Music + Sports + Writing = Therapy
cochlear implant
Show me your hearing
Jun 30th
So I got this email the other day from Jennifer with the Hear the World initiative about a photography contest, sponsored by Phonak, called “Show Us Your Hearing.” The project wants to see you in a “conscious pose of hearing” (hand cupped behind your ear) and aims to raise awareness of hearing loss, which affects 16 percent of the world.
Each year in the United States alone, 12,000 babies are born with hearing loss, and the American Academy of Otolaryngology-Head and Neck Surgery reports that 1.3 million children under age 3 have a hearing impairment.
Clearly, hearing loss affects every aspect of a child’s life, from academics to developmental to social issues. Most of you know our story: Our daughter, Riley, was diagnosed with profound deafness when she was around 18 months old. We were devastated, but with education and information we made the right decision for our family. Just before she turned 2, she had cochlear implant surgery and now at age 8, she is a bilateral CI user headed to the third grade, an all-star softball player and an incredible dancer.
Some big names in music are part of this initiative including Annie Lennox, Rod Stewart, Common, Billy Idol, Harry Belafonte, Joss Stone, Lenny Kravitz. Singer-songwriter and photographer Bryan Adams captured each ambassador in the “hearing pose,” which “demonstrates the importance of being aware of your hearing at every age.”
Check out the Hear the World photographs—including ones of Annie Lennox, Peter Gabriel, Moby, and Amy Winehouse.
Now the initiative wants you to submit your own photo! Details are below.
Show Us Your Hearing
Photography Competition
WHEN IS THE CONTEST DEADLINE? Monday, July 12th
HOW DO I ENTER? To enter, follow these 5 easy steps:
1. Register: You will receive an email registration confirmation from Hear the World. If you don’t receive an email, please check your Junk Mail folder.
2. Visit: Click the “enter the contest” button, and enter the entry form.
3. Upload a photograph of you, a friend, or family member in the “Conscious Pose of Hearing.” The photo must be high res (300dpi), between 1MB – 3MB.
4. Give your photograph a title and provide a description of up to 100 words describing the importance of being aware of your hearing at every age.
5. Click “Send.” Your Entry will not be officially entered into the Competition unless you click the final Send button and receive a confirmation screen that states that your Entry was accepted.
WHY SHOULD I ENTER?
- To take a moment to think about your sense of hearing and the sounds you are grateful to hear every day.
- To support the Hear the World initiative, which is dedicated to raising awareness about the importance of hearing, while also educating the public about the consequences of hearing loss and the available solutions.
- For a chance to win a Polaroid 300 Instant Camera and for a chance to see your photograph published in the award-winning Hear the World magazine.
WHAT ARE THE JUDGES LOOKING FOR?
- Most visually appealing–50%
- Originality–30%
- 100 word description–10%
- Self-explanatory–10%
HOW AND WHEN WILL THE GRAND PRIZE WINNER BE DETERMINED?
1. The public will vote on their favorite photo between July 13 – August 3.
2. The top five entries that receive the most votes will be judged by a panel of judges between August 4 – August 10.
3. The grand prize winner will be announced on August 16 on the Hear the World website. Winners will be notified by phone and email.
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Dance the night away
May 29th
Riley’s dance recital was two nights last week. Her first night was ballet; the second night was acrobatics and jazz. She did wonderfully–she knew where everyone was supposed to be, and she helped get them there. She loves dancing and it shows! We are so proud of her and everything she has accomplished in her two years on stage.
Getting ready backstage before One Dance
Riley waves to her adoring public after the first-night finale
Waiting her turn for her one-handed cartwheel during Cotton-Eyed Joe
Backstage getting ready for Jailhouse Rock
Proud parents with our dancer girl
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Softball
May 8th
The first and third photos of Riley were taken by my friend Melissa; the middle one is mine with some effects done in Photoshop Mobile. We’re about to head to the field for a doubleheader. Go, Senators!
Right now, the girls are in second place, with four games to go. The tournament starts May 17, which is also one of Riley’s dress rehearsal days for dance. But that’s a whole different story.
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A change has come
Apr 19th
I haven’t blogged about this yet, but I love my new job (part time) as department secretary at Huntsville Hospital Pediatric Therapy – I feel like I’m making a difference for the children we see, and I feel like I’m giving back a little of what so many have helped us with during Riley’s journey to hearing.
The clinic sees patients for speech therapy, physical therapy, occupational therapy and now audiology. It’s exciting that families no longer have to drive to Birmingham or Nashville to have their child’s hearing tested or their cochlear implants mapped or their hearing aids adjusted. All that is available in Huntsville now.
It took a lot of hard work from the therapists, the audiologist, the volunteers, the hospital’s foundation, and many donors to help get the audiology program started. And it’s so worth it.
