Hearing Anniversary: Cochlear Implant

Six years ago today we saw our lives change with the help of amazing technology, amazing doctors and nurses, amazing audiologists, amazing therapists and amazing family and friends. See for yourself:

Right now she’s using her bionic hearing accessories to listen to Spongebob, dance to “Get Up Offa That Thang,” sing to “All In This Together” from “High School Musical” and read “Junie B. Jones is Not a Crook.” Life is sweet!

Delivering the Diagnosis: Your Child Is Deaf

When children are diagnosed with hearing loss, parents feel grief, anger, anxiety and guilt.

Audiologists can help them through these emotions by remembering this: You’re about to tell a family the child they think they know does not exist.

At least, that’s how my husband and I felt when our 18-month-old daughter was diagnosed. All the dreams and hopes and plans were put on hold when we heard:

“She’s never heard your voice. She doesn’t even know her own name.”

Thankfully, our audiologist was kind and straightforward in her diagnosis, and once we were over the initial shock, she outlined the various treatment options available.

Now that our daughter is 7, hearing with bilateral cochlear implants, and excelling in second grade, those hopes and dreams have returned. We just have to do a little extra planning and coaching. This can be true for all families, regardless of the treatment they choose.

Follow these tips to help make the diagnosis easier for parents to digest:

* Show sensitivity when delivering the news; don’t just blurt it out.

* Explain in layman’s terms the type and severity of loss and what it means.

* Give parents a chance to recover from the shock before telling them about treatment options.

* Offer information on support groups for parents of children with hearing loss.

* Offer a complete list of options when it’s time to discuss treatment. From ASL to hearing aids to cochlear implants to Total Communication, any and all options available and appropriate for the type of hearing loss should be discussed.

* Put families in contact with someone who can help them navigate insurance, approval and Early Intervention issues.

* Offer contact information on other families who have been through the same situation.

This is an emotional time for families, so anything you can do to make the journey forward a little easier will be appreciated.

Higher and higher

Saturday we went to a local water park with some friends, and Riley impressed me (OK, and scared me a little) with her courage. She jumped off the high dive. My knees were quivering, but I didn’t want my anxiety to make her afraid, so I kept it to myself. (Her friend had already done it (and even off the first platform, and Riley decided she wanted to try.)

She climbed up the first time, got about halfway down the board, then turned around and backed down the ladder. The second time, she jumped into water – all 15 feet of it. And the third climb was also a success. She tried a fourth time but decided the board was too “wiggly” and came back down.

I was so proud of her for trying and then overcoming her fear. But, boy, my stomach was in a knot. 🙂
Last night, I had an argument with myself. It went like this:

“What were you thinking, letting her do that?!”

“She is fine! Nothing happened, and she can swim now! Isn’t that great?”

“Yeah, but what if she’d slipped? What if she’d fallen?”

“She didn’t. She had fun, and she’s not a scaredy-cat like me. Stop.”

Finally, I just said a prayer, thanking God for keeping her safe and for her courage. And I was able to sleep. 🙂

Before life got complicated

I remember pretending to be on Charlie’s Angels when I was little, running around the house with my hand held in the shape of a gun searching for bad guys. I don’t remember which character I was, probably Jaclyn Smith’s Kelly because I’m a brunette. My cousin Stephanie was probably Jill since that is her middle name, and maybe our cousin Nichelle was Sabrina because she is a brunette, too. Or maybe I was Sabrina and Nichelle was Kelly … she is prettier than me anyway. 😉

Today, Farrah Fawcett, who played Jill and was loved by millions of girls for a her fabulous feathered hair and by millions of boys because of her sexy swimsuit poster, died from cancer. And she was brave through it all.

A lot of people didn’t take Farrah seriously as an actor until “The Burning Bed,” but she went on to do something more important than be on a movie screen. She shared her struggles with the disease in the hope that someone would be inspired to fight harder, to get tested or to take better care of themselves.

Goodbye, Farrah. You’ll always be part of my childhood.

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The world also lost another pop culture icon today: Michael Jackson, the King of Pop. For me it was the boy and the music.

His songs were part of growing up, too, so his death is bittersweet. Most of us are mourning the loss of a bit of our childhood rather than what he became.

