Sibling Week

This week is my daughter Avery's birthday week.  She is a Halloween baby and is turning seven on Thursday.  Hearing loss affects our whole family-- we are all changed, mostly for the better, because we have Ella and Wyatt to give us perspective.  Avery is growing up as the firstborn Muse and as the only hearing sibling in the mix.  She may, in fact, have enlarged vestibular aqueducts, but she has never had an MRI to check it out and, luckily for her, she has never had any trouble with her hearing.  Such is the way with that condition-- you can actually live with it your whole life and then all of a sudden have a change in your hearing or you can always retain your typical hearing status. Hard to predict.  For now, though, Avery continues to describe herself as having "dog hearing", which is basically true.  She hears very soft sounds at very high frequencies, which makes her a little off the charts in terms of what she can hear.  My audiologist warned me never to whisper around her because she is likely to hear me anyway.

You would think this would make her journey easier than that of her two siblings.  Let's be honest, every kid with siblings has to share their parents and their home and their attention and love with their brothers and sisters.  However, Miss A has had to deal with an all consuming life of her parents' worry about Ella, and now Wyatt, since she was two-and-a-half years old.  That kind of life for a small child does not come without sacrifice and challenges.

When Ella was first diagnosed, I remember wanting Avery to immediately be able to appreciate her ability to hear and to sympathize with her sister's lack thereof.  I would secretly be irritated by the fact that she continued to throw tantrums and complain about not getting what she wanted all the time.  I mean, after all, why would she complain about anything at all-- she is the HEARING child. She should be immediately grateful and kind and giving all the time just because her sister was born deaf, right?  Silly me.  This Profound life is as much of a process for her as it is for us and she is just a kid.  The best thing to do is not expect too much from her and to respect that she still has all of the same sibling rivalry feelings that every kid has.  And she is entitled.

The fact is that Avery has come a long way into her own understanding of childhood hearing loss. I will never forget when she started out believing that all babies came with hearing aids (kind of like bottles and diapers) and would tell elaborate tales about what life was like for her when she had her own fictitious hearing aids as a baby. When she was four, she would feign hearing loss so that she could go to the audiologist and get some extra attention, and maybe be lucky enough to get her very own pair of hearing aids.  Now, I find her mimicking me in how I talk about Ella's implants or Wyatt's  progressive loss with neighbors, friends, and people on the street.  She reflects exactly what I say, word for word. Again, I have to watch what I say around her.


I believe that this experience is making her a more empathetic person.  Maybe not every minute of every day, but in the long-term scheme of her life. Did you know that an alarming percentage of children who grow up with a sibling with a significant disability go into helping professions related to their sibling's condition?  I imagine that she will be a talented ENT or Audiologist or Special Education Teacher or Speech Pathologist someday. Or maybe she will choose something completely different.  She is her own person and it will be fascinating to watch how she translates her sibling experience into her adult life.

 

In honor of all of the hearing siblings that are growing up with sisters or brothers who are deaf or hard of hearing, I am declaring this week on my blog my official "Sibling Week".  I am remembering to recognize sibling struggles and strengths by honoring Avery and purposely NOT the other kids this week.

Last week, she was the star student in her first grade class, referred to as the "Best Buddy of the Week" by her particular teacher.  The kids in her class focused on her the whole week.  She worked really hard on a poster where she got to tell the other kids all about herself.  We printed off special pictures of her doing her favorite things and hanging out with her family and friends.  On Friday, I was privileged to attend her fabulous parent-teacher conference where I was blown away by the positive review of her work and her behavior in class.  Her teacher had wonderful things to say about her.  The only ding was really the fact that her perfectionism gets in the way sometimes and can build up to a meltdown when she can no longer bear the frustration of being human.  She is definitely a first child.  And MY child.

Below is the letter that I was asked to write about her to culminate the week.  I sent it in a sealed envelope and she read it out loud for the entire class on Friday.  Happy Seventh Birthday, Miss A.  We love you more than words can say.

Dear Miss A:
Congratulations on being the Best Buddy of the week!  How exciting for you!  I have enjoyed learning more about you this week including that your new favorite color is light blue.  That makes Daddy happy because it is the same color as the Tar Heels! In our family, we love to watch North Carolina basketball!  Go Heels! I was a little surprised to hear that you have a new favorite color, though. All your life you have loved the colors pink and orange, but I guess you are growing up and your taste is changing.  I can’t believe you are going to be seven in a few days!


