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PLUS: United StateS Military Section EXCEPTIONAL PARENT MAGAZINE

BACK TO THE BASICS:

FEBRUARY 2018

THE FAMILY RESOURCE NETWORK’S CENTER on NUTRITION & DISABILITY

GENETIC ALLIANCE: DIET & NUTRITION

FROM BABIES to TEENS PLUS: AADMD

DIET & NUTRITION ISSUE:

CARING FOR

TELEHEALTH & CHILDREN WITH DISABILITIES

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A CHILD WITH A FEEDING TUBE

CONTENTS

FEBRUARY 2018 VOLUME 48 ISSUE 2

diet and nutrition

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A N N UA L

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DIET & NUTRITION GENETIC ALLIANCE

20 DIET AND NUTRITION: FROM BABIES TO TEENS

38

COVER STORY

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By Adeola Sonaike, PHP, MPH,CHES

28 PARENT’S PERSPECTIVE: CARING FOR A CHILD WITH A FEEDING TUBE

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By Jordan Capizola and Lillian Duffield

24 BACK TO THE BASICS

ANXIE

THE FITNESS PRIORITY

16 LET’S TALK ABOUT STRESS By Kristin McNealus, DP, DPT

By Julie and Tony Bombacino

32 THE RESILIENT CAREGIVER By Lauren Agoratus, M.A.

56 HELPING PARENTS IN MILITARY FAMILIES TO DECREASE STRESS AND ANXIETY By Angela Shaw and Reanna Shaw

FEATURES 38 STARTING ‘EM YOUNG By Rebecca Ralston

43 BUILDING SUPPORTIVE, PERSON-CENTERED COMMUNITIES FOR ADULTS WITH AUTISM By Donna M. Autuori

46 WELCOME TO GIGI’S PLAYHOUSE

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50 RAISING AWARENESS OF THE BENEFITS OF MUSIC IN THERAPY 52 MY SON’S AUTISM DIAGNOSIS By Kimberlee Rutan McCafferty

ON OUR COVER When the Bombacinos found out that their son AJ would need a feeding tube for the rest of his life, they faced numerous challenges. Learn about them and much more in our Annual Diet and Nutrition Issue. Coverage begins on page 20. Photograph by Joseph Gonzalez, Blackbean Photography

EXCEPTIONAL PARENT | EP Magazine • February 2018 1

CONTENTS DEPARTMENTS ANCORA IMPARO

FEBRUARY 2018 VOLUME 48 ISSUE 2

6

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4 ON EARLY WARNING SYSTEMS By Rick Rader, MD

6 WHAT’S HAPPENING 8 NEW PRODUCTS AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE AND DENTISTRY

12 TELEHEALTH AND CHILDREN WITH DISABILITIES By H. Barry Waldman DDS, MPH, PHD, Lisa Bard Levine, MD, MBA Andrew Schwartz DDS, FACD, Rick Rader, MD, FAAIDD, DHL (Hon) and Steven P. Perlman DDS, MSCD, DHL (Hon)

64 PRODUCTS & SERVICES

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

MILITARY SECTION

MILITARY SECTION 60 HELPING PARENTS IN MILITARY FAMILIES TO DECREASE STRESS AND ANXIETY By Angela Shaw and Reanna Shaw PUZZLES & CAMO

61 NEVER FORGOTTEN By Shelly Huhtanen MILITARY LIFE

62 GIVE YOUR CHILD A HAPPY, HEALTHY START

56 HELPING PARENTS IN MILITARY FAMILIES DECREASE STRESS AND ANXIETY By Angela Shaw and Reanna Shaw PUZZLES & CAMO

61 NEVER FORGOTTEN By Shelly Huhtanen

EP FOR FREE!

MILITARY LIFE

62 GIVING YOUR CHILD A HAPPY, HEALTHY START

THE MISSION OF EXCEPTIONAL PARENT MAGAZINE IS TO GATHER AND SHARE INFORMATION AS TOOLS FOR POSITIVE CHANGE FOR THE SPECIAL NEEDS COMMUNITY.

To subscribe to the free eMagazine or for the print magazine ($95 per year) go to: http://ep-magazine.com/so.php

2 February 2018 • EP Magazine | EXCEPTIONAL PARENT

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

Information and Support for the Special Needs Community

VOLUME 48 ISSUE 2



ESTABLISHED 1971

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

Len Harac

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

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

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

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

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

EP EDITORIAL ADVISORY BOARD

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

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

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

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

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

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

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

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

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

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

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

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

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

Endorsed & AL ME DICI NE

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

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

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

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

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

EXCEPTIONAL PARENT | EP Magazine • February 2018 3

ANCORA IMPARO

RICK RADER, MD



EDITOR-IN-CHIEF

WISPS TO WHINES: Native Americans used smoke signals as early warning systems, and Scottish physicist John Robison, who invented the first siren in 1799, inspired this massive electric air raid unit in built in 1940s Toronto.

On Early Warning Systems It falls upon parents, clinicians, teachers, job coaches, direct support professionals, friends, siblings and case managers to understand what constitutes an early warning system for the individuals they care about, treat and support.

Several days ago, over a million residents in Hawaii were horrified to receive a cell phone warning that North Korea had launched a nuclear missile so the residents needed to seek immediate shelter. What put them into a mass panic was the ominous statement “This is not a drill.” It wasn’t a drill or an actual attack, but a blunder. Authorities said the warning was sent during a shift change at the state’s Emergency Management Agency when a worker doing a routine test hit the live alert button. That worker has been reassigned, hopefully, to a room where his only access to a “button” is on the Keurig coffee maker or in the elevator. Seventy-six years ago, there were no warnings when the Japanese attacked Pearl Harbor. No horns, sirens, bells, whistles, shouts, radio alerts, banners or flags, smoke signals or cannons; just the attack; an attack without a warning. The attack resulted in the loss of 2,403 American lives, with an additional 1178 wounded. Since the earliest civilizations, it was

imperative to alert citizens to impending disasters or invading armies. They needed time to seek shelter, prepare to fight, run, hide or cover their heads. Nature is pretty clever and has devised her own early warning systems. We know how to avoid spoiled fruits and vegetables by looking, smelling, feeling, and squeezing them. Nature provides us with the warning signs. Birds alert each other of predators with their warning calls. Some birds are even capable of recognizing calls from other species and can distinguish if those early warnings apply to them. A wave of warning calls spreads from one area to another at more than 100 miles per hour, giving vulnerable birds ample time to take cover. Shakespeare demonstrated a form of an early warning system in Julius Caesar when he offered, “Beware the Ides of March.”

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One of my earliest and most memorable experiences with early warning signs (aside from the strange noise coming from the rear wheel of my Schwinn Black Panther bicycle) was my introduction to the doorsock on the doorknob of my college dorm room. In order for early warning signs to be of value, it is the necessity to know what they represent and the appropriate response. It certainly would have been more of an effective signal if I knew that a sock (or a necktie) over the doorknob signified that one’s roommate was engaged in sexual behavior and it was time to go to the library (even if it was closed). Jars of chili peppers have early warning systems on the label. They alert us to which ones are approaching the satanic level. While the names Red Savina habanero or Bhut Jolokia ghost pepper don’t describe their place on the Scoville scale (measurement of the spicy heat of

ILLUSTRATION BY ARNOLD LORNE HICKS; PHOTO COURTESY CITY OF TORONTO ARCHIVES

WHAT’S HAPPENING peppers), we can understand the difference between a picture of a pink-colored tongue and a fiery red one. One of the earliest early warning systems was invented by the ancient Mayans and it still works today. In 1200 the Mayans built a temple as a tribute to the God of the Wind. The temple contains an intricate web of holes that cause an extremely loud whistling sound when early hurricane force winds blow in from the Caribbean Sea. The system is as reliable as the most modern computer predictive analytic models used by the most sophisticated meteorological agencies in the world. The smoke signal is one of the oldest forms of long-distance warning systems. In ancient China, soldiers stationed along the Great Wall would alert each other of impending enemy attacks by signaling from tower to tower. Native Americans used a sophisticated array of smoke signals to announce hunting, migration, meetings and attacks. Australian Aboriginals would send up smoke to notify others of their presence, particularly when entering lands which were not their own. The famous Midnight Ride of Paul Revere (and his under acknowledged partner William Dawes) served as an iconic “early warning system” at the start of the American Revolution. Revere instructed the sexton of the North Church to send a signal by lantern to alert colonists as to the movements of the British troops. They used the code, “One if by land, and two if by sea.” This allowed the colonists to dispatch additional troops into battle. Contrary to pop culture, Revere did not cry out “The British are coming.” His mission depended entirely on secrecy. According to Thomas Holmes, until World War II, the main types of sirens were church bells. “This began to change, however, in the year 1799 when a Scottish physicist by the name of John Robison invented the siren. His invention was not intended to be a warning device, but to be a musical instrument. During the 1950s, at the height of the Cold War, the United States established CONELRAD (Control of Electromagnetic Radiation), a system of emergency broadcasting using radio or TV stations. It was

intended to allow continuous broadcast of civil defense information. It was a system that shut off radio transmission on all channels or stations, allowing only designated stations to continue to broadcast. After several minutes, those stations would go off and others would be broadcasting. It was designed to confuse enemy aircraft who might be navigating using radio direction finding. he human body has its own “early warning system.” Elizabeth Thornton, author of historical romance novels, writes, “Most of us know when we are about to react emotionally. We can feel it. Often there is a brief warning before the amygdala hijack. For some of us, it is butterflies in the stomach; for some, it is an increased heart rate, and for others, it is a feeling of agitation.” While individuals with intellectual and developmental disabilities undoubtedly experience these same early warning signs, they may not be able to interpret, understand, express and share them with others. It falls upon parents, clinicians, teachers, job coaches, direct support professionals, friends, siblings and case managers to understand what constitutes an early warning system for the individuals they care about, treat and support. This ability, this insight, this appreciation can only be achieved through familiarity over time. The need for “staying power” in relationships with individuals with complex disabilities remains the number one tool for insight and for continuity of care. It also remains one of the most significant obstacles, impediments and stumbling blocks in providing significant and meaningful supports. Norman Cousins, author of Anatomy of an Illness, pointed out the value of knowing someone, really knowing someone when he offered, “History is a vast early warning system.” •

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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

PCPID RELEASES 2017 REPORT

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he President's Committee for People with Intellectual Disabilities (PCPID) recently released its 2017 Report, “America’s Direct Support Workforce Crisis: Effects on People with Intellectual Disabilities, Families, Communities and the U.S. Economy.” The NADSP (The National Alliance for Direct Support Professionals) is proud to have assisted the University of Minnesota's Research and Training Center on Community Living in preparing this report and especially proud to highlight the work from some of our certified direct support professionals and stories from families and individuals who receive direct support services with whom we are honored to collaborate. The Report also shares our National Competency Areas and Code of Ethics, among other NADSP contributions to the I/D field. According to PCPID, “the intended outcome of this Report is to ensure that the Administration is fully aware of and understand the effects of the direct support workforce crisis and the opportunities to address it in ways that strengthen the ability of people with intellectual disability to both participate in and contribute to their communities and the American economy. Not only does the crisis facing this workforce threaten people with intellectual disability and their families; it also undermines the stability, efficiency and ability to grow much needed long-term services and supports and, therefore, undermines the overall U.S. economy”. The Report specifically examines the following areas to determine how the direct support workforce can be sustained so people with intellectual disability are included and engaged in all aspects of society: • Overview of the direct support workforce • Critical challenges faced by the long-term services and supports industry • Effects of the workforce crisis • Economic and other factors that have influenced the crisis • Promising practices to address the direct support workforce crisis. For more information, visit: www.nadsp.org •

EXCEPTIONAL PARENT | EP Magazine • February 2018 5

FIGHT YOUR DIABETES AND GET FIT IN 2018 ow that 2018 is here, you've decided that this is the year you’re finally going to better manage your diabetes, starting with that dreaded word: exercise. According to Sheri R. Colberg, PhD, FACSM, if you suffer from diabetes or are at risk for developing the disease, deciding to commit to fitness could be a real lifesaver. That’s why it’s more important than ever that you make sure this resolution sticks. “Considering that more than 29 million people have diabetes and 84.1 million American adults have prediabetes, it’s crucial that a large number of people make lifestyle changes for the sake of their health," says Dr. Colberg, who partnered with the American Diabetes Association to write the new book Diabetes & Keeping Fit For Dummies. “If you have diabetes or are at risk of developing it, exercising regularly is the single most important thing you can do to keep your blood glucose levels in check, reduce your risk of developing complications, and slow down the aging process” she adds. “And the new year is the perfect time to commit to doing more physical activity.”

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Although having diabetes increases your risk of getting health problems that can greatly reduce your quality of life, Dr. Colberg says you can fight back by keeping fit. Exercise enhances your body’s sensitivity to insulin. Many chronic diseases in addition to type 2 diabetes are associated with reductions in your insulin action, like hypertension and heart disease. Exercise may also enhance your body’s ability to produce more insulin. Plus, it lowers your risk of premature death, heart disease, certain cancers, osteoporosis, and severe arthritic symptoms. “Beyond just the physical benefits, exercise can have a positive impact on your mental and emotional health as well by lessening feelings of stress, anxiety, and depression," she adds. "Being active can also positively affect your self-confidence, body image, and self-esteem.” Knowing all those benefits may not be enough to get you motivated to start exercising more. So many find that the hardest part can be trying to find the motivation to begin. Read on for Dr. Colberg’s tips to get you moving in the new year and beyond.

MOVE IT: MOTIVATIONAL TIPS FOR GETTING STARTED Choose aCtivities you enjoy. It’s human nature to avoid doing the things you really don’t like to do. If you absolutely hate running, it’s probably not the best activity to choose to get started with. Most people need exercise to be fun, or they lose their motivation to do it over time. By actually having fun with your activities, you will more easily make them a permanent and integral part of your routine. Try picking activities you truly enjoy, such as salsa dancing or golfing (as long as you walk and carry your own clubs). “Maybe you haven’t found any activities that you enjoy much. If that’s the case, choose some new ones to take out for a test run (so to speak). Also, be sure to choose an exercise that suits your physical condition and overcomes or works around your limitations.” start off with easier aCtivities. Exercising too hard right out of the gate will likely leave you discouraged or injured – especially if you haven’t exercised in a while. Instead, start slowly with easier activities and progress cautiously toward working out harder. “If you often find yourself saying that you are too tired to exercise, your lack of physical activity is likely what’s making you feel sluggish,” says Dr. Colberg. “But after you begin

doing even light or moderate activities, your energy levels rise along with your fitness, and your physical (and mental) health improves." CheCk your blood gluCose for added motivation. When starting a new exercise, use your blood glucose meter or continuous glucose monitor to check your blood glucose before, during (if you’re active for more than an hour), and after your workout. Why? A reading that changes – especially in the direction that you want it to – can be very rewarding and motivating. You will be able to see evidence of real results. If you don’t check, you may never realize what a positive impact you can have on your diabetes simply by being active. “Let’s say your blood glucose is a little high after you eat a meal, and you want it to go lower without taking (or releasing) any more insulin. You can exercise after your meal and bring your blood glucose down within two hours after eating and taking insulin, or you can avoid or lower post-meal spikes in your blood glucose. You wouldn’t know the extent of the effect you can have without using your blood glucose meter to check.” spiCe up your routine. One of the chief complaints about exercise is that it is boring.

6 February 2018 • EP Magazine | EXCEPTIONAL PARENT

Feelings of boredom with your program can be the result of repeating the same exercises each day. To keep it fresh, try different physical activities for varying durations and at different intensities. Just knowing that you don’t have to do the same workout day after day is motivating by itself. “You may want to do a variety of activities on a weekly basis, an approach known as cross-training,” says Dr. Colberg. “For example, you can walk on Monday, Wednesday, and Friday but swim on Tuesday and take dance classes on Saturday. In addition to staving off boredom, adding variety to your workouts has many other advantages as well, such as using different muscles so more muscles get the benefit of exercise training.” find an exerCise buddy (or several). You don’t have to go it alone when being active. Having a regular exercise buddy keeps you accountable, increases your likelihood of participating, and also makes your activities more social and fun. Get your spouse, family members, friends, and co-workers to join in your physical activities. Having a good social network to support your new or renewed exercise habit helps you adhere to it over the long run.

