FREE PORTLAND AND SW WASHINGTON’S ONLY MAGAZINE FOR THE AUTISM COMMUNITY
SpectrumLife TM
m a g a z i n e
SUMMER 2018
A LETTER FOR ALL OUR STUDENTS DOES YOUR SCHOOL OFFER PEER SUPPORT? THE WALLET CARD EMPOWERING WOMEN & GIRLS WITH AUTISM SPECTRA GYMNASTICS A SPECTRUM OF FICTIONAL CHARACTERS
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SUMMER 2018
contents
28
A Letter for All Our Students
FEATURED SECTIONS ADVOCACY
7 10
Peer Support in the School System Does your school offer this strategy? From autistic adults? The Wallet Card A tool to help teens and adults communicate with law enforcement.
EDUCATION
28 30
A Letter for All Our Students You are so much more than a name and a grade.
32
Social Goals in the School Environment Developing and measuring social goals for an IEP.
How to Get an IEP What is the Individualized Education Program process?
LIFESPAN
14 16 18
Autism and Non-Fluid Speech Paper words help us to get unstuck. Ask Spectrum Life Content curators answer frequently asked resource questions. Empowering Women & Girls with Autism Diagnosis is a tool for autistic empowerment.
HEALTH + WELLNESS
35
Spectra Gymnastics Catering to a spectrum of learners and their families.
39
Ask the Personal Trainer Ryan Lockard answers questions about Health and Wellness
therapy
Recreation
22 24
Autism and Disability in Literature Brian Tashima reports from a national writer’s convention. A Spectrum of Fictional Characters Nine novel ideas for summer conversation.
41 44 46
When the Best Therapy is Love Stories from the Spectrum: Jasmyn Jones. Spectrum Life Resource Directory is Live SpectrumLife.org helps you find autism-friendly service providers. Upcoming Autism Empowerment Events Support Groups, Social Clubs and Special Events. www.spectrumlife.org www.spectrumsmagazine.org
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FROM THE PUBLISHER
SpectrumLife TM
m a g a z i n e
SUMMER 2018 | VOLUME 7, ISSUE 2 SPECTRUM LIFE MAGAZINE TM A program of Autism Empowerment TM Karen Krejcha, Autism Empowerment, Publisher Dave Born, Graphic Designer I can feel the anticipation of school ending getting stronger each day. Every year in the month of May, my youngest son creates a summer vacation countdown calendar on the large rolling whiteboard we have in our home office. I am greeted with daily updates in big bold numbering to match an equally enthusiastic voice proclamation. “Just 19 days left of school, Mom!” The next day it’s, “Just 18 days left of school, Mom. I’m so excited! Are you looking forward to it? ARE YOU READY?”
Editorial Advisory Board: Amy Donaldson, Ph.D., CCC-SLP John Krejcha Tara O’Gorman, MSW Heather Parrott Brian Tashima
Hmm… good question. Are you ready, Spectrum Life readers? So many of you wrote in for advice that we dedicated our entire Ask Spectrum Life column this issue to providing support and suggestions for helping your family stay entertained, on routine and regulated during the summer months. Learn more on page 16 and for those hoping to keep your loved ones active, check out our Ask the Personal Trainer column on page 39. We also had lots of questions about education and IEPs so this issue features three articles in our Education section and a terrific piece in our Advocacy section by Michael John Carley addressing the need for peer support in schools. Each issue, we highlight businesses and organizations doing great work to support the autism community. This time we tumbled across Spectra Gymnastics, who offers classes and camps for youth and young adults as well as parent support. On the national stage, we have a report about the United Nations’ call for Empowering Women and Girls with Autism. Although it should be commonplace, it is not, so we give kudos for inviting an autistic woman keynote speaker and autistic women advocates for your panels! There are many other great features in this issue but one that I’d like everyone to read, A Letter For All Our Students on page 28. Although it was never written with the intent to be published in Spectrum Life Magazine, it is exactly the kind of encouragement and support that transforms lives. Oh and awesome news, our SpectrumLife.org website is LIVE! In addition to featuring all current and past issues from 2013 - 2018, we have over 1,200 service providers in our resource directory from Oregon, Washington and around the United States. Please share this resource far and wide so that together, we can improve and grow this to be the strongest autism resource directory in the Northwest! Learn more on page 44. Best wishes for a fantastic summer!
Karen Krejcha Executive Director & Co-Founder: Autism Empowerment™ Editor: Spectrum Life Magazine™
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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. © 2018 All rights reserved.
ON OUR COVER
This month’s cover photo ties into many featured stories, including A Letter For All Our Students by Traci Johnson. See our cover story on page 28.
Your Chance for a Better Life
Although it is something she did on a regular basis, Susan was again anticipating feelings of stress and anxiety. When your child has autism, the weekly trip to the grocery store is no small task. However, this week it wouldn’t just be Susan and her son, Luke. Chance, an Autism Assistance Dog, would be with them
as well. Chance has been trained to act as an anchor in the event that Luke bolts, yet he is so much more than that. With Chance by his side, Luke feels more calm and confident. Simply put, with Chance’s help, the shopping trip was better. Life is better. Call to learn how an Autism Assistance Dog can help you.
www.spectrumsmagazine.org
Serving Oregon and Southwest Washington www.dogsforbetterlives.org
(800) 990-3647
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advocacy Photo: Michael Loccisano/FilmMagic.com (by permission)
EMPOWERING CHANGE WITHIN THE AUTISM COMMUNITY
IN THIS SECTION Peer Support in the School System...............................................................7 The Wallet Card.................................................................................................. 10
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ADVOCACY
Parents! Does Your Autism Spectrum Child’s School Provide Peer Support…
From Spectrum Grownups?
By Michael John Carley We learned many moons ago that if an African-American child is told “You have just as good a shot at the American dream as anyone!” that the child’s ability to believe the statement will probably differ based on whether the successful grownup saying this looks like the student (i.e., is a fellow AfricanAmerican), or doesn’t (i.e., he looks like me). We know pretty well that this also applies to folks whose heritage is Latino/a, Asian, visually-impaired…etc. Well, why are schools—especially the so-called inclusion schools—so reluctant to acknowledge that this concept also applies to kids on the autism spectrum (if not all non-apparent disabilities)? And what can you, as a parent, do about it?
Background: Peer Support for the Autism Spectrum Way back in 2003, I founded Global and Regional Asperger Syndrome Partnership (GRASP), which quickly became the world’s largest membership organization for adults diagnosed anywhere along the autism spectrum. By the time I resigned in 2013, GRASP had 28 chapters across North America, and (based on what you consider a true member) anywhere between 8,000-21,000 subscribers worldwide. GRASP revolved around a replicable support group model wherein the facilitator had to have the same diagnosis as the attendees. We at the national office would help set up, and thereafter support these chapters. At the time of my and my son’s diagnoses in 2000, there were almost no support groups for spectrum adults in the USA at all, and those that existed were run by clinicians or by kindly family members. These groups were better than nothing, but they also left the attendees feeling either like patients, or as though they’d just spent time with someone similar to their mom, grandfather…etc. When I took over the family-run support group in 2001 (that would later become GRASP’s 1st group), there were six attendees, and 15 people in circulation. But once an individual on the spectrum was running the group, there was more trust from the participants. They felt more comfortable, and revealed braver truths because they trusted that the facilitator would never shout them down for it. The result was shared experience, and within 18 months the attendees averaged 45, not six per meeting; and the number in circulation was over 440, not 15. “Peer support” is a concept that has worked for breast cancer survivors, returning war veterans…etc., but for many reasons had never before been tried with spectrumite grownups. But once GRASP began, adults on the spectrum learned a new definition of trust. Trust, we have to understand, is not synonymous with love. Many of us might have had the professor who yelled at us, that we trust because they’re brilliant, but whom we will never love. And on the other end, many of us have, for example, “the idiotic brother-in-law” whom we love, but will never trust.
Carley, giving a keynote address in Sydney, Australia in 2017. Photo: Asia Pacific Autism Conference (by permission)
It is a hard lesson to hear that while your child might love you with all their heart, they might not trust you to the degree you imagine or want… until you have proven to them (not told them) that you understand how they think, and feel, and see. In a personal example, I can even remember my mother, very clearly, when I was eight years old or so, and I’d screwed up. She had some information that was really important for me to learn. But because she was so stressed out when she relayed the info to me (I clearly remember her panicked voice, and shaking face), and because she had not yet demonstrated that she got me …I disregarded her advice. All I saw was an overwhelmed person that I loved. And I can remember my thoughts as she was hammering me with the advice. “Mom, how’s it working for you? How can I take anything you say seriously when you’re such a mess?” Luckily, mom was rarely a mess, and luckily we all know that love is more important than trust. And yet, parents have to understand, and not take personally that when grownups don’t understand our thinking, that mistakes can happen. When my generation was experiencing social problems with our peers, our parents would tell us, “Just be yourself.” Was there WORSE advice for a spectrum kid in that situation??? Obviously, today’s parents have it a lot easier because they not only know what their kids have, they’re also better at recognizing that their kids will not logically interpret things the same way they do. Parents know that they need more information, and to rely less on their instincts. They also know that the secret to raising special needs kids doesn’t only involve changing the lesson, it’s the salesmanship of the lesson that also needs altering. But do schools understand this? Continued on next page
Actress, Sigourney Weaver poses in 2008 with GRASP adult members,
<<< and autistic students from the New York City Department of Education.
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Peer Support, continued from page 7
Schools Just one year after GRASP was founded, in 2004, I was lured into the New York City Department of Education by some very progressive educators of the time (in particular, one Shelly Klainberg) from the city-wide special education district known as District 75 (D75). They wanted me to try the same concepts out on teenagers, and I honestly wasn’t sure it would work. But holy cow was I wrong. Likely because teenagers consider identity to be twice as important as grownups, the kids grabbed onto the concepts and rose out of their doldrums with a passion that blew their teachers’ minds. Over and over again I heard staff say, “We never realized that talking about their diagnosis would be helpful…” and “Because you’re on the spectrum like them, they’ll listen to you!” I even set up and ran parent support groups for the District. Technically, this was not peer support for parents (even though I have a son who is also on the spectrum), but parents are very often eager to hear what an adult on the spectrum says about their child on the spectrum, or the relationship they have with the child, so long as it is given in a supportive context. Parents were very grateful to the schools for those groups. Prior to that time, everyone was fearful of using the word, “autism” in reference to their students. But once these teachers understood that it is not the label that ostracizes their kids from others, but rather the behaviors of the label…then they got it that it was better for the kids to know what they had. Without that knowledge, or that label (“autism”), kids wrongly assume that their struggles negatively revolve around their character. But with knowing the word, they know the problems are about their wiring, not their character. In terms of emotional health and self-esteem, that is a biblical difference. From there, I adapted the curriculum for younger and younger students at D75, and now that I’m not running nonprofits, I implement this work in schools nationwide.
