennsylvania. The big ticket items have been getting a lot of coverage. Cuts to education and Medicare aren't going over so well. Then yesterday, I found out that the proposed budget will eliminate funding for the Newborn Hearing Screening program.

I've written in passing about Pennsylvania's newborn hearing screening. Julia, born in 2005, was screened as part of the program. She passed that screening and was found to have a moderate hearing loss as a toddler. I was hopeful that rather than can the whole program, we might extend it to include another screening around age 3.

Now I'll be writing a letter just to save the part of the program that's already been worked out.

I hope my Pennsylvania readers will join me in contacting our state lawmakers. PA currently tracks and follows up with new parents after the initial screening. They are now doing important work to make sure kids with hearing loss are put into the early intervention system.

Without state funding, the effort to identify hearing loss in infants will be a disjointed mess.

Please visit this site to send a message to the state legislature.

Parent Profile: Mimi

2011-03-27T06:00:00.016-04:00

This month we get to meet Mimi of Woven by Words. Mimi's son was diagnosed in 2009 with hearing loss.

Mimi's Story

My son, Doodle (7 1/2), has had various health issues from birth. Nothing outrageous or out of the ordinary, just out of the ordinary for our family. When he was born he was slightly tongue tied, medically known as Ankyloglossia. His doctor had no concerns about it and Doodle had no issues nursing. When he was 1 1/2 we found out he had an umbilical hernia. I think he was about 3 when he had surgery for the hernia and while he was under they fixed his tongue tie.

A couple of years later Doodle had numerous strep throats and it was decided by our ENT that he needed to have his tonsils and adnoids taken out. The recovery from the surgery took a bit longer than we expected, in that he was very nasally. He talked through his nose for about 3-4 months and it gradually went away.

In 2009 he failed his hearing test at school. He was sent to the ENT who set us up with the audiologist. She was spectacular, the audiologist. Doodle just thought she was awesome. We did a few different testings and they determinded he had hearing loss in his left ear. Not enough to make the matter urgent and she left the decision up to me as to whether we should get him a hearing aid.

I decided we should go for it because I want my kids to have every opportunity to succeed and if he was going to miss something at school because he couldn't hear, that wasn't acceptable to me. We went to the manufacturer's website so he could choose the color of hearing aid and he went with the hair color he has, which is blonde. He has a Latitude 8 Mode II from Unitron. I wish they would have some cool designs for the hearing aids so the kids could be "cool" with them.

I wasn't sure how Doodle would do with the hearing aid, but I wasn't too concerned. He's pretty self-confident, but you never know how a child will react to possibly being seen as "different". I didn't want to make him self conscious in a negative way about it so I made sure to tell people to tell him how "rockin'" his hearing aid is, to use the word "cool", etc. I wanted to build him up and help him feel comfortable with wearing it. Let me just say, we have some great people in our lives!

Doodle thought it would be so cool to have a hearing aid because in the movie Up the old man was able to turn his hearing aid off and not have to listen to anyone around him. It was tough to break it to him that his hearing aid wasn't coming with an "off" button. Let's just say, he was bummed.

He's still adjusting to the comprehension that he will always have a hearing aid. A couple months after he had it he wanted to "test" himself to see if he'd gotten all better. He took his hesaring aid out and ran into another room asking me to talk so he could hear me. I was talking and he couldn't hear me. I felt sad for him, because I didn't realize he didn't understand that this was a "forever" thing.

School is going great. He has been a great student and I'm sure the hearing aid will only benefit him as he grows up. He hasn't needed any classroom help or assistance. He sits in the back of the room because the hearing aid is doing his job, which allows him to do his...be a studious student!

The only thing I have to say to other parents is, this doesn't have to be seen as negative. We all have "something" in our lives. Sure, my son hasn't lost complete hearing so it's not the same as someone who has profound hearing loss. Would I feel sorry for my son? Absolutely, but it's not the end of the world. They have to adjust and we have to adjust. It's so imperative for us to have a positive outlook so that our kids pick up on it. I also say we're our kids biggest advocate! I called the school as soon as I found out Doodle would be getting a hearing aid. The school counselor was willing to go into the classroom and talk about hearing loss or about bullying in general (not focusing on my son in that regard). The principal was willing to help out with any help we might need with this transition.

If you don't understand something, need more information, or have any concerns, ask questions! Go see the ENT or audiologist...again. This is your child's health and you are in charge of it. Do you feel like you need a second opinion or your child might need some different testing? Then I say go for it. There's nothing wrong with a second opinion. Do research. Get in touch with hearing aid companies. Try to connect with people who have gone through something similar. Remember, you aren't alone in this journey.

Thank you so much for highlighting our experience in this journey of hearing loss! You can find me at Woven by Words.

We are our child's biggest advocate. Thanks so much for sharing your story, Mimi!

What?

2011-03-13T06:00:00.023-04:00

Julia has developed a "what" reflex. Whether or not she hears, even if she understands, she asks "what?"

"Julia, please clear the table. Dinner is almost ready."
"What?"

Silence.

"You want me to clean up for dinner?"
"Yes," I reply, attempting to conceal a deep sigh. Each "what" drains a little more of my life force away.

I've asked her to clarify whether she's heard me. I told her I need something more than "what." I'd love to know if there's something going on that needs to be reported to the audiologist.

"Can you repeat that?" "Excuse me, I didn't hear you." Or just answering a question/following directions. All of these would be wonderful options. My latest attempt at ridding our house of useless reflex responses is to say nothing when she makes that infernal query.

Still, every day it's "what, what, WHAT?"

At least she doesn't say, "huh?"

***A while back I started a Parent Forum here at BTaC. If you have experience with hearing loss (parenting, personal or professional experience), please hop over and exchange some ideas. I'd love to know how other people figure out if their child is not hearing or not paying attention or just demonstrating a bad habit.***

Perusing a different kind of catalog

2011-03-06T06:00:00.055-05:00

Almost three years ago, Tim and I chose flesh colored hearing aids and clear ear molds for our newly diagnosed daughter. I wanted the aids to blend in to her golden brown hair. As if not seeing them would make the hearing loss disappear.

It was really hard to see her hearing aids. I tried taking pictures of her on the first day as she danced and signed "loud." You can't really tell she's wearing them in the pictures. I had to walk up to her and lift her hair to make sure she was still wearing them. There was no chance of slyly figuring out from across the room if my preschooler had tossed the expensive equipment to the dog.

Over time, we got more daring. There were slightly pink ear molds then pink with sparkles. Then Julia started choosing on her own.

Julia loves getting new molds. She got purple, hot pink and white tie dyed looking ones a while back. Most recently she chose rainbow stripes.

The audiologist has colorful brochures with lots of crazy color combinations. These color choices aren't enough. Julia knows now, as a big kindergartener, that other kids have fancy hearing aids as well. A person can have animal prints or bright metallic colors. I pulled up Phonak's web site one day so she could page through the options.

Julia will get new hearing aids in about two years. She's all about advanced planning.

Hearing loss has brought us a lot of new catalogs to consider. I can thank the school audiologist for suggesting an alarm clock that shakes the bed. On any given day Julia might be perusing the American Girl catalog or another filled with ear gear and tube riders.

There's a lot of stuff to make hearing aids an expression of a little girl's personality. I think some kids are even jealous of those rainbow ear molds. Wait till they see the cool alarm clock.

Hearing Loss Profile: Melissa

2011-02-27T06:00:00.003-05:00

Today we get to meet Melissa. Please visit her blog, A Journey with a Cochlear Implant.

Lissa's Story

Hello, my name is Melissa but I'm also known as Lissa. I grew up learning to communicate through spoken language, but of course this does not mean I cannot sign. I can- I love to sign with deaf friends (those who use BSL as their primary form of communication) and my mum signs to me in the mornings when I do not have my implant on.

I was diagnosed at 9 months of age with severe-profound bilateral sensioneural hearing loss. Doctors and my parents think my hearing loss is due to prematurity and being given medication. I was given a group of antibiotics known as aminoglycosides- without them I would not be here today. I was born as one of triplet girls (one did not survive) at 28 weeks gestation.

My parents were warned to watch us for any developing disabilities over time. I was aided with my first body worn hearing aids at the age of 1 year old. My mum has always told me that I was not one of those kids who hated their hearing aids and tried to get rid of them at every oppurtunity. I LOVED my hearing aids!

I got my first pair of BTE's (behind the ear aids) at the age of 5. I attended a school for deaf children from 3-11 years old.

My hearing loss progressed to profound at most frequencies around the age of nine years old, so I went forward and went through the assessment process for a CI. In October 2000, at the age of 10 1/2 years old, I was implanted in Manchester with a Nucleus.

I attended a local-ish comprehensive school from 11-16 years, I was mainstreamed for the first time in ALL classes although with a Communication Support Worker (CSW). Having these CSW's in school and college has provided me with the ability to advocate for myself and manage real situations.

I am still a bimodal user, as I wear both my processor (in the left ear) and my hearing aid in my right. It works for me, since both (especially with the use of my CI) helps me to hear.

My advice to parents of young children is follow what you feel is right for your child. Any method of communication, amplification etc will lead to your child being successful. A deaf child can be anything that they want to be. You're the parent and whatever you feel is right, do it. Do not let other people sway you but let them offer you guidance, as they cannot chose for you.

During my schooling years, I have had many types of equipment to help me, in primary and secondary I have gone through many FM systems and I think my favourite one was the FM Genie, it was more modern and small. But nowadays I'm sure they are a lot smaller!!

Being the only deaf member of the family, can sometimes be frustrating but with requests and giving my family ways of to make life easier for me, they can change!

I am now working a day care nursery with children aged 0-5 years, communication is quite easy but if I don't understand I ask to repeat, but it is not a major problem.

Thanks Lissa! It is important as a hearing parent that I understand the frustration caused by being the only hard of hearing person in the family. I'm glad your family was able to adapt. There's hope for us yet!

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.

The tinge

2011-02-20T06:00:00.065-05:00

tinge –noun. a slight admixture, as of some qualifying property or characteristic; trace; smattering: a tinge of garlic; a tinge of anger.

In my case, a tinge of why us?

