Family Advocate
February/March 2012
The Family Advocate is a quarterly newsletter from the Center for Disability Studies in
Literacy, Language and Learning, sent to families of students involved in our Literacy and
Communication projects, as well as other interested families and educators.
In This Issue:
Welcome
Communication Partner
Modeling – Part II
Consumer Choice Options
Spotlight on Transition
The Family Voices:
Jacob Olson Family
Recommended Reading
We hope that you are finding 2012 to be filled with possibilities for your child! We,
at the Center, remain committed to literacy, communication and full participation
for all children. The last two months, our family events throughout the state have
focused on using communication devices to write poetry and make comments about
wordless picture books. We continue to stress the importance of peers and adults
modeling the use of a communication device so that the students see its
communicative purpose.
In this Family Advocate we attempt to answer some questions that you might have
as you begin to model the use of your child’s communication system. Hopefully, it
demonstrates to you that perfection is not required so much as commitment! You
will learn about alternatives for using waiver dollars from Holly Wegter from
Veridian Credit Union’s Consumer Choice Option. This quarter we have added a
“Spotlight on Transition,” to provide information as our kids move from one class
to another, or into postsecondary options. We always recommend that students be
given access to books that are age-appropriate and offer a variety of books that your
child might enjoy. Additionally, we have recommended some great books for both
children and adults to read. Finally, Our Family Voices section focuses on Jacob
Olson’s family who will share stories of his growth as a result of his involvement in
the literacy project last year and the communication project this year.
As always, I am committed to advocacy and sharing information with families. If
you are unable to attend a family event and would prefer that I visit with you one on
one, please don’t hesitate to contact me! Happy reading!
SUSIE
PLEDGE & BE HEARD
Susie Lund,
Family Coordinator
Center for Disability
Studies in Literacy,
Language and Learning
(319) 273-2728
slund@uni.edu
Over 200,000 people have taken the online pledge to end using the derogatory
R-word. Why? According to www.r-word.org, “The R-word hurts because it is
exclusive. It’s offensive. It’s derogatory. The R-word is hate speech…The
R-word is hurtful when used in jokes or as part of everyday speech.”
Be the next one to take the pledge and turn your commitment into action!
2
Communication Partner Modeling:
Q & A of Using a Communication System with Your Child
Whether your child is using a Pragmatically Organized Dynamic Display (PODD), Dynavox, iPad or some other
Augmentative/Alternative Communication (AAC) system, we cannot stress enough the importance of modeling its
use through aided language stimulation.
Q: What is aided
language
stimulation?
A: Aided
language
stimulation is a
strategy to help
individuals
using AAC to
understand the
communication symbols in their
device. The communication partner (you), talks about
normal, everyday activities while pointing to
corresponding picture symbols on the child’s display
(Goossens’, Crain, & Elder, 1992).
Q: Why is aided language stimulation important?
A: Often we make the mistake of giving a child in need
of a communication system a device and ask them to use
it without modeling. Think about how much a typically
developing child sees and hears language before they are
able to use it efficiently. The same concept applies to a
communication system. Users need to see the system
modeled in order to learn the language of the AAC
system and to understand how it is supposed to be used.
Q: It’s overwhelming! Why are there so many
words?
A: Comprehensive AAC systems need to have enough
language vocabulary to be able to say what you want to
say when you want to say it (Sennott, Burkhard,
Musselwhite, & Cafiero, 2010). If there is only a small
number of vocabulary items available, it limits the users’
ability to communicate a variety of ideas.
Q: How do I start?
A: Typically devices are set up with the most frequently
used words displayed together. Begin just by using
those icons throughout the day.
It is perfectly fine to touch
“go” while saying, “It’s
time for us to go to the
store now!” Try to get in
the habit of using the
device to model the phrases
you find yourself saying
often to your child.
Q: This is hard! Shouldn’t I just leave this to the
professionals?
A: Remember that having the ability to communicate is
a very important life skill for your child. It takes time
and effort to build a communication community that can
introduce and support your child’s success with an AAC
system. An important part of the modeling process is
for your child to witness you attempting to use the
system as well even if you make mistakes. When you
make a mistake, you can model by touching the “oops!”
or “go back” buttons when you don’t find what you want
to say. As a result you and your child can learn the
language of the AAC system together.
3
Resources for Families
The Consumer Choices Option (CCO) program offers
Iowans who are eligible for Medicaid Home and
Community Based Service waivers more choice and
control in managing their daily lives. Each member
who chooses to participate in the CCO program works
with their case manager to identify their needs and create
a plan that meets those needs. Next they work with an
Independent Support Broker to create a budget based on
that plan. The plan and budget are created for each
individual, allowing the member and their loved ones to
have a voice in the type of care they receive.
