Joey McIntyre shares story of his son’s hearing loss

CIs and softball
Riley waits for her snack after the softball game. See her blue and pink CIs?

Joey McIntyre of New Kids on the Block and Dancing with the Stars fame shares his family’s story of hearing loss in the latest issue of People magazine. His youngest son, 3-month-old Rhys, has been diagnosed with a severe loss and is wearing hearing aids. According to the article, the family is working with an auditory-verbal therapist and might consider cochlear implants.

Many of the comments on the article are insulting, rude, and just plain ignorant. While I have no problem with a family wanting to immerse their hearing-impaired child in Deaf culture, I do have a problem with those same people spreading lies and accusing other families of abuse because they made a different choice.

I’m going to address 20 things posted in the article’s comments and clear up a few misconceptions about cochlear implants. Feel free to ask questions in the comments section or share this post with others.

1. Cochlear implants DO NOT require additional surgeries as a child grows. The only reason additional surgery would be needed is if the device failed. CIs have a 1% failure rate.

2. Cochlear implants ARE NOT implanted into the brain. It IS NOT brain surgery.

3. If parents want their child to use spoken language, they CANNOT WAIT until the child is old enough to “make the decision for himself.” Most language learning occurs before the age of 3, so waiting would put the child at a terrible disadvantage.

4. Sign language is great, if a family wants to learn it. My family, for instance, is HUGE. I didn’t expect all 100 of them to learn ASL. Even if they wanted to, it would be nearly impossible, and Riley would’ve had no way to communicate with cousins, great aunts, and I didn’t want that.

5. My daughter knows a few signs, for those times when she doesn’t wear her CI processors, but she doesn’t “rely on” ASL and doesn’t need to.

6. Speech is available at birth. How do you think typically hearing children learn language? It seems that Rhys is benefiting from his hearing aids, so using spoken language is appropriate.

7. The implant is NOT DRILLED into the skull, like a screw is drilled into a piece of wood. A pocket for the implant is carved into the skull and a small hole is drilled into the mastoid bone so that the electrode array can be inserted into the cochlea. Read more on cochlear implant surgery at Tampa Bay Hearing and Balance Center.

8. Cochlear implants don’t “fix” hearing and don’t claim to. They offer users access to sound. Just like you have to learn to speak, you also have to learn to hear.

9. AG Bell is a proponent of listening and spoken language, but that doesn’t mean the organization is against sign language. It’s not either/or.

10. Auditory-Verbal Therapy focuses on teaching a child to use her hearing and learn to speak. It DOES NOT “forbid” all gestures; in fact, a hand cue is used during therapy. It signals the child to listen.

11. If deafness is not a disability, why do so many Deaf people use hearing aids? What are you trying to “fix”?

12. Riley’s CIs don’t hurt when she puts them on.

13. Riley is a special-needs child. Any child who has an IEP or who has special accommodations at school is a special-needs child. It is not a bad thing.

14. Riley’s CIs help her hear, but she is and will always be deaf.

15 A deaf child DOES NOT belong to the Deaf culture. She belongs to her parents.

16. Riley’s hearing aids and cochlear implants and speech therapy ARE COVERED by insurance.

17. You CAN have X-rays if you have CIs. Riley has had them done at the dentist.

From the high dive
Jumping from the high dive into 15 feet of water was not a problem for her implants.

18. You CAN swim if you have CIs (you just take off the processors.) No, you can’t do deepwater diving, but how many people do you know who are deepwater divers?

19. Children with cochlear implants have a quality of life equal to that of hearing peers.

20. I respect Deaf families wanting to immerse their child in the Deaf culture. Why can’t they respect my wanting to immerse my child in the hearing culture?

Losing a pet is hard for an 8-year-old

December has been a tough month: Daddy is back in the hospital with a serious infection, and he is scheduled for major surgeries Wednesday. My grandmother fell for the third time since summer and is now in a nursing home. And last week, we had to let Carlo, our 11-year-old lab mix, go to a better place. Ryan and Riley had taken him to an emergency vet a week earlier because he was eating very little. They came back with a diagnosis of fungal pneumonia and prescriptions for pain and antibiotics.

The meds did nothing, so our regular vet came to the house to check on him. Carlo was laboring to breathe, could hardly walk and completely stopped eating and drinking. Our vet listened to him breathe and checked him out and said it was either fungal pneumonia or lung cancer. We had already discussed a plan and once we had confirmation that we could do nothing more, we made the decision. And it was hard. Riley gave Carlo a hug, and we sent her to our neighbor’s. Ryan and I stayed with him until the end, crying and talking to him.

Carlo was the sweetest, goofiest dog. When it came to eating, he was like a vacuum. He loved to run around in the backyard, and he loved our first dog and his mentor, Eboni, whom we lost several years ago when Riley was very little. And he loved us.

I miss him snuffling against the back door when he wanted in. I miss his barks when we pulled into the driveway. I miss him looking at me with those big eyes when he wanted to go outside.

That night, Riley asked when the angels were coming to get Carlo and if we were going to put his body under his tree. She asked if he was going to play with Eb and Bonnie (Nanny’s late dog). She asked if he was going swimming. We said yes to all. We tried to explain about his spirit, but that was fruitless. We didn’t have the words to get it right. She drew a card for Carlo and Eb and took it to school and all her classmates signed it. Isn’t that the sweetest thing you’ve ever heard?

The photos below show a 20-month-old Riley checking out Eboni (red collar) and Carlo; Ryan helping Riley get to know Carlo a little better; Carlo hanging out on the patio; and Carlo “opening” his Christmas present last year. In the drawings, Riley encourages Carlo to go see Eboni in heaven and marks Carlo’s final resting spot – under his favorite tree in our backyard.



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. 🙂

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.




Bilateral CI daughter sings

Nothing is sweeter than hearing my bilateral CI daughter singing The Chipmunk Song and Jingle Bell Rock. Especially considering there was a time when we weren’t sure she’d even talk.

Yeah, she misses and messes up a few words, but when I was 7, I didn’t get “snowing and blowing up bushels of fun” either. She also loves to belt out We Wish You a Merry Christmas and Jingle Bells. We’re still working on Silent Night and Away in a Manger.

And, thanks to A Charlie Brown Christmas, she knows Hark! The Herald Angel Sings. And she sings it exactly as kids do in the cartoon: face upturned toward the heavens and mouth wide open!

This was her first Christmas to hear! She was 2 and loved everything, except Santa.

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
© 2008 al.com All Rights Reserved.