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SpectrumLife PORTLAND AND SW WASHINGTON’S ONLY MAGAZINE FOR THE AUTISM COMMUNITY TM
m a g a z i n e
MAKING SENSE OF SENSORY INFORMATION DIFFERENCES MY DAY IN OLYMPIA HONORING JOAN KUNI iEMBRACE - A JOURNEY OF POSSIBILITIES NEUROTHERAPEUTIC PEDIATRIC THERAPIES ASK SPECTRUM LIFE - EARLY SIGNS OF AUTISM PLACEMENT VS. LOCATION: WHAT DOES IT MEAN?
SPRING 2020
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SPRING 2020
contents
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Making Sense of Sensory Information Differences
FEATURED SECTIONS
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From the Publisher Welcome to Spectrum Life Magazine’s 2020 vision!
ADVOCACY
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Spectrum Life Resource Directory Spectrum Life Magazine online helps you find autism-friendly service providers.
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My Day in Olympia Lindy Treece visits the Washington State Capitol for Self-Advocates’ Day.
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Honoring Joan Kuni Celebrating the legacy of disability advocate and philanthropist, Joan Kuni.
LIFESPAN
13 16
AWEtism We Embrace 2020 Autistics and Allistics aligned together. Fluidity in Autistic Thinking How does movement play a part in the autistic mind?
Recreation
19 24
iEmbrace LLC A journey of possibilities, a lifetime of inclusion. Removing Barriers at the Oregon Zoo Community accessibility for all ages and abilities.
EDUCATION
28 30
Placement vs. Location How are Special Education placements and locations decided? Giving Children a Voice in Their Discipline A learning opportunity.
HEALTH + WELLNESS
34 37 38 40
Sensory Information Differences Making Sense of Too Big, Too Small and Distorted Input. Being Autistic by Matteo Musso Autistics forge new possibilities each day. Ask Spectrum Life Questions focus on signs of autism and the CDC Milestone Tracker app. Barriers to Fitness Overcoming common obstacles to prioritizing health.
therapy
43 46
Neurotherapeutic Pediatric Therapies OT, PT, Speech, Mental Health & Medical services through a nonprofit model. Upcoming Autism Empowerment Events Support Groups, Social Clubs and Special Events.
www.spectrumlife.org
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FROM THE PUBLISHER
SpectrumLife TM
m a g a z i n e
SPRING 2020 | VOLUME 9, ISSUE 1 SPECTRUM LIFE MAGAZINE TM A program of Autism Empowerment TM Karen Krejcha, Autism Empowerment, Publisher Dave Born, Graphic Designer
Welcome to the Spring 2020 edition of Spectrum Life Magazine! We have a beautiful vision. For those who are new, 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 in the autism community and our world at large. We work toward a vision of acceptance and inclusion where all people, including those on the autism spectrum, are supported and encouraged to lead fulfilling and awesome lives! As we reflect upon National Developmental Disabilities Awareness Month in March and Autism Acceptance Month in April, we encourage you to learn about local advocates from our present and past. Lindy Treece describes the experience of participating in Self-Advocates’ Day at the Capitol in My Day in Olympia (page 8). Matteo Musso shares in poetic form his experience of Being Autistic (page 37). Honoring Joan Kuni (page 10) celebrates the legacy of beloved disability advocate, pioneer, and philanthropist, Joan Kuni. There is a lot to embrace in this issue. You might even find a theme! AWEtism We Embrace (page 13) brings autistics and allistics together for support and connection. iEmbrace LLC (page 19) provides a journey of possibilities for adults and youth to develop skills and make friends while caregivers receive respite. Making Sense of Sensory Information Differences (page 34) shines a light on sensory challenges and Neurotherapeutic Pediatric Therapies (page 43) is a nonprofit providing OT, PT, mental health services and more! Whether you’re learning about the signs of autism in Ask Spectrum Life (page 38), Giving Children a Voice in their Discipline (page 30) or understanding the difference between Placement vs. Location in a school setting (page 28), our autism, education and legal experts are here to provide enrichment and empowerment. Speaking of which, we’re excited to share that our Autism Empowerment podcast is coming back as part of our 2020 vision and will be embedded on SpectrumLife.org and AutismEmpowerment.org starting in April. Watch our websites and social media for an announcement and please join us in our vision of an awesome, meaningful, healthy and joyful life for all people. Thank you for reading!
Karen Krejcha Executive Director & Co-Founder: Autism Empowerment™ Editor: Spectrum Life Magazine™
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www.spectrumlife.org www.spectrumsmagazine.org
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. © 2020 All rights reserved.
ON OUR COVER Enjoying fun with family becomes easier when we understand Sensory Information Differences. See our cover story on page 34.
Photo courtesy of Victoria Borodinova
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advocacy
IN THIS SECTION Spectrum Life Resource Directory................................................................7 My Day in Olympia..............................................................................................8 Honoring Joan Kuni.......................................................................................... 10
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www.spectrumsmagazine.org
Photo courtesy of Cacophony, CC BY-SA
EMPOWERING CHANGE WITHIN THE AUTISM COMMUNITY
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 directory listings, advertising and sponsorship opportunities. Please contact John Krejcha, Program Director at spectrumlife@autismempowerment.org or call (360) 852-8369. Spectrum Life Magazine and Autism Empowerment do not endorse, promote or guarantee the services or outcome of any one provider or type of therapy.
We currently list over 1,200 autism-friendly service providers from Oregon, Washington and throughout the United States. Some of the directory categories where you are able to search for providers in your region include: Adult Services Advocacy Assessment and Diagnosis Autism-Friendly Businesses Camps Caregiving Chiropractic Dentists Educational Support Employment Assistance Financial Planning Government Agencies Housing Legal Medical Professionals Psychiatrists/Psychologists Recreation Safety Schools Special Needs Trusts Sports and Fitness Support Groups Therapy and Interventions Transportation Travel The SpectrumLife.org website launched in March 2018 and is a continual work in progress. In order for our directory to become stronger and better known, we invite community members to share this valuable resource with their colleagues, friends and family members. Let’s work together to build our community stronger! Thank you for your support! To learn more about our Spectrum Life Resource Directory, please visit and bookmark www.SpectrumLife.org. If you have a resource you’d like to see added, please contact us at spectrumlife@autismempowerment.org or through our website. www.spectrumlife.org
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ADVOCACY
My Day in Olympia
Self-Advocacy at Washington’s State Capitol By Lindy Treece When I woke up, there was no question what I would wear: my trusty Autism Empowerment T-shirt and black leggings, with boots made for walking. I needed to be comfortable for a day of trekking around Washington State’s capital city of Olympia. I’d only known Olympia by the exit numbers on Interstate 5. Hearing anyone say “Olympia” had long filled my mind with the chaos and fake smiles that cause me to find politics disenchanting. And I’m sure I’m not the only one. Being an autistic activist, and furthermore a self-advocate, often feels like fighting an uphill battle. I am constantly trying to work my way into systems that have historically had a low representation of people with autism. As of this writing, we have no openly autistic legislators in Washington State or anywhere in the nation. So on this day, I thought I would give Olympia a try. The local nonprofit PEACE (Parents Empowered and Communities Enhanced) offers Advocacy Days in which transportation to the Capitol and meetings with local legislators are arranged by the organization (depending on availability). Each day has a different theme and the day I was attending was for self-advocates. In this role, I would attempt to convey the needs of the autistic community by sharing my knowledge and personal story with elected officials. We left at 8:00 am from the Innovative Services NW building in Vancouver, Washington. Our driver secured a vehicle for our trip, and I did the one thing my parents always warned me not to: get in a white van with strangers.
Our group was fairly diverse in terms of identities represented. We had four self-advocates (myself included) and two parents. After driving north through pockets of rain for a little under two hours, we arrived at our destination. We gathered at a nearby church to make name tags and go over details of the day. For the newcomers, the Arc of Washington provided a guide to House and Senate bills regarding disabilities. There were dozens of other disability activist groups meeting in the same building. Self-Advocates’ Day encompassed a wide range of abilities beyond just autistic abilities. Plenty of allies were present, too. Because it was Self-Advocates’ Day, I was hoping to network with other activists from around the state. Instead, it seemed like there was no system to allow self-advocates to find each other. Other than obvious indicators of disability, like wheelchairs, I didn’t know where “my people” were. There really are no visual indicators of autism, and the ones that exist are based on stereotypes. I get told too often that I don’t “look autistic”. I wanted a way for other people to know I was a self-advocate. In the large group, we heard from a few speakers on the subject of employment. Some of these speakers had disabilities and others held various roles in government. After an hour, we broke away from the large group and headed to a rally on the Capitol steps. I know people say that politics are an echo chamber, but the Capitol is literally an echo chamber. The building is made of a ridiculously large amount of marble that carries and amplifies sound. Our small group of six collectively decided to not stay long. After lunch and a much needed sensory break, we tried to visit some of our legislators. We spoke with Larry Hoff from the 18th Legislative District. He postponed his attendance at another meeting to meet with us, despite his aide’s insistence. I took that as a high compliment. He even said that our stories stole a piece of his heart. Later, we met with Annette Cleveland from the 49th Legislative District. She and two members of my group discussed the trouble they have been experiencing with Washington’s disability employment services. We were unable to meet with Brandon Vick from the 18th Legislative District, as he was in a meeting. We did not get discouraged. Instead, we conveyed our concerns to his legislative aide. While it is desirable to speak to elected officials face-to-face, it does not hurt to talk to legislative aides. Continued on next page
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www.spectrumlife.org www.spectrumsmagazine.org
My Day in Olympia, continued from page 8
Everyone deserves a full and meaningful life. PEACE can help you and your child have the life you both dream of. Multnomah County Intellectual and Developmental Disabilities Services Division (DDSD) is a part of a statewide services delivery system. We provide case management services to adults and children and help individuals and families choose and plan services and supports to live a healthy, safe and productive life. Services that may be available depending upon eligibility:
Case Management IEP Assistance Family Support Employment Transportation to work Supported Living Residential Career Discovery In-home Support for Children In-home Support for Adults
Want more information?
https://multco.us/dd 503-988-6258
Despite the increased sensory input, I was happy to see so many people at the Capitol. It felt amazing to see so much support for disability rights. My activist spirit honors the disability activists before me — the ones who fought for my access to education, healthcare, community living, and so much more. But there is still work to be done. Change is created by those who show up. We are stronger together and our voices matter.
Providing guidance, training & support around disabilities 9414 NE Fourth Plain Rd., Vancouver, WA 98662 360-823-2247, en Español x103 www.peacenw.org
• Finally, learn who your elected officials are at https://app.leg.wa.gov/districtfinder/ Lindy Treece is an autistic activist based in SW Washington. She is pursuing a Master’s degree in Social Work in hopes of becoming a resource for people on the spectrum. Her special interests include cats, geography, and writing for her website lindytreece.com.
