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?

Playing ball when you’re deaf

She’s come a long way since she got her first glove.

Riley’s had two softball practices with another set for Saturday. She’s paying better attention this year, but we still need to figure out a better way to communicate than just yelling at her. It’s hard for anyone to hear a coach yelling from the dugout during a game and even harder when you’re hearing impaired. That’s one reason we’re considering an FM system … so she can hear easily whether she’s on the field, in the classroom or out in the backyard.

Another family offered to let Riley try out the system their children no longer use, so I think a phone call is in order. Of course, the system will have to be tweaked to complement Riley’s hearing and programs, but we should get started on this soon.

The first two practices were COLD – the poor girls were bundled up so tightly they could barely move! And you know how much it hurts when you swing the bat and don’t hit the ball solidly. Ouch!

She batted right-handed the first practice and did OK, but she switched back to being a lefty the second day and did even better. I’m going to let her decide how she’s most comfortable at the plate. Lefty or righty, it’s her choice.

The coach worked her out at second base and Riley did really well for her first time on the field since May. Several of the other girls played throughout the fall and are also playing on a travel team during the community season, too. They’re getting a lot more reps, but Riley will catch up.

I’m the dugout mom again – keeping the batting order; making sure helmets, batting gloves and bats are where they’re supposed to be; helping the catcher get dressed; bandaging any scrapes or strawberries; and yelling for mom or dad if I can’t help. Basically, several moms are tag-teaming to take care of everything from uniforms to snacks to picture day to concession duty.

We’re all ready for spring and softball and warm weather.

Happy Birthday to Jon Bon Jovi

JBJ as seen through my 12x optical zoom lens and the big screen.

Today is my rock star fantasy’s birthday: JBJ is 48 and still rockin’.

Here’s a bit about how this love affair started:

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My journey into infatuation started in the mid-1980s. I was about 14 and just getting into MTV. Long hair, tight leather pants and ripped shirts were all the rage. And I’m not talking about the ladies.

One band surpassed all others in every way…music, looks, number of cans of Aqua Net … Bon Jovi was the baddest, the coolest and the hottest. To use the slang of the day, lead singer Jon was fine. And I was hooked.

As a teenager, I didn’t have the means to buy the albums or go to the concerts. I started my collection by obsessively listening to the Top 40 countdown shows on the radio, tape recorder at the ready. “Casey, would you stop talking over the intro!” I wore those cassettes out, playing “Livin’ on a Prayer” and “Bad Medicine” over and over and over.

I taped their videos, their appearances, anything I saw. I have no idea where those tapes are now, but I wish I could find them.

Yes, I changed the words to “I was born to your baby, you were born to be my man.” Yes, I imagined getting backstage and meeting Jon. (Get your minds out of the gutter – he was always a perfect gentleman. And back then I wasn’t as well educated as the kids are now.) Yes, I begged my mom to let me go to their concert in Huntsville just before I turned 16 … no dice.

Fifteen years later, just as I was about to turn 30, part of my fantasy was fulfilled. I was in the same building as Jon. Oh, my gosh … finally I got to see my Jersey boys in all their glory! And I was not disappointed.

It was like going back to high school…I felt like a schoolgirl, screaming and dancing and singing every song.

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I’ve seen Bon Jovi twice more since then, and unless I hit the jackpot, I doubt I’ll see them in April in Nashville. Ticket prices continue to climb, and I can’t justify $150 for a ticket stuck in the middle of an arena, where I can barely even see Jon, where my camera batteries will die five minutes into the show because I’m so far back I have to use the flash, where my photos will come out grainy because I have to shoot the big screen in order to even see Jon’s face, plus finding someone who can afford to go with me … and so on.

They’re pricing fans out of their shows, and it’s unfortunate. Even being a fan club member got me no perks … unless you consider $1,500 for a front-row ticket a perk. Sure it’d be a priceless experience, but sometimes the price is just too high.

The ever-increasing cost of seeing my favorite band live tends to dampen my love a bit. It’s disappointing that longtime fans have to spend so much money just to get decent seats. Meanwhile, bands and brokers and promoters are raking in the dough. It’s frustrating and unfair.

At least I’ll always have my fantasies.

As close as I’ll likely get to JBJ, and with a 12x optical zoom. Sigh. In Nashville, 2008.