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SpectrumLife PORTLAND AND SW WASHINGTON’S ONLY MAGAZINE FOR THE AUTISM COMMUNITY TM
m a g a z i n e
ROJO THE LLAMA - A LLEGACY of LLOVE ART BY CONNOR AUTISTICALLY THRIVING CHRISTMAS, AUTISM, AND TEACHING KINDNESS BUILDING INDEPENDENCE THROUGH SELF-ADVOCACY NWCAVE HAS A DREAM… A WORLD WITHOUT VIOLENCE PARENTS EMPOWERED AND COMMUNITIES ENHANCED (PEACE)
WINTER 2019
This Holiday, give the gift of comfort.
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Our Pledge: $1 for each TwiddleNathan sold will be donated to the Autism Society of America.
WINTER 2019
contents
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Rojo the Llama Tribute - A LLegacy of LLove
FEATURED SECTIONS ADVOCACY
8 10
Autistically Thriving New book by Judy Endow based on autistic neurology. Parents Empowered and Communities Enhanced Promoting PEACE for the I/DD Community and beyond.
EDUCATION
30 32
LIFESPAN
16 18
Christmas, Autism, and Teaching Kindness Kind acts during the holidays and every day. We Are Thankful Our autism community shares gratitude and joy.
Recreation
24 26
Art by Connor Shining a light on the art of Connor Wortendyke. Ask Spectrum Life Podcasts, webcasts, and Geek Club Books.
Building Independence Through Self-Advocacy An essential lifelong endeavor. Modifications, Accommodations, Graduations, Oh My! The pros and cons of a modified diploma.
HEALTH + WELLNESS
35
Spectrum Life Resource Directory Spectrum Life Magazine online helps you find autism-friendly service providers.
36
All About Community Finding common ground through the love of fitness.
38 40
National Women’s Coalition Against Violence & Exploitation (NWCAVE) We have a dream… a world without violence. Getting Your Body in Motion for the Holidays Increase activity and decrease stress.
therapy
43 46
Rojo the Llama Tribute A LLegacy of LLove - (4/26/02 - 11/06/19) Upcoming Autism Empowerment Events Support Groups, Social Clubs and Special Events.
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FROM THE PUBLISHER
SpectrumLife TM
m a g a z i n e
WINTER 2019 | VOLUME 8, ISSUE 4 SPECTRUM LIFE MAGAZINE TM A program of Autism Empowerment TM Karen Krejcha, Autism Empowerment, Publisher Dave Born, Graphic Designer Editorial Advisory Board:
Welcome to our Winter 2019 edition of Spectrum Life Magazine! Wherever you may be reading this from, we are grateful for you and the time you are spending with us today. The holiday season brings a mixed stream of emotions for many people, myself included. However, just as each day contains darkness and night, it also brings brightness and light. My hope for you throughout your life journey is to find your light and let it shine. Our cover model for this issue is very near and dear to my heart, and beloved by children and adults worldwide. Rojo the Llama, a local therapy llama known for his exceptionally gentle temperament and love for carrot kisses passed away on November 6th, 2019 at the age of 17. To honor our favorite camelid, we invite you to our Rojo the Llama: A LLegacy of LLove tribute on page 43. This issue also shines a light on amazing people in our community. Connor Wortendyke is a talented young artist who, although mostly nonspeaking, communicates a world of color and joy through his vibrant paintings. They make great gift ideas! See Art by Connor on page 24. We also like to highlight organizations doing important work so that community members can connect. Come learn about Parents Empowered and Communities Enhanced (PEACE) on page 10 and National Women’s Coalition Against Violence & Exploitation (NWCAVE) on page 38. Also check out All About Community on page 36 which brings together Specialty Athletic Training, the Portland Winterhawks and residents from Stephen’s Place to bond through fitness! In our Education section starting on page 28, our contributing experts share about the pros and cons of modified diplomas as well as the essential skill of building independence through self-advocacy. For more learning and advocacy, read about the launch of Judy Endow’s new book, Autistically Thriving on page 8. One of my favorite pieces is a collaborative effort from youth, adults, parents, family and professional allies connected with the autism community. We Are Thankful joins our Stories from the Spectrum series with a twist: Humanity from a Human Perspective. See page 18. Thank you for supporting us in producing another great year of Spectrum Life Magazine! Wishing you joy, peace, wellness and a 2020 vision of clarity and fulfillment!
Karen Krejcha Executive Director & Co-Founder: Autism Empowerment™ Editor: Spectrum Life Magazine™
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Amy Donaldson, Ph.D., CCC-SLP Laurie Drapela, Ph.D John Krejcha Tara O’Gorman, MSW Heather Parrott Brian Tashima Mailing address: Autism Empowerment P. O. Box 871676 Vancouver, WA 98687 (360) 852-8369 www.AutismEmpowerment.org spectrumlife@autismempowerment.org Autism Empowerment is a 501(c)3 nonprofit devoted to promoting a culture of acceptance and empowerment for children, teens, adults and families within the Autism and Asperger community. Autism Empowerment makes no warranty, guarantee, endorsement or promotion of any service provider or therapy option listed in this publication or our websites: AutismEmpowerment.org and SpectrumLife.org. This is a free community magazine created as a courtesy to the public. Autism Empowerment cannot be held liable for any action or decision based upon information found in this publication or our websites. It is the responsibility of individuals to discuss any therapy or treatment option with their care team. Every effort is made to ensure accuracy and verify information, however readers using this information do so at their own risk. No part of this publication may be reproduced or transmitted without prior written consent from the publisher, Autism Empowerment. © 2019 All rights reserved.
ON OUR COVER Our feature cover story is a tribute to the life of Rojo the Llama, the beloved therapy llama who brought joy to children and adults worldwide. See our cover story on page 43. Photo courtesy of Lori Gregory, Mtn. Peaks Therapy Llamas & Alpacas
Season’s Greetings! Thank you for being a reader of Spectrum Life Magazine, a nonprofit publication of Autism Empowerment. We hope you have enjoyed our four seasonal 2019 editions. We have a favor to ask. We bring quality editorial content, resources and connection opportunities for youth, adults, and families impacted by autism. Throughout each month we positively partner with autistic advocates, parents, educators, agencies and professionals in many fields. We have not yet charged locally for distribution of our magazine because we want everyone in the autism community to receive quality enrichment and support. The need in our community is great. (And so are you!) But... Spectrum Life Magazine is expensive to publish. This issue, we printed 12,000 copies and distributed them for free to over 500 locations in OR and WA. As a nonprofit charity, we rely on the generosity of individual donors, businesses, and partners like you for support. We NEED your help TODAY! If you believe that our magazine brings value to the autism community, please support us by making a donation to Autism Empowerment this holiday season. ANY amount helps! Thank you!
www.autismempowerment.org/donate Or mail a gift payable to Autism Empowerment to:
Autism Empowerment, P.O. Box 871676, Vancouver, WA 98687 Tax ID #45-2455219. Autism Empowerment is a 501(c)3 nonprofit charity.
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advocacy EMPOWERING CHANGE WITHIN THE AUTISM COMMUNITY
IN THIS SECTION Autistically Thriving...........................................................................................8 Parents Empowered and Communities Enhanced............................. 10
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Free Resources... for Parents and Caregivers of Children with Autism from Seattle Children’s Autism Center
The world of autism spectrum disorders is constantly changing and we at Seattle Children’s Autism Center are eager to share with parents and caregivers the latest therapies, research, news and tips for families.
1. The Autism Blog
theautismblog.seattlechildrens.org We provide information that may be helpful for raising a child with autism. Posts are written by physicians, nurses, psychologists, and family resource staff who are knowledgeable about the diagnosis and the latest in treatments and therapies are primary contributors to the blog. Topics range from selecting a summer camp to sibling support to new research findings to our perspective on the latest news and information about autism.
2. Autism 101
Available in-person at Seattle Children’s or by teleconference Autism 101 is a 90-minute presentation providing information and support for parents and families of children recently diagnosed with an autism spectrum disorder (ASD). Topics include up-to-date, evidence-based information about ASD, behaviors associated with autism, autism prevalence, treatments available and resources for families.
3. Autism 200 Series
Available in-person at Seattle Children’s or by teleconference. Watch past lectures on our website. Autism 200 is a series of 90-minute classes for parents and caregivers of children with autism who wish to better understand autism spectrum disorder. Classes are taught by faculty from Seattle Children’s and the University of Washington and other community providers. Topics include transition to adulthood, early intervention and school support. Each class includes time for questions.
Learn more or register at seattlechildrens.org/autism or by calling 206-987-8080. For information related to setting up a teleconferencing site for the Autism 101 or 200 series in your community, contact James Mancini at james.mancini@seattlechildrens.org or 206-987-3481.
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ADVOCACY
Autistically Thriving
Living a Self-Determined Life By Karen Krejcha Autistic self-advocate, author, painter, poet, and international speaker, Judy Endow, LCSW has been a regular contributor to Spectrum Life Magazine since the beginning of 2017. The articles that we publish originally appeared as blogs on her website, Aspects of Autism Translated and cover a wide range of topics, all written from Judy’s autistic perspective. Although some of her writings are a few years old, the content is relevant, relatable and new for many readers.
Judy Endow As a woman in her sixties who is both a mother and grandmother, Judy Endow is now a role model to many. As a young girl, she did not understand that she was experiencing life differently than most of her peers. Listening to her speak and reading her writing, many are surprised to learn that she spent some of her teenage years living in an institution. Despite those circumstances, Judy emerged strong and has received many honors for her work, including the Autism Society of America’s Cathy Pratt Professional of the Year Award - the first autistic person to receive this prestigious national award. As a regular reader and huge fan of Judy’s work, I was thrilled when she sent me a personal email in March letting me know that she had a new book coming out, and it was one she’d been working on for several years. Exciting! I knew that I would be one of the first to pre-order and indeed, I received my copy of Autistically Thriving in early October 2019. The extended title is Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology. At 270 pages and the size of a softcover textbook, the book includes 15 chapters and is rich with information to help readers understand and support youth and adults throughout the lifespan with autistic neurology.
In fact, a great piece for the holiday season by Judy is featured on page 16 of this issue. Be sure to check out Christmas, Autism, and Teaching Kindness and let us know what you think! The people who write in or speak with us about Judy’s articles are an interesting mix of adults. Many are parents trying to better understand their children. Some are educators or therapists looking for new ways to connect with their students or clients. I’d also estimate that at least half of the people we hear from identify as adults on the autism spectrum, including older adults new to diagnosis as well as younger autistic adults interested in the perspective of someone who has gone before them.