I get this hint of a feeling occasionally. It's nothing like the initial blow of finding Julia's hearing loss. That was grief. The grief was compounded by guilt. After all, it could be worse. I grieved for three weeks and then felt angry at myself for still feeling grief. I dealt with grief, anger, and guilt for the balance of the first year.

If only I'd known then that three years later I'd still be feeling the tinge. That very faint, pathetic feeling when I wonder why this happened to us.

Why us? My mind whispers when she's up in the night gagging and I have to run for one of her hearing aids to communicate with her.

Why us? I murmur when she rips out the right hearing aid because "it's not working" only have me troubleshoot both and discover that it's actually the left one that's blocked. (She twisted the tubing 360° when she put it in.)

Why us? I groan as a less than two-year-old dancer girl fixates on the pretty rainbow ear molds in my daughter's ears and investigates them with a stiff poke.

I'm not thrilled to still be feeling it, but I let myself have a moment now. There's no point in feeling guilty. This is our thing. Other people have more difficult challenges, but that doesn't take away my right to feel occasionally dismayed at our occasional hardships.

It is after all, a "slight smattering," perhaps one day, the tinge won't even exist.

Future IEP notes

2011-02-13T06:00:00.048-05:00

Working as a special education paraprofessional in our local school district has given me lots of exposure to Julia's future educational environment. I've worked in different classrooms in first through fifth grade. I've spent time in the middle school. Currently, I'm doing a stint in high school.

The grade school teachers ask for students to get up and answer math questions. The little children give correct answers while facing the white board in barely audible voices. This is going to be a problem.

An assembly turned boy versus girl shouting match got really loud. Several special needs kids were pulled into the hallway to escape the sound of competitive screaming/shrieking. This is going to be a problem.

High school students are required to swim as part of gym class. I learned that kids with an IEP can opt out of this requirement. Good to know.

So, I have a page in my trusty notebook dedicated to "ideas for future IEPs." For next year we'll talk about tennis balls on chair legs, the sound field and personal FM. I'll inquire about getting a Mic for those student teachers to help clarify their shy white board mumblings. I'll ask that Julia have the option to remove herself from any assemblage of shrieking kids or at least have someone knowledgeable enough to remind her of her hearing aid volume control.

I feel informed and prepared from my time spent subbing. Come IEP time I'll be prepared with my notebook. There's stuff in there for years to come.

The Hearing Restoration Initiative

2011-02-06T06:00:00.057-05:00

Julia's certified teacher of the deaf has been teaching her all the parts of the ear. Julia can draw a lovely cochlea. One day she explained the function of the Eustachian tube. She knows that her hearing loss is most likely due to missing hair cells on her cochlea. Her knowledge about ears is impressive.

We don't know what caused her to lose hair cells. We'd all love to have them back.

The Deafness Research Foundation (DRF) is launching a fundraising campaign to raise money and awareness for hair cell regeneration. They're calling it the Hearing Restoration Initiative.

I first learned of this research at the AG Bell convention last summer. A research symposium presenter went into detail about the use of mouse cochlea to try to get mammal ears to behave like chickens. Chickens, I learned, regrow hair cells and repair their hearing spontaneously. In a month, a deafened chicken can hear again. Mammals can't do that.

With "proper funding" DRF thinks deafness could be cured in ten years.

Deafness could be cured. I like the sound of that.

Parent Profile: Kristen

2011-01-30T06:00:00.041-05:00

This month's parent, Kristen, is the mother of four, ages 13, 11, 8, and 5. Eleven-year-old Vincent is hard of hearing. Kristen writes a lovely blog called Mothering Mayhem where she records memories of time spent with her children.

Kristen's Story

My son was born in 1999, right after the newborn screening program was started in Virginia hospitals. At birth, one of my son's ears failed the newborn hearing screening and the other one passed. Because we had no family history of hearing loss, the hospital suggested that the failure was most likely due to fluid in his ear from the birth process.

Because of the relaxed attitude by the doctors, who brushed off the hearing test results, we weren't concerned about his ear failing the screening. We were told that even if he did have hearing loss in that one ear, the only considerations he would receive would be preferential seating in school.

I took our son to an audiologist at Children's Hospital many times for hearing tests, but he was a colicky baby and a poor sleeper. He always awoke before the end of the test.

At twelve months old, in a last ditch attempt to get conclusive test results, he was sedated for a BAER test at Children's Hospital in Washington, DC. We were shocked when the test results showed a severe mixed conductive hearing loss in both ears.

At 15 months old, Vincent started wearing his first pair of hearing aids. He loved them right from the start. He never pulled them out in frustration.

When our son was younger, my husband and I were so worried about his future. We stressed and fought with the school for services. We went to classes and seminars. We basically freaked out that his classrooms weren't acoustically perfect.

That was a very bleak time.

We spent so much energy fighting. Life improved after we decided to focus on giving Vincent everything he needed ourselves. He still went to school, but we would do homework together everyday. I could make sure he knew what he was doing and didn't get behind.

Vincent's hearing loss is progressive. For years, his hearing worsened quite a bit. Sometimes there would be a slight improvement, but the overall trend was always downward. After consulting many specialists, we were told that the fluctuations were not a good sign. Vincent would become totally deaf eventually.

For a while I was overwhelmingly sad about his prognosis. I wondered if it would have been easier for him to have been born deaf, rather than going through another period of adjustment (most likely) in his teens.

Vincent has had two ear surgeries in an attempt to stop the progression. The surgeries appear to have stabilized his hearing for the time being, but the future is unclear.

As two hearing parents, we chose to aid our son because his loss still allowed the use of hearing aids and we thought communicating via speech would make his life easier. We made the decision that we thought was right for him. Had we known then that he would eventually lose all of his hearing, we probably would have chosen an alternate route. If his hearing does worsen, now that he is older, he will have a choice about cochlear implants, sign language, or both.

Thanks for telling your story here, Kristen! There are so many different kinds of hearing loss and many ways to come to a diagnosis. I wish you strength moving forward as you continue to advocate for Vincent's changing needs.

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.

Making an equipment snafu a bright spot in parenting

2011-01-23T06:00:00.038-05:00

The school has me on speed dial. They call me to work there. They call with horrible news. They call when I forget to put on the FM boots.

On Tuesday, they called because through some strange series of events Julia lost an FM receiver on the floor of the classroom.

We have our very own FM system and receivers at home. The teacher wanted me to bring one of ours to the school so they could go on with their day. They were already operating on an ice storm induced two hour delay schedule.

In the six minutes it took to get to the school, I had a really bright idea. Julia has been having a difficult winter with her hearing aids. She's been complaining that they hurt her. One day she came home with a note from the hearing teacher. "FYI- Julia's ear was bleeding today," it said.

This is all because her ear canals are very dry. We've been applying oto ease, a hearing aid lubricant, in the morning in an attempt to moisturize her skin. It helps a little.

We hypothesized that all of this might go better if she didn't have to take her hearing aids out at least twice every school day. The powers that be insist that the FM receivers must stay at school. Julia has to take her aids out to put the receivers on each morning and take them off each afternoon.

My new bright idea is to send her back and forth already wearing our receivers from home. The school provided receivers can stay at school. In fact, one of them is busy hiding somewhere on the floor right now*.

Why didn't I think of this sooner?

*The receiver was located later in the day. We're still going to try using the equipment from home. Hopefully, her ears will heal if the aids are in and out less.

The latest hearing test

2011-01-16T06:00:00.042-05:00

By the time we headed to our usual audiologist for tests to confirm the additional loss found at last month's ENT appointment, Julia was sneezing and sniffling.

In spite of being pretty congested, the tympanogram revealed only slight negative pressure. That means that her hear drums were still moving. Good news.

In the booth, Julia struggled with a word recognition task. I sat behind her and listened to her garbled attempts at repeating the audiologist's list of words. As usual, I tried to piece together Julia's behavior and the audiologist's face to guess at how it was going.

I still can't figure it out.

After air and bone conduction testing, the audiologist thinks there is some conductive component to Julia's hearing loss. The bone conduction test came out the same as our old tests, about a 65 dB loss. Through the air it was the same as December's test, down around 80 dBs. Julia's hearing aids have been adjusted.

We have to go back in May. Hopefully, then her congestion will be cleared up. If her slushy speech doesn't right itself in a timely fashion, we'll be going back to the ENT or pediatrician. Sinuses and adenoids might be making her head stuffy.

Though it's good to think that this isn't further progression of the sensorineural hearing loss, she's still hearing worse today than she was six months ago. As with all things related to hearing loss, it seems there's just more we don't know. The only thing that's certain is that we're looking forward to spring.

Cue Camp as an incentive

2011-01-09T06:00:00.036-05:00

Cue Camp Friendship is happening this June in Maryland. I am determined to help Julia understand cued speech before swimming pool season. Cue camp would be a good opportunity to help Tim and I gain speed and teach Julia. It's getting harder to communicate without hearing aids. We have to do something.

Little Wonder doesn't want to go.

Last summer's AG Bell Convention is burned into dear Julia's memory. It turns out she didn't like the kid program. When I mentioned going to SeaWorld next time we're in Orlando, she said, "I'm not going on that bus again!" In her mind SeaWorld is only accessible with a bus load of strangers (day care workers and other children in the AG Bell kid program). I didn't realize it was going to traumatize her!

After explaining that Mommy and Daddy would go with her, she's on board for any hypothetical visit to an Orlando attraction.

Separating from us for any portion of a vacation is getting a big thumb's down, so I have attempted to make a bargain. If we can learn to cue enough to get by for a day at the beach by May, we won't go to Cue Camp. If we don't learn it, we'll give up three days of our vacation and some of our togetherness.

All parties have agreed to these terms. We haven't practiced even once. I'm keeping the Cue Camp registration form close by!

Taking it one decibel at a time

2011-01-02T06:00:00.050-05:00

Late last month, Tim insisted that I take Julia somewhere to figure out what's going on with her hearing. She's been a bit off lately, mishearing and dropping some sounds she'd previously conquered. I made lots of excuses. She's tired in the evenings. She's congested. She'll do better after cold and flu season is over.

The Dad wasn't interested in excuses, so I emailed the audiologist. We determined it would be best to make an appointment with the ENT. Dr. C. could check for fluid. They can do a hearing test at the same time to determine the impact of the congestion/fluid.

