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PLUS: United StateS Military Section EXCEPTIONAL PARENT MAGAZINE MAY 2017

INSIDE:

MAINTAINING RANGE for MOBILITY

EXCLUSIVE: AND:

IN SUPPORT of SHELTERED WORKSHOPS MOBILITY: EP’s ANNUAL ISSUE

EMPOWERED MOBILITY through VIRTUAL PRESENCE

JACK’S STORY AN ACADEM Y RIC

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BACK-to-SCHOOL: DON’T FORGET VACCINATIONS

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CONTENTS

MAY 2017 VOLUME 47 ISSUE 5

24 22 THE ANNUAL

MOBILITY ISSUE MOBILITY FITNESS PRIORITY

22 MAINTAINING RANGE TO MAINTAIN MOBILITY By Kristin McNealus, PT, DPT COVER STORY

28 EMPOWERED MOBILITY THROUGH A VIRTUAL PRESENCE: THE ROBOT AS YOUR CHILD’S AVATAR

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By Charles M. Schwab, Architect

24 JACK’S STORY By Ottobock

FEATURES 32 CAN-DO MUSOS: THE POWER TO DO MORE By Katherine Tapia

37 BREAKING BARRIERS By Grace Nah and Brittney Norris

40 I AM CLABOOSE By Savage Glascock

50 ONE MOM’S STORY OF AUTISM: PLANET A By Diane Mayer Christiansen

54 HALLDOR BJARNASON: BUILD A BETTER RELATIONSHIP WITH A DISABILITY By William Chiu

44 SPECIAL NEEDS PARENTS NEED TO CONSIDER LIFE INSURANCE By John Latona

47 YOUR CHILD’S IEP: WHAT FAMILIES NEED TO KNOW By The Association for Special Children and Families and Lauren Agoratus, M.A.

58 SPEAKING OUT IN SUPPORT OF SHELTERED WORKSHOPS Submitted by VOR

62 CHANGING THE LANDSCAPE OF HEALTH FOR PEOPLE WITH INTELLECTUAL DISABILITIES

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Submitted by Special Olympics

ON OUR COVER Being mobile enhances a person’s ability to learn, communicate with others, earn a living and participate fully in life. We often take the ability to move in our home and environment for granted, but for those with disabilities, even the smallest step can prevent them from accessing all facets of life. EP’s Annual Mobility Issue presents ideas and innovations beginning on page 22. Photo provided by Ottobock.

EXCEPTIONAL PARENT | EP MAGAZINE • May 2017 1

CONTENTS

MAY 2017 VOLUME 47 ISSUE 5

DEPARTMENTS ANCORA IMPARO

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WORD COUNT By Rick Rader, MD

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WHAT’S HAPPENING

10 NEW PRODUCTS AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE AND DENTISTRY

14 “OTHERS” By H. Barry Waldman DDS, MPH, PHD and Steven P. Perlman DDS, MSCD, DHL (Hon), and Matthew Cooke, DDS,MD,MPH GENETIC ALLIANCE

19 INCLUDE VACCINATIONS IN YOUR BACK-TO-SCHOOL CHECKLIST

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19 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

By Claire Mena

70 PRODUCTS & SERVICES

MILITARY SECTION MILITARY LIFE

66 EARLY INTERVENTION FROM A TO Z 67 EIGHT TIPS SERVICE MEMBERS CAN USE TO MANAGE STRESS 68 HEALTHY ACTIVE CHILDREN AND ACADEMIC ACHIEVEMENT

MILITARY LIFE

66 EARLY INTERVENTION FROM A TO Z PUZZLES & CAMO

69 THIS IS NOT A DRILL By Shelly Huhtanen

67 EIGHT TIPS SERVICE MEMBERS CAN USE TO MANAGE STRESS 68 HEALTHY ACTIVE CHILDREN AND ACADEMIC ACHIEVEMENT PUZZLES & CAMO

69 THIS IS NOT A DRILL 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.

2 May 2017 • EP MAGAZINE | EXCEPTIONAL PARENT

Information and Support for the Special Needs Community

VOLUME 47 ISSUE 5



ESTABLISHED 1971

Editor-In-Chief • Rick Rader, MD • [email protected] Managing Editor • Vanessa B. Ira • [email protected] Publisher • Accounting Director of Circulation & Business Development Art Direction & Design Resource Guide Specialist Information Technology Expert

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Exceptional Parent magazine was founded in 1971 by Maxwell J. Schleifer, PhD Subscriber Services Exceptional Parent 1360 Clifton Avenue, Ste. 327, Clifton, NJ 07012

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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: http://www.eparent.com. All rights reserved. Copyright ©2017 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 rate is $19.95 per year for EP Digital. Basic annual subscription is free. Limited edition print subscription $60.00. 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. Exceptional Parent. Back issues incur a charge of $10.00 each and depend upon availability, call (800) 372-7368. Agreement # 1420542

EP EDITORIAL ADVISORY BOARD

Jean F. Campbell Principal, JF Campbell Consultants; Founding Board Member, Professional Patient Advocates in Life Sciences (PPALS) Henry G. Chambers, MD Pediatric Orthopedic Surgeon, Rady Children’s Hospital; Prof. of Clinical Orthopedic Surgery, Univ. of California, San Diego Stephen L. DeFelice, MD Founder and Chairman of the Foundation for Innovation in Medicine (FIM) Mahlon Delong, MD Chair, Dept. of Neurology, Emory Univ., Atlanta, GA

Saadi Ghatan, MD Assistant Prof. of Neurological Surgery, Division of Pediatric Neurological Surgery, Columbia College of Physicians and Surgeons, Columbia Medical School, New York, NY Joan Earle Hahn, DNSc, RN, CS, CDDN Assistant Adjunct Prof., Univ. of California, Los Angeles School of Nursing; Past President, Developmental Disabilities Nurses Association Matthew Holder, MD President of the American Academy of Developmental Medicine & Dentistry; Global Medical Advisor for Special Olympics International, Louisville, KY David Hirsch, MD Medical Director at UnitedHealthcare Jerry Hulick, GA Emeritus Massachusetts Mutual Life insurance Company, Special Care Planning

Gary Liguori Fellow of the American College of Sports Medicine (ACSM); Department Head of Health and Human Performance, University of Tennessee Chattanooga, Chattanooga, TN Patricia E. McGoldrick, CPNP Pediatric Neurology & Epilepsy, Associate Director, Developmental Disability Center, Roosevelt Hospital, NY Barbara Mintz MS, RD Vice President of Healthy Living & Community Engagement, Barnabas Health, West Orange, NJ Frank J. Murphy President and CEO, EP Foundation for Education, Atlanta, GA Kathryn O’Hara, RN Epilepsy Nurse Clinician, Nurse Manager Child Neurology, Division of Child Neurology, Virginia Commonwealth University, Richmond, VA

Steven P. Perlman, DDS, MScD, DHL (Hon) Clinical Prof., Boston University, School of Dentistry, Boston, MA 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 Esther Schleifer, MSW Clinical Social Worker, Boston, MA Howard Shane, PhD Director, Communications Enhancement Center, Children’s Hospital, Boston, MA Jo Waldron President and Co-founder of the Able Kids Foundation and Partner at Brain Basket, LLC, Fort Collins, CO Steven M. Wolf, MD Director of Pediatric Epilepsy at Beth Israel Medical Center, New York, NY; Director of Pediatric Neurology at St. Lukes Roosevelt Medical Center, New York, NY

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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

Bernard A. Krooks, ESQ Littman Krooks LLP, New York, NY

John M. Pellock, MD Prof. and Chair, Division of Child Neurology, Virginia Commonwealth Univ., Vice President of the American Epilepsy Society (AES)

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Ronald G. Blankenbaker, MD Univ. of Tennessee Health Science Center, Chattanooga, TN; President, American Association on Health and Disability

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

Mary M. Keller, ED.D President and CEO, Military Child Education Coalition, Harker Heights, TX

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

Dr. David Fray Associate Professor, Department of General Practice and Dental Public Health, University of Texas School of Dentistry, Houston, TX

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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

EXCEPTIONAL PARENT | EP MAGAZINE • May 2017 3

ANCORA IMPARO

RICK RADER, MD



EDITOR-IN-CHIEF

Word Count I think readers of this magazine would nominate two words that would give “cellar door,” and “tremulous,” a run for their money. They certainly convey “comfort and the deepness of human relationships.” They are “exceptional” and “parent.”

Not sure how many I used since I woke up this morning; but I just used 19 of them. I know because I counted them. That is one thing you can do with words. They can be counted and, in fact, when you are writing an article or a column, you almost have to count them. There are just so many you can put on a page. For years we have been instructed to count our words. I remember entering contests, “In 25 words or less, tell Roy why you want to win the pony.” I remember (in a grant application review) to describe in 200 words, “how would you trace the source of the contradictory findings by using a complex design in which both the original independent variable and the independent variable that is presumed to be responsible for the discrepant findings are manipulated in the same experiment.” I imagine they are still waiting for my response. I understand that on some online dating sites they require you, in 50 words or less, to describe your spiritual-emotionalintellectual aspirations as they relate to finding a life-long companion, including your preference for long or short walks on a tropical beach in search of Clypeasteroida specimens. I hate the software that restricts the number of words you can use in a “response field” that includes a “count down indicator.” It’s as if you are defusing a bomb and the digital counter reminds you that you only have six seconds before it blows up. It’s cruel to know you only have 4 May 2017 • EP MAGAZINE | EXCEPTIONAL PARENT

13 words left to summarize your justification for implementing an “intergenerational model of inclusion.” According to Johnny Ling, “The number of words in English has grown from 50,000 to 60,000 words in Old English to about a million today. An average educated person knows about 20,000 words and uses about 2,000 words in a week.” So what do the world’s most celebrated “wordsmiths” think about “words?”

“Words can be like X-rays if you use them properly – they’ll go through anything. You read and you’re pierced.” Written by a guy, Aldous Huxley (Brave New World) who knew a thing about X-rays and depicted life seven centuries after the twenthth century. “She had always wanted words, she loved them; grew up on them. Words gave her clarity, brought reason, shape.” Famous for his novel, The English Patient, Michael Ondaatje describes clarity, reason and shape as the three vehicles words can provide. Louisa May Alcott, the author of Little

Women, mused, “I like good strong words that mean something.” Roald Dahl, the British novelist and fighter pilot, referred to as “one of the greatest storytellers for children of the 20th century,” gets my vote for cutting to the chase with, “Don’t gobblefunk around with words.” Clever, since “gobblefunk” is a word that says it all (the ultimate goal of any word). The British Council, two words that conjure up images of stuffy aristocrats with the titles of Lord, Sir, Duke and Viscount is a British organization specializing in the spread of the use and adoption of the English language. In a smoke-filled, wood paneled study with overstuffed leather chairs, they came up with a challenge. They posed the question, “What is the most beautiful word in the English language?” They surveyed more than 7,000 English speakers in 46 countries and came away with a confusing array of nominations. Confusing is the key “word,” because the concept of a “beautiful word” has two sets of plausibility. There was the usual collection of “beautiful words;” words that had their roots in the “beauty” of the thing the word conveyed. So it was no surprise to find “liberty,” “tranquility,” and “smile.” These reflected beautiful concepts, expressions or visions. Who could argue with any of those three words being beautiful? But like all things, that’s too “easy” (another candidate for a beautiful word). Neuroscience enters the picture and “easy” gets placed on the “pile” (a word that has never been considered beautiful). Seems there is something called “phonoaesthetics,” the science that studies both sound and phonology and how it influences our appreciation of what is beautiful or, more precisely, what “sounds” beauti-

WHAT’S HAPPENING ful—apart from what the word actually means or represents. Christina Sterbenz writing for Business Insider shares, “Robert Beard, a former linguistics professor at Bucknell University created his own list of beautiful words. Through careful research, he determined 100 English words that people seem to like most though may not use frequently. Some eccentric yet notable words include ailurophile, inglenook, and Susquehanna.” It’s a given that it is virtually impossible to separate sounds entirely from their meaning. Words with positive images, like “hugs” and “kisses,” make us warm and fuzzy. Words from the dark side of humanity, like “combat,” and “disease,” may make us cringe and shudder. Of course there’s always someone who creates a criteria of what constitutes anything… in this particular case we are pondering, “What constitutes a beautiful word?” Our guide to applying this designation is Sir David Crystal, a Fellow of the Chartered Institute of Linguistics and Founding Fellow of the Learned Society of Wales (really). Crystal serves as a consultant to Babel – The Language Magazine. The Crystal Criteria of Beautiful Words insists that the words contain more than three syllables, has the stress on the first syllable, uses “m” and “l,” contains consonants that appear in English with high frequency but eliminates those with low frequency and uses short vowels, articulated in a mid or low position, in the front of the mouth. Ah beauty is so simple when you have a checklist. His top choice for the most beautiful word is “tremulous.” And because it fits every category it’s a shoe-in (a

word that hardly meets his criteria). Somewhat of a departure from Crystal is J.R.R. Tolkien, “the Father of Modern Fantasy Literature,” famous for his high fantasy works, The Hobbit and The Lord of the Rings. Tolkien declared that “cellar door” was the most beautiful word in the English language. This caused another wordsmith, C.S. Lewis to take up the cause, “Close your eyes and say it – slowly. Cellar door. Somehow, kind of lovely, right? I was astonished when someone first showed that by writing ‘cellar door’ as Selladore, one produces an enchanting proper name.” Getting back to the British Council, they decided that the most beautiful word in the English language was “mother” – “an unglamorous word, yet one that conveys comfort and the deepness of human relationships.” Whatever your choice, I think readers of this magazine would nominate two words that would give “cellar door,” and “tremulous,” a run for their money. While these words may not check off all the boxes of the Crystal Criteria, they certainly convey “comfort and the deepness of human relationships.” They are... “exceptional” and “parent.”•

“The number of words in English has grown from 60,000 words in Old English to about a million today. An average educated person knows about 20,000 words and uses about 2,000 words in a week.”

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

A MESSAGE FROM THE EDITOR IN CHIEF Exceptional Parent Magazine has signed on to support the Florida Waiting List Floridians with developmental disabilities receive services that allow them to lead productive lives. Unfortunately, the need for services outpaces the funding available. Thousands of Floridians are waiting for the services they need. To help or learn more, please visit: http://ddwaitlist.cbcs.usf.edu/partners.html |

http://ddwaitlist.cbcs.usf.edu/

CODING AUTISM TRAINS ADULTS WITH AUTISM TO CODE

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very year, the number of people diagnosed with autism rises, however, there are simply not enough quality programs designed towards training adults with autism with real-world career skills. As a result, too many are either unemployed or working in menial jobs below their skill level. To help adults with autism learn the fundamental skills necessary to secure an entry-level web developer job, LA-based Coding Autism has announced a new program to train those with autism how to code. To help fund the program, and allow contributors to provide for scholarships so that the entire 15-person first class can attend tuition-free, Coding Autism has launched a crowdfunding campaign at: startsomegood.com/coding-autismtraining-adults-with-autism-in-code. Coding Autism’s first web development boot camp is called the ASPIRE Web Development Immersive. This is a 15-week, full-time course where students will be learning the fundamental skills of coding. The first class will take place at Hub 101 in Thousand Oaks, CA (Greater Los Angeles Area) with online classes planned in 2018. “It is completely unacceptable that our autistic community is experiencing an over 80% unemployment and underemployment rate,” said Oliver Thornton, CEO & co-founder of Coding Autism. “As passionate advocates who have either been diagnosed with autism ourselves or have family members affected with autism, we understand that with the right resources, training, coaching and environment that individuals with autism can thrive in the workforce.” By founding Coding Autism and launching the ASPIRE Web Development Immersive, Mr. Thornton believes that they can create highly qualified, skilled, and eager to work autistic employees to fill job vacancies in the tech industry. Students that want to enroll can receive more information at: CodingAutism.com • EXCEPTIONAL PARENT | EP MAGAZINE • May 2017 5

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Artistic Programming for Children on the Autism Spectrum Lincoln Center Education’s 2018 Festival ussell Granet, Executive Vice President of Lincoln Center Education (LCE), Community, and International, announced today the inaugural Big Umbrella Festival – the world’s first month-long festival dedicated to arts programs for children on the autism spectrum and their families, set to launch during Autism Awareness Month in April 2018. The festival is an outgrowth of Lincoln Center Education’s longtime commitment to making art accessible in all forms to diverse audiences. Thoughtfully curated with their unique needs in mind, Big Umbrella’s core objective is to enrich the lives of children on the autism spectrum through inclusive art that engages, educates, and inspires.

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continuing this trailblazing model with a second original commission, titled Campfire, also from local Trusty Sidekick Theater Company – one of three theater companies who will participate in 2018’s Big Umbrella Festival. Joining Trusty Sidekick will be U.K.based Oily Cart (In a Pickle) and Australian Sensorium (Oddysea), whose collaborative methodologies and international reach reflect the synergic mission of Big Umbrella. “Lincoln Center’s Big Umbrella Festival will feature groundbreaking, high-quality theater designed specifically for young people on the autism spectrum and their families. The multi-sensory experience is a perfect event to time with Autism Awareness Month,” said Council Member Andrew Cohen, Chair of the

SETTING THE STAGE: Up and Away (left) and In a Pickle will be the groundbreaking features of the month-long Big Umbrella Festival, the world’s first festival dedicated to arts programs for children on the autism spectrum and their families. Spanning April 9 to May 6, 2018, the festival will include three original interactive theater productions presented both at local schools and on the Lincoln Center campus, as well as a symposium and professional development opportunities for artists, arts professionals, and presenters, with the aim of bringing the community together around the topic of neurodiversity. “We believe the arts can be transformational and that every child should have access to a quality arts education,” said Granet. “Our past performances for children on the autism spectrum have made a notable positive impact on our young audiences, and we hope Big Umbrella will be a safe space where they can continue to find and create lasting meaning through tailored programs.” In 2013, LCE became the first major cultural institution to commission an original work for this audience, titled Up and Away. While some institutions have offered sensory-friendly programming or adapted versions of existing works, Up and Away’s model was ground-breaking because it was created specially for an audience on the autism spectrum across all production aspects: script, design, and experience. Featuring an immersive 360-degree installation design, the experience included pre-show preparation materials, one-to-one interaction with actors, and an adjacent quiet room, among other features. This month, Lincoln Center is

PHOTOS COURTESY LINCOLN CENTER EDUCATION

Committee on Mental Health, Developmental Disability, Alcoholism, Substance Abuse, and Disability Services. “I look forward to experiencing the festival, which builds on the great success of Lincoln Center’s original work, Up and Away, and its second original commission, Campfire. These important works demonstrate Lincoln Center’s deep and longstanding commitment to making the arts more accessible to young audiences with special needs.” LCE is a global leader in arts education and advocacy, and is the education cornerstone of Lincoln Center, the world’s largest performing arts complex. LCE is committed to enriching the lives of students, educators, and lifelong learners by providing opportunities for engagement with the highest-quality arts on the stage, in the classroom, via digital platforms, and within the community. This effort was recognized last year by the New York City Council, which officially named March “Lincoln Center Education Month” in honor of its 40 years of outstanding and innovative work in the community. Lincoln Center has become a leading force in using new media and technology to reach and inspire a wider and global audience. Reaching audiences where they are—physically and digitally—has become a cornerstone of making the performing arts more accessible to New Yorkers and beyond. EXCEPTIONAL PARENT | EP Magazine • May 2017 7

THE PARENTS' CONCISE UNITED NATIONS ASKED FOR BETTER OVERSIGHT FOLLOWING INCIDENT INVOLVING TEEN WITH AUTISM GUIDE TO CHILDHOOD he Ruderman Family Foundation, an to participate in the event with his peers VACCINATIONS

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international leader in disability inclusion, called on the United Nations to intervene after the United Nations Educational Pilgrimage for Youth, Inc. (UNEPY) Board of Directors’ decided to exclude 15-year-old Niko Boskovic from their annual UNEPY event this summer, allegedly because of his autism. Boskovic had won an essay contest that had earned him the trip and was, according to reports, rejected after the program’s board of directors learned of his disability, JAY RUDERMAN: “We stating, “They call on UNEPY to redon't have the issue an invitation to staff and knowl- participate in the edge to be event with his peers accountable for who have equally and someone with a fairly earned their spots as delegates, disability.” just as Boskovic has.” “For an organization focused on human rights it is nothing short of disgraceful to be discriminating against Boskovic due to his disability and denying him his civil right to be included and accommodated,” said Jay Ruderman, President of the Ruderman Family Foundation. “We call on the United Nations to condemn this decision by UNEPY. We also call on UNEPY to issue an apology to Boskovic as well as to re-issue an invitation

who have equally and fairly earned their spots as delegates, just as Boskovic has.” Based on reports, Boskovic, who lost his ability to speak and was diagnosed with autism at the age of three, was set to join 300 other winners for the annual UNEPY trip this summer, which brings together teens to visit areas of the US and Canada to teach them about the United Nations. Again, based on reports, when Niko’s mother, Loreta, emailed the organization to tell them she would be accompanying Niko because of his disability, she was surprised to receive an e-mail back stating that chaperones were not allowed and the group was unequipped to take on the responsibility for Niko. The Convention on the Rights of Persons with Disabilities is an international human rights treaty of the UN intended to protect the rights and dignity of persons with disabilities, aiming to promote, protect, and ensure the full enjoyment of human rights by persons with disabilities and ensure that they enjoy full equality under the law. The Foundation calls on the UN to uphold its values in this case and take a stand for Boskovic. The Ruderman Family Foundation is an internationally recognized organization, which advocates for the full inclusion of people with disabilities in our society. The Foundation supports effective programs, innovative partnerships and a dynamic approach to philanthropy in advocating for and advancing the inclusion of people with disabilities throughout the United States and the world.

