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PLUS: UNITED STATES MILITARY SECTION EP’S ANNUAL EDUCATION ISSUE:

COLLEGE IN THE MIDST of COVID-19 AND • AADMD: EXCEPTIONAL PARENT MAGAZINE SEPTEMBER 2020 $7.95

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ACCESSIBLE LANGUAGE LEARNING

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89% are satisfied with their social lives 64% spend time with friends at least once per week

CONTENTS

SEPTEMBER 2020 VOLUME 50 ISSUE 9

EP’s ANNUAL EDUCATION ISSUE

22 EDUCATION ISSUE 22 THEY CALL IT “HIGHER” EDUCATION By Michael John Carley

28 REDEFINING CATASTROPHE LESSONS FROM THE ‘NEW NORMAL’ By Jennifer Bogin, MSed, BCBA, LBA

34 HOW A MULTI-TIER SYSTEM OF SUPPORTS CAN HELP FACILITATE STUDENT RECOVERY AFTER COVID-19 By Debbie Esposito and Lauren Agoratus, M.A.

38 ACCESSIBLE LANGUAGE LEARNING By Jem Mabalot

42 ONE WAY SCHOOLS ARE BECOMING MORE INCLUSIVE By Renee Dease

44 IN THE CONFUSION OVER REOPENING SCHOOLS, WHERE DO OUR KIDS WITH SPECIAL NEEDS END UP?

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By Laura Whitaker

36 COLLEGE IN THE MIDST OF COVID-19 By Kara Jolliff Gould, Ph.D.

FEATURES 48 EMBRACING ALL AUTISMS By Kimberlee Rutan McCafferty

56 A DOLL LIKE ME By Amy Jandrisevits

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51 VISION LOSS IN CHILDREN WHOSE EYESIGHT MAY BE 20/20 REQUIRES NEW DIAGNOSTIC AND TEACHING STRATEGIES By Kathryn DeMott

ON OUR COVER EP’s Annual Education Issue approaches the back-to-school season with a variety of expert advice, personal experiences and practical tips. From early childhood education to college students, parents will find reliable resources to help with the difficult transition back to the real - or remote classroom. Coverage begins on page 22.

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ep-magazine.com | EP Magazine • September 2020 1

CONTENTS

SEPTEMBER 2020 VOLUME 50 ISSUE 9

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DEPARTMENTS ANCORO IMPARO

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4 QUASIMODO SYNDROME By Rick Rader, MD

7 WHAT’S HAPPENING AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE & DENTISTRY

10 “TEACHERS WITH DISABILITIES ARE NOT A HANDICAP” By H. Barry Waldman, DDS, MPH, PhD, Lauren M. Koenig, and Steven P. Perlman, DDS, MScD, DHL (Hon) HEARTSIGHT

14 COULD THE FUTURE PROVIDE EDUCATION FOR LEARNERS WITH SPECIAL NEEDS? By Christina Llanes Mabalot

F R O M O U R FA M I L I E S … T O Y O U R FA M I L I E S

MILITARY SECTION

68 PRODUCTS & SERVICES

MILITARY SECTION 60 PLANNING FOR SERVICE MEMBERS MILITARY LIFE

62 THE MILITARY AND FAMILY LIFE COUNSELING PROGRAM THRIVE HELPS MILITARY PARENTS AND CHILDREN MARRIAGE ENRICHMENT PROGRAMS PUZZLES & CAMO

66 NO PANTS, NO PROBLEM By Shelly Huhtanen

60 PLANNING FOR SERVICE MEMBERS By Rob Wrubel, CFP® MILITARY LIFE

62 THE MILITARY AND FAMILY LIFE COUNSELING PROGRAM THRIVE HELPS MILITARY PARENTS AND CHILDREN MARRIAGE ENRICHMENT PROGRAMS PUZZLES & CAMO

EP FOR FREE! GATHERING AND SHARING INFORMATION AS TOOLS FOR POSITIVE CHANGE FOR THE SPECIAL NEEDS COMMUNITY. To subscribe to the free eMagazine or for the print magazine ($95 per year) go to: www.ep-magazine.com

2 September 2020 • EP Magazine | ep-magazine.com

66 NO PANTS, NO PROBLEM By Shelly Huhtanen

The contents of EP magazine’s Military Section are not necessarily the official views of, or endorsed by, the United States Government, the Department of Defense, or the Department of the Army. The appearance of advertising adjacent to the Military Section does not constitute endorsement by the United States Government, the Department of Defense, or the Department of the Army of the products or services advertised.

Information and Support for the Special Needs Community

VOLUME 50 ISSUE 9



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Editor-In-Chief • Rick Rader, MD • [email protected] Managing Editor • Vanessa B. Ira • [email protected] Publisher • Vice President of Business Development & Sales Accounting Art Direction & Design Information Technology Expert

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Exceptional Parent (ISSN 0046-9157) is published monthly 11 times per year plus the special January Annual Resource Guide by TCA EP World, LLC, dba Exceptional Parent Magazine, 1360 Clifton Avenue, Ste. 327, Clifton, NJ 07012 Internet address: www.ep-magazine.com. All rights reserved. Copyright ©2020 by TCA EP World, LLC. Exceptional Parent™ is a registered trademark of TCA EP World, LLC Postmaster: Please send address changes to: Exceptional Parent,1360 Clifton Avenue, Ste. 327, Clifton, NJ 07012. Any applicable periodical postage paid at Johnstown, PA and additional mailing offices (USPS 557-810). Basic annual subscription for EP Digital is free. Limited edition print subscription $95.00. Subscriber Service: Direct all inquiries & address changes to: Exceptional Parent, 1360 Clifton Avenue, Ste. 327, Clifton, NJ 07012 08758. Customer Service/New Orders: E-mail: [email protected] or call toll free: (800) 372-7368 extension 119. Back issues incur a charge of $10.00 each and depend upon availability, call (800) 372-7368. Agreement #1420542

EP EDITORIAL ADVISORY BOARD

Henry G. Chambers, MD Director, Southern California Cerebral Palsy Center at Rady Children's Hospital-San Diego, Co-director 360 Sports Medicine Program David Fray, DDS, MBA Associate Professor, Department of General Practice and Dental Public Health, University of Texas School of Dentistry, Houston, TX

Matthew Holder, MD CEO, Lee Specialty Clinic, Louisville, KY Global Medical Advisor for Special Olympics International Gary Liguori, Ph.D Fellow of the American College of Sports Medicine (ACSM), Dean, College of Health Sciences, University of Rhode Island Patricia E. McGoldrick, CPNP Pediatric Neurology & Epilepsy, Associate Director, Developmental Disability Center, Roosevelt Hospital, NY Steven P. Perlman, DDS, MScD, DHL (Hon) Clinical Professor, Boston University, School of Dentistry, Boston, MA

Amged M. Soliman, Esq. Attorney, US Federal Government Stephen B. Sulkes, MD Pediatrician, University of Rochester Medical Center, Rochester, NY Steven M. Wolf, MD Associate Professor of Neurology and Director of Pediatric Epilepsy, affiliated with Mount Sinai Beth Israel, Mount Sinai St. Luke’s, Mount Sinai West, New York, NY Allen Wong, DDS, EdD, DABSCD Professor and Director AEGD Program/Hospital Dentistry, University of the Pacific, Dugoni School of Dentistry, AADMD President

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EP magazine neither endorses nor guarantees any of the products or services advertised in the magazine. We strongly recommend that readers thoroughly investigate the companies and products being considered for purchase, and, where appropriate, we encourage them to consult a physician or other credentialed health professional before use and purchase.

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Note from the Editor-in-chief: EP World, Inc. advocates for the dignity of all citizens with disabilities including the use of “people first language” where possible. We do not normally edit articles and submissions that do not reflect this language, therefore, at times, readers might see alternative nomenclature. – Rick Rader, MD

Robert K. Ross Ed.D., BCBA-D, LBA President of the Autism Special Interest Group, Association for Behavior Analysis International, Senior VP at Beacon ABA Services of MA & CT

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Jean F. Campbell Principal, JF Campbell Consultants; Founding Board Member, Professional Patient Advocates in Life Sciences (PPALS)

Saadi Ghatan, MD Site Chair, Neurosurgery, Mount Sinai West, Mount Sinai St. Luke’s,New York, NY

Tera Roberts Executive Director, Orange Grove Center, Chattanooga, TN

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Mark L. Batshaw, MD Prof. and Chairman, Dept. of Pediatrics, The George Washington University Medical Center, Washington, DC

Allen Friedland, MD Pediatrician and Internist Pediatric to Adult care Advisor, Wilmington, DE

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Lauren Agoratus Parent, NJ state and MCH Region II (NJ, NY, PR, VI) Coordinator for Family Voices, NJ CCAN (Caregiver Community Action Network), National Family Caregivers Association, Mercerville, NJ

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ANCORA IMPARO

RICK RADER, MD



EDITOR-IN-CHIEF

Quasimodo Syndrome There is no such thing as Quasimodo syndrome; I made it up. I use it because I am guaranteed that none of my students (medical students, interns, residents, fellows and attendings) have ever heard of it and thus I get their attention – sometimes for as long as 10 minutes.

If you’re in the field of developmental medicine (providing healthcare for individuals with intellectual and developmental disabilities), you spend considerable time navigating the minefields of diseases, disorders, disabilities, impairments, illnesses and syndromes. While the terms are often used interchangeably, they are in fact not the same. The terms mean different things and those differences often impact on eligibility for services, treatment, reporting, diagnostics, research, inclusion in clinical trials and funding. Over the years I have included explaining the distinctions in my training. It’s important for clinicians, educators, researchers, funders, families and patients to appreciate the difference between a specific disease and a syndrome. While there are approximately 30,000 known human diseases, not all of them are syndromic. Most of the readers of EP are familiar with (or at least heard the names) Down syndrome, Prader-Willi syndrome, Williams syndrome and Fragile X syndrome. I emphasize the importance of learning about syndromes since they can provide a GPS to better understand, anticipate, and respond to the variety of moving parts found in most syndromes. I use Quasimodo syndrome as an example of how we need to approach and cogitate about syndromes that we never heard about, read about or thought about. For full

SANCTUARY: Charles Laughton portrayed Quasimodo in the 1939 version of The Hunchback of Notre Dame. Feared by the townspeople as a sort of monster, Quasimodo finds sanctuary in an unlikely love that is fulfilled only in death. 4 September 2020 • EP Magazine | ep-magazine.com

disclosure, there is no such thing as Quasimodo syndrome; I made it up. I use it because I am guaranteed that none of my students (medical students, interns, residents, fellows and attendings) have ever heard of it and thus I get their attention –

sometimes for as long as 10 minutes. I had to resort to using Quasimodo syndrome since I had to stop using Walking Corpse Syndrome (also known as Cotard’s syndrome) which I thought was rare enough that no one would be familiar with. That

worked for 11 years until an intern nodded when I mentioned it and shared that his older brother had it. It was then and there that I decided that I would outsmart this new crop of millennials.

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uasimodo was the fictional character and the main protagonist of the novel The Hunchback of Notre Dame by Victor Hugo. Douglas Harper shares that “Quasimodo was born with a hunchback and feared by the townspeople as a sort of monster, but he finds sanctuary in an unlikely love that is fulfilled only in death.” I can remember seeing several movie adaptations of the story starring Lon Chaney (1923), Charles Laughton (1939) and Anthony Quinn (1956). I believe it was among my earliest introductions to human variation, intolerance and the cruelty experienced by these unfortunate individuals. I was delighted in being the creator of Quasimodo syndrome and wondered about other “made up” diseases. Real diseases have long been part of the storyline in fiction. Boccaccio (circa 1353), in his book The Decameron, tells the story of 10 people of Florence who escape from the Black Death. Tuberculosis was a common disease in the 19th century, and was a major player in Russian literature, including Dostoevsky’s Crime and Punishment and Kirilov’s The Possessed. The Brits saw the significance of TB in the works of Charles Dickens (Dombey and Son), Gaskell’s North and South, and Ward’s Eleanor. John Dugdale in his book Plague Fiction, suggests that “Albert Camus (The Plague) was based on cholera in 19th century France. It was seen as a fable about the need for people to help

each other in the meaningless world seen by existentialism, and as alluding to the German invasion of France, fresh in Camus’s mind.” Nancy Wexler, writing in the British medical journal The Lancet offers, “Huntington’s disease appears in many novels, such as Ian McEwan’s 2005 Saturday. It was criticized for its negative portrayal of the protagonist with the disease. Netflix and other movie channels feature an abundance of movies featuring Zombie apocalypses, fast spreading viral invasions (perhaps too close to home), roaming rabid animals spreading instant death, unstoppable super bugs and alien’s proclivity to shrink humans simply by commanding it. Thanks to Hans Qu for sharing some fictional diseases that we should be glad we don’t have to suffer from nightly White House briefings on how to prevent their spread. Carnosaur Virus: This airborne pathogen infects and impregnates women with dinosaur embryos, which Alien their way out of the unwilling mothers’ wombs. Ostensibly the goal of this genetically-engineered virus is to wipe out humans and allow dinosaurs to rule the world once more. MM88 Virus: A super virus that amplifies the negative effects of other viruses and bacterium, making it extremely deadly. The epidemic kills off the entire world population except for 855 people stationed on an Antarctic base. Eventually, everyone dies in a nuclear fire anyway, which is one way to eliminate the virus. Simian Flu (Planet of the Apes): ALZ-113 is interesting because it demonstrates radical-

“Perhaps the idea of fictional syndromes is not such a bad idea. Maybe there is something we could learn from this unexplored model. Perhaps it would not be based on how can we stop the spread of the syndrome but how can we accelerate its spread, achieve ‘herd acceptance’ and hope we never foster antibodies to fight it.”

ly different symptoms between apes and humans. While it enhances the intelligence of apes, allowing them to form a human-like civilization in less than a generation, it straight-up kills humans. The mutant strain later “devolves” humans, but the only demonstrable example of this is Nova, the little girl who is still capable of expressing emotion and empathy. Meanwhile, the more humanlike Caesar begins to show a more warlike and vengeful disposition by the end of the series, raising the interesting moral quandary: What really defines intelligence?

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erhaps the idea of fictional syndromes is not such a bad idea. Maybe there is something we could learn from this unexplored model. Perhaps it would not be based on how can we stop the spread of the syndrome but how can we accelerate its spread, achieve “herd acceptance” and hope we never foster antibodies to fight it. TIPS: Total Inclusion of People Syndrome – People who are exposed to this demonstrate an uncanny behavior to care for and about people who appear different from them. HELP Syndrome: Helping to Eliminate Learned Prejudice – People exposed to this become opposed to stigmatizing people, isolating them and disregarding them. LEARN Syndrome: Learning to Embrace, Accept and Respect Neuro-diversity – People exposed to this finally open up their hearts, minds and communities to people who think, behave, and express themselves differently. Of course, we would need a fictional organization to ensure that these syndromes do not exhibit a “flattening” of their spread or worse become eradicated. What about the CDC – Celebrate Diversity in the Community. But why fictional? • ANCORA IMPARO In his 87th year, the artist Michelangelo (1475 -1564) is believed to have said “Ancora imparo” (I am still learning). Hence, the name for my monthly observations and comments. – Rick Rader, MD, Editor-in-Chief, EP Magazine Director, Morton J. Kent Habilitation Center Orange Grove Center, Chattanooga, TN

ep-magazine.com | EP Magazine • September 2020 5

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WHAT’S HAPPENING MASK USE POSES CHALLENGES FOR CHILDREN AND ADULTS WHO STUTTER Solid face coverings can contribute to misunderstandings because they hide a person’s mouth. Many people who stutter experience blocks – which are long, silent pauses – in their speech.

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ften, the only cue to a listener is seeing the speaker’s facial area when they are in a block. Listeners may not realize that a person is experiencing a block if they are wearing a mask. As a result, they may talk over the person, move on, or misinterpret what they believe is a nonresponse as disrespectful or worse. This scenario can be especially problematic if someone who stutters is involved in an emergency scenario (e.g., medical crisis) where a miscommunication of this form can have serious consequences. Although it is important for everyone to be aware of this circumstance, it is especially so for teachers, medical staff, first responders, and law enforcement officers. For people who stutter, ASHA suggests the following tips to help reduce any miscommunication that could arise: • Let people know that you stutter (called self-disclosure). You may choose to state this verbally at the beginning of a conversation or carry this printed card from the Stuttering Foundation with you. This will let people know to give you extra time if you need it, and it can help remove some pressure if you are anticipating speech difficulties. • Wear a clear mask. By doing so, others will be able to see if you are experiencing a block. These masks are available at a variety of online retailers. • Practice at home. You can de-sensitize yourself to challenging scenarios by rehearsing conversations with loved ones in a comfortable setting before venturing out with a mask. • Consult your speech-language pathologist (SLP). If you’re working with an SLP, see what they suggest for modifying your speech therapy techniques.

• Turn to support networks. There are many online communities for people who stutter. Your peers may have suggestions or simply provide comfort. Everyone can help people who stutter by doing the following: • Be patient. Give the person a chance to speak. Don’t try to finish their thought or speak for them. • Be kind. These are extremely stressful times for everyone. You may be hurried while out in public, but try to remain understanding to those who require extra effort to speak. • Ask for clarification. If you don’t understand what a person is saying, let them know. Don’t guess or ignore their request. • Be flexible. Ask a person if they need more time to speak. Be open to other ways of communicating, such as reading a written message. Consider if policies need updating (e.g., in a medical setting, allowing an extra person to accompany a patient if they will need help communicating key information). For more information, visit www.asha.org/public ABOUT THE AMERICAN SPEECH-LANGUAGEHEARING ASSOCIATION (ASHA):

ASHA is the national professional, scientific, and credentialing association for 211,000 members and affiliates who are audiologists; speech-language pathologists; speech, language, and hearing scientists; audiology and speech-language pathology support personnel; and students. Audiologists specialize in preventing and assessing hearing and balance disorders as well as providing audiologic treatment, including hearing aids. Speech-language pathologists identify, assess, and treat speech and language problems, including swallowing disorders. www.asha.org

AADMD HONORS EP’s VANESSA IRA FOR DEDICATION TO THE DISABILTY COMMUNITY Vanessa B. Ira, longtime Managing Editor of Exceptional Parent Magazine, was recently honored for her “tireless contribution to education, advocacy and support to the disability community” by the American Academy of Developmental Medicine and Dentistry. In an announcement of the award, the AADMD’s Senior VP of Public Policy and Advocacy Dr. Rick Rader wrote: “On behalf of the members and the board of the AADMD it gives me great pleasure to present this award to Vanessa for her years of service and support of the American Academy of Developmental Medicine and Dentistry.”

The announcement continued: “The AADMD greatly appreciates Vanessa’s dedication and ongoing commitment to spreading knowledge regarding intellectual and developmental disabilities to families, clinicians, individuals with ID/DD and the community through the pages of Exceptional Parent Magazine. The AADMD recognizes Vanessa as one of the Heroes of our organization and wishes her many more years of vigorous advocacy.” The planned Annual Conference in Pittsburgh, PA., where this tribute would have been presented to Vanessa, was changed to a virtual conference due do the COVID-19 pandemic. ep-magazine.com | EP Magazine • September 2020 7

WHAT’S HAPPENING TURNING TRAGEDY INTO TRIUMPH: LIVING LIFE WITH NO BUCKET LIST On Ashley Bugge’s Instagram account, you’ll see a vibrant, free-spirited woman embarking on scuba diving adventures in one photo and, in the next, she’s strumming a ukulele while singing about living life on a merry-goround with her toddler yelling for her to stop.

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croll a little further and you’ll find an emotional black and white photo of Bugge in a hospital bed, kissing her newborn daughter on the head. At first glance, many women can relate to this life-changing moment post-birth, where their hearts burst with joy. But if you pause and look at this photo in detail, you’ll notice Bugge’s baby holding a funeral card in her hand—as close as she’ll get to wrapping her daddy around her fingers. Bugge’s husband Brian, a naval officer, tragically died during a recreational scuba diving accident near their home in Hawaii just two months prior. That Sunday morning, she was winning the mom-life, juggling and waddling out of the house with her pregnant belly, one-year-old and a three-year-old in tow before 9 a.m. to make a Target run, during which she planned to buy baby clothes. But one phone call turned her world upside down when she was told her husband was in an accident and a car was being sent to take her to the hospital. There, Bugge was told the devasting news. She planned to spend the day preparing for the family’s new arrival and suddenly found herself heartbroken, pregnant and alone with her kids on an island in the middle of the Pacific Ocean trying to comprehend the final departure of the love of her life. The man who told her every time he went on a new mission, “I’m always coming back home to you.” Dive further down Bugge’s Instagram page and you’ll see photos of her husband 8 September 2020 • EP Magazine | ep-magazine.com

HOME AWAY FROM HOME: Ashley Bugge with children Adeline (top), Isabel (lower left) and Hudson on a European trip.“ I created this family, I made this trip happen, and we’re all here right now because of Brian and I. I’m so proud and grateful for this moment in time.” as a doting dad, their text messages, and the last post she would ever make about “date night.” There’s one post (where Bugge shares a photo of a book about how to write your autobiography: “@diving_the_world bought this for me in 2013, saying I need to tell my story. This book has been traveled back and forth across the Pacific Ocean and today I pulled it out of a box in

the garage to use as inspiration in writing OUR story.” Always Coming Back Home: An Emotional Tale of Love, Adventure, Tragedy and Hope (Morgan James, September 15, 2020) is a love story that engages and entertains readers with raw, candid, and often amusing anecdotes that span years and continents. Holding nothing back, Bugge shares with readers her deepest

PHOTO COURTESY ASHLEY BUGGE/ASHLEYBUGGE.COM

WHAT’S HAPPENING emotions, and even publishes real letters and emails she exchanged with her husband during their time apart. Always Coming Back Home provides an inside look at the life of a military spouse, exploring all the fear, love, hope, and heartbreak. With her powerful stories and emotional vulnerability, Bugge tells an impactful, true story that can’t be put down. Preserving her husband’s legacy and accomplishments – for not only their children, but everyone who needs motivation to live life to its fullest – Bugge even published entries from a journal her husband kept during his dream-come-true sailing adventure across the Pacific Ocean on his sailboat, Stay Gold.