One great example of the CCO program allowing
individuals more freedom in how their care is provided
is Anlynn. She has serial castings on her legs, which
requires her to be in two casts at once for three to four
weeks at a time. Once her casts are off, Anylnn is able
to use some of her CCO dollars for dance lessons. These
dance lessons are so important to Anlynn to help
strengthen her legs in the
healing process. Her
mom knows that dance
lessons motivate her in a
way that traditional
therapies may not.
Veridian Credit Union is the
Financial Management
Service for the Consumer
Choices Option program.
For more information, go to
www.ime.state.ia.us/HCBS/HCBSConsumerOptions.ht
ml or contact the Consumer Choices Option department
at Veridian Credit Union at 800-235-3228 ext 6775.
Spotlight on Transition
Dare to Dream – Set Goals and Aim High!
Empowering families may be
the most critical aspect of the
transition planning process
for students with
developmental disabilities.
(Simonsen, n.d.)
If you have a child age 14 or
older, you have begun to talk
about transition at his or her IEP meeting. As you begin
the process of transitioning from the world of high
school to postsecondary, we would like to highlight how
critical the family’s high expectations are to the
transition process.
1. Parents’ expectations are strongly associated
with their youth’s achievements (Wagner, et al.,
2005). What you as a parent believe your child
will achieve, whether the bar is set high or low,
your child will likely achieve.
2. Increased expectations relate to increased high
school completion rates and postsecondary
education attendance (Wagner, et. al., 2007)
Your higher expectations mean that your child is
more likely to finish high school and move on to
post-secondary education.
3. Just having a goal of attending a 2-4 year
college is related to the likelihood of postschool employment (Grigal, et. al., 2011). As
you think about the future for your child, if you
include postsecondary education in that goal,
your child is more likely to have employment
post-school.
4. Employment during high school (paid or
unpaid) was a predictor of successful postschool employment (Landmark, Ju, & Zhang,
2010) Consider any kind of volunteer
opportunities as a valuable option if paid work is
not feasible. It could lead to integrated
employment in the long run!
5. The strongest predictor of integrated
employment outcomes was having a PARENT
WHO ASKED FOR IT! (Simonsen, n.d.) If
you, as the parent, ask for opportunities for
integrated employment (people with and without
disabilities working together), your child is more
likely to accomplish this!
4
The Family Voices: The Olson Family
“His Personality Has Really Bloomed”
I met Jacob’s mother,
Dawn, last year at a family
event. When we met for
lunch, Dawn painted a
picture of what it has been
like for her to be Jacob’s
mother. She spoke of
health issues, surgeries
and all the worries she
has about Jacob’s future.
She chose not to send
Jacob to school until the
age of 7 because she wasn’t sure what he
would even get out of school. Now, as a fourth grade
student in his second year of the literacy project, Dawn
speaks highly of all the progress Jacob has made. “His
personality has really bloomed,” she remarked, “And he
shows us each day how much more he knows than we
thought possible.”
Because his general and special education teachers coteach for literacy instruction every day, they are able to
prepare for Jacob’s participation. For example, his
special education teacher will program a switch ahead of
time to help Jacob share his thoughts. He also has a GoTalk™ with phrases such as, “that’s interesting!” or
“could you tell me more about that?” to help him
contribute during discussions. Jacob expresses his own
thoughts and ideas using a Pragmatically Organized
Dynamic Display (PODD). All throughout the day his
teachers, associates and fellow students model
communication for him using the PODD as well. Dawn
remarks, “It’s just kind of neat. The kids are recognizing
that he can talk…just not verbally!”
Dawn remarked how
she knows that
Jacob is a lot smarter
than other people
think. She
recounted a story to
me of a health
appointment in
which the doctor
treating Jacob would
not believe that Jacob
intentionally communicated. He repeatedly denied that
Jacob could indicate that he wanted more cotton candy
or that he enjoyed a story about dinosaurs. Dawn is now
determined to videotape these new developments in
order to prove it to the doctor!
Why has Jacob
accomplished
so much?
Dawn’s good
friend
remarked, "His
mother is the
main reason but
also the love of
this family that
surrounds him
and supports him on a
day-to-day basis. Never giving up and never giving in to
all the 'gloom and doom' things that they were always
told."
Dawn adds, “We’ve had the right teaching,” she replies.
She understands that both general and special educators
alike can learn to communicate with Jacob and that he
really does understand. Her advice to other parents is
“even though you may think your child can’t
communicate with you, they really can. You just have to
give them a chance. They do have a lot of knowledge,
they just haven’t been
taught how to express
it.”
