HOW CHARTER SCHOOLS and VOUCHERS AFFECT SPECIAL


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HOW CHARTER SCHOOLS and VOUCHERS AFFECT SPECIAL EDUCATION EXCEPTIONAL PARENT MAGAZINE SEPTEMBER 2017 $7.95

INFORMED DECISIONS:

SPECIAL ED DISPUTE RESOLUTION

AND:

STREAMLINING the SCHOOL ENTRY PROCESS in SPECIAL EDUCATION

BACK TO SCHOOL PLUS: AN EP EXCLUSIVE

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FOCUS on ARGINASE DEFICIENCY

CONTENTS

SEPTEMBER 2017 VOLUME 47 ISSUE 8

BACK TO SCHOOL 30 TRANSITIONING FROM PRE-SCHOOL TO ELEMENTARY SCHOOL, AND BEYOND: STUDENTS WITH SPECIAL EDUCATION SERVICES GENETIC ALLIANCE

23 TEENS AND TECH: REMAINING AWARE AND RESPONSIBLE IN THE SOCIAL MEDIA AGE By Cecelia Tamburro COVER STORY

26 HOW CHARTER SCHOOLS AND VOUCHERS AFFECT SPECIAL EDUCATION By Maria Docherty and Lauren Agoratus, M.A.

By Diane Wiscarson, Wiscarson Law

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32 WHERE DO WE GO FROM HERE? MAKING INFORMED DECISIONS ABOUT SPECIAL EDUCATION DISPUTE RESOLUTION By William Blackwell, ED.D

37 HELPING PARENTS HELP THEIR KIDS THRIVE IN SCHOOL By Katherine Firestone MILITARY SECTION

62 PREPARING THE MILITARY FAMILY FOR THE JOURNEY

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By Angela Shaw

FEATURES 40 MY NAME IS JACKSON FUKUDA AND I HAVE ARGINASE DEFICIENCY: I AM A 26-YEAR-OLD GRAPHIC DESIGNER... By Jackson Fukuda

46 DEVELOPMENTAL COORDINATION DISORDER: THE “HIDDEN” FACET OF AUTISM SPECTRUM DISORDER By Dr. Shelley Margow, OTD, OTR/L

52 PRACTICE WITHOUT PRESSURE By Deborah Jastrebski

54 IMPROVING HEALTH WORLDWIDE TO THE MOST UNDERSERVED By Kristin Hughes Srour, MBA

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57 ENHANCING LIVES OF PEOPLE WITH DOWN SYNDROME By Sara Hart Weir, MS

50 PUBLIC BENEFITS: A HOLISTIC GUIDE FOR FAMILIES WHO HAVE A LOVED ONE WITH SPECIAL NEEDS By Caleb Harty

ON OUR COVER Lucas Quitoni is ready for his first day of school. His parents, like many of those raising children with disabilities, are asking questions about how charter schools and vouchers impact special education. Those questions, and many others, are addressed in our Annual Back to School Issue. Coverage begins on page 23. Photo provided by The National Down Syndrome Society.

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EXCEPTIONAL PARENT | EP Magazine • September 2017 1

CONTENTS DEPARTMENTS ANCORA IMPARO

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SEPTEMBER 2017 VOLUME 47 ISSUE 8

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ON COMING OUT OF THE OVEN TOO SOON By Rick Rader, MD

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WHAT’S HAPPENING

10 NEW PRODUCTS AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE AND DENTISTRY

14 ARCHAEOLOGICAL DIG UNCOVERS THE REMAINS OF DISABLEDINSTITUTIONALUS (REPORT DATED: 2050) By H. Barry Waldman DDS, MPH, PHD, Steven P. Perlman DDS, MSCD, DHL (Hon), and Rick Rader, MD ORGANIZATION SPOTLIGHT

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

17 AMERICA’S TOOTHFAIRY: NATIONAL CHLDREN’S ORAL HEALTH FOUNDATION By Jill Malmgren

68 PRODUCTS & SERVICES

MILITARY SECTION MILITARY LIFE

60 RECOGNIZING THE SIGNS OF STRESS IN CHILDREN AFTER A DISASTER BACK TO SCHOOL

62 PREPARING THE MILITARY FAMILY FOR THE JOURNEY By Angela Shaw PUZZLES & CAMO

66 THE BIG CHEESE By Shelly Huhtanen

MILITARY LIFE

60 RECOGNIZING THE SIGNS OF STRESS IN CHILDREN AFTER A DISASTER 62 PREPARING THE MILITARY FAMILY FOR THE JOURNEY By Angela Shaw PUZZLES & CAMO

66 THE BIG CHEESE By Shelly Huhtanen

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

Information and Support for the Special Needs Community

VOLUME 47 ISSUE 9



ESTABLISHED 1971

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

Len Harac

• Lois Keegan • Faye Simon • Leverett Cooper • Dennis Dusevic • Ron Peterson

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

Publishing & Editorial Office 1360 Clifton Avenue, Ste. 327 Clifton, NJ 07012

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Exceptional Parent (ISSN 0046-9157) is published monthly 11 times per year plus the special January Annual Resource Guide by TCA EP World, LLC, dba Exceptional Parent Magazine, 1360 Clifton Avenue, Ste. 327, Clifton, NJ 07012 Internet address: http://www.eparent.com. All rights reserved. Copyright ©2017 by TCA EP World, LLC. Exceptional Parent™ is a registered trademark of TCA EP World, LLC Postmaster: Please send address changes to: Exceptional Parent,1360 Clifton Avenue, Ste. 327, Clifton, NJ 07012. Any applicable periodical postage paid at Johnstown, PA and additional mailing offices (USPS 557-810). . Basic annual subscription for EP Digital is free. Limited edition print subscription $95.00. Subscriber Service: Direct all inquiries & address changes to: Exceptional Parent, 1360 Clifton Avenue, Ste. 327, Clifton, NJ 07012 08758. Customer Service/New Orders: E-mail: [email protected] or call toll free: (800) 372-7368 extension 119. Exceptional Parent. Back issues incur a charge of $10.00 each and depend upon availability, call (800) 372-7368. Agreement # 1420542

EP EDITORIAL ADVISORY BOARD

Jean F. Campbell Principal, JF Campbell Consultants; Founding Board Member, Professional Patient Advocates in Life Sciences (PPALS) Henry G. Chambers, MD Pediatric Orthopedic Surgeon, Rady Children’s Hospital; Prof. of Clinical Orthopedic Surgery, Univ. of California, San Diego

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

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

Matthew Holder, MD CEO, Lee Specialty Clinic, Louisville, KY Global Medical Advisor for Special Olympics International

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

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

Gary Liguori, Ph.D Fellow of the American College of Sports Medicine (ACSM), Dean, College of Health Sciences, University of Rhode Island

Allen Friedland, MD Pediatrician and Internist Pediatric to Adult care Advisor Wilmington, Delaware Saadi Ghatan, MD Assistant Prof. of Neurological Surgery, Division of Pediatric Neurological Surgery, Columbia College of Physicians and Surgeons, Columbia Medical School, New York, NY Joan Earle Hahn, Ph.D., APRN, CGNPBC, GCNS-BC, CNL, CDDN, Gerontological Advanced Practice Nurse Consultant; Past President, Developmental Disabilities Nurses Association

Patricia E. McGoldrick, CPNP Pediatric Neurology & Epilepsy, Associate Director, Developmental Disability Center, Roosevelt Hospital, NY Kathryn O’Hara, RN Epilepsy Nurse Clinician, Nurse Manager Child Neurology, Division of Child Neurology, Virginia Commonwealth University, Richmond, VA

Esther Schleifer, MSW Clinical Social Worker, Boston, MA Howard Shane, PhD Director, Communications Enhancement Center, Children’s Hospital, Boston, MA Stephen B. Sulkes, MD Pediatrician, University of Rochester Medical Center, Rochester, NY Steven M. Wolf, MD Director of Pediatric Epilepsy at Beth Israel Medical Center, New York, NY; Director of Pediatric Neurology at St. Lukes Roosevelt Medical Center, New York, NY

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

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

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

Endorsed & AL ME DICI NE

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

Kyle Hauth Executive Director, Orange Grove Center, Chattanooga, TN

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

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

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

EXCEPTIONAL PARENT | EP Magazine • September 2017 3

ANCORA IMPARO

RICK RADER, MD



EDITOR-IN-CHIEF

BOARDWALK BABIES: Employees stand outside of the Infant Incubators building at the 1901 Pan-American Exposition in Buffalo, NY.

On Coming Out of the Oven Too Soon In the 1920’s, babies like Lucille faced almost certain demise. Lucille did not escape the inevitable and she passed away… but not until she celebrated her 96th birthday. Lucille died earlier this year after living a very meaningful life.

In the late 1930’s American songwriter Johnny Mercer wrote a classic tune that had the entire nation singing, You must've been a beautiful baby You must've been a beautiful child When you were only startin' To go to Kindergarten I bet you drove those other childs wild An' when it came to winnin' blue ribbon Well, I bet you taught the other kids how Well, I can see the judges' eyes As they handed you the prize I bet you took the cutest bow Yeah, you must've been a beautiful baby 'Cause baby won't you look at you now

While New Yorker Lucille Conlin Horn eventually became a “beautiful baby,” she certainly wasn’t anything to look at when she was born. In fact it was predicted she wouldn’t last long. Lucille weighed barely two pounds when she was born; a weight that put her in the category of low expectations for survival. Even with today’s technology and the life sustaining protocols employed in the neo-natal intensive care units, the odds of her leaving the hospital would be low and with limited chances of normal development. A twopound baby today has the survival odds against her. Back in the early 1920’s, when

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Lucille was born, there was little hope for her survival. Hopes for her survival was so low that the physician who delivered Lucille and her twin sister (who died at birth) suggested to her parents that they delay the funeral for her sister and wait for Lucille’s soon-to-come death. Premature babies (known as “preemies”) are born before 37 weeks and may have life-long health problems even if they survive. About 1 in 10 babies is born prematurely each year in the United States Premature infants are at greater risk for cerebral palsy, delays in development, hearing problems, and sight problems. These risks are greater the earlier a baby is

PHOTO COURTESY LIBRARY OF CONGRESS

WHAT’S HAPPENING born. Preterm birth is the most common cause of death among infants worldwide. Low birthweight babies are born weighing less than 5 pounds. About 1 in every 12 babies in the United States is born with low birthweight. Modern medicine has improved the survival and developmental rates of low birthweight babies, including the survival of newborns weighing as little as a can of Coke. ut in the 1920’s, babies like Lucille faced almost certain demise. Lucille did not escape the inevitable and she passed away… but not until she celebrated her 96th birthday. Lucille died earlier this year after living a very meaningful life. When Lucille’s father heard the doctor tell them to wait until she died and have a dual funeral, Lucille’s father fired back, “That’s impossible. She’s alive now and we have to do something for her.” He did something. He wrapped her in a towel and took her in a cab to the amusement park at Brooklyn’s Coney Island to see Dr. Martin Couney. Dr. Couney was a pioneer in the use of incubators in the treatment of premature babies. There was no hospital, no clinic or no lab. The babies were placed in Couney’s incubators and put on display in boardwalk sideshows. Couney charged money to curious patrons and used the money to fund his research and to hire nurses. He never accepted money from the babies’ parents. Lucille was on display for five months until she was healthy enough to go home; and begin living for the next 96 years. The babies were placed in glass incubators and barkers (including a young Cary Grant) invited passers-by to come inside and see these “preemies” and their fight to

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survive. The incubator exhibits (found in amusement parks, state fairs, tourist attractions) were often next door to exhibits featuring sword swallowers, FourLegged Women, and the Lion Faced Man first opened in 1903 and ran until the early 1940’s. According to William Brangham writing for the PBS Newshour, “Couney died in relative obscurity, he was one of the great champions of this lifesaving technology and is credited with saving the lives of thousands of the country’s premature babies.” Like all visionaries he was ignored by mainstream medicine and was accused of being nothing more than a showman. Perhaps he was; he was known to “occasionally dress his preemies in overly-large baby clothes to emphasize how tiny they were.” And perhaps that was necessary to get a reluctant medical community to understand and endorse this new technology. Seems as if babies aren’t the only things to appear prematurely; new ideas, new beliefs and new tools often come before they are fully developed. We have to rely on pioneers, mavericks and disrupters to nurture them and usher them to the forefront. Generations of Exceptional Parents continue to rely on them and quietly celebrate them and continue to sing, “Cause baby won’t you look at you now.” •

“Seems as if babies aren’t the only things to appear prematurely; new ideas, new beliefs and new tools often come before they are fully developed. We have to rely on pioneers, mavericks and disrupters to nurture them and usher them to the forefront.”

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

AUTHOR TO DONATE 100% OF SEPTEMBER BOOK SALES FOR HURRICANE HARVEY

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anny Huynh knows what it is like to bounce back from adversity. He was just eight years old when his parents fled Vietnam via Cambodia on foot with bullets whizzing over their heads 34 years ago. At one checkpoint after his mother ran out of valuables with which to bribe the soldiers, Wanny and his 10-yearold brother were taken from the family. Left on their own with only the clothes on their backs they were eventually given shelter by a soldier whose wife used them as slaves. After being reunited with his family two months later, Wanny spent time in a refugee camp before entering the second grade in the U.S. knowing almost no English. As a first generation immigrant, a survivor, a motivational speaker and author of four books, Wanny wants to offer hope and comfort to the survivors of Hurricane Harvey who, as he once did, may be wondering how they could possibly put their lives back together. That is why during the month of September he is donating all proceeds from his latest book, HOPE: The Path to Happiness, Opportunity, Prosperity and Enjoyment to the Red Cross. The book can be purchased at At 42, Wanny Huynh has led a remarkable life that required him to become a master at adaptation. He came to America as a young child knowing little English after fleeing war torn Vietnam and Cambodia. As an adult he overcame homelessness and poverty to become an inspirational speaker and author of four self-help books including How to Overcome Anything, The Five Laws to Wealth, Success and Happiness, and Procrastination to Finisher.•

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Protecting Your Children from Peanut Allergies A common question among new parents is “How can I protect my baby from getting food allergies.” This is a well-founded question considering that the Food Allergy Research and Education (FARE) association (www.foodallergy.org/facts-and-stats) reports approximately 15 million people in the United States have food allergies. Close to 6 million of these individuals are children. As such, food allergies have become a major public health issue in the past decade with a 50% increase in hospital visits for anaphylaxis, a severe reaction to an allergen such as eggs or peanuts. More specifically childhood hospitalizations for serious reactions to food allergies have tripled. Allergic reactions, including life-threatening anaphylactic shock occur because the body’s immune system reacts inappropriately to an allergen that the body incorrectly NUTTY STUDY: Frequent consumption of peanut protein starting at 4-11 perceives as a threat. The most common food allergies are months of age is extremely effective in preventing a peanut allergy. peanut, soy, cow’s milk, egg, wheat, seafood, fish and tree nuts. Among these, peanut and egg allergies are the most common recommended at 4-6 months of age. Group 2: Infants with mild to moderate eczema. It is not in infants and toddlers. While some children will outgrow some required that these infants be evaluated by a physician prior to food allergies, peanut allergies are unfortunately often lifelong. peanut introduction. They should be introduced to age appropriate peanut containing foods around 6 months of age. Some parents THE STUDY: The good news is parents finally have an answer to their question about how to best prevent peanut allergies in the and or medical providers of infants in this group may request an in LEAP study (Learning Early About Peanut allergy www.leapstudy.com). office visit to supervise peanut introduction. Group 3: Infants with no signs of eczema or This was a clinical trial that looked at children any food allergy. These infants should be introwho were considered to be at high risk of develduced to age appropriate peanut containing oping a peanut allergy. Half of the children were foods and in accordance with family preferences introduced to peanut proteins early (4-11 and cultural practices. months of age) and frequently (3x/week). The Two points of attention: One, if your infant other half completely avoided peanut products. develops concerning symptoms after introducing peanut containing foods, parents need to THE RESULTS: Children who avoided peanut contact their health care provider for evaluation containing foods had a much higher incidence of a possible peanut allergy. Secondly, the NIAID of having a peanut allergy compared to children guidelines address prevention of peanut allergy who had consistently and frequently consumed and are not to be applied by anyone with a peanut products from a young age. Put simply, Simply Peanut, developed known peanut allergy. The guidelines are not a the LEAP study demonstrated that even in highunder the direction of treatment recommendation. risk infants, frequent consumption of peanut Pediatricians and Allergists, The key takeaway for parents from the LEAP protein starting at 4-11 months of age is contains a combination of study and the new NIAID guidelines is early extremely effective in preventing the developorganic peanut flour and introduction and frequent administration of ment of a peanut allergy. vitamins for an immune peanuts to infants, and not the traditionally recboost while safely introducommended avoidance. THE NEW GUIDELINES: The National ing peanuts. Parents may Institute of Allergy and Infectious Diseases start their infant on Simply (NIAID) has published new guidelines to help WHAT CAN PARENTS DO? So how do you Peanut at 4 months of age pediatricians and parents know how and when safely introduce peanuts to a baby at 4 to 6 and give it 3 times a week. to safely introduce infants to peanuts. months of age? Whole peanuts, peanut butter, Group 1: Infants with severe eczema, egg and peanut snacks are all choking hazards. allergy or both. These infants have the highest risk of developing a Additionally, peanut butter is often packed with salt, sugar, and peanut allergy and should be evaluated by a physician prior to cornstarch. An option available is a product called Simply Peanut.™ peanut introduction. If deemed safe peanut introduction is then Learn more at www.simply-peanut.com 6 September 2017 • EP Magazine | EXCEPTIONAL PARENT

PHOTO COURTESY WWW.DOL.GOV

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NJ TEEN AWARDED $36K FOR LAUNCHING COMIC BOOK SERIES FOR SIBLINGS OF INDIVIDUALS WITH SPECIAL NEEDS ast August, Julie Averbach from Short Hills, with the other teens and previous award winners NJ was awarded $36,000 by the Helen at the luncheon to continue growing her project. Diller Family Foundation in recognition of The luncheon celebration was the culmination her commitment to tikkun olam (repair the world). of a weekend-long series of business strategy At a luncheon at San Francisco’s Four Seasons Hotel workshops, networking and mentoring initiatives, Julie, along with 14 other young leaders from during which award winners exchanged ideas across the nation, received the national 2017 with other socially conscious peers and interacted Diller Teen Tikkun Olam Award (www.dillerwith Diller Teen Tikkun Olam Award alumni from years past who are continuing their social justice teenawards.org), a prestigious honor given to youth work. leaders who have demonstrated exceptional leadA highlight of the luncheon was the debut of a ership, community service and action. special documentary-style video that featured the Julie was selected for this award among hunaccomplishments of all 15 teens in a behind-thedreds of teens because of her work on Adventures COMIC BOOK HERO: Julie scenes chronicle of their leadership achievements. from My World (www.adventuresfrommyworld.com), a comic Averbach’s comic reassures The video showcases each teen’s projects and book series that spotlights the unique challenges siblings that they are not illustrates an individual’s ability to affect global and joys that siblings of special needs individuals alone and empowers individuals to express their change through leadership and community and encounter daily. Her project has globally expandemotions more openly. service, and inspires hope for viable solutions to ed to help families across the world understand their family member’s disability in a fun and creative way, and even the world’s toughest problems. View the video at www.dropbox.com/s/17blrd5f5eoxf1j/Diller2017 Final.mp4?dl=0 she plans on utilizing the $36,000 and the connections she made

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KEEPERS OF THE FLAME: North Caldwell Police Chief Mark Duer (right) President of the Essex County Chiefs of Police Association who ran the North Caldwell to Little Falls leg, with his longtime friend and Special Olympian Michael John Sabato (left) .

