Exceptional Needs Today Issue 8 by ExceptionalNeedsToday

Exceptional Needs Issue 8

T O D AY

IGNITING A NEW WAVE OF ACCESSIBILITY IN THE TRAVEL INDUSTRY

RECOGNIZING PARENTAL SELF-BLAME: TIPS TO SUPPORT PREVENTING ABUSE FOR INDIVIDUALS WITH DISABILITIES

AWARENESS, ACCEPTANCE & INCLUSION Eight Tips for Keeping Your Child in the “Growth Zone”

How Can I Help My Stuttering Child?

FAC TS NEE ABO DS UT TRU SPE STS CIA L

WAYS FAMILIES CAN BENEFIT FROM AN INCLUSIVE AND ADAPTIVE CHURCH

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.

Contents

Issue 8 FIVE WAYS FAMILIES CAN BENEFIT FROM AN INCLUSIVE AND ADAPTIVE CHURCH

Jeanetta Bryant Learn how a supportive church community can make a significant difference for many special needs families.

CREATING AN AUTISM-FRIENDLY COMMUNITY BY INTEGRATING BUSINESSES WITH SPECIAL NEEDS SUPPORT

Rebecca Jeffreys Discover how Becky Large has championed staff awareness and support for autism in select businesses through the Champion Autism Network card.

WONDERFUL WAYS TO CELEBRATE WHILE ACCOMMODATING SPECIAL NEEDS Diana Romeo Learn how a mother with an autistic son finds creative ways to host or attend parties.

17 SAFETY GOALS WITH NICOLE PREVENTING ABUSE FOR INDIVIDUALS WITH DISABILITIES AND THE VALUE OF OPEN CONVERSATION 20

RECOGNIZING PARENTAL SELF-BLAME: TIPS TO SUPPORT FAMILIES AND CAREGIVERS

EIGHT TIPS FOR KEEPING YOUR EXCEPTIONAL CHILD IN THE “GROWTH ZONE” Temple Grandin, PhD and Debra Moore, PhD Recognize the importance of utilizing the “Growth Zone” when teaching your child and learn ways to differentiate it from other states of being.

25 IT TOOK 24 YEARS AND A GLOBAL PANDEMIC TO KNOW MY DAUGHTER

28 EXCEPTIONAL ADVICE FROM MESHELL PARENT ENGAGEMENT IN Judith Contreni Scott SCHOOLS CAN SUPPORT Enjoy a heartwarming glimpse EDUCATIONAL SUCCESS at how an exceptional needs mother was able to truly bond with her daughter when COVID-19 upended her family’s routine.

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Meshell Baylor, MHS Learn six key ways parental engagement at a child’s school can help them succeed.

Nichole Moehring Find out why it’s imperative to create a dialogue and how Voices of Change 2018 can help prevent abuse of children with disabilities.

By Dr. Chris Abildgaard, EdD, NCSP, LPC, NCC Discover how self-blame regarding a diagnosis can manifest and why it is essential to change this way of thinking.

32 REFRAMING OUR THOUGHTS AROUND SELF-CARE WHEN THERE ARE EXCEPTIONAL NEEDS Nicole Dauz Discover the importance and potential of customized self-care as explained by an autism mom and caregiver coach.

35 EXCEPTIONAL BOOKS EXPECT A MIRACLE: UNDERSTANDING AND LIVING WITH AUTISM You won’t want to miss this inspiring book, written from the different perspectives of an autistic young adult, David Petrovic, BA, MAT, and his mother, Sandy Petrovic, RN, BSN, as they face everyday challenges and victories.

38 WAYS TO ENJOY SPENDING TIME WITH YOUR EXTENDED FAMILY Faigy Liebermann, AACC, PCAC, ACC Discover how ADHD can affect holiday stress outside of the everyday experience of a diagnosis and the importance of ongoing self-care.

41 BRINGING BEHAVIOR INTERVENTION PLANS INTO THE 21ST CENTURY Connie Persike, MS, CCC/SLP A thoughtful look at what a behavioral intervention plan should convey to help all students flourish.

46 KATE MAKES IT GREAT! UNDERSTANDING AND ADDRESSING OVEREATING WHEN THERE ARE EXCEPTIONAL NEEDS Kate C. Wilde Discover two common root causes of overeating in special needs children and adults, as well as options for working through each.

49 EXCEPTIONAL BOOKS TRANSITIONING FROM A PEDIATRICIAN TO AN ADULT PHYSICIAN Longtime advocate Tammy Flynn’s eBook is an outstanding tool for young adults and the people who love them as they transition to adulthood with complex and chronic medical issues.

51 HOW CAN I HELP MY STUTTERING CHILD? Dr. Ronald I. Malcolm, EdD Learn top strategies to support, encourage, and improve the communication abilities of a child who stutters.

54 TWICE EXCEPTIONALITY: A RETROSPECTIVE Marlo Payne Thurman, PhD Meet the author of Autism is the Future as she shares her experiences in advocating and advancing support for both gifted and disabled individuals as a twiceexceptional person herself.

59 NATURE NOTES SENSATIONAL SENSORY OUTSIDE ADVENTURES—PART TWO Amy Wagenfeld, PhD, OTR/L, SCEM, EDAC, FAOTA Explore nature and toe-dip into sensory integration while considering how to nourish the foundational sensory systems.

63 IGNITING A NEW WAVE OF ACCESSIBILITY IN THE TRAVEL INDUSTRY David Flake Having trouble finding truly accessible vacation rentals? See how Becoming rentABLE is changing the travel industry.

66 SEEING YOUR WHOLE CHILD WHEN THERE IS A DISABILITY Karen Kaplan Great reminder to never lose sight when managing daily life with a special need or disability diagnosis.

69 EXCEPTIONAL BOOKS SIMON’S VOICE Autism mom and advocate Meshell Baylor shares a charming, illustrated story of an autistic boy exploring his identity.

70 FINANCIAL FOCUS FOUR ESSENTIAL FACTS ABOUT SPECIAL NEEDS TRUSTS Ryan F. Platt, MBA, ChFC, ChSNC, CFBS Learn four critical facts you need to know about Special Needs Trusts to ensure a secure future for your loved ones.

73 THE NEVER-ENDING POWER OF SPECIAL NEEDS PARENTING Melanie K. Milicevic Acknowledge the incredible strength and fortitude it takes exceptional needs families, especially the caretakers, to continue forging ahead every day and the massive impact even the smallest act of outside kindness can cause.

76 PREVENTING THE MALTREATMENT OF CHILDREN WITH EXCEPTIONAL NEEDS Nicole Moehring Educate yourself on the grim reality of frequent abuse of those with exceptional needs, preventative measures, and how to report its occurrence.

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 Editorial Support: Ganesh Dhungana Copyeditor: Derik Hicks Graphic Designer: Patrick Gwayi Professional Consultants Chris Abildgaard, LPC, NCC, NCSP 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 advertisingdir@exceptionalneedstoday.com advertising@exceptionalneedstoday.com submissions@exceptionalneedstoday.com editorial@exceptionalneedstoday.com

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Exceptional Needs Today | Issue 8 | 5

From the Editor’s Desk Awareness. Acceptance. Inclusion. These three words drive and characterize our mission here at Exceptional Needs Today. Creating awareness is the first step toward understanding and acceptance, and together, we can create a pathway toward support and inclusion. I am continually motivated by self-advocates, parents, educators, doctors, and therapists who experience or witness needs in the community and choose to dive into the activist role. Their energy drives and inspires as they become catalysts for change. This month’s cover features a charming 11-year-old named Lindsey Bryant diagnosed with autism at age three. Several years ago, Jeanetta Bryant, Lindsey’s mother, launched the nonprofit Abilities Workshop, Inc. to help parents, teachers, and pastors receive much-needed guidance and support. Too often, Jeanetta says, families can feel isolated by a diagnosis instead of being made to feel welcome. But as she explains in her article, Five Ways Families Can Benefit From an Inclusive and Adaptive Church, this doesn’t have to be the experience when communities proactively take steps toward inclusion. I am also delighted to introduce you to Lorraine Woodward, a lifelong disability advocate committed to shifting the world of accessibility through education and action. As Lorraine explains in David Flake’s article, Igniting a New Wave of Accessibility in the Travel Industry, travel opportunities with her family were near impossible for years, as she and her two sons required wheelchair accessibility. Unfortunately, while many hotels offer Americans with Disabilities Act (ADA) accessible hotel rooms, the space and setup cannot always accommodate the real needs of families. Today, Lorraine spends her time running Becoming rentABLE, a television show and social media platform she created dedicated to advocating for and creating accessible short-term rental properties, removing barriers across the United States. Another campaigner for change is Becky Large, whose Champion Autism Network (CAN) card program is making vacations and outings a reality for many autism families. The CAN card acts as a discreet way to let a business know you have a family member who may need thoughtful accommodations, such as a quiet place to sit in a restaurant. To learn more about Becky and her vision, be sure to read Rebecca Jeffreys’ interview, Creating an Autism-friendly Community by Integrating Businesses With Special Needs Support. Have you had the opportunity to read autism advocates Temple Grandin, PhD and Debra Moore, PhD’s latest release, Navigating Autism: 9 Mindsets for Helping Kids on the Spectrum? This book provides an excellent look at what makes each child wonderfully unique and offers a fresh approach to navigating autism. For example, one of the chapters focuses on capitalizing on a child’s “growth zone,” when a person has the most significant oppor-

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tunity to develop. When a child’s growth is tapped in the right environment and time, it can maximize success. Be sure to read their exclusive piece called Eight Tips for Keeping Your Exceptional Child in the “Growth Zone” as they introduce the concept and show ways to put this theory into action. Are you or someone you love feeling a little overwhelmed these days? You’re not alone, as the pandemic still significantly affects our daily lives, impacting physical, emotional, and mental health. For some much-needed support, be sure to read caregiver coach Nicole Dauz’s tips in Reframing Our Thoughts Around Self-care When There Are Exceptional Needs. While she says self-care may not instantly transform your life, it can be a road that leads to patience, positive energy, and joy. Karen Kaplan’s piece, Seeing Your Whole Child When There Is a Disability, reminds families not to lose sight of loved ones when managing a diagnosis. This issue is brimming with guidance, including essential facts about special needs trusts, ways to bring behavior intervention plans into the 21st century, and ways to enjoy spending time with your extended family. Plus, we highlight topics such as ways to recognize and manage parental self-blame, the benefits of parental engagement at school, understanding overeating in children with exceptional needs, and ways to improve the communication abilities of a child who stutters. In addition, the author of the book Autism Is the Future, Marlo Payne Thurman, PhD, has generously shared her experiences in advocating and advancing support for both gifted and differently-abled individuals as a twice-exceptional person herself. We look forward to working together to promote awareness, acceptance, and inclusion in the exceptional needs community while making significant changes for tomorrow. Best,

Amy KD Tobik

Editor-in-Chief, Exceptional Needs Today Publisher, Lone Heron Publishing

PLEASE JOIN OUR EXCEPTIONAL COMMUNITY

EXCEPTIONAL EDUCATION

Eight Tips for Keeping Your Exceptional Child in the

“Growth Zone”

By By Temple Grandin, PhD and Debra Moore, PhD IN OUR NEW BOOK NAVIGATING AUTISM: 9 MINDSETS FOR HELPING KIDS ON THE SPECTRUM, WE DEVOTE AN ENTIRE CHAPTER TO THE IMPORTANCE OF “GROWTH ZONES.” IN THIS ARTICLE, WE’LL INTRODUCE YOU TO THE CONCEPT AND SHOW YOU WAYS TO PUT IT INTO ACTION.

ach of us—child or adult—has our own unique growth zone. This is the specific environment, or zone, where a person has the greatest chance to develop—a set of conditions that, if met, maximize the chances a parent, teacher, or clinician will succeed in helping a child. There are two factors that combine to create a growth zone.

First, like a vulnerable new plant, a child can’t grow unless they’re surrounded by favorable, nurturing conditions. These supportive frameworks need to be put in place proactively and intentionally—not after problems arise or simply because that’s what is available. Some of the conditions that nurture kids are standard and work with most children: positive reinforcement, words

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EXCEPTIONAL EDUCATION

of encouragement, and predictable routines, for instance. Your child, though, may have other specific needs. For example, Susie, who has chronic anxiety, may need to run through a set of relaxation exercises before trying a new task. Johnny, who struggles to sustain attention, may require multiple breaks embedded into even short activities. Second, kids can’t grow if we allow negative, growth-stunting influences to get in their way. We need to protect them much like farmers think ahead to protect crops from adverse conditions like insects or disease. Some conditions universally interfere with development. Harsh criticism, lack of clear instructions, and failure to expose a child to growth experiences will hinder any child. Your child may be susceptible to other unique conditions. Amelia, who is very sensitive to sound, must learn in a quiet environment or wear noise-canceling headphones. For her, noise is incompatible with a growth zone. Jason, who is an extreme perfectionist, cannot be expected to try new things if those around him make a big deal of mistakes. Autistic children—due to sensory and information processing differences—are especially sensitive to their surroundings. Their ability to self-regulate, take in and process data, and store and remember that information all depends on their internal states and the conditions of their environment. Here are eight tips to help identify and keep your child in their growth zone: 1.

Make sure your child is not in their “fear zone.” Realize they may zoom into fear in an instant. Surprises, bullies, sensory overload, and untreated anxiety or depression keep kids in a hyper-aroused state of fear. Eliminate or manage these conditions before expecting a child to learn or try new things. Brains don’t work in the fear zone. Language falters, memory goes out the window, and incoming information suddenly becomes uninterpretable. Recognize less obvious ways your child may signal they’re in the fear zone. A child who is usually friendly may retreat or become snappy. One who’s usually comfortable in a particular environment might suddenly refuse to go there. A kid who, most days, is coordinated might suddenly seem clumsy. Fear even highjacks the brain’s ability to transmit messages to muscles successfully. Don’t mistake your child’s “comfort zone” for their growth zone. It can seem desirable for your child to feel safe and in control, but this isn’t the goal if you want them to reach their potential. True growth doesn’t happen when we’re completely comfortable. It happens when we’re being appropriately stretched. New activities and tasks bring uncertainty, which is different from fear. Uncertainty plus nurturing conditions lead to a sense of mastery and confidence. Learn to tolerate your child (and you) feeling uncertain.

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Always scaffold tasks. Teach one part of a task, then add another small bit to it. Wait until the child has mastered and can consistently perform a task before adding new material or a different task. Introduce new activities by asking the child to perform a task they are already capable of doing. It’s not a waste of time; it’s creating a foundation of confidence.

Keep your child actively engaged rather than a passive recipient of new information or experiences. Visual and hands-on demonstrations are better than verbal instruction alone. Many kids learn best when they are moving or sitting in an unconventional way. Children with attention challenges need to move their muscles. Many anxious or depressed kids need this too. Otherwise, their brains tune out.

Know and work with your child’s way of thinking. If you’re not familiar with the types of thinkers, educate yourself. If you’re not informed that others (including your child) may think in different ways than you, you’ll

EXCEPTIONAL EDUCATION

try to teach them the way you would learn. There are four basic ways of thinking (Grandin and Panek, 2013), so odds are you’ll be wrong. Your child may be an object visualizer who thinks in photo realistic pictures (similar to Temple Grandin) and is good at art and mechanics, a visual-spatial mathematical pattern thinker who is good at math and music, a verbal word thinker who thinks in words, or an auditory learner who prefers taking in information by listening. Or, like many kids, they may be a mixture of different ways of thinking. 7.

The “learning zone” is good, but it’s still not the growth zone. When children are in the learning zone, some parents and teachers think that’s as good as it gets. The child is trying out new things; they’re interested, putting out the effort, and showing some confidence. The growth zone is one step beyond this and is when the child is excited about stretching themselves. They want to learn more, and they start setting their own goals. The growth zone is the goal for every child. It may look different for children of different cognitive or verbal levels, but it is still an appropriate goal (Grandin and Moore, 2015).

Kids will inevitably move back and forth between the zones of fear, comfort, learning, and growth. Just stay vigilant and adjust to help them return to their growth zone. Go back to the basics of self-regulation and eliminate interfering conditions like sensory overload. Support your child with kind and encouraging words and clear, direct assistance. Take a step back to easier tasks until mastery returns. Then get back to appropriately stretching them from within their growth zone!

Dr. Debra Moore is a psychologist who has worked extensively with children, teens, and adults on the autism spectrum. She has retired from active practice and devotes her time to writing and volunteering. She and Temple Grandin have co-authored two books: The Loving Push: How Parents and Professionals Can Help Spectrum Kids Become Successful Adults (2016) and Navigating Autism: 9 Mindsets for Helping Kids on the Spectrum (2021). She and Temple have recorded multiple videos that can be viewed on YouTube, including informal chats from each of their homes.

References: Grandin, T., & Panek, R. (2013). The autistic brain: Helping different kinds of minds succeed. Boston: Houghton Mifflin Harcourt. Grandin, T., & Moore, D. (2015). The loving push: How parents and professionals can help spectrum kids become successful adults. Future Horizons. Grandin, T., & Moore, D. (2021). Navigating autism: 9 mindsets for helping kids on the spectrum. W.W. Norton and Company.

Dr. Temple Grandin is a professor of Animal Sciences at Colorado State University. She has revolutionized the handling of livestock around the world. She is a prolific writer and frequent speaker on both animal science and autism. As a toddler, she had multiple developmental delays, including speech, and was diagnosed with autism. Her mother was told Temple would need to be institutionalized, but numerous hours of speech therapy and intensive training ultimately enabled her to speak. Her life story was depicted in the award-winning HBO movie Temple Grandin, and she was recognized in 2020 as one of the top 10 college professors in America.

KATE MAKES IT GREAT!

ASK KATE C.WILDE YOUR QUESTIONS

Email submissions@exceptionalneedstoday.com with your questions and concerns regarding exceptional needs and our expert will respond through her column.

