Here We Go. Again.- October 1, 2013

“Here we go again.” That is the common phrase that other parents who know our story say to me when they hear that my son, Wyatt, has a unilateral hearing loss.  Wyatt (4 months old), like his sister Ella (4 years old), was detected at birth as being a hard of hearing child through the universal newborn hearing screening he received at his birthing hospital just two days after his birth.  Most parents hear for the first time that their child will be having a hearing screening after they give birth because no one really talks about that during prenatal care.  Most parents also do not know that childhood hearing loss is the number one birth anomaly and is more common than all of the other things we are tested for during prenatal care or immediately after, such as cystic fibrosis, cleft palate, or Downs Syndrome.  In fact, it is more common than all of those conditions COMBINED.

We knew. 

We eagerly awaited Wyatt’s screening because we already lived 4 years of being parents to our sweet Ella, who was now a confident, happy, chatterbox of a little girl who happened to be born with profound bilateral sensorineural hearing loss. That is a very long, very medical term that says the hair cells in her inner ear do not function properly, causing almost complete deafness in both ears.  I will be writing more about Wyatt and Ella’s newborn screening process in a later post.  Let’s just say that our path so far has been “earily” parallel because Wyatt was born just two days after Ella’s fourth birthday on June 7, 2013.  But there are also some differences.  Wyatt’s hearing loss is also sensorineural, but it is only in one ear and it is so far only at the moderate hearing level, which, in the basest of terms, means he essentially has one and a half “good ears” and half of a deaf ear.

So here we are again.  It is early fall.  We are starting early intervention with our beloved early interventionist and listening and spoken language specialist, Ms. Linda at the Atlanta Speech School. Oh, Ms. Linda!! If only you could know this angel on earth who literally saved the souls of my family when we were in the depths of despair and grief.  She pulled on us and pushed us up hills with Ella as she has done with dozens of babies over the course of her esteemed career.  She transferred her capacity to teach our child to listen and talk so that we could give our child a full, rich first language. She let us cry on her shoulder and she delicately disciplined us when we needed it and most of all, she loved our child with her whole heart.  How she does this with all of the babies in her program each school year without her heart literally exploding is beyond me, but it works—it is a slightly different path for each child, some longer than others, but I truly believe it works.   Ella is fluent in spoken English now—so fluent that she has caught up with her hearing peers on all of her language assessments.  She attends a private preschool in our community.  She has hearing friends and deaf friends her age.  I have seen her enrich our lives and the lives of others every time she strikes up a conversation.  It is a miracle and a beautiful story that is not complete.

Yesterday, Wyatt had his first appointment, one of many almost weekly visits that we will schedule this school year.  It was like going home.  Interesting, because the first lesson was about “hearing at home” based on curricula developed by Jill Bader, Founding Director of the HEAR at Home Center. 

We entered the newly decorated apartment…we call it that because it is a huge room set up with “centers” divided into kitchen, bedroom, playroom, dining room and living room.  The idea is that babies learn home words first, so we need to have a home-like setting to teach them the words in the home and train the parents to mimic what they learn in their own home environments.  The new decor is fabulous and comfortable, yet modern in shades of green and white—the school colors for the Speech School.  The focus of our lesson was for Linda to see how Well Wyatt was hearing with and without his hearing aid.  She put him on his back on the brand new white shag carpet covered in a green blanket and tried to pull his attention toward her voice.  He had just woken up from a nap in the car and was fixated on me because we have always practiced an EASY schedule—Eat, Activity, Sleep, You.  Since his birth we have practiced this routine, as opposed to a strict schedule, in approximately three hour cycles. He had just completed his “Sleep” and was eagerly anticipating the “Eat”.  Since I am still nursing, he very much associates me with his milk, so the combination of his newly awakened neurological system and his training that his next few minutes were supposed to be filled with a hearty feeding, Linda was having trouble getting him to turn to her voice.  We tried putting me at the top of his head so that he would not be able to see me, but he strained his neck to look backward.  Luckily, I had to step out of the room to find my mom, who had taken a different car to the appointment and was in the front lobby waiting for me.  During my absence, Linda and Wyatt bonded for the first time.  He was turning his head actively now, looking for her voice.