Go Ahead: Be a Cynic Does bringing peer support into the schools sound like a cosmetic expense? An empty PR gesture? Or as a way to merely employ some spectrum folk like me? Baloney. I and the others who do this work save schools a bundle, and it’s not because we’re cheap. How? • Out of district placements. Many districts, if they feel they cannot handle the “problem child” in a way that is safe for everyone, will sometimes give up on inclusion and ship the child to an outside school that only handles behaviorallychallenged children. These transfers to high-tuition centers cost districts anywhere between $32,000-$358,000 a year per child, and nationwide, there are 330,000 special needs students whose care costs over $100,000. If we can significantly help make the relationship work, and keep that kid in the district, we’ve saved the school a lot of money, kept the child in a more inclusive learning environment, and pumped the district’s reputation for inclusive practices through the roof.1,2
Well, an average turnover costs districts $7,500, teacher turnover on average costs districts $54,000 per year, and overall, American schools fork over $2.2 billion on teacher turnover each year.4,5 • Ok, this last bullet point doesn’t save schools money, it saves society money. Any time you take someone destined for institutionalized living, a group home, or supported housing, and increase their adult independence towards becoming a productive citizen? We all save. While I personally never promise any improvements in academics (my only professional concern is that students graduate as emotionally healthy, happy human beings), I will chime in the unsupported boast that such work of course improves academics. If peer support reduces anxiety, anger, and depression, then it therein increases their capacity for both emotional and physical regulation. No one can learn if they are not regulated. But school districts outside D75, and outside New York— especially in the Midwest—still resist this knowledge. In my new home state of Wisconsin I’ve worked in two great districts (both in the Milwaukee area), but I also send out personalized emails to the hundreds of Wisconsin Special Education Directors every year. (Hey, who doesn’t want to work where they live?) Despite great references from every district I’ve ever worked in, I can count on two hands how many of those directors write back, even just to say “Thanks, but no thanks.” (Granted, Wisconsin might be an unfair example as it has changed—for reasons that require another article—from a state with a rich, educational history, to becoming one of the most unimpressive school systems in the country. But Wisconsin is not alone in rejecting these new ideas.)
Why Wouldn’t Schools Embrace Such Cost-Effective and Humane Innovation? Several reasons: • More than ever, public schools are under enormous, and often ridiculous pressure to perform for heavily-politicized school boards, reporting standards, and beyond clueless national entities (a la Betsy DeVos). All of these counterforces pretty much reject innovative thinking as a rule. And in some communities, despite the rapidly rising special needs student enrollment, the school officials who wish to put forth the innovative strategies might even be mocked by public officials. (And if I sound too political herein, let me throw it back at you to say that anyone who politicizes education and health care…is sick [and I say that supportively]. By nature, these are bipartisan subjects that Americans have made political.)
• The prevention of lawsuits. Each school district will spend anywhere between $20,000-$240,000 per lawsuit—and that’s even if the district wins. Lawsuits won by the plaintiffs can result in the forfeiture of millions of dollars.3
• Private schools too, resist these notions, but for different reasons. Private schools, unlike public schools, are often far too responsive to parents, and as a result are too scared to introduce concepts such as these. Private school parents, we have to understand, have different realities, and they are infinitely more prone to feelings of “Don’t respect my kid, FIX my kid!” than the often overwhelmed public school parents are. They hope their children learn to hate the diagnosis as they do. And while some private school parents can be just as wonderful as some public school parents, private school parents are more prone to worries of “what will the neighbors think,” as it has greater real or imagined consequences for them.
• Preventing teacher turnover. Frequently I’ve consulted for schools that needed me to conduct building-wide, morale repair jobs amongst staff…rather than work with specific kids or staff.
• There is a rather immature “Us against the world!” component to peer support, that many educators and parents are afraid of. But while this is of course a stepping stone that will need
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Peer Support, continued from page 8 refinement on the way to emotional maturity, it’s also an immensely healthy feeling that everyone needs to feel (about who they are) at certain parts of their lives. • Given what we know about the aforementioned example using African-American kids and grownups…how many schools actually know even this? In New York, half the teachers I saw in schools were non-white. But in Wisconsin communities of color, I rarely see African-, Native-, Latin-, or Asian-American teachers. • Backwards administrators—in both public and private education—who believe in all the aforementioned backwards thinking. They exist. (Yup…especially in Wisconsin!)
Well, if the Schools Are Reluctant, What Can I Do? 1. Special Education or Pupil Services Directors—public or private—listen to parents, even when new innovations threaten them. If they won’t? Go above their heads to the Principal, the District Superintendent, or even the School Board. 2. Argue the concepts listed above, especially the money-saving aspects.
3. Access loads of evidence-based data from Peer Support Resources at http://www.psresources.info/the-evidence or these additional studies from the National Coalition for Mental Health Recovery, https://www.ncmhr.org/downloads/ References-on-why-peer-support-works-4.16.2014.pdf If the school official argues against peer-support with the concern, “What will my other staff think?” then ask to speak to the staff, so that you can ask them yourself if they really are offended by the notion of receiving advice from a consultant/ peer support specialist on the spectrum. Are the staff really as bigoted as the administrator is implying? Probably not. Maybe the official will argue that, “Our data says we’re doing just fine, and the kids don’t really need peer support.” Lately, lots of districts try this as an effective counter to problem parents like you. Data, unfortunately is now being used to hide truths as well as to discover truths. Ask “data God,” Nate Silver, and he’ll tell you that very few people really know how to use data. Still, schools love to play with “data.” And in Wisconsin and perhaps elsewhere, they additionally love it because their political overseers don’t understand data either, and will therefore sign off on it rather than admit that they don’t get it. Data, the lesson herein states, sounds good. So here’s what you do in these data cases…ask them about the data. Ask to see not only the results (which they’ll be happy to give you), but ask also to see how the data was collected, or how their study was conducted (herein they’ll start to get a little nervous). I recently had conversations with a comical district near where I live in Wisconsin, who wanted me to assume that simply because they were working with data, that they were God’s gift to spectrum people. They told me that their data showed that parents were happy with the job they were doing. So I then asked about the parents that I knew were immensely and rightfully angry at them. Did those parents really partake in the 20-minute study? No, as it turns out, they were too angry to fill out the survey. Why would they give 20 minutes of their time to an entity they were furious with? In the district’s data, those families were all reflected in the “did not participate” numbers that the study reported. And if you took that column as mostly negative responses (instead of the
implied neutrality), and slid it over into the “am not happy” column, then the story the district’s data told was shown to be a lie.
Conclusion As I mentioned in the beginning, there are few of us doing this kind of work. But if it’s not feasible to bring us in, your district can cultivate a local adult on the spectrum—one who’s a healthy and happy human being—to do the job. And he or she can learn how to do it by studying the work, or the support groups of GRASP as well as any organization that advocates for peer support. Your child deserves to feel good about him/herself. White people can’t do it for kids of color the same way, and “neurotypicals” can’t do it for spectrum kids the same way. And if that hurts the feelings of your school community, then they have a lot of catching up to do. It is not an insult. Instead of your child being firmly told that something they said was inappropriate, imagine someone tapping that child on the shoulder, and then instead, prefacing the lesson of inappropriateness with, “I’ve been there.” Such merciful, anxiety-reducing relief has been available to autism spectrum students since we started it all in 2001. Tell your school that it’s time, and that Peer Support benefits everyone.
References: • Laura E. Gillis, Attorney at Law. https://www.legillislaw.com/ practice-areas/out-of-district-placements • Marino MA, CCC-SLP, Sheri A. Part 2: The Special Ed Epidemic: Burying Our Heads and Crippling Our Economy. Focus for Health. December 20, 2017. https://www.focusforhealth.org/part-2-thespecial-ed-epidemic-burying-our-heads-and-crippling-our-economy/ • Trager, Kevin. Lawsuit Costs School District $240k in Attorney’s Fees. Channel 4. August 9, 2017. http://www.wsmv.com/story/36102696/ lawsuit-costs-school-district-240k-in-attorney-fees • Phillips, Owen. Revolving Door of Teachers Costs Schools Billions Every Year. National Public Radio (NPR). March 30, 2015. https://www.npr.org/sections/ed/2015/03/30/395322012/ the-hidden-costs-of-teacher-turnover • Mimms, Christina. Teacher Turnover Costs How Much?!?!?! Serving and Accrediting Independent Schools. April 13, 2016. http://www.sais.org/news/283215/Teacher-Turnover-Costs-How-Much.htm This article was originally published for Exceptional Parent Magazine in April 2018. Reprint permission was granted by Michael John Carley and EP Magazine at http://www.ep-magazine.com.
Michael John Carley is the Founder of GRASP, a School Consultant, and the author of “Asperger’s From the InsideOut” (Penguin/Perigee 2008), “Unemployed on the Autism Spectrum,” (Jessica Kingsley Publishers 2016), the upcoming “Book of Happy, Positive, and Confident Sex for Adults on the Autism Spectrum…and Beyond!, and the Huffington Post column, “Autism Without Fear.” In 2000, he and his son were diagnosed with Asperger’s Syndrome, and re-evaluated in 2014 under DSM-5, Carley was diagnosed with Autism Spectrum Disorder. For more information on Michael John, or to subscribe to his updates, you can go to www.michaeljohncarley.com. www.spectrumlife.org www.spectrumsmagazine.org
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ADVOCACY
The Wallet Card Help When Responding to Law Enforcement By John Krejcha Have you ever been in a car when the police signaled for you or the driver to pull over? Whether or not you have done anything wrong, it’s an anxiety-provoking situation for most people. What if someone you loved had a medical incident that required a paramedic or other first responder? Would you be able to share information on-the-spot or would you be too distracted by noises, sights or other stress? Consider being questioned by a police officer as a potential witness to a crime or accident or for what was perceived as suspicious behavior. Would your thinking be clear? If you’re autistic, your response to at least one of these scenarios might be to cover your ears to the noise of sirens and turn away from flashing lights. You might have a fight or flight urge to flee for fear that even though you’ve done nothing wrong, you might be misunderstood. What if a police officer thinks that your mannerisms or strategies you’re using to try and calm yourself (e.g., rocking, flapping, humming, pacing) are a sign that you’re abusing drugs or alcohol? What if your cadence or raised voice is perceived as belligerence or disrespect? What if you freeze and can’t find your words? These are legitimate concerns. First responder training across the country to appropriately recognize signs of autism and autistic behaviors and teach a variety of positive strategies for response is inconsistent and in many cases practically non-existent. Fortunately a nonprofit organization in Florida called Disability Independence Group created a program to assist teenagers and adults when communicating with first responders. It’s called The Wallet Card™. What is The Wallet Card? The Wallet Card is a personalized card designed as a tool to aid a teenager or adult on the autism spectrum or with intellectual disability to communicate with law enforcement or first responders. Sized to fit in a wallet along with other identification, The Wallet Card can be shown to a first responder to let them know that the person they are interacting with has a disability. The card was developed by Disability Independence Group (DIG) in collaboration with The Coral Gables Police Department (CGPD), and The University of Miami Nova Southeastern University Center for Autism and Related Disabilities (UM-NSU CARD). Although the card was designed in Florida, it can be received and used throughout the United States and even internationally.
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Who can use The Wallet Card? The card is primarily designed to be used by teenagers and adults on the autism spectrum but it can also be requested for teenagers and adults with intellectual disability. The requesting person needs to be at least 14 years old. Parents may request cards for their children as long as age and disability qualifications are met. What kind of information is on The Wallet Card? • Each card has the name of the cardholder as well as an emergency contact and phone number. For autistic cardholders, the card says that the cardholder has an Autism Spectrum Disorder (ASD). • The card explains that ASD is a social/communication disability and lists any secondary disability a cardholder may have indicated on their application. • The card has a section “Because of my disability” which indicates challenges that a person may have. For example, cardholders may have difficulty making eye contact, may have trouble expressing themselves and may not be able to understand or comprehend all questions. A first responder should not assume that this alone constitutes suspicious behavior. • The card indicates that the cardholder would like to cooperate and gives suggestions on how a first responder can help. It suggests for first responders to clearly identify themselves, avoid touching or restraining if possible and to talk slowly, directly and use clear and concrete language. • The card says that a person might speak too loudly or softly or with unusual intonation. It mentions a person might be sensitive to loud noises or flashing lights. They might also be nervous or overwhelmed. • The card also includes a bio-dot that changes color according to a person’s stress level, either relaxed, calm, nervous or tense. Are there any restrictions other than age? The card is not a “get out of jail free” card. If you break the law, you will be arrested. The purpose of this card is to clarify any misunderstanding a cardholder might have with the police or first responders because of their disability. This is also not an identification card and does not replace any state or government identification card. Continued on next page www.spectrumsmagazine.org
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live in the United States. It should take about four weeks to receive your card if it is being mailed internationally. How can “The Wallet Card” program support local Law Enforcement? The program has a component that works with local police departments around the country. A police or sheriff’s department can request a free training (written and video) that was developed by funding from The Coral Gables Police Department that teaches other law enforcement agencies on how to interact with individuals on the autism spectrum. The training is free for the local departments and counts toward most agencies training credit. Currently, there are three Washington State law enforcement agencies that use this training. They are Tukwila Police Department, Mercer Island Police Department and Kitsap County Sheriff’s Department.
