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SpectrumLife PORTLAND AND SW WASHINGTON’S ONLY MAGAZINE FOR THE AUTISM COMMUNITY TM
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SOCIAL SUPPORT AND AUTISM FAMILIES SKYHOOK NINJA FITNESS WORKING AS AN AUTISTIC PARA BLEEDING: AN INSIDER’S ACCOUNT MAKING FRIENDS AT CAMP YAKETY YAK KULTURECITY: RETHINKING ACCESSIBILITY
FALL 2019
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contents
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Social Support AND Autism Families (The Ties that Bond)
FEATURED SECTIONS EDUCATION
ADVOCACY
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Bleeding - An Insider’s Account Stories from the Spectrum: Michael Jubaris. Communication Supports for Speaking Autistics? Erroneous beliefs do not change facts.
LIFESPAN
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The Ties That Bond Social support and autism families. Ask Spectrum Life Questions focus on bullying prevention and finding employment.
Recreation
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Think Before Firing Off Words have power. Use them wisely. Working as an Autistic Para Insight inside the classroom. The Three Ps Private Schools, Placement, and Payment.
HEALTH + WELLNESS
36 38
KultureCity Rethinking accessibility. Promoting inclusion.
Skyhook Ninja Fitness Neurodiverse ninja warriors welcome! Setting the Healthy Example Our children are watching.
therapy
41 44 46
Making Friends at Camp Yakety Yak From SocialSibs to Playmakers. Spectrum Life Resource Directory Spectrum Life Magazine helps you find autism-friendly service providers. 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
FALL 2019 | VOLUME 8, ISSUE 3 SPECTRUM LIFE MAGAZINE TM A program of Autism Empowerment TM Karen Krejcha, Autism Empowerment, Publisher Dave Born, Graphic Designer Welcome to the Fall 2019 edition of Spectrum Life Magazine! Fall always proves to be an interesting time when it comes to curating content to include in our magazine. As students and educators work to get back into school routines, parents search for resources that will start the school year strong and make their family units stronger. Adults often search for support with employment and wellness. It’s a fine balance choosing topics. Our magazine starts off with a heartfelt and candid piece from an autistic writer, sharing an issue which is often taboo but needs to be discussed. Read Bleeding: An Insider’s Perspective on page 8. With National Bullying Prevention Month and National Disability Employment Month both in October, this issue’s Ask Spectrum Life on page 17 features questions focused on bullying prevention and employment resources. Our cover story on page 13 focuses on Ties That Bond: Social Support and Autism Families. It is our first piece from Washington State University Vancouver professor, Dr. Laurie A. Drapela. We have another university professor also contributing. Dr. Amy Donaldson from Portland State University collaborates with Erica Veach, Megan Wilder, and Angela Sullivan to share about Making Friends At Camp Yakety Yak: From SocialSibs to Playmakers on page 41. Topics in our Education section include pieces from a high school English teacher, an autistic paraeducator and a Special Education law firm. See Think Before Firing Off on page 28, Working as an Autistic Para on page 30 and The Three Ps: Private Schools, Placement, and Payment on page 32. You also won’t want to miss our feature on KultureCity: Rethinking Accessibility on page 22. By training public venues such as the Oregon Zoo and Moda Center how to be Sensory Inclusive™, they also promote that inclusivity is a social justice issue. Their mission to create acceptance and inclusion for all individuals with unique abilities ties in with what we believe too. Our desire is to support all age and ability levels, promoting a culture of health, opportunity and inclusion from birth throughout the lifespan. We believe people are stronger individually and collectively when each of us has what we need to be able to fully participate in community life. Happy Autumn!
Karen Krejcha Executive Director & Co-Founder: Autism Empowerment™ Editor: Spectrum Life Magazine™
Editorial Advisory Board: 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
This issue’s cover connects with themes of Health, Wellness & Family Support. See our cover story: Ties That Bond: Social Support and Autism Families on page 13. Photo courtesy of Derick Santos
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advocacy EMPOWERING CHANGE WITHIN THE AUTISM COMMUNITY
IN THIS SECTION Bleeding - An Insider’s Account.....................................................................8 Communication Supports for Speaking Autistics? ............................ 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
Bleeding: An Insider’s Account STORIES from the SPECTRUM By Michael Jubaris
Autism from an Autistic perspective
As I look down at the scars on my arms, I am glad that my skin is so white. This lack of a stark contrast has allowed me to mask the pain that I was once trying to bleed out. Although my battle with bloodletting has long been over, I still encounter its ugly banner far too often with the students that I serve. I know that my quiet victory will not end the plague of these internal wars, but I hope that my experiences will help keep others from making the same mistake of taking up the knife.
Growing up with undiagnosed autism, I was usually described as a perfectionist. I was a child whose scores demonstrated “wonderful potential” but one who was silently wracked by anxiety of what others would think of him. It was this union of perfectionist thinking, anxiety, and self-doubt that would eventually lead me to bleed. Outside my family, school was at the core of my life. It was my desire and my hatred. I loved to learn and demonstrate what I knew, but I despised writing it down. I would refuse to work at school where others could see
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as I knew I would just have to erase it when better ideas came to me. I would correct and edit the same sentence countless times until my mind would finally run dry and then I would move on with a sigh. As I strived to impress people and make friendships by demonstrating the amount that I knew, even my simplest projects grew and grew. As the school year progressed, my workload continued to grow, and on due days I was the only one whose work was not done. As this became a constant occurrence, I
decided that my presence was no longer needed. I would ask myself, “Why should I go to school when I have so little work done when I can stay home and escape all of the demands for answers that came from my teachers?” The longer I stayed away from school, the more I feared returning to answer for my uncompleted work and absences. These thoughts kept me awake at night and sick during the day so that all I wanted was for it all to go away. I figured if my teachers could only see how much I cared, they would not give up on me and continue to
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Bleeding: An Insider’s Account, continued from page 8
For those of you who suffer, as I once did, I plead with you to look to those around you for support. There are many people and organizations that truly care. Sometimes you just have to break down the wall that has been built there. People may not always know exactly how to react because this subject seems to be forbidden. Just because a person does not react in the way you need or expect does not mean they care any less. A wall that surrounds you is never beneficial because you will never be able to reach the potential that people believe you should. To those who have someone who bleeds in their life, please remember the chance they are taking by allowing you to see. When a person bleeds, what you are seeing is their heart in its utmost pain. I know this subject may be taboo, but as a society, we need to change so people know what to do.
Searching for support for yourself or a loved one?
help. It was during one of these dark thoughts that I picked up a knife and bled as a way to prove my sincerity. I reasoned that such an act would prove my dedication to my work, and besides, my body would heal but my grades would not. As I continued to bleed, the pain became more tolerable. This self-inflicted suffering soon became a substitute for the dull heartache that I live with every day. I began to even feel it was like a safety valve to release all that pent-up pain. This valve continued to be reopened for years to come, but I would not listen when others would say that this was not the way. Then finally one day, during a meltdown, my family, in desperation, agreed to temporarily send me away. That week seemed like forever and all I wanted was to be set free. For a decade I continued to live with the feeling of being abandoned and betrayed until another occasion when they once again proved their love for me. Even after this reassurance that my family was still a safe haven, I once again opened the skin valve on my arm. However, after a highly emotional and frank talk about how my acts were affecting those that I truly love, I realized that there are better ways to ask for help. It was then that I realized the importance of trusting those around you for better or worse. And I have since put away the knife and my other instruments of pain.
Crisis Text Line: If you’re dealing with painful emotions, we’re here to help. Shoot us a text to connect with a real human and strategize healthy coping mechanisms to manage your emotions. Text HELLO to 741741 to connect with a real human. See our webpage for additional support. https://www.crisistextline.org/selfharm Helpguide.org is a nonprofit mental health and wellness website that provides empowering evidence-based information that you can use to help yourself or your loved ones. This link is meant for someone who is directly cutting or injuring themselves and wants to stop, as well as for family members or friends looking to gain understanding and provide support. www.helpguide.org/articles/anxiety/cutting-and-self-harm.htm S.A.F.E. Alternatives is a professional organization with a website that provides community support, treatment programs and article resources. You can call the S.A.F.E. Alternatives information line in the U.S. at 1-800-366-8288 for referrals and support for cutting and self-harm. www.selfinjury.com
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ADVOCACY
Communication Supports for Speaking Autistics? Erroneous beliefs do not change facts.
By Judy Endow As an autistic, I know firsthand how my communication abilities are different from the neuro-majority of people around me. Most people do not understand my differences because I can speak. On the surface, my communication abilities appear normal. This makes it very difficult for people to understand why when I need accommodations, they are just that – accommodations – and not personal preferences.
My communication abilities and efforts are what they are, whether you choose to believe it or not. I understand and can say this because for many years, I did not believe my own body could betray me so often. However, I discovered that not believing in it never once changed it. At one time, people did not believe the world was round. They believed it was flat. The erroneous belief did not change the facts. Today when you have erroneous beliefs about me it does not change who I am. It does not change what skills and abilities I am able to access in the moment. Unfortunately, the beliefs of the majority, erroneous or not, often determine my opportunities. This is because the majority holds the power in bestowing upon the minority. The assumed power of being in the majority makes you superior, whole, and right while making me less than, broken, and wrong. You and I do not decide these things, but they are the societal assumptions we live by. In fact, you don’t even have to think about it, but if you do – whether you like it or not – being part of the majority gives you power over the minority. If you identify in the majority (for example, as a parent) how do you use your power?
For example, even though I can speak to crowds of thousands of people, my neurology does not permit me to engage in telephone conference calls in a meaningful way. The most I can do is listen, but after a few minutes, I cannot process the words of the several different voices I can hear over the phone line. Actually speaking on a conference call is not something I am able to do. I have found some online video chat alternatives that do work for me and allow me to participate in national workgroups. It is necessary for me to see the people and to have the person talking visually highlighted so my brain can process the words that are being spoken. Also, I need to be able to type my words because I am not able to access meaningful spoken words while tracking and processing the talking of the group. Group Skype and GoToMeeting are two platforms that allow me to participate. It is difficult for people to understand that a person who speaks internationally would find it impossible to participate in a telephone conference call. I totally get this because I too find it difficult to understand! Even though I have lived in my body for more than 50 years now, I still do not always understand it but have learned to believe it and work with it, outsmarting the difficulties of autistic neurology to be and do what I want in this world.
