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SpectrumLife PORTLAND AND SW WASHINGTON’S ONLY MAGAZINE FOR THE AUTISM COMMUNITY TM
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AVERY BROWN: EASYPUP DOG TRAINING THE LENS OF ACCEPTANCE AUTISM SOCIETY OF OREGON MY FIRST JOB AFTER COLLEGE NONSPEAKING BUT NOT UNABLE TRIPS, INC - ALL-INCLUSIVE VACATIONS
SUMMER 2019
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SUMMER 2019
contents
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Avery Brown: EasyPup Dog Training
FEATURED SECTIONS EDUCATION
ADVOCACY
8 10
The Lens of Acceptance a.k.a. the “Dad Story� Is Autism a Disability or a Difference? The answer is not so black or white.
26 28
Autism Society of Oregon A look at ASO programs in Oregon and SW Washington. My First Job After College Stories from the Spectrum: Lindy Treece
20 22
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Spectrum Life Resource Directory Spectrum Life Magazine helps you find autism-friendly service providers.
Recreation Travel and Adventure with Trips Inc. All-inclusive vacation tours for adults with disabilities. Planning a Birthday Party for Autistic Children We are all worthy of celebration and inclusion.
Challenging Measures of School Accountability Placing our children first.
HEALTH + WELLNESS
LIFESPAN
13 16 17
Nonspeaking but Not Unable IEP considerations for your nonspeaking student.
5 Tips for Exercising in Warm Weather Beat the heat while staying active. Ask Spectrum Life Questions focus on the America the Beautiful Access Pass and other autism-related periodicals.
therapy
39 44 46
Avery Brown: EasyPup Dog Training Service dog training and coaching. Autism, Death and Mental Health Therapy Utilizing autistic thinking to support grief. Upcoming Autism Empowerment Events Support Groups, Social Clubs and Special Events.
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FROM THE PUBLISHER
SpectrumLife TM
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SUMMER 2019 | VOLUME 8, ISSUE 2 SPECTRUM LIFE MAGAZINE TM A program of Autism Empowerment TM Karen Krejcha, Autism Empowerment, Publisher Dave Born, Graphic Designer My youngest son has been counting down the days until the end of the school year on his whiteboard. It’s a yearly tradition. Each day passed is one step closer to “glorious freedom” and the chance to sleep in past 7:00 a.m. on consecutive days. As a family of night owls, that countdown calendar looks pretty enticing right now. It’s awesome to have something to look forward to. Speaking of which... Welcome to the Summer 2019 edition of Spectrum Life Magazine! Also, Happy 8th Anniversary to Autism Empowerment (June 3rd!) Spectrum Life Magazine is an autistic-led publication of Autism Empowerment, a 501(c)3 nonprofit organization devoted to enriching and empowering the lives of youth, adults, and families both in the autism community and the world at large. Our desire is to support all age and ability levels, promoting a culture of health, opportunity and inclusion from birth throughout the lifespan. We believe people are stronger individually and collectively when each of us has what we need to be able to fully participate in community life. How do we do work toward that vision? Each of us gives and does what we positively can when we have the capacity and battery life to do so. Whether a person identifies on the human spectrum, the autism spectrum or both, each of us has strengths and gifts to give! Our cover story this issue features autistic entrepreneur and service dog trainer, Avery Brown. See Avery Brown: EasyPup Dog Training on page 39. We also have interviews with Tobi Burch Rates from Autism Society of Oregon on page 13 and to get you in the mood for summer vacation, see Travel and Adventure with Trips Inc. on page 20. Topics in our Education section this time include Nonspeaking but Not Unable (IEP considerations for nonspeaking students) on page 26 and Challenging Measures of School Accountability on page 28 by placing our children before test scores and grades. New contributor and autistic advocate, Lindy Treece reflects on My First Job After College on page 16 while seasoned autistic advocate, Judy Endow ponders Is Autism a Disability or a Difference? on page 10. You also won’t want to forget Brian Tashima’s The Lens of Acceptance on page 8. It’s a story with life lessons for all of us.
Karen Krejcha Executive Director & Co-Founder: Autism Empowerment™ Editor: Spectrum Life Magazine™
Editorial Advisory Board: Amy Donaldson, Ph.D., CCC-SLP Laurie Drapela, Ph.D John Krejcha Tara O’Gorman, MSW Heather Parrott Brian Tashima Mailing address: Autism Empowerment P. O. Box 871676 Vancouver, WA 98687 (360) 852-8369 www.AutismEmpowerment.org spectrumlife@autismempowerment.org Autism Empowerment is a 501(c)3 nonprofit devoted to promoting a culture of acceptance and empowerment for children, teens, adults and families within the Autism and Asperger community. Autism Empowerment makes no warranty, guarantee, endorsement or promotion of any service provider or therapy option listed in this publication or our websites: AutismEmpowerment.org and SpectrumLife.org. This is a free community magazine created as a courtesy to the public. Autism Empowerment cannot be held liable for any action or decision based upon information found in this publication or our websites. It is the responsibility of individuals to discuss any therapy or treatment option with their care team. Every effort is made to ensure accuracy and verify information, however readers using this information do so at their own risk. No part of this publication may be reproduced or transmitted without prior written consent from the publisher, Autism Empowerment. © 2019 All rights reserved.
ON OUR COVER
This issue’s cover features service dog trainer, Avery Brown and his dog, Béla from EasyPup Dog Training. See our cover story on page 39. Photo courtesy of Brad Morris
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AUGUST 8-11 PUMPKIN RIDGE GOLF CLUB
What’s Happening! Official Tournament Rounds**
Thursday & Friday Gates Open .............................................7:00 AM Saturday & Sunday Gates Open...........................................7:30 AM
Golf, Grapes and Brews at The Grove on hole #12 Featuring the Northwest’s finest wineries and breweries!
August 8-11............................................................................ 10:00 AM
Family Day* presented by KinderCare Education First 250 kids in attendance receive a poster and gift compliments of KinderCare Education and the WinCo Foods Portland Open
Witch Hollow Practice Putting Green
Saturday, August 10 ............................................ 10:00 AM – 2:00 PM
Under Armour Junior Golf Clinic*– FREE Ghost Creek Driving Range
Saturday, August 10 ............................................... 2:00 PM – 3:00 PM
Breakfast at Pumpkin Ridge***presented by General Mills Witch Hollow Clubhouse Concessions
Sunday, August 11 .....................................................9:00 AM - Noon
Trophy Presentation & 25 Card Ceremony presented by Kraft Heinz Witch Hollow 18th Green
Sunday, August 11 ............................................................... After Play FREE PARKING ALL WEEK!
*FAMILY DAY AND JUNIOR CLINIC INCLUDES FREE LUNCH TO PARTICIPANTS 17 & UNDER **TEE TIMES SUBJECT TO CHANGE. VISIT WINCOGOLF.COM FOR UPDATES ***FREE TO WINCO FOODS PORTLAND OPEN TICKET HOLDERS
Visit WinCoGolf.com and select Autism Empowerment!
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advocacy EMPOWERING CHANGE WITHIN THE AUTISM COMMUNITY
IN THIS SECTION The Lens of Acceptance......................................................................................8 Is Autism a Disability or a Difference? .................................................... 10
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Free Resources... for Parents and Caregivers of Children with Autism from Seattle Children’s Autism Center
The world of autism spectrum disorders is constantly changing and we at Seattle Children’s Autism Center are eager to share with parents and caregivers the latest therapies, research, news and tips for families.
1. The Autism Blog
theautismblog.seattlechildrens.org We provide information that may be helpful for raising a child with autism. Posts are written by physicians, nurses, psychologists, and family resource staff who are knowledgeable about the diagnosis and the latest in treatments and therapies are primary contributors to the blog. Topics range from selecting a summer camp to sibling support to new research findings to our perspective on the latest news and information about autism.
2. Autism 101
Available in-person at Seattle Children’s or by teleconference Autism 101 is a 90-minute presentation providing information and support for parents and families of children recently diagnosed with an autism spectrum disorder (ASD). Topics include up-to-date, evidence-based information about ASD, behaviors associated with autism, autism prevalence, treatments available and resources for families.
3. Autism 200 Series
Available in-person at Seattle Children’s or by teleconference. Watch past lectures on our website. Autism 200 is a series of 90-minute classes for parents and caregivers of children with autism who wish to better understand autism spectrum disorder. Classes are taught by faculty from Seattle Children’s and the University of Washington and other community providers. Topics include transition to adulthood, early intervention and school support. Each class includes time for questions.
Learn more or register at seattlechildrens.org/autism or by calling 206-987-8080. For information related to setting up a teleconferencing site for the Autism 101 or 200 series in your community, contact James Mancini at james.mancini@seattlechildrens.org or 206-987-3481.
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ADVOCACY
The Lens of Acceptance (a.k.a. the “Dad Story”) By Brian Tashima This is a story about my dad. As I was growing up in Hawaii, we had what you could call a strained relationship. He would often do things that I didn’t quite understand, like stare at strangers in the grocery store or decorate the side of our family car with a bird made from pieces of reflective tape. He would also get very upset about what I thought were relatively minor annoyances, like when he sneezed more than three times or when soda manufacturers changed their cans from pop-tops to stay-tabs (an obvious attempt, he said, to poison the population by making us immerse the aluminum tab into our drinks). As far as I could tell, he also never really had any friends. There was one gentleman who I suppose my dad considered a friend, as they used to talk on the phone quite a lot. Only—from my perspective, at least—these conversations appeared to be mainly one-sided, as my dad would talk nonstop about all these ideas he had while the other guy patiently listened on the other end. Everything in our household had to function in a very particular and oftentimes peculiar way. For example, if you took out the garbage, you would have to change all your clothes before you could fully reenter the house because the “garbage fumes” would have “infected” whatever you had been wearing. Also, he hated to admit when he was wrong or had made a mistake, so when something didn’t go according to his (extremely specific) plans, he would blame it on whoever happened to be around, which was usually me or my mother. All of this led to a fair amount of arguments and strife. Needless to say, I was more than happy to move out of the house when college arrived and I could live at the dorms. I hate to admit that I didn’t mind putting even more physical distance between us when later, as an adult with a family of my own, I left Hawaii for the mainland. Years passed by and I eventually discovered that my young son was on the autism spectrum. Not having known anything about autism prior to that, I dedicated myself to learning as much as I could about his condition while also getting involved in the local autism community via the Autism Empowerment organization. I would communicate some of this information to my parents back home, especially once I started writing the Joel Suzuki series of young adult fantasy novels and becoming an active advocate not only for my son but for autistic kids everywhere.
