Spectrum Life Magazine Winter 2018 Issue from Autism Empowerment

Page 1

FREE

SpectrumLife PORTLAND AND SW WASHINGTON’S ONLY MAGAZINE FOR THE AUTISM COMMUNITY TM

m a g a z i n e

KARYL FRANKIEWICZ - MISS NATIVE AMERICAN USA A NEW JOEL SUZUKI NOVEL, JUST IN TIME BOLD PEDIATRIC THERAPY THE ABCs OF LRE KAZOODLES KID-POWERED TOYS ASK SPECTRUM LIFE - HOLIDAY EDITION

WINTER 2018


NEW! TWIDDLE®NATHAN

NEW! Lightly-weighted for an extra sense of security and stability, the TwiddleNathan helps youngsters find that “just-right zone” for maintaining attention and appropriate behavior for tasks and activities. Crafted from cozy, durable fabrics and plush fleece, the Nathan features high-grade fidgets attached with ribbon loops that snap, to enable switching around and personalizing fidgets for variety’s sake, training purposes, or the child’s own preferences. Ideal for home, therapy clinics, and ”safe spaces” at school and other group settings.

TWIDDLE®CATS

TWIDDLE®PUP

www.4twiddles.com

Try a Twiddle® today!

TWIDDLE®CLASSIC

TWIDDLE®SPORT

Our Pledge: $1 for each TwiddleNathan sold will be donated to the Autism Society of America.


WINTER 2018

contents

14

KARYL FRANKIEWICZ - MISS NATIVE AMERICAN USA

FEATURED SECTIONS ADVOCACY

8 10

Autistics Present Symposium Stories from the Spectrum: Angel Nicki Mann. Helping the “Poor and Disabled” Is our Spirit of Giving always in the right spirit?

EDUCATION

30 32

LIFESPAN

14

35

16

Autism Serves Across the Lifespan We can all make a positive difference through volunteering.

36

19

Holiday Appeal Wish List How you can support Spectrum Life’s Magazine’s holiday wish list.

22 24

38 40

A New Joel Suzuki Novel, Just In Time May the Fourth Book be with you! Kazoodles Toy Store Kid-powered toys for all ages and abilities.

Overcoming Executive Functioning Deficits Empowering students with Google Classroom.

HEALTH + WELLNESS

Karyl Frankiewicz - Miss Native American USA Ambassador for the Autistic and Native American communities.

Recreation

The ABCs of LRE Least Restrictive Environment and placement decisions.

Spectrum Life Resource Directory Spectrum Life helps you find autism-friendly service providers. Ask Spectrum Life Questions focus on support for the holiday season. Fear, Anxiety and Autistic Behavior Work WITH us, not ON us. Ask the Personal Trainer Ryan Lockard answers questions about Health and Wellness.

therapy

43 46

BOLD Pediatric Therapy Center Emboldening children to be their best. Upcoming Autism Empowerment Events Support Groups, Social Clubs and Special Events.

www.spectrumlife.org

3


FROM THE PUBLISHER

SpectrumLife TM

m a g a z i n e

WINTER 2018 | VOLUME 7, ISSUE 4 SPECTRUM LIFE MAGAZINE TM A program of Autism Empowerment TM Karen Krejcha, Autism Empowerment, Publisher Dave Born, Graphic Designer

Welcome to the Winter 2018 issue of Spectrum Life Magazine! I find it very appropriate that the day I initially wrote this was World Kindness Day, November 13th, 2018. We can all benefit from more kindness in our lives. Let’s make sure kindness matters each day! This holiday season, the Ambassadors for Acceptance of All Abilities at Autism Empowerment and Spectrum Life Magazine are thankful for you – the beautifully diverse members, advocates and allies who are part of the autistic and autism community and our world. Although we are each traveling on a unique journey, you do not have to be isolated. We are here to meet you along the way. This issue completes the first full year under our new name, Spectrum Life Magazine and our sixth year in publication. With each issue, we aim to bring a diverse range of educational, interesting, inspiring and empowering pieces that shine a light on the strengths and challenges in our community. I’m pretty excited about our cover. Karyl Frankiewicz, Miss Native American USA for 2018-19 is part of our tribe! Her platform is to spread Autism Awareness and Acceptance in both the Native American and Autistic communities. You can read our exclusive interview with Karyl on page 14. We believe that all people deserve a life free of stigma and full of opportunity for friendship, relationships, education, employment, security, housing, faith, and lifelong learning. If you agree, we invite you to join the Autism Empowerment movement and become an Ambassador for Acceptance of All Abilities. We invite you to join us and invest in us as we positively change the world to provide a culture of autism acceptance, enrichment, inspiration, and empowerment. Learn more on page 16.

Editorial Advisory Board: Amy Donaldson, Ph.D., CCC-SLP Laurie Drapela, Ph.D John Krejcha Tara O’Gorman, MSW Heather Parrott Brian Tashima Mailing address: Autism Empowerment P. O. Box 871676 Vancouver, WA 98687 (360) 852-8369 www.AutismEmpowerment.org spectrumlife@autismempowerment.org Autism Empowerment is a 501(c)3 nonprofit devoted to promoting a culture of acceptance and empowerment for children, teens, adults and families within the Autism and Asperger community. Autism Empowerment makes no warranty, guarantee, endorsement or promotion of any service provider or therapy option listed in this publication or our websites: AutismEmpowerment.org and SpectrumLife.org. This is a free community magazine created as a courtesy to the public. Autism Empowerment cannot be held liable for any action or decision based upon information found in this publication or our websites. It is the responsibility of individuals to discuss any therapy or treatment option with their care team. Every effort is made to ensure accuracy and verify information, however readers using this information do so at their own risk. No part of this publication may be reproduced or transmitted without prior written consent from the publisher, Autism Empowerment. © 2018 All rights reserved.

ON OUR COVER

Wishing you and those you love kindness, joy, peace and fulfillment this holiday season and always.

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

Karyl Frankiewicz is the reigning Miss Native American USA 2018-19. See our cover story on page 14. Photo courtesy of Jeremy Wilson

4

www.spectrumlife.org www.spectrumsmagazine.org


Season’s Greetings! Thank you for being a reader of Spectrum Life Magazine, a nonprofit publication of Autism Empowerment. We hope you have enjoyed our four seasonal 2018 editions. We have a favor to ask. We bring quality editorial content, resources and connection opportunities for youth, adults, and families impacted by autism. Throughout each month we positively partner with autistic advocates, parents, educators, agencies and professionals in many fields. We have not yet charged locally for distribution of our magazine because we want everyone in the autism community to receive quality enrichment and support. The need in our community is great. (And so are you!) But... Spectrum Life Magazine is expensive to publish. This issue, we printed 12,000 copies and distributed for free to 500 locations in OR and WA. As a nonprofit charity, we rely on the generosity of individual donors, businesses, and partners like you for support. We NEED your help TODAY! If you believe that our magazine brings value to the autism community, please support us by making a donation to Autism Empowerment this holiday season. ANY amount helps! Thank you!

www.autismempowerment.org/donate Or mail a gift payable to Autism Empowerment to:

Autism Empowerment, P.O. Box 871676, Vancouver, WA 98687 Tax ID #45-2455219. Autism Empowerment is a 501(c)3 nonprofit charity.

111111111

5


advocacy EMPOWERING CHANGE WITHIN THE AUTISM COMMUNITY

IN THIS SECTION A Symposium on Autistic Culture & Identity.........................................8 Helping the “Poor and Disabled”................................................................. 10

6

www.spectrumsmagazine.org


3

Free Resources... for Parents and Caregivers of Children with Autism from Seattle Children’s Autism Center

The world of autism spectrum disorders is constantly changing and we at Seattle Children’s Autism Center are eager to share with parents and caregivers the latest therapies, research, news and tips for families.

1. The Autism Blog

theautismblog.seattlechildrens.org We provide information that may be helpful for raising a child with autism. Posts are written by physicians, nurses, psychologists, and family resource staff who are knowledgeable about the diagnosis and the latest in treatments and therapies are primary contributors to the blog. Topics range from selecting a summer camp to sibling support to new research findings to our perspective on the latest news and information about autism.

2. Autism 101

Available in-person at Seattle Children’s or by teleconference Autism 101 is a 90-minute presentation providing information and support for parents and families of children recently diagnosed with an autism spectrum disorder (ASD). Topics include up-to-date, evidence-based information about ASD, behaviors associated with autism, autism prevalence, treatments available and resources for families.

3. Autism 200 Series

Available in-person at Seattle Children’s or by teleconference. Watch past lectures on our website. Autism 200 is a series of 90-minute classes for parents and caregivers of children with autism who wish to better understand autism spectrum disorder. Classes are taught by faculty from Seattle Children’s and the University of Washington and other community providers. Topics include transition to adulthood, early intervention and school support. Each class includes time for questions.

Learn more or register at seattlechildrens.org/autism or by calling 206-987-8080. For information related to setting up a teleconferencing site for the Autism 101 or 200 series in your community, contact James Mancini at james.mancini@seattlechildrens.org or 206-987-3481.

7


ADVOCACY

STORIES from the SPECTRUM Autism from an Autistic perspective

By Angel Nicki Mann

Autistics Present:

A Symposium on Autistic Culture & Identity

On Saturday, October 21st, 2018, my adorable traveling companion and I made the three-and-a-half hour drive up to Bellevue, Washington to go to the Autistics Present Symposium. My traveling companion is nine years old. I just realized I could say that. She’s not the child of my first marriage, though... I’ve always been a “single mama!” Anyway...those who read my blog, Diary of An Alien, may remember that I went to the Autism Society Conference in Wisconsin last summer. This year I couldn’t afford to go to that, but then someone posted on Facebook about this one, and since it was right here in Washington, it was more doable. The main difference between the Autistics Present Symposium and the Autism Society Conference is that this one is created by, and mostly for, autistic adults. The Autism Society conferences are geared mostly towards parents of autistic children, and people who work with autistic children, and people who have or work with autistic teenagers who are reaching “transition age,” and then they may have one or two things geared towards autistic adults. When I was there, most of the autistic adults I saw were actually there because they were doing presentations, which were meant to help the neurotypical parents and professionals to better understand autism. At the time, I was excited about being in a place where I didn’t stand out, and could be myself. Yet I was still sort of an outsider, because everything there was designed for parents and professionals, plus some extra things geared towards the young children who were with them. At this one, there were a few parents and professionals floating around, but for the most part every single person was an autistic adult. It was very small and organized, and the time span was pretty short. I got there and was signed in at 9:45 am, and the whole thing ended by 4:00 pm. In one way this was cool because it made it more manageable... but also, it was just more compact and there wasn’t as much time to explore or make friends. I really wish it somehow could have been the whole weekend and included some activities or something, the way the Autism Conference does, but this time with everything geared towards autistic adults. As it was, it felt just like a blink, like a very quick glimpse of a world that I belong in. At the Autism Society Conference, the autistic adults who do tend to be there are brought by their parents, and they tend to be much closer to “transitional age”... 18 to 21... than to my age. At the Symposium, there were people of all ages there, but there were many who were my age or older, and who were living independently. Some might live with a parent or spouse, but they were independent as far as having their own activities and identities. They were just,

