November/December 2011
In This Issue:
Welcome
Communication Partner
Modeling
The Family Voices:
The Donnelly Family
Better Meetings,
Better Outcomes
Resources for Families
Recommended Reading
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.
Autumn Greetings! In my work as Family Coordinator at the Center, I have
had the pleasure of meeting many parents whose children are involved in
our research projects. This is the third year of the Literacy Project and the
second year of the Communication Project. The following table details the
number of professionals, students, families and schools that have taken
part in these projects in the last three years:
Group
Professionals
Students
Families
Schools
Number
148
226
84
23
My goal is to visit each of our current sites a total of four times during this
school year to meet with families. Our family events will include fun
activities that support literacy and communication at home. I strongly
encourage you to attend a family event, however, I would be happy to
accommodate your family needs with a one on one visit. Please let me
know how I can best assist your family!
Please call me at 319.273.2728 or e-mail me at slund@uni.edu if I can be of
assistance between family events. I am here to help you and your family!
Susie Lund,
Family Coordinator
Center for Disability
Studies in Literacy,
Language and Learning
(319) 273-2728
slund@uni.edu
Sharing the Joys
One of our Center’s objectives is supporting parents’ efforts in
advocating for their children. Recent research in the field of social work
has begun to focus on how families succeed rather than on how they fail.
There is a need for research that looks at the positive and joyous aspects
of parenting a child with disabilities. Keeping this in mind, we want to
hear from you! What are the joys that you get to experience as a result
of having a child with a disability? Please email your stories to
slund@uni.edu so that we may feature you in future Family Advocate
Newsletters.
2 Communication Partner Modeling: The Importance of Aided Language Stimulation By Julie Freed, M.S., CCC‐SLP/AAC Consultant with Grant Wood Area Education Agency For years we have understood the importance of talking to young children in order for them to learn to speak. Even before babies can speak to us, we talk and interact with them! Children who do not develop typical speech and language abilities may use augmentative/alternative communication (AAC). Simply providing the needed AAC device is not enough for these children to learn to communicate. We need to provide direct instruction/ modeling in order for them to learn to pair speech with the language symbols. Sufficient time must be invested by teachers/parents/communication partners for the children to learn the language of the AAC system, with the ultimate goal for them to use AAC to communicate with others. Unfortunately, we as communication partners are often not sure how to help our children use these devices to develop language. We recommend using aided language stimulation to promote language and communication. Aided language stimulation is a strategy to help individuals using AAC to understand the symbols in their devices. Understanding the symbols makes it possible for the child to use the device to develop language and communicate. The strategy allows for the communication partner to point to a picture/word symbol while simultaneously speaking. This improves the understanding and eventual use of that same communication system by individuals with complex communication needs (Harris & Reichle, 2004). If our expectation is that they will understand verbal speech and eventually use an AAC system, then it is critical that we, as communication partners, understand the language system ourselves and model the use of spoken language and relate it to the symbols on their AAC system. In essence, it is crucial that we take time to “model” and/or “teach” the “language” of their AAC system/device so that they can learn the “language.” It is important to realize that this manner of learning language and learning to speak through an AAC system is challenging. We must recall that in typically developing children, the development of speech and language is a process that occurs over the course of many years. A similar time period, if not greater, may be needed for the acquisition of an AAC language system even when we begin using aided language stimulation techniques. It is our challenge, as communication partners, to not grow weary in supporting these individuals who greatly depend on us to provide to them opportunities needed to learn a language system that hopefully one day they will use to communicate with us! For more information about aided language stimulation visit www.scoop.it/t/aided‐language‐input Bibliography Goossens', C., Crain, S., & Elder, P. (1992). Engineering the
preschool environment for interactive symbolic communication
18 months to 5 years developmentally.
Birmingham, AL: Southeast Augmentative Communication
Publications.
Harris, M. D., & Reichle, J. (2004). The impact of aided language
stimulation on symbol comprehension and production in children
with moderate cognitive disabilities.
American Journal of Speech Language Pathology, 13, 155-167.