I’m learning so much about how these services really benefit these kids. I know first-hand how great auditory-verbal therapy is. Now I’m learning the benefits of OT. And about how you do PT with a 3-month-old. These therapy disciplines are fascinating.
Another cool thing? I wear scrubs to work. No futzing with dress pants and shoes. Or trying to find a shirt that fits. Or that isn’t too wrinkled. Just toss on the scrubs and go. I’m working on my color combos: Today it was turquoise and red; other days it’s been hot pink and navy.
I’m still writing, too. In fact, I’m working on a story right now for a national publication and another for a regional parenting magazine. And, of course, I’m still writing for VisitSouth.com’s Huntsville site. Stop by and leave me a comment there, too. The more links and visits and shares and tweets and posts I get the better.
In case you’re wondering, I took a buyout from the newspaper in January and was set to be a full-time writer when this opportunity at the hospital came along. Sometimes things have a way of working out, when the time is right. The good Lord knows what He is doing.
I’m loving my new schedule, and I’ve almost grown accustomed to getting up early. I’m still working on getting to bed early, as you can see. It’s nearly 11 p.m. and I’m banging away on this keyboard!
So that’s my update for now. Things are going well, and we’re enjoying life!
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No longer on duty
Apr 15th
Riley gets a hit and heads for first
After two years of being dugout mom for Riley’s softball team, I’m not this year. And it’s working out great! Riley is becoming more independent and taking more responsibility for herself.
I don’t have to worry about her getting her helmet or bat or glove or mask. Or getting her “skull wrap” on to keep her CI processors in place under her batting helmet. She does it all on her own. I can relax and watch the game instead of fussing to get her and the other girls ready to bat. Or hustle to get them back on the field for defense.
This year’s dugout/team mom is waaaay more organized than I am! She had the game schedule, snack duties, concession duties and picture day all set up before you could say “Go, Senators!” She’s doing a fantastic job.
The girls are 5-1, and they’ve been playing so well lately. Everyone’s hitting, and they’re making good, solid plays on defense. At times they have a tendency to throw the ball around, but that just comes from being 7- and 8-year-olds and getting a little too excited sometimes.
Ryan grooves a pitch to one of our hitters.
- Riley makes the throw to first for the out.
Ryan is pitching this year, and he’s doing a good job. He’s learning where all the girls like to swing, and they are connecting. And crushing it.
Riley’s learned a lot about playing defense this year, and she’s getting comfortable in the outfield and at second base.
It’s a joy to see her having fun and learning and being physical. I hope her love of activity lasts a lifetime.
And my new job allows me to go to the games and hang out afterward, instead of rushing back to edit the newspaper. It’s awesome having a normal (well, relatively speaking) life now that I’m not working nights!
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Joey McIntyre shares story of his son’s hearing loss
Mar 28th
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 share 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.
Riley got hearing aids when she was 19 months old.
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.
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?
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Playing ball when you’re deaf
Mar 3rd
She's come a long way since she got her first glove in 2003.
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.
Ryan might pitch, if he can work out his schedule so he can be there e
nough. It won’t be fair for him to start as the pitcher and have the girls get used to him then have to rotate someone else in.
We’re all ready for spring and softball and warm weather.
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How do you map an ear?
Feb 24th
Audiologist Emily Rector checks the connection between Riley's CI processor and the computer.
Yesterday I 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.
Riley wears her CIs everywhere but in the water and to sleep
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.
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Focusing on my subjects
Feb 22nd
Here’s the blogging schedule I’m going to try to keep so I’ll have some focus. If something comes up, I’ll be flexible even if it doesn’t particularly fit the day. Maybe this will help me be more organized and consistent.
Media Mondays (pop culture, writing)
Worth it Wednesdays (cochlear implants/hearing loss/family)
Fitness Fridays (sports, workouts)
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Coping with a child’s hearing loss
Feb 19th
Ryan, Riley, Tiff at Lullabies on the Links benefit golf tournament
ADVANCE for Audiologists magazine featured my family’s story as part of a series on Maintaining Patient Dignity. The piece is called The Coping Parent:
“In many cases, the parents of hearing-impaired children may need more counseling from their audiologists than the patients themselves.”
The article talks about ways audiologists can make it easier for parents to understand and deal with a diagnosis of hearing loss. And do it without belittling or being condescending toward parents.
Frank Visco, the assistant editor, did a wonderful job telling our story and putting together a slideshow of Riley. He found us through my post Delivering the Diagnosis: Your Child Is Deaf. Please visit the magazine’s site and leave a comment if you enjoyed the article.
Have you ever had a doctor or nurse make you feel like dumb like our first ENT did? How did you handle it? What else can doctors do to help patients’ families cope? Leave me a comment. Thanks!
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