Exceptional Needs Issue 7
T O D AY
UNLOCKING THE JOY WITHIN YOUR FAMILY
EVERY CHILD HAS A SONG: COMMUNICATION THROUGH MUSIC
EMPOWERING EXCEPTIONAL KIDS AS THEY GROW
SECRETS I WISH I’D KNOWN ABOUT TRAVELING WITH MY AUTISTIC SON
Best Ways to Identify and Manage Depression
SP
Raise Your Voice: Authentic Casting in Media
ECI AL ISS AWA UE RD S
THE FUTURE STARTS TODAY
A Special Needs Plan can help answer these questions: 1. Who is going to take care of your child after you are gone and where will they live?
2. How much will that care cost and how are you going to pay for that care? 3. Do you have a special needs trust and do you know how much money you will need in it? How are you going to fund it? How are the funding instruments taxed when you die? 4. What government benefits are available to your child and how do you apply for them? 5. What is the Medicaid waiver and how do you apply for it? 6. How will you communicate your plan to family members?
www.ASpecialNeedsPlan.com Phone (704) 326-7910 Securities and investment advisory services offered through qualified registered representatives of MML Investors Services, LLC, Member SIPC. 4350 Congress Street, Suite 300, Charlotte, NC 28209. 704-557-9600. A Special Needs Plan is not a subsidiary or affiliate of MML Investors Services, LLC or its affiliated companies.
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Contents
Issue 7 LET’S CELEBRATE OUR EXCEPTIONAL CONTRIBUTORS AND BOOK AUTHORS
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Amy KD Tobik Start the New Year commemorating the individuals who shared their voice with Exceptional Needs Today in 2021.
KATE MAKES IT GREAT! HOW CAN I HELP MY CHILD WITH ASD BETTER CONNECT WITH HIS PEERS?
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Kate C. Wilde Remind yourself you are enough and learn ways to support your neurodivergent child’s first steps in connecting with their peers.
EMPOWERING EXCEPTIONAL KIDS AS THEY GROW
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Dr. Chris Abildgaard, EdD, NCSP, LPC, NCC Learn how to help children feel more empowered and ways to foster independence as we welcome the new year.
BRINGING FUNCTIONAL BEHAVIORAL ASSESSMENT INTO THE 21ST CENTURY Connie Persike, MS, CCC/SLP Find out why there is a paradigm shift as we learn more about neurodiversity and behaviors that interfere with learning, as well as why it matters.
24 THE EXCEPTIONAL NEEDS JOURNEY: LESSONS LEARNED THAT CHANGED OUR LIVES
07 UNLOCKING THE JOY WITHIN YOUR EXCEPTIONAL NEEDS FAMILY Amy Nielsen Discover ways to transcend happiness by focusing on the joy within your household while managing the struggles of daily life.
33 SECRETS I WISH I’D KNOWN ABOUT TRAVELING WITH MY AUTISTIC SON
Markeisha Hall Recognize that exceptional needs do not need to exclude anyone from enjoyable travel and learn what options are available to make it possible.
36 EXCEPTIONAL BOOKS LIFE AFTER LOCKDOWN RESETTING PERCEPTIONS OF AUTISM
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This unique collection of essays written by more than 40 voices explores our world as we attempt to return to post-pandemic daily life.
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Sandy Petrovic, RN, BSN and David Petrovic, BA, MAT Excellent tips from an autism mom and her adult son with ASD about the important things in life, drawn from the lessons they learned through challenges and triumphs.
37 NATURE NOTES OUTSIDE ADVENTURES, PART ONE: BOOSTING THE SENSES USING SIMPLE SENSORY ACTIVITIES
Amy Wagenfeld, PhD, OTR/L, SCEM, EDAC, FAOTA Uncover the differences between the five basic senses, how sensation is processed, and activities for getting to know them using nature.
40 UTILIZING STRUCTURE TO GROUND AND ENLIVEN THE NEW YEAR Michael A. Wynne, LICSW, MTS and Maria F. Gilmour, PhD, BCBA-D Learn ways to add structure to your home life to create a more grounded, enjoyable environment, especially during major events such as New Year’s celebrations.
44 LET’S USE THE RESOURCES WE ALREADY HAVE TO SUPPORT EXCEPTIONAL NEEDS STUDENTS
Karen Kaplan An enlightening look at how the needs of students can be supported by employing the knowledge of paraprofessionals, teachers, and parents.
48 FINANCIAL FOCUS ENSURING YOUR EXCEPTIONAL CHILD’S NEEDS ARE ALWAYS MET WITH A FINANCIAL PLAN Ryan F. Platt, MBA, ChFC, ChSNC, CFBS As we enter the new year, read this review of the areas of special needs planning so you can refresh an existing plan if necessary or start a new one with a solid foundation.
50 THE DIFFERENCE BETWEEN IEP GOALS AND IEP OBJECTIVES Carly Quinlan Understand how to distinguish Individualized Education Program (IEP) goals and objectives and ways they can best be applied in a complete IEP.
53 FORMING A BOND WITH HIGHER EDUCATION FACULTY AS A STUDENT WITH A DISABILITY IS ONLY A PHONE CALL AWAY Toby Tomlinson Baker, PhD Students with a disability may feel more nervous than others about starting college life. Discover ways connecting with the new faculty ahead of time may help put students at ease.
55 FIRST STEPS FOR MANAGING CYSTIC FIBROSIS DIAGNOSIS Dr. Ronald I. Malcolm, EdD Read 10 points of consideration for assisting your child with cystic fibrosis in managing their condition in school and out.
58 BEST WAYS TO IDENTIFY AND MANAGE DEPRESSION
J. Edwards Holt Anyone can experience depression, but it affects everyone differently. Learn how to identify it and what to do if you or your loved ones show signs of depression.
61 SAFETY GOALS WITH NICOLE KEEPING INDIVIDUALS WITH EXCEPTIONAL NEEDS SAFE THOUGH EDUCATION AND RESOURCES
Nicole Moehring Introduce yourself to the mom behind Voices of Change 2018 (VOC18) in a new column focusing on reducing risks and developing community resources for disabled abuse victims.
63 EVERY CHILD HAS A SONG: SUPPORTING COMMUNICATION THROUGH MUSIC
Rose Adams, MS, OTR/L Music can have a positive impact on a child’s development and social relationships. Learn from an occupational therapist how to identify and listen to your child’s song for better communication.
66 HOW WRITING THE STORY OF MY LIFETIME DISABILITY BROUGHT ME FREEDOM, PEACE, JOY, AND THE COMPASSION TO HELP OTHERS
Victoria K. Mavis, SPHR Read about a woman’s emotional struggle to overcome the grief surrounding her disability to share her story, empower others, and find personal peace.
69 TAKING CARE OF YOU—THE IMPORTANCE OF SELF-CARE WHEN THERE ARE EXCEPTIONAL NEEDS
Annette Nuñez, LMFT, PhD Unleash your true parenting potential by participating in the 21-Day Self-Care Challenge to better regulate your mood and quality of life.
71 THE POWER OF ART THERAPY
JC Ellinger Discover the healing power of art therapy and how it can improve the confidence and self-esteem of teens with autism.
73 RAISE YOUR VOICE: AUTHENTIC CASTING IN MEDIA
Roxanna Lewis Find out about the production of MANDY’S VOICE, a groundbreaking film about a nonverbal autistic girl featuring a cast of neurodivergent individuals and advocates while learning the value of authentic casting.
EXCEPTIONAL NEEDS TODAY
Exceptional Needs T O D AY
Our mission is to educate, support, and energize families, caregivers, educators, and professionals while preparing all families for a healthy future. exceptionalneedstoday.com Founder/Publisher Amy KD Tobik Lone Heron Publishing, LLC Magazine Staff Editor-in-Chief: Amy KD Tobik Editorial Assistant: Margo Marie McManus Copyeditor: Dione Sabella Professional Consultants Chris Abildgaard, EdD, NCSP, LPC Debra Moore, PhD Brett J. Novick, MS, LMFT, CSSW Annette Nuñez, PhD, LMFT Ron Sandison Amy Wagenfeld, PhD, OTRL, SCEM, EDAC, FAOTA Contact Us editor@exceptionalneedstoday.com advertising@exceptionalneedstoday.com submissions@exceptionalneedstoday.com editorial@exceptionalneedstoday.com
COVER PHOTO CREDIT – Erin Miller
78 EXCEPTIONAL ADVICE FROM MESHELL I’M A SINGLE PARENT—AM I READY TO DATE AGAIN?
Meshell Baylor, MHS Learn some tips on balancing relationships while caring for your special needs child as a single parent. Exceptional Needs Today is published six times a year and distributed digitally to readers for free by Lone Heron Publishing. Disclaimer: Advertised businesses and products are not endorsed or guaranteed by Exceptional Needs Today, its writers, or employees. Always follow medical advice from your physician.
Exceptional Needs Today | Issue 7 | 5
From the Editor’s Desk For last year’s words belong to last year’s language. And next year’s words await another voice. And to make an end is to make a beginning. —T.S. Eliot It’s a new day—a new year! Let’s bid farewell to yesterday and embrace new beginnings. COVID-19 has had a lasting impact on our families over the past couple of years. It has significantly affected our businesses and educational systems as well as our physical, emotional, and mental health. Since we all could use some positivity and support in the new year, we have dedicated this issue to finding new ways to grow, connect, and achieve emotional well-being. Amy Nielsen, mother of Barclay, the six-year-old featured on this month’s cover, believes happiness can transcend any challenge because it comes from within, not from outside sources. To learn simple yet effective ways to elevate your life while dealing with everyday struggles, be sure to read her piece, Unlocking the Joy Within Your Exceptional Needs Family. Amy’s sage advice will uplift and leave you and your loved ones feeling renewed. Dr. Chris Abildgaard, EdD, NCSP, LPC, NCC, provides excellent advice on goal-setting in his piece, Empowering Exceptional Kids as They Grow. While traditional goals, such as earning better grades or passing the driver’s test, are valuable ambitions, he challenges parents and caregivers to take goals to another level in the new year. Be sure to read his piece as he explains ways to help young people feel heard, seen, and empowered. These skills can help them feel safe and allow them to garner control over their anxious feelings. Ultimately, these abilities can help foster independence. During these demanding times, do you regularly devote enough attention to maintaining your own health and well-being? Do you feel depleted or defeated? Annette Nuñez, LMFT, PhD, says selfcare is a mindset. In her piece, Taking Care of YOU—The Importance of Self-Care When There are Exceptional Needs, she emphasizes the need to set aside time to care for yourself so you can effectively support others. As she explains, “Self-care is a mindset, and it is vital to surviving as a parent. When you are your best self, so is your child.” Be sure to check out her simple 21-Day SelfCare Challenge—you’re worth it! Another article you don’t want to miss is the collaboration between Michael A. Wynne, LICSW, MTS and Maria F. Gilmour, PhD, BCBA-D, called Utilizing Structure to Ground and Enliven the New Year. Learn ways to create stability in your life by tapping into the most basic forms of grounding by focusing on creating structure in our routines.
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This issue is overflowing with inspiring articles, including an article on the importance of authentic casting written by Roxanna Lewis, director of MANDY’S VOICE: a groundbreaking film about a nonverbal autistic girl featuring a diverse cast of neurodivergent individuals and advocates. We also feature articles this month centered on valuable topics such as how to identify and manage depression, ways to help a child with autism better connect with their peers, and tips for traveling with special needs children. In addition, there are articles on understanding the difference between IEP goals and IEP objectives, managing a cystic fibrosis diagnosis, supporting communication through music, the value of art therapy, how to boost the senses using simple sensory activities, plus so much more! Our team is honored to introduce advocate Nicole Moehring to our fantastic group of columnists this year. Nicole is the founder of Voices of Change 2018 (VOC18) and is the mother of two children, one of whom has exceptional needs. Be sure to read her column called Safety Goals with Nicole as she shares her personal journey and educates readers on ways to reduce the risk of abuse. It has been a privilege to work closely with hundreds of contributors this past year. As I have mentioned previously, establishing Exceptional Needs Today was a dream because it allowed me to combine my passions—advocacy and the power of the written word. It has been gratifying to work with readers and our sponsors to promote awareness and acceptance. As many of you know, Exceptional Needs Today was honored to receive the Gold Award from Mom’s Choice Awards for our work in 2021. To extend our thanks, we have selected 24 writers for special recognition. In addition, we have chosen five books published (or republished) in 2021 for special acknowledgment. Let’s do our best to take care of ourselves and one another in the coming year! Best,
Amy KD Tobik
Editor-in-Chief, Exceptional Needs Today Publisher, Lone Heron Publishing
PLEASE JOIN OUR EXCEPTIONAL COMMUNITY
PARENTAL SUPPORT
Unlocking the Joy Within Your Exceptional Needs Family By Amy Nielsen
EVERY FAMILY HAS ITS OWN SET OF CHALLENGES, PARTICULARLY FAMILIES IMPACTED BY EXCEPTIONAL NEEDS, BUT EXPERIENCING JOY SHOULD NOT BE ONE OF THEM. AND JOY CAN TRANSCEND ANY DIFFICULTY BECAUSE IT COMES FROM WITHIN, NOT FROM OUTSIDE SOURCES LIKE OUR CIRCUMSTANCES. IT IS A FEELING MORE RELATED TO MINDSET THAN CONDITION.
M
y autistic son, Barclay, is six years old. Like most parents, I remember the day he got the diagnosis like it was yesterday. It felt dark, scary, and overwhelming. Sound familiar? But three years later, I can honestly say those feelings are mostly gone. And while I know our family faces challenges our friends with neurotypical children do not, the joy within our home is equally fulfilling—and some days, maybe even more so! So how can exceptional needs families elevate their joy while dealing with the struggles of their daily lives? I’m confident the
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PARENTAL SUPPORT
following tips will help you unlock more joy within your family!
Unlock YOUR joy The first step to unlocking your family’s joy is to unlock your own. The key is to focus more on what you can control than what you can’t. While this may sound like good advice, it often ends up being difficult and overwhelming in practice; the challenges seem always present no matter how hard we try. But by taking a top-down approach and realizing the joy for your family starts with you, the shift can be easier to make than you realize. Accept and embrace your child’s truth for you As parents of children with exceptional needs, we often feel a sense of urgency to help them overcome the obstacles in their lives. But why? Motive matters here. Are we trying to “fix” them or help them access their own joy? Neurodiversity is a normal part of the human genome. Once we accept those with exceptional needs aren’t broken and that their conditions are a part of who they are, we can replace those feelings of urgency with a sense of peace. Build a solid support system My go-to answer for all things exceptional needs is to build a support system of people around you who are as dedicated to your family’s success as you are. This includes family, friends inside and outside the exceptional needs community, the professionals you trust, nonprofit and volunteer organizations, and more. When I first started this unique parenting journey, I knew no one who had an autistic child. So, I made several friends who did. Having a strong support system means you will have others doing the heavy emotional lifting with you, freeing you up for more joy. Self-care every day A caregiver’s self-care is essential to mindset, and again, joy is all about mindset. This means taking time, effort, and intention with your self-care routine. A bath ten minutes before bed, which is my favorite self-care, may seem like a small thing, but it could be just what you need at the end of a demanding day. With today’s busy lifestyles, it sometimes feels impossible to make space in our schedules, but allowing even just a few minutes each day will go a long way in increasing the joy in your life.
Unlock your CHILD’S joy Your child is looking to you for direction in how to access their joy. They need your help. The key to unlocking your child’s joy is to focus on what you can do to help your child experience it. It’s active and intentional, and fortunately, easy to do. Accept and embrace your child’s truth for them Just as accepting and embracing your child’s truth has benefits for your mindset, it also does for theirs. If they believe you think something is wrong with them, this may contribute to
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low self-esteem or depression. While it is essential they have a clear understanding of their unique needs to self-advocate, they also need to know there is nothing wrong with them. They are exactly who they were meant to be. Create an environment that sets them up for success Rather than expecting your child to function in your environment, create a space that fits their unique needs by removing barriers. For example, if your child struggles to remain seated with the family for an entire meal, allow them to get up and move around between bites or buy a smaller table and chair where they feel more comfortable. For our family, one thing we did was move all breakable objects within my son’s reach. Now, if he has a meltdown, there is nothing he can break, and in our world, that’s huge. Allow them to develop interests and strengths Imagine waking up every morning and having to focus on what you struggled with or had no interest in for the entire day. Unfortunately, this is a reality for many of our exceptional needs children. Now, imagine if your child had as much time to do whatever made them happy. For us, this means we play a lot of Mario Brothers, read a ton of Mo Willems, and
PARENTAL SUPPORT
play Monster Tag. Strengths and interests are superpowers, so give your child as much time as possible to develop those.
Unlock your FAMILY’S joy The key to unlocking your family’s joy is all about redefining a new normal. Too often, we try forcing a peg into an ill-fitting hole, knowing no matter how hard this person or thing is pushed, it will never fit perfectly. And in doing so, you could damage yourself as well as whatever is being forced onto said peg. Let go of what doesn’t work and embrace the magic you’ll find. Learn when to say no Before you say yes to an invitation to a birthday party or a play date, ask yourself, “Am I confident this will be a successful outing for my family?” For us, that means we don’t go to outdoor venues that are not gated. We pass on invitations to friends’ homes that have large pets. Then we replace what we say no to with something to which we can say yes. If we get invited to a birthday party at a venue we know won’t be safe for Barclay, we instead take him to a place that is. So, every time you must say no, create a yes, even if that yes is just a fun board game with the family.
we’ve embraced helped Barclay overcome his reluctance to shower and brush his teeth. We have what we call a “battle” right before. Each of us picks a fictional character, and we have a timed play battle on the crash pad. He goes right to the shower after. Joy in the journey As difficult as some days are, I always remind myself: this is just a moment in time. It will pass, and along with it, I must let the heightened emotion pass as well so the peace and joy can flood back in. I hope the suggestions here have given you ideas and, more importantly, permission to make decisions that elevate your exceptional needs family to a whole new level of joy! “Joy does not simply happen to us. We have to choose joy and keep choosing it every day.” —Henri J.M. Nouwen
Let go of what doesn’t work; embrace what does Similar to creating an environment for your child that removes barriers, the same concept works here. My son struggles with eating. No matter what, when, where, or how much, it’s always a little of a Gong Show. So, we go with it. He’s had breakfast in the bathtub, lunch on the toilet, and dinner on the floor. Getting food into him is our goal; how we do it is way down the priority list. Remember, regardless of how you were raised or societal expectations, the priority is increasing the joy and atmosphere of your family. Making that happen may look very different, and that’s perfectly okay. Embrace the uniqueness of your family by creating rituals and traditions to spotlight it This is the glue that will bind your family together. When my older neurotypical children were growing up, at Christmas, I’d put the presents under the tree all month as I wrapped them, building anticipation. I quickly found out that would not work with Barclay. So, we shifted, and now it’s a big reveal Christmas morning with no waiting to unwrap necessary. Although a simple example, it’s powerful. Another ritual Amy Nielsen is the owner and creator of the Big Abilities blog and podcast, which is her platform for providing resources and support to the exceptional needs community. She is the author of It Takes a Village: How to Build a Support System for Your Exceptional Needs Family and the picture book Goldilocks and the Three Bears: Understanding Autism Spectrum Disorder, both available through AAPC Publishing. Amy is also a freelance writer for Playground Magazine, The Mighty, Autisable, and a frequent contributor to Exceptional Needs Today. Most importantly, she is married to a super nice Canadian. She is the mother of four amazing children; the youngest is on the autism spectrum. She and her family call Central Florida home. Website: www.bigabilities.com Photo credit: Alessandra Kutz
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Let’s Celebrate Our Exceptional Contributors and Book Authors By Amy KD Tobik
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EXCEPTIONAL ADVOCATE
What a fantastic year it’s been here at Exceptional Needs Today. We want to thank our impressive contributors who have helped shape our publication into a thriving, award-winning magazine. The response from the community has been tremendous. In fact, in September, Exceptional Needs Today received the Gold Award from the prestigious Mom’s Choice Awards honoring excellence. We dedicate our award to everyone who shared their voice with Exceptional Needs Today in 2021. In celebration, we have created unique awards in a variety of categories. In addition, we have selected five books to receive recognition for their value to the community. Please help us congratulate the following people selected for this special recognition for 2021.
Top Psychologist
Top Community Support
Chris Abildgaard, EdD, NCSP, LPC, NCC
Meshell Baylor, MHS
Dr. Chris Abildgaard is the owner and director of the Social Learning Center, LLC, located in Cheshire, CT. He has been in private practice for over 13 years. Chris earned his Doctorate of Education in School Psychology from Loyola University Chicago. He is a nationally certified school psychologist, a board-certified national counselor, and a licensed professional counselor with a specialization in autism spectrum disorders. Chris also holds a graduate certificate from the University of Massachusetts Lowell in Behavioral Interventions in Autism. Chris is an adjunct professor at the University of St. Joseph’s and the University of Hartford, both located in West Hartford, Connecticut. Website: https://www.sociallearningcenter.org/
Top Education Policy Writer Toby Tomlinson Baker, PhD Toby Tomlinson Baker earned her PhD at Pepperdine University in leadership and Global Policy. She is a lecturer at California State University-Los Angeles (CSULA) and she teaches special education with the Los Angeles Unified School District. Dr. Baker was awarded the Harrison Sylvester Award for her research by the Learning Disability Association (LDA) and has been CHADD’s 2018 Educator of the Year.
