Exceptional Needs Today Issue 9

Exceptional Needs Issue 9

T O D AY

THE AUTISM PARENT’S GUIDE TO FRIENDSHIP AND DATING

GIVING KIDS A VOICE:

CHANGING THE FACTORS THAT INHIBIT POSTSECONDARY STUDENTS

PROMOTING SELFADVOCACY

CONQUERING MISCONCEPTIONS Ways to Address Bullying in a Child’s IEP

Courageous Conversations in Education

OS TO ITIVE TO AP ILE PR TIN OA G CH

COULD YOUR CHILD BE LOCKED IN A SCHOOL SECLUSION ROOM?

AP

ADHD COACH REVEALS HER DIAGNOSIS AND JOURNEY

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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?

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Contents

Issue 9 GIVING KIDS A VOICE: PROMOTING EARLY SELF-ADVOCACY AMONG CHILDREN WITH DISABILITIES

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Rose Adams, MS, OTR/L Educate yourself on how to treat children as partners in their learning and the importance of identifying and working with their strengths, interests, and preferred learning styles.

MY CHILD WITH SPECIAL NEEDS BELIEVES THEIR TEACHER DOESN’T LIKE THEM

22

FIVE WAYS TO ADDRESS BULLYING WHEN PREPARING A CHILD’S IEP

08 CHANGING FACTORS THAT INHIBIT AND RESTRICT POSTSECONDARY STUDENTS WITH DISABILITIES Toby Tomlinson Baker, PhD Learn the roadblocks discouraging many individuals from pursuing higher education and how an educator managed her struggles with ADHD to help reduce those obstacles.

25

COULD YOUR CHILD BE LOCKED IN A SECLUSION ROOM AT SCHOOL? Guy Stephens Educate yourself on the history, current use, and dangers of restraint and seclusion in American schools and why you may not know if it is happening to your child.

28

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Chris Abildgaard, EdD, LPC, NCSP, NCC Recognize the necessity of an open discussion when addressing all changes and challenges left in the wake of COVID-19 for all individuals involved in education systems.

38 EXCEPTIONAL ADVICE FROM MESHELL UNDERSTANDING AND MANAGING SENSORY OUTBURST

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Meshell Baylor, MHS Learn what a sensory outburst is and how to manage them in ways that will prove most helpful for someone with sensory difficulties.

In her new book, Sanjukta B. Mukherji, BCBA, LBA, guides caregivers in ways to nurture autistic children using her experience as a behavior analyst and as the mother of an autistic child.

DISPROVING MISCONCEPTIONS ABOUT NONSPEAKING AUTISTICS: WE ARE THE EVIDENCE

SAFETY GOALS WITH NICOLE THE TIME TO CREATE A SAFETY PLAN FOR YOUR CHILD IS NOW Nichole Moehring Learn ways to coordinate a plan for keeping your family safe by encouraging an open dialogue with children, teaching appropriate boundaries, and choosing a small circle of dedicated, trusted adults.

Markeisha Hall, MA, CATP Learn ways to address the dangers of bullying and disability harassment in your child’s Individualized Education Program.

EXCEPTIONAL BOOKS PARENTING AUTISM: NURTURING AND CELEBRATING YOUR UNIQUE CHILD

12

33 COURAGEOUS CONVERSATIONS IN EDUCATION AFTER A PANDEMIC

Dr. Ronald I. Malcolm Discover 10 points of consideration when addressing your child with a disability’s potential student-teacher relationship concerns.

30

Noah Seback Follow along as myths surrounding nonspeaking individuals are debunked by a rising self-advocate and autistic nonspeaker.

42 FINANCIAL FOCUS COVID-19’S IMPACT CONTINUES FOR FAMILIES OF LOVED ONES WITH A DISABILITY Ryan F. Platt, MBA, ChFC, ChSNC, CFBS Discover how the pandemic has limited home health options and ways to reduce government support reliance.

44 CREATING CALM WHEN LIFE BECOMES OVERWHELMING Karen Kaplan Learn top suggestions for helping autistic individuals find inner calm and reduce negativity.

48 PAVING THE WAY TO CONFIDENT PARENTING WHEN THERE ARE SPECIAL NEEDS Andrea Pollack, MSEd Modify your parenting mindset from focusing on impossible goals and worry to one of compassion and exploration by learning from everyday successes.

51 THE PANDEMIC AND TELEHEALTH: THOUGHTS ON THE LAST TWO YEARS Maria Gilmour, PhD, BCBA-D, LBA, Kelly Stafford, MA, BCBA, LBA, and Jessica McArthur, MS, BCBA, LBA Find out what the sudden implantation of telehealth revealed during the pandemic and what therapy might look like going forward.

54 KATE MAKES IT GREAT! CREATING A POSITIVE APPROACH TO TOILETING WHEN THERE ARE SPECIAL NEEDS Kate C. Wilde Discover how changing your family’s mindset around toileting can improve the learning process and experience.

57 EXCEPTIONAL BOOKS PRIESTESS OF THE LOST COLONY In his debut novel, autistic author and illustrator Brandon Pilcher blends magical realism with alternate history to create a well-rounded, high adventure set in ancient Greece.