8

www.spectrumlife.org www.spectrumsmagazine.org

all, autistic people. Just autistic adults all gathered at the same place. I really don’t know how to explain it. If I were to use a metaphor, which I always enjoy, I might say, imagine you are a purple-skinned alien who was adopted at birth and brought to a planet where everyone has green skin. You’ve had the chance to meet some other purple skinned people before... perhaps once at an event that was mostly for green families who had adopted purple-skinned children... but this is one of the few times that you’ve ever been in a building where almost everyone had purple skin. Imagine you’ve spent most of your life very aware of your purple skin. You grew up being yelled at and scolded and told to just be more green. You’ve spent a lot of your adult life trying to blend in among the green people. You wore long sleeved shirts and floppy hats to try to hide your purple skin, but it always peeked through. As you grew older and became more comfortable and happy with your purple skin, you still felt self-conscious of it whenever you went out. When you went to that conference for families of purpleskinned people that one year, and you saw the others with the purple skin, you still sensed the green-skinned people looking around trying to figure out which green-skinned family member is escorting you, because really, this world is meant for the green-skinned. And then you go to this conference, and everywhere you look is purple skin. Ironically, for the first time in your life, among your own people, you feel more invisible than ever... because you could run naked through the halls with every inch of purple skin showing, and nobody would bat an eye, because they are all purple too. It is almost overwhelming. This is your tribe, your culture... but you will only be with them for six hours, and there is a tight schedule. During this tight schedule you attend classes and learn a lot, but then you have to leave and go back to your very green world. You are left with this feeling like you want to connect with ALL THE PURPLE PEOPLE IN THE WORLD! There were so many of them a minute ago! But now they’ve dispersed back to their own green families, and when you go back to the hotel where you’re staying, the green employees smile suspiciously at you. Whoa, I told you I liked metaphors! Okay, for the purple people out there who weren’t able to go, I’ll give you some more details of what I learned. First we had a keynote speaker, which was Lydia X.Z. Brown also known as Autistic Hoya. Lydia is a pretty famous blogger. Slightly more famous than me. Hahaha! Lydia was talking mostly about the fact that there are a lot of autistic people in the transgender community, and vice Continued on next page


Autistics Present:, continued from page 8 versa... but that sometimes autistic transgender people have been unwelcome at groups and activities meant for transgender people, because the transgender people didn’t want being transgender to be seen as a disability, and didn’t really want it being associated with autism. And also, that sometimes people with disabilities who were also transgender or gay are treated unfairly by people who make decisions for them. For example, an adult with Down syndrome who was transgender and started identifying as female after they turned 21 had family members file guardianship papers over the person because the family said that it was proof that the person needed to be protected. Another example was some people with disabilities who live in group homes not being allowed to go to LGBTQ events, because their guardians told the people who run the group homes not to allow them to go. The first class I went to was on disclosing about being autistic. The ladies leading the class suggested that it is a good idea to disclose about being autistic, because when you do, you are also advocating for other autistic people, and you’re showing that you don’t have the need to hide yourself. Some people talked about the same problem I’ve had firsthand, where you tell your employer you’re autistic, and they’re like, “Oh that’s nice,” and act all accepting, but once they realize that being autistic actually means something, the employers get like, “Ooooh, actually can you be a little LESS autistic please?” Then we had a break for lunch. I had to carry my pokey service dog, Lily all the way there, and by the time I got there the veggie sandwiches were gone, so I had to have a portobello salad. But it was very delicious. Lily ate the red peppers. I tried to give her a mushroom but she spat it out. We ate sitting on the floor in the hallway. The next class I went to was by The Neurotypical Wife, who was being interviewed by a giraffe, Jennifer Muzquiz, creator of Giraffe Party. The Neurotypical Wife has a Facebook page where she writes in a satirical way about the love and patience required to cope with her neurotypical husband. For the interview, the giraffe would say things such as, “How do you encourage your neurotypical husband to learn more neurodivergent behaviors? For instance, what do you do when he insists on making small talk?” And Neurotypical Wife would say something like, “Well, I reward him with pizzas whenever he behaves like a neurodivergent person. He’s making progress.” She’d say things like, “I’m an expert on neurotypical people, because I grew up with a neurotypical sister, and I also have been generous enough to marry a neurotypical person. I’m like a saint.” In case you haven’t figured it out, she’s basically mocking “autism moms” who write about how they cope with having autistic kids. Then people in the audience would say things like, “Can you tell us a little bit more about your husband’s toileting habits?” And she’d say, “I do post a lot on Facebook about his toileting, with pictures and everything.” Finally, the closing keynote speaker Kassiane Asasumasu talked about the history of the autism community... meaning the community of autistic people, more than the community of parents and family members of autistic children. She talked about how basically the autistic community was created online on message boards, how it has grown and changed over the years, and how some things have stayed the same or have repeated themselves. She also talked about the difference between “autistic” spaces and “autism” spaces. An autism space

would be something like the Autism Society Conference, which is about autism, where the Symposium is an autistic space because it is for autistic people. Fun fact: You’ve probably heard, for a long time, that it is important to use “person first” or “people first” speech when talking about people with any disabilities. I heard that a lot when I was first a paraprofessional in schools. “Person first” speech means to always refer to the person as “having” the disability or being “with” the disability. For example, if I am using person first speech, I should introduce myself by saying, “I’m Angel, and I have autism.” The idea behind this is to encourage people to see the person separately from their disability. However, many autistic people do not want to be separated from autism, because it is a huge part of them. They see themselves as autistic, not as “having autism.” I have always felt this way too, because saying I “have autism” makes it sound like I might put it down at some point and not have it anymore, or I might take an antibiotic and get over it. But I’ve always felt a little nervous about saying “autistic,” even about my own self, because the whole entire world would collectively say, “YOU MEAN YOU HAVE AUTISM!” Deaf people are similar... most deaf people prefer to be called “Deaf,” rather than “having deafness”. (“Having deafness” doesn’t even sound right, does it?) Then the Autistics Present Symposium was over. If I were to sum it up I would say, again, it was awesome to be around all of these autistic adults, and to hear from these particularly smart, accomplished, witty autistic people who were presenting. And I wish it could have been longer. Afterwards, I took Lily to a really cool park in downtown Bellevue, and we walked around so she could introduce herself to other dogs. She gets really happy when she meets other dogs, especially if they are about her size. She doesn’t really play with them at all... she just wants to sniff them, and watch them, and be around them. I wonder if Lily feels the same way, when she meets other small dogs, as I do when I meet other autistic people? She’s usually around me and other humans, plus assorted cats and medium-sized dogs. When she meets a small dog, is she like, “Oh my gosh, it is just like me! It is one of my tribe!” Is she secretly hoping that someday she will find a colony of small dogs and live happily ever after without humans, big dogs, or cats? Also, should I be referring to her as a dog with smallism? Or a person with small dogism? Great, now I’ll be awake all night contemplating that! Angel Nicki Mann grew up in Chicago. She and her service dog, Lily, moved to Washougal, WA in 2015. They also have a mischievous cat named Yoshi, and several fish. Angel loves animals, and enjoys volunteering at Odd Man Inn, a local sanctuary for farm animals. She also loves reading, doing arts and crafts, and writing. Visit her blog at: diaryofanalien1.blogspot.com. www.spectrumlife.org

9


ADVOCACY

Helping the “Poor and Disabled” Making sure our Good Intentions are not Ableist By Judy Endow and other times only you know because ableism is in the way you think and feel. This is tricky because when you are caught in it, the ableist thinking and feeling seems right and good, especially since ever so many people in our society participate in this status quo. Here are some examples from my own life along with examples of both my ableist thinking and hopefully, some more recent non-ableist thinking: 1) Toy donations where you purchase a toy and place it in a collection bin to be given to a “needy” child who somehow qualifies to receive a free toy. My Ableist Thinking: It is good to give to poor children. It is not their fault their parents don’t know how to handle money or can’t keep a job. The holiday season is upon us. Opportunities abound to volunteer for a variety of good causes. It makes me cringe because during my lifetime I have been part of these “good causes” – sometimes part of “the needy” that the rest of humanity is encouraged to help and other times part of “the help.” I cringe because I have made many mistakes, regardless of my group identity from year to year, as I shifted from “the needy” to “the help.” Please don’t get me wrong. There is absolutely nothing inherently wrong with helping others. It is something I consciously instilled in my children as they grew up, each holiday season choosing the projects to which we would donate our time and resources. Like others, I often purchase holiday gifts that support entrepreneurship of women in underdeveloped countries, disability groups and an assortment of charities. These things are nice and right and good. What is NOT nice and right and good is when our actions stem from us drawing a mental line-in-the-sand placing “those people” we are “helping” on the other side – over there, away from us. Often we are not even aware when our attitude slides into this direction because it is such a prevalent societal attitude that it actually seems to be right and good when, in reality, it is nothing more than ableism dressed in pious clothing for the holidays. Sometimes when ableism is tied to holiday cheer and goodwill it is easier to rationalize and to call it by other names such as the Christmas spirit or to think it is part of peace on earth and good will towards all men. Regardless of what you call it at holiday time or at any other time of the year, there is a way to figure out if what you are doing is ableism or considerate and helpful. Anytime there is the proverbial line-in-the-sand creating any “us versus them” groups you are dealing with ableism. Sometimes ableism is easy to actually see with your eyes

10

www.spectrumlife.org

Then, I remember when I was poor with three small children. I learned many things such as there is no good way to handle money when you have none and you cannot hold a job without reliable transportation and child care – both of which cost money you need to first earn to be able to purchase. Today’s Thinking: It’s nice for all kids to have toys and gifts for Christmas. 2) Food drives where you donate specific food used to make up baskets or give money to the organization making the baskets to use in purchasing the food. My Ableist Thinking: Parents should not have more kids than they can feed, but it is not the fault of the children. Those poor kids! I will gladly give to help them. Today’s Thinking: Nobody should have to worry about where the next meal is coming from. In a country with our resources this is wrong. 3) Adopt a family where you purchase gifts from a wish list for each member of a family. Typically clothing sizes are included in the information. Sometimes giving groceries to make a holiday meal is part of the gift. My Ableist Thinking: I wonder how parents get in the situation where they sign their family up to be adopted by a stranger just to get gifts and food. After all, Christmas comes every year. It isn’t like a surprise that catches you off guard. If these people were smart they would have planned ahead for extra expenses of the holidays. Then I was a mom with three small kids leaving a shelter to make my way in the world. Unbeknownst Continued on next page

10


Helping the “Poor and Disabled”, continued from page 10 to me the shelter automatically enrolled us in an adopt-a-family program. I was embarrassed to accept thick, warm, stylish new winter jackets for my kids from the person who adopted my family. I invited the woman delivering the coats inside to warm up. I discovered that she herself went out and bought the coats for my kids. When I asked her what made her decide to do that she simply said, “Everybody in Wisconsin needs a warm coat for the winter.” Today’s Thinking: I am so glad to be part of this world and can pay it forward because the truth is everybody in Wisconsin (where I live) does need a warm coat for the winter.

sometimes drawing out a smoldering anger in others. Will your attitude draw circles of holiday meaningfulness where you include yourself in what already is or will your attitude draw lines that allow you to help those poor and disabled people on the other side? This article was originally published for Ollibean.com and also appears on Aspects of Autism Translated at www.judyendow.com.

Plain and simple; we are all part of something bigger than ourselves.

Our attitudes are like markers used for drawing lines that reflect how we will approach and interact in the big wide world on the other side of our skin. When our attitudes draw circles, making us part of the human race, we are inclusive. When our attitudes draw lines putting any group of people impacted by disability on the other side of that line away from us, we are playing with ableism. This means that the very same actions we muster up when helping the poor and disabled can come from a place of inclusion or from a place of ableism. One attitude shares joy and life, the other crushes with a heavy unworthiness

Sign up for the Community Rewards program by linking your Fred Meyer Rewards Card to Autism Empowerment at www.fredmeyer.com/communityrewards. You can search by our name or by our non-profit number WA330. There is no cost to you! Thank You!

Judy Endow, MSW, LCSW maintains a private practice in Madison, Wisconsin, providing consultation for families, school districts, and other agencies. Besides having autism herself, she is the parent of three grown sons, one of whom is on the autism spectrum. Judy can be reached through her website, www.judyendow.com.

