PLUS: United StateS Military Section
9
FEBRUARY 2016
INSIDE:
STRESS MANAGEMENT TECHNIQUES FOR SPECIAL NEEDS PARENTS AND:
EP’S ANNUAL ISSUE:
MAKING HEART-HEALTHY FOOD CHOICES
DEPRESSION IN ACTIVE DUTY SERVICE MEMBERS
DIET AND NUTRITION PLUS: GENETIC ALLIANCE
AN ACADEM Y RIC
E
N T I S T RY
Endorsed & AL ME DICI NE
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DEV ELO PM
NT
OF
AM E
THE GENETIC DIET
Promoting
healthy futures one child at a time.
Promoting a healthy future for your child begins with Barnabas Health. Our network of pediatricians and pediatric subspecialists treat more children than any other system in New Jersey.
Clara Maass Medical Center • Community Medical Center • Jersey City Medical Center Monmouth Medical Center • Monmouth Medical Center, Southern Campus • Newark Beth Israel Medical Center Saint Barnabas Medical Center • Children’s Hospital of New Jersey at Newark Beth Israel Medical Center The Unterberg Children’s Hospital at Monmouth Medical Center • Barnabas Health Ambulatory Care Center Barnabas Health Behavioral Health Network • Barnabas Health Home Care and Hospice Barnabas Health Medical Group • Barnabas Health Outpatient Centers
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CONTENTS
FEBRUARY 2016 VOLUME 46 ISSUE 2
DIET AND
NUTRITION HEALTHY CHOCES, HEALTHY LIFESTYLE
18 HOW TO MAKE HEARTHEALTHY FOOD CHOICES By Barbara B. Mintz, MS, RD GENETIC ALLIANCE
20 THE GENETIC DIET By Adrianna Evans
22 COMING TOGETHER THROUGH COOKING AND LEARNING By Gina Frisina M.S.E.D and Amy Colvin
34 24
COVER STORY
24 COMMUNICATION: THE SOCIAL “NUTRITION” BEHIND HEALTHY KIDS WITH SPECIAL NEEDS By Karen Kabaki-Sisto, M.S. CCC-SLP
ENT•
M
S
S
SSION A RE
ND
• STRE
DE P
FEATURES
MA N AGE
30 NINE STRESS MANAGEMENT TECHNIQUES FOR SPECIAL NEEDS PARENTS By Deanna Picon
PART V
40 A GPS FOR FAMILIES OF PEOPLE WITH SPECIAL NEEDS By Lauren Agoratus PART III OF A SERIES
46 STIGMA AND HEALTH CONDITIONS By Cheryle B. Gartley with Mary Radtke Klein
30
PART II
34 SHE MADE IT!
By Christine Redman-Waldeyer
38 BULLYING AND CYBERBULLYING
42 THE DIRECT SUPPORT WORKFORCE CRISIS: A PARENT’S PERSPECTIVE By Gail Frizzell
By John Spoede, PH.D., LPC-S, LCDC, NCC, CSC and Dianne Reed, Ed.D. ON OUR COVER Some children with special needs may view good health and fitness habits as tedious tasks that are forced upon them. EP magazine suggests that the right types of communication and social interaction can help parents foster healthy lifestyles that have long-lasting benefits. Section starts on page 18.
42 eparent.com | EP MAGAZINE • February 2016 1
CONTENTS
FEBRUARY 2016 VOLUME 46 ISSUE 2
DEPARTMENTS ANCORA IMPARO
4
A MEMORABLE PLACE TO LIVE By Rick Rader, MD
6
NEW PRODUCTS SIBLING TIES
8
GUARDIANSHIP By Paige Talhelm NOMINATION FORM
9
2016 TEACHER OF THE YEAR ABC: ALL BEHAVIOR COUNTS
10 A DAY IN THE LIFE OF A BOARD CERTIFIED BEHAVIOR ANALYST, PART 1 By Robert K. Ross ED.D., BCBA-D, LBA
A NEW COL UM FOR N EP!
8
14 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
12 WHAT’S HAPPENING AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE AND DENTISTRY
14 ASIAN CHILDREN WITH AUTISM AND OTHER DISABILITIES IN ASIA AND THE U.S. By H. Barry Waldman DDS, MPH, PHD, Allen Wong DDS, EDD Steven P. Perlman DDS, MSCD, DHL (Hon), and Misha Garey, DDS
62 PRODUCTS & SERVICES
54 DEPRESSION IN ACTIVE DUTY SERVICE MEMBERS AND THEIR FAMILIES By Jennifer Woodworth, PSY.D
MILITARY SECTION 54 DEPRESSION IN ACTIVE DUTY SERVICE MEMBERS AND THEIR FAMILIES By Jennifer Woodworth, PSY.D. MILITARY NEWS
58 CHILDREN OF FALLEN PATRIOTS FOUNDATION CONTINUES TO EXPAND IN THE NEW YEAR
MILITARY NEWS
58 CHILDREN OF FALLEN PATRIOTS FOUNDATION CONTINUES TO EXPAND IN THE NEW YEAR MILITARY LIFE
60 UNDERSTANDING ACCESSIBLE HOUSING: THE FAIR HOUSING ACT PUZZLES & CAMO
61 COME FLY WITH ME By Shelly L. Huhtanen
MILITARY LIFE
60 UNDERSTANDING ACCESSIBLE HOUSING: THE FAIR HOUSING ACT PUZZLES & CAMO
61 COME FLY WITH ME By Shelly L. Huhtanen 2 February 2016 • EP MAGAZINE | eparent.com
The contents of EP magazine’s Military Section are not necessarily the official views of, or endorsed by, the United States Government, the Department of Defense, or the Department of the Army. The appearance of advertising adjacent to the Military Section does not constitute endorsement by the United States Government, the Department of Defense, or the Department of the Army of the products or services advertised.
