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EXCEPTIONAL PARENT MAGAZINE APRIL 2019 $7.95
AN EP EXCLUSIVE:
A SUCCESS STORY of EARLY INTERVENTION
TRANSITIONING YOUR CHILD with AUTISM to ADULTHOOD ALSO INSIDE:
ACCEPTANCE IS A START – NOT A FINISH
Autism Awareness N ACADEM CA Y RI
ME D ICI N
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N T I S RY T
GETTING TO WORK:
MAKING DISABILITY BENEFITS WORK for YOU
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1 in 4 U.S. adults – an estimated 61.4 million people – reported a special need or Disability.* Through Voya’s distinctive Voya Cares program, you’ll get access to holistic financial education and retirement planning solutions geared to families with disabilities and special needs to help you move closer to the future you envision. For more information, visit voyacares.com
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Products and services offered through the Voya Financial® family of companies. *Okoro CA, Hollis ND, Cyrus AC, Griffin-Blake S. Prevalence of Disabilities and Health Care Access by Disability Status and Type Among Adults — United States, 2016. MMWR Morb Mortal Wkly Rep 2018;67:882–887. DOI: http://dx.doi.org/10.15585/mmwr.mm6732a3
APRIL 2019 VOLUME 49 ISSUE 4
By Michael John Carley
34 MAKE DISABILITY BENEFITS WORK FOR YOU By J. Alexandra Baig, MBA, CFP®
38 AUTISM: FROM AWARENESS TO ACCEPTANCE By Lauren Agoratus, M.A.
SAB I L I T I E
30 “ACCEPTANCE” IS A START – NOT A FINISH
By Jackie Schwabe
•D E V E
By Krista Digregorio and Ernst Vanbergeijk, PH.D., M.S.W.
42 BUT... SHE SAID ”BIRD” A SUCCESS STORY OF INTERVENTION
26 HELPING YOUR CHILD WITH AUTISM TRANSITION INTO ADULTHOOD, THE WORLD OF WORK, AND INDEPENDENCE
By Kimberlee Rutan McCafferty
By Deanna Picon
40 A CALL FOR COMPASSION
22 SIX WAYS FOR THE PUBLIC TO SUPPORT SPECIAL NEEDS PARENTS
M E N TA L
PART II OF II
46 A ROAD RICH WITH WISDOM: INSIGHTS FROM A PARENT, ADVOCATE AND FOUNDER By Kim Humphrey and Sean Luechtefeld
FEATURES 48 THE REEMERGENCE OF THE VACCINE DEBATE By Sophia Chrisco
51 SEEING THE BIG PICTURE Voya Cares
52 NEW JERSEY LAW SEEKS TO RAISE AWARENESS, ACCEPTANCE AND UNDERSTANDING
54 THE USE OF VISUAL LANGUAGE WITH THE CHILD WHO HAS A COCHLEAR IMPLANT
By J. Freeman King, ED.D
56 ATHLETES LEADING THE WAY FOR HEALTH By Lynn Erickson and Renee Dease
By Lauren Agoratus, M.A. ON OUR COVER “6 Ways for the Public to Support Special Needs Parents” and Autism Awareness coverage begins on p 22.
47 ep-magazine.com | EP Magazine • April 2019 1
APRIL 2019 VOLUME 49 ISSUE 4
DEPARTMENTS ANCORA IMPARO
4 SHADES OF GREEN By Rick Rader, MD
6 WHAT’S HAPPENING 11 NEW PRODUCTS HEARTSIGHT
By Christina Llanes Mabalot
h w Nem n! olu C hR W
16 EARLY INTERVENTION: MY PERSONAL JOURNEY
CO N T
AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE AND DENTISTRY
18 UNDERSTANDING IS A LOT LIKE SEX. IT’S GOT A PURPOSE, BUT THAT’S NOT WHY PEOPLE DO IT NORMALLY By H. Barry Waldman, DDS, MPH, PHD, Steven P. Perlman, DDS, MSCD, DHL (HON) and Jeffrey Seiver, DDS
6 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
64 PRODUCTS & SERVICES
MILITARY SECTION MILITARY LIFE
60 10 QUESTIONS TO ASK CHILD CARE PROVIDERS FOR YOUR CHILD WITH SPECIAL NEEDS
60 10 QUESTIONS TO ASK CHILD CARE PROVIDERS FOR YOUR CHILD WITH SPECIAL NEEDS
61 SUPPORT FOR FAMILIES: THE ESSENTIALS
61 SUPPORT FOR FAMILIES: THE ESSENTIALS
PUZZLES & CAMO
62 CHANGING TOGETHER By Shelly Huhtanen
PUZZLES & CAMO
62 CHANGING TOGETHER By Shelly Huhtanen
EP FOR FREE! THE MISSION OF EXCEPTIONAL PARENT MAGAZINE IS TO GATHER AND SHARE INFORMATION AS TOOLS FOR POSITIVE CHANGE FOR THE SPECIAL NEEDS COMMUNITY. To subscribe to the free eMagazine or for the print magazine ($95 per year) go to: www.ep-magazine.com
2 April 2019 • EP Magazine | ep-magazine.com
The contents of EP magazine’s Military Section are not necessarily the official views of, or endorsed by, the United States Government, the Department of Defense, or the Department of the Army. The appearance of advertising adjacent to the Military Section does not constitute endorsement by the United States Government, the Department of Defense, or the Department of the Army of the products or services advertised.
Information and Support for the Special Needs Community
VOLUME 49 ISSUE 4
Editor-In-Chief • Rick Rader, MD • [email protected]
Managing Editor • Vanessa B. Ira • [email protected]
Publisher • Vice President of Business Development & Sales Accounting Art Direction & Design Information Technology Expert
• Faye Simon • Lois Keegan • Leverett Cooper • Ron Peterson
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Exceptional Parent (ISSN 0046-9157) is published monthly 11 times per year plus the special January Annual Resource Guide by TCA EP World, LLC, dba Exceptional Parent Magazine, 1360 Clifton Avenue, Ste. 327, Clifton, NJ 07012 Internet address: www.ep-magazine.com. All rights reserved. Copyright ©2018 by TCA EP World, LLC. Exceptional Parent™ is a registered trademark of TCA EP World, LLC Postmaster: Please send address changes to: Exceptional Parent,1360 Clifton Avenue, Ste. 327, Clifton, NJ 07012. Any applicable periodical postage paid at Johnstown, PA and additional mailing offices (USPS 557-810). Basic annual subscription for EP Digital is free. Limited edition print subscription $95.00. Subscriber Service: Direct all inquiries & address changes to: Exceptional Parent, 1360 Clifton Avenue, Ste. 327, Clifton, NJ 07012 08758. Customer Service/New Orders: E-mail: [email protected]
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EP EDITORIAL ADVISORY BOARD Steven P. Perlman, DDS, MScD, DHL (Hon) Clinical Prof., Boston University, School of Dentistry, Boston, MA
Saadi Ghatan, MD Site Chair, Neurosurgery, Mount Sinai West, Mount Sinai St. Luke’s,New York, NY
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
Jean F. Campbell Principal, JF Campbell Consultants; Founding Board Member, Professional Patient Advocates in Life Sciences (PPALS)
Matthew Holder, MD CEO, Lee Specialty Clinic, Louisville, KY Global Medical Advisor for Special Olympics International
Henry G. Chambers, MD Director, Southern California Cerebral Palsy Center at Rady Children's Hospital-San Diego, Co-director 360 Sports Medicine Program
Gary Liguori, Ph.D Fellow of the American College of Sports Medicine (ACSM), Dean, Collegeof Health Sciences, University of Rhode Island
Dr. David Fray Associate Professor, Department of General Practice and Dental Public Health, University of Texas School of Dentistry, Houston, TX
Patricia E. McGoldrick, CPNP Pediatric Neurology & Epilepsy, Associate Director, Developmental Disability Center, Roosevelt Hospital, NY
Steven M. Wolf, MD Associate Professor of Neurology and Director of Pediatric Epilepsy, affiliated with Mount Sinai Beth Israel, Mount Sinai St. Luke’s, Mount Sinai West, New York, NY
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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
Stephen B. Sulkes, MD Pediatrician, University of Rochester Medical Center, Rochester, NY
N T I S RY T
Kyle Hauth Executive Director, Orange Grove Center, Chattanooga, TN
ME D ICI N
Mark L. Batshaw, MD Prof. and Chairman, Dept. of Pediatrics, The George Washington University Medical Center, Washington, DC
Allen Friedland, MD Pediatrician and Internist Pediatric to Adult care Advisor, Wilmington, DE
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
ep-magazine.com | EP Magazine • April 2019 3
RICK RADER, MD
Shades of Green While Exceptional Parents did not have their own Green Book, they certainly had a way of finding out (from other parents) where they were welcome and where they were respected. Being welcomed and respected has always been the two basic needs on every exceptional parent’s wish list.
A few months ago, a parent of an individual we support at our agency (The Orange Grove Center) brought me a gift in appreciation for some advocating I did on his behalf. It was a gold plastic replica of an Oscar standing on a base with the words, HOLLYWOOD BEST DOCTOR. While it was a lovely gesture and greatly appreciated, it was a little chintzy and I put it in our library next to a statue of the Empire State Building with a gorilla on top of the spire. The tribute to King Kong was purchased by me from a souvenir store in Times Square the day before I left The Big Apple for Chattanooga nearly 25 years ago. I thought I had to bring something that would remind me of Manhattan, and it has been in our library ever since. The only casualty has been the left arm of King Kong, the result of a behavioral incident several years ago. We didn’t file a “destruction of property incident report” since describing the damage as “loss of a gorilla’s left arm” would have required too long an explanation and it would have resulted in the state 4 April 2019 • EP Magazine | ep-magazine.com
sending down three investigators. So we proudly display the “Oscar” and the Empire State Building souvenir next to each other. The real Oscar (officially known as the Academy Award of Merit) is made of gold-plated bronze on a black metal base. It is thirteen-and-a-half inches tall, weighs eight-and-a-half pounds and “depicts a knight rendered in Art Deco style holding a crusader’s sword, standing on a reel of film with five spokes. The five spokes represent the original branches of the Academy: Actors, Writers, Directors, Producers, and Technicians. The model for the statuette is said to be Mexican actor Emilio “El Indio” Fernandez. The first Oscar was awarded in 1929. Several weeks ago, a real Oscar was awarded to the producers of the film Green Book, for the prestigious Best Picture of the year. So in essence both Producer Jim Burke
and I have statues of Emilio Fernandez displayed in our offices Green Book deserved to win several Oscars. Everything about it was top notch. The film was based on a true story and it revolved around the 1962 tour in the Deep South by a Jamaican-American jazz pianist (Don Shirley) and his driver and bodyguard, an Italian-American named Tony Vallelonga. The actual Green Book was a guidebook created in the 1930s that listed the names and locations of hotels, motels, restaurants and public rest rooms that would accept African-Americans during the time of widespread racial segregation and sunset towns. Sunset towns were communities that kept out blacks (or sometimes ChineseAmericans, Jewish-Americans, etc.) by force, law, or custom. They were also called “sundown towns.” There were literally thousands of them and were not restricted
PHOTO COURTESY H. ARMSTRONG ROBERTS/CREATIVE COMMONS
WHAT’S HAPPENING to the Deep South, they were found from they didn’t need it. Likewise, from Maine to California, there were thousands of clinics, Maine to California. It was not that blacks were simply denied schools, camps, neighborhoods, houses of access and service into these places; they worship, amusement parks, restaurants, often found themselves in physical danger, dental offices, barbers, hotels and entertainthus, the need for a guidebook that served ment venues that frowned upon having people with disabilities darken their door. as a lighthouse for safe entry. Amy Goodman, writing in Democracy They were thought of as being both burNow, describes the movie: “It details the vio- densome and unattractive. Both were seen as bad for business lence, the insults, so they didn’t want the discrimination to encourage their black travelers patronage. While faced on the road, Exceptional as well as the pride Parents did not and sense of comhave their own munity they felt in Green Book, they the safe spaces certainly had a they created way of finding out around the coun(from other partry, in the form of ents) where they restaurants, hotels were welcome and and vacation where they were retreats.” respected. Being The book was welcomed and created by Victor respected has Hugo Green, a always been the black postal worktwo basic needs on er living in Harlem. every exceptional Green was inspired parent’s wish list. to compile the Since 1971, parbook from a Jewish HAVE BOOK, WILL TRAVEL: The Green Book ents of children friend who wrote a listed hotels, motels, restaurants and with exceptional guide for Jews who public rest rooms that would accept needs considered wanted to spend African-Americans during the time of Exceptional Parent time in the Catskill widespread racial segregation. If it wasn’t magazine as the Mountains (outside in the Green Book, black travelers knew equivalent of the of New York City) in better than to stop there for lunch or for Green Book. the summer to an overnight stay. While the long-fought disability rights escape from the heat. Jews, like blacks, were denied access to hotels and restaurants. The movement has now opened doors and official name was the “Negro Motorist hearts to the special needs community, we owe a special thanks to those early pioneers Green-Book”. The book had 9,500 listings over the period that welcomed “exceptional families.” Every of 30-some odd years. The cover of the 1949 single one of them deserves a golden statedition stated, “Carry your Green Book with uette of a knight holding a crusader’s sword.• you – you may need it.” This wasn’t simply a marketing slogan, it was the truth. ANCORA IMPARO You didn’t need a guide that listed where In his 87th year, the artist Michelangelo blacks were not welcome. If it wasn’t in the (1475 -1564) is believed to have said “Ancora Green Book, black travelers knew better imparo” (I am still learning). Hence, the name for my monthly observations and comments. than to stop there for lunch or for an — Rick Rader, MD, Editor-in-Chief, EP Magazine overnight stay. Director, Morton J. Kent Habilitation Center Exceptional Parents never published Orange Grove Center, Chattanooga, TN their version of the Green Book; not that
IMAGE COURTESY WIKIMEDIA COMMONS
CONNECT AND DISCOVER Join EP’s Facebook Community
EP’s revamped Facebook page welcomes you to share stories, discover resources and connect with the special needs community. Parents and families with members with special needs benefit greatly from meaningful interaction with peers facing the same challenges and joys. Facebook has provided the EP readership community with a convenient and effective platform to communicate, ask questions, promote events and share special moments. Connect, Share and Discover with EP www.facebook.com/exceptionalparentmag
Visitors can access the latest news and articles from recent issues of EP Magazine, and provide feedback and insight of their own. EP’s Facebook page an open community group for parents, grandparents, family and friends of people with special needs family members. It’s an ideal place for both parents and professionals to share information and resources. Parents, teachers, academics and professionals that are willing to help each other by sharing knowledge and resources are a vital part of the EP community. Like us today! ep-magazine.com | EP Magazine • April 2019 5
SEVEN HONORED FOR CHAMPIONING GLOBAL HEALTH WORK WITH GOLISANO GLOBAL HEALTH LEADERSHIP AWARDS
The honorees were announced at the Special Olympics World Games in Abu Dhabi. he Golisano Foundation and Special Olympics honored, last March, seven healthcare organizations and professionals who are on the frontlines of bringing essential and often unprecedented health care services to the most marginalized people on earth, those with intellectual disabilities (ID). The Golisano Global Health Leadership Award, named for philanthropist and Paychex founder Tom Golisano, was presented to seven recipients by Golisano Foundation Executive Director Ann Costello at a ceremony today in Abu Dhabi at the 2019 Special Olympics World Games. The Golisano Global Health Leadership Award was established in 2016 to recognize the progress being made around the world to increase access to essential health care for people with ID. It is Special Olympics’ highest honor for health partners. The honorees are health champions in their countries. Their extraordinary efforts are fulfilling the goals, values, mission, and targets of Special Olympics’ global health strategy, made possible by the Golisano Foundation. This award recognizes individual leaders and organizations that promote inclusive health systems, wellness, and fitness for people with ID.
6 April 2019 • EP Magazine | ep-magazine.com
WORLD STAGE: 2019 Golisano Global Health Leadership Award Honorees: (Seated from left to right) Luc Marks, Ann Costello, Nyasha Derera, Kamal Bani-Hani, Ashok Dhoble; (Standing from left to right) Adnon Villamayor, Ying Feng, Javier Vasquez, Manoj Shah, Jayna Shah, Peter Seidenberg, Renee Manfredi, Drew Boshell, Reena Kumar “As we honor the 2019 Golisano Global Health Leadership Award honorees we recognize the impressive work health care professionals can achieve to care for a marginalized population,” shared Ann Costello, Executive Director of the Golisano Foundation. “We applaud these individuals and organizations and challenge others to make the same strides for people with ID.” “These recipients have demonstrated their commitment to ensuring inclusive health for people with intellectual disabilities is possible in every corner of the world,” said Mary Davis, Special Olympics CEO. “They are making strides to help Special Olympics reach our global target of facilitating access to health for 11 million people with ID by 2020.” The seven global finalists were selected from a record 105 recipients of the 2018 regional Golisano Health Leadership Awards by a Special Olympics International cross-departmental team of Special Olympics athlete leaders, Healthy Athletes Global Clinical Advisors and a representative from the Golisano Foundation.
PHOTO COURTESY GOLISANO FOUNDATION
WHAT’S HAPPENING Kenya: Lions Sight First Eye Hospital, for making significant impact in follow-up care for Special Olympics Kenya athletes. In the past five years, the hospital has donated more than 1,000 eye glasses and conducted more than 15 surgeries, free of charge for Special Olympics Kenya’s athletes.
India: Dr. Ashok Dhoble, the Honorary Secretary General for the Indian Dental Association (IDA), for collaborating with Special Olympics and the IDA to sign an MOU committing to year-round access to oral healthcare to Bharat athletes and caregivers.
China: Hua Dong Hospital, for forming a medical volunteer team to support Special Olympics Healthy Athletes screenings and establish a year-round Special Olympics Health Support Project team. The Health Project team has conducted Healthy Athletes events in 17 cities and completed more than 12,000 screenings.
Belgium: Belgian Dentists Collaboration, for forming a “National Collaboration Platform” for dentists in Belgium to achieve better oral health outcomes for people with intellectual disabilities. Led by dentists Dr. Luc Marks and Dr. Michel De Decker, both Special Smiles Clinical Directors, through a national collaboration, four major Belgian Universities partnered with all dental professional organizations to improve the oral health of people with ID.
Paraguay: Dr. Dorisel Ferreira, the Director of the Third Health Region of the Ministry of Public Health and Social Welfare, for recruiting staff from the Ministry of Public Health and Social Welfare to volunteer at Healthy Athletes, as well as getting the Ministry of Health to provide the equipment necessary for Healthy Athletes events. Dr. Ferreira has created a network for follow-up care, making it possible for athletes and their families to get medical care, dental care, immunizations, and specialty care at local hospitals.