How do I apply? First, you and/or the person you are applying for are asked to watch a video on the Disability Independence Group’s website. This ten-minute video explains how to use The Wallet Card, when to use The Wallet Card, and gives you tips on how to safely interact with law enforcement and first responders. It includes depictions of three different scenarios where The Wallet Card brings clarity to interactions between people on the autism spectrum and law enforcement.
Disability Independence Group encourages law enforcement agencies in Washington, Oregon and around the country to request and access this free training. All law enforcement agencies have to do is to contact Deborah Dietz, Executive Director at Disability Independence Group. She can be reached at (305) 669-2822 or via email at walletcard@justdigit.org. For more information on Disability Independence Group programs, please visit www.justdigit.org.
Once you have watched the video, you can fill out the application form on the website and they will make you a customized wallet card. You will be asked a short series of questions to create your card. You can also add two custom statements. There is a list on the website of 12 suggestions that you may choose from or you can create your own. Examples include “I may pace or flap my hands” and “I am more comfortable writing things down.” The website link for the video and application is https://www.justdigit.org/wallet-cards/ How much does the card cost? It is free for those within the United States. If you live outside of the USA, there is a $2.00 fee. If you need a replacement, there is a $5.00 fee. What about privacy, will the names be stored in a registry? No, your name and information will not be put into a public registry. The name will be stored in DIG’s secure database in case a replacement card needs to be created. How long does it take to receive the card? With processing and mailing time, on average it takes about one week to ten days to receive your card if you
“Officer” John Krejcha is co-founder of Autism Empowerment and serves as Program Director where he oversees Community Outreach. He also serves on the Editorial Advisory Board of Spectrum Life Magazine. John is married to Autism Empowerment co-founder, Karen Krejcha and is the father of two amazing sons, Justin and Ryan. While John is the only one in his family who is not on the autism spectrum, he is also neurodiverse. www.spectrumlife.org www.spectrumsmagazine.org
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lifespan ALL AGES AND ABILITIES
IN THIS SECTION Autism and Non-Fluid Speech..................................................................... 14 Ask Spectrum Life.............................................................................................. 16 Empowering Women & Girls with Autism............................................ 18
www.spectrumsmagazine.org
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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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LIFESPAN
Autism and Non-Fluid Speech Sometimes what is in our head, won’t come out of our mouth. By Judy Endow, MSW, LCSW I am a speaking autistic woman. Even so, I rarely have fluid access to my speech. Oftentimes I have in mind something I would like to discuss with a friend so as to get their thoughts and ideas on the topic, but even though I know what I want to discuss, the words are not available as speaking words. Oh, I know the words – they are in my head – I just cannot get them to come out of my mouth at will. This often poses difficulties for me. One example is when I am with my friends who I consider to be brilliant in the field of autism. Most of the time I am with them for a purpose, so we have an already planned agenda with little time for novel thoughts and musings. We are all busy people in our professional and in our personal lives. Rarely is there time to get together for no reason at all – the times when I am most able to get the ideas in my head out through my mouth in speaking words. Because I talk – and I can talk a lot – people who do not know me well are unaware of this difficulty. People can easily see movement difficulties that are physical such as when a person has difficulty getting through a doorway or get stuck in a repetitive movement. However, nobody can see when the movement difficulty is internal such as words that cannot come out as speaking words at the time you wish to say them. (Endow, 2013) Over the years I have come up with several strategies to encourage the speaking words out of my head. The reason I need several strategies to try is that I never know which one might work when and sometimes, even though I try all the strategies, I still have no success. Here are the three main strategies that sometimes work for me to get the ideas in my head to come out as speaking words:
this in my head, I am able to “read” the words as a launching into the conversation I wish to initiate. When the strategy doesn’t work, nobody can tell because they cannot see the picture in my head so I do not get “faulted” socially. I wrote about this last strategy more than twenty years ago. It was first published as a poem in my first book, Making Lemonade: Hints for Autism’s Helpers (Endow, 2006). A few years later, this one written poem became the catalyst that allowed the words of an entirely new book to be written called Paper Words: Discovering and Living With My Autism (Endow, 2009). The poem is on the next page. Notice the unusual spacing. The empty spaces represent the pause in time it takes, even when writing, for the next word to come in so I might write it down. As you read, please contemplate how internal movement differences might be impacting autistic individuals you know. REFERENCES: Endow, J. (2006). Making Lemonade: Hints for Autism’s Helpers. Cambridge, WI: CBR Press. 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. This article was originally published for Ollibean.com on June 13th, 2015. It also appears on Aspects of Autism Translated at www.judyendow.com.
• Begin speaking any words. Sometimes this allows the words I really want to speak to hook onto the random words and thus be carried out of my head through my mouth as spoken words. When the strategy doesn’t work at least I get credit for “being social” – an area I can easily get “downgraded” in if not putting forth effort. • Use a research article that has some aspect I can use as a launching pad. Sometimes if I can start speaking about a research article that is somehow related to my ideas, the ideas in my head can hook onto this and come out of my mouth. When the strategy doesn’t work at least the conversation was about some new and interesting research. • Use written words. Sometimes if I write down the words I wish to speak, then, when I am with the person I want to have the conversation with, I can pop up the picture of the piece of paper I wrote the words on. By seeing
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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. www.spectrumsmagazine.org
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Paper Words Paper words can be heard;
so speak up ink
and say them!
Speaking words
are burdensome;
they get her
lost and tangled.
So,
pen and ink
are her first choice
to voice
When speaking
what sheâ&#x20AC;&#x2122;s not saying.
words
two people should
take their turns Start words
then stop
to say them. now
and wait
and listen
But,
some
adds up to conversation.
starting words
and stopping them;
and
is much
seeing faces
too much
to keep track
of
when having
So,
conversation.
paper words
are much preferred.
speak up ink;
now say them! Listen people
to the ink;
you wonâ&#x20AC;&#x2122;t get
lost or
tangled! www.spectrumsmagazine.org
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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 across the lifespan for our community. Dear Spectrum Life: It seems like we finally got into the rhythm of school routine and now it’s going to be summer break! I have a 13-year-old son, 8-year-old son and a 6-year-old daughter, all with autism and sensory issues. How do I keep my tribe regulated and occupied without us all going bananas? We received a lot of similar questions about this topic so instead of answering two separate reader questions this issue, I’m going to focus on this one as it impacts so many Spectrum Life readers. Going from a weekday structured school routine to an unstructured summer can wreak havoc on any family. Although there is a tendency to want to occupy your children’s days with plenty of fun activities and play dates, when you have children of different ages and interests, it can become very overwhelming, very quickly. Keeping a sense of routine and structure provides predictability and security, so try to build some sense of consistency into each day and each week. This should include consistent bedtimes, daily rituals, and hygiene routines and can also include things like daily exercise, quiet time, screen time and mealtimes. It may seem like a hassle but chances are that your school cafeteria creates a monthly calendar in advance for lunches, so perhaps you can create one too for certain meals and add in a flex day once in awhile. (There is a lot to be said about not having to answer the “What’s for dinner?” question from multiple children day after day after day…)
When thinking about scheduling your children’s days, take into consideration their hobbies, strengths, challenges, triggers and sensory differences. Also, think about their personalities and whether they become energized or exhausted in social situations. Many parents make the mistake of trying to be too social and forget planning downtime for decompression and sensory breaks. As far as regulation goes, summertime throws a lot of people off. Be prepared by creating a sensory emergency kit for your family and taking it with you when you travel. Depending on needs, items can include: noise-canceling headphones, a variety of fidgets, chewable jewelry, an iPod with calming music, a favorite stuffed animal, favorite snacks, a book, a weighted vest or blanket, mint gum, a coloring book with crayons, a squeeze ball, and a journal. Think about what helps calm you and your kids and try to use it when you start to see the signs of overload or escalation. A lot of people on the spectrum have a tendency for things to be “out of sight, out of mind.” If they don’t see it (as they’re immersed in something else), it’s often as if it doesn’t exist and the concept of how much time has passed if you do not have a clock can be difficult to ascertain. Visual reminders and tools like visual timers, sticky notes, and watches help us stay on track. I also recommend having a “School’s Out” summer calendar for each of your children and placing it somewhere they will regularly see, like a bedroom wall. Encourage them to write in important dates like holidays, birthdays and special events. Later you can add in other activities. Continued on next page
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Ask Spectrum Life, continued from page 16 To learn more about visual reminders and visual schedules, be sure to read Judy Endow’s Summer 2017 article, Creating Visuals Instantly for Unpredictable Activities at Spectrum Life. https://www.spectrumlife.org/blog/creating-visualsinstantly-for-unpredictable-activities-40
Things to do and places to go? As far as keeping occupied, some families choose to put their children into day camps or summer school type programs thinking the consistency will help but for many of our kids, meeting new camp counselors, inclusion mentors, peers or teachers can be quite overwhelming. It can be easier if the camp is themed to a subject they really love (e.g., Minecraft or comic book characters) or if they have a friend who is also attending, but if they’re engaging in anything new, try and get a schedule in advance from the camp and consider creating your own modification of it as a drawing or visual story so that your child will have a better idea of what to expect. For the readers in your family (and we’re all readers), check out A Spectrum of Fictional Characters on page 24. We make suggestions of nine novels that are great for independent summertime reading. Many of the stories are so great, parents will want to check them out too. Some can even be read to younger children. In our Summer 2017 issue, John Krejcha wrote a piece called 7 Sensory Friendly Summer Activities.
Almost all activities listed are still ongoing. Examples include monthly sensory-friendly movies, sensory gym times and sensory jumps and flights. There were connections to local libraries, outdoor adventure, local museums and community events with support groups and autism organizations. You can go to SpectrumLife.org to read the article. https://www.spectrumlife.org/blog/7-sensory-friendlysummer-activities-117 Also in the same issue, check out Aaron Blackwelder’s cover story about Passion Projects. Passion Projects are for all ages and are individualized projects about a topic that caters to a person’s interests. They can be ongoing where you schedule time each day or week to work on or they can have a set time for completion. This is a fun activity that your three children can participate in. For more authenticity and perhaps a selfcare break, you can join in too! You’ll each choose different projects based on your interests but you can spend quality family time together discussing the projects as they are in development and after they are finished. Let us know how your projects turn out! https://www.spectrumlife.org/blog/passion-projects-howto-engage-your-child-44 Summer 2017 issue online: https://www.spectrumlife.org/summer2017
GOOD LUCK!