Information and Support for the Special Needs Community
VOLUME 46 ISSUE 2 Editor-In-Chief
■
ESTABLISHED 1971 Rick Rader, MD
Contributing Writer/Editor
Vanessa B. Ira
President, CEO & Publisher
Joseph M. Valenzano, Jr.
Production, Ad Traffic Manager Human Resources Manager Director of Circulation & Business Development Art Direction & Design Resource Guide Specialist Information Technology Expert
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Exceptional Parent (ISSN 0046-9157) is published monthly 11 times per year plus the special January Annual Resource Guide by ep World, Inc., dba Exceptional Parent Magazine, 6 Pickwick Lane, Woodcliff Lake, NJ 07677. Internet address: http://www.eparent.com. Digital access: www.eparentdigital.com. All rights reserved. Copyright ©2016 by ep World, Inc. Exceptional Parent™ is a registered trademark of ep World, Inc. Postmaster: Please send address changes to: Exceptional Parent, 6 Pickwick Lane, Woodcliff Lake, NJ 07677. Any applicable periodical postage paid at Johnstown, PA and additional mailing offices (USPS 557-810). Basic annual subscription rate is $19.95 per year for EP Digital. Annual subscription rate for Canada is also $19.95 (U.S. funds only); all other foreign countries $24.95 (U.S. funds only). Subscriber Service: Direct all inquiries & address changes to: Exceptional Parent, 6 Pickwick Lane, Woodcliff Lake, NJ 07677. Customer Service/New Orders: E-mail:
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EP EDITORIAL ADVISORY BOARD Lauren Agoratus Parent, NJ state and MCH Region II (NJ, NY, PR, VI) Coordinator for Family Voices, NJ CCAN (Caregiver Community Action Network), National Family Caregivers Association, Mercerville, NJ
Saadi Ghatan, MD Assistant Prof. of Neurological Surgery, Division of Pediatric Neurological Surgery, Columbia College of Physicians and Surgeons, Columbia Medical School, New York, NY
Gary Liguori Fellow of the American College of Sports Medicine (ACSM); Department Head of Health and Human Performance, University of Tennessee Chattanooga, Chattanooga, TN
Mark L. Batshaw, MD Prof. and Chairman, Dept. of Pediatrics, The George Washington Univ. Medical Center, Washington, DC
Joan Earle Hahn, DNSc, RN, CS, CDDN Assistant Adjunct Prof., Univ. of California, Los Angeles School of Nursing; Past President, Developmental Disabilities Nurses Association
Patricia E. McGoldrick, CPNP Pediatric Neurology & Epilepsy, Associate Director, Developmental Disability Center, Roosevelt Hospital, NY
Mahlon Delong, MD Chair, Dept. of Neurology, Emory Univ., Atlanta, GA
Jerry Hulick, GA Emeritus Massachusetts Mutual Life insurance Company, Special Care Planning Mary M. Keller, ED.D President and CEO, Military Child Education Coalition, Harker Heights, TX Bernard A. Krooks, ESQ Littman Krooks LLP, New York, NY
Howard Shane, PhD Director, Communications Enhancement Center, Children’s Hospital, Boston, MA
Frank J. Murphy President and CEO, EP Foundation for Education, Atlanta, GA
Jo Waldron President and Co-founder of the Able Kids Foundation and Partner at Brain Basket, LLC, Fort Collins, CO
Kathryn O’Hara, RN Epilepsy Nurse Clinician, Nurse Manager Child Neurology, Division of Child Neurology, Virginia Commonwealth University, Richmond, VA John M. Pellock, MD Prof. and Chair, Division of Child Neurology, Virginia Commonwealth Univ., Vice President of the American Epilepsy Society (AES)
Steven M. Wolf, MD Director of Pediatric Epilepsy at Beth Israel Medical Center, New York, NY; Director of Pediatric Neurology at St. Lukes Roosevelt Medical Center, New York, NY
AN ACADEM Y RIC OF
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EP magazine neither endorses nor guarantees any of the products or services advertised in the magazine. We strongly recommend that readers thoroughly investigate the companies and products being considered for purchase, and, where appropriate, we encourage them to consult a physician or other credentialed health professional before use and purchase.
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Note from the Editor-in-chief: EP World, Inc. advocates for the dignity of all citizens with disabilities including the use of “people first language” where possible. We do not normally edit articles and submissions that do not reflect this language, therefore, at times, readers might see alternative nomenclature. — Rick Rader, MD
Barbara Mintz MS, RD Vice President of Healthy Living & Community Engagement, Barnabas Health, West Orange, NJ
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Henry G. Chambers, MD Pediatric Orthopedic Surgeon, Rady Children's Hospital; Prof. of Clinical Orthopedic Surgery, Univ. of California, San Diego
Matthew Holder, MD President of the American Academy of Developmental Medicine & Dentistry; Global Medical Advisor for Special Olympics International, Louisville, KY
Robert K. Ross Ed.D., BCBA-D, LBA President of the Autism Special Interest Group, Association for Behavior Analysis International, Senior VP at Beacon ABA Services of MA & CT
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Ronald G. Blankenbaker, MD Univ. of Tennessee Health Science Center, Chattanooga, TN; President, American Association on Health and Disability
Steven P. Perlman, DDS, MScD, DHL (Hon) Clinical Prof., Boston University, School of Dentistry, Boston, MA
eparent.com | EP MAGAZINE • February 2016 3
ANCORA IMPARO
RICK RADER, MD
■
EDITOR-IN-CHIEF
A Memorable Place to Live The leading cause of Alzheimer’s disease and related dementias is aging. And that applies to all of us.