Exceptional Needs Today | Issue 8 | 9

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PARENTAL SUPPORT

Five Ways Families Can Benefit From an

Inclusive and Adaptive Church

By Jeanetta Bryant

WE WERE THE “LUCKY” ONES. WHEN OUR DAUGHTER WAS DIAGNOSED WITH A LAUNDRY LIST OF ACRONYMS AND LABELS, WE HAD THE SUPPORT OF A MATURE AND THRIVING SPECIAL NEEDS MINISTRY. WE FOUND PROGRAMS THAT WERE TAILOR-MADE FOR OUR CHILD AND ALLOWED US THE OPPORTUNITY AS A FAMILY TO ATTEND CHURCH REGULARLY. AS A MATTER OF FACT, GOD USED HER DIAGNOSIS TO BRING US BACK TO HIM. WITH A VOLUNTEER WHO SHOWED UP EVERY SUNDAY TO BE OUR DAUGHTER’S “BUDDY,” WE SUDDENLY FELT ACCOUNTABLE AND WERE DETERMINED TO SHOW UP CONSISTENTLY. Exceptional Needs Today | Issue 8 | 11

PARENTAL SUPPORT

Showing up regularly ultimately led to me being baptized again as an adult and for us to create a nonprofit that helps parents, pastors, and teachers find the resources to help children with special needs be their best.

play as we did when we were children, but there are benefits to them participating in “parallel play” and simply sharing space with someone else. These moments allow for growth with other children and in knowledge of God.

I am steadfast in believing the church is a huge factor in helping children and families impacted by special needs reach their full potential, and I have listed five reasons.

3. Respite for parents: One of the most common practices for families with children with special needs is to either alternate who stays home with the child while the other attends church or skip it entirely. This is devastating. Parents need the ability to focus on themselves, to take a break from being the constant caregiver, to replenish their mental and physical capacity. When a church offers a ministry that cares for the child, the parent can relax. They can practice “self-care,” even if only for an hour or so on Sunday. If parents can take time together, it can impact the dynamic in the home, create stronger marriages and relationships, and ultimately help them be better caregivers to the child.

1. Community: Isolation is a real thing. So many families feel they can no longer attend church, ballgames, recitals, plays, festivals, or other community events because they have a child who may act out, elope, cause a distraction, or, worst of all—harm themselves. It is true this role as a special needs parent can and will be isolating at times, which is even more reason for a church to create a program of support for these families to have time with the community where they can interact, and their child can be cared for. The beauty of social settings not only allows us to understand we are not alone but that there are others on this journey too. It creates an atmosphere where our kids (who may lack social skills) can learn proper engagement behaviors. 2. Child friendships: We often seek other families who understand our unique situations. The church is often positioned to bring families together and create friendship opportunities for children who struggle to engage in traditional friendships. Many of our kids may not converse or

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4. Love and encouragement: Who doesn’t need love and encouragement? It is a daily struggle to manage medical care, therapy options, and educational support, along with the emotional toll of worry for the future. Even the best parents will confess that even if they can keep focused on the positive, they still have hard days. When a church family comes together, love and encouragement are a tangible product. There is safety in saying your worries aloud and having others come to your aid. Knowing someone is praying for you and that they care has a pow-

PARENTAL SUPPORT

er all its own. The church may not understand or fully appreciate your daily tasks, but they can sympathize and show you they care. On hard days, that is a lifeline! 5. A deeper relationship with God: Ultimately, the real “lifeline” is a relationship with God. He is the one who understands, cares about, and fully loves you. The church can provide some benefits of knowing God, but the reality is that once you have the time and capability of knowing your child is cared for, then you can focus on learning about God, deepening your relationship with Him, and start understanding a new perspective. You have a purpose, you matter, and you were created with intention—

so was your child. Find the time. Find a church that can support you or encourage your church to build a program. You are worth it. Your family is worth it, and you have the potential to help others in ways you can’t imagine. I say all of this to you because these are ways we have personally benefited from a strong Access Ministry program. After countless conversations with other parents, I have found these truths are in their lives too. I wish you the peace and joy that can be found in a church program and a better relationship with God.

Jeanetta Bryant is the Founder and Executive Director of Abilities Workshop, Inc. She is dedicated to helping special needs families find answers and aiding children impacted by special needs diagnoses be their best. Jeanetta is an author, developer, and advocate. As a mom of two children, one with autism spectrum disorder (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/

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EXCEPTIONAL ADVOCATE

Creating an

Autism-Friendly Community

by Integrating Businesses With Special Needs Support By Rebecca Jeffreys IMAGINE BEING ABLE TO GO OUT TO DINNER WITH YOUR FAMILY EVEN IF YOU HAVE A CHILD WITH AUTISM. IMAGINE YOU RECEIVE UNDERSTANDING AND ACCOMMODATIONS FOR YOUR CHILD AS NEEDED. IT SEEMS TOO GOOD TO BE TRUE, BUT THIS IS THE TRUE NATURE OF MANY BUSINESSES IN SURFSIDE BEACH AND MYRTLE BEACH, S.C., AN AUTISM-FRIENDLY COMMUNITY AND TRAVEL DESTINATION.

his didn’t happen by accident. It happened due to the sheer determination of an autism mom and the vision she had for her family and others. She wanted to be able to experience activities “normal” families did. She wanted to be able to vacation, dine out,

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and have fun with dignity and support from the staff at such public spaces. And she wanted other families also to have this opportunity. Her name is Becky Large. Becky is the founder of Champion Autism Network (CAN). She

EXCEPTIONAL ADVOCATE

is a real-life champion for so many families, including mine. When I moved my family to Surfside Beach, our son had just turned 22 and had never called anywhere but Massachusetts home. He was nervous about moving and repeatedly declared no one would welcome him because of his autism. My husband and I knew that wasn’t true, but CAN made the transition easier. When we came to close on our house, we noticed signage at various restaurants stating they were “Autism Friendly.” We weren’t sure what that meant, but we saw there was obviously an effort in the community to embrace families with autism. We phoned our son and let him know what we had learned. It was a great relief for him! As soon as we settled in our new home, we joined CAN and started visiting the businesses that participated. The person behind all of these signs was the local champion, Becky Large. I had the chance to chat with her recently in Surfside Beach, S.C., where her office is located. We met at a local, autism-friendly hotel right on the Atlantic coastline, where I interviewed her while also sharing the impact CAN made on my family. Below is a transcript of our discussion.

Becky, can you tell us about your journey as an autism mom? My son was diagnosed at age four. He was our firstborn and the joy of our lives. It was not until preschool that the teachers pointed out something was wrong and asked me to consider medication. That was out of the question for us! Some of the behaviors the teachers saw were lack of understanding for personal space (space invader) and inappropriate behaviors. We had him diagnosed, and it came back as attention-deficit/ hyperactivity disorder (ADHD). We decided to pull him from preschool and wait for kindergarten in the fall. His next diagnosis was pervasive developmental disorder—not otherwise specified (PDD-NOS), and he was described as “quirky” instead of being given a medical label. By age seven, his diagnosis changed to Asperger’s syndrome and ADHD, which meant we finally had a label that would grant him an IEP (Individualized Education Plan) and the ability to get services at public school. At age nine, our family moved to Surfside Beach, S.C. A new service of pragmatic speech was added to his education, and things were getting much better, so I could start dreaming about how I could serve other families.

How did Champion Autism Network come into existence? Well, once we moved to Surfside Beach, we noticed there were no activities in the area for autism families. It felt socially isolating. I attended a forum sponsored by the Lowcountry Autism Foundation (LAF) in Charleston, S.C. At the forum, I learned about tools, services, and things I never knew about in the autism world. So when I got back home, with the help of the LAF, I started offering sensory-friendly movies in 2013. To make it sensory-friendly, we would have the lights up, the

sound down, and people were free to move about. There were 12 people in attendance at the first showing. Eventually, LAF opted to stop sponsoring these events, but I knew the families still needed an outlet. I continued to reach out to the local business community with the goal of encouraging more autism acceptance. Through an autism awareness campaign, I did speaking engagements, public service announcements, public relations, and developed a social media presence. In 2015, I wrote a grant with SOS healthcare to start the ACE program to train Horry County restaurants to be autism savvy. In 2016, with a successful start, I made CAN, a non-profit that could apply for grant money, accept donations, and collaborate with other businesses that were community-centered. CAN’s main purpose was to offer families opportunities to go out to autism-friendly settings such as movies, restaurants, trampoline parks, water parks, museums, and more. The beauty of CAN’s location is that it is so close to a vacation destination, which means numerous opportunities exist for collaboration.

How exactly does the CAN card help families? The CAN card acts as a discreet way to let a business know you may have a family member with autism. By simply showing them the card, the business knows you may need a quiet place to sit or another accommodation to make for an enjoyable visit. Each of the businesses has been trained to help in many ways, and they offer discounts to CAN families. Everything at CAN has to be a win for our families, a win for businesses, and a win for CAN. We are providing an economic impact.

Is the CAN card available everywhere? Presently it is not, but that’s my big goal! I would like to see the CAN logo around the world. That would mean we are big dogs, and we are achieving our goal! One national company that already participates with us is Bluegreen Vacations. There are five Bluegreen resorts in Myrtle Beach and over 40 more around the USA ready to welcome autism families by offering accommodations such as curbside check-in, room adjustments as needed before you arrive, and a safety plan in place

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EXCEPTIONAL ADVOCATE

for an episode or elopement. All staff are made aware that an autism family is present. Families can also bypass the timeshare presentation. The CAN card family is continuously growing, and more businesses are understanding the economic impact of being able to provide for autism families. Businesses can call Becky to participate, get training, and even be an affiliate by selling training modules to other businesses in their community. Becky continues to bring more awareness to autism and has

been featured on Travel + Leisure, NBC Nightly News, Associated Press, and a BBC One Documentary. She makes regular appearances on the local Myrtle Beach news as well, sharing the latest updates and events at CAN. She can often be sighted in her CAN mobile, zipping around Surfside Beach or participating in community events. To learn more about the CAN card, visit www.championautismnetwork.com or email Becky at becky@championautismnetwork.com.

Rebecca Jeffreys, author and personal coach, is an autism mom on a mission to help other moms improve their emotional resilience and well-being. In her book, You Were Made for This—Finding Courage and Intuition for Raising a Child with Autism, she shares encouragement and guidance for keeping a healthy mindset in motherhood. In addition to writing blogs and guest posts for other autism organizations, she hosts a podcast titled The Caretakers which highlights people who make the world a better place. A few of her guests include speech therapists, behaviorists, spiritual leaders, authors, and other autism moms. Additionally, she has spent over 35 years teaching music to children and adults of all ages. Website: https://www.sproutinghealthyfamilies.com/ Facebook: https://www.facebook.com/acalmingguide YouTube: https://youtube.com/channel/UCUlOPEXdDZh5O1O_LKjRyhQ Photo: Rebecca Jeffreys and Becky Large in front of one of the Champion Autism Network participating businesses in Surfside Beach, S.C.

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TRAVEL AND RECREATION

Wonderful Ways To Celebrate While

Accommodating Special Needs By Diana Romeo

SOCIAL GATHERINGS ARE DIFFICULT ON SO MANY LEVELS FOR THOSE WITH SPECIAL NEEDS. THERE ARE A VARIETY OF ISSUES THAT MAKE IT COMPLICATED, INCLUDING SOCIAL ANXIETY AND SENSORY ISSUES, SUCH AS LOUD NOISES AND CROWDS. BASED, IN PART, BY MY SON’S LACK OF INVITATIONS, IT SEEMS A LOT OF SPECIAL NEEDS KIDS DON’T HAVE OR GET INVITED TO PARTIES, AND I THINK THAT’S A SHAME.

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lmost everyone likes to be celebrated in some way and to feel they are special. I think a party or some type of celebration is possible if special accommodations are made, and there is a lot of flexibility in how it’s done. If need be, throw tradition out the window. Who says the party person needs to be dressed up? Frills and itchy, confining clothes do not a party make. The most important thing is that the honoree is happy. So don’t worry who’s going to think, “Oh my gosh! That’s what they’re wearing?” It’s not important what anyone thinks except the celebrant. There are substitutes for everything, so if your kid doesn’t like cake, then everyone else can have cake, and they can have whatever their special thing is. Cheese string? Sure. Birthday Pineapple Chunks arranged in a smile formation? Why not? If there are issues with a lack of guests to invite, this is a place where you can also be flexible. If there aren’t friends, invite family or try the neighbor’s kids. (They’re a little younger or older? So, what?) Invite the whole class. Probably not everyone will come, but if they do, welcome them. Barring having friends the same age, there’s nothing wrong with having adults to celebrate with. The number of people at the party doesn’t matter either. Who needs more than one good friend, anyway? There are lots of ways to celebrate. My son has autism, and over the years, we’ve done different things. One year, we took two friends to have ice cream. My son got ice cream—and he was happy. One year I was wracking my brain trying to come up with something different to do to make his birthday special. He loves balloons, so I filled his room with balloons. It was beautiful. For his 10th birthday, I wanted a “real” party. Yes, I wanted a proper party, not him. Well, maybe he did, but he didn’t have the communication skills to tell me. I booked a party at one of those big bouncy house places. I invited cousins and everyone from his special needs karate class, even the kids we didn’t know so well. He was gluten-free at the time, so I brought his special pizza and cupcake, and everyone else had regular. I knew this was a chancy thing to do. It could have been a disaster, and I did a lot of praying beforehand. It actually went great! Everyone had a good time, including my double-digit birthday boy. Whew! Sometimes you don’t know until you try. A word about reactions: one facet of my son’s autism is that sometimes he’s not very reactive. He is not robotic, but he doesn’t always, okay, doesn’t usually react how others without autism would. He’s not going to say, “Thanks for the party! I had a good time.” He may not interact much. He may not smile. That doesn’t mean he’s not enjoying himself. Sometimes at the moment, he’s overwhelmed. When I ask if he had fun at his celebration, the answer is always “Yes!” And if I ask if he wants to go to a party or have one, the answer is always “Yes.” I suspect this is mostly about getting to eat cake, but whatever!

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My boy has meltdowns at times, and they are pretty loud. He is sometimes self-injurious and bites his arms. He can occasionally be aggressive towards others. Early on, I adopted the attitude that we would try things. I would set my expectations low and hope for the best. Sometimes it worked out beautiful-

TRAVEL AND RECREATION

ly, and sometimes not. He deserves and needs to go out into the world and have experiences, and frankly, so do I. If he’s having a hard time, we take a break and step outside. If that doesn’t work, we pack it up and go home. But we tried. Flexibility is the name of the game. I don’t always feel like there is a place in the world for my son. If I hide him away at

home, then he cannot learn how to act in public. And if the public doesn’t see him, they cannot learn about him. I’m determined to make a place in the world for my son, and that starts with celebrating him not only, but especially on, his birthday.

Diana Romeo is a proud, full-time, stay-at-home mother of two children. For 19 years, she has been on the front line of mothering a very sweet boy who falls on the moderate-to-severe side of the autism spectrum. She is also a mother to a sweet and drama-filled 17-year-old daughter. She recently published her first book, From an Autism Mom with Love. She previously published articles describing her family’s adventures in autism in Autism Parenting Magazine and Exceptional Parent Magazine. She has a degree in business management and has worked in human resources. Facebook: https://www.facebook.com/dianalromeo/ Purchase: https://www.amazon.com/Diana-Romeo/e/B08FCSMBWJ

Exceptional Needs Today | Issue 8 | 19

SAFETY GOALS WITH

NICOLE

REDUCING THE RISK OF ABUSE WITH CHILDREN WITH DISABILITY

Preventing Abuse for Individuals With Disabilities and the Value of Open Conversation

By Nicole Moehring

s a parent, when our child is diagnosed with a disability, the last thing on our mind is that our child is now more vulnerable to being the victim of abuse. In fact, how could it even enter our minds? It certainly never entered mine. Not to mention, the subject of abuse is “taboo,” and unfortunately, very few doctors talk to parents about the national statistics. The United States Department of Justice reports that one out of three girls and one out of five boys will be sexually abused by the time they’re 18; this rate is even higher among children with disabilities. According to one study, children with disabilities are three times more likely to be abused than their peers without disabilities, while children with intellectual and mental health disabilities have nearly five times the risk of being sexually abused.1 Many times, the perpetrator is the child’s primary care source, a family member, or someone the family or child knows. This is unacceptable! As parents, we have to protect our children!

What is abuse? Abuse is anything that causes direct harm to an individual in the form of economic, emotional, financial, psychological, physical, sexual, or verbal damage. Child abuse does not discriminate based on ethnicity, gender, religion, or social standing. What can we do to prevent abuse from happening to a child with a disability? Reducing the risk of abuse begins at home. We need to know the best ways to protect our vulnerable children. Parents need

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to become educated with various methods of reducing the risk, which will allow them to increase awareness and educate their children, caregivers, and anyone who has direct contact with their child.

Voices of Change 2018 (VOC18) Education Programs For parents VOC18 is developing a unique educational program for parents/guardians of children with disabilities. This program will provide the necessary tools for communicating with their child and their caregivers. It will also offer abuse-prevention techniques, what to do if your child has disclosed abuse, and procedures for reporting abuse, as well as supports and resources.

For children Often, children with disabilities do not realize abuse is happening. Perpetrators will also threaten children, so they are afraid to tell anyone they were abused. This allows the abuse to continue, and, as a result, the child more than likely will suffer from extensive trauma. Our programs are being developed uniquely for the cogitative levels of mild, moderate, and intense needs. I didn’t realize how vulnerable my son was to abuse because no one talks about it. I believe with proper education, I would have been better prepared and able to help my son and our family.

SAFETY STRATEGIES

Our educational and training programs will be interactive between children and their parents or guardian. Within the education program for children, the topics will include: 1. 2. 3. 4. 5. 6. 7.

Body safety Boundaries Good photos vs. bad photos Safe touching vs. unsafe touching Creating a child’s safe circle How do you know if you’ve been abused? If a child has been abused, how to tell someone

8. The difference between secrets and surprises 9. Identifying, expressing, and understanding feelings 10. Preparing children to be their own protector Please visit our website, listed below, to learn more about our upcoming programs. They are being co-written by parents, educators, medical professionals, and law enforcement. “Just because the topic of child abuse is uncomfortable, doesn’t mean we shouldn’t be talking about it. Child abuse is a global pandemic. We don’t have an option not to talk about it. Our children are in danger if we don’t.”—Nicole Moehring

References Smith, N., & Harrell, S. (2013). Sexual abuse of children with disabilities: A national snapshot. Center on Victimization and Safety, Vera Institute of Justice. 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-of-change-2018/ Pinterest: https://www.pinterest.com/voicesofchange2018/_created/ Email: info@voicesofchange2018.com

HOW CAN YOU HELP? Exceptional Needs Today is funded entirely by advertisers and sponsors. Please go to https://exceptionalneedstoday.com/support/

to help keep the magazine a FREE resource.