“Your community may be a good place to look for other exercise options. Take the time to find out what's available in your area. You can often find groups of health-conscious people walking together during lunch breaks, or you may be able to join a low-impact aerobics or other exercise class offered at your workplace, community center, or recreation center. The more you can get involved in making your lifestyle changes a part of a larger community, the more likely you are to be successful in making them a lifelong habit.” set goals. Setting goals can help keep your interest up and be a great motivator. For instance, if you walk for exercise, you may want to get a pedometer and set a goal of adding in 2,000 more steps each day. But when laying out your fitness goals, be realistic and avoid setting unreachable goals that will sabotage you from the start. That said, if you do have large goals, great! Break them down into smaller, realistic stepping stones (such as daily and weekly physical activity goals). This will help keep you on track and keep you from becoming too overwhelmed with trying to accomplish your goal. “Using a fitness tracker, activity log, or fitness app may also be a good idea for helping you reach your exercise goals,” says Dr. Colberg. “Figure out what works best for you.” don't forget to reward yourself. Having goals is great, but with no reward, what motivation do you have for reaching them? When you reach an exercise goal, be sure to reward yourself (but preferably not with food!). “No one ever said that sticker charts and non-food treats are just for kids. Maybe you can promise yourself an outing to somewhere special, the purchase of a coveted item, or another treat that is reasonable and effectively motivates you to exercise. If you do miss one of your goals, try to make the rest of them happen anyway. Then reward yourself when you meet any of your goals, even if you don't make them all happen.” have a plan b ready just in Case. Always have a backup plan that includes other activities you can do in case of inclement weather or other barriers to your planned exercise. For example, if a sudden snowstorm traps you at home on a day you planned to swim laps at the pool, be ready to walk on the treadmill or try out some resistance activities (like

abdominal crunches and leg curls). Even if you don’t enjoy your second-choice exercise as much, you can always distract yourself to make the time pass more pleasantly. Read a book or magazine, watch your favorite TV program, listen to music or a book on tape, or talk with a friend on the phone while you're working out. “Keeping an exercise routine can be a slippery slope – especially when you’re starting out. One roadblock can be all it takes to set you back. By having a backup plan, you are still keeping your body active in some capacity and are less likely to quit altogether.”

daily movement in any way possible is likely to benefit your health. These could include gardening, doing housework, walking the dog, or even just standing while talking on the phone.”

take small steps to get yourself baCk on traCk. Even after you’ve developed a normal activity routine, it can be easy to get off track. If you’re having trouble getting restarted, simply take small steps in that direction. You may find you need to start back at a lower intensity by using lighter weights, less resistance, or a slower walking speed. Don’t overdo it to make up for lost time. Starting out slowly with small steps will help you avoid burnout, muscle soreness, and injury. “If you don't want to exercise on a given day, make a deal with yourself that you'll do it for a short time to get started. After all, getting started is often the hardest part. Even doing only 5 to 10 minutes at a time (rather than 30 minutes or more) is fine. ON YOUR TOES: It takes some planning ahead and a firm After you’re up and movcommitment to make exercise a priority. ing, you may feel good enough to exceed the time you planned on sChedule your workouts. You show up for your doctor’s appointments, so why doing in the first place. The key is to begin should scheduling your physical activity be any through any means possible.” "When it comes to living with diabetes or different? Write your exercise down on your calendar or to-do list just like you would any prediabetes, exercise is very powerful mediother appointment. Scheduling it into your cine, and the side effects are all good ones," daily activities will help keep you from making concludes Dr. Colberg. "This is why it's so excuses. If you already have the time blocked important to get motivated and commit to an exercise routine, because it will change your off, you will be more likely to do the activity. life and put you on the road to wellness. Make 2018 the year that you take charge of your life, take advantage of opportunities for "spa time." How many times have you get fit, and discover better health at last." driven around a parking lot to find a spot close to the door instead of just parking farther ABOUT DR. COLBERG away and walking? When you do that, you’re Sheri R. Colberg, PhD, FACSM, is the author of missing out on an opportunity for sponta- Diabetes & Keeping Fit For Dummies. She is profesneous physical activity (SPA). There are plenty sor emerita of exercise science from Old Dominion University and an internationally recognized diaof ways to incorporate SPA into your daily roubetes motion expert. She is the author of 12 tine. If you have a sedentary desk job, take the books, 25 book chapters, and over 300 articles. stairs rather than the elevator whenever you She was honored with the 2016 American can. Walk to someone else’s office or the Diabetes Association Outstanding Educator in neighbor’s house to deliver a message instead Diabetes Award. Contact her via her websites SheriColberg.com and DiabetesMotion.com of relying on the phone or email. “Keep in mind that you don't have to do Diabetes & Keeping Fit For Dummies (Wiley, activities at a high intensity for them to be February 2018, ISBN: 978-1-119-36324-8, $22.99) is available from all major booksellers, and direct effective,” says Dr. Colberg. “Adding in more from the publisher at www.wiley.com EXCEPTIONAL PARENT | EP Magazine • February 2018 7

NEW PRODUCTS LITTLE HELPER CLEANING SET

COLOR MIXING GLASSES Color Mixing Glasses are a visual sensory product designed for children with vision and learning disabilities ages 4 and up to wear and observe the world. These child-size glasses and interchangeable lenses let kids observe the world while learning about color. Features eight easyto-change lenses: two each of red, yellow, blue and two distortion lenses that let the

user see the world like a bug. Users can combine up to 2 lenses in each side of the frame to teach color mixing, or overlap lenses without the frame for kaleidoscope. TFH SPECIAL NEEDS TOYS 4537 Gibsonia Road Gibsonia, PA 15044 Phone: 800-467-6222 Web: www.specialneedstoys.com Email: [email protected]

The Little Helper Complete Cleaning Set is a set of child-sized cleaning tools designed for children with disabilities ages 3 and up to improve their gross motor skills. It is built to last with solid wood handles and soft bristle brushes. Little Helper Complete Cleaning Set also encourages role-playing fun. Includes broom, mop, duster, brush, dustpan and storage stand. YOUNG EXPLORERS PO Box 3338 Chelmsford, MA 01824 Phone: 800-239-7577 Fax: 800-866-3235 Web: www.youngexplorers.com

HELPING HANDS FINE MOTOR TOOL SET Helping Hands Fine Motor Tool Set is a product designed for users with upper extremity disabilities to build writing and pre-scissor skills. With this product, users can twist, scoop, squeeze, and build little hand muscles. The set includes: Gator Grabber Tweezers (4-inches), Handy Scoopers (6-inches), Twisty Droppers (6-

inches), Squeezy Tweezers (4.75-inches). SPECIAL SUPPLIES 1084 Brook Road Lakewood, NJ 08701 Phone: 781-989-4046 Fax: 781-989-4044 Web: www.specialsupplies.com Email: [email protected]

ABLEDATA The ABLEDATA database of assistive technology and rehabilitation equipment contains information on more than 30,000 products for persons of all ages who have a physical, cognitive, or sensory disability. Products are chosen for these pages by the ABLEDATA staff based on their specific applicability to or design for children who have disabilities. ABLEDATA, operated by New Editions Consulting, Inc., is funded by the National Institute on Disability and Rehabilitation Research (NIDRR) under contract number ED-OSE-13-C-0064. For more information on these and other assistive devices, or to submit product information for the database (and possible inclusion on this page), contact: ABLEDATA, 103 W. Broad Street, Suite 400, Falls Church, VA 22046; phone: 1-800-227-0216; TTY – 703-992-8313; website: www.abledata.com; email: [email protected]; twitter: https://twitter.com/AT_Info; Facebook: https://www.facebook.com/abledata. 8 February 2018 • EP Magazine | EXCEPTIONAL PARENT

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The staff forms two teams, each offering comprehensive expertise in one of the company's two main divisions of facility services. The “Electrical Team” and the “HVAC/Mechanical Team” can cope with any situation an client or homeowner might encounter.

LJS Fac/X, a twenty-two year old company, has undergone its own evolution since the 1990s. Larry Smith began as an individual electrical contractor, founding the company as LJS Electric as his commercial clients grew his business. Larry saw the need to expand his capabilities, and, over the next two decades, he brought talented professionals together to complement each other's unique skill set. Together the staff of LJS Fac/X offers practical, hands-on experience in a broad array of specialties.

Contact: Vice President of Operations [email protected] 201-777-6625 LJS FAC/X, Inc. 430 Commerce Blvd, Unit C Carlstadt, NJ 07072

LJS FAC/X, INC. | 430 COMMERCE BLVD, UNIT C | CARLSTADT, NJ 07072 | 201-777-6610

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COMPASSIONATE

NEW PRODUCTS FOLLOW ME FRIEND Follow Me Friend is a toy designed for babies with fine motor disabilities to develop coordination, fine motor and crawling skills. Follow Me Friends take off when touched, playing a friendly tune and

barking to remind baby to come play. Accordion-shaped to move in a straight line or a circular motion, with 2 speed settings and colorful buttons for music and sounds. YOUNG EXPLORERS PO Box 3338 Chelmsford, MA 01824 Phone: 800-239-7577 Fax: 800-866-3235 Web: www.youngexplorers.com

SWITCH ADAPTED BUBBLE TRAIN The Switch Adapted Bump-N-Go Bubble Train is designed for use by children with upper extremity, severe physical, or fine motor disabilities. Activate a switch and watch the train travel around the room while it blows bubbles. The train makes realistic train sounds and plays music. Bump-n-go technology enables the train to change direction when it runs into a wall or obstacle. ABLENET 2808 Fairview Avenue North Roseville, MN 55113 Phone: 651-294-2200 Web: www.ablenetinc.com Email: [email protected]

ERGOCAP ULTRALITE UNIVERSAL CANE AND CRUTCH TIP The ErgoCap Ultralite Universal Cane and Crutch Tip are designed for use by individuals with balance, lower extremity, or walking disabilities. The cane tip is intended to allow security, comfort, and stability to be achieved and reduces the vibration and impact with the ground. This product is made of non-slip, long-lasting rubber with special stabilization wings to provide steadiness at any angle, allowing the user to walk more naturally and comfortably. The device is a lightweight tip is a perfect fit for 73 millimeters tubes or any standard tube. It is also usable with both canes and crutches (even pediatric crutches).

ALPHABET NESTING AND STACKING BLOCKS The Alphabet Nesting and Stacking Blocks are designed for users with cognitive disabilities to learn their ABC’s. For example, “A” is for an alligator eating an apple. Brightly colored animals and familiar objects illustrate the letters of the alphabet on these sturdy cardboard blocks that stack by letter, color, and size. Nested, the 10 vibrant blocks fit into the included carrying case. Stacked, they form a tower nearly three feet high. MAXI-AIDS 42 Executive Boulevard Farmingdale, NY 11735 Phone: 800-522-6294 Fax: 631-752-0689 Web: www.maxiaids.com Email: [email protected]

10 February 2018 • EP Magazine | EXCEPTIONAL PARENT

MELISSA & DOUG PO Box 590 Westport, CT 06881 Phone: 800-718-5365 Web: www.melissaanddoug.com Email: [email protected]

Know more, worry less with the newest tools to help seniors living at home. Help your aging loved one live at home longer, safer and more comfortably.

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As a veteran-owned company, we serve all seniors, but we hire vets, donate to veterans causes and offer special pricing to vets and their families. Veteran owned and operated.

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(800) 300-1724 | www.bluestarhonorcare.com

AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE & DENTISTRY

Telehealth and Children with Disabilities BY H. BARRY WALDMAN DDS, MPH, PHD, LISA BARD LEVINE, MD, MBA, ANDREW G. SCHWARTZ, DDS, FACD, RICK RADER, MD, FAAIDD, DHL (HON) AND STEVEN P. PERLMAN DDS, MSCD, DHL (HON)

“Persons with severe functional disabilities are the highest users of health care services. Care for the needs of this population represents a significant percentage of our national health care costs. A growing body of research has demonstrated the efficiency of self-management strategies and caregiver engagement for effective long term care for individuals with chronic medical conditions.” 1

ne of the main challenges for parents with children who have chronic health problems is to effectively juggle their role to provide needed care with the requirements of everyday living. The task of caring for a child with complex disabilities at home may well be stressful and overwhelming for parents and caregivers. The provision of such care may prove to be detrimental to both the physical health and the psychological well-being of parents of children with chronic disabilities. 2 Definition: “Telehealth is the provision of health care remotely by a means of a variety of telecommunication tools, including telephones, smartphone, and mobile wireless devices with or without video connection.” 3

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WHY USE TELEHEALTH Telehealth increases access to: 1) health care by providing convenience and eventually reducing costs, 2) episodic and chronic conditions, and 3) an avenue to serve the individual patient and caregivers at home with the use of mobile devices. Some specifics: • Increased access to therapy for individuals with physical, medical and/or mobility disabilities. • Increased access to disability specialists regardless of geographic area. • Access to care in a native language (e.g. American Sign Language). • More time to collect information about thoughts, feelings and behaviors outside of office appointments. • Flexible scheduling. 3, 4

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 February 2018 • EP Magazine | EXCEPTIONAL PARENT

DOCTORING AT A DISTANCE: Telehealth could play a critical role in reducing costs and interference with families’ schedules through rapid contact with a covering practitioner, be it a physician, nurse practitioner or other health professional. In many cases, difficulties can be resolved by means of a variety of telecommunication tools, including telephones, smartphone, and mobile wireless devices without the need for an office visit.

IN THE PAST The era of the visit to a patient’s home by a physician with a black bag that contained the obligatory instruments for diagnosis and treatment is long gone. The reality is that the technology of modern health care just doesn’t fit into those little black bags. More than a half century ago, one of us (HBW) directed a program in the metropolitan Cleveland Ohio area to provide needed dental services (using portable equipment by local dentists and dental students from Western Reserve University) for patients who were homebound or in nursing homes. 5

THE PRESENT In January 2018, the word “telehealth” was entered into the U.S. Library of Medicine of the National Institutes of Medicine search engine. Between 1975 and 1991 no more than five telehealth

reports were listed on an annual basis. In the next few years there has been an amazing increase of interest in this field. By the year 2000, 828 articles were listed; 2,071 articles in 2010 and 2,417 articles in 2015. 6

IMAGINE THE FOLLOWING Example 1. It’s morning. You’re getting the kids ready for school. Mom and dad also are preparing for their work day. One of kids is doing the “ordinary” things. A problem arises with your other child (who has special health care needs); just doesn’t feel well. Is it serious or just the “usual”? Your first thoughts may be: “Should we get an appointment with the covering doctor?” “Who’s going to bring the child for the medical consultation?” “What about the office work appointment downtown?” These and so many other conflicting thoughts arise in the ordinary set of cir-

cumstances. Example 2. Your child with special health care needs requires constant monitoring regarding respiratory difficulties and feeding issues. How does a parent carry out these duties while maintaining the “routine” family activities? In these examples and so many other circumstances, telehealth could play a critical role in your family’s daily activities. In the first scenario, a rapid contact would be made with a covering practitioner (be it a physician, nurse practitioner or other health professionals) by means of a variety of telecommunication tools, including telephones, smartphone, and mobile wireless devices. In many of these cases, the difficulties can be resolved without the need for an office visit – thereby reducing costs and interference with the family’s scheduled events. In the second example, continuing electronic

EXCEPTIONAL PARENT | EP Magazine • February 2018 13

monitoring would automatically raise an alarm bringing contact between the monitors and the caregiver; much like the home burglar systems increasingly covering private homes. In addition, in the second example, enter The MAVEN Project (Medical Alumni Volunteer Expert Network). The MAVEN Project is a mission-driven health care nonprofit organization that provides timely access to medical expertise by linking their corps of physician volunteer experts to organizations working with underserved populations, via telehealth. In this case, your child’s primary care provider could connect with a MAVEN Project specialist via HIPAA-secure telehealth technology to receive advice about your child’s (deidentified) case. Instead of waiting months to see a specialist and traveling to yet another appointment, with the MAVEN Project physician volunteer’s guidance, your child’s care could be managed locally in the primary care setting or could be effectively pre-triaged by a specialist, confirming that you do need to make the trip to see the specialist in person.

OTHER SITUATIONS FOR TELEHEALTH INTERVENTION 1. There often is poor attention to recommended preventive asthma medications which could lead to serious consequences. A program can be developed for school-based telehealth asthma management to overcome barriers to preventive asthma care. 7 2. Home environment assessments and subsequent modifications by healthcare professionals can enhance home safety. However, travel time, expense and the availability of qualified professionals can limit the broad application of this intervention. Telehealth has the potential to increase access to home safety evaluations. 8 3. In order to improve services in underserved communities, dental hygienists can identify dental decay in children 4-7 years using telehealth photography; thereby establishing the extent of needed services. 9

4. Telepsychiatry consultations for pediatric psychiatric emergencies are costefficient from a hospital system perspec-

tive compared with in-person consultation at a children's hospital main campus. Telepsychiatry also improves clinical and operational efficiency and patient and family experience. 10

“When it comes to medicine, it seems the future is always now. When it comes to telemedicine, it seems that the future looks even brighter.” 12 • ABOUT THE AUTHORS:

FUTURE PROMISE Estimates suggest that in 2015, 15 million U.S. residents received telemedical care in the prior year; with expectations that this number will increase significantly over the next few years. Changing reimbursement models will help drive this increase. “Social factors should also influence the growth as people get more comfortable with the technology on both the provider side and the patient side of the transaction.” (Emphasis added) 11

LEGAL ISSUES There are several legal obstacles to the practice of telemedicine, the main one being licensure. “Healthcare providers, including physicians, are licensed by states. Usually, their practice is governed both by the state in which they physically practice (the “home state”) and the state in which the patient is located (the “remote state”). If a California specialist in dealing with issues faced by a child with particular special health care needs in New York, the physician must be licensed both in California and in New York. Otherwise, New York can find the California-licensed physician guilty of practicing medicine in New York without a New York license. Some states have attempted to solve this problem by creating a limited telemedicine license for which out-of state physicians can apply. However, this solution doesn't exist in all states.” 12

FROM THE PATIENT’S PERSPECTIVE “… (a) key legal issue is regulating the standard of care. Some states, such as California, adhere to a policy where the standard of care in telemedicine services must be the same as if providing the service in person. In other words, patients seen via the Internet cannot be treated any differently, or with less diligence, than if seen in person. The idea is to ensure clinicians don’t waive their duty of care merely because the patient isn't present in person.” (Emphasis added) 12

14 February 2018 • EP Magazine | EXCEPTIONAL PARENT

H. Barry Waldman, DDS, MPH, PhD is SUNY Distinguished Teaching Professor Department of General Dentistry, School of Dental Medicine, Stony Brook University, NY Lisa Bard Levine, MD, MBA, Chief Executive Officer, The MAVEN Project (Medical Alumni Volunteer Expert Network), Boston, MA Andrew G. Schwartz, DDS, FACD, Clinical Assistant Professor, Director, Division of Behavioral Sciences and Practice Management Department of General Dentistry School of Dental Medicine, Stony Brook University, NY Rick Rader, MD, FAAIDD, DHL (Hon), Director Morton J. Kent Habilitation Center, Orange Grove Center, Chattanooga Steven P. Perlman, DDS, MScD, DHL (Hon), Global Clinical Director, Special Olympics, Special Smiles; Clinical Professor of Pediatric Dentistry, The Boston University Goldman School of Dental Medicine

References 1. Forducey PG, Glueckauf RL, Bergguist T, et al. Telehealth for persons with severe functional disabilities and their caretakers: facilitating self-care management in the home setting. Psychology Services, 2012; 9(2):144-162. 2. Raina P, O'Donnell M, Rosenbaum P, et al. The health and well-being of caregivers of children with cerebral palsy. Pediatrics. 2005; 115(6):e626-636. 3. Dorsey ER, Topel EJ. State of telehealth. New England Journal of Medicine, 2016; 375:154-161. 4. American Psychologic Association. What are telehealth and telepsychology? Telepsychology and persons with disabilities. Available from:http://www.apa.org/pi/disability/resources/publications/telepsychology.aspx Accessed January 11, 2018. 5. Waldman, HB. Report of a demonstration dental care program for homebound chronically ill and aged patients. Journal American Dental Association, 1964; 69(12):722-729. 6. U.S. Library of Medicine of the National Institutes of Medicine. Available from: https://www.ncbi.nlm.nih.gov/pubmed/?term=telehealth Accessed January 11, 2018. 7. Halterman JS, Fagnano M, Tajon RS, et al. Effect of the school-based telemedicine enhanced asthma management (SBTEAM) program on asthma morbidity: A randomized clinical trial. Journal American Medical Association Pediatrics 2018 Jan 8:e174938. doi: 10.1001/jamapediatrics.2017.4938. [Epub ahead of print] 8. Romero S, Lee MJ, Simic I, et al. Development and validation of a remote home safety protocol. Disability Rehabilitation Assistive Technology, 2018; 13(2):166-172. 9. Daniel SJ, Kumar S. Comparison of dental hygienists and dentists: clinical and teledentistry identification of dental caries in children. Internal Journal of Dental Hygiene, 2017;15(4):e143-e148. 10. Thomas JF, Novins DK, Hosokawa PW. The use of Telepsychiatry to provide cost-efficient care during pediatric mental health emergencies. Psychiatric Services. 2017 Oct 16: doi: 10.1176/appi.ps.201700140. [Epub ahead of print] 11. Donohue J. Telemedicine: What the future holds. HealthCare - IT News Available from: http://www.healthcareitnews.com/blog/ telemedicine-what-future-holds Accessed January 12, 2018. 12. Cohen MH. Telemedicine: The Future of Health Care. Available from: https://www.legalzoom.com/articles/telemedicinethe-future-of-health-care Accessed January 12, 2018

Irene & Eric Simon Brain Research Foundation

Inspired by groundbreaking discoveries, the IES Brain Research Foundation seeks to help further research and education to help find answeres to brain diseases. BRAIN RESEARCH: A BRIGHT IDEA

The Irene & Eric Simon Brain Research Foundation, a totally volunteer-run 501(c)(3) nonprofit organization, has given 81 Student Summer Fellowships to bright, motivated undergraduate and 1st year graduate and medical students. The IES Brain Research Foundation hopes to attract brilliant young minds to add to the work of the senior neuroscientists, leading to effective treatments and cures for brain diseases and conditions such as: • AUTISM • PTSD • BRAIN CANCER • MULTIPLE SCLEROSIS • PARKINSON'S DISEASE • ALZHEIMER'S DISEASE • TRAUMATIC BRAIN INJURY • DEPRESSION • ALS & OTHERS

www.iesBrainResearch.org (973) 726-6218 • [email protected] IES Brain Research Foundation thanks everyone who has participated & donated and wishes everyone Happy Holidays.

