How to Connect Cochlear Implant Processors (N6) to an iPhone or iPad

Continue reading “How to Connect Cochlear Implant Processors (N6) to an iPhone or iPad”

Big Leaps

IMG_2390

Since my last update, Sonya has made a tremendous leap. Now 21 months, her speech is becoming clearer. She is saying more complex sentences. She is starting to use pronouns. There is still much work to do, but the difference in the past couple of weeks is remarkable.

One of my favorite developments is that Sonya loves to sing! She invents her own “songs,” and loves to sing them:

In addition to singing, Sonya is putting endings on words. For example, “duh” has become “duck,” “hah” is now “hat” and “fee” is “feet.”

Her favorite words are “outside” (which sounds more like “owfide”) and “yuck.” She combines words now and has started to incorporate pronouns into her sentences. While her speech has improved tremendously, her eating habits remain very limited. Any new food I offer usually is looked at with a scowl followed by a very stubborn “yuck!”

Sonya now describes big things as “big” and small things as “baby.” “Big pooper!” she says when she wants to be changed. She refers to herself as “baby” and points to her chest, which I have learned means she wants to do something by herself. When I try to get her shoes on, she resists, points to her chest and shouts “baby!” She hasn’t mastered getting shoes on yet, but her growing independence is both fun and frustrating to watch.

While speech has progressed, Sonya has struggled lately in terms of her sleep and clinginess. Naps are dwindling. I am lucky if she goes down at all these days. She wants me to “si dow!” (sit down) next to her while she falls asleep, and it is very difficult to leave the room (although I do force myself to). I recently noticed that when she wears her CIs outside, she will jump at the sight of strangers (perhaps anticipating a sound she isn’t sure about?) and sounds in the distance including sirens or helicopters. Upon hearing such sounds, she will cling to my legs, look up at me, raise her arms and say, “up mama!”

I have noticed when she does refuse the CIs, her independent nature returns. Rather than cling, Sonya will run ahead of me testing her limits by putting distance between us. I informed our speech therapists and audiologists of this development and we have Sonya scheduled for a mapping adjustment next week. In the following video, Sonya’s new pink sunglasses were a hit, but she wouldn’t wear the CIs. As you can hear, we are dealing with quite a bit of background noise in New York City, which I imagine is a factor.

Last week, while preparing Sonya’s breakfast, she came up to me, hugged my leg and looked up at me sweetly. “I wuv you mama!” she said, unsolicited. At that moment, I thought about all of the people who have helped her say that simple beautiful sentence. From the audiologist who diagnosed her as deaf and encouraged us to get CIs, to her passionate speech therapists at the Center for Hearing and Communication, her incredible surgeon Dr. Tom Roland, and our families who have supported all of us. I am so thankful to all of these people. She couldn’t have said it without them.

 

 

 

Suffering from Music Loss

This post follows an earlier post On Music in which I discuss how we are approaching music education for Sonya.

IMG_1378
Sonya points to her ears when she hears Yan practice piano. “Ee!” she says, meaning “I hear it!”

This afternoon as Sonya napped, I did something I hadn’t done in a long while, I listened to music for fun. As Radiohead’s Separator played, I concentrated on the first dense and complicated beat, which in its second half drops into a gorgeous guitar melody. It’s impossible to describe. I want you to listen to it. It suddenly hit me that Sonya may never love it as I do.* It might not be something I can share with her when she is older and it pains me to think that.

Music used to play an enormous role in my life. My dad plays the piano and guitar. To avoid having to clean up after dinner as a kid, I would sit in the rocking chair in our living room and listen to him play. I wanted to be like him so I took up the instrument too, and then, in high school, the guitar. In college, I continued to study classical piano, folk music, pop, alternative rock and (a bit embarrassed as I write this) underground/old school hip hop.

When I want to reminisce about the time I spent in France, I listen to Liszt’s Sonata in B Minor and De La Soul’s Three Feet High and Rising album. Scenes of my early days in New York City are forever coupled with the music of Bob Dylan, Rakim and Horowitz – playing Scriabin. For most of my life, I fell asleep and woke up to music.