It had to happen. It’s been in the cards all along. We’re getting older. And it now applies to all of us. The “all of us” applies to individuals with intellectual and developmental disabilities who had historically been relegated to shorter lifespans. And while that deserves the celebratory release of the white doves, there is another side to that achievement. The leading cause of Alzheimer’s disease and related dementias is aging. And that applies to all of us. For those of us working in the field of developmental disabilities (from front line direct care staff to neurologists) we see it every day. Our friends, our patients, the people we support, are experiencing the ravages of these degenerative diseases. There is an interesting aside to this phenomenon and that is how we “neuro-typicals” can relate, empathize and experience these changes in both those we support at work, and those we are growing to expect to support in our own families (and selves). It has become the singular level playing field. It is best known for its “memory robbing” manifestations, although the disease has many other game- changing arrows in its quiver. Mark Twain’s genius provides us with this observation: “When I was younger, I could remember anything, whether it had happened or not; but my faculties are decaying now and soon I shall be so I cannot remember any but the things that never happened. It is sad to go to pieces like this but we all have to do it.” The field has not stood idly by as sheer observers of the torment that dementia provides. There have been multiple positive and promising programs aimed at learning how to better support individuals with intellectual and developmental disabilities and dementia. The National Task Group on Intellectual Disabilities and Dementia Practices, cofounded by Drs. Matthew P. Janicki and Seth Keller, have lead the way in creating a national movement dedicated to enlisting 4 February 2016 • EP MAGAZINE | eparent.com
researchers, academics, clinicians, policy makers, families, payors—and most importantly, the “trench-based direct support professionals”— in creating, identifying, evaluating and promoting the best practices. The National Institutes of Health (NIH), in cooperation with the Administration for Community Living, creates and sponsors ongoing webinars addressing the key issues of ID and Dementia. The International Association for the Scientific Study of Intellectual and
With that as background for the ongoing efforts at identifying best practices, there is a “pearl” that is available for “prime time.” Last year, the Special Hope Foundation (www.specialhope.org), a funder dedicated to supporting innovative healthcare projects for the ID/DD community awarded a grant for the purpose of ascertaining the efficacy of how “telemedicine” could assist community providers with expert distant consultation in supporting
WORLD CLASS: James (left) with Kevin. James has been working with individuals with a dual diagnosis, and has been assigned to our most complex and challenging individuals. Developmental Disabilities is the global body that is promoting work in this area. Virtually every one of the Down syndrome associations has pulled out all the stops in working and contributing to this area as individuals with Down syndrome share an increased risk for developing Alzheimer’s disease. Even the Special Olympics (best known for their optics of dedicated athletes crossing the finish line with determined expressions) has begun to look at dementia as an influencer in the careers of their aging athletes.
individuals with intellectual disabilities and dementia. While the program is still ongoing, one component of the project has already bore fruit. The team (internally known as the Dementia DOGS; for Dementia Options, Guidance and Strategies) sent two of its members to the Orange Grove Center (where I have the pleasure of working) to form and cement a “face to face” working relationship (one of the “lessons learned” from the grant) with our dementia team. Dr.
WHAT’S HAPPENING
Lucy Esralew, a neuro-psychologist and Kathryn Pears, a noted trainer in dementia practices and protocols, came to Chattanooga to research the best methodologies for an effective “telemedicine” consult. Patti Wade, the Orange Grove point person for dementia care, suggested that Dr. Esralew should interview one of our direct support professionals (DSP) assigned to support an individual with a high suspicion of entering the early stages of dementia. The “pearl” was a result (“gift” would be a better word) of Lucy’s interview with the DSP. James Massengale has been a direct support professional for five years. While working as a full time DSP, he has also attended college in his pursuit of earning a degree in education. James is one of those rare individuals who has a natural affinity in understanding the unspoken needs of people. This gift, coupled with the mentoring of Patti, has produced what I believe could be the poster boy for supporting individuals with dementia. His strengths have been in working with individuals with a dual diagnosis (intellectual disability and mental illness) and as a result he has been assigned to our most complex and challenging individuals. Currently he is supporting Kevin Gibson, an individual with Down syndrome and behavior that suggests early signs of Alzheimer’s disease. Lucy sat down to speak to James in the pursuit of better understanding the informational, technical, emotional and behavioral needs of both the individual and the DSP. Lucy is that rare clinician that recognizes that the “dementia care equation” has multiple moving parts. After a fruitful exchange of Lucy pursuing James’ ideology and vision of what constitutes collaborative and comprehensive dementia care (including resources, boundaries, decision making, autonomy, ongoing reality checks, benchmarks, environment, communicating with family, colleagues, and friends and the all-important issue of non-negotiables), Lucy took a sip of coffee and said to James, “If you could boil down
the most effective ‘mind-set’ for successfully supporting an individual with dementia, what would that be?” James thought for a moment and delivered what I consider to be one of the most significant insights relating to the art and science of dementia care. “That’s simple, Dr. Esralew, I live in his world.” “I live in his world,” is indeed the enchilada statement about supporting people with dementia. Throw in all the phrases that relate to the words of a change agent, “aha moment,” “eureka,” “luminous,” “refulgent,” “lucent,” James’ words gave flight to all the “high fives” that caregivers provide for each other. Lucy had managed to extract from James a “living blueprint” for the successful support of individuals earmarked by dementia. While the legions of professionals continue to explore best practices, we have been provided a cornerstone, a foundation, and a “north star” to build on. And from what I learn from Charles, Patti, Lucy and Kathryn and their peers everywhere, every day, “living in his world” (for a period of time) can possibly be the most memorable place to learn to live better in our “own world.” (With special thanks to The Dementia Dogs “TeleMentoring” Team: Dr. Seth Keller, Dr. Lucy Esralew, Kathy Service, Kathryn Pears, Dr. Phil McCallion, Shan Raju and Dr. Rick Rader; also Patti Wade, AmyJo Schamens, Melissa McNish, James Massenglae, Kevin Gibson, The Orange Grove Center and The Special Hope Foundation.) •
“I live in his world,” is indeed the enchilada statement about supporting people with dementia.