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ow updated to reflect the latest findings and research, The Parents’ Concise Guide to Childhood Vaccinations, Second Edition provides the latest available information on vaccinations for children -- including the meningococcal, HPV vaccinations and rotavirus -- as well the most-up-to date schedules and additional information parents need to know to help them make the right decisions regarding vaccines. Regardless of where you stand on the issue of childhood vaccination, everyone agrees that the health of our children is paramount. For those who have chosen to vaccinate, The Parents’ Concise Guide to Childhood Vaccinations offers both practical medical and natural remedies to avoid possible side effects. If you have chosen not to vaccinate your children, the book also includes natural medicines to strengthen your child’s immune system, along with tips on how to deal with legal exemptions, school requirements, and medical insurances. Lauren Feder, M.D. was a nationally recognized physician who specialized in holistic health and was board certified in homeopathic medicine. Author of Natural Baby and Childcare and Natural Pregnancy, she was affiliated with La Leche League, Holistic Pediatric Association, and the National Center for Homeopathy. Letrinh Hoang, D.O. is a pediatrician in private practice offering holistic, integrative pediatrics. She is a graduate of the University of New England, College of Osteopathic Medicine and received her pediatrics training at Loma Linda University Children’s Hospital. •

AHCA/NCAL CONGRESSIONAL BRIEFING JUNE 5-6 AHCA/NCAL’s Congressional Briefing provides an important opportunity for you to personally meet with your Members of Congress and their staff. Come and get an update on the latest happenings in long term and post-acute care, make an effective plan of action with your peers in the health care field, and get fired up to take your message to the hill. The changing political landscape makes it more important than ever to raise your voice and be heard. Get an update on all that's happening on the Hill. Hear from multiple speakers, including Keynote Speaker 8 May 2017 • EP MAGAZINE | EXCEPTIONAL PARENT

Fox News chief political anchor Bret Baier, as well as key Members of Congress.Take advantage of networking opportunities with your long term and post-acute care peers. Enjoy two springtime days at the Hyatt Regency Washington on Capitol Hill. Registration for this event is exclusively for long term and post-acute care provider members of AHCA/NCAL and AHCA/NCAL Associate Business Members only. The conference registration fee is complimentary. The advance registration deadline is Monday, May 8. Register at: www.ahcancal.org IMAGE COURTESY NOAM GALAI / RUDERMAN FOUNDATION

LEADERSHIP UPDATES AND OPENING KEYNOTE SPEAKER 8:00 AM – 9:45 AM Speaker: Mark Parkinson President/CEO, AHCA/NCAL Speaker: Holly Jarek, ID/DD Committee Chair, SC VP NHA, Vice President, Seven Hills Foundation Speaker: Gary Kelso NFP Council Chair, President/ CEO, Mission Health Services

OPENING KEYNOTE SPEAKER ALDEN MILLS Industry innovator, Navy SEAL commander, and author Alden Mills is pioneering a new category of leadership and challenging conventional management principles. He has a proven track record of turning individuals into teammates and teammates into unstoppable teams. With lessons that might surprise you, Mills shares his four four pillars to building and leading unstoppable teams and why his leadership mantra, a “TToo lead is to serve and to serve is to care,” is the foundation of his Real Leaders C.A.R.E. methodology.

EDUCATION SESSIONS S Overview and Discussion of the New Emergency Preparedness Requirements

Behavioral Health Creating Liva able Environments 11:00 AM – 12:00 PM

Speaker: Barbara Speedling, Quality of Life Specialist, Innovations for Quality Living This session opens a provocative conversation on the impact of the changing demographics in long term care on quality of life for those being served. Lunch inside the Expo Hall 12:15 PM – 1:15 Documentary Screening: Mimi and Dona 1:30 PM – 2:30 PM

Facilitator: Sophie Sartain, Award-winning Writer and Filmmaker What happens when love runs out of time? For a 92-year-old mother, Mimi, who has cared 64 years for Dona, a daughter who has an intellectual disability, it means facing the inevitable—the likelihood that she will not outlive her daughter and the need to find her daughter a new home. This poignant, heartbreaking and, at times humorous documentary traces this process through the story of a quirky and deeply connected mother-daughter duo. The Impact of Personal V Values alues on Serving Individuals with Intellectual/Developmental Disabilities 2:40 PM – 3:40 PM

Speaker: Michael A. Gillette, PhD This interactive, case-based seminar will explore ethical issues that emerge when the personal values of providers come into conflict with the needs and desires of individuals served.

10:00 AM – 11:00 AM

Speaker: Jason Belden, Distaster Preparedness Program Manager, California Association of Health Facilities Speaker: Peggy Connorton, LNFA – Director, SNF Operations, Covenant Retirement Communities Speaker: David Weidner, MPH, REHS, MEP, CEM – Director, Emergency Preparedness, Health Care Association of New Jersey Join providers and experts in a panel discussion to learn more about the new emergency preparedness requirements impacting Skilled Nursing Facilities (SNF), Nursing Facilities (NF) and Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICF/IID). The rule, which was released in September of 2016, goes into effect in November 2017.

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NEW PRODUCTS TEMPER TAMERS IN A JAR

er, or a bilateral coordination exercise. Comes in assorted colors.

Temper Tamers in a Jar is a behavioral management activity designed to assist children and adults manage their emotions during difficult situations and express their feelings in positive ways. The colorful jar includes 101 “Temper Tamer Cards” that will help promote group discussions about healthy ways to deal with anger. Individuals can also use cards to learn calming strategies for tense or difficult situations. Recommended for ages 8–11. Includes: 101 cards, three-inch recyclable plastic screw top jar.

THERAPRO, INC. 225 Arlington Street Framingham, MA 01702 Phone: 800-257-5376 Fax: 800-268-6624 Web: www.therapro.com Email: [email protected]

FREE SPIRIT PUBLISHING INC. 6325 Sandburg Road, Suite 100 Minneapolis, MN 55427 Phone: 612-338-2068 Fax: 612-337-5050 Web: www.freespirit.com Email: [email protected]

BENDEEZ Bendeez is a sensory toy and silent fidget that is designed for people of all ages with upper extremity and emotional disabilities to use. It is a 15-inch rubbery band that bends and twists into infinite shapes and designs. It is safe and portable, and can be used in classrooms, at home, and more. It can be wrapped around a pencil for an enhanced pencil grip, used as a stress reliev-

TAP-N-SEE NOW Tap-n-See Now is an iOS app designed for children with cortical visual impairment (CVI). The program makes it possible for parents and therapists to adapt to their child's expanding visual and physical ability. Tap-N-See Now incorporates Dr. RomanLantzy's common characteristics of CVI. Hand-drawn images dance around the screen one at a time, appealing to a child's preference for movement. The use of a single image against a solid background helps eliminate visual clutter, while the use of

highly saturated colors makes the image easier to see. Touching the image results in a reward sound as the image grows in size. All aspects of the app are fully customizable to meet the needs of the child. LITTLE BEAR SEES Web: www.littlebearsees.org

ABLEDATA The ABLEDATA database of assistive technology and rehabilitation equipment contains information on more than 30,000 products for persons of all ages who have a physical, cognitive, or sensory disability. Products are chosen for these pages by the ABLEDATA staff based on their specific applicability to or design for children who have disabilities. ABLEDATA, operated by New Editions Consulting, Inc., is funded by the National Institute on Disability and Rehabilitation Research (NIDRR) under contract number ED-OSE-13-C-0064. For more information on these and other assistive devices, or to submit product information for the database (and possible inclusion on this page), contact: ABLEDATA, 103 W. Broad Street, Suite 400, Falls Church, VA 22046; phone: 1-800-227-0216; TTY – 703-992-8313; website: www.abledata.com; email: [email protected]; twitter: https://twitter.com/AT_Info; Facebook: https://www.facebook.com/abledata. 10 May 2017 • EP MAGAZINE | EXCEPTIONAL PARENT

ACHIEVE GREATER INDEPENDENCE WITH ABILITIES EXPO! Discover cutting edge products, the latest resources and fun activities for the disability community

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Explore your possibilities! People with disabilities, caregivers and healthcare professionals will experience: • Leading technologies • Life-enhancing products • Illuminating workshops • Daily living aids • Adaptive sports • Inclusive dance • Assistance animals • Art for all abilities • Essentials for seniors • Family-friendly fun From leading devices to expert advice to the opportunity to network with others in the community, Abilities Expo has everything you need, all under one roof!

UPCOMING EVENTS Chicago: June 23-25, 2017 Houston: August 4-6, 2017 Boston: September 8-10, 2017 San Mateo: October 27-29, 2017 DC Metro: December 1-3, 2017 Toronto: January 19-21, 2018 Los Angeles: February 23-25, 2018 New York Metro: May 4-6, 2018

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NEW PRODUCTS TALKING CONTAINERIZING TOY The Talking Containerizing Toy is an educational toy for children with learning or cognitive disabilities to learn shapes and matching through sorting, stacking, and dropping. When a shape hits the bottom, the pre-recorded message will play (up to 20 seconds). As this simple task is repeated, the child learns shape matching and identification. Remove the sorting lid and larger objects can be used. The sensitivity can be adjusted to accommodate items of differing weights. ENABLING DEVICES 50 Broadway Hawthorne, NY 10532 Phone: 800-832-8697 Fax: 914-747-3480 Web: www.enablingdevices.com

STRATEGIES AT HAND Quick and Easy Strategies for Working with Students on the Autism Spectrum is a set of color-coded resource cards designed to be used by teachers who are teaching children with Autism Spectrum Disorders (ASD). The cards contain numerous easy-to-implement strategies for parents, teachers, and other professionals in all types of educational settings and situations. It includes practical ideas for the classroom, field trips, assemblies, the school bus, cafeteria, and more. Each color-coded tip card includes behavior interventions, communication systems, academic/environmental adaptations, sensory and social strategies, reinforcement methods, and more. Features a book-mark-style format so teachers can tuck it into pockets or student folders. Cards are coated for durability, with a single hole punch for storing on a metal ring if desired (not included). THERAPY SHOPPE INC. PO Box 8875 Grand Rapids, MI 49518 Phone: 800-261-5590 Fax: 616-696-7471 Web: www.therapyshoppe.com Email: [email protected]

12 May 2017 • EP Magazine | EXCEPTIONAL PARENT

DRESSING VESTS Dressing Vests are a sensory motor tool for children ages three and up who have sensory integration, sensory processing, body awareness, and/or motor planning challenges. The vest gives them fastener and dressing skills practice that helps with their daily routine. Features elastic side panels that fit most children. Designed for therapy, school, clinic, or home use. Choose from a Snap Vest or Button/Zipper Vest. Not for children under three. ESPECIALNEEDS, LLC 1850 Borman Court St. Louis, MO 63146 Phone: 877-664-4565 Fax: 800-664-4534 Web: www.especialneeds.com

DOT-TO-DOT ALPHABET LACING ANIMALS Dot-to-Dot Alphabet Lacing Animals is an activity designed for children three and up with intellectual or learning disabilities. It can be used to build bilateral coordination skills and for helping children learn the correct sequence/order of the alphabet. It includes a set of alphabet letters lacing cards for children to start with “A” and lace their way all the way to “Z”. This educational toy play set includes six cards and six laces.

PLAYMONSTER 1400 E Inman Parkway Beloit, WI 53511 Phone: 800-524-4263 Fax: 608-362-8178 Web: www.playmonster.com Email: [email protected]

AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE & DENTISTRY The emphasis on these specific groups should not overlook the realties that nationally more than 150,000 children less than five years of age have hearing and/or vision difficulties and 2.8 million older children have one or more disabilities.

“Others” BY H. BARRY WALDMAN DDS, MPH, PHD, STEVEN P. PERLMAN DDS, MSCD, DHL (HON) AND MATTHEW COOKE, DDS, MD, MPH

e prefer to dichotomize things. Something is heavy or light. A person is tall or short. Someone is nice or not nice. Something is hot or cold – but is that according to Centigrade, Fahrenheit, Kelvin or some other celestial measurement systems? Things tend to get fuzzy when we become more specific. How tall is tall? How nice is nice? And so forth… Similarly it is comforting when we simplify our relationships with others. We “know who we are.” It’s “them” who concern “us.” Now for each of “us” there are “thems” who may be very different from the “thems” of others. For example, consider family relationships. • Things are great when races “A” marries “A” and “B” marries “B”. But what happens when “A”s marry “B”s? Now we have “A-B”s • Now “A-B” marries either “A-B,” “A,” “B,” or “C” we get… you can see the complexities. • Now add another group, “H” which uses another criterion (e.g. ethnicity) which includes all races. How does one “dichotomize” that situation? Since 1989, the National Center for Health Statistics has tabulated birth data according to the mother's race. “The racial and ethnic categories set forth in the standard should not be interpreted as being primarily biological or genetic in reference. Race and ethnicity may be thought of in terms of social and cultural characteristics as well as ancestry. The category which most

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closely reflects the individual’s recognition in his community should be used for purposes of reporting on persons who are of mixed racial and/or ethnic origins.”1 Now add the fact that each of us tends to interpret survey questions from their own perspective. For example, on St. Patrick’s Day, there are probably more people who claim Irish ancestry than whose particular ancestors could have stood shoulder-to-shoulder on the Island. Then there are the Italians, the Germans, and in Australia there are more claimed descendants of the original prison colony than could have reached those shores by the entire modern cruise fleet. In addition to all that, one of us (HBW) claims to be Bessarabian (now called Moldova) based upon his father’s birthplace.

DISABILITIES, “A”S, “B”S AND THE “OTHERS” The Census Bureau provides a veritable library of information on virtually all aspects of life in this country and many others. In the past, much of the data often were presented in terms of the “traditional” racial classifications (usually, white, black, sometimes Asian and ethnicity, i.e. Hispanic). Only in the 2000 and 2010 have classifications been broadened to take consideration of the “homogenization” of our increasing complex societies. All too often, in our efforts to present the realities of the tens of millions of residents of all ages with disabilities, we emphasize

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. 14 May 2017 • EP Magazine | EXCEPTIONAL PARENT

SIGNIFICANT OTHER: The availability of the “others” demographic data not only provides a more realistic picture of our contemporary society, but it gives us the opportunity to recognize that even among these smaller groupings there are youngsters (and the not so young) with disabilities. national numbers and their impact on their families and the general society in such terms that are beyond the comprehension of most individuals; e.g. hundreds of millions and billions of dollars of costs just seem like the number of snowflakes in the middle of a storm to people who are clipping coupons to make ends meet. To some degree we break these numbers down in terms of the traditional use of race/ethnicity partings. The availability of the

Table 1. Number of U.S., California, Texas, New York and Wyoming children (in 000s) (less than 18 years) with disabilities by races and ethnicity: 2010. 2 Number US CA TX NY WY Single category White 1,976 173 192 86 5 White without Hispanic 1,598 83 41 73 4 Black 517 23 2 31 na Native American 40 5 2 1 .1 Asian 60 17 4 5 na Native Hawaiian & Pac. Isl. 5 1 .2 na na Some other races 166 37 25 16 .1 2 or more races 205 27 13 9 .3 Hispanic (may be of any race) 608 143 132 37 1 Note: Numbers have been rounded

“others” demographic data not only provides a more realistic picture of our contemporary society, but it gives us the opportunity to recognize that even among these smaller groupings there are youngsters (and the not so young) with disabilities. For example, nationally and in the three largest population states, there are thousands, tens of thousands and hundreds of thousands children with disabilities in one or more of the traditional and “other” categories. We can now review the number of youngsters with disabilities in the smallest population state (Wyoming, with a population of 563,000 in the last census 3), including 4,230 white- non-Hispanic children, 270 youngsters of two or more races, and 800 Hispanic children. (see Table 1) Note: These data are available from the Census Bureau for the younger and older

Table 2. Number of U.S. children (in 000s) by types of disabilities: 2010 2 Number Under 5 yrs Either vision or hearing difficulty, but not both 117 With both hearing and vision difficulty 39 5 to 17 yrs One type of disability 2,097 Two or more types of disabilities 701 EXCEPTIONAL PARENT | EP MAGAZINE • May 2017 15

CHALLENGE The charge is to update and revitalize our understanding and appreciation of the new information about children with disabilities that has become available from the 2010 census. The “others” data (by congressional districts, cities, etc.) can be used to reach politicians at the federal, state and local levels as they themselves seek to come to terms with the evolving fabric of their constituencies. Take advantage of times? You’re darn right! • ABOUT THE AUTHORS:

LOOKING WITHIN: The charge is to revitalize our understanding and appreciation of the new information about children with disabilities that has become available from the 2010 census. age groups, by state, county, cities, congressional districts and other local areas. But the emphasis on these specific groups should not overlook the realties that nationally more than 150,000 children less than five years of age have hearing and/or vision difficulties and 2.8 million older children have one or more disabilities. (see Table 2) Note: These data (with increased types of disabilities) also are available from the Census Bureau for the younger and older age groups, by state, county, cities, congressional districts and other local areas.

H. Barry Waldman, DDS, MPH, PhD - Distinguished Teaching Professor, Department of General Dentistry at Stony Brook University, NY; E-mail: [email protected] Steven P. Perlman, DDS, MScD, DHL (Hon) is Global Clinical Director, Special Olympics, Special Smiles and Clinical Professor of Pediatric Dentistry, The Boston University Goldman School of Dental Medicine, Private pediatric dentistry practice – Lynn MA. Matthew Cooke, DDS, MD, MPH is Associate Professor, Departments of Anesthesiology & Pediatric Dentistry University of Pittsburgh School of Dental Medicine Pittsburgh PA; Assistant Clinical Professor, Departments of Oral & Maxillofacial Surgery and Pediatric Dentistry Virginia Commonwealth University School of Dentistry, Richmond, VA.