Tax-deductible donation for your car, truck, RV or boat (Running or not) • Picked up free of charge by Donate For Charity • Proceeds go to Autism Empowerment and Spectrum Life Magazine

www.spectrumlife.org

11


lifespan

IN THIS SECTION Karyl Frankiewicz - Miss Native American USA............................... 14 Autism Serves Across the Lifespan............................................................ 16 Holiday Appeal Wish List...............................................................................19

Photo courtesy of Cordell Parker

ALL AGES AND ABILITIES

12


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

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

503-974-6478 | SPARK@ohsu.edu SPARK: Simons Foundation Powering Autism Research for Knowledge ©2018 Simons Foundation SPARK Primary Investigator: Wendy Chung, MD, PhD • Protocol Number: 20151664 • Western Institutional Review Board

13


LIFESPAN

Miss Native American USA An advocate for Autistics and Native Americans alike By Karen Krejcha There is a positive saying among many in the autism community that when youth and adults on the autism spectrum have the opportunity to meet and get to know other autistic people, that they have found other members of their tribe. Spectrum Life Magazine is excited to introduce you to Karyl Frankiewicz, Miss Native American USA 2018-2019. Karyl was crowned the 7th national title holder in August 2018 in Tempe, Arizona and is using her reign to promote autism awareness and autistic acceptance. Here is her story. Hello! Congratulations on your recent win as Miss Native American USA! Please tell our readers a little about yourself.

Photo courtesy of Jeremy Wilson

Siyo! That’s how my people say hello. My name is Karyl Frankiewicz. I am 26 years old and a member of the Eastern Band of Cherokee Indians (EBCI) from Cherokee,

North Carolina. I live in the Birdtown Community and am a member of the Paint Clan. I have a degree in Early Childhood Education and work for the Cherokee Youth Center Boys and Girls Club of America as a Youth Development Professional. I am also a Duyukdv or Right Path Alumni and an ambassador for the EBCI for the Folkmoot celebration. I’ve held the titles as Miss Cherokee 2012-2013 and Miss Indian North Carolina 2014-2015. At what age were you diagnosed on the autism spectrum? Tell us what that was like? I was diagnosed when I was eight years old. I was struggling in school and when I transferred to another school a teacher asked if I had ever been tested and made a request for that to be put in. When I found out that I had Asperger’s syndrome, I was even more nervous that I would be bullied even more. I received training and was given opportunities to build up my skills and confidence in being able to speak in front of crowds. In some cultures, it is more difficult to talk about autism than others, particularly with elders. What is it like where you grew up? Our schools have programs for children with autism. So they can be prepared for the future, they are trained to start a business when they graduate from high school. Our adults have programs to help them out as well. We have a chapter in the Special Olympics just for our enrolled members, with some going on to state-level competition. With the support of our elders and the community, talking about autism has become easier, so today I’m sharing my story with Native communities across the country. Tell us how you first became involved with Native American pageants. I was introduced to pageants by my cousin; she ran for Miss Cherokee and asked me to run for it that following year. Although I didn’t win, I was so enthralled by the Miss Cherokee Pageant that I trained myself even more and won that next year. During my reign, I was introduced to the Miss Indian North Carolina and Miss Native American USA. Were there any autistic traits that you believe helped you during pageant competitions? Were there any that challenged you? If so, how did you overcome those challenges? I had to make cues for myself to perform to the best of my abilities. I did struggle with not moving my body; my hands were the worst but as Native Americans, we use our hands all the time in storytelling. I also had an issue with the lights because I was trained to make eye contact while Continued on next page

14


Miss Native America USA, continued from page 14 speaking. I couldn’t see and that had made me nervous, hoping I was doing enough on stage in engaging the audience. What are the differences and similarities between a Miss Native American USA pageant and a Miss USA pageant? In both pageants, one competes in areas such as Interviews, Evening Gown, Talent, and On-stage questions. In the MNAUSA pageant, however, you can perform a contemporary (what you would see in the Miss America pageant) or a traditional talent. This is a representation of your tribe. Tell us about the clothing and the beautiful feathered cape and headwear you are wearing in the photos you shared with us. My clothing is a representation of what my people wore back in the 1800’s. Our regalia includes a trade shirt, wool wrap skirt and leggings, and center seam pucker toe moccasins. This is what you would see a woman wearing back then. The feather cape has a special meaning, there are different capes and they hold different status. The white cape represents a Beloved, a person that is highly sought out by the tribe. This person preserves knowledge and is willing to help and look after the people. This title I hope I will have bestowed upon me as my aunt Shirley Oswalt had, as I wore it to honor her. The crown and sash were made by Tawnia Littlesalt from Kayenta, Arizona for the MNAUSA Pageant and that’s what I’ll wear throughout my reign and will hand down to the next young lady. Describe what it was like when you were crowned Miss Native American USA. I honestly didn’t think I had won; all the other contestants were wonderful and brought so much to the pageant in their own unique way. I was surprised that I even won “Best Interview.” If you watch the video, I looked at another contestant because she was from the Cherokee Nation of Oklahoma when I heard Cherokee announced. I had to get confirmation to see which Tribe was called before I went up to be crowned. What are the responsibilities and schedule of a Miss Native American USA pageant winner? What kind of activities do you do during your reign? You are required to attend certain events depending on what your platform is and what you do workwise. Like myself, I work with the youth, where my focus lies and teach them of my platform and the importance of keeping our culture and traditions alive. Each contestant and winner has a platform and yours is Autism Awareness. How did that come into play during the competition? Each one of us chose a platform that went into the program and was used throughout the pageant. I incorporated Autism Awareness into my speech which I presented at the pageant, blending my platform into the pageant theme which was “Empowering our Youth.” During my

acceptance speech, I spoke about how I will represent those who don’t have a voice and bring light to those who need it the most. What are your goals and objectives in spreading Autism Awareness and Acceptance during your reign and beyond? My main goal is to share our stories of some of the struggles that we face every day and to give an understanding of what we deal with having autism with those who don’t live with it. With my message, I hope to bring awareness and stop the bullying by those who don’t understand our struggles. I believe if we show what we deal with daily, we can open doors and come together. I will continue to share my message during and after my reign as it is important to have a voice for those who don’t. Describe a meaningful moment that has occurred since the beginning of your reign. It was after my crowning. I was approached by so many people who were thankful that I’m focused on Autism Awareness because so many have family members or even themselves finally being represented through a national title. Even now, messages come to me stating how proud they are of me and just hearing these make my day. What else would you like for Spectrum Life Magazine readers to know? You can keep up with me on the Miss Native American USA Facebook page at www.facebook.com/MNAUSA.pageant. This has been such an amazing experience so far and I’m proud to represent all of you. Hopefully, my story will encourage you to create one just as, if not more, exciting. I’d like to thank you for giving me the opportunity to represent Autistic and Natives alike and hope to be a great ambassador to the best of my abilities. Karen Krejcha is the co-founder of Autism Empowerment where she serves as Executive Director. She is Editor of Spectrum Life Magazine and a vibrant public speaker. Karen was diagnosed on the autism spectrum in her 40s, after the diagnosis of her two sons. She has been married to John for over 26 years and is devoted to promoting a culture of acceptance and empowerment within the autism community and the world at large. www.spectrumlife.org

15


LIFESPAN

Autism Serves Across the Lifespan Ambassadors for Acceptance of All Abilities By Karen Krejcha Autism Serves is a volunteerism movement providing world change, one person at a time. A program of Autism Empowerment, the Autism Serves program brings people of abilities together across the lifespan to volunteer. Each volunteer is an Ambassador for Acceptance of All Abilities. We embrace each person’s unique combination of skills, gifts, and talents and utilize that individuality to promote peace, kindness, respect, inclusion, advocacy, autism acceptance and positive societal change. We’ve shared benefits of Autism Serves volunteerism before in 2014 and 2016:

Autism Serves - Changing the World through Volunteerism

Learning through Volunteering with the Autism Serves Kids Care Club www.spectrumlife.org/summer2016 As we head into the holiday season of 2018 and prepare for a new 2019, we wanted to do something different with this piece. With the help of our talented graphic designer Dave Born, we have created a photo collage of some of our favorite volunteer highlights over the past four years. We hope it will encourage, inspire, and empower you to be part of our movement and to support Autism Empowerment, Spectrum Life Magazine and Autism Serves in the years ahead. Enjoy!

www.spectrumlife.org/2014issues (Summer 2014)

16

www.spectrumlife.org

16


WE ARE FAMILY www.spectrumlife.org

17


Accept Enrich Inspire Empower 18

www.spectrumlife.org www.spectrumsmagazine.org

18


Autism Serves, continued from page 16

Would you, a friend or family member like to be an Ambassador for Acceptance of All Abilities? Email: autismserves@autismempowerment.org for more information. We have programs for adults and youth, in-person or home-based that support Autism Empowerment programs and Spectrum Life Magazine. We look forward to hearing from you!

We also need fundraising support! Our wish list this holiday season is simple: • To keep Spectrum Life Magazine a free publication for the autism community for 2019, we need to raise $150,000 to pay for writing, design, printing, and distribution. • To serve youth, adults, and families in the autism community through Autism Empowerment’s volunteerism program, support groups, social clubs, and special events for 2019, we need to raise $100,000. • If you or someone you know (a friend, family member, business, agency or angel philanthropist) would like to help us reach our $250,000 goal, every dollar counts and is important. Contact Karen Krejcha at: donations@autismempowerment.org or visit: www.autismempowerment.org/donate today! Thank you for your kindness and generosity!

19


recreation INCLUSIVE WAYS TO HAVE FUN

IN THIS SECTION A New Joel Suzuki Novel, Just In Time....................................... 22 Kazoodles Toy Store............................................................................... 24

20


guiding those who may not know the way, assist with challenges where we can, finding joy in the middle of it all.

9414 NE Fourth Plain Rd., Vancouver, WA 98662 360-823-2247 www.peacenw.org

www.spectrumlife.org

21


RECREATION

A New Joel Suzuki Novel, Just In Time! May the Fourth Book be with you. By Karen Krejcha Author and musician Brian Tashima is launching Fable of the Fatewave, the fourth book of the Joel Suzuki series this winter, just in time for the holidays. For those of you who may not be familiar, the Joel Suzuki series is a set of young adult science fiction/fantasy novels about two teenagers on the spectrum who travel to a world where music is magic and autism is a superpower. Spectrum Life Magazine sat down with Brian to get the scoop on his new book.

Do you ever wish you could go back and change anything in an early book? You know, that’s one of the great things about independent publishing—if I wanted to change something in a previous book, I totally could, no problem! But no, other than a re-editing of the first book that didn’t change the story in any way and, of course, the rebranding from the Spectraland Saga to the Joel Suzuki series, I have no desire to alter anything else. I’ve re-read each of the previous books numerous times and I’m happy with them just the way they are. How has your writing process evolved since the first book? If anything, I’ve gotten more efficient, which I’ve had to since I now have less time to write than before. I’ve developed effective techniques that get me into the “writing zone” quicker so that I’m not wasting time staring at a blank page. Can you share some of these techniques?