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Key topics include: • What we know about the autistic sensory system • What we know about the autistic style of thinking • What we know about reading comprehension • What we know about autistic people and conversation • What we know about engagement after high school • Understanding and supporting autistic neurology • Creating pictures in layers • Autistic solutions related to taking in and processing information • Autistic solutions related to storing and retrieving information • Autistic solutions related to thinking visually • Autistic solutions related to literal and concrete thinking Judy’s conclusion section also includes a number of points to ponder about how we define ourselves, the importance of choice, what inclusion can look like and future considerations. With Judy Endow’s permission, we are sharing the first section of the book’s introduction with Spectrum Life Magazine readers. The following is Judy’s writing. Continued on next page
Autistically Thriving, continued from page 8 Book Introduction MOST ANYTHING ABOUT AUTISM and learning typically starts out with the deficits of autism responsible for the problem experienced by the autistic. Then, it is followed up with ideas on how to address the deficits so as to impact the problem. If I were to start this book that way I would next talk about the diagnostic criteria. Here is what the DSM-5 says: ASD Diagnostic Criteria Persistent deficits in social communication and social interaction across multiple contexts (current or history) 1. Deficits in social-emotional reciprocity… 2. Deficits in nonverbal communicative behaviors… 3. Deficits in developing, maintaining and understanding relationships… Restricted, repetitive patterns of behavior, interests or activities… motor movement, sensory, sameness, routine, fixated interests in objects or topics – Diagnostic and Statistical Manual of Mental Disorders, 5th ed., 2013 In case you don’t know how the DSM diagnosing works, I can fill you in. We have our everyday people on the face of the earth. They make up most of the population. Because this group makes up the majority, we have decided their behaviors are typical and we label them normal. Then, everyone else is measured according to how far away from normal they land. And, if they land far enough away from normal in enough areas they get a diagnostic label. By design, DSM labels are framed in deficit terms. And in terms of diagnostics, this deficit language is helpful. However, it isn’t very often helpful when we take this deficit-based language out of the diagnostic arena and use it to describe who and what autistic people are in this world. We are ever so much more than the sum total of our diagnostic deficits. So, let’s begin with autistic people – Who are they? How do they think? What are their strengths? Their skills? Their way of understanding the world? How do they understand other people? All of my life, until very recently, I have only known what I am not. It is because autism is largely measured by absence of neurotypicality. My hope for the future is that autistics coming up behind me will grow up with a more positive sense of self – learning who they are in this world rather than who they are not. In that spirit, I write from a perspective shift. A selfdetermined life is empowered through comprehension of the context in which we live. Let’s start with autistic people and comprehension – reading comprehension and life comprehension. How does it work? How do we empower autistics, based on their neurology, to comprehend what they read and to better understand the foreign land in which they find themselves living?
To find out more about those topics, you’ll need to read Autistically Thriving! Early Rave Reviews Many nationally known writers and autism community advocates have already given Judy Endow high accolades for her work. Here are two we wanted to share: Autistically Thriving is a groundbreaking book that shows people on the spectrum how to leverage the natural strengths of their neurology to navigate the world effectively and live up to their fullest potential. Wise, compassionate, engagingly written, and deeply knowing about the distinctive cognitive styles of autistic minds, Endow’s book makes the lessons of the author’s bold, creatively atypical life available to the next generation of neurodivergent innovators. - Steve Silberman, Author of Neurotribes: The Legacy of Autism and the Future of Neurodiversity The book is one of the best books on autism where information and art meet to include each other from the beginning until the end. The layout of chapters, subheadings and vivid explanations can captivate the attention of anyone who wants information about an autistic person’s sensory struggles, coping mechanisms of the mind and growing a philosophy out of odds. I would recommend this book to parents and providers who want to involve themselves in the life of an autistic person. – Tito Rajarshi Mukhopadhyay, Autistic advocate and Author of How Can I Talk if my Lips Don’t Move and Plankton Dreams – What I learned in Special Ed To read more of Judy’s work and to order Autistically Thriving for yourself or a loved one, please visit www.judyendow.com. References: 1. Diagnostic and Statistical Manual of Mental Disorders, 5th ed., (2013) 2. Endow, J. (2019). Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology. Lancaster, PA: Judy Endow. 3. Aspects of Autism Translated, www.judyendow.com Karen Krejcha is the co-founder of Autism Empowerment where she serves as Executive Director. She is Editor of Spectrum Life Magazine and a vibrant public speaker. Karen was diagnosed on the autism spectrum in her 40s, after the diagnosis of her two children. She has been married to John for over 27 years and is devoted to promoting a culture of acceptance and empowerment within the autism community and the world at large. www.spectrumlife.org
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ADVOCACY
Parents Empowered And Communities Enhanced
Promoting PEACE for the I/DD Community and beyond By John Krejcha Building independence and resilience are skills that most family members strive for while navigating the many twists and turns of life. Often they need a little help in their journey. Parents Empowered And Communities Enhanced (PEACE) is a nonprofit organization that provides advocacy and support for parents, families and individuals with a broad range of intellectual and developmental disabilities. Spectrum Life Magazine recently connected with Darla Helt, Executive Director to learn more about how PEACE is positively impacting lives within Southwest Washington and around the state. Please tell our readers a little about the background of PEACE. PEACE stands for Parents Empowered And Communities Enhanced. We are a 501(c)3 nonprofit organization based in Vancouver, WA that was founded in April 2016. We house a wide range of programs and services underneath our organizational umbrella. While our motto is “we serve anyone who contacts us,” our area of expertise is supporting families and individuals of all ages throughout Southwest Washington who have intellectual/developmental disabilities (I/DD). We provide navigation and support to anyone who contacts us, and our events and trainings are open to all community members. All these services through PEACE are free. We provide services through a variety of channels, including but not limited to: • Systems and service delivery navigation, connection, education and enlightenment • Planning and development - home, life, work and community • School-to-Work preparation, planning and development • Leadership development • Fostering a process of supporting parents, families and grassroots groups in improving inclusive and natural supports in their communities.
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How would you describe your mission, vision and core values? Our mission is enhancing community for individuals of all abilities. Our vision is for individuals to have the connection and support they need to live out the life of their dreams. Our organizational values include: Interdependency, Accompaniment, Respect, Grace, Equality, Resiliency, Beloved Community, Integrity, Joy and Gratitude. Tell us about your core values statement: PEACE believes that healthy interdependence on one another is required for individuals, and hence the community, to be healthy and whole. PEACE sees this occurring through accompaniment with one another on our individual journeys. While we may walk on similar journeys, we acknowledge that each person’s experience and pathway to this journey has been different. Continued on next page
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Parents Empowered and Communities Enhanced, continued from page 10 It is only through respect and grace that true understanding and equity can occur for everyone. Our goal is to assist others in building up their own resiliency. PEACE serves others through integrity and love; we rejoice with those who rejoice and weep with those who are weeping. We guide those who may not know the way and assist with challenges where we can, finding joy in the middle of it all, and remembering to show gratitude for each experience that is brought before us. This is how we hope to grow our Beloved Community, resulting in families and individuals experiencing more peace in their life. Please tell our readers about your background and your family’s autism journey. I have been working in the I/DD community for the past 26 years facilitating programs and supports for families on a county and state level. I am a mother of three amazing sons, two of which are on the autism spectrum. All of them are now grown (38, 30 and 27). I was first introduced to the world of disabilities as a child, having several cousins on the autism spectrum or who experience I/DD. When my second son was born, it was clear there were lots of medical issues which included congenital heart defects, being medically fragile, and developmentally delayed. There were years spent in the hospital, and only later after a long and confusing journey was he diagnosed with two rare genetic syndromes, Sotos syndrome and Kartagener syndrome, in addition to autism. With my youngest son, it was a very different experience. He was developmentally advanced in all areas except social communications. Around 8 months old he had a severe infection after which he lost his babbling, eye contact and interactions. By 10 months old, a family member suggested he may have autism. He started receiving therapies right away but it took another year before we were able to get into OHSU where he was diagnosed with autism. The year was 1994.
CCPC is currently involved in working to increase support through the behavioral health system to individuals that are on the autism spectrum. CCPC also has been working behind the scenes to increase the number of Centers of Excellence providers in our community and across the state so that families can have better access to services. CCPC helps families look ahead to identify the path that best fits them and provides assistance and guidance along that journey. Parent to Parent (P2P) of Clark, Klickitat and Skamania Counties – In each county we offer peer to peer support, coffee groups, information and referral services, and social gatherings. Community Training – We provide community training in all three counties. Training topics are based on request or identified need by families & professionals. Multicultural Supports – We provide assistance in navigating barriers to services for all families. Services are available for all events and trainings in any language upon request. For our Spanish-speaking community, we also provide training and support in a smaller group setting, often with guest speakers. Leadership Academy – This is typically held every 4 - 5 years and participation is by application process only. In other states it is known as Partners in Policymaking. Cohorts consisting of self-advocates and parent advocates are trained on all levels of services and supports on a state and federal level, for individuals who experience I/DD. Advocacy skills are developed, connections and networks are built, and community projects are accomplished. There have been 122 incredible graduates of the Leadership Academy in Clark County since 1999.
After my sons were born, I changed my life focus to finding answers. I first attended school for nursing to understand medical needs. I later received a Certificate in Leadership & I/DD from Washington Developmental Disabilities Council & University of Washington. As the needs of my family changed, I later received a degree in Human Development.
Special Celebrations – Special Celebrations is a volunteer parent-led support group dedicated to creating social opportunities year round for loved ones with disabilities or special health care needs. The goal is to build a community of lasting friendships, acceptance and inclusion. Although parent-led, the group does receive some organizational support through our Parent to Parent program. Special Celebrations provides opportunities for youth, adults and families to get together and have great community fun, including annual event favorites such as a Masquerade Ball in spring, a Harvest Festival in the fall, and Sensitive Santa in the winter.
There are many different groups that operate underneath the PEACE umbrella. What are your key programs and how do they differentiate from one another?
Note from Editor: To learn more about Special Celebrations, see our interview with founder Theresa Van Pelt in our Winter 2016 issue or online: bit.ly/specialcelebrations
We have a variety of programs and services and are open to hearing from our community about what else might be needed.
Building Independence – This group is focused on young adults building the skills they want, to live the life of their dreams. This a peer-to-peer model, where everyone is the teacher, and everyone is the student. The group helps decide what skills they want to work on and then with the help of facilitators, they find fun and creative ways to learn and practice. A few past topics have included cooking, money safety, family relationships, dating and hosting social gatherings.
Clark County Parent Coalition (CCPC) – We work on a state level making sure that parent voices and input are heard at all levels of decision making. CCPC is one of 14 Parent Coalitions around the state that make up the Washington State Parent Coalitions which each provide information, navigation, education, training and systems advocacy on the policy level.