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Then one day I thought about my dad and said to myself, “Hey…wait a minute.” Because besides the behaviors that I had considered to be quirky, he was also always a very smart and talented person. He could surf, he had a black belt in judo, he could fix cars—all of these things that I couldn’t do. He could also see details that other people usually missed (which is something my son can do as well) and oftentimes perceived events in such a way that it almost seemed like he was predicting the future. On top of that, he was an excellent high school biology teacher who developed a personal philosophy of education that was probably ahead of its time, one in which every student had an equal chance to succeed regardless of their background or level of ability. So, when I went back to Hawaii one year for a visit, I sat down with him and, in the middle of a conversation about autism, asked, “Do you ever think that maybe you’re, you know…?” And his answer was, “Oh, yeah. I figured it out.” As it turned out, after having read the information I’d been sending back, he’d self-diagnosed as being on the spectrum. It made a lot of sense. It explained so much. And so after that, with me viewing him through this new lens of acceptance, our relationship improved significantly because now I understood him that much more. I understood his behavior. I understood why we had all those fastidious household rules. I understood his challenges as well as his strengths. I looked at him and saw my son in him, and vice versa. Now, instead of getting upset when he does stuff like call at midnight and leave cryptic messages about my mom’s health failing (she’s fine) and then turning off their phone until the morning not thinking that I would be calling back right away in a panic, I just nod and smile (after confirming that my mom was okay, of course). Now we agree on many subjects that in the past we might have argued about, and some of the things he used to do actually seem rather brilliant in retrospect (the bird on the car was pretty epic). As an added benefit, this lens of acceptance has also improved how I view other people and the world in general. Whereas before I would have gotten all roadragey at someone who cut me off in traffic, now I just think, “Okay, maybe it was a mistake.” Or when I handcarry a misdelivered package to a neighbor who doesn’t say thanks and slams his door in my face, I think, “Okay, maybe he’s just having a bad day.” Because really, most of the time we don’t know what’s going on beneath the surface with other people, right? So I think it’s to one’s own benefit
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The Lens of Acceptance, continued from page 8
to show some understanding and empathy in cases like these, because not only does it help keep your blood pressure down, it helps make the planet a more positive place. It’s practicing what I like to call active acceptance, where—as opposed to passive acceptance, like when you allow yourself to be taken advantage of—you are making the choice to forgive and embrace others despite whatever differences and disagreements you may have. I wish we’d had the same amount of autism awareness and acceptance back when I was a kid that we do now. I think it would have made a big difference in my family’s life and in the lives of others as well. Because this isn’t just a story about my dad, it’s a story about everyone. Brian Tashima is the 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. He’s also the lead singer/guitarist of the rock band Second Player Score, a board member of Autism Empowerment, and father of two awesome kids, one of whom is on the spectrum. Reach Brian at www.joelsuzuki.com.
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ADVOCACY
Is Autism a Disability or a Difference? Not so black or white . By Judy Endow So many ideas in the larger autism community often become a debate. As an autistic adult, this black-or-white, choose-your-side sort of thinking is very neurologically friendly to me. I like clear choices. But I also believe we are often unwittingly duped into believing we need to choose a side only because the idea is presented as a dichotomous choice. “Is autism a disability or a difference?” is one of these questions posed as a dichotomous choice in the autism community. The way the question is posed gives the impression that there is only one correct answer. When Autism is a “Difference” Many autistic adults would like it if autism were recognized as a difference rather than a disability. Many in this group are the walking, talking autistics. We can go out in public by ourselves. Some of us are parents. We are your friends, neighbors, and co-workers. We might seem to be a bit odd, but we can fit in enough to at least be allowed a place in the world at large. Even so, being out and about in the community poses significant challenges. The sensory overload and neurological processing differences dictated by our brain along with ever-present challenges with communication and conventional social understanding are such significant differences that even though we can accommodate for them, we are usually exhausted from doing so by the end of the day. It seems to me that when we are able to be out and about in our communities unassisted by a hired person, we are often expected to look and act like typical people
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regardless of the challenges imposed by the neurological difference of our autism. Because we appear to be like others, our difficulties and needs are thought to be our own personal problems. Even though we have an Autism Spectrum Disorder diagnosis that by definition means we have significant difficulties in many areas of life, others often look at us and ascribe negative intentionality and character flaws to us. When Autism is a “Disability” For some of us, the way our autism plays out in our body means we are faced with numerous obstacles to overcome every day of our lives. We may need communication devices, occupational therapy equipment and to employ personal care workers. For those of us whose autism presents challenges with these kinds of needs – we understand the disability aspect of our autism. We often need a hired person to accompany us when we go out into the community or to support us so that we can communicate. In fact, we may require 24/7 support staff. And for some, our autism plays out in our body in such a way that people can see it as we approach! For us, people can see we need help. Rarely do others look at us and attribute our difficulties to laziness, lack of motivation, self-centeredness or any other negative character trait. But because our autism is so visibly noticed along with the significant support we often need, people make other sorts of assumptions about us. Our needs are so obvious that people do not always consider that we also have strengths and abilities along with likes and
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Is Autism a Disability or a Difference?, continued from page 10 dislikes. Often we are placed in menial jobs as adults (if we are even deemed capable of working) and our support staff is switched around as if people are interchangeable and relationships do not matter to us. We are not often seen as people who have preferences, desires, abilities, skills, and talents as the time and energy of others are focused on meeting the deficits and needs imposed by our disability.
And yet we somehow feel that we need to choose between disability or difference. Why is that? This article was originally published for Ollibean.com on June 20, 2014. It also appears on Aspects of Autism Translated at www.judyendow.com.
Negative Outcome of Choosing Disability OR Difference As an autistic person when I am asked to choose one – either “disability” or “difference” – I feel like I am being asked, in essence, which part of me I would like to ignore. When I choose “disability” it means my talents, strengths, abilities, and preferences are ignored. When I choose “difference” my very real difficulties and needs are not only ignored, but I am often blamed for what others consider my stubbornness in hanging on to negative “character flaws.” Might We Incorporate Both Disability AND Difference? What if we all chose both disability and difference? Would we then be totally ignored or totally supported? There it is again – another dichotomous choice posed as if it were a real choice! In the meantime, please know when you ponder whether autism is a disability or difference, this is a false choice sort of deal. It serves nobody well and has poor outcomes.
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.
Providing guidance & training on special needs 9414 NE Fourth Plain Rd., Vancouver, WA 98662 360-823-2247, en Español x103 www.peacenw.org
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lifespan
IN THIS SECTION Autism Society of Oregon............................................................................... 13 My First Job After College............................................................................. 16 Spectrum Life Resource Directory............................................................. 17
Photo courtesy of Tobi Burch Rates
ALL AGES AND ABILITIES
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LIFESPAN
Autism Society of Oregon Improving the Lives of All Affected by Autism By John Krejcha The Autism Society of Oregon is Oregon’s leading organization providing resources, education, advocacy, and support for individuals and families living with autism. Spectrum Life Magazine recently attended the 17th Annual Autism Society of Oregon Autism Walk in Portland, an event which positively brings youth and adults together for a day of family, fun, and community. We had a chance to connect with Tobi Burch Rates, Executive Director to learn more about how their organization is positively impacting lives within Oregon and Southwest Washington. Tell us about the background of the Autism Society of Oregon (ASO). The Autism Society of Oregon was founded in 1981 by parents of autistic children. We became an affiliate of the Autism Society of America in the 1990s but maintain our own Board of Directors which governs our organization. Our mission is to provide resources, education, advocacy and support to help improve the lives of everyone impacted by autism, throughout the lifespan, and throughout Oregon. Many of our programs are in SW Washington as well. Please tell our readers a little bit about your background and your own family’s autism journey. My husband and I are the parents of two wonderful sons, both of whom are autistic. They are now 14 and 19. I knew very little about autism, and most of it not accurate, when our older son was diagnosed 15 years ago at age four. Our younger son was diagnosed two years later when he was two-and-a-half-years-old. I’m originally from Washington, DC which is where both of my boys were born and diagnosed. Our sons are very different and really exemplify the truism that “when you’ve met one autistic person, you’ve met one autistic person.” Our older son graduated from high school last year with a regular diploma, was in general education classes throughout K-12, and is very independent. He has traveled in Europe alone and is going to Asia on his own, paying his own way from his job and his YouTube channel. By the way, we have a deal that I’m allowed to talk about him as long as I mention his YouTube channel called “KhAnubis.” (Editor note: KhAnubis has almost 40,000 subscribers!) Our younger son is completely non-speaking and needs significant supports to be safe. He communicates a lot though, using some sign language, some visuals on an app, and “significant looks.” As is not uncommon with autism,
he has recently developed a seizure disorder which has increased our concerns about his safety. He is in a selfcontained classroom at our local high school and will move on to the Youth Transition Program after completing 12th grade, eventually receiving a modified diploma. He is a sensory seeker and a happy, loving, joyful person. With appropriate supports, we expect that he will be employed and reach his full potential. How, when and why did you first become involved with ASO? We moved to Portland about 10 years ago and we reached out to the ASO to find help, resources and meet other families in our new community. We’ve been very happy to find all three through ASO. I volunteered as a Board member for ASO for two years, before becoming Executive Director in 2011. Is each Autism Society local and state chapter independent or are they a part of the national Autism Society? Each Autism Society is an affiliate of the Autism Society of America (ASA) and agrees to follow the practices and policies of ASA. However, each affiliate has its own Board of Directors which controls and governs that affiliate. Each affiliate raises its own funds and determines how those funds will be spent. All of the funds raised remain with the affiliate. In this way, each affiliate makes sure that it is meeting the particular needs of its community. The structure of the Autism Society makes each affiliate, including ASO, a truly community-based organization. Who does ASO primarily serve? Our mission is to serve everyone impacted by autism in Oregon, which is quite a large mission! We do not charge for any of our programs or materials, and there is no membership fee. We are open to everyone who can benefit from our services. What are key programs that ASO offers to support autistic individuals and their families? • Information and Resources – We provide information about autism resources to over 1,400 individuals each year to help them find services and supports. • Support and Activity Groups – We sponsor support and activity groups throughout Oregon for children, teens, and adults on the spectrum as well as parents, grandparents, and siblings. On our website, we list the groups by region. We list the groups we sponsor AND every group we know about in the region. Continued on page 14 www.spectrumlife.org
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Photo courtesy of Autism Society of Oregon
Autism Society of Oregon, continued from page 13
• “Take a Break on ASO” – A date night for parents or other primary care providers to give them a chance to relax and recharge. (see next question) • Scholarships and Needs Assistance – We provide gas gift cards to families or individuals who travel long distances for autism therapies and provide small gift cards to help make the holidays brighter for families or individuals in need. We also help to sponsor summer camps for autistic individuals throughout Oregon. • Workshops/Community Education – We present information on a wide range of topics that are important to the autism community. Workshops are held, without charge, throughout the state. We also provide free presentations on autism to anyone interested, including law enforcement, other First Responders, health care providers, employers, TSA, or wherever we can help. Our ongoing workshop series on Transition to Adulthood looks at issues such as Guardianship & Alternatives, Education, Developmental Disability Services, Employment, and Fulfilling Relationships. Workshops are live streamed for those who can’t attend in person, and we plan to post videos of the workshops as well. • Community Inclusion Events – Working with our volunteers throughout the state, we provide a variety of autism-friendly community inclusion events including Autism Friendly Santas, harvest festivals, swim nights and community picnics.