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LIFESPAN
Empowering Women and Girls with Autism
Diagnosis can promote Empowerment. By Karen Krejcha Many in the autism community know that April 2nd is internationally recognized as World Autism Awareness Day. Members of the United Nations are encouraged to take measures to raise awareness about people with Autism Spectrum Disorder (ASD) throughout the world. The first World Autism Awareness Day was in 2007 and for the past few years, each World Autism Awareness Day focused on a special theme designated by the United Nations. In 2016, the theme was “Autism and the 2030 Agenda: Inclusion and Neurodiversity”. In 2017, the theme was “Toward Autonomy and Self-Determination” and in 2018, the theme was “Empowering Women and Girls with Autism”. A special program to commemorate and share the importance of this theme took place at the U.N. Headquarters in New York on Friday, April 5th, 2018 from 10:00 a.m. - 1:00 p.m. To see a copy of this program, visit: http://www.un.org/en/events/autismday/ Secretary-General António Guterres had this message to share: “On World Autism Awareness Day, we stand up for the rights of people with autism and speak out against discrimination. This year’s observance highlights the importance of empowering women and girls with autism.” “They face multiple challenges including barriers to accessing education and employment on an equal footing with others, denial of their reproductive rights and the freedom to make their own choices, and a lack of involvement in policy making on matters that concern them.” “Our work for gender equality and women’s empowerment must reach all the world’s women and girls. And our efforts to achieve the Sustainable Development Goals must uphold the 2030 Agenda’s core promise to leave no one behind.” “On World Autism Awareness Day, let us reaffirm our commitment to promote the full participation of all people with autism, and ensure they have the necessary support to be able to exercise their rights and fundamental freedoms.” The keynote address was given by Julia Bascom, Executive Director of the Autistic Self Advocacy Network. Here is an excerpt of her introduction. “I want to start by acknowledging the sheer number of self-advocate speakers the U.N. has brought together today. I believe every panel has at least one self-advocate speaker, at least one authentic voice, and several are 50/50. That’s the kind of thing that should be commonplace. That should be
the baseline assumption we have about autism events. But unfortunately, it’s still very out of the ordinary. So I want to recognize the leadership the U.N. is showing, not only in bringing so many outstanding autistic women together, but in working so closely with us to set today’s agenda. This is an exciting time and a promising change.” In reference to the importance of diagnosis: “As a society, we still see autism as a negative, sad, scary thing. But for autistic women, an autism diagnosis can be a tool for empowerment. It’s an answer and an explanation, it’s a way out of cycles of self-blame and guilt, it’s a passport to an entire community, and if we’re lucky, it’s a connection to the understanding, supports, and services we need in order to truly thrive, sometimes for the first time in our life.” “Access to diagnosis, however, is still deeply inequitable. Autistic women and girls are diagnosed much less frequently than autistic boys, and we’re often diagnosed later in life, or after we’ve gone through a roulette-wheel of other labels. One of the most common ways for autistic women to get diagnosed, in fact, is after we bring our own children in for assessment. The diagnostic criteria for autism are normed off of four-year-old white boys in upper-middle-class families in the U.S., so anyone who doesn’t fit in that box has an uphill climb.” Continued on next page
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Empowering Women and Girls, continued from page 18 Although Ms. Bascom knew that many of the autistic women in the audience would understand, she shared an insightful reminder for those not on the autism spectrum or for those believing that autism is primarily for boys and men. “The reality is autistic women have always been here. We’ve always been everywhere. We’re being noticed more now, which is new, but our existence and our strength and our vibrancy and the complexities and trials and joys of our life have always gone on regardless of who sees us. What I’m going to say might be new to people who haven’t been paying attention, but we know that autistic women have always had a lot to say about our lives and our communities and our world, and we’ve been saying it for a long time.” Panel topics for the day were weighty material: • • • • • •
Ableism, Sexism, Racism… How They Intersect “Please Stand By” - Women with Autism in Film (Part I) Gender Disparity in Diagnosis: Causes and Consequences Heightened Risk - Violence, Sexual Exploitation and Abuse “Keep the Change” - Women with Autism in Film (Part II) The Four “E”s: Education, Employment and Economic Empowerment
A few of the self-advocates featured as panelists included: • Morenike Giwa-Onaiwu, Autism and Race Committee Chair, Autism Women’s Network • Amy Gravino, Autism Consultant and College Coach, A.S.C.O.T. Consulting • Sharon daVanport, Executive Director, Autism Women’s Network • Dena Gassner, Member, Board of Directors, The Arc • Sarai Pahla, Medical Doctor, Translator and Self-Advocate, South Africa You can watch a recording of the day’s program here: http://bit.ly/unautism2018 Although coverage of the day’s events did not appear to be as widely covered as women might have hoped, the fact that these conversations are taking place on a national and international stage with autistic women at the table is promising. Watching autistic and allistic adults working together for the empowerment of women and girls on the autism spectrum is positive and important work. We encourage the conversation to continue.
A dvocacy and E mpowerment R esources for Autistic W omen and G irls :
T
Autism Empowerment Women’s Resource Center http://bit.ly/spectrumwomen
Autism Women’s Network https://autismwomensnetwork.org
Autism Women’s Network Pacific Northwest https://www.facebook.com/groups/AWNPacificNW
Autistic Self Advocacy Network http://autisticadvocacy.org
Autistic Women’s Association https://www.facebook.com/autisticwomensassociation www.spectrumlife.org www.spectrumsmagazine.org
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recreation INCLUSIVE WAYS TO HAVE FUN
IN THIS SECTION Autism and Disability in Literature ............................................. 22 A Spectrum of Fictional Characters.............................................. 24
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www.spectrumsmagazine.org Visit WinCoGolf.com and select Autism Empowerment! 21
RECREATION
Autism and Disability
in Literature
Keeping
it
Real
By Karen Krejcha Author, musician, and Autism Empowerment board member Brian Tashima recently had the good fortune to attend a writer’s conference in sunny Florida, where he was not only an attendee, but also a panelist speaking about a very important subject. Spectrum Life Magazine sat down with him to find out more. You recently left the Northwest! What was the purpose of your travel? This past March 7th-10th, 2018, I went to Tampa, Florida to attend the 18th annual Association of Writers and Writing Programs (AWP) conference. I had been invited to participate in a panel on disability in children’s literature. How many people attended the conference? I believe around 12,000 or so. Wow, that’s a pretty large conference. Why does it attract so many people? AWP is an organization of writers, teachers, students, and other professionals in the literary community. The conference, which is now the largest of its kind in North America, brings its members together for four days of panels, presentations, and networking. It was really energizing and inspirational. I met a lot of great people and had a fantastic time. That’s terrific. Please tell us more about the panel you were on. It was called “Disability in Children’s Literature: Not an Anomaly, an Imperative.” The official description went as follows: “Children and young adult readers deserve realistic characters reflective of themselves and the people around them. Yet, too often, kids with physical or intellectual disabilities are absent from literature for young readers— or, if present, the disability is the focus of the book. We’ll discuss how authors can responsibly integrate characters with varying abilities into their work so that the disability isn’t the story, but merely a challenge that a particular character faces within the narrative.” Great topic choice and certainly an important one for our community! Do you know the process for how this panel topic was chosen? Melissa Hart, the author of several great books including Avenging the Owl, had submitted a proposal for the panel to AWP. Avenging the Owl features a character with Down syndrome, so Melissa is quite familiar with the topic. I heard
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that less than half of all proposals get accepted, so she did a great job in presenting it for consideration—she wrote the description I gave you in the previous answer. And besides, I think that it’s an important topic that needs to be discussed, especially given the current cultural climate. Who was on the panel with you? Melissa was unable to attend, but I was joined by Naseem Jamnia and Rachel DeWoskin. Naseem is a nonbinary Muslim writer who is working toward their MFA and has written articles for numerous publications. Rachel is the author of Blind, a story about a girl who loses her eyesight in a terrible accident, and Big Girl Small, about a teenage little person who wants to be Judy Garland. What kind of questions did you answer? Was the panel moderated or did the questions come from the audience? Melissa and Naseem had come up with a great list of questions beforehand, and the panel—moderated by Naseem—took turns asking each other the questions and providing their individual answers. Afterwards, we opened it up to the audience. Most of the questions revolved around how to write characters with disabilities in a realistic and responsible manner. A couple of the questions were about Autism Empowerment, which I was more than happy to talk about! Did anyone on the panel identify with a disability? If so, what type? No one had a disability that I was aware of, but I think that’s okay. To paraphrase one of Rachel’s answers, writing—and reading—is about putting yourself in someone else’s shoes, trying to experience life and the world from their perspective. What steps can authors take to make sure that their writing is respectful to people and not ableist? First of all, do your research. If you yourself do not have the particular disability that you plan on writing about, reach out to people who do. Immerse yourself in their lives. Find out what they think, how they feel, what their challenges and their accomplishments are. In my case, my son is on the spectrum and I’ve been active in the autism community for many years, dating back to before the time I even started writing my series. Rachel spent a year studying Braille and hanging out with blind teens at their school. She also became involved with Little People of America, a nonprofit organization that provides support to people of short stature and their families. Continued on next page
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Autism and Disability in Literature, continued from page 22
Employing sensitivity readers is also a good idea. Sensitivity readers are people who will read drafts of your manuscript and provide you with specific feedback regarding how your disabled characters are being presented. In one of her articles, Naseem had said that “sensitivity readers aren’t for the writer, but for the readers of an essay or a book.” I think they had a great point, as the final reader of any piece of writing is ultimately the person who will be the most affected by it. Using a sensitivity reader beforehand can help ensure that your book’s audience will have a positive experience. I love the idea of sensitivity readers and think that is a strategy that would work well for both fiction and nonfiction. Do you get a sense that most writers who feature characters with disabilities in their books were influenced in real-life by someone with that disability?
manner. As I mentioned in a previous Spectrum Life article about fictional autistic characters, I feel that representation is very important—especially for kids, who are looking to see themselves in the books that they read. I think that even imperfect portrayals—and, granted, there are a few of those— are a step in the right direction, because at least they invite discussion, which, hopefully, will lead to continued progress. Thank you for sharing your experience! All of us at Autism Empowerment and Spectrum Life are glad that you were able to represent our organization and the autism community at such a prestigious event. My pleasure! It was a terrific honor to be on the panel. I’d like to thank Melissa for inviting me to be part of it, and Naseem and Rachel for being such incredible panel-mates. I hope I get a chance to do something similar again in the near future.
