Spectrum Life Magazine Winter 2020 - 2021 Issue from Autism Empowerment

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

m a g a z i n e

RECOVERY SERVICES IN THE AGE OF COVID-19 FRIENDOMETRY BALLAD OF THE BLUEROCK SENSORY KIDS (AND ADULTS TOO) AUTISM EMPOWERMENT PODCAST HOUSING INSECURITY IN THE I/DD COMMUNITY

WINTER 2020-21

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WINTER 2020-21

contents

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Recovery Services in the Age of COVID-19

FEATURED SECTIONS

4 7 10

From the Publisher After a rocky year, 2021 brings fresh hope.

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ADVOCACY

28 30

My Journey with COVID-19 Karen Krejcha shares the challenges of long-term illness.

Escalating Housing Insecurity in the I/DD Community Undercounted and underserved.

LIFESPAN

13 16

EDUCATION

Autism Empowerment Podcast Amplifying Acceptance for All Abilities.

Pandemic Stress from a Parent’s View A father juggles work, distance-learning and family.

20 22

Ballad of the Bluerock Will Joel Suzuki be able to save the universe?

Permission to Fail Priorities reassessed.

Autism, Social Greetings and Rhetorical Questions Social norms are not always intuitive.

HEALTH + WELLNESS

33 36

The Autistic Sensory System Sensory movement differences and patterns.

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Adapting to the New Normal At Specialty Athletic Training.

Recreation Friendometry A friend finder for kids.

Recovery Services in the Age of COVID-19 Differences between recovery services and compensatory education.

Ask Spectrum Life Toolkits and resources help take charge of your health care.

therapy

41 46 47

Sensory KIDS (and Adults too) Family-Centered, Kid-Driven, Therapist-Led. Spectrum Life Resource Directory Spectrum Life Magazine online helps you find autism-friendly service providers.

Upcoming Autism Empowerment Events Podcasts, Enrichment, Support.

www.spectrumlife.org

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FROM THE PUBLISHER

SpectrumLife TM

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WINTER 2020-21 | VOLUME 10, ISSUE 1 SPECTRUM LIFE MAGAZINE TM A program of Autism Empowerment TM Karen Krejcha, Autism Empowerment, Publisher Dave Born, Graphic Designer

Welcome to a New Year and the Winter 2020-2021 edition of Spectrum Life Magazine!

Editorial Advisory Board:

It feels awesome to be back! The last time I wrote a magazine intro was in our Spring 2020 issue. Little did we know then that the COVID-19 pandemic would blindside the world, and here in the Pacific Northwest, the upheaval was just beginning.

Amy Donaldson, Ph.D., CCC-SLP Laurie Drapela, Ph.D John Krejcha Tara O’Gorman, MSW Heather Parrott Brian Tashima

Due to regional closures of most of our distribution points, Autism Empowerment made the hard decision to not publish a Summer or Fall 2020 issue. This is the first time we have published a Winter issue in January instead of December, as we wanted to start 2021 with a hopeful attitude. (Quite frankly, we couldn’t wait for 2020 to end. It felt like the longest year ever!)

Because of the pandemic, this issue is unlike any we’ve ever published and we hope you’ll find it interesting, useful, supportive, and relevant to the world we live in today.

Navigating distance learning has been a hot topic. Our cover article, Recovery Services in the Age of COVID-19 (page 26), lets families know the difference between compensatory education and recovery services. Permission to Fail (page 28) prioritizes mental health when an educator’s son falls behind in his high school classes. Even before the pandemic, there was Escalating Housing Insecurity in the I/DD Community (page 10), Other pandemic-slanted articles include My Journey with COVID-19 (page 7) and Pandemic Stress from a Parent’s View (page 16).

Looking for something lighter? Joel Suzuki and Brian Tashima are back in Ballad of the Bluerock (page 22). Friendometry shares about their friend finder service for kids (page 20) and we go behind the scenes for the relaunch of the Autism Empowerment Podcast (page 13).

Many organizations have updated their service delivery. Specialty Athletic Training is Adapting to the New Normal (page 38) with virtual fitness. Sensory KIDS (page 41) now offers OT for adults and online training series for parents.

Autism Empowerment and Spectrum Life Magazine are going through changes too. Our focus this year will be on expanding educational content in print, audio, and video form. Wherever you identify in your autism or autistic journey, Autism Empowerment is here to meet you along the way with acceptance, enrichment, inspiration, and empowerment for the road ahead.

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

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Mailing address: Autism Empowerment P. O. Box 871676 Vancouver, WA 98687 (360) 852-8369 www.AutismEmpowerment.org spectrumlife@autismempowerment.org Autism Empowerment is a 501(c)3 nonprofit devoted to promoting a culture of acceptance and empowerment for children, teens, adults and families within the Autism and Asperger community.

Autism Empowerment makes no warranty, guarantee, endorsement or promotion of any service provider or therapy option listed in this publication or our websites: AutismEmpowerment.org and SpectrumLife.org. This is a free community magazine created as a courtesy to the public. Autism Empowerment cannot be held liable for any action or decision based upon information found in this publication or our websites. It is the responsibility of individuals to discuss any therapy or treatment option with their care team. Every effort is made to ensure accuracy and verify information, however readers using this information do so at their own risk. No part of this publication may be reproduced or transmitted without prior written consent from the publisher, Autism Empowerment. © 2021 All rights reserved.

ON OUR COVER Winter is the time for snowball fights, building snowmen, hot chocolate and family fun time!

Recovery Services in the Age of COVID (page 26)

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advocacy

IN THIS SECTION My Journey with COVID-19............................................................................7 Escalating Housing Insecurity in the I/DD Community .................... 10

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Photo courtesy of Anna Shvets

EMPOWERING CHANGE WITHIN THE AUTISM COMMUNITY

ADVOCACY

My Journey with COVID-19 STORIES from the SPECTRUM Autism from an Autistic perspective

In the middle of February 2020, a novel Coronavirus was starting to spread worldwide, which people would know as COVID-19. This new virus turned into a worldwide global pandemic the world had not seen since the 1918 influenza pandemic, also known as the Spanish flu.

This “Stories from the Spectrum” will be slightly different from previous articles in this series as it is in a question and answer format. Today we are talking with Karen Krejcha, Executive Director and Co-Founder of Autism Empowerment, Editor of Spectrum Life Magazine, and Autism Empowerment podcast host. She will be talking about her battle with COVID-19.

Karen, thanks for being willing to talk about this. I know this has been a long and rough road.

You’re welcome. This is a sensitive topic for my family and me. However, I hope that someone out there may benefit from hearing my autistic perspective.

What were your first symptoms of COVID-19, and when did you first have those symptoms?

The first symptoms I noticed were exhaustion, overall achiness, and a headache that wouldn’t go away. That was in early March 2020. Before catching COVID-19, I rarely slept more than 4-5 hours straight per night and had difficulty falling asleep. By the name April rolled around, I was having chills, fever, and sleeping 12-14 hours straight.

Do you have any idea where you may have caught it from?

That’s the million-dollar question! I don’t think I’ll ever know for sure. When I first noticed I wasn’t feeling well, I was working at home finalizing the Spring 2020 issue of Spectrum Life Magazine. The only place I went out to was an information night at my son’s high school for families of incoming 9th graders. That was February 24th, 2020.

When did you know it was serious enough to contact your medical provider?

It was that debilitating headache. It was different than any headache I’ve ever had. It wasn’t a sensory overload headache or migraine. It started in the front and was in the middle of my head, pulsating stronger then softer.

When it was strong, it was powerful and radiated to the back of my head. Tylenol did nothing. Coated ibuprofen did nothing. The migraine prevention medication I had did nothing.

It was extreme on March 19th, so strong that we spent a few hours navigating the healthcare phone system reaching advice nurses and finally a doctor. By then, I was showing many symptoms of COVID-19 (e.g., headache, cough, fever, bad chills, reduced sense of smell and exhaustion), and I asked if I could get tested. They said they would like to but unfortunately, I couldn’t.

Why couldn’t you get tested?

There simply were very few tests available in March and April in Washington and Oregon. At that time, Oregon was only receiving 40 - 80 tests per day and where I live in Vancouver, Washington, there were few tests also.

My healthcare provider network serves Oregon and Southwest Washington and I was told I could not get tested unless I was hospitalized overnight or a healthcare worker with a vulnerable population.

So then what happened?

I got much worse and was in the hospital emergency room for the first time at the end of March. I had trouble breathing, my oxygen was low, my hacking cough was similar to the cough I had when I had pneumonia a few years prior, and I was running a consistent fever. My headache was non-stop agony.

They tested me for influenza (which if it were positive would eliminate the possibility of COVID-19) but as suspected, I was negative for the flu. While in the hospital, my oxygen levels dropped, I became dizzy, and had trouble breathing. They wanted to give me a COVID test but didn’t have any in the emergency room. They were also very low on Personal Protective Equipment (PPE).

When I was eventually released, I was given an inhaler, a headache cocktail that probably could have knocked out a horse but didn’t work on me, and was scheduled for a follow-up call with a doctor the next day. I was also given COVID-19 paperwork and told to assume that I had COVID-19. They asked me and my family members to quarantine for 14 days and stay in quarantine if I continued to have fever, cough, or shortness of breath.

How long were you in quarantine?

I was in quarantine for almost four months due to symptoms that didn’t improve. We kept a chart of my daily temperature reads, oxygen levels, and other symptoms. Although I took fever-reducing medication, I still had daily temperature readings over 100 degrees for the next few months. It was exhausting.

Continued on page 8 www.spectrumlife.org

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My Journey with COVID-19, continued from page 7 How do you think being autistic impacted you? Did the doctors know?

I was living on sensory overload much of the time when it came to sensitivity to light and noise. Interestingly enough, my sense of smell was drastically diminished. It wasn’t a commonly known symptom at the time. It was bizarre having a reduced sense of smell because I’m generally a “super sniffer” who smells everything.

On my best days, I am not a fan of talking on the phone even though I can do it. On my worst days, particularly when I feel sick, it’s almost impossible because I struggle to process what people say and then turn that into a coherent reply.

This is a commonly reported concern of autistic people.

During that time, there were SO many phone calls and telehealth appointments to navigate. When calling in, I never got to the person I needed right away. And to make things more frustrating, I kept needing to repeat my story over and over again with multiple people. I advocated for my husband to speak on my behalf, and he tried his best, but in almost every case, they said they needed to talk with me.

Those doctors got to sit through a lot of agitated coughing fits and uses of my inhaler.

My husband also wasn’t allowed to go into appointments with me. Although I have strong self-advocacy skills when I’m feeling well, that is not the case when I’m sick. I would disclose being autistic whenever I felt it would be of benefit; however, I wasn’t taken very seriously in several cases because I didn’t appear or sound “autistic enough.” It was extremely frustrating and triggered anxiety and depression.

How did you balance COVID-19 with your family and your work with Autism Empowerment?

We have two children at home, one who was in 8th grade at the time and another in college. Both are on the spectrum.

While I was sick, my husband John really stepped up to help with distance learning and wherever else needed.

Thanks to my autistic neurology, on good days, I could hyperfocus on important work projects while mentally blocking out distracting symptoms. Unfortunately, I couldn’t do this as often as I would like. I knew my body well enough to realize that when I worked for an extended period of time, I would crash afterward because my daily tokens were almost depleted.

I felt a lot of guilt, shame and embarrassment during those months. I thought I was letting my family, friends and everyone at Autism Empowerment down. At one point on April 2nd, I posted a Facebook live video at Autism Empowerment to describe what I had been experiencing.

Shortly before that, I believed it was possible that I might die.

I wanted to let people who I cared for know that I loved them and share some words of encouragement to those I knew at Autism Empowerment and in the greater autism, autistic and disability communities. Despite my best intentions, I think it was too raw and after a few thousand views, I took it down because I wanted to protect my family.

Due to the pandemic and state shutdown requirements, Autism Empowerment had to close all in-person gatherings

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for our support groups, social clubs, and Autism Kids Care Club volunteerism program. That happened in March 2020, and we still aren’t able to meet in person yet.

Although most people have been kind and understanding, some people did struggle with it more than others.