59 FINDING BALANCE IN A FLUID LIFE WHEN THERE ARE SPECIAL NEEDS Melissa D. Dean, MA, EdS Read on as a special needs mom thoughtfully relates her philosophy of balance through her experiences with Pilates and how those values guide her family decisions.

62 AUTISM DOESN’T END AT 18—NOW WHAT? Sanjukta B. Mukherji, BCBA, LBA An educator and exceptional needs mother generously shares her insight into active and considerate transition planning.

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

68 ADHD COACH REVEALS HER OWN DIAGNOSIS AND JOURNEY Faigy Liebermann, AACC, PCAC, ACC Find out how a recent diagnosis profoundly changed a woman’s life.

72 BACK-TO-SCHOOL SOCIAL SKILLS: WHAT YOU NEED TO KNOW Kirt Manecke Brush up on your in-person skills with this refresher as we transition away from online learning.

75 POSITIVE VOICES LAUREN PEARSON: AUTHOR, ADVOCATE, NEURODIVERSITY ENTHUSIAST Margo Marie McManus: Meet Lauren Pearson, a self-published author and founder of DiverseNeuro, as she finishes her senior year of high school.

78 BACK-TO-SCHOOL ADVICE: NINE THINGS TO REMEMBER Nicole Dauz Prepare for sending your child with exceptional needs back to school by reviewing a mother and caregiver coach’s suggestions for getting on track and keeping things smooth.

82 THE AUTISM PARENT’S GUIDE TO FRIENDSHIP AND DATING IN FIVE STEPS

Jeremy Hamburgh Gain strategies and confidence to coach young adults in making meaningful social connections.

85 OUR EXCEPTIONAL STORY: IT’S NEVER TOO LATE FOR LOVE Mary Tutterow Enjoy a personal account of a family learning to trust in love through the challenges of caring for a daughter with severe seizures.

87 BEHAVIOR ISSUES: A FOUR-STEP PLAN TO DE-STRESSING YOUR HOUSEHOLD Cindy Fisher, EdD Walk through how to conduct a functional behavior assessment to reduce your child’s problematic behaviors in a supportive, compassionate way.

91 NATURE NOTES HIPPOTHERAPY: IT’S WAY MORE THAN RIDING A HORSE Laura Ryan, OTD, OTR/L Discover the numerous benefits of hippotherapy as columnist Amy Wagenfeld welcomes occupational therapist Laura Ryan in sharing her expertise.

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 Social Media: Dione Sabella Graphic Designer: Patrick Gwayi Professional Consultants Chris Abildgaard, EdD, LPC, NCSP, NCC 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 COVER PHOTO CREDIT – Bader Howar Photography

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Exceptional Needs Today | Issue 9 | 5

From the Editor’s Desk To me, there’s nothing more frustrating than when someone forms an opinion based on flawed thinking or misinformation.

Misconceptions can be hurtful—destructive—and have long-lasting effects.

This matter was heavily on my mind as I chatted with self-advocates, activists, caregivers, educators, and medical professionals at the recent Springbrook Behavioral Health’s Converge Autism Summit in Greenville, South Carolina. While there, I had the chance to speak privately with two lead presenters, Pulitzer Prize-winning journalist Ron Suskind, whose best-seller, Life, Animated: A Story of Sidekicks, Heroes, and Autism (later adapted into an award-winning film), and Dr. Temple Grandin, a renowned American Doctor of Animal Science, author, and autism activist. I was drawn to learn their insights.

Suskind said one significant misconception he has observed is the way people tend to judge the abilities and feelings of autistics.

“You know, I think that we have lots of snap judgments that are based on normative behaviors and all sorts of nonverbal cues of how we present ourselves either physically or how our physiognomy is in a response to the mirror of someone else’s physiognomy,” Suskind said. “And I think they miss the fact that many people on the spectrum have deep and powerful emotional lives and as well the abilities—just because they don’t often easily fit into the main,” he added.

The excellent news is that Suskind sees change on the horizon. “I think as more and more prominent people on the spectrum say, ‘I’m on the spectrum, I am proud of it, and here’s why’—whether it’s Greta Thunberg or Elon Musk, any of them—it’s really good for people going, ‘Oh right, someone is on the spectrum—I kind of know what that is now,’” Suskind said.

Temple said that when the American Psychiatric Association (APA) revised the term to autism spectrum disorder (an umbrella term that refers to several related disorders), people overgeneralized autism, leading to misconceptions. Another concern, she pointed out, is when caregivers limit a child’s opportunities based on a diagnosis. Grandin said, “I think the biggest problem is parents get locked into a label, and they can’t imagine their kid can do anything. I was just in a Zoom call with people in California that do a surfing program with autistic kids. These kinds of programs, I think the most valuable thing they do is prove to Mom that their kid can do something,” she said.

Sadly, misconceptions run throughout our lives—whether you’re a parent of a loved one with exceptional needs, an educator, a therapist, or managing your own diagnoses. In an effort to encourage open discussions while providing guidance, we will focus this issue on conquering the misconceptions surrounding exceptional needs while building an improved understanding for the future.