Jordan: Professor Kamal Bani-Hani, President of Hashemite University, for collaborating with Special Olympics Jordan on health, education, and sports. Hani-Bani works with students in sport science, special education, and medicine to volunteer
PHOTOS COURTESY GOLISANO FOUNDATION
within Special Olympics Jordan’s health and fitness programs and at competitions and events. This partnership has raised awareness among a new generation of professionals on the importance of community inclusion for people with ID.
USA: Dr. Peter Seidenberg, a family and sports medicine physician at Penn State Sports Medicine College, for evaluating, strengthening, and contributing to the global roll-out of MedFest, and working with Special Olympics Pennsylvania to create a directory of providers who will accept athletes in need of follow-up care. Dr. Seidenberg is currently developing Continuing Medical Education lectures to train healthcare providers how to deliver quality care to people with ID and work to reduce health disparities. The Golisano Foundation is making Special Olympics Health work possible globally, and has invested $37 million to create and expand Special Olympics Healthy Communities throughout the world. Golisano’s gift is the largest received by Special Olympics, and is also the largest single gift ever given by Tom Golisano and his Foundation.
REVO Slim-Line Daily Living Wheelchair The Narrow Wheelchair Designed To Help You Easily Fit Through Every Door And Tight Space At a slim 21.5 inches, In Your the REVO Slim-Line goes where most Home chairs can't. Easily zip down skinny hallways. Effortlessly maneuver around tight corners. Glide around your house with ease. And never have to switch between different chairs in your home again.
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ep-magazine.com | EP Magazine • April 2019 7
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 person depicted is a model and is used for illustrative purposes only.
UNDERSTANDING THE FAMILY CONTEXT: AUTISM’S EFFECT ON PARENTS AND SIBLINGS The reverberations of autism spectrum disorders among parents and siblings can be complex. Parents may grapple with the impact of their child's initial diagnosis, wrestle with the tension between their professional ambitions and family obligations, and labor to maintain a healthy union with their partners. Brothers and sisters may be given less attention, asked to assume a more adult role than they feel ready for, or strive for meaningful connection and communication with their sibling and parents.
• Involving and providing support for siblings • Integrating grandparents and other extended family in care and treatment • Understanding a family's culture • Identifying and developing effective coping strategies • Building a strong rapport with parents and family • Guiding parents in the treatment of autism And many more, including key takeaways for assisting families in managing feelings of grief and guilt, navigating support options, treatment resources, and related financial concerns, and calibrating the division of labor in the home. The book has ready-to-implement resources and approaches for effective professional care in school and clinical settings. Autism and the Family supplies all the foundations necessary for professionals to understand the full impact of ASD on the child, siblings, and parents; and cultivate an empathic, supportive approach to treatment for the entire family..•
lthough the energy of clinicians, teachers, and other professionals working with individuals with autism spectrum disorder is often focused intensively on the child who is diagnosed, the practitioner can also be an invaluable resource for the child's family. Drawing upon cliniTitle: Autism and the Family: cal research and first- Understanding and Supporting hand family inter- Parents and Siblings views, this book helps Author: Kate E. Fiske clinicians understand the experiences of Paperback: 336 pages parents and siblings Publisher: W. W. Norton & Company of a child with ASD Publication Date: February 7, 2018 ISBN-13: 978-0393710557 from the time of diagAvailable at amazon.com and nosis through adult- barnesandnoble.com hood. It provides clear recommendations for sensitive, informed professional support. Step-by-step in each chapter, Fiske elucidates such vital subjects as: • Understanding the experience of diagnosis • Recognizing patterns of parent stress over time • Appreciating and navigating the effects of ASD on relationships between parents
IMAGE COURTESY W.W. NORTON & COMPANY
ep-magazine.com | EP Magazine • April 2019 9
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!
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NEW PR DUCTS
SCENTED CALMING PUTTY
MINITALK The MiniTalk™ is an augmentative and alternative communication device designed for individuals with communication or speech disabilities. The MiniTalk’s icon-based language system includes more than 4,400 adult-appropriate graphic icons and animations that represent 9,000-plus words. Through this pocket-sized, tabletstyle device, users can express their thoughts and feelings by creating customized icons and phrases. Portable and lightweight, the MiniTalk™ comes with a protective carrying case, and users can interact with the device using multiple
input methods, including touchscreen or stylus. MiniTalk™ provides access to the FastTalk page (frequently used messages), a specialized news source, and whiteboard. It also offers emailing capabilities, multiple voice options, a built-in camera and photo viewer, and unlimited support and training.
This Scented Putty Calm is a sensory integration therapy tool designed for individuals who exhibit anxiety or nervousness to strengthen hands and encourage fine motor work. Infused with pure essential lavender oil to induce calm and regulation, the silicone putty can help reduce anxiety and add fun to heavy hand work. Users can stretch, mold, and pull the putty to ease transitions and soothe before test-taking or high-stress activities. Use alcohol to easily remove from clothing. Safety-tested and CPSIA compliant. Made of silicone. Free of gluten, casein, latex and soy. FUN AND FUNCTION PO Box 11 Merion Station, PA 19066 Phone: 800-231-6329 Fax: 866-343-6863
LINGRAPHICA 103 Carnegie Center Suite 204 Princeton, NJ 08540 Phone: 888-274-2742 Fax: 609-275-1311 Web: www.lingraphica.com Email: [email protected]
STAY N PLACE BALL The Stay N Place Ball is a ball for individuals with autism or other disabilities that can be used for traditional balance therapy, as a chair, or to encourage proprioceptive responses when lifted or passed around. Great for traditional balance therapy as a chair, or for encouraging proprioceptive responses when lifted or passed around. It is a 60 centimeter therapy ball that is filled with 1400 grams
(3 pounds) of sand to weigh it down. The sand means that it won’t roll away when the user is finished using it. ABILITATIONS/SPORTIME INTERNATIONAL PO Box 922668 Norcross, GA 30010 Phone: 800-850-8602 Fax: 800-845-1535 or 770-263-0897 Web: www.abilitations.com Email: [email protected]
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. ep-magazine.com | EP Magazine • April 2019 11
NEW PR DUCTS
MOLYMOD SHAPES OF MOLECULES MODEL The Molymod Shapes of Molecules Model is an educational aid designed for students with learning disabilities to teach them how to create eight models that feature examples of coordination numbers 1 to 6, including linear hydrogen chloride, linear beryllium chloride, bent water, trigonal planar, pyramidal ammonia, tetrahedral methane, trigonal bipyramidal and octahedral sulfur hexafluoride. Molymod Shapes of Molecules Model is packed in a four compartment box with instructions and short-link-remover tool. Lone pairs are represented by spherical or pear-shaped
GRIPABLES UTENSILS Gripables Utensils are eating utensils designed for individuals with upper extremity disabilities. The set of three includes a fork, knife and spoon with an easy-to-use grip and notched plastic handle. Utensils allow maximum user control with minimum effort and give independence at mealtime. Dishwasher safe for convenience. Colors include pink, red, blue and green. SCHOOL SPECIALTY W6316 Design Drive Greenville, WI 54942 Phone: 888- 388-3224 Fax: 800-513-2467 Web: www.schoolspecialty.com Email: [email protected]
12 April 2019 • EP Magazine | ep-magazine.com
lobes. Includes Eight (8) Shapes: Linear Hydrogen Chloride, Linear Beryllium Chloride, Bent Water, Trigonal Planar, Pyramidal Ammonia, Tetrahedral Methane, Trigonal Bipyramidal and Octahedral Sulfur Hexafluoride. SCHOOL SPECIALTY W6316 Design Drive Greenville, WI 54942 Phone: 888- 388-3224 Fax: 800-513-2467 Web: www.schoolspecialty.com Email: [email protected]
The Chewigem Eternity is an oral motor fidget designed for individuals, ages four and up, with sensory processing disorder. Designed for the mild to moderate chewer. Will not damage teeth. The pendant can be attached to InnovAID’s weighted vest or worn as a necklace. This item includes a breakaway clip. Can be used as a hand fidget if wearing a necklace isn’t tolerated. Colors options include silver, green, and black. The pendant is composed of medical grade, FDA approved silicone and is lead-, latex-, BPA- and Phthalate-free. Cords are silky to touch, approximately 35 inches can be adjusted to the desired length. INNOVAID 92536 – 688 Wye Road Sherwood Park, AB Canada T8A 3X4 Phone: 780-467-7627 Web: www.innovaid.ca Email: [email protected]
ABLEDATA Over 40,000 assistive technology products in an easy-to-use database!
INTRODUCING THE ALL-NEW
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EP’s Innovative New Digital Strategy Exceptional Parent Magazine is proud to announce the launch of www.ep-magazine.com – our all new website which coincides with our expanding role as a leader in the field of special needs publishing and communications. www.ep-magazine.com now features a bold new design and intuitive site-wide navigation system with improved menu functionality that directs you to the information most relevant to you. It is also fully responsive with mobile devices, making it easy to navigate on a wide range of web browsers and portable devices. We’ve introduced a range of new content to the website, including In This Issue that highlights selected content from our latest issue, and
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EP-MAGAZINE.COM: AN ALL-NEW DIGITAL HOME FOR THE SPECIAL NEEDS COMMUNITY
h w Nem n! olu C hR W
CHRISTINA LLANES MABALOT
CO N T
Early Intervention: My Personal Journey Now that my baby is graduating from college this May, I am fiercely advocating for the implementation of Early Intervention and for the re-education of society about people with special needs. If mainstream society could label, stereotype and confine a child without special needs unflinchingly, can you imagine what they could do to our children with special needs?
Life begins at conception
fer as I did. As a result, I pursued Special Education as a and so does education. Early Intervention Master’s degree. My vocation is a crucial part of the life-long process of was born! education that begins from age 0-6 years old, After graduate school, I the most formative period of a person’s life. founded a pre-school that It has evolved as a formal discipline to accommodated children with develop children with special needs to their special needs. I searched the maximum potential with the full support community to identify babies and teamwork of their families, caregivers, and toddlers with special communities and the allied medical profesneeds to train their parents and families to sionals. provide these children with infant stimulation. This was before the 1990s, the preEARLY INTERVENTION 101: high technology dark ages. I didn’t have THE CALLING special equipment nor an organized plan. I recognized the importance of early What I learned from intervention when I school I implementwas in college. A ed using sheer comlegally blind student mon sense at that in a regular universitime. My goal for ty without special giving early stimueducational services, lation to these chilI had been relying on dren was to prepare my failing residual them for inclusion vision to function. in my pre-school Walking to the bus and eventually stop one day, I ran include them in reginto a pole. The ular “big” schools, impact was so stunas I called them. I ning I almost I went by the slogan: passed out. Not “Bring out the best knowing what hapin your child." pened, I got up and In the orientation touched my foresessions, I demonhead where it hurt strated to the famimost. I felt the growMAKE A WISH: The author celebrating son Paulo’s fourth birthday. “I determined to lies and caregivers ing bump and I felt prove that my child did not have ADHD. I labeled my alphabet and number cards with that teaching can like a unicorn! It hurt their corresponding Braille symbols and homeschooled my sighted child.” take place in daily so bad that I indulged in a pity-party that night. Then it could only learn as much and as fast as I life at home and everywhere. I worked with dawned on me that lately, I could no longer could at that point. I thought to myself that commonplace things in the family’s house: read my handwriting. It always seemed this should not happen to other children utensils; plates; cups that I clanged to make evenings in the classrooms, even during with special needs. I vowed to myself that I sounds, and for the kids to stack and sort; daytime. I couldn’t recognize my friends would train children with special needs for fruits for texture, scents and taste; shoe until I heard their voices when they spoke the skills they need in life and that they boxes; balls for shapes; strings; beads; up. I froze at the thought that I was seeing need to start young—so they wouldn’t suf- backyard implements, and so on. I worked 14 April 2019 • EP Magazine | ep-magazine.com
off my residual vision. I brought myself to switch paradigms and admit my total blindness. I lined up the things I needed to do to finish my college education alive. Most important was to acquire a cane and practice mobility, orientation and learn Braille, which I knew was a foreign language altogether. Overwhelmed by the time and effort I needed to be adept in these skills, I desperately wished I could go back in time to early childhood to start learning them, but I got a reality check. I
PHOTOS PROVIDED BY CHRISTINA LLANES MABALOT
with all kinds of special needs children. I and the community. They appreciated my Intervention programs. The biggest victory instructed parents and caregivers to sup- work with young children with special was establishing a center-based program at port young children to achieve a certain needs and sponsored my formal training in a regular school wherein the children objective or do the tasks at hand. If a kid “Early Intervention for the Blind and could be readily mainstreamed after or simultaneous with the Early Intervention needed to be carried, they carried them. program. The number one house rule that I highOne child had a motor impairment. I lighted is that the children should always requested my husband, an engineer by be affirmed, so that the seed of empowereducation, to develop adaptive tools for her ment could be planted in the babies’ heart, to be able to write with a pen and go about for them to gain the confidence to “do.” So basic self-help skills. When I thought she that, eventually, they’d have the ability to was ready for mainstreaming, I, together “become." with her parents, advocated for her to be Likewise, activities at the Center were admitted to a private school in their neighnon-traditional. I re-invented activities for borhood. This child often landed at the top the children to be able to do. Toddlers with of her class. special needs relished playing in the sandbox, enjoyed playground equipment, shaped and baked cookie dough and EARLY INTERVENTION 103: played socialization games. I cared for Multiply- handicapped” at the Perkins A MOTHER WITH VISUAL almost every domesticated animal – dogs, School for the Blind in Massachusetts. IMPAIRMENT TEACHING HER cats, rabbits, chickens, monkeys and Thanks to them, my practice was certified, CHILD WITHOUT SPECIAL enriched and structured. I went back to the NEEDS guinea pigs for the children to pet. From experience, I could say that the Philippines equipped to empower. My A few years later, I became pregnant heart of Early with my first child, Intervention is cultimy son. Although I vating the children’s was concerned love for learning. I about the possibilialways incorporated ty that my child learning with the might inherit my activities the child genetic condition, loved to do. My aniridia, I intenfavorite success tionally decided story is how a child not to stress about with autism learned it for his sake and to read. This child even indulged could literally live in myself in my hobthe playground. It bies and favorite was his safe place. So things. Whenever I I held one-on-one listened to audioreading sessions books, I held my with him in the playplayer next to my ground. Two years tummy for the later, he would pick baby to hear it ACHIEVER: Jem being presented the Summerville, SC Mayor’s Committee Scholarship up books in the Award. “Every child is unique and different that raising skills have to evolve out of the more clearly. I library and read end- specific needs of the particular child. This was the point of a career turning into a lifestyle.” requested friends lessly. who could speak work expanded from directly servicing foreign languages to talk to my child. An children to integrating an Early enjoyable and anxiety-free pregnancy is EARLY INTERVENTION 102: Intervention component into establish- one of a mother’s best gift to her baby in A BONA FIDE PRACTICE One day, the country director for Helen ments. I conducted training for teachers, her womb. The child would have gained Keller International Philippines and the community and social workers of institu- the raw materials to emotional health. When my sighted child was in preregional director of the Hilton-Perkins tions for children with special needs, and up community-based Early kindergarten, during the first parentInternational Program visited the Center set
“I held one-on-one reading sessions with a child with autism in the playground – it was his safe place. Two years later, he would pick up books in the library and read endlessly.”
ep-magazine.com | EP Magazine • April 2019 15
teacher conference, his teacher told me that he was not able to learn how to read because he apparently “had ADHD.” After my initial shock, I was ready to kill. They were ready to label a child and dismiss him as unteachable. I had flashbacks of those same cultural misperceptions I suffered and had a post-traumatic stress syndrome attack. But I took to “fight” and not to “flight.” I determined to prove that my child did not have ADHD. I labeled my alphabet and number cards with their corresponding Braille symbols and homeschooled my sighted child. He was fast learner! He was just so bored in school at that time, so I put him in a non-traditional one.
EARLY INTERVENTION 104: A MOTHER WITH VISUAL IMPAIRMENT TEACHING HER OWN CHILD WITH VISUAL IMPAIRMENT Seven years later, I gave birth to my second child, a visually-impaired girl. I was devastated! No amount of history, experience, and education is ever enough to
Inclusion Works for Opportunity
prepare for a blind parent to raise a child with special needs. Every child is unique and different that raising skills have to evolve out of the specific needs of the particular child. This was the point of a career turning into a lifestyle.
inviting them to the community, and actually sharing information we have in our hands (such as, for example, the link for this digital magazine), we will win them forever.•
EARLY INTERVENTION 105: ADVOCACY Now that my baby is graduating from college this May, I am fiercely advocating for the implementation of Early Intervention and for the re-education of society about people with special needs. If mainstream society could label, stereotype and confine a child without special needs unflinchingly, can you imagine what they could do to our children with special needs? The good news, however, is that I believe these attitudinal barriers are more the result of ignorance than cruelty. We’ll have a greater impact if we also educate the non-disabled within society about our children. If we confront them, we drive them away from our community. But if we educate them by telling our stories,
HEARTSIGHT Christina Llanes Mabalot is physically blind from aniridia, but has a vision. She enjoys touching people’s lives to bring out the best in them. “Heartsight” explains her ability to see with her heart. Christina earned her B.A. degree and Masters in Education from the University of the Philippines, Diliman, specializing in Early Intervention for the Blind. She later received Educational Leadership training through the Hilton-Perkins International Program in Massachusetts, then worked as consultant for programs for the VI Helen Keller International. She has championed Inclusive Education, Early Intervention, Capability Building and Disability Sensitivity programs. She was twice a winner in the International Speech contests of the Toastmasters International (District 75) and has been a professional inspirational and motivational speaker. Christina is blissfully married to Silver Mabalot, also physically impaired, her partner in advancing noble causes. Their children are Paulo and Jem, who has aniridia.
Inclusion Works for Business
National Disability Employment Awareness Month
#InclusionWorks OFFICE OF DISABILITY EMPLOYMENT POLICY UNITED STATES DEPARTMENT OF LABOR
16 April 2019 • EP Magazine | ep-magazine.com
Inclusion Works for Innovation
AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE & DENTISTRY
Federal data show that people with disabilities are likely to interact, at some point with first responders to varying incidents. “…the FBI Law Enforcement Bulletin found in 2001 that people with disabilities, including autism, have up to seven times more contact with law enforcement officers than other members of the population.”