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
AUTISM SCIENCE FOUNDATION OFFERS IMFAR TRAVEL GRANTS TO FAMILIES & CAREGIVERS
T
he Autism Science Foundation, a notfor-profit organization dedicated to supporting and funding autism research, recently announced that is offering a limited number of grants to parents of children with autism, individuals with autism, siblings, special education teachers, students and other stakeholders to support attendance at the International Meeting for Autism Research (IMFAR), to be held in Baltimore, Maryland from May 12 to 14, 2016. Awards of up to $1000 can be used to support reimbursement for registration fees, travel, accommodations, meals and other directly related expenses, including childcare or special accommodations to enable individuals with autism to participate. IMFAR is an annual scientific meeting convened each spring to promote, exchange and disseminate the latest scientific findings in autism research and to stimulate research progress in understanding the nature, causes, and treatments for autism spectrum disorders. IMFAR is the annual meeting of the International Society for Autism Research (INSAR). Awardees will be expected to provide a written summary of their observations and experiences to share with the general public. To apply, send a letter to
[email protected] describing why you want to attend IMFAR and explaining how you would share what you learn there with the broader autism community. Letters should be sent as Microsoft Word attachments of no more than 2 pages, 12-point type, “Arial” font, with standard margins. In the subject line please write: IMFAR Travel Grant. Grants are awarded only to US residents over 18 years of age. Letters must be received by midnight eastern time on February 29, 2016. Recipients will be announced in late March. Additional application information is available at www.autismsciencefoundation.org/what-wefund/apply-for-IMFAR-travel-grant • eparent.com | EP MAGAZINE • February 2016 5
NEW PRODUCTS MAKE A SOUND AND MOVE AROUND Make a Sound and Move Around is designed for use by toddlers and young children to nurture coordination, speech, sensory integration and social skills. It is a collection of 16 songs and activities. There is an accompanying “how to” booklet is filled with activity ideas and resources for parents and teachers. POCKET FULL OF THERAPY PO Box 174 Morganville, NJ 07751 Telephone: 732.462.4474 Fax: 732-462-4456 Email:
[email protected] Web: www.pfot.com
ATLAS WALKER Atlas Walker is designed for use by children with mobility disabilities associated with cerebral palsy, traumatic brain injury and muscular dystrophy. It is designed to encourage active weight bearing in young children. It features a height-adjustable frame, which has a swivel seat to allow hip movement when walking. This allows the users to develop their own gait pattern. The walker features: height, angle and depth
adjustable handgrips; prone angle adjustments; and four castors with rear brakes. It also has adjustable suspension to provide customized support and lift for the user. LECKEY ASSISTIVE TECHNOLOGY PRODUCTS 19C Ballinderry Road Lisburn, BT28 2SA United Kingdom Telephone: 0800 318265 (02892 600750)
CHILDREN’S POTTY SEAT This Children’s Potty Seat is designed for use by children with limited upper and lower extremity mobility as a result of cerebral palsy, developmental delays, or stroke. It is height adjustable to offer as much comfort as possible while remaining secure. The removable pan allows it to be washed with ease while remaining hygienic. The potty also comes supplied with lap and shoulder straps to offer addi-
tional support while ensuring that the user is secure as possible. The removable pan can be autoclaved at 85 degree Celsius for a maximum of three minutes. COMPLETE CARE SHOP Unit 1A, Brook Mill Estate, Station Road, Wrea Green Lancashire, PR4 2PH United Kingdom Telephone: 0845 5194 734 Fax: 01772 681616 Web: www.completecareshop.co.uk 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. 6 February 2016 • EP MAGAZINE | eparent.com
NEW PRODUCTS BOARD BUG ADVANCED DOIDY CHILDREN BABY & CHILD MONITOR NOSEY CUP The Board Bug Advanced Baby and Child Monitor is designed for use by caregivers who may be hard of hearing. It consists of two lightweight portable units that can be worn by parent and child. It provides monitoring of a baby or child through the various stages of growth and is designed to alert parents if a baby is crying or a toddler has wandered off out of range. The parent’s unit also functions as a digital watch and alarm, while the antitamper baby or child monitor can be worn on the wrist or attached to a crib or stroller. It can be set to sound an alert when movement or crying is detected, when the room temperature is outside a pre-set range or to notify parents of feeding times. Alert options include vibrating, ringing or flashing. For toddler monitoring, the range can be set to near, mid, or far distance and sound an alert if the toddler wanders out of the selected range. The parent’s unit can activate the child’s unit to sound an alarm which will help locate them if they wander off. The child's unit also includes a panic button that an older toddler or child can be taught to use should they need it. ASSIST IRELAND Citizens Information Board 7th Floor, Hume House, Ballsbridge Dublin, Ireland Email:
[email protected] Web: www.assistireland.ie
Maddak Pediatrics’ Doidy Nosey Cup is designed for use by children with drinking and limited upper extremity strength and coordination. There are handles on each side for a secure grip. The angle provides space for nose and eye glasses, while making drinking easier and more controlled. SP ABLEWARE (formely Maddak, Inc.) 661 Route 23 South Wayne, NJ 07470 Telephone: 800-443-4926 Fax: 973-305-0841 Web: www.maddak.com/index.php
HUSH BUDDY EARMUFF The Hush Buddy line is protective gear that is designed to block out the maximum amount of external noise. This Hush Buddy Earphones are designed for small children who will be engaged by the colorful pictures on the side of the earphones. They are padded and the headband is adjustable. They block out enough noise to decrease a chance of the “fight or flight” response. CALIFONE INTERNATIONAL, INC. 9135 Alabama Avenue, #B Chatsworth, CA 91311 Telephone: 800-722-0500 Fax: 877-402-2248 Email:
[email protected]
CHILDREN'S SWITCH AND TOUCH PROGRESSIONS Children’s Switch and Touch Progressions is a switch or touchscreen activity designed for children with cognitive & learning disabilities, cerebral palsy, and fetal alcohol syndrome (FAS) who are learning to activate and when NOT to activate the switch/iPad. Music is the key reinforcement with animated scenes of life situations as the graphic elements. Many Skinner/behavioral prompts/features are built in, such as “Wait,” “Stop, please,” positive reinforcement, motivating operations, and others. RJ COOPER & ASSOCIATES 27601 Forbes Road, Suite 39 Laguna Niguel, CA 92677-1241 Telephone: 800-752-6673 Fax: 949-582-3169 Web: www.rjcooper.com Email:
[email protected] eparent.com | EP MAGAZINE • February 2016 7
SIBLING TIES
PAIGE TALHELM
Guardianship It astonishes me that complete strangers read a few documents and heard an hour of testimony, and made the decision for this human being that will affect the rest of his life… even though we are the ones who have been there for him, every single day, for 18 years.