Want to visit the Washington State Capitol? Know before you go: • Allow ample time for parking. It is very crowded and parking enforcement is hard at work! • Bring earplugs. The marble interior amplifies sounds. • Session lasts from January to early March. Dress for the weather. • Washington is an eco-friendly state, so many elected officials are declining paper materials. If you have information to present using paper, follow up with a digital version. www.spectrumlife.org
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ADVOCACY
Honoring Joan Kuni December 1930 – March 2019
By the Kuni Foundation
In honor of the recent one-year anniversary of the passing of Joan Kuni, this article was written so that the world would know of Joan’s legacy and heartfelt advocacy for the disability community. Joan Kuni, a Founder of the Wayne D. Kuni & Joan E. Kuni Foundation, left a profound legacy of service and philanthropy with her passing on March 6, 2019 at the age of 88. Throughout her life, Joan was a pioneer and advocate, blazing a trail for women in broadcasting and shifting the tide of inclusion for individuals with intellectual disabilities. Born Joan Estelle Dotsch on December 3, 1930 in White Plains, New York to Fred and Estelle (Nevins), Joan’s parents divorced shortly after her birth and she lived briefly with her grandparents in Michigan. Even as a child, Joan had a knack for doing things her own way. In grade school, she didn’t want to ride the bus, so she rode her horse to school each day. Her creativity also applied to music; when playing the piano, she changed the words to the songs and made up new stories, putting her distinct mark on the tunes she sang. While in Michigan, Joan’s mother Estelle found work with General Motors, where she met her second husband, Lewis Van Arman. Lewis adopted Joan in December 1944, and she never considered him anything less than her true father. In fact, when Joan received a letter from her birth father during her teen years, she never opened it out of respect for Lewis. Joan’s family grew to include two half-brothers, Joel and Gary, and a stepsister and stepbrother, Marilyn and Bob. Joan and her future husband, Wayne Kuni, attended the same grade school and high school, and seemed destined to marry. When Wayne was 10, his mother passed away. While his Aunt Margarite and Uncle Jack became consistent figures in his life, they were not traditional parental figures, and Wayne yearned for the camaraderie of a more traditional family. He was drawn to the close-knit Van Arman family and found comfort and support in the relationships that evolved with Joan, her parents and siblings.
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Joan graduated in 1950 from Stephen’s College in Columbia, Missouri, with an Associate Arts Degree. Remaining true to the girl who rode her horse to school, Joan did not follow the path that most young women took in the ‘50s. Rather than become a bride, teacher or secretary, Joan focused on a broadcasting career, and she excelled. Her experience as a disc jockey and news reporter at college radio station KWWC helped pave the way for a job at WJR-AM Radio in Detroit, Michigan. As a program director, Joan worked on a range of elements, from news to sports to commercials. She even helped with sound effects, and at one point lost her watch to her creative pursuits when it dropped in a container of water while she recorded a commercial. Joan later transitioned from radio to television, working for ABC affiliate WXYZ In Detroit. It was here that Joan made her mark on the television landscape by launching the career of renowned TV personality, comic and gameshow host Soupy Sales. Joan interviewed Milton “Soupy” Supman, hired him and he had a long, diverse career punctuated by comedic sketches that typically ended with him getting a pie in the face. Soupy and the actors who played the Lone Ranger and Tonto all attended Joan’s wedding. After Joan married Wayne Kuni and had her first two sons – Stephen and Michael – her tenacity, creativity and huge heart shifted to their care and growth. Both boys were born with intellectual and developmental disabilities, and Joan was strongly advised by doctors to institutionalize her sons. In fact, the pressure was so intense during that era that most families simply gave up their children. Joan was repeatedly told that Stephen and Michael would never have any kind of meaningful life and would probably never talk or have the capacity to learn. True to her nature, she forged a different path for Stephen and Michael. Joan embarked on a lifelong journey of advocacy to ensure that her children – and later other individuals with intellectual and developmental challenges – had a wide range of opportunities and the very best quality of life. She proclaimed that Stephen and Michael would be raised like any other children. She took them everywhere, and the boys were never hidden or left out of any Continued on next page
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Honoring Joan Kuni, continued from page 10 activity. Joan’s decision and her approach would end up having a profound, lasting impact on the intellectually disabled community, inspiring continuous positive change. When Wayne’s career prompted a move to Oregon in the late 1960s, Joan researched the school districts and determined that the city of Beaverton had the best opportunities for intellectually disabled children. Joan became involved with local families who had similar situations, creating community and working together to ensure that their children had every opportunity. In 1972 the tide was changing for disabled individuals, and Joan was helping to shift perceptions of what was possible. After Stephen and Michael, Joan had several more children: Deborah, who passed away as an infant; Sean; and Kimberly, who was adopted. Sean recalls a life of inclusion with his brothers and remains dedicated to expanding opportunities for individuals with intellectual disabilities. As her children grew older, Joan worried about next steps for Stephen and Michael once they aged out of school-based programs. The supports that parents had fought for and that children received through public schools and other state and community-based programs ended once children reached adulthood. At the same time, Kuni Automobile continued to expand, providing Wayne and Joan with the resources to explore and develop housing solutions for Stephen, Michael and other individuals. Eventually, this path would lead to the creation of the Wayne D. Kuni & Joan E. Kuni Foundation, a Washington-based charitable foundation that funds housing and enrichment opportunities for individuals with intellectual disabilities, in addition to cancer research. Of particular concern to Joan was how to ensure that individuals with an intellectual disability could age in place within a vibrant, supportive and stable community of their peers. As part of this transition to greater independence, Joan focused on curating a small apartment complex, where Michael ended up living with his wife, Sue, who also had an intellectual disability. The boy who doctors said would never live anything close to a normal life became an adult with a job, a spouse, and lived independently in an apartment. Such was the power of Joan’s love and conviction. Sadly, the Kuni family lost Stephen after he came down with a bad case of pneumonia. Stephen was born with weak lung capacity, and he was not able to fight off the infection. Ever the advocate, Joan doubled down on her quest to find the best possible living arrangements for Michael, who lost Sue to cancer. Joan knew that as Michael grew older, he would need more support, and she worried about what might happen with his care once she and Wayne passed away. After scouring the country for best practices, in 2013 Joan helped lead the development of Stephen’s Place, a 41-apartment assisted living complex for individuals and couples with intellectual disabilities. Named in honor of her son Stephen, the Kuni Foundation funded the majority of the $10 million project. The Foundation continues to provide general operating support to the Vancouver-based nonprofit, which attracts clients from throughout the
United States. Today, Sean Kuni continues on the path of advocacy his mother forged, sitting on the board of directors for both Stephen’s Place and the Kuni Foundation. After a life lived in quiet – yet fierce – service to others, Joan was at peace knowing that Michael resided in a caring, supportive and joyful community that enabled him to experience a vibrant range of opportunities, including as a superfan of the Portland Trailblazers. Joan proved the doctors wrong all those years ago. Her determination and advocacy on behalf of her sons continues to have a profound, positive ripple effect throughout a community that is all too often marginalized. Joan’s legacy of compassion, inclusion and advocacy will live on through her family and the mission of the Kuni Foundation. For more information about the Kuni Foundation, please visit www.kunifoundation.org. For more information about Stephen’s Place, please visit www.stephensplace.org
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lifespan ALL AGES AND ABILITIES
IN THIS SECTION AWEtism We Embrace 2020......................................................................... 13 Fluidity in Autistic Thinking....................................................................... 16
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LIFESPAN
AWEtism We Embrace 2020 Autistics and Allistics Aligned Together By Karen Krejcha Shasti McLaughlin first wrote for Spectrum Life Magazine (formerly Spectrums Magazine) in Fall 2016. At that time, she had recently collaborated with Autism Empowerment to help relaunch her vision for a new kind of autism support group in the Portland area called AWEtism We Embrace.
I realized pretty quickly that the conversations we had were based on issues we didn’t understand and much of the conclusions we came to about those issues were solely conjecture. We didn’t know what we didn’t know about the autistic experience.
The group has evolved along the way, bringing autistic and allistic (aka “not autistic”) people together in an AWEsome way. Now that AWEtism We Embrace is over five years old, we checked in with Shasti to learn how the group has transformed.
I had recently met a prominent autistic adult within my local community. I believed he would be able to give me more clarity. When I asked him honestly and openly about what I didn’t understand, he was positively open to sharing.
For readers who may not have read the original story or who welcome a refresher, we asked Shasti to go back in time and share where the group’s journey began. What is AWEtism We Embrace? AWEtism We Embrace, or “AWE,” is a group I created to connect people with one thing in common: autism. I originally created AWE for allistic parents of autistic children.
It dawned on me in no time that allistic people need autistic adults in order to diminish fear and develop understanding about how individuals experience autism. They are the experts and they have the information. I opened up the support group invitation to AWE to autistic adults. To my surprise, they wanted to attend! For some reason I had thought they wouldn’t want to. I had thought that the neurotypical and neurodivergent communities were supposed to be separate.
Continued on next page www.spectrumlife.org
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AWEtism We Embrace, continued from page 13 How did that invitation transform your group dynamics? Autistic adults started to make up the bulk of the attendance. It was made abundantly clear through AWE that autistic adults wanted to be heard. They had questions for the allistic members too. They had so much to say! Unsurprisingly, they were able to provide more information about every aspect of autism than any other source I could imagine. And I, as an allistic parent of a neurodivergent child, needed to hear what they had to say so that my daughter could ultimately navigate the world. The most valuable information I have acquired to date about how to better parent my now verbal teenage child has come from autistic members of AWE. Before founding AWE, you and your husband were doing your best to parent your daughter without group support. What was that like? My husband and I, like so many parents, were given apologies and mournful looks by the professionals who diagnosed our non-verbal child at the age of 5. We, like so many families, were given “hope” by being offered therapies and names of professionals who could help our daughter and support us in our journey to essentially “fix” her. There are so many problems with that approach. The words “deficit,” “wrong,” “struggle,” and “disorder” create a feeling of despair and isolation. They do not prepare parents to be present for their children. This is not done intentionally. Truthfully though, when parents are approached by “experts in the field” who are not autistic who inform us that our children can “change”, it does not feel supportive. It feels like we have to alter our children into something they are not in order to be complete. It unintentionally creates a choking despair in parents who just want to have a relationship with their child.
don’t conform to any neurotypical expectation that we can embrace? What can we celebrate? Why don’t we congratulate one another on being connected to autism? How did the group evolve over time? I created the group somewhere around 2014 or 2015 but we didn’t have a consistent meeting place and so in 2016, Autism Empowerment helped support us with our relaunch. For awhile we met at Concordia University but for over a year now, we’ve been meeting in a conference room at the Providence Medical Center in Portland. Over a period of about two years, the group became a place where members of both neurotypical and autistic cultures could admit to what we don’t know about each other. AWE is now a group for letting down our guard and asking questions so that clarity comes to the forefront. With clarity we become better people and treat one another with more respect. We recognize that difference isn’t frightening. It’s just difference.
We loved our daughter’s ability to be herself in a world so willing to require and accept conformity. We watched her differently than we would an allistic child who spoke, and as a result, we learned ample amounts about the human condition in a relatively short time.
When I say “clarity” I do not mean understanding. We can gain clarity and still do not (necessarily) understand. I will never understand what it is like being on the spectrum, but I can gain clarity on how my daughter can feel and help her navigate her world as an autistic person.
Children learn and they learn in unique ways. Even though allistic children appear more willing than autistic children to attempt learning in more standardized ways doesn’t always mean they are learning. It means they are willing to conform.
And that makes me a better parent, and a better person. I cannot gain that kind of clarity by hanging out with only allistic adults. I need the autistic community and more importantly, my daughter needs it. She lives in both worlds as I do.
Our daughter wasn’t willing to do that and my husband and I thought that was pretty darn AWEsome. We didn’t see how that was a deficit. So we walked a different path with her. We used one question to guide us as parents: “Is she happy?” If not, what would create ease for her? And we did that. We still attempt that as often as we can.
Who is encouraged to attend your gatherings?
