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LIFE WITH AVERY


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EP MAGAZINE CONTENTS

OCTOBER 2013 VOLUME 43 ISSUE 10

EMPL YMENT & TRANSITI NING EMPLOYMENT & TRANSITIONING 29 OVERCOMING OBSTACLES TO 35 EMPLOYMENT OPTIONS: EMPLOYMENT THE CHOICE BELONGS TO By Ernst VanBergeijk, PH.D., M.S.W. THE INDIVIDUAL By Terry Archer

32 HOW CUSTOMIZED EMPLOYMENT CAN IMPROVE 38 TIPS FOR WORK OUTCOMES FOR ADULTS WITH TRANSITIONS FOR THE INTELLECTUAL DISABILITIES NEWLY UNEMPLOYED By Rachel Silverman

By Dr. Karen Jacobs, EdD, CPE, OTR/L, FAOTA, and Dr. Lynn Shaw, PhD, OTR

29

FEATURES NATIONAL DOWN SYNDROME AWARENESS MONTH

40 THE STORY BEHIND THE PICTURE By Laura Nivin

42 LIFE WITH AVERY By James Lambert and Stacy Kocur

44 WHAT’S HAPPENING 46 TOYS FOR THE HOLIDAYS 2013 48 SURFER’S HEALING By Kimberlee Rutan McCafferty

50 BANKING FOR THE FUTURE By Tara Schmidlen, MS, CGC ALTERNATIVE MEDICINE SERIES

54 HYBERBARIC THERAPY By K. Paul Stoller, MD, FACHM

57 RESPECTING DIVERSITY AND CHOICE By VOR

40

60 WHY FAMILY MEALTIME CAN BE SO CHALLENGING By Tara Sandra Pelham-Foster OTD, MPHA, OTR/L

ON OUR COVER This photograph of Avery Lambert became an internet sensation, but few really know the story behind the picture. It begins on page 40. Photo by Maria Hey

57 www.eparent.com/EP MAGAZINE • October 2013 1


EP MAGAZINE CONTENTS

OCTOBER 2013 VOLUME 43 ISSUE 10

DEPARTMENTS ANCORA IMPARO

4

TAKE AS DIRECTED By Rick Rader, MD

6

NEW PRODUCTS FROM THE COACH’S CORNER

10 MAKING THE TRANSITION FROM PARENT TO COACH By Tom Curry

16

AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE AND DENTISTRY

12 CHILDHOOD POVERTY, DISABILITIES AND SUPPLEMENTAL SECURITY INCOME By H. Barry Waldman, DDS, MPH, PHD, Jo Ann Simons, MSW, Kristin Compton, DMD, Dolores Cannella, PHD, Steven P. Perlman, DDS, MSCD, DHL (HON)

25

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

MILITARY SECTION

GENETIC ALLIANCE

16 LIFE IS FULL OF CHANGES By Sam Moreno, MS, CRC ERIC’S MOM

20 ERIC’S FAVORITE HOLIDAY By Rosalie LaRocco MASS MUTUAL SPECIAL CARE

22 GETTING YOUR FINANCIAL STRATEGY DONE ORGANIZATION SPOTLIGHT

25 TUBEROUS SCLEROSIS ALLIANCE 70 PRODUCTS & SERVICES

63 64 FINAL RULE: VIETNAM ERA VETERANS’ READJUSTMENT ASSISTANCE ACT 66 MILITARY NEWS

MILITARY SECTION 64 FINAL RULE: VIETNAM ERA VETERAN’S READJUSTMENT ASSISTANCE ACT

PUZZLES & CAMO

68 WHAT HATE CAN AND CAN’T DO By Shelly L. Huhtanen

66 MILITARY NEWS PUZZLES & CAMO

68 WHAT HATE CAN AND CAN’T DO By Shelly L. Huhtanen The contents of ep Magazine’s Military Section are not necessarily the official views of, or endorsed by, the United States Government, the Department of Defense, or the Department of the Army. The appearance of advertising adjacent to the Military Section does not constitute endorsement by the United States Government, the Department of Defense, or the Department of the Army of the products or services advertised.

2 October 2013 • EP MAGAZINE/www.eparent.com


Information and Support for the Special Needs Community

VOLUME 43 ISSUE 10 Editor-In-Chief Managing Editor President, CEO & Publisher Production, Ad Traffic Manager Human Resources Manager Director of Circulation & Business Development Art Direction & Design Resource Guide Specialist Intern Webmaster

ESTABLISHED 1971

Rick Rader, MD Vanessa B. Ira Joseph M. Valenzano, Jr. Stefanie Valenzano Lois Keegan Hamilton Maher FoxPrint Dennis Dusevic Lorena Hernandez Ron Peterson

Sales & Marketing Norman Babat Sales & Marketing Manager Tel: (917) 676-7222 nbabat@eparent.com

Matthew Valenzano Sales & Marketing Manager Tel: (201) 274-4353 mvalenzano@eparent.com

Nick Laqualia Sales & Marketing Manager Tel: (800) 373-7368 ext. 206 nlaqualia@eparent.com

Exceptional Parent magazine was founded in 1971 by Maxwell J. Schleifer, PhD Subscriber Services Exceptional Parent 6 Pickwick Lane, Woodcliff Lake, NJ 07697

Customer Service/New Orders Email: hmaher@eparent.com or toll free: 800-372-7368 ext. 234

Publishing & Editorial Office 6 Pickwick Lane, Woodcliff Lake, NJ 07697 Fax (201) 746-0179

Exceptional Parent (ISSN 0046-9157) is published monthly 11 times per year plus the special January Annual Resource Guide by ep World, Inc., dba Exceptional Parent Magazine, 6 Pickwick Lane, Woodcliff Lake, NJ 07677. Internet address: http://www.eparent.com. Digital access: www.eparentdigital.com. All rights reserved. Copyright ©2013 by ep World, Inc. Exceptional Parent™ is a registered trademark of ep World, Inc. Postmaster: Please send address changes to: Exceptional Parent, 6 Pickwick Lane, Woodcliff Lake, NJ 07677. Any applicable periodical postage paid at Johnstown, PA and additional mailing offices (USPS 557-810). Basic annual subscription rate is $19.95 per year for EP Digital. Annual subscription rate for Canada is also $19.95 (U.S. funds only); all other foreign countries $24.95 (U.S. funds only). Subscriber Service: Direct all inquiries & address changes to: Exceptional Parent, 6 Pickwick Lane, Woodcliff Lake, NJ 07677. Customer Service/New Orders: E-mail: hmaher@eparent.com or call toll free: (800) 372-7368 extension 119. Exceptional Parent. Back issues incur a charge of $10.00 each and depend upon availability, call (800) 372-7368. Agreement # 1420542

EP EDITORIAL ADVISORY BOARD

Saadi Ghatan, MD Assistant Prof. of Neurological Surgery, Division of Pediatric Neurological Surgery, Columbia College of Physicians and Surgeons, Columbia Medical School, New York, NY

Patricia E. McGoldrick, CPNP Pediatric Neurology & Epilepsy, Associate Director, Developmental Disability Center, Roosevelt Hospital, NY

Joan Earle Hahn, DNSc, RN, CS, CDDN Assistant Adjunct Prof., Univ. of California, Los Angeles School of Nursing; Past President, Developmental Disabilities Nurses Association David Hirsch, MD Medical Director at UnitedHealthcare

Frank J. Murphy President and CEO, EP Foundation for Education, Atlanta, GA Kathryn O’Hara, RN Epilepsy Nurse Clinician, Nurse Manager Child Neurology, Division of Child Neurology, Virginia Commonwealth University, Richmond, VA

Henry G. Chambers, MD Pediatric Orthopedic Surgeon, Rady Children's Hospital; Prof. of Clinical Orthopedic Surgery, Univ. of California, San Diego

Jerry Hulick, GA Emeritus, Massachusetts Mutual Life insurance Company, Special Care Planning

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

Stephen L. Defelice, MD Founder and Chairman of the Foundation for Innovation in Medicine (FIM)

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

Steven P. Perlman, DDS, MScD, DHL (Hon) Clinical Prof., Boston University, School of Dentistry, Boston, MA

Esther Schleifer, MSW Clinical Social Worker, Boston, MA Howard Shane, PhD Director, Communications Enhancement Center, Children’s Hospital, Boston, MA Harold Turner, DDS Editor Emeritus, Oral Health Jo Waldron Parent, Disabled American for the Nation, Chief Operations Officer, New World Sounds, Inc., Fort Collins, CO Steven M. Wolf, MD Director of Pediatric Epilepsy at Beth Israel Medical Center, New York, NY; Director of Pediatric Neurology at St. Lukes Roosevelt Medical Center, New York, NY AN ACADEM Y RIC OF

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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.

DEV ELO PM

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

Siegfried M. Pueschel, MD Parent, Prof. of Pediatrics, Brown Univ. School of Medicine, Providence, RI

Endorsed & AL ME DICI NE

N T I S T RY

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

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

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

Mahlon Delong, MD Chair, Dept. of Neurology, Emory Univ., Atlanta, GA

AM E

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

www.eparent.com/EP MAGAZINE • October 2013 3


ANCORA IMPARO

RICK RADER, MD

EDITOR-IN-CHIEF

Take As Directed Barry Blackwell, writing in the New England Journal of Medicine (1973) offered that, “Too often a prescription signals the end to an interview rather than the start of an alliance.” In the case of “prescribing” engage in Special Olympics, the “alliance” is initiated, encouraged and developed over the life of the Special Olympics athlete.

It’s a scenario as old as medicine itself. Patient presents his or her pains, complaints, concerns and fears. The physician questions, pokes, prods and probes. The physician scribbles on a slate, parchment, paper or touch screen and offers, “Take this, it will help.” Ah, the prescription. Panaceas, bromides and elixirs. Early on it was plants, herbs, roots, bark and soil. Molds and spores were de rigueur. Opium, morphine, black henbane, harmal, peyote, and psilocybin were the drugs of choice to soothe the body and were not only taken recreationally but were eventually responsible for the need to regulate the dispensing of certain drugs “by prescription only.” Up until the early 20th century, a prescription merely meant “a doctor’s written advice or recommendation and prescriptions were not limited to just pharmaceutical drugs. In fact, it was not uncommon for doctors to give their patients written prescriptions for bed rest, or a set of shoes one size bigger etc.” The fact that the prescriptions were “written” is noteworthy since they became popular when only one or two percent of the population knew how to read and write. The actual law restricting the use of certain drugs by physicians had its origins in trying to inform consumers about the drug. The 1938 Food, Drug and Cosmetic Act required that every drug bear a label adequately instructing the consumer in the safe use of the product. It said nothing about prescriptions. They soon realized that some drugs were inherently so unsafe that no adequate label cold be written. And so it fell to the physician to “prescribe” drugs. And prescribe they do; in doctor’s offices alone, to the tune of 2.6 billion prescriptions. Throw in another 500 million scripts written in hospital outpatient department visits and emergency 4 October 2013 • EP MAGAZINE/www.eparent.com

rooms. The physicians have quite a lot to prescribe. The FDA has about 800 approved drug ingredients and there are over 100,000 drug products derived from them. We need this armamentarium. According to the World Health Organization’s International Classification of Diseases (ICD), there are probably near 20,000 diagnoses that exist within biomedicine. WHO distinguishes 12, 420 disease categories. So in revisiting the scenario that introduced this article it’s quite a dance. Patient pre-

THE BEST MEDICINE: Orange Grove began to view Special Olympics as a bona fide health and wellness endeavor. sents with one (or more) of a possible 20,000 different, funky things happening to his/her body and the physician selects one of 100,000 different concoctions to meet the funk head on. In the case of the disorders, conditions and syndromes that constitute the field of developmental disabilities, we’re outliers. There are no “prescriptives” specifically for

most of the funks that are negotiated daily by readers of Exceptional Parent (EP) Magazine. We certainly are big time generators and recipients of multiple drugs from multiple therapeutic classifications but we never hear, “Take this, it will help,” only, “Take this.” Till now. One prescription that should be extensively written by clinicians for their patients with intellectual and developmental disabilities is to “engage in Special Olympics.” As a therapeutic regimen it has no peer. It’s safe, effective, readily obtainable, renewable, easily titrated for changes in physical status, many options for delivery, affordable, easy to administer, requires no refrigeration, provides almost immediate improvement, completely systemic, can be taken with or without food, unrestricted indications, has no adverse side effects and readily crosses the blood brain barrier. Much to their collective energy, resources and frustration, Merck, Pfizer, Roche and GlazoSmithKline continue to research the discovery of drugs that boast those attributes. Like all high potent drugs, “The Special Olympics” does require FDA approval. However, here, we are not referring to the Federal Drug Administration—but to Families, Direct (care staff) and Advocates. That is the FDA that impacts on the lives of individuals with intellectual and developmental disabilities; and they have “approved” Special Olympics since its inception. Barry Blackwell, writing in the New England Journal of Medicine (1973) offered that, “Too often a prescription signals the end to an interview rather than the start of an alliance.” In the case of “prescribing” engage in Special Olympics the “alliance” is


WHAT’S HAPPENING

initiated, encouraged and developed over the life of the Special Olympics athlete. Pioneers in the use of “prescribing of Special Olympics” to patients with intellectual and developmental disabilities are the medical practitioners at the Orange Grove Center in Chattanooga, Tennessee (where I have the privilege of serving as the Director of the Habilitation Center). While Orange Grove has been long supporters and participants in Special Olympics as an athletic program providing enjoyable activities, opportunities for socialization and personal accomplishments, we began to view it as a bona fide health and wellness endeavor. The literature is robust as to the myriad attributes that regular physical activity provides to the neuro-typical population (with recent inclusion regarding benefits for patients with dementia and seizures), and so we were motivated to do more than simply display posters of Special Olympic athletes competing. A collaborative equation was developed, which included the Orange Grove Center’s Department of Health Care Services, the Orange Grove Department of Therapeutic Recreation, and the Morton J. Kent Habilitation Center. Thus, the key players included the clinicians, the coaches and the innovators. Under the leadership of Dr. Randy Heisser, Dr. Graham Parker, Nurse Practitioner Latosha Walker, Therapeutic Recreation Specialist Lizzy Cheek and myself (someone has to get the coffee) we created a strategy that led to the necessary interdisciplinary team that such an initiative demands. Conceptually the program begins with the clinician writing an actual prescription advising the patient to “engage in Special Olympics” which leads them to a meeting with Lizzy. An assessment is made that reveals their interests, experience, skills and motivation. Lizzy conducts multiple trial opportunities to ascertain the best Special Olympic sport that would meet the individual’s needs. This is done in consultation with family members and other members

of the “circle of support” (teachers, direct support professionals, job coaches, physical/occupational therapists, behavioral professionals and, often, close friends). Lizzy then sets ups a schedule for practice, smiles and announces, “Let the games begin!” The clinicians record the participation with Special Olympics in their clinical and progress notes and use it as “talking points, encouragement and tracking health indicators.” Dr. Graham Parker, the Director of Orange Grove’s Health Care Services remarked about the vision behind the initiative, “Setting the standard for comprehensive, patient-centered care, Healthcare Services' ‘prescription’ for Special Olympics participation innovatively integrates the fields of Healthcare and Developmental Disability. More than simply promotion of a ‘program’ to benefit individuals with disabilities, this decision punctuates the vital leadership role of Healthcare Services in enhancing physical and psychosocial outcomes for the individuals we serve.” To Blackwell’s observation that “too often a prescription signals the end to an interview rather than the start of an alliance,” we can simply say that by having clinician’s “prescribe” engage in Special Olympics, the alliance elevates the potency of the formula tenfold; leading to enhanced health outcomes that exceed the goals of the U.S. Department of Health and Human Services’ “Healthy People 2020.” Finally we have something that will enable us to say, “Take this, it will help.”•

”AS A THERAPEUTIC REGIMEN, SPECIAL OLYMPICS HAS NO PEER.”

ANCORA IMPARO In his 87th year, the artist Michelangelo (1475 -1564) is believed to have said “Ancora imparo” (I am still learning). Hence, the name for my monthly observations and comments. — Rick Rader, MD, Editor-in-Chief, EP Magazine Director, Morton J. Kent Habilitation Center Orange Grove Center, Chattanooga, TN

NEW IN BOOKS DANIEL'S MUSIC: One Family’s Journey from Tragedy to Empowerment through Faith, Medicine, and the Healing Power of Music By Jerome Preisler with the Trush Family In 1997, Daniel Trush, a bright, active, outgoing 12-year-old, collapsed on the basketball court and fell into a deep coma. Rushed to the hospital, he was found to have five previously undetected aneurysms in his brain. One had burst, causing a massive cerebral hemorrhage. He suffered multiple strokes. Tests showed that his brain functions had flatlined, and doctors would tell his parents his chances of survival were slim to none—or that he’d likely remain in a vegetative state, if he awakened. But the doctors were wrong. Daniel’s traumatic injury did not bring his life to a premature end. A decade after being sped to the emergency room, Daniel Trush completed the New York Marathon. But his incredible journey into the future had just begun. With music having played a crucial role in his recovery, Danny and his family launched Daniel’s Music Foundation, a nonprofit organization for people with disabilities. In time DMF would be honored on a Broadway stage by the New York Yankees. “Daniel’s Music” is the story of Daniel’s recovery against inrediblel odds; of medical science, faith, and perseverance; and of an average family turning their personal trials into a force that brings joy and inspiration. www.eparent.com/EP MAGAZINE • October 2013 5


NEW PRODUCTS OTHELLO TACTILE WOODEN BOARD GAME

MYO The MYO is a myoelectric remote control interface for computers designed to provide individuals with fine motor or other disabilities with the ability to control a computer, tablet or smartphone remotely by making hand or arm gestures. The Myo fits around the user's forearm like a bracelet or sweatband. It has sensors that detect muscle activity via myoelectric activity and a 9-axis inertial measurement unit that acts as a motion sensor. Theses sensors allow it to detect changes down to each individual finger. When tracking the position of the arm and hand, the MYO can detect subtle movements and rotations in all directions. The MYO uses Bluetooth 4.0 Low Energy to communicate with any device with which it is paired. The MYO uses a unique "on/off" gesture (that is unlikely to occur normally) to enable and disable control, and it alerts the user via haptic feedback when it is enabled and detecting movement. COM-

PATIBILITY: For use with IBM or compatible PCs or Apple Macintosh computers and other Bluetooth-enabled mobile devices. SYSTEM REQUIREMENTS: Windows or Mac OS for computers; Apple iOS or Android for smartphones and other mobile devices. POWER: Uses rechargeable Lithium-Ion batteries. COLOR: Black or white. Thalmic Labs is accepting orders; initial shipments of the MYO are expected to begin in 2014. ** Windows is a registered trademark of Microsoft Corporation. ** Macintosh is a registered trademark of Apple Inc. ** Android is a registered trademark of Google Inc.

The Othello Tactile Wooden Board Game is a tactile board game designed for use by individuals who are blind or have low vision. This strategy game includes a wooden storage box, a wood playing board and 64 pegs. The objective of the game is to outflank the opponent, ending up with the majority of pegs on the board in a player's color and winning the game. A player makes a move by placing a peg on the board in a way that he or she has a peg on either end of the opponent's row. All the outflanked pegs now become that player's possession and are flipped over to show the corresponding color. For tactile identification, there is a dot on the green end of each of the game pegs, and the other end is smooth so blind players can tell by touching the pegs. DIMENSIONS: 6 x 5.5 x 1.25 inches. WEIGHT: 8.6 ounces. MAXI-AIDS, INC. 42 Executive Boulevard Farmingdale, New York 11735 Telephone: 800-522-6294 or 631-752-0521 TT: 800-281-3555 or 631-752-0738 Fax: 631-752-0689 Web: http://www.maxiaids.com Email: sales@maxiaids.com

THALMIC LABS INC. 158 King St W. Kitchener, Ontario N2G 1A6 Canada Telephone: 888-777-2546 Email: thalmic@thalmic.com

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 Macro International Inc., is funded by the National Institute on Disability and Rehabilitation Research under contract number ED-02-CO-0038. 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, 8630 Fenton St., Ste. 930, Silver Spring, MD 20910; 800-227-0216 or 301-608-8998 (voice); 301-608-8912 (TTY); 301-608-8958 (fax); web site: www.abledata.com

6 October 2013 • EP MAGAZINE/www.eparent.com


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I HAD ADHD AS A KID. TURNS OUT I STILL HAVE IT. If you had ADHD as a kid, you may still have it. Watch Nicole’s video to learn more, then talk with your doctor.

It’s your ADHD. Own It. Watch Nicole’s video at

NicolesStory.com


NEW PRODUCTS VIDEO SCHEDULER Video Scheduler is a cognitive aid and prompter designed for use by individuals with cognitive or memory disabilities or autism. This application (or app) allows a person to use an Apple iPhone, iPod Touch or iPad as a task organizer and scheduler. Schedules can be created with pictures or videos. The user can organize video modeling content and turn off schedule functions such as "Done." Schedules and modeling created by the user can be shared with other users. The user can also customize the app with the following features: various orientation locks that prevent the user from engaging in stimulatory behaviors with the video; three video and picture sizes; and a pass code function that prevents the user from skipping around to pre-

ferred aspects or events of his or her schedule. Schedules are initially set to portrait mode and can be changed to landscape mode in "Settings." The video component only works with devices with a built-in camera. Video Scheduler can be used to create picture schedules with devices without a built-in camera. COMPATIBILITY: For use with the Apple iPhone, iPod Touch, or iPad. SYSTEM REQUIREMENTS: Apple iOS 4.3 or later. This product is sold through the App Store on Apple iTunes. ** iPhone, iPod Touch, iPad and iTunes are registered trademarks of Apple Inc.

MDR, INC. Irvine, California Web: http://www.look2learn.com Email: info@look2learn.com

ADA ACCESSIBLE PORTABLE SCIENCE LAB The ADA Accessible Portable Science Lab, model PSE–2041, is a portable, accessible science work station designed for use by individuals with lower extremity and mobility disabilities or spinal cord injury and others who use wheelchairs. This workstation is designed for use in classrooms and science laboratories to allow students who use a wheelchair access to scientific experiments in a classroom setting. Made with a sturdy aluminum bar

frame and heavy duty solid plastic panels, this unit resembles a standard desk with a chemical- and heat-resistant counter top and a wide cutout to fit a person in a wheelchair. The work surface can be approached from either side with a wheelchair. On one side of the desk is a stainless steel sink with hot and cold running water and lever handles. This work station is equipped with a 5-gallon tank for fresh water, an 8-gallon tank for waste water, and a 20 AMPS preset

water heater and pump. It has two cabinets, one on each side of the cutout. The cabinet under the sink holds the water tanks and heater, and the other cabinet has permanent shelving for storing equipment. A portable butane micro burner is included. It has 8 heavy-duty 3-inch casters with locking brakes, and it is narrow enough to fit through a standard single door. OPTIONS: Gas propane kit; water filtration system. POWER: The unit plugs into any standard electric power outlet to operate the pump and heater. DIMENSIONS: Counter top (HxLxW) is 33 x 61 x 25 inches; basin (LxWxD) is 11.5 x 7 x 4 inches. COLORS: Counter top is available in black, white, grey, red, blue or maple. WEIGHT: 180 pounds. WARRANTY: 3-year warranty. Manufacturer states that this product meets Americans with Disabilities Act (ADA) standards MONSAM ENTERPRISES, INC. 2685 Pittsburg/Antioch Hwy. Antioch, California 94509 Telephone: 800-513-8562 Fax: 925-757-3681 Web: http://www.portablesink.com

8 October 2013 • EP MAGAZINE/www.eparent.com


Graduating? Make sure she’s ready. To learn more about Bancroft’s programs and services, please call or visit: (800) 774-5516 www.bancroft.org

The Bancroft School Transition Program at Camden County College At age 18, most students with intellectual or developmental disabilities may not be ready for adult life. Bancroft now offers a specialized program on a college campus to prepare such students, ages 18-21, for their future. The program features: s Opportunity to further develop vocational and social skills s Adult learning environment s Support for a smooth transition to adult life and responsibilities s Full and part-time schedules available Bancroft offers a full continuum of education programs for students with special needs. From our Early Education Program for children with autism, to our elementary and secondary education programs – Bancroft is passionate about delivering quality education backed by clinical excellence. +INGS(IGHWAY%ASTsP/"OXs(ADDONleld, NJ 08033-0018


FROM THE COACH’S CORNER

TOM CURRY

Making the Transition from Parent to Coach Yes, an amateur volunteer coach can be professional. In word, demeanor and actions, be the type of coach that you would want to play for in any sport.