I believe so. Most writers I’ve met that feature disabled characters are either disabled themselves or have a close family member who is. Melissa’s brother has Down syndrome. Naseem, who is working on a manuscript featuring an autistic character, has a brother on the spectrum. Rachel was originally influenced by The Black Book of Colors, a children’s book that contains images you feel rather than see, but as I mentioned, she proceeded to deeply engage with the blind community and, I’m sure, gained a lot of inspiration from the real-life people that she met. What do you think is the future of disability in literature? That’s a great question. My hope is that the portrayal of disabilities in literature continues to expand and improve, and that writers of all abilities feel encouraged and inspired to share their own stories and experiences in a positive, respectful Brian Tashima is author of The Joel Suzuki Series, a coming-of-age young adult sci-fi fantasy series that takes readers to a world where music is magic and autism is a superpower. The first three books in the series are Secret of the Songshell, Mystery of the Moonfire and Legend of the Loudstone. For more information, visit www.joelsuzuki.com. www.spectrumlife.org www.spectrumsmagazine.org
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RECREATION
A Spectrum of Fictional Characters Nine novel ideas for summer conversation. By Karen Krejcha Whether you’re looking for education or an escape, books resourcefully provide the remedy. They also provide helpful conversation starters for talking with our children, friends or loved ones about important topics like disability, difference, inclusion, kindness, and acceptance. Looking for diverse summertime reading for you or someone you care about? We’ve got you covered! Recommended age (RA) is given as a guideline, however, parents wishing to read with their children as well as older teens and adults may also appreciate the topics covered. Enjoy! Avenging the Owl by Melissa Hart (2018) - Thirteen-year-old Solo Hahn is a mixed-race kid with a big-screen TV, a room full of surfing trophies, and a beach house in Southern California. Then his father, worn down by a Hollywood career, attempts suicide, and his mother moves the family to a trailer in Oregon where a great horned owl attacks the only thing that matters to him. When Solo tries to shoot the bird and injures a neighbor boy with Down syndrome, he’s forced to do community service at a raptor rescue center with his newly-sworn enemies… owls. (RA: 11 - 13+) Blind by Rachel DeWoskin (2016) - When Emma Sasha Silver loses her eyesight in a nightmare accident, she must relearn everything from walking across the street to recognizing her own sisters to imagining colors. One of seven children, Emma used to be the invisible kid, but now it seems everyone is watching her. And just as she’s about to start high school and try to recover her friendships and former life, one of her classmates is found dead in an apparent suicide. Fifteen and blind, Emma has to untangle what happened and why—in order to see for herself what makes life worth living. (RA: 12+) El Deafo by Cece Bell (2014) - Going to school and making new friends can be tough. But going to school and making new friends while wearing a bulky hearing aid strapped to your chest? That requires superpowers! In this funny, poignant graphic novel memoir, author/illustrator Cece Bell chronicles her hearing loss at a young age and her subsequent experiences with the Phonic Ear, a very powerful—and very awkward—hearing aid. (RA: 8 - 12+)
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Fish in a Tree by Lynda Mullaly Hunt (2017) - Ally has been smart enough to fool a lot of smart people. Every time she lands in a new school, she is able to hide her inability to read by creating clever yet disruptive distractions. She is afraid to ask for help; after all, how can you cure dumb? However, her newest teacher Mr. Daniels sees the bright, creative kid underneath the troublemaker. With his help, Ally learns not to be so hard on herself and that dyslexia is nothing to be ashamed of. As her confidence grows, Ally feels free to be herself and the world starts opening up with possibilities. She discovers that there’s a lot more to her—and to everyone—than a label, and that great minds don’t always think alike. (RA: 10+) Joel Suzuki Volume I: Secret of the Songshell by Brian Tashima (2012) Escape to a world where music is magic and autism is a superpower! As a sensitive sixteen-year-old on the autism spectrum living in a single-parent home, Joel Suzuki leads a stressful life full of bullies, bad grades, and money woes. However, life quickly changes when he bumps into his favorite rock star, multiplatinum bandleader Marshall Byle, who is supposed to be dead. Joel gets an even bigger surprise when Marshall makes him the offer of a lifetime: the chance to become a rock star himself. There’s a catch, of course, but this one is a little different. To unlock the shortcut to success, Joel must travel to an alternate world where his unique brain waves can be combined with the sound waves of music to create magical effects. If he can learn to harness these powers, he will be able to write songs that capture the hearts of millions. Figuring that stardom will solve all of his problems, he accepts Marshall’s offer. But once Joel arrives in the new world, he meets another teen on the spectrum, Felicity Smith and finds himself faced with an unexpected audition that is unlike anything he has ever imagined. (RA: 11+)
Continued on next page
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A Spectrum of Fictional Characters, continued from page 24
Mockingbird by Kathryn Erskine (2011) Caitlin has Asperger’s. The world according to her is black and white; anything in between is confusing. Before, when things got confusing, Caitlin went to her older brother, Devon, for help. But Devon was killed in a school shooting, and Caitlin’s dad is so distraught that he is just not helpful. Caitlin wants everything to go back to the way things were, but she doesn’t know how to do that. Then she comes across the word closure--and she realizes this is what she needs. And in her search for it, Caitlin discovers that the world may not be so black and white after all. (RA: 10+) Out of My Mind by Sharon M. Draper (2012) - Eleven-year-old Melody is not like most people. She can’t walk. She can’t talk. She can’t write. All because she has cerebral palsy. But she also has a photographic memory; she can remember every detail of everything she has ever experienced. She’s the smartest kid in her whole school, but NO ONE knows it. Most people—her teachers, her doctors, her classmates—dismiss her as mentally challenged because she can’t tell them otherwise. But Melody refuses to be defined by her disability. And she’s determined to let everyone know it…somehow. (RA: 10+) Rules by Cynthia Lord (2008) - Twelveyear-old Catherine just wants a normal life. Which is near impossible when you have a brother with autism and a family that revolves around his disability. She’s spent years trying to teach David the rules from “a peach is not a funnylooking apple” to “keep your pants on in public” -- in order to head off David’s embarrassing behaviors. But the summer Catherine meets Jason, a surprising, new sort-of friend, and Kristi, the next-door friend she’s always wished for, it’s her own shocking behavior that turns everything upside down and forces her to ask: What is normal? (RA: 9 - 12+)
Wonder by R.J. Palacio (2012) August Pullman was born with a facial difference that, up until now, has prevented him from going to a mainstream school. Starting 5th grade at Beecher Prep, he wants nothing more than to be treated as an ordinary kid— but his new classmates can’t get past Auggie’s extraordinary face. Wonder begins from Auggie’s point of view but soon switches to include his classmates, his sister, her boyfriend, and others. By undergoing a range of learning experiences with his peers, teachers, and family, August shows that it’s perfectly okay to stand out and that simple kindness can go a long way. Choose kind. This book became a feature film in 2017. (RA: 8 - 12+)
Looking for ideas for younger readers? Adults? We’re compiling a list of Spectrum Life Magazine reader favorites and invite your participation! If you have a favorite fiction book for youth or adults with an autism or disability theme that you’d like to suggest, please send the details to spectrumlife@ autismempowerment.org and your suggestion may be added to our website or featured in a future article!
Karen Krejcha is the co-founder of Autism Empowerment where she serves as Executive Director. She is Editor of Spectrum Life Magazine and content curator for the Spectrum Life website. Karen’s writing has been featured in Been There, Done That, Try This: An Aspie’s Guide to Life on Earth (Jessica Kingsley Publishers, 2014) and Chicken Soup for the Soul: Raising Kids on the Spectrum: 101 Inspirational Stories for Parents of Children with Autism and Asperger’s (2013). Karen was diagnosed on the autism spectrum in her 40s, after the diagnosis of her two sons, Justin and Ryan. She has been married to John for over 25 years and is devoted to promoting a culture of acceptance and empowerment within the autism community.
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education KNOWLEDGE TO EMPOWER FAMILIES AND INDIVIDUALS
IN THIS SECTION A Letter for All Our Students ........................................................... 28 How to Get an IEP................................................................................... 30 Social Goals in the School Environment...................................... 32
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Can research really change the future of autism? You can SPARK research with one click.
Join SPARK – a free study with a simple mission: speed up research and advance understanding of autism. Individuals with autism will receive gift cards valued at up to a total of $50 for participation. To learn more about SPARK and register online, visit www.SPARKforAutism.org/OHSU
503-974-6478 | SPARK@ohsu.edu SPARK: Simons Foundation Powering Autism Research for Knowledge ©2018 Simons Foundation SPARK Primary Investigator: Wendy Chung, MD, PhD • Protocol Number: 20151664 • Western Institutional Review Board
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EDUCATION
A Letter For All Our Students You are so much more than just a name and grade.
By Traci Johnson, Leadership Teacher, Shahala Middle School
Although there are many amazing educators in our school system, there are certain teachers who are gifted with an ability to teach life lessons that transcend the classroom and positively transform the lives of the students they teach. A few weeks before Spectrum Life Magazine went to press in Vancouver, Washington, local students were taking Washington State Assessment tests in subjects like English Language Arts, Math and Science.
Although the letter was tailored toward Mrs. Johnsonâ&#x20AC;&#x2122;s leadership class, it is truly a letter dedicated to all our students and their parents too. Spectrum Life Magazine and Autism Empowerment heartily thank Mrs. Johnson for allowing us to share this letter with our readers.
Photo courtesy of Traci Johnson
Knowing that tests can place a lot of pressure on students no matter what their abilities, Mrs. Traci Johnson, a Leadership
teacher at Shahala Middle School in Vancouver, sent home a letter of encouragement and reflection to her students. A copy of this letter arrived at the home of an Autism Empowerment staff member and school parent. After her son, a student at the school, read it, he felt relieved and empowered. After the parents read the letter, they cried tears of joy.
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Hey great and oh so AWESOME students of mine, In the next few days you will be taking the Washington State Assessment tests. I know that ALL of you have worked hard in your classes up to this point and will continue to work hard until the last day of school. Here, however, are some things that I want to tell you before you start these tests; each and every one of you is UNIQUE and SPECIAL and have talents, dreams, and personalities that cannot be tested “on a test”. The people who score these tests only have your name and grade and that is all. It is like judging how awesome Sponge Bob is based only on his name; really? A sponge named Bob, how dumb is that. The testers do not know that some of you speak two or three languages or that you love to draw. They do not know that some of you live with and take care of grandparents or younger siblings. They do not know that you can name every Marvel comic character, that you excel at a sport or are a Potter fan. They have your name and grade only. They certainly do not know that I learn stuff from you all every day and that you make me laugh. They do not know that you have many friends who can count on you to have their back or help them when they are down. They do not know that you are kind, trustworthy and interested in life, culture, history, fashion, cars, animals, sports, skiing, church, scouts and Kanye West… okay maybe not Kanye - but he does make us laugh! Most of all they do not know that every day you try to be the very best YOU that YOU can be. The test scores that you receive on these tests will only tell you one thing; what you have learned thus far in your life journey - that is all! It does not test where you are going, or what you are hoping for your future. There are many ways of being smart and you are smart in so many ways. I have gone to 15 years of college and you all teach me new things every day and I love hanging with you all. You are smart!!! So, as you prepare for this brain-busting frenzy, just remember to do your best; be patient with yourself as you try to remember. Do not stress, for this is just a blip on your radar screen of life and you will go far beyond this test in the end, for you are so much more than “just a name and a grade.” Love, The woman who is proud to get to hang with you every day, Mrs. J. Additional thoughts from Mrs. Johnson: When we asked if it was okay to share her work with Spectrum Life Magazine readers, here is how she responded: “I would feel honored if you wanted to share my thoughts, especially if you feel that it can help ease the stress for anyone involved in testing. That is why I wrote it and started handing it out about three or four years ago.” “I felt saddened that students were coming to school crying because they feel so stressed, or that they felt like they needed to skip out on an after-school activity (that they LOVED) in order to study more but also because we had a set of brothers who lost BOTH of their parents (within a month of each other) and THEY still were not excused from this ...it is pure craziness in the grand scheme of things. There are sooooooooooooooooooooooooooooo many more effective ways to test a child’s knowledge of something (a topic) without putting them through this...but unfortunately the person who signed my teaching certificate does not agree, so this is my silent rebellion of encouragement that it will be okay no matter the outcome, and that they will rise up higher than any test score in the end.”
“I love the quote from Esther Kim (an Olympian) who says, ‘There is more than one way to be a champion’ ...and I see champions defined EVERYDAY in my classroom, and none of it has to do with a test score. Even my own daughter who NEVER passed the Math portion of the WASL, went on to be a business owner-because she had grit, gumption, a love of learning and patience with herself. No test can ‘test’ that.” “Please let readers know that these are just my thoughts, not an expert’s, but just a middle school teacher who loves her students and always wants the very best for them, in everything that they do.” Although Mrs. J’s letter was written to all her 6th, 7th, and 8th grade students and not specifically to those in the autism community, it is very often students that fall outside of typical who struggle with testing and feel pressure at school to fit in. They need teachers who will accept them for who they are and will encourage them to grow their gifts and talents. They need allies and heroes and you, Mrs. Johnson are both. Thank you.
About Mrs. J: Born in Seattle, Traci Johnson has been married for almost 30 years and has three adult children and one grandchild. She always knew that she wanted to be a teacher but kind of took the long way getting there, first getting married and having a family and then going back to school in 2000 at the age of 33. She was hired to be a teacher in 2010 and is so thankful to be able to do what she loves. • The oldest of four children, she describes herself as a statistic child: childhood trauma, transient, divorced parents, very low income and not the best student, but she loved learning. She still does, which is why after 15 years of college she went back for more. • In her free time, she is a distance runner who enjoys playing soccer, sewing, watching movies and loves outdoor adventures like kayaking, hiking and mud runs.
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EDUCATION
How to Get an IEP What is the Individualized Education Program process? By Aaron Blackwelder What is an IEP? IEP stands for Individualized Education Program. It is a legal, written document designed for public school children who qualify for special education services. An IEP is developed by a team that includes school staff members, such as the special education teacher, the general education teacher(s), a school psychologist, and others such as speech and occupational therapists, depending upon the unique needs of the child. Parents are also part of this team and, depending upon the developmental level of the child, the student as well. This document contains goals for the child and is reviewed and updated at least once a year.