Exceptional Needs Today | Issue 8 | 21

PARENTAL SUPPORT

Recognizing Parental Self-Blame:

Tips to Support Families and Caregivers By Dr. Chris Abildgaard, EdD, NCSP, LPC, NCC I RECENTLY SPENT TIME WITH A FAMILY STRUGGLING WITH A RECENTLY RECEIVED DIAGNOSIS OF AUTISM SPECTRUM DISORDER (ASD). THEIR DAUGHTER IS 14. WHEN YOUNGER, EMMA PRESENTED AS SLIGHTLY ALOOF, WAS VERY BRIGHT, STRUGGLED WITH HER ATTENTION SPAN, AND WAS SAID BY HER TEACHERS TO BE “VERY CREATIVE.”

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PARENTAL SUPPORT

As I sat and listened to their story, I felt myself starting to track the road of emotions both parents felt over the years. It went from the joy and anxiety of first-time parents to slight concern over things Emma did as a baby to feeling proud that Emma was able to recognize and read words at a very young age. This windy road of ups and downs, challenges, and success with the school system and extended family was real and an everyday part of life. It is so important to know and recognize that a parent’s or caregiver’s road of emotions as they watch their child grow and develop will be filled with ups and downs and that this is extremely typical. However, for a family that receives word of a diagnosis for their child, this road will be filled not only with emotions towards their child but also about themselves. Weaved in among the typical emotional stages families may go through upon receiving a diagnosis (Hedderly & McConachiez, 2003) is a feeling of self-blame. This was a clear theme for this family and many others I have worked with in the past. Although literature on the self-blame of parents with children with various diagnoses is unfortunately scarce and this theme only occasionally emerges through qualitative interviews in some studies (e.g., Huang et al., 2010), it is a valid and frequent emotional response to learning a child meets criteria for a particular diagnosis. In an article by Francis (2012), the author explains that parents of children with developmental disabilities (DD) and mental health disorders often experience what is called “parent-blame” or “stigma of bad parenting.” Acknowledging parents and caregivers may go through this stage of self-perception is so important for clinicians and educators as they start to help the family make sense of a diagnosis and move forward. It has been documented the parent or caregiver starts blaming themselves when their subjective judgment of the cause of a negatively perceived event, such as the child’s disabilities, detaches from objectivity, and the recurring feelings of responsibility, criticism, and failure take over. This cognitive and emotional rollercoaster is something I have observed in many of the families that come through our Center. In the book, The Psychology of Shame, Kaufman (1996) argues, “the essence of the self-blame identity script is the repeated accusation of the self for real or imagined mishaps” (p. 103). Through my clinical experiences, I’ve found it is also possible self-blame develops rather quickly after a stressful event (e.g., parents can blame themselves immediately after hearing a child’s diagnosis). Moses (2010) identified four topics during

her qualitative interview that manifested as parental selfblame: bad parenting, ineffective parental oversight of the child’s condition, hereditary transmission, and negative family environment. Although these topics can be extremely difficult to confront, they are real variables that impact the family unit and each member in different ways. Research, various blogs, and other articles have highlighted the experiences of parents coping with the confirmation of various disabilities for their child in terms of their inadequate knowledge, adaptational difficulties, and burden. As stakeholders in a child’s life, the fields of mental health counseling and education need to focus on family perspective and experiences when working with a child with an educational or clinical diagnosis. Various supportive strategies are required to empower families, which would help alleviate their burden. Moreover, parents’ training to strengthen a child’s learning skills is also warranted. So, where do we start? When educational settings are providing an educational classification for a student, the process of reviewing what the Exceptional Needs Today | Issue 8 | 23

PARENTAL SUPPORT

classification means and providing supports and strategies to families is critical. Oftentimes, schools provide documentation of an identified learning disability yet limit the amount of time that is designated to teach parents about that particular educational classification. Setting time to not only review the results but also educate parents on what the classification can mean for the child would be helpful. This is not to say clinicians in private practice do it any better. Educating parents and caregivers on the classification or diagnosis can alleviate some of that parental stress and self-blame. Part of this psychoeducation should include tips for self-care, talking with extended family members, and (where appropriate) siblings. Parents and caregivers are also encouraged to seek out local support groups. These groups are often run by a clinician or even another parent who is going through a similar situation. One piece of advice I give to families I work with is to look for a support group that is “supportive” and not divisive. Some groups get together to tell horror stories of the school system or fuel parents into creating an adversarial relationship with their schools. The truth is, education is not perfect, and some schools and districts must continue to learn how to provide the best educational settings possible.

this boat together. Working to support families going through these stages of self-blame, guilt, and even implicit stigmas at times needs to be talked about. Parents and caregivers do the best they can. Educators and outside professionals need to check their implicit biases about parents and thoughts like, “They should be doing something more, or different.” That mindset only creates division in a world where there is already enough of that going around. Parental self-blame for a child’s disability is real, and we must address it so we are supporting the mental health needs of the family system, and therefore the child or student, in the best possible way.

Now that we all know that, let’s come together to talk about how to support schools, families, and children. We are all in References: Hedderly, T., Baird, G., & McConachiez, H. (2003). Parental reaction to disability. Current Pediatrics, 13(1), 30-35. doi:10.1054/cupe.2003.0406. Huang, Y. P., Kellett, U. M., & St John, W. (2010). Cerebral palsy: Experiences of mothers a.er learning their child’s diagnosis. Journal of Advanced Nursing, 66(6), 1213-1221. doi: 10.1111/j.1365- 2648.2010.05270. Francis, A. (2012). Stigma in an era of medicalization and anxious parenting: how proximity and culpability shape middle-class parents’ experiences of disgrace. Sociology of Health & Illness, 34(6), 927-942. doi: 10.1111/j.1467-9566.2011.01445. Kaufman, G. (1996). The psychology of shame (2nd ed.). New York, NY: Springer Publishing Company, Inc. Moses, T. (2010). Exploring parents’ self-blame concerning adolescents’ mental disorders. Family Relations: An Interdisciplinary Journal of Applied Family Studies, 59(2), 103-120. doi: 10.1111/j.1741- 3729.2010.00589.x 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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MY WORD

It Took 24 Years and a Global Pandemic to Know My Daughter By Judith Contreni Scott I HAVE NEVER REALLY HAD TO “DEAL” WITH MY OLDEST DAUGHTER FULL-TIME. BORN IN 1996 AND SUBSEQUENTLY DIAGNOSED WITH A RARE CHROMOSOMAL SYNDROME THAT HAS RENDERED HER DEVELOPMENTALLY DISABLED ACROSS THE BOARD, MY POSITION AS HER MOTHER HAS BEEN ONLY ONE COG IN A MASSIVE WHEEL OF SERVICES, PEOPLE, AND HELP. Beginning with numerous surgeries in infancy, Emily was surrounded by multiple doctors who performed miracles to fix her heart, kidneys, and stomach. She was ringed with loving care from nurses as she recuperated. As soon as she was discharged from the hospital, a phalanx of service providers from the state

came into our home on a regular basis to teach me how to soothe Emily and coax her to learn. With this group of early intervention specialists, Emily WAS able to learn; first how to roll over, then to sit, to stand, and eventually (and oh, with what perseverance and determination!) to walk. She was four and a

Exceptional Needs Today | Issue 8 | 25

MY WORD

half years old by the time her motor function equaled that of a typically developing one-year-old. Our lives revolved around therapies and exercises, and there was always a professional to guide me down this path I’d never anticipated. By the time Emily was preschool age, she attended school fulltime. Her school days consisted of the regular (special education) teacher, assisted by a physical therapist, occupational therapist, and speech therapist. Notes home from school to me revealed Emily’s day was literally hands-on from beginning to end, with valiant and optimistic efforts to help our daughter reach her full potential. Emily’s teachers guided us to local resources for respite care and funding from grants to pay for adaptive equipment and technology—most notably her iPad, with which she is able to communicate. Through elementary, middle, and high school, Emily was similarly flanked, like a miniature blond soldier nestled in a battalion of protective troops. Every teacher, aide, and student assistant made sure Emily was welcomed in class, helped her get organized, and dealt with behavior issues when they occurred. Emily was taken to the bathroom, helped with her lunch, and assisted to the bus. A hand was always, ALWAYS there to hold throughout her day. Upon her graduation from high school, Emily was supported on both sides by her two favorite teachers so she might cross the stage to receive her diploma like her peers.

too hard; I was not cut out for this; it wasn’t fair. Without Emily’s platoon as a buffer, I was in no man’s land, adrift and afraid. But more than the uncertainty of my ability to manage the caretaking was the realization that I simply did not know enough about my own daughter—as a grown woman—to perhaps find some joy and fulfillment in these endless days and weeks stretching out in front of us. I felt irrationally jealous of the teachers and aides who would certainly know better than I how to handle this time with grace and light.

As a young adult, Emily attends a day program for the adult disabled population in our county. She is absent from the home for the equivalent of a school day, once again surrounded by staff who help her into the building and guide her through her day. Her life, and thus MY life, has been about the immense and multi-pronged system it takes to support a person with disabilities.

Slowly—oh, so slowly—I began to see this time as less about me and more about what it actually was: an opportunity to know my daughter in a way her circumstances and abilities had not allowed before. I wanted our time together to be MORE than a necessary job. I wanted this time to be meaningful and instructive, possibly even fun. So I harkened back to the lessons I’d been taught over the past years as I watched others successfully chart Emily’s course.

Then—like all of us—our world shut down in 2020. Emily’s day program went into lockdown, and she was home, full time, for the first time ever, with me. Emily did not understand what had happened; why her father was home all day working in the office, and why her siblings were in their rooms all day, logged on to their computers for school. But mostly, Emily did not understand where all her people and activities were. Her only certainty was that her mom would be there from stem to stern every day.

What I soon learned was that these experts had been following Emily’s lead. In their observation of her, minute to minute, they had figured out how best to serve her. I resolved to do the same. I set aside my fear and trepidation and watched Emily for cues. She calms when listening to music and riding in the car; thus, part of our everyday routine became driving all over our county, loudly singing to children’s songs. She loved it, and I loved it, too. Watching the seasons slowly change while my daughter laughed and clapped in the backseat was a simple joy.

This new reality threw me into a temporary fugue state of fear and self-doubt. How could I possibly manage the overwhelming responsibility of navigating the days with Emily, a job that had been managed by countless others over decades? Did I have what it took—patience and knowledge and fortitude—to get through? I thought back to all the school breaks and family vacations, times in which my husband and I negotiated Emily’s needs on our own, and I recalled how onerous those times were to anticipate and how exhausted they left us. Every early Saturday morning, I ranted to my best running friend that this was

Similarly, with all local venues like the bowling alley, the mall carousel, and the library closed, we had to revert to a favorite childhood activity to pass the time: playground swings. It became a daily adventure to pick from one of the many area playgrounds and swing for hours. Emily requested the swing sets of her choice, and we became regulars as community members greeted us, often smiling at Emily’s glee and my off-key singing.

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Emily’s anxiety about her abrupt life change was somewhat mitigated by a lot of reassurance—talking and handholding on

MY WORD

repeat, all day. Part of our routine was “hang out” time, merely sitting on the couch, watching a show, and bantering. Emily would write a remark or a joke on her iPad, and I would reply. We talked about her day and her favorite foods, with music lyrics thrown in for good measure. As time went by, I began to see Emily as my loving sidekick, not my daughter with disabilities whom I needed to manage. I saw her funny personality and appreciated her idiosyncrasies as her unique and lovable self. More than a renewed confidence in my own ability to handle an unexpectedly difficult time, I realized Emily and I were loving each other through this time. My own daughter’s adaptability forced me to adapt as well. One of Emily’s repeated utterances on her iPad is her life goals. She will randomly type, “Emily wants to be a computer programmer,” or “Emily wants to be a doctor!” Naturally, we respond to these statements by telling her that she can be anything she wants to be. Lately, though, these noble life goals have changed in an initially perplexing way. Emily has begun to type, “Emily wants to be a PERSON!” I’ve been giving this statement a lot of thought, and here’s what I think. My daughter knows—somehow, she knows—that beyond her disabilities and all the things she cannot do, beyond the career goals that she might never achieve, she has the same wish we all do. She wants to be seen for the distinct PERSON she is. It took the intensive immersion together dictated by the global pandemic for me to truly see the person Emily is. She took away my fear and uncertainty and replaced them with love and radical acceptance. And although fraught with fear and anxiety, this time—and my own daughter—gave me a gift for which I will always be grateful.

Judith Contreni Scott is a former high school English teacher and writer. She holds degrees from Indiana University (BS) and McDaniel College (MS). She is the author of Out Came the Sun (2008), a memoir chronicling the first ten years of her daughter Emily’s life. Judith is also a special needs advocate, speaking for parent, teacher, and student groups about the family dynamics of disability. She is an avid runner and reader. Judith resides in Ellicott City, Maryland, with her husband Greg and her three children: Emily (25), Lauren (19), and Evan (15).

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Exceptional Needs Today | Issue 8 | 27

EXCEPTIONAL ADVICE FROM

MESHELL

Parent Engagement in Schools Can Support Educational Success By Meshell Baylor, MHS

“AT THE END OF THE DAY, THE MOST OVERWHELMING KEY TO A CHILD’S SUCCESS IS THE POSITIVE INVOLVEMENT OF PARENTS,” STATES JANE D. HULL, GOVERNOR OF ARIZONA (1997 TO 2003). THE ROLE OF A PARENT PLAYS AN IMPACTFUL POSITION ON THE ACHIEVEMENT OF A CHILD. IT IS THE REASON A CHILD CAN CLIMB A MOUNTAIN: THE PARENT IS THERE TO CHEER THEM ON ACADEMICALLY, ATHLETICALLY, AND INDIVIDUALLY.

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PARENTAL SUPPORT

As parents, we are often in the home advocating for our children to achieve success. Even if they are the smallest things, like meeting an Individualized Educational Plan (IEP) goal or learning to write a sentence and turning that sentence into a paragraph, those small accomplishments are a testament to the importance of a parent’s engagement in their child’s educational success. Parent engagement in schools is defined as parents and school staff working together to support and improve the learning, development, and health of children and adolescents. According to the Centers for Disease Control and Prevention (CDC), a research study conducted in 2016 highlighted 89% of children (kindergarten through 12th grade) meet academic success because of the involvement of a parental guardian. As a parent of a special needs child, I used to wonder how I could become involved in the school system to help my child succeed. Parents of special needs children often feel left out in the parent-engagement realm, but the key to involvement is educating the school on how to practice inclusion with parent involvement for all children. Your child’s education is just as important as that of the next child. I remember walking into my first Parent Teacher Organization (PTO) meeting and feeling awkward and hesitant, but I continued to show up. The more I attended the meetings and volunteered, the more engaged the school staff became with wanting to know more about autism and introducing programs to uplift their special education students, such as holding their very own Special Olympics.

tricts have created a program for parents to volunteer without being sanctioned by their employers. Parents can volunteer with a proper background and tuberculosis (TB) clearance. Please check your local school district’s parent and community division 3. Donate: If you cannot make it to the meeting, ask your child what their classroom or school needs and make it a field trip to go shopping for the school supplies or goodies. Schools will always need supplies, classroom goodies, and even jackets during the winter season. There is nothing more special than seeing your child walk into Sam’s Club or Costco telling you what supplies their class and school need. Doing these special things gives them insight into how amazing a parent you are and how they can contribute. 4. Create a program: Parent involvement is a strong form of inclusion. If you are a parent of a child with a disability, bring awareness to the table. Teach the schools and staff about celebrating Autism Acceptance Month or World Down Syndrome Day. Your voice matters and so do your children. Educate schools about various organizations that uplift and celebrate individuals with special needs. That way you have a seat at

The more I as a parent became involved, the better opportunities I found to get to know the special education division and various staff working not only for my child but for others as well. My son, Justin, began to meet one IEP goal after another, and we would celebrate it with the school. At times, I remember being honored for my participation by all the children in the classroom. Parent involvement does not revolve around one child, but all children. Knowing a parent is in the classroom or even donating to the school gives the child a feeling of wanting to strive to do their very best. Unfortunately, sometimes some parents cannot make it to volunteer, but here are six key ways to stay involved and be active in your child’s educational success. 1. Join the Parent-Teacher Association (PTA): This organization is centered around the active participation of parents, teachers, and staff in raising awareness about the importance of building relationships with parents and the community. Each school and district should have a PTA or PTO that meets every month to highlight innovative ways to include all students, parents, and staff. 2. Volunteer: Schools encourage parents to volunteer at least once out of the month. In fact, some school disExceptional Needs Today | Issue 8 | 29

PARENTAL SUPPORT

the table, and you are not only practicing parent-engagement skills but advocacy skills as well. 5. Create a phone tree: Communication is the key to parent engagement. Create a parent phone tree with the school to know what new and exciting things are happening, and so in case you missed something, who can you reach out to so as to get back on the wagon of helping. Because of the recent COVID-19 pandemic, schools and organizations are creating phone trees and virtual remote meetings to practice inclusion online. 6. Join Coffee with the Principal: Coffee with the Principal is a new program some schools have implemented. Take your child with you to a meeting in person

or virtually to discuss how you can become involved, whether reading a book to the classroom online or even helping with the school parking system. There is always something a good parent can help the school with achieving. A parent’s role goes beyond the home. It is in the schools, on the playground, in the parking lot, and inside the classroom. Whether you are sitting in a school PTO meeting or in the classroom with a teacher preparing arts and crafts for the class activity of the day, parent involvement—your engagement in helping your child—is an example of great parenting and leadership for your child to see. When you, as a parent, play an active role in your child’s education, I guarantee your child will climb mountains, and success will surely follow behind them.