So it was your daughter’s AWEsomeness which helped lead to your group name? Yes. This is why I named the group AWEtism We Embrace. Forget the “disorder” part of “Autism Spectrum Disorder.” What are aspects of autism that look like autism and
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AWE is for any adult with a connection to autism. This means parents with children on or suspected of being on the spectrum. It includes siblings, partners, friends and any ally who identifies as allistic. It includes adults on the spectrum with or without a diagnosis. How would you describe the group dynamics and balance in terms of attendance? Today, AWE has a pretty balanced allistic to autistic attendance ratio. I want AWE to bring the two cultures together: that of the autistic community and the allistic community. Continued on next page
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AWEtism We Embrace, continued from page 14 I did not create AWE to provide neurotypical parents a panel of autistic people to interview. It was and is not my intention. I saw how quickly my parenting was improving by talking to autistic adults and I saw how the adults on the spectrum were able to ask why I did or did not behave in ways that made sense to them. I couldn’t find another group that brought us together and I wanted my daughter to befriend and to know that I have befriended people on the spectrum. I wanted other parents with autistic children to not be afraid of their child’s autism. How do you handle any misunderstandings or challenges that may arise due to differences in thinking styles and personalities? Because the group involves neurotypical and neurodivergent members, there have been a few times people have felt insulted or hurt, misunderstood or not heard. As the leader, I work diligently to be aware of comments and feelings being expressed that may create discomfort. Each member is required to sign their name upon entering the room stating that they recognize the space as confidential and safe. I do my best to remind members to honor one another’s experiences without judgement. No one person’s experience is better or worse than another’s. It is unrealistic for me to expect no misunderstandings to occur. We do not know what we don’t know. We will inevitably insult or hurt another in our efforts to gain clarity in subjects we don’t understand. We are ALLOWED to make blunders in this group. How does one ask a question about a topic they don’t understand and do that in a “politically correct” way? The possibility of making mistakes in this group is high. Whether the recipient of the question or comment is allistic or autistic, we misstep. We are open to discussion as to how we can remedy those errors. This is the biggest challenge for me as a leader in a group like AWE. As far as I know, this is the only group of its kind out there in this region that is not online. Do you have an online place for members to continue conversation or for people who can’t make the meetings in person? We do have an AWEtism We Embrace Family and Friends group online through Facebook that is private. It includes many people who are not able to attend gatherings in-person due to scheduling or other reasons. The online group dynamics are much different than the in-person group because when we see one another and see faces, hear voices, and connect in a private physical environment, we are more likely to share more personal information. We are willing to share information that makes us vulnerable. And from my perspective, that moves us closer to understanding how our own actions affect one another intentionally or not. The online private Facebook group at this time is utilized more for informative articles and events. Adults can request to join at: www.facebook.com/groups/awetismweembrace.
Where and when do you meet? AWE meets on the third Thursday of most months (except June) at Providence Medical Center, 4805 NE Glisan Street Portland, Oregon in Room HCC6 from 6:30 - 8:30 pm. It is always free to attend and there is free parking in the adjacent parking garage. Our April gathering is different. On Wednesday, April 8th, 2020, we invite adults and kids to a casual meet and greet from 6:30 - 8:30 pm at Dick’s Kitchen and Primal Burger, 3312 SE Belmont St., Portland, OR. Food purchase optional. Gluten-free and vegan options available. Everyone is encouraged to show late if they need to, and leave early if that is more comfortable. No one is required to introduce themselves, divulge diagnoses, or speak if they don’t want to. What kind of feedback have you received from group members? As far as feedback from members, the most heartwarming piece I have heard is from a member on the spectrum. If I could quote this person directly I would. I cannot quote the person verbatim, but hopefully I can portray the meaning. The person was expressing that in the in-person group, AWE is helping to move the idea of autism into being a “new” experience as opposed to a “broken” experience. My understanding of that comment is that autism is often presented as something to be remedied. Through attending AWE, this person sees autism as an experience to explore and to be seen as being human from a new perspective rather than a broken perspective. THIS IS MY ULTIMATE GOAL!! Another person said that as a person on the spectrum and being a parent of a child on the spectrum, AWE is one of the few places they have found to be accepted as both, not one or the other. An allistic member told me that AWE has helped them ease fear around what the future of their child may hold. Another person, also neurotypical, said that they did not realize how much of the world around us is based on unwritten rules that lean toward conformity for conformity’s sake. They realized how much of what allistics have designated as “normal” is not all that useful. Another comment about how AWE has been helpful was made by a young adult on the spectrum. This person enjoyed the different generational views. Our group is diverse not only in that we include neurotypical and neurodivergent, but we have a large range of ages that attend. And parents (allistic or not) with adult children on the spectrum can attend together and they both get support. What is your vision for the future for AWE? It feels good to be a part of this. It feels like a movement. A mini revolution. AWE and its members are motivated to move the experience of autism from dark and burdensome into something bright and beautiful. I can see AWE as a podcast, a video series...who knows? It feels good making changes in small ways. To be able to reach further than our little corner of the Pacific Northwest would be delightful. I can see it happening. Who’s with me?
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LIFESPAN
Fluidity in Autistic Thinking When movement is
, what can you do?
By Judy Endow One of the hardest things about my autism is the unreliable fluidity of my own thinking. Sometimes my thoughts are fluid and sometimes they are not. When my thoughts are fluid, I can easily think through task-oriented things such as making a meal, writing an article, or cleaning the house. I can make a mental (or written) list and follow it. I can think of a main idea and subtopics. I can gather supplies and start.
Sometimes I continue on in writing and other times the thought fluidity is sparked enough that I can continue on with my thinking without the need for written support to aid the thinking fluidity.
When my thoughts are not fluid, life is a bit different. When it comes to meals, rather than eating dinner, I will eat one thing at a time. I might eat a banana. Then an hour later, I might put a frozen turkey burger in the microwave and eat that. Later still, I might put a bag of frozen vegetables in the microwave and eat just those vegetables. It works for me. When it comes to writing or cleaning the house, I am not able to engage when my thoughts are not fluid. Well, technically, I could engage, but have learned that it is a huge waste of time. My best strategy is to put it off until my thoughts are more fluid. Because it does not work in life to simply put off doing many things because my thoughts are not fluid, I have figured out strategies to keep my thinking as fluid as possible. Many of these strategies are sensory-related. The more dysregulated my body becomes, the less fluid my thoughts, is the general rule. Even so, it is not consistent across the board. There have been occasions where I was quite dysregulated and had fluid thoughts. There have also been occasions when I have been well regulated and my thinking fluidity was anything but fluid! Helpful Activities Toward Impacting Movement Fluidity in My Thinking • Maintaining General Overall Sensory Regulation: I spend several hours each day to maintain regulation as best I can. Typically, I have a current routine that works well for a couple of years and then what works to bring daily sensory regulation to my system changes. • Walking: Many times, walking seems to serve as an oil of sorts for my thoughts. Walking helps my thoughts to move along as my feet take steps. • Writing: Sometimes I can kick my thinking into movement if I begin to write words. This strategy is especially helpful when my brain is stuck on a phrase that keeps repeating in my thoughts. I find that if I write down a repeating phrase each time it comes up, that after a few times I can continue on with the written phrase.
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• Art Endeavors: Creating anything artful that shows movement such as painting, quilling, quilting, knitting, crocheting, photography, etc. is quite helpful to get sluggish, non-fluid thoughts moving better. The practical problem with this strategy is that even though I have many sorts of art endeavors I enjoy, they are packed away on shelves inside a large walk-in closet. When my thoughts are not fluid I do not have the capability to get out the supplies I need for any given project. I have tried over the years to outsmart this by having a great organization system with totes and boxes clearly labeled. While this has made for a neat storage closet, it hasn’t been helpful in terms of being able to get out needed supplies to engage in an art project when my thoughts are not fluid. When I need it most is when I can’t do it. Continued on next page
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Fluidity in Autistic Thinking, continued from page 16 • Reading: This strategy doesn’t consistently work, but it is so easy to pick up a book to see if reading will work. I can know after reading a few pages whether or not it will work. I always have several books I am in the process of reading so I have lots to choose from at my fingertips when I am home! I have also found that if I read every day it seems to be helpful in terms of keeping my thoughts more fluid.
discussed. This burnout has to do with becoming physically unable to keep up the pace of acting as if we are not autistic so as to fit into the world around us. After decades of making ourselves appear to be of typical neurology so that we can work to pay the bills and interact in community settings to raise our kids, many of us slowly come to experience burnout. Some of us have come to a grinding halt and others of us experience this burnout more slowly over time, but all of us have found it necessary to pull back, retreating from the demands of our world. I wonder if there is an intersection or overlap of autistic burnout and difficulty maintaining thinking fluidity or perhaps if uneven movement fluidity in thinking is part of autistic burnout. Looking to the Future I would love to hear from others as to the presence/ absence of increasing difficulty with thinking fluidity as aging occurs along with any helpful ideas you are willing to share from your own experience. In addition, if anyone knows of anything written about this topic of movement fluidity in thinking being impacted as autistics age, please share.
A Movement-Related Issue The problems I experience with fluidity in thinking seem to be a movement-related issue. It has so many parallels to physical movement, only instead of my body moving, the movement has to do with the physical movement in my brain that happens when thinking. The impact of movement fluidity in thinking used to be a small factor in my life. It seemed that as long as my body was in a good place with sensory regulation, my thinking fluidity was pretty good. This has changed with age, especially over the past few years.
We are looking forward to hearing from Spectrum Life Magazine readers, particularly those feeling the need to age gracefully together, learning from one another and forging new territory for those coming up behind us. This article also appears on Aspects of Autism Translated at www.judyendow.com.
Additionally, the problems I experience with fluidity in thinking are not the same as experienced by older adults in general. When movement fluidity in thinking becomes glitchy – jumping, stopping, slowing with irregularity in pace and intensity – I can impact it towards good by employing the previously stated measures. If I do not actively use these strategies, my thoughts become fewer and fewer along with body movement becoming less and less. This gets scary, so now that I have figured out what to do, I do so. Scarcity of Information about Autistics Aging During the past few years (I was 61 when I first wrote about this topic) my thinking fluidity has become more front and center in needing to be managed. The ideas stated here have been the ones that have worked the best for me. There is so little written about autism and aging. There are so many autistics aging. It seems I am foraging into new territory to write about this topic.
Judy Endow, MSW, LCSW maintains a private practice in Madison, Wisconsin, providing consultation for families, school districts, and other agencies. Besides having autism herself, she is the parent of three grown sons, one of whom is on the autism spectrum. Her newest book, Autistically Thriving (2019) can be purchased through her website at www.judyendow.com.