KRISTIN MCNEALUS, PT, DPT

THE FITNESS PRIORITY

Let’s Talk About STRESS Don’t wait! Get moving – even if only for 10 minutes! It will help manage your stress, and decrease depression and anxiety.

It seems like we are getting

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busier by the year, and less equipped to handle the load. Everything is moving faster, we have devices that imply we are available at any time, and this has resulted in a blurring of the distinct lines where work ends and life begins. Ultimately, this means we are feeling more work stress at home, and more home stress at work. Over 70% of American adults say that they experience stress or anxiety daily, and that it impacts their life moderately! Over 70%! Everyone reacts differently to stress. Let’s start with what stress is. By definition, stress is a reaction to a stimulus that disrupts our equilibrium – either physically or mentally. Stress happens in three stages. The first is an initial state of alarm (fight or flight response), which produces an increase of adrenaline. This is not

always a bad thing, right? If you need to get yourself out of a dangerous situation, this surge of adrenaline and focus can literally save your life! The body can withstand occasional extreme stress and still survive. The second stage is a shortterm resistance mechanism that the body sets up to cope with the problem. The final stage is a state of exhaustion. The exhaustion stage occurs when the body has used up all its available resources. If the situation is not taken care of, stress can produce long-term damage to the body, including heart problems, high blood pressure, the immune system problems, skin problems, pain, diabetes, and infertility. Let’s talk about how this chronic stress affects our bodies. First, think about your

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16 February 2018 • EP Magazine | EXCEPTIONAL PARENT

muscles, and how they get tense. This is part of that fight or flight reaction – your body is getting ready to guard itself to prevent injury! I know I hold tension in my shoulders and neck. How about you? Those muscles get tight and painful. Are you spending a lot of your day sitting? This can further contribute to the shortening of muscles and cause more tension and pain. Additionally, you may notice headaches, jaw clenching, or teeth grinding. Often the muscles in our chest tighten up. You may not realize it, but the tight muscles prevent the ribs from expanding fully, so you’re not taking in as much oxygen into your lungs. We need this oxygen to circulate around to keep all of our nerves, and organs and muscles healthy. Most important, we need the oxygen to keep our brains alert! Our brains use 20% of all the

oxygen coming in to maintain our memo- This is the body looking for food that will ries and keep the processing speed fast. give quick energy. And I’m sure your work Over time you may notice that you’re not as place generously has these options laying sharp, or you start to have feelings of anxi- around, and difficult to resist, right? But since we aren’t burning off these calories in ety or depression. Let’s look at even more ways that stress an intense fight, we are storing them as can negatively impact your entire body’s excess fat! There have been numerous studnormal functions. Stress can cause a con- ies published that correlates work stress sistent and ongoing increased heart rate, with weight gain. and the elevated levels of stress hormones and of blood pressure, can take a toll on the body. This can increase the risk for hypertension, heart attack or stroke. Chronic stress may also contribute to inflammation in the circulatory system, particularly in the coronary arteries, and this is one pathway that is thought to tie to heart attack. Stress can affect cholesterol levels. The stress hormones traveling around the bloodstream can also cause the liver to produce excess glucose. In a true fight or flight situation, your body needs this glucose for the quick energy. But in this situation of chronic stress, we aren’t burning off that excess glucose in a fight. This glucose in our blood is increasing the risk for Type 2 diabetes. Stress can affect our digestive system in various ways. On one extreme, your nervous stomach may cause nausea and vomiting, limiting your HELPFUL HORMONES: Exercise releases endorphins, which help to limit perceptions of stress and give appetite. You may develop stomach you a clearer view of what needs to be prioritized. pain, or even ulcers. This is because Many of us also use things like caffeine to when we need to fight, our bodies divert resources away from the systems that aren’t help get us going, which increases the important. When you are fighting, you adrenaline mixing with our cortisol. And we don’t need to feel hungry or digest. This may have some alcohol to help bring us slow digestion may also cause you to be down and help us sleep. You can see how this helps to contribute to the cycle. constipated, and bloated. Stress is exhausting… with the body and On the opposite end, you may notice that you eat more to deal. You may eat different mind under this ready-to-go fight or flight foods than you’re used to. And with a nar- reaction for a prolonged period of time, it rowed esophagus (a result from that readi- understandably gets fatigued! But it also ness to fight!) many people experience impacts your ability to get a good night of sleep. So, there’s this cycle of fatigue conheart burn. This could also cause diarrhea. Worry causes some people to skip or for- tributing to greater perceptions of stress get to eat meals. For more people, that cor- and that stress, in turn, contributing to tisol hormone that is produced when you’re fatigue. When we’re tired, we also have greater stressed and coursing through your body gives you the craving for foods that are perceptions of our pain. We tend to eat higher in carbohydrates, sugars and fats. more food, and choose food that is less

nutritious. We lose our desire to have sex, and maybe even socialize. Prolonged stress leads to a depletion of the body’s defenses. Your immune system may not be as strong, and you may find yourself getting colds or flu more frequently. It may take longer to get better when you are sick. And if this continues, those repeated illnesses can lead to a compromised immune system and open you up to more significant diseases. Now that we know more about how stress affects us, what can we do to better cope or manage the anxiety in our lives? Notice that the goal is not to decrease the stress in our lives! Because that’s not likely going to happen, right? We have limited control over what is happening, so we have to focus on how we deal with it. he great news is that there are some simple things you can do once you are aware that stress is affecting your body and maybe even your health. The great news is that there are some simple things you can do! Regular exercise is the #1 way to manage stress! It is healthy, it is inexpensive, and there are a multitude of physical benefits! Studies have shown that as little as five minutes has anti-anxiety benefits. The body was made to move, so sitting in an office, at a computer or in a wheelchair for prolonged periods of time is not natural for us. Let’s talk about how exercise helps the same systems that were being impacted by stress. By using the muscles to do a task, the tension held in those static muscles will relax. This will allow for more blood flow and more oxygen. Also, by exercising, you will be counteracting the muscle imbalances that develop from sitting too much, which often lead to pain. Here is a very common example: because we spend so much time sitting, our hip flexors, the muscles on the front of the thighs, get short and tight. They attach to the lower spine, which is the area of least resistance when we move. These tight muscles pull on the lumbar spine and can cause back pain. Exercise will help to stretch out those tight muscles, as well as strengthen the core muscles that support the spine. Exercise help those rib cages expand and

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get more air into our lungs! It also helps get blood flowing faster through our vessels and, in turn, lowers our cholesterol and our blood pressure. Our hearts pump oxygenrich blood to all of our limbs, our organs, our brains, everywhere! It brings all those nutrients to keep everything healthy! When we’re at rest, our hearts are pumping about one gallon of blood per minute… when we exercise, that goes up to about four gallons per minute! You can see how much more vital oxygen is getting to our nerves and our muscles! And, most important, our brains! All that increased blood flow helps keep our memories sharp, and our processing speed quick. Did you know that the brain uses 20% of all the oxygen coming into our bodies?? Exercise releases endorphins, which are

Day 3: Squat it out. Do 1 minute of squats.

Day 2: Sport red today for National Wear Red Day®. Day 8: Calculate your body mass index (BMI).

Day 9: Go for the gold! Walk an extra 15 minutes today.

Day 15: Swap the sweets for a piece of fruit for dessert.

Day 23: March in place during commercial breaks to get your heart going.

Day 16: Stress less. Practice mindful meditation for 10 minutes.

Day 12: Share your favorite inspirational quote with The Heart Truth®.

Day 11: Plan your menu for the week with heart healthy recipes. Day 19: Give Meatless Monday a try.

Day 17: Turn up the music and dance to your favorite song.

Day 24: Take out a tape measure and find out the size of your waist.

Day 18: Add a stretch break to your calendar to increase your flexibility.

Day 25: Do three jumping jacks for every U.S. gold medal!

#MoveWithHeart nhlbi.nih.gov 18 February 2018 • EP Magazine | EXCEPTIONAL PARENT

Kristin McNealus, PT, DPT, ATP received her Masters in Physical Therapy from Boston University then went on to earn her Doctorate in Physical Therapy from MGH Institute of Health Professions. She has been a staff physical therapist on inpatient rehabilitation for people with spinal cord injuries at a number of hospitals in Southern California, as well as Director of a community adaptive gym for people with neurological injuries. She is a member of the International Network Spinal Cord Injury Physiotherapists, and has contributed to the APTA Guidelines for Exercising with a SCI. She has completed 3 marathons, and 25 triathlons, including the Ironman! SCI Total Fitness is designed to promote health and wellness for people with physical disabilities.

Day 5: Visit Smokefree.gov to take the first step in quitting smoking.

Day 4: Make a heart healthy snack for the Big Game.

Day 10: Aim for 30 minutes of physical activity today.

THE FITNESS PRIORITY

Try one of these tips each day for a month, then keep up the momentum and make your favorites part of your regular routine.

28 Days Towards a Healthy Heart Day 1: Take the Heart Month pledge to move more

your stress, and decrease depression and anxiety. •

chemicals that naturally improve our mood. These will help to limit perceptions of stress, as well as give you a clearer view of what needs to be prioritized. It will also ward off feelings of anxiety and/or depression. Another benefit is that exercise helps improve our sleep – both our ability to fall asleep as well as get a deeper sleep, so we feel more rested when we wake up. As mentioned before, when we’re rested, we have lower perceptions of our pain, and of our stress! What is the BEST exercise to help with stress management? Whatever you enjoy! An exercise regimen only works if you do it, and if you don’t enjoy it, you won’t stick with it. Try different activities and see what you enjoy. Don’t wait! Get moving – even if only for 10 minutes! It will help manage

Day 26: Fill half of your lunch and dinner plates with vegetables.

Day 7: Schedule your annual physical.

Day 6: Make today a salt-free day. Use herbs for flavor instead of salt.

Day 13: Give the elevator a day off and take the stairs.

Day 20: Share a funny video or joke that makes you laugh.

Day 14: Protect your sweetheart’s heart: Plan a heart healthy date.

Day 21: Head to bed with enough time to get a full 8 hours of sleep.

Day 27: See how many push-ups you can do in 1 minute.

Day 22: Call a relative and ask about your family health history.

Day 28: Pay it forward and tell a friend about The Heart Truth®.

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

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

UPCOMING EVENTS DC Metro Dec 1-3, 2017 Toronto Jan 19-21, 2018 Los Angeles Feb 23-25, 2018 NY Metro May 4-6, 2018 Chicago Jun 29-Jul 1, 2018 Houston Aug 3-5, 2018 Boston Sep 21-23, 2018 San Mateo Oct 26-28, 2018

The event for the disability community

www.abilities.com/expos Register online today to bridge the gap between ability and disability. Come for the products, stay for the fun!

GENETIC ALLIANCE

diet and nutrition TH E

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FROM BABIES TO TEENS BY JORDAN CAPIZOLA AND LILLIAN DUFFIELD he new year inspires many people to set goals for themselves, especially when it comes to diet and nutrition. People, especially parents, see it as an opportunity to reset their behaviors and develop healthier habits. Parents spend a great deal of time researching ideas and recipes for how to keep their families healthy, but sometimes researching information online can be daunting. It seems like every day there is new information regarding what is healthy and what is not, thus making it much harder for parents to distinguish fact from fiction. This article will help clarify some of this confusion by

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discussing several of the most important things for parents to know about diet and nutrition for babies, children, and teenagers. Parents of newborns know they should exclusively breastfeed for the first six months (unless told otherwise by the baby’s healthcare provider) and introduce solid foods only after that, but what kinds of foods can parents introduce first? Healthcare professionals say the first solid foods babies can eat are soft ones, such as baby cereal (which is often fortified with iron to help support brain development) and pureed fruits, vegetables, and meat. These foods, along with continual breast or bottle feeding, will ensure babies are getting all the important vitamins and nutri-

ents they need. However, experts are now recommending parents add more foods to this list of acceptable first solid foods. Last year, the American Academy of Pediatrics introduced new peanut guidelines that called for the early introduction of peanuts into a baby’s diet.1 Healthcare professionals now recommend feeding babies peanut-containing food (not whole peanuts, as those are a choking hazard) as some of their first foods.2 Doctors hope that this early exposure will help prevent peanut allergies from developing. Another new dietary recommendation comes from the Food and Drug Administration (FDA), which calls for families, especially pregnant and breastfeeding mothers, to eat two to three servings of fish

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. 20 February 2018 • EP Magazine | EXCEPTIONAL PARENT

As children grow and gain their own independence and preferences, try giving them more responsibilities when it comes to food. Have them help pick out healthy snacks in the grocery store and help prepare meals.

a week.3 Fish is a naturally high source of omega-3 fatty acids, which promote brain and eye development in children. It is also rich in protein and vitamins A, B, and D, making it an excellent first food. Parents can also use snack time as a way to focus on motor control. Instead of serving snacks in a bowl or plate, try putting food into little cups to encourage babies to pick them up with their fingers. As babies get older, parents can introduce utensils. To practice scooping skills, parents can give their baby a large spoon and have them scoop small toys from one bowl to another. Children can even practice their cutting skills with Velcro food toys. For children with motor restrictions, try looking into adaptive eatery, such as spill-proof bowls, slip-proof mats, and other ergonomically friendly kitchenware. All these tools can be used to make eating easier while also developing motor control skills.

As babies grow into school-aged children, they can eat almost anything adults can eat. A common misconception is that children are inherently picky eaters who will shun anything healthy, which encourages parents to turn to kid’s menus. However, foods targeted at children are often loaded with sugar and fat; in other words: the food tastes delicious, but is not very healthy. A simple way to improve a child’s diet is to switch out foods for healthier versions. For example, use brown rice instead of white rice or whole wheat bread instead of white bread. These small changes are easy to make and virtually unnoticeable to children. evertheless, no matter how hard some parents try, their child may still become a picky eater or go through phases of disliking certain tastes or textures. Thankfully, there are some inge-

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HEDGE YOUR VEG: A common misconception is that children will shun anything healthy, which encourages parents to turn to kid’s menus. For vegetable protesters, try adding light dressings and sauces like teriyaki sauce or pasta sauce. nious solutions for encouraging healthy eating habits amongst even the pickiest of children. For the child that does not enjoy eating meat, try serving them protein rich alternatives such as yogurt, cheese, eggs, or beans. For a healthy snack, parents can offer crackers with hummus or peanut butter. If it is the appearance of meat that bothers children, try “hiding” the meat in pastas, such as raviolis. For vegetable protesters, try adding light dressings and sauces like teriyaki sauce or pasta sauce. The sweet and salty taste of sauces and dressings can entice picky eaters and help open them up to trying new vegetables. Just be careful not

EXCEPTIONAL PARENT | EP Magazine • February 2018 21

to use too much of these toppings, because they are often more sugary than necessary. Try to use them solely as a stepping stone to getting a child to eat vegetables. Another way to incorporate vegetables is to bake them into meals children already love, like muffins stuffed with vegetables or spaghetti made out of zucchini. If none of these tricks work, try talking to the child’s healthcare professional for advice on how to make sure they are getting all their needed vitamins and nutrients. For school-aged children with dietary restrictions, make sure they understand the ins and outs of their nutritional needs as early as possible. Since children in school are more independent, it is

Another thing for parents of teenagers to watch out for is unusual eating habits.5 It is important that parents start taking note of their child’s habits, behavior towards food, and general influences. Parents can promote a positive body image and good self-esteem by discussing media messages and assuring them that a healthy body comes in all shapes and sizes. Help teenagers find a healthy outlet for stress or negative emotions that does not revolve around food. Also, it’s wise to avoid using food as a reward or punishment, as this can enable these emotional eating habits. However, perhaps what is most helpful is simply listening to one’s child. By providing an open environment to share, they will be more likely to discuss their thoughts and ask questions or directly communicate their insecurities and worries. well-rounded diet is one of the cornerstones of health. By introducing children to healthy and nutritious foods as early as possible, parents can build the foundation for children to enjoy these foods and sustain these habits as they age. There will always be speedbumps along the way, but it is never too late to try new foods and develop healthy habits. As children grow and gain their own independence and preferences, try giving them more responsibilities when it comes to food. Have them help pick out healthy snacks in the grocery store and help prepare meals. They will be able to carry these skills over with them into their teenage years and adulthood, which will make it easier for them to maintain these habits for life.•

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THE ROAD AHEAD: Teenagers will begin eating more than ever before in order to keep up with their changing bodies and active lifestyles, so it is important that parents support their children by promoting healthy eating. important that they always have their medications near them, whether that be with the school nurse, teacher, another parent, or themselves. For children who are unable to communicate their dietary restrictions, parents can make lists with pictures of what their child can and cannot eat. Parents can also write out emergency plans that give others step-by-step instructions of what to do in case their child eats something they are not supposed to. By educating one’s child early on, parents can help their child take control of their diet and learn how to manage it without constant parental guidance. As children grow into teenagers and become increasingly responsible for their own health and diets, their eating habits become relatively well-formed, thus further emphasizing the need for creating health eating habits early on. Teenagers will begin eating more than ever before in order to keep up with their changing bodies and active lifestyles, so it is important that parents support their children by promoting healthy eating. It is a good idea for parents to talk with teenagers and encourage them to eat three healthy meals a day, especially breakfast, which many often skip. Teenagers, particularly females, need to make sure they are consuming adequate amounts of iron (for menstruation) and calcium (for bone growth).4 These nutrients can be easily found in fish, beans, nuts, leafy greens, and dairy products. 22 February 2018 • EP Magazine | EXCEPTIONAL PARENT

ABOUT THE AUTHORS: Jordan Capizola is a Program Coordinator at Genetic Alliance, where she works on the Expecting Health team. In her role, she develops stakeholder engagement tools, drafts research materials, manages website content, and researches new findings in maternal and child health. Jordan graduated from the George Washington University with a B.A. in International Affairs with concentrations in International Politics and Global Public Health and a minor in Public Health. Lillian Duffield is an Administrative Assistant at Genetic Alliance, where she provides administrative support to key team leaders. She has a background in media, event coordination, web design and photography. Lily graduated from Goucher College with a B.A. in Communications with a concentration in Journalism and a minor in Political Science.