You’ve done it! You

accomplish very little. Keep it short and simple before, and definitely after games. The younger the age group, the shorter the speech. I have seen coaches at all levels talk way too long after a loss or even after a win. The kids need to get home on weekdays to do school work and be with family on weekends. I learned early on that after a loss was the wrong time to go on and on. I used to say, “We need to work on our mistakes

may not work at all with today’s modern athlete and parent. We have talked before about “sandwiching” criticism between two positive statements. “Timmy you’re showing some good hustle out there today. Try to pass the ball a little more when surrounded by the defenders. I know you will make that adjustment in the second half.” Another way is to remind the player that he or she is “the type of player who never makes the same mistake twice” or “the type of player who sets the example for the rest of the team.” Just the other day, I heard Lou Holtz, ESPN football analyst and former Notre Dame football coach, say, “Praise in public… and criticize in private.” It is a good reminder for every coach to remember, whether they are a rookie or veteran.

volunteered to coach your child’s team. No one else stepped up, so you opened your mouth and said, “I’ll do it!” Now what? What do I do? Where do I start? What have I done? You ask yourself these questions as you venture down the road to coaching! The first thing to consider is how your decision to coach will affect your own child. Many parents volunteer for the wrong reasons. They want to insure their child will play, or play a certain position. That is a recipe for disaster. If your intent is to make sure your child is the pitcher or quarterback, or plays on the front line in soccer, I humbly suggest that you retire immediately. Not only are you doing your child a disservice, but the potential for hard feelings abound with other parents and the kids on the team. Whether your child is deserving of the position or not has little to do with what you may hear during the season. BE EDUCATED! When I coached my son in his high school basThe internet has COACHING MOTIVATION “If your intent is to make sure your child is the pitcher or ketball years, those made coaching ideas, quarterback, or plays on the front line in soccer, I humbly suggest that you retire issues surfaced once in immediately.” drills, practice and awhile. Through his game ideas available to leadership, abilities and play, most of those in practice tomorrow. We will talk about everyone. Even if you have limited knowlcriticisms were unfounded. But it didn’t how we will get better tomorrow. Let’s get edge or experience, you can find more mean that those criticisms didn’t hurt him a good night’s sleep and get better tomor- information and valuable tips on any sport or me. Some other things to consider as row!” Trust me… the kids and parents that can really help. Attend a clinic, ask the you begin your coaching assignment are: appreciated it. local high school coaches, talk to different people to get good ideas on coaching. You BE ORGANIZED! BE POSITIVE! may pick up just one thought that might Many times, beginning coaches do not I’d like to believe that this would be a help you structure a drill to help you pay attention to the details in and around given for anyone in coaching. However, it’s improve your team’s individual and team the sport and the time commitment not. Some beginning coaches make the involved. Stress starting on time and fin- mistake of coaching in the same manner ishing on time. Long winded speeches they have been coached. Those methods 10 October 2013 • EP MAGAZINE/www.eparent.com


skills. John Wooden once said, “Others have brains too!” If the best coaches in the business visit and talk with each other, certainly new coaches should engage in similar conversations and exchanges to get some thoughts on the sport they are coaching.

be memorable or forgettable? Most kids go home and watch television, play video games, do homework, etc. Their lives move on quickly from one thing to another. Coaches need to move on in the same way. And, please remember…Its’ not about trophies and jackets and championships! Last, but not least…

BE ENTHUSIASTIC! John Madden once said to his players,“Be fired up with enthusiasm or YOU will be fired with enthusiasm!” Can you imagine being with a coach or teacher who wasn’t enthusiastic? Would you want to play for that coach or be in that class? Enthusiasm is contagious and grows. So does negativity. Which do you want to be remembered for?

BE REASONABLE! You are coaching kids. They are not professional athletes, nor are they college athletes. For some, it will be their first experience in organized sports. Do you want it to

BE PROFESSIONAL! Yes, an amateur volunteer coach can be professional. In word, demeanor and actions, be the type of coach that you would want to play for in any sport. Your influence knows no limits. A quick test for all coaches that I ask when I interview anyone for a coaching position goes something like this… Name the last 10 Heisman trophy winners. Name the last five winners of the Oscar for Best Actor… and so on. Then I ask them to name a coach or teacher who had the best influence on their life. Everyone struggles with the “famous people questions.” No one strug-

gles with the “influence question.” So in the broadest sense of the word “professional,” try to be the coach that your players and teams of any age will remember in that positive way as that person who had an impact on their life. Good luck to those of you that do volunteer to coach and guide your child and others. It is an awesome responsibility and a rewarding one, when done with the right purpose and values in mind.•

COACH’S CORNER Tom Curry has been an Athletic Director in Bergen County, New Jersey, as well as an adjunct professor in the Wellness and Exercise Science Department at Bergen Community College for 24 years. He has coached high school basketball and golf and was voted Bergen County Basketball Coach of the Year in 2002. He has spoken at the New Jersey Medical Society Sports Symposium and to parent groups on various issues pertaining to youth sports. He was inducted into the NJ Coaches Hall of Fame in 2012.

www.eparent.com/EP MAGAZINE • October 2013 11


AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE & DENTISTRY

Childhood Poverty, Disabilities and Supplemental Security Income In October 2012, SSI provided monthly cash benefits to 1.3 million children with disabilities under age 18 whose families have low incomes and few assets –or about 1.7% percent of all children in the United States. BY H. BARRY WALDMAN, DDS, MPH, PHD, JO ANN SIMONS, MSW, KRISTIN COMPTON, DMD, DOLORES CANNELLA, PHD, STEVEN P. PERLMAN, DDS, MSCD, DHL (HON) POVERTY In 2011, 16.1 million children (21.9% of all children) less than 18 years of age lived in poverty; including: • 38.8% (4.3 million) of black nonHispanic children. • 21.9% (4.8 million) of white nonHispanic children. • 34.1% (6.0 million) of Hispanic children (of any race). • 13.3% (.6 million) of Asian children.1 "As we look to identify and institute effective interventions, we should be careful not to lose sight of the safety net’s considerable accomplishments or the progress that has been made in improving the lives of tens of millions of less fortunate Americans (of all ages).”2 (See chart) Nevertheless, the gaps between the incomes of the richest households and poor and middle-income households are wide and growing in most states, according to a major new report from the Center on Budget and Policy Priorities and the Economic Policy Institute that examines inequality at the state level.3 Across all states, the average income of the richest fifth of households was eight times that of the poorest fifth as of the late 2000s. New

Mexico (largest gap), Arizona, California, Georgia, New York, Louisiana, Texas, Massachusetts, Illinois, and Mississippi face major gaps.3, 4 (See map) “Many low-income children never reach the starting line…”2 Too many children start kindergarten already far behind, and their future opportunities — including going to college and succeeding in a job — are seriously constrained. Children whose families live well below the poverty line or who live in very disadvantaged neighborhoods can face particularly difficult challenges.2 In the past, teams of medical researchers found rates of childhood malnutrition and nutrition-related conditions

in various poor areas of the United States that rivaled those in some developing countries. These findings helped create a bipartisan consensus to improve and expand nutrition programs, and when the researchers returned to the same poor areas a decade later, they found dramatic improvement. Child malnutrition and related conditions had become rare (and have remained so ever since). The Supplemental Nutrition Assistance Program (SNAP, formerly known as the Food Stamp Program) is the nation’s largest child nutrition program. SNAP provides families with an estimated 22 million children with resources to purchase a nutritionally adequate diet. This represents close to 1 in 3 children (29 percent) in the United States. Almost half of all SNAP recipients are children (47 percent), and an additional 26 percent are adults living with children. As such, SNAP is crucially important to children’s health and well-being.5 (See figure 1) • In 2011, SNAP provided an estimated $51 billion in benefits to families with children, over half of which went to families with preschool-age children. • A typical family with children that is

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.

12 October 2013 • EP MAGAZINE/www.eparent.com


cially in light of the very low amount of basic SNAP benefits. Without the Recovery Act’s boost, SNAP benefits average only about $1.30 per person per meal.” 6

CHILDREN WITH SPECIAL NEEDS

enrolled in SNAP has income (not including SNAP) at 57% of the poverty line. For a family of three, 57% of the poverty line corresponds with an annual income of $10,785 in 2012. A typical family with children on SNAP spends close to three-quarters of its income on housing and/or child care costs. Families with children currently receive an average of $420 a month in SNAP benefits, or about $5,000 a year. • SNAP benefits help working families support their children. Nearly half (48%) of children who receive SNAP live in low-wage working families. For a typical working household with children, SNAP benefits represent about 30% of the family’s average income.5 • Food insecurity is particularly harmful in prenatal life and early childhood, when they experience rapid growth in their bodies and brains. Studies have shown that inadequate nutrition, even mildly below target nutritional goals, stunts growth and development. Infants and toddlers from food-insecure families are 90% more likely to be in fair or poor health and 30% more likely to be hospitalized, than their counterparts in food-secure house-

holds. • Food insecurity is also associated with negative health outcomes in older children, including poorer physical health, decreased school achievement in reading and math, and behavioral and psychological conditions. These conditions affect children’s ability to learn and perform well in school, which has longrange implications for their future well-being and earning potential.5 Note: “The 2009 Recovery Act’s temporary boost to Supplemental Nutrition Assistance Program (SNAP) benefits is scheduled to end on November 1, 2013, resulting in a benefit cut for every SNAP household. For families of three, the cut likely will be $20 to $25 a month — $240 to $300 a year. That’s a serious loss, espe-

Among children less than 15 years, there are more than 5 million youngsters with disabilities, including 2.6 million with severe disabilities. Millions of these children have difficulty doing homework, hundreds of thousands have difficulties getting along with others, 1.8 million have attention deficit hyperactive disorder (ADHD), hundreds of thousands have difficulties seeing words, hearing conversations, difficulty with speech, walking and running and tens of thousands use wheelchairs.7 Supplemental Security Income (SSI) provides benefits for children with disabilities and low-income. In October 2012, SSI provided monthly cash benefits to 1.3 million children with disabilities under age 18 whose families have low incomes and few assets (or about 1.7% percent of all children in the United States). That rate has inched up very gradually for the last decade, probably due to advances in detection and diagnosis of certain disabling conditions and the rising rate of child poverty. The rate has temporarily increased in the wake of the prolonged economic downturn, which has increased the number of children who come from low-income families and hence the number of children with disables eligible for SSI. The number of children on SSI represents about one-fifth of the 8 to 9% of U.S. children who are estimated to have serious disabilities.8 Who qualifies? A child’s impairments must match (or equal in severity) a list of disabling conditions compiled by the Social Security Administration (SSA). Qualified medical professionals — physicians, licensed or certified psychologists, or certain other experts — must submit evidence of the disability. Assertions by parents and teachers are not enough. SSA rejects about 60% of applications for SSI for children with disabilities.8 How long do benefits continue? Federal law directs SSA to review a child’s eligibility at least once every three years (or www.eparent.com/EP MAGAZINE • October 2013 13


sooner, in the case of low birth-weight babies). The adult receiving the SSI payments on the child’s behalf — usually a parent — must provide evidence and bring the child to a consultative examination if requested. These “continuing disability reviews” lead to benefit termination for about 20% of all children reviewed, other than those qualifying as low birth-weight babies, and about half of the low birthweight infants. In addition, special reviews occur again at age 18, and they end benefits for over one-third of the children still receiving SSI at that age.8 What’s the impact of SSI benefits? SSI benefits, which average $615 a month for a child with a disability (the federal maximum is $698), lift many families out of poverty and especially out of “deep poverty.” SSI lifts more than 300,000 children with disabilities from below 50% of the poverty line to above that threshold. SSI assistance helps families cover the extra costs of raising a child with a severe disability — estimated at about $6,000 a year, or $11,000 if we include the loss of future earnings.8 The added income that SSI provides, and its impact in lifting many children out of deep poverty, may yield lasting gains. A substantial body of evidence indicates that poor children whose families receive a significant boost in income do better in school and work and earn more as adults. Studies show that families with children with disabilities are particularly likely to experience material hardship — extreme difficulty in paying food, housing, and medical bills. A modest but stable source of income provides relief from hardship and promotes continuity in residence, education, and medical care.8 Is SSI marked by abuse? “There is no credible evidence of widespread abuse among families receiving SSI for disabled children.”8 In the 1990s, rumors appeared in the media that parents were “coaching” their children to exaggerate their impairments in order to get benefits; however, investigations refuted those allegations.8 Comments: While the SSI program may be victim of policy decisions that could reduce this important program, if history is our guide, the cuts will be made and more children with disabilities will lose an important safety net. After 20 years of building family support programs for fam14 October 2013 • EP MAGAZINE/www.eparent.com

ilies who have a child with a disability, the last decade has seen a steady erosion of these important services. Most families with a child with a disability, outside of a public education, do not receive any meaningful supports that allow them to thrive under some very difficult situations. The real story is about those families whose family income is outside of the strict income established by the Social Security Administration. Yet, family support services (respite care, support groups, information and referral, after school and vacation programs, recreation programs, skill training, intensive home supports, etc.) have seen their budgets cut first and often. These inexpensive yet flexible services offer families the support to keep their families intact and emotionally healthy.

REALITIES States are slowly recovering from an unprecedented budget crisis that resulted from the recent recession and the greatest decline in state tax revenues on record. Without adequate revenues, states and localities cannot continue providing public services like education and health care that lay the groundwork for a prosperous future. Today, states face a number of disturbing problems that make their revenue systems weak and vulnerable: • State revenues remain deeply damaged by the recent recession, which was the worst downturn for states in 70 years. While revenues have improved recently, funding levels remain far below prerecession levels and reserve funds need replenishing, making it very hard for states to strengthen key services. • The federal government, which provides about one-quarter of state revenues, is poised to make deep spending cuts. As a result of cuts implemented in 2011, federal funding for schools and other non-entitlement grants to states are on track to reach their lowest levels in four decades, measured as a share of the economy. • Some state policymakers are pushing for large tax cuts that would further undermine state revenues, with potentially dramatic consequences for public services.9 In such an economic environment it is all too easy to curtail programs without

considering the dependency of particularly vulnerable populations of children with disabilities who live in low income families. Reviews such as this presentation in Exceptional Parent (EP) Magazine may be categorized as “preaching to the choir.” The need is to motivate politicians regarding the impact on their most vulnerable constituents. Question: When was the last time you considered such a pro-active effort?• ABOUT THE AUTHORS: H. Barry Waldman, DDS, MPH, PhD is Distinguished Teaching Professor, Department of General Dentistry at Stony Brook University, NY; E-mail: h.waldman@stonybrook.edu Jo Ann Simons, MSW is affiliated with Cardinal Cushing Centers. She is President/CEO, of the Ruderman Family Foundation, Disability Advisor, Hanover, MA Kristin Compton, DMD is Director of Dental Services, Orange Grove Center; Adjunct Professor of Dental Medicine, Chattanooga State Technical College, Chattanooga, TN Steven P. Perlman, DDS, MScD, DHL (Hon) is Global Clinical Director, Special Olympics, Special Smiles and Clinical Professor of Pediatric Dentistry, The Boston University Goldman School of Dental Medicine, Private pediatric dentistry practice – Lynn MA

References 1. DeNavas-Walt C, Proctor BD, Smith JC. U.S. Census Bureau, Current Population Reports, P60-243, Income, Poverty, and Health Insurance Coverage in the United States: 2011, U.S. Government Printing Office, Washington, DC, 2012. Web site: http://www.census.gov/prod/2012pubs/p60-243.pdf Accessed February 7, 2013. 2. Greenstein R. Center on Budget and Policy Priorities. Commentary: How effective is the safety net? Web site: http://www.cbpp.org/cms/index.cfm?fa=view&id=3898 February 6, 2013 Accessed February 7, 2013. 3. Center on Budget and Policy Priorities. Poverty and income. Web site: http://www.cbpp.org/research/index.cfm?fa=topic&id=36 Accessed February 6, 2013. 4. Center on Budget and Policy Priorities. Poverty and income. November 15, 2012 Web site: http://www.cbpp.org/cms/index.cfm?fa=view&id=3861Accessed February 6, 2013. 5. Keith-Jennings B. Center on Budget and Policy Priorities. SNAP plays a critical role in helping children. Web site: http://www.cbpp.org/cms/?fa=view&id=3805 Accessed February 7, 2013. 6. Dean S, Rosenbaum D. Center on Budget and Policy Priorities. SNAP benefits will be cut for all participants in November 2013. Web site: http://www.cbpp.org/cms/index.cfm?fa=view&id=3899 February 9, 2013. 7. Brault MW. Americans with Disabilities: 2010, Census Bureau. Current Population Reports P70-131, July 2012. Web site: http://www.census.gov/prod/2012pubs/p70-131.pdf Accessed February 8, 2013. 8. Ruffing K, Pavetti L. Center on Budget and Policy Priorities. SSI and children with disabilities: just the facts. December 14, 2012.Web site: http://www.cbpp.org/cms/index.cfm?fa=view&id=3875 Accessed February 8, 2013. 9. Spillane S. Center on Budget and Policy Priorities.: The ABCs of state budgets. Web site: 2013http://www.cbpp.org/cms/index.cfm?fa=view&id=3067 February 8, 2013.


GENETIC ALLIANCE

EMPL YMENT & TRANSITI NING

Life is Full of Changes A Story of my Journey through Transitions Individuals with disabilities have typical worries and pain, but we also have a lot of happiness and moments of true passion and strength. Disability or not, people must be encouraged to embrace their differences and make their own moments. BY SAM MORENO, MS, CRC was raised by liberal parents. I was the second of three children and the first with SMA II (my younger sister also has SMA II). My parents treated us all the same and expected the best from us. We did not make a big deal about being different or even use the “D word” (disability). I always loved school. I was the annoying kid who read every road sign to you, just because I could. It is almost like I knew that learning to read was an early step to world domination. I also daydreamed. In middle school, it took me from the time I got home until the time I went to bed to finish my homework. Most people assumed that this was because I could not write very fast, and some of that was true. However, most of the time I spent alone at the kitchen table was spent in my mind, climbing mountains, dancing on a stage, building houses, and playing baseball. I went to a very small school. In fact, my graduating class was a gusher of 56 students. There were few extracurricular activities for the students, and even fewer that my sister and I could sign up for. I remember our coach asking me to play baseball with the rest of my class. It was basically me parking myself out of the line of fire, while my coach hit the ball. I then drove my chair as fast as I could to first base over the lumpy ground. I felt ridiculous and my friends just felt awkward for me. Before I made it to Home Base, I let my embarrassment get the best of me, and I left the field. The coach scolded me for possibly endangering myself even though I had specifically waited until the ball had already hit someone else. The public scolding did nothing to relieve the embarrassment I already felt. I made a vow to myself (which I have since broken many times) to not allow myself to get into these embarrassing situations. I planned to do this by being as invisible as I possibly could and keeping to the background. I began hiding my talents. When my teachers handed back my exams with A+ and 100% written at the top, I would quickly flip them over. I did really well in English and

I

Creative Writing classes and no one but my teachers knew. I feel the need to point out that I was never bullied by the other kids at school. I got the most grief from my teachers who singled me out and did not even try to understand me. This is not to say that every teacher I had was awful. I just noticed that there is a lot in the current news about bullying, and it seems to me that we must look to the teachers for their parts in this as well. I had some exceptional teachers. One in particular was the first male teacher I had. He singled me out in a different way, when he asked me to join his Odyssey of the Mind group. This was the first time that a teacher recognized me for my critical thinking skills. The awful teachers were pretty bad. They seemed to enjoy reminding me that I was different and made me feel like a burden to the other students – my friends. I remember my mother coming up at lunch time some days to help me. On one particular day, I was crying because my teacher had humiliated me in front of the entire class. For some reason, we are often judged by how quickly we can perform a task. I have a disease which affects my physical strength so, obviously, this does not make me look good. We were doing a timed multiplication test. Long story short, my teacher announces that I have failed. My mother went to “speak” with her before we came back from lunch. My mother is typically a very quiet person, and I add quotes around the word “speak” because it actually got quite loud in that classroom. I still do not know what was said, but when we all returned from lunch, my teacher stood before the class and read from her grade

”I MADE A VOW TO MYSELF TO NOT ALLOW MYSELF TO GET INTO THESE EMBARRASSING SITUATIONS. I BEGAN HIDING MY TALENTS.”

GENETIC ALLIANCE The world’s leading nonprofit health advocacy organization committed to transforming health through genetics and promoting an environment of openness centered on the health of individuals, families, and communities. 16 October 2013 • EP MAGAZINE/www.eparent.com


EMBRACING DIFFERENCES “I had been encouraged and tested. I had learned to face my self and follow through with the things that I wanted, even if it was not always how I expected to get there.” book all of my grades, none of which were even close to failing. This was also embarrassing and unnecessary. A simple, “I’m sorry” would have sufficed. My ears are on fire as I retell this story. I am 30 years old, and I still have nightmares and anxiety because of this event. The funny thing is that recently, this was brought up by a friend from high school. He asked me if I remembered that day when our teacher told everyone that I had good grades. In high school, I began experimenting with my body. I remember eating very little even though I was terribly hungry, just because I could. Like many young people, I felt that there was a lot going on that I could not control. What I allowed into my body was one of the only things that I felt I could control. This control made me feel strong, and it became more about empowerment than about being fat. My weight dropped, and I began to eat enough to maintain a weight that was healthy. The fact that was also empowering was that I did not let this get away from me. I did not get ill from this experiment; I gained perspective. I maintained excellent grades throughout the years I was a student. I researched all of the colleges and universities that contacted me (and loads of others that did not).

I truly believed that I would leave home and go to college. When I called these colleges to see what sort of personal assistant services they offered to students with disabilities, I was told each time that they did not offer this type of service. I would check the number, and yes, I had in fact called the Disability Services Office. Apparently, these places can help you find someone to take notes for you, but not to help you get to class. I honestly had no clue that the services that are available in secondary school for students with disabilities are not available in a post-secondary school setting. I suddenly realized that not only would I not be able to enjoy the experience of college life, but I would not even be able to attend the school of my choice. After all those years doing well in school and staying out of trouble, I was disillusioned and stripped of hope. There was a community college nearby that I would not even consider. They only required a 2.0 grade point average to get in. It was for burnouts, kids

with babies, older people changing careers. It was not for me. One day, after listening to several automatic messages and being transferred several times on a call with the Social Security Administration, I considered ending my life. I know, pretty typical. I had recently graduated high school, my parents were at work, my sister was at school, and there was a bottle of pain killers on the table. With each pill I swallowed, I became sadder. I thought of my family finding me and my sister growing up alone. I thought about how I never gave up. And I stopped. I put the cap back on the bottle and wiped my face. I had dinner with my family that night and thought about enrolling in community college. I completed my associate degree, and kept going. Some semesters, I could only get two classes that I needed. My mom would drop me off at 7:00 am and sometimes, I would not get home until 8:00 pm. I survived on crackers and the small library

”I HAD NO CLUE THAT SERVICES FOR STUDENTS WITH DISABILITIES ARE NOT AVAILABLE IN A POST-SECONDARY SCHOOL SETTING.”

www.eparent.com/EP MAGAZINE • October 2013 17


on campus. With no one to assist me with using the restroom, I sat in my own urine for hours, hoping that no one would sit too close to me. I began to work toward a bachelor’s degree in counseling. With the help of my parents, my sister and I moved to Ada, Oklahoma where we could be closer to East Central University. I put advertisements out and found some great personal assistants to come in the morning and get me up and ready for class. I completed my bachelor’s degree and signed up for master’s level courses. Since I had graduated high school, I had been working with a vocational rehabilitation counselor. Ron was the first person to ask me what I wanted to do with my life. When I told him I was thinking about counseling, he supported me. I knew that I wanted to help people the way others had helped me. I had been encouraged and tested. I had learned to

face my self and follow through with the things that I wanted, even if it was not always how I expected to get there. I had a path and a roadmap, but in 2009, I met a man who lived in Knoxville, Tennessee. We met online and began talking with each other every day. He has Duchenne Muscular Dystrophy and a similar desire to help people with disabilities. From the beginning, I knew he was a keeper. However, I lived in Oklahoma, something had to give. This something was me. We decided that because his parents had more flexible work schedules, that I would move in with him and his parents. This was fine for about three months. I was extremely homesick. I could not even call my mom without bawling afterward. She warned me that it would be tough, and it was. It still is. I helped plan our wedding without my mother, my sister, and friends. My family came to the wed-

”I KNEW THAT I WANTED TO HELP PEOPLE THE WAY OTHERS HAD HELPED ME.”

ding, but it took everything I had not to sneak in the van and go home with them. While I love my husband, they are my heart and home, and I will always live there. Looking back over these moments, I am comforted in the thought that parents may read this and be assured that their children will live full lives. Individuals with disabilities have typical worries and pain, but we also have a lot of happiness and moments of true passion and strength. Disability or not, people must be encouraged to embrace their differences and make their own moments.• ABOUT THE AUTHOR: Samantha Moreno, M.S., CRC currently resides in Knoxville, TN with her husband of two years. She assists clients with employment and peer counseling at the local Independent Living Center and offers transition services through the CHOICES program for individuals who are leaving nursing facilities. Samantha is also the State Coordinator for the Ms. Wheelchair Tennessee organization, serves on the State Rehabilitation Council, and is the Director of Volunteer and Employment Services for McGrath Solutions.

she earned these. ,W·Vour jobWRJLYHher WKHEHVWFDUHDQ\ZKHUH

OHDUQPRUHDW www.womenshealth.va.gov

18 October 2013 • EP MAGAZINE/www.eparent.com


Odds of a child becoming a professional athlete: 1 in 16,000 Odds of a child being diagnosed with autism: 1 in 88

Some signs to look for:

No big smiles or other joyful expressions by 6 months.