After almost two hours Dr. C. and a different audiologist than our regular one determined that there is no fluid in Julia's ears. There's no ear wax. Their testing revealed more hearing lost.

The black x's and o's are the results from the most recent test. Those green ones are where we started when Julia's hearing loss was first discovered. It started as a 55 dB loss. Now there are marks at the 80 dB line.

Honestly, I've still been waiting for the last 15 dBs lost to come back. I figure there's always a chance of a bad test or some incalculable stuffiness that caused things to be a bit different. It hasn't come back.

Dr. C. was genuinely apologetic that there was no wax ball he could clear. I made an appointment with our regular audiologist (January 12th) to have another test. If these results are confirmed, Julia's hearing aids will be reprogrammed and I'll try to program my mind to say "severe hearing loss" rather than "moderate."

Until the next test, there's still hope. This test was at the end of a long day. Maybe she was just tired.

Hearing Loss Profile: Liz

2010-12-26T06:00:00.000-05:00

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 Editio n.

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.

The new language experience

2010-12-19T06:00:00.052-05:00

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.

Fly on the wall with feelings

2010-12-12T06:00:00.002-05:00

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.

Hearing Loss Profile: Lucy

2010-11-28T06:00:00.001-05:00

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.

Staying in the elementary school loop

2010-11-21T06:00:00.001-05:00

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.

Still surprised by (not) hearing

2010-11-07T06:00:00.071-05:00

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.

Hearing Loss Profile: Danielle

2010-10-31T06:00:00.010-04:00

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.

The big kid "magic ears" play group

2010-10-24T06:00:00.041-04:00

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.

The hearing loss excuse

2010-10-17T06:00:00.045-04:00

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.

Hearing loss cause: unknown

2010-10-10T06:00:00.061-04:00

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.

Living with hearing loss: Lesley

2010-09-26T06:00:00.035-04:00

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.

A test of the emergency response system

2010-09-19T06:00:00.003-04:00

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.

Kindergarten accommodations

2010-09-12T06:00:00.052-04:00

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!

Cuing until I can't spell straight

2010-09-05T06:00:00.037-04:00

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 Association. Cue Camps and instructors are available to help you learn. Click "find an instructor" under the "resources" tab.

Parent Profile: Rebecca

2010-08-29T06:00:00.035-04:00

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.

A celebrity sighting or just a trip to the ENT?

2010-08-22T06:00:00.045-04:00

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.

Stress and the hard of hearing child

2010-08-15T06:00:00.083-04:00

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?

AG Bell Session: Working Memory

2010-08-01T06:00:00.047-04:00

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.

The evolution of ear molds

2010-07-25T06:00:00.043-04:00

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.

AG Bell Session: Humor

2010-07-18T06:00:00.059-04:00

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.

Slow signers

2010-07-11T06:00:00.003-04:00

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.

She heard that!

2010-07-04T06:00:00.041-04:00

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.

Was it really life changing?

2010-06-28T06:00:00.059-04:00

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.

Catching lightning bugs before hearing aids

2010-06-27T06:00:00.002-04:00

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.

Expectations for AG Bell's Biennial Convention

2010-06-20T06:00:00.036-04:00

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?

The first big girl booth test

2010-06-13T06:00:00.042-04:00

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.

An implantable hearing aid

2010-06-06T06:00:00.002-04:00

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.

Preventing swimmer's ear

2010-05-30T06:00:00.074-04:00

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.

Childhood hearing loss support group

2010-05-23T06:00:00.068-04:00

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.

Mommy, I'm different....

2010-05-16T06:00:00.001-04:00

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!"

Hide and seek with hearing aids

2010-05-09T06:00:00.062-04:00

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.

Motivating hearing aid independence

2010-05-02T06:00:00.023-04:00

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.

Reflecting on the months before magic ears

2010-04-25T06:00:00.031-04:00

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.

Hearing age: 2 years

2010-04-23T06:00:00.042-04:00

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.

Watching TV at a reasonable level

2010-04-18T06:00:00.027-04:00

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!

Self advocacy amusements

2010-04-11T06:00:00.020-04:00

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!

The Art of Reading Aloud

2010-04-04T06:07:00.067-04:00

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.

Classroom strategies for mild/moderate hearing loss

2010-03-28T06:14:00.043-04:00

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.

I won sponsorship from Prilosec OTC!

2010-03-23T05:47:00.001-04:00

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!

Part Three: Paying for Hearing Aids

2010-03-21T06:09:00.003-04:00

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:

AUDIENT Alliance for Accessible Hearing Care

The AUDIENT Alliance for Accessible Hearing Care Program is designed for individuals whose income is above the government's established poverty levels, but still find it difficult to afford quality hearing care.

Hear Now Program

The Hear Now Program of the Starkey Hearing Foundation has provided over 47,247 hearing aids to 27,500 individuals since 1999. Hear Now is a national program providing assistance, to those permanently living inthe US, to acquire hearing aids through an application process. All applicants must meet the program's financial criteria, complete the application process and be approved for hearing aids. Hear Now works with licensed practitioners, in the applicant's area. For more information please call the Hear Now program at 1-800-328-8602 ext. 2358 or visit their website. The Starkey Hearing Foundation also has a Hearing Angel Program.

Listen Up

Sources of hearing aid and cochlear implant funding.

Miracle Ear Children's Foundation

Miracle-Ear Children's Foundation provides free hearing aids and services to children from low-income families.

Oticon Pediatrics

Oticon Pediatrics offers a loaner bank program. The program will provide hearing aids for children, birth to three, who are in need of immediate amplification when amplification is not readily available.

The HIKE Fund

The purpose of the Fund is to provide hearing devices for children with hearing impairments between the ages of newborn and twenty years whose parents are unable to meet this special need financially.

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.

Silent Mommy

2010-03-19T05:51:00.030-04:00

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.

Part Two: Hearing Aid Stigma

2010-03-14T06:37:00.002-04:00

Today's post is the second of a three part 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. Last Sunday's post, the first of the series, covered denial.

According to the research paper, "about a third of parents" said their own embarrassment or their child's embarrassment kept them from pursuing hearing aids for their child. Written responses from parents articulated the feeling that hearing aids are "really only for old people" and hearing aids are "ugly" and "too noticeable".

There is a stigma associated with wearing hearing aids. People that notice the aids assume my daughter is completely deaf. I've witnessed well meaning adults that slow their speech or dumb things down when they're presented with a kid wearing hearing aids. These misunderstandings are easy to remedy. A person only needs to talk to Julia for a few minutes to realize she is neither deaf nor slow.

I know that there might be teasing because of Julia's hearing aids. There might also be teasing because she has curly hair or likes to wear dresses. Kids pick on other kids. All we can do as parents is to give our children strategies to deal with criticism. It's not a great strategy to ignore an educationally handicapping disability so bullies have one less thing to tease about.

A better response is to educate your family and your child's classmates about hearing aids. Give your child the confidence to explain their hearing instruments in a matter-of-fact way. Let them know that they are in no way limited by their amplification.

Remember that doing nothing about even a mild hearing loss will adversely affect your child's performance in school. That has its own stigma to worry about.

Part One: Hearing Loss Denial

2010-03-07T06:20:00.084-05:00

Today's post is the first in a three part 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 study seeks to shed light on why 1.2 million dependent children in the United States have hearing loss but do not use amplification. A survey was sent out to parents of hearing impaired children and the research paper highlighted their responses. It's a worthwhile read for anyone interested in advocacy for young children with hearing loss.

The most popular reason for not aiding a child (in this study) is denial. Especially parents faced with a mild hearing loss might feel that the problem is not that bad. In many cases, this feeling is echoed by professionals. Audiologists, family physicians, and pediatricians were reported to advise parents that hearing aids were not needed or wouldn't work for their child.

These same parents reported that their children experience a host of problems including speech delays. These kids turn up the TV to levels that are uncomfortable to other members of the family. They can't hear normal speech. The experts writing this study concluded "a hearing loss below 35 dB in the better ear is considered 'mild'. Yet we know that, for a child in a classroom, this is worse than stuffing their fingers in their ears."

Even with a higher degree of hearing loss, I have experienced denial. I know that Julia can hear without her aids. She was even learning to talk. I wondered before her ABR, is she just ignoring us? It's easy to think that a child can hear when they want to or when it's important. It's important to have the perspective of professionals to help decide it hearing aids are necessary.

In many parts of the country, the quality of medical care varies. Here in Pittsburgh we have pediatric audiologists and the best in ENTs and pediatricians. Even with what I consider to be a wealth of great medical resources, I've already ditched a pediatrician because of my child's hearing loss. I was asked on at least four occasions by this pediatrician, "is that a cochlear implant?" of my child's hearing aids. I thought it was strange that she wouldn't know the first time. But on each subsequent visit, after I told her, she still didn't know. I changed doctors and eventually switched practices because the doctors were so ill informed about her condition.

Doctors are just people. They might not know much about pediatric hearing loss. An audiologist that works almost exclusively with adults is not going to give you the kind of insight one trained to work with kids will. They may not even have the smaller sizes of inserts and proper equipment. As a parent of a child with any level of hearing loss, you have to advocate for your child. If their vision was blurry you would get them eyeglasses. There's no reason to let them miss 50% of conversational speech if hearing aids could help (this would be caused by a mild hearing loss with a pure tone average of 35 dB).

My experience is with only one child with moderate-to-severe hearing loss. I can't insist that every child with hearing loss needs hearing aids, but many do and they aren't getting them. At the very least, be sure you seek out professionals trained in diagnosing pediatric hearing problems so you can achieve the best outcome for your child.

Here are some other articles to consider about "minimal" hearing loss: Even Minimal, Undetected Hearing Loss Hurts Academic Performance and Mild and Unilateral Hearing Loss. Next Sunday's post will cover the stigma of hearing aids as a barrier to providing amplification for children.

This one's all about a turd

2010-03-05T06:06:00.049-05:00

After finishing up an IEP meeting, I asked Julia if she needed to go to the bathroom before we headed home. She thought that was a good idea. We headed off to the elementary school bathroom.

We were in the fifth grade wing of the building. A few 12-year-old girls were in and out during our time in the toilet. They got to hear a wonderful conversation.

"A turd just fell outta my bum, mama. A turd!"
"Shouldn't you wipe then?" I ask.
"No."

