Families receive valuable insights from second opinions

Families receive valuable insights from second opinions

Minnesota Hands & Voices
Minnesota
July-August 2013
focus
—supporting families with kids who have hearing loss—
Make friends at our annual
Thursday, Aug. 1, 2013
5 - 8:30 p.m.
Como Park Midway Pavilion
(Midway Parkway & Horton Ave.)
• Dinner: Famous Dave’s BBQ • U of M Raptor Center’s birds of prey • Face Painting & Games • Door Prizes!
Please RSVP by Monday, July 29:
Picnic RSVP
Families receive valuable insights from second opinions
When you need to make a big decision,
you look for advice from many sources.
The same should be true when you need to
decide if a specific therapy or surgery is the
right one for your child who has hearing loss.
“Sometimes you simply need to hear the
same information from another professional
for it to sink in and feel comfortable with
the decision,” said Candace Lindow-Davies,
MN Hands & Voices Coordinator. “And,
sometimes, there may be new information
shared.” Candace acknowledged that it can make
parents uncomfortable telling an audiologist
or other medical professional that they want
to get a second opinion­. “They don’t want
to offend that person, especially if they have
an established relationship,” she said. But,
most medical professionals want parents to
get all the information they need to make
informed decisions.
“I welcome families to seek second
opinions,” said Melissa Ferrello, an audiologist from University of Minnesota Amplatz
Children’s Hospital. “Sometimes a family
will feel guilty asking me about going to
another center, but they shouldn’t. Many of
the surgical options (such as bone-anchored devices or cochlear implants) are an elective
surgery that is a team decision, and most
importantly, a family choice. The family
has every right to seek opinions of other
professionals.”
Parent Guide Brenda Hommerding has
twin girls with hearing loss, and has had
twice as many opportunities to seek second
opinions, which she says “help in most
situations.”
“If both recommendations are the same,
then you are moving in the right direction,”
Brenda explained. “If the recommendations
are different, then maybe you should think
things through or even look at another
opinion.” She looks at getting a second
opinion much like taking a test a second
time — your understanding of the material
improves with the second go-round. She
encourages parents to trust their gut — if
something doesn’t feel right, get another
opinion.
One mom in our community found
that a second opinion wasn’t enough. She
trusted her gut, and sought out a third
opinion, which turned out to save her son’s
life. When her son’s physician delayed evaluation for a cochlear implant over concerns
about long-standing infections, she and her
husband went to another doctor because
they felt their son was “losing precious
language time.” The second doctor was eager
to schedule implant surgery, despite the
history of infections.
“This ENT was impatient and did not
take time to answer our questions and was
ready for the next patient within seconds
of telling us he wanted to schedule surgery,”
the mom said. So the family looked for a
third physician.
“This ENT took time to talk with us
about the other ENTs’ reports and asked us
if he could do a CT scan,” she said. The scan
showed an anomaly in her son’s ear that
stopped the normal flow of fluid through
the eustachian tube. His mastoid was
backed up with infection that was eating
through his bone and dura, the membrane
covering the brain.
“He could have died if the infection had
reached his brain,” she explained. “Thank
God that we kept getting new physician
opinions. This third ENT saved our son’s
life!”
Our Upper Northwest Parent Guide,
Leslie Hilde, had a similar experience with her daughter who was born with aural
atresia, an ear without a normal opening.
Leslie said she “just wanted it fixed,” but
when a doctor agreed with her and was
willing to do the surgery, Leslie had
misgivings.
“Something was telling me it wasn’t
right,” she said. She did more research on
her own, and realized that the surgery could
cause facial paralysis, since the facial nerve
lies very near the area requiring surgery.
She let go of the idea of trying to fix her
daughter’s ear. A couple years later, she met
a new doctor who offered new hope in the
form of a Baha, a bone-conduction hearing
aid.
“This ENT got it! He understood my
concerns,” Leslie said. “When I asked, he
answered. I wasn’t getting that from the
other ENT. They both know their job and
do it well, but this ENT and I just clicked.”
“Clicking” with your medical provider
is important. Another of our Parent Guides
said she switched audiologists within the
same center just to find one who was “a
better fit.”