6 | Exceptional Needs Today | Issue 9

First, we begin with our featured cover person, Toby Tomlinson Baker, PhD, an educator diagnosed with attention-deficit/hyperactivity disorder (ADHD) who aims to change the underlying forces that impede young adults.

She works diligently to transform the way people teach and how the world sees students with disabilities. You will want to read Dr. Baker’s piece entitled Changing Factors That Inhibit and Restrict Post-secondary Students With Disabilities as she shares her personal experiences and inspiration.

Are you familiar with the terms “sensory overload” or “sensory outburst?” People of all ages can experience sensory overload, but it’s more common among sensory-sensitive children with multiple diagnoses, such as autism and ADHD. Unfortunately, sensory outbursts can easily be misinterpreted, leading to flawed perceptions. Columnist Meshell Baylor, MHS, has provided us with an insightful piece this month on ways to help identify and manage triggers and struggles in her work entitled Understanding and Managing Sensory Outburst. Be sure to check out her supportive techniques.

We are thrilled to have repeat contributor Noah Seback, a rising self-advocate and autistic nonspeaker, provide an article titled Disproving Misconceptions About Nonspeaking Autistics: We Are the Evidence that debunks some common myths. Seback’s perspective is enormously valuable, as he encourages individuals to open their minds and change an established paradigm.

Can you believe a new school year is right around the corner?

New classrooms, routines, processes, and expectations—so much to consider going forward, especially after the challenges during pandemic closures. Chris Abildgaard, EdD, LPC, NCSP, NCC, has provided an insightful piece on the discussions he says are needed in the wake of the pandemic, from increased mental health and socialization struggles to poor problem-solving and coping skills. In Courageous Conversations in Education After a Pandemic, he examines educational inequities, implicit bias, and how traditional educational frameworks, such as inclusion, may have changed.

Does your neighborhood school use seclusion and restraint as a crisis management strategy? Did you know there aren’t any federal laws restricting these practices in public and private schools, and state laws vary considerably? Guy Stephens, renowned for his work as founder of the Alliance Against Seclusion and Restraint, has provided us with an exclusive article called Could Your Child Be Locked in a Seclusion Room at School? that examines the history, current use, and dangers of restraint and seclusion in American schools. It’s a must-read for all people.

Markeisha Hall, MA, CATP, describes the day she learned her young son was assaulted in his school’s bathroom as devastating.

An educator, IEP Coach, and staunch special needs advocate, Hall jumped into gear and developed action steps and ways to bring awareness so all families can work to protect their children at school. Be sure to read her informative piece, Five Ways To Address Bullying When Preparing a Child’s IEP. Hall’s guidance is important.

With 27 articles in this month’s issue, there’s something valuable for everyone. Please encourage friends and family to subscribe to Exceptional Needs Today for FREE guidance. Let’s continue to work together to promote awareness, acceptance, and inclusion in the exceptional needs community while making meaningful changes for tomorrow.

Additional articles you don’t want to miss include columnist Kate C. Wilde’s thoughtful response to readers’ questions in Creating a Positive Approach To Toileting When There Are Special Needs. And because preparing for the future is so important, educator and exceptional needs mother Sanjukta B. Mukherji, BCBA, LBA, has generously shared her insight into active and considerate transition planning in her piece, Autism Doesn’t End at 18—Now What? And you don’t want to miss dating and friendship coach Jeremy Hamburgh’s thoughtful tips for bridging the gap between the social life young adults have and the one they want in The Autism Parent’s Guide To Friendship and Dating in Five Steps.

Best,

Amy KD Tobik

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

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Exceptional Needs Today | Issue 9 | 7

EXCEPTIONAL EDUCATION

Changing Factors That Inhibit and Restrict Post-secondary Students With Disabilities

By Toby Tomlinson Baker, PhD WHY ARE THERE NOT MORE SCHOLARS WITH ATTENTION-DEFICIT/HYPERACTIVITY DISORDER (ADHD)? ACCORDING TO NATIONAL CENTER FOR EDUCATION STATISTICS (2020), CURRENTLY LESS THAN 30 PERCENT OF STUDENTS WITH DISABILITIES, INCLUDING THOSE WHO HAVE ADHD, ATTEND COLLEGE AND GRADUATE. LESS THAN ONE PERCENT OF STUDENTS WITH DISABILITIES PURSUE MASTERS AND DOCTORAL DEGREES. IF YOU DON’T FINISH YOUR UNDERGRADUATE DEGREE, HOW CAN YOU GO ON TO GET A MASTER’S OR PHD?

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EXCEPTIONAL EDUCATION

When I began the PhD program at Pepperdine University, I started researching adults with learning disabilities and ADHD. I was shocked so few people with disabilities complete college. Even fewer go on to earn master’s and doctoral degrees. I had to know why students with disabilities were not graduating. As an adult with ADHD, I am in this one percent. Yet, I always knew I would graduate and continue my journey in higher education. How was my experience different from other students?

As a college student, I was curious and enjoyed learning.

I was determined to do well in my academics. I sat in the front and interacted with the professor throughout class.

I made friends with other students so I could copy their notes and always went to my professors’ office hours. I’m sure I drove them crazy, but I was determined to pass every class I ever took.

