HOW THE ACA AFFECTS CHILDREN WITH SPECIAL NEEDS and

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PLUS: United StateS Military Section THIS MONTH:

GENE EDITING and the FUTURE OF GENETIC CONDITIONS AUGUST 2016

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SUICIDE PREVENTION among RETURNING TROOPS DR. STEPHEN DEFELICE INTERVIEW, PART II:

A CAN-DO WAY TO REDUCE HEALTHCARE COSTS PLUS, AN EP EXCLUSIVE:

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HOW THE ACA AFFECTS CHILDREN WITH SPECIAL NEEDS and THEIR FAMILIES

CONTENTS EP Health

Care Issue

AUGUST 2016 VOLUME 46 ISSUE 8

20 26

HEALTHCARE GENETIC ALLIANCE

17 GENE EDITING AND THE FUTURE OF GENETIC CONDITIONS By Blaine Elias

20 HOW THE ACA AFFECTS CHILDREN WITH SPECIAL NEEDS AND THEIR FAMILIES By Lauren Agoratus, M.A.

PART II OF A SERIES

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22 PROMINENT PHYSICIAN PROPOSES A CAN-DO WAY TO REDUCE HEALTHCARE COSTS - BY FINDING CURES Interview of Stephen L. DeFelice, M.D. by Joseph M. Valenzano Jr.

26 MY FAMILY’S JOURNEY WITH DUCHENNE MUSCULAR DYSTROPHY By Betty Vertin

30 PEACE OF MIND By Michell Boudreau

FEATURES BOOK REVIEW

35 TEARS OF MY ANGEL By Joseph M. Valenzano Jr. and Patricia A. Valenzano

38 PROTECTING YOUR CHILD’S IEP FROM THE NATION’S TESTING CRAZE By Dr. Michael Berg, ED.D.

42 NEVER GIVE UP

42

By Kimberlee Rutan McCafferty

44 INTRODUCTION OF ABLE ACCOUNTS IN SOME STATES THIS SUMMER 46 IT TAKES A WHOLE VILLAGE By Eolane

ON OUR COVER Dr Stephen DeFelice and the Foundation for Innovation in Medicine propose that Congress enact the Doctornaut Act, which would permit physicians to more freely volunteer for clinical studies than non-physician volunteers. Story on page 22. Photo provided by Dr. Stephen DeFelice.

eparent.com | EP MAGAZINE • August 2016 1

CONTENTS

AUGUST 2016 VOLUME 46 ISSUE 8

DEPARTMENTS ANCORA IMPARO

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YOU DON’T KNOW JACK By Rick Rader, MD

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WHAT’S HAPPENING SIBLING TIES

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INCONTINENCE By Paige Talhelm

10 NEW PRODUCTS AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE AND DENTISTRY

12 NEED FOR HEALTH BEHAVIOR MODELS FOR YOUR CHILD WITH DISABILITIES By H. Barry Waldman DDS, MPH, PHD and Steven P. Perlman DDS, MSCD, DHL (Hon),

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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

HEALTHY CHOICES, HEALTHY LIFESTYLES

16 STAYING HEALTHY AND WELL WHEN YOU ARE AWY FROM HOME By Barbara B. Mintz, MS, RD

56 PRODUCTS & SERVICES

MILITARY SECTION 50 SUICIDE PREVENTION AMONG RETURNING TROOPS By Jennifer Woodworth, PSY.D. MILITARY LIFE

53 AN OVERVIEW OF SPECIAL EDUCATION

50 SUICIDE PREVENTION AMONG AMONG RETURNING TROOPS By Jennifer Woodworth, PSY.D. MILITARY LIFE

53 AN OVERVIEW OF SPECIAL EDUCATION PUZZLES & CAMO

PUZZLES & CAMO

54 MOVING FORWARD

54 MOVING FORWARD By Shelly L. Huhtanen

By Shelly L. Huhtanen

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

2 August 2016 • EP MAGAZINE | eparent.com

Information and Support for the Special Needs Community

VOLUME 46 ISSUE 8 Editor-In-Chief

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ESTABLISHED 1971 Rick Rader, MD

Contributing Writer/Editor

Vanessa B. Ira

President, CEO & Publisher

Joseph M. Valenzano, Jr.

Production, Ad Traffic Manager Human Resources Manager Director of Circulation & Business Development Art Direction & Design Resource Guide Specialist Information Technology Expert

Stefanie Valenzano Lois Keegan Hamilton Maher FoxPrint Dennis Dusevic Ron Peterson

Exceptional Parent magazine was founded in 1971 by Maxwell J. Schleifer, PhD Subscriber Services Exceptional Parent 26 Bradley Beach Way, Waretown, NJ 08758

Customer Service/New Orders Email: [email protected] or toll free: 800-372-7368 ext. 234

Publishing & Editorial Office 26 Bradley Beach Way, Waretown, NJ 08758 Fax (201) 746-0179

Exceptional Parent (ISSN 0046-9157) is published monthly 11 times per year plus the special January Annual Resource Guide by ep World, Inc., dba Exceptional Parent Magazine, 26 Bradley Beach Way, Waretown, NJ 08758. Internet address: http://www.eparent.com. Digital access: www.eparentdigital.com. All rights reserved. Copyright ©2016 by ep World, Inc. Exceptional Parent™ is a registered trademark of ep World, Inc. Postmaster: Please send address changes to: Exceptional Parent, 26 Bradley Beach Way, Waretown, NJ 08758. Any applicable periodical postage paid at Johnstown, PA and additional mailing offices (USPS 557-810). Basic annual subscription rate is $19.95 per year for EP Digital. Annual subscription rate for Canada is also $19.95 (U.S. funds only); all other foreign countries $24.95 (U.S. funds only). Subscriber Service: Direct all inquiries & address changes to: Exceptional Parent, 26 Bradley Beach Way, Waretown, NJ 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 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

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

Gary Liguori Fellow of the American College of Sports Medicine (ACSM); Department Head of Health and Human Performance, University of Tennessee Chattanooga, Chattanooga, TN

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

Joan Earle Hahn, DNSc, RN, CS, CDDN Assistant Adjunct Prof., Univ. of California, Los Angeles School of Nursing; Past President, Developmental Disabilities Nurses Association

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

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

Jerry Hulick, GA Emeritus Massachusetts Mutual Life insurance Company, Special Care Planning Mary M. Keller, ED.D President and CEO, Military Child Education Coalition, Harker Heights, TX Bernard A. Krooks, ESQ Littman Krooks LLP, New York, NY

Howard Shane, PhD Director, Communications Enhancement Center, Children’s Hospital, Boston, MA

Frank J. Murphy President and CEO, EP Foundation for Education, Atlanta, GA

Jo Waldron President and Co-founder of the Able Kids Foundation and Partner at Brain Basket, LLC, Fort Collins, CO

Kathryn O’Hara, RN Epilepsy Nurse Clinician, Nurse Manager Child Neurology, Division of Child Neurology, Virginia Commonwealth University, Richmond, VA John M. Pellock, MD Prof. and Chair, Division of Child Neurology, Virginia Commonwealth Univ., Vice President of the American Epilepsy Society (AES)

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

Barbara Mintz MS, RD Vice President of Healthy Living & Community Engagement, Barnabas Health, West Orange, NJ

Endorsed & AL ME DICI NE

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

David Hirsch, MD Medical Director at UnitedHealthcare

Esther Schleifer, MSW Clinical Social Worker, Boston, MA

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

Matthew Holder, MD President of the American Academy of Developmental Medicine & Dentistry; Global Medical Advisor for Special Olympics International, Louisville, KY

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

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

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

eparent.com | EP MAGAZINE • August 2016 3

ANCORA IMPARO

RICK RADER, MD

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You Don’t Know Jack Dr. Jack Dillenberg, the founding Dean of an innovative incubated dental school in Mesa, Arizona, insisted his students had to have demonstrated a commitment to community service and an appreciation for collaborative approaches to comprehensive dental healthcare.

“You don’t know Jack” is a popular expression that infers that you don’t really know what you’re talking about. “Jack” represents everyman, the common man and the average man. If you think any of those describe “Jack,” then “you don’t know Jack.” Dr. Jack Dillenberg is the founding Dean of an innovative incubated dental school in Mesa, Arizona. The Arizona School of Dentistry and Oral Health (ASDOH) is the only dental school in the country that has “oral health” in its name. The school is a reflection of Dr. Dillenberg who, just 14 years ago (a nanosecond in the lifeline of a dental school), was given the proverbial napkin to doodle what a dental school could look like if you never heard, “you can’t do that.” Jack hitched his impressive credentials, and a distinguished career in public health,

health policy, underserved populations and healthcare innovation, to a plot of land in Arizona and challenged the naysayers. Jack attracted and recruited a cadre of like-minded oral health innovators to form his faculty and administration. He then set out to attract a most unusual prototypical body of students. It was taken for granted that the ASDOH students would have to have the “goods”— bright, accomplished, studious, hands-on-learners. But Jack insisted they had to have demonstrated a commitment to community service and an appreciation for collaborative approaches to comprehensive dental healthcare. In 14 years, the students have become disciples of Jack and the faculty. They have distinguished themselves in every nook and

cranny in the dental universe. They consistently excel on national board exams, obtain the most prestigious residency slots and have the highest number of graduates devoting their careers to public health, underserved populations and patients with special needs. The students have a high allegiance to Jack and their professors and have become passionate ambassadors to the mission of ASDOH. I was honored to be invited to preside over this year’s (Class of 2020) White Coat Ceremony. To the best of my knowledge, I was the first physician to officiate at the White Coat Ceremony at a dental school. Jack wanted me to serve as a reminder that dynamic collaborative healthcare is a true interdisciplinary endeavor.

DEALT A JACK OF HEARTS: (Left) Dr Jack Dillenberg; (Below) The front and back of a keepsake card that was placed in the pockets of students’ white coats before the ASDOH Class of 2020 White Coat Ceremony, typically conducted at the start of the third year when students begin their clinical patient encounters.

4 August 2016 • EP MAGAZINE | eparent.com

POCKET CARD IMAGE COURTESY OF DENNIS WILKES

WHAT’S HAPPENING

Historically the White Coat Ceremony is conducted at the start of the students’ third year, the time when the student begins their clinical patient encounters. Jack (as in “you don’t know Jack”) appreciated that the metamorphosis of a clinician needs to begin on “day one,” and that is exactly when the White Coat Ceremony is scheduled. To illustrate how ASDOH embodies the “right stuff;” the first lecture on the first day of classes is devoted to ethics. This isn’t done to get it “over with.” Jack and his colleagues teach ethics at every opportunity, at every applicable chairside case and over the

Jack and his colleagues teach ethics at every opportunity, at every applicable chairside case and over the course of the four-year curriculum. course of the four-year curriculum. While most medical and dental schools teach ethics on a Friday afternoon (“Lunch and Learn” and a pizza), the ASDOH students are infused with ethical thinking, ethical judgment and ethical practice. I was thrilled to address the 75 new students, their families and the faculty on the first day they received their starched white coats. Following my remarks I announced that in a pocket of every white coat I had placed a gift, a keepsake to help them “stay the course” in the years to come. I hope the cards become yellow, frayed, dog-eared, soiled and creased from repeated readings. I think with this class they will. Now you know Jack.• 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

DISABILITY COMMUNITY ACT INTRODUCED IN US CONGRESS

The American Network of Community Options and Resources (ANCOR) together with Autism Speaks, the Autism Society, Lutheran Services in America Disability Network (LSA-DN), and United Cerebral Palsy (UCP) are proud to announce the introduction of the Disability Community Act (H.R. 5902) in the United States Congress. On July 14, 2016, Congressman Paul Tonko (D-NY) led the introduction of this bipartisan legislation in the House of Representatives with Congressman Steve Stivers (R-OH). The bill is also supported by the leaders of the Congressional Bipartisan Disabilities Caucus, Congressman Gregg Harper (R-MS) and Congressman Jim Langevin (D-RI). The Disability Community Act of 2016 (H.R. 5902) is the legislative solution offered by supporters of the Save Our Services (S.O.S.) Campaign: Funding the Future of Disability Services. The S.O.S. Campaign was launched in response to concerns around implementation of the new Department of Labor overtime rules without additional funding in place for Medicaid-funded community living programs for people with intellectual and developmental disabilities. The bill, which includes a bipartisan provision to pay for its

SAVING SERVICES: Providers of vital community services to individuals with intellectual and developmental disabilities will receive help from Congress in the face of recent changes to federal law. projected cost, would provide three years of temporary additional funding to ensure that the programs and the individuals served by them are protected. In addition, the bill continues the efforts of Rosa’s Law enacted in 2010 by ensuring the use of proper terminology for people with intellectual and developmental disabilities in legislative language while removing references to “mental retardation.” “The Disability Community Act is more than just a temporary funding bill that we have seen in years past,” said Barbara Merrill, CEO of ANCOR. “It is a unified statement by Congress that we support people with disabilities and the services that provide them access to their greater community. Now is the time for us to reach out to our Members of Congress and ask them to join our Congressional champions in supporting their noble efforts to save our services.” H.R. 5902 has been referred to the House Energy and Commerce Committee and can be considered when Congress returns from recess on September 6. eparent.com | EP MAGAZINE • August 2016 5

CELEBRATING THE 17TH ANNIVERSARY OF

THE OLMSTEAD DECISION Recently, the Department of Justice (DOJ), and the Administration for Community Living (ACL) issued press releases celebrating the 17th Anniversary of the Olmstead decision. VOR shares their view that there is much to celebrate in opening doors to community living for people with intellectual and developmental disabilities (I/DD) who are able and wish to take advantage of such opportunities. Unfortunately, their ideological preoccupation with one key part of Olmstead, community integration, at the expense of the other key part, choice, has reduced options for all people with I/DD. This crimped and, VOR would submit, inaccurate application of the plain language of Olmstead has done significant harm to many of our most disabled citizens. By insisting that all people with I/DD live in the community, the DOJ and ACL are treating people with I/DD as a monolithic group, not as the individuals they are. DOJ and ACL are substituting the wishes of the government for that of the person with I/DD or, where relevant, the legal guardian. While their policies have opened doors for the less severely disabled, they have closed important doors for the more severely disabled. Many of these individuals have lifelong needs that require a very high level of care, the kind often found only in public and private Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/IID). DOJ and ACL are pursuing this agenda in the name of the ADA and Olmstead, but that is not what the ADA and Olmstead call for. Both the statute and the Supreme Court case embody the best values of American society — nondiscrimination and choice. All of our civil rights laws contain both elements. Civil rights laws do not tell people where they must live or work. They guarantee individuals are not denied opportunities based on a particular factor, and they expand choices for individuals who have suffered discrimination. In sharp contrast, DOJ and ACL are using federal dollars to bring lawsuits and promote policies that needlessly and dangerous eliminate important options – ICFs/IID, sheltered workshops and facility-based day programs – that many of our most disabled individuals rely on and prefer over small community residences. In pursuing its one-size-fits-all ideology, DOJ and ACL are ignoring the vital rights of choice embodied in the ADA itself: As the Court stated in Olmstead: “We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings . . . . Nor is there any federal requirement that community-based treatment be imposed on patients who do not desire it. Olmstead v. L.C., 527 U.S. 581, 601-602 (1999). In fact, the Court specifically incorporated the right of choice in the second prong of its holding: “(b) the transfer from institutional care to a less restrictive setting is not opposed by the affected individual,” Olmstead, at 587. 6 August 2016 • EP MAGAZINE | eparent.com

Even DOJ and ACL’s concept of what constitutes the most integrated setting contradicts the view of Justice Ginsburg: “[For some individuals, no placement outside the institution may ever be appropriate. ‘Some individuals, whether mentally retarded or mentally ill, are not prepared at particular times - perhaps in the short run, perhaps in the long run - for the risks and exposure of the less protective environment of community settings;’ for these persons, ‘institutional settings are needed and must remain available.’”... Each disabled person is entitled to treatment in the most integrated setting possible for that person – recognizing on a case-by-case basis, that setting may be an institution” Olmstead, at 605. Not only are DOJ and ACL ignoring the plain language of governing law and decision, they are ignoring the harmful effects of their policies. Journalists have time and again documented the high rates of abuse and mortality for our most disabled citizens who have been forced out of congregate care facilities into unprepared communities.1 Federal agencies should stop dictating the lives of the severely disabled, and instead, join hands with the community of individuals with I/DD to ensure that all I AM I SAID: The Olmstead people with I/DD receive qualdecision has allowed thousands of individuals with disabilities to ity services and supports live their lives integrated with wherever they choose to friends and people who truly reside. know and love them. The ADA and Olmstead are the beacons for providing more opportunities for people with I/DD, but they do not dictate one-size-fits-all solutions. Individual choice among the widest possible range of quality living and occupational options is what is necessary to realize the goals of the ADA and Olmstead. VOR supports the full reading of Olmstead, making individual choice of services paramount and ensuring a full range of living and work options in order to meet the spectrum of needs of this very diverse population. VOR is a national organization that advocates for high quality residential and work options and human rights for people with intellectual and developmental disabilities. Established in 1983, VOR is a 501(c)(3) non-profit organization, governed by a volunteer board of directors and funded solely by dues and donations. VOR receives no government support. 1. VOR Abuse and Neglect Document: http://www.vor.net/get-help/more-resources/item/abuse-andneglect-document

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FOR TALKING WITH YOUR CHILD WITH SPECIAL NEEDS ABOUT TRAGEDY

ith recent tragedies in the news, many children, including those challenged with special needs, are exposed to trauma through the media and in conversations. The Episcopal Center for Children (ECC), a nonprofit school serving children with special needs ages 5-14 in the Washington, DC area, offers some advice on how to talk with your child about tragedy. “Children hear information from other children and from the Use age appropriate language. Talk with your child about the tragedy in a way that is appropriate for his or her age. Elementary schoolers may have questions about their own safety and security. Older children may want more information about the cause of the tragedy or want to talk about how it could be prevented. Share what is appropriate for your child. Be mindful about the personality of your child. Your child may be a six year old who laughs at monsters in movies and can handle the truth about bad guys being a reality of life. Or your child may be a 10 year old who cannot handle scary movies, and gets emotional when people are hurt. When answering your child’s questions about tragic news events, let the unique personality of your child be your guide.

activities around them. Your child will pick up information very quickly after a traumatic event happens,” said Dodd White, president and CEO of ECC. “It’s important for parents and guardians to set a tone of openness and support with their children, and to reassure children that they are safe.” Dodd and the staff at ECC offer the following tips and advice, adapted from the Mayo Clinic, SpecialNeeds.com, and the National Child Traumatic Stress Network.

Limit media exposure. Constant exposure to coverage of a tragedy can heighten anxiety. Do not allow young children to repeatedly see or hear news coverage of a tragedy. Even if a young child is engrossed in play, he or she is likely aware of what you are watching on television – and can become confused or upset.

trauma, he or she may be at greater risk of a severe reaction to a new tragic event. Watch your child closely for any changes in mood or behavior.

Avoid placing blame. Be careful not to blame a cultural, racial or ethnic group, or people who have mental illnesses. Maintain your family routines. Continue your family’s usual routines for waking up, dinnertime, and bedtime. The familiarity of these routines will help your child.

Do not dismiss or minimize your child’s feelings. Your child might worry that someone will come and hurt him or her. Rather than saying she’s being silly or that such things will never happen, help your child put things in perspective. Say how rare such things would be, and explain how unlikely they are. Address each concern.

Get physical. Exercise can relieve stress and help you and your child get a better perspective.