Erika King, a speech-language pathologist at the Lions Children’s Hearing & ENT
Clinic agreed that it’s perfectly fine to look
for a professional who fits your family’s
needs.
“Finding the right speech-language
therapist for your child is about ‘goodness of
fit,’” Erika said. “I recognize that I am not
(nor could I be!) the best speech-language
therapist for all children. For example, I am
still not great at sign language. So, if parents
are pursing sign language, I am very up
front about my weakness in that area, and
then I make sure that they connect with a
deaf mentor and more appropriate clinician,” she added. “I would rather hear from
a parent that the relationship is no longer a
good fit, or that they are exploring options
closer to home, than to have the family
feel that they are no longer benefiting from
therapy sessions.”
Minnesota Hands & Voices
focus
Join us at GiGi’s Playhouse
We’re hosting a fun, free playdate for
families with children who have Down
Syndrome and hearing loss. Join us Saturday,
July 20, 2013 from 3 to 4:30 p.m. at GiGi’s
Playhouse in St. Louis Park. See our website,
www.mnhandsandvoices.org, for details.
www.mnhandsandvoices.org
Thanks for your
contribution!
1-866-346-4543
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Disney trips offered
For the sixth year, the Children’s Tree
House is offering Disney World Youth
We rely on your generous support to
Education Series (Y.E.S.) trips Aug. 17-24,
build better lives for children
2013 for families with a parent or child
who are deaf or hard of hearing.
who is deaf or hard of hearing. Families
build packages that work best for them.
Please make a tax-deductible
Park
Hopper® tickets provide admission to
donation today.
Christian music fest interpreted
all four theme parks—Magic Kingdom,
Donate
The Sonshine Christian Music Festival
Animal Kingdom, Epcot Center, and Hollytakes place July 17-20 in Willmar. Most
wood Studios. Prices are $165/3-day pass
of the mainstage performers will be ASL
to $185/5-day pass. For an additional $20/
interpreted. Interpretation is set for all
person, packages can include admission to a
Lions Clinic hosts family meet-up Disney “Fun” waterpark, miniature golf, or
speakers, George Canyon, Family Force
Five, Newsboys, Audio Adrenaline, Lecrae,
sports park. Discounted lodging at Disney
The Lions Children’s Hearing & ENT
David Crowder, Petra, Building 429, Toby
World resorts also is available for $95 to
Clinic hosts a Family Meet-Up Tuesday, Mac, Love Out Loud, Kye Kye, For King & Aug. 6, 2013 in the Children’s Library/
$250 a night. The package includes a Disney
Country, and Skillet. See sonshinefestival.
Y.E.S. interpreted educational program for
Family Resource Center, which is just
com. For interpretation questions, email
Kindergarten - high school students. These
inside the lobby of the Amplatz Children’s
[email protected].
programs give kids a behind-the-scenes
Hospital in Minneapolis. The meetings
experience at a Disney park. Learn more at
give families with young children who have
hearing loss the chance to connect and learn bit.ly/158As4H.
Family event interpreted
about options for managing hearing loss.
The clinic provides snacks, onsite childcare,
ASL instructor/interpreter Debbie
Twins host ‘Deaf Day’ Sept. 8
Lawrence will be interpreting activities at the gas cards and parking vouchers to offset the
The Minnesota Twins host Baseball Day
Maple Grove LifeWay Christian Store (12985 cost of the transportation.
2013 for the Deaf, DeafBlind and Hard
Elm Creek Blvd) during “Celebrate the
School holds golf fundraiser
of Hearing at Target Field Sunday, Sept. 8
Family” weekend July 26 & 27. Debbie will
with specially priced seats in the “Home Run
interpret the new Veggie Tales movie trailer
Northern Voices’ 12th annual Golf
Porch Terrance” area of the stadium. A limited
and and related crafts from 1 to 3 p.m. The
Classic and auction is scheduled for Thursnumber of tickets are available for $16. The
event is free and open to the public.
day, Aug. 15, 2013, at the Wilds Golf Club
Twins are playing the Toronto Blue Jays
in Prior Lake. This is the school’s largest
at 1:10 p.m. Reserve tickets online at www.