I could choose my major during college, so most of the required classes had meaning to me, and consequently, they were more interesting. When my courses were challenging, I communicated with my professors early on and requested assistance. When tutoring was needed, I arranged it and went whenever I could. I missed none of my classes out of fear I might miss something important. Not every class was easy for me. Sometimes I struggled to keep up. All I did was study, but by visualizing the end—graduation day—I could endure difficult courses.

My parents taught me I could do anything I wanted and be successful without limitations. I’m someone who loves challenges. My determination to earn my bachelor’s degree drove me to pass my classes the first semester, my first year, and the three years following. My goal to graduate was in reach; I did whatever I had to do to succeed.

No matter how challenging a new course was (and I’ve had some classes that were so difficult I cried), I could always get through it when I asked for the support I needed. I couldn’t do anything alone, and I was not too shy to ask for help. I always received accommodations because I knew I needed and deserved them. I usually had my professors supporting me during office hours, as well as guidance from tutors, the writing center, library assistants, and friends in my classes, all contributing to my goal of doing well in each of my classes. During my master’s and PhD programs, I always leaned on my family, friends, dissertation chair, parents, and husband.

little sarcasm as possible, “No, I’m the child being evaluated.” She turned away and looked in the opposite direction.

During my master’s program, I struggled to pass my teacher credentialing exams. I had to undergo evaluation by a licensed psychologist as an adult since I needed accommodations for seven different teaching exams. I didn’t allow the stigma attached to being an adult with a learning disability to discourage me from being evaluated. On the day of my psychologist’s assessment, another woman who was a parent of a young child with a disability sat across from me in the office’s waiting area. She stared at me for a moment, smiled, and asked, “Do you have a child being evaluated?” Because I was an adult (age 27), the woman had assumed that I was a parent. I smiled back and replied with as

Maybe I’m crazy, but I did what I had to do to succeed. I had to receive the accommodations to pass the exams. And once I had the extra time and the private room to minimize distractions, I passed every single test. All seven of them.

Ensuring I was accommodated was essential for moving up in my career. This was how I finally became a licensed teacher.

Perhaps parents of students with disabilities believe their child will never grow up or somehow outgrow their disability. From experience and research, I knew that to receive accommodations for any exam, such as a private testing room and double-time during each exam, I must be evaluated by a licensed psychologist every five years, regardless of my age. Insurance companies do not cover psychological evaluation costs of adults with disabilities, so I put the payment of $3,500 on my credit card.

Some people even discouraged me from pursuing a teaching career and tried to dissuade me with their negative attitudes. Yet, I am unwilling to accept “no” from anyone. When people tell me I can’t or shouldn’t try to do something, de-

Exceptional Needs Today | Issue 9 | 9

EXCEPTIONAL EDUCATION

spite their negativity and discouragement, I do whatever they said I couldn’t or shouldn’t try to do, and I succeed.

Upon earning a Master’s in Education (MEd), I began teaching special education and became a great teacher. In 2018, I was awarded CHADD’s Educator of the Year.

While writing my dissertation and reading the research that described students with ADHD, some articles reported they lacked focus, struggled to finish assignments, sat in the back of the class, had poor attendance, and struggled to connect with teachers and professors. Fortunately for me, I had demonstrated none of those factors. I didn’t fit any of those descriptions. However, I do not doubt that many students with disabilities have had negative experiences in school, which suppressed their interest in learning.

Toby Tomlinson Baker earned her PhD at Pepperdine University in Leadership and Global Policy. She is a lecturer at California State University—Los Angeles (CSULA), and she teaches special education with the Los Angeles Unified School District. Dr. Baker was awarded the Harrison Sylvester Award for her research by the Learning Disability Association (LDA) and has been CHADD’s 2018 Educator of the Year.

Website: https://tobytomlinsonbaker.net/

Like me, some students with disabilities have attended different schools, had trouble complying with adults, and struggled to follow a stringent curriculum. They may have had negative experiences adhering to unrealistic testing expectations. Negative school experiences often have limited students’ creativity, collaboration, and innovation. Consequently, the thought of continuing school through college and paying for it themselves would seem like an obvious deterrent. But college is not like high school. In many ways, college is a blank canvas, and for someone with ADHD, starting from scratch and reorganizing your priorities in life can be both shocking and liberating. Through my research of successful students with disabilities, my mission became to change this grim dropout statistic. Through my example, I want students with ADHD to know they can be successful, are smart, and can be scholars!

As a special education teacher and college professor, I want to help others with learning disabilities and ADHD feel they can succeed too! I have always created a unique type of classroom that was student-centered. My students’ needs come first, whether I’m teaching second graders or master’s level students. My goal is to move my students with ADHD from a place of frustration to a place of genuine learning. By connecting with my students and discovering their strengths, I don’t aim for them just to pass the class but to learn and use that learning in the future.

No student enters college with the dream of dropping out of their college programs. They dream of graduating! Keep going to school. Never be discouraged no matter how often people tell you “No.” Don’t let anyone tell you what you will or won’t do. I always prove negative people wrong, and somehow, I have always done whatever I have set out to do.

Since earning my PhD, I have devoted myself to improving accommodations and the college experience for university students with disabilities.