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Please share more about the “Take a Break on ASO” program. It sounds great! “Take a Break on ASO” is one of our most popular programs! This program provides an evening out – a “date night” – to parents of children on the autism spectrum. By “parents”, we really mean the primary caregiver so that includes foster parents or guardians, and parents of adult children. The ASO Board feels strongly that giving caregivers a chance to relax and recharge makes them better caregivers and improves the lives of everyone in the family. Under the “Take a Break on ASO” program, we provide a $25 gift certificate to the restaurant of the parent’s choice, two movie tickets to the theatre of their choice, and ASO pays $56 for up to four hours of respite care for the children in the household. The only “catch” is that we don’t have respite care providers to send out to families. The family is welcome to use anyone who they are comfortable leaving their child in the care of. Family members over the age of 18 are fine, and no background check is required. The care provider can also watch all of the children in the household, if appropriate, not only the autistic child. It’s not much of a break if all of the children aren’t being cared for! There is no waitlist and we offer the “Take a Break on ASO” program throughout the entire state of Oregon and in SW Washington. Each family can participate once per year. To sign up, please contact the ASO office at LoriB@AutismSocietyOregon.org or call 503-636-1676. Someone should get back to you within a few days with Continued on next page
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Autism Society of Oregon, continued from page 14 information and to get your choices for restaurant and movie theatre. We’ll provide the gift certificates and a form to process payment of the care provider.
“Sky’s the Limit” is a program where we partner with Alaska Airlines and TSA to provide a “dress rehearsal” for an airplane trip. It is generally held in late September but it depends on when Alaska Airlines has availability. We usually open registration about six weeks before the event date. Space is very limited, and we don’t overbook! We try to make the experience as realistic as possible. The event starts with the “travelers” coming to the Portland Airport and checking in at the Alaska Airlines counter. They receive boarding passes and then are escorted by TSA agents through actual airport security. (TSA has a wonderful and free program, called TSA Cares, where they will escort people with disabilities through security to their gate at any US airport. For more information, call (855) 787-2227 or go to www.tsa.gov/travel/passenger-support). They wait at the gate – realism! – then board the plane per the airline’s instructions. Once on board, the pilots taxi the plane around the tarmac. They will “rev” the engines up so the passengers can have the full sensory experience, but the plane does not take off! Back at the gate, they deplane and usually a goodie bag awaits them. We also have sensory toys during the event to help. We hear ASO has an upcoming pilot program around water safety, can you tell us more about this? We are also starting a Water Safety Pilot project using grant funding from Nike Community Foundation, Tualatin Hills Parks Foundation, the Brad Hornback Agency Scholarship Fund and the Hussman Foundation. The pilot program will be in Multnomah, Washington, Marion and Jackson counties. In those counties, we will provide scholarships for swim lessons for up to six children for up to 80% of the cost using swim instructors who are experienced in working with autistic children. They can take up to two sessions of swim classes in either private or small group lessons, depending on their needs. We will also host Autism Friendly Swim Events in each county providing sensory-friendly pool time for autistic people, their family, and friends. Finally, we will be creating a water safety video for the community.
Photo courtesy of Tobi Burch Rates
ASO also occasionally offers a “Sky’s the Limit” program at Portland International Airport. Please tell us about that.
Where are you located and how can people contact you? Here is our physical location but we serve statewide: 5100 SW Macadam Ave, Ste. 400 Portland, OR 97239 Call (888) 288-4761 or email: info@AutismSocietyOregon.org You can learn more about ASO at our website which is: www.autismsocietyoregon.org. We also invite you to follow us on Facebook both on our main and group pages: www.facebook.com/autismsocietyoregon www.facebook.com/groups/autismsocietyoregon What else is important for Spectrum Life Magazine readers to know? ASO is a small organization with a large reach and an even larger mission. All of our programs and materials are provided for free. As a non-profit organization that relies solely on private donations, we need support from our community whether it be as volunteers or through donations. Please contact us to see how you can help!
John Krejcha is co-founder of Autism Empowerment and serves as Program Director where he oversees Community Outreach. He also serves on the Editorial Advisory Board of Spectrum Life Magazine. John is married to Autism Empowerment co-founder, Karen Krejcha and is the father of two amazing children and their cat Zula. While John is the only one in his family who is not on the autism spectrum, he is also neurodiverse.
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LIFESPAN
My First Job After College And the lessons I learned
STORIES from the SPECTRUM Autism from an Autistic perspective
By Lindy Treece The month after my college graduation, I was starry-eyed and hopeful. I applied to every job I thought I could qualify for with a cover letter detailing my autism diagnosis and its co-occurring strengths. Looking back, I was a bit foolish to think my amazing personal story would automatically advance me to the front of the line. I had read on every employer’s website about their commitment to diversity and I may have taken that too literally at times. Then I tried the option of not disclosing my autism. I decided that if I were to be hired or dismissed, it would be based on my skills. I was elated when I received my first offer. I moved to Seattle to work for a large internet-based company. All my coworkers were around my age and the workroom kitchen was always stocked with cold beverages.
At this point, I thought it was best to disclose my autism to my manager in an attempt to resolve, or at least reduce, these difficulties. Part of me felt like a fraud when I finally disclosed. The company hired me for my knowledge, not knowing all the issues that would arise from having autism in the workplace. While I thought every misunderstanding was resolved, each one was probably documented in a file folder somewhere. Eventually, it added up. I was fired after three months on the job. The only explanation I was given from the agency was that I wasn’t a good fit for the team. Getting fired from my first job was by far the biggest disruption of routine I have experienced in my twenty-two years of life. When the routine of waking up every morning to work hard at a job that I loved vanished, it was quickly replaced with another routine: blaming myself. My autistic hyperfocus that allowed me to achieve high productivity was now playing a montage in my head for me every night, perseverating on all the possible reasons I was let go. This self-blame is not uncommon. Whenever you have something (such as autism) that deviates from the norm, you inevitably internalize that you are the problem. I’ve struggled to accept myself as I am and there are days when I still don’t.
About a few weeks into the job, I started having noticeable autism-related difficulties. For one, the open floor plan made for noisy acoustics and constant sensory overload. I would get reprimanded for taking directions too literally. I was even having difficulty with things I didn’t know I was having difficulty with. Most notably, my manager sent out a team-wide email asking us to refrain from talking so much during work hours. I only found out after the entire seating chart was rearranged that it was directed at me. How am I supposed to know to change something if I’m not told specifically?
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One lesson I took away from being fired: the hyperfixation on why will destroy you. It’s easy to get caught up in blackand-white thinking. It’s part of my autistic existence to try to make sense of things clearly without any shades of gray. There are things we can all do differently, but rarely is any social mishap entirely one person’s fault. It’s possible I wasn’t a good fit for the team, but it’s just as possible they weren’t a good fit for me.
Lindy Treece is an autistic activist in Vancouver, WA. She spent her early years in special education, and is now pursuing a Master’s in Social Work. She writes for her autism blog “Social Transgressions” at lindytreece.com.
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SPECTRUM LIFE
resource directory
www.spectrumlife.org
Spectrum Life Magazine serves youth, adults, and families in the autism community. We seek to partner with nonprofit organizations, businesses, support groups, educators and professionals from a variety of fields who desire to support our community in a meaningful way. If you are an autism-friendly provider who desires to connect with new clients, we can help you make those connections through print advertising, online advertising and nonprofit sponsorship opportunities. Please contact John Krejcha, Program Director at spectrumlife@autismempowerment.org or call (360) 852-8369. Spectrum Life Magazine and Autism Empowerment do not endorse, promote or guarantee the services or outcome of any one provider or type of therapy.
We currently list over 1,200 autism-friendly service providers from Oregon, Washington and throughout the United States. Some of the directory categories where you are able to search for providers in your region include: Adult Services Advocacy Assessment and Diagnosis Autism-Friendly Businesses Camps Caregiving Chiropractic Dentists Educational Support Employment Assistance Financial Planning Government Agencies Housing Legal Medical Professionals Psychiatrists/Psychologists Recreation Safety Schools Special Needs Trusts Sports and Fitness Support Groups Therapy and Interventions Transportation Travel The SpectrumLife.org website launched in March 2018 and is a continual work in progress. In order for our directory to become stronger and better known, we invite community members to share this valuable resource with their colleagues, friends and family members. Let’s work together to build our community stronger! Thank you for your support! To learn more about our Spectrum Life Resource Directory, please visit and bookmark www.SpectrumLife.org. If you have a resource you’d like to see added, please contact us at spectrumlife@autismempowerment.org or through our website. www.spectrumlife.org
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recreation
IN THIS SECTION Travel and Adventure with Trips Inc........................................... 20 Planning A Birthday Party for Autistic Children.................. 22
Photo courtesy of Trips Inc TM
INCLUSIVE WAYS TO HAVE FUN
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ALL-INCLUSI VE vacation
packages for travelers ages 18 and older with intellectual and developmental disabilities. Sign up NOW with Trips Inc.™, an award winning national travel company! www.TRIPSINC.com • 800-686-1013 www.spectrumlife.org
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RECREATION
Travel and Adventure with Trips Inc.™ All-inclusive vacations for adults with disabilities. By John Krejcha For the past 28 years, Trips Inc.™ has provided unique experiences and treasured memories for more than 16,000 travelers from all 50 states. Their foundation is based in special education and their group tour leaders each have at least 10 years of experience.
What is the price range of a package and what is included?
Their all-inclusive vacation experiences are so much fun that the majority of travelers return to vacation with them again. In the process, travelers often gain increased confidence, improve social, communication and life skills, make new friends, and create amazing memories for life.
• Expertly planned itineraries tailored to accommodate our trip participants.
Spectrum Life Magazine recently had a chance to interview Leslie Peterson, Executive Director of Trips Inc.™ and learn about the unique and fun adventures their organization offers adults with intellectual and developmental disabilities. Tell us about Trips Inc™ and when it was founded. Trips Inc.™ was founded in 1991 by Jim Peterson after he received his master’s degree in special education. Jim had worked as a director of adult services at the Devereux Foundation in California, in the special education department at the University of Oregon, and as a Special Olympics coach. He realized at the time there were not worldwide travel opportunities for people who experience disabilities. This population’s travel was limited to local camps or short day trips. Jim wanted people with disabilities and special health needs to have access to the same vacations other people enjoyed like Disneyland, Hawaii and international destinations! Do you or any of your staff have a personal connection with someone on the autism spectrum or with another disability? Over the past 28 years, we have taken over 16,000 people traveling around the world and about 25% of those folks are on the autism spectrum. One of our tour group leaders, who has been leading trips with us for over 17 years, has a son with autism. Traveler Derek Hadley has autism and started traveling with us at age 19 and that was 15 years and 18 trips ago! He’s a travel expert now! What kinds of all-inclusive packages can Trips Inc.™ provide? Where have you been? We have something for everyone! We do everything from a dude ranch adventure to city tours, theme parks, outdoor adventures, cruises, Hawaii, train trips and international destinations! We have kayaked in the Cook Islands, viewed the northern lights in Iceland, swam with dolphins in Hawaii and traveled by train through Germany & Austria!