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• Do you honor autistic difference or do you insist your child do things exactly the way other children do them? • Do you try to find accommodations that will allow your child to participate in what you ask of him or do you express displeasure in or discipline him for failure to perform a task he has previously mastered, assuming it is willful behavior? • Do you believe your child cannot do something when his access to skills and abilities are intermittent or do you assume that once a skill is performed your child is being stubborn or resistant if he cannot perform it consistently? Many adults fear that if they listen to their child’s behavior or words, they will be “giving in” and spoiling their child. They fear their child may get away with something. After all, how do you know when it is the autism and when it is behavior? In my experience, it is rare that it is only behavior. Instead, it is most often a function of autistic neurology – the way a person with autism understands and interacts in the world. But even if you remain skeptical, the least dangerous assumption is to believe it is the autism. If you assume it is the autism and you are wrong, your child may “get away with” some behavior until you get it figured out. If Continued on next page
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Communication Supports For Speaking Autistics?, continued from page 10 you assume it is willful bad behavior and you are wrong, your relationship of positive regard and trust with your child will have suffered. Your child needs you to be on his side, to believe in him. When you don’t believe in him, you effectively silence him.
This article was originally published for Ollibean.com on November 6th, 2014. It also appears on Aspects of Autism Translated at www.judyendow.com.
Just because majority power has been used to silence autistics since the beginning of time, especially when it comes to our communication differences, doesn’t mean we need to continue on this course. People changed their beliefs about the world being flat when they saw it was not true. I have hope that people will someday change their beliefs about how autistics communicate when they see what they believe is not the truth. It is why I am writing this! In the meantime, please know all autistics are human beings – whether able to speak or not, we communicate, we have feelings, we have empathy, and just like you, we need to love and to be loved – whether you believe it or not. References: Endow, J. (2013). Painted Words: Aspects of Autism Translated. Cambridge, WI: CBR Press. Endow, J. (2009). Paper Words: Discovering and Living With My Autism. Shawnee Mission, KS: AAPC Publishing. Endow, J. (2009) The Power of Words: How we speak about people with autism spectrum disorders matter! Shawnee Mission, KS: AAPC Publishing.
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. Judy can be reached through her website, www.judyendow.com.
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lifespan ALL AGES AND ABILITIES
IN THIS SECTION The Ties that Bond: Social Support and Autism Families............... 13 Ask Spectrum Life.............................................................................................. 17
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LIFESPAN
The Ties that Bond: Social Support and Autism Families By Laurie A. Drapela, Ph.D. Humans are a very complex species, capable of great destruction as well as great feats of compassion. In the midst of our current discussions about evil, lethal weapons, and basic rights, it is important for us to remember that one of the best human qualities we possess is the ability to develop social support for one another. Social support is typically thought of as positive words, gestures, advice, aid (either financial or in-kind), or other assistance to those in need of help.
child’s neurological difference did so with the intention of disenrolling her from the curriculum, citing staffing limitations on “working with kids like that.”
Its greatest blessing is that giving social support is as enriching as receiving it. History, literature, music, and film chronicle the rich sources of social support between and among us. It helps us survive the worst we can do to each other and reminds us that the simple act of extending a hand to another and saying, “I am here for you” has added one extra day to the lives of many, on both giving and receiving ends. Autism families are as human as anyone else in this regard. Every parent of a child or children with autism can tell you the story of when they knew their family was different from other families. They can also share with you the long journey from this intuition to a [correct] diagnosis, then to autism awareness, and finally to autism acceptance. In my years of living in the autism community (‘aut community’), acceptance is borne of two things: social support and internalizing the social model of disability. I was incredibly lucky to have an embarrassment of riches on both fronts when my child was diagnosed with autism about ten years ago. When we welcomed our child into the world, my husband remarked shortly afterward that she did not make eye contact very often and he wondered aloud whether she had autism. I dismissed him out of hand, noting that she made plenty of eye contact with me when she was breastfeeding and that our pediatrician had not noticed any signs of autism or other neurocognitive condition. Yet as she approached her third year, the differences magnified upon her transition to preschool. Daycare workers shared that she lingered in “parallel play” and was reluctant to engage other toddlers in the rudimentary social play characteristic of that age and developmental stage. Toilet training was difficult; she toe-walked like a ballerina and loved to play with sticks – the same way, every day. In the absence of any prior parenting experience, these issues didn’t seem to warrant our concern: our child was happy, well cared for, and hitting major developmental milestones within the ‘normal’ time frame. Ironically, it wasn’t until we enrolled our child in a preschool affiliated with a local institution of higher education that autism was first mentioned to us. I note the irony here because we learned over the course of our year in this program that the preschool so adept at identifying our
After a year in the program, the preschool’s director and my child’s teacher requested a meeting with my husband, myself, and a local clinical psychologist who had assessed my daughter. Once the results were discussed and the autism diagnosis presented, we were notified that the program could serve us through summer, but my child would no longer be welcome to attend the program come August (it was currently March). In a curriculum designed to integrate research on best practices in early childhood, my husband and I were shocked by the preschool’s decision to discontinue services by the end of the summer. Surely there were best practices that could be put into place with children who were a little different? “Not here,” we were told by the school’s director. So it began. As painful as these memories are, I must give credit where credit is due: the preschool’s director wasn’t wrong - my child is autistic. Moreover upon dismissing my child from the preschool for the coming year, the director gave us a number of referrals that turned out to be positively life-changing for our family. I am still grateful for these resources (and that we had the wisdom to follow up on them!). But the initial shock was tremendous. Continued on next page www.spectrumlife.org
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The Ties That Bond, continued from page 13
No one in my family had ever been diagnosed with autism (the same for my husband) and I felt stunned by the diagnosis but also felt very uncomfortable feelings about my feelings about the diagnosis. Even after the disability rights movement of the 1980s and the emergence in the 1990s of the social model of disability – which holds that most conditions differing humans from one another are not inherently disabling but simply made that way by infrastructures and ideals propagated by a few upon the many - the stigma against autism was very real for me. I reached out to a close friend. She had been through the wringer the last few years with her ten-year-old son who was suffering from a combination of bi-polar disorder and post-traumatic stress disorder. He had been involved with the juvenile court for about the past year and I’d listened to her and provided support, sometimes shared advice about my knowledge of the juvenile justice process, and went to juvenile court with her as often as I could. We had forged a strong bond. In addition, her teenage brother was a person with autism and I knew she would be a great source of support about my child’s diagnosis and my feelings of being overwhelmed about what to do next. To this day, we are still very close even though she has moved away and started new adventures in her life. I’m also still in contact with her mother, who remains a strong source of social support for our family. Our children are lifelong friends and we are planning a reunion over Labor Day weekend 2019. Like many parents of a child or children with autism, my foray into social support started slowly. After the initial diagnosis – whether it be met with shock (as in my case) or relief at an answer (as is a common reaction for many) – parents work to access as many services as possible to help their newly-diagnosed children. It can be a dizzying array of appointments balanced with school, work, parenting other children, and running a household. As parents of neurodivergent children, we focus so intently on our kids’ needs that we put ours in the background, meaning to get to it later. Many give us well-meaning advice, such as finding a support group. Upon hearing this I would say in my head, “Is it on the moon? ‘Cause it may as well be.” For me, social support started informally in conversations
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with other parents of children with autism in pediatricians’ waiting rooms, occupational therapy labs, speech pathology workshops, and social coaching curriculums. These places provided a place for me to relax, listen, and share. Every parent I saw was a parent learning about autism while incorporating it into their lives, so there was no shame in my child’s difference. I felt safe and accepted in these places. Providing safe space to share thoughts and feelings – and hear the thoughts and feelings of others – is a critical element of social support for parents of children with autism. Scholars refer to this as expressive social support – namely meeting one another’s needs for love, affection, and emotional validation. As I built my informal support network, I also realized that I needed more formal sources, capable of delivering instrumental social support. This kind of social support helps people establish formal relationships to enhance capacities for achieving desired goals. Parents of children with autism are like all parents: they want the best for their children so all can live happy and productive lives. Negotiating a world that rarely practices autism acceptance impedes our abilities to achieve these goals. The way others react to autism is often a greater barrier to achieving school success for autistics than the neurological condition itself. While the social model of disability opens up greater opportunities for all humans to benefit from relationships with neurodivergent people, educational institutions and employers must make efforts to practice inclusion and acceptance of persons with autism. Evidence suggests that university training curriculums – such as the federal Transition and Postsecondary Programs for Students with Intellectual Disabilities (TPSID) - as well as lived experience with autism (or a close relative with autism) increases college students’ openness toward persons with autism. Employers who practice autism awareness in employee recruitment and retention report better work outcomes for persons with autism as well as the organizations in which they work. These types of instrumental social support provide both material assistance as well as positive social signals to persons with autism, their families, and society at large. Continued on next page
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The Ties That Bond, continued from page 14 Social support does more than satisfy advocacy needs for people in society, however. Research shows that social support correlates with physical and mental health outcomes. Specifically, social support enhances positive emotions and feelings (linked to endorphins) as well as buffers the harmful effects of stress hormones (such as cortisol). Persons with higher levels of social support tend to feel emotionally healthier and happier as well as report good physical health, relative to those with weak social support.
may not have the time to devote to yet another institution outside of our jobs and families. I took a gradual approach to increasing my participation in instrumental social support. A few years ago, I made the decision to include knowledge about autism in my teaching and research work as a criminal justice professor. This change broadened my knowledge of autism and how the system can and should work with persons on the spectrum and their families to make the system more just for all involved.
Much of the research in this area is “in the eye of the beholder” so to speak, but the associations between high levels of perceived social support and positive mental and physical health has persisted over time and across place. While this research connecting mind and body does not delve into specific subgroups of our population, there is evidence that social support enriches humans of all statuses. Persons with autism articulate valuing friends and bonding within friendships; parents and teachers of very young children report increases in social sensitivity after completing an empathy-enhancing curriculum; and in a radically different application of human kindness - persons who are incarcerated and using social support in hospice care of other inmates describe an emotional transformation many had not expected. This limited but wide-ranging set of examples illustrate the physical, social, and mental health benefits of giving and receiving social support.
Integrating an acceptance-oriented perspective like neurodiversity into my classes has hopefully enhanced my students’ understandings of how a neurological difference like autism enriches all of us as human beings. The decision to actively engage social support on a daily basis brings out the best we have to offer the world. Belief in the staying power of building each other up has positive, lasting effects on our world. How do you find resources for social support? Sometimes it’s just as simple as opening up the newspaper. About three years ago, I was reading The Columbian and saw a feature on kids with autism performing community service by collecting food for the Clark County Food Bank as part of the annual ‘Walk and Knock’ food drive here in Southwest Washington. I sent an email to the contact person described in the article and so much changed for the better for myself and my family.