 We played what seemed like a game—he was on his tummy for a typical tummy-time session.  Linda was evaluating and talking us through some of the reflexes and motor skills that we should be watching—ATNR, pushing up on his forearms, lifting his head.  The game was to have me sit on his right side— nearest to his hearing loss ear—and for her to sit on his left side.  She wanted him to hear my voice, the more interesting voice at the time, and lift and turn his head to the sound. He fussed—that neck muscle on his right side is a little shortened because he holds his “good” ear up so he can hear better when his hearing aid is not in—so he has trouble turning his head to that direction and prefers the other direction right now.  We are also watching to make sure he does not consistently hold his head at a tilt.  Linda reminded us to keep the hearing aid in his ear at all times and maybe have the audiologist turn it up a little more so that the added stimulation would help him use that ear more often and perhaps start straightening his neck out a little more.  Good suggestion, duly noted.

Ms. Linda started talking to my mom about the importance of talking to Wyatt.  Luckily, I mentioned, my mom—Wyatt’s caretaker while I am working-- is a natural at that—she always talks to babies and tries to get them to coo back at her.  She taught me about “turn taking” way before I knew what I was doing.  Linda encouraged us to slow down our rate of speech a little bit and wait for Wyatt to respond—he needs to get a word in edgewise around us ladies.  She complimented me on my natural speech around him and my ability to describe the things I was doing while I changed his wet diaper.

“Let him experience what you are saying—let him smell the diaper, feel the baby wipe, listen to the snap of his onesie.  He needs to understand that the words you are saying… like, “wipe, wipe, wipe”…have meaning.”

The snap of his onesie was something he could hear! I had somehow overlooked that because Ella had such severe to profound hearing loss that, even with her aids, we were not sure that a sound so soft would be something she could hear.

By the end of the head turning game, my mom was on the floor doing the game with me.  Linda reminded me that this was actually a 6-month old skill but that we should practice it now and we could do it in either a lying down position or in a feeding chair where he was sitting up.

“See who he is turning to—who is most interesting to him and put him on the hearing aid side.  You can include Daddy, and Avery and Ella so that he starts hearing the voices of the family members.  He already seems to know the difference between mom’s voice and a stranger’s voice because he stops to listen to me when I speak.  I am really happy with his communication skills right now.  I can tell you have been talking to him.”

I do not know any other way now.  It is in my blood for good.

As we leave, Linda asks me to bring an immunization form from the pediatrician to keep in the nurses office and to make sure I send her headshots of the family members so that we can make a book for him with everyone’s face.  She hands me a page for the HEAR at home curriculum that reminds us to point to our ears when we hear a sound and name that sound.  “Mommy hears the doggie.  Woof Woof.”  I remember the first time Ella pointed to her ear when she heard a sound—she was probably about 9 or 10 months old, sitting in the high chair and the telephone rang.  She pointed to her right hearing aid—her better ear and nodded her head up and down vigorously.  What a relief that was—she heard something and she knew it had meaning.  She knew not because it was easy for her to hear it but because we had taught her to listen for it from repeated points to our ear over that first 6-month period of early intervention.  “I hear the phone ringing. Do you hear the phone ringing?.”

Later that night I relayed our first experience with Linda to Keith (my husband).  He was happy to hear that Wyatt was starting to pay attention to voices already.  Then we moved on to conversation about the government shut down and I got very distracted…Keith is a federal worker himself and we worried that we would be facing a reduction in income in the coming weeks if they did not fix the issue. 

Even later, during the chaotic and tardy move toward bedtime for the three kids, I was in the throws of feeding and changing the baby a million times before he went down to sleep for the night (which was probably only about 5-6 hours long at this point) and I noticed my mom at the kitchen table with Ella.  My mom was on the phone.