fundraiser of the year; all proceeds benefit
Cued Speech classes offered
twinsbaseball.com/dhh by Aug. 30.
children with hearing loss who are learning
The Cued Speech Association of Minne CSD will hold tryouts for families interto talk and listen. You can become a golfer,
sota (CSAM) offers three levels of classes in
ested in signing the National Anthem before the
volunteer, sponsor, or donate to the silent
Cued Speech Aug. 12 and 13 at Gideon Pond auction. See northernvoices.org.
game. Tryouts are July 22, 23, 24 at CSD of
Elementary in Burnsville. Beginner, Cued
Minnesota between 9:30 a.m. and 4 p.m. To
Speech Skills, and Transliterator classes run
reserve a spot, email [email protected].
Fair provides accessible shows
from 9 a.m. to 4 p.m. Classes are $60 for
MDS holds ‘Run for Fund$’
CSAM members, $75 for others. Registration The 2013 Minnesota State Fair held
information is at www.cuedspeechminnesota. Aug. 22 through Labor Day in St. Paul
Metro Deaf School (MDS) in St. Paul
org, or email [email protected]. provides ASL interpretation for the 11 a.m.
has planned a “Run for Fund$: Pitch in
for a Kitchen” 5K walk/run at 9:30 a.m.
Timberworks Lumberjack Show, and, for
Sunday, Oct. 6, 2013 at Como Park. The
the 12:30 p.m. Sean Emery show at the
Saints host ‘Deaf Day’ Aug. 22
Family Fair Stage. To see the full schedule of school is raising money for a kitchen. See
beta.active.com/st-paul-mn/running/
Fair events, go to www.mnstatefair.org. To
The St. Paul Saints host Deaf Day Aug.
22 at 7 p.m. at the Energy Park stadium The request an interpreter for a specific show, call run-for-fund-pitch-in-for-a-kitchen-2013.
651-288-4448. Assistive listening devices can
$10 package ($23 value) includes a general
be checked out from the guest services office MADC conference set for October
admission ticket, Saints hat, and a voucher
with a photo ID/credit card to use during
Save the date for the Minnesota
for a hot dog and pop. To order tickets, go
Grandstand events.
Association of Deaf Citizens’ 60th Biennial
to saintsgroups.com with the password
Conference Oct. 11-12, 2013.
deafday13, or call 651-644-6659.
focus is published bimonthly by
Minnesota Hands & Voices, Lifetrack Resources,
709 University Ave. W., St. Paul, MN 55104
www.mnhandsandvoices.org
651-265-2435(V), 1-866-346-4543 (toll-free)
Toll-free VideoPhone: 1-866-261-0857
E-mail: [email protected]
Newsletter Editor: Audrey Alwell
Information in this newsletter about other
organizations does not imply endorsement by
Minnesota Hands & Voices or Lifetrack Resources.
© 2013 Lifetrack Resources
Minnesota Hands & Voices
focus
www.mnhandsandvoices.org
New book gives parents knowledge, tools
to advocate for children in school
National Hands & Voices has released
a new publication called “Educational
Advocacy for Students who are Deaf or
Hard of Hearing: The Hands & Voices
Guidebook” for families with children
who are deaf or hard of hearing. This
guide outlines the rights of the student
and family, as well as the responsibilities
of those charged with ensuring that a free,
appropriate public education is provided.
This easy-to-read guidebook arms parents
with knowledge so they can obtain the
necessary services and supports in school for their child who is deaf
or hard of hearing. Topics include eligibility for special education,
Individualized Education Plans (IEPs), assessments, and advocacy
strategies.
The book (including shipping & handling) is $34.90, with
discounts for larger orders. See www.handsandvoices.org.
1-866-346-4543
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Auditory Learning:
Research to Practice in Children with Hearing Loss
Audiologists, speech and language professionals, educators,
students, and parents of children with cochlear implants or
hearing loss are invited to attend this one-day workshop Oct.
12, 2013 from 8 a.m. to 4:30 p.m. at the Holiday Inn Bloomington. The $95 course fee is reduced by 50% for parents and
students. See www.fairview.org/Services/Rehab/ContinuingEd/
Register/S_100336.