Promote self-care. Encourage your child to drink enough water, eat regularly, rest, and Encourage the expression of feelings. exercise, and follow this advice for yourself too! Explain that it’s OK to be upset. Let your child write about or draw what he or she is feeling. Spend extra time together. Spend a little Physical activity might serve as an outlet for Let your child know it is ok to talk to you more time reading to your child. Take a few feelings or frustration. If your child is acting out, about the tragedy. Spend time talking with extra moments when tucking him or her in at explain that there are other ways of coping. your child. You might not know all the night. If your child is having trouble sleeping, answers and it is OK to say that. At the same allow him or her to sleep with a light on or to Do something for those affected by the time, don’t push them to talk if they don’t sleep in your room for a short time. Extra hugs tragedy. Focusing on what can be done to want to. Let them know you are available and cuddles are good too. All of these actions help others, can help children feel less anxious when they are ready. can improve your child’s sense of security. and more secure. Consider ways that you and your child can help victims and their families. Be calm. Your child will look to you for cues Watch for signs of stress and anxiety in about how to react. It’s OK for children to see your child. Look for hyperactivity, irritability, Get help if needed. If your child is still adults sad or crying, but consider excusregression, stomach aches/ headaches, and exhibiting signs of anxiety after a week or ing yourself if you are experiencing separation anxiety. Take steps to relieve two. Seek out a school counselor, therapist, a intense emotions. stress and anxiety. member of the clergy, or any other spiritual leader or mental health professional. Reassure your child about his or her Pay close attention to your child if he own safety. Point out factors that or she has emotional problems, learn- ABOUT THE EPISCOPAL CENTER FOR CHILDREN ensure your child’s immediate safeing challenges, is going through The Episcopal Center for Children (Center) is a ty and the safety of the commumajor changes at home, or has expenonprofit, nondenominational school and treatnity. Review your family’s rienced trauma in the past. Children ment program for children contending with emoplans for responding to a can merge a new trauma and it can tional challenges from the greater Washington, crisis. Assure your heighten their anxieties. If your child D.C. metropolitan area. More information is child that he or she has suffered a loss, is facing special available at eccofdc.org and Twitter @ECCofDC. is safe and loved. challenges, or been exposed to other

eparent.com | EP MAGAZINE • August 2016 7

SIBLING TIES

PAIGE TALHELM

Incontinence Sammy’s incontinence isn’t a problem just because of the hassle; it is also about his dignity.

Toilet training is something my brother will never overcome. Yes, I said it. Negative I know, but it’s true. I would love more than anything to be proven wrong. For 18 years, my brother has worn a diaper. For 18 years, he has peed and pooped his pants. My theory for why he isn’t toilet trained? He doesn’t care. The normal discomfort we all feel if we are incontinent doesn’t exist to him. If you’re used to something, why work to change it if it doesn’t bother you? It takes way more work for my brother to request the bathroom, pull down his pants, try to use the toilet, wipe, and pull up his pants. Did you ever think of how many steps there are to using the bathroom? Instead of all that, he could keep doing what he’s in the middle of doing and have someone else change him and do all work. No effort. No interruption to his music or chill time. Even if you could teach all of those steps – or try and reinforce them – how do you teach what to do when you feel the sensation to use the bathroom? We have no idea when someone has to go, there’s no way to. There is no universal sign that signals a person has to go to the bathroom. Even if you think dancing around or fidgeting in a seat signals needing to use the bathroom – not everyone does it, and sometimes that may be too late if you are trying to teach the skill of using the bathroom. You can’t create a learning opportunity with a feeling. You can’t make someone feel like they have to go to the bathroom whenever you want. And you 8 August 2016 • EP MAGAZINE | eparent.com

can’t teach someone that the feeling to go pee or poop means you should “ask for the bathroom” when you have no idea when they are feeling like that. With my brother, they’ve tried everything. Going to the bathroom every 15 minutes, changing his diaper and clothes in the bathroom; cutting him off from chips so that he only gets them if he appropriately uses the toilet; “potty parties”; placing a sensor in his diaper so we know when he’s urinating; spending his entire school day on the toilet. All of this just to find a baseline of how much and when he pees. Just to try and teach what the toilet is used for. Just to try and make the bathroom the best thing in the world… Have any of these worked? No. He holds it for hours and hours (regardless of the amount of liquids we give him). And even though chips are his most favorite thing in the world, it wasn’t enough reinforcement for him to want to use the toilet. And as soon as he isn’t in the bathroom – BOOM – he pees everywhere. There’s no telling when it is going to happen. And because he holds it for hours, it goes through his diaper and soaks his clothes. It doesn’t stop there. If he is on his bed or a couch, those get soaked

too – or he ends up standing in a pool of urine. This creates a cleanup that takes many hours. Not only must Sammy be changed and sometimes bathed depending on how much and the kind of an accident he has – the couch or bed must be stripped. Sheets, mattress covers, pillows, couch covers, couch cushions must be washed, changed, and dried. It isn’t surprising anymore if I walk into my house and there isn’t a single cushion on the couch. There are often times when we have no clean sheets because Sammy pees and soaks them faster than they can be cleaned. I don’t think any of us resent Sammy for his incontinence. We absolutely don’t. We resent the fact of how much of a pain it is. And it is definitely something that drives us all crazy. Like his having autism isn’t enough? Now we have to deal with cleaning up pee 13 times a day? Not to mention, it can be sort of controlled in the household. But what if we go to the grocery store? A friend’s house? A restaurant? A long car ride? If he pees in the middle of the cereal aisle, regardless of how much is in our cart – we stop and have to go home. And then there are the stares that come from all of the other customers around us. We rarely go to other people’s houses with Sammy. Not because we don’t want to bring him along – but because we don’t want him to have an accident on our friend’s furniture and risk ruining their stuff. Yes, we should be friends with people who understand, but you’re supposed to go to a friend’s and have fun. Instead, we are on edge the entire time and checking his diaper to make sure he isn’t the slightest bit wet. If he pees in a restaurant, we can scramble and clean as much as we want with the tiny napkins but no matter what, we’re going to have to have that embarrassing

and uncomfortable conversation with the waiter to tell them what we just did to their establishment. And a car ride? How on earth do you clean a car seat? It can’t be removed like the couch cushions. A small,enclosed, uncleanable space is the worst spot for an accident, where the smells can just linger. The incontinence changes the way we live life, especially for my mom. When we go somewhere, many changes of clothes are packed. If he is going to stay overnight – which rarely happens – many sets of sheets are packed. My mom always makes sure she uses only our sheets wherever we are staying because she doesn’t want to risk ruining someone else’s. We always have to be ready to leave, even if we aren’t finished with what we’re doing wherever we are. Sammy stayed the night at my house a few weeks ago and he was barely there 24 hours. He came with three suitcases. Two were full of things to clean with,

sheets, extra clothes, etc. I spent the whole time double checking his diaper and making sure he wasn’t getting anything wet. I even took him to the bathroom every hour. Did he pee once? No. Some would think this is great, but how can someone hold pee for almost a full day? And how crazy is it that so many things were packed for less than a full day?

own urine – wouldn’t you want to just get out of there? He can’t! Not to mention, using the bathroom is an everyday thing that humans do. That is basically being taken away from him because for some reason his autism doesn’t let him learn the skill. Aren’t the million other things he has going on enough? • SIBLING TIES

think incontinence is one of the most infuriating parts of what my brother goes through because of autism. Sammy’s incontinence isn’t a problem just because of the hassle; it is also about his dignity. Even if he doesn’t care if he is wet or soiled, does he really need more things for people to stare at him and judge him? Thinking of how mortifying it was when I was little, when I would wet the bed or had an accident in public, how do we know that he doesn’t feel that way? How horrible would it be to be standing in a pile of your

I

Paige Talhelm is 24 years old and living in Baltimore, MD. She is a graduate of Towson University with a Bachelor of Arts degree in Psychology and is now working towards her Master’s degree in Education of Autism and Pervasive Disorders at Johns Hopkins. She is also working with individuals with severe self-injurious and aggressive behavior on the Neurobehavioral Inpatient Unit at Kennedy Krieger Institute. She hopes to one day create a program for continued education, job searching, life skills, etc. for individuals with Autism over the age of 21. Please continue to read about her life as Sammy’s sister on her blog: www.sammyssister.com

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

ANUPA A NUP PA

A ATTORNEY, TTORNEY, PASSIONA PASSIONATE, TE, DEDICATED, DEDICATED, OPTIMIST, ADVOCATE, A DVOCATE WORLD WORLD TRAVELER, TR RAVELER CONFIDENT CONFIDENT

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eparent.com | EP MAGAZINE • August 2016 9

NEW PRODUCTS SPECIAL TOMATO HEIGHT RIGHT CHAIR Special Tomato Height Right Chair is a seating system developed for children and teens with mild to moderate physical involvement. The chair is designed to grow with the child (starting at 6 months) and offers secure positioning support with a sleek, modern design. It can be used at home, school, therapy, or at daycare. It’s an easy to care for adaptive seating solution that offers a height and depth adjustable seat and footplate to allow growth for the child. Comes with 3-point pelvic belt, and easily adjustable seat plate and foot plate. Made from natural hardwood. Weight Capacity: 250lb.

FUN2GO TANDEM The Fun2Go Tandem is a side-by-side, three-wheel tandem tricycle in which the users ride tandem and sit beside each other, designed for use by organizations, institutions, and individuals who want to provide social contact and movement for a person with a disability by cycling outdoors. One person steers, and both can pedal. Riders can easily adjust the seat to the required dis-

tance with a lever. There is also an optional electric engine to assist a user cycle under any circumstances. Other customizations are available upon request to the manufacturer.

SPECIAL TOMATO Telephone: 1-866-529-8407 Web: www.specialtomato.com Email: [email protected]

VAN RAAM Web: www.vanraam.com Email: [email protected]

SENSORY ULTRAVIOLET PLAY MAT The Sensory Ultraviolet Play Mat is a sensory product that emits a bright glowing effect when used with a UV light. Even under everyday white light, the colors dazzle as children play and run their hands along the ridges. Woven from flexible PVC, these smooth rainbow-colored play mats stimulate the visual senses. Available in four different sizes, the mats also feature bound edges and are strong enough to withstand the most rough-andtumble play. Multiple colors available. UV light not included; must be purchased separately.

ESPECIAL NEEDS, LLC 1850 Borman Court St. Louis, MO 63146 Telephone: 1.877.664.4565 Fax: 800-664-4534 Web: www.especialneeds.com

ABLEDATA The ABLEDATA database of assistive technology and rehabilitation equipment contains information on more than 30,000 products for persons of all ages who have a physical, cognitive, or sensory disability. Products are chosen for these pages by the ABLEDATA staff based on their specific applicability to or design for children who have disabilities. ABLEDATA, operated by 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 August 2016 • EP MAGAZINE | eparent.com

NEW PRODUCTS STAGES MATH IPAD APP The Stages Math iPad App curriculum is designed for assessment and instruction for students with cognitive and intellectual disabilities. Activities improve students' number sense and correlate with math standards for typically developing students in pre-K to 3rd grade. Instruction and assessment activities are provided in nine key mathematical skill areas. Each skill area has learning supports with customizable settings. For example, the user can select activities like counting money; academic goals like the coins and bills presented; and student access methods such as mouse or

switch use. Detailed information such as questions asked, student responses, and time spent are reported. The program accumulates student performance over time, which helps to build meaningful student portfolios. ATTAINMENT COMPANY INC 504 Commerce Parkway Verona, WI 53593 Phone: 1-800-327-4269 Fax: 1-800-942-3865 Web: www.attainmentcompany.com

SUMMER FUN TOY TIME! TEXTURED CAROUSEL BUSY BOX The Textured Carousel Busy Box is a cause and effect teaching device that increases visual attention, tactile awareness, color recognition, and auditory development. Six specially textured pads reward the user with different sensory stimulation: vibration, three melodies, a popcorn ball popper, and multicolored lights. The textured carousel busy box spins on a lazy Susan base. All pads respond to the slightest touch. Dimensions: 12 inches Diameter x 6½ inches Height. Power: Requires 6 AA Batteries. ENABLING DEVICES 50 Broadway Hawthorne, NY 10532 Telephone: 800-832-8697 Fax: 914-747-3480 Web: www.enablingdevices.com

CHARLEY CHAMELEON Charley Chameleon is designed for individuals with sensory processing disorders, limited upper and lower extremity strength, and coordination associated with cerebral palsy, muscular dystrophy, and Angelman’s syndrome. It offers three different light and sound options. When the user presses the switch once, rain forest sounds play while soft lights transition gradually from one color to the next. When the user presses the switch a second time, tropical tunes play. When the user presses the switch for the third time, it will activate the light. The fourth switch activation turns Charley Chameleon off. This toy also works without a switch. Charley has an automatic shut off after 45 minutes. Takes 3 AA batteries. CLOUD B 150 W. Walnut St., Ste. 100 Gardena, CA 90248 Web: www.cloudb.com

SEE AND LEARN PUTTING SOUNDS TOGETHER KIT See and Learn Putting Sounds Together is designed to help parents, teachers, and therapists support regular speech practice in helping children with Down syndrome who are beginning to say consonant sounds in imitation, and in babble (from 9 to 12 months), as well as older children who are starting to combine sounds. See and Learn Putting Sounds Together may also be useful for older children who are making word attempts, but have very unclear speech. The book consists of activities that encourage attention, listening, and production of early vowel-consonant combinations and simple symbolic sounds. DOWN SYNDROME STORE USA Telephone: (949) 757-1877 Web: https://store.dseusa.org/ Email: [email protected]

eparent.com | EP MAGAZINE • August 2016 11

AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE & DENTISTRY

Need for Health Behavior Models for Your Child with Disabilities The facts are that these health behavior prospects are genuine possibilities as youngsters with disabilities reach their adult years. Repeated surveys do substantiate these consequences. BY H. BARRY WALDMAN DDS, MPH, PHD AND STEVEN P. PERLMAN DDS, MSCD, DHL (HON)

“Obesity, binge drinking and smoking – you’ve got to be kidding. My child is only 6, 10, or 12 years old. How could you think of that? He/she has enough difficulties with disabilities to even consider those eventualities.” THE NUMBERS YOU USUALLY SEE The numbers you usually see • 56 million individuals with disabilities • 38 million individuals with severe disabilities • 171 thousand children less than five years with disabilities living in the communities of the country (includes only children with hearing and vision disabilities) • 2.9 million children 5 to 17 years with disabilities living in the community 1,2 If you are interested in determining the number of children with disabilities in your area, it is relatively easy to use the convenient computer search engines and turn up reports on the distribution of individuals with disabilities by number and proportion in Congressional Districts and states and by various demo-

graphic groups, including age, gender and race/ethnicity.1,2 For example, in 2012: Among children less than five years of age with disabilities (includes only children with hearing and vision disabilities) • The number ranged from about 90 in Rhode Island to 19,400 in Texas. • The proportion ranged from about 0.1% in Hawaii to 1.9% in Delaware. (see Table 1) Among children 5 to 17 years of age with disabilities • The number ranged from about 4,300 in Alaska to 278,800 in Texas. • The proportion ranged from about 3.2% in Alaska to 9.2% in Maine and 10% in Puerto Rico. (see Table 2)

WHAT THE FUTURE MAY HOLD While it is important to maintain an awareness of the current numbers and proportion of youngsters with disabilities in our communities and the nation as a whole, it is equally (if not more important) to consider the future circumstances in which these youngsters may (will?) live. Rightfully, the concern should be directed to the potential economics of adults with disabilities (in 2010, the median monthly earning by individuals between 21 and

AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE AND DENTISTRY The American Academy of Developmental Medicine and Dentistry (AADMD) was organized in 2002 to provide a forum for healthcare professionals who provide clinical care to people with neurodevelopmental disorders and intellectual disabilities (ND/ID). The mission of the organization is to improve the quality and assure the parity of healthcare for individuals with neurodevelopmental disorders and intellectual disabilities throughout the lifespan. 12 August 2016 • EP MAGAZINE | eparent.com

FACING THE PROBLEM: In 2012, among persons 18 years and over in the United States, 11.8% of individuals with disabilities were reported to have been involved in binge drinking.

64 years with a disability was $1,961; compared to $2,724 for those with no disabilities). During the same year, among adults 18-64 years 29.2% of persons with disabilities and 13.6% of persons with no disabilities lived in poverty.1 Equally important, are considerations of the impact of the youngster’s health behaviors as he or she grows to adult years, specifically: obesity, binge drinking and smoking. Obesity: a term that means that an individual weighs at least 20% more than what is considered a normal weight for that person’s height. It makes an individual more likely to have a series of conditions including: • Heart disease and stroke • High blood pressure • Diabetes • Some cancers • Gallbladder disease and gallstones • Osteoarthritis • Gout • Breathing problems, such as sleep apnea (when a person stops breathing for short episodes during sleep) and asthma.3 Not everyone who is obese has all of those problems. The risk rises if you have a family history of one of those conditions.3 In 2012 in the United States, among persons 18 years and over, 39.1% of individuals with disabilities were reported to be obese; compared to 24.5% of individuals with no disabilities. • The reported proportion of obese individuals with disabilities ranged from 33.2% in Massachusetts to 45.2% in Louisiana. • The reported proportion of obese individuals with no disabilities ranged from 18.1% in Colorado to 31.8% in Mississippi. (see Table 3)

Table 1. U.S. & states with the greatest and smallest number and percent of children aged less than 5 years with disabilities living in community settings: 2012 1 Number United States

Percent

170,700

High Texas California New York Florida Illinois

0.8% High

19,400 18,200 10,300 7,000 6,600

Low Idaho Wyoming Montana Hawaii Rhode Island

Delaware West Virginia North Dakota Louisiana Oregon

1.9 1.6 1.5 1.4 1.4

Low 470 210 160 130 90

Iowa Idaho Nebraska Montana Rhode Island Hawaii

0.4 0.4 0.4 0.3 0.2 0.1

Note: Numbers are rounded

Binge drinking: The definition of binge drinking in the United States is the consumption of five or more drinks in about a two hour period by men – or four or more drinks in the same period by women. Binge drinking is associated with many health problems, including: • Unintentional injuries (e.g., car crashes, falls, burns, drowning) eparent.com | EP MAGAZINE • August 2016 13

Table 2. U.S. & states with the greatest and smallest number and percent of children ages 5 to 17 years with disabilities living in community settings: 2012 1 Number United States

Percent

2,917,700

High

5.4%

Table 4. U.S. & states with the greatest and smallest percent of obese persons 18 years and over with and no disabilities: 2012 1 Percent binge drinking persons with disabilities United States

High

High

Puerto Rico 10.5 Maine 9.2 Kentucky 7.9 District of Columbia 7.7 Arizona 7.2

Illinois Montana Dist. of Columbia Wisconsin Massachusetts

Low

Low

Low

Vermont 6,300 District of Columbia 5,400 Wyoming 4,900 North Dakota 4,600 Alaska 4,300

Utah Colorado North Dakota Hawaii California Alaska

Texas California Florida New York Illinois

278,800 264,100 152,400 145,100 102,900

4.3 4.3 4.2 4.0 3.9 3.2

Note: Numbers are rounded

Table 3. U.S. & states with the greatest and smallest percent of obese persons 18 years and over with and no disabilities: 2012 1 Percent obese persons with disabilities United States

39.1%

High Louisiana West Virginia Illinois Arkansas Mississippi

24.5% High

45.2 45.2 43.5 43.0 42.9

Low New Mexico Arizona District of Columbia Hawaii Massachusetts

Percent obese persons with no disabilities

Mississippi Arkansas Louisiana West Virginia Oklahoma

31.8 31.3 31.2 28.6 28.4

Low 34.3 33.5 32.6 33.2 33.2

Massachusetts New York Vermont District of Columbia Colorado

20.3 20.3 20.3 19.3 18.1

• Intentional injuries (e.g., firearm injuries, sexual assault, domestic violence) • Alcohol poisoning • Sexually transmitted diseases • Unintended pregnancy • Children born with Fetal Alcohol Spectrum Disorders • High blood pressure, stroke, and other cardiovascular diseases • Liver disease • Neurological damage • Sexual dysfunction, and • Poor control of diabetes.4 14 August 2016 • EP MAGAZINE | eparent.com

North Carolina Utah Mississippi West Virginia Tennessee

Percent binge drinking persons with no disabilities

11.8%

18.5% High

16.7 16.0 15.5 15.0 14.8

Wisconsin North Dakota Dist. of Columbia Iowa Nebraska

28.0 26.4 25.6 24.1 24.1

Low 8.0 7.7 7.4 7.2 6.0

Alabama Tennessee Arkansas Utah West Virginia

14.1 13.1 12.5 12.1 11.5

According to national surveys • One in six U.S. adults binge drinks about four times a month, consuming about eight drinks per binge. • While binge drinking is more common among young adults aged 18–34 years, binge drinkers aged 65 years and older report binge drinking more often—an average of five to six times a month. • The prevalence of binge drinking among men is twice the prevalence among women. • Binge drinkers are 14 times more likely to report alcoholimpaired driving than non-binge drinkers.4 In 2012 in the United States, among persons 18 years and over, 11.8% of individuals with disabilities were reported to have been involved in binge drinking; compared to 18.5% of individuals with no disabilities.1 • The reported proportion of individuals with disabilities who had been involved in binge drinking ranged from 6.0% in Tennessee to 16.7% in Illinois. • The reported proportion of individuals with no disabilities who had been involved in binge drinking ranged from 11.5% in West Virginia to 28.0% in Wisconsin. (see Table 4) Smoking: Smoking is the leading preventable cause of death in the United States. • Cigarette smoking causes more than 480,000 deaths each year in the United States. This is about one in five deaths. • Smoking causes more deaths each year than all of the following combined o Human immunodeficiency virus (HIV) o Illegal drug use o Alcohol use o Motor vehicle injuries o Firearm-related incidents 5 In 2012 in the United States, among persons 18 years and over, 26.0% of individuals with disabilities were reported to be smokers; compared to 16.9% of individuals with no disabilities.1

Table 5. U.S. & states with the greatest and smallest percent of persons 18 years and over with and without disabilities who smoke: 2012 1 Percent of persons with disabilities who smoke United States

26.0%

High Kentucky Arkansas West Virginia Tennessee Ohio

16.9% High

36.9 34.4 33.5 33.3 32.5

Low New Hampshire Arizona Idaho Hawaii Utah

Percent of persons with no disabilities who smoke

West Virginia Kentucky Louisiana Tennessee Indiana

25.8 25.0 22.8 22.2 22.1

Low 23.1 22.5 21.8 18.9 14.7

Vermont Oregon New York Hawaii Utah

14.5 14.3 14.2 13.7 9.5

• The reported proportion of individuals with disabilities who are smokers ranged from 14.7% in Utah to 36.9% in Kentucky. • The reported proportion of individuals with no disabilities who are smokers ranged from 9.5% in Utah to 25.8% in West Virginia. (see Table 5)

NOT MY CHILD The facts are that these health behavior prospects are genuine possibilities as youngsters with disabilities reach their adult years. Repeated surveys do substantiate these consequences. We seek to ensure the future of children with disabilities with education, health insurance coverage, employment opportunities, guardianships, trust fund arrangements for financial security and any number of other measures. But in our zeal to establish these necessary safe guards, do we also adequately consider the long term health guidance measures to instill in our youngsters the potential realities that all too often adults with disabilities succumb to the consequences of obesity, binge drinking and smoking? • 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, Private pediatric dentistry practice – Lynn MA.