References 1. Answers.com How do you determine your race if your father is black and your mother is white? Web site: http://wiki.answers.com/Q/How_do_you_determine_your_race_if_your_father_is_black_and_ your_mother_is_white#ixzz1kT6c11za 2. Census Bureau. Disabilities. Web site: http://factfinder2.census.gov/faces/tableservices/jsf/pages/productview.xhtml?pid=ACS_10_1YR_B18108&prodType=tablehttp://factfinder2.census.gov/faces/nav/jsf/pa ges/index.xhtml. Accessed January 25, 2012. 3. Ranking of states. Web site: http://en.wikipedia.org/wiki/List_of_U.S._states_and_territories_by_population. Accessed January 25, 2012.

Jacob Sanchez Diagnosed with autism

Lack of speech is a sign of autism. Learn the others at autismspeaks.org/signs.

16 May 2017 • EP Magazine | EXCEPTIONAL PARENT

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GENETIC ALLIANCE

Medical professionals say that the risk of contracting a vaccine preventable disease is infinitely higher than the likelihood of a vaccine-related adverse reaction.

Include Vaccinations in Your Back-to-School Checklist BY CLAIRE MENA

At the beginning of last school year, many California parents had an additional item to check off before their children attended the first day of class: vaccinations. In a sweeping victory for public health officials, and to the disappointment of many parents, a new mandatory vaccination requirement was made for California students: no shots, no school.

GENETIC ALLIANCE The world’s leading nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities. EXCEPTIONAL PARENT | EP Magazine • May 2017 19

arents are no longer able to cite religious or personal beliefs as a qualification for opting out of mandatory vaccination schedules. On average, about 80,000 students in California utilize the personal belief exception each year, but now, without a valid medical condition such as allergies or immune system deficiencies, a parent will have to choose between adhering to the new law, homeschooling, or leaving the state. The California mandate was spurred after a 2015 Disneyland incident. During this time, thousands of people vacationed at Disneyland enjoying Splash Mountain, Mickey Mouse’s house, and the jungle cruise. Yet over 40 people left with more than just the magic of Disneyland, they came home with a dreaded case of measles. By April, the disease had spread to 17 states and the District of Columbia, leaving at least 188 people fighting off symptoms including dangerously high fevers, widespread itchy rashes, potential reproductive harm, and the characteristic white spots inside the mouth. So how did this outbreak occur? Scientist say that for a community to be protected from certain infectious diseases, there is threshold of 96 percent of the population that needs to be vaccinated. This is called herd immunity. When less than this percent of the population is vaccinated, viruses are able to make their way into the community and spread from person to person. A California State Department of Health’s survey suggests that only 91 percent of children in California had obtained the measles vaccine prior to the outbreak. Why are parents opting out? Many parents fear the negative effects that can occur from vaccinations and while they are incredibly rare, they are possible. After getting a vaccine, a child may experience redness, itchiness, or swelling at the site of the injection or even a fever, headache, or fatigue while the body builds immunity. This will typically go away in a few days, but the severity can extend beyond the short term. For certain vaccines, about one in a million are at risk of deafness, permanent brain damage and long term seizures, coma, and lowered consciousness. While these side effects can worry parents, it is important to remember that vaccines are tested for safety. Before a vaccine can be approved, it must go through an extensive testing process by the manufacturer, FDA, and medical professionals. Additionally, in recent years, parents have opted out in fear of a causal relationship between autism and vaccines, but there is no scientific evidence

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that supports a relationship between the two. So who supports vaccines? This list includes the Center for Disease Control, the vast majority of physicians, Medicaid, and health insurance companies to name a few. Medical professionals say that the risk of contracting a vaccine preventable disease is infinitely higher than the likelihood of a vaccine-related adverse reaction. Vaccinations are considered a part of the standard of care and are a common preventative health measure to not only protect the individual, but the health of the community. Those who have compromised immune systems, such as children with cancer, cannot be vaccinated and are put in risk when dangerous diseases start circulating. So, while diseases such as measles and mumps may seem like a thing of the past, this has been done accomplished largely through an increase in vaccination efforts. In certain areas around the world, the presence of these diseases is still remains common, and with growing mobility, they can easily be brought back to the U.S. Getting ready for school. In addition to new backpacks, binders, and back-toschool clothing, children must be updated on their vaccinations. While other states may not be as stringent on the vaccination requirements like California, each one determines its own respective immunization requirements for enrollment and attendance at school and childcare centers. To see what your state requires, the CDC outlines it here. Parents can also speak with their child’s school or childcare center or contact the state Immunization Program or Department of Health to learn more about the requirements.

Vaccinations are considered a part of the standard of care and are a common preventative health measure to not only protect the individual, but the health of the community.

20 May 2017 • EP Magazine | EXCEPTIONAL PARENT

o what can you do? Learn about what is required and what is not. Depending on the state, parents may have the option to selectively choose vaccinations or opt out. But when doing so, be sure to consult a doctor and understand the risks. While vaccines are incredibly important for the health of your child and those around them, it is important to be informed and know what decisions you can best make for your family. •

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ABOUT THE AUTHOR: Claire Mena is an Engagement and Outreach Specialist at Genetic Alliance. She previously worked in breaking news and now focuses on the relationship between health care and enhancing patient-centered information. You can find her @clairemelise

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THE FITNESS PRIORITY

KRISTIN MCNEALUS, PT, DPT

THE ANNUAL

MOBILITY ISSUE

WITHIN RANGE: A decline in range of motion can happen over time; prevention is easier. Keeping range exercises on the regular schedule teaches your child to make it a priority as they grow into adulthood and set a schedule.

Maintaining Range to Maintain Mobility If you have not received skilled instruction on how to perform range of motion, it may be beneficial to learn how to gently perform stretches firmly to safely prevent and improve any limitations, but also while not causing injury.

Given this month’s theme of “mobility,” I considered many ways to approach this article. As a physical therapist, I concluded that range of motion has the greatest impact on a person’s ability to move, as well as to be comfortable. I recently saw a gentleman who is about 40 years old, and he has cerebral palsy with significant spasticity and multiple contractures. Contractures are abnormal shortening of muscle tissue, which has become highly resistant to stretching. Even though he is fully grown, his range has declined over the past two years to the point where he can no longer reach the joystick on his power wheelchair. This demonstrates the need for range of motion exercises to be a lifelong practice. Range of motion refers to the full move22 May 2017 • EP Magazine | EXCEPTIONAL PARENT

ment potential of a joint. There are several factors that can limit the full range of any joint: • Bony growth: there are certain neurological injuries that can cause excess bone to grow in joints, and even cause calcification in muscle. This cannot be corrected with home exercise. This bone shows up on x-rays, and there is a hard end of the range because of the bone stopping on bone without the typical join cushioning. • Muscle length: this is the most common cause for limited range. Muscles can get tighter, and shorter, and a joint will be cannot move as far as it was built to reach because the muscle and tendon is not long enough.

• Pain: if it hurts to move through a range, it is natural to not move into pain. We see this whenever a person is limping to avoid feeling more pain in whatever joint is injured. • Inflammation: this is generally associated with pain. If there is fluid in any joint space, the ability for the bones and joint structures to move around the inflammation is restricted. • Spasticity: if there is a neurological injury that causes increased tone in muscles, this can be strong enough to limit joint movement. Range of motion exercises will be altered and have a different goal depending on the

cause of the limitation. If you or your child has ever had physical therapy, you were probably instructed in range of motion exercises. These are added to a long list of things that need to be done regularly, and often get triaged off the daily care. It gets harder to fit these in as your child gets older and there are more activities vying for time. It is important to keep regular range exercises on the schedule. As a child grows, the muscles need to lengthen with the bones. This will be more difficult if there is hypertonicity. If muscles get tight, walking will be difficult. The gait pattern could be altered. An example would be hamstring tightness, which are the muscles on the back of the thigh and cross the knee joint. Hamstring tightness could limit the ability for knees to get fully straight. Walking on flexed knees is fatiguing and less stable. You could see how while a child grows, this can get more difficult and lead to less walking. If your child uses a wheelchair, limited range can affect positioning. More compo-

Inclusion Works for Opportunity

nents may be added to wheelchair to keep the head upright and vision facing forward. If a child has scoliosis, a lateral support pad is added to the wheelchair; however, if this scoliosis progresses, the pelvis may start to tilt. Poor positioning can lead to skin breakdown. Limited range can contribute to pain and discomfort, and as range is limited, repositioning for improved comfort gets difficult. Transfers are more difficult when range is limited. If a body cannot be positioned properly, transfers may need assistance, they may be unsafe, or a mechanical lift may be required. Often, tightness can progress over time; prevention is easier. Additionally, keeping range exercises on the regular schedule teaches your child to make it a priority as they grow into adulthood and set a schedule. It would be good to teach your child how to do his own stretching when and if that is possible, and make a game to make sure it gets performed. If you have not received skilled instruc-

tion on how to perform range of motion, this may be beneficial to learn how to gently perform stretches firmly to safely prevent and improve any limitations, but also while not causing injury. A physical therapist could provide any training that you may need. • THE FITNESS PRIORITY Kristin McNealus, PT, DPT, ATP received her Masters in Physical Therapy from Boston University then went on to earn her Doctorate in Physical Therapy from MGH Institute of Health Professions. She has been a staff physical therapist on inpatient rehabilitation for people with spinal cord injuries at a number of hospitals in Southern California, as well as Director of a community adaptive gym for people with neurological injuries. She is a member of the International Network Spinal Cord Injury Physiotherapists, and has contributed to the APTA Guidelines for Exercising with a SCI. She has completed 3 marathons, and 25 triathlons, including the Ironman! SCI Total Fitness is designed to promote health and wellness for people with physical disabilities.

Inclusion Works for Business

National Disability Employment Awareness Month

#InclusionWorks OFFICE OF DISABILITY EMPLOYMENT POLICY UNITED STATES DEPARTMENT OF LABOR

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Inclusion Works for Innovation

EXCEPTIONAL PARENT | EP MAGAZINE • May 2017 23

THE ANNUAL

MOBILITY ISSUE

The OBSS Ortho-Shape lightweight back support incorporates body alignment, pressure distribution, and directional forces for comfortable postural control.

24 May 2017 • EP Magazine | EXCEPTIONAL PARENT

Jack’s father decided it was time to try a custom contoured back. The lightweight back support incorporates body alignment, pressure distribution, and directional forces for comfortable postural control.

JACK’S STORY or an individual who relies entirely on a wheelchair for mobility, anything that increases comfort and support is a welcome addition to the wheelchair seating configuration. Not only does the new Ottobock Ortho Shape wheelchair back provide Jack Dunn with needed postural support, it also gives him more freedom of movement. “He is more relaxed and comfortable now,” reports Jack’s father, Jim Dunn.

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ack is 18 years old and has cerebral palsy. He lives at home in Oregon with his father and twin sister. He is paraparetic, nonverbal, and has intellectual impairment. Although his left hip is permanently dislocated and he has developed contractures in his hamstrings and both wrists, he has some independent movement in his hands and legs. He needs assistance with all

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PHOTOS PROVIDED BY OTTOBOCK

of his personal activities of daily living and depends on a wheelchair pushed by a caregiver for mobility. To help manage his posture, Jack is rotated between his bed, wheelchair, and a standing frame each day. Despite these interventions, he had developed severe scoliosis. “He had a small rotation and a 72-degree curve,” Jim says. EXCEPTIONAL PARENT | EP Magazine • May 2017 25

About a year and a half ago, Jack had spinal surgery from T1 to L3, which straightened the curve to 11 degrees. After the surgery, Jack was put in a standard wheelchair seat with a flat back and lateral supports. The straight wheelchair back wasn’t providing the support necessary to maintain the spinal correction, and the supports under his arms were restricting his movements. Jack’s father decided it was time to try a custom contoured back. Like the OBSS Ortho-Shape custom contoured seating system, the OBSS Ortho-Shape back is a clinically based solution developed for individuals with high positioning needs. The lightweight back support incorporates body alignment, pressure distribution, and directional forces for comfortable postural control. “One of the things we noticed right away with the new back is that he’s using his arms a lot more,” Jim says. In addition to the OBSS Ortho-Shape wheelchair back support, Ottobock also fabricated an OBSS Tru-Shape custom-contoured wheelchair seat cushion for Jack. “Before we switched over to the custom-contoured wheelchair seat cushion, Jack was developing a pressure

ulcer on his gluteus maximus,” Jim says. “The seat has made a big improvement on that.” These improvements to his seating configuration may also help Jack to be more productive and expressive during his school and leisure activities. Jack attends school and travels to and from school in a wheelchair-adapted van. During his time at home, he enjoys watching videos and listening to music. Although he is not able to talk, he has developed some basic communication skills. “He makes a smile for ‘yes’ and says ‘no’ by shaking his head or looking down,” Jim says. Jack is also learning to use head switches to communicate via an iPad.

The improvements to his seating configuration may also help Jack to be more productive and expressive during his school and leisure activities. “He makes a smile for ‘yes’ and says ‘no’ by shaking his head or looking down,” said Jim Dunn

oon, Jack will transition to an adult living program, which he will attend five days a week until he is 21 years old. After that, he may be able to join the state’s Employment First program, which provides full- and parttime employment services to individuals with intellectual and developmental disabilities.• (Republished with permission from Ottobock.)

CUSTOM CONTOURED WHEELCHAIR BACK SUPPORT ttobock Healthcare’s newly released OBSS™ Ortho-Shape back is designed for active wheelchair users and dependent wheelchair users with high positioning needs. Its lightweight custom back support incorporates body alignment, pressure distribution, and directional forces for comfortable postural control. A digital scan is all that is needed to start the process of creating the custom contoured back before the shape is reproduced using state-of-the-art CAD/CAM production processes and high-tech materials. Additionally, if the user’s body conditions change, the contours can be easily modified in the field to accommodate changes and ensure a better fit. The padding on the back and around the edges relieves pressure points and improves user comfort, and the Evolight material helps keep skin dry and cool and reduces skin breakdown. Finally, the intelligent ergonomic mounting system provides six inches of freedom allowing users or caregivers to make adjustments in all three planes — tip anterior/posterior, rotate left/right, and tilt left/right — for maximum balance and postural control. OBSS Ortho-Shape combines an orthotic approach to postural positioning with the ease of digital ordering. Your client’s shape is reproduced in ABS plastic, which is vacuum-formed to replicate the digital image you create with the cutting-edge Sense™ 3D Scanner. The end result is a lightweight, incredibly accurate custom-molded back support

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26 May 2017 • EP Magazine | EXCEPTIONAL PARENT

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1 Intelligent ergonomic mounting system provides 6˚of freedom to make adjustments in all three planes – tip anterior/posterior, rotate left/right, tilt left/right for maximum balance and postural control. 2 Augmented padding on the back and around the edges relieves pressure points and aids in improving comfort. 3 Removable liners to accommodate growth. 4 Ability to modify contours after delivery to create an even better fit for your patient, making a big difference in positioning and comfort.

SHAPE OF THINGS TO COME: Not only does the Ottobock Ortho-Shape wheelchair back provide Jack Dunn with needed postural support, it also gives him more freedom of movement to interact with his family and his environment.

that incorporates body alignment, pressure distribution, and wellappointed directional forces for postural control. OBSS OrthoShape’s unique design easily accommodates minor modifications even after BACK TO THE FUTURE: The sleek design of the the finished back reflects the innovative technology utilized in development. Weighing less than product has 5lbs with hardware, the OBSS Ortho-Shape been delivered. Back is easy for caregivers to transport. Augmented padding on the back and around the edges relieves pressure points and improves comfort, and the Evolight material helps keep skin dry and cool and reduces skin breakdown. The cover can be easily removed from the back shell to wash. Like all Ottobock seating products, the new OBSS Ortho-Shape comes with unparalleled service and support. Ottobock provides sameday turnaround on quotes, a five- to ten-day turnaround on fabrication, a two-year warranty, a 60-day satisfaction guarantee, and reimbursement support. With OBSS Ortho-Shape, Ottobock is changing the

shape of custom back support solutions. “Ottobock has been a leader in custom contoured seating for over two decades,” stated Frank Oschell, Vice President of Human Mobility for Ottobock North America. “We were the first to introduce digital image capturing into the patient fitting process and we recently introduced the industry’s first affordable handheld 3D scanner. Now, with the introduction of the OBSS Ortho-Shape Back, we’ve expanded our custom seating portfolio by taking a more orthotic approach to wheelchair seating that provides active and involved users greater postural support and more freedom of movement.”

FOLLOW THE LEADER: Ottobock is focused on one thing: getting a great seating solution for the end user. Take a tour of the state of the art facilities of the industry leader in custom mobility solutions. https://www.youtube.com/watch?v=MxTScntnnv0 EXCEPTIONAL PARENT | EP Magazine • May 2017 27

THE ANNUAL

MOBILITY ISSUE Telepresence robots – used today by children’s hospitals, various healthcare providers and individuals alike – can provide virtual mobility by allowing your child to go somewhere and move with freedom when he or she may not be able to physically be there, 100% in person.

Empowered Mobility Through a Virtual Presence

THE ROBOT AS YOUR CHILD’S AVATAR BY CHARLES M. SCHWAB, ARCHITECT

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elemedicine models for healthcare have been growing in recent years. These programs allow specialists to perform consultations between hospitals and remote areas or populations. Telemedicine is especially useful for complex and homebound patients, wherever they live. Robotic telepresence appliances take telemedicine to a higher and more personal level. These combine audio “hearing” and visual screens, which actually represent a person's face, with traditional telemedicine. Robotic telepresence devices are remote controlled and enable a person to represent themselves in a distant location, giving them the freedom to move around as if they were actually there. 28 May 2017 • EP Magazine | EXCEPTIONAL PARENT

PHOTOS PROVIDED BY BERN TERRY

OH, THE PLACES YOU’LL GO: The VGo has given Cris Colaluca the gift of academic and social freedom and the ability to stay involved despite his medical limitations. His hope is that other homebound children can also enjoy the same freedom.

elepresence robots are being used today by children’s hospitals, various healthcare providers and individuals alike. In this article, I hope to show you how they can provide virtual mobility by allowing your child to go somewhere and move with freedom when he or she may not be able to physically be there in person. The robot is controlled, in real time, by the person whose face is represented on the screen of the remote controlled robot. The robot can be controlled from thousands of miles away. The person controlling the robot can drive it where he or she wants, look at what they want, and collaborate or communicate with whomever they want, offering freedom for the user. This can be truly mobility empowering for the individual using the robot. The robot can serve as your child or youth’s avatar by being their “eyes and ears” in a remote location. There are two scenarios that I’d like to explore that are intended to illuminate how a robot can help your child become “mobility empowered” and look at what you can do in your own home to accommodate it. There are currently a limited number of product line brands of telepresence robots available in the USA. In this article I am namely referencing a model product robot named VGo, pronounced “Vee-Go.” There is another brand device named Giraffe Plus being used in Europe. Its application has heretofore been primarily for the elderly so we won’t explore that model at this time. Since VGo is currently being used in pediatric cases, it makes sense for us to look at this particular model. It also appears (based on significant research) to

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be the most developed of these robots. Scenario 1: A robot has the ability to provide virtual mobility to a bedridden child by delivering his or her presence at a specific location or event. The robot can go to school or to a basketball game for example, when the child is ill or cannot be physically present for any given reason. The rolling robot, delivered to the predetermined location and a 6" LCD screen, becomes the face of your child. In this manner it might be alluded to as his or her virtual avatar.