Despite knowing I had COVID-19, some just didn’t care and even bad-mouthed us for not finding a way to continue our programs.

How did you handle that?

At first, I wasn’t aware, but as I began to hear things through the grapevine, I tried to address the situation respectfully. We wanted to approach people from a place of grace and understand that they were struggling too. If they were mad at our programs closing, it was less about us personally and more about the situation, the disruption of routine, and a feeling of disappointment and helplessness. I don’t fault people for that.

This pandemic has been hard on so many people. Although I’ve seen a lot of resilience that has given me hope, there has been a lot of sadness, pain and struggling too.

It’s now January 2021. How are you feeling physically and mentally?

I am what is called a COVID long-hauler. Although I’d like to say and think I’m back at 90%, the reality is I have long-term effects and additional health problems that have developed since first becoming sick. The most difficult to manage are brain fog, aches and joint pains I didn’t have before, headaches and fatigue. I also have anxiety about catching COVID again.

(This has happened to a friend and others I know.)

I have found support with a group on Facebook called Survivor Corps. They are a nonprofit grassroots movement educating and mobilizing COVID-19 survivors and connecting them with the medical, scientific, and academic research community to help stem the tide of this pandemic and assist in the national recovery.

Thank you for sharing your story. I wish we had space to talk more.

You’re welcome. I do have a lot more to share, so we will be doing a special Autism Empowerment podcast episode in January or February 2021 to supplement this article. To find it, be sure you’re subscribed to the podcast and visit www.autismempowermentpodcast.org for Show Notes and a transcript.

Karen Krejcha is the co-founder of Autism Empowerment, where she serves as Executive Director. She is the Editor of Spectrum Life Magazine and host of the Autism Empowerment podcast. Karen was diagnosed on the autism spectrum in her 40s, after the diagnosis of her two children. She has been married to John for over 28 years and is devoted to promoting a culture of acceptance and empowerment within autism communities and worldwide.

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ADVOCACY

Escalating Housing Insecurity in the I/DD Community Undercounted and Underserved By the Kuni Foundation People experiencing intellectual and developmental disabilities (I/DD) face a housing crisis that is hidden by woefully inaccurate data. Based on best estimates, more than 24,000 of the estimated 31,000 adults experiencing I/DD in Oregon and SW Washington are at risk of housing insecurity due to exclusion from planning processes, escalating housing costs, and an unprecedented number of aging caregivers, according to a data study and set of recommendations released recently by the Kuni Foundation.

Research used by states and nationally to count the I/DD population—and to estimate the number of people experiencing I/DD who are at risk of housing insecurity—rely on 25-year-old data. Current data on the adult population experiencing I/DD are not collected; in fact, relevant questions have been removed from national health surveys in recent years. More recent state level data from Ohio, applied to Oregon and SW Washington, suggests that the actual estimate of people experiencing I/DD could be many times higher.

“Fundamental data on this population—the number of people, basic demographics and living arrangements— are some of the most outdated and assumption-laden this firm has experienced in 30-plus years working on public policy solutions,” says John Tapogna of ECONorthwest.

The firm conducted the study for the Kuni Foundation; the Foundation also sought guidance from an advisory group of advocates, nonprofits serving the I/DD community, people experiencing I/DD and regional housing leaders.

Released in the wake of the 30th anniversary of the Americans with Disabilities Act (ADA), the study documents persistent inequities.

“An entire segment of our population is undercounted, invisible and underserved,” says Angela Hult, president of the Kuni Foundation. “The lack of options and access underscore the urgent need for affordable, inclusive housing options for people experiencing I/DD.” “By eliminating silos between disability rights advocates and housing providers, and working together, we have an opportunity to pursue creative solutions in response to this crisis.”

Near-term opportunities include dedicating resources for people experiencing I/DD within the Metro Regional Government’s supportive housing measure in the

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tri-county Portland area. In Washington state, the Legislature needs to prioritize housing options for people with I/DD in current budget planning, especially in the face of COVID-19 related cuts. Longer-term, across Oregon and Washington, the Foundation points to a need for more accurate data, an increase in affordable and supportive housing options, better connections between housing and support services, and inclusion of people experiencing I/DD in housing planning and policy decisions.

Better collaboration offers immediate opportunity, as many available funding streams and incentives go untapped due to lack of awareness. For example, Oregon Housing and Community Services received $2.3 million in rental assistance from the Federal Department of Housing and Urban Development in 2015 to support the integration of 75 affordable housing units for individuals experiencing I/DD in community-based rental properties.

As of 2020, only one-third of these rental assistance vouchers had been used.

“We need to get housing developers and service providers in the same room,” said Bill Van Vliet, executive director of the Network for Oregon Affordable Housing and data study advisory group member.

“I’m not sure all of the affordable housing developers are Continued on next page

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Escalating Housing Insecurity in the I/DD Community, continued from page 10 aware there is service money available to support people with disabilities that would help contribute to operating their properties.”

Increase housing options and connection to services.

The ADA helped advance inclusive access to education and employment, and many people experiencing I/DD want that same opportunity to choose more inclusive and independent housing. Unfortunately, systems and services are not aligned with these preferences and many people are left with few options: live with family caregivers, navigate complex funding and systems to secure rent assistance or regulated affordable housing, or live in group home settings. people experiencing I/DD converge to curb independence.

Beyond ADA-accessible housing, individuals want options ranging from home ownership, to integrated and inclusive environments, to living with peers in group settings.

Based on best available data, 70 percent of all people experiencing I/DD (adults and children) in SW Washington and 61 percent in Oregon live with family members.

A quarter or more of those family members are aging caregivers, and without sufficient access to affordable options, individuals with I/DD could face difficult transitions and housing insecurity when their caregiver passes away.

The COVID-19 pandemic accelerates this concern.

Karen Krejcha and John Krejcha, co-founders of Autism Empowerment (home to Spectrum Life Magazine) were two of the autism and disability advocates who participated as data study advisory group members.

John shares, “Even before COVID-19, we would regularly hear from parents and self-advocates that meaningful and affordable housing options in our region were very hard to find. Families often try to figure this out on their own, but not everyone has the accessibility or financial resources to do so. Navigating different health and human services agencies and systems can be confusing and many operate with a silo mentality.”

Karen states, “Additionally, many autistic adults who genuinely need support are not considered ‘disabled’ enough (by state standards) to qualify for state or federally supported developmental disabilities services. This is problematic on many levels; if they’re not qualifying for services (based on an outdated disability assessment), they’re not counted in data which helps determine resources and funding for how many people could meaningfully benefit from that support.”

According to the most recent data available, only about 16 percent of people of all ages experiencing I/DD in the region live independently, but this is not, in most cases, a reflection of ability or preference. The lack of options, high housing costs and significant poverty rates (28 percent) among

“I hope that when we collectively consider possible solutions, we aim high and think about home ownership too,” said Krista Milhofer, program administrator at People First of Washington and data study advisory group member. “Rent rises, and people experiencing I/DD are not going to work themselves out of poverty. The job rate and social security payments are huge barriers to doing so. The best way to build wealth and capital individually is through home ownership.

Home ownership can give people autonomy and control.”

Community Vision in Oregon helps people experiencing I/DD achieve home ownership, and innovative leaders are creating other options. These include Stephen’s Place, a residential community in Vancouver, WA; Albertina Kerr’s Workforce and Inclusive Housing Project in Portland, OR; and WeBUILT Community in Clackamas, OR for people on the autism spectrum.

Learning from this range of innovative projects, while also investing in new approaches, can advance the scalable, sustainable options that are urgently needed.

Further Reading Material from the Kuni Foundation: 1) From Invisibility to Inclusion - Increasing Housing Options for People Experiencing Intellectual and Developmental Disabilities: bit.ly/invisibilitytoinclusion 2) Housing Needs for Individuals with Intellectual and Developmental Disabilities - Report for the Kuni Foundation prepared by ECONorthwest: bit.ly/housingneedsidd 3) Disability Advocate Toolkit - bit.ly/disabilityadvocatetoolkit 4) Housing Sector and Policymakers Toolkit bit.ly/housingsectortoolkit About Kuni Foundation and Housing Advocacy: The Kuni Foundation believes in the power of human potential. Based in Vancouver, Washington, we invest in scientists advancing cancer research and in accelerating the inclusion of people experiencing I/DD. Our goal is to help expand housing options through convenings, enhanced coordination between housing and support service agencies in Oregon and Washington, improved data collection and grantmaking.

For more information, please visit kunifoundation.org.

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lifespan ALL AGES AND ABILITIES

IN THIS SECTION Autism Empowerment Podcast................................................................... 13 Pandemic Stress from a Parent’s View..................................................... 16

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LIFESPAN

Autism Empowerment Podcast Amplifying Acceptance for All Abilities After a multiple-year hiatus, the Autism Empowerment podcast (formerly Autism Empowerment Radio) relaunched on December 30th, 2020, and is better than ever!

Spectrum Life Magazine recently checked in with Autism

John: We were actually pretty prolific considering all the other things the nonprofit had going on. Autism Empowerment was founded on June 3rd, 2011. Autism Empowerment Radio launched June 14th, 2012, and Autism and Scouting Radio launched July 6th, 2012.

What was your format?

Karen: At the time, we were using a platform called BlogTalkRadio, and we were doing all our shows live with no editing. Most of our shows were interview-based where guests would call in. Although we’d prepare them in advance with proposed questions, the interviews themselves would develop organically from the answers people gave.

That could be pretty stressful, I’d imagine. What if the guest didn’t show up or didn’t want to talk?

Karen: Fortunately, we didn’t run into that very often. We tried to build a relationship with our guests ahead of time so they felt prepared. Many autistic people, myself included, are not big fans of talking on the phone. Knowing that, I always had a script prepared in advance with plenty of outs in case there were unforeseen circumstances like dropped calls or phone fright.

John: One thing we couldn’t prepare for back then was sound quality. Since our new podcast is recorded in advance, that’s going to be a huge improvement. We’ll also be able to edit out things like dead space, dogs barking, toilets flushing, etc.

Empowerment co-founders Karen and John Krejcha to learn all the details.

Congratulations! This has been a long time coming!

Karen: Thank you! We are ecstatic to be in the studio again.

There is so much to share.

John: It’s been what? Six years since our last episode?

Karen: Pretty close. Autism Empowerment Radio (which I hosted) had its last episode on December 8th, 2014, and Autism and Scouting Radio’s last episode (which John hosted) was February 27th, 2015.

How many episodes did you produce?

Karen: Autism Empowerment Radio had 89 episodes and Autism and Scouting Radio had 48, so we had 137 shows between the two. A few of those were crossovers and replays.

We were happy with the number of shows we produced at the time because we knew very little about podcasting back then. I recently learned at a podcasting conference in 2020 that most podcasts never produce more than 7 episodes.

With all those shows, why did your podcasts stop?

Karen: We both regret stopping. From the statistics we received, we had over 150,000 listens between the two programs, and the feedback we had received within the autistic and autism communities was positive. Unfortunately, we had no good way to sustain the podcast because Autism Empowerment was heavily involved in a variety of community outreach programs.

John: There is a learning curve to the nonprofit world.

Coming from a neurodiverse family, Karen and I co-founded Autism Empowerment as a calling to serve people within the autism and disabilities communities. We were involved in a lot of different projects at the time that needed our attention. Although rewarding, the more we became involved in local outreach, the less time we could dedicate to live shows. People often don’t realize the amount of planning and work that takes place behind the scenes of a nonprofit organization. We found over time that we were spreading ourselves too thin and something had to go.

Karen: We didn’t want it to be the podcast. But we had to balance supporting our community with sustaining our Continued on page 14 www.spectrumlife.org

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Photo credit: Ryan Krejcha

Autism Empowerment Podcast, continued from page 13

organization’s key programs. During that time period, we said “yes” to many requests to do in-person training and host support groups and special events. We intended to have a brief hiatus from the podcast, grow the organization (hopefully hiring people so we’d have extra support) and then bring it back when we had more resources.

John: And then came an opportunity with Spectrums Magazine. Karen had been on the Editorial Advisory Board since the magazine’s inception in 2013. When the founder, Courtney Freitag, decided to sell the publication, she came to us first to see if we wanted to keep the magazine going.

