November 2017 – Hearing Sonya Rose

An Unexpected Decision

Spending Thanksgiving in London wasn’t a decision I made lightly. After all, we typically host the dinner. It’s also my most favorite holiday and we live just blocks away from where the parade balloons are inflated – an incredible sight for any three year old. Denying Sonya the view of Chase from Paw Patrol being inflated to gigantic proportions made me feel a little bad, but given all London has to offer, I thought worth it. Yan had to be there for work a few days and then we could spend time with Sonya’s Aunt Emily who is currently studying abroad. Not to mention the many museums, shopping and landmarks. It seemed like a great plan.

Of course, as the saying goes, “man plans, God laughs.”

I remembered this saying as, days later, we took a black cab to Casualty First, a private urgent care center located at London’s St. John & St. Elizabeth Hospital. Sonya was crying and holding her right arm limply. She glared at me. “Mama you pulled me too hard!” she cried. And I cried too.

It’s funny because the day had started so well. We were planning to meet some friends at the Natural History museum in the morning, and I had let Sonya sleep in, so we decided to order room service for breakfast. Upon waking up, Sonya was thrilled to see a giant blueberry muffin await her. We were a bit jet lagged and I realized that the timing was tight to finish breakfast, get dressed, get a cab and make the 25 minute drive to the museum. And Sonya didn’t want to wear her CIs that morning.

As anyone who has traveled with a toddler (not to mention one who wears cochlear implants) knows, routine often must go out the window. Sometimes this is a good thing. I personally feel that too much structure for kids is not great. That having a day here and there where life is just not according to plan can actually be a great learning opportunity. But sometimes, it’s just too much. Sonya, who typically allows us to put her CIs on in the morning as she eats and watches Sarah and Duck, resisted more than normal this morning.

I tried to hold her down to put them on, but she struggled away. When she decided to slide her body off the bed to avoid wearing them, I took her arms and pulled her back up. The weight of her body was just too great on the ligament of her right elbow. I felt a click and she hollered in pain.

I quickly realized what had happened. Sonya held her arm loosely at her side and wouldn’t let me touch her.

Sonya had what is called “nursemaid’s elbow.” This is apparently a common childhood injury. It happens when a child’s elbow is pulled and partially dislocates. It’s obviously a painful injury but it’s also very easily treated.

At Casualty First (I can’t get over the name either…), Sonya and I waited in a bright, clean and empty waiting room for just 10 minutes before she was seen by a doctor. As she sat on my lap, the doctor examined her arm. No swelling or bruising – which was good. He simply took her hand turned it over and while distracting her bent her elbow toward her body.

Sonya screamed and cried. I held her tightly. “I didn’t feel it snap back in place,” the doctor told me. “I hate to do this, but I think she will need an X-ray, to ensure there was no fracture.” He sent us to wait in the hospital waiting room for what could have been hours. Sonya laid against me. I sang to her softly and then suddenly she sat up.

“Mama – it doesn’t hurt!” She smiled. “My arm is better!” Sonya moved her arm around in a circle and then sang with delight “the driver on the bus can move on back!” she exclaimed, smiling. The doctor soon confirmed that she was just fine. “These cases typically resolve themselves in 24 hours,” he assured me.

I can’t express the relief I felt. I also can’t express the guilt. I had really screwed up as a parent.

As we walked out of the hospital, I wished I had just known a way to communicate with Sonya when she wasn’t wearing her CIs. Surely, knowing some sign language would have been helpful in this situation! Had I just signed, “No you must put your CIs on or you will go to time out!” we would have probably avoided the entire horrific situation.

So, I have decided to do just that. If anything this situation was a learning experience. Sonya is getting bigger and the circumstances in which she refuses to wear her CIs are becoming more dangerous. Without communication I am forced to physically react and obviously that simply is not acceptable.

Sonya picked out a well-deserved toy from Hamley’s following that God-awful experience…

Following the disaster of a morning, I tried to make up for it. I took Sonya to Buckingham Palace, where we emulated the Queen’s guards as they stomp their feet. We had lunch in a restaurant (french fries and chocolate ice cream) and topped it off with a trip to Hamley’s. Sonya picked out two plush kittens which cost 35 pounds each. Yep.