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he Bugge kids are also publishing a children’s book, A Hui Hou: Until We Meet Again (Brown Books Publishing, October 2020), sharing the heart-wrenching true story of this family's devastating loss. This is a story about understanding, accepting, and processing death and grief, uniquely narrated by children, for children. Izzy, Hudson, and Addy Bugge share their experience in the pure, emotional, and unfiltered way needed to help young minds grasp the impossible: the loss of a loved Title: Always Coming Back Home: An one. It takes them a lot Emotional Tale of Love, Adventure, of bravery to under- Tragedy and Hope stand why it's OK to Author: Ashley Bugge be happy that their dad gets to dive forev- Publisher: Morgan James Publishing er while also being Publication Date: September 15, 2020 Paperback: 274 pages sad because they miss ISBN-13: 978-1642799088 him so much. Available at Amazon.com The Bugge story is one of using personal stories of turning tragedy into triumph by living life with no bucket list. Bugge offers a unique perspective into what it means to overcome adversity and flourish from it. While her late husband is undeniably an American hero, we also see her emerge as the phoenix from the flames. Through Always Coming Back Home, we meet her as a young woman who reunites with her old boyfriend, Brian, and follow their incredible reunion, engagement, elopement, unexpected pregnancies, deployments, two miscarriages, and time together as a family until death did they part. But her story continues as a solo mom of three (ages 2, 4, and 6). Bugge has traveled to 30 countries (13 with her kids) and countless states with her kids (and even documented it on video). She’s suffered through depression while pregnant, PTSD, and emotional trauma, but has pulled through with sheer will and determination, taking advantage of every opportunity that comes her way.•

ONE YEAR LATER “Do you ever have those moments in life where you’re so unbelievably proud of yourself and feel guilty because you’re not supposed to feel so proud of yourself for doing something or accomplishing something? I’m sitting on this boat, off the coast of Santorni, with three beautiful, healthy, amazing kids laughing, fighting, arguing and being kids. And it’s Addy’s first birthday. One year ago, I didn’t think I’d be here today, quite honestly. And to be on this boat, in such a beautiful place in the world, exploring and adventuring with three kids, my best friends, and getting to see a part of the world I’ve never seen… I wish Brian was here, but I’m so proud of myself for making this happen. For creating this family. And for getting to celebrate these milestones. To get to sing Adeline ‘Happy Birthday,’ and to get to witness the sibling rivalry, vying for my attention. I just feel like I’ve made it. There are these pivotal moments in your life where you know that you’ve made it, or you feel successful. For me, this is one of them. I created this family, I made this trip happen, and we’re all here right now because of Brian and I. I’m so proud and grateful for this moment in time.” — Ashley Bugge, from a short film documenting their young family's two month journey across Europe

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AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE & DENTISTRY

EP’s ANNUAL EDUCATION ISSUE

“Teachers with disabilities are not 1 a handicap.” BY H. BARRY WALDMAN, DDS, MPH, PHD, LAUREN M. KOENIG AND STEVEN P. PERLMAN, DDS, MSCD, DHL (HON)

“Teachers with disabilities bring a unique perspective to the classroom.” 1 “Teachers (with disabilities) are an essential resource. They are role models for pupils with disabilities. Like other teachers, they are a valuable source of experience and expertise. Adults with disabilities in our schools help to prepare all students for life in a diverse society. (For example: in Great Britain) teachers with disabilities make up only 1 in 100 teachers. With support, this figure could be improved to 1 in 10. Social and physical arrangements are the biggest barriers to full participation by people with disabilities in teaching.” 2

LEGALITIES A series of U.S. court actions and legislative enactments have established the framework to protect and support the needs of children and adults with disabilities. A partial timeline of these events includes: • 1972 – Mills v Board of Education: Every child, regardless of type or severity of their disability, is entitled to free public education. • 1973 – The Rehabilitation Act: Prohibits discrimination on the basis of disability under any program or activity receiving federal financial assistance. • 1975 – The Education for All Handicapped Children Act: Prohibits children with disabilities from being excluded from

public schools and requires school districts to provide special services and teach children in a setting that resembles the regular school program as closely as possible. • 1979 – Southeastern Community College v Davis: Programs receiving federal funds must make “responsible modifications” to enable the participation of otherwise qualified individuals with disabilities. • 1990 – Americans with Disabilities Act (ADA): The most comprehensive civil rights protection for people with disabilities. The Education for All Handicapped Children Act is amended and renamed the Individuals with Disabilities Education Act (IDEA). 3

AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE AND DENTISTRY The American Academy of Developmental Medicine and Dentistry (AADMD) was organized in 2002 to provide a forum for healthcare professionals who provide clinical care to people with neurodevelopmental disorders and intellectual disabilities (ND/ID). The mission of the organization is to improve the quality and assure the parity of healthcare for individuals with neurodevelopmental disorders and intellectual disabilities throughout the lifespan. 10 September 2020 • EP Magazine | ep-magazine.com

OUTSIDE THE LINES: Many teachers with disabilities require nothing more than the same consideration as administrators may already be providing to its staff without disabilities, such as flexible work schedules, telecommuting or restructured areas.

THE PERSPECTIVE OF A TEACHER WITH DISABILITIES “I live being different every day,” she says. “In what other job could I make an impact on kids who live what I live?” 1 “A teacher (with disabilities like me) sharing their experiences with disability can break down barriers of isolation that students with disability often experience. Seeing how you navigate with a limitation can inspire them and strengthen their trust in the practice. This is also why I believe practicing with a group of people who experience similar limitations can be extremely valuable.” 4 Wendy, who has cerebral palsy and uses a wheelchair and a service dog, says she, too, has encountered prospective employers who couldn’t see past her disability. Nevertheless, “I’m tougher (on the children with disabilities) than the nondisabled teachers, because I know what skills they need to be able to cope in the real world.” 1

to meet the needs of English-learners or students with disabilities.” 5 Only 17% of general education teachers feel “very well prepared” to teach children with mild to moderate learning disabilities, and only 30% “feel strongly” about their preparedness to teach these individuals. More than 60% feel they are “somewhat prepared” to teach them. 6 “Most teachers want to be better prepared, but only seven states currently require future general education teachers to take coursework focusing on students with disabilities, and much of this instruction does not prepare them for the realities of the classroom. Many teachers also have misconceptions about the source of learning disabilities and low expectations for student success. They require more professional development to help them work with these students with better understanding.” 6

“Often, the only difference is that teachers with disabilities might do things differently, which could mean more efficiently and better than what others have previously done in the position.”

PREPARATION OF TEACHERS [Editor’s note: One of the authors, (LMK) with cerebral palsy is planning for a career as a speech pathologist.] “English-language learners and students with disabilities – groups of children once taught in isolated classrooms with specially trained instructors – spend more time in general education classrooms now than in years past. But many general education teachers are not equipped with the necessary skills and knowledge

DON’T HIRE INDIVIDUALS WITH DISABILITIES (MYTHS) Myths may stem from a lack of interaction and experience working with people with disabilities, which can generate negative attitudes. These myths can lead to missed opportunities when employers ignore candidates with disabilities or choose not to focus recruitment efforts on them. Myth #1: People with disabilities are not qualified applicants. Reality: There are many qualified candidates with disabilities. Often, the only difference is that teachers with disabilities might do ep-magazine.com | EP Magazine • September 2020 11

things differently, which could mean more efficiently and better than what others have previously done in the position. Myth #2: Reasonable accommodations are expensive. Reality: Many teachers with disabilities require nothing more than the same consideration as administrators may already be providing to its staff without disabilities, such as flexible work schedules, telecommuting or restructured areas. Personnel can help departments understand that accommodations ensure that a person with a disability can be productive in the same way as provided to those without disabilities to ensure their productivity. The tools may be different (e.g., a computer with a larger monitor versus a computer with a glare screen, or a desktop versus a laptop to work from home), but they are all just methods to help ensure productivity. Myth #3: School administrators can’t expect the same level of performance from teachers with disabilities. Reality: According to the U.S. Equal Employment Opportunity Commission (a federal agency that administers and enforces civil rights laws against workplace discrimination) “…an employee with a disability must meet the same production standards, whether quantitative or qualitative, as an employee without a disability in the same job.” 7 School administrators, need to realize that, at any time, any staff member or teacher could develop a disability and require reasonable accommodations.7 Note: Disabled Teacher’s Network provides resources to assist teacher’s with disabilities. As Stephen Hawking, the theoretic physicist, summed it up: “Don’t be disabled in spirit, as well as physically!” •

ABOUT THE AUTHORS: H. Barry Waldman, DDS, MPH, PhD is a SUNY Distinguished Teaching Professor, Department of General Dentistry, Stony Brook University, NY. E-mail: [email protected]. Lauren M. Koenig is a 2nd year student of Adelphi University Garden City, NY. Steven P. Perlman, DDS, MScD, DHL (Hon) is the Global Clinical Director and founder, Special Olympics, Special Smiles; and Clinical Professor of Pediatric Dentistry, The Boston University Goldman School of Dental Medicine.

References 1. Wills DK. The advantage of disadvantage: teachers with disabilities are not a handicap. Available from: https://www.edutopia.org/disabled-teachers Accessed May 21, 2020. 2. National Union of Teachers. Our right to stay in work! Making reasonable adjustments for teachers with disabilities. Available from: https://www.inclusivechoice.com/Making%20reasonable%20adjustments%20for%20disabled%20teachers%20(NUT).pdf Accessed May 21, 2020. 3. Johnson H. The History of American Accessibility Law and a Look to the Future. Available from: https://cielo24.com/2019/07/history-of-american-accessibility-lawfuture/?utm_medium=ppc&utm_source=adwords&utm_term=&utm_campaign=Dynamic+Search+A d+Campaign&hsa_src=s&hsa_net=adwords&hsa_acc=2331466663&hsa_cam=1527463645&hsa_ad =315601949186&hsa_mt=b&hsa_kw=&hsa_tgt=dsa19959388920&hsa_ver=3&hsa_grp=61239370227 Accessed May 21, 2020. 4. Bell S. Why teaching with a disability makes you an invaluable teacher. Available from: https://yogainternational.com/article/view/why-teaching-with-a-disability-makes-you-an-invaluableteacher Accessed May 23, 2020. 5. Mitchell C. Most classroom teachers feel unprepared to support students with disabilities. Available from: https://blogs.edweek.org/edweek/speced/2019/05/teachers_feel_unprepared_to_teach_students_with_disabilities.html Accessed May 23, 2020.. 6. Harper H. Report: Teachers need more preparation to work in inclusive classrooms. Available from: https://www.educationdive.com/news/report-teachers-need-more-preparation-to-work-in-inclusive-classrooms/556225/ Accessed May 23, 2020. 7. SHRM. What are some common myths about hiring people with disabilities that impede disability recruiting initiatives? Available from: https://www.shrm.org/resourcesandtools/tools-and-samples/hrqa/pages/hiringemployeeswithdisabilities.aspx 8. Stephen Hawking’s comments. Available from: https://www.azquotes.com/author/6401Stephen_Hawking/tag/disability Accessed May 24, 2020. 9. DTN's Resources for Teachers with Disabilities. Available from: https://disabledteachersnetwork.weebly.com/resources.html Accessed May 24, 2020.

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HEARTSIGHT

CHRISTINA LLANES MABALOT

Could the Future Provide Education for Learners with Special Needs? Today’s abrupt transition due to the pandemic causes a familiar feeling of unrest. But if we can view this period as unopened doors of opportunities, we would have taken the critical first step. MY PERSONAL JOURNEY “Back-to-school” was a phrase that made me homesick without being away from home. A self-directed learner, I enjoyed reading, writing, and discovering knowledge my way at home. But in school, I was accused of sleeping when my head was buried in a book while reading. To my teachers, I appeared to be kissing the paper when writing and being the center of distraction when I’d go up to the blackboard to check out diagrams or figures. Math was my favorite; it was a period for daydream galore. I would fantasize about my crushes in TV shows as teachers rambled and wrote numbers on the blackboard. There was no point listening to lectures explaining hieroglyphics on a green mega stripe that almost covered the front wall. For the most part, Science classes fed my imagination, but I sat isolated during laboratory activities. The same was true for Physical Education, Reserved Officers Training courses (ROTC), and other activities I couldn’t join.

14 September 2020 • EP Magazine | ep-magazine.com

I sat at the back of the classroom, often sleeping because I wasn’t allowed to do other projects. Textbooks were helpful if the font was large enough for me to read, or when my mother could read for me. Otherwise, class discussions around reading assignments were moments for fervent prayers that I wouldn’t get called to answer questions about the homework. I’m sure teachers knew someone else worked on projects I couldn’t do because of my visual limitations, but I was content not being reprimanded. Examinations were more a test of my patience rather than what I had learned. If the print was large enough for me to read, I’d hold the pungent-smelling mimeographed examination paper to my face, and I’d end up with black cheeks from the ink. However, if the print was too light or tiny, I was sent to the library where someone read

me the test questions. I would either type or write my answers depending on the room lighting. Term paperwork was an acid test for mental wellness. I’d record my thoughts on tape and play the recording while editing, and simultaneously type it up. Then I’d ask someone to read the copy and record it and write again on my typewriter until I was satisfied with my edits. Conscious typos were corrected with liquid paper. Once, my puppy tore up a finished article, and I fainted. I sat side by side with classmates without disabilities, mainstreamed and integrated, but not productive. My yearly report card gave evidence that I barely passed Science, Math, Practical Arts, and Physical Education. But I never failed a grade, which proves that “no student left behind” existed even during my time.

COLLEGE DAYS The first glimpse of independent learning came during my college days when I discovered the Hadley School for the Blind. I selfstudied Braille and other exciting subjects through correspondence. Since then, I’ve kept abreast of new technologies for my visual impairment. Later, in post-graduate studies, I listened to my textbooks from a four-track mini cassette player, which I also used to record classroom discussions. I knew then that technology was the bridge to productivity. So, one day, I volunteered to be the guinea pig for a Computer Science group from De La Salle University in developing software that translated text to speech for the blind. The speech synthesizer card was called VINCE, (short for Voice Interphase Computer Editor). Unfortunately, Vince’s voice wasn’t as lovely as his name. I could have sworn I was listening to ET, the Extra-Terrestrial in person. Regardless, the program was beneficial. I owe it to the group for being one of the first computer-literate projects for the visually impaired in the Philippines. I convinced my family to use the software, and we bought a PC XT with 512 Mb of ram, booting from DOS 2.0, which, at that time, was state of the art. Empowered with word processing skills using Word Perfect, I ventured into public relations consultancies, which I did after work hours in my school. Later, we read a magazine of the American Printing House for the Blind, which featured the “ASAP” or Automatic Speech Access Program. In the ’80s, access technology cost my parents a hefty part of their retirement money. However, the investment set us up for the future. Thus began my personal journey to digital transformation. I remember when I first heard the news that personal computers were available to the public, I felt a sense of despair. I thought people with disabilities, especially the visually impaired, would be more marginalized. There would be a digital divide between people

with special needs and the mainstream, as wide as the gap between the moon and earth. Then, it seemed impossible to make visual input and output for computers accessible to those who cannot see. But the digital divide turned into a digital opportunity, thanks to adaptive technology. My story paints assistive devices as the bridge for people with disabilities to crossover from the dark ages of “welfare-ism” to the renaissance of “inclusion” in education and employment. Access technology has conquered several of the information and communication barriers earlier in my lifetime. No doubt, history can repeat itself. Reflecting and understanding the past could help in making sense of the present and thriving in the future. My niece, also with aniridia symptoms, recently testified that she averaged 4.0 when her classes were switched online. Her grades were a far cry from her usual average of 2.5 when attending physical classes. Accessibility features of her computer-enabled her to see what she couldn’t have on the classroom whiteboard. Worksheets were readable with the magnifier app, and submitting digital papers was a walk in the park. On top of it all, she didn’t feel self-conscious about delivering a speech through video, wearing house slippers. Another relative who is blind finished his Bachelors in Business Administration with summa cum laude honors. Whoever thought that people with disabilities could evolve into geniuses through digitalization?

WELCOME THE CHANGE Today’s abrupt transition to a completely digital, automated, and virtual world due to the pandemic causes a familiar feeling of unrest. Adverse reactions to new ways of doing things are as constant as change itself. But if we can reset our minds to viewing this period as unopened doors of opportunities, we would have taken the critical first step. I’ve advocated for digital learning for the longest because

THE MOVE TO INCLUDE: If innovators would be incentivized to create more adaptive tools and accessible technology, the postpandemic possibilities for education would be inclusive for students with special needs. And we, the parents, teachers, and the community could unite to catalyze the changes needed for e-inclusion.

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it eliminates most of the information and communication barriers caused by disabilities. But accessibility components need to be integrated into the virtual learning environment. The following are vital considerations to make remote and e-learning inclusive for people with disabilities.

LEARNING MANAGEMENT SYSTEMS The Learning Management System is the software used to create and deliver content to learners. It is also called a platform, and it provides the means of interactive communication between the teacher and learners. Students’ performance and progress are automatically tracked and evaluated by the software. The learning management systems are virtual classrooms. A learner who can’t navigate the platform is like one who can’t get in a physical class. The good news is, several platforms have accessibility features that could make students with disabilities feel at home in the virtual learning environment. There should be a platform that could transform your child’s schooling to a learning playground. In case there isn’t one yet, you could request learning modules to be loaded on a USB flash drive, or learning videos that could be played on the TV monitor. Some activities or seatwork could also be assigned offline. Blending extensive modalities with the digital classroom may help a child who needs variety to sustain his interest.

ADAPTIVE AND ASSISTIVE TECHNOLOGY It isn’t true that physical, sensory, intellectual, behavioral, or other special needs prevent your child from accessing information digitally. On the contrary, as previously mentioned, adaptive and assistive technology systems, equipment, and software could cross most of these barriers. There is a wide range of incredible technology available in the market that could bridge the digital divide. Assessing your child’s learning barriers and consulting the experts are vital in identifying the right technology. Some examples are alternative keyboard and mouse, speech to text technology, alternative communication systems, Jouse (a mouth-controlled USB joystick). 16 September 2020 • EP Magazine | ep-magazine.com

ACCESSIBLE CONTENT, INTERACTION AND ASSESSMENT TOOLS We could appreciate e-learning better as we discovered that it offers a universe of options for presenting the information. Adapting educational content to the need and learning style of a student has never been more accessible through technology. For example, suppose a student can’t remain attentive and focused on a webinar lecture or text document. The same information can be presented through concept maps, multi-media methods, hands-on learning activities, or by adding graphics and animation to the same material. The appropriate content format capitalizes and enhances a child’s learning strengths and abilities. Hand in hand with accessible content is the opportunity for a child with special needs to interact with the lesson. There are several ways a learner could show off what he or she has learned. Technology gives each child the freedom to express responses according to his or her communication strength. For instance, a child with limited verbal communication skills shouldn’t be restricted to recite answers to the teacher’s questions. The learner should be allowed alternative methods of communicating responses, like communication boards, symbols, polls, and many others. There isn’t a one-size-fits-all assessment tool that evaluates the student’s mastery of content. Still, whatever system is used, it should accurately reflect the child’s grasp of the lesson. As an adult, I’ve experienced loading training courses that present slides of images my speech software couldn’t read. I could do as much as go through the slides without a clue about the information presented. In the end, there were assessment questions to which I guessed the answers from multiple choices. My score would depend on sheer luck. I’m happy if I passed and didn’t care if I failed. Imagine this scenario for students in our community. A good insurance policy for laptops and tablets would be helpful if they get a beating from frustrated learners. Whether in the physical classroom or the virtual learning environment, teachers should encourage student participation. Taking part in activities that learners enjoy, like interactive games, projects relevant to their lives, or giving them the freedom to choose how to apply

knowledge (e.g., growing plants for Biology) is a sure-fire way to motivate the pursuit of knowledge. Whatever activity is used, it is essential to cultivate a student’s love for learning to ensure continuity for life-long education. Yes, the future could provide education for learners with special needs. If innovators would be incentivized to create more adaptive tools and accessible technology, the post-pandemic possibilities for education would be inclusive for students with special needs. And we, the parents, teachers, and the community could unite to catalyze the changes needed for e-inclusion. Together we can make it happen. At this point, another relevant question is, “Could education provide learners with special needs a future?” As a former educational leader, I recommend that teacher education be revised, and Special Education be re-oriented to accommodate the ever-changing goals and methods of education in a rapidly-evolving era. Another suggestion is to consider the universal design for education. I believe the principles support education for all learners, and focusing on learning strengths instead of disabilities. The process may involve long-term planning and implementation, but it is doable, considering how we evolved to get this far. And, if we advocate to start the process today, we can reshape the future for our community.•

HEARTSIGHT Christina Llanes Mabalot is physically blind from aniridia, but has a vision. She enjoys touching people’s lives to bring out the best in them. “Heartsight” explains her ability to see with her heart. Christina earned her B.A. degree and Masters in Education from the University of the Philippines, Diliman, specializing in Early Intervention for the Blind. She later received Educational Leadership training through the Hilton-Perkins International Program in Massachusetts, then worked as consultant for programs for the VI Helen Keller International. She has championed Inclusive Education, Early Intervention, Capability Building and Disability Sensitivity programs. She was twice a winner in the International Speech contests of the Toastmasters International (District 75) and has been a professional inspirational and motivational speaker. Christina is blissfully married to Silver Mabalot, also physically impaired, her partner in advancing noble causes. Their children are Paulo and Jem, who has aniridia.