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We have trips ranging in price from $1,395 to around $4,595 depending on the location and length of the trip. Our vacations are all-inclusive and include:
• All VIP entertainment, tickets, tours, and admissions—at no extra cost. • All transportation at the destination. • All hotels and lodging. We stay at 3-5 star hotels. • All meals at the destination. • All tips, taxes, fuel and service charges are covered. • Guaranteed tour price locked in at the moment your reservation is accepted. • A keepsake photo album filled with pictures from the trip and a cool Trips Inc.™ t-shirt. • A courtesy phone call before and after every trip to answer questions and give feedback. • Airfare based on departure from Portland, Seattle, and San Francisco. For all other cities, we’ll adjust the airfare portion based on where you are departing from. Trips Inc.™ is an accredited travel company with the Airline Reporting Corporation and the International Air Transport Association, and we have an on-staff accredited travel agent who will make all your travel arrangements. What is the size of the group traveling together and what is the chaperone to traveler ratio? Our average total trip size is about 20 travelers. During the day we break into small groups of around 4 - 6 travelers. We have a low ratio of 1 chaperone for every 3 - 4 travelers. All of our Tour Group Leaders have 10 - 29 years of experience leading our trips! Can travelers bring a care provider with them if they have extra support needs? We encourage independence and growth during each special adventure so travelers typically come without their care providers or families. Of course, if the traveler needs extra support for behavioral, medical or comfort reasons, they are welcome to bring someone with them! Continued on next page
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Travel and Adventure With Trips Inc.TM, continued from page 20
What are some of the obstacles that your travelers have faced when traveling and how were they overcome? For our new travelers, it’s a lack of confidence and fear of the unknown. It’s hard for anyone to take that first step into a new situation! We always see a big shift in a person from the beginning to the end of their vacation and it carries over when they return home. Every group that travels together has a certain bond with one another and they become one big family because of the friendship, support and mutual respect they experience. We’ve found that people then plan future vacations together!
have the vacation of a lifetime! We have rave reviews and recommendations from our travelers, their families, and caregivers if folks would like personal references. Plus, we have an amazing 80% traveler return rate! Where are you located? Here is our physical location but we serve nationwide: 735 W. 7th Ave., Eugene, OR 97402 • (541) 686-1013 You can learn more about Trips Inc.™ and view photo galleries on our website which is: www.tripsinc.com.
Please share a success story about one of your travelers. We had a new traveler with Autism (and OCD and ADD) from Austin, Texas who came with a long list of things we were told he couldn’t do. Everything from not tying his own shoes to not going on any of the rides in Disneyland. He was visibly shy the first night but that was quickly remedied when several of the other travelers visited his room and began telling him stories about their first trip experiences. He was so supported not just by us but by the other travelers who connected with him and showed him real friendship! He even did Splash Mountain with his hands up in the air screaming with joy, “I can’t believe I’m doing this!!!” Mom called us after the trip crying because he came home with such confidence and independence (including tying his own shoes!). She said he used to pretend he was sick to not go to school or work because he felt bullied. All that stopped and he began bringing his vacation photo album everywhere to show people what he had done!
We also invite you to follow us on Facebook at: www.facebook.com/tripsincspecialadventures What are your goals for the future for Trips Inc.™ ? We are always working to let as many people as possible know this service is available! We know travel has been identified as having a positive impact on people’s overall quality of life and we want to support our folks in being limitless in their travel dreams. Plus, the world needs to see and experience our travelers! What else is important for Spectrum Life Magazine readers to know? Just getting your basic needs met is not enough for a full life. We believe everyone should have access to all the amazing experiences travel brings, and that everyone is made to matter!
How would somebody get started to determine if this kind of travel is right for them? Give us a call at (541) 686-1013. We thoroughly screen each of our travelers before their trip to make sure they fit safely in our ratios and to ensure they are supported to “Jet Setting” John Krejcha is co-founder of Autism Empowerment and serves as Program Director where he oversees Community Outreach. He also serves on the Editorial Advisory Board of Spectrum Life Magazine. John is married to Autism Empowerment co-founder, Karen Krejcha and is the father of two amazing children and their cat Zula. While John is the only one in his family who is not on the autism spectrum, he is also neurodiverse. www.spectrumlife.org
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Planning A Birthday Party for Autistic Children We are all worthy of celebration and inclusion. Part One by Jennifer Costa
Bright lights. Loud music. Big crowds. Birthday parties for neurotypical children can often include experiences too intense for a child on the autism spectrum. However, with some simple planning, preparations, and accommodations, any child can be honored and celebrated each year on his or her birthday. While it varies from child to child, it may be easy to assume that your child cannot handle, or does not want, any type of birthday celebration. Sometimes this is the case, but sometimes it’s not. The logistics might vary from the norm, but a party can present a great opportunity for your child to interact with peers and have a great time. When appropriate, allow your child to be involved in the planning process. The level of involvement will vary, based on your child’s age, abilities and preferences. If your child has a special interest, favorite movie or treasured toy, this can be incorporated into a theme. When you can, offer choices and allow your child to be the decision maker. It’s okay to keep things low-key, inviting only a few close friends, family or those within the autism community. In fact, your child’s birthday party doesn’t have to be a “party” at all. Celebrating by doing a special activity, like camping or visiting a museum, can be just as memorable, and significantly less stressful, than a big party. Parties can be filled with a hodgepodge of new sights, sounds, tastes and smells and can lead to overstimulation. To make things easier for your child, consider alternatives. There are no birthday party “laws”. If flickering candles could irritate your child, don’t have them. If sound sensitivity is an issue, or if your child does not like to be the center of attention, skip the birthday song altogether. Presents can also lead to stress. There’s nothing wrong with opening gifts after the party is over, or asking for an alternative, like a gift to charity, if presents will simply be too much.
Use a professional. Sometimes it’s easier to leave the details to someone else, and planning an “event party” at a local hotspot can work out beautifully. Jerry Raymond, owner of Sky High Sports in Tigard, Oregon and also the father to a child with autism, has these tips for parents considering booking a birthday party at a special event venue: Be upfront. Talk to the staff at any potential venue and ask them if they have experience hosting parties for children with special health needs. Many venues are more than willing to offer advice on how to make their facility more compatible with the needs of your child. In some cases, music can be lowered, areas sectioned off, lights dimmed or distractions removed, to make the surroundings less overwhelming. Choose your date carefully. Weekends and holidays are busier, and multiple parties are often booked. Consider booking a party on a weekday, when the crowds are smaller and the staff is not spread as thin. Prepare to be flexible. Don’t forget to prepare yourself and your child for the unexpected. Cake orders are lost, guests don’t show and meltdowns do happen. Setting aside a sensory area where children can take a breather is a good idea. Prepare your child by explaining that parties are special and don’t happen every day, therefore there will be a change in their routine. Be aware that this might cause emotional distress and plan accordingly. Parties don’t have to be perfect to be worth the time. Plan carefully, be flexible and don’t forget to have a great time!
Consider the location carefully. How does your child handle transition? Trying something new, in an environment that’s unfamiliar can lead to high anxiety. If you are planning a party at a park, or other outdoor location, how will your child react to inclement weather? Also take into consideration the party guests: if there are other kids on the spectrum, be sure you have other parent helpers and are aware of any extra accommodations for party goers.
Part one of this article was originally published in the Fall 2015 print edition of Spectrums Magazine (now Spectrum Life Magazine). Continued on next page
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Planning a Birthday for Autistic Children, continued from page 22
Part Two: Inclusive Party Tips from National Inclusion Project It can be heartbreaking for a child, and their parents, to discover they were not invited to a birthday party or event because of their disability. Parents of typically developing children are sometimes worried about adapting a party to be inviting and safe for the child with disabilities. We do not see this as a lack of trying, but a lack of knowledge. Try these tips the next time you want to make your child’s birthday or event more inclusive: Take the extra step to invite the child and family personally. Add a handwritten note to the parent letting them know that you want their child at the event. Telling them how much your child values the friendship with their child will be touching and help open the door to inclusion. Offer some solutions to make it work. Parents with children with disabilities sometimes feel like they are intruding if they ask for special arrangements for their child. Parents of typically developing children can help by offering some solutions. See if these work for your next event: • Offer 30 minutes extra time before the rest of the guests arrive for special one-on-one time.
Ask the other parent how you can include their child. While it’s good to offer solutions, it’s also important to make sure that parents feel their child will thrive. Opening the door to more conversation about the event will make it all run smoothly. Include your phone number or email on the invite to start a conversation. Be okay with a “No” or a No-Show. Being a parent, we all know that life doesn’t always go as we plan. Sometimes things don’t work out for a myriad of reasons both in our control and out. If you are up for it, keep inviting the child and their family to future playdates to show how much you value that relationship for your child. For more great ideas, download the free Power in Friendship Toolkit from the National Inclusion Project at bit.ly/powerinfriendshiptoolkit The National Inclusion Project is a non-profit organization, founded in 2003 by Clay Aiken and Diane Bubel, dedicated to promoting the inclusion of children with disabilities in activities with their non-disabled peers. For more information, visit www.inclusionproject.org.
• Modify activities to be inclusive for all children, and share your plans with the parents. • Encourage the parents to stay for the party. It doesn’t have to be a drop-off party for everyone. • Share a flexible schedule. Offer the option to show up late and leave early to the party. www.spectrumlife.org
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education KNOWLEDGE TO EMPOWER FAMILIES AND INDIVIDUALS
IN THIS SECTION Nonspeaking but Not Unable ........................................................... 26 Challenging Measures of School Accountability....................... 28
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EDUCATION
Nonspeaking but Not Unable: IEP Considerations for Your Nonspeaking Student By Diane Wiscarson and Taylar Vajda As all parents of nonspeaking students know, communicating with your child effectively can be challenging. Figuring out effective communication tools can greatly improve your child’s quality of life – academically, socially, and emotionally. Communication allows the expression of emotions, thoughts, and feelings, and the development of relationships. In the educational context, helping your nonspeaking child develop better communication skills via tools and strategies is a collaborative effort between the family, the child, and the school district. What does the school district need to do? School districts must provide all students with disabilities a free appropriate public education (FAPE) designed for the student to make progress on educational goals. Developing effective communication strategies is key to ensuring delivery of FAPE to nonspeaking students. Determining appropriate communication strategies depends on the individual needs and characteristics of each student. A thorough evaluation of your child serves as the foundation for putting supports into place. The evaluation process involves administering assessments and gathering information. Assessments also help eliminate assumptions made about your child. For example, a district may
improperly assume that a child who cannot speak is also unable to perform at grade level, which would likely result in an inappropriate placement or curriculum. After evaluations are completed, the district and parents will participate in an Individualized Education Program (IEP) meeting to review the results and use that information to develop an IEP. The IEP is where all of the communication strategies, systems, technology, instruction, and supports are identified. Once all of those are defined in the IEP, it is the district’s job to provide all of those communication tools, strategies, practice, and instruction to the student. How can school districts help nonspeaking children access education? The inability to communicate would negatively impact anyone in almost all aspects of life. Thus, it is important to develop an effective communication program for each child. The IEP team should look at how the student currently communicates, and then use the evaluations to determine current communication needs. Then, IEP goals should work towards efficient, appropriate, and increased communication. As a child’s communication increases, it will be important to expand opportunities across people, places, and experiences.