Never underestimate the power of grit and perseverance, having a vision, and simply having a positive attitude. As educators and scholars with ADHD, we can change the factors that inhibit and restrict post-secondary students with disabilities. We can change the way we teach, and most importantly, we can change the way the world sees post-secondary students with disabilities.

10 | Exceptional Needs Today | Issue 9

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.

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• Who will care for my child when I’m gone?

• How do we access and keep public benefits?

• How much money will it take to support our child?

• Who will care for my child when I’m gone?

• How do we access and keep public benefits?

• How much money will it take to support our child?

SAFETY STRATEGIES

Could Your Child Be Locked in a Seclusion Room at School?

By Guy Stephens THE FIRST TIME I HEARD THE WORDS RESTRAINT AND SECLUSION IN THE CONTEXT OF A SCHOOL SETTING, IT WAS A SHOCK. I WOULD NEVER HAVE GUESSED THAT YOUNG DISABLED CHILDREN ARE SOMETIMES PHYSICALLY RESTRAINED AND FORCED INTO ISOLATION ROOMS AT SCHOOL UNTIL IT HAPPENED TO MY SON. THE THOUGHT THAT A CHILD MIGHT BE PINNED TO THE FLOOR BY SEVERAL ADULT STAFF FOR HAVING A MELTDOWN WAS NOT SOMETHING I COULD HAVE IMAGINED.

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SAFETY STRATEGIES

If you had told me children were forced into small, padded rooms at school and not allowed to leave, I’m not sure I would have believed you. “Not at my school,” I might have said. Unfortunately, I now know it happens, and it happens far more often than I could have ever envisioned.

Restraint and seclusion are outdated crisis management strategies used in many schools across the nation. Physical restraint is a holding technique to reduce a person’s ability to freely move their torso, arms, legs, or head. Physical restraint is a tactic often used in law enforcement settings to subdue an uncooperative subject. Seclusion is the involuntary confinement of an individual alone in a room or area where they are physically prevented from leaving. These interventions are dangerous and can lead to lifelong trauma, serious injuries, and even death.

If restraint and seclusion are outdated and dangerous strategies, why are they used in schools? Let’s go back in time a bit. The use of physical restraint and seclusion techniques in psychiatric settings originated in 18th-century Europe.

By the mid-20th century, these controversial practices were common in psychiatric hospitals across the United States. At that time, efforts were underway in England to decrease the use of restraint. However, in the United States, it was seen as a therapeutic treatment and accepted practice for dealing with “violent” patients. In the 1950s, the restraint of children considered “emotionally disturbed” became a more common practice (Ryan & Peterson, 2018).

How did these practices make their way into schools? It was not too long ago that most children with disabilities were not welcome in American schools. In 1970, schools in the United States educated only one in five children with disabilities, and many states had laws excluding most children with disabilities. In 1975, Congress enacted the Education for All Handicapped Children Act (EHA), which opened the schoolhouse doors for previously excluded children (U.S. Department of Education, 2022). As children with disabilities gained access to education, schools had to determine how to support those they had not previously served. Unfortunately, this resulted in restraint and seclusion practices being used in schools across the country.

Much has changed since the Education for All Handicapped Children Act (EHA) was passed into law almost 50 years ago.

In the 1990s, EHA was reauthorized as the Individuals with Disabilities Education Act (IDEA). Today, we have federal regulations in law enforcement and medical settings around the use of restraint and seclusion. However, there are no federal laws restricting the use of seclusion and restraints in public and private schools, and state laws vary considerably. Another significant change that has occurred over the past half-century has been advances in neuroscience and our understanding of how the brain works and responds to trauma and stress.

The advances in neuroscience provide a foundation to better support children in classrooms across the country while elim-

inating dangerous practices like restraint and seclusion.

Could your child be locked alone in a seclusion room or physically restrained at school? Yes, it is possible. While a few states have banned seclusion, all allow for some form of physical restraint. If your child is disabled and/or a person of color, there is a greater chance they could be restrained and secluded at school. If your child is very young—five, six, or seven years old—they are more likely to be restrained and secluded. A child with a trauma history is more likely to be restrained and secluded. If your child is not in a general education setting, they are more likely to be restrained and secluded. Data from the Department of Education Office of Civil Rights indicates

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SAFETY STRATEGIES

that 80 percent of physical restraints and 77 percent of seclusion orders in public schools across the nation are being done to disabled children. The disproportionate use of restraint and seclusion is a civil, human, and disability rights issue (U.S. Department of Education, 2020).

You might assume you would know if your child is being restrained or secluded at school. The truth is parents are sometimes unaware it is happening. Many instances of restraint and seclusion go unreported, and caregivers are not notified.

There is no federal law in terms of parental notification. Surely my child would tell me if they were restrained or secluded at school, you might think. However, many children do not or cannot say to their caregivers that they were restrained or secluded. Nonspeaking children are more likely to experience these punishments and may lack the ability to communicate what was done to them. Your only indication might be unexplained bruises, scratches, and sudden school avoidance.

Some children feel shame and are not eager to come home and share what happened to them at school. Some kids even assume their caregivers know everything that happens to them at school and might believe you are already aware they were restrained or secluded.

