Spectrums Magazine Winter 2016 from Autism Empowerment

FREE PORTLAND AND SW WASHINGTONâ&#x20AC;&#x2122;S ONLY MAGAZINE FOR AUTISM SPECTRUM DISORDER

WINTER 2016

MARTIAL ARTS & AUTISM COMMUNITY INCLUSION HOLIDAY EXPECTATIONS EDUCATIONAL TOY GUIDE A LITERARY HERO FOR ALL ABILITIES BLACKBELTS FOR BUTTERFLIES

meeting sensory needs with comfort, warmth & activity TwiddlesÂŽ are soft, therapeutic aids that help those with autism to calm, engage and self-regulate. Children with autism need help making the right neurological connection to find their "just-right" zone. Providing therapeutic comfort or activity as needed, Twiddles assist in organizing tactile, visual and auditory input. Cute, cuddly and playful, Twiddles make a reassuring addition to your array of behavior modification resources. Each Twiddle is made from a cozy, durable fabric, with four detachable gadgets, a Velcro pull-tab, and a pocket for personal items. Twiddles are machine-washable, and safety-tested to meet US and EU standards.

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WINTER 2016

contents DEAR SPECTRUMS READERS: END-OF-YEAR APPEAL FEATURED SECTIONS ADVOCACY

Striving for Disability Equity Northwest Health Foundation is working daily to ensure equity.

LIFESPAN

12 14

20 24 26

From Surviving to Thriving Local advocate Jonathan Chase releases his first book on classroom accommodations and strategies.

Educational Toy Guide Ideas and strategies for meaningful gift giving.

Special Celebrations Everyone deserves to be celebrated. Advocating for Community Inclusion Advocate Ivanova Smith shares how she is working for inclusion in the community.

RECREATION

EDUCATION

A Literary Hero for All Abilities Local author Brian Tashima draws on personal experience for his fantasy fiction series. Martial Arts and Autism Learning discipline and respect through the martial arts community. Holiday Travel Helping those with extra needs manage travel during the holiday season. Dear Spectrums Readers Support Autism Empowerment and Spectrums Magazine with a tax-deductible donation.

HEALTH + WELLNESS

Great Expectations Setting the bar low for high expectations around the holidays.

Holidays and Breaks in Routine Tips and strategies for the lapse in steady routine.

Blackbelts for Butterflies From tragedy comes the butterfly effect.

THERAPY

42 44 46

Introduction to State DD Services Tapping into local disability services and state systems. Provider Partner Directory Categorized listing of local providers. Upcoming Autism Empowerment Events Ongoing and monthly events.

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FROM THE PUBLISHER

WINTER 2016 | VOLUME 4, ISSUE 3 SPECTRUMS MAGAZINE TM A program of Autism Empowerment TM Karen Krejcha, Autism Empowerment, Publisher Mailing address: Autism Empowerment P. O. Box 871676 • Vancouver, WA 98687 (360) 852-8369 www.AutismEmpowerment.org spectrums@autismempowerment.org

This holiday season, Autism Empowerment is thankful for you – the diverse members, advocates and allies of the autism community. Although we are each traveling on a unique journey, it does not have to be on an isolated road. There are fellow travelers willing to share their stories and lend wisdom and support. Today, let your pit stop be with Spectrums Magazine as you refuel for the journey ahead.

Connect with us online! /SpectrumsMagazine /AutismEmpowerment

I recently had the privilege of serving as Master of Ceremonies for the 2016 Candidates Forum on Disabilities in Southwest Washington. It was there that I met guest speaker, Ivanova Smith, an autistic disability-rights advocate from Washington who wrote a passionate feature about the importance of community inclusion for this issue’s Stories from the Spectrum series.

@SpectrumsMag @AutismEmpowermt SpectrumsMag

This Winter issue of Spectrums brings a diverse range of educational, entertaining and empowering pieces that highlight and celebrate growth in our community. You’ll find articles and interviews from self-advocates, local authors, grassroots groups and allied health organizations. You’ll discover help for the holidays—whether it be changes in routine, tips for travel or managing holiday expectations. One of the more touching pieces in this issue features the powerful butterfly effect of Blackbelts for Butterflies. It ties in with our cover story about Martial Arts and Autism. Be sure to read both!

Autism Empowerment

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 SpectrumsMagazine.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. © 2016 All rights reserved.

We believe that all people in the autism community deserve a life free of stigma and full of opportunity for education, employment, relationships and personal growth. We invite you to join us as we positively change the world. Be a beautiful butterfly and spread your wings for positive change. Thank you for your support!

ON OUR COVER

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Photo by John Krejcha

Karen Krejcha Executive Director & Co-Founder: Autism Empowerment™ Editor: Spectrums Magazine™

Our feature article on page 20 highlights the benefits and fun that martial arts brings to youth and adults in the autism community. Local teen, Zachary Borghello, poses in Vancouver with martial arts instructors, Mr. Doug and Mr. Ken.

the

A GRASSROOTS COMMUNITY MAGAZINE, Spectrums is a program of Autism Empowerment. With a mission of promoting a culture of acceptance, enrichment, inspiration and empowerment, these area professionals help guide the magazine’s future content providing expertise, insight and direction. We are honored to be partnering with some of the region’s finest self-advocates, professionals, parents and experts in the field of autism. AMY DONALDSON, Ph.D., CCC-SLP • Portland State University Autism & Child Language Disorders Laboratory asdchildlab.research.pdx.edu/home.html Amy L. Donaldson is an Assistant Professor in the Department of Speech & Hearing Sciences at Portland State University (PSU). Her research focuses on the assessment and intervention of social communication skills in children with Autism Spectrum Disorder (ASD) within the natural environment, as well as intervention efficacy. She is also Director of the Autism and Social Communication Lab. COURTNEY FREITAG • Founder and Former Publisher of Spectrums Magazine Courtney Freitag founded Spectrums Magazine in 2013 and continued publishing quarterly issues until the Autism Empowerment acquisition in 2016. Her experience in communications, graphic design, writing, editing and marketing spans 20 years, complemented by raising a son on the spectrum.

JOHN KREJCHA • Autism Empowerment www.autismempowerment.org John Krejcha is co-founder of Autism Empowerment and serves as Program Director where he oversees Community Outreach and facilitates a monthly support group for dads. John was a Community Champion finalist at the Greater Vancouver Chamber of Commerce Business and Leadership Awards in 2014. John is married to co-founder, Karen, and is father to two amazing sons. All three are diagnosed on the autism spectrum..

TARA O’GORMAN, MSW • SpectrAbilities www.spectrabilities.com Tara O’Gorman, MSW, is an independent consultant and advocate for individuals and families living with Autism Spectrum Disorders (ASD) and provides consulting for organizations working within the ASD community. She is a group facilitator for adolescents and young adults with ASD and is a proud mom to two sons, including an Asperger’s teenager.

HEATHER PARROTT • Parent Advocate Heather Parrott is married to Chris and is a homeschooling mom to Zachary, Ryan and Joshua. She became passionate about autism education when her oldest son was diagnosed with Asperger’s. She is a volunteer with Autism Empowerment and worked on the Autism and Scouting program. She enjoys writing, working with the Boy Scouts of America and watching her youngest play baseball.

BRIAN TASHIMA • The Spectraland Saga www.spectralandsaga.com Brian Tashima is the author of The Spectraland Saga, a young adult science fiction/fantasy series about a teenage guitarist on the autism spectrum who travels to a world where music is magic and autism is a superpower. The first book in the series, Secret of the Songshell, was a finalist in the 2012 USA Best Book Awards for fantasy fiction, and the second book, Mystery of the Moonfire, was released in October 2015. Book Three is scheduled for a 2017 release. www.spectrumsmagazine.org

advocacy EMPOWERING CHANGE WITHIN THE AUTISM COMMUNITY

IN THIS SECTION Striving for Disability Equity.......................................................................8

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Come learn about services and programs of the DDA in Clark County Wednesday, Jan. 25 from 4-6:30 p.m. Vancouver Regional Library, Columbia Room 901 C Street, Vancouver

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.

The Individual and Family Services Waiver helps support families who have a family member with a developmental disability who is three years old or older by providing a choice of services to help maintain and stabilize the family unit.

Services that may be available depending upon eligibility:          

We invite clients, their families and those wanting more information about services provided by DDA to come join us to meet DDA staff and our community. Providers and learn about: • The new IFS Waiver and Eligibility • Respite in the Community • Peer Mentoring • Community Guide and Engagement • Person Centered Planning Facilitation • Behavior Support and Counseling • Supported Parenting For more information, contact: Kris Jorgensen-Dobson (360) 725-4263 or Teresa O’Donnell (360) 725-4273

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

FREE Sensory Jump Nights!

G6 Airpark has generously partnered with Autism Empowerment to provide a free Sensory-Friendly Jump Night for youth, adults and family in the autism community. Thursday, March 9 (6:30-8:30 p.m.) Vancouver location 2200 NE Andresen Road, Suite J

Thursday, June 8 (6:30-8:30 p.m.) Portland location 10414 SE Washington Street

Event is free, but RSVP with number of jumpers is required. A signed waiver is required to jump. *G6 requires that Grip Socks are worn which they sell for $2.00 a pair or bring your own G6 Grip Socks. If sock cost is a hardship, let us know when you RSVP and Autism Empowerment will cover the cost. Space is limited and a response in advance is required.

RSVP, volunteer or more information: (360) 852-8369 or info@autismempowerment.org www.AutismEmpowerment.org www.g6vancouver.com

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ADVOCACY

Striving for Disability Equity A journey to greater understanding

By Laura Nash, Northwest Health Foundation Northwest Health Foundation’s Communications Coordinator, Laura Nash recently connected with Spectrums Magazine to share with readers insight about the ways their foundation strives for disability equity and works to be a strong ally to the autism and disability communities.

So, we’ve committed to deepening and building relationships with disability communities. Our board and staff are confronting our personal and organizational ableism and finding real ways to make change now. At our last two board retreats in 2015 and 2016, disability rights leaders led trainings and conversations with our board members and some staff.

What is Northwest Health Foundation, and what are your equity priorities?

At all of our meetings we’ve begun the practice of asking attendees how best we can help them participate. As for communications, we’ve started including closed captioning in our videos and image descriptions on photos. We also created a budget for interpretation services. And, perhaps most importantly, we’re talking to currently funded partners about how they integrate inclusion of people with disabilities into their work.

Northwest Health Foundation is an organization with a vision for health and a focus on action. We believe everyone in Oregon and Southwest Washington should have the opportunity to lead a healthy life, and we strive to accomplish this vision through three primary avenues: grant making, community building and advocacy. NWHF knows that our resources are best spent in the communities that face the biggest barriers to health, which is why we chose three equity priorities to guide our work: race/ethnicity, including immigrant and refugee status; geography; and physical, mental and developmental disability. Too often, where we’re born, the color of our skin or living with a disability determines our chance at a healthy life. Our commitment to promoting equity is a commitment to ending this reality. Why is it important to NWHF to have disability as an equity priority? When our board decided to make a commitment to equity, they took a hard look at the data and clearly saw that race/ethnicity, geography and disability were the clearest predictors of how healthy, or unhealthy, a person would be throughout their life. How does NWHF help support organizations representing communities of people with disabilities? To be honest, we haven’t done the best job supporting organizations representing communities of people with disabilities. We looked at our numbers a few years ago and discovered that, despite our commitment to disability as an equity priority, we only spent about $1.50 out of every 100 grant dollars in 2012 on grants to organizations representing people with disabilities. In 2015, we spent even less. That’s not okay. However, improving this percentage very soon will be hard, given we made 5-year commitments to a set of grantees for the majority of our resources a few years ago.