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Nonspeaking but Not Unable, continued from page 26 To make progress on these goals, districts must provide nonspeaking students with auxiliary aids and services if needed. Fortunately, in this era of technological advances, there are many communication devices and strategies for nonspeaking children. Some illustrations of aids/services that might benefit a nonspeaking child are a word/letter/picture board, a sign language interpreter, a portable device that writes and/or produces speech, a picture exchange communication service (PECS) or a telecommunication service. The best communication method is highly specific to the individual student. For example, a nonspeaking student could be presented with two choices and be asked to choose between x and y using picture cards. Nonspeaking children can also use sign language, puppets, or social stories. Parents can help create these “social stories” at home. Social stories are typically pictures of the child and photos of common situations, locations, or events. A social story might include a picture of the child, their bedroom, people in their life, lunchtime, or a classroom. Other children might need a “communication passport” or communication books and charts. A communication passport is one page that the child keeps on their person. The passport gives people they meet, including their peers, basic information about how they communicate. A book or chart might include various options for students to pick from throughout the day. A student’s communication book/chart might have pictures of the playground or the sensory room. The student can be presented with a choice and point to the option that they’d prefer. On the other hand, if fine motor skills or dexterity are a challenge for the child, then they may benefit from an Eyegaze or letterboard. Depending on the specific student, these communication devices allow children to either generate speech or have an aide read aloud. Certain devices, like the Eyegaze, can also integrate with cellphones, apps, and other programs as well, furthering a student’s ability to effectively communicate. Are there any other services or supports parents should consider? Assistive technology (AT) is frequently used to help nonspeaking children learn and meet their IEP goals. AT is broadly defined and includes many of the aids described above. Assistive technology can also include options such as
apps and devices/systems. Some examples of augmentative communication devices/systems include DynaVox, LinguiSystems, and Kaufman Learning Kits. Additionally, iPad and iPhone applications can also be used as effective AT. Apps such as iConverse, iPrompts, Proloquo2go, and MyTalkTools are all examples of available AT. If the IEP team does not adequately address your child’s AT needs, consider asking for an AT evaluation. The AT evaluation identifies your child’s strengths, weaknesses, and needs, and will often provide trials with different types of AT. If your child needs AT, the device or service must be listed in the IEP and provided to your child, at no cost, by the district. Finally, nonspeaking students often use behavior as a mode of communication as well. If your nonspeaking child’s behavior interferes with learning, a behavior assessment should take place to help identify the purpose a behavior serves for your child. Once the behavior is understood, the team can create a behavior support plan and behavior goals for your child, which will likely increase the child’s communication. What if the school district isn’t providing FAPE for my nonspeaking child? It is best to put any concerns about whether your child is being provided FAPE in writing to the district. If your concerns are not addressed, ask for an IEP meeting. There is no need to wait until the next scheduled meeting to address the problem. If these options don’t work, parents can request mediation with the school district, file a complaint with their state educational agency, or file a due process complaint. They could also file a complaint with the Office for Civil Rights or within the school district. These processes vary in time, money, and available outcomes. A lawyer can help families work through the legal processes and determine what might be the best route. Conclusion: Students who are nonspeaking have the same desire to communicate as everyone else, and every student deserves to be heard! Although nonspeaking students have unique challenges, start with a comprehensive evaluation to provide the IEP team with information. Then, use that information to set up an effective communication system to ensure your child is able to communicate and receives a FAPE.
Diane Wiscarson is founding attorney and Taylar Vajda is a law clerk with Wiscarson Law, the only firm in Oregon with a primary practice area of special education law for families. Since Diane Wiscarson founded the firm in 2001, Wiscarson Law has shepherded thousands of Oregon and Washington families through the region’s public schools and education service districts on behalf of their special needs children. Find more information at wiscarsonlaw.com.
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EDUCATION
Challenging Measures
of School Accountability
Placing Our Children First
By Aaron Blackwelder On March 4th, 2019, in an 84-13 decision, the Washington State House of Representatives voted in favor of House Bill 1089, championed by Representative Drew MacEwen, to delink standardized state test scores from graduation starting with the class of 2020. This is a bold move and a big win for our children, not because it lowers the standards for graduation but because it opens up the possibilities as to what graduation can mean. No longer is it based on a student’s performance at a single moment in time. Rather, it can be the measure of what a child has learned over four years and place the student at the center of graduation rather than a test. Though the MacEwen bill is a huge win for our students, state testing will continue to be the litmus test by which a school’s quality is measured.
Potential home buyers are not the only ones who see this data; voters are swayed by this information as well. Districts depend on local bonds and levies to help fund schools. Without this support, schools will fall further behind. School boards and administrators are quite aware of this and pressure students and teachers to increase testing performance in order to boost their test scores in order to secure votes to fund schools and attract home buyers and avoid the flight of families to other neighborhoods and schools. A continued emphasis on testing as the indicator of a school’s quality causes educators to feel compelled to sacrifice authentic learning activities on the altar of accountability. I have heard teachers tell me that there are units and projects they cut out of their school year to ensure students are prepared to pass the State assessment.
Recently, I wrote a blog post for Teachers Going Gradeless about the impact state testing has on our schools. State testing is currently the only metric by which a school’s quality is measured. In it, I share how our obsession with standardized testing is contributing to further inequities in education. Q: How is the quality of a school determined? A: Test scores. If you were to visit any State Superintendent’s website and check the school report card, the largest portion of the page is dedicated to testing data. When viewing the Washington State report card, testing data overshadows everything. Important data, such as graduation rates, are allocated to a small corner clumped with Unexcused Absence Rate in a section titled “Other Measures.” It is clear what the State values. This information is public and used by realtors to attract home buyers. Potential home buyers can visit either Realtor.com or Zillow, pull up the specs of any house, and find the ratings of “Nearby Schools.” When clicking on this option they will see school ratings compiled by GreatSchools on a scale of 1-10. The only factor that GreatSchools uses to measure the quality of a school is standardized test scores. Look at the bottom of the section and you will read in fine print, “GreatSchools Ratings compare a school’s test performance to statewide results.”
In his book What School Could Be, Ted Dintersmith describes an education system that challenges our students to tap into their creativity to address current world problems, relies on collaboration by developing teamwork, and personalized learning that taps into the child’s interests and curiosity. In this vision, teachers are no longer the sage on the stage who expect their students are passively receiving and regurgitating information. Rather, they are partnering with students by providing meaningful learning opportunities—challenging them to be makers and creators. Our children—especially those on the autism spectrum—have unique talents. They are naturally curious. They love to learn. They are creative and insightful—they just don’t fit the mold.
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Challenging Measures of School Accountability, continued from page 28 Our children need to be provided with opportunities that unleash their potential by allowing them to explore who they are and how they can contribute to the world. An obsession with standardization sets aside our children and ignores their potential by forcing them to fit into a pre-prescribed box which can cause them much anxiety and this anxiety can get in the way of their learning. As the parent of two autistic boys, I know how their anxiety impacts our family dynamics. My wife and I have had to cancel dates because one son is having a meltdown. We have fought with our children in order to get them out the door to go to school and then have to drive to the school to pick our children up because the stress of the morning made it impossible for them to participate in their classes. For many children on the spectrum, the day to day anxiety is debilitating. Standardized testing creates more unnecessary anxiety that can contribute to an autistic child’s negative attitude toward school. School should not contribute to our children’s anxiety. Schools should inspire.
What if report cards were a bragging tool? What if we allowed schools and students to share all the innovative work being done? How might it look? A report card could highlight that a child collaborated with a team to bring more awareness to bullying and assault in the school. It could boast about participation on the debate team. What about if a student spends his or her time tutoring others after school? How about if a child designs an app that could help students stay organized? Don’t these mean anything? I want to believe that the purpose of schools is to provide students an opportunity to explore and experience concepts and resources that will help them to find a passion.
School should challenge our youth to become the best people they can—people who will do a better job with this world than us when they inherit it. When we choose to equate quality with test scores, we ignore all the amazing things our children have to offer. And when we make test scores the goal, teachers, and administrators lose sight of what truly is important—the child.
and other programs to become more involved in our schools? In redefining measures of accountability, we give all students a fighting chance. Instead of worrying about raising test scores, administrators and teachers can explore ways to engage students in content that connects them with their community. Schools will be able to connect with local businesses, community programs, and other organizations who are aware of local needs. Schools can build partnerships that allow students to engage in a meaningful curriculum that meets both the needs of the student and those of the community. Schools could be instruments that unify diverse communities rather than instruments to divide them by drawing racial and economic lines. When we redefine measures of accountability, it allows our children to develop their unique needs and discover how they can fit into a world that has traditionally labeled them as different or less than. When we redefine measures of accountability it provides ALL children the opportunity to pursue their dreams. References: 1. Blackwelder, A. (2019) Redefining Quality: Working towards new measures of school achievement. www.teachersgoinggradeless.com/blog/2019/2/23/blackwelder-quality 2. Dintersmith, T. (2018) What School Could Be: Insights and Inspiration from Teachers across America. Princeton University Press 3. House passes MacEwen bill to delink standardized tests from graduation (2019) bit.ly/HB1089MacEwenbill
As parents, teachers, administrators, community members, and alumni, should we expect more from reporting systems? How would new methods of reporting impact the perception of our schools and impact teaching and learning? Would this type of reporting encourage community members such as businesses, churches, Aaron Blackwelder is a high school English teacher at Woodland High School in Woodland, WA. He was recently nominated for Washington State Teacher of the Year 2019. He is married and the father of two boys on the autism spectrum who have shaped him as an educator. He is passionate about creating learning environments for all students. In his free time, he writes his blog, “Thinking 101” where he shares his ideas about education. Visit: mrblackwelder.wordpress.com.
Photo courtesy of Bell Studios
School excellence needs to be redefined. School quality has a much broader scope. Why do we spend 180 days to prepare our children for a single moment in time? Shouldn’t we be preparing our children for life beyond school? At what point are we going to ask our children how they perceive the quality of their education? When are we going to ask their parents? Shouldn’t these be the metrics by which the quality of a school is measured?
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health & wellness DEVELOPING A SENSE OF WELL-BEING AND WHOLENESS
IN THIS SECTION 5 Tips for Exercising When It’s Warm ........................................32 Ask Spectrum Life ............................................................................. 34
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HEALTH + WELLNESS
By Ryan Lockard
Tips for Exercising When It’s Warm Beat the heat while staying active
Living in the Pacific Northwest, we experience true weather seasons throughout the year. Each season has its own pros and cons. Summertime is a beautiful time to be in the PNW and is my favorite season. Just thinking about summer makes my nostrils flare with the anticipation of BBQ in the air. However, not everyone loves the sun and heat of summer. The heat can be overwhelming at times and can make it hard to get outside and exercise, leading to many days in the air-conditioned house living a sedentary lifestyle. Sound familiar? Here are five tips to help you stay healthy and active as you beat the heat this upcoming summer! Get your steps in – Go for a morning walk or run. Exercise is a great way to start your day and you’ll avoid the heat by going early. Enjoy walking but not a morning person? Go to your local mall or a department store. They are generally air-conditioned and large enough so that you won’t feel awkward walking the same loop a couple of times. How many steps should you try to reach? The National Strength and Conditioning Association recommends reaching 11,000 to 14,000 steps a day. Does that seem unattainable for you or your child? Start with a smaller goal that you feel is achievable and use that as your baseline. Increase that number by 250 steps each week until you reach the recommended daily steps. This may take months to reach and that’s ok! The most important thing is developing the habit of moving your body! Trust your heart – It is important to keep an eye on your heart rate as you exercise. The increased heat will be driving your heart rate up without exercise, so make sure that you are not pushing yourself to overexertion. It can also let you know if you could be working a little harder to reach your desired goals. Wondering what your target heart rate should be? Visit www.heart.org and type in “Target Heart Rate” for more information. Many of our clients have a difficult time understanding their body and self-regulating. It can be tricky as a trainer, or a parent, to know if your child is moving enough to increase their heart rate to the desired level. Heart rate monitors solve this dilemma. Not only is a monitor a great visual tool for you as the parent, but understanding the target number of beats per minute and seeing their heart rate in real time can also serve as a great motivator for the child.