Meshell Baylor is a mother of four children—two of whom are on the spectrum. She serves her community as a social worker and community advocate within the Los Angeles area. She has a bachelor’s degree in Human Services from Springfield College and a Master of Science in Human and Social Services. Meshell continues to volunteer and give within her community while serving the special needs community. Website: http://meshellbaylor.wixsite.com/website
Top Autism Advocate Jeanetta Bryant Jeanetta Bryant is the founder and executive director of Abilities Workshop, Inc. She is dedicated to helping special needs families find answers and children impacted by a special needs diagnosis be their best. Jeanetta is an author, developer, and advocate. As a mom of two children, one with ASD, she finds no greater joy than watching them develop and achieve their dreams. Her interests include family time at home or a theme park, college football, and making memories. Website: https://www.abilitiesworkshop.com/
Website: https://tobytomlinsonbaker.net/
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EXCEPTIONAL ADVOCATE
Top College Advisor Eric Endlich, PhD Dr. Eric Endlich is the founder of Top College Consultants®, which helps students with learning differences or emotional challenges transition to college. An experienced clinical psychologist, Dr. Endlich is on the advisory board of the Asperger/Autism Network, the Learning Differences/Neurodiversity Committee of the Independent Educational Consultants Association, the health advisory board of Personal Best/Oakstone Publishing, and the editorial board of the International Journal of Rehabilitation and Special Education. A frequent conference presenter and regular contributor to blogs such as CollegeXpress, Dr. Endlich has recently co-written a book, Older Autistic Adults, In Their Own Words. He has taught undergraduate and graduate psychology courses at Boston College, Tufts University, Suffolk University, and UMass/Boston. Website: https://www.topcollegeconsultants.com/
Top Board-Certified Behavior Analyst Maria Gilmour, PhD, BCBA-D, LBA Dr. Maria Gilmour is a Board-Certified Behavior Analyst at the doctoral level and a Licensed Behavior Analyst working in Oregon and Washington. Dr. Gilmour has 21 years of experience working in the field of autism, behavior disorders, traumatic brain injury, and ABA. She became the Chief Clinical Officer of Gemiini Systems in 2015 and is the owner and Chief Executive Officer of Wynne Solutions Behavior Services. Websites: www.wynnesolutions.com, www.gemiini.org
Top Speech Therapist Rosemarie Griffin, MA, CCC/SLP BCBA Rosemarie Griffin is an ASHA-certified speech-language pathologist and Board-Certified Behavior Analyst. She divides her time between a public school and her private practice, ABA Speech. She is the founder of ABA Speech, which offers therapy services, courses, consultations, and products geared towards helping autistic students find their voice. Rose is also the host of the Autism Outreach Podcast, a weekly show all about autism and communication. She is a sought-after
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speaker who enjoys connecting with audiences at the local, state, and national levels. Rose is passionate about the mission of ABA Speech, which is to help all students become more independent communicators. Website: https://abaspeech.org/
Top Mental Health Advisor J. Edwards Holt J. Edwards Holt is an American author who has spent a lifetime dealing with mental health problems. Diagnosed with Tourette’s syndrome, anxiety, and depression at 10 years old, and later OCD and ADHD at 13, success has never come easy for him. After spending most of elementary and middle school isolated, in and out of therapy, Holt managed to turn things around and graduated high school as Valedictorian, later on going on to graduate college with a major in education. Even today, as a successful author, Holt still copes with symptoms of his illnesses. Because of this, he is a continued advocate for those struggling with mental health, incorporating bits and pieces of his own experiences in his written works. Website: jedwardsholt.com
Top Autism Educator Raun K. Kaufman Raun K. Kaufman is the author of the book Autism Breakthrough: The Groundbreaking Method That Has Helped Families All Over the World and the former CEO of the Autism Treatment Center of America®. An international lecturer and graduate of Brown University with a degree in Biomedical Ethics, Raun has completed lecture tours throughout Asia, Europe, and the U.S. He has written articles featured in journals such as The Autism File and Good Autism Practice, books such as Silver Linings and Cutting-Edge Therapies for Autism, and has been interviewed by media such as National Public Radio, BBC Television, Fox News Channel, The London Telegraph, and People magazine. Along with author Kate C. Wilde, he co-created the ACT (Autism Crisis Turnaround) protocol and accompanying courses. As a child, Raun was diagnosed with severe autism and recommended for lifelong institutionalization. Instead, his parents developed The Son-Rise Program®, which enabled their son to completely overcome his challenges. His story was recounted in the best-selling book, Son-Rise: The Miracle Continues and the award-winning NBC-TV movie, Son-Rise: A Miracle of Love. Websites: www.RaunKKaufman.com, www.AutismCrisisTurnaround. com
EXCEPTIONAL ADVOCATE
Top Parenting Solutions Dr. Ronald I. Malcolm, EdD Dr. Ronald I. Malcolm is an Assistant Director of Special Education for a public school district, an Associate Faculty Member with the University of Phoenix, and a Special Graduate Faculty member at the University of Kansas. He has bachelor’s level degrees in English and Special Education. He holds master’s level degrees in Counseling, Special Education, and School Administration. His doctorate degree is from Northern Arizona University in Educational Leadership. His post-graduate degrees are in Positive Behavior Supports and Autism Spectrum Disorders. He has worked for the past 37 years with students between the ages of three to 21 with various health-related concerns in both school and community-based settings.
Top Rights Advocate Pam Mines Pam Mines is a wife, mother, author, entrepreneur, special needs advocate, lawmaker, and low-key comedian. This Virginia native is a passionate champion for families with differently-abled loved ones and the community as a whole. Her passion is largely because her son JP has autism, and she wanted him and others like him to feel supported and seen. Her out loud, out front, and out of control advocacy has raised awareness across the country for this unseen community. She is an out-of-the-box thinker who gets things done with her jovial approach and positive outlook about a very serious subject. She reminds us that having a loved one with special needs is something you’re chosen for, which led to her first children’s book titled God Chose Me. Pam prides herself on being a contributing voice for the special needs community, but not the only voice.
derstanding Autism Spectrum Disorder, both available through AAPC Publishing. Amy is also a freelance writer for Playground Magazine, The Mighty, Autisable, and a frequent contributor to Exceptional Needs Today. Most importantly, she is married to a super nice Canadian. She is the mother of four amazing children; the youngest is on the autism spectrum. She and her family call Central Florida home. Website: www.bigabilities.com
Top Family Therapist Brett J. Novick, MS, LMFT, CSSW Brett J. Novick holds a master’s degree in Family Therapy and post-degree certification in Social Work and Educational Administration. He is currently earning his doctorate in Education. He has worked as a school social worker/counselor for the last 20 years and is an adjunct instructor at Rutgers University and Stockton Universities. Brett has been a licensed marriage and family therapist in private practice, while also serving in community mental health and substance abuse settings over the last two decades. Additionally, he has supervised in family counseling, school counseling, centers for abused and neglected children, and centers for adults and children with developmental disabilities. He has also been a licensed foster parent. Brett has authored eight educational, children’s, and self-help books. He has written for several national educational, parenting, and mental health magazines as well. He has presented nationally on the subjects of child behavior, education, and mental health. He has been humbled with awards for his work in education—the NJEA Martin Luther King Jr. Human and Civil Rights Award as well as the N.J. Council on Developmental Disabilities Educator of the Year Award, the N.J. State Governor’s Office Jefferson Award for Public Service, and District’s Teacher of the Year and Ocean County Counselor of the Year. Website: https://www.brettsbooks.com/
Website: www.PamMines.com
Top Autism Expert Top Exceptional Needs Writer
Annette Nuñez, PhD, LMFT
Amy Nielsen
Annette Nuñez is the founder and director of Breakthrough Interventions, LLC and Potential Health, LLC. She is a licensed psychotherapist and has worked with children with ASD and other related disorders for over 28 years. As part of her doctorate work at the University of Denver, Dr. Nuñez developed the Children’s Social Competence Scale (CSCS). The CSCS is an early intervention eval-
Amy Nielsen is the owner and creator of the Big Abilities blog and podcast, which is her platform for providing resources and support to the exceptional needs community. She is the author of It Takes a Village: How to Build a Support System for Your Exceptional Needs Family and the picture book Goldilocks and the Three Bears: Un-
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EXCEPTIONAL ADVOCATE
uation tool that measures social competency in young children. She served as the Program Director for Connect Us, a non-profit organization that helps children cultivate positive relationships through facilitated play. Her research interests include the mainstreaming and socialization of children with high functioning autism. Dr. Nuñez co-wrote and self-published the Friendship Is… book. She conducts many seminars both nationally and internationally and has consulted with many schools in China, and supervises the therapists at Breakthrough Interventions in South Africa. Her most recent project is starting Potential Health, LLC—a hemp line that offers various products to children with autism and their caretakers to help with sleep and relieve the stress of day-today living. Dr. Nuñez has been featured in the Huffington Post, San Francisco Chronicle, NPR, ABC, CBS, NBC, FOX News, Forbes, The Jenny McCarthy Show, and The Today Show. Websites: http://www.btinterventions.com, https://www.breakingthroughautism.com, https://potentialhealthproducts.com/
Top Financial Planner Ryan F. Platt, MBA, CHFC, CHSNC, CFBS Ryan F. Platt is a registered representative of and offers securities, investment advisory, and financial planning through MML Investors Services, LLC, Member SIPC. A Special Needs Plan is not a subsidiary or affiliate of MML Investors Services, LLC, or its affiliated companies. This article is not a recommendation or endorsement of any products. Website: http://www.aspecialneedsplan.com
Top IEP Consultant Carly Quinlan
Top Behavioral Consultant Connie Persike, MS, CCC/ SLP Connie Persike is a highly experienced speech-language pathologist and educational consultant. As founder of C.P. Consulting, Connie brings over 20 years of experience in educational settings to provide insight, guidance, coaching, and support to school districts, agencies, and families across Wisconsin needing expert direction in working with children. In addition to running her business, Connie has taught part-time at the University of Wisconsin-Madison as a Clinical Associate Professor in the Communication Sciences & Disorders Department. Connie is a member of the American Speech Hearing Association, the Association of Supervision and Curriculum Development, and the Autism Society of Wisconsin. Connie holds a certificate from Edgewood College’s Instructional Coaching Credential Program, The Positive Educator Certification Program through the Flourishing Center, and Butler University’s Applied Educational Neuroscience© Certificate Program. Furthermore, she is a published writer for Autism Parenting Magazine and Exceptional Needs Today magazine. Connie resides in Waunakee, WI with her husband and daughter. During her free time, she enjoys spending time with her family, reading, landscaping, decorating, and cooking. Website: https://cpconsulting.us/
Carly Quinlan is the owner of IEP Consulting, LLC. With eight years of experience as a special education teacher and IEP case manager, and as a sibling of a brother with Down syndrome and autism, she has a unique perspective and knowledge base of the world of IEPs. She has experience and training in Applied Behavior Analysis, Behavior Intervention Plans, advocacy training in special education law as a non-lawyer advocate, as well as ongoing professional development. With many years of experience on both sides of an IEP table and “behind the scenes” of special education services, she can help you navigate the IEP process, ensuring your concerns are heard and addressed through negotiations with the school team. Services include phone consultations, report review, letter writing, meeting preparation assistance, and IEP meeting participation. Website: https://iepconsultingllc.blogspot.com
Top Autism Podcast Tosha D. Rollins Tosha D. Rollins is a Licensed Professional Counselor, Autism Spectrum Disorder Clinical Specialist, and autism parent. Her experience includes more than 22 years in the autism arena. Tosha also offers autism coaching and consulting outside of her private practice, Rollins Counseling, LLC. Tosha also created the Autism in Action Podcast, which is dedicated to helping families find resources, services, and support. Special interests include advocating for children, special needs families, and autism professional development. Website: autisminactionpodcast.com
14 | Exceptional Needs Today | Issue 7
EXCEPTIONAL ADVOCATE
Top Community News Ron Sandison Ron Sandison works full-time in the medical field and is a professor of theology at Destiny School of Ministry. He is an advisory board member of Autism Society Faith Initiative of Autism Society of America, the Art of Autism, and the Els Center of Excellence. Ron has a Master of Divinity from Oral Roberts University and is the author of A Parent’s Guide to Autism: Practical Advice, Biblical Wisdom published by Charisma House, and Thought, Choice, Action. He has memorized over 15,000 Scriptures, including 22 complete books of the New Testament. Ron speaks at over 70 events a year, including 20 plus education conferences. Ron and his wife, Kristen, reside in Rochester Hills, MI, with their daughter, Makayla. Website: http://www.spectruminclusion.com
Top Young Voice Noah Seback Noah Seback is a nonspeaking autistic who has gained the ability to communicate effectively through spelling on a letterboard or keyboard with the support of a communication regulation partner. He is a rising self-advocate who is passionate about promoting communication rights for fellow autistics who don’t speak or speak minimally or unreliably. His lived experience of 16 years as a nonspeaker without a voice has provided him with the ultimate training and expertise. Website: thisismenoah.com
Top Mental Health Counselor Lori Stottler, LMHC Lori Stottler is a clinician at CIP Brevard and has worked in the mental health counseling field since 2014. The College Internship Program (CIP) is a comprehensive transition program that has specialized in the educational needs of teens and young adults with autism and learning differences for over 35 years, offering year-round and summer transition programs across the U.S. since 1984. Website: www.cipworldwide.org
Top Therapeutic Designer Amy Wagenfeld, PhD, OTR/L, SCEM, EDAC, FAOTA Amy Wagenfeld is Principal of Amy Wagenfeld|Design and Lecturer in the Post-Professional Occupational Therapy Doctoral Program at Boston University. She is a Fellow of the American Occupational Therapy Association and the Center for Health Systems and Design at Texas A&M University and holds evidence-based design accreditation and certification (EDAC) through the Center for Health Design, specialty certification in environmental modifications (SCEM) through the American Occupational Therapy Association, and certification in healthcare garden design through the Chicago Botanical Garden. Amy presents and publishes widely on topics relating access to nature and is co-author of the award-winning book Therapeutic Gardens: Design for Healing Spaces published by Timber Press. When not designing gardens, researching, or developing garden and nature programs, Amy can be found happily digging in the dirt. Website: www.amywagenfelddesign.com
Top Special Education Solutions Catherine Whitcher, Med Catherine Whitcher is the founder of the Master IEP Coach® Mentorship + Network and has been building IEPs for the Real World for over 20 years. With experience as a special education teacher and special needs sibling, Catherine knows the importance of helping a child reach their potential both inside and outside of the classroom. She is the host of the Special Education Inner Circle Podcast and currently leads Master IEP Coaches® nationwide in creating collaborative and effective IEP meetings. Her proven methods of building better IEPs have helped thousands of parents and schools work together to prepare students for further education, employment, and independent living. Websites: www.catherinewhitcher.com, www.masterIEPcoach.com
Exceptional Needs Today | Issue 7 | 15
EXCEPTIONAL ADVOCATE
Top Advice Columnist Kate C. Wilde Kate C. Wilde has spent the past 30 years working with children and adults on the autism spectrum and their families, as well as with therapists, educators, and schools. She is the author of the acclaimed books, Autistic Logistics: A Parent’s Guide-
to Tackling Bedtime, Toilet Training, Tantrums, Hitting, and Other Everyday Challenges and The Autism Language Launcher: A Parent’s Guide to Helping Your Child Turn Sounds and Words into Simple Conversations, and is renowned for the well-attended courses she teaches throughout the U.S., Europe, and Asia. Her YouTube autism quick tip videos, delivered with her trademark infectious enthusiasm, have garnered a following worldwide. Websites: https://www.katecwilde.com/, https://www.autismcrisisturnaround.com/
2021 Book Awards Navigating Autism: 9 Mindsets for Helping Kids on the Spectrum By Temple Grandin, PhD, Debra Moore, PhD https://www.amazon.com/ NavigatingAutism-Mindsets-HelpingSpectrum/dp/0393714845
Life After Lockdown: Resetting Perceptions of Autism Edited by Rebecca Silva, Ruth Prystash, René DeLoss, Carol Burmeister
You Were Made for This— Finding Courage and Intuition for Raising a Child with Autism By Rebecca Jeffreys, Illustrated by Jeffery Hoover https://www.sproutinghealthyfamilies. com/my-book
Autistic Logistics, Second Edition By Kate C Wilde https://www.amazon.com/AutisticLogistics-Tackling-Meltdowns-Challenges/ dp/1787757498/ref=pd_lpo_1?pd_rd_ i=1787757498&psc=1
https://www.amazon.com/LifeAfterLockdown-Resetting-Perceptions/ dp/1956110038
The Spectrum Girl’s Survival Toolkit: The Workbook for Autistic Girls By Siena Castellon https://www.amazon.com/SpectrumGirls-Survival-Toolkit/dp/194219742X
Amy KD Tobik is the editor-in-chief of Exceptional Needs Today magazine. She coordinates and directs an impressive group of doctors, therapists, and writers to provide expert guidance and support for special needs families. A graduate of Sweet Briar College in VA, Amy’s experience includes more than 30 years of writing/editing monthly magazines, newspapers, technical documents/manuals, books, and websites. Her special interests include advocating for children, special needs families, and education. Amy is the CEO of Lone Heron Publishing, LLC. Website: exceptionalneedstoday.com
16 | Exceptional Needs Today | Issue 7
PARENTAL SUPPORT
Kate Makes it Great! PARENTAL SUPPORT
How Can I Help My Child with ASD Better Connect with His Peers? By Kate C. Wilde
Exceptional Needs Today | Issue 7 | 17
PARENTAL SUPPORT
HAPPY 2022 EVERYONE! I AM EXCITED TO START THIS YEAR NOT ONLY BECAUSE I GET TO BE WITH ALL OF YOU FABULOUS READERS AND WRITE FOR THIS AWESOME MAGAZINE, BUT BECAUSE, FOR ME, 22 IS A VERY SPECIAL NUMBER. THE NUMBER 22 REMINDS ME OF A DEAR, DEAR FRIEND AND COLLEAGUE, WILLIAM JOHN HOGAN, WHO PASSED AWAY SIX YEARS AGO. HE WAS A GIFTED SON-RISE PROGRAM® TEACHER AND A TRUE FRIEND TO ME. IN HONOR OF HIS WORK WITH THOUSANDS OF FAMILIES AND CHILDREN ON THE SPECTRUM, I DEDICATE THIS ARTICLE AND THIS YEAR TO HIM.
I
look forward to supporting you, reading your questions, and learning the stories from your life. Please keep them coming in. The new year brings a lot of pressure to make resolutions, change, and embark on our bucket lists or unrealized dreams. For me, I have only one wish for all of you walking your journeys with your exceptional loved ones—to know today and each day of 2022 that: • • •
Whatever happened or did not happen, it was enough. Whatever you did or did not do, you did enough. When at last you turn off the light and rest your weary head against the pillow, you can kindly say to yourself, “Today I was enough.”
With that sentiment in the forefront of my mind, I chose the question below to answer in detail because I think it will help all of us in the exceptional needs community, not just those on the spectrum. Elsa from Sweden asks: “My seven-year-old son on the spectrum seems really interested in playing with his peers. However, when he is around children either at a park or a birthday party, or his cousins at home, he will just watch from the sidelines. This confuses me because he is highly verbal and easily talks to me. How do I help him take that next step to connect?” Hi Elsa, thanks for writing into the magazine—I love to get questions from all parts of the world! I have observed many children and adults on the spectrum doing just this. One thing you might notice is he most likely does this with adults as well as children. You may observe it more with children because children can be very unpredictable, much more so than adults. That can make children much harder to approach and talk to than adults. You ask how you can help him connect more with his peers. You can do that by strengthening his ability to physically participate in an interaction. By physically participate, I mean his ability to take part in a game with an action consistently. Examples of this are:
18 | Exceptional Needs Today | Issue 7
• • • • • •
Taking turns in a card game by picking up or putting down a card Pretending to blow out candles on a cake Drawing part of a picture with someone Pretending to be driving a car by moving his hands as if he is holding a steering wheel Handing you a toy Holding a bubble stick and blowing a bubble
Taking physical action interactively in a game can be challenging for most children and adults on the spectrum, but for our more highly verbal children, it can be easily overlooked
PARENTAL SUPPORT
as a challenge. I say overlooked because when you are busy talking to one another, it is easy to miss that talking is your primary way to connect. When most neurotypical seven-yearolds get together they talk, of course, but a large part of their connection with one another is through physical participation games. Similarly, for children or adults who have yet to speak, we can become, understandably, hyper-focused on asking them to speak, skipping the simple act of helping them physically participate in an interaction. Elsa, as you think about this you may think, “Well, he can already do the things mentioned above.” It is not about whether he is capable of them; it is about the consistency and speed with which he is able to show up and physically participate. His peers can participate at a speed that usually leaves neurodivergent children out of the play arena. Focus on helping him do it more of the time. First, help him raise his consistency and speed of participation with just you. He may then get the confidence to do it with his peers. You can do that by: 1. Celebrating all the times he does physically participate in an interaction Celebrate all the little times he does this throughout your day together. If he hands you a chip bag to open or gives you his school backpack, that is him physically engaging in an interaction—celebrate him! Tell him how much you love it when he gives you things. If he acts out something like a scene from a movie or pretends to be an animal, let him know how awesome he is at it. These celebrations will highlight what you want him to do more of, and it will help him gain confidence in his ability to participate in the interaction.