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he 2017 Law Enforcement Torch Run took place on Friday, June 9th as more than 3,000 officers took to the streets of their local communities on one of 26 separate routes to help carry the “Flame of Hope” to the Special Olympics New Jersey Summer Games. The culmination of the run was the lighting of the Special Olympics New Jersey cauldron at the Opening Ceremony to officially open the event featuring more than 2,500 Special Olympics athletes.•

PHOTOS COURTESY HELEN DILLER FAMILY FOUNDATION / NJ LAW ENFORCEMENT TORCH RUN

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P L AY E R

Easy-to-load, switch-activated music player makes listening to MP3 and WA WAV files accessible! The Joy Player is designed for individuals who are developing fine motor skills, have limited mobility, or cognitive disability in addition to a visual impairment.

nce 1858 Service Sin Since 8 800.223.1839 • www www.aph.org .aph.org

sshop.aph.org hop.aph.org

NEW PRODUCTS

LEARN-TO-PLAY PIANO Learn-to-Play Piano is a miniature piano designed for children ages 3 to 4 with fine motor disabilities to encourage visual, motor, and sensory skill development. This brightly painted upright piano by features 25 keys and two full octaves to give children a wide range of notes to play. It includes a songbook and a color-coded key chart. MELISSA AND DOUG Phone: 800-718-5365 Web: www.melissaanddoug.com Email: [email protected]

DADO CUBES Dado Cubes is a set of ten building blocks with slits in them designed for children ages 3 and up with learning disabilities to build cognition. Dado invites visual spatial development and problem solving as well as introduces the architectural principles of proportion, balance, structure, and color. Dado Cubes engages the user’s imagination as the slits on each cube are interlocked to create an unlimited number of three-

dimensional structures. Includes ten blocks scaled from 1 inch to 5 inches. FAT BRAIN TOYS 20516 Nicholas Circle Elkhorn, NE 68022 Phone: 1-800-590-5987 Fax: 402-779-3253 Web: www.fatbraintoys.com Email: [email protected]

RIVER SEVEN PIECE SET

BITTY BOTTOM CUSHION SEAT

River 7 Piece Set is a recreational game for individuals with low gross motor skills to improve their stability. Connect the pieces and balance on the path. The set is made of durable plastics with anti-slip rubber edges, and each piece is stackable for easy storage. The elements are easy to join and very flexible, so only the imagination sets limits to the course of the river. Includes six pieces of River Steps and one Connector Link. Can withstand weights up to 110 pounds.

The Bitty Bottom Cushion Seat is a soft seat designed to make smaller children, who need to wiggle, fidget, and move, focus and concentrate while they improve their balance, flexibility, and circulation. Inflate (with standard ball needle) to desired level. Use on the floor, chair, during mealtime or anytime. Eight inches in diameter.

ENABLEMART 865 Muirfield Drive Hanover Park, IL 60133 Phone: 888-640-1999 Fax: 800-235-1305 Web: www.enablemart.com

SCHOOL SPECIALTY PO Box 1579 Appleton, WI 54912 Phone: 888-388-3224 Web: www.schoolspecialty.com Email: [email protected]

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

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ABLEDATA

READ&WRITE FOR IPAD

Your Source for Assistive Technology Information

Read&Write for iPad is an application that helps individuals with dyslexia with typing and reading online. The app is an alternative keyboard and Safari toolbar to help with everyday tasks like emailing, working on documents, browsing the web, and using online forms. Features include word prediction and "Speak As I Type" technology. There is extra assistance from the spell checker, dictionary, picture dictionary, and other study tools to help with essays, assignments, or general reading and writing. If using a Safari browser, the user can touch on-screen text to hear it read out

loud with on-screen highlighting. Requires iOS 8.0 or later. TEXTHELP LTD. Web: http://apps.texthelp.com

LET’S TALK AUTISM ALL ABOUT ME AND OTHERS CONVERSATION STARTERS

Let’s Talk Autism – All About Me and Others Conversation Starters is a daily living and educational aid for children with autism spectrum disorder. It includes 48

conversation starters to help explore issues around autism for students with high functioning (Aspergers). This set takes a personcentered approach and helps different people including siblings, parents, caregivers, and teachers get to know how the child is best supported. Questions include "What can you do when you free scared or worried?" and "How do you know if someone is interested in what you are saying?" THE PLAY DOCTORS LIMITED Web: www.theplaydoctors.co.uk Email: [email protected]

WHAT IS THE MAIN IDEA? SUPER FUN DECK What is the Main Idea? Super Fun Deck is a game that helps individuals improve their reading comprehension skills. The story cards are designed to help students learn how to identify the main idea in a paragraph. Each card has a short narrative followed by three possible choices for the main idea of the story. Players listen to or read the story, and then decide which choice best represents the main idea of the story. Deck includes answer keys and extension activities for 126 cards in total. Students can self-check their answers with the Super Duper Secret Decoder. Cards measure 3 inches x 4 inches and come in a sturdy storage tin. Two levels included: level one blue cards, #1–60, are 3–4 sen-

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Archaeological Dig Uncovers the Remains of Disabled-institutionalus (Report dated: 2050) BY H. BARRY WALDMAN DDS, MPH, PHD, STEVEN P. PERLMAN DDS, MSCD, DHL (HON) AND RICK RADER, MD

ore than 35 years have passed since the investigative reporter Geraldo Rivera’s documentary on Willowbrook State School in New York City revealed the gruesome and neglected conditions in which individuals with intellectual and physical disabilities lived. Only recently has an archeological dig at the site located the remains of one of the inhabitants, Disabled-institutionalus (so named for children and adults with intellectual and physical disabilities who lived in large state facilities). In the 1840s, activist Dorothea Dix lobbied for better living conditions for individuals with varied mental conditions after witnessing the dangerous and unhealthy conditions in which Disabledjailus (individuals with intellectual and physical disabilities who were housed in jails). Over a 40-year period, Dix successfully persuaded the U.S. government to fund the building of 32 state hospitals for the care of these patients. By the mid-1950s, a drive for deinstitutionalization and outpatient treatment for people with disabilities began in many countries, facilitated by the development of a variety of antipsychotic drugs. Deinstitutionalization efforts reflected a largely international movement to reform the “asylum-based” mental health care system and move toward community delivery care. This movement was based on the belief that these patients would have a higher quality of life if assimilated and treated in their communities rather than in large, undifferentiated, and isolated mental hospitals.

M

The finding of what may be the last remains of Disabled-institutionalus initiated a great deal of interest among those of us working today with Disabled-integratus (individuals with disabilities who are integrated and a true component of our mid 21st century society). However, it is with total disbelief that we ponder the circumstances in which Disabled-jailus and Disabled-institutionalus individuals existed for years and even decades.

THE PAST In the United States in 1967, there were more than a quarter of a million Disabled-institionalus individuals with intellectual and developmental disabilities (ID/DD) in state institutions (195,650 persons in state institutions for individuals with ID/DD and almost 34,000 persons housed in psychiatric institutions).1 Decades later, changing social policies, legislation for people with disabilities and class-action legal decisions, which delineated the rights of individuals with intellectual disabilities, have led to deinstitutionalizing (i.e. “mainstreaming,” establishment of community oriented group residences and enhanced personal family residential settings) and closure of many state run large facilities. In 1977, children through age 21 years represented 35.8 percent of the 151,100 individuals in large state institutions (with more than 16 residents). By 2010, children through age 21 years represented 4.2 percent of the 31,100 individuals in these facilities; 62.5 percent

AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE AND DENTISTRY The American Academy of Developmental Medicine and Dentistry (AADMD) was organized in 2002 to provide a forum for healthcare professionals who provide clinical care to people with neurodevelopmental disorders and intellectual disabilities (ND/ID). The mission of the organization is to improve the quality and assure the parity of healthcare for individuals with neurodevelopmental disorders and intellectual disabilities throughout the lifespan. 14 September 2017 • EP Magazine | EXCEPTIONAL PARENT

UNEARTHING THE TRUTH: Deinstitutionalization efforts reflected a move toward community delivery care. This movement was based on the belief that these patients would have a higher quality of life if assimilated and treated in their communities rather than in large, undifferentiated, and isolated mental hospitals. of whom were males. 2 (see Table 1) In 2011, the average daily population of large state facilities was an estimated 29,800. Forty-five states operated an estimated 2,426 of residential housing for people with ID/DD. This decline in population after 1975 is attributed to the passage of P.L. 94-142-The Right to Education for All Handicapped Children Act, now known as IDEA. Once families had a place for their children to go during the day, the demand for institutional placement dropped precipitously.

Table 1. Percent of residents of large state ID/DD facilities by age, selected years between June 30, 1977 and June 30, 2010 2

Total number 0-21 yrs 22-39 yrs 40-62 yrs 63+ yrs

1977 1987 1996 2008 2010 151,112 94,695 51,485 35,035 31,101 35.8% 12.7% 4.8% 4.6% 4.2% 41.3 54.1 38.1 22.6 18.8 19.2 27.3 48.9 60.9 61.9 3.7 6.0 8.2 11.9 15.1

By 2011, 11 jurisdictions had closed all state-operated residential facilities with 16 or more residents for people with ID/DD. (AK, DC, HI, ME, MI, MN, NH, NM, OR, VT, WV). In 2013 Oklahoma closed its last state operated institution. Only three states had 10 or more large state operated ID/DD facilities serving 16 or more residents (New York - 49; Ohio -10; and Texas -13). There were, however, almost 70,000 people in large private institutions some of which are Intermediate Care Facilities and some are licensed by their state under various other funding programs.2

Overall, between 1977 and 2011, the total number of people with ID/DD receiving residential services grew from almost 247,800 to 460,600 (an increase of 85.9%). There were important differences in the pattern of change depending on the setting size and whether the setting was state or non-state operated. The number of people living in settings of 16 people or more declined from almost 207,400 in 1977 to 55,100 in 2011. By contrast the number of people living in state or non-state settings of 1 to 6 people increased from 20,400 to 347,400.2 (See a previous review in EP Magazine for an extended review of these developments.3 ) As we delved into the archeological history of our predecessors’ work we noted a branch of the main Disabled-institutionalus assemblage, Disabled-backroomus (children and adults with disabilities who were “hidden” in backrooms of homes) as if they were guilty of some “repugnant crime.” It just seems irrational to us that parents (and their neighbors) would look upon these family members with disabilities as they were less qualified and therefore subjected to derision and deserving of ridicule.

THE PRESENT Yes, there was opposition to the total acceptance of Disabled-integratus. For example: • In the classroom – There were concerns that children with special needs would overwhelm the teaching time in mainstreamed classroom settings. • In playgrounds – Children with special needs were subject to more accidents, which in turn could affect other children. • In the workplace – Adults with disabilities would be unable to EXCEPTIONAL PARENT | EP Magazine • September 2017 15

function in competitive work settings and also are subject to accidents. While educational, playtime and work settings may require tailoring to the particular needs of the young and adults with special needs, experience has shown that this can be accomplished. It is not that long ago that most of us can remember when street curb crossings had no drops for those in wheelchairs; that enunciators were not used in elevators to help the blind to locate their floor; that cochlear implants were not available for the individuals with severe hearing limitations; and computer generated vocalization aids were unavailable. It is in the lifetime of many adults, when the president of the United States could not be seen in a wheelchair – it would have appeared that he was too weak to lead the country in the time of a world war. But times have changed. Individuals with disabilities appear in the movies, in our malls, take vacations to any and all locations by every means of conveyance, perform in athletic competitive events beyond the abilities of many individuals without disabilities, and function in any number of employment positions. In essence, we’ve learned by experience that individuals with disabilities can and do carry on their life up to the limit of their abilities.

However: • Generations of children will mature in school and play settings with their Disabled-integratus contemporaries, • Generations of adults will experience increased contact with Disabled-integratus children and adults in malls, restaurants, on vacations, work settings and view them in the movies, and, • Memories of the world of Disabled-jailus, Disabled-institutionalus, and Disabled-backroomus will fade from societal recollection — Disabled-integratus may advance to a new species, Capableintegratus! ABOUT THE AUTHORS: H. Barry Waldman, DDS, MPH, PhD - Distinguished Teaching Professor, Department of General Dentistry at Stony Brook University, NY; E-mail: [email protected] Steven P. Perlman, DDS, MScD, DHL (Hon) is Global Clinical Director, Special Olympics, Special Smiles and Clinical Professor of Pediatric Dentistry, The Boston University Goldman School of Dental Medicine. Rick Rader, MD is Editor in Chief of Exceptional Parent (EP) Magazine.

References

THE FUTURE Disabled-integratus is not an “endangered species.” Despite continuing advances in knowledge, preventive and service abilities, as well as increasing numbers of trained providers in the many components of medical and social services, the reality is that incalculable numbers of children and adults (particularly older adults in their 80s, 90s and beyond) will be confronted with developmental and acquired disabilities.

1. Anderson LI, Lakin C, Mangan TW, et al. State institutions: thirty years of depopulation and closure. Mental Retardation 1998;36:431-443. 2. Larson S, Salmi P, Smith D, et al. Residential services for persons with intellectual and developmental disabilities: status and trends through fiscal year 2011. Available from: http://rtc.umn.edu/risp/docs/risp2011.pdf Accessed June 28, 2016. 3. Waldman HB, Eidelman S, Compton K, Perlman SP. Residential settings for children and adults with ID/DD. EP Magazine, 2014;44(4):16-19.

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16 September 2017 • EP Magazine | EXCEPTIONAL PARENT

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ORGANIZATION SPOTLIGHT

AMERICA’S TOOTHFAIRY

National Children’s Oral Health Foundation BY JILL MALMGREN id you know that pediatric dental disease is the most common, chronic disease among children in the U.S.? More common even than asthma or diabetes? More than 40 percent of children experience tooth decay by the time they reach kindergarten, and the decay rate for children with special needs is even higher. Because tooth decay affects millions of children, it is easy to believe cavities are inevitable and just a normal part of childhood. After all, most of us have had at least one cavity throughout our lives. However, poor oral health can have devastating long-term consequences for children. In addition to affecting a child’s ability to speak and eat a healthy, balanced diet, severe tooth decay can lead to life-threatening infections, emergency surgery and even the loss of a young life. So, while teeth may not always get the attention they deserve, caring for them is vitally important for a child’s overall health and well-being, now and into adulthood.

D

FILLING THE GAP America’s ToothFairy: National Children’s Oral Health Foundation was founded in 2006 to address the children’s dental 18 September 2017 • EP Magazine | EXCEPTIONAL PARENT

health crisis in the U.S. As a resource provider, America’s ToothFairy increases access to oral health care by supporting non-profit clinics and community partners delivering education, prevention and treatment services for underserved children. While there are many non-profit dental clinics providing free or lowcost care for children in need throughout the country, they often lack As a resource provider, America’s ToothFairy: National Children’s Oral the necessary funding, Health Foundation (NCOHF) increases dental products, equipaccess to oral health care by ment, and educational supporting non-profit clinics and materials to meet the community partners delivering demand for services. education, prevention and treatment America’s ToothFairy services for underserved children. Visit established the Dental www.AmericasToothFairy.org Clinic Resource Program to increase the ability of clinics to serve more children by providing financial grants, educational materials, donated dental products and equipment. Dental corporations have generously supported

PHOTOS PROVIDED BY AMERICA’S TOOTHFAIRY

this program with millions of dollars of donated products and equipment. Thanks to their support for this network of clinics, more than 896,000 children received free or low-cost oral health services last year. The America’s ToothFairy Smile Drive, a nationwide campaign to increase awareness of oral health and collect oral care products for children in need, engages hundreds of community volunteers each year. Since 2014, more than 1.3 million oral care products, including toothbrushes, toothpaste, floss, rinse, mouth guards and other items, have been collected and distributed through this annual effort. Permeating all America’s ToothFairy programming is an emphasis on expanding delivery of preventive education. America’s ToothFairy assists an array of youth-serving organizations to integrate an oral health emphasis into their ongoing programming. This assistance includes free educational materials, oral care products, training and technical assistance. By collaborating with Boys and Girls Clubs of America, HOSA: Future Health Professionals, Special Olympics, National Association of School Nurses and other organizations, large populations of underserved children are receiving oral health education. Distribution of free educational resources and other tools for community outreach allows individual volunteers, no matter their dental knowledge, to promote the important message of prevention in their communities. To date, America’s ToothFairy has distributed more than $17 million in resources to support improved oral health outcomes for children.