References 1. Sicherer, Scott H. "New guidelines detail use of 'infant-safe' peanut to prevent allergy." AAP Gateway. January 5, 2017. Accessed January 16, 2018. http://www.aappublications.org/news/2017/01/05/PeanutAllergy010517. 2. Hersher, Rebecca. "New Guidelines Tell Parents When To Introduce Babies To Peanut Products." NPR. January 05, 2017. Accessed January 16, 2018. https://www.npr.org/sections/thetwoway/2017/01/05/508348588/new-guidelines-tell-parents-when-to-introduce-babies-to-peanut-products. 3. U.S. Food and Drug Administration. "Eating Fish: What Pregnant Women and Parents Should Know." U.S. Food and Drug Administration. November 29, 2017. Accessed January 16, 2018. https://www.fda.gov/Food/ResourcesForYou/Consumers/ucm393070.htm. 4. Kelly, Aaron. "Take Charge of Your Health: A Guide for Teenagers." National Institute of Diabetes and Digestive and Kidney Diseases. December 01, 2016. Accessed January 16, 2018. https://www.niddk.nih.gov/health-information/weight-management/take-charge-health-guide-teenagers. 5. “Tween and teen health.” Mayo Clinic. June 02, 2015. Accessed January 16, 2018. https://www.mayoclinic.org/healthy-lifestyle/tween-and-teen-health/in-depth/teen-eating-disorders/art20044635?pg=2.

diet and nutrition TH E

BY ADEOLA SONAIKE, PHD, MPH, CHES

24 February 2018 • EP Magazine | EXCEPTIONAL PARENT

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”thefoodyoueatcaneitherbe thesafestandmost powerfulformofmedicine ortheslowestformofpoison.” ~

annWigmore

The Family Resource Network launched The Center on Nutrition and Disability, which aims to further assist families and professionals with fostering a healthy relationship with food for people with special health care needs, chronic conditions, and their caregivers.

One of the biggest issues people face today when determining a healthier dietary routine is maintaining it. Many of us have pantries filled with remnants of failed diets and super cleanses; some of us are recent offenders in the plight to maintain our New Year’s Resolution. Two of the most popular New Year’s Resolutions are: “Being more physically active” and “Eating right.” While the former is easier to define and measure, the latter tends to be slightly challenging and is not exactly considered to be a Smart Goal. When a family tells me BETTER BALANCE : Get Fit participant Lauren Sweeney practices tai chi as part of her fitness routine. The Get Fit program administrators discovered that nutritional education was a vital component for successful outcomes. PHOTOS PROVIDED BY ADEOLA SONAIKE

that they want their loved one to “eat right,” I can’t help but wonder, what exactly does this mean? What does it truly mean to eat right? Who came up with this definition, and does it take into account our cultural differences, and how exactly do I measure it? A simple Google search of “eating right” will lead you on a wild goose chase: a myriad of topics appear, ranging from maintaining a healthier lifestyle to selecting the latest fad diet for a monthly fee of $12.99. Of course, we all know the importance of a well-balanced diet, one that covers all of the food groups; but then why is it so much harder for some of us to simply do the right thing and make the healthy choice? Maybe it’s time to go back to the basics. EXCEPTIONAL PARENT | EP Magazine • February 2018 25

ur relationship with food is one of the most misunderstood and overly-complicated relationships. It doesn’t really help that the abbreviation for the Standard American Diet is quite literally SAD. The majority of Americans, irrespective of their weight, have a relatively unhealthy relationship with food; most of us eat too much, some of us do not eat enough and then the large majority of us simply do not eat enough of the good stuff. The food industry and diet blogs have surely taken advantage of this, resulting in a multi-billion-dollar empire selling hopes, dreams and smaller waists. Experts report that many of our favorite meals are overly processed, yet to many of us, these enjoyable and typically unhealthy meals can be considered to be our Achilles heel - I simply cannot say no to a generous serving of truffle fries! Invite a nutritionist into your home, and the first thing they’ll do is comb through your food pantry throwing away any unhealthy or over-processed items. While this is a positive, yet dramatic step in the right direction, what does this do for your relationship with food in the long run? How do we heal the disconnection? At the Family Resource Network, we developed two key health initiatives for people with special health care needs – Get FIT and The Center on Nutrition and Disability. When Get FIT launched in 2008, we spent a significant amount of time measuring health outcomes among program participants. While their physical activity levels improved, we did not observe any positive change in their risk of obesity or diabetes. Within three months, we realized that we had ignored a key aspect to maintaining a healthy lifestyle. Their diet. It became apparent that at the conclusion of each Get FIT session, participants would go directly to the vending machine and purchase their preferred, and often unhealthy, snack. As soon as we added a nutrition education component to the program, we began to see results. Not only did we see a decrease in the risk factors that contribute to obesity and diabetes, but we saw an increased level of independence with relation to meal preparation among our participants. So, what changed? Did Get FIT participants suddenly start to ignore their need for sugar at the conclusion of a workout? Not exactly. We simply transformed the narrative. It is extremely important to replenish

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STEPPING IT UP: Lauren learned the importance of replenishing her body with healthier post-workout snack options and staying hydrated throughout the day. your body appropriately after exercise - carbohydrates which are a form of sugar are stored in your body as glycogen. When your body is in need of that extra boost of energy during a workout, it draws upon these glycogen stores to keep you going. This is why you will often find yourself craving carbohydrates or sugar after a workout. By eating carbohydrate-rich foods, you are able to replenish your body so that your glycogen levels may be restored back to normal. Through the use of picture boards and other universal design for learning tools, we taught Get FIT participants the importance of replenishing their body after a workout, and shared healthier post-workout snack options, some of which were available in the very same vending machine! We taught the importance of staying hydrated throughout the day and

26 February 2018 • EP Magazine | EXCEPTIONAL PARENT

explained every biological response that their bodies were experiencing as a result of their increased physical activity levels and the impact of their diet on each response. We even took farm to table one step further by including horticultural therapy into the program, allowing participants to get back to basics and grow their own vegetables. Within months, we were able to heal the disconnection and foster the growth of a healthy relationship between each individual and food. One outcome that we did not anticipate was the increased sense of independence one can experience as a result of understanding their relationship with food. A family caregiver of a Get FIT participant explained how her adult daughter who has Down syndrome is now responsible for grocery shopping for the entire family; not

only does she maintain the list of grocery items throughout the week, but she also determines the healthiest option for each item by comparing Nutrition Facts labels while at the grocery store. Another Get FIT participant who has autism is now able to administer his own medication as a result of Get FIT’s Young Gourmet Cooking program where he learned how to follow recipes and measure ingredients. Healing the relationship with food for these Get FIT participants made the healthy choice the easy choice while fostering an increased development in their skills for independent living. Such outcomes prompted The Family Resource Network to launch The Center on Nutrition and Disability which aims to further assist families and professionals with fostering a healthy relationship with food for people with special health care needs, chronic conditions, and their caregivers. Most recently, the Center developed two picture-based cookbooks which increase the opportunities for visual learners to create their favorite healthy recipes independently. Each recipe in the first cookbook was selected by Get FIT participants as they continue to collaborate with program developers to ensure an inclusive voice in all programs and actives. The second cook book was developed using recipes that can be created on a SNAP budget using locally accessible foods. Recognizing the various cultural backgrounds among Get FIT participants, HAPPY OUTLOOK: Participants the Center’s next cookbook experience an increased sense of will feature recipes from dif- independence as a result of ferent parts of the world. understanding their relationship The Center on Nutrition with food. and Disability’s Dine with an Expert webinar series, which will launch later this year, will bring experts in the field of dietary therapies to the table so that families may have access to accurate and evidence-based dietary information. The two most popular topics relating to questions about at the Center pertain to gluten-free diets and the ketogenic diet. While we typically refer these questions to local experts, we recognize that there is a lot of misinformation on the internet about these dietary therapies. Gluten-free diets have more recently been added to the list of widely misused diets and are not always accompanied with medical advice or recommendations from an expert. Medical professionals often prescribe gluten-free diets for individuals who have celiac disease or a gluten sensitivity. However, many health enthusiasts have adopted and transformed the gluten-free lifestyle into a “get skinny quickly” fad. I recently watched a television show that featured two individuals debating who was healthier; one was on a self-prescribed strict gluten-free diet, and the other was practicing portion control. After

extensive lab tests, their physician concluded that they were both equally healthy. With the depth of misinformation available online pertaining to such diets, the Center will adopt many of the Get FIT practices by focusing on providing accurate and accessible information directly to the families who truly need it. Through simple recipes, accurate fact sheets and webinars that feel like informative dinner parties, the Center on Nutrition and Disability aims to become your inclusive partner in creating and maintaining a culture of health in your home as you seek to heal your relationship with food. • ABOUT THE AUTHORS: Adeola Sonaike, PhD, MPH, CHES is the Senior Vice President of Health at The Family Resource Network, where she works to advance the health of people with special needs, chronic conditions, and family caregivers. Dr. Sonaike attended Rutgers University where she attained a Bachelor's in Biology, and Walden University where she attained a Master's in Public Health and a PhD in Public Health- Epidemiology. Dr. Sonaike is also a Robert Wood Johnson Foundation Culture of Health Leader where she is focused on building an inclusive culture of health. The Family Resource Network (FRN) is a comprehensive, family-focused, organization designed to meet the growing need for community based programs and services for individuals and their families with continuing needs. For almost 50 years, FRN has helped thousands of New Jersey families with a variety of disabilities and chronic conditions connect with resources and support services they need to live full and happy lives. FRN’s network agencies are: Autism Family Services of NJ, Caregivers of NJ, Epilepsy Foundation of NJ and the Family Support Center of NJ. Please visit www.familyresourcenetwork.org for more information or call (800) 376-2345.

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EXCEPTIONAL PARENT | EP Magazine • February 2018 27

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COVER STORY

Mealtimes are about a lot more than just the food we are eating, and excluding a person from this socialization and bonding time just because they can’t eat like the rest of the family can be hurtful and psychologically damaging to the entire family. Look for ways to bring back the joy of food and mealtime!

PARENTS PERSPECTIVE:

A CHILD FEEDING TUBE

CARING FOR WITH A

BY JULIE & TONY BOMBACINO

28 February 2018 • EP Magazine | EXCEPTIONAL PARENT

PHOTO BY JOSEPH GONZALEZ OF BLACKBEAN PHOTOGRAPHY

diet and nutrition TH E

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“ IT TOOK US A LONG TIME TO GET HERE, BUT WE NOW SEE AJ’S FEEDING TUBE AS AN INTEGRAL TOOL IN KEEPING HIM AT HOME AND HEALTHY. ” ur son has, and gets all of his nutrition from, a feeding tube. Serving nutritious food that everyone will eat is hard enough for any family at mealtime, but caring for a child with a feeding tube presents a new set of challenges. We were thrown into learning about feeding tubes very unexpectedly when our second child, AJ, had a 45-minute seizure when he was six months old. He had to have a feeding tube placed due to suspected aspiration after seizures. Interestingly, most feeding tubes are placed not because the digestive system doesn’t work, but because the person can’t safely get food into their stomach. Chewing and swallowing are complex neurological functions that can be compromised due to a number of conditions and factors. Estimates put the number of people living at home with a feeding tube in the United States at 500,000 to one million. Chances are you know someone who has had a feeding tube for nutrition at some point in their lives. There’s been a marked increase in the number of feeding tubes placed over the past 15 years, primarily due to medical advances keeping people alive longer than ever before. Think of NICU babies, those with ALS or certain oral cancers – the feeding tube extends the life of many with these conditions. Now, almost six-and-a-half years after AJ had his tube placed, the day-in-the-life picture of our family probably looks very similar to most, with the big exception that AJ cannot walk or eat with his mouth. These physical limitations, along with his inability to verbally communicate his needs, add a

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HEALTHY, HAPPY AND HOME: The Bombacinos (from left to right) Julie, AJ, Tony and Luca. “It took us years to come to terms with this and to finally look at AJ’s tube as a huge blessing to our family – our son is here with us, relatively healthy and we can manage most illnesses at home.”

new level of complexity for dual-working parents with two school-aged children. Feeding AJ through his tube has become the norm for us. Aside from the obvious health benefits of eating a diet of real, whole foods (no added sugars or preservatives in his diet, he NEVER complains about eating his veggies!) – we also have no problems giving his daily medications, no arguments about AJ not liking something, and complete control over what goes into his body. It took us a long time to get here, but we now see his feeding tube as an integral tool in keeping him at home and healthy. There are challenges we still face, such as going out to dinner as he gets incredibly bored sitting around watching us eat. AJ can’t self-feed so every morsel of food he gets is fed by one of us. We have to watch for physical clues when he’s full or doesn’t want to be fed, and the psychological implications of not being able to nourish our son the same way we do our daughter and the social aspects of sharing family meals still impact all of us, even after all these years. So what does a typical day look like for us? AJ’s day begins between 5 and 6 a.m. For breakfast, we give him two seizure medications, eight ounces of water, 16 ounces of his blended food and then flush with a little more water. We syringe (bolus feed) AJ using two-ounce syringes so between the two medicine syringes, we are drawing up and pushing another 12 syringes within this hour. He can take his food faster, but we don’t like to rush his breakfast too much. Then it’s off to school before seven a.m. If he’s home for the day, we repeat the same 12 syringes (eight ounces water and 16 ounces of food) for lunch.

EXCEPTIONAL PARENT | EP Magazine • February 2018 29

Around four p.m., AJ gets half a dose of seizure meds and four ounces (two syringes) of water. Sometimes we’ll add a snack of his blended food if we think he’s hungry or if dinner may be later. At dinnertime, AJ gets two more medical syringes of his seizure medication, four more ounces of water and 16 ounces of blended food (which is eight more syringes).

ever bottle-fed a baby, you can relate to the amount of work that goes into hand-washing bottles and parts – it’s a similar process for us. This is the bare minimum when he’s well and does not need additional medications or more fluids during warm weather. For years, Julie was also prepping, cooking, chopping and blending his meals ahead of time as he was one of the many people with a feeding tube that cannot tolerate the commercial formulas that were on the market prior to us creating Real Food Blends. Now, AJ gets our ready-to-feed real food blends for most meals, although we occasionally blend fresh food for him. he daily to-do list of keeping any child fed can be long and laborious, but the added step of having to tube-feed every meal is often exhausting. Whenever we get down about having to feed AJ, or see the stares we get when feeding him in public, we try to remember it’s possible AJ wouldn’t be here without his feeding tube. It took us years to come to terms with this and to finally look at his tube as a huge blessing to our family – our son is here with us, relatively healthy and we can manage most illnesses at home. Another positive is that AJ serves as the Chief Inspiration Officer of Real Food Blends, the company we created to provide actual 100% real food blended meals for people with feeding tubes.

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It equates to five individual medical syringes being pushed per day, and 36 times we pull up individual two-ounce syringes of water and food per day. We find the syringe (bolus) method works best for AJ and our family. Some people prefer to use pumps or gravity bags, but AJ won’t sit still long enough for that. We go with what works best for us and we urge others to find the method that works for them. We then start the cleaning process of all these syringes! If you’ve

ABOUT THE AUTHORS: Julie and Tony Bombacino are the co-founders of Real Food Blends, maker of 100% real food meals for people with feeding tubes. Prior to Real Food Blends, they both spent 15+ years in various marketing leadership roles helping companies like Road Runner Sports, United Airlines, Andersen, optionsXpress and Restaurant.com reach new levels of success. They both enjoy mentoring the next generation of marketers and entrepreneurs. They reside in Indiana with their two children, Luca and AJ.

FOOD FOR THOUGHT : FIVE FEEDING TUBE TIPS FROM THE BOMBACINOS we’ve learned a lot over the years and from our son, aJ. our advice as veteran tube-feeding caregivers:

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try food. If the digestive system is still intact and working, it’s very possible that a person with a feeding tube would still benefit from a wide variety of whole food. Feeding tubes do not have to mean relying only on commercially-prepared formulas. The health benefits of eating fruits and vegetables are obvious, and we think most will find there’s a psychological boost too, since its not nearly as depressing to feed a meal like the rest of the family is having versus a can of white, processed, synthetic formula. Always consult your medical team before making any dietary changes.

it wiLL get better. Those first few months with AJ were so incredibly difficult for our entire family. We were trying to figure this whole thing out. He was miserable with constipation and daily vomiting, and the stress level in our home was sky-high.

seek support. Join tube-feeding groups to learn tips and tricks, but also to not feel so alone on this journey. We are a part of a wonderful Facebook community that relies on each other for support.

there are very common side effects that come along with a formulaonly diet, but this can be managed, sometimes by adding real food to the body and sometimes with additional medications. Either way, daily vomiting, constipation, diarrhea, nausea, severe reflux, extended feeding times, volume intolerance, etc. are all signs of formula intolerance and can typically be treated.