5
RECOMMENDED READING
For Young Readers:
 My First Graphic Novel Series by Capstone Press
 Elephant and Piggie by Mo Willems
 Bone Series by Jeff Smith
 Amulet Series by Kazu Kabuishi
 Big Nate Series by Lincoln Peirce
Some books to view at www.tarheelreader.org
Bike Titles
 Flying with Dirt Bikes by Kyle
 Dirt Bikes Rock by jw58208
 Dirt Bikes are Fun by Ruthie
Snow Titles
 How to Make a Snowman! By tales
 Snow by BH
 Snow Day by huberae
For Adult Readers:
Raising Blaze by Debra Ginsberg
Booklist Review
Learning disabilities, autism,
perseveration, inappropriate
behavior, ADHD, resistance, and
Asperger's Syndrome are a few of
the terms bandied about in the
meetings Ginsberg has with her son's
teachers, beginning with the first day
of kindergarten through sixth grade,
where her book ends. Blaze, born to a single mother,
was oxygen-deprived at birth. Cared for by his mother
and her close-knit family, the fact that his development
followed no norms was viewed as a charming quirk until
he reached the classroom. A more apt title might be
Schooling Blaze," since that's where most of the conflict
lies. His mother finally realizes that her son does
have problems, but securing a diagnosis and appropriate
educational support proves nearly impossible. Each
school year brings new sets of problems, and success in
one grade does not translate to a smooth beginning for
the next. Through commitment and dedication, Ginsberg
manages the frustrations and the joys of raising and
educating her unusual son, and her account of her
struggle is both inspiring and disturbing. Danise Hoover
Copyright © American Library Association. All rights
reserved –
Amazon.com Review
Expecting Adam is an
autobiographical tale of an
academically oriented Harvard
couple who conceive a baby with
Down's syndrome and decide to
carry him to term. Despite
everything Martha Beck and her
husband John know about
themselves and their belief system,
when Martha gets accidentally pregnant and the fetus is
discovered to have Down's syndrome, the Becks find
they cannot even consider abortion. The presence of the
fetus that they each, privately, believe is a familiar being
named Adam is too strong. As Martha's terribly difficult
pregnancy progresses, odd coincidences and paranormal
experiences begin to occur for both Martha and John,
though for months they don't share them with each other.
Martha's pregnancy and Adam (once born) become the
catalyst for tremendous life changes for the Becks.
Focusing primarily on the pregnancy but floating back
and forth between the present and recent and distant
past, Martha Beck's well-written, down-to-earth, funny,
heart-rending, and tender book transcends the cloying
tone of much spiritual literature. Beck is trained as a
methodical academician. Because of her step-by-step
explanation of her own progress from doubt to belief,
she feels like a reliable witness, and even the most
skeptical readers may begin to doubt their senses. When
she describes an out-of-body experience, we, too, feel
ourselves transported to a pungent, noisy hawker center
in Singapore. We, too, feel calming, invisible,
supporting hands when she falls. Yet, whether or not
readers believe in Beck's experiences is ultimately a
moot point. There is no doubt that Adam--a boy who
sees the world as a series of connections between people
who love each other--is a tremendous gift to Beck, her
family, and all who have the honor of knowing him. -Ericka Lutz
6
The Center for Disability Studies in Literacy, Language and Learning was established in
December 2009, as a collaborative effort of five faculty members with research interests and
expertise in working with children with significant disabilities .
Center Vision:
Literacy, Communication & Full Participation for All
Center Mission:
The Center accomplishes its vision through Professional Development, Advocacy, Research and
Systems Change.
 Professional Development: Guide and support highly qualified and committed educators.
 Advocacy: Support knowledge and action for individuals, families and professionals.
 Research: Advance practices and knowledge related to literacy and communication for all.
 Systems Change: Collaborate with individuals and organizations to impact practice.
Faculty Members:
 Evette Edmister, Assistant Professor of Communication Sciences and Disorders
 Jennifer Garrett, Assistant Professor of Communication Sciences and Disorders
 Chris Kliewer, Full Professor in the Department of Special Education
 Amy Petersen, Assistant Professor in the Department of Special Education
 Amy Staples, Associate Professor in the Department of Special Education
Supporting Team Members:
Tricia Frericks – SLP/Clinical Supervisor
Lora Hickman – Program Coordinator
Beth Huber – Researcher
Jen King – Communication & Marketing Specialist
Susie Lund – Family Coordinator
Graduate Assistants
AT/SLP Support Personnel