“Understanding is a lot like sex. It’s got a practical purpose, But that’s not why 1 people do it normally.” BY H. BARRY WALDMAN, DDS, MPH, PHD, STEVEN P. PERLMAN, DDS, MSCD, DHL (HON) AND JEFFREY SEIVER, DDS he major newspaper for Long Island, New York, Newsday, recently had a full two-page article describing the misunderstandings between the police and individuals with disabilities. “The repetitive movements. The lack of eye contact or failure to respond to simple questions. Outbursts that can become physical. For millions of families with loved ones on the autism spectrum, the behavior is all too familiar. But through the eyes of a police officer or first responder, the signs can be confusing – or potentially threatening.”2 New York State, moving to address that communication gap, has begun issuing ID cards for people with intellectual or developmental disabilities that can be presented to law enforcement, firefighters and emergency services personnel to prevent these encounters from becoming dangerous for all involved (please see Figure 1, next page). 2
The card, which is free and voluntary for all families, contains standard information about a person – name, address, date of birth and emergency contact and a disclaimer that the holder may have difficulty understanding and following directions, or may become unable to respond. “I may become physically agitated if you prompt me verbally or touch me or move too close to me.” The back of the card can be personalized to a person with unique challenges. For example, it could give an instruction to law enforcement not to make sudden movements, to speak in a calm and reassuring voice or to shut off a police siren to avoid sensory overload. Unlike individuals with Down syndrome or cerebral palsy, who are immediately distinguished based on physical characteristics, people with autism often look like an individual without intellectual developmental disorder. But their behavior can sometime appear erratic, often if a routine is upset and it can manifest itself in a multitude of ways. For example, many autistic people manage
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. 18 April 2019 • EP Magazine | ep-magazine.com
FIGURE 1: The Developmental Disabilities Identification Card contains the holder’s name, address, date of birth, emergency contact, and a disclaimer that the holder may have difficulty understanding and following directions or may become unable to respond. bouts of anxiety in stressful situations by repeating a phrase or motion, such as rocking back and forth or spinning. 2 • A law enforcements officer could think the person is intoxicated or intentionally ignoring their instruction. • The police department now requires 26 hours of mandatory mental health and disability training for new recruits, including a focus on autism awareness. • Police officers are trained to look for nuance signs that someone may have a developmental disability, such as lack of eye contact or repetitive behavior. For example: “When interacting with a person with autism:
• Be patient and give the person space. • Use simple and concrete sentences. • Give plenty of time for the person to process and respond. • Be alert to signs of increased frustration and try to eliminate the source if possible as behavior may escalate. • Avoid quick movements and loud noises. • Do not touch the person unless absolutely necessary. • Use information from caregiver, if available, on how to best respond.” 3 The State of Illinois issues a comparable card as proof of disability. The card may contain medical information that could be helpful in emergency care. Five types of
disabilities are specified: • Physical: A permanent physical loss, impairment, or disease, which significantly limits physical ability or motor skills • Developmental: A disability that is because of: ■ An intellectual disability, cerebral palsy, epilepsy, or autism; or ■ Any other condition that results in impairment similar to that caused by an intellectual disability. • Visual: Blindness • Hearing: A disability that results in complete absence of hearing. • Mental: A significant impairment of an individual's cognitive, effective, or relational abilities. 4
INTERACTION WITH LAW ENFORCEMENT OFFICERS Federal data show that people with disabilities are likely to interact, at some point with first responders to varying incidents. “…the FBI Law Enforcement Bulletin found in 2001 that people with disabilities, including autism, have up to seven times more contact with law enforcement offi-
PATIENCE PLEASE: The behavior of a person with autism can sometime appear erratic, especially if a routine is upset, and it can manifest itself in a multitude of ways. When interacting with a person with autism, be patient and give the person space, and give plenty of time for the person to process and respond.
ep-magazine.com | EP Magazine • April 2019 19
ONE OUTCOME “People with disabilities are just like us. They have dreams and other things just like us.” – As said by a 4th-Grade Student at the Birch Meadow Elementary School in Reading, MA, and recorded by Understanding Disabilities Inc. Visit www.understandingdisabilities.org to learn more. ABOUT THE AUTHORS: H. Barry Waldman, DDS, MPH, PhD is a SUNY Distinguished Teaching Professor, Department of General Dentistry, Stony Brook University, NY. E-mail: [email protected]
Steven P. Perlman, DDS, MScD, DHL (Hon) is the Global Clinical Director and founder, Special Olympics, Special Smiles and Clinical Professor of Pediatric Dentistry, The Boston University Goldman School of Dental Medicine. Jeffrey Seiver, DDS is Clinical Assistant Professor, Department of General Dentistry, Stony Brook University, NY.
NO GUARANTEES: When dealing with individuals with developmental disabilities, law enforcement officers may be advised to not to make sudden movements, to speak in a calm and reassuring voice or to shut off a police siren to avoid sensory overload. cers than other members of the population.” 2 In particular, individuals with Asperger’s syndrome (a mild form of high-functioning autism more common in males than in females) are over-represented in forensic criminal settings. “Unique features of such persons may heighten their risks for engaging in criminal behavior, including: a
predilection for intense narrow interests, when coupled with deficient social awareness of salient interpersonal and social constraints on behavior, can result in criminal acts… these disorders appear to have a biological underpinning for deficits in understanding… a finding that may have important repercussions when assessing remorse in criminal proceedings.” 5
1. Oppenheimer N. Quotes. Available from: https://www.goodreads.com/quotes/497743-understanding-is-a-lotlike-sex-it-s-got-a-practical Accessed March 11, 2019. 2. Brodsky R. New ID cards may help those with disabilities. Newsday A20-21, March 10, 2019. 3. Autism Speaks. Search and Rescue. Available from: https://www.autismspeaks.org/search-and-rescue Accessed March 12, 2019. 4. Illinois Legal Aid on Line. ID card for people with disabilities. Available from: https://www.illinoislegalaid.org/legal-information/idcards-people-disabilities Accessed March 12, 2019. 5. Haskins BG, Silva JA. Asperger’s Disorder and criminal behavior: forensic-psychiatric considerations. Journal American Academy of Psychiatric Law, 2006; 34:374-384.
UNDERSTANDING DISABILITIES (NORMALLY, PEOPLE DO NOT) : SOME SOURCES OF INFORMATION
UNDERStANDING DISABILItIES Offers a comprehensive K-8 disability awareness curriculum that helps build school cultures and student interactions based on a foundation of mutual respect and understanding. Stronger interpersonal relationships, healthier school climates, improved student well-being, and higher rates of academic excellence are only some of the measurable and quantifiable outcomes of our innovative program. Available from:
IRIS CENtER Offers a wide variety of free, online resources about evidencebased instructional and intervention practices, including modules, practice guides and research summaries developed in collaboration with nationally-recognized researchers and education experts, to support the education of all children, particularly those with disabilities. Available from: https://iris.peabody.vanderbilt.edu
SPECIAL OLyMPICS UNIFIED CHAMPION SCHOOLS The mini-lessons on understanding disabilities can be used as part of schoolwide instructional lessons to assist with developing attitudes and behaviors that are respectful toward all students, regardless of ability. Available from: https://media.specialolympics.org/resources/community-building/youth-and-school/unified-champion-schools/Mini-Lesson-Understanding-Disability.pdf
20 April 2019 • EP Magazine | ep-magazine.com
NAtIONAL CENtER ON ACCESSIBLE EDUCAtIONAL MAtERIALS FOR LEARNING Provides resources addressing eligibility and services to ensure equitable opportunities for children with disabilities. Available from: https://ccrs.osepideasthatwork.org/teachers-social-emotional-behavior/ understanding-disabilities
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“Parents of special needs children deserve your respect and support. They are ‘hidden heroes’ who bravely face autism and all the overwhelming challenges and huge responsibilities that accompany it.”
Here are some ways you can make a huge and meaningful difference in their lives.
22 April 2019 • EP Magazine | ep-magazine.com
WAYS FOR THE PUBLIC TO SUPPORT SPECIAL NEEDS PARENTS BY DEANNA PICON
“I really don’t want to go shopping at the mall today. People are mean and make fun of us.” And my mother turned around, looked at me and said “Tomorrow is another day. It’ll get better. You wait and see.” And she was right, all those years ago. This is one of the many reasons why I buy her a “World’s Best Mom” card every Mother’s Day. She’s a very wise woman. WELCOME TO MY WORLD A shopping trip to the supermarket. A simple meal at a fast food restaurant. A good time at the movies. For most people, these are simple, ordinary and enjoyable activities. But for many special needs parents, participating in these everyday events can be stress-
ful and overwhelming. Venturing out in public with their disabled child can be a very embarrassing and shameful experience. And it isn’t always their child’s condition or meltdowns that cause their anxiety. Often times, it’s the negative and unpleasant behavior of strangers or other members of the public who make these parents feel unnecessarily bad about their situation. Now to be fair, I’m confident that most people don’t get up in the morning and say “I’m going to purposely humiliate a special needs parent.” In fact, I’m sure that a majority of the public are totally unaware of the impact their behavior has on these families. However, parents of special needs children deserve your respect and support. They are “hidden heroes” who bravely face autism and all the overwhelming challenges and huge responsibilities that accompany it. Here are some ways you can make a huge and meaningful difference in their lives:
1. BE SYMPATHETIC
2. HAVE PATIENCE AND CONSIDERATION
This is the easiest and most considerate thing a person can do. Just put yourself in their position. Keep in mind, these parents are just like you. Every day, they get up, work hard and provide for their families. They go grocery shopping, buy gas for their cars, wash clothes at the laundromat and do a hundred other things that we all do in our daily lives. But, unlike you, special needs parents have to put on an invisible armor of protection as they tread out into their communities with their special needs child, for they know what awaits them. “What’s wrong with that girl? She looks funny.” “Shut that kid up. He’s making stupid sounds.” “What kind of dad lets his son do that? He acts like an animal.” “I’m glad I don’t have a kid like that.” How would you feel if you had to constantly shield blatant stares, have people point at you and make snide remarks while looking and wondering why you can’t control your young or adult child? There are many who fail to realize that it’s hard enough raising a special needs child without the whole world staring, passing judgements and making disrespectful comments. It will be a wonderful day when people understand that an autistic child or adult can’t help exhibiting the traits of autism any more than a child with one leg can help limping. These parents have to turn the other cheek and take the high road when they hear people laughing, whispering or saying hurtful things about their child’s inappropriate behavior. But over time, to their credit, they learn how to develop a thick skin, take a deep breath and resist the urge to punch everyone who looks at their kid strangely. That’s character building in action!
Here’s a little quiz for you. Answer either a, b, c or d. Question #1. If you were behind an elderly woman, who was walking with a cane and crossing the street, what would you do? a) push her out your way into oncoming traffic b) yell and scream at her to get out of your way c) help her cross the street safely d) none of the above Now, I’m not a gambling person, but I would bet a few hundred dollars that 95% of the general public would choose answer “c.” And that would be the right thing to do. Question #2. If you were behind a disabled boy, who has leg braces on and was walking on a crowded street, what would you do? a) walk quickly by him, brushing him out of your way b) walk slowly behind him, looking annoyed and yelling at him to hurry up c) walk patiently and slowly behind him d) none of the above I’d guess that 65% of the public would choose answer “c.” And why is that? Why does the public typically act one way toward the elderly and another toward the disabled? I’m sure it’s because our society is conditioned to treat the elderly with the utmost respect, understanding and compassion. Most people are raised early on to respect our elders. So why wouldn’t one show the same kindness and compassion to disabled children and adults that one shows to the elderly? After all, they aren’t all that much different. They both need your help, guidance and support. It’s important to try to remember this the next time you’re out in the community and encounter a special needs family. ep-magazine.com | EP Magazine • April 2019 23
A SEAT AT THE TABLE: Individuals with special needs are part of our communities, and it’s important for them to function within our society to the best of their abilities. Welcome them with a simple smile or approving nod. It doesn’t cost you anything and it will definitely make their day as well as those who accompany them.
3. ASSIST IF YOU CAN
5. BE PART OF THE CHANGE
Small acts of kindness can have a big impact. For example, if you’re waiting on a supermarket check-out line and you notice a parent behind you who is having a hard time with his/her disabled child, offer to let the parent go ahead of you. If you see a special needs child getting tired and irritable while standing in line, offer to find a store employee who may be able to bring a wheelchair for the child, so she/he can be more comfortable. Restaurant employees can also help create a pleasant dining experience. One suggestion is offering a special needs family a booth or table that’s in a relatively quiet and non-crowded area of the restaurant. This will allow them to avoid the harsh glare of many who may frown upon or make fun of their child’s eating habits or table manners.
Special needs individuals are part of our communities. And it’s important for them to function within our society to the best of their abilities. When they’re out in public with their parents, school personnel or other groups, welcome them with a simple smile or approving nod. It doesn’t cost you anything and it will definitely make their day as well as those who accompany them. For many individuals, it takes a lot of work to be out in public because of mobility, behavioral or other issues. Always keep in mind, they are doing their best and should be praised for their efforts and not mocked. Going to everyday places such as local libraries and doing self-sufficient activities like grocery-shopping is the only way they will learn and grow. People just have to remember that they’re human too. They have feelings, and good and bad days, like the rest of us. They don’t deserve to feel uncomfortable or unwanted for trying to be part of the community where they live and, perhaps, work.
4. ACKNOWLEDGE THEIR DEDICATION All parents who stay and accept the challenges of raising a child with autism or special needs deserve a medal for courage. They have faced up to their responsibilities even though it has meant braving unchartered territory. Even though they didn’t know what was ahead, they took a deep breath and walked on. So, in addition to all of the activities and obligations of any parent, they have to handle therapists’ appointments, medical appointments, extra hours for meeting their child’s physical needs, research into educational programs… the list goes on and on. They do the best they can, often putting their own personal and professional needs on the back burner, out of love and devotion to their child. Because of their determination, their child will have a better life. That’s something worth patting them on the back about. So, wouldn’t it be great to let them know they’re doing an amazing job? Express your support. Words of encouragement and praise are a great morale booster. Tell them “You’re a wonderful parent. Your child is blessed to have you in his life,” or “I admire your devotion to your family.” Little gestures can also go a long way. We all hear about “pay it forward” activities. These are simple and creative ways to spread a little kindness and joy in the world. You can really make a parent’s day by offering to buy a cup of coffee or a bag of apple slices for their child at a fast food restaurant. 24 April 2019 • EP Magazine | ep-magazine.com
6. INCREASE PUBLIC AWARENESS As our country recognizes National Autism Awareness month, hundreds of autism organizations, local businesses and thousands of people will bring much-needed attention to the key issues and topics surrounding autism, as well as the plight of the millions of children and adults it affects. Prominent national landmarks will light up in blue, autism walks will be held throughout the country and major fundraising campaigns will be conducted to raise money for increased research. This is a perfect time to learn more about autism. Watch a TV news report, read an article or go online to gain a better understanding of this disorder. Start a conversation with a friend or family member. If you can, participate in a local autism event in your area. You don’t have to be personally affected by autism to become involved in charitable activities such as a walk or community fundraiser. Purchase goods and services from companies that contribute to autism-related causes. Donations to local and national autism organizations are always welcome and appreciated.
WE’RE ALL IN THIS TOGETHER As members of the community, special needs parents also have to do our part to communicate and encourage a better understanding of our children and families. When out in public, we should try to move beyond the stigmas and view it as an opportunity to educate others by our examples. It may not be easy, but we can make an effort. We can help eliminate common misconceptions about individuals with disabilities and replace them with facts. Obviously, not all people are bad, ignorant and judgmental. There are still nice, kind and compassionate people in the world. And while many have been raised to respect the elderly, there are those who were raised to be fearful of, and told not to engage with the disabled. Hopefully, in time, this will change. My mother always told me the best thing we can do in life is follow the golden rule: Treat others as we would like to be treated. And if we all did this, what a wonderful world it would be.
SHOPPING IS A BREEZE
the summer and I use my “autism ribbon” shopping bag yearround. And every once in a while, I’ll get a high five, thumbs up or “way to go” shout-out from fellow shoppers, which always bring a smile to my face. There’s no room for embarrassment anymore; only pride for me and my family, which is the way it was always meant to be.• ABOUT THE AUTHOR: Deanna Picon is the founder of Your Autism Coach, LLC, which provides personalized guidance, comprehensive support programs and seminars for parents of special needs children. Her personal mission is to empower parents as they advocate for their children, while balancing productive work and family lives. She received her BA in psychology and BA in broadcast journalism from Syracuse University. Deanna is a parent of a non-verbal, young man with autism. She is the author of The Autism Parents' Guide to Reclaiming Your Life, available from Amazon and through her website, www.yourautismcoach.com. Email her at [email protected]
These days, going to the mall is fine. I often wear my “Proud Autism Mom” or “Special Needs Parents Rock” tee-shirts during
ep-magazine.com | EP Magazine • April 2019 25
HELPING YOUR CHILD WITH AUTISM
TRANSITION TO ADULTHOOD, THE WORLD OF WORK, AND INDEPENDENCE BY KRISTA DIGREGORIO AND ERNST VANBERGEIJK, PH.D., M.S.W.