So, how do we enhance social support in our daily lives, on both giving and receiving ends? Expressive social support – those kind words or gestures to another showing you care about them – can be rather easily achieved with a quick phone call or nice text or email to those in need. Even just noticing when someone seems a little down and saying something nice to them or giving them a smile can make both of you feel better. Reaching out to someone who is hurting and letting them know you are thinking of them may not feel like you are really “doing” anything, but it brings something positive to both of you. Instrumental social support – being part of formal organizations to help those in need achieve their desired goals – can be more challenging to develop. Many of us work – a lot (some for pay and some not) – and feel like we
Since 2017, I’ve been supporting and supported by Autism Empowerment and have loved it. My child participates in the Kids Care Club, giving back to the Vancouver community through volunteer activities serving veterans, the homeless, the elderly, the hungry and others living in Clark County. We also participate in the monthly AE Teen and Tween Support Group, where the kids play at various activities and the parents share and learn in facilitated support groups. Participating in these activities provides me a support network of parents who love and nurture children with autism and enriches my child through friendships with kids on the spectrum. We have a community that simply understands. References: 1. Cullen, Francis T. “Social support as an organizing concept for criminology: Presidential address to the Academy of Criminal Justice Sciences.” Justice Quarterly 11.4 (1994): 527-559. 2. Kapp, Steven K. “Social support, well-being, and quality of life among individuals on the autism spectrum.” Pediatrics 141. Supplement 4 (2018): S362-S368. 3. Nevill, Rose EA, and Susan W. White. “College students’ openness toward autism spectrum disorders: Improving peer acceptance.” Journal of Autism and Developmental Disorders 41.12 (2011): 1619-1628. 4. Drexel University Life Court Outcomes Research Program AJ Drexel Autism Institute https://drexel.edu/autismoutcomes/ 5. Thoits, Peggy A. “Mechanisms linking social ties and support to physical and mental health.” Journal of Health and Social Behavior 52.2 (2011): 145-161.
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LIFESPAN The Ties That Bond, continued from page 15 6. Rosqvist, Hanna Bertilsdotter, and Charlotte Brownlow. “What’s the point of having friends?”: Reformulating Notions of the Meaning of Friends and Friendship among Autistic People.” Disability Studies Quarterly 35.4 (2015). 7. Domitrovich, Celene E., Rebecca C. Cortes, and Mark T. Greenberg. “Improving young children’s social and emotional competence: A randomized trial of the preschool “PATHS” curriculum.” The Journal of Primary Prevention 28.2 (2007): 67-91. 8. Cloyes, Kristin G., et al. “To be truly alive: Motivation among prison inmate hospice volunteers and the transformative process of end-of-life peer care service.” American Journal of Hospice and Palliative Medicine® 31.7 (2014): 735-748. 9. Vogt, Tom. “Walk and Knock Bags Nearly 115 Pounds of Food.” The Columbian, 3 December 2016, http://bit.ly/2016WalkandKnock
Looking for Social Support? Many nonprofit advocacy organizations promote social support groups for persons with autism and their families (either together or in separate groups), as well as families embracing other types of neurodivergence. Here are some links to get you started. Autism Empowerment – Southwest Washington and Portland, Oregon metropolitan area https://www.autismempowerment.org An advocacy organization that provides support, service and social activities for youth and adults on the autism spectrum and their families. Additionally provides educational resources and links to a broad array of professionals whom support neurodiverse communities. Autism Society of Oregon – Serves throughout Oregon and Southwest Washington http://autismsocietyoregon.org/support/support-groups-by-region/ ASO serves as a clearinghouse for all types of support groups related to autism for adults, youth, and families. Regions 6 & 8 support the Portland metro area. National Alliance on Mental Illness – Southwest Washington https://namiswwa.org/support-groups/ NAMI provides a broader array of support groups, incorporating neurodiversity as well as resources devoted to recovery from substance abuse. Groups focus on creative writing, arts, and general social support. National Alliance on Mental Illness – Oregon (Multiple counties) https://namior.org/resources/local-affiliates/
Laurie Drapela works as an associate professor of criminal justice at Washington State University Vancouver while raising a middle school child with autism and spending time with her family. Dr. Drapela’s research areas include juvenile justice, therapeutic specialty court programs, and intersections of behavioral health, mental health, and criminal justice. She volunteers with autism advocacy organizations in the Vancouver community and has recently authored a book with two colleagues comparing autism and juvenile justice policy between Canada and the United States.
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NAMI provides a broader array of support groups, incorporating neurodiversity as well as resources devoted to recovery from substance abuse. Groups focus on creative writing, arts, and general social support. Parents Empowered and Communities Enhanced (PEACE) - Support Groups https://peacenw.org/resources/support-groups/ PEACE provides a diverse set of support groups for both children and adults on the autism spectrum. Home to the Clark County Parent Coalition and Parent to Parent programs in Southwest Washington, this webpage serves as a clearinghouse for these resources, providing brief descriptions as well as links and contact information for each group.
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LIFESPAN
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 and topics in our community. Dear Spectrum Life: We recently moved into the area from across the country. I have one child on the spectrum in elementary school, a child with ADHD in middle school and a child on the spectrum and with epilepsy starting high school. They’re all great kids but I’m really worried about them being teased or bullied. Do you have any resources that can help? Thanks! Olivia in Camas Dear Olivia, First, welcome to the Northwest. We hope you and your family enjoy your time here and are able to get connected within the community. Southwest Washington is home to Autism Empowerment (the nonprofit which creates and publishes Spectrum Life Magazine), as well as a variety of other wonderful nonprofit advocacy organizations, social and sporting activities, service opportunities and support groups. As there are many families in our community with children on the spectrum who are a similar age, there are many opportunities for positive connection. We hope as you become more settled, you’ll reach out and become involved. As far as your question about bullying and teasing, we respect your concern. It’s a topic very important to us, as it unfortunately comes up so often in our community. Parents play a key role in preventing and responding to bullying. Many times kids won’t ask for help, so it is important to know what to look for. Here are some articles from the Spectrum Life Magazine archives where we have talked about this subject in the past, including warning signs, bullying definitions and legal rights. We have the blog versions at www.SpectrumLife.org. (Note: Our publication name was Spectrums Magazine from 2014-2017.)
A Parent’s Guide to Bullying (My Child is Being Picked On. What Should I Do?) by Diane Wiscarson and Taylar Vajda from Wiscarson Law (Fall 2018) bit.ly/bullyingsupportwiscarson Bullying and Disability Harassment in the Workplace (Fall 2016) bit.ly/bullyingworkplace Invisible Disabilities - Living with Challenges We Can’t Always See by Jennifer Costa (Fall 2015) bit.ly/invisibledis Bullying 101: Strategies for Self-Advocacy and Self-Prevention by Joanna Blanchard (Fall 2014) bit.ly/bullyingprevention101 As far as comprehensive national resources for parents, families and educators, we recommend visiting PACER Center at www.PACER.org. PACER Center is a parent training and information center for families of children and youth with all disabilities from birth through young adults. Located in Minneapolis, their resources serve families in Minnesota and all across the nation. Parents can find publications, workshops, and other resources to help make decisions about education, vocational training, employment, and other services for their children with disabilities. Of specific interest in relation to your question, PACER’s National Bullying Prevention Center provides resources designed to benefit all students, including those with disabilities. Resources are developed to be appropriate to age and ability level. There are printed resources in English, Spanish and Somali. Continued on next page www.spectrumlife.org
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Ask Spectrum Life, continued from page 17 PACER.org/Bullying provides parents, administrators, educators and community leaders with the resources to raise awareness of bullying and provide education, including how students can take an active role in addressing bullying. Resources include interactive websites, lesson plans, classroom toolkits, informational handouts, videos, petitions, and more. The resource section specific to children with disabilities can be found here: www.pacer.org/bullying/resources/students-with-disabilities They also have developed two separate websites for children and teenagers. One important feature of these sites is seeing videos of youth talking to other youth in relatable ways. PACERTeensAgainstBullying.org is a website created by and for teens. It’s a great place for middle and high school students to find ways to address bullying, take action, be heard, and join an important social cause. PACERKidsAgainstBullying.org is a creative, innovative, and educational website designed for elementary school students to learn about bullying prevention, engage in activities, and be inspired to take action. You will likely be hearing more about bullying prevention this fall since October is National Bullying Prevention Month, a campaign in the United States founded in 2006 by PACER. The campaign unites communities around the world to educate and raise awareness of bullying prevention. Unity Day, the signature event of National Bullying Prevention Month, has been recognized in the United States since 2011 and this year is on Wednesday, October 23, 2019. To participate in Unity Day, individuals, schools, communities, and businesses wear or display orange to show support for students who have been bullied.
at risk, and how you can prevent and respond to bullying. www.stopbullying.gov Workplace Bullying Institute - WBI is the first and only United States organization dedicated to the eradication of workplace bullying. They offer help for individuals, training for professionals, unions and employers, and consulting solutions for organizations. They also perform research and offer books and public education. www.workplacebullying.org Dear Spectrum Life: I recently finished school and I want to work full-time. I’ll even take part-time. My parents were told that there was a vocational rehabilitation program that could help but when I applied, I was put on a long waiting list and told that “my autism wasn’t significant enough to impair me” and it might be six months before I can even see someone and even after that, it might be a year or more before I get hired, if at all. Can you let me know of some places or websites that might be able to help? Signed, Unemployed and Unhappy
Dear Unemployed and Unhappy, The anxiety and frustration you are feeling right now is very common, and it is one of the biggest challenges that autistic adults in the Portland metro and Southwest Washington area currently face. There is something inherently wrong about being told by an agency that specializes in helping people with autism and other disabilities find employment, that they are not autistic or disabled enough to receive employment support. What to do in the meantime?
“ORANGE provides a powerful, visually compelling expression of solidarity,” said Paula Goldberg, Executive Director of PACER Center. “Whether it’s hundreds of individuals at a school wearing ORANGE, store owners offering ORANGE products, or a community changing a landmark to ORANGE, the vibrant statement becomes a conversation starter, sending the supportive, universal message that bullying is never acceptable behavior.”
The fact that you chose to reach out for suggestions shows initiative. That is a trait that employers appreciate because it shows that you are the kind of person who also has the ability to be resourceful and resilient.
Other bullying prevention related websites which we have found to be useful for youth, adults and families in our community include:
Getting Hired - www.gettinghired.com
Cyberbullying Research Center - The Cyberbullying Research Center is dedicated to providing up-to-date information about the nature, extent, causes, and consequences of cyberbullying among adolescents. The Center also explores other adolescent behaviors online including sexting, social media misuse, digital dating abuse, and issues related to digital citizenship, resilience, empathy, school climate, and more. www.cyberbullying.org StopBullying.gov - This official United States government website provides information from various government agencies on what bullying is, what cyberbullying is, who is
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Although there is no easy formula we can give you to make just the right employment opportunity appear, here are some resources, and hopefully one will help.