The latest volume in the Joel Suzuki series not only features characters on the autism spectrum, but from the LGBTQ community as well. It has been over a year and a half since we last interviewed you. Time sure flies! It really does. Although, the original planned launch date for Volume Four of the Joel Suzuki series was later in 2019, so I’m actually ahead of schedule. Not quite sure how that happened. Time travel magic, maybe. You have now written four books in the Joel Suzuki series. Which is your favorite, and why? This is the question that you always hear people answer with some form of “that’s like asking me to choose which one of my kids I like the best.” And I certainly won’t be an exception! Honestly, I love them all. But I will say that I do like each of them for different reasons. The first book, Secret of the Songshell, will always be special to me because, of course, that’s how it all began. The second one, Mystery of the Moonfire, was challenging to write, but I actually like it because of that fact. I also think it challenges the reader because the structure is a little unconventional and it introduces a lot more characters and situations into Joel’s world. The third one, Legend of the Loudstone, was just a blast, especially since it took Joel and company to a completely different setting. And the fourth one, which is the longest installment in the series so far, is a major turning point where the story starts to turn dark and the stakes become much higher. From here on in, it’s a wild roller coaster ride to the finish.

22

One of the most effective ones is what I call the “Mall Scene.” This is when I write my characters doing absolutely anything, even if it’s completely unrelated to the actual plot. For example, if I left off with Joel and his co-star Felicity battling giant zebra-lizards but now I’m not sure where to go with it, I’ll have them suddenly appear at the local mall to shop for shoes. It’s an exercise that gets me writing, which is good because, usually, the hardest part is getting started. Then, once I’m back in the groove, I can always delete the Mall Scene and pick up where I left off, or I can save it for possible future repurposing. Believe it or not, I’ve actually gotten some useable material out of this exercise. Another technique that’s been helpful is listening to epicsounding instrumental music while I write. I can’t write to songs that have vocals in them because I get distracted by the lyrics, but soundtrack-type instrumentals always make me feel like I’m watching a movie, which, as you can imagine, helps with writing a sci-fi or fantasy series with a cinematic feel. Do you already have an outline for the next book in the series? How far do you plan out? I have a basic outline and I know where I want the story to go, but this time around I’m mostly winging it, or “pantsing” as they call it in the author community—that is, writing by the seat of my pants. It’s how Stephen King does it. I tried pantsing before with the second book and it didn’t quite work out, but now that I have more experience I wanted to give it another shot. There’s always a chance I might have to start over again with a fuller outline, but that makes it exciting! Continued on next page

www.spectrumlife.org www.spectrumsmagazine.org

22


A New Joel Suzuki Novel, continued from page 22 What are the most difficult challenges about self-publishing? Even though there isn’t as much of a stigma attached to self-publishing as there used to be, you still have to work to overcome the perception that your books aren’t of the same quality level as those from traditional publishers. Also, you usually have to take on a lot of non-writing tasks yourself— everything from sales to accounting to publicity. Fortunately for me, I enjoy most of those tasks, and the ones I don’t enjoy or can’t perform with an acceptable level of proficiency, I’m able to contract out to other professionals who do a great job. How can Spectrum Life readers help promote your books to others both within the autism community and the world at large? If you’ve read the books and enjoyed them, please recommend them to any of your friends and relatives that you think may enjoy them as well, because word of mouth is always the best way to promote books. Also, leave online reviews at Amazon, Goodreads, and Barnes & Noble, and sign up for the Wavemaker Order—the Joel Suzuki series fan club—at www.joelsuzuki.com/join.html. Tell us a little about what happens in the fourth book, Fable of the Fatewave. Well, at the beginning of the story, Joel discovers that he’s destined to become the most powerful Wavemaker— someone who can make magic with music—ever to live, which includes gaining the ability to travel through time and space. He just needs to train with a Master Wavemaker to make sure he stays on the right path. The problem is, shortly after Joel’s training begins, Spectraland—the island home of the Wavemakers—is attacked, and the Master Wavemaker is fatally injured. So now, Joel has to use his new powers to travel back in time to prevent the attack from ever happening in the first place. The problem is that he’s not very good at it yet, so of course, all kinds of fun stuff happens from there. Also, one thing that I particularly like about this latest volume is that there are a number of openly LGBTQ characters who play significant roles in the story. Some of these characters have appeared in previous volumes, while others are new. Representation and diversity in popular media is something that’s very important to me, so I tried hard to make sure these characters appeared not just as tokens, but as fully-fleshed, three-dimensional people. I’m happy I made the decision to include them, as I have a number of friends, associates, and family members who identify as being part of that community—in fact, one of them was a sensitivity reader for this book, making sure that my representations were accurate and respectful. If you could time travel with Joel Suzuki, where would you want to go? Oh, there are so many choices. However, as anyone who has seen a movie or a TV show or read a book that has a time travel plot knows, traveling through time usually has a lot of unexpected and sometimes undesirable consequences. It can be a tricky beast. So, honestly, I’d probably have to just tell Joel that I’m good with staying right here, in the present.

If he insists, though, I would have to say the 2012 farewell concert for a band called Stereopony, which is something I wrote about in my blog: briantashima.blogspot.com/2018/09/ joel-and-felicity-discover-stereopony.html. Speaking of your blog, I’ve been reading it and I happened to notice that in addition to the Joel Suzuki series, you’re also now writing screenplays and teleplays. Do you plan for any of your other writings to include autistic characters? I do! In fact, one of my completed screenplays has an autistic character who, although he’s not the main protagonist, still ends up playing a major part in the story. I can’t say much more because it would be a spoiler if the script ever gets produced, but I’m really happy with the way it turned out. There’s even a little connection to Joel Suzuki hidden in a few Easter eggs. The cool thing about my various projects is that they all exist within the same continuity, like a shared universe, even if on the surface they have nothing to do with each other. That sounds fun! Do you make cameo appearances, like how Stan Lee did in the Marvel Cinematic Universe movies? Sort of—actually, my band, Second Player Score (www.secondplayerscore.com) either makes a cameo or is name-dropped in mostly everything. We’re the connecting tissue. Where can readers find your books? The best place to start is my website at www.joelsuzuki.com. It has links to various online retailers as well as brick-andmortar bookstores in the Pacific Northwest area that carry the series. Or, they can attend one of the upcoming launch parties for Volume Four and get their books signed by me in person! Information on the parties can be found on my Facebook page at www.facebook.com/JoelSuzukiSeries. Thanks so much, Brian. Will we be talking to you in another year and a half about Volume Five? Probably, unless Joel performs some more time travel magic and pushes up the launch date once again! www.spectrumlife.org

23


RECREATION

Kid-powered toys for kids birth to 108! By John Krejcha When our family first moved to Vancouver, Washington in 2007, the area was new to us. Soon our oldest son was invited to a birthday party for another child on the autism spectrum and we wanted to find just the right gift. While exploring our new city, we came across Kazoodles. Their toy selection and hospitality were amazing. Recently Spectrum Life Magazine spoke with Kazoodles Toy Store owners and founders, Mary and Bob Sisson, as well as store manager Leah Pickering to learn more about their connection to our community and why Kazoodles has been so successful.

Mary, tell us about Kazoodles and what motivated you to open a toy store. Kazoodles is Vancouver’s only independent toy store. It’s a mom and pop business -- I’m mom, and my husband, Bob, is pop. We opened in 2006. I had worked in the public information office for Vancouver Public Schools until they dropped my position during a round of budget cuts. Driving up I-5 one December day, Bob and I were talking about how we needed to go to Portland to get toys for our grandchildren for Christmas, and too bad Vancouver didn’t have a toy store. And then — maybe we could open one! The ideas poured out all the way up I-5. With no business background, we took a class at Clark College, joined the American Specialty Toy Retailing Association (ASTRA), visited more than 30 toy stores from California to New Hampshire, and talked to as many owners as were willing. We loved the magic of Toy Bear in Gresham, and its owner was willing to share with us and became a friend. Vancouver had a wonderful teacher learning store (now closed), but we wanted to bring that magic of a familyrun toy store to our community. We like to say that we have toys for kids from birth to 108, since Snap Circuits’ packages age guidelines say “8-108.” Play is important no matter what your age. It’s how babies learn. It’s how kids explore the world around them. Play brings families together and lets adults destress. And for kids working on whatever challenges they face, play makes that a whole lot more fun.

names.” She suggested the name and designed our logo for a class project. Of course we carry kazoos with our logo on them!

Kazoodles carries many items that support children with special learning and sensory needs. Was this planned from the beginning? As we were making plans for Kazoodles, it hit me one day that we could serve the community of kids with special needs. I learned that ASTRA had worked with a toy store in Olympia and the Washington Elks Children’s Therapy Program to test toys with kids with a variety of special needs, and they’d put together a huge notebook of evaluations and recommendations. Not only that, but there was an online resource where you could plug in the age of the child and what the child was working on, and you’d get a list of recommended toys. Sadly, that program went away years ago, but it gave us a start in learning how best to serve that part of the community. Since then, various other guides have come out to help families choose toys, and I’ve taken workshops at the ASTRA convention every summer, but most of all we’ve learned from our customers. We had a sensory section long before fidget spinners made fidget toys hot. One day I was ordering Boinks fidgets, and this kid walked in with one attached to his belt with something he’d rigged up. I showed him the Boinks fidgets on a carabiner and asked him his opinion. Of course we ordered them! Another time, a grandma was looking for a toy for her grandson on the autism spectrum. We showed her everything we could think of, and he had so many sensory issues, there was something about each of them that just wouldn’t work. Then a customer, who’d been following this whole conversation, asked her 10-year-old daughter to demonstrate the Bilibo, a shell-shaped plastic toy you can sit in and rock, spin or whatever the child can think of. The grandma bought one and it ended up being the perfect gift.

How did you come up with the name Kazoodles?

Kazoodles has a wide selection of amazing learning games and toys you don’t find in a typical box store. How do you decide what inventory to include to make sure your store meets a wide range of needs?

When we first got this idea, our daughter was going to art college and working in a little toy store. She was studying branding and marketing and said, “Kids like funny-sounding

Customers have told us they appreciate our carefully curated collection. We don’t look for the most heavily advertised toys. We look for great play value. A toy should last through

24

Continued on next page www.spectrumlife.org www.spectrumsmagazine.org

24


Kazoodles Toy Store, continued from page 24

several stages of development, and be of good quality so it lasts through several kids. We want kids to engage in real play. That means toys that require kids to use their creativity, brains, imagination, muscles and natural curiosity. And we definitely look for toys that meet a wide range of needs. Often we have certain customers in mind as we go to a toy show and search for toys that will help with fine motor or communication or social skills or focus, for example.

Collaborative special events and book signings have been a big part of what Kazoodles is known for. What have been some of your favorites?

We have many times gone to Toy Fair in New York City, a huge toy show, to see what’s new. But the show where we find the best toys is our ASTRA convention because it’s there we discover the small companies that are really innovative.

We love to give local people a chance to share their talents with our customers. Brian Tashima is a good example. Every time he’s launched a new book in his Joel Suzuki series, we’ve had an event at Kazoodles. I hope those books are made into a movie sometime, because his writing is so visual! We’ve had other local author visits, and last June we had the album launch party for Ants, Ants, Ants, a local music group with really fun kids’ music.

Why do you think Kazoodles has been so successful in an age of big box stores and online shopping?

People can sign up for our loyalty program and give us their email address to find out about what’s coming up. We also post on Facebook and Instagram a lot, and we keep a calendar on our website, kazoodlestoys.com.

If there’s anything you can’t get at a big box store, it’s the knowledge of kids, play and how to match the toy to the child. I’ve completed Certified Play Expert training through ASTRA and have passed a lot of that on to my staff. I’ve also learned a lot from my staff and customers and their experiences. Our goal is to find out about the child and help the customer find just the right toy.

Please share one or two favorite stories about customers you ’ ve served.

If there’s anything you can’t get online, it’s the experience. When you walk into Kazoodles (or any independent toy store) you know you’re in a magical place. Kids can play with a lot of the toys to try them out. Grownups remember their childhood. We have a game lending library so customers can play before they invest in a game. We try our best to give everyone a friendly greeting, help them as much as they want to be helped, and then we gift wrap for free once they’ve chosen their gift. Plus, we have lots of events, from Crafternoon to live lizard visits to kids’ financial workshops with iQ Credit Union to big celebrations like Neighborhood Toy Store Day in November and our store anniversary in March.