Why are children restrained and secluded in schools? According to federal guidance, restraint or seclusion should never be used except when a child’s behavior poses an imminent danger of serious physical harm to self or others. The guidance goes on to say restraint and seclusion should be avoided to the greatest extent possible without endangering the safety of students and staff. The “imminent danger of serious physical harm” phrase has a legal definition that equates to a life-ordeath danger. So, according to federal guidance, restraint and seclusion should only be used in potentially life-threatening situations (U.S. Department of Eduction, 2012); this, however, is not the case. Most restraint and seclusion incidents arise from noncompliance, disrespect, minor behaviors, work refusal, and power struggles. Looking beneath the surface, children are restrained and secluded when they cannot meet the behavioral expectations placed on them by teachers and staff.

While it may be necessary to restrain a child in an actual life-threatening situation, those situations should be exceedingly rare. We sometimes hear the idea that seclusion is a safe and calming intervention. Nothing could be further from the

If restraint and seclusion are outdated and dangerous strategies, why are they used in schools?

truth. Nothing is calming about being thrown into a room against your will, alone, while someone holds the door shut.

Initially, children may respond by kicking, screaming, and beating on the walls to escape. Eventually, lacking the developmental capacity to self-regulate, children’s brains will begin to shut down, and they may enter a survival state—this is not calm. Seclusion is not an appropriate intervention for a child.

Why are physical restraint and seclusion dangerous? When restraint and seclusion are used, staff use force to gain compliance. The moment you go hands-on with any child, you significantly increase the risks to all involved. A child will probably go into a fight-or-flight survival brain state when staff gets physical. The child’s heart rate will increase, blood pressure will increase, and adrenaline is released as the body prepares to fight or run. The child is no longer accessing the thinking part of their brains; they are in a survival state. Staff may also become escalated and enter a fight-or-flight brain state. In this survival brain state, the chances of physical injury increase for everyone involved. These interventions are dangerous. Anything that can be done to reduce risks and maintain safety for all involved should be considered.

Fortunately, there are many alternative approaches to better support our children. Grafton Integrated Health in Virginia developed a method called Ukeru, a trauma-informed alternative to restraint and seclusion. Grafton eliminated seclusion in all the schools and residential facilities it manages and now teaches the approach to other schools. Dr. Bruce Perry, a leading trauma expert, developed the Neurosequential Model for Education, which is proven to reduce the use of restraint in trauma-exposed youth. Dr. Ross Greene developed the Collaborative and Proactive Solutions Model, an evidence-based approach to minimize restraint, seclusion, suspensions, expulsions, and corporal punishment. Dr. Mona Delahooke developed an approach called Beyond Behaviors, which helps educators understand the neuroscience behind behavior and ways to better support children.

If you suspect restraint or seclusion could be happening in your child’s school, you should talk to your child and their school team. The long-term impact of even one incident can be devastating. There are better things that can and should be done to support your child.

To learn more about restraint and seclusion, visit the Alliance Against Seclusion and Restraint at www.endseclusion.org.

References Colaizzi, J. (2005). Seclusion & restraint: A historical perspective.

Journal of Psychosocial Nursing & Mental Health Services, 43(2), 31-7. Retrieved from https://www.proquest.com/scholarly-journals/ seclusion-restraint-historical-perspective/docview/225533207/se2?accountid=14696 Logan, S. (2021). The historical use of restraints in asylums. Kentucky Historic Institutions.

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SAFETY STRATEGIES

Retrieved April 15, 2022, from https://kyhi.org/2021/06/15/thehistorical-use-of-restraints-in-asylums/ Ryan, J. B., & Peterson, R. L. (2018, July 10). Physical restraint in school. Michigan Positive Behavior Support (PBS) Network. Retrieved April 15, 2022, from https://www.bridges4kids.org/PBS/articles/ RyanPeterson2004.htm U.S. Department of Education. (2012). Restraint and seclusion: Resource document. Retrieved April 15, 2022, from https://www2. ed.gov/policy/seclusion/restraint-and-seclusion-resource-document. html

U.S Department of Education. (2020). 2017-2018 Civil Rights data collection: The use of restraint and seclusion on children with disabilities in K-12 schools. Office of Civil Rights. https://www2.ed.gov/ about/offices/list/ocr/docs/restraint-and-seclusion.pdf U.S. Department of Education. (2022). A history of the Individuals with Disabilities Education Act.. Individuals with Disabilities Education Act. Retrieved April 15, 2022, from https://sites.ed.gov/idea/IDEAHistory#1980s-90s

Guy Stephens lives in Southern Maryland with his wife and two amazing children. He started The Alliance Against Seclusion and Restraint to raise awareness about the use of restraint and seclusion in classrooms across our nation.

He has been meeting with local, state, and federal lawmakers to support legislation to ban seclusion and reduce the use of restraint in schools across the nation. Guy is the Executive Director of The Alliance Against Seclusion and Restraint.

Website: https://endseclusion.org Facebook: https://www.facebook.com/endseclusion Twitter: https://twitter.com/endseclusion LinkedIn: https://www.linkedin.com/company/65509948/admin/ YouTube: https://www.youtube.com/c/AllianceAgainstSeclusionandRestraint Instagram: https://www.instagram.com/endseclusionorg

Don't you wish there was a "magic" formula for activities and games that...