Did I mention the Langham hotel in London has a great bar? 😉

UPDATE: we did teach Sonya a handful of signs including: all done, more, milk, water, mommy, daddy, I love you, no, time out, and eat. I find that when she removes her CIs, she also will turn her head away from me. Sign doesn’t really help in these instances either! That said, I do think that some sign is great to have as a back-up. However, I have found that Sonya prefers speaking to sign. She just gets tired of listening sometimes.

London Calls!

Sonya, Yan and I are spending the week in London! Sonya has been talking non-stop about the trip. Ever since Yan brought back the book London Calls from a prior trip, she has been obsessed with the Queen, the London Eye and the Gherkin. We arrived last night and Sonya screamed with delight every time she saw a double-decker bus on our way to the hotel (much to the driver’s delight, I imagine).

I can’t wait to share our trip when we get back next week! In the meantime, here is a video from Sonya’s last speech therapy session. She clearly is excited about our trip 😉

Have a wonderful Thanksgiving! xoxo

The Apple Watch is a Great Hearing Loss Tool!

Barb Cole received a cochlear implant just a couple years ago. She shared her experience with our readers, and promised to stay in touch. Recently, she reached out to tell me that she discovered a new and relatively inexpensive (well, when it comes to hearing loss technology) tool that has been really helpful: her Apple Watch!

Barb says her hearing loss consists of mostly high frequency sounds, which includes hearing birds chirping and the sound “s”. “I am able to hear some low frequency sounds. I have a Cochlear Hybrid Implant — processor type N6 — in my right year and a Resound Hearing Aid in my left.”

Barb currently owns the Apple Watch Series 3 (GPS + Cellular). It works in conjunction with her iPhone 6 and she uses iOS 11.

“The Apple Watch has become an important device that increases and improves my ability to function independently,” she says. “It helps me feel secure and safe in different environments.”

Here are some ways Barb has used her Apple Watch to help with her hearing loss:

Vonbruno Hearing Aid ($4.99) is an app that actually allows you to use the Apple Watch as a hearing aid! You simply plug in headphones and tap the “on” button. The app will amplify the sounds around you. It can amplify your voice in a microphone setting, and will increase the volume of something you might be listening to.

ReSound Smart App is another Apple Watch app that allows hearing aid users to fine-tune the sound captured by their devices. For example, when speaking with someone, they can use the app to block out all unimportant sounds.

The Apple Watch can be used to call for assistance. If you long-press the side button, you can start a call with emergency services. The Apple Watch knows what country you are in and will dial the right number. Once the call has been made, the watch will send a message to your emergency contacts with a map of your location.

The Apple Watch also serves medical ID bracelet. I find this particularly compelling given the fact that people with Cochlear implants cannot have an MRI (because of the magnets implanted in their heads). God forbid if something were to happen to Sonya I am thinking a medical ID bracelet informing emergency services of her implants is an extremely important accessory (and I imagine kids with CIs would much rather sport an Apple Watch than an old fashioned metal ID bracelet…)

Barb also mentioned the following apps, which can be downloaded to the iPhone (not Apple Watch):

Ava – 24/7 Accessible Life (Free) is built by a team of deaf and hearing people, Ava uses voice recognition technologies to show a real time, color-coded transcript of the discussion by leveraging the power of your friends’ smartphones, and learns to get better over time. Ava uses your microphone to hear and show you word for word what is said.

EarMachine (Free) makes it easy to listen to the sounds you want to hear. EarMachine has a simple interface that allows you to adjust the sounds coming into your phone’s microphone (or ear buds, although that’s not possible if you have CIs, obviously). Barb mentioned that she is considering buying big headphones (like these), which might work if you are wearing processors as well.

Barb says that the Apple Watch’s Message Center, Activity Center and Reminders (which helps with memory loss) have made her Apple Watch an invaluable assistive listening device and she holds it as important as her MiniMic 2+ and her Phone Clip.

Thank you so much Barb, for sharing this! Sonya may be too young for an Apple Watch this year, but I imagine parents of older kids with CIs and hearing aids will find this very useful!! (Also, I kinda just want one anyways so this is a great opportunity to justify buying one! 🙂

ADA, IDEA and Section 504: What Parents of Children with Hearing Loss Should Know

Parents of kids with special needs should know their rights under ADA. Check out key aspects of the law pertaining to hearing loss here!:

When I was a little girl, I would often come downstairs to see my mom, Barbara Mandel, tutoring a child with special needs. She obtained her masters in special education while I was in elementary school. By the time I entered high school, my mom had developed a thriving business testing students from high school to post-secondary for disabilities and, when necessary, providing those students with accommodations. The idea that we all gather and express information in our own unique ways, was preached to me from an early age

Today, I have a three-year-old daughter who was born deaf and who wears bilateral cochlear implants. Technically, she is considered a child with special needs, and I have gone back to my mom more than a few times to understand what rights Sonya has under US disabilities law, including: ADA – the Americans with Disabilities Act, IDEA – The Individuals with Disabilities Act and Section 504 of the Rehabilitation Act. While I haven’t had to use this information yet, I am sure I one day will and I thought other parents in similar shoes would benefit greatly from knowing their children’s legal rights as well.