One customer who’s blind has been shopping with us since she was an infant (and so was the store). Last year when family members started coming in for her birthday, we realized they were buying things for the same girl so we started keeping a list so no one would duplicate. A former employee, Mr. Duane, is also a great puppeteer. He enjoyed talking with kids through his puppets, especially his own dog puppet named Sally. One day Sally started chatting with a little girl about three or four-years-old at the train table. Soon the little girl started shouting, “Doggy! Doggy! Mommy, doggy!” Her parents came running, and Duane was afraid he’d scared her. It turned out she had autism, and those were the first words she’d ever spoken. Everyone was in tears that day. Continued on page 27 www.spectrumlife.org

25


See Beyond Behavior™ Behind every behavior is a purpose. BEHCAŽ is designed to help families, educators, and support providers discover the underlying causes of behavior. Track daily observations, identify emotional triggers, and use shared data insights to effectively manage behavior over time.

Learn more and sign up for a free 14-day trial at behca.com

#SeeBeyondBehavior

Spectrum Life 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 spectrumlife@autismempowement.org or call (360) 852-8369

www.spectrumLife.org 26

www.spectrumlife.org www.spectrumsmagazine.org

26


Kazoodles Toy Store, continued from page 25 Another toy we see kids clambering for is the Bruder UPS truck. The kids of Vancouver want to wear shorts to work and drive with open doors! Other favorites include: Liquid Floor Tiles, Wildlife Wow, Just Add kits, Geopuzzles and Chickapig. Come see us for more!

Those sound toy-riffic! How can Spectrum Life Magazine readers visit and connect? Kazoodles is located in Cascade Park at 13503 SE Mill Plain Blvd. #B-3, Vancouver, WA 98684. Our phone number is: 360-823-0123. Although we don’t sell online, we invite you to kazoodlestoys.com where we blog and share our special events calendar. We’re also on Facebook: facebook.com/ KazoodlesToys and Instagram @kazoodlestoys.

Do you or any of your staff have a personal connection with someone on the autism spectrum, with other disabilities or other special health needs? (Store manager Leah Pickering responded to this question.) I have several members of my family who are on the autism spectrum, a sibling who had several medical complications at birth that contributed to his lifelong developmental issues, as well as a child with sensory processing issues, dyslexia and idiopathic fine motor delay. To me, the truth about a “scary” diagnosis like ASD is that, in reality, nothing changes. You’re still dealing with all the same things you faced the day before diagnosis only now you have help and support and, in a way, peace of mind.

Leah, what are some of your toy and game gift idea recommendations for the upcoming holiday season? I could recommend toys for DAYS! Of course, everything in our 2018 ASTRA Best Toys for Kids flyer is excellent. We have plenty in-house for anyone wanting to check it out. Texture and squishy are hot this year. A few sensory style gems that come to mind are the new Bubbleezz and Odditeez from Orb Factory. The Bubbleez are these cute clear creatures filled with water marbles. Each style is squeezable and contains three secret charms to find as squish and squeeze. The Odditeez is a ball filled with glitter slime and makes a great item to stick in that tricky stocking toe!

Swashbuckling John “Dubloons” Krejcha is co-founder of Autism Empowerment and serves as Program Director where he oversees Community Outreach. He also serves on the Editorial Advisory Board of Spectrum Life Magazine. John is married to Autism Empowerment co-founder, Karen Krejcha and is the father of two amazing sons, Justin and Ryan. While John is the only one in his family who is not on the autism spectrum, he is also neurodiverse.

My favorite new item in our plush department is the weighted animals by Manimo. They have shiny fabric and come in 1 lb., 2.5 lb. and 5 lb. weights. We also have some smart new craft kits from Ann Williams themed with llamas, unicorns and mermaids. There are two kits that feature wizards and fairies that require you to solve mysteries by crafting. In the end, you earn some magical friends and a few secret treasures.

27

www.spectrumsmagazine.org

www.spectrumlife.org

27


education KNOWLEDGE TO EMPOWER FAMILIES AND INDIVIDUALS

IN THIS SECTION The ABCs of LRE ..................................................................................... 30 Overcoming Deficits in Executive Functioning ...................... 32

28

www.spectrumlife.org

28


SPECTRUM LIFE MAGAZINE READER SURVEY & CONTEST We’d love to get your feedback on our WINTER 2018 issue! What did you like about this issue? • Which articles did you read? How can we improve? Answer our quick online survey by February 1st, 2019 and be entered to win a surprise package worth over $100! https://www.surveymonkey.com/r/SLMWinter2018

www.spectrumlife.org

29


EDUCATION

The ABCs of LRE Least Restrictive Environment and Placement Decisions By Diane Wiscarson and Taylar Vajda, Wiscarson Law As every parent of a child with special needs knows, navigating the world of special education is challenging, at best. Placement decisions can be especially difficult. Where your child is placed plays a big role in where he or she spends their time at school, and how services are provided. How do you know where your child should be placed? What are your legal rights in this

individualized and based on a student’s IEP. For instance, is the child making progress on his or her IEP goals? Satisfactorily educated doesn’t just mean academic success; students who may not benefit academically can still be a part of the regular educational setting.

decision-making process? All students are legally entitled to be placed in the “least restrictive environment” (LRE) in which they can be successful. LRE is a core component of your child’s Individualized Education Program (IEP), and a critical building block for creating an appropriate and effective IEP.

Inclusion in general education looks at whether the student’s IEP goals and/or objectives can be met in the classroom with accommodations and/or modifications. Special education students can have substantial modifications or accommodations in order to benefit from placement in a general education classroom.

C B A

What is the “least restrictive environment”? Federal law requires that every student receive their education, to the maximum extent appropriate, with their nondisabled peers. This means that a child should be in general education settings at school, unless there is a valid reason suggesting otherwise. Special education students shouldn’t be removed from “regular” classes unless they can’t learn satisfactorily, even with accommodations and/or modifications, in those classrooms. LRE requires educating students with disabilities in general education settings if at all possible, for the entire school day. What is a “regular educational environment”? The term “regular education” and “general education” can be used interchangeably. The “regular educational environment” is a broad term encompassing all general education classrooms and other settings (such as the school bus, lunch, recess, library, etc.). All settings in which nondisabled peers participate are considered to be a part of the “regular educational environment.” An example of something that wouldn’t be “regular” would be a resource room or speech therapist’s office, for instance. How do we know if a student is learning “satisfactorily”? The Individuals with Disabilities Education Act (IDEA) doesn’t have a specific standard for “achieved satisfactorily.” It is highly

30

www.spectrumlife.org

Of course, students with IEPs can benefit from being educated in a general education setting. A child who may learn differently, or benefit differently, cannot be excluded simply because he or she does not receive the same “academic” benefit. Social interaction, for instance, could be an important goal in a regular classroom. In this context, “benefitting” is a broad term meaning more than just academics. What are “supplementary aids and services”? Schools must provide supplementary aids and services that allow students to succeed. A supplementary aid or service is either an accommodation or a modification. A modification or accommodation is a support that is provided in regular education classes, education-related settings, extracurricular settings and nonacademic settings. The support should be designed to help students be educated with typical children to the maximum extent appropriate. Some examples include: extra time, slower-paced instruction, physical adaptations, providing note-takers, and allowing sensory breaks. What if the aids or services are expensive? This should not be a factor in the decision. Schools are required to provide accommodations for a student’s special education needs. Schools must also take steps to include students with disabilities in general educational settings. Schools can’t make

Continued on next page 30


The ABCs of LRE, continued from page 30 “mere token gestures” to include students. Schools have broad requirements for either modifying or supplementing general education so that it works for all students. Cost can’t be used to deny needed and/or required services. The only time cost can be used to deny services is if it is so expensive that it would significantly impact the education of many other students. My child’s behavior is disruptive. Does the district need to try a regular education classroom first? Yes! Federal laws require the IEP team to consider behavior intervention strategies for students with disabilities whose behavior is disruptive. Before a district decides that a student’s behavior is so disruptive that he or she would significantly impair other students’ education, the school needs to try other strategies. This must be done before moving a child to a more restrictive environment. A behavior intervention plan,

a child might spend much of their day in a special education classroom, but eat lunch or have recess with their typical peers. Do parents have a voice in this process? Absolutely. Parents are to be equal members of the IEP team. Unlike other members of the IEP team, you are an expert about your child. You will likely have a better understanding of your child’s needs or capabilities than anyone at the school. You have a right to participate in all of your child’s IEP meetings. That includes decisions about your child’s participation in both general and special education settings, including where and when your child will be in each of those settings. Speak up on behalf of your child to have input into the LRE decision.

E LR

What if I disagree with the LRE decision made by the school?

for instance, might have different strategies for a student to effectively regulate his or her emotions, and thus eliminate behaviors that might have been disruptive.

Does the district still have LRE requirements if my child is not placed in a regular classroom? Yes. Sometimes, general education settings simply aren’t the best fit for a child. In that case, a child might be better served in a different educational setting. Other settings might include instruction in special classes, special schools, home instruction, or instruction in hospitals or institutions. Each decision must be made based on a child’s IEP, not their special education eligibility category or the severity of a disability. These decisions are individualized and not based on single factors or broad generalities.

If you disagree with the amount of time that your child will spend in general education, special education, or both, you have a few options. You could request mediation with the district, you could file a due process complaint, or you could file a complaint with the appropriate education department in your state. In Oregon, this would be the Oregon Department of Education. In Washington, this would be the Office of Superintendent of Public Instruction. While this dispute is being resolved, your child may be able to remain in his or her current placement under a “stay-put” order. However, all of these processes vary greatly in time, cost, and available outcomes. An attorney may be able to help you work through the legal intricacies, and suggest the best option for your family.

However, even if some or all instruction will be in a different setting, the school still needs to find ways to maximize opportunities for the student to interact with peers without disabilities, to the extent appropriate for that child. For instance,

Wiscarson Law was founded in 2001 by Diane Wiscarson, who earned her J.D. at Lewis & Clark Law School in 1996. Wiscarson Law has since shepherded thousands of Oregon and Washington families through the region’s public schools and educational service districts on behalf of their special needs children. Taylar Vajda is currently a clerk with Wiscarson Law and is pursuing her J.D. at the University of Oregon School of Law. For more information call 503.727.0202, or go to wiscarsonlawpc.com.

www.spectrumlife.org

31


EDUCATION

Overcoming Deficits in Executive Functioning: Empowering Students to Stay Organized With Google Classroom By Aaron Blackwelder

According to WebMD, “Executive function is a set of mental skills that help you get things done.” They go on to suggest that it is divided into two separate groups:

due Thursday.” Google Classroom has allowed me to trust my children, but confirm what they say.