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Parents Empowered and Communities Enhanced, continued from page 11 Housing Expansion options – We are working on a state and local level to try and expand affordable housing options for adults who experience disabilities. In May 2019, we hosted an Affordable Housing Conference in Southwest Washington which attracted speakers from throughout Washington and Oregon. The idea was to gather investors, builders, nonprofits, landlords, families, and government agencies together to discuss topics around affordability, housing options, technology, and workforce issues. If funding becomes available, we would like to see this event happen on a regular basis. Special Education Support – We understand that engagement with Special Education can be challenging. Our team is dedicated to helping families navigate through the educational system, including the Individualized Education Program (IEP) process. We work to support and educate families on ways to best advocate for their child, including collaboration with schools. We offer weekly IEP support by appointment. Please tell us more about your work around advocacy on both a local and statewide level? We have many opportunities for advocacy at a local, state and federal level. We place great emphasis on helping expand the knowledge of our elected officials regarding
the struggles that people with disabilities and their families face daily. We do this by increasing opportunities for families to meet face-to-face with elected officials. We also help them connect by phone or email in order to share their stories and experiences. When our federal delegation hosts town halls several times a year, we ensure families receive information about these events and help prepare them for asking their questions in a public platform. Every other year, we host the Clark County Candidates Forum on Disabilities in partnership with other local nonprofits and groups who make up the Clark County Disability Coalition. At this open community forum we invite candidates from Legislative Districts throughout our local region as well as Congressional District 3 to meet self-advocates, parent advocates and family members. It is their opportunity to share with attendees and potential voters how if elected, they would support services for individuals with I/DD. In non-election years we host Legislative Teas in a smaller, more intimate setting with families and their elected officials. When the Washington State Legislature is in session, we participate in Advocacy Days in Olympia. These usually happen weekly from January through early Spring. We offer transportation to those who wish to attend, show them around the capitol and help set appointments for families and self-advocates to meet with their legislators to address issues important to them. What are the future goals and plans for PEACE? PEACE would like to continue to build our involvement in finding solutions around the housing crisis for those within our community. We are looking at maybe a roommate matching system and helping to build options for adults that are wanting to increase their independence. As we want a fully inclusive community, we also would like to have a “Center for PEACE” which would be a place where everyone can just come and hang out. We envision the center having a space for other nonprofits and service providers that support our community. It may include a coffee shop or café. We visualize a place where everyone knows your name. People can come, socialize and then access the services they need. We want peace for individuals of all abilities, and for them to have the life of their dreams. In other words: PEACE in their life. What is the best way for someone to get in touch with you? The team here at PEACE serves three counties and is made up of seven coordinators and our administrative assistant. Here is our physical location: 9414 NE Fourth Plain Rd Vancouver, WA 98662 Call 360-823-2247 or email: info@peacenw.org You can learn more about PEACE and check our calendar of monthly events at our website: www.peacenw.org
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Parents Empowered and Communities Enhanced, continued from page 12 We also invite you to follow us on Facebook on our variety of program pages and groups: www.facebook.com/peacenw www.facebook.com/CCP2P www.facebook.com/Clark-County-ParentCoalition-107877882581478 www.facebook.com/ParenttoParentofKlickitatCounty www.facebook.com/groups/specialcelebrations What else is important for Spectrum Life Magazine readers to know? Most importantly, the founders of PEACE are committed to the planning and development of a fully inclusive community where each person is recognized for their gifts and contribution to that community and is honored as a fully participating community member regardless of heritage, gender, race, orientation, history or disability. And finally, we hold fast to the concept that to attain what we want for people and their families, we often need to first fall silent and listen. This naturally revises “Here is what we have for you in our menu of services” to “What is meaningful to you and what do you want and need?”
John Krejcha is co-founder of Autism Empowerment and serves as Program Director where he oversees Community Outreach. He also serves on the Editorial Advisory Board of Spectrum Life Magazine. John is married to Autism Empowerment co-founder, Karen Krejcha and is the father of two amazing children and their cat, Zula. While John is the only one in the family who is not on the autism spectrum, he identifies as neurodiverse.
Everyone deserves a full and meaningful life. PEACE can help you and your child have the life you both dream of.
Providing guidance, training & support around disabilities 9414 NE Fourth Plain Rd., Vancouver, WA 98662 360-823-2247, en Español x103 www.peacenw.org www.spectrumlife.org
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lifespan ALL AGES AND ABILITIES
IN THIS SECTION Christmas, Autism, and Teaching Kindness.......................................... 16 We Are Thankful............................................................................................... 18
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Fe Be a He ture re d !
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LIFESPAN
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Christmas, Autism, Teaching Kindness
Kind acts during the holidays and every day By Judy Endow During the holiday season, people are sometimes rushed and frazzled due to the extra activities and expectations of the season. Thus, it is a particularly good time to talk about kindness. Many individuals with autism are literal and concrete thinkers, which can make teaching an abstract concept such as kindness a little tricky. Here are some ways to work with an autistic neurology when teaching the concept of kindness:
Capture a Kindness a Day: Ben loved taking photos with his phone so his assignment was to snap photos of observed kindnesses. At the following appointment, we looked at the photos together while Ben told me the kindness depicted in each one.
Identify Acts of Kindness
Count up the Kindnesses: Mari put a handful of pennies into her left pocket each morning. Each time she saw an act of kindness she moved one penny from her left pocket to her right pocket. At the end of the day, she recorded the number of pennies in her right pocket.
Even though kindness is an abstract concept, we can start teaching kindness by noticing aloud whenever we see an act of kindness by another. This can include anything from holding a door to returning a stray cart in a store parking lot. We can comment on the behavior and identify it as kind. Model Acts of Kindness One way to model kind behavior is to treat others with respect. We can be polite to those waiting on us in stores and restaurants. We can say thank you whenever we appreciate the thoughtfulness of others. Be sure to identify these acts as being kind. We can even model what to do when we recognize our behavior is less than kind by calling a “do-over.” Whenever I find myself acting unkindly, I call a do-over. I then simply go back and do it over, pulling up the kinder behavior I wished I would have exhibited in the first place. Example: I one time said, “don’t be such a slowpoke” when my child was having a hard time choosing between breakfast cereals in the grocery store. I immediately called a do-over, apologizing and saying my words were unkind. I thought for a moment and then said he could carry both boxes of cereal, take his time choosing and after deciding, return the rejected box to the shelf. I like modeling do-overs because it is a quick way to repair a less than kind situation – something we all find ourselves in from time to time. This normalizes the fact that we are not always as kind as we would like to be, along with giving the remedy of what to do when we find ourselves in the aftermath of being unkind. Use a Visual To Report Observed Kind Acts Once an individual has an understanding of kind acts, I like to make a visual to support us in looking for and identifying kind acts we see others doing. I have used a variety of visual systems, depending on the interests and abilities of each individual. Here are some things I have implemented:
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Recall a Kindness: Jose and his mom talked about kindness at dinner each night. They each told the other about one kind act they had observed during the day. While mom cleared the table, Jose recorded the kind acts of the day on the Recalling Kindness log. Use a System To Record Kind Acts Engaged In Once kindness has been identified and able to be seen in others, it is time to encourage individuals to engage in their own kind acts. Remember, with autistic neurology, in addition to supporting a concrete, visual and literal style of thinking, the neurology often looks for the system. This means we can support this strength by developing a system to highlight kind behavior. Some systematic successes include:
The Christmas Kindness Can: A coffee can was covered in bright Christmas paper and labeled the Kindness Can. Slips of paper with prompts of kind acts were placed inside the can. Each morning one slip of paper was pulled out and an opportunity to engage in that kindness was watched for and implemented during the day. This idea can be used for one person, a family, a group or a classroom. One alternative is to create a story about a person engaged in the act of kindness described on the slip of paper drawn. Another alternative is to tell about a time you employed the kindness described on your slip of paper.
The Kindness Calendar: Using a monthly calendar, write a specific kind act on each square. The idea is to engage in the act of kindness written on the day’s calendar square. Continued on next page
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Christmas, Autism, & Teaching Kindness, continued from page 16
The Kindness Cup: An unpopped popcorn kernel was taken from the jar and put into a candy cane decorated coffee cup after each kind act. This was a classroom project with students and staff contributing. When the coffee mug was full of popcorn kernels, the class had a popcorn and candy cane treat. Reminder Remember, we are highlighting kindness. It is important that the kind act or deed we engage in, when directed toward another person, is perceived as kind by that person. If in doubt, you can ask the person first. This is because a helpful act of kindness is only helpful and kind if wanted or welcome by the other person. Conclusion The abstract concept of kindness can be taught to anyone. Start by identifying and modeling acts of kindness. When it comes to a person with autistic neurology, it is often helpful to use visuals and to employ a system for engaging in or in observing acts of kindness. This article also appears on Aspects of Autism Translated at www.judyendow.com.
Judy Endow, MSW, LCSW maintains a private practice in Madison, Wisconsin, providing consultation for families, school districts, and other agencies. Besides having autism herself, she is the parent of three grown sons, one of whom is on the autism spectrum. Her newest book, Autistically Thriving (2019) can be purchased through her website at www.judyendow.com.
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LIFESPAN
We Are Thankful
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STORIES from the SPECTRUM Humanity from A Human Perspective
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By Karen Krejcha At the time we began to create this piece, it was the middle of November. We were reflecting at Spectrum Life Magazine and Autism Empowerment about how blessed we felt and what we were thankful for. Just as each day has darkness and night, it also has brightness and light. You can’t spell community without UNITY and yet this concept of unity in the autism community often seems like a vision out of reach. For every two steps forward in advocating and calling for autism acceptance, including support and services to support real challenges, there are those on the other side of the fence telling us to step back. They imply our voices don’t belong or that we’re not really in alignment with serving the needs of ALL people on the autism spectrum. To that we say… We Are Thankful. We are thankful to open the door to conversation. We are thankful for respectful discourse. We embrace stories of people from all walks of life, from every part of our community.
Stories from the Spectrum Humanity from a Human Perspective Because we’re all human… and We Are THANKFUL for You! I’m thankful for a community that supports and accepts me for who I am! They’re always there when you need them the most!! ~ Andy H., Portland, OR I am grateful that my family says I’m perfect. ~ Ori E., 9, Vancouver, WA I am thankful for being alive, food, computers, Burger King, McDonald’s, and Denny’s! ~ Noah B., 15, Vancouver, WA Mommy, daddy, God, chicken nuggets. ~ Susie C., Lake Oswego, OR
Whether you identify as autistic, on the autism spectrum or a person with autism, we are thankful for you. We respect your choice to identify the way you choose.
I am grateful for the resilience and strength of my kids despite what life has thrown at them! ~ Dr. G., 44, Vancouver, WA
Whether you are a parent who is new to your child’s diagnosis or you’re the parent of an adult with disabilities so severe that you don’t think we could possibly get it, we are thankful for you.
I am grateful for beautiful sunsets along the coast and my furry companion. ~ Keisha J., 31, Seaside, OR
If you are a service provider in the community, an educator, a clinician or someone doing research to make life better for youth and adults on the autism spectrum, we are thankful.
I am grateful for God. I am thankful for chocolate. Cheese. And maybe wine too. ~ Brenda J., Clackamas, OR
We do not have to always agree with each other to be thankful. In fact, often tremendous growth comes when people from different cultural beliefs come together to break bread and greet each other from a place of grace. We greet you from a place of grace. We Are Thankful. Recently, we made a request through social media, email and in-person to members who identified as part of the autism community and asked what they were thankful for. We asked for 1 - 3 sentences and we said if they wanted to include a photo, that would be great. Some sent in slightly longer. Some sent in just a few words. All is good. The rest of this piece is devoted to sharing those quotes with you. We decided instead of having a “Stories from the Spectrum - Autism from An Autistic Perspective” piece, for this issue, we’d celebrate something different.