No babbling by 12 months.

No words by 16 months.

To learn more of the signs of autism, visit autismspeaks.org © 2012 Autism Speaks Inc. “Autism Speaks” and “It’s Time To Listen” & design are trademarks owned by Autism Speaks Inc. All rights reserved.


ERIC’S MOM

ROSALIE LAROCCO

Eric’s Favorite Holiday On Halloween, a children’s hospital is a monster mash of fun!

Spending so many years in hospitals, Eric and I learned that out of all the holidays you could spend in such an environment, Halloween is the most fun! We had the privilege of experiencing Halloween with some of the most creative and thoughtful individuals that planned Halloween- inspired parties and activities that were as magical as a day spent in Disney World. No easy feat when the traditional trick or treat just won’t do! The care to ensure a not-so-scary Halloween in a place that can be terrifying to most on any day is nothing short of miraculous. We marched in parades that allowed for children to navigate through mazes of fun decorations, goofy sounds and spooky colored streamers. Everyone got into the spirit of

20 October 2013 • EP MAGAZINE/www.eparent.com

the day and I have to say that seeing some of Eric’s doctors in Halloween costumes, was a great reminder that we all shared a common desire to brighten a sick child’s day. Getting a smile and the musical sound of giggling was the only reward required by all. If we couldn’t leave our hospital bed, the holiday festivities came to bedside! On Halloween a children’s hospital is a monster mash of fun! For me, Halloween took a great deal of planning and ingenuity, and posed a few obstacles and challenges. I learned after the first couple of Halloweens that one piece costumes were not very practical for diaper

changes, wires and tubing, no matter how adorable! When your child has respiratory issues, anything with a mask was automatically disqualified. For a little boy with sensory issues, I learned that choosing carefully prevented meltdowns, for it had to be as comfortable as his regular clothing, with nothing scratchy or itchy. Surprisingly, Eric didn’t seem to mind hats, an eye patch or a stick-on mustache. Each year I got better at developing a check list of items to steer clear from, when it came to costume ideas. I would curb my creativity if it interfered with Eric’s ability to move and was ever mindful of the length of the costume so it wouldn’t get caught in the wheels of his wheelchair. I would test several versions of our costume before the big day, to get a sense of what Eric would be approving of and what he wasn’t fond of. I did everything I could to ensure Eric enjoyed each Halloween, to the best of my ability, with his comfort and safety as my first priority. You would never know it from all our fabulous photos of Halloweens past, but Eric always had something happening each October. Whether recovering from a surgery, coming down with a bug or in the middle of a full blown case of pneumonia, we managed, no matter the circumstances, to make the best of the holiday. Transforming my pookie bear into a character like a gangster or a pirate was always great fun! I so thoroughly enjoyed getting costumes for Eric, that I believe his enthusiasm for the holiday was because he knew I got such a kick out it. And since Eric could not eat anything, the Great Pumpkin always left lots of toys, giving Santa Claus some major competition. Even with all his challenges, Eric loved getting lots of toys! I can remember the fastest costume I ever put together was due to an unplanned trip to the hospital the day before Halloween. Really, when rushing to the hospital, grab-


bing the cowboy costume is not high on your mind! After a night of intravenous antibiotics and 14 hours of comfortable sleep, Eric awoke energized and happy and ready for some Halloween fun. An exhausted Eric’s mom ran to the hospital gift shop, while his nurse took care of Sir Eric, hoping to find a cute t-shirt with a pumpkin or something. Well, I found a child sized set of scrubs! Along with a disposable stethoscope and a surgical mask, we were in business and just in the nick of time for trick or treating, hospital style! My absolute favorite and most difficult of his costumes was the year Eric was transformed into Elvis. I purchased an Elvis costume and decided it was not embellished enough. For a woman who could barely sew, I managed to add enough rhinestones that even the real Elvis Presley would have been jealous. Complete with a rhinestone cape and a cute blow up guitar, Eric had girls of all ages swooning everywhere he went that Halloween. What makes parents of special children become insanely creative and artistic about their child’s costume? I have seen incredible costumes that transform a wheelchair into a motorcycle, an ice cream truck and a throne fit for only the fairest of princesses. I’ve seen crutches transformed into the front two legs of a giraffe, and gait trainer turned into a ship for a pirate! I suspect for all parents, it’s a day where disability for their child is masked, or entirely disappears. It brings a chance for our children to

A Message for Eric

Images of you in your Halloween costumes over the years are as clear in my mind’s eye and I can’t help but wonder what we would have come up with this year? Know that your mom misses you very much! Recently I came across a quote from Mahatma Gandhi that captured your spirit in words that reminded me of you so very much.“Strength does not come from physical capacity. It comes from an indomitable will.” You are forever in my heart and the inspiration for all the things I do each day! Happy Halloween, boo-boo, Mommy loves you so!

look and participate in a way that most children get to do and bask in the normalness of it all. Struggling for Halloween costume ideas this year? The answer could be at your fingertips. Just do a search on the internet and you will find great blogs with numerous ideas, images for inspiration and even sites with how-to instructions. It can be as simple as a silly hat or one as complex as their imagination and yours allows. That magical, mysterious, spookiest day of the year will soon be here! Every child should have the opportunity to enjoy Halloween and all that it has to offer. This Halloween, I’ll be

looking for and celebrating each ghost and goblin I see, because I know behind each clever costume is a loving exceptional parent!• ERIC’S MOM Rosalie currently works in business development, family support services and family education at a UCP Affiliate in New York. She is founder of the Eric Brigandi Foundation. Inc., graduate of Partners in Policymaking Program and serves on several councils on family support, and board member of The Joubert Syndrome & Related Disorders Foundation. She lives in New Jersey. For questions or suggestions pertaining to EP's column Eric's Mom, please email Eric’s Mom at columnist@eparent.com

With Halloween upon us, a lot of little people will be visiting your home. Be accepting. • The child who is grabbing more than one piece of candy may have poor fine motor skills. • The child who takes forever to pick out one piece of candy may have motor planning issues. • The child who does not say trick or treat or thank you may be non-verbal. • The child who looks disappointed when they see your bowl might have an allergy or be diabetic. • The child isn't wearing a costume at all might have a sensory issue (SPD) or autism.

Be nice. Be patient. It’s everyone’s Halloween! www.eparent.com/EP MAGAZINE • October 2013 21


Information of interest to people with disabilities and other special needs and their families.

Getting Your Financial Strategy Done: Who Does What? What’s the Process? Don’t have time to create a financial strategy for your family? Afraid of all the work involved? Do you simply not know where to begin? Here’s what it takes to get it done. Begin with the help of others “A friend of mine who’s a psychologist once shared a valuable analogy with me, one I share with many of my clients,” says Mary-Stuart Carruthers, who has earned the Chartered Special Needs Consultant (ChSNC)1 designation and is a Special Care Planner2 with MassMutual Wisconsin3 in Rockford, Illinois, a general agency of Massachusetts Mutual Life Insurance Company (MassMutual). “He explained that at times, each of us feels overwhelmed by something – a decision that must be made, a task that must be completed, or simply life in general. You might feel like you’re sinking in a large body of water with nothing to cling to. He tells his clients, ‘I’ll jump into the water with you and we’ll swim together.’ They’ll take on one issue at a time, discussing it until it becomes a little island, a little something to hold onto. Next they’ll jump in the water again and take on another issue until it, too, becomes an island, then another until all the islands come together as one large body of land. “I like the idea of this, the idea of having someone to help tackle a big task a little bit at a time. I help my clients this way, working with them at their pace until eventually they have a financial strategy put together for their family, a large body of land that puts a strong footing under them.”

Your financial team When it comes to creating a financial strategy, you aren’t alone, as the analogy above illustrates. There are a number of people who may be on your team (or in the water with you), including your accountant, banker, even social services representatives you may work with, but primarily, there are three key players – you, a financial professional trained in special needs planning, such as a Special Care Planner, and an attorney who has experience in serving people with special needs. So, who does what?

Financial Planning Update Supported by MassMutual Life Insurance Company

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You Your role is to carefully and honestly look at your financial picture. What’s it like now, and what would you like to see change? What’s your current cash flow? What do you want it to be? What are the current needs of your family member who has special needs? What will that person’s future be? Be ready to pull together all your financial information. Be willing to evaluate your situation and be open to consider suggested options. And be ready to answer some tough questions.

A Special Care Planner As part of your team of professionals, a Special Care Planner can be your advocate and help you develop a life care plan for your loved one. They can also provide referrals to community organizations and other organizations who can assist families with special needs. The Special Care Planner will ask the tough questions, the ones clients know they must explore, but may be avoiding. “For example, a couple may have a daughter with special needs and a son with a natural nurturing ability and strong love for his sister,” says Carruthers. “However, until a discussion takes place, the parents may not know the son doesn’t want the full responsibility of care giver to his sister. We’ll talk about the daughter’s level of independence, future residential options, how to choose a guardian, her eligibility for government benefits and how that may impact the family’s financial strategy, and more.”


Will their daughter ever hold a job? Will a parent quit a job to stay home and provide full-time care? “Yes, we deal with finances,” explains Carruthers, “but there are all these auxiliary issues to talk about. We can’t do a good strategy without discussing them, because our work is client centered, not product centered.”

An attorney Most financial strategies will include elements that will need an attorney’s expertise. An attorney who has experience with special needs will know how to structure wills, powers of attorney (medical or financial) and trusts so they work in conjunction with the complete financial strategy. Attorneys also help establish guardianships and handle other legal aspects of a family’s financial strategy.

The Process “We meet with individuals or a couple to review the financial situation,” explains Carruthers. “We also talk about their lifestyle, dreams, goals, and needs.” This information is the basis for beginning to work with the client to create a financial strategy, alerting them of precautions to take, and recommending options they have available. “It’s also an opportunity for the individual or couple to get an idea of what the process will be and to decide if they’ll be happy working with me,” she adds.

“Every client, every family, and every situation is different. I find it’s best for my clients and myself to get to know each other a bit first, then move along at a pace that’s comfortable for the client. But if time is of the essence regarding getting a piece of their financial strategy in place, I’m there to help provide support and move them along.” The next step might be a meeting to discuss financial details, review statements, policies, and other paperwork, and begin making recommendations for the strategy. Or the clients may decide they’d first like to complete a letter of intent for their child with special needs. This is a document that details personal, medical, and social information so another person can step in at any time to provide care. Having this document completed often relieves parents of a great deal of stress knowing that if an emergency situation makes them unable to provide care themselves, their child will get the necessary care with the least amount of disruption to personal or medical routines. What we include in the strategy, how we go about getting it done, if and when an attorney becomes involved, and how long the process takes varies with each client. “It’s a personal thing,” says Carruthers. “We don’t simply meet with a client and drop them into Plan A, B, or C. We work together to be sure the strategy takes care of the person with special needs as well as the entire family.” She adds, “In fact, the strategy is never really complete because as life changes, so might your strategy. It’s a work in progress.”

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Jump into the water with a Special Care Planner We seem to lead our lives full steam ahead, sometimes pushed along by life events, sometimes by the choices we make. Our lives are cram-packed with activities and responsibilities, days never long enough to get everything done or so stressful they seem like they will never end. Sometimes even the important things don’t get done. Making time to create your financial strategy will help provide sense of accomplishment, relief, and reassurance that one of the important things has been put in place. So you can feel a little less stressful, a little more peaceful, with a strong footing beneath you.

1 Chartered Special Needs Consultant (ChSNC®) – a professional designation awarded to those individuals who’ve completed 120 hours of academic classes in addition to holding either Chartered Life Underwriter (CLU), Chartered Financial Consultant (ChFC) or Certified Financial Planner (CFP) designations and may have previously completed the Special Care Planner certification program. The ChSNC designation was developed by The American College in Bryn Mawr, Pennsylvania. The certification program and the professional designation evolved from MassMutual’s SpecialCareSM Program. 2 The Special Care Planner receives advanced training and information in estate and tax planning concepts, special needs trusts, government programs, and the emotional dynamics of working with people with disabilities and other special needs and their families. The certificate program was offered by The American College in Bryn Mawr, PA, exclusively for MassMutual financial professionals. No one professional can provide everything a family needs. An integrated team comprised of, an attorney, a CPA, and others, such as social workers and caregivers, and a Special Care Planner or other financial professional who specializes in working with special needs, all working together is the best way to serve the client. We recommend you choose to work with professionals who are qualified, experienced, and involved in the area of special needs. 3 www.wisconsin.massmutual.com

* The Special Care Planner received advanced training and information in estate and tax planning concepts, special needs trusts, government programs, and the emotional dynamics of working with people with disabilities and other special needs and their families. The certificate program was offered by The American College in Bryn Mawr, PA, exclusively for MassMutual financial professionals. State insurance departments recognize that the Special Care Planner certificate program provides essential information on the profession of special care by granting continuing education (CE) credits (varies by state). A Special Care Planner through MassMutual’s SpecialCareSM program can assist parents in drafting Letters of Intent and can help make a difference in the quality of life for an individual with special needs, their caregiver and other family members. Through SpecialCare you will learn valuable financial strategies, identify financial strategy solutions, access vital information, and meet certified specialists who will work with you and your professional advisors – your banker, accountant or financial planner, lawyer, social workers and health care providers – to review your financial picture and offer options to fit the needs of each situation. For more details, visit MassMutual’s website at http://www.MassMutual.com/specialcare, or call 1-(800)-272-2216.

About MassMutual Built on more than a century-and-a-half of financial strength and customer service, Massachusetts Mutual Life Insurance Company (MassMutual) is a leading mutual life insurance company headquartered in Springfield, MA. We operate for the benefit of our members and participating policyholders1 and offer a range of quality financial products and solutions, including life insurance, disability income insurance, long-term care insurance, annuities and retirement/401(k) plan services. Our family of companies in the MassMutual Financial Group includes: Babson Capital Management LLC and its subsidiary Cornerstone Real Estate Advisers LLC, Baring Asset Management Limited, First Mercantile Trust Company, MassMutual International LLC, MML Investors Services, LLC, The MassMutual Trust Company, fsb and OppenheimerFunds, Inc. The information provided is not written or intended as specific tax or legal advice and may not be relied on for purposes of avoiding any Federal tax penalties. MassMutual, its employees and representatives are not authorized to give tax or legal advice. Individuals are encouraged to seek advice from their own tax or legal counsel. Individuals involved in the estate planning process should work with an estate planning team, including their own personal legal or tax counsel.

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ORGANIZATION SPOTLIGHT

TUBEROUS SCLEROSIS ALLIANCE One Mother’s Letter to Exceptional Parent in the 1970s Built a National Organization This rare genetic disease may hold the key to unlocking the cure for epilepsy, autism and even cancer. BY JAYE D. ISHAM ecause one mother refused to take no for an answer, scientists now know tuberous sclerosis complex (TSC) is a linchpin disease, which simply means insights gained from the study of TSC directly impact our understanding of other major diseases. Back in 1971, a young 23-year-old teacher named Susan McBrine gave birth to her first daughter, Stacia. When Stacia was three weeks old, Susan saw some funny white spots on her baby. At around eight months old, Susan began noticing her daughter starting to jerk her head down in a series of movements, crying constantly. According to Susan, she made several “frantic trips” to doctors, who each told her nothing was wrong. But Susan refused to believe it. “Finally, one day, Stacia had eight separate instances of jerking her head and body in a series,” Susan remembers. “I was alone with her and decided I was not going to take no for an answer any more. I drove to the emergency room and, probably hysterically, told the doctor there that I wasn’t leaving until someone told me what was wrong with my baby! Weirdly enough, the emergency room had a patient, 12 years old, with tuberous sclerosis complex, or TSC.” The physician recognized the white spots and Susan’s description of the infantile spasms her child was having. He bluntly told Susan her daughter had TSC and would be “handicapped” meaning Stacia would not walk or talk and perhaps not live much

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longer if her seizures weren’t controlled. other parents. They wrote and mailed Susan says she “cried all the way home.” homemade newsletters and dreamed big. After a pediatric neurologist confirmed In 1975, the efforts of those four moththe TSC diagnosis, Susan started to ers paid off with the official incorporation research the disease in many libraries, of a non-profit called the National poured over medical Tuberous Sclerosis journals, books about Association (NTSA), mental disabilities which is now known and information on as the Tuberous epilepsy only to disSclerosis Alliance (TS cover what was writAlliance). ten about TSC was “We knew if we minimal; the internet were determined certainly didn’t exist The TS Alliance’s mission is to find a cure enough we could in the 1970s. for tuberous sclerosis complex while make a difference,” Moreover, TSC was improving the lives of those affected by: Susan recalls. “We considered extremely (1) developing programs, support talked to regional services and resources information; (2) rare, and no real centers, hospitals, stimulating and sponsoring research; research or awareness and child neuroloand (3) creating and implementing had occurred in more public and professional education gist associations, than 100 years since it programs designed to heighten and we helped get was first discovered. articles in magaawareness of the disease. zines and newspaTAKING ACTION TO MAKE A pers. We also hoped for a celebrity to DIFFERENCE endorse us. We lived and worked on NTSA “Eventually, I just got angry so little was for years. Then slowly we let go and let othknown,” Susan asserts. “Then my sister ers take it over when it became a successtold me about a magazine called ful reality.” “Today, the TS Alliance employs a profesExceptional Parent, so I wrote a letter to it asking for other parents with TSC kids to sional staff of 14, funds around $2 million contact me.” Within two weeks, she each year for research, and offers a wide received 15 replies from across the coun- range of support and education programs try; three were from other mothers in for anyone touched by the disease,” says California where Susan lived, so they got Kari Luther Rosbeck, who has served as the together to meet one another and share organization’s President and Chief stories. Eventually, they started calling Executive Officer since late 2007. www.eparent.com/EP MAGAZINE • October 2013 25


ABOUT TUBEROUS SCLEROSIS COMPLEX Affecting around 50,000 in the United States and nearly 1 million worldwide, tuberous sclerosis complex (TSC) is a rare genetic disease that causes tumors to form in vital organs, primarily the brain, eyes, heart, kidneys, liver and lungs. It’s also the leading genetic cause of both epilepsy and autism, and many children develop neurocognition and behavioral problems due to the disorder. Currently there is no cure. “What’s so distinct about TSC is that it is incredibly variable, affecting each individual differently, even identical twins,” Kari explains. “For example, some people with TSC face the possibility of a lifetime of seizures, developmental challenges and intellectu-

“Starting with those four moms back in 1974, the TS Alliance’s growth over the years can truly be attributed to a stunningly small group of people who locked arms and devoted their lives to something bigger than themselves. It was basically the sheer willpower of parents, adults with TSC, medical and clinical professionals, staff and others who decided they could make a difference, and we have.” Over the years, the TS Alliance has funded more than $17.4 million in support of basic, translational and clinical research. Because of its advocacy for research and promoting young investigators, the organization funded and cultivated a new generation of senior scientists who today receive generous funding from

DETERMINED TO MAKE A DIFFERENCE Above left: Stacia McBrine, at age 3; Lower left: At her last birthday. Above right: TS Alliance President and Chief Executive Officer Kari Luther Rosbeck: “We continually focus on the founding moms’ original goals to provide fellowship, increase awareness, pursue knowledge and provide hope for anyone touched by the disease.”” al disabilities, and they may require dependent care their entire lives. Others, however, are able to live and pursue healthy, totally independent lives or may even go undiagnosed until adulthood, if at all.” Many people with TSC say it’s like walking through a minefield because they never know when or what will happen next. “That’s an incredible burden for the TS Alliance’s constituents,” Kari continues, “so we continually focus on the founding moms’ original goals to provide fellowship, increase awareness, pursue knowledge and provide hope for anyone touched by the disease.”

GROWTH OF THE ORGANIZATION LEADS TO MAJOR DISCOVERIES The TS Alliance is just that: an alliance of people who have the disease, of those who have a family member or friend with the disease, of those who are caring for or treating someone with the disease, and of those who are trying find new treatments and a cure for the disease. Kari says the organization’s story is really one of determination. 26 October 2013 • EP MAGAZINE/www.eparent.com

sources such as the National Institutes of Health and the Department of Defense Congressionally Directed Medical Research Program. Due to the strength of grassroots volunteers, more than $171 million has been spent on TSC research over the past 11 years from these important sources. “In our quest to find a cure, funds provided by the TS Alliance over the last decade have contributed to a number of significant scientific breakthroughs,” Kari explains. “TS Alliance-sponsored research helped support the identification of the two genes that cause TSC, developed a genetic test and initiated the first clinical trials in TSC.” In 2010, the U.S. Food and Drug Administration (FDA) approved the first drug specifically for TSC that shrinks brain tumors. In 2012, the FDA approved a second indication for this drug to shrink kidney tumors associated with TSC. “Of the approximately 6,800 identified rare diseases such as TSC, we are especially proud to be among 340 with specific treatments,” Kari reflects. “The availability of these new treatment options have been a true blessing for our community, who for so


many years have faced incredibly challenging medical decisions that often involve complicated care options. Now they have more choices, and we hope – and believe – these recent discoveries are just the beginning.” More broadly, scientists and medical professionals now know, without a doubt, TSC is a linchpin disease. This simply means that insights gained from the study of TSC directly impact the understanding of other major diseases like epilepsy, autism, diabetes and even cancer. Therefore, new treatments in TSC may lead to new treatments in other diseases. “So the TS Alliance is fighting for a cure that could literally lead to more cures, which is an incredibly important part of our orga-

ference focused on updating guidelines for the diagnosis, surveillance and management of TSC. Because TSC involves multiple systems in the body, the conference included specialists in genetics, neurology, epilepsy, cardiology, neurodevelopment and behavior, dermatology, dentistry, nephrology, pulmonologist, ophthalmology, gastroenterology, endocrinology and others. “Prior guidelines were based on a 1998 TSC consensus conference, and since then, tremendous advances have been made in the field of TSC, particularly in the growth of new treatment options,” Kari explains. “We believe these new clinical consensus guidelines are the ‘international gold standards’ that will improve the quality of life of everyone touched by this disorder.”

DREAMS REALIZED The TSC Walk at the National Mall. “The TS Alliance has now become everything we dreamed about so long ago,” beams Susan McBrine. “We have a staff, TSC clinics, a medical advisory board, genetics testing, broad research, a magazine, a bonafide celebrity spokesperson (Julianne Moore among others), fundraising, and chapters all over the country.” nization’s impact on medical research in general,” says Kari. “In fact, both the New York Times and Boston Globe recently wrote stories about a current TSC clinical trial as well as the link between TSC, autism and cancer.”