Karen: It was a great publication, so of course we wanted it to continue and not have our community lose this great resource. I mean, how difficult could it be to run a magazine, right? (Kidding!) Autism Empowerment acquired and began publishing Spectrums Magazine in 2016, and we changed the name to Spectrum Life Magazine in 2018. Although we had planned to bring back the podcast during that time, we just didn’t have the bandwidth.

Why is Autism Empowerment relaunching its podcast now?

Karen & John: The wrath of 2020! (Laughs) John: With all the challenges that the COVID-19 pandemic has brought, we’ve had time to reflect and assess our personal priorities as well as what strengths and talents Karen and I want to bring to Autism Empowerment and the people the organization serves.

When Autism Empowerment’s support groups, social clubs, service projects, and special events had to shut down in March 2020 due to the pandemic, we felt sad, guilty, frustrated, and

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a whole range of emotions. We prayed a lot about what direction the organization should go. Then Karen became sick with COVID-19, and the next six months were kind of a blur.

Karen: Yeah, that was really rough. (See Karen’s article about her experience with COVID-19 on page 7.)

Throughout that ordeal, we were reminded that we were not equipped nor meant to be everything to everyone despite our best intentions and wanting to help as many people as possible. I kept having to tell myself to let go and give my concerns to God. Once I did, the next steps on our path became clear. Our experience has shown we’re quite resourceful at curating content from a variety of sources. Over the years, we’ve made many positive connections with self-advocates, parent advocates, educators, professional providers, foundations, and other nonprofits. We’ve partnered successfully with people from all walks of life and been part of many disability-related coalitions.

The Autism Empowerment Podcast and Spectrum Life Magazine give us positive venues to share what we’ve learned and to shine a light on the challenges, successes and strengths of others.

John: Autism Empowerment turns 10 years old on June 3rd, 2021. We have always felt called to expand the organization nationally. Both Spectrum Life Magazine and the podcast can be developed to reach national audiences.

The podcast is a great vessel for that expansion.

Who is the podcast targeted to?

Karen: Autistic adults, parents and caregivers, family members, educators, service providers, and allies. We’re essentially hoping to reach the same audience that would be likely to read and learn from Spectrum Life Magazine.

Continued on next page

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Autism Empowerment Podcast, continued from page 14 John: We’re all lifelong learners, so on a broad level, the podcast is for those who want to learn more about supporting themselves and those they love from a strengths-based perspective. We want people to come away from the podcast feeling welcome, accepted and hopeful. When we chose a podcast category for listeners to find us, we picked Education: Self Improvement as our first choice and Society and Culture as a second. We recognize the autism spectrum is diverse and will be including discussions that embrace a variety of perspectives.

Karen: We don’t expect to have all the answers or to be able to meet everyone’s needs but we do want to promote a culture of acceptance, enrichment, inspiration, and empowerment. We want people to know we “get” the ups and downs of an autism journey because it’s something we experience ourselves.

We’re all on a journey, and although the roads we take will be different for each person, we aim to meet people where they’re at, providing help, support, and motivation along the way.

How often will the podcast be produced? Who are the hosts?

Karen: At this time, we’re planning to have new shows released each Monday and Thursday. Our episodes are going to include a combination of interviews, insights, inspiration, and storytelling. There isn’t any set time length. Most of our initial shows will be around 30 minutes long.

John: It’s important to us from an authenticity standpoint that the Autism Empowerment Podcast be autistic-led and disability-led. Karen is going to be the main host and will do the majority of the interviews. I will be the co-host and will actively participate in shows where we discuss articles from past and current Spectrum Life Magazine issues.

You mentioned Spectrum Life Magazine. What is the tie-in there?

Karen: There have been many great stories and interviews in Spectrum Life Magazine over the years. We want to give our listeners and readers an opportunity for that content to be available in a different format. With the magazine, there is only a limited amount of space. The podcast will allow us to discuss topics in more depth and do complementary and follow-up interviews.

John: And what’s great about that is that we will be including Show Notes and transcripts of each podcast. Since the magazine only comes out quarterly (currently), these transcripts will allow us to share additional blog articles on the SpectrumLife.org website.

What kind of topics will you discuss?

Karen: Here is our initial thinking. Our magazine has articles in six featured sections: Advocacy, Lifespan, Recreation, Education, Health & Wellness, and Therapy. Although our primary readers are autistic individuals, parents, and family members, there is a lot of diversity on the autism spectrum, so we try to include something in each issue that will appeal to a broad audience. Of course, not every article will be of interest to every reader, but most people find at least a few pieces to gain value from each issue.

In the beginning, we expect many of our shows to have appeal to a broad audience. We’ll have quite a few interviews that share the great work that others do to support people in the autistic, autism, and disability communities.

It’s also important for us to do a deep dive on essential topics that come up frequently. That includes relationships, education, parenting, employment, housing, healthcare, advocacy, and safety. Many of these topics work well in a series format.

John: Yes. We’ve already had discussions about having Housing, Employment, and Advocacy as series sometime in later 2021. We really hope that people will subscribe to the show to help us gain more visibility.

Will you re-air past podcast episodes that might still be relevant?

Karen: Great question! Yes, we will. We need to edit and clean those shows up first but we will be rebroadcasting and doing updates on at least 20 episodes. Ones that immediately come to mind for me are interviews with autistic advocates Karla Fisher, Liane Holliday Willey, Stephen Shore, Jack Ori, and Jennifer Cook (formerly Cook O’Toole).

John: In addition to interviewing local and nationally known experts, we also had shows that highlighted services and supports provided by various autism and disability organizations. Some will need an update but it will be fun to mix old shows with new content.

How can we find the podcast?

Karen: Look for “Autism Empowerment Podcast” on Apple Podcasts, Spotify, Stitcher, Google Podcasts, Podbean, or wherever you listen to your favorite shows. Please subscribe! You can also visit our new website www.autismempowermentpodcast.org for episodes, Show Notes, and transcripts.

Is there any other way to support the podcast?

John: Yes! Please subscribe, share with your friends and colleagues, and if you like what you hear, leave us a review so more people can find the show. Being a nonprofit, we can use financial support too. We have a Patreon account for the show and are also seeking sponsors and advertisers.

For more information, visit our website or email us at podcast@autismempowerment.org.

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LIFESPAN

Pandemic from a Parent’s View We’ll get through this.

By Francisco Perez As I was kissing my 8-year-old daughter goodnight in April 2020, she asked, “When is this going to end, Daddy?

I want to go back to school.”

I’ve heard the question hundreds of times since, from both my daughter and my 12-year-old son. Both are autistic.

As their father and provider, I want to give them a correct answer. I don’t want to keep saying “a little while longer” or “it doesn’t look like this year” or “we need to wait until people get their vaccines” because none of these answers are satisfactory. As their father, I want to be able to fix things and make it all better. The truth is that I just don’t know how. This pandemic has me stressed.

I started writing in a journal last summer. I wanted to document all the things going on in Portland, Oregon and the world around us. I would never have predicted I would be writing about COVID-19, protests, marches, wildfires, unemployment, mask mandates, elections, school closures, and failed distance learning attempts. I could never have predicted that I would lose my job and that my 15-year marriage would be strained to the brink. I thought both were rock solid.

I lost my job in May. I worked as a supply chain consultant in the restaurant and food services industry and my job required a lot of West Coast travel. Many of my colleagues and clients had to do mass layoffs, struggle to figure out the Paycheck Protection Program (PPP) loans, or shut down their restaurants completely. There were more expenses for those who stayed in business and more hours worked to earn less pay. The PPP helped some temporarily, but I don’t think anyone thought these shutdowns would last so long. So much for the “incredible 2020 vision” we all had. Can I say here that the year sucked? (Not language I normally use but the alternative from my journal entries is not suitable for a family magazine.)

At the time I began writing, it was an outlet to relieve stress. My intent was not to share what I wrote with anyone. I thought maybe I would share for posterity’s sake in the future, but for the most part, my writing was really negative and depressing. In the beginning of 2020, I thought of myself as a pillar of strength, provider, optimist, and our household’s spiritual leader. By October, I felt like none of these things. I was cynical, grumpy, annoyed, and short-tempered. I was exercising less and eating more. I saw myself as an abject failure.

My wife tries to see the good in any situation. It’s one big reason why I love her. Although she has expressed that she often worries she isn’t doing enough, she’s a great mother and devoted to making sure our children feel accepted, supported, and loved despite what the world

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throws at them. There have been hardships. Our son did not speak until he was six. Besides being on the spectrum, our daughter has had extended stays at Doernbecher Children’s Hospital. Through it all, my wife has been solid and resourceful and a real prayer warrior.

But even the most resourceful people can come to their tipping points. My wife’s tipping point was trying to balance distance learning with two kids in different schools and working remotely. (She took on a part-time job after I was laid off and couldn’t find work.) Our son started middle school in the fall and had never navigated having multiple periods and teachers before. It had been over 25 years since my wife and I had been in middle school, so it wasn’t exactly fresh in our minds.

Even before the pandemic, we anticipated 6th grade would be challenging. We figured the big issues would be school lockers, changing for gym class, making new friends, and staying on task. Now it’s logging into class daily, trying not to be distracted by his sister or the dog, and turning in schoolwork that’s complete. Our son was used to having a paraprofessional in the classroom to gently keep him on task. That’s non-existent. Having my wife or I try and sit next to him to help if the web camera is on is a total no-go as he doesn’t want to be embarrassed since none of the other students have their parents there.

I know our kids and their teachers are trying hard but I think it’s fair to say that almost all of us are frustrated. This is not an ideal or healthy situation mentally, emotionally, physically or financially.

It frustrates me when people do not take this pandemic seriously. Just because a person may not closely know someone who has gotten seriously ill or died from COVID-19 doesn’t mean it isn’t happening. Over 300,000 families in the United States lost loved ones due to COVID-19 in 2020 and yet strangely, there are still naysayers. My wife and I stopped going on Facebook because there was so much divisiveness, blaming and ego-driven selfishness showing up in our timelines.

I have family members across the country who are healthcare heroes risking their lives every day. My wife and I have older parents who are in high-risk categories.

Except for Zoom calls, we haven’t been able to see them in almost a year. Our kids adore them and that has added to this pandemic stress too, the fear of losing a parent or grandparent to coronavirus.

I don’t say all of these things to complain or say woe is me.

I am very cognizant that so many people out there have it worse and that our family is blessed to have a roof over Continued on next page

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Pandemic Stress from a Parent’s View, continued from page 16

our heads and decent health. We did visit the food bank a few times. We did apply for utility assistance. We did charge up on our credit cards more than we would have liked while waiting for unemployment money to come through. Doing these things, I initially felt ashamed. I was embarrassed to admit my pride was hurt when I lost my job and unable to find a replacement.

As I alluded to earlier, by the time October 2020 rolled around, I felt lower than I had before. Pandemic stress had me burned out. Because I felt like I was letting my kids and wife down, I spiraled further into depression.

And then something happened where I started to feel just a little bit better. My wife and I started online marriage coaching and counseling. Instead of quietly sulking and venting into my journal, I began to open up to her about my feelings of helplessness and inadequacy over losing my job.

She was able to share that she felt overwhelmed trying to balance parenting and working from home, and guilty about not answering all the many teacher check-in emails. We both admitted we were sad that despite being under the same roof all the time, we hadn’t shared intimacy in months. Although we were together all the time, we were both feeling lonely.

When we acknowledged our feelings and actively listened to each other again, things started to improve. We were more open, gracious, patient, and forgiving of each other, our kids, and ourselves. The pandemic hadn’t improved but somehow, things were better because we were able to rekindle our relationship with each other. Our faith became stronger.

We prayed more often. Our kids joined in more often. We realized that the pandemic was not in our control but we could choose our reactions.

My wife now writes in a journal too. She also finds it therapeutic. She was the one who encouraged me to share this. Life right now is messy. It’s okay to accept that and then try to do something to make it better.

This isn’t a fairy tale. The pandemic is still here. No one will be getting back to normal soon unless it is a new version of normal. So in the meantime, what we’re doing in our family is practicing gratitude and taking one day at a time.

