CENTER FOR DISABILITY STUDIES IN
LITERACY, LANGUAGE & LEARNING
Jan/Feb/March 2011
“Even when things go well, it is still exhausting…”
In This Issue:
Family Voices:
Nate & Jean Trainor
Film Review of
Wretches & Jabberers
Suggested Winter Reading
Parent Educator Connection
CDSLLL Resources
A father made this statement during a luncheon meeting to discuss issues
facing parents of children with complex needs. The meeting was part of a
breakout session at the TASH national conference in Denver, Colorado in
December 2010. TASH encourages “equity, opportunity and inclusion” for people
with disabilities. The father was speaking of an IEP meeting for his seven-year-old
son. Heads around the table nodded in agreement. Other parents gave examples
of issues facing their adult children in the areas of employment, independent living
and developing relationships in the community.
We, at the Center, are convinced that teaching children with complex
needs to read, write and communicate is an urgent need in order for them to grow
into an adulthood that will be satisfying for them. Parents often have knowledge
gained from experience that can be helpful when shared with others. In this issue,
we are excited to introduce a section called The Family Voice that allows families a
forum for sharing. Thanks to Jean Trainor, and her grown son, Nate, for leading
off with their writings about the joys and independence that came with learning to
communicate. Also in this issue, we highlight one of the agencies in Iowa that
assists parents in becoming effective partners for their children’s education. Lastly,
read the review of the upcoming documentary Wretches and Jabberers, coming to
Iowa City on March 7th along with an exclusive interview with one of the show’s
stars: Larry Bissonette.
As always, we at the Center remain committed to helping teachers learn
how to teach all children to read, write and communicate. My role is to serve you
and to find out how you may need more support. Please, never hesitate to contact
me…I’d be glad to buy you a cup of coffee when we are in your town in order to
visit with you more.
March 2, 2011 – Third Annual
“Spread the Word to End the Word Day”
Susie Lund,
Family Coordinator
Center for Disability
Studies in Literacy,
Language and Learning
(319) 273-2728
slund@uni.edu
Across the United States and around the globe, young people
on college campuses, in high school cafeterias and corporate
offices have joined a movement of mutual respect and human
dignity called Spread the Word to End the Word. The goal: get
people to stop and think about their hurtful and disparaging use of
the word “retard” and pledge to stop using it!
For more information visit:
http://www.special Olympics.org/03-31-09_Spread_the_Word.aspx
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"We Free Voices So Hearts Can Dream"
The title to this article is a quote my son had engraved
on a bracelet for me for Christmas. That may not seem
like an amazing accomplishment for a 26 year old
young man. However, this young man was labeled as
"severely and profoundly retarded" at the age of two.
Hi, my name is Jean. Who would have imagined 24
years ago that my son Nate would be where he is
today? You see, Nate is nonverbal and types to
communicate. He just began to type in February,
2006. Nate is a "teacher". Nate's dream is "to teach
others to type".
Nate started school at the age of two with his label of
"severely and profoundly retarded" at a segregated
school for children with disabilities. When Nate was six
I heard this school was going to close and I had no
idea what else was available for him. We discovered
Hansen Elementary School in Cedar Falls, where
children with disabilities are included in regular classes
with their typical peers. Nate transferred to his
neighborhood school, West Cedar Elementary in
Waverly, in second grade. He completed high school
with his class in 2003.
I am so grateful that Nate was included throughout his
school career. He was part of an academic learning
environment even though he had no meaningful way
to communicate at the time. As a result he was able
to learn a variety of skills including the ability to read
and write. Nate's comment on this is, "I want to say
that I was able to read and write".
Nate created a PowerPoint presentation recently about
his life and facilitated communication (FC). Some
excerpts follow:
My name is Nathan Trainor. I would like to tell
you how facilitated communication gave me an
awesome, easy, real life. Facilitated
communication easy way to say what I want. I
live in my own duplex. I live with awesome
friends free from dear mom. We are friends; we
go places, rent movies, have a beer - they treat
me as an easy friend.
I am very awesome and busy. I work at the ‘W’,
volunteer at a school and church, present, go to
stores, exercise and see lots of people. I
Nate Trainor
like to eat at restaurants, read easy books on
disability and facilitated communication, swim in
my pool, fast go-karts and ride in my ‘feel free’
convertible. I like adventure. SeaWorld is my
best vacation. Mom lets me choose my
destinations. We are great friends. My mom
and I are advocates for people with disabilities;
I was a dead advocate without facilitated
communication. I want to tell you how easy
facilitated communication has given me a dear
great free life.
No Communication was a sad way, real reason
I was treated incompetent. I would go without,
like when I wanted a drink.
Facilitated Communication has given me
awesome respect. It has erased the dead
silence, given me opportunity for dear friends,
friends fear of dead incompetence gone.
Don’t waste your dreams – treat them with
respect. Communication (FC) is an awesome
way to establish your dreams. Freedom is
respect and this can only happen when people
weigh the consequences away from themselves
long enough to take the time to see …… I am
here.
Nate Trainor
Feel free to contact us at:
Nate Trainor – ntrainor@mchsi.com
Jean Trainor – jtrainor@mchsi.com
3
significant disabilities. Larry was put into an
institution at age 6 where he remained into his
adulthood. While times are changing, Larry pointed
out that he and Tracy still face discrimination. He
explained, “Old attitudes about disability are still
booking flights slowly to lands of acceptance.”
Wretches and Jabberers, a new documentary movie
exploring disability issues through the eyes of two
men with autism, is currently being shown in select
theaters and at film festivals around the world. The
film is scheduled to show in Iowa City on March 7th at
the Englert Theatre at 7:00p.m. (subject to change).