So, the main reason to get an IEP for a child with a specific learning disability is to help him or her to have access to the best possible education they deserve. It ensures that the needs of the child are taken into consideration as they navigates the educational system. Who can request an IEP? Any person who knows the child can make a referral for special education. Parents, school staff, grandparents, or anyone who has knowledge of the child may make a referral for the child to be evaluated to determine special education eligibility. Most often, it is teachers or parents who make the request.
A student must be eligible for special education services before an IEP can be written. According to the Individuals with Disabilities Education Act (IDEA), the federal law governing special education services, the team must determine that (1) the child has a disability and (2) the child requires special education services to participate and be successful in a general education program. Why get an IEP? The purpose of an Individualized Education Program (IEP) is to help provide an equitable education for children with disabilities. Many students qualify for special educational services. In the state of Washington, roughly 14 percent of students are on an IEP according to the Washington State Office of Superintendent of Public Instruction (OSPI). In a study done by the US Department of Education, in 2015–16, the number of students ages 3–21 receiving special education services nationwide was 6.7 million, or 13 percent of all public school students. Among students receiving special education services, 34 percent had specific learning disabilities. Each IEP is designed to fit the unique learning needs of the child. Just because a child has an IEP does not mean they will be in a special education classroom for the entire day. Most students on IEPs are immersed in general education classes. Some are in Honors and some are even in Advanced Placement classes. The purpose of the IEP is to help teachers consider the student’s need to access the content in the class in order to have the best quality education available. An IEP helps level the playing field for students with disabilities.
How can I make a request? If you feel your child will benefit from an IEP, it is important to start the process as soon as possible. You will need to make the request in writing. You can either write a letter or send an email. You should send the request to either your child’s general education teacher, principal, school psychologist, or a special education teacher. It is important to also send this request to your school district’s special education director at the district office and retain a copy of the written request for your files. What happens after the request? Submitting a written request is the first step in the process. Once the school district receives a request they must follow protocol. By law, the district needs to acknowledge they have received the referral and make a decision as to whether or not it will evaluate your child within 25 school days of receiving the request. After the district decides to evaluate, the parents will be notified of the evaluations the district will conduct. The school district must inform and receive consent prior to conducting their evaluations. It is important for the parents to read this document because if there are areas that need to be evaluated, the parents can request these. How is the decision made? Once the district has written consent from the parents, they will begin their initial evaluation. The evaluation Continued onpage next page Continued on next
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How to Get an IEP, continued from page 30
If a parent has additional information that is relevant to the evaluation, it should be provided to the school. Diagnoses from doctors, therapists, social workers, or other qualified evaluators can be considered. The entire evaluation process, by law, needs to be completed within 35 school days. How will I be informed? After the district has completed its evaluation, the parent will be notified and invited to a meeting to discuss the initial evaluation report. This report will list the results from all of the assessments, the data collected after reviewing records, and any information parents have provided. The district representatives will explain the results of the initial
evaluation report and make a determination about the child’s eligibility for special education services. What happens next? If it is determined that the child has a disability that needs special education services then they qualify, however, they will not begin until the parent signs consent. Once the consent is given by the parent, a team of teachers and support staff will draft and present the IEP within 30 days. Parents and students (depending upon cognitive ability) are encouraged to be present during these meetings. This meeting will initiate the child’s IEP. After the child starts the new IEP, the school will monitor the progress of the child. At any point, amendments may be made to the IEP. These amendments can be initiated by the school staff or by the parent. The team will then meet once a year to reevaluate the IEP. During these meetings new goals will be set and present goals may be modified. It is important for both parents and students (again, depending upon cognitive ability) to attend these meetings to both inform them and to allow for input into the new IEP.
Aaron Blackwelder is a high school English teacher at Woodland High School in Woodland, WA. He is married and the father of two boys with autism 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
Photo courtesy of Bell Studios
will address all areas of concern for the child in regard to his/her disability and will often evaluate other areas that may not be of concern. Areas such as cognitive, behavioral, physical, and developmental factors are assessed, along with other areas of that may be connected with the child’s disability. The district will consider an array of data to help determine the child’s learning needs.
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EDUCATION
Social Goals in the School Environment What is Appropriate for the IEP?
concise, measurable, and unambiguous. If the description of the goal is unclear, it will be difficult to track your child’s progress. This includes identifying measurable criteria, determining whether the child will do the task independently or with adult support, and deciding when progress on the goal will be reported. Appropriate Social Goals By Diane Wiscarson, Kelsey Coulter, and Jillian Hartze Parenting a child during their school years is a labor of love, and one could argue that the toil is far greater for parents of children on the autism spectrum. While it is, of course, critical that the child’s education be fulfilled, it’s also important that the student be given the support and encouragement he or she needs to navigate the socialemotional aspects of the public school setting. The centerpiece of a student’s special education is the Individualized Education Program (IEP). Beyond academics, an IEP should also have objective and measurable goals for each area of need, including social skills. Schools are required to provide a Free Appropriate Public Education (FAPE) to all students, and your child’s social development is part of that education. Ensuring appropriate social goals in a child’s IEP can seem daunting. How are IEP goals developed? How specific should my child’s goals be? Who tracks my child’s progress? These are common questions to carefully consider in light of your child’s specific circumstances. Developing Appropriate Goals First, identify your child’s current social skills levels and the current level of functioning for each skill. If the IEP team doesn’t have this information, the district needs to conduct an evaluation(s). It is important to have information that is both current and accurate. Goals outlined in the IEP should address your child’s specific needs, based on evidence gathered by the IEP team. For example, if evaluations identify that your child has difficulty initiating interactions with peers, the IEP should include a social goal and specially designed instruction (SDI) to specifically address initiation with peers. While an IEP must contain measurable annual goals, a goal might be broken down into several short-term objectives. The measurable annual goals are designed to be met over the year, while the objectives may break that goal into smaller parts and serve as stepping stones to the annual goal. The language of goals (and objectives) needs to be clear,
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Social goals span a broad range of interactions, and may include skills such as positive peer interactions, selfawareness, perspective taking, or conflict resolution. Goals can be affirmative actions on the part of the child, eliminating specific behaviors or responses, or learning to understand a new social concept. A reasonable IEP goal will always reflect your child’s specific social development needs. Some types of social goals are: Social-Emotional – Social and emotional learning goals can include how to respond to conflict or coping with overwhelming emotions. A goal might be to increase a child’s understanding of their own response to an action, situation, or person. The goal might also include a child considering and trying to use a different response or types of response, to change the interactions with other peers or adults at school. Social Communication – Social communication goals may relate to your child’s verbal or non-verbal communication, and how a child might better articulate needs, wants, or protests. A social communication goal can be worked on in the classroom or other less structured times at school, such as lunch or recess. For a child who struggles to have conversations with peers, the goal may focus on increasing peer interactions by initiating conversations among classmates. Interpersonal - Interpersonal goals relate to peer relations and interactions. A goal here might focus on increasing awareness of others’ perspectives in social situations, whether it be an adult or another child. Recreational and Classroom Actions – Social goals can be specific to an environment or activity. Differences in academic and recreational times at school can be spelled out in a goal description. For example, a goal here might focus on engaging in a peer-led activity during an unstructured time, such as recess. Measuring Social Goals: Present Levels / Baseline Data How will IEP goals and objectives be measured? The first step is to know what your child can do now. IEPs must include a “present level” of performance for every www.spectrumsmagazine.org
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Social Goals, continued from page 32 IEP goal. A present level is baseline data documenting your child’s current performance for each social goal – specifically and accurately. For example, if your child’s specific social goal is to initiate positive interactions with peers, a present level would identify how your child currently interacts with peers. This may include the emotional state when addressing peers, the frequency, or any other notable characteristics of your child’s actions. How often does your child initiate interaction? In what kinds of situations does your child initiate interaction? A specific present level ensures that accurate growth will be measured. Measuring Social Goals: How, When, and Who? The IEP must explain how your child’s progress will be measured – objectively and specifically. The IEP should also note when data on an IEP goal or objective will be collected and reported to the parents. Finally, the IEP states who is responsible for accurately tracking goal progress. How? – A social goal can be measured multiple ways and may include data, teacher observation, behavior checklists, and/or self-evaluation. The goal should always set out the criteria used to measure success. For example, if your child’s goal is to increase appropriate responses when peers initiate interactions, then it should be documented when a peer starts an interaction, and how the child responds. Data should be kept on the number of appropriate and non-appropriate responses. If the goal criteria is to respond appropriately 80 percent of the time, then data must be taken to determine how many of the responses are appropriate and how many are not. Quantifiable criteria and data are critical to be able to measure progress.
When? – How often data will be collected must be noted in the IEP. Goals about daily interactions with peers likely require daily observations. Alternatively, social goals that involve specific recreational times or classroom activities might be measured less frequently. Either way, the frequency and reporting requirements of goal progress must be clearly stated in the IEP, and regular IEP Progress Notes must be given to the family. Who? – Data collection varies, often decided by where the child is observed and the data collected. If data is to be collected in the classroom, this might be done by a teacher or classroom aide. If a goal involves recess or lunchtime, it might be a playground aide or designated adult in charge of that particular activity. Ask the IEP team who will be taking data and tracking progress, and then reporting that progress to the family and the IEP team. Ensuring Progress: The Role of the Parent as Advocate Each IEP team is different, but each includes teachers, administrators, and related service providers, as needed for the specific child. Every IEP team must include the child’s parents, and you know more about your child than anyone else. Explaining your child’s social needs and challenges during IEP meetings helps create social goals. Don’t be afraid to ask questions about the specifics, including information about measuring progress. If you’re unhappy with your child’s social goals, have questions, or don’t understand them, speak up! The input you provide as an advocate for your child shapes the IEP and helps ensure that your child’s social skills needs are met.
Diane Wiscarson and Kelsey Coulter are attorneys with Wiscarson Law, and Jillian Hartze is a second-year Willamette University law student currently interning at the firm. Wiscarson Law was founded in 2001 by Diane Wiscarson, who earned her J.D. at Lewis & Clark Law School in 1996. Wiscarson Law has since shepherded thousands of Oregon and Washington families through the region’s public schools and educational service districts on behalf of their special needs children. For more information go to wiscarsonlaw.com or call 503-727-0202.
Spectrum Life thanks Wiscarson Law for sponsoring Autism Empowerment's Game-O-Rama in April 2018! www.spectrumsmagazine.org www.spectrumlife.org
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health & wellness
Photo courtesy of Spectra Gymnastics
DEVELOPING A SENSE OF WELL-BEING AND WHOLENESS
IN THIS SECTION Spectra Gymnastics............................................................................35 Ask The Personal Trainer.................................................................. 39
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Catering to a Spectrum of Learners
By John Krejcha Sensory integration play. Fostering friendships. Improving physical and social skills. Tumbling. Play. Inclusion. Fun. Special needs gymnastics for athletes of all ages and support for families.
20 students in our program, and over time, we’ve grown to serve well over 100 students each month.
Welcome to Spectra Gymnastics in Beaverton, Oregon. Recently Spectrum Life Magazine spoke with Owner and Founder, Karissa Johnson to learn the story behind this nurturing environment for a spectrum of learners.
It’s actually a cute story of how we developed our name. When we opened the doors in 2014, we were on some very tight time restraints to launch our opening on time. Feeling stuck with what the best name would be, one day I put a clipboard and scratch paper out in our lobby area. We asked parents and students to write down their recommendations for a company name and at the end of the day, my co-worker and I decided together on SPECTRA. Because we primarily served children on the autism spectrum, we felt like SPECTRA would help us stand out in our local Autism community. We then developed our tagline, “Catering to a spectrum of learners” which I believe truly captures the specialized nature of the work we do.