Getting Hired, an Allegis Group Company provides a free online service that specifically supports individuals and veterans with disabilities in finding jobs. They have job listings from disability-friendly employers in the Portland metro and Southwest Washington regions and throughout the country. The kinds of opportunities are varied in type of work, hours and industry. Some of the things you can do on their website: • Upload resume and submit to employers with job listings. • Participate in Virtual Career Fairs with employers throughout the country. • Take part in educational webinars or watch playbacks from previous events. Continued on next page
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Ask Spectrum Life, continued from page 18 Here were some of the companies in our region with job listings on their website at the time we went to press in early September 2019: Amazon, American Red Cross, Bank of America, CB Richard Ellis Group, Comcast, FedEx, Nike, Quest Diagnostics, Sodexo, Spectrum, Staples, United Health Group and Walgreens. Here is an example of the kinds of positions that were listed:
How do I ask other questions or request special accommodations? All of our locations are ADA accessible. If you have any other questions or needs, please call the INCIGHT office at (971) 244-0305 or email info@incight.org. How do I register? Sign up at: www.eventbrite.com/e/portland-job-fair-jobsnoworg-tickets-59535202393
Call Center Service Rep, Cook II, Courier, Customer Service Associate, Design Assist, Driver, Food Manager, Material Handler, Materials Mechanic, Maintenance Technician, Operations Manager, Pharmacy Cashier, Registered Nurse, Retail Clerk and Robotics Technician. JobsNow.org powered by INCIGHT - www.jobsnow.org For more than a decade, INCIGHT has hosted many successful local job fairs that average 300 candidates in attendance. Job fairs have been hosted in the Portland metro area and in recent years, turnout has reached 500 or more. According to their website, over 2000 job seekers were helped in 2018, 1 in 4 scheduled interviews received job offers and 81% felt more confident in their job search. Why Attend a Job Fair? • I nterview for several positions with many employers in a single day. • Meet employers from top companies and get your foot in the door. • P ut a face with your resume and receive an immediate response. • Great networking opportunities in a relaxed atmosphere. • Take control of your job search immediately. • Mass market and distinguish yourself from the rest. • Learn more about different companies and what they have to offer. Job fairs are free for job seekers to attend and attract between 20 - 40 employers throughout the Portland metro area. The next event is happening in October. We’ve included location details and answers to frequently asked questions below:
CareerOneStop - www.careeronestop.org CareerOneStop is a website sponsored by the U.S. Department of Labor, Employment and Training Administration. They provide career exploration, training and job search resources in a wide range of categories, some of which include: entrylevel worker, self-employment, young adult, laid-off worker, and workers with disabilities. They will also connect you with local American Job Centers that can help you look for work and offer job search workshops, free computer access, and more.
Helping autistic adults or people with other disabilities find employment should not be a zero-sum-game where one group of people is helped at the expense of another. Not only should each person have the opportunity to obtain meaningful employment, but waiting lists for employment services dependent on perceived levels of autism deficits end up breeding resentment and creating a competition of suffering in our community. Instead of individuals and families coming together to advocate for and support one another, they are often pitted against one another, with limited state funding dollars in play. The group who advocates loudest and/or who has the most political backing, often prevails. We believe people and society are stronger when each of us has what we need to be able to fully participate in community life. We wish you well in your employment search!
Tuesday, October 22, 2019 10:00 a.m. - 1:30 p.m. Portland State University, Smith Memorial Ballroom 1825 SW Broadway St., Portland, OR 97201 What should I bring to the event? We recommend you bring multiple copies of your resume to hand out. How should I dress? We recommend you dress professionally. Think of the job fair as if you were interviewing. You will be talking to many different companies who are looking to hire. Some companies may even want to interview you while at the event.
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 26 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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recreation
IN THIS SECTION KultureCity: Rethinking Accessibility, Promoting Inclusion............22
Photo courtesy of John Krejcha
INCLUSIVE WAYS TO HAVE FUN
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Tax-deductible donation for your car, truck, RV or boat (Running or not) • Picked up free of charge by Donate For Charity • Proceeds go to Autism Empowerment and Spectrum Life Magazine
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RECREATION
KultureCity: Rethinking Accessibility, Promoting Inclusion
By John Krejcha and Karen Krejcha On Wednesday, April 24, 2019, the Oregon Zoo had cameras rolling to reveal their launch as an officially certified KultureCity® Sensory Inclusive™ location. On hand for the reveal and to show what was contained in the Zoo’s new Sensory Bags were Zoo Director, Dr. Donald Moore; KultureCity Board Member and actor, Kelly AuCoin; Program Director and Autism Empowerment Co-Founder, John Krejcha; leaders from the Zoo and other local accessibility partners.
What are some of the challenges that families face in public places such as entertainment venues? For children or adults with sensory needs, entertainment venues which are typically large and crowded often pose challenges with noise, smells and sights. Weather and temperature can play a part. Long lines can be difficult to navigate and it is easy for a person to become anxious or overloaded. This can lead to a meltdown or shutdown and a family leaving a venue early. Families still want to be able to participate, build happy memories and have all their members included; however, visiting places like zoos, theme parks, museums and arenas without a plan for support or knowing if the venue has staff trained to understand their needs often seems overwhelming. What about “Sensory Friendly” events? Some entertainment venues do support families by offering sensory friendly hours or days. These can be quite well received and very appreciated in the right circumstances. These are usually short-time events geared toward a particular population (e.g. the autistic community).
Photo credit: Patty Unfred/Oregon Zoo
The KultureCity® Sensory Inclusive™ program allows individuals with autism and other sensory needs the ability to see and experience all the things the world has to offer. It caters to everyone with sensory needs, including military veterans with PTSD, adults with dementia and Parkinson’s disease to name a few. When asked his thoughts on inclusivity, Kelly AuCoin responded, “For me, sensory inclusivity is a social justice issue. These are invisible disabilities that are too easily unrecognized or ignored by our society. You are standing up for people’s civil rights when you stand up for inclusivity.” So, what is KultureCity? Who makes up KultureCity? KultureCity is a nonprofit organization located in Birmingham, Alabama, founded in 2013 by married couple, Dr. Julian Maha and Dr. Michele Kong in order to create and promote acceptance and inclusion for all individuals with unique abilities. Inspired by wanting their autistic son to live to his highest potential, the KultureCity website shares that it owes its birthright not to any one person, or any few, but to the many thousands of people who make up the KultureCity family – families who have worked tirelessly for acceptance and a better future for their children with autism.
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They generally do not require staff members to have specialized disability or sensory-related training. Also, the definition of “sensory friendly” tends to vary from event to event. Sometimes it means only a few people will be in attendance. Sometimes it means that the attendees are “friendly” toward each other’s sensory needs because they are in similar circumstances. There is no universal definition that any one nonprofit, group or business uses. KultureCity’s Sensory Inclusive training program and certification helps solve for that! • Sensory Inclusive ensures daily accessibility not limited by time and location thus creating an accepting and inclusive community. • It caters to everyone with sensory needs. • It is also easy to execute with staff training, and simple yet impactful modifications to the location. • It augments the fan experience. What does the certification process entail? The certification process includes staff training led by medical professionals on how to recognize individuals Continued on next page
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KultureCity: Rethinking Accessibility, Promoting Inclusion, continued from page 22
with sensory needs and how to handle a sensory overload situation. At least 50% of employees working at a venue must be trained in order for that venue to be certified, however according to KultureCity, most venues reach 100% employees trained. KultureCity has trained professionals who have executed this program for over 350 venues in four countries. Once a venue becomes trained, they then can obtain sensory bags and weighted lap pads, work on helping to develop a social story for their location and then launch! In addition, facility signs will indicate noisier spaces as “Headphone Zones.” Staff will also be able to direct guests to quieter or less stimulating areas in facilities or at events. What is in the Sensory Bag? Sensory bags are equipped with noise-canceling headphones, fidget tools and verbal cue cards. Weighted lap pads are optional depending on the type of venue. There is also a VIP lanyard that can optionally be worn by the guest to help identify to staff that they are participating in the inclusion program. Individual locations may choose to add additional items such as sunglasses. Prior to attending an event, families can also download the free KultureCity app where one can view what sensory features are available and where they can access them. The app also includes the social story, which will provide a preview of what to expect while enjoying their event. Success story at the Rose Quarter: Sensory Bag The first venue to become a Sensory Inclusive™ destination within the Portland metro area was the Rose Quarter (which contains both the Moda Center and Veterans Memorial Coliseum). The Sullivan family of Vancouver, Washington were happy to learn it was a Sensory Inclusive™ destination during a concert this past spring. Nick Sullivan, an autistic 19-year-old musician and his mom, Kari Sullivan were lucky enough to receive tickets to
see Michael Buble’ on April 5, 2019. Kari shares, “Nick and I were given these tickets last minute by a very generous friend who was unable to use them. I didn’t have much time to prepare him for the concert as I usually would. However, I thought he would really enjoy the show so I decided to cross my fingers and hope for the best.” The Sullivan family had heard about the KultureCity sensory bags from a friend prior to arriving and thought the process to check out a bag was very easy. “The staff at Moda Center were extremely helpful and friendly. They were very excited to be able to offer us a sensory bag and made sure our needs were met. They seemed very proud to be offering this service to us. We went to the Customer Service booth to check out a bag as soon as we entered Moda Center. I just had to leave my driver’s license to check out the bag. We returned the bag to Customer Service after the show. The whole process was very smooth.” Kari added, “We had brought our own ear plugs, as I know that Nick is sensitive to the loudness of arena concerts. Nick used the headphones and they were very beneficial to Nick’s experience. Nick really liked the weighted lap pad and also the fidgets included in the bag. I really appreciated the communication card with items in the bag on one side and emotions on the other side. It was a great way to check in with Nick during the show.” Success story at the Oregon Zoo: Staff Training Karen Houston of Gresham, Oregon is one of many parents who has recently benefited from the Oregon Zoo becoming a trained KultureCity Sensory Inclusive destination. She shares, “We kicked off summer break with a trip to the zoo. My son, Sam age 9 and daughter, age 11 and her best friend headed across town early on a weekday morning. I was prematurely congratulating myself on the drive there for my cleverness in picking a day when the zoo wouldn’t be as busy since many schools were still in session.” “As we pulled into the parking area I could see a very full parking lot and school buses lining the inner road with children on field trips. My son has tremendous anxiety on any sort of transportation that isn’t a car, so the shuttle bus wasn’t an option. We eventually found a parking space and walked to the entrance. The lines were not too bad and I thought it would be okay. I could tell my son’s anxiety was rising, but it wasn’t at the critical mass point and I thought we would at least try.” “Sam wasn’t moving very quickly and I didn’t want to rush him, so I let the girls go ahead and we made a plan to meet at the outdoor elephant viewing area. Sam and I never made it. When we reached the area near the train station, the crowds were intense. Sam fell to the ground screaming, huge tears running down his cheeks. His iPad with his communication app went flying and the case made a sickening cracking sound. His behavior told me what he could not communicate in any other way: this is too Continued on next page www.spectrumlife.org
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KultureCity: Rethinking Accessibility, Promoting Inclusion, continued from page 23 overwhelming for me. I want to go home. I tried to pick Sam up, but he went to a position of dead weight. Cold fear washed over me as I realized that for the first time in his life I couldn’t simply just pick him up and move him physically during one of these rare, epic meltdowns.” “I usually avoid looking at other people when Sam is having behavior in public, but I quickly realized that I needed help. I had no way to reach my daughter and I couldn’t move my son. I didn’t have a Plan B. Rookie mistake and I was kicking myself hard.” “Most people avoided my eyes. Some glanced at Sam and then moved quickly away from the ear piercing meltdown. Finally, after five minutes that felt like five hours a woman came up and touched me gently on the shoulder. She asked if I needed help. And I really, really did. She immediately went and located a zoo volunteer who came over quickly to help. The volunteer was amazingly kind and calm. She called a staff person and stayed with us until the staff person arrived.”