PATTY CARLSON'S TONAL SEQUENCING PROGRAM The US Patented Numeric Language of Music® program is a simple mathematically based sequence of musical tones played on a piano or electronic keyboard. Over a period of three months study, parents have reported their children’s math and reading scores increased from D’s and failing to 98 and 100%. Tested with Alzheimer’s, Parkinson’s and long term stroke disability, symptoms reversed in all three cases. The program successfully reversed symptoms for children with ADD, ADHD, Asperger’s syndrome, and Childhood Apraxia of Speech.

HIGHLY RECOMMENDED for CHILDREN OF ALL AGES! We believe the Numeric Language of Music® program has discovered a defned mathematical language of tonal progressions to which the circuitry of the human brain responds. Similar to computer code, it is possible we are at the door of tremendous understanding of an innate, inherent language of the human brain. The implications of an access code initiating accelerated cognitive and remedial capacity are far reaching in all aspects of potential application.

We are seeking collaborative research testing of the Numeric Language of Music® to establish concrete scientifc evidence of our hypothesis. Interested Science and Academic Institutions are invited to contact us by email: [email protected] ©2020 Patty Carlson All rights reserved.

PIANOFORSPECIALNEEDS.ORG

ORGANIZATION SPOTLIGHT

OUR ODYSSEY Our Odyssey was born in June 2019 with a mission to connect young adults impacted by a rare or chronic condition with social and emotional support in the hope of improving quality of life.

BY SETH ROTBERG

There are over 67 million young adults1 in the US who are between the ages of 19-34. I would say that about 10.2 million 2 of these young adults live with a rare or chronic condition (there is no data about this in the rare disease space). These young adults face many different challenges compared to older adults or children impacted by a rare or chronic condition. I am one of those young adults.

A

t the age of 15, I learned that my mom had a rare, neurological disease known as Huntington’s Disease (HD). My family and I believe my mom had this disease five to seven years prior, but was misdiagnosed (like many rare diseases). Five years after finding out about my mom’s diagnosis, I decided to go through genetic testing and found out I tested positive for HD. This means that one day, I may end up just like my mom, unless there is an effective treatment or cure. Growing up with a mom who was slowly losing her battle to a rare disease wasn’t the easiest thing. In fact, I felt a bit different from my friends because they didn’t truly understand what I was going through. During those first couple of years, I had to take on additional responsibility at home, including running errands for my mom and helping her out with household tasks that she was not capable of doing. 1. www.kff.org/other/state-indicator/distribution-by-age 2. www.cdc.gov/mmwr/preview/mmwrhtml/mm5825a3.htm

18 September 2020 • EP Magazine | ep-magazine.com

Shortly prior to testing positive for the disease, I met my first other young adult who came from a family impacted by HD. I remember meeting her my Sophomore year in college and felt like I knew her for years because she understood everything I was going through without having to explain ABOUT OUR ODYSSEY: anything. I finally felt like I could let my guard down and open up to someone else who “simply gets it.” It was during this moment that I The mission of Our Odyssey is to connect young adults impacted by a rare or chronic realized I wanted to condition with social and emotional support in connect with other the hope of improving their quality of life. Our young adults in the Odyssey’s vision is to grow into a nationally HD community who recognized organization which will address all can lean on one of the challenges that young adults with rare and chronic conditions face, to furnish a platanother for support form for connection, and supply the resources when needed. to enable them to thrive. Our Odyssey’s values As I started getting are collaboration, empowerment, belonging, more involved in the hope, inclusivity and being purpose-driven. HD community, I came across two great groups – HDSA’s National Youth Alliance (NYA) and the Huntington’s Disease Youth Organization (HDYO). HDSA’s NYA falls under the national organization and runs like a chapter, while HDYO is its own international nonprofit solely working with young people impacted by HD. Both of these groups provided some amazing support and resources to me as I was navigating my own health journey.

GATHER AROUND: (Above) A February in-person Our Odyssey meet-up in Boston was followed by a virtual meet-up in April (left). What we have learned from our virtual meet-ups is how many young adults in the rare and chronic communities are motivated to connect with others in order to discuss relevant topics, including their unmet needs. In 2018, I had the opportunity to do a TEDx talk 2. Although some disease-specific patient advocacy organizations have (www.youtube.com/watch?v=5_O5TfMVqD8&t=) on my genetic testing story. It begun to acknowledge the needs of this demographic, currently was during this talk that I discovered the larger rare disease comthere does not exist an organization dedicated to providing yearmunity beyond HD. I started learning more about the rare disease round services for young adults in the rare disease community. landscape by connecting with others in the community. That is As mentioned at the beginning, there are over 10.2 million young when I met my first young adult adults living with a rare or chronic outside the HD community, Anna There are over 10.2 million young condition. Many of them are simiLaurent. When Anna and I hopped lar to me, where they are looking to adults living with a rare or chronic share their journey with their peers on a call, we immediately realized condition. They connect with how much we had in common as in the health space. Even more, young adults impacted by a rare they connect with young adults at other young adults at national disease; coping with a health contheir local or national conference conferences, but then return to in their community, but then dition, talking with others about the condition, and the list goes on. their everyday lives and become return to their everyday lives and become disconnected from their disconnected from their peers. ow many more young peers. adults are out there, like After doing more investigating Anna and me, who are looking to connect with another and realizing this unmet need, I decided to create a nonprofit that young adult who understands what they are going would provide year-round programming for young adults impacted through? I realized two things: by a rare or chronic condition. Our Odyssey was born in June 2019 1. HDYO is one of its kind and there aren’t many other disease-spewith a mission to connect young adults impacted by a rare or cific organizations focusing solely on young adults. chronic condition with social and emotional support in the hope of

H

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improving quality of life. This provides an opportunity for young over 32 states, 6 different countries, and over 120 different rare and adults to remain connected and continue the conversations of rel- chronic conditions. evant topics, including the unmet needs among young adults. Prior to the COVID-19 pandemic, we were hosting in-person ur Odyssey didn’t happen overnight and had a lot of meet-ups in Boston, Philadelphia, and Washington DC. These meetgreat people who supported us from the inception. If ups are a chance for young adults to meet and network with other you’re interested in supporting young adults impacted young adults who understand what they are going through. The goal by a rare or chronic condition, then reach out to us. We is for young adults to leave each meet-up with a sense of belonging are always looking for passionate people who want to make a difto a community. One young adult said “It was so special to connect ference in the community. Join us and become part of the Odyssey with extraordinary humans, living journey!• their extraordinary lives with The goal is for young adults to ABOUT THE AUTHOR: extraordinary obstacles. How leave each meet-up with a sense amazing it is to meet people who Seth Rotberg is a of belonging to a community. just get it. I’m honored to be a part community connector, motivationof Our Odyssey’s growing family.” One young adult said “It was al speaker, and coPre-pandemic, we were planning founder of Our so special to connect with on adding quarterly virtual meetOdyssey who is ups. However, our planning shifted extraordinary humans, living passionate about right away and decided to host bringing his pertheir extraordinary lives with sonal experience to weekly virtual meet-ups to keep better support the health community. He extraordinary obstacles.” young adults connected while livhas over 11 years of fundraising, advocaing with the uncertainty of the pancy, and volunteer experience within the demic. What we have learned from our virtual meet-ups is how health space. His passion is driven by his mother’s 17-year battle with the rare, many young adults are in need of connecting with others in the genetic disease known as Huntington’s Disease (HD). He has a master’s in rare and chronic communities. We have been able to cast a larger nonprofit management from DePaul University and currently resides in net and to date have connected with over 300 young adults from Cambridge, MA.

O

20 September 2020 • EP Magazine | ep-magazine.com

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EP’s ANNUAL EDUCATION ISSUE

THEY CALL IT

“HIGHER”

EDUCATION

HIGHER CALLING: Dr. Lisa Coleman,

BY MICHAEL JOHN CARLEY

Senior Vice President of Global Inclusion and Strategic Innovation at New York University 22 September 2020 • EP Magazine | ep-magazine.com

PHOTOS PROVIDED BY MICHAEL JOHN CARLEY

To be clear: This is an article… about my new boss. Ok, it’s also roughly about disability culture as it exists on most American campuses. But it’s an unabashed tribute to my new employer, and by writing it, I’m daring and/or inviting readers to bludgeon me with multiple accusations of conflict. Bring it on. I’m a terrible liar, and at the very least, New York University’s Dr. Lisa Coleman needs to be noticed. She is different, and she is succeeding – at creating sustained and transformational change.

The Baggage I Bring! In my almost 20 years in this field – running non-profits, school consulting, writing – my dalliances with American colleges revealed their commitment to optics, the corporate bottom line, or to heartfelt but sadly ineffective gestures meant to offset the negative optics of… protracted neglect. While there were some notable efforts in design or implementation, at Marshall, for instance, or at a smattering of international schools, neurodiverse students generally feel kindly tolerated rather than valued on their campuses – supposed incubators of intelligence itself. Too often, funding leftovers, thrown out by administrations to the luckier accommodations/Student Disability personnel, were advertised as successes to keep the vain hope alive that more would follow. “Here’s $1,000 for a student event,” “$2,500 for a (pretty limited) ‘conference.’” Residential add-on programs for autism spectrum students (like old buddy Michael McManmon’s College Internship Program) thrived, but at fees north of $50,000 per year that were/are in addition to tuition. When I ran GRASP, then the largest membership organization in the world for adults on the autism spectrum, I believed, and thrived on a philosophy of “partner, partner, partner” (the verb). Regrettably most Disability Studies departments all over the country couldn’t be bothered to follow-up when I asked them to join us in such no-brainer alliances – removing words like “cure,” battling emotionally-damaged vaccine theorists, or stopping the use of electric shocks on unsuspecting human beings in institutions. My outreach didn’t get “no’s. Mostly, they received silence from these surprisingly isolationist entities. And, to debunk some myths, these disappointments weren’t just at financially struggling, small schools. From my perspective, the wealthy universities were just as guilty, if not more, because they should know better. Many schools are struggling, but we can and should feel free to question their priorities. For some, the highest paid employee is the football coach, and perhaps (gag me) this is of real fiscal value for that institution. But universities must be more than a playing ground for athletes. These are sites of education, where values are cultivated and instilled, and as such must also act

on the values that underscore innovation, and curiosity in diverse learning sites, for diverse learners. To simply accept the excuse to discriminate or not fully support persons with disabilities due to financial limitations is to miss the opportunity to embed diverse learning values, systems, and related actions in our educational institutional practices. Coleman: “Universities, like other institutions, can be incredibly risk-averse and far too often invention and experimentation is limited. Higher Educational Leaders must not simply rely on their expertise, but must also be curious, learners who take informed risks, and who highlight the important assets of diverse groups, people, etc. because we know from ample amounts of research that this is where innovation will thrive.

Dr. Coleman Lisa Coleman is NYU’s Chief Diversity Officer (CDO) and she leads their Office of Global Inclusion and Strategic Innovation (OGI), of which I am now a grateful team-member. The office works not only with NYU’s New York City campuses, but across all of their global sites, including Shanghai, and Abu Dhabi. Coleman is not a CDO who is only focused on “race and gender.” She is well versed in American Sign Language (ASL). She has lived and traveled extensively all over the world. Her department’s core personnel are filled with not only influential women and scholars of color, but also a much higher percentage of LGBTQ+ leaders than similar departments at other schools. She is respectfully teased for having many friends in their 80s. She regards income discrepancy as one of the major factors that plagues the world. Her approach is global and intersectional. In short, she’s real D&I. Coleman grew up in mid-sized cities in Cuyahoga County, Ohio. Neither rich nor poor, she was a child to a company manager father and a computer scientist mother, the latter of whom made it a conscious or unconscious point to surround her with powerful adults. Coleman was also partially raised by a grandmother, a former NYC and Chicago jazz pianist who lived to be 98, and who lived with them off and on throughout her childhood. As a teenager Coleman learned her ASL working at the Alexander Graham Bell School for the Deaf (whose Principal was a

“To not fully support persons with disabilities due to financial limitations is to miss the opportunity to embed diverse learning values, systems, and related actions in our educational institutional practices.”

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TURNING THE TABLE: “Dr. Coleman will not be silenced by previous, near-universally-accepted protocols. She will do the hard work, listen, and then act in support of those most in need. This is what she just seems to do, and she knows there is much more to be done.” friend of Coleman’s mother). Through her volunteerism as a younger person she worked with several women’s organizations and homeless shelters, wherein the issues of income disparity and socio-economic disenfranchisement would greatly influence Coleman’s outlook. “I've always had a lot of questions and so in my teens I inquired repeatedly about why things are the way they are. So, it was like a wake-up moment… Things I had been told though various systems of education about ‘the homeless’ had been a little bit of a lie. No one wants to live impoverished and on the streets!” Now, at NYU she has created a new consultancy role (COVID-permitting, soon to be a Directorship) focused on global disability inclusion – Director for Disability Inclusive Culture. No institute of liberal higher learning on planet earth has created any such position so dedicated to the care – be it through issues of accessibility, or neurodiversity – of their disabled community. She, the post, and the institution, are that advanced.

University’s Special Assistant to the President and CDO, reporting directly to the first female President of the University. On both campuses she excelled. However, she states that there has been a great deal of evolution in the quality of the disability work that she implemented. “I started (my disability work) at Tufts, doing what would now be considered lower-level, compliance-oriented disability work (this was true in other diversity related areas as well) and this was about the time period, not so much about the institution. However even then something about that wasn’t sitting well with me. I began to experiment a bit at Tufts, and when I got to Harvard, I was able to expand my experiments, and follow my curiosity to be more innovative and take some more risks to expand this work.” There, she reached out and hired educational luminaries in the disability space, working with Harvard’s engineering school she developed an app for the students with disabilities – her curiosity continues to allow her to explore, be proactive and inventive. “It was then that I started really thinking more about innovation and what it means to BE innovative… And so [in late 2017] when I came to NYU, I realized this was about culture… not just about individual practice… If we’re talking about universal access, universal design, design thinking and all those kinds of things... That’s not going to happen simply through accommodations. That’s not how it works. So, that is how we came up with this idea of Disability Inclusive Culture. And, yes, I do hope it changes the landscape for how we at

“I realized this was about culture. If we’re talking about universal access, universal design, design thinking – that’s not going to happen simply through accommodations.”

Career After various consultancies, faculty appointments, and some dalliances in the corporate world, Coleman launched her administrative career at Tufts University in 2000, first as the Director of the Africana Center, and then as the (2007) Executive Director of their Office of Institutional Diversity. Then in 2009 she left to become Harvard 24 September 2020 • EP Magazine | ep-magazine.com

universities and other types of organizations approach this work… because to serve our diverse populations and transform organizations we must take cues and learn from our multifaceted, intersectional, and varied communities, and that is not just about disability.” Coleman received her B.A. from Denison University majoring in Sociology and Anthropology with a focus in computer science, and her current NYU post is a homecoming to where she got her Ph.D. (in Social and Cultural Analyses specializing in American Studies). But her Masters degrees (in Women’s, Gender and Sexuality Studies; African and AfricanAmerican Studies, and Communication Studies) came from Ohio State (OSU). I asked her if she remembered the 2009 controversy when then–OSU President, Gordon Gee, made the mistake of publicizing OSU’s Autism Speaks affiliation, as well as supporting Autism Speaks’ walk, farcically unaware of how loathed that organization is by scores of parents as well as the vast majority of people on the spectrum.1 “Oh yes!” she laughs, remembering quite well. “Gordon Gee was a great President in a lot of ways, but he also made mistakes, just like we all do… I’ve made a lot of mistakes.

There’s very little forgiveness for leaders these days. (And because of that) I’m someone who was dragged kicking and screaming into leadership.” That said, she began to fall in love with a new mode of leading – questioning, learning – and it is then that she began to explore what inclusive leadership could look like. “I’m an interventionist. That’s the whole point to being an inclusive leader. My default is transformational and educational, not punitive.” Though interventionism is a value I share with her, I challenged her, utilizing the biggest criticism that interventionists must always face – that intervening is often seen (by the “intervened”) as a violation of the right to privacy. When we are interventionists we become meddlers, we do not “mind our own business,” we get in there, we get involved in other people’s affairs. Coleman was quick to respond: “We live and work in communities. Even as an innovator or entrepreneur we have to work with others, right?… Even if one is a quote unquote isolationist, the question becomes – who do you want to isolate with? So, yes, we can try to mind our own businesses, but often our businesses are interconnected because we live, learn, and work together.”

“We live and work in communities. So, yes, we can try to mind our own businesses, but often our businesses are interconnected because we live, learn, and work together.”

1. https://asansouthwestohio.blogspot.com/2009/09/self-advocacy-at-ohio-state-university.html

“Sidebar, your honor? Some potentially inappropriate material has come up…” The post that Coleman has created for Disability Inclusive Culture is also landmark for two other reasons; both of which people on the autism spectrum will cheer. One, a person with a disability was actually going to occupy this post. Two (and this is where the spectrum comes in, as other disabilities have made stronger gains herein…), the compensation package is equal to what is commensurate with the earnings of a neurotypical “expert.” Many people in the autism world know that I am not, shall we say, an inexpensive speaker. Of the small number of people on the spectrum who also work in the field, there is only one other person in the world who has the impudence to charge more. I won’t look at you, the reader, and tell you I deserve what I charge conferences, or institutions. But a crucial step in eliminating the negative stigma of neurodiverse folks like myself involves our experiences being valued the same as the world seems to value the neurotypical “expert.” The bottom line, and not the “thank yous,” is unfortunately where the proof of real appreciation often lies. I willingly lose a lot of speaking opportunities because of my firm negotiation policies (for instance, and because of their practices, I have twice fielded inquiries, but have never spoken for the Autism Society of America). And I admit that at times this is not a strategically-sound practice. Our lived experiences are of at least equal value to that (however wonderful) fellow speaker at the same conference — be it the clinical psychologist, or the brilliant scientific author. At most autism conferences,

attendants now tend to report having learned more from speakers who are on the spectrum than from the others who take the podium. So sometimes there seems to be a disconnect when it comes to fair and equal compensation. We all are aware that the answer has a lot to do with the market that exists, as opposed to the market people like me, others on the spectrum, and Dr. Coleman are striving to create. But I continue to engage in these practices because when I get a proper gig, I am then also able — not in gratitude, but in recognition — to freely praise the sponsoring organization, for they have demonstrated, in action, that my opinions and experiences, as well as those of others like me, are valued as much as they are of neurotypicals. I also have a responsibility, given how lucky I’ve been, to encourage other spectrum people to take themselves more seriously, and to understand that our time is worth so much more than we too often are taught to think.Coleman’s new disability inclusion position (which yes, I now occupy) is important because a person on the spectrum is being compensated at the equivalent level to what the neurotypical PhD would have received. That said, it is also revolutionary because of the way these ideas are being embedded into the fabric of the institution. One may feel free to criticize the decision of who they hired, but not the innovative fairness of the post. That part is indisputable. (“Thank you, your honor. I’ll continue again now.”)

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ASKING QUESTIONS: Dr.Coleman as a young girl (left) and (right) presenting at Harvard University. “When I got to Harvard, I was able to expand my experiments, and follow my curiosity to be more innovative and take some more risks to expand this work.”