According to the CDC (2019) 1 in every 59 children has been identified with an autism spectrum disorder (ASD). This translates in approximately 16 children with an ASD out of every 1,000 kids. The developmental disability crosses all racial, ethnic, and socioeconomic groups. Autism is more prevalent among boys than it is among girls, with estimates that ASDs affect males at a rate 4 times greater than among females (Baio et al., 2018). The broader classification of developmental disabilities, in general, affects 1 out of 6 children. 26 April 2019 • EP Magazine | ep-magazine.com
These developmental disabilities range from mild to more severe. Milder forms of developmental disabilities often involve speech and language impairments. More serious developmental disabilities can include intellectual disabilities, cerebral palsy, and autism (CDC, 2018). There is a total of approximately 450,000 transition aged youth between 16-24 years old in the United States (U.S. Department of Health and Human Services, 2017). Each year 50,000 young adults with ASDs turn age 18 and are looking for post-secondary experiences (U.S. Department of Health and Human Services, 2017). There are a number of post-secondary options for young adults on the autism spectrum. These options may also apply to students with other kinds of disabilities. Going to a 2-year or a 4-year college appeals to many students on the spectrum. They are no different than many of their neurotypical peers in this regard. Many students do have the intellectual and academic capacity to
MAKING THE TRANSITION: WORK & INDEPENDENCE Regardless of whether a student stays in a school district transition program, attends and graduates from college, or attends a post-secondary transition program, there are a number of strategies parents can employ to foster their young adult’s independence and employment. These suggestions or strategies hold true not only for students with ASDs, but for young adults with a variety of different kinds of disabilities. of their expenses. This is even more apparRemember that your student is Allow your student to experience ent if they are living independently. Often experiencing many “firsts” during good and bad interviews. They will the added financial pressure students feel this transitional year. Keep in mind gain valuable skills and become more is too much for them to handle. adept at handling a variety of situations that although employment is an immediRealistically, many parents will need to this way. Have them solicit input from ate need, they may also be adjusting to livsupplement their student’s income for interviewers whenever possible and use ing independently. Apartment living is that information to improve on their skills. unfamiliar and involves many new skills some time. If they are working with a program for and should be treated as such. Guide employment assistance, they most likely them to learn to use free time effectively Treat your student as a young adult can solicit this information for the student and create structure in their day. Much of reaching for independence. They from the interviewer and use it to prepare this will take time and it is a very different may have to work evenings, weekends for future interviews. Often the mistakes experience than their previous educationand commute to their jobs. This is all part made in these situations are the most focused experiences where most of their of the process. Please help them to accept time was scheduled. Many parents stress this reality and stay positive. There are helpful for improvement. only the employment component but safety measures that can be put into place should also acknowledge this adjustment. to ensure more peace of mind for parents. Remember that a job search takes Allowing time and energy to be focused time. Encourage your students to keep on independent living will benefit the stucommunicating with their support staff dent immensely when they begin to add and keep them in the loop throughout the hiring process. They cannot assist if they working to the mix. are not aware of employer contact, whether it be by phone or email. There is no Stay flexible and open to a variety magic number and the hiring process is not of positions. Clarify your preferences for always predictable. We are all completely full/part-time employment with your studependent on the employer’s timeline and dent prior to their job search. Also be clear on limitations due to potential benefits, need to remain responsive at all times. including SSI and SSDI. Try not to specify one ideal position rather a bunch of Please only communicate with options. Create an employment plan employers through your student or employment support staff. Parents based on your student’s needs and wants. should never directly contact an employer. Establish realistic expectations The relationship your student has with around your student’s work schedAcknowledge that this is your stutheir employer is easily undermined. ule. It may be tempting to want your student’s first paid employment expeOften, employment support staff have fosrience. It will be an entry-level position dent to accept a job or seek multiple jobs tered relationships with these businesses based solely on budgetary factors. During and will pay accordingly. Confirm that that this first year of independence, there are they will have many jobs in their career and can easily access management. many aspects to consider before accepting and each time add to their skill set in some a position and / or seeking a second job – way. Employers do not hire candidates Provide support and allow employaccess to transportation, ample time for based on their potential. They are interestment support staff to use their classes, apartment management, sleep, expertise. They most likely have many ed in what they can contribute now. and maintaining healthy social relationyears of experience in similar situations ships, to name just a few. Strongly encourand can often anticipate outcomes you Give your student some financial age your student to speak with their supwiggle room. Understand that like most may not expect or predict. Remember they port staff and you before accepting or young adults, these students will most are equally motivated to have all of their declining a position. likely not be able to immediately cover all students employed. complete a college degree. However, finding and getting into the “right” college should not be the end goal. Rather, the goal should be entering the world of work and engaging in independent living. Often colleges do not prepare young adults for this major transition. Students with autism need explicit training in interviewing techniques, working with colleagues and supervisors, and a vari-
ety of skills pertaining to the management of an apartment like budgeting, bill paying, cooking and laundry. A few colleges do provide this type of training and support while the student pursues an academic degree. Another option is for the student to continue staying in their home school district to attend an in-district transition program. ep-magazine.com | EP Magazine • April 2019 27
Often school districts will work in coordination with state offices of vocational rehabilitative services to help train and locate employment for the student. A third option involves community-based or collegebased transition programs. Communitybased transition programs can be either private, for-profit or not-for-profit entities which typically operate out of an apartment complex. Many have memoranda of understanding with local community colleges. Qualified students can take creditbearing classes through these agreements. Independent living skills are often taught directly in the young person’s apartment and are ideal for those students who have difficulty generalizing skills across environments. College-based transition programs, on the other hand, are departments of the college or university in which they reside. They draw upon the infrastructure of the university and many have a residential component to the program in addition to a specialized curriculum focusing upon the acquisition of employment, independent living, and social skills (with an eye on
28 April 2019 • EP Magazine | ep-magazine.com
community involvement). Some of these college-based transition programs will be able to offer federal student aid. Others offer institutional aid or work in cooperation with school districts to fund the students’ attendance. College-based transition programs may even offer a graduated structure of services starting with living in the dormitories to providing a “transition year program” after living in the dormitories, and following a core curriculum of employment training along with independent living skills classes. These post-transition programs help their graduates find and keep employment and provide inhome supports through Independent Living Advisors (ILAs) who visit the apartment on a regular basis. The transition from post-secondary education to the world of work and independent living is both exciting and nerve-wracking for both the young adults with ASDs as well as the parents. Know that there will be many advances and some set-backs. The key is to be patient and provide sufficient scaffolding to allow their growth to unfold.•
ABOUT THE AUTHORS: Krista DiGregorio is the Director of Lesley University’s Threshold Alumni Center, providing free lifetime employment and independent living supports to all Threshold alumni. Dr. Ernst VanBergeijk is the Director of Lesley University Threshold Program which is a collegebased transition program for students with a wide variety of learning challenges. www.Lesley.edu/threshold
References Baio J, Wiggins L, Christensen DL, et al. Prevalence of Autism Spectrum Disorder Among Children Aged 8 Years — Autism and Developmental Disabilities Monitoring Network, 11 Sites, United States, 2014. MMWR Surveill Summ 2018;67(No. SS-6):1–23. DOI: http://dx.doi.org/10.15585/mmwr.ss6706a1 Center for Disease Control and Prevention. National Center on Birth Defects and Developmental Disabilities (April 9, 2018). Key Findings: Trends in the Prevalence of Developmental Disabilities in U. S. Children, 1997–2008. Retrieved from: https://www.cdc.gov/ncbddd/developmentaldisabilities/features/birthdefects-ddkeyfindings.html March 14, 2019. Center for Disease Control and Prevention. (2019). Data & Statistics on Autism Spectrum Disorder. Retrieved from: https://www.cdc.gov/ncbddd/autism/data.html March 14, 2019. U.S. Department of Health and Human Services. Report to Congress: Young Adults and Transitioning Youth with Autism Spectrum Disorder. October 2017. Retrieved from the U.S. Department of Health and Human Services website: https://www.hhs.gov/sites/default/files/2017AutismReport.pdf March 14, 2019.
INNOVATION AT NEW HEIGHTS
ABOUT THE AUTHOR:
As a special educator, Angela Shaw endeavors to maintain a responsive and proactive approach toward problem solving through the 3 C’s of: communication, collaboration and creative thinking to provide students learning that will grow for a lifetime. Her publishing voice synthesizes her diverse education and experience relative to special
Public safety, government and commercial applications throughout the world
education topics and families. Most recent articles published within EP Magazine include topics about decreasing stress & anxiety, supporting collaborative efforts and understanding dyslexia. Shaw earned Masters’ degrees from Azusa Pacific University in Special Education and School Counseling.
References Center for Parent Information and Resources (9/16/17). [Retrieved: 6/29/2018 from http://www.parentcenterhub.org/manifestation]. Manifestation Determination. Newark, NJ
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“AcceptAnce” is A stArt— not A Finish BY MICHAEL JOHN CARLEY
Author’s Note This article is reworked from a 2018 piece written – with thanks for fabulous editing help from Saman Kamgar-Parsi and Sherri Alms – for the Organization for Autism Research1
Remember when “tolerance” was thought to be a stepping stone of social progress, even though it emanated a clear, condescending subtext of “Oh, wellllllll, if I haaaave to…”? At the time, we thought the concept of racial tolerance, or religious tolerance, was revolutionary. In the ensuing years thereafter this morphed into “awareness,” which too often could imply that “we wanted to make you aware that autistic lives are worth very little.” 30 April 2019 • EP Magazine | ep-magazine.com
PHOTOS PROVIDED BY MICHAEL JOHN CARLEY
the context oF “AcceptAnce”
We’re not done. My spectrum son is 22 now. And as I wrote in a 2017 Father’s Day piece for NEXT for Autism, he sees all the advocacy work that we accomplished 10 to 15 years ago as helpful, but he doesn’t want to emulate it.
MY GENERATION: The author with his son; “His generation keeps me honest. They allow me to see that our autism world has become complacent. There are so many true heroes from those 15 years past – famous folks! – who, today, are unsuccessfully struggling to maintain relevance. It’s tough to watch, especially because I could be next.”
ell, time passes, and today we can sniff out ethical flaws with a lot more accuracy. But what’s consistent with nearly every stage of progress is that we frame the milestones – such as our use of the current word “acceptance” – as conclusions. It’s always the end of a journey, a road, or even a “battle.” Especially in the autism world, we imagine ourselves having collapsed in frustration just as we reach “the end,” i.e. whatever new word we’re at. Would it be more productive if these steps were instead thought of as beginnings, births, or dawns?
ARTWORK BY MICHAEL JOHN CARLEY
thrived off this for 28 years. Now I live in Wisconsin, where they are NOT crazy about people with behavioral differences. I’m constantly reminded of the disapproval I felt as a 1970s New England schoolkid. New York in 1986 was twenty times more behaviorally permissive than both that culture, as well as 2019 Wisconsin. Are all these perceptions of acceptance simply relative then? Perhaps filled with societal conditions that warp our ability to decipher if we’re really being accepted?
Last year, the Organization for Autism Research asked me to write about the concept of autism “acceptance.” Sitting down, I thought: “I know what acceptance feels like in the present – equal employment opportunities, policies of inclusion, being surrounded by a real community, and people that care about or love me. But what does acceptance look like in the future? I know how the context of DSM*-5’s present-day definition of autism resonates with the world, but what will (picking a future edition at random) ‘DSM-14’ look like?” I wondered how autism will be defined then. Or… will my and others’ behavioral differences simply disappear from the DSM because they are then thought of as natural, commonplace extensions of the human experience? Remember that autism and Asperger’s are not finite medical diagnoses that we get from an x-ray or a blood test. They are neurological, and therefore bestowed somewhat arbitrarily by the observance of interpreted behavioral differences. Our current acceptance then, of anything that differs from a majority mindset is usually the precursor to respect, which is followed by celebration, after which comes dismissal because that which once required acceptance doesn’t need accepting anymore. My point isn’t to blow your mind with perspective, evade critical thinking through “semantic contrarianism,” or to idiotically tell you that we’re all one, big, happy family. It’s instead to suggest we look at context when evaluating progress.
Many people treated the 2015 Supreme Court ruling that legalized same-sex marriage as the end of an incredibly long, socio-political battle. But it wasn’t. (In addition to what will be an arduous task to make sure the new laws are enforced) It was the beginning of a long, socio-political battle over the rights of all differing relationship structures outside of one man and one woman. For what about relationships between not just two men, or two women, but maybe incidents, however rare, where there are three, four people in the relationship, maybe more... structures where rights must be extended beyond two adults because there are children who rely on more than two adults? For example, the qualification for many low-income family housing programs is defined by the combined incomes of two parents/caregivers. Well, what if one family can’t qualify therein, but when you add the income of the third adult in the relationship, the family now qualifies?
“Accepted” to WhAt degree?
We’re not done
We all know what Stockholm Syndrome is, right? Where (at the risk of banalizing the condition) you have to think of your perpetrators/captors as far nicer people than they are, lest your stress/despair levels reach potentially-fatal heights. The gut reaction of acceptance through the filter of Stockholm Syndrome, is therefore… pretty inaccurate. And when I moved to New York City for grad school, the city seemed to scream at me, “Michael John, we love you!!!” and I
My spectrum son is 22 now. And as I wrote in a 2017 Father’s Day piece for NEXT for Autism,2 he sees all the advocacy work that we accomplished 10 to 15 years ago as helpful, but he doesn’t want to emulate it. Where we see identity, he often sees pathology, and quite frankly that’s a credit, not a discredit, to the work we all did. His generation keeps me honest. They allow me to see that our autism world has become complacent. There are so many
AlWAys Ask WhAt’s next
ep-magazine.com | EP Magazine • April 2019 31
true heroes from those 15 years past – famous folks! – who, today, are unsuccessfully struggling to maintain relevance. It’s tough to watch, especially because I could be next. My parents’ generation marched for civil rights, yet have often displayed what is now interpreted as a colonialist mindset. I have a loving grandmother, one who partially raised me, and who was instrumental in Planned Parenthoods’ growth in New England… yet whose sexual values were proudly, repressively Victorian. Despite the welcome increase
need to articulate having once felt so unwelcome after emigration. And finally, we’re also just really good songwriters. Well, where else other than Irish bars in London or New York can you find differing generations belting out the same lyrics† with such large and equal passion? Where they all hug after the night is over, or after a special song… drunk or not… Talk about a beautiful example of “acceptance” that works both ways...
conclusion Time is cruel. It passes, and our noses for that which is progress either become keener, or they stop working. Who knows – maybe in 50 years, what we consider acceptance today will be regarded as outright bigotry. And to wax slightly dramatic… maybe half of whatever acceptance of death we end up with is due to the fact that our “worlds” don’t exist anymore. As in philosophy, there are never answers – just better and better questions as we move along…all containing results that are out of our hands. What we can change is the atmosphere TIMES A CHANGIN’: Autism protest (art by the author); “Our noses for that which is of the road trip. And if we can try to progress either become keener, or they stop working. Who knows – maybe in 50 years, include more context, we might get to what we consider acceptance today will be regarded as outright bigotry.” whatever the next step is a lot quicker. in our present emphasis on diversity (i.e. flexibility), we are contra- Because if acceptance really were a finish line, then we would think dictorily also becoming more tribal (i.e. inflexible). We don’t roman- of that long journey as filled with only the opposite of acceptance tically couple across class lines like we used to. We can now easily – rejection, and pain. We will get to that unimaginable, better, next predict, and pigeonhole one’s voting tendencies just by looking at step. It’s inevitable. We just don’t know when or how. the individual’s skin color, education, and whether or not they live So why not instead consider acceptance to be a birth, and feel in a rural or urban community. energized, warm, confident, optimistic, and, dare I say it, loved a lot And then, to add additional context to all of this head-spinning more on our next journey? Because acceptance is great… for now. • change, there is “the intersectionality component,” where there is flexibility amidst the inflexibility, and to which I can personally pro- ABOUT THE AUTHOR: Michael John Carley is the founder of GRASP, a school vide a clear example… consultant, and the author of Asperger’s From the I’m Irish. And paternally I come from one of those Irish families Inside-Out (Penguin/Perigee 2008), Unemployed on the where most of the men would need to quit drinking at some point. In my Autism Spectrum, (Jessica Kingsley Publishers 2016), the upcoming Book of Happy, Positive, and Confident Sex family, some did, some didn’t. But I was lucky and got out at a young for Adults on the Autism Spectrum… and Beyond!, and age (27). Yet I am also one of few ex-drinkers who is insanely glad that the column, “Autism Without Fear.” In 2000, he and his I once drank. As a spectrum individual in a world that (back then, mind son were diagnosed with Asperger Syndrome. When reevaluated in 2014 under DSM-5, Carley was diagnosed you) didn’t tolerate spectrum behaviors, alcohol numbed my sympwith autism spectrum disorder. For more information on toms and lessened social anxiety. But, more important (and the reason Carley or to subscribe to his updates, go to I bring this up), is because my drinking allowed me entry into a www.michaeljohncarley.com phenomenon that one doesn’t see much of these days – old people and References young people connecting. Irish men across differing generations all know * Diagnostic and Statistical Manual of Mental Disorders (the shrink’s bible). many of the same songs, and they like to sing them loudly together. ‡ The British-induced “potato famine” of the 1840s caused the largest wave of Irish emigration to both Ok. Maybe the influence of booze invites outsiders to invalidate America and the UK. € Refers to the conflict in Northern Ireland from the 1960s-1998, the planet’s most recent example of this phenomena, because in the beginning, the booze definitely an occupying army that remains in the land it invaded. helps to give you the courage to try singing old songs with † What made the band “The Pogues” so special when they emerged in the mid-1980s wasn’t even their revolutionary blending of folk music with punk rock rhythms, or the songwriting ability of Shane grownups. But it’s not a tradition that thereafter needs booze, (and I MacGowan. It was that despite their punk rock aura, that in addition to their predictable fan base, that should know). This Irish inter-generational bonding is quite rooted Irish senior citizens absolutely loved them as well. Furthermore, the Pogues welcomed this, and never took them for granted. in the songs about the famine,‡ or the troubles;€ not the booze; pos1. https://researchautism.org/acceptance-is-a-start-not-asibly because we have a somewhat tortured sense of our origin, and finish/?utm_source=OARacle+Newsletter+Subscribers&utm_campaign=f6167e4f85that, like Cajun, black, and Jewish cultures (among others I’m OARacle+October+Issue+2017&utm_medium=email&utm_term=0_132914a232-f6167e4f85142287273 neglecting), we somewhere long for the land of our origin, ancestral 2. http://nextforautism.tumblr.com/post/161964350534/its-fathers-day-so-what homes that were left under sad circumstances. We also retain a 32 April 2019 • EP Magazine | ep-magazine.com
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This article explores Social Security’s Ticket-to-Work program, a suite of services designed to help people with disabilities prepare for, obtain, maintain and increase paid employment.
MAKE DISABILITY BENEFITS WORK FOR YOU BY ALEXANDRA BAIG, MBA, CFP®
he key to obtaining Social Security Disability Benefits, whether Supplemental Security Income (SSI) or Social Security Disability Insurance (SSDI) is providing conclusive evidence that you cannot earn more than $1,220 (2019, $2,040 if you have blindness) working at any under any circumstances. Particularly for people who have autism spectrum disorder (ASD), behavioral health challenges or other more invisible disabilities, this can be hard. It can involve filling out a whole wad of forms, making multiple visits to a field office and waiting for several years. Because your whole eligibility hinges on the fact that you can’t work, it’s hard for some people with disabilities to 34 April 2019 • EP Magazine | ep-magazine.com
believe that the Social Security Administration (SSA) actually wants them to work. I’ve heard it on good authority that this is true from a long time Social Security field office specialist who is also the parent of a young adult with a developmental disability. When you think about it, it makes sense. If you are only receiving benefits, you are drawing down system resources. But if you work, even if you are putting money back into the system as well as taking it out. The SSA wants you to work. The SSA is very much aware that employment is not synonymous with self-sufficiency, although it is a step in that direction. They realize that going to work for the first time, returning to
a suite of services designed to help people with disabilities prepare for, obtain, maintain and increase paid employment. We also discuss several other significant Work Incentives that help people with disabilities keep their SSI and SSDI cash benefits, Medicaid and Medicare as long as possible, even as they increase their earnings from work. The T i c ke t - to - Wo r k used in conjunction with other Work Incentives provides a robust safety net. Everyone who is on Supplemental Security Income (SSI) because of disability or Social Security Disability Insurance (SSDI) has a “ticket.” You used to get an actual paper ticket in the mail. Now, whatever agency you chose to assign your ticket just looks you up. All ticket services are free to you, paid for by Social Security. You can assign your ticket to either your state’s Vocational Rehabilitation Agency (the Vocational Rehabilitation Division of the Department of Human Services in Illinois) or to a private sector employment network (EN). You can find ENs near you by following this link:
grams, select a program, determine your class schedule, map out transportation and apply for public transportation pass, decide on and obtain any technology or study aids, pass the classes, obtain an internship, reach out to local veterinary firms and schedule informational interviews, create a targeted resume, locate practices that are hiring, practice interviewing, interview, follow up. Begin working part-time with a goal of increasing hours to full-time within 12 months. Your EN will report on your progress to Social Security. As long as you are using your ticket and making timely progress, Social Security will suspend any medical re-evaluation of your disabling condition. Timely progress measures depend on your career stage and IWP steps as well as how many months you have been using your ticket. For instance, in general, by the end of your first 12 months using the ticket, you are expected to achieve one of the following milestones: • Worked for at least 3 months at the Trial Work wage level, which is $850/month for 2018 • Completed your GED or obtained a high school diploma • Completed 60% of a full-time course load in an academic or vocational training program • A combination of the above Within the 13-24 months of usage, you are expected to achieve one of these milestones: • Worked for six months at or above the Trial Work wage level • Completed 75% of a full-time course load • A combination of the above Within the 25-36-month period, you are expected to: • Work for nine months of work at the Substantial Gainful Activity level ($1,180/month in 2018)
“Going to work for the first time, returning to work after a long time or increasing one’s work level significantly are all processes that take time, resources and require concurrent ongoing support if they are to result in success.”