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I’m thankful for horses, unicorns, and Costco, oh and mommy and daddy so they can take me to Costco. ~ Chloe A., 10, Vancouver, WA I am thankful I got to meet Rojo the Llama. ~ Jamal T., 12, West Linn, OR I am grateful that God blessed me with parents who love me, a husband who is my best friend and soulmate, children who inspire me, a cat who keeps me grounded and the ability to use my giftings to shine a light on others. ~ Karen K., 51, Vancouver, WA Puns, pets, purple. - Josh, 14, Battle Ground, WA Continued on next page
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We Are Thankful, continued from page 18
I’m thankful for my family and the show Masked Singer. ~ Kimi, 15, Vancouver, WA
I’m thankful for family, friends, and fans of the Joel Suzuki series. ~ Brian T., 50, Vancouver, WA
Sixteen years ago, we were living in Denver, Colorado. Our son Zachary was two years old, and had begun to exhibit some unusual mannerisms at his preschool. His preschool teacher suggested that we have him evaluated for Sensory Processing Disorder. At the time, we as a family had little inkling of what sensory issues, Asperger’s Syndrome, or autism spectrum disorders were. However, that moment was the very beginning of our journey as a family into the wild, yet amazing world of autism. Looking back, I am most grateful for that teacher, who planted the seed that eventually led to Zachary’s diagnosis and early intervention through speech and occupational therapies. Today, he is a successful, self-reliant young man. Within the past year, he has earned his Eagle Scout award, thrived in his classes at Portland Community College, and completed a two-week study abroad program in Japan - without mom and dad. ~ Chris P., Newberg, OR
I am thankful that God has blessed me with an amazing family. Through the ups, downs and all of the twists and turns that this life has to offer, I can count on them. ~ John K., 51, Vancouver, WA
I am thankful to have so many opportunities to help others in the community. ~ Laura S., 41, Vancouver, WA I am thankful for the opportunity to work with the Skyview Robotics team. Working with high schoolers who are so committed to learning and working as a team is a blessing. I am thankful that I am able to be part of this team alongside my wife and children. ~ Gary B., 57, Vancouver, WA I am thankful for webcomics, my growing creativity and my family who has loved and supported me throughout my existence. ~ David S., 25, Vancouver, WA I am most thankful for my home, my mom, dad, and brother. ~ Kaden S., 11, Vancouver, WA I am grateful for the amazing group of therapists and administrators that I work with. Their commitment to their work, dedication to Advanced Pediatric Therapies and the families we serve, and their passion for continued learning about Sensory Processing Disorders and Autism is unparalleled. They inspire me to be the best therapist I can be and make work fun! ~ Sharron D., Occupational Therapist, Owner of Advanced Pediatric Therapies - Portland, OR and Vancouver, WA
I am thankful for the players, buddies, coaches, families, and community supporters of Salmon Creek TOPSoccer. I learn from and am blessed by each of them. I was especially blessed to be able to pie John K. in the face this past summer. ~ Julie B., 50ish, Vancouver, WA I am thankful that my disabled chicken I raised is still alive. ~ Logan S., 16, Vancouver, WA I am thankful for the Autism community, my 6 beautiful children, my husband, the Scip program and Clonidine! ~ Jennifer A., 42, Vancouver, WA I am thankful for my parents and my sister, for being able to have my driver’s license and get myself to places, that I get to have good friends, that I get to have good teachers. I feel grateful for a warm and safe house. ~ Zachary B., 16, Vancouver, WA I am thankful for flowers. All kinds of flowers. ~ Lindy T., Camas, WA I am thankful for a loving family, friends that care about me, and that I am able to get a good education! I feel very blessed that I have a roof over my head and parents that feed me and clothe me! ~ Lauren B., 19, Vancouver, WA I am thankful and so proud of my son and his family and the work they do to help others through Autism Empowerment and Spectrum Life Magazine! ~ Jan B., 78, Lake Alfred, FL We are thankful to God for giving us our awesome daughter Savanah. We are also thankful for our loving family and the supportive friendships we have built throughout the years. We have been blessed. ~ Travis W., Vancouver, WA
Pizza. Pepperoni Pizza. Not cheese. Pepperoni. ~ Tyler, 7, Salem, OR
I’m thankful for my beautiful family, I love them so much. ~ Diego A., Vancouver, WA
I am thankful for my family, my cat, my games and my teachers. ~ Ryan K., 13, Vancouver, WA
I am grateful that the Autism Empowerment organization exists and provides services and events such as the Teen and Tween Night where our son can just be himself with peers and simply enjoy being himself. ~ Robert K., Vancouver, WA
I am thankful for the abundance of community and support throughout this past year as we strive to get Thrive Therapy and Social Center up and running in Vancouver, WA. I am also so grateful to all of the amazing families I spend my days with! ~ Amanda B., Vancouver, WA
I am thankful for everything. ~ Dave, 61, Lummi Island, WA Continued on next page www.spectrumlife.org
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We Are Thankful, continued from page 19
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recreation
IN THIS SECTION Art by Connor.......................................................................................... 24 Ask Spectrum Life.................................................................................. 26
Photo courtesy of Cari Ansbro
INCLUSIVE WAYS TO HAVE FUN
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RECREATION
Art By Connor
An Expression of Joy
By John Krejcha Connor Wortendyke is a young budding artist from Vancouver, WA on the autism spectrum. The fact that he is mostly non-speaking does not stop him from communicating through his artwork. In fact, his vibrant colorful pieces speak volumes about just how magnificent and gifted he is. Spectrum Life Magazine recently connected with Cari Ansbro, Connor’s mom, to learn more about how Connor’s artwork has not only opened Connor up to a whole passion, but has also changed his life. Hi Cari! We’re excited to get to know more about Connor and his artwork. Please share a little about your family’s autism journey.
Connor is the younger of two brothers on the autism spectrum. The two are as devoted to each other as they are different. Sebastian was a late talker, but quickly made up for lost time. He’s creative, social, and interested in almost everything: history, travel, cinema, music, etc. Connor has always enjoyed sensory/tactile things: bright colors, clay, play dough, shaving cream, glitter, etc. Working with his hands allows him to be creative and express himself in a less-rigid way. Still he is mostly non-verbal. He experiences the world in his own unique way and is challenged to find ways of communicating and interacting with those around him. Our family’s autism journey began in 2002 with our older son Sebastian’s diagnosis, and Connor’s a couple of years later. The diagnosis felt like a wrecking ball. For a while, we were just in shock and feeling overwhelmed. It was a really difficult time.
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We began the work of finding the help and services our family needed and built a support system. Our kids have faced countless challenges and roadblocks. It has been a constant learning experience and there have been many times we didn’t think we were strong enough. Over time, as autism parents, it became clear that our challenge was to help them connect in a meaningful way with the world around them. So, ignoring the dire predictions of the professionals regarding the future facing our children, we focused instead on helping them build upon their strengths. When did you first realize that Connor had a love and talent for art and painting?
Connor has always been creative and curious, infinitely interested in how one thing affects another. He’s a doer and loves working with his hands, starting with making his own paper toys as a small child. He has grown up working with me on many creative projects: gardening, cooking, making herbal bath and body products, soaps, lotions, and various other handicrafts. He would get excited about every aspect of a project. When we first heard of art therapy being used to help people with autism, we started looking for a way to incorporate it into a home based program. We didn’t have access to an art therapist, so we simply started offering him as many creative opportunities as possible. It has been a lot of trial and error. We tried many different media. Then on a whim, I got Connor a painting kit for Christmas. And on a dreary, snowy day, we did our first painting together. Everything just clicked. It became immediately clear that this was Connor’s medium. We Continued on next page
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Art By Connor, continued from page 24 collected some hand-picked supplies and colors Connor chose. I helped him get started on his next painting and he was entirely in charge from that point on. Within a month, friends and family were asking for paintings. After years of looking for ways to channel Connor’s expressiveness, suddenly so many elements began to fall together in a way that we just didn’t expect. When he wasn’t painting, he wanted to watch painting videos on YouTube. It quickly became obvious that this was the thing that got him excited and that he’s really good at this. How are the colors chosen? How much input does Connor have in the colors? Connor eagerly engages in every part of the process, from buying supplies and selecting colors to deciding what techniques he feels like experimenting with. I offer guidance if he wants it and do lots of cleanup, of course. But every single painting is an expression of who Connor is. Interest in his work is exploding and he has quickly earned a growing fan base. I honestly have a difficult time letting his work go, although nearly each one has had an eager buyer. And if you could see the walls in my house, you’d understand. It makes me so happy to see him genuinely enjoy himself and feel proud of his work. Are there any techniques that Connor likes to use? Connor’s chosen art form is called acrylic paint pouring. It’s a process of mixing your desired colors of paint with a pouring medium and using your choice of techniques to create a composition. Connor is always interested in learning or developing new techniques and frequently combines several into his paintings. He visualizes what he wants to create and he plans it out. Watching him create is fascinating and a joy. He’s in charge of every step from selecting the size canvas and prepping it, to choosing his palette, then measuring the ingredients for the pouring medium and mixing the paints. He decides what technique he wants to use, and he decides when the painting is finished.
Where do you display Connor’s artwork? Connor’s art is for sale and is currently mostly displayed on his Facebook and Instagram pages, which are updated daily. He will be exhibiting some of his work in the gallery at Float On in Portland from January 6th through February 2nd of 2020. Is Connor’s artwork for sale? How much does it sell for? Yes, Connor’s art is for sale. The sales of Connor’s paintings are always evolving. When we first started selling them, it was exclusively to family and friends. As more and more people have become aware of his work, we’ve worked to adjust the pricing accordingly. He also does paintings on commission, in which case clients can request certain colors and sizes. As of November 2019, here is the current pricing: 12” by 16” paintings are $165 • 16” by 20” paintings are $275 All of Connor’s artwork is hand signed and dated. New pieces being sold will go out with a short bio as well. Art quality prints of any of his past paintings are available through his Etsy store. All proceeds from the sale of his works go toward supporting Connor’s art and therapeutic needs. What is the best way for someone to get in touch with you? You can find Connor and contact us through a variety of social media outlets: Facebook: www.facebook.com/ArtByConnor Instagram: www.instagram.com/artbyconnor1 YouTube: www.youtube.com/watch?v=GpJ-ptLw508 Etsy: www.etsy.com/shop/ArtByConnorStore What else is important for Spectrum Life Magazine readers to know? Connor’s sense of pride in accomplishment is obvious. As parents, we want our children to find their place in the world. It’s a source of particular anxiety for autism parents. Watching Connor grow in skill and confidence has been gratifying and gives us fresh hope for a fulfilling future.
One of the techniques Connor is currently employing is balloon dipping. It’s a very tactile technique. After the paint has been applied, he’ll go back with a balloon and dip it into the paint in areas he feels it should go. It creates an effect that sometimes looks like starbursts, and sometimes like flowers. They make him happy. He often uses this technique as a final step in a composition combining multiple other techniques, which gives his paintings a unique depth and texture. How long does it take to create one of the paintings? Creating a painting often takes hours. Preparing the paints and getting the right viscosity for just the right flow across the canvas requires time and concentration. Once Connor has completed a painting, it can take up to a week to dry. And if it needs varnish or another type of topcoat, that can add another couple of weeks. So, sometimes it is weeks between the beginning of a painting and it being ready to go to its destination.
John “Avant-garde” Krejcha is co-founder of Autism Empowerment and serves as Program Director where he oversees Community Outreach. He also serves on the Editorial Advisory Board of Spectrum Life Magazine. John is married to Autism Empowerment co-founder, Karen Krejcha and is the father of two amazing children and their cat, Zula. While John is the only one in the family who is not on the autism spectrum, he identifies as neurodiverse. www.spectrumlife.org
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RECREATION
Ask Spectrum Life Autism Resources for our Community
Each issue, Spectrum Life Editor and content curator, Karen Krejcha answers frequently asked questions about autism-related resources across the lifespan for our community. Dear Spectrum Life: Learning about autism and neurology has become my fascination ever since my children were diagnosed a few years ago. I wanted you to know that your magazine helped inspire my husband to seek his own autism diagnosis. We have learned so much about ourselves and each other. Thanks! What I like about your magazine is it isn’t the same thing every time. You share voices and stories of autistic people, parents and also community experts. However since you only come out quarterly, I find myself craving more content. Didn’t you use to have a podcast too? Is that coming back? Also, do you know of family-friendly videos or podcasts that might be suitable for explaining autism to kids? - Kelly from Beaverton
Dear Kelly, First, thank you so much for your kind words! With such a diverse community to serve, it is often challenging to create and curate content in such a way that we connect with people individually and meaningfully but have far-reaching impact as well. I am glad to hear that your husband sought his own autism diagnosis! As a parent of two children on the spectrum who didn’t receive my own diagnosis until after they were diagnosed, having that understanding about my neurological wiring has transcended the way I live my life. I am a more empathetic parent, a more patient wife, a more thoughtful daughter and a more authentic leader in the way I serve. I hope that you and your family continue to find strength in your own journey as well. It is truly a lifelong learning experience!