References 1. Disability Compendium. Annual disability statistics compendium. Wed site: http://wwwdisabilitycompendium.org. Accessed July 26, 2014. 2. Census Bureau. American Community Survey http://factfinder2.census.gov/faces/nav/jsf/pages/index.xhtml. Accessed July 26, 2014. 3. Web MD. Health risks linked to obesity. Web site: http://www.webmd.com/cholesterol-management/obesity-health-risks Accessed August 6, 2014. 4. Centers for Disease Control and Prevention. Fact sheets – binge drinking. Web site: http://www.cdc.gov/alcohol/fact-sheets/binge-drinking.htm Accessed August 6, 2014. 5. Centers for Disease Control and Prevention. Fact sheets - Health Effects of Cigarette Smoking. Web site: http://www.cdc.gov/tobacco/data_statistics/fact_sheets/health_effects/effects_cig_smoking Accessed August 6, 2014.

eparent.com | EP MAGAZINE • August 2016 15

HEALTHY CHOICES, HEALTHY LIFESTYLES

BARBARA B. MINTZ, MS, RD

Staying Healthy and Well When You are Away From Home Stay active when you are traveling! It is a good way to stay on your fitness track and it can help you connect with the local culture.

It’s the time of year when people are traveling more. Whether you are traveling for business or pleasure, it can be difficult to keep to healthy exercise and diet behaviors. It’s easy to fall into the trap of high calorie meals, very little exercise and less sleep because you are not in your usual routine, and you are busy at your job, or enjoying your vacation. There are easy and affordable ways to stay focused on your health when you travel. Here are a few hints… Eat healthy when you are away from home. Do your research! Knowing where the healthy stores and restaurants are will help you stay focused and keep you on track. Make a list of healthy items to include in a shopping list if you are staying in a efficiency hotel . Find the restaurants in the neighborhood and look up the menus. And remember you don’t have to deprive yourself. Try new foods and dishes, especially if you are in a new country or region. If you do have access to a refrigerator, keep healthy snacks and breakfast foods available. This may help you save money and avoid as well avoid unhealthy, processed foods Before you go be sure make sure you check out the rules of you hotel and the airports you will be using. Also be cautious about traveling with fresh fruits, vegetables or meat and dairy products as there are many restrictions about bringing these into other countries. You will need to declare any food products you may be carrying when you arrive. It is also a good idea to pack some protein bars or nuts in your suitcase just in case you can’t bring them into your destination. If you have allergies or food sensitivities, 16 August 2016 • EP MAGAZINE | eparent.com

planning ahead and doing your research is particularly important. Bring a card that lists your dietary needs in the local language. You can also bring a dictionary and mark the pages that have healthy food choices that you want and the ones you don’t want. This will help you better communicate your needs and prevent errors if you are not proficient in the language. The last thing you want is to have to communicate symptoms of an allergic reaction in a language that is not your own! Stay active when you are traveling! It is a good way to stay on your fitness track and it can help you connect with the local culture. Mingling with the community that you are traveling in is a great way to learn new things and stay inspired. If you are a gym rat, find a health club that will allows free day passes or has promotions for out-of-towners. If you don’t have access to a fitness center you can still stay in shape. You can get in a good workout just about anywhere by combining things like pushups, sit-ups, squats, and sprints! You can also bring some resistance bands or a jump rope if you don’t have access to a gym. You can also go for a walk or jog through town climb the stairs of your hotel or take a walk in a local park. Walking daily is a good way to exercise and sight see. Also, remember to pack gym gear so that you have no excuse not to exercise. Keep hydrated. It is important to stay well-hydrated when you are traveling. It keeps you feeling your best and helps keep you alert. It also helps fight hunger. The first symptom of thirst is hunger and many peo-

ple eat when all they really needed was a glass of water. Flying can be very dehydrating and add to fatigue and jet lag. Pack an empty water bottle while flying that you can fill up once you’ve passed through security. If you are headed somewhere hotter or more humid, or at a higher altitude than your usual climate, make sure to drink extra water. Prevent Jet lag. You can diminish the symptoms of jet lag by staying hydrated while you fly. When you get to your destination, try to get at least seven or eight hours of sleep every night while away. If you are adjusting to a new time zone, try to stay awake on the first day until your usual bedtime. It will help you get a full nights rest when you finally do get into bed for the night. Adequate sleep helps strengthen your immune system and help you restore and recover for the next day. You want to feel you best when you are on a business trip or on vacation. Don’t forget to pack any medications you take normally. This includes vitamins and supplements as well. It is always a good idea to keep a list of these items in your suitcase and wallet in case of an accident. Also, a small first aid kit in your suitcase is always a smart thing to add to your packing list. Whether you are traveling alone, with friends or with your family, health and wellness begins with just a little planning and research. Have a safe and healthy trip! •

HEALTHY CHOICES, HEALTHY LIFESTYLES Barbara Mintz, MS, RD, Vice President of Healthy Living and Community Engagement for Barnabas Health, New Jersey.

GENETIC ALLIANCE

EP Health

Care Issue

GENE EDITING AND THE FUTURE OF GENETIC CONDITIONS BY BLAINE ELIAS enome-engineered humans are not with us yet. But this is no longer science fiction,” says Jennifer Doudna, speaking at a London TED Talk in September. Doudna, a biologist and science researcher at the University of California, Berkeley, addresses an international audience in order to discuss her latest discovery. If genomic engineering “Genome-engineered animals and plants are hapbecomes accessible to pening right now,” ordinary clinics, let’s Doudna continues. “And hope our future actions this puts in front of all of include everyone in the us a huge responsibility: conversation. to consider carefully both the unintended consequences as well as the intended impacts of a scientific breakthrough.” This scientific breakthrough is none other than the latest technological tool in gene editing: CRISPR Cas-9. Before diving into a discussion about CRISPR Cas-9, it may be useful to see some basic definitions. Genetic engineering refers to technology that is able to change the genes (structures in the body that contain a person’s DNA) in a living organism. Gene editing, a type of genetic engineering, is when DNA is placed in or taken out of a living organism with the help of enzymes or molecules. CRISPR Cas-9 (CRISPR is short for Clustered Regularly Interspaced Short Palindromic Repeats; Cas-9 is a protein in the body) is considered to be one of the fastest and most efficient ways to edit genes. The work of CRISPR Cas-9 can be organized in a few steps.

“G

HOW CRISPR CAS-9 EDITS A HUMAN GENE 1. A sequence in a DNA strand changes because it was made that way or because it was later changed by the environment in which a person lives. Genetic editing can be used to replace that changed sequence with a new, unchanged sequence. 2. Scientists attach the Cas-9 protein onto a RNA sequence that looks identical to the changed DNA sequence in a cell. 3. Because the changed DNA sequence and the RNA sequence match, the RNA sequence guides the Cas-9 protein to the spot where the changed DNA sequence is located. [Imagine the RNA to be a tour guide, who is taking tourist, the Cas-9 protein, on a trip throughout different cities of cells] 4. The Cas-9 protein cuts the DNA strand at this spot of where the sequence changed, similarly to how a pair of scissors cuts a piece of paper. After this, the Cas-9 protein and the RNA leave. 5. Scientists usually insert a new DNA sequence where the Cas-9 protein cut the DNA strand. 6. At the end, a human gene is officially changed and edited! (see Fig. 1) Researchers have investigated the potential for CRISPR Cas-9 to address a variety of topics. Among the many possibilities, CRISPR technology has been predicted to create engineered mosquitos that are resistant to the Malaria parasite or the Zika virus, produce more efficient pharmaceutical drugs, and make crops more resistant to different diseases in order to increase agricultural production. Beneath this predictive hubbub lies one of the greatest scientific debates of this generation: the ethics of gene editing humans and human embryos. It is important to understand the different types of genetic editing that this technology could introduce. CRISPR Cas-9 can be used

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. eparent.com | EP MAGAZINE • August 2016 17

to edit two kinds of human cells: somatic approach to treating and curing genetic who has a daughter with albinism. Weiss conditions? Clinicians, researchers, and thinks that if he participated in prenatal and germ line cells. A somatic cell is any cell in our body that ordinary families each have differing view- genomic engineering, he would have regretis responsible for making bones, skin, and points on CRISPR Cas-9 and what its pro- ted it. Hayden writes, “And he [Ethan Weiss] believes that if he had had the option to edit blood. This means that any change to a gression might mean for our generation. Though there are blurred lines in this blindness out of Ruthie’s [Ethan Weiss’s somatic cell does not pass down to a perdebate, the general divide lies between sup- daughter] genes before she was born, he son’s children. You can think of somatic mutations as porters and opponents of gene editing. and his wife would have jumped at the non-communicable illnesses, or illnesses Individuals who support its advancements chance. But now he thinks that would have that aren’t contagious. These types of ill- argue that genetic engineering could been a mistake: doing so might have erased nesses only affect those who have it, and decrease the incidences of some dangerous some of the things that make Ruthie special don’t physically influence those who don’t. diseases. Diseases such as Tay-Sachs dis- — her determination, for instance.” Larry Bram counteracts this by claiming In the scientific community and beyond, ease and cystic fibrosis have significant controversy tends to arise around discus- genetic influences and could be treated or that his daughter’s disability does not define sions of genomic engineering on human cured with CRISPR Cas-9 for both humans her. Bram is the Senior Vice President for and their future offspring. Additionally, sup- Innovation and Program Development at germ line cells. Germ line cells include the reproductive porters state that this technology could Easter Seals Serving DC | MD | VA; a nonprofit organization that focuses cells of the sperm and the egg, on providing medical and social so children can inherit mutaservices to people with special tions of germ line cells. needs. He is also the father to a For example, if a person has a 22-year old woman born with BRCA1/2 gene germ line mutapolymicrogyria and agenesis of tion, which increases a person’s the corpus callosum. Though likelihood of contracting breast there may be genetic links found and ovarian cancer, that perin the future, his daughter’s conson’s children (and their childition is neither genetic nor dren’s children) will at least have hereditary. This disease impairs one copy of this mutated gene. It her physical skills, complicating may be useful to compare germ her ability to walk and causing line mutations to contagious illher to be in chronic pain. In nesses, which can be passed response to Weiss’s argument, from person to person. Bram states, “My daughter has How will CRISPR Cas-9 completely changed my life, as address human genetic condiboth a human being and profestions in the future? There are sional. But you know what, if several key ways in which she had been born without disCRISPR Cas-9 could impact the abilities, she would have world of genetic conditions. changed my life in different, but CRISPR Cas-9 could be a simple equally profound, ways.” way for researchers to provide Nevertheless, opponents somatic gene editing and thera- FIG 1: How CRISPR Cas-9 Works (Roach); Genetic editing can be used to replace a changed DNA sequence with a new, unchanged argue that gene editing may py to clinical patients with sinsequence. have some unforeseeable congle-gene conditions. According to the American Medical Association, somatic increase the lifespan of humans by helping sequences, which could lead to further gene therapy is the only type of genetic us evolve faster to respond to natural disas- medical complications for humans. The biggest argument from this side of the editing that is allowed to be performed on ters such as global warming. On the other hand, opponents dispute debate is the fear that genomic engineering humans and can be solely offered to participants in clinical trials. Though scientific that genomic engineering counteracts nat- provides families with an outlet to superfiinstitutions, such as the American ural human population dynamics. They cially “customize” their future offspring. Association for the Advancement of Science, reason that difficult genetic conditions like The idea is that genetic engineering could have pronounced humans ethically unready sickle-cell anemia are needed to prevent be a tool not only used for prevention and and unsuitable to modify human germ line overpopulation. Opposition, especially treatment of genetic conditions, but also for cells, some researchers believe it won’t be skeptical parents of children with genetic the artificial enhancement of unborn conditions, wonder if gene editing would infants. The same technology that could be long before this practice is approved. These questions highlight important negatively influence their children’s origi- used to remedy genetic disorders could also issues, but what about the general question: nality or character. Deriving from Erika allow parents to provide their child with is it ethical to edit the human genome? Check Hayden’s article in science journal, supposed “desirable” traits, like being tall. With all this discussion, what do people More specifically, is gene editing an ethical Nature, Hayden follows father, Ethan Weiss, 18 August 2016 • EP MAGAZINE | eparent.com

with genetic disorders and their families have to say about the CRISPR tool? Where are their voices within this scientific debate? People affected by genetic diseases have been absent and unfortunately muted from the public discussion. According to Jackie Leach Scully, a professor of Social Ethics and Bioethics at Newcastle University, “When researchers focus on correcting genetic mutations, they may be overlooking the individuals’ personal experience of disability.” She, along with other advocates, have urged scientists and medical professionals involved in the CRISPR debate to provide people with disabilities with more of a say in how to approach genomic engineering utilizations. In accordance to Scully, Larry Bram desires for inclusion As we move along in the to be above and beyond. Bram contends that even progression of the voices within groups of CRISPR technology, people with special needs it is essential to keep may become unheard. He everyone’s best states, “It is important to interests in mind. have an expansive vision of what it means to live with a disability. Who do you picture when someone says ‘disability’? Down syndrome, spinal cord injury, Asperger syndrome, profound cognitive/intellectual disabilities? It really changes the conversation. When including the community, you need to make sure you include lots of voices in the community.” Patricia Lang is a Minnesota representative of Region 4 Midwest Genetics Collaborative (a coalition made up of seven states who strive to better health care access and genetic services) and the mother of a 19 year-old daughter, named Maddie, with metachromatic leukodystrophy. Metachromatic leukodystrophy is a genetic progressive condition (involves a mutation of the ARSA – a gene) that leads to an accumulation of fatty substances in areas of the central and peripheral nervous systems. Because of this accumulation, the casing around the axons (structures in the brain that send electric information to different parts of the body) becomes damaged, which leads to irregular muscle contractions and difficulties in walking, speaking and eating. According to Lang, “Maddie can no longer walk, talk or move herself from side to side in her bed. She cannot use her hands and must have 24-hour care. 100% of her feeding is through a feeding tube. She is intellectually on target and understands and communicates in several different ways.” When asked about the personal use of genomic engineering, Lang illustrated the struggle with picking a side in this debate. Lang explains, “There’s no answer that is right or wrong, that’s the one thing people need to know. I think it is what is right for you that you can live with, when it comes to genetic intervention.” Patricia Lang believes that gene editing could have several positive effects, such as eradicating the heritability of ovarian cancer and providing people with more chances at living a healthy life. Noting the financial strains parents commonly encounter when tending to their children’s medical needs, Lang addresses how each case is different for each family. “Some families can’t handle what other families can. And it’s really difficult,” Lang says. “I just know too many families that live this life and it’s a hard life.” When Larry Bram was asked if he would partake in fetal genomic engineering if he learned his child had a gene mutation for one of these conditions, Bram answers, “Yes, I would, absolutely.” Bram challenges opponents of CRISPR Cas-9, especially those who argue

that a person’s disability is a part of their identity, and who claim that any change to eliminate a certain disease disrupts human diversity. Bram argues that advocates for such ideas of neurodiversity tend to ignore the many ways in which a particular disease can affect someone. He highlights autism as an example. Bram exhibits the differences in autism spectrum disorder and how some affected individuals may be more severely influenced by their diagnosis than others. Bram says, “Are we looking out for those who can’t speak for themselves? It is the profoundly disabled that, unfortunately, aren’t fully integrated into society. The impacts on their lives and the lives of their families are profound.” He continues, “And if we could ease or prevent that, of course we would want to prevent that. At the very least, it should be their family’s choice.” hough both Bram and Lang recognize the benefits the CRISPR technology could provide, they are aware of how genomic engineering could be used for the wrong reasons. Bram understands that gene editing could be a scientific method that becomes abused. He commends Dr. Jennifer Doudna for acknowledging these risks and believes the use of gene editing should be limited to treating genetic disorders. On a similar note, Patricia Lang says, “If there’s an illness, like a catastrophic illness, I don’t have a problem with it [using genomic engineering].” Conversely, Lang considers that the way in which someone may use gene editing is not up for her to judge. What does the future entail for CRISPR Cas-9? What does CRISPR Cas-9 entail for those with genetic diseases and for their families? How will we make sure this technology isn’t brought into the wrong hands and is properly utilized? There is still long ways to go in the progression of the CRISPR technology. But as we move along in this process, it is essential to keep everyone’s best interests in mind. If genomic engineering becomes accessible to ordinary clinics, let’s hope our future actions include everyone in the conversation.•

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*The opinions of Larry Bram and Patricia Lang do not represent both of their employers’ official opinions and viewpoints on gene editing and/or CRISPR Cas-9. They personally held the opinions stated. ABOUT THE AUTHOR: Blaine Elias is a BioTrust intern at Genetic Alliance. BioTrust is about providing people with the proper tools to influence the health systems around them. She assists with work on PEER [Platform for Engaging Everyone Responsibly]; a registry that allows individuals to privately provide their health information to medical researchers, in order to better health care. Elias is a rising junior at Duke University in Durham, North Carolina. She is pursuing a double major in Public Policy Studies and Global Health, with a certificate in Information Science and Studies.

References “Gene Therapy.” Gene Therapy. American Medical Association, n.d. Web. 21 June 2016. Hamzelou, Jessica. “Let People Most Affected by Gene Editing Write CRISPR Rules.” New Scientist. Reed Business Information Ltd, 29 Apr. 2016. Web. 20 June 2016. Hayden, Erika Check. “Should You Edit Your Children’s Genes?” Nature 530.7591 (2016): 402-05. Web. 20 June 2016. Kukreja, Rinkesh. “Pros and Cons of Genetic Engineering.” Conserve Energy Future. Conserve Energy Future, 2015. Web. 20 June 2016. Lewis, Tanya. “Scientists May Soon Be Able to ‘Cut and Paste’ DNA to Cure Deadly Diseases and Design Perfect Babies.” Business Insider. Business Insider Inc., 19 Nov. 2015. Web. 21 June 2016. McClean, Phillip. “Germinal and Somatic Mutations.” Genes and Mutations. North Dakota State University, 1999. Web. 21 June 2016. Roach, Dylan. Editing a Gene Using the CRISPR/Cas9 Technique. Digital Image. Business Insider. Business Insider Inc., 19. Nov. 2015. Web. 21 June 2016. TED. “We Can Now Edit Our DNA. But, Let’s Do it Wisely.” Online video clip. YouTube. YouTube, 12 Nov. 2015. Web. 20 June 2016.

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How tHe ACA AffeCts CHildren witH speCiAl needs And tHeir fAmilies BY LAUREN AGORATUS, M.A.