3
The Family Voices: The
Donnelly Family
“Always Look at the Possibilities, Not the Limitations” Davis is a 10 year old, fourth grader. He loves music, watching movies, going for walks and swimming. He takes part in Wednesday night church activities, goes golfing with his dad, Shawn, and is an avid swimmer in the Special Olympics. This summer, he took his first ride on a bike. His mother, Rita, describes him as a bright, funny little guy with a kind heart and great social skills. Every waitress at the local Applebee’s is on a first name basis with Davis! His parents’ vision is for him to be able to take whatever path he chooses. They hope for him to have a happy life, be an active member of society and be as independent as possible. They hope for him to be able to read, write and comprehend like others around him. They know that acquiring these skills may help him have a more fulfilled life. This is why Rita is so excited that Davis is now in his third year of the Iowa Literacy Project. Davis became involved in the Literacy Project at seven years of age. Prior to this, Rita described him as not overly excited about books or reading, in general, and having a fairly short attention span. Since he has taken part in the Literacy Project, his parents find him sitting in his room, reading books to the family dog. He notices words all around him and reads the print on signs around town as well as titles and names on movies. His parents see him as having great potential as he moves forward as a reader and writer. Reading is opening the door for Davis to have many different and expanded experiences. When asked for advice for other families of children with special needs, Rita expressed that communication with teachers and other parents is essential. She feels that the support their family has received from friends and family has gotten them through a lot of challenges. Their family strives to always look at the possibilities rather than the limitations. “The sky’s the limit,” Rita comments. “We don’t know what life holds for Davis, but he has certainly been a blessing in our lives.” 4 Better Meetings,
Better Outcomes
In working with families across the state of Iowa, one thing is clear: IEP meetings can be sources of great stress. The overall atmosphere of an IEP meeting is not something over which you have much control. Paul Steffens from greatschools.org offers the following advice to families:  Get to Know Each Other: Meeting with teachers and administrators in person before the year begins is a great way to get off to a good communicative start. This meeting does not need to be long, but one in which you will be able to share your child’s strengths as well as outline some of your concerns.  Work as a Team: The beauty of the special education process is that each team member has his/her own area of expertise. When all minds are working together to support a child with a disability, creativity can abound when attempting to create modifications and accommodations to support the child’s access to the curriculum.  Communicate: Decide what is the best way for all to be on the same page, whether via email, a communication notebook or snapshots taken throughout the day on a digital camera, the best teams work together when communication is consistent.  Flexibility is the Name of the Game: As teams plan for children with more complex needs, we all know that sometimes ideas we dream up don’t work as we planned. Maintaining flexibility being willing to tweak and change ideas is key in order to work for success.  Laugh: Although this may be hard at times, a sense of humor and giving one another the benefit of the doubt during bumpy times can go a long way. www.greatschools.org/specil‐education/support Resources for Families
Parents of children with disabilities were key partners when the Individuals with Disabilities Education Act (IDEA) was first enacted in 1975. Through parent advocacy groups, parents were instrumental in guaranteeing that their consent and input is necessary, according to law, when gathering information for assessments and developing Individual Education Plans (IEP). Before these parent groups put forth the effort to pass this law, their children with disabilities did not have a legal right to receive a free and appropriate public education. These parents forged the way for all children to attend public school. IDEA ensures that parents are seen as co‐members of the teams that make educational decisions on behalf of children with disabilities; however Valle and Aponte (2002) write, “We are far from realizing the spirit of collaboration envisioned by Congress more than two decades ago.” In order to access the current system, literature consistently identifies four areas in which parents need knowledge and skill to increase their ability to advocate on behalf of their child with a disability: 1) knowledge of their rights according to law; 2) IEP training; 3) leadership training and; 4) knowledge of conflict resolution strategies. If any of these four areas of expertise are not your strength, Part D of the IDEA sets aside grants for each state to institute a parent training and information center (PTI) [20 U.S.C. § 1471]. This PTI is where parents can access training and information to help navigate the special education system. In Iowa, our PTI is located in the ASK Resource Center in Johnston, Iowa (www.ASKresource.org). If you have specific questions about the special education system or would like to attend trainings to help increase your own advocacy skills, the ASK Resource Center is a great place to look! 5 RECOMMENDED READING
Tarheel Reader Books for older emergent readers Some fun picture books (mainly for middle school or lower grades): (or any age). www.tarheelreader.org Football, by Charlie Smith Do You Know This Food?, by Sharon Ting Book Fiesta, Monster Trucks Show, by Dustin by Pat Mora Raymond's Book of Music, by Kensington Secondary School I Live for Music, by Kensington Secondary School These wordless books are good for any age. You can use them to promote discussion or to make up your own story about the pictures: The Interrupting The Snow Man, Chicken, by Raymond Briggs by David Ezra Stein The True Story of the Three Little Pigs, by Jon Scieszka and Lane Smith One Scary Night, by Antoine Guilloppe The Three Pigs, by David Wesner A Letter to Amy, by Ezra Jack Keats The Lion and the Mouse, Wolves, (nonfiction) by Jerry Pinkney by Seymour Simon The Red Book, by Barbara Lehman 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