What was the biggest day of your life? Was it your wedding? Your child being born? That big promotion you’d been working towards for years? At the age of 24, I have already had the biggest day of my life. Recently, my brother turned 18, so we had to file for guardianship. That was the biggest day of my life. I feel like I have been preparing for this since Sammy was born. It has always been my vision to have him live with me once he got older. I wanted to do it to finally give my mom a break. I wanted to be able to give Sammy a somewhat normal, “away from home” experience, where his safety wasn’t a worry for any of us. I always knew I wanted to be Sammy’s future guardian and when it actually came time for the petition for guardianship, I couldn’t have been more certain that this was the right thing for me to do. The process for filing for guardianship is painstakingly long and confusing. My mom spent months filing paperwork, tracking down old documents, visiting lawyers, taking Sammy to doctor check-ups, etc. All of this, in addition to her full time job and taking care of two kids. I still have no idea how she keeps her head on straight with all of these stresses. Sammy was appointed an advocate, which was probably the most emotional thing about this entire process. For one, having an appointed advocate made it all real. Although I love Sammy, it breaks my heart to know that he needs an appointed guardian because he is unable to make decisions for himself. Secondly, when I interviewed with the advocate to explain why I wanted to be his guardian, I came away from it so distraught. The advocate had questioned me about every little detail and I almost felt like I was a criminal. For someone who often takes off work for appointments, travels two 8 February 2016 • EP MAGAZINE | eparent.com
hours to watch Sammy, and has dedicated her whole life to her brother’s cause – I came away from it feeling like I hadn’t done enough. Finally the day came and I had never been more anxious in my life. Although I know that I am the rightful guardian if anything should ever happen to my mom, I had myself worrying – what if these strangers don’t see how close Sammy and I are? How much he means to me? What if the thing I had been working towards all these years didn’t work out? How would I deal with it? What would happen to Sammy? I had never been to a court hearing. I could imagine it being like the shows I see on TV. It really was funny to me though, that this was a hearing for someone with special needs and when Sammy came in with his music on, they informed us that it was absolutely unacceptable. Sammy was put in a side room (still in the court room) with our cousin, where he could listen to his music freely and wander around. But really? Even though I understand that it may make things difficult to hear, this was HIS hearing. Let’s at least give him the decency to pretend that he could understand a little of what’s going on. Or even that we’re all here, based on the fact that someone has special needs – and couldn’t we make little exceptions? So, after months of preparation… the hearing was over. Just like that. The decision wasn’t even made there that day in the courtroom; we had to wait almost two weeks to hear back! I was named alternative-co guardian rather than co-guardian. This means that if anything should happen to my mom, or Sammy’s dad, I would step in as the other guardian. However, our goal was to have all three of us as equal
guardians. Although I am still a guardian, I was totally crushed. This was the most important decision and plan of my life. I couldn’t believe that I wasn’t “good enough” to be one of Sammy’s main guardians. Although I am still a big part of his guardianship, I felt like I was named as a “just-in-case” guardian. Even though I know better, it was like the judge saw me as not doing what I needed to be doing to be his guardian. I am happy that there are things in place like this to keep people like Sammy safe and free from being taken advantage of, with them being over 18 with special needs. But it also astonishes me that complete strangers read a few documents and heard an hour of testimony, and made the decision for this human being that will affect the rest of his life…even though we are the ones who have been there for him, every single day, for 18 years. Sammy will be taken care of, regardless of the guardianship hearing, and that’s all that matters. And I cannot wait for us to finally live together on our own together. • SIBLING TIES Paige Talhelm, 23, lives in the Baltimore area and will begin pursuing her Master’s degree in Education of Autism & Pervasive Disorders at Johns Hopkins this coming fall. She is currently a Director at PALS Programs, an advocate for The Next Step Programs, and leads a support group for siblings of individuals with disabilities. She is the older sister of two brothers, Sammy and Jack. Sammy, 17, has autism, is non-verbal, and is not toilet trained. He is the sole reason for Paige’s push to help individuals with special needs. She hopes to one day create a program for Autism treating adults over 21 with job searching, continuing education, learning life skills, and to increase their independence. Read more about Paige’s life as a sibling of autism on her blog: www.sammyssister.weebly.com
NOMINATION FORM Send in your nominations now! Deadline is June 30, 2016
EP MAGAZINE’S
2016 TEACHERS of the YEAR AWARD SECTION 1
SECTION 2
NAME & POSITION OF THE TEACHER BEING NOMINATED:
NAME & POSITION OF THE PERSON NOMINATING THE TEACHER:
______________________________________________________________________________
_________________________________________________________________
PHONE NUMBER:
PHONE NUMBER:
______________________________________________________________________________
_________________________________________________________________
EMAIL ADDRESS:
EMAIL ADDRESS:
______________________________________________________________________________
_________________________________________________________________
SCHOOL: ______________________________________________________________________________
SCHOOL ADDRESS: ______________________________________________________________________________
SECTION 3 REASON FOR NOMINATING THE TEACHER (UP TO 10 SENTENCES. PLEASE USE A SECOND SHEET IF NEEDED): ___________________________________________________________________________________________________________________________________________________ ____
___________________________________________________________________________________________________________________________________________________ ____
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[email protected] More details on EP’s Facebook page. Thank you! eparent.com | EP MAGAZINE • February 2016 9
ABC: ALL BEHAVIOR COUNTS
ROBERT K. ROSS ED.D., BCBA-D, LBA A NEW COL UM FOR N EP!