Interpreter workshop offered
The annual ASL interpreter workshop will focus on interpreting
literature in the classroom. It will be offered Aug. 28 from 8:30
a.m. to 3 p.m. at St. Catherine University’s Continuing Education Conference Center (1890 Buford) in St. Paul. The workshop
is geared toward ASL interpreters and will be presented in ASL,
however, DHH teachers may attend.
The workshop will look at strategies for handling difficult
language in literature, like Shakespeare or Dr. Seuss; how to adjust
Gallaudet offers online genetics course
the interpretation of a text used in multiple grades; the limitations in
The Laurent Clerc National Deaf Education Center at Gallaudet interpretability of literature in the classroom, like reading aloud; and
University has released “Critical Needs of Students Who are Deaf or working with students to broaden their knowledge of cultural norms
Hard of Hearing: A Public Input Summary.” The 18-page document, and language.
developed for educators, academic researchers, service providers,
Registration begins at 8 a.m. The $40 fee includes lunch. The
grant seekers, and policymakers, identifies 14 barriers that deaf and
workshop is offered for .55 CEUs and assumes some knowledge of
hard of hearing children encounter in birth-21 academic environthe topic. The online registration deadline is Aug. 23. To register,
ments. It provides analyses from 1400 comments that were collected go to www.ecsu.k12.mn.us/registration. For registration questions,
from 775 respondents, 85 percent of whom live or work with deaf
contact [email protected] or call 612-638-1529.
and hard of hearing children from traditionally underrepresented
groups. The document and a summary are online at www.gallaudet.edu/ Gallaudet University houses Clerc Center
daily_digest/dhh_critical_needs_survey.html.
Gallaudet University’s federally funded Laurent Clerc National
Deaf Education Center provides information, training, and
Gallaudet offers online genetics course
assistance for parents and professionals who work with children who
Gallaudet University is offering the online course “Genetics
are deaf or hard of hearing. Named after the first teacher of the deaf
and Hearing Loss for EDHI Professionals” from Sept. 9 to Nov. 15,
in America, the center works to improve the quality of education for
2013 for 3.7 CEUs. This course includes basic to more advanced
deaf and hard of hearing children up to age 21 from a wide variety
information on genetics, inheritance, genetic counseling and genes
of backgrounds throughout the United States.
for hearing loss. Registration deadline is Sept. 1, 2013. See details at The Clerc Center currently operates two demonstration schools,
www.gallaudet.edu/Genetics/Genetics_Education/Online_Course_ Kendall Demonstration Elementary School and Model Secondary
Genetics_for_EHDI_Professionals.html.
School for the Deaf. These schools include deaf and hard of hearing
students from infancy through high school. Following the 2008
reauthorized Education of the Deaf Act, the center tests different
Legislature passes bills for mentors, guides
educational strategies to help their students meet academic standards of No Child Left Behind.
As Minnesota’s 2013 legislative session wraps up, the Commis Gaulladet’s website has a section for the Clerc Center, which
sion of Deaf, Deafblind, and Hard of Hearing Minnesotans has
offers information and resources related to the development and
released a summary of bills related to hearing loss that passed.
education of children with a hearing loss. There is information
Highlights include the bill that allows newborn hearing screening
on cochlear implants, how to read to children in ASL, national
test results to be saved, and increased funding for Deaf Mentors
outreach providers, and a collection of Clerc Center publications.
and Parent Guides for children who are deaf, deafblind, or hard
You can visit their website at clerccenter.gallaudet.edu. Find the
of hearing. To see a full list of the related bills that were either
Clerc Center’s Spring 2013 newsletter with school updates, research,
passed or will be voted on again next year, see www.mncdhh.org/
and current projects at http://issuu.com/clerccenter/docs/spring2013.
news/645/2013-legislative-session-wrap-up.
Minnesota Hands & Voices
focus
www.mnhandsandvoices.org
1-866-346-4543
­– 4 –
The View from Here
Southwest
Minnesota Hands & Voices holds its
annual Family Picnic Tuesday, Aug. 13
from 5 to 8 p.m. at Tourtelotte Park on
Mabel Street in Mankato. We’ll provide
a hot dog supper, drinks, and dessert.