Funders have a responsibility to make more grants to organizations led by and for people with disabilities, AND we need to find other ways to prioritize disability communities: in our organizational practices, in our physical and digital spaces, in the choices we make to fill empty board and staff positions, possibly in our advocacy work, and in other ways we haven’t even thought of yet. Tell us about your Learning Together, Connecting Communities initiative. What was the purpose? How did you choose the organizations that participated? When we realized how little we had been investing in disability communities, we decided to take immediate action. We selected eight organizations led by or engaging communities of people with disabilities, which became our Learning Together, Connecting Communities cohort. Through Learning Together, we aimed to: learn more about efforts in Oregon and Southwest Washington that are engaging and led by people with disabilities; promote self-determination and build relationships among and with these communities; and use this process to inform NWHF’s organizational practices. Each organization in the cohort sent representatives to two gatherings, where we spent time conversing with and learning from each other. The cohort was diverse in missions and perspectives. Some organizations were led by community members with disabilities, some incorporated community members with disabilities as part of a larger picture. Two examples: Autism Empowerment, which is led by people on the Continued on next page

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Equity, continued from page 8 autism spectrum and/or their family members, with the goal of enriching and empowering the lives of people in the Autism community. But also, Native American Youth and Family Center, a larger organization, which sent representatives specifically from its Independent Living Pathways program – a program for youth aging out of foster care, many of whom experience learning disabilities. One of the organizations that participated was Autism Empowerment. What have you learned about the autism community by working with an autistic-led organization? I’ve learned that the autism community encompasses so many viewpoints and so much variation. There are members of the autism community that prefer to be called “Autistic,” and others that prefer “person with autism.” Different members of the autism community have different sensory sensitivities and accessibility needs. And, of course, members of the autism community have so many other identities as well, including racial and ethnic identities, gender identities—different personalities and talents, like anyone else. So, the most important thing I’ve learned is not to assume anything. Always ask what language a person prefers to use to describe themselves, as well as what they need to participate. Tell us about your Striving for Disability Equity series, including the challenges and successes. From the beginning of the Learning Together, Connecting Communities initiative, we knew we wanted to document and share everything we learned from it. At first, we thought we would write a boring old article and publish it in some academic journal. But then we thought, that probably isn’t going to reach our audience. We want our funded partners to read this. We want peer foundations to read this. We want the tone to be inviting and conversational, and we want people to feel like they can respond. So we published our Striving for Disability Equity series online instead. Striving for Disability Equity is a series of four blogs published on Medium, in which we talk about recognizing our bias as an organization; describe the Learning Together, Connecting Communities initiative; and discuss the next steps we are taking to confront our ableism. So far the four blogs have been read more than 1,250 times. That in itself is a success. We’ve also heard from peer organizations who have used the blogs to start thinking about and examining their own ableism. However, we’ve also had negative feedback. We’ve been criticized for reinforcing the power dynamic between able-bodied, ableminded funders and disability communities. We’ve been told our words don’t mean anything without action, which is true. It’s time for us to start acting. People with disabilities, including autism, represent the largest minority group in the United States. Many funders include race/ethnicity and geography in their equity priorities, but very few include disability, despite disability crossing all socioeconomic lines. Why do you think that is?

Photo by Brenna King

I don’t know if I’m the best person to answer this question, since I’ve only worked at a foundation that prioritizes disability, and I’ve never been a part of choosing an organization’s equity priorities. But, if I had to guess, I would say it has something to do with most people seeing disability as a medical condition rather than an identity. I think most people see disabilities as something to be prevented or cured. A lot of money ends up going to medical research or equipment. So, when funders dedicated to social justice start thinking about their priorities, disability communities may not even come to mind. Fortunately, we’re starting to see a change. In the last few months, local funder Meyer Memorial Trust and national funder Ford Foundation both publicly committed to including disability communities in their equity work. I’m sure there are others I haven’t heard about, and I expect more will follow. How is NWHF working with other funders to strengthen capacity in our region for disability-led organizations? We’re in the beginning stages of this. Our leadership at NWHF has had some conversations with other funders. I know we’ll be asking leaders from disability communities in the region to collaborate with us. Stay tuned for more! How do you think funders and the autism community can better work together? I think that this weight should fall largely on the shoulders of funders. Funders have underinvested in organizations representing people with disabilities (and other communities too), and we need to reach out, build relationships, educate ourselves about disability communities and put our money where our mouth is. The autism community should keep applying for grants, take advantage of information sessions and other in-person events to put yourselves in front of foundation staff, set up coffee and lunch dates with program officers, ask for the accommodations you need to participate. Funders need to honor those requests for accommodations. Is there anything else you’d like to share with our readers? Just that we owe a huge debt to our partners in disability communities. We thank you so much for being teachers, leaders and champions in this movement. To learn more about NWHF and the work we do, please visit www.nwhf. org. Laura Nash is Northwest Health Foundation’s Communications Coordinator. She identifies as having anxiety disorder and depression, and has thoroughly enjoyed the opportunity to learn from disability communities in Oregon and Southwest Washington through her work at NWHF. In her free time she reads, writes, paddles and enjoys the arts.

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lifespan ALL AGES AND ABILITIES

IN THIS SECTION Special Celebrations........................................................................................ 12 Stories from the Spectrum........................................................................... 14

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The Miracle League of Vancouver believes that everyone deserves a chance to play America’s great past-time: Baseball!

Play. Volunteer. Give.

Adaptive baseball program for kids and adults with any disability No age limit Everyone plays-bats-wins

Promoting positive interaction with our Buddy Program Serving Portland-Vancouver area

www.miracleleagueofvancouverwa.org info@mlvw.org • (360) 524-5423

Autism Empowerment Vehicle Donation Program

Occupational Therapy Specializing in Sensory Processing Disorders Auditory Interventions • DIR/Floortime • Handwriting Therapy Intensives • Interactive Metronome • Yoga Posture/Core Development • Qigong Sensory Massage Rhythmic Movement Training • Counseling Social Skills Training • Support Groups

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 Spectrums Magazine

AdvancedPediatricTherapies.com Portland & Vancouver locations: (360) 885.4684

Call toll-free at (866) 392-4483 Indicate donation is for Autism Empowerment OR go online: bit.ly/aevehicledonation www.DonateForCharity.com www.spectrumsmagazine.org

LIFESPAN

Special Celebrations

Everyone deserves to be celebrated! By Karen Krejcha Beautiful ideas often blossom from seeds of adversity. Feeling social isolation due to disability is a lonely place to be. Theresa Van Pelt knows what it is like to feel this heartache. “My beautiful son, Tristan experiences autism. As he was growing up, I started to notice that our friends and extended family had started to distance themselves from our family. They did not understand his autism or anything that came with it, so slowly they all started to fade away.” Despite Theresa and her husband, Jeremy positively advocating for Tristan to be included as he was growing up, things didn’t always work out as planned. One year at his birthday party, one of her worst fears as a mother happened and NO ONE who was invited came. Her son laid under their kitchen table crying, “Where are all the kids, mom?” After that heartbreaking experience, Theresa began searching for positive ways that her family could find support and friendships for her son. “We found groups like The Miracle League of Vancouver WA, TOPSoccer and Autism Empowerment and started signing Tristan up for any activities we could. As we started meeting other families in the special needs community, I would hear stories just like ours where friends and families didn’t understand. I would hear parents share being stared at when trying to go to community events because their child had a difficult time or unusual behavior. I would hear about other children who had never been invited to a peer’s birthday party. That was when I decided that I wanted to do something to make sure that this never happens to my son, or anyone else again, if I could possibly help it.” Theresa Van Pelt launched Special Celebrations in Vancouver, Washington in December 2015 as a grassroots group dedicated to supporting and celebrating individuals and families who identify with disabilities or special needs. Although activities are usually in Vancouver, their events and Facebook group include and welcome individuals and families from all around the Portland metro area. As they celebrated their one-year anniversary in December, Theresa reflected upon some of the free activities and events Special Celebrations has hosted within the last year.

Special Celebrations’ first event was called Santa’s Workshop, one they repeated on Dec. 3, 2016. Shares Theresa, “This event was created so that our celebrators would have the opportunity to come and pick a gift for someone they love. We all find joy in doing something nice for others, and that is no different from our children who experience special needs or different abilities. Here they can make an ornament, pick from a selection of small gifts and wrap it all to save for their family’s holiday traditions!” Theresa continues, “This year, we added an interactive Sensitive Santa to the event. He mingled with our celebrators rather than sitting for pictures. This was a big help for our kiddos of all ages who just don’t do well with waiting in lines for a long period of time.” Making events as sensory-friendly and inclusive as possible so that everyone feels welcome and has an opportunity to participate meaningfully is extremely important to Theresa. “I really loved our Bingo event. We had some celebrators visit us from group homes in our community and seeing the joy of being around other people and then each and every one of them winning a prize; it was absolutely beautiful! I still remember the smiles and joy this simple event and giving of our time brought to them!” Other events have included: a Valentine Carnival with specialty treats, an Easter Egg Hunt with sensory-friendly games and crafts and a visit from the Easter Bunny, a Mother’s Day Red Carpet Celebration, a Father’s Day Celebration, Summer Backyard Socials and a Talent Show. Often children and adults who are sensitive to loud noises are not able to enjoy 4th of July. A creative solution for this was the “No Boom 4th of July Celebration” with family fun, games, prizes, visits from Star Wars characters, treats and snacks and a NO BOOM safe zone. Special Celebrations’ most well-attended event was a free Harvest Festival in late October held at The Arc of Southwest Washington. There were indoor Trick-or-Treat tables, resources from community partners, games, crafts, costume prizes and a cake walk. Outside was a sensory break area, a bean bag toss and miniature golf. Shares Theresa, “My son LOVES to go trick-or-treating. As he has gotten older and taller, we started getting comments from people like ‘Aren’t you a little old to be out here?’ Continued on next page

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Celebrations, continued from page 12 While he never noticed this happening, it’s a hard thing for a parent to watch. He just wants to be out there having fun like all the other kids are and he doesn’t understand that teenagers start to do other things to have fun as they grow up. So the Harvest Festival was created to fill many needs.”

all want to help and get involved as much as they can, it’s often hard to keep asking the same people for help. The positive side of that is that our families DO want to help when and where they can, so we have been able to keep all our events running on parent power so far!”

Local mom, Laura Shook has a son on the autism spectrum who thrives at the celebratory gatherings. “My son absolutely loves the fun events. He socially struggles really bad. At Special Celebrations events, he has a sense of belonging and that is huge for him. We are thankful for all they do!”

That parent power also provides joy to volunteers. When local mom and volunteer Miriah Sachs was asked what she liked about being a part of Special Celebrations, she shared, “They are helping me give back as so many others have given to me… And this allows me to build my village around my little family when before we were alone.”

