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?

How do you map an ear?

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

I’ve previously talked about taking Riley to her mapping appointment at the HEAR Center. You’re probably wondering what that means. Mapping means programming. It’s a little like upgrading the software on your computer. Sometimes your computer slows down or needs a boost to do some new processes.

Same thing with the CI processors, which are the pink and blue devices you see Riley wearing. They contain tiny computers that need occasional updates.

The cochlear implant processors have to be readjusted at various intervals depending on how long a child has worn them. For example, when Riley first got her CIs, she had to get them mapped every month for the first couple of months. Then every three months for a couple of years. After nearly seven years, unless she’s having trouble with the CI, Riley’s map is updated every six months.

The audiologist hooks the processors to her computer and updates the software on them. This mapping sets the devices’ electrode stimulation levels in Riley’s cochlea so she can detect soft and loud sounds comfortably.

Over time, Riley will adapt to the settings. What was once too loud might become too soft as her brain’s auditory center gets used to the sounds. Then we’ll go back for another mapping session.

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.

Bilateral anniversary

Today is the first anniversary of Riley going bilateral. We sent Dr. Woolley a photo and note thanking him for helping her hear. He sent a nice one back. I also sent a card to Riley at school to mark the day.

I can’t believe it’s already been a year. The left CI has made such a difference in her speech recognition and expressive language skills. Yes, we still have work to do, but she catches on so much faster now. Why, it’s like having two ears! (almost)

And even though you’ve probably seen these photos before, I’m posting them again. 🙂

Leaving for the hotel the day before surgery

Family Portrait while waiting to go to OR

Just after surgery: I want a drink

Family Portrait after surgery

Our sleepy girl

Comforted by her Disney Princesses

“I’m going home, back to the place where I belong …”

At last, home in the big bed

We have a photo where I’m holding a days old Riley like this; she wanted to re-enact it, so we did.

Artwork while in recovery

My folks brought her the Barbie Big Wheel that was supposed to be a Christmas present, but because there was trouble putting it together it was delayed until now. 🙂

Taking a break from cruising on her Big Wheel in her Dorothy the Dinosaur hat, 5 days after surgery.

Thanks for reading … again!

Smaller incisions, less shaving


The first two photos were taken after Riley’s first cochlear implant surgery (right ear) on September 16, 2003. The first picture shows the incision: a large cut shaped like a question mark. The red ribbon covers a bit of the cut. The second picture shows the first earpiece and coil, which were connected to the Sprint in the third photo.

The fourth photo is from her surgery (left ear) on April 16, 2007. The cut is much smaller: an “S” shape. Dr. Woolley left more hair on the top layer this time, too.

I need to snap a photo of Riley’s left ear with her Freedom and add it later.

Heartsick

I know it’s not doing me any good to go back and relive the “whys” and “whens” and “ifs,” but I’m doing it anyway and what I just found breaks my heart.

Nov. 5, 2001 … She wasn’t even a month old yet and we’d taken her for a follow-up hearing test because she failed the newborn test. I wrote in my calendar that year “Riley has to have another hearing test.”

“Riley has to have another hearing test.”

“Riley has to have another hearing test.”

What the … ? Why didn’t we get another one? Did we ever even think about it again? Oh my Lord. What have we done? Why did we wait? I truly don’t remember the hospital nurses telling us to get another test – I remember them telling us it was probably nothing and not to worry. Or maybe that was my way of coping after we did get the diagnosis, shifting the blame elsewhere? Because it’s just too painful to think I could’ve caused Riley to wait needlessly.

We could’ve known and got her treatment so early, instead of letting her go 18 months without hearing a sound. Eighteen months!!! She could’ve been fitted for hearing aids then and had her first cochlear implant surgery at 9-12 months. She wouldn’t have lost over a year of language input! My baby … I’m so, so sorry. How could I have forgotten another hearing test? How?

A week later she had a check-up with her pediatrician, who declared, “She’s doing great.”

And she was, except she couldn’t hear.

I write this not to make anyone feel sorry for us – most anyone would be angry with us for being so stupid and naive. I’m angry at myself. But I’m writing this for anyone else who is in the same situation.