Focus on the fun of the action. Fun is the reason he will get involved in the game and be inspired to come back for more. Show him how fun the game is by throwing yourself into it with everything you’ve got. In the Son-Rise Program® we call this “Entertaining.” Think of it like you are a movie he is watching. A movie does not ask him, you, or anybody to participate. It is just something you enjoy watching. Be his “living movie” for at least two minutes. If he is still looking at you after those two minutes, ask him to physically participate in the game you just presented. Taking the ideas listed above, you could: • • • •
Give him the ball and ask him to drop it onto the racket Pick up a piece of pretend food to feed the puppet Hand him the jump rope to try skipping Ask him to play a turn for his favorite stuffed animal
If he does what you ask, give him a big, sweet celebration. Let him know how wonderful it is when he plays this way with you. If he does not do it, that is okay. Do not push him. If he is still looking at you, continue to play and ask again a little bit later.
2. Being a model for him When you are chatting together, add in a physical element. For example, if he is excited to talk to you about dinosaurs, become a dinosaur as you talk about them. If you are talking about a character from a story, get a book about that character and open up a page to a picture of the character. If you are talking about going to the store tomorrow, or a time you have already been, pretend to get in a car and drive there. You are making the conversation come alive by acting it out in some way. 3. Initiate a physical game instead of a conversation When he is making eye contact with you (which is often an indication that he may be available to interact for a little bit), instead of asking him a question or connecting with him through words, just start a physical game. For example, you could: • Pick up bat and ball and start bouncing the ball on the bat • Get a puppet and pretend it is eating some of the other stuffed animals or eating pretend food and spitting it out • Pick up a jump rope and start skipping • Get a board game and start setting it up Exceptional Needs Today | Issue 7 | 19
PARENTAL SUPPORT
Once he gets stronger at physically participating in a game with you, you can invite one of his cousins over for a very short practice play date. By short, I meant just 30 minutes. Talk to your son about a game you can all play together. Give him a choice of three you know he likes and can easily do. It might be a choice between working on a puzzle, playing catch, or playing his favorite board game. When the cousin comes over, you spend 15 minutes playing the chosen game, then 15 minutes having a snack and chatting. That’s it. I am a great fan of doing play dates in shorts bursts so they can end on a note of success. Sometimes when things are going well, we tend to extend the time, and then we push past what is comfortable for our children. This creates stress. Once the 30-minute play dates are easy for your son, you can extend them to 45 minutes, then an hour, and so forth. Don’t forget to send in your questions; you can do so here at submissions@exceptionalneedstoday.com. I wish you a wonderful start to your year! Have the best time playing with and enjoying your beautiful loved ones. See you in March! Kate C. Wilde has spent the past 30 years working with children and adults on the autism spectrum and their families, as well as with therapists, educators, and schools. She is the author of the acclaimed books, Autistic Logistics: A Parent’s Guide to Tackling Bedtime, Toilet Training, Tantrums, Hitting, and Other Everyday Challenges and The Autism Language Launcher: A Parent’s
Guide to Helping Your Child Turn Sounds and Words into Simple Conversations, and is renowned for the well-attended courses she teaches throughout the US, Europe, and Asia. Her YouTube autism quick tip videos, delivered with her trademark infectious enthusiasm, have garnered a following worldwide. Websites: https://www.katecwilde.com/, https://www.autismcrisisturnaround.com/
IN SEARCH OF PERSONALIZED EXPERT GUIDANCE? Send us your parenting questions, woes, concerns, and tricky situations with your beautiful, exceptional children. This includes all you amazing professionals out there. Kate will answer up to five questions in every issue in her Kate Makes it Great! column. Kate has worked with children and adults on the spectrum for the past 30 years. She has clocked more than 20,000 therapy hours and has worked with well over 1,500 different children. Whatever you are facing today, Kate has most likely experienced it in some form. Her answers will be practical, doable, inspiring, optimistic, down to earth, and real. Together there is nothing we cannot face with a little joy and love. Submit your questions to submissions@exceptionalneedstoday. com
Have you ever wished there was a manual for parenting children on the autism spectrum? Autistic Logistics provides just that, offering clear, precise, step-by-step advice on everything you want to know, including: How to toilet train your child without pushing or pressuring How to get your child to sleep in their own bed and through the night What to do when your child misbehaves / lashes out, hits or bites How to introduce new foods without a fight "I am a paediatrician who works with children who have autism. I am also a mother of a child with autism... I speak from the most authentic place I can find when I say that this book is GOLD!" -- Wendy Edwards, Pediatrician
TO PURCHASE ON AMAZON
https://www.amazon.com/Autistic-Logistics-Tackling-Meltdowns-Challenges/
20 | Exceptional Needs Today | Issue 7
LEARNING STRATEGIES
Empowering Exceptional Kids as They Grow
By Dr. Chris Abildgaard, EdD, NCSP, LPC, NCC
AS WE TURN THE CALENDAR YEAR ONE MORE PAGE AND OUR HOPE FOR A BETTER AND BRIGHTER NEW YEAR IS FRESH IN OUR MIND, LET’S LOOK TO THE FUTURE AND NOT HOPE FOR A BETTER YEAR; INSTEAD, LET’S SET ONE GOAL TO ATTAIN OVER THE NEXT 12 MONTHS. AS WE MOVE INTO THIS YEAR, MAYBE THAT GOAL WILL BE ABOUT LOSING THOSE EXTRA 15 POUNDS. MAYBE IT WILL BE ABOUT MAKING MORE TIME FOR SELF-CARE. MAYBE IT WILL BE ABOUT SAVING UP FOR THAT NEW KITCHEN.
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hose are all wonderful and valid things to strive for as we come off another very unsettling year. However, what about our kids? What do we hope they do or achieve this year? Is it better grades? Is it more friends? Is it getting their driver’s license, so we don’t have to
drive them around everywhere anymore? Once again, all excellent and valid hopes and dreams for our kids in 2022. I would like to challenge us all to add one other goal to our plates (and to the plates of our kids) this year. That is the goal of becoming heard, the goal of becoming seen, the goal of feeling empowered.
Exceptional Needs Today | Issue 7 | 21
LEARNING STRATEGIES
In the world we live in today, we need to process what those events starting in March 2020 did to us as people when our lives as a nation changed forever. This reality of a pandemic that we are now living through is emotionally earth-shattering. As we moved through the month, we in the mental health field saw a significant increase in people suffering from anxiety, depression, emotional regulation/behavioral outbursts, etc. And those were just the adults. The trickle-down effect to all of that landed on our kids and young people of this county. In a recent paper, Kang, et al. (2020) discussed that a multitude of risk factors brought on by the pandemic and our new way of having to live can bring about a heightened level of anxiety in children (and adults) and has been documented in research on previous pandemics. This pandemic is only one variable that has impacted our lives over the past year and a half. Since March 2020, we as a nation have justly experienced a new cry for social justice, educational equity, and change to address systematic racism in our country. We as adults, as parents, as teachers, mental health providers, coaches, etc., have a duty to have those courageous conversations with others as a means of addressing where we are as a country, as a person, and as a child living through this time. Let’s begin 2022 with that small yet powerful goal of working harder to help our young people feel heard, seen, and empowered. So, what does it mean to empower someone? We can help people feel empowered when they feel seen. To “see” someone, even a child, means not to just visually see them with your eyes, but to see them as an individual who has stock in this world, in your society, in your classroom, in your family. You see their beauty, their strengths, those barriers they may have to overcome, and you allow that person to feel seen in a variety of settings. It starts from a very young age, where we as caregivers can help toddlers feel empowered by allowing them to feel the power of some independence. This can be as simple as helping them to make a choice between two items to play with or allowing them to hold your hand and walk out of their preschool classroom without you carrying them. This idea of letting them walk out, holding your hand, is a huge step in the empowerment process. As much as we as parents want to run to our kids after preschool, pick them up, and carry them out because we’ve missed them, it doesn’t help the child’s independent growth. In some situations, is it easier for us as the adult to scoop them up and carry them out? Sure, we all have been there. However, that idea of “scooping and saving” is not fostering a feeling of empowerment. Rather, it’s encouraging a reliance on someone to help solve our emotional needs. This task of allowing children to
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work through tough situations is hard and time-consuming. However, it can help promote a feeling of empowerment and independence that will help to shape their emotional stamina for years to come. As our youth get older and enter their elementary, middle, and high school years, this idea of empowerment will change and grow based on their developmental level. Teachers and parents, invite young people to ask tough questions. Allow them to ask the “why.” Take the time to process through the directive or expectation so they as a young person can feel heard and more at ease with the task which was asked of them to do. Offer them observations of what you are seeing their interests are, of what you are seeing them feel, or concerns you
LEARNING STRATEGIES
may have about how they are acting. Train your brain to make statements such as, “I noticed that you…” or “When I heard you say ____ it made me feel a little worried,” or “You looked happy when ____.” What these statements offer is a chance for conversation. The power of feeling like, “Wow, Dad wants to talk to me about this and not just punish me,” is massive. Am I suggesting we take away all rules and boundaries our young people need to be aware of and following? No, not at all. However, modeling how to have that conversation will help our young people feel seen and therefore empowered as a person. Maybe these conversations start at home with caregivers or in the classroom with their teachers. In time, the goal would be for our young community members to start having those same conversations with other same-aged peers. So, as 2022 kicks off, let’s think more about how to help our young people feel safe and experience some control over their anxious feelings. Let’s not be afraid to have the conversation that those feelings are okay and valid. Let’s model for them how to walk and stand on their own and feel they have people in their lives who see them. If we as a nation can kick off 2022 with the idea of helping young people feel secure and empowered, we can move in a positive direction to help improve the mental health of the people of this country. Wishing you all the best in 2022. References:
Kang, Y. Q., Lim, T., Ragen, E. S., Tan, M. Y., & Aishworiya, R. (2020). Managing Children’s Anxiety During COVID-19 Pandemic: Strategies
for Providers and Caregivers. Frontiers in psychiatry, 11, 552823. https://doi.org/10.3389/fpsyt.2020.552823. Courageous Conversations: Courageous Conversation - Providing Training, Coaching and Consulting for Millions of Racial Equity Leaders Around the World
Dr. Chris Abildgaard, EdD, NCSP, LPC, NCC, is the owner and director of the Social Learning Center, LLC, located in Cheshire, CT. He has been in private practice for over 13 years. Chris earned his Doctorate of Education in School Psychology from Loyola University Chicago. He is a nationally certified school psychologist, a board certified national counselor, and a licensed professional counselor with a specialization in autism spectrum disorders. Chris also holds a graduate certificate from the University of Massachusetts Lowell in Behavioral Interventions in Autism. Chris is an adjunct professor at the University of St. Joseph’s and the University of Hartford, both located in West Hartford, Connecticut. Website: https://www.sociallearningcenter.org/ Facebook: https://www.facebook.com/SocialLearningCenter Twitter: https://twitter.com/SLC545 LinkedIn: https://www.linkedin.com/in/chrisabildgaardslc/
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Exceptional Needs Today | Issue 7 | 23
BEHAVIORAL HEALTH
Bringing Functional Behavioral Assessment Into the 21st Century By Connie Persike, MS, CCC/SLP
What is a Functional Behavioral Assessment (FBA)? The traditional definition of FBA is “a process for understanding an individual’s problem behavior, identifying events that predict and maintain it, and using this information to design behavior support plans to minimize problem behaviors and maximize functional, prosocial behavior (McIntosh & Av-Gay, 2007, p.38).” However, as we
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learn more and more about relational and neuroscience, neurodiversity, trauma-informed practices, and behaviors that interfere with learning, we must do better, which means shifting the traditional definition! As Maya Angelou said, “Do the best you can until you know better. Then when you know better, do better.” Now is the time. We know better! We must update the FBA process to bring it current with the paradigm shift that is occurring
BEHAVIORAL HEALTH
across the nation in regards to discipline and behavior! This is essential for the kids we serve. Our explanation guides our intervention. How we respond to behaviors that interfere with learning depends on what we think is causing them. Our mindset and the language we choose to use matter. They are directly correlated to our students’ experience and outcomes (Rosenthal, et al., 1992; Boroditsky, 2011).
The history of the FBA The history of functional behavioral assessments can be traced back to B.F. Skinner’s basic research on behavioral analysis in 1938. It is deeply rooted in applied behavioral analysis (ABA). Studies from the 1940s and 1950s laid the foundation for behaviorism, which essentially means that when looking at behaviors we are primarily concerned with observable behaviors versus sensations, thoughts, and emotions, and that human behavior can be explained in terms of operant conditioning, a simple stimulus-response reaction, which comes from environmental stimulation such as incentives, rewards, and punishments. In the 1960s, research began to identify functions of challenging behaviors. These initially consisted of positive reinforcement (i.e., attention), negative reinforcement (i.e., escape and avoidance), and autonomic reinforcement (i.e., reinforcement that is produced automatically such as self-stimulatory behaviors). Later in the 1980s, functions began to expand to include tangible reinforcement (i.e., positive reinforcement from items such as food, toys, or activities) and a need for control (D.R. Dixon et al., 2012). Often, when an FBA is completed today, the same underlying premise and functions exist. Haven’t we evolved since the 1940s? Since the 1980s? Isn’t educational research constantly progressing? Why has this practice remained virtually the same over the years? For the second year in a row, the United States Government has reported that ABA does not work (The Department of Defense Comprehensive Autism Care Demonstration Annual Report, 2019, 2020). Functional behavioral assessments are deeply rooted in ABA. Why has this practice, for the most part, remained stagnant over the years?
When is an FBA warranted? Some would argue to get rid of the process. However, under The Individuals with Disabilities Education Act (IDEA) an FBA is required for a student with a disability as part of a Manifestation Determination unless an FBA was conducted prior to a placement change for disciplinary reasons. In addition, IDEA requires students be evaluated in all areas related to their disability, behavior included. Lastly, best practices would indicate an assessment should be conducted if a team is struggling to understand the root cause of behaviors as well as what supports, accommodations, modifications, and interventions will help address behavioral difficulties.
The paradigm shift More and more leaders in the field are speaking out against behaviorism and ABA. There is a paradigm shift occurring, moving us away from behaviorism and towards relational and neuroscience approaches that accept and welcome neurodiversity and focus on trauma-informed practices. There are several reasons behaviorism isn’t what’s best for students. Behaviors are not as simple as what we observe on the outside without any consideration for the sensations our students may be experiencing, their thoughts, and their emotions! If only behaviors were as simple as a cause-effect experience that is only surface deep. Remember our mindset and the language we use guide our interventions. Therefore, if we believe student behavior is a simple reaction to a stimulus to achieve a function of attention, avoidance, autonomic reinforcement, and/or tangible items, we are left with very few options for interventions and supports. What we are left with is ignoring students or withholding our attention, providing rewards and incentives for compliance, assigning punishments for non-compliance, and dangling “carrots” to incentivize desired behaviors. Here is what I know about those practices. Ignoring students and withholding our attention from them when they are engaging in behaviors is not aligned with what we know about the brain. Our brains are social organs. We need connection! We are wired to connect, and we find safety in others (Lieberman, 2013). By sitting with a student while they are escalated, we can share our calm and help them feel safe. This is how self-regulation develops: from many, many experiences of co-regulation with a safe and secure adult (Delahooke, 2019). Not only does it not align with relational and neuroscience, but it also sends a message of conditional care. That we only care for students when they are complying with our rules or behaving in a way we deem appropriate. Rather, the message we want our students to receive is that everyone experiences fluctuations of their nervous system which will directly impact their behaviors and that we accept and care for them in both the good and difficult times. The evidence of the influence of teacher-student relationships is a positive one, with the effect size of 0.52 (Hattie, 2018). If we are ignoring our students and withdrawing our attention when the going gets rough, we will struggle to have positive teacher-student relationships. This is also concerning because it’s more challenging for our students to learn from someone they don’t like (Consalvo & Maloch, 2015). Positive relationships between teachers and students need to be a priority, not rewards, incentives, and punishments. If we accept the hypothesis that a student’s behavior is working for the student to avoid something they don’t want to do, we are going to try and force compliance by offering tokens, rewards, and dangling incentives in front of the child. However, as Dr. Ross Greene states, “Kids do well if they can,” and “Doing well is always preferable to
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BEHAVIORAL HEALTH
not doing well.” Therefore, we need to dig a layer deeper and ask what lagging skills may be contributing to the why behind students’ avoidance. Why is the student trying to avoid what we want them to do? We all avoid or escape something that is too hard for us, too boring, or that causes us to feel uncomfortable or distressed (Greene, 2014). Avoidance can also be related to perfectionism and executive functioning disorders. We must dig deeper beyond avoidance. Without a deeper analysis, we will have difficulty moving beyond rewards and punishments. Lagging skills must be a focus to ensure long-term change. When demands exceed students’ abilities, maladaptive responses occur. Teaching will change the responses to those experiences, not rewards, incentives, and punishments. As we have learned more about neuroscience and our autonomic nervous system, we have realized that behaviors can be bottom-up—a response to the neuroception of threat. Our brain is constantly scanning the environment for cues of safety. This is done at a subconscious level. It is an autonomic response that keeps us safe by activating the fight/flight/freeze system. During moments of distress, our autonomic nervous system takes over to help keep us safe. We respond by either fighting, fleeing, or freezing. These responses are not conscious. They are autonomic—a system instinctively activated to keep us safe. In addition, many students have faulty neuroception such as students who have experienced trauma, have anxiety, or have sensory processing disorders. They are hard-wired to be on alert for danger. These students may respond as if they are in danger when they are, in actuality, safe. This is not a conscious response and cannot be changed by rewards and punishments. We need to teach students about their internal sensations, their feelings, and their autonomic nervous system. Our autonomic nervous system is a powerful strength, and it will help us if we listen and become in tune to our sensations. These skills and our awareness will ensure long-term change, not rewards, incentives, and punishments! Developmental differences can also cause behaviors that interfere with learning. Differences such as early sensory sensitivities increase the likelihood of self-regulation difficulties, which in turn increases the likelihood of behavioral issues (Delahooke, 2019). Students who are non-speaking or who have limited verbal abilities may use unconventional means to communicate their wants and needs. These differences in abilities may cause an increase in behavioral issues. Students need us to understand their sensory differences and preferences, provide treatment, and welcome their individual needs. They need us to create alternative communication systems and teach them conventional ways to communicate. These interventions and supports will change behavior for the long-term, not rewards, incentives, and punishments.
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In this paradigm shift, behaviors are the observable responses to both external and internal stimuli (Delahooke, 2019). Students’ sensations, thoughts, and feelings matter. The observable behaviors are just the tip of the iceberg. We need to look deeper and pay attention to what lies beneath the water line. We must stop assuming behaviors are working for students and that outdated functions exist. Students do well if they can. Lagging skills, stress responses, and individual differences are the root causes of unwanted behaviors. As the world becomes more neurodiverse, we need to welcome and accept individual differences. We need to work to make our classrooms more conducive to the needs of all students, not just the ones society has coined neurotypical. If our environments are not adaptable and accepting to the needs of all learners, the environment may contribute to behaviors that interfere with learning for our neurodiverse learners. As Thomas Armstrong says, “Just as we accept that individual species of plants have specific environmental needs (e.g., sun, soil, water), we need to understand that neurodiverse children require unique ecological nutrients in order to blossom.” Lastly, school discipline and behaviors that interfere with learning start with us, the adults in the room. We, as educators, need to be aware of our own autonomic nervous system states and triggers. Are we sending cues of safety or cues of danger (Delahooke, 2019; Desautels, 2020)? Behavioral response is a connected experience. What we do, how we look, and how we feel impact the student and what the student does, how they look, and how they feel impacts us.