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You are correct in remembering that we did have a podcast. Actually, let me clarify. Autism Empowerment hosted two different podcast channels from 2012 - 2014. One was called Autism Empowerment Radio and one was called Autism and Scouting Radio. It was tremendously rewarding on an intrinsic level and a lot of fun too but I’ll be quite candid. We knew very little about “podcasting” then and we were doing it with a very small budget. My equipment to call in from was a telephone (landline - gasp!) and we used a platform called BlogTalkRadio in order to connect with guests from around the United States and Canada. I wasn’t too privy on editing and audio sound quality at the time, although I have educated myself since then on ways to improve since I am also interested in public speaking and voiceover acting. What we were concerned with and did a good job with was sharing authentic content and shining a light on the awesome things that people and organizations within our community were doing to support youth, adults and families impacted by autism. Probably the scariest thing in retrospect was that all of our shows except two were broadcast live. (What could go wrong?) Somehow, it always came together and when I logged in to my old Autism Empowerment Radio account account in early November 2019, it showed we had over 105,000 listens over approximately 125 shows. If you’re curious about the two shows that weren’t broadcast live, it was my two-part series interviewing local autistic advocate Karla Fisher about Token Theory, Autistic Burnout and her website at the time called Karla’s ASD page. I traveled on location to Karla at Intel and although my feelings of social anxiety were initially off the charts, it Continued on next page
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Ask Spectrum Life, continued from page 26 was one of my favorite interviews ever because Karla is so knowledgeable and she shared a wealth of information. So… with that being said, one of the most common requests I receive is about when we’re bringing back the podcast? Truthfully, we’ve wanted to do so for many years but didn’t have enough resources.
Fun fact: One of those talents is Jonathan (Murphy) Cormur who appeared on Autism Empowerment Radio in February 2013 to talk about his career as a voiceover actor! bit.ly/bluebeeteevee
I know the work we’re doing through Spectrum Life Magazine and Autism Empowerment is valuable, valid, needed and has great demand. I also truly believe that as more donors, foundations, and investors become familiar with our mission, vision, and values, we will gain the resources needed to transcend our content programming to the next level. So… to answer your question and the one we so often receive, we are taking a leap of faith again and announcing the return of our Autism Empowerment/ Spectrum Life podcast in the beginning of 2020. We haven’t finalized the name, we haven’t finalized the structure and we’re still really hoping some end-of-theyear angel donations come in to help support operations. But… we are going for it and look forward to sharing more in the months ahead! Be sure to check out www.autismempowerment.org and www.spectrumlife.org for details! Regarding your question about audio or video podcasts that explain autism to kids, we invite you to check out the work of a nonprofit organization called Geek Club Books. Their whole mission is about bringing autistic individuals creative and leadership opportunities that are meaningful, empowering and support their advocacy.
Bluebee Teevee Information Station - A program of Geek Club Books, Bluebee Teevee hosts a series of online informational kid-friendly videos that talk about autism in a friendly, age-appropriate yet clinically correct manner using pop culture and humor to keep kids engaged. These autism information videos are an easy and approachable way to talk to children about autism and help them see past differences, learn acceptance and understanding, and discover that we’re all pretty much the same at heart. What we love is that the series is written, filmed, performed and voiced by autistic talent!
We also encourage you and other readers to check out the wide range of content on the Geek Club Books website. From apps to blogs to comic books to videos to Zoom Magazine, their nonprofit organization produces pop culture-based autism awareness and acceptance education that is innovative, engaging, positive and opens hearts and minds to a new way of thinking about autism. www.geekclubbooks.com
May your 2020 be filled with beautiful vision!
Karen Krejcha is the co-founder of Autism Empowerment where she serves as Executive Director. She is Editor of Spectrum Life Magazine and a vibrant public speaker. Karen was diagnosed on the autism spectrum in her 40s, after the diagnosis of her two children. She has been married to John for over 27 years and is devoted to promoting a culture of acceptance and empowerment within the autism community and the world at large.
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education KNOWLEDGE TO EMPOWER FAMILIES AND INDIVIDUALS
IN THIS SECTION Building Independence Through Self-Advocacy........................ 30 Modifications, Accommodations, Graduations, Oh My! ......... 32
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Welcome to Spectrum Life Magazine’s Winter 2019 Reader Survey and Contest We value your time and feedback. Your answers help us learn more about you and how we can better serve you, your family (when applicable) and the autism community at large. Answer our survey by January 30th, 2020 and you will be entered to win a surprise package worth over $100.00. If you win, we will contact you via email and mail your prize package to you.
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On behalf of Autism Empowerment and Spectrum Life Magazine, thank you again for your support! 29
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EDUCATION
Building Independence Through Self-Advocacy An Essential Lifelong Endeavor
By Aaron Blackwelder
Learning self-advocacy is essential to becoming an independent adult. However, self-advocacy is a skill that is developed and not some innate behavior. And because of this, it is something that needs to be taught. As parents and caretakers of children with disabilities, teaching self-advocacy is crucial to our children’s well being. Recently, I have had several conversations that led to me writing this article. Through these conversations, I realized that self-advocacy is something that children need to learn, and it is our responsibility as adults to teach this. A teacher colleague commented to me about a certain student who was frustrating him because, though the child would email questions to the teacher, it was apparent that this student was not reading the replies. “What’s the point in replying? I feel like I am wasting my breath with this student.” Children not only need to learn how to write emails but also how to follow up. Another conversation involved a paraeducator who works with several of our at-risk students. She said that her students are afraid to talk to their teachers and that they don’t know what to say. She tells them, “Your teachers care about you and want to hear from you. Just approach them and I’m sure they will listen to you.” Many children lack the confidence to speak to an adult. Most of the time it is because they don’t know what to say. Lastly, my wife was telling me about a young man in the children’s theatre group where she volunteers. The boy had questions about his hair. She was impressed with his ability to write an email and ask questions about what he should or should not do when getting a haircut. When she replied how receptive he was to her instructions, she said, “In all the years I’ve been involved, I’ve never had a kid approach me. Usually, it is the parents.” A child who advocates for him or herself well is impressive and taken seriously by adults. As parents and caretakers, it is often easier to advocate for our children as we are more familiar and confident in our ability to work with others. However, we do our children a disservice when we do this for them. Though we need to consider our children’s needs and developmental abilities, I do believe we can help our children advocate for themselves.
Hand Over Hand As parents, I am sure we have all used the hand over hand technique when teaching our children a new skill. Maybe when they were painting for the first time, writing their letters, or teaching them how to pick up their toys. We took our children’s hands in our hands and showed them how. I remember teaching my boys how to brush their teeth. I placed the toothbrush in their right hand, the toothpaste in their left, and then I put my hands around theirs and walked them through the process. This was not a one and done endeavor. My wife and I had to do this several times before our children got the hang of it. This helped our children transition from us brushing their teeth to them becoming more independent and able to care for themselves. Now, as teenagers, we know our children are capable of brushing their teeth and have full confidence that they will continue to do so throughout their adult lives. Though we may not actually put our hands over their hands next time they have to have a conversation with their teachers, we can use this same strategy to help our children advocate for themselves. An example of this would be to sit down with our children and have them write an email to their teachers. Tell them what to write and how to put the email together. If they are going to be absent from school, have your child write an email to their teacher explaining that they will be out and that they would like to request any work they may miss due to this absence. Make sure you have your child copy you on the email so that you get a record of the conversation and can prompt your child to check their email when the teacher replies. Scripting and Role Playing Not all problems can or should be handled by email. Many need to be handled face to face. If your child is having an issue in school, for example, she needs to turn in a missing assignment, sit down with her and tell her what to say to the teacher. Be sure to teach them that tone and the words they choose need to show respect. For example: “Mr. Reynolds. I forgot to turn in last week’s assignment, I have completed it and would like to turn Continued on next page
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Building Independence Through Self-Advocacy, continued from page 30 it in. I know you are busy, but when you have time, I would appreciate you looking at this.”
• Remind your child that asking for help is a good thing.
Have your child say this to you. If they need help with inflection, help them. Explain why the words you chose are important. In my example, I did not provide any excuses, just ownership of the mistake. I acknowledged the role and workload of the teacher. I also did not ask if the work could be turned in. I made it an assumption that the work should be turned in. Word choice is important and we should explain to our children why we chose these words for them to use.
• Encourage your child to use classroom accommodations.
Teaching our children to self-advocate helps them become more confident and independent people. Some of the major takeaways our children will gain from learning self-advocacy are: • The ability to find solutions to challenges adults may not be aware of •A sense of ownership over their learning • I ndependence and self-empowerment •C onfidence in themselves The more we challenge our children to care for themselves, the more independent they will be as they grow into adulthood. Suggestions for Parents and Caretakers In an article by Andrew Lee titled, “The Importance of Self-Advocacy for Kids Who Learn and Think Differently,” he suggests the following: • Talk with your child about strengths and weaknesses. • Have ongoing conversations about learning and thinking differences.
• Find a role model for your child, like a mentor who learns or thinks differently. • When a problem comes up, give your child a chance to solve it before stepping in. • Let your child have a say in decisions about school. • If your child has an IEP, encourage your child to attend IEP meetings. • Consider adding self-advocacy goals to your child’s IEP. • Teach your child about legal rights and how to talk about them in a positive, constructive way. Remember, just like teaching our children to brush their teeth, teaching self-advocacy is not a one and done endeavor. It needs to be taught over and over until our children feel confident to do it on their own. As an adult, I am still learning how to advocate for myself and others. To help me, I have surrounded myself with people I trust to give me the advice I need. Not only do we need to teach our children how to self-advocate, but impress upon them the idea that this is a lifelong endeavor. Let them know that you hope they will trust you to give them advice as they continue to develop their independence. If you teach, challenge, and trust them to self-advocate, they too will trust you when they need advice. Reference: Lee, A. M. (2019, October 16). “The Importance of Self-Advocacy for Kids Who Learn and Think Differently.” bit.ly/youthselfadvocacy
Aaron Blackwelder s a high school English teacher at Woodland High School in Woodland, WA. He was nominated for Washington State Teacher of the Year 2019. He is married and the father of two boys on the autism spectrum who have shaped him as an educator. He is passionate about creating learning environments for all students. In his free time, he writes his blog, “Thinking 101” where he shares his ideas about education. Visit: mrblackwelder.wordpress.com.
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Photo courtesy of Bell Studios
Benefits of Self-Advocacy
• Praise your child’s efforts at speaking up.
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EDUCATION
Modifications, Accommodations, Graduations, Oh My! The Pros and Cons of a Modified Diploma By Diane Wiscarson, Kelsey Coulter and Taylar Vajda High school graduation is an important and impressive milestone for students. However, for parents of students with disabilities, it can also be stressful. Parents may feel unfamiliar with the options available to their children. What is a modified diploma? Why might a student receive a modified diploma instead of a regular high school diploma? What are the pros and cons of this option, and who gets to decide? Fortunately, parents should be involved in this decision, and modified diplomas can be a good option for many students.
Additionally, any student who receives a modified diploma must still be provided with a free appropriate public education (FAPE). For students with disabilities who have an IEP, this requirement extends through the end of the school year during which the student turns 21 years of age. Therefore, if a student has an IEP and graduates with a modified diploma, they are still entitled to transition services for as much as three years after receiving the modified diploma. Who decides if a student is eligible for a modified diploma and when is that decision made?