LastLy, maintain your famiLy meaLtimes. Have a chair at the table for your loved-one with a feeding tube so they can enjoy the conversation and feel included. Mealtimes are about a lot more than just the food we are eating, and excluding a person from this socialization and bonding time just because they can’t eat like the rest of the family can be hurtful and psychologically damaging to the entire family. Look for ways to bring back the joy of food and mealtime!

30 February 2018 • EP Magazine | EXCEPTIONAL PARENT

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TAKING CARE OF YOURSELF WHILE CARING FOR ANOTHER

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32 February 2018 • EP Magazine | EXCEPTIONAL PARENT

Parents of children with disabilities, like all parents, love their children and want the best for them. They understand that there are challenges in raising all children. But the reality is that parents of children with disabilities and special healthcare needs face both the reality of raising any child, and the reality of the additional responsibilities that come from raising children with special needs. An article in the New York Times, “The Reluctant Caregiver,” 1



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Not a caregiver you say? Many parents of children with special needs suddenly realize, “How many other parents are still

BUT I DON’T WANT TO BE A CAREGIVER!

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Did you know that November of each year is National Family Caregivers Month by presidential proclamation? In part the proclamation reads: “Whereas, the primary source of community-based services and the cornerstone of our long-term care system are care recipients’ family members, friends and neighbors who help their loved ones maintain their independence and their quality of life; and…according to the National Alliance for Caregiving, there are roughly 67 million family or informal caregivers in the United States...”. This means you’re not alone!

diapering their five year olds, or feeding them baby food? How many of us may even be lifetime caregivers?” While it’s the responsibility of parents to take care of their children, they need to recognize that they are doing more than other parents, and so are also caregivers.

mentally weary of the constant changes, lifting, medications, paperwork, insurance denials, treatments. They may be tired of deciding if it’s safe to maintain their child at home or do they need to go to the emergency room, and of worrying if they guess wrong as their child’s life can literally be in their hands.

IMAGINE BEING THE CARE RECIPIENT

BUILDING THE FUTURE: The CDC’s Building Healthy Inclusive Communities initiative recognizes that “creating opportunities for healthy, active living by people of all abilities is a priority as we plan our communities.”

Families may wonder what it must be like for their child going through the many challenges they face. Research has shown that some children can actually suffer PTSD 2 (Post Traumatic Stress Syndrome) post hospitalization and also that 1 in 3 (even adults) suffer PTSD after being on a ventilator.3 The child may not feel safe when returning home from the hospital. Families can use bedrails, baby monitors, a bedtime routine, and regular relaxation techniques like reading, soothing music or sounds, etc. to help address these fears. Parents can think about what it must be like to have to depend on someone to hear you even if you just need a glass of water. Or what if the child can’t get to the bathroom or needs help with personal care. Families can think about how their child might feel if they’re hooked up to medical equipment. The child may be scared of being sick, going through uncomfortable or painful medical procedures, and does not know what to expect. Parents can think what it must feel like for the child to depend on other people for things the child used to do for him/herself, or that other children can do for themselves.

BEHAVIOR IS COMMUNICATION explained that families may feel a sense of reluctance for many reasons. Most families didn’t plan on being “special parents,” or caregivers of children with special needs, some of whom may need lifelong care. Sometimes special parents are reluctant caregivers because they just want to be mom or dad, and enjoy time with their child. They’re tired of being a teacher, behaviorist, physical therapist, case manager, nurse, etc. Sometimes parents are just tapped out with round-the-clock care. Or they don’t want to go to the hospital out of state, and live apart from their spouse for who knows how long, again. Parents may be physically, emotionally,

When a child acts out, it is most likely that they can’t help it. Behavior may be the worst when the child is in pain, hungry, etc. Their behavior is how they’re communicating. They feel like they have no control over anything in their world. By remembering this, then it helps parents not be “The Reluctant Caregiver.”

THE TOLL OF CAREGIVING It is commonly acknowledged that caregiving affects the caregiver’s health. This is true for caregivers across the lifespan whether they are parents of children with special needs, “well-spouses”, or involved in eldercare. There can be a physical toll, for example back problems lifting a care recip-

ient. There is also an emotional toll and stress affects health. There are also publications from caregiver organizations on avoiding medication errors, how to talk to doctors or deal with hospitalization, their own health, etc. (See Resources). In addition, caregiving can affect employment. Parents may need to use the Family Medical Leave Act (www.dol.gov/dol/topic/benefitsleave/fmla.htm) and some states have paid leave.

HOW TO TAKE CARE OF YOURSELF (SO YOU CAN CARE FOR YOUR CHILD) Parents need to make sure that they go to their own doctor appointments for regular physical checkups, dental, vision, etc. They get so caught up in their child’s appointments, they often neglect their own. Here are some practical tips: • Do preventive care like annual physical, flu shot, vitamins, etc. • If parents are depressed (up to 75% of caregivers have this happen) get help. Asking for help is a sign of strength, not weakness. • Relieve stress through exercise, respite, etc. • Parents shouldn’t feel guilty for taking breaks because it’ll give them more energy to be a better caregiver. • Get support. Parent-to-Parent matches trained volunteer parents to families of children with the same condition. Finding out about their child’s condition helps parents know what they’re dealing with and they can partner with medical and educational professionals in making decisions. Parent Training Centers can help parents with schools and the early intervention system. Parents Anonymous support groups can also help (the majority of parents who participate in these groups are parents of children with special needs). Sometimes the hardest thing about being a family caregiver of a child with special needs is not knowing what to expect or just needing a listening ear. Sometimes just finding someone “who’s been there” will help parents of children with disabilities get information on their child’s condition and also talk to other families. This way they won’t feel so helpless or hopeless. Parents can talk to other families for information and support, making their family unit stronger.

EXCEPTIONAL PARENT | EP Magazine • February 2018 33

DOUBLE DUTY: Parents of children with disabilities love their children and want the best for them. They understand that there are challenges in raising all children, but the reality is that parents of children with disabilities face both those challenges and the reality of the additional responsibilities that come from raising children with special needs.

RESPITE & OTHER STRESS RELIEVERS FOR FAMILY CAREGIVERS Parents need to take care of themselves so they can take care of their child. Sometimes families may be able to involve their child, which is always best if possible, such as going on walks or doing yoga together. Even if the child doesn’t participate, there may be a way for a parent to try to do healthy things while supervising their child. For example, the child could read or play a videogame while the parent does an exercise video in the same room. Parents may just need some downtime, rather than “doing something.” Sometimes families can read, do puzzles, etc. alone or together while their child is engaged in another independent activity. Or sometimes reading to the child, or just being in the same room reading together, is calming. Music or meditation can also be helpful. Even having a “quiet corner” that the parent uses to regroup with candles, aromatherapy, etc., could give the parent the relaxation that s/he needs. If both parents are present, one parent can watch the child while the other takes a mini-break, even if it’s just for five minutes. Ultimately, parents of children with disabilities may just need to get away for a bit. Parents have to feel comfortable with the person who will be with their child, so it may be a gradual process. Families may want to stay home the first time, and then increase the time away. Even a few hours a month is beneficial. In some states, children with developmental disabilities or other conditions, 34 February 2018 • EP Magazine | EXCEPTIONAL PARENT

receive respite services. The source of respite will differ from state to state. Many times, the Title V (Maternal/Child Health) Program can give families leads on how to find care. Family Voices/Familyto-Family Health Information Centers and Parent-to-Parent programs can also give parents helpful resources. There is also a national respite locator for families (see Resources.) There are many ways that parents can de-stress, for either a short time period or hours. Parents of children with special needs can talk to other families, take care of their physical/mental health, or just get away for a bit and come back refreshed.

WHEN A FAMILY CAREGIVER IS “OUT OF COMMISSION” Parents may worry who would take care of their child if something happens to them temporarily. Family caregivers need to have a backup plan in case anything changes with the primary caregiver of the child with special needs. There are ways to get backup plans in place and people who can help families do that (see Resources.)

HELP FOR FAMILY CAREGIVERS AFTER THEIR CHILD IS HOSPITALIZED Medications: Parents should have the information they need to care for their child at home after hospitalization. Even during hospitalization, families can ask what prescriptions their child is getting instead of waiting until they get the list to go home. Find out

if medications cause side effects. Also, if the child has other issues, such as high blood pressure, thyroid disease, diabetes, cardiac problems, cholesterol, etc. parents can ask if new medications will affect other conditions. Families can also check if new medications will interact with current meds and give them at different times. A great resource is the PDR (Physician’s Desk Reference www.pdr.net) listing medications and side effects. A tool for families, which includes medication, uses and a checklist for a pill organizer is found at www.mymedschedule.com. Daily Routine: Parents will need to check if their child can resume their usual routine. After hospitalization, some children may have special diets, need dressing changes, or may not to be able to bathe/shower as usual. Families “PaRenTs may be should be taught how PhysiCally, emoto use any equipment Tionally, menTally or administer medications, including shots, weaRy of The Conbefore heading home. sTanT Changes, Complications: lifTing, mediCaSometimes, besides Tions, PaPeRwoRk, obvious medication insuRanCe denials, side effects, other conTReaTmenTs. They ditions may surface. Even if a child may not may be woRRying if have had a condition They guess wRong like high blood presas TheiR Child’s sure, sometimes meds. life Can liTeRally can cause them. be in TheiR hands.” Parents can ask if they should check vital signs like weight, blood pressure, temperature and when to call the doctor. Families may want to check if the pediatrician or specialist have after hours contacts. Extra Helping Hands: It’s possible that a child could need more care once home. If so, families should contact nursing/home health agencies before discharge to make sure that the insurance covers it and that there is a schedule set up before the child is home. Parents can also set up home instruction with their school district if their child can’t return to school immediately. If their child stays in the hospital for an extended period, hospital instruction should also be arranged. What Do Families Need? Quite simply it depends on where they are in the process of caring for their child. If the parent is just getting a diagnosis, they need information on the condition and emotional support. For detailed information including research, databases, literature etc. the Maternal & Child Health Bureau has “Knowledge Paths” on some conditions. The American Academy of Pediatrics also has a website for families for general health information, including special needs. Long-term Caregiving: Some children may need lifelong care. Strength is definitely needed. But to maintain that strength, caregivers need to take care of themselves in order to take the best care of their loved ones. Strength and self-care come from various sources: Physical: Even when a child is in the hospital, families may be able to bring food to store in the family lounge and

microwave instead of going to the cafeteria. This way, they’re actually spending more time with their child and eating better. Families will find that hotels and Ronald McDonald Houses have gyms because they know how important this is for parents. If staying nearby, families can walk to the hospital and use stairs instead of elevators. Parents may be able to do quiet yoga, Tai Chi, or qigong in the room while the child sleeps. If possible, it is good for the child to walk the hallways, or even go in a wheelchair rather than staying in bed. Mental/Intellectual: Parents can find out as much as they can about their child’s condition and treatment options so they know they’re making the best decisions for her care. Many hospitals have in-room computers or family libraries. Parents can attend daily doctor’s rounds to get the most up-todate information and ask questions. It may help to keep a notebook with a medication list updated with changes and notes on unusual vital signs, test results, treatment, and what to resolve before returning home. Emotional/Spiritual: This may be the most difficult area as there may be no time to process information and parents have to act like everything was fine in front of their child. It is particularly hard for single parents on their own. Professionals may not ask families how they are when they watch their child being rushed to the emergency room, transported by ambulance to another hospital, or intensive care unit, not sure if the child’s going to make it. Parents may need to be reminded when they feel like they can’t do anything for their child that they just need to be mom or dad, not a doctor or nurse. Hospital social workers are also available for parents. Practically speaking, parents can make a “phone tree” where they call one family member who updates others. Parents need to keep their cellphone line open at all hours so doctors can reach them. For those who struggle spiritually, “At the Heart of the Matter: A Spiritual Journey for Caregivers” by Dr. Green is a good read.4 The book gives caregivers the “opportunity to personalize his or her caregiving journey based on their individual needs.” Remember that spirituality doesn’t necessarily mean religion; it’s whatever the personal transformation means to the individual. The book has inspirational quotes, poems, thinking points, caregiver assessments and short chapters as time is limited for caregivers. For those in the hospital, many have chapels or quiet meditation rooms for families.

FAMILIES CAN SEE THEIR CHILD WITH SPECIAL NEEDS IN A NEW WAY Family caregivers of children with disabilities can be encouraged by “reframing” how they see their child. Reframing “is a way of viewing and experiencing events, ideas, concepts and emotions to find more positive alternatives.” 5 Getting a Better Understanding of the Child: Dr. Ross Greene, the developer of Collaborative Problem Solving, says “children will do well if they can.” What this means is children are doing the best they can with the skills that they have. It is important for family caregivers to realize that all behavior is communication and sometimes the only way children can communicate is by “acting out.” This doesn’t mean the temper tantrums seen in EXCEPTIONAL PARENT | EP Magazine • February 2018 35

TAKING CARE : RESOURCES FOR FAMILY CAREGIVERS caregiving/disabiLity resources

famiLy support

the arc

http://www.p2pusa.org/parents/

parent-to-parent www.thearc.org/find-a-chapter

caregiver action network-resources

parent center hub Find your Parent Center www.parentcenterhub.org/find-your-center or Spanish www.parentcenterhub.org/lista-espanol/ parent center hub - specific condition resources

http://caregiveraction.org/resources

www.parentcenterhub.org/topics/disability/

caregiver action network - caregiver tooLbox http://caregiveraction.org/resources/toolbox

insurance & medicaL heLp parents anonymous support groups http://parentsanonymous.org/programs/parents-anonymous-groups/network-map/

nationaL medicare office www.medicare.gov or 24 hr. Hotline (800) 633-4227

respite and other resources

ship (state heaLth insurance assistance program) counseLors for medicare

www.amchp.org/Policy-Advocacy/MCHAdvocacy/Pages/StateProfiles.aspx

titLe v (maternaL/chiLd heaLth) mchb knowLedge paths on conditions www.ncemch.org/knowledge-base.php

www.medicare.gov/contacts/search-results.aspx?customresult=AllSHIP

famiLy voices www.familyvoices.org/states

centers for medicaid/medicare “Who Pays First” guide on insurance (private/Medicaid/Medicare)

famiLy-to-famiLy heaLth information centers www.fv-ncfpp.org/f2fhic/find-a-f2f-hic

www.medicare.gov/Publications/Pubs/pdf/02179.pdf

mentaL heaLth heLp for chiLdren and famiLies

american academy of pediatrics (famiLy site) www.healthychildren.org

federation of famiLies for chiLdren’s mentaL heaLth www.ffcmh.org/chapters

or Spanish http://translate.google.com/translate?hl=en&sl=en&tl=es&u=www.ffcmh.org

arch nationaL respite Locator http://archrespite.org/respitelocator

reframing perspective nationaL aLLiance on mentaL iLLness or

https://www.nami.org/Find-Support/Family-Members-and-Caregivers Spanish www.nami.org/Find-Support/Diverse-Communities/Latino-Mental-Health/Lasalud-mental-en-la-comunidad-latina

36 February 2018 • EP Magazine | EXCEPTIONAL PARENT

ross greene’s website “Kids will do well if they can!” www.livesinthebalance.org

typically developing children. This is a “meltdown” in which the child is so overwhelmed that they either lash out or shut down. Family caregivers need to recognize if their child’s behavior is a “skills vs. a compliance” issue. Is it that the child won’t do something, or that they can’t? Maladaptive behavior may be the only thing that has worked for the child in the past. The child needs to learn appropriate replacement behaviors and skills. It doesn’t go from “zero to sixty.” If the child is overwhelmed in class, for example, the goal may not initially be to get him/her to sit still for an entire class. The child can learn to ask for breaks, or if nonverbal, use a picture card. At first, reinforce the request every time. Then work towards asking appropriately. Remember that if the child acts out and then is removed from class, he/she learns that this allows “escape/avoidance.” Even negative attention is reinforcing! “Just Walk a Mile in His Moccasins”: As frustrating as it may be for parents to deal with their child’s behavior, parents should think about what the child is going through. While it’s true that some things take longer and it would be easier for parent to do rather than the child, if “TheRe aRe many anyone had those special needs it would take ways family CaRethem longer too. giveRs Can have Families can think of moRe PosiTive how frustrating it inTeRaCTions wiTh would be if they couldTheiR Child wiTh n’t hear well and needsPeCial needs. ed things repeated multiple times or used “CaTCh Them being alternative methods of good” means To communication. Or ReinfoRCe The how hard it would be if Child when he/she they had poor muscle is doing someThing tone, just to put on a pair of socks. Parents PaRenTs wanT To be can think how it would RePeaTed. ” feel to walk into a store if all the lights seemed brighter, sounds seemed louder, smells seemed stronger and they all hit at once causing sensory overload. There is a difference between “disability awareness” and “disability sensitivity.” 6 Then Reimagine: Just like taking a picture and placing it in a new frame, parents can reframe their child’s special needs. This is especially true for children with mental health issues. Just like physical conditions, mental illness is physiologically based. The organ affected just happens to be the brain in which symptoms manifest as behavior. No one would blame someone with diabetes who needed insulin. There are also positive ways to describe characteristics for all children. Some examples are… Instead of: vs. Reframing: Disabled Fearful Hyperactive Stubborn Learning Disabilities Persistent Loud

Differently abled Cautious Full of energy Determined Learning Differences Committed Exuberant

There are many ways family caregivers can have more positive interactions with their child with special needs. “Catch them being good” means to reinforce the child when he/she is doing something parents want to be repeated. Rather than telling the child “don’t” do something, families can tell the child what they do want them to do. For example, instead of saying “don’t throw your clothes on the floor” say “please put your clothes in the hamper.” Although it may be more polite to ask, rather than tell a child to do something, some children interpret things literally and if parents ask if the child can do something they may simply reply no. They’re not being defiant; the child is simply expressing a preference as he/she thought it was a choice. By reframing how they see their child through a more positive lens, family caregivers can better help their child with special needs.