I also wonder about the impact of autistic burnout factor that many of my aging autistic cohorts have written and www.spectrumlife.org
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recreation
IN THIS SECTION iEmbrace LLC.............................................................................................19 Removing Barriers at the Oregon Zoo.......................................... 24
Photo courtesy of iEmbrace LLC
INCLUSIVE WAYS TO HAVE FUN
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RECREATION
iEmbrace
A Journey of Possibilities
By John Krejcha iEmbrace LLC is a passionate community organization in Southwest Washington working to empower youth and adults with developmental disabilities to live a meaningful life. While iEmbrace clients work to develop skills, build relationships and have fun doing it, parents and caregivers have the opportunity for respite and resources which keep them connected to their community. Spectrum Life Magazine recently connected with Kristine Woods and Lonni Powers, founders and co-owners of iEmbrace to learn more about the fun things they do to promote inclusion and social opportunities. Hello! Please tell us a little about yourselves and iEmbrace. Both of us (Kristine and Lonni) have huge hearts. Together, we had a passion to create an organization that would increase the quality of life in others within the Developmental Disabilities (DD) community. We surround ourselves with a team who can see our vision and help bring it to fruition. Shari, Jessica and Michelle all started this journey with us, and they continue to represent iEmbrace’s core values. Speaking of your core values, what are they? It was important to both of us to have a strong name that not only represented our organization’s mission and vision, but also our agency’s core values. It starts with ‘iEmbrace’ and we add in our core values: • Honesty • Integrity • Family Values • Dignity & Respect • Culture & Diversity • Open Communication • Friends & Community • Adventure, Fun & Laughter What inspired you to create a business that serves families in the DD community? Glad you asked this! We were both working in Supported Living, assisting adults with Developmental Disabilities to live independently in a home of their own. While working in this field and talking with others in the community, we found there was an overwhelming need to support individuals that still lived at home with their parent(s) and/or guardian(s). Our initial idea was to create a program that would teach and train family members and other support individuals about techniques for behavioral support, activities of daily living (ADLs), the Picture Exchange Communication System (PECS), resource education, and much more. As we began working and structuring our plan, we really felt this was just a starting point.
Where we saw a real disconnect was after a young adult graduated from school or a transition program. This is a big life change and many need guidance on ‘what do I do now or next?’ This is where our Community Guide and Engagement services were born. Do you or your staff have a personal connection to someone on the autism spectrum or with developmental disabilities? Each one of us has been touched and blessed with knowing someone with varying special health needs. We all have a story that can include our kids, grandkids, family members, and/or friends. It’s these connections, and stories, that have led us to iEmbrace. Every day we have a special connection with our friends at iEmbrace. You can’t help but feel a connection with someone while helping them gain their independence creating a meaningful life. What are the services that iEmbrace offers? Community Guide and Engagement – This is more of a one-on-one service that assists individuals with achieving goals and making connections. We assist people with many different goals, whatever is important and meaningful to them. It can be very specific, like finding and connecting with guitar lessons, or it can be a more broadened goal like finding social connections, making friends, or budgeting. We work with individuals on skills that will increase their independence while out in their community. We have created a curriculum called RISE (Reaching Independence & Self-Empowerment) that teaches individuals several life skills (safety awareness, money management, coping skills, self-awareness, voting rights, human rights, self-advocacy, social and communication skills, personal boundaries, healthy living, nutrition etc.). At the end of our five-month RISE curriculum, each participant creates a vision board of their achievements, aspirations and goals to present to their family/guardians at a graduation ceremony. It is an amazing celebration of everyone’s growth and accomplishments! Community Respite (Groups) – We create specialty interest groups and recreational events that not only spark interest but will have opportunities to create lifelong memories. We tie into personal interests too. For example, once we had an individual ask me, ‘Lonni, I’d like to go to the fair with a couple of my friends from iEmbrace, can we plan that?’ “Why, yes we can, let’s plan that together!” I get so excited to plan that next adventure. Especially, when I know I’m planning that train trip for someone who loves trains. Or… the great scavenger hunt for Santa for someone who loves Santa. Or…the trip to Monster Trucks…oh I can keep going but they all know who they are and how much they mean to us. Continued on next page www.spectrumlife.org
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iEmbrace, continued from page 19 What kinds of recreational outings and special events do you offer? This is such a big question as we are always trying to think of what we can do next. We have weekly programs like Pokemon club, bowling, movie club, Friday fun days and much more. We do not have an average outing size because each activity is so different. It can be just two individuals, or as many as 25. Although many of the people who attend are adults, we serve youth also, including as young as age 5 all the way to 60+. We have a team of 15 Community Guides (employees) that have excitement for what we do, and are incredibly creative and resourceful in making any type or size of outing happen.
and also at our physical locations in Vancouver and Longview. Our services are open to individuals that have Washington Developmental Disabilities Administration (DDA) services, although we’re also open to anyone through private pay and who is willing to travel. Please share a story or two about clients you have helped. Story #1: Oh, there are so many! But one special guy who has been with us from the beginning comes to mind. His name is Andrew. I (Lonni) was his Community Guide and I was assisting Andrew with finding activities of interest in the community. Initially, he was going bowling with a small group. His mother would call or text asking what happened because he was saying he didn’t want to go out with us anymore. I was feeling pretty defeated.
Photos courtesy of iEmbrace LLC Then we have summer camps or monthly specialty events that are based on holidays, special interests, or just what sounds like fun! You can check out our monthly activities flier on our Facebook page at www.facebook.com/iembracellc. Where are you located and what region do you serve? We serve individuals from Clark County, Cowlitz County and Lewis County. We have activities out in the community
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His mom and I made a plan for him to come out with me again because she thought this was important for him. His mom was ready to come and pick him up if he was not wanting to stay the entire visit. I knew he wouldn’t stay. He was reserved and quiet. Maybe I was talking too much? So, I talked less and observed more. He was on his phone a lot and didn’t seem interested in bowling. Hmmm. Then I caught a glimpse…. He was playing Pokemon! I had just started playing that game with my grandson. Yes, this old lady knows a thing or two about Pokemon. His eyes lit up Continued on next page
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iEmbrace, continued from page 20 when I asked him about it. We finished bowling and went to lunch, just where I knew there were some Pokestops. He didn’t want to go home and he was talking and joking with me…and seemed to like it! Score! Well, Andrew did not call his mom as I anticipated him to. In fact, we stayed out for six hours that day because I was determined to keep this connection going. We were both sad to end the visit. That day I went home beaming from ear to ear. I called Kristine and told her about my day. I think I even shed a tear or two. It was that day I knew we made the right choice by starting this journey with iEmbrace. And Andrew… well he is still with us, leading our Pokemon group and continuing to make connections. These social connections opened his world up to establishing natural and meaningful relationships. Andrew now technically assists and mentors others. I am no longer his Community Guide, Michelle is. That was a huge victory that he transitioned so well to another Community Guide. Yes, she is also another fellow Pokemon player. His mom also reports that his iEmbrace day is the one day she can guarantee is a good day for him. Andrew is not just an iEmbrace client, he is truly my friend. Story #2: We were invited to visit a middle-aged lady in her home to discuss our services with her. This lady had extreme anxiety and did not want to talk with us. She was extremely negative about anything discussed and strongly voiced that she did not want to leave her home to go do anything or interact with anyone. We were determined to build a trusting relationship with her, so we visited a few more times and negotiated and encouraged her to try doing things in small steps. We first did activities in and around her immediate neighborhood. We then started taking her for car rides, later advancing to getting out of the car in a small setting until we worked up to her riding the bus independently to and from activities. She participated in our RISE program and just blossomed. This lady, who would never smile, never have anything positive to say, and did not want to socialize or leave her home, was now taking the bus into her community 2-3 times per week, fully participating in activities, socializing and making friends, is always asking to go more places, and best of all…has a smile on her face! This was an amazing accomplishment for our team to be a part of changing this lady’s life, and it is why we are so dedicated to what we do!
What are the fees associated with your programs and what kind of payment methods do you accept? We are contracted through DDA and provide Community Guide and Engagement and Community Respite services. Community Guide and Engagement is a one-on-one service and is $26.72 an hour. Community Respite covers our group activities and is $18.16 an hour. Although, anyone is welcome and we do accept private pay for people who want to join in and do not have DDA services. What are the future goals and vision for iEmbrace? Our future goals and vision are to just keep doing what we are doing. To continue to be creative, out of the box thinkers and find out what motivates others, but most importantly, what makes them smile. Our goal we set every day is to greet our iEmbrace friends with a smile and make sure they leave with a bigger one. As much as I want to see them again, I want them to leave with anticipation of their next activity with us. It’s important to us to offer a quality service. Our friends deserve that. What else is important for Spectrum Life Magazine readers to know? To determine whether this is right for you or your family, you can connect with iEmbrace through our Facebook page, via direct email or through your Washington State DDA case manager (if applicable). • Facebook: www.facebook.com/iembracellc • Email: Kristine at kristine@iembracellc.com or Lonni at lonni@iembracellc.com. iEmbrace is just one of our journeys. We have a vision to do much more. Currently, we just opened an agency in Longview called Adam’s Place where we offer Supported Living services. Yes, we returned to our roots. And yes, if we have anything to say about it, there’s much more that we can do! We have big ideas and big plans.
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 a cat named Zula. While John is the only one in the family who is not on the autism spectrum, he is a neurodiverse and loving ally. www.spectrumlife.org
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Tax-deductible donation for your car, truck, RV or boat (Running or not) • Picked up free of charge by Donate For Charity • Proceeds go to Autism Empowerment and Spectrum Life Magazine
18th Annual Autism Walk Sunday, April 26, 2020 at Oaks Park Fun Starts at 9am Walk Starts 10:45am • Rides Open 11:30am A day of family, fun and community! Face Painters • Photo Booth • Crafts/Sensory Table Quiet Area • Obstacle Course • Cosplay Characters Community Resource Exhibitors • and more!
Sign up for the Community Rewards program by linking your Fred Meyer Rewards Card to Autism Empowerment at www.fredmeyer.com/communityrewards. You can search by our name or by our non-profit number WA330. There is no cost to you! Thank You!
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RECREATION LIFESPAN
Removing Barriers at the Community Accessibility for All When it comes to offering accessibility at recreational facilities, including parks, zoos and other entertainment venues, it’s essential to consider the challenges and lived experiences of the wide range of people who attend. The Americans with Disabilities Act (ADA) prohibits discrimination against people with disabilities in several areas, including employment, transportation, public accommodations, communications and access to state and local government programs and services. Accessibility challenges for autistic youth and adults often look different than for those with other kinds of disabilities. Sudden or loud noises, strange smells, long lines and the unpredictability of large crowds are common areas of concern. Fortunately, the leadership at the Oregon Zoo is committed to partnering with the autism community, the disability community and our allies. For example, in April 2019 the Oregon Zoo became certified by KultureCity as a Sensory Inclusive™ location. (See KultureCity - Rethinking Accessibility in the Fall 2019 issue of Spectrum Life Magazine) Also, Oregon Zoo staff regularly meet with regional disability consultants, advocates and self-advocates both in small monthly groups and in larger group gatherings. Here are details from a recent meeting of advocates and allies, which also included staff and volunteers from Autism Empowerment, FACT Oregon, Oregon Office on Disability and Health, and Portland Community College Disability Services.