ABOUT CHILDHOOD TOOTH DECAY While significant strides have been made to address the children’s oral health crisis, one in five U.S. children have untreated tooth decay. Children with chronic dental pain often have difficulty eating, talking, sleeping and concentrating in school. Dental problems are a leading cause of school absenteeism, and children with poor oral health are three times more likely to miss school due to dental issues. Untreated tooth decay can cause severe pain, anxiety, poor overall health, low selfesteem, poor social development and low academic achievement. Though childhood tooth decay is largely preventable, many factors contribute to its pervasiveness. First, the separation

between dentistry and general medicine has demoted oral disease to a level of importance below many other medical conditions. Most parents make their child’s doctor appointments a priority yet do not know their child should visit a dentist by age one. Second, while mandatory in some

ADDRESSING HEALTH DISPARITIES For children with intellectual and developmental disabilities, the challenges can be even more significant. Oral conditions such as tooth grinding, gum disease and tooth anomalies are common among children with special needs and require proper treat-

ALL SMILES: A child undergoes a treatment at a Dental Clinic Resource Program member clinic; America’s ToothFairy’s efforts increase the ability of clinics to serve more children by providing financial grants, educational materials, donated dental products and equipment. states, most schools do not require oral health education. An assumption that “everyone knows what to do” to take care of their teeth is incorrect, and there remains a significant lack of awareness of the importance of oral health, its relationship to other medical conditions and its connection to overall health. Third, due to lack of financial resources, insufficient dental insurance or inability to find a nearby dental provider, preventive dental visits are often skipped or delayed. Once a child’s tooth decay becomes too rampant and painful to be ignored, there is no other choice but to access emergency care.

ment to correct and monitor. Limited motor skills, language limitations and sensory issues can make basic home care like brushing and flossing difficult. Restricted diets and medications can exacerbate existing oral health challenges. Locating a nearby dental provider willing to treat children with special needs is perhaps the most significant obstacle to overcome. Many dental offices do not have the specialized training or accessibility modifications required to treat children with intellectual or developmental disabilities. For children who do have access to a dentist, a dental visit can be intimidating. Being

“A number of non-profit clinics and university programs are beginning to train their staff and students in effective, compassionate techniques for treating children with special needs.”

EXCEPTIONAL PARENT | EP Magazine • September 2017 19

enclosed in a small room with large, loud equipment and unfamiliar people wearing masks and gloves can be a scary experience for many children (and some adults!). For that reason alone, dental appointments are often delayed. Sadly, it is no surprise that dental care is the most common unmet health care need for children with special needs.

EXPANDING CARE AND SUPPORT America’s ToothFairy supports programs that increase access to care for children with special needs. Raising awareness of clinics with special needs capabilities, expanding school-based screening programs to include special education programs and donating equipment to better serve children with special needs are just a few of the ways America’s ToothFairy is working to address the gap in care.

with special needs. Now, these children who had not been served in the past, are receiving regular checkups, services and referrals for more extensive care. With support from America’s ToothFairy, the dental school of a Boston University developed a program that provides dental education and oral care products to children on the autism spectrum. This innovative program utilizes America’s ToothFairy educational materials and art programming to introduce oral health concepts. Grant funds also provided the students electric toothbrushes, helping improve their motivation and ability to brush their teeth at home. In Arkansas, America’s ToothFairy supports Special Olympics with educational materials, oral care products and other resources for their “pop-up” clinics held throughout the state. These clinics provide vital dental screenings and dental care for the athletes. During the summer months, America’s ToothFairy oral health educators will provide adapted education for athletes and caregivers at Arkansas Special Olympics Sports Camps. By supporting these programs and others, America’s ToothFairy aims to reduce dental health disparities for children with intellectual and developmental disabilities. The good news is that a number of non-profit clinics and university programs are beginning to train their staff and students in effective, compassionate techniques for treating children with special needs. Their efforts are making a life-changing difference for parents whose children have struggled through dental appointments in the past. One mother was brought to tears when she witnessed a group of California dental students caring for her 12-year-old son with autism. The students collaborate with America’s ToothFairy to deliver oral health education and preventive services for children with special needs in their community. At first, the woman’s son was reluctant to sit in the dental chair and began rocking and showing signs of irritability and uncertainty. The students calmly reassured him, covering him with a fur blanket and giving him a ball of play dough to mold in his hand throughout his visit. “This was the first time he was able to sit for a dental appointment without sedation,” his mom said, amazed at the difference their simple techniques had made. “I can’t thank you enough!”

LOOKING AHEAD While there is much more work to do to combat childhood tooth decay, it is critically important that dental programs also emphasize prevention. America’s ToothFairy is working with clinics that have reported significant reductions in the OPEN WIDE: Author Jill Malmgren volunteers at Special Olympics incidence of tooth decay among the children they serve, on Minnesota; America’s ToothFairy supports Special Olympics with average 25-27%. Children with good oral health reduce their educational materials, oral care products and other resources for their risk for dental-related health complications including “pop-up” clinics held throughout several states. headaches, infections, jaw pain and insomnia and experiFor example, in Minnesota, America’s ToothFairy supports a den- ence better overall health. By combining oral health education, pretal program that has provided care and education to underserved ventive services, treatment and distribution of oral care products to children across the state for nearly 100 years. Recognizing that the promote effective home care, children can build positive habits for communities they serve have too few dentists and difficulty access- a lifetime of good oral health. And that’s something even the ing transportation, they provide dental services in several school ToothFairy can smile about.• districts. Children receive oral health education, screenings and preventive services on the school’s campus during school hours, ABOUT THE AUTHOR: eliminating a major barrier to care. A grant from America’s Jill Malmgren is the Executive Director of America’s ToothFairy: National ToothFairy allowed the clinic to expand this program to children Children’s Oral Health Foundation (NCOHF). 20 September 2017 • EP Magazine | EXCEPTIONAL PARENT

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It can be helpful to educate your child or teen about the ways in which social media use affects them. By increasing their mental health literacy, you can provide your teen with tools to improve their mental health. 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. PHOTOS PROVIDED BY AMELIA MUMFORD

EXCEPTIONAL PARENT | EP Magazine • September 2017 23

Modern day parents often worry about social media use amongst their teens. Unsurprisingly, recent surveys show 92 percent of teens report using the internet daily, while 24 percent use it “almost constantly.” As teens increasingly use social media throughout their daily lives, it is important to be aware of the possible effects that this usage can have on mental health. owadays, almost everybody seems to be using social media. Since the arrival of popular sites like Facebook, Instagram and Twitter, social media usage has increased rapidly. Just in the past decade, the percentage of Americans who use social media has increased dramatically, from just 5 percent in 2005 to 69 percent today. Social media can be a fun way to bring us closer to our peers, but anyone who has used Facebook can tell you that heavy social media usage can sometimes take its toll on your mental health. The ability to keep up with the lives of friends, family, and even people far outside our social circles makes it easier to compare ourselves and fall prey to the “fear of missing out”. In fact, social media may have a number of effects on our mental health. Studies show that social media can increase anxiety, depression, and feelings of loneliness and isolation. Significant time spent on social media can lead to lack of sleep, which can strongly increase your risk for developing a mental health disorder. In particular, sites that place a heavy value on images, such as Instagram, can often exacerbate feelings of inadequacy and negative self-image. These image-focused sites tend to be most popular among teenagers.

N

behaviors. This awareness can help them assess whether a site is helping them feel closer to peers or if is making them feel worse. Our social media feeds bombard us with other peoples’ thoughts, lives, and ideas. Understanding when, and how, to take breaks from potentially distressing content can also benefit teens struggling with heavy social media use. Dr. Durlofsky says that although social media is useful for maintaining relationships, “it interferes with creating that natural distance” that people often need during a conflict. Whether it is a disagreement between friends or a breakup, social media can disrupt the natural healing process by providing a visual reminder of the conflict. Make sure your teen is aware of this issue by talking to them about the value

SOCIAL MEDIA: A CHALLENGE TO TEEN MENTAL HEALTH? As any parent knows, adolescence can be a time of dramatic physical, emotional, and social changes for many young adults. It can be hard for teens to navigate their emotional well-being, especially as they find themselves in new and uncertain situations. For some teens, these challenges can bring about the onset of mental health disorders. In fact, roughly half of people with mental health disorders first present with symptoms during childhood or adolescence. Today, more than three quarters of American teens use Snapchat and Instagram to communicate. At this vulnerable time, heavy social media use poses a potential risk to their mental health. It can be helpful to educate your child or teen about the ways in which social media use affects them. By increasing their mental health literacy, you can provide your teen with tools to improve their mental health.

REMAINING AWARE AND RESPONSIBLE Mental health literacy includes the ability to recognize signs, symptoms, and risk factors associated with mental illness. This is paired with the corresponding ability to engage in help-seeking and prevention behaviors. Dr. Paula Durlofsky, a family psychologist from Bryn Mawr, Pennsylvania, says that she encourages her patients to remain mindful of why they are using social media. “The first step is to ask yourself why. Why am I using social media? What do I hope to gain?” By asking these questions, teens can gain an understanding of their motivations behind certain social media 24 September 2017 • EP Magazine | EXCEPTIONAL PARENT

of taking breaks, especially during a stressful or upsetting time. Encouraging healthy coping mechanisms to deal with this stress, such as taking a walk or talking about the issue one-on-one, can help your teen recognize when it’s time to take a break.

A SENSE OF COMMUNITY AND SUPPORT At the same time, in some cases, social media can provide muchneeded support. This is especially true for teens who struggle to gain acceptance from their peers. Dr. Jonathan Singer, Licensed Clinical Social Worker and Associate Professor at the Loyola University Chicago School of Social Work, points out that social media offers a network of support for adolescents, especially in high school, who feel isolated from others. “Today, people can go online and find communities of support – not just from other kids, but also adults who can provide a sense of mentoring about how to navigate their lives.” Social media can help provide an accepting community for teens who have interests that differ from what is accepted as “cool.” This concept applies to mental health disorders, as well. Through the use of online forums like Facebook groups, teens can find support groups for people who struggle with depression, anxiety, or any other mental health disorder. These support groups can be a

great resource for teens who are learning to cope with their feelings. Although she recommends seeking professional help in person, Dr. Durlofsky says these groups can be a great starting point, especially for teens who are not yet ready to talk to someone face-to-face about their concerns. Resources such as the National Suicide Prevention Lifeline Facebook page (www.facebook.com/800273talk ) can be an important educational tool for supporting teens who are looking for help.

SO, WHAT CAN YOU DO? Educating your teen about social media use: If your teen is a heavy social media user, it can be helpful to talk to them about potential mental health effects. It is important to remember that many teens may not see anything wrong with the way they use social media. Dr. Singer advises being sensitive your teen’s point of view. “Many kids aren’t going to see themselves as having a problem,” he says. “It’s all

inherently relational.” If your teen is having understand what they are going through. In an emotional conflict, they may view their this way, you can both better understand friends or their stress as the problem, their motivations behind using social media, and the ways that it may be exacerinstead of social media. bating mental health Try to approach concerns. the subject with an Exploring the open mind by askworld of social ing your child what media – together: they view as the For parents of problem. Once this Screenwise: Helping Kids Thrive younger children, a conversation is (and Survive) in their Digital World good way to learn open, you can ask about social media is them how they through the use of a think social media joint account. Dr. may be affecting Singer recommends their mental health. Commonsensemedia.org creating a family Ask them if social account for a pet that media ever makes them feel bad, or if their technology habits can allow you to navigate the world of ever affect their ability to sleep. If your teen Instagram or Pinterest together. This is a struggles with a specific mental health dis- great way for families to address potential order, you can suggest that they search for effects of social media as they come up. For support groups that might help them example, if your child is upset about not getting enough likes on a photo, you can ask your child why they feel this way and start a discussion about social media and self esteem. “Having this family account can be a great way of introducing kids to the internet, making sure that families are doing something together, and setting the ground rules,” says Dr. Singer. This activity allows both parent and child to learn about social media while creating a space for mental health awareness and education. In today’s world of social media, the constant viewing of everyone else’s highlight reels can take a toll on our mental health. And as the internet increasingly becomes a place for teens to learn, chat, and meet friends, it is important to teach your teenager about tools they can use to identify and improve their mental health. By increasing your child’s mental health literacy, you can ensure that they learn to use social media in a healthy way.•

RESOURCES

References Based on Interviews with: Jonathan B. Singer, Ph.D., LCSW, Associate Professor, Loyola University Chicago School of Social Work Founder and Host, Social Work Podcast, Executive Board Members, American Association of Suicidology Paula Durlofsky, Ph.D., Educational Psychology, M.A., Counseling Psychology, Advanced Certification in PsychoanalyticalPsychotherapy, Psychoanalytic Center of PA, Licensed Clinical Psychologist, Bryn Mawr, PA

ABOUT THE AUTHOR: Cecelia Tamburro is a rising senior at Brown University, where she studies biology. She is interested in genetics and health education.

EXCEPTIONAL PARENT | EP Magazine • September 2017 25

How Charter Schools &Vouchers Affect Special Education

Families should carefully weigh the pros and cons of charter schools and vouchers, and speak with their Parent Training and Information Center about their state laws, regulations, and policies regarding special education and charters or vouchers, before making a decision.

BY MARIA DOCHERTY AND LAUREN AGORATUS, M.A.

BACK TO IT: Lucas Quitoni is ready for his first day of school. Like many parents raising children with disabilities, his are asking questions about how charter schools and vouchers impact special education.

26 September 2017 • EP Magazine | EXCEPTIONAL PARENT

PHOTO PROVIDED BY THE NATIONAL DOWN SYNDROME SOCIETY

With the increased focus in the United States on charter schools and the use of vouchers to support student attendance at private schools, more and more parents of students with disabilities are asking questions about how charter schools and vouchers impact special education. This article provides answers to some of those questions!

CharterSchools Charter schools are public schools that are established under terms of a local or national charter. Most are founded by professionals. They must operate by their “charter,” which establishes their purpose, etc., as well as federal education laws such as the Individuals with Disabilities Education Act (IDEA) and relevant state laws. Many charter schools use a lottery system to accept applicants. A quick look at the data demonstrates that students with disabilities are underrepresented in charter schools, and students with significant disabilities are even more under-represented. A 2012 report from the Government Accounting Office found that charter schools enrolled a lower percentage of students with disabilities than traditional public schools (http://www.gao.gov/assets/600/591435.pdf). That report also noted that “[a]necdotal accounts also suggest that some charter schools may be discouraging students with disabilities from enrolling and denying admission to students with more severe disabilities because services are too costly.” In some states, charter schools have been formed to serve only students with disabilities, resulting in their increased segregation and no opportunities for interaction with their non-disabled peers. A study from the Center for Research on Education Outcomes on charter schools in 15 states and the District of Columbia examined the overall performance of charter schools across multiple subject areas. They found that while some charter schools do better than traditional public schools, the majority do the same or worse. Also, 37% of charter schools performed significantly worse in terms of reading and math than traditional public schools, compared to only 17% that performed significantly better than traditional public schools. The Center for Civil Rights Remedies has conducted a study of charter school suspension practices and found that charter schools suspend students with disabilities at two to three times the rate of nondisabled students, and in fact have a higher suspension rate than traditional public schools. It is important to know that state laws regarding charter schools vary. In 16 states they are considered Local Education Agencies (LEAs) (local districts) and are responsible for full implementation of IDEA, including providing a full continuum of services and placements. In 11 states, charters are considered public schools within LEAs, and it is the local district that is responsible for IDEA compli-

ance. In the rest of the states, charter schools can be either their own district or an option within a larger district. Families of children with disabilities can find out about laws regarding charter schools in their state by contacting their Parent Training and Information Center (see Resources.) Some things families of students with disabilities should remember about charter schools: • They can’t discriminate based on disability in application, selection, services, or exclusion after acceptance. • Applications should not ask if the prospective student has a disability or needs a particular special education service. • Students with disabilities, once accepted, must be provided with a free appropriate public education in the least restrictive environment. • A charter school may not unilaterally limit the services it provides a particular student with a disability. • A charter school may not counsel out, i.e., try to convince a student (or parents) that the student should not attend (or continue to attend) the school because the student has a disability. Check out “Know Your Rights: The Rights of Students with Disabilities in Charter Schools” from the US Department of Education at https://sites.ed.gov/idea/files/dcl-factsheet-201612-504-charter-school.pdf, which clarifies that students with disabilities in public charter schools and their families retain all of their rights both under IDEA and under Section 504 of the Vocational Rehabilitation Act.

