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.