This changed once I knew Sonya was deaf. When we incorporate music into our playtimes, we do so purposefully in order to help Sonya understand how to listen. For example, rather than just enjoy a song in the background, we play the song, dance to it, and then stop the music to help Sonya understand to listen for sound. Months ago, (to my naive delight) Sonya would dance to what I believe was music in her head. Now she knows that she must hear music aloud to dance. She will now point at the computer when she wants to hear it.

We also refrain from having music on in the background, as background noise can make it more difficult for people with hearing loss to perceive speech sounds.

I miss music but I also must remember that I don’t have a crystal ball. We don’t know whether Sonya will appreciate it when she is older. We don’t even know what she is hearing. She may hear the overall theme or rhythm, but she might miss the oftentimes subtle moments that make music so pleasurable.

For now, Sonya certainly appears to love it. Whenever Yan has a moment to practice piano, Sonya runs to living room pointing to her ears and shouting “EE!” her sign for “I hear it!”

*I do realize this might be the case regardless of Sonya’s hearing loss. Yan also hates Radiohead 🙂 

 

Silent Steps

The B sound continues to be difficult for Sonya. She confuses B and D, saying “dye dye” rather than “bye bye.” In fact, she uses the D sound to say most words. Pointing to my shirt she looks up at me and asks, “da?”

“That’s a button.”

“duttah Sonya says.

According to our speech therapist, such confusion is common among children with hearing loss as both D and B are high frequency sounds, and can be difficult to discriminate initially.

While Da reigns supreme, Sonya definitely knows how to use the B sound. She said banana one time at lunch. She said buh buh for bubbles on numerous occasions. She refers to Yan’s mom as Baba, and turns toward our computer screen to look for her, as we typically FaceTime once a week with her.

While it is clear that Sonya’s understanding of words continues to grow, I have noticed that she seems quieter lately. At therapy this week, she made few sounds. She would point at the toys she wished to play with, rather than vocalize her want. She would grunt or whine when she didn’t get her way. It is discouraging to see this after several weeks of clear growth.

While she makes fewer sounds, she moves with greater ease and loves to dance!

In fact, Sonya’s physical development may be the underlying factor. Sonya is now actively cruising. It started a couple weeks ago during an in-home therapy session. We were sitting on the floor of the nursery as usual, when our speech therapist asked if Sonya had started walking around our apartment by holding on to furniture yet. While Sonya had pulled herself to stand weeks ago, she hesitated to move further. While every baby moves at their own speed, Sonya may also have been reading into my own fears about her moving around our apartment. I flinch every time she loses her balance. I grab her just before she falls (although she still manages to sport some bruises on her forehead from crawling too quickly on slick wooden floors). Our speech therapist showed us ways to help Sonya learn to cruise in a safe environment, between the couch and coffee tables in her nursery. Now Sonya crawls up to that area and pulls herself up, then steps from couch to table. Her face beams with pride.

As her brain focuses on perfecting this new milestone, it is not that surprising that her speech development will be placed on the back burner momentarily.

In the meantime, I will try to enjoy this moment of quiet focus.

Sonya Says DADA!

I believe this week was a turning point for Sonya. On Monday, Sonya watched our speech therapist with such focus as the therapist made the “la la la” sound, that even our therapist was surprised. Sonya moved her tongue back and forth, trying to understand how to emulate that sound. The “la la” game is one we play all the time these days. Sonya loves her little baby doll and will pretend it is her baby as she rocks it and sings to it. Our goal is for her to associate her baby with the sound “la la.”

On Thursday, however, Sonya was in no mood for speech therapy. It had been a long trek that morning down the CHC. Traffic on the West Side Highway was terrible. Sonya hates her car seat and complained the entire time. The only way I can soothe her these days is to put on Elmo’s World. She shouts with delight and shakes her fists wildly as soon as she realizes it is on. She even emulates Elmo’s laugh. I realize that I am the biggest hypocrite as I always judged parents who would stick videos in front of their kids to keep them quiet. But when you are stuck in an Uber for 50 minutes, and your baby is screaming her head off, Elmo’s World is a God send. I used to have a 5.0 rating with Uber. Almost unheard of. Sonya is quickly changing that.