By Claire Rischiotto originally published in an internal newsletter for Metro on December 16th, 2019 Oregon Zoo staff held a meeting with disabled members of the Portland region’s community about how to make the zoo more accessible for everyone. 60 million adults in the United States have a disability of some kind, but many businesses and facilities are not designed to accommodate or be accessible for children, adults, and seniors who have disabilities. Over the years, the Oregon Zoo has been making a concerted effort to make its educational and engaging animal conservation opportunities accessible for everyone. Starting in February 2019, staff convened a Community Accessibility Work Group (CAWG) to provide advice on all aspects of the zoo’s accessibility planning as well as serve as connectors to the disabilities communities, including people
who are blind, physically disabled, deaf, have mental or behavioral challenges, or those who process sensory input differently. On a Saturday afternoon, almost 40 people gathered to provide feedback and ideas based on their experiences attending the zoo and how to make the site more accessible. As community members and Oregon Zoo staff, Patty Unfred and Will Cortez noted throughout the three-hour forum, this process of discussion and feedback was not about checking a box on ADA requirements. Instead, this meeting was about literally giving disabled members of the community a seat at the table with the opportunity to directly provide feedback to Oregon Zoo staff. This was evident in the preparation for this meeting. Unlike most meetings that people will attend in their lifetime, be it work or city government meetings, the meeting agenda and supplementary material were provided in Braille and large print formats, and the zoo map was recreated as a tactile graphic. American Sign Language interpreters signed the entire discussion. For Cortez, he said this initiative is about removing barriers for members of the community and providing an experience that is enjoyable and memorable for all guests at the Oregon Zoo. “I’ve got actual barriers for (people with disabilities) at the zoo for them to experience our conservation message — that’s the part that really hits me the most,” Cortez said. “I really need that to be an accessible space. But more than that, I need it to be a safe space. And I need it to be a safe place for people who are independent as well as those who are seeking services.” In small group discussions led by the seven members of the zoo’s CAWG, members of the community shared their personal feedback on ways in which the zoo currently is inaccessible for them as well as ideas for improvement. Participants commented that it was challenging and in some cases impossible to maneuver a wheelchair over rock roads and would instead prefer paved roadways. Members of the deaf community shared that they want American Sign Language interpreters to aid with learning about animals and also basic needs such as navigating. And one small group participant and parent of two said Continued on next page
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Removing Barriers at the Oregon Zoo, continued from page 24 that it would be helpful for both him and his wife, who are blind, if the zoo had an app that included a map and audio features to narrate different animal exhibits. CAWG member Patricia Kepler, who is helping advise the zoo on their accessibility planning, shared that as a person who is blind, this meeting and those in the past “really affirmed what we’ve been saying” and that “it was affirming to hear so many different members of the community come and share their ideas, see that we’re on the right track, and get their input to give us even more direction.” “One of the most rewarding things that this meeting allowed for is gathering people with different disabilities, including parents, individuals, and children, to come together and share fresh ideas on how to make the zoo more accessible for people of all abilities.” Kepler said. Kepler also shared a personal story that made it clear that any negative experience that is the result of a business not being fully accessible can have long-lasting painful consequences. “As a person who has a disability myself with children, I’ve had those encounters where I’ve planned this great family outing only to have it ruined because there was some accessibility barrier. This left my day feeling like I wrecked my kids’ special day because of my disability, which should never happen.”
“As a deaf resident of Portland, this is the worst place to live for a person who’s deaf, sadly. Though billed as a progressive city, it is not. I’ve noticed for many public events, they’re not accessible. And for me as a deaf person, I have to fight to get what I need. Meaning, while I’m fighting to get accessibility, the pleasure value of the event really puts it second at best,” Wolfe said. After a long session of community engagement and feedback there was a warm sense of optimism and strength among community members. Many noted that this was a successful first step toward making the Oregon Zoo more accessible. And also a rare opportunity to feel heard and take part directly in creating a more inclusive space. “I really think Patty (Unfred) and Will (Cortez) have done such a great job and they’re excited about this and we feel their energy and their sincere efforts to make this a success. I think the community in this room felt that too and I think that’s going to go far because people feel heard and like they’re going to get their feedback (used),” Kepler said. Read more Metro News at oregonmetro.gov/news
Kepler added that the day wasn’t terrible because of her disability; instead it was the fault of the business. “My blindness wasn’t the reason that the day went bad,” she said. “It was the failure on the part of the business to accommodate everybody. I don’t want any other parent to end a day like that because it’s heartbreaking.” Philip J. Wolfe, a member of the deaf community and candidate for Portland City Council, said that he’s “excited to watch the growth and improvements and how that will impact the community from this. I think it will be a model. Not just for the zoo but for any public event that will be more mindful and inclusive. And I’m excited about this project.” But, Wolfe shared that it’s challenging going to public spaces such as the zoo where he cannot spontaneously show up. Instead, he has to plan ahead and make arrangements for an interpreter. Otherwise, he says the overall experience is less enjoyable. Too often Wolfe notes that community events are organized by and in mind for able-bodied people. This means Wolfe and other deaf community members have an added obstacle to being participants of events and enjoying them.
Photo of CAWG group members by Michael Durham, courtesy of the Oregon Zoo Back Row: Kayal Martin, Karen Houston, John Krejcha, Kim Burroughs, Patricia Kepler, Gus the dog, Patty Unfred Front Row: West Livaudais, Evita Rush, Jan Campbell Will Cortez not pictured.
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education KNOWLEDGE TO EMPOWER FAMILIES AND INDIVIDUALS
IN THIS SECTION Placement vs. Location........................................................................... 28 Giving Children a Voice in Their Discipline ............................... 30
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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 staff including physicians, nurses, and psychologists who are knowledgeable about the diagnosis and latest in treatments and therapies. Parents and guardians also offer their perspective and share stories as guest contributors. Topics range from young adult transition 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 live-streaming. 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 live-streaming. Watch past lectures on our website or YouTube®. 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.
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EDUCATION
Placement vs. Location What Does it all Mean?
By Diane Wiscarson and Kelsey Coulter
In the world of special education, “placement” is a concept that causes more confusion than almost any other. Understandable, because “placement” naturally makes one think of a location. In special education, however, placement is the educational program of the individual student and not the physical location where that program is implemented.
student’s services, supports, and skills that are to be taught, as well as the amount of time the student will be removed from the general education environment. Thus, a placement decision goes hand-in-hand with the IEP, because placement determines where the IEP services and supports for the student will occur.
What is “Placement”?
In situations where a more restrictive placement is chosen, such as a self-contained classroom, the IEP must explain why the student cannot be successful in a less restrictive placement. The IEP must also explain what will be provided, and why the student requires a more restrictive placement. The placement discussion should be documented on a placement determination form. The placement options considered and discussed by the team should be noted, along with the advantages and disadvantages of each placement for the student, and the specific reason each option was selected or rejected.
Placement is an individual student’s educational program or the type of setting where the program is administered. Placement must include a variety of options with different levels of supports and services in various environments. An appropriate placement is the least restrictive environment, or educational program, in which the student can be successful. Whether a student is successful is primarily determined by the student’s progress (or lack of) on Individualized Education Program (IEP) goals. For example, a student’s placement on one end of the continuum may be general education all day, except for 60 minutes each week in which the student is removed from general education to receive specially designed instruction for their IEP goals. In the middle of the continuum, a student’s placement might be in a special education classroom for most of the day, and then inclusion with general education peers during lunch, recess, and electives. On the more restrictive end, a placement could be in a special school with 100% removal from general education peers. What is “Location”? Location is geography — the physical place where the student’s IEP will be implemented. Because placement is not the same as where the program is physically located, it may be possible to implement a student’s placement in more than one location. For example, if a school district has a special behavior classroom at two different schools but the program is the same at each, a student with this placement could attend either school location. Once placement is determined, the exact school/geographic location where the IEP will be implemented is usually decided by school district administrators. At the same time, a school district should always look to keep a student as close to the neighborhood school, as possible. A placement should be implemented at the student’s neighborhood school, or when a student cannot be served at the neighborhood school, at the location that is as close as possible to the student’s neighborhood school and home. Placement must be based on the IEP. A placement must be made based on a student’s individual needs, as defined in their IEP. The IEP determines the
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A student’s placement needs to be reviewed and determined at least once a year, usually occurring at a student’s annual IEP meeting. Who Decides? The IEP team often also serves as the placement team. Parents must be a part of the IEP and placement teams, and should be involved in discussing any and all placement options. If the district will be discussing various placement options, it is reasonable for a parent to want information about each option. Parents should ask lots of questions so there is a good understanding of the placements being considered. Districts often allow parents to tour various programs or classrooms before a final placement decision is made. If a parent is unfamiliar with placement options, they should visit what will be considered, before the placement meeting is held. A district employee who has knowledge about the district’s placement options is also required to be part of the placement team. This person is typically identified as the District Representative. Districts are generally required to discuss multiple placement options to determine which option best meets the needs of the individual student. The district should also answer questions, discuss parent concerns, and hear parent input before a placement decision is made. A parent’s placement preference should be considered by the district. However, a parent does not have the final say and does not have the legal right to veto a placement decision – even for their own child. While parents are part of the team that makes the placement decision, and Continued on next page
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Placement vs. Location, continued from page 28 consensus is always preferred, the district representative has the final authority to make the placement decision, even over the parent’s objection. What if a parent doesn’t agree with the placement or location determination?
Fe Be a He ture re d !
If you, as a parent, have concerns about your child’s placement or the location of the placement, raise the concerns during the placement discussion, before a decision has been made. If you disagree, make sure your objection is noted in meeting minutes. If no meeting minutes are taken, write your objection and make sure it is included in the student’s IEP file. The district should issue a Prior Written Notice of Special Education Action (PWN) after the placement meeting. The PWN is sent to the parent and should explain what placement was chosen, why, and whether there was agreement among the placement team. If the parent did not agree with the placement decision, the PWN must state the parent’s objection and reasoning, and why the district refused the parent’s placement preference. When a placement decision has been made over the parent’s objection, there are a few legal options. If a parent has questions about legal options related to placement or location decisions, including time limitations on legal actions, parents should contact the local state department of education or a special education lawyer. Conclusion When placement is discussed, parents should always inquire about the location too. Ask about the options for placements, as well as the options for locations of particular placements. Be sure you give your input, voice your concerns, and make your opinions known. After the placement decision has been finalized, request the documents that outline the placement selected and a PWN which explains why that placement was chosen.
Spectrum Life Magazine uniquely showcases your business to youth, adults and families in the autism community. Our nonprofit is now accepting New Ads and Sponsorships.
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Answer our survey by April 15th, 2020 and you will be entered to win a surprise package worth over $100.00. If you win, we will contact you via email and mail your prize package to you.
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Diane Wiscarson and Kelsey Coulter are attorneys with Wiscarson Law, the only firm in Oregon with a primary emphasis on special education law for families. Since its founding in 2001, Wiscarson Law has shepherded thousands of Oregon and Washington families through the region’s public schools and education service districts on behalf of their special needs children. Find more information at wiscarsonlawpc.com or call (503) 727-0202.
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EDUCATION
Giving Children a Voice in Their Discipline A Learning Opportunity
By Aaron Blackwelder
Our children will break the rules. It goes without saying. Yes, there are many children who will accept their consequences. However, many children on the spectrum struggle to understand that they have done something wrong or will often melt down and can become difficult to manage when they have committed some violation. The word discipline comes from the Latin disciplina which means “instruction” or “knowledge.” We see this word throughout the New Testament as Jesus refers to his disciples – his learners. Often, we consider discipline as another word for punishment and we think of time outs, restrictions, spankings, or the like. The most common model is that the parent or caretaker is the “enforcer” of the rules and thus the inflictor of the consequences. However, if we truly want to “discipline” our children, we need to make it a learning opportunity – and the best way to do this is to invite our children to have a voice in their discipline. I understand that we all have children of different ages, abilities, and levels of understanding. In spite of this, I believe we can still give our children a voice when it comes to the consequences of their actions. Both of my boys are on the autism spectrum and neither are able to be mentally present when it becomes time to correct their behavior. One child will rage and scream while the other completely shuts down. One is boisterous and will yell while the other becomes silent. Either way, neither one is able to handle discipline in these moments and this creates chaos in our home.
