Sound Check Mama

I can do it all. Sometimes …

Category Archives: cochlear implant

Jingle, jingle, jingle

Imagine the sounds of the Christmas season: the ripping of wrapping paper, the squeal of an excited child, jingle bells, the whispers to Santa, and your favorite Christmas carol.

Now imagine the holidays without those sounds. That’s how it was for Riley until she turned 2. With the help of cochlear implants and years of auditory-verbal therapy, she is able to enjoy all the sounds of the season just like any kid with typical hearing, including me yelling, “Riley! Stop shaking your presents!”

One of Riley’s favorite Christmas sounds is a DVD by The Wiggles. The kiddie band was one of the first things she heard after her implants were activated. “Mama, I don’t care how old I get, ” she says, “I’ll always love The Wiggles.”  The photo at right shows her gettin’ wiggly during her first holiday to hear. Pretty special, right?

Since then she has sung in numerous school Christmas programs and played three roles in her third-grade-class production of “A Christmas Carol.” Not bad for a girl who, when she was born, couldn’t hear a jet engine if you held her next to it.

When all the noise starts getting to you, stop and think what it’d be like if you couldn’t hear at all. No kids singing “Away in a Manger,” no friends laughing, no voice saying “I love you.” Then be grateful for the sounds. And take some ibuprofen and a nap and get on with your holiday-ing.

Happy Birthday, Riley!

Riley turned 10 on Monday! I cannot believe I have a 10-year-old. :-)

She celebrated with a sleepover (the five girls were loud and fun), a Justin Bieber cake, pizza, and ice cream. Her dad and I got her an iPod touch, and she is thrilled. She has already downloaded Angry Birds and Ninja Fruit. And she and I are having a blast with FaceTime. It’s a cool feature from Apple, and I look forward to using it more. She thinks it’s hilarious to FaceTime me when she’s in the kitchen and I’m in the living room.

I love that she is technologically savvy but not too savvy. We keep a close eye on what she sees and hears online and what she plays. She doesn’t know any passwords to buy or download anything. And it’ll be that way for a long time.

When Riley was born, she made my life infinitely better, and my love for her is one that can never be measured.

 

 

Hey, y’all! That’s Southern for welcome

I wish some of you folks who’ve visited my blog would stop in and say hi. I’m fascinated by all the different places that show up in my stats, like these: Brooklyn, NY
Birmingham, AL
Oklahoma City
Fort Worth
Gainesville
Atlanta
Wichita
Cincinnati
Ontario
Stockholm
Leasburg, Missouri
Sweden
Rhode Island
Netherlands
Rome, Italy
Allentown
Little Rock
Manchester, England

Most people seem to be reading about cochlear implants or Joey McIntyre’s work to raise awareness for hearing loss. A few are checking out the music posts.

No matter what you’re reading here, I appreciate your time. And I’d love if you’d introduce yourself, tell me how you found my blog, and let me know if you have any questions. Thanks!

AV therapy, softball, dance, Bama basketball

Since Riley’s therapy was cut back to every other week, we’ve been focusing on getting her to think about graduating from auditory-verbal. She has two goals right now:

1. Look at the person who’s talking
and the person you’re talking to.
2. Talk in complete sentences.

She’s doing pretty well with those two objectives, but I still have to prompt her occasionally.

Our therapist completed vocabulary testing last week and to everyone’s surprise Riley scored at or above her chronological age! We think it’s the first time she has hit or surpassed her “real” age and not her hearing age. She is on the right path.

We are working on synonyms and antonyms, idioms, context clues and inferences – important things heading into fourth grade next year. Riley is also supposed to be making notes of words she doesn’t know when comes across them in her reading.

Report cards come home Thursday, so that will tell the tale. Her weekly grades are mostly A’s and B’s, with a smattering of C’s and a D here and there. No more F’s, though. The lower grades seem to come whenever new material is introduced, which is why preteaching is so important. And, obviously, I haven’t been doing enough of that lately.

Also, her class is reviewing for state testing in math right now. Third-graders take the SAT (I think that’s the name), and I’m anxious to see how she does. Geometry, fractions and decimals have all been part of the curriculum this year.

Dance class is getting busier … she’s taking only acrobatics this year, but costumes are coming soon and picture day is in two weeks. Riley is good at acro; she’s almost got the back walkover and a one-hand cartwheel is a piece of cake. Next year, I’ll probably let her go back to taking two or three classes because dance is something she excels at.

Softball is starting next week; several practices have been rained out, so her team this year (all new to her except for two) will be rough around the edges. I will brag a bit about Riley, though. She is one of the fastest and has one of the strongest arms on the team. Her throwing is much improved.

The divorce was final last month, and I’m selling the house. I’m glad it is over, and we can move forward.

Oh, and, Roll Tide! Basketball season was fun, but I think the Tide got hosed by being left out of the NCAA Tournament. Winning the NIT would be nice, though. Go, Bama!

New resource: Hearing Families

Efrat Schorr, a developmental psychologist, launched the website Hearing Families early this year. Dr. Schorr has first-hand experience with hearing loss. “As a mother of a child with hearing loss, there were so many questions I had about my son’s social and emotional development and I had nowhere to turn. I decided to start this website to share information that is hard to find.”

The site covers everything from newly diagnosed children to understanding teens to supporting siblings of kids with hearing loss. Dr. Schorr welcomes questions and suggestions from parents, too.

Her Top 10 List is packed with gems to remember, especially this one: “YOU are your child’s most persuasive advocates – your child is counting on you.”

Check it out; you might discover something you never knew.

Good progress

Some good news about Riley and her auditory-verbal therapy … our therapist cut us back to every other week instead of every week! After seven years of weekly sessions (give or take holidays and illnesses), it’s nice that she’s made so much progress that we can go less often.

Her expressive vocabulary is better, her sentences are better and her conversation skills are better. I think a lot has to do with her social life, too. She plays softball and dances and has lots of friends who treat her like a “normal” kid. Her teachers and coaches expect the same out of her as they do other kids. She has accommodations at school, but she’s still expected to do everything.

Riley’s teacher makes her use correct sentence structure even when she knows what Riley is trying to say. I do the same at home. Her coaches often ask her for clarification, too. Everyone is working together to get the best out of Riley, and it’s paying off.

Third-grade math is a bit of a struggle, but she’s catching on. Slowly. This carrying the one and taking away the one and multiplication is tough. She’ll get three or four problems right, then miss one or two. One thing I’ve done to help her is have her tell me how to solve the problem. We go column by column and she tells me what to do and what numbers to write. Then we check our work with the calculator. That works pretty well.

She has two projects to do over fall break: a book report and a multiplication model. She hasn’t picked her book yet, but she’s finished her model using candy to illustrate 2×9=18. That’s my girl! Anything hands-on she loves and will get cracking on it right away. She did the same with her “All About Me” poster at the beginning of school. Finished it the day it was assigned.

She makes my life beautiful.

Show me your hearing

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.

Disclosure: Riley wore Phonak hearing aids before she received her cochlear implants, but that was in 2003, way before this contest was even a twinkle in the marketing department’s eyes. Heck, before I replied to the email, they didn’t even know I had a child with hearing loss.

Dance the night away

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

Softball

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.

A change has come

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!

No longer on duty

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!

Joey McIntyre shares story of his son’s hearing loss

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?