Once we arrived to therapy, Sonya was very quiet. Her attention span was much shorter than usual, and for some reason, each time our speech therapist said the word “yes” Sonya would burst into tears. We couldn’t figure out why. But that night, while Sonya was fighting us putting her to sleep, she erupted with her first word “DADA!” She even pointed at Yan while she said it (although sometimes she points at her stuffed lion…) But it was the most amazing sound. I will never forget it. I caught it on camera the next day.

And while I was just slightly jealous she said “DADA” not “MAMA,” I can only blame myself. I recently bought the book “Your Baby’s First Word Will Be DADA” given the many farm animal sounds in it.

Over the weekend, Sonya has consistently produced the “DA” sound, the “GUH” sound and the “NAH” sound. We can tell she is listening better too. She always smiles when you whisper her name and will listen and follow directions even when Yan is playing piano quite loudly in the background.

Such incredible progress this week and so proud of my girl.

On Music

When Yan and I used to discuss having and raising kids, we knew music education would be a given. Both former musicians (Yan plays piano and I used to play piano and acoustic guitar), music is what brought us together. On our second date, Yan made me lunch and then played me a Chopin Etude.

But we disagreed on how we would pass our love of music on to our children. I would suggest introducing them to all sorts of musical genres. Classical, jazz, pop, whatever. Let the child decide what they enjoyed and how they would incorporate it into their life. Yan on the other hand had a different view. “Chain them to the piano!” he would say in a joking (but not really joking) way.

We even bought a grand piano a few years ago. It takes up a significant amount of real estate in our New York City apartment, and forced us to forego having a TV.

IMG_0115
Sonya “listening” to Yan playing piano as an infant. She also might just be enjoying the vibrations that complemented her already vibrating bouncy chair.

When we learned that our baby had a high risk of hearing loss during pregnancy,  the irony was not lost on us. How could this happen to us of all people?

“Actually, it could be great.” Yan told me. “I will be able to practice at night and she won’t even notice!”

Yet, this also was not the case. Despite the fact that Sonya had hearing loss, she could feel the vibrations of the six foot-long instrument just fine. Yan’s interpretation of the Russian Romantics was enough to wake her (and many others in our building) from any sleep.

So the question of whether Sonya will appreciate music has haunted me. It is something I always ask older kids with implants. Trying to understand how they understand music through the prism of their deafness, I ask them simply whether they like to listen to music, and whether they play any instruments? So far, the response has been mixed. Some kids say they love music (typically pop or hip hop) but they would not want to listen to orchestral music. Others say they read the lyrics, but do not remember melodies. It is not something they participate in unless they have to. Disheartening to say the least.

While I have read that the newest devices (Sonya has the Nucleus 6 device by Cochlear) are much more sophisticated when it comes to hearing music than their predecessors, we will never really know what Sonya hears when she listens. We can try to emulate what it is like to hear electronically – as in a recent NPR story, which offers accounts of people who have cochlear implants and what music sounds like to them, but we will never know for sure. Interestingly, in the comments section of this story, even those with cochlear implants do not agree on what they actually hear. One commentator wrote, “Fascinating, but I’m not sure that I agree. I have cochlear implants in both ears. I could hear the differences in all of the clips, and the ones that are supposed to sound like CIs don’t sound like what I hear.”

For the time being, I will continue to encourage Sonya to experiment with music. She recently received a glockenspiel – which she seems to enjoy, though she also just loves to hit things with mallets, so I can’t be sure she is actually appreciating the sound she is producing. Ultimately, Yan and I may have to accept that our child will not touch the piano that sits in our living room, and that is okay.

Update: Sonya recently has taken interest in watching Yan play piano. I overheard them playing together recently and quickly caught it on camera. I think it is brilliant. She seems to play the right notes at the right times! Yan, however, says pure coincidence. Haha. In any case, we agreed it is adorable:

My Daughter the Cochlear Cyborg….?