What is a modified diploma? A modified diploma is awarded to students who have a “documented history” of being unable to meet grade level achievements “due to learning or instructional barriers.” A “documented history” means evidence in the student’s file that demonstrates inability to meet grade level achievements even with modifications or accommodations. A modified course is a class that has been changed or altered for the student after other strategies (like an accommodation) have failed. An accommodation changes how a student learns or demonstrates knowledge of the material. For example, a student who has a very difficult time writing an essay might give an oral presentation instead, still demonstrating mastery of the content. A modification, on the other hand, changes what a student is taught or expected to learn. For instance, if a high school student cannot do high school level math, that student would be given math work at their individual level, so they might be learning and working on addition or subtraction instead. An “instructional barrier” is any physical, cognitive, or emotional barrier that impairs the student’s ability to meet grade level achievement. This could be many different things! It could be a learning disability, a psychological disorder, or more. Basically, a modified diploma is available to students who have struggled to meet academic standards due to some type of learning obstacle. Who can earn a modified diploma? Students can earn modified diplomas for many different reasons. Modified diplomas are not only available for students with special needs! Some other examples include students with English as a Second Language (ESL) or students with a 504 plan. A modified diploma is an option even if a student does not have an Individualized Education Program (IEP).
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The student’s “school team” decides if a student should receive a modified diploma. The school team should include the student and it must include the parent; other members of the school team are determined by the district. If a student has an IEP, then that student’s school team can be the same as the student’s IEP team. IEP teams should remember that choosing a modified diploma needs to follow the requirements of any other decision considered by the IEP team. Students can be identified as working toward a modified diploma as early as by the end of sixth grade. A school team cannot decide on a modified diploma for a student before sixth grade. Additionally, a modified diploma decision technically should not be decided any later than two years before the student leaves high school, although it can be made later as circumstances dictate. The point is that a decision must be made, yet can be reconsidered and changed by the IEP team at a later date, if necessary. (Although the amount of work required by the student to pursue a standard diploma after earning modified credits can be daunting and does not happen often.) It’s also important to bear in mind that the legal requirements of diplomas vary from state to state. Oregon, for example, has different types of diplomas while Washington does not. To earn a standard diploma in Oregon, a student must meet specific core requirements. Those requirements are modified for the student who is earning a modified diploma. Whereas in Washington, there are not different types of diplomas, but the IEP team has the ability to modify the work required for the student to earn the diploma. Pros of a Modified Diploma Not all courses need to be modified for a student to receive a modified diploma. The purpose of modification is to encourage the student to work toward their goals while helping them with accommodations or modifications they
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Modifications, Accommodations, Graduations, Oh My! continued from page 32
might need. The student doesn’t need to reach a specific level of proficiency. Each student is expected to develop an education plan and earn credit at that particular student’s level of ability. Districts are still required to provide the student with access to literacy instruction, access to needed courses, modifications, supports, and academic content. Additionally, a student who earns a modified diploma can still participate in the high school graduation ceremony.
Additionally, not all branches of the military accept a modified diploma. Acceptance depends on the current needs of each branch, and that criteria can change quickly. All branches do require a minimum score on a placement test called the Armed Services Vocational Aptitude Battery (ASVAB), though.
In the employment context, a student who graduates with a modified diploma can answer an employment question related to whether the student has earned a diploma with a “yes.”
Modified diplomas have some drawbacks, namely, not all four-year universities or programs will accept one, but they can still be a great option for many students. A modified diploma can be beneficial for a student who may not be able to meet all the graduation requirements necessary for a traditional high school diploma. While this is typically a disability, it does not have to be. Other students, such as ESL students, may also be eligible for a modified diploma. A modified diploma is a team decision, and parents must be on that team. The decision is not permanent, however, and can be changed. High school graduation should be an exciting time in a student’s life. Regardless of the diploma earned, it is an achievement for every student to celebrate.
Cons of a Modified Diploma
Photos courtesy of Wendy Mayo
Probably the biggest downside is that most four-year universities do not accept a modified diploma. Community colleges do accept a modified diploma, although all new freshmen are required to take an initial placement exam. Community colleges can also offer remedial courses (that don’t go toward college credit) for students who have received modified diplomas.
Conclusion
Diane Wiscarson, Kelsey Coulter and Taylar Vajda are attorneys with Wiscarson Law, the only firm in Oregon with a primary emphasis on special education law for families. Since its founding in 2001, Wiscarson Law has shepherded thousands of Oregon and Washington families through the region’s public schools and education service districts on behalf of their special needs children. Find more information at wiscarsonlaw.com.
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health & wellness DEVELOPING A SENSE OF WELL-BEING AND WHOLENESS
IN THIS SECTION Spectrum Life Resource Directory ...............................................................................35 All About Community......................................................................................................36 National Women’s Coalition Against Violence & Exploitation (NWCAVE) .......38 Getting Your Body in Motion for the Holidays ....................................................40
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SPECTRUM LIFE
resource directory
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Spectrum Life Magazine serves youth, adults, and families in the autism community. We seek to partner with nonprofit organizations, businesses, support groups, educators and professionals from a variety of fields who desire to support our community in a meaningful way. If you are an autism-friendly provider who desires to connect with new clients, we can help you make those connections through directory listings, advertising and sponsorship opportunities. Please contact John Krejcha, Program Director at spectrumlife@autismempowerment.org or call (360) 852-8369. Spectrum Life Magazine and Autism Empowerment do not endorse, promote or guarantee the services or outcome of any one provider or type of therapy.
We currently list over 1,200 autism-friendly service providers from Oregon, Washington and throughout the United States. Some of the directory categories where you are able to search for providers in your region include: Adult Services Advocacy Assessment and Diagnosis Autism-Friendly Businesses Camps Caregiving Chiropractic Dentists Educational Support Employment Assistance Financial Planning Government Agencies Housing Legal Medical Professionals Psychiatrists/Psychologists Recreation Safety Schools Special Needs Trusts Sports and Fitness Support Groups Therapy and Interventions Transportation Travel The SpectrumLife.org website launched in March 2018 and is a continual work in progress. In order for our directory to become stronger and better known, we invite community members to share this valuable resource with their colleagues, friends and family members. Let’s work together to build our community stronger! Thank you for your support! To learn more about our Spectrum Life Resource Directory, please visit and bookmark www.SpectrumLife.org. If you have a resource you’d like to see added, please contact us at spectrumlife@autismempowerment.org or through our website. www.spectrumlife.org
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HEALTH + WELLNESS
All About Community Finding Common Ground through Fitness By Ryan Lockard, CSCS, CSPS
Back in July, a player (Jake Gricius) from the Portland Winterhawks came across one of our social media channels and immediately wanted to get the team involved. For those not familiar with the Portland Winterhawks, they are a junior ice hockey team based in Portland, Oregon, playing in the Western Hockey League. They are one of the most successful teams in terms of producing National Hockey League (NHL) alumni. Most of their home games are at the Moda Center. After some phone calls and emails, we were able to schedule a time for some of the team to come to our Vancouver location, Stephen’s Place, and watch our clients in action. When given the opportunity and correct environment, exercise has a way of magically breaking down stereotypes and barriers. It happened during this visit and it was amazing to watch the evolution of the relationships being formed. When the guys first arrived, they received a tour of the amazing facility at Stephen’s Place. They interacted with the residents and signed autographs. This experience alone would have been a great experience for the young hockey players to increase their awareness of disability and acceptance of others. However, the next part of their visit left a lasting impression that they will remember for the rest of their lives. Although very kind, the players were a little reserved during their initial interactions. That all changed the moment we took them to the weight room.
Here is feedback we received from the players after the event: “I think just seeing how happy they are puts a smile on all our faces and it’s amazing we are able to do the same for them.” - Lane Gilliss “My experience with Specialty Athletic Training was seriously outstanding!! I was so impressed with how they welcome their guests with open arms and how positive of an environment it was! A lot of really cool moments with the guests that I will remember for a long time! It truly is a great place and everyone there is amazing!” - Mason Mannek “I really enjoyed my experience with Specialty Athletic Training. The energy and laughter throughout the building was infectious and made me and the team leave with a smile. Such a nice break from hockey, and being able to hang out and interact with the members was so much fun. I hope they enjoyed us stopping by. I know we are looking forward to our next visit with them.” - Matthew Quigley “I think it’s great what they do. To give the people that they are training something to look forward to and have fun with while still being active is amazing. You can tell the bond that’s created between them is something special and that’s heartwarming to see.” - Jake Gricius Athletics and fitness continue to be the common ground that I’m able to use to destigmatize disability and create opportunity. After their visit, our clients and their families had the opportunity to shower the players with their own praise as they attended their match in the Moda Center. They were cheering on not only our favorite hockey team but our new favorite hockey players as well!
Ryan Lockard is the founder and head trainer of Specialty Athletic Training,
As an athlete, you pour a lot of your soul into the weight room. It becomes your safe haven for self-improvement and reinforces lasting relationships with your teammates as they work out beside you. You can walk into a gym and immediately feel at ease because it is a familiar environment. This was apparent immediately when the Winterhawks stepped foot into the fitness center.
a personal training company located in
We walked into the fitness center to show the team some of our clients in action and the rest was history. They immediately relaxed and began joining the adult group that they had come to watch. It was like someone had flipped a switch. They began to support our clients and exercise along with them, as well as giving them assistance and showering them with positive support. They knew exactly what to do when they walked into that room and it was amazing to witness.
Specialist (ISSA). He can be reached at
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Portland, OR and Vancouver, WA, that specializes in fitness programs for children and adults with special needs. He is a Certified Strength and Conditioning Specialist (NCSA) and Certified Fitness Nutrition Ryan@SpecialtyAthleticTraining.com or www.SpecialtyAthleticTraining.com.
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Photo courtesy of Lavinia Nitu - Ma.Ni. Photo
When I first started Specialty Athletic Training, I envisioned creating an inclusive and supporting community that provided access to fitness to individuals with special needs. It would be a place where differences didn’t matter; rather, they were celebrated, and exercise was the means of finding the common ground to support each other. We have created that community at each one of the locations that we train at, but we have started to witness its effect on the greater Portland community as well.
All About Community, continued from page 36
Photos courtesy of Mary Rebekah Moore
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HEALTH + WELLNESS
NWCAVE has a DREAM... A World Without Violence! By Karen Krejcha In 2018, the CDC’s Autism and Developmental Disabilities Monitoring Network released a prevalence report estimating 1 in 59 children to be diagnosed with an autism spectrum disorder. When you add in adults, estimated prevalence is somewhere between 1 - 2 percent. Here is a more sobering statistic. According to the Disability Justice Center, people with disabilities are sexually assaulted at nearly three times the rate of people without disabilities. According to WA Says No More, 1 in 3 women will experience domestic violence, sexual assault or stalking from an intimate partner, and 1 in 6 men will be sexually abused in their lifetime. What can we do to protect our loved ones, our sisters, our brothers and our friends? We can get informed. We can educate others. We can advocate. We can also donate to and partner with organizations working to end violence in our world. Autism Empowerment is proud to partner with NWCAVE. We recently asked Executive Director and Co-Founder, Michelle Bart, CCA, CHTA to introduce their nonprofit to Spectrum Life Magazine readers. Michelle, the work you do is essential! Please tell our readers about NWCAVE. National Women’s Coalition Against Violence & Exploitation (NWCAVE) has a DREAM…a World Without Violence! We began in 2009 under a fiscal agent by producing a conference against human trafficking. In 2012, we decided to broaden our purpose with prevention and awareness of all forms of violence. We are now a 501(c)3 nonprofit based out of Vancouver, WA. Since 2012 we have provided programs and services in Washington, Oregon and California that help to inform, educate and prevent violence and exploitation against women and children nationally and internationally. Whether human trafficking, domestic violence, sexual assault, sexual violence, stalking, bullying, hate crimes and all other forms of violence and exploitation against women and children, NWCAVE strives to keep the public informed and educated on how we can live in a more civilized society free of violence. As an organizational co-founder, please share what inspired you to create this nonprofit organization.