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My wife and I have managed to create a system that has worked well with our children when they are in these states. We worked out plans when they were both in a good mood and able to negotiate with us. We sat down with them separately and asked them three questions: What do you expect of yourself? What do you expect from your parents? What should happen when you violate the rules? We had our children reflect and share their thoughts. Both of our children came up with responses that were unique to them but quite similar. We told them to come up with positive “I will” statements rather than negative “I will not” statements. We wanted them to focus on what they should do rather than what they should not do. For example, “I will eagerly help when I am asked” rather than “I will not complain when asked to help.” Their replies were: What do you expect of yourself? • I will be respectful of others. • I will be helpful and contribute to the family. • I will be responsible for my school work. • I will get myself ready for school. • I will use positive language when talking to and about others. Continued on next page
Giving Children a Voice in Their Discipline, continued from page 30
What do you expect from your parents? • I expect them to listen to me. • I expect them to show me respect. • I expect them to give me space when I need it. • I expect them to hug me when I need it. • I expect them to help me when I ask for it. What should happen when you violate the rules? • I will go to my room to calm down. When I am done, I will come talk to my parents. • I will respectfully accept my consequences. • I will respectfully disagree when I feel I am being treated unfairly. This gives us words to use when our children are acting up. For example, when we ask our children to be helpful and they complain, we will remind them, “Remember, you said you would be helpful and contribute to the family.” On the flip side, when our children need something from us they will say, “Dad, right now I need you to give me space.” As a teacher, I have used this structure with students who are behaviorally challenging. A few years ago, I had a young lady who would blow up when she was asked to do an assignment. Often she would refuse to work and would sit in the class grumbling, and when I would come by to help, she would get angry and yell. Her behavior was not helping to create a positive learning environment. However, during a parent meeting, I proposed we create a contract similar to the one I use with my children where she could provide her voice. Her answers were: What do I expect of myself when I come to class? • I will respectfully let staff know when I need to be left alone. • I will respectfully let my teachers know when I feel I have been disrespected by them. • I will ask for help when I need it. • I will make every effort to try to figure out my work on my own. • I will take some time before I speak when I am angry. • I will make every effort to do my best. What do you expect from your teachers?
• My teachers will treat me with respect and discipline me away from the class. What should happen when I violate the rules? • When I realize I am frustrated, I can excuse myself to go to the art room without consequence. • When the teacher notices I am violating my behavior plan, the teacher will give me the option to respectfully participate or go to the art room. • If I choose to stay in class after being given the option to go to the art room but do not respectfully participate, I will be sent to the art room and will receive a referral. This student loves art and has a connection with the art teacher. When she is frustrated, she is able to go into the class and work on her art projects which helps her to calm down. When she has made the choice to go to the art room, she usually only stays a short time and comes back to class ready to work. This contract has helped her feel respected by her teachers. It has given her the ability to let out her frustration through a positive outlet – art. Since we initiated this, her behavior has improved drastically. There were days when she came to class and said, “I’m going to the art room today” and her teachers let her. It is clear that she has not abused this policy, but rather is using it when she needs this. When she is in a rage, learning does not happen and it is better for her to be in art working on something that soothes her for the moment, rather than blowing up in class which leads to more problems throughout the day. She is learning to take ownership of her behavior and things are going much more smoothly for this young lady. Because of the success of this, our school counselor has started using this structure with other behaviorally challenged students. He has seen similar successes with them as well. As adults, it is our job to help our children become people who can manage their own behavior. By giving our children a voice in their discipline, we are not only training them to be reflective and considerate people, but we are also letting them know they are valued and heard.
Photo courtesy of Bell Studios
•M y teachers will respect my space when I need to be left alone. • My teachers will help me when I ask because when I do ask, I can’t figure it out on my own. Aaron Blackwelder is a high school English teacher at Woodland High School in Woodland, WA. He was nominated for Washington State Teacher of the Year 2019. He is married and the father of two boys on the autism spectrum who have shaped him as an educator. He is passionate about creating learning environments for all students. He is the founder of Teachers Going Gradeless, an international community of educators seeking to create more equitable education. You can view his work at teachersgoinggradeless.com.
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health & wellness
IN THIS SECTION Sensory Information Differences ................................................34 Being Autistic by Matteo Musso...................................................37 Ask Spectrum Life .................................................................................38 Barriers to Fitness ..........................................................................40
Photo courtesy of Mary Rebekah Moore
DEVELOPING A SENSE OF WELL-BEING AND WHOLENESS
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HEALTH + WELLNESS
Sensory Information Differences Making Sense of Too Big, Too Small or Distorted Input By Judy Endow
All of us take in information from the world around us through our senses. We have the five senses we all learned in grade school (sight, smell, hearing, taste, and touch) – along with proprioception (body awareness) and another called vestibular (balance). The eighth sense to add to this list is interoception (pulls in information about internal physical sensations).
sensation that being on a small boat in turbulent water can bring even if, in reality, our body is standing completely still on solid ground. Autistics don’t know ahead of time how their sensory systems will deliver information to them. Intensity of incoming sensory information can vary from day to day, from hour to hour and sometimes even from minute to minute. Additionally, it is unknown just which difference (too big, too small, or distorted) might manifest and just how intense an experience might become. Magnified (sensory information coming in too big) In my personal life when sensory information comes in too big, each sense can be affected, but I do not know ahead of time how many senses will be affected. Practical examples of things that can occur include: • seeing dust sparkles cascading from fluorescent lights • feeling pain from raindrops hitting my skin
These senses work together to bring us information from the world around us. For people with autism, the information gained from the senses sometimes comes in a bit differently than it seems to come in for people without autism. The three main effects of this difference are that information may come in too big, too small, or distorted. This can happen in any, some, or all of the senses. Unfortunately, the difference is not constant over time, but instead variable. When this happens, the world can feel unsafe or dangerous. It can feel like being in one of those mirror-distortion houses at carnivals. Imagine if that experience was thrust upon you and you didn’t know what was what – which experiences were real and which were illusions – and furthermore, that you had no way of knowing when it would stop. This can precipitate varying reactions. It may cause the feeling of having physically disappeared or, perhaps the opposite – that one has become too large to fit through the doorway. In addition, we may experience the movement
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• hearing car tires on the pavement on the road outside Sometimes, but not always, this magnified sensory information can be a delayed experience. For example, I often experience the sounds of a party a day after the party. Another phenomenon in my life is that the sound of an ambulance or fire truck siren stays with me for hours. Sometimes there is a continuous loud siren for hours and other times the sound drops in and out, causing startle reactions each time it starts anew. Minimized (sensory information coming in too small) When the sensory information is delivered in a minimized way, autistics often miss out on important things. For example, if the sound of a teacher or boss’s voice is not salient enough to be tracked for a few hours, it can negatively affect our performance. It is difficult because there is no warning signal that lets us know that information is not coming in strong enough so there is no way we can know to seek out Continued on next page
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Sensory Information Differences, continued from page 34 I easily become too hot or too cold. Additionally, my body often feels like it does not fit the furniture. These reactions are due to the distorted sensory information I am getting. I must do something to address the situation if I am to be able to concentrate on anything other than feeling too hot, too cold, or not fitting in the chair correctly. I’ve lived in two houses during my adult life where I experienced the sound of the furnace cycling as a huge rushing wind. It would wake me up at night. I was so glad it was only for a few days at the beginning of the winter season as my neurology was getting used to the furnace sound. This enabled me to wait to turn the furnace on for the season until I was home for the weekend. I think it is really odd that even though the air conditioner makes a similar sound as it cycles, it has never been experienced as a sensory distortion.
what we are missing. Even so, because most people pick up the information, it is often unrecognized that autistics are experiencing sensory differences, and a negative character trait towards the autistic is assumed such as not being interested, ignoring instruction or acting rudely. I have had several students over the years that sometimes run their hands across all the lockers as they walk down the hall. Lots of autistics – students in schools and adults I’ve seen in clinic settings – will all of a sudden lie down on the floor. Often, this is identified as “a behavior” because that is how it looks to the adults in the room. In reality, their sense of proprioception has faded to the point where it becomes difficult to feel their bodies. If the fading is not extreme they may run their hands across the lockers when walking down the hallway. If the proprioceptive fading is more pronounced, the quickest way to get the feeling back to the body is to get as much of the body as possible in contact with a hard surface. Thus, lying on the floor becomes the solution.
We do not know when we are growing up that other people don’t experience the world in the same way we do. I always thought everyone else was just better than me. They were smarter than me and they knew how to get along in life much better than I did. Today I know about the sensory norm and the sensory differences from the norm experienced by autistics. It is important to understand sensory differences in the way information is taken in because it has an impact on reading comprehension, conversation, and life engagement for autistics. Reference: Endow, J. (2019). Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology. This article also appears on Aspects of Autism Translated at www.judyendow.com and is part of a series on Autism and the Sensory System.
Sometimes this solution can pose a problem, like the time an adult client employed the solution in the grocery store parking lot! Her staff reported that she “would not get up until she was good and ready” to do so. Her reality was that she could not get up until her sense of proprioception returned which enabled her to get up. To ensure safety when in the community, this client received proprioceptive input (swinging or jumping on her trampoline) before going shopping. The proactive proprioceptive input meant she was much less likely to lose the feeling of her body over the next couple of hours and thus would not need to employ the solution of laying down either in the parking lot or in the store in order to restore her sense of proprioception. Distorted (sensory information coming in distorted) When sensory information comes in distorted, we have all sorts of strange experiences! When I was a youngster in school I would laugh when my teacher’s voice sounded like it was run through a sound warper. Inappropriate laughter was the report only because nobody else heard and reacted to the funny sound of the teacher’s voice. Thus, my reasonable response given my experience got recorded as “inappropriate behavior”.
Judy Endow, MSW, LCSW maintains a private practice in Madison, Wisconsin, providing consultation for families, school districts, and other agencies. Besides having autism herself, she is the parent of three grown sons, one of whom is on the autism spectrum. Her newest book, Autistically Thriving (2019) can be purchased through her website at www.judyendow.com. www.spectrumlife.org
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HEALTH + WELLNESS Being Autistic
•
By Matteo Musso
I am autistic but what does that mean? It means I’m full of so much that’s unseen. It means that I’m different than most of the crowd. Should I be embarrassed or stand up real proud? I guess that I’d like to be just the latter, And I work hard on it, but what does it matter? “We are who we are,” is my mantra inside. “Don’t worry so much about blending and pride.” I thank God each day for that little voice That reminds me each day, that I have a choice. “You’re perfect, my boy,” says a much louder one. “I’m proud of you and of what I have done.” “I’ve created some humans who are loving and kind, Who are brilliant and unique, who’ll give sight to the blind.” Autistics are teachers that society craves, To open their eyes to more simple ways. We have no choice but to figure it out, How to find peace and what life is about. Hurt tummies, loud sounds that escape from our mouths, Incessant screaming and jumps up and down. Trapped thoughts held hostage, intelligence waiting, For someone to see through the façade that’s prevailing. Purposeful bodily actions we share All messages for you to receive, if you dare.
You may not want it, many do not. But we’ll keep on sharing, just give it a thought. It may require some action from you, A deep inner change or acceptance that’s new. We’re persistent and strong, relentless some say, Also sensitive and knowing but that’s hidden away. We want to have friends but require some things, Like patience and excitement of gifts that we bring. Society wants us, they just may forget, They want some reminders of things that have slipped. Speaking without requiring a word, Tweet with your actions and heart like a bird. Let’s open our hearts and release some more love. For everyone waiting, we give gentle shoves. We might not present in the usual way. But what do you want? We’re not made that way. Happy Autism Awareness and Acceptance Month! Let’s open up to all the possibilities life presents. Don’t be afraid. You’re safe. We don’t have to all be the same. Autistics forge new possibilities each day. We’ll help you – you just have to let us. Love, Teo (written in April 2018 but applicable in 2020 too!)