BEYOND RESEARCH While research is critical, people with TSC often require emotional support, information on treatment options, local resources, disease-specific educational materials, medical choices and a myriad of other needs. The TS Alliance helps them with all of these through a comprehensive website, a network of 35 TSC Clinics across the country, peer-to-peer support programs, multiple social media platforms, educational conferences and webinars, and local support through more than 30 volunteer branches called Community Alliances, which provide opportunities to meet and interact with other individuals with TSC and their families. On the care and treatment front, the TS Alliance convened 79 TSC experts from 14 countries in 2012 for an International TSC Clinical Consensus Conference, held in Washington, DC. This con-

COMING FULL CIRCLE “The TS Alliance has now become everything we dreamed about so long ago,” beams Susan. “We have a staff, TSC clinics, a medical advisory board, genetics testing, broad research, a magazine, a bonafide celebrity spokesperson (Julianne Moore among others), fundraising, and chapters all over the country.” Susan’s daughter lived until 2003. “She was 32 and the end was very hard as her only remaining kidney was so full of tumors caused by TSC that nothing could be done,” she says. “But knowing the TS Alliance is making strides in treating TSC gives her life – and her death – meaning. I’m so grateful for the work TS Alliance volunteers and staff do daily. I feel so fortunate to see a dream become reality. I hope this story helps someone today. And I hope Stacia is smiling down on all of us!”• ABOUT THE AUTHOR: Jaye D. Isham is Vice President, Communications Strategy at the TS Alliance.

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EMPL YMENT & TRANSITI NING

Overcoming Obstacles to Employment ERNST O. VANBERGEIJK, PH.D., M.S.W. Editor’s Note: *To protect the privacy of the graduates mentioned in the article, the author used pseudonyms in place of their true names.

were available for work, and were actively looking for a job in the four weeks preceding the survey. These are non-institutionalized, oung adults who have recently graduated from college are civilians who take part in their community survey. This does not facing one of the toughest economies in modern history. include the individuals with a disability who are institutionalized Despite having a college degree, over 26% of young males or have simply given up on seeking employment. Anecdotal (under age 29) were unemployed in 2009 (Bureau of Labor reports suggest individuals on the autism spectrum have an unemStatistics, 2013) b. This was double the unemployment rate for ployment rate exceeding 90%. females ages 20 to 29 who recently graduated from college. The Should people with disabilities simply give up when it comes to situation improved somewhat by 2011, however, over 12.6% of seeking employment? The answer is a resounding, “No!” Recent recent college graduates were still unemployed. Countless num- research published in the Journal of Autism and Developmental bers of these young people are forced to move back home to live Disorders suggests that vocational training can be an effective with their parents. On average it is taking recent college graduates intervention with young adults on the autism spectrum when it 6 months to one year to find employment. comes to employment. The importance of the study cannot be The good news is that our economy is expected to produce over understated. It is the first randomized clinical trial of vocational 8.6 million job openings between 2010 and 2020. The bulk of training. This means study subjects were randomly assigned to these jobs will be in education, business, and computer science. either the vocational training program (known as the treatment (Bureau of Labor Statistics, 2013)a. However, the unemployment group) or no intervention at all, i.e., the control group or “business rate does vary by field of major with education majors having an as usual” which meant the completion of high school. The young unemployment rate of roughly 5% and humanities majors having adults with autism were trained in jobs at local hospitals which an unemployment rate of over 12% (Bureau of Labor Statistics, required a high degree of repetition, but were more than simple 2013)a. entry level jobs. According to Wehman et al (2013) the internships What about young adults with disabilities? What about people were in an expanding portion of our economy – the health industry: who cannot earn a degree? The statistics are confusing. Most of the Departments where internships occurred included neonatal and information we have on unemployment is anecdotal, especially pediatric intensive care units, diabetic wellness units, the hospilooking at specific disabilities. Large scale epidemiological tal pharmacy, coronary care unit, environmental services, research is hard to come by. According to the U.S. Department of ambulatory surgery, and others. The job tasks and settings were Labor, the unemployment rate for persons with a disability was atypical for youth with significant developmental disabilities 13.4 percent in 2012, higher than the rate for persons with no disand ASD who historically have been placed in entry-level servability (7.9 percent) (Bureau of Labor Statistics, 2013)c. The ice jobs in hospitality and cleaning industries. At the same time, methodology masks the real unemployment rate. According to the the internships were largely composed of high level, repetitive BY NATASHA BONHOMME AND ELIZABETH KARAS Bureau, unemployed persons are those who did not have a job, tasks that require a high attention to detail and an intensive

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focus on order and structure to complete successfully. The results were astonishing, “…21 out of 24 (87.5 %) treatment group participants acquired employment while 1 of 16 (6.25 %) of control group participants acquired employment” (Wehman, 2013). These preliminary results are encouraging. The indications are that vocational training can positively impact employment for people with disabilities and this is the first randomized clinical trial to support vocational training as an intervention for unemployment among people with autism. It also refutes the long standing acceptance of the unemployment rate for people with disabilities to be 50 to 86% as normal (Wehman, 2013). However, it should be noted that the study was conducted with a relatively small sample size. Chiang, Cheung, Li, & Tsai (2013) study reveals other important predictors of employment for students with disabilities who leave high school. Many of the predictors of employment were demographic in nature, e.g., household income, gender,

parental education, etc. As one might suspect students with autism whose household income was high and whose parents’ educational level was a bachelor’s degree or higher were more likely to participate in employment. Male high school leavers in this study were less likely to participate in employment than their female counterparts. Some predictors were disability specific such as level of social skills or the presence of an intellectual disability. Again, as one would suspect, students with autism who were high school leavers that possessed higher social skills and those without an intellectual disability participated at higher rates in employment. Three predictors in this study were directly related to education. Those were whether or not the student graduated from high school, whether or not the student received career counseling, and whether or not the student’s school con-

tacted postsecondary vocational programs or potential employers on behalf of the student. None of the results pertaining to education are surprising. Students who graduate from high school are more likely to work. Likewise, students who received career counseling and those whose schools contacted postsecondary vocational programs or potential employers were more likely to be working. The implication of the last two findings is that the transition plans of the student’s Individualized Education Program should contain specific goals centered upon career counseling sessions, and referrals to postsecondary vocational or transition programs as well as potential employers. Ideally, starting at age 16, the transition plan should include opportunities for internships and/or paid employment. Benz et al. (2000) investigated predictive factors of positive postsecondary outcomes (e.g., engagement in employment or continuing education) of students with disabilities (including six individuals with autism) exiting high school during the 1997–1998 school year and found that having two or more jobs and having completed four or more transition goals while in high school were predictive of positive postsecondary outcomes (as cited in Cheung et al, 2013; p. 1833). Having paid employment during high school for students with disabilities is a predictor of later employment post high school.

People with disabilities face obstacles in the hiring process and have to make their own employment opportunities.

Success Stories Evan* attended a public high school in the northeastern United States. His guidance counselor referred him to a vocational program, which he attended for three years. While at the vocational program Evan had the opportunity to participate in a variety of internships including some in retail stores and in food service operations. While in the vocational program Evan also followed a curriculum that taught him life and social skills in addition to vocational skills. His passion, however, was in various modes of transportation. After graduation 30 October 2013 • EP MAGAZINE/www.eparent.com


Evan used family contacts to secure a job at a car dealership where he detailed automobiles. Evan worked for the dealership for approximately five years. Then he decided to move to the Midwest with a significant other. Evan took the skills he learned at the dealership and decided to start his own business. He started his own auto detailing business which supports him today. This is an example of an entrepreneurial model of employment. According to the U.S. Department of Labor, people with disabilities own their own businesses at a rate twice that of non-disabled individuals. The thought behind this trend is two-fold. First, people with disabilities face significant obstacles in the hiring process. Many cannot even get an initial interview, let alone make it through the first round of interviews. Consequently, they have to make their own employment opportunities. Second, despite the existence of the Americans with Disabilities Act of 1990, many people with disabilities are still not receiving the reasonable accommodations they are entitled to under the law. By owning their own businesses, people with disabilities can guarantee receiving the reasonable accommodations they need to be successful employees. Jeffery* went to a private school in the Southeastern United States. His parents conducted a thorough internet search for vocational or transition program as recommended by the school guidance counselor. Jeffery had a series of paid jobs throughout high school including owing his own disc jockey business. He and his parents visited a number of transition programs and decided he should attend a U.S. Department of Education approved Comprehensive Transition and Postsecondary (CTP) program in the Northeast. Jeffery opted to follow a vocational concentration in the program rather than an academic credit bearing concentration. He had an interest in hotel hospitality. The program placed him at an internship in an international hotel chain. Jeffery made an effort to get to know his supervisor at the hotel who acted as a mentor to him. He tried to learn everything he could about the specific hotel corporation as well as the hospitality industry in general. Jeffery is social and the hotel industry was a good match between his strengths and outgoing nature as well as the demands of the work environment. By Jeffery’s second year at the internship he was promoted and worked in a number of different departments. Before the summer vacation started Jeffery asked his supervisor for a letter of reference. He had the specific name of the person in human resources to see at the hotel from the same company as his internship. However, this was in his home town. Jeffery excelled at his summer job. In fact, his boss at the hotel in his home town offered him a full-time job with benefits at the end of the summer. Jeffery, in consultation with his parents decided not to return the Comprehensive Transition and Postsecondary (CTP) program; he had achieved his goal of obtaining full-time employment. One year later Jeffery received a promotion and transfer to what he described as his “dream job.” He was transferred to the company’s hotel in the Bahamas where he continues to work to this day. Learning how to work was not necessarily difficult for Lana*. What proved to be difficult for her were the social aspects of work. Lana was painfully shy and socially awkward. She had anxiety about social situations that would overwhelm her. What Lana

needed to learn was how to cope with her anxiety and social awkwardness. She also needed to learn independent living skills like budgeting and banking, laundry, and cooking. She and her family identified a vocational program that was residential in nature, where she could learn social skills, anxiety management techniques, cooking, and learn a vocation. Lana had an affinity for organizational skills and computers. Her internship at the program was in the medical records department of a university hospital. Lana honed her office skills and did so well that she was hired by the department where she worked for seven years. Lana learned as much as she could about office work, but also learned about the university system and the roles of other departments. Lana, through her newly developed social skills and social network learned of a job opening in another department. She applied for the job and got it. For the past five years Lana has worked in the bursar’s office at a major college. Each of these individuals is a success story who used his or her social networks to obtain jobs. They each attended postsecondary vocational or transition programs whose internships not only taught jobs skills, but also social and independent living skills. Job experience through internships taught them how to handle the social aspects of the work environment and paved their way to competitive employment. A key aspect of their success was their ability to identify their interests and strengths and apply those to a career. By going through this process of finding vocational training, learning social and independent living skills, identifying their strengths and interests and obtaining valuable work experience these individuals were able to overcome obstacles to employment.•

People with disabilities own their own businesses at a rate twice that of non-disabled individuals.

ABOUT THE AUTHOR: Ernst VanBergeijk is the Associate Dean and Executive Director, at New York Institute of Technology Vocational Independence Program (VIP). The Vocational Independence Program is a U.S. Department of Education approved Comprehensive Transition and Postsecondary (CTP) program. www.nyit.edu/vip Dr. VanBergeijk also administers Introduction to Independence (I to I) a seven week summer college preview program for students ages 16 and up.

References Bureau of Labor Statistics, U.S. Department of Labor, Occupational Outlook Quarterly (Summer, 2013) a, College to Career: Projected Job Openings that typically Require a Bachelor’s Degree. Bureau of Labor Statistics, U.S. Department of Labor, The Editor's Desk, The job market for recent college graduates in the United States on the Internet at http://www.bls.gov/opub/ted/2013/ted_20130405.htm (visited September 17, 2013)b. Bureau of Labor Statistics, U.S. Department of Labor, The Editor's Desk, Labor force characteristics of persons with a disability in 2012 on the Internet at http://www.bls.gov/opub/ted/2013/ted_20130618.htm (visited September 17, 2013)c. Chiang, H.M., Cheung, Y.K., Li, H., and Tsai, L.Y. (2013). Factors associated with participation in employment for high school leavers with autism. Journal of Autism Developmental Disorders, 43:1832–1842 DOI 10.1007/s10803-012-1734-2. Wehman, P.H., Schall, C.M., McDonough, J., Kregel, J., Brooke, V., Molinelli, B., Ham. W., Graham, C.W., Riehle, J.E., Collins, T.E., and Thiss, W. (2013). Competitive employment for youth with autism spectrum disorders: Early results from a randomized clinical trial. Journal of Autism and Developmental Disorders, DOI 10.1007/s10803-013-1892-x

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EMPL YMENT & TRANSITI NING How Customized Employment Can Improve Outcomes for Adults with Intellectual Disabilities The purpose of customized employment (CE) is to expand and maximize the range of job options for adults with ID and offer an alternative to segregated employment in sheltered workshops. CE can take the form of job carving, resource ownership and selfemployment. All three options enable adults with ID to increase their capacity for financial self-sufficiency.

BY RACHEL SILVERMAN he purpose of this article is to examine the employment conditions facing adults with intellectual disabilities and then explain an alternative job placement system called customized employment. Customized employment involves discovering the job seeker’s skills and interests and then negotiating with an employer to find the most suitable employment for this person. The outcomes of customized employment include job carving, resource ownership, and self-employment. The article concludes with a discussion of Project Search, a national program to train and employ adults with intellectual disabilities. Approximately 8 million people, or 3% of Americans, have intellectual disabilities. The employment outcomes for adults with intellectual and developmental disabilities remain poor. A recent study found that just 14.7% of such adults were engaged in paid, communitybased employment. Yet just 28% of unemployed adults with disabilities who want to work have a job goal in their employment plans. In addition, adults with intellectual disabilities who held paid, community-based jobs generally received low wages. Tom Heinz, founder of East Bay Innovations, said only half of employed adults with intellectual disabilities earned more than the minimum wage. Thus, even holding a paid job offered most adults with intellectual and developmental disabilities only limited opportunity for financial self-sufficiency and career advancement. One study showed that most adults with intellectual disabilities (ID) who are currently participating in sheltered workshops would like to join the mainstream workforce. Of those adults, 63% wanted to work outside a sheltered workshop. In addition, 82% of adults with ID believed they had the capacity for community-based employment, including 45% with support and 37% without support.

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The Discovery Process Traditional employment methods try to place adults with disabilities into pre-selected job openings from employers. In contrast, cus32 October 2013 • EP MAGAZINE/www.eparent.com

tomized employment (CE) offers an alternative and more effective method of helping adults with ID to improve their career outcomes. CE begins with a process of discovery that is designed to uncover the individual’s skills, interests and talents. The job developer also assembles a team typically consisting of the individual, family, and sometimes advocates or teachers to aid in the discovery process. During discovery, the job developer observes and interviews the individual and his or her family in natural settings such as the home and work environments to learn more about him or her as a person. The job developer observes how the individual interacts in both familiar and unfamiliar settings. The job developer may also interview teachers, siblings, parents, support professionals, and neighbors. The discovery process aims to identify three vocational themes that can provide possible sources of future employment. The themes are supposed to emerge naturally and gradually during discovery. Once the vocational themes are identified, then the job developer finds 20 local businesses that employ people in each of these three fields. The job developer brings the job candidate on informational interviews with prospective employers which are designed to gauge whether this type of work and social environment are appropriate for this individual. The goal at this stage is not to negotiate the creation of a job but, rather, to learn more about the types of businesses that might employ this job seeker. The purpose is also to clarify the job seeker’s employment interests. Once the job developer and job seeker have determined the types of positions and work environments that are suitable for the applicant, then the negotiation process with employers begins. The informational interviews are designed to build relationships with employers that can provide the foundation for this negotiation. The goal of the negotiation is to create a mutually beneficial solution that meets the needs of both the job seeker and the employer. The negotiation begins by identifying the set of tasks that the job seeker can perform and presenting an employment proposal to the prospective employer. Points for negotiation can include the job responsibilities, the location and hours where the job will be performed, and the types of support strategies and supervision that the job candidate will need. The proposal should offer specific benefits to employers such as allowing work to get done faster or more precisely, increasing employee productivity, and where possible, saving the employer money. The discovery process can better identify the most suitable employment for individuals with disabilities. For instance, William, 16, stated that he wanted to run his own business in the food serv-


ices industry. But the job developer observed that he was not well equipped to run his own hot dog stand. In addition, during a subsequent job at Subway, he could not handle the fast-paced, chaotic food industry environment. She saw that he performed well in a slower-paced atmosphere with specific direction and supervision. She negotiated a part-time job with a local car dealer that “involved preparing brand new vehicles for the showroom floor” (Condon & Brown, p. 2). William flourished at this job, which played to his strengths and allowed him to benefit from direct supervision. “He grins from ear to ear when asked about his job

employment. Job carving involves analyzing the tasks involved in a position and identifying the specific roles that an employee with a disability can perform. For example, a large department store hired Scott to unload and repackage new merchandise. His job developer identified this task as one that Scott could perform. The employer also benefitted from Scott’s work because it freed sales clerks from performing this manual labor so they could spend more time serving customers. Job carving works most effectively when the job developer understands how the business functions and develops solutions that directly benefit the employer.

empower the disabled job seeker by giving her control of the physical resources needed to perform her job. Resource ownership can expand the range of opportunities for an existing employee or create a position for a new employee. For example, an employee with a disability who works at a bowling alley purchases video equipment. The video equipment allows him to earn additional income by taping birthday parties and league events and selling the DVDs to customers. Resource ownership enables an employee with a disability to participate in the potentially lucrative profession of videography. Once he learns how to document birthday parties

and can describe with expertise and confidence what his work entails.” His mother said with pride, “He’s determining his own future” (Condon & Brown, pp. 2-3).Thus, the discovery process enabled the job developer to evaluate William’s skills and talents and to determine the underlying conditions which maximized his chances of employment success. Similarly, Bill initially told a job developer that his dream job was to rewind video tapes at Blockbuster. “Following the Discovery process Bill revealed that he really aspired to be a movie director, and this opened up discussions about entertainment, acting, theatrical production, etc (Hammis, Griffin, & Geary, p. 3). Thus, the discovery process empowered Bill to greatly expand the scope of his career interests and to develop much more ambitious professional dreams.

Resource ownership is another potential form of customized employment for adults with disabilities. “Resource ownership is a mutually beneficial process of acquiring materials, equipment, or skills that, when matched to a job seeker's interests and customer needs, generates profits for an employer and wages for the employee” (Hammis, SELF-EMPLOYMENT Griffin, Geary, Crandell, & CAN INVOLVE EITHER THE CREATION OF A B ro o k s - La n e, NEW VENTURE OR 2007, p. 1). A THE ARRANGEMENT mechanic who TO WORK WITHIN AN brings her tools EXISTING BUSINESS. to her employer’s garage is an example of an employee who is engaged in resource ownership. “Resource ownership counteracts the effects of disability stigma by suggesting a shared risk between the worker and the employer (and perhaps the funding agency), and a partnering approach to job creation” (Hammis, Griffin, Geary, Crandell, & Brooks-Lane, 2007, p. 1). The goal of resource ownership is to

with a videocamera, maybe he can develop the skills to make videos of weddings. Resource ownership can also create a job for a new employee with a disability. For instance, DC enjoys working with animals. Using funds from the VR system, he bought the equipment necessary to work as a dog groomer. He brings this equipment to work for Tim Brendel, owner of Tender Loving Grooming in Dallas, GA. DC works three days a week for five hours each. Resource ownership gave DC a part-time profession doing work that he enjoys. Self-employment also represents a potentially rewarding opportunity for adults with disabilities. The keys to successful self-employment include identifying a match between the job seeker’s passions and talents and existing market needs or niches in the community. In addition, the job developer must work with the job candidate to determine whether he or she is suitable for entrepreneurship. Self-employment can involve either the creation of a new venture or the arrangement to work within an existing business.

Job Carving, Resource Ownership & Self-employment The outcomes of negotiation can include job carving, resource ownership, and self-

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For example, Michael, 38, has cerebral palsy and cannot read, do math, or drive. Yet he has flourished by running his own vending machine business. He wrote a three-year business plan, and his duties “include filling the machines, sorting coin for deposits, making bank deposits, purchasing the inventory from local wholesalers, and attending business lunches with customers,” (Griffin & Hammis, p. 1). Michael successfully managed the key tasks in running his vending machine business. Michael also beamed with pride, stating that the business is “Mine!”. Michael’s successful venture demonstrates that self-employment can empower adults with intellectual disabilities. Blending funds from different sources can allow adults with disabilities to achieve their goal of self-employment. Over all, Michael received approximately $33,750 in financial support to start his business from the following BLENDING FUNDS FROM sources: ACCMH ($11,250 in funds and consulting), Social DIFFERENT SOURCES CAN ALLOW ADULTS WITH Security ($17,600), Vocational DISABILITIES TO ACHIEVE Rehabilitation ($2,900), Knights THEIR GOAL OF SELFof Columbus ($1,100), and comEMPLOYMENT. munity members ($1,000) (Griffin & Hammis, p. 3). ACCMH is the Allegen County Community Mental Health. He used the money from Social Security to buy a van, van ramp, six months of insurance, and a motorized lift cart to move the inventory. The VR support consisted of two used vending machines valued at $2,900. The ACCMH funding included $5,000 to purchase two new vending machines. Parents of adult children with disabilities can learn from Michael’s example about structuring the funding for their child’s dream of self-employment. A business-within-a-business arrangement occurs “when an individual with a disability operates his or her business within the physical space of an existing business.” (GVSU, p. 19). Usually the business started by the individual with a disability is connected with the industry of the established business. For example, Kevin, an adult with a developmental disability and a history of combative behavior, wanted to become a mechanic. No auto shop would hire a mechanic without experience, but one auto shop offered him space to dissemble and clean a few motors every week. Kevin paid a percentage of his earnings as rent to the shop owner. Kevin found a complementary business which allowed him to work in his field of interest as an auto mechanic. Kevin’s case also shows that even adults with disabilities and challenging behavior can be incorporated into the workforce by encouraging them to pursue their natural talents. Project Search is an innovative effort to place high school students with intellectual and developmental disabilities into competitive employment. Project Search is a year-long program that includes employment skills training and a series of three targeted internships in host businesses. Each job site hosts up to 12 students and is staffed by a special education teacher and one to three job coaches. One-third of the students find permanent positions with their host employers after completing the program. The program represents an outstanding example of cooperation between the vocational rehabilitation system, school districts, and employers. The 34 October 2013 • EP MAGAZINE/www.eparent.com

effort was started in 1996 by Erin Riehle, Director of Cincinnati Children's Emergency Department and is now available at 200 job sites in the U.S., Canada, Australia, and the UK. Through Project Search and similar efforts, adults with ID are now “employed as office assistants, medical technicians, textile machine tenders, furniture refinishers, sales clerks, cashiers, building maintenance workers, messengers and cooks” (Andrews, 2005, p. 72). Marcos Dimas, 22, landed a job with the AuditorController/Clerk-Recorder's office in Alameda County, California. He stated, “I loved getting to meet new people and learn new skills, like how to work in an office and how to communicate better. I was a person that would always doubt myself, but with the motivation of my coaches, the program has made me more confident" (Ramirez, 2013). Dimas has learned the social skills necessary to function in an office and has also benefitted from the help of his job coaches. The purpose of customized employment (CE) is to expand and maximize the range of job options for adults with ID and offer an alternative to segregated employment in sheltered workshops. CE can take the form of job carving, resource ownership and selfemployment. All three options enable adults with ID to increase their capacity for financial self-sufficiency. Project Search is dramatically widening the range of career possibilities for adults with ID and allowing them to build their self-confidence and more easily enter the mainstream workforce.• ABOUT THE AUTHOR: Rachel Silverman is an adult with autism. She is a writer, speaker, and advocate for adults with disabilities who focuses on employment issues. Her forthcoming article has been accepted for publication in the Autism Spectrum News. Her blog is located at www.aspergersoptions.blogspot.com. She is currently working on a book about ways to expand employment opportunities for adults with autism.