Songs like I Want You Back and Beat It and Wanna Be Startin’ Somethin’ are classics. You can’t deny what he did for music – it’s just terrible how his life changed. I think fame messed him up. I think about his children and wonder how they will cope and who will help them.

I remember when my brother got the Thriller album; we were so pumped. We played that record, and I do mean record, over and over and over. And my brother could bust a move. We all learned to do the moonwalk on my parents’ hardwood floors, in our socks. Then we progressed to wearing shoes. Some of us even tried it on roller skates with varying degrees of success.

And what cheerleading squad in the ’80s didn’t have a routine to Beat It? Even though I wasn’t a cheerleader, I knew the moves and thought I was something with my tape recorder out in the backyard, jamming to MJ.

So even though the grownup Michael Jackson wasn’t someone I liked very much, the boy and his music will always be a little bit special.

Thanks for the music.

My heart

Riley is spending the week with my parents, and I call every day to talk to her. I called this morning and my dad told me something she said that nearly broke his and my heart.

Riley: “Pawpaw, why do have to wear implants? Why can’t I talk?”

After a choked-up pause, Daddy told her, “You can talk as good as anybody else. You sound just fine.”

He said it broke him up to hear her say that and wondered if someone had told her she couldn’t talk right.

It’s possible, but I certainly hope not.

When she gets in a big hurry, we tell her to slow down and use her words, but we never tell her she can’t talk correctly. We just tell her to use her words so everyone can understand her.

I hope that hasn’t prompted her questions. Looks like it’s time for more positive reinforcement.

By the way, she’s sounded awesome on the phone this week, appropriately answering all my questions about Vacation Bible School, doing math with Pawpaw and having fun.

And the best thing, I hear every day? “I love you!”

Kiss the Girl

Riley’s dance showcase as part of the Heidi Knight School of Dance was last night. She did fantastic, and the production is first-class professional. It was incredible the number and talent of the dancers. We were all so proud of her!

Riley and her six Little Mermaid classmates pranced onto the stage in front of about 2,000 at the VBC and did their routine to “Kiss the Girl” like it was no big deal. She knew the dance better than her teacher, who told me as much after the show. She didn’t miss a beat or a step … not bad for a deaf girl! Those cochlear implants really work.

Here are a few pics from the dress rehearsal (complete with curlers) and after the show.




You throw like a girl

Saturday at Riley’s softball practice, a different coach was running things because our regular coach was out of town.

As he was hitting grounders to the girls, this other dad walks by and jokingly says, “That guy in the red shirt throws like a girl,” and our coach turned around and tossed the ball at the fence where the other guy was.

First of all, what a STUPID thing to say in front of a team of 7- and 8-year-old GIRLS! Most of them can throw and throw well. And those who can’t are just learning.

Second, why does that putdown have to reference a girl? Why can’t they say, “You throw like a sissy”?

Third, I wanted to say, “And you sound like an idiot.” But I didn’t. I did say fairly loud, “Nothing wrong with throwing like a girl.”

It bothered me mostly because the guy saying it was obviously a dad (probably to boys) and the guy taking offense is a dad to GIRLS. I wish he’d said, “Yeah, and I’ll throw you out at the plate anytime.”

Girls are trashed for “throwing like girls,” and they’re trashed for being tomboys. We just can’t win.

That’s why I tell Riley she can play with Barbies and trucks. And there’s nothing wrong with a boy playing with trucks and dolls, either. They’ve got to learn how to care for children somewhere, right? 😉

Try to hit off this girl: Olympic gold medalist Jennie Finch

Game On: Running Matters

If you’re at Dick’s Sporting Goods anytime soon, grab a copy of Game On and read my article “Running Matters.” It’s about how running is good for your mind and body. And it’s my first national article.

It’s not online, but I will scan it soon and upload it to my here. In the meantime, I’ve landed two more national assignments … turned one in Friday and another is due this Friday. I’m also working on two features for Birmingham Parent.

My latest story in Birmingham Parent is about siblings of children with special needs. It’s about how to make sure siblings get adequate time with their parents, too.

My story on Baby Myths is featured in Cincinnati Family, MetroFamily, Montana Parent and Nashville Parent this month.