Special Celebrations eventually has a goal of becoming a nonprofit organization. Currently, they partner with a variety of other nonprofits and groups of parents within the local disability community. Theresa explained, “We have brought our crafts and activities to several other groups including Autism Empowerment, Amazing Moms, Club Upside and Special Education Parent Teacher Student Association of SW WA. We have been blessed by Autism Empowerment and Amazing Moms by them being two of our biggest supporters. Both have given several donations to our events.”

To better support celebrating families, Theresa explains, “We ask our families a lot of questions and ask what kind of support they need to be successful at our events. We break larger events up into several different rooms when available. We also create social stories for our events to help prepare our guests for what to expect. My goal is to become a nonprofit organization, to reach more families and ultimately, employ our valuable members in our community who experience special needs.”

Photo courtesy of Theresa Van Pelt

As Special Celebrations continues to grow and their events attract more people, donations of volunteer time, supplies and money will become more important. When asked about their biggest challenge, Theresa replied, “I would have to say being able to find the funding and support for each event. Because we are not yet an official nonprofit, we are not able to as easily seek donations within our community, so we rely on the support of our family, friends and group members. When we started, I had a running start with a craft room full of supplies. As that has been used, I often use my own money to supply events and work very hard to find and gather donations from other groups and families that support us. While I know our families

In addition to community events, Special Celebrations has a free birthday card program where celebrators who sign up get a free card in the mail each year. They also offer private parties for birthdays or other special occasions. Special Celebrations is currently planning their 2017 calendar and are bringing back several events and creating a few new ones. When asked about expanding to other areas, Theresa shared, “We would absolutely love to become a model for others to start groups like ours in other areas. Volunteers and new celebrators are always welcome. Everyone deserves the chance to be celebrated!”

Want to party with us? How to connect with Special Celebrations: Email: specialcelebrations@outlook.com Facebook: www.facebook.com/groups/ specialcelebrations/ Phone/Text: (360) 433-1235

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LIFESPAN

Advocating for community inclusion Personal experience sparks passionate advocacy

STORIES from the SPECTRUM Autism from an Autistic perspective

By Ivanova Smith My passion is for the inclusion of people with intellectual/ developmental disabilities (I/DD). For a long time, I was isolated from my community. I was not included during the first five-and-a-half years of my life. I was born in Latvia, a country that was suffering under Soviet occupation. I was born premature and unwanted. These realities around my birth and orphanhood have had a great impact on my passion! I feel we all should be wanted. We should all be included in the community! During the time when I was raised in an institutional orphanage, I did not know what family meant. I did not understand the concept of private property. I remember looking forward to just going outside in the orphanage. I remember been happy to see pieces of colorful glass on the ground. I had no friends there. I remember always being alone. I remember not getting much to eat but watery vegetable soup. I could not communicate verbally. I remember just making noises. I remember the day that all changed, the day I was included in a family! I was adopted and become part of the Anderson family. I remember being scared at first of this new world that was ahead of me. But over time, I started to love it. When my family kept feeding me and not denying me food, I was so happy to get to eat!

education, it was very confusing. I heard of how people like me were put in institutions. I heard justifications for that which made me scared of ever having to return to an institutional environment. It happens here in the USA. We live in a world that says it is okay to put people with intellectual/developmental disabilities in institutions. This is not justice; this is segregation. When I started my journey as a disabilityrights advocate, it was after I overcame a lot of challenges. I testified to legislators of Washington State for the first time in 2015. It was during my first Advocacy Day. (Advocacy Days are held during each legislative session to involve self-advocates and families in the legislative process, giving them opportunities to make their voices heard by legislators and to have an impact on policy and budget legislation that affects the services and supports available to them.) Continued on next page

I was so happy to be free. I want that for all people with intellectual/developmental disabilities. I know that as an autistic person, I was at risk of being put in a mental institution if my family had not been able to adopt me. It happens not just in other countries. I moved to Washington State in 1994 where people with I/DD were just starting to be included in their communities. I was happy to be brought to the USA and be raised in a Christian home! But the United States was not perfect. During school it was hard. Lots of people did not understand me. Lots of people I did relate with were segregated from other students. As a kid in special

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Photo by Fraley Photography

My family now loves telling the story of how much I would eat after we left the orphanage, and how I had breakfast and only stopped to have lunch.

Inclusion, continued from page 14 When I heard about what Washingtonians who live in four different institutions had to deal with, it made me want to advocate more. When I heard how people with I/DD are not being given an equal education, it pushed me to advocate more. When I was told it was okay for people with developmental disabilities to be paid below minimum wage, I knew that people like me were not being treated equally in the workforce. Segregation is what hurts us. It why I work with self-advocacy organizations like Self Advocates in Leadership (SAIL), People First of Washington and Allies in Advocacy. Members in each of these groups each have a passion to advocate for rights of people with disabilities. I also love living in the community! My family worked hard to make sure I was included! My mother was determined for me to go to college and eventually to a university. She believed in me when I did not even believe in myself. I want to help families see the abilities in their I/DD children. I want our youth to not feel ashamed for having a disability. I want people with I/DD to feel comfortable advocating for support. I have been given many opportunities, thanks to networking skills I learned through Central Washington University and Arc of King County. I am honored to work as a Faculty Mentor for the University of Washington’s Leadership Education in Neurodevelopmental and Related Disabilities (UW LEND) Advocacy program. I hope my work helps to bring more people with I/DD into positions of leadership. Our work is valuable and I want that to show. When I get on the stage to give a speech, I put all my passion into it. I want people who watch me to know that people like me are human just like they are. People with intellectual and developmental disabilities are equal in the eyes of God. We should not be institutionalized! We should not be segregated. I love public speaking. It has been a gift that I cherish. I hope my voice can help people see the value and skill people with I/DD disabilities bring. Being Autistic, I am proud and happy to get to live in a

country where I can speak freely about the issues that matter most to me. I realize in this time more than ever, we need to advocate more. Lots of changes are going to happen in our country and I want make sure my people are included and not forgotten about. Because of my passion and advocacy experience, I was invited to speak on Oct. 25, 2016 at the Legislative Candidates Forum on Disabilities in Clark County, Washington. This was a great honor. I was so happy to see so many people, including advocates and legislative candidates, wanting true inclusion for all people with I/ DD. The evening showed me how allies and DD advocates can work together on these issues and make the world a more inclusive place. It reminded me that I was not the only one fighting for this! Even the legislative candidates heard the policies I was advocating for in my speech. My hosts were truly kind to invite me to show what selfadvocates really need from their government! I support policies that help people like me live a full meaningful life in the community! I support policies that allow all I/DD people to be included in meaningful integrated employment. Big companies like Microsoft have already seen the potential of autistic programmers! We need more businesses to follow suit. So many people’s talents are ignored because of their disabilities. There are so many media stories talking about how bad it is to be developmentally disabled. It makes me think that our youth don’t see their value… I am excited to enter this legislative session with the goal that more people are included! I am here to change minds about what my community is! We are not burdens! We are epic people that seek to be included and that is what I fight for.

Regional Advocacy Opportunities: Advocacy Days trip to Olympia, WA: Clark County Parent Coalition, (360) 823-2247 Disability Advocacy Group (SW WA/Portland Metro): www.facebook.com/groups/disabilityadvocacygroup/ Oregon Self Advocacy Coalition: askosac.org Self-Advocates in Leadership (SAIL), WA: www.sailcoalition.org Southwest Washington Disability Alliance (SWWADA): www.facebook.com/southwestwashingtondisabilityalliance Oregon Intellectual/Developmental Disabilities Coalition: www.oregoniddcoalition.org

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IN THIS SECTION A Literary Hero for All Abilities..................................................18 Martial Arts and Autism.................................................................. 20

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Photo courtesy of Tara Oâ&#x20AC;&#x2122;Gorman

INCLUSIVE WAYS TO HAVE FUN

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A Literary hero for all abilities An interview with Brian Tashima

By Karen Krejcha

Readers who stay current on books featuring fictional characters on the autism spectrum may already be familiar with Brian Tashima’s The Spectraland Saga, a science fiction/fantasy book series about a teenage boy on the autism spectrum who travels to a world where music is magic and autism is a superpower. But what they may not know and what we hope for all readers to discover is just how important it is to Brian that his series aligns with positive goals within the autism community. Spectrums caught up with the Vancouver, WA based author and award-winning musician for an exclusive interview to talk about that topic and more.

with each book in the series, which makes them fun to write.

How many of the characters in your book series identify on the autism spectrum?

What are the challenges in creating autistic characters that readers on/off the spectrum will relate to and feel are authentic?

BT: Explicitly three: the protagonist Joel Suzuki, his co-star Felicity Smith, and Marshall Byle, their rock star idol. Describe their personalities. BT: Joel is sensitive and soft-spoken, although he starts to come out of his shell a bit more as the series progresses. Felicity is feisty, a little abrasive at times, and uses sarcasm as sort of a defense mechanism. Marshall is what you might expect from a successful rock star: charming, charismatic, but also full of himself. All three of them change and grow

You have good guys and bad guys on the spectrum in your book. Is this intentional and why? BT: It is intentional. The message I wanted to get across was that being on the spectrum shouldn’t pigeonhole you one way or another—you can be good, bad, or somewhere in between, just like anyone else in the population as a whole. Whether you’re on the spectrum or not, we are all, simply, people.

BT: My biggest challenge is that I’m not on the spectrum myself. But my son Torin, who is on the spectrum and was the initial inspiration for this series, serves as kind of the model upon which Joel is based. Also, Autism Empowerment’s Karen Krejcha, who is on the spectrum as well, has been gracious enough to review drafts of each book before they’re published and provide her feedback. It’s very important to me that my characters are realistic portrayals of people on the spectrum, so I’m really grateful for Torin and Karen’s input and support. Continued on next page

Photo courtesy of Brian Tashima

Brian Tashima’s son, Torin (pictured left) was the inspiration for his series of books. The books are a family affair—Tashima’s daughter, Melody, provided the artwork (pictured center).