Bibliography “About Project SEARCH.” Project SEARCH. Accessed June 28, 2013. http://www.projectsearch.us/ About.aspx. Andrews, Linda Wasmer. “Hiring People with Intellectual Disabilities.” HR Magazine 50, no. 7 (2005): 72-77. Condon, Ellen & Kim Brown. “Using the Discovery Process to Custom Tailor Employment for William.” Rural Institute on Disabilities. Accessed June 26, 2013. http://ruralinstitute.umt.edu/transition/ art_William_TASH.asp. Grand Valley State University (GVSU). “Customized Employment.” Accessed June 26, 2013. http://www.gvsu.edu/cms3/assets/2CF6CA25-D6C6-F19E-339DC5CD2EB1B543/secondarylevellinkprograms/customized_employment.docx. Hammis, David & Cary Griffin, “Self-Employment: Michael J’s Vending.” Griffin & Hammis. http://www.griffinhammis.com/selfemploy/michael.asp. Hammis, David, Cary Griffin, & Tammara Geary. “Customized Employment FAQs.” Griffin & Hammis. Accessed June 26, 2013. http://griffinhammis.com/faqce.asp. Hammis, David, Cary Griffin, Tammara Geary, Doug Crandell, & Nancy Brooks-Lane. (2007). Resource Ownership: An Introductory Brief for Customizing Employment. Center for Social Capital. http://www.dol.gov/odep/ietoolkit/publications/332.pdf. Institute for Community Inclusion (ICI). (2012, Oct). “National Core Indicators (NCI) Data Brief, Working in the Community: The Status and Outcomes of People with Intellectual and Developmental Disabilities in Integrated Employment.” http://www.communityinclusion.org/pdf/Data_types_of_employment.pdf. National Center on Workforce and Disability (NCWD). “Employment Success for DC Through Resource Ownership.” OneStops.Info. Accessed June 26, 2013. http://www.onestops.info/article.php?article_id=430. Office of Disability Employment Policy (ODEP). “Negotiating with Employers.” Accessed June 26, 2013. http://www.dol.gov/odep/categories/workforce/CustomizedEmployment/practical/negotiate.htm “Our Program: FAQ.” Project SEARCH. Accessed June 28, 2013. http://www.projectsearch.us/Our PROGRAM/FAQ.aspx “Our Program: High School Transition.” Project SEARCH. Accessed June 28, 2013. http://www.projectsearch.us/OurPROGRAM/HighSchoolTransition.aspx. Ramirez, Mike. “Project Search Gives Nine Graduates a Means to Employment: Interns Have Chance to Gain Work Experience,” Contra Costa Times (Walnut Creek, CA), Feb 1, 2013, p. B6. Training and Technical Assistance for Providers (T-TAP). “Customized Employment Q&A: Assisting Adults with Intellectual Disabilities and Their Families to Pursue their Employment Goals.” Accessed June 26, 2013.http://www.t-tap.org/strategies/factsheet/assistingadults.html.


EMPL YMENT & TRANSITI NING

EMPLOYMENT OPTIONS THE CHOICE BELONGS TO THE INDIVIDUAL In the last few years, the shift is moving from a Sheltered Environment to employment for everyone in the communities in which they live. Obtaining community employment is a goal that we all hope is achievable. BY TERRY ARCHER BACKGROUND The shift from Sheltered Employment to obtaining Community Employment for all is a lofty goal and one that we all hope is obtainable. Let us look at some facts of both community and sheltered employment. In the 1960s, parents of individuals with disabilities wanted activities for their children who were graduating high school. Staying at home was not an option. Those parents worked together to start day programs for their adult children. They offered two types of settings: one was focused on arts and crafts, while the other dealt primarily with employment activities. In the 1970s, the programs that offered arts were struggling financially and sought financial support from the states. With government involvement, mandates that programs offer training to support individuals in work related activities soon followed. Thus, the focus to Sheltered Employment programs offering a wide variety of training activities. In the last few years, the shift is moving from a Sheltered Environment to employment for everyone in the communities in which they live. Obtaining community employment is a goal that we all hope is achievable. The community employment options can best be assessed by understanding the communities in which we live, the employment options within the communities and the choices for individual and their families.

DIFFERENT OPTIONS FOR DIVERSE NEEDS Community employment offers an individual who desires employment to seek that choice within the communities where they live. Those individuals have integration and broader choices in employment than those offered in a sheltered environment. Along with customized employment for the individual needs, these individuals work for an employer and earn minimum wage or higher, with the goal of tenure because of support from co-workers and managers. Again, we must look at the employment situation in the

communities that we live and at the individualized needs of the individuals we serve. Community employment is an option for those who choose this path of employment and who want to work in the communities in which they live. Community employment that requires one-on-one support is limited by available funding www.eparent.com/EP MAGAZINE • October 2013 35


and typically supports 20 to 30 work hours per month. Sheltered Employment offers specialized training and employment options for those individuals who, due to the disability or choice, prefer a secure setting. Sheltered Employment staff are highly trained to meet government and regulatory requirements. Sheltered Employment offers structure along with training in many related areas including social skills, communication, and a variety of work related skills such as staying on task, quality, and increase of production. Sheltered Employment can also provide personal care, oversight of medications, and behavior support, and includes a willingness to work with individuals who may have barriers preventing the community work environment. Staff has an understanding of individualized needs in order to support success. Sheltered employment may offer a longer program or workday, four to six hours a day, five days a week. Sheltered Employment offers families and providers respite knowing that the individual is in a protected environment with staff trained to support each employee’s individual needs. Sheltered Employment pays the individuals based either on a piece rate or on hourly rate depending on their own productivity. Often times their wages are below the state’s minimum wage rates. The agencies have to apply for and receive a 14(c) certification that allows them to pay this sub-minimum wage. Sheltered employment historically has been to support individuals that require the higher level of services; however, it can also be a choice for those individuals who for their own personal reasons do not want to participate in a mainstream work environment.

CHOICES ARE NEEDED According to Disability Scoop: “The jobless rate for those with disabilities fell to 14.1 percent in August, the Labor Department said Friday. That’s down from 14.7 percent the prior month. The drop in unemployment, however, may be at least partly due to 36 October 2013 • EP MAGAZINE/www.eparent.com

fewer people with disabilities looking for work, the data indicates. At the same time, unemployment for the general population dipped to 7.3 percent as the economy added 169,000 jobs, the Labor Department said. (“Unemployment Declines For Those With Disabilities,” September 6, 2013). “‘The harsh reality is that nearly eight in 10 working-age Americans with disabilities are unemployed,’ said Carol Glazer, president of the National Organization on Disability” (“New Federal Rule Aims To Boost Disability Employment,” August 28, 2013) If we continue to see the shift to Community Employment as the only option for individuals transitioning from high school to employment we will continue to see unemployment rates rise. Individuals will not find Community Employment due to the inability to obtain and sustain employment in their communities.

THE SHELTERED EMPLOYMENT OPTION If an individual works in sheltered employment, they are not considered competitively employed, earning minimum wage. The 14(c) certification is given to sheltered employment agencies who meet rigid Federal guidelines. These guidelines include a completed break down of the given job task along with start and end times. Per the Federal requirements, a standard must be set by using typically non-disabled individuals who are trained in the specific job and timed on how long it takes them to complete the job. Wage surveys must be completed annually to identify the wage that a trained individual would earn working in that similar field. Once the wage and the standard are identified, the individual with a disability is timed doing the same job in the same method used to set the standard. Their wage is then based on the production percent.

By way of example, ABC company employee assembles widgets and is paid $10/hour, the prevailing wage for that job. A skilled worker can complete 10 widgets in one hour so he is paid $1.00 for each widget completed. When a sheltered employed client works and produces a widget, he will be paid $1.00/widget, whether he can complete a widget in 10 minutes or if it takes him an hour to complete the widget. His pay is based upon the set standard of $1.00 per widget. Anytime an individual has a new position lasting longer than a month, a new timing will occur. If an hourly wage is needed, the same methods will be used setting the wage. Currently the Federal Government is reviewing the 14(c) certifications and would like to see this option faded out and all individuals earn minimum wage or above. If this happens, all Sheltered Employment options would cease to exist, which means any individual who wishes to choose this type of service will be turned away. Many Sheltered Employment agencies have already closed their doors.

THE CHALLENGE OF TRANSITIONING STUDENTS WITH PROFOUND NEEDS FROM HIGH SCHOOL Currently in the State of Washington, graduating students with disabilities are placed on a waiver immediately when community employment is obtained if they qualify for funding. If, however, the individual or parents would prefer Sheltered Employment as an option, they are put on a waiting list with a random yearly draw. This typically means those individual with the most significant disabilities, such as those with troubling behaviors and profound personal and support care needs are left to sit at home, and often will lose many of the skills that they had obtained while in a school setting. Idleness and limited work opportunities is not only isolating, but can prove dangerous. Studies have shown that people with disabilities are at least three times more likely to experience abuse than people without disabilities. Risk reduction requires knowing who the likely perpetrators might be. A


person with a disability is more likely to be abused by a family member or someone in their daily routine than they are by a complete stranger. (From Abuse of People with Disabilities by Nora J. Baladerian Ph.D, Thomas F Coleman, and Jim Stream). An individual with a significant disability who needs one-on-one support with community employment may never develop a trusting relationship with employment staff if they are only seen once or twice a weekly lasting an hour or two. Normally, such limited work hours do not allow enough time for an employee-employer bond , so that when abuse occurs, it is not voiced by the abused individual—or, in the case where abuse leads to a change in behavior, it will not be recognized by assigned staff as abuse because they don’t know the individual. The staff person may attribute a change due to the inconsistency of the individual’s daily activity. “Factors that appear to increase the vulnerability of this population include deficiencies of sexual knowledge, physical and emotional dependence on caregivers, multiple caregiving, limited communication skills and behavioral difficulties.” (National Disability Authority of Ireland). “Children with any type of disability are 3.44 times more likely to be a victim of some type of abuse compared to children without disabilities.” (The Arc of the United States). Isolation and abuse are real risks when employment options are limited, especially for individuals with profound developmental disabilities.

CONCLUSION Whether an individual and their family choose Community Employment or Sheltered Employment, it should be their choice recognizing that choices will change over time and as individual needs change. There are sound arguments for both employment options. The bottom line is individual choice. If the option for Sheltered Employment is removed then individuals with the highest level of need - those that require one-on-one support - will have very limited options for any employment related activities.• ABOUT THE AUTHOR: Terry Archer is currently the Supported Employment Manager at Yakima Specialties in Yakima Washington. She has worked in the field supporting individuals with all types of disabilities advocating for their choices whether or not it is a choice that she may agree to. Terry is a strong individual advocate believing in educating individuals and their families to ensure all options are reviewed, to ensure the best services are identified to meet the individual wants and needs. Terry started her career volunteering in a school district in Oregon later moving to California having oversight of a Pre-vocational and Group Supported program, then moving to Washington State working in Pre-vocational, Group Supported and Individual Community Supported Employment related activities as the Director of Employment. Yakima Specialties Inc. was formed by a group of parents developing a business model to offer employment related activities to their adult children who had disabilities, and wanted their adult children to be productive members of society. Yakima Specialties Inc. produces quality wood products; provides a medical laundry facility, commercial janitorial, and community placement activities, please feel free to visit our website at www.yakimaspecialties.com

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EMPL YMENT & TRANSITI NING Tips for Work Transitions for the Newly Unemployed AMERICAN OCCUPATIONAL THERAPY ASSOCIATION TIP SHEET BY DR. KAREN JACOBS, EDD, CPE, OTR/L, FAOTA, AND DR. LYNN SHAW, PHD, OTR. ngagement in meaningful and productive employment is important to health and ability to participate fully in everyday life. Work provides structure to daily routines and provides support for people to achieve their potential. Work also meets the basic financial needs to enable full participation. When a person experiences unexpected and unplanned job loss or loss of work, the physical health, emotional health and general wellbeing of the worker and their entire family is affected. Loss of work has a cascading effect, disrupting daily routines, causing financial instability, weakening social connections, and

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diminishes self worth by erasing a person’s work identity. Becoming unemployed begins a time period of uncertainty and change. It affects both men and women of all races, cultures, and socioeconomic backgrounds. Increased stress, anxiety and worrying about the ability to manage present difficulties and cope with the future unknowns can be overwhelming. But there are answers. Occupational therapy practitioners can provide support during this transition for workers and families and promote the process of regaining employment.

What can an occupational therapy practitioner do? • Recognize the realm and unique extent of the losses for each worker and family. • Recognize the health and well-being needs of the family as well as the worker that must be met during the transition back to work. • Provide strategies to enable and sustain daily routines of self and family. • Provide strategies to plan and manage time of self and family. • Provide mental health screening including for depression.

• Encourage worker participation in planning and management of work transition strategies. • Encourage worker reflection on and selfawareness of the impact of the loss to enable the identification of appropriate and useful stress management strategies. • Encourage employment goal setting through active consideration of the relevance and meaning of work, work capacities and future potentials.

• Encourage work resumption strategies such as developing new skills, networking skills, getting retraining and volunteering. • Encourage worker participation in knowledge exchange and social support with peers. • Encourage and create opportunities for worker networking and knowledge exchange. • Encourage worker in recreating a new worker identity.

Resources Download a printable version of this tip sheet! See more at: www.aota.org/en/About-Occupational-Therapy/PatientsClients/MentalHealth/Unemployed.aspx

What can the worker do? • Take time for self care as work transitions are physically and emotionally fatiguing. • Plan to go for daily walks or establish a physical exercise routine. • Consider potential short-term employment or volunteer opportunities. • Talk and share with family to involve them in managing daily life and planning for finding employment. • Talk with others who have lost work and

exchange strategies that help to cope and find work. • Network with family and friends and establish new connections. • Share with others your goals for work. • Find a mentor and ask them for feedback about your transition plans. • Be involved in finding and sharing information and thinking about which information is relevant to you. • Contact your local employment agencies.

ABOUT THE AUTHORS: This Tip Sheet was developed for the American Occupational Therapy Association by Dr. Karen Jacobs, EdD, CPE, OTR/L, FAOTA, and Dr. Lynn Shaw, PhD, OTR. Copyright © 2009 by the American Occupational Therapy Association. All rights reserved. This material may not be copied and distributed without prior written consent. For other uses, please e-mail praota@aota.org.

THE AMERICAN OCCUPATIONAL THERAPY ASSOCIATION Founded in 1917, the American Occupational Therapy Association (AOTA) represents the professional interests and concerns of more than 140,000 occupational therapists, assistants, and students nationwide. The Association educates the public and advances the profession of occupational therapy by providing resources, setting standards including accreditations, and serving as an advocate to improve health care. Based in Bethesda, Md., AOTA’s major programs and activities are directed toward promoting the professional development of its members and assuring consumer access to quality services so patients can maximize their individual potential. For more information, visit www.aota.org. The American Occupational Therapy Association• 4720 Montgomery Lane • Bethesda, MD 20814-3425 • 301-652-AOTA (2682) 38 October 2013 • EP MAGAZINE/www.eparent.com


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Editor’s Note: EP (Exceptional Parent) first came across the picture of Avery Lambert on Facebook just this past summer. We immediately knew that we had to contact the young girl’s parents to seek permission to publish the shot in our magazine. After a quick web search, we discovered that an article had been written about the photo, which is still going viral after a few years. We are reprinting, with permission from the author, “The Story Behind THAT Picture”— and, along with it, the beautiful pictures taken by Maria Hey, which includes this month’s cover. Last but not least, we wanted everyone to meet Avery’s adoptive parents, Ginger and James Lambert and, so, invited them to write their piece on “Life with Avery” for EP’s readers. In commemoration of Down Syndrome Awareness month this October, we present you with this wonderful collection of photos and stories about an exuberant girl named Avery whose smile lights up lives. – Vanessa B. Ira

Ginger’s friendship with Maria started out as something as simple as a hobby that they enjoyed together. From there, one child’s fate would be changed forever. BY LAURA NIVIN • ALL PHOTOS BY MARIA HEY his picture has been circulating around the Internet for quite awhile. It went viral after it was posted on the International Down Syndrome Coalition’s (IDSC) Facebook page. It was part of a campaign to promote awareness of those with DS. It was a collaboration between the local Down Syndrome Association of San Antonio and the IDSC. I can think of a couple of reasons why it touched so many people’s hearts. The little girl in the picture is simply adorable. And the saying on her shirt, “Am I Rockin’ This Extra Chromosome or What?!” sends a message of acceptance with the perfect amount of humor and sassiness. There have been countless friends of mine that have posted this same picture on my Facebook wall. They knew that I would enjoy the picture and most of them said some-

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thing sweet about our own Catherine who they know to be about the same age of the girl in the picture. They had no idea that we actually knew Avery. This picture was taken at the local Buddy Walk back in 2008. Her mother had the shirt custom made for her specifically to wear to the fundraiser. She wanted something that would fit Avery’s personality as she led her team in the annual walk to raise funds for research and support for the local organization. And when the San Antonio office of the Down Syndrome Association provided IDSC this picture to place on their social media outlets, it took the Internet by storm. That little face stole hearts with every single click and pin. A few weeks ago, when someone else posted this same picture on my wall with another note about how much they enjoyed the


message on her shirt, I thought it was time for me to share the whole inspirational story behind that precious smile. When Ginger Lambert first moved to San Antonio with her family 16 years ago, she would instantly meet a fellow mom that shared her love of scrapbooking named Maria Hey. They both had oneyear-old babies at the time and would soon become the best of friends. Maria was also expecting her third child and she also had a two-year-old son, Gabriel. Over the next few years, they spent countless hours together with each other’s families. They watched their children grow up together. Their daughters, Rachel and Hannah became the best of friends as well. Ginger and her husband James would later add to their family when they adopted their son John. It is through this long and loving friendship of these two women and their families, an unborn baby would find her forever home. In 2005, the Down Syndrome Association of San Antonio (now of South Texas) organization was staffed completely by parent volunteers. When a phone call was received about a teenager seeking assistance in finding someone to adopt her child who had recently been diagnosed with Trisomy 21 while still in the womb; the parent on call that day knew exactly who to reach out to first. Maria and Peter Hey’s oldest son Gabriel was born with Down syndrome. Since the time he was two years old, James and Ginger Lambert had been involved in watching him grow up. Not only had they been in attendance for a lot of the social activities at the DSASA, James’ company was providing free office space to this non-profit organization. When Ginger and James hung up the phone after getting the details from a very nervous teenage mother-to-be, they brought their family of four together to talk about whether they should

adopt this baby who they knew to have Down syndrome. And they prayed for guidance. After considering their own ages at the time of adoption, potential medical risks of a baby born with DS as well as the costs associated with it and the stress of starting all over again when their children were already school age; they knew this was all in God’s divine plan for them. Through Ginger’s friendship with Maria that started out as something as simple as a hobby that they enjoyed together, one child’s fate would be changed forever. A few months after agreeing that the Lambert’s would adopt her daughter that she knew to have special needs, this teenage mom placed her infant into the arms of her new mom and dad; her forever family. And it was at that moment that James and Ginger knew that their family was complete. What some people might consider to be a burden in adopting a baby with special needs, this family saw only the love they had experienced in watching Gabriel all those years. A family of four became a family of five. And Avery continues to make them smile. Seemingly unaware of how different her life might have been. But fully aware of the love that she shares with her brother and sister. In this new Internet era of viral pictures, videos, tweets, pins and clicks, it is still important to stop and take the time to read the entire story. A story of friendship. A story of love. A story of acceptance. Every picture tells a story and this one is indeed worth sharing.• Article Copyright © by Laura Nivin, From the Livin'Sassy website, 01/10/13 Photos Copyright © by Maria Hey Photography

ABOUT THE AUTHOR: Laura Nivin is a mother of three, wife of an economist, and the writer and creator of www.livinsassy.com. She is pictured here with Catherine, who has Down syndrome. Catherine has a twin sister, Savannah.

ABOUT THE PHOTOGRAPHER: Maria Hey is photographer by HEART and a veterinarian by trade. After graduating from Texas A&M University, Maria says, “God blessed my husband and me with three wonderful children.” As they grew, so did Maria’s passion for photography. Dissatisfied with everyday snapshots of their significant moments, she studied and practiced until she was able to capture their personalities in heirloom-quality portraits. This process illuminated two fascinating insights for her: that she prefers to photograph individuals; youth, high school seniors, adult professionals, and pets. Also, photos taken in an engaging environment are more expressive. This has allowed her to seek each person’s distinct and memorable character; artistically capture their personality; and, most important of all, to reveal the beauty that God sees in them. It’s about bringing out mood, joy, and attitude. Viisit Maria’s website at: www.mariaheyphotography.com Maria Hey’s biography by Nan Masters. www.eparent.com/EP MAGAZINE • October 2013 41


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LIFE WITH AVERY BY JAMES LAMBERT AND STACY KOCUR • PHOTOS BY GINGER AND RACHEL LAMBERT

“While we try to teach our children all about life, our children teach us what life is about.”

– Angela Schwindt ne of the advantages of being able to look back over the past is to be able to see how life is better in so many ways because of something that seemed difficult or scary. Bringing a child with Down syndrome into our family was one of those moments. Fear of the unknown, fear of the future, fear that we may not be able to properly care for and raise this child seemed so overwhelming at first. However, when Avery came, it was clear that she was much like our other children. She needed to be fed regularly, have diapers changed, baths taken, and be held and loved. No different than any other child on earth. Differences would eventually appear but, by then, Avery did not have an unknown future. When presented with the opportunity to complete our family with the adoption of Avery, we did consider the realities: another

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baby would be hard. We’d just made it through the toddler years and were getting comfortable with restful nights and predictable days again. This new baby would throw us into chaos, and for a few more years than our other kids had. There would likely be some health issues, some therapies we’d have to consider, and a bit of a learning curve. But other than that – all we could think of was the beating heart of a beautiful baby girl who needed a forever home. We were privileged to be called. The thing is, Avery is just like our two oldest kids, it’s just that things with her are a bit... magnified. The perception about people with Down syndrome is that they’re “always happy, always affectionate, always passive and agreeable.” A lot of the time, that’s spot on. Avery is joy personified. She has this inner radiance that just lights up a room. People are drawn to her because she has a way


AVERY SQUEEZES EVERY MINUTE FROM EVERY DAY. SHE WELCOMES GUESTS WITH FULL-FACE KISSES.

SHE GREETS STRANGERS AS THOUGH THEY’RE LIFE-LONG FRIENDS.

of drawing people in. She’s exuberant and unapologetic about her enthusiasm for life. Like… running into the ocean fully clothed. Like taking your face in her small hands and covering it in soft, sweet kisses. Or for her obsession with the movie “Annie”. When she’s happy, the whole world is happy with her, and for her, and about her. She’s contagious. However, when Avery’s not in a good mood, that’s magnified as well. She knows what she wants and what she doesn’t. She’s vocal about her dislikes and her discontentedness. As a parent, often the only recourse during the mind-numbing early years is to “out-stubborn” your kids. With Avery, that may not be possible, because Avery can hold her ground like nobody’s business. But that stubbornness and strong will may well be what saved her life. When she was just two months old, Avery became sick with pneumonia. Sleeping in her carrier, we became concerned that her cough sounded strange. We took take her to the hospital but did not think it was anything too serious—until they took her blood oxygen level and the admitting nurse hit the red emergency button and the room quickly filled with medical personnel. That was the start of four weeks of constant struggle for our little 10-pound baby as she fought for life and breath. The pneumonia turned into a drug resistant infection called MRSA. Avery was on respirator and drugs to keep her body still so she would not struggle against the breathing tubes that gently inflated her lungs. We prayed a lot and

watched as God and the caring experts at Methodist Children’s Hospital helped heal her. She came home on Thanksgiving Day, which now has so much more meaning to our family. This is what it’s like to parent Avery: you

learn to slow down and appreciate the victories as they come. They may not arrive at the same age as her friends, but they do come. You learn to listen. Avery loves to talk, sing, have pretend conversations, and interact with the world around her. It makes you appreciate the full commitment she has to joy when you hear the words from the musical “Annie” coming at full volume, even though they may be hard to understand, and the tune may be only three notes,. You learn to be thankful. Watching the interaction between our older kids and Avery is amazing. Our older daughter and son watch over Avery and play with her in ways we could not have imagined before she arrived. Avery sits and sorts paper with her sister and loves to

interact with her high school friends and participate with the band and cheerleaders at the football games. Avery has brought out the caregiver in our son. He is her best friend and playmate at home. For hours every weekend, he wrestles, tickles, plays Hide ‘n’ Seek, and dresses her in his “scary” Halloween costumes. Both of our older kids have developed a sense of compassion and empathy that would not have been possible without Avery. Avery squeezes every minute from every day. She welcomes guests with fullface kisses. She greets strangers as though they’re life-long friends. She has several very large men totally wrapped around her little fingers. She serves tea from her play kitchen (you better pretend to like it). And you had better answer the pretend phone when she calls. She runs the bases at her baseball games with arms outstretched and as if the whole world is watching and cheering. She loves riding on her daddy’s shoulders, clapping your face in her hands, nose to nose, while she looks deep into your eyes, and your soul. She can cause inexplicable joy and indescribable frustration. She has uncontainable curiosity, deep, abiding, forever love. Just like every other child who’s loved by any other parent in the world. That’s life with Avery. Just with a little more vibrant color. And with the volume turned up to 12!• ABOUT THE AUTHORS: Ginger and James Lambert live with their three kids, Rachel, John and Avery, in San Antonio, TX. Stacy Kocur is a longtime family friend.