How to align your FBA with current relational and neuroscience, neurodiversity, and trauma-informed education Functional behavioral assessments are not the problem. The problem is the belief that behaviors are only responses to external stimuli and functions such as attention-seeking and avoidance work for students and can be changed with rewards, incentives, and punishments. Rather than asking how the behavior is working for the student, we need to ask what is the behavior communicating to us? So how do we start? How do we turn philosophy into practice? First, we change our definition of behavior to include responses to both internal and external stimuli. We use our relationships with students to help us gather information about sensations they may be experiencing as well as thoughts and emotions they are having. We look at behaviors through a trauma-informed and neurodiverse lens to help us determine if our student behaviors may be bottom-up or if individual differences are being welcomed and accepted within our educational environments. We dig deep into lagging skills to determine what skill deficits may be contributing to the behavior. We use our keen
BEHAVIORAL HEALTH
observational skills to clearly state what a child looks like as they move through their cycle of distress, from safe and secure to adaptive protection through action, so that we can offer calming supports and co-regulation as soon as dysregulation begins. Research has demonstrated how
the language we use changes our thinking (Boroditsky, 2011). Our language matters. It’s time for a change! Let’s create new functions of behavior. Let’s shift our mindset in the following manner:
Now is the time to reframe the question, “What consequences will change the behavior now?” to “What experiences will change the behavior long-term?” (Desautels, 2020). To do this, we need to understand our students’ perception of their experiences within their schools, communities, and homes. As Dr. Tina-Payne Bryson says, “The difference between adversity making us fragile vs. making us resilient is having someone show up for us and walk with us through it.” Let’s remember that our response to behavior is a connected experience. We, as educators or caregivers, need to be aware of our own sensations, thoughts, and feelings. We need to ask ourselves if we are sending cues of safety or cues of danger as we are responding to our students. Emotions are contagious so our student’s emotions will impact us and our emotions will impact our students (Sigal et al., 2018). Awareness of this is the first step.
References:
Now is the time for change! Let’s get rid of practices that were developed decades ago! The world of FBAs needs to embrace the paradigm shift that’s occurring today! When we do so, our students and schools will benefit.
McIntosh, K., & Av-Gay, H. (2007). Implications of current research on the use of functional behavior assessment and behavior support planning in school systems. International Journal Of Behavioral Consultation And Therapy, 3(1), 38-52. Rosenthal, Robert; Jacobson, Lenore (1992). Pygmalion in the classroom: teacher expectations and pupils’ intellectual development (Newly expanded ed.). Bancyfelin, Carmarthen, Wales: Crown House Pub Boroditsky, L. (2011). How Language Shapes Thought. Scientific American, 304(2), 62-65. doi: 10.1038/scientificamerican0211-62 Dixon, D; Vogel, T; Tarbox, J. (2012). A Brief History of Functional 2 Analysis and Applied Behavior. J.L. Matson (Ed..). Functional Assessment for Challenging Behaviors, Autism and Child Psychopathology Series, Springer. The Department of Defense Comprehensive Autism Care Demonstration Annual Report, 2019, 2020) Lieberman, M. (2015). Social. Oxford (GB): Oxford University Press. Hattie Ranking: 252 Influences And Effect Sizes Related To Student Achievement Source: www.visiblelearningplus.com/content/250-influences-student-achievement (Retrieved 28 March 2018 / PDF)
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Consalvo, A. & Maloch, B. (2015). Keeping the teacher at arm’s length: Student resistance in writing conferences in two high school classrooms. Journal of Classroom Interaction, 50(2). 120-132. Greene, R. W. (2014). Lost at school: Why our kids with behavioral challenges are falling through the cracks and how we can help them. New York: Scribner. Delahooke, M. (2019). Beyond behaviors. Eau Claire: PESI Publishing. Desautels., L. (2020). Connections over compliance. Deadwood: Wyatt-McKenzie Publishing. Sigal G. Barsade, Constantinos G.V. Coutifaris, Julianna Pillemer, Emotional contagion in organizational life, Research in Organizational Behavior, Volume 38, 2018 Connie Persike is currently in the process of creating a web-based application for her FBA & BIP forms that are aligned with this new paradigm shift! For more information on the forms or aligning your FBA process with current relational and neuroscience, neurodiversity, and trauma-informed education, contact info@cpconsulting.us.
Connie Persike, MS, CCC/SLP is a highly experienced Speech Language Pathologist and Educational Consultant. As founder of CP Consulting, she brings 20+ years of experience in educational settings to provide insight, guidance, coaching, and support to school districts, agencies, and families across Wisconsin — and throughout the country — who need expert direction in working with children. Put simply: she helps students succeed by working with school systems, parents and/or agencies who have yet to identify the underlying “why” behind unsolved behavioral challenges. She helps identify paths forward that benefit both the student and the staff. No two children are alike - she collaborates with all parties to find an individualized solution that helps everyone thrive. CP Consulting works from the guiding mission that Connection + Collaboration = Endless Possibilities. Website: https://cpconsulting.us/
THE VANGUARD SCHOOL Guided Learning through Individualized Spectrums of Growth Leadership
Community
Integrity
Empathy
www.vanguardschool.org admissions@vanguardschool.org
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Resilience
MY WORD
The Exceptional Needs Journey:
Lessons Learned That Changed Our Lives By Sandy Petrovic, RN, BSN and David Petrovic, BA, MAT
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MY WORD
MY YOUNG-ADULT AUTISTIC SON AND I HAVE LEARNED MANY LESSONS THAT HAVE CHANGED OUR LIFE TRAJECTORIES AND LEFT US FULFILLED AND HAPPY. A DIAGNOSIS—NO MATTER WHAT IT IS—AFFECTS THE ENTIRE FAMILY AND ITS DYNAMICS, SO WORKING ON EVERYONE’S NEEDS HELPS THE OUTCOMES OF EACH MEMBER AS WELL AS THE FUNCTIONING UNIT. COORDINATING ALL OF THIS IS MONUMENTAL, BUT IS WORTH THE EFFORT. Here are some key lessons David and I each learned that eased our journey and may translate to yours:
Sandy: Reflections, parent to parent 1. No matter how busy, find time for yourself and what you enjoy 2. Utilize sitters to allow focused attention on each child and what’s important to them • The same with your partner or spouse • Each relationship must be nourished separately, along with the family supporting and enjoying each other as a whole 3. Enlist the help of siblings, but not so much as to foster resentment 4. Educate the siblings on the differences and needs of their brother or sister • Understanding is vital for empathy and acceptance
10. Network with other parents and professionals at schools and conferences to learn about ideas, events, programs, or expanded insights into your child (and sibling considerations) 11. Seek a social niche for your child • Involve them in activities that bring joy, incite passion, hone strengths, and build confidence 12. Teach your child organization, and work on their executive functioning skills, reinforcing the efforts and suggestions of professionals 13. Talk to your child about their feelings and struggles; ask and then listen 14. Recognize even small victories with praise and reinforcement 15. There is joy in raising a child with differences!
5. Find your village of support people: family, trusted sitters, friends, professionals, and other parents who can relate to your needs and provide respite through venting, suggestions, or exchange of childcare • Advocate for what you and your child need
16. Do not create worry over what you cannot control—just do your best
6. Pad extra time into readying the special needs child for activities or outings to decrease stress and impatience
1. Try not to use any diagnosis as an excuse not to give your very best effort
7. Plan ahead. Prepare and transition your child for every new experience, change, and developmental stage
2. Asking for help is the smartest and bravest thing one can possibly do in order to achieve your goals • Take it upon yourself to seek immediate clarification if something does not make sense • Advocate for your needs!
8. Prepare for the future but take it one day at a time • Do not overwhelm yourself by currently looking at every life challenge you imagine awaits your child. For example, if your child is in preschool, plan ahead for kindergarten or first grade, but don’t yet stress about college or employment 9. Volunteer to help in your child’s classroom or school activities • Gain an objective view of your child’s interactions, progress, strengths, and needs • Witness techniques that the professionals use to intervene and interact with your child to increase your arsenal of effective responses
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David: Reflections from a fellow exceptional
3. Learn as much as you can about your difference in order to educate yourself and others 4. When it comes to setting goals, take small steps to get to the eventual big dreams 5. Try to carry out appropriate behaviors and attitudes with those around you • It’s not changing who you are, but it’s modifying behaviors according to your surroundings
MY WORD
11. Seek out educational and professional opportunities to help you hone your skills • You may be able to make a fulfilling and successful living out of them 12. Recognize when it is time to step away from work, on any level, so that you can be replenished to carry on with your duties to your maximum potential • Indulge in “breaks” like going for a walk, going to the gym, or even playfully surfing the web pertaining to interests that bring you fulfillment 13. Just as you want to be accepted, accept others • Embrace all forms of diversity 6. Don’t compare your life and/or accomplishments to others; everyone is on their own path 7. Despite perceived notions, no one has a perfect (struggle-free) life! 8. Be considerate of your family members’ needs and feelings, just as they are of yours 9. Try not to dwell on any personal or social mishaps. Every day is a learning experience and a chance to grow as an individual 10. Students: Do not abandon who you are at the expense of trying to fit in with a certain group of people for a temporary amount of time • Whatever your passions or interests are, pursue and embrace them!
14. Know that you have purpose! Despite being nonverbal at age three, David is now a masters-prepared middle school teacher, an author, and a national speaker. He’s also given a TEDx presentation. We co-authored Expect a Miracle: Understanding and Living with Autism to share our separate perspectives through every developmental stage from toddlerhood through young adulthood. Written about our challenges and victories from experiences with autism, Tourette’s, and anxiety, the book is nonetheless relevant for persons, families, and professionals who experience or work with any differences or hardships. The struggles, strategies, and tips are relatable and enlightening for everyone. They include topics such as bullying, academic success, social dilemmas, sensory differences, college preparation/ success, and acclimation to the workforce. The title Expect a Miracle does not refer to David’s outcome, as one might infer. Only after reading the book will the title choice become clear!
Sandy Petrovic, RN, BSN, is a tutor/instructional advisor at a college academic support center for students with learning differences. She is also a public speaker alongside her son when requested or fitting for the audience. A co-chair for three years, Sandy is now a member of the executive conference committee for the Milestones National Autism Conference, held annually in Cleveland, Ohio. David Petrovic, BA, MAT, is a national speaker, including his presentation of a TEDx Talk in 2016. He is a happily employed middle school teacher certified in language arts and social studies. He recently earned a Master of Arts in Theology (Pastoral Theology Specialization) with aspirations to teach high school, and he is considering a vocation with the Catholic clergy. David enjoys acting and theatre. David experienced many COVID19-induced challenges and anxieties during both lockdown and post-reintegration. To learn from the perspectives and advice of more than 40 authors—including our own joint chapter—consider reading Life After Lockdown: Resetting Perceptions of Autism. Website: https://aspergermiracles.com/ Facebook: https://www.facebook.com/d.s.petro Book: Life After Lockdown: Resetting Perceptions of Autism
Exceptional Needs Today | Issue 7 | 31
YOU ARE NOT ALONE ON THIS JOURNEY JOIN US F O R F R EE Our mission is to educate, support, and energize families, caregivers, educators, and professionals while preparing all families for a healthy future.
EXCEPTIONAL NEEDS TODAY
e x ce pti on a l ne e d stod a y. c o m
PARENTAL SUPPORT
Secrets I Wish I’d Known About Traveling with My Autistic Son By Markeisha Hall
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PARENTAL SUPPORT
Our family of five has been traveling ever since the kids were able to hop on a plane—we had to hold them up for their passport pictures. But in the summer of 2016, we began to foster our youngest son. This will sound crazy, but it is true. The first thing I asked the social worker was, “Will he be able to go with us on vacation in June?” I could tell this was a question she was not used to getting. June rolled around, and we were traveling now as a family of six. He was not diagnosed with autism at that time; although we saw autistic traits, we chalked it up to him adjusting to our home and his age. Let’s just say we learned a LOT from that trip. We were not prepared for his reaction to the new place, schedule, food, plane trip, nothing. There were meltdowns, sleepless nights, staring from other guests at the resort. To be fair, I have to let you know my husband and I are both special education teachers, though I’m not in the classroom anymore, so we did not feel too overwhelmed by the behaviors on the trip. But had we known more prior to leaving, we would definitely have prepared more effectively. Later that year my son was diagnosed with autism. I want you to know we did not stop traveling. As of 2018, we officially became a family, and in the summer of 2021, our youngest son successfully went ziplining! Now, I know first-hand that traveling with kids can be stressful; add in a disability, and that can keep many families from attempting to venture into the unknown of a new place. But with the right preparations, it can be an unforgettable travel memory for your family. Here are some tips on planning, packing, selecting the right accommodations, and much more to make your family trip more enjoyable and stress-free! 1. Know before you go Find out all you can about the destination. We have found that YouTube is a great resource to really see the ins and outs of a place. 2. Find an accessible travel agent Travel agencies that specialize in Accessible Travel are the best way to plan your trip without hassle. They will book your flights, search for suitable accommodation, make a list of places you would like to visit, and arrange transport at your destination. 3. Get an accessibility card The International Board of Credentialing and Continuing Education Standards (IBCCES) created the digital IBCCES Accessibility Card (IAC) as a free resource for individuals with cognitive disorders or physical impairments who need special accommodations or services at certified attractions. 4. Prepare for flights Since 2011, TSA and Wings for Autism® have partnered to provide families with children on the autism spectrum
34 | Exceptional Needs Today | Issue 7
with a realistic security checkpoint practice run, complete with getting a boarding pass, going through security, boarding a plane, taxing, deplaning, and leaving the airport. Check to see if your local airport participates before your vacation. When booking, use the following Special Service Request (SSR) code, DPNA (disabled passenger with intellectual or developmental disability needing assistance). 5. Have a point of contact Ask ahead of time who will be your point of contact when you arrive and during your stay. Now, I know some of you are looking at this and saying it is not possible for your family. But I want you to know that all travel experiences do not have to be at a tropical destination far away from home. So, with that in mind, here are some tips for “traveling” in your or close to your own home. 1. Look into Able Eyes The mission of Able Eyes is to provide state-of-the-art visual experiences to children and adults with disabilities through virtual tours. 2. Plan a local trip Start with a short overnight trip somewhere close to your home. 3. Create a travel party Bring the destination to your home with the sounds, food, and decor of your dream vacation.
PARENTAL SUPPORT
Your child’s disability does not have to stop you, them, or your family from experiencing life. You just need the right accommodations, modifications, and consideration to make it happen.
Sources
https://autismtravel.com/ https://www.ableeyes.org/ https://thearc.org/our-initiatives/travel/
Now…go get that passport stamped! Markeisha Hall is an IEP Coach, Certified Autism Travel Professional, Parent Empowerment Partner, and CEO of Hallegacy, LLC. She is married to her college sweetheart and has four beautiful children. After 11 dedicated years of facilitating over two dozen IEP meetings annually as a member of the Early Childhood Assessment Team, Markeisha knew she needed to be a Special Education Teacher and advocate to help parents be more impactful members at the table. In 2018, Markeisha became more intimate with this reality when her family adopted their youngest son. During the adoption process, he was diagnosed with autism. Markeisha is now bringing her IEP process mastery and special education expertise into consulting services to help parents take the lead on their students’ educational roadmap, create more inclusive educational and recreational experiences, and shift from awareness to empowered action. Websites: https://expert-writer-2426.ck.page/, https://markeishahall.ck.page/products/my-first-iep-guide, https://markeishahall.ck.page/ products/top-travel-tips-for-families-with-special-, https://iep-consults-markeisha-hall.as.me/IEPsupport Podcast: https://markeishahallpodcast.buzzsprout.com/ Facebook: https://www.facebook.com/hallmarkeisha Instagram: https://www.instagram.com/markeisha_hall/
Exceptional Needs Today | Issue 7 | 35
EXCEPTIONAL BOOKS
Life After Lockdown Resetting Perceptions of Autism Experiencing a global pandemic and lockdown was challenging for everyone, but the challenges experienced by the neurodiverse community are unique. This book is a powerful resource for people with autism, as well as those who are neurotypical, in dealing with the stress and anxiety of social situations, going back into the community, and returning to school and work. Written by over 40 well-known experts and autistic
individuals, this book will provide you with practical strategies for navigating a post-pandemic world, while also inspiring you with memorable first-person accounts of experiencing a pandemic through the lens of autism. This book provides insights that will benefit us all for years to come, as well as providing a keepsake of a truly unforgettable moment in history.
TO PURCHASE: https://www.amazon.com/Life-After-Lockdown-Resetting-Perceptions/dp/1956110038
“Life After Lockdown is brilliant. It is a must-needed resource for everyone who loves or supports an autistic person.” ~Brenda Smith Myles, PhD Contributors include: Dr. Temple Grandin Dr. Tony Attwood Dr. Stephen Shore Dr. Kerry Magro
Dr. JÂcqûeline Fede Dr. Amy Laurent Dr. Peter Vermeulen Larry Bissonnette
Elizabeth Sautter Lillian Vasquez Kelly Londenberg Sandy and David Petrovic
. . . plus other autistic adults and children, parents and professionals
Editor/Authors Rebecca Silva, Ruth Prystash, René DeLoss, and Carol Burmeister have dedicated their combined careers to improving the lives of students with disabilities and their families as teachers, school administrators, professional development specialists, university instructors, and authors. As active members of local community organizations, they have worked to improve the lives of neurodiverse individuals of all ages—in state institutions, non-public schools, county programs, and district classes. They believe that all individuals deserve the chance to have a rich and meaningful life.
36 | Exceptional Needs Today | Issue 7 ADVERTISEMENT
STAYING FIT AND HEALTHY
Nature Notes Outside Adventures, Part One:
Boosting the Senses Using Simple Sensory Activities By Amy Wagenfeld, PhD, OTR/L, SCEM, EDAC, FAOTA
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STAYING FIT AND HEALTHY
SENSATION, THE FIVE BASIC SENSES, AND A NICE DOSE OF NATURE. YUMMY! THAT IS WHAT WE ARE GOING TO TALK ABOUT IN THIS INSTALLMENT OF NATURE NOTES. IN PART TWO, I WILL DIP INTO SENSORY INTEGRATION, BUT FOR THIS ISSUE, WE WILL FOCUS ON THE FIVE BASIC SENSES INDEPENDENTLY.
L
et’s get going by defining the five senses and what they do. According to the Merriam Webster online dictionary, sensation is “a mental process (such as seeing, hearing, or smelling) resulting from the immediate external stimulation of a sense organ” (www. merriam-webster.com, 2020). Basically, we take in cues from the environment, wherever we are, process it in our brain, and then act on it. For instance, we put a piece of bread in the toaster and, if you are me, tend to leave it in a bit too long, so of course, it burns. The result is it smells pretty unpleasant in our home for a few hours! This is a simple explanation of sensation. The five basic senses are: smell (olfactory), taste (gustatory), hearing (auditory), sight (visual), and touch (tactile). Sensation happens throughout every moment of our days.
Smell The olfactory system enables us to smell. While our sense of smell is not as sharp as a dog, humans can detect one trillion smells, which is pretty amazing. Smell is a highly protective sense. Think of this: the smell of smoke evokes a fight or flight response to alert us to be aware of danger. We smell smoke and take action to find the source or remove ourselves from the situation.
equated with toxicity. However, please be aware that horseradish is not toxic! Umami, which is mentioned a lot in the “foodie world,” is referred to as the savory or delicious taste.
Hearing The auditory system enables us to hear. Being able to hear is protective and plays a large role in communication. Please note I am not saying that individuals who are deaf or hard of hearing cannot communicate, as that is not the case at all. This discussion is merely about what the auditory system’s function is. The auditory system contains two parts: the peripheral system and the central system. The peripheral system is made up of the outer, middle, and inner ear as well as the auditory nerve, which carries information from the cochlea in the inner ear to the brain. The central system contains auditory pathways in the brain stem and the auditory cortex of the brain (https://www.lobe.ca/en/blog/protect-my-hearing/Auditory-system-works).
Sight The visual system starts with our eyes. The visual system is made up of the eye, optic nerve, optic chiasm, optic tract, lateral geniculate nucleus (LGN), optic radiation, visual cortex, and visual association cortex (https://emedicine.medscape. com/article/1948576-overview). By forming images of one’s surroundings through light, the visual system allows any living creature to perceive their environment (https://courses. lumenlearning.com/wmopen-psychology/chapter/outcome-vision/).
Touch
Smell and taste are closely related. For many, the smell and taste of freshly baked chocolate chip cookies are tantalizing. The sense of smell begins at the back of the nose with a strip of neurons called the olfactory epithelium (brainfacts.org). Once the sensory receptors are activated in the olfactory epithelium, an electrical signal is sent to the olfactory bulb located in the base of the forebrain and then on to other brain areas tasked to identify a particular smell.
The tactile system is responsible for interpreting touch, pressure, vibration, temperature, and pain information through the skin and then sending this information to the brain for processing. Because the skin covers the entire body, it is the largest sensory organ. There are touch receptors everywhere! One place on our bodies with a lot of touch receptors is behind our knees. There are two layers of skin; the outermost is the epidermis, while the thick layer beneath it is the dermis. This thick layer of skin is where the touch receptors are found.
Taste
Senses in Nature
The gustatory system is located in the mouth and tongue, both of which have specialized cells that send messages to the brain to decode five specific tastes. We can identify five taste sensations: sweet (e.g., chocolate), sour (e.g., lemon), salty (e.g., chips), bitter (e.g., horseradish), and umami (e.g., miso). The bitter sensation is protective, as bitterness is sometimes
With a brief introduction to the five basic senses, let’s apply this knowledge to nature-based activities. Below are a few simple ways to connect nature with the senses.
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STAYING FIT AND HEALTHY
Sense
Nature Engagement
Smell
Go outside or open a window after it rains. What do you smell?