Vouchers Voucher programs give families a certain amount of public money to help cover private school tuition. Sometimes called a “scholarship,” the amount of the voucher varies state by state and sometimes by program, grade, or disability category in programs that are limited to students with disabilities. Currently, there are 16 states and the District of Columbia that offer vouchers; each has its own eligibility criteria, but they are usually limited to lower income students, students in low-performing schools, or students with disabilities. In fact, there are 10 states that have voucher programs specifically aimed at students with disabilities. What most parents of children with disabilities do not know is that when they accept these vouchers, they are giving up their child’s rights under IDEA to a free, appropriate public education in

CHARTER SCHOOLS AND SPECIAL EDUCATION : U.S. DEPARTMENT OF EDUCATION GUIDANCE: 504 Plans • Students have the same rights as other public school students with disabilities • Nondiscrimination in recruitment, application, and admission • Cannot ask if the student has a disability • Right to FAPE (Free Appropriate Public School Education

IEPs under IDEA • Retain IDEA rights •May not limit services • Consideration of LRE (Least Restrictive Environment) • Follow IDEA discipline procedures Know Your Rights! https://sites.ed.gov/idea/files/dcl-factsheet-201612-504-charter-school.pdf

EXCEPTIONAL PARENT | EP Magazine • September 2017 27

the least restrictive environment. There is no guarantee that the voucher will cover the entire cost of tuition or related services such as speech, occupational or physical therapy, counseling, mobility training, transportation, etc. In addition, the private schools that accept the vouchers generally do not have to follow the same policies as public schools. While they cannot discriminate against students with disabilities, they can establish their own admission, discipline, tracking, and other policies. They are not required to offer any services beyond those that can be provided All of the research that with “minor adjust- has been reported in ments” to their educa- the last few years on tional program. So they voucher programs has can even deny admission outright if a student’s found that students needs are considered too attending these prosignificant. And even if grams actually fare they do admit a student worse academically with disabilities, they are not required to provide compared to their needed academic, “closely matched behavioral, or other edu- peers” attending cational interventions public school. and can refuse to continue services at any time. Unfortunately, the forms that parents are asked to sign when they accept a voucher usually do not inform them that they are waiving their child’s right to a free, appropriate public education including the procedural safeguards that help parents have a say in their child’s education. Critics of vouchers are also concerned that vouchers increase socioeconomic and racial segregation.1 Perhaps most important, all of the research that has been reported in the last few years on voucher programs has found that students attending these programs actually fare worse academically compared to their “closely matched peers” attending public school. (See www.nytimes.com/2017/02/23/upshot/dismal-results-from-vouchers-surprise-researchers-as-

Another type of “voucher” program is used in some districts when the district says that it cannot provide all the related services on a student’s Individualized Education Program (IEP). For example, in New York City, parents were given vouchers for related services that were not being provided by their child’s school. Unfortunately, this did not result in students actually receiving the related services. In many instances, parents could not find providers, and even when they identified potential providers, they would not accept the vouchers. In other situations, parents did not have transportation or child care for their other children, so they could not get their child to the service provider. And apparently, no one noticed that children were not able to access related services by using the vouchers, because more than half the vouchers went unused for over a year. It’s not clear why the school system felt that parents would be able to find a provider when the school and district could not do so. You can read more about this at www.nytimes.com/2017/07/11/nyregion/special-education-services-vouchers.html?mcubz=3.

Whatdoesthisallmean? Families of children with disabilities are hearing about charters and vouchers in the news and in their communities, and may be thinking about whether or not these options are appropriate for their children with disabilities. Families should carefully weigh the pros and cons of charter schools and vouchers, and speak with their Parent Training and Information Center about their state laws, regulations, and policies regarding special education and charters or vouchers, before making a decision.

References 1. https://tcf.org/content/commentary/private-school-vouchers-exacerbate-school-segregation/

ABOUT THE AUTHORS: Maria Docherty is the Director of Technical Assistance for the Statewide Parent Advocacy Network (SPAN.) Lauren Agoratus, M.A. is the parent of a child with multiple disabilities who serves as the Coordinator for Family Voices-NJ and as the central/southern coordinator in her state’s Family-to-Family Health Information Center, both housed at SPAN, found at www.spanadvocacy.org

devos-era-begins.html?mcubz=3 ).

CHOOSING WISELY : RESOURCES FOR CHARTER SCHOOLS AND VOUCHERS

NAtIoNAl cENtEr for SPEcIAl EDucAtIoN AND chArtEr SchoolS

School VouchErS: WhAt You NEED to KNoW www.understood.org/en/school-learning/your-childs-rights/basics-about-childs-rights/school-vouchers-what-you-need-to-know

www.parentcenterhub.org/charters

(Video-expert

talk)

www.understood.org/en/community-events/experts-live-chats-webinars/2017/august/01/school-vouchers-what-you-need-to-know

PArENt trAININg & INformAtIoN cENtErS School VouchErS: WhAt You NEED to KNoW

www.parentcenterhub.org/find-your-center www.parentcenterhub.org/charters

https://c.ymcdn.com/sites/copaa.site-ym.com/resource/resmgr/2016_Conference/COPAA_Voucher_paper_final_R6.pdf

(Facts on Charter Schools and Students with Disabilities)

28 September 2017 • EP Magazine | EXCEPTIONAL PARENT

(by Council of Parent Advocates & Attorneys)

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COMPASSIONATE EXCEPTIONAL PARENT | EP Magazine • September 2017 29

PRE-SCHOOL

ELEMENTARY SCHOOL

TRANSITIONING FROM PRE-SCHOOL TO ELEMENTARY SCHOOL, AND BEYOND:

STUDENTS WITH SPECIAL EDUCATION SERVICES BY DIANE WISCARSON, WISCARSON LAW s a parent of a child with special needs, you may be particularly anxious about sending your child to elementary school. After all, you want to make sure that your incoming kindergartner gets the full benefit of a public school education, and has a positive experience in the process. Prior to your differently-abled child reaching kindergarten age, they will have likely been getting services through your local Education Service District (ESD), which could have started shortly after your child’s birth. If so, your Service Coordinator helped figure out a plan for your child’s services, focusing on the needs of the family to enhance the development of your child. As a part of the help provided for your child, your Service Coordinator helps develop an Individual Family Service Plan (IFSP). An IFSP is a written document based on an in-depth assessment of your child’s needs. It includes a child’s current developmental levels, desired outcomes for the child and family, and a plan for how to achieve those outcomes. IFSP services are provided at home, or in other “natural settings,” such as a child care facilities, preschools, or other community settings in which children without disabilities would frequent. The IFSP is largely family driven. The family determines priorities, needs, and wants for the child. Parents often describe IFSP meetings as collaborative, congenial, and usually “warm and fuzzy.” There is not often much conflict in deciding which servic-

A

30 September 2017 • EP Magazine | EXCEPTIONAL PARENT

es a child and the family need to enhance the child’s development. Those IFSP services will continue until a child starts kindergarten, with changes along the way, as a particular child and family need. In the spring before a child is set to begin kindergarten in the upcoming fall, there should be a transition meeting. This meeting is really a hand-off from the IFSP providers, to the school-age providers. Parents should attend the transition meeting and be prepared to discuss their child’s educational needs. At the transition meeting, parents are told that the IFSP will expire before the child starts kindergarten, and a new document, an Individualized Education Program (IEP) will be developed instead. An IEP is for students who will receive special education services, typically at the neighborhood school. The IEP outlines the child’s present level of educational and functional performance, then sets concrete goals to be measured and achieved via special education services, over the course of a calendar year. The IEP must be reviewed at least annually, and a child can have an IEP until they graduate from high school with a standard diploma or age-out of services after turning 21. The biggest difference between an IFSP and an IEP is the noticeable removal of the word “family” in the IEP. When a child starts kindergarten, the focus shifts from the family and the child’s development, to the educational needs of the child while

HIGH SCHOOL

at school. Parents are often dismayed at the change of focus, and the lessened emphasis on the family. With any transition, whether from pre-school age to elementary school, from elementary to middle school, from middle to high school, or even from high school to a district transition program, the importance of being prepared and involved cannot be overstated. A transition meeting should be held any time a child will transition from one school level to the next. Start preparing for a transition meeting by making sure a meeting is getting scheduled the spring before your child’s transition.

“At the transition meeting, ask questions about ANYTHING you do not understand or that does not make sense, whether on the IEP or a discussion occurring during the meeting.” Before any transition meeting, make sure the right people are invited and are actually attending. For example, for a preschooler, make certain that the IFSP “Service Coordinator” and someone from the elementary school, usually a case manager, will each be attending. Review your child’s IFSP carefully to have a full understanding of the services your child currently receives. This is the meeting at which the IFSP and developmental progress will be reviewed, and then an IEP written. The IEP will be in effect the day your child starts kindergarten. The IEP will define services at school, and except in rare circumstances, no services will be provided at the child’s home, or in other “natural environments.” All IEP services will be provided at school, and the parent’s participation in those services is mostly nonexistent. This is sometimes a difficult change for parents

AND BETOND

whose ideas for their child and education suddenly have much less influence at the meeting table than during the IFSP process. In advance of the meeting, ask for a draft IEP and copies of any evaluations or observations of your child so you can review them and be prepared with questions or concerns. At the meeting, ask questions about anything you do not understand or that does not make sense, whether on the IEP or a discussion occurring during the meeting. Keep asking questions until you are satisfied. Don’t fall into the trap of, “We don’t do that at elementary school,” or “middle school,” or “high school.” If your child has a need that results from a disability and impacts their education, that need must be addressed on the IEP. ost practical piece of advice? Take your best smile, patience, and yes, water and fruit, or another edible treat, to any transition meeting. Except for the parents of each particular child, all of the attendees at any transition meeting will attend many transition meetings each spring. After the first 10 or 20, they are tired, and all of the kids’ individual information starts to run together in their minds, despite best efforts. It is always more successful to attend a meeting where people are polite, patient, well-hydrated, and can focus on the immediate task at hand – your child’s educational needs and success! •

M

Author’s Note: This article originally appeared on www.PDXParent.com ABOUT THE AUTHOR: Diane Wiscarson worked her way through the special education system on behalf of her son, and in so doing, found her passion for helping other families navigate special education and the law. Since graduating from law school in 1996, and founding Wiscarson Law, she has helped thousands of Oregon and Washington families obtain appropriate services and placements for their special needs children in public schools and education service districts in both states. For more information call 503.727.0202, or go to www.wiscarsonlaw.com

EXCEPTIONAL PARENT | EP Magazine • September 2017 31

This article will focus on due process hearings, which are the most costly form of dispute resolution in terms of time, financial resources, and impact on relationships between parents and school personnel.

Where Do We Go from Here? MAKING INFORMED DECISIONS ABOUT SPECIAL EDUCATION DISPUTE RESOLUTION BY WILLIAM BLACKWELL, ED.D.

lanning special education services is a collaborative process involving parents, children, and school personnel. While the majority of individualized education programs (IEPs) are developed collaboratively, there are situations in which disagreements arise that are not easily resolved. Parents are sometimes left asking themselves, “Where do we go

P

September • EP Magazine | EXCEPTIONAL 32 July 2017 •2017 EP Magazine | EXCEPTIONAL PARENTPARENT

from here?” following an unsuccessful attempt at resolving differences with school personnel. Our federal special education law, the Individuals with Disabilities Education Improvement Act (IDEA), provides parents and schools with options for resolving these disagreements. However, these options can be costly and often increase the levels of stress experienced by parents.

his article will provide parents with important issues to consider when navigating disagreements with schools over special education services. It is intended to assist parents in making informed decisions regarding special education dispute resolution. Specifically, the article will focus on due process hearings, which are the most costly form of dispute resolution in terms of time, financial resources, and impact on relationships between parents and school personnel. It will describe the dispute resolution procedures outlined in federal law and highlight research on the outcomes of special education due process hearings. The article will then provide parents with four options for engaging in less costly and adversarial dispute resolution. Finally, it will list four key considerations that parents should make if they decide to go forward with a due process hearing.

T

come to a mutually agreeable decision, a legally binding written document is developed that details the results of the mediation. States are required to maintain a list of qualified mediators and to provide these services at no cost to parents. When mediation is not successful, the next option is called an impartial due process hearing. These hearings are formal processes that often involve attorneys. Due process hearings include review of evidence, written and oral testimony, cross-examination of witnesses, and a final decision ordered by a hearing officer. Researchers Lynn Daggett and Tracy Mueller have estimated that the average cost of a due process hearing is over $10,000. Parents may be responsible for many of these costs, particularly if they use an attorney and do not win most of the issues decided in the hearing.

RESEARCH ON DUE PROCESS HEARINGS SPECIAL EDUCATION DISPUTE RESOLUTION During special education planning meetings, there are instances in which parents will disagree with the school over parts of their child’s IEP. When this happens, the disagreements are typically resolved at the local level. The IEP team may decide to meet again in a few days in order to allow both sides to consider their options and develop a mutually agreeable solution. The parent may choose to enlist the help of a special education advocate to provide recommendations and communicate with school personnel. Or the school district may assign an administrator to help resolve the conflict by working with both parents and teachers to determine the best for the child. However, there are instances in which the conflict cannot be resolved locally. Federal special education law provides two options for navigating these types of disputes. The first option is mediation. During mediation, the state education agency assigns an impartial mediator to meet with parents and school personnel, listen to the issues, and make recommendations for a solution to the disagreement. If both sides

When I first experienced a due process hearing, I was taken aback by the atmosphere. It felt like I was in a legal drama on television. The school district had three attorneys, the parents had their attorney, and witnesses were called to testify and were even cross-examined by the lawyers. The final decision was read and then made available in a 40-page document that included every detail of the case. Throughout the process, I had the impression that the school district had a distinct advantage. Their attorneys were experienced and the school personnel involved in the hearing had been through this process in the past. On the other hand, the parents seemed overwhelmed at times and were clearly experiencing high levels of stress and anxiety. The end result was not favorable for the parents or their child. Drawing from this experience, I researched the outcomes of due process hearings in Massachusetts (where I lived at the time) over an eight-year period from 2006-2013. In the 258 hearing decisions that I analyzed, the school district won over 55% and parents won only 21% of the hearings. The other 24% of hearings result-

“Parents win a higher percentage of due process hearings when they are represented by an attorney. However, legal representation often comes at a steep financial cost.”

ed in a “mixed decision” that involved both sides winning at least some portion of the hearing. Based on these results, it appears that school districts benefit from their expertise and experience when participating in due process hearings. Even more striking were the results related to attorney representation. School districts used attorneys in 100% of the 258 due process hearings. On the other hand, parents only used attorneys in 40% of the hearings. They used a special education advocate in 15% of the hearings and represented themselves in the other 45% of the hearings. This importance of attorney representation was evident when I analyzed the results by type of representation. Parents who used an attorney won 31% of their hearings. Parents who used a special education advocate won 21% of their hearings. The parents who represented themselves were only able to prevail in 10% of their hearings. It is clear from these results that being able to access legal representation is a major factor in the results of special education due process.

OPTIONS FOR ENGAGING IN LESS COSTLY AND ADVERSARIAL DISPUTE RESOLUTION Although it was not the intention of our federal special education law, the due process hearing option does not work in favor of parents who are in conflict with their child’s school. And even though school districts win the majority of the decisions, both administrators and teachers acknowledge that due process is a difficult, costly, and undesirable method for resolving disagreements over special education services. Here are four options that parents can use to engage in less costly and adversarial dispute resolution. 1. Enlist the support of a special education advocate: Special education advocates are experienced, trained individuals with direct knowledge and expertise in both special education and parent advocacy. Special education disputes can be stressful and emotionally draining on parents. Advocates can help relieve these pressures by communicating with school personnel, organizing documentation, asking questions at meetings, and recommending possible solutions to the conflicts. School districts often have parent resource liaisons who can recommend advocates in your area. Another option is to contact special educa-

EXCEPTIONAL PARENT | EP Magazine • September 2017 33

A FRIEND INDEED: Due process hearings are stressful, drawn out proceedings that take a toll on parents and their child. A skilled advocate will provide coaching, encouragement, and support throughout the process. tion faculty at your nearest university to see if they engage in advocacy work. Many advocates work on a volunteer or low-cost basis. 2. Consult with your regional Parent Training and Information Center: The U.S. Department of Education funds these parent support centers throughout the country. Their mission is to provide consultation, training, and support to parents of children with disabilities. Many of the centers offer free consultation and can direct parents to local resources such as special education advocates and parent support groups. Parents can find their Parent Training and Information Center by visiting the Center for Parent Information and Resources website at www.parentcenterhub.org/find-your-center/. 3. Request a facilitated IEP meeting: The facilitated IEP meeting is growing in popularity and effectiveness as an option for resolving special education disputes. In most IEP meetings, the special education case manager organizes the agenda and manages the discussion. In situations in which there is conflict, this approach often increases the level of disagreement. Facilitated IEP meetings are run by an independent, trained facilitator who does not work for either the school or the parents. The facilitator is responsible for ensuring that both sides can express their opinions and for helping them resolve their differences. Many states now offer IEP facilitators at no costs to parents and schools. Parents may contact their state education agency to see if these services are available. 4. Participate in special education mediation: As mentioned previously, federal special education law requires states to provide free, impartial mediators to help parents and school personnel resolve disagreements. While facilitated IEP meetings focus on the entire planning process, mediation targets the main areas of disagreement. A trained mediator meets with both sides to understand the issues and make recommendations. Typically, mediators help parents and school personnel find a common ground. Any agreement reached during mediation is legally binding. States are 34 September 2017 • EP Magazine | EXCEPTIONAL PARENT

required to maintain a list of qualified mediators and to provide these services at no cost to parents. Both parents and the school district can contact the state education agency to request mediation services.