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Hero, continued from page 18 Who are the books geared toward? BT: The series is aimed at a young adult audience, around 12-18 in age. But I think anyone who’s a fan of science fiction and fantasy in general—like me, for example—would also enjoy it. How have your books been received by the autism community? BT: The response has been nothing but positive so far, so I’m very happy about that. I think the most gratifying moments have been when I receive letters from kids on the spectrum saying things like “Thank you for writing this, it’s made me feel so much better about myself.” How have the books been received by the Young Adult/ Sci-Fi/Fantasy community at large? BT: Quite well, actually, which is cool because readers of this genre can be pretty critical and demanding at times—I should know, being one of them myself. The reviews of the books that are out so far have contained a handful of constructive criticisms, but the rest of the feedback has been overwhelmingly positive. What are your goals for the series (in relation to promoting autism acceptance or advocacy)? BT: My main goals are one, to provide kids on the spectrum with an inspiring literary hero of their own that they can relate to and gain a sense of coolness and empowerment from—someone who saves the day with his special qualities, not despite them. And two, to give readers in general a fun adventure story that, if they don’t already know anything about autism, provides them with a level of insight and awareness. As I like to say, I’m not trying to minimize the challenges of being on the spectrum, I’m trying to emphasize the positives. Tell us why and how you chose an actor on the autism spectrum to do the voiceover work for your audiobook? BT: When I did the audio version of the first book in the series, I really wanted to find a voice actor who was on the spectrum, not only to provide a level of authenticity to the work but also to show people what kind of amazing talent there is out there in the autism community. So I was fortunate enough to meet Jonathan Murphy, who had already done a lot of cool work including being the narrator for a lot of rides at the Great America theme park in California. He did a fantastic job with the audiobook, and I couldn’t be happier with the results. One of your goals is for the series to become a movie franchise. Tell us about this. BT: A lot of people have told me that the books are very visual and that they would love to see them adapted to the big screen. And I tell them, me too! I think it would be a great way to expand the audience and spread the message, if you will. I saw The Accountant, the Ben Affleck-starring movie with the main character on the spectrum, and while I enjoyed it for the most part, it made me think that there

really is a need for a positive, kid-friendly film with an autistic protagonist. Why is it important to you that autistic actors be cast in some of the leading roles and autistic advisors be involved in the production? BT: Just like with the books and the audiobook, it’s really important to me that the characters be the most genuine and respectful portrayals that they can possibly be. And, of course, I’d like to give people in the autism community the opportunity to show off their skills and break into an industry in which people with disabilities in general have been sorely underrepresented. It would be really cool if Dan Aykroyd and Daryl Hannah, both of whom are on the spectrum, would play roles in the film versions of my books. They’re not quite the right fit for Joel and Felicity, of course, but we’d find roles for them for sure! Does a reader need to read your books in order? BT: Each of the books is a story in itself, but the series as a whole does form one continual arc, so it would be much more enjoyable to read them in order. It’s more like Harry Potter than James Bond in that respect. Tell us about your upcoming book in the series. BT: The third book, Legend of the Loudstone, is tentatively scheduled to be released in either March or April of 2017. Without giving away too much, it expands the Spectraland universe pretty significantly as Joel and company travel to a new and exciting location where they meet a completely different race of beings. I had a lot of fun writing it. How can readers buy your books? BT: They can find and buy them online at my website, www.thespectralandsaga.com, which contains links to my Amazon pages as well as sample chapters. They can also get them at Kazoodles toy store in Vancouver, or at one of my periodic public appearances in the area that I announce on my blog (briantashima.blogspot.com).

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Martial Arts

Autism

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Photos by John Krejcha

Many benefits to those on the spectrum

By John Krejcha On any given day or evening in the Portland metro area, one can find youth and adults of all ages and abilities participating in some form of martial arts. While there are several hundred types of martial arts around the world, the most common are Taekwondo, Karate, Aikido, Tai Chi, Kung Fu, Judo and Brazilian Jiu-Jitsu. Martial arts participation of those ages six and older in the United States has grown from approximately 2.1 million people training in 2011 to over 3.9 million in 2015. This trend spike includes an increasing number of youth and adults in the autism community. Martial arts can assist youth and adults on the autism spectrum in a variety of ways, including physically, emotionally and socially. A few common benefits reported by families include improved balance and coordination, increased focus and attention to detail, better self-esteem and a method for self-regulation. A 2010 research project conducted by the University of Wisconsin physical therapy department also confirmed what many parents were already reporting — in the course of learning martial arts, children on the autism spectrum grew more socially assertive and cooperative and essentially came out of their shells. In August of 2016, The Journal of Exercise Rehabilitation published a study authored by Yumi Kim from the Department of Kinesiology at California State University, Northridge. The purpose of the study was to investigate the effects of an 8-week Taekwondo intervention on balance in children with autism spectrum disorder (ASD) compared to children not receiving the intervention. Their findings suggested that TKD can be a fun, feasible, and effective therapeutic option for balance improvement of children with ASD.

that would be good for him,” shares AJ’s mother, Tara O’Gorman. She continues, “He graduated out of physical therapy and occupational therapy within months of starting Taekwondo. He learned about self-control, selfrespect, respect for others and how to protect himself.” “AJ and his brother along with myself took Taekwondo, and we all benefited from the physical activity and the mental challenge involved in achieving black belt. AJ, who eventually earned a 2nd-degree black belt grew from a physically and emotionally awkward and timid little boy to a strong, confident young man.” Zachary Borghello, a 13-year-old with ASD from Salmon Creek is also no longer in occupational therapy. He joined East West Martial Arts in 2013 where they teach a different form of martial arts each quarter. He now wants to be a martial arts teacher when he grows up. Shares his mom, Julie Borghello, “Zachary had been having occupational therapy for many years, and we were starting to look at where he possibly could get similar benefits but in a more inclusive setting with his peers. We had heard from a few friends who also have children with ASD that martial arts was great for their kids, so we figured it was worth a try.” “It makes me feel great, it makes me feel strong and energetic,” exclaims Zachary. He continues, “They teach you things like positive attitude, perseverance and excellence. Class is fun and hard, the teachers really help you to improve.” Ken Gering teaches at East West Martial Arts in Vancouver and has been working with Zachary from the start.

AJ O’Gorman, a 14-year-old Asperger’s teen from Vancouver, became involved with martial arts when he was seven years old, after joining an after-school program at his elementary school. His experience helped him feel calmer and less stressed.

“Zachary has grown in so many ways over the past few years. At the start, Zachary was hard to hear and now he is clear and understandable with wonderful voice control. Also, his core was very weak and now he can do handstands and assisted controlled flips. He really wants to learn the standing back flip. We are not setting any limits on him; we are taking it one step at a time.”

“I like the physical activity of Taekwondo. I like the forms. It is repetitive and consistent. Even though there is a stigma about martial arts being violent, it is the opposite. It teaches you valuable lessons like restraint, respect and responsibility.”

Julie has noticed additional advantages which have helped Zachary at home and school, including improved concentration.

One of the hallmarks of all the different martial arts is the repetition. “After seeing the benefits of just a few weeks in an after-school program, we knew we’d finally found something involving physical activity and fun

“There have been many benefits, some that aren’t part of the instruction and many that are. He has learned focus, discipline and the importance of practicing outside of class. They also talk in class periodically about being respectful, the importance of random acts of kindness, Continued on next page

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RECREATION Martial arts, continued from page 21 nutrition and other topics related to how he should act outside of class. It has also helped him deal with noise which was a challenge at first, but now it doesn’t bother him at all and he’s become less bothered about noise in general.” Local families have also reported increased self-advocacy when dealing with bullying behavior by others.

developed by the grandsons of the inventor of Brazilian Jiu-Jitsu.” Mike continues, “What impressed me most about the program was it is truly a gentle art. Essentially, it is a thorough series of private lessons teaching every exact concept and detail of how to deal with a bully, from the initial teasing all the way to what to say if you end up in the principal’s office because things got physical. While it is rooted in martial arts, it does not involve hurting the bully. Sophie, like many on the spectrum, has zero interest in harming another human being. Brazilian JiuJitsu has been a good fit for us because it does not involve hitting or striking. It is all about strategies to stop the bully with verbal Jiu-Jitsu, talking to adults, and should these strategies fail, giving our kids the tools and the confidence to protect themselves, control the bully and negotiate.” When asked how she feels when she does martial arts, Sophie said, “Tough – and like I’m learning to defend myself like a pro.” She feels empowered because of her training when confronted by bullying behavior. “When a bully comes up to you, they have no idea that you’re ready for them.” The confidence that Sophie is showing is not going unnoticed. Mike shares, “She has the knowledge and skills to deal with bullies appropriately and effectively. She is more confident and outgoing. School staff have commented on the increased confidence they see in her now, and we have not mentioned her Jiu-Jitsu.” When asked to share what they would tell those considering martial arts for youth or adults on the autism spectrum, youth and parents cautioned that martial arts might not be a fit for everybody and to do your research beforehand on the different kinds of options out there.

Some martial arts, like a form of the inventors of Brazillian Jiu-Jitsu called Gracie, involve no hitting or striking. Sophie is a 13-year-old Portland teenager who started learning Gracie Jiu-Jitsu in the past year. Her father, Mike McLaughlin shares, “Sophie, like many kids on the spectrum, has been a target for bullies in the past, and as great as her school staff is, they simply can’t be everywhere all the time. I started looking at many options some time ago and have narrowed it down to what I believe provides an incredibly powerful solution that I can fully get behind, and that Sophie can both enjoy and reap huge benefits from. I found a program called Gracie Bully Proof that was

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Tara O’Gorman shares, “Just because one martial art or style does not work for a child, doesn’t mean something else won’t. Some kids like AJ thrive in the formal, rigid instruction he received from his instructors who taught in a traditional Korean style. Other kids enjoy a more fun, relaxed atmosphere that focuses on physical activity. Like anything, it’s all about finding the right fit for your child.” Adds Julie Borghello, “As for martial arts in general, I would tell families that if they are looking for a sports activity for someone who would struggle with a team sport, then martial arts is a good option. They get the fitness, discipline, social interaction, and group experience as an individual participating without having to deal with game strategy.” Mike McLaughlin encourages to choose wisely. “While any martial art can be beneficial, you should do your homework before you invest your time and money. Look for the program that will be most effective in meeting your goals.”

Can research really change the future of autism? You can SPARK research with one click.

Join SPARK – a free study with a simple mission: speed up research and advance understanding of autism. Individuals with autism will receive gift cards valued at up to a total of $50 for participation. To learn more about SPARK and register online, visit www.SPARKforAutism.org/OHSU

503-974-6478 | SPARK@ohsu.edu SPARK: Simons Foundation Powering Autism Research for Knowledge

SPARK Primary Investigator: Wendy Chung, MD, PhD • Protocol Number: 20151664 • Western Institutional Review Board

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IT’S NOT THE DESTINATION, IT’S THE JOURNEY: Help for lessening the bumps in the road of holiday travel By Melinda M. Thompson It’s that time of year again: time to think about hitting the road or the “not-so-friendly skies” to visit family and friends for the holidays. Perhaps this year, your family is planning the “perfect holiday family escape” to a sunnier climate for a little rest and relaxation? Sounds great in theory, but even a trip to a crowded mall of shoppers can be complete sensory overload to someone on the autism spectrum. How do families find that balance, replicate important routines and take the trip to see relatives—all while making sure your child has the required down time and understanding they need? Traveling during the holiday season can be stressful. However, proper planning, research and consideration of how a child or family member does best when they are outside their routine and comfort zone can ease the process. Knowing their needs and preparing for a reaction to possible over-stimulation or what might cause a potential melt-down can really make all the difference when planning a seasonal trip. Let’s face it: a busy airport on Dec. 23 is going to bring some challenges. Knowing the questions to ask, the staff to talk to and arrangements that can be made before a trip is key when planning a trip with special needs travelers. With checklists, tips and contact information, we have got you covered and on your way! PLANNING Decide on your method of transportation. Will you travel by car or public transportation, like a train or bus? Will

you need to fly, and if so, how will that trip through the Transportation Security Administration (TSA) screening look for your child? Will you be traveling during peak traffic times or busy travel days? Perhaps it’s possible to leave a day or two earlier to avoid a little chaos. What will your child need to occupy him or herself? Sometimes choosing an airline like JetBlue with individual TVs on every seat is just the ticket to keeping a child happy and focused! Get kids involved in the planning and preparation. Have your traveler pack his own backpack, and fill it with things that will be exciting to open once on the road. Let her choose a new coloring book and crayons or a new book or magazine. Give your child on the spectrum a sense of control by packing items that provide comfort such as video games, headphones, cards, gum, snacks and a personal travel blanket and pillow. Pack chargers and extra batteries to ensure electronics are ready to go! ACCOMMODATIONS Family friendly hotels are everywhere these days. Many include breakfast and wheelchair-accessible rooms, and are more than willing to accommodate a special need or dietary request. Sensory diets can be kept in place while traveling by choosing hotels with indoor pools or hot tubs. Plan where you will stay ahead of time. Sometimes calling and requesting an early check-in time is an easy fix and can avoid a long wait in a lobby. If you are staying with family, be sure to have a thorough conversation with your hosts to ensure they have a clear understanding of your child’s limitations, needs and accommodations that will make it a happier stay for everyone. It is okay to ask them to talk to their children or other invited quests beforehand. Sometimes a simple explanation of what autism is or why someone is in a wheelchair is all a family member needs. Knowing how it affects a family member creates better compassion and understanding for everyone. Don’t forget to include downtime or outings to take a break from family and crowds that help everyone recharge.