A Day in the Life of a Board Certified Behavior Analyst, Part 1 A big part of my job is to carefully analyze details of interactions between the learner and the people in that environment when the behavior occurs. This is the first in a series of articles highlighting the roles, responsibilities and services of a Board Certified Behavior Analyst (BCBA). Early Intervention Intensive Behavioral Intervention Supervision:
EARLY INTERVENTION INTENSIVE BEHAVIORAL INTERVENTION SUPERVISION
I begin my day by traveling to the home of a two-year nine-month old child boy (Joe) who is diagnosed with autism spectrum disorder (ASD) and is receiving 25 hours of carefully structured teaching and family support, based on the principles of applied behavior analysis (ABA). I supervise the staff who do the direct teaching and work with the family to help them better understand how Joe learns. He has made great progress since treatment began at age two. He is now verbal and is now rapidly gaining the social and interactional skills that he did not demonstrate at the time of his initial diagnosis. I begin my work, by sitting down with mom and the staff, to review the data on the goals and objectives we are working on. We see in the data a continuing improvement in most goals, but we focus on two graphs which show that Joe is struggling to learn the skills. These skills are “turn taking” and “initiating talking to others.” We have been working on turn taking with Joe and his sister and improving his initiation of social interactions with others (in particular other family members and neighbors). After a brief discussion, and review of what is not working, we decide to use video modeling as a prompt for these programs. We chose this because the verbal cues were getting him to talk (imitate us), but were not resulting in independent initiation. Challenges with initiation are a common problem in children with ASD, and a wide range of pro10 February 2016 • EP MAGAZINE | eparent.com
cedures to address this have been identified in the research that helps; video modeling is just one of these procedures. Also, we had used video modeling effectively in teaching other play routines. I quickly wrote up a set of procedures (skill program) and then created a video model using mom’s phone. To make sure that the program would work, I implemented the procedures with Joe. Once he was successfully initiating the modeled language, I had the staff and mom practice the program. After some practice and feedback, they both were able to run the program. We continued to review the programs and data until mom raised a concern about how Joe was reliably following verbal directions during our sessions,
out to other rooms. First we had mom provide reinforcement to Joe for following directions (from staff in the teaching session). Next we had mom give the directions in session while continuing to reinforce instruction following. Once Joe was reliably following them for mom in this context, we moved to other settings in the home and outside in the yard. We used this approach with several types of directions from mom to ensure broad generalization of instruction following. This systematic approach to help ensure generalization is somewhat time intensive, but it worked very well for mom and Joe. After completing all of the services documentation requirements (case notes and other paper work), I left and drove to a local public school where I would be consulting with a kindergarten team regarding the challenging behavior of a student in school.
BEHAVIORAL CONSULTATION PROVIDED IN LOCAL PUBLIC SCHOOL
but often ignored the same instructions from mom after we left. This is also a fairly common problem for many children with ASD, so I suggested that we follow a systematic procedure for supporting responding to mom (we refer to this as generalization of skills). We began practicing instruction following in the teaching sessions and carefully moved to other activities in the room, then
Team Meeting: My visit begins with a meeting of the kindergarten staff. The staff and administrators described their concerns about the disruptive behavior of a child who is new to their classroom. Prior to my visit, that school had obtained parental consent for me to review assessments, reports and other relevant data about the student which I had reviewed before coming to the school today. The first thing we did was meet to clarify the goals for today’s visit. As is often the case, the staff tell me what problem behavior looks like (e.g., being off-task, bothering peers and not following teacher verbal directions). They also make it clear to me that they want the child
to stop doing these behaviors. The staff also report that the child appears to be trying to “avoid” completing work. I politely explain that my role is not just stopping “bad” behavior, but looking at and changing the routines and instructional supports in place so that they more effectively support positive behavior. I note that creating new routines is always easier than stopping bad ones. The next step for me is to observe the child and determine what the child has learned well and now does independently. I also need to identify skills that have been worked on for a long time, but without much success. I want to be able to describe the difference between effective teaching procedures for this child with those teaching practices that have not been successful in helping this child learn skills or positive behavior. The teachers are able to provide me with a number of useful examples of both effective learning and ongoing problem behavior. With this information to guide my observations, I then go to the student’s class for some direct observation. It is often said that “the devil is in the details.” In my view, it is the answers that lie in the details. A big part of my job is to carefully analyze details of interactions between the learner and the people in that environment when the behavior occurs. Behavior analysts rely on data from direct observation of behavior, we collect objective information about what happens before and critically, what happens after problem and adaptive behavior occurs. The information obtained allows for the development of hypotheses (an educated guess made from facts about behavior) as to why the child has learned to engage in a particular form or forms of behavior in certain conditions and not others. I am often surprised by the prevailing notion that only adaptive behavior, (reading, writing, talking etc.) is learned. Many people see problem behavior and attribute it to a disorder or disability rather than learning processes. Behavior analysts do
not draw this distinction. We seek to understand how the current environment makes a particular behavior functional for the person who is doing it. That is why observation of the behavior is so important. Classroom Observations: In the classroom I am introduced as a person who wants to become a teacher and has heard that their teacher is awesome, so I wanted to watch her and learn how to be a better teacher. This allows the students to perceive that I am watching the teacher and not them. I find that this minimizes child anxiety about my presence and increases the chances that students will not be overly reactive to my presence. While watching the student, I notice that whenever the child is off-task, the teacher comes over to speak with the student to verbally explain the classroom rules to the child. I observe this happen 15 times in a 45-minute block of time, or roughly once every three minutes. It is important to note that while the teacher perceived that the child was trying to “avoid” work, the data suggested that the child was actually seeking teacher interaction. Objective data collection is a critical part of the work of a behavior analyst; it allows us to move from subjective (and often incorrect) interpretation of the reasons for behavior, to more objective analysis of the effects of a person’s behavior on the behavior of others. I also observe a small group activity where a structured routine involving lots of teacher interaction. I note that almost no off-task or disruptive behavior occurs in this activity. Staff working with the child were all in agreement that he “likes teacher and adult attention,” but they had not thought that the kind of attention they were giving him after problem behavior might be something he wanted. In their view, they were reminding him of rules or reprimanding him for problem behavior, not reinforcing him. The idea that these forms of teacher attention could be preferred by him had not occurred to them.