Taste
Without looking, identify whether a food is sweet (e.g., a piece of mango) or sour (a slice of lime). Use foods your child tolerates and is safe for them to eat. Increase the complexity by adding in salty foods.
Hearing
Listen. What bird sounds can you hear? What do they sound like?
Sight
Find three to five items that are green. Are the shades of green the same or different? Which is the lightest green and which is the darkest green?
Touch
Without looking, identify whether an object is smooth (e.g., a river rock), rough (e.g., a pinecone), warm (e.g., a stone that has been exposed to the sun), or cold (e.g., an ice cube).
Below is a bonus activity. Select one object found in nature. Think of ways the five basic senses can be activated when interacting with this object. My example is a basil plant. Smell: When you rub a leaf between your fingers, what does is smell like? Does it smell like pizza or lemon? Note: there are many varieties of basil. Consider planting several in your garden or container
Taste: Pinch off a small piece of the leaf and put it on your tongue.
See: Are the leaves and the stem the same shade of green? Is the top and bottom of the leaf the same color?
Hear: Do the leaves make a sound when the wind blows through them?
Touch: Pluck off a leaf and rub it with your thumb and index finger. How does it feel?
Until next time, when we will dive deeper into sensory integration and nature, I hope you spend as much time in or looking at nature as you and your family can. Enjoy its wonders and beauty! Amy Wagenfeld, PhD, OTR/L, SCEM, EDAC, FAOTA, is Principal of Amy Wagenfeld | Design and Lecturer in the Post-Professional Occupational Therapy Doctoral Program at Boston University. She is a Fellow of the American Occupational Therapy Association and the Center for Health Systems and Design at Texas A&M University and holds evidence-based design accreditation and certification (EDAC) through the Center for Health Design, specialty certification in environmental modifications (SCEM) through the American Occupational Therapy Association, and certification in healthcare garden design through the Chicago Botanical Garden. Amy presents and publishes widely on topics relating access to nature and is co-author of the award-winning book Therapeutic Gardens: Design for Healing Spaces published by Timber Press. When not designing gardens, researching, or developing garden and nature programs, Amy can be found happily digging in the dirt. Website: www.amywagenfelddesign.com Blog: http://workjournal.org/nurture-through-nature Email: amy@amywagenfelddesign.com
Exceptional Needs Today | Issue 7 | 39
ANXIETY MANAGEMENT
Utilizing Structure to Ground and Enliven the New Year By Michael A. Wynne, LICSW, MTS and Maria F. Gilmour, PhD, BCBA-D
AS IF HAVING A FAMILY MEMBER WITH SPECIAL NEEDS IS NOT CHALLENGING ENOUGH, THE COVID-19 HEALTH CRISIS CONTINUES TO ADD UNWELCOME LAYERS OF WORRY. PARENTS MUST CONSIDER NAVIGATING CONTACTS WITH PLAYMATES, MAKING VACCINE DECISIONS, DEALING WITH THE DONNING OF MASKS, AND ASSESSING HOW TO EFFECTIVELY PROTECT THE HEALTH OF FAMILY MEMBERS, INCLUDING AGING GRANDPARENTS. PARENTS AND FAMILY MEMBERS OF CHILDREN WITH DEVELOPMENTAL EXCEPTIONALITIES EXPERIENCE MORE COMPLICATED DIMENSIONS OF THESE AND OTHER CHALLENGES AS COMPARED TO RAISING CHILDREN WHO ARE TYPICALLY DEVELOPING.
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ANXIETY MANAGEMENT
With a new year upon us, we have an opportunity to shift into a new gear that can be both grounding and enlivening. We need to honestly ask ourselves a few questions: •
What does taking care of yourself truly look like?
•
What grounds you?
•
What enlivens you?
Consider this an opportunity to take a step back and consider what really fills your cup. This is somewhat of a cliché, but it’s repeated a lot because there is truth to it: when we take better care of ourselves, we can more effectively take care of others. After a very stressful year in 2021, we encourage our clients to use this new year as an opportunity to really slow down, give yourself and those around you some more slack, and recognize that, ultimately, we are in this thing together. From the initial heightened fear and anxiety felt during the start of the lockdown in March of 2020, to today, almost two years later, we have learned to somehow cope and even normalize living in a pandemic. We have come a long way, and adapting to such dramatic changes is certainly not easy. How about we take a collective breath to recognize that we are still here? Things might look quite a bit different working and schooling from home and dealing with such profound functional changes and emotional challenges, but we are still standing and fighting. By recognizing the weight of our experience, we validate it, and from this place of awareness, we can ultimately do more and be more. By using grounding techniques that work to maintain a healthier nervous system and emotional state in you, your children are better able to manage internal states, emotions, and outward behaviors. An effective way to lower the stress temperature at home is to build structure into the home life. We use the mnemonic Structure Zone to remind us that we can restructure the home environment to make life easier for our kids and ourselves. Providing a Structure Zone is not hard work. Think of it as a superpower that you can put into action anytime you choose by creating and maintaining a functional scaffolding that holds the family together. When we were growing up, we experienced different levels of structure in our homes. Some of us had a punctual family dinner every night around the table, while others were more latchkey kids. Some were on sports teams, while others spent their time hanging out at the mall with friends. The good news is you don’t have to use your childhood as the template for raising your own family. You create the environment that is best suited to meet the specific needs of you and your kids. We can take the models that were introduced to us and shape, add to, or completely revamp them to meet the unique needs of our particular family. Where to start? Bring structure into the home life through rhythm. A rhythm is a repeating beat. Examples might include the annual rhythm of birthdays and anniversaries, holidays, the first day of school, Halloween, Thanksgiving, and now New Year’s! Milestones can be markers to track what we have done and perhaps where we might be going, or they can be tools to reinforce positive behaviors and healthier ways of thinking. What about daily rhythms? You can
implement structure into your family’s everyday life by adding the word “time” after an activity. Bedtime and mealtime are examples. What about chore time? Or story time, dog walking time, gardening time, music time, or video learning time? What if every day at four o’clock, after homework or lessons, became cookie time? A few simple ingredients stirred in a bowl plus 15 minutes add structure and connection to the day. When you turn your home environment into a Structure Zone, everyone knows what to expect. Plus, resistance goes down and stress levels naturally reduce. Your kids need parents with even tempers at the helm. Take time to go for a walk, listen to your favorite music, paint, write, read, turn off the news, or lay on the couch. Go easy on yourself and others around you. We are in a challenging moment in history right now, one that we will all discuss for the rest of our lives. In addition to the already complex daily challenges of having a family member with developmental exceptionality, families are impacted by new layers of stress that we have no control over.
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ANXIETY MANAGEMENT
Unfortunately, many of these stresses seem to intersect in the home—where we are all spending more time now than ever. We can more effectively manage the ups and downs (and unknowns) in life through added structure in the home by thoughtfully considering the sources of these stresses and developing methods to shape their influence on the members of our households.
This new year brings with it opportunities to innovate, perhaps by tapping into some of the most basic forms of grounding by focusing on creating structure in our routines. When we root down in the ground and create stability in our lives, especially when the outside world seems to be shaking, our branches can achieve upward growth and reach new heights we never knew possible.
Michael A. Wynne, LICSW, MTS is a licensed independent clinical social worker. He has worked in the field of social work since 2008, with extensive experience as a therapist to address a variety of needs, from art therapy with adolescents and children with developmental disabilities to working with people with varying mental health diagnoses in a community mental health setting as part of a multidisciplinary team of mental health and medical providers. Additionally, Michael consults on research focusing on resilience with individuals with autism and related disorders.
Maria F. Gilmour, PhD, BCBA-D is a behavior analyst with over two and a half decades of experience working in the field of applied behavior analysis and developmental disabilities. Dr. Gilmour is the Chief Clinical Officer of Gemiini Systems, a video modeling company, and President of Wynne Solutions, an ABA agency focusing on providing caregiver education and direct intervention services via telehealth. Dr. Gilmour collaborates with multi-disciplinary team members across the globe to provide clinical supports in a variety of settings while continuing to pursue research in video modeling. Websites: www.wynnesolutions.com, www.wynnesolutions.com, www.gemiini.org YouTube: www.youtube.com/c/MariaGilmour
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Exceptional Needs Today | Issue 7 | 43
EXCEPTIONAL EDUCATION
Let’s Use the Resources We Already Have to Support Exceptional Needs Students By Karen Kaplan THERE IS A GREAT DEAL OF DISCUSSION AROUND THE CHANGE IN INSURANCE COVERAGE FOR BEHAVIOR SPECIALISTS’ ASSISTANTS, IN HOMES AND IN THE CLASSROOM, THESE DAYS. APPARENTLY, SOME INSURANCE COMPANIES ARE NOT SURE THERE IS ENOUGH EVIDENCE TO SUPPORT THE HIGH COST OF THOSE INDIVIDUALS AND WHETHER OR NOT STUDENTS ARE TRULY MAKING ENOUGH PROGRESS.
I
t is also very expensive for schools to recruit and hire enough certified behaviorists to fulfill current needs. There appears to be a lack of certified speech and language therapists and speech and language assistants prepared to work in schools and centers as well. COVID-19’s closures of university programs, school programs, and clinics to complete clinical hours have affected the number prepared to support children, teens, and adults on the spectrum. It also appears the programs for speech therapists take fewer and fewer students each year due to reduced faculty size.
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I happened to see a media site just this past week with 154 open positions for speech therapists. We need to think differently. We need to find a way to support our students’ needs with the resources we already have. I suggest we look at the education and training of our special education teachers. The state requires every classroom have a credentialed teacher. They are a resource we must have. Why are teacher training programs not providing these teachers with the expertise to change behavior, facilitate communica-
EXCEPTIONAL EDUCATION
tion expression and understanding, and provide tools for sensory regulation? Are they only being trained to accommodate the curriculum? Next, I suggest we look at the current paraprofessionals we already hire and place in classrooms, homes, and centers and provide them with the understanding of communication challenges of those they support and train them to use strategies to become a positive communication partner. Why are they not learning about sensory regulation and how to support the visual, auditory, tactile, and olfactory sensitivities of those they support? Those paraprofessionals we have come to depend upon are capable.
that teachers learn how to supervise and train their paraprofessionals. During student teaching, teachers should be required to practice with an experienced teacher and be mentored throughout their credentialling program. Let’s reevaluate the participation of a parent in each student’s educational plan. Why are schools afraid to have the parent observe speech sessions or occupational therapy regularly? How will they learn to implement these strategies at home for consistency if they don’t? If districts are training the paraprofessional, why are they not funded to offer training to the parent, who is a key paraprofessional? Parents were asked to function as the primary paraprofessional during COVID-19.
I believe we are not seeing a resource that is right in front of us: the parent. The parent is the first natural communication partner, shaper of behavior, and co-regulator to whom the child connects. Why doesn’t our education system and Individualized Education Programs (IEP) provide goals and objectives for the family and provide training to the most important resource each student has? The parent will be with the student throughout their life. The education system will only be with them until age 22. If we had seen the parent as a true part of the IEP and provided them with the knowledge, understanding, and, most importantly, the tools and strategies they needed to help their student move towards independence, understand communication, use communication strategies, and self-regulate, there might not have been huge losses in progress during COVID-19. So, how can we integrate the parent and make effective use of our available resources? Let’s encourage our State Department of Education to provide funding to each special education local plan area (SELPA) to provide training and ongoing professional development to each and every paraprofessional hired. This training should include an understanding of each disability’s challenges, learning styles, and strategies to support positive learning. For example, the paraprofessional should learn how to support sensory dysregulation, comprehension, and expression of language as well as how to support positive behavior. Let’s mandate that the Commission on Teacher Credentialling work with each university credentialling program and ensure teachers receive understanding and training in speech and language challenges, becoming a communication partner, and sensory regulation challenges and strategies. Teachers need to understand the principles of behavior management and how to support their individual students. Let’s mandate
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EXCEPTIONAL EDUCATION
Why not put in a training program at our local community colleges to train paraprofessionals? While they are obtaining twoyear degrees, those interested in helping people with special needs can enroll in two or three courses preparing them to offer support in the classroom, home, or center.
needed. Parents may begin to trust that all who support the student are capable. They may then reduce their push to have only the specialist work with their child. The specialist might then become the mentor, trainer, consultant, and advisor, optimizing their time and knowledge.
When paraprofessionals, teachers, and parents are all trained, there could be a reduction in the number of specialist hours
These strategies make use of what we already have.
Karen Kaplan is a native San Franciscan. She completed her bachelor’s and master’s degrees at Arizona State University, Tempe, Arizona, in Speech Pathology and Audiology. Karen minored in Special Education. She obtained her Speech Therapist and Special Education credentials in California. She worked as a speech therapist for both public schools and private schools before opening her own residential and education program for students with autism spectrum disorders. She worked in credential programs at Sacramento State University as well as UC Davis. She spent 20 additional years directing private schools for those with autism and similar learning challenges. She founded a small non-profit, Offerings, which travels globally helping other cultures understand those with developmental challenges. She founded and facilitated an autism lecture series and resource fair for seven years in Northern California. She still facilitates an Autism Awesomeness event yearly, showcasing the strengths and talents of those who live on the spectrum. Karen is currently consulting, helping families, schools, and centers for children, teens, and adults. She has published articles to help bring ideas and strategies to families and professionals, providing hope. Karen authored Reach Me Teach Me in the early ‘70s and went on to publish her second book, On the Yellow Brick Road: My Search for Home and Hope for the Child with Autism, in 2017. Her third book, Typing to Heaven and Back, is not about autism but about having important conversations with those we love. Be sure to connect with Karen—she is always ready to listen and think of the possibilities. Website: www.karenkaplanasd.com
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46 | Exceptional Needs Today | Issue 7
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FINANCIAL FOCUS
Ensuring Your Exceptional Child’s Needs are Always Met with a Financial Plan By Ryan F. Platt, MBA, ChFC, ChSNC, CFBS
2022 IS UPON US. A NEW YEAR IS ACCOMPANIED BY OPTIMISM CLOTHED IN HOPE AND GROWTH. A NEW YEAR ALSO ARRIVES WITH EXPECTATIONS OF IMPROVEMENT FROM THE YEAR BEFORE, WITH ACTIONS ON PROJECTS THAT WERE STARTED OR MAYBE NEVER QUITE GOT OFF THE GROUND. IT IS A TIME TO REFRESH, RENEW, AND ACT. Planning for your child’s future, or refreshing an existing plan, is one of those areas to act on as the new year begins. Let’s take some time to discuss the areas of special needs planning so you can start with a solid foundation. I suggest that special needs planning is 90% financial planning and 10% legal and estate planning. Before I start an argument with this statement, let me explain my reasoning. It is understood that a Special Needs Trust (legal) is critical to a special needs plan because, without that tool in place, your child will lose access to government benefits. For most adults with a disability, government benefits provide financial resources or services that save families from having to devote their family finances to the payment of those services. This fact means your family must financially plan appropriately in order to have the proper financial structure in place to qualify for these benefits. In addition, as many families know, government benefits do not provide for all of an individual’s needs, which means parents must define their child’s lifetime needs, project the cost of those lifetime needs, determine the items government benefits do NOT provide, and then financially plan to ensure those needs are still met. Ensuring your child’s needs are always met intersects with your financial plan because if your financial plan does not work (you run out of money before you run out of life), your child’s plan will not work either. If you run out of money, then no amount of legal planning will make a difference because you need money to fund legal tools, like a Special Needs Trust. A parent’s financial plan linking to a child’s financial plan is critical in the area of generational asset flow. It is imperative to understand the dollar amount an individual with a disability
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will need up and above government benefits so that a proper division of the parents’ estate can be decided. For example, if parents have two children and one child has a disability, after calculating the lifetime needs of an individual with a disability, considering government benefits, and understanding the parents’ financial situation, it may indicate that the child with a disability should receive 65% of the parents’ assets when they die, and the child without a diagnosis receive the remaining. This determination would then need to be included in the parents’ will (part of legal plan), but without that calculation and without that comprehensive financial plan, the typical 50/50 split in wills would be wrong, leaving the child with more support needs without the necessary financial wherewithal. Another area of the financial plan that will be critical to providing enough resources for a child with disability is tax strategy. This type of tax strategy is linked to the parents’ financial plan because the type of accounts the parents use to save their money for their retirement will more than likely be the same accounts that will end up funding their child’s Special Needs Trust (providing for the lifetime support needs of their child). The reason this is important is because of the way taxes work inside of a Special Needs Trust. Certain accounts parents will pass to the Special Needs Trust at their death will be taxed at a relatively high tax rate inside the Special Needs Trust, which means less money will be available for their loved one’s support needs. Financial planning is the foundation for your special needs planning because a well-done and comprehensive plan will provide the direction needed to make appropriate decisions
FINANCIAL FOCUS
in regards to asset splits, accounts to save parents money, proper language utilized in legal documents, beneficiary designations, and preserving the ability to qualify for government benefits. As 2022 begins, search out a special needs financial planner and a special needs attorney to ensure your plan works for your entire family—you and ALL your children. Please feel free to visit www.ASpecialNeedsPlan.com to download our guidebook on special needs planning or contact us to find out how to select professionals that specialize in planning for families like yours!
Contact a financial advisor who specializes in serving families with special needs for more information on how to prepare for the future. The team at A Special Needs Plan is driven by their purpose of Leading Families to Independence through an ongoing, multi-generational plan. We are passionate about families confidently moving forward.
Ryan F. Platt, MBA, ChFC, ChSNC, CFBS, is a registered representative of and offers securities, investment advisory, and financial planning through MML Investors Services, LLC, Member SIPC. A Special Needs Plan isn’t a subsidiary or an affiliate of MML Investors Services, LLC, or its affiliated companies. This article is not a recommendation or endorsement of any products. Website: http://www.aspecialneedsplan.com Phone: 704-326-7910 Location: 101 N. McDowell Street, Suite 120 Charlotte, NC 282
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EXCEPTIONAL EDUCATION
The Difference Between IEP Goals and IEP Objectives By Carly Quinlan 50 | Exceptional Needs Today | Issue 7
EXCEPTIONAL EDUCATION
Individualized Education Programs (IEP) Goals and IEP Objectives are terms that can often get mixed up when planning and discussing student progress. But there is a difference between the two. There is also a difference between IEP objectives and state learning standard objectives. Let’s dig in a bit more with all these terms: •
For example, if the overall goal is for a student to demonstrate increased counting skills to 10 with 80% accuracy, a teacher might break the goal down into smaller objectives or steps, such as: 1.
Rote count to 10, with 80% accuracy
2.
Demonstrate one to one correspondence while counting, assigning one number per object to 10, with 80% accuracy
3.
Connect the number counted to represent “how many” in a set of 10, with 80% accuracy
Notice the performance criteria of 80% accuracy remained the same, but the skill was built upon in a hierarchical sequence. •
•
IEP benchmarks
IEP benchmarks are another way to break down an IEP goal further. Benchmarks set performance level marks that allow for sequential measurement of progress. Benchmarks can break down the performance level of the IEP goal into more numerical steps, such as increasing the percentage accuracy or trials and aligning those expectations to be reached by the reporting periods of progress (i.e., by month, quarter, trimester, semester, etc.). Benchmarks serve as a measurement of how far a student is in the process of achieving the overall goal. This helps determine if the student is on track to meet the goal by the end of the IEP year (which is one of the important factors in determining ESY eligibility and/or eligibility for an increase in service minutes during the IEP year via an amendment). For example, IEP benchmarks for a goal may be broken down into the following increments (pending present level baseline data): •
20% accuracy by Quarter One
•
40% accuracy by Quarter Two
•
60% accuracy by Quarter Three
•
80% accuracy by Quarter Four
SMART format Goals should be written according to the SMART acronym, which stands for: Specific, Measurable, Achievable/Action, Realistic, Timely. The use of shortterm objectives or benchmarks help goals to fit the SMART format. The use of SMART format for IEP goal writing is considered “best practice”.
IEP short-term objectives
Short-term objectives are one way to break down the overall goal into smaller steps or skills, often in a hierarchical order. Once a student accomplishes all the objectives within the goal, they will have achieved the overall goal.
State learning standard objective These are the skill codes used to guide grade-level instruction according to the state’s learning standards. The objectives are the skills within each learning standard. Every IEP goal should be connected back to a state’s learning standard and objective code(s) for that grade level.
IEP annual goal
This is the overall skill the student should achieve by the end of the IEP year (one year from the start date of the IEP, NOT from the start date of the school year). The IEP goal can then be broken down into either short-term objectives or benchmarks as a way to gauge a student’s progress. •
•
•
Best practice Professional measures that are most effective, backed by research or experience
•
Present level statement for an IEP goal This is the statement that identifies how the student is currently functioning and how it impacts their progress in the general education curriculum and/or functional performance. This data determines the starting point of the goal as a baseline. Rate of past progress in the present level statement can help gauge how to write the new goal to make it achievable and realistic as part of SMART format/best practice. For past goals that are unachieved or continue to be built upon from year to year, it is important to include old goal progress data for that skill area. Including past progress in the present level statement greatly assists in the re-writing of a new goal to make it more appropriate.