Dr. Coleman and Intersectionality Many people want to do work related to inclusion, and some of us who need to do this work are lucky enough to find positions that are right in line with this necessity. But Coleman would not be Coleman without an administration that allows and encourages her to do this work. NYU supports the work, and they support her… with funding, resources, and a commitment to finding their way together when there is a challenge. “[NYU] is marvelously innovative. That’s one of the primary reasons I came here… they’ve taken it as they say – to the next level globally and locally. When I came in… I was very concerned with a lot of the issues brought to my attention with facilities and other accommodations, and making sure we closed the gaps, so initially I was paying attention to these areas. But that’s not where I wanted to end – I wanted and continue to want to explore, imagine, and grow the innovative, the possibilities.” Referring to the Shanghai, Abu Dhabi campuses and the other sites across NYU, that Coleman’s OGI also oversees, she confessed that it has not always been smooth sailing. “NYU went out into the global space at the same time these other universities either went out and failed, or some who simply 26 September 2020 • EP Magazine | ep-magazine.com

said –‘No; This is too scary.’ And, even at NYU things weren’t going perfectly all the time, but as an institution we were willing to experiment, to take measured chances, to learn from our mistakes, to iterate, test and develop new prototypes, new ways of being and doing. Whether that is in Abu Dhabi, Shanghai or any of our other global sites we are willing to take educated risks; and this is one of the differentiating factors that makes NYU unique; we are innovative, risky, entrepreneurial, global, inclusive and DIVERSE – in all of its meanings.” Topping off Coleman’s innovative aura is a philosophy that the real and thriving D&I work can be effective only by embracing the concept/reality of intersectionality (when we occupy the space of more than one element of Diversity & Inclusion). Now my ideas prior to consulting for NYU and OGI were a little different: I was raised on the concept that the intersectionality work could not begin until after you fully understood the implications of each element/space that you inhabit therein – the autism part, the queer part… like two people needing to be whole to give a new relationship the best chance at success. The “2” couldn’t flourish unless both “1”s knew themselves well. But in my early days I am already converted to Coleman’s version: that while we do need full understandings of our blackness, our queerness, our disability – our historical marginalization, if not genocide, we also need to combine this understanding with the complexity of simultaneity. This is recognizing that some do not get to choose their race, gender, or disability one over the other because for them they are all these identities at the same

time and one is not more important than another aspect of identity; they are all important. It is often the outside world that tries to force choices or make one identity singularly more important than another. With this recognition we allow ourselves and others to embrace the intersectional, the complex, and the innovative. To adhere to my prior notions is to forever put the intersectional possibilities, and all its potential learning, on a shelf, for “maybe at a better time.” But there is no finish line when exploring the elements of who we are. There are simply unending possibilities to imagine fairness, equity, and inclusion… and our meager or great efforts to make it our reality. Coleman’s equally brilliant team underscore this work in every aspect of what they do, having bought into her vision hook, line, and sinker. It is this element of Coleman’s philosophy that paints the biggest picture. “When we are intersectional and focused on those most vulnerable… we can advance and build more universal capacity and encourage the creation of more equitable, more courageous and more action-oriented, inclusively innovative communities.”

she just seems to do, and she knows there is much more to be done. NYU, like many others, has work to do, but it is far ahead of the vast majority of institutes of higher education. Credit also extends to the top, with NYU President, Andrew D. Hamilton and the Provost, Katherine Fleming. But my personal admiration, awe, and appreciation is for Coleman’s brilliant team; my new colleagues that include folks like Dr. Karen Jackson-Weaver, Monroe France, Sean Corlett, Leah Lattimore, Dr. Chandani Patel, Chris Woods, Christopher Paul Roberts Griffin, Dr. Autumn Rain, Tera Nakata, and partners across the University such as Dr. Faye Ginsburg, Karen Nercessian, Robyn Weiss, Kristie Patten, Mara Mills, and many others. One of Coleman’s mottos is to work with “joy;” so it is also an environment that works so well with each other that to the newcomer it can feel intimidating. However what is not only gratifying, but sometimes seemingly astonishing, is that they all seem quite open to integrating someone who does not read minds well, who uses dramatic language, processes thoughts, experiences, and emotions differently, and who asks them to mean what they say, and say what they mean. Is this what inclusive innovation and leadership might look like? The “reality” is that for many so-called progressive institutions – including D&I departments – D&I exists to solve a problem. Not for Coleman. For her, D&I is about our collective strengths, and embracing our interconnected futures together. Those dedicated to sustained D&I progress never defend a decision with statements such as “Well, the reality is that this is the way things are.” Instead, they support the idea that “this is the way things can be.” Coleman goes further: “It’s also about new ways of doing and being. We must be willing to try, and to maybe make mistakes, because the possibilities are endless if we bring together diverse communities and minds together atypically. Sometimes when people look at people with disabilities, or people who are gay, trans, or black… they look at us as their problems; as something that needs to be fixed. But I do not think that at all, I think (I know) we are the assets. And WE are the future. The question is – are you, whoever you are, ready, for OUR future?”•

“It’s about new ways of doing and being. I know we are the assets. And WE are the future. The question is – are you, whoever you are, ready, for OUR future?”

Conclusion As one might imagine, given the recent protests across North America, Coleman has been understandably busy. As a person of African descent (Black person) and as the inaugural CDO of NYU it was important for her to write to the NYU community2 following the murder of George Floyd, if not also so many other horrific acts of violence, xenophobia, and discrimination. But Coleman’s statement was a little different... After a Google search of “statement on black lives matter,” I took the first ten entries composed by companies and institutions within the last month. The ten statements averaged just under 500 words (499.22222): The longest statement was 660 words, and the shortest was 192 words. Usually, statements such as these are drafted with lawyers, PR people, and adhere to a length that fully satisfies people with increasingly short attention spans. These statements, as I read them, are often written to not alienate potential sources of income, or customer/client bases. Some of the authorships actually state that they can “only go so far.” These statements can then be read as conciliatory, or even contrarian obligations. Coleman’s statement was 1189 words. It was contextual. It was historical, and contemporary. It was different. The fact that the content within her statement was universallypraised is no surprise. She is a brilliant, established, higher-education thinker (and learner). It is her refusal to adhere to the safer length of this statement that separates her from her peers, that states loud and clear that she will not be silenced by previous, near-universally-accepted protocols. She will do the hard work, listen, and then act in support of those most in need. This is what 2. https://www.nyu.edu/life/global-inclusion-and-diversity.html

ABOUT THE AUTHOR: Michael John Carley is the Founder of GRASP, a school consultant, and the author of Asperger’s From the Inside-Out (Penguin/Perigee 2008), Unemployed on the Autism Spectrum (Jessica Kingsley Publishers 2016), the upcoming Book of Happy, Positive, and Confident Sex for Adults on the Autism Spectrum… and Beyond!, and the column, “Autism Without Fear,” which for four years ran with the Huffington Post. Currently he is the Consultant for Disability Inclusive Culture at New York University, a writer for many, and on Mondays he sees individual clients. For more information on Michael John, or to subscribe to his free newsletter, visit www.michaeljohncarley.com

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EP’s ANNUAL EDUCATION ISSUE

Through catastrophe, there is great freedom and through freedom, discovery. Without this critical discovery, we remain stuck in our patterns, and this leaves us (and our children) without success.

REDEFINING CATASTROPHE LESSONS FROM THE ‘NEW NORMAL’ B BY JENNIFER BOGIN, MSED, BCBA, LBA

“I thought the world had ended and we were screwed,” Sarah Weirich, single mother of nine-year-old Tristan was just as freaked out as the rest of us on March 13th, 2020, when she got a message saying her son Tristan, who has severe (level 3) autism spectrum disorder (ASD), didn’t have school for a week due to the COVID-19 outbreak in Massachusetts. A week turned into two and before she knew it, Tristan didn’t have any in-person services for five months and counting. 28 September 2020 • EP Magazine | ep-magazine.com

efore the pandemic, Tristan was in a public school special education program for children with autism with a fulltime 1:1 Paraprofessional. At home, Tristan had private speech therapy and in-home Applied Behavior Analysis (ABA) services up to 20 hours per week. Sarah and Tristan’s home resembled a revolving door of therapists, Behavior Analysts, and Behavior Technicians all week long. As any parent or caregiver of a child on the autism spectrum will tell you, transitions are hard. According to the Autism Society, one of the nation’s top non-profits dedicated to improving the lives of all affected by autism: “Transitions are often difficult for people on the autism spectrum and their families. People with ASD usually rely on routines to navigate social situations, and a

PHOTOS PROVIDED BY JENNIFER BOGIN

sudden schedule or lifestyle change, such as beginning school, graduating, or starting a new job, can be very disruptive and discomforting.” In light of this, the extreme disruptions that result from a global pandemic unlike any in the past century could be catastrophic for Tristan and Sarah and other families like them. However, with a lot of ingenuity, a strong support team, and a passion for meeting her child’s needs, Sarah was able to do it. As Sarah, herself states: “It actually turned out better than anticipated, a lot better.” Initially out of necessity, Sarah redefined the pandemic. She saw opportunity where others only saw catastrophe. To be clear, Sarah is unique but not uncommon. Every day I am impressed by the dedication and strength that parents of children with autism exhibit. They are truly warriors in the best sense of the word. It is simultaneously true that many, many parents struggle to meet the needs of their children regardless of diagnosis, ability level and developmental needs. Sometimes the best we can do is get out of bed in the morning and put one foot in front of the other. This story is not meant to shame or blame. We all do the best we can and many people need assistance that never comes. In her podcast, On Being, Krista Tippett cites her friend, the Rev. Jen Bailey as saying “the original Greek, apocalypse doesn’t mean the catastrophe; it means the uncovering. And this crisis, this virus, is uncovering a lot of things. It’s uncovering kindness and generosity. It’s uncovering things that we didn’t know we knew how to do...” Perhaps ABA and other types of therapy for children with autism are uncovered skills. Perhaps, with the right support and training, parents and caregivers can provide their children all the therapy, support, and teaching they need.

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irst authorized in 1986, the Program for Infants and Toddlers with Disabilities (Part C of IDEA) is a federal grant program that assists states in operating a comprehensive, statewide program of early intervention services for infants and toddlers with disabilities. The law also mandated that these comprehensive services be provided in “natural environments” which are is defined as "settings that are natural or typical for a same-aged infant or toddler with-

out a disability.” For many, that meant services were held in home environments with the parents or caregivers as the primary target of services. While not mandated by the government, parents and caregivers have been educating their children with special needs and developmental disabilities in their homes for years. Somehow the advent of in-home ABA pulled parents out of the spotlight and suddenly it was considered ‘alright’ or even ‘preferable’ that the parents didn’t participate in the sessions. Over the years, this issue has been brought to my attention when numerous parents (including Sarah Weirich) have complained to me that even well-meaning ABA providers say things such as: “they said I [the mother] was the problem” “I was distracting to my kid’s learning” “shouldn’t apply the techniques because I’m not trained in ABA” and many more. So, is it any wonder that we leave our parents/caregivers frustrated? Isolated? Lacking the skills they desperately need? On the other side of the coin, children with ASD become more rigid, stuck, and dependent on all the adults and therapists coming in and out of their lives. And we STAYING CONNECTED: wonder why transi(Above) Tristan tions are hard for participates in a them? Assistive and In their 2008 publiAugmentative cation, “EvidenceCommunication. Based Comprehensive Session. (Right) Treatments for Early Noise cancelling headphones can Autism,” Rogers and be an effective Vismara discuss the incentive in the inception of intensive integration of Applied Behavior newly developed Analysis (ABA) services therapies. in homes and schools. “In 1987 and 1993, Lovaas and colleagues published articles describing the “recovery” of almost 50% of a group of very young children with autism, treated intensively with applied behavioral analysis for several years (Lovaas, 1987; McEachin, Smith, & Lovaas, 1993). These articles suggested an entirely new way of thinking about autism: as a disorder marked by considerable plasticity, for which there was the hope of recovery given appropriate intervention. The effect these articles have had on thousands of parents who hoped to achieve a similar recovery for their children are less frequently acknowledged but no less important. Many parents have spent large amounts of their own money purchasing the services that they see as essential to their child’s success. Intensive in-home Applied Behavior Analysis (ABA) services were further validated when, in July 2007, the Report and Plan on ep-magazine.com | EP Magazine • September 2020 29

Services to Military Dependent Children with Autism in the Department of Defense were published and Tricare began covering in-home ABA services. Other insurance companies would follow suit to where we are today, with all but two states requiring private health insurance to cover medically necessary autism services in the home.

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nter the pandemic. When Coronavirus (Covid-19) struck, it created a rupture in the day-to-day lives and educations of children and families everywhere. For kids with autism, the effect of this rupture was catastrophic. Suddenly, children who were receiving upwards of 40 hours per week of ABA therapy outside of school were getting nothing. A few ABA agencies were able to provide some remote services. Other families were left to choose between their child’s health and safety and continuing in-home services. I know of two families where they had to abruptly end services due to the Behavior Tech testing positive for Covid-19. In one case, a BCBA was hospitalized with the virus after visiting three homes that week. With schools being suddenly closed, parents had to worry about childcare, behavior challenges, and the disappearance of the team of clinicians, therapists, and technicians that they had become accustomed to. How were parents and caregivers going to survive without childcare? Respite? PCA services? And, most important, how were we going to provide education?

Sarah dug deep and Tristan didn’t regress, he progressed considerably over the months of quarantine. One resource Sarah credits is the Assistive and Augmentative Communication (AAC) Summer Camp Tristan attended. With high-quality instructors and dynamic curriculum and programing, Tristan participated in two half-hour long sessions per day. Typically, one was synchronous (live) and one asynchronous or pre-recorded. The sessions were effective in that they taught Sarah what she needed to know to program and personalize the AAC device for Tristan. Tristan and other children on the autism spectrum thrived with the structure and support the camp provided. While the actual in-person contact was limited, the parents were directly taught and supported in learning how their child learns. Meanwhile, another group of children on the spectrum were engaging in the Fields Center’s Social Connection Virtual Group. Initially, the group was created for 1st and 2nd Grade children who were verbal communicators. Eventually, the group was so successful that the model was replicated for teens and then adults on the spectrum. The Social Connections group met twice a week for half-an-hour. The groups followed a similar routine every session: there is a greeting, topic, questions, and then departure. The topics ranged from simple social concepts (eye contact, body language, listening, sharing, etc.) to more complex subject matter (having autism, what are hurt feelings, the difference between thoughts and feelings.) The response was overwhelmingly positive.

Enter the pandemic. A few ABA agencies were able to provide some remote services. Other families were left to choose between their child’s health and safety and continuing in-home services.

REFRAMING A CATASTROPHE : COVID-19-SPECIFIC AUTISM RESOURCES 7

AUTISM SOCIETY Webinars, Covid resource tool-kit, access to “autism source” database, social stories on Covid related topics

SPECTRUM NEWS SPECIAL REPORT Facts and statistics, resources for families www.spectrumnews.org/features/special-reports/autism-and-the-coronavirus-pandemic

www.autism-society.org

NATIONAL AUTISM ASSOCIATION Links to resources, webinars, facts about Covid-19 https://nationalautismassociation.org/covid-19-resources-for-families

AUTISM SPEAKS Covid information for families, adults on the spectrum, educators and health professionals, event calendar, non-English resources www.autismspeaks.org/covid-19-information-and-resources

AUTISM RESEARCH INSTITUTE Links to resources, personal story webinars, social stories and priming videos

AUTISTIC SELF ADVOCACY NETWORK Links to teaching tools, social stories, tips for caregivers

www.autism.org/covid-19-resources

https://autisticadvocacy.org/covid19

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When asked why she thought the group was so helpful for her daughter Ivy, one mother replied; “I didn’t know how to talk to my child about some of these topics, but listening to you explain things so concretely while using visuals I finally understood how she thinks. I was able to bring the lessons home and that’s where I saw the best progress.” Before the COVID-19 pandemic, virtual groups were rarely used with young and elementary-aged children. Our minds opened by necessity, which created an opening for new ideas, new implications, and new techniques for working with children on the spectrum. The parents of the participants in the Social Connections group commented often at how helpful it was for their child’s learning and growth over the months of quarantine, they talked about the learning and growth that never happened with the typical, somewhat rigid social skills curriculum that is most often taught to children on the spectrum. The final example of new ‘catastrophic thinking’ consisted of behavioral support for a 13-year-old boy with severe autism, explosive behavior, and minimal verbal skills. Edward was a large young man who tended to intimidate his parents and caregivers by yelling in their faces and sometimes grabbing at them. He also has self-injurious behaviors such as biting his thumb to the point of permanently damaging the skin. Edward had an AAC device but his behaviors were so severe and distracting that it kept him from fully understanding the fundamentals and using the device functionally. Edward’s mother felt strongly that he should learn to wear a mask. He had health issues and needed to see doctors and specialists in the community. She knew that if Edward was ever going back to school, he would need a mask to stay healthy and safe. After a brief assessment, clinicians from the Fields Center’s Family Navigation Program were able to identify three things that were strong reinforcers for Edward. He loved: skittles, videos on his iPad, and his noise-canceling headphones. The BCBA decided to design and create a mask that could be attached to the noise-canceling headphones and therefore pair the negative (mask) with the positive (headphones.) Initially, it was difficult for Edward’s mother to keep him from ripping the mask off, eventually, he was able to leave the headphones/mask on for a few seconds and then gradually increasing the time. By thinking ‘outside the box’ about wearing a mask paired with a preferred object, the BCBA was able to successfully design an intervention that the mother could implement with no in-person support. The BCBA had weekly zoom sessions with Edward’s mother to continue to support the efforts. This too was integral for the success of the program.

The parents in the Social Connections group commented on how helpful it was for their child’s learning and growth over the months of quarantine.

CLOSE TO HOME : RESOURCES CITED IN THIS ARTICLE

FIELDS CENTER FOR POSITIVE BEHAVIOR SUPPORT Jennifer Bogin’s online resource for service providers and parents/caregivers of children with autism. Also find out more about the Family Navigation Program and the Social Connections Virtual Groups www.fieldscenter.org

EMBRACING THE SPECTRUM Sarah Weirich’s self-proclaimed: Autism Mom, Autism Advocate, Sensory Architect and Savvy Spender Website. https://embracingthespectrum.org

COMMUNICARE, LLC Tristan’s AAC provider and summer camp program www.aaccommunicare.com

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he above vignettes illustrate how we can reframe catastrophe in light of the Covid-19 Pandemic. Taking the literal Greek meaning, the catastrophe, or uncovering, allows us to shed preconceived notions and break free from patterns of the past. From Tristan’s AAC Camp, Ivy’s Social Connections group, and Edward’s behavior plan, all three of these children found enormous benefits in the virtual or remote services that they received. Without COVID-19, these methods would undoubtedly remain ‘covered’ by our ingrained thoughts about the way we are supposed to teach and learn. Through catastrophe, there is great freedom and through freedom, discovery. Without this critical discovery, we remain stuck in our patterns, and this leaves us (and our children) without success. So when we can, let’s embrace the chaos, the messiness, and the catastrophe because without it we may never uncover our children’s full potential.• ABOUT THE AUTHOR: Jennifer Bogin is the Founder/Executive Director of the Fields Center for Positive Behavior Support. Fields Center provides training and resources to those who support individuals on the autism spectrum. With a passion for interdisciplinary services and Evidence-Based Practices, Jennifer has worked in various capacities with individuals with ASD from infancy to geriatrics. Most important, Jennifer is the aunt and sister to her nephew, brother and sister-in-law on the autism spectrum. Find out more at: www.fieldscenter.org

References Tippet, Krista. 2020, April 28. Living the Questions: How can we balance connection with disconnection? (Audio podcast) Sally J. Rogers, Laurie A. Vismara, J Clin Child Adolescent Psychol. Author manuscript; available in PMC 2010 Sep 22.Published in final edited form as: J Clin Child Adolescent Psychol. 2008 Jan; 37(1): 8– 38. doi: 10.1080/15374410701817808 Ellen G. Casale, J. Alacia Stainbrook, John E. Staubitz, Amy S. Weitlauf, A. Pablo Juárez, Chapter Six – The Promise of Telepractice to Address Functional and Behavioral Needs of Persons With Autism Spectrum Disorder, Editor(s): Robert M. Hodapp, Deborah J. Fidler, International Review of Research in Developmental Disabilities, Academic Press, Volume 53, 2017, Sharon Hinton, Jeanie Sheffield, Matthew R. Sanders, Kate Sofronoff, A randomdxized controlled trial of a telehealth parenting intervention: A mixed-disability trial, Research in Developmental Disabilities, Volume 65, 2017, Pages 74-85, Jac den Houting. Autism in Adulthood.Jun 2020.103-105.http://doi.org/10.1089/aut.2020.29012.jdh

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Unleash the Power of Broccoli

®

Avmacol® Extra Strength combines broccoli extracts (to help your body produce sulforaphane) and maitake mushroom extract (to support healthy immune function)*. The Avmacol brand has been selected for use in more sulforaphane human clinical trials than any other supplement1 available, so you can trust that it’s safe support for your whole family.

Visit Avmacol.com to learn more.                         1

Based on a 08/25/20 search of officially registered human clinical trials of known broccoli product competitors found on ClinicalTrials.gov.