How to Operate the Robot from Home as an Avatar • The robot is controlled by a person from a personal computer, laptop or tablet. • Robot device arrives in a box via mail weighing no more than 30 pounds. • The family installs VGo client app on their computer. It operates with Windows, Mac, iPad or iPhone • The installed app provides high quality, two way audio and video at the robot. • The rolling robot is delivered to the predetermined location where the child cannot be in person, but the robot can. • A 6" LCD screen shows the face of the child, as seen through the camera on his laptop or tablet at home. The robot screen "head" shows the child’s face. • Above the "robots "face" LCD screen is a camera that acts as the child’s “eyes” at the remote location. • When the user positions their mouse pointer on the screen, driving controls appear. EXCEPTIONAL PARENT | EP Magazine • May 2017 29

• The user simply clicks the direction they want to drive, and the VGo moves in that direction. • Vgo accelerates and mobility begins. It also operates with keyboard arrows, trackpad and adaptive mice. • The robot is representing your child or youth from a remote location, as your child’s Avatar, and by being there when he or she can’t. • It might be possible for a community to purchase one and use it in a lending library. Different people can “dial in” to control it, with different codes at different times. The camera can pan around and look anywhere: up, down and all around. The robot camera “eye,” or robot camera lens, can be turned down to the floor if the person or place being viewed, prefers to not be seen by the robot controller. This may be necessary for privacy or any number of reasons. Scenario 2: A doctor or primary health care provider makes a virtual house call. Robots are also used by doctors making house calls without having to actually go to the home in person. The travel time required by both the doctor traveling to a patient at home, or the child patient having to travel to a hospital or rehabilitation clinic, can be eliminated. In-Home Post-Op Care the telepresence robot is also being used to provide medical services in patient homes, initially for post-operative pediatric patients. When the child patient returns home to their family after surgery, a VGo is included with the care package provided to the home.

MOTHERS DAY COURTESY E-BOOK Charles M. Schwab, Architect and author, has created a how–to design E-book just for you: Child Access Bed and Bath, A Parents’ Accessible Home Design Guide, for Children and Youth with Mobility Needs. Strategies for planning, design & detailing are offered for rental, new & remodeled homes. Healthy bedrooms with light, color, comfort & efficient function will save time and money. Changing spaces for hygiene & dressing with lifts and space for two at the vanity, toilet, shower & bath, with water play & ecology, is design for youth as a whole person. Funding & transfer lists in this useful book also include design & space assessment for two people using mobility aids. Includes B&B home addition plans. Child Access Bed and Bath offers growth & self-determination, self-reliance, autonomy and self-efficacy through design participation. The book is available free for 4 days May 12-15, sign up now at: www.ChildAccessBedandBath or www.UniversalDesignOnline.com or email [email protected]

30 May 2017 • EP Magazine | EXCEPTIONAL PARENT

TAKING CONTROL: The person controlling the VGo can drive it where he or she wants, look at what they want, and collaborate or communicate with whomever they want, offering freedom for the user. The following information was obtained from VGo product literature:

How Primary Health Care Providers Use the Robot • A variety of clinical specialists, including the surgeon, can use VGo to make very efficient house calls both on a scheduled basis, and on-demand if problems or questions arise after surgery for example. • While it is anticipated that this use could improve patient outcomes, the most important economic driver is to reduce readmission by addressing issues in the home. • The doctor or other user can move delicately around the confines of a child’s home bed room, move close in to get the best viewpoint for the doctor’s visual examination. • The doctor’s face is shown on the screen and the virtual doctor can then "step back" to observe the patient or to address family members or colleagues. • With control from the remote, the doctor can slowly pan around the room or join a colleague walking down the hall. • In a large hospital for example, a VGo could roam the premises all the while the doctor remains in one location.

ILLUSTRATION BY CHARLES SCHWAB

Home Design for Mobility and Robots too! You might be wondering what you need to do in your own home environment to accommodate the benefits of robot use. There are steps you can take to prepare your own home when the virtual doctor comes to visit. The following are some key considerations: • The robot can drive itself up a 1 inch rise by 12 inch run slope ramp. This ramp is the steepest allowed by the ADA. It can drive from a drop off point into the building. • The VGo robot moves similar to a center drive wheelchair, it has a minimal 15 inch turn diameter. Size at the base is 13 x 15 inches. • It can roll over a 1" threshold. Its ability to negotiate minimum floor variations accommodates varying floor surfaces. • A non-slip solid surface floor or low pile closed loop carpet no deeper than ¼" is best. • Good lighting with no or low glare will make it easier to see the 6 inch LCD screen. • Because VGo “hears,” like any other conversation, the less background "noise" there is, the easier it will be for the distant user/controller to hear a private conversation. • VGo recognizes large objects, and therefore will not run into walls and furniture. It will be easier (and safer) for the user to operate when clutter is removed. • Keep the area in front of the charging station free and clear of clutter or other objects. The VGo can locate and then roll to, and find its home docking and charging system all by itself, so a clear, clutter free access route needs to be provided so it can get to its dock. • It weighs only 22 pounds with a 12 hour battery and 18 pounds with a 6 hour operating battery. There are no floor load concerns

because it is so light. • Consider what is at your back when a robot is viewing you. Think of it as filming a video: many of the same procedures apply when communicating through the virtual avatar. • A home internet router can be used but if not available, VGo has an embedded Verizon 4G LTE sim card so it can connect to a cellular network. Users say that the single, most empowering part of using VGo is that they are autonomous and independent in the remote location. Bern Terry, a spokesperson for VGo communications says he has heard children exclaim: “Look Mommy I’m walking, I can walk.” That surely sounds like real virtual mobility to me. • ABOUT THE AUTHOR: Charles M. Schwab is an Architect specializing in fully accessible and universal design homes for over 20 years. It was after his grandfather suffered a series of strokes in 1992 that he realized that most American homes do not meet the needs of those with mobility needs. In 2005 he completing his first accessible home plan book, Universal Design Smart Homes for the 21st Century, 102 plans you can order and build. He designs accessible and universal design home remodels, additions and new homes throughout the USA and Canada. He contributes to many access magazines and has started a new design blog. His new book Child Access Bed and Bath is written and designed to be easy to read, cost and time friendly and jargon free, It will be useful to families after injury or disease resulting in the need to use mobility aids at home. It will be helpful to therapists, architects and designers alike. For further info. contact [email protected]

References 1. Health Attitude: Unraveling and solving the complexities of Healthcare, 2015 John Patrick 2. Interview & literature, Bern Terry, www.vgocom.com Home-bound education

NO MATTER WHO YOU ARE OR WHAT YOUR GOALS IN LIFE MA AY Y BE, DISABILITY.GOV DISA BILITY.GOV CAN HELP YOU.

MA RIA MARIA

DETERMINED, DE TERMINED, INDEPENDENT, INDEPENDENT, PROUD, PROUD, NURTURING, NURTURING, INTELLIGENT, IN TELLIGENT GIVING, GIVING SPIRITUAL, SP PIRITUAL INSIGHTFUL INSIGHTFUL

FIND information, CONNECT with others & SHARE ideas.

EXCEPTIONAL PARENT | EP Magazine • May 2017 31

WILLING AND ABLE: Can-Do Musos (left to right) Joe Hardy, David Segal, Andrew Hewitt, Dom Famularo and Mike Mignogna during their National Association of Music Merchants appearance in 2015.

C A N - D O

M U S O S

BY KATHERINE TAPIA

The Can-Do Musos’ mission is to be a global voice for disabled musicians. It hopes to connect people and bring hope to many. This organization wants to provide its members with an outlet through which they can express themselves by means of their music and art, and let their passion flourish. 32 May 2017 • EP Magazine | EXCEPTIONAL PARENT

PHOTOS PROVIDED BY DAVID SEGAL

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any times disability is confused with inability. A group of musicians, with members from different countries in the world, is determined to break away from the stigma that having a disability carries. They want people to understand that disability does not mean inability, just a challenge. To do that, they promote the work of challenged musicians whose love and passion for music thrives through a façade that hides their talents. These innovators are Can-Do Musos. They want to show the world that people who have disabilities are not defined by them, and can overcome them. Their name, Can-Do Musos, comes from the conjunction of two terms. Can-Do refers to having a positive, energetic attitude, believing that things can be done. Musos are people who are very passionate about their music and perfecting their craft. Can-Do Musos’ mission is to be a global voice for disabled musicians. It hopes to connect people and bring hope to many. This organization wants to provide its members with an outlet through which they can express themselves by means of their music and art, and let their passion flourish. The concept for what would come to be Can-Do Musos was conceived at Dom Famularo’s Wizdom Drumshed studio in Long Island, New York on March 15th, 2013. David Segal from Connecticut, Andrew Hewitt from Australia, Mike Mignogna from Tennessee, and Dom Famularo came together to brainstorm ideas. They wanted to create something that would empower musicians with disabilities, and help them gain acceptance. As a result, they came up with an organization that would help music students with disabilities by networking and promotion of their art. Currently, there are 270 members from 31 countries, and this community of musicians continues to grow. Dom Famularo, David Segal, Andrew Hewitt, and Mike Mignogna, are founders of Can-Do Musos and part of its Board of Directors. Joe Hardy, from California, joined their efforts later on as an Associate Board Member. Dom Famularo has over thirty years of professional drumming experience. He is not only a drummer but also an author, educator, and motivational speaker. He has

been dubbed as “Drumming’s Global Ambassador.” He is constantly traveling to different places to teach and speak to others. David Segal is a professional drummer who plays different genres, adding his unique style. Segal is a fighter. He was born with arthrogryposis, which made his hands and feet clubbed. However, this did not stop him from following his passion. Although his left hand was essentially non-functional, and his right hand had no wrist flexion, he found a way, through wristbands and prosthetics, to never give up and fulfill his dreams. His own disability is what motivated him to form the group. Andrew Hewitt is an inspirational drummer from Australia. Hewitt was born with cerebral palsy, which limits the function of

“The Can-Do Musos want to speak especially to people with disabilities, to foster engagement.

They want them to be inspired to follow their hearts and be actively involved in activities that nurture their passion.” his arms and legs. However, he has been able to manage to have a successful career in drumming for more than twenty years. He is also a teacher, motivational speaker, and disability advocate. Mike Mignogna was also born with cerebral palsy. However, this has not stopped him from playing drums since he was eleven. Mignogna has written a book, Look Ma No Feet, to assist people with little to no use of their legs who wish to learn how to play drums. Joe Hardy is a versatile drummer. He plays different rhythms, from heavy metal to jazz. He was born with no legs. Although this continues to be a challenge, his determination and perseverance have allowed him to stay strong and have a successful career as a professional musician. Famularo, Segal, Hewitt, Mignogna, and Hardy all work together to run this nonprofit organization. Each is committed to

support musicians with disabilities. They may have different backgrounds, but all of them are united by their love for music and their willingness to help others. David Segal, one of the founders of CanDo Musos, stated the vision and mission of the organization. “We want to be a platform for musicians with all kinds of disabilities, either physical, mental, or intellectual, even for people who are in the process of overcoming tough illnesses such as cancer or just had a surgery. We want to provide them with support and access to resources. We are very liberal, very open to everyone,” Segal shared. Being part of the Can-Do Musos community bonds musicians with disabilities in a special way. It lets them know that they are not alone, and that there is a network of support available to them. These musicians get to share their experiences, challenges, and happiness. In addition to this, they also benefit from the positive attention they receive from the media as part of this community. Members from Can-Do Musos get to display their talents and be known through the website, candomusos.com. Many have been offered work opportunities. “We get very excited every time one of our members is given an opportunity. Some people in the community have been presented with job offers, thanks to the attention they get on the website. BBC was doing a huge commercial for the Paralympics; they got ten people from the community to do this, even flew them up there, and paid their expenses,” Segal said. As in any big family, every story of success is reason for happiness. It inspires other members to continue pushing themselves to perform to the best of their abilities and overcome challenges. It encourages them to not give up, to persevere and not let anything get in their way. Can-Do Musos made history in 2015 when about ten of its members performed at the NAMM (National Association of Music Merchants) Show in Anaheim, California. They were the first disabled band to perform in a show of such magnitude. The NAMM show is the biggest trade show in North America. Music may become essential in a person’s life. For Can-Do Musos members, music has become a motivation to help them overcome difficulties, and has EXCEPTIONAL PARENT | EP Magazine • May 2017 33

FINDING HIS GROOVE: David Segal is a professional drummer who was born with arthrogryposis, which made his hands and feet clubbed. He found a way, through wristbands and prosthetics, to never give up and to fulfill his dreams. His own disability is what motivated him to form the group. touched them in such a sensible way that it has become an important part of their lives, giving them meaning. It helps them transcend beyond their limitation and allows them to write their own story through it. Music is what ties all of Can-Do Musos members. It motivated Mike Mignogna to fight for his recovery after surgery when he was younger. It gives Andrew Hewitt wings. For David Segal, music is that powerful stimulus that impassions him. He might have chosen drums, but he acknowledges the beauty of music in any of its expressions. “Music touches me in an emotional level. I am extremely touched by any kind of music. I am deeply moved by it. Music touches a deep part of me, and helps me express who I am. The same may be true for the rest of us [Can-Do Musos’ members],” Segal said, while trying to express the common sentiment that unifies the Can-Do Musos community. One of the goals of this organization is to create awareness and promote fairness of 34 May 2017 • EP Magazine | EXCEPTIONAL PARENT

judgement and acceptance for disabled musicians. People are inclined to view them in a different light than body-abled musicians, and tend to judge them based on prejudices, not skills. Can-Do Musos is outspoken about this reality and actively advocates for challenged musicians to be offered the opportunity to be judged based solely on their skills.

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or Can-Do Musos, being naturally skillful is not a necessary requirement to be a good musician. Nobody is born knowing how to master an instrument. Therefore, they believe that everyone can work towards crafting and perfecting their skills. Can-Do Musos makes emphasis on the perseverance people show, rather than inborn qualities. They value the artist’s growth process. They regard it as crucial since it takes time, dedication, and tireless work. In addition, while they may aim for immaculate perfection, they understand

the importance of making mistakes along the way, since they are part of how an artist grows and learns. As Segal states, “A good musician is someone who is patient, willing to work at something, and not afraid of making mistakes because mistakes are part of how you grow, part of learning, and they teach you to move on.” Can-Do Musos plans to continue playing at shows and concerts, touring, and keep providing disabled musicians with opportunities to shine. They want to increase their presence so more people are motivated to do more. They also want to continue speaking to everyone to raise awareness and promote acceptance. However, they want to speak especially to people with disabilities, to foster engagement. They want them to be inspired to follow their hearts and be actively involved in activities that nurture their passion. Can-Do Musos wants to take advantage of the benefits that globalization provides. They want to be known around the world so they can inspire other people with challenges to not give up and find ways to express themselves through their art. Other projects this organization has are working toward offering music clinics, get challenged artists together to play, and gather to talk about life experiences and what it took to get there. They want to use music as a resource to continue putting people together and infuse passion for living. Every member of the community has something valuable to share. By sharing their difficulties, they get feedback from others. In addition, the hard times they may have gone through and the way in which they found their path to success motivate others. Being a disabled musician pursuing a dream is not easy. However, being given the chance to be treated fairly and belong to a community of friends surely eases the ride.• For more information on this non-profit organization and what they do, visit www.candomusos.com. Email: [email protected] ABOUT THE AUTHOR: Katherine Tapia is a journalism student at Passaic County Community College in New Jersey. She is the Editor-in-Chief for the college newspaper, for which she also contributes as a photographer and staff writer. She enjoys spending as time with her family, playing the guitar, reading, and writing.

Giving an individual the ability to express themselves is one of the most powerful things a family can do to help increase their quality of life, as it ultimately helps build their relationships with family and communication partners.

LOOK WHO’S TALKING: There’s no limit to the benefits of having a system that will help a child grow their communication skills.

BREAKING BARRIERS BY GRACE NAH AND BRITTNEY NORRIS

Recently Tobii Dynavox, a leader in assistive technology for communication, expanded their mission for improving the quality of life for even more people through a new device called Indi™. This first-ever direct-to-consumer speech

tablet provides a communication solution for individuals of all ages with speech and language disabilities, including those with autism, Down syndrome, cerebral palsy, Rett syndrome and Intellectual disabilities. EXCEPTIONAL PARENT | EP Magazine • May 2017  37

“We truly believe that everyone deserves and should have access language pathologists and educators identified Snap + Core First as to a voice, especially children as they grow as individuals, each with the easiest to use and navigate, while containing the words they unique personalities,” said Tara Rudnicki, President, Tobii Dynavox were looking for. Indi with Snap + Core First software comes with Microsoft North American Market. “We saw a huge gap in the market, where families in need of augmentative and alternative communication Windows 10 Creators update installed, so users can get started technology were facing daunting roadblocks including cost, eligi- instantly. Snap + Core First meets each communicator wherever bility, and ease-of-access. Indi helps remove these barriers so they they are on their communication journey and evolves with the individual as they grow. It is can focus on what’s important – designed to be the most intubeing able to communicate and itive and engaging symbolengage with the world around based software solution on the them.” market, so you don’t have to With a magnitude of smart worry about spending hours on tablets out on the market today, setup or getting the right conand many different apps and tent in place, as it’s already software that can be used to done for the user, and it’s easy support speech generation, it to customize. can be confusing and overTo assure communication whelming to find the right compartners and users get the most munication solution. Indi is the out of Core First, Tobii Dynavox first purpose built tablet for has also developed Pathways speech output and for Core First, a free, one-of-aAugmentative and Alternative A COMPANION FOR YOUR COMMUNICATION JOURNEY: With a kind companion app that is Communication (AAC). The magnitude of smart tablets on the market today, it can be overwhelming to find the right communication solution. Indi is the packed with expert advice for fully integrated software and first purpose built tablet for speech output and Augmentative and how to meaningfully impact content in Snap + Core First® Alternative Communication. user communication success on Indi has been designed to meet the needs of even the earliest communicator all the way to a and guide them on their journey to literacy and independence. more independent symbol user. If a parent is considering an AAC Pathways is a unique learning blueprint that will enhance partner device for their child, they can confidently approach Indi as a com- communication skills and features an interactive goal setting tool, munication device that can be customized to meet their child’s indi- lesson plans, cheat sheets, and videos to help make the biggest impact on user success. vidual needs.

BETTER COMMUNICATION, FOR A BETTER QUALITY OF LIFE Imagine for a moment not being able to express verbally what you are feeling daily, and how quickly you would become frustrated. Nonverbal individuals face this challenge every day, and this inherent frustration often comes out in their actions. Trying to understand and translate these actions as a parent, teacher, or caregiver can be very challenging. Giving an individual the ability to express themselves is one of the most powerful things a family can do to help increase their quality of life, as it ultimately helps build their relationships with family and communication partners. There’s no limit to the benefits of having a system that will help a child or adult become engaged with family and peers, build literacy skills, and grow their communication skills. Many of the core challenges that users and communication partners typically experience with off-the-shelf software and hardware for AAC have been specifically addressed with the Indi, including software customization, ergonomic design, and overall ease-of-use. Indi provides an in-depth level of content reflecting tools that allow for engagement, encourage growth, and help to build literacy in users. This focus on communication and engagement is also supported by an unprecedented number of activities, books, lesson plans, and step-by-step implementation instructions – all included. In fact, when given the opportunity to explore Indi’s Snap + Core First software against leading competitor apps, 9 out of 10 speech 38 May 2017 • EP Magazine | EXCEPTIONAL PARENT

Snap + Core First meets each communicator wherever they are on their communication journey and evolves with the individual as they grow. It is designed to be the most intuitive and engaging symbol-based software solution on the market. Last but certainly not least, what good is a communication device if the speakers are too quiet to hear the user in real-life environments? Indi has powerful, outward facing, built-in speakers that provide crystal clear speech with exceptionally loud output and a wide range of authentic sounding voices. So, users can be heard anywhere life takes them, like on the playground, at school or even at a ball game. Indi is the collaborative brainchild of Tobii Dynavox’s 25 years of experience in AAC, and is comprised of all the best parts of the company’s previous software and hardware options that have been proven to work well to create the world’s first all-in-one, consumerfocused speech tablet. Visit: www.tobiidynavox.com/indi, or by contacting a local Tobii Dynavox representative.