If your baby fails a hearing screening twice, MAKE AN AUDIOLOGIST APPOINTMENT IMMEDIATELY! Don’t wait. You’ll either find that your baby is OK, or you’ll be able to start treatment sooner and your baby will have a much better, much easier time learning to communicate with spoken language.

I haven’t told anyone else about this, but I wanted to share it here in case anyone needed some prodding to make the appointment.

Keep listening …

One Small Voice from Tiffani on Vimeo.

Dream Come True

One of the dreams I’ve had for Riley since she was born came true Saturday. She played her first softball game. I’ve been waiting 6 years for this day, and it was worth it. Seeing her swinging that bat, running the bases and stopping and throwing the ball made my heart so full. And except for a little trouble with the batting helmet, we had no problems with her cochlear implants, and she was able to hear the coaches telling her when to run and when to stop.

I started softball when I was 6 and played for 20 straight years, until I started working nights as a sportswriter. My mom and dad both played; heck, my little brother and I practically grew up on a ballfield. While they played on the field, we played behind the bleachers, using a wadded up paper cup as ball and our hands as the bat. My husband played baseball for years, too, and we both ended up with college scholarships.

Yeah, it’s a little selfish that I want her to play because I get such enjoyment from it, but I have other reasons. It’s healthy, it will keep her out of trouble and it will help her make friends and give her confidence.

The only trouble we had with her Freedoms was when she tried to put on her batting helmet the first couple of times. She got nervous and rushed and kept knocking the magnet coil off. Thankfully, on her third at-bat, she had figured out the way to do it and was ready to go.

This is her first at-bat; she went 3-for-3 in an 18-17 loss. In T-ball, each team bats until it scores six runs or makes three outs.

Here’s Riley taking third on a basehit by a teammate. She didn’t score this inning, she did after her final at-bat.

Here’s Papa making an emergency glove repair in the second or third inning. The lace along the thumb came out and had to be restrung and tightened. It worked because Riley stopped a ball later in the game when she was playing centerfield.

After the game she said, “The Pink Panthers didn’t win, but maybe next time.” Except for the nervousness over the helmet with her first two at-bats, everything went smoothly. She knew where to run, how to stop the ball and where to throw it. It was an awesome experience. Even if she decides she doesn’t want to play again, I will treasure this season with my little softballer. Go, #17! Go, Pink Panthers!
http://www.blogger.com/img/videoplayer.swf?videoUrl=http%3A%2F%2Fv1.nonxt3.googlevideo.com%2Fvideoplayback%3Fid%3Dc55e452e8e949fdf%26itag%3D5%26begin%3D0%26len%3D86400000%26app%3Dblogger%26et%3Dplay%26el%3DEMBEDDED%26ip%3D0.0.0.0%26ipbits%3D0%26expire%3D1266314959%26sparams%3Did%252Citag%252Cip%252Cipbits%252Cexpire%26signature%3D32F0A3CD3DF209963ADBC684DE50B36A4200416B.409D134BAA305BF79F897F4183608F05D53E3CA8%26key%3Dck1&nogvlm=1&thumbnailUrl=http%3A%2F%2Fvideo.google.com%2FThumbnailServer2%3Fapp%3Dblogger%26contentid%3Dc55e452e8e949fdf%26offsetms%3D5000%26itag%3Dw320%26sigh%3DbMtmsq9S5ElJZMBQ-YxC1AC6dX0&messagesUrl=video.google.com%2FFlashUiStrings.xlb%3Fframe%3Dflashstrings%26hl%3Den

Sound Check Mama

Interesting name for a blog, isn’t it? I chose it for two reasons: because we have to check that Riley is hearing with her implants every day and because we love music.

We use the Ling 6 Sounds to make sure her implants are working properly and that she is hearing all the sounds she needs to to understand what’s being said. Daniel Ling, an expert in audiology and hearing loss, developed the system.

Ling 6
ah
ee
ooh
sh
sss
mmm

Of course, sound check also refers to what musicians do before a show to make sure their instruments, amps, microphones, speakers and voices work properly.