continued on next page

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Travel, continued from page 24 TRAVELING BY PLANE The Internet is a wealth of information for preparing to travel by plane. From social stories, books, videos and the new program TSA Cares, a lot of support and assistance have been implemented for travelers with special needs. TSA Cares’ purpose is to avert potential difficulties involving security screening of travelers with disabilities. You can print out a special “Notification Card” to give screeners as a “heads up” in a discreet way allowing parents to communicate the special needs without alarming or worrying your child. The website includes information categorized under the extra assistance needed: Autism or Intellectual Disabilities, Passengers Who Have Difficulty Being Touched, Waiting in Line and Disabilities and Medical Conditions, as well as information for Children with Disabilities. Review the specific information and inform the TSA officer how to approach and screen your child. Children with disabilities CAN be screened without being separated from their parents or guardians. You can even request a passenger support specialist ahead of time by calling a toll-free TSA Cares hotline. This special helpline number is “designed to assist travelers with disabilities and medical conditions, prior to getting to the airport,” according to the TSA website. Travelers may call TSA Cares toll-free at 1-855-787-2227 prior to traveling with questions about screening policies, procedures and what to expect at the security checkpoint. TRAVELING BY CAR Going by car can provide more flexibility and allows you to travel at your own pace, create a schedule that works for your family and make stops as needed. However, it can be long, boring and tiring for kids who are not use to riding for long periods of time. Being prepared with the pre-packed backpacks—games, phone apps, snacks—will help keep passengers busy. If you can take an extra day or two, talk to your travel companions about a special stop or sight-seeing destination along the route. Feed their interests with a stop at a landmark, park or museum that will tap into a specific source of excitement. Check with local tourism or chamber offices for local insight to make memories along the way. Traveling to another state? Give passengers a map to follow along or use a smart phone with roadside maps and attractions. For some families, driving at night when children are

sleeping can help alleviate some of the “Are we there yet?” questions from the backseat. Looking at a route to take into account any construction or road closures is a good pre-planning tip as well. TRAVELING BY TRAIN Before traveling by train, call ahead to ensure that your designated stops have wheelchair mobility or accessibility. Information, accessible seating and bedroom space can be secured in advance, and more details are available on the Accessible Travel of www. amtrak.com. Amtrak offers a discounted 15 percent rail fare discount to passengers with a disability and up to one traveling companion. You must provide written documentation of your disability at the ticket counter and when boarding the train. Another resourceful page is the Amtrak Kids Depot online, a fun informational webpage filled with games, stories, activities and links. Get kids excited about trains or buses by sharing history and social stories beforehand. Trains make many stops, and packing small “activity bags” can be helpful to keep a child entertained at each station. Also talking about the various stops, landmarks or cities through which you are traveling can create a nice dialogue along the way. THEME PARK TRAVEL Visiting a theme park can be a once-in-a-lifetime experience if it is a good fit for your family. The sensory overload is magnified through lights, sounds, sound effects and larger-than-life characters around every corner. Pre-planning and knowing your traveler’s triggers and interests are essential. The holidays are the busiest time of the year, so lines are longer and the parks are packed. Look at park maps ahead of time, and ask where good quiet spots and spaces away from crowds might be possible to recharge. Disney theme parks have been in the news lately for the changes to their accessibility policies for those with disabilities. The Disability Access Service Card (DAS) is designed to accommodate guests who are not able to wait in a conventional line environment due to a disability (including non-apparent disabilities). Read and research, call Guest Services and ask specific questions to ensure you are very clear about how the continued on page 29 www.spectrumsmagazine.org

Dear Spectrums Readers, Congratulations! This is our largest issue ever with many milestones:

48 pages 10,000 copies 360 distribution points 25,000 readers and Oregon 7 Washington counties We see this as an autism community win! That being said, of all the pieces written for the Winter 2016 issue, this was the most difficult for me to write. Ideally, it should have been the easiest.

As an autistic woman parenting two sons on the autism spectrum, I see the world differently than a lot of people do. Because the way I focus my attention is different, I am often able to notice patterns and concepts that others miss out on. I see big pictures and butterfly effects and find that to be a true gift. However, because I’m not always attuned to others and because I am often intensely in thought, I tend to miss out on social cues and hidden societal rules that other people find as obvious.

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When I approached my husband, John in 2011 and shared that I had a calling from God to make positive change in the world through a proactive and uplifting autism organization, he supported the vision without hesitation. Autism Empowerment’s four foundational pillars which we use to build all of our programming on are Accept, Enrich, Inspire and Empower. Together, with many other devoted volunteers in the autism community, we work daily to help, encourage and empower others to let their light shine and to contribute to building a positive community culture where autistics, allies and families can thrive. This is not about me, my husband or our volunteers. This is a movement on behalf of the Autism Empowerment community. It’s not a little us. It’s a BIG US that includes ALL OF US. We are not in competition with other autism organizations. We are here to support and collaborate and build each other stronger, so that our world may benefit through increased opportunity, reduced ableism and the belief that all of us have strengths and gifts to positively contribute to the society we live in. Sometimes I am able to articulate this. Other times I need support. Today I need your support and your help. This letter was supposed to be an inspiring annual appeal to ask for your financial help for Spectrums Magazine and Autism Empowerment. As an organization, we need to

raise $150,000 to keep Spectrums Magazine going and growing in 2017. That’s before we pay people and it’s critically important to us that the autistic adults and other members of the autism community that are working on this publication and our other nonprofit programs earn a fair living. For analytical people out there, we have lots of great statistics to share. For our visual visionaries, we have beautiful impactful photos. For our bottom-line drivers, continued on next page

Readers, continued from page 26 we have a pretty impressive list of accomplishments. But will any of that encourage people to give? This letter was meant to be unique and encouraging and respectful of the diverse community we live in, where people of all faiths, races, ethnicities, income and ability levels are valued. I wanted everyone reading this to know that Autism Empowerment and Spectrums Magazine appreciates you and looks forward daily toward contributing toward our vision of an inclusive society that values, respects and embraces all people. How do I put that all together? How do I inspire and encourage YOU, the one reading this sentence right now to give? The truth is, I just don’t know. So I’ll ask you sincerely to write and tell me what inspires you to give.

You may have noticed that in this particular issue, for the first time ever, there is a white donation appeal envelope. It is our hope that if you have found value in Spectrums Magazine that you will reward that with a financial end-of-the-year (or anytime-of-the-year) donation.

As someone who has felt alien in my own world the majority of my life, it would never be my intention to do that. So I wrote and rewrote and wrote again some more and this is what I came up with. Autism Empowerment needs the financial support of people like you in order to continue to innovate and bring you quality programs like Spectrums Magazine. Would you please find that envelope in the magazine or visit www.autismempowerment.org/donate and make a generous tax-deductible gift today? The autism community thanks you. I thank you. From my heart to yours,

Karen Krejcha Executive Director and Co-Founder, Autism Empowerment Editor, Spectrums Magazine

It is our desire that if you see the value and potential in the work that Autism Empowerment does to promote a culture of acceptance and empowerment in the autism community, that you will join in and embrace that work with a monetary gift. I initially thought of writing a “Dear Sensitive Santa” letter with a list of all the reasons we’ve been nice and wish list that Santa’s elves (our readers) could fill, but a dear and respected friend cautioned me that I may alienate some communities. www.spectrumsmagazine.org

education KNOWLEDGE TO EMPOWER FAMILIES AND INDIVIDUALS

IN THIS SECTION From Surviving to Thriving........................................................... 30 Educational Toy Guide....................................................................... 32

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Travel, continued from page 25

Creating memories from a family trip and spending the holidays

R U O Y E V Y R A E D RES AD TO

together in transit is an experience one will never forget. Luckily, traveling with children and family members who have special needs has become much easier.

new passes work. There is no longer easy â&#x20AC;&#x153;fast accessâ&#x20AC;? to attractions. Guests with disabilities using special passes must have their photo taken, be with their group and go to assigned kiosk stations around the park to obtain a specific pass for a specific attraction. They will be given a reserved time to come back. Creating memories from a family trip and spending the holidays together in transit is an experience one will never forget. Luckily, traveling with children and family members who have special needs has become much easier. There are ADA accommodations almost everywhere you go, and with the proper planning, you and your family can experience a magical holiday!

Spectrums Magazine is uniquely positioned to bring your business to individuals and families in the autism community. Book your ad today to directly reach this niche audience. For ad inquiries, email spectrums@autismempowerment.org or call (360) 852-8369

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Melinda Thompson is a mother of two teenagers and is a freelance travel writer. With a degree in Speech Communications, she has worked as a Parent Information and Training Specialist for PAVE and wrote a parenting column for eight years in Portland Family Magazine. Melindaâ&#x20AC;&#x2122;s stories have been featured in the Oregonian, the Columbian and numerous other local publications. She can be reached at: mommission@comcast.net.