• Organization: Gathering information and structuring it for evaluation • Regulation: Taking stock of your surroundings and changing behavior in response to it This means executive functioning assists us in: • Managing time • Paying attention • Changing focus • Planning and organizing • Remembering things Quite often, autistic children struggle with executive functioning. And since academic success relies on one’s ability to use his or her executive functioning, autistic students often struggle in school. Therefore, parents and teachers need to offer tools which will help autistic students achieve success. Over the past couple of years, I have been using Google Classroom with my students. As a general education, high school English teacher, I like it because it allows me to have one simple space I can share files and work with my students. I also appreciate its simple interface that integrates with Google Docs, Google Slides, and Google Sheets. I can organize work by units. I can keep track of student progress. I can monitor students’ work. I can message both students and parents. I can make class announcements. As a teacher, it allows me to be more clear in my instruction and make learning available for my students wherever and whenever. However, this school year I am beginning to see the power of Google Classroom from a parent’s perspective as both of my children’s schools have implemented. As a parent, I appreciate that it allows me to have a glimpse into my children’s daily lives and allows me to help them be successful. Google Classroom also helps to answer the question, “Do you have any homework or projects to work on tonight?” When I get the proverbial, “No, I finished it in school today,” I follow it up with, “Great, why don’t you show me your “To-do” list” or “Humm, I got an email update saying you are missing a project that was

To-do One of the most powerful features of Google Classroom is its ability to organize for the student. When the child is logged into his/her account they will see a three bar menu on the top left-hand side of Google Classroom. This will open up a sidebar that lists all enrolled classes along with “To-do” and “Calendar”. The “To-do” list is very powerful. When students click on their “To-do” it opens up a list of all assignments that need to be completed. Each night, I have my boys click on this and show me that they are caught up on their work. It shows work that is either Missing or Upcoming. Missing means that the student has missed the deadline to turn in while Upcoming are assignments that are due in the future. Using this allows me to help my children manage their time, plan and organize. While on this screen, the user can click on any item and be taken to the assignment. This allows the child to access the instructions, any resources posted by the teacher, and turn in the work.

Calendar The calendar is similar to the “To-do” list, however, it displays daily assignments for all classes for each day Continued on next page

32

www.spectrumlife.org www.spectrumsmagazine.org


Overcoming Deficits, continued from page 32

throughout the week. There buttons on the calendar allow previous and future to be displayed. This be printed and posted a visual reminder of assignments are due.

are that weeks can as what

As with the “To-do” list, can be clicked on and student is taken directly the assignment in to complete the work.

items the to order

Parent Emails One of my favorite functions Google Classroom is weekly emails. This is something parents will want to ask their child’s teacher to turn on.

metro and Southwest Washington area currently use it. These districts support teachers with training in order for them to use it effectively. Besides this, there are tons of free resources to help teachers learn how to use Google Classroom more effectively. There are several Youtube channels and experts on Facebook and Twitter who help support teachers. Some districts use alternatives, such as Apple Classroom and Schoology, which have similar features. When talking to your child’s teacher ask them what platform their district offers and how it might compare to Google Classroom. References: • Smitha Bhandari, MD. “What Is Executive Function?” WebMD. May 01, 2017

of the

The Parent Emails are sent every Friday evening. The email will include a list, by class, of all the assignments that are missing and due. Now, parents do not have access to the child’s work, but this is helpful as it communicates to parents what is due and allows the parent to ask their child questions about the assignments. Besides using the emails to help my children stay on top of their assignments, I also like to use these emails as conversation starters. When my children have an assignment due next Wednesday I like to ask them, “So, how is your English project coming along? What are you learning about?” or “I see you have a test coming up this week. I’d love to help you prepare for it.” or “I noticed you did a really good job on your science lab. That’s awesome! Would you like to tell me about it?” Because school takes about half of a child’s waking day, it is important for us as parents to not only help them be successful but to encourage them when they are successful and promote the joy of learning. So, be sure to be intentional to use the emails you receive to discuss positive aspects of school and not just missing assignments.

Aaron reached out to school districts throughout the Southwest Washington and Portland metro area to find out which ones use Google Classroom. As of press time, these are the districts he heard back from. If your district is not on this list, please check with them directly and visit www.spectrumlife.org for updates. Uses Google Classroom: Battle Ground Public Schools - www.battlegroundps.org Beaverton School District - www.beaverton.k12.or.us Camas School District - www.camas.wednet.edu Evergreen Public Schools - www.evergreenps.org La Center School District - www.lacenterschools.org Longview Public Schools - https://longviewschools.com North Clackamas Schools - www.nclack.k12.or.us Parkrose School District - www.parkrose.k12.or.us Portland Public Schools - www.pps.net Ridgefield School District - www.ridgefieldsd.org Washougal Public Schools - www.washougal.k12.wa.us Woodland Public Schools - www.woodlandschools.org Uses an alternative: Hockinson School District - www.hocksd.org Vancouver Public Schools - https://vansd.org

Aaron Blackwelder is a high school English teacher at Woodland High School in Woodland, WA. He is married and the father of two boys with autism who have shaped him as an educator. He is passionate about creating learning environments for all students. In his free time, he writes his blog, “Thinking 101” where he shares his ideas about education. He is not affiliated with or paid by Google or Google Classroom in any way. Visit mrblackwelder.wordpress.com.

Photo courtesy of Bell Studios

Conclusion: Google Classroom is growing in popularity among teachers and school districts. Many districts around the Portland

www.spectrumlife.org

33


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

IN THIS SECTION Spectrum Life Resource Directory................................................35 Ask Spectrum Life ..............................................................................36 Fear, Anxiety and Autistic “Behavior” .......................................38 Ask The Personal Trainer..................................................................40

34


SPECTRUM LIFE

resource directory

www.spectrumlife.org

Spectrum Life Magazine serves youth, adults, and families in the autism community. We seek to partner with nonprofit organizations, businesses, support groups, educators and professionals from a variety of fields who desire to support our community in a meaningful way. If you are an autism-friendly provider who desires to connect with new clients, we can help you make those connections through directory listings, advertising and sponsorship opportunities. Please contact John Krejcha, Program Director at spectrumlife@autismempowerment.org or call (360) 852-8369. Spectrum Life Magazine and Autism Empowerment do not endorse, promote or guarantee the services or outcome of any one provider or type of therapy.

We currently list over 1,200 autism-friendly service providers from Oregon, Washington and throughout the United States. Some of the directory categories where you are able to search for providers in your region include: Adult Services Advocacy Assessment and Diagnosis Autism-Friendly Businesses Camps Caregiving Chiropractic Dentists Educational Support Employment Assistance Financial Planning Government Agencies Housing Legal Medical Professionals Psychiatrists/Psychologists Recreation Safety Schools Special Needs Trusts Sports and Fitness Support Groups Therapy and Interventions Transportation Travel The SpectrumLife.org website launched in March 2018 and is a continual work in progress. In order for our directory to become stronger and better known, we invite community members to share this valuable resource with their colleagues, friends and family members. Let’s work together to build our community stronger! Thank you for your support! To learn more about our Spectrum Life Resource Directory, please visit and bookmark www.SpectrumLife.org. If you have a resource you’d like to see added, please contact us at spectrumlife@autismempowerment.org or through our website. www.spectrumlife.org

35


HEALTH + WELLNESS

Ask Spectrum Life Autism Resources for our Community

Each issue, Spectrum Life Editor and content curator, Karen Krejcha answers frequently asked questions about autism-related resources across the lifespan for our community. Dear Spectrum Life: Do you know of any Sensory Santa or holiday-themed events taking place for our community this December? ~ Signed, Claus-trophobic Dear Claus-trophobic, As of the time we went to press in November, we had heard of a few to get you started. Please double-check with each host to confirm details on dates and times. Saturday, December 1st - FACT Oregon is having a holiday party with Santa from 8:00 am to 10:00 a.m. at the Portland Children’s Museum, 4015 SW Canyon Rd. Portland, OR 97221 Join us at the Portland Children’s Museum while the museum will be open especially for FACT families! The exhibits will be sensory friendly, Santa will be roaming the museum with Mrs. Claus taking photos and visiting with children and there will be milk, cookies and other goodies. This event is FREE and open to FACT families and friends. You are welcome to stay and play after 10:00 am as long as your family would like to! Please note there is a charge for parking. Register online at: http://bit.ly/factoregon2018 Saturday, December 1st - Vancouver Autism Moms Sensitive Santa event is from 10:00 a.m. - Noon at Stephen’s Place, 501 SE Ellsworth Road, Vancouver, WA 98684. All special needs families are invited to come see our very special Sensitive Santa and get their picture taken for FREE! An RSVP is appreciated but not required. Email Melissa

36

Dodge at melissad722@msn.com or call 360-601-0492. Free picture courtesy of Fraley Photography. Saturday, December 1st - Special Celebrations 4th Annual Sensitive Santa Workshop is being hosted in partnership with Stephen’s Place from 2:00 p.m. - 4:00 p.m. at Stephen’s Place, 501 SE Ellsworth Road, Vancouver, WA 98684. Festivities include crafts, treats and photo booth fun. Each guest will receive a stocking from Santa and a photo to keep. Bring your cameras because special guests are also coming! RSVP to Theresa Van Pelt at 360-433-1235 or email: specialcelebrations@outlook.com. Visit Special Celebrations at Facebook for more events. Sunday, December 2nd - Centria Autism Services is hosting a free Sensory Friendly Santa event from 8:00 a.m. - 10:00 a.m. at Washington Square Mall, 585 SW Washington Square, Portland, OR 97233. Sensory Friendly Santa will be trained to avoid loud noises and sudden movements, and will ask direct questions instead of open-ended questions. The winter wonderland setting will be adjusted so that there are no loud noises or flashing lights. Register in advance through Eventbrite at: http://bit.ly/sensorysantapdx2018. For questions, contact Nicole Mulvihill at events@centriahealthcare.com. Sunday, December 9th - Vancouver Mall is hosting Santa Cares from 9:00 a.m. - 11:00 a.m. at Vancouver Mall, 8700 N.E. Vancouver Mall Drive, Vancouver, WA 98662. Children within every spectrum of special needs and their families are invited to a private photo session to experience the time-honored tradition of a visit with Santa Claus during dedicated hours. Hosted in partnership with Continued on next page

www.spectrumlife.org

www.spectrumlife.org

36


Ask Spectrum Life, continued from page 36 Autism Speaks. Register in advance through Eventbrite at: http://bit.ly/santacares2018. For questions, contact Bree Sanchez at bsanchez@centennialrec.com. Saturday, December 15th - Special Celebrations is hosting a “Cocoa with Santa” community outing from 10:00 a.m. - Noon at Joe’s Place Farms, 701 NE 112th Ave, Vancouver, WA 98684. Come shop the farm store, enjoy a hot cocoa and visit with Santa and friends! No RSVP required, but helpful. For more information contact Theresa Van Pelt at specialcelebrations@outlook.com or call/text 360-433-1235. Please check www.spectrumlife.org and our Spectrum Life Facebook page at www.facebook.com/spectrumlifemagazine for additional updates. If you know of any we don’t have listed, please email them to us at spectrumlife@autismempowerment.org.

Dear Spectrum Life: I just learned about your magazine this year and love how autistic-friendly you are! Do you do subscriptions or sell back issues as stocking stuffers for people out of the local area? Also, what are holiday-themed articles I can share with family and friends traveling into town to help them understand my child? ~ Signed, Magazine Worm Dear Magazine Worm, Spectrum Life Magazine (formerly Spectrums Magazine from 2013-2017) has published six quarterly winter editions and in most years, there was at least one article that was geared toward providing support to autistic youth, adults and families during the holiday season. The great news is that all of these issues are available for you, family or friends to read online for free at the SpectrumLife.org website either in magazine-style format or in blog article format. All past issues can be found at: www.spectrumlife.org/pastissues We do offer mailed reader subscriptions for $20.00 per year in the USA for four quarterly issues: www.spectrumlife.org/subscriptions If you would like printed copies of back issues, we do have a variety still available of most issues. If you live in the Southwest Washington or Portland metro area, you will often see our publisher, Autism Empowerment displaying magazines at special events and our monthly support groups, social clubs and service activities where copies are available for free pick-up. Donations are always welcomed and appreciated as we are a 501(c)3 nonprofit and depend on public generosity to be able to print our publication. For those out of the area, we also list copies of magazines online at our Autism Empowerment eBay for Charity online store: www.ebay.com/usr/autismempowerment.