Tell us a little about Spectra Gymnastics and how it was founded. Spectra was founded in July of 2014 by me (Karissa) after working with children affected by autism for several years prior. My first encounter coaching a child with autism in the gymnastics industry was about 15 years ago and it was through that initial experience that I realized how important INCLUSION was for children with special needs, including individuals with autism.
THERAPEUTIC
RECREATIONAL
So, I set forth to study Psychology and autism in college which led me to a fun and rewarding career in Applied Behavioral Analysis (ABA) therapy from 2008 - 2015. In addition to teaching ABA, I also worked at a local gymnastics academy during these years where I was honored to have an opportunity to launch a special needs gymnastics program in 2009. For a few years, my career focus shifted away from gymnastics and primarily to ABA therapy in 2010 where I was privileged to work among an incredibly talented ABA team led by Kristina Montgomery, BCBA.
Again, I developed close working relationships with my clientele and soon families encouraged me to get back into the gymnastics industry. So, I reached out to a local gym (OMEGA located in Beaverton) and proposed a partnership with them to provide some special needs classes at their facility. My offer was eagerly accepted and –little did I know that the time– that would be the beginning of launching Spectra Gymnastics. Our doors opened with just
SOCIAL PLAY
Why the name SPECTRA Gymnastics?
Do you have a personal connection to someone with autism? My personal connection with autism began with my amazing mom, who was a Speech & Language Pathologist for her entire career (and now happily retired). Growing up, my mom instilled in me the importance of treating all people equally, regardless of differences or perceived limitations. When I was 20 years old coaching recreational & competitive gymnastics, I encountered my first student athlete with autism. Immediately, I recognized that this child learned in a different capacity than the other students in my beginner class. That first class felt like a disaster, so I went to my mom seeking advice on how I can better teach this girl on the spectrum. My mom gave me some strategies to apply reinforcement techniques into the class, so next week I took her advice and things immediately improved! This was my first experience with inclusion in a gymnastics setting, although I didn’t remember it at the time. What will always remain in my memory is the tears of joy the mother expressed to me. She never thought it would be possible for her daughter to succeed in athletics like her “typical” peers. This initial experience has led to my fierce passion for inclusion. What inspired you to create a program specializing in athletes on the autism spectrum? My unique experiences and encounters as a professional both in the gymnastics industry as well as ABA therapy has led me to recognize how powerful gymnastics can be to individuals on the autism spectrum or with related disabilities and challenges. The constant encouragement and positive feedback of the parents validated to me that Continued on next page www.spectrumlife.org www.spectrumsmagazine.org
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HEALTH + WELLNESS
Spectra Gymnastics, continued from page 35
this line of work is important and desperately needed in the community. Through these experiences, I was able to create an inclusive and supportive environment where students on the spectrum can learn, grow and thrive. Through the vessel of gymnastics, we can help people regulate, meet their sensory needs, help teach communication skills, develop social skills, coach students through challenges and celebrate their successes, no matter how big or small.
manager will determine the amount of money they qualify for. We do not accept KPLAN at this time. To learn more about this, each family should contact their case manager or have their case manager call or email us at Spectra.
Is there a typical class structure or are they all individualized?
• FREE Parent Support group the 2nd Sunday of each month (childcare in our gym included for free) from 3:30 - 5:00 p.m.
Our classes all follow a typical class structure of a gymnastics class which often includes a group game or activity, structured gymnastics circuits including trampoline, bars, beam, rings & floor. It is during this class structure that we teach additional social & communication goals. Not all students fit the mold of this format, which is why we offer private lessons to allow our instructors to adapt and customize lessons to meet each person where they are at in their development. What age ranges do you serve?
What kind of programs and services does Spectra offer? We offer a variety of programs and services to the community!
• Specialized half-day summer camps • Individualized weekly classes • Sibling classes • Fostering Friendships - Classes teach, develop & practice social skills during gymnastics class • Parent’s Night Out monthly events (3rd Saturday each month from 6:00 - 9:00 p.m.) • Open Gym every Saturday 9:00 p.m - 12:00 a.m.
We don’t limit the age of people we serve. We currently work with individuals ranging from 2 - 26 years old. What is the price of classes and camps?
• Birthday parties • Coming in the fall of 2018: Preschool readiness program How about sharing some favorite success stories?
Classes are billed as monthly tuition ranging from $100 - $160 each month. Daily camps are $50 per day, and our specialized camps like Sensory Seekers and Foster Friendships cost $300 per week. Can eligible families use Oregon Developmental Disability paid services?
Photo courtesy of Spectra Gymnastics
Families seeking financial support through DD services would need to contact their case manager. We have accepted DD payments in the past, however, each family’s case
Most of all, I value the culture and environment that we’ve created at Spectra. We have built a safe space, both physically and emotionally for families. We are a special place families can access where it’s okay if your child has a meltdown. It’s okay if a student needs extra support transitioning. It’s okay if a child is having a hard day. We are here to help and support as best as we can. We celebrate the successes of our athletes rather than focus on perceived limitations. We exhaust our efforts to find ways to connect with each individual we serve and through those combined experiences, we’ve created a truly inclusive space for our community. We have countless success stories, but here are two: • Nearly four years ago, a mom walked into Spectra the week before we opened. She described her son to me— I believe he was 14 at the time— and inquired about how to sign up for private lessons. She asked me if I would allow their ABA therapist to be in the gym for behavioral support, and I happily agreed that would be best. So we began with a one-hour lesson once a week. At that time, gymnastics movements were very challenging for his body, as this athlete has a complex sensory system. We structured the class to include visual schedules, timers, and built in breaks every 10 minutes. This structure was crucial for his success. I remember teaching him a forward roll. Each time he would roll, he would appear disoriented from the movement. Taking it slow, we allowed him the recovery time he needed as well as physical breaks. This athlete is now 18 years old, attends Spectra lessons three days per week and is thriving now more than ever. He is doing cartwheels, handstands, dive rolls, and many other impressive skills on a weekly basis. His progress inspires us all as he continues to grow and develop. This guy is all smiles every time he walks into the gym. Continued on next page www.spectrumsmagazine.org
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Spectra Gymnastics, continued from page 36 • I met with a family a few years ago who had a child with Sensory Processing Disorder. The parents were concerned about his social development as preschool and kindergarten would soon be approaching. During the initial evaluation, this child refused to come near me, as he had developed a fear of unfamiliar professionals. I recommended we begin in private lessons and work up to a Fostering Friendships class over time, to allow the child time to build trust with the Spectra staff and to teach him the skills necessary for social success in a group setting down the road. The initial classes entailed the child running circles around the gym pretending he was a firetruck— again, keeping a very safe ten foot distance from me. Slowly I was able to join into his play schemes which we built up to shared imagination activities together over time. The trust we built allowed me to begin teaching this child gymnastics skills, as he would finally allow me to physically assist and spot him as needed. This process was crucial to his future success. Within about six months, we placed this child into a small Fostering Friendships class where we was able to enjoy learning with age-appropriate peers. This child has now advanced through two levels of our Fostering Friendships classes and is thriving at his current school. It is so special to be an important part of helping a family and child prepare for school readiness through our programming. What are your goals for Spectra for the future? I see many important things happening in the future. We are working to fill in service gaps to the best of our ability. My goals for Spectra include: • Training other professionals both locally and globally on how to set kids up for success. I’ve already had the honor to present lectures and workshops to others in the gymnastics industry nationally and internationally. I want to continue this movement of education and advocacy. • Opening additional locations in our community as the demand for our services increases. • Continuing to add in services for underserved populations such as teens and adults. • Continuing to advocate for inclusion. How can Spectrum Life readers get started with Spectra Gymnastics? Our intake process is simple. Call or email us to schedule an initial FREE consultation and skill evaluation. This process typically takes 30 minutes in the gym and includes play time in the gym as well as time speaking with the parent or caregiver to identify specific goals for each athlete. During that time we will recommend the best class placement options for each participant. Call us at (503) 754-9794. Email us at karissa@spectrapdx.com. We are located at 8344 SW Nimbus Avenue in Beaverton, Oregon. To check class schedules, camps and other programming, please visit: www.spectrapdx.com.
INSTRUMENTS
BALLET ACADEMY
Classical Ballet ages 3 -18 Contemporary and Jazz ages 8 & up Adult open ballet Equipped to give the next generation confidence, passion and discipline Special needs classes available for all abilities
Register in advance at: www.instrumentsacademy.com or call 971.413.2730 19077 S Beavercreek Road Oregon City www.spectrumlife.org www.spectrumsmagazine.org
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HEALTH + WELLNESS
Ask the Personal Trainer Your Fitness Questions Answered By Ryan Lockard, CSCS, CFNS In each issue of Spectrum Life Magazine, Health and Wellness expert, Ryan Lockard answers reader questions about health, fitness, nutrition and athletic training for youth and adults on the autism spectrum. Additional questions are answered at our SpectrumLife.org website blog.
Answer: Yes, exercise will help you sleep. According to a poll conducted by the National Sleep Foundation, people that exercise reported getting a better quality of sleep compared to those who didn’t. The poll also found that exercising any time of the day will enhance the quality of your sleep.
Question: My tween daughter is sedentary and does not like to play outside in the summer due to allergies and fear of bugs. She is an only child and tends to play on her own and read a lot of books. We can’t afford a gym or swim club membership. What ways can I motivate her to stay active so that she’ll want to exercise and not just see mom as being on her case?
There have also been a lot of studies done on improving the quality of sleep in general. Here are four tips to help you fall asleep faster and sleep better.
First, you must show your tween that physical activity is important to YOU and make it a priority. It is hard for them to feel that exercise is important if they don’t see you being active. Their response to your suggestion of getting active could be, “But you never exercise. Why should I?” Lead by example and they are more likely to follow. Make exercise a part of your morning routine. Not only is this a great way to start your day, but it also provides bonding time with your daughter by doing it together. There are several exercises that you can do at home that require zero equipment. You can look up different programs on YouTube and find a video that both you and your daughter enjoy. Use the YouTube research and exercise to bond with your daughter and enjoy each other’s company. Looking for ways to increase her activity outside of the house? Use her interests to help guide family outings. Does she need a new book? Take her to a bookstore, like Powell’s in downtown Portland. Between walking from your car to the store after you park and the stairs in the store itself, you’re bound to get some good exercise. Or explore the awesome exhibits at the museum that is great for all ages, the Oregon Museum of Science and Industry (OMSI). Activity level is a concern for many families during the summertime. Start the conversation now with your child and create a plan that works for you. Whether that is exercising together in the morning or planning family activities throughout the summer months, each child and family will be different. Create an open dialogue with your tween, find out their interests and plan accordingly. Use exercise to bond with your child and prevent being the nagging parent. Question: Our family has trouble sleeping during the summer, especially when it’s hot. We’ve heard that exercise might be able to help. Is this true and if so, are there optimal times of the day or evening to exercise to help improve sleep patterns? How often do you need to keep the pattern?
2) Wash your sheets – This may seem like an obvious tip, but when was the last time that you washed your sheets on your bed? Sheets should be washed at least once a week in order to maximize your quality of sleep. 3) Open a window – Many of us have a tendency of sleeping with our bedroom windows closed to keep the heat inside, but it decreases the oxygen levels. Crack open a window or two and have a better night’s sleep. 4) Ditch the cell phone – Does your cell phone act as your alarm clock and sit next to your bed at night? Get it out of there and buy an alarm clock. The blue light that your screen emits can actually shift your circadian rhythm by suppressing your body’s melatonin. The problem might not be falling asleep, but if you wake up in the middle of the night and check what time it is on your cell phone, you become exposed to the blue light. Then as you fall into the rabbit hole of checking your social media accounts, emails, and other non-essential items at 2:30 am, you have exposed yourself to enough blue light to reset your melatonin levels and then you have a hard time falling back asleep. Create a “No Cell Phone” rule for your bedroom and invest in an alarm clock. Have a question you’d like answered? Email: Ryan@specialtyathletictraining.com or spectrumlife@ autismempowerment.org. You may see your question featured in a future issue and on the SpectrumLife.org website! Ryan Lockard is the founder and head trainer of Specialty Athletic Training, a personal training company located in Portland, OR and Vancouver, WA, that specializes in fitness programs for children and adults with special needs. He is a Certified Strength and Conditioning Specialist (NCSA) and Certified Fitness Nutrition Specialist (ISSA). He can be reached at Ryan@SpecialtyAthleticTraining.com or www.SpecialtyAthleticTraining.com.