There was some more back and forth on this issue. She was insistent that a bodily function had just occurred but lives in some alternate reality where no further action is required. I was aware we had an audience and wanted to go home. I let it slide and mused that my mother of the year certificate is probably in the mail as we walked back to the meeting room.

When we get back, Julia's hearing impaired teacher asks, "Did you find the bathroom Julia?"

There is no response. The child is clearly tired.

"Are you just pooped?" is her next question.
My daughter exclaimed, "a little turd fell out!"

At this point the teacher gets down to Julia's level. I am mortified that this is the moment when another adult has to explain to my child that it is inappropriate to announce what just happened in the bathroom in such detail.

"It's an expression," the teacher tells her. "Pooped means you feel tired!"

It may not have been the best time to introduce that particular expression. "Are you pooped" and "did you poop" are rather close phrases. Combined with the proximity to an actual bathroom trip this is probably what motivated the unabashed disclosure. Or it could be that Julia was just really hung up on that turd.

Apparently the teacher and another attendee of our IEP meeting had just been having some sort of conversation about the difficulties children with hearing loss face. "This is a perfect example," the teacher exclaimed as I turned fifteen shades of red. "This is perfect for your blog!"

Oh the things I go through for this blog!

More hearing lost

2010-02-28T06:09:00.107-05:00

After a six week stint of very little activity, Julia and I had a big Thursday. She had magic ear school and an audiologist appointment. Then in the evening I had to go to a transitional meeting to switch her hearing support services from preschool to kindergarten. It was an epic day in the context of our typical home-bound winter schedule.

It goes without saying that I had contracted a cold earlier in the week. I do, in fact, get sick each time I leave my house. I was buzzing on Mucinex with ironic drowsiness mixed in.

Mentally prepared for a quick audiologist appointment where we filled out a form and talked a little, I was already surprised that we were having a hearing test in the booth. The appointment was to order an FM system for our home since the county will take theirs back this summer. I hadn't prepared Julia to do work. I got the stink eye.

An attempt was made at getting Julia to wear the ear insert do-hickeys that she hates. She got her favored headphones back in pretty short order. After each word the audiologist wanted her to identify she turned to me and said, "these are hurting me!" I can't imagine how they hurt her, but the audiologist went back to the headphones. Even imaginary plight can be distracting from sound identification tasks.

Her picture identification is usually strong and steady. I've watched her do this test numerous times and she's a pro. The audiologist says a word, Julia points to the picture, they move on. This day, it was WHAT? HUH? WHAT IS SHE SAYING?

Then it was time for the test where Julia is required to feed a toy animal when she hears a sound. It was exciting this time because a new bunny needed fed realistic looking carrots. Previous tests have used cardboard cutout foods. Julia kept turning around and asking me if I heard the sound. "I didn't hear the sound. Did you hear the sound?"

I didn't hear the sound. It is not played for the benefit of the audience. There was no way to communicate this to my child when she wasn't wearing hearing aids and had big headphones over her ears. I did some strange pantomime and willed her to finish the test.

We went in to get an FM and came out feeling pretty certain Julia has lost 10-15 dB of hearing across the three middle frequencies. This means we're looking at a 70 dB loss in the middle frequencies. Prior to this appointment we were 50-55 dB at all frequencies. Her hearing aids were reprogrammed.

By the next day, Julia had the cold. Her hearing was still very poor even with the added amplification. And even though she'd had a tympanogram and her ears were clear the previous day, I still can't let go of those 10 dB. I'm still hoping they'll come back in the spring. I'm still hoping it's ear wax. I can't let go of the denial even though this isn't the first test that has revealed this extra loss.

By the next week our lives returned to normal. Her hearing seems okay. I'm now waiting on the report to see if it will say "fluctuating" or "progressive" or maybe just "severe". None are words I wanted to see.

Other posts on childhood hearing can be found on the hearing loss page.

Hearing Aid Tax Credit

2010-02-21T06:21:00.097-05:00

When deciding whether to aid a young child with hearing loss, cost is surely a factor for parents. After years of advocacy by groups such as The Alexander Graham Bell Association for the Deaf and Hard of Hearing, the House of Representatives is moving closer to enacting the Hearing Aid Tax Credit.

This bill would provide a tax credit of $500 per hearing aid purchased for dependent children. The tax credit would also be available for adults over age 55.

The Better Hearing Institute includes a link to write your congressional leaders in support of this tax credit. My letter will include a request that they add tax credits for younger adults. Hearing aids should be made affordable at any age. Young adults should not be left out of this benefit until they turn 55.

AG Bell's advocacy page also listed a call to action issued by the American Speech-Language-Hearing Association:
Urge Congress to Include Pediatric Hearing Benefit in Health Care Reform
This week, the American Speech-Language-Hearing Association (ASHA) issued a call to action to help ensure that a comprehensive pediatric hearing benefit is preserved in the U.S. House of Representatives version of health care reform and included in the Senate version. Currently, the House's health care reform package (H.R. 3200) provides coverage of infant and child hearing services, equipment and supplies for children up to 21 years of age. However, the Senate has yet to name the same level of pediatric hearing services in its version of health care reform.

Write your congressman because no parent should have to struggle to pay for their child's hearing aids!

Listening checks and keeping ear molds clean

2010-02-14T06:49:00.072-05:00

Julia finished up January with a nasty head cold. Her hearing typically takes a dive when she's congested. We went to the doctor figuring she had an ear infection. There wasn't even fluid in her ears, but her left ear had a large ball of wax in the canal. The doctor irrigated and washed the wax ball away. Now she is saying that her left ear hurts. I'm having fits. Did they scratch her ear digging around in there? Is she getting an outer ear infection?

She gave me a near anxiety attack a week later when she suddenly couldn't hear at all.

I figured her batteries had died. I was painting the entry way and she was in the living room watching Pinocchio. Perhaps she neglected to tell me the hearing aids were beeping. We couldn't communicate to figure out any of this. She couldn't hear a thing.

I get the batteries changed and ask her, "is that better?"
She tells me, "It sounds funny mama."
"Sounds funny quiet or sounds funny bad or what?" I'm getting wound up now.
"Quiet," she answers.

I spin her around and let her know I'm going to check her hearing. I administer a LING six sound test. The ling sounds are: aaa, eee, ooo, sss, sh, mmm. She repeated the first three only.

I took the right hearing aid and headed upstairs to where I keep the stethoscope. I attached the listening device and said the LING sounds again. It was working. I looked at it and saw that some ear wax was in the opening of the ear mold. I took off the ear mold and hooked the stethoscope directly to the hearing aid. It was much louder. So they just need cleaned.

I ran the ear mold under warm water and then blew it out with the bulby thing that came in the hearing aid kit. I put it back in and Julia agrees it sounds better. I cleaned the left ear mold and put it back in. "The left one still sounds funny," she says.

I was at my wits end because she obviously still couldn't hear. I remembered we had her personal FM at home and we used it for the rest of the evening. It really saved my voice because without it I had to shout as though she wasn't even wearing her hearing aids.

I felt like crying. I had to keep reminding myself that it's just the cold. She's not getting deafer. It's just that stuffed up thing we all get and it takes weeks to go away. It had better be just the cold.

I'm very diligent about checking the hearing aids by saying the LING sounds and listening with the stethoscope every morning. Before I put the hearing aids in the drying jar at night I inspect them to see if they need cleaned. This winter she is an ear wax factory. I can't keep these things clean.

The readership of Big Teeth & Clouds ranges from parents with newly diagnosed kids to adult hearing aid wearers that have cared for hearing aids for their whole lives. To those seasoned hearing aid veterans I'm requesting that you please send along any tips you have on cleaning your ear molds. And, how do you know if they need cleaned? Is it by a visual inspection or do you wait until you hear a difference?

I've got one little pair of ears here giving me a rough time!

Literacy skills in children with hearing loss

2010-02-07T07:27:00.006-05:00

Julia and I are one month into our 100 easy lessons that will ultimately teach her to read. As we worked through the tasks in the very well planned lessons, I found a weakness in Julia's understanding of rhyming and wondered if this was in any way attributed to her hearing loss. She is really insistent on matching the beginnings of words rather than the end.

Over the past weeks we've made progress. She now remembers some rhyming words, but I don't think she's really getting it yet. A listing of skills that develop during kindergarten indicates rhyming is an emergent skill for the 5 to 6 year old set.

Even if that is the case, some skills take more time for my daughter to master. She has some difficulty with what I would term her auditory memory. Learning a new word or the name of a playmate she's just met takes a lot of practice and repetition. If she mishears a word and pronounces it improperly there can be a whole extra level added to the process. Last summer, Julia was insistent her new friend was Kayton. The name was Peyton. We ended up writing it on a note card so we could point to it when we tried to say the name. Peyton with a popper sound.

It was because of this concern and the debate over its cause that I picked up an old copy of The Volta Review published in the fall of 2008. I'd been saving it to read sometime and given its title: Emergent Literacy Skills During Early Childhood in Children With Hearing Loss: Strengths and Weaknesses; there's no time like the present.

The study involved 44 children age 4 to 6, all with more hearing loss than my daughter. Some of the children used cochlear implants and some had hearing aids. All had access to sound and had "some speech perception skills".

Various tests were used over the course of one school year to measure different literacy skills. In the rhyming test, the children had to pick the picture of the word that rhymed with the target word. The findings revealed that the hard of hearing kids "progressed on some phonological awareness skills (alliteration, blending, and elision) but not on others (rhyming, syllable segmentation)." This was over the course of the year long study.

The good news is that hard of hearing kids were on par with typically hearing children when it came to recognizing the letters of the alphabet and common written words.

The bad news is that vocabulary developed more slowly. This was attributed to typical children acquiring vocabulary incidentally. Hard of hearing children must have more direct instruction to remember new words.

The hard of hearing children "performed poorly, particularly on recognition of rhyming words." It goes on to say this task was the toughest for their study participants.

Their speculative conclusion as to why this might be so is that "in speech therapy, children are taught that 'sounding the same' refers to minimal pairs that share the same phonemes. This might result in confusion if children are told by adults that two words rhyme because they 'sound the same at the end'." They continued to hypothesis that often teachers (and parents) assume that a child is learning rhyming because nursery rhymes and Dr. Seuss are regularly being read.