“Has she had a bath yet?”

“No, she is coloring right now.”

I rolled my eyes.  She had a nap earlier that day and that meant she was probably going to go to bed later than usual tonight.

This morning, I woke up to this:

 

(Photo Credit: Scholastic Reader, 2013)

Simple, but so important to us.  She brought home this activity from school yesterday and it was not completed.  My mom said that she looked at the page and said, “Nanny, I need three markers—one yellow, one red, one green.”  My mom had not read her the instructions. But she helped her find the right colors in the playroom and they returned to the kitchen where Ella got to work. While my mom was on the phone and I was busy with Wyatt, she color coded all of the apples correctly and in the process was starting to associate the letters with the colors she was using: “r” was for the red marker, and so on.  I was elated and relieved and excited all at once.  Self motivated. Relying on previous experiences to interpret the instructions. Asserting her needs with my mom, and then completing the assignment neatly and without help.  Huge victory for her. 

Hooray Ella!  We are marching toward reading and she is showing us how she is developing support skills for herself.  How could I ask for more? Here we go.

Thirty Million Words- October 4, 2013

I am feeling a little blue today.  I may just need a nap and a glass of wine, maybe not in that order, but I think it might be because I spent a lot of energy on a GA Pathway meeting yesterday which was both exciting and difficult for me.  As a parent who has made a choice about  my children's mode of communication, occasionally I encounter resistance from a Deaf adult.  Usually it is about my choice for Ella to get a cochlear implant.  Sometimes, like yesterday, there are words that sadden me because they imply that I do not have my daughter's or my son's best interests at heart simply because I am a hearing person and my child is not.  This is a complicated issue to which I am very sensitive for both the Deaf community and for my own family and I'm not sure how to solve the issue. When I feel like this it makes it hard for me to attend to the details of life.  Instead, I write it out so that I can move on.  Today, the moving on part is extra hard.  So I am sharing a previous journal from earlier in the month in hopes that it will serve to cleanse my heart and mind of its heaviness.

 

On this day, the researcher and cochlear implant surgeon Dana Suskind is hosting a conference in Washington DC today with other groups who are interested in the Thirty Million words concept. On this same day, moms are having an impromptu conference in a closed group on Facebook regarding the hardest decision of their lives—whether or not to get a cochlear implant for their severe to profoundly deaf child.

 

First, let me make a couple of points that most people do not know.  The choice to get a cochlear implant for Ella…her first implant…was the hardest decision I have ever had to make.  Not just because of the head surgeries it would require or the threat of a mechanical failure of the device, or the fear that it might not work, as many people in the deaf and Deaf communities told us.  I cannot tell you how many times I heard the sentence “It does not work for everyone.” from deaf people that year.  So we wondered, were we doing something to our child that would cause her pain, or physical harm, that would turn out to be completely useless to her in the long run? That seemed like a really terrible idea.

To add insult to injury, I was attacked several times for the decision by members of the Deaf community. The first time I mentioned to a Deaf adult that we had decided to get a cochlear implant for Ella, was at a conference in Philadelphia.  It was at the annual meeting of my professional organization, the American Public Health Association.  Two of the younger consultants on my team were making presentations at the conference and I was attending the poster presentation for one of them when a poster across the aisle attracted my attention.  It was a poster on health disparities in the deaf community.  I read the research with a lot of interest because it said what I feared—that being deaf made it harder to get and understand critical health information, probably because the medical system was not set up to make it easy for deaf people to get their needs met.  Regardless, lots of health indicators from heart disease to diabetes, are more prevalent in the Deaf community and according to this poster that was because of a breakdown in communication between provider and patient.

I started asking the author some questions about the poster through an ASL interpreter.  After several exchanges, the researcher asked me why I was so interested in the topic.  The interpreter translated her question.  I told her that I was generally interested in health disparities in underserved populations, and that in this case it was personal because my four-month-old daughter was recently diagnosed with bilateral profound hearing loss. She is deaf.  The next question seemed innocent enough to me, but it was a trap. The interpreter said, “What are your plans for her?  Are you learning sign language?” I answered, “Well, we are doing some signing with her because I had taken an introductory signing class, but we were enrolled in a listening and spoken language early intervention program and we were headed in the direction of a cochlear implant for her. 