We can’t change things by worrying; instead we will focus on appreciating what we do have and giving ourselves latitude and forgiveness when we slip. We’ll get through this together.

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recreation INCLUSIVE WAYS TO HAVE FUN

IN THIS SECTION Friendometry............................................................................................ 20 Ballad of the Bluerock.......................................................................... 22

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RECREATION LIFESPAN

Friendometry A Friend Finder for Kids

By John Krejcha Childhood loneliness can have lifelong consequences.

Children who do not have friends are at higher risk for anxiety and depression as they get older, which may lead to lifelong emotional struggles. Even having one friend can provide benefits that result in higher self-esteem, self-confidence, and self-worth.

Finding and keeping friends can be hard for many children.

Kids on the autism spectrum often have challenges with social interactions, so making initial contacts and maintaining those relationships can be extra difficult. Parents often want to help but aren’t sure where to find good matches for their kids. Friendometry looks to address this challenge.

Spectrum Life Magazine recently connected with co-founder Dr. Daniel Kriz to learn more about how Friendometry supports youth friendship.

Tell us about Friendometry.

We believe that there’s a friend out there for every child!

We want to help make that connection!

Friendometry was founded by myself, a Pediatric Neuropsychologist, and my lifelong friend, Tucker Lemm. We teamed up in 2018 to combine our expertise. Friendometry was created because of the clear problem that childhood loneliness is on the rise (even before COVID-19) and that children without friends can suffer long-term problems. Our site was designed to fill a gap in efforts to combat childhood loneliness.

Friendometry is a place online where parents can find and meet other parents in their geographical area who are also seeking friends for their children. For one reason or another, kids generally have had some difficulty either making or keeping friends. Many children participating are on the autism spectrum, but this is not a requirement. All parents are welcome to join if they are seeking friendships for their children.

Friendometry works similar to a dating website, except that it is matchmaking for friends, not for dating. Children are not allowed on the site; it is only for parents.

How did you come up with the name Friendometry?

Well, I wanted a name to capture my mission of making friend connections for youth that are struggling to find friends, and “ometry” uses angles and connections.

Friendometry is about making friend connections.

Do you have a personal connection to someone on the autism spectrum or with other learning differences?

I have been working with the neurodiverse for close to 20 years. In my work in pediatric neuropsychology, I became

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accustomed to troubleshooting a similar dilemma with many of the families I worked with that had a child on the autism spectrum – many of them did not have a friend. For close to 10 years, I would brainstorm with parents about ways to find friends for their children when more naturalistic ways had not been working. I saw the impact this challenge was having on the children, and their parents, for that matter.

This is what motivated me to create Friendometry – to create a platform to make this easier.

What age range do you work with?

Professionally, I work with kids ages 3 and all the way up through young adulthood. Friendometry is for youth ages 3 - 17.

How does Friendometry work?

Friendometry is completely parent-driven. The parent starts by creating an anonymous strengths-based profile of their child’s personality characteristics and interests. This creates a profile of their child, which shows online to others as anonymous. Then, the parent searches their geographical area, and the site locates other children in the area.

The parent can then review other children’s profiles, select a potential match and begin messaging other parents internally through the website (still anonymous) until both groups of parents want to take that relationship “offline.” The parents have complete control and discretion, so it is safe and effective.

They can then set up get-togethers (usually supervised by parents) or Zoom meetings given COVID limitations.

What kind of safety measures are part of Friendometry?

We have a locked-down secure site. It is strictly for parental use, so parents have complete control, and we do require a credit card on file to be able to track users in the rare Continued on next page

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Friendometry, continued from page 20 circumstance something unusual were to happen (although nothing to date has happened that required this).

How many people are currently part of the Friendometry network?

We currently have hundreds of users. Many of the users are in Oregon in the Portland Metro area, Salem to Eugene, and Central Oregon. However, we do have users all over the world.

How have things changed with the COVID-19 pandemic?

We have actually noticed an increase in usage. There are less naturalistic ways to find friends now. This service fills a huge gap in need for our youth. Some parents are hesitant to get together given COVID-19, but they have had introductions and interactions through Zoom or Facetime to help get their children acquainted. We have some kids who have been connected who now play Roblox together. I would say this is an excellent time to start using Friendometry.

All the parents on the website are in a similar position as you. They want the best for their children and know how important friendships are in their development. If your child is having difficulty finding or making a friend, this website was created for you!

What are your goals for the future for Friendometry?

Our mission is to lessen the burden of loneliness on the individual, communities, and society as a whole. All children deserve a friend. It is a basic human need. It is 2021, and it is now commonplace that millions of adults are finding companionship online. It is time to allow the internet and technology to help children find a friend. We want Friendometry to help millions of children worldwide.

Join the movement!

Would you share a story about clients you have helped?

The first time I heard that a child with autism made a friend on my site made all of the time and resources I have put forth worth it! One parent recruited youth off of Friendometry to have a social club for the kids, which is still going. It doesn’t work for everyone, but we encourage people to get on there and try. If you get on there and don’t have luck initially, your profile will be there for others to find you when they sign up!

Any tips for success in finding new friends?

I always recommend more naturalistic ways of finding friends like school, recreation, etc. However, as our families know, it is not always that easy. Get on to Friendometry and start connecting! Other parents are on there for the same reason.

How much does it cost?

It is only $19.99 per year, which covers website maintenance.

We give it away for free whenever possible, though.

Readers of Spectrum Life Magazine can use the free code: SpectrumLife to get their first year free!

How would somebody get started to determine if this would be something for them?

You can connect with Friendometry through our website: www.friendometry.com. We also have a Facebook page: www.facebook.com/friendometry.

What else is important for Spectrum Life Magazine readers to know?

• Friendship increases confidence, self-worth, sense of belonging, and overall well-being.

Sheriff John “Friendly” Krejcha is co-founder of Autism Empowerment and serves as Programs Director. He serves on the Editorial Advisory Board of Spectrum Life Magazine and is a guest host for the Autism Empowerment podcast. John is married to co-founder Karen Krejcha and is the father of two amazing children and their feisty cat, Zula. While John is the only one in the family

• Friendships can prevent anxiety and depression.

who is not on the autism spectrum, he identifies as a neurodiverse

• Friendships can lower levels of mood challenges.

and loving ally.

www.spectrumlife.org

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RECREATION LIFESPAN

Ballad of the Bluerock Will Joel Suzuki save the Universe?

By Karen Krejcha

Author and musician Brian Tashima released Ballad of the Bluerock, Volume Five in the Joel Suzuki series in late December 2020. Spectrum Life Magazine recently spoke with Brian to get the behind-the-scenes scoop on Joel’s latest adventure!

Brian, thank you so much for sitting down with us again!

Congratulations on Volume Five!

Thanks! Always happy to do an interview for Spectrum Life Magazine.

For readers not familiar with you or the Joel Suzuki series, please share a little of your backstory.

Years ago, my son—who is on the autism spectrum and was into reading fantasy novels like Harry Potter, Percy Jackson, and The Hunger Games—came up to me and asked me to write him a book. I’m a musician and had dabbled in creative writing before, but I’d never completed an entire manuscript, so I took his request as a good opportunity to not only do something cool for him but also to check an item off my bucket list as well.

So from there, I decided to create a main character whose autism was not an obstacle to be overcome, but rather was the source of his magic, as a way of giving my son a literary hero and role model that he could find inspiration from. After I finished writing what would become Volume One of the series, I realized that it would be good for me and my son to share this story with the greater autism community and general readers as a whole, to help spread a message of positivity and acceptance.

Tell us about the progression of the series.

For the most part, each volume in the series is a complete, self-contained story, but together they make up a larger arc where the tone grows darker and the stakes get higher as it goes along. While you could start the series in the middle, I think readers would get the most enjoyment out of it if they started from the beginning.

What can readers expect in Ballad of the Bluerock? I heard it’s pretty fast-paced and does not take place on Spectraland?

That’s correct, this is the first book in the series that takes place almost entirely on Earth and not in Spectraland (an island on a different world where music is magic and autism is a superpower). There’s still a little bit of the music-magic element in it, but for the most part, it’s very different from the four books that preceded it. At this point in the overall story, Joel needs to complete his Wavemaker training in Spectraland in order to save the day before it’s too late, but unfortunately he’s been banished to the Bluerock—Spectraland’s name for Earth—and he has no idea how to get back to the other world.

So, this book is about him trying to do just that.

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Multiple characters in your series identify as on the autism spectrum. Tell us a bit about the major players and your inspiration behind creating them.

The two main protagonists, Joel and his costar Felicity Smith, are both on the spectrum. The primary antagonist— whose identity I won’t reveal, to avoid spoiling it for anyone who hasn’t started reading the series yet—is, as well. The idea behind having both the good and bad guys identity as autistic was to show that being on the spectrum shouldn’t pigeonhole you one way or another—you can be good, bad, or somewhere in between, just like anyone else. Regardless of ability, we’re all people.

I’ve noticed each of your book covers is a different color.

Is this intentional?

Very much so. When I started planning this series years ago, I discovered that Isaac Newton (who is rumored to have been autistic himself) felt there was a connection between the colors on the visible spectrum of light—the colors of the rainbow, basically—and musical notes. In other words, red was linked to the pitch of D, orange to E, and so on. So, being that my series has a lot to do with autism, music, and waveforms, I decided that it would be perfect to have each book be a color on that spectrum.

How long does it generally take you to write a book?

Has this changed over time?

On average, the process takes about two years from start to finish. I wrote the first draft of the first book in four months, then spent a year or so revising and editing it. The second book took a bit longer because I tried to write it without an outline and ended up having to throw away about half a completed draft. Now, since I know that I need to work from an outline, the process goes much smoother as a result.

How far in advance do you plan out the next book in your series?

I’ve had the overall story arc planned out from way back in the beginning, along with the checkpoints that I would need to hit along the way. All the stuff that happens in between gets planned out mostly during the outline process before I start the actual writing, and it always changes as I go along. Like with this new book, for example, I had an initial concept where Felicity’s Aura-spirit would be inside of a cat, requiring her to be lugged around in a pet carrier most of the time. As amusing as that idea was, it eventually ended up on the cutting room floor.

When we last spoke, you had also been writing screenplays and comic books. Do you have any upcoming plans for other works that feature autistic or neurodiverse characters?

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Ballad of the Bluerock, continued from page 22

I actually have a completed screenplay right now that features an autistic character who isn’t the main protagonist like Joel, but still plays an integral part in the story. On the surface, it’s a rom-com with a baseball-related setting, but some of the main underlying themes are acceptance, empathy, and looking beneath the surface to try to better understand one another.

One fun thing about your books is that your real-life nerdpunk band, Second Player Score, occasionally has a cameo.

All my projects take place within the same continuity, with Second Player Score being the interconnecting tissue. We don’t play much of a role in the stories themselves, but we’re sort of like how Stan Lee was to the Marvel Cinematic Universe, showing up randomly in different times and places.

As a creative artist, how were your projects and performances impacted by COVID-19 and the events of 2020?

The pandemic definitely slowed things down a bit. For my band, we had already decided to cut back on our live performances, but the period when we weren’t able to get together in person prevented us from preparing to go back to the studio to record new music. As for my books, I wasn’t— and still am not—able to do the in-person signing and reading events that I enjoy, but with the writing itself, that’s always been a solitary, at-home experience for me anyway, so that wasn’t affected as much.

You write and perform music. Joel writes and performs music. Is there a possibility that there will ever be an album to accompany any of your books?

Oh, for sure. Most of my band’s albums already have creative works attached to them, so it would only be natural to do one for the Joel Suzuki series. Or, I might eventually try to find a young band—hopefully with autistic members!— to record an album as “Joel Suzuki and the Wavemakers.” I love doing meta stuff like that. I also have ideas for movie soundtrack music in case Joel ever makes it to the big or small screen, along with some musicians and composers that I’d like to work with on that.

You have a free fan club for the series called The Wavemaker Order. What does it include and how can people join?

Members get access to the Wavemaker Archives—a special page on the Joel Suzuki website that contains exclusive

content, like deleted scenes, custom artwork, and more.

To join, you just have to enter your email address at joelsuzuki.com/join.html.

