Experience of a Deaf Pediatrician Working with Families

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ROUGH EDITED COPY

EHDI

2017 EHDI ANNUAL MEETING

PLENARY III

EXPERIENCE OF A DEAF PEDIATRICIAN WORKING WITH FAMILIES

IN A DEAF MEDICAL HOME

AND

PRESENTATION OF POSTER AND WEBSITE AWARDS

FEBRUARY 28, 2017

8:00 – 9:20 A.M.

CART CAPTIONING PROVIDED BY:

ALTERNATIVE COMMUNICATION SERVICES, LLC

PO BOX 278

LOMBARD, IL 60148

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This is being provided in a rough-draft format. Communication Access Realtime Translation (CART) is provided in order to facilitate communication accessibility and may not be a totally verbatim record of the proceedings

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> Good morning. We're going do start in a few seconds. If everyone could come in and take their seats, that would be great. Thank you! Good morning again. My name is Sadie Silcott, I am with the health resources and services administration. I would like to welcome you again to the EHDI meeting. We hope that you have enjoyed the meeting thus far.
We have a few announcements and
housekeeping items before we get
started.
For those who are checking out
today, luggage storage will be
available.

Bring your luggage to room Regency 6 on this floor.
At the end of this plenary
session, we will announce the
Poster Awards and the EHDI
Website Award for 2017.
We ask the winners to stay for a

Few minutes so we can be sure to take your picture.
A blue ribbon will be place on
the awarded posters.
You are encouraged to check out
these and all of the fantastic
posters in the Exhibit Hall.

That's right next door. While lunch will not be provided
today, there is a food court
connected to the Hyatt Regency.
Also, the Market in the hotel
will have items available for
purchase.
The Hotel restaurants will also
have options for lunch.
So if you have time, feel free

To try the available selections.
This meeting would not be
possible without the support of
many people, including:
Our outstanding audiovisual
service company, Alliant Event
Services.
The phenomenal CART writers and
ASL interpreters through
Alternative Communication
Services.
The local volunteers who are
serving as room moderators

And the Utah State University's inn and conference
Center for organizing this
meeting with great care and
skill.
Finally, on behalf of the
meeting coorganizers, I'd like
to recognize and thank the 2017
Planning Committee and staff for
their dedication to making this
meeting a success.

Please hold your applause. Until I'm finished at the end of the names.
Will the following people please
stand:
Treeby Brown,
Joy Brisighella,
Jamie Cousins,
Kirsten Coverstone,
Kelly Dundon,
Michelle Esquivel,
Steven Florio,
Marcia Fort,
Gayla Guingnard,
Linda Hazard,
Tawny Holmes,
Thomas Horejes,
Vicki Hunting,
Casey Judd,
Ben Kaufman,
Michelle Koplitz,
Sean Maiwald,
Mandy McClellan,
Mary Ellen Nevins,
Robert Nutt,
Tammy O'Hollearn,
Terri Patterson,
Sandi Ring,
Sharon Ringwalt,
Tony Ronco,
Christina Turgel,
Allison Ward,
Karl White.

Thank you all for a job well done.
[Applause]
And now, I am going to introduce our third plenary speaker of the EHDI meeting, Dr.Robert Nutt. He will present on his experience as a deaf pediatrician working with families in a deaf medical home. University of Rochester division of neurodevelopmental and behavioral pediatrics,
Dr. Robert Nutt graduated from
Dartmouth College and received
his medical degree from the
Geisel School of Medicine at
Dartmouth.
He served on the Newborn Hearing
Screening Task Force for the New
Hampshire, helping to establish
the universal newborn hearing
screening program in that state.
Dr. Nutt completed his pediatric
residency training followed by
clinical fellowships in academic
general pediatrics and
developmental and behavioral
pediatrics at the University of
Rochester Medical Center.
Dr. Nutt has cared for families
in both a primary pediatrics
clinic and a
developmentalbehavioral
pediatrics specialty clinic.
He developed an ambulatory
pediatric clinic that provides
direct care to deaf and hard of
hearing patients and families as
part of a patientcentered
medical home at the University
of Rochester.
Dr. Nutt has been director of
the Deaf Health Pathway at the
University of Rochester School
of Medicine and Dentistry,
teaching medical students about
caring for deaf patients and
other special populations.
He serves on the Monroe County,

Task force of
Childhood Hearing and is a
member of the American Academy
of Pediatrics Leadership Team

For early detection and intervention.
His lifelong personal experience
with hearing loss and
proficiency in spoken English
and American Sign Language allow
him to appreciate the importance
of early childhood language
acquisition.