• Providence Park (home of the Portland Timbers) • Hult Center for the Performing Arts • Northwest Trek Wildlife Park • Point Defiance Zoo and Aquarium As new Sensory Inclusive destinations become available, more families can be more fully included in area events. In the meantime, KultureCity is working hard with community partners to help create a future where sensory inclusion is a standard. Other programs included on their website: • Toys AUcross America - A program to send toys to autists across the USA to encourage community. • t ablet:KULTURE: Communication can be a barrier to accessibility. We equip autists with tablet computers to help bridge that barrier.
“I knew we were going to get through this experience when the staff person walked up to us, smiling kindly, KultureCity sensory bag in hand. She spoke directly to my son, which most people do not bother to do. She asked him if he would like to go somewhere quieter. He gazed directly into her eyes and got much quieter. He really wanted to leave and go to the car, but that wasn’t an option until we had the other two in our party. She directed us to a quiet room that was not being used near an exit.”
• l ifeBOKS: A free kit provided to autistic children to prevent wandering and wandering related accidents.
“Sam immediately calmed down. Luckily, my daughter and her friend are two of the most responsible and mature 11-year-olds I have ever met and they were right where they said they would be. The volunteer found them and brought them to us. The staff person then let us exit without having to walk all the way back up to the entrance, which would have sent us right back into meltdown mode. She even walked us to our car. Truly, she is an amazing human.”
www.kulturecity.org/sensory-inclusive-app
“I don’t know what we would have done had it not been for the volunteer and staff person. As the parent of a child that experiences a lot of behavior hand-in-hand with their disability, these incidents can be isolating and make you never want to leave your house again. I am so thankful that the Oregon Zoo provides training to their staff and volunteers about serving individuals with disabilities, and especially the hidden disabilities like my son experiences: autism, anxiety and sensory sensitivities.” Currently the Oregon Zoo has 100% of their employees who have completed specialized KultureCity training. The Zoo also has 36 sensory bags, some of which are reserved for school field trips and summer camps, with the majority available for the public to use. Certified Sensory Inclusive venues in Oregon and Washington currently include: • Oregon Zoo • Rose Quarter (including Moda Center and Veterans Memorial Coliseum)
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To learn more about KultureCity, visit: www.kulturecity.org. To download the KultureCity app on iOS or Android for resources, help, and finding Sensory Inclusive™ locations while you’re traveling, visit:
John “The Manimal” 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 his family who is not on the autism spectrum, he is also neurodiverse.
Karen “Tigress” 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 26 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 Think Before Firing Off ...................................................................... 28 Working as an Autistic Para............................................................. 30 The Three Ps: Private Schools, Placement, and Payment ........ 32
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EDUCATION
Think Before Firing Off Words have power. Use them wisely. By Aaron Blackwelder Most parents have been there. Our children come home from school devastated by something that took place at school. Our first inclination is to become judge, jury, and executioner and destroy whoever it is that is responsible for our child’s demise. And in an era where we can ensure swift justice, all we have to do is jump on our computer, open an email, and write a few words that put that person in their place. Yes. I know I’ve done this. However, this aggressive behavior almost always does more damage than good. Recently, a friend of mine had a similar experience. His son came home from school complaining that just two days before, he was assigned a major project over spring break due the returning Monday. The friend took to Twitter to begin his assault: Just arrived home to find out that Son’s HS science teacher assigned a project over spring break. WTH? Trying to channel my rage before instructing Son on how to tell his teacher to stick that project up where the sun does not shine. Zero to beyond pissed in <2s. In a tongue in cheek way, I responded with the following: Maybe you could schedule a meeting with the teacher during spring break? I’m sure this teacher is willing to work outside school hours. However, upon reflection, I suggested he write an email asking the teacher to help him better understand the assignment — to come at it as though he believes his son but wants to confirm. I told him to focus on asking questions rather than make accusations. Tell the teacher what your son is saying and follow it up with, “Is this true?” He wrote the following draft and shared it with me before he sent it to the teacher: Dear Mrs. C, It is my understanding that you assigned a project this past Friday 4/12, to be completed over Spring Break, and due upon the return of students on Monday 4/22. As teachers, it is our prerogative to assign work and guide learning during the school day. As a parent, it is my prerogative to do as I see fit with my family during our vacation time. As such, neither of my children will be completing any schoolwork during the scheduled Spring Break Vacation.
My son will start his work for you beginning upon the resumption of scheduled school and the end of vacation, on Monday 4/22. Thank you in advance for your understanding. Sincerely, CB I told him that I felt the email sounded snarky and confrontational rather than seeking understanding. I suggested the following: Dear Mrs. C, It is my understanding that you assigned a project this past Friday 4/12, to be completed over Spring Break, and due upon the return of students on Monday 4/22. As a fellow teacher, I see learning as valuable and believe wholeheartedly that we use our classroom time to maximize learning to its utmost. However, as a parent I value our family time and spring break is an opportunity for us to maximize time together. This is time my boys will remember when they are grown that will make a lasting impression on their lives. I am hoping you can help me to understand why this project was assigned. I believe your intentions were good. However, this decision is causing undue stress because it will take away from plans we’ve had now for quite some time. Thank you for your investment in our children. I appreciate you and your consideration. Sincerely, CB He took my version of the email and sent it to his son’s teacher. When I asked him how the email was received he said that the teacher explained that she and her colleagues decided that the assignment needed to be completed over break due to state testing looming on the horizon. The teacher also said that she assigned the project just prior to break in order for kids to bang it out before the break. My friend admitted to me that his son was kind of disorganized and shared, “According to his teacher, he would have had the opportunity to complete the assignment Thursday night before break as it was supposed to take 30 minutes. Thank you so much for your help. I was pretty hot under the collar for a while.”
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Next time you have a situation where you feel your child is being mistreated by his or her teacher take the following steps: 1. Write an angry email, BUT DON’T SEND IT. Sleep on it and then read it asking if the email is focused on developing understanding or attacking. 2. Have someone you trust read the email prior to sending it off. Ask them if they feel the email is productive or too harsh. 3. Give yourself at least 24 hours to settle down before sending an email. Quite often our emotions get the best (or worst) of us and setting it aside and coming back to it later can give us a new perspective. 4. Ask yourself, “How would I feel if I received this email?” Would we want to get something like this in our inbox? 5. Delete the email and make a phone call or do a pop-in before or after school. Quite often emails lose their intent and can be misconstrued. A conversation allows us to hear the other person’s voice which reminds us that we are communicating with an actual person. It is hard to bring down the hammer of justice when we look at that person in the eye.
It is important to be assertive and respectful. Don’t beat around the bush. Be honest. But be honest in a way that works towards a solution rather than rants or points fingers. Teachers are not always the experts on all diagnoses and most of them aren’t fully prepared to teach ALL disabilities. As a parent, part of your job is to help train the teacher. Let him or her know what works for your child and what can be a trigger. I want to trust that your child’s teacher is interested in the welfare of every child in the class. As a teacher, I have made my mistakes and have appreciated when others bring them to my attention but do so in a way that honors me as a person. Teachers are constantly in front of the firing squad. We constantly hear about “failing schools” and the need to raise standards. To be attacked by a parent can make the teacher feel unsupported and afraid for their job. If a teacher is not following the IEP it is important to hold them accountable to it. However, I would encourage parents and caregivers to do so respectfully and with a cool head. Better yet, start the year with a positive email introducing yourself and your child, his or her disability, what works well and what does not. Open the dialogue with the teacher with a positive note. Starting off on a positive will make it easier when working to problem solve later. Supporting teachers does not mean that we completely submit to them. It means that we open dialogue with them and work with them to better support our children’s growth. Most teachers want this kind of open dialogue, so feel free to contact your child’s teacher when you have questions or concerns. They will appreciate it and, ultimately, this will help ensure a more positive experience for your child.
Aaron Blackwelder is a high school English teacher at Woodland High School in Woodland, WA. He was recently 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
It is easy to attack someone when we feel infringed upon. But more frequently than not, we usually have a limited understanding of what the other person is intending. It is so important to take a moment and believe that the other person is doing what he or she feels comes out of their best intentions. Asking questions and assuming they have our children’s best interest in mind creates common ground for the discussion to build upon.