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here is a Double G camp alumni in Chattanooga that includes a wide range of community leaders, business executives, professional men and women and well-regarded citizens who spent a few summer weeks working as counselors at our camp, which has operated continuously since 1956. The camp was given to Orange Grove Center to use for a couple of weeks in the summer by the Gordon Street family, who developed it for the use of organizations serving individuals with health and developmental issues. One of the most enduring aspects of the camp has been the appreciation of the summer job that young counselors had and how it 40 May 2017 • EP Magazine | EXCEPTIONAL PARENT

has impacted their lives. These teenagers have carried the experience with them as they matured and began careers in leadership in our community. They comprise a group who still have the interests of our individuals foremost in their minds and hearts. What follows is a compelling story by Savage Glascock, who was dragged into a summer job at Double G Camp and the effect is has had on him. We so appreciate the article by Mr. Glascock and are going to use it as a springboard to invite all of the camp alumni to visit us this year as we begin our 60 first year of fun for the summer. – Hal Baker, Former Deputy Director, Orange Grove Center

t my age I’ve come to understand that my attention to the obituary section is required more and more every day. Regardless, I don’t do it enough. For that reason, I’ve learned to shut my mouth when somebody says, “I gotta go to a funeral today” because before, I’d blurt “Who died?” which would be followed by, “Oh man, I’m sorry, I didn’t know that,” which is reasonably interpreted as I don’t really give a crap about you or your dead cousin and that’s not true. I do care. So today I went up and down the obit in Chattanoogan and saw Michael L. Nation. I know of some Nations in this town and shuddered a little as I clicked on his name. I was met by the wonderful smile of what would appear to be a Downs’ syndrome guy who loved to prank people and watch TV. His favorite food was Reese’s Peanut Butter Cups and his special heroes were his Momma and Daddy, Nora and Buddy. I spent 10 full minutes looking at his face. People born with disadvantaged mental capacity pierce my heart. Riled or twisted are words that are too strong for my feeling on this subject, but saying that it gets my attention is not strong enough. I would like to say that I have put in tons of time as a volunteer but I haven’t and that’s just what it is. I don’t deserve to but I want to hug Buddy and Nora, not just for their dedicated sacrifice which is tremendous and something not all normal parents are capable of, but for what they know. Though we’ve never met, I have a fraction of a clue of what

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PHOTO COURTESY DENNIS WILKES

they’re all about and they live in a special place deep in my heart. I guess you could call me fully involved from my chair in front of this monitor. When I was little, my next younger brother and I agreed to be the patients in a game of doctor out in the yard with our neighbor, Janie, who was a Down’s syndrome girl. We were instructed to pull our pants down and bend over the swings so she could take our temperature. We were good patients and we did as instructed and prone that way, Janie inserted pine needles in our behinds in a very clinical and professional way. She pulled them out and looked at them with grave concern and then flapped them in the air and stuck ‘em back in. I’ll never stop laughing at the memory of Battle in a winter coat with his britches around his knees and eyes that took a similarly situated me in and said, “Hmmm, I don’t know about this Brother.” Even then I knew it was funny and I also knew there was no evil of any kind afoot. We loved Janie. Janie’s sibling, Corinne, was buddies with Monica and she was over the top fierce in her protection of her big sister. I remember many times when Monica belly ached about it. “Whatta heck did I do?!” Again, I don’t know what it was like to be Corinne but I have the same kind of fractional notion of her world that I have of the Nations’. I’ll try my best to explain. What little I know about this comes from two weeks in July dur-

SUMMER FUN: “After about an hour at Double G, I relaxed and began to understand why my sisters loved this place so much.”

EXCEPTIONAL PARENT | EP Magazine • May 2017 41

TAKING PART: One of the most enduring aspects of the camp has been the appreciation of the summer job that young counselors had and how it has impacted their lives. ing the summer of 1974 that changed my life. While looking at Michael, I ventured back to those wondrous 14 days. I was 15 years old and didn’t have a summer job and couldn’t drive and I was immature and I knew it. I’d just successfully negotiated puberty and came out OK but was too much of a young chump to do anything about it. Life selfishly sucked for all of these reasons. I did odd jobs and stuff and bided time. Then I found out that my sister, who was off at Orange Grove Summer Camp, called and told Mom that one of the counselors had had a family issue or something and had to go home. With no hesitation at all, Mom volunteered me to fill in. Yep, I would be there the next day. In 1974 it may have been, “What the blue living hell?!” Today, there would be an “F” word involved. By the time I’d been drafted to “retarded” summer camp, I’d forgotten about Janie and I was terrified of “those people.” My older sister had been to GG Summer Camp years before as well and she invited Bobby Owens to our house once. He scared the living crap out of me. He was about 6’9” and loud and menacing. I later learned that he was actu42 May 2017 • EP Magazine | EXCEPTIONAL PARENT

ally none of the above and was much more gut-bustingly hilarious. It was with this mind-set that I sat in the back seat of Dad’s big Pontiac and privately freaked out as he and Mom prattled on about this and that on the way up Highway 27 to Double G Ranch. When I got there, it was late Sunday afternoon and all of the “kids” had already been assigned to their respective cabins and were settling in. Right after Mom and Dad dropped me off at the lodge, it was supper time and somebody rang a bell or something and a mob of gawking, loud, fat, skinny, old and young crazy people came out of the woods and ascended up the lawn toward… me. Dear God. here were six or seven cabins on each side of a big slough in the Tennessee River and the cabins on the north shore were for the boys. At breakfast, lunch and supper, each cabin would assemble in a spot out on the lawn before going in to eat. I was to be in Cabin 2. My co-counselors were Bill Harvey, a gregarious 21ish muscled guy from Atlanta who was the cabin boss, and David

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Dobson. David went to Red Bank and had hair that went all the way down his back. Very much the peacenik, he wore oval John Lennon glasses and he played the electric guitar. Neither Bill nor David needed to introduce me to the campers because most of them vigorously did that themselves. I had no time to be scared anymore because, holy crap, I was mobbed. I met Jackie, Jeff (pronounced jay-yuff), Steven (Eeebbun), Johnny Graaaaayson and several others whose names I’ve sadly forgotten. There were two other Downs guys who didn’t join into the mob thing. They were off to the side and sorta cool. Bill introduced them to me as Mark and Johnny. Sister Monica had already told me about Mark. I think his last name was Casey. There was also Mark Kelsey (I think) who did shocked Christopher Lloyd better than Christopher Lloyd. The man kept you in stitches. Mark Kelsey was in later cabins and I get their last names confused now. Mark Casey (I think) was a Special Olympics medalist in swimming. He was famous and all of the girl campers swooned but he was cool about it. He didn’t brag or anything

because being a stud was his lot in life and, you know, whatta ya gonna do? He put his arm around me and took me in. Forty five to 60 seconds after we first met, he had my back. Johnny was reserved. He wore new clothes and was clean as a whistle. He had shiny red hair that was soft and cut into a helmet shape and his white, freckled skin had the texture of cream cheese. I asked him what his full name was and he faced me with a cocked head and eyes that went off to the side meaning “I told you this already, you dummy” and said “I’m Johnny COOOOleee!” And then he gave me the first of the many, many Michael Nation smiles I received at GG. I’m telling you that puts you into the most wonderful dimension. After about an hour at Double G, I relaxed and began to understand why my sisters loved this place so much. Johnny and I got to be buddies. There was this genuine sweetness about him that drew me in. All of the campers were sweet but he was super sweet. Like a defenseless flower, he was precious and innocent. The boy had no sin and I’m serious when I say I had his back. We’d all cut up in the cabin and all start hollering at each other, or at the moon, or other cabins as they walked by. Whatever, we knew we were the best. Johnny couldn’t pronounce my name but he tried. I was walking down the road to Cabin 2 after supper once and he came rushing out in a panic. Somebody had done something unspeakable inside, probably Eeebun and Jayuff getting ready to duke it out again, and Johnny needed help. He looked down the road and saw me and hollered “CLAAAABBOOOOOSE!” It stuck. All the other campers called me that and soon, the counselors I’d buddied with joined in too. I was delighted. As I said, I replaced a counselor mid-way through that season's summer camp. There were two two-week sessions and I only got to do one of them. Regardless, those two weeks had a profound impact on me. At the end of that session after everybody was packed and started leaving, some of the girl counselors cried. I would be a liar if I said I too didn’t struggle with my emotions. I don’t know if it was a lack of sleep; going from order and boredom to irresistible chaos in a matter of hours; learning that I lived in a bubble before GG as it related to campers and counselors or whatever, telling

Edmund, Jeff, Steven, Jackie, Mark and the two Johnnies I’d see them next year was tough. I would count every day from that July to next June and come hell or high water, I would most certainly be back. I got home not depressed and went back to the odd job boredom thing until it was time to register for high school. I was tall and skinny and the football coach was in the hallway and he said I should play like all of my big brothers did so I signed up. At school and at football practice, I blended in and mixed and mingled in a new environment and I had a pretty dang good time. However, Double G was still on my mind all the time and I talked about it to anybody who’d listen. I stunk at organized football. I was too slow and stupid to be anything but a tackle or an end but I did go both ways and I loved defense. As soon as the ball moved 1/32 of an inch you could slam into the guy in front of you and be in the backfield before anybody could react. The pickle is that you had to be bigger and stronger than the guy in front of you and the guy I practiced with was Peter Bowl - a 6’7” 250 pounder who could stay up with cornerbacks in the 40. Sweet Jesus, no sir. But I did carry the bang off the ball part to PE class for the shirts and skins sand lot football sessions. With no ref, you could cheat like the dickens and get away with it and I became pretty disruptive when the other side had the ball. It got to the point where a starting varsity fullback on the other side stood up in the huddle and screamed, “Come on dammit! Who’s got Claboose?!” Right there on the line in my naked upper half and gasping for air, I laughed and Johnny Cooley flooded my mind. I was who I was in large part because of him and his buds. I decided, then, that I deeply loved “those people.”

sations got serious but most of the time we just kept on laughing about things. I did GG summer camp until I was 19, as did a number of my sibs, so those exploits were in at least two out of five of these late Saturday night pow wow’s. In those conversations, Janie would inevitably come up and Mom always teared up at the observation, many years ago, that Janie first befriended Paul, then the next year it was Tim, then Monica, then Ann, then me, then Battle. Everybody grew up except Janie who just picked up with the next Glascock in line. Before Chris had his turn, Janie had a heart attack and died. Even in my early twenties, I didn’t yet understand death but I knew exactly why Momma cried. So back to now and looking at Michael Nation and wondering about Johnny, I Googled. On February 28, 2015, John McConnell Cooley died at the age of 53. He liked to sing and go on vacation and he spent a lot of time on the putting green. “He extended love, joy and hugs to EVERYONE he met.” I guarantee he did. And now it’s me who struggles as he writes. What a beautiful person! What a beautiful family! How lucky am I to have known him? For various reasons that are mine alone, I have permanently lost religion but that doesn’t mean I don’t talk to and lean on God every day. If you waver, let me suggest you meet a guy like Johnny. He had no stipulations. No holds. No caveats. His was unbridled, simple, warm and unconditional love. There is nothing on this planet more powerful than that. That’s God. That’s why I want to hug Buddy and Nora. That’s why Corinne acted like she did and that’s why, no matter what happens, I will always be happy and believe. • ABOUT THE AUTHOR:

ater, we’d all sit up with Mom on Saturday night in the TV room and, curled up on the couch, she’d have a whole half gallon of ice cream in one arm and a big spoon in the other. We howled at stuff like Dan Aykroyd as Jimmy Carter describing his enemies as “Lusty, zesty men, seething with vital hormonal secretions..” and when SNL was over, the conversation kept going. These were some of the best moments of my life with Mom. Sometimes the conver-

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Savage Glascock is 57 and he lives on Signal Mountain near Chattanooga, Tennessee. He was born the 9th of 12 children who remain very close to this day. Savage has five children of his own who he adores. As a teenager, Savage spent his summers as a counselor at Orange Grove Summer Camp which was held at GG Ranch on Chickamauga Lake. It is from those miraculous memories that he tells this story.

EXCEPTIONAL PARENT | EP Magazine • May 2017 43

THE ANNUAL ISSUE

BOOK EXCERPT

Special Needs THERE’S MORE THAN Parents Need ONEConsider WAY HOME To Life Insurance AWA R E N E S S

BY DONNA LEVIN

Parents of a special needs child will spend a lot of money on care throughout their child’s lifetime. Recurring expenses of any kind are what define a family’s financial lifestyle, so more bills and specific needs means a more expensive lifestyle.

BY JOHN LATONA

Raising Children is Expensive Kids are expensive. (You don’t say…) As a parent of two young children, I know this first-hand. For those of you who have your first child on the way, or are considering having kids in the near future, it’s important to understand just how much raising little ones can cost so you can properly prepare. Well, prepare as much as you can with kids. The U.S. Department of Agriculture estimates it can cost up to $233,610 to raise one child until they reach age 18. This estimate accounts for essentials like housing, food, education 44 May 2017 • EP Magazine | EXCEPTIONAL PARENT

(excluding college) and daycare. But, expenses can vary by age of child, where you live and your lifestyle. What many expecting parents don’t think about is how that figure changes when raising a with a child with special needs. Autism advocacy group Autism Speaks estimates that the average cost of lifetime care for a person with autism is $1.4-million, while a person with autism and an intellectual disability can require up to $2.3-million in lifetime care. In any case, it’s impossible to know exactly how much money it will cost to raise your children. However, there is one way to protect your family and make sure they financially taken care of.

Ask yourself this: if you were no longer around to financially contribute to your household, would your family be okay? For many, the answer is “no” and that can mean a lot of uncertainty for families if their loved ones were to die. But, it doesn’t have to.

Protecting Your Family Financially It’s pretty simple to protect your family financially, and provide a little peace of mind for yourself. With life insurance coverage, in the event of the policyholder’s death, the insurance company gives your beneficiary a payout (called a death benefit) equal to the value of your policy. For example, a very healthy 35-year-old man with a spouse and young children can protect his family with a 30-year, $500,000 term life insurance policy for as little as $38 per month. In exchange for an affordable monthly premium, if he were to pass away during the 30-year time frame, his family would receive a $500,000 payout. Your family can then use this payout to help meet ongoing expenses like the mortgage, child care and even final expenses like a funeral. But each family has a very unique set of needs, and not everyone needs a $500,000 life insurance policy. How much life insurance you need depends on your age, income, residence, gender, family size and debt. You may not even need it… yet.

Coverage For Stay-at-Home Parents If your child has special needs, one of those needs may be more attentive care, possibly in the form of a stay-at-home parent. You may wonder, “Should I still consider a life insurance policy if I don’t technically earn a salary?” Life insurance is especially practical for stay-at-home parents. Consider the responsibilities: 24-hour care of children, assisting with homework and overall education, housekeeping, taking kids to appointments and extracurricular activities… and the list goes on. In fact, Salary.com estimates that all of the work a stay-at-home parent does is worth a salary of $143,102. If you’re at home caring for a child with special needs, that number increases dramatically. Your family may

not need to replace a salary if you were to die, but they will still need to replace all your hard work, and other non-monetary contributions. A life insurance policy can help position your family well to fill the void.

Term Life Insurance vs. Whole Life Insurance

increase or decrease over time. It’s considerably more expensive than term life insurance. While a 30-year, $500,000 term policy would cost a healthy 35-year-old man about $38 per month, a whole life policy could cost that man about $550 per month. While permanent life insurance policies are a good product that can financially protect your family for a lifetime, the premiums can be unaffordable for young parents or cause them to opt for less coverage than they really need.

When researching life insurance, one of the first decisions you’ll usually be faced with is deciding between term and permanent life insurance. While they come at different costs and The Case for Term Life advantages, both help provide financial with Special Needs Parents protection to your family. Parents of a special needs child will Term life insurance tends to be the sim- spend a lot of money on care throughout plest and most affordable option for life their child’s lifetime. Recurring expenses insurance and is often recommended by of any kind are what define a family’s experts. It’s characterized by defined terms financial lifestyle, so more bills and specifof coverage - usuic needs means a ally 10, 15, 20 or more expensive 30 years. If you lifestyle. die during the Term life insurterm length, your ance is particularinsurance compaly valuable in this ny pays an case since it income tax-free financially prodeath benefit in tects loved ones the amount of at an affordable your policy’s monthly cost. value. This way, necesThe right term sary funds can be length for you allocated toward Term life insurance can be and your family current needs and particularly valuable for might be until saving, and parents of a special needs your kids are preparing for financially indefuture ones. child since it financially pendent, signifiHaving life protects loved ones at an cant debts are insurance coveraffordable monthly cost. anticipated to be age for caregivers This way, necessary funds paid off, or is a substantial can be allocated toward you’ve accumustep in safeguardcurrent needs and saving, and lated enough ing your family preparing for future ones. wealth and savand helping them ings. For the parmeet their ongoents of special needs children, this could ing financial needs if you were no longer be a significant term length of 30 years, around. which provides enough time for you to Buying life insurance is now easier and save, build wealth and determine what more affordable than ever. And, trust me, kinds of needs your child will have over the peace of mind that comes with knowthe long term. ing that your spouse and kids are cared for Permanent life insurance comes in a few is worth it. • varieties, but the most common are whole life and universal life. With these policies, ABOUT THE AUTHOR: coverage lasts a lifetime, and there is the John Latona is General Manager of Haven Life. opportunity to build cash value that can EXCEPTIONAL PARENT | EP Magazine • May 2017 45

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YOUR

CHILD’S

IEP

WHAT FAMILIES NEED TO KNOW

BY THE ASSOCIATION FOR SPECIAL CHILDREN & FAMILIES AND LAUREN AGORATUS, M.A.

Families of students with disabilities may need guidance on what should be in their child’s Individualized Education Program (IEP). Even experienced parents can benefit from a summary of what should be included in this important

document. This article discusses the required components of the IEP, the IEP team, and consideration of the Least Restrictive Environment (LRE) for the child. Families may also wish to contact their parent center (see Resources, p.45). EXCEPTIONAL PARENT | EP Magazine • May 2017 47

REQUIRED COMPONENTS OF THE IEP There are several pieces of information that must be included in each student’s IEP. These are: • Present Levels of Academic Achievement and Functional Performance • Measurable annual goals including short term objectives. Some states require short-term objectives or benchmarks for all students with disabilities; the federal law, the Individuals with Disabilities Education Act, or IDEA, only requires them for students who take alternate assessments aligned to alternate achievement standards. Find out your state’s requirements from your parent center. • Special Education and Related Services • Measurement of and Report on Student Progress including participation in state and district-level assessments.

PRESENT LEVELS OF ACADEMIC ACHIEVEMENT AND FUNCTIONAL PERFORMANCE The PLAAFP identifies the student’s areas of strength and their needs. This includes how the disability affects the child’s progress in the curriculum. It must be “current, objective, measurable, and understandable.” Also, student strengths and parental concerns are considered. In both academic and non-academic areas, this forms the basis for the need for accommodations, supports, services, and adjustments or modifications to the curriculum.

MEASURABLE ANNUAL GOALS INCLUDING SHORT TERM OBJECTIVES This section includes both long-term and benchmarks to see what is required for the student to progress in the general curriculum. Please note that the reauthorization of the Individuals with Disabilities Education Act (IDEA) removed the requirement for short-term objectives except for students who participate in alternative assessments. However, some state regulations exceed this requirement and are still in effect. Goals should be long-term plans while objectives are shorter term steps needed to reach the goal. Goals should be based on present levels of performance and be phrased positively, describing an observable and measurable event. 48 May 2017 • EP Magazine | EXCEPTIONAL PARENT

TAKING PART: Special Education and Related Services include extracurricular activities, as well as opportunities for participation with non-disabled peers, so they can make progress in achieving their individualized goals in the curriculum.