Please join me in giving Dr.Robert Nutt a very warm EHDI welcome.
[Applause]
> Dr. Robert Nutt: Thank you, Sadie, for that wonderful introduction.
A young boy sat in the middle of
the floor in his bedroom
surrounded by four pale white walls that towered over his small
figure. On the walls hung several paintings that he had done
during his free time at school
while his classmates and teachers sang along to the record player. He loved music
because everyone always looked
cheerful during music time, but
he preferred painting. A
splendid array of stuffed
animals stretched across the
head of his bed, adding color as
if to compensate for the pale

White walls.
Over the headboard, a dim light
illuminated his kaleidoscope of
these colorful friends as they
watched the boy play quietly on his bedroom floor. He always
seemed to understand what they
were saying even though they
never spoke back to him. Perhaps it was because the words were not
what mattered in his expansive,
colorful imagination. His
imagination made up for their silence.
With his hands he built a
miniature log cabin and imagined
that he was the strong yet
gentle father from the books his
mother read to him as he fell
asleep each night.
From two windows came the
sunset's soft, rosypurple glow
that came in and surrounded the
boy's small figure as if it were
a barrier between the imaginative world and the meticulously constructed one that went on around him.
between the animals and the sun
set, he surrounded himself with colors and patterns. It was the
way he saw the world, in
meticulous detail, anything else
was undeserving of his
attention.
Suddenly he was pulled out of
his imaginative world by his
mother's voice. "Robbie?" Still
on the floor, he turned around

Slowly to face her. "Why didn't you come when I"
His innocent expression stopped
her from finishing. She lowered

Her voice again and asked, "Robbie? Why
didn't you come when I called
you?"
"I didn't know you were calling
me, mom. Is dinner ready yet?"

He stood up, taking his mom's hand and followed her down the stairs, where dinner was waiting. I was only 4 years old. I don't know if my mother knew it, but that was the day that my deafness became a part of me. I started to put together my apparent stubbornness and constantly ignoring, the tantrums, the habits I had of pulling her chin in my direction when I was talking. She knew. Something was different. That was the day when even though nothing had changed about me, everything was about to change for her and the rest of my family.

A few weeks later at Children's Hospital of Philadelphia, I again got to interact with stuffed animals. They didn't talk back either. But they clapped and spun and made lights go off. That was fun. Because it made me feel good that if I pushed a button, I got to do that. I was right. And that was the day I got my fourth label. I was a boy, I was a brother, my parents named me Robbie. And the doctor said I had a bilateral sensorineural hearing loss. I have carried those labels all the way to this stage, and it is my pleasure to have the opportunity to talk with you all this morning and share my experience growing up with deafness and the insights I have gained from working with deaf and hard of hearing children and their deaf and hearing, hard of hearing, and deaf parents.

Despite having a new baby at home, my parents sprung to action. Parental tenacity. They talked to everyone, the audiologist, the otolaryngologist, the education specialist at the Pennsylvania School for the Deaf, the teachers and speech therapist at the private school where my brother was enrolled already. I know of many parents in this room who are all going through or have been through that. The fact that you're here demonstrates your tenacity, your willingness and everything that I have seen from working with parents it is that that drives the success of our deaf and hard of hearing children.

My parents also experienced emotions like many parents do now when they learn their baby did not pass the hearing screening. It wasn't available then, but we have that now at a very early age.

To parents who can relate to this, I want to acknowledge that you just want a good baby. You just want your baby to be all good. That's natural. That makes us human. When you're in the hospital room, postpartum, fluctuating hormones, trying to breast feed, nursing coming in nursing in every hour and ahalf to two hours and waking you up, and the emotions that come when somebody who you don't know says that your baby might not be all good. You have to deal with that, with everything else going on, as well as welcoming a beautiful, new baby into your home.

That sadness that you feel, that grief that you experience is valid. You should know that, and I think everybody respects that. It's what happens after that, after you grieve, after you learn, that's what we're all interested in, and that's why we're here.

So as a boy, I had my own emotions. I was scared, I was angry, I was frustrated. Again, my mother just thought I was never 31/2, 4yearold boy, but that was the day when she realized maybe it's not him. Maybe it's something else.

By the time I was 6 years old, I was wearing hearing aids. That's my family. I'm not advancing the slides very well. OK. That's my mom and my dad. I was born in West Virginia. My dad was in the Navy I was born in Portsmouth, Virginia, my dad was in the Navy. The story my mom loved to tell has nothing to do with my hearing loss, because it was much earlier than that, but the doctor brought her back, he brought me back to her, I had big, black eyes. That was the time when they used to put silver nitrate around babies' eyes. She thought something happened to me.

Later when she learned of my hearing status, it wasn't the first time she was scared something might be different.