This free event also includes a balloon
artist, books, crafts, and door prizes.
RSVP to Parent Guide Kris Hemstock
at [email protected] or
1-888-214-0660.
Southeast
Parent Guide Mary Ellen Bondhus and
Deaf artist Marian Lucas lead art activities for kids from 11:30 a.m. to 2:30 p.m.
at Anderson Center for the Arts in Red
Wing during its Summer Celebration
Saturday, July 13, 2013 from 11 a.m. to
5 p.m. Details on this art fair, art demo
and more at bit.ly/12vVawV.
MSAD celebrates 150 years
The Minnesota State Academy for
the Deaf (MSAD) celebrates its 150 year
anniversary Sept. 26-29, 2013. The schedule
includes a volleyball game, class
parade, football game, gala banquet,
and several meals. Tickets are $100
for all four days, but individual
tickets are available for each event. Additional events not covered
by the general admission tickets
include the 5K run on Saturday
after the football game and a golf
tournament and brunch at the
Legacy Club on Sunday morning.
Registration is required by
Aug. 15. Details and the registration form are on MSAD’s website:
www.msad.state.mn.us/Community/alumni/index.aspx.
As part of the 150 year
celebration, MSAD is selling
custom-printed T-shirts alumni
can order with their names and
graduation year. The school also
has created a coffee table book
of the “Sesquicentennial History
of the Minnesota State Academy
for the Deaf.” Both items can be
ordered at www.msad.state.mn.us.
Minnesota Hands &
Voices hosted a picnic
and program May 18
at Quarry Hill Nature
Center in Rochester.
Families enjoyed a picnic,
games and a chalk
drawing contest. They
ended the day with a
program “Spring around
the Pond” led by a
Quarry Hill Naturalist.
Top: The group learns about
life around a pond.
Above left: The Gasners
Above: The Hansons
Left: Moms and kids watch
as the naturalist explains
how a toad catches food.
Minnesota Hands & Voices
focus
Website showcases best
accommodations for sports
As you sign your kids up for fall sports,
you might be thinking of what accommodations you should request. All children have the legal right to access after-school activities.
Here’s a resource for accommodations in sports
and extra-curricular activities for children with
hearing loss.
In 1996, Dr. Catherine Palmer and
colleagues developed a 90-page resource,
Time Out! I Didn’t Hear You. Excerpts of this
publication are now available on “Supporting
Success for Children With Hearing Loss” at
successforkidswithhearingloss.com/sports.
The site includes a long list of most sports and
suggested accommodations for each type of
competition, like Ear Gear and SuperSeals
protective devices for hearing aids. The site also
features success stories of star competitors with
hearing loss and a short summary of how the
student, parent, coach, athletic director, principal, school-board member, and educational
audiologist can make athletics accessible in the
most comfortable, cost-effective way for a child.
Improve cue skills at camp
Families and individuals who want to
improve Cued Speech skills can attend a
Cue Camp July 26 - 28, 2013 in Chicago,
Aug. 21 - 25 in Maine, or Oct. 3 - 6 in
Virginia.There’s also a family camp in
South Devon, England Aug. 2-4, 2013. Scholarships are available for the U.S. camps.
See www.cuedspeech.org/cue-camps.
ASL taught to care providers
Debbie Lawrence of Easy Signing is
offering an ASL class for professional care
providers Saturday, July 27 from 10:30 a.m.
to 2:30 p.m. in the Community Room at
3777 Park Center Blvd in St. Louis Park.
Email [email protected] or call 612-521-7446 for information.
National park creates ASL
videos for deaf visitors
Yosemite National Park in California
has created five online videos in ASL that
answer questions about the park. There are
videos on requesting an interpreter, the free
access pass, interpreted activities, driving
in Yosemite, and public videophones. You
can find the Deaf Services playlist on their
youtube channel at www.youtube.com/user/
yosemitenationalpark.
www.mnhandsandvoices.org
1-866-346-4543
­– 5 –
Transition
Student appreciates time at University
Editor’s note: Justin graduated last month from the
University of Minnesota. He submitted this piece
earlier this year.