KEEP COVERED: For some people with disabilities, the concern is not so much with keeping their cash benefits as with keeping their health insurance and support services through Medicare and Medicaid. There are several work incentives that let you keep each kind of coverage going even when cash benefits have stopped.
work after a long time or increasing one’s work level significantly are all processes. These processes take time, take resources, may not always result in success and will always require concurrent ongoing support if they are to result in success. This is, again, particularly true for people with ASD and others who may require very specific work circumstances to be successful. This article explores Social Security’s Ticket-to-Work program. Ticket-to-Work is
You then explore the ENs near you to find one that is a good match. EN services may include career counseling, skills and knowledge assessment, locating education and training opportunities, designing and requesting work accommodations, resume writing and interviewing coaching and job search and placement assistance.
ll EN’s help you to create an “Individual Work Plan” or “IWP.” Your IWP is a collaborative effort between you and your Vocational Rehabilitation or EN counselor. The plan sets out your particular work goals and the specific steps you need to be taking to reach them, as well as a time table. For example, you may want to work as a veterinary technician. The steps of your work plan might be to research accredited pro-
ep-magazine.com | EP Magazine • April 2019 35
Expedited Reinstatement if I must decrease or stop work again Complete an additional academic year of study within five years because my disabling conditions worsen, or my Complete a 2- or 4-year college program employer removes supports. Complete a year technical training program There are additional Work Incentives that apply to SSDI only. A combination of the above Time progress and the Ticket-to-Work can continue for 84 SSDI is an all-or-nothing benefit. As long as your countable earnmonths. During that time, Social Security and Medicaid work ings are below the SGA level, you get your full benefit. And you incentives will allow participants to keep cash benefits in certain don’t lose your benefits immediately when you reach the SGA situations where their work earning have not yet started or are level. Every time you earn above $880/month, you incur a Trial low, to keep Medicare for up to 93 months and to keep Medicaid- Work Month, but you continue to get your full SSDI benefit. When you have nine Trial Work Months with in a rolling 60-month span, funded services almost indefinitely. you have completed the Trial Work The Ticket-to-Work dovetails with Period. For 36 months after your Trial other Work Incentives. SSI is a variable Work Period has ended, called the benefit. Income you receive from Extended Period of Eligibility, you can another source reduces your SSI benestill get a benefit in any month when fit from the maximum of $771 (2019). your earnings are below the SGA level. However, income you earn through For some people with disabilities, work receives preferential treatment the concern is not so much with keepthrough the Earned Income Exclusion. ing their cash benefits as with keeping The first $65 that you earn ($85 if you their health insurance and support have no unearned income) does not services through Medicare and reduce your benefit at all. The remainMedicaid. There are several work der reduces your benefit by only 50 incentives that let you keep each kind cents for every one dollar you earn. If of coverage going even when cash my monthly gross income is $595, the benefits have stopped. Section first $85 has no impact; the remaining 1619(b) of the Social Security regula$510 reduces my SSI by only $255. If tions lets you keep Medicaid up to you worked and earned just below the earnings thresholds ranging from Substantial Gainful Activity level, you $27,000+ (Alabama and Illinois) to would earn $1,219/month from your KEY CONTRIBUTION: When you have a disability, it $66,000+ (Connecticut). In fact, if work and still receive $204 in SSI. can be an uphill road to put in place the supports you have high medical or service There is an additional work incentive and services you need. In can be even more difficult when you have an “invisible” disability expenses, you can even qualify for a under Social Security Regulation such as ASD. At the same time, you have skills and much higher individualized threshold. 1619(a) that will even allow you to energy to put to work in the community. This is for people who once had SSI. continue receiving a cash SSI benefit for working above the SGA level up to the point where the 50- Most states also have Medicaid Buy-in programs that allow anycents-on-the-dollar formula has reduced your SSI to $0. The one on Medicaid for Disability to keep it by paying a small premiStudent Earned Income Exclusion is an even better deal. Full-time um. Income eligibility requirements vary a lot by state, but in my students can earn up to $1,870/month up to a cumulative $7,550 home state of Illinois, for example, a worker can earn up to three times the Federal Poverty Level or more than $42,000 net of annually without reducing their SSI benefits. income and FICA taxes. Finally, workers can keep premium-free here are other work incentives that apply to both SSI and Medicare Part A for up to 93 months after going off SSDI and then SSDI recipients. Impairment Related Work Expenses pay a small premium to keep it going indefinitely. When you have a disability, it can be an uphill road to put in (IRWE) allow a worker to deduct from her/his earnings before those earnings are counted the cost of any item or service place the supports and services you need. In can be even more paid out of pocket, related to the disability and necessary for the difficult when you have an “invisible” disability such as ASD. At person to work. For example, if I earn $1,300/month from my the same time, you have skills and energy to put to work in the work, but my service animal costs $150, my speech recognition community. Social Security’s Ticket-to-Work and Work Incentives software $50 and my para-transit to work $100, then Social can support your successful transition from relying solely on govSecurity only considers my income to be $1,000. If my employ- ernment benefits to working, earning and becoming increasingly er makes certain accommodations for me and these can be quan- self-sufficient. tified, then these are considered Subsidies and also deductible before my earnings are counted. If I work successfully above the ABOUT THE AUTHOR: SGA level for a few months, but it is unsustainable, that is an Alexandra Baig, MBA, CFP® is a fee-only financial planner and an employment Unsuccessful Work Attempt. If my earnings from work vary a lot, network service provider who helps people with disabilities make the most of I can ask Social Security to consider the average over several government benefits and personal resources to support their work and life months. And even if my earnings above SGA are so stable that I goals. Alexandra has previous experience running L'Arche Chicago, an innovative residential community for people with and without disabilities. do lose eligibility for my cash benefits, I can regain them through • • • •
36 April 2019 • EP Magazine | ep-magazine.com
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Autism From Awareness to Acceptance BY LAUREN AGORATUS, M.A.
No one used to know what autism meant. Neurodiversity is the new mindset Far too many parents still feel they need to apologize for their Now it’s headline news. “Light it up blue!” child’s disability. Disability doesn’t define anyone, it’s just part of Everything from the CDC prevalence reports to who they are. There was a great post on The Mighty called “My how to include children with autism in schools. Children’s Differences Are Not Something to Apologize For,” Families affected by autism are not the only found at https://themighty.com/2017/01/accepting-autism/?fbclid=IwAR36fBG56HfWcGFones aware, now the general public is aware of 4PyNR1Pjin4jIZ_wYqEOzlfif4kJiH__znKwnuvbU According to the Autism Awareness Centre, “Neurodiversity is autism. It’s time we moved from awareness to the concept that humans don’t come in a one-size-fits-all neurologically ‘normal’ package. Instead, this recognizes that all variaacceptance. Autism is sometimes met with stigma and stereotypes. It is much easier to explain physical disabilities than an invisible disability, and this includes to the children themselves. There is no “typical” child with autism, as it is a spectrum disorder with varying abilities. As the saying goes, “If you’ve met one child with autism, you’re met one child with autism.” Even then, the child may change over time. A child who was initially non-verbal until age six and used American Sign Language to communicate can become a college student (like my daughter). 38 April 2019 • EP Magazine | ep-magazine.com
tions of human neurological function need to be respected as just another way of being.”1 Neurodiversity is now being seen as a biological fact, and individuals with autism and their families are asking others to accept and respect neurodiversity, not try to “fix” it. The book “Don’t Fix Me; I’m Not Broken: Changing Our Minds about Ourselves and Our Children” discusses the importance of unconditional love rather than focusing on deficits or brokenness. 1. https://autismawarenesscentre.com/un-adopts-new-goals-disabilities
Self-Advocacy is Key The Autistic Self-Advocacy Network (ASAN) has been instrumental in bringing the viewpoints of individuals with autism to the forefront, nationally. They use the motto, “Nothing About Us Without Us!” This means that any program or policy that will affect people with autism should include people with autism as stakeholders providing input, as is true of all disability advocacy. ASAN has exposed a variety of critical problems, such as organ donation discrimination for people with disabilities. They promote supported decision-making (“EVERYONE has the right to make choices”) for all individuals on the spectrum, to the best of their ability. Too often, it is automatically assumed that individuals with autism require guardianship, taking away their rights. ASAN has a useful toolkit, “The Right to Make Choices,” for families and another version for individuals with autism (see Resources). There is currently a debate regarding “person first” language such as individual with autism vs. some self-advocates who prefer identity first language such as “autistic person” (see Resources). Rather than guessing, it may be best to ask individuals with autism themselves which they prefer. Families and self-advocates can agree that we need to move from only awareness of autism to full acceptance. Acceptance does not mean “tolerance”, which implies putting up with something, but recognition and acknowledgment of the neurodiversity represented on the autism spectrum and among us all.
To spread information about autism acceptance, many organizations celebrate neurodiversity during April, which has been designated as Autism Acceptance Month. ASAN has a website with factsheets and resources about autism at https://autisticadvocacy.org/projects/community/autism-acceptance-month. The Arc also has an autism awareness month toolkit available at www.thearc.org/what-we-do/resources/toolkits/autism-acceptance-month. There are even Facebook pages, like Parenting Autistic Children with Love and Acceptance (www.facebook.com/ParentingAutisticChildrenWithLoveAcceptance), an international community that provides a safe space for autistic people to help parents learn from them, with the tagline, “Change the World, Not your Autistic Child.” The tagline for ASAN’s Autism Acceptance Month website is “Acceptance is an action,” which means that autism acceptance is an active process that requires both a shift in thinking and in action. This April, make that shift in thinking and action and sign the pledge for Autistic Inclusion at www.autismacceptancemonth.com/pledge ! • ABOUT THE AUTHOR: Lauren Agoratus, M.A. is the parent of a child with multiple disabilities. She serves as the Coordinator for Family Voices-NJ and as the central/southern coordinator in her state’s Family-to-Family Health Information Center, both housed at SPAN, found at www.spanadvocacy.org
AWARE AND ACCEPTING : RESOURCES PEoPlE fiRST lANGuAGE AuTiSTic SElf-AdvocAcy NETwoRK (ASAN) https://autisticadvocacy.org
ASAN Toolkit “The Right to Make Choices”
uNiTEd SPiNAl ASSociATioN
Identity First Language https://autisticadvocacy.org/about-asan/identity-first-language/
diSAbiliTy iS NATuRAl ThE miGhTy “My Children’s Differences Are Not Something to Apologize For”
NATioNAl RESouRcE cENTER foR SuPPoRTEd dEciSioN-mAKiNG
SElf-AdvocATES bEcomiNG EmPowEREd (SAbE) People First Language Manual www.sabeusa.org/wp-content/uploads/2014/01/People-First-Language-Manual.pdf
wRoNG PlANET Humor and Diversity in Autism https://wrongplanet.net
uNivERSiTy of KENTucKy Those of us DisLabeled (Chapter 3-Etiquette) http://www.hdi.uky.edu/Media/Default/Documents/DisLabeled.pdf
ep-magazine.com | EP Magazine • April 2019 39
a Call foR
Compassion BY KIMBERLEE RUTAN MCCAFFERTY welve years ago this month, the United Nations passed legislation to establish World Autism Awareness Day. Over the years, each day has focused on a specific theme – one year it was “empowering women and girls with autism,” another year “inclusion and neurodiversity,” yet another year “celebrating the ability within the disability of autism.” They have been important and necessary issues which need to be addressed. I’m proposing a new theme for this year, one that includes all who dwell within the extended autism community. 2019: “A Call for Compassion.” Over the years, as Autism Awareness Month has approached, I’ve written on a variety of topics. I’ve moved on from autism awareness (which, at least in my area of New Jersey, I believe we’ve definitely achieved) to autism acceptance, touched on moving from tolerance to celebration. Each year I’ve called upon those not within the community to see my sons and others with autism, to not just accept them, but embrace their differences and celebrate their accomplishments. I’ve asked for compassion, not pity when they (and I) have struggled, and I’ve seen such a positive shift in public perception since my eldest son was diagnosed fifteen years ago. At least in this area of the Garden State I’ve mostly encountered knowledgeable and welcoming souls – most of the time, when I chat with others about my boys, I am told about a neighbor, a friend, a child they’re raising who is similarly affected. I have only once or twice in a decade-and-a-half encountered negativity regarding my boys – a nasty look, a muttered epithet, aberrations I’ve quickly forgotten. I know however there is still much work left to do to educate others about autism, to enlighten them to the beauty, the struggles, and the accomplishments of our children and adults. I will never stop talking about mine and how proud I am of the men they are becoming.
Yet there’s still work left to do – and I believe it has to start with all of us. Over the years as a parent to two autistic children, one on the more severe end of the spectrum and one on the mild, I have read the work of many parents, autistics, and professionals who work with the population of people with autism. So much of the writing has influenced how I think about my boys, both autistics’ perspectives and those of parents as well. What’s been disturbing to me, however, is the huge divides across the community, schisms which don’t seem to be healing any time soon. Those who vaccinate. Those who don’t. Those who advocate autistic self-determination. Those parents of severely affected children who lament selfdetermination’s impossible dream. Those who regard inclusion as every autistic’s ultimate goal. Those who believe inclusion is not integral to their child’s progress or happiness. Those who claim neurodiversity is the only path for all. Those who claim a cure is the only sensible solution. What disturbs me most is the black-and-white nature of both people’s writings and opinions. Time and time again I see no room, no space for introspection regarding each autistic individual’s needs as well as parents of autistic children’s needs and wants. From some writers I see the opinion that all children should be cured. From some, they are all perfect just the way they are. Others advocate that adult children should always be included in the community; some state they have no interest in socialization and parents should be allowed to create the adult facility that suits them best. Some insist all autistics should be able to forge their own adult path. Often, parents grow increasingly frustrated when the needs of their severely autistic children transitioning to adulthood are ignored –
“Ultimately, each parent of an autistic child is the best arbiter of what’s necessary for their child, and their child only, if they can’t advocate for themselves.”
40 April 2019 • EP Magazine | ep-magazine.com
those for whom self-determination rests exclusively with what they someone else might come to understand your point of view as well. This is where compassion, instead of cruelty, can purchase want for lunch, or which DVD they’d like to see. But even more disturbing to me than some people’s one-size-fits- ground and grow. And if you cannot find any comall approach is the commentary I’ve seen on blogs, articles, and monality, if people’s positions are so Facebook pages. I’ve seen autistic people attacked. I’ve witnessed thoroughly entrenched, there’s no parents labeled as “ableists” and vilified. chance of comprehending a perI’ve watched son’s unique and intensely personal thread after experience with autism, what next? thread on I suggest, instead of engaging in Facebook elona discussion or written war with gate with hatred, someone who will never try to dismissal, and comprehend your point of view, hurt. and thinks they know what is It’s time for all best for you or your child, walk of us to stop away. attacking one another and start working toward eople push my buttons what I know is too, it’s the hazards of everyone’s underlybeing an advocate and a ing goal – happy, writer. But over the years productive, and safe I’ve tried to take that passion lives for all who dwell to prove my point and turn it on the spectrum, no into action, not an attempt to matter how mild or win over someone who doesn’t severe. want to even entertain my point And no, I’m not looking for one giant of view, someone who wants to kumbaya, people; just a little progress. influence my decisions for a Here is the truth. child they’ve never met. Unless you’re autistic, you don’t know Take that energy, and instead what’s it’s like to be autistic. research different living options Unless you’re raising a severely autistic for your about-to-be transitioning child with behavioral problems, you don’t adult. know what that challenging life is like. Spend a minute sharing your Unless you’re raising a mildly autistic story with a mother of a newlychild, you don’t understand the worries diagnosed child and offer practiand concerns that embody the loving of a cal suggestions to help that famihigh-functioning son or daughter. ly find peace. Unless you’re grappling with the diffiTry again to get your son pottyculty of making “entire life” decisions for trained. your adult child, ones that must last Consider volunteering for an decades after your death, you don’t comautism organization. prehend the enormity of this quest. Instead of engaging in vituperaUltimately, self-advocates only know tive, ultimately unproductive banwhat’s best for them. ter, take a moment and do someUltimately, each parent of an autistic WORTHY GOALS: “It’s time for all of us to stop thing kind for yourself. child is the best arbiter of what’s neces- attacking one another and start working toward It’s time we work, not against sary for their child, and their child only, if what I know is everyone’s underlying goal – happy, one another, but together in our productive, and safe lives for all who dwell on the they can’t advocate for themselves. unifying goal. We need to help one other, not break spectrum, no matter how mild or severe.” It’s time to heal. • each other down. ABOUT THE AUTHOR: So, I’m advocating this. At least try and understand an individual’s viewpoint that Kimberlee Rutan McCafferty, mother to two sons on the autism spectrum and diverges from yours. You might not agree with their ideas, but you an Autism Family Partner at the Children’s Hospital of Philadelphia (CHOP). Kim might learn something new about your beliefs from listening to is also the author of a blog at autismmommytherapist.wordpress.com. Kim’s others’ opinions. In stating yours passionately, but without venom, book Raising Autism: Surviving the Early Years is on sale on Amazon here.