Hydrate – It is important to drink water year-round, but especially as it begins to heat up. Your body will be naturally displacing your fluids trying to cool your body off, so make sure to drink extra water if you are spending time outside. The ideal amount of water that you should be drinking will vary based on your body and activity level, so your best indicator is your urine. If you’re not peeing clear, drink more water! Fuel up – Do you have a long day of activities planned? Make sure to fuel your body appropriately to sustain your energy level. You should be eating protein with every meal accompanied by a good amount of vegetables. Always carry snacks with you to prevent becoming hangry and turning into the Hulk. Nuts are a good quick snack that are packed with energy. Allergic to nuts? Try a protein bar of your choice. Monitor – Invest in smart technology that will help you stay on track. There are several great products out there that will help you monitor all the above. They all have different ways for you to stay motivated and consistent. For heart rate and step tracking, Fitbit has a ton of products that are high quality with different options for your needs. They have simple trackers that look like a bracelet (less invasive) to watches (our favorite for learning to tell time). You can find out more information at www.fitbit.com. The Fitbit app will also sync with another app that I recommend using to track your daily calorie intake, MyFitnessPal. MyFitnessPal is a free app that does a great job of helping you track your daily nutrition, hydration, and is very customizable based on your own fitness goals. It can scan bar codes, which allows you to input your meals with ease and accuracy. They also have a free online membership at www.MyFitnessPal.com that provides an opportunity for community connection. Looking for other tips or ideas? Please feel free to contact me directly with any questions at ryan@specialtyathletictraining.com. Say you heard about us in Spectrum Life Magazine.
Photo courtesy of Mary Rebekah Moore
Ryan Lockard is the founder and head trainer of Specialty Athletic Training, a personal training company located in the Portland Metro area and Central Oregon, that specializes in fitness programs for children and adults with special needs. He is a Certified Strength and Conditioning Specialist (NCSA) and Certified Special Populations Specialist (NSCA). He can be reached at Ryan@SpecialtyAthleticTraining.com or www.SpecialtyAthleticTraining.com.
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See Beyond Behavior
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Behind every behavior is a purpose. BEHCA® is designed to help families, educators, and support providers discover the underlying causes of behavior. Track daily observations, identify emotional triggers, and use shared data insights to effectively manage behavior over time.
Learn more and sign up for a free 30-day trial at https://behca.com
Listen to the See Beyond Behavior podcast on iTunes, Google Play, or Spotify, and check out the See Beyond Behavior book on Amazon and other online book stores!
SPECTRUM LIFE MAGAZINE READER SURVEY & CONTEST We’d love to get your feedback on our SUMMER 2019 issue! What did you like about this issue? Which articles did you read? How can we improve? Answer our quick online survey by August 31, 2019 and be entered to win a surprise package worth over $100! https://www.surveymonkey.com/r/SLMSummer2019 www.spectrumlife.org
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HEALTH + WELLNESS
Ask Spectrum Life Autism Resources for our Community
Each issue, Spectrum Life Editor and content curator, Karen Krejcha answers frequently asked questions about autism-related resources and topics in our community. Dear Spectrum Life: I love your print magazine. My family and I are learning so much and appreciate the energy and hope your stories bring. It’s hard to wait so long between issues. Currently, I am in a stage where I am wanting to read everything about autism and related disabilities that I can get my hands on but I prefer short pieces. So, I hope this isn’t considered rude since I love Spectrum Life but what other magazines do you recommend? Also, will you be changing your publication from quarterly to monthly soon? And will you ever be expanding nationwide? Please? ~ Sincerely, Julie in Hillsboro Dear Julie, Thanks for writing. We’re glad to hear you that you and your family are enjoying Spectrum Life Magazine and truly appreciate your feedback!
Whether that day comes this year or next remains to be seen but we’re always happy to shine a light on great work that other people, nonprofits and publications are doing.
We often wish our nonprofit Autism Empowerment had the financial means to fit more articles in each edition and to expand the number of issues we offer each year. There are so many people who contact us whose stories we would love to tell but we just don’t have the bandwidth to do so. People often see our publication and think we must have our own office space and dedicated staff that work on the magazine and website year-round but the reality is that we are a small and mighty grassroots nonprofit that is primarily volunteerrun from a home office. Although we’d love paid staff and office space eventually, right now working remotely keeps costs down and means more money is available for the other community programs and services we offer.
Here are four publications worth checking out:
So, as much as we’d like to make the publication longer and replicate in other regions, the time just isn’t right (yet!!). For now, we’re doing the best we can with the gifts we’ve been given and look forward to expanding when the opportunity presents itself in the future.
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ZOOM Magazine (Autism through many lenses) - For readers who appreciate that Spectrum Life Magazine is written by the autism community for the autism community, you’ll want to check out ZOOM. It’s a free magazine that is only available online, however if you sign up for their mailing list, they will send you downloadable PDFs of the publication. There have been 15 issues published since they founded in 2014 and all back-issues are available. Issue 15’s theme is Powerful Autistic Women with Guest Editor, Haley Moss. ZOOM is currently published through Geek Club Books, a nonprofit organization focused on innovative autism storytelling to change perceptions and end the stigma of autism. geekclubbooks.com/zoom-autism-magazine Continued on next page
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Ask Spectrum Life, continued from page 34 Autism in Adulthood from Mary Ann Liebert, Inc. publishers.Autism in Adulthood launched its first issue in 2019 and is a peer-reviewed journal dedicated to biological, neurological, psychological, cognitive, emotional, and behavioral research and scholarship on the most pressing issues affecting adults on the autism spectrum, from emerging adulthood to later life. Using original research, in-depth analysis, and interprofessional dialogue, Autism in Adulthood provides new insights and evidence to promote practice, systems, and policy change. This innovative journal integrates the contributions of autistic adults - as Editorial Board members, authors, peerreviewers, and readers - into the peer-reviewed literature. The Editor-In-Chief is Christina Nicolaidis, MD, MPH who is also the co-director of Academic Autism Spectrum Partnership in Research & Education (AASPIRE) in Portland, Oregon. As this is a professional journal, there is a cost per article or per issue but some of the articles are available at a limited time for free preview online. home.liebertpub.com/publications/autism-in-adulthood/646 Brain & Life Magazine (Neurology for everyday living) Brain & Life (formerly Neurology Now) focuses on the intersection of neurologic disease and brain health. Through diverse perspectives, Brain & Life seeks to connect with readers through news and stories not found anywhere else.
Brain & Life is a publication of the American Academy of Neurology and is available as a free mailed print or online subscription. They also have a robust online website with additional content and resources. Past issues from 2005 to present are available to read online in English or en EspaĂąol. www.brainandlife.org Exceptional Parent Magazine - Exceptional Parent (EP) has been serving families impacted by autism, disabilities and a wide range of special health needs for over 47 years. Their publication offers practical advice, emotional support and up-to-date educational information for families. The digital version of Exceptional Parent is distributed free of charge. The print magazine is distributed to selected healthcare professionals and is available by paid subscription for $95 per year. www.ep-magazine.com We hope this provides a great start! For additional options, we invite you to visit the Spectrum Life resource directory on our website. www.spectrumlife.org/products-and-services/magazines Continued on next page
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Ask Spectrum Life, continued from page 35
Dear Spectrum Life: My son was recently diagnosed with autism. We wanted to do some traveling this summer and I heard that he might qualify for a disability pass to get into national parks. How we can obtain this? ~ Thanks! Steven in Vancouver Dear Steven, The pass you are asking about is called an Access Pass. This is a free lifetime pass available to U.S. citizens or permanent residents of the United States that have been medically determined to have a permanent disability (does not have to be a 100% disability). An autism diagnosis does qualify. The pass provides admittance to more than 2,000 recreation sites managed by five Federal agencies. Here is some additional information we hope you’ll find useful. Benefits: • Honored nationwide at all Forest Service, National Park Service, Bureau of Land Management, Bureau of Reclamation, and US Fish & Wildlife Service sites charging entrance or standard amenity fees. • Valid for pass holder’s lifetime. • Admits pass holder and any accompanying passengers in a private non-commercial vehicle.
Documentation Required to obtain a pass: You must submit one of the following documents in person: 1. A statement signed by a licensed physician attesting that the applicant has a permanent physical, mental, or sensory impairment that severely limits one or more major life activities. 2. A document issued by a federal agency, such as the Veterans Administration, which attests that the applicant has been medically determined to be eligible to receive federal benefits as a result of disability. Other acceptable federal agency documents include proof of receipt of Social Security Disability Income (SSDI) or Supplemental Security Income (SSI) due to disability.
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3. A document issued by a state agency, such as the vocational rehabilitation agency, which attests that the applicant has been medically determined to be eligible to receive that agency’s benefits or services as a result of medically determined permanent disability. Showing a state motor vehicle department disability sticker, license plate, or hang tag is not acceptable documentation.
• At per-person fee sites, admits pass holder and up to 3 persons. Persons 15 and younger are admitted free of charge.
Other Important Details:
• Receives a 50% discount on some expanded amenity fees.
• Belongs to the signer only and they must be present for the pass to be used. Photo identification may be requested to verify pass ownership.
• Generally applies to • Single family campsites • Highly developed boat launches or swimming sites • Guided tours, movies and seminars (pass holder only) • G enerally does not apply to: • Additional campsites not occupied by pass holder
• Pass is nontransferable.
• I f the person receiving the pass is unable to sign, a parent or guardian may sign the pass holder’s name for him/her. • Concessioners may or may not honor this pass, according to the terms of their current permit.
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• Decals may be issued free for open topped vehicles at unstaffed sites. Decals are only valid when the owner has an accompanying valid pass. • Are not valid for any special recreation permits. How to Display:
• Flat fee for a group campsite • At staffed sites, show your pass to the booth attendant. • Hookups for water/sewer/electricity • Specialized interpretive services
• At unstaffed sites, use hang tag to display pass from rear-view mirror. Hang tags are available wherever you obtain a pass. • At per-person sites, present pass upon request. Continued onpage next page Continued on next
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Ask Spectrum Life, continued from page 36
How to Obtain a Pass and Hang Tag: Passes are available in-person at most national forest and grassland offices. In the Southwest Washington and Portland metro area, passes can be obtained at: Fort Vancouver National Park Visitor Center 1501 E Evergreen Blvd, Vancouver, WA 98661 www.nps.gov/fova Lewis & Clark National Historical Park 92343 Fort Clatsop Rd. Astoria OR 97103 www.nps.gov/lewi Oregon State Bureau of Land Management Office 1220 SW 3rd Avenue, Portland OR 97204 www.blm.gov/programs/recreation/passes Passes are also available through mail order, however you will need to download and print an application online at the U.S. Geological Survey (USGS) website at https://store.usgs.gov. You will need to include a photocopy of proof of citizenship or residency, documentation of disability and a $10 processing fee. Once the application package is received, the documentation will be verified and a pass with the pass owner’s name pre-printed on it will be issued to the applicant, generally within 10 - 12 weeks from the day the application arrives at the USGS.