SPECIAL EDUCATION AND RELATED SERVICES

MEASUREMENT AND REPORT OF STUDENT PROGRESS

These services state the supports and services that will be provided to the student so they can make progress in achieving their individualized goals in the curriculum. This includes extracurricular activities, as well as opportunities for participation with non-disabled peers. Related services include speech, occupational, and physical therapy, among others (see www.parentcenterhub.org/repository/related-services-module ). For each related service, the IEP will state how many sessions per week, length of the session, and if it is on a group or individual basis. Other related services include transportation, counseling, and school health services. Please note that the IEP team must consider needs for assistive technology, communication supports (especially if the student is deaf or hard of hearing), the possible need for Braille if the student is blind/visually impaired, and functional behavioral assessment and positive behavioral supports and interventions, especially if the child displays challenging behaviors. The team must also consider Extended School Year (ESY) which must be provided if needed to insure access to a free, appropriate, public education (FAPE). For more details on ESY, see www.spanadvocacy.org/con-

Families must be informed of progress at least as often as the district reports on performance for students without disabilities. The reporting must include an update on each IEP goal. The IEP must also include the extent to which the student will participate in state and district-wide assessments, or if the student will instead participate in an alternate assessment (only if the student’s IEP is based on alternate standards) and a statement of modifications or accommodations to be provided in administration of State or district-wide assessments. Other considerations in the IEP include reevaluation (every three years) and transition services, which in most states is age 16 (in NJ it is 14), or as early as necessary. For some students, it is clear that they will need a longer time period to prepare for successful transition. Transition to adult life goes beyond school-to-work and includes independent living, adult healthcare, and consideration of post-secondary education. The IEP team, which includes parents and the youth (him/herself) at age 14/16, drafts the IEP and makes the decisions about services and placement. First consideration should be to the school the child would

tent/extended-school-year-esy-services-helping-children-sustain-maintain-learning.

have attended if s/he didn’t have a disability. This doesn’t mean that preschoolers have to be in the preschool disabled program or that older children have to be in “self-contained” classrooms. Alternate placement only occurs if the IEP cannot be appropriately delivered in the general education setting even with the provision of needed supports and services. For students with challenging behaviors, IEPs should include Positive Behavioral Interventions and Supports.

A NEW DECISION FROM THE SUPREME COURT IMPACTS THE DEVELOPMENT OF IEPS

lenging objectives.” This is in effect immediately! The Court overturned a Tenth Circuit Court of Appeals decision that had held that IEPs must only offer more than “de minimus” benefits. There are other things that parents and students can do to participate in the IEP meeting. These include creating a Positive Student Profile and also IEP meeting checklists (see resources). By preparing ahead, participating fully, and collaborating with the district, families of children with special needs will help develop effective IEPs for the child to attain his or her goals.

ABOUT THE AUTHORS: The recent Supreme Court Case of Endrew F. regarding special education The Association for Special Children and Families (ASCF) is a 38-year-old, not-for-profasked, “Must schools provide a meanit family support organization of parents ingful education in which children who have children with any type of disabilishow significant progress and are ty. Our mission is to empower and support given substantially equal opportunifamilies to raise all their children to reach their ties as typical children, or can they full potential. We are the federally-designated Community Parent Resource Center in provide an education that results in New Jersey. ASCF can be found at just some improvement?” The new http://ascfamily.org/ Contact ASCF at 973decision requires that IEPs must have 728-8744 or by email at [email protected] that are “appropriately ambimail.com. tious” and that districts must be able Lauren Agoratus, M.A. is the parent of a child with multiple disabilities who serves as to offer a “cogent and responsive RISING TO THE CHALLENGE: The Supreme Court held the Coordinator for Family Voices-NJ and as explanation” for their proposed IEPs that every child with an IEP is entitled to “the chance the central/southern coordinator in her that show that each IEP “is reasonably to meet challenging objectives.” state’s Family-to-Family Health Information calculated to enable the child to make Center, both housed at the Statewide progress appropriate in light of his circumstances.” The Court held Parent Advocacy Network (SPAN) at www.spanadvocacy.org. that every child with an IEP is entitled to “the chance to meet chal-

UNIQUE NEEDS : RESOURCES FOR YOUR CHILD’S INDIVIDUALIZED EDUCATION PLAN

Have You Read YouR CHild’s ieP latelY? www.spanadvocacy.org/content/have-you-read-your-childs-iep-lately-ascf

assoCiation foR sPeCial CHildRen and faMilies www.ASCFamily.org

Positive student PRofile www.spanadvocacy.org/sites/default/files/files/START_Positive_Student_Profile_.pdf

PRePaRation foR ieP Meeting (englisH/sPanisH) Parent www.spanadvocacy.org/content/tools-family-educator-collaboration-iep-process Student www.spanadvocacy.org/content/tools-family-educator-collaboration-iep-process-0

PaRent tRaining and infoRMation CenteRs www.parentcenterhub.org/find-your-center

develoPing YouR CHild’s ieP www.parentcenterhub.org/repository/pa12

Positive BeHavioRal inteRventions and suPPoRts www.pbis.org

Information for families www.pbis.org/family can also put Spanish in search box

EXCEPTIONAL PARENT | EP Magazine • May 2017 49

ONE MOM’S STORY OF AUTISM

Planet a BY DIANE MAYER CHRISTIANSEN

It would be so great if someday a child could say to a peer, “I have ASD,” and that peer would already have some basic knowledge of what that meant. That peer would be able to use the words needed to be a friend.

50 May 2017 • EP Magazine | EXCEPTIONAL PARENT

PHOTOS PROVIDED BY DIANE MAYER CHRISTIANSEN

utism is a word that we hear more and more often these days. With the statistics of diagnosis on the rise, more children on the spectrum find themselves in general education classrooms yearly. The idea of autism spectrum leaves many educators and therapists wondering how to best help these children with the varied issues that they exhibit. But with the diagnostic criteria change (DSM-5) in 2013, the spectrum has become less diverse. I think we are entering into an era of better understanding and, with this, my hope is that autism spectrum disorder will become an idea as easy to understand as peanut allergy.

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UNCONDITIONAL: Jackie (left) with his best friend Alexander; If you ask Alexander what it was that made him continue their friendship even in the face of misunderstandings and difficult times, he would tell you one thing: it is the belief that people should be accepted for who they are and not made to fit in to someone else’s standard.

lanet A is a book that I hope gives the reader a glimpse into the world of high functioning autism spectrum. It is my journey, with my son and ASD, from diagnosis through middle school. I have always been a story teller and I believe that the best way to understand autism is by walking through the journey with me and by seeing things from one ASD boy’s perspective. When my son, Jackie, was diagnosed with autism spectrum disorder at the end of first grade, I wasn’t surprised. We had already battled sensory integration issues for years and, deep in the pit of my stomach I knew there was more to come. Still, I didn’t fully understand what ASD was all about. I had heard of Asperger’s and autism but had not been immersed in that culture yet. It was a con-

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fusing time filled with sadness, frustration, and a lot of research. I asked all of the questions that most parents ask upon hearing that their child might not be like typical children: would ASD affect Jackie academically, would he be able to make friends, do I parent him differently, and would I have to give up all of those hopes and dreams that a parent holds for her child? It was a frustrating time and, like many parents of ASD children, I felt isolated and alone. Having my own neurological difference, dyslexia, did make it easier. Struggling through my own issues and coming out on the other side perfectly fine, gave me hope. But it’s been a long road, one that twists and turns and is rarely ever straight. We live in a world that is either riding high on celebration or dropping low in sadness, anger and

EXCEPTIONAL PARENT | EP Magazine • May 2017 51

frustration. There’s rarely anything in lead to anger or anxiety. Black and white chat groups created for parents with ASD between. But it’s a journey and one that I thinking can lead to missed social cues that children. I was amazed at many of the postthen, in turn, can lead to anger, anxiety, or ings. Ten years after Jackie’s diagnosis, and feel needs to be shared. there were so many parents going through “Mom, sometimes I feel like everyone but depression.” The most difficult thing for Jackie has all that Jackie and I had gone through. It was me lives on planet Earth and that it’s great here. Everyone understand everyone else, and been the social issues that he deals with. It’s strange to me. At the time of Jackie’s diagnomost people are happy. But then I live on this tough. He had a hard time making friends, sis, I felt so alone and isolated. I had never other planet, Planet Autism. It’s far away and mainly due to his restricted issues and met another child with ASD, at least not inability to read his peers’ emotions. He hit knowingly. As a mother, there were many maybe not as nice and I’m all alone there.” Planet A is a book that tells it like it is. the jackpot in fifth grade. After many failed times that I felt misunderstood. And here, attempts to find just online, were parents going through the There’s no sugar coat“Inside, these children one person who same thing. Hundreds if not thousands of ing. It’s the journey of would try to under- people, feeling isolated and alone, not fully high functioning are trying to make stand him, he met understanding the diagnosis, asking quesautism, a neurological sense of the world Alexander. They are tions about therapies and the education difference that can be around them, a world now both Freshmen system. This is what first pushed me to elusive on some level. in high school and write Planet A. I feel that if I can share my Many times, when that is difficult to their friendship is still story, maybe those parents won’t feel alone you meet a high funcnavigate, a world that strong. If you ask anymore. Maybe they can get some of the tioning ASD child, you doesn’t always truly Alexander what it was answers they are looking for through my might not even see the that made him con- experiences and even learn to celebrate difference on the suraccept them for tinue their friendship ASD the way that Jackie and I do. face. But inside, these who they are.” The second thing that gave me a nudge to even in the face of children are trying to make sense of the world around them, a misunderstandings and difficult times, he write the book was the lack of knowledge in world that is difficult to navigate, a world would tell you one thing. It is the shared the educational system as well as the comthat doesn’t always truly accept them for belief that people should be accepted for munity around me to truly understand high who they are. There is a depth to ASD. There who they are and not made to fit in to functioning ASD children. There are some are commonalities that run through the someone else’s standard. Alexander has preconceived ideas about autism that still spectrum connecting ASD children together. had to face many of the same scrutinies as exist today. Because Jackie can blend in and because he has Anger issues, anxiety, social awkwardness, Jackie by maintaining learned over time to and restricted interests all overlap to create their friendship, and keep it together durconfusion and frustration. But when it he has been invaluing the school day, comes down to it, they want what most peo- able to me. He has that doesn’t mean been my “spy” within ple want; to be heard and understood. that the ASD is going Once the diagnosis came and my the school system away or “getting betresearch into autism began, I realized that I and he has helped me ter.” Autism will would have to throw all my preconceived understand the reality always be a part of parenting ideas out the window. I thought of social situations who Jackie is, just back to my own childhood and the count- when Jackie’s reality like dyslexia will not accurate. less times I heard the phrase, because I said is always be a part of so. That wouldn’t fly. Every issue would Friendships are a real who I am, but it’s not have to be deconstructed, every decision struggle for ASD chil- Title: Planet a: a Mother’s Memoir all of who he is. It is made would need a reason behind it. I dren. But really, one of autism spectrum disorder easy as an educator couldn’t look at Jackie’s behavior on the or two friends that are Author: diane Mayer Christiansen to forget that the ASD surface and, most of all, I couldn’t react to there when you need is there, especially in it. A melt down in Target couldn’t be them is better than Paperback: 129 pages those moments assumed to be caused by a child not getting twenty who are too Publisher: amazon digital services ISBN: 0692792023 when things are what they wanted. More than likely it was busy to come to your Available on Amazon.com and calm. But the reality about sensory overload. When it comes aide. BarnesandNoble.com is that an ASD child’s “I try to keep reladown to it, parenting with autism in the mix is all about listening, respect, and kindness. tionships with the friends and peers that brain works differently. It interprets inforMy downfall in the beginning was that I had Jackie knows. There are a special handful of mation differently and, when we parent or never been a patient person. You have to kids that I call my Peeps. They fill me in on teach, it’s important that we remember this. “Imagine standing in a small room filled the drama that happens during the school have patience in this arena. “The issues that Jackie deals with are not day, and they are good kids, kids that I’ve with other people, all bumping into you, each voice raised, each voice having a difmutually exclusive but rather form a cycle known since preschool.” Recently, I began to visit various online ferent conversation, sometimes in lanthat feeds off of itself. Sensory overload can 52 May 2017 • EP Magazine | EXCEPTIONAL PARENT

guages you can’t understand. Add in a dead skunk, rancid milk and a wire poking into the back of your neck… This is what every day is like for Jackie.” he truth is that there’s a lot of cool stuff that comes from ASD. Sarcasm, a photographic memory for all things car related, a cheeky sense of humor, and a heart of gold. If I didn’t have dyslexia, I don’t think I would be as creative as I am and I know that all of my struggles have made me a stronger person. Planet A is meant to take the reader on an expedition to planet autism. It’s meant to give information and to educate though the stories of our journey. I want the world to learn to meet ASD children and adults half way in the world. I want to encourage parents, therapists and educators to work together for the good of the child. These connections are invaluable. What happens at school can directly influence what happens at home and the reverse is true. I would like the typical world to see things from the view of autism. And more than

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anything, I would like to begin conversations about ASD in elementary school classrooms. It would be so great if someday a child could say to a peer, “I have ASD,” and that peer would already have some basic knowledge of what that meant. That peer would be able to use the words needed to be a friend. At a recent interview, I was asked what the most difficult thing was for me in dealing with autism. There are difficult times, for sure. There is the reality that parenting an ASD child is much more time consuming. There is the frustration of trying to get Jackie to understand the simplest concepts of the social game. There is the anger that seems to explode from nowhere, but these I can deal with. My answer was this: the most difficult thing about ASD is not the autism itself. It’s the misunderstanding and judging of those around me and their unwillingness to learn. So, in the end, I guess that’s the third reason for writing Planet A. I’m okay with my son’s autism and so is he. But I’m not going to push him to live in a world that is difficult for him to understand. Instead,

I’m going to teach the world how to live on his planet, even if it’s just for a while. • ABOUT THE AUTHOR: Diane Mayer Christiansen has been writing young adult books for 10 years. Her characters center around children with special needs or who feel as if they do not fit it. Planet A is her first nonfiction work. Christiansen was diagnosed with dyslexia in second grade at a time when it was not considered a viable neurological difference. She struggled academically but earned a BA degree in Science at Aurora University. She went on to work in a laboratory setting doing genetic research at both The University of Chicago and Northwestern University. Christiansen switched gears once her son, Jackie, was diagnosed with autism spectrum disorder and began advocating for autism awareness in her community. Today she speaks, along with her son and his friend Alexander, to educators and parents creating awareness and understanding in the face of high functioning autism. She is the co-Founder of redDAY Pledge, a campaign of kindness that can be used in the school system.

YOU THINK SOMETHING MAY BE WRONG. THE ANSWER IS NOT STARING YOU IN THE FACE. Avoiding eye contact is one early sign of autism. Learn the others today at autismspeaks.org/signs. Early diagnosis can make a lifetime of difference.

© 2013 Autism Speaks Inc. “Autism Speaks” and “It’s time to listen” & design are trademarks owned by Autism Speaks Inc. All rights reserved. The child depicted has been diagnosed with an autism spectrum disorder.

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H A L L D O R

B J A R N A S O N

BUILD A BETTER RELATIONSHIP WITH A DISABILITY BY WILLIAM CHIU

called to the Bar again in Vancouver, British Columbia, where he practices currently. Among a number of topics of practice, Halldor specializes in hief Scout Award recipient, gold medal-winning estate planning and disability cases. He’s Paralympian, Terry Fox Humanitarian appeared in BC Supreme Court as an expert Award recipient, community service witness on disability trusts, developed creative award recipient from the BC branch of the “The unique factors solutions for people at risk of being cut off Canadian Bar Association, cerebral palsy and disability advocate — those are just a few of around having a parent from provincial disability assistance, and provided legal advice to numerous charities the accomplishments in the life of Halldor with a disability, in con- which support people with disabilities. Not Bjarnason. If you looked at his resume and only is he a great lawyer, he acts as a true tried to guess which one of his accolades he is junction with the guidambassador of the disability community at most proud of, you may be surprised by his answer because it’s not there. ance of a dutiful, idealis- the same time. Along with being exceptional in his career, A man of many talents, Halldor Bjarnason’s tic and inspired father, he found great success in athletics. He was found his main calling with law, which he has able to earn two medals in the 1988 been practicing ever since 1991. After comhave shaped Elliot into Paralympic Games in Seoul: gold in the pleting high school, Halldor attended universi1500m and silver in the 3000m trike events. ty in Winnipeg where he received an honours the person he is now.” Throughout his education, he competed in degree in political science. He followed this up by electing to go to Queen’s University in Kingston, Ontario, to earn many events and returned to the Paralympic Games in 1992 in his Bachelor of Laws degree. After graduating in 1989, he managed Barcelona. Unsurprisingly, he was inducted into the Manitoba to find an articling position in Toronto’s Bay Street area and, two Sports Hall of Fame for his achievements in Seoul and served on the years later, was called to the Ontario Bar in 1991. In 1993, he was CPISRA Athletes Commission for four years.

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HIS MOST CHERISHED ROLE: DAD

they can do what any other able-bodied person can do. For others, cerebral palsy can be extremely debilitating and include difficulties like speech impediment, problems with chewing or swallowing, and restricted movement and coordination. In Halldor’s case, he has difficulties with movement and speech which has also made some of his duties as a father a bit more difficult. But as you can probably tell, it hasn’t stopped him from doing what he wants to do in life. Halldor explained that having Elliot see his father’s personal, physical challenges at such a young age may have played a role in jumpstarting his thoughts on the social perceptions of disability. It’s a mature and complex topic which often raises ideas about equality and accessibility. Even though Elliot might not fully understand some of the struggles that people with disabilities face, welcoming these ideas at such a young age is a major accomplishment. Halldor may not have intended it, but he believes that he has already instilled the values of equality and compassion within Elliot. Since Elliot was just an infant, he has always wanted to take care of his dad. Halldor recalls a special memory of Elliot when he was six years old during a family outing for Spring break. They visited a breakfast buffet that was self-serve and Halldor asked one of the servers to help carry glasses of juice to their table. With a quick turn and shout, Elliot exclaimed, “Daddy, if you need help, you ask ME! Do you understand?” And just like that Halldor realized that something was going well.