Watching you grow up has been so wonderful.  We love you so much and are so proud of all that you have become:  a songwriter, an artist, a piano player, a cheerleader, a dancer, a star student and especially a great friend.  When you were in preschool, you made friends with Rylee by lying next to her in a crib during a parade at school.  Ms. Tozier and I put you two down together and then we were talking to each other and we suddenly heard Rylee crying.  We had no idea what started the crying.  You were smiling a big grin.  Later, I looked at the video that I took of the parade and saw that you had reached over and tried to “love” on Rylee a little too much and grabbed her ear, which made her cry.  I know that you did not mean to hurt her but were trying to learn about her and make friends.  It was so nice to see you standing up for her and bonding with her all through preschool.  It takes a strong-hearted girl to always stick by her friends.  But you are not afraid to do hard things! I think you and Rylee will be friends forever.  I love that you have also made lots of new friends at East Side and in our new neighborhood, too!

 I love that you stand up for the people you love. My friend Judy talks about the first time she met you when we went to a conference in Florida.  Something had gone wrong with Ella's implant while you were in the kids room with her and they sent Judy in to help figure out the problem.  The problem was easy to fix-- her little magnet had just come off.  However, the real problem was that you were standing guard over her and not letting anyone get too close without approval from you.  In our family, our hearing and speech is a special gift—and you have the gift of both!  Your sister and brother will really be lucky to have you to teach other people about their hearing differences. You have learned so much about hearing loss! What a great big sister you are to them.  Thank you for taking care of Wyatt and Ella and watching over them.

You have always been a spirited little girl and sometimes it surprises us, but we know that it will take you far because you will always go after what you want.  When you were little, you never wanted to get dressed in the morning.  That is still true, right? One time when you were one, I had to really work hard to get you into your clothes.  I put you down to get my work computer and my purse.  Then, I turned back around after just a few seconds and you had your coat and hat and shoes off and you were working on taking off your socks.  I had to start all over again!  That is funny to me when I think about it.

Daddy always tells everyone how smart you are.  He loves  to tell people that you knew who all of the American Presidents were when you were just two and a half years old.  He had a big poster with all of the Presidents’ pictures on it and he would work with you on memorizing the names that went with each picture.  In just a couple of weeks, you were able to name all of the Presidents on the poster even though you could not read yet!  Very impressive!

Here are some other things that I love about watching you grow up:

I love to watch you cheer and dance!

I love to watch you learn to swim!

I love to hear you sing your songs that you write!

I love the hugs you give us!

I love to see how much you like to learn in school!

I love your smile and your strawberry blonde hair!

I love when you are silly with us!

I love to see you draw an amazing picture—like the ones in the dog book that you made in kindergarten!

I love all that you are and all that you are growing up to be!

You are my special first born girl!

Daddy and I love you very much.

Keep up all the good work and keep being sweet forever!

Love,

Mommy

xoxo     

                 

 

Language Nutrition

Today I got back from Washington, DC.  It was a great networking trip and I’m glad I did it.  The hardest part for me was leaving Wyatt.  Does that sound like favoritism?  Yikes.  Let me clarify. I miss all of my kids when I am travelling for my job, but Wyatt is still so young and it seems like the girls are settling into the idea that I sometimes have to go on trips.  Wyatt does not yet understand when his Mommy (read: food source) has to be too far away from him. So being away from him scared me. What will he eat?  He will inevitably use up the meager milk supply in the freezer before I get back so I was hoping he would 1) take a bottle consistently and 2) take a bottle of formula (gasp) a couple of times so that he got the calories he needs.  I mean, he is still only in the 25^th percentile for weight, so we need to make sure the child consumes what he needs.  And if he didn’t do both of those things (and sleep at least 6 hours per night) my mom (my regular childcare) would probably lose her mind while I was gone.

I lugged the dreaded breast pump with me so that the trip would only be a minor glitch in my plan to continue to breastfeed.  I really hate pumping.  I do not mind feeding the baby directly, but I do mind pumping.  However, I also know that if a mom plans to breastfeed for as long as I do and she still needs to work,   a breast pump needs to be part of her life, so I am willing to do it. But I despise it.  It takes too long and I get impatient. And I always feel like it is not doing its job completely. And I never get the milk that I want to get out of the whole process. And I feel like I should be mooing right along with the cows on the dairy farm each time I hook up to that contraption and listen to the horrible sound it makes. There…I vented.  That’s done.