Can I use my Access Pass at state parks or local city/county recreation sites? No. The Access Pass is valid only at participating Federal recreation sites. For information about America’s outdoor and cultural destinations in your zip code and across the country, you can visit www.recreation.gov. Their site provides tools and tips to discover new adventures through a one-stop shop for inspiration and ideation, trip planning, information sharing, and reservations. How can I find out the specific locations my Access Pass can be used? The USGS has a free list of federal recreation areas where passes are issued and can be used throughout the United States. It is a pretty large list but it is important to note that information does change and the list is not comprehensive. Please contact the site(s) prior to traveling to obtain the most current hours of operation and information on availability of all passes. https://store.usgs.gov/s3fs-public/PassIssuanceList.pdf For additional information, visit: https://store.usgs.gov/access-pass
Karen Krejcha is the co-founder of Autism Empowerment where she serves as Executive Director. She is Editor of Spectrum Life Magazine and a vibrant public speaker. Karen was diagnosed on the autism spectrum in her 40s, after the diagnosis of her two children. She has been married to John for over 26 years and is devoted to promoting a culture of acceptance and empowerment within the autism community and the world at large.
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therapy
IN THIS SECTION Avery Brown: EasyPup Dog Training...................................................... 39 Autism, Death and Mental Health Therapy.........................................44 Upcoming Autism Empowerment Events.............................................46
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Photo courtesy of Brad Morris
THERAPEUTIC OPTIONS AND RESOURCES
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THERAPY
Avery Brown: EasyPup Service Dog Training and Coaching
By Karen Krejcha Avery Brown’s dog training career started by accident, when he was researching how to train a service dog for himself. While going through the process, he quickly realized that he had a true passion and gift for training dogs, and wanted to help others with invisible disabilities achieve the same level of freedom. Spectrum Life Magazine recently connected with Avery to learn more about his journey and to find out about how EasyPup Dog Training can benefit members of our community. Hello Avery! Please tell our readers a little about yourself. Hi! I am a dog trainer here in Portland, and my specialty is service animals. I grew up on the beaches of sunny Southern California, but spent most of my time dreaming of the forest – which is one of many reasons why I moved to Portland this past October! I have my own business, EasyPup, and I also am an independent contractor for another private dog training company in the area. When I’m not working, I like to practice piano and hike the trails of Forest Park (my literal backyard) with my own dog. How did you first become involved in dog training? I actually started my dog training career unintentionally; I had been around animals all of my life, but it wasn’t until I began training a service dog for myself that I discovered how naturally it came to me. Many things led up to this. Many years ago, I experienced a traumatic event that was enough to push me from moderately-functioning to completely disabled. I was in college at the time, and had tried several different treatment options with very little success. One of my doctors suggested the idea of a service dog, and that night I went home and began researching. I found four different service dog organizations and attempted to contact them to see if they could help me. Unfortunately, none of them trained dogs for my specific needs. The only one that did exclusively worked with children and veterans. It was then that I decided to look for a dog to train on my own. I read every book I could find and spent about a year in preparation. After deciding on the breed and looking at many different puppies, I finally found my match: an affectionate but rambunctious nine-week-old Miniature American Shepherd. Boy, was she a handful! Together, we attended several classes at a local positive dog training facility and blew through the curriculum. The trainers there were so impressed that they actually asked me to apply when a position opened up only a few months later. To my delight, I joined the team as an agility trainer.
My first class was an absolute disaster. I was incredibly nervous, forgot everyone’s name, and tripped on the weave poles. It was the longest 50 minutes of my life! Even though I was terrified, I reluctantly forced myself to go back to work the next day. Fortunately, it wasn’t nearly as bad. Things picked up from there. I studied harder and got better with each class I taught. I learned people’s names and watched my footing around the obstacles. People in my classes were laughing and having fun. I still made mistakes, but I developed an ability to recover more quickly and gracefully. After that, my career took off. I became professionally certified and eventually left the company to start my own private practice. And now I’m here! Do you have a personal connection with someone on the autism spectrum? I am autistic, but I didn’t know this until just last month. It’s a funny story, actually. A local family contacted me about training a service dog for their 10-year-old autistic son. Whenever I work with a new client, I do as much research about their disability as I can before I meet them, so that I can get a better understanding of some of the challenges they might face. That information helps me come up with ideas for what things a service dog could do for them. One night, I came across an article written by an autistic person that felt eerily like an autobiography of my life. Intrigued, I spent more time watching seminars, reading articles, and listening to other autistic people share their own stories. The traits they described all seemed to be a perfect match to me. Like a stereotypical Aspie, I went out the next day and bought three different books on the subject, devouring them in just a matter of days. By the time I was done reading, I was delirious, and everything made sense. Continued on next page
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Avery Brown: EasyPup Dog Training, continued from page 39 feeling uncomfortable, even if he is panting and wagging his tail. It’s the way that he’s panting and wagging that gives me this information. Non-autistic dog trainers have to study for years to learn this vital interpretation skill, but I was fortunate to be born already fluent.
shortcomings, giving me long-awaited explanations for some challenges and frustrations in my life. It has also helped me recognize and capitalize upon my natural points of strength – dog training being one of them!
We understand you offer a program to help people train their own service dog.
Photo courtesy of Brad Morris
It felt as if a lightbulb had turned on in my head. I realized that I have lived my whole life unable to put a name to the way I experienced the world. Getting a diagnosis brought a sense of relief and joy, finally giving me language to describe what I had been going through. This new knowledge has allowed me to forgive myself for my
How do you think being autistic helps you train dogs? I believe that being autistic gives me the natural advantage of having a cognition that is similar to that of animals. Dogs and autistic people are generally very sensitive to our environments. This means that if a specific noise or light bothers me, it is very likely that the dog is upset about it, as well. Dr. Temple Grandin wrote about this in her book, Animals in Translation - Using the Mysteries of Autism to Decode Animal Behavior (2006), Harcourt. When it comes to dogs, almost all people know that a wagging tail means that they are happy, but it goes way beyond that. Autism gives me an acute perception which allows me to not only pick out minute details in a dog’s environment and body language, but also instantly interpret and understand exactly what they are expressing. A slight flattening of the ears, a lifted paw, a quick flick of the tongue, a turn of the head, the shape of the eyes, and a shift of their weight are all ways that dogs silently communicate. I can sense when a dog is
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Yes! Typically, the first thing that happens is someone contacts me through my website or via email. We then start a conversation about what their goals are and what they are looking to get out of training. If it is a good fit, we schedule a time to meet in person for a consultation. This is usually done at the client’s home. During the consultation, we discuss more in-depth what their needs are, determine what types of things they want their dog to help them with, and then come up with a training plan. I also assess the dog to see if he or she has the right temperament to be a service dog. After we have the consultation, if they choose to move forward, we start training. Clients have two options: • Day Training: I come and train your dog for you. I then teach you how to maintain the dog’s newly-learned behaviors. This intensive model alleviates much stress and responsibility of training and is great for those who lack the time or energy to do all of the work themselves.
• Pros: higher success rate, dog progresses more quickly, you can relax
• Cons: requires more frequent sessions to be effective Continued on next page
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Avery Brown: EasyPup Dog Training, continued from page 40
• Pros: you’re more involved in the training process, more cost-effective
• Cons: bigger time commitment, you shoulder the full responsibility of training by yourself
Photo courtesy of Brad Morris
• Coaching: I teach you how to do the training. I then come periodically to check on your progress and make suggestions as necessary. This independent style is geared towards people who like to do things themselves or already have training experience.
If the client does not have a dog, I also offer a service where I can accompany them to nearby breeders or shelters to help pick out the best candidate for them. What are the legal requirements for a service dog? Many people are surprised to find out that there is no official certification nor registration for service dogs in the United States. You don’t need an ID card, doctor’s note, fancy badge, or even a service dog vest*. To be legally protected under the Americans with Disabilities Act, or ADA, you just need two things: a life-limiting disability, and a dog that has been deliberately trained to help mitigate your symptoms by doing a specific behavior. That’s it! Of course, it’s not as easy as it sounds; viable service dog candidates must always be under control, free of aggression, and able to perform their job effectively in virtually any public place, at any time. That’s no small feat! *You may see advertisements for certification or registration cards online. These companies make a profit off of misleading disabled people into thinking that they need those products for public access. Don’t be fooled; these ID cards and “certification papers” are not only expensive, but also completely unnecessary and hold no legal value whatsoever. For more legal information about Service Animals and the ADA, visit: www.ada.gov/regs2010/service_animal_qa.pdf What’s the difference between a service dog, therapy dog, and emotional support animal? A service dog is a dog that is intensively trained to help their disabled partner. They can legally go anywhere their handler goes, with a few exceptions: private properties, sterile hospital rooms, and other places where the presence of the dog would be unsafe (such as in front of the lion exhibit at the zoo). Service dogs can be trained to assist with many different types of disabilities, too: guide dogs for the Blind, hearing alert dogs for the Deaf and hard of hearing, seizure alert dogs, mobility dogs, psychiatric service dogs, allergen or diabetic alert dogs, and of course, Autism service dogs! A therapy dog is a friendly pet that someone brings into hospitals, schools, and other places to make other people feel good. They usually have a fair amount of obedience training and are typically certified by an official therapy
dog association. Because they are helping the general public, not a disabled handler, therapy dogs are not allowed in public places unless given special permission. Emotional support animals (ESA for short) are pets owned by people with psychiatric disabilities. They can be any type of animal, from dogs and cats to ferrets, snakes, rabbits, and even birds! Not to be confused with psychiatric service dogs, ESAs are not trained to perform individual tasks to assist their owners; rather, the sole presence of the animal provides comfort. This means that they do not have public access rights, except for airplanes and some no-pets housing. To qualify for an emotional support animal, you must have a documented psychiatric disability and the animal’s presence must help relieve a related symptom. You must also have a doctor’s note, though this does not have to disclose your specific disability. Some disabled people start their puppy off as an ESA so that it can live with them in no-pets housing until its training has reached a level where they can become a psychiatric service dog. What things can a service dog do for someone who is autistic? These are just a few examples: • Calm meltdowns by lying on your legs or chest for calming deep pressure therapy. • Retrieve medication upon request and provide reminders during set times of the day. • Lead you out of a crowded room or building to prevent sensory overload. • Alert to rising levels of anxiety and interrupt harmful repetitive behaviors. • Find your car, keys, phone, or other important item. • Stand in a position that blocks strangers from entering your personal space. • Even use a special K9 phone to call 911 or a pre-programmed emergency phone number! Continued on next page www.spectrumlife.org
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Avery Brown: EasyPup Dog Training, continued from page 41 Are there certain breeds of dogs that naturally make better service dogs than others?