Autism Empowerment (publisher of Spectrum Life Magazine) recently relaunched our podcast. You first interviewed with us about Secret of the Songshell (Volume One) in June 2012. It’s time for an update. Are you game?

Definitely!

Speaking of podcasts, you have one of those too! Does the Joel Suzuki series ever make an appearance?

It’s a podcast produced by my band called Second Player Speaks where we talk about punk rock bands and pop culture stuff, and while we try to mainly focus on other people’s works, the series has been mentioned once or twice, I believe.

Where can readers find your books?

They’re available online and at select retailers around the Pacific Northwest. The best place to start would be to check my website at www.joelsuzuki.com.

What else would you like readers to know?

I donate one dollar from each sale of a Joel Suzuki book to Autism Empowerment, so if you support the series, you’re also supporting a great cause.

Thanks so much, Brian. When can readers expect Volume Six? If I’m able to stick to my two-year schedule, then we’d be looking at late 2022 or early 2023. But hopefully I can have it out sooner than that!

Karen Krejcha is the co-founder of Autism Empowerment, where she serves as Executive Director. She is the Editor of Spectrum Life Magazine and host of the Autism Empowerment Podcast. Karen was diagnosed on the autism spectrum in her 40s, after the diagnosis of her two children. She has been married to John for over 28 years and is devoted to promoting a culture of acceptance and empowerment within autism communities and worldwide.

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education

IN THIS SECTION Recovery Services in the Age of COVID......................................... 26 Permission to Fail .................................................................................... 28 Autism, Social Greetings and Rhetorical Questions................. 30

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Photo credit: Katerina Holmes

KNOWLEDGE TO EMPOWER FAMILIES AND INDIVIDUALS

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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 staff including physicians, nurses, and psychologists who are knowledgeable about the diagnosis and latest in treatments and therapies.

Parents and guardians also offer their perspective and share stories as guest contributors. Topics range from young adult transition to sibling support to new research findings to our perspective on the latest news and information about autism.

2. Autism 101

Available in-person at Seattle Children’s or by live-streaming.

Autism 101 is a 90-minute presentation providing information and support for parents and families of children recently diagnosed with an autism spectrum disorder (ASD).

Topics include up-to-date, evidence-based information about ASD, behaviors associated with autism, autism prevalence, treatments available and resources for families.

3. Autism 200 Series Available in-person at Seattle Children’s or by live-streaming.

Watch past lectures on our website or YouTube®.

Autism 200 is a series of 90-minute classes for parents and caregivers of children with autism who wish to better understand autism spectrum disorder. Classes are taught by faculty from Seattle Children’s and the University of Washington and other community providers. Topics include transition to adulthood, early intervention and school support.

Each class includes time for questions.

Learn more or register at seattlechildrens.org/autism or by calling 206-987-8080.

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EDUCATION

Recovery Services in the Age of C

VID

Looking beyond compensatory education

By Diane Wiscarson and Taylar Vajda

2020 was a challenging year for parents, educators, and students alike. During virtual learning, parents have stepped into the roles of teacher, paraeducator, accommodation designer, and a lot more. Most students are struggling with digital platforms.

Educators have tried to serve students effectively – particularly those with special learning needs. It’s no secret that this year simply is not as effective for student learning and progress, and some students will need additional help to catch up.

Before COVID, when a district failed to provide services for a student, those “make up” services were called compensatory education. In the age of COVID, there is a new term, “recovery services.” Unfortunately, these terms are already being used interchangeably, yet they are two distinctly different services.

It is important to understand the differences, as your child might be entitled to both!

Compensatory Education Compensatory education (or “comp ed” as it is commonly referred to) is intended to help fix a school district mistake – to help make a student “whole” again. Compensatory education is discussed when part of a student’s Individualized Education Program (IEP) has not been delivered, such as specially designed instruction (SDI) in a particular area, or related services, such as occupational or physical therapy.

Compensatory education generally arises in two ways – one informal, and the other, more formal. If a student’s IEP has SDI for reading, and the district failed to provide the reading SDI for a semester, the SDI can be made up by school district staff outside of regular school hours. The amount of compensatory education is usually determined by administrators, parents, attorneys, and/or advocates, and based on what can be agreed to by the district and the parents.

The second way comp ed arises is through a legal process.

This is either a due process hearing or state complaint, where a judge or complaint investigator will decide if a student needs compensatory education to make up for missed services.

For the student who did not get their reading SDI, a judge or complaint investigator could order reading tutoring as compensatory education. In another instance, if a student didn’t get to spend time with general education peers, a judge or complaint investigator might order compensatory education that includes social opportunities.

Comp ed is not a formula, and comp ed is not an IEP team decision. Comp ed is not even discussed at IEP meetings.

Instead, comp ed is determined outside of an IEP meeting, generally by administrators and parents via discussions and consideration of the specific situation and the individual needs of the student.

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Recovery Services Recovery services are NOT compensatory education, and are not to make up for something the district did not do, or did wrong. Recovery services are an entirely new concept, intended to help a student remain where they would have been if the pandemic school closure had not happened in the spring of 2020. Recovery services admit that a student is falling behind because of the pandemic, but that does not mean the district has done something wrong.

Unlike compensatory education, recovery service amounts are to be decided by each student’s IEP team. The IEP team needs to consider three things. First, did the student regress on any of the IEP goals? For instance, for a reading goal, if a student was previously able to read 80 out of 100 sight words, but can now only read 40 out of 100, that shows regression.

Second, has the student progressed on the IEP goals? Using the same reading goal example, assume that in March of 2020, the student could read 80 of 100 sight words. By January of 2021, the student is still only reading 80 sight words. This does not show regression since no skill was lost, but it does prove that the student is not making meaningful progress on the goal.

Finally, if the student is not really “attending” school virtually, or turns the screen on but is not engaged, the IEP team should consider if additional supports are needed to re-engage the student in school. For example, if a student has become so dysregulated from being out of a physical school building that they cannot sit and work, then they may need additional help to start school again.

If the answer to any of the questions above is “yes” this indicates that recovery services should be considered!

Timing of Recovery Services Parents should request an IEP meeting to review recovery services around the time students will return to brick-andmortar school buildings. The IEP team, which includes the parents, will determine whether a student needs recovery services. The IEP team should consider whether the child’s learning can be restored through the typical IEP process, or whether other processes or services are necessary. For example, the student might need outside recovery services – to be provided after school, during breaks, or on the weekends. These are all questions that the IEP team will have to discuss and answer. There are no formulas to follow to figure out recovery services, as this is all new to everyone – school districts, parents, and IEP teams.

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Recovery Services in the Age of COVID, continued from page 26

Parents must be a part of these discussions, and parental input will be important now more than ever. IEP teams will have to decide if recovery services are necessary. If so, then the IEP team will have to decide what service the student will receive, including the amount and how the service will be delivered. Parental input into these discussions is critical, as not only do you know your child intricately, but you have also been their primary educator for almost a year now.

What should parents do to ensure their child’s needs are being met?

Finally, parents should take careful note of the services their child receives during the school closures because of the COVID pandemic. This is where the difference between compensatory education and recovery services matters. If your child was receiving all their IEP services and accommodations, but distance learning simply wasn’t effective for them, they may be entitled to recovery services. However, if your child simply wasn’t receiving services they are entitled to, they may be eligible for compensatory education.

For example, imagine a student was supposed to receive 30 minutes of speech-language therapy services per week. During distance learning, they did not receive any speech services at

Conclusion These are hard questions, and it has been a hard past year for everyone. The most important aspect to remember with recovery services is that the IEP team decisions are based on an individual student’s needs. And, right now, parents have the most accurate information about their child’s needs, including in the “school” setting!

Photos courtesy of Wendy Mayo

Document what you can. If your child cannot learn on a computer, keep a record of what is (or is not) happening. This can just be a short log, where just a note or two is jotted down each day. For example, if your child logged on to their general education science class but only stayed five minutes before becoming dysregulated and exiting, write it down. This log will help at a later date to determine if your child was engaged with the learning process.

Read your child’s IEP progress notes. While they are always important, IEP progress notes matter even more during the pandemic closures. IEP progress notes should tell parents whether their child has progressed, regressed, or stayed the same. This information will help the IEP team decide whether a child needs recovery services.

all. That is an error or a mistake on the district’s part, so that student may be eligible for compensatory education.

On the other hand, imagine that the same student was receiving 30 minutes a week of speech-language therapy over video conference. This model may not have been as effective for the student – maybe the student didn’t make great progress – but it wasn’t an “error” or a failure on the district’s fault. This student may not be eligible for compensatory education, but they may be eligible for recovery services.

Diane Wiscarson and Taylar Vajda are attorneys with Wiscarson Law, the only firm in Oregon with a primary emphasis on special education law for families. Since its founding in 2001, Wiscarson Law has shepherded thousands of Oregon and Washington families through the region’s public schools and education service districts on behalf of their special needs children. Find more information at wiscarsonlaw.com.

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EDUCATION

Permission to Fail

Priorities reassessed

By Aaron Blackwelder

As a teacher, I have cared about nothing more than my students’ learning. However, distance learning during COVID-19 has exposed the problems with my emphasis and

to schedule his own learning to match the time that best meets his needs. But because anxiety runs comorbid with his autism, and the lack of academic supports school usually offers, his anxiety began to take control early in the school year.

My son got behind in his classes rather quickly. Not because he was incapable of doing the work or understanding it nor was it because he was lazy or distracted by video games.

Rather, it was his anxiety.

He would not turn work in because he worried that it did not meet his expectations of quality. This caused him to feel guilt and shame because he was getting behind in his work and his grades reflected this.

He was failing multiple classes and worried he would never catch up.

I sat down and helped him get caught up. Over the course of a couple of weekends, we completed several assignments for math, science, history, and English. We both felt confident his grades would come up and he would start turning work in on a more regular basis.

it was my 15-year-old son who helped me to see how my priorities were wrong.

My wife and I enrolled our youngest son, a sophomore in high school, into an honors English class for the 2020-21 school year because we felt his insightfulness and out-of-the-box thinking needed to be both developed and challenged. Our son loves to read, analyze, and critique ideas and narratives. He can hold deep conversations about plot and character that gets me, a 23-year English teacher with a BA in English Literature and a Masters in Education, thinking about stories differently. I thought, “If he impresses me, he would thrive in an honors environment.”

Under normal circumstances, maybe. But distance learning in the midst of a pandemic is something different.

As a teacher, I was excited about the start of the new school year. I embraced the idea of teaching via distance learning as a new challenge that would make me a better teacher when life returned to normal. I know my son felt the same way. He loved the idea of not having to be around people and being able

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The following week, I checked his grades in Skyward (the online grade book and learning management system used by my son’s school district) to find that he was no closer to passing his honors English class than he was before we did the work because all the work he completed was given 50% credit due to being late or being unsatisfactory. This crushed my son and it crushed me as well.

I scanned his Google Classroom for his missing assignments and discovered that he had been given 63 assignments in the honors English class the first 10 weeks of the semester. This is more than 6 assignments a week and more than 1 per day.

His school scheduled synchronous classes (classes that met live with the teacher) twice a week for 40 minutes. So, he was getting over 1 assignment for every 12 minutes and 40 seconds that he was with his teacher.

To be fair, a majority of the assignments were short and, for the most part, built on one another. These were assignments that could be completed in about 5-10 minutes. But to a child whose anxiety can be debilitating, it would take him about 30

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Permission to Fail, continued from page 28 minutes to attempt the assignment, reading and rereading the directions, 5-10 minutes to complete them, and then another 20-30 minutes to worry about whether he did it right or not.

So, a short assignment turned into something that took him about an hour to do. Multiply this by 6 and add the hours where he was so overwhelmed that he couldn’t even do school, and you have a kid failing and feeling worthless.

Now, I know the default at this point is to blame the teacher. I agree that 6 assignments a week is a lot and, as a teacher, I would never do this. However, I believe that this teacher was doing what she felt was best for her students. Her assignments helped to scaffold learning in an attempt to make the learning outcomes more accessible. She would meet with her students outside of class time and tutor them. She would respond to emails with an attitude to serve. She was doing her best and I think she is amazing and I appreciate her investment in our children.