As far as articles to share, here is a curated list of seven reader favorites. Celebrating Holidays with an Autistic Child by Rhonda Day (Winter 2013) - Tips for parents and grandparents regarding out-of-town travel and guests during the holidays. www.spectrumlife.org/blog/ celebrating-holidays-with-an-autistic-child-177 Educational Toy Guide by Karen Krejcha (Winter 2016) Supporting a child’s interests helps empower their play. Ten key points to consider when purchasing toys for children on the autism spectrum. www.spectrumlife.org/blog/ educational-toy-guide-supporting-a-childs-interests-62 Holidays and Breaks in Routine - Tis the Season to Plan for Change by Tara O’Gorman (Winter 2016) - Strategies to help plan for breaks in structure and routine during the holiday season. Ways to prepare in advance for the social and sensory challenges that come with family gatherings, public outings, and the extra stimuli of holiday decor. www.spectrumlife.org/blog/holidays-and-breaks-inroutine-tis-the-season-to-plan-for-change-58 Great Expectations - Lowering the Bar to Increase Confidence During the Holidays by Joanna Blanchard (Winter 2016) - Advice to help families with managing holiday expectations for themselves and their children. Tips for reducing stress during the holidays. www.spectrumlife.org/blog/great-expectations-loweringthe-bar-to-increase-confidence-during-the-holidays-57 Help for Lessening the Bumps in the Road of Holiday Family Travel by Melinda Thompson (online: Winter 2013, print: Winter 2016) - Remember, it’s not the destination, it’s the journey. Tips for navigating travel by plane, train or automobile while avoiding sensory overload. Strategies for amusement parks. www.spectrumlife.org/blog/help-for-lessening-the-bumpsin-the-road-of-holiday-family-travel-135 12 Ways to Spread Holiday Cheer by Karen Krejcha (Winter 2017) - We all have strengths and gifts to give. Here are 12 ideas to encourage volunteerism, spark warmth and spread genuine holiday cheer during the season. www.spectrumlife.org/blog/12-ways-to-spread-holidaycheer-we-all-have-gifts-to-give-34 Healthy Holiday Exercise Ideas by Ryan Lockard (Winter 2017) - Winter fun without the sun. Fun and easy ways to get some movement in during the cold winter months. www.spectrumlife.org/blog/healthy-holiday-exerciseideas-winter-fun-without-the-sun-32

May your Winter be wonderful! www.spectrumlife.org

37


HEALTH + WELLNESS

Fear, Anxiety and Autistic “Behavior” Work with us, not on us. By Judy Endow, MSW, LCSW Throughout the history of autism many have put their efforts into changing the behavior of autistic people. It is my opinion, and that of many of my autistic cohorts, that not enough effort has been made to understand and work with the autistic who is employing the behavior you wish to extinguish. Many autistics live with a high degree of fear and/or anxiety. We have sensory systems that often do not serve us well, delivering information too big, too small or distorted. The way our neurology processes sensory information is often delayed and/or filled with reverberation. Many of us have a thinking style that is literal, concrete and visual. To complicate everyday life, none of these things are stable. We cannot predict from day to day our experience of the sensory impacts from the world around us along with our ability to take in and process information from the people in that world. This is the platform that supports communication. For neuro majority folks (those whose neurology is considered typical), it works rather fluidly. In fact, I am told they don’t even consciously think of these things! For autistics it is quite different. Because we do not have a way to predict if, when or how our bodies will serve us (or not!) it is quite common for autistic people to have some level of ongoing fear and/or anxiety. Try On a Tiny Bit of Autism:

38

Now that you have vicariously tried on a tiny aspect of autistic experience, it may be easy for you to imagine that you might develop some ways to cope with this constant, but unpredictable daily TV experience. Some of you might try to hide from the TV. Others might develop a humming noise to drown out the TV sound. A few of you would become so exasperated you might scream, throw something or try to hit a person who repeatedly tries to reason with you. Your behaviors would certainly annoy those around you. After all, they are not experiencing the TV like you are. It is just background noise to them. They really are not even aware of this TV most of the time. Because their experience of this TV is so different from your experience, they have no idea that your behaviors are the best solutions you have come up with to cope with the problem of this TV! Instead, they want to extinguish your behaviors so you might better fit in with the other students at school or employees in your workplace (if you are fortunate enough to have a job). Autistic behaviors are solutions to the problems we experience. The behavior may not fit well into a classroom, the home, community or place of employment, but it is a solution. It does not work well for autistics when you take away our solutions even if you can rationalize why it might be a good thing to extinguish a particular behavior. In fact, if you take away our one and only solution to a particular problem, we will find another solution. We have to because the problem is still there.

Imagine your TV to be on all day and both the channel and the volume were entirely random and not in your control. The volume might be nothing or so loud as to be painful. You do not know when it will change. The TV is with you wherever you go. When you are working you are expected to relegate it to unimportant background noise even if it is so loud as to be painful. You never know if you will be interested in the TV show playing and if you are interested, chances are, the TV channel will change before the show is finished. When you are not actually supposed to be paying attention to this TV, like when you are at school or work, you are not able to turn it off.

Instead of trying to extinguish our behaviors here are a few helpful ideas to try instead:

By now, you may be feeling a bit anxious. If this unpredictable experience occurred every day, you might become fearful. Over time, your inability to control the sensory assault of the environment around you might become depressing. It would be understandable if you experienced anxiety, fear or depression in response to this unpredictable TV.

Join with the person to expand his solution repertoire.

Now imagine this experience in all your sensory systems – not just auditory and not with only one auditory agent – the TV. This is often the autistic experience – but not always – because we can never predict.

Jack wanted friends so I gave him the information that when he makes noise, kids feel frustrated or annoyed because they cannot concentrate. This makes it less likely kids will want to be friends with him.

www.spectrumlife.org

Give the person credit for solving a problem. Jack, a student I recently worked with hummed or muttered a script aloud so often that it was distracting to others. When I asked if he knew why his teacher wanted me to meet with him he said, “I tick people off. She wants me to stop.” I told Jack I thought he was smart. He figured out things for himself. He hummed and scripted for a good reason or he wouldn’t be doing it. I drew it out using cartooning, putting in our words.

I drew another cartoon frame with Jack humming and three other students with thought bubbles. Amory’s thought bubble said, “I can’t concentrate. I wish Jack would stop humming.” Jessica and Lilly also contributed to the thought bubbles.

Continued on next page

38


Fear, Anxiety and Autistic “Behavior”, continued from page 38

We started a list called “Humming Replacement Possibilities.” I told Jack he was smart to figure out humming so I knew he could figure out other things and that I would do what I could to add ideas. The ideas we brainstormed were put to the test – actually rated by Jack on a 1-5 scale from not at all helpful (1) to more helpful than humming (5). After four weeks Jack had discovered several helpful strategies to use. The function of Jack’s humming was to block out environmental noises (mainly the sound from fluorescent lights and furnace running). The function of humming was discovered by looking at the solutions that worked best for Jack – turning off the lights, using noise cancellation headphones, and listening to iTunes waterfall music via earbuds.

where they want to go in life. And when that happens in my life or in the lives of others, we celebrate together, knowing the future has more possibilities because we have once again experienced our potential to figure it out! This article was originally published for Ollibean.com on December 12th, 2015. It also appears on Aspects of Autism Translated at www.judyendow.com.

Celebrate success, underlining self-determination and self-advocacy. Most of the time success comes after hard work. It is not easy to expand behavior solution repertoires. When progress is made, acknowledge and celebrate. Underline the aspects of self-advocacy and self-determination. Knowing we can decide and figure out things in a way that helps us get what we want (friends and completing school work in Jack’s case) and gives us options to live more comfortably is a powerful thing. Selfdetermination and self-advocacy are important skills for all people and autistics often need to intentionally learn, think about and employ such skills. In my life, as an autistic, I have had the privilege of having some good people along the way who worked with me, not on me. These were the people and the circumstances that changed my life for the better. Today I try to be that person who joins with, who becomes a catalyst for others getting

Judy Endow, MSW, LCSW maintains a private practice in Madison, Wisconsin, providing consultation for families, school districts, and other agencies. Besides having autism herself, she is the parent of three grown sons, one of whom is on the autism spectrum. Judy can be reached through her website, www.judyendow.com. www.spectrumlife.org

39


HEALTH + WELLNESS

Ask the Personal Trainer Your Fitness Questions Answered By Ryan Lockard, CSCS, CFNS In each issue of Spectrum Life Magazine, Health and Wellness expert, Ryan Lockard answers reader questions about health, fitness, nutrition and athletic training for youth and adults on the autism spectrum. Additional questions are answered at our SpectrumLife.org website blog. Question: What are some of the exercises your trainers teach at Specialty Athletic Training that can be replicated at home? Answer: We have been getting a lot of questions about exercises that you can do at home by yourself or with your child. Here is one of our favorite complex movements to do with our clients that you can do using a chair and any ball that you have lying around the house. Box Squat to Overhead Press • Start seated with feet slightly wider than shoulder width apart and feet flat on the floor. • Holding a medicine ball at chest height, stand and then press the medicine ball overhead.

1

• Lower the medicine ball to chest height and slowly sit back down while maintaining good posture. • Repeat for the prescribed amount of repetitions. Question: Workout music playlists - I’ve heard they can be very motivating but my music tastes are as my child puts it, “from the dinosaur age.” What current songs are popular with your clients?

2

Answer: Are you having a hard time staying motivated during your workout? Try adding music to your routine! Music has been shown to increase your mood, attention, and makes working out more enjoyable. Here is a list of some songs that were recommended by our clients. • Flo Rida – “Right Round” • “Weird Al” Yankovic – “White and Nerdy” • Adele – “Hello” • Queen – “Bohemian Rhapsody” • The Eagles – “Hotel California” • Katy Perry – “Roar” • Austin Mahone – “Till I Find You” • Pharrell – “Happy” • Dwayne “The Rock” Johnson – “You’re Welcome”

Have a question you’d like answered? Email: Ryan@specialtyathletictraining.com or spectrumlife@autismempowerment.org. You may see your question featured in a future issue and on the SpectrumLife.org website!

40

www.spectrumlife.org

3 Ryan Lockard is the founder and head trainer of Specialty Athletic Training, a personal training company located in Portland, OR and Vancouver, WA, that specializes in fitness programs for children and adults with special needs. He is a Certified Strength and Conditioning Specialist (NCSA) and Certified Fitness Nutrition Specialist (ISSA). He can be reached at Ryan@SpecialtyAthleticTraining.com or www.SpecialtyAthleticTraining.com.

Continued on next page

www.spectrumlife.org

Photo courtesy of Mary Rebekah Moore

40


Your Chance for a Better Life

Although it is something she did on a regular basis, Susan was again anticipating feelings of stress and anxiety. When your child has autism, the weekly trip to the grocery store is no small task. However, this week it wouldn’t just be Susan and her son, Luke. Chance, an Autism Assistance Dog, would be with them

as well. Chance has been trained to act as an anchor in the event that Luke bolts, yet he is so much more than that. With Chance by his side, Luke feels more calm and confident. Simply put, with Chance’s help, the shopping trip was better. Life is better. Call to learn how an Autism Assistance Dog can help you.

Serving Oregon and Southwest Washington  www.dogsforbetterlives.org

 (800) 990-3647

41


therapy THERAPEUTIC OPTIONS AND RESOURCES

IN THIS SECTION Bold Pediatric Therapy Center....................................................................43 Upcoming Autism Empowerment Events.............................................46

38

www.spectrumsmagazine.org

42


THERAPY

BOLD Pediatric Therapy Center Emboldening Children to be their Best! By John Krejcha BOLD Pediatric Therapy Center may be relatively new to Beaverton, Oregon, however co-owners, Dr. Sandra PelhamFoster, OTD, OTR/L, MPHA and Kimberle Rathbun, OTR/L each have decades of professional experience. Their BOLD way of helping to empower youth and families have allowed them to grow their practice to nine clinicians in just over a year. Spectrum Life Magazine spoke with Sandra and Kim to learn more about their journey and the therapy services they offer.