Based on updates to the federal law of the Individuals With Disabilities Education Act (IDEA), benchmarks or short-term objectives are now only required for “children with disabilities who take alternate assessments aligned to alternate academic achievement standards” (Source: https://sites.ed.gov/idea/).* However, many states, such as Illinois, still require the use of benchmarks and short-term objectives at the state level.* Despite IDEA’s statement on this, it is also considered “best practice” for IEP goals to be written in SMART format: Specific, Measurable, Achievable/Action, Realistic, Timely. One way to do this is by breaking the goal down into specific steps via benchmarks or short-term objectives. If you are presented with draft IEP goals that do not include this, it would be a reasonable request to have the goals re-written to fit more of a SMART format through the use of benchmarks or short-term objectives. Remember, the use of either IEP short-term objectives or benchmarks within IEP goals are going to help you gauge your child’s progress on each IEP goal. No matter what your state’s stance is on the use of these tools, most dedicated professionals would be happy to make this edit for your child if you know to ask! *Disclaimer: I am NOT a lawyer. I am a non-lawyer advocate and therefore do not provide legal advice/services.
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EXCEPTIONAL EDUCATION
Carly Quinlan is the owner of IEP Consulting, LLC. With eight years of experience as a special education teacher and IEP case manager, and as a sibling of a brother with Down syndrome and autism, she has a unique perspective and knowledge base of the world of IEPs. She has experience and training in Applied Behavior Analysis, Behavior Intervention Plans, advocacy training in special education law as a non-lawyer advocate, as well as ongoing professional development. With many years of experience on both sides of an IEP table and “behind the scenes” of special education services, she can help you navigate the IEP process, ensuring your concerns are heard and addressed through negotiations with the school team. Services include phone consultations, report review, letter writing, meeting preparation assistance, and IEP meeting participation. Website: https://iepconsultingllc.blogspot.com Email: IEPconsultingLLC@gmail.com
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LEARNING STRATEGIES
Forming a Bond with Higher Education Faculty as a Student with a Disability is Only a Phone Call Away By Toby Tomlinson Baker, PhD
ARE YOU A STUDENT WITH A DISABILITY AND HEADING TO COLLEGE? ARE YOU A PARENT OF A STUDENT WITH A DISABILITY? HERE IS MY ADVICE BASED ON YEARS OF EXPERIENCE AND ORIGINAL RESEARCH FINDINGS.
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LEARNING STRATEGIES
commodations (never say “my disability”). Make sure they know what accommodations you will need within the first two weeks of the scheduled classes. Most professors are willing and eager to support their students with disabilities because they want to see them become successful. If you feel that you are not getting enough support from your professors, reach out in an email. Follow up with your campus accessibility office and keep track of your email correspondence. Your professors know of your future plans and ask for their advice. These conversations may lead to a greater connection with your professor. Toby Tomlinson Baker earned her PhD at Pepperdine University in Leadership and Global Policy. She is a lecturer at California State University—Los Angeles (CSULA), and she teaches special education with the Los Angeles Unified School District. Dr. Baker was awarded the Harrison Sylvester Award for her research by the Learning Disability Association (LDA) and has been CHADD’s 2018 Educator of the Year.
As a college student, the best way to figure out what you want to do with your life is to look to others, particularly professors. Who are the models that you admire? What have they done? Who are the professors who teach your favorite classes? These professors may become your lifelong mentors. Research studies show that one aspect that strengthens the academic advancement of a student with a disability (SWD) is their ability to form a relationship with faculty. The best way for an SWD to connect with a professor is to place a simple phone call. Reach out to each professor with a brief phone call, email, or a short Zoom session. The SWD may have to devote an hour and make four phone calls, but this step is crucial, and these phone calls or emails could change their semester or their life. Many professors become lifelong mentors and friends and may even provide a recommendation for a job. For postsecondary SWDs, meeting new faculty, particularly professors with PhDs, can be particularly daunting. Effectively communicating your needs is key. Even if every other step goes as planned when SWDs go to college, they face the barrier of the stigma associated with having a disability. Since many postsecondary SWDs yearn to avoid negative interactions with faculty, they hold back requesting their accommodations. But receiving support from higher education faculty is necessary to their academic success. It is always advisable for the SWD to follow up with each of their professors. Ask the professor directly if they received your email or letter from the accessibility department regarding your ac-
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PARENTAL SUPPORT
First Steps for Managing Cystic Fibrosis Diagnosis By Dr. Ronald I. Malcolm, EdD CYSTIC FIBROSIS IS A PROGRESSIVE GENETIC DISORDER INHERITED BY A CHILD FROM BOTH PARENTS. EACH PARENT MUST HAVE ONE COPY OF A DEFECTIVE CYSTIC FIBROSIS GENE, SO THE CHILD INHERITS BOTH COPIES OF THE DEFECTIVE GENE. WHILE THIS DISORDER IS WIDELY KNOWN FOR AFFECTING A CHILD’S LUNGS, IT CAN ALSO HAVE ADVERSE EFFECTS ON THEIR DIGESTIVE SYSTEM AND OTHER ORGANS. GENERALLY, IT WILL CAUSE A THICK MUCUS TO BUILD UP WITHIN THE LUNGS, WHICH CAN LEAD TO LIFETHREATENING INFECTIONS. So, what is the best way for you to assist your child with managing their cystic fibrosis? Here are 10 simple suggestions for assisting your child. 1. Educate yourself As a parent with a child who has cystic fibrosis, it is essential you begin to educate yourself as much as possible on your child’s health condition. As your child grows, you will both encounter many “well-meaning” individuals who may not fully understand your child’s medical situation.
Many people will simply look at your child and state, “They look healthy to me.” The more educated you become on cystic fibrosis, the better you will become at guiding your child through this journey and educating others effectively on your child’s needs. Your primary physician may be able to offer you some great resources to read. Your community may host sponsored support groups where you can also obtain valuable information. Check out the Cystic Fibrosis Foundation and
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PARENTAL SUPPORT
locate a local chapter close to your community that can provide you with additional support and guidance. 2. Learn to accept help Many family members and friends will reach out to offer assistance upon learning of your child’s diagnosis. They will want to know ways in which they can help. Rather than politely dismissing their offers, consider taking them up on them. Perhaps you can let a neighbor babysit your other kids while you are busy at the hospital with your child with cystic fibrosis, or let the grandparents watch your child with cystic fibrosis so you can do some shopping. Maybe you could allow church members to video chat with your child with cystic fibrosis so you can help your other children with homework, etc. Many who offer to “help” are generally quite sincere in wanting to assist your family. They will feel good about helping, your child with cystic fibrosis will get to interact with different individuals, and you may get a necessary break from your daily routine to renew your own strength. 3. Consider a 504 Plan Many children attending public school with cystic fibrosis have a 504 Plan. You will need to be an advocate for your own child. While your child may present as “healthy looking” without any academic deficiencies, they may still require a 504 Plan written by their public school. Many children with cystic fibrosis have frequent absences due to illness or require time away from school for regular medical treatments. The 504 Plan will assist you and your child with cystic fibrosis by developing a plan of action to ensure your child does not fall behind academically while attending these medical appointments and missing school. 4. Teaching your child to advocate Children with cystic fibrosis cannot advocate for themselves if they don’t have a basic understanding of their medical condition. It will be important for you to educate your child on what cystic fibrosis is. This can be done in many different ways. Some parents prefer to do it directly by working with their own child in a one-on-one situation. Other parents prefer additional support provided by a trained medical professional working with the child or a school counselor. There is also a wide array of books that can be given to your child so they can become better educated on how cystic fibrosis will affect them daily. Such books include: • Taking Cystic Fibrosis to School—Cynthia Henry • Mallory’s 65 Roses—Diane Shader Smith • My DNA Diary—Cystic Fibrosis—Lia Mullan • Having Cystic Fibrosis is a Lot Like Being a Super Hero—Dr. Kelsey M. Finn • Terry’s Journey to Cystic Fibrosis Land—Terry Gene Wright
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As your child becomes more knowledgeable about cystic fibrosis, they will become better advocates for their own needs. 5. Working with the classroom teacher As we all know, classroom teachers often spend more time with our children than we do as parents. You will need to work with your child’s classroom teacher to better educate them on how to best assist your child. Keep in mind your child with cystic fibrosis may be the first student with this condition with whom the educator has worked. Try not to overload or frighten the teacher of your child. Let them know you are approachable and always willing to assist. The teacher will want to know how to assist your child as they attend school. Let the teacher know that if they notice your child appears to be coughing more than usual, wheezing, presents with a stuffy nose, or is fatigued, it will be best to contact you. Give them a means for contacting you through your cell phone or an updated e-mail address. In addition, they will need to understand your child may need additional time to eat lunch or even require a snack in the middle of the school day. Many classroom teachers with students with cystic fibrosis have also been trained on how to administer the enzymes younger children with cystic fibrosis require before eating lunch or a snack. This enzyme will assist your child with digesting fats, starches, and proteins. It can also save your child with cystic fibrosis from going to the nurse’s office to get the enzyme they need and encountering another student who has the flu or a high temperature and contracting an illness. Older students with cystic fibrosis have generally been trained to administer their enzymes on their own. Finally, simple reminders are helpful for teachers, such as reminding them your child may need frequent access to the bathroom. It’s also important not to focus undue attention on your child if they pass gas in class or cough quite a bit during class lectures. And it’s vital not to draw attention if the child needs to change seating arrangements when another student sitting close to them appears to have a cold. 6. Siblings at home Many children with cystic fibrosis have a sibling who does not have cystic fibrosis. While caring for a child with a chronic health condition can become exhausting and overwhelming, you need to keep in mind the needs of your other children who may not have cystic fibrosis. Involve them in conversations that allow them to have a better understanding of what is going on with the sibling who does have cystic fibrosis. Arrange your schedule to make time to spend with the sibling(s) who doesn’t have cystic fibrosis, so they don’t become “overlooked.” Many children who have a sibling with a serious health-related condition can feel isolated or lonely in their own families.
PARENTAL SUPPORT
Some careful planning can assure your child without cystic fibrosis they have value and you share as much “love” for them as for your other child(ren). 7. Other students with cystic fibrosis As a parent of a child with cystic fibrosis, it is absolutely essential you understand your child cannot be in direct contact with another student at school who also has cystic fibrosis. While it’s not contagious, children with cystic fibrosis are at a much greater risk of getting and transmitting germs and bacteria that are dangerous to other children with cystic fibrosis. It is often referred to as “cross-infection.” Children with cystic fibrosis have dangerous bacteria in their own lungs that are only contagious to other children who have cystic fibrosis. Such infections can cause a faster decline in your own child’s lung functioning. This is definitely information that needs to be shared with all the professionals at the school. If your child with cystic fibrosis has another class member who also has cystic fibrosis, they should not be in the same classroom. They should not share common items at school, drink from the same water foundation, use the same bathroom, sit at the same cafeteria table, or be in the school gymnasium together. If two children with cystic fibrosis attend the same school, they should always adhere to a “six-foot apart” rule. 8. PE and sports Children with cystic fibrosis may tire easily. They need to be taught to advocate and self-manage their own limits. Involvement in physical education and sports is possible. In fact, physical exercise can assist a child with cystic fibrosis by loosening some of the mucus that clogs their lungs. It can also be a healthy way for your child with cystic fibrosis to develop positive social relationships with peers by being involved in similar activities. Children with cystic fibrosis can become dehydrated, so speak to PE teachers and coaches about letting your child drink a 12-ounce sports drink with added salt and carbohydrates for every 20 to 30 minutes they exercise. 9. Planning for hospitalizations It is not uncommon for children with cystic fibrosis to need additional medical attention that may require hospitalization. Allow your child to be actively involved in this process. While they may “dread” the thought of going to the hospital “again,” plan for things that could give them more control of the situation. See if they have a special pair of pajamas they want to pack for their visit. Let them bring along their laptop so they can “Zoom” with friends and family members, as well as a preferred stuffed animal, video game, or toy, etc. Students with cystic fibrosis may even want to continue with their regular classroom activities and assignments in the hospital as a means of “keeping up” with their peers. As a parent, you just need to ensure they aren’t overdoing it when they should be resting.
10. Enjoy your child Ensure you take time to enjoy your child for who they are and not just their diagnosis. While cystic fibrosis is definitely a serious part of your child’s life, it is not their entire life. Focus on their abilities and interests. What kind of extracurricular interests do they have? Are they musically inclined, have art-related interests, like working with animals, prefer to bake, love singing, request to debate current topics, display a strong interest in academics, etc.? Managing their cystic fibrosis will be a lifetime event as they work towards becoming a contributing member of both your family and society. However, loving them and guiding them through childhood, holidays, vacations, and events with family members will be what they seriously remember about you as their parent. Being happy and having a “zest” for life does not have to be dampened due to cystic fibrosis.
Dr. Ronald I. Malcolm, EdD is an Assistant Director of Special Education for a public school district, an Associate Faculty Member with the University of Phoenix, and a Special Graduate Faculty member at the University of Kansas. He has bachelor’s level degrees in English and Special Education. He holds master’s level degrees in Counseling, Special Education, and School Administration. His doctorate degree is from Northern Arizona University in Educational Leadership. His post graduate degrees are in Positive Behavior Supports and Autism Spectrum Disorders. He has worked for the past 37 years with students between the ages of three to 21 with various healthrelated concerns in both school and community-based settings.
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COMMUNICATION EMOTIONAL HEALTH STRATEGIES
Best Ways to Identify and Manage Depression By J. Edwards Holt
WHILE MOST PEOPLE OCCASIONALLY FEEL SAD OR DEPRESSED, DEPRESSIVE DISORDER IS SOMETHING WAY BEYOND THAT. IT’S A COMPLEX DISORDER ANYONE CAN SUFFER FROM AND AFFECTS YOUR EMOTIONAL, PHYSICAL, BEHAVIORAL, AND COGNITIVE FUNCTIONS. Depressive disorder can make it difficult to manage the symptoms and leave you wondering how to deal with it. It is not uncommon for individuals with diagnoses like autism, anxiety disorder, and even those with physical illnesses to experience some form of depression. It is also very common for a family member or someone in close contact with the individual to experience depression themselves. While there are some common depression symptoms, it affects everyone differently. This article will help in identifying symptoms and managing depression.
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How to identify depression There currently isn’t a “depression test.” You can decide to see a mental health professional any time you think you’re experiencing depression. But if you aren’t sure, look through these symptoms and let your doctor know. • Feeling hopeless The most common symptom of depression is having a hopeless outlook on life. Depression skews how you view and feel about life, so you may feel like things will never get better. De-
EMOTIONAL HEALTH
pression can also cause feelings of intense guilt or self-hate, making you feel like negative things are all your fault. • Losing interest Those in depressive episodes lose interest in activities they normally enjoy. From a friend’s or family’s perspective, you’ll notice your loved one withdrawing from their normal sports, get-togethers, and hobbies. This can include sports, shopping, and hanging out with friends. If you’re suffering from depression, you’ll find it takes the enjoyment out of the activities you once loved. You’ll also feel less motivated to do things you need to do, such as go to work, exercise, and bathe. People suffering from depression can also lose interest in sex. Decreased sex drive and impotence are symptoms of major depression.
hormonal changes that occur around their period. These fluctuations, combined with environmental stressors, such as caretaking, work, and responsibilities at home, can be overwhelming. • Having suicidal thoughts or attempts at suicide Unfortunately, severe depression carries a risk of suicide. Depression alters your perception, which can lead you to seek permanent solutions for temporary problems. If things seem bleak and overwhelming, suicide can seem like an option to end deep suffering. Suicidal thoughts should be taken seriously. Some warning signs are: • Tying up loose ends, like changing a will • Talking about death • Taking risks that could lead to death • Talking about feeling hopeless
• Experiencing fatigue One of the reasons depression is so difficult to fight is because it causes fatigue. If you feel tired all the time, it’s much easier to stay in bed rather than try and do the things you usually love. This could also lead to excessive sleeping since you lack energy. Depression can also lead to sleep problems, such as insomnia. Depression and insomnia make each other worse, as your lack of quality sleep exacerbates symptoms. • Feeling anxiety Anxiety doesn’t cause depression, but anxiety and depression often go together. Anxiety causes feelings of dread, panic, restlessness, and tension. Physical symptoms include rapid heart rate, heavy breathing, and even twitching or trembling. • A change in appetite Changes in appetite are different in every person who deals with depression. You may find an increased appetite and gain weight, or you may have a decreased appetite and lose weight. If changes in your appetite aren’t intentional, they may be a sign of depression. A changing appetite is sometimes an early sign of depression or a warning of a relapse. A sudden weight change can also be a warning, especially if you have experienced depression in the past. Weight fluctuations can be related to other depression symptoms. Lack of energy, fatigue, and loss of interest in other activities can lead to loss of interest in eating. Some people experience nausea, which causes their loss of appetite. • Experiencing mood swings Emotions can feel uncontrollable when you’re depressed. With everything going on in your body, you may experience anger one minute and uncontrollable sadness and crying the next. Women can be more susceptible to mood swings with the Exceptional Needs Today | Issue 7 | 59
EMOTIONAL HEALTH
• • •
A sudden switch from sadness to happiness, or seeming calm Visiting loved ones and close friends Giving away possessions
If you or someone you know is showing these symptoms, immediately contact a mental health professional, call a suicide hotline, or go to the emergency room.
How to manage depression Depression drains your hope, energy, and drive, which can make you wonder how to deal with depression at all. But the things that are the most tiring are usually the ones that help the most. The trick is to take small, manageable steps and not be hard on yourself. Coping with depression is going to look different for everyone. But here are some tips to get you moving in the right direction: • Speak to a mental health professional Seeking help from a professional doesn’t mean you’re weak. A professional can give you personal direction to feel better. It also helps to have someone who won’t judge you and is on your side on your road to recovery. • Reach out to a loved one Depression can often be isolating, especially when it seems tiring to do things you used to enjoy. But feeling support from people who make you feel safe is important for managing depression. If meeting up with friends seems overwhelming, try texting first. Take time to volunteer and help others. • Do things that make you feel good Although putting yourself out into the world may not be fun, it’ll boost your mood and give you energy. Even if you don’t feel like it, prioritize doing fun things. Do things you used to like. Get enough sleep, exercise, and eat food that makes you feel good. Actively fight stress in your life. Stress and anxiety often get worse with depression, so pick activities that energize and relax you. Practice relaxation techniques, such as deep breathing, yoga, and meditation. • Watch your thoughts Your thoughts can be your worst enemy. Write down what negative thoughts keep coming to mind. Once you write them down, you’ll be able to see them more clearly. Then you can challenge the distortions. Ask yourself: does this thought help? Challenge yourself to find evidence to support your negative thoughts, and find more accurate and positive thoughts instead. Depression affects everyone differently, but it’s always a serious concern. If you think you’re suffering from depression, contact a mental health professional.
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References
“Depression’s Effect On Your Appetite.”—https://www.everydayhealth. com/hs/major-depression/depressions-effect-on-appetite/ “Depression and Mood Swings.”—https://www.sanfordhealth.org/medicalservices/womens/midlife/depression-and-mood-swings “Symptoms of Depression.”—https://www.webmd.com/depression/guide/ detecting-depression “Signs of Depression.”—https://www.healthline.com/health/depression/ recognizing-symptoms#suicidalthoughts “Coping with Depression.”—https://www.helpguide.org/articles/ depression/coping-with-depression.htm “Tips to Manage Depression.”—https://adaa.org/understanding-anxiety/ depression/tips
J. Edwards Holt is an American author who has spent a lifetime dealing with mental health problems. Diagnosed with Tourette’s syndrome, anxiety, and depression at 10 years old, and later OCD and ADHD at 13, success has never come easy for him. After spending most of elementary and middle school isolated, in and out of therapy, Holt managed to turn things around and graduated high school as Valedictorian, later on going on to graduate college with a major in education. Even today, as a successful author, Holt still copes with symptoms of his illnesses. Because of this, he is a continued advocate for those struggling with mental health, incorporating bits and pieces of his own experiences in his written works. Website: jedwardsholt.com
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WE STRIVE TO MAKE SMART FINANCIAL PLANNING ACCESSIBLE TO ALL FAMILIES. • Who will care for my child when I’m gone? • How do we access and keep public benefits? • How much money will it take to support our child?