The recommendation: more repetition and slower instruction.

This study supported my conclusion that rhyming is tougher for a hard of hearing child. We've been grouping words for years because they start with the bitey sound or the popcorn sound. Now I'm asking her to make this leap to listen to the end of the word. She can see that C-A-T and H-A-T rhyme on paper, but she doesn't yet hear it. Her ears need a bit more training.

The literacy skills presented in this study have renewed my campaign to build Julia's vocabulary. Now that she's saying words correctly we can learn off-the-wall things like "silo" and "turret". Also, our reading lessons are going really well! In just seventy more days, she'll be reading!

Above quotes are from:
Emergent Literacy Skills During Early Childhood in Children With Hearing Loss: Strengths and Weaknesses
Susan R. Easterbrooks; Ed.D.;
Amy R. Lederberg, Ph.D.;
Elizabeth M. Miller, M.Ed.:
Jessica P. Bergeron, M.Ed.;
and Carol McDonald Connor, Ph.D.

To aid or not to aid?

2010-01-31T06:39:00.003-05:00

At the time of Julia's diagnosis, I was thrilled to know that she would get hearing aids and intense speech therapy to overcome the speech and language delay caused by her hearing loss.

She wanted to hear and gave us little trouble wearing her hearing aids. The devices quickly became a part of daily routines. She frequently talks about how her "magic ears" help her because she can't hear well with her ears "plain".

To listen to her sing "Under the Sea", puts a lump in my throat every time. Her constant talking is something that wouldn't have happened without the aids. I know that assistive technology was the right thing for our family without any doubt.

Other families come to a different conclusion. From a similar background of two hearing parents can come a child with mild/moderate hearing loss that is unaided. This is something I struggle to understand. These are not kids that will learn sign language and enter into Deaf culture. They will have a "normal" childhood except for a diminished ability to hear. It seems they get no assistance, as if they're near sighted and can never wear eyeglasses.

The child could be very adverse to the hearing aids. I'm sure they're not comfortable. Some cultures have objections or shame. The financial burden is a prohibitive factor in some states, although cost is no excuse here in PA. If there are other reasons I'm missing, please let me know in the comments.

Readily available research supports consistent appropriate amplification. The Hearing Loss Resource Center reports:

Also, despite the terms "mild" and "moderate," these levels of hearing loss can have a significant impact on a child's ability to communicate. Research by Dr. Matkin and colleagues, for instance, indicates that "a child with an unaided "mild" hearing loss (pure tone average of 35db) misses 50% of conversational speech and lags two years behind his peers in language ability when he enters kindergarten. An unaided child with a 50 db loss (usually labeled moderate hearing loss) can miss 80% to 100% of the speech signal." (from Knowing the Ropes, 1996).

"Two years behind" and "misses 50% of conversational speech" had us expediting the arrival of our daughter's hearing aids any way we could.

We've been greatly rewarded as a family by the choice we made for our child. Instantly, I had a 3-year-old that would stop and turned around when I called her name. I realized she hadn't been misbehaving, she hadn't heard me. I believe behavioral problems would have increased as her time without amplification continued.

I cherish the conversations we have and I love her hearing aids. She loves hearing. Though I never thought of this as much of a choice, for us, aiding was the right one.

Developing a fire safety plan

2010-01-21T06:08:00.001-05:00

Julia has a multi-disciplinary evaluation every year as part of her services she receives from the county for her hearing loss. There are all kind of questions for her and me during a two hour visit from her certified teacher of the deaf. This time it revealed little in the way of deficiencies which is wonderful.

The teacher did surprise me by asking Julia what she should do in a fire. I think about what we'd do in a fire all of the time. I am a constant worrier. I've been thinking through how I would scoop up my baby and flee the house for the past four years.

I've talked about school fire drills with Julia. I've told her that the smoke alarm means that we should leave the house. We leave the house unless it goes off when mommy is cooking and I tell her it's a false alarm. She surely thinks that the annoying beeps happen only so I'll go and swat at the ceiling with a dish towel.

But we had to answer this question and we weren't prepared. My daughter, always innovative in her responses, replied that she would put out the fire. Then I corrected her by saying that she should find mommy. I took a moment and realized that we have no escape plan and we would all die of smoke inhalation.

We've moved into our first house where we can be in separate rooms and not even be heard to talk to one another. We're going to need to have a fire drill. I'm going to have to train her to leave the house and meet me at the mailbox. I can't rely on my own ability to find her and get her to safety.

It scares me that this snuck up on me so quickly. Here she is almost five. She could be that kid that goes and hides in a closet where we couldn't get to her in time. My worrying brain is in overdrive.

I have some work to do. We need to have one of those family meetings. We need to plan on getting ourselves out of the house and not stopping for Barbie dolls or even the poor dog. Hopefully, next time she's asked my Julia will know that she's not supposed to play hero firegirl.

Reading to supplement hearing

2010-01-17T06:16:00.006-05:00

Julia is on a break from preschool. She went to the first school for a whole year. We moved and she went to a second preschool for a half year. A third preschool was not something I was interested in doing. She gets a two hour hearing impaired play group once a week and has her dance classes.

Other than that it's the school of mommy.

Tim thought it would be great for an added method of communication if she could read. Julia thinks it would be great if she could read. I know how to read.

I purchased a reading program on Amazon. Teach Your Child to Read in 100 Easy Lessons requires a bit of reading on the part of the parent before beginning. The lessons are short and by building each day on the skills of the previous lesson, they are pretty easy.

Years of speech therapy are paying dividends in the little tasks of our reading lessons. Julia has been associating letters with sounds during intense speech therapy. She already knows a lot of sounds. She has the ability to listen to herself sounding out a word and easily connect it to the printed word. We're thrilled to have this strength that the past years of hard work have given our daughter.

The lessons have also shown a great weakness in rhyming. She simply isn't getting it. Perhaps the speech therapy has caused her to connect words by their beginning sounds. It's been a rough couple of weeks getting her to listen to the ending sounds.

I have no way of knowing whether our troubles are in any way related to hearing loss. I am glad that we've started early building reading skills. I look forward to supplementing her hearing with printed words. Someday she'll be able to watch her favorite movies with closed captioning if she chooses. She'll read the lyrics of a song and see the names of roads on the GPS. She'll know that even though it sounds like "Ghost Mustard", it truly is "Ghost Busters" they're singing.

Reading will give her an extra tool to use in decoding the world.

Guidance from adults with hearing loss

2010-01-10T06:07:00.004-05:00

Months ago when my blog found some focus in Sunday posts about hearing loss, I was mostly interested in reading other parent blogs. I liked reading about the same sort of thing I was writing: speech therapy progress reports, hearing aid issues.

Lately, I've been interested in blogs written by adults with hearing loss. People who got hearing aids after they already possessed language or lifelong wearers who've already conquered the childhood challenges of life with hearing aids.

Here are a few blogs giving an adult perspective on something my daughter can't yet really explain:

Do You Hear What I See: A recent post about the pros and cons of normal hearing caught my attention. Sometimes it is relaxing to be able to shut out those annoying sounds, but it is outweighed by missing a kids cry for help in the night. I'm a bit relieved there were pros!

Growing Up Hard of Hearing is written by Danielle, a girl born with bilateral sensorineural hearing loss. I love her post 17 Misconceptions about People with Hearing Loss.

Aided as an adult, Speak Up Librarian tells of the first day with hearing aids. It is great to think of all the things Julia heard for the first time with her new hearing aids but didn't have the language to articulate.

These bloggers are giving me some insight into the coming years. Their prospective is so much more valuable that the old "hearing aids are like eyeglasses for your ears." I have normal hearing and can tell that it's not quite that simple.

The dreaded IEP meeting

2010-01-03T06:09:00.002-05:00

The Individualized Education Plan (IEP) is the document starting at age 3 that will guide the all aspects of a child's therapy and learning environment for the following year.

Our personal journey through the IEP process seems like something that happened long ago and far away. The memories have dampened to include only the most ridiculous comments that came from the other side of the table. (The interim teacher of the deaf read Julia's audiogram upside down before reassuring us that she could hear speech sounds just fine!) Subsequent revisions and updates to Julia's IEP have come much easier and without the war mentality required for that first meeting.

The advice I offer to any parent preparing for this meeting is to know and visit every option available to your child. Visit the programs even if you hate the idea of them. Visit the school you know won't be approved. At every turn there is information (ammunition if you will) to be gained.

Before our meeting I visited the DePaul Institute, a preschool program suggested by the other members of the IEP team, and two different speech classrooms. We battled to get decision makers at our meeting and then discussed each option and each element of the plan for over three hours. It was an epic undertaking.

We left feeling satisfied that we'd secured the best setting available for intense speech therapy needed to overcome the time lost before Julia got her hearing aids. Eighteen months later we had results to confirm that we'd been successful in advocating for our child.

It is most important to remember that this is no small undertaking. You must be on your game. You have to be prepared. You have to study. A great starting point for getting all the most out of an IEP is Kids Together, Inc, a non-profit resource for kids with disabilities. They have a terrific list to get you started with your research and planning. Except for their suggestion to "make the meeting festive", I agree wholeheartedly with their suggestions.

Our IEP meeting was far from festive.

Still playing our favorite listening games

2009-12-27T06:53:00.005-05:00

The first informational packet from our audiologist included the web address of the John Tracy Clinic in Los Angeles, CA. Hungry for support and resources, I eagerly enrolled in their ten-session distance learning program.

Each month, I completed an online questionnaire and printed another packet that helped me decode the mysteries of my daughter's hearing.

At the end of each lesson is a section of games and activities. It was John Tracy Clinic that prompted us to write our first experience books, Catching Lightening Bugs and Watching Daddy Race. They had us playing "will it float?" to expand vocabulary. They helped me incorporate sound and listening skills into each day.

We still play variations of our favorite game from the JTC preschool program: freeze dance. Tonight it was more of a hot potato game while I played the piano. All versions include stopping an action when the music is off.

This distance learning course was a terrific resource during the first year after my daughter's hearing loss diagnosis. The variety of games either enhance language or help kids gain listening skills that will help them locate and identify sounds. Plus freeze dance is good family fun - you just have to be doing something weird when the music stops!