My name is Justin Barlow. I am currently a
senior pursuing a bachelor’s degree in Mechanical
Engineering. I began my college career at RIT
and decided my major should be Mechanical
Engineering at the end of my freshman year.
However, the environment wasn’t very motivating, and I didn’t feel like I could
get going at RIT. I think this was largely due to the peers and their lack of support.
Eventually, I realized that I couldn’t stay in RIT anymore because it was getting too
expensive, and I didn’t want to dig myself deeper in debt, so I left after my sophomore
year.
I had the desire to go back to school and finish my degree, so due to the deaf
waiver program available at the University of Minnesota, I was able to waive my tuition
completely. I also have access to vocational rehabilitation to help out with books and
transportation.
Transportation in the Twin Cities is amazingly accessible, and it is evolving rapidly.
There is currently a project under construction, due to be completed by 2014. This
project is a train that passes through the U of M campus from Minneapolis to St. Paul.
There is also a free campus connector, which really helped me because I was getting
married at the time I entered the U of M and wanted to live off-campus. Without the
ease of transportation, I probably couldn’t go to the U.
The programs at the U of M along with the available accommodations for students
with disabilities are AWESOME. They are a lifesaver for us; they make us learn like
hearing people, but better. When I said better, I really mean it, because they made
learning that easy! As for the campus life, I was a part of the D/HH student ambassadors program for one and a half years, and I loved every moment of it. We had multiple
visions and were able to integrate nearly all of them and execute events with those
visions. Our ongoing projects kept us motivated as students, as individuals, and as team
members. I had huge spiritual growth during my stay at the University of Minnesota,
and I highly recommend this university to all deaf and hard of hearing students out
there. This university has an ability to change people’s life forever.
“Teen Scene” kids pose
by the gate at Valleyfair, where they met
for a fun-filled outing
last month. The group
for teens ages 13-17
who have hearing loss
meets every other
month for outings. For
information, email
[email protected].
Minnesota Hands & Voices
focus
www.mnhandsandvoices.org
1-866-346-4543
­– 6 –
Deaf man on Project Runway
Give a Hand to...
This column features folks who improve the lives of our children
who are deaf or hard of hearing. Let’s give a big hand to...
Marcia Passi and the DHH students of Humboldt High
For the second time, students at Humboldt High School in St. Paul made baby blankets to give to families when a baby’s hearing loss is identified through newborn
hearing screening. The students tied tags to each blanket so the family that received it
would know who made it. Our MNHV Parent Guides give these blankets to families at
their initial visit to welcome them to our community. “
“The project lets these young adults do good work by reaching out to others with
hearing loss,” Candace said. “We could not be more grateful for their handiwork!”
“This was a great project,” said Marcia Passi, from Humboldt. “The kids loved working
on it. It always amazes me the kids who struggle the most in reading just excel at projects
like this and actually correct other kids’ mistakes—a great leveler of the playing field!”
The next season of “Project Runway”
beginning July 18 will feature its first deaf
competitor, Justin LeBlanc. The show has
designers create pieces for a weekly challenge, sometimes even using materials like
plants or food, which are then judged by a
panel of celebrities in a weekly fashion show.
Designers are eliminated weekly until a
winner remains. Justin LeBlanc was born with severe
sensorineural hearing loss and grew up
signing. He received a cochlear implant
when he was 18 that gives him some
hearing, but he still signs. Justin completed
a bachelor’s degree in architecture, but
became interested in fashion when he took
a studio class. He went on to complete a
Master of Design in Fashion, Body, and
Garment from the Art Institute in Chicago
and is currently an assistant professor in the
College of Design at North Carolina State
University. For more information on the
show and Justin LeBlanc, see ww.mylifetime.
com/shows/project-runway/season-12/
designers/justin-leblanc.
New apps alert users to
alarms, track health care
Staff and students in the DHH program at Humboldt High School show the
blankets they made to give to newborns with hearing loss.