STORIES from the SPECTRUM Autism from an Autistic perspective
Matteo Musso is a 16-year-old teen with autism. His vocal abilities are ever-increasing, but for now, he continues to communicate through his letter board, expressing himself beautifully, one letter at a time. He lives with his parents in Northern California. Matteo has been invited to speak at the Mayo Clinic in Minnesota, the Lincoln Center in New York, and for autism groups, conferences, schools, colleges, universities, therapy groups, social groups, book clubs, and churches. His message of “assuming intelligence even if we can’t prove to you what we know,” is changing the way autistic people are educated and treated on a daily basis by those who teach, care for and love them. Matteo’s presentations also teach us how to deepen our relationships with those on the spectrum. He has written and published 5 books, the first of which was Handbook of Us: Understanding and Accepting People with Autism. Matteo loves art, poetry, swimming and music. He loves food, too, and is affectionately known as “The Poetic Foodie.” Learn more at www.matteomusso.com and YouTube channel: Matteo Musso Official at bit.ly/matteomussoofficial. 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 across the lifespan for our community. Dear Spectrum Life: I recently gave birth to my first son. My husband (who is on the spectrum) has a six-year-old daughter from his first marriage who is also autistic. We wanted to know what kinds of things we should look out for in terms of development with our son. - New Mom in Milwaukie
Dear New Mom: Congratulations to you and your husband! May your parenting journey be filled with love, joy, and adventure! Whether or not your son turns out to be on the autism spectrum, we are glad your family is part of our diverse community! All children, including those on the autism spectrum, develop at different rates in different areas. Areas where autistic children (and adults) commonly have challenges include executive functioning (organization), language (social and learning), motor skills, perception, and sensory filtering. Some children show hints of future problems within the first few months of life. In others, symptoms may not show up until 24 months or later. Some children seem to develop typically until around 18 to 24 months of age and then they appear to stop gaining new skills, or they may appear to regress or lose the skills they once had. Children may have delays in language, social, and learning skills, while their ability to walk and move around is about the IN same other children their age. They might be very good THISasSECTION at putting puzzles together or solving computer problems, but they might have trouble with social activities like talking or making friends. Children on the spectrum might also learn a hard skill before they learn an easy one. For example, a child might be able to read long words but not be able to tell you what sound a “d” makes.
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Some Common Signs for Autism in Children • Does not respond to their name by 12 months of age • Does not look at something when another person points to it • Avoids eye contact • Avoids or resists physical contact • Has unusual eating and sleeping habits • Has trouble understanding other people’s feelings or talking about their own feelings • Has delayed speech and language skills • Has balance impairments or challenges with fine and gross motor skills • Repeats words or phrases over and over (echolalia) • Gives unrelated answers to questions • Gets upset by minor changes in routine • Has obsessive interests • Has challenges with impulse control • Has sensitivity to tags, clothes or fabrics • Flaps hands, rocks body, walks on toes, or spins in circles • Prefers to play alone • Lines up and organizes toys or objects in a specific way • Likes parts of objects (e.g., wheels) • Talks in a flat, robot-like, or sing-song voice • Does not understand jokes, sarcasm, or teasing • Reverses pronouns (e.g., says “you” instead of “I”) • Has unusual reactions to the way things sound, smell, taste, look or feel If you have a concern with the way your child plays, learns, speaks, acts, and moves, talk to your child’s doctor and share your concerns. Don’t wait. Acting early can make a real difference. Your child’s doctor can perform a developmental screening. Developmental screening is a short test to tell if children are learning basic skills when they should, or if they might have Continued on next page
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Ask Spectrum Life, continued from page 38 CDC offers parent-friendly materials that are research-based, free, easily accessible and customizable.
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delays. Screening is not meant to establish a diagnosis for the child, but rather to help professionals determine whether a more in-depth assessment is the next step. During a developmental screening, the doctor might ask you some questions or talk and play with your child during the exam to see how they learn, speak, behave, and move. A delay in any of these areas could be a sign of a problem. All children should be screened for developmental delays and disabilities during regular well-child doctor visits at 9 months, 18 months, 24 or 30 months. Additional screening might be needed if a child is at high risk for developmental problems due to preterm birth, low birth weight or other reasons. Children who have siblings or other family members who are on the autism spectrum have higher odds of also being autistic. Learn the Signs. Act Early. Children develop at their own pace, so it can be difficult to tell exactly when a child will learn a particular skill. But, there are age-specific developmental milestones used to measure a child’s social and emotional progress in the first few years of life. The Centers for Disease Control and Prevention’s (CDC’s) “Learn the Signs. Act Early.” program aims to improve early identification of children with autism and other developmental disabilities so children and families can get the services and support they need as early as possible.
From birth to age 5, your child should reach milestones in how they play, learn, speak, act, and move. Track your child’s milestones from age 2 months to 5 years with CDC’s easyto-use milestone tracker app. Photos and videos in this app illustrate each milestone and make tracking them for your child easy and fun! Features: * Add a Child – Enter personalized information about your child or multiple children. * Milestone Tracker – Track your child’s developmental progress by looking for important milestones using an interactive, illustrated checklist. * Milestone Photos and Videos – Know what each milestone looks like so that you can better identify them in your own child. * Tips and Activities – Support your child’s development at every age. * When to Act Early – Know when it’s time to “act early” and talk with your child’s doctor about developmental concerns. * Appointments – Keep track of your child’s doctors’ appointments and get reminders about recommended developmental screenings. * Milestone Summary – Get a summary of your child’s milestones to view, and share with or email to your child’s doctor and other important care providers. Download it free on iOS and Android devices in English and Spanish! For more information about the Learn the Signs, Act Early Program and CDC Milestone Tracker App, visit: www.cdc.gov/ncbddd/actearly Thank you for being a proactive part of our community! We hope this information helps!
Karen Krejcha is the co-founder of Autism Empowerment where she serves as Executive Director. She is Editor of Spectrum Life Magazine and a vibrant public speaker. Karen was diagnosed on the autism spectrum in her 40s, after the diagnosis of her two children. She has been married to John for over 27 years and is devoted to promoting a culture of acceptance and empowerment within the autism community and the world at large.
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HEALTH + WELLNESS
Barriers to Fitness
And ways to knock them down
By Ryan Lockard, CSCS, CSPS It is no secret that exercise helps you live a longer and healthier life. Studies have shown that it can reduce your risk of cardiovascular disease and other chronic illnesses, reduce stress and anxiety, as well as provide a plethora of other positive physical, mental, and emotional benefits. But did you know that only 1 in 5 American adults currently meet the recommended 150 minutes of moderate activity per week? If the positive benefits of exercise are well known, then why is it that 80% of American adults do not take advantage of them? Let’s take a look at some possible barriers that may get in the way and discuss solutions. Parenthood Whether or not you or your children identify as neurotypical or neurodiverse, once children enter your life, it is simply no longer about you. Gone are the days of knowing which bars have the best happy hours throughout the week or meeting your friends after work to plan your next epic vacation. Now your days are filled with shuffling schedules to make sure that each child gets to school, activities, and appointments on time, all the while making sure to provide meals, attention, love, and support.
The part that can easily get forgotten is the importance of self-care. You need to take care of yourself and make sure that you’re getting enough “me” time to refuel so that you can continue to provide. Lack of Time Whether you are a parent or not, you likely identify as BUSY. Between going to and from school, work, appointments, activities and spending time online, when is there time for you to get your exercise in? You have to MAKE time. If it is a priority, you will make time. The issue is that we often don’t see exercise as a priority because of everything else that we’re juggling in life, yet we know that exercise actually can help us deal better with the stress we are having. So how do we make time? There are several ways to do this: 1 – Wake up earlier: This may not be the most popular option, but it is a way to make more time in your day, and after you do it regularly for a few weeks, it will become routine. Get up before the kids get out of bed and go to the gym or go for a run. If you can’t leave your home, exercise there and create your own home gym environment.
For parents of children on the autism spectrum or with other special health care needs, there may be additional scheduling requirements happening in your daily life, making you feel busier than ever before.
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2 – Take advantage of the appointment times: At Specialty Athletic Training, we provide athletic training and support for youth and adults with special health needs. Caregivers wait separately so during this time, we encourage them to go do their own workout. Not near a gym? Go for a walk and get some fresh air during those times. It will give you time for self-reflection and help clear your head from the chaos of life. Continued on next page www.spectrumlife.org
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Barriers to Fitness, continued from page 40 2 – Find a trainer: Maybe you just joined a gym, but now you don’t know what to do. Hiring a personal trainer can be the support system that you need, as well as provide the guidance that you’re searching for. With the explosion of the digital media era, trainers now offer online options as well. Again, find one that you gel with and that you enjoy being around. 3 – Go Digital: Gyms are too intimidating for many. The great thing is that the internet has several online communities that you can join that are super supportive and provide a similar community as joining a gym. One example is Peloton Digital. For under $15/month you get access to various types of classes (many that don’t require any equipment) that are taught by a variety of trainers. You can encourage others during the classes and also follow their fitness journey as well. Energy and Motivation
3 – Utilize lunchtime or breaks: Use your break time or lunchtime at work or school to get a quick 30-minute bout of exercise in. It is a great way to break up your day and re-energize. 4 – Put it on your schedule and prioritize you: It is important to remember that we all have 24 hours in a day. As cliché as that sounds, it is 100% true. If you make exercise a priority for yourself, you will find ways to make it happen. Finding Community Exercising by yourself can be daunting, especially if you’ve never really done it before or are trying to jump back in and create a new routine. It is important to find an exercise buddy to help encourage you, as well as hold you accountable. Here are some ways to go about finding that exercise buddy or fitness community in-person or online. 1 – Join a gym: Finding the right gym can make all the difference. The people and camaraderie can be one of the best support systems for your fitness journey and life in general. Test several out and find one that you can relate to and where you enjoy the vibe.
These are just some of the common barriers that adults face that make it hard to reach that recommended 150 minutes of moderate activity per week. As always, I hope that you have found this information helpful. Please note that although this particular article slants more toward parents, the strategies within, particularly regarding prioritizing time for exercise and finding community, can be adapted for autistic adults and youth. Making exercise a priority is not easy by any stretch of the imagination, but I cannot stress the importance of it enough. Are you looking at making a change and becoming part of the 20% of American adults that meet the recommended exercise guidelines but need help? Please send me an email at Ryan@SpecialtyAthleticTraining.com or give me a call at (503) 863-0512 and I’d be more than willing to help guide you in the right direction. Photo courtesy of Lavinia Nitu - Ma.Ni. Photo Studio
Photos courtesy of Mary Rebekah Moore
The hardest part of exercising is getting started. The average American diet makes us very lethargic and feel like we don’t have very much energy. By investing in yourself and exercising, other healthy habits tend to follow. Increased water intake and healthier eating habits are just examples. These all play important roles in improving your energy levels, which in return will keep you motivated to keep putting in the work.
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), Certified Special Populations Specialist (NSCA), and currently serves on the board of directors for the Autism Society of America and the Central Oregon Disability Support Network. He can be reached at Ryan@SpecialtyAthleticTraining.com or www.SpecialtyAthleticTraining.com.