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he Affordable Care Act (ACA) affects children with special needs and disabilities in many ways. This article provides an overview of some ACA-related topics relevant to children and youth with special health care needs (CYSHCN) and their families. It is based on a series of posts in the ACA blog published by the National Center for Family Professional Partnerships (NCFPP). The NCFPP is a project of Family Voices, operated through a cooperative agreement with the Maternal and Child Health Bureau of the Health Resources and Services Administration (HRSA), US Department of Health and Human Services. The goal of the NCFPP is to improve health care delivery and quality of life for all children with special health care needs and their families by supporting families to serve in leadership roles. Family Voices is a national nonprofit organization of and for families of CYSHCN which seeks to ensure that all children and youth with special needs receive family-centered, quality, timely, and appropriate care in a linguistically and culturally competent manner. Below are links to resources and information about some ACArelated issues of special interest to families of children and youth with special healthcare needs or disabilities.

ACCessibility issues The purchase of health insurance is made through a website, so families and people with disabilities need to be able to access and read the content of the website; for more information on accessibility go to: www.healthcare.gov/accessibility/. Families also need to have access to telephone and in-person assistance that may be needed to help them enroll. New regulations will require that health plans available through the website provide information on the physical accessibility of physician’s offices. People with disabilities may be eligible for Medicaid or Medicare and the Marketplace will determine that as well. 20 August 2016 • EP MAGAZINE | eparent.com

finding providers One challenge for families is finding out if their child’s doctors are in a health plan’s network. A new tool to allow parents to search and compare plans can be found at: www.healthcare.gov/see-plans/. It is important to note that even if a hospital is in-network, some of the professionals who provide care (e.g., anesthesiologists) may not be in-network. To avoid surprise medical bills, it is important for families to make sure that each provider who may provide care to their child in that hospital is in the plan’s network. Families should check with each of their child’s providers to see which plans they participate in. (Plans’ provider directories are not always accurate.) If families are using Medicaid, in some states, they may need to get an “out-of-state” authorization for care. Please note that even if providers don’t participate in Medicaid, when Medicaid is secondary, often it can be billed as out of network. In addition, families may be able to get reimbursed for out-of-state Medicaid formulary medications.

benefits To find out if their child’s medications, equipment, and other services are covered by a plan, families should check the “Summary of Benefits and Coverage” (SBC) for that plan. The SBC will lay out the services covered by that plan, the coinsurance or copays, and any limitations on the benefits. Every plan must use the same format for its SBC so that plans can easily be compared. For more information about, and a sample SBC, see www.healthcare.gov/health-care-law-protections/summary-of-benefits-andcoverage/.

mentAl HeAltH Under the ACA, one of the “essential health benefits” that plans must provide is “Mental health and substance use disorder services, including behavioral health treatment.” For more information,

go to: www.healthcare.gov/coverage/mental-health-substanceabuse-coverage/. The federal law requiring mental health “parity” (covering mental health on par with physical health) should make it easier for families to access mental health services.

pHysiCAl, oCCupAtionAl, And speeCH tHerApy Before the ACA, many insurance companies didn’t cover “developmental” therapies for children under the ACA, however, health plans must cover “rehabilitative and habilitative services and devices.” This means that services to help a child learn new skills (habilitative services), such as occupational, physical and speech therapies, must be included in health plan benefits, as well as rehabilitative services and devices to restore lost skills. Habilitative and rehabilitative therapies must be medically necessary and plans may still place limits on them (e.g., number of therapy sessions). However, habilitative services and devices may not have limits that are less favorable than limits for rehabilitative services and devices. Plan years beginning after January 1, 2017, must have separate limits on habilitative and rehabilitative services. (Another possible avenue for children to be eligible for therapy services may be through “related services” on their Individualized Education Program in school).

wellness / prevention Many preventive services, such as immunizations, are now provided free of charge to families. Vision care is one of the essential health benefits. It is important to note that some plans cover oral health, and that there are also “stand alone” dental plans available in the Marketplace.

losing CoverAge Discrepancies in documentation can occur. If this happens, families can call the Marketplace at (800) 318-2596 or find local help at https://localhelp.healthcare.gov/#intro. There are various options for children aging out including Marketplace plans up until age 26 (or older if required by state law). Children may also be eligible for Medicaid or Medicare. In addition, children with developmental disabilities can be covered by a parent’s plan indefinitely under the disabled dependent provision. Families should ask their human resources department about this option.

eligible, but not enrolled Many families may not realize that their children are eligible for coverage. In mixed immigrant families, even if parents are ineligible, their children may be found eligible; see www.healthcare.gov/immigrants/immigration-status/. Some children may also be eligible for Medicaid or be covered by insurance through the Children’s Health Insurance Program; see www.healthcare.gov/immigrants/. In addition, families may be eligible for coverage if their circumstances have changed such as getting married, having a child, or losing a job and benefits. To learn more about specific circumstances that allow children to qualify for special enrollment outside of the regular enrollment timeframe each year go to: www.healthcare.gov/reporting-changes/. It is important to note that Medicaid enrollment is available year round. All of these topics, and many others, have been covered in detail in the NCFPP’s monthly ACA blog posts. Go to www.fv-ncfpp.org/blog. For additional information and assistance about the ACA, Medicaid, CHIP, and private insurance, families can contact their state’s Family-to-Family Health Information Center. Find the organization in your state by going to: www.fv-ncfpp.org/ • The ACA Tip Sheets and Blog were developed with funding from the Health Resources and Services Administration (HRSA)/Maternal and Child Health Bureau (MCHB)/Division of Services for Children with Special Health Needs (DSCSHN), through cooperative agreement #U40MC00149 Family Voices, Inc., 3701 San Mateo Blvd. NE, Suite 103, Albuquerque, NM 87110. Phone: (505) 872-4774 or (888) 835-5669; Fax: (505) 872-4780; www.familyvoices.org ABOUT THE AUTHOR: 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 the Statewide Parent Advocacy Network (SPAN) at www.spanadvocacy.org.

FACTS, FIGURES AND FAMILY : THE AFFORDABLE CARE ACT AND CHILDREN WITH SPECIAL NEEDS

national Center for familY professional partnerships General information and contact information for state Family-to-Family Health Information Centers

monthlY information on the aCa and Children With speCial needs

What to KnoW When assisting a Consumer Who has a Child or Youth With speCial health Care needs A tip sheet created by the Family Voices NCFPP can be found at: www.nationaldisabilitynavigator.org/ndnrc-materials/fact-sheets/population-specific-fact-

www.fv-ncfpp.org

www.fv-ncfpp.org/blog

sheet-child-with-special-health-care-needs/

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PA R T   I I   o f a S E R I E S

PROMINENT PHYSICIAN PROPOSES A

CAN-DO WAY TO REDUCE HEALTH CARE COSTS – BY FINDING CURES INTERVIEW OF STEPHEN L. DEFELICE, M.D., BY JOSEPH M. VALENZANO JR. n Dr. DeFelice’s journey with carnitine, he faced every barrier in our medical discovery system. He believes the Doctornaut Act is the only practical remedy and route to achievable solutions. “My experience with carnitine and our Barrier System would require a thick book that no one would read,” he said. “A single tragic story concerning cancer clearly demonstrates this. At WRAIR, the Walter Reed Army Institute of Research, Major James Vick, an energetic cardiovascular pharmacologist and good friend, and I showed in animal studies that carnitine blocked the heart damage caused by doxorubicin. This highly effective, broad spectrum anticancer drug is limited in use because of its cardiotoxicity. Our findings, which have been confirmed by other researchers, raise the possibility that we could increase its dose, kill more cancer cells, and save or prolong lives. “We, much to our surprise, then discovered that carnitine increases the kill capacity of doxorubicin ten-fold against rodent ovarian cells in culture. Later, a distinguished scientist colleague, as a personal favor to me, showed that carnitine, by itself, dramatically killed human ovarian cancer cells in culture and also added to doxorubicin’s kill capacity. Carnitine alone also kills human colon cancer cells in culture as well as some animal types which add to its promise. “Boy, was I excited! Both carnitine and doxorubicin can destroy ovarian tumor cancer cells. It’s also possible to raise the

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22 June August 2016 2016 • EP • EP MAGAZINE MAGAZINE | eparent.com | eparent.com

dose of doxorubicin by protecting the heart and kill even more of them. Carnitine, already in hospital pharmacies immediately available to patients, made it possible to administer this combination on the same day it’s ordered by the oncologist. “My friend, Dr. Cavazza, agreed to fund a clinical study that I proposed in late stage ovarian cancer patients with a certain rendezvous with death. But I needed some type proprietary or exclusivity protection which the Orphan Drug Act provides. I was successful in obtaining such status with carnitine in the past and was sure it would be a slam-dunk. But the head of this division, all by himself with no objections, changed the rules, making it more difficult and costly to obtain Orphan Drug status and rejected my application. I’m sure other medical innovators, knowing this, did not even apply. Dr. Cavazza had no choice and reluctantly withdrew his support. “So I approached a large pharmaceutical company that would have unquestionably benefitted if this low-cost study were positive. Incredible as it may seem, they refused. ”Next, I contacted my colleague and renowned oncologist, Emil Frei, the distinguished Director of the Dana Farber Institute. He was sufficiently impressed with the carnitine-doxorubicin data to propose conducting a clinical study in patients with soft tissue sarcoma. But, for personal reasons, it never happened. He did, however, recommend two famous oncologists to contact regarding the ovarian cancer study, which I did. •

PHOTO PROVIDED BY STEPHEN L. DEFELICE, PHOTOS PROVIDED MD FROM THE BY FAYZAL NEW YORK MAHAMED TIMES

DOCTOR’S UNITE: Dr. DeFelice with Doctor and former Senator Bill Frist. “Before and during the presidential health care debate, we will present the ‘Cure Care versus Health Care’ initiative. Through our educational and public relations efforts, we will reach influential leaders who will encourage others to join us. Senator Bill Frist’s previous support of The Doctornaut Act will be very helpful to us.” “They, and other oncologists I met, all wanted more costly preclinical studies performed before making a decision. I had some good luck and arranged to have the study approved at a local hospital. But patients were tough to come by. I asked a prestigious national foundation that deals with ovarian cancer to help us locate patient volunteers, but they were not interested. “When I tell this story to people they are incredulous! They simply don’t understand how this could happen. My long experience with carnitine and ovarian cancer is difficult to accept, let alone understand. “After this experience, the gods on Mount Olympus sent me a message that it was time to give up the ship. And so I did. I am not saying that carnitine is a miracle cure because it’s not. It’s a long shot. But it was the only shot! “And there’s a reasonable theory as to why it might work. Many tumors prefer sugar to feed on. What carnitine does is to make cells eat fat and this effect may actually cause tumors to starve to death or become more sensitive to anti-cancer drugs and the human immune system.

“This is nothing new. In 1931, Otto Warburg won the Nobel Prize for his work on the anaerobic metabolism of cancer cells and their need for sugar. There appears to be a ‘Warburg Revival’ underway now and this might hopefully be helpful to patients. “To repeat, we’re dealing with an antipatient cultural mindset. The ovarian cancer patients were at the end of the therapeutic line and doomed to die. And, as I said before, there’s carnitine and doxorubicin sitting on hospital pharmacy shelves immediately ready to be administered. What most disturbs me is that patients were not told about the option. It’s all part of our invisible Barrier System.” Dr. DeFelice summed up this situation. “What’s the general message of this specific experience? The FDA bureaucrats, the corporate physicians, the medical foundations, and the oncologists form an intertwined, complex system that creates obstacles to promising clinical trials. Money reigns supreme. Lots of it would have overcome the barriers to the ovarian cancer study.” Dr. DeFelice paused, looked me straight in the eye, which

I asked “Why do you still believe that our next president or even Congress would become advocates of the Doctornaut Act?” Without hesitation, he shot back, “The national debt and the impact of health care costs.”

PHOTO PROVIDED BY STEPHEN L. DEFELICE, MD

eparent.com | EP MAGAZINE • August 2016 23

meant something big was coming. “Joe, my experience with carnitine and cancer exemplifies the general nature of our Barrier System. The barriers are the same for all promising therapies. I have had similar experiences with nerve growth factor in multiple sclerosis and a cervical cancer vaccine, to name just two. “The ovarian cancer story; the example of Rock Hudson on Good Morning America; and others examples send an unequivocal message. We have a huge cultural blind spot to even thinking about of having a Cure Care policy and an absolute blind spot regarding the essential role of clinical research in medical discovery. “To repeat, the good news is that the simple, uncomplicated Doctornaut Act is the solution. If, for example, female doctornauts with ovarian cancer had existed in the late 70’s, then many patients would still be with us. And this discovery would have led to clinical studies with the combination in other types of cancer. fter Dr. DeFelice described parts of our labyrinthine system, I told him I couldn’t see how The Doctornaut Act could change it—and he surprisingly agreed! “The system cannot be changed,” he asserted. “It is embedded in our culture, so you have to go add to it. The Doctornaut Act is simply an uncomplicated addition. But here’s the other good news. If the carnitine-doxorubicin combination destroyed ovarian cancer tumors then, by public demand, the pressure would be so great that the administrative system would have to make it available to doctors and patients as soon as feasible. And don’t forget, that doctors are not bound by the FDA to treat patients for non-approved uses. Public pressure will play a huge role in all major medical breakthroughs. I then challenged him, “You have tried unsuccessfully for over 40 years, what makes you believe that now is the time to seize the moment?” Dr. DeFelice replied, “Our culture is rapidly changing its habits and values. People, particularly baby boomers, are paying more attention and are better informed. Although there is much misinformation from the media regarding

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24 August 2016 • EP MAGAZINE | eparent.com

health and medical issues, the public does hear about promising medical advances. This may help create a sense of urgency which we sorely need to bring about change. Also, there’s also the cost of medical care which combined with the sense of urgency can change our cultural mindset.” DeFelice switched gears again and said, “Speaking of the media, notice that, after

“Did you know that future health care cost projections do not include the discovery of cures? This presidential debate has aroused the interest of the public and media as never before. The people are now listening.” reporting on a potential new therapy, they routinely report that it will take a long time before it reaches the patient. They never—and I mean never—explain why! They themselves haven’t the slightest understanding of the Barrier System and it is tough to find experts to ask why this is so.” I asked Dr DeFelice the bottom line question. “Would physicians be willing to be Doctornauts?” It’s interesting to note that in Michael Mannion’s book, A Maverick’s Odyssey, about Dr. DeFelice’s quest to conquer disease, a few of his physician friends who are sympathetic to his mission were not convinced doctors would volunteer. Dr. DeFelice dismisses their beliefs for a variety of reasons. Specifically, he learned in his work with prisoner volunteers for clinical trials how strongly people are altruistic and want to help others. In his research unit in a state prison, and at WRAIR, where he collaborated with two other prison facilities, he serendipitously discovered carnitine’s role in car-

diac disease in one of his prisoner volunteers. This opened the doors to its development for Carnitine Deficiency in children. Dr. DeFelice suddenly smiled. This time it was a cynical one. “Would you believe that later on, the FDA virtually closed down prison research facilities? This created another significant barrier to discovery. And it robbed prisoners of the right to be noble and courageous. The barriers never stop. Once more, who pays the price? The patient!” In 1983, because of his personal interest in the promise of natural substances, the Foundation for Innovation in Medicine conducted a physician survey asking, “Would you, as a physician-patient, want the privilege to volunteer for clinical research of natural substances under the supervision of a physician-clinical researcher without any FDA, institutional or other restraints?” Over 50 percent said they would. Women physicians were as bullish as the men. Today, there are over 900,000 U.S. physicians in the U.S. If only 10 percent volunteered, there would be 90,000 Doctornauts, a substantial number for early discovery phase studies where generally only small numbers of patients are evaluated. Dr. DeFelice suggested that foreign physicians might also be permitted to be doctornauts in the United States. Why not? “Dr. DeFelice, I understand your general concept but how, specifically, would Doctornauts speed up medical discovery?” “Joe, generally speaking, Doctornauts would participate in small, short-term clinical studies with potential therapies that offer more than ordinary promise,” he answered. “Doctornauts are not suited for long term clinical studies, such as whether a cholesterol-lowering agent prevents heart attacks. Large numbers of non-patented, logical combinations of promising therapies, as well as natural substance therapies, will be tested. This will not happen without the Doctornaut Act. Doctornauts are major door openers which will, without doubt, expand our base of medical innovators. “Here is another great example,” he continued. “Genetic therapy, particularly the newly discovered CRISPR gene-editing technology, is controversial. People understandably fear it will alter human

nature in ways unknown. Costly and timeconsuming barriers will certainly be erected before the first dose is given in any clinical study, let alone subsequent ones. This is bad news for orphan or rare diseases and disabilities. There are about 7000 of them; 80 percent are due to genetic abnormalities. “It’s estimated there are 30 million orphan disease patients in the United States, many of them who are children. But with Doctornauts, the barriers would be reduced and discoveries made that could lead to new treatments for children. If, for example, a drug is effective in doctornauts with leukemia, it could also be given to children. It’s a best kept secret that the vast majority of drugs cannot get to the brain because of the blood-brain barrier. A recent really exciting study in mice reported that, using viruses as the carrier, not only drugs, but also genes can enter the brain. If studies in doctornauts prove this to be true, then this method can be employed in children with multiple types of neurological disabilities and disease and would lead to dramatic medical breakthroughs. I asked “Why do you still believe that our next president or even Congress would become advocates of the Doctornaut Act?” Without hesitation, he shot back, “The national debt and the impact of health care costs.” I asked him to elaborate. “Over the years,” he began, “I‘ve come to know conservatives and liberals both in the House and the Senate, as well as influential elites who impact public opinion and public policy. About 25 years ago, I met with one of the most liberal members in the House of Representatives, a thoughtful and sincere man who is still there. I explained the rationale behind the Doctornaut Act, seeking his advice on how to move the Congress to enact it. “After a long moment of silent reflection, he confidently answered, ‘Make it clear how your doctornauts will reduce health care costs. That will get our attention because no one knows how to substantially reduce costs except by political suicide.’ He was, of course, referring to making big cuts in Medicare and Medicaid services which even President Reagan, in his cost reduction initiative, left untouched.

“I told him that the cost reduction argument may not convince opponents who would raise a legitimate argument: breakthrough therapies would be expensive and increase costs. He agreed that this could be a problem and asked if I saw a solution. “I smiled and answered, ‘Capitalism.’ He also smiled for he’s not a great fan of it. I explained that, in our dynamic market system, both expensive and inexpensive

Exceptional Parent will join forces with Dr. DeFelice. We plan to form a group of dedicated moms with children with disabilities and diseases, Mothers for Doctornauts, who are committed to spreading the message. therapies would soon be discovered and compete with each other in the medical marketplace. “For example, the estimated cost for Alzheimer’s by the year 2050 is $20 trillion—greater than our current national debt. Also, the money saved by curing Alzheimer’s could be used for research on diabetes, autism and other diseases. It’s a win-win situation. “Did you know that future health care cost projections do not include the discovery of cures? This is mind-boggling and confirms our cultural blind spot that they won’t happen. “As I said before, this presidential debate has aroused the interest of the public and media as never before. The people are now listening. Before and during the presidential health care debate, we will present the Cure Care versus Health Care initiative. Through our educational and public relations efforts, we will reach influential leaders who will encourage others to join us. Senator Bill Frist’s previous support of The Doctornaut Act will be

very helpful to us. “What will also help is the Act’s simplicity. Unlike the 2000-page, labyrinthine Affordable Care Act, ours could be about 12 pages long and can be read and understood within an hour!” inally, I was curious to learn about his marketing strategy. “I’m depending on what I call a ‘Pascal moment.’ The brilliant French thinker observed that small things can have big impacts. For example, if Cleopatra had a really big nose, Julius Caesar would not have fallen for her. Roman history—and the history of Western civilization— would have been different. Our Pascal moment will be a small, but focused, public education effort that would hopefully have a large impact. Much depends on timing, luck and prayers. And there’s no doubt that I’ll be asking God for any help he can give me. It’s now or never for the Doctornaut Act. Let’s give it our best. We need dedicated leaders to join us. I can’t do it alone.” Well, I told him that Exceptional Parent certainly will join forces. We plan to form a group of dedicated moms with children with disabilities and diseases, Mothers for Doctornauts, who are committed to spreading the message. In the final analysis, Dr. DeFelice is the one person who can coordinate and implement the entire approach. Let’s hope that he convinces our next president to seize the moment and successfully push for the enactment of The Doctornaut Act. •

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Part I of this article appeared in EP’s July 2016 issue, as well as on www.eparent.com

ABOUT THE AUTHOR: Stephen L. DeFelice, M.D., is the founder and Chairman of FIM, the Foundation for Innovation in Medicine whose mission is to speed up the discovery of breakthrough medical therapies, including cures. He has proposed the Doctornaut Act as the way to discover such cures as well as substantially reduce health care costs. Visit www.fimdefelice.org. He brought carnitine into the United States and guided it through our entire system to obtain FDA approval which now saves the lives of children with the previously fatal disease, Primary Carnitine Deficiency.