Book app teaches signs
A new iPad app produced by an all-deaf
team is both a story and a sign language
tool. “The Baobab” is about the adventures
of a curious little girl, told through colorful
illustrations and ASL storytelling. The app
includes a glossary of 170 English to ASL
words. It was designed based on research
from the Science of Learning Center on
Visual Language and Visual Learning at
Gallaudet University, which is working on
two more storybook apps. For information,
see www.vl2storybookapps.com.
Gerry Hughes, a teacher from Scotland, became the first deaf person
to sail around the world in May
after an eight-month, 32,000-mile
voyage. Read about his journey at
www.facebook.com/GerryHughesQuestlll and http://gerrysmhughes.
com/Challenge-i-428.html.
A couple of award-winning mobile apps
are making life a little easier for people with
hearing loss. A team of computer science students
from California State University-Northridge
won the international SS12: Code for a
Cause competition for a mobile app that
alerts a person with hearing loss to audio
disturbances. “Audio Alert” can interpret
sounds such as sirens, smoke alarms, car
horns or even crying children, and translate
them into flashing lights, vibrations and
texts on a users’ phone. The free app is available at Google Play.
Recently named the winner of the
healthfinder.gov Mobile App Challenge, the
new myfamily app gives families customized
prevention information, tips, and a planning
tool for healthcare. It creates personal health
alerts, keeps track of past medical checkups
and vaccinations, prescription drug reminders, locates health resources, and can teach
the user about the services covered by the
Affordable Care Act. Download the app
through the Apple Store or learn more at
http://lyfechannel.com/healthfinder_app/.
Minnesota Hands & Voices
Minnesota
July-August 2013
focus
—supporting families with kids who have hearing loss—
Make friends at our annual
Thursday, Aug. 1, 2013
5 - 8:30 p.m.
Como Park Midway Pavilion
(Midway Parkway & Horton Ave.)
• Dinner: Famous Dave’s BBQ • U of M Raptor Center’s birds of prey • Face Painting & Games • Door Prizes!
Please RSVP by Monday, July 29:
Picnic RSVP
Las familias reciben una mayor comprensión cuando piden segundas opiniones
Cuando necesita tomar una decisión
importante, normalmente se busca consejo
de diferentes tipos. Lo mismo debería aplicar
cuando usted necesite decidir sobre si una
terapia o cirugía en específico son las adecuadas para su hijo con pérdida auditiva.
“Algunas veces, usted simplemente
necesita escuchar la misma información de
otro profesional para que tenga mas sentido y
usted se sienta cómodo con esa decisión”. Dice
Candace Lindow-Davies, coordinador de
Manos y Voces de MN. “Algunas veces, quizá
encontrara nueva información al respecto”.
Candace sabe que a veces puede ser
incomodo para los padres decirle al audiologo
o cualquier otro profesional de la salud que
quieren una segunda opinión. “No quieren
ofender a la persona, especialmente si ya han
establecido una relación”. Candace. Pero la
mayoría de los profesionales médicos quieren
que los padres obtengan toda la información
que necesiten para que tomen decisiones bien
informadas.
“Invito a las familias a que busquen una
segunda opinión”, dice Melissa Ferrello,
audiologa de Amplatz del Hospital del Niño
de la Universidad de Minnesota. “A veces
las familias se sienten culpables cuando me
preguntan sobre la posibilidad de ir a otro
centro, pero no deberían. Muchas de las
opciones quirúrgicas (como un procesador
osteointegrado o implantes cocleares) son
cirugías electivas y la decisión se debe hacer
en equipo, y lo mas importante, una decisión
familiar. La familia tiene todo el derecho de
buscar opiniones diferentes profesionales”.
Padre guía Brenda Hommerding tiene unas
niñas gemelas con perdida auditiva, y ha
tenido el doble de oportunidades para buscar
por segundas opiniones, y ella dice que eso le
ha ayudado en la mayoría de las situaciones.