Sonya was recently referred to as a “cute little cyborg.” Yan, who considers Star Trek: The Next Generation “a documentary,” absolutely welcomed the moniker. And why not…. I mean, the fact is, she is a cyborg. According to Oxford, because of her cochlear implants, Sonya’s abilities “are extended beyond normal human limitations by mechanical elements built into the body.”

CI T-Shirt
Available via Amazon here: http://www.amazon.com/CafePress-Cochlear-Implant-T-Shirt-Toddler/dp/B00MNNL4PM/ref=sr_1_5?ie=UTF8&qid=1439920025&sr=8-5&keywords=cochlear+implant+t-shirt

And I can see why people who wear cochlear implants may embrace the term cyborg to identify themselves. When Sonya was diagnosed with hearing loss, my brother sent me an article written by Michael Chorost, who proudly refers to himself as a “Cochlear Cyborg.” Born with profound hearing loss that grew worse over time, Michael chronicled his relentless pursuit to make himself hear a rendition of the famous musical piece “Bolero” by Ravel, through cochlear implant mappings and upgrades. The last sentence of his article was particularly moving to me: “My hearing is no longer limited by the physical circumstances of my body,” he writes. “While my friends’ ears will inevitably decline with age, mine will only get better.”

But the term cyborg still bothers me. I don’t want Sonya’s identity to be defined by the fact that she wears cochlear implants. It was one of my greatest fears when I learned she was deaf — that she wouldn’t feel part of our society. And it’s why Yan and I chose to pursue auditory/verbal therapy for Sonya, rather than sign language.

While it seemed like an obvious goal for us that we would want Sonya to learn to listen and speak and be part of our society, interestingly, a number of other parents we have met through speech therapy are heading in a different direction for their children. One mom I met, who now has a two-year-old with cochlear implants, refers to her child as “a deaf person who can hear.” After much work (and becoming immersed in ASL herself) her child is now fluent in English, American Sign Language as well as a couple other languages (clearly a very intelligent child!)

I certainly respect and see the wisdom behind such a decision. At night, when Sonya is not wearing her implants, I often wonder how we will communicate with her when she is older – when she has a nightmare or needs something. Sign language would certainly be useful in such a situation.

But I still believe we should focus on English first – as learning sign might interfere with Sonya’s ability to learn oral language (as children who are deaf may rely on sign if it is a tool at their disposal, as it is easier for them).

Ultimately, Sonya will be the one to determine how she chooses to identify herself – be it cyborg or whatever. And I suppose I just have to accept this. Sonya was born deaf. She may in fact in the future decide to learn ASL and join the deaf community. But for the time being, while I have some sway, I will do everything in my power to ensure that she has the opportunities available to her in our society first and foremost.

Strengthening the Weakest Link

New York City offers excellent care for children with hearing loss. Unlike many families, we were notified of the possibility of hearing loss well before Sonya was even born, and since that time have been able to proactively deal with it. We are surrounded by the finest surgeons, audiologists and speech therapists. Yet, this will not guarantee that Sonya will be successful in acquiring language. While a percentage of Sonya’s success will be based on the care she receives at the Center for Hearing and Communication and the Cochlear Implant Center, the most important factor determining how Sonya fares will be dependent on the work we do at home.

It’s a frustrating position to be in, as I am the least educated/skilled person in this arena, and yet, the greatest weight is placed on me — especially since Yan works and I am at home. And recently, despite the hours I have already put into helping Sonya develop speech at home, I have felt like I may be the weakest link when it comes to her ability to acquire language.

While Sonya has made leaps in terms of showing us that she hears all types of sounds, she is producing many of the same sounds she did prior to our trip to Italy. Still, I feel thankful and proud that she has come as far as she has. In the video below, Sonya responds to us whispering her name!

So for the time being, I am working to educate myself on ways to help Sonya acquire speech. The following list are things we are doing already on a regular basis. Also below is a list of books I am currently reading – which I thought might interest other parents in our situation. Look out for my upcoming post on how we are applying the suggestions in these books as well.

Ways to Promote Speech

1. Give opportunities for Sonya to ask for what she wants. If a favorite toy is out of reach, wait for her to vocalize that she wants that toy before reaching for it and handing it to her.