FINALLY, GRATITUDE Family caregivers may have a variety of reasons to be grateful. Perhaps doctors have literally saved their child’s life on multiple occasions. Families need to have backup plans. Maybe there are local hospitals that can stabilize the child, but not admit, before transporting to a children’s hospital. Families can also check with current doctors to make sure they can consult with whichever local hospital. Pediatricians may also offer to facilitate a discussion between the local hospital specialists as the primary care physician. Family caregivers may also have gratitude for little things. If the child doesn’t have much energy or strength, things like just watching TV, iPad, videogames help but it’s also an opportunity to spend more time with the child. If the child isn’t up to walk around the block, parents can start small, like walk to the end of the driveway, then walk to the corner. Families can read together, do puzzles, do word searches, listen to music or play instruments. Even for special occasions, if the family can’t get out, perhaps they can make a gift wish list, shop online, and have gifts delivered home. Parents can even feel grateful that their child is home and well enough again to keep them up at night. By taking care of themselves in all of these areas, families can truly become “resilient caregivers.” • ABOUT THE AUTHOR: Lauren Agoratus, M.A. is the parent of a child with multiple disabilities. Her daughter Stephanie has five life-threatening conditions, plus autism, just to keep it interesting. Lauren serves as the Coordinator for Family Voices-NJ and as the central/southern coordinator in her state’s Family-to-Family Health Information Center (F2FHIC). New Jersey’s PTI, F2F, and Parent to Parent program are all housed at the SPAN Parent Advocacy Network (SPAN), found at www.spanadvocacy.org. Family Voices/F2FHICs in other states can be found at http://www.familyvoices.org/states.

References 1. https://newoldage.blogs.nytimes.com/2013/02/20/the-reluctant-caregiver/ 2. http://complexchild.org/articles/2013-articles/march/ptsd-complex-medical-needs/ 3. https://www.medicalnewstoday.com/releases/256882.php 4. Caregiver Support Services –Dr. Eboni Green www.caregiversupportservices.org & radio broadcasts/playback www.blogtalkradio.com/caregiversupport 5. https://en.wikipedia.org/wiki/Cognitive_reframing 6. https://www.aaanativearts.com/native-american-poetry/walk-a-mile-in-his-moccasins

EXCEPTIONAL PARENT | EP Magazine • February 2018 37

Young Athletes engages families by highlighting the power of play. Young Athletes includes a series of structured physical activities, songs and games to teach basic motor development skills for children with and without intellectual disabilities, ages 2 to 7 years old.

StArting ‘Em

g n Yo u BY REBECCA RALSTON

I

n a small community near Phitsanulok, Thailand, a young boy named Kongpob Yangkam lives with his grandparents and 17-year-old sister. Kong, as his family lovingly calls him, has intellectual disabilities and struggles with hyperactivity and attention span. When he was a young child, he moved with his grandparents to Phisanulok so they could take care of him while they started a small orchard. His mother stayed in Bangkok to work and earn money for the family. 38 February 2018 • EP Magazine | EXCEPTIONAL PARENT

PHOTOS PROVIDED BY STEPHANIE CORKETT/SPECIAL OLYMPICS

A

t the age of four, Kong attended an inclusive school in his community, but teachers in the school found it challenging for him to keep up with the other students and they were not able to provide him any special accommodations. Unfortunately, after a short period, Kong left the inclusive school. Kong’s sister also had to leave school so she could be responsible for Kong’s day-to-day care while his grandparents managed the orchard However, Kong’s sister proved that the love and dedication of a family member is enough to move mountains. After some time, his sister found the Phitsanulok Special Education Centre. She brought Kong to the Centre where he began participating in Special Olympics Young Athletes, along with other therapies and life skill development programs. The family began to see an amazing change in Kong, but the Centre’s distance from their home, along with constant flooding in the area, meant that Kong was only able to go to the Centre once or twice per week – and his sister

EP MAGAZINE EDITORS’ NOTE: Fans, athletes, coaches, families and supporters of Special Olympics can qualify for a free yearly digital subscription to EP Magazine by contacting us. Please click on: http://ep-magazine.com/so.php

knew for Kong to really thrive, he needed support on a daily basis. Kong’s sister attended a Young Athletes family member training at the Centre and learned how to make equipment and adapt the activities at home. After the training, Kong and his sister began conducting Young Athletes activities at home every day – developing a strong structure for Kong that emphasized gross and fine motor development. Since starting Young Athletes, Kong’s family has seen his attention span change dramatically and his behaviors have improved. Kong will now spend time playing by himself, which allows his grandparents to tend to their orchard and his sister to focus on trying to finish her education. He is also more socially aware and wants to be supportive of his family – he asks if he can help his family members with the house choirs – something that is critical for his family who struggles to make ends meet. Kong’s story is one of perseverance, love and dedication. Kong and his family are just one representation of the over 160,000 Young Athletes and families around the world who are striving to ensure children with intellectual disabilities are given a chance to succeed. Every day around the world, Special Olympics transforms lives by creating communities of acceptance and inclusion for people with intellectual disabilities. While traditional Special Olympics programming starts at age eight, Special Olympics Young

WHILE WE’RE YOUNG: (Opposite page) Kongpob Yangkam with his sister and grandparents. (Above left) Kong participates in structured play activities with teachers and volunteers at the Phitsanulok Special Education. (Above right) A Young Athlete runs in the shadow of Mount St. Helens. Athletes opens the door to support families who are newly dealing with their child’s intellectual disability. Often, the time immediately after the diagnosis is a tumultuous one for families. There are so many feelings, including fear, disappointment, confusion, isolation and anger mixed with protectiveness, hope, pride and love. In this time of uncertainty, families strive to find a community that can understand and accept their child, while also supporting them to be successful in the future. This is where Young Athletes comes in. Young Athletes engages families by highlighting the power of play. Young Athletes includes a series of structured physical activities, songs and games to teach basic motor development skills for children with and without intellectual disabilities, ages 2 to 7 years old. Through these play activities, we see children grow and develop in valuable motor skills, like walking and running, while also enhancing social and cognitive skills through interaction with their peers with and without intellectual disabilities. The opportunity for growth leads to a change in perception and a recognition for families of the value and worth of their child.

EXCEPTIONAL PARENT | EP Magazine • February 2018 39

COMING ON STRONG: (Above left) Yareni practices lifting weights. (Above right) A child at a Special Olympics event in Haryana, India runs through hula hoops.

B

ut more than that, Young Athletes is helping to change perceptions and attitudes in the community towards children and adults with intellectual disabilities, which causes a ripple effect. Positive and powerful experiences with people with intellectual disabilities lead to opportunities for inclusion in education, in the workforce, in healthcare and in much more. Inclusion is key to ensuring people

with intellectual disabilities are successfully integrated into the fabric of society. Giving children with intellectual disabilities a chance to learn, grow and have fun is not just nice to do, it is critical. For the vast majority of children with intellectual disabilities and their families around the world, access to comprehensive and effective early childhood development programs is limited and frequently non-exis-

40 February 2018 • EP Magazine | EXCEPTIONAL PARENT

tent. During the early years we have the opportunity to impact lifelong success for our athletes – both on and off the playing field. In turn, Special Olympics athletes make our communities better by sharing their gifts. • ABOUT THE AUTHOR: Rebecca Ralston is Senior Manager, Young Athletes, Special Olympics International.

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According to the Centers for Disease Control and Prevention (CDC), 500,000 teens with autism will age into adulthood over the next decade and housing will become one of the greatest concerns for them, their parents and other caregivers. Right now, an estimated 80,000 adults with autism in the United States are on waiting lists for publicly-funded residential placements and services. The waiting periods can run up to 15 years and the number of those waiting is only expected to grow. Where housing does exist, it isn’t exactly what most parents or their adult children with autism want.

BUILDING SUPPORTIVE, PERSON-CENTERED COMMUNITIES FOR ADULTS WITH AUTISM BY DONNA M. AUTUORI ne father of 17-year old triplets, one daughter and two sons, both of whom are on the autism spectrum, has made developing housing options for his sons and other young adults with autism a top priority. In 2015, Charles Massimo, a wealth manager, founded Long Island Autism Communities, Inc., a privately-funded, 501(c) (3) not-for-profit. Its mission is to provide better housing solutions for adults on the autism spectrum that are safe, supportive, offer every opportunity for a fulfilling life, and provide a continuum of care when parents and guardians no longer can.

O

FILLING A VITAL HOUSING NEED AND MORE FOR ADULTS WITH AUTISM Charles Massimo, who serves as Chairman of Long Island Autism Communities and was recently appointed to the New York State Governor Andrew Cuomo’s recently formed New York State Autism Spectrum Advisory Board, has the same goals for his sons as most parents of children on the spectrum. “I want them to have a healthy life filled with positive relationships and activities they enjoy. I also want them to be welcomed into a safe, supportive community which gives them access to opportunities for employment, recreation and socialization within the surrounding area,” said Massimo. “And, equally important, I want to know that they will be taken care of when their mother and I no longer can.” Without Massimo and others like him across the nation trying to create supportive communities for adults with autism, the majority

of young adults with autism would be destined to a much less positive future. The National Autism Indicators Report of 2015 found that two-thirds of young people with autism do not have a job or plans for higher education; a trend that continues into their early 20s. One in four young adults with autism feels isolated, and 79% still live at home with parents or guardians, who feel a tremendous burden from this reality. These parents want their children’s daily living and emotional needs met. They want their children living in a community where will be treated with care and respect. While no two adults with autism have the same needs, there are common concerns among their parents with respect to their housing as illustrated in a survey conducted by the Charlottesville Region Autism Action Group (CRAAG). Many parents reported: • Moderate to extreme concern about their children’s abilities to live independently; • Concern over day programs and supported employment options; • Their child’s need for assistance to navigate basic skills (e.g., cleaning, cooking, living with roommates, paying rent, etc.); and • Worry that their child would be isolated and prone toward depression. Long Island Autism Communities conducted its own survey in 2017 to better understand parents’ concerns for their adult children with autism. In response to the question, What are the three most important assurances we can offer you as you consider housing options for your adult child with autism?— parents responded: • A safe living environment, • An environment where my daughter would be happy, • A place where my child could live in a peaceful environment, EXCEPTIONAL PARENT | EP Magazine • February 2018 43

• An atmosphere respectful of his humanity with no mental or physical abuse, • An environment that will care for my daughter after we no longer can, • Emergency back-up staff, • A setting with superior and well-trained behavioral staff to make sure he is safe and his medical and physical needs are met, and • Round the clock activities to enhance his life. Professionals were also surveyed by Long Island Autism Communities. Their replies to the same question on behalf of adults with autism, included: • Access to public transportation and services, • Promote acceptance into the community, • Offer opportunities for personal growth and engagement, • Strong safety and security controls, and • Planning for after parents die or are incapacitated. It was not surprising that young adults with autism want to experience independence as many young people do. A National Housing and Residential Supports survey reported that nearly 60% of adults with autism would prefer to live in their own home with a roommate, although 30% said they would need support services daily. Feedback received from young adults with autism in the Long Island Autism Communities survey was consistent with these findings and also found that they wanted programs that helped facilitate interaction with their peers, both on and not on the spectrum, in order to gain diversified experiences and new friends.

PARTNERING WITH COMPASSIONATE DEVELOPERS To begin creating housing solutions, Massimo, his Board of Directors, which includes other parents of young adults with autism, autism professionals and other members of the business community, have determined that teaming up with developers of apartments and other residential properties will be an initial, effective strategy. Across Long Island, there are numerous multifamily projects in development, under construction or in the planning stages. Massimo and his Board are carefully reviewing these projects to determine their suitability for Long Island Autism Communities. The organization is also remaining open and watchful for opportunities to create their own project on a large piece of undeveloped land where multiple residences can be built along with perhaps a clubhouse, garden, pool and other qualify of life facilities. Besides requiring developers to understand and support the organization’s mission, a key criterion is that a project be located in close proximity to a vibrant downtown area offering opportunities for employment, volunteering, socialization and recreation, as well as access to mass transportation and other important resources. In the design and construction of the residences, consideration will be to accommodate the sensory needs of individuals on a spectrum (e.g., light and sound sensitivities), as well as enable Long Island Autism Communities to create a secure, safe environment for its community residents. One developer, Larry Gargano, has already stepped up and indicated a willingness to set aside a portion of an apartment complex he is building near Main Street in Bay Shore, New York for Long 44 February 2018 • EP Magazine | EXCEPTIONAL PARENT

Island Autism Communities’ first property. It is hoped that this first community will be completed by the end of 2018. Prior to that time, Long Island Autism Communities’ professional team will have the tough task of beginning its selection process in deciding which individuals with autism will be its first residents. Since announcing the organization, there has been a steady stream of inquiries from parents of young adults with autism and older adults on the spectrum. The Programming Committee of Long Island Autism Communities, whose members include experienced autism professionals and parents of children with autism, has developed a very thorough screening and assessment process to determine what individuals would thrive in LONG ISLAND AUTISM one of the organization’s COMMUNITIES residences and if so, INTENDS what individualized supports they need. TO BE A “There are so many RESOURCE factors to weigh and our goal is to find long-term FOR INDIVIDUALS housing solutions for ACROSS THE SPECTRUM, those who want to BOTH LOW- AND HIGHbecome one of our residents,” said Massimo. FUNCTIONING PERSONS “We intend to be a OF VARYING NEEDS AND resource for individuals across the spectrum, INTERESTS. both low- and high-functioning individuals of varying needs and interests. We will also look at whether they can be successfully integrated into our communities, and live well with others including potential roommates. In selecting residents, we will not accept any individual that could pose a threat to any others within the community.” Residents will be able to decorate and furnish their own space as they would like. Depending on whether a resident chooses a studio, one-bedroom, two-bedroom or three-bedroom apartment, there may be a need to compromise on the décor of common, shared areas such as the living room and kitchen. Long Island Autism Communities will have its own qualified personnel to provide oversight of residents and their staff on a 24-hour a day, seven days a week, 365 day a year basis. “That is an assurance we need to give the parents,” said Massimo. “We also will be installing state-of-the-art smart security and communications technology so that we can monitor visitors and be responsive to our residents’ parents and guardians should they need to reach us.”

PERSON-CENTERED COMMUNITIES FOR ADULTS WITH AUTISM Reflecting its vision, Long Island Autism Communities will be creating person-centered communities for adults with autism. In addition to the support of their own direct staff for those individuals who have direct staff, Long Island Autism Communities will be helping its residents access other resources meaningful to each individual and designed to enhance their lives. This could mean introducing them to a potential employer or nonprofit seeking volunteers, or connecting them with a resource providing therapeutic services for individuals with developmental disabilities.

Long Island Autism Communities also plans to host social events both within its community and at local parks, beaches, entertainment and cultural centers for its residents, as well as their parents, friends and neighbors in the surrounding areas. “We want our neighbors to know us and our residents to become fully-integrated and engaged with the local community,” said Massimo. “It is our goal to have our residents known on a first name basis with the local retailers, restaurant owners, bankers, etc. to build a true sense of community.”

“A LIFELONG PLAN” Long Island Autism Communities is making a commitment to its residents by creating a sustainable housing model with the assurances they and their parents need. In addition to ensuring a resident’s suitable placement within the community, the organization is committed to participating in a resident’s Individualized Life Stage Planning, working in conjunction with their parents/guardians, direct autism staff and advisors to make sure they will be able to live in the community, safely and through a continuum of support for the rest of their lives. Long Island Autism Communities will provide access to fiscal intermediary services, where needed; partner with agencies to provide back-up of residents’ own staff, should the need arise; attend support meetings with residents and their “circle of support” (i.e., family, friends and staff); and visit residents regularly to ensure their well-being.

FUNDRAISING DRIVE UNDERWAY To date, Long Island Autism Communities has been building awareness through traditional and social media, town hall-type meetings, and two major fundraisers; a concert featuring Rock & Roll Hall of Famer Jorma Kaukonen of Jefferson Airplane and Hot Tuna, and a comedy special featuring Jeff Ross, The Roastmaster General. The organization also participated in two holiday shopping benefits on Long Island; the Americana’s Champions for Charity and Mitchells of Huntington events. Additionally, funds are being raised through corporate partners including Amazon, Geico and Artisanal Premium Cheeses. With the first project identified, a major fundraising campaign will be launched in the first quarter of 2018 to help generate funds needed for operating the first community. Considering how pervasive this developmental disability is with 1 in 68 children in the U.S. diagnosed with an Autism Spectrum Disorder (Source: CDC), and the critical shortage of housing for adults with autism, Long Island Autism Communities is optimistic that the business community along with families touched by autism and others, will get behind its mission.• ABOUT THE AUTHOR: Donna M. Autuori is Secretary of the Board of Directors of Long Island Autism Communities. In her professional career, she is President of Autuori Corporate Communications, Inc., a 23-year old public relations and marketing firm serving a client base of national and global businesses. She also helps build awareness for regional nonprofits including those serving individuals with development disabilities such as Pal-O-Mine Equestrian and Life’s WORC on Long Island, NY.

EXCEPTIONAL PARENT | EP Magazine • February 2018 45

Nancy Gianni realized that she now had a mission – to change the way the world sees Down syndrome and promote acceptance for all, while providing opportunities and support for GiGi and others like her.

WELCOME TO

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46 February 2018 • EP Magazine | EXCEPTIONAL PARENT



PHOTOS PROVIDED BY KELLI HARTSOCK

When Nancy Gianni gave birth to her daughter, GiGi, 15 years ago, she thought she knew exactly what to expect of those early hours and days. She had already brought two babies into the world and was looking forward to another joyful celebration with family, friends and even the medical staff. But GiGi’s debut did not go as Nancy and Paul had planned. Her beautiful baby was unexpectedly diagnosed with Down syndrome, prompting many people surrounding the family to express their sorrow and concern. The negativity spread to the new mom, and she worried about the challenges down the road.