KEY CONSIDERATIONS IF GOING FORWARD WITH A DUE PROCESS HEARING If the strategies described above are not effective, an impartial due process hearing is the next option for resolving disagreements about special education services. This process will be costly in terms of money, time, stress, and relationships. However, it is sometimes necessary in order to ensure that a child receives quality special education services as required by federal law. Here are four key considerations that parents should make if they decide to go forward with a due process hearing. 1. Organize all documentation: There is a considerable “paper trail” that has developed by the time a disagreement has reached the point of going to a due process hearing. This “paper trail” is an essential part of the hearing. Documentation, notes, communication logs, and other forms of written information will be used as evidence at the hearing. The documentation will also be made available to both sides in the dispute, including attorneys and school personnel. Parents will benefit from organizing the documentation into folders and creating a list of the contents. If the parent is using an attorney, this step will save both time and money in legal costs. 2. Meet with a special education advocate: Even if the parents do not choose to use advocacy supports in the due process hearing, it is still beneficial to meet with an advocate during the early stages of the process. A special education advocate can explain the process and the parents’ rights, assist in organizing documentation, and can help to file the request for a due process hearing with the state education agency. Advocates also provide a

level of emotional support during the process. Due process hearings are stressful, drawn out proceedings that take a toll on parents and their child. A skilled advocate will provide coaching, encouragement, and support throughout the process. 3. Consult with an attorney: As discussed previously, parents win a higher percentage of due process hearings when they are represented by an attorney. However, legal representation often comes at a steep financial cost. In the early stages of the process, it may be worth the money to consult with an attorney that is knowledgeable about special education law. The initial consultation is often provided at a reduced rate. For parents experiencing financial hardship, law firms and non-profit legal advocacy groups may provide attorney representation at reduced cost. Parents may contact local law firms, ask special education advocates to recommend attorneys who specialize in special education law, or may contact their regional Parent Training and Information Center (www.parentcenterhub.org/find-your-center/) for information on special education attorneys. 4. Take advantage of the resolution session: Federal special education law provides parents and schools with the option for a resolution session prior to the due process hearing. This meeting is essentially a last attempt to resolve the dispute before proceeding to the hearing. It is important for parents to know that the school district may not include an attorney at the resolution session unless the parent also has legal representation. If the two sides do not feel that a resolution session will be productive, they are encouraged to reconsider using mediation to resolve the differences. In the event that the resolution session is not effective, then the final step in the process is to proceed with the due process hearing.

options for engaging in less costly and adversarial dispute resolution, and taking specific steps if they decide to go forward with a due process hearing. Hopefully this article will assist parents in making informed decisions regarding special education dispute resolution. ABOUT THE AUTHOR: Dr. William Blackwell is an assistant professor of special education at Sam Houston State University in Huntsville, TX. His work focuses on special education dispute resolution and school choice policies for children with disabilities.

References Blackwell, W., & Blackwell, V. (2015). A Longitudinal Study of Special Education Due Process Hearings: Issues, Representation, and Student Characteristics. SAGE Open, 5, 1-11. Daggett, L. M. (2004). Special Education Attorney’s Fees: of Buckhannon, the IDEA Reauthorization Bills, and the IDEA as Civil Rights Statute. UC Davis Journal of Juvenile Law & Policy, 8(1), 1-53. Individuals with Disabilities Education Improvement Act, 20 U.S.C. § 1400 et seq. (2004). Mueller, T. G. (2009). Alternate Dispute Resolution: A New Agenda for Special Education Policy. Journal of Disability Policy Studies, 20(1), 4-13. Center for Parent Information and Resources. http://www.parentcenterhub.org/ Wright, P., & Wright, P. (2006). From Emotions to Advocacy: The Special Education Survival Guide (2nd edition). Hartfield, VA: Harbor House Law Press, Inc.

CONCLUSION Although most individualized education programs (IEPs) are developed collaboratively, there are situations in which disagreements arise that are not easily resolved. The dispute resolution options outlined in federal law can be costly and often increase the levels of stress experienced by parents. When navigating this difficult territory, parents can benefit from being familiar with the research on due process hearings, considering other EXCEPTIONAL PARENT | EP Magazine • September 2017 35

Helping parents Help tHeir Kids

tHriVe in scHool

BY KATHERINE FIRESTONE

S

chool was hard for me. I felt like an imposter. I was in honors classes but I felt like I had to work so much harder than everyone else to get the same grades. I had to read to myself out loud so that I would understand what I was reading and not skip ahead. It took forever. Then I had to go back and highlight everything I had just read to make sure I remembered some of it. Little did I know at the time, that was part of my ADHD. I struggled with undiagnosed ADHD until my Junior year of high school. Thankfully, I was smart and was able to create strategies, like reading my textbooks aloud, to overcome the disadvantages I faced. I couldn’t plan my time. I never read instructions. I constantly made careless mistakes. My parents were also a huge help. My mom would copy all of my textbook pages so I could highlight them and then she’d stay up late to keep me company while I worked, which helped me to focus. Both of my parents emphasized hard work and persistence, while also encouraging me to be on the lookout for “the goods” every day. It was a winning combination. The ADHD diagnosis also helped – it provided me with a new strategy for moving forward. My ADHD hasn’t gone away. I’m not a detail-oriented person and I still have typos in important documents. But I can plan my day out to almost the minute. I can prioritize my work. I know

exactly what needs to get done and how I am going to get it done. And when I’m so stressed out that I start thinking about everything and nothing at the same time, I meditate. With my helpful parents, tutors, and the ADHD diagnosis, I excelled at school. I graduated high school at the top of my class and went to the University of North Carolina (UNC) at Chapel Hill. At UNC, my honors thesis on recognition memory was published in the Journal of Experimental Psychology: Learning, Memory, and Cognition and I graduated as a member of Phi Beta Kappa. But I didn’t want to be a researcher forever. I wanted to apply the research in the real world and have an impact. When I graduated from college, I started teaching at Greenwich Country Day School. My students were wonderful, but like all students, they weren’t perfect. They were learning. They were learning to be kind, thoughtful friends and citizens. They were learning to write and to read and to do math. They were learning about their world. And they needed help. I realized as a teacher that each of my students needed round-the-clock support. And I learned that parents wanted to provide that support, but did not always have the training to do what was best for their kids. After Country Day, I worked as an Executive Functions Coach at the Southfield Center for Development, where I taught middle and high school students the skills needed to be successful scholars. Again, I met parents who wanted to help, but who did not have the required knowledge base. EXCEPTIONAL PARENT | EP Magazine • September 2017 37

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ith this background, I knew I wanted to help children succeed by opening a nonprofit dedicated to parent training. However, I wanted to make sure I could run a nonprofit efficiently and avoid the many pitfalls that have led other nonprofits to not live up to their potential. I therefore went to the Johns Hopkins University Carey Business School where business is taught with humanity in mind. After graduating, I spent some time working for an investment firm in order to learn how a successful for-profit business operates, so I could ultimately apply those skills to my nonprofit. In 2014, after years of education, experience, and training, I officially launched Fireborn Institute. We provide parents and caregivers with strategies to improve the academic lives of their learners. Through a variety of practical and easy-to-remember trainings and tools, Fireborn seeks to empower every parent with the essential knowledge base needed to help their children thrive at school and beyond. And we focus on way more than ADHD and Executive Functions. We help parents help their kids with: • Academics: Homework help. How to help your child write a paper or do their math homework without tears. • Social and Emotional Development: How to help your child develop skills such as empathy and grit. • Life Skills Acquisition: How to help your child develop their executive functions (ability to plan, manage time, and organize, etc.) • Parenting: How to be the best parent you can be during the most stressful times! Our mission is to help parents help their kids THRIVE in school – both academically and socially. The focus is on thriving, as opposed to “succeeding,” because you can succeed and not thrive – you can have a great job, but not feel fulfilled. Through our services, we provide parents strategies on topics ranging from helping with homework, to conquering a messy backpack, to developing empathy, to how to communicate with your distracted teenager. These tips come from the research psychologists and others are doing in education and parenting. Our strength is taking that information and sharing it with parents in an easily digestible way. We work to achieve our goal by meeting parents where they are – online and on their devices (so they can listen in the car or at the gym), as well as at PTA meetings, at business lunches, and at home.• ABOUT THE AUTHOR: Katherine Firestone, based in the Greater New York City area, is the Founder & CEO of Fireborn Institute.

38 September 2017 • EP Magazine | EXCEPTIONAL PARENT

fireborn institute services As a nonprofit, the majority of our services are free as we work to reach as many parents as possible. These include:

thE hAPPY StuDENt A podcast for parents on promoting happy academic and social lives. Easily accessible anywhere you can listen – in your car, chauffeuring your kids around, waiting in line, working out, and making dinner. The Happy Student can be found on Apple Podcasts, GooglePlay Music, and Podomatic. Each episode is different because we want to cover a variety of topics and conversations that parents might be dealing with! In the past, we have had guests, such as, education reformist and author of Creating Innovators, Tony Wagner or school psychologist and author of The Grit Guide for Teens, Dr. Caren Baruch-Feldman.

lEcturES & coffEE chAtS We have a couple of lectures we give for free at PTA meetings, such as “Be Ready! The Well-Put-Together Student” where parents learn practical strategies to get their kids to school on time with hair brushed, homework ready, an organized backpack, and a jacket!

ADDItIoNAl frEE rESourcES Fireborn has a monthly newsletter, “Fireborn Flickers” – quick video tutorials, a blog (Fireborn Fireside), and we actively post interesting articles across social media.

MY NAME IS JACKSON FUKUDA AND I HAVE ARGINASE DEFICIENCY I AM A 26-YEAR-OLD GRAPHIC DESIGNER… BY JACKSON FUKUDA

his is my story with arginase deficiency. A decent amount of information was told to me by my parents. I felt that they would be the best ones to tell my story when I was diagnosed and how life was for me at a very young age. At a young age they started to notice a big difference between other children my age and myself. I was growing at a lot slower rate and was clumsy. They noticed with the least amount of exercise, I would start to cough and vomit. It happened when I played, ran, laughed or just watched a VHS with my friends. They also noticed I walked differently than other children by walking high on my toes and falling down often.

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40 September 2017 • EP Magazine | EXCEPTIONAL PARENT

PHOTOS AND IMAGES PROVIDED BY JACKSON FUKUDA

fter many doctor visits, lots of tests, and months of fear, a Metabolic Specialist diagnosed me with a rare genetic defect, arginase deficiency, a part of the urea cycle group of birth defects. I was just four years and nine months old. When first diagnosed, my outlook was bleak and my parents received very little information or guidance regarding the defect and how to help and support me. They were told to take me home and stop feeding me protein. Their initial information came from websites that they stumbled on. The information in 1995 was sporadic at best on urea cycle and even less on my defect, arginase deficiency. Because of the diagnosis, my family changed my diet which, instead of helping, caused me to throw up throughout the day for

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ALL FOR ONE: (Opposite page) Jackson’s family celebrates his success. “As a family we are grateful for this opportunity to tell our story and hope that we can and will help other families with arginase deficiency and urea cycle disorders.”

110 days. I eventually lost all of my body mass and muscle, and weighed about 25 pounds at 5 1/2 years old. Everywhere we went my parents carried a sauce pan, and towels to help with my vomiting. The only saving grace for us during that dark period, was my wonderful Pediatrician, Dr. Norah Gutrecht of Orange, California, my first guardian angel. She was willing to do anything we asked. Because of the rarity of the defect, she admitted that she could only help us find the right doctors. That was nearly impossible due to the lack of information and some doctor’s unwillingness to treat such a rare disease. Several doctors become irate when asked to read information my parents were able to find or refused to call another doctor for reference information. Thankfully my parents found a wonderful organization called National Urea Cycle Disorder Foundation (NUCDF). Tish Simon, President at that time, helped us immensely. Tish was wonderful and very informative. The NUCDF was so supportive and an

GALAXY: My piece illustrates that often, when you or someone you know is diagnosed with a rare disease or maybe any serious disease, it often feels as if the world is crumbling and falling down around you, and life becomes chaotic. But, at the same time, being diagnosed with a rare disease can give someone a purpose and meaning. It can allow them to do something that can help others who are like them. That is how it has been for my family and me. Arginase Deficiency has allowed us to do things that can and hopefully will help people with Arginase Deficiency and Urea Cycle disorders. EXCEPTIONAL PARENT | EP Magazine • September 2017 41

important part of our success. Cindy Le Mons, the current executive director of NUCDF, and her team were also an important part of the puzzle in our success. Also helping us from NUCDF was Mindy Rosen, whose son also suffered from arginase deficiency. Mindy told my parents about a doctor specializing in arginase deficiency at UCLA. Dr. Stephen Cederbaum agreed to speak to my parents and we found our second guardian angel. Dr. Cederbaum was kind and understood the pressure and heartbreak we were going through. After a long telephone conversation, my parents knew I would have obstacles, but none we could not overcome. We knew that together, we could make sure I had a loving, productive, and happy life. We were lucky to find Dr. Cederbaum because he was and is the foremost authority on arginase deficiency. I must say I owe my life to Dr. Cederbaum. There were years of doctors treatments, hospital visits, and tears, but with Dr.

Cederbaum and Dr. Gutrecht’s encouragement, love, and support, we made it through. As mentioned earlier, I am a graphic designer by profession. I would like to share how I found my calling as an artist

“IT IS AMAZING TO BE DOING SOMETHING I LOVE AND AT THE SAME TIME, I’M INVOLVED WITH SOMETHING THAT CAN, AND HOPEFULLY, WILL HELP PEOPLE SUCH AS MYSELF.” despite the fact that I have a rare disease. For as long as I can remember, I have always loved to draw and sketch. In elementary school I often turned in my

homework covered in drawings and an apology. During my sophomore year of high school, I began to contemplate what I really wanted to do for a career. After I had taken an art class in high school, my career path was cemented. Enrolling in college, I knew I loved art and I wanted to be an artist as a profession, but I wasn’t too fond of the idea of being a visual artist such as a painter. Luckily, I found graphic design, a field where I could still create art but have a stable career. hus, when I entered California Baptist University (CBU), I majored in Graphic Design. My first day, I realized that graphic design was my passion and that is what I wanted to do. The idea of doing art that could affect society was intriguing. After a couple years, my major would require me to do an internship. A good friend from church gave my contact infor-

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ABOUT ARGINASE-1 DEFICIENCY BY STEPHEN CEDERBAUM, MD he patient enters the physician’s practice with a complaint of progressive spasticity, a diminished rate of intellectual attainments and a diminished rate of growth and very worried parents. A battery of diagnostic tests is done and an elevated level of arginine, an amino acid, is found in the plasma. This was roughly the story with which Jackson Fukuda, the subject of an autobiographical essay that appears in Exceptional Parent in this issue, presented to my clinic. Exceptionally, and fortunately, he had no evidence of intellectual difficulty and as you can see from the story that he co-authored with his parents, he suffers no deficit today. We easily confirmed the diagnosis of arginase deficiency and began therapy that will be, in the absence of a more definitive treatment, life-long. The reason this has come about is the essence of my essay. As the readers of this magazine will know, the food that we eat and the waste that we excrete all go through a complicated series of steps that are necessary to maintain human life and health. There are several thousands of these individual steps that convert one substance into another. The partial or complete absence of most of these results in either an accumulation of the substance that is acted-upon, or a deficiency of the product of the reaction, much as a beaver dam would influence the stream in which it is constructed. These deficiencies are referred to as inborn errors of metabolism. These are inherited disor-

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42 September 2017 • EP Magazine | EXCEPTIONAL PARENT

ders, most often inherited in a manner referred to by geneticists as recessive. This means that each parent is a carrier of an abnormal gene, but its effect is compensated for by the normal copy on the sister chromosome. When two abnormal genes are present the disorder expresses itself, equally in males and females. Jackson suffers from a deficiency of an enzyme by the name of arginase-1 (there are two different arginases in the body with different functions). Arginase-1 is part of the pathway called the urea cycle which takes the excess nitrogen that we have in our bodies as part of a normal diet and converts it into a harmless and easily eliminated compound call urea. In the absence of a normal functioning urea cycle, nitrogen which is toxic to the body when present in excess, accumulates. In some of the later steps in the cycle (arginase-1 is the final enzyme in the cycle), its precursor, in this case, arginine accumulates. Unlike ammonia, whose toxic effects are felt early, often presenting in the newborn period as poor feeding, lethargy and coma, the effects of arginine accumulation are more insidious, and in the absence of effective newborn screening, is usually only detected after partially irreversible brain damage has occurred. This is similar to the more frequent and well-known disorder, phenylketonuria (PKU). Arginase-1 deficiency is a very rare disorder with a frequency estimated of between 1/500,000 to 1/million births. It occurs more frequently in founder populations in the Canadian province of Quebec and Northern Portugal and in places with

WINDS OF CHANGE: Meredith Grimm asked if I would assist her on a patient advocacy website for Aeglea, focusing on arginase deficiency and urea cycle disorders, that would help current and new patients overcome thier hurdles. mation to a person she knew who was doing something similar to what I was studying. This person worked at the University of California, Irvine (UCI). He contacted me and asked if I wanted to help him with some projects at UCI. Of course I said yes. Even though it was early for my internship, I knew when opportunity arises, it is best to take advantage of it.