2. Imitate the sounds and facial expressions she makes.

3. Encourage her to use different vowels and speech sounds by linking sounds to toys and being consistent. For example, when we play with an airplane, we make the sound “aaaa” and when we play with a car, we make the sound “beep beep.” Eventually, Sonya will (hopefully) associate these toys with that sound.

4. Encourage Sonya to stop and listen to environmental sounds. When the phone rings, doorbell chimes or tea kettle whistles, we stop what we are doing and point to our ears. Encouraging Sonya to stop and listen to the sound – and then identify what the sound is we are hearing.

5. Narrate what is happening. Use simple language to describe the events as they are happening throughout the day. This is especially tough for me. Naturally I am an introvert – but I am forcing myself to become a chatty person.

6. Sing. We sing all day long. I try to add gestures to songs to keep it interesting/entertaining.

7. Read Baby Books. I have been told to choose books that have large pictures and are not too detailed. Brown Bear Brown Bear What Do You See – is a favorite right now. I ask lots of questions on each page, such as “what is this?” “where are his eyes?” “Where is his nose.” Sonya loves to read and typically wants to do so at least a few times a day. She doesn’t always make it through a book, however – and I don’t force it.

Books I am Reading:

511M20BB3XL._SX357_BO1,204,203,200_

We Can Hear and Speak: The Power of Auditory-Verbal Communication for Children Who Are Deaf or Hard of Hearing

content

Learning to Listen: A Book by Mothers for Mothers of Hearing-Impaired Children

1890627488

The New Language of Toys: Teaching Communication Skills to Children with Special Needs, a Guide for Parents and Teachers. This book presents toys and accompanying toy dialogues to use with children – teaching parents how to play purposefully with their child.

Three Weeks In and Five Observations

Five observations three weeks after Sonya’s cochlear implant activation.

Several weeks following Sonya’s initial activation and here are my thoughts:

1. Our experience has been very different from the many YouTube videos which portray the activation of a cochlear implant as some kind of miraculous event – in which one’s ability to hear can be turned on like a light switch. I have watched these videos over and over. They are so moving. I am not saying such videos are not authentic. But I do sometimes question the context. Was this truly the “first time” the person could hear? Or, was this the third or fourth mapping? In any case, our experience with Sonya was much less dramatic.

2. The real work is now. While Sonya may be hearing sounds, she doesn’t yet recognize them and is having trouble processing them. She must learn to listen for and identify every new sound – which requires intense therapy and practice at home. Interestingly, while Sonya used to be able to hear low register sounds with her powerful hearing aids, she now is reacting only to high register sounds (such as bells ringing or, the “sh” and “s” sounds). She will need to re-learn how to interpret and process low register sounds.

3. Sonya’s sleep schedule has changed. She is exhausted after her intense therapy sessions in the morning, and will often sleep 2-3 hours following. At night, however, after a day of stimulation, her brain may be having trouble shutting off – and she tosses and turns, unable to fall asleep. Apparently, this is very common for babies post-implantation. From what I understand, it typically takes about a month for babies to adjust to being able to hear.

IMG_0381
Sonya is exhausted after her daily speech therapy sessions.

4. I find myself questioning every movement she makes. Was it a normal developmental milestone or an issue that is developing post-surgery? For example, Sonya loves to sway her body back and forth. For several days we worried whether this adorable swaying might actually be a vestibular issue resulting from the surgery. Thankfully, we no longer believe it is the case – as it is clear that it is voluntary (she just loves to dance!)

5. Further to the above, there is a constant anxiety that I am not doing enough during the day to stimulate Sonya’s hearing. I try to emulate the games we play during therapy, but often Sonya’s responses are less noticeable. Am I speaking loudly enough? Am I using the right sounds? Am I doing this right?

Ending on a positive note – A recent coup was that we were able to adjust the size of the processors Sonya wears behind her ears. We attached the compact rechargeable battery rather than the full size battery. This allows Sonya to wear her implants without additional wires clipped to her shirt. Not only challenging for us to constantly adjust where the clips were placed, depending on whether she was sitting or lying down, Sonya can now move around much easier. Special thanks to my husband Yan and mother-in-law Lillian for pushing me to make that change!