The good news is—Wyatt did great! According to my mom’s meticulous records, he drank more breast milk than formula and still got in all of his required ounces while I was gone.  As for me, I am proud to say, this time the pump did its job and this is what I brought home with me:

Ok, so here is where the moms who did not breastfeed their babies are feeling like I’m getting preachy and braggy.  I don’t mean to brag about how much milk I produce.  Truthfully, I have always felt like a “just in time” producer of breast milk. I could never be one of those moms who has so much stored up in their garage freezer that they could stop feeding altogether when their babies are two months old and the kid would never eat a drop of anything but breast milk until they were weaned onto whole milk at one.  In other words, don’t expect me to put up a shingle and start selling my breast milk on Craig’s list because I just do not produce that much milk.  I also personally hate the Mommy Wars and I usually have a policy to only talk about breastfeeding with other moms who do it because it is not something everyone CAN nor WANTS to do.  I would never intentionally make anyone feel bad about how they feed their child.  

BUUUUUTTT…truth be told, I am actually really super duper proud because I far exceeded my low expectations for myself.  There were some acrobatics required to bring the milk home and I never thought it would make it all the way home in my little cooler.  Here is what did, and what I predicted might, go awry:

1)      The first refrigerator that they brought to my hotel room did not work properly. When I got back from my morning meeting yesterday the digital temperature on the outside was reading 66 degrees.  Not good.  I immediately transferred the milk from the fridge to the ice bucket and called down for a new one.

2)      I was not able to pump every three hours as is considered ideal.  But who really IS when you have a job that requires lots of long meetings? 

3)      My instinct was to pour it all out when I thought about having to lug it through security in my carry-on bag.  It made sense for a lot of reasons (temperature control, air pressure, etc.) to take it in the carry-on, but I did not want to hold up the line while I explained why I was not with my baby, but still desperately needed this harmless milk to an inevitably unsympathetic, recently-furloughed, TSA worker.  It just did not seem like it would go well.  So I searched online and found that I could safely pack it in a small cooler with an ice pack and put it in my checked bag instead. 

4)      I doubted my plan to pack it in the checked bag every second from the time I left my bag with TSA until I unzipped the suitcase next to the baggage carousel upon return to Atlanta and saw that all was well.  I pretty much expected spilled, exploded milk or milk that was way too warm or milk that was at least 75% soaked into my business casual attire by the time I got home. 

5)      Or, worse…I also imagined that it would be purposely confiscated! Hoping to appeal to sympathies, I had written a little note to the TSA person who would inevitably inspect my bag that read:

 “This is breast milk for my 4.5 month old baby, Wyatt, who is not travelling with me.  He will appreciate getting it as cold as possible when I get home.  Please close this cooler immediately after inspection.”

In spite of this, I thought they may decide to pitch it for safety reasons and write me a sternly worded note that would say something like:

 “Dear Wyatt’s Mom:  I should not have to tell you that there are consequences for carrying cube-shaped, electronic contraptions that look like small bombs in your suitcase on a post-911 flight to and from our Nation’s capital. The fact that you packed this alleged ‘breast pump’ along with several bottles (over three ounces apiece, mind you) of suspicious fluid in your luggage proves that you are simply un-American.  Therefore, as punishment, we added some of your alleged ‘breast milk’ to our coffee and then pitched the rest in the trash.  Please wean your baby if you plan to neglect him while you willy-nilly travel by air. Who do you think you are, anyway? That is all.—Signed, TSA Employee of the Month”. Ouch.

So, you can see why I was excited to have all 30 ounces of premium nutrition for Wyatt when I opened my suitcase.  When I got to my house this morning, I pretended to be an ancient apothecary, carefully poured all of the milk from the tiny bottles into to several freezer bags and put them in my garage freezer!! I felt instantly like a mom with a huge milk supply for the first time.  Then I realized that it was not going to last past my next overnight trip to DC…next Friday…when I will repeat the above list of acrobatics. Audible sigh.

So far, this post seems like it is just about being a mom, not about the specifics of being a Mom of the Ear.  That’s what all moms do, right?  They go through acrobatics for their kids.  And millions of us choose acrobatics for the CDC-recommended nutrition of breast milk for their babies. I’m really just like any other mom.