I assisted him as a graphic artist and almost immediately, I was helping him on major projects. I worked hard and was doing something I enjoyed. It was a dream come true and being able to work on such a significant project made it that much better. While interning at UCI, I was working in the medical field, specifically neurological

high rates of consanguinity, or marriages amongst people who are related. As I stated, the first signs that something is wrong tend to be overlooked, attributing the variation as part of the normal spectrum of developmental differences amongst individuals. That something is very wrong is usually perceived by the age of two to two-and-a-half. The child has stiff limbs, walks on their toes, falls excessively, may fail to gain new language milestones or lose them, and in many cases, the individuals fall off their growth curves. If mild elevations of ammonia are present, the individual may complain of a stomach ache, nausea and may even vomit intermittently. Patients may also have a preference for low protein foods, since the amino acids in proteins are the major source of ammonia in the diet. If untreated, the condition continues to progress with increasing spasticity, increasing reflexes, definite loss of language and awareness of the environment and in some cases death due to the effects of the brain damage that has occurred. The heart, other muscles, kidney function, and many neurological functions are unaffected. Liver function is almost always mildly abnormal and infrequently leads to liver failure. Treatment, if begun early and practiced vigorously, can reverse many of the symptoms and prevent the progression of the disorder. It consists of a diet of low protein foods such as many fruits and vegetables, an amino acid supplemental product to make up for deficiencies in the low protein diet and a low protein source of non-protein calories such as carbohydrates and fat. Individuals are given medicines that divert ammonia from urea cycle into other harmless products as well. The names associated with these products are BUPHENYL® and RAVICTI®. Like all artificial diets, these diets are not very palatable and are

disorders. Both my internship, and later my Graphic Artist/Print Specialist job, involved neurological disorders, primarily dementia, Alzheimer’s disease and Huntington’s disease. It was a real honor to be involved in something that was helping others, although not directly but indirectly. Plus, since my grandmother had dementia and later Alzheimer’s disease, it felt that

dull and repetitive. Maintaining these diets over a long period of time is a burden on families, inhibits travelling, requires letters to explain why the family carries large amounts of white powders, and are often rejected by growing children who want to eat what their peers eat. Those outside of the immediate family cannot understand what is going on and may interfere with the carefully developed family routine. Efforts to decrease these burdens are welcomed by the affected patient community because of these difficulties. Imagine the growing child, adolescent and adult facing continually, the choice between tempting and quite normal foods and the knowledge that any deviation from an almost uniquely limiting diet may cause them to fall short of their developmental potential or, even worse, result in neurological dysfunction in the future. It is not a pleasant daily choice. Despite years of work and carefully designed studies in man and animals, we are unable to pin down the mechanism by which the enzyme deficiency and the elevated levels are arginine causes brain damage. This is unfortunate since we then cannot design more specific therapeutic measures to deal with the risk of the damage. Work is ongoing but the problem is not solved. ABOUT STEPHEN CEDERBAUM, MD: Stephen Cederbaum, MD is Professor, Emeritus of Psychiatry, Pediatrics and Human Genetics at the University of California, Los Angeles (UCLA) and has been caring for patients with Inborn Errors of Metabolism for more than 45 years. He first encountered a patient with arginase 1 deficiency in 1972 and decided to make it the focus of his professional career. He lives in Santa Monica, CA with his wife. They have two grown children.

EXCEPTIONAL PARENT | EP Magazine • September 2017 43

my work was contributing to the goal of helping people like her. After graduating from CBU, I settled in, working at UCI. I greatly enjoyed my work, utilizing what I studied, but also that I was working in a field that could and was helping people. Ultimately, my supervisor moved on and my involvement with UCI ended. My supervisor encouraged me to continue forward, look for new opportunities and use all of my graphic design skills. Luckily, shortly after my work at UCI ended, Dr. Cederbaum introduced me to Meredith Grimm of Aeglea Biotherapeutics. She came to my house, met me and my family and we shared my story with arginase seficiency. Early 2016, Meredith asked if I had an interest in assisting her on a website for Aeglea. The website’s focus was going to be about arginase deficiency, as well as urea cycle disorders. It was going to be a patient advocacy website that would hopefully benefit current and new patients with

overcoming the greatest hurdle of having arginase deficiency. Of course I said yes, I was thrilled and had a personal stake in the project. I assisted Meredith and Aeglea for nearly two years and have enjoyed every moment of my efforts. Additionally, I have assisted Aeglea with an ad for the Genetic Metabolic Dietitians International and provided them with designs that were used in the most recent Aeglea Investigator Meeting in March. It is amazing to be doing something I love and at the same time, I’m involved with something that can, and hopefully, will help people such as myself. Last year, Meredith informed me about an art competition for people with Rare Diseases. I recently entered the Rare Artist competition for the second time. The piece I submitted this year is titled “Galaxy” (see page 41) It is in the Adult Digital and Photography category. My life has been full of curves, speed bumps, one big diet and loads of blessings.

We have all learned to work around the obstacles and people’s assumptions of what is going on in our family. My family knew from the beginning it was not going to be easy, but have found joy, friendship, love, and compassion in the journey and have grown as a family. encourage anyone or any family going through tough medical times, be patient with one another, talk, love each other, realize not everyone deals with medical situations the way you think they should. Having a rare disease is challenging at best and arginase deficiency is no exception and I learned at a young age to always do my best with what has been given me. I was given arginase deficiency and several guardian angels to walk with me on my journey. As a family we are grateful for this opportunity to tell our story and hope that we can and will help other families with arginase deficiency and urea cycle disorders.•

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So far $7,500 is committed to help Houston. Help us reach our goal! Thank you CPF friends who have already given!

DONATE

The Cerebral Palsy Foundation is only $2,500 away from a complete match. Let the families of Houston know that we are with them! As the waters subside and families start to rebuild they will need our help. All funds will go directly to the Tiny Tot Clinic in Houston. The Tiny Tot Clinic in Houston is one of the few clinics in the US that provides this supportive and targeted care for families of babies at high-risk for CP. Babies born too early or with problems around the time of birth are at the highest risk for cerebral palsy. Their families face uncertainty, anxiety and helplessness unless they receive targeted support from specialized clinics. Every dollar counts. Thank you for your support.

44 September 2017 • EP Magazine | EXCEPTIONAL PARENT

Because my coach pushed me...

an win I ccan championships.

developmental coordination disorder the “hidden” facet of autism spectrum disorder

BY DR. SHELLEY MARGOW, OTD, OTR/L

Clumsiness is an inevitable part of growing up, and all children bump into objects, drop things and sometimes fall in their journey to adolescence and adulthood. But there are some kids whose struggle to fully participate and learn new skills in daily activities at home, in the playground, and in the classroom is ceaseless. The cause is Developmental Coordination Disorder (DCD), a neurodevelopmental condition that affects 5 to 6% of school-aged children according to the National Institutes of Health. It's often under-or misdiagnosed, particularly in the U.S., where research and attention to the disorder lag those of European educators and clinicians. 46 September 2017 • EP Magazine | EXCEPTIONAL PARENT

s an Occupational Therapists (OT) I know the frustration and heartache of Developmental Coordination Disorder (DCD), Autism Spectrum Disorder (ASD), and associated conditions cause for children and their families. I want to make parents aware of this sometimes ‘hidden’ disorder, including ways to spot symptoms, and clinical methods to diagnose the condition. Once the diagnosis is correct, kids can have the intervention they need to fulfill their potential in school and life. The ungainliness of DCD-affected children—more of them are boys than girls—may cause people to think they’re incapable or unintelligent because they can’t manage basic tasks. This isn’t true. What is true is that children with DCD usually have average or above average intellectual abilities. At the same time, they have motor difficulties caused by atypical brain development. The formation of new connections between different parts of the brain when learning a skill is affected, as well as impeding the child’s ability to use the information to plan, adapt and control movement. These kids are often disdained as “troublemakers” or lazy, and teachers may feel the child isn’t trying to meet their potential in the

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Researchers noted that many individuals with ASD aren’t assessed for DCD although they should be, since motor skill challenges should be addressed early to head difficulties posed to learning and socialization.

the importance of early, accurate diagnosis

classroom. Parents can become frustrated when they don’t respond quickly or follow instructions. In fact, these children are often trying very hard, but it takes them longer to process and complete activities. Typically disorganized, these kids may struggle with emotions and get easily upset or frustrated, which leads to disruptive behavior. These children want to fit in, and yet are keenly aware of their differences. A report from the National Institutes of Health has found, “Children and adolescents with coordination difficulties appreciate receiving appropriate treatment, and searching for help can be extremely frustrating for families.” But before you can treat, you need to diagnose. DCD Linked to ASD and Other Disorders. While some people may have DCD in isolation, it’s common that the disorder is just one of a complex of overlapping neurological and other challenges individuals face. Either separately or in amalgamated instances, the conditions can lead to anxiety and depression. In 2017, research from the University of Texas Arlington found that “children diagnosed with autism spectrum disorder should be checked for developmental coordination disorder since the two maladies are linked.”

Although they are bright, many children falter because their problems with pencil or computer keys hold them back from showing their full potential. Often they’re ‘mislabeled’ or misdiagnosed as slow learners, dyslexic, or having attention deficit disorder, because symptoms may look similar to other conditions. Given extra time to practice lessons and activities, they can participate as part of a team or group. The earlier diagnoses and appropriate, evidence-based therapies begin, the sooner children who are struggling—and developing a negative attitude to school, learning, and social engagement—can be helped. Symptoms. The hurdles children with DCD face fall into multiple areas and affect everything from simple movement to emotions. Watch for signs in areas like these: • Communication: Children with DCD may have trouble expressing their ideas or pronouncing words. They may also have trouble adjusting voice, volume and pitch. • Academics: The inability to write quickly can create classroom challenges, like taking notes and finishing tests. Children with speech difficulties also may have difficulty with reading and spelling. • Movement: Bumping into or knocking things over may happen frequently. The difficulty with gross motor skills like running, climbing and hoping and fine motor skills like coloring, or playing with Lego make school and social activities uncomfortable. • Daily Tasks: Mastering independent, everyday tasks can be difficult. At elementary school age, kids may still need help to brush teeth or button a shirt. • Emotions and Behavior: Children may behave immaturely, be overwhelmed in group settings, find socializing anxiety producing, and difficulty forming friendships. As a result of all these challenges, children may suffer from low self-esteem over time. • Coping Strategies Can Mask Symptoms: DCD has been called the ‘invisible disability’ because many affected children develop coping strategies, so they’ll fit in better with peers or please teachers. There are things to be aware of that may hint at DCD. For example, they may use computers to avoid handwriting tasks and wear shirts without buttons, or shoes without laces, and avoid gym class or other physical activities. Diagnosis and Referral Often Begin in the Classroom. Teachers are often the first referral source when they notice poor skill development that interferes with overall academic performance. Many children act out or melt down from frustration. If teachers are aware this is a common behavior in students with DCD, they can take action. Speech difficulty with controlling lips, tongue and jaw movement and coordination, breathing and salivation are easily spotted symptoms and may be the point where referrals to speech therapists begin. Clinical Assessment Tests of Motor Coordination. There are standard motor coordination tests to pinpoint diagnosis: Bruininks– Oseretsky Test of Motor Proficiency (BOTMP);10 the Movement Assessment Battery for Children (MABC); the Peabody Developmental Motor Scales (PDMS), and the Test of Gross Motor Development (TGMD). EXCEPTIONAL PARENT | EP Magazine • September 2017 47

Quantitative Electroencephalogram (QEEG) for Precise Diagnosis. While more research is underway, a 2016 study verified specific areas of the brain linked to DCD. Neuroimaging isn’t difficult for most children to undergo and is a way to both identify specific conditions and track progress. A quantitative electroencephalogram (QEEG) reveals electrical patterns at the surface of the scalp which reflects cortical activity. The digital data is statistically analyzed and visualized as ‘brain maps.’ In my practice, I use QEEG to record baseline values and check at intervals to track and verify therapeutic progress. Neuroplasticity and the Brain. Neuroplasticity, or brain reorganization, is the brain’s ability to reorganize itself by forming new neural

dcd: part of a constellation of related conditions

connections. The nerve cells compensate for injury and disease and adjust their activities in response to new situations or changes in their environment, including different types of stimulation and practices. Seeing these adaptive responses and the ability of children to learn new skills with the proper intervention and support is what makes my work so rewarding. Change can happen, and there are even more exciting possibilities that are already here or on the horizon. New Approaches and Assistive Interventions. Taking a multidisciplinary approach to deliver services in occupational, speech, and physical therapy, and utilizing sensory integration and neurodevelopmental tools specific to each individual and family is the key to a better future for children with neurological challenges. In my practice, I use intensive, neurological treatment to facilitate brain plasticity, including the use of The Margow Model and a next-generation teaching robot, Milo. Milo’s advanced capabilities are purpose-built for autism intervention, special education, STEM instruction and university research. Comprehensive approaches support children to make great strides and better connections to learning, mobility, and improved social interactions.• ABOUT THE AUTHOR:

CORRELATIVE RELATIONSHIPS: As many as half the children with DCD also have ASD. Many have other developmental disorders.

Dr. Shelley Margow is CEO and clinical director of Children’s Therapy Works, a pediatric private practice in Roswell, Georgia and is a consultant to Robots4Autism. After earning her Bachelor of Science degree in Occupational Therapy at the University of the Witwatersrand in Johannesburg, South Africa, she received her Post-Professional Master’s Degree from Sargent College at Boston University and also completed Sargent College’s doctoral program for occupational therapy. Dr. Margow published her first book, Is This My Child? Sensory Integration Simplified, in 2014

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

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

48 September 2017 • EP Magazine | EXCEPTIONAL PARENT

PUBLIC BENEFITS A HOLISTIC GUIDE FOR FAMILIES WHO HAVE A LOVED ONE WITH SPECIAL NEEDS BY CALEB HARTY

Many important benefits are outlined below, but not all. Also, effort has been made to point out important aspects of the programs, but outlining every detailed exception, rule, etc., is beyond the scope of this informational guide. For context, most of these programs are “means-tested,” which means they are usually not available until the child turns 18 because up until that point the parents’ assets and income are taken into account, which is often too high to qualify.

1) SUPPLEMENTAL SECURITY INCOME

2) MEDICAID

• Individuals may be eligible for SSI if they do not have "substantial gainful activity" (SGA) and a disability. SGA is defined as earning less than $1170/month (or $1950/month if blind). • SSI payment is up to $735/month. It can be less for various reasons such as the individual living at home. Some states also have a state supplement program (SSP) which gives the SSI recipient a smaller additional payment. • Individual usually cannot have more than $2,000 in their name to qualify (there are certain items not counted, such as a car, home, burial plot, and other permitted items). • Note: $20 of unearned income (a gift from a parent for example) is permitted and the first $65 of earned income also does not reduce benefits, per month. There is a $1 reduction in benefits for every $2 earned (after the $65 exclusion • Rent subsidies and food assistance does not count against SSI. • Qualifying for SSI can provide automatic eligibility for Medicaid in some states.

• Comprehensive healthcare for low-income individuals and those with disabilities. • Like SSI, individuals in many states usually cannot have more than $2,000 in their name. • Medicaid covers much more than just health insurance; various home and community-based services are only available via Medicaid. For this reason, even if other health insurance is available through a parent, etc., it is often recommended to qualify for Medicaid if possible.

50 September 2017 • EP Magazine | EXCEPTIONAL PARENT

3) SECTION 8 • Also called federal “Housing Choice Voucher” program (HCV). • Housing vouchers for low-income individuals. • To qualify, the individual must have an income of 50% of the

“area median income”. If already qualified for SSI, he/she will most likely also be eligible for Section 8 based on income. • No asset limits for qualification, but interest earned on assets counts towards income limit. • Several different variations of the program, but the most common is when the individual pays approximately 1/3 of their income towards housing rent, Section 8 voucher covers the remainder. • It is often recommended as soon as the child turns 18, to get on the Section 8 waiting list (which can reportedly be as long as 7-10 years). Even if not sure the child will need it, it can always be turned down if approved in the future.

• Disability onset has to be before age 22 and be continuous through the time the person is claiming benefits. • It’s possible to receive SSDI and SSI simultaneously, but not typical. • After he/she is getting SSDI for 2 years or more they are eligible for Medicare and can have this in addition to their Medicaid.

7) ABLE ACCOUNTS

4) SUPPLEMENTAL NUTRITION ASSISTANCE PROGRAM • Supplemental Nutrition Assistance Program (“SNAP”), formerly referred to as “food stamps.” • Food assistance programs to individuals with low income. • Individual cannot have more than $3,250 in countable assets. • Income limitations similar to SSI (if already receiving SSI however the individual will qualify). • Fro single individuals for example, the monthly allotment is $194 – 30% of net income.

5) PERSONAL CARE ATTENDANT • Funded through Medicaid. • Program in which the individual with needs hires a PCA to help with Activities of Daily Living (ADL’s) such as bathing, dressing, transfers, etc.

• Result of the Achieving a Better Life Experience Act in December 2014. • Investment account for eligible individuals with special needs for “qualified disability expenses” (QDE) such as housing, education, transportation, and many other items. • Funds grow tax-free and are distributed tax-free. • Disability onset must have occurred before individual turned 26. • Accounts up to $100,000 do not impact a person’s SSI benefits. • Maximum contribution per year is $14,000 from all sources. Individual can only have one ABLE account. • There is a payback provision, meaning if the individual with the account passes away, any remaining funds are used to payback Medicaid benefits the person received. *2017 figures. Note: This guide is only intended to be informational in nature. There is no assurance of complete accuracy. Please visit the public benefits government websites directly for more detailed information on eligibility, amounts, etc. Caleb Harty and Harty Financial do not provide legal or tax advice and any information in this guide is not intended to be interpreted as such. To receive a free public benefits resource guide and/or more information email your name to [email protected] and include “resource guide” in the subject line or call 978-972-5961.•

6) SOCIAL SECURITY DISABILITY INSURANCE • Program similar to SSI, administered through the Social Security Administration (SSA). • Once a parent begins collecting Social Security (usually at retirement), their child with disabilities is eligible to receive half of that payment, which is typically higher than SSI payments. • After the parent passes away, the payment the child is receiving goes to 3/4 of the parent’s Social Security payment. • Unlike SSI, not “means-tested” meaning there is no asset restriction. There is also no limit on unearned income, however, earned income above the SGA limit as outlined in section 1 for SSI would disqualify the individual from receiving SSDI payments.