Please tell our readers a little about yourselves and your professional background. Kim and I have been occupational therapists working with children in the Portland area for the past 30 years. Both of us have been strongly connected to the professional community and pediatric community. Over the past 30 years, Kim worked in many pediatric therapy centers and very quickly moved to supervising the therapy teams. She successfully supervised a large therapy team at what was previously the Developmental Artz Center and then later supervised the rehabilitation team of occupational, physical and speech therapists at Randall Children’s Hospital. I (Sandra) began my early career first in the school system and then helped develop pediatric therapy services at Providence Hospital. Then 15 years ago, I became an associate professor teaching OT graduate students and

43

www.spectrumsmagazine.org

was the Academic Fieldwork Coordinator for the Occupational Therapy Program at Oregon’s only school for OT education at Pacific University. During this time I also acquired a doctorate degree with a focus on the history of feeding challenges for children. During this time, Kim and I became professional colleagues and friends, at times working together, sharing patients, and sharing opportunities for OT student education.

So how did BOLD Pediatric Therapy Center come to be? Early in 2017, the Portland therapy services community experienced a big change in available resources and a large organization stopped serving the pediatric developmental community. Many families were left wondering where they could turn to find support for their children. Over a routine get together for coffee, we shared talk about this change of events. As we are both passionate about children and supporting the Portland community, we said to each other, “Someone should do something to help these families.” And in the very next breath… “That should be us!” So together with our spouses, all who have different skills to bring to the table, we began a new pediatric clinic. Continued on next page

www.spectrumlife.org

43


BOLD Pediatric Therapy Center, continued from page 43 How did you come up with your great name? The name was chosen out of reflection on families, events, and what we saw as the vision for families and their children, to be BOLD! We want everybody to feel supported in a way that emboldens children to be their best and to inspire clinicians who work at BOLD Center to feel empowered to do what is needed for families to live and enjoy their life with their children, in the activities they choose to do. What type of therapy approaches and services do you offer at BOLD Center and what ages do you serve? In the first year of development, we have focused on building therapy services, occupational therapy, speech therapy, and physical therapy. The demand for this support has been unbelievable and we are so grateful that we have been able to find and bring onto the team skilled and passionate clinicians who are able to support children from birth to adulthood. Even as children move into early adulthood, they oftentimes need therapy supports during transitional stages of development or during growth spurts. As most parents know, the changes of teenage years can be a challenge for even the very best of families. BOLD understands this need for support across all ages. We also have a personal passion for supporting people with feeding difficulties and with our many years of experience in

this area of practice, we can offer opportunity for children to develop skills to be able to eat a meal with their family or just hang out with their peers and eat a pizza, as some might want to do. The area of feeding difficulties is a growing area of the practice at BOLD and will continue to develop in year two. Do you or any of your staff have a personal connection to someone on the autism spectrum or with special health needs? BOLD Center has been open just over one year and has nine clinicians supporting families. This includes occupational therapists, speech therapists and a physical therapist. All of our clinicians have a connection to someone with ASD, either as a family member or friend. All the BOLD clinicians have a passion for their work. Many have long-standing relationships with people with ASD whom they served as young children and who are now functioning engaged members within the community. What inspired you to create a program that serves the autism community as well as those with other developmental challenges? BOLD Center was inspired by the community’s need for support and resources. Essentially the support we provide is to assist each person in developing the best skills within themselves. Focusing on strengths is an important part of

PEDIATRIC THERAPY CENTER Supporting Children With Developmental Needs • Occupational Therapy • Physical Therapy • Speech Therapy • Groups & Camps

971.249.2653

1815 NW 169th Place • Beaverton www.BOLDPediatrictherapy.com 44


BOLD Pediatric Therapy Center, continued from page 44 what we do at BOLD. Although we understand that the diagnosis is important to navigate the healthcare system, for the BOLD team, it is about building the unique abilities within each person regardless of their diagnosis. Would you please share a story about a client you have helped? Absolutely! Sara (pseudonym) is on the autism spectrum and was around two-years-old when I (Kim) first started seeing her at a prior clinic. She now works with me here at BOLD. When I first met Sara she was 100% on a gastronomy tube for nutrition, bathing was being done via sponges in a large Rubbermaid tub and haircuts were a challenge at best. For Sara, taking a bath was agonizing and filled with pain from start to finish. We wanted to figure out how to help Sara and we quickly learned that her tactile system was out of balance and that many of her issues (bathing and eating) were all related to this imbalance. A larger part of our assessment process is to identify each youth’s strengths. We quickly discovered that Sara was visually skilled and we built our strategies around her strengths as well as the family’s strengths. Sara is now nine-years-old, she takes long baths (sometimes up to an hour) and enjoys the water. She can now wash her face and is able to get her hair cut. She can now brush her teeth with water and we are working on adding toothpaste. In addition, she can now eat things orally. She is continuing to work on different types of food. There is still work to be done but we practice and build on each success. With each success, we are moving forward to make sure she will have the skills for success in the future. We were interested to learn that you offer Parent Support & Education sessions as well as parent support groups. Please tell us more. Over the summer, BOLD engaged in a doctoral research program with Pacific University School of Occupational Therapy, establishing opportunities for parents to share their stories and providing an outlet for discussion and dialogue. This proved to be a very positive experience for parents and validated them in their role as a parent. BOLD hopes to offer this again next year as well as develop more opportunities for parent support groups to build community and mutual support for each other. BOLD also offers camps over the December and Spring Breaks as well during the summertime. Can you tell us more about these camps? BOLD Center works to also offer support for those unique times when families are looking for additional opportunities for their children. Currently, Portland State University’s Speech Pathology Program is partnered with BOLD to offer language and literacy services. This has been a win-win for families who need support for their children in the area of dyslexia and more academic language support while working with graduate speech pathology students. This service is

offered two times per week and if people are interested they can contact BOLD to learn about the next group starting in January 2019. BOLD also offers small group holiday and spring break camps. One camp focuses on fine motor handwriting development while creating holiday crafts and activities in order to engage children in what is often a challenging task for them. This group is run by an occupational therapist with a specialty in Fine Arts. A second small group camp focuses on social skills development. This opportunity sets children up for success to engage with peers in an environment that supports their self-regulation and offers activities of mutual interest in a natural way that allows people to begin to interact with one another. Why did you choose your location place and where are you located? We were very aware of the need for therapy support for families located on the Westside. The location was chosen to make it easier for families to navigate traffic and not have to travel all the way into Portland, which takes time and often presents its own challenge for their child sitting in the seat for prolonged travel. BOLD Pediatric Therapy Center is located at 1815 NW 169th Place, Suite 3070, Beaverton OR 97006. We are just off Highway 26. What is the best way for somebody to get started with BOLD to determine what type of therapy might be beneficial? The best way to navigate support for your child is to just call BOLD Center at (971) 249-2653. Our intake process allows families to ask questions and share what they might be seeking for their child at this point in time. We also learn about family lifestyle. The BOLD team can help families get connected and walk them through the process if they are seeking supports that BOLD offers. They are also knowledgeable about other community resources and can redirect to other professionals and services. Is there anything else you would like Spectrum Life Magazine readers to know? BOLD Center is focused on sustaining a value-based practice. Healthcare has become such a challenge for families to navigate and can quickly become overwhelming. We all value family centeredness and want each person to feel connected and supported when they come for services. Offering support while validating parents’ skills with their children is important and BOLD wants to offer this in the context of a community for families. To connect online visit: www.boldpediatrictherapy.com and we also invite you to follow us at Facebook: www.facebook.com/BOLDpediatrictherapy

www.spectrumlife.org

45


Upcoming Events

4

www.AutismEmpowerment.org

For a full listing of additional events and gatherings in our community, visit www.SpectrumLife.org and www.AutismEmpowerment.org

december

MONTHLY - Last Saturday

Saturday, December 1st Joel Suzuki Series Book Four Launch Party 4:00 pm - 5:00 pm Kazoodles Toy Store 13503 SE Mill Plain Blvd, #B-3, Vancouver, WA 98664

Regal My Way Matinee Sensory Movie 10:30 am showtime, doors open at 10:00 am 7800 NE Fourth Plain Blvd. Vancouver, WA 98662

Author Brian Tashima is excited to launch his fourth book in the Joel Suzuki Series, Fable of the Fatewave. Come meet Brian and have your book signed by the author.

December 29th, January 26th and February 23rd

www.facebook.com/JoelSuzukiSeries www.joelsuzuki.com

JANUARY 2019 Happy New Year from Autism Empowerment and Spectrum Life Magazine!

FEBRUARY 2019 Quarterly Adult Social and Game Night Stephen’s Place 501 SE Ellsworth Rd, Vancouver, WA 98664 Dates Coming Soon Starting in February 2019, Autism Empowerment is pleased to offer a quarterly Social and Game night for adults ages 18+ Check on our website at www.AutismEmpowerment.org for more information or email us at info@autismempowerment.org. Autism Empowerment and Spectrum Life Magazine appreciate your support: www.AutismEmpowerment.org/donate

46

www.spectrumlife.org www.spectrumsmagazine.org

Call 844-462-7342 ext 433 in advance for movie that will be showing.

Autism Empowerment offers Support Groups, Social Clubs, Game Nights and Volunteer Service opportunities. Please see our website for dates/times and Facebook group page links. Ongoing Support Groups: • Adults on the Autism Spectrum (peer-led) • AWEtism We Embrace (Neurodiverse & NT) • Parents of Tweens/Teens Support Group Ongoing Social Groups: • SW WA Tween and Teen Social Club (11 - 19) • Adult Game Nights - Quarterly Ongoing Service & Volunteerism: • Autism “Rocks” - Rock painting, hiding and collecting (All ages) • Autism Serves Kids Care Club (8 - 18) • Autism Serves - Volunteerism for all ages

Connect with us online! /SpectrumLifeMagazine /AutismEmpowerment @SpectrumLifeMag @AutismEmpowermt AutismSpectrumLife

Autism Empowerment

Autism Empowerment


As one of the few schools in Oregon devoted to students with learning differences and the only one focused exclusively on the critical middle school years, Bridges offers its students small class sizes, differentiated instruction, and a safe place to learn and grow. Learn about our unique academic Lea program, our admissions process and important admission deadlines at our Open House on Saturday, October 20, 2018, 10-11AM. You can ďŹ nd us in the heart of downtown Portland at 2510 SW First Avenue, 97201. BridgesMS.org | 503-688-2922

Admission inquiries for the 2019/ 2020 academic year are now being accepted at BridgesMS.org. Space is limited. Preference given to 5th grade applicants. 47


As an Independent Apartment Community (IAC), Stephen’s Place offers positive living options for adults with developmental disabilities. fo With forty-one modern apartments, our focus is on community; empowering and enabling each resident to be a productive contributing member of their community.

Call or email us to schedule a tour (360) 984-3600

info@stephensplace.org 501 SE Ellsworth Road, Vancouver, WA 98664

Apartment rent is inclusive of all meals, supportive services, nursing & ADL assistance and programming including: Job Skills Training, Placement & Coaching Life Skills Training Ho Horticultural Therapy Group Fitness Classes & Yoga Arts & Crafts Movie Nights Sporting Events Group Outings to Local Attractions Transportation Services We also offer a Day Program to people who live outside of the Stephen’s Place community, but would like to build peer relationships

Learn more about us @ www.stephensplace.org

and participate in activities.


Issuu converts static files into: digital portfolios, online yearbooks, online catalogs, digital photo albums and more. Sign up and create your flipbook.