Rather than blaming the teacher or pushing my son, my wife and I decided to understand that there really wasn’t anyone to blame for this situation. We placed our son in honors with the best intentions. The teacher created her assignments with the best intentions. My son made a strong effort to engage. This was simply a situation that was out of everyone’s control.

My wife and I discussed many things to help our son. We talked about homeschooling or finding an alternative school.

We met with his caseworker to try to resolve things. We knew that pressing the school, the teachers, and my son was not going to change how my son was feeling. He was overwhelmed and feeling helpless. We decided to take a realistic and drastic approach.

When I was a sophomore in high school I failed my 10th grade English class. I loved my English teacher and enjoyed the class.

However, she went out on maternity leave, causing me to feel abandoned by her. Now, this wouldn’t affect most kids, but being an adolescent whose parents were newly divorced, this was devastating. The substitute did his best, but he was no replacement. I was shut down. And because of that, I took the F. The following year, I had to make up the credit and took an independent reading class that I loved. I got to sit quietly at my desk and read. I read so many Stephen King books that semester that I could predict the ending halfway through the book. I loved it. Now, 34 years later, I am an English teacher, a nominee for Washington State Teacher of the Year, a Washington English Teacher Fellow, I founded Teachers Going Gradeless, and have an educational podcast where I have interviewed several State and National Teachers of the Year. I have conversations with educational influencers and

have spoken at Illinois State University and at the European Distance and E-Learning Network’s annual conference. In spite of failing sophomore English, I think I turned out okay.

My wife and I decided that we needed to give our son permission to fail his class. We told him that he no longer needed to show up or do any of the assignments. We felt, at this time, his mental health was more important than a class credit. When we sat down with him to tell him, he was surprised and saw a weight lifted. His entire demeanor changed. He looked relieved.

I contacted the school to let them know this was our decision.

I learned that he had to continue to be enrolled in the class because if we unenrolled him we would be responsible to find a way for him to earn that class credit. But if he failed the class, the school would provide the means for him to make it up.

I am not advocating this be the path all parents take at this time. What I am advocating is to know your child and how they are handling the pandemic and distance learning. I am advocating for teachers and schools and that they are doing their best in a situation that is out of their control. I am advocating parents accept that this situation is temporary and what happens academically today will not hurt your child 30 years from now.

My wife and I will figure out our son’s credit. He may have to do summer school or take on a credit recovery in addition to his regular load his junior or senior year. He may even need to graduate a little late. These are not bad things and will not limit his potential. What is important to me and my wife is that our son feels loved, honored, and free to be who he is.

Since making this decision, I have been spending more time letting my students know that I care about their well-being.

I’ve been scheduling regular conferences with them to either tutor them or just listen to them and let them know that we will get through COVID-19 and distance learning together and when we do, we will be better people because we survived.

I can say that distance learning is not good for our kids. Kids need to be in school. However, this need has to be put on hold because sending them to school right now is not worth the risk to our community. So, in the meantime, we need patience and understanding. We need compassion and we need to make an effort to make human connections. We need understanding and we need to grant everyone the permission to fail because 30 years from now that failure can become an opportunity.

Aaron Blackwelder teaches high school English and coaches boys’ and girls’ golf in Southwest Washington. He is the co-founder of Teachers Going Gradeless, host of the podcast Beyond the Curriculum, and the educational contributor to Spectrum Life Magazine. Aaron is a Washington State English Teachers Fellow, was nominated for Washington State Teacher of the Year in 2019, and is a five-time golf coach of the year. Aaron is a husband and father of two boys on the autism spectrum, who inspire him to become the teacher who meets the needs of all students.

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EDUCATION

Autism, Social Greetings and Rhetorical Questions

By Judy Endow

Autistic people may not automatically know how to respond to rhetorical social questions such as “How are you?” or automatically reciprocate in social pleasantries such as “Good morning.”

This is not because they are rude, obnoxious, don’t care, or any of the other assumed reasons people attribute to this behavior.

Instead, it is because all social information (often referred to as the “hidden curriculum”) is not automatically picked up and used by a person with an autistic brain. The autistic brain simply works differently. Even so, autistic people can learn those things their particular brain hasn’t allowed them to pick up automatically.

“Good morning” “How are you?”

Example: I supported a 6th grader at school for an hour a day as he entered, checked in at the office, and went to his locker.

I did a one-on-one “check-in” time with him each day before he left to go to his first classroom. Each morning when Loren arrived, I would say, “Good morning, Loren.” Loren would either remain silent or say, “Shut up” or “I know that.”

As we walked down the hall to his locker, I would tell him it was nice to see him and ask, “How are you?” Loren either would remain silent or give me a detailed rundown of all his scrapes and bruises, both current and from years past!

Once I realized his autistic brain had not picked up the hidden curriculum information regarding social greetings and rhetorical questions, I set about directly teaching this to Loren.

“Shut up” “I know that”

1. I drew a chart on a piece of paper with columns labeled Social Greeting/Question, Expected Responses, and Unexpected Responses.

2. I wrote in the Greeting/Question such as “Good morning” and “How are you?”

3. Next, blue index cards were used to write possible expected responses such as “Good morning” and “I am fine. How are you?”

4. Yellow index cards were used to record each unexpected response such as “Shut up” and “Go away.” A blank card was used to indicate no words spoken.

Loren watched as I made the cards and put them under the columns of Expected Responses and Unexpected Responses.

He studied this over, then removed the cards, mixed them up and announced, “I’m doing it myself this time.”

During his first few tries, Loren wasn’t sure where to put the cards so I placed a blue card above the Expected Responses column and a yellow card above the Unexpected Responses column.

This gave him the visual hint – blue cards in the blue card column, yellow cards in the yellow card column. (It is important

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to ensure success when teaching unknown social information, thus the built-in color coding is something I often use. Loren was familiar with my color-coded systems, understanding that if he simply matched the colors he would have the correct answers.) As soon as the color clue was supplied, he could line up the blue and yellow cards according to color.

Each day Loren got another chance to line up the blue and yellow cards on the chart, studying over the information. Soon he told me he was ready for white cards. This meant he had mastered the lesson and no longer needed the color-coded hint. The words on all the blue and yellow cards were put onto white cards. Loren mixed up the white cards and sorted them onto the chart correctly! He knew the social information.

Now we needed to bring this information into everyday circumstances because even though Loren knew the information, he was not accessing it in real-life situations such as when the school secretary said, “Good morning, Loren.”

First we talked about how others feel and react when we give unexpected responses. Loren saw the benefit in giving Continued on next page

Autism, Social Greetings and Rhetorical Questions, continued from page 30 expected responses, but this discussion alone did not allow him to access the expected responses in real time.

Next, practice situations with the secretary were set up for the purpose of Loren using a new skill. We practiced five times in a row each morning. I carried the cards with me. When the secretary said, “Good morning, Loren” I gave him the blue cards, each with an expected response to this greeting. Loren could look through the few cards, knowing that any of the responses were okay – he couldn’t go wrong.

Fe Be a He ture re d !

This system worked well and within a few days Loren said he didn’t need the cards anymore. What happened next surprised us both! Without the cards, Loren was not able to access the information. We discovered the cards needed to be physically present, even though Loren did not use them.

I held the cards in my hand for a few days. Then, we left the cards in Loren’s locker. Sometimes, with a literal and concrete brain, this visual pairing with social information needs to be implemented with a gradual step down to successfully remove the visual.

In successive weeks we added more social greetings and rhetorical questions to our chart. Loren sometimes arrived at school telling me, “I’ve got another one for the chart!” He continued to use this visual system for the remainder of the school year to learn and sort out the information around social greetings and rhetorical questions. In addition, once mastered at school, Loren brought the visuals home where his family helped him bridge the new skills in expanded environments.

Additional Reading:

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Endow, J. (2019). Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology. Lancaster, PA: Judy Endow.

Endow, J. (2012). Learning the Hidden Curriculum: The Odyssey of One Autistic Adult. Shawnee Mission, KS: AAPC Publishing.

This article also appears on Aspects of Autism Translated at www.judyendow.com and was written for Ollibean in 2016.

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Judy Endow, MSW, LCSW maintains a private practice in Madison, Wisconsin providing consultation for families, school districts, and other agencies. Besides having autism herself, she is the parent of three grown sons, one of whom is on the autism spectrum. Her newest book, Autistically Thriving can be purchased at www.judyendow.com.

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health & wellness

IN THIS SECTION The Autistic Sensory System ........................................................ 33 Ask Spectrum Life...............................................................................36 Adapting to the New Normal ..........................................................38

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Photo credit: William Fortunato

DEVELOPING A SENSE OF WELL-BEING AND WHOLENESS

HEALTH + WELLNESS

The Autistic Sensory System Sensory Movement Differences and Patterns

By Judy Endow

People often do not realize the sensory system includes movement. While it is easy to understand physical movement because we can readily see it, it is harder to understand the many impacts of internal sensory movement that is part of autistic daily life. The unseen areas of sensory movement differences impact thoughts, perceptions, emotions, and memories.

Patterns become important to many people with autism. The patterns of movement outside our bodies often allow us access to our own ability to move, think, and participate in the social fabric that is the world we live in. I have less of a cognitive load when I can simply discern and hook into the movement and patterns around me. The following example shows the importance of contextual or environmental sensory movement patterns having to do with internal repeating thought and emotion patterns. The myriad of ways the autistic sensory system works both in our favor and against us seems to be largely unknown by most humans. Even so, I am not the only autistic who has articulated these things.

Personal Example: I use the movement of things outside of me for purposes of thinking and of processing feelings. Recently, autistic friends have let me know that most people in the world do not do this and yet, my experience tells me this is a rather common autistic phenomenon.

Thinking My thoughts are all in colors and pictures. Usually, there are sounds attached, but not always. To think, I need a way for the colors and pictures to move. When my sensory system is calm and integrated, the thoughts sometimes move on their own accord. When my thoughts are not moving or moving too slowly, I simply borrow from the archives. This means that my words come from something previously thought about and stored. I just pull from the archives and run the script.

Sometimes I wonder if this is simply a form of echolalia.

When I am a little bit dysregulated I am able to pull from the archives and run the scripts, speaking aloud their words pretty fluidly. I doubt most people realize the thoughts are not original, but instead historical. As I become more dysregulated I have a higher probability of pulling something from the archives that isn’t a particularly good match for the current conversation.

I also have an increasingly narrow swatch of the archives available to see and pull from. The best match from the limited swatch is at best not relevant and at worst downright offensive to those around me. It is one reason why I work hard at staying regulated – I want the lowest probability of unintentionally offending friends and co-workers in my day-to-day life.

more intense the emotion, the more patterned the movement of colors and pictures become. Emotions that arise from interactions with others can get really big really fast. The colors and movement patterns of the emotions are infused with snapshots of the current situation. As the pattern of color movement happens, portions of the snapshot are stretched and highlighted. When the emotions are positive, the stretching and highlighting of the snapshots are generally either amusing or very beautiful. When the emotions are negative, it makes the snapshots look similar to horror movie scenes with grotesque exaggerations.

The visual emotion scenario my brain creates runs in a predictable sequence over and over, each time through with an increasing vividness. Thus, a good and positive sequence can become quite nice and very relaxing and generate soft feelings towards others that are in the pictures, while a difficult or negative sequence becomes more and more horrifying as the loop cycles over and over. This is how I experience emotions.

The Patterns of Thoughts and Emotions Besides my thoughts and emotions being comprised of colors and pictures and their sounds and movements, they also occur in the context of unlimited patterns and combinations of patterns. I do not have control of the patterns any more than I have control of the colors, pictures, sounds or movement. Or

Emotions My emotions are also in colors and pictures, sometimes with sound and always with a high degree of movement. The

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The Autistic Sensory System, continued from page 33 erhaps it would be more accurate to say I am unaware of any p control. I am always hopeful that one day I will be able to exert control over some of this internal thinking and feeling process as I imagine that would make for an easier time interfacing with people around me.

The patterns are important, because whether in thought or in emotion, that is where I can impact a change. When I have a friend who will listen to my thoughts or is willing to hear the same patterned emotional story, after several times through I can latch onto something – usually a snippet of color or movement that comes with their words – that becomes helpful in breaking up the pattern and heading towards a new or different pattern. Practically, this means I am able to shift an emotion or incorporate new words or ideas into my thinking.