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EDUCATION
Working as an Autistic Para Insight inside the Classroom By Lindy Treece I’ve been gaining experience working with youth as a paraprofessional, or “para” for short. In other parts of the country, we are called teacher assistants, paraeducators, and classroom aides. First I was a volunteer in a middle school club that practiced flexible, social thinking. I was happy to step up when one of the staff members took an unexpected leave of absence. Because I exemplified positive characteristics in my volunteer position, I was able to live out the autistic dream of bypassing the interview. Now that we’re heading into autumn and back to school, I found it appropriate to reflect upon my experience so far as a para. A para is someone who assists the teacher with classroom instruction and administrative tasks. Paras do just about everything. Metaphorically, I got to wear many hats. Success at the job depended on my ability to constantly be on my feet and available to go wherever I was most needed. Because of this, I seldom had a set schedule. The students would ask me what we were doing today and I would be just as surprised as they were. In a way, it made the process of completing assignments with students more authentic because I didn’t know the answers ahead of time. I didn’t get to work directly with students every day. Sometimes I had to do more monotonous tasks like filing and copying. The copier was a steep learning curve I mastered with many embarrassing trips to the office for help resetting it. It helped to come to work every day with the mindset that my tasks, no matter how menial, were essential to supporting and streamlining education. With growing class sizes, it can be helpful to have a para in the classroom to provide more support and monitor all the happenings. The largest class size I saw in my time was 37 students. I split types of paras into three groups: classroom, shared, and 1-on-1. Some classrooms (usually in special education) have paras who stay with the same teacher all day. Students in these classrooms will see less distinction between their teachers and paras. Other paras share their time with several students. They go to different classrooms across the building and different grade levels. Then there are the 1-on-1 paras who work with one student throughout the day. The 1-on-1 paras may specifically assist students with health or mobility impairments. Being a 1-on-1 para can be tricky. Students, especially teens and tweens, overwhelmingly desire to fit in. Having an adult follow you to every class definitely draws attention. Long ago, I was
one of those image-conscious tweens who thought my para was uncool. After completing my coursework in disability studies, I learned that her presence allowed me to be in a mainstream classroom as part of my Least Restrictive Environment (LRE) under the Individuals with Disabilities Education Act (IDEA). My para monitored my behavior for signs of stress and anxiety, stepping in to offer breaks or alternate solutions while the teacher was helping other students. Without that, I would have been considered disruptive to other kids’ learning and segregated away from my peers. Paras today allow many students in special education to integrate with their peers. Qualifications vary widely based on region and demand. Educational requirements range from a high school diploma to an Associate’s degree. Some states require applicants apply for certification in addition to or in place of a two year degree. A competitive applicant will also have experience working with youth, be a great problem-solver, fantastic communicator, and flexible in routine.
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Working as an Autistic Para, continued from page 30 While paras do work with students on assignments, most curriculum training is designed for teachers. There is no special on-the-job training to become a para, but The Seattle Times reports that Washington state will implement a new mandatory training course for instructional paras beginning in the fall of 2019. The state has also piloted plans for paras to have an easier path to pursuing teaching certification. Now for the controversial part: salary. According to the Bureau of Labor Statistics, the median pay for a para in 2018 was $26,970 per year. Pay is dependent on qualifications and time worked in the school district. With my Bachelor’s degree, I got paid a bit more than minimum wage, but not a whole lot. There is also the insecurity of education funding in America. Many schools in our area are now running a budget deficit. While paras do a lot of the same work as teachers, they do not have teaching certification and may be viewed as less valuable by administrators when it’s time to cut positions. Ideally, a school should make parents aware of everyone in the classroom providing instruction. Some schools have an “About” page on the classroom website where the para is included, but many schools still only provide contact information on a list where it is not clear with which teacher the para is affiliated. If your child has a 1-on-1 para then the process of being introduced to the para is fairly straightforward. If there’s a para who is frequently in the classroom, talk to your child’s teacher for an introduction. However, when sending emails to a para, be sure to include the teacher in the “CC” field. We work best when we work together! I don’t make a big show of being autistic at work. For one, my last job taught me that some workplaces aren’t very friendly toward the neurodiverse. I try to reflect my autism in my passion for the work I do, not in words or “look at me, I’m autistic” behavior. I only bring it up if somebody asks or if we’re talking about it.
So far, I’ve only received positive feedback from students when I tell them I have autism. It gives me hope that this generation of students is more accepting than mine was. I spoke with one student who was in the process of getting a diagnosis. We talked about how social interactions are like walking into a room where everyone knows the inside joke but you. An imaginary light bulb went off above his head. After that, he greeted me by name every time I stopped by. Another student remarked how hard it was to have a disability, and I said “same” just by instinct. It was something I said without thinking, but her interest piqued and I was open to questions. Mostly the kids were curious because they don’t usually meet autistic adults in the school setting. Some may have never met an autistic adult. My experience at the schools has taught me that I still know very little about autism. Sometimes teachers say I have more insight into the autistic brain, but I see all the things I have yet to learn. I am wise enough to know that I can’t build a career of helping people affected by ASD if I solely rely on my own experience. I met students with autism, learning disabilities, ADHD, mobility impairments, health conditions, anxiety, and depression (to name a few) in every combination imaginable. It was weird to work in a school setting, but it was a good kind of weird. It was a reminder that I was stronger than all the bad memories I had of K-12. I learned firsthand the important role paras have in our school system. I’m hoping to further my knowledge by working, volunteering, and attending graduate school. References: Morton, N. (2019, July 28) ‘Basically I’m their teacher’: Washington has big plans for its 25,500 school paraeducators. The Seattle Times, bit.ly/waparaeducators Bureau of Labor Statistics, U.S. Department of Labor, Occupational Outlook Handbook, Teacher Assistants. bit.ly/blsoccupationaloutlook
Sample schedule:
8:30am: Arrive at work. Talk with teachers to find out what we’re working on in class. 9:00am: Go through the daily agenda with students. 9:07am: Put up and take down gym equipment. Encourage participation. 10:30am: Assist one student with transitioning and starting tasks. Scribe notes as needed. 11:50am: Lunch. 12:20pm: Walk students through math problems. Grade in-class worksheet with teacher. 1:45pm: Make 30 copies of three different worksheets. Double sided. 3:10pm: Track down students with missing assignments.
Lindy Treece is an autistic activist based in SW Washington. She is pursuing a Master’s degree in Social Work in hopes of becoming a resource for people on the spectrum. Her special interests include cats, geography, and writing for her website lindytreece.com. www.spectrumlife.org
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EDUCATION
The Three P’s: Private Schools, Placement, and Payment
By Diane Wiscarson and Taylar Vajda It is very frustrating to watch your child struggle in school. It is likely even more frustrating if your child has learning differences, and more struggles than a typical child. The last straw may well be when a parent comes to the realization that their child’s neighborhood school simply is not the best placement for their child. What’s a parent to do in this case? Sometimes, the answer is a private school. What does the school district need to provide? School districts are required to provide all students with disabilities a free appropriate public education (FAPE) in the least restrictive environment. “Appropriate” does not mean “the best.” To be appropriate, the district must put supports and services in place for each student to meet the individual needs of that particular student. When done, then adjusted and monitored appropriately, the student should be able to make meaningful progress on their educational goals. Districts conduct a comprehensive evaluation of your child to identify the needs. The information gathered during the evaluation process are the building blocks of the Individualized Education Program (IEP). The IEP outlines what FAPE is for a particular child. When does a district have to pay for private school? Districts are given the first opportunity to deliver FAPE to your child. If the IEP team meets and decides the district is unable to provide FAPE in the neighborhood school, the district may be required to place the student elsewhere to provide FAPE - a different program, a different school within the district, a special school, or even a private school. However, districts do not generally just volunteer to pay for private placements. Instead, the responsibility to advocate for private placement falls on parents and guardians and must be done with proper notice, and strategically. What if the parent chooses to place a student in private school? Although parents may have good reason to believe that their child’s school district isn’t providing FAPE, that belief by itself is not enough to get a district to pay for a private school. Parents cannot simply enroll their child in a private school and expect the district to pay for or reimburse the parents for that expense. If a parent thinks their child is not receiving FAPE at the district school, the parent should first try to resolve concerns directly with the district. This can be done by documenting all concerns to the district and calling an IEP meeting to discuss those concerns. Suggesting a different school within the district can be a good first step. If you know of a suitable private school for your child, you can suggest the private school to the district at the same meeting. Private school placement by the district, or reimbursement to the parents, is only possible if there is no
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in-district placement available or pursued that could provide the child with FAPE. Parents who remove their child from public school need to follow certain steps for the best chance of getting reimbursed by the district for private school costs. At the meeting when private school placement is discussed, parents should show up ready to present current information about what needs are not being met and information about how the alternative placement can meet those needs. Then, parents must inform the district at the IEP meeting that the current placement option is rejected; they are dissatisfied with the IEP; and they intend to enroll their child in a private school at public expense. If the parents are unable to give this notice to the district at an IEP meeting, then, at least 10 days prior to removing the child from public school, parents must give written notice of this information. This is referred to as a “10-day letter.” By itself, the “10-day letter” is not enough to guarantee reimbursement for private school from the district. In addition to evaluating whether FAPE was delivered, courts look at whether a parent acted reasonably in placing a child in a private school. To increase the chances of reimbursement, it is important that the district be given a reasonable opportunity to fix any issues that interfere with the delivery of FAPE. This means that parents should cooperate with the rest of the IEP team and allow the district to further evaluate the child, presuming the evaluations are reasonable. Once it is clear the district is unable to deliver FAPE to a child, parents have a few different options for seeking reimbursement, such as filing a complaint with the school district, requesting mediation with the district, filing a state complaint with the state educational agency, or filing a due process complaint. These options vary greatly in time, money, and available outcomes. A lawyer can help parents sort out what might be the best option. What else should parents consider? Not all students with special needs can receive a private school placement paid by the district. It’s dependent on the unique needs of each individual student. Unless the district voluntarily agrees to place a student in private school, the parents will need to prove that their child was not receiving FAPE at the public school and the private placement is appropriate for the child. This requires a hearing, which likely means you need a lawyer, and operates just about like trials that you could see on a courtroom television show.
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The Three P’s, continued from page 32
Parents should also know that, while private placements can be great for some kids, private schools do not have to follow IEPs. Only public schools are required to provide FAPE and utilize IEPs. This is something to think about if your child is served well through an IEP or has significant medical needs. Some kids can be better served through the resources public schools must provide. It is important to weigh these factors when deciding whether to remain in the district’s current placement or move to a different program, public school, or private school.
Summary Getting a district to pay for private school can be a long and daunting process. However, following the steps outlined above will hopefully achieve one of two goals. Either parents will work through the problems with the district to provide an appropriate education through the district, or parents will set themselves up for the best chance to receive reimbursement for private school costs. The outcome depends on the needs of the individual child, the facts of each situation, and the somewhat unpredictable reasoning of the judge assigned to your case.
Diane Wiscarson is founding attorney and Taylar Vajda is a law clerk with Wiscarson Law, the only firm in Oregon with a primary practice area of special education law for families. Since Diane Wiscarson founded the firm 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.