Positive. Influential. Accomplished. These are words that I would use to describe Halldor Bjarnason. But if you ask him he would probably say, “Father.” Since he was a young man, Halldor cherished dreams of becoming a father. Creating, raising, and shaping a child into a loving and contributing member of society was a dream, however, he admitted to struggling with this. He always imagined falling in love and eventually having a child over the years, but he declared an end to his parenting opportunities at age 40. Little did he know that this declaration would be short-lived. You can call it irresponsibility or call it divine intervention, life had other plans for him. When Halldor turned 42, he became a father to a baby boy. His name is Elliot. This unanticipated turn of events was a huge surprise for Halldor. On one hand, he realized one of his greatest dreams, on the other hand, it was completely unexpected. To add to the adversity, Elliot’s mother had no intention of sharing her life with Halldor; they came to an agreement about having dual custody over Elliot. This agreement granted both of them the opportunity to care for Elliot on the basis of half-time. As difficult as this sounds, Halldor reacted the best way anyone could and that was by being there for Elliot every step of the way. He learned to change, bathe, feed, and nurture his son immediately through the help of his own mother. He wanted to do all the things he envisioned when he wanted a child as a young man, ike most things in life, it’s a mixand it was his chance to do it. Considering ture. The unique and exceptionHalldor’s inherent drive as a humanitarial factors around having a paran, his spirit to help others seemed to ent with a disability, in conjunction have been passed down to his son. with the guidance of a dutiful, idealisOver the years, Halldor has been tic and inspired father, have shaped Elliot into involved with many organizations, such as the the person he is now. But it also takes a child Law Society of BCs Equity and Diversity with an open mind and a willingness to learn “Personal achievements and adapt, especially in a scenario such as Committee, Planned Lifetime Advocacy Network and the Cerebral Palsy Association of Elliot’s. He has learned about his father’s chaland community BC. For the latter, he’s spoken at youth groups lenges and for the most part, this knowledge and led discussion panels on aging with a dis- empowerment are par for and awareness seems to have made a very ability – he truly makes an effort to get out positive influence on his well-being. the course for Halldor. into the community and make a positive Personal achievements and community impact on others. empowerment are par for the course for However, none seem That’s why it comes to no surprise when Halldor. However, none seem greater or more greater or more special Halldor tells us that Elliot shows a great special than being a parent and a father. A sinamount of respect and compassion towards gle person was able to change his entire outthan being a parent others, despite his young age. However, anothlook on life and that’s why Halldor’s ultimate er contributing factor to Elliot’s empathetic goal is to be Elliot’s role model — to set a posand a father. ” position might have something to do with his itive example and help him become the best father’s cerebral palsy. person he can be. The most amazing part? Cerebral palsy never For those who might not know, the ways in which cerebral palsy held their relationship back, it only propelled them forward.• affect the body are quite unique from one individual to another. For For more information on Halldor Bjarnason and the Cerebral Palsy some, cerebral palsy presents minimal challenges and, in reality, Association of BC, visit: http://bccerebralpalsy.com

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Speaking out in Support of Sheltered WorkShopS SUBMITTED BY VOR heltered workshops and facility-based day programs are Individuals with intellectual and developmencoming under increasing pressure by recent changes in fedtal disabilities (I/DD) have found the services and eral law and litigation. It’s important to ensure the benefits of these programs are understood so that individuals who cannot supports they rely upon increasingly under- handle and benefit from competitive work are not left unemployed mined by advocacy efforts meant to provide and underserved. more community care options. The question What Sheltered WorkShopS provide arises, however, why does providing more comSheltered Workshops are private non-profit, state, or local government entities that provide employment opportunities for indimunity options come at the expense of closing viduals with disabilities. Persons served in this environment may equally important facility-based options that include those with developmental, physical, and/or mental impairments, ranging from mild to extreme/profoundly affected individuprovide vital care to individuals with severe and als. Sheltered workshops: profound disabilities? • Provide prevocational training, with the goal to prepare for com-

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PHOTOS PROVIDED BY RACHEL EZEKIEL-FISHBEIN

petitive employment for available jobs in the open labor market • Emphasize support of individual needs, based on ability to choose work activities that fit with a person’s skills • Often include additional training in personal care, living skills and developing social skills • Honor the depth and scope of the DD population, recognizing that some individuals may not ever be able to be competitively employed After completing a rehabilitation program, many individuals are able to leave the workshop environment and enter regular employment, if there is a job available for which they qualify. Individuals unable to obtain regular employment because of the severity of their impairments or unavailability of jobs may remain in the workshop environment. Individuals performing services are paid a fraction of, or up to minimum wage, depending on their capacity to perform the services. 1 While work is the main focus at facility-based programs, sheltered workshops also provide opportunities for people with disabilities to challenge themselves, further their self-esteem and self-confidence, develop friendships and engage in their communities. Because of the supports and protections in place, those with more severe/profound impairments can find success in meaningful and productive activities that may not otherwise be possible for them in mainstream businesses. Sheltered workshops often include services emphasizing personal care, living skills, developing social skills, etc. Individuals with disabilities too severe for sheltered work rely on day programs for community integration and meaningful and constructive activities during the workday. These programs are often facility-based and provide opportunities for building self-esteem, confidence, social skills and friendships important for both mental and physical health.

Specialized SupportS For those individuals with intellectual and developmental disabilities (I/DD) who enter the competitive workforce, specialized supports are often required to ensure a successful work experience. Proponents of “supported employment” contend that as long as the appropriate supports are in place, the goal of “real” employment should be achievable for everyone with a disability. While this is a laudable goal, society must recognize the pressures that exist in business that are driven by economic issues, deadlines and competition in the market. For many with I/DD, these realities interfere with their ability to maintain competitive jobs long-term and for a full eight-hour workday.

eliminating Special minimum/commenSurate WageS Provisions for Special Minimum Wage Certificates, under the Department of Labor, Fair Labor Standards Act (FLSA) of 1938, Section 14(c), help people with disabilities obtain jobs in a competitive workforce. Employers who receive a certificate from the U.S. Department of Labor’s (DOL) Wage and Hour Division (WHD) have the ability to pay special minimum wages (below the federal minimum wage) to employees who have disabilities, if the disability affects job performance.2 This provision of the FLSA is often inaccurately referred to as offering a “Sub-Minimum Wage” in what appears to be an intentionally derogatory manner to dampen public support for the program. There have been formal attempts to eliminate Special Minimum Wage Certificates altogether. For example, H.R. 831 was

a bill intended to phase-out special wage certificates under the Fair Labor Standards Act. Efforts to end the provision of special minimum wage certificates could adversely affect individuals with significant and profound disabilities if they are unable to produce goods at the same rate as less disabled or non-disabled workers. Liability issues, and the additional costs involved with providing necessary specialized supports in the work environment can also become disincentives to hire individuals with the most significant needs. Offering a special minimum wage incentivizes and enables employers to provide employment to individuals with disabilities who may not otherwise be given the opportunity to work.

Why you Should Be concerned Many of the taxpayer-funded government agencies and nonprofit organizations that disparage Intermediate Care Facilities (ICF’s) as ”isolating” use the same criteria to stigmatize sheltered workshops. They deliberately disregard the importance of sheltered workshop—and facility-based day programs--to the portion of the I/DD population who depend upon them. These organizations, often taxpayer funded entities, have advocated and litigated against sheltered workshops in the same manner in which they have attacked ICF’s, despite the lack of employment opportunities for individuals with I/DD, and the fact that few employers have an incentive or the ability to hire individuals with profound disabilities. Integration into a non-disabled workplace is not the primary goal for all individuals with I/DD, and should not be given precedence over safety, productivity, or a sense of community among one’s peers. The continued, and many believe intentional, misinterpretation of the Supreme Court’s Olmstead decision permeates numerous policies, including the Work Innovation and Opportunities Act (WIOA), which increases regulation on employers who pay a commensurate wage. WIOA prohibits employers from paying a subminimum wage to workers age 24 or younger unless the employer has “reviewed, verified, and maintained copies of documentation” that show that the youth has completed pre-employment transition services, vocational rehabilitation and career counseling. Adults over age 24 are also affected by WIOA. Employers cannot provide a commensurate wage to any adult unless the employee undergoes career counseling every six months during their first year of employment and on a yearly basis going forward. The employer must also provide “information about self-advocacy, self-determination, and peer mentoring training opportunities” to employees on an annual basis. 3 The fear for many is that increased regulation will make it harder and more costly for employers to provide sheltered work opporEXCEPTIONAL PARENT | EP Magazine • May 2017 59

tunities, thereby limiting options for individuals with severe and profound needs who are unable to successfully manage the transition to competitive work. While we all want individuals with I/DD to maximize their potential, a compassionate society also recognizes that the maximum will look different for each individual. In its recently released 13-page Guidance document on Employment,4 the Department of Justice (DOJ) uses the word “segregated” or “segregation” no less than 40 times when referring to sheltered workshops. At the same time, it picks and chooses selective passages from Olmstead, deliberately ignoring those passages that address the needs of those individuals with disabilities who rely upon higher levels of care. In doing so, the DOJ marginalizes our most vulnerable citizens and even puts them at risk by ignoring warnings ABOUT VOR:

VOR’s mission is to advocate for high quality care and human rights for all people with intellectual and developmental disabilities. VOR promises to empower individuals with developmental disabilities to make and protect quality of life choices. Founded in 1983, VOR is a national 501(c)(3) organization governed by a volunteer board of directors and funded solely by dues and donations. VOR receives no government support. Throughout its history, VOR has been the only national organization to advocate for a full range of quality residential options and services, including own home, family home, community-based service options, and licensed facilities. VOR supports the expansion of quality community-based service options; VOR opposes the elimination of specialized facility-based (institutional) option. Learn more at http://vor.net

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that permeate Olmstead’s majority and concurring opinions. DOJ’s selective interpretation of the Supreme Court Olmstead Decision amounts to an unwarranted attack on the portion of the I/DD population with the most complex need, in that it eliminates the settings that best support them. The DOJ refuses to acknowledge that individual choice is paramount in both residential and employment options, and thereby violates the civil and human rights of vulnerable citizens by refusing to meet the need for a wide range of programs to support that choice. People with significant disabilities deemed not qualified to work would be forced to stay at home, receive no wages, and be denied the tangible and intangible benefits of work.

concluSion VOR believes in providing more, not fewer, work options and accommodations to address the diverse needs of individuals with I/DD. Expanding and encouraging competitive work opportunities for individuals that can benefit from them should be pursued, while vital existing services that are clearly meeting needs are retained. There is a place for both integrated and facility-based employment services, as we as a society provide for the full continuum of care for individuals with disabilities as called for in the U.S. Supreme Court Olmstead decision.•

References 1. Social Security, Program Operations Manual System, RS 02101.270 https://secure.ssa.gov/apps10/poms.nsf/lnx/0302101270 2. Goodwill Industries, “Employment of People with Disabilities through FLSA Section 14 (c) http://www.goodwill.org/wp-content/uploads/2013/06/Goodwill-14c-Fair-Wages-Position-Paper.pdf 3. U.S. Department of Labor Wage and Hour Division Fact Sheet #39H https://www.dol.gov/whd/regs/compliance/whdfs39h.pdf 4. DOJ Statement on Application of Integration Mandate of Title II of the ADA and Olmstead to State and Local Governments’ Employment Service System for Individuals with Disabilities https://www.ada.gov/olmstead/olmstead_guidance_employment.pdf 5. CMS Fact Sheet: Summary of Key Provisions of 1915(c) HCBS Waivers Final Rule https://www.medicaid.gov/medicaid/hcbs/downloads/1915c-fact-sheet.pdf 6. CMS, HCBS Final Regulations 42 CFR Part 441: Questions & Answers Regarding HCBS Settings https://www.medicaid.gov/medicaid/hcbs/downloads/q-and-a-hcb-settings.pd

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Special Olympics Arkansas is working across mainstream policies, statewide programming and health provider training programs to normalize the inclusiveness of people with intellectual disabilities in Arkansas.

CHANGING THE LANDSCAPE OF HEALTH FOR PEOPLE WITH INTELLECTUAL DISABILITIES SUBMITTED BY SPECIAL OLYMPICS he room quiets as Nathan McClain addresses a team of his peers about the importance of health and increasing awareness about fitness and sport at an April training in British Columbia. McClain, a 22-year-old from Little Rock, Arkansas, is among a growing group of self-advocates sharing the message about inclusive health for people with intellectual disabilities, or equitable access to quality health care, education, and services throughout communities. McClain is an accomplished athlete who trains up to five times a week and focuses on fitness. He brought home two silver medals in swimming from the 2015 Special Olympics World Games held in Los Angeles, California, and represented Team Arkansas at the 2014 Special Olympics USA Games, winning gold in the 50M swim.

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He recently traveled to Special Olympics headquarters in Washington, DC, to receive official training on how to serve as a health ambassador. McClain’s passion is evident when he speaks about health and was displayed during his message to other athlete leaders interested in advocating for inclusive health in British Columbia. McClain knows that in the workplace, without health, one cannot be productive. In school, without health, one cannot achieve. In sport, without health, one cannot perform. He is working to increase the understanding and awareness of the public about the barriers that people with intellectual disabilities face when seeking quality health care and education. McClain is not alone in his efforts. He is part of a dedicated Special Olympics Arkansas group that is working to change the landscape of health for people with intellectual disabilities in the state.

PHOTOS PROVIDED BY SPECIAL OLYMPICS/STEPHANIE CORKETT

pecial Olympics Arkansas is building long-lasting and farreaching partnerships with organizations across the state that are focused on health. Special Olympics Arkansas is working across mainstream policies, statewide programming and health provider training programs to normalize the inclusiveness of people with intellectual disabilities in Arkansas. And it’s working. Special Olympics Arkansas sought to collaborate with missionaligned organizations - frequently at the policy level - that often traditionally missed those with intellectual disabilities. Special Olympics Arkansas has successfully engaged them around the mutually-beneficial nature of these partnerships. For the past several years, Special Olympics has activated and educated organizations such as the Arkansas Department of Health, the Arkansas Coalition for Obesity Prevention, the Department of Oral Heath, the Arkansas Children’s Hospital, the Department of Human Services, Arkansas Blue Cross and Blue Shield, Unity Health, Delta Dental, and the University of Arkansas Medical School, with thousands of people with intellectual disabilities benefitting.

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nered with the Arkansas Hunger Relief Alliance to offer adapted classes as an additional wellness opportunity for athletes. One weakness discovered in the national material was that the actual cookbooks were not tailored to people with intellectual disabilities. However, Share Our Strength is now working closely with Special Olympics Arkansas, with the hope that Share Our Strength commits to a nationwide partnership that starts with an easy-read cookbook. Special Olympics Arkansas has secured an additional partner and grant funding to help create an adapted set of materials to use locally and to provide to Share Our Strength for national consideration. Special Olympics Arkansas also expanded its partnership with the Arkansas Department of Education when Special Olympics Arkansas became an official member of the Healthy Classroom Initiative through the School Health Department. Through the first part of 2016, Special Olympics trained 430 education professionals – including school health, physical education, administrators, and wellness committee members – at 31 events. These trainings led to a health and wellness curriculum adopted by several schools.

HEALTHY BODIES AND MINDS: (Opposite page and above left) Special Olympics athletes learn about preparing healthy meals at a Cooking Matters session. (Above right) Special Olympics athlete Nathan McClain tells an audience “I feel better when I am fit.” Inclusive efforts initially undertaken by these organizations locally are now starting to be embraced throughout the state, and the effects of some efforts may soon be felt nationwide. Camie Powell, the director of marketing and corporate relations for Special Olympics Arkansas, has been leading its health efforts since 2013. “Athletes strive for their personal best through competition; to get there that involves their diet, fitness and a total approach to wellness. Special Olympics Athletes are no different. We are proud to smash stereotypes in Arkansas by showing our communities our athletes can focus on health and in fact when empowered they will exceed expectations,” she shares.

ARKANSAS HUNGER RELIEF ALLIANCE One partnership that gained momentum last year alone that has the possibility of far-reaching impacts involved the Arkansas Hunger Relief Alliance, which teaches cooking classes using a national Cooking Matters curriculum created by Share Our Strength. Over the past two years, Special Olympics Arkansas part-

A total of 25,000 students received health education in 2016 (15,000 SO athletes ages eight and up and 10,000 Unified Young Athletes ages 2-7). Special Olympics was named the official professional development curriculum for inclusion of sport and health with the Department of Education for 2017. Powell shares, “2016 was our groundbreaking year. Currently we are the 2017 curriculum supported by the Arkansas Department of Education. This means that we are promoted as the course to take for educators, and we are recommended by the Arkansas Department of Education. Our appointment as the official training for 2017 through the Department of Education’s curriculum department gives us more credence, and we believe this will lead to more implementation of this inclusive curriculum. We use a six-prong approach to ensure this is quality implementation (training, Frameworks infusion, Unified Champion Schools, Every Student Succeeds Act, wellness committee, and partner development). Moving forward, we hope to have additional influence through our work on a committee that is redesigning the Health and Physical EXCEPTIONAL PARENT | EP Magazine • May 2017 63

Education frameworks and we are also peti- Special Olympics International, along with tioning hard to be the nonacademic piece of its local chapters like Special Olympics Arkansas, is working to educate possible Arkansas’ Every Student Succeeds plan.” partners about the Arkansas is just health disparities one of more than 80 people with intelSpecial Olympics lectual disabilities locations throughexperience and colout the world laborating with already paving the partners to ensure way for inclusive services are reachhealth through a ing people with focus on year-round intellectual disabilihealth and wellness ties. made possible by Despite severe global, regional and need and higher local partnerships. health risks, people So far, more than with intellectual dis170 organizations GOING FOR THE GOLD: Nathan McClain abilities are often have partnered with swimming the butterfly stroke; He denied health servSpecial Olympics represented Team Arkansas at the 2014 ices. There is often a in these efforts glob- Special Olympics USA Games, winning gold in the 50M swim. misconception that ally. Special Olympics International is in a the poor health of people with intellectual unique position to help catalyze partners to disabilities is due to their disability. ensure services are reaching people with Research has shown that it is in fact a result intellectual disabilities. As the largest global of a breakdown in health education, health public health organization dedicated to promotion, and health care. Special serving people with intellectual disabilities, Olympics global health program, made pos-

64 May 2017 • EP Magazine | EXCEPTIONAL PARENT

sible by the Golisano Foundation, offers health services and information to athletes in need. In all, more than 1.7 million free health examinations have been conducted in 134 countries through Special Olympics Healthy Athletes. The research continues to point to the need for a systematic approach to inclusive health that Special Olympics is striving for across the world. “Being healthy made me a better athlete. I was able to train so much more, which allowed me to achieve more than I imagined. I feel better when I am fit. Special Olympics competitions are my focus. I know I can’t reach the next competition without a healthy mind and body. We need others partners to get involved with Special Olympics Health so all athletes have the support and opportunities that I have to achieve greatness” says McClain.• Are you a part of an organization that could align with Special Olympics? Please connect with your local Special Olympics chapter or with Heather Harmer, the regional health manager for Special Olympics North America, at [email protected]

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

MILITARY LIFE

66 EARLY INTERVENTION FROM A TO Z 67 EIGHT TIPS SERVICE MEMBERS CAN USE TO MANAGE STRESS 68 HEALTHY ACTIVE CHILDREN AND ACADEMIC ACHIEVEMENT PUZZLES & CAMO

69 THIS IS NOT A DRILL By Shelly Huhtanen

MILITARY LIFE

EARLY INTERVENTION FROM A TO Z DEPARTMENT OF DEFENSE DIRECTORY ON EARLY INTERVENTION, SPECIAL EDUCATION AND RELATED SERVICES IS A VALUABLE RESOURCE Whether your family is moving to Ansbach, Germany, or Camp Zama, Japan, you’ll want to know everything you can about overseas schools, especially if you have children with special educational needs. Fortunately, you can find all the information you need, from A to Z. The Department of Defense Directory on Early Intervention, Special Education and Related Services in OCONUS Communities explains the levels of support in overseas communities for families of military dependents with special educational needs. Use the OCONUS directory to: • Review the location of programs in each military community outside the contiguous U.S. • Identify the support level offered by programs in these communities • Find out which communities offer specialized services – including early intervention and special education – for children with more severe or low-incidence disabilities The directory helps medical and educational assignment coordinators identify those military communities in OCONUS locations with preestablished programs or services for children with special needs.

HOW IS THE OCONUS DIRECTORY ORGANIZED?

EXTRA

Chart 1 identifies special education resources by country and communities in each country. It lists community schools, levels of special education resources, and notes availability of services at specific schools. Chart 2 lists schools by community and identifies military installation type, the military component that provides Educational and Developmental Intervention Services, and EDIS clinic locations. Chart 3 lists communities with specialized Level 3 services.

WHAT ELSE SHOULD I KNOW ABOUT THE OCONUS DIRECTORY? Military

medical

departments

AT YOUR SERVICE: Review the location of programs in each military community outside the contiguous U.S. and find out which communities offer specialized services for children with more severe or low-incidence disabilities.

and

66 May 2017 • EP Magazine | EXCEPTIONAL PARENT

Explore the Department of Defense Directory on Early Intervention, Special Education and Related Services in OCONUS Communities now. Check out the Military OneSource fact sheet Moving With a Family Member With Special Needs.

Department of Defense Dependents Schools use the directory to recommend sponsor assignments for children with disabilities to overseas locations. Only specially trained professionals should match children’s needs with resources in communities outside the continental U.S. The directory does not identify preestablished programs or services for special medical needs. Being assigned to a location listed in the directory doesn’t guarantee intervention services or participation in special education programs. You’re sure to have plenty of questions about your big move. Explore the directory to connect with the services your family needs. (Military OneSource)

H U.S. MILITARY

EIGHT

TIPS SERVICE MEMBERS CAN USE TO MANAGE STRESS

Stress is an interesting

animal. A little stress isn’t always bad: it can be an effective motivator, and the adrenaline that stress creates can help improve both mental and physical performance. But too much stress can negatively affect your performance on duty, your relationships, and your physical and mental health. Fortunately, there are many ways to control and reduce stress and increase health and wellness. You can learn and apply stress management techniques to help limit your stress and stay more relaxed in your military and home life.