PHOTOS PROVIDED BY KIMBERLEE RUTAN MCCAFFERTY
ep-magazine.com | EP Magazine • April 2019 41
But… She SAId ’BIrd’
A SucceSS Story oF eArly INterveNtIoN BY JACKIE SCHWABE
Yes, we would recommend Early Intervention. We learned how to play Zoe Kong. We learned there were lots of levels to the game. Every time we made it to the top of a level, every time we helped her learn a new skill, it felt like someone threw another barrel at us. Yet, she kept jumping over the hurdles and she kept climbing the ladders. 42 April 2019 • EP Magazine | ep-magazine.com
We already had two children, so we knew Zoe wasn’t doing things the way the older kids did. Yet, we weren’t expecting her to receive an autism diagnosis. Our journey started with dashed hopes and shattered dreams. Luckily, one of the steps in our journey was early intervention; early intervention allowed us to hope and dream again. But... She Said “Bird” We arrived at the clinic just like we arrived at all the previous appointments, hurried and hopeful. Zoe just turned two years old a few weeks earlier. This was maybe the twentieth appointment to help us figure out why she wasn’t doing things the way our older kids did them. For some time, we thought she had a hearing deficit. When tests proved otherwise, we were told she might have autism and we should get her evaluated. So, we arrived at the clinic to get her evaluated, just another step on the journey. She refused to walk, so I carried her on top of my fourth baby bump. You might ask why did I carry her on my pregnant belly? Well, not only did she refuse to walk, but would more than likely run directly into oncoming traffic if left to make her own decisions; so, while uncomfortable, not carrying her wasn’t really an option. We were a busy family, or at least I thought we were a busy family. Zoe’s two older siblings were about to start attending a new school in only a few weeks and her baby brother would arrive in less than a month. We had no idea how busy things could actually get. (Ah, to be blissfully ignorant again, sigh.) We were smart, we didn’t google autism. The stories you find on any diagnosis on the internet can throw an otherwise optimistic parent into a deep depression. We were just here to get this particular diagnosis ruled out. Truth be told, we thought maybe she just did things her own way. Yet, we didn’t want to leave that up to chance. Just in case she needed some support to be the best she could be, we wanted to keep trying to find out why she was a bit behind in her development. The appointment was very long. It took nearly two hours. I thought the appointment went as well as could be expected. Of course, I had no basis whatsoever on which to judge. The evaluator was able to get her to interact, play on the floor, and Zoe even said her first word, “bird.” So, I was surprised when we got to the end of the appointment and the evaluator said, “she is at least moderately to severely autistic.” What the what?
BE AN EARLY BIRD : EARLY INTERVENTION RESOURCES
cdc EARly iNTERvENTioN RESouRcES www.cdc.gov/ncbddd/actearly/parents/states.html
PARENT cENTER EARly iNTERvENTioN www.parentcenterhub.org/ei-overview
I said, “but, she said ‘bird’.” The evaluator handed me a stack of papers and gave me specific instructions on how to get Zoe enrolled in approximately 40 hours a week of in-home therapy. I didn’t hear most of what the woman said, to be really honest. I just kept thinking “she said ‘bird.’”
She Might Never... After Zoe was given an autism diagnosis, I dropped her off with her babysitter and I went to my office. I was so overwhelmed. I couldn’t do anything other than cry. Of course, I was like 100 months pregnant, so some of it could have just been hormones. Yet, I kept thinking of all the things that she might never do; knowledge provided courtesy of the ever-so-tactful evaluator. I guess I was listening a bit when the evaluator debriefed me earlier, but I might have heard more of the “she might never” parts than the “she might” parts. Perhaps the evaluator was trying to keep our hopes down, so we didn’t get too optimistic about treatment. If that was the goal, she achieved it with flying colors. I mean really, who wants to literally take hope from a parent? Doesn’t seem right. The evaluator told us how Zoe may never talk much more than she was now, that she might never look us in the eye, that she might never fall in love, that she might never move out, that she might never have children of her own and so many, many, many more things she might never do. We walked in the clinic hopeful, and we left with nothing but dashed hopes and shattered dreams. Luckily, our family isn’t the type to back down from a challenge. After some time to adjust to the new diagnosis, we began to do our own research and to read the materials provided by the evaluator. As we read literature on different evidence-based therapies, we learned that early intervention was known to turn some of the “she might never” statements into “she might, just differently” statements. It was on like Donkey Kong.
On Like Donkey Kong... There is no easy way to describe what it is like to have your hopes dashed and your dreams shattered. It is just as difficult to describe what it feels like when the flame of hope is ignited again and begins to burn deeply, and brightly. That is what learning about early intervention was for us, a flicker of hope. That is all we needed, just a flicker. Early intervention is most commonly used to describe the services and supports that are available to babies and young children with developmental delays and/or disabilities. Sometimes, children who receive an autism diagnosis are referred to Applied Behavior Analysis (ABA) Therapy services. The evaluator, the one that we initially were so frustrated with, had referred us to ABA Therapy the day we received the diagnosis; we were just unable to hear all the details during the initial shock of the diagnosis. ep-magazine.com | EP Magazine • April 2019 43
ABA Therapy was very intensive for Zoe and the entire family. It was up to 40 hours a week of in-home therapy. There were up to six therapists on her case at any one time. We had a lead therapist, a Board Certified Behavior Analyst (BCBA), and a Clinical Director that we also met with frequently. There were weekly team meetings that we were expected to not only attend, but to actively participate within. The team meetings were where we listened to and learned about her plan of care for the week. When the therapists were not in our home, which seemed like a rare occasion, our entire family turned into mini-ABA therapists. This ABA thing, it was harder than Donkey Kong! Honestly, it might have been the hardest thing we have had to do as a family up until this point. Sometimes it felt like we were playing with a video game controller that wasn’t configured as expected. The jump button might result in Zoe sitting. The right joystick might turn her left. Everything we did in ABA was to help our little person be her best, but her best was going to be a different game that no one had ever played yet, maybe we should call it Zoe Kong.
Learning to Play Zoe Kong
I was trying to find some witty way to say, heck yes, but I was at a loss for witty words. I am probably at a loss for words because of how significant the results were for our daughter and our family. When we started our journey in 2013, our daughter could only say the word ‘bird.’ She didn’t interact with others, she nearly didn’t talk, she wasn’t toilet-trained, and there were a host of other things she did not do. Now, some 6 years later, she has learned more skills that I can write about here. She can do more things than she cannot. Her brothers and sisters are amazing little humans that love her unconditionally and protect her and others that seem to struggle with the status quo. So of course, this isn’t exactly a fairy tale ending and she didn’t come out of the story without a diagnosis. There are things she is still trying her best to learn and other things that she may or may not figure out. And no, she isn’t like anyone else, she just Zoe … but Zoe is pretty great. I can tell you without a single doubt in my mind, that if we had not found her the early intervention services she needed, the world would be missing out on all that is Zoe. I’m not sure if she would talk much. I’m not sure if we would know she could read. I’m not sure if she would let us hug her and give her good night kisses. What I am sure of is that she does all of those things now and I am filled with awe daily at what she can do. All of this because we changed our thinking from “she might never” to “she might.”
Zoe cAN do more thINgS thAN She cANNot.
Zoe didn’t do things the way her older siblings or her baby brother did things. Yet, when we first started the journey with her, we were told of all the things she might not be able to do. What we were not told was about what she might do, or what she might do exceptionally. While Zoe didn’t do things the way her older siblings did, some things she did exceptionally well and even exceeded their abilities. While she didn’t have a lot of luck with putting words together into a sentence that we could understand, she had no problem reading books her sister, who is 6 years older, could read. The first time we walked by her reading her sister’s chapter book out loud was quite a day. It was kind of like finding a bonus room in Donkey Kong. It was hard to find, but really fun to watch and to play. Zoe couldn’t tell us what she just read, but by golly she was reading it. Things like toilet training took (um, is forever a time period?) longer than her peers. Yet, she could tell you every line in every movie she ever watched or listened to from the other room, or somehow watched from a past life or something. In fact, she would correct us if we said a movie quote incorrectly. If you paid attention when she quoted the movie line, you would be able to understand a bit more what she was trying to say. Often, she would repeat the movie line that corresponded to her feelings; if there was a sad part, when she was sad, she would repeat the movie line. One of our favorites lines was when she would say, overly adult and sultry, “You can tell a lot about a woman by the contents of her purse.” It’s a quote from The Incredibles. She used it out of context all the time, but it was always somehow perfect and hilarious. So, while most kids playing Donkey Kong would jump over the barrels, Zoe would probably try to read the label on the outside or stack them all up in a corner. Zoe wasn’t like most kids, but it turned out that none of our kids were like most kids. All kids are unique and wonderful and playing their own game. We wouldn’t have known that if Zoe didn’t receive early intervention services. 44 April 2019 • EP Magazine | ep-magazine.com
Would We Recommend Early Intervention?
Making it to the Top of the Ladder So… yes, we would recommend Early Intervention. We learned how to play Zoe Kong. We learned there were lots of levels to the game. Every time we made it to the top of a level, every time we helped her learn a new skill, it felt like someone threw another barrel at us. Yet, she kept jumping over the hurdles and she kept climbing the ladders. She did that because she had a great early intervention team. Our journey started with dashed hopes and shattered dreams. Luckily one of the steps in our journey was early intervention; early intervention allowed us to hope and dream again. Zoe’s story is a success story. We hope Zoe’s story can either give you hope or encourage you make a decision to start early intervention for your child.• ABOUT THE AUTHOR: Jackie Schwabe is CEO of Mindlight, LLC. She is a Certified Caregiving Consultant and Certified Caregiving Educator. She received her BA in Management Computer Systems from the University of Wisconsin -Whitewater and her MBA in Technology Project Management from the University of Phoenix. She has been active in the area of healthcare integration, healthcare IT, telemedicine, product development, and product management for over 20 years. She has been a cross-sector, cross-discipline leadership practitioner her entire career. Jackie wakes up motivated to help others. Her mission, to provide the tools, opportunities, and connections people need to be their best self. A mother of four children — one with autism — she often says different is not less and communication happens in more ways than verbally. She co-founded MindLight, LLC as a way to technologically help caregivers.
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INSIGHTS ON INCLUSION FROM A PARENT, ADVOCATE & FOUNDER BY KIM HUMPHREY AND SEAN LUECHTEFELD care field to begin Community Connect. It was time to bring lots of families together with a common passion of supporting a quality life for adults with developmental disabilities that were receiving Home and Community Based Services. ISE: What are some of the kinds of activities Community Connect Maine engages in? What resources does it provide for parents in Maine? KH: In 2015, we obtained a small grant to do an advocacy training for 10 people to be timed with the comment period of the proposed rule change that I mentioned a minute ago. The advocacy training was to prepare the families to do a media event. We had INCLUDED. SUPPORTED. EMPOWERED.: Is it safe to say that your personal experiences helped lead you to start Community anticipated the rule change would be in May, and so we had identified 10 people to participate in a press event, who were then Connect? KIM HUMPHREY: That’s an understatement! For years, I had trained by an advocacy consultant, Shenna Bellows. Shenna is now experienced system changes for my son’s programs. I would share a State Senator here in Maine, by the way. However, it took several months for the final rule to come out, my story one-on-one with people in the system, and then I would listen to what they said about their experiences in the system. so while we waited, we did more outreach and trained and educatWhen we each understood the other’s perspective, we had often ed more people. Other statewide organizations joined collaboratively in the effort to educate families about the issue. Nine months had enough information to solve the problems we were facing. I believed this would work on a population level as well. The col- and four trainings later, the final proposed rule came out and a lective wisdom of people can improve systems. I knew this from public hearing date was set. During the public hearing, our trained my professional background, which was in public health. So, I family members did a press conference. By the end of the public comment period, DHHS reported that 600 public comments tended to think in terms of communities and systems. had been submitted about the rule—a record number. In Fortuitously, my first job after college was as an R E S O the months that followed, DHHS pulled the rule. AmeriCorps VISTA volunteer. I was trained as a comL XP ISE: That’s amazing! Is that a typical approach you munity organizer and youth advocate. I was pleasall take toward mobilizing advocates to make a difantly surprised to learn how quickly people can ference? organize themselves and make improvements to KH: Well, we take a lot of different approaches. their communities. If people feel passionate about The mission of Community Connect Maine is to consomething, if people share that passion in common OP nect families, caregivers and communities to raise the with others and if they are connected to resources, M E N TA L standard of care for people with developmental disabilithey can collectively make a difference. That knowledge ties and their families. We connect people within and and the experience of being a VISTA certainly helped. Then, in 2014, I learned the Department of Health and Human between communities by having them join our network that now Services (DHHS) proposed a rule that I believed would be detri- includes over 3,000 people. And we do whatever will work to help mental to about 4,000 adults with disabilities receiving services. us achieve our vision. ISE: So how can someone get involved? That was my cue to transition from a job working in the health
SAB I L I T I E
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•D E V E
Editor’s Note In Part 2 of our conversation with Kim Humphrey, founder of Community Connect Maine, the Included. Supported. Empowered. team learns more about the advocate behind this incredible group of parents committed to opening up opportunities for inclusion and empowerment through community support, not only for their own children but for people of all ages and abilities. Part 1 of our conversation appeared in EP Magazine’s March 2019 issue.
KH: There are a ton of ways. They can join an ongoing advocacy effort we’re leading, join our closed Facebook group (www.facebook.com/groups/communityconnectmaine) or follow our public Facebook page (www.facebook.com/CommunityConnectCollaborative), join an inperson regional group, start a new regional group or connect an existing group to our network, and more. Once they’re tuned in, people can use Community Connect Maine to discuss topics of interest, build friendships, express what matters to them most via surveys and conference calls, and take advantage of learning opportunities available through our network. We also have several partners we work with that
“I was pleasantly surprIsed to learn how quIckly people can organIze themselves and make Improvements to theIr communItIes. If people feel passIonate about somethIng, If people share that passIon In common wIth others and If they are connected to resources, they can collectIvely make a dIfference.”
THE GIFT OF LOVE: Kim Humphrey celebrates her birthday with Daniel; “To help Daniel obtain the opportunity to learn new skills and to communicate better, I have had to push through my own fears to expand my skills and the ways I communicate. Healing him has been healing for me. Knowing that these efforts come out of the bond of love from mother to child gives me a greater appreciation of how strong love can be.”
I would encourage people to get connected with. In particular, I recommend people join the Maine Coalition for Housing and Quality Services (www.maineparentcoalition.org), which offers monthly educational presentations and is a founding organizational partner of Community Connect Maine. I also encourage people to get involved with another of our organizational partners, Disability Voters of Maine (www.facebook.com/DisabilityVotersMaine). ISE: Besides getting involved with Community Connect Maine, what advice would you offer parents of children with autism and other intellectual or developmental disabilities—here in Maine or anywhere else in the country? KH: Have confidence in your story. The experiences of families traveling this road is rich with wisdom. People not familiar with it need to hear them, to understand, to learn from you. Be open to the idea of new opportunities for your children. Be open to the possibility of the growth of a more accepting society. Be a part of the collective voice that raises standards of care and quality of life
PHOTO COURTESY SEAN LUECHTEFELD
for the disability community. ISE: It sounds like being Daniel’s mom has led you on a long and winding—but inspiring—journey. Is there anything else about that journey you want to share? KH: To help him obtain the opportunity to learn new skills and to communicate better, I have had to push through my own fears to expand my skills and the ways I communicate. For example, I used to be too shy to introduce myself to a conference speaker or
ask questions in large groups, but now I can do it. Healing him has been healing for me. Knowing that these efforts come out of the bond of love from mother to child gives me a greater appreciation of how strong love can be. ISE: No better way to end this conversation than with that. Thank you so much for sharing your insights and experiences! • ABOUT THE AUTHORS: Kim Humphrey is Founder of Community Connect Maine. She can be contacted at [email protected]
Sean Luechtefeld is Communications Director for the ANCOR Foundation and its Included. Supported. Empowered. campaign. He can be contacted at [email protected]
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the reemergence of the vaccIne debate BY SOPHIA CHRISCO
introduction There has been a recent measles outbreak in several states, due in part, to the vocal anti-vaccine movement. Vaccines have been described as "the tugboats of preventive health.” A new report from the World Health Organization (WHO) estimates that 20.3 million deaths have been prevented by the measles vaccine between 2000 and 2015. It's an incredible achievement for public health. In fact, thanks to vaccines, many of us have forgotten how deadly measles can be. Exceptional Parent assigned this article to an aspiring young microbiologist and High School senior, Sophia Chrisco, in the hope it will reinvigorate the conversation about the myths and misconceptions about the safety and efficacy of vaccines. -- Rick Rader, MD Editor in Chief, EP Magazine
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If you played board games growing up, or play them with your children today, you’re likely familiar with Milton Bradley’s colorful game Candyland. While many of you enjoy playing comfortably, its original purpose was to cater to ill children who may not have mobility, or playmates. The creator, Eleanor Abbott, could attest to this as she developed it in the San Diego Hospital while recovering in 1948 from paralytic polio, an illness that was once widely known to the general public but today isn’t well known, because of modernized vaccines.