Also, my piece on plastic surgery and teens is online at Charlotte Parent.

If you haven’t checked in with Sound Check Mama lately, please do. Lots of interesting stuff going on there.

And if you like baseball, visit Braving the Diamond, my blog at MLBlogs.com. I started it as a way to get back into Major League Baseball and keep up with the Atlanta Braves.

Remember When

Five years ago today, Riley heard our voices for the first time. One of these days I’m going to upload the video of her activation and make everyone else cry with me. 🙂

After her implant was turned on and we were given a lesson in our to work all the buttons and accessories (lots!), we went to eat lunch at O’Charley’s.

Which reminds me of a project I need to get started on: scanning in all the surgery and activation photos and uploading the videos.

Anyway, Happy Hearing Anniversary, Riley!! I love you, my girl, and I am so very proud of how hard you’ve worked and how far you’ve come.




It’s My Life

From world of silence to high-tech hearing
Tuesday, May 20, 2008
By Tiffani Hill-Patterson
The Huntsville Times

Complete silence. Can you imagine? Turn off the television. You probably can still hear the refrigerator hum in the kitchen.

Insert earplugs. You can still hear your own breathing.

But for 12,000 children born deaf each year in the United States, there are no lullabies, no birds singing, no comfort from mommy’s voice.

Just silence.

Silence was the world of our daughter, Riley, until she was nearly 2 years old.

We had suspected something for a couple of months, but we preferred to embrace denial.

How could anything be wrong with our sweet baby? Family and friends said there was no way she could be deaf. She turned her head toward us, she responded appropriately, and she babbled.

She was so good at feeling vibrations and reading our faces that she had all of us fooled.

May 7, 2003, changed our lives.

Grief, guilt and anger

“She’s never heard your voices. She doesn’t even know her name.”

The audiologist’s words knocked the wind out of us. We were devastated and in shock. Even though we had concerns, we weren’t ready for the diagnosis. Our perfect little girl was deaf – severe to profound hearing loss.

Our hearts were crushed. It was like the child we thought was ours didn’t exist.

Grief hit us hard. All the songs we had sung, all the “I love yous” we had whispered – she had heard none of them. That was the hardest thing to take. Did she even know we loved her?

Then came the guilt. How could we not know that our child was deaf? We knew people wondered that about us, and some even said it out loud. We just didn’t know. How could this have happened? No one in our family was deaf. Was it something I had done while I was pregnant? Had we done something wrong after she was born? Why had we waited so long?

The anger was next. Why had the nurses dismissed the second failed hearing test so easily? Why hadn’t her pediatrician noticed anything? C’mon! A little help here, please?

Finally acceptance came. We channeled our guilt and anger into providing Riley whatever she needed to hear and communicate. We set up appointments with a geneticist, an Auditory-Verbal speech therapist, an Early Intervention specialist, our insurance representative and an ENT surgeon. The time for tears was over. We looked ahead to Riley’s future with our chins up and shoulders squared.

Cochlear miracle
Two weeks after her diagnosis, Riley was fitted with high-powered digital hearing aids, and she started A-V therapy, which teaches children to listen and talk.

We also met with a geneticist at the University of Alabama at Birmingham, who told us after testing that Riley’s hearing loss was caused by the Connexin 26 gene. Both my husband and I carry mutations of the recessive gene. Finding out the cause was a relief, and knowing it wasn’t our fault freed us from a lot of our guilt.

After seeing that the hearing aids were not powerful enough, we began the process of getting a cochlear implant. On Sept. 16, 2003, Dr. Audie Woolley at Children’s Hospital in Birmingham did the surgery. On Oct. 9, 2003, our little girl heard our voices for the first time.

I wish you could see the video: She turned bright red, looked around, found us and started clapping and laughing. It was the most amazing thing I’ve ever witnessed.

Five years later, Riley has two cochlear implants and is about to finish kindergarten. She understands almost everything, and her language skills are catching up with normal-hearing peers. She plays soccer and softball, loves playing with other kids and loves to read.

Our daughter is a normal 6-year-old – she just has some colorful ear accessories.

Tiffani Hill-Patterson is a Times copy editor. Reach her at tiffani.patterson@ htimes.com.

© 2008 The Huntsville Times
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