(Mis)understanding Hearing Loss

2009-12-20T06:43:00.002-05:00

Hearing loss has been difficult to explain to the people around my daughter. I rely heavily on my own past perceptions of the hard of hearing. Before I became educated and intimately acquainted with the workings of the ears I just didn't understand much about hearing.

Before Julia, the only hard of hearing person I knew was my grandfather. His hearing was destroyed during World War 2. He has hearing aids that he won't wear. Our communication with him consists of yelling at increasing volume and repetition.

Seeing hard of hearing older folks made me think that hearing was sort of "on" or "off". Grand pap used to hear, now he doesn't. Everything needs to be louder. When Julia was a baby, I knew that she could hear because she responded to some sounds. I had no idea of all of the things she wasn't hearing.

The first thing the audiologist showed us after the testing was conclusive was the "speech banana". This was a confusing bit of information at first. I remember feeling weepy when I saw that whispering and birds singing were so far out of her range. I studied the chart and tried to figure out where Julia's speech approximations came from and how we took so long to diagnose the hearing loss.
The banana shape encompasses all of the speech sounds. Different letters are marked on the chart. Normal hearing is represented by the dashed line at the top of the banana. Taking Julia's 55 dB loss as an example, all of the speech sounds are above that mark. Theoretically, without her hearing aids she can't hear any of those sounds.

Things louder than 55 dB like a dog barking or a piano would be accessible for her without hearing aids. But the tricky part is that it isn't so cut and dry. She wasn't missing all language and hearing dogs barking consistently. There are just too many variables to figure out what her world was like before the hearing aids.

At this point, the 55 dB loss is "corrected" by hearing aids. Aided, Julia is hearing at the dashed line above the banana. It's still not as good as normal hearing due to background noise and other interference that I will never understand. This is why her teachers will be compelled (by me) to give Julia preferential seating and establish eye contact when giving instructions. There will be additional effort to overcome the imperfections of the aids.

Educators still ask, "can she hear me?" They see the hearing aids and think she's hearing nothing. I can show them speech bananas and explain listening bubbles, but my biggest fear with moderate hearing loss is that the school will just ignore it. The hearing aids do get her to that dashed line after all. So my husband and I remain geared up for a long school career of advocating for our child so that her disability never has a chance to interfere with learning.

Constant concern in an ear-centric household

2009-12-06T07:57:00.002-05:00

During preschool on Thursday, I got a phone call. Julia's hearing aids were beeping. There was palpable anxiety in the voice of the go-between chosen to call mom for the teacher. I told her there are batteries in the classroom. I told her where the batteries are located in the classroom. I tried to calm her a little by explaining how to open the battery door. I gave them the option to call if they couldn't perform the operation and I would drive back to school and do it.

They never called back. They were able to figure it out. Julia gets in the car after school with the story already barrelling out at me. They changed my magic ear battery! Just the left one! I checked and graded them a "B" on putting the aid back in for her. No one gets all of the nooks and crannies lined up like mama does.

This is the first time we've had one go down when I wasn't around. She survived.

But a related issue has popped up since our last audiologist appointment. The result of that visit on the Monday before Thanksgiving was that Julia is having fluctuations of 5 to 10 dB at a few frequencies. Next time we have to make her wear the ear plugs she despises to try and get consistent readings. For the last three appointments, at Julia's request, she's been wearing headphones. The audiologist thinks this is messing us up. Thankfully, she believes the hearing is stable, but perhaps the headphones are shifting and impacting the results.

The audiologist took the hearing aids for a long time to check the programming. She returned them to us with "fresh" programming and explained that tweaking the programming each time can cause "compression ratios" and stuff to get messed up. She noted that we might hear a difference during our listening check.

I thought that I couldn't possibly notice a difference. I just confirm that they're on and don't sound crackly. But they sound wonderful. Clear and maybe louder and just plain better than before.

Since the "fresh" program we've had two sets of batteries die after only three days. Usually batteries last for at least two weeks. Occasionally we come across some wonder batteries that will last a month. Three days is not a good lifespan.

The FM will draw more power, but if that is the case we should have been seeing a problem since the start of school. We're left to wonder about the super-clear sound being some kind of hyper-power drainer. And my battery tester doesn't really work so what if Julia is false reporting low battery beeps?

All I think about is ears.

Then at bedtime Thursday night, her right ear was hurting. Ear pain about a week after a mild cold. Ugh! The next days found me with my head cocked, listening intently for the tell-tale slushy speech. Thankfully, the pain was a fluke or went away, but I'm still worrying over those ears.

Look for my article What Works at Home? Guiding Your Child's Speech Development in the Nov/Dec 2009 Volta Voices magazine (available with your AG Bell membership)!

Books for kids with hearing aids

2009-11-29T07:48:00.004-05:00

As soon as we knew Julia was going to need hearing aids, I spent some time on Amazon trying to find a book to explain what was going on. I came across two choices at that time: Cosmo Gets and Ear and A Button in her Ear. I purchased Cosmo and checked the other out from the library.

A Button in her Ear is a good story, but I didn't add it to our collection. The pictures in the book are of outdated hearing aid technology that requires the little girl to wear a necklace contraption and cords that attach the hearing aids. We found it at the local library, read and returned the book.

Cosmo Gets an Ear has great images of over-the-ear hearing aids. Even with up-to-date technology pictured, the book is useless to us because the format is nearly impossible to read aloud. It takes a humorous approach to Cosmo's hearing loss. Each page has multiple choice options for what the character Cosmo is doing or thinking. I've never figured out how to make it flow enough to be a compelling read aloud story. Perhaps for an older kid that reads on their own this book would be helpful. It just isn't appropriate for young kids.

Fortunately, we found two favorites in the books published by the manufacturers Phonak and Oticon for distribution with kid's hearing aids. Having Hearing Aids is written and illustrated by Peter Augustine. Peter was eight-years-old when he wrote this book in 2003. His story exactly mirrors Julia's as he was diagnosed at age 3. He describes himself as saying "weird words" that his "mom couldn't understand." It gives us an opportunity to talk about the time before Julia was aided and how she couldn't learn to talk without her hearing aids. Peter's book is provided with Oticon hearing aids, but I was able to get a copy just by contacting the company. You can print a PDF version of Having Hearing Aids to read until you can get your hands on a bound copy.

Phonak includes their book, Oliver Gets Hearing Aids, and an Oliver puppet with their hearing aids. Oliver's hearing loss is discovered when he is in grade school. The doctor's visits and audiologist booth description are spot on. Oliver even gets earmold impressions made. It's a perfect way to review what is going to happen before an appointment with the ENT or audiologist. Note: Amazon does sell this book as Patrick Gets Hearing Aids ($11.90), but you can get a copy from Phonak for free or click the link to get a PDF.

A follow up in Oliver's adventures is Oliver Gets FM. I sent the print out of this PDF to preschool so the teachers could easily explain to the other kids why they were wearing the FM transmitter. I think it also serves to explain the FM to the teachers!

The books have been helpful in building Julia's understanding of her hearing loss, the hearing aids, and that she's not the only kid that can't hear with her plain ears. They seem to add instant credibility when explaining hearing aids to Julia's friends and classmates. These books offer a great way to inform your family, child, and their teachers what hearing aids are all about.

The books mentioned in this post: Cosmo Gets an Ear by Gary Clemente, A Button in her Ear by Ada Bassett Litchfield, Oliver Gets Hearing Aids, by Maureen Cassidy Riski and Nikolas Klakow, Oliver Gets FM by Maureen Cassidy Riski, and Having Hearing Aids, Written and Illustrated by Peter Augustine.

Daily Life with Hearing Aids

2009-11-24T07:20:00.003-05:00

When Julia first got her hearing aids in April of 2008, I had no idea what to expect. I'd never touched or cleaned a hearing aid. I didn't know how to put them in for her. I worried about them constantly.

Now it's just part of our daily routine.

Julia wakes every morning and makes a sleepy trek into mommy and daddy's bed. She lays down and I get her hearing aids ready. Most mornings I still check the batteries. The audiologist informed me that my baby is now quite old enough to tell me when she needs new batteries, but I'm pretty slow to adopt grown-up stuff like battery independence with my only little darling. I have a stethoscope that I attach to each one and say the LING sounds (ah, ee, oo, s, sh, mmm). On school days I attach her FM boots and check the LING sounds with the whole assembly.

I put the hearing aids in for her. I was having her do it on her own with her old ear molds. It wasn't pretty to watch, but she got the job done. The new pink sparkly ear molds are so form fitting that I have to help her again for a while. As with the battery testing, I'm coddling a bit.

The day goes on normally except that she can't get her "magic ears" wet. People look at me strangely when I've got her in full rain gear for a sprinkle. It's also of paramount importance to get them out before a bath or a shower. We took them out to ride Splash Mountain at Disney World. I'm pretty cautious with the things, they'd be gone for a couple of weeks if they had to go for repairs.

She tells me when they give a low battery beep. I have batteries in my purse for when we're out. I left batteries at preschool. There are size 13 batteries everywhere.

At night after stories and prayers and hugs the hearing aids come out. I check the batteries (can't give it up) and put the hearing aids in safely in the drying jar. They get all nice and ready for their next big day of being Julia's ears.

The goal is for her to take over doing all of this on her own. Except for the LING sounds test. I imagine she'll soon even be able to report if they're not working quite right. Writing this all out shows me I should make her hearing aid independence more of a priority. She is growing up!

Our First Visit to the Booth

2009-11-20T06:43:00.005-05:00

By the time we made it to the audiologist's booth at Children's Hospital, I had already come to terms with some level of hearing loss. Or maybe not. The thing was, I didn't understand hearing the way I do today. In the time between scheduling the appointment and having it, there was a considerable amount of family discussion.

"Well, she heard THAT," we'd say of some noise. She'd turn her back and I would call, "Julia." She wouldn't even flinch. That was my major sign.

The night before the appointment, I had a heart-to-heart with my husband. I told him that if she could hear normally then we had big problems. Julia was engaged and interested in a lot of things. Talking wasn't one of them. For a year of speech therapy in our home there had been little gains, but on the night before our diagnosis, I felt like I was banging my head off of the wall. She had become completely disinterested.