And then the dagger.

After the researcher stared me down and signed something, the interpreter said, “Don’t you love your child just the way she is?  Why do you want to change her?”.

It was at that moment that my plans instantly shattered.  I had seen the positive effects of a cochlear implant on other kids and I thought we were headed in the right direction, but my doubt that it would work for her came immediately to the surface.  I needed convincing again—I was again unsure that it was right.  And worse:  I was now certain that at sometime in the future, the decision we made would be seen by deaf people, and possibly by her, as something that we were doing to try to “fix” her because she was not whole in our eyes. I asked myself if I did not lover her because I thought she was not whole or because she was not perfect as she was.  Every fiber of my body replied it was not true—not even remotely close to the feeling I had.  I loved her with my entire heart, so how could I love her immensely and wholly without thinking of her as whole.  Then I asked myself—Will you ever be able to convince others and her of that fact if we chose to alter her hearing status?

I still do not know.

But the way I see it, according to the latest research on prenatal neural plasticity in the brain, babies start hearing in the womb at 5 months gestation and can remember words they hear in the womb once they are born. Their brains are literally wired for language—sound based language. Because my daughter heard fewer words in the womb than a hearing baby, she was born with a 4 month language delay. According to Dana Suskind’s research and others who have studied language development, if you take a child who would otherwise be language delayed due to poverty or hearing loss, and you increase the conversation in the home using three T’s: Talk more, Take turns in conversation, and Turn off the TV, you can help that child overcome his/her language barrier.  The key to having smarter kids is to talk to them more and let them experience language with family members as much as possible. 

In addition to the auditory training that you do with a baby who is deaf and wears hearing aids, you also are told early on that the best thing that you can do for him/her is talk, talk, talk.  And wait for them to talk or make sounds back and then reinforce that early conversation with positive feedback and more talking.  We learn to narrate our entire lives in order to cram those 30 million words into the child’s little brain.

You know what else I learned?  One of my dear friends who had her child with hearing loss first and then had a second child, a hearing baby, she learned how to parent this way.  Auditory verbal therapy was the only way she knew how to relate to a baby. So she talked and talked and talked to both of her children. All. The. Time.  And you know what happened?  That little baby of hers was already talking at 8 months old.  I remember him starting to pull himself up on a chair and pointing to things and saying, “Duck!”, “Ball!”, “Uh, Uh Up”.  Was he smarter?  Probably, but maybe that was, no more than likely that was BECAUSE of the talking.

So how does a hearing parent of a child who is deaf give their children that kind of language? How do we bathe them in enough words to help them jump the hurdle they are born with? The baby is already a little behind at birth, but has tons of potential.  The brain is a sponge, but not forever.  By three years old it starts and by five it is well on its way to being less plastic and malleable. Early intervention is supposed to be happening by 6 months of age because kids enrolled that early do better later. 

So, by my logic, unless we could force feed her a complete and rich language all the time for five straight years, starting at age 6 months, we would need to be fluent in that language before she was six months old.  I asked myself a question: Could you be fluent in American Sign Language by the time she is six months old?  Well, guess what—she was not fully diagnosed until she was 3.5 months old.  So by the time I was asking myself this question, I had 2.5 months to get fluent in sign language.  No way.  Not unless I quit my job and absorbed myself in the deaf culture.  And even then, her sister and her father would likely not be fluent in time.  No way her grandparents would be, not to mention everyone else that should could get words from in our world:  neighbors, friends, people on the street, the guy at the yogurt place.  I was not planning on letting a Deaf mentor move into my home so that he or she could give my child that language.  Teaching her to learn a language definitely felt like my immense and terrifying responsibility.  If we chose sign language, it would be essentially at least 95% up to me to give her those 30 million words.  The math was overwhelming.  I had roughly 2.4 million minutes (if we did not sleep at all in the next 4.5 years) to single-handedly give my child 28,500,000 signs! On top of my already overwhelming mom-life, I did not have faith in myself to take on that type of responsibility.