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Care Issue

As we wait to see what will happen, I take each day as it comes and continue to fight to make sure my boys will have access to this drug – it is our only hope at this stage.

MY FAMILY’S JOURNEY with

DUCHENNE MUSCULAR DYSTROPHY BY BETTY VERTIN

26 August 2016 • EP MAGAZINE | eparent.com

•

PHOTOS PROVIDED BY BETTY VERTIN

have three sweet boys with a rare genetic disease called Duchenne muscular dystrophy (DMD), a progressive condition that causes gradual muscle loss and weakness and eventually robs people of the ability to walk, often from as early as 10 years of age. DMD primarily affects boys and can lead to life-threatening lung and heart complications in their late teens and early twen-

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ties. There is no cure, and there are currently no approved therapies to treat DMD. However, researchers are working to advance an investigative treatment that is currently available only in clinical trials in the U.S. It has been shown to help delay progression of the disease, and is giving our family and many other families hope that help might be available someday soon. eparent.com | EP MAGAZINE • August 2016 27

y family’s journey with DMD began in 2010 when my oldest son, Max was diagnosed at four years old. He was in preschool at the time and he wasn’t meeting many of his developmental milestones. At first we thought he was missing milestones because he was a big baby, but during a parent teacher conference his teacher suggested that we check with a doctor. Our family doctor enrolled Max in a physical therapy program, and it quickly became apparent that his developmental challenges were due to muscle weakness and not just slower-than-normal development. The physical therapist suggested that we get a blood test for Max to confirm whether he might have a type of muscular dystrophy (MD). At the time, I didn’t know what MD was, so I asked our doctor to describe the symptoms. He mentioned that many boys with DMD have large calf muscles, trouble walking long distances or getting up off the floor, and many other symptoms that described Max perfectly. When I got a final confirmation that Max had DMD, it was the worst day of my life. No parent should hear words like: “your son will die.” As awful as it was to hear that for the first time, our nightmare was only beginning. I learned that as a carrier of the disease, there was a 50 percent chance that my other sons would be affected. I was pregnant at the time of Max’s diagnosis, and I also started to notice that my two-year-old son Rowen was having diffiFOREVER FAMILY: “I know that three of my children have DMD, but when I think about culty getting up and down the stool he used this rare disease all I see are my sweet little boys growing into fun, ornery, courageous to brush his teeth. I thought he also might young men before my eyes.” be affected but I wasn’t ready to have him Max will be 11 in November, and in many ways he is like any tested right away. After I gave birth to my son Charlie, we had Rowen tested and it confirmed my suspicion that he had DMD. other 10 year old. He loves music and theater and participates in After six months when my baby Charlie was having trouble lifting a youth theater group that has rehearsals for two hours in the his head up, we had him tested and results showed that he too had evening. He is able to go up and down the stairs and stand for long DMD. Within the span of one year, between July 2010 and August periods of time during rehearsals without any assistance. I’ve also 2011, three of our five children were diagnosed with DMD. It was noticed a difference in Max’s fatigue since starting Translarna. devastating. After an intense period of grieving, my husband Jason Before treatment he would have to rest while putting together a and I made a choice to focus on the positive and to do whatever Lego set. Now he is able to complete the set in one sitting. Rowen we could to fight for our boys. We started to do research about any is seven and our neurologist in Cincinnati has confirmed that his DMD is more severe. He is treated with higher levels of steroids possible treatment options that might be available to us. We learned that the boys had a specific form of DMD caused by than Max, but he seems weaker and has lost some dexterity in his a nonsense mutation (nmDMD) and that there was a clinical trial hands. He now needs a scribe to write for him in school, but he in the U.S. for a drug called Translarna, specifically for patients continues to be as active and playful as he can every day. He plays with this mutation. Max qualified and was able to enroll in the city league baseball with his younger brother, Charlie. With trial. Rowen and Charlie were too young at the time, but have Rowen’s more severe case of DMD, I feel that if he wasn’t on since been able to participate through a sibling access program. Translarna he would have regressed much further at this point. Charlie is five and he is the most active of the boys. He loves ridWe knew going in that Translarna was not a cure, but were hopeful that the drug would help to improve the quality of life for our ing his bike, playing baseball, swimming and swinging on the swing set. He continually amazes us. He starts kindergarten next boys and potentially help to slow the progression of the disease.

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28 August 2016 • EP MAGAZINE | eparent.com

year and I think he is doing so well because he was able to get on Translarna so young, before the disease really had a chance to progress. With the boys enjoying all these activities this summer, it is devastating to think about what would happen if they lost access to the drug. But the reality is that this could happen if it is not approved by the FDA. As we wait to see what will happen, I take each day as it comes and continue to fight to make sure my boys will have access to this drug – it is our only hope at this stage. I want the FDA to know what this decision could mean for our family and to give Translarna every consideration for approval. In addition to participating in the Translarna clinical trial, the boys take part in different therapies including physical therapy and home stretching, occupational therapy and speech therapy. Rowen is currently doing weekly occupational therapy (OT) while the other two boys have consultative OT at school. Rowen and Charlie have also both graduated from speech therapy. They use ankle and foot orthotics, medical strollers for walking long distances, and chairs that provide back and

foot support. They also follow a steroid regimen and take supplements for heart and bone health. For all DMD care we take the boys to the Cincinnati Children’s Hospital’s Neuromuscular Center two times a year. Max and Rowen both have manual wheelchairs with power assist and we are in the process of ordering mobility scooters for all three boys. We are taking every step available to us to protect their health and to keep this disease from progressing. But we certainly know that this will not be enough. During the summer, I take the kids to a waterpark two to three days a week to beat the heat and they love playing in the water and going down the slides. I now have six kids, along with Max, Rowen and Charlie; I have my nine-year-old son, Chance, 15year-old, Lexi, as well as my two-year-old daughter, Mary. I know that three of my children have DMD, but when I think about this rare disease all I see are my sweet little boys growing into fun, ornery, courageous young men before my eyes. And I continually look for ways to give my family the joy and support and fun that any parent wants for their children. •

MDA Muscle Walk empowers individuals in hometowns across America to raise critical awareness and funds for muscle-debilitating diseases that severely weaken muscle strength and mobility. This is more than a walk.

ABOUT THE AUTHOR: Betty Vertin is a 36-year-old mom living in Hastings, Nebraska with her husband, Jason and their six children: Lexi, Max, Chance, Rowen, Charlie and Mary. Despite the fact that three of her six children have been diagnosed with Duchenne muscular dystrophy (DMD), a rare and devastating degenerative disease, she has spent the last six years making every effort to help her family live and enjoy live to the fullest. She has made these efforts in the face of severe challenges in the health of her three sons affected by DMD. In addition to caring for her family, she also works to educate people about DMD and raise money for research to find a cure, which has become an important focus based on promising research that is now working to advance potential therapies toward approval. You can learn more through her Facebook page: facebook.com/MaxRowenCharlie

References “Duchenne muscular dystrophy signs and symptoms,” MDA.org, accessed July 13, 2016, https://www.mda.org/disease/duchenne-muscular-dystrophy/signsand-symptoms “Duchenne muscular dystrophy research,” MDA.org, accessed July 13, 2016, https://www.mda.org/disease/duchenne-musculardystrophy/research “Duchenne muscular dystrophy causes and inheritance,” MDA.org, accessed July 13, 2016, https://www.mda.org/disease/duchenne-muscular-dystrophy/causes-inheritance

MDA Muscle Walk is a life-changing experience that unites families, friends, neighbors and local businesses to forge powerful connections, celebrate the strength of MDA families and transform hope into answers.

For Strength ,Independence and Life | www.mda.org eparent.com | EP MAGAZINE • August 2016 29

EP Health

Care Issue

Peace of Mind BY MICHELLE BOUDREAU have attended many health conferences over several years and the “Warrior Parents” always stand out. I often wonder how they persevere with amazing strength and courage. They certainly are heroes in my mind. I would like to share with you a wonderful story of encouragement from a “Warrior Mom”, Jessica Coleman, who has a beautiful son, Lennon who is four years old and on the autism spectrum. When I interviewed Jessica, she recalled when she was at a loss when her son was first diagnosed with autism at 21 months old. She was in a horrible state of depression due to Lennon’s health issues and nothing was working. Jessica had never heard of Generation Rescue (GR), one of the nation’s premiere resources for parents with special needs children, until a friend encouraged Jessica to visit their web site, take advantage of the resources offered and attend one of their conferences. Jessica’s friends remained supportive and encouraged her to hang in there and wait for the Generation Rescue Summit stating, “You will get some answers. I promise, this will help you.”

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She first attended the GR conference titled, Autism Education Summit, in 2014. Jessica described the event as, in her words, “Blown away.” She gained a plethora of much needed information. Jessica felt they were speaking directly to her, as physician after physician gave her, as she states, “light bulb after light bulb moments”. She said, “They are describing my child!” She continued with more seminars and gathered more information. She went home that evening to her mother and excitedly said, “I have bought you a ticket. You have to come with me, I need you to hear what the physicians are saying so you can believe this.” Her mother agreed and was also in amazement of the new found information they had both received from the Medical Academy for Pediatric Special Needs (MAPS) physicians. Generation Rescue is dedicated to providing resources, guidance and support to families affected by ASD. This includes connecting families with properly trained medical professionals who provide evidence-based, bio-medical treatments in an effort to directly improve the child’s quality of life.

Generation Rescue is dedicated to providing resources, guidance and support to families affected by ASD.

30 August 2016 • EP MAGAZINE | eparent.com

PHOTOS PROVIDED BY MICHELLE BOUDREAU

Grant Program. She quickly began the program and was connected with her first MAPS physician and Lennon said his first words shortly after in January 2015. To this day Lennon continues to make great strides following biomedical treatments including, but not limited to: • Two MAPS physician visits/consultations • Urinary porphyrins test • Comprehensive stool analysis • Listening Program- which is amazing and very beneficial to everyone • Parent mentor that was available anytime to answer questions and checked in our progress and successes weekly. • Copy of Healing and Preventing Autism and a resource book • HUGE box of supplements that included: Digestive Enzymes Multivitamin Omega 3 Probiotics Methyl B12 Jessica stated, “I do think it is vitally important for physicians, though not only for our autism physicians who truly understand our kids and all of the various medical issues that come along with that diagnosis, complete the MAPS training and remain current on the latest research and treatments. We have been so lucky to have a very well informed staff that conducts research and has guided us to alternative treatments for my son’s gut issues and addressing red flags on lab testing. As a parent, the difference between finding a doctor who has completed the MAPS training, versus a doctor who has not, is that your gut instincts will be blown off. They will not be likely to seek out the root cause of your child's symptoms and will want to just mask them with medication instead of wanting to help them feel better. We need doctors to think outside of the box with our kids and especially when it comes to dangerous pharmaceuticals, I far prefer a more natural and safe approach to healing than someone shoving a prescription in my hand after a 10-minute office visit. Our doctors take the time to try to solve mysteries... not only to help my child in particular but others as well. The following is a letter Jessica wrote to GR after her grant round ended last year:

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A MAP TO THE FUTURE: In October 2014, Jessica Coleman submitted her application to the Generation Rescue Family Grant Program. After being accepted, she was connected with her first MAPS physician, and in January 2015 Lennon said his first words. Jenny McCarthy’s son, Evan, was diagnosed with autism. Jenny embarked on an extensive search for answers. When she found the GR website, it quickly became her cornerstone. In 2008, Jenny reached out to GR to thank them for creating an organization that gave voice to her struggles. Remaining aware of how vitally important the organization is to so many families, Jenny offered to help any way she could. Shortly following her proposal, Jenny became president of GR. Today, Generation Rescue is known throughout the world for its dedication to the recovery of children with ASD by providing guidance and support for all special needs families. Jessica reflected the time in 2014 when she attended the first Generation Rescue Education Summit in Dallas. She was waiting in line to meet Jenny McCarthy and

when she spoke to her, Jessica said she just broke down in tears as she was overwhelmed with where to start. Jenny encouraged her to submit a grant applica-

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We need doctors to think outside of the box, especially when it comes to dangerous pharmaceuticals. tion, as they offer grants to help parents just like her. In October 2014, Jessica submitted her application, per Jenny’s advice. Shortly after her submission, Jessica was accepted to the Generation Rescue Family

eparent.com | EP MAGAZINE • August 2016 31

ren you are saving child nt you to know that wa ve I ha n. u so yo t my gif d le ve ow that you sa for the incredib u kn yo to of u yo all nt to wa be I ll . l I wi that you saved me how forever gratefu I want you to know I want you to know ly nt rta po im st Mo here. and families everyw ssy baby but hit his on was always a fu . nn Le . hs nt given me mo 21 of is nasty gut instinct at the age re and I just had th in November 2013 we ed s os kid gn eded to ds dia s en fri wa he my nnon, ing wrong and I ne lking like You know my son Le me there was noth e that he wasn't ta g tic lin She no tel r.” to n d we cia rte slo tri sta dia lop I pe ly on time. boy, they deve , despite his a ht is rig e g “H hin ll! yt wa er ev milestones seeming ick I did aluation. The nking br around 15 months. ey came to do his ev s like talking to a sti th wa y It da . e ed th at t ge alu that he had autism ev for r ing to tell me I was I. I will neve was three to get him hoped they were go nd a referral to EC I se if to en ev ed wait and see until he t, re ag an d me an ugh they could not ew what that d a speech delay tism diagnosis altho au s in my heart, I kn e er th gg a did agree that he ha for da e e ar lik ep re pr we gs and to tely for me there is ing each other had so many red fla vention, and fortuna he ter A In looks they kept giv at AB th rly d se me Ea ba ed th ar wi me y ep rent ho therap e. They pr even offered me Pa we got started with crazy and he was fin to test Lennon and I thin the same week EC Wi s. by lve nt se se s em wa th eafter. diagnose him Intervention that journey shortly ther ng in early Autism ung and begin our yo so is but os local group specializi gn dia he had small gains, ly lucky to get his progressing. Sure, ’t sn d wa ha training. We were tru d He an . t on ea nn not so gr n about Le had many that were rther into depressio We ce fu d. g sin ha kin ry we sin dia s al am ist I on ap d by an (my pers o great ther Roughly a year goes posting to Facebook e, rt to the one or tw er lur pa mb fai all a me sm e re lik y in g d ctl lin an tin him aging ng door. I dis m that was fee lvi mo vo a re of a e at lik th s y be an I attributed those to wa eady post comp d went through the tunate enough to alr yed beyond belief. My many that came an s obvious. I was for rope and it was fra wa biomed my at int th of po d d is an en th e ed th til ed at un ne I was sn’t what he ed. You see, up wa ed t ne jus I it at his diagnosis) and d, wh ha t I ta jus ls s like me lking to would be son with the too them as a newbie wa ised me the Summit to om lk pr ta how I could help my at to th d dy an t ea ar alr would go along with insanely sm biomed mom's w-what that Lennon no ow are intense and u-k kn connected to some I yo wn in ms ce mo e an Th ch . it alone and I was blo ere wasn’t a scary to me your Autism Summ d really thought th was confusing and d an de d ten rte at I sta y t da ge xt to ne e how e the Summit. The Einstein. I had no clu s the Thursday befor wa is th nd mi in ep the diet. Ke SWER!” Things that IT, THIS IS OUR AN IS S HI “T try away. g yin sa d excited an d encouraged me to ting my parents so t listened to me an tex jus d r of at an th cto y ion do da ss no se at d th st ke my fir so shoc erful moms I remember going to my head and being met so many wond ing was I . ak It ed sh y. ck t da cli jus t at y, th jus da it e, at to me befor I experienced ed a lot of th d th an ou on -m en oti op em me lf e se th th hadn’t made sense wi my ... you name mom came give up hope. I found sad, happy, excited that had hope! My y, b gr clu an a s , wa ely this and not to ever I at ote . er yn me sp de the Ke ioned any of this to b I wanted to join so ay we sat through ours had even ment b in the world, a clu ed a lot. That Saturd clu us s st like mine. It s wa ole ” co wa e ow lar th “w cu of rd rti ng ’s story in pa . I think the wo ne ns yo tio an like going to a meeti ac at re th r ’t he e sn se me to be. w up. It wa was funny to where God wanted I was about to thro tly tly ac the next day and it en ex s sil wa rd I ha ew so kn g , and I mber cryin second that passed speeches and I reme is experience. I me and with every sa e th s wa e ttl d thank them for th ba an em th et me was that the to eak down crye I needed about my son and br d Dawn after becaus tle an lit a an t Ry ou er ie, nn mm Do was sta point, so she gave meet Jenny, e came all I could do se I had not at that tim ur e We waited in line to co th of en d wh an t ,” bu t? y an our gr panel and took pics ed to say to Jenn “Have you applied for met the rest of the I s, g! wa hin had so much I want me yt to er ev id d sa ge e . chan e first thing sh ment.... right there.. . ing. I remember th to get on it! That mo at brings us to today me th d d tol an d it an rd mm ca su e th ter af tly me Candace's or sh a child who had plied for this grant bears repeating that it t bu dy ea with Donnie too. I ap alr is me begging him for u know th out “Yes, please,” to erything. I know yo ev lls of ye , g ys nin da gin 11 be e ter ghing, af y. HE DID IT, HE nuary and th and crying and lau in my room and cr Fast forward to Ja ing sit ss to fu go an to th ve er lea oth d cry, but a cry of d I had to s all but mute H... WORDS! Not a sa e a ton of bricks an UT lik MO NO language and wa me LE hit TT it d it was one LI er L mb FU time. I reme ts I've ever had, an THAT BEAUTI es OF b-f T so OU tic eu NG ap MI er CO the million-billionth th RDS e most later I noticed D THOSE WERE WO s probably one of th on video! A few days wa it at ht Th ug it. ca ll ve ca TRIED TO TALK, AN ha to to nt enough ing around to ... whatever you wa before! He was turn ard it and was lucky ed he d int ha po I r at ve relief, joy, love, pride th ne d ve ha lie us. It was a miracle what?! He cries. I couldn’t be he wanted to show r e, what he wanted... ca se a to d of those really ugly ha me he ed nt en wa se to talking! Every ow funny, wh things, what he vocal and is this clo found a line in a sh be he to he was pointing to any en ing wh try d, s ye wa pla itating, he ery day, do you have him when he s engaged, he was im ing to say them! Ev make sure we saw wa try y he , all tu ier ac pp t ha bu s g gruntin us! He wa request it, not just unfolding in front of a new word when I ing pt tem at him day I hear ve me this! ably the most means to me, you ga t program. It is prob an gr e th idea how much this ing ed ec hell months. cember pr ll our own personal t November and De ca ou to ab e e lik ar I sh at to wh e ve ar 2014 u and I ha mber and December I share this with yo into our story. Nove y pla u yo w ho of important part