Headshot photo credits: Wendy Mayo www.spectrumlife.org
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health & wellness
IN THIS SECTION Skyhook Ninja Fitness ......................................................................36 Setting the Healthy Example .........................................................38
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HEALTH + WELLNESS
Skyhook Ninja Fitness Neurodiverse ninja warriors welcome! By John Krejcha In March 2019, Brian Burk (aka “The Burkinator”), a 19-year-old autistic engineering student from Colorado smashed the course of NBC’s “American Ninja Warrior” at the Los Angeles qualifiers. In the episode that aired in May 2019, the joy and determination that Brian showed had the crowd cheering him on all the way to the top of the final obstacle, “The Wall.” Brian was not the first autistic teenager to compete in the grueling sport and will not be the last. The great news is that neurodiverse youth and families in the Portland metro area looking to increase their fitness now have a local ninjathemed gym in which to train. Spectrum Life Magazine recently caught up with Jamie Buck, General Manager at Skyhook Ninja Fitness to learn about their gym and their innovative training program, “Neuro Diverse.” Tell us about Skyhook Ninja Fitness. Skyhook, in short, is a ninja warrior style gym. We primarily cater to children, teens, and families. We are a gym that is focused around community, acceptance and surrounding good people with good people. Skyhook Ninja Fitness’ mission is to “Build a community dedicated to physical and emotional growth through fun, functional fitness.” Skyhook brings high quality and professional American Ninja Warrior training to Portland and the surrounding areas. Skyhook aims to be known as the place to go for fitness, community and fun. Skyhook started out as a home-based gym and by popular demand has developed into the largest ninja obstacle gym in Oregon. We started back in 2017. The gym also has an office for psychological treatment. Do you or any of your staff have a personal connection to someone on the autism spectrum or with special health needs? Although I can’t speak for all of our employees, I know that some of us do. Two of the gym’s owners are psychologists and have decades of experience helping children with varying degrees of special health needs. I personally have a good friend named Garrett C. with autism who I had the pleasure of growing up with. I was part of a volunteer group in elementary school that tutored students, and Garrett was my partner. After working closely together, we found that we had a lot of common interests (Super Mario, funny movies, pizza, etc.) and ended up becoming close friends.
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We also have an employee named Mitchell Burris who is autistic. Although technically our relationship would qualify as professional, I am pleased that he gets to help teach our neurodiverse class and I enjoy his energy in the gym. We heard that Skyhook Ninja Fitness offers a specialized class called “Neuro Diverse” that supports teenagers with gross motor differences and low muscle tone. These characteristics are often found in youth on the autism spectrum. How did this program come to be? Dr. Lynn Knope (one of our owners) is always looking for ways to promote mental health programs in our gym. We have tried numerous programs, but this is the first one where we were able to get some real traction. I actually need to thank one of our members for getting this program running. Belinda Hanson (a local autism advocate) has been an absolute powerhouse in getting our vision into the neurodiverse community. With her help and a few trial runs, we were able to start a real recurring program. What inspired you to create this program that serves the autism community as well as those with other disabilities? Dr. Knope and Belinda Hanson wanted to provide an activity for older kids on the spectrum. From what we found there was/is minimal representation in the surrounding area and we wanted to change that. What can a class participant expect to do during these classes? They do everything we do in our regular classes: ninja obstacle skills, parkour, gymnastics, rock climbing, and general strength/ fitness training. If you have ever watched an episode of “American Ninja Warrior”, you can get a strong idea of what to expect. Parents can sit back and watch or if they want to be in the space and help their child succeed, they are welcome either way. Oscar Knoll is our lead coach for our Neuro Diverse Program. What age group does this program serve and when does it meet? This program serves boys and girls between ages 10 through 16. We currently meet on Sundays from 6:30 - 8:00 p.m. What is the cost? Neuro Diverse membership is currently $200.00 per month. If you (Spectrum Life Magazine readers) are interested, we would love to have you come by and try out a complimentary class! Continued on next page
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Skyhook Ninja Fitness, continued from page 36 Are there future plans to expand the program? Absolutely! The primary goal of the program is to move kids from our neurodiverse program into our general classes. Obviously, some kids will progress at different rates, but we would love to make this program as big as possible. What else is important for Spectrum Life Magazine readers to know? We are absolutely blown away by what some of our amazing kids can do! Please come and check us out! That sounds great! Where are you located and how can people contact you? You may stop in and visit, email or call for more information: Skyhook Ninja Fitness Training Center 12008 SW Garden Place, Tigard, OR 97223 infostaff@skyhookfitness.com - (503) 352-9608 You can also learn more about Skyhook Ninja Fitness at our website: www.skyhookfitness.com We also invite you to follow us on Facebook at: www.facebook.com/SkyhookNinjaFitness Reference: Brian Burk: Los Angeles America Ninja Warrior Qualifiers 2019 video clip (2019, May 31) NBC - bit.ly/brianburkinator2019
Photo courtesy of Skyhook Ninja Fitness
John â&#x20AC;&#x153;GRASSHOPPERâ&#x20AC;? 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 his family who is not on the autism spectrum, he is also neurodiverse.
Photo courtesy of Skyhook Ninja Fitness
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HEALTH + WELLNESS
Setting the Healthy Example Our Children Are Watching By Ryan Lockard, CSCS, CSPS When I first started Specialty Athletic Training, I had no idea the struggle with weight that our youth are having. Sure, we have several clients that come to us wanting to work on their coordination, strength, and endurance. But most parents bring their children to work with us to help with weight management. There are several factors that typically play into the spike in weight gain (eating habits, trouble sleeping, new medications, etc.) but there is almost a common underlying theme. Their child doesn’t enjoy being physically active. Physical activity is essential to growth and development in children and adolescents. The global health recommendations state that this population should accumulate 60 minutes of moderate to vigorous exercise a day, however they are currently living a less active lifestyle than in the past. The level of inactivity has been coined by Dr. Steven Blair as “the biggest health problem of the 21st century”. Fewer children are walking or biking to school, there is less unstructured free play, and physical education classes are prime targets during budget cuts. So, what can we do to change this? Set the example and instill healthy habits in our youth. The American adult population is currently setting a terrible example for our youth, so the numbers of their inactivity shouldn’t be a surprise. Our country is battling an obesity epidemic with nearly 40% of the adult population being considered obese which affects 13.7 million of American children. Physical activity is one of the best ways to combat obesity, yet according to the Centers for Disease Control and Prevention (CDC), only 23% of American adults are currently meeting the recommended physical activity guideline of at least 150 minutes of moderate exercise a week. We need to work on whole family lifestyle changes and place an increased focus on children’s activity level in order to reverse the upward trend of adult obesity. But what does that look like and how do we get our children active? I’m so glad that you asked! First, exercise needs to be FUN. It shouldn’t be something that children dread, but rather something that they look forward to doing. Many of our clients have a negative association with exercise and have low self-confidence with their body’s ability. Fitness professionals need to keep this in mind as they create their fitness program for their youth clients.
are typically cardio-focused, but they excel when being introduced to resistance training. They can see and feel their improvements over time, which increases their self-confidence and self-esteem. The correct exercises will also work on their fine and gross motor skill movements, which often attribute to their challenges of fitness-related activities. Humans (not just children) shy away from things that they are not good at. Failure is seen as negative rather than a positive. Parents need to encourage failure as it is the best learning tool. Let me explain. Many parents will say to me that their child runs awkwardly. When asked how often their child runs, the common answer is, “They don’t because of their awkward running motion.” But how will they ever get better at something if they don’t practice? As parents, we need to reinforce our children’s effort, rather than the outcome, especially when they are working on a new challenge. Practicing new skills in a safe and encouraging environment is the best way to fail, which means it’s the best way to learn. Children are little sponges that replicate what they see and hear. We often find ourselves as parents asking, “Where did they hear that word?”, only to remember a time that we may have let it slip. Sound familiar? Actions are no different. We need to be better at living a healthier lifestyle ourselves and being the proper models for our children. Why should we expect our children not to want sweets when they see us indulging our sweet tooth? Why should we expect them to want to go play outside instead of watching TV, when they see us binge-watching Netflix after work? The best way to change our children’s habits is by changing our own. Include your children in your own fitness journey and show them how important exercise is to you. Are you going to be perfect? Nope. Will you have setbacks? Yep. And that is ok! Our children need to see that too and the way that you get back on track. Remember that they are always watching. Provide the positive health example that they need. Reference: Blair, SN: Physical inactivity: the biggest public health problem of the 21st century. British Journal of Sports Medicine 2009; 43:1-2.
Children that are overweight or obese will often shy away from traditional youth-based exercise routines because they Ryan Lockard is the founder and head trainer of Specialty Athletic Training, a personal training company located in the Portland Metro area and Central Oregon, that specializes in fitness programs for children and adults with special needs. He is a Certified Strength and Conditioning Specialist (NCSA) and Certified Special Populations Specialist (NSCA). He can be reached at Ryan@SpecialtyAthleticTraining.com or www.SpecialtyAthleticTraining.com. Photo courtesy of Mary Rebekah Moore
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therapy
IN THIS SECTION Making Friends at Camp Yakety Yak...................................................... 41 Spectrum Life Resource Directory............................................................44 Upcoming Autism Empowerment Events.............................................46
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Photos courtesy of George Padilla
THERAPEUTIC OPTIONS AND RESOURCES
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THERAPY
Making Friends at From SocialSibs to Playmakers By Amy L. Donaldson, Erica Veach, Megan Wilder, and Angela Sullivan Camp Yakety Yak (CYY) is a five-week day camp for neurodivergent and neurotypical children, as well as children with disabilities with the goal of promoting opportunities for social interaction and creating an environment for authentic relationship development. Campers receive facilitation at many levels including professional supports (speech-language pathology, occupational therapy, special and general education, counseling, nursing professionals), clinical trainee supports (graduate practicum students), volunteer supports (college and high school students), and peer supports (fellow campers). These multiple layers of scaffolding, as well as activities geared towards motivation and interests, set the stage for opportunities to engage and interact with peers in meaningful ways to form friendships. Angela Sullivan, a speech-language pathologist with many years of experience providing services to children in schools, first started CYY in 2010 in response to the lack of summer activities available to her child with Attention Deficit Hyperactivity Disorder (ADHD). Since that first small group of children and volunteers joined together in the backyard, CYY has grown to annually provide over 130 children in the greater Portland area a hands-on summer camp experience that offers a rotation of activities, games, cooking, sports, technology, and friendship. In addition, CYY offers work experience opportunities to young adults with disabilities through the camp’s Yak Apprenticeship program. The program provides paid, supervised on-the-job training to young adults ages 16-21 in various areas of the camp: kitchen, facilities, technology support, team leadership, education assistant, office, photo/video, and recreation. SocialSibs It is within this context that students and faculty from Portland State University’s (PSU) Autism and Social Communication (ASC) Lab implemented an extension of a social communication intervention, SocialSibs – a model that uses two evidence-based methods to facilitate social interaction between children on the autism spectrum and their neurotypical siblings (Donaldson, 2015). The methods include Video Modeling (VM) and Sibling or Peer Mediation (PM). (Of note: as CYY includes both siblings and peers, the model was known as Playmakers rather than SocialSibs at CYY to be inclusive of all children).