ADVERTORIAL

Supporting Your Immune System and Natural Detoxification with Sulforaphane By Brian Cornblatt, Ph.D., Medical Director of Avmacol and Nutramax Laboratories

Individuals today are faced with an array of threats in the air we breathe, the food we eat, and the water we drink. Often unknowingly, we are ingesting and breathing in a variety of potentially harmful microbes and environmental toxins that can have both immediate and lasting negative impacts on our health. Luckily, our bodies are equipped with natural defense mechanisms to combat these threats. The immune and natural detoxification systems work together to help fight off harmful effects, but there are many actions we can take to ensure these systems are working at full capacity. Diet and exercise are two such actions in the promotion of general health and well-being most people are familiar with and should not be underestimated. There are extensive recommendations, however, which make it difficult for individuals to determine where they can truly make a difference in supporting their immune and natural detoxification systems. Additionally, repetitive moderate to extreme exercise, often suggested as beneficial for health and wellness, can negatively impact our immune system and drive chronic inflammation if not done correctly. Here, moderation is essential with a mix of high intensity followed by low intensity workouts. One safe way to help support both our immune and natural detoxification systems is through the phytochemical sulforaphane.

Why Sulforaphane? Sulforaphane is produced through the conversion of glucoraphanin (sulforaphane glucosinolate), which is facilitated by the active myrosinase enzyme. The essential ingredients needed to promote sulforaphane production (glucoraphanin and myrosinase enzyme) are found in cruciferous vegetables such as broccoli, Brussel sprouts, and cauliflower. Sulforaphane helps increase the production of critical Phase 2 detoxifying enzymes, promoting your body’s natural detoxification process, supporting the elimination of potentially harmful environmental toxicants.

Why Avmacol® Extra Strength? Unfortunately, it is difficult to get meaningful amounts of glucoraphanin and myrosinase from eating vegetables alone due to widely varying cultivation and fertilizing techniques. The cooking process can destroy the myrosinase enzyme, further diminishing the possibility of any meaningful conversion of glucoraphanin to sulforaphane. For these reasons, supplementation is an ideal way to support sulforaphane production in the body. Avmacol® Extra Strength provides consistent amounts of glucoraphanin (sulforaphane glucosinolate) and active myrosinase enzyme to help promote sulforaphane production. The addition of maitake mushroom extract (Grifola frondosa) provides beta-glucans which work in combination with sulforaphane to support your body’s natural detoxification process better than sulforaphane alone. In a laboratory study, the treatment of RAW 264.7 cells with the combination of maitake mushroom extract and sulforaphane resulted in higher induction of the expression of the Phase 2 detoxification enzyme quinone oxidoreductase than either individual component alone. The maitake mushroom extract found in Avmacol® Extra Strength also provides the bonus of immune support by promoting neutrophil function and natural killer cell activity. The Avmacol® brand has been selected for use in more sulforaphane human clinical trials than any other supplement*. When faced with today’s environmental threats, in particular, a supplement backed by clinical research that promotes sulforaphane production is one essential way individuals can help boost immune function and promote the body’s natural detoxification system in support of overall health. *Based on a 08/25/20 search of officially registered human clinical trials of known broccoli product competitors found on ClinicalTrials.gov. In control cells (left panel), NQO1 protein expression is indicated by the green straining. When cells are exposed to sulforaphane and Maitake (right panel), the level of NQO1 staining, representing the amount of protein, is increased.

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EP’s ANNUAL EDUCATION ISSUE

HOW A

MULTI-TIER SYSTEM OF SUPPORTS

CAN HELP FACILITATE STUDENT RECOVERY AFTER COVID-19 BY DEBBIE ESPOSITO AND LAUREN AGORATUS, M.A.

Many families remain concerned if their schools will be open in fall, if remote learning will continue, or if districts will use a combination of virtual and in-person learning. While some students may have thrived using one-to-one remote learning, others have suffered scholastically. 34 September 2020 • EP Magazine | ep-magazine.com

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any students have experienced trauma related to COVID-19, whether it’s the loss of being with friends, or even loss of a family member. Students with disabilities were most at risk regarding COVID health-wise and struggled with learning as well. MTSS (multi-tier system of supports) can be used to address the needs of students with special needs socially, emotionally, and academically as schools reopen.

WHAT IS MTSS?

that will allow districts/schools to meet the needs of those students MTSS is a framework used by schools to improve outcomes for in a timely and effective manner. The MTSS framework was creatall learners by identifying needs early and modifying instruction ed to meet such needs. By using MTSS, districts will ease the tranbased on identified needs. Some schools use the RTI (Response to sition back to school and ensure equity for all students.• Intervention) ABOUT THE model. It is a sysAUTHORS: tem of tiers in Debbie Esposito is the which Tier 1 is Co-Director of the supports for all START EPSD Project, students, Tier 2 Parent Group Specialist, and Literacy, uses targeted Inclusion, and NJTSS small group Project Coordinator at instruction, and SPAN. She currently Tier 3 provides to serves on the State most intensive Special Education Advisory Council as supports needed BUILDING PYRAMIDS: (Left) MTSS is a framework that helps educators provide academic and appointed by the NJ behavioral strategies for students with various needs. (Right) Critical practices to support by students. Many Board of Education. students’ social, emotional, behavioral, and academic growth. districts also use Lauren Agoratus, M.A. tiered PBIS is the parent of a (Positive Behavioral Intervention and Supports) to address behav- young adult with multiple disabilities. She serves as the State Coordinator for Family Voices-NJ and as the central/southern coordinator in her state’s Familyioral needs.

HOW DOES IT WORK? For MTSS to be effective, it must include: ➢ Positive School Climate ➢ District/School Leadership ➢ Family and Community Engagement Schools use universal screening and progress monitoring to identify individual student needs. This is essential for data-based decision-making to implement strategies and programs to address gaps in student performance. MTSS allows schools to address not only academics, but also social/emotional needs by using behavioral screeners such as the Universal Behavior Screeners, e.g.1 “Supporting and Responding to Behavior: Evidence-Based Classroom Strategies for Teachers,”2 to identify students who may be in need of wrap-around services.

to-Family Health Information Center. FVNJ and F2FHIC are both housed at the SPAN Parent Advocacy Network (SPAN) at www.spanadvocacy.org

TIERING IT UP : RESORCES FOR MTSS

UNDERSTOOD.ORG MTSS Factsheet www.understood.org/~/media/31060982a1144b48b2654ec8ec49d39e.pdf

What is RTI? www.understood.org/en/school-learning/special-services/rti/understanding-response-tointervention

BENEFITS OF MTSS Benefits of utilizing an MTSS framework include: ➢ Improving academic outcomes ➢ Reducing referrals for discipline ➢ Reducing special education referrals ➢ Reduces inappropriate identification of students of color for placement in special education ➢ Increases placement in the Least Restrictive Environment (See MTSS Factsheet and SPAN webinar in Resources) Students returning to the classroom, whether virtual or in-person, will be very different from when they left. Many families will have experienced job loss leading to food insecurity, illness and even death. Academically, the sudden school closings left districts often at a loss to address the needs of socially, economically diverse and differently-abled student populations with varying levels of success. The return to school will necessitate an early assessment of not only students’ academic, but also social emotional, status in a way 1. www.pbis.org/resource/systematic-screening-tools-universal-behavior-screeners 2. www.pbis.org/resource/supporting-and-responding-to-behavior-evidence-based-classroom-strategies-for-teachers

CENTER FOR PARENT INFORMATION AND RESOURCES RTI/MTSS resources www.parentcenterhub.org/resourcelibrary/index/i/i3/i34/

PBIS www.pbis.org

“Returning to School During and After Crisis” www.pbis.org/resource/returning-to-school-during-and-after-crisis

SPAN PARENT ADVOCACY NETWORK WEBINAR NJTSS: A Framework for Successful School Reopening, Recovery and Beyond, Part 1 “Supporting All Students as School Reopen” www.youtube.com/watch?v=--lEc3PHtDg

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EP’s ANNUAL EDUCATION ISSUE Students with special needs and their parents are accustomed to considering the potential challenges of every school year well in advance. Still, the months leading up to this school year have been particularly challenging as decisions regarding college choice, whether to take a gap year, where to live and “how” to learn have been looming. How to navigate this terrain?

COLLEGE IN THE MIDST OF COVID-19 BY KARA JOLLIFF GOULD, PH.D.

“I want to go home!” Stephanie couldn’t believe her ears. Her daughter Emily had spent the past few months hoping and praying that she would be able to return to her small-college campus for her senior year this fall, despite the COVID-19 pandemic. A bright student, Emily has battled anxiety as well as serious health issues since high school. Her junior year, cut short in March of 2020 due to COVID-19, had been her best ever health-wise as well as socially.

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ow, her first day back on campus, Emily was grappling with the changes that the pandemic has required of colleges, as well as the reality that she and her friends could become ill suddenly or be required to isolate for two weeks if a close contact were diagnosed with the novel coronavirus. How many friends would she be allowed to see at a time? Have they quarantined before arriving as required? How can she help to protect her roommate who has serious underlying health problems? What should she say to students she meets who aren’t following guidelines and seem unconcerned about protecting themselves and others? Faced with this new reality, she began seriously questioning her choice to return to campus. Emily is not alone. Millions of U.S. college students and faculty members have the same concerns and are asking the same questions. Yet, while many colleges and universities have canceled life on campus for this fall, others are inviting student back to campus for a more controlled, socially distanced fall semester. COVID-19 has had a major impact on higher education. When colleges and universities abruptly closed their campuses in the spring of 2020 and moved to remote online learning via the internet, many suffered near-catastrophic financial losses. Seniors had to say their goodbyes weeks or months early, as most returned home to finish courses on their own. Scores of universities, including the entire California State University system, have chosen to teach exclusively online this fall. But many small colleges across the country, as well as large universities in states including Arkansas, Georgia, Iowa and Kentucky are planning to host students on campus with a mix of in-person classes, remote or online courses, or a combination known as hybrid learning. 36 September 2020 • EP Magazine | ep-magazine.com

Unfortunately, none of these options seem to promise anything like a normal semester and results thus far are mixed. The University of Notre Dame reported high COVID-19 positivity rates among students in mid-August, after beginning the semester early in order to end by Thanksgiving. The University of North CarolinaChapel Hill began in-person classes August 10, and by August 17 announced a pivot to online-only instruction due to clusters of COVID-19 infections in residence halls and a positivity rated among students test of 13%. Will other universities teaching inperson experience the same fate? Only time will tell. Students with special needs and their parents are accustomed to considering the potential challenges of every school year well in advance. Still, the months leading up to this school year have been particularly challenging as decisions regarding college choice, whether to take a gap year, where to live and “how” to learn have been looming. How to navigate this terrain? Parents and students should keep in mind that their individual situations may result in different choices for different students, and that’s perfectly acceptable.

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or some students with disabilities, online classes eliminate some barriers to learning and provide more opportunities to succeed. Parent Jen Driscoll writes, “We have been pretty satisfied with how things have played out. Our son just completed a successful summer semester class online… He was adamant that fall be entirely online and was willing to change his course schedule if necessary… but all of his classes will be online. He’s ready to thrive online, even if he’s sad to give up some independence for a semester by living at home again.”

LIMITED ACCESS: Scores of universities, including the entire California State University system, have chosen to teach exclusively online this fall. While many colleges and universities have canceled life on-campus for this fall, others are inviting students back to campus for a more controlled, socially distanced fall semester. Pressure over whether or not to study on campus has increased stress for many other families, however. “We have been riding a wave of uncertainty and disappointment as my new first year student heads toward college,” parent Laura Kazan notes. College professors are feeling that same uncertainty and disappointment. We want to meet our students in a classroom and teach them in person. We also want students and their families to stay safe. In many areas across the U.S. and world, it is not possible to hold in-person classes safely under current conditions. A parent whose chronically ill son has chosen to move onto campus for his freshman year explains how hard the decision to allow him to do that was for her. “This has been the most difficult decision of my life. He moves into his dorm of nearly 500 students in only two days and I’m still not sure I want him to go… There is zero sense of comfort. All I have is hope and God willing, some luck.” Parents moving students into campus housing this fall will have a different experience from years past. “My soon-to-becollege freshman daughter is not allowed any parent to help her move in – she has to

bring all her stuff up and unpack/arrange it by herself,” parent Irene Berkowitz writes. Her concern is that her daughter with ADD and executive functioning issues won’t be able to get unpacked effectively in time for classes to begin. “I’m so concerned she’s going to be sleeping on an unmade bed and living out of suitcases.” Olivia Schneider’s daughter, a senior in high school, is undecided about the kind of college experience she should pursue. “It’s hard to know whether or not the pandemic will affect the college experience for freshmen in 2021, but Schneider hopes that her daughter won’t miss out on all that an inperson collegiate experience can offer. My daughter seems to be going back and forth between pursuing an online degree and going to a traditional school. But she needs social [interaction] and can’t imagine being stuck at home all through college. I wonder how all of this will impact this generation – only time will tell.”

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mily decided to stay on campus for her senior year. She realizes that while she can’t control whether and how other students follow socially distancing guidelines, she

can simply focus on what she needs to keep herself and her close contacts safe. Her college announced that if a move to online teaching only is necessary, the plan is for students to stay on campus until Thanksgiving, living together and learning online. Although there is no guarantee, this decision provides students such as Emily with some stability, and hope – hope that she and her classmates will be able to finish fall semester, and eventually their senior year, together. • [Author’s Note: For the purpose of privacy, Stephanie and Emily are pseudonyms.] ABOUT THE AUTHOR: Kara Jolliff Gould, Ph.D., is Assistant Professor of Journalism at the School of Journalism and Strategic Media at the University of Arkansas. Previously, she taught for more than 20 years at colleges such as Weber State, John Brown University and Pepperdine. She has worked professionally in media in Chicago and Salt Lake City and has published scholarly work in The Journal of Media Education, The Southern Communication Journal, and The Journal of Broadcasting and Electronic Media. She is acquainted with the needs of students with disabilities both as a professor and as a parent.

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EP’s ANNUAL EDUCATION ISSUE

ACCESSIBLE LANGUAGE LEARNING BY JEM MABALOT

38 September 2020 • EP Magazine | ep-magazine.com

Because I am legally blind, I had to find ways to be as productive with my language learning as my non-disabled and passionate counterparts. So, for those interested in taking on a new language, here are some tips that might help. My early childhood was spent in the Philippines. Growing up, I often thought nobody understood me. People weren’t educated about disability, and they often equated visual impairment with incapable or stupid. I was treated much better when I moved to the United States. However, I was still trapped in my disability barrier. The list of things I couldn’t do that my peers enjoyed grew as I matured. I was desperate to find my niche wherein I could evolve to be the person I really am.

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n middle school, joining groups like robotics or the debate club didn’t seem like the thing to impress people. Being caught trading Pokemon cards was a one-way ticket to getting an appointment with bullies. Playing musical instruments or sports were for the talented. I didn’t have a celebrity personality to star in the daily school hallway drama specials called “He Started It” or “You Did What with My Boyfriend?” Instead, I found a love for something not many kids my age thought interesting: languages and culture. My early contact with Japanese media had a momentous impact on my life. Anime gave me the courage to stand up against bullies, the motivation to be a proactive, top-performing student all the way through college, and I opened my mind to a new dimension of the world through languages. Unfortunately, no matter how much I wanted to speak Japanese at the age of 13, the materials for learning the language on my own at the time were not accessible for people who are visually impaired. So, I channeled my curiosity for languages to French. It was a Romance language, so reading and writing wasn’t difficult, except for the occasional accent marks I would misplace or overlook. My time with French was enjoyable but short. When I began high school, I wanted to continue my French as well as start Spanish, but credit restrictions pushed me to choose just one of the two. So, I took my chances with Spanish, and I genuinely fell in love with it. I was attracted to the way Spanish sounds and the fact that it was accessible enough for me to seriously self-study ahead of my class and entertain myself learning dirty words. My first Spanish teacher was a huge inspiration to me that I decided to pursue the language in university. However, after high school, my relationship with Spanish began to resemble Katy Perry’s “Hot ‘N’ Cold.” I had a professor who was passionate about Spanish, but her teaching skills were as low as her exposure to people needing special

accommodations. She conducted the class with authoritarian behavior and burdened us with an unusually heavy load of homework. A daily assignment that would take several hours for a sighted student took me days to complete, and I’m not exaggerating. By the time I could watch “Maria la del Barrio” without reading subtitles, I decided to divorce Spanish, drop my major and switch universities. While I was learning French and Spanish, I never gave up on my first love, Japanese. Sometimes, I would do the only thing I could to learn the language—immerse myself through its media like music, drama, and videos. Reading subtitles was a lot of work for me, but the torture was worth every new word I caught. It wasn’t until I switched universities that learning Japanese became achievable. My new university had a Japanese department. I noticed the internet began to have accessible self-study resources and random PDFs of reputable textbooks. The university also had a study abroad program to help improve my Japanese. It was time to take my relationship with Japanese to the next level. My connection to and ability in Japanese grew stronger every day. I’ve also picked up two more languages along the way. The little ones I taught through my online ESL job have tugged at my heartstrings and led me to learn Mandarin. It feels good to know that families are not talking about me before class while the cameras are off in the virtual classroom. Likewise, as a longtime fan of Korean drama, I felt like it was a crime to put off learning the language for 10 years, especially when much of its grammar and vocabulary resembles Japanese.

HURDLING OBSTACLES FOR LANGUAGE LEARNING I’m not here to write about how easy learning a language is just by following steps XYZ. It is a tricky and very time-consuming process, regardless of how gifted you are in acquiring languages. However, I will assure you that you will enjoy the fruits of your labor, especially after getting to the intermediate level. Because I am legally blind, I had to find ways to be as productive with my language learning as my non-disabled and passionate counterparts. So, for those interested in taking on a new language, here are some tips that might help. Putting in a lot of time and effort towards learning vocabulary and grammar concepts is necessary to reach a high level of proficiency in a foreign language. When I started studying Japanese vocabulary, I used to hand-write the words on flashcards as I did with French and Spanish. However, I quickly realized that this method did not work for me when learning languages with pictogram writing. Japanese has three unique writing systems: Katakana for words from other countries adapted into the language, Hiragana for either phonetically spelling out words or combining ep-magazine.com | EP Magazine • September 2020 39

them with the third system, Kanji. These are characters derived from Chinese to use as the stem of the word. Kanji characters have multiple strokes, many of which are too tiny for me to see or notice on paper. Spaced repetition software (SRS) saved me from the torture of squinting to examine strokes. An SRS is like an electronic flashcard application, but smarter. It uses an algorithm based on your responses to classify which cards need more practice. It deter-

vocab” or “school stuff.” This way, I don’t have to spend time sorting out the cards I don’t need at the moment, and easily reference ones I need at that time. I always have my cards organized with the English words faced down. This is so that I could spend as long as necessary remembering meanings for all the foreign words face up. This way, I can resist the temptation to flip a card. Later, I look at how much of the words in a page I remember by going through the same cards and checking my answers with

When I started studying Japanese vocabulary, I used to hand-write words on flashcards as I did with French & Spanish. Having a tablet like the iPad Pro is very useful and accessible, especially for reading & writing practice. mines the best time for you to review these cards again to set in your long-term memory. The best part is, most of the similar software applications are available across all devices. You can use an SRS for any language, but some are dedicated to a specific language. The SRS I personally like to use is Anki because it is the most flexible application. I use it for all the languages I am learning. With Anki, I can either make my own deck of cards or download free decks on the website. Furthermore, I am free to modify my cards in any way I want by changing the font color and size, the background color, how my cards are formatted, adding audio files or pictures, and more. I have Anki on my laptop, my phone, and my iPad to memorize vocabulary, phrases, and grammar anytime and anywhere.

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efore I discovered SRS applications, I had no choice but to use index cards. Initially, organizing them drove me crazy. Fortunately, I found a way to manage all my cards. I used to buy clear page protectors for trading, or recipe cards to keep them in place and combine the pages into one folder or binder. To make memorization easier, I would group words into sets such as “food 40 September 2020 • EP Magazine | ep-magazine.com

the English on the back. Many visually-impaired people have trouble writing on lined paper, but I didn’t have this problem until I started learning Asian languages. I need to write characters bigger than the space the lines provide. Because of the multiple strokes of the characters, the lines just made my writing harder to read. If I write the characters small enough to fit the space, I wouldn’t be able to read them at all. That’s why I ditched the lined paper and started using unlined notebooks or sketchbooks. With these, I am the master of the space. I could write things as big as I please and organize my notes in a way my brain can process things better. I even use the notebooks in a landscape orientation because it’s easier to manage and see what I’m doing up close. I also don’t use normal pens and pencils. I prefer fine-tip brush pens with different colors because it makes my writing clearer and easier to see, even the smaller strokes. The set by Prismacolor is my favorite, not only because the ink comes out nice, but also because it makes me feel like an artist.