Dear Generation Re

Carthy, scue and Jenny Mc

32 August 2016 • EP MAGAZINE | eparent.com

py was a waste of time then and all of his dn’t cooperate with any of his therapists, thera in his crib, in time out Lennon's behaviors were so bad and he woul , and a good majority of his day was spent daily ngs beati baby l actua took I him. cate team was urging me to medi at me. for hitting or kicking or throwing something specializes in autism in hopes she would the appointment with a local Neurologist that His ABA therapist basically helped me set up st in agreement, and having five therapists through pure hell for two months I was almo agree to put Lennon on Risperdal. After going putting more pressure on me than ever two year old child on anti-psychotic meds was since I told her I had contelling you, that it was a good thing to put your r without meds, but suggested Abilify to start bette any get dn’t woul he d agree o Neur -day supply in syringes to get before. Sure enough, the ription in my hand on January 2nd and a three presc the had I rdal. Rispe on read I s thing cerns about some Abilify and when I did the “sick” feelthe grant and decided that I would research start to t abou were we knew I end. week the us through could I risk these awful side effects with my g him turned into a full on panic attack. How catin medi over office r’s docto the at had I ing out? As the night went on, I had severe stom starting? Was I just wanting the easy way and y Abilif the on wait to ed decid I son? Had I really given up already before even and though, mom. I already knew what my answer was, s ach upset and went to discuss things with my was all I was giving it, ok maybe three week days 30 cine. medi the to back go ys alwa could I e wors got s say I If thing if and , give the grant 30 days on was beating me up every day I felt)... A single mom can’t live like I was, Lenn (sorry but I have to ‘fess up and admit how lose all meaning. it was hell again I think my calling it hell will and knew that was the right answer for universe, I had an immediate calm to my panic son. I didn’t need 30 After putting those words out there in the s to make my mind up about medicating my week three need t didn’ I say to less Need y. only the beginning. Lennon does us, for my son, for my famil was right. It was only the beginning, now is doing were we what knew I and days 15 t days, it took abou was making him high and hurting his just needed me to stop giving him food that He did! r neve and n to catio medi otic sych NOT need anti-p supposed to be a trial, you weren’t supposed ed to commit to the diet with him. It was just need I r push the winte me this gave did t I like gran feel The I ach! stom gh fire for him, and on is my precious angel, I would walk throu completely change our lives. But you did! Lenn and we emerged like a phoenix! of the favorites in class. He is blossomfamily. He is excelling in school and is one his for love his show to loves and joy, of He is full accomplished. I all but quit my job to I could never have done half of what we have him. find me ng helpi for you to much so owe ing and I around. The grant was my only hope to start be his therapist when there are no therapists and him for care to on Lenn with home stay at nothing until he is healed. It all started with little guy is my whole world and I will stop biomed and see what it could do for us. That you enough praise for the work you do. You changed my life for the better. I cannot give iption. Coming from where I you last October. You really have singlehandedly cliché as it sounds, HOPE is the perfect descr As . HOPE and help , ation educ ort, supp e and you cast it out for me like a have given us so much is what I cling so desperately to, it is my lifelin hope ive, posit much so g seein now and have come from my little caterpillar that is slowly coming k you for the Lennon I see today. He is like than I much how s word into put ot cann I life vest! has ever seen. You have sincere friends beautiful, elegant, sparkling butterfly the world most the into ge emer to soon n cocoo his of out for life here in Texas! In Love and in Hope, Jessica Coleman, Warrior Mom to Lennon

On top of my other advice of not waiting to dive in and learn as much as you can and start treating your child, I did leave out that one of the most important thing: it is to NOT isolate yourself (something I wish I had learned sooner). Moms especially feel the need to take this head-on and we feel alone. It's vital that you build a support network. Mom and Dad, grandparents, aunts and uncles. Anyone that your child spends a significant amount of time with needs to understand what you are doing and why! They To find out more about maps physicians visit: www.medmaps.org or email: [email protected] To find out more about generation rescue visit: www.autismeducationsummit.com

EP readers receive a $10 discount using code EXCEPTIONAL at checkout

need to be on board, not just to keep you supported but one person alone cannot accomplish success. You cannot be with your child 24/7 and you need to be able to rest easy knowing another trusted caretaker understands why your child cannot have milk, or a Happy Meal. Set yourself and your child up for success and your stress level can be that much less! In closing, Jessica shares: “I love sharing our story; it’s important for everyone to know that HUGE progress is possible all you have to do is take that leap of faith! My only regret is I wished I had found MAPS physicians and had gone to the conference sooner!” • ABOUT THE AUTHOR: Michelle Boudreau is a national bestselling author who was once considered for a Pulitzer Prize nomination. She is a UCLA alumni, and media journalist, authoring numerous publications. Boudreau has 16 years’ experience as a consumer product specialist, focusing on health product awareness.

eparent.com | EP MAGAZINE • August 2016 33

BOOK REVIEW

TEARS OF MY ANGEL A MEMOIR OF LOVE, HOPE AND LOST DREAMS BY JOSEPH M. VALENZANO, JR. AND PATRICIA A. VALENZANO perseveres.” (1 Corinthians 13:4-8) s the President, CEO & Publisher of Exceptional Parent (EP) Such us the essence of Tears of My Angel: A Memoir of Love, magazine — our 46-year-old journal that provides information and practical advice for families as well as the Hope, and Lost Dreams. In her own words, Benedetta Lino stated, “From the first moment I held my daughter physicians, allied health care professionals, Laura in my arms, I realized that love has no educators and caregivers involved in the boundaries. It is endless. It is unconditional care and development of people with disand the strength and the joy that we draw abilities and chronic life-long conditions — from it are powerful and magical.” I have the privilege of meeting with and From the minute she began reading the interacting with thousands of parents book, my wife Pat said she could not put it around the world who have shared their down. It is a magnificent tale of uncondiperspectives on dealing with the sometimes tional love: love between a mother and daunting challenges of parenting a child child. Benedetta chronicles the joy, the pain, with special needs. Many submit their stothe heartbreak, the frustration and anger ries for publication in EP. A few take the that parents of a child with a disability time to share their perspectives in the form experience, but always knowing that love of of a book. Tears of My Angel: A Memoir of that child motivates those experiences. Love, Hope and Lost Dreams by Benedetta Through it all, the Lino’s, Benedetta and her Lino is one such book. My wife, Patricia, and Title: tears of my angel: a memoir of love, hope and lost dreams husband Tany of Sicily, Italy, remained pilI have had the good fortune to read it cover lars of strength when it came to caring for to cover and would like to share our Author: Benedetta lino their daughter Laura. Many years ago, my thoughts with you. Paperback: 178 pages father once told me “Non perdere tempo One of the criteria we use at EP is that any Publisher: iuniverse (april 9, 2012) cercando una ragione per le sofferenze e la submission, whether for an article or book ISBN-10: 1475906633 morte,” or, in English, “Don’t waste time tryshould deliver some “pearls,” bits of useful Available on Amazon.com, ing to reason with pain, suffering, life or pragmatic knowledge that can benefit the BarnesandNoble.com, iUniverse death.” The Lino’s kept their focus on the reader and other parents caring for their Bookstore, Apple iTunes (for iPads, iPods and iPhones) love of their child! loved ones. The most important message offered by Benedetta Lino is love. Yes, like all Exceptional Parents, she’s had her share of tears and struggles than any one family enedetta knew that “the dreams and hopes we had for our ought to have, but the driving force behind this story is love. As child died, but our child did not.” The mother demonstratmy wife and I read through the pages, this concept of unbridled ed how both she and her husband grasped this and moved love stood out like a beacon in the night clearly illustrated in 1 on with unconditional love for their daughter, Laura. During the Corinthians 13:4-8: description of one of many hospital stays, she delivered profound “Love is patient, love is kind. It does not envy, it does not boast, advice to any doctor dealing with people with chronic life-long it is not proud. It does not dishonor others, it is not self-seekdisabilities — doctors need to be 100 percent positive and a little ing, it is not easily angered, it keeps no record of wrongs. Love more empathetic... when giving parents such devastating news.” does not delight in evil but rejoices with the truth. It always The chronicle of the family’s search for a caregiver helper was protects, always trusts, always hopes, always hopes, always a tale of disappointment but, at the same time, it presented good

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PHOTOS PROVIDED BY BENEDETTA LINO

eparent.com | EP MAGAZINE • August 2016 35

advice for someone looking for a caregiver. Caregivers for children and young adults are a special breed of humanity. During too many of her hospital stays, Laura experienced people that were not as loving and respectful as they should have been. Once again, the words of my father came to mind: “Salvo che negli occhi di Dio, non tutti gl’uomini ono uguali: La Responsabilita’ di tutti noi’e’di aiutare coloro che non possano aiutare se stessi…” Except in the eyes of God, all men are not created equal; so we are, all of us, responsible to help those who cannot help themselves. The final chapter of the book addresses the many insights the author has received and learned in dealing with the system for over 25 years. Her advice to parents and caregivers is priceless and well worth reading and extremely helpful for parents caring for loved ones with special needs. All in all, Tears of My Angel: A Memoir of Love, Hope, and Lost Dreams is a chronicle of unconditional love for a child with lifealtering disabilities and her part and acceptance in the life of her family. It was, and still is an amazing journey and, as we follow the experiences of this truly amazing family and their experiences, we understand the message contained in 1 Corinthians 13:4-8 and perhaps the greatest lesson of all: “L’amore e’indistruttibileed e’quindi una potente forza umana.” Love is indestructible and therefore the most powerful human force. •

REASON TO CELEBRATE: Laura as a child with her family. As the years passed, and the normal milestones of a child’s life passed without being celebrated, the family instead celebrated the beauty of life, of Laura’s courage, and of the power of love.

ABOUT THE AUTHORS: Joseph and Patricia Valenzano, married for 45 years this summer, have five sons and seven grandchildren.

Get started at

You’ve got what it takes.

36 August 2016 • EP MAGAZINE | eparent.com

Leading the Charge for Compassionate Care: A Day for Intellectual and Developmental Disabilities Residential Services Providers

Tuesday, Oct 18, 2016 Offers 5.75 CEUs Register for ID/DD Day at AHCAconvention.org

7:30am - 8:00am

Breakfast

8:00am - 8:40am

AHCA/NCAL ID/DD Update: Mark Parkinson, President & CEO of AHCA/NCAL, and Holly Jarek, AHCA’s ID/DD Committee Chair

8:45am - 9:45am

The Power of One: How One Attitude, One Action, and One Person Can Change the World Speaker: John O’Leary, Live Inspired - www.JohnOLearyInspires.com Session Description: John was a curious nine-year-old boy. Playing with fire and gasoline, he created a massive explosion in his garage and was burned on 100% of his body. Given less than 1% chance of survival, John is proof of the power of the human spirit. His unlikely recovery meant a journey of pain and loss that could have easily been insurmountable. Using his fire story as a backdrop, John will inspire you to take back your life, see the abundant possibility within your professional and personal challenges, and change the world.

9:45am - 10:00am

Break

10:00am - 11:00am

Presidential Election Year and Capitol Hill Update Speakers: Haley Barbour, Governor of Mississippi, 2004-2012; Former RGA Chairman; Former RNC Chairman; Political Director in the Reagan White House, Founding Partner of the BGR Group, and Bob Russell, Esq., Founding Partner of the Simmons & Russell Group Moderator: Clifton J. Porter II, AHCA’s Senior Vice President of Government Relations Session Description: Hear from DC insiders and political experts on the Presidential election happening right around the corner! Gain insight into the current lay of the land and political climate, and get your pressing questions answered.

11:00am - Noon

Participatory Leadership – Encouraging, Empowering and Enlightening Employees and the Millennium Effect Speaker: Robert Simandl, Esq., Simandl Law Group, S.C. Session Description: Time and again, the organizational gurus tell employers that employee engagement is the key to a happy and healthy organization. But what does that mean? Robert Simandl, the senior member of the boutique employer HR law firm of the Simandl Law Group, S.C., will discuss the challenges facing employers in engaging workers to not only “work” but to be a member of a productive team. With over 35 years of experience in advising employers on employee development and organizational development, Mr. Simandl brings the practitioners view on the development and implementation of successful employee strategies.

Noon - 1:30pm

Expo Hall Lunch

1:30pm - 2:30pm

Inside the Brain: Neuropsychological Perspectives on Working with Individuals with Intellectual Disability Speaker: Sarah Miller Coats, Ph.D., ABPP-CN, Neuropsychologist, Private Practice (Sarah K. Miller, PLLC) Session Description: In this session, attendees will consider how underlying brain function affects conceptual, social, and practical skills in individuals with intellectual disabilities. Some emphasis will be placed on the aging brain. Through case studies, participants will discuss how consideration of neuropsychological functioning can guide case management and care planning.

2:30pm - 3:30pm

Rocking Social Media: How to Position Your Organization with New Audiences Speakers: Mark Dickerson, Ed.D., Senior Director, Communications at The Evangelical Lutheran Good Samaritan Society, and Michelle Erpenbach, Director, Content Creation at The Evangelical Lutheran Good Samaritan Society Session Description: The Evangelical Lutheran Good Samaritan Society has made an intentional commitment to growing its social media presence across multiple platforms. While healthcare organizations are often concerned about the dangers of social media from a management and HIPAA standpoint, the Good Samaritan Society has developed approaches that work well for a large, multi-location organization that are also applicable to any organization wanting to reach diverse audiences. Hear more about these approaches that have introduced the organization to new audiences including job seekers and family caregivers. A Special Thanks to Our ID/DD Day Sponsors

Protecting Your Child’s IEP from the Nation’s Testing Craze Parents of children with disabilities need to be proactive and make sure all the time schools are devoting to the preparation and implementation of standardized tests does not swallow up the time that is supposed to be devoted to the implementation of their children’s IEP.

BY DR. MICHAEL BERG, ED.D. igh stakes standardized testing in our nation’s public schools makes regular headlines in newspapers and is often the buzz on social media. The accountability level for teachers and administrators is at an all-time high. Teachers’ salaries and contract renewals are often tied to students’ test results. Schools are being graded based on test scores and often funding is tied to these grades. Parents across the country are participating in “opt-out movements” refusing to allow their children to participate in these high stakes tests because of the huge amounts of pressure being put upon their shoulders. However, regardless of whether or not a student participates in high stakes assessments, with so much riding on the results of these tests it is very likely all students will be affected by them in some manner. It is a good idea for parents of children with disabilities to be proactive and make sure all the time schools are devoting to the preparation and implementation of these standardized tests does not swallow up the time that is supposed to be devoted to the implementation of their children’s IEP (Individualized Education Program). As a parent of a child with a disability, you send your student off to school each day with an assumption that the special education teacher is providing specialized instructional services for the prescribed amount of times listed in the IEP. The IEP you meticulously helped develop includes clearly defined learning goals and objectives that your student is working toward. In addition, prescribed service

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time usually spelled out in minutes per week, to meet these goals and objectives is clearly stated on the services page of the IEP. Parents expect that their child’s IEP is being implemented without interruption of services. Of course, it is unrealistic to think that instructional time for students will never be disturbed. Field trips, fire drills, special assemblies, birthday celebrations, just to name a few, are all typical events that might cause a minor hiccup in the daily schedule. These typical disruptions should be expected and usually do not significantly impact special education services. The vast majority of students with disabilities are required to participate in standardized testing. However, even if the IEP specifies exemption of these tests, do not assume special education services will not be impacted. Schools are almost always short-staffed when it comes to having enough test administrators and special education teachers are often required to administer standardized tests. Most special education teachers administer tests to students with disabilities who require testing accommodations. The odds are your child’s special education teacher will be involved in testing and will not be able to teach to their normal schedule during testing times. Special education teachers can be tied up for several hours per day for several weeks administering standardized tests throughout the school year. So, what do you do to protect your child’s IEP services from being drastically reduced or not provided at all for significant periods of time due to this nationwide testing craze?

1. KNOW THE INS AND OUTS OF YOUR CHILD’S IEP Knowing what is in your child’s IEP is the most important thing you can do as a parent in order to make sure your student is consistently receiving the services he or she is entitled to. An IEP is a yearly prescription of educational services that is tailored to meet the needs of students with disabilities and assist them in reaching designated goals and objectives. It is important to know exactly what services are prescribed in the IEP and how much service time your child is supposed to receive. The IEP will clearly spell out which standardized tests your child will participate in and any required accommodations. If your child is participating in standardized tests, there should be an expectation that some of their instructional services might be interrupted during testing administration times throughout the school year. Often these tests last for two to three hours a day for testing windows of approximately five to 10 days and will naturally cause a disruption to the daily schedule. What is an acceptable amount of lost instructional time? The answer to this question varies depending on the disability of the student and what is considered acceptable by you, the parent. If the testing window is one week, then a few hours each day for that week of instructional interference might be acceptable. However, if your child does not participate in any standardized testing because of the severity of the disability, then it is perfectly reasonable to expect that testing will not interfere with your child’s schedule at all. By knowing what is in the IEP and holding all stakeholders accountable to its implementation you are taking the first step in making sure the nation’s testing craze does not override your child’s daily instruction.

2. KEEP TRACK OF YOUR CHILD’S DAILY SCHEDULE AT SCHOOL There is an assumption that high stakes testing only takes place the last quarter of the

ILLUSTRATION BY AMANDA BERG

school year for one week. This is not true! Almost all districts start benchmarking their students the first few weeks of school and continue at regular intervals throughout the year. Benchmark assessments are tests designed to predict future scores on high stakes standardized tests and monitor students’ academic progress. They can habitually wreak havoc on special education teachers’ daily schedules. Special education teachers are responsible for implementing these benchmark assessments to their students and often the administration is done during times when they would normally be teaching students. Therefore, as a parent, one thing you can do is know your child’s daily schedule. When do they participate in their specialized services? If they are pulled into a resource classroom to work on reading fluency, what time does that group meet each day? If related services such as occupational or speech therapy are prescribed, what days

a n d times are these therapies administered? Once you know the daily schedule, check in often with your child to make sure it is being followed or hasn’t suddenly changed. Answers to questions such as, “Did you go see Mrs. Smith today for reading?” or “How was your speech therapy session today?,” can shed much light on whether or not special education services are happening according to schedule. If your child is not able to verbalize or communicate this infor-

mation to you, email or call the special education teacher and ask similar questions. Most districts will post their high stakes testing and benchmark dates on their calendars

If you are told your child did not receive services due to testing conflicts, ask if and when the missed time will be made up. and during these testing times it would be most appropriate to keep an extra careful eye on daily routines at school. Another way to keep track of your child’s daily schedule is to subscribe to class newsletters, where teachers will often list dates of upcoming tests. Keep a calendar noting the types of tests being administered and their days and times of administration. If you become aware of any missed instructional times that have not been made up, note them on a calendar or on a spreadsheet for later reference.

3. ASK QUESTIONS AND GET ANSWERS Ask the special education teacher and any other support staff and related service providers that work with your child if they will be involved in standardized testing. If they reply that they are, ask for specifics about their involvement while trying to remain empathetic. Most special education teachers must partake in the administration of these tests, but are not happy about it. They would much rather be following their normal schedule and teaching their students. The majority of special education teachers welcome inquiries from parents about standardized testing. Do not feel like you are eparent.com | EP MAGAZINE • August 2016 39

being an overbearing parent by asking, “I understand you are swamped with testing this week, but did you conduct the reading intervention with my child today?,” or “I understand how busy you are with testing this week, but did my child get all 225 minutes of math resource class this week as stated in the IEP?” If you are told your child did not receive services due to testing conflicts, ask if and when the missed time will be made up. Also direct these questions to your school’s principal. Often, the special education teacher’s hands are tied when it comes to changes made to their daily teaching schedules and would be very happy to have parents take their concerns to building level administrators. If you do not get suitable responses from your school building level administrators, take it a step higher and ask the same questions to the district level special education administrator. Additionally, keep a log of each time you make contact, noting the date, time, the person you spoke with, and the outcome of the contact.

tled to compensatory make up time of special education services if your child’s FAPE (Free and Appropriate Public Education) has been violated. Compensatory time is a term that refers to getting back lost IEP service time. Often compensatory time is provided during the regular school day. Sometimes it is provided during summer months if there was an excessive amount of instructional time lost during the school year. If this is the case, a certified special education teacher will either travel to your home, or meet your child at a designated location to make up lost instructional time. If you believe your child’s progress on IEP goals or objectives has been compromised due to the reduction or temporary elimination of prescribed services, you are well within your rights to ask for and receive compensatory educational services from the school district. Students may miss several days or possibly up to several weeks of instructional time due to the implementation of district and state mandated assessments and never get that missed time made up. Depending on the nature of the disability, an absence of special education services for such lengthy amounts of time, could prove detrimental to meeting goals and objectives set forth in the IEP. This is why keeping track of missed time is so important.

If you believe your IEP has been compromised, you may ask for and receive compensatory educational services.