Julia sat on my lap in the sound proof booth. Our audiologist went into the other room with all of her gadgets and played whirling whistles over speakers. They were very loud in the beginning. When Julia turned toward the speaker that was making the sound, she was rewarded with a little mechanical character that lit up and did a dance.

As the sounds got quieter, I got a heavy feeling in my stomach. She's failing pretty bad, I thought.

But even then I had strange conflicting feelings. She was just a baby (in a month she'd turn 3-years-old). Maybe she just didn't like the dancing bear. My brain couldn't choose which disability I preferred for my daughter: hearing loss or that other thing. The other thing being whatever was keeping her from learning to talk. But maybe there was no other thing, and that was what I held on to.

About now I would like to go back and shake the past me. I would tell her it will be okay, this is going to work out. But that day, the whole thing seemed like it was falling apart. I thought she was healthy and she wasn't. I thought I had done a good job being pregnant and I didn't.

The audiologist leaned into the microphone and told me she was coming over to our room.

I took a deep breath and very specifically warned myself not to cry. "I found a moderate hearing loss in both ears," the audiologist said. There was a lot more information that day. She used little rectangular block headphones to transmit the sound directly to the nerves. She could tell that this is a nerve problem, not some little tube that was too small in my baby's ear. I was told that it is not uncommon for a newborn to pass a hearing screening, like mine did, and then find something later.

She reassured me that we'd found it sooner rather than later. That intense speech therapy would catch her up. I had gone inconsolable and was trying to hide my tears in a tissue.

I couldn't even talk to my husband on the drive home. Saying it out loud made me weep so badly, I thought I would probably wreck the car. I whimpered that I would just talk to him when I got there.

The coming months were tough. We scheduled an ABR test and had to cancel it due to an ear infection. In an Auditory Brainstem Response test, they sedate the child and play a series of clicks while measuring brain activity. It is the definitive hearing test before they will dispense hearing aids for a child. In the wait for the ABR we were still debating the results of the booth test. I was pretty confident, since I was there, that the audiologist knew what she was talking about.

The results were confirmed. As Julia has grown, she does more and more "big girl" testing in the booth. She's identifying pictures to show how well she can discriminate sounds. She's still listening to those whistles, but now she feeds zoo animals. "Give the banana to the monkey," we'll prompt her.

She's not great in the booth. I've never seen another kid do it, so maybe she's a rock star in there. But she gets bored with it. I feel incredibly nervous watching her, just hoping that nothing turns up to indicate a progressive loss. But that is the power of the booth. Every six months it gives us good news, or not. We go back on Monday and hope for more good news.

Squeaky Old Ear Molds

2009-11-15T08:03:00.001-05:00

My least favorite part about my daughter’s hearing loss (other than the obvious fact that she can’t hear with her plain old ears) is ear molds. Ear molds are the slightly pliable molded part of the hearing aid that goes in the ear. They must make a tight seal that doesn’t let any feedback into the ear or the hearing aids give a nasty ear-splitting squeal.

For the first several weeks of brand new ear molds, they fit so good and tight I can hug her against my shoulder and the hearing aids don’t make a peep. As they shrink (or perhaps her ears grow) even cupping a hand over her ear will result in a shrill screech. I would rush to replace the things at that point, I do so love hugging and cuddling, but it isn’t time just yet.

The next step is random squealing. Eventually, from a growth spurt or the time the ear molds have spent dehydrating in the drying jar, the ear molds won’t have that super snug fit. They will cause the hearing aids to squeal without reason. They will cause the hearing aids to squeal because I’ve had the audacity to touch my daughter’s hair. They squeal and squeal.

To stop the squeals, we visit the audiologist who is always able to see us at a moments notice. Julia is a superb patient. She allows her ears to be filled with yellow-green goop. The new ear molds are mailed directly to our home. Last week she got to pick her own special color for the first time. Up until now she’s always had clear ear molds. She picked light pink with sparkles.

The wait with those old, squealing, gross looking ear molds is nearly unbearable. I checked the mailbox everyday with great anticipation only to find the things took more than a week to get here. There was no mail on Veteran’s Day, but we needed those ear molds!

I wish I could know exactly one week before they go bad. I could have the new ones waiting at the first squeak. Or perhaps just new ones every two weeks would work, for the cuddling.

The FM fight

2009-11-12T07:19:00.002-05:00

In the time since Julia’s hearing loss was diagnosed I’ve learned much about assistive technology. Here in PA, the county provides her with an FM System that transmits the teacher’s voice directly to her hearing aids. The teacher wears a necklace-type transmitter that they simply power ON to use. It’s handy in noisy classrooms or when they sing songs with background music. It really helps her. Unfortunately, a great deal of my newfound knowledge pertains to the resistance/inability of preschool staff to use the technology.

In our last preschool, I could find no other excuse than the age of the staff. There were three of the most kind, attentive, wonderful women in her classroom every day. They seemed to go the extra mile for the kids. They just couldn’t figure out Julia’s FM system. The thing has one button. I showed them how to use it. A hearing support teacher showed them. They didn’t think she needed it. Finally, I threatened that if they couldn’t figure it out, I would take her to a new school.

Now we’re at a new school in a new county. The teacher, a former second grade teacher, was quite familiar with FM. She’s used it before. Everything should be copacetic, or so I thought.

Last week, I picked up my lovely daughter and she says, “Mommy, what was that sound?” I hadn’t heard anything. “I didn’t hear anything, sweetie. How was your day?” I asked. “It’s my FM,” she says, very matter of fact. I look in her backpack that she had just pitched onto the front seat of the car. There inside is her FM packed inside a freezer bag, still powered on. Way to go new preschool!

Now that she’s older, these inattentive dolts give her an opportunity to practice her self-advocating skills. I told her to remind the teachers to turn off the transmitter at the end of the day. She gave me a whole breakdown, “Mommy, when it has numbers it’s on. When it has no numbers, it’s off.” Just listen to the four-year-old, everything will be okay.

Speech Therapy Graduate

2009-11-05T06:33:00.003-05:00

Just over eighteen months ago, Julia was fitted with her two hearing aids and the world of sound was turned on. We began, the very next day, with intensive speech therapy to help her battle back from the significant language and articulation delay the hearing loss caused.

I drove her to Children’s Hospital’s North campus twice per week for over a year. Every sound she’s learned has been drilled and practiced in the tiny office of her speech therapist. On a few occasions, I would observe through one-way glass with headphones to hear their work. It never failed to make me feel like crying. Whether she was making progress or stalled in a dreaded plateau, the feeling of watching her in that little cube laboring over what should have come without notice, it made me sad.

About six months ago, her therapist was coming out after each visit with reports of how fabulous Julia was doing. In structured activities, her articulation was perfect. We decided to drop to one day a week, Wednesday.

Yesterday, our weekly journey to speech therapy ended. I was a little misty-eyed saying goodbye to our terrific speech therapist that has helped us so much in our most difficult parenting hurdle. It’s hard to separate the trauma of a change in a long-time routine from the joy of knowing we accomplished just what we wanted to. We achieved our goal – we caught up to normal in time for Kindergarten. We did it!

Trusting your ears

2009-10-26T07:46:00.003-04:00

I observe my daughter more as a speech language pathologist than a mom. I have no formal training in that capacity, but I've been the leading advisor to the educational team. I take the responsibility very seriously. She's achieved her speech goals and the time is coming when I'll have to let go of analyzing her listening/speaking skills. Just not yet.

I've stumbled on a a new problem that will probably self-correct, as many do. She is over-confident in her hearing. She hears something and that is what was said. She'll even argue with me now. "Mommy, I heard you, you said..." She lacks the experience to match up a half heard word to the list of possible choices.

This came to my top-of-mind awareness on Thursday when she met a little girl on the playground. I could hear my Julia say, "Harmen, that's an interesting name." The girl's name was Carmen. Julia is growing up in a new age where someone probably has named their child Harmen, but it occurs to me that maybe she doesn't question what she's heard because she still thinks any combination of consonants and vowels can be a word. She might not know what it means, but it could be a word.

Yesterday she was repeating the instructions on the GPS. "Turn right on Stupid, Bill, Bike," she said. "No sweetie, it's Steubenville Pike," I tell her. "Stupid Bill, PIKE," she says.

We're very fortunate that Julia's hearing problem is just a matter of volume. Her scores have always been perfect on the sound discrimination tests she takes at her audiologist visits. There is no distortion when her hearing aids amplify sound. The current issue seems to be more of a social conditioning problem.

So now I'll set out to gently draw her attention to situations when it's tough to hear all the sounds a person is saying. We'll continue to teach her to ask someone to repeat what she hasn't entirely heard. And I'll hope not to destroy her confidence in her hearing ability.

The constant talking phase

2009-10-20T20:11:00.004-04:00

When Julia was diagnosed with hearing loss, those close to me tried to pull me out of my devastation by saying, "some day, you'll beg her to be quiet." I would smile, nod, try to suppress the lump in my throat and pray that they were right. They were and I wish they'd have offered some tactful advice on initiating some quiet time.

In a few days, Julia will have had her hearing aids for 18 months. A short while ago, I was calculating her "length of utterance" to see if she was using three word sentences. Now we have trouble having on an adult conversation during her waking hours.

She has something to say about everything. She has no internal monologue. She has been in bed for forty-five minutes and she still hasn't stopped talking.

During the day we chat about everything. I do nothing but pay attention to her for the majority of our time together, there's no need to have her stop talking. I've given up luxuries such as having a moment to think my own thoughts.

My husband gets home and I get the distinct impression he might like to say something. This is because he often tries to speak. Julia barrels right on, she needs fifteen different questions pertaining to the plot of Disney's Hunchback of Notre Dame answered. "Daddy is trying to tell me something, you have to wait," I tell her. Her sad little face looks like someone just shot our dog.

It seems hopeless in the daily grind that she'll someday be able to modulate her talking. Then I remind myself of the tiny signs of growth in this area: that she doesn't interrupt when I'm reading stories to her, that she can wait while Daddy tells his story. Someday I'll be begging her to tell me what she's thinking. Moments of silence are coming soon!

One thing I've gained from parenting a hearing impaired kid is a supreme appreciation of her speech. We waited such a long time for her to sing us a song or tell us a story, every word she says (and there are so many) is that much more special.