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therapy
IN THIS SECTION Neurotherapeutic Pediatric Therapies......................................................43 Upcoming Autism Empowerment Events.............................................46
Photo courtesy of Neurotherapeutic Pediatric Therapies
THERAPEUTIC OPTIONS AND RESOURCES
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THERAPY
Neurotherapeutic Pediatric Therapies Therapy and support for the entire family By John Krejcha Neurotherapeutic Pediatric Therapies is a nonprofit organization that offers a wide range of specialized therapy services. They have been serving youth, adults, and families in the Portland metro and Southwest Washington area for over 30 years with a focus on children with special health needs. Spectrum Life Magazine recently connected with Karen Brelje, Executive Director to learn more about how Neurotherapeutic Pediatric Therapies is positively impacting lives of children and families in our region. Please tell us about Neurotherapeutic Pediatric Therapies. Thank you so much for allowing us to share more about Neurotherapeutic Pediatric Therapies, which we sometimes shorten to Neuro. My name is Karen Brelje and I am Executive Director of Neuro and my husband is Brent Brelje who serves as the organization’s Board President. We have four adopted children, three of whom have special health needs. In the 1990’s, our children with special needs attended a clinic called Sensorimotor Therapies. In 1997, when the clinic began to falter (due to a change in management), Brent and I bought it. I tell people somewhat in jest that the main reason behind the purchase was “so I wouldn’t have to drive to Portland three times a week for therapy!” At that time, Neuro was a small clinic in Oregon City providing 135 client visits a month. Over the years and through some rough patches, Neuro has grown to seven locations with approximately 3,000 client visits a month. I credit our background as parents, not practitioners, as one reason for our growth. We truly understand how difficult life can sometimes be for parents with a special needs child. We have a heart, not just to help the child, but also for any struggles and trauma experienced by the parents and siblings. Brent credits Karen’s background as a registered nurse as another reason for the clinic’s success. “It has imbued the clinic with a holistic approach to support the entire family.” Tell us about the road from transitioning from a for-profit to a nonprofit organization. Between 1997 and 2007 Neuro struggled financially due to our core value of never turning away kids on Oregon Health Plan (OHP). OHP reimbursement does not cover the cost of providing services for Physical Therapy (PT), Occupational Therapy (OT) or Speech Therapy. In a for-profit clinic, this funding gap can be covered by private insurances that pay more for services.
We’ve always had a heart to serve all families in need; it just took us a while to align our business structure with our heart. Thus, we transformed Neuro from a for-profit organization to a 501(c)3 nonprofit organization. Becoming a nonprofit in 2007 was the best business decision we have made and it impacts and directs the work we are able to do on a daily basis. Being a nonprofit now influences every decision we make and it has opened up opportunities that never would have been available to us as a for-profit business. We are able to leverage community support to start programs which we can then grow to self-sustaining. We can think outside the box and we are not limited to providing only services that insurance will cover. If a family is in crisis, we get them in for services and figure out funding later. We attract staff who want to be part of something bigger than just a therapy practice. All of these things allow us to provide the best services for all families, not just those with good insurance. This is reflected by our mission: To positively impact kids, families, and society for the future by providing the best therapy services for all, regardless of their ability to pay, and by educating parents, teachers, other professionals, and our community regarding the unique needs and potential of our clients. Do members of your staff have a personal connection with someone on the autism spectrum or other special health needs? Almost everyone who works at Neuro has a connection with someone with special health needs. It is what draws them here and what keeps them here. The majority of our board members directly live the life of a family with special needs. I have three kids with special needs. We are very much in the trenches with our families and we know what it is like to walk in their shoes. This gives us a special empathy and reminds us daily why we are here. Please share a few details about the five service areas that you offer. Physical Therapy (PT), Occupational Therapy (OT) Neuro started by providing just PT and OT services. We focused on Sensory Integration therapy, which in 1997 was not popular or well-known. Insurance companies did not want to pay for it but it worked, and because it worked we continued to provide these services and we continued to grow. Families knew it worked and therapists knew it worked. Society and the medical community have now caught up with us! Continued on page 44 www.spectrumlife.org
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Neurotherapeuthic Pediatric Therapies, continued from page 43 Mental Health Therapy Adding mental health services was a dream that we had for many years. Too often we would see the struggles and trauma in a family that could not be adequately addressed by OT or PT. A substantial grant from the Murdock Charitable Trust and many other local grantors allowed us to start and grow our very robust program. Mental health services allow us to more fully serve our families and to fully support them on their journey. Raising a child with special needs or being a child with special needs is not easy. Having a multifaceted staff helps us to support our families from struggling, to coping, to thriving, and really sets us apart.
improves their care. Having PTs, OTs, counselors and doctors all working together to coordinate care ensures a more holistic and reliable service for our families. Speech Therapy We have just recently added Speech Therapy services and unfortunately have to limit these services due to extremely poor reimbursement rates. We are not even able to cover therapist salaries with the current reimbursement rates much less cover any overhead. These services are provided strictly as a community service. What age range and ability levels do you work with?
Medical Program Our medical program was part of our mental health expansion and allows us again to more fully support our families. Health care can be so fragmented; having multiple disciplines available for our families simplifies their lives and
Our mental health services are available for all ages with a focus on special needs or family issues. PT, OT and Speech services are available primarily for ages 0-18 with the possibility of continuing services beyond 18 if a client is appropriate for a pediatric clinic setting.
Continued on next page
Photos courtesy of Neurotherapeutic Pediatric Therapies
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Neurotherapeuthic Pediatric Therapies, continued from page 44 How would somebody get started to determine what would be best for them? If you have any concerns about your child, it is best to come in for an evaluation. Your doctor can help you decide which discipline you should be referred to or you can make an appointment with Dr. Watters, our Naturopath. She can help you decide if services are needed and where it would be best to start. Where are your clinics located and how can people contact you? We have clinics in Oregon City, NE Portland, Hillsboro, McMinnville, Wilsonville, Canby and Medford. • • • • • • • •
Oregon City (Main Office): (503).657-8903 Mental Health and Medical: (503) 372-5147 Canby: (503) 263-8903 Hillsboro: (503) 747-5359 McMinnville: (971) 261-2159 Medford: (541) 613-6505 NE Portland: (503) 257-3878 Wilsonville: (503) 355-3223
We invite you to see videos, read success stories, and learn more about Neuro at our website: www.nt4kids.org. You are also welcome to follow us on Facebook at: www.facebook.com/nt4kids.org What are your future goals and vision for Neuro?
Photos courtesy of Neurotherapeutic Pediatric Therapies
Please share a story or two about the growth you’ve seen in your clients who are on the autism spectrum.
Neuro has experienced incredible growth over the last few years. Our future goals and vision are to ensure that Neuro is here for many, many more years. We expand only as need dictates, but if we identify a gap – in services, funding, location, etc. – our hearts move us to fill that gap for families in need.
There are so many success stories that I don’t know where to start! One child does stand out though. We had seen this child for a number of years and when he first started, we had to create a very small private space where he could be treated. He could not be out in the open gym; it was way too overwhelming. The first time I saw the therapist treating him in the open space, I was blown away. Now he just comes into the clinic like it is no big deal. I remember another child who was completely out of control. She got kicked out of multiple special education programs and could not cope in the most basic school setting. Today she is a working adult, raising her own child. We do not “cure” kids but we give them tools to help them be able to cope with the very overwhelming world they live in. Most important for me is the impact we can have on family dynamics. It can be overwhelming to parent kids on the spectrum or with other needs. My goal is always to help families understand their kids and their behaviors. If we can understand where our kids are coming from, we can begin to parent them effectively. We have a plaque in the gym that says, “Every Behavior is a form of Communication”. When we understand our kids’ behaviors, we can respond appropriately.
“Lucky” Johnny O’ 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 a cat named Zula. While John is the only one in the family who is not on the autism spectrum, he is a neurodiverse and loving ally.
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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 and www.AutismEmpowerment.org
MARCH Thursday, March 26th READCON 2020 Shahala Middle School 601 SE 192nd Ave, Vancouver, WA 98683 6:00 pm - 8:00 pm Free Sci-Fi Fantasy Family Night event & Book Fair with a LEGO theme! Contests & Prizes! Star Wars! Proceeds benefit libraries and Autism Empowerment.
Autism Empowerment and Spectrum Life Magazine appreciate your support: www.AutismEmpowerment.org/donate
MONTHLY Autism Empowerment offers ongoing Enrichment, Support Groups, Social Clubs and Volunteer Service opportunities. Please see our website for dates, times and Facebook group links.
Monday, April 6th
Ongoing Enrichment: • Autism Empowerment Podcast • SpectrumLife.org website • AutismEmpowerment.org website
City of Vancouver Autism Proclamation Vancouver City Hall 415 W. 6th St., Vancouver, WA 98660 6:30 pm - 7:15 pm (arrive at 6:15 pm)
Ongoing Service & Volunteerism: • Autism Serves Kids Care Club • Autism Serves - Volunteerism for all ages
Join Autism Empowerment and friends at Vancouver City Hall as the Mayor proclaims April to be Autism Acceptance Month.
Ongoing Social Activities: • SW WA Tween and Teen Social Club (11 - 19)
APRIL
Wednesday, April 8th AWEtism We Embrace (AWE) Meet & Greet Dick’s Kitchen & Primal Burger 3312 SE Belmont St, Portland, OR 97214 6:30 pm - 8:30 pm (drop-in anytime!)
Ongoing Support Groups: • Adults on the Autism Spectrum (peer-led) • AWEtism We Embrace (Adults, Parents, Allies) • Parents of Tweens, Teens & Young Adults
AWE is hosting a casual meet and greet for autistics and allistics, family and friends to socialize! All ages welcome. Optional food purchases, including gluten-free and vegan menu options.
Connect with us online!
Sunday, April 29th
@SpectrumLifeMag @AutismEmpowermt
Autism Society of Oregon Autism Walk Oaks Amusement Park, Portland, OR 9:00 am - 11:00 am
AutismSpectrumLife
Autism Empowerment and Spectrum Life Magazine will be exhibiting. Come by and say hello!
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/SpectrumLifeMagazine /AutismEmpowerment
Autism Empowerment
Autism Empowerment
FAMILIES: HELP US IMPROVE THE CARE YOUR LOVED ONE RECEIVES AT CARD! Take our survey for CARD parents & caregivers.
We care deeply about the work that we do at the Center for Autism and Related Disorders (CARD). As we organize our union for stability, respect, and support, we want to hear from families who rely on CARD clinic services. How can we improve your experience?
SURVEY: bit.ly/cardunited
ABOUT CARD UNITED / OFNHP
CARD behavioral therapists and support staff are organizing our union with the Oregon Federation of Nurses and Health Professionals to improve working conditions at our clinics. By joining together, we have more power to advocate for our clients and the families and communities we serve.
Get in touch: @CARDUNITED • cardunited@ofnhp.org
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As an Independent Apartment Community (IAC), Stephen’s Place offers positive living options for adults with developmental disabilities. fo With forty-one modern apartments, our focus is on community; empowering and enabling each resident to be a productive contributing member of their community.
Call or email us to schedule a tour (360) 984-3600
info@stephensplace.org 501 SE Ellsworth Road, Vancouver, WA 98664
Apartment rent is inclusive of all meals, supportive services, nursing & ADL assistance and programming including: Job Skills Training, Placement & Coaching Life Skills Training Ho Horticultural Therapy Group Fitness Classes & Yoga Arts & Crafts Movie Nights Sporting Events Group Outings to Local Attractions Transportation Services We also offer a Day Program to people who live outside of the Stephen’s Place community, but would like to build peer relationships
Learn more about us @ www.stephensplace.org
and participate in activities.