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EDUCATION

Thriving in the Classroom Local advocate pens book

By Karen Krejcha Jonathan Chase is well-known and respected in the Portland metro area for being an advocate, educational consultant and mentor to youth and young adults on the autism spectrum. A bit of a Renaissance man, Jonathan is a man of many talents, including music, magic and motivational speaking. He spent many years traveling the country as a professional musician and his 2014 TEDx Salem talk, “Music as a window into the Autistic mind” has had over 200,000 views on YouTube. Diagnosed with Asperger Syndrome at the age of 14, Jonathan has worked in the autism field since 2008, partnering with agencies, nonprofits and families to spread a message of understanding and awareness. Earlier this year, Jonathan ran a successful Kickstarter campaign to publish a book he wrote geared toward teachers in general education classrooms but also of benefit to parents. Hot off the press, Surviving to Thriving: Classroom Accommodations for Students on the Autism Spectrum is now available for online purchase. Spectrums Magazine recently connected with Jonathan to get all the important details. What is From Surviving to Thriving? JC: Surviving to Thriving is a book for teachers who want to better understand and support students on the autism spectrum in the classroom. It covers both big-picture concepts like social and sensory processing as well as very specific accommodations, such as supporting students transitioning from class to class, or ways to help students who struggle to turn in their homework. What inspired you to write about this topic? JC: I do quite a bit of work as a public speaker and I regularly speak to educators at conferences and university classrooms. I kept hearing the same questions each time, and when I looked for resources to answer them, I found a real gap in published material directed to general education teachers. There is a lot of material for parents, and big dense tomes for specialists, but very few resources for everyday teachers who

want practical tools they can put to use right away. How is the book organized? (Should you read it coverto-cover or can you pick and choose which chapters to read? What is the style?) JC: The opening chapters show the teacher how the classroom looks through the student’s eyes, detailing differences in processing and common challenges for students on the autism spectrum. The second portion of the book is broken into specific accommodations. Each chapter addresses a different topic, from group projects to meltdowns. I use examples from my own experience to show why these accommodations are important and how the student may view them, and then detail methods to implement supports and ways to adjust the support to match the individual student. The book can be read through cover-to-cover or you can jump right into the specific area you working to address. Each chapter also has a synopsis for quick reference which is especially handy right before an Individualized Education Program (IEP) meeting. Regarding classroom accommodations for students on the autism spectrum: • What age student are the accommodations geared toward? • What kind of teacher is the book written for? JC: My book is written to support students of any age; the examples range from early elementary through high school but can easily be adapted to college settings as well. My goal is to reach regular everyday teachers who want to support students on the spectrum who are mainstreamed but need some additional supports to really thrive in the classroom. There is a whole generation of capable young people who just need a few supports in the right areas to make the classroom work for them. I also recognize that we ask a lot of our teachers. I set out to write a book that would make things easier not just for the students, but for the teachers as well. My Continued on next page

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Thriving, continued from page 30 systems are designed to be sustainable, easy to implement, and never single out students with special needs unless absolutely necessary. Many of the accommodations are “environmental” changes the teacher can implement every day, for every student, so they don’t have to change the way they do things when someone like me joins their class. The systems are targeted at areas of need common to students on the spectrum but every student can benefit from clear instructions or detailed schedules. What are common areas of need for students on the spectrum? JC: Obviously every individual has unique needs, but in general I see many students who need support with sensory and social processing, clearly-defined expectations, and systems that they can count on to remain consistent and reliable. I also believe that many of our current systems remove the student’s agency in the name of support. My accommodations are designed to promote self-advocacy and to empower the student through shared responsibility and respect. Sometimes it’s not what you do, but how you ask the question that makes the biggest difference. How would you define an inclusive classroom and why do you think that is important? JC: An inclusive classroom supports all students and gives every one of them an equal opportunity to grow and learn. Ideally, it’s designed to support the teacher as well, allowing them to teach and support the students without having to single out those who need a little extra help. An inclusive classroom also respects all students regardless of their label or diagnosis. It’s important because there are so many young people struggling in school for reasons that have nothing to do with their intellect or potential. We don’t need to segregate them from their peers or deny them the same experience as everyone else, we just need to make the classroom environment work a little better for them, and to ensure that teachers understand how students on the spectrum perceive things different from their peers. Although your book is directed toward teachers, what benefit would parents have in reading it too? (Are there accommodation suggestions that can be included in an IEP?) JC: While the book is directed at teachers I think it would be very helpful

for parents who want to understand their children better or make recommendations at IEP meetings. Most of the accommodations from the book could be written directly into an IEP, and even if the specific tool doesn’t fit, I think there’s a great benefit in understanding the student’s perspective and seeing examples of how some students see things differently. Tell our readers a little about yourself and your relationship with the autism community. JC: I was diagnosed with Asperger’s Syndrome at the age of 14, as a freshman in high school. I struggled mightily as a child, and school was an absolute nightmare. I dropped out at the age of 16 to pursue a career in the music business. Today I run my own business as a consultant and mentor to teens and young adults on the spectrum. I run social groups, offer one-on-one mentoring services, and regularly consult with both parents and professionals. I work as a public speaker and travel the country sharing stories of overcoming adversity, my journey to independence, and helping others understand what autism looks like from the inside. Whether it’s a group of parents, teachers, or other professionals I always try to bring them inside with a mix of humor and a positive message to leave them feeling good about the future and the promise we see in young people on the spectrum today. I also serve on the Autism Society of Oregon’s Board of Directors as both the first person on the spectrum to serve and as the longest-tenured member of the organization. What else would you like for Spectrums readers to know? JC: My website, www.jonathanchase.net, has details on my mentoring services and presentations. I also have a TED Talk, Music as a Window into the Autistic Mind, which has over 200,000 views on YouTube. I run a Dungeons & Dragons group for teens & young adults on the spectrum. We meet in SE Portland every other Thursday, and the fee is $25 per session. I will be running more boffer (sword fighting) groups in the spring and summer, too. How can readers get a copy of your book and connect with you? JC: Both the print and e-book are for sale on Amazon and the link is on my website www.jonathanchase.net. People can contact me directly through the website or at jonathan@jonathanchase.net to order signed copies or bulk purchases. I offer discounts to schools and organizations who are buying numerous copies for their staff. In addition, I am donating 50 copies of the book to schools throughout the country. Those will be going out later this winter. There are also a limited number of signed copies for sale through the Autism Society of Oregon, and 25 percent of each sale goes to ASO.

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Educational

Toy Guide

Supporting a child’s special interests

By accepting children on the autism spectrum, their learning differences and social culture, we help nourish self-esteem and can often open the door to more receptive, enriching and empowering play. Here are 10 points to consider when purchasing toys for children on the autism spectrum. By Karen Krejcha

Children on the autism spectrum often engage in play in different ways than their neurotypical peers—and that’s okay! Medical and educational professionals agree that play is very important in a child’s developmental process. Through play, children practice a variety of skills, many of which show learning, planning and interpersonal development. Autistic children may be seen playing by themselves or playing with toys in ways that are different than their typically developing peers. As adults, you have the opportunity to use play to get into a child’s world. Accept from the outset that just because a child may be neurologically wired differently doesn’t mean he or she doesn’t want to have fun, be creative or feel supported. Try to understand where the child is at and use positive reinforcement during play to encourage the learning process.

Consider the child you are buying for keeping safety in mind. As the saying goes, if you’ve met one child with autism, you’ve met one child with autism! Although there are commonalities, no two children with autism are the same. Some children are oral seeking and will put toys in their mouths. Others like to take things apart and need toys with durability. A considerate gift means considering the recipient.

Support the child’s special interest. Does the youth you are buying for have a special hobby or fascination? Trains, horses, cars, dinosaurs, animation, stuffed animals? Purchasing a toy that engages the child and appeals to a child’s special interests increases the likelihood the toy will be used repeatedly. It also provides playmates a wonderful opportunity to use the appeal of that special interest to relate to the child.

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Gifts, continued from page 32

Think about developmental ability rather than age when looking at learning toys. Focus on building confidence and independence while developing skills.

Concrete minds crave clarity and predictability. In her 2012 book, Asperkids, An Insider’s Guide to Loving, Understanding and Teaching Children with Asperger Syndrome, Jennifer Cook O’Toole, an Aspie mother to three Asperkids, emphasizes that the way children on the autism spectrum think is different than their neurotypical peers. “Our concrete-seeking minds crave clarity and predictability. Most of our days are trying to navigate a world that is counter-intuitive to the way are brains are hard-wired so we seek comfort in toys and activities that help calm us.” Cause and effect toys are logical and appeal to more concrete minds.

Think about toys which engage but do not aggravate the senses. A lot of learning comes from what we take in through our senses, however almost all children on the autism spectrum have sensory challenges and sensitivities. For those that use motion to regulate themselves, consider toys that allow swinging, climbing, spinning or bouncing. For kids with smell or hearing sensitivities, avoid toys which are scented or make sudden unpredictable noises. Think of toys that are calming and tactile friendly. For children experiencing sensory overload that need a break to calm, toys like bubbles, stress balls and soft fidget toys can help. Consider a play tent as a quiet area and keep items like visual timers, weighted blankets, soft huggable stuffed animals and toys with tranquil music.

with apps, special interest comfort toy, hand fidgets, autism chew toys (for children who are very oral), puppets (to roleplay), a visual timer and a favorite book.

Think about skill-building. Whether you choose a paint-by-numbers art project, a card game, a board game or puzzle, think about incorporating different learning skills through play whether it be gross motor, fine motor, verbal, reasoning or memory.

Think about toys they love that can help you build social interaction and get into their world. When you see a child stacking blocks of the same color, lining up cars or categorizing their collection, remember that imaginative play comes in many forms. To those not on the autism spectrum, repetitive tasks may seem mundane and unimaginative. To children who are autistic, predictability is comforting, calming and prepares for the development of higher level learning. If your child lines up cars or stacks toys in a pattern, play along and make your own pattern. Instead of stacking by color, stack by size. Instead of lining up by type of car, line up alphabetically. Then take that a step further by creating a visual map or diagram and building to that visual model. Remember that turn-taking, sharing, social interaction and manners can all be modeled while still showing respect to a child’s preferred style of play. In conclusion, whether buying for a boy or a girl or on the autism spectrum, all kids want to have fun. When you buy toys that inspire a child, they’ll in turn inspire you too!

Think about portability. It is often challenging for children with autism to break routine, wait in lines or deal with unexpected circumstances. Create a to-go bag of portable toy favorites that travel with you. Suggestions include a drawing pad, crayons, flashcards, tablet

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health & wellness DEVELOPING A SENSE OF WELL-BEING AND WHOLENESS

IN THIS SECTION Great Expectations............................................................................... 35 Surviving Holidays and Breaks in Routine........................... 36 Blackbelts for Butterflies................................................................. 38

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Great Expectations Lowering the bar to increase confidence during the holidays By Joanna Blanchard, MOTR/L

Five years ago on Christmas morning, my family experienced a first: opening gifts with everyone together in one room. We sat together as our son Dan, who is on the autism spectrum, opened present after present, tearing the paper and looking at us with excitement. He asked us for help to free his new toys from the confines of the store packaging. We froze, looked at each other in silence, tears filling our eyes. I remember thinking about how “normal” this felt, like my own childhood Christmases. It was a powerfully emotional moment. Growing up, my family created magical holiday celebrations that created honored traditions. However, as an adult I realized it is a pretty anxiety-inducing time for many of us. My desire to make it an epic event for my kids and loved ones became a challenge after autism interfered. The pure joy on a child’s face when opening presents fills a family with pride and is a Christmas morning dream. However, when your child shows little interest—or even distress—in these perceived “picture perfect” moments, such as answering the door to grandparents standing there, sitting down to a traditional dinner, or decorating the tree, it can be crushing to a mom with sugar plums dancing in her head. The magic of Christmas was what made it so powerful as a child. Believing in things you couldn’t see, feeling the power of faith and tradition can create such strong feelings of love and togetherness. Teaching our kids about the value of giving to someone else, spreading peace, goodwill and being there for others is an essential part of making the holiday season a hopeful, uplifting time in our Western culture. These were all things I wanted to impart on my children. I wanted Christmas to be about spirit, tradition, love and family. (Oh, okay, I also wanted to blow their MINDS with awesome presents and trees and create that giddy delirium of wonder that I remembered as a child). You see, my husband and I had long given up expectations of these idyllic Christmas mornings. Usually Dan had to be coerced into “opening” a present with me, then would run out of the room, or pace around the periphery, either too overwhelmed or intimidated to join in. This became our

norm over the years and looked very different than other families’ Christmas morning rituals. Families of children on the autism spectrum deeply want to share this sacred time of year, often making it difficult to “let go” of expectations for our kids—and also for ourselves. We learn quickly that the holiday season tends to involve activities and can place requirements on children that set their family up for disappointment: 1) High expectations and emotions surrounding traditions including food, family, rituals and celebrations that are different from the rest of the year. 2) Different schedules, decorations and added activities (concerts, parties, assemblies, church programs, etc.). 3) “Hidden Rules:” Holidays are abstract concepts based on faith, stories and sentiments that are deeply meaningful and emotionally charged for many people. However, these can be confusing concepts for our more “black and white” thinkers. 4) The frenzied pace of activity and prep, combined with the constant overstimulation and onslaught of media and retail pressure, heighten anxiety. 5) Like birthdays, Christmas can be a big, fat, month-long reminder that our child is far behind their peers. Other moms are buying age-appropriate toys like Legos, and action figures while we are still looking at baby toys, balls and chewy tubes. 6) Family members often ask what your child wants for Christmas and may misunderstand or seem unsympathetic to a request. 7) Children may have no interest in parties, decorations, cookie decorating or other traditional activities that leave families feeling disheartened. Because of the delay in development, I often didn’t know what Dan would want for Christmas, thinking, “What kind of a mother doesn’t know what her child wants for Christmas?” I would research for hours for toys that would be “good for him” or “therapeutic” and create extensive lists on Amazon. However, once my husband and I learned to change our expectations, Christmas got easier. We learned to let go of Continued on page 41