Photo courtesy of Brad Morris
When people think of an assistance dog, most people see an image of a yellow labrador or golden retriever in their heads. But that’s not always the case! Service dogs can come in many different colors, sizes, and breeds. Some breeds of successful service dogs I personally know include: Husky, Miniature and Standard Poodle, Chihuahua, Australian Shepherd, Japanese Chin, and American Bull Terrier, to name a few. I am a big believer that the breed of your dog should never be the only defining factor in consideration for service dog material; even within the same breed, each dog has a completely different personality. One yellow Lab is not the same as another! It is more about their individual intelligence and temperament that determines whether or not they will be successful. Many “unusual” breed dogs turn out to be great service dogs. What else is it important for Spectrum Life Magazine readers to know? Editor note: Avery from EasyPup provided us with so much fantastic content, we couldn’t fit it all in one issue. An extended length version of his interview with additional questions, answers, success stories and resource information is available now on our www.SpectrumLife.org website. How can Spectrum Life Magazine readers connect with you if they want to get more information? If you are thinking about the possibility of a service dog and live in the Portland or Vancouver area, I would love to meet with you. The best way to contact me would be through my website at www.EasyPupDogTraining.com. Be sure to mention Spectrum Life Magazine in your message! I also recommend checking out the many free resources on the Psychiatric Service Dog Partners website: www.psych.dog! As a parting thought, know that there is an amazing community of service dog handlers just like you out there who will support you on your journey, if you choose to take the first step.
Karen Krejcha is the co-founder of Autism Empowerment where she serves as Executive Director. She is Editor of Spectrum Life Magazine and a vibrant public speaker. Karen was diagnosed on the autism spectrum in her 40s, after the diagnosis of her two children. She has been married to John for over 26 years and is devoted to promoting a culture of acceptance and empowerment within the autism community and the world at large.
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THERAPY
Autism, Death, and Mental Health Therapy
Utilizing autistic thinking to support grief By Judy Endow The traumatic event of death is something we all struggle with from time to time over the course of our life. It is no different for autistic people. I am often reminded to be sure to identify exactly what the autistic person is struggling with when it comes to their particular circumstances.
picture of it in our mind. For example, if we have been told that we will go to the library after lunch, we might keep asking, “When will we go to the library?” Often, the function of this kind of question is not to learn the answer, but instead, serves as a way to hang onto that picture of the library in our head.
I am remembering a youngster who had a pet gerbil that died and he didn’t want to part with the beloved gerbil. Three days after the gerbil had passed, the pet was still in the little plastic exercise ball, which the youngster was carrying around with him.
I am learning that with traumatic events it is important to assess and match the autistic style of thinking (literal, concrete and think-in-pictures) of the particular person with the said traumatic event – in this case, the death of a beloved pet. When drawing out the scene where the youngster discovered the gerbil ball was no longer rolling across the floor and his mom told him the gerbil had died, I was able to discover his thoughts.
I was asked to help this child process his grief so the pet could be buried and the child could move on. I reviewed the grief process and in particular how it pertains to growth and development, but then discovered that wasn’t at all what I needed for this particular child. Since that long ago time I have learned it is important to first understand the autistic person’s perspective. Both the autistic
He thought that as long as he could see his gerbil, the gerbil was not in fact dead. This youngster did not have a way to hold the picture of his gerbil in his mind without actually seeing the gerbil – hence his need to carry around the now deceased critter. Furthermore, his reasoning informed him that everything he could see was real and that real things could not be dead. (Believe me – this sort of reasoning can make sense to a literal, concrete, think-in-pictures mind, even though it turns out to not be true at all!) This youngster’s mom brought in pictures the family had taken when he received the gerbil as a birthday present. The youngster also drew a few pictures of his pet. He was able to use the photos and pictures in place of the actual deceased pet. We practiced various scenarios where he put the hamster ball under a pillow and on the other side of the door so he could not see it and instead looked at the photo. It worked. He could remember his pet by looking at the photos and drawings instead of looking at the gerbil. Hidden Curriculum
thinking style and the often-unknown hidden curriculum of society will significantly impact how the problem is defined and what will impact a positive outcome. Autistic Thinking Style An autistic person is often very literal and concrete in their thinking. In addition, many of us are visual thinkers. As children, we often do not have a way to hold an idea or remember something without actually having that concrete item or to continue to talk about that thing so as to keep the
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Even after this, he was still reluctant to bury the gerbil. I discovered he was missing the practical information about what happens when a living thing dies. Most people automatically pick up this sort of information. It is assumed knowledge. Furthermore, because most people know this information, it is expected that everybody knows it. People with autism neurology do not automatically pick up all hidden curriculum in the world around them. Often, they need some direct teaching. In this case, the direct teaching was an explanation drawn out on paper. This explanation has been used with others over time so I will make it a general explanation so as to enable it to be useful to any reader who might find it helpful. It is written for mature understanding. It can be adjusted for less mature understanding. In addition, various religious or faith-based wording may be substituted. Continued on next page
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Autism, Death, and Mental Health Therapy, continued from page 44
A body is a concrete entity. The life force is what makes us be individual people (or our pets to be their individual selves). Without the life force of the essence or spirit, it is impossible for the body to live. Once a body has no life force it will begin to go bad – like food. This happens with all living things. For example, garden or plant food rots once it is disconnected from its life source – the ground, water, sunshine. In addition, animal food rots once it is disconnected from its life source – the live animal. Pets and human beings are part of the animal kingdom. Their bodies cannot remain stable, but instead, physically break down over time once the life force is no longer present. That is why we don’t save the body of a pet or someone who dies. It will only decay. The body is no longer useful. So, we bury or cremate it. That way we have a place to go to look at something (grave site or cremation urn) to remind us of the loved one who is no longer alive. We often remember the good things and great times we had by looking at photos and recalling fond memories.
To recap, I have learned over the years that utilizing the autistic style of thinking and searching for and then addressing areas of unknown hidden curriculum are imperative. Not using them are deal breakers. In fact, without this first step, all sorts of well-meaning, state-of-the-art counseling techniques and therapy modalities we rely on, while they generally work for most of the population, often do not produce the intended positive outcome for our autistic clients. This article was originally published for Ollibean.com on April 16, 2016. It also appears on Aspects of Autism Translated at www.judyendow.com.
Grief and Bereavement Resources for youth, adults, and families: The Dougy Center: The National Center for Grieving Children and Families www.dougy.org - help@dougy.org - 503-775-5683 The Dougy Center provides support in a safe place where children, teens, young adults, and their families grieving a death can share their experiences. For those in the Portland, Oregon metro area, the Pathways Program provides a safe place for families facing an advanced serious illness.
LK Finding Your Own Way to Grieve: A Creative Activity Workbook for Kids and Teens on the Autism Spectrum by Karla Helbert, MS, LPC This book explains death in concrete terms that autistic youth can understand, explores feelings that a person may encounter as a part of bereavement, and offers creative and expressive activities that facilitate healing. Adaptable for adults. https://amzn.to/2YnSZvG
LK How People With Autism Grieve, and How to Help: An Insider Handbook by Deborah Lipsky Deborah Lipsky is an autistic woman with substantial experience in emergency and trauma management, having formerly worked as a firefighter, emergency medical technician, and reserve police officer. Strategies surrounding cultural expectations for wakes, funerals, and other social events are included. https://amzn.to/2YgUNXc
LK Indiana Resource Center for Autism:
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.
Free downloadable visual narratives that explain death and associated routines. Topics include: When Someone Dies, My Special Person Died, Going to A Funeral, Going to the Cemetery and Going to A Visitation. - bit.ly/iidcvisualsupports
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Upcoming Events • www.AutismEmpowerment.org For a full listing of additional events and gatherings in our community, visit www.SpectrumLife.org www.AutismEmpowerment.org AUGUST Thursday, August 8th - Sunday, August 11th WinCo Foods Portland Open Pumpkin Ridge Golf Club 12930 NW Old Pumpkin Ridge Rd. North Plains, OR 97133 The WinCo Foods Portland Open is the final event of the Web.com Tour regular season. At the conclusion, the top 25 players of the season will receive PGA TOUR cards. Family Day Fun is August 10th. See ad on page 5. All-week tickets are $25.00 per adult and free for kids. 100% of the cost of each ticket purchased at this link will be donated to Autism Empowerment. bit.ly/wincofoodspdxae Saturday, August 24th AE’s 7th Annual Summer Potluck Picnic & Autism Serves Kids Care Club Food Drive Klineline Park 1112 NE 117th St., Vancouver, WA 98685 11:00 am - 3:00 pm Inclusive fun for youth, adults and families! Check www.AutismEmpowerment.org for more details.
SEPTEMBER Thursday, September 19th Give More 24! Online Day of Giving 12:00 am - 11:59 pm www.givemore24.org Give More 24 is an annual day of online giving to nonprofits based in SW WA that serve the USA. Please donate to Autism Empowerment and support Spectrum Life Magazine. For 24 hours, your giving goes further with matching funds and prize pool opportunities! THANKS!
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Autism Empowerment and Spectrum Life Magazine appreciate your support: www.AutismEmpowerment.org/donate
MONTHLY - Last Saturday Regal My Way Matinee Sensory Movie 10:30 am showtime, doors open at 10:00 am 7800 NE Fourth Plain Blvd. Vancouver, WA 98662 Call 844-462-7342 ext. 433 in advance for movie that will be showing. Upcoming Dates: June 29th, July 27th, August 31st Autism Empowerment offers Support Groups, Social Clubs, Game Nights and Volunteer Service opportunities. Please see our website for dates/times and Facebook group page links. Ongoing Support Groups: • Adults on the Autism Spectrum (peer-led) • AWEtism We Embrace (Neurodiverse & NT) • Parents of Tweens/Teens Support Group Ongoing Social Groups: • SW WA Tween and Teen Social Club (11 - 19) • Adult Game Nights - Quarterly Ongoing Service & Volunteerism: • Autism “Rocks” - Rock painting, hiding and collecting (All ages) • Autism Serves Kids Care Club (8 - 18) • Autism Serves - Volunteerism for all ages Connect with us online! /SpectrumLifeMagazine /AutismEmpowerment @SpectrumLifeMag @AutismEmpowermt AutismSpectrumLife
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Bridges is the only middle school in Oregon specifically designed for students with learning differences to reach their maximum potential—in a loving, nurturing atmosphere centrally located in downtown Portland. Our small class settings for 5th-8th graders incorporate individualized academics with social skills, therapies, and support that set the foundation for success. At Bridges, students learn another way forward. Our goal is to give students with learning differences the academic foundation, social skills and confidence they need to graduate ready to succeed in high school and in the community.
You can find us in the heart of downtown Portland at 2510 SW First Avenue, 97201. BridgesMS.org | 503-688-2922
Admission inquiries for the 2020/2021 academic year are now being accepted at BridgesMS.org. Space is limited. Preference given to 5th grade applicants. 47
As an Independent Apartment Community (IAC), Stephen’s Place offers positive living options for adults with developmental disabilities. fo With forty-one modern apartments, our focus is on community; empowering and enabling each resident to be a productive contributing member of their community.
Call or email us to schedule a tour (360) 984-3600
info@stephensplace.org 501 SE Ellsworth Road, Vancouver, WA 98664
Apartment rent is inclusive of all meals, supportive services, nursing & ADL assistance and programming including: Job Skills Training, Placement & Coaching Life Skills Training Ho Horticultural Therapy Group Fitness Classes & Yoga Arts & Crafts Movie Nights Sporting Events Group Outings to Local Attractions Transportation Services We also offer a Day Program to people who live outside of the Stephen’s Place community, but would like to build peer relationships
Learn more about us @ www.stephensplace.org
and participate in activities.