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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30 | Exceptional Needs Today | Issue 8

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EMOTIONAL HEALTH

Reframing Our Thoughts Around Self-Care When There Are Exceptional Needs

32 | Exceptional Needs Today | Issue 8

EMOTIONAL HEALTH

By Nicole Dauz WE ARE THREE MONTHS INTO THE NEW YEAR, AND I WANT TO REMIND FAMILY CAREGIVERS THAT SELF-CARE ISN’T SOMETHING THAT STARTED IN JANUARY AND SLOWLY ENDED BY FEBRUARY. IN FACT, I’M HERE TO SHARE HOW AND WHY IT’S SO IMPORTANT TO INTRODUCE SELF-CARE TO OUR LIFE AND IMPLEMENT IT IN DAILY ACTIVITIES. SO DON’T WORRY, WE’LL START SLOW, AND WE’LL GO EASY. THE GOOD NEWS IS THAT WE CAN’T GET IT WRONG—HOW REFRESHING IS THAT TO HEAR? My self-care philosophy is short and sweet: • It’s any activity that brings you joy • We all deserve it • We are all unique individuals • There’s no right or wrong way to do self-care • There’s no judgment and no comparison I’ve been a mother for 15 years and a caregiver for 13 years. At this point, I’ve been incorporating self-care activities into my schedule for seven years. In the beginning, I started with going to the gym three times a week. My self-care routine has evolved over the years because I fell in love with feeling better. My daughter has a rare genetic disease, autism, and global development delay. As a parent, I play a lifelong role. Therefore, I have decades of this job ahead of me. That’s why I’m so passionate about caregiver wellbeing. While our circumstances may be unique, our experiences unite us. I always say there are a finite number of emotions, and therefore I have felt the same anger, fear, resentment, worry, and sadness as you. I have cried in the shower; I have cried in the car; and I have cried when I’ve been alone in the house. I see you. I know the challenges. I understand how daunting the uncertainty of the present and the future can feel. Despite all of this, I still choose happiness as my North Star. I want a meaningful life for both my daughter and me. To even allow myself to dream that, think that, and believe that, I need to have at least one ounce of self-worth to recognize I deserve it. That one ounce of self-worth may be a faint voice, but it’s enough to move us towards self-care. We need to give ourselves permission to take personal time. We’re the only ones who can do this. The reason this is so important is that learning to put ourselves first also requires setting new boundaries, changing schedules, and saying “No,” to things to which we used to say “Yes.” Reframing self-care is about looking for moments of joy on a daily basis. This perspective allows more people to believe they can even start this self-care journey. I call it a self-care journey on purpose, as there will be ups and Exceptional Needs Today | Issue 8 | 33

EMOTIONAL HEALTH

downs. There will be good days and bad days. There will be days where you can join many activities that bring you joy, while on other days, your schedule seems to be hijacked by your caregiver duties and other roles in life. We’re so much more than a family caregiver—we could be a parent to another child, partner, friend, adult child, employee, entrepreneur, sibling, etc. Self-care is about honoring ourselves. Loving ourselves. Trusting ourselves. This is the best gift we can give ourselves and all those people around us. Would you like to be more patient? Would you like to feel empowered by your own actions? Would you like to have more energy? Would you like less stress in your life? Would you like to learn how to better manage your emotions? While self-care is not the magic pill to instantly transform your life, it is the road that leads to magical things like patience, positive energy, smiling at yourself in the mirror, and joy. My top three self-care tips are: 1. Breathing: Focusing on our breath and being intentional with it disrupts our thought patterns, helps calm our nervous system, and lowers our heart rate. I use box breathing to guide me—this is when you breathe in for four seconds, hold for four seconds, breathe out for four seconds, hold for four seconds, and then repeat five more times. The beauty with box breathing is that we can increase the count number to five, then six, etc., and repeat it as many times as necessary to calm ourselves. 2. Hugging: Being intentional with our hugs allows us to hold hugs longer—try hugging the person for whom you’re caring for eight seconds. Research shows that hugging calms our nervous system and lowers our heart rate. 3. Mantras: A quick and easy phrase I can repeat in my head when I feel myself about to react in a way that’s not favorable. My go-to mantras are, “It’s not her fault,” and “I love you.” We can carry these self-care tips with us at all times and use them when needed. I sometimes combine all three of these tips when my daughter is distraught. I’ll hug her and prompt her to breathe, and then we take long breaths together. If she’s really upset, I’ll repeat the mantras silently in my head.

Start with where you’re at and what you can manage. Most importantly, trust yourself. You know deep down what you need. Your heart always knows. Learn to love yourself with such conviction that you can look back at those times of darkness and sadness and be filled with pride on this amazing journey you have taken. As we can never truly appreciate the light if we’ve never experienced the darkness. This is your life, and you deserve to have it be a meaningful one.

Nicole Dauz is a caregiver coach and self-care advocate who chooses happiness despite her circumstances. Experience is her teacher as the mother of a neurotypical son and an autistic daughter with a rare genetic disease. Her mission is to change the story around caregiving and celebrate the journey. She honors the role of the caregiver by helping them recognize their worth and their true gifts. Nicole’s clients come to her because they feel stressed to the max. She provides them the tools and strategies needed to shift them from feeling stressed and overwhelmed to regaining control of their lives and feeling gratitude and joy regularly.

34 | Exceptional Needs Today | Issue 8

EXCEPTIONAL BOOKS

Expect a Miracle: Understanding and Living With Autism By David Petrovic and Sandy Petrovic Are you seeking insight in honor of Autism Acceptance Month? Choose Expect a Miracle to uniquely learn about the realities and potentials of autistic individuals. Actually—beyond autism—Expect a Miracle is also helpful for persons with other diagnoses and differences. For the challenges addressed within are also common in varying degrees outside of autism; the ideas and inspiration are universally applicable, even for neurotypicals This two-time award-winning book* enables readers to experience, understand, improve, and embrace life with autism, whether personally or professionally.

Written from the separate perspectives of an autistic young adult and his mother, this inspiring book enables an intricate understanding of life with autism. David progressively writes more each chapter until the last is mostly from him, revealing impactful thoughts, feelings, and growth. The book uniquely chronicles the challenges and victories of each developmental stage from toddlerhood through young adulthood and includes topics such as bullying, sensory challenges, transitioning, college preparation and success, and acclimation to employment. Inspiring hope and practical ideas, this book would be valuable to those with Autism Spectrum Disorder (ASD)/Asperger’s syndrome, their parents and loved ones, and professionals who work with autistic individuals in any way. It would also benefit employers, co-workers, and anyone interested in autism. Especially helpful for parents of newly diagnosed children, this book is also a required read in select college courses, enlightening the professionals of tomorrow. Experience life on the spectrum and learn why this book is titled “Expect a Miracle”...it’s not what you might think! *Expect a Miracle received a GOLD award from the prestigious Mom’s Choice Awards® honoring excellence. It also received first place in two categories in the October 2021 Firebird Book Awards: Parenting & Family AND Inspirational/ Motivational.

TO PURCHASE: https://www.amazon.com/dp/B09NRBVGXR

David Petrovic, BA, MAT, is a national speaker (including a TEDx Talk). Though virtually nonverbal until age three and the product of early special education, David graduated cum laude from Notre Dame College in 2015. He is an employed middle school teacher and earned a Master of Arts in Theology in 2020. Sandy Petrovic, RN, BSN, is a tutor/instructional advisor at a college academic support center as well as a public speaker. A co-chair for three years, she now serves on the executive committee of the annual Milestones National Autism Conference. Website: https://aspergermiracles.com/ Facebook: https://www.facebook.com/d.s.petro/

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36 | Exceptional Needs Today | Issue 8

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BEHAVIORAL HEALTH

Ways To Enjoy Spending Time

With Your Extended Family By Faigy Liebermann, AACC, PCAC, ACC ARE YOU DREADING SPENDING TIME WITH YOUR FAMILY THIS YEAR? DO YOU FEEL LIKE YOU ARE RIDING A ROLLER COASTER? AFTER THEY HAVE ALL LEFT, DOES IT TAKE YOU A LONG TIME TO RECOVER, PICK UP THE PIECES, AND PUT YOUR EMOTIONAL SELF BACK TOGETHER? DO YOU FEEL GUILTY FOR FEELING LIKE THIS?

ou are not alone. Do not let anyone tell you that you are making up stories or that you should snap out of this. You are not crazy. Your dread is real. The following information will shed some light on this very common difficulty.

Attention-deficit hyperactivity disorder (ADHD) is often hereditary, meaning it runs in families. If you or your child has ADHD, it is likely other family members have ADHD too, and worse, they may not even know they have it. Behavior is largely brain-based. This means you may be facing difficult behavior from family members, primarily due to unmanaged ADHD. Many people with undiagnosed and diagnosed ADHD have high IQs, and they have learned to cover and manage their ADHD until they reach a crisis point.

38 | Exceptional Needs Today | Issue 8

Your family members may be living with years of compensating behaviors that do not serve them well and that have a major impact on other family members, yourself included! When you get together with family, their ADHD deficits may be more pronounced. It may be more stressful to be in close proximity to these family members. Your stress is real. If that thought is not sobering enough, there is more…

ADHD and comorbid conditions ADHD usually occurs with at least one (often more) comorbid condition. Here are some conditions that commonly occur together with ADHD (The statistics are taken from www.aadd.org).

Comorbid conditions are the norm rather than the exception with ADHD. Over 80% of those diagnosed with ADHD will have

BEHAVIORAL HEALTH

a co-morbid condition. When I work with clients, I look out for the potential of the client having co-morbid conditions. • •

•

• • • •

Up to 50% of those with ADHD will have oppositional defiant disorder (ODD) Sixty percent or more are affected by sleep disorders. It is very common for the circadian rhythm to be out of sync in those with ADHD, which will affect falling asleep, staying asleep, waking up, or a combination of all three Learning disorders like Dyslexia (up to 76%), Maths (up to 30%), Written Expression (65%), Reading Comprehension (52%) Anxiety is very common in those with ADHD; anxiety (42%) and depression (up to 63%) often occur together Obsessive-compulsive disorder (OCD) (up to 33%) is another common anxiety disorder common in those with ADHD Co-occurring alcohol abuse disorders ranging up to 45% and drug abuse or dependence ranging up to 30% Mood disorders are common in those with ADHD (38%); they often manifest through persistent irritability and intense or disproportionate anger Up to 40% of those with ADHD will have Hoarding Disorder Up to 50% of those with ADHD exhibit autistic tendencies, while 80% of those with autism spectrum disorder (ASD) have ADHD Mood disorders, impulse disorders, and any psychiatric disorder are up to 10 times higher in those with ADHD than in the general population

you to aim for two tasks from this category to start with. Every ordinary day, not just when you are under stress, focus on doing as much as you can from the “Vital and necessary” group and at least two activities from the “Vital” group.

Vital and necessary • • • •

Mindfulness Healthy eating Exercise Good sleeping patterns

Vital • • • • • •

Walking in nature Getting organized Getting out of your environment Positive thinking Having fun/laughing Trying out new experiences

It’s so easy at this time of year to drop a healthy routine you’ve been building up, such as exercise or meditation. It may be tempting to stop all those good habits you were working on during the year. However, if you make a conscious effort to keep up your self-care routine, you will have far more emotional energy to deal with potential difficulties, and you will have a much more enjoyable time with your family. There is an added benefit; you will bounce back to yourself far quicker when your family has all gone home.

I have seen patterns of certain conditions being more common in ADHD families as well. Sometimes these conditions just occur as traits.

I recently renovated part of my home. I used to walk every morning in my local woods. Three weeks into the renovating work, I stopped my walks. It was too difficult. The builders arrived very early every morning, around the time I left my house, and I didn’t have the emotional energy to maneuver around this. Reflecting on the last few months, I now understand why I started to get so stressed and why I found it difficult in so many areas. Yes, the builders were knocking down walls in my home, and there was a lot of noise and stress. However, I can clearly see my positive mental state started to fall by the wayside when I stopped my daily walks.

Utilize self-care—absolutely no excuses

Be sure to prioritize!

If you have ADHD, you may likely focus more on others than on yourself. You may have difficulty attending to boundaries. This may lead to overwork, stress, overwhelm, and illness.

Are you trying too hard to please your family? Do you get worn out by trying too hard and spreading yourself too thin? If you have ADHD, you may find it very difficult to focus on one idea. You may tend to focus on the many different things around you. This leads to overachieving and burnout.

• •

There are two categories of self-care. The first one is “Vital and Necessary.” These are the non-negotiable rules of self-care that must be done every day. The second group is the “Vital” category. The activities in this category are just as important, and you need to focus on these every day. However, initially, you may feel a lot of pressure around this, so I would advise

Decide ahead of time what you define as a successful family gathering. Is it the stress of creating an elaborate menu, or is it the wonderful memories you will make with your loved ones? Decide what is important to you and stick to it no matter what.

Exceptional Needs Today | Issue 8 | 39

BEHAVIORAL HEALTH

How can you create lifelong family memories? You don’t need to spend lots of time and effort doing it. Your family members are gathering because they want to spend time with you. The food is a bonus. They want YOU! Make sure you carry through with your self-care routine. You will be more energized and have more focus for your family. When I host my extended family for Passover or any other Jewish Festival, I do my best to provide for them what they need and want. However, my priority during this time is to look after MYSELF! If I fall apart, no one will pick me up…only myself. There may be some grumblings from family members why the food is so plain (it really isn’t) or why I haven’t made their favorite dish (I made plenty good food), but I know I have used that extra half hour to go for a run or do something to energize myself. In this way, I will be more present for my family and much more pleasant to be around. My family will remember my mood more than my food.

Lower your expectations Are you a perfectionist? It’s a common ADHD trait! Ninety-eight percent of all my work with my clients (and myself) is about learning tools to manage perfectionism. We often run ourselves ragged, trying to achieve the impossible and satisfy everyone. If you’re cooking this festive season, try to simplify your menus. I know you might feel like you are cheating. But ask yourself, who are you trying to impress with your elaborate preparations? Running yourself ragged won’t help and will just stress you out further! Psychologists point out we need to replace striving for perfection with striving for excellence, or as I call it: being good enough. Lower your standards and make your life easier. Decision-making and prioritizing difficulties often occur together. If you find decision-making difficult, you may be over-complicating your life.

When I get stressed, I pause and ask myself the following questions: “What am I overcomplicating here? How can I simplify so I can decide quickly and easily?”

Expect mishaps to happen Let’s face it, you can spend so much time and effort planning for your Christmas event, and just when you have everything perfect, things start to go wrong. Flexibility is one of the most critical executive function skills you can acquire. According to Dr. Russell Barkley, one strength many people with ADHD have is flexible thinking—the ability to think differently about other, often creative outcomes to your current problems. Remember, you don’t have to get it right all the time. Expect to make mistakes, expect problems to arise. When they do, find a way to be more flexible and develop alternative solutions. Or adapt yourself to your current situation! Don’t expect to achieve perfection. Rather, focus on getting things to a good enough level. When you are mentally prepared for mishaps, you will be able to handle them better and overcome them, moving on swiftly. Can you find the humor in the mishaps that are bound to happen? Can you find humor in the challenging behavior of family members? Through laughter, you create learning moments for your loved ones. You can only laugh about them when you have filled up your emotional reserves with adequate self-care. Remember the following quote from Carol Burnett: “Humor is tragedy plus time.” My children’s best memories are those where we have looked at the funny side of life’s mishaps. The mishap is not so vivid in their memory. Rather, it’s the positive attitude we had that stands out far more in their minds. This is a most important teaching tool for life. It takes a lot of work—I am still working daily, often hourly, on this one. Little by little, with each seemingly small action, you are moving forwards towards your goal. So, go ahead and arm yourself with these tools and trust that you can make the best of your situation.

I am Faigy Liebermann, AACC, PCAC, ACC, a pioneer, trailblazer, and a visionary disrupter. I bravely challenge current misconceptions around attention deficit hyperactivity disorder (ADHD) and ADHD management. I am an ADHD coach and a professional trainer. Through my daily struggles and training, I have created rock-solid tools, guiding my clients to live successful lives. As a mother to five children and having struggled with ADHD myself, I have a unique understanding of the challenges and strengths of ADHD. I am proof to women worldwide that they can live a successful life with ADHD. In the last five years, I have done more to educate and raise ADHD awareness in the UK than any other coach. I have authored three books about ADHD, one of which is a book series for ADHD women titled Banish Your Overwhelm. There are currently two more books in the pipeline. I founded my coaching practice, Focus with Faigy, in 2015. As the first ADHD coach to achieve PAAC certification on the PCAC level in the UK, I am setting the gold standard in ADHD coaching in the UK. I am a staunch advocate for ADHD women in the UK and worldwide, providing my clients with rock-solid, proven ADHD skills to unlock their potential. Websites: https://linktr.ee/Focuswithfaigy, https://linktr.ee/organisepro

40 | Exceptional Needs Today | Issue 8

EXCEPTIONAL EDUCATION

Bringing Behavior Intervention Plans Into the 21st Century

By Connie Persike, MS, CCC/SLP “When a flower doesn’t bloom, you fix the environment in which it grows, not the flower.”

cause I am not broken. Support me. I can make my contribution to the community in my way.”

This quote from Alex Den Heijer is a perfect summation of what a behavior intervention plan (BIP) should convey. As adults supporting children in schools today, we need to keep this quote at the forefront of our minds. Every one of our students can flourish, but only when they are provided with adequate support and an environment tailored to meet the needs of all individuals.

But, as a community of stakeholders, we must step back and ask: Is this the message our traditional BIPs send to staff, families, and students? In order to answer this question, we need to first think about what a traditional behavior intervention plan is. We also must address updates needed to bring these support plans into our evolved understanding of the field and align them with what we know about the field today, not what the originators of the field knew when they were writing these plans. By doing so, practical ideas will evolve that will help us meet the needs of our students in schools today.

Our job is not to fix students; it is to support them and provide safe environments where they will be able to learn and thrive. As Kunc and Van der Klift (1995) shared, “Do not try to fix me be-

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EXCEPTIONAL EDUCATION

Because what we are currently doing isn’t working. While there was an overall two percent decrease in the use of exclusionary discipline practices in U.S. public schools from 2015-16 to 2017-18, three types of discipline practices actually increased: • • •

School-related arrests Expulsions with educational services provided Referrals to law enforcement

In addition, 2,822 preschoolers received one or more out-ofschool suspensions, and a total of 11,205,797 school days were missed by K-12 students due to out-of-school suspensions (Office for Civil Rights, U.S. Education Department, 2021). The time is overdue to implement needed changes in how we address discipline and behaviors in our schools.