Recently, I said good-bye to the days of flashcards and unreadable paper materials. Today, I have multiple devices to rely on for my language learning. Having a tablet is a game-changer. My iPad Pro is literally a computer I can hold up to or place close to my face. With a good notetaking application such as Microsoft OneNote or GoodNotes, it can also be the perfect notebook that I can write my notes on legibly with my Apple pencil, and zoom in to read what I have written in different languages. Because I have the 12.9 inch iPad, I have enough real estate to simultaneously open multiple applications and see them easily. When I study Korean, I make use of the iPad’s split view function. I have my GoodNotes app ready on the left side of my screen to write down new things I learn from the Webtoon comic or eBook I am reading on the right half of the screen. If I want to look up a definition or grammar explanation, it only takes a simple gesture to look up what I want in another window, then go back to my reading. Once I reach my learning goal for the day, I free up the right half of my screen to open Anki to study my newly acquired vocabulary and grammar. When I want to read something that does not have an electronic copy available, I can easily scan the material with my iPad and convert it into a PDF file I can either read or import to my notebook app. Having a widescreen tablet like the iPad Pro or Surface Pro is very useful and accessible, especially for reading and writing practice. There were times in my formal language classes that I felt like I would learn better if I had the teacher’s attention focused on me alone. Unfortunately, I couldn’t see what they were pointing to in class. More hateful are times when a professor constantly refers to the board and, all of a sudden, calls me out for an answer. Luckily, I don’t have to put up with language teachers who refuse to understand people’s special needs. With online learning on the rise, there are now ways to find tutors for a reasonable price. I use italki, a website platform that hosts thousands of professional and community language teachers. You can find the right teacher based on your needs and budget and switch teachers at any time. I meet with professional teachers at least

once a week to sharpen my skills, and I’m not even paying more than 15 dollars per lesson. I’ve informed teachers about my visual impairment, and they have all been very accommodating. There are countless ways to make studying more accessible to visually-impaired individuals who wish to learn a language. However, the majority of techniques and resources that work for one person may not work for another. You also have to take into account what language you want to learn and your circumstances. Regardless, I hope that these general tips would be useful to people who want to make a big leap into language learning.

REAPING THE BENEFITS Usually, most people just know either the simple words or explicit sayings of another language. I draw inspiration from J.M. Coetzee who said, “It is a world of words that creates a world of things.” There is a massive difference between just knowing how to say the word “apple” and knowing how to say what you want to do with that apple. A language is a powerful tool. It can not only impact your life but others' as well. I can’t drive from Charleston to New York. Still, I was able to inform and influence people's lives across the ocean and build strong connections with them all because of my ability to converse in other languages. Speaking another language also protects my privacy. A few years ago, I switched my phone to Japanese. My brother, who usually hacks into my phone for funny pranks, found it impossible to randomly change my phone settings. It was entertaining to watch a

mad tech struggling to navigate a simple iPhone. On another occasion, my father, who usually reads everything he touches, looked at my Japanese notes with such concentration for a while as if he understood them. After a good while, he said in frustration, “Ah, I don’t understand anything.” Finally, I will always treasure my heart-warming experiences as a result of knowing other languages. Several times, I cheered up my Japanese best friends in their language. Encouraging children who were upset in my internship validated my speaking skills. You couldn’t believe how wide my smirk was when I realized how hard my Chinese student was trying to please me. He asked his mother in Mandarin what he should do during class to prove he is practicing his English. These moments are why I continue to study and take on languages.• ABOUT THE AUTHOR: Jem Mabalot, born with aniridia and legally blind, is a fresh graduate of the College of Charleston with a B.A. in International Studies. Her passion is teaching the youth and learning languages such as Japanese, Korean, and Chinese. She loves exploring different cultures and wants to be a media influencer to inspire and lead the youth from different backgrounds and abilities to pursue their dream. Her calling is to establish a nonprofit organization for talent development and empowerment for children in Asia. Currently, she is teaching ESL online and working on her Certificate in Teaching English to Speakers of Other Languages (CELTA). She is planning to launch her YouTube channel soon.

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EP’s ANNUAL EDUCATION ISSUE

ONE WAY SCHOOLS ARE BECOMING MORE INCLUSIVE BY RENEE DEASE

Parents dream of a school environment that encourages children’s education while helping them develop into their best selves as humans. I am strongly encouraged through my work, and students like Liam Price and Elizabeth Price (no relation), that some schools are indeed addressing – and succeeding – in creating more inclusive environments through Special Olympics Unified Champion Schools®. 42 September 2020 • EP Magazine | vv

PHOTO PROVIDED BY RENEE DEASE/SPECIAL OLYMPICS

through bringing people together, creating inclusion, raising awareness, and increasing respect. Liam and Elizabeth even took to Capitol Hill this year to help spread the word among government leaders, using their own stories as examples. “Unified Champion Schools are creating inclusive school environments, inclusive sports teams and leadership opportunities, which has played a significant role in motivating me to create a new outlook for my future and helped me to focus more on what is possible in my life,” shares Liam, who has an intellectual disability and has participated with S p e c i a l Olympics Indiana for 12 years. Liam and Elizabeth both live in Indiana. They attended different schools, but their lifelong friendship was forged through the UCS program and their selection to serve as Special Olympics U.S. Youth Ambassadors. “I’m so happy that I ended up enjoying working with Liam as a U.S. Youth Ambassador, making friends and seeing the true impact that I have as a Unified partner. Being an ambassador has been a really great learning experience for both of us. We've gone to meet other youth leaders from all across the country and really think of new ways to bring inclusion back to Indiana and just to be better leaders ourselves.”

and field, and a lot of my friends got involved with me. Since then, I’ve gotten more involved with Unified activities (sports and games) and grown from them. In participation in Unified Champion Schools, I have become a US Youth Ambassador with Elizabeth Price. We are best friends. She encourages me that I can do anything I can if I try hard enough. She is interested in my success.” With the c u r r e n t national COVID-19 crisis, Liam and Elizabeth stay connected virtually, continuing to meet weekly. “We have weekly calls with each other. Liam calls me once a week and we also text. Even when he's on vacation, his parents send me pictures of him,” shares Elizabeth. “Last week, when he was in Florida, his dad sent me some pictures of Liam fishing. We make a point to stay in touch with each other, catch up and just check in on each other.” In the 2018-2019 school year, over 7,600 schools in the U.S. participated as Unified Champion Schools, which has created over 7 million inclusive experiences for students just like Liam and Elizabeth. Liam and Elizabeth encourage everyone to practice inclusion and promote Unified Champion School activities. Find out how you can get involved by contacting your local Special Olympics Program at https://www.generationunified.org/contact/. “I have a disability, but I have learned to not let my disability define my limitations or who I am,” shares Liam. “Elizabeth and I hope that others will follow our steps and join in on Unified Champion activities and sports!”•

97% OF STUDENTS REPORTED THAT UNIFIED CHAMPION SCHOOLS HAD IMPACTED THEIR SCHOOL AS A WHOLE THROUGH BRINGING PEOPLE TOGETHER, CREATING INCLUSION, RAISING AWARENESS, AND INCREASING RESPECT.

PRICES ARE RIGHT: Elizabeth Price and Liam Price; “Starting with Unified sports and becoming a Unified Champion is great!” said Liam. Elizabeth adds “The movement to make this world a more inclusive place starts with you!”

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nified Champion Schools (UCS) is a program for schools Pre-K through university that intentionally promotes meaningful social inclusion by bringing together students with and without intellectual disabilities to create accepting school environments, utilizing three interconnected components: Special Olympics Unified Sports®, inclusive youth leadership, and whole school engagement. Liam and Elizabeth travel the country as Special Olympics U.S. Youth Ambassadors to bring awareness to the Unified Champion Schools (UCS) program and bring inclusion back to their home state of Indiana. Here’s why: 97% of students reported that Unified Champion Schools had impacted their school as a whole

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lizabeth more recently joined Special Olympics when she joined a Unified gym class. She is thankful for how this choice has made such a difference in her life. She currently serves as president of her school’s Unified Champions Schools committee. “During my freshman year of high school, I finally got to experience competing for my school by doing Unified track

ABOUT THE AUTHOR: Renee Dease is the Healthy Athlete Coordinator, Healthy Athlete-Special Olympics Initiatives

ep-magazine.com | EP Magazine • September 2020 43

EP’s ANNUAL EDUCATION ISSUE

IN THE CONFUSION OVER REOPENING SCHOOLS,

WHERE DO OUR KIDS WITH SPECIAL NEEDS END UP? BY LAURA WHITAKER

We have all experienced them. The highs and lows of COVID-19. It began in March with the growing fears of a widespread, unknown, and uncontrollable virus. Schools moved from inperson to online in an effort to be vigilant to keep our families safe and healthy. It’s no secret that the subsequent months have been a master class in charting unknown waters. ecause this pandemic is the first of its kind on a global scale, there is no playbook. There are no easy answers. After six months, the path forward is still unclear as we contemplate sending our children back to school. School boards, gov-

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44 September 2020 • EP Magazine | ep-magazine.com

ernments, teachers and parents are doing their best to weigh the health risks of physically returning to classrooms with the mental, social and developmental risks of not returning to a typical social environment. As a nonprofit leader of an organization, serving hundreds of kids with special needs and their families called Extra Special People, we are walking alongside families regardless of the cost in 2020. Through our experiences and interactions with this community, we have received confirmation of several truths we have known for many years:

KIDS WITH SPECIAL NEEDS NEED IN-PERSON ENGAGEMENT: I recognize I am preaching to the choir: the majority of kids of all abilities crave and require human interaction, and most can truly thrive only with the support of touch. Caretakers have borne the efforts of in-person touch and care for many months, and although many do not see it as a burden, families are most successful when they can raise a child with special needs with a community of support and that includes teachers, therapists, and schools. :

PHOTOS PROVIDED BY LAURA WHITAKER

GOOD VIBRATIONS: We made the choice to re-open our day camps safely (but not 100% risk-free). We chose to do this because our community was suffering, and our mission is to help individuals with special needs thrive. When schools and businesses in Georgia closed and we were The feedback we received from families during this time was asked to shelter in place, our nonprofit organization that runs on clear – our kids are happiest when they are actively engaging in volunteer efforts and in-person activities was forced to close its person. We had to think creatively on how to follow all safety guidedoors in-person as well. My team and I decided that first, we must lines and social distancing rules, while being live and in-person. connect with all 600 of our families to find out what they needed. In The clear-masked smile and a voice face to face was invaluable to a matter of days, we sprang into action to provide meals to families the well-being of our community of kids with special needs. It is who had lost jobs and needed to be fed, groceries to families on possible with a dose of creativity. lockdown, virtual support groups with an effort to provide sanity in the comfort of collective challenges, emergency respite services to FAMILIES MUST BALANCE RISKS FOR THE MENTAL HEALTH OF THEIR caregivers whose children have severe behaviors, and daily inspira- CHILDREN: I am a mother of three typical children, so I understand tion on social media for all our participants and their families. Those and empathize with the parental responsibility of making wise first few days were crucial as routines were changed and families and safe decisions for our family. Those decisions are multiplied were living in fear. This gave us when you are a parent of a child “Winston Churchill once said that an opportunity to provide them who is immuno-compromised a dose of hope despite the unceror who has disabilities. But just ‘Fear is a reaction. Courage is a decision.’ tainty we were experiencing. as we weigh risks and rewards In order to step forward in courage, After immediate physical during normal times, it is just as we have to make the decision every day to needs were taken care of, we important to think about the consider the source and step forward for what long-term effects on mental focused on the emotional wellis best for our families and our staff.” being of our kids and families health when there is a lack of through Drive-Through Parades. social stimulation. Social regresOur team decked out in costumes, lined the parking lot of our sion, depression and mental illness are just a few of the dark and buildings with music blaring and cheered for each family, calling difficult-to-quantify repercussions of COVID-19. From my experieach individual’s name, as they slowly drove through. Each parade ence during lockdown, our community of families needed interwas a collection of air hugs, smiles, positive vibes and encourage- action, words, tactile experiences, and resources to be stimulated ment before we filled their car trunk with meals. and thrive. We offer those things at ESP, but they can also be ep-magazine.com | EP Magazine • September 2020 45

special needs are comfortable with and used to. And the same can be done in schools, in therapy offices and in after-school activities. Most important, the courage to move forward must start at the top.

WE HAVE TO DO OUR HOMEWORK AND FOLLOW THE SCIENCE: Several studies have shown that children are less likely to catch COVID-19 and less likely than adults to see any severe symptoms at all. And a recent study found that there are not more significant risks for children with disabilities. While this was an initial fear amongst children with special needs, we can find comfort not in the media, but in science and statistics along the way. Winston Churchill once said that, “Fear is a reaction. Courage is a decision.” In order to step forward in courage, we have to make the decision every day to consider the source and step forward for what is best for our families and our staff.

WE ALL MUST CONTINUE TO CHANGE OUR EXPECTATIONS WITH WHAT IS “NORMAL”:

WELCOME CHANGES: We had to think creatively on how to follow all safety guidelines and social distancing rules, while being live and in-person. The clear-masked smile and a voice face to face was invaluable to the well-being of our community of kids with special needs. It is possible with a dose of creativity. offered at school. As a community leader representing an often-forgotten population, I think it’s incumbent for me to speak out and request that other community leaders and school administrators take note of the toll this time has had on families of children with special needs. This summer, we stepped into action under this type of thought leadership. While many summer camps did not take place this year, we made the choice to reopen our day camps safely (but not 100% risk-free). We chose to do this because our community was suffering, and our mission is to help individuals with special needs thrive. Instead of being stifled and hampered by the restrictions of lockdown, we again channeled our creativity to innovate our traditional logistics and settings. Traditionally, we host six weeks of daytime summer camp with over 300 people at our 14,000 sq. ft. facility with indoor and outdoor games and activities. We knew this would not be possible so with the help of 46 September 2020 • EP Magazine | ep-magazine.com

businesses, churches, and partners around town, we identified six locations where we could simultaneously hold camp for smaller groups of participants. The safety precautions of our staff and volunteers were paramount in order to keep our camp participants safe. And even those measures evolved as we realized how difficult or impossible it was to hear and understand camp leaders when they are wearing facemasks. Thanks to the ingenious design of an online entrepreneur, we were able to provide facemasks with clear covering over the mouth that greatly improved communications. While nearly impossible to keep face masks on many individuals with disabilities, we led them by example, made it “cool,” and many ended up following the 2020 trend. The traditions and feel of camp remained the same and the magic of ESP was different, yet palpable. Familiarity and consistency are key when we are required to change several other aspects which our friends with

Over the years I have heard from several of our families the stories of when their child was born with different abilities or when they received a diagnosis. Story after story recounted that doctors said their child would never do this or that, what is typical of other children, “normal.” And yet, I have watched families of children with special needs become experts in not looking at the milestone map of typical children and re-write what normal means to their family. What is beautiful about it is that every milestone comes with unexpected surprises and joys. The phrase I have taken on for this COVID-19 season is in honor of them: high hopes and zero expectations. t is time for us to embrace re-writing what normal life means. If we can have high hopes and zero-expectations, mixed with a dose of creativity, I believe that new normal will continue to evolve as the months progress toward a vaccine, herd immunity or whatever allows us to return to a life of human interaction, contact and – dare I say it – hugs! •

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ABOUT THE AUTHOR Laura Whitaker is the Executive Director of ESP. Lean more at extraspecialpeople.com

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AUTISMS BY KIMBERLEE RUTAN MCCAFFERTY

I’ve been reading blogs about autistic kids for going on seventeen years now, and I have seen every opinion and topic covered during that time from potty training to aggression, to the “has autism” “is autistic” debate, to whether bloggers should be writing about their kids at all.

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have read impassioned commentary urging moms and dads to “presume competence” and not write about topics which would embarrass their kids. I have read commentary responding that their kids would never understand about the content of their parents’ missives, and that the readers need to vent to get through the day. I am a blogger who has written about her severely autistic son for a decade. My boy, whom I love dearly and who loves me, has been aggressive in the past. I have written about some instances, but mostly kept them to myself. I’ve preferred to write about his triumphs and pass on tips to other parents to help them navigate the autism world. The truth is I have chosen this path in part because it didn’t feel right to me to share that side of him, as it is not representative of who he is at his core, or how he predominantly acts 48 September 2020 • EP Magazine | ep-magazine.com

at home, in school, or in the community. I also chose not to share to protect him. Anyone could read my blog posts and have a negative attitude toward my son, and that is the last thing I’ve wanted or would ever want. He is a loving, kind boy, and deserves to be perceived that way. I have not chosen not to write about his episodes because he might come across them on his internet searches and be shamed by what I wrote. Justin is severely autistic, non-verbal, and has intellectual disability. This does not mean that he is not intelligent. When my son was three, one of his therapists pointed out to me that he was able to read, a claim I met with skepticism. After all, I was a teacher, certainly I would have noticed? He was only three. How could she possibly know this when he couldn’t talk? She knew because when she put out an array of fifteen index

cards and asked him to point to each word, he did so perfectly. He did this over and over, and over again. My son has some wonderful splinter skills. His ability to read, which peaked at a first-grade level, has enabled him to do some academic work throughout the years. It has also permitted him great facility with Edmark, a reading comprehension program he uses both at home and at school. At a certain point he plateaued at about the level of a six-year-old, and yet I have never been more grateful that we could read young children’s books together, that he could do some work, and most important, navigate a computer so that he could do his Google searches to his heart’s content. He is able to play a number of games on the computer, and when we recently had to switch to a new browser with different steps necessary to open it, he went with the flow like a champ. And yet, if I read him one of my blog posts, he would not comprehend it. I am certain of this as his mother, as a veteran educator, and by the work he has done for the last fourteen years he’s been in school. I know that someone somewhere is thinking “presume competence,” and I would respond that I do. I am, however, aware of his limits. I work within them and continually push his boundaries in all developmental domains so that he can be his best self, but I know when to respect who he is. The fact that he has limitations other neurotypical seventeen-year-olds have does not make him less than them.

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hat bothers me about saying “presume competence” is that to me it implies that somewhere inside my son is an almost-man who can comprehend writing and complex commands on a “typical” level, and that is just not true. He can’t, and that is okay. It also implies to me that he is somehow lacking if he does not have this advanced comprehension level, that there is something missing within my son. And this, I can say with absolute certainty, could not be farther from the truth. As a community, we need to embrace all

PHOTO COURTESY KIMBERLEE RUTAN MCCAFFERTY

DIFFERENT DRUMMER: Justin is severely autistic, non-verbal, and has intellectual disability. This does not mean that he is not intelligent. I am, however, aware of his limits. I work within them and continually push his boundaries in all developmental domains so that he can be his best self, but I know when to respect who he is. “autisms”. We need to recognize the child almost indistinguishable from his peers who knows an awful lot about Star Wars. We need to understand and support the adult child and the parents of said adult child who has aggressive meltdowns and self-injurious behaviors and intellectual disability. We need to see the girl-inbetween-worlds, who can mainstream to a point and knows she’s different and may never live independently. We need to acknowledge the boy who is non-verbal

and seems to reside in his own world but has typical intelligence. We need to embrace them all. And we need to do it now.• ABOUT THE AUTHOR: Kimberlee Rutan McCafferty, mother to two sons on the autism spectrum and an Autism Family Partner at the Children’s Hospital of Philadelphia (CHOP). Kim is also the author of a blog at autismmommytherapist.wordpress.com. Kim’s book Raising Autism: Surviving the Early Years is on sale on Amazon here.

ep-magazine.com | EP Magazine • September 2020 49

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VISION LOSS IN CHILDREN WHOSE EYESIGHT MAY BE 20/20 REQUIRES NEW DIAGNOSTIC AND TEACHING STRATEGIES SEEING THE LIGHT: CVI Program Director for Perkins School for

the Blind Ellen Mazel, M.Ed. and a student with cortical visual impairment work on a reading exercise. Mounting evidence suggests that CVI has become a leading cause of visual impairment in children in developed countries,1-3 as well as in lower and middle income nations, making it a growing global health concern.

BY KATHRYN DEMOTT

Nearly two decades ago, Ellen Mazel, M.Ed., a teacher for children with visual impairment at Perkins School for the Blind noticed a shift in her ability to meet her students’ needs. “Increasingly, my usual teaching methods were not working for many of my students,” she said. PHOTO COURTESY NIH.GOV/BURJU SARI

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n hindsight it’s clear that her teaching methods, which were geared toward people with ocular causes of vision loss, were not as effective for a growing group of students with low vision due to cerebral (cortical) visual impairment (CVI). CVI is a condition that interferes with the ability of the brain to process information from the eyes. A person with CVI has difficulty with visual processing – turning light from their eyes into meaningful information about the complex visual world around them. CVI can co-occur with ocular impairment, ep-magazine.com | EP Magazine • September 2020 51

but the visual deficits cannot be explained by the eye condition alone because the functional vision deficits are predominately brain-based. Today, Mazel oversees the CVI assessment program at Perkins, where she estimates that 60% of the entire student body has CVI.