nfortunately, there are maladies that once claimed the lives of up to 15,000 that are now seen again in countries where vaccines once prevented them. Why has “vaccine hesitancy,” been called one of the biggest threats to worldwide health by The World Health Organization (WHO)? With new viral strains popping up all around the world, what does the future of immunology hold? The vaccine conspiracy dates back to its conception, as Physician Edward Jenner’s anecdote for smallpox was called “ungodly,” by the English Clergy back in 1792. Today, a concerning number of parents have been misled by theories circulating the internet and promoted by their favorite celebrities. The most common adversary is the supposed link between the MMR (measles, mumps, and rubella) vaccine and autism. This was suggested by former British gastroenterologist, Andrew Wakefield in Lancet (1998), who conducted unnecessary lumbar punctures and colonoscopies on children with ASD. However, a 2004 report of the Sunday Times uncovered Wakefield’s financial instability, revealing the purpose of his study. Wakefield was being paid off by a small group of solicitors, who believed the two were connected. When all but two of his co-authors retracted their findings, Wakefield was investigated by the British General Medical Council, where he was charged with twelve counts of abuse of disabled children and four counts of dishonesty. He lost his license to medicine on January 28th, 2010, but stands by his work. Yet, no scientist has been able to replicate his results. Despite the scandal, some continue to see Wakefield as a tantalizing figure. The American celebrity Jenny McCarthy has arguably been one of the most damaging celebrity influencers of public health through her anti-vaccine campaign. She’s a supporter of Andrew Wakefield’s theory, and has a son diagnosed with autism, epilepsy, and chronic gastrointestinal disorders. McCarthy does claim she was concerned about the possible link before the procedure, but her former husband insisted the son received treatment. Some of Wakefield’s supporters are as high-profile as President Donald Trump, who in 2014 tweeted, “healthy young child goes to the
doctor, gets pumped with a massive shot munity believes these ailments are just of many vaccines, doesn’t feel good and part of childhood, and kids are just better off working through it. As a society, we are changes – Autism. Many such cases!” Celebrities can often be used as incen- mute to the lasting and sometimes deadly tives for the anti-vaccine agenda, and side effects of these bacteria. Some of they’re very powerful influencers in the these symptoms can preempt birth. When health field as a whole. As an example, in women catch rubella during their first the weeks preceding Earvin “Magic” trimester, they can develop what is known Johnson’s announcement of HIV, 68,000 as congenital rubella syndrome. This can calls were made to the CDC expressing give a child cataracts, heart disease, heartheir own personal concerns. Angelina ing deficiency, microcephaly, developmenJolie underwent gene testing for an tal delays and more. Polio, which attacks the spinal cord, increased risk of leaves 25-40% ovarian and of its victims breast cancer. In dead or permathe following nently paradays, there was lyzed. Still today, a 64% increase some American in women citizens rely on receiving BRCA “iron lungs,” (breast cancer 1 bodylength, and 2) exams. cylindrical You could cases, to survive argue that due to losing all autism diagnomotor function. sis rates are Some are left increasing, with broken ribs which is eviand bones locatdence of a vaced near the skull cine cover up. after bouts with Even so, it's SHAKY SCIENCE: Today, a concerning number of parents have been misled by theories circulating tetanus (lockhardly earththe internet and promoted by their favorite jaw) and pertusshattering, with celebrities. The most common adversary is the sis (whooping the advance- supposed link between the MMR (measles, cough). Those ments of aware- mumps, and rubella) vaccine and autism. recovering from ness and the increment of testing. A child on the autism hepatitis B are at increased risk for develspectrum has access to far-greater bene- oping liver cancer, and receiving your HPV fits than one with a specific challenge, shot will decrease your risk for cervical thus some parents and doctors will push cancer. Many of the illnesses I listed can for a diagnosis. It's important to take into lead to meningitis and other brain-related account that children have received these complications. Infections such as measles, shots for decades, some even date back to which is at a 30% increase, tend to damthe 1920s. This makes them bad candi- age your immune system for life. What doesn’t kill you, doesn’t always make you dates to be correlated with a recent issue. Others hesitate because of religious stronger. lifestyle choices, vegan or naturalist views, and some even believe vaccines can be ut not vaccinating your child only used for nano tracking, suppressing intelaffects your child, right? This is unforlectual ability, and mind control. The sectunately very wrong. One million peoond most common motive for vaccine ple at any given time are unable to hesitancy is the belief that they’re a viola- receive a vaccine safely. Babies under the tion of human rights. This movement is age of one, HIV/AIDS victims, and those very popular in Texas, where nearly undergoing chemotherapy are just some of 45,000 children are exempted for non- the unprotected. Therefore, they rely on us medical reasons every year. to immunize ourselves, because viruses A small portion of the anti-vaxxer com- cannot survive without a host. This has
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been coined “herd immunity.” Even if you don’t normally come into contact with a vulnerable person, germs can sometimes project six feet away from the individual and last on surfaces for several days. Measles, the most contagious virus, can survive for up to two hours airborne; if unprotected, you have a 95% chance of developing symptoms. Another troubling outcome could be viral mutation. Bacteria are the most rapidly evolving species on the planet, particularly ones made up of RNA; because they lack the DNA repair mechanisms found in animals. This greatly increases the difficulty of making a consistent shot. When a virus made up of DNA replicates inside the host cell, it tricks it into proofreading the DNA code of its offspring. RNA does not possess this stability and often reproduce differently coded viruses, possessing the ability to affect its surroundings dissimilarly. We witness this yearly with the thousands of variations of influenza that emerge, enteroviruses that are related to polio, and the number will only continue to grow. The job of a disease specialist is to try to forecast the future of viral behavior, in hopes of staying one step ahead. One of the ten threats for global health that the WHO listed for this year was the worldwide influenza pandemic—where currently 144 countries are in effect. A major concern for future outbreaks is the possible genetic recombination between swine, bird and human flu types, since poultry and pigs are typically kept in close quarters. Since flu’s common reservoir are waterfowl, scientist in the Mai Po Nature Reserve in China carefully monitor the native species excrements for new strains of influenza. Other coun-
tries are starting to do the same. When someone falls ill, either with what was listed, or other more trivial ailments, our first response is usually to take an antibiotic. While antimicrobials are one of modern science’s greatest accomplishments, our time is running out. These diseases, such as some strands of tuberculosis, gonorrhea, MRSA, staph, e.coli, and the enteroviruses mentioned earlier are often termed “superbugs,” because they generally cannot be treated. It is expected more will develop the same effect, or, lack thereof, if we do not cut back on our usage. Thankfully, drastic actions are taking place globally. Across the world, antibiotics were long used as a growth booster for livestock, but the European Union banned them a decade ago, and US citizens are more educated on its harmful effects than ever before. New antimicrobials, such as Plazomicin, have recently been developed in hopes of replacing what we use now to keep up with the ever-changing characteristics of pathogens. Most scientist agree that getting all countries on board with these developments is key. WHO and other major health organizations organize contagious illnesses by categories or numbers, the most highly fatal are labeled as category A or risk group four. We are currently in the first human trial of Ebola vaccine. As of December 2018, 37,000 people received immunization in The Democratic Republic of Congo in the midst of the outbreak. Doctors are trying a new strategy, called “ring vaccination,” which boosters only the people who have come into direct contact with a sick individual, rather than blanketing it across the country. These health workers are facing
“we are turning back time by excluding vaccines from childhood. diseases that were once considered eradicated have resurfaced because we’ve opted out. without keeping ourselves protected and up to date, our new immunization endeavors are unattainable.”
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serious hazards such as rebel groups, malaria and other vector borne diseases, thus this new method can save them valuable time. In the control groups where the friends and family of the victim were immunized immediately, zero cases came from that individual. Weak medical infrastructure plays a major role in an epidemic. Without access to clean water, medicine, and sometimes basic education can make containment nearly impossible. The US and other medically-advanced nations have had risk group four pathogens leak into the public, more recently than you’d expect, but they’ve been quickly contained. The anthrax leaks of 2001, the Ebola infected hospital patient of 2014, and the spill over of hendra virus in northeastern Australia during 2016 are examples of potentially catastrophic epidemics that were controlled by modern medical practice. This isn’t to undermine the devastating effects these strains can induce, but it provides hope for some less fortunate demographics. The Global Conference for Primary Health Care was held in Kazakhstan in October of 2018 to make plans to improve programs in less developed countries.
accines are the most cost-effective way of protecting yourself and others. They prevent two to three million deaths every year. However, we are turning back time by excluding these from childhood. Diseases that were once considered eradicated have resurfaced because we’ve opted out. Without keeping ourselves protected and up to date, our new immunization endeavors are unattainable. Miscommunication is largely responsible for hesitation, so spread awareness and enlighten others who may believe the misconceptions. When you vaccinate your child, you’re not only saving them from disability and even death, you’re protecting others as well. You may be saving a life.• ABOUT THE AUTHOR: Sophia Chrisco is a high school senior attending The Ivy Academy in Chattanooga, Tennessee.
KEY CONSIDERATIONS FOR SPECIAL NEEDS FINANCIAL PLANNING
SEEING THE BIGGER PICTURE L ong-term special needs financial planning can be challenging, especially with the complex legal and governmental issues surrounding disability. The wrong decision might create a tax burden or render a loved one ineligible for government benefits. However, by properly planning, understanding government benefits, and utilizing the right legal instruments, you can help ensure your loved one enjoys the quality of life they deserve. Thinking ahead: What type of future do you envision for you and your loved ones? How can you be sure your plans are carried out as intended? Just as you save and plan for your retirement, you can strategically map out your vision for the future by using wills and letters of intent. • A will is a legally binding statement of your wishes. Living wills become especially important if you’re unable to communicate your wishes. • Although not legally binding, a letter of intent is a written document that serves as a personal roadmap of your wishes and expectations for whoever assumes responsibility for your loved one. Since both wills and letters of intent are living documents, it’s important to update them regularly because your needs, wants, and vision for your loved one’s future may change.
NAVIGATING GOVERNMENT BENEFITS In addition to employer benefits, such as life insurance, health insurance, and retirement plans, your loved one may qualify for certain government benefits. Government benefits can be either means-tested or entitlements.
Means-tested benefits are available to those whose income falls below a certain level. A few of the most standard types of meanstested government benefits are: • Supplemental Security Income (SSI) is a federal program designed to help those who have qualifying disabilities or special needs. In order to qualify, an individual must have less than $2,000 in countable assets. • Medicaid is a means-tested benefit that provides health coverage to eligible individuals with disabilities as well as others. Many states have “waiver” programs that cover day care, residential, career, and other services. • Supplemental Nutrition Assistance Program (SNAP/Food Stamps) provides food assistance and has eligibility guidelines similar to SSI. Not based on income level, entitlements are available to anyone who meets the eligibility requirement. A few examples include: • Social Security Disability Insurance (SSDI) is a program designed for people with disabilities or special needs that have a work history and have contributed to Social Security, but have been unable to work for at least a year. You could also qualify for the Children’s Disability Benefit. • Medicare is a federal program that provides medical care to certain persons, including individuals with disability. As you can see, some government benefits are not dependent on the recipient’s income, but many of them are. Because of this, it’s important to strategically use the right tools, such as a special needs trust, to ensure your loved one receives a lifetime of support and care. The special needs trust acts as a receptacle for accepting money earmarked for your loved one with special needs. The proceeds in the trust can be used to pay for amenities that government programs fail to provide. Most importantly, assets held in the special trust are not counted when determining eligibility for government benefits.
TAKE THE NEXT BEST STEP Whether you've already started planning or are unsure where to begin, a specially trained financial advisor can help.• Financial Advisors are Investment Advisor Representatives of and offer securities and investment advisory services through Voya Financial Advisors, Inc., (VFA) member SIPC. Neither Voya Financial Advisors nor its representatives offer tax advice.
Helping people with special needs and caregivers plan for the future they envision
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New Jersey Law Seeks to Raise Disability Awareness, Acceptance and Understanding
BY LAUREN AGORATUS, M.A.
The state of New Jersey recently passed a law requiring that school districts include awareness of the accomplishments of individuals with disabilities as well as those who are LGBT (lesbian/gay/bi/trans) in school districts’ curricula. The Museum of DisABILITY History noted that individuals with disabilities are the largest minority group and have “made enormous social, political and cultural contributions to American life”.1 This change in what is taught to our students will reinforce the diversity represented in communities, the workforce, and our citizens. New Jersey Governor, Phil Murphy “believes that ensuring students learn about diverse histories will help build more tolerant communities and strengthen educational outcomes.”2 The law will ensure that schools “accurately portray... the political, economic, and social contributions of persons with disabilities and lesbian, gay, bisexual, and transgender people.”3 The only other, and first state, with a similar law is California. 52 April 2019 • EP Magazine | ep-magazine.com
WHY THIS IS IMPORTANT FOR STUDENTS WITH DISABILITIES Students with disabilities are more likely to be bullied than their typical peers. In addition, although students with disabilities make up 12% of the school population, they represent 58% of students experiencing seclusion and 75% of students subject to restraints.4 Some adults are modelling that it is ok to treat students with disabilities this way.
WHY THIS IS IMPORTANT TO LGBT STUDENTS Students from the LGBT population have the highest suicide rates. They too are subject to bullying and stigma. According to the Centers for Disease Control and Prevention (CDC) 27% of transgender children feel unsafe at school, 35% are bullied, and 35% attempt suicide.5 It is important to recognize that these two populations are not mutually exclusive. There is intersectionality of individuals with disabilities and LGBT people. According to RespectAbility, over 1/3 of LGBT adults also identify as a person with a disability.6 It is important for LGBT students and students with disabilities to see others like themselves represented in the school curriculum. By raising awareness of students with disabilities and LGBT students, schools will become more inclusive. Bullying will be
MORE TOLERANT COMMUNITIES : RESOURCES
NEw JERSEy bEcomES SEcoNd STATE To REquiRE SchoolS To TEAch lGbT ANd diSAbiliTy-iNcluSivE mATERiAl www.cnn.com/2019/02/01/us/new-jersey-lgbt-disability-curriculum-trnd/index.html
“NEw JERSEy’S lGbT EducATioN lAw PASSEd wiTh flyiNG coloRS buT iTS TouGhEST TESTS mAy liE AhEAd” - iNquiRER www.philly.com/news/columnists/lgbt-education-new-jersey-public-school-curriculumgovernor-phil-murphy-20190209.html
ALL-INCLUSIVE: New Jersey Gov. Phil Murphy signed legislation in February mandating that the state's schools include instruction on the contributions of LGBTQ people and people with disabilities. https://www.nbcnews.com/feature/nbc-out/n-j-governor-signs-lgbtq-inclusive-curriculum-billlaw-n965806
ThE NJ lAw https://www.njleg.state.nj.us/2018/Bills/S2000/1569_R2.PDF
reduced. School districts and their students will become more aware of the diversity of the school population. The law requires that each board of education develop procedures to address curriculum changes effective with the 2020 school year. The Museum of DisABILITY History is an excellent resource for schools, offering grade-level lesson plans on disability. Here are examples of what schools will find: ➢ Pre-K to Grade 3 | The units cover not being called “special”, disability at school, service animals, assistive technology, and living with a disability. ➢ Grades 4-8 | Lesson plans include information on advocacy, disability in the media, eugenics, law, prevention, “cures”, and sports participation. ➢ Grades 9-12 | Disability etiquette, self-advocacy, accomplishments, medical model, and more advanced information on the topics from earlier grades. For more information on lesson plans, supplementary resources on specific disabilities, and a bibliography, see https://museumofdisability.org/educational-resources/ •
SAfE, SuPPoRTivE, ANd iNcluSivE SchoolS ”Schools In Transition: A Guide for Supporting Transgender Students in K-12 Schools” http://assets.hrc.org//files/assets/resources/Schools-In-Transition.pdf
A PRAcTiTioNER'S RESouRcE GuidE: hElPiNG fAmiliES To SuPPoRT ThEiR lGbT childREN https://store.samhsa.gov/system/files/pep14-lgbtkids.pdf
ABOUT THE AUTHOR: Lauren Agoratus, M.A. is the parent of a child with multiple disabilities. She serves as the Coordinator for Family Voices-NJ and as the central/southern coordinator in her state’s Family-to-Family Health Information Center, both housed at SPAN, found at www.spanadvocacy.org
References 1. https://www.icsny.org/still-rare-museums-highlighting-historic-contributions-of-people-with-disabilities-to-american-life/ 2. https://www.cnn.com/2019/02/01/us/new-jersey-lgbt-disability-curriculum-trnd/index.html 3. https://www.philly.com/news/columnists/lgbt-education-new-jersey-public-school-curriculum-governor-phil-murphy-20190209.html 4. www.ucdenver.edu/academics/colleges/medicalschool/programs/JFKPartners/educationtraining/ Documents/CANDORestraint%20and%20seclusion%2012-9-2016.pdf 5. https://www.cdc.gov/mmwr/volumes/68/wr/mm6803a3.htm 6. https://www.respectability.org/2018/06/lgbt-pride-month-2018/
PHOTO COURTESY AP/JULIO CORTEZ
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It is okay to provide access and continuous use of two languages (American Sign Language and English) with the deaf child. One language will not compromise or diminish the other. Instead, the development and nurturing of an accessible, visual language (ASL) will concurrently reinforce the development of English.
THE USE OF A VISUAL LANGUAGE WITH THE CHILD WHO HAS A COCHLEAR IMPLANT BY J. FREEMAN KING, ED.D.
Author’s Note The following is the follow-up article to “Parents and the Hard of Hearing Child,” which appeared in the March 2019 edition of Exceptional Parent magazine hroughout the United States a significant number of deaf children are receiving cochlear implants, and also using a visual language such as American Sign Language. The children are being educated bilingually and reaping the benefits afforded by two languages, American Sign Language (ASL) and English. They are experiencing the best of both worlds.
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While some parents and professionals have reported positive experiences with cochlear implants, this does not necessarily suggest that the impact of deafness can be fully overcome by assistive devices; it is important to realize that the cochlearimplanted deaf child will continue to have special language learning needs and it is incumbent on the parent and professionals to consider the available research that best addresses those needs. Even with the cochlear implant, the child remains primarily a visual learner, and sound educational pedagogy indicates that one should play to the child’s strength, vision, as opposed to playing to his/her weakness, hearing. Research has shown that cochlear-implanted children with larger pre-implant vocabularies performed better in measures of language ability than did children who had smaller pre-implant vocabularies; this finding has important implications: 1) Parents considering cochlear implants must do whatever is necessary to increase their child’s vocabulary skills prior to the cochlear
implant and, 2) Considering the fact that deaf children can receive cochlear implants at ages 12 months or younger, that leaves very little time if parents are to teach language skills to their child before that time. Thus, based on the child’s strength, which is vision, a visual language, such as American Sign Language (ASL), continues to be the most supportable early communication option for deaf children. Parents who begin with a visual language and who encourage its continued use after cochlear implant surgery may be
helping their child with second language (English) development more than is realized. Studies have demonstrated that deaf children who use a visual language, such as American Sign Language, have language acquisition skills comparable to their hearing peers, and that the timing of first (visual) language development positively affects children’s abilities to learn a second language (English). These studies suggest that learning a first, easily accessible visual language provides dual benefits by: 1) allowing deaf children to recognize and figure out new material based on pre-
SUGGESTIONS FOR PARENTS OF THE COCHLEAR-IMPLANTED CHILD Research and common sense suggest that the following should be considered for the cochlear-implanted deaf child: 1. All linguistic input from birth should include visual input, auditory input, use of signs, gestures, facial expressions, voice. 2. Early accessible communication interaction between the child and parent is absolutely necessary for the child to acquire language. No matter how much hearing loss the child has, visual input assures the child’s early accessibility to communication and language. 3. Early accessible communication directly affects the brain wiring necessary for the child’s language development. Meaningful interactions from birth that are repeated and accessible result in the formation of “neural language connections” that stay in place. 4. There is a difference between acquiring a language and learning a language. A cochlear-implanted child exposed only to a spoken language, is not necessarily able to naturally acquire the language necessary to achieve native fluency that will ultimately lead to literacy in the English language. 5. All input from birth provides opportunities to see how the child responds to auditory and/or visual input. The idea is not to “choose a method for a child” but to allow the child let us know the best and most successful ways to communicate with him or her. 6. For deaf children who might be receiving a cochlear implant, “all input” from birth, including the use of signs, provides assured language input and an assured language base during the early months of life. A strong early visual language base can only help the child with continued language and speech development. 7. All input from birth provides time for parents to learn more about communication methodology possibilities and other issues related to their child being deaf without losing accessible language input.
vious language experience, and, 2) by reducing the increased load on the child’s working memory by allowing them to translate unfamiliar second language (English) into a more familiar first language. Research conducted in the neuroscience laboratory at Gallaudet University in Washington, DC, regarding the biological foundations of language, indicates that young deaf bilingual (ASL and English) cochlear-implanted deaf children are not harmed, delayed, or confused by early dual language exposure. These children not only achieve their language milestones in both ASL and English, they are also able to reach the same semantic and conceptual development as hearing monolinguals (one language users). For the cochlear-implanted deaf child, a visual language such as American Sign Language (ASL), is often withheld in the belief that it interferes with speech development. However, there is no evidence that using ASL with the deaf child inhibits or prevents spoken language development. In fact, proficiency in a visual language has been shown to positively influence spoken language development and the development of English literacy in the child who has a cochlear implant. uch research and suggestions, as outlined above, should come as a breath of fresh air to parents of cochlear-implanted deaf children, in that these parents are often given conflicting advice from professionals. It is okay to provide access and continuous use of two languages (American Sign Language and English) with their deaf child. One language will not compromise or diminish the other. Instead, the development and nurturing of an accessible, visual language (ASL) will concurrently reinforce the development of English. The two languages will be complementary and will lead to success in literacy and sociocultural development of the cochlear-implanted deaf child.•
ABOUT THE AUTHOR: J. Freeman King, Ed.D. is Professor, Deaf Education at Utah State University Logan, Utah.