SAFETY STRATEGIES
SAFETY GOALS
NICOLE
REDUCING THE RISK OF ABUSE WITH CHILDREN WITH DISABILITY
Keeping Individuals with Exceptional Needs Safe Through Education and Resources
By Nicole Moehring
L
et me introduce myself and the reason for this column. My name is Nicole Moehring. I am a wife, the mother of two children, an advocate for children with disabilities, and the founder of Voices of Change 2018 (VOC18). My daughter, Maci, is neurotypical, and my son, Evan, was diagnosed with Fragile X Syndrome and autism at 14 months old. Ever since my children were young, I taught them about body safety, stranger danger, and to come to me immediately if they felt unsafe around someone. What I didn’t know—because no one talks about child abuse—was children with disabilities are more likely to be victims of abuse by someone they or their family knows and trusts. According to the United States Department of Health and Human Services, in 2009, 11% of all child abuse victims had a physical, cognitive, and/or behavioral disability, and children with disabilities are almost two times more likely to be physically or sexually abused or neglected than children without disabilities.
his healing process. However, finding resources, supports, or trauma-responsive mental health clinicians trained to work with children with disabilities who have been victims of sexual abuse isn’t easy. My daughter Maci and I founded Voices of Change 2018 (VOC18), a nonprofit organization, to begin making much-needed change for children like my son, Evan. VOC18 is a national organization piloting our groundbreaking programs in Ohio. We are developing preventative education and training for children
I never thought it would happen to my child. But in 2016, my worst nightmare came true. My son disclosed he had been sexually abused by someone we knew and trusted. Throughout the process of seeking justice, my son was treated as different and discriminated against. It was heart-wrenching to know he had already suffered unthinkable trauma; being treated so poorly by people who were supposed to be protecting him only made matters worse. I experienced many challenges in trying to navigate the criminal justice system as there are few protocols in place to help children with disabilities. I was on my own to find help for our family and resources for my son to begin
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SAFETY STRATEGIES
with disabilities while empowering parents and guardians. By sharing our lived experiences and through collaborations with other individuals, mental health professionals, and organizations, we will build a foundation of advocacy, abuse awareness, community resources, and support for children with disabilities and their families. I am the first-time author of Finding Myself, Overcoming Abuse, Heartbreak, and Loss Then, Finding True Love and am currently writing my second book, Finding My Voice. I serve on the Ohio Attorney General Committee for Crime Victims with Disabilities and am a DS-Ambassador for the National Down Syndrome Society (DS-Ambassadors are volunteer advocates of all abilities committed to taking part in the democratic process and serving as liaisons between NDSS and their congressional delegations). I am honored to be writing column for Exceptional Needs Today to share my journey and educate readers on how to reduce the risk of abuse happening to their children. For questions or suggestions for future topics, please email me.
After Nicole’s children were abused, she quickly recognized the distinct differences in recovery, finding support, and receiving justice for neurotypical children vs. children with disabilities. Nicole and her daughter Maci founded Voices of Change 2018 (VOC18), a nonprofit organization, to begin making much-needed change for children like her son. VOC18 is a national organization piloting our groundbreaking programs in Ohio. They are in the process of developing preventative education and training for children with disabilities while empowering parents and guardians. By sharing their lived experiences and through collaborations with other individuals, mental health professionals, and organizations, they are building a foundation of advocacy, abuse awareness, community resources, and support for children with disabilities and their families. Website: www.voicesofchange2018.org Facebook: https://www.facebook.com/voicesofchange2018/ LinkedIn: https://www.linkedin.com/company/voices-ofchange-2018/ Pinterest: https://www.pinterest.com/voicesofchange2018/_ created/ Email: info@voicesofchange2018.com
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EXCEPTIONAL NEEDS TODAY
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THERAPIES AND TREATMENTS
Every Child Has a Song:
Supporting Communication Through Music By Rose Adams MS, OTR/L Exceptional Needs Today | Issue 7 | 63
THERAPIES AND TREATMENTS
It’s a new day—it’s a new year. How can we best support our children this year? Listen to their song. Every child has a song. What is a child’s song?
What is a child’s song? Every child has an individual way of connecting and communicating with the world. This unique form of expression, whether through voice, sound, movement, or touch, is what I refer to as their song. For young children with autism spectrum disorder (ASD) and other developmental disabilities, individual differences may impact how they connect and communicate with their world (Lense & Camarata, 2020; Vaiouli & Friesen, 2016). To best support these differences, it is important to consider a child’s individual strengths and interests (Aspy & Grossman, 2011; Galloway et al., 2020; Shin, 2017; Vaiouli & Friesen, 2016; Watkins et al., 2019). Through the discovery of their strengths and interests, we may identify their song—or better support them with connecting, communicating, and learning.
ing them. Music in all forms can also be inclusive (Shin, 2017). Let’s consider a preschool classroom with students from diverse backgrounds with diverse learning needs. When a new subject or task is presented, they may experience challenges related to how the concepts are introduced. However, when music is incorporated, everyone might be included. Lastly, music is accessible in the sense that it is all around and within us (Shin, 2017; Vaiouli & Friesen, 2016). Some may hear music through sounds and songs while others experience music through movement and touch. We are innately musical (Sole 2017; Vaiouli & Friesen, 2016). So, how does all of this translate to the idea that every child has a song? I believe, when we are attuned to the individual differences, needs, strengths, and interests of young children, we discover their songs.
Making the connection
When I think of song, I recall my early experiences as a second-language kindergarten student. Shin (2017) encourages incorporating music and movement to engage and support young children who are second and foreign language learners. In Haiti, songs were a part of my culture and everyday life. When I entered kindergarten, I did not speak English, but I understood song. The first song which I recall learning was the “Hokey Pokey” during a school-wide, outdoor field day event. I remember being so engaged while moving, singing, and imitating my peers and teachers. Most of all, I remember how fun that experience was for me. From that moment, I began to understand and connect with my world through song.
As an occupational therapist, part of my work is to collaboratively engage and support my clients through participation in meaningful and valued occupations (AOTA, 2020). For young children, this may include playing, interacting with peers, accessing communication, or performing daily living skills. I use music through songs, movement, and rhythmic sounds to engage, motivate, teach, and support students with participating in early occupations in a fun way! How can you support a child’s song this year? Be open to more. Listen more, wait more, observe more, join more, and create more music with all children. Every child has a song.
Today, I’m a mom of energetic and curious twin boys. We use songs for everything! We sing to clean up, read, get dressed, and the list goes on! Take a moment to think back to your earliest song or musical memory. What made it so memorable? How well do you remember the lyrics or experience?
References
For most of my career, I have worked in school-based settings. I discovered the positive impact music can have on a child’s development and social relationships (Lense & Camarata, 2020; Shin, 2017; Sole, 2017; Vaiouli & Friesen, 2016). Music is a universal medium by which children develop, engage, communicate, find joy in learning, and participate in meaningful activities or occupations (AOTA, 2020; Shin, 2017; Sole, 2017; Vaiouli & Friesen, 2016).
Aspy, R., & Grossman, B. G. (2011). The Ziggurat Model 2.0: A framework for designing comprehensive interventions for high-functioning individuals with autism spectrum disorders. Autism Asperger Publishing Company.
Some ways music can support occupations are to promote (1) engagement, (2) inclusion, and (3) accessibility (Lense & Camarata, 2020; Shin, 2017; Sole, 2017; Vaiouli & Friesen, 2016). Engagement in occupations is defined by the Occupational Therapy Practice Framework (OTPF-4) as being choice-driven, motivating, and meaningful (AOTA, 2020). When young children are provided with opportunities to engage in activities that are personally important and valued, they may find joy while do-
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American Occupational Therapy Association. (2020). Occupational therapy practice framework: Domain and process (4th ed.). American Journal of Occupational Therapy, 74 (Suppl. 2), 7412410010. https://doi.org/10.5014/ ajot.2020.74S2001
Galloway, R., Reynolds, B., & Williamson, J. (2020). Strengths-based teaching and learning approaches for children: Perceptions and practices. Journal of Pedagogical Research, 4(1), 31-45. http://dx.doi.org/10.33902/JPR.2020058178 Lense, M. D., & Camarata, S. (2020). PRESS-Play: Musical engagement as a motivating platform for social interaction and social play in young children with ASD. Music & Science, 3, 1-13. https://doi.org/10.1177/2059204320933080 Watkins, L., O’Reilly, M., Kuhn, M., & Ledbetter-Cho, K. (2019). An interest-based intervention package to increase peer social interaction in young children with autism spectrum disorder. Journal of Applied Behavior Analysis, 52(1), 132– 149. https://doi.org/10.1002/jaba.514
THERAPIES AND TREATMENTS
Sole, M. (2017). Crib song: Insights into functions of toddlers’ private spontaneous singing. Psychology of Music, 45(2), 172–192. https://doi. org/10.1177/0305735616650746
Vaiouli, P., & Friesen, A. (2016). The magic of music: Engaging young children with autism spectrum disorders in early literacy activities with their peers. Childhood Education, 92(2), 126–133. https://doi.org/10.1080/00094056.2016. 1150745
Shin, J. (2017). Get up and Sing! Get up and Move! Using songs and movement with young learners of English. English Teaching Forum, 55(2). https://americanenglish.state.gov/
Rose Adams, MS, OTR/L is an occupational therapist who works with clients on the autism spectrum and other neurodiverse needs. She has worked in schools, private practice settings, and community-based programs. She is a director at Changing Lives Occupational Therapy, PC. and currently works at a community-based preschool in New York. Rose is pursuing her doctorate degree in occupational therapy at Boston University’s Post Professional Occupational Therapy Doctorate (PPOTD) program. Her doctoral project focuses on using song-based interventions to support young children with disabilities participate in school-based occupations. Website: https://www.changinglivesot.com/
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MY WORD
How Writing the Story of My Lifetime Disability Brought Me
Freedom, Peace, Joy, and the Compassion to Help Others By Victoria K. Mavis, SPHR
I NEVER DREAMED OF WRITING A BOOK—JUST AS I DIDN’T IMAGINE MY CHILDHOOD ROMPING IN A BARN WOULD RESULT IN A LIFETIME DISABILITY THAT MAKES EACH STEP PAINFUL, CAUSES PEOPLE TO STARE, TURNS HEADS IN AVOIDANCE, OR SETS OFF WHISPERS AS I LIMP BY. HOWEVER, LIFE TEACHES US THAT ALONGSIDE FOLLOWING OUR DREAMS, IT’S ESSENTIAL TO TAKE ADVANTAGE OF UNPLANNED OPPORTUNITIES; TOGETHER, THEY CAN LEAD TO A LIFE BEYOND OUR WILDEST IMAGINATION.
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MY WORD
I first realized my life story could help others find healing while listening to a keynote address at a diversity conference in the early ‘90s. I was the only attendee with a noticeable physical disability in a room of over 500 people. As the speaker recounted being bullied and discriminated against as a minority (Puerto Rican), my cheeks felt the burning of his tears. I didn’t share his race or skin color, but I did share the emotional pain of his mistreatments based on my walking disability, which demands an awkward limp and ever-present forearm crutches. Flying home, I mentally outlined my life’s book; it would be about the tragedy I had suffered since early childhood as the result of falling headfirst from a hayloft onto the cement below, resulting in a coma. When I regained consciousness, I was left with significant neurological and muscular damage, as well as a loss of speech. It’s quite the beginning to a life story, huh? However, it lacked a navigable track of healing readers could benefit from, especially since I felt anguish every time someone asked, “What happened?” With this mindset, the only story I could envision involved the main character spewing resentment for the things she didn’t have and blaming her shortcomings on her disability. Waiting in the baggage claim area, I brushed all thoughts of writing a memoir aside as my suitcase slid down the chute. Several years later, the book idea resurfaced after receiving accolades for my inspiration to workshop attendees. This was a first; most people I’ve met over my lifetime walk up, ask, “What happened?” and promptly walk away after I answer. Dumbfounded, I met with the facilitator who expressed, “People want to hear stories of passion, ones that leave them with an array of experiences and emotions—from the depths of sorrow to the pinnacle of euphoria. Your message of overcoming tragedy is inspirational. Others will want to know how you did it, to help them or their loved ones.” Leaving the workshop was the start to writing my life-inspired book, Every Scar Tells a Story. For me, the writing was painstaking. While trying to tell how I overcame the many obstacles I faced over my 50 plus years with a disability, as well as identifying good things associated with it (other than handicap parking), I was forced to recount the tragic past in precise detail. I cried over childhood memories (i.e., being excluded from birthday parties, the embarrassment of being picked last for team sports, being tripped in the cafeteria line, or having “gimp” spray-painted on my locker). Some days it was impossible to escape sorrow as I viewed everything I didn’t get in life that I wanted (i.e., the guy I fell in love with married someone else, or when I was denied the job promotion to manager) was because of my disability. Eventually, I asked a friend and business colleague to be my co-author. His role was to review my writing to give impartial feedback since he, as most people who knew me, didn’t
know what caused my disability. His experience as an educator, former coach, and superintendent helped craft details of how I overcame my disability to lead a successful professional and personal life. His input was invaluable as it helped the storyline develop to appeal to and inspire a diverse group of readers, both with and without a disability. Despite the emotional toll I felt from writing and rewriting, I continued; the days quickly grew from months into years. Many times my co-author must have felt the same high level of frustration with my writing avoidance as I had a distaste for his prodding. It was like physical therapy I had as a child— although it’s for growth and development, the process was relentless and painful. When he pushed for answers to the “whys” and “hows” involving the accident, people’s treatment towards my disability, or how I managed my physical limitations, my gut wrenched as I dug for a response other than self-pity or being a victim. More than once, “I quit.” It was too painful to continue reliving the past without coming up with answers that put my heart at peace. However, I would always return to writing after enough separation had occurred to replace some level of grief with acceptance; thus, the mosaic of my life was changing, but not at a pace fast enough to prevent me from repeating the same theme in subsequent chapters— being the victim to a disability. Near the end, I knew what was left to be done to move forward with the book. It was to reconcile one seemingly small— but significant—piece of my past, so I don’t continue the grief with every painful step I take or every stranger who asks me, “What happened?” I know…I know…reading this sounds like I should have seen a therapist or gone to church, right? Well, those were tried, and like some of my surgeries, they didn’t work for me. So, I decided to attempt a different approach: to revisit the past in the present. This meant interviewing family members who had firsthand knowledge of my accident and my adoption and visiting the barn where the accident occurred. My thought was to piece together what happened from interviews or by reliving the accident; by doing so, I hoped to release the misery and haunting nightmares associated with it. The interviews and visiting the barn successfully filled in the missing details; however, I wasn’t ready to publish the book. Yes—it had a good storyline, but the reader (me) didn’t feel healed from my journey as I read the final draft. At this juncture, I screamed in an email to my co-author that I couldn’t write another word or edit another page; it was time to shred the manuscript! Thankfully, he prodded for one last push towards the finish line—I did what he asked. I can’t say exactly how it happened, but one day all pages flowed perfectly, and I had a peaceful heart. I FINALLY felt the freedom, joy, and selflove I dreamed this journey would end with. I now live without tears for the past or fears of the future.
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As I envision readers may experience the same positive feelings at some point after reflecting on their own respective journeys, I can say with confidence that you can’t predict the time needed to heal the soul or the exact steps your journey will take for it to happen. My co-author knew this long before I did as he patiently supported the 10 years of writing and more than 15 manuscript versions before Every Scar Tells a Story was ready to print. When asked why he thought it took me so long, his response was simple yet insightful: “How could you write the ending to a journey that you hadn’t yet experienced?” If you’re inspired by my passage to acceptance, freedom, and inner peace, take what action you deem appropriate to understand the past so you can learn, adapt, and grow from it. As I discovered, everyone has their own story that molds their core identity, as well as the ability to choose to remain a victim of that story or to pursue a life that leads in a differ-
ent direction. In the end, I discovered the key for my living an empowered life was not how many hurdles I conquered, the amount of stuff I owned, or the number of friends I had; rather, it was found interwoven in the fabric of how I overcame the limitations of my past, including the self-defeating statements that replayed continuously in my head. To be victorious, we must breathe in the freedom, peace, joy, and love the present and future can bring rather than remaining stuck in past tragedies or injustices. I’ll close with the words of my co-author, Angelo R. Senese, EdD, “Daily we must choose how to use the gifts given to us; above all, we must use them to benefit one another. Life is difficult, but we are sustained by the wonder of all that we see and feel, the warmth of friends, and the love of family. We have the freedom to make friends, embrace those we love, find joy in the beauty all around us, and serve others. Use the time wisely.”
Sources
Every Scar Tells a Story by Victoria K. Mavis and Angelo R. Senese, EdD, 2020 Victoria K. Mavis, SPHR, had a tragic accident in 1964 at the age of four that resulted in brain trauma and left her partially paralyzed. Facing a grim diagnosis, she fought for her life and relearned how to perform basic functions such as walking and talking. Within a year of her accident, she would be the first physically handicapped child to enter a school system that wasn’t equipped physically or culturally for her special needs. She was a pioneer for equality of treatment in an era when people who were handicapped were considered social misfits who should be institutionalized, openly ridiculed, and discriminated against for access to public systems. Victoria paved the way for others who “didn’t fit in” long before the Americans With Disabilities Act (ADA) was ever proposed or before “bullying” was a community epidemic to resolve. Victoria is a speaker, author, and human resources (HR) professional who has owned her own businesses, as well as been employed by private industry ranging from privately held companies to large international manufacturing corporations. She holds an MBA, is lifetime certified as a Senior Professional in Human Resources (SPHR) by the Society of Human Resource Management, and is certified as a behavioral specialist. She has held memberships in Rotary International, BNI, and other business, professional, and community organizations. Victoria recently relocated to her home state of Michigan. She is developing programs for disability agencies, educational institutions, and healthcare providers to increase disability awareness so individuals with disabilities can maintain independent lifestyles. Website: https://www.victoriamavis.com/ Facebook: https://www.facebook.com/victoria.mavis Twitter: https://twitter.com/victoriamavis LinkedIn: https://www.linkedin.com/in/victoriamavis/ Instagram: https://www.instagram.com/vmavis99/ Email: vmavis88@gmail.com
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Taking Care of YOU
—The Importance of Self-Care When There are Exceptional Needs By Annette Nuñez, LMFT, PhD
PARENTING A CHILD WITH EXCEPTIONAL NEEDS CAN BE A CHALLENGING AND OVERWHELMING JOB. YOUR LIFE REVOLVES AROUND YOUR CHILD, FROM MANAGING MELTDOWNS TO TAKING THEM TO VARIOUS THERAPIES. IT IS VITAL TO ASK YOURSELF, “WHAT HAVE I DONE FOR ME TODAY?” YOU ARE HUMAN, AND IF YOU DON’T TAKE TIME OUT FOR YOURSELF, YOU MAY FIND YOURSELF WITH LITTLE LEFT TO GIVE TO THE PEOPLE YOU LOVE.
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EMOTIONAL HEALTH
Remember your child’s achievement is dependent upon you. When you have nothing remaining in your tank, you will become impatient and frustrated, which in turn affects your child, likely leading to more meltdowns or increased anxiety. Selfcare is a mindset, and it is vital to surviving as a parent. When you are your best self, so is your child. Many parents tell me, “I don’t have time.” My suggestion is to MAKE TIME! When you pause, slow down, and take time for yourself, you are giving yourself permission to care for oneself. For clients who struggle with self-care, I tell them to participate in my 21-Day Self-Care Challenge. It has been said it takes 21 days to alter a habit. So, if you are in the practice of NOT taking time for yourself, let’s change that starting today! I recommend starting the challenge when your child is in school because school provides a natural break for you. Instead of running an errand, use that time to take care of YOU. Believe me, the errand can wait. For 21 days, take 10 to 15 minutes a day to care for yourself. By doing this, you are saying to yourself that you are worth it and that you are valuable. To start the challenge, create a monthly calendar and decide when you will begin. Write down 21 self-care activities you can do. Here is my list of 10 easy and simple self-care ideas: 1. Take a walk 2. Listen to your favorite song on repeat 3. Indulge in a bubble bath 4. Eat your favorite food 5. Sit outside for five minutes while taking deep breaths 6. Watch a movie 7. Read a book 8. Join an exercise class 9. Nap 10. Learn to say, “No.” When your 21-Day Self-Care Challenge is complete, reward yourself with meeting up with friends for the evening or going
away by yourself for the weekend. In just 21 days, you should see your mood improve. Studies have shown self-care promotes positivity, improves confidence, and raises self-esteem. This eventually affects your mood as a parent. You may notice you have more patience and energy after practicing regular selfcare, which then affects your child’s mood. So the next time you are confronted with the choice between completing an errand or making time for you, ask yourself, “Does this errand promote my health? Is it allowing me to become the best version of me?” If the answer is, “No,” drop that errand and go take care of yourself. YOU are worth it!