REECE’S RAINBOW If anyone is interested in the idea of adopting a child with Down syndrome, I highly recommend checking with your local foster-adopt program and/or ReecesRainbow.org. We know three local families who have adopted young children, both with and without Down syndrome, through Reece’s Rainbow. Avery was lucky to have a birth family that cares very much about her, but there are countries around the world where children with DS are considered sub-human and die of neglect in orphanages and mental institutions. Reece’s Rainbow brings together those who have the physical resources to adopt, with those who have the financial resources to help – if you have either, please try and check them out. www.eparent.com/EP MAGAZINE • October 2013 43


WHAT’S HAPPENING The Down syndrome Association of Atlanta (DSAA) Honors Frank J. Murphy with the Lifetime Achievement Award Frank J. Murphy was honored in

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September with the Lifetime Achievement Award by the Down syndrome Association of Atlanta (DSAA). The DSAA also recognized volunteers, supporters, and community heroes during the 2nd Annual Buddy Breakfast at the beautiful City Club of Buckhead. Exceptional Parent (EP) magazine was represented by Dr. Rick Rader, this publication’s Editor in Chief, at the event. The DSAA Lifetime Achievement Award recognizes individuals for long-standing service of at least 15 years and exceptional dedication to the Down syndrome community, and to the special needs community as a whole. Founded in 1979, The Down Syndrome Association of Atlanta (DSAA) is a 501 (c)(3), Georgia-based nonprofit organization dedicated to providing individuals with Down syndrome and their families life-long community connections. Murphy was born in Louisville, KY on August 28, 1937. In 1959, he married Yvonne Fitzpatrick, who passed away in 2002. Together, WELL-EARNED HONOR Frank and Karen Murphy at the Second they had seven daughters— Laura Anne, Janice Lee, Mary Patricia, Annual Buddy Breakfast in September. Joan Marie, Sandra Lynn, Julia Catherine and Karen Suzanne—and 23 grandchildren. Their youngest, Karen, who has Down syn- education of people with disabilities. All through his stint as drome, was born in 1976. She graduated from North Springs High Executive Director, he assisted various Senators’ and Congressmen’s School with honors. Frank Murphy graduated for the University of staffs, educating them on the best practices for education and Louisville as a Mechanical Engineer in June 1959. Through the health for individuals with Down syndrome and other disabilities. years, he had been affiliated with Western Union Company Murphy said, “Many of my trips took me to the National OWN S D in Chicago, the Bristol Company, the Hayes Corporation, Institutes of Health, mainly the Eunice Kennedy Shiver Y IS R and then Milton-Roy Corporation. In 1969, he left the National Institute of Child Health and Human corporate world to start his own business. Development (NICHHD). I made regular trips to As for the National Down Syndrome Congress Washington to meet with various staff members to (NDSC), Murphy started out by being elected to the keep them focused on issues affecting people with disRE Board of Directors in 1978. He was on the Board from abilities. We were not focused on ‘handouts;’ we just N EN S MO ES 1978 to 1980, served as Treasurer from 1980 to 1983; then wanted to make sure our people received their legal and Second Vice President from 1983 to 1984; and First Vice lawful position in the general population.” President from 1984 to 1985. He then served as President from Debbie Currere, a longtime friend and colleague of Murphy, said, 1985 to 1988; and as Past President from 1988 to 1990. “In his 17 years of traveling to Washington, DC, his focus always Murphy was asked to take over the office of Executive Director in remained speaking for people with Down Syndrome! He was openly 1991, where he served until 2002. During that time, he moved the welcomed by many Senators and Congressmen as he brought them National office from Chicago to Atlanta, GA. information on disability issues that they could trust. He also was on the advisory committee of the NICHD by invitation of Dr. Felix de la Cruz and Dr. Duane Alexander... Frank has committed his life “FRANK HAS COMMITTED HIS LIFE SINCE KAREN WAS BORN IN since Karen was born in 1976, to advocating for individuals with 1976, TO ADVOCATING FOR INDIVIDUALS WITH DISABILITIES disabilities with his passion for individuals with Down Syndrome.” WITH HIS PASSION FOR INDIVIDUALS WITH DOWN SYNDROME.” Following his stint with the NDSC, Murphy took over the reins of the EP Foundation for Education, Inc. (EPFE) as President and CEO During his tenure as Executive Director, Murphy was active in the (EPFE)— and continues in that capacity to this day. The EPFE’s goals enactment of the national legislation commonly referred to as the and objectives are to put in place programs leading to the education “Education of the Handicapped Act (94-142) (IDEA)”. It was during of parents and professionals in the newest and best practices and this time and thereafter that he participated in a consortium of sev- the delivery of services to its constituency. The EPFE has co-sponeral disability groups regularly meeting in Washington, D.C., to help sored several general conferences centering on various aspects of make changes and suggestions to the various acts dealing with the the lives of people with disabilities.•


WHAT’S HAPPENING The National Down syndrome Society Invites Americans Nationwide to Celebrate People with Down syndrome this October October is National Down syndome Awareness Month in the United States. The National Down Syndrome Society (NDSS) was instrumental in establishing this official month over 30 years ago, in concert with its mission to be the national advocate for the value, acceptance and inclusion of people with Down syndrome. Since 1995, NDSS has highlighted the annual celebration through the National Buddy Walk® Program, which seeks to promote the NDSS mission on a local level with over 250 Walks expected in 2013. Last year, over 295,000 people participated in Buddy Walks throughout the country which, together, raised over $11.75 million for local and national initiatives. NDSS prides itself on its vast and up-todate information, and invites everyone to take advantage of its print and digital resources. • NDSS offers a Down syndrome fact page and preferred language guide to learn

about Down syndrome and how to speak properly about people who have it. • NDSS recently republished its new and expectant parent guide and brochure, which offers information about Down syndrome as well as the organization. • The latest NDSS publication is “Aging and Down Syndrome: A Health and Well-being Guidebook,” which is now available in both English and Spanish versions. “Down syndrome awareness is very important to us,” said NDSS Goodwill Ambassador Chris Burke, who played Corky on “Life Goes On,” the first major character in a network television series with Down syndrome. “People with disabilities need a lot of love, support and encouragement to achieve our fullest potential.” NDSS offers a range of ideas and ways to get involved throughout Down Syndrome Awareness Month at www.ndss.org/ DSAM2013

The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome. The National Down Syndrome Society envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations and become valued members of welcoming communities.

PHOTO COURTESY WWW.NDSS.ORG

The Buddy Walk® was established in 1995 by the National Down Syndrome Society to celebrate Down Syndrome Awareness Month in October and to promote acceptance and inclusion of people with Down syndrome.

Since 1995, the National Buddy Walk® program has grown from 17 Walks to over 250 Buddy Walk® events taking place in cities across the country and in select international locations in 2013. The National Down Syndrome Society is a nonprofit organization representing the approximately 400,000 Americans who have this chromosomal condition. NDSS is committed to being the national advocate for the value, acceptance and inclusion of people with Down syndrome. To learn more about NDSS, visit www.ndss.org. www.eparent.com/EP MAGAZINE • October 2013 45


A HANDFUL OF PLAYTHINGS: SOME CLASSIC, SOME NEW

TOYS FOR THE HOLIDAYS 2013

The end-of-the-year Holidays are coming! So many toys are out there, at department stores, online, why, even when using your smart phone. Well, that’s tens of thousands to choose from! While electronic devices (iPads/iPods, Leapfrog devices, Kindles) may be some of the more popular gifting ideas these days, we have chosen to get back to the basics. This year, Exceptional Parent (EP) Magazine is keeping things simple. We searched through two outstanding websites – Fat Brain Toys and Enabling Fat Brain Toys® http://www.fatbraintoys.com has perhaps the best organized and searchable section of Toys for Kids with Special Needs. It has a total of 3,142 products in this category! The toys are organized by type of disability –and the site even includes useful comments and input from experts and actual users of the toys (caregivers such as parents, educators, counselors and more). Fat Brain Toys is a retailer and developer of unique kids' toys, games and gifts. The toy company works on stocking nearly 7,000 of the best toys for kids, most shipped the same day, including: Erector Sets, Melissa & Doug, Science Projects, Games, Puzzles, and several others.

1 Kinetic Sand Recommended for the following special needs: ADHD; other Learning Disabilities; Sensory Integration Disorder Ages: 3 and up Retail Price: $45.00 http://bit.ly/1bh1AWO

1 2 Curious George Jack-in-the-Box (Adapted) Recommended for most children with physical disabilities Ages: 18 months+ Retail Price: $104.95

Devices – and are now sharing a few of their recommendations with you. This year we are highlighting a handful of toys; some of them newer, and the rest, classic toys that have been adapted for kids with special needs. Of course this is just a snapshot of what is out there. To give you more access to more choices, we made sure to include information on those two great sites— to enable you to point, search and click. Enjoy shopping for your little ones!

Enabling Devices http://enablingdevices.com/catalog is an organization that Exceptional Parent (EP) magazine has known and recommended for many years. They offer a large selection of toys for the special needs community, many of them specifically adapted for its children. Enabling Devices is dedicated to developing learning and assistive devices to help people of all ages with disabling conditions. Founded by Steven E. Kanor, Ph.D. and originally known as Toys for Special Children, the company has been creating innovative communicators, toys and switches for the physically challenged for more than 35 years. Through their expertise in designing electro-mechanical assistive and adaptive devices for people of all ages, Enabling Devices believes that their products enable people with physical challenges to communicate, learn, work, play, and function more easily, effectively, and enjoyably in the world. Remarkably, Kinetic Sand moves by itself as you work with it. It continually rearranges itself. Squeeze it, shape it, build something small. Build something big. Visibly it quick-melts, and the movement is fascinating. It looks like real sand, because it is 98% pure sand. It moves like dense fluid without making a mess.

That's the 2% of non-toxic polymer. It sticks to itself, so cleanup is a breeze. Kinetic Sand soothes and engages both kids and adults, in schools, at work, in therapy sessions, and at home. This large volume (11 lbs.) is just right for dispersing among many children, but even a small amount of Kinetic Sand is fascinating.

Pop goes the weasel! Curious George lights up your day. Just activate your capability switch and George pops out and a fun tune plays. A terrific cause and effect experience. Size: 8"L x 5½"W x 5½"H. Requires Capability Switch and 4 AA Batteries. Weight: 1½ lbs.

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3 Tangle Therapy Recommended for the following special needs: Cerebral Palsy; Traumatic Brain Injury Ages: 3 and up Retail Price: $10.00 http://bit.ly/X2jDUi Relax and twist by using the powers of the mind. Use Tangle Therapy for hand and mind wellness. This Tangle is covered with soft,

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flexible texturized plastic. It is comprised of a system of rotating interconnecting links that can be twisted, turned, bent, coiled and shaped into an endless amount of shapes. Tangle Therapy relieves minor stress, improves range of hand motion, restores motion of joints, strengthens finger muscles, and rehabilitates hand muscles and joints. Complete instructions are included. Tangle Therapy fits in your hand for single handed manipulation.

5 Alphabet Sound Puzzle Recommended for the following special needs: Visual Impairments Ages: 3 and up Retail Price: $19.99

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6 Etch A Sketch (Adapted ) Recommended for most children with physical disabilities Ages: 3 and up Retail Price: $239.00

5 http://bit.ly/1eM52sP

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4 Boogie Board LCD Writing Tablets Recommended for the following special needs Autism Spectrum Disorders; ADHD Ages: 2 and up Retail price: $37.00 http://bit.ly/SXcJ3m Boogie Board Paperless LCD Writing Tablets are an environmentally-friendly paper replacement. Erase your image with the touch of a button – and a friendly flash from the liquid crystal displays – cool! One user says, “My son dislikes handwriting. The boogie board makes handwriting fun! He doesn't even realize he's learning!” This is the original Boogie Board tablet that started a revolution. LCD screen is 8.5 inches, ultra light (4 oz.) and thin (1/8 inch). Please Note: Boogie Boards are pressure sensitive. Writing with more pressure creates darker lines.

Highly durable and colorful, this classic ABC puzzle by Melissa & Doug teaches chil- 6 dren the alphabet! Corresponding pictures that begin with each letter are beneath each puzzle piece to encourage vocabulary development. Alphabet puzzles reinforce letter identification, letter sounds, small motor skills, and cause & effect relationships! As children place each letter in its correct space, the letter says its name. Hear the names of 26 letters and objects that begin with them with this unique alphabet puzzle! Requires 2 AAA batteries, not included. Ideal for early learning experiences! 7

7 Hungry Hippo (Adapted) Recommended for most children with physical disabilities Ages: 4 and up • Retail Price: $134.95 http://bit.ly/188esK4 It’s fun and frantic! This adapted game from Enabling Devices is fun and frantic! The adapted game has two paddles attached to the

A classic now adapted! Activate your way to great looking pictures with the classic Etch A Sketch. The four built-in switches allow you to go in horizontal or vertical directions. Great for working on directionality. Just watch the magic screen as your lines begin to form exciting drawings. Helps to increase visual attention and encourages bilateral hand usage. When you are finished, just take it off the base and shake and then you are ready to start again. The base also has 4 external jacks for your capability switches should you require them. Size: 8"H x 13"W x 11½"D. Requires 6 C Batteries. Weight: 3¾ lbs.

Hippos for easy activation. Just simply bang away and watch as the Hippos race to gobble up as many marbles as possible. Increases eyehand coordination and hand strengthening. A great game to play with friends or family. Size: 25"L x 16½"W x 6½"H. Weight: 3¼ lbs. WARNING: CHOCKING HAZARD – Small parts. Not for children under 3 yrs.

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Surfer’s Healing BY KIMBERLEE RUTAN MCCAFFERTY e slide serenely into a coveted space, and I silently thank the parking gods of Belmar for providing this one blessed opening in what looks to be a packed house of streets. Zach and I are running a few minutes late for the Autism Family Services of New Jersey’s Annual Autism Beach Bash, and since I am painfully punctual and don’t want him to miss his surfing slot, I rush us out of the car. We make record time to registration, carefully navigating amongst people and ropes stretched taut to order them, and we’re in. I find a perfect slice of sand to deposit our chairs and towels, find out that my rushing was unnecessary as the Surfers Healing people are running about 40 minutes behind schedule, so Zach and I will have time to explore. I tell him we can head toward the game tent and he gives a big “whoohoo!,” then speeds ahead with his middle-aged mommy trying to keep up. Yes, I said trying. Zach and I have attended the Beach Bash two years in a row now, and it’s such a special day and unique event that I am determined to carve out time for it annually. It’s held the first Sunday after Labor Day at Belmar’s seventh avenue beach, and includes a surf camp called Surfers Healing, a California-based nonprofit

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which specializes in working with children respectively. Keith shared with me that the with special needs. You must register for Beach Bash was a “great experience” for all both separately, and spots fill up very of them, and although attending the event quickly for the surf camp (however, last required some coaxing with one of their year we were able to get in on a waiting list daughters, it was worth the effort. He told the day of without a problem). me that it was “wonderful to be able to do The Bash includes an activity tent with something together as a whole family,” and games, an arts and crafts area, a dunking they planned on attending every year. game (Zach’s favorite as he reigned victoriAs a mom who struggles to discover ous), slide and bouncy house, music and activities which take into account both of dancing, and an exhibitor my sons’ needs, I could THIS IS ONE EVENT completely relate to that tent featuring local and WHERE EVERY statewide services for sentiment. AUTISTIC PERSON individuals with autism Zach soon conquered AND, EQUALLY and their families. Last all of the games availIMPORTANT, THEIR year over 5,000 people able to him, and we FAMILIES CAN PASS attended, which is not migrated over to the AN ENTIRE DAY surprising as one in 49 arts and crafts table. I SIMPLY HAVING individuals in the Garden struck up a conversaFUN WITHOUT State are on the autism tion with a teenaged BEING JUDGED spectrum. This is one boy, Ryan, 13, and his event where every autistic person and, mother, Lori Dunlap, who told me they equally important, their families can pass loved coming to the Beach Bash to volunan entire day simply having fun without teer, and had been attending for the last being judged. four consecutive years. Lori’s daughter Trust me, it’s a priceless gift. Ashley, 11, told me she loved helping peoI had the opportunity to interview a few ple with autism and that the day was “awefamilies during the event while keeping an some.” Her mom shared with me that her eye on Zach (no easy feat). I spoke to Keith husband Mike had wanted his children to Fleming, who along with his wife Lora is be involved in something philanthropic, raising two young girls on the spectrum, and had chosen this event for them to parMegan and Emily, eight and seven years old ticipate in annually. I asked what their con-


take in my surroundings, to really see what’s transpiring around me without worrying about one of my kids running away. I see faces alight with joy. I hear crying and tantrums of major proportions. I witness adults and children making invaluable connections, see individuals with autism stretching their limits to attempt new things, and watch as the adults around them reach to accommodate them. It’s a day where autism dominates, where the neurotypical world is for once diminished, placed into the minority. It’s messy. It’s beautiful. It’s autism. I whip out of my reverie as I realize that big wave has indeed materialized, and our volunteer and his charge attack it in stages. First, my brave boy holds tight for dear life. Then I watch as he struggles to a crouching position, hands still clenching fiberglass in a death grip. Finally, I see him soar to a standing position which I miraculously capture for posterity, see my boy triumph as he waves to his dot of a mother so far away from him, but always so near as well. He tumbles at the end, and politely but firmly declines another attempt, but all is well. Within moments he is graced with a trophy and has hugged his helper goodbye, then rushes to my arms for a hug and a tug back to our chairs for lunch. My boy has his priorities straight.•

nection was to autism, and Ryan just smiled at me and said they didn’t have any, they just “liked to help.” t is so rare in this state to find anyone without a connection to autism. It is even more rare to discover individuals without a connection willing to give their time and services to a great cause. I managed to stammer out a “thank you so much,” then darted off in pursuit of my son who had remembered the dunking booth. Moments of connection are fleeting when you’re caring for an energetic sixyear-old. Soon Zach’s number was called, and we trotted over to the surf station, my son

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uncharacteristically holding my hand, slightly nervous about the activity to come, although loathe to admit it. Soon we are registered and he is led away to don a life jacket, but before he goes he gives me a small wave as I stake out my spot on the water’s edge. After a few minutes, one of the Surfers Healing volunteers rides in, and he and several other volunteers swing my son into pounding waves, then deposit him firmly on the sun-kissed surfboard. I watch as his helper glides effortlessly away from me, then I settle in to wait for them to catch the “big one.” I wait. Then I wait some more. But the waiting gives me a chance to breathe (which I don’t often get to do), to

To register for the surf camp visit www.surfershealing.org To register for the 2014 Beach Bash visit www.autismbeachbash.org, or call Autism Family Services of New Jersey at 1-877-237-4477. For information about Autism Family Services of New Jersey please call toll free 1-877-237-4477, or visit www.autismfamilyservicesnj.org

ABOUT THE AUTHOR: Kimberlee Rutan McCafferty is a former educator and presently a stay-at-home mom. She has written several articles for Exceptional Parent magazine on parenting a child with autism.

www.eparent.com/EP MAGAZINE • October 2013 49


How Donating Samples to the NIGMS Repository Supports Genetic Research

BANKING FOR THE

FUTURE BY TARA SCHMIDLEN, MS, CGC

atients and families affected by rare diseases are often eager to participate in research or contribute to science in some way, but may have limited options due to the rarity of these conditions. One way that patients and families can contribute to scientific research is by donating a blood/and or tissue sample to the NIGMS Human Genetic Cell Repository at the Coriell Institute for Medical Research in Camden, N.J. The NIGMS Repository seeks samples from people with inherited genetic diseases or chromosomal abnormalities for use in research. The NIGMS Repository is supported by the National Institute of General Medical Sciences, a branch of the National Institutes of Health (NIH). The Coriell Institute is an independent non-profit research organization dedicated to understanding human genetic diseases and providing the highest quality genetic resources. Donating a blood or tissue sample to a cell repository, like the NIGMS Repository at Coriell, directly supports and makes research into genetic diseases and chromosomal abnormalities possible.

P

So, what exactly is a cell repository and how are cell repositories important to the success of research? A cell repository, or biobank, is a bank that stores cell lines made from human blood or tissue for use in research. A cell line is a population of cells that can continuously grow and divide. To make a cell line, living human cells are taken from a blood or tissue sample and placed in a container with a growth solution. This process is called cell culturing. The cells are allowed to grow and divide for a period of time. Eventually, groups of cultured cells are “harvested” and placed into small glass ampoules. The glass ampoules full of cells are then frozen in liquid nitrogen tanks at -316° F where 50 October 2013 • EP MAGAZINE/www.eparent.com

they are stored until requested by a scientist. Cell repositories like the NIGMS Repository at Coriell have become a key money and time saving resource for scientists. It takes a lot of resources for scientists to find a group of people with a specific genetic disease or chromosomal abnormality and collect samples and medical information from each person each time a new research study is to be perCoriell Institute for Medical Research, formed. The availabilfounded in 1953 and based in Camden, ity of a centralized New Jersey, is an independent nonsource of existing, profit research center dedicated to the high quality cell lines study of the human genome. Expert becomes ever more staff and pioneering programs in the fields of personalized medicine, cell critical for those scibiology, cytogenetics, genotyping, and entists studying rare biobanking drive our mission. conditions which often have limited funds for research. Rather than expend precious time and resources collecting samples, qualified scientists from all over the world can access the cells and corresponding medical information banked at Coriell and use them for a variety of research purposes, including: discovery of new genes, studying how cells from individuals with genetic diseases or chromosomal abnormalities function, developing new ways to detect genetic diseases or chromosomal abnormalities, and the development and testing of potential treatments or cures. When an individual donates a sample to the NIGMS Repository, they are providing scientists all over the world


FREEZING THE FUTURE Cultured cells are harvested and are placed in glass ampoules (left) and then stored in liquid nitrogen tanks at -316 ° F (right). with the very valuable opportunity to learn more about their specific disease and how their specific genetic make-up influences the symptoms and behaviors associated with their diagnosis. The NIGMS Repository has been funded by the NIH since 1972 and is the world’s largest public human genetic cell repository. The NIGMS Repository contains over 10,600 samples, representing over 500 different genetic diseases and chromosomal abnormalities. There are many different types of cell repositories. Some focus only on a single disease of interest while others may focus on a group of diseases like cancers or muscular dystrophies. Some repositories are small, privately funded collections and their samples are only made available to a specific group of researchers. While both public and privately held repositories are valuable for research, one advantage of donat-

ing a sample to a public repository is that the samples are able to be accessed and utilized by multiple scientists from all over the world simultaneously, which can accelerate research progress and foster collaboration among groups of scientists. Samples donated to the NIGMS Repository at Coriell have been used in over 5,500 scientific publications by scientists from over 50 different countries. In addition to collecting blood and tissue samples, the NIGMS Repository also collects information about the medical and family history of the sample donor. While genetic test results are not required for a sample to be added to the repository, the more information that accompanies a sample, the more useful that sample is to researchers. We take the privacy and confidentiality of each donor very seriously. To protect the privacy of donors, samples are coded with a number and all names,

”The availability of a centralized source of existing, high quality cell lines becomes ever more critical for those scientists studying rare conditions.”

dates of birth or other potentially identifying information are removed from both the sample and any accompanying medical records. Only limited demographic information is provided to researchers who access the cell lines and includes the age of the donor at the time of sample collection, gender, diagnosis, race/ ethnicity and country of origin. ne exciting approach to learning more about genetic diseases and chromosomal abnormalities that capitalizes on cell lines banked in the NIGMS Repository is the development and use of man-made stem cells, called induced pluripotent stem (iPS) cells. iPS cells are man-made embryonic-like stem cells that are made by taking mature human cells (e.g. skin cells) and reprogramming the cells back to an embryonic, undifferentiated or “blank-slate” state. These “blank-slate” iPS cells can be directed to develop into any cell type so that scientists can test how well a drug or therapy may work on those cells. Using iPS cells allows scientists more opportunity and easier access to study difficult to obtain target tissues like muscle or nerve tissue. Scientists can make unlimited

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www.eparent.com/EP MAGAZINE • October 2013 51


Sample donation requires the completion of an informed consent form, a submission form, and a clinical information summary form. Copies of genetic test results and physician summary letters are also requested, as the more clinical information that accompanies a sample, the more useful the sample is to researchers. Coriell covers the cost of shipment both ways and is able to reimburse sample donors up to $40 USD for the cost of a blood draw. It is recommended that blood samples be collected during a scheduled doctor’s visit and that tissue samples be collected during another planned surgical

SEARCH SUCCESS Scientists from all over the world can use the NIGMS Repository’s online catalog to find samples from individuals with genetic diseases and chromosomal abnormalities. quantities of "affected” iPS cells to study from a single skin biopsy. Having the ability to make unlimited quantities of iPS cells may be helpful for transplant-based therapies or to test the effects of several new candidate drugs for the treatment of a disease. In addition, iPS cells may offer scientists a better disease model since animal models do not always overlap human physiology. Using iPS cells, a scientist can test the effect of a candidate drug directly on the target tissue/cell type (like human muscle or nerve cells) which could make recruiting enough physicians and research subjects to conduct clinical trials easier if the drug or therapy has been developed using the best possible model (by using iPS cells versus an imperfect animal model). iPS

cell technology may also help advance the development of promising new drugs or therapies. The better the quality of drug and therapy development testing, the more likely the drug or therapy is to win the approval of the FDA, support from insurance companies, and the interest of potential manufacturers and distributors. Each sample that is donated to the NIGMS Repository is an important contribution to the acceleration, improvement and advancement of scientific research on genetic diseases and chromosomal abnormalities. The NIGMS Repository accepts sample donations from patients and families from all over the world and collects samples from affected individuals and both biological parents, whenever possible.