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HEALTH + WELLNESS

Holidays and Breaks in Routine ‘Tis the Season to plan for change

By Tara O’Gorman, MSW

Children with Autism Spectrum Disorders (ASD) generally cope best with routine and structure. Clear expectations and preparation for any possible detour in routine are important. While some kids appreciate the decompression time afforded by a break from school or other activities, some are more impacted by the stress of the change in the norm. During the holiday season, sensory challenges such as holiday music blaring from store speakers, bright colors, packed shopping centers and visits with extended family members and friends during gatherings add to the stress, even for those who are otherwise enjoying the downtime from school.

Every child is different, and comfort zones evolve over time. Often, the best way to help our children is to prepare them in advance for the social and sensory challenges that come with family gatherings, public outings, and the extra stimuli of holiday decor. Creating a daily plan that involves your child’s most soothing activities, including reading, play, video game, and quiet time, can help him or her get through those weeks until the school routine begins again. Keeping a consistent and structured schedule, as regularly as possible, also may help avoid sensory overload when holiday activities are mixed into the routine.

When my son was young, our family absolutely dreaded the two-week holiday break. Just as he was finally settled into the daily routine of school and all its expectations, everything changed. He was a child who thrived in routine and structure and was easily overwhelmed by the sensory challenges of holiday excitement. While many kids we have known looked forward to those weeks as a time to decompress from the stress of school, our child asked daily, “Can I go back to school tomorrow?” So we held our breaths and barreled through those weeks, praying for some calm days and more happy moments than meltdowns.

When venturing out for holiday parties or visits with family and friends, try to accommodate the need for a safe, quiet escape when your child is feeling overwhelmed by the overload of the loud crowds, the Christmas lights, the smells, and the constant activity. Sometimes, preplanning is helpful in avoiding sensory meltdowns. Other times, unfortunately, parents will need an ‘exit plan’ for parties or need to cancel last minute plans because the negative impact on a child with ASD outweighs the planned fun. It is not always easy to explain to people that a sudden departure could happen, but parents can prepare for that chance, as well. Continued on next page

Trying to maintain a regular schedule, with as much routine and structure as possible, will help minimize anxiety during the holiday breaks.

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Holidays, continued from page 36 There are times parents feel embarrassed and frustrated, trying to cope with meltdowns that happened because we pushed things a little too far, hoping our child would be okay this time or just for a few more minutes. As parents, we sometimes fail to intervene quickly enough. We feel guilty for putting our children into situations we know are difficult for them, hoping this time will be a positive experience. Younger children in particular do not always recognize when they are becoming overwhelmed or recognize the cues that a meltdown is imminent, and parents often must be extra vigilant during these times of sensory overload. Travel away from home poses different challenges. Children are physically and emotionally removed from the comforts of home, and easy escapes to a quiet zone are not always easy to manage. Noise canceling headphones or earphones, especially for kids who have handheld electronic devices or smart phones, can be valued distractions. Try to control the sensory input as much as possible during part of the day so children have time to decompress from too much excitement and social expectation. For first-time plane riders (or for those who need a refresher), outline the steps involved in waiting for and boarding planes and what to expect during the wait, takeoff, in the air, and during landing. Some airlines and airports have travel simulation programs for families with special needs. Having a favorite comfort item, such as a stuffed animal, iPad, books, and snacks during the trip may help the travel experience run more smoothly, whether traveling by plane or by car. Dietary challenges often arise during the holidays. Many children with ASD have special diets, including glutenand/or casein-free, low sugar or the Feingold diet. They may also have allergies or food sensitivities. This may be a topic worth discussing in advance. Children are often pressured to try new or unusual foods at gatherings. Many children do not know to avoid certain foods and will accept anything that is given to them. Others are very picky eaters who are frustrated by feeling forced to try a variety of foods, with unexpected flavors or textures. Often, children overindulge in sweets during the holidays, and parents may feel safer bringing foods that are safe and easy options to avoid upset. Try to coordinate with family and friends to help them understand restrictions and expectations. Affection can be a difficult topic for any family living with ASD. Holiday gatherings inevitably involve LOTS of hugging and kissing. The unwanted or intolerable physical affection can quickly lead to outbursts or emotional shutdown. Many children with ASD need to be in control of affection given and received. Allow safe physical contact on the child’s terms rather than according to social convention.

It can take many years of frustration, hoping, trying, crying, and ultimately having to abstain from certain activities before we truly understand how to avoid or minimize sensory overload. It may take several more years to make the necessary changes and to allow for our children to learn to adapt and enjoy some places and situations and to accept that there may be some things they may never be able to handle. As my son got older and learned to self-regulate more, his adaptation to change flip-flopped. Long weekends and holiday breaks became a chance to unwind and regroup. He has learned to value time alone rather than seeking constant entertainment and engagement from the outside world. The breaks give him a chance to relax, control sensory input, and create social and personal settings that feel most comfortable for him. Now that he is a teenager, he mostly chooses the activities himself. He does not enjoy packed Christmas tree lighting ceremonies, so he chooses not to attend. He enjoys small parties with family and friends who understand he may begin feeling overloaded and needs time to himself to regenerate. While we still make some choices for him (like occasionally forcing dinner with extended family, which pulls him out of his comfort zone), we now encourage him to advocate for himself. We give him the option to attend events such as New Year’s Eve parties, and he is allowed to gauge for himself whether or not he will be comfortable and feel safe in a large crowd or party atmosphere. He may decide at the last minute that it is not something he can handle that day. Or he may last an hour and decide he can’t make it to midnight. And we always have an escape plan for such situations. The holiday break can be much less stressful when preplanning with our children and with visitors or hosts. Trying to maintain a regular schedule, with as much routine and structure as possible, will help minimize anxiety during the holiday breaks. When we are able to take cues from our children, allow them to advocate for themselves, and embrace their need to avoid or limit certain experiences, often the new and unexpected is easier to navigate. When our family and friends are understanding and supportive of our situations, there is far more joy in the holidays, for everyone. Tara O’Gorman, MSW, joined Autism Empowerment’s Board of Directors in October 2016. She is an independent consultant and advocate with SpectrAbilities, dedicated to working with individuals and families living with Autism Spectrum Disorders (ASD) and consulting for organizations working within the ASD community. She is a group facilitator for adolescents and young adults with ASD and is the proud mom to two sons, including an Asperger’s teenager.

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HEALTH + WELLNESS

Blackbelts for Butterflies: Jiu-Jitsu for Autism

Dedicated to Dylan Hockley, a beautiful butterfly By John Krejcha

On Friday, Dec. 14, 2012, tragedy struck at Sandy Hook Elementary School in Newtown, Conn. where 20 children and six educators were fatally shot by a gunman who later committed suicide.

day for the two of us because it was the day we were scheduled for a C-section to have our first child. At 8:20 a.m., our beautiful son was born into this world, healthy and perfect in every way possible for two new parents.”

As the stories of victims unfolded, the world learned about Dylan Hockley, a six-year-old boy on the autism spectrum found in the protective arms of his special education teacher, Anne Marie Murphy. She was trying to shield him before both passed away.

As Rich went into the waiting room to share the good news with his in-laws, he noticed everyone gathering around the TV. That’s when he caught the first bit of news about the school shooting in his home state. Three hours later, Rich was at the nurse’s station getting ready for his baby’s first bath.

Nicole Hockley talked about Dylan at his memorial. “Dylan loved trampolines, plain spaghetti with garlic bread and the color purple and most of all, he loved

Know that your actions cannot be hoarded, saved for later, or used selectively. By your hand, millions— billions—of lives will be altered, caught up in a chain of events begun by you this day. —Andy Andrews, The Butterfly Effect

everything butterfly related.” Nicole told a special story at the memorial about the time she asked Dylan why he would sometimes flap his arms up and down when he got excited, as some autistic children are known to do. She wasn’t expecting a response because his language skills were still underdeveloped, but Dylan did answer: “Because I am a beautiful butterfly.” On Friday, Dec. 14, 2012, another story unfolded 48 miles away at Hartfield Hospital in Hartfield, Conn., a story of new life. Rich McKeegan recalls, “It was the most exciting

He shares, “I was in a state of amazement looking at my son, watching his every movement, not paying attention to the nurses on the phones until one spoke up pretty loudly stating that something was wrong with the school shooting. Ambulances were going out, but none of them were coming back with casualties. At that single moment in time, my experience of fatherhood was now intertwined with an event that will forever cast a shadow of sadness in my heart.” Continued on next page

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Butterfly, continued from page 38 A few days passed and Rich knew in his heart he had to do something to help with this senseless tragedy. At the time, Rich had been training for five years in Brazilian Jiu-Jitsu (BJJ) and had achieved the rank of blue belt. He thought of his brothers and sisters in the jiu-jitsu community, people with huge hearts and people of honor. Together with his friends, they created 500 patches for BJJ players to put on their gi uniforms to raise money for the UConn Scholarship Foundation for the victims of Sandy Hook.

leadership program inspires children to go above and beyond for each other and create acceptance and empathy leading to inclusion for all.

The patch project spread throughout the country and led to a charity seminar in April 2013 with black belt and purple belt trainers attending from as far away as Oklahoma and Texas. Rich soon made a connection with Jennifer Jeffrey Carello, a woman who trained in Newtown and was friends with Ian and Nicole Hockley whose son Dylan passed away at Sandy Hook Elementary the same day Rich’s son was born.

Rich shares, “James Foster has supported BB4BF since the beginning and came to Connecticut to teach the first two years we held our events. When the idea came up of heading to the West Coast, James made it a point to hold the first event outside of Connecticut at his school in Kent, Wash. We like to make sure the money stays in the state that we are traveling to. We chose Autism Empowerment because we wanted to make sure the money we raise goes to smaller nonprofits that might not have the same commercialism as the larger ones. Autism Empowerment was a natural choice after looking into AE and seeing all the great work they were doing.”