The traditional behavior intervention plan The BIP was included in the 1997 and 2004 reauthorization of the Individuals with Disabilities Education Act. It requires school personnel to develop and implement BIPs for students in special education who exhibit behaviors that interfere with learning (U.S. Department of Education, n.d.). The traditional components of a BIP include a hypothesis for why the behavior is occurring, based on a functional behavioral assessment, and identified replacement behaviors that will be addressed within the BIP (Dunlap et al., 2010). This is all based on the behaviorist belief that a child exhibits a behavior in order to achieve a function of seeking attention, receiving tangible items or activities, avoiding or escaping tasks, or receiving sensory reinforcement (Dixon et al., 2012). When staff identifies a replacement behavior to be taught, they should ensure it achieves the same function as the behavior did for the student (Dunlap et al., 2010). Behaviors within a traditional BIP should be addressed using the following: • • •

•

Prevention strategies—what modifications and supports can be made to prevent the behaviors from occurring? Teaching strategies—what replacement behaviors can be taught to ensure the student receives the same outcome as the behavior of concern? Reinforcement strategies—how can the alternative behavior be reinforced and the behavior of concern no longer be reinforced (i.e., what consequences will be used)? Crisis planning—what will occur when the student becomes a danger to themselves or others (Dunlap et al., 2010)?

Updates are needed to align behavior intervention plans with what we know today Let’s revisit the question: what message does the traditional BIP send to our staff, families, and students? 42 | Exceptional Needs Today | Issue 8

It sends three messages: 1.

Students are using behavior to attain or escape something

The behavior is working for students, which indirectly sends the message that students are using behavior to manipulate the situation and/or those around them

Rewards and consequences will change behavior over time

But…haven’t we learned so much about the deeper whys to behavior? We now know more about how the brain works, neuroscience, and our autonomic nervous system. Our field has come to understand that behaviors can be a bottom-up response to a perceived threat. Our brain is constantly scanning the environment for cues of safety and of danger; this response is a subconscious one. It is an autonomic response that keeps us safe by activating the fight/flight/freeze system (Delahooke, 2019). We have learned rewards and consequences do not provide long-term behavioral change. In fact, offering rewards actually decrease interest and success. It takes understanding the deeper why, teaching, and commitment to help someone change a behavior for the long term, not rewards and consequences (Kohn, 2018). As Mona Delahooke shares, “Fight-or-flight behaviors stem from activation of the sympathetic nervous system; they are a child’s adaptive responses to stress. Using punishment or consequences in response to such behaviors only inflicts additional stress on the child’s nervous system, worsening the behaviors rather than mitigating them.” We now know behaviors are ways our students communicate their distress to us. They are signals to help us get to the root cause of the behavior, so we can provide them with support and strategies, which will decrease their distress. As Kunc and Van der Klift (1995) shared, “Be still & listen. What you define as inappropriate may be my attempt to communicate with you in the only way I can.”

Practical ideas for today—beyond the why I want to leave you with four practical ideas to evolve your BIPs to match our present-day understanding of the field. First, we continue to make prevention strategies the primary focus. Second, we assume positive intent. Third, we become neurodiversity-affirming as we address behaviors. And last, we recognize behaviors are a stress response and use our keen observation skills to clearly describe how our students look as they move through their wave of distress, so we can offer them co-regulation and calming supports as quickly as possible. One thing traditional BIPs got right was its focus on prevention strategies. Patterns of behavior that are repeated strengthen and become autonomic, while patterns of behavior that are

EXCEPTIONAL EDUCATION

When we do the work of finding the why, let’s aim not to think of behaviors as working for the student; rather, let’s assume positive intent. We all do the best we can, given the situation in which we find ourselves. How can we support the student? What accommodations and supports do they need to feel safe in their environment? If students do not feel safe, their feeling brain, the lower regions of the brain responsible for the fight/ flight/freeze system, will take over, and they will not be able to access their thinking brain, the portion of the brain responsible for problem-solving, abstract thinking, communication, and other higher-level thinking skills (Siegel & Bryson, 2016). Felt safety is essential for positive behavior and learning. We need to stop thinking that certain behaviors need to be replaced and realize that perhaps our expectation of “appropriate” behavior needs to be adjusted, so all neurotypes feel welcomed and accepted in our school environments. This is about accepting students for who they are and realizing one neurotype is not “better” than others. As Cas Faulds shares, “Neurodiversity means that we diverge from typical. It doesn’t imply that typical is right or superior, and we’re wrong or inferior. It acknowledges that we diverge.” We must work with students and families to make joint decisions about what skills to address. As Kunc and Van der Klift (1995) shared, “Do not try to change me, you have no right. Help me learn what I want to know.”

interrupted weaken and dissipate (BrainChat, 2021). We can use this knowledge of neuroplasticity when working with students and behaviors that interfere with learning. To do this, we must provide proactive supports to address our student’s stressors and triggers. As we do this, we interrupt patterns of behavior, thus weakening and dissipating their neurological pathways. We learn about which people, places, activities, and sensory input provide cues of safety for our students, and we can then strive to increase access to those. We also assess our students’ strengths and interests, so we can use that information to provide ample opportunities to embed interests and maximize their strengths to help achieve growth and increase calmness and happiness. By doing so, we are providing patterns of behavior that are repeated, thus building, developing, and strengthening neurological pathways to calm.

Keeping in mind what we know about bottom-up behavior, we can realize behaviors are a stress response as students move from safe and secure to adaptive protection through action. When acknowledging behaviors as signs of distress, we offer calming supports and co-regulation as soon as dysregulation begins (Persike, 2021). Our crisis prevention can become a response support plan as we use our calm and relationship with students to de-escalate and soothe our students through their wave of distress, realizing this is a connected experience—what we do, how we look, and how we feel will impact our students. What our students do, how they look, and how they feel will impact us (Persike, 2022). Kunc and Van der Klift (1995) summarized this so well, “Be with me. And when we struggle with each other, let that give rise to self-reflection.” We have work to do. When we dig deeper to find the whys behind student behavior, we gain an increased understanding of our student’s needs. This increased understanding helps us move beyond the why to adequate supports. It’s only then we are able to provide intervention plans that are individualized to the student and reflective of their needs within their school environment (Armstrong, 2021). Let’s update the tools we use so often in schools to do right by our learners of today. And as we do so, it’s essential we remember the quote by Kunc and Van der Klift (1995), “Do not work on me. Work with me.”

Exceptional Needs Today | Issue 8 | 43

EXCEPTIONAL EDUCATION

References: Armstrong, D. (2021). Addressing the wicked problem of behaviour in schools. International Journal of Inclusive Education, 25(8), 976-992, DOI: 10.1080/13603116.2019.1597183 BrainChat. (2021). Neuroplasticity. [Infographic]. Delahooke, M. (2019). Beyond behaviors: Using brain science and compassion to understand and solve children’s behavioral challenges. PESI Publishing & Media. Dixon, D. R., Vogel, T., & Tarbox, J. (2012). A brief history of functional analysis and applied Behavior. In J. L. Matson (Ed.). Functional Assessment for Challenging Behaviors. Autism and Child Psychopathology Series. Springer. Dunlap, G., Iovannone, R., Kincaid, D., Wilson, K., Christiansen, K., Strain, P., English, C., & Sugai, G. (2010). Prevent-teach-reinforce: The schoolbased model of individualized positive behavior support. Brookes Publishing. Kohn, A. (2018). Rewards are still bad news 25 years later. New York Times. https://www.alfiekohn.org/article/rewards-25-years-later/ Kunc, N., & Van der Klift, E. (1995). A Credo For Support. https://web.partnership.vcu.edu/DSP_orientation/downloadables/CredoforSupport.pdf Office for Civil Rights, U.S. Department of Education, Civil Rights Data Collection, https://www2.ed.gov/about/offices/list/ocr/data.html (last modified May 7, 2021). Siegel, D., & Bryson, T. (2016). No-drama discipline: The whole-brain way to calm the chaos and nurture your child’s developing mind. PESI Publishing & Media. Persike, C. (2021, November 20). Beyond behaviorism: A new lens for assessing behavior. Alliance Against Seclusion and Restraint. https:// endseclusion.org/2021/11/20/beyond-behaviorism-a-new-lens-for-assessing-behavior/ Persike, C. (2022, January 1). Bringing functional behavioral assessment into the 21st century. Exceptional Needs Today (7). U.S. Department of Education. (n.d.). https://sites.ed.gov/idea/

Connie Persike, MS, CCC/SLP, is a highly experienced speech-language pathologist and educational consultant. As founder of Supportable Solutions™️, 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: supportablesolutions.com

44 | Exceptional Needs Today | Issue 8

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

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Exceptional Needs Today | Issue 8 | 45

Kate Makes it Great! PARENTAL SUPPORT

Understanding and Addressing Overeating When There Are Exceptional Needs By Kate C. Wilde

HAPPY MARCH TO ALL YOU AMAZING PARENTS AND PROFESSIONALS FROM AROUND THE WORLD. IN THIS ISSUE, I AM ADDRESSING POSSIBLE REASONS WHY OUR EXCEPTIONAL LOVED ONES MAY OVEREAT. ALTHOUGH THE QUESTION FEATURED HERE CONCERNS A CHILD ON THE SPECTRUM, I THINK MY ANSWERS ARE RELEVANT FOR ANY SPECIAL NEEDS CHILD OR ADULT, NO MATTER THEIR DIAGNOSIS.

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Hathai from Thailand asks, “My 13-year-old son with autism eats uncontrollably—is this normal? He is gaining so much weight; it’s like he doesn’t know when to stop. What can I do to help him?”

is good for overeaters as well), an online course at the Autism Treatment Center of America (https://autismtreatmentcenter. org/), will give you real practical help, as well as new recipes to try.

Hi Hathai, thanks so much for writing in with your question. During my work with children, teenagers, and adults on the spectrum (who have not been diagnosed with Pica or Prader-Willi syndrome), I have found the two top reasons this may be happening are:

As for the second possible reason, your son may be disconnected from his feeling of being full. Interoception is thought of as the eighth sensory system. It is the ability to feel the inside of your own body, to feel what your body is up to. For example, is your stomach growling and empty or too uncomfortably full? Are you too hot or too cold? Are you thirsty? Is your heart rate beating fast, or is it at a nice resting pace? Our body is sending us messages all the time, letting us know what the current state of our body is. The part of the brain that is responsible for sending these messages is called the insular cortex. Research tells us this can either be overactive or underactive in the autistic community. The exciting news is there is also research that says if we bring attention to our bodies and their messages, we can begin to feel them more.

He could be experiencing something close to an “addiction” to a certain food substance, so much so he is being drawn to it in what can feel and look like an “uncontrollable“ way. He may be disconnected from the feeling of being full, thus overeating simply because he is unaware he is full.

The most important thing to note is neither of these two reasons is his fault, nor are they yours, and both can be helped. I hope the latter point gives you hope, while the first helps you be more compassionate to yourself and your son. When a child overeats, the parent is often blamed for allowing it—but as you most likely have experienced, it is not as simple as that. Often, when our loved ones are overeating, we can scold them as a deterrent to continuing the harmful behavior. Unfortunately, this can have the opposite effect, teaching our children to instead stay away from us and get cleverer at self-serving. Once we realize this behavior is not their fault, we can turn our attention away from only trying to stop its occurrence towards addressing its root causes. Let’s address the first possible reason: your son may have an “addiction” to certain foods. This simply means he may be experiencing a biological intolerance. The two biggest culprits for our loved ones on the spectrum are gluten and casein (wheat and dairy). There is a lot of research and documentation regarding this online. Simply put, your son may have a permeable gut, which means there are tiny holes in the lining of his intestine. The complex proteins in gluten and casein may then cross the blood-brain barrier and induce a morphine-like state in his body, hence the reference to addiction. These food substances can really be like drugs to our children. One of the signs this may be the reason your son is overeating is that you will find he may be limiting his intake exclusively to foods that contain gluten, casein, or both. Other consumables known to create addictions are sugar (in all its forms) and caffeine. If you believe this is the reason, the solution is to remove these foods from his diet. This will change his eating habits and help him not feel the need to overeat. I know this may sound daunting to you, but don’t worry! This path has been trodden by many families. Here are some recourses that will truly help you: Chapter 14 from my book, Autistic Logistics (2nd edition), outlines exactly how you can do this in an organized and lowpressure way, while Picky Eaters (Don’t let the title fool you, this

In the case of your son, it may be that he has an underactive insular cortex. Thus, he is finding it difficult to gauge when he is full. Below are some practical things you can do to bring his attention to the feeling in his stomach that lets him know he is full:

1 Model listening to your stomach

This is easy and fun. Throughout the day, stop, put your hands on your stomach, and say out loud what you are feeling. Do this modeling when your son is in the same room as you, but he does not have to be looking at you. He can be stimming or engaged in another activity. If he is in the same room as you, he will be noticing and taking you in, even when it seems like he is not. • You could say, “Oh, my tummy is feeling empty; I can hear it growling. I can feel that it needs food. I think I am going to eat.” Then go and get something to eat. • After you have eaten a full meal, sit back in your chair, put your hands on your stomach, and say, “Let me check and see if I need more food. I am going to listen to my tummy.” Listen for a few seconds, then say something like: “Yeah, it is definitely full. I can feel there is food in every part of my stomach; no need for more.” And here is the important part—do not get any more food. Do the same before and after snacks too. • At other times of the day, check-in with your stomach to decide if you are hungry or not.

“Body Listening” into your play 2 Incorporate with your child

If your son has a favorite toy or movie character, create stories with the toy or the character where they listen to their body to see if they are hungry or not.

3 Bring his awareness to his own body

At a time when you know he has eaten enough to have a full tummy, gently touch it and say something like: “Oh, this feeling

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in your tummy means it is full. Can you feel it? That means all the space in your tummy is taken up with food. No need to eat any more.”

a visual and verbal explanation of how 4 Offer his stomach works

Get a biology book that has wonderful clear pictures of organs and a great simple explanation of how the stomach works. Show him the pictures and read it to him. It is okay if he is not yet verbal or not fully verbal. Our children and adults on the spectrum understand us even if they have not yet learned to communicate verbally. Just talk to him at his age level, like you would to a typical 13-year-old. •

what it looks like when the stomach fills up. Get a big balloon. Safety pin it to a soft toy or a picture of his favorite character. Get different pictures of food (or pretend toy food items). Pretend the soft toy or the character is munching on them, then put the picture or toy food inside the balloon. Keep doing that until the balloon is full. Hathai, I am excited for you to explore the two options above. Please do write in again and let me know how it went. I am wishing you all a wonderful next few months as you love and challenge your special children and adults. See you in the next issue!

I have parents who have helped their children understand when they need to use the bathroom with a balloon. I think a balloon would also help him visually see

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/

IN SEARCH OF PERSONALIZED EXPERT GUIDANCE? Send us your parenting questions, woes, concerns, and tricky situations with your beautiful, exceptional children. This includes all of 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

HOW CAN YOU HELP? Exceptional Needs Today is funded entirely by advertisers and sponsors. Please go to https://exceptionalneedstoday.com/support/

to help keep the magazine a FREE resource. 48 | Exceptional Needs Today | Issue 8

EXCEPTIONAL BOOKS

Transitioning from a Pediatrician to an Adult Physician By Tammy Flynn Transitioning from a Pediatrician to an Adult Physician will become your essential guide to taking the right action steps as you transition your young adult from their pediatrician to an adult provider. Transitioning into adult healthcare can be overwhelming and stressful, but this eBook lays out the steps and phases of changing over the medical team for you and your young adult. As you continue this lifelong healthcare journey, making sure you have the essential medical providers to support you—not only on the medical side but also in obtaining and continuing support services—is crucial to your success. In this eBook, you will learn: • The ins and outs of transitioning your medical team • When to start the transition process and how to prepare • Effective ways to advocate for providers you believe your young adult deserves • How to be a supportive advocate for your young adult as they begin managing their own healthcare needs

• And more specific tools and resources to make a stressful process simple This eBook is excellent for: • Young adults with complex and chronic medical issues and their parents • Young adults with exceptional needs and their parents/ legal guardians • Young adults with complex or chronic medical issues transitioning to adult healthcare providers

TO PURCHASE: https://www.onairadvocate.com/store/p2/Transitioning_from_a_Pediatrician_to_an_Adult_Physician_-_Ebook.html

Tammy Flynn has been a caregiver and an advocate for more than 23 years for her son, who has unique abilities and complex medical challenges, as well as two of her elderly loved ones. She has also worked in the medical field and with young people and their families within the school system. As a result, she can empathize with what it’s like to be in your shoes. Tammy says her life has many layers, with the family dynamics of being a single parent raising four children and navigating her entrepreneurial journey. Yet, she knows how to serve others with understanding, empathy, and encouragement while giving tools, strategies, and support so you can be the best advocate for yourself and your loved one. She is also the producer and host of the On-Air Advocate. “Let’s brainstorm, get creative, and add knowledge, resources, and education to your toolbox.” Website: www.onairadvocate.com

Exceptional Needs Today | Issue 8 | 49 ADVERTISEMENT

YOU ARE NOT ALONE ON THIS JOURNEY JOI N U S F O R F REE 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 p ti o na l ne e d st o da y . c o m

COMMUNICATION STRATEGIES

How Can I Help

My Stuttering Child? By Dr. Ronald I. Malcolm, EdD APPROXIMATELY ONE PERCENT OF THE ADULT POPULATION STUTTERS. IF YOU LIVE IN THE UNITED STATES, THAT EQUATES TO ALMOST THREE MILLION PEOPLE. WHILE THERE IS NO KNOWN CURE FOR STUTTERING, THERE ARE THERAPIES THAT CAN HELP A CHILD WHO STUTTERS IMPROVE THEIR COMMUNICATION ABILITIES. Here are 10 suggestions for assisting your child with stuttering:

as well as when they are out in the community.

1. Get a proper evaluation

2. Keep high expectations

It is important a speech-language therapist sees your child who stutters and completes a full evaluation. Services to deal with your child’s stuttering will need to be established on their Individualized Education Program (IEP). The speech-language therapist will track their progress weekly. Establishing a good level of rapport with your child’s speech therapist will assist both you and your child who stutters. The speech-language therapist will give you ideas on how to improve your child’s stuttering at home

It is important for you to maintain your high level of expectations for your stuttering child. While your child will need to know you are always there to support them, they also need to know you will continue to encourage and challenge them. Many parents who have a child who stutters will fall into the trap of repeating what their child is attempting to say. Many times, this may create a sense of learned helplessness with their child. Allowing them to make themselves understood

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COMMUNICATION STRATEGIES

cate. Reassure your child that you love them and inform them everyone makes errors or has struggles in life. Just encourage them to try again and do their best.

5. Relax and don’t rush Many children who stutter will become anxious when attempting to be understood and suddenly realize they aren’t. A parent can simply tell their child to relax, take a breath, and not rush their speech skills. These are great coping skills for your child to develop as they mature. It can assist your child when you are not with them, and they need to self-regulate.