TAKE PART Interested sample donors may contact Tara Schmidlen, MS, CGC, Genetic Counselor for the NIGMS Repository, at 1-856-757-4822 or tschmidl@coriell.org to see if they are eligible to participate and to learn more about this opportunity. 52 October 2013 • EP MAGAZINE/www.eparent.com

”The NIGMS Repository accepts sample donations from patients and families from all over the world and collects samples from affected individuals and both biological parents, whenever possible.” procedure in order to avoid incurring any sample collection fees. Coriell is not able to reimburse sample donors for any costs associated with having a tissue biopsy. Interested donors are not required to provide both a blood and a tissue sample, although both sample types are welcomed from donors when collection of both sample types is possible. The NIGMS Repository is not able to tell individual sample donors how their sample was used or who obtained materials made from their sample. Sample donors will not receive results of any testing performed on their sample or materials made from their sample.• ABOUT THE AUTHOR: Tara Schmidlen, MS CGC is a NIGMS Human Genetic Cell Repository Genetic Counselor at the Coriell Institute for Medical Research, Camden, NJ.


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EP (Exceptional Parent) Magazine continues its series of articles on Alternative Medicine that covers the following areas: bioelectromagnetic therapy, chiropractic, hyperbaric oxygen therapy, acupuncture, and several others. EP (Exceptional Parent) Magazine has a responsibility to report on both conventional and alternative therapies for a variety of developmental disabilities. The inclusion of any particular treatment is not an endorsement of the efficacy of the modality but merely presented for educational and informational purposes. We have always been proponents of the following axioms: discuss with your managing physician and healthcare team any therapies you are considering before undertaking them; acquire and study the evidence that supports any treatment, make informed decisions and carefully evaluate the benefits of the treatment using accepted metrics that can be tracked, weighed and compared.

“WE KNOW HOW HYPERBARIC THERAPY WORKS – IT WORKS BY REVIVING THE LITTLE MITOCHONDRIA & ACTUALLY CAUSES MITOCHONDRIAL BIOGENESIS, SO THAT IF YOU NEED MORE MITOCHONDRIAIN YOUR NEURONS MORE OF THEM WILL FORM.”

HYPERBARIC THERAPY WHAT YOU NEED TO KNOW BY K. PAUL STOLLER, MD, FACHM

OVERVIEW Hyperbaric therapy is truly a benign and benevolent intervention for children and adults with brain injuries. It works as its name implies - hyper (more of) and baric (pressure) and in fact that is how it works. It is the increased pressure of the gas we breathe everyday that can actually signal the DNA in our cells to perform healing tasks that the body normally can’t do. Ground zero for this activity is the mitochondria, which are the little organelles inside of our cells that convert oxygen and sugar into the gasoline the cells run on (ATP) – this is called cellular respiration. It doesn’t take much to knock mitochondria off-line and then that cell can’t perform the job it was assigned. So, be it oxygen deprivation, external toxic exposure, stroke, trauma, or a hyper-immune reaction to an infection or a vaccine the mitochondria will be damaged. We know how Hyperbaric therapy works – it works by reviving the little mitochondria and actually causes mitochondrial biogenesis, so that if you need more mitochondria in your neurons more of them will form. It is interesting to note that the reason the ketogenic diet helps patients with certain types of neurological problems is that ketone bodies help support mitochondrial function. It is a back door way the mitochondria can receive energy if glucose transport has been compromised. My opinion is that hyperbaric therapy is the most effective way to do this. It is that simple – this is not rocket science, but it is non-invasive brain repair. When I published an article on using hyperbaric oxygen thera54 October 2013 • EP MAGAZINE/www.eparent.com

py to treat Fetal Alcohol Syndrome (FAS) in the prestigious Pediatrics journal, I thought I would be hearing from a lot of people. After all, FAS is they most common form of non-hereditary mental retardation in the USA. However, when the article was published back in 2005, it was met with resounding silence. This is emblematic of the trouble hyperbaric therapy (HBT) or hyperbaric oxygen therapy (HBOT) had, becoming integrated as standard of care for treating brain injuries. It isn’t as if it doesn’t treat brain injuries already – approved and accepted (insurance reimbursable conditions). Decompression Sickness that affects the brain is not about shrinking down the bubbles of nitrogen that DCS can cause – those bubbles are ephemeral and are gone within five minutes, unless one ends up on an autopsy table. SO, then, what is being treated? HBOT is treating the inflammatory cascade and hypoxic brain injury those bubbles set off. In other words, a brain injury is being treated. When Carbon Monoxide Poisoning is treated with HBOT is this therapy pulling the CO molecule off the hemoglobin in your red blood cells? That is the answer most medical students would tell you, but the truth is that by the time most patients get into a hyperbaric chamber, they have normal Carboxy-Hemoglobin levels. So, what is being treated? What is being treated are those little mitochondria, and on a DNA level causing mitochondrial biogenesis (new mitochondria) – all this by perhaps the safest procedure in medicine at the pressures used to treat brain injuries.


WHAT ARE HYPERBARIC CHAMBERS? HOW DOES ONE GET There are many types of hyperbaric TREATED? chambers in all shapes and sizes, but they are not all equal. The term “hard-shell” chamber refers to chambers made of steel and acrylic that can achieve pressures equal to three atmospheres and beyond. There chambers are small, one-person monoplace devices, all the way up to submarine sized, 30-person multiplace chambers. The hard-shell chambers can be compressed with 100% oxygen or room air, but if they are compressed with room air, as all multiplace chambers are, there are oxygen hoods or masks given to the patient(s) so they can breathe in the enriched oxygen. The “soft-shell” or portable chambers come in all sizes as well, but the largest of the group are approximately seven feet long and 33 inches in diameter. They only inflate to 1.3 atmospheres (under current FDA regulations), which is about 12 feet of seawater pressure (the pressure you would feel if you were swimming 12 feet below the surface of the water). Soft-shell chambers can have oxygen pumped into the chamber by an FDA licensed oxygen concentrator, but even 1.3 atmospheres of compressed room air will increase the partial pressure of oxygen by almost 50 percent.

WHICH PRESSURE IS BEST AND IS MORE OXYGEN BETTER? There is a therapeutic window that most brain injuries respond to and that is 1.3 to 2.0 atmospheres. There are always exceptions and special cases, but pressures between 1.3 and 1.5 atmospheres seems to be the sweet spot for the utilization of glucose by the brain and so this is a target pressure for many protocols that treat brain injuries. More pressure and more oxygen are not better. The pressurized air (which contains more oxygen because of the increased pressure) or 100% pressurized oxygen act as signaling agents to as many as 8000 genes. The mitochondria have their own DNA and this is where the action takes place to bring back the energy levels of injured or poisoned brain cells. More genes are actually signaled at 1.5 atmospheres than at higher pressures.

Hyperbaric treatment facilities that are not connected to hospital operations almost always treat conditions that have yet to be approved by the FDA – socalled “off-label” conditions. These free-standing centers are few and often far between, and since the brain injury protocol requires daily treatments for months; both treatment cost and distance to the nearest clinic become critical matters. Optimally, you will want your child to be treated at a clinic that has experience treating children with brain injuries and where there is a physician with experience in treating brain injured children. That is the best case scenario, but that situation is not widely available. The FINDING THE PERFECT FIT Hyperbaric chambers come in second best option is to start many different shapes and sizes. off at such a center and then rent a lished company that stands behind their product is best and what is not best is lookportable chamber, or buy one. Portable chambers go to 1.3 atmospheres ing for the best price. There is only one and are not allowed to be inflated with oxy- company I know of that will both rent gen; although they can have oxygen chambers and buy back their chambers to pumped in at 10 liters per minute by an refurbish them and sell them at a reduced FDA licensed oxygen concentrator. Not price – there is only one chamber manuevery child will be a responder at the low facture in the USA that sells a portable pressure, but most will respond. For the chamber that is Pressure Vessel Certified vast majority of affected children, the best that is the only company I would obtain a case and even the second best case options chamber from. are not practical, which makes having a portable/soft chamber at home the only BUT ISN’T HYPERBARIC THERAPY CONTROVERSIAL? real treatment option. Indeed it is but the controversy is politiWHICH IS THE RIGHT CHAMBER? cal not scientific. When Canadian (Quebec) As I have already pointed out, there are parents petitioned their reluctant governmany shapes and sizes, but not all portable ment to fund a study examining the use of chambers are equal. There are some very hyperbaric oxygen to treat children with cheaply made chambers on the market and cerebral palsy, the government put in place so a parent is best served by a manufactur- a man who designed the study to confuse. er that has the best guarantee, the best sys- He removed the control group and only tem for fixing a chamber, should some- looked at two treatment arms: 1) children thing go wrong, and has a long track record receiving hyperbaric oxygen at 1.75 atmosin the USA of selling their chambers from pheres; 2) children receiving hyperbaric air the same location. In other words, an estab- at 1.3 atmospheres. www.eparent.com/EP MAGAZINE • October 2013 55


The results of the study showed that Gross Motor Function improved 15 times greater with treatment than with previous therapies – both groups of children. Eighty percent of the children involved in this Canadian study (Lancet 2002), and there were 110 children, improved including improvement in cognition, speech and other outcome measures. So, what did the evil representative of the Canadian government do who was sent it to obfuscate the results of the study? He called the 1.3 atmosphere group a placebo group (he did this in French only – in English he called it a sham treatment) and then he announced hyperbaric therapy didn’t work because the treatment group’s results were no different than the placebo group. Since few physicians and scientists know anything about hyperbaric medicine, there was no one around to point out that 1.3 atmospheres is hardly a placebo when it increases the partial pressure of oxygen by almost 50 percent. But they knew that – this was all about making sure the government didn’t have to pay for this therapy for handicapped children and it has worked to this day. Children with CP cannot receive hyperbaric therapy from most third-party payers, in part because of the propaganda surrounding this 10-year-old study. The truth is that 10 times more progress was made during the two months of hyperbaric therapy (while all other therapies were ceased) than during the three months of follow-up with OT/PT restarted. Below are functional brain images of what hyperbaric oxygen can do for a child on the spectrum before and after treatment.

This is a functional brain scan called a SPECT scan. You are looking at the front of the brain. Before hyperbaric oxygen was October2013 2013••EP EPMAGAZINE/www.eparent.com MAGAZINE/www.eparent.com 56 August

administered, there is little to no activity in the temporal lobes and lack of blood flow to the prefrontal cortex. After treatment, the horns of the temporal lobes can be seen now and the deficits in the prefrontal cortex are filling in. (The scans were done by Paul Harch, MD, Director of the LSU Hyperbaric Medicine Fellowship and were submitted into the Congressional record.)

SPECT SCANS REVEAL THE TRUTH A form of functional brain imaging called SPECT (Single Photon Emission Computed Tomography) is used extensively at the Amen Clinics throughout the USA. While it seems obvious, medicine has been treating the brain for over a hundred years without actually looking at SUPER SIZED The largest of the soft shell chambers are it. It looks at blood flow approximately seven feet long and 33 inches in diameter. directly and indirectly at metabolic activi- for brain injuries has been problematic ty. These scans give an objective measure because of so many interests gunning for of how HBOT can reinvigorate neuronal it, but it will become standard of care for metabolic activity and show the recou- treating CP, FAS and other brain injuries pling of blood flow to those now more children have... hopefully sooner than metabolically active neurons. later. In working with blast induced brain injured vets from Afghanistan and Iraq, A FINAL NOTE Hyperbaric therapy requires a physiSPECT has proven itself as a clinically useful tool for documenting the increased cian’s prescription to utilize a hard shell neurocognitive function of the injured chamber or to buy a portable. The child brain. So, if HBOT is so useful why isn’t the must be able to equalize the pressure in Department of Defense and the VA the middle ear by swallowing, even at the embracing this benign therapy? Both mili- low 1.3 pressure level.• tary and VA physicians have been told that should they come up with a drug to treat ABOUT THE AUTHOR: TBI/PTSD, they will be able to keep all the Dr Stoller is chief of Hyperbaric Medicine at the royalties of their invention. The problem is Amen Clinics, Adjunct Assistant Professor, AT Still University SOMA, President of the International these same people, in the remote chance Hyperbaric Medical Association, a lifetime Fellow of they might come up with the magic solu- the American College of Hyperbaric Medicine. He tion for brain injuries with something they can be reached at docstoller@amenclinics.com can personally profit from, they have also scuttled any therapy that might interfere with their pipe dreams of being the inventors of this magic drug. Bringing HBOT online as standard care


WHEN EQUITABLE DOES NOT MEAN EQUAL: NEGC

WESTERN STATES

RESPECTING DIVERSITY & CHOICE NYMAC

REGION 4

HEARTLAND

MSGRCC

SERC

VOR presents its Key Principles in Support of Ensuring the Rights and Opportunities for All People with Disabilities. The organization calls on the broader community of advocates to support and promote these principles. he world of disability advocacy boasts its own language, for better or worse. In some instances for the better, hurtful labels to describe a type of disability have been replaced by words that do not yet have a pejorative connotation. In other cases, however, terms of common usage, such as “choice,” “inclusion,” “integration” and “community,” have been incorrectly redefined to mean only certain choices or certain places according to the user’s ideology. In these instances, some individuals with disabilities have suffered due to a lack of individualized care in favor of ideology. Consider the situation facing residents of Apache ASL Trails, an apartment complex serving seniors with hearing impairments. “ASL” is in reference to American Sign Language and Apache ASL Trails boasts architectural features designed to meet the unique needs of its residents, such as flash-

T

ing lights instead of doorbell or phone sounds, and wiring in common areas that pipe announcements directly to residents’ hearing aids. Beyond architectural conveniences, the complex features a sense of community among similarly-disabled residents who are able to communicate and socialize. If this scenario involved college students or non-disabled seniors, there would be no argument from advocates or the federal government about the community and cost efficiencies fostered when similarly-situated individuals live together. Yet, the U.S. Department of Housing and Urban Development (HUD) has filed a discrimination complaint against the developers of Apache ASL Trails, the construction of which was supported in part by federal funds. HUD alleged that the com-

plex is engaging in housing discrimination because most residents are hearing impaired and thus are not “integrated” enough with the general population. According to representatives for Apache ASL Trails, “"HUD did not interview one single deaf tenant at Apache [or] consult with any experts from the deaf community." In other words, HUD found discrimination on behalf of a group of citizens who, quite to the contrary, are happy and “not lonely anymore.” HUD incorrectly cites Olmstead, a landmark Supreme Court decision, to justify its findings, yet Olmstead actually embraces individual choice. Regrettably, this is not an isolated example of a misguided ideology empowered by a misinterpretation of Olmstead. Rather than support “inclusion” and “integration,” these actions imposing limitations that can www.eparent.com/EP www.eparent.com/EP MAGAZINE MAGAZINE • October • July 2013 57


lead to isolation and, at times, risk. Compare the experiences of Brian and Mark. Brian, who is intellectually disabled, experiences dangerous behaviors. When living with his family, he injured every family member and they replaced hundreds of windows. Brian has been expelled from four community homes in two states and now lives comfortably and safely in a Medicaid-funded facility for people with I/DD. Mark, who has multiple disabilities, wanders out of his home, has little sense of danger, and is prone to outbursts. To keep Mark safe, his mother keeps very loud alarms around her home to alert her and others if he wanders from the home. “If Mark goes out of the door, then we and God and everyone else can hear it because it is so loud,” she said. “But it is exhausting. It is intensely stressful and it’s very exhausting.” According to current federal policy (embraced by the U.S. Department of Justice, C e n t e rs f o r

58 October 2013 • EP MAGAZINE/www.eparent.com

Medicare and Medicaid Services, HUD, and the National Council on Disability), Brian is safe, but considered isolated and segregated because he lives on a campus setting with more than three other individuals with disabilities. Mark is isolated and in a potentially unsafe situation, but considered integrated because he lives with his family in the “community.” Underpinning this policy is, again, a misinterpretation of Olmstead.

EMPLOYMENT INCLUSION Advocacy and policies around the employment rights of individuals have marched down a similar path. Competitive employment –adults with disabilities having the right to work full time and receive at least minimum wage in regular workplaces – is the ideal for many individuals with disabilities, but not all. Some individuals with more serious disabilities require reduced hours, more training, and additional assistance. For these individuals, sheltered and supported employment options allow for a meaningful and productive day that may otherwise be out of reach.

Recognizing the need for a continuum of employment options, the New Jersey Legislature recently voted to save its sheltered employment for its citizens with disabilities: “Supporters contend that even the work and the paychecks are just part of a larger program that also focuses on helping individuals reach goals, including increasing attention span, motor and interpersonal skills, and socialization. Many said a competitive workplace, even with support, was not a realistic goal, noting that those who can move into those workplaces do so.” (Burlington County Times, July 29, 2013) In other states, disabled employees who count on sheltered employment options may not be so lucky. Like other areas of disability advocacy, “choice” and “inclusion” have come to mean only competitive employment. Federal funding cuts and advocacy are pushing states to drop their sheltered employment options to provide disabled individuals the “right” to receive competitive employment. However, this could well be an empty “right.” Even in robust economic times, unemployment rates for individuals with disabilities remain very high. Historically, employers have not had the time or funds to train, supervise and support someone with a disability. Sheltered employment offers alternatives for disabled workers, but if such options are discontinued, the few jobs for people with more profound disabilities will disappear along with their sense of self and accomplishment. “For those who are not capable of working in community settings but are still capable of work, and want to work, and enjoy the company of their colleagues and the staff at a sheltered workshop, this can be a meaningful alternative – and one vastly superior to spending their days in less productive (or nonproductive) activities at their residences.” (Testimony of Linda Blumkin, VOR member, before a New York Office for Persons with Developmental Disabilities Town Hall Meeting, September 13, 2013). Full inclusion / competitive employment advocates claim to be protecting rights, yet they may actually be limiting rights by limiting choices. “I think people deserve a choice,” said


Donna Saskowski, Executive Director of Genesee Arc in New York, which is facing closure due to lost funding. “If they choose to be out in the community, that’s their choice. If they choose to be in the work center, I think they should also have that opportunity. If we eliminate the workshop, they no longer have a choice. Why can’t they have both?”

A NEW VISION FOR PEOPLE WITH DISABILITIES: RESPECTING DIVERSITY AND CHOICE In an effort to correct for past sins, the disability community has over-corrected. Just as there was nothing person-centered about placing individuals in overcrowded

institutions decades ago, there is also nothing person-centered about policies which support forcing all individuals to accept services and supports in small, “community-based” settings. Both extremes neglect the need for person-centered supports in an unreasonable, and potentially dangerous, quest for “sameness.” The human condition is not that convenient. Equitable – providing individualized care and employment options – does not mean equal. People with disabilities have vastly different needs, requiring vastly different supports across the continuum. Choices will be different. The provision of care and related costs of

care must necessarily vary and be responsive to varying needs. People with disabilities should not have to endure a different standard of community than other populations and society in general. Rights should be individualized, respectful of diverse conditions, and inclusive of the entire disability population. In this spirit, VOR presents the following “Key Principles in Support of Ensuring the Rights and Opportunities for All People with Disabilities”. We call on the broader community of advocates to support and promote these principles. Embrace diversity. Embrace choice. •

KEY PRINCIPLES IN SUPPORT OF ENSURING THE RIGHTS AND OPPORTUNITIES FOR ALL PEOPLE WITH DISABILITIES GENERAL PRINCIPLES

they live, with any necessary supports.

including what services and financial supports are available.

describes a widely diverse group of people, ranging from people with mild physical and/or intellectual disabilities to those with profound and/or severe intellectual disabilities, along with medical or behavioral disabilities.

■ Support for full community

EMPLOYMENT

■ “Individuals with disabilities”

■ “Individuals with develop-

mental disabilities and their families are the primary decision-makers regarding the services and supports such individuals and their families receive, including regarding choosing where the individuals live from available options, and play decision-making roles in policies and programs that affect the lives of such individuals and their families.” DD Act, 42 U.S.C. 15001(c)(3)(2000).

integration of most individuals with disabilities should not be interpreted to deprive individuals with profound intellectual and developmental disabilities (I/DD) or other serious I/DD and medical and/or behavioral disabilities from assurances of proper care of their health and safety needs, and individuals with disabilities should not be forced to accept services or participate in activities they do not wish to accept. As Justice Ginsburg wrote in the Olmstead decision, “Each disabled person is entitled to treatment in the most integrated setting possible for that person – recognizing that, on a case by case basis, that setting may be in an institution.” (emphasis added)

■ Most individuals with disabili- CHOICE ties are capable of living just ■Individuals with disabilities like people without disabilities and should have the opportunity to do so. These individuals with disabilities should have control over their own day, including which job or educational or leisure activities they pursue, and where and how

and, where appointed by a court, their legal guardians, should have the opportunity to make informed choices among all legally available options. They must have full and accurate information about their options,

■ Most individuals with disabilities should have the opportunity to be employed in regular workplaces. Most individuals with disabilities can be employed and earn the same wages as people without disabilities. When needed, individuals with disabilities should have access to supported or sheltered employment, or other day activities, to ensure fulfilling and productive experiences.

HOUSING

■ Individuals with disabilities

have the right to choose where to live from an array of residential options.

■ Most individuals with disabilities can live in their own homes with supports and they should get to decide where they live, with whom they live, when and what they eat, who visits and when, etc.

■ These choices for most indi-

found I/DD or other serious I/DD and medical and/or behavioral disabilities from the right to live in congregate arrangements, multi-unit buildings or complexes that cater to specific needs, according to individual choice and need.