Maybe that is lazy.  Maybe it does not recognize who she is.  Maybe it hurts people in the Deaf community.  But it was my reality.  I did not think I could do it.  And I recognized it early enough to make a different choice.  I concluded that she needed to have the opportunity to get access to EVERYONE’S words in order to give her the verbal strength to leap over her language gap.

As I peruse the 60+ comments on my Parents of Children with Hearing Loss Facebook group, I do remember how painfully hard the decision was.  I remember how much I cried and worried.  I remember wanting to run to Mexico the night before her surgery so that we could just avoid it altogether and keep her just as she was.  How I wished for a crystal ball that could tell me if it was going to work for her and if she would hate me for it later.  Somehow, we pushed through all of that and made the hardest choice of our lives. And here is what it kind of looked like for us to actually go through the surgery: 
http://www.youtube.com/watch?v=w_n01GlUAss
 

The Deaf Community will have a hay day with that video because of the reference to “fixing” something in the lyrics.  There is a difference between wanting to “fix” your child and wanting to “fix” her ability to learn language from her own family.  Most people think that the CI decision is about hearing or not hearing.  It is not like that for me. It is about LANGUAGE.

The Moms of the Ear have a lot of choices to make.  Hard ones.  And they do it every day— CI or hearing aids or ASL or all three?   FM system or no FM system?  Oticon or Phonak or Seimans? Hold for us a little loving space to make our decisions.  Try not to prey on our fear or heartbreak or love.

Instead, just pray. So much more helpful.

The Day I Pondered the Merits of My Yardstick….October 17, 2013

Today, after a long day of talking about data on outcomes measurement and how best to track kids with hearing loss at the Georgia Pathway to Language Literacy meeting, I just asked my mom if she knew how they came up with the “yard” as a unit of measurement. She had no idea.

It is useless knowledge really, but I wondered. Then I Googled the origin of the yard and found that according to the all-knowing internet, “A yard was originally the length of a man’s belt or girdle, as it was called. In the 12th century, King Henry I of England fixed the yard as the distance from his nose to the thumb of his outstretched arm. Today it is 36 inches.” Fascinating.

I was pondering this because my early intervention specialist gave me a lesson for my four-month-old son, Wyatt, which explained the importance of proximity of my mouth to Wyatt’s ear/hearing aid microphone. She reminded me that you should always be at about an arms length, or a yardstick, from his mic if you want him to hear you well. For a child with hearing loss, that is a critical length to remember because the microphone functions best at this distance from sound. When they are babies that is easy because much of the day they are actually much closer to us than a yardstick’s distance as we cuddle them, feed them, burp them, rock them, etc. As I am now a great narrator of my day to my baby, that means my voice is always close by when I’ve got him close to me and he can get more of the language his brain needs. I also think of it in terms of my daughter Ella’s cochlear implant microphone—if she says “Huh” get closer to her and repeat, maybe have her look at me. We could also use her FM system to bring the sound of my voice to a fabulous distance of 6 inches from her ear.

So after gaining a full understanding of the yardstick and how to guestimate it regularly, I started wondering what else I spend my days measuring with different “yardsticks” : How good of a parent was I today? How caring and open was I to others? Did I accomplish all I hoped to at my job today? Are my children well-dressed? How appropriate are their clothes and accessories when considering the weather and all of the Joneses at our fairly affluent suburban school? How long did I work out today? How many steps does my pedometer have on it today? Ok, in truth, I do not really work out and I do not own a pedometer. But it was a nice thought. How genuine am I being in this blog post? How well-written is it? You get the idea. Always measuring.

 

My husband and I will often measure our success with each other based on how much we are multitasking in pursuit of a well-oiled machine of a home. “I sent three emails while nursing a baby and making a phone call to the security company. What did you do today?”