6. Teach self-advocacy It is important your child has a name for their communication difficulty. They need to know they “stutter.” Your child who stutters cannot self-advocate if they don’t know what they are self-advocating for. It is also fine to let your child know there have been many people who have dealt with their stuttering effectively with daily practice.

7. Involve your child’s teacher Many classroom teachers will want to assist your child who stutters when they are in their classroom setting. However, some of their good intentions may have the opposite effect on your child. Visiting with your child’s classroom teacher is the first step. Offer them some simple suggestions, such as:

and deal with their stuttering without assuming another person will speak for them is an important first step to coping with their stuttering and regaining their sense of independence.

•

Remind them to give your child additional “wait-time” when attempting to communicate in the classroom

•

Let them know your child will respond to positive praise and reinforcement for practicing their communication skills in front of their peers

•

Don’t overlook your stuttering child because they think it will embarrass them by using their speech skills in the classroom. Many stuttering students will actively engage in the classroom if the classroom expectation is that they will be called upon in class to answer questions, just like the other students in the class do who do not stutter

•

Don’t constantly correct their speech patterns and tell them to slow down every time they attempt to communicate. Just continue to give them ample time to formulate their thoughts and make their needs known

•

Some students who stutter want to self-advocate. They want to address their peers and let them know they have a stutter and don’t like being teased or laughed at. Other students who stutter are not ready to address their stuttering concerns to their peers. The choice is up to the individual student. They need to be asked how they want to handle it. If they are not ready to self-advocate, then give them time to deal with the situation and to decide for themselves when they are ready

•

If the student who stutters experiences a difficult sit-

3. Utilizing real-life situations for practice

A child who stutters needs to practice their speech and language skills daily. Parents can assist by finding “natural” ways for them to practice their speech skills. Encourage your child to order their own food at a fast-food restaurant. Have them identify items in the grocery store as you shop. Encourage them to make weekly phone calls to their grandparents. Teach them songs to sing. These are simple ways to practice their speech skills in a “natural” manner while showing your stuttering child a functional reason for utilizing their communication skills.

4. Don’t overreact Your child who stutters may look directly at you when they are in situations and are being misunderstood by others. It will be important you don’t overreact or react negatively. Your child may sense you are embarrassed and feel ashamed of their stuttering. Don’t expect perfection every time they communi52 | Exceptional Needs Today | Issue 8

COMMUNICATION STRATEGIES

uation in front of their peers, encourage their teacher to appropriately model how to address the concern for the students in the class to observe •

Remind your child’s teacher there may be events that actually contribute to your child’s stutter. Some children stutter more when they are tired, anxious, or even becoming sick

•

Encourage your child’s teacher to continue holding high academic expectations for your child. Just because your child stutters does not mean they have lower reading and math level skills. They need to be graded on their work efforts and not their speech ability

9. Increase their self-confidence Your child who stutters needs to know they are not alone. It is important for them to know there are many children who have struggled with stuttering. One effective way to address this with your child is to let them know of some famous people throughout history that stuttered. This could include letting them know about individuals such as Steve Harvey (Comedian), Mel Tillis (Country Music Star), Greg Louganis (Olympic Diver), Winston Churchill (British Prime Minister), Tiger Woods (Golfer), and even Joe Biden (President of the United States). In addition to introducing your child to a vast array of individuals who stutter, you can also introduce your child to books that deal with stuttering. Such books could include: > Ben Has Something to Say: A Story About Stuttering— Laurie Lears > Stuttering Stan Takes a Stand—Artie Knapp > I Talk Like a River—Jordan Scott > When Oliver Speaks—Kimberly Garvin > Steggie’s Stutter—Jack Hughes

10. Join a national organization or local support group As a parent of a child who stutters, it is essential for you to stay informed. Consider joining a national association, such as the National Stuttering Association. You can even check with your local hospital or doctor’s office about local support groups. This will put you in touch with other families dealing with stuttering children. You can become aware of local and national services, therapies, and even camps available for your child. You can learn from other parents how they take time for selfcare or care for the needs of siblings in the family who do not stutter.

8. Be consistent Some children who stutter will daily challenge their parent’s level of patience. They may not want to use their vocal skills. They may prefer to simply point or gesture to get their daily needs met. As a busy parent, it is easy to fall into this trap. It seems so much easier to just pass them their toy or a food-related item when they simply point. Use positive reinforcement to encourage your child. Offer incentives or rewards for attempting to use their speech skills. Some children who stutter may need positive reinforcement immediately after their speech attempt. Other children may be able to wait for their reinforcement at the end of the week. You could develop a rewards chart and have your child self-monitor their own progress daily. This is a great way to build up your child’s level of self-confidence and a visual way to demonstrate their progress.

Coordinating with your child’s speech-language therapist and teacher while also working on skills daily can improve communication abilities. Your support and encouragement will make all the difference.

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 health-related concerns in both school and community-based settings.

Exceptional Needs Today | Issue 8 | 53

MY WORD

Twice Exceptionality: A Retrospective By Marlo Payne Thurman, PhD THE YEAR I BEGAN MY WORK WITH GIFTED, NEURODIVERSE LEARNERS WAS 1994. I HAD TWO SMALL CHILDREN, AND AS A NEWLY MINTED SCHOOL PSYCHOLOGIST, I NEEDED A JOB. IT SEEMS CLEARLY FATED NOW THAT I WOULD LAND MY FIRST POST-GRADUATE POSITION DOING TESTING AT THE GIFTED DEVELOPMENT CENTER WITH DR. LINDA SILVERMAN AS MY BOSS. FOR THOSE WHO DON’T KNOW LINDA, SHE HAS DEDICATED HER LIFE TO GIFTEDNESS AND PUBLISHED THE FIRST BOOK EVER WRITTEN ON THE TOPIC OF COUNSELING THE GIFTED. DR. SILVERMAN IS, BY ALL RIGHTS, THE GRANDMOTHER FOR BOTH THE FIELDS OF GIFTEDNESS AND TWICE-EXCEPTIONALITY, AND IT DIDN’T TAKE HER LONG TO INSPIRE IN ME A CAREER THAT WOULD BECOME MY LIFE-LONG PASSION AS WELL— UNDERSTANDING AND SERVING TWICE-EXCEPTIONAL CHILDREN. After only six months working with Dr. Silverman, I opened my own practice with the goal of specializing in assessment, advocacy, and social skills training for gifted children who struggled with learning and behavior. With a strong background in autism, this mission wasn’t a stretch. Thanks to Dr. Silverman’s work, I had at least heard the term “twice-exceptional” (2E), but back then, no one really used it much. I remember hearing something about Oprah claiming she believed she had perhaps coined the term. Also, because my chosen population was estimated to be only 15% of gifted children, which constituted only five percent of the general population, I assumed my career path would be slow to grow. But the field of twice-exceptionality had other plans for me. Within a year, I had over 300 clients, and I had firmly established my niche because back then, almost no one in our area was doing much in the way of special education advocacy or support for twice-exceptional learners, and most people still assumed one couldn’t be both gifted and disabled.

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Then in the late 90s, I suffered from a traumatic brain injury (TBI), and public schools saw their first school shooting at Columbine High School. These events combined for me because what most people didn’t know was that the Columbine school shooters had been identified as Gifted and Talented (GT). So, because I needed to pare down my practice and focus on healing from my injuries, I accepted a part-time job to observe and train educators in Jefferson County’s Gifted and Talented programs in Colorado. With money assigned to prevent a second school shooting in the district, I found I could do something easy for me; I could sit and observe classrooms, report my concerns, and teach social skills to kids in the gifted program. This put me in the position to deeply experience what was actually going on in some of the best public-school gifted classrooms in the country. During my time with Jefferson County, I observed hundreds of students in grades K-12 in over 20 schools, and I saw a lot

MY WORD

of things I liked. I also saw that even when specifically identified, the majority of twice-exceptional students still did not have an easy fit in either a GT classroom or a special education classroom. Only three schools I observed specifically served twice-exceptional students in a district-wide GT/2E program, and these schools still lacked what I had begun to see in my own recovery from the twice-exceptionality that came out of a TBI: the necessary supports to properly address the unique attributes that aligned with being deeply twice-exceptional.

to be the most profoundly affected by their condition. But what I saw in these gifted classrooms challenged my beliefs about autism; it tested the construct of intelligence in autism that had been indoctrinated into me throughout my years in college. The kids I saw in these classrooms were not that different from the kids I had worked with in those “low functioning” group homes. While these kids had much easier behaviors, and many were verbally precocious (my previous kids were primarily non-vocal), the other similarities between these two groups were striking.

I also began to see autism (with most kids I saw then labeled with Asperger’s syndrome) in a whole new light. I’d worked in several autism treatment centers during my undergraduate and graduate school years and had been involved in five group homes that were formed when the state of Utah had finally closed its state hospitals. As such, I’d worked with and even lived with kids on the spectrum who were considered

Additionally, and within my own lens as a newly twice-exceptional person, I came to realize that cognitive fatigue, sensory-based difficulties, and the deep, deep emotional frustration that comes from being both gifted and disabled must be at the very heart of any good program serving twice-exceptional children. So, with excellent training from the Jefferson County School’s model, some cutting-edge

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MY WORD

ideas about sensory and emotional aspects of twice-exceptionality, a continuing interest in autism, and funds from a lawsuit in my pocket, I set out to build the perfect school for twice-exceptional learners. In 1999, I opened the Brideun School for Exceptional Children, and one year later, People magazine featured the school as the country’s first private school specializing in meeting the needs of twice-exceptional learners; I was dubbed “The Intelligence Agent” (although the Bridge School in California was still forming at roughly that same time; I was on their first advisory board, and I believe they actually opened first). Brideun opened under a gifted, therapeutic, day school model, serving students in grades one through eight. The school brought together a team of educators trained in giftedness, a full special education team, and a mental health group that worked together to deliver a play-based, project-based, hands-on, interactive curriculum that was delivered within Colorado’s academic standards (for K-12) but outside of standard age and grade-level expectations. Added to this, I set the school up to loosely resemble a sensory gym. The Brideun School, for a time, was as glorious as I had imagined it to be. But the kids we drew to the school were also very exhausting, and many had severe emotional and behavioral needs we hadn’t fully anticipated. Also, while it was a nice boost to my ego, the People Magazine article really hurt us as school districts from across the country referred their most troublesome kids to us, in some cases using financial incentives to urge families to move. So, with too many severe 2E kids with extreme behaviors to serve in too small of a space, along with tuition that was far too low to meet the extreme needs of these students, and an owner and principal that was too young to plan for the effects of a stock market crash, I lost the school. In less than seven years, we had graduated 178 twice-exceptional students who have since made their way forward; today, the youngest of these would now be in their mid-20s, and many have remained lifelong friends. I personally lost everything, including my house, but in looking back, I believe I learned so much that the financial losses may have been worth the price. Brideun taught me the following: twice-exceptionality can take many forms, and no two twice-exceptional kids are alike. The more discrepant one’s scores are, the more likely one is to demonstrate social, emotional, and/or behavioral challenges. Mental health is secondary to physical, social, and cognitive wellness in most 2E kids. Physical wellness comes from movement, hands-on engagement, and active play that is combined with proper nutrition, good sleep, and treatment for illness. Cognitive wellness evolves out of finding one’s passion, pursuing it, and working through challenges with self-respect, true peers, and the desire to reach that passion; social wellness is obtained when belong-

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ing, and meaningful friendship leads to lifelong bonds and a deep sense of belonging; and last, a similarly twice-exceptional friend is a friend for life. Reeling from a bankruptcy, and with a continuing soft spot in my heart for the “Asperger’s syndrome” types of kids from my school, I switched gears and re-entered the world of autism professionally. With a change that wasn’t my choice, I realized it has always been the stereotype of the autistic savant that had interested me most on a professional level. So, in the years that followed, I spoke at conferences, trained teachers, and consulted on the creation of numerous smallschool settings for kids who were both gifted and on the autism spectrum. I also joined the advisory board for the U.S. Autism Association and eventually created and directed the U.S. College Autism Project. During these same years, I returned to my private practice and conducted about two thousand assessments for twice-exceptional children, including those with autism. Under the No Child Left Behind (NCLB) Act of 2004, the law had changed, and special education definitions required both the “presence of a disability” and evidence of a “significant educational impact.” Thus, before a child could qualify for a special education evaluation and receive services under an IEP, they must first officially fail. But, because all the 2E kids I had ever known had often been able to work extra hard so as to barely scrape by, they no longer qualified, and the call for my work was high. As I look back, the NCLB of 2004 hurt twice-exceptional kids more than any other population because it took the position that despite the severity of their disabilities, until these kids actually failed, they could only receive “accommodations” under Section 504 rather than actual services or interventions by individuals trained in special education. I think it was also in these years I realized the kids I was now seeing in my practice were quite different from most 2E kids I had seen in the mid-90s. Like the kids who landed at my school, not only were these kids not receiving appropriate services in school, but they were much more complex and severe in their learning and mental health conditions. It seemed that as awareness for giftedness had increased and the special education laws had tightened, the extreme 2E kids were largely left out. For many, physical illness, severe mental health disorders, and either shut-down or acting out accompanied their twice-exceptionality. What will surprise many new parents and educators is that before 2004, children qualified for special education based purely on a discrepancy model. What this meant is that even with average academic performance scores, gifted kids could qualify for special education because their IQ was much higher than their achievement. Within those early years for education in twice-exceptionality, I believe that while the term was a relatively new concept, those days were in

MY WORD

many ways better for twice-exceptional kids, because back then, the special education teams, who fully understood a wide variety of learning disabilities, could at least stretch their training to include those who were gifted. Additionally, few of my clients in those early days were served under the Section 504 Plan, which, by the way, has no funding tied to it, and even though only a few states had advocates like me (Colorado being ahead of its time), 2E kids were more routinely picked up in special education under other labels. In fact, simply asking for a special education evaluation was enough to get a child evaluated. By 2005, and with one foot in twice-exceptionality and the other in autism, I had begun referring some of my twice-exceptional kids for some of the same bio-medical tests I had been recommending for my clients with autism. Astoundingly, many were coming up with the same medical markers as those with autism. Namely, the 2E kids in my practice, like the kids I saw diagnosed with autism, were nutritionally deficient, had poor absorption rates for essential vitamins and minerals, had numerous gut-health issues, were not detoxifying toxins properly, and had poor cellular respiration. Similarly, they were mentally and physically exhausted, and many had resorted to living in a state of adrenal activation until their adrenal systems had failed them, and they were forced to shut down entirely. For some, this had resulted in cutting behaviors, suicidal ideation, social withdrawal, and even new threats to copycat the Columbine school shootings. But as was also true in autism, I found that treating them in a triage type fashion, with health and wellness as a first priority and school wellness as a second or even third one made a positive difference in helping them recover, survive school, and become healthy and functioning adults. To do this, I discovered many 2E students, autistic or not, must re-think school altogether to find a way to live within a wellness-first model. Then, with passions and interests in the driver’s seat, I learned that success in school and life could be accomplished as long as teaching “grit” and “determination” are not overlooked. My next career move, and the final piece to shaping my insight, resulted from another accident. In 2011, I suffered from a seizure while driving and was in a car accident that left me with a broken neck and partially severed spinal cord. After several months in a hospital and a year plus in rehabilitation, I decided I wanted to officially get a PhD in Special Education to accompany my degree in School Psychology, but this time, I had a goal: to deeply study, within the framework of a doctoral dissertation, the attributes of autism in those who are gifted. To do this, I undertook a year-long research project with gifted adults diagnosed to be on the spectrum of autism for their perceptions about cognition, sensory processing, and learning as they looked back across their own childhoods. As was true for all the major turns in my

life, this left me with some remarkable new insights, which I published in my book, Autism is the Future. From there, and with a focus on opening up new discussions about neuro-diversity for all who are twice-exceptional, I recruited my dear friend, Jennifer Grace, and together we took over the US Autism Association, where I am now the President. Today I see advocates, experts, and even schools popping up all over the country for autistic and twice-exceptional children. Based on the work of Susan Baum and others, we now have formal definitions and language we hear and use in the field of twice-exceptionality every day. As such, few educators still try to argue that giftedness and disability exist only in isolation, although recent debates have re-emerged about the presence of giftedness and autism, with some in the field of giftedness stating these are mutually exclusive. But in spite of those who are still in the dark, I think we are finally beginning to understand the wide range of asynchrony in the gifted. In my opinion, our 2E kids today are complicated and more harshly affected by their twice-exceptionality, and their mental health conditions are more severe. Served primarily under Section 504, these kids are not getting what they need in school. Today’s 2E kids are exhausted, physically sick, and becoming alarmingly disenfranchised. For me, the outlook isn’t particularly a positive one. Social skills and behavior supports for 2E kids continue to be hard because these kids think, reason, and problem solve in such different ways than their peers that they simply don’t fit in, and they don’t find each other. All gifted children take in more cognitive, sensory, and social information than their peers, but for twice-exceptional kids, because they need that energy for compensation, their energy system runs short; this is occurring at the same time, increasing pressures on all kids are causing them to break. Furthermore, sensory processing remains a difficult consumer because filtering is, as of yet, immature, often resulting in overload; yet, sensory demands in our society continue to increase incrementally every year. This is combined with more screen time, fewer physical outlets for activity, and an increasingly unhealthy planet. Over time, it simply isn’t sustainable. I do have hope, however. My faith in a better future for twice-exceptional children lives in the belief that every one of the kids I have known is now either a twice-exceptional adult or soon-to-be adult. Within that, it is my belief each of these individuals who were properly served by myself and others years ago has the potential to reshape the world in a way that works better for them, their children, and the generations of twice-exceptional people to come. In fact, I place my faith in the survival of our very species within the hands of those who are the most neurodiverse because, in my opinion, the challenges of the world can only be met by those who think differently.