Can you explain what IDEA is and who it protects?
IDEA stands for The Individuals with Disabilities Education Act. It is a federal law that governs early intervention, special education and related services for disabled schoolchildren K-12. IDEA requires that a public school create an Individualized Education Plan (IEP) for each child with special needs. IEPs are developed by a designated educational team with the goal of tailoring a child’s educational program to meet his or her individualized needs so that they can find success in the K-12 education system.

And what is Section 504 and who does it protect?
Section 504 is a civil rights law that protects individuals from discrimination based on their disability in connection with any public or private program or activity receiving federal financial assistance. A 504 Plan is developed when a K-12 student needs certain accommodations and modifications to the physical space of the school or the learning environment (as opposed to the educational program itself). Section 504 expands beyond K-12 and protects post-secondary students with disabilities as well. To note, Section 504 states that post-secondary students must have the opportunity to compete with their non-disabled peers (as opposed to IDEA which promotes finding success in a K-12 educational environment, A post-secondary 504 Plan ensures equal opportunity only).

What is the ADA and who does it protect?
ADA stands for the Americans with Disabilities Act. ADA protects the rights of all Americans who have mental and/or physical medical conditions, including hearing loss.

How does ADA apply to children who are deaf or hard of hearing?
For children (ages 3-21) with hearing loss, Titles II and III of ADA are most relevant. Title II requires public entities (including public schools) to ensure that communication access is as effective for children with hearing loss as it is for their typically hearing peers. Upon request, schools have to provide the student with hearing loss auxiliary aids or services. Title III expands ADA to apply to almost any place open to the public including private schools (with the exception of private clubs or religious institutions).

What do auxiliary aids and services for students with hearing loss entail under ADA?
This means that students who request it can receive qualified interpreters, note takers, an exchange of written materials such as notes, computer-aided transcription services (“CART”), assistive listening systems such as an FM system, accessible electronic and information technology and captioning.

Under ADA the person with hearing loss gets “primary consideration” when requesting an aid or service.
”Primary consideration” means it’s up to the person with hearing loss, not the school, to decide what services or aids are most appropriate. The school must honor the choice of the student unless they can prove that their choice is as effective and will give the student equal access.

And what does it mean that auxiliary aids and services need to be provided in a timely manner? What is considered “timely”?
Once the student has indicated a need for a service or aid, the public school district must provide it as soon as possible, even if the evaluation and IEP process is pending.

What about a student’s privacy?
Under ADA, privacy of the student with the disability must be protecetd. Services should not disclose the nature and extent of an individual’s disability. So while students in your child’s class will see that a child is using an FM system, it is illegal for the teacher to call out your child’s hearing loss.

My mom sent me a very cool chart at understood.org (I can’t recommend this site enough as resource for parents!) that gives a nice overview of the federal laws and how they apply to disabilities:

I hope this is helpful to the American parents out there reading!! Feel free to leave questions in the comments section. I’ll have my mom respond to you directly!

A Q&A with Renowned Speech Therapist Liz Ying

For those who have hearing loss, Elizabeth “Liz” Ying is pretty much a celebrity. She is widely recognized as being at the top of her field. For 40 years, she has been a pioneer in auditory-based oral speech and language therapy for adults and children with cochlear implants. According to the Center for Hearing and Communication, where she currently serves as Co-Director of the Shelly and Steven Einhorn Auditory and Communication Centers, Liz has transformed the lives of thousands of families, including ours.

It goes without saying that we jumped at the opportunity to work with her. Sonya started working with Liz at just five months, and we continue to see her today. Liz graciously agreed to participate in the below Q&A, which I hope parents and speech therapists who follow this blog will find helpful!