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She shares "Presto Chango" beliefs - the five mindsets you need to power activities - as well as how to understand the magic of timing and knowing when to start and stop an activity based on your loved one's cues.

Exceptional Needs Today | Issue 9 | 15

SAFETY GOALS WITH

NICOLE

REDUCING THE RISK OF ABUSE WITH CHILDREN WITH DISABILITY

The Time To Create a Safety Plan For Your Child Is Now

By Nicole Moehring

T

here is an old saying: “Knowledge is power.”

Although it might seem cliché, it applies even more so when protecting children who have disabilities. When a child has a disability, people assume the child is less likely to be abused, therefore, there is no need to have conversations with them. This couldn’t be farther from the truth. The best way to reduce the risk of abuse is through education. When parents take the time to educate themselves about abuse, they will become more aware of the individuals who care for their children and know what questions to ask. It’s also essential to become familiar with the signs of abuse and learn how to report it and what to expect. Conversations need to start between parents and children from a young age, at home, no matter how difficult they are.

Even if a child is nonverbal, teaching our children the importance of the word “No,” is necessary from an early age.

Nonverbal children can be taught through actions—they can say “No,” by making loud noises, stomping their feet, or making body motions to gain someone’s attention. For children who are verbal, they can also learn to say “No,” through yelling or shouting.

How to begin the conversation with a child with disabilities about abuse

It is also vital to create a family safety plan together. Once the plan is created, it should be printed out and put somewhere easy for everyone to see. That way, no one will forget the family’s rules. You should discuss the family safety plan with anyone who has direct contact with your children, like doctors, family members, teachers, babysitters, and caregivers.

As parents, it’s imperative that once we have educated ourselves on the risk factors involved with children with disabilities being more vulnerable to abuse, we begin having conversations with our children. Since children with disabilities learn differently, it is also vital that these conversations happen over time and are ongoing. The conversations need to be at the child’s cognition level so they can comprehend important topics such as body safety, abuse, boundaries, and how to tell someone if they have been abused, to name a few. You should include these conversations in other ongoing conversations as your child grows and develops and is exposed to new situations. This way, they will constantly be reminded of the importance of body safety, awareness, etc.

Teaching safety skills Often, children with disabilities do not have any concept of “fear.” Therefore, teaching ongoing safety skills is essential.

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Because each child is unique, their responses will be unique. There is no right or wrong way. The important thing is to be sure to communicate with anyone who works closely with or cares for your child. They need to know what is being taught to your child and how they are being taught to respond so they can recognize or reinforce your child’s use of those lessons. Everyone should be on the same page.

Creating a Circle of Five for your family Your family’s safe circle is a group of adults who play a significant role in your child’s life that you and your child trust.

These individuals should be willing to become educated on body safety and autonomy so they can protect your child as you would. If the child is able, they should help choose who is in the family’s Circle of Five.

Once the individuals are chosen, invite them to a discussion and explain why you are creating your circle and your expectations for joining before asking if they are willing to commit.

SAFETY STRATEGIES

It is essential to re-visit this Circle of Five yearly and communicate with your children each time. Talk openly about their feelings about the individuals on this list and if their feelings may have changed. If so, why?

•

Safety rule ideas: • • • • • •

•

Use proper names for all body parts, including private parts No one is to touch them where a bathing suit goes Never touch or look at anyone else’s private parts Boundaries keep them safe. Speak up if they feel someone is crossing those boundaries Respect their’s and other people’s boundaries, privacy, and personal space No means NO! Teach them they are the boss of their

• • •

bodies, and they have the right to say “No” to anyone at any time, for any reason We do NOT keep secrets in our family, and no one should ever ask them to keep a secret. Exception: surprises when planning special events Whenever they don’t understand something, speak up and ask questions, no matter what the topic is Talk about any feelings they are having at any time, and someone will be there to listen and help Tell a trusted adult within our Circle of Five, or the police, if someone touches or talks to them in ways that make them feel uncomfortable Teach about unsafe situations and predators online.

Do not allow them to use the computer, phones, iPads, or any electronic devices without permission from someone within our Circle of Five.

Nicole Moehring’s daughter and son, who has Fragile X Syndrome and autism, were both victims of sexual abuse.

As a mother suffering through this unbelievable nightmare, Nicole witnessed extreme differences in the justice system of how her daughter was believed and treated well when her son was not. She also quickly recognized the distinct differences in recovery, trying to find support, and resources. Nicole and her daughter Maci founded Voices of Change 2018 (VOC18), a nonprofit organization, to begin making much needed change for children with disabilities and their families.

VOC18 is a national organization piloting their groundbreaking programs in Ohio. VOC18 is in the process of developing preventative education programs for children with disabilities while empowering parents and guardians. By sharing their lived experiences and through collaborations with other individuals, mental health professionals, law enforcement, and organizations, they are building a foundation of advocacy, abuse awareness, resources, and supports for children with disabilities.