“Si las dos recomendaciones son la
misma, entonces usted se esta moviendo en
la dirección correcta”, explica Brenda. “Si las
recomendaciones son diferentes, entonces
pero cuando el doctor estuvo de acuerdo con
quizá usted debería pensar muy bien las cosas
o hasta buscar otra opinión”. Ella compara
ella y estaba dispuesto a hacer la cirugía, Leslie
el pedir una segunda opinión con tener la
tuvo sentimientos encontrados. oportunidad de repetir un examen – su
“Algunas veces me decían que algo no
entendimiento del material mejora para la
estaba bien” Leslie. Ella investigo más por su
segunda oportunidad. Ella motiva a los padres
cuenta, y encontró que esta cirugía podría
a que confíen en sus instintos – si sienten que
causar parálisis facial, ya que el nervio facial
algo no esta bien, busquen otra opinión.
esta muy cercano al área donde se requería
Una mama en nuestra comunidad
la cirugía. Ella decidió desechar la idea de
encontró que la segunda opinión no era sufiarreglar el oído de su hija. Un par de años
ciente. Ella confió en su instinto y busco una
después, conoció a un nuevo doctor que le dio
tercera opinión, la cual salvo la vida de su hijo.
esperanzas en la forma de BAHA, un aparato
Cuando la evaluación del retraso físico en su
auditivo hueso – conductivo. “Este otorrino lo
hijo para un implante coclear preocupa por las
tiene! El entendió mis preocupaciones”, Leslie.
largas infecciones, ella y su esposo fueron con
“Cuando pregunté, el respondió. Yo no tenía
otro doctor porque sentían que su hijo estaba
eso con el otorrino anterior. Los dos saben cual
“perdiendo tiempo preciado de lenguaje”. El
es su trabajo y lo hacen bien, pero con este
segundo doctor estaba ansioso por programar
otorrinolaringólogo simplemente hice clic”.
una cirugía para los implantes, sin tomar en
Cliquen: con tu doctor es importante.
cuenta el historial de infecciones.
Otro de nuestros Padres Guías dijo que
“Este otorrinolaringólogo era impaciente
cambiar de audiólogos dentro del mismo
y no se tomo el tiempo de contestar todas
centro puede ser suficiente para “encontrar un
nuestras preguntas y estaba listo para el
mejor fit”.
siguiente paciente en segundos después de
Erika King, patóloga de habla y lenguaje
decirnos que el quería programar la cirugía”,
de la clínica “Lions Children’s audición y otordice la madre. Entonces la familia busco por
rinolaringología” esta de acuerdo de que esta
un tercer doctor. “Este otorrino, se tomo
totalmente correcto el buscar por un profeel tiempo de hablar con nosotros sobre los
sional medico que se ajuste a las necesidades de
reportes de los otros otorrinos, nos pregunto si
su familia.
podría hacer una tomografía”. La tomografía
“Encontrar al terapeuta de habla y lenguaje
mostro una anomalía en el oído de su hijo que
indicado para su hijo o hija esta ligado con que
detuvo el flujo normal del fluido por el tubo
tan buena es la química que se tenga”. Erika.
de Eustaquio. Su mastoides estaba llena de
“Reconozco que yo no seré la mejor terapeuta
infección que se estaba comiendo el hueso y el
de habla y lenguaje para todos los niños. Por
tímpano y las membranas que cubren el cerebro. ejemplo, aun no soy muy buena en lenguaje
“El pudo haber muerto si la infección hubiera
de señales. Entonces, si los padres están
llegado al cerebro”, explica la madre. “Gracias a
enfocándose en leguaje de señales, yo seré muy
Dios que seguimos buscando opiniones de dife- sincera sobre mi debilidad en esa área, y me
rentes doctores. Este tercer otorrinolaringólogo
asegurare de conectarlos con un mentor sordo
salvo la vida de nuestro hijo!”
y el personal mas indicado”, Erika. “Prefiero
Nuestro Padre Guía de la parte alta del
escuchar de un padre que la relación no esta
Noroeste, Leslie Hilde, tuvo una experiencia
funcionando ya, o que están explorando otras
similar con su hija, quien nación con atresia
opciones mas cerca de casa, que el que la
aural, un oído sin una entrada normal. Leslie
familia sienta que ya no se esta beneficiando de
dice que “ella solo quería que lo arreglaran”,
las sesiones de terapia”.