For just a minute, however, indulge me in a metaphor.  Recently, the Georgia Pathway to Language and Literacy Coalition is exploring a very healthy partnership with the Grade Level Reading Campaign here in Georgia.  The purpose of both the campaign and GA Pathway is to make sure that all children in GA, including children who are deaf and hard of hearing, can read on grade level by age eight. This metric is so important to the trajectory of children’s lives that in Arizona they actually use their third grade reading scores to predict how many prison beds they will need when those children grow up.  In other words, translating your ability to read the words on the page to reading to learn is so key to your socio-economic status that it can have the power to determine your whole live course. 

In response to this mission to get all children to read on grade level by third grade, both groups have been talking about changing the culture in GA such that parents and caretakers will all know the importance of “Language Nutrition” for their babies from birth to prepare them for life.  In other words, feeding their BRAINS is just as crucial to their survival as feeding their bodies.

So let’s apply this metaphor for a minute.  If the CDC recommended that a certain kind of language that only the mother can produce is the best language nutrition for every baby (much like breast milk), then things would be drastically different.  In addition to hospital staff handing you the baby within minutes of birth to latch on to nurse, the same hospital staff would tell you to talk to your baby as soon as you meet him or her for the first time.  They would model the behavior for the moms each time they came to take vitals by narrating the experience to the baby.  Moms would feed language to their babies from minute one like vital nutrition and they would seek a response from the baby when they talk to them. They would have language consultants, like lactation consultants, who would help mothers establish language feeding before leaving the hospital and would not let them leave without support if the moms were not catching on to the process.  We could have language hotlines for parents to call if they get stuck or have a question about communicating with their babies.  When mom left the house, she would be sure that replacement language nutrition was provided in her absence. When she returned to the baby, she would ask the caretaker about how much the baby ate and she would also ask how much the caretaker talked to her baby while she was gone.

Imagine it. If the culture changed THAT much, then when a potential language nutrition barrier was detected within the first few hours after birth --like a failed newborn hearing screening—it would be considered to be the same level of medical emergency as a regular feeding problem.  Babies would be given support from everyone at the hospital until a plan was made for how to address the barrier. After the baby left the hospital, immediate professional support would be provided to help those families leap over any obstacles in the way of language. And most importantly, the parents would be able to deliver the important brain sustenance in new and inventive ways, in light of the hearing loss, because the professionals were transferring capacity to the families and the parents fully understood the value of carrying through at home and the consequences of not. 

You see, Moms of the Ear, if we are so lucky, have the benefit of early intervention programs where we learn the tricks of the trade on how to get language to our kids’ little brains so that their brains develop as a typical child’s brain would.  In listening and spoken language early intervention programs in particular, the focus is on delivering the family’s native language (as opposed to a new language of ASL) to the child by transferring the power of talk to the parents.  We also learn to recognize when the baby is hearing our voices and we work to train our babies to listen extra hard through their hearing devices (called auditory training). Once audition is established, the parents talk, talk, talk more than we ever thought we needed to. We talk until our tongues are tired. We wait for responses and we talk some more. In theory, those same language acrobatic skills can be used for ANY baby to achieve great educational outcomes as long as the knowledge and skills are transferred to the family to carry it out in the home from birth.

My friend Comer Yates, Executive Director of the Atlanta Speech School, very eloquently talks about it like the fabled canary in the mine shaft.  If we deliver enough life-sustaining oxygen to the canary, then everyone in the mine survives.  If we all learn to how to talk to our babies so that we deliver enough language to the child who is deaf or hard of hearing, every baby will reap the benefits of that environment and every baby will be bathed in language. 

In turn, identifying and treating language barriers like deafness (or something else, like poverty) very early on will be as important to our culture as public health programs that promote better nutrition, break down barriers to healthy food and feed mothers and children through WIC or healthy school lunches.  We would have a world where every child who is deaf or hard of hearing has the same opportunity to live and work and thrive and grow as any hearing child.  All babies would live in a world full of easily-accessible language nutrition. Oh, and the regular food-type nutrition too. 

A girl can dream.

P.S. ---I’d like to give a shout out to the TSA agent who confiscated my psycho breast milk note today, probably spit on it, and then politely followed its instructions.  See, even TSA agents know how important food is to a baby. 