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Photo courtesy of Mary Rebekah Moore
Answer: This is a common question from parents as summertime approaches. School provides that consistent daily structure and parents typically scramble finding camps and other activities to fill their children’s day. However, many children that we see are like your daughter and enjoy being inside and independent for a variety of reasons. That doesn’t mean that they can’t be active, but parents may have to play a more critical role in providing that opportunity for activity and exercise. Here are some things that you can do to get your tween to be active without coming off as a nagging parent.
1) Create a nighttime routine – Growing up, we have a set bedtime routine as children. We take a bath (or shower), brush our teeth, and then lay in bed as we are read a story from our parents. This routine prepares your body for sleep. We tend to get away from having our nighttime routine as we get older. There are studies that show that taking a shower or bath before bed also helps you fall asleep. Try adding a shower or bath to your nightly activities before heading to bed.
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therapy THERAPEUTIC OPTIONS AND RESOURCES
IN THIS SECTION When The Best Therapy Is Love................................................................ 41 Spectrum Life Resource Directory is Live..............................................44 Upcoming Autism Empowerment Events.............................................46
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THERAPY
When the Best Therapy is Love
Stories from the Spectrum - Autism from an Autistic Perspective By Jasmyn K. Jones Dear parent of the child who just got diagnosed as having autism, May I share some advice? I ask because many won’t. This comes from an autistic parent’s perspective. • Love your child unconditionally. • Presume competence. • Promote autism acceptance. • Assume when you are talking in front of children, they are listening. • Your dislike of an autistic behavior may be internalized by your child as a dislike of them. • Remember that all children and adults are lifelong learners. • Assume that ANYTHING you post online may someday be read by your child, her peers and future employers. (Yours too.) • Learn to enjoy what your child does and unlock a key to her world. • Get to know autistic adults. Autistic adults can be quite a prolific group online. • Teach your child to advocate and include him/her in their IEP meetings. • Know that it is common for autism to run in families genetically. • Remember there is no shame in seeking counseling for yourself. • Encourage your child’s faith journey while you are strengthening your own. • Befriend yourself and make dedicated time each day for grounding. • Continue to educate yourself. You will be visiting a lot of health professionals over the next few years. Many of them do not have extensive specialized training with the vast intricacies of how autism presents itself in boys, girls, teens, and adults. You will hear or read a lot of advice from autism parents over the next few years. Remember, their experience is only with their own child and although their advice may prove invaluable, what works for one child may not work for another. It’s good to have peers you can turn to but if you’re meeting those peers in person, make sure they are also uplifting influences for your child. What do I mean? Well, sometimes autism parents get together to chat for things like playdates and such and then they’ll start venting right in front of the children, whether it’s their kids or someone else’s. So not cool. Kids hear and internalize. They pick up on raised voices and rude tones. They want to please their parents and get hurt or embarrassed when they hear things about
their inability to toilet or the meltdown they had at school. They get sad or think mom or dad hates them when they complain in front of them how they never get a break because of their kids. (Please don’t give your kid a guilt trip. They’ll have enough on their own.) So be careful. The mental health and self-esteem of the beloved child you have been entrusted with is at stake. When you need to vent, do it away from the kids. Don’t talk badly about your spouse in front of them and if you need to see a mental health counselor for you or your family, do it sooner rather than later. Doctors tend to operate from a deficit model (i.e., the medical model of what is broken or needing fixing) and may suggest things which put you in a panic mode thinking if you don’t do xyz for 30 hours a week and buy xyz supplement or do xyz treatment, you’re going to somehow miss out on an important window that is going to close for your child forevermore. Hogwash. It is not for me to determine the best treatment for your child but my advice for you is that when you’re interested in learning about a particular type of treatment, that you seek out opinions from people who have had the treatment in the past. Love your child. Don’t try to “fix” him. Help your child with skills in a way that works with her neurology and not against. Finally, remember that people with lived autism experience are often willing to provide well-needed perspective on what will work for them and what might not. When you’re working with doctors, teachers and other service providers, ask if they ever seek autistic input from adults and if not, why? Mom and Dad, you have a child with a lot to offer you. Remember that. Chances are, you will learn so much from your newly diagnosed autistic child that your life will transform. I’m rooting for you. Welcome to the autism community. Love, Jasmyn Jasmyn Jones is the pseudonym for an autistic parent who loves reading, writing, singing, dancing, comedy and watching her children grow into the incredible young adults they were destined to be. www.spectrumlife.org www.spectrumsmagazine.org
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Spectrum Life Resource Directory is Live Free Support for the Autism Community By Karen Krejcha On March 23rd, 2018, Autism Empowerment officially launched a new website to support Spectrum Life Magazine readers and the autism community. The website, www.SpectrumLife.org provides free online access to copies of all issues of Spectrums Magazine published from Fall 2013 through Winter 2017 as well as our new rebranded Spectrum Life Magazine issues, currently including our Spring and Summer 2018 editions.
• Financial and Legal - includes 11 subcategories 42 listings
In addition to being able to download each issue to your computer or read it online through our website, SpectrumLife.org also has an online section where you can read, enjoy and share previous and current articles.
• Products and Services - includes 11 subcategories and 62 listings
Online readers will appreciate extended versions of many articles with extra photos. We also have pieces that never made it to press due to space or timeliness. Audio podcasts and videos are also available as well as event listings from nonprofit organizations and service providers throughout Washington and Oregon.
Whether you are looking for a support group, psychologist, dentist, government agency or person who can diagnose adults or children, we have listings of service providers in the region who serve the autism community.
But what about the Resource Directory you promised? Is it there? Oh yes, it is! One of the most common questions we receive at Autism Empowerment and see in message boards for both autism parents and adults on the spectrum is “Where can I find a good (fill in the blank) for my son/daughter/self?” It’s a tricky question for us, because as a nonprofit organization, we don’t endorse, promote or guarantee the services or outcome of any one provider or type of therapy. We also know that treatment and support for autism and related conditions is not one-size-fits-all and that a doctor who is great for one person might be the wrong fit for another. In this case, we do our best to give the person who asks a list of a few choices or a direction to go to someone who might be able to provide better insight if it’s a field we’re not familiar with. We also recommend for people once they have a couple choices in mind to check out peer support groups and ask if others have direct experience or to see if the provider has online ratings through sources like Yelp or Facebook. Now, we’re excited to say that we have that capability too through our new online Spectrum Life Resource Directory at SpectrumLife.org! We currently have over 1,200 providers from throughout the United States listed in our directory with the majority coming from Oregon and Washington. Visitors can search by provider category and/or by location to make sure they return the results most relevant for their area. Categories and current listings as of June 2018 include: • Adult Services - includes 7 subcategories and 118 listings • Community Support - includes 14 subcategories and 273 listings • Education - includes 19 subcategories and 115 listings
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• Health and Medical - includes 16 subcategories and 253 listings • Interventions and Therapy - includes 20 subcategories and 197 listings
• Recreation and Camps - includes 12 subcategories and 98 listings
How detailed are the listings? There is a LOT of potential in this area! Right now we are in beta testing mode, ramping up the site and looking for input from Spectrum Life readers and service providers in our community, just like you! SpectrumLife.org has launched the directory by creating free basic listings for providers in Washington and Oregon and around the nation which include provider name, address, map, phone #, website, logo and a brief description of services. This is just the start and is a free service that we provide to adults and families who visit our website. We know that in order for a resource directory to be really usable and meaningful for our community, it needs to contain details from our providers, personalized information that they are best equipped to provide. So we have created a “Claim This Listing” feature for every listing account, giving a free opportunity for all providers to take charge of their own listings and the only thing it costs is their time and email address. Once a provider claims a listing, they have the capability to include details like hours of operation, insurance and payment methods accepted, year established, social media profiles, provider biographies, detailed descriptions of services and even the ability to add events and a twitter feed to their custom page on our website. This is a free business service we provide for service providers to encourage them to strengthen their connections with the autism community. So how can you afford to do this? Good question! As a nonprofit organization, Autism Empowerment relies on the generosity of individual donors, businesses and foundations to support the work that we do. We’re a small but passionate group and always looking for creative ways to partner with the community to raise funds. We would love your support! Continued on next page
Spectrum Life Resource Directory is Live, continued from page 44 One way we raise revenue to help print Spectrum Life Magazine is that we sell ad space. We also seek sponsorships to underwrite the cost of printing, and production. If you are interested in placing an ad or learning more about sponsorship, contact (360) 852-8369 or John at spectrumlife@autismempowerment.org. Another way that we will be raising revenue to support SpectrumLife.orgâ&#x20AC;&#x2122;s directory is through the offering of Featured Memberships at $99.95 per year and Premium Memberships at $249.95 per year to businesses in our directory. For the service provider that would like to support the work that we do, these memberships also come with great benefits and opportunities to promote their businesses. Available features include the ability to upload videos, photos, coupons and audio files. They can also post job
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listings, receive leads directly from their listings and receive and respond to customer reviews. For more information, see https://www.spectrumlife.org/join. We appreciate this opportunity to share our new website with you. As we just launched in March 2018, we are a continual work in progress. Our team is continuing to work behind the scenes to add and update new resources. If you have a favorite resource provider youâ&#x20AC;&#x2122;d like to see added, please contact us at spectrumlife@autismempowerment.org and be sure to tell your favorite providers to claim their listings so we can make the website better for all. To visit our Spectrum Life Resource Directory, visit www.SpectrumLife.org. Thank you!
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Upcoming Events • www.AutismEmpowerment.org For a full listing of upcoming events and meetings, visit www.AutismEmpowerment.org
Autism Empowerment and Spectrum Life Magazine appreciate your support: http://bit.ly/aedonate
JUNE Saturday, June 9th It Takes A Village Autism Conference Washington Autism Alliance and Advocacy 9:00 am - 3:00 pm Clark College 1933 Fort Vancouver Way, Vancouver, WA 98663 Autism Empowerment will exhibiting and Karen Krejcha will be offering a workshop on the importance of self-care.
JULY Sunday, July 29th AE’s 6th Annual Summer Potluck Picnic & Autism Serves Kids Care Club Food Drive 11:00 am - 3:00 pm Klineline Park 1112 NE 117th St., Vancouver, WA 98685
Autism Empowerment offers Support Groups, Social Clubs, Game Nights and Volunteer Service opportunities. Please see our website for dates and times and Facebook group page links. Ongoing Support Groups: • Adults on the Autism Spectrum (peer-led) • AWEtism We Embrace (Neurodiverse & NT) • Dads’ Autism Support Group • G.I.R.L.S. Group (Adolescence) • Parents of Tweens/Teens Support Group Ongoing Social Groups: • SW WA Tween and Teen Social Club (11 - 19) • Tween and Teen Book Club (11 - 19) 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
Inclusive fun for youth, adults and families! Therapy animal Rojo the Llama will be attending to spread joy and share carrot kisses.
Connect with us online!
Check www.AutismEmpowerment.org for details.
/SpectrumLifeMagazine /AutismEmpowerment
MONTHLY - Last Saturday
@SpectrumLifeMag @AutismEmpowermt
Regal My Way Matinee Sensory Movie 10:30 am showtime 7800 NE Fourth Plain Blvd. Vancouver, WA 98662
AutismSpectrumLife
Autism Empowerment
Call 844-462-7342 ext 433 in advance for movie that will be showing.
Autism Empowerment
Upcoming Dates: June 30th, July 28th and August 25th
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