Most of my friends are not able to hang in there beyond the second or third pattern repeat. If it is a thought pattern I am attempting to repeat, they stop me and tell me I have already told them my views. Sometimes I am perceived as stubborn and controlling because I am saying the same thing over again without incorporating their ideas. This makes them feel like I am talking at them rather than with them about the topic at hand.

As soon as I recognize this I stop, but typically the damage has already been done in terms of how people view me. When I am in the midst of an emotion pattern, I repeat the visual loop I am seeing over and over. My friends report they feel they are not helpful as I am just repeating myself and not taking their words into consideration. They tell me they feel they are wasting their time because I am not listening. Typically, they walk away in frustration.

The Resolution of Difficult Thought and Emotion Patterns Most friends are not able to be helpful to me in interrupting my negative thought or emotion patterns only because they do not see that sticking with me while I replay the pattern might be helpful. Most friends seem to need to be able to make a positive impact the first time through. Really good friends allow a second or third round of my repeating pattern, but then do not see any benefit in continuing on in a cycle they seem unable to be helpful in altering.

If I have more energy, I can read a book or engage in creating a work of art. This allows for the same result of something in the pattern of the reading or the act of creating to hook into the thought or emotion pattern to affect a positive change.

The interesting thing about this is that generally, I become cognitively aware before my thought or emotion pattern changes. For example, if I misunderstood something with a friend that produced a negative emotion pattern and then discuss it with my friend, I will cognitively understand my friend’s perspective before I am able to interrupt the emotion pattern.

Practically, this means that even though I understand my friend’s words and the words do inform me that the pattern I have running is now faulty, my neurology will cause me to continue to repeat the pattern and to experience the negative upsetting emotions until some movement pattern outside me can interrupt and change that internal pattern.

My friends sometimes interpret this as me not being able to take their perspective. I know it looks like I am stubbornly hanging onto my false take on the situation even though my friend has told me their take on it. It is exasperating for them. It is for me too.

Even though I understand their words and their perspective, the pattern of thought or emotion is still running. It is more dominant and powerful than I care for it to be and I am not able to will it away. Believe me, I’ve tried! Instead, I need to work with it by finding some other movement to hook into that will serve to interrupt and change the pattern to match my newer cognitive understanding.

Here is a poem from my childhood that illustrates using a movement pattern in nature to be able to think about my thoughts from the day. When the pattern of nature’s movement was over, so was my ability to continue thinking.

At the time I wrote this poem I did not have the words to explain it further than the words of the poem. Today I do. That is progress – slow – 60 plus years in the making, but progress in understanding my own autistic neurology!

Because people are generally not very helpful to me in changing the patterns of negative thoughts or emotions, I have other ways that are helpful. All of the helpful things for me involve some sort of movement outside of me that has either nature sound or no sound attached to it. When I put myself in these contexts, I allow the thought or emotion pattern to run repeatedly until some element of movement outside that pattern presents itself in a way that my neurology can latch onto. Once this happens, the thought or emotion pattern can start to change. Sometimes this can happen in a few hours, but most of the time it takes several days. It is hard work. There are a few thought and emotion patterns that I have been trying to interrupt and change for years.

If I do not have lots of energy, I find it helpful to be outdoors.

Sometimes going for a walk, other times just sitting outdoors in solitude watching the patterns of nature is helpful. Eventually, something in nature’s pattern will hook into the thought or emotion pattern and affect a positive change.

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Judy Endow, MSW, LCSW maintains a private practice in Madison, Wisconsin providing consultation for families, school districts, and other agencies. Besides having autism herself, she is the parent of three grown sons, one of whom is on the autism spectrum. Her newest book, Autistically Thriving can be purchased at www.judyendow.com.

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The Autistic Sensory System, continued from page 34

Dog Walk Air Colors brown, soft, hush puppy skin folds swaying to and fro as short-legged clippety-clops echo off the sidewalk the pink-yellow air of a going down sun allow the girl and the dog forward walking room into the future by providing a reliable unchanging pattern of air color rhythm every night after day, every day after night predictably reliable over and over, again and again the girl lent the air colors a space inside her, adopting the yellow-pink air along with its early-time night of lavender-blue to herself then‌ tying the dog by his house, she went back inside her alien self to hide from a world she didn’t belong to and was not a part of but one from which she could see and borrow dog walk air colors to become for a moment something bigger than the alien girl that she was (Note: I no longer see myself as an alien who does not belong on this planet, but did back then.)

Selection adapted from Autistically Thriving: Reading Comprehension, Conversational Engagement, and Living a Self-Determined Life Based on Autistic Neurology (Endow, 2019)

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HEALTH + WELLNESS

Ask Spectrum Life Autism Resources for our Community

Each issue, Spectrum Life Editor and content curator, Karen Krejcha answers frequently asked questions about autism-related resources across the lifespan for our community.

Dear Spectrum Life: This COVID-19 pandemic has made healthcare appointments challenging for our family. I was recently not allowed to go into the doctor’s office for an appointment with my autistic adult son. He struggled. We both agreed he needs support advocating for his own needs. Do you have any resources that can help? - Katie in Portland

Produced in summer 2020, the toolkit is a collaboration between the Oregon Self-Advocacy Coalition, the Oregon Council on Developmental Disabilities, the Oregon Office on Disability and Health at OHSU, the University Center of Excellence in Developmental Disabilities, and other experts.

Although the kit was originally produced to serve people with disabilities in Oregon, the content is relevant to individuals and families regionally and nationwide.

Dear Katie, Thanks for asking! This is an important question. We have two robust locally developed resources that we recommend you visit: 1) “Taking Charge of My Health Care Toolkit” bit.ly/takechargehealth This toolkit is designed to provide self-advocates, including people with intellectual and developmental disabilities, with the learning knowledge, skills, and tools to best advocate for their health and health care. The toolkit can also be utilized by direct service professionals and family members who want to learn the information and support self-advocates in their learning.

Advocating for one’s health and health care is a necessary skill to ensure access to quality care and one’s ability to make informed decisions about what happens to their body. The toolkit’s nine modules provide comprehensive information for people interested in advocating for their health care, exploring new topics, learning new skills, building confidence, and IN getting a better understanding of their rights and THIS SECTION responsibilities.

The toolkit was designed with an interactive style. To accommodate various learning styles, the materials are provided in a variety of formats, including videos, written materials, and PowerPoint presentations.

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2) “AASPIRE Healthcare Toolkit” - www.autismandhealth.org The AASPIRE Healthcare Toolkit was created as part of an ongoing research project by the Academic Autistic Spectrum Partnership in Research and Education (AASPIRE) to help improve healthcare access and quality for autistic adults.

Resources on the autismandhealth.org website include information and worksheets for adults on the autism spectrum, supporters, and healthcare providers. The focus is Continued on next page

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Ask Spectrum Life, continued from page 36 on primary healthcare or healthcare with a regular doctor.

The main page is broken down into two sections.

Patients and Supporters: • Make a Personalized Accommodations Report for your healthcare provider.

• Healthcare • Staying Healthy • Your Rights in Healthcare • Autism Information • Medical Information • Checklists and Worksheets Healthcare Providers: • Autism Information, Diagnosis, and Referrals • Caring for Patients on the Autism Spectrum • Legal and Ethical Considerations • Associated Conditions • Resources and Links Healthcare providers are encouraged to share their Autism Healthcare Accommodations Tool and other checklists and worksheets with their autistic patients.

Best wishes for a healthy year ahead!

Artwork by Dave Born

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HEALTH + WELLNESS

Adapting to the New Normal at Specialty Athletic Training

By Ryan Lockard, CSCS*D, CSPS*D population that is already susceptible to obesity, anxiety, and depression. We pivoted to offering online virtual training sessions. We had to “adapt or die.”

We have had the ability to train in this capacity for several years, however, clients loved the in-person connection and socialization aspect that came from our traditional services.

However, they also had to adapt to the new way of living as state-ordered shutdown restrictions were placed on what services were considered essential.

Virtual became the new norm for EVERYTHING but our clients still craved the interactions with their peers and trainers that they had become accustomed to at our facilities.

With their longing for some type of normalcy and routine, along with our ability to pivot our business, we started offering our services virtually to all of our 100+ clients.

Normal. What is normal? Whatever your definition of normal may be, your “normal” daily life shifted completely back in March 2020 when COVID-19 began to make its presence felt in our country. The fitness industry took a huge blow, as did many other industries when the shelter-in-place orders took effect. My business was no different, yet we will be a stronger business and able to serve more individuals because of how society has shifted during the pandemic.

As the virus began spreading rapidly on the east coast, I took notice of how businesses were being affected; in particular, small fitness studios. I also began paying attention to how the same businesses were affected in foreign countries, and the future was appearing to be very grim for Specialty Athletic Training and other fitness companies. I was reminded of a quote from “Moneyball,” one of my favorite movies. “Adapt or die.”

In the movie “Moneyball,” Brad Pitt plays Billy Beane who was the General Manager for the Oakland Athletics during the late ’90s and early 2000s. The Athletics did not have the budget to sign the talent required to compete for the pennant, at least not in the traditional sense. Beane had to think outside of the box and adapt if he wanted the organization to thrive. This required going against the traditional ways of baseball operations and adapting to the situation.

Location used to be a barrier to accessing our services, but with our new ability to train virtually, it no longer is. We are now set up to train anyone, ANYWHERE. We have gained several clients outside of our traditional service areas and will continue to offer virtual services in the post-COVID future.

As Oregon attempted to return to the old normal and eased restrictions, it provided a way for us to adapt once again.

With the aid of my Portland facility manager, Brad Carter, we converted my garage into a weight room and immediately began offering in-person services to local clients that were going stir crazy and craving some personal connection.

These circumstances have forced us as trainers to find new ways of communication, be creative with exercise selection, and forced us to do more with less; overall making us better trainers and developing skills that will carry over to the post-COVID era.

We had the option to “adapt or die.” We chose to adapt and look forward to continuing adapting in order to break down barriers to fitness for the community that we serve.

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Photo courtesy of Lavinia Nitu - Ma.Ni. Photo Studio

Ryan Lockard is the Founder and CEO of Specialty Athletic Training, a personal training company located in the Portland Metro area and Central Oregon, Over the past eight years, I have taken pride in partnering that specializes in fitness programs for with facilities and creating an inclusive community to provide children and adults with special needs. He access to fitness for our clients. This community has allowed is a Certified Strength and Conditioning our clients to thrive in a supportive environment and has Specialist (NCSA), Certified Special helped break down common misconceptions and stereotypes Populations Specialist (NSCA), and that society often associates with their diagnoses. In-person currently serves on the board of directors training was our traditional way of providing services to our for the Autism Society of America and clients, but that quickly became no longer an option. the Central Oregon Disability Support Network. He can be reached The shelter-in-place order came quickly and swiftly shifted at Ryan@SpecialtyAthleticTraining.com the way that we had to provide services to our clients, a or www.SpecialtyAthleticTraining.com.

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therapy

IN THIS SECTION Sensory KIDS (and Adults too)........................................................................41 Spectrum Life Resource Directory............................................................46 Upcoming Autism Empowerment Events.............................................47

Photo courtesy of Sensory KIDS

THERAPEUTIC OPTIONS AND RESOURCES

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THERAPY

Sensory KIDS (and Adults too) Family-Centered, Kid-Driven, Therapist-Led

All photos courtesy of Sensory KIDS

By John Krejcha

Serving the Portland metro area for the past 11 years, Sensory KIDS LLC is an occupational therapy clinic specializing in sensory processing and regulatory disorders. They focus on personal strengths, setting meaningful goals, and exploring how to support individual differences.

Spectrum Life Magazine recently connected with founder Lisa Porter to learn about their pediatric practice and their Sensory Connections program for adolescents and adults.

Tell us about Sensory KIDS and how it all started.

I started my practice in 2009 when I joined a colleague in her small speech therapy clinic. A few months later, I took part in Dr. Lucy Jane Miller’s intensive mentorship program at the STAR Institute for Sensory Processing Disorder in Colorado and discovered a whole new approach to therapy.