“It is often said that ‘the devil is in the details.’ In my view, it is the answers that lie in the details.”
I suggested that we test the idea that offtask and disruptive was something he did to make the teacher talk to him more frequently. First, we needed to see what was objectively true – did he prefer being left alone (avoiding work) or would he rather have teacher’s attention than be left alone? To do this, we taught him a new routine where he could do one task and immediately get a conversation with teachers, or he could do a similar task and as soon as he was done, they would leave him alone for three minutes. After only a few times, he began to ask for the task that resulted in teacher attention. After the fifth time we did this, he only asked for the task that resulted in teacher attention. This was a fairly good demonstration of his preference for teacher attention over being alone. It also showed that he would ask to work to get teacher attention. To obtain additional objective data showing that he was using off-task and disruptive behavior to get teacher attention rather than avoid academic work, we tried a few similar activities and saw the same result. Once we were convinced by the learning data, I left the classroom to draft some general classroom and instructional recommendations. • Next Issue: Writing Behavioral Guidelines and Teaching Procedure Recommendations, and more. ABC: ALL BEHAVIOR COUNTS Robert K. Ross Ed.D., BCBA-D, LBA is the Senior Vice President of Curriculum and Research at Behavioral Education Assessment and Consultation Inc. (BEACON Services of Massachusetts and BEACON of Connecticut). Dr. Ross is also President Massachusetts Association for Behavior Analysis. He received his doctorate in educational leadership from Nova Southeastern University and his master's in applied behavior analysis from Northeastern University. He is the co-director of the BCBA certification program at Cambridge College in Cambridge, Massachusetts. In addition to his teaching and research roles at BEACON, he consults with programs and works directly with individuals with autism and Asperger's Syndrome as part of his caseload responsibilities at BEACON. Dr. Ross has presented more than 100 applied research poster presentations, workshops, and symposia at ABAI conferences and authored several related articles.
eparent.com | EP MAGAZINE • February 2016 11
HAPPY VALENTINES DAY
for your little sweetheart
FELTMAN BROTHERS’ PIMA COTTON COLLECTION From the moment you first see and feel the new Pima Cotton line from Feltman Brothers, you’ll be captivated. With their brand new layette collection, this steepedin-tradition company has combined their beautiful smocked and embroidered trademarks with baby-friendly functionality to create items for everyday comfort and enjoyment!
PRETTY IN PINK: (Above) Girls Pima Cotton Embroidered Bow Blanket, Romper, Hat and Bib. (Left) Boys Pima Cotton Smocked Diamond Romper and Hat. The Pima collection is the perfect choice for comfort, style, and everyday wear. Made exclusively from the softest cotton grown in Peru, parents will be in awe over how Feltman Brothers stayed true to their heirloom quality while providing items that are perfect for babies the moment they arrive in this world. Parents will love every-
thing about the Pima Cotton layette items – from baby’s head to baby’s toes. Whether you’re trying to find the perfect gift for a special baby shower or something for your own little sweetheart, you’ll love the new Pima collection for baby boys and girls.
ABOUT FELTMAN BROTHERS
Since 1916, Feltman Brothers has been providing the world with authentic and timeless clothing for babies in classic tradition. This reputation is the result of a strong commitment to quality, incomparable fabrics, exclusive designs, and attention to detail. Feltman Brothers designs reflect the elegance of vintage styling for children from newborn through toddler, including babies take-home attire, layette needs, sacred occasion gowns and accessories, holiday wear, and special occasion wear. Feltman Brothers use of
12 February 2016 • EP MAGAZINE | eparent.com
embroidery is a skilled craft and trade, one that Philippine mothers pass down to their daughters, working on machines that are almost 100 years old. Feltman Brothers is, and always has been, a family business, now three generations deep. The company will celebrate its 100 year anniversary in 2016. Find more beautiful designs from Feltman Brothers by visiting their website at www.feltmanbrothers.com You can also follow them on Facebook, Twitter, Pinterest and Instagram.
HAPPY VALENTINES DAY THE OLLIE SWADDLE
B
aby will go "gaga" over this cozy swaddling solution! Designed to decrease fussiness and assist in self-calming, the Ollie Swaddle also improves the quality and duration of sleep! Features elasticity to allow freedom of movement and an opening at the bottom for hassle-free diaper changes, as well as custom-developed moisture wicking material to reduce overheating. Also has a custom closure with soft Velcro, which allows for variation of tightness, depending on the need and size of the infant. The ease of use eliminates frustration and promotes periods of alert and focused interaction between caregiver and infant, thus enhancing bonding (which is essential to all facets of neurodevelopment). For ages 0 to 4 months, the 92% polyester/ 8% Spandex Ollie Swaddle was made to grow with your baby. Available in Blue Stripe and Pink Stripe, The Ollie Swaddle retails for $48.00 at TheOllieWorld.com.