Talking continues to be a struggle for both Tracy and
Larry. But both men learned as adults to
communicate by typing on a keyboard. This
alternative communication method is better suited to
their particular communication needs than is speech.
One of the central points of the movie is: Not being
able to speak is NOT the same as not having anything
to say. Tracy and Larry are now understood to be
intelligent individuals. Their world tour message is
that the same possibility exists for others who also
struggle to speak in understandable ways. Larry is a
recognized artist. In our interview he noted that the
movie will allow people to now “see my personality
behind my art.”
The film tells the story of Tracy Thresher, 42, and
Larry Bissonnette, 52, as they embark on “the autism
world tour.” Their mission is to change peoples’
attitudes about autism and disability. With support
personnel, Tracy and Larry travel to Sri Lanka, Japan
and Finland. At each stop, they spend time visiting
with the public including people with disabilities.
They want to challenge and change beliefs about
what it means to belong and be a valued member of
the community. We conducted an interview with
Larry through email. Using poetic language he told us
that he hoped the movie would help the audience
“see themselves in our experiences and look at
disability as one side of the same human collection of
multi-colored stamps.” Larry wants people to
understand that we can all relate to one another
regardless of disability labels.
Between encounters with people labeled with
disabilities, parents, and others, the movie shows
Tracy and Larry exploring local sights and culture;
dipping and dodging through Sri Lankan traffic,
discussing the purpose of life with a Buddhist monk
and finally relaxing in a traditional Finnish sauna.
Along the way, they reunite with old friends, expand
the world of a talented young painter labeled with
autism, and forge new relationships in their cause.
Larry, in our interview, noted that he and Tracy had a
great deal of say in the script of the movie. Larry
explained, “I was operating on lots of totally proud
waves of excitement initially and throughout the
project as I could see how Tracy and I used our typed
words to drive the story.” The film is a moving tribute
to personal struggle that always rings with
intelligence, humor, hope and courage.
From early childhood, both Tracy and Larry could not
speak in a way that made sense to people around
them. Their struggle with speech led people to
believe that Tracy and Larry also could not think or
understand very well. At the time families had few
options for children with disabilities. Tracy was sent
to a school just for students thought to have
Wretches and Jabberers was directed by Academy
Award winner Gerardine Wurzburg. The soundtrack is
original and is filled with internationally recognized
acts including among others Nora Jones, Judy Collins,
Carly Simon, Steven Stills (of Crosby, Stills, Nash, &
Young) and Bob Weir (of the Grateful Dead).
4
Winter is a great time to curl up with your child and a
good book. Here are some titles of books you may
want to read with your family.
From * www.tarheelreader.org :
1. Winter is Fun! By BH (author works at Center!)
2. Snow by BH
3. Who Likes Snow? By Wendy
4. Winter is Fun! By Rapalzer
5. A Minnesota Winter Alphabet
6. www.tarheelreader.org is a website provided by
The Center for Literacy and Disability Studies of
UNC that allows books to be read out loud,
pages turned using switches, books to be
downloaded on powerpoint to be printed or
saved for students’ viewing pleasure.
Winter Picture books for children 4-8 years old:
1. Froggy Gets Dressed, by Jonathan London
2. The Snowy Day, by Ezra Jack Keats
3. Amy Loves the Snow, by Julia Hoban
4. Puffins Climb, Penguins Rhyme, by Bruce
McMillan
5. Bear Snores On, by Karma Wilson
Picture Books for Older Children
1. Snowflake Bentley, by Jacqueline Briggs Martin
2. And Tango Makes Three, by Justin Richardson
and Peter Parnell
3. Ice Bear and Little Fox, by Jonathan London
The Parent and Educator Connection (PEC) encourages
meaningful parent involvement in education. Each of
the nine Area Education Agencies (AEAs) has a Parent
Coordinator and an Educator Coordinator. The Parent
Coordinator is a parent of a child with a disability who
understands special education and other disability
issues from the parents’ perspective. The Educator
Coordinator partner is an AEA staff person with a
special interest in parent/educator relationships and
the implementation of the child’s educational program
described in the IEP. The parent coordinator will meet
the parents’ needs in a variety of ways, which could
include helping: prepare for an IEP meeting;
understand the process; inform them of their rights
and responsibilities; and communicate their child’s
needs effectively. The coordinator may, on specific
occasions, attend IEP meetings as a champion of the
IEP process. The PEC coordinators know the steps that
must be followed according to IDEA legislation.
Other activities and resources available to parents and
educators from the PEC include: access to a resource
library on disability related topics and periodic training
opportunities available at your local AEA. The PEC
should be seen as a resource for both families and
educators because their commitment is to ensuring
that the IEP process leads to the best outcome for the
child. Visit your local AEA website for more
information on the PEC in your area.
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
Faculty Members:
Dr. Evette Edmister is an Assistant Professor of Communication Sciences and Disorders at UNI.
Dr. Jennifer Garrett is an Assistant Professor of Communication Sciences and Disorders at UNI.
Dr. Chris Kliewer is a Full Professor in the Department of Special Education at UNI.
Dr. Amy Petersen an Assistant Professor in the Department of Special Education at UNI.
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Dr. Amy Staples is an Associate Professor in the Department of Special Education at UNI.
Supporting Team Members:
Grad Assistants – Assist with data collection and
analysis and help develop AAC devices.
Susie Lund – Family Coordinator
Beth Huber – Researcher
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- Tricia Frericks – SLP/Clinical Supervisor
- Lora Hickman – Program Coordinator
- Jen King – Communication & Mktg Specialist
- AT/SLP Support Personnel