The girl with the things in her ears

2009-10-13T14:04:00.004-04:00

We've never had anyone notice Julia's hearing aids. She usually wears her hair down or "straight" as she calls it. The over-the-ear part is flesh colored and she has clear ear molds. From a distance you can't even see them.

Ballerina hair styles, a bun today, and close proximity of dancers has led to some commentary on her magic ears during ballet class. After class her teacher told me that one of the other little girls addressed my daughter, "hey girl with the things in her ears." The kids are so innocent was the teacher's take on it.

In the car Julia told me that a girl asked last week, "what are those things in your ears." Julia told her they were magic ears and the girl didn't understand so she told her that they help her hear better. My pride in her ability to explain her disability is tempered with an annoyed worry for the future.

Perhaps my experiences of having a pair of really ugly eyeglasses in the first grade are making me think we'll have tough times over this in the future. A boy in my class, Matt, who incidentally did remain our school's resident hottie even into High School, said that my glasses were upside down. They had that kooky stem that is most commonly seen on old lady glasses. When he got over harping on them being upside down he latched onto them probably being my grandmother's glasses. Needless to say, I was more comfortable wearing my conformist wire frame glasses from then on.

By Middle School I was wearing a Milwaukee brace to treat my scoliosis. Kids weren't as mean as adults I encountered during that time.

Julia has no choice. She'll have to wear her hair up sometimes and innocence will soon be a word no longer associated with the kids in her class. I can only hope that her current sunny, resilient personality will carry her through those times when someone tries to make her feel self-conscious. And that kid in her ballet class better learn her name is Julia.

Giving better support

2009-08-26T19:57:00.006-04:00

In my devastation when Julia's hearing loss was discovered, I sought to comfort and arm myself with as much information about the problem as possible. I read every bit of literature I could find on the subject of sensorineural hearing loss, went to a state sponsored parent education workshop and attended a parent support group meeting. Each activity provided me with endless opportunities for expanding my knowledge and my list of concerns.

Pamphlets and books were written for kids diagnosed as infants. They served to reinforce the importance of making the baby wear hearing aids all day long. They stressed that the first three years are the most important for language development.

The workshop and support group seemed skewed to the parents of kids with profound losses. My child only has a moderate loss. I felt a little sympathy and an overwhelming vibe that I should be skipping around celebrating that she isn't more deaf. "It's just a moderate loss, she'll be fine."

There I was with a toddler, nearly three years old, just diagnosed. I couldn't imagine how she'd ever speak normally. I needed something more than a brush off, "she'll be fine."

She is fine. Even back then, I knew she would be. But if I was approached by someone starting on their own journey as a parent of a child with hearing loss, I hope I would have something more to offer.

Commiseration is an obvious starting point.
It stinks to find out that your child is going to have a life altering, lifelong disability. It's not like wearing eye glasses. Eye glasses for your ears works to describe hearing aids to a preschool classmate, but it's not an adequate analogy for finding out your baby has never properly heard your voice.

Going to all of the IEP meetings, speech therapy, audiologist appointments, ENT appointments, testing - it can be tough. Even though a whole waiting room of parents were waiting on kids in much more serious situations than mine, I still had a tough time when Julia was under anesthesia to have the ABR test that confirmed her hearing loss.

There have been and will always be some problems.
I was deeply concerned that there could be teasing about the hearing aids themselves and the speech delay. I'd witnessed a kid in a grocery cart mocking my daughter and asking his dad why she talked like a baby. Once I had to restrain myself from pinning a boy's arm behind his back and whispering, "I'll break your little arm if you ever touch her hearing aids again, got it?"

I've read about adults with the same level of hearing loss feeling left out at parties and even family dinners. Leaving the table with hurt feelings because they missed the punchline of a joke. It's something we'll have to be cognisant of in the future. It will never go away.

These things aren't covered by a well-meaning catch all, "it will turn out fine." Sometimes better support comes from sharing the things that are tough and how over time it gets easier.

End of summer progress report

2009-08-26T19:42:00.003-04:00

At the beginning of the summer I was geared up for a difficult time at the pool. There had been enough frustrating experiences with Julia misunderstanding and becoming frustrated while swimming sans "magic ears" that I sought help from various sources. No one responded to my question: what do you do when she can't wear her hearing aids?

Now the summer is winding down and swimming pool days are numbered. Without any outside help we've seen vast improvement. Even in this obscure area Julia has adjusted and is now thriving.

The change is in an awareness that she has developed. She tells me that she can hear people talking, but she can't understand their words. She reminds me several times, "You have to talk loud, I don't have my magic ears." She makes better eye contact. She is compensating.

This could be some sign to me that I can stop worrying. I doubt that there will ever be an end to my anxiety. But even I, the over-protective parent, have to admit she is a competent, autonomous little person.

Soon she'll be explaining to other kids all on her own how they can help her hear better and I'll sit back and listen from a lounge chair. She may even be able to train a swim instructor in the best way to communicate. Another battle is conquered.

Special "hearing" moments

2009-07-13T20:05:00.008-04:00

My daughter has a moderate hearing loss in both ears. She got hearing aids on April 23, 2008. I began a distance learning program from the John Tracy Clinic in California around the same time. Recently, I finished the lessons and was asked in my last report to describe my special memories of the past year.

These were the two that came to mind:

The very first walk my husband and I took with Julia after she was aided was to our same old park. As soon as we got out of the house, she ran to edge of a steep hill where a road with a lot of traffic passed below. She wanted to see what all the noise was from and I had my first experience saying, "Those are cars! You hear the cars!" I was choked up for most of that walk to the park as she stopped to listen as a man dragged his garbage can over the black top driveway and every other noisy thing that I had never taken the time to notice before.

The second "special moment" happened at a zoo class I took Julia to at the Pittsburgh Zoo. I took her to the one titled "Zoo Tot Zoo Tot What do you hear?" for obvious reasons. The instructor had a guinea pig that made interesting sounds when she rubbed its belly. Julia kept asking to hear more! It was such a subtle sound, and I feel so blessed that she can hear it now!

Trouble with a hard-of-hearing swimmer

2009-07-06T20:58:00.006-04:00

Julia loves to swim. Over four summers she's progressed to have some skill at it. With a pair of goggles she can swim about six feet under water. She's come a long way from the first trip to the pool when we dipped her tiny baby toes in the water.

Before her hearing loss was discovered at age 3, the pool was the same as any other place. It was never any use yelling for her. She was on her way to do what she was going to do. I ran after her and re-directed her. It took all that time for me to realize something, her hearing, was wrong.

Now we live every day with the miracle of her hearing aids. I'm grateful when she stops running because she heard me calling to her. We can tell each other stories. She talks constantly.

When we go to the pool and take out her hearing aids so she can go in the water, the hearing problem seems progressive. She responds really well at first. It even gives me a thought that she could get by without being aided. As time goes by, she seems to miss more. Lately we've been having tremendous difficulty with her misunderstanding me.

Today was a perfect example. We went for a short swim during which it seemed she could hear everything she needed to. I'm sure there would be no hope of her carrying on a conversation with a stranger, but mom's voice is the most important anyway. We got out of the pool after no more than twenty minutes. The apartment complex doesn't heat the water enough for our liking and Julia needed to warm up.

As we wrapped ourselves in towels, Julia became frustrated that I wasn't putting hers on the way she wanted it. I tried to explain what I was doing. She started to whimper. I conveyed that it was time to go home anyway.

She's been a real stinker about wanting to let her hair air dry. This has always been a point of contention with us. I spent all of last summer trying to minimize the time she spent without her hearing aids so that she could be exposed to as much language as possible. Now that she is doing so well and talking every minute of the day, I figure it will be okay if she spends longer days at the pool and even if she lets her hair air dry.

Once we were home, it took about six tries to get her to understand that she should put on underwear. All of these even though we were standing two feet from each other. She was facing me and I really think that she'd have gotten this just after her hearing aids came out. I finally had to open her drawer and point.

The hair was still air drying and Julia was having blueberries for a snack. She brought one to me that was all brown and instructed me to eat it. I didn't want to eat it and I told her neither of us should eat it. I threw it into the bushes and she immediately started sobbing. She wanted to eat blueberries. I told her she could still eat the good blueberries. She started into a tantrum.

I decided that enough was enough and I was going for the hair dryer. This did not go over well.

Once the hearing aids were back in the misunderstanding and the tantrum were soon resolved. Julia remained mad at me for a while because she didn't want her hair dried.

I'm stymied with this issue. I've spoken to her hearing teacher and I've never had a bit of advice other than to make sure she's looking at me when I speak to her. She is looking at me and she's still not getting it.

I think as Julia grows up, she'll be able to compensate for the hearing loss when she's swimming. I hope so, because she has the makings of a tremendous swimmer. Perhaps in the meantime I'll have to learn sign.

I HEART PA

2009-06-22T20:43:00.006-04:00

I have lived in Pennsylvania my whole life. I've never even travelled much. Until recently, I was only living here because I'm overly attached to my parents. I have trouble missing a Saturday at their house.

Still I could live in Wheeling, WV and be close enough for that.

Then, in February 2008, my daughter was diagnosed with moderate hearing loss in both ears. And while I was still in shock over something I thought I was prepared to hear, the audiologist said, "You don't need to worry about anything."

She gave me a packet prepared by Children's Hospital and the phone number of a very knowledgeable, personable woman whose sold purpose it is to handle insurance issues. Within a few days of the definitive ABR test to confirm Julia's hearing levels I had a bright yellow Access card. A week or so later it was replaced with a more socially acceptable UPMC for You card that has paid entirely for a pair of hearing aids, ear molds, audiologist check-ups, ENT visits, and all of her routine medical care.

No private insurance would pay for hearing aids even though the hearing loss is deemed educationally handicapping. My kid couldn't hear enough to learn to talk, but in most states that would have been our problem alone. We would have likely taken a loan and had a hearing aid payment for the rest of our lives. Not in my Pennsylvania.

Pennsylvania kids with all kinds of disabilities are on Medical Assistance, removing a burden from their families that allows them to focus on caring for the child rather than figuring out a payment plan. There is no income restriction for a qualifying disability. The program has been a blessing for our family and a benefit of living here that will be hard for any other place to top.