I truly believe, due to my feminist upbringing, that (sorry, guys) women always win at the multitasking game. Which is why, I think that the following meme was going around Facebook recently and I have seen it in my newsfeed at least twice this week.



It is just not fair to measure our spouses by how many tabs they can maintain at once, right?

In my stressed- out-working-mom-of-three life please now add a tab for hearing loss and another one for yardsticks. I am even more evolved now because I have 2,859 tabs open. Seriously, though, I can now physically measure how well Wyatt and Ella are hearing me through their hearing technology. Am I more than an arms length away? If so, that is too far. Get closer and keep talking. That is what I am thinking each time I look at my baby sitting in a chair or lying on a blanket or being held by someone else. Get closer and keep talking in pursuit of 30 million words.

Interestingly, we also got some news about Wyatt’s hearing loss last week that is making me think even more about measurement. His MRI shows that he has enlarged vestibular aqueduct syndrome, which means that the bony canals that connect the inner ear to the depths of the skull are larger than a millimeter. A millimeter is roughly the size of the head of a pin! So tiny. When I read this online, I was shocked that something that itty bitty could by itself be such a raging menace to one of our senses.

And then I realized that such is life—it is the small things, not always the big things that matter most and the impact of a small thing can often be huge.

In our case, something went wrong in the 5th week of my pregnancy, either by genetic code or by environment, (read: because of something I am or something I did), so that the tiny millimeter sized tube in his skull got too big during its formation. Soon it would create a pressure imbalance leading to malfunction of the hearing hair cells, called cilia, in his inner ear. Those are even tinier than a millimeter—they are microscopic and there are thousands of them in his cochlea. At this very moment, in fact, there are quite possibly some minuscule hair cells dying in his inner ear. Poor little dudes.

Strangely, this is both good and bad news for us. On the good side, we now know the culprit for both of our kids. Somehow the understanding that Ella has EVAS never got to my brain as usable information until Friday. I’m not saying the doctor didn’t use the words and I’m not saying I didn’t hear them or process them, but somehow I did not absorb this information after Ella’s MRI enough to make it usable. No matter who is to blame for me not getting it, I never did until Friday.

Here’s a measurement: It took exactly four years, four months and four days for me to “hear” the cause of this profound life that I’m living. It was liberating to finally have some more understanding. It was also a little depressing to know that Wyatt’s good ear, his left, could very well have progressive hearing loss at some unknown point in his life just like the right ear. He should avoid contact sports, head trauma from falls, and at some later date, maybe even air travel (?) because the sudden pressure changes in his head can impact his hearing. However, I was oddly relieved to know that if he goes completely deaf in his right ear, and the left also begins to decline, his chances for quality, long-term amplification actually go up. You see, many people do not know that you are not a cochlear implant candidate until you have hearing loss bilaterally (or in both ears). So, if he remained unilateral, or deaf in only his right ear, and the left ear had typically sized vestibular aqueducts, he would live his life kind of one-sided and would always struggle locating sound, could possibly have a language delay, would always struggle in noisy environments, etc. In fact, if his left ear stays typical and his right ear continues on the slippery slope that it is going in, we would eventually discontinue even hearing aid use. In other words, if the two ears are too different from each other, hearing aids no longer improve hearing, they just distort it.

Soooooo…. as for yardsticks, when it comes to early language learning, one ear is not necessarily better than none.

Tomorrow we go to the audiologist to trade in his hearing aid for a stronger one because of the progression to the severe range that we also discovered last week—the softest sound Wyatt can hear in his right ear is measuring between 60 and 70 decibels across all of the frequencies of sound, which makes his hearing moderately severe instead of moderate to severe. Here he is right before his MRI. Let’s see how he looks tomorrow with his bigger hearing aid.
Bigger. Sigh.

 I’m not worried….I will still want to eat his cute little cheeks. Isn’t that how we measure baby cuteness? By how edible they are?