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Video modeling (VM) is a method that captures a specific skill on video – in this case, a social communication skill – and allows for several examples/demonstrations of the skill with playback and discussion of the skill. This creates an opportunity to diminish the distractions that occur with real-time modeling of a skill. For example, a video model of gaining someone’s attention might show three short video clips that include: 1) a child calling another child’s name; 2) a child tapping another child on the shoulder; 3) a child getting in close proximity to the other child and saying, “Look”. Video modeling has been found effective for targeting social communication skills, play skills, and motor skills. Ideally, video models are no longer than one minute in length and show at least three different behaviors of the same goal/skill, so that children do not think there is only one way to demonstrate a skill (Cox & AFIRM Team, 2018). Peer mediation (PM) is a method of promoting social interaction between children that traditionally coaches a neurotypical child in changing their own behavior in order to facilitate the success of the interaction (Zagona & Mastergeorge, 2016). In order to maintain equity in the relationship, the peer does not teach the neurodivergent child – everyone is responsible for their own part in communication and social interaction. As such, typical goals might include: responding to a peer’s communication bids, asking questions, narrating one’s own play and gaining peer’s attention. We often teach something that we call the ‘As If’ principle. We discuss with children that peers/siblings may use unconventional gestures or spoken language that may seem unrelated to the context, but may not actually be unrelated. The peer may be unsure if their friend/ sibling is communicating with them, but we encourage them to respond ‘as if’ their peer/sibling is communicating with them. This gives the peer an opportunity to start an interaction upon which to build ongoing social engagement. Playmakers Implementation Playmakers (a.k.a. SocialSibs) was successfully introduced and implemented on a small scale during the 2019 CYY camp season. Thus, Ms. Sullivan and Amy Donaldson, Director of the ASC Lab and developer of the SocialSibs model decided to provide it to all campers and train all staff for CYY 2019. Staff Training: All staff received bi-weekly trainings with Donaldson. Trainings included instruction on the main methods of the intervention (VM and PM), as well as the core principles and elements of social communication, such as intentionality, reciprocity, social cognition, and facilitation of social interaction between children. Continued on next page www.spectrumlife.org
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Making Friends at Camp Yakety Yak, continued from page 41 Given the varied backgrounds and education levels of the staff, as well as the different tasks for each group, staff used break-out sessions on occasion to address particular staff training needs. During such times, specific coaching was provided to meet the needs of those staff. For example, 1:1 assistants were provided with support around how to facilitate camper to camper interactions, rather than perpetuating only camper to staff interactions. Activity teachers received specialized coaching in how to integrate the use of VMs within their activities, generating a productive discussion regarding barriers to use in some settings. (Of note: all camper teams and activity teachers had each VM preloaded on an iPad at their station available to them at all times). Playmakers staff were also onsite and available for consultation and coaching at all times throughout camp. Staff often approached the Playmakers station asking for support and problem-solving use of VM and PM methods within different contexts and with different camper profiles. Morning Assembly: All campers received direct instruction for both VM and PM goals. Morning Assembly was a time of daily gathering that introduced campers to their day, focused on camp themes, reminded campers of goals, and was an occasional opportunity for camper talent (e.g., singing, dancing, magic, etc.). Every morning during Assembly, Erica Veach and Megan Wilder, PSU Graduate student clinicians and the lead Playmakers staff, presented their coaching to all campers (this also served as additional indirect training to staff).
Fridays of each week, the Playmakers staff showed a compilation video of the campers demonstrating the week’s Playmaker’s goals that had been captured using photo and video by CYY staff. The campers often demonstrated a great deal of enthusiasm during this showing – the audience could be heard saying, “Hey, that’s me!” and “I did that!” with rapt attention. Playmakers at Recess: CYY offers several different choices directly following lunch as the recess portion of camp; these often include playground, arts and crafts, gym, tech, scooters, and other fun activities. Playmakers was one of the recess options. Following the philosophy that children learn best when engaged in motivating activities, our intent was to revisit the lessons of VM and PM very briefly at the start of the session and then offer opportunities for scaffolded practice within motivating activities for the remainder of recess. As such, we started the Playmakers session with a brief review of the VM at the start of the week or a discussion of the PM goal at the end of the week, followed by each camper self-selecting from a menu of at least four activities. Our activities were typically intended to promote social interaction and they typically included at least one construction type activity (e.g., marble run, Legos, gears), imaginative play (e.g., pretty pony, castle, house); art (e.g., painting, playdough); and/or competitive (e.g., Jenga, bowling). On average, between 7 to 15 campers would self-select Playmakers as a recess choice each day. Many children selected Playmakers every day for all five weeks – it was clearly a favorite. Other children selected it frequently, but also selected other recess options. Campers’ ages ranged from 6 to 14. Campers frequently moved between Playmakers activities and were always encouraged to “find a friend” when engaging in an activity. Throughout the five weeks of camp, we observed many spontaneous examples of Playmakers goals from campers: gaining attention, commenting, responding, asking questions, asking for help, narrating play, handling winning and losing, showing a friend something, and other ways of sharing ideas with friends.
On Mondays and Tuesdays of each week, VMs were shown for that week’s goals. Playmakers staff coached campers through the VM goals; they paused after each demonstration of the behavior, asking campers to identify the behavior, and discussed how campers might use the behavior during their camp day. On Wednesdays and Thursdays of each week, the PM goal was presented via staff skits. Playmakers staff would demonstrate the goal behavior in different ways and include the campers in active participation (there were always lots of hands in the air with volunteers to offer suggestions and participate). On
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Visual Supports: Visual supports were created for each VM goal, as well as for each PM goal using the CYY mascot as the lead “character” in the visual and customized to the Continued on next page
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Making Friends at Camp Yakety Yak, continued from page 42 particular goal. Large visual supports were created for each activity space and distributed to the staff leading the activity for that space. Small visual strips with the three visuals for that particular goal were attached to lanyards for each staff member (similar to those used in augmentative and alternative communication). Children were oriented to each visual and encouraged to use both expressively and receptively as they desired.
Donaldson, A. L. (2015). Pre-professional training for serving children with ASD: An apprenticeship model of supervision. Teacher Education and Special Education, 38(1), 58-70. Finke, E. H. (2016). Friendship: Operationalizing the intangible to improve friendship-based outcomes for individuals with autism spectrum disorder. American Journal of Speech-Language Pathology, 25, 654-663. Zagona, A.L., & Mastergeorge, A. M. (2016). An empirical review of peer-mediated interventions: Implications for young children with autism spectrum disorders. Focus on Autism and Other Developmental Disorders, 33(3),doi:10.1177/1088357616671295
Amy L. Donaldson, Ph.D., CCC-SLP is an Associate Professor in the Department of Speech & Hearing Sciences at Portland State University. Her research and teaching interests focus on social communication and interactions, particularly related to relationship and friendship development, perception of social competence, and disability. She is committed to participatory research and a strengths-based approach to partnering with the disability community.
Final Impressions Camp has recently ended and we’ve had an opportunity to reflect on Summer 2019 and start planning for 2020. As she was scrolling through the photographer’s work, Ms. Sullivan commented on the difference that she noticed in camp pictures this year, as compared to years past. She stated that she had given the same instructions; the charge is always to capture shots of action, shots of doing, shots of being at camp – not portraits. However, compared to years past, the pictures this year were primarily of campers with campers. Although the staff to camper ratio at CYY is amazing – nearly 1:1, the facilitation by staff to support social interaction between campers was self-evident in these candid photos. Campers were engaged with their friends. They were interacting with other campers. For our ASC team, other indicators were equally compelling. Staff, who in Week 1 were highly engaged in 1:1 interactions with campers were, by Week 5, drawing in other campers and using Playmakers strategies to boost peer relationships multiple times within a matter of minutes. Within Playmakers recess sessions, we observed campers seek out their friends prior to joining Playmakers in order to attend together. The recess sessions appeared to become a “gathering” space (Finke, 2016); a place to develop authentic relationships with others. That is our goal.
Angela Sullivan, M.S., CCC-SLP is the Founder and Director of Camp Yakety Yak and a speech-language pathologist. She has provided speech-language services in school settings for 19 years and has worked as a special education teacher in an inclusion classroom. She is a former Executive Board Member for the Oregon Speech-Language Hearing Association.
Megan Wilder is starting her final year of graduate school at Portland State University and is a first generation student. After spring term, she hopes to work as a speech-language pathologist in a rural school district specializing in AAC.
References: Cox, A., & AFIRM Team. (2018). Video Modeling. Chapel Hill, NC: National Professional Development Center on Autism Spectrum Disorders, FPG Child Development Center, University of North Carolina. Retrieved from http://afirm.fpg.unc.edu/video-modeling
Erica Veach is a second-year speech-language pathology graduate student at Portland State University. She is originally from the east coast. She decided that she wanted to be an SLP and work with children when she was 16 years old and is so excited to be at this point in her journey!
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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 print advertising, online advertising and nonprofit 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. Letâ&#x20AC;&#x2122;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 youâ&#x20AC;&#x2122;d like to see added, please contact us at spectrumlife@autismempowerment.org or through our website.
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MONTHLY Regal My Way Matinee Sensory Friendly Movie 10:30 am showtime, doors open at 10:00 am 7800 NE Fourth Plain Blvd. Vancouver, WA 98662 Call 844-462-7342 ext. 433 in advance for movie that will be showing. 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
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Autism Empowerment
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Bridges is the only middle school in Oregon specifically designed for students with learning differences to reach their maximum potential—in a loving, nurturing atmosphere centrally located in downtown Portland. Our small class settings for 5th-8th graders incorporate individualized academics with social skills, therapies, and support that set the foundation for success. At Bridges, students learn another way forward. Our goal is to give students with learning differences the academic foundation, social skills and confidence they need to graduate ready to succeed in high school and in the community.
You can find us in the heart of downtown Portland at 2510 SW First Avenue, 97201. BridgesMS.org | 503-688-2922
Admission inquiries for the 2020/2021 academic year are now being accepted at BridgesMS.org. Space is limited. Preference given to 5th grade applicants. 47
As an Independent Apartment Community (IAC), Stephenâ&#x20AC;&#x2122;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.
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and participate in activities.