IN THIS SECTION
As a rape survivor and child advocate, I believed I was put here to serve a purpose. NWCAVE serves this purpose. I am blessed to have a strong board and leadership of volunteers who all believe each of us can help end violence in society and stand for justice, human rights and equality.
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Today, whether we are working with police to find missing children or collecting bras for women and girls who need a gift of lift, or educating the public on anti-violence initiatives like sexual assault, domestic violence, bullying, internet safety or trafficking, then NWCAVE is carrying out our mission. As a rape survivor, the importance of ending the backlog of rape kits and keeping our kids safe on campus through our WA Says No More efforts, is giving me the voice for others today I didn’t have on Halloween in 1992 when I was raped. NWCAVE and our volunteers are helping my visions for a safer society come full circle, and I am truly blessed. Please tell us about the different programs, services and events offered. We have four divisions: • Missing Children’s Division - vital services to law enforcement and families • WA Says No More - our domestic violence and sexual assault program • Gift of Lift - bra program where we have collected and distributed over 20,000 bras to women and girls locally, nationally and internationally • National Training and Education Institute - Our conference against trafficking, No More Summit anti-violence conference, ongoing trainings, speakers bureau and education efforts happen in this division. Our special events include: Women’s Festival (happening in August 2020), Dinner & Dreams Gala and other events throughout the year. We also have two awards: The National Journalism Impact Award given at our conference and our Rita Corbin Burns Humanitarian Award, given out at our Women’s Festival. What kind of topics are covered through the training institute and speakers bureau? Under the direction of Dr. Kathie Mathis, we educate and bring awareness and prevention to the topics of: missing children, domestic violence, sexual assault, bullying, internet safety, LGBTQ tolerance, understanding the mind of a predator, and human trafficking, to name a few. Under this division we also produce our biennial anti-violence conference, the No More Summit. Do you or any of your key volunteers or partners have a personal connection with anyone diagnosed on the autism spectrum? Continued on next page
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NWCAVE has a DREAM, continued from page 38
Photo courtesy of NWCAVE
Yes, our Director of Health Services, Dr. Gloria Arroyo of Tristar Family Chiropractic and Wellness Center has a close connection and originally introduced us to Autism Empowerment. In addition, we have a few volunteers and partners who also have children and employees on the autism spectrum. Elopement or wandering is a common challenge that families in the autism community worry about. Please tell us about your Missing Children’s Division and your partnerships with local law enforcement. Under the direction of Eric Anderson, our Missing Children’s Division provides vital services to law enforcement and families. We specialize in media efforts, so when law enforcement asks us into a case, we can provide social media management, flyer creation and distribution, handling media inquiries for family and detectives, and ongoing efforts to keep a face and case visible. We see many kids that go missing in the autism community fall into this category too. We hope our Missing Children’s Division along with your organization, magazine, and community connections can help educate families and prevent kids and adults who are on the spectrum (and all children) from wandering and going missing in the future. Partnerships include Vancouver Police Department, Clark County Sheriff’s Office, FBI Victim’s Services, National Center for Missing & Exploited Children (NCMEC), the media, and now Autism Empowerment. Unfortunately, autistic children and young adults are also at a higher risk for trafficking and exploitation. What would you like parents to know? Always be aware of who your children are speaking with online, on their cell phones and on games like XBox Live. Children on the spectrum are easy to be friended by those with agendas; know their friends and watch their social media. When in doubt, make a call to the Human Trafficking Resource Center at 888-373-7888 or visit polarisproject.org/human-trafficking Editor note: We also encourage you to read Tara O’Gorman’s article, Human Trafficking - Protecting Our Most Vulnerable from our Summer 2017 issue, also online at: bit.ly/humantraffickingspectrumlife Currently NWCAVE is volunteer-operated. Do you have plans in the future for employed staff and a center? We have been all-volunteer since we were founded. So much of our funding sources, especially grants, cover the programs and expenses to run them, but not staff. We hope
very soon we can find the angel source to help provide funding for us to hire an executive director. Having a Community Resource Center is our dream. We had one for a short while but the business owner closed so we lost our space that was being donated. What kind of activities and workshops are on your schedule for 2020? We have our International Women’s Festival set for August 1, 2020. In addition, we have speaking engagements and ongoing trainings with Dr. Mathis. Although our No More Summit happens in March 2021, that too is already in planning stages. How can readers get in touch to utilize your services, to donate or volunteer? www.NWCAVE.org or at www.facebook.com/nwcave What else is important for Spectrum Life Magazine readers to know? No one organization or person can solve the problems in this world, let alone the many genres of violence and exploitation. We are a coalition and we pride ourselves on this, which is why our partnerships are of utmost importance to NWCAVE and the impact we have in the communities and people we serve. We cannot do this alone and we know that. We welcome Autism Empowerment, Police Activities League (PAL), Columbia Dance, Council for the Homeless, Pink Lemonade, Crittenton Services for Children & Families and the many organizations we are honored to call friends and partners! For a complete list visit: nwcave.org/about-nwcave/partners-donors References: 1. Centers for Disease Control and Prevention (CDC) Autism Prevalence (2018) www.cdc.gov/media/releases/2018/p0426-autism-prevalence.html 2. Disability Justice Resource Center - www.disabilityjustice.org 3. WA Says No More, an NWCAVE program wasaysnomore.org
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HEALTH + WELLNESS
Getting Your Body in Increase Activity Motion for the Holidays and Decrease Stress By Ryan Lockard, CSCS, CSPS
This may seem to your child like the best opportunity to binge on playing Fortnite, or finally create their own YouTube channel, however, it is important to get them moving. Exercise has been shown to help with self-regulation and help reduce stress, as well as the symptoms of anxiety and depression. The best way to get your child moving is by setting the example and joining them. Chances are that they are more likely to follow your lead.
Here are five ideas to increase your family’s activity level and decrease the stress of the holiday season. 1. Add a twist to your holiday traditions – Each family has their own traditions during the holiday season. Whatever yours are, try to add an active twist to it. Does your family decorate a Christmas tree? Well, where do you buy your tree? Stores have made it convenient for you by offering trees for sale outside, similar to pumpkins in October. Try going to a u-cut tree farm this season. Walk around the farm with your family trying to find the “perfect” tree. Not only is it a great way to bond and create memories, but it will also get the entire family active. 2. Make the TV your workout partner – It may seem like a constant battle to limit your child’s screen time, especially when they’re on winter break. I know that I used to LOVE the winter breaks from school because that meant I could FINALLY play the newest Madden football game and get through an entire season (or two) all while lounging in my favorite bean bag chair. Replace that bean bag chair with that exercise bike from the garage. (If you don’t have an exercise bike, they can be found on Craigslist for under $100). Incentivize more screen time for riding the bike while they play. Is your child not the video game type? No problem. You can add exercise breaks to any activity. Are they glued to the TV? Join them during the commercials for exercise time. Do they love reading a good book? Either agree on a page limit or set a timer before taking a quick exercise break.
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The exercises don’t have to be complicated. Do simple bodyweight exercises that will increase their heart rate or walk up the stairs of your hallway or apartment complex. Remember, kids are often more inclined to do the exercises with you, instead of by themselves. 3. Dude, where’s my car? – Raise your hand if you scour the parking lot to find the closest spot when going to the grocery store or mall? Ok, put your hand down. We are all guilty of this. Make an attempt to park in the back of the parking lot to increase the distance that you must walk to go shopping. And keep an umbrella in your car to limit your excuse of not walking due to the rain. 4. Sticker, please! – One thing that we’ve learned over the years at Specialty Athletic Training is that our clients LOVE stickers. We use a sticker chart at our Vancouver location and now we can’t imagine not having one. It is something that you can easily implement at home as well. Assign different stickers for different activities and then have a reward when a certain number of stickers has been reached. Did you walk for 30 minutes looking at Christmas lights? Green sticker. Did you and your child do exercises in between episodes of Stranger Things? Blue stickers for both of you. You get the idea. You can assign stickers and rewards however you want, but this should be a fun (and visual) way for the family to track their increased activity. Keep it fun and keep each other motivated! 5. Treat yo’ self – The holiday season can easily leave us feeling drained and our cups empty. Make sure to take the time to take care of yourself and refill your cup when needed. Try and take a nightly bubble bath, schedule that mani/pedi, or simply wake up 5-10 minutes earlier in the morning and meditate. The best way to take care of others is to take care of yourself. Plan time to get out of the holiday chaos and schedule in some “me” time. Photo courtesy of Mary Rebekah Moore
Winter is no longer coming; it is finally here! The holiday season is in full swing and your child is about to be home 24/7 with the schools taking a short hiatus. Changes in the weather and the daily routine may cause some increased anxiety and stress for everyone in the family, which is why it is even more important than ever to get your body moving!
Ryan Lockard is the founder and head trainer of Specialty Athletic Training, a personal training company located in Portland, OR and Vancouver, WA, that specializes in fitness programs for children and adults with special needs. He is a Certified Strength and Conditioning Specialist (NCSA) and Certified Fitness Nutrition Specialist (ISSA). He can be reached at Ryan@SpecialtyAthleticTraining.com or www.SpecialtyAthleticTraining.com.
Editor Note: We invited Ryan to write an updated version of his Winter 2017 article: Healthy Holiday Exercise Ideas - Fun without the Sun Read the original at our website: bit.ly/healthyholidayexercise
Happy Healthy Holidays! www.spectrumlife.org
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Morning appointments available now!
Bringing help and hope to children, adolescents, and their families.
Services offered:
Occupational Therapy
Sensory Integration Treatment
Physical Therapy
Speech Therapy Mental Health Therapy Medical Program/Naturopathic Services
Social Skills & Feeding Programs Gait Training & Myofascial Release Art and Play Therapy Parent Child Interaction Therapy
Locations: Oregon City, NE Portland, Hillsboro, McMinnville, Wilsonville, and Canby
Contact: nt4kids.org
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PEDIATRIC THERAPY CENTER Supporting Children With Developmental Needs • Occupational Therapy • Physical Therapy • Speech Therapy • Groups & Camps
971.249.2653
1815 NW 169th Place • Beaverton www.BOLDPediatrictherapy.com www.spectrumlife.org
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therapy
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THERAPEUTIC OPTIONS AND RESOURCES
IN THIS SECTION Rojo the Llama Tribute...................................................................................43 Upcoming Autism Empowerment Events.............................................46
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THERAPY
Rojo the Llama
A LLegacy of LLove
April 26th, 2002 - November 6th, 2019 By Karen Krejcha and John Krejcha Who can forget their first carrot kiss?
Rojo’s incredible journey:
It was love at first sight. Rojo the Llama and his best camelid buddy, Smokey were attending Autism Empowerment’s annual Easter Egg Hunt for Acceptance of All Abilities at McKenzie Stadium in Vancouver, WA. It was Saturday, April 19th, 2014.