MANAGE YOUR STRESS • Take good care of yourself. Get enough sleep and exercise, eat healthfully and be sure to drink water throughout the day. • Build a positive outlook and try to maintain a “can-do” attitude. Focus your energy on things that make you feel good. • Laugh often. Laughter can help you to stay upbeat. Watch a funny movie, share jokes with friends and look for the humor in everyday life. • Learn how to relax. Take a few deep breaths and envision yourself in a peaceful place. You can also take a walk, listen to soothing music or read a good book.

PRESSURE RELEASE: Laughter can help you to stay upbeat. Watch a funny movie, share jokes with friends and look for the humor in everyday life. • Make time for activities you enjoy. Schedule “me time.” Do something fun. • Learn to recognize when you're stressed. Excessive stress can cause symptoms like neck or back pain, headaches, upset stomach, trouble sleeping and fatigue. Try to recognize these signals before they become overwhelming. • Focus on the things you can control. When you feel anxious, ask yourself, “Is there anything I can do to change this situation?” If the answer is no, try to let it go. • Simplify your life. Get organized at

home. File paperwork, clean out the kids’ rooms and get rid of anything you don’t need or use. Learn to say “no” to obligations and activities that will overload your schedule. If your efforts to control your stress don't seem to be working, you might find it helpful to talk to a professional. You can get free confidential, non-medical counseling from Military OneSource via telephone at 800-342-9647. Military and family life counselors are also available through your installation Military and Family Support Center. (Military OneSource)

UNLOCK THE SAVINGS AND NUTRITION INSIDE YOUR COMMISSARY t’s dinnertime again and you have two choices: expensive nutrition and a sink full of dirty dishes, or drive-thru convenience that leaves your car smelling like French fries for a week. Step away from the grease-soaked paper bag, and visit the Defense Commissary Agency's website. You’ll find tools there to whip up something that’s equal parts tasty, healthy and convenient. If your stomach’s already growling because you read the words “French fries,” there’s no time to waste. Get the details on how your commissary will change the way you shop and eat. Healthy shopping doesn’t have to be expensive, and healthy recipes don’t have to be complicated, with ingredients you can’t pronounce. Win the imaginary groceryshopping trophy by making a quick stop at the Defense

I

Commissary Agency’s website before your next commissary grocery run. On the site, you can: • Become a self-made health expert with the latest nutrition findings in the Healthy Living section. • Snag simple, healthy recipes for your meal planning or lastminute meal. • Make your shopping list with the My Shopping List tool. • Take a virtual walk through your commissary's Savings Aisle to see what's on sale for the week. • Mark your calendar for upcoming sales and events. And while you’re cruising your commissary’s aisle, remember that a military family can’t live on bread alone just because bread’s on sale. Get the right balance of groceries in your cart with nutrition tips from ChooseMyPlate.gov EXCEPTIONAL PARENT | EP Magazine • May 2017 67

U.S. MILITARY H

HEALTHY, ACTIVE CHILDREN & ACADEMIC ACHIEVEMENT e all want our children to enjoy learning, make good grades and achieve success. Nutrition and physical activity are linked to academic achievement, so making sure your children are healthy and active will assist them in reaching their academic goals. A healthy lifestyle can help improve a child's: • Attention span • Thinking ability • Memory Make healthy eating and physical activity part of your child's daily life. Reach out to Military OneSource online, or call 800342-9647, to set up a specialty consultation for health and wellness coaching.

W

NUTRITION When children skip breakfast, bad things can happen. Hungry kids tend to have shorter attention spans and have difficulty with problem solving, math skills and memory recall, according to studies from the Journal of School Health. Children need a nutritional breakfast of whole grains, fiber and protein. They also need snacks throughout the day that are high in protein and low in sugar, to boost their ability to listen, process and remember what they are learning. It's important to give your kids healthy eating options at home, and to talk to them about making healthy food choices when they're at school.

Visit these websites to get tips about healthy food choices: • ChooseMyPlate.gov, for the Nutrition Education Series that you can post at home. • Defense Commissary Agency, for recipes, cooking tips and more. • Eating Healthy, for tips on making healthy choices.

PHYSICAL ACTIVITY According to the Centers for Disease Control and Prevention, children need at least 60 minutes of physical activity every day. Physical activity can include school recess periods, hiking, playing sports, or walking to and from school. If none of those things appeal to you and your kids, try a having daily dance party at home. Check out the following resources for ideas about how to keep your children physically active: • Morale, Welfare and Recreation, to find local activities on your installation • Installation youth centers, to locate a safe, kid-oriented environment • Boys and Girls Club of America, Military Partnership, for community participation opportunities. • Let's Move, for strategies to encourage a healthy, active lifestyle. Social and academic success can increase if you make healthy eating and physical activity part of your children's daily life. (Military OneSource)

RISE AND SHINE: When children skip breakfast, bad things can happen. Hungry kids tend to have shorter attention spans and have difficulty with problem solving, math skills and memory recall, according to studies from the Journal of School Health.

68 May 2017 • EP MAGAZINE | EXCEPTIONAL PARENT

PUZZLES & CAMO

SHELLY HUHTANEN

This Is Not a Drill Lon Anderson with TSA, “Thank you.” People like you are the reason families like us keep trying. You showed us compassion and for that, we are forever grateful.

“ W h e re a re yo u ? ”

big hug. There was no way dealing with a meltdown we could have gotten Lon Anderson, the TSA representative, before even reaching the through TSA without him. was calling us to check on our status. We Delta terminal. He had kept his promise and After we got our boarding had just parked and were unloading the ensured we got through. car. This was the first time Broden had passes and bags checked, We started to walk away flown since he was a baby and Hayden Lon walked us past the endand I turned around to say was around three years old. After hearing less crowd waiting to get thank you again, but he was Lon’s voice, Mark and I were glad we took through the TSA line. Mark already gone. I had lost sight the time to call “TSA Cares” a few days and I grabbed Hayden and of him due to large crowds before our flight. Lon told us to meet him Broden and kept our eyes at one of the front doors near the Delta on Lon as he moved in and out of the of people trying to get through TSA so counter and he would help us get crowd. Eventually we came up on a TSA they could find their gate. We grabbed the agent who was securing the line. Lon back of Broden’s backpack and dragged through TSA. We grabbed our bags and hustled over came up to him and said, “I need to get him down the escalator to the train and to the airport. Mark and I gasped when this family through.” The TSA agent then eventually found our gate. As Mark and I were gloating to one anoththe doors opened. The main area er on how we got through was filled with people. The lines unscathed, Broden kept us humwere so long we didn’t even know ble by sticking chewing gum in where they started or where they his hair. ended. Mark ran to a Delta repreAs the plane started to board, I sentative, but he was not very proceeded to rip gum out of his helpful and extremely overhair as he screamed, “Sorry!! whelmed due to so many people Ahhh!” A few parents chuckled as trying to get on flights. There were I threw the gum and some of massive storms the day before that Broden’s hair in the trash. One shut down travel so people were parent yelled over to me, “Of forced to stay the night in Atlanta course something like that would in the hopes of getting a flight out happen before boarding a flight!” that day. The same day we were FRIENDLY SKIES: This was the first time Broden had flown since he was a baby. There was no way we could I smiled. If he only knew. trying to leave. I kept thinking, of have gotten through TSA without Lon Anderson. all the days to try and fly it was the looked confused initially, but once he day after an apocalyptic storm. his year has been a year of firsts Mark turned around and saw a TSA realized Lon was dead set on getting us for Broden. Mark and I are proud agent by the door on the phone. “Lon! through, he moved to the side to let us to add flying in an airplane to that We’re the Huhtanen Family! Can you help proceed. list. Lon Anderson with TSA, “Thank Lon took the time to explain to us what you.” People like you are the reason famus?” Lon ran over and looked concerned, “Have you checked your bags yet?” Mark was going to happen, who could keep ilies like us keep trying. You showed us and I looked at him and rolled our eyes. their shoes on, and how to set Broden’s compassion and for that, we are forever “Of course not! We’re still trying to figure medical formula aside for extra screen- grateful. • out where the lines end!” Lon didn’t miss ing. Mark went through screening and a beat. He told us to follow him and led to then called for Broden to walk towards PUZZLES & CAMO a kiosk to check in our bags. I don’t know him. Hayden followed and then I stayed Shelley Huhtanen is an Army wife with two how many people we cut off in line, but behind to be extensively searched due to children, one with autism, whose husband is at that point I didn’t care. Broden was having the medical formula. Lon stayed currently stationed at Fort Benning, GA. She is an starting to get irritated with all the people with our family the entire time. When I autism advocate and currently the parent liaison and the noise. I knew that if we didn’t get met up with them after being screened, for the Academy for Exceptional Learners. out of this crowd, we could possibly be Mark shook Lon’s hand and I gave him a

T

EXCEPTIONAL PARENT | EP Magazine • May 2017 69

PRODUCTS AND SERVICES AQUATICS

(New Hampshire)

EQUIPMENT

(New Hampshire)

CROTCHED MOUNTAIN SCHOOL

Lifts:

CROTCHED MOUNTAIN SCHOOL 1 Verney Drive Greenfield, NH 03047 P: 603-547-3311 F: 603-547-6212 E: [email protected] www.crotchedmountain.org

1 Verney Drive Greenfield, NH 03047 P: 603-547-3311 F: 603-547-6212 E: [email protected] www.crotchedmountain.org (North Carolina)

ASSISTIVE TECHNOLOGY

TASKS GALORE PUBLISHING INC.

(New Hampshire)

4909 Old Elizabeth Road Raleigh, NC 27816-5414 P: 866-788-2757 F: 919-789-8256 E: [email protected] www.tasksgalore.com Offering parents and professionals practical resources to help students with developmental disabilities become more independent.

CROTCHED MOUNTAIN SCHOOL 1 Verney Drive Greenfield, NH 03047 P: 603-547-3311 F: 603-547-6212 E: [email protected] www.crotchedmountain.org

AUGMENTATIVE COMMUNICATIONS (New Hampshire)

CROTCHED MOUNTAIN SCHOOL 1 Verney Drive Greenfield, NH 03047 P: 603-547-3311 F: 603-547-6212 E: [email protected] www.crotchedmountain.org (Pennsylvania)

TOBII DYNAVOX 2100 Wharton Street, Suite 400 Pittsburgh, PA 15203 P: 412-671-1715 E: [email protected] www.tobiidynavox.com The Tobii Dynavox Indi with Snap™ + Core First® Software is the world’s first all-in-one speech tablet for symbol-based communicators

AUTISM (Massachusetts)

(Pennsylvania)

VALLEY FORGE EDUCATIONAL SERVICES 1777 North Valley Road Malvern, PA 19355 P: 610-296-6725 F: 610-296-6530 E: [email protected] www.vfes.net Provides services and programs for children and young adults, 2–21 years of age, with special needs — The Luma Center for Development and Learning, Summer Matters and The Vanguard School.

70 May 2017 • EP Magazine | EXCEPTIONAL PARENT

LIFT AIDS, INC. 1500 Westpark Way Euless, TX 76040 P: 817-835-0035 F: 817-835-0096 E: [email protected] www.lift-aids.com Therapeutic: (Minnesota)

WHISPERGLIDE SWING CO. 10051 Kerry Court North Hugo, MN 55038 P: 800-944-7737 F: 651-351-9661 E: [email protected] www.whisperglide.com (Pennsylvania)

VALLEY FORGE EDUCATIONAL SERVICES 1777 North Valley Road Malvern, PA 19355 P: 610-296-6725 F: 610-296-6530 E: [email protected] www.vfes.net Provides services and programs for children and young adults, 2–21 years of age, with special needs — The Luma Center for Development and Learning, Summer Matters and The Vanguard School.

EDUCATION (New Hampshire)

CROTCHED MOUNTAIN SCHOOL 1 Verney Drive Greenfield, NH 03047 P: 603-547-3311 F: 603-547-6212 E: [email protected] www.crotchedmountain.org

EVERGREEN CENTER 345 Fortune Boulevard Milford, MA 01757 P: 508-478-2631 F: 508-634-3251 E: [email protected] www.evergreenctr.org The Evergreen Center provides living and learning environments for persons with autism and intellectual and developmental disabilities including physical disabilities, behavior disorders and complex health needs.

(Texas)

(Pennsylvania)

HMS SCHOOL FOR CHILDREN WITH CEREBRAL PALSY 4400 Baltimore Avenue Philadelphia, PA 19104 P: 215-222-2566 F: 215-222-1889 www.hmsschool.com E: [email protected] A residential school for students up to age 21, who have severe, multiple disabilities.

Services: (Massachusetts)

EVERGREEN CENTER 345 Fortune Boulevard Milford, MA 01757 P: 508-478-2631 F: 508-634-3251 E: [email protected] www.evergreenctr.org The Evergreen Center provides living and learning environments for persons with autism and intellectual and developmental disabilities including physical disabilities, behavior disorders and complex health needs.

PRODUCTS AND SERVICES HOSPITALS/REHAB CENTERS

SCHOOLS/CAMPS/RESIDENCES

21, who have severe, multiple disabilities.

(New Hampshire)

(Massachusetts)

CROTCHED MOUNTAIN SCHOOL

EVERGREEN CENTER

VALLEY FORGE EDUCATIONAL SERVICES

1 Verney Drive Greenfield, NH 03047 P: 603-547-3311 F: 603-547-6212 E: [email protected] www.crotchedmountain.org

345 Fortune Boulevard Milford, MA 01757 P: 508-478-2631 F: 508-634-3251 E: [email protected] www.evergreenctr.org The Evergreen Center provides living and learning environments for persons with autism and intellectual and developmental disabilities including physical disabilities, behavior disorders and complex health needs.

MOBILITY (Florida)

NMEDA 3327 West Bearss Avenue Tampa, FL 33618 P: 866-948-8341 P: 813-264-2697 F: 813-962-8970 www.nmeda.com NMEDA is a non-profit trade association of mobility equipment manufacturers, dealers, driver rehabilitation specialists, and other professionals dedicated to improving the lives of people with disabilities and assisting with driving independence using wheelchair accessible vehicles.

(Virginia)

NEW ENGLAND VILLAGE 664 School Street Pembroke, MA 02359 P: 781-293-5461 F: 781-294-8385 E: [email protected] www.newenglandvillage.org Empowering adults with I/DD to realize their potential and pursue their dreams through innovative programs and community living.

NON-PROFIT

(Missouri)

(New Hampshire)

YOUTH RALLY COMMITTEE

CROTCHED MOUNTAIN SCHOOL

949 Chestnut Oak Drive (Mailing Only) St. Charles, MO 63303 P: 510-769-9295 F: 877-712-4759 E: [email protected] www.youthrally.org Six day camp held at college campuses in July promoting independence, for 11-17 year olds affected by bowel/bladder disorder.

1 Verney Drive Greenfield, NH 03047 P: 603-547-3311 F: 603-547-6212 E: [email protected] www.crotchedmountain.org

RESIDENTIAL FACILITY

1777 North Valley Road Malvern, PA 19355 P: 610-296-6725 F: 610-296-6530 E: [email protected] www.vfes.net Provides services and programs for children and young adults, 2–21 years of age, with special needs — The Luma Center for Development and Learning, Summer Matters and The Vanguard School.

(Massachusetts)

RIVERBROOK RESIDENCE, INC.

(New Hampshire)

4 Ice Glen Road Stockbridge, MA 01262 P: 413-298-4926 F: 413-298-5166 E: [email protected] www.riverbrook.org Adult home for women with developmental disabilities within a state of the art integrated community setting.

CROTCHED MOUNTAIN SCHOOL 1 Verney Drive Greenfield, NH 03047 P: 603-547-3311 F: 603-547-6212 E: [email protected] www.crotchedmountain.org (Pennsylvania)

HMS SCHOOL FOR CHILDREN WITH CEREBRAL PALSY 4400 Baltimore Avenue Philadelphia, PA 19104 P: 215-222-2566 F: 215-222-1889 www.hmsschool.com E: [email protected] A residential school for students up to age

OAKLAND SCHOOL 128 Oakland Farm Way Troy, VA 22974 P: 434-293-9059 F: 435-296-8930 E: [email protected] www.oaklandschool.net Oakland School is a day and boarding school for students with learning differences, who are ages 6-13 upon admission. (Washington, DC)

NATIONAL ASSOCIATION OF PRIVATE SPECIAL EDUCATION CENTERS 601 Pennsylvania Avenue, NW, Suite 900 – South Building Washington, DC 20004 P: 202-434-8225 F: 202-434-8224 E: [email protected] /[email protected] www.napsec.org Private Nonprofit association created in 1971 to represent private specialized education programs serving individuals with disabilities.

SPEECH AND LANGUAGE (Pennsylvania)

TOBII DYNAVOX 2100 Wharton Street, Suite 400 Pittsburgh, PA 15203 P: 412-671-1715 E: [email protected] www.tobiidynavox.com The Tobii Dynavox Indi with Snap™ + Core First® Software is the world’s first all-in-one speech tablet for symbol-based communicators

EXCEPTIONAL PARENT | EP Magazine • May 2017 71

PRODUCTS AND SERVICES THERAPY

(New Hampshire)

Creative Arts:

CROTCHED MOUNTAIN SCHOOL

(New Hampshire)

CROTCHED MOUNTAIN SCHOOL 1 Verney Drive Greenfield, NH 03047 P: 603-547-3311 F: 603-547-6212 E: [email protected] www.crotchedmountain.org Occupational: (Massachusetts)

EQUIPMENT SHOP, INC. PO Box 33 Bedford, MA 01730 P: 781-275-7681 F: 781-275-4094 E: [email protected] www.equipmentshop.com www.beaconrehab.com Specializing in providing Tricycle Foot Pedal Attachments and equipment for oral-motor therapy including Flexi Cut Cups and Maroon Spoons. (New Hampshire)

CROTCHED MOUNTAIN SCHOOL 1 Verney Drive Greenfield, NH 03047 P: 603-547-3311 F: 603-547-6212 E: [email protected] www.crotchedmountain.org Physical: (New Hampshire)

1 Verney Drive Greenfield, NH 03047 P: 603-547-3311 F: 603-547-6212 E: [email protected] www.crotchedmountain.org

VAN/VAN CONVERSION DEALERS Lifts: (Texas)

LIFT AIDS, INC. 1500 Westpark Way Euless, TX 76040 P: 817-835-0035 F: 817-835-0096 E: [email protected] www.lift-aids.com (Florida)

NMEDA 3327 West Bearss Avenue Tampa, FL 33618 P: 866-948-8341 P: 813-264-2697 F: 813-962-8970 www.nmeda.com NMEDA is a non-profit trade association of mobility equipment manufacturers, dealers, driver rehabilitation specialists, and other professionals dedicated to improving the lives of people with disabilities and assisting with driving independence using wheelchair accessible vehicles.

A PROVEN WINNER! ADVERTISE IN EP MAGAZINE Exceptional Parent is an awardwinning publishing and communications company that has provided practical advice, emotional support and the most up-to-date educational information for families of children and adults with disabilities and special healthcare for over 45 years. Advertising in EP Magazine is an effective form of communicating both brand and product-specific messages to our targeted and motivated audience. EP’s specific demographic guarantees that you reach your intended customers.

CROTCHED MOUNTAIN SCHOOL 1 Verney Drive Greenfield, NH 03047 P: 603-547-3311 F: 603-547-6212 E: [email protected] www.crotchedmountain.org Speech: (Massachusetts)

EQUIPMENT SHOP, INC. PO Box 33 Bedford, MA 01730 P: 781-275-7681 F: 781-275-4094 E: [email protected] www.equipmentshop.com www.beaconrehab.com Specializing in providing Tricycle Foot Pedal Attachments and equipment for oral-motor therapy including Flexi Cut Cups and Maroon Spoons.

72 May 2017 • EP Magazine | EXCEPTIONAL PARENT

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