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ut when Nancy finally brought GiGi home, she soon had an awakening that was life-changing for her. “I realized that GiGi could do the same things that my other children could do. She was so much more than a diagnosis. She was a blessing in every way,” Nancy says. It didn’t take long for Nancy to find renewed hope, but she thought about how much easier her journey would have been if she had immediately received encouragement and education. She thought about other families in her position and the loneliness and fear of those first days after diagnosis. She realized that she now had a mission – to change the way the world sees Down syndrome and promote acceptance for all, while providing opportunities and support for GiGi and others like her. Those who know Nancy well weren’t surprised by her passion and the speed with which she began to pursue her vision. She soon founded the first GiGi’s Playhouse in Hoffman Estates, Ill., a place for families to celebrate their children and benefit from free, purposeful programs that build skills and promote confidence. The first GiGi’s Playhouse was just the beginning of an extraordinary journey that has led to more than 35 Down syndrome achievement centers throughout the United States and in Mexico, with many more in the pipeline. In fact, 14 new playhouses are slated open in 2018 and hundreds of communities have inquired about getting one, including 24 international inquiries. Why so much demand? Nancy Gianni says it’s because GiGi’s Playhouse meets the needs of an underserved population. More than 450,000 individuals with Down syndrome currently live in the United States. When parents and siblings are figured into the equation, that’s two million people who are facing Down syndrome. But, surprisingly, GiGi’s Playhouse is the only international network of Down syndrome achievement centers. “There is an urgent need for the kinds of services we provide,” Nancy Gianni says. “That’s why growth is so important to us. We know there are so many more people who need our services, and we’re working to expand to more communities where we can make a difference.” Nancy’s ambitious goal is to have a playhouse

or mobile unit serving every state in the U.S. and every major metro market by the end of 2021. GiGi’s Playhouse currently serves 77,000 individuals of all ages, providing therapeutic, educational and career training programs – all for free. The organization makes a lifetime commitment to support and empower families from diagnosis to adulthood. One of the most meaningful services GiGi’s provides, according to Nancy Gianni, is supporting families with newborn babies who have just been diagnosed. “When a new family walks through our door, we tell them, ‘Congratulations!’ We celebrate that baby as the blessing that he or she is, and we make sure family members know we will be here for them throughout the journey,” Gianni says. “And when they see all the smiles and positive attitudes throughout the colorful, inviting playhouse, they know they’ve come to the right place.” This part of the mission is so important to Nancy because she knows how much she and her family would have benefitted from the acceptance and love of the GiGi’s Playhouse environment when GiGi was a baby. She says she relishes the opportunity to bring that support to families who are just getting used to the idea of a Down syndrome diagnosis. As children grow, GiGi’s Playhouse provides them with programming that includes speech and language development, social development, gross motor development, academic support and health and wellness programs. When participants become young adults, GiGi’s focuses on helping them build goals, career skills and self confidence in preparation for future employment or volunteer work. This is done through GiGi University, a comprehensive 12-week instructional program that helps participants develop their abilities in areas like communication, money management, customer service, computer skills, team building and wellness. They even work as interns in a career training program. When internships end, GiGi’s University helps with referrals and placement in jobs, and also works with employers to provide support as needed. Chicago-area GiGi’s University graduates have the opportunity to intern at Hugs + Mugs, a popular specialty coffee and gelato

“The first GiGi’s Playhouse was just the beginning of an extraordinary journey that has led to more than 35 Down syndrome achievement centers, with many more in the pipeline.”

EXCEPTIONAL PARENT | EP Magazine • February 2018 47

that one of her favorite parts of her role is the opportunity to play with babies at the centers. In addition to being the inspiration behind the playhouses, GiGi has inspired an entire movement, called Generation G, which is all about “going beyond Down syndrome and encouraging acceptance for all,” according to Gianni. “It’s a social change movement with the goal of breaking down stereotypes and barriers.” We all can be part of the change by the way we treat others in the world, by promoting acceptance for all through #GenerationG, which is a simply conscious decision to be better every day. The theme of Generation G is simple: “Be accepting. Be generous. Be kind.” These ideas permeate everything Gianni does, and they’re the guiding force behind GiGi’s Playhouse.

CHANGING THE WORLD TOGETHER: Nancy knows how much she and her family would have benefitted from the acceptance and love of the GiGi’s Playhouse environment when GiGi was a baby. She says she relishes the opportunity to bring that support to families who are just getting used to the idea of a Down syndrome diagnosis. café that is located next to the Hoffman Estates playhouse (2350 W. Higgins Rd.). Hugs + Mugs is run by adult mentors and interns, who are responsible for all aspects of the business. In addition to selling coffee and gelato, Hugs + Mugs features one-ofa-kind handmade art pieces and home décor items created by individuals with Down syndrome. “Our programming targets many age groups, but the goal is always the same – to help participants reach their full potential, ability and possibility, and to do it for free so no one is left behind,” Gianni says. G i G i ’ s Playhouse has been able to continue to provide free services (more than 100,000 program sessions per year), even though it has experienced significant growth. Gianni gives much of the credit for this to her vast net-

work of volunteers, who run 97 percent of the programs, and, of course, to an army of generous donors. Gianni and her team tirelessly fundraise, which has enabled GiGi’s to invest $3 million per year into its therapeutic, educational and career programs. Providing a major assist on fundraising and awareness efforts is the organization’s Number One ambassador, GiGi Gianni herself. GiGi frequently travels with Nancy, appears on TV with her and speaks to groups. “I’m a big believer in miracles,” Gianni says, “and GiGi is my miracle. She gets into people’s hearts; she changes people.” GiGi has charmed the likes of Chicago news anchors, Mayor Rahm Emanuel and TV host Mario Lopez, who was the celebrity guest of honor at the 2017 GiGi’s Playhouse Gala. But she’s quick to tell you

“The theme of Generation G is simple: “Be accepting. Be generous. Be kind.” These ideas permeate everything Gianni does, and they’re the guiding force behind GiGi’s Playhouse.”

48 February 2018 • EP Magazine | EXCEPTIONAL PARENT

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ancy Gianni has received many honors since opening her first playhouse in 2002, including being named a 2016 CNN Hero. She is now about to add author to her list of accomplishments, with a memoir set to be published later this year. Called “#GenerationG,” the book chronicles Gianni’s mission to change perception following GiGi’s birth, a mission that has evolved into a global enterprise that is changing lives every day. In spite of the recognition she has received, Gianni insists that Generation G and GiGi’s Playhouse are not about her, or even GiGi. “What matters most is that we all step up and do our part to make the world more accepting and a better place,” she says. She adds that the GiGi’s Playhouse participants keep her going through the struggles she encounters. “They and their courageous families are the real heroes. They inspire me every day.”• ABOUT GIGI’S PLAYHOUSE GiGi’s Playhouse Down Syndrome Achievement Center’s mission is to change the way the world views Down syndrome through national campaigns, educational programs, and by empowering individuals with Down syndrome, their families and the community. GiGi’s Playhouse offers free therapeutic and educational programming to individuals with Down syndrome and their families.

Raising Awareness of the Benefits of Music in Therapy Leading regional musical organizations collaborated in a distinctive chamber music event on February 2, 2018, to help raise awareness of the benefits of music in therapy. The Chattanooga-based nonprofit organization, Music Therapy Gateway in Communications (MTGIC), initiated the innovative series of educational concerts and informational lectures in 2013, which has now become a yearly

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event. Grant funding from the Tennessee Arts Commission has supported each concert, enabling admission to be free of charge. Erlanger Health System, Orange Grove Center, Exceptional Parent Magazine, the University of Tennessee College of Medicine Chattanooga, and the University of Tennessee at Chattanooga’s Department of Performing Arts sponsored this year’s event.

PHOTO PROVIDED BY MARTHA SUMMA-CHADWICK

performance of Robert Schumann’s piano quartet in E flat, op. 47 was the focal work for the first half of the concert, which took place in the Roland Hayes concert hall on the UTC campus. The musicians were Dr. Martha Summa-Chadwick, piano; Mark Reneau, violin; Dr. Josh Holritz, viola; and Heather Smith, cello. This piece was composed in 1842 during Schumann’s “year of chamber music,” as his manic compositional drive focused solely on that genre. Schumann, who was afflicted with what would probably be diagnosed today as a severe form of bipolar disorder, wrote much of his music with the help of his imaginary alternate personalities, Florestan (passionate and outgoing) and Eusebius (dreamy and inward). Dr. Nikolasa Tejero, clarinet, joined the musicians on stage during the second half of the program in the lighter works by Paquito D’Rivera, Steve Reich, and Astor Piazzolla. These works demonstrated the effectiveness of music in encouraging the body to move with rhythm, making it difficult not to tap a finger or toe along with the music. For example, Reich turned clapping into music by using a strict canon pattern in one musical measure made up of twelve eighth notes. Dr. Tejero clapped in a fixed pattern while Dr. Summa-Chadwick moved out of unison by one beat at a time until the cycle was completed and they were back in unison. In an interview given early in his career, Reich confirmed that the piece was written to create a piece of music that would need no instruments beyond the human body. As with the previous annual concerts in the “Chamber Music for Body and Soul” series, works by a composer who had a neural affliction shared the program with forms of the dance and upbeat rhythms, giving the audience a broader view of the positive aesthetic and health benefits of music. The concert format was designed to entertain and also educate the audience about how music is a direct conduit to the brain and central nervous system. MTGIC

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Inclusion Works for Opportunity

Executive Director Dr. Martha Summa-Chadwick gave a pre-concert lecture, along with certified music therapist Katherine Goforth Elvard. The pair discussed the evidence-based science of music in the brain and offered examples of how this knowledge can be utilized therapeutically to help patients with motor, speech, and cognition challenges. The evening’s musical selections were also discussed to explain the reasons for choosing each work. In coordination with the concert, additional lectures have been presented regionally in an educational outreach component to all interested therapeutic, medical, educational, and family care organizations. Advocating both in the concert hall and directly in the medical community reaches many more individuals and organizations about the scientific and practical applications of music for health. Individuals with medical challenges such as autism, cerebral palsy, stroke, Parkinson’s disease and many other conditions can greatly benefit when rhythm and music are directed to the brain. The specific application of music and rhythm can redirect damaged neural networks to help improve a nonmusical behavior (such as gait, executive functioning, attention span, and speech) for better results in therapy and education. Dr. Summa-Chadwick also offers a solo piano lecture-concert, available on request, which is designed to educate listeners about music and the brain. “Tales of the Neural Tango” is a unique combination of concertizing, media, and lecture presentation in a program that is slightly over an hour in length. Audiences learn how the brain responds to music with a blend of discussion and experiential performance examples of classical and popular compositions. For more information about the concert series or any of MTGIC’s other projects, contact Dr. Summa-Chadwick at the MTGIC website (www.mtgic.org) or at her personal website (www.marthasumma.com). •

Inclusion Works for Business

National Disability Employment Awareness Month

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

dol.gov/odep

Inclusion Works for Innovation

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My wish for you and your child is that you get the information you need, the resources that can help, and the acceptance to be able to move forward with your lives following an autism diagnosis.

MY SON’S

AUTISM DIAGNOSIS BY KIMBERLEE RUTAN MCCAFFERTY

52 February 2018 • EP Magazine | EXCEPTIONAL PARENT

PHOTO PROVIDED BY KIMBERLEE RUTAN MCCAFFERTY

Over the years people have asked me about how and when Justin was diagnosed with autism. My boy got an official diagnosis at 17 months from a developmental pediatrician, received a spectrum diagnosis at a tender age that was very unusual back in 2004. I remember the pronouncement as being anti-climactic – as just a month before our son’s pediatrician had thrust a number of incomplete articles into my hands with the word “autism” prominently in the title, after which he subsequently almost shoved us out the door. up, that was a pretty good clue to what was going on with Justin right there. But the truth is my mother’s inner voice had been wondering about my son’s development since he was six months old. Sure, he met his milestones, and our pediatrician was not concerned about him at all. It was more his demeanor (constantly cranky), his fairly frequent projectile vomiting that just didn’t want to abate and, more important, there was the spinning. When he turned six months of age, the spinning became his favorite pastime. I really noticed it when Justin started sitting up, and instead of playing with his toys “correctly,” he would try desperately to rotate them across the floorboards of our home. I would watch him in deep concentration as he vacillated between putting everything in his mouth (which I expected him to do) and trying to make everything he touched a revolving missile. Still, he did enough “normal” things like babbling, making eye contact with us, and laughing at our antics that our pediatrician was content with his development for the first year of his life. It was only at 16 months when I brought him in for a second visit following his last 12-month check-up that our pediatrician “fessed up” that he had had concerns about Justin’s development since his one-year check-up, but hadn’t wanted to say anything in front of my husband, because “the fathers don’t take these things well.” I know. I couldn’t make this stuff up if I tried. I remember walking out of that 16month visit feeling hollowed out, numb, and terrified all at the same time. I was enraged that he’d had concerns and not said anything four months prior—after all, I had only come in because Justin’s reflux was worse, was he planning on waiting until

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his 18-month checkup to tell me? And, further still, would he have said anything if my husband had been there? To be fair, my husband had disclosed his slowness to talk at our one-year check-up, and perhaps our pediatrician was thinking “like father like son.” However, he should have said something after we outlined all our concerns, no matter how worried he was about how my husband would “take it.” I remember feeling we had lost four months to get the help our boy needed, even though I knew that being diagnosed so early would still be a help to him. Justin was our first child. Perhaps if I’d had a sibling to compare him to I would have pushed harder, but my experience with children was limited to the fourth graders I’d taught, not infants. Plus, my son was so “related” to us, loved to be held, had no issues looking his parents straight in the eyes. I didn’t know much about autism at that time. At first it was hard to believe our affectionate child who frequently connected with us had it. But he did, and he does. And I am grateful no matter how the divulgence came about, that we knew sooner rather than later. I’m writing this today because I know that somewhere out there is a mom or a dad who is concerned about their with an young child’s development, but scared too. My advice to anyone in this situation is to get a referral as soon as you can to a doctor at an autism clinic, or to a developmental pediatrician. The truth is it can take months to get an appointment (when we moved to New Jersey it took us six months to schedule one), months that your son or daughter could be receiving help from Early Intervention. Your child will have autism, or he or she won’t. It’s better to know and to gather the resources to help him or her. Intervening early is about the only thing the entire

autism community agrees upon when it comes to autistic kids. Try to take advantage of the resources available to you as early as you can. Plus, if your child is almost school age (three) it can take months for your district’s child study team to test and evaluate your son or daughter. Start the ball rolling as early as you can. We did, and I am convinced it made a huge difference in our son’s life. ow Justin is almost 15 and still on the severe end of the spectrum. He has his challenges, as I imagine all individuals on this end of the spectrum do. He uses a device to communicate, and will never live independently. That said, he could read at three, is one of the happiest people I know, and loves his life.He is our joy. My wish for you and your child is that you get the information you need, the resources that can help, and the acceptance to be able to move forward with your lives following an autism diagnosis. There may be times when you feel scared or overwhelmed. Reach out to family and friends, and use the Autism Speaks website as a resource, and consider visiting one of their Autism Treatment Network Centers. If your child needs the help, you will look back and be grateful you pushed forward, no matter how hard the initial steps were to take. In this new year, I wish all of you the best of luck and remind you to take care of yourselves too.

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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

EXCEPTIONAL PARENT | EP Magazine • February 2018 53

Mike Biggs

“My “My victory victory was was getting off the streets streets and making things right with my SD left him alone family.” family.” After After his military military ser service, vice, Mik Mike’s e’s struggle with PT PTSD ans of eevery ver y and homeless. T Today, oday, he he’s ’s a changed man. D DAV AV helps veter veterans DAV helps more more generation generation g get et tthe he benefits the they’ve y ’ ve eearned. arned. E Each ach yyear, ear, DAV ore vvictories ictories than one million veterans veterans in llife-changing i fe - c h a n g i n g w ways. ays. S Support upport m more for for veterans. veterans. Go to DAV.org. DAV.org.

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

56 HELPING PARENTS IN MILITARY FAMILIES DECREASE STRESS AND ANXIETY By Angela Shaw and Reanna Shaw PUZZLES & CAMO

61 NEVER FORGOTTEN By Shelly Huhtanen MILITARY LIFE

62 GIVING YOUR CHILD A HAPPY, HEALTHY START

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It’s all about putting the pieces together to build strong systems of support.

HELPING PARENTS IN MILITARY FAMILIES TO

DECREASE STRESS AND ANXIETY BY ANGELA SHAW AND REANNA SHAW

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three crowd or children with special needs. Therefore, behavior is often the primary communication device used to express the anxiety or worry that a child is feeling during times of family stress. In order to support children in coping with stress and anxiety, parents must be mindful about taking care of themselves, too. This can be accomplished through providing a balanced and healthy lifestyle, connecting with your personal support squad including friends and relatives, and being active in your community. Some great avenues toward self-care that will ultimately support you in your endeavor of providing the best possible life experiences for your children include:

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t the forefront of military life are anxietyproducing events that are often unpredictable, which typically translate as multiple moves and/or deployments. Change is hard on any family, but the changes sparked by military orders can alter the military family’s core lifestyle. Such alterations to the family way of life may cause an array bumps and hurdles ranging from a temporary change from co-parenting to sole-parenting when deployment arises. Connection to family or close friends can be severed when a PCS (permanent change of station) occurs, or a shift in cultural climate when a change of duty station from a metropolitan area to a rural outpost takes place. Whatever the unexpected situation, anxiety and stress are



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The implicit theme of the military family familiar foes to those who face a change in daily life activities. For spouses of service men and women, the whirlwind of is one that tackles challenges head-on, unpredictable demands caused by frequent TDAs (temporary thrives upon flexible thinking, and builds duty assignments), deployments, field time, and trainings, couresiliency and independence, but the military pled with ever-present worry and the unsettling dis-connect life is packed with more than perseverance from extended family and back-home friends can become significant factors that lead to a need to seek help to cope and adventure-filled moments. Though the overwhelming feelings associated with the ING ST with G the military life is a fulfilling and stress and anxiety. However, it is often difficult for A children in families facing the toxicity of exciting one, it is also a life that is stress to verbalize their anxiety or worry in a in a constant state of flux. conventional manner, especially the zero to

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Support groups Special needs web sites Military family web sites Your installation’s Morale, Welfare and Recreation program Exercise groups Special interest clubs or organizations Community events Your child’s school events Local high school, college, or community theater and music program performances Children will find joy and fulfillment through play, laughter, and connection to supportive and understanding people in their lives. Foster a strong sense of family connection through fun activities and a shared purpose. Local activities within the community, shared with parent or parents, can lend a sense of connection to your child. Going to the Back-to-School night or the special after school events, such as Running Club or Computer Club, affords your child a connection and place within his or her learning community. Kids can connect with others, through local events. They will experience, first hand, the authentic parent/child model of others, rather than their idealized version of that situation. Check out the nearby college, community library, or local recreation and park district sites to discover the treasure trove of local events available for free or at a low cost. Check in with your military center or ask the school counselor if groups are available for children of

deployed parents, in order to afford the connectivity and support of other kids in similar situations. Create your own special events and family customs to maintain family routines that provide consistency, as well as provide for relaxation, engagement, and connection throughout all your PCS adventures. The following list offers some ideas to spark your own design:

FAMILY NIGHTS OR DAYS Create a special night or day of the week that you carve out just for Family Time. Turn off the technology and be present as a family. An hour or two of board games, puzzles, kite flying or, perhaps, cooking or crafting together will help build your child’s social interaction skills, attention and focus, and motor planning, in addition to providing connection and honor of the family. Check out kid or family magazines for ideas. Highlights Magazine for Kids at https://www.highlights.com/ often provides great crafting and cooking ideas that are kid friendly. Gather as a group to read or listen to a story. Reading fiction together and discussing the nonverbal cues that communicate emotions helps children to grow emotionally through increased Theory of Mind (ToM), gaining empathy, and discovery of self.