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AthleteS LEADING THE WAY FOR HEALTH BY LYNN ERICKSON AND RENEE DEASE
It’s a typical, deeply-frozen March morning in the northeastern United States. Even seasoned Malborough, Massachusetts residents cozy up inside and only plan on making an outdoor trek to their vehicles and back. But when they glance out their windows, they might catch a glimpse of a familiar sight. Rain, shine or snow, Beth Donahue can be found jogging along with her yellow lab, Cooper. 56 April 2019 • EP Magazine | ep-magazine.com
hat dog is fit, let me tell you,” Beth, 28, and her mother Gina exchange a knowing look and laugh. Beth is the epitome of fitness. She is in remarkable shape and active every day doing exercise she enjoys – running with Cooper, leading an exercise class, or skiing with her father to name just a few. Her average daily diet might include an English muffin with almond butter, yogurt, fruits, almonds, salad with protein like chicken or turkey. To relax, she reviews YouTube videos of exercises she can employ or adapt for a weekly exercise class she leads. For some, it may come as a surprise that Beth is a Special Olympics athlete of more than 20 years. Beth competes in soccer, skiing, track and field, and softball. Beth is among the growing throng of Special Olympics athletes and families who are embracing a healthy lifestyle in all facets of life and influencing others
PHOTOS PROVIDED BY STEPHANIE CORKETT/SPECIAL OLYMPICS
FOLLOW THE LEADERS: (Opposite page) Beth and Gina lead the athlete warm-up at the start of the Special Olympics Massachusetts’ State Soccer Finals; (Above, clockwise) Beth discusses the positive impact of sports with a group of Boston Bruins' players at the Face-Off Gala (and then goes off script and gets them all up on stage to do Zumba); Twenty athlete leaders from Benin, Botswana, Côte d’Ivoire, Kenya, Malawi, Mauritius, Namibia, Nigeria, Rwanda, Senegal, South Africa, Tanzania Zambia, and Zimbabwe train as Special Olympics Health Messengers in 2018; Beth and Gina pose after completing the 7-mile Falmouth Road Race; Physical fitness is a key part of the Special Olympics' mission. Additional fitness activities beyond sport are improving athletes’ sport performance, health and lives. within their community to do the same. “Living a healthy lifestyle makes me feel empowered and self-confident,” Beth shares. “I can spread that to other people, too. I encourage people to do something active every day. If I can do it, anyone else can, too.” Humility pours out of Beth, but this leader’s accomplishments are extraordinary. Here are just a few of them: Beth is in the midst of working with Boston Bruins Foundation to film a series of fitness training tips. She learned American Sign Language while at a Transitional Scholars program at Mass Bay Community College and now signs “Support your local athlete” at the end of her presentations to Special Olympics supporters.
Beth and Gina trained athletes heading to the 2018 Special Olympics USA Games in Seattle. They both taught inclusive Zumba classes in the community for eight years and began an adaptive bootcamp course in 2018 that has been very well received. Beth works two jobs and is preparing to move out on her own, navigating around the Boston area via train. She also spoke at the NIRSA sports conference to more than 2,000 people about the impact of Special Olympics Unified Sports to expand the idea of inclusion and community through sports. But if you ask Beth and Gina what makes them feel proud, it is not their accomplishments, but the accomplishments of others
they have worked with the past eight years. “It hits me how far some of our friends have come,” Gina says. “We have been able to see positive change through our adaptive bootcamp course. Within a matter of four to six weeks, we are observing some clear differences. When I look in the mirror and see all 15 young adults doing a shoulder press above their heads with all of the confidence that anyone else would have, it really is a good feeling. People have more strength when they’re doing exercises and for everyday activities.” It is well documented that people with intellectual disabilities are less active than the general population. This is not due to their disability, but the lack of access to fitep-magazine.com | EP Magazine • April 2019 57
ness education and opportunities that fit their needs. Special Olympics’ mission is to provide sports opportunities for people with intellectual disabilities. In order for athletes to truly perform at their best, they must be fit and healthy. The reality is that some Special Olympics athletes only practice their sport once a week, and competition seasons are only about three months long. This leaves a large gap throughout the year where athletes live sedentary lifestyles, putting them at risk for obesity, osteoporosis, high blood pressure, and diabetes.
he best way to find a solution to the lack of access to fitness education and opportunities is to have the solution driven by the people who face these challenges daily. People with intellectual disabilities, like Beth, are guiding communities across the world toward solutions. The Special Olympics Health Messenger program, now with more than 160 individuals trained globally, was developed to address this need. In order to create more effective public health programs, improve health systems and engage communities to
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support the health of people with intellectual disabilities, people with intellectual disabilities must have leadership roles. After training with Special Olympics personnel, the trained athlete-Health Messengers return home with increased confidence and a clear understanding of the steps involved to lead activations, raise awareness, and mobilize and influence community members and key decisionmakers to be more inclusive of people with ID. Beth – who was trained as a Health Messenger in 2018 - and her mom Gina are examples of the success that Health Messengers are recording across the world. “We had a new friend start Zumba classes with us a few years ago. She came in the back of the class and cried. She was overwhelmed, unsure of where she fit in and feeling uncomfortable,” Gina continues. “Over the course of a few years, we became closer and she became more comfortable. I was looking at her doing sit ups at bootcamp last night and it really struck me. ‘Okay, we’re making a change one step on a time.’ We try to give people new ideas of how they can be strong and new ways to be independent. Our friends at class have the
opportunity to explore new skills, feel included, and feel like they are part of the community. We didn’t know what to expect with this class when we changed from a once-a-week Zumba class, but it has been wonderful. Young people with disabilities don’t always have a chance or the setting to push weights over their heads or do pushups.” Gina, with her background as a professional fitness trainer, and Beth, make a dynamic duo. With individuals like them at the helm of Special Olympics Inclusion Revolution, there is much-needed change happening in many pockets of the world. But stats show that more work is needed. If you happen to live in the Boston area, join Beth and Gina for a great workout. • Join Special Olympics’ “The Revolution is Inclusion” to make a difference in your community today. ABOUT THE AUTHORS: Lynn Erickson is a manager of health communications for Special Olympics. Renee Dease is an Olympics athlete and the Healthy Athletes coordinator at Special Olympics International.
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
60 10 QUESTIONS TO ASK CHILD CARE PROVIDERS FOR YOUR CHILD WITH SPECIAL NEEDS 61 SUPPORT FOR FAMILIES: THE ESSENTIALS PUZZLES & CAMO
62 CHANGING TOGETHER By Shelly Huhtanen
10 QUESTIONS TO ASK CHILD CARE PROVIDERS FOR YOUR CHILD WITH SPECIAL NEEDS
inding a great child care provider is like finding a new member of your military family. After all, your child will spend a significant amount of time there each week, and what happens at daycare can impact what happens at home. This connection makes it even more important for families when looking for a child care provider for a child with special needs. The military services offer quality, affordable child care options for families with special needs. Check for resources at www.militaryonesource.mil/family-relationships/special-needs/special-education-and-
In the end, everyone – you as a parent and the child care provider staff as a whole – wants what is best for your child. By asking these questions, you can make sure they and you are ready to make your child’s time at their day care or other child care program a success. And, if you ever need extra help, you can always reach out your installation EFMP Family Support staff or to the Exceptional Family Member Program Resources, Options and Consultations, EFMP ROC, specialty consultants with Military OneSource at www.militaryone-
Here’s a list of ten questions for you to ask potential care providers in your community before enrolling your child with special needs in a new child care program. 1. “Is your child care program nationally or regionally accredited?” With an accredited child care facility, you’re more likely to get the best possible care for your child. 2. “Do you hold regular staff training or educational opportunities?” The answer to this question not only tells you how highly the child care provider values its staff, it also offers a glimpse into how receptive staff will be learning new ways to care for your child and their special needs. 3. “What is your current staff-to-student ratio?” The more staff a child care provider already has, the more likely it is your child with special needs will more easily fit in with the current classroom environment. 4. “How do staff discipline children, if necessary?” Look for providers who would reinforce the discipline strategies you use at home, in order to create a more consistent and predictable experience for your child. 5. “What are the age ranges of children at your program?” If you know you’re going to stay in an area for a while, do your best to pick a child care provider that will be able to take your child on for the length of your stay at
this latest PCS. 6. “May I see your Parent Handbook or a copy of your policies?” Reading through a provider’s Parent Handbook or policies will tell you how organized a child care provider is, what situations may have occurred previously and what your family can expect. 7. “What would you consider ‘special needs’?” Just like there is a range of special needs a child could have, there is a range of what child care providers consider to be special needs, which may impact your child’s subsequent care. Getting everyone on the same page before your child participates will help avoid confusion and misunderstandings. 8. “Has your child care program ever cared for a child with this need before?” This question offers background on how the child care provider handled your specific need in the past, and how they may approach future accommodations. Bear in mind that under the Americans with Disabilities
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Act, child care providers are not allowed to assume what care your child needs based on their previous experience or personal understanding of the special need (https://www.ada.gov/childqanda.htm). Instead, they must evaluate your child as an individual to see what they need to thrive in the program and if such accommodations can be offered without posing a “fundamental change to nature of the program.” 9. “How do you introduce new children to your child care program?” A proper introduction of a newcomer into the program can make a significant impact on the child’s experience. 10.“How involved are the families in your child care program?” Some child care providers expect little outside involvement from the families; others expect regular volunteering and contributions from parents. Know what expectations the provider has for you as the parent before you commit to a child care program. – Military One Source
H U.S. MILITARY
SUPPORT FOR FAMILIES THE ESSENTIALS rom special child care services and ongoing medical issues to complex housing situations and strained finances, it can be challenging to find the right resources to support a family member's needs. The good news is, you’re not alone. There are lots of support services available, including:
FINANCIAL PLANNING When you have a family member with special needs, financial planning is vital. Military OneSource experts can help you manage issues like disability tax credits, Supplemental Security Income, estate planning and much more. Relevant Articles: • Financial Planning and Assistance for Families With Special Needs www.militaryonesource.mil/family-relationships/special-needs/support-forfamilies/financial-planning-and-assistance-for-families-with-special-needs
• Supplemental Security Income www.militaryonesource.mil/family-relationships/special-needs/support-for-families/supplemental-security-income
• What Is Social Security Disability Insurance? www.militaryonesource.mil/family-relationships/special-needs/support-for-families/what-is-social-security-disability-insurance
Relevant Resources: • Special Needs Parent Toolkit www.militaryonesource.mil/products#!/detail/146
THE FAIR HOUSING ACT If you or someone in your family is disabled, your home may need specific modifications to make it accessible for daily living. You are protected under the Fair Housing Act, which requires property owners to make, or allow residents to make, a home accessible for those with specific or special needs. This includes military installation housing. Relevant Articles: • Understanding Accessible Housing: The Fair Housing Act www.militaryonesource.mil/family-relationships/special-needs/support-for-families/understanding-accessible-housing-the-fair-housing-act
THE AMERICANS WITH DISABILITIES ACT People protected under the ADA are living with a physical or mental impairment that greatly limits one or more major life activities, such as walking, speaking, lifting, hearing, seeing, reading, sleeping, eating, concentrating or working. The ADA covers injured service members with a military disability, such as traumatic brain injury, spinal injury, loss of a limb, vision or hearing loss and post-traumatic stress disorder. Relevant Articles: • Understanding the Americans With Disabilities Act www.militaryonesource.mil/health-wellness/wounded-warriors/the-roadahead/understanding-the-americans-with-disabilities-act
Relevant Resources: • Americans With Disabilities Act Fact Sheet www.militaryonesource.mil/products#!/detail/180
CHILD CARE SERVICES The military offers quality, affordable child care options for children with special needs. Check out the Department of Defense MilitaryChildCare.com website, which provides a single gateway for military-operated or military-approved child care programs worldwide. Relevant Articles: • Child Care Options for Military Families With Special Needs www.militaryonesource.mil/family-relationships/special-needs/special-educationand-childcare/child-care-options-for-military-families-with-special-needs
• Special Needs Consultations www.militaryonesource.mil/confidential-help/specialty-consultations/specialneeds/special-needs-consultations
Relevant Resources: • MilitaryChildCare.com https://militarychildcare.cnic.navy.mil/mcc-consumer/home/aboutourprogramhome.action
• Special Care Organizational Record for Children with Special Health Care Needs
EFMP FAMILY SUPPORT Exceptional Family Member Program Family Support teaches military families with special needs the skills they need to make good decisions for the person they’re supporting and provides resources to help families gain confidence and strength to improve their quality of life. Relevant Articles: • Exceptional Family Member Program Family Support www.militaryonesource.mil/family-relationships/special-needs/exceptional-familymember/exceptional-family-member-program-family-support
Relevant Resources: • Choosing An Exceptional Life: Family Directed Resource Organizations www.militaryonesource.mil/training-resources/webinars/choosing-an-exceptionallife-family-directed-resource-organizations?
• Center for Parent Information and Resources www.parentcenterhub.org/find-your-center – Military One Source
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PUZZLES & CAMO
My boys are changing and growing. One has autism and the other does not. An unexpected gift I have experienced through all of this is that they are not only changing, they are doing it together.
This month my youngest son, who has autism, will officially be a teenager. The dynamics in our house are changing because his older brother is already 14. Operation Puberty has taken over and my husband and I have had front row seats in how it can affect our lives day to day. Puberty has hit us in waves. The first wave has been the actual introduction to this hormonal bombshell, thanks to Hayden, and has followed up with a second wave, Broden showing us puberty with a mixture of autism for good measure. With Broden, more and more, I see him as a boy becoming a teenager first who also has to be working through his autism. I’ve noticed that mornings with Broden are becoming more similar to Hayden’s mornings. It takes an Act of Congress for him to get out of bed as opposed to last year when he was up and moving after just one visit to his room. Broden would have a smug look on his face when I would tell Hayden, “Broden is already downstairs and ready to go! You’re still putting your socks on!” The eye rolls and snippy one-liners are a daily occurrence these days and I’ve noticed that they just aren’t coming from Hayden. I can’t help but feel differently about Broden when he shows defiance. With Hayden, I would tell Mark, “We have to nip that in the bud! I will not tolerate it!” When Broden rolls his eyes or yells “No!” when I tell him to do something, I’ll smile and think, “I love this. This is something Hayden would do.” A few weeks ago, a tutor working with Broden at his ABA clinic, told me that Broden’s teenage attitude was in full swing that afternoon. When he was asked what he wanted to do next, he
responded by saying, “Nothing.” She said, “Broden, we have to do something. You need to pick something.” He then smirked and said he wanted to sit on the couch. The tutor countered, “How about a puzzle?” Broden stood his ground with, “No.” Eventually they found a compromise. As she told me the story, I couldn’t help but giggle. Broden was acting like a teenager, letting her know what he wanted to do, even though he knew it wasn’t what she wanted. For a moment, I heard a story not about Broden and his autism, but a story about Broden using his voice and expressing what he want-
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ed, even if it wasn’t following the rules. What has been an absolute treat is witnessing the evolvement of Hayden and Broden’s relationship. After school, I hear two sets of feet stumble upstairs, two bedroom doors slam shut, then silence. Many times, I have feared that they will grow even farther apart because Hayden is too busy socializing with his friends and Broden chooses to live in his own world that he has created for himself that is comforting. The boys have taught me that this isn’t true because there is a connection between them. I think this connection may be so deep and complex that I may never fully understand it. ast week, Hayden and I were purging his room to get ready for another PCS move this summer. I was reminded of how much he has grown and changed due to how many books he wanted to throw out. He would chuck books to the side and say, “Give this to Broden. I’ll never read this again.” I laid a small stack aside for Broden, reminding myself that it was Hayden’s decision. On the bottom shelf there were several books that had been cov-
ROLL WITH IT: The eye rolls and snippy one-liners are a daily occurrence these days and I’ve noticed that they just aren’t coming from Hayden. When Broden rolls eyes or yells “No!” when I tell him to do something, I’ll smile and think, “I love this. This is something Hayden would do.”
ered in dust. I assumed that Hayden would be grabbing them and chucking them in the Goodwill pile, but I was wrong. Hayden slowly pulled them out one by one and assessed them. He held two books that were geared toward children who had siblings with autism. The books were cartoonish and were written for siblings who did not quite understand what it meant to live with a sister or brother with autism. I said, “I’m sure you want to get rid of those. You know the stories and are past this phase.” He said, “No, I want to keep them.” He clutched them in his hands and said, “I just can’t seem to let
these go.” I dusted them off and put them back on the bottom shelf. Moments later, we moved to his closet. I pulled an “Autism Adventures” medal off the hook. You don’t want to keep this do you? I don’t even remember why you have this. Hayden took the medal and placed it in his keepsake bin. Hayden said, “I’m keeping this. I got this medal when we took Broden to Delta Airlines so we could practice being on an airplane. Broden sat with me the whole time.” He made it clear that it was a moment he always wanted to remember and he had kept that medal for a reason.
“Hayden held two books that were written for kids who did not quite understand what it meant to live with a sibling with autism. He said ‘I just can’t seem to let these go.’ I put them back on the bottom shelf.”
’m learning that every experience my boys are having together means something. My boys are changing and growing. One has autism and the other does not. An unexpected gift I have experienced through all of this is that they are not only changing, they are doing it together. And I feel blessed to be able to witness it. •
PUZZLES & CAMO Shelly Huhtanen is an Army wife stationed at Fort Benning, GA who has a child with autism. She enjoys sharing her experiences of day-to-day life caring for her son with autism while serving as an Army spouse. She authored “Giving a Voice to the Silent Many” that encompasses many stories of raising a child with autism in the military. Shelly is passionate about autism advocacy for our military and works to bring awareness to our local legislators and command about providing better support for our military autism community, such as better health care and education.
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