4. KNOW THE LAW AND ADVOCATE So you tried to take preventive measures and not let the high stakes testing craze negatively impact your child’s educational services, but try as you might, you find your child has missed significant amounts of instructional time. It is now time to fall back on the law! Advocating for your child’s education is often an uncomfortable process, but is a necessity. Think of it as being equally important as demanding the best course of medical treatment from your pediatrician for an illness your child might have. Some parents are comfortable advocating on their own. Others prefer to bring a friend or family member to the IEP meeting for moral support. Some parents may even choose to hire a professional special education advocate. All are viable options when advocating for your child to ensure they are not missing services due to standardized testing. In compliance with IDEA (Individuals with Disabilities Education Act), you may be enti40 August 2016 • EP MAGAZINE | eparent.com

STEPS TO REQUEST COMPENSATORY TIME Providing compensatory make-up time is expensive and school districts are reluctant to do this willingly. Often, before granting compensatory time, district level administrators will ask for specific dates and times that you are claiming your child did not receive prescribed special education services. There are several key steps to take when requesting compensatory time for your student. • Step 1: Gather your information. Have a list of dates and times your child missed services due to testing. Make sure this list is detailed and clearly shows which services were missed and for how long they were not provided. • Step 2: Contact your child’s special

education teacher and request an IEP meeting. Specify that you want the district level special education administrator to be present at this meeting because you will be making a request for compensatory time. At this IEP meeting, you will present your concerns about missed services due to testing and explain how the missed instructional time has negatively impacted your child’s progress toward meeting the goals of the IEP. • Step 3: If compensatory services are not granted immediately at the IEP meeting, ask for a specific date when a decision would be made before letting the meeting come to an end. • Step 4: If compensatory time is denied, parents can choose to file due process proceedings. Due process is a right parents have in order to solve disputes with a school district. Disputes are usually resolved through a hearing or through mediation. However, it is important to note, that most districts will not have a case to deny compensatory time if the data shows that your child has not made satisfactory progress toward goal(s) on the IEP and that significant amounts of services have been withheld from your child. Remember, you are your child’s best advocate! Often the stakeholders responsible for the creation and implementation of high stakes testing occurring in our public schools have little knowledge of the needs of students with disabilities and minimalize the impact that testing mandates will have on our children. Loss of instructional time for any reason can negatively impact a student’s progress toward academic and social goals. Testing has its place in public education. However, the high stakes testing craze that is currently sweeping through our public schools should never take priority over the prescribed services in a student’s IEP. • ABOUT THE AUTHOR: Dr. Michael Berg is an Associate Professor of Special Education at Augusta University in Augusta, Georgia. He earned his Ed.D in School Improvement with a concentration in Special Education from the University of West Georgia. He is a Nationally Board Certified Special Education Teacher and has taught students with mild and moderate disabilities for 24 years at the elementary and middle school levels. He is married to Amanda Berg who is an art teacher.

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eparent.com | EP MAGAZINE • August 2016 41

MY GOAL IS TO BE AS HAPPY AS I CAN, TO HAVE MY BOYS BE AS HAPPY AS THEY CAN BE TOO, AND TO SHARE THEIR SUCCESSES WITH ALL OF YOU.

BY KIMBERLEE RUTAN MCAFFERTY ecently I posted a piece in my various venues talking about what I’d learned about autism in the almost 12 years since Justin’s diagnosis. There were the usual variety of comments, some positive, some definitely less receptive (to put it mildly,) and although I usually don’t respond to criticism with a “rebuttal post,” this one has been ruminating for a while.

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42 August 2016 • EP MAGAZINE | eparent.com

So here it comes, people. In the piece I wrote mostly about acceptance, of coming to grips with what severe autism means for my eldest son’s life trajectory. One of the things I wrote was the following: “You will learn that you’ll always worry about what will happen to them after you die. You will learn to live with it.” I stand by those words. I have learned that I will always hate the fact I can’t be with him, loving him, protecting him, and caring for

PHOTO PROVIDED BY KIMBERLY RUTAN MCCAFFERTY

him until his death. If I could change that and still give him a normal lifespan, I would in a second. The thought of someone potentially hurting my boy is horrifying, an ache in my heart that never goes away. But I have learned not to let it paralyze me as it often did in his early years, when I tried so desperately to alleviate the severity of his autism so he would live an independent life. All of our therapeutic interventions did not change the fact that he will need constant care for his entire lifespan. I’ve learned to shelve that fear so that it is not always in sharp focus, so I can be present in my life and be the mother I need to be for both my autistic boys. I’ve accepted his need for lifetime care. I will never embrace it. There are always challenges in our daily

life with Justin. His OCD can be daunting, and sometimes he still has aggressive outbursts. It’s not all lollipops and rainbows chez McCafferty. But the last few years have been so much better than his earlier ones that I’m often inspired to write about his progress. I’ve been told by readers that I’m naïve, to wait until puberty hits, and wished good luck with the “post-21 abyss.” And maybe they’re right. I say this without “snark”— perhaps when puberty hits it will all go to hell in a handbasket, and my primarily sweet, smart, happy tween will become unidentifiable from the boy we’ve raised in the last few years. Maybe he will turn 21 and there will be no good group home placement for him, no quality “day care,” no money for home respite care. Perhaps I will be yelling at my husband to stop working so he can watch our thirtytwo-year-old son so I can get my mammogram. Maybe everything will suck. Or, maybe not. Maybe Justin will have options like my friends’ adult children have had in the past few years. One child is thriving in a group home, in better shape and the happiest he’s been his whole life. A grown son of my friend goes to a daycare center he calls “college” and loves it, and lives peacefully at home. Another friend of mine with two adult children with severe autism (yes, she is awesome) has brokered a deal where her two kids get respite care six and seven days a week respectively, are engaged in outings and activities they enjoy, and love their lives. And just for the record, the last two examples are of autistic adults living large in Jersey. erhaps some of you are thinking, “sure Kim, that’s great for them, but your kid’s in the approaching autism bubble and you won’t have those pretty choices in eight years.” And despite all the autism initiatives I read about daily, that might be my son’s fate. It’s too early to tell. But even if I am harassing my husband in eight years I will never regret writing about or living these last few years, will never feel I was wrong about encouraging others to have hope. Five years ago we were dealing with daily insomnia, toilet training disasters, refusals to eat, daily aggression, and a host of other incredibly challenging issues

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that affected not just Justin, but our entire family. I wish I could have known then how much easier life would get. I wish I would have believed in even the possibility that life would get easier. I would have been a much happier person. I write for several reasons, and to be perfectly honest with you, I write for myself as much as I write for my readers. My computer is a wonderful place for me to vent, said venting keeping me from consuming two pounds of chocolate daily. But I also write for others, in an attempt to pay it forward to other parents, particularly those in the early years of diagnosis who may be feeling bereft of hope. You see, 12 years ago, I walked into Barnes and Noble after having dropped off my twoyear-old son in his pre-school program, purchased a hot chocolate, and settled into the special needs section. At that point I had read several memoirs about autistic kids, all having the outcome of moving to the mild end of the spectrum or losing their diagnoses altogether. I stumbled upon Susan Senator’s Making Peace with Autism and devoured it, let my hot chocolate grow cold. It was the first book I’d read where a moderate to severely autistic child had made progress but remained on that end of the spectrum, the first tome I’d perused where the family and child were happy despite the severity and the challenges autism presented to them. It was the first book that gave me hope that, someday, my family might be happy too even if my child remained severely affected. I’m certainly not comparing myself with the amazing Susan Senator, who remains my “autism parent/writer rock star.” However, I know my missives have helped others, and I’m going to keep at it. I never want to walk around hollowed out with the fear and rage I felt in the early years. My goal is to be as happy as I can, to have my boys be as happy as they can be too, and to share their successes with all of you. I will never give up pursuing safe, productive, and happy lives for them both. I will never give up.• ABOUT THE AUTHOR: Kimberlee Rutan McCafferty is a regular contributor to Exceptional Parent. She is also the author of Raising Autism: Surviving the Early Years, a memoir about parenting her two boys, both of whom have autism. Her new book is available on amazon.com

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An ABLE account is designed to ease financial strains faced by individuals with disabilities by making tax-free savings accounts available to cover qualified expenses such as education, housing, and transportation.

Introduction of

ABLE Accounts in Some States this Summer his summer, certain states will begin introducing ABLE accounts, providing special needs individuals and their families another resource through which to save and invest for the future. Signed into law in 2014, the ABLE Act and associated accounts are modeled after 529 education savings plans – authorizing states to create their own programs that help people with disabilities and their families pay for disability-related expenses, which for many exceed $30,000 annually. With Florida, Nebraska, Ohio and Virginia expected to start offering ABLE accounts this month, and others beginning next year, families should be aware of these new tax efficient vehicles and understand how to use them and incorporate them into a broader financial strategy. Scott MacDonald, Senior Financial Advisor, Merrill Lynch, who specializes in serving the financial planning needs of special needs families and individuals, answers questions about ABLE accounts.

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1. What is an ABLE account and how does it work? Is there a limit to how much money I can put into my ABLE account? An ABLE account is an IRS tax-favored investment account that aids persons with disabilities by allowing them to save for future expenses without interfering with needs-based public benefits, while providing them the right to manage their own assets. ABLE stands for “Achieving a Better Life Experience” and it is similar to laws that govern 529 educational accounts. According to the ABLE National Resource Center, an ABLE account is designed to ease financial strains faced by individuals with disabilities by making tax-free savings accounts available to cover qualified expenses such as education, housing, and transportation. Distributions from the account can supplement benefits provided through private insurances, the Medicaid program, the Supplemental Security Income program, the beneficiary’s employment, and other sources. 44 August 2016 • EP MAGAZINE | eparent.com

ABLE accounts can be funded only up to the annual federal gift tax exclusion amount as determined on an annual basis. In 2016, this amount is $14,000. This means that the entire ABLE account can only be funded the entire year with a total of $14,000, not that multiple people can each fund it with $14,000. Contributions must be made in cash. It is important to remember that the funding of an ABLE account is gift-tax free. When made by a person other than a designated beneficiary, contributions are non-taxable gifts. An ABLE account can only grow to a certain amount before jeopardizing public benefits. If an individual with a disability is receiving Supplemental Security Income (SSI), his or her ABLE account can only grow to $100,000 and not be counted for SSI eligibility. If instead, the person is receiving Medicaid only (and not SSI), the account can grow to larger amounts (defined by each state) without counting against traditional Medicaid eligibility. 2. How do I know if I’m eligible for an ABLE account? How can I access an ABLE account in my state? Are ABLE regulations different in each state? According to Kevin Urbatsch, Esq., national director for the Academy of Special Needs Planners (ASNP), in order to open an ABLE Account, a person must have a “disabling condition that began prior to reaching age 26.” However, this is one of those areas where Congress may be increasing the age requirement. Readers should check the ABLE National Resource Center at http://ablenrc.org/ to see if that age limit has changed. The person opening an ABLE account must swear under penalty of perjury that the person is “disabled” as defined by the ABLE act. The person must also have a signed physician’s statement confirming the disability diagnosis and provide it if requested by the ABLE Plan Administrator or the IRS. “Disabled” means the person must either already be receiving Social Security benefits based on his or her disability or otherwise qualify as “disabled” by the Social Security Administration. This test

THE LONG VIEW: Annual savings programs coupled with prudent professional investment management can create the means to drive the long term financial well-being of the entire family.

is typically different if the person is an adult versus a child. Currently, only a handful of states have launched their ABLE programs, with many more in various stages of legislative approval. An individual will be able to open an ABLE account in any state that has approved the Act, even if it is not their state of residence. State regulations on contribution limits and state tax credits vary widely. It is important to check what benefits and limits may apply in your state and what advantages your state program may offer. The ABLE National Resource Center site has quality information regarding each state’s limits and approval status. 3. What other resources are available to help cover costs of a special needs child? The primary vehicle for a disabled or special needs child continues to be the Special Needs Trust (SNT). An SNT can receive essentially limitless funding from an individual or family and not impact needs based public benefits. SNT’s are typically funded through inheritance, insurance proceeds on the parent’s lives, family gifts or lawsuit settlements, among other methods. Managing and investing an SNT is a more complicated matter than an ABLE account, and requires competent professional trusteeship, financial planning and investment management.

It is important for parents to understand that titling of their assets in retirement plans, wills and trusts can dramatically affect their child’s welfare when the parents’ assets are inherited. Incorrect beneficiary designations, outside of a Special Needs Trusts, can cause the child to be subject to repayment of prior public benefits received. This can lead to a significant loss of the family legacy. Proper legal advice from a specialized attorney is recommended. The Academy of Special Needs Planners offers excellent information, as well as attorney referrals, at http://specialneedsanswers.com Public benefits programs – including state programs such as the Regional Centers of California and similar disabled child programs nationwide – can be the cornerstone of the budget solution for most families. Employment health insurance, Medicaid waiver programs, Section 8 Housing benefits, SNAP food stamps and other federal programs can significantly augment the total family budget when they are properly coordinated. 4. What other actions can I take to ensure my special needs family member is taken care of financially? A comprehensive, multigenerational financial plan – which integrates the parents’ retirement aspirations with the childrens’ current and future special needs – is essential to properly provide for the family with a

special needs member. Determining future needs for special needs children and targeting funding to a Special Needs Trust can make a powerful difference in their lives. Often families do not have a large pool of financial assets to apply to their future goals. Annual savings programs which fund these conflicting aspirations, coupled with prudent professional investment management, can create the means to drive the long term financial well-being of the entire family. Survivorship life insurance policies are frequently used to create a tax free source of wealth to fund the SNT at a crucial change in the special needs child’s life. An interesting tool for parents to start the planning process can be found online at http://specialneedscalc.ml.com Ongoing consultation with a financial advisor who is specialized and experienced in these concepts can be quite valuable to the special needs family. One free item that can help families is to draft a “letter of intent”. This is a non-legal document which outlines the parents’ wishes for the special needs child’s ongoing care after they pass. It can include directives regarding placement, housing, likes and dislikes, triggers, etc. and is a real boon to those who will help care for the child after the parents. A novel approach is to videotape the parents’ message to their child and the caregivers to save for posterity.• eparent.com | EP MAGAZINE • August 2016 45

Back in the 1980s, our village took a chance and reached out. My son learned to believe; although still physically challenged, he now is capable of living independently and has become a talented artist and owner of an international art corporation.

It takes a Whole VIllage BY EOLANE

46 August 2016 • EP MAGAZINE | eparent.com

PHOTO PROVIDED BY EOLANE

The Nigerian proverb “It takes a whole village to raise a child” says it all, especially for those of us raising children with special needs. e is 30 years old now, my son Travis. He is also the Chief Executive Officer of his own international company and the talented artist/illustrator of a series of fictional novels I write called The Jewel Chronicles. This young, successful adult was at birth given two hours to live, then two days which became two weeks, two months, and finally evolved into a maximum life expectancy of two years. I can still remember when he turned three years old and the local fire department threw a city-wide birthday party to celebrate his landmark survival. Of course, we had the fire trucks, water hoses, birthday cake and ice cream with all the local children enjoying the party and the tour of the fire station. The highlight of the party, though, was when the small black and white puppy ran through the crowded room to jump squarely into Travis’ lap, giving kisses, wiggles and joyful yelps of happiness to the young child who was quadriplegic. The firemen had made a point of first meeting with Travis’ pediatrician, the city veterinarian, and myself before reaching out to animal shelters across the state to find the perfect companion for my son. Needless to say, it had to be at least a Dalmatian mix. The veterinarian had nixed the idea of a full-blood Dalmatian due to Travis' specific physical challenges. He had recommended a Dalmatian/ Labrador mix, blending the majestic traits of the Dalmatian with the child-friendly personality of a Lab, and the firemen exhausted all efforts to find such a miracle puppy to celebrate this landmark birthday. In between massive puppy kisses, Travis declared to all present the pup’s new name – Sky! It was a child's perspective, when the pup stood, he was as black as the night sky. But when he rolled over for belly rubs, he was as white as snow with the trademark black Dalmatian spots. That

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day was a joyous day, the laughter, love, and community support we found that day carried us through some of the toughest years of our life. As for Sky, she proved to be a life saver, literally! In addition to being quadriplegic, Travis suffered from sleep apnea; a condition that causes the individual to stop

and no longer was forced to sleep on the floor. Then Sky came into our lives. The first night home, she joyfully jumped into bed and snuggled close to Travis. When he stopped breathing that night, before I could jump up to pull my child close and help him regain his breath, the small pup had already leapt to his chest and was rapidly licking his face. The unexpected activity startled my son awake and he was able to regain his breath on his own. This became a nightly ritual as the two lay together in bed. The hated hospital machine was put away and Sky became his nightly life saver for the next 15 years and I was eventually able to safely retire to my own room at night, knowing full well that Sky had it all under control. he largest frustrations I encountered were those faced by many families of children with special needs. The stress of dealing with a child who is terminally ill played havoc with our family relationships; his father and I separated shortly after his birth, while some members of my family rallied behind us and others distanced themselves, not knowing what to say or how to act in our presence. Strangely, it seemed easier for the community of strangers to come together on our behalf than it did for those closest to us. We became entrenched in daily medical appointments, therapies, emergency room treatments. Time after time I listened to medical professionals cautioning me not to build up my hopes, family members advising me not to become too close for I would lose all when Travis died. Social workers provided counseling and hospice information, neighbors offering friendly and concerned advice, fellow parents providing comparisons and stories of other families. It got to the point I wanted to grab a megaphone and loudly proclaim to all, “Please do not bury my

T Title: Choices Author: eolane Paperback: 180 pages Publisher: authorhouse uK (2016) ISBN: 1524632457 Available on Amazon, Barnes & Noble or www.Eolane.Global breathing when asleep. He hated the hospital equipment he was forced to wear that would breathe for him at night and would often tear it off in frustration and tears after going to bed. I began to sleep on the floor next to his bed to insure he continued to breathe through the nights. The previous Christmas, a local radio station had heard about this situation and had donated a custom bed that raised Travis’ bed just enough to allow for a roll-a-away bed to fit underneath. At bed time, I merely rolled the bed out from underneath his,

eparent.com | EP MAGAZINE • August 2016 47

son until he is dead!” I would lock myself in the bathroom at night after my son fell asleep and cry until I collapsed on the floor weak and exhausted. Then one sunny day a young college student who lived down the street knocked on my door and told me to “take the day off.” She and her friends were taking Travis and Sky to the beach for the day, and a local spa was treating me to a special “me” day of my own. I was stunned, speechless. By the end of the day, I had returned a different person and my son had found new friends, college kids from the local university, who came regularly to treat he and his dog to a day away from mom. Am I recommending a day at a spa will make it all better? Obviously not, but it certainly won’t hurt!

What was the outcome of all the little things my community did for myself and my son? What was the eventual result of me begging the medical world not to bury my son before he was dead? What did the support of all those college kids do for us through the years? I was encouraged to return to college where I earned a degree in Political Science and a Masters Degree in Counseling and Education. My family and dozens of college students voluntarily took turns taking care of Travis so I could go to school and work full time towards a career. The medical professionals banded together, determined to help Travis survive and live a healthy, productive life; not just endure and control symptoms until he died. A local swim coach donated his time

So you ask, “What can I do for my child born with special needs?” You can believe, believe in your child, believe in their future, in your future, in yourself. What I am recommending is to take advantage of the respite services offered in your community; allow your children the right to live their own lives without you hovering over them every second. It will build their self-confidence and their perceptions of self-worth. Allow your community to step in and help; if need be, actively seek out activities and services available to you. Unfortunately, in America, we have lost the Old World values of the small villages of yesteryear. We stick to ourselves, rarely even speak to our neighbors. Many times it is due to fear, sometimes it is merely the stress of everyday life does not lend to leisurely chats over the fence. Sadly, it is not because we don't care. I am a living example of how much we Americans truly can care; how much we will give to help another, especially someone in which we have something in common –such as living in the same community. 48 August 2016 • EP MAGAZINE | eparent.com

to teach Travis to swim, working with him from the age of two months old and building him into a Special Olympics gold medal winner at a young age . This resulted in Travis learning to believe in himself and believe he could overcome anything. His friendships with the college students taught him that, although different from others, he had something to contribute to society and was valuable to all. The support we received from all those in our “village” encouraged us to automatically reach out and help others in need; we learned to “pay it forward.” Life has not been easy on us, I’ll be honest with you. It has been filled with pain and setbacks and delays. We have made scores of mistakes over the years. There have been many more nights I have cried in a locked bathroom over the decades. It is a struggle; it will continue to be challenging. However, because we have learned that it truly takes a village, we

have willingly opened our doors and our hearts to those around us. We have learned to graciously accept help when it is offered just as we are often the first to offer help to others around us. ack in the 1980s, our village took a chance and reached out. As a result, I took a chance to believe in a future for my son and me. This belief, in turn, led me to a career that has taken my son and I all over the World, where we found other villages and neighbors offering their hearts, love and expertise to help. In turn, my son learned to believe; although still physically challenged, he now is capable of living independently and has become a talented artist and owner of an international art corporation. In my retirement, the two of us have partnered to author and illustrate suspense novels which are based on our global travels. We have purchased a century-old farm on the Wild Atlantic Way in County Kerry, Ireland, where we will open an art gallery and eventually design and build a 4D theatre which will allow special needs and physically challenged individuals the ability to experience the wonders and thrills of Ireland, from their castles to the recent home of Star Wars, Skellig Michael, to the simple thrills of an Irish coastline. So you ask, “What can I do for my child born with special needs?” You can believe, believe in your child, believe in their future, in your future, in yourself. Listen to your child’s desires, their hopes, their dreams, their fears. Face them together, not alone locked in your house; together with their medical professionals, their teachers, their friends, their community. “It takes a whole village to raise a child.” Fact or fiction? Take it from an author who writes fiction, it's a fact! Believe, accept, and pay it forward. No matter what the ultimate outcome, it will be worth it! •

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ABOUT THE AUTHOR: Eolane and her son Travis write/illustrate a fictional suspense series based on their life travels titled The Jewel Chronicles. The first of the novels, Whisper in the Wind, was successfully released last year. The latest novel, Choices, has just been released for publication and a new novel is now underway. You can purchase the suspense novels online at Amazon, Barnes & Noble or via the author website: www.Eolane.Global

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

50 SUICIDE PREVENTION AMONG AMONG RETURNING TROOPS By Jennifer Woodworth, PSY.D. MILITARY LIFE

53 AN OVERVIEW OF SPECIAL EDUCATION PUZZLES & CAMO

54 MOVING FORWARD By Shelly L. Huhtanen

U.S. MILITARY H

Veterans comprise 20 percent of national suicides, resulting in about 8,000 deaths, with approximately 22 veterans dying by suicide every day.