HIDING IN PLAIN SIGHT Mounting evidence suggests that CVI has become a leading cause of visual impairment in children in developed countries,1-3 as well as in lower and middle income nations, making it a growing global health concern. In a national registry that collected data on 2,155 children with visual impairment in the U.S., from birth to age 3, CVI was the most prevalent diagnosis (24%), followed by retinopathy of prematurity (ROP) (16%) and optic nerve hypoplasia (10%). 4 In countries with national healthcare systems that more widely track causes of visual impairment, such as the United Kingdom, CVI accounts for up to 48% of cases of severe childhood visual impairment and blindness.5,6 CVI accounted for 27% of such cases in the Netherlands.7 Children with CVI can have a range of visual deficits and every case is unique. They may have poor visual acuity or limited field of vision. In addition, they may have higher-order visual processing deficits that interfere with attention and recognition. A person with CVI may miss important details. In a crowd, even family faces may be unrecognizable; a favorite toy may be undetectable in a cluttered box. Difficulty coordinating motor movements using visual cues can be challenging for some with CVI. As a child, Michael Jackel would frequently fall when he encountered stairs because he couldn’t see anything in his lower visual field. Eventually, he learned that handrails were a cue to be alert for them. At age 30, he uses a cane in unfamiliar environments to detect stairs and manage his lack of depth perception. CVI’s impact on functional vision may be more evident in certain environments or under certain conditions. For Jackel, noisy rooms interfere with his ability to see things directly in front of him. Other people with CVI have difficulty seeing in unfamiliar or cluttered environments. 52 September 2020 • EP Magazine | ep-magazine.com

WHAT CAUSES CVI AND WHY MIGHT ITS PREVALENCE BE INCREASING? Complications from premature birth are one of the leading causes of CVI. During the second half of pregnancy the brain is rapidly developing, making it particularly vulnerable to certain types of injury such as periventricular leukomalacia (PVL). PVL is associated with damage to the developing neurons and support cells in many parts of the brain, especially in areas responsible for motor function and visual processing. As a result, infants with PVL have a higher likelihood of developing cerebral palsy and CVI. CVI can also be caused by complications during a full-term pregnancy or childbirth, such as infection and prolonged oxygen

Higher survival rates after premature birth may mean that more children are at potential risk for CVI. At the same time, rates of pediatric vision loss from preventable ocular causes, such as retinopathy of prematurity and congenital cataracts, have declined precipitously in developed countries. As a result, CVI now accounts for a greater percentage of vision impairment among children in the community and also in schools such as Perkins.

DIAGNOSING CVI Evidence-based guidelines for CVI diagnosis are lacking. “Diagnosis really depends on the healthcare provider’s level of experience and suspicion that a

FUNCTIONAL VISION: As a child, Michael Jackel (left) would frequently fall when he encountered stairs because he couldn’t see anything in his lower visual field; An MRI (right) shows an adolescent with CVI associated with prematurity. Enlarged ventricles with irregular sulcal patterns (folds) in the occipital pole (a hallmark sign of periventricular leukomalacia, PVL) are apparent (arrow). deprivation and brain malformations during fetal development. Shaken baby syndrome or any type of traumatic brain injury later in life can disrupt the visual processing centers. Metabolic and genetic disorders have also been linked with CVI. Advances in neonatal care have dramatically improved survival rates of extremely premature infants (less than 28 weeks gestation). Between 1993 and 2012, the percentage of surviving infants born at 23 weeks’ gestation increased from 52% to 65%.8

child is having difficulty seeing because of functional vision deficits due to neurological damage,” said Lotfi Merabet, O.D., Ph.D., MPH, associate professor of ophthalmology at Massachusetts Eye and Ear and Harvard Medical School. If a child is not meeting age-appropriate visual developmental milestones, such as holding direct eye contact, following a slow-moving object, or reaching for objects, CVI should be considered along with eye problems.

MICHAEL JACKEL PHOTO COURTESY BERNADETTE JACKEL; MRI IMAGE COURTESY LOTFI MERABET

CVI assessment should consider both visual function and functional vision. Visual function measures eye health, visual acuity, contrast sensitivity, visual field, color perception, and eye mobility. Functional vision gauges ability to use vision for daily activities. Many people with CVI have normal visual function but still have problems with functional vision. Evaluating functional vision should incorporate contextualbased behavioral testing, Merabet said. There are very few tools that provide objective measures of functional vision in individuals with CVI. Currently, CVI assessment relies primarily on questionnaires and observational tools. One such example is the CVI Range, which uses interviews and trained observation to infer how various visual features, such as color, movement, and visual complexity impact a child’s ability to perceive their visual environment. Other screening tools or history taking tools developed in Europe, such as the CVI Questionnaire and CVI Inventory, also help clinicians understand how functional vision is impacted throughout a child’s day. Complicating diagnosis is the fact that CVI often coexists with other conditions that may be more evident to the external observer, such as cerebral palsy, autism, and attention deficit hyperactivity disorder. Rehabilitative strategies for these conditions are often visually dependent, a fact that underscores the importance of addressing the underlying CVI. Not surprisingly, CVI is commonly misdiagnosed. “I can’t tell you how many times I’ve heard parents say that they’ve been told ‘Your child’s eyes look fine. The problem is behavioral, or the child has a learning disability.’ It’s an incredibly frustrating scenario for parents who can’t get the right diagnosis,” said Merabet.

“I can’t tell you how many times I’ve heard parents say that they’ve been told ‘Your child’s eyes look fine. The problem is behavioral, or the child has a learning disability.’ It’s an incredibly frustrating scenario for parents who can’t get the right diagnosis,” said Merabet

Yet getting a CVI diagnosis can be crucial to qualifying for educational services under Part B of the Individuals with Disabilities Education Act (IDEA), which opens access to educational services and accommodations for children with disabilities, including blindness and low vision. “CVI in high-functioning children often gets written off as a behavioral problem,” said Linda Lawrence, M.D., an ophthalmologist from Salina, Kansas. Lawrence recalled a “clumsy” fourth grader who was doing poorly in school. “Her CVI had been missed for years in part because she had 20/20 vision. It wasn’t until she was diagnosed that her grades improved. She was given a cane to manage her limited lower field of vision and an individualized education program (IEP) that addressed her visual needs. It was life changing,” said Lawrence, who is a consultant member of the Pediatric Low Vision Rehabilitation Committee for the American Association for Pediatric Ophthalmology and Strabismus. Similarly, Michael Jackel was denied accommodations because standard vision testing failed to show a problem. According to his mother, Bernadette Jackel, none of Jackel’s teachers were prepared to instruct a child with CVI. “School was a nightmare,” she said. “By seventh grade, Michael was convinced that he was stupid and couldn’t learn.” Schools often lack the expertise to teach children with CVI, said Amanda Lueck, Ph.D., professor emerita of special education at San Francisco State University. Standard educational and rehabilitative approaches for people with low vision—such as magnifying text or improving contrast—fail to address the brainbased issues of CVI. “We are in the very early days when it comes to figuring out what rehabilitative strategies work in CVI. And what works for one child with CVI, doesn’t necessarily work for another,” she said. Lacking evidence-based approaches, the best current strategy is to involve a multidisciplinary team with expertise in neurology, occupational and physical therapy, and orientation and mobility training, she said. Desperate for an environment that could address his needs, Jackel enrolled as a boarding student at Perkins where he stayed until he graduated high school. Perkins made a huge difference in Jackel’s ability to progress academically, according to his mother. His typical class size went from 20 to four students. Classrooms were less cluttered. And lessons accommodated his needs; for example, teachers helped him read by presenting one word at a time

NEW RESEARCH MAY HOLD KEY TO SUCCESSFUL REHABILITATION With funding from the National Eye Institute (NEI), part of the National Institutes of Health, Merabet is attempting to quantify CVI-related changes to the brain and functional vision deficits, and compare those changes with ones that occur in ocular-based visual impairment, as a step toward gauging which rehabilitative strategies might eventually work best. Using brain imaging studies, he also hopes to better define CVI neurologically and physiologically. The work is based on an earlier study with Corinna Bauer, Ph.D., also of Massachusetts Eye and Ear and Harvard Medical ep-magazine.com | EP Magazine • September 2020 53

PROVIDING CLUES: Diffusion based imaging reveals that dorsal (white arrow) and ventral (black) visual processing streams remain intact in people with ocular causes of visual impairment, but are markedly reduced in individuals with CVI (particularly the dorsal stream implicated with spatial processing). 9 School. Together, they used a combination of imaging tests to explore the effect of blindness on the brain. They found that people who lose their vision very early in life due to ocular blindness tend to have reorganized structural and functional connections in their brains, relative to those of sighted individuals. Early blindness caused reductions in the size of visual processing structures. But brain regions involved in other functions, such as hearing and language processing, showed enhanced brain connectivity. As of yet, it is unclear how the brain changes in the setting of CVI. “Studies that provide clues about how the brain functions and adapts could bring evidence-based strategies to CVI rehabilitation,” said Merabet.10 Merabet hopes to find out if people with CVI have similar indications of brain plasticity. “We are comparing brain plasticity in CVI with individuals with ocular based impairment,” he said.

Other NEI-funded research is aimed at objectively evaluating what people with CVI can and cannot see, especially in situations where a significant intellectual disability interferes with the ability to communicate or read an eye chart. Toward that end, with NEI funding, Glen Prusky, Ph.D., director of the Laboratory for Visual Disease and Therapy at Burke Neurological Institute, White Plains, New York, developed a system that tracks eye movement to gauge how well a child with CVI can see. His system is based on observation of a reflexive behavior: When our eyes track an object gliding across our field of vision, they move smoothly. Take the object away,

and without anything to focus on, our eyes are unable to move smoothly. Building on that idea, Prusky’s system assesses how well a child sees by presenting him or her with a large visual stimulus drifting across a computer screen. An infrared eye tracker plots where the child is looking, and an algorithm determines whether the child’s eye movements are smooth, indicating their fixation on the stimulus. When the child smoothly tracks, they are incentivized to keep trying to focus by being rewarded with a favorite song. The stimulus becomes increasingly difficult to see in order to identify the limit of a child’s functional vision. “It’s really remarkable to see a child lying in bed not looking at much or tracking. And then you put this screen in front of them and you move stuff and almost like a light bulb you see them become engaged,” Prusky said.• [Note: Merabet’s research is funded by National Eye Institute grants R21EY030587 https://projectreporter.nih.gov/project_info_details.cfm?aid= 10005388&icde

and R01EY031300 https://projectre-

porter.nih.gov/project_info_details.cfm?aid=9938887&icde

Prusky’s research is supported by NEI grant R01EY030156 https://projectreporter.nih.gov/project_in fo_details.cfm?aid=9937724&icde ]

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erabet has also developed a virtual reality-based platform to assess CVI’s impact on a person’s functional vision. The system tracks and records a person’s eye movements as they explore and look for a specific target in a simulation of a real-world setting. For example, users are asked to identify a specific toy in a cluttered virtual toy box as various features of the visual scene are changed to make the task more difficult. In an another NEI-funded study, Merabet is validating the system’s usefulness for quantifying functional vision deficits, which will help lay the groundwork for developing adaptive tools and strategies to meet an individual's specific rehabilitative needs. 54 September 2020 • EP Magazine | ep-magazine.com

INSIDE THE BOX: It can be difficult to quantify functional vision deficits among people with CVI. This heat map shows visual search patterns for a virtual toy box task with yellow representing more time spent looking at an area and blue indicating less time. Note how in CVI the extent of visual area explored increases with greater task demand. Merabet hopes that such virtual reality (VR) based tools will help better assess functional vision impairments in CVI. 9

IMAGES COURTESY NHI.ORG

ABOUT THE AUTHOR: Kathryn DeMott as a Science Writer at the National Eye Institute, National Institutes of Health. She can be contacted at [email protected]

A CLOSER LOOK : MORE INFORMATION ABOUT CVI

References 1. Chang, M. Y. & Borchert, M. S. Advances in the Evaluation and Management of Cortical/Cerebral Visual Impairment in Children. Survey of Ophthalmology, doi:https://doi.org/10.1016/j.survophthal. 2020.03.001 (2020). 2. Khan, R. I., O'Keefe, M., Kenny, D. & Nolan, L. Changing pattern of childhood blindness. Ir Med J 100, 458-461 (2007). 3. Kong, L., Fry, M., Al-Samarraie, M., Gilbert, C. & Steinkuller, P. G. An update on progress and the changing epidemiology of causes of childhood blindness worldwide. Journal of American Association for Pediatric Ophthalmology and Strabismus 16, 501-507, doi:https://doi.org/10.1016/j.jaapos.2012.09.004 (2012). 4. Hatton, D. D., Schwietz, E., Boyer, B. & Rychwalski, P. Babies Count: The national registry for children with visual impairments, birth to 3 years. Journal of American Association for Pediatric Ophthalmology and Strabismus 11, 351-355, doi:https://doi.org/10.1016/j.jaapos.2007.01.107 (2007). 5. Rahi, J. S. & Cable, N. Severe visual impairment and blindness in children in the UK. The Lancet 362, 1359-1365, doi:https://doi.org/10.1016/S0140-6736(03)14631-4 (2003). 6. Durnian, J. M. et al. Childhood sight impairment: a 10-year picture. Eye 24, 112-117, doi:10.1038/eye.2009.32 (2010). 7. Boonstra, N. et al. Changes in causes of low vision between 1988 and 2009 in a Dutch population of children. Acta Ophthalmologica 90, 277-286, doi:10.1111/j.1755-3768.2011.02205.x (2012). 8. Stoll, B. J. et al. Trends in Care Practices, Morbidity, and Mortality of Extremely Preterm Neonates, 1993-2012. JAMA 314, 1039-1051, doi:10.1001/jama.2015.10244 (2015). 9. Bennett, C. R., Bauer, C. M., Bailin, E. S. & Merabet, L. B. Neuroplasticity in cerebral visual impairment (CVI): Assessing functional vision and the neurophysiological correlates of dorsal stream dysfunction. Neuroscience & Biobehavioral Reviews 108, 171-181, doi:https://doi.org/10.1016/j.neubiorev.2019.10.011 (2020). 10. Bauer, C. M. et al. Multimodal MR-imaging reveals large-scale structural and functional connectivity changes in profound early blindness. PLOS ONE 12, e0173064, doi:10.1371/journal.pone.0173064 (2017).

CVI INFORMATION FROM THE NATIONAL EYE INSTITUTE www.nei.nih.gov/learn-about-eye-health/eye-conditions-and-diseases/cerebral-visual-impairment-cvi

CVI SCOTLAND https://cviscotland.org

AMERICAN FOUNDATION FOR THE BLIND www.afb.org/blindness-and-low-vision/eye-conditions/cortical-visual-impairment-traumatic-brain-injury-and

AMERICAN ASSOCIATION FOR PEDIATRIC OPHTHALMOLOGY AND STRABISMUS https://aapos.org/browse/glossary/entry?GlossaryKey=b1bcb5d7-98a8-4938-b9fd-bbf73fdeb386

DISCOVERY EYE FOUNDATION http://discoveryeye.org/cortical-visual-impairment-what-is-it

NO MATTER WHO YOU ARE OR WHAT YOUR GOALS IN LIFE MAY BE, DISABILITY.GOV CAN HELP YOU.

LEAH

ADVOCATE, DEAF, BLOGGER, MOTIVATED, MULTICULTURAL, DREAMER, MILLENNIAL GENERATION, DISABILITY YOUTH

FIND information, CONNECT with others & SHARE ideas.

ep-magazine.com | EP Magazine • September 2020 55

A DOLL like me BY AMY JANDRISEVITS REPRESENTATION MATTERS : Ryann and her Doll Like Me; “Children need to see THEIR faces in the dolls that they play with.”

56 September 2020 • EP Magazine | ep-magazine.com

PHOTOS PROVIDED BY AMY JANDRISEVITS

Let me tell you a little bit about what I do. I pretty much have my childhood dream job. I am a doll maker. I sew dolls… but not just any dolls. I make dolls for kids who are never afforded the privilege of seeing themselves on the store shelves. My work is magical. I get to see the beauty in children that the people who love them see… and then I capture it in the sweet face of a doll.

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he kids I sew for aren’t the ones you’d see on the store shelves. “My kids” have limb differences and hand differences; albinism; scars from fires; birthmarks; cancer; medical equipment ranging from cochlear implants to feeding tubes; facial anomalies. Let’s be honest… when was the last time you walked into a toy aisle and saw a doll with one of those options? I’m going with never. In fact, these kids rarely see a likeness of themselves anywhere. I find it a bit ironic that the hashtags “representation” and “inclusion” log well over a million posts on social media… yet WHO we see in major industries and HOW we see them remains relatively homogeneous. We tend to minimize the importance of “seeing yourself” and being represented. We tend to downplay how this lack of representation plays out in a child’s life – particularly in one of the most powerful industries in the world. The toy industry! This is a billion dollar industry and it is incredibly rare to see dolls that look like the children who love them. If we want to teach kids that beauty comes in all colors, shapes, sizes and forms, let’s start with toys. Interestingly enough, my Master’s thesis was on the healing power of play. To understand the sometimes-fragile psyches of children and nurture their minds, we have to speak their language. Play IS the language of children. Psychologists agree that dolls are a critical part of therapy with children; and most would also agree that children need to see THEIR faces in the dolls that they play with. We cannot ask a child of color to pretend that the blonde, blue eyed doll on their lap is them… because it’s not. Yet, this happens all the time. Physical and medical differences are even more rare for dolls, even though millions of children have them! If we are going to become a community that believes in the health of the whole child, we have to decide that mental and emo-

tional health are of equal importance to medical care. Before staying home with my own kids, I was a pediatric oncology social worker, and I can tell you how important dolls are for a variety of reasons. Play in a hospital setting is so interesting because you simultaneously want to empower the child in a seemingly out-of-control situation; educate them about what’s happening; ease their fears; and provide comfort. Dolls are perfect for this job. We do children a disservice when we don’t give them the basic courtesy of something that looks like they do.

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y goal is simple. I want to provide children with a doll that looks like they do and I want them to see that being unique IS beautiful. I want them to experience the power in representation. Understand that WHO we see and HOW we see them matter to the millions of kids that don’t look like most of the images that they are bombarded with on a daily basis. Some of the older kids I’ve made dolls for will tell you that they never imagined how powerful it would be to see themselves in a human likeness. Because really… don’t we all want to be seen? And not only that, don’t we all want to experience the power of inclusion? I talk a lot about changing the narrative. I am fortunate that dolls have given me a platform where I can do this. Parents often tell me how the comments in public have shifted from “What’s wrong with him” or “Why does she look like that?” to “How cute that the doll is a miniature version of him!” That’s an entirely different message, isn’t it? Imagine what that sounds like to the child. A year and a half ago, a journalist wrote an article that was titled “Mom makes dolls for girls suffering from selfesteem issues at her dining room table” and I was appalled – for many reasons. I called the editor before it went to print and said as much. He said, “What do you WANT the headline to read?” to which I answered, “What do you want the story to be about? Is it about a mom who makes dolls? Or is it about kids who,

FAMILIAR FACES: Zachariah (top) and Micah (below) show that being unique is beautiful. “Physical and medical differences are even rare for dolls, even though millions of children have them!” ep-magazine.com | EP Magazine • September 2020 57

for the first time in their lives, are seeing themselves in a human likeness?” He wanted the story to be about the mom – me sewing at my dining room table. I said, “That’s too bad because you have the opportunity to change the narrative for so many kids.” I believe that the media has a chance to change the literal narrative and it’s so powerful because it gives a voice to the people who don’t have one. He laughed and said, “Do you really think your dolls have the power to do that?” I said, “My dolls don’t, but your words do.” That’s what I mean about changing the narrative. I tell every young journalist and writer that does a story on these dolls to tell it like it will go viral… because what if it does? Tell the story like these kids are depending on you… because they are. You are advocating for a paradigm shift and you can do so simply by the words you choose. I imagine that many of us have fallen into the role of “advocate” simply by what we are passionate about and what we have learned along the way. The conversation with that editor brought to mind the saying – if not me, then who?