ABOUT THE AUTHOR: Caleb Harty is the Principal of Harty Financial. He specializes in working with parents who have a child with special needs as well as retirement planning. He lives in North Reading, MA and can be reached at [email protected]

Web Resources 1) https://www.ssa.gov/oact/cola/sga.html 2) http://www.mass.gov/eohhs/consumer/insurance/more-programs/ 3) https://www.medicaid.gov/medicaid/benefits/list-of-benefits/index.html 4)http://www.tacinc.org/knowledge-resources/publications/e-books/section-8-madesimple/?utm_source=TAC+News+-+September+2016&utm_campaign=TAC+News+September+ 2016&utm_medium=email 5) https://www.fns.usda.gov/snap/eligibility 6) http://www.thearcofghn.org/web/services-2/adult-family-care-afc/ 7) http://www.mass.gov/eohhs/consumer/insurance/masshealth-member-info/pca/ 8) https://www.ssa.gov/planners/disability/index.html 9) https://secure.ssa.gov/poms.nsf/lnx/0501130740

EXCEPTIONAL PARENT | EP Magazine • September 2017 51

PRACTICE WITHOUT Practice Without Pressure™ greatly reduces and, most times, eliminates the need for sedation and restraint.

The PWP model includes the individual, the family/caregiver, and the clinician, and introduces the PWP practice specialist into the paradigm.

PRESSURE BY DEBORAH JASTREBSKI

THE NEED You wake up one morning and your tooth hurts. Although it’s not your favorite thing you call your dentist, make an appointment and go get it fixed. You’re nervous but you tell the dentist that, she helps you through it, and you’re ok. Then you realize you need to get a blood test done for your insurance physical so you stop by the lab. Again, you’re nervous because needles aren’t your favorite things, so you tell the phlebotomist, he gives you a moment to collect yourself, and you get through it. You also need a haircut so you stop to get that haircut without a moment’s thought. Now let’s talk about the experience two other people had in their typical day. Mandy, at age 9, is a little girl who loves to sing but also happens to have Down syndrome. Her dental appointment started by being so afraid that she peed herself in the parking lot. After the dental appointment, she went to get a haircut and three people held her down, including her mom, who thought that’s how it had to be. John, who loves music and was in a rock band in his younger days fell off a ladder and sustained traumatic brain injury at age 39. Now at 43 John doesn’t speak and needs help with everyday life. When he went to his dentist appointment, he hit and bit the dental staff because of his fear. At his blood draw appointment, he ran out of the room at the sight of the needle, then had five adults hold him down to get that blood. These individuals represent people with developmental disabilities 1 (i.e. Down syndrome, autism, cerebral palsy) and adult onset disability (i.e. traumatic brain injury or dementia). Although total disability population percentages vary depending on source, nationally, the estimate of significant disability is 11% to 19%.2 Simply put, over 1 in 10 people in a supermarket queue will have a disability. It’s estimated that over 3% of the world population has an intellectual disability.3 Of those 10 or so people standing in line at the supermarket, chances are that one of them either has an intellectual disability, or that their lives are touched by someone who has an intellectual disability. 52 September 2017 • EP Magazine | EXCEPTIONAL PARENT

People with disabilities, especially those with intellectual disabilities, are very often not seen at a “regular” doctor or dentist or salon. According to Dr. Steven Altabet, researcher at University of Washington, 43% of people with disabilities refuse to participate in dental exams. Of the remaining 57%, 24% reported anxiety and worry.4 Dr. Altabet also reports that only 20% of dental providers are willing to provide care to people with disabilities because of resistance.5 Special Olympics research into the competency of clinicians treating people with intellectual disabilities showed that 52% of medical school deans, 53% of dental school deans, 56% of students and 32% of Practice Without Pressure prepares medical residency profearful clients for medical, dental and gram directors respondpersonal care. The PWP Practice ed that graduates were Model™ provides a framework for “not competent” to treat people to become comfortable with people with intellectual procedures they once feared, resisted 6 disabilities. or avoided. This step-by-step approach Until recently, best promotes trust and learning. Learn more at http://www.pwpde.org practice for people who can’t be talked through a procedure has been sedation and restraint.7 For example, according to the American Academy of Pediatric Dentistry (adults with disabilities are lumped in with pediatrics in dental guidelines), it is ok to use protective stabilization – the restriction of patient’s freedom of movement, with or without the patient’s permission… using another human(s), a restrictive device, or a combination thereof and/or sedation, ranging from conscious sedation to general anesthesia.8 Often the individuals just don’t get the care they need until the issues become acute, and then they show up in emergency rooms where they are still held down or sedated.

THE SOLUTION The author, Deborah Jastrebski, created a model of care for her son Marc (Marc has Down syndrome and serious heart issues) called Practice Without Pressure™ (PWP), which greatly reduces and, most times, eliminates the need for sedation and restraint. The PWP model includes the individual, the family/caregiver, and the clinician, and introduces the PWP practice specialist into the paradigm. The practice specialist is key to operationalizing the philosophy, and works directly with all parties to build capacity, then gradually moves away as capacity is built. The philosophy is relationship based, and works to strengths. It pulls from many disciplines as needed based on the individual situation. PWP works with people of any age, ability level or diagnosis. PWP is now a nationally recognized model of care delivery. The Robert Wood Johnson Foundation (RWJF), the largest philanthropic organization for health and healthcare in the country recognized Ms. Jastrebski with a Community Health Leader award in 2011, one of only 10 awarded nationwide. PWP was included in the national Agency for Healthcare Quality and Research in their Service Delivery and Innovation Profiles. The Susan G. Komen

only the individual, but also their family and support staff, in ways to improve oral health for people with disabilities in their homes. In 2017, PWP completed a proof of concept pilot at the University of Maryland Dental School’s Special Needs and Geriatric clinic, partnering with Dr. Janet Yellowitz, clinic director and professor at the University. They are currently working with the University of Texas/Houston, Baylor College of Medicine’s Transition Clinic, and University of Maryland on a joint research project. PWP training and education for clinicians and families is provided by their corporate headquarters in Newark, DE (email [email protected], or call 302-562-9349). People needing practice sessions and medical (women’s health, phlebotomy), dental or personal care (hair, nails) can currently receive it at the PWP Pike Creek location in Wilmington, DE (email [email protected], or call 302-635-7837). ABOUT THE AUTHOR: Deborah Jastrebski is Founder and CEO of Practice Without Pressure, Inc.. www.pwpde.org

MODEL PATIENT: (Left) The author with son Marc; (Above) Marc, who now faces procedures calmly and with confidence, models dental X-rays with hygienist Kelly Voss for Brian Smith.

Foundation recognized PWP as one of only two organizations in the country to receive grants working with women with disabilities for breast health. PWP was introduced at the Pacific Rim conference on Disability, the Special Care Dentistry Association (SCDA), and in June of 2017 Ms. Jastrebski was a key speaker at the American Academy of Developmental Medicine and Dentistry’s (AADMD) annual conference in Houston. Since its inception PWP has served over 1200 individuals with disabilities and their family and support staff with practice sessions, procedures and training at their one Delaware location. It has presented the PWP philosophy and model to hundreds of clinicians both regionally and nationally. Along with the PWP Practice Model, PWP created Treasure Your Health™ (TYH), a program for women with disabilities and their family/support staff to educate them in women’s health. It also created Oral Health in the Home™ (OHIH), a program that works with not

References 1. Delaware Developmental Disabilities Council 2013 website, definition of developmental disability retrieved from http://ddc.delaware.gov/faqs.shtml chronic disabilities that are attributable to mental or physical impairments apparent before the age of 22. These disabilities tend to be life-long and result in substantial functional limitations in major life activities such as self-care, receptive and expressive language, learning, mobility, self-direction, capacity for independent living and economic self-sufficiency. 2. Delaware State Council for Persons with Disabilities, 2012 report Community and Choice, retrieved from http://scpd.delaware.gov/pdf/2012/Needs_Full_Report_Final_4-16-12.pdf 3. Special Olympics, national website factsheet 2013, retrieved from http://www.specialolympics.org/ uploadedFiles/Fact%20Sheet_Intellectual%20Disabilities.pdf 4. Altabet, Steven C. (2002), Decreasing Dental Resistance Among Individuals with Developmental Disabilities, retrieved from http://link.springer.com/article/10.1023/A:1016032623478#page-1 5. Clevenger, et al (1993), cited by Altabet, S. (2002) 6. Special Olympics (2005), Changing Attitudes, Changing the World, The Health and Healthcare of People with Intellectual Disabilities, retrieved from http://www.specialolympics.org/uploadedFiles/ LandingPage/WhatWeDo/Research_Studies_Desciption_Pages/policy_paper_Health.pdf 7. Satcher, David (2002), Closing the Gap: A National Blueprint to Improve the Health of Persons with Mental Retardation: Report of the Surgeon General's Conference on Health Disparities and Mental Retardation, retrieved from http://www.nichd.nih.gov/publications/pubs/closingthegap/Pages/sub12.aspx#one 8. American Academy of Pediatric Dentistry website 2013, retrieved from http://www.aapd.org/media/Policies_Guidelines/G_BehavGuide.pdf

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People with intellectual disabilities face health care providers who don’t have the knowledge or willingness to treat them. Despite severe need and higher health risks, people with ID are often denied health services.

ImprovIng HealtH WorldWIde to tHe most Underserved BY KRISTIN HUGHES SROUR, MBA

If you want to help straighten her bones, dig a hole in the ground, have your daughter stand in it and then pack it with soil. Do this every day for six hours. This was the advice that 10-year old Joyce Ainensasi’s parents were given to help their daughter with cerebral palsy stand and walk. As loving parents who wanted the best for their daughter, they followed the advice. So every day, for six hours, Joyce would stand in a hole packed with dirt patiently waiting for the treatment to work.

J

oyce lives in Kiwanga, Uganda, a suburb of the capital city Kampala. Her story is repeated again and again across the world in both developed and developing nations. People with intellectual disabilities (ID) face health care providers who don’t have the knowledge or willingness to treat them. Despite severe need and higher health risks, people with ID are often denied health services. This is why for over 20, Special Olympics has been training health care providers and bringing health screenings to people with ID in over 130 countries through its Healthy Athletes® program while simultaneously training healthcare providers at these events on how to work with people with ID and their families. Additionally, six years ago, Special Olympics launched a program called Healthy Communities, made possible by the Golisano Foundation, which aims to provide equal access to quality healthcare for people with ID in communities all over the world. Healthy Communities addresses the severe health disparities faced by people with ID through both immediate and long-term communitycentered solutions including providing ongoing health prevention programming, training health care providers, collaborating with governments, hospitals and community partners and developing self and family advocates. 54 September 2017 • EP Magazine | EXCEPTIONAL PARENT

In Uganda, Special Olympics Healthy Communities partnered with the Korea International Cooperation Agency (KOICA) to bring healthcare to people with ID. Last year, KOICA trained 95 local district health providers and Village Health Educators to identify people with ID and educate families on malaria prevention methods, as well as the signs and symptoms of malaria. The partnership between Special Olympics Uganda and KOICA also includes training coaches and family members how to do strength training exercises. Joyce’s father, George Abaho, was one of the family members to attend the trainings. He and the KOICA volunteers began working with Joyce, doing exercises on a daily basis to strengthen her legs and core. George learned that having Joyce stand in a hole in the ground every day was not going to improve her condition. “When KOICA started doing exercise with Joyce, she got much better” says George. Joyce has grown stronger and she no longer stands in a hole in the ground all day. She is able to attend school and play with other children. “I feel good because I can walk like other children. I am also happy because I can feed myself, take myself to the bathroom, and play like any other child. I feel so grateful for this,” says Joyce. The United Nations Convention on the Rights of Persons with Disabilities recognizes “the right to the enjoyment of the highest attainable standard of health without discrimination on the basis of disability.” However, people with intellectual disabilities continue to face discrimination, lower quality of care, and as a result, drastic health disparities. People with ID are two times more likely to die before the age of 50 than adults without ID. Globally, adults with ID are more than two times likely to be obese compared to adults without ID. There is often a misconception that the poor health of people with ID is due to their disability. Research has shown that it is in fact a result of a breakdown in health education, health promotion, and health care. Over half of medical school deans and students report that graduates are “not competent” to treat people with ID.

PHOTOS PROVIDED BY SPECIAL OLYMPICS

PERSONAL BEST: The Special Olympics Samoa staff and volunteers prepare for events; Special Olympics Samoa and Special Olympics Uganda are both working to become recognized as Healthy Communities within Special Olympics, developing partnerships to help athletes like Liui’a and Joyce access healthcare and wellness opportunities year round in their own communities.

SPECIAL OLYMPICS HEALTH Special Olympics Healthy Communities create a network of care for Special Olympics athletes and others with ID. For many people with ID, access to health begins at Special Olympics events, where they are examined by trained health professionals who volunteer their time at Healthy Athletes. Healthy Athletes provides health screenings exams and health education at Special Olympics events. There are eight disciplines within Healthy Athletes, Fit Feet (podiatry), FUNfitness (physical therapy), Health Promotion (better health and wellbeing), Healthy Hearing (audiology), MedFest (sports physical exam), Special Olympics-Lions Clubs EP MAGAZINE EDITORS’ NOTE: Fans, athletes, coaches, families and supporters of Special Olympics can qualify for a free yearly digital subscription to EP Magazine by contacting us. Please click on: http://ep-magazine.com/so.php

International Opening Eyes (vision), Special Smiles (dental), and Strong Minds (emotional wellness). While clinical volunteers may not come in with a lot of experience working with people with ID, by the end of their clinical volunteer experience at Healthy Athletes, they will have received screening protocols and hands-on training for how to provide care for people with ID. In the past 20 years, more than 1.9 million free health screenings have been conducted in more than 130 countries. In the process, Special Olympics has become the largest global public health organization dedicated to serving people with ID.

CHANGING LIVES Special Olympics Samoa held their first Fit Feet event in April of this year. Liui’a Nikosiaki, a nine-year-old athlete from the village of Mutiatele Aleipata, attended and had his life changed. Liui’a was struck by a car when he was a child and had his left leg amputated. He was given crutches to walk, but as he grew older he outgrew them. His family began carrying him around town and to Special Olympics events. At Fit Feet, Liui’a was referred to a

local health services provider that did measurements for an artificial leg. They also provided him with new crutches to use until he receives his new artificial leg. For Liui’a and his mom this was a lifechanging moment. “I felt very happy and very proud” he said. “I am no longer going to need help and crutches since with my prosthetic leg I will be able to walk straight like other kids. I will be able to enjoy playing sports.” Special Olympics Samoa and Special Olympics Uganda are both working to become recognized as Healthy Communities within Special Olympics. This means that they are developing partnerships to help athletes, like Liui’a and Joyce – and others with ID – access healthcare and wellness opportunities year round in their own communities. There are currently more than 41 countries and 15 states in the United States in the Special Olympics Healthy Communities program. Via Healthy Communities, Special Olympics Programs have the flexibility to address the most urgent health needs in their communities with promising practices learned around the world: communi-

EXCEPTIONAL PARENT | EP Magazine • September 2017 55

ty awareness about the needs of people with ID, partnerships with community organizations and governments so people with ID are included in health and wellness programs, training for health care providers and workers about ID, and ensuring the accessibility of health services, programming, and resources. Through Special Olympics Healthy Communities, partnerships are transforming the access to health services and resources and enable people with ID to take control of their health. For example, through a partnership with Catholic Relief Services, at a school in Lilongwe, Malawi, students learned how to use a tippy tap, a low-cost way to allow people without plumbing to wash their hands effectively. Good hand

washing keeps diseases from spreading. In Connecticut, athlete Jackie Kennedy visited Special Smiles and was found to have an abscessed tooth. Because of a partnership Special Olympics Connecticut had built with the Department of Developmental Services, Jackie was able to be matched with a local dentist and received the urgent treatment she needed. And in North Carolina, community partnerships provide cooking, yoga, and Zumba classes tailored to meet the needs of Special Olympics athletes. In partnership with Arkansas Children’s Hospital, Arkansas Hunger Relief Alliance, University of ArkansasExtension and Arkansas’ Department of Education, physical education teachers,

“there is a role for everyone in the fight for inclusive health.”

56 September 2017 • EP Magazine | EXCEPTIONAL PARENT

school administrators and wellness committees were provided with and trained on an inclusive physical education and health curriculum. More than 430 people were trained in over 100 schools, ultimately reaching more than 14,000 students. There is a role for everyone in the fight for inclusive health. If you are a parent, visit your local Special Olympics Program and learn about health and wellness opportunities offered for people with ID. If you are a school administrator, take a look at what’s being offered in your schools – are people with ID being included and considered in curriculums and programs? Become an advocate for this population for health access and resources in your community. Joyce, Liui’a, and others are relying on you.• ABOUT THE AUTHORS: Kristin Hughes Srour, MBA, is Director, Global Community Health Programs, Special Olympics International and Onolee Stephan, MPH, Senior Manager, Global Community Health Programs, Special Olympics International.

ENHANCING LIVES OF PEOPLE WITH DOWN SYNDROME BY SARA HART WEIR, MS he National Down Syndrome Society (NDSS) is the leading human rights organization for individuals with Down syndrome. NDSS 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. Down syndrome is the most commonly occurring chromosomal condition. One in every 691 babies in the United States is born with Down syndrome. Down syndrome occurs when an individual has a full or partial extra copy of the 21st chromosome. This additional genetic material alters the course of development and causes the characteristics associated with Down syndrome. Down syndrome occurs in all races and economic levels. Today there are more than 400,000 people in the U.S. with Down syndrome. Since 1979, NDSS has helped the Down syndrome community make great strides in enhancing the lives of people with Down syndrome. As the national advocate for people

T

PHOTOS PROVIDED BY THE NATIONAL DOWN SYNDROME SOCIETY

DOWN BUT NOT OUT: “As the leading human rights organization for all individuals with Down syndrome, our job is to break down all barriers to allow people with Down syndrome to reach their full potential.”(Above) Sara Hart Weir meets with Macy Harnisch; (Below) Katelynn Daniel is ready for a new school year. with Down syndrome, our goal is to ensure that individuals with Down syndrome are fully participating members of our communities. NDSS provides state-of-the-art, comprehensive programming to all individuals with Down syndrome and their families with four main areas of programming which include: the National Advocacy & Policy Center, the National Inclusive Health & Sports Program featuring our National Buddy Walk Program, Community Outreach and Resources and Public Awareness. • ABOUT THE AUTHOR: Sara Hart Weir, MS, is president of the National Down Syndrome Society in New York City and Washington, DC.