PUBLIC FUNDING

Government funding for services should support implementation of these principles to assure a full array of residential and service options to accommodate the diverse needs and preferences of the disabled population. Financing for longterm services and supports must be responsive to the needs of all individuals with disabilities, recognizing that the cost to care for individuals must necessarily vary and be responsive to varying needs. TELL US WHAT yOU THINK! Do you support these principles? VOR welcomes your comments. www.vor.net info@vor.net twitter.com/VOR_NET

viduals with disabilities should not deprive individuals with pro-

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The way in which parents relate to their children can make a huge difference in how children feel about themselves by creating a positive experience at the table and reducing their anxieties in order to teach them to respond to their world and learn to use their abilities

WHY FAMILY MEALTIMES CAN BE SO CHALLENGING BY TARA SANDRA PELHAM-FOSTER OTD, MPHA, OTR/L

or many parents it may seem like their child is becoming a picky eater, eating a limited amount of food or refusing to eat a variety of foods and making mealtimes a challenging and uncomfortable experience. Some parents may struggle to know how to manage their child’s challenging behaviors at mealtimes. They also may become concerned that a limited range of food could impact their child’s growth and development. Learning to eat and participate in mealtime activities with family and friends is a very complicated task and multiple factors may influence why it can be challenging for a child. In this article we will explore a few of the reasons why mealtime can be difficult for some children. Esdaile and Olsen1 are researchers who articulated that a child’s development is affected by the combination of the child’s interactions with his environment, the child’s interactions with caregivers, and the caregivers’ interactions within the environment. During mealtimes all these actions influence what a child learns and the way they perform. Interactions that have a reciprocal effect on each other are termed transactional interactions.

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For example, when a child is offered a taste of an apple, he will first watch how others eat the apple. The child will attend to other people’s facial expressions while they eat the apple. The person eating the apple may make a sour face or smile with satisfaction. The child may emulate these expressions or even respond based on previous experience when they saw that facial expression. Now, depending on the next action from either the adult or the child, each participant will respond again. The child might get excited and want more, or begin crying. The adult might calm them down by removing the food or give them more. These changes in responses each time a new action is performed is the transactional process between the child, the parent, the environment and the activity. The transactional process was first presented in the research literature in 1975,2, 3 but it has more recently contributed to an increased understanding of the complexities of development and in particu-


lar mealtime challenges. The biological and physiological functions that are within the child’s body influence if he is ready to eat, to manage the food within his mouth, or to be able to digest it. The factors that may affect how a child manages food within his mouth are usually associated with the sensory experience of food such as taste and texture. A child is naturally drawn to the taste of sweeter foods earlier in their development. The taste of sweetness is referred to as an innate and naturally preferred taste, even in a very young child, while salty and bitter are acquired tastes that need some perseverance before becoming palatable. These tastes often extend into late childhood before being enjoyed.4, 5 The taste of a food has a significant influence on a child’s choice of desired foods and his or her willingness to eat those foods. The addition of sugars to many processed foods within the western culture results in overexposure to sweet flavors in the food supply.4, 5 An overexposure to sweet foods may affect a child’s awareness of other tastes such as sour, bitter, and salt. Thus, a child may avoid and be less accepting of other flavored foods. No matter the flavor and tastes of the food, the child’s body must be able to digest the food that they do eat. Within the child’s body certain process take place to ensure the efficient digestion of foods for nutrition and use as energy. There has been an increase in the number of children who have sensitivities to foods such as those containing lactose and gluten.6, 7 These sensitivities may contribute to a child’s difficulty metabolizing and managing foods. Often a child with sensitivities may experience increased inflammation within the digestive system that inhibits enzyme function. When this occurs, his body is limited in the kinds of foods that he digests. When a child experiences physiological difficulties of discomfort and associate negative experiences with participating in a meal, he may quickly develop behaviors that are aimed at avoiding these experiences.4 The behaviors and skills available to a child are dependent on their age and maturity. Feeding, eating, and mealtime behaviors vary at each stage of development within a growing child. Typically, it is the skills and abilities of each developmental age that allow the child to be able to perform more competently during a meal. Children with meal-

time challenges, but who do not have a neurological or physical structural cause, usually have the capacity to demonstrate appropriate skills, yet they may still struggle with mealtime participation. Children bring a developmental readiness; an innate capacity to learn and mature that is complimented by the opportunities, and influences outside the body, to which they are exposed. These opportunities are influenced by the socioemotional and cultural traditions, habits, beliefs and interactions of the family members who surround the children. Parents and family responses to mealtime behaviors are also grounded in a family’s beliefs and values. It may be very difficult for a parent to accept, manage or adapt their own responses to certain behaviors exhibited by their child. A parent’s responses can facilitate new behaviors or exacerbate further demonstration of the same behavior. The way in which parents relate to their children can make a huge difference in how children feel about themselves by creating a positive experience at the table and reducing their anxieties in order to teach them to respond to their world and learn to use their abilities. For each unique pattern of skills and behaviors that their child exhibits, parents may promote flexibility 8 by presenting their child with new experiences with food and offering supportive and encouraging strategies for successful interactions with and around food. Selecting strategies that are supportive of a child’s behavior often originate from personally held values and beliefs. Becoming aware of these values and beliefs and the influence they may have on behaviors is a good way to understand how to modify a behavior.

LEARNING TO EAT AND PARTICIPATE IN MEALTIME ACTIVITIES WITH FAMILY AND FRIENDS IS A VERY COMPLICATED TASK AND MULTIPLE FACTORS MAY INFLUENCE WHY IT CAN BE CHALLENGING FOR A CHILD A personal exercise: Close your eyes for a moment and think back to a family meal that you remember from your childhood. Did your mother try to get everyone to eat more food? Why did she do this? Was she worried about people being hungry? Was she worried that she had not made enough? What was important to www.eparent.com/EP MAGAZINE • October 2013 61


her during the meal? What role did your father have at the table? Was he supportive, was he absent? Did he participate in preparing the food? Was he the peace maker, keeping everyone calm, or perhaps the disciplinarian, the parent who reprimanded the children at the table? Perhaps, like my father, he rallied the crowd and made everyone more excited. Recall now, how you felt sitting at the table. Did some mealtimes leave you feeling anxious or excited? What rules were you expected to follow? What type of foods did you most enjoy? What aspect of the meal made you feel good about eating your food or being with your family? These are the influences emanating from the values and beliefs of your parents. Reflect now on some of the habits, roles or cultural influences you have continued within your own family. What expectations do you have of yourself and your child that may come from these earlier experiences? In this article we have learned of the reciprocal transactional process which each element of mealtime influences, and is influenced by the other. We have also considered some of the influences within the child’s body and outside the child’s body. Reflecting on personal beliefs and expectations and the transactional nature of the interactions with their child, parents can begin to understand and perhaps help moderate some of their concerns about their child’s mealtime challenges.•

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References 1 Esdaile, S.A., & Olson, J. (2004) Mothering occupations: Challenge, agency, and participation. Philadelphia, PA: F.A. Davis. 2 Sameroff, A.J., & Chandler M.J. (1975). Reproductive risk and the continuum of caretaking causality. In M. Hororwitz, M. Hetherington, S. Scarr-Salapatek, & G. Sigel (Eds.). Review of Child Development Research, Vol 4. Chicago: University of Chicago Press. 3 Bronfenbrenner, U. (1979). The ecology of human development. Cambridge, MA: Harvard Press. 4 Havermans, R., & Jansen, A. (2011). Acquired tastes: Establishing food (dis-)likes by flavour-flavour learning. V.R. Preedy et.al (eds.), Handbook of behavior, food and nutrition. Sheffield, UK: Springer Science and Business Media. DOI 10.1007/978-0-387-92271-3-6 5 Richardson, P., & Saliba, A. (2011). Personality traits in the context of sensory preferences: a focus on sweetness. V.R. Preedy et.al (Eds.), Handbook of behavior, food and nutrition. Sheffield, UK: Springer Science and Business Media. DOI 10.1007/978-0-387-92271-3-7 6 Riddle, M.S., Murray, J.A., & Porter,C.K. (2012). The Incidence and risk of celiac disease in a healthy US adult population. American Journal of Gastroenterology, 107.1248-1255. 7 Tanpowpong, P., Ingham, T. R., Lampshire, P. k., Kirchberg, F., Epton, M. J., Crane, J., Camargo Jr, C.A., New Zealand Asthma & Allergy Cohort Study Group. (2013). Coeliac disease and gluten avoidance in New Zealand children. Archives of Disease in Childhood, 97. 12-16 8 Greenspan, S. I. (1995). The challenging child. Reading, MA: Perseus Books.

ABOUT THE AUTHOR: Dr. Sandra Pelham-Foster is associate professor at Pacific University, school of occupational therapy doctorate program, and educates student on pediatric development and disabilities. Sandra works with children and families in developmental evaluation and intervention programs in Portland, Oregon. Sandra specializes in developmental feeding and mealtime behavioral challenges. This article is an excerpt from a chapter in a book for parents on mealtime challenges of children and adolescents, scheduled for publication in 2015. Sandra can be contacted at Pacific University, pelhamfoster@pacificu.edu 503-352-7352


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

MILITARY SECTION

64 FINAL RULE: VIETNAM ERA VETERANS’ READJUSTMENT ASSISTANCE ACT 66 MILITARY NEWS PUZZLES & CAMO

68 WHAT HATE CAN AND CAN’T DO By Shelly L. Huhtanen


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EMPL YMENT & TRANSITI NING

Final Rule VIETNAM ERA VETERANS’ READJUSTMENT ASSISTANCE ACT n August 27, 2013, the U.S. Department of Labor’s Office of Federal Contract Compliance Programs announced a Final Rule that makes changes to the regulations implementing the Vietnam Era Veterans’ Readjustment Assistance Act, as amended (VEVRAA) at 41 CFR Part 60300. VEVRAA prohibits federal contractors and subcontractors from discriminating in employment against protected veterans, and requires these employers to take affirmative action to recruit, hire, promote, and retain these veterans. The Final Rule strengthens the affirmative action provisions of the regulations to aid contractors in their efforts to recruit and hire protected veterans and improve job opportunities for protected veterans. The Final Rule will be published in the Federal Register shortly and is effective 180 days after its publication. However, current contractors with a written affirmative action program (AAP) already in place on the effective date have additional time to come into compliance with the AAP requirements. The compliance structure seeks to provide contractors the opportunity to maintain their current AAP cycle.

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Highlights of the Final Rule Rescission of 41 CFR Part 60-250: The Final Rule rescinds the outdated 41 CFR Part 60-250 in its entirety. However, veterans that were formerly protected only under Part 60-250 will still be protected from discrimination under the revised 41 CFR Part 60-300.

HIRING BENCHMARKS The Final Rule requires that contractors establish annual hiring benchmarks for protected veterans. Contractors must use one of two methods to establish their benchmarks. Contractors may choose to establish a benchmark equal to the national percentage of veterans in the civilian labor force, which will be published and updated annually by OFCCP. Alternatively, contractors may establish their own benchmarks using certain data from the Bureau of Labor Statistics (BLS) and Veterans’ Employment and Training Service/Employment and Training Administration (VETS/ETA) 64 October 2013 • EP MAGAZINE/www.eparent.com

that will be also be published by OFCCP, as well other factors that reflect the contractor’s unique hiring circumstances. The data will be posted in the Benchmark Database (coming soon).

DATA COLLECTION The Final Rule requires that contractors document and update annually several quantitative comparisons for the number of veterans who apply for jobs and the number of veterans they hire. Having this data will assist contractors in measuring the effectiveness of their outreach and recruitment efforts. The data must be maintained for three years to be used to spot trends.

INVITATION TO SELF-IDENTIFY The Final Rule requires that contractors invite applicants to self-identify as protected veterans at both the pre-offer and post-offer phases of the application process. The Final Rule includes sample invitations to self-identify that contractors may use. INCORPORATION OF THE EO CLAUSE The Final Rule requires that specific language be used when incorporating the equal opportunity clause into a subcontract by reference. The mandated language, though brief, will alert subcontractors to their responsibilities as Federal contractors.

JOB LISTINGS The Final Rule clarifies that when listing their job openings, contractors must provide that information in a manner and format permitted by the appropriate State or local job service, so that it can access and use the information to make the job listings available to job seekers. RECORDS ACCESS The Final Rule clarifies that contractors must allow OFCCP to review documents related to a compliance check or focused review, either on-site or off-site, at OFCCP’s option. In addition, the Final Rule requires contractors, upon request, to inform OFCCP of all formats in which it maintains its records and provide them to OFCCP in whichever of those formats OFCCP requests. – Department of Labor website


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Promoting Opportunity for Veterans and Disabled Workers BY SECRETARY TOM PEREZ, UNITED STATES SECRETARY OF LABOR n my first day as secretary of labor, I made it clear that protecting and promoting opportunity for America’s workers is my top priority. Today, Vice President Biden announced two new actions that will do exactly that – strengthening civil rights laws to create more economic opportunity for veterans and people with disabilities. For four decades, the Vietnam Era Veterans’ Readjustment Assistance Act and Section 503 of the Rehabilitation Act have prohibited employment discrimination on the basis of veteran status or disability. These laws have required federal contractors and subcontractors to affirmatively recruit, hire, train and promote qualified individuals. But unfortunately, the laws haven’t always worked as intended. People with disabilities, who have an enormous contribution to make to our economy, and veterans, who have risked life and limb on our behalf, are still disproportionately represented among the unemployed and those out of the workforce entirely. So the steps we are announcing will ensure that qualified workers have more meaningful opportunities to find, secure and keep good jobs. We are providing specific metrics to help contractors measure their progress toward achieving equal opportunity for people with disabilities and protected veterans. We are clarifying expectations, making legal requirements more effective and facilitating compliance with the law.

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READ THE RULES AND OTHER MATERIALS ON OUR WEBSITE AT WWW.DOL.GOV/OFCCP/VEVRAARULE AND WWW.DOL.GOV/OFCCP/503RULE I believe promoting and protecting opportunity is only possible through collaboration, consensus-building and pragmatic

problem-solving. And that has been exactly the protocol here − the department developed these rules through a multiyear process of stakeholder engagement and consultation. Since 2010, the department’s Office of Federal Contract Compliance Programs has met with advocates, policymakers, employer groups, workers and job seekers. We listened to their stories about the challenges facing veterans and people with disabilities in the workforce, and we saw the limitations of the legal requirements designed to assist these populations. We also listened to contractors, and we made appropriate changes to address their concerns about how best to implement these necessary improvements. We know that these regulations represent a change for contractors and we are ready to facilitate their success. OFCCP staff will be on hand to provide compliance assistance. Being a federal contractor is a privilege − one that comes with the reasonable responsibility to abide by the law and provide equal employment opportunity to all workers. Today’s new rules make those expectations clearer and more meaningful. We will continue to work with all stakeholders as they implement these changes, promoting opportunity and access for millions of workers across thousands of workplaces. These new rules are a win-win. They will benefit veterans and people with disabilities, who belong in the economic mainstream of the nation but have faced unfair barriers in the job market. They will benefit employers who do business with the federal government, increasing their access to a large, diverse pool of qualified workers. And they will benefit the entire nation, as these rules help us fulfill the American promise of equal opportunity for all. – Department of Labor website

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MILITARY NEWS THE LATEST ADVANCES IN TECHNOLOGY FOR PEOPLE WITH SPINAL CORD INJURY special issue of The Journal of Spinal Cord Medicine, pub- and more efficient upper body training to aid rehabilitation and lished by Maney Publishing, examines various advances boost overall health. GPS is being used to evaluate the details of made in technology to aid people with spinal cord wheelchair tennis play, enabling coaches to develop and monitor training regimens. injury (SCI). Scientists from all over Other advances in wheelchair the world contributed to the special technology allow for superior use, issue, focusing on five areas: such as the power wheelchair which advances in wheelchair technology; is capable of climbing curbs and wheelchair sports; personal health maneuvering round obstacles. and safety; innovations in rehabilitaHowever, a common problem faced tion; and closing the gaps in educaby wheelchair users is increased tion and employment. exposure to vibration, which can The studies also incorporate the damage muscles, nerves and cause views of the end-users that have parback pain. Devices that collect data ticipated throughout the research from wheelchair users indicate the design and development of the new need for vibration-dampening cushtechnologies. These advances are ions or suspension systems. empowering those with SCI and Prolonged sitting is also a risk factor enabling them to lead fuller and for pressure ulcers, a debilitating more active lives, as everyday activicomplication that diminishes quality ties become easier and more accessiof life. The research shows that coolble. One year after injury, 12% of DR. COOPER: “Ideally, in the future, we will see ing the tissues under pressure can people with SCI are now employed. more teams of scientists, engineers, and clinicians reduce the risk for skin breakdown, The issue is guest edited by Dr. that include people with and without SCI Rory Cooper, a member of the jour- working together to conduct pioneering research, and suggests the use of temperature control mechanisms in cushions nal’s Editorial Board. Dr. Cooper to create transformational technology, and to and mattresses. serves as Engineering Director of establish model clinical programs.” To view the special issue, Volume the University of Pittsburgh SCI Model System. His commentary, “Technology, trends, and the 36.4, of which the editorial is freely available, visit: future for people with spinal cord injury,” is available for free http://bit.ly/18wfA9k Dr. Cooper is the FISA/PVA Endowed Chair and a download, in which he comments: “Ideally, in the future, we will see more teams of scientists, engineers, and clinicians Distinguished Professor of the Department of Rehabilitation that include people with and without SCI working together to Science and Technology, School of Health and Rehabilitation conduct pioneering research, to create transformational tech- Sciences, University of Pittsburgh. He is also the Center Director nology, and to establish model clinical programs. Assuredly, at the Center of Excellence for Wheelchair and Related technology will play a major role to make this vision of the Technology, VA Rehabilitation Research & Development Center, and a Senior Research Career Scientist at the VA Rehabilitation future become reality.” Applying technology to rehabilitation is helping to restore Research and Development Service, U.S. Department of the abilities to use arms and legs immobilized by spinal cord Veterans Affairs. injury, as well as to control bladder function. Neuroprostheses The Journal of Spinal Cord Medicine, are devices that use electrodes to deliver electrical stimulation the peer-reviewed journal of the to areas where function has been lost due to injury. They offer Academy of Spinal Cord Injury tremendous potential for restoring motor, sensory and bladder Professionals, is an international journal function in people with SCI. Virtual reality is being utilized in serving professionals from medicine, robotic exoskeletons such as ReWalk to enable those with SCI nursing, physical and occupational therto stand and walk, and in the evaluation of wheelchair driving apy, engineering, psychology and social performance. work. For more information, visit: Activities like sports are benefiting from these advances too – www.maneypublishing.com a growing area, particularly following the 2012 Olympic Games. Equipment such as the hand cycle enables less stressful

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VETERANS AFFAIRS REHABILITATION R&D SERVICE AWARDS FUNDING FOR RESEARCH ON IDA MOTIVATIONAL TOOLS he Rehabilitation R&D Service of the Veterans Administration has awarded funding for a pilot study that will explore whether the Ida Motivation Tools and motivational interviewing techniques can help patients make the behavioral changes necessary to ensure positive hearing aid use. Samantha Lewis, PhD, staff investigator at the U.S. Department of Veterans Affairs’ National Center for Rehabilitative Auditory Research and assistant professor in the Department of Otolaryngology at the Oregon Health and Science University, is the principal investigator for the project, titled “Applying the Use of Motivational Tools to Auditory Rehabilitation.” The Motivational Tools will be used as a means to explore and address patient’s prioritization of and confidence in hearing aids. Dr. Lewis, who received training from the Ida Institute on the use of the Motivational Tools, will conduct the pilot study at the U.S. Veterans Affairs Medical Center in Portland, Oregon. The study will be a randomized clinical trial, where unsuccessful hearing aid users will be randomized to either receive a motivational interviewing intervention (treatment group) or to review

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standard literature with an audiologist (control group). One method will provide the control group with routine information regarding the care and use of hearing aids, which is the standard of care. In the treatment group, the Motivational Tools will be used to address patient-specific barriers to and motivators for successful hearing aid use. The study hypothesizes that the use of the motivational counseling technique will result in greater hearing aid use and better hearing aid outcomes. Through the pilot study, researchers will look to identify information crucial for conducting a large-scale randomized trial exploring the use of proposed motivational intervention as a means for improving hearing aid use, and potentially other patient outcomes. In her application for the VA RR&D funding, Dr. Lewis notes the easy transition of the Motivational Tools from the laboratory to the clinic, “is a strength of this proposal, as it could result in immediate improvements for our Veterans with hearing loss who are currently having a difficult time adjusting to hearing-aid use.” The two year study is expected to be completed in 2015.

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PUZZLES & CAMO

SHELLY HUHTANEN

What Hate Can and Can’t Do I feel awful that any family would feel the hate that was experienced that day in Canada, but I can’t help but think there is a lot of good that is happening in our society too.

There has always been

ing to keep out the explicahate, but for the last few weeks I have tive language, of course. I been inundated with blogs and articles will admit, I contemplated discussing hate, more specifically, hatred writing a hypothetical letter against people with special needs. A few myself because the anger I weeks ago, I read a story from the felt toward this neighbor in Huffington Post describing an awful and Canada was so raw, since I disgusting letter sent to a neighbor in have a son with autism. After taking a step back, I Canada. A neighbor did not like the fact that a child with autism lived near them spent some time trying to and they were horrified that they saw the find some good from this horrible situachild playing outside because they could tion. There had to be something uplifting see the child’s behavior and hear the out of this dreadful occurrence towards noises the child made. What was so vile this family raising their child with about the letter was that they did not see autism. One thing came to mind was that the neighbor’s child as a child. They this awful hate letter created dialog about seemed to think that because the child children with autism and the families happened to have autism, then he had no who are raising them. Everyone started value or reason to be living on this plan- talking around the dinner table or at et. The letter recommended they eutha- work about autism and the need for tolerance. This story nize the child and was on the news, give his organs to written about in typically developnews articles, ing people who Facebook, and may need them. every other media If anyone spends outlet. I did not at least a few read one blog or moments of their article saying that time on Facebook, they thought the you can only imaghateful neighbor ine how many was in the right. I times this story was ZERO TOLERANCE FOR HATE “I’d like to only read support passed around and think that our society is slowly starting for the family with then littered with to move into the right direction.” comments condemning the hateful the child with autism. So much so, that neighbor and how they should be hunted the neighborhood started to rally around down and held accountable. Bloggers the family to show them that they started to dedicate their weekly and accepted and supported them and their monthly blogs to writing hypothetical special needs child and showing zero tolletters to this neighbor. Many of these erance for hate. We have not seen the hypothetical letters were written by par- hateful neighbor because they have not ents of special needs children, so one can come out to stand by their letter. Instead, only imagine the venom that was drip- they have been cowards and have ping from each letter as they questioned crawled back into their home while their the hater’s very own need to exist and neighborhood has stepped forward, suphow our society would be better off if porting the very family they have taunted they would go jump off a cliff. I’m choos- and threatened. 68 October 2013 • EP MAGAZINE/www.eparent.com

Today after church, my mother took my son with autism to the bathroom. There was a long line of about 8 to 10 people. As my mother held my son’s hand and queued up, she said out loud, “This line is too long. My grandson has autism and there is no way he’ll be able to wait.” As my mother started to admit defeat and see if he could hold it until we got home, a woman similar to my mother’s age spoke up. She said, “I have a grandson with autism and you are going to the front of the line.” My mother looked at the ladies in line and they didn’t question the decision to move. Every woman stepped to the side and let my mother take my son to the front to occupy the next stall. My question is, “Is it possible that a few of those ladies heard about the story in Canada?” I wonder if they read a heartfelt blog from a mother with a special needs child in response to the hate that was experienced that day. As our society talks more about autism, did it empower the grandma who has a grandchild with autism to speak up? I’m not sure, but I would like to think that our society is slowly starting to move into the right direction. I feel awful that any family would feel the hate that was experienced that day in Canada, but I can’t help but think there is a lot of good that is happening in our society too. Perhaps the louder we express our support for families affected by special needs, the easier it will be to drown out the hatred.• PUZZLES & CAMO Shelley Huhtanen is an Army wife with two children, one with autism, whose husband is currently stationed at Fort Hood, TX. She is an autism advocate and currently the parent liaison for the Academy for Exceptional Learners.


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