So by the time I was 6 years old, I was wearing hearing aids all the time, except when I slept, showered and swam. We didn't have all of the flare, all the colors, or the fancy earmolds, all the stuff you have now. But my first audiologist got me to accept my hearing aids by making office visits fun. He made little animals out of the earmold guk left over. I still have a little duck.
[Laughter]
It's very hard now, so it preserved forever.
[Laughter]
He also told me that I could scare away the neighborhood bully by putting my hands over my ears, feedback. Scare him away.
[Laughter]
I tried that.
[Laughter]
He didn't run away.
[Laughter]
But he thought it was cool. So he stopped bullying me. Transition to the third grade was challenging as learning became more language based and instruction became more didactic. We were also noticing, well, my parents were, that my hearing level was changing. I got my Telex body aid. I had lots of good books about that. It was also the year that "Gremlins" came out. For those who are old enough to know "Gremlins," that's Gizmo. The furry thing you don't want to get wet.
[Laughter]
One of the rules for me and my class was to not get Gizmo wet, to not get my auditory trainer wet. Because my classmates noticed that the little pink thing sticking out of my ears looked a lot like this guy. We called him Gizmo.

So third grade I had Gizmo. In seventh grade we upgraded to Gizmo 2. That was Comtex technology.

I was an easy target for those in class who needed to bully. I don't know if there was any association, but that was around the time I started to have a recurring bad dream. Every few months, I had a dream that to me the at the time was absolutely terrifying. I would wake up like any other morning, take my hearing aids out of the dehumidifier dryers, put them in my ears and turn them on. Silence. I would open the battery door, take it out, make sure I had them in the right way, put them back in. Nothing. I was complete dependents on the functioning of advancing assistive technologies. I had no other way to communicate. This absolutely terrified me.

I eventually shared this with my mom, who, bless her heart, signed up with me to take sign language classes at Pennsylvania School for the Deaf. We went two nights a week for 10 weeks, four classes in a row, back to back. She would pick me up after sports practice. Have dinner in the car for me in a Tupperware container. Go for two hours of sign language class, from 6:00 to 8:00, drive home, and then in a private school I would begin all the homework that they give you, all the papers they give you, all the studying they give you around 9:00. In high school I figured out how to use study hall really well.

So my fourth class was taught by a sign language interpreter. There was disagreement whether or not hearing people should teach sign language classes, even interpreters, but this was a blessing for me, because that interpreter introduced me to the students in the high school downtown. Not only I was I learning sign language for me, and maybe practicing with my mom, who was OK, but I picked it up much faster than she did, necessity is the mother of invention or need.

We went bowling. We signed. I realized that my residual hearing was not the only thing that I had to depend on, and if I ever woke up and my hearing aids weren't working, even if I changed the batteries, that that would be OK. I would still be able to connect with people. I would still be able to connect to the world. And that was OK.

So when I was 4, I developed my diagnosis of my identity. When I was in junior high school I officially joined the deaf community. So I spent kindergarten through 12th grade at chestnut hill academy. I was the only deaf student in the school. I was a trivarsity athlete. Crosscountry, wrestling and crew. I took AP classes in college. I took AP classes my senior year. At CHA they have something called a senior project, the second half of the senior year, you do a senior project. Because I had an affinity with Pennsylvania School for the Deaf and the kids at Lincoln high school, I set up this project at PSD. So I called this going to France. Because after struggling with AP level courses in high school, after struggling with using an assistive listening device, after struggling with note takers and making sure that I understood everything and everything was on me, in the afternoon, around lunchtime, after PE classes were over, I could get in the car, and I realized I could leave my hearing aids in the car. I didn't have to wear the earmolds. I didn't have to listen through a straw, which is what it seemed sometimes. Or breathe through a straw.

When I got to Pennsylvania School for the Deaf, where the rule is that everybody on campus has to sing, hearing or deaf access, that was my France. It was literally like flying across the Atlantic, fitting into a different world, but somehow I knew the language. I was learning it quickly and assimilating quickly. I was getting to know this part of me that, after 14, 15 years, meeting only one other deaf person, before meeting the kids in Lincoln high school, that that was a country that I could get along with, and I didn't have to struggle so much.

My classmates in school, they were OK. When you're in a school for 14 years, they kind of accept you. New kids came in. The thing that I noticed was that I never had to explain how to communicate to me to the new kids on the block.

So one time I asked a friend of mine why don't I have to do that. How do they know? Are they just good people?
[Laughter]
We have an admission process for school, but I don't think they test you on how you interact with individuals who are deaf or hard of hearing. And they didn't attend the meeting every year that my mom and I did together eventually to educate the teachers. So what was going on?