Annette Nuñez, LMFT, PhD is the founder and director of Breakthrough Interventions, LLC and Potential Health, LLC. She is a licensed psychotherapist and has worked with children with ASD and other related disorders for over 28 years. As part of her doctorate work at the University of Denver, Dr. Nuñez developed the Children’s Social Competence Scale (CSCS). The CSCS is an early intervention evaluation tool that measures social competency in young children. She served as the Program Director for Connect Us, a non-profit organization that helps children cultivate positive relationships through facilitated play. Her research interests include the mainstreaming and socialization of children with high functioning autism. Dr. Nuñez co-wrote and self-published the Friendship Is… book. She conducts many seminars both nationally and internationally and has consulted with many schools in China and supervises the therapists at Breakthrough Interventions in South Africa. Her most recent project is starting Potential Health, LLC—a hemp line that offers various products to children with autism and their caretakers to help with sleep and relieve the stress of day-to-day living. Dr. Nuñez has been featured in the Huffington Post, San Francisco Chronicle, NPR, ABC, CBS, NBC, FOX News, Forbes, The Jenny McCarthy Show, and The Today Show. Websites: http://www.btinterventions.com, https://www.breakingthroughautism.com, https://potentialhealthproducts.com/, https://www. notyourstandarddr.com Facebook: https://m.facebook.com/profile.php?id=462556703926821&ref=content_filter Instagram: https://www.instagram.com/breakthrough_autism/, https://www.instagram.com/potentialhealthwellness/
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THERAPIES AND TREATMENTS
The Power of
Art Therapy By JC Ellinger A HIGH SCHOOL-AGED TEENAGER WAS ASKED TO DRAW A SELF-REFLECTION SHOWN IN THE ARTWORK DEPICTED. “THIS IS ONE ART DIRECTIVE I ASK OF MANY OF MY TWEENS AND TEEN CLIENTS,” SHARES MS. SPODEK-SCHLINDER. ADOLESCENTS MANEUVER THROUGH A PARADIGM OF INSTAGRAM-LOOK PERFECTION. THERE LIES A DEFEATING AND MISCONSTRUED IDEALISM OF HOW BEAUTY SHOULD LOOK. GROWING OUR SELF-ESTEEM AND OUR ABILITY TO REDEFINE WHAT BEAUTY AUTHENTICALLY MEANS REQUIRES A DEEPER LOOK THAT SOMETIMES, IN THIS INSTANCE, MAY TAKE MONTHS OR LONGER TO BELIEVE. THE ART THERAPIST NOTED THAT THIS YOUNG LADY “...FOCUSED ON HER FACIAL ACNE, THE WAY HER HAIR LOOKED, HOW SAD SHE FELT WHEN SHE WASN’T DISTRACTED BY HAPPY THINGS AROUND HER...” for the need for mental health, is offered in various extensions, including art therapy. Found all over the globe, from Australia to the islands of Taiwan and Thailand and across the aurora skies of Iceland, art therapy has a home establishment. The American Art Therapy Association defines art therapy as “an integrative mental health and human services profession that enriches the lives of individuals, families, and communities through active artmaking, creative process, and applied psychological theory, and human experience with a psychotherapeutic relationship.” Essentially, clients use art therapy to promote a natural and healthy process of attending to their individual psychological and cognitive needs.
A piece from Harvard University titled, The Healing Power of Art supports scientific studies that have linked the use of art and aiding individuals in a number of ways. When individuals are placed in a “fight or flight” situation, including situations that are deemed irrational or non-life-threatening such as school pressures and family frustrations, “a sequence of hormonal changes and physiological responses” takes place. Consequently, repeated activation of our individual stressors yields neurological changes such as depression, anxiety, and high blood pressure. The term “therapy” is often interpreted as a psychiatric form of mental support. But therapy, with greater acknowledgment
Paint The Stars, an art therapy center owned by Art Therapist Robyn Spodek-Schindler, adds that the changes in the education system, through art and music school programs, have caused parents and children to seek more creative options “to process various issues or symptoms.” This growth, specifically in the state of New Jersey, has seen a notable change in that “the state has passed its own art therapy license. As more and more states begin to recognize art therapy as its own important and individual field, then clients also become more aware and are more likely to reach out.” Another organization that is giving unto others is The Art of Autism, a nonprofit organization that has used the gift of art to coalesce and bring to the forefront artistic autists. The Art of Autism was founded by Keri Bowers and Debra Muzikar, both of whom have sons on the autism spectrum. They interwove their own talent of the arts into their parenting style. A glance at their
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website brings vivid colors of imagination to the screen, vibrantly filled with captivating talent and gifts from individuals with ASD. What is it about the process of art that can bring a form of healing, peace, and also purpose? Ms. Spodek-Schindler shared this story: This young man comes to see me for various anxiety-related issues, many of which are socially related. Whenever I offer him a medium to choose from, he is always hesitant and almost always requests that I choose for him. I typically push him gently, explaining that it is his artwork, not mine, and he should be able to choose. I do my best to reassure him this is his space. In one particular session, he began choosing his own paint colors AND immediately began adding them to his palette without asking me if he could pick a certain color. These accomplishments, which may seem minute in a world that contains judgment and labels, are triumphs in our eyes—the eyes of the loved ones of special needs individuals. Moreover, the pathways we have each found ourselves on have taught us that the lens through which we see the world can also come equipped with extraordinary vision…even if the vision before us may at times seem frayed or askew. The use of art has proved to provide an open gateway for many to express their feelings, find meaning, and see the world is not meant to be symmetrical. True beauty lies in our individual arrangements, which are full of juxtapositions, asymmetry, and abstraction. The unique lens that accompanies our pain, hurt, and sadness can be transformed into a work of art when those emotions are acknowledged but not allowed to take hold. This piece began with an aching image that translated the feelings of a young woman with the word “hopeless” written across her face. After months of art therapy with her therapist Ms. SpodekSchlinder, she saw great improvement. “We worked together on filling the mirror with positive things about herself. We moved from feeling ‘helpless’ to confidently saying ‘I can help myself whenever I need it.’” As an art therapist, Ms. Spodek-Schlinder has dedicated her compassion and selfless dedication toward a greater purpose. She carries on her message to say, “They [client’s artwork] spoke to me at different times of my career...serving as reminders for how important images and creativity can be—especially important among a population that is so closed off and often cannot find the words.”
Works Cited
Art Therapy Association. “Member Demographics.” 2021. https:// arttherapy.org/upload/MemberDemographics_2021.pdf American Art Therapy Association. “About Art Therapy.” 2021. https:// arttherapy.org/about-art-therapy/, Accessed 21 August 2021. “The Healing Power of Art.” Harvard Health Publishing. 2017. www. health.harvard.edu/mental-health/the-healing-power-of-art, Accessed 20 August 2021. “Understanding the Stress Response.” Harvard Health Publishing. 2020. www.health.harvard.edu/staying-healthy/understanding-thestress-response, Accessed 23 August 2021. Robyn Spodek-Schindler, LPC, LCAT, ATR-BC, NCC is the Owner/ Therapist of Paint the Stars Art Therapy, LLC.
JC Ellinger brings life stories and experiences as an autism mom to publications such as Autism Parenting Magazine and Exceptional Needs Today. She is currently working on her first children’s book geared at bringing relatability and support to other ASD children just like her amazing son. She carries an MBA from Regis University and a BA in Communications from CSU Long Beach. Now, she is returning to graduate school to add an MA in English to her resume and spread her love of writing to young minds. Facebook: https://www.facebook.com/jc.ellinger.writer Instagram: https://www.instagram.com/jc.ellinger Email: Juliet.ellinger01@gmail.com
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MY WORD
Raise Your Voice: Authentic Casting in Media By Roxanna Lewis RIGHT NOW IS THE TIME FOR A WIDER CROSS-SECTION OF OUR REAL WORLD TO BE REPRESENTED ON MAINSTREAM SCREENS AND STAGES. APPROXIMATELY ONE OUT OF EVERY FOUR ADULTS IN THE USA LIVES WITH A PHYSICAL OR PSYCHOLOGICAL DISABILITY. RESPONSIBLE STORYTELLING THROUGH CHARACTERS WHO REFLECT THE WAY OUR HOMES, SCHOOLS, AND COMMUNITIES ARE POPULATED PROMOTES ACCEPTANCE OF ALL IN OUR KALEIDOSCOPE OF A WORLD.
Dreambody (Kitty Lunn, Sonja Perreten)
As an only child, I was heavily influenced by the tight-knit, multi-generational immigrant home in which I was raised— my elders tirelessly dedicating their lives to human rights and social activism. Thankfully, I awakened as a young girl to the notion that every single person wants to be met where they are, have their voice recognized, and endeavor to live the fullest life possible. These inalienable rights transcend time, culture, and one’s physical abilities. These
John F. Kennedy Center archives
basic tenets of humanity require respect, compassion, and at least a modicum of interest in one another to create the heart-space to understand that which is less familiar to us. It is through being an artist, a sculptor of characters, an architect of stories, and a designer of worlds that I investigate what connects us as one human race.
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MY WORD
All of this came home in a recent project that speaks to my soul: directing and co-producing MANDY’S VOICE, a film about a curious and intelligent non-verbal autistic girl who struggles to communicate. Her single mother is desperate to provide the necessary tools for survival in a tough world where if one is without a voice, they are invisible as well. Perhaps one of the most exciting aspects of this film is that I believe it to be amongst the first narrative films to tell a story about an individual on the spectrum through authentic casting. I was determined to cast neurodivergent individuals to work both in front of the camera and behind the scenes. Almost half of our cast, crew, and executive team are either on the spectrum, a parent of someone on the spectrum, and/or an advocate of ASD. We didn’t aim to hit a mark—we just did what was right for the story. In the macro, this film serves as a mirror to our larger societal predispositions and prejudices against those who aren’t like “us.” A less exclusive definition of “us” is more important now in society than ever. In the micro, MANDY’S VOICE is a visual love letter between daughter and mother, the struggles and triumphs of their relationship. Every mother and every teen-daughter, every son and dad can relate to this story on some level. This is especially the case now as parents and kids work to navigate these very strange times of COVID-19. Issues of isolation, the need for connection, and the need to be heard are universal calls. This film is not only about accepting someone who appears different on the outside; it’s about taking it a step further by embracing that individual for who they are inside and out and owning one’s voice. Entering the world of filmmaking and TV through the side door after establishing my roots as a choreographer and theatrical director held some distinct advantages. I have worked with artists from all over the world, including individuals who happened to be amputees, paraplegic, wheelchair users, deaf, blind, neurodivergent, and neurotypical. I delved into dissecting the complexities of communication by exploring the powers of emotion, deep listening, and a thorough understanding of body language. I was obsessed with the endless ways one can create stories through the manipulation of words, visual design, physical movement, connection through relationships, and use of environment—or the lack thereof. Productions with Gallaudet University, choreographing and performing internationally with Infinity Dance Theatre (NYC), and having been a featured choreographer on Broadway in “Christopher Reeves’ First You Dream” opened my eyes to the importance of finding a variety of performers’ voices. Perhaps one of my most vivid experiences was with Dr. Maya Angelou, where she so humbly asked me, of all people, whether I thought any of her work made a difference in the world—at all? The matriarch of hope and inspiration wondered if her words mattered…I was dumbfounded. The ripples are still traveling in all directions…
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The idea of MANDY’S VOICE sparked after my film partner, Josh Hansbrough, made a documentary about the nonprofit organization “Peace of Heart” in Ponte Vedra, Florida. MANDY’S VOICE is a fictional narrative inspired by the true-life events of a few exceptional non-verbal teens re-
MY WORD
siding at the Peace of Heart community. Writer Sharon Y. Cobb leaned in to flesh out the story, and I was brought in to bring the script to life. Monique Madrid (producer), Ally Cloversettle (casting), and I auditioned a large number of very talented actors from Florida, Atlanta, and L.A., but the puzzle pieces weren’t fitting ,and something was missing from the story: authenticity. I was acutely aware of the scarcity on screens of stories that celebrate the real voices, character portrayals, and employment opportunities of individuals with differing abilities. The film’s message could have been lost due to a fundamental flaw in depicting it. We were determined to honor the message by casting truthfully. As a filmmaker, it’s part of my mission to open doors for others who might otherwise be overlooked and tell remarkable stories about real people working through adversity. I recall saying, “We don’t need thousands of people to audition, we just need the right few. We’re looking for them and they’re definitely looking for us.” The right doors opened! We assembled an incredibly courageous team from Florida and New York in the middle of a pandemic. Three out of the five cast members had never acted before. We agreed to rehearse and build camaraderie in a very non-conventional manner via Zoom for months
(which has its obvious pros & cons) to help navigate the complexities of acting and filming. The film was shot with strict public health protocols last July in Jacksonville, Florida. The amazing Rachel Barcellona poured her heart into the role of Mandy; she is a recent college graduate, actress, author, model, and international spokesperson for autism who was diagnosed at the age of three and was non-verbal herself until the age of five. The indispensable anchor of our cast is Karen Sillas, who garnered the Grand Jury Prize at Sundance for the feature film, “WHAT HAPPENED WAS…” that launched her into prime-time TV as a star in UNDER SUSPICION, WITHOUT A TRACE, LAW & ORDER CSI, and HBO’S THE SOPRANOS. We are introducing to the screen Crystal Thompson, the founder and Clinical Director of BELIEVE AUTISM in Jacksonville, Florida, where she tirelessly works with individuals with autism and their families. She also happens to be a Latin Dance performer and offers creative dance and art to students. Joining the cast from the Orlando area are Amy Nielsen and her son Barclay. Amy is a natural on-screen and mother of four children ranging from 33 to six. She spent nearly 20 years as an elementary and middle school educator. After Barclay was diagnosed with ASD, she started
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MY WORD
Big Abilities, her blog and podcast. She’s now a published author of two books with more on the way soon, and an invaluable Special Needs Parent Advocate. Through the making of MANDY’S VOICE, we successfully achieved what others in the entertainment industry have consistently dismissed as impossible—and persevered during COVID-19 on a shoe-string budget. MANDY’S VOICE isn’t simply a passion project. It’s a ground-breaking advancement in story and casting that demonstrates drive, heart, and vision of what is possible when equity and involvement of people with a variety of abilities is central to the production effort. It is true the portrayal on film and television of those with different abilities have almost tripled compared to the previous 10 years (about 3,000 films and shows). However, according to a study by Nielsen and the nonprofit organization RespectAbility released in July 2021, almost all of those titles still do not feature actors with disabilities. Approximately 95% of those roles have been portrayed by actors who are traditionally cast. I believe—I know—audiences are ready for more choices, no matter what category of happy marathon binge-watching geek we might fall into. The choice of visibility and inclusion in film and TV increases the number of relatable and fascinating stories we can all share and it promotes better understanding among all of us.
Hollywood producer Deborah Calla and writer-producer Allen Rucker have been working together for over a decade to resurrect the Media Access Awards—an award ceremony that honors entertainment industry professionals who have significantly advanced disability-related narratives. The MAA is now teaming up with Easterseals to expand its reach and broaden its mission. There are many additional platforms, large and small, that express the importance of valuing individuals for who they are—not for who they are not. So, you want to get involved yourself or for yourself or for a loved one, but don’t know where to start your research on diversity and inclusion in the entertainment industry? Here are some great resources for you to begin learning what’s out there: GADIM (Global Alliance for Media and Entertainment), The Kennedy Center—VSA, PA Department of Education—Inclusive Arts Education, and Alliance for Inclusion in the Arts, UCLA—National Arts and Disability Center. There are numerous talent agencies that specialize in representing individuals with disabilities—in fact, they’re looking for you or your loved one right now! Follow your dreams, share your talents, and let your voice be heard.
Roxanna Lewis’ creative approach to filmmaking springs from her expert understanding of motion, composition, and storytelling as a choreographer. Highlights include numerous commissions for the National Ballet of Guatemala and Infinity Dance Theatre—a non-traditional dance company featuring dancers with and without disabilities in NYC. Her ground-breaking work Dreambody is archived in the Lincoln Center Library for the Performing Arts and captured by renown action painter Terry Rosenberg. Her work has been presented across the US at the Kennedy Center, Lincoln Center Out of Doors, and the Department of Agriculture in Washington, DC, as well as for other international dignitaries and audiences in France, Germany, Scotland, Guatemala, Italy, Japan, Thailand, and Hong Kong. As an award-winning film director, Roxanna directed The Crossing (Cote de Pablo/ NCIS), The Shift, I Didn’t Know, Hear Me, and multi-media String Theory, which premiered at the Edinburgh Fringe Festival with Mandy’s Voice currently in post-production. She’s worked on additional projects with Island Records, SONY UK, Mpress Records, CNN.Com, The Discovery Channel, Showtime, Mindless Entertainment, DNA Productions, The Revolver Film Company, and Kilo Productions. Roxanna is also Founder/CEO of Roxxiedanz Productions, Inc., a boutique film and commercial production company that develops scripted and non-scripted TV series, documentaries, and short form content celebrating underrepresented voices, female-forward content, diversity, and inclusivity. Roxanna thrives on collaborations with visionary artists and creators that love to shake up the status quo. Photos courtesy of Nicole Beth, Dreambody (Kitty Lunn, Sonja Perreten) and John F. Kennedy Center archives. Websites: www.ROXANNALEWIS.com, https://www.mandysvoicefilm.com/ LinkedIn: https://www.linkedin.com/in/roxannalewis/ Facebook: https://www.facebook.com/roxanna.lewis.7/ Twitter: https://twitter.com/thereal_roxanna Instagram: https://www.instagram.com/roxannalewis/
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YOU ARE NOT ALONE ON THIS JOURNEY J OIN U S FO R FR EE Our mission is to educate, support, and energize families, caregivers, educators, and professionals while preparing all families for a healthy future.
EXCEPTIONAL NEEDS TODAY
exceptionalneedstoday.com
EXCEPTIONAL ADVICE FROM
MESHELL
I’m a Single Parent —Am I Ready to Date Again? By Meshell Baylor, MHS
“When you’re a single parent, don’t be afraid to get out there and date, and have a little bit of fun. We may be single parents, but we’re still human.”—Unknown
SINGLE PARENTS WEAR SO MANY HATS. THEY ARE CARETAKERS, ESSENTIAL WORKERS IN THE BUSINESS WORLD, AND MOST IMPORTANTLY, ADVOCATES FOR THEIR SPECIAL NEEDS CHILDREN. MANY SINGLE PARENTS ARE SO BUSY BALANCING THEIR WORK AND FAMILY LIFE THEY BARELY HAVE TIME FOR A SOCIAL LIFE. IT IS IMPORTANT FOR SINGLE PARENTS TO COMPREHEND THAT DATING CAN BE PART OF SELFCARE. HAVING A SOCIAL LIFE OUTSIDE OF BEING A PARENT IS NOT A CRIME. IN FACT, ACCORDING TO THE CDC (CENTERS FOR DISEASE CONTROL AND PREVENTION) STATISTICS, 64% OF PEOPLE PRACTICE THE SELF-CARE OF SOCIALIZING. DATING IS A FORM OF COMMUNICATION AND SOCIALIZING.
78 | Exceptional Needs Today | Issue 7
PARENTAL SUPPORT
Some parents may be single by choice, others because of a divorce or a separation. Some may feel it’s been quite a while since they have jumped back into the dating pool, and the fear of getting back into the dating game can be nerve-wracking. After being married for years and now a divorcee, I knew I needed to brush up on my dating skills. The last time I dated, two-way pagers and writing your number on a sheet of paper was how you asked. Dating has changed in the 21st century; dating apps are the new wave of the future. Apps such as eHarmony, Elite Singles, and Match are a new norm for meeting potential partners. However, there is still hope for love and friendship if online dating is not your cup of tea. There are so many fantastic events, activities, and places to meet someone. Dating is a key part of socializing and communicating to build friendships, connections, and possibly love. Although returning from a sabbatical may be scary, internally, you will know in your heart when you’re ready. Jumping back into the game may sound fun, but we must look closely at some important things that can help you build your dating confidence.
Know what you’re looking for Dating is not something that we as single parents should rush into doing. Do not be afraid to take your time. Jot down the little things that you are looking for, whether it’s the occasional conversations or an actual meet and greet at a paint and sip or group activity. Slowly define what you want and what you’re looking for in a partner, friendship, or future spouse. Make sure to maintain your privacy. Slowly learn who you are and what you like before you take the next step into dating.
Is online dating for you? If you are willing to try online dating, do your homework. Research the right website, define if the website shares the values you’re looking for in a future friend, and take a flattering picture of yourself if you wish to post it on your profile, but always be respectful to yourself and keep some decorum.
Places to go If online dating is not your cup of joe, then get out in the open. Looking for that special someone is not that hard, even if you are not tech-savvy and feel that online dating is not for you. Look for exciting places to meet new people. EventBrite.com is a new site with lots of event activities to mingle and meet new people, from Mardi Gras celebrations to new year’s parties. There are so many wonderful places to meet new people, such as jazz festivals or tasteful venues that have a single night. Check your local listings for great events to meet new people.
Make it a group thing If you still have jitters about online dating, going out into the community alone, have a group hang-out day. Your friends and loved ones want you to have a social life. It’s okay if you want to attend a dinner date with a group of friends or loved ones. It has been a while, and you may be nervous. Invite your friends to join you and your date for a movie, and when you feel comfortable, you can branch off. So, as we get ready for 2022 and brush up on our dating techniques, keep in mind that you are important and deserve to have a little fun in your life. If you are ready to date, you will feel it in your heart. Make time to get to know new individuals and share some positive memories. Get dressed up and paint the town, and when the ball drops, you will hopefully have someone smiling back at you as you enter the next new year. Meshell Baylor, MHS is a mother of four children—two of whom are on the spectrum. She serves her community as a social worker and community advocate within the Los Angeles area. She has a bachelor’s degree in Human Services from Springfield College and a Master of Science in Human and Social Services. Meshell continues to volunteer and give within her community while serving the special needs community. Website: http://meshellbaylor.wixsite.com/website Instagram: https://instagram.com/imalittlebigb?utm_ medium=copy_link
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