Sleeping Babies and Hear-oes

I promise to post something substantial later today or tomorrow.  Tonight I travelled to Washington, DC where I will be for two nights.  I'm missing all of my kids, but especially this one. 

I have never left him for this long! I hope he is doing this right now and that he stays like that until about 5am.  No midnight snacks tonight, Wy!

Hopefully, the sacrifice is worth it...I predict it will be.  Tomorrow, I am presenting at the Alexander Graham Bell Association's Board of Directors Executive Committee Meeting on the Family Engagement and Outreach Initiative for the Oberkotter Foundation.  AKA, what I do with my time between nine and five on workdays.

Then I will be trying to catch up with some of my hear-o friends at the American Cochlear Implant Alliance Symposium.  Looking forward to catching a screening of this new film called 95 Decibels tomorrow night at the Symposium.  It is a drama about parents who discover their child is deaf and then seek a cochlear implant.  Should be interesting!

By the way, the desk clerk at the hotel slipped in that it is a lot busier around Capitol Hill this week as opposed to last week...Glad folks are back to work around here!

Noodle

The day Ella used “noodle” in a sentence- August 17, 2013

Ok, so how many of you ate these in college regularly?  Noodles in a box.  There was clearly a box-like square container around these noodles at some point right?  Noodles do not come in a box at my house-- they are "out of the box".  Here is why...

 

Back when I was super nervous about language development for my child and we were counting all of the new words that she used, we got tested frequently for age appropriate vocabulary at the Atlanta Speech School.  I distinctly remember filling out the scantron sheet of words she knew only to have them scored by a machine and then interpreted by her early intervention teacher at the time.  We started doing the MacArthur test  with her as soon as she was expressively using language and I always took pride in her growth. 

I did find the test to be a little skewed, however, because the word lists may have been a little old and more suitable for a different climate.  There were a few that we never used as adults and so therefore she did not know as a child.  For instance, I never talked to her about salt because she was not old enough to cook with me yet—or so I thought—and we never sprinkled it on her food at home.  I began taking notice of all of the words Ella did NOT know from the test and started teaching to the test.  I bought pretzels with visible salt particles and asked her to lick the salt and described the pretzel as salty until she suddenly started saying “salt” every time she saw a pretzel.  Not sure that is exactly what the early interventionists were going for in terms of language acquisition, but it was a way to get better scores on the test.

Also, there were a ton of words on there that related to cold weather—snow suit, sled, snow. Hello! We live in GA!   Can we get a swimsuit or a waterslide on the list please?  She was just over 2 when I realized, she was a June baby and had encountered 2 winters in GA where there was very little snow.  I started singing the Frosty the Snowman song in October and reading The Snowy Day and suddenly I was able to fill in the little open circle next to the word “snowsuit” on the expressive language list on the test. 

Also there were words on the list that she was supposed to know that had synonyms that we used much more frequently in our home.  For instance, “noodle” was one of the words she was supposed to know.  We almost never said “noodle” in our house and instead used “pasta” or “spaghetti” much more frequently.  So I started trying to remember to expand her vocabulary to more words that we never used—I would say “Ella, would you like some pasta?  We have spaghetti noodles for dinner tonight.  Do you like pasta? Do you like noodles?” and I showed her the pasta as I put it on her plate.  A new experience... a new word—for both of us really.

Still, when we had pasta for dinner, she never said the word “noodle” and we never were able to mark it on the test.

Next were the body part words—we were easily able to mark off the parts of the face very early on, the arm, leg and tummy words, and soon enough she knew shoulder, elbow, knee and neck as well as thigh, shin and wrist.  She even used the correct words for her female parts.  These were easy to incorporate into bathtime.  However, we had two little girls in our family and these words were much more common than the male body parts.  We were never able to mark “penis” on the form, but it was on the list of words she was supposed to know.  But I was actually ok with her not knowing that word right now.  It seemed awkward to me to try to explain the difference between boys and girls to a two year old without an animate object as a prop and my husband was not planning to model for our children.

Fast forward to 2013 and we now have a little boy in the house.  My mom was giving Wyatt a bath and Ella walked into the room to find her scrubbing his little tummy. 

Ella asked very plainly, “Nanny? Why does Wyatt have that noodle between his legs?”

Fantastic.  She finally used the word Noodle!  IN A SENTENCE!

However, I guess we still need a little more teaching to the test, huh?

Sigh.  See how we hate noodles in boxes around here?

Love that girl.

 

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.