Shares Rich, “Somehow I was drawn to that little boy. Something inside of me hurt when I saw pictures of his little eyes smiling, his contagious laugh that was transparent even through a stolen moment.” Rich knew he wanted to do something meaningful to support the autism community and so he came up with the idea of putting together a Brazilian Jiu-Jitsu weekend super seminar, inviting black belt trainers from around the country to teach. Blackbelts for Butterflies (BB4BF) spread their wings, and their first mega-event took place during the weekend of May 18th, 2014. Rich reflects on the journey, “I had never imagined what this experience would turn into, I never imagined the emotions that would run so deep among so many. Every day I would introduce the black belts and thank all of them for their time. Every day I would choke up, fight back the tears from the sadness I felt from the tragedy and how proud I was to stand shoulder to shoulder with such amazing people. We had people from across the nation teaching, not only jiu-jitsu but life philosophy. Men that were warriors talked about their personal account and experience with this event and how it affected them. I watched warriors fight back the tears; their invincible armor shed as they were shown as fathers, uncles, teachers, role models, and the amazing, caring people they were.” “That weekend I saw so many of my jiu-jitsu brothers and sisters come together for jiu-jitsu, for family, for emotional support of each other. I sat and watched all weekend people sharing techniques, sharing stories, and sharing embraces of hugs and love in a way that I had never imagined when I started out on this journey.” Proceeds went to benefit Dylan’s Wings of Change, a foundation devoted to children with autism and created in Dylan Hockley’s memory. Their unique Wingman

The first Blackbelts for Butterflies event was so successful that the special events continued. Some supported Dylan’s Wings of Change, while other events held in other areas of the country benefited other autism organizations. In August 2016, BB4BF came to Washington and event proceeds were donated to Autism Empowerment.

There are no typical events. “We have been working and evolving every event. Because this is so very new, we are a work-in-progress. Every event is extremely special and unique; between the black belts that come and teach and the attendees which create the atmosphere. I always like to have guest speakers at the events that can speak firsthand of how autism has impacted their lives. I have family members discuss the challenges they personally have with their children who are on the spectrum as well as dispel myths and stereotypes. I always talk about Dylan in the beginning because his story is the heart of BB4BF. Dylan is the driving force behind us, so I speak about how his story impacted me to start BB4BF and Dylan’s father, Ian Hockley always attends our events in Connecticut to talk about his amazing son and his legacy.” When asked about future events, Rich answered, “We want to grow organically and make sure BBFBF continues to share the message of positive impact. We are looking to do three events in 2017 in new states and bring more black belts into the fold of teaching. We are out here accepting everyone for who they are and we care. We as a community believe in acceptance and are going to continue to educate and assist families. There are some talented people out there that train jiu-jitsu that are on the spectrum that I am friends with. Eventually, I would love to develop a program for children on the spectrum and with disabilities so we can share our passion for the art with more people. BB4BF is still growing, and in the future, I know we will have more people on the spectrum involved. The year 2017 is about Autism Acceptance. We want to drive that message this year.” No matter what the future holds, Rich wanted people to know, “As we focus on the future and the goals we want Continued on page 47

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therapy THERAPEUTIC OPTIONS AND RESOURCES

IN THIS SECTION Introduction to State DD Services..........................................................42 Partner Provider Directory.......................................................................44 Upcoming Autism Empowerment Events........................................46

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Expectations, Continued from page 35 what we wanted and adapted to what we had. Together, we decided what was most important and the traditions we needed to nourish ourselves during this time. We also considered what we wanted for our other child’s experience and our extended family. Then we consciously decided to work together and push through what we were going to hold strong to. Everything else we let go. For us it was the Christmas tree—it symbolizes so much more than a decoration to our family. Ask: What does your family love to do? Can you escape all of the external and internal expectations this year and distill it down to the real symbols that will feed your family’s soul during this winter? We approach December as a team, at the ready to comfort and work through the wailing, messy times together. (Temple Grandin calls it “stretching” the child–don’t surprise them, but prep them and stretch them). Here are some ways that may help reduce stress for everyone during the holidays: • Create social stories about your family’s traditions, faith, beliefs and what to expect around the holidays. One example could be “Christmas at Our House.” • Reach out to your school staff for help prepping around this time of year. • Decorate your house slowly and gradually throughout the month of December. • Don’t be afraid to cut back on social engagements, activities and obligations. This reserves emotional resources and physical energy to use in other areas. • Travel to home improvement stores to view lights, trees, holiday decorations and more. • Honor your child’s differences and model flexibility. Be sure to exhibit the same compassion you are asking others to show your child. • Communicate your expectations to family, friends,

co-workers, visitors and neighbors. Is it more lights and less food? Be honest about what is too much and what will work within your family’s dynamics. • Don’t be afraid to start new traditions of your own! (Every Thanksgiving, our family escapes to the coast to go fishing because it works for OUR family.) • Take one year at a time. Next year could look very different for your family. After a few years, it has paid off. Dan has also matured and eventually accepted and even loves the Christmas tree. (Complete with an episode of weeping when the tree comes down on January 2.) Just as you would for any challenging school or novel activity requiring good behavior, prepare and support your child. Have snacks, prep with social stories or intense sensory play beforehand, give extra time to process and model how it’s done. Also check your own rigidity related to holiday rituals, foods and traditions. Can you show yourself and others some of the same compassion we will ask them to show our children? Demonstrate the same patience with your in-laws, your siblings, your neighbors and your co-workers during this highly social time. Everyone has their own story. Can you listen for theirs? Joanna Blanchard is an occupational therapist and the mother of two children on opposite sides of the spectrum. She is the owner of Everybody Stims Occupational Therapy in Vancouver, Washington and can be reached at joanna@ everybodystims.com

Demonstrate the same patience with your in-laws, your siblings, your neighbors and your co-workers during this highly social time.

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THERAPY

Introduction to State DD Services Navigating systems of support

By John Krejcha

It does not matter if you call Oregon or Washington home, both states have funding streams in place to help support youth, adults and families impacted by Intellectual and Developmental Disabilities (I/DD), including autism spectrum disorder (ASD). Navigating these systems of support can be confusing, particularly for individuals and families who are new to a diagnosis or who have recently relocated. In this introductory article, we explore for both states: • Where to look to find requirements to access developmental disability services • What kind of services may be available • Who to contact for additional assistance State level agencies: • In Oregon, the Oregon Department of Human Services (ODHS) assists families and individuals with I/DD through the Office of Developmental Disabilities Services (ODDS). • In Washington, the Department of Social and Health Services (DSHS) assists families through the Developmental Disabilities Administration (DDA). In addition to state services, most counties in both states have additional programs that serve their local developmental disabilities community. Requirements: While both states have different eligibility requirements to access support services, each state aims to assist individuals and families within the I/DD community, including those with an ASD diagnosis. In both states, regardless of how much income a family makes, specialized services can be accessed based on the needs and abilities of the individual. OREGON: In Oregon, state services flow through each county’s Community Developmental Disability Program (CDDP) and they will be the ones who determine eligibility. Workers in each county can help with the necessary papers you need and can also guide you through the eligibility process if requested. All CDDPs use the same application for Developmental Disability Services. In Oregon, the paperwork can be filled out in English, Spanish, Russian or Vietnamese and can be downloaded online.

Website for eligibility: www.oregon.gov/DHS/SENIORSDISABILITIES/DD/Pages/eligibility.aspx Community Developmental Disability Program offices within the Greater Portland area: Clackamas County: Clackamas County Mental Health 503-655-8640 Hood River County: Mid-Columbia Center for Living 541-386-2620 Marion County: Marion County Developmentally Disabled Services - 503-588-5288 Multnomah County: Multnomah County Developmental Disability Program - 503-988-3658 Washington County: Washington County Developmental Disability Program - 503-846-4737 WASHINGTON: In Washington state, the services flow through the Developmental Disabilities Administration (DDA) which has broken the state up into regions. Workers at these offices can help assist you and send an intake packet. You can also download the forms online. Website for eligibility: www.dshs.wa.gov/dda/consumersand-families/eligibility Regional offices in Southwest Washington: Region 1: Klickitat County - 1-866-715-3646 Region 3: Clark, Cowlitz and Skamania Counties 1-888-707-1202 Services Available: In both Oregon and Washington, after the application process has been completed and a child or adult has been determined as an eligible client for developmental disability services, then comes a personal assessment process to see what kind of services a person or family may access. Depending on the age and abilities of the client, the assessment meeting varies in length and may last many hours. This meeting usually takes place in the client’s home and includes a local Case Manager, the client and his/her parent(s) or legal guardian. OREGON: Depending on assessment results and the age of the client, funding for the following support services may be available: • Respite care for family caregivers • Parent/Family Training • Help with everyday activities like preparing meals, Continued on next page

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State, Continued from page 42 bathing, feeding and shopping • Change to make your home more accessible, including assistive technology • Help with behavior challenges • Supports in the community • Employment supports In most counties, disability-related nonprofits and family-to-family networks are also available for direct and indirect support. WASHINGTON: There are three main areas of support for ages 3-21 available depending upon assessment: Personal Care, Family Support with Respite Care, and Home and Community Based Services. Adult services such as housing, employment, and independent living are also available. As of December 2016, the Washington Developmental Disabilities Administration is actively enrolling individuals to their Individual and Family Services Waiver (IFS). The IFS waiver helps support families who have a family member with developmental disabilities who is three years of age or older by providing a choice of services to help maintain and stabilize the family unit. There is currently funding available for up to 6,500 clients. Families previously declined eligibility are welcome to reapply. Families with a child or adult who were previously assessed as eligible but placed on the No-Paid-Services caseload are urged to contact their local Case Manager to be taken off the waitlist so they may access paid services.

Potential services available may include: • Respite Care at home or in the community • Nursing Services, including specialized medical equipment and supplies • Assistive technology, including environmental and vehicular modifications • Community engagement support • Supported Parenting Services • Peer Mentoring • Person-Centered-Planning Facilitation • Physical Therapy, Occupational Therapy and Speech Therapy In Southwest Washington, local Parent Coalitions and disability-related nonprofits are available for direct and indirect support. As an eligible service isn’t a meaningful service unless clients can utilize it, both Oregon and Washington are currently working to recruit qualified contracted professionals to provide the developmental disabilities services listed above. In Clark County, Washington this includes a DDA Meet and Greet on Jan. 25, 2017 for clients, their families, community providers (potential and contracted) and DDA staff. In conclusion, each state provides a variety of Developmental Disability support services. The process of eligibility, assessment and finding qualified providers to work with does take time so it’s important to get started soon after a diagnosis is received. The time you invest now will hopefully provide positive dividends for your family in the future.

State government resources: • Oregon Department of Human Services www.oregon.gov/dhs/ • Oregon Council on Developmental Disabilities http://ocdd.org/ • Washington State Department of Social and Health Services, Developmental Disabilities Administration (DDA) www.dshs.wa.gov/dda • Informing Families is a resource provided by the Washington State Developmental Disabilities Council, in collaboration with the DDA to offer trusted news and navigation support to individuals and families impacted by I/DD. www.informingfamilies.org www.spectrumsmagazine.org