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

Exceptional Needs Today | Issue 9 | 17

SKILLS FOR LIFE

Giving Kids a Voice:

Promoting Early Self-advocacy Among Children With Disabilities

By Rose Adams, MS, OTR/L

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SKILLS FOR LIFE

W

hy should we give kids a voice? Giving kids a voice teaches and prepares young children with disabilities to become self-advocates in their educational and life experiences (Barnard-Brak & Fearon, 2012; Palmer et al., 2013).

Let’s consider five simple strategies to promote voice: Involvement, Choices, Support, Exploration, and Feedback.

1. Involvement

As early childhood educators, clinicians, and caregivers, we might promote voice by giving children the opportunity to be more involved in their learning experiences.

Children benefit from being actively involved in their learning experiences (Freeman et al., 2014; Pekdoğan & Kanak, 2016; Yee & Boyd, 2018). In early childhood, learning usually occurs through play (Hart Barnett, 2018). Play is a childhood occupation that involves being actively engaged in activities that are personally motivating, meaningful, and chosen by the child (AOTA, 2020). Provide children with opportunities to help plan, structure, and even modify their play and learning experiences. Can you think of examples where you have involved or watched someone else involve young children as active learners? How did involvement support the child’s performance? Collaborate with caregivers and other professionals and begin to see children not only as participants but as partners in their educational and learning experiences (AOTA, 2020; Hart Barnett, 2018; Palmer et al., 2013; Quinn & Owen, 2016).

3. Support

We support children in various ways. For example, we may help them by ensuring basic needs are met, tending to a hurt “boo-boo,” and even by setting up virtual or in-person playdates. Have you thought about supporting a child when they are most motivated, interested, and want to be supported? One way to support children’s voices is to learn about and discover what matters to them and their caregivers. Occupational therapists are skilled at helping people throughout their life span by identifying and engaging in the things that matter most to them (AOTA, 2020). Another way to support children’s voices is to understand their individual differences and learning preferences (Palmer et al., 2013). Howard Gardner’s theory of multiple intelligences (MI) provides an overview into understanding learning preferences (Armstrong, 2017).

We can support our students in the ways in which they learn best and according to their individual strengths and interests (Aspy & Grossman, 2011). Furthermore, since our brains respond to novelty (Yee & Boyd, 2018), providing children with opportunities to explore and experience new and different ways to learn supports their developing and ever-changing brains.

4. Exploration

Armstrong (2017) uses the theory of MI to provide practical examples of how we can support children’s learning preferences in educational settings. Let’s take it back for a moment as I share an example of my twin boys during play in toddlerhood:

2. Choices

One way to support involvement among young children is through choice (Hart Barnett, 2018). Children should be encouraged to choose what, how, when, where, and with whom they want to learn (Palmer et al., 2013; Quinn & Owen, 2016). So, where do we begin? Start by asking questions. Then provide supportive answers or help them find answers to their questions. In addition, create opportunities where children have a choice in deciding how they would want to participate in their learning experiences.

Let’s take a preschool classroom with a group of neurodiverse learners, for example. The teacher is covering a theme or lesson on plants. How might choices be promoted in this setting? It starts with understanding that all children have unique perspectives and bring something valuable to the group. Then, in collaboration with all partners (students, school-based clinicians, caregivers), provide different ways to experience the concept. Examples of choices in this scenario might include the choice of location (indoors or outdoors), type of media (i.e., watching a fun and engaging video versus looking at pictures), or other sensory-rich experiences such as singing, movement, listening to a song or audiobook, or planting a classroom window garden. When we provide young children with choices in their everyday experiences, it lets them know we value their choices and voices.

Exceptional Needs Today | Issue 9 | 19

SKILLS FOR LIFE

Taking it back When my now six-year-old, identical twin boys were much younger, we realized they had different and nearly opposite learning and play preferences. When one of our boys was just about two years old, our caregiver observed he was into building and constructing. He liked stacking boxes and creating anything he could find to make what we call “inventions.” One day he made a hand-vac using stacked Lego blocks with a set of car wheels at the bottom. To this day, he spends time constructing and building things. He enjoys reading picture instructions included in new toys and figuring out how to put them together. He appears to prefer visual and hands-on activities.

On the other hand, our other son showed a preference for musical instruments and picture books early on. He also enjoyed it when I sang to him. These days, he is the one to select songs or shows for the entire family to watch. He continues to enjoy books and draws and colors with meticulous detail. He appears to be drawn to visual and auditory experiences.

In this example, our boys showed different learning preferences. At the time, we were not thinking about preferences, but helped create opportunities to explore different learning methods while supporting them where they were. Exploration supports a child’s current learning preferences and sparks an interest in different ways of engaging with their environment (Hart Barnett, 2018; Yee & Boyd, 2018).

Promoting Exploration in Early Childhood How can we promote exploration in early childhood settings? Opportunity, opportunity, opportunity. Student success can be promoted when they are provided with access and opportunity to explore their world through varied experiences (Palmer et al.; 2013; Quinn & Owen, 2016). So, what happens when opportunities are presented, but the child does not appear to be interested or needs support with exploring? Be patient, provide encouragement and choices, and reintroduce the activities in different ways and at other times.

5. Feedback

How often do we seek or ask for feedback during our interactions with children? Remember, if children are partners in their experiences, why not seek feedback?

Young children can provide valuable information about their learning experiences