If you have a baby with hearing loss, what are the critical factors for long term success?
Given that I am an advocate for listening and spoken language, my feeling is you should (1) pursue the best audiological services to ensure your child has access to every drop of residual hearing possible and that they are getting the right amplification. (2) Commit to ongoing speech therapy intervention with a family-centered program. I can be the most experienced therapist in the world, but if the parents don’t convey the same strategies and practices at home, their child is not likely to progress. (3) Embed the child’s listening and language needs within everyday life. Working hand-in-hand with speech therapists and taking these strategies with you in your child’s daily life are the keys to success.

What should parents look for when hiring a speech therapist for their child?
You want to find someone who has theoretical training for techniques in listening and spoken language and who recognizes the developmental trajectory of language development.

Also, a good clinician will love kids! They will have a comprehensive approach and understand that a child is a child first. Speech therapy with children is play with a purpose. A good clinician will let the child play, but will also ensure that play is productive.

Lastly, a good speech therapist will be flexible. You can go into a session with a set lesson plan, but if the kid wants to do something totally different, you need to be flexible enough to switch it up but still accomplish your goals. Someone who is rigid is not going to be a great fit for working with children.

How is speech therapy for someone who got cochlear implants later in life different from a child who was implanted as a baby?
On one hand, it’s easier for adults. An adult has a language system already developed. It can also be more difficult. An adult will remember what sound used to be compared to what it is with a cochlear implant. Adults tell me the sound with the cochlear implant is tinny and that they can’t hear with it. Just like with a child, we must work to teach them how to listen with the new device.

And how do you do that?
Let’s say you have a person who works in an office setting. This person has managed their life through texts and email. They avoided conversational aspects in their profession. In this situation, you identify the immediate need – which is learning to listen for vocabulary in an office-setting. That’s where you start. Soon, the client will start seeing success within this aspect of their life.

At the Center for Hearing and Communication, we offer a “short term” therapy for such clients of 12 weeks, followed by an assessment. At the end of the 12 weeks, we discuss whether this has been beneficial and whether they want to continue therapy.

For people considering being a speech therapist for children with hearing loss, what advice would you give?
I would encourage them to understand that for children, especially babies, born with hearing loss – anything is possible. Unlike other limitations, hearing loss is an access issue. Once you provide the right technology and get the family on board to reinforce listening and language outside of the clinician’s office, kids can bridge the gap much earlier than ever before.

Sadly, a typical student in speech language pathology will get little exposure to kids with hearing loss. Most of the time, when I introduce this part of the profession to students I am met with great enthusiasm and surprise that they hadn’t encountered this area in their studies beforehand. And it is a very exciting field! You get every parameter you were trained to look at – i.e. the voice, articulation, language issues, and you can make a very significant difference in the outcome of many children.

Any other words of wisdom for parents and speech therapists who are reading this?
No matter how you look at it, a person with hearing loss may not receive a 1:1 signal. They may not get a message in it’s entirety. I feel that literacy is a critical component to successful auditory-based speech therapy. As soon as your child is born, start reading. Once the child has some language and understanding, use books even more. And refrain from paraphrasing and making up stories. Use the vocabulary in the books because usually it is not vocabulary you would normally use. My sessions are always organized around reading a story. I first have the child complete a task and the task leads us to a story.

“Literacy is a critical component to successful auditory-based speech therapy.” – Elizabeth Ying, Co-Director of the Shelly and Steven Einhorn Auditory and Communication Centers, Center for Hearing and Communication

Like today! You asked Sonya to repeat a sentence from a book, and she repeated it but also missed part of the sentence, right?
Yes! We need to teach Sonya – and other kids like her – to fill in those missing pieces. And the way to do that is to enhance her vocabulary through literacy. Once Sonya hears a word she knows, her brain will immediately pull up associated words. For example, if you say “dog” her brain will listen for associated words, like “leash” or “bone.” This is how the brain works to fill in missing information.

Reading expanded my world as a hearing person. I grew up in Jim Crow South. I didn’t have exposure to a lot of things. But I did through books! Once I learned to read, I could go anywhere. It’s the same for our kids with hearing loss.

Thank you, Liz for all you have done for Sonya and thank you for participating in this Q&A! I know other parents and clinicians will greatly appreciate your insight and experience!

Is There a Connection Between Hearing Loss and a Fear of Failure?

For three years now I have sat in on countless speech therapy sessions with Sonya. Implanted with cochlear devices at seven months, Sonya’s speech emerged, slowly at first, and then through bursts. Tracking her developmental leaps on this blog has been a fascinating endeavor and I hope other parents who have children like Sonya and who go the route of cochlear implants will get a glimpse of their child’s future through our experience.