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bout a year and a half ago, A Doll Like Me, Inc. became a 501c3, nonprofit organization and it is one of my proudest accomplishments. This is how these dolls will make their way into the waiting arms (and legs!) of kids who don’t know what “representation” means, but know what it feels like. Most notably, the nonprofit offsets the cost so that the dolls are a gift on behalf of our global community to kids who so desperately need them – kids who so desperately need to see themselves. I send dolls from as local as Milwaukee to as far away as Egypt and Columbia and Australia. Part of my role as a doll maker has evolved into “talking” about them, because it’s how we change the narrative. I talk a lot about representing children of all abilities in one of the places where it matters most – the toy market. And if I’m honest, it is such a thrill to be able to talk about something that meant so much to ME as a child… dolls! The photos of the kids with their dolls have grabbed people’s attention because they’re pretty remarkable. The dolls have since appeared in Oprah Magazine, in People Magazine, on WebMD, on CBS Evening News, and in toy, business, and entrepreneur magazines. I believe that we cannot understand the urgency of representation until we look into the face of these children… watch their reactions… and hear what they say about feeling validated. Often times

I hear from adults who will say, “Having a doll that looked like me could have been a game changer” or “I struggled my whole life with how I looked and I would have loved to have a doll that looks like me.” I even have video of some of the really little guys whose faces light up when they realize that the doll they are holding is them! One doll, made for a friend of a friend, turned into another and another… and suddenly I was looking at trademarks and lawyers and a wait list hundreds of dolls deep. That’s how I know that we are hungry for a shift… we want “representation matters” to be more than a hashtag on social media. I want people to understand how a simple act can be a catalyst for change… how a doll can ignite a global conversation on what it means to be seen. Later this month, my dolls will be a case study in a book from Google about production inclusion. I am over the moon with excitement – not because I’m hoping for doll orders. Rather, this is how the paradigm shifts. I work at my dining room table and my kitchen counter doubles as a work station. We haven’t eaten at our dining room table in over three years! As I type this, my husband is reading at the kitchen table – where the doll next to him is waiting for finishing touches. My glue gun sits on the counter so that I can do one more thing before I go to bed. My family understands that this is important to me and when you have a “calling,” for lack of a better word, you go with it. I do this because I need to. I believe that we are ready for a new narrative. Scratch that. We aren’t just ready for a new narrative… we are hungry for one. This new narrative includes everyone and gives everyone (yes, everyone) a place at the table. One of the things that I tell my doll audience is that we are consumers. Demand change. Tell people what you want to see and support the companies that are part of the paradigm shift. As for me, I like to say that the 10-year-old version of Amy is THRILLED that I still get to play with dolls many years later. I love being able to combine my passion for social work with creativity. It is a privilege and an honor to be invited into lives filled with beauty, tragedy, joy, pain, pride, and raw emotion. I get to provide dolls for those at the beginning of their lives and for those who sometimes are at the end. And sometimes this human likeness of a child is a part of the grieving process because it is a physical representation of those sweet babies whose lives are cut short. I am humbled and thrilled by the response I have received. Helping to change this narrative about WHO we see and HOW we see them is the least I can do. Remember… that which makes us different also makes us beautiful and because of that, everyone deserves to see themselves in the places that matter. Start talking. It’s ultimately your words that will change the narrative.•

SEE FOR YOURSELF: Bennett (top) and Keagan (below) share their

ABOUT THE AUTHOR:

special features with their dolls. “This new narrative includes everyone and gives everyone (yes, everyone) a place at the table.”

Amy Jandrisevits is the founder of A Doll Like Me, Inc. www.adolllikeme.com GoFundMe: www.adolllike.me

58 September 2020 • EP Magazine | ep-magazine.com

F R O M O U R FA M I L I E S … T O Y O U R FA M I L I E S

MILITARY SECTION

60 PLANNING FOR SERVICE MEMBERS By Rob Wrubel, CFP® MILITARY LIFE

62 THE MILITARY AND FAMILY LIFE COUNSELING PROGRAM THRIVE HELPS MILITARY PARENTS AND CHILDREN MARRIAGE ENRICHMENT PROGRAMS PUZZLES & CAMO

66 NO PANTS, NO PROBLEM By Shelly Huhtanen

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PLANNING FOR SERVICE MEMBER FAMILIES BY ROB WRUBEL, CFP ®

Special needs planning is complicated, there’s no getting around it. Legal, tax, governmental benefits, housing, health, life insurance and investment issues all play a role and need to be coordinated. Simple enough. Just get extra degrees and professional training as a doctor, lawyer, CPA, CFP, benefits coordinator and off you go. Who needs sleep?

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y goal is to simplify the process. Focus on one planning goal at a time, take action steps and maintain momentum to get it done. People who check off small goals find they make progress to

the big ones.

60 September 2020 • EP Magazine | www.ep-magazine.com

It’s possible and preferable to get started on financial and estate planning even if you do not know how other parts of your list of dreams will occur. No matter what, you will need to get out of debt, build emergency funds, save and invest for the future and protect benefits. Yet, without knowing why you want to do this, how it will make you feel, and what you want out of life, it’s hard to keep motivated to achieve your goals. Good planning starts when you take one hour of time to think and dream about the future and to decide what is most important for you. Carve out an hour somewhere in your schedule – in the car on a road trip, your lunch time or when your child is otherwise engaged with school, therapy or activities (I know, even harder with the COVID-19 crisis but not impossible). As a financial planner, I emphasize financial health and protecting benefits and military families have two important ones: TRICARE and the Survivor Benefit Plan (SBP). These are significant and important benefits and with Medicaid and Supplemental Security Income (SSI) you have a unique system to support a high quality of life for your family member with a qualifying disability.

H U.S. MILITARY

SOUNDS LIKE A PLAN: You have worked hard, served our country and have an additional income source that can truly make a difference. An estate plan can preserve benefits programs worth hundreds of thousands of dollars or more. Service members receive guaranteed income for life and that income can continue to your spouse or child who was disabled before the age of 18 (or 22 if a student) upon your passing. SBP presented a real problem prior to 2015 – the income had the potential to eliminate SSI and Medicaid benefits but often was not enough to replace them. Often, my planning recommendation was to replace SBP with life insurance and direct that life insurance to a special needs trust. That all changed with the passing of the National Defense Authorization Act of 2015. Disabled recipients of SBP can now direct those income payments to a first party-funded special needs trust. This was a significant and important

change which allows your family member to maintain his or her SBP income and still qualify for benefits to provide housing, additional insurance, access to programs and the SSI income. The rules around special needs trust are confusing and it’s important you know how to set-up your plan to maximize the value of this important change. 1.New trust and new forms. If you assist a person with a disability receiving SBP funds now, work with an estate planning attorney to create a new trust, fill out the necessary forms and direct SBP income to that trust. SBP funds will no longer count as income (for benefit purposes) and open access to SSI and communitybased programs funded by Medicaid. Find an attorney knowledgeable of military benefit programs. 2. You need an estate plan. Estate plans include naming key people to help your family and you in the event of your death or incapacitation. Who will take care of minor children or make medical decisions on your behalf? These people are named in your estate documents. Also, your will directs the share of your estate assets for your family member to a special needs trust, a different trust than the one that will take SBP payments. 3. This is where special needs trusts get confusing. There are two main types of special needs trusts and the main difference is how they get funded. Follow the money to understand the differences between a third-party funded trust and a first-party funded trust. First party is the person’s own money. For instance, if I get into a car accident and then move my assets from my name to a trust, this is first-party funded. My money to a trust to benefit me. If I take my money and move it to a trust to benefit my daughter with Down syndrome, this is third-party funded. My money to benefit someone else. 4. Children of service members will likely have two trusts at some point. Money from you, the parent, will go

to the third-party funded trust. Money from SBP will go to the firstparty funded trust. Why? States have a payback provision on first-party funded trusts. They provide funding for social, work and health programs (often through Medicaid) and have the legal right to repayment from funds sitting in first-party trusts. They can only be paid back up to the amount remaining in those types of trusts. You want to keep family funds and SBP funds separate to have any remaining third-party trust assets go to other family or designated beneficiaries.

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ackle your estate plan now. This is one area of planning that can be done quickly. Saving for retirement takes times and assets grow over decades. Getting out of debt also takes time – a few months or years once you commit to it. You have worked hard, served our country and have an additional income source that can truly make a difference when handled well. An estate plan can be finished in 30 days and can preserve benefits programs worth hundreds of thousands of dollars or more. It’s a quick fix that gives your family member with special needs a chance for a high quality of life. • ABOUT THE AUTHOR: Rob Wrubel is a CFP who has a daughter with Down syndrome. He is recognized as a leading expert on financial planning for families with special needs members. Wrubel has written two books about financial planning and special needs families — Financial Freedom for Special Needs Families: 9 Building Blocks to Reduce Stress, Preserve Benefits, Create a Fulfilling Future and Protect Your Family: Life Insurance Basics For Special Needs Planning — and he has been published recently by Law360.com and The Good Men Project. Wrubel holds the Certified Financial Planning (CFP®) designation, the Accredited Investment Fiduciary® (AIF®) designation from Fi360, and the Accredited Estate Planner (AEP®) designation from the National Estate Planning Council.

www.ep-magazine.com | EP Magazine • September 2020 61

MILITARY LIFE THE MILITARY AND FAMILY LIFE COUNSELING PROGRAM

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eed support for issues like preparing for a move or nurturing a relationship with a deployed spouse? The Military and Family Life Counseling Program assists service members, their families and survivors with flexible nonmedical counseling when and where needed. Military and family life counselors are highlyqualified professionals trained to understand the unique challenges you encounter and deliver face-to-face counseling services, as well as briefings and presentations to the military community both on and off the installation.

HERE TO HELP: Military and family life counselors are highly-qualified professionals trained to understand the unique challenges you encounter.

WHAT IS THE MILITARY AND FAMILY LIFE COUNSELING PROGRAM? The Military and Family Life Counseling Program offers free short-term, non-medical counseling to: • Active-duty service members • National Guard members • Reserve members (regardless of activation status) • Department of Defense expeditionary civilians • Immediate family members or surviving family members of any of the above One-on-one, couple, or group – counselors help you manage issues like: • Deployment adjustments. • Stress management • Moving preparations and getting settled • Relationship building. • A problem at work • The grieving process following the death of a loved one or colleague If you’re facing something that a counselor can’t address, you will receive a referral for medical counseling services in your community through a military treatment facility or TRICARE. In general, military and family life counselors do not address: • Abuse cases • Suicidal thoughts • Other mental health issues that may require long-term attention or medication If you are in immediate crisis, call the Military Crisis Line at 800-273-8255, and press 1, visit www.veteranscrisisline.net/get-help/militarycrisis-line, or send a text message to 838255. You can get personalized help 365 days a year by telephone and online. 62 September 2020 • EP Magazine | www.ep-magazine.com

CONFIDENTIALITY You don’t have to worry that seeking help will impact your service member’s career. Services offered through the Military and Family Life Counseling Program are confidential, not reported to the command, and do not impact a service member’s security clearance. Exceptions to privacy include duty to warn, suspected family maltreatment (domestic violence, child abuse or neglect), harm to self or others, and illegal activity.

HOW TO REACH A MILITARY AND FAMILY LIFE COUNSELOR When you are ready to focus on your emotional health, reach out for support. Contact your installation’s Military and Family Support Center at https://installations.militaryonesource.mil You can also find support for the youngest member of your military family. Contact a child and youth behavioral military and family life counselor through: • A child development center • Installation-based youth and teen centers • On- and off-installation public schools • A youth summer camp sponsored by your military Service • The commander or unit training point of contact Nearly all of those surveyed about the Military and Family Life Counseling Program would use counseling services again and would refer the program to a friend. Make an appointment with a military life counselor to improve your skills to manage military and family life. – Military One Source

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THRIVE HELPS MILITARY PARENTS AND CHILDREN The Department of Defense is committed to the health and well-being of military children and families. That’s why DOD teamed with the Clearinghouse for Military Family Readiness at Penn State to create a parenting-education program.

Manage stress. Be a positive role model. Communicate with your partner or support circle. Plan and prepare healthy meals. Manage screen time. Check out these helpful parent-resource infographics at https://thrive.psu.edu/for-parents/resources for a sample of the program.

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Thrive grows with your child. The four age-group tracks are free, available in online formats and immediately accessible. Other benefits of Thrive include: • It provides program choices that fit your family. • It promotes social-emotional, cognitive and physical health. • It is flexible. Pause your session at any time. • It is interactive and fun. • It is available to the public and shareable with family members and caregivers.

hrive is a free online program for busy parents like you. It promotes positive parenting, stress management and healthy lifestyle practices. Find out how Thrive can help you raise healthy, resilient children from birth to 18.

HOW DOES THRIVE WORK? Thrive has four interactive modules organized by age group: • Take Root: for children ages 0-3 • Sprout: for children ages 3-5 • Grow: for children ages 5-10 • Branch Out: for children ages 10-18 (Coming in 2021) Each module has tips for your child’s level. Build on strengths you have and develop new skills as your child grows and changes. Suggestions include how to: • Find a parenting style that works for your family. • Help your child make good decisions, master new skills and more. • Support your child with positive discipline techniques. • Model an active lifestyle.

• • • • •

HOW IS THRIVE DIFFERENT FROM OTHER PARENTING PROGRAMS?

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hether you are expecting your first baby (www.militaryonesource.mil/confidential-help/specialty-consultations/new-

milparent/new-milparent-the-essentials) or raising teens, let Thrive support you along the way. Learn more and enroll in the program today. Find information about other parenting resources on Military OneSource (www.militaryonesource.mil/family-relationships/parenting-and-children/parenting-youth-and-teens/top-military-onesource-parenting-resources). – Military One Source

STRIVING TO THRIVE: Thrive is a free online program that can help you find a parenting style that works for your family, make good decisions, master new skills and more.

www.ep-magazine.com | EP Magazine • September 2020 63

Coronavirus.org

Artwork by Shepard Fairey | Amplifier.org

H U.S. MILITARY

MARRIAGE ENRICHMENT PROGRAMS With deployments and frequent relocations, military relationships can be put to the test. You've aced military life. Now can you bring that same strength and sense of adventure to your marriage?

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ou can access free, confidential, relationship consultation services like Building Healthy Relationships (www.militaryonesource.mil/confidential-help/specialty-consultations/building-healthy-

relationships/building-healthy-relationships)

(www.navy.mil/local/chaplaincorps/CREDO-Map.html). These getaways include: • Weekend retreats that help couples focus on their relationships while enjoying food, fun and romance • The opportunity for couples to learn about handling conflict, growing their marriage, building intimacy, communication and understanding each other Air Force: The Air Force Chaplain Corps offers the MarriageCare program. Check with your installation's chaplain to see what's available in your area. The MarriageCare program offers: • Weekend retreats to help couples to revitalize their marriage while taking a break from military duty • A chance to work on communication, forgiveness and other skills • Other programs offered by chaplains on Air Force installations

as well as non-medical counseling through Military OneSource. Call 800-342-9647 or chat online with our trained professional consultants at https://livechat.militaryonesourceconnect.org/chat. Also, each military service branch offers programs designed to enrich marriage and maintain a healthy relationship by helping couples develop better communication skills and rekindle the romance. These programs are generally: • Run by chaplains and supported by commanders, Military and Family Support Centers, and installation family readiness programs • Non-faith-specific • Either low-cost or free to service members and spouses ONLINE TOOLS: To find out about programs available through LOVE EVERY DAY your service branch and installation (https://instalDoes daily communication with your partlations.militaryonesource.mil), check with your chapner mostly involve texts? It might be time for a lain or local Military and Family Support new way to communicate. Center. Through the center, Military and Family Take a few minutes to connect in a fun and Life Counselors are available on installations meaningful way using Love Every Day and embedded in units. Here are some service- LOVE CONQUERS ALL: Each (https://love.resilienceboost.com). This free interactive military service branch offers specific programs. tool for your mobile phone prompts you and programs designed to enrich Army: Installation chaplains offer marriage and maintain a your partner, via text, to connect in new ways. the Strong Bonds Program (www.strongbonds.org). healthy relationship by Both partners answer one question each day The program features: for 21 days. Check out the video at helping couples develop • Weekend retreats that help couples build better communication skills https://www.youtube.com/watch?v=lYVv0pllMxg (streaming and rekindle the romance. relationship resiliency YouTube is currently blocked from DOD net• Specific retreats for couples, families, single works.) soldiers and for those facing deployment Questions can focus on what you love about one another, • Activities for unit members who are on the same duty cycle provide you with new ways to get to know each other, share Marine Corps: The Marine Corps offers the Prevention and thoughts and memories, and show you care in fun ways. Log in, Relationship Enhancement Program (www.quantico.usmc- live in the moment and spark some fun with Love Every Day. mccs.org/marine-family/family-readiness/marine-corps-family-team-building-mcftb/prevention-and-relationship-enhancement-program-prep).

This program: • Benefits newlyweds and seasoned couples alike • Helps couples improve their communication skills and build strong relationships • Offers workshops through chaplains and Marine Corps Family Team Building Navy: Chaplains Religious Enrichment Development Operations offer marriage enrichment retreats. More information is available on the Navy’s ChaplainCare website

MILSPOUSE TOOLKIT From education on military culture to navigating resources, this track is beneficial for new spouses who may be experiencing a disconnect from their family and need to identify a support system in their new community. This track focuses resources to assist new and current military spouses with adjustment to the military lifestyle, developing coping skills and resources for resiliency. • – Military One Source

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PUZZLES & CAMO SHELLY HUHTANEN

No Pants, No Problem The creativity Broden has in developing ways to communicate with us using simple gestures and actions is nothing short of genius. With the simple task of changing his attire, he has told the world he is off for the day and with a short phrase of “Ready to go,” his change of scenery should change.

Even though Broden has autism with limited communication, I’m learning that he has found ways to tell me what he’s thinking or what he wants by saying as little as possible or providing simple cues. He has the ability to throw political correctness out the window and does exactly what he wants to do. He doesn’t worry about what other people think or what the repercussions will be if he chooses to act in a way that disregards all societal norms. In a way, I’m a little jealous. I can think of a handful of moments where I wanted to do one thing, but knew I shouldn’t because it wouldn’t be socially acceptable. With home ABA therapy in full swing, Broden has been working through new programs. This means that by the end of the day, he is mentally exhausted. As he is learning to be more independent around the kitchen and answering more questions about his personal background, by the end of the day he wants to go upstairs, shut the door and be left alone to his own thoughts. The other day, as 3:30 pm was slowly approaching, Broden came downstairs from his break with his pajama pants on. In our house, they are called “Papaw pants”, named after my father who is known for his comfortable indoor attire. His tutor was sur-

prised to see him halfdressed and looked over at me confused. “Broden, why did you put your pajamas on?” I looked over and smiled, “This is Broden’s way of telling you that he is officially done for the day.” She looked at him and said, “Ok. I get it. I hear you.” She honored his request. I know what Broden means when he takes his pants off close to the end of an ABA session at home. He’s saying, “I have put my “Papaw pants” on and that means I will no longer comply and I will not answer any more of your questions. Most important of all, I refuse to play another game of UNO with you today. Brilliant. He didn’t have to say a word, yet I knew exactly what he meant. Another Brodenism is the short phrase, “Ready to go.” If I am in a long conversation with someone and Broden is done waiting, he will cut in the conversation and say, “Ready to go.” It doesn’t matter who I’m

66 September 2020 • EP Magazine | www.ep-magazine.com

talking to or the subject. If I ask him to wait and he thinks I’ve asked too much of him, then he’ll lean in very close to my face where our noses are almost touching. This time, “Ready to go” sounds a little deeper with some conviction. At that moment, I will cut off the conversation very quickly. He has me well trained.

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he phrase “Ready to go” is used to communicate to me what he needs or wants in many different situations. We can be in a store shopping or at someone’s house. With the phrase, “Ready to go” he trusts that I will fill in the gaps for him. If we are in the store and I hear him say the token phrase, I’ll ask “Too many people?” or “We’ve pushed it by going to too many stores, haven’t we?” He isn’t thinking about the list of groceries I need to purchase for dinner, or the long list of errands that need to be completed. No, he’s done and he’s ready to go. I need more of this in my life and I think other people do too. There have been many times that I just wanted to stand up and say, “Ready to go” and then drive to my house and take my pants off. Shouldn’t we all have a “Papaw pants” rule? If I walk downstairs with my “Papaw pants” on in the house, everyone should know that I’m done. I need a break. Don’t ask anything of me or expect me to answer any questions.

SMARTY PANTS: “Broden’s tutor was surprised to see him half-dressed and looked over at me confused. ‘Broden, why did you put your pajamas on?’ I looked over and smiled, ‘This is Broden’s way of telling you that he is officially done for the day.’”

When my “Papaw pants” are off and my everyday pants are back on, I’ll be available. You might say that it could get a little tricky if the doorbell rang, but remember, if I had my “Papaw pants” on I wouldn’t be answering the door anyway. Everyone in the house would know that I was done for the day.

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he power phrase “Ready to go” would be a huge paradigm shift in my life. I’m in a mundane conversation with someone in the store that I really do not want to partake in at the moment because frankly, I don’t feel like it. Imagine the possibilities if I could just turn to that person and say, “Ready to go” and walk off. I probably would get some confused looks, but think about all the time I would save. Someone calls me and they’re in talkative mood, but I’m not. I could just say, “Ready to go” and hang up. Amazing concept, but with 2nd and 3rd order effects, of course. Broden’s a smart kid. His autism has

created some hurdles for him over the years and we’ve worked hard to help him develop coping skills. Hours and hours of hard work with tutors have

“Shouldn’t we all have a ‘Papaw pants’ rule? If I walk downstairs with my ‘Papaw pants’ on in the house, everyone should know that I’m done. I need a break. Everyone in the house would know that I was done for the day.” helped him with creating phrases and build a vocabulary to help him express his needs and wants, but the creativity he has in developing ways to communi-

cate with us using simple gestures and actions is nothing short of genius. With the simple task of changing his attire, he has told the world he is off for the day and with a short phrase of “Ready to go,” his change of scenery should change. No pants lead to no problems and he’s “Ready to go” when his patience has run thin. With this mantra, life would make so much more sense. • PUZZLES & CAMO Shelly Huhtanen is an Army wife stationed at Fort Benning, GA who has a child with autism. She enjoys sharing her experiences of day-to-day life caring for her son with autism while serving as an Army spouse. She authored “Giving a Voice to the Silent Many” that encompasses many stories of raising a child with autism in the military. Shelly is passionate about autism advocacy for our military and works to bring awareness to our local legislators and command about providing better support for our military autism community, such as better health care and education.

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