FIVE HELPFUL VALENTINE’S DAY TIPS TO PARENTS FOR A FULFILLING RELATIONSHIP ustaining a healthy and fulfilling marriage or relationship while raising a child with special needs is no easy task. Managing all aspects of a child’s daily living – including personal needs, school activities, therapy and medical appointments – can leave little time for oneself, much less a partner. Deanna Picon, founder of Your Autism Coach, LLC and author of The Autism Parents’ Guide to Reclaiming Your Life, advises parents to apply these simple tips for keeping their relationship strong and making their marriage a priority again. 1. Give yourself permission to enjoy. Parents of special needs children may feel guilty for a having a good time, even if it’s only for a short time. There is no reason to feel bad for wanting some time with your spouse to resume the activities, events and hobbies you used to do before having kids. In fact, it’s probably the best thing you can do for your family. Every couple needs and deserves some time together to re-connect and keep the emotional and communication bonds strong. 2. Schedule some couple time. It can be as simple as scheduling “fun nights” for yourselves on a weekly or monthly basis. Go bowling or to a movie. Eat out. It doesn’t have to be a 3-course meal at a 5 star restaurant. A quick bite at a local diner is fine. The important thing is that you’re spending quality time together without try-
S
ing to cook dinner, tend to your child’s needs, and clean the house at the same time. 3. Ask for help when you need it. There’s no shame in asking a family member or close friend to stay with your child for a few hours so you and your partner can have some quality time and a muchdeserved break. You’ll be pleasantly surprised how much people want to help and support you. Let them come over to take care of your child in your home. You’ll know your child is safe and well-cared for, and there’s no child care costs. 4. Appreciate each other. Show appreciation for all the wonderful or demanding things you are doing as partners and parents. Tell each other, “You’re doing a great job” every once in a while. Thank each other for acts of kindness, such as letting you sleep late some mornings. 5. Express your love. Always remember, attention and affection for each other doesn’t have to be reserved for just date nights and special occasions like Valentine’s Day. A little extra effort on both sides can generate ongoing intimacy. A kiss goodnight, a gentle touch as you pass in the hall, a love message by e-mail or text. These little gestures can mean so much. Your Autism Coach, LLC provides superior coaching services and seminars that address the issues and concerns of parents of special needs children. • eparent.com | EP MAGAZINE • February 2016 13
AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE & DENTISTRY
Asian Children with Autism and Other Disabilities in Asia and the U.S. BY H. BARRY WALDMAN DDS, MPH, PHD, ALLEN WONG DDS, EDD, STEVEN P. PERLMAN DDS, MSCD, DHL (HON), AND MISHA GAREY, DDS WHAT IS AUTISM SPECTRUM DISORDER? “Autism spectrum disorders (ASD) are a family of neurodevelopmental disorders of rapidly increasing incidence that are characterized by impairments in communication and social interaction along with restrictive and repetitive behaviors. The brain tissue of patients with autism shows subtle developmental abnormalities, specifically in those areas concerned with language, facial expression, movement, and social behavior.” 1 “ASD originally was thought to be a static, inheritable neurodevelopmental disorder, and our understanding of it is undergoing a major shift. It is emerging as a dynamic system of metabolic and immune anomalies involving many organ systems, including the brain, and environmental exposure… How gastrointestinal (GI) factors are related to ASD is not yet clear. Nevertheless, many patients with ASD have a history of previous antibiotic exposure or hospitalization, GI symptoms, abnormal food cravings, and unique intestinal bacterial populations, which have been proposed to relate to variable symptom severity…”2
IN ASIA “Because of stigma, lack of awareness about mental health and poor medical infrastructure, few autism prevalence studies exist outside of the U.S., Canada and the U.K. ”3 “In urban areas of South Korea, some families of children with developmental delays will go to great lengths to avoid a diagnosis of chapae, or autism. They think of it as a genetic mark of shame on the entire family, and a major obstacle to all of their children's chances of finding suitable spouses. The stigma is so intense that many Korean clinicians intentionally misdiagnose these children with aechak changae, or reactive detachment disorder — social withdrawal that is caused by extreme parental abuse or neglect. ‘The parents prefer this [diagnosis] because the mother can take the bullet and protect.’ everybody else,”3
“Autism in India also needs to be viewed in the context of attitudes toward disability more generally. Traditionally there has been stigma attached to disability – shame, embarrassment, concerns about inadequate parenting – perceptions that are shared by many countries worldwide. Autism comes with unusual behaviours, fuelling beliefs about what affected the children. Historically, stigma ensured that families hid their strange children. Since autistic children were not seen, they did not exist, which acted as a barrier to awareness. It isolated families, creating a cycle of ignorance and superstition.” 4 “The term for disability in Chinese is ts’anchang or ts’anfei which means disabled, with obstacle or useless. A person with disability normally will be associated with helplessness or hopelessness. The birth of a child with physical or intellectual disability is perceived as evidence of a parent’s bad karma from the past, or a curse from ancestors. Traditional Chinese mothers who gave birth to a child with disability have been reported to blame themselves for violating cultural taboo, for examples using sharp instruments, visiting cemetery, or eating the wrong kind of food.”5 “Traditional Chinese medicine views Autism as a “Yin” disorder, manifested by social isolation, lack of communication and apathy. • Acupuncture has benefits in relieving core symptoms of autism (social and communicative impairments) and associated problems. It is gaining popularity in China as a way to treat autism. • In Beijing and Shanghai, much of the treatment for autism involves sit and relaxation. • All services for children with autism were in the private sector. • Greatest challenge is the severe shortage of adequately trained personnel to address the needs of children with autism.”6
AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE AND DENTISTRY The American Academy of Developmental Medicine and Dentistry (AADMD) was organized in 2002 to provide a forum for healthcare professionals who provide clinical care to people with neurodevelopmental disorders and intellectual disabilities (ND/ID). The mission of the organization is to improve the quality and assure the parity of healthcare for individuals with neurodevelopmental disorders and intellectual disabilities throughout the lifespan. 14 February 2016 • EP MAGAZINE | eparent.com
TAKING NOTICE: Hopefully, the particular care, interest in, and support of Asian-American youngsters with disabilities and their heritage, traditions and society will not be unnoticed because of the “limited” numbers. The first prevalence studies in any region typically find low numbers. For instance, a study in Brazil found 27.2 cases of autism per 10,000 children. A report from Oman found 1.4 cases per 10,000. Similarly small numbers have come out of studies in China (16.1 per 10,000) and Indonesia (11.7 per 10,000). 7-9 “These low rates are likely to be the result of the methods used, experts say.”3
IN THE UNITED STATES The prevalence of special health care needs also varies by the race/ethnicity of the child. Among children (