From the day he was born on April 26th of 2002, Rojo enjoyed being around people of all ages. His handler Shannon Joy trained Rojo during Llama 4H club, finally achieving Grand Champion awards with him at the local and state levels in the Public Relations and Handler Class events.
Their entrance into the stadium was grand, truly befitting of the world’s most famous and beloved therapy llama. The llamazing pair bedecked with bunny ears and festive Easter attire were accompanied by llama mama, Lori Gregory from Mtn. Peaks Therapy Llamas & Alpacas. That day they greeted hundreds of youth and adults attending from as far away as Seattle, WA and Salem, OR. We received our first of many carrot kisses and a beautiful relationship blossomed. Over the next five years, Rojo, Smokey and their buddy Napoleon the Alpaca would attend many Autism Empowerment related events, including egg hunts, summer picnics, and sensory play dates. These would be just a few of the many memorable visits that Rojo made over the years to schools, hospitals, and adult-care facilities throughout our region. Everywhere he went, he was loved and remembered.
While he was at the fair, a spectator observed Rojo’s exceptionally gentle temperament, and suggested that he become certified as a therapy animal, so that he would be welcomed into various environments where his special qualities could benefit the lives of others. In July of 2007, Shannon Joy and Lori Gregory completed the Animal-Assisted Therapy Training through DoveLewis in Portland, OR and separately took Rojo through the final evaluation to become the first llama therapy team certified by DoveLewis. Over the years, Rojo the Llama became a legacy in the Portland metro and Southwest Washington communities. Rojo served for a llamazing 12 years as a therapy animal, making over 1,500 visits to adult care centers, schools, groups and organizations that supported youth and adults with a wide range of special health needs.
My husband John shares a couple of favorite memories: I have many fond memories of Rojo and he will always be in my heart. We held a sensory play event at Burgerville in East Vancouver. Our event was on the back patio which was near the exit for the drive-through. Karen and I recall hearing a youth shouting excitedly to their mom in the drive-through, “There is a big fuzzy animal outside and it is giving kisses!” The mom scolded the child for fibbing. Then I recall her looking over and almost getting into an accident as she realized her son was telling the truth. They then pulled into a parking spot, got out of the car and proceeded to get their own carrot kisses. One of my most treasured moments was in April of 2016. Our oldest son achieved the rank of Eagle Scout and we wanted to make his Court of Honor where he was to receive his award memorable. We were blessed to have Rojo serve as part of the Honor Guard in the opening ceremony. This was the first, and I believe the only Eagle Court of Honor that Rojo had ever taken part in. It is a memory that I will cherish. That was one of my favorite memories too. What made the occasion extra special was that my parents and John’s family were in town from out-of-state and also shared in the carrot kisses and Eagle Scout celebration. The looks on my parents’ and children’s faces were priceless. My kids, John and I loved Rojo so much. Those carrot kisses and fuzzy hugs will be cherished memories forevermore.
Rojo was ranked as the “#1 ‘Beyond the Showring’ PR Llama in the World“ for most of his life, and was featured in numerous publications, including Unlikely Heroes by Jennifer Holland and the cover of the 2019 Scholastic World Book of Records. He appeared on Huffpost Live, CNN’s Vital Signs, Nat Geo WILD’s Unlikely Animal Friends, and also was featured in O, the Oprah Magazine (April 2015). Rojo was also the star of two children’s books written by Shannon Joy and illustrated by Theresa Johnson. Rojo, The Perfectly Imperfect Llama and Rojo, Where is My Hair?! were both based on true life stories. Retirement and his last days: Sadly, just before his planned retirement celebration, Shannon and Lori noticed that he began showing signs of fallen health. They shared, “With optimism seeing him continue to eat and growing in spirit, the ‘old man’ made it to his retirement party,” a celebration hosted by DoveLewis on October 27th, 2019 in Portland’s Pioneer Square.
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ROJO the Llama Tribute, continued from page 43 “Maybe it was then that he felt all was right in the world, because just a few days later, he began not wanting food and starting to show severe signs of health issues. After being taken down to Oregon State University’s vet care, it was considered that Rojo may have hereditary defects, or even cancer, causing his body to begin breaking down so quickly. It was determined it would be in Rojo’s best interest to keep him comfortable until his llama mama, Lori, could come down and be with him when he crossed the carrot rainbow.” Lori shares, “Rojo’s last day outside, (Sunday, November 3rd) was a perfect day of sunshine and fun, spent with the sweet kids from the Autism Serves Kids Care Club and their families, as they came to help put up stronger fencing across the back of our pasture. Rojo had been to many events in the past with some of these kids, and was very loved by the autism community, so it was very fitting that they were the last group to spend time with him. We know Rojo enjoyed watching all of the activity, and LOVED all the attention, even though he wasn’t feeling well. We are looking forward to many more wonderful times on the farm with our Autism Empowerment friends!”
hearing impaired, dementia, and so many other health-related challenges – having Rojo there to help us to relate on a very intimate and personal level of unconditional love and acceptance, has changed our lives.” “We are already dearly missing Rojo, as he was a member of our family for 17 years, partner in our mission, and one llama in a million, but the lessons he has taught us will live on, as we continue the legacy he created, and continue to serve our community with his pasture mates, on and off the farm for hopefully, many more years to come.” To learn more about Rojo’s legacy and to support Mtn. Peaks Therapy Llamas & Alpacas, visit www.facebook.com/RojoTheLlama and www.rojothellama.com.
When we asked Lori for permission to do a tribute piece to Rojo for Spectrum Life Magazine, she provided us with her favorite Rojo Christmas photo which lovingly graces our Winter 2019 cover. Lori also wanted to share a few special thoughts. “The first time I ever encountered anyone with autism was when we first became certified with Rojo and visited Serendipity Center in Portland, which is an alternative school for children with various types of issues that make them unable to do well in a regular classroom environment. We had visited several senior communities and rehab facilities and wanted to do more with children, and a friend’s husband worked at Serendipity and invited us to come.” “We thought it would only be a one-time visit, however, after meeting those dear kids, and seeing the staff so amazed at all the positive responses to Rojo that they were observing, it made us want to put them on our regular schedule. We have now been visiting Serendipity for 12 years, on a monthly, and at times twice each month basis, and have seen for ourselves the difference Rojo, and our other animals have made in the lives of the kids, helping to bridge the gap between their personal comfort in physical touch and communication.”
Karen Krejcha is co-founder of Autism Empowerment where she serves as Executive Director. She is Editor of Spectrum Life Magazine and a vibrant public speaker. Karen was diagnosed on the autism spectrum in her 40s, after the diagnosis of her two children. She has been married to John Krejcha for over 27 years and is devoted to promoting a culture of acceptance and empowerment within the autism community and the world at large.
“Some of the kids that once hid behind furniture, or wouldn’t enter the room when we first brought Rojo, later became comfortable enough to run into the room to hug him and give ‘carrot kisses’. We’ve seen Rojo used as the inspiration for artwork, poetry, stories and songs, and the love for him has filled our hearts to overflowing on many occasions.” “In addition to the autistic community, Rojo has helped Shannon and I to have a love for all those who God has created with “special abilities”, as John and Karen, and so many others, have helped us to understand. Before becoming certified with Rojo, like many people, we had only had rare encounters with others that were “different” than ourselves, and we would shy away, not knowing how to respond because of our own ignorance. Now, after going out several times each week all kinds of communities – not only those with autism, but also that have down syndrome, cerebral palsy, sight or
John Krejcha is co-founder of Autism Empowerment and serves as Program Director where he oversees Community Outreach. He also serves on the Editorial Advisory Board of Spectrum Life Magazine. John is married to Autism Empowerment co-founder, Karen Krejcha and is the father of two amazing children and their cat, Zula. While John is the only one in the family who is not on the autism spectrum, he identifies as neurodiverse.
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Upcoming Events
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www.AutismEmpowerment.org
For a full listing of additional events and gatherings in our community, visit www.SpectrumLife.org and www.AutismEmpowerment.org
JANUARY 2020
MONTHLY
Monday, January 6th Sensory ZooLights at the Oregon Zoo! 5:00 pm - 8:00 pm Oregon Zoo 4001 SW Canyon Rd, Portland, OR 97221
Regal My Way Matinee Sensory Movie 10:30 am showtime, doors open at 10:00 am 7800 NE Fourth Plain Blvd. Vancouver, WA 98662
ZooLights Sensory Inclusive Night provides an experience for guests with different sensory processing needs and their families. Limited participation minimizes crowds. The zoo train will begin operating at 6 pm. shop.oregonzoo.org/#/SpecialEvents/ZLSNight
FEBRUARY Saturday, February 1st AE Adult Social and Game Night (18+) 6:45 pm - 9:00 pm Stephen’s Place 501 SE Ellsworth Rd, Vancouver, WA 98664 Come out and enjoy some social time playing board games, video games and card games. Suggested donation is $10.00. Please bring a snack to share. Saturday, February 29th Leap into Fun Game-O-Rama Fundraiser (All Ages) 4:00 pm - 8:00 pm NW Gospel Church 305 NW 192nd Ave., Vancouver, WA 98684 FUNdraiser for Autism Empowerment! Enjoy board games, card games, crafts, awesome raffle prizes, and silent auction! Family Fun! Admission is $5.00 per person or $20.00 per family. Special surprises! www.autismempowerment.org Autism Empowerment and Spectrum Life Magazine appreciate your support: www.AutismEmpowerment.org/donate
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www.spectrumlife.org www.spectrumsmagazine.org
Call 844-462-7342 ext 433 in advance for movie that will be showing and ticket price. Upcoming Dates: 2nd and 4th Saturday of each month Autism Empowerment offers Support Groups, Social Clubs, Game Nights and Volunteer Service opportunities. Please see our website for dates/times and Facebook group page links. Ongoing Support Groups: • Adults on the Autism Spectrum (peer-led) • AWEtism We Embrace (Adults, Parents, Allies) • Parents of Tweens, Teens & Young Adults Ongoing Social Groups: • SW WA Tween and Teen Social Club (11 - 19) • Adult Game Nights - Quarterly Ongoing Service & Volunteerism: • Autism “Rocks” - Rock painting, hiding and collecting (All ages) • Autism Serves Kids Care Club (8 - 18) • Autism Serves - Volunteerism for all ages Connect with us online! /SpectrumLifeMagazine /AutismEmpowerment @SpectrumLifeMag @AutismEmpowermt AutismSpectrumLife
Autism Empowerment
Autism Empowerment
Bringing Joy to Therapy Currently providing ABA Assessments!
SERVICES
• ABA Therapy • Speech Therapy • Occupational Therapy • Social Skills
Contact us today to schedule your ABA assessment. There is currently no wait list! Vancouver, WA • 360.953.5460 www.thriveautismcenter.com info@thriveautismcenter.com
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As an Independent Apartment Community (IAC), Stephen’s Place offers positive living options for adults with developmental disabilities. fo With forty-one modern apartments, our focus is on community; empowering and enabling each resident to be a productive contributing member of their community.
Call or email us to schedule a tour (360) 984-3600
info@stephensplace.org 501 SE Ellsworth Road, Vancouver, WA 98664
Apartment rent is inclusive of all meals, supportive services, nursing & ADL assistance and programming including: Job Skills Training, Placement & Coaching Life Skills Training Ho Horticultural Therapy Group Fitness Classes & Yoga Arts & Crafts Movie Nights Sporting Events Group Outings to Local Attractions Transportation Services We also offer a Day Program to people who live outside of the Stephen’s Place community, but would like to build peer relationships
Learn more about us @ www.stephensplace.org
and participate in activities.