PLAYS TOGETHER: Children will find joy and fulfillment through play, laughter, and connection to supportive and understanding people in their lives.

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GOOD TO GROW: Tori and Jacob, the two youngest of a retired Army dad, enjoy the fruits of their labor and the joy of family gardening projects at their various PCS destinations. There is always room for raspberries even within existing landscape of the front yard, and from the small raised beds within a stretch of the backyard, the family garden provides many of the fresh veggies for their dinnertime salads.

GARDENING Unplug yourself and your kids through gardening at each new PCS home. In addition to making healthy eating fun for kids, the heavy work of digging, raking, and pushing a wheelbarrow supports the sensorial needs of our students with sensory processing needs. Try planting a small raised bed or growing a few edibles within the existing landscape of the new yard. Perhaps, if outdoor space is limited at your new home, grow some herbs in your kitchen window or within small containers on a sunny porch. Tower gardens are trendy vertical gardens that offer space saving benefits, as well as responsibility and step following opportunities. A leaning trellis will allow beans or other edible vines like grapes or kiwi to climb and grow. A themed garden, such as a salsa garden or a butterfly garden can be fun and encourage connection to family, neighborhood friends, and the outdoors. In addition to the benefits of family connection through tradition building, gardening inspires one to take ownership of their environment, both dependably and emotionally. Moods and anxiety are lightened through relaxing, observing, and nurturing plants and flowers. Self-esteem is increased through positive experiences of exploration and discovery. Peruse the web or visit the library or garden store together, to share and explore garden ideas. Check out websites like https://kidsgardening.org to get some great ideas planted.

YOGA In addition to providing physical benefits of exercise, stretching, coordination, and motor planning, the practice of yoga for children with autism and other special needs encourages and teaches children coping skills and how to respond to stress, 58 February 2018 • EP Magazine | EXCEPTIONAL PARENT

tension, worry, and anxiety. Teaching children specific breathing strategies and yoga poses supports them in reducing anxiety, releasing difficult emotions and tension in the body; therefore, paves the way for calmer, more peaceful and healthier lives. Further, yoga facilitates self-awareness which is particularly instrumental in helping kids with autism or other learning disabilities to learn selfregulation through becoming aware of their bodies and breathing connection. Yoga can be practiced with parents, increasing the calm within the adult as well. Yoga stories are a powerful way to provide calming or courage building yoga sequences for children through a playful and engaging platform. Through storytelling activities, the brain’s emotional region is activated and supports elements of Theory of Mind and empathy. Bookstores and libraries may have some great yoga kid books or check out websites, such as www.kidsyogastories.com for some tantalizing ideas. avigate the websites provided below to begin your journey toward discovery and inspiration as you put together the pieces that will encourage and build the strong systems of support for your children and decrease stress and anxiety within your family’s hearts and lives.

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HIGHLIGHTS www.highlights.com A mainstay in the kids’ magazine trade. Highlights magazine group offers an array of ages from infancy to the brink of the coming of age many hours of fun, beyond the magazine. Their website includes ideas, parenting tips, lists, activities, crafts, PHOTOS PROVIDED BY ANGELA AND REANNA SHAW

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A PRE-WRITING SIX STEP

YOGA FLOW

TO WARM UP AND RELAX

1A Inhale to flex your palms forward away from your body as you point your fingers upward. 1B Then, exhale to flex your palms backward toward your body as you point your fingers downward. AFFIRMATION: My wrists are flexible and strong.

DESIGNED BY REANNA SHAW Yoga provides life-long benefits to children with special needs, to include gaining greater awareness and understanding of the body, learning to selfregulate and development of emotional intelligence relative to coping, empathy, and Theory of Mind (ToM) skills. In addition to supporting our children with special needs, yoga creates mindful relaxation and calming strategies that will support adult caregivers and parents. Yoga helps create a mind-body connection, as you begin to link your movement with your breath, reports Reanna Shaw, a yoga instructor certified to work with children and adults. Reanna notes, “Yoga can be calming and improve your ability to focus, while also strengthening your body and increasing flexibility in your body.” At right is a warm-up for writing or keyboarding designed by Reanna Shaw, to support parents and kids at home in preparation for homework. This flow serves to warm up the joints and muscles connected to writing or keyboarding, as well as calming the system in preparation for the demands of the upcoming task. Also, it is a fantastic support for parents as they prepare for their own daily tasks on the computer. When doing this with your child focus upon engagement and affirmation, rather than form. As you present each pose, state the instruction aloud so children can follow along. Then state the affirmation and ask your child to repeat it.

PHOTOS PROVIDED BY ANGELA AND REANNA SHAW

2A Inhale to flex your palms toward your body as you point your fingers inward. 2B Then, exhale to flex your palms away from your body as you point your fingers outward. AFFIRMATION: My hands and fingers are ready to work.

3A Inhale to open your heart to learning, open your throat to language, and flip your palms upward to knowledge. 3B Exhale to honor yourself with a hug and feel expansion across your upper back. AFFIRMATION: My proud heart is open for learning.

4A As you sit tall, inhale to extend your arm upward and exhale to reach your arm over and above your head. Feel the side of your torso lengthen. 4B Switch sides and repeat the steps. AFFIRMATION: My whole body is open and ready for learning.

5A Inhale, open your arms wide (like the letter T). Then tuck your thumbs in behind your other fingers as you make fists with your hands. 5B Exhale to rotate your fists downward and backward. AFFIRMATION: My entire body is ready to grasp and embrace learning.

REVERSED NAMASTE & NAMASTE: At our core we are the same. 1A Inhale to flex the tops of your hands to meet at your heart’s center with your fingers pointing downward. 1B Exhale to bring your palms together at your heart’s center with your fingers pointing upward. AFFIRMATION: I honor myself as I learn and I honor others who support my learning. READY AND BEGIN AFFIRMATION: I am ready to begin my learning journey.

EXCEPTIONAL PARENT | EP Magazine • January 2018 59

U.S. MILITARY H games, recipe how-to’s and more to encourage and support kids to bond together as a family and celebrate the big or small everyday events in their lives. Their motto is “Fun with a Purpose™”, in order to help children become their best selves.

KIDSGARDENING https://kidsgardening.org Explore archived editions of KidsGarden News or subscribe to their monthly e-newsletter that offers thematic lesson plans, activity ideas, seasonal gardening tips, and more. KidsGardening is a national nonprofit that has led the school gardening movement for 35 years. Their message tells it all: “We create opportunities for kids to learn through gardening, engaging their natural curiosity and wonder by providing inspiration, community know-how and resources.” In addition to the newsletter, you will find links to educator resources complete with webinars, gardening activities, books, and other great supports. The gardening toolbox link provides gardening basics, activities, and growing guide. I love the colorful and informational blog spot. Tractor over to the website and dig in.

KIDS YOGA STORIES www.kidsyogastories.com Giselle Shardlow is the author of Kids Yoga Stories. Her yoga books for kids get children learning, moving, and having fun. Giselle draws from her experiences as a teacher, traveler, yogi, and mom to write the yoga stories found at www.kidsyogastories.com/store or on Amazon (amazon.com/author/giselleshardlow) worldwide. The purpose of her yoga books is to foster happy, healthy, and globally educated children. She lives in Boston with her husband and daughter. In addition to presentation of opportunities to buy her merchandise to support yoga storytelling, Giselle offers a newsletter to provide free updates about kid yoga ideas, articles about parenting, yoga, travel and books, as well as helpful yoga updates, news about books and giveaways.

MILITARY.COM wwwmilitary.com The website shares that they are the largest online military and veteran membership organization with 10 million members strong. The free membership connects service members, military families and veterans to all the benefits of service. Within the site there is a plethora of information with regard to supporting families of the military. Of particular interest is The Emotional Cycle of Deployment: A Military Family Perspective which can be accessed through the following link: https://www.military.com/spouse/military-deployment/dealingwith-deployment . A multitude of other topics exist within the website that endeavor to support and provide social/emotional resource to the military family, as well as other military life events and situations, education, health, and home owner and real estate benefits, military discounts as well as hot-topic news stories. 60 February 2018 • EP Magazine | EXCEPTIONAL PARENT

SESAME STREET FOR MILITARY FAMILIES http://sesamestreetformilitaryfamilies.org This is a free website where families can find an array of information and multimedia resources on topics ranging from deployments, homecomings, injuries, grief, and self-expression. The website is bilingual (English and Spanish) and provides a critical outreach tool to support military families and their young children cope with the challenges of deployment and build resiliency in times of separation and change. A link specific to Sesame Street for Parents is available at www.sesamestreet.org/parents/topicsandactivities/toolkits/tlc

ZERO TO THREE www.zerotothree.org/our-work/military-family-projects Supports military families in an endeavor to increase awareness and collaboration throughout the military community in support of parents and professionals to increase effectiveness in the care of very young children and their families. Within the website, families and professionals have access to an array of information to include a series to build the resilience of young children and their families through the specialized lens of the military family. In addition to developmental topics of ages and stages, Zero to Three provides topics relative to Early Intervention, which is a provision of the federal legislation of the Individuals with Disabilities Education Act (IDEA), under “Child Find” (U.S. Dept. of Education, 2011). The “Over There” Activity Book, available within the website, provides a helpful support for children on the autism spectrum who experience difficulty with theory of mind and social understanding. Of particular interest relative to the topic of stress is their on-line series Supporting Young Children, which provides a collection of brochures focused upon the unique military family experience of parenting a baby or toddler, during times of stress or separation. Additionally, there are a number of resources specific to a wide variety of stress inducing topics that arise within the military family. • ABOUT THE AUTHORS: Angela Shaw is a special educator who synthesizes her diverse education and experience to collaborate with families and staff, in order to promote success and encourage the students in her care to be life-long learners. Her publishing focus is upon special education topics. Shaw’s son-in-law is an active duty U.S. Coast Guard. Shaw and her husband spend much of their free time adventuring to various PCS locations and enjoying every possible minute with their son-in-law, daughter, and baby grandson. Reanna Shaw is a yoga instructor, who teaches yoga to both children and adults, in her third PCS location. She enjoys teaching mindfulness through movement. Reanna is the wife of an active duty U.S. Coast Guard and enjoys sharing her knowledge of yoga with other Coast Guard service members and their families. Since attending college, she has also graduated from Spira (breath) Power Yoga, a Washington state licensed private yoga career school. Reanna is certified to teach yoga to children and adults. Her newest yoga student is her 10-month-old son. Discover more about what Reanna has to share relative to the practice of yoga by searching on Facebook for @reannafityoga.

PUZZLES & CAMO

SHELLY HUHTANEN

Never Forgotten Gram passed away Christmas morning. She was 101 years old. She was born in 1916, when people with disabilities were probably never discussed in public forums and the concept of inclusiveness wasn’t possible.

I remember it like it was yesterday. Mark and I visited his Gram, Dorothy, in Montana because we didn’t know how much longer she would be with us. She was almost 100 years old, living alone and waiting to eventually see her husband again since his passing, almost 40 years earlier. She no longer drove and looked forward to visitors for stimulating conversation. Her small condo was still spotless and without clutter. Everything in her house was in its proper place. Mark was her only grandson so I knew that us visiting would mean a lot to her. With Broden having a difficult time flying, my parents came to our house to take care of the boys to ensure that Mark and Gram could spend some time together. As we handed her pictures of our boys after arriving, she started to cry. Gram’s eyes fixated on the picture of Hayden standing tall. He was growing so fast and was no longer a little boy, but embarking on the teenage years. She looked at Broden’s picture and seemed to cry a little harder. “I worry about Broden. I worry so much about him all the time. Is he going to be cared for and will he be safe?” I found myself assuring her that Broden would be fine even though, deep down, I had the same fears. As I put my hand on her shoulder while she was sitting at the table, I reassured her that Mark and I would make sure he would be okay. I don’t know if that alleviated any of her anxiety, but it couldn’t hurt to try. When we left that day, Mark and I came to the realization that that may be the last time he would lay his eyes on his Gram. They were fairly close when Mark was growing up and he made a point to call her every week. We would always joke with how the conversations usually went on that Sunday afternoon. She would ask about the boys, tell him the

weather report, and then explain to him how productive she was that day. I would overhear him saying to her, “Gram, you are 100 years old. You should be sitting on the couch relaxing. Don’t worry about your chores. Just take it easy.” She never thought days should be spent without accomplishing something.

ACTS OF LOVE: Mark always accepted what Gram gave Broden because he knew this was her way of showing that she loved him unconditionally and wanted the best for him. Gram passed away Christmas morning. She was 101 years old. She was born in 1916, when people with disabilities were probably never discussed in public forums and the concept of inclusiveness wasn’t possible. When Gram found out that her great grandson had autism, I never felt judgment from her or that she saw Broden as less than his typical brother. Mark would just tell me that she would ask how she could help. For quite some time, she would send us money every month and in the subject line of the check, it would say “For Broden”. When Broden went to a private school, she would send checks in the mail to help with the cost. As she got older, her hand-

writing was less legible and her cards that went with the checks had less writing in them. Mark always accepted what she gave Broden and didn’t try to decline her checks because he knew this was her way of providing for Broden. It was her way of showing that she loved him unconditionally and wanted the best for him. Even though she only saw him once, we know she thought about him and still remembered to ask how he was until she was no longer able to speak while in the hospital. I still remember the awkward conversation Mark and I had in the kitchen when Gram realized that her time with us was dwindling. She was revisiting her will and testament and making sure everything was just the way she wanted it. Looking back, that was Gram. No stone would be left unturned and not one question would be left unanswered based on what she wanted to go to whom. She remembered all of her great grandchildren in her will and was adamant about Mark’s father carrying out her wishes. If only I could live as long as her and have a fraction of the insight she had at 100 years old. She’s no longer with us, but I’m certain my children gained another guardian angel this Christmas. Mark’s parents sent us her obituary. She asked that donations be sent to Autism Speaks, one last act of love towards her special needs great grandson and to the autism community. •

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.

EXCEPTIONAL PARENT | EP Magazine • February 2018 61

MILITARY LIFE

GIVING YOUR CHILD A HAPPY, HEALTHY START

Every mother and father wants to raise a happy, healthy, well-adjusted child. Service members are no exception. Since most healthy behaviors are developed in childhood, you can help your child get off to a good start with good habits, actions and choices to promote health and happiness. Here are some ways to help your kids get healthy and happy. START WITH NUTRITION Health and happiness begins with good nutrition. Healthy foods provide the building blocks for a healthy body and can even help us fight disease. As a parent, help your child develop healthy eating habits as early as possible. 5210 Healthy Military Children is a program for military children and families. For good nutrition, the program suggests: • Eating five or more servings of fruits and vegetables a day • Avoiding all sweetened beverages and limit juice. Do not give juice to infants under 6 months. Encouraging your child to eat and drink: • fat-free or low-fat dairy products • whole grains like whole-wheat bread and brown rice • lean protein, such as eggs, poultry, unsalted nuts and seeds. 62 February 2018 • EP Magazine | EXCEPTIONAL PARENT

Breakfast is especially important for children. Hungry kids tend to have shorter attention spans and can have difficulty with problem solving, math skills and memory recall.

ENCOURAGE PHYSICAL ACTIVITY The 5210 program also suggests children should have: • 2 or fewer hours of recreational screen time a day • 1 or more hours of physical activity every day Exercise for your young one can include school recess periods, hiking, playing sports, or walking to and from school. Being physically active and playing with your child is a wonderful opportunity to get exercise while being together. Here are more resources for activities for your child: • Morale, Welfare and Recreation facilities. Find local activities on your installation • Installation youth centers. Locate a safe, kid-oriented environment • Boys & Girls Club of America Military Partnership. These clubs offer lots of great activities for military kids both on and off installation.

PROMOTE GOOD SLEEP HABITS Sleep is critical to good health. According to the National Institute of Heath, sleep is involved in the healing and repair of your heart and blood vessels, and chronic sleep deficiency is linked to an increased risk of disease. For better sleep habits:

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LEARN HOW TO COMMUNICATE Talking to your children — even from infancy — is one of the most important parts of parenting. The way your child communicates will change substantially between birth and the age of five. Knowing what to expect can help you understand and respond to your child in meaningful ways. The Zero to Three program has lots of parenting tips on many subjects including communicating. Staying in touch and communicating well remain vital as your children grow up. Check out our articles and resources

in Parenting on Military OneSource for more ways to connect with your kids.

TAKE ADVANTAGE OF SUPPORT It truly “takes a village” to raise a healthy, happy child. As a service member, you have access to a host of tools and programs to help you along. On Military OneSource, you’ll find articles and resources with information and tips on raising children. You can also contact our Military OneSource specialty consultants for help with challenges like education, adoption and special needs. Call 800342-9647. OCONUS/International? Click here for calling options: http://www.militaryonesource.mil/international-calling-options

OTHER DEPARTMENT OF DEFENSE RESOURCES The New Parent Support Program provides supportive home visits to expectant parents and parents of young children. For more information, contact your local Military and Family Support Center or

Family Advocacy Program. Find your local contact information for New Parent Support at MilitaryINSTALLATIONS. 4-H Military Partnerships bring the resources of the Land Grant Universities to the youth programs of the military. Military youth can join 4-H clubs in their community, and they can also participate in summer camps around the country. Boys and Girls Clubs: Mission Youth Outreach links military families with the Boys & Girls Clubs of America in communities around the country for kids who may not live near installation services. The Pregnancy and New Parent Knowledge Management Program allows you to sign up to receive pregnancy, parenting and breastfeeding digital education on a regular basis. Raising happy, healthy children demands dedication – but there’s no more rewarding job. Learn all you can and take advantage of the resources around you to get your military kid off to a great start. – Military One Source

SHE FOUGHT FOR HER COUNTRY. IT’S OUR DUTY TO FIGHT FOR HER. Wounded Warrior Project® long-term support programs provide these brave men and women whatever they need to continue their fight for independence. At no cost. For life. Help us help more of these warriors in their new life-long

©2015 WOUNDED WARRIOR PROJECT, INC. ALL RIGHTS RESERVED.

• Have a consistent bedtime and wakeup time, even on the weekends • Plan an hour of quiet time before bed • Develop bedtime rituals • Make sure the bedroom is comfortable and is a positive environment. If you have an infant or toddler, there are things you can do to help your young child develop healthy sleep habits. The program ZERO to THREE has lots of advice and tips for sleep.

battle. Find out what you can do at findWWP.org.

ANGIE HAHN, WOUNDED VETERAN

EXCEPTIONAL PARENT | EP Magazine • February 2018 63

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