While speech has emerged and while Sonya has a sweet, silly and bubbly personality at three years old, I have noticed that she remains very cautious when it comes to approaching new tasks. As we work with her speech therapists, Sonya will rarely participate in an activity until she feels she understands it. She seems afraid of trying something new and of being wrong.

According to Sonya’s speech team, this is not an uncommon trait among children with hearing loss. Given the sheer number of audiological tests, speech and listening evaluations and mappings (which require Sonya to respond when presented with noise), kids with hearing loss often approach new tasks with trepidation. They are working so hard to please that it’s no wonder Sonya and kids like her are afraid to be wrong.

Of course, as a child with hearing loss, Sonya must learn how to cope with the prospect of failure. She will need to fail in order to grow. One of the hardest things as a parent I have observed is stepping back and letting Sonya experience failure. It started as early as her first steps (which I wrote about here).

I also recognize that given Sonya has hearing loss we have thin margins to work with in terms of both protecting Sonya and pushing Sonya to experiment and learn from her mistakes. But how does one teach the importance of failure?

According to a May 2016 Stanford study, the way children perceive “being smart” was related to how their parents reacted toward failure. The more parents believed that failure is debilitating, the more likely children became concerned with their grades rather than of learning and improvement.

Seeing Sonya’s development, I can’t help but recall my own fears as a child. As a kid, I was shy. So shy I remember being at a family function and being introduced as “the cousin who doesn’t talk.” For me, this fear of speaking was absolutely related to a fear of failure. If I didn’t talk, I wouldn’t say anything that would be wrong or potentially embarrassing.

Much to my parents’ surprise, I decided to study abroad in high school. I lived with a French family in a quaint little town of 4,000 people called Espalion, France. I suddenly was immersed in a language I hadn’t mastered and I was quite literally the town moron. I remember people laughing because I kept saying “je suis excitée” when I was excited about something (not realizing the verb “exciter” means sexually aroused in French). Yep. It was a great lesson in failure. And I survived it.

A reunion with my French host family in 2016. I adore these wonderful people and am so glad they met Sonya!!

This experience brought me out of my shell in a way I never expected.

Now, I don’t think Sonya is shy at all. Perhaps it is the years of socializing through speech therapy, or perhaps it’s her temperament (she certainly takes after my mom and mother-in-law in terms of being social). But I do worry about how cautious she is. I hope we will be able to show her that she can learn from her inevitable struggles or setbacks. That failure can be viewed as growth — as long as she chooses to learns from it.

Oh by the way, here is Sonya in her halloween costume 🙂

Toys Featuring Cochlear Implants

Now that Sonya’s third birthday has come and gone, she is already asking for Hanukkah gifts! (Yes, I’m well aware that we have created a monster…) Nevertheless, I am keeping my eyes open for toys that features cochlear implants. I have been told that it is very important that Sonya have dolls or stuffed animals that “look like her.” Here is a list of a few that I thought were really adorable. Do you have any others I should consider?:

I love this Cochlear Implant Monkey. Not sure how it would hold up to Sonya’s abuse, but it is really sweet.

You can also find custom dolls on Etsy that can be made to look like your child.

Inspired by a real nine-year-old child, Mia is a wildlife photographer who wears cute red rain boots and jacket, a ladybug sweater and happens to have cochlear implants. How can you not love this?!

From the makers of Ella the Eczema Rash Doll (it exists!) comes Eland the Cochlear Implant Doll! Not sure how I feel about this one. Something about the freckles turn me off, but maybe others will love it?:

We received Kaci the Koala when Sonya was activated as a gift from the Cochlear company, and I still love it. It’s sweet and Sonya can take the CIs on and off – just like hers!

Build a Bear apparently has plush hearing aids you can purchase along with your purchase of one of their bears. Such a great idea! How cute would this Halloween Pumpkin Bear be with hearing aids?

If you admit your American Girl doll to the Doll hospital, you can add a hearing aid or two.

Finally, Makies – one of the first toy brands to get behind the #ToyLikeMe movement, sells different color cochlear implants that can be fitted to a number of toys. They are pretty small (3.6cm x 3.2 cm x 1.1 cm – but perfect for Barbie-sized dolls.

Do you have any other ideas? I am surprised there aren’t more options out there!

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