SUICIDE PREVENTION AMONG RETURNING TROOPS BY JENNIFER WOODWORTH, PSY.D. uicide is “death caused by self-directed injurious behavior with an intent to die as a result of the behavior” (Center for Disease Control). According to the Substance Abuse and Mental Health Services Administration, 40,000 people in the United States die by suicide every year. On a larger scale, there are 25 suicide attempts for every completed suicide and many others, approximately 9.3 million people in 2014, who have serious suicidal thoughts. Veterans comprise 20 percent of national suicides, resulting in about 8,000 deaths, with approximately 22 veterans dying by suicide every day. Three out of five veterans who died by suicide were diagnosed as having a mental health condition, which means that they were in contact with at least one medical professional prior to their suicide. There are no one set of “typical” signs of suicide, even though there are contributing factors and many signs to look out for. Sometimes the loss of a loved one happens unexpectedly or without any noticeable changes in the factors listed below, other times there are signs that are missed or mini-

S

50 August 2016 • EP MAGAZINE | eparent.com

mized by the person suffering or the family member. The impact of suicide is long-term and far-reaching. There are many questions surrounding suicide and, typically, answers are complicated or left unanswered. Mostly, the people left behind question the signs they might have missed or wonder what they could have done to prevent the loss. Many people have thoughts of death or dying that may be fleeting or cross their mind from time to time; however, chronic suicidal thinking may include a plan or preoccupation with death. Below are some factors that might contribute to suicidal thoughts: • Experience of a stressful life event (divorce, loss of child/family member, loss of job, marriage) • Mood disorder (depression or anxiety) • Trauma (from combat, sexual assault, car accident) • Financial problems • Chronic pain • Substance use (alcohol, pain medication) • Relationship in distress • Feeling persecuted because of your identity • Perceived lack of support from family or friends • Family history of suicide

H U.S. MILITARY Following through on suicidal thoughts is often seen as the only solution to the person’s current situation. Below are factors contributing to suicidal behavior; remember, these are risk factors not necessarily things that caused the suicide. • Continued substance use • Impulsive behavior; not thinking about consequences of actions • Hopelessness (thoughts that things are not going to get better) • Access to a weapon or other chosen method (medication) • Previous attempts of self-harm or suicide • Recent hospitalization for depression or substance use All of the above factors relate to those who find themselves thinking about death or dying. There are multiple complicating factors for veterans, or those currently serving in the military. Again, each person experiences and processes events differently and these may or may not increase risk for suicidal thoughts or gestures. • Multiple traumatic events occurring over a short period of time (lives lost, witnessing death, person’s life was in danger, decisions led to unexpected outcomes)

• Returning home to a family with certain expectations • Feeling emotionally disconnected from family • Denying help due to fear that it will impact career • Emotional instability or mistakes being made at work leading to questions from superiors • Feelings of guilt and/or shame • Not feeling safe or feeling constantly threatened • Unrealistic expectations of self or others at work or home • Access to weapons • Continually being around others who have also experienced trauma • Stressful work situations, long hours • Moving to a new unit or duty station Protective factors are factors that may assist a person in reaching out for help instead of following through on their plan and can moderate some of the contributing factors to suicidal thoughts and gestures. These may include: • Accessing treatment for any diagnosed medical or mental health condition • Awareness of warning signs that might lead to suicidal thoughts • Being honest about any suicidal thoughts to medical providers

INVISIBLE WOUNDS: SUICIDE PREVENTION RESOURCES Veteran’s Crisis Line, in partnership with SAMHSA’s National Suicide Prevention Lifeline, connects veterans in crisis and their families and friends with qualified, caring Department of Veterans Affairs (VA) responders through a confidential toll-free hotline, online chat, or text. Veterans and their loved ones can call 1-800-273-8255 and press 1, chat online, or send a text message to 838255 to receive confidential support 24 hours a day, 7 days a week, 365 days a year. www.veteranscrisisline.net

Veteran’s Affairs: Resources, warning signs, crisis line www.mentalhealth.va.gov/suicide_prevention

Department of Veterans Affairs Health Services Research & Development Service: Strategies for Suicide Prevention in Veterans www.hsrd.research.va.gov/publications/esp/Suicide-Prevention-2009.pdf

Military OneSource www.militaryonesource.mil/phases-military-leadership?content_id=268663

Real Warriors: Family support www.realwarriors.net/family/support/preventsuicide.php

Center for Disease Control: Violence and injury prevention www.cdc.gov/violenceprevention/suicide/definitions.html

• Attending appointments as scheduled • Taking medications as prescribed • Being involved in the community (such as religious organization, sports) • Spending time with supportive people • Engagement in consistent physical activity • Awareness of triggers (anniversaries, birthdays, certain events/sounds) and having a safety plan in place • Structure of work routine • Willingness to try medical and psychiatric interventions presented by professionals • Cultural and religious beliefs that discourage suicide as a problemsolver • Learning new skills to manage emotions and resolving conflicts If you notice a family or friend exhibiting a combination of these warning signs, do not ignore them. This might be the only way they know how to reach out for help and, with your vigilance, can be directed to resources that can assist them in recovery. • Talking about wanting to die or kill oneself • Looking for a way to kill oneself • Talking about feeling hopeless or having no reason to live • Talking about feeling trapped or being in unbearable pain • Talking about being a burden to others • Increasing the use of alcohol or drugs • Acting anxious or agitated • Engaging in risky, dangerous, or reckless behavior (speeding, picking fights, unsafe sexual encounters) • Sleeping too little or too much • Withdrawing or feeling isolated • Showing rage or talking about seeking revenge • Displaying extreme mood swings (excitement shifts to rage or depression) What you can do in the moment if you suspect someone is currently suicidal: • Ask them if they are thinking about eparent.com | EP MAGAZINE • August 2016 51

U.S. MILITARY H

•

•

•

•

killing themselves. (This will not put the idea into their head or make it more likely that they will attempt suicide) Do not try and persuade the person not to do it, just listen without judging and show you care. Do not keep this information a secret or tell the person you will keep it private. Stay with the person (or make sure the person is in a private, secure place with another caring person) until you can get further help. Remove any objects that could be used in a suicide attempt.

• Call SAMHSA’s National Suicide Prevention Lifeline at 1-800-273TALK (8255) and follow their guidance. If danger for self-harm seems imminent, call 911. EVIDENCE BASED TREATMENT There are effective treatments for suicidal thoughts in non-emergency situations. Exploring these options can assist in decreasing or eliminating suicidal thoughts and/or gestures and can create an increased understanding of oneself. Psychotherapy: a therapist can assist in creating a safety plan, calming strategies, emotional regulation techniques,

IIT’S T’S Y YOUR OUR O C CALL ALL © 1/12 VHA

Confidential help for Veterans and their families

Confidential chat at V VeteransCrisisLine.net eteransCrisisLine.net or text to 8 838255 38255

52 August 2016 • EP MAGAZINE | eparent.com

and ways to tolerate distress. Therapy can also address underlying issues that resulted in the suicidal thoughts. Therapy should be a collaborative process which works towards your goals. Medications: visit your primary care physician or psychiatrist to consult about medications that can assist in reducing symptoms of depression, anxiety, or other interfering factors that may be leading to suicidal thoughts. Sleep, or lack thereof, can be a major contributing factor to stress. Treatment for addiction: recognizing that you are abusing a substance can be shameful in itself but also empowering. Treatment leads to healthier medical and mental health and can include outpatient, inpatient, or residential treatment. Treatment might include detoxification, education, groups, and attending self-help meetings. Involving family in care: keeping your family informed of mental illness and how they can be supportive is important in the recovery process. They will also be able to build their own set of coping skills and can improve communication among family members. SUPPORT FOR SPOUSES, PARENTS AND CHILDREN When supporting a family member or friend who is experiencing suicidal thoughts or behaviors, it is important to take care of yourself as well. You can access resources about suicide and increase your knowledge about what to do in a crisis. Take advantage of mental health services for yourself, participate in the community, seek social support from others, and continue to engage in healthy eating and sleep habits. • ABOUT THE AUTHOR: Jennifer Woodworth is a licensed clinical psychologist in private practice in Vista, CA. She has worked in the mental health field for seven years. Her husband is retired from the Marine Corps and she has three children ages six, eight, and ten.

MILITARY LIFE AN OVERVIEW OF

SPECIAL

EDUCATION

earning how to navigate the special education system can be difficult for any family, but it can be an even greater challenge for military families whose educational environments are constantly changing. Military OneSource offers tools and resources to help make things easier for you and your family. Start here to learn about the special education process, including: •Eligibility • Relevant regulations • Moving • Moving overseas • Graduating or leaving school Special education is specially designed instruction provided to meet unique needs of children with special needs, ages 3 through 21. Let's take a look at some of the basics.

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and Special Education Services to Eligible DoD Dependents,” April 11, 2005.

MOVING The act also protects your child's educational progress when you move to a new school district. School districts must provide comparable services that honor the previous school's individualized education plan. Keep in mind, the new school district may not necessarily recreate the same program. Bring current copies of your child's IEP and eligibility records before transferring to start similar services immediately in your new location.

ELIGIBILITY

MOVING OVERSEAS

The Individuals with Disabilities Education Act assists with early intervention services for eligible children, birth to age 3, and special education services for eligible children, ages 3 to 21, in three specific areas: • Identification • Evaluation • Delivery Children qualify for special education based on guidelines set by the state and Department of Defense.

The Department of Defense Education Activity special education website lists special education relocation suggestions and contacts for families moving overseas. Parents should contact the responsible special education coordinator if a child receiving special education also requires: • Special equipment • Assistive technology • Individualized paraprofessional support

RELEVANT REGULATIONS

GRADUATING OR LEAVING SCHOOL

The U.S. Department of Education uses specific regulations that implement the Individuals with Disabilities Education Act in public schools in the United States and its territories. States then create guidance to supplement these regulations. You can find state regulations on state education agency websites. The Department of Defense school system operates under Department of Defense policy as outlined in Department of Defense Instruction 1342.12, “Provision of Early Intervention

Young adults with disabilities can find a number of continuing education and work opportunities within their communities. You can help find these opportunities by calling your local state vocational rehabilitation program. Understanding and navigating the special education process can be overwhelming, so make it as smooth as possible with these tips and resources. • – Military OneSource

HELPING HAND: Military OneSource offers tools and resources to help make the special education process easier for you and your family.

eparent.com | EP MAGAZINE • August 2016 53

PUZZLES & CAMO

SHELLY HUHTANEN

Moving Forward We need to focus less on creating barriers and identifying what makes our children with disabilities different and focus our efforts towards tearing down barriers.

A few weeks ago, I watched a TED talk about children with disabilities presented by Torrie Dunlap. Torrie has worked with children with disabilities for years and what she discussed was mind blowing. When I say mind blowing, I mean it forced me to question my mindset on how I parent my own child with autism. Have I spent too much time treating him as if he is so special to the point that I have been advocating for him to be “separate”? I think there needs to be more discussion on how we include children with disabilities. We need to focus less on creating barriers and identifying what makes our children with disabilities dif54 August 2016 • EP MAGAZINE | eparent.com

ferent and focus our efforts towards tearing down barriers. The more we separate children with disabilities from children who are labeled as typical, we create an environment where children with different abilities are assumed they can’t achieve or learn. It also teaches typical children, that children who have different abilities should not play, learn or interact with other children. When there is more focus on creating events and classrooms dividing children based on abilities, we are overcorrecting the problem that we had 60 years ago

that involved hiding and institutionalizing children based on society’s labels. In Torrie’s talk, she discussed two different types of conceptual models of disability, the medical model and the social model. The medical model focuses on what we need to do to fix our children. We spend most of our time analyzing what makes each child different from other children. This model leads us down the path of separation. When we think of the medical model, we assume that we need separate events for children with disabilities. When I asked

myself the question of why parents advocate for separate events for their children with different abilities, the thought that came to mind was that it was safe and free from judgement. Then I started to question my own way of thinking. With the medical model, I have already made the determination that if I keep my son separate from others, he will stay safe and will be free from other people judging him, but is that the right answer? The second option, the social model, views people with disabilities differently by identifying systemic barriers that lead toward a more restrictive environment and in turn, work to break down those barriers to build a more inclusive way of living for people with disabilities. Instead of creating ways to separate children based on their abilities, the social model focuses on ways to include all children. I know, as a mom of a child with autism, I am guilty of focusing on events and choosing educational settings that represent the medical model. I’m learning that in order for Broden to grow as a person and for him to become more independent, I need to move towards a more inclusive approach. hinking about my neighbors moved me to start changing my mindset on how I integrate Broden. Our family has grown close to Nicole and Al as we have spent more time together. It started with talks in the backyard, to asking to watch each other’s dogs while we were on vacation, to hour long talks in each other’s homes after a long day of work. I remember when our neighbor, Nicole, started to ask more questions about Broden and then asked me how she could care for him so I could go to the store. More interaction between Broden and our neighbors allowed them to start building a relationship. He would acknowledge them when they said hello and would come downstairs and sit on the couch when they would come to visit.

T

A few weeks ago, I received a text message from Nicole saying that Broden had left our house, walked next door to their house and they needed help. I was scared because this was the first time Broden had independently left our home and, to be honest, I was also embar-

There are many children with disabilities, including my son, that need special accommodations. I fully support identifying those needs and ensuring they are available, but I don’t agree with segregation. With segregation, we are robbing our children with disabilities of ways to experience life, and we’re stealing their ability to take advantage of opportunities rassed. I thought to myself, “They must be annoyed with Broden to have him just barge into their house.” Running over, I was already planning out how I was going to apologize profusely. When I ran in the door, I was already repeating, “I’m sorry” over and over again. Nicole ran over to me and grabbed my arm and said, “No, I didn’t text you to tell you to come get him. I texted you for help so Al and I could figure out what he needed. I think he wants on our Wifi, so I’m putting it on his iPad.” I stood there in their hallway speechless and then repeated, “I’m sorry. He’s never done this before.” Nicole and Al smiled and Nicole said, “No, this so awesome Shelly. He knows us and he actually put his hand on my arm to get my attention! I just needed

to figure out how we could help.” hy was I so focused on how I was going to apologize and why did I assume Broden was going to be an annoyance to them? Why didn’t I spend more time teaching them about Broden so if he came over in the future, they would know what to do? Maybe because I was so focused on keeping him separated from others and I should have done a better job of finding ways to include him— because the more I include him in neighborhood gettogethers and other outings, others will learn how to communicate and work with him. A week after Broden’s infamous “jailbreak”, I was sitting out on the back porch watching Broden enjoy our neighbor’s swing set. Al was leaving the house and I don’t think he saw me, but he saw Broden. He smiled at Broden and said hello. Broden looked over and did a quick wave to acknowledge him. Al giggled to himself and walked up the stairs to his Jeep. It felt good to know that Al saw Broden that morning and took the time to engage him. Broden can never have enough of this in his life. There are many children with disabilities, including my son, that need special accommodations. I fully support identifying those needs and ensuring they are available, but I don’t agree with segregation. With segregation, we are robbing our children with disabilities of ways to experience life, and we’re stealing their ability to take advantage of opportunities. After watching Al smile that morning, I realized we also rob the rest of society the joy our children with disabilities bring to our own lives. As parents, we see our children as gifts and we need to share the joy they bring to our lives. •

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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.

eparent.com | EP MAGAZINE • August 2016 55

PRODUCTS AND SERVICES AQUATICS

(Pennsylvania)

(New Hampshire)

VALLEY FORGE EDUCATIONAL SERVICES

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

ASSISTIVE TECHNOLOGY (New Hampshire)

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

AUGMENTATIVE COMMUNICATIONS (New Hampshire)

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

AUTISM (Arizona) (New Hampshire)

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

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

56 August 2016 • EP MAGAZINE | eparent.com

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

EDUCATION (New Hampshire)

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

SCHOOLS/CAMPS/RESIDENCES (Massachusetts)

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

THE BADDOUR CENTER 3297 Highway 51 S. Senatobia, MS 38668 P: 662-562-0100 F: 662-562-0114 E: [email protected] www.baddour.org Y.O.U.R. summer program is a unique respite for children and young adults (ages 16-35). www.baddour.org

Services: (Pennsylvania)

(Missouri)

HMS SCHOOL FOR CHILDREN WITH CEREBRAL PALSY

YOUTH RALLY COMMITTEE

4400 Baltimore Avenue Philadelphia, PA 19104 P: 215-222-2566 F: 215-222-1889 www.hmsschool.com E: [email protected] HMS is a day and residential school in Philadelphia for students up to age 21 who have complex, multiple disabilities.

INCONTINENCE PRODUCTS SOSECURE BY DISCOVERY TREKKING 919 Ironwood Street Campbell River, BC V9W 3E3 P: 877-551-6577 F: 250-286-6576 E: [email protected] www.SOSecureProducts.com Reusable, long-lasting washable SWIM Diapers. Wide range of sizes. Available in Child, Youth, or Adult styles. Discreet & Effective.

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

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

(New Jersey)

MATHENY MEDICAL AND EDUCATIONAL CENTER 65 Highland Avenue Peapack, NJ 07977 P: 908-234-0011 F: 908-781-6972 E: [email protected] www.matheny.org The Matheny Medical and Educational Center in Peapack, NJ, is a special hospital for children and adults with medically complex developmental disabilities; a special education school for students, ages 3-21.; and a comprehensive outpatient center meeting the needs of people with disabilities in the community. (Pennsylvania)

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

ADVERTISE IN EP MAGAZINE Exceptional Parent is an award-winning publishing and communications company that has provided practical advice, emotional support and the most up-to-date educational information for families of children and adults with disabilities and special healthcare for over 45 years.

VALLEY FORGE EDUCATIONAL SERVICES

Physical:

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

CROTCHED MOUNTAIN SCHOOL

SPEECH & LANGUAGE (New Hampshire)

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

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

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

VAN/VAN CONVERSION DEALERS (Florida)

NMEDA SPORTS/RECREATION/FAMILY 3327 West Bearss Avenue

9120 Double Diamond Parkway, Suite 1062 Reno, NV 89521 P: 800-433-2573 F: 775-883-2384 E: [email protected] www.americanswing.com We offer adaptive swings and sets that can improve a child’s quality of life.

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

THERAPY

VISION AIDS

Creative Arts:

(Kentucky)

(Nevada)

AMERICAN SWING PRODUCTS, INC.

(New Hampshire)

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

CROTCHED MOUNTAIN SCHOOL For information, contact: Stefanie Valenzano Sales & Marketing Manager Tel: 201-274-5805 [email protected]

(New Hampshire)

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

AMERICAN PRINTING HOUSE FOR THE BLIND, INC. 1839 Frankfort Avenue P O Box 6085 Louisville, KY 40206-0085 P: 800-223-1839 F: 502-899-2284 E: [email protected] www.aph.org Founded in 1858, APH creates educational, workplace and life-style products and services for people who are visually impaired.

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01019-03-18-2016-Flyer

Military Families needed for Research Study