EXCEPTIONAL PARENT | EP Magazine • September 2017 57

SOME WOUNDS LEAVE NO SCARS.

One in five Iraq and Afghanistan veterans suffers from post-traumatic stress disorder (PTSD) or major depression. Learn more or find out how you can help at woundedwarriorproject.org.

                                                          © 2011 Wounded Warrior Project® All Rights Reserved

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

MILITARY SECTION

MILITARY LIFE

60 RECOGNIZING THE SIGNS OF STRESS IN CHILDREN AFTER A DISASTER 62 PREPARING THE MILITARY FAMILY FOR THE JOURNEY By Angela Shaw PUZZLES & CAMO

66 THE BIG CHEESE By Shelly Huhtanen

MILITARY LIFE RECOGNIZING THE SIGNS OF STRESS IN CHILDREN AFTER A DISASTER Even the most well-adjusted children may experience stress following a disaster or traumatic event. It's important to understand how to recognize and address signs of stress so you can help your children cope with their feelings.

YOUNG CHILDREN Young children don't always have the words, or willingness, to express how they feel when something makes them feel insecure, scared or upset. After a traumatic event, you may notice the following signs of stress in your child: • Irritability • Excessive crying • Acting out parts of the event or disaster • Difficulty sleeping or nightmares • Lack of emotional expression • Regressive behaviors, such as thumb-sucking or bedwetting

SCHOOL-AGE CHILDREN AND TEENAGERS ended questions. Pay close attention to your child's words, School-age children and teenagers may have a better undergestures and expressions when she or he responds. standing of what's happening, and may appear to be in control • Be aware of your own reactions. Children may be unsettled of themselves during an actual crisis. However, they can still by a parent's strong reaction to a traumatic event or disasexperience post-disaster stress. Such emotions may be ter. When discussing the event among other adults, be careexpressed in the following ways: ful not to say anything that may be disturbing for children • Preoccupation with the event or disaster to hear. • Withdrawal from friends or favorite activities • Limit media exposure. Try to shield • Sleep problems, headaches or nausea young children from graphic details and • Inability to concentrate at school pictures on the internet, on TV and in • Guilt or depression over what has hapMilitary OneSource other media. You may not be able to keep pened can help you with further older children and teenagers from seeing • Risk-taking behaviors resources and connect you with disturbing words or pictures, but you can • Fear of leaving home free, confidential non-medical read or watch and discuss the media covcounseling. Military and family life erage with them. HOW YOU CAN HELP counselors are also available at If stress begins to interfere with your There are a number of things you can do your installation’s Military and child's routines, relationships or wellto help your children handle stress after a Family Support Center. being, it may be time to seek professional traumatic event. Try the following: www.militaryonesource.mil help. You know your child best. If you are • Get back to a normal routine as soon as concerned, get help right away from a propossible. If your child's daily routine has fessional such as your pediatrician, an been interrupted, let him or her know adolescent medicine specialist or a counthat the disruption is only temporary. selor. If your child is in a state of crisis, you • Provide extra physical reassurance. can contact the Military Crisis Line 24 Hugging or sitting close to read a book or hours a day (1-800-273-8255 and Press 1). play a game can help restore a younger You can also start a conversation via child's sense of safety. online chat or text (838255).• • Be available to talk with and comfort your child. Initiate conversations with open– Military One Source

EXTRA

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U.S. MILITARY H

PREPARING THE MILITARY FAMILY FOR THE JOURNEY STREAMLINING THE SCHOOL ENTRY PROCESS WITHIN THE SPECIAL EDUCATION LANDSCAPE BY ANGELA SHAW

The changing life-style of the military family may seem adventurous to their civilian counterparts, but those who choose this career and life path face a degree of challenge to sustain synchronization of their dual roles of protecting and serving the individuals of our nation, together with caring for the people in their own family. One such instance is relative to the mobility involved in a military life. Military families are on the move an average of every 2 to 4 years. Navigating the tides of such consistent change often serves to build strength and resilience, but it also requires a mindful approach for parents as they prepare for relocation. common thread within the military parent psyche is to structure their children’s lives in a manner that will encourage and enhance determination, perseverance, and resilience as they acclimate and integrate within everchanging environments. For parents who need to consider children with special needs, school moves can be even more challenging, due to a wide array of procedural differences across the nation. Navigating the transition process for students who have Individualized Education Programs (IEP) in place is eased through charting the course with some focused steps in preparation for new-school registration, even prior to your Permanent Change of Station (PCS) orders.

A

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READY

Create an education binder for your child and hand-carry this essential portfolio with you when you move. Organize your child’s documents from immunization records to IEP documents. The binder is a valuable tool in supporting appropriate placement and services for your child, as they transition from school to school. As documents are obtained, separate, categorize, and organize them into chronological order (with most current on top). Numbering each document and making a chronological list, to serve as a Table of Contents, can be included to support growth of the binder, as well as accessibility and understanding for the reader. In order to remain proactive in your always-imminent departures and arrivals, connect with the attendance/registration clerk at your current and future sites. These folks are most upto-date on education code and registration procedures. Krystal Hall, an attendance and registration clerk within the Snowline Joint Unified School District in CA, is a wealth of information for parents and children new to the school. Like many front office school personnel, Mrs. Hall wears various hats at her site. In Hall’s case, she assists in coordinating Positive Behavioral Interventions & Supports (PBIS) efforts at the school, which dovetails nicely with her role and the families she serves. PBIS is schoolwide approach to assist school personnel in adopting and organizing evidence based practices (EBP) to include interventions into an integrated continuum, in order to enhance academic and social behavioral outcomes for ALL students (www.pbis.org). Because of her specialization within the PBIS team, coupled with her knowledge of attendance and registration, Hall is mindful as she considers beneficial practices to support students during transitional times of their lives. She

H U.S. MILITARY

MOVING IN THE RIGHT DIRECTION: Military families are on the move an average of every 2 to 4 years. Navigating the tides of such consistent change often serves to build strength and resilience, but it also requires a mindful approach for parents as they prepare for relocation. advises that in addition to immunization records, parents should have on-hand a copy of their most recent IEP document and, if applicable, behavior support plan (BSP) and health plan, in order to avoid possible lag time that may occur between exiting district and entering district, as back to school dates vary across districts. By providing paperwork that might otherwise be delayed, opportunity for a smoother transition with appropriate services and placement will occur. Some things that should be included in your child’s education binder include, as applicable:

PREPARing fOR ThE jOuRnEy: TiP 1 Teacher newsletters and/or websites provide opportunities to discover the culture and curricular expectations of the new classroom and school. Ask your child’s teacher if he or she has a website or past or present newsletters that you can review.

• Individualized Education Program (IEP) documents, including addendums. • Behavior Support Plans (BSP) • Health Plans • Medication instructions and releases (if provided to student at school) • Standardized evaluations, including psychoeducational, speech/language, occupational therapy, behavior, etc. • Progress Toward Goals reports • General Education Grade reports • Work samples • Test scores (District and State) • Teacher communications • Transcripts (for secondary students) • Immunization records • Birth certificate

SET

Prior to moving, find out as much as possible about district and/or state registration guidelines. Hall, who has been in the business of school attendance and registration for more than 10 years, notes that registration, document release, and timelines for release of information vary widely across the nation. Once the attending school is determined, EXCEPTIONAL PARENT | EP Magazine • September 2017 63

U.S. MILITARY H scout it out. Many schools have limited office hours during the summer, which is the peak PCS season; therefore initial contact may need to be to the district office. Some ways to get set for the process of registration and attendance, which will help prepare for the academic and social aspects of the school, include: • Call the district or the school site to determine specific dates, place and requirements for registration. • Check to see if a new student orientation or back to school event is scheduled. • Drive by the school or visit the campus if it is open. Open up a discussion with your child about the similarities and differences between the old school(s) and the new one. (Playground equipment, landscaping, number of buildings, etc.). PLAN OF ACTION: Visit the district and school websites to review the • Take a virtual tour. Visit the district and school upcoming calendar and schedule of events. Mark minimum days, websites: holidays, and special events on your family calendar. n Read the mission statements and leadership letters. Discuss these communications as a family. where are the stops? Are there fees associated with bus n Review the upcoming calendar and schedule of events. services? n Review the parent handbook. Is there a dress code? Can Mark minimum days, holidays, and special events on your family calendar. Discuss and plan for the events. children bring toys to school? What is the homework n Share website pictures of the school site, principal, policy? n Check to see if there is a newsletter or other information teachers, and librarian and/or school events. n Determine if special programs are available for tutoring, from the Parent Teacher Association (PTA) or Parent Teacher Organization (PTO). Do they sell school spirit after or before school programs, breakfast or lunch proitems, such as tee shirts, caps, or notebooks? When will grams, music and choir, etc. n Review the transportation link. Are there buses? If so, the membership drive occur?

THE IEP AND YOUR FAMILY Today’s framework for special education hinges upon the passage of The Education for All handicapped Children Act, signed into law by President ford in 1975. This law is currently known as the Individuals with Disabilities Education Act (IDEA). Through this legislation, children identified with a specific range of disabilities are afforded a free appropriate public education (FAPE) in the least restrictive environment (LRE) via the IEP. Special education is defined in IDEA as specially designed instruction to meet the unique needs of a child with disabilities. The individualized instruction mandated through IDEA, requires that instruction and teaching techniques be supported through specifically trained special educators, in order to meet the student’s unique needs and provide some educational benefit. The IEP is a binding document that notes school’s commitment of special education and related services to be provided

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by the school district. During the annual IEP meeting, parents gain information about their student’s progress, present levels of performance, and proposed new goals moving forward. This IEP signifies the end of one IEP and the beginning of a new IEP. IDEA 2004 provides for students with an IEP, who are in transition to include: • THE REGULATION OF THE TRANSMITTAL OF RECORDS: This section states that the new school will take steps to promptly obtain the child’s records, to include IEP, supporting documents, and records that relate to the provision of special education and related services. • TRANSFER WITHIN THE SAME STATE: Provision of a free appropriate public education (FAPE), to include services comparable to those described in the previously held IEP, in consultation with the parents, until such time as

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With all of the preparation work completed, parents can head to the school registration point with confidence. Once time and place of the process is determined, provision of appropriate documents to the registration clerk can commence in an organized and streamlined manner. Some things before you head over to the site include: • Make it fun! Plan for a picnic or an ice cream cone outing afterward. • Just like when you go grocery shopping, be sure no one leaves the house hungry. Low blood sugar can cause confusion and short tempers in the best of us. • Inquire whether copies of your child’s documents will be made

PREPARing fOR ThE jOuRnEy: TiP 2 After obtaining records from the school system, separate the documents (psychological evaluations, IEPs, grade reports, etc.) into groups before securing the pages in a three ring binder with tabbed dividers for each section. It is recommended that the education binder travel with you as you register and whenever you have an IEP meeting, in order to provide on-thespot information, as well as provide a ready place for new documents.

at the point of contact, or whether you should have an extra copy on hand at registration. • Do you need to have copies of utility bills or rental agreement to provide proof of residency? • Be sure that you have your identification. • Have a list of your approved contacts and their contact information. • It is always helpful to have your own blue or black ink pen, just in case there is a crowd. With the paperwork streamlined, families can focus upon the adventure and fun of discovering the treasures of their new hometown. Visit the school, connect with new neighbors, and discover local parks and libraries. Explore neighboring stores and malls for back-to-school ideas and local trends. ABOUT THE AUTHOR: Angela Shaw is a special educator in So. California. She synthesizes her diverse education and experience to collaborate with families and staff to promote success and encourage the students in her care to be life-long learners. Shaw’s publishing focus is upon special education topics to include articles: “How to Find the Best Educational Services for your Child with ASD” (August 2016, Autism Parenting Magazine) and “7 Things a Child with Dyslexia Wishes You Knew” (March 2017, Exceptional Parent Magazine). Shaw earned her MAs in Special Education and School Counseling from Azusa Pacific University. Her son-in-law is an active duty U.S. Coast Guard. Shaw and her husband spend much of their free time adventuring to various PCS locations and enjoying every possible minute with their son-in-law, daughter, and baby grandson.

References Individuals with Disabilities Education Improvement Act of 2004 www.pbis.org

the school district adopts the previous IEP or develops, adopts, and implements a new IEP that is consistent with Federal and State law. • TRANSFER OUTSIDE STATE: Provision of a free appropriate public education (FAPE), to include services comparable to those described in the previously held IEP, in consultation with the child’s parents—until such time as the district conducts an evaluation, if determined to be necessary, and develops a new IEP, if appropriate, that is consistent with Federal and State law. Although a transfer IEP meeting is in your child’s imminent future, it is always a great idea to touch base with your child’s special education teacher, prior to the formal IEP meeting. Typically, teachers are contract-

ed a few days before the first day of school, for in-services and preparation of the school year. Ask the attendance/registration clerk or school principal if you can email the special education teacher. Although the teacher will be busy with preparations, he or she will be pleased to hear from you about the arrival of your student and the fact that you have documents in hand to share. Work samples and recent report cards are very helpful for the new teacher to be able to peruse to prepare an appropriate program for your child. Additionally, present levels of performance (PLOP) can more readily be ascertained and considered when writing the updated IEP goals. This essential data, which is organized within your educational binder, is beneficial for your child, as he/she transitions to the new program.

EXCEPTIONAL PARENT | EP Magazine • September 2017 65

PUZZLES & CAMO

SHELLY HUHTANEN

The Big Cheese Broden is the one that the smaller kids watch and look up to now… He’s the one who plops in the chair in the morning and yawns because he knows he’ll tackle this long day of ABA, just like any other day.

It was the first day of school at the Autism Learning Center. Broden knew the drill as he slid out of his car seat and grabbed his drink. I followed behind him carrying his backpack as he used all of his strength to pull open the front door to the lobby. He set his drink on the windowsill, exactly in the same place as every morning, and plopped in the chair to wait for his tutor. He let out a loud yawn not really caring that it was his first day of school at his ABA clinic. To him, it was just another day of hard work. To him, it was just another morning back to the grind. His tutor popped in the lobby right after Broden yawned and sat down next to us to see how our evening went. As I started to talk about how well he ate dinner the night before, the door opened to the front lobby and a little boy walked through. He looked around the same age as Broden did when he started ABA therapy. His mother had his bag in tow and greeted his tutor. You could tell they were new to the whole ABA thing. He was so young and it was difficult for him to let go of his mom’s hand. Eventually, the tutor asked his mom to follow him into the center to get him situated and to help put both of them at ease. As I watched the little boy apprehensively walk behind the tutor, I got a little emotional. I looked over at Broden’s tutor and reminded her that Broden started therapy at 26 months old. He was still wearing little onesie jumpers with soft Robeez shoes. On his first day of clinic, the clinical director walked around the center and told all the tutors to watch for Broden because she was concerned

he would get knocked down by the bigger kids playing. My son was the youngest and smallest child at the clinic that day. Broden’s tutor, Hillary, interjected, “Look at him now. He plays Red Light Green Light with the kids, runs around and jumps.” I nodded my head in agreement. I told her that when Broden started therapy in Kansas, he couldn’t jump on the trampoline so his tutor would hold him in her arms and sing to him as she jumped. I remembered feeling so scared leaving him there for hours, but had to trust the staff that they would care for him like I would. Hillary stopped me and then said, “Well, now he jumps on the trampoline for the smaller children so they can sit and bounce from all of Broden’s momentum.” In almost 10 years, he went from a child who couldn’t jump on his own, to a child who helps smaller children jump. I knew what Hillary meant. Broden had come so far, and instead of focusing on what he couldn’t do, it was really nice to sit and talk about all the things he was doing now. It put his progress in perspective. I needed to hear that. A few days later, yet again, a new child popped through the door. I turned around and saw Broden in his chair with his feet up. Yes, another morning of work was on the horizon. He knew it. Kailey, his tutor for the morning, filed in behind us and didn’t let Broden rest for too long: “C’mon Broden. Grab your backpack and say bye to your mom. We’ve got a lot to

66 September 2017 • EP MAGAZINE | EXCEPTIONAL PARENT

cover today.” He gave me a kiss and said he loved me as he jogged do the door with his backpack and drink in his hand. I looked down at the little boy again and smiled. He was so small and I knew that he would be on the cusp of learning and growing more than I could ever imagine. I was about to walk out the door and two more tutors came into the lobby. Both of them worked with Broden, either currently or before when he was younger. While I walked out they could see me smiling at the little guy starting his ABA journey and one of the tutors smiled and giggled. She said, “I know. He’s so young, but did you know I work with another young boy in the clinic that cries every time Broden leaves the room?” He wants to be around him so much that he gets upset if Broden leaves. I laughed as I slipped out of the waiting room and into the parking lot. The tutors’ stories this past week hit me all at once as I walked out towards my car. Broden isn’t the little boy in Robeez shoes whom everyone has to be gentle around. He is now the big kid doing the grind. He is the big kid on the block. Broden is the one that the smaller kids watch and look up to now. He’s the big cheese. He’s the one who plops in the chair in the morning and yawns because he knows he’ll tackle this long day of ABA, just like any other day. My son is growing up.•

PUZZLES & CAMO Shelley Huhtanen is an Army wife with two children, one with autism, whose husband is currently stationed at Fort Benning, GA. She is an autism advocate and currently the parent liaison for the Academy for Exceptional Learners.

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