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