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!