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MY WORD

Dr. Marlo Payne Thurman, US Autism Association President and Chairwoman, began her career as a public-school school psychologist. Early on, she also worked in various mental health centers, group homes, private therapeutic hospitals and day schools, and a behavior treatment center for children with autism. This experience led her into the field of autism, where she developed a special interest in meeting the unique needs of those individuals who were asynchronously developed into the realms of high functioning autism and Asperger’s syndrome. From there, she expanded her work to address the broad needs of all gifted and twice-exceptional learners, including those diagnosed on the spectrum. In 1994, Marlo opened her private practice to provide assessments, advocacy, special education consultation, sensory and behavior support, and socio-emotional coaching to meet the needs of a growing population of gifted, twice-exceptional, and learners with autism. Then in 1999, Marlo expanded her learning and teaching models to own and direct the Brideun School for Exceptional Children, which was a play-based, therapeutic day school serving over 150 children grades 1-8 identified as “twice-exceptional.” Marlo later created 2E Consulting Services to expand her testing services and train and support individuals and programs working with a wide range of asynchronous and neuro-diverse learners. Holding doctoral-level degrees in School Psychology and Special Education, Dr. Thurman currently sits on numerous advisory boards and is the President and Chairwoman of the US Autism Association. Marlo regularly speaks and trains teachers and mental health practitioners and is an adjunct faculty member at the University of Northern Colorado, where she teaches pre-service and continuing educators in the graduate school’s Autism Certification Program. Marlo has been recognized for her work by People Magazine, The Special Educator, ADDitude Magazine, the New York Times, and National Public Radio. In addition, Marlo writes regularly for Psychology Today and most recently completed a landmark study proposing an alternative SensoryCognitive Difference Theory in the field of high functioning autism, based on her extensive discussions and interactions with diagnosed adults. This research is the foundation for Dr. Thurman’s newest book: Autism is the Future. Website: https://www.usautism.org

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THERAPIES AND TREATMENTS

Nature Notes

Sensational Sensory Outside Adventures— Part Two By Amy Wagenfeld, PhD, OTR/L, SCEM, EDAC, FAOTA

IN MY MOST RECENT COLUMN PUBLISHED IN ISSUE 7, WE LINKED THE FIVE BASIC SENSES TO A FEW NATURE-BASED ACTIVITIES, WHICH I HOPE YOU ENJOYED AND BUILT UPON TO INCORPORATE INTO YOUR FAMILY ROUTINE. CONNECTIONS WITH NATURE THROUGH ALL THE SENSORY SYSTEMS CAN BE ENRICHING AND REFRESHING. IN THIS COLUMN, WE WILL TOE DIP INTO SENSORY INTEGRATION AND THEN LOOK AT HOW THE FOUNDATIONAL SENSORY SYSTEMS CAN ALSO BE NOURISHED THROUGH THOUGHTFUL NATURE INTERACTION.

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THERAPIES AND TREATMENTS

The sensory system comprises sensory receptors, neural pathways, and brain structures involved in perceiving sensation (https:// www.growinghandsonkids.com/interoception-8th-sensory-system. html). We have eight sensory systems. As you know, five of the eight sensory systems are typically referred to as the basic senses (hearing, tasting, smelling, touching, and seeing). There are actually three more foundational sensory systems: proprioception, vestibular, and interoception.

Sensory integration is a theory many of you may be familiar with because your child has or is receiving sensory integration-based therapy. It is based in neurobiology and was introduced in the 1970s by the occupational therapist Jean Ayres. A simple explanation of sensory integration is that it is a feedback loop. We take in information from the environment through our various sensory receptors. Then we process the information in our central nervous system, which is made up of the brain and spinal cord. After processing, there is a response. Sensory integration happens 24/7, mostly without us thinking much about it, like touching a hot burner and automatically and quickly removing our hands to avoid being burned. A well-integrated sensory system allows us to go about our daily lives with greater ease. In fact, when our sensory systems are in sync, this important feedback loop is pretty seamless. We are regulated and are better able to manage and control our emotions and behavioral responses. But many children’s sensory systems are not working in sync, and they either crave or avoid sensory stimuli just to help them get through their day. It’s like a half-empty cup—someone who craves sensory input and can’t get enough of it, or an overflowing cup—someone who cannot tolerate very much sensory input. It is truly overwhelming to be out of sync. The sensory systems that are the primary focus of sensory integration are the tactile, proprioceptive, vestibular, and interoceptive systems. Note the tactile system (touching) is often associated with the five basic senses but factors significantly in sensory integration therapy, so we discuss it here as well as in my previous column. • Tactile This system processes touch information from the body. We process tactile input through the skin and then send this information to the brain for processing. Since the skin covers our entire body, it is the largest sensory system. We have touch receptors all over our bodies; hence, we get tactile input through touch, pressure, vibration, and temperature experiences. • Proprioception Proprioceptive receptors are located in our muscles and joints and help us understand

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where our bodies are in space. For example, our proprioceptive system helps us to know how to sit on a chair without falling out/off or to know just the right amount of pressure to apply when holding a paper cup or a more rigid plastic one. We can get proprioceptive input by doing “heavy work” like pushing or pulling from being in tight or small spaces or from deep pressure. Think about how it feels to have a lead apron on when you are getting dental x-rays. Does it feel grounding? This is an example of deep pressure. Many people find proprioceptive input to be calming and regulating. Vestibular The vestibular system is located in the middle ear and is responsible for balance and being oriented in space, to help us understand where our head is in response to gravity. We receive vestibular input through rotary, angular, and lateral movements, like swinging, rocking, and even dancing. Some people find vestibular movement grounding and regulating, and others find it offensive. I am in the offensive camp and could never tolerate carnival rides, boats, spinning, and swinging. Interoception The interoceptive system receptors are located on our internal organs and provide regulatory cues about hunger, thirst, being hot or cold, and waste elimination. With this very brief overview of sensory integration and the foundational sensory systems associated with sensory integration and processing, let’s take the same approach we used in my previous column to look at how each can be experienced through nature-based activities and how one nature activity can nurture the tactile, proprioceptive, vestibular, and interoceptive sensory systems. As before, these activities are merely jumping-off ideas to help you develop the best and most appropriate “nature net” for your child.

THERAPIES AND TREATMENTS

Like last month, below is a graphic that shows how interaction with an object found in nature can provide foundational sensory input. My example is a tree.

Proprioception: give the tree trunk a giant and snuggly tight hug.

Vestibular: place and keep one hand on the tree trunk, and keep it there as you run, walk, or roll around it. Switch directions and repeat.

Tactile: rub your hands and arms along the tree bark.

Interoception: take a rest under the shade of the tree.

Image credit: www.almanac.com

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Interoception—eat the tomatoes if you are hungry. Water the plants and cool off by letting some water dribble onto your hands.

See—identify things such as color variations in leaves, big and little tomatoes.

Vestibular—squat down as low as you can to touch the earth and stretch up to touch the top of the plant. Reach over your head, then to the right. Do the same with the the left of the plant.

Hear—what sounds do the leaves make when the wind blows through the plants?

Smell—rub your fingers over the leaves. What do they smell like?

Proprioception—can you pick the ripe tomatoes without removing the stems?

Taste—what do the ripe tomatoes taste like? Please wash the tomatoes before eating them! Touch—what do the leaves feel like?

Image credit: www.almanac.com

Get outside as much as you and your family are able and enjoy the benefits of being in nature. I will see you next month! 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

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TRAVEL AND RECREATION

Igniting a New Wave

of Accessibility in the Travel Industry By David Flake

LORRAINE WOODWARD AND HER HUSBAND, ROBERT, LIVE A COMFORTABLE LIFE IN RALEIGHDURHAM, N.C. LORRAINE IS AN ENTREPRENEUR AND COMMUNICATIONS PROFESSIONAL, AND ROBERT IS AN IT PROFESSIONAL. THEY HAVE RAISED TWO SONS, ALEX AND NATHAN. LIKE ANY FAMILY, THEY FILLED THEIR DAYS WITH THE NORMAL ROUTINE OF ACTIVITIES, PURSUITS, TRIALS, TRIBULATIONS, TRIUMPHS, AND VICTORIES. BUT A BIG PART MISSING FROM THEIR TYPICAL AMERICAN FAMILY LIFE EXPERIENCE WAS VACATIONS. LORRAINE AND HER TWO SONS LIVE WITH MUSCULAR DYSTROPHY, AND FINDING SUITABLE LODGING ACCOMMODATIONS FOR A FAMILY VACATION WAS ELUSIVE, AT BEST. “We did not travel with the boys growing up. Finding a shortterm rental that could accommodate us was impossible, and even staying in an Americans with Disabilities Act (ADA) accessible hotel room didn’t have the level of accommodations we needed,” Woodward said. “And it was really hard on my husband to have three of us in wheelchairs.”

Lorraine’s “Place of No Worries” So, in 2015, Woodward built a totally accessible beach home in Carolina Beach, N.C. It was to be a place of respite for her

and her family to finally enjoy vacations. The home would have accessible parking, a zero-threshold entry, an elevator, roll-under counters, and a roll-in shower, along with other accessibility accommodations. In the planning phase, it dawned on Woodward that surely other families faced similar difficulties in finding short-term rentals, so they added another accessible floor as a rental unit. The rental unit has an accessible kitchenette, an adjustable hospital bed, and an accessible bathroom with enough space for a gurney and three attendants in the shower. Lorraine’s intuition paid off. Patrons from all over the U.S.A. and Canada rent her Carolina Beach property, dubbed “Lorraine’s Place of No Worries,” months in advance and produce enough income to pay for the beach home. In speaking with her renters, she found a common thread of frustration regarding travel and tourism. There is a very small number of fully accessible short-term rental properties across our nation, which limits travel opportunities for the estimated 61 million citizens with disabilities. This sparked an idea—Woodward

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TRAVEL AND RECREATION

homes in Raleigh, N.C., Asheville, N.C., Knoxville, Tenn., and Conway, Ark., each of which will be featured on the television show. Additionally, Woodward’s team is creating educational pieces and video vignettes to assist short-term rental property owners on what they need to make their own properties accessible. “Americans with disabilities make up about 25% of the population and collectively have a disposable income of more than $21 billion dollars,” said Woodward. “It makes sense to position your property to grab part of that market.”

would share her success story with other property owners. That spark has now ignited a flame.

Starting Becoming rentABLE In January 2021, Woodward assembled a team and started Becoming rentABLE, a television show and social media platform dedicated to advocating for and creating accessible short-term rental properties across the United States. Created with the intent of full equity, inclusion, and access for people with disabilities and their families, Becoming rentABLE aims to bring awareness to the barriers that impede people of varying abilities from enjoying and using a short-term rental property, and resolve those issues for short-term rental property owners. Additionally, Becoming rentABLE intends to educate the general public about what makes an accessible property truly accessible for all. The television show, now in the pilot stage, will take viewers through the renovation, construction, and final evolution of accessible short-term rental properties while highlighting what makes them fully accessible. “We aim to start a new wave of accessibility in the travel and tourism industry by increasing the number of accessible short-term rental properties across the nation,” Woodward said. The beach condo is just one of many accessible properties Woodward has her hands on. She’s also working on modifying

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Becoming rentABLE is also working with a team from Harvard University to create new certification guidelines for accessible properties that go beyond what the ADA laid out in 1990. Once established, Becoming rentABLE will review properties against those guidelines and certify that a rental is, indeed, accessible, giving property owners their seal of approval. In the meantime, Woodward has a team of volunteers currently conducting research to identify truly accessible short-term rental properties and listing those properties on their website, www. becomingrentable.com. Becoming rentABLE is working with national disability organizations, including Easterseals, United Cerebral Palsy, and the Christopher & Dana Reeve Foundation, in order to engage their constituents in its efforts to affect change. “I need more than a standard wheelchair accessible hotel room,” says Woodward, “and nothing more was available in a short-term rental. How can you live your best life if there are no opportunities to do so? And that’s what Becoming rentABLE is about.” This is something Woodward feels resonates with millions of people across the nation. “That’s why I’ve started Becoming rentABLE,” she says. “I intend for this company to be a source of inspiration and a solution to remedy this issue. People deserve to live their best lives, and that includes people with disabilities while traveling.” For more information on Becoming rentABLE, visit www.BecomingrentABLE.com.

TRAVEL AND RECREATION

You can follow them on social media at:

https://www.instagram.com/becomingrentable/?hl=en https://www.facebook.com/becomingrentable/ https://www.pinterest.com/BecomingRentABLE https://www.linkedin.com/in/lorrainebwoodward

David Flake is an HR professional, father, musician, chef, problem solver, aficionado of all things vintage, and a native Arkansan with a degree in psychology and over 30 years’ experience in Human Resources Management specializing in strategic planning, policy development, and employment law. David resides in North Little Rock, AR, where he spends his time among family and friends enjoying the comforts of life as a handsome rock-and-roll drummer. As Becoming rentABLE’s Practicality Guru, he may be reached at david@ becomingrentable.com.

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PARENTAL SUPPORT

Seeing Your Whole Child When There Is a Disability

By Karen Kaplan DO YOU REMEMBER WHEN YOU FIRST RECEIVED YOUR CHILD’S DIAGNOSIS? WHAT DID YOU REALLY HEAR THE NEUROLOGIST SAY? WHAT DID YOU THINK THE DEVELOPMENTAL PEDIATRICIAN MEANT? COULD YOU IMAGINE THE LEARNING DIFFERENCES YOUR CHILD MIGHT HAVE? DID YOU UNDERSTAND THEY WOULD HAVE STRENGTHS—BE MORE LIKE A TYPICAL CHILD THAN DIFFERENT? COULD YOU IMAGINE THE ROLES YOU WOULD NEED TO ASSUME? WERE YOU GIVEN HOPE? Often, when a parent is told their child is different, a variety of feelings can emerge: • • • • •

Anger (Why my child, why my family?) Sadness (This is not fair) Doubting (No, no, they’re okay, they will be okay) Embarrassment (What will others think?) Guilt (What did I do to make this happen?)

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It is important to realize blame does not help, sadness will gradually lessen, acceptance takes time, and embarrassment will take acquiring understanding and sharing your knowledge with others to counteract. It’s time to consider what you can do to help your child reach their highest potential. Know that every child has strengths and interests. Know that every child will have dreams, hopes, and desires.

PARENTAL SUPPORT

See the whole child. See beyond the Down syndrome, autism, or cerebral palsy diagnoses. Don’t focus exclusively on the symptoms such as different eyes, lack of communication skills, or the inability to walk. Do not just see an arm that doesn’t write or a leg that doesn’t run. Do not think they do not understand because they do not use their voice to speak. Do not think they are not wise because they do not talk. See MORE of them, not just what is different. Remember, they are capable but need your teaching, coaching, mentoring, help, and support. So, provide opportunities for your child to learn and grow. Acknowledge (comment) on your child’s communication attempts. When they look at an item or point to something, acknowledge the action. When they take your hand or arm and lead you to what they want, let them know you understand. When they make a sound or try to say a word, listen, and offer a choice. When they write or draw, acknowledge their attempt. It is important to try a variety of strategies to help your child understand language and express communication. Name things for your child over and over again, in the home, in the community, everywhere. Develop their pointing skills and give them choices (do you want this or that?). Say ‘thank you’ for pointing and making a choice. Thank them for taking your hand and showing you what they want. Take them to the market. Ask them to find or point to different items (apples, bananas, cake, chicken, etc.). Get big picture books. Name things in books. Have them point to or look at a certain item you name. Go to the library. Go to bookstores. Have them pick out books. Use pictures (draw with them, use your phone or use a camera). When a child can write or read words, use the written word to communicate with them. Use an assistive device (phone, iPad, computer) that is programmed to speak or show pictures. Sign language is great for some children who do not use their voice, but not if they aren’t able to use their hands well. Have your child make choices (rice, fruit, meat, or cookies?) and solve problems (open a door, close a window, pick out food, turn on water). It is important to have your child follow directions (put it up, down, in, out, next to, on, off, above, and below). It is important for you to help your child to learn quantity (how many?). In the grocery store, let them get five oranges and put them in a bag. Have them count the number of people in the family at dinner or a party. Let them count shirts and pants in their drawers or laundry. Let them put two cups of water in the

rice before boiling. Teach them the numbers on your watch, clock, or phone. Take them to visit different places, so they can see how other people live and what goes on in different businesses, parks, centers, bookstores, or activities. Seeing different people and seeing different places increases their understanding of words used to describe those places, persons, objects, sounds, musical instruments, statues, and transportation types. Point out different kinds of trees, birds, plants, animals, cars, and bikes over and over again. Have them point to what you say. Point out colors of objects, buildings, clothing, foods. Ask them to find the blue bike, red shirt, green tree, blue and green bird, or yellow flower. Point out what someone is doing (eating, drinking, stirring, cutting, painting, walking, running, climbing, laughing, crying, driving, or pouring).

Teach social skills Teach them to greet others (hi, bye) and to take turns. Teach them how to wait—how to play—how to make friends. Teach them the rules of the new environment. Teach them how to say thank you. Take them everywhere (maybe for only small amounts of time in the beginning). Teach them how to play soccer (maybe some special modifications will be needed). Teach them drumming, and then they can join a drumming group. Teach them to dance, and then they can join others to dance. Teach them to ride a bike, and then they can ride a bike with others. Teach them the concept of dirty and clean (hands, face, clothing, floors, etc.).

Build independence Teach them to feed themselves early (small steps, cup, spoon). Teach them to dress themselves early (small steps). Teach them to clean themselves (face, hands, legs, arms). Teach them to help prepare simple snacks or meals. Teach them to choose ripe fruits from the market. Teach them to wash their own clothes. Teach them to sweep, wipe off tables, take the trash out, feed the chickens, gather the eggs. Teach them to shake their heads no or yes. Teach them to point to which part of their body hurts. Teach them to do parts of household jobs and contribute to helping the family.

Special tips Don’t stop talking to your children. Feed them well; they need healthy brains to learn. Make sure they sleep well, so they are not agitated and anxious. If they have seizures, get medical attention (there is medication to stop seizures). If they have motor problems, find a physical therapist or occupational therapist. Find special organizations to provide resources, education, and therapy.

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PARENTAL SUPPORT

Seek out other families with special needs children, form a support group, and share ideas. Make sure siblings understand about their special sibling so they can help. Realize it is hard for siblings too. They may have fears. They may feel left out. Give them special time with you without their sibling. Help them understand. Spend special time with other children in the family. Teach them how to help. They could be embarrassed in front of their friends. Understand; help their friends not be afraid.