I fell in love with my career at that point. Kids loved coming to therapy, families felt very supported, and I just wanted to learn more! Dr. Miller invited me to spend the summer doing a fellowship with her at the STAR Institute, and I jumped at the chance. In fact, I spent two summers at STAR and learned so much there! That’s when the small practice actually became

Sensory KIDS and started to grow to the point that I wasn’t able to spend the summers away. I started teaching at STAR and am still very much a part of the team there, and all of our therapists take part in the STAR mentorship program.

One of the things I love about the STAR approach is the focus on mentoring and learning; it’s not just for new therapists. We make learning a regular part of our culture at Sensory KIDS. Every week I have one-on-one supervision sessions with each of the Occupational Therapists (OTs). We talk about cases, review videos, and brainstorm about treatment plans and home programs. We also have weekly team meetings where we review the latest research, talk about new treatment ideas, or collaborate on projects. I still learn so much from these meetings, and the therapists get to have ongoing support and learning opportunities.

What is the story behind the Sensory KIDS name?

Our name, Sensory KIDS, was based on the book Sensational Kids, written by my mentor and friend, Dr. Lucy Jane Miller.

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Sensory Kids (and Adults too), continued from page 41 Most people don’t know that KIDS is actually an acronym. It stands for Kids with Individual Differences & Sensory needs.

The acronym is a little bit of a stretch, but it brings in the two main focuses of our approach – Sensory Integration Therapy and Developmental Individual-difference Relationship-based therapy (DIR/Floortime).

Do you or any of your staff have a personal connection to someone on the autism spectrum or with sensory processing differences?

Well, we are so deeply embedded in the sensory world that we all recognize our own sensory differences! That doesn’t mean any of us have Sensory Processing Disorder (SPD), but we do bring our own differences into our work with children and adults.

What inspired you to create a program that serves the autism and disabilities communities?

My love for sensory integration and processing goes back a long way. In my first job as a preschool teacher, I had a number of children with autism and other developmental and behavioral challenges. It was the school OT who taught me to recognize how sensory processing challenges impacted children’s abilities to regulate their behavior and participate in social and play interactions. Sensory processing differences are almost always a part of autism, and we want to support autistic individuals (kids and adults) to understand the physiology behind some of the behaviors and characteristics that make them unique. And of course, we want to help them recognize how they can use their sensory strengths to support their areas of challenge.

What are some of your approaches when working with an autistic client?

Our approach is very play-based. Our sessions are generally unstructured, and this is by design. Our therapists follow a child’s lead and then subtly structure the child’s preferred play to meet clinical goals. While it looks like it is just play, there is a significant amount of clinical reasoning and research behind this approach. The key is to keep kids regulated and engaged during sessions so we can strengthen autonomic nervous system functioning – which is what gives us the ability to calm down or regulate our responses to sensory input. This focus on physiological regulation and engagement in the process helps support the development of sensory processing abilities, emotion-regulation, and body awareness.

Whether we’re working with children or adults, our therapy is always very movement-centered and body-based. That’s because our ability to regulate our nervous systems is intricately tied to our vestibular (movement and balance) and proprioceptive (muscle and joint) systems. It’s one thing to learn self-regulation strategies, but it’s so much more effective to feel it in your body and truly develop self-regulation capacities.

I think the best part of the STAR approach is the focus on fun and play! Well, that and the fact that the play is backed up by research, neuroscience, and clinical expertise. It’s supposed to look like we’re just playing, but we’re always busy working to follow a child’s lead, support them to be successful, and most importantly, help them develop the foundations for building self-regulation.

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What type of therapy approaches and services do you offer?

Our approach is really a combination of Sensory Integration Therapy and DIR/Floortime (the relationship-based therapy that I mentioned earlier), but we also use a lot of what we call “topdown” methods. That means using a more cognitive approach to teach kids about their bodies and their individual sensory differences. We only use the top-down approaches when kids are developmentally ready to engage in that kind of reflection.

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Sensory Kids (and Adults too), continued from page 42 When they’re ready, we like to teach kids to recognize their sensory strengths! What tools do they have to support themselves and their nervous systems? We will actually talk to kids about their brains, usually referring to the “big brain”

Where are you located?

We are located at 1425 N. Killingsworth Street in North Portland, just off of I-5. We have an amazing gym and lots of space for our movement and body-based therapy.

What have been some of the challenges and successes during the COVID-19 pandemic? What kind of appointments do you offer?

We are currently offering both in-person and telehealth sessions, but of course, we are closely following Centers for Disease Control and Prevention (CDC) and Oregon Health Authority (OHA) guidelines. We’ve been making regular changes to our guidelines since March 2020.

Our silver lining has been our telehealth sessions. Since our approach differs from more traditional activity-based OT, we had to think outside of the box when it came time to go online! How do you translate sensory and play-based therapy to the computer?!

As it turns out, we’ve had a lot of success, and of course a lot of fun! We always provide recommendations for home, but it’s so much easier to do when we’re actually providing therapy “in your home”! Our therapists are able to see what you have readily available and adapt the therapeutic play, or other strategies, so it works for you and your family.

Since starting telehealth, we’ve worked with flying squirrels, dinosaurs, Alaskan salmon, and ferrets! It’s been a lot of fun.

We’re also really excited about the fact that we’re ready to bring our services to people in rural areas who don’t have access to OT clinics.

Would you share a story about a child on the autism spectrum you have helped and the growth you’ve seen?

We have so many stories of success to share; it’s hard to think of just one. But I always think about a family I’ve worked with for years. When we started working together, Sam was just 5 years old. He and his parents would play and connect during sessions, always with a focus on keeping Sam regulated and making him feel successful.

and the “little brain.” We help them recognize that they can use their “big brains” or “thinking brains” (cerebral cortex) to learn how to stop their little brains (amygdala or limbic system) from taking over when they’re angry or scared. But we also help them understand WHY their little brains might be taking over when their sensory systems are bombarded. We try to come from a strengths-based lens, avoiding judgement, and not focusing on deficits.

What age range of clients do you work with?

We work with all ages! I’ve worked with infants as young as 7 weeks, and we frequently work with adults and adolescents.

In fact, we created a second name, Sensory Connections, to convey that we don’t just work with kids. This work is so important for adults, many of whom are just recognizing sensory differences that have been a challenge for years.

It didn’t take long before I could talk to Sam about changes in his body during play (moving from feeling slow to fun-fast, and even sometimes too-fast). As he became more aware of his body, we actually started referring to his amygdala and cerebral cortex! At that young age Sam wasn’t close to being able to self-regulate, but he was learning and growing with help from his parents through co-regulation.

Years later, I still work with Sam and his family. For a long time now, Sam has been able to work with me and his mom to problem-solve and create strategies and plans for staying regulated and being successful in new or stressful situations.

Sam’s self-confidence has really grown since he learned he has some control of his body and his responses to challenging sensory input.

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Sensory Kids (and Adults too), continued from page 43 Please tell us about your past speaking engagements and what you have planned for the future.

One of the things I’m most proud of is the Sensory Seminar series (now called Sensory PDX) that I started in 2011 with Sharron Donnelly and Lynette Burke (from Advanced Pediatrics), Joanne Bloom, Teresa Denney, and Debra Jablonski.

Sharron and I continue to work with the Swindells Resource Center at Providence to bring speakers to talk about different supports for children and families with sensory challenges. We start this series every fall, with presentations every month or two through the school year. It’s a little bit different this year, but Sharron and I both presented online in the fall, and hope to have one or two other presentations this season.

At Sensory KIDS, we started an online parent-training program in early 2020. This program was designed after my dissertation research, which was based on a three-part series.

Each session included short lectures, strategies to practice at home, and then time to reflect with other parents. We designed the online program to bring in some of those same elements, especially the time to connect with other parents.

We hope to have this series running again in early 2021.

How would somebody get started to determine what would be best for them?

Our clinic manager, Megan Klein, has streamlined our inquiry process so it is very easy to follow on our website at www.sensorykidsot.com.

For people who are unsure whether or not they (or their child) have disordered sensory processing, or would benefit from therapy, we have a quick screening tool we can share. We are also happy to schedule a brief call to discuss concerns and questions.

increasing community awareness of sensory strengths and differences through education encouraging curiosity increasing awareness of the magic and science of play and relationships building authentic connections through support and training groups reaching rural communities through distance training and intervention taking part in research to continually improve our practice, and understanding of sensory processing That’s awesome! What are your goals for the future for Sensory KIDS? We are all very excited about Sensory Connections, our adult program, and we have plans to continue to grow. We look at Sensory Connections as an opportunity to create a community of sensory health and wellness, not just intervention for sensory disorders. We all have sensory differences, both strengths and challenges, and we believe that increasing awareness of individual sensory differences is essential for building resilience and supporting overall well-being.

You can connect with us at (503) 575-9402 or email us at info@sensorykidsot.com.

We’re also on Facebook: www.facebook.com/sensorykidspdx What else is important for Spectrum Life Magazine readers to know?

Last year the Sensory KIDS team collaborated on our shared values, and created a new vision and mission statement: Vision: A community of support for individuals and families with sensory and regulatory differences, where resilience and authentic connections are fostered.

Mission: Providing support to individuals and families with sensory processing and regulatory differences to create resilient, meaningful, and connected lives.

Jolly John Krejcha is co-founder of Autism Empowerment and serves as Programs Director. He serves on the Editorial Advisory Board of Spectrum Life Magazine and is a guest host for the Autism Empowerment podcast. John is married to co-founder Karen Krejcha and is the father of two amazing children and their feisty cat, Zula. While John is the only one in the family who is not on the autism spectrum, he identifies as a neurodiverse and loving ally.

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Welcome to Spectrum Life Magazine’s Winter 2020-21 Reader Survey and Contest We value your time and feedback. Your answers help us learn more about you and how we can better serve you, your family (when applicable) and the autism community at large.

Answer our survey by March 1st, 2021 and you will be entered to win a surprise package worth over $100.00.

If you win, we will contact you via email and mail your prize package to you.

https://www.surveymonkey.com /r/SLMWinter2021 On behalf of Autism Empowerment and Spectrum Life Magazine, thank you again for your support!

sensorykidsot.com • 503-575-9402 www.spectrumlife.org

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SPECTRUM LIFE

resource directory

www.spectrumlife.org

Spectrum Life Magazine serves youth, adults, and families in the autism community. We seek to partner with nonprofit organizations, businesses, support groups, educators and professionals from a variety of fields who desire to support our community in a meaningful way.

If you are an autism-friendly provider who desires to connect with new clients, we can help you make those connections through online directory listings. We also offer advertising and sponsorship opportunities for Spectrum Life Magazine and the Autism Empowerment Podcast. Please contact John Krejcha 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.

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Upcoming Events • www.AutismEmpowerment.org Due to the pandemic, in-person support, social and service groups are not meeting in the first quarter of 2021. Please visit our website for updated information.

PODCAST PROGRAMMING

Autism Empowerment and Spectrum Life Magazine appreciate your support: www.AutismEmpowerment.org/donate

MONTHLY Autism Empowerment offers ongoing Enrichment, Support Groups, Social Clubs and Volunteer Service opportunities. Please see our website for dates, times and Facebook group links.

Ongoing Enrichment: • Autism Empowerment Podcast • SpectrumLife.org website • AutismEmpowerment.org website Autism Empowerment launched our new podcast in December 2020.

Read our interview with Karen and John Krejcha on page 13 for more details.

Episodes, Trailer, Show Notes, and Transcripts at: www.AutismEmpowermentPodcast.org

Ongoing Service & Volunteerism: • Autism Serves Kids Care Club • Autism Serves - Volunteerism for all ages Online Support Groups: • Adults on the Autism Spectrum (peer-led) • AWEtism We Embrace (Adults, Parents, Allies) • Parents of Tweens, Teens & Young Adults

Connect with us online!

linktr.ee/autismempowerment

/SpectrumLifeMagazine /AutismEmpowerment @SpectrumLifeMag @AutismEmpowermt New episodes on Mondays and Thursdays with special series to be added.

Subscribe on Apple Podcasts, Spotify, Google Podcasts or wherever you listen to your favorite shows.

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