Finding the right hearing solution for your child’s individual hearing loss can be difficult. While research is an important aspect of finding the right solution, we also believe there is power in stories and listening to what others have to say about their experience. Below we’ve brought together advice from eight parents who chose Ponto for their children.
Research, research, research
“I just want to make other people aware that there are other options. Check other resources to make sure you are making an informed decision right away. I quickly learned that no one is going to give me all the information I need.” – Caroline Mannato
“Research those (Facebook and other groups) boards. Don’t allow yourself to be saddled with one device because your audiologist doesn’t want to try something different. Fight for your children’s rights. Make sure you know you have options.” – Jillian Shelton
Social media groups can not only provide community but valuable information
“Look to social media support groups on Facebook, like this one and this one, to help research options and talk to adults and who are wearing the devices you are interested in. – Liz Anderson
“Ultimately, what helped was knowing there are people just like her out there.” – Theresa McCorkell
“The stories that adults and older children were telling were the stories we needed to hear.” – Erin Bullock
Trial other options
“Insist on trialing all options. It’s definitely worth the time it takes.” – Laurie Jarvis
“Try all your options, on your child and yourself, to help you make the most informed decision for your family.” – Heidi Jeffs
“If you have an audiologist who is not open to trying a different company, push or go elsewhere – just do your research.” – Liz Anderson
“Advocate, because our children need us.” – Shannon Gordon
Interested in learning more about these Ponto families? Click here: User Stories
Last week, Oticon Medical and Audiology Online hosted a webinar to provide an inside look into the perspective and decision-making process of parents with children who can benefit from bone anchored hearing systems.
The webinar featured Melissa Tumblin and Ann Pipes, both mothers to children who use bone anchored hearing systems. Melissa’s daughter Alyssa (Ally) wears the Oticon Medical Ponto Plus on a soft band. Ann’s son, Winslow, made his own decision to have surgery to wear his bilateral Ponto Pluses on abutments as implants. Melissa is also the Founder and Executive Director of Ear Community, and Ann is a founding member of Little Ears Hearing Center, a non-profit pediatric audiology clinic in Louisville, KY.
Melissa and Ann shared their stories, and in doing so the audience learned:
How to identify the parent consideration process in selecting a bone anchored hearing system for a child
The various types of FM systems used by most schools
How Ann and Melissa learned of bone anchored hearing systems and the products their children tried before the Ponto system
We were thrilled to meet Jodi and Eva last year at our advocacy conference in San Diego. Jodi is passionate and dedicated to helping other parents navigate what can be a very confusing time. Here, we hope to help extend the reach of Jodi’s valuable advice and experience.
By Jodi Sternoff
We found out Eva had Microtia/Atresia a few minutes after she was born. Our nurse summoned my husband over quietly to point out Eva’s ear was missing. It was a huge shock to us, and it scared us that the medical staff had not seen this before in the delivery room. They couldn’t even tell us what her condition was called. Looking for answers, my husband did some research that night on his Smartphone—that’s how we figured out Eva had Microtia/Atresia.
A week or so after we left the hospital we went to get her a BAER (Brain Stem Auditory Evoked Response). When we were at the appointment, nothing was ever mentioned about getting her a hearing aid. But, in our online research, we saw that some children who had Microtia/Atresia were wearing them. So, when we came back a few weeks later, we decided to ask about getting her a hearing aid. We were shocked to hear that this particular hospital did not offer BAHA’s for children with unilateral hearing loss. It did not make any sense to us, but we were told that we could go to another local hospital if we wanted to order one. We really appreciated that this hospital letting us know where we could order a BAHA for Eva. I called to make an appointment at the other hospital shortly after.
During the summer of 2011, we made Eva’s first appointment to learn about BAHA’s at Virginia Mason Medical Center in Seattle, Washington. We were given two different BAHA’s to try for a few days each. Eva was so young when we tried them. My husband and I had a hard time deciding which one to get, since Eva could not communicate this with us. We decided to go with Oticon Medical’s Ponto Pro because it seemed more comfortable for her head. I liked the material of the softband and the small shape of the device. The material of the softband was very important, because I knew she would be wearing this all the time and wanted something comfortable.
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When we first started doing research we found a few articles stating the importance of wearing a hearing aid when you have unilateral hearing loss. We read an article that said it is beneficial for children with unilateral hearing loss to wear a hearing aid starting in infancy. We read that the hearing aid will provide a more ‘balanced’ hearing and allow a child with unilateral hearing loss to pick up incidental language around them, thereby preventing some of the possible language delays. Waiting to amplify until school age (until the child is in kindergarten or older) may be too late, as their brain will take considerable time to learn how to use the information to localize sound and listen in noise.
Persistence Pays Off
Looking back, my husband I are so happy we decided to have Eva get her Ponto Pro at such a young age. We are also grateful for her speech therapy she receives from the Listen and Talk Program, (an early intervention program from birth to 3). Eva recently had some tests done because she is graduating from early intervention and will transition to our local school district for services. We are currently working with our school district to map out Eva’s plan, but her speech is so good she does not need speech therapy. She was tested between the age 2 years nine months and 2 years, 10 months. Her score for the “Receptive One-Word Picture Vocabulary Test (ROWPVT)” was at 3 years, 7 months. For the “Expressive One-Word Picture Vocabulary Test (EOWPVT)” she had the vocabulary of a child who was 3 years, 5 months. When she was tested for “Articulation and Phonology (CAAP)” her results were at 3 years, 11 months. We are just so pleased that we got her Ponto Pro at infancy and feel this has been a big factor in her speech development.
Getting Started Eva Aquatinted with her Ponto Pro
It was not easy at all to have her start wearing her Ponto Pro. We started out just having her wear it a few hours a day. As she got older and held her head upright it was a lot easier having her wear it more often. Since we had her wearing her Ponto Pro at such a young age she did not reject it as much as I hear older children do. Sometimes, when you start kids at an older age it is shocking to hear sound and they might refuse to wear it.
At the beginning of Eva’s toddler years she did like tearing it off. We had to teach her to not throw her hearing aid off whenever she felt like it. A lot of the time she would just chuck it when she was tired of wearing it. It took time to teach her to hand it to us when she was done rather than throwing it. I have had many times frantically searching for it when she threw it behind the couch, or in unreachable spots in the back seat of our SUV. I was nervous we would lose it so I had her wear the safety clip at all times. I found out early on the string was not strong enough and now use fishing wire to connect the safety clip.
There have been many times during Eva’s early stages of her wearing her Ponto Pro that she has taken it off. I wondered if she was tired, or if it was too loud for her, or if she just was taking it off because she just felt like it. If I thought she was tired or we were in a loud environment I did not make her wear it. However, if I thought she was just taking it off for no good reason I would put it back on and explain to her why I was doing that. Yes, I found myself doing this over and over again and it seemed tiresome doing this over and over again. However, now that she is a little older, I am proud to say that that she does wear it for long lengths of time. I am also finding at times my daughter is asking me to put on her Ponto Pro when she is not wearing it.
If you have tips for how you get your child to wear their device, please let us know in the comments below. Also, if you’re looking to speak with other parents, including Jodi, let us know in the comments section below and we can help make connections. You can also connect with community members on Facebook or Twitter.
Take one look at the thermometer or your neighbors dusting off their grills, and it’s pretty clear that summer is right around the corner. And, while it’s easy to recognize the sights, how often do we stop to appreciate the sounds of summer?
So, this summer we’re excited to announce our first annual essay contest—Sounds of Summer! Between the weekends of Memorial Dan and Labor Day, we’re giving you the opportunity to share your story with the Oticon Medical community, and win $500!
We get to hear a lot from you about how the Ponto has helped rebuild the soundtrack of your life through the stories you’ve shared with us on Facebook and Twitter. And, we have to admit, we just can’t get enough of them—we want to hear more from all of you!
So, start thinking! What’s your favorite sound of summer? Do the sounds of crickets on a warm summer night bring back fond memories? Or maybe the sound of a burger grilling in the back yard? How do you experience summer differently now that you have a Ponto?
Here’s everything you need to know about entering the contest:
How do I enter?
We’re going to try and make this as simple as possible – we’ve even got your writer’s block covered. The topic for the essay contest is: “What’s your favorite sound of summer? How do you experience summer differently now that you have a Ponto?”
Answer that question in any form you would like– with a photo, an essay or a video– and send it in to [email protected].
That’s it. You’re entered! All entries should address that question in some way, shape or form.
If I wrote an essay there a word limit?
Try and keep your entry at 1,000 words or less.
How do I know if you received my entry?
We will send you a quick response letting you know we got your entry.
I’m not a current Ponto wearer. Am I eligible to enter the essay contest?
Yes, anyone can participate.
What type of format should I send my entry in?
Please send your essay contest entry in a Word Document. Please don’t send a PDF or any other non-editable format. We want to be sure we can copy and paste your text. Also, please use a readable font (for example: Times New Roman, Arial, etc.).
Can I include pictures, links, and videos?
Yes! Feel free to get as creative as you’d like.
Can I submit something that has been published somewhere else?
We are looking for original essays, created specifically for this contest. Of course, afterward, you’re welcome to publish your entry anywhere you like. If you are a finalist, we ask that you allow the contest to reach its conclusion (when we announce the winner and hand over the cash) before you publish your essay on your own site or blog.
When is the deadline for entry?
All eligible entries must be received by Wednesday, May 29, 2013 at 11:30 PM EST. Any entries received after that will not be considered.
How will the finalists/winner be chosen?
After all of the entries are submitted, finalists will be chosen by the Oticon Medical Team based on a number of criteria — amazing story, clear writing, and adherence to all rules of submission.
Each of those finalists’ essays will be featured here, and we’ll be spreading the word far and wide. After all finalists’ pieces have been shared, we’ll open the public voting for one week. The grand-prize winner will be chosen by the highest number of votes.
How will the voting happen?
Once each finalist story has been featured, we’ll post the link to a voting ballot for all of the essays. Then, you can have your friends, family, coworkers and everyone head on over and vote for you! Each person can only vote once! So spread the word!
If I’m a finalist, how do I get people to vote for my essay?
Share a Facebook post, tweet about it, pin your entry. We’ll give the specific details on how to vote once all of the finalists’ posts have been featured.
When will the winner be announced and what will they win?
The winner of the Essay Contest will be announced on or around July 1, 2013. He or she will win a $500 visa gift card.
Do you have any additional questions?
Please send us an email. And, remember, the deadline for entry is May 29, 2013.
Help us spread the word! If you’d like to share the contest on Twitter, please use the hashtag #summersounds and mention @OticonMedical.
You can now see Microtia/Aural Atresia: A Parent’s Perspective on Audiology Online. Sign in (or create a free account) and click “Start Course” to view the recording of the course.