Parents • • • • • • • •

Be sure to get enough sleep. You will make better choices Be sure to eat well so you can take care of your children Be sure to make time for friends. Isolation is not helpful Be sure to have time with your spouse in regular community activities. It is important to have a caring community around you Look beyond the disability Discover your child’s likes, interests, and passions Teach them to understand their life and communicate in it Teach them to be as independent as they can be. Let them help

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. She 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 for 20 years 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 Finding Hope for 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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EXCEPTIONAL BOOKS

Simon’s Voice By Meshell Baylor Take an adventure with Simon as he learns to discover who he is and what makes him happy every day. Simon’s Voice is a delightful book about a boy with autism uncovering his identity. “…As a parent, I believe that it is important to be able to identify the many different and wonderful ways a child can communicate their thoughts and feelings. I think this book is amazing because it takes us through the journey of an autistic child who explains that he is not always able to verbally communicate; however, [he] does through in different artistic ways. There aren’t many children’s books that talk about autism; therefore, the book offered an opportunity for me to have a discussion with my daughter….” —Verified Amazon Reviewer

TO PURCHASE: https://www.amazon.com/SIMONS-VOICE-MESHELL BAYLOR/dp/B09K1Z2XGK#:~:text=https%3A//read.amazon. com/kp/embed%3Fasin%3DB09K4FPTVQ%26preview%3Dnewtab%26linkCode%3Dkpe%26ref_%3Dcm_sw_r_kb_ dp_7DCWFBE4AJXV7FBV98GS

FINANCIAL FOCUS

Four Essential Facts About Special Needs Trusts By Ryan F. Platt, MBA, ChFC, ChSNC, CFBS It is not unusual to feel overwhelmed by the complexity of coordinating all the necessary legal, financial, governmental benefits, communication, and tax strategies when forming a Special Needs Trust. Here are some excellent tips to take into consideration: 1. The Trustee (person, people, or organization that is responsible for managing the trust) is not only someone who knows your loved one who has special needs, but the trustee has these responsibilities: a. Manage the assets held in the trust or hire a money manager to do so (An understanding of taxation of Special Needs Trusts is critical) b. Make distributions when necessary. Pay bills as needed. In a Special Needs Trust, caution must be used in paying bills because some bills are not permissible to be paid from a special needs trust with out impacting government benefits c. Complete annual tax return for the trust d. Acts as a fiduciary e. Must have a clear idea of the needs of the beneficiary, today and in the future, so they can manage the assets appropriately based upon the number of years the beneficiary will need the resources 2. Inter Vivos or Testamentary? a. Inter Vivos means your special needs loved one’s trust is active today but does not need to be funded. That design can be preferable for many families because if other family members would like to leave money or gift assets to your special needs loved one in the trust before their parents pass away, this type of trust would allow for this to happen. Inter Vivos can also be used as parents age, and they need help in managing the lifetime support needs of their child b. Testamentary means the trust “lives” inside the will of the parents. In this design, no resources can

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be placed into the trust until both parents die. This can limit the flexibility and the usage of a trust to fully protect your special needs loved one’s benefit qualifications 3. Taxes, taxes, taxes a. Tax brackets are compressed inside of trusts, and this is especially true for a Special Needs Trust. It is critical your special needs loved one is able to use as much of the resources left for them and not lose them to taxation. In order to do this, it is imperative parents understand how to fund their child’s special needs trust so their child’s life is funded properly and the trust does not pay a high rate of taxes 4. The Special Needs Trust needs to be part of a much bigger, multi-generational plan a. Creating a Special Needs Trust is critical for most families in order to protect government benefits, but planning cannot stop there. You need to understand: i. The amount of money that needs to be in the trust to support your child’s lifetime needs

FINANCIAL FOCUS ii. The accounts you are going to use to fund the trust and the tax treatment of each one. This will help parents understand where (in what types of accounts) to save their own money (which many times will be used to eventually fund the Special Needs Trust) iii. If your trustee is a family member, how will you ensure they have the professional support they need to avoid mistakes? iv. You must choose a caregiver or guardian. This is the person who will take care of your special needs child when you are gone b. Communication: You must share your plan and vision. i. Develop a Letter of Intent—This document serves as the instruction manual for your special needs child, including their daily schedule, professionals and important people in their life, medical history, their goals, and your hopes and dreams for their life (including preferred living arrangements) ii. Educate extended family on the necessary planning for your special needs loved one, and provide them the information they need to ensure they do not inadvertently make a mistake that forfeits your child’s ability to qualify for life-supporting government benefits iii. “Team” Meetings—Regularly schedule update meetings with the next Support Team for your special needs child to share any changes in the plan and vision Please know you are not alone when planning for tomorrow. Reach out to a specialized team that can guide you through your multi-generational journey. 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. Securities and investment advisory services offered through qualified registered representatives of 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.

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The Neverending Power of Special Needs Parenting By Melanie K. Milicevic BEING A SPECIAL NEEDS MOM IS A LITTLE LIKE BEING AN FBI AGENT. YOU HAVE TO BECOME THE SMARTEST, MOST DETERMINED PERSON IN THE WORLD TO SOLVE A MYSTERY NO ONE CAN SOLVE, AND YOU CAN NEVER GIVE UP ON SEARCHING FOR ANSWERS. You become your child’s doctor, nurse, speech therapist, occupational therapist, physical therapist, best friend, and every other kind of specialist out there. When I meet special needs mothers, I know I am meeting the strongest people alive. Screw Iron Man. Try raising a child with special needs. Then we can talk about marathons. There are very few jobs that are as demanding as caring for someone who has exceptional physical, neurological, or emotional needs. I don’t have a particularly difficult child to care for, yet their care demands I be very consistent, persistent, and always ahead of the game. There is no “Let’s see how it goes” or spontaneity. It takes meticulous planning and careful construction to pave a road for your child in the world. People don’t always understand why I have to plan so carefully. Yes, it’s partially my obsessive-compulsive disorder (OCD), but really, it’s because I have to have a plan so I can make things happen for my family. I can’t just stop by somewhere for fun. I have to think about my child’s mood, his ability to handle more, and my abilities as well. I am not Iron Man or Superwoman. I’m just a weak, sensitive old

soul trying my damndest to give my child a chance to make it in this broken and flawed world. Many times, doctors or specialists don’t know what to tell you about how to help your child. They don’t know why your child has a rash, or a stomachache, or can’t go to the bathroom. They don’t know why your child is crying or looks off, is flushed in the face, can’t sleep, or can’t sit still. You become the investigator because you need quiet; you need rest, and you need to find a solution so you can function and be what your child needs day after day. It’s a marathon, to say the least, but as you keep running, the wear and tear on your body never ends. It keeps eating away at your muscles, your bones, and your mental and spiritual self. It is the hardest journey I have endured so far in my lifetime. Yet, there is nothing I would rather be doing than helping my child progress. I keep going no matter what, and I will Exceptional Needs Today | Issue 8 | 73

MY WORD

always be working to improve my abilities to advocate for my child. I have to be sharp always—to think and plan, think and plan, think and plan. Every day this takes energy. I can’t have the kind of body I would like or make the kind of meals I would like, or even be the kind of wife I would like because I am thinking, planning, and finding a way to carve a space for my child in this world. My focus is advocacy, support, skill-building, and trying to create a community for my son. This is not easy because other parents look at you like the helicopter parent from hell. Believe me, if I could just sit back, drink coffee or wine, and relax while my kids run wild and free, I would. But I can’t for a number of reasons, and so I have to be more active and involved so I can help make things happen for my wonderful boy. Special needs parenting and mothering, in particular, is a very challenging job. It’s one that takes incredible inner strength and incredible persistence. You can never give up even if you’re ready to do so every day. You have to find a way to wake up. You have to find a way to stay positive and keep smiling at everyone even when you want to pull the covers over your head and never come out. You have to be indestructible and fight hard like a cage fighter even though they’ve been counting a long time, and everyone knows the match is over. Somehow you have to keep getting up, even after the worst blows to your head. Get up, keep trying, find another way, plan your next move. Though it seems impossible, you can make it even though some will look at you with pity and make you feel like you are crazy even for trying. I write about this because even though some of us might make all of this look easy; it isn’t easy. It is incredibly hard. It forces you into dark corners all alone, screaming internally but not making a sound. You want to throw punches at people who are insensitive to your pain and struggle, but instead, you have to smile and listen to them lovingly speak about their children and their successes. You are happy for everyone always, but your internal struggle and your fight for your child take you to places no one ever wants to visit. It’s a dark journey often. You are alone, and you just have to learn to live with it. Even so, I find comfort in small encounters everywhere. This is why getting out of your house is so important. You have to interact with lots of different people because when you do, someone somewhere will say something incredibly kind and lovely and make you feel better even for a short moment. This weekend a woman complimented my children and how beautiful they are together. She told me

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how well they performed dancing folklore on stage and how sweet they were playing together. This simple compliment was all I needed to keep myself above water. When I told her my son had autism, she made a funny face because she couldn’t believe it and her reaction demonstrated that she had never met an autistic child like mine. The way she complimented how well he behaved was, again, a small stroke that gave me the courage to keep breathing. I know when people don’t believe your child has autism, that means he looks more typical. I’m not trying to make him more typical, but I do want him to be able to survive in this place we all live in, so looking somewhat more typical can be helpful. But more than anything, I tell people about his autism because I am educating them about

MY WORD

what autism looks like. Here, it looks like him. Take a look and be in awe of my extraordinary child. I believe in educating everyone about autism because one day I will be gone, but there will be many more autistic children and adults around, and I want each and every one of them to be embraced, loved, and cared for. When I am gone, I want my community to love and support my child so he feels successful in the world. I am thankful I had that short but special chat with a woman I barely know because her kindness helped me make it through some personally difficult moments.

When you see someone with a child with special needs, no matter how challenged they are, give their parent a compliment about their child. Give them something to feed their soul a tiny bit. Ask about their child. Show interest in their needs and challenges. Ask what you can do if you are close to them. Talk directly to that child if they are close to you, even if they are nonverbal. Make eye contact and smile. Those are priceless gifts to our families. Your loving gestures might be the reason a parent keeps fighting another day. There are angels everywhere, and I’m thankful to keep meeting them.

Melanie K. Milicevic is a graduate of UCLA and a former fifth-grade teacher for the Los Angeles Unified School District. She worked mostly with second language learners and collaborated with special needs families to meet the unique needs of her students. She now advocates for her own special needs children and continues to work with schools to help educate them about ways to include children of all abilities in the classroom. Melanie is a passionate writer and hopes to be a voice for special needs families in her community. She lives in San Diego with her husband and two children.

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SAFETY STRATEGIES

Preventing the Maltreatment of Children With Exceptional Needs By Nicole Moehring EVER SINCE MY CHILDREN WERE YOUNG, I PERIODICALLY HAD CONVERSATIONS WITH EACH OF THEM ABOUT BODY SAFETY AND ‘STRANGER DANGER.’ MY CONVERSATIONS WERE DIFFERENT WITH EACH OF THEM BECAUSE MY DAUGHTER, MACI, IS NEUROTYPICAL, AND MY SON, EVAN, HAS FRAGILE X SYNDROME AND AUTISM.

hen your child is diagnosed with a medical condition, you are given all the instructions of what to do, what specialists to see, the necessary tests, and therapies. What isn’t discussed but needs to be is that children with disabilities are three times more likely to be abused than their peers without disabilities, while children with intellectual and mental health disabilities have nearly five times the risk of being sexually abused1.

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Most people think it will never happen to their child. I thought the same thing, but abuse does not discriminate. Abuse doesn’t care what religion, ethnicity, or socioeconomic status an individual has. Raising a child with a disability is already challenging, and abuse makes things so much harder. Our family went through this. We should have had access to support and services. We didn’t. We felt the devastation. We never want anyone else to feel that way.

SAFETY STRATEGIES

In January 2016, my worst nightmare came true. My son disclosed to me someone we knew and trusted had been molesting him. I felt sick to my stomach. His words kept racing through my head. There wasn’t a question in my mind; I knew he was telling the truth. I didn’t know what to do or who to call because no one prepares parents for this moment. And as a society, we treat the subject of sexual abuse as something to be ashamed of or as a “taboo.” This is why it has become an epidemic. I felt we were discriminated against throughout my son’s case. The justice system is set up to protect perpetrators, not victims—especially victims with disabilities. My son’s case was unsubstantiated. My son could still see the perpetrator, according to Child Protective Services (CPS). There was nothing I could do to keep my son out of harm’s way. In June 2017, Evan began having unthinkable meltdowns. Like nothing I had ever seen before. Lasting anywhere from a few minutes to a few hours. It was clear something was wrong, but what? I began logging everything I could to try and determine if there were any patterns in his behaviors. Still, I came up empty. We went from doctor to doctor, desperate for help. One doctor just wanted to medicate him. NO! That wasn’t the answer. All that was going to do was mask whatever the issue was. We needed to peel back the layers and determine the underlying problem so we could identify it and help him.

ganization, to begin making much-needed change for children like Evan. VOC18 is a national organization piloting our groundbreaking programs in Ohio. We are developing preventative education and training for children 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.

General statistics on abuse with a disability

Children with disabilities, in particular, have a higher risk of being abused or neglected. According to the United States Department of Health and Human Services, 11% of all child abuse victims in 2009 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 disabilities2. In addition, abuse is typically more severe and is more likely to occur multiple times.

In June 2018, my world turned upside down for the second time when my daughter, Maci, who was 15 at the time, was sexually assaulted at a graduation party by someone we knew (a different perpetrator than my son’s case). It was then when it became clear why Evan was having these meltdowns, as Maci’s case was progressing. Evan finally disclosed that his perpetrator (the same perpetrator as the first time) was forcing him to undress and pose for nude photos of him. Evan saw him uploading the photos to the computer and printing them. Evan was threatened by the perpetrator, “Don’t tell anyone about this or you and I will be in big trouble.” As a mother suffering through this unbelievable nightmare, I witnessed the differences in the justice system of how my daughter was believed and treated so well, and my son was not. In the end, Maci received justice while Evan did not. Children with disabilities, who have been victims of abuse/assault, need advocates, preventive education, and access to recovery resources. I quickly recognized the distinct differences in recovery, finding support, and receiving justice for neurotypical children vs. children with disabilities. My daughter Maci and I founded Voices of Change 2018 (VOC18), a nonprofit or-

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SAFETY STRATEGIES

The United States Department of Justice reports that as many as one out of three girls and one out of five boys will be sexually abused by the time they’re 18; this rate is even higher among children with disabilities. According to one study, children with disabilities are three times more likely to be abused than their peers without disabilities, while children with intellectual and mental health disabilities have nearly five times the risk of being sexually abused1. Violence against children with disabilities is a global epidemic. This violence persists in part because of the following perceived vulnerabilities: • • • • •

Not realizing the abuse is happening Some victims may be non-verbal The perpetrator is their primary care source Fear of reporting Lack of education about body awareness and persona boundaries • Not knowing how to get help

How can you reduce the risk of abuse for children with disabilities? When a child is diagnosed with a medical condition, parents must be made aware of the relevant statistics of abuse and the vulnerability of their child since they may end up relying heavily on caregivers for assistance. Parents also need to be made aware of the statistics of abuse and the vulnerability of their child since we rely heavily on caregivers for assistance.

1. Knowledge Is Power Educate yourself. Talk to your child’s doctors about abuse.

2. Have frequent, open communication with your child From a young age, at their cognitive level, begin talking about body safety, awareness, and boundaries. It’s important to teach proper names for body parts.

young age never to keep secrets because they can be dangerous and hurtful. Then replace the word “secret” with “surprise” for when you want to talk about positive secrets. For example, instead of saying, “We have a secret, we have to keep this from daddy,” change the wording to, “This is a surprise for daddy!” Switching the term in these situations will allow for more openness in your family and will allow your child to feel comfortable coming directly to you if something would ever happen.

5. Create a circle of five people This circle is meant to be created by you and your child of who your child feels are the people they trust. It’s important your child is included in the decision of who will be in this circle. This circle of individuals will include anyone they can go to if something would ever happen to them. Revisit this circle with your child from time to time in case anything has changed. This also keeps communication with your child open and will allow them to feel comfortable talking to you.

What to do if you think your child has been abused If you think your child is being abused or if your child discloses abuse to you, it’s important to remain calm and not react. Let your child know they are not in trouble, that it was not their fault, and you will get them the help they need. If the abuse just occurred, do not let your child bathe. Take your child to the nearest emergency room and request a Sexual Assault Nurse Examiner (SANE). SANE nurses specialize in forensic exams for abuse cases. Unfortunately, most children do not disclose abuse until a much later time. If you find out your child was abused in the past, contact your local Child Protective Services (CPS). They will complete an “Intake” process with you. If CPS feels there is a case, a social worker will contact you.

3. Limit any opportunity for abuse From the time your child is young, make sure you know their friends and their families. When it comes time for your child to start school, it’s important to be proactive by asking what protocols are currently in place. Let it be known you will be periodically stopping by unannounced. In addition, it’s important to let the school and any caregivers know your family discusses body safety, consent, appropriate and inappropriate touching, and you do not keep secrets.

4. Teach the difference between a “surprise” and a “secret” This can be a difficult concept for children to learn. One method of reducing term confusion is to first teach them from a

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References 1.

Disability Justice. (2022, February 8). Abuse and exploitation of people with developmental disabilities. https://disabilityjustice. org/justice-denied/abuse-and-exploitation/ Smith, N., & Harrell, S. (2013, March). Sexual abuse of children with disabilities: A national snapshot. Center on Victimization and Safety, Vera Institute of Justice.

SAFETY STRATEGIES

Nicole Moehring is the first-time author of Finding Myself—Overcoming Abuse, Heartbreak and Loss Then, Finding True Love and is currently writing her second book, Finding My Voice. She serves on the Ohio Attorney General Committee for Crime Victims with Disabilities and is a volunteer DS-Ambassador for the National Downs Syndrome Society (NDSS). In 2021, Nicole received the Crucial Point Award: an annual award given to people and organizations that delve beyond the surface of sex crimes to focus on overlooked niches of survivorship. She believes in bringing these specific topics to mainstream platforms to increase public awareness and effectively drive social change. Nicole is working with legislators to change current laws and pass new ones to enforce stronger policies and best practices for child abuse reporting and how cases are being processed. Nicole has over 25 years of experience in management in corporate, non-profit, and healthcare environments. For the past 18 years, Nicole has dedicated her time to volunteering for various non-profit and community organizations, including The Polycystic Kidney Foundation (PKD); Fragile X Alliance of Ohio; Trials for Hope, and The Children’s Center of Medina County, to name a few. She resides in Hinckley, Ohio, with her husband, Chris, and her two children. 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-of-change-2018/ Pinterest: https://www.pinterest.com/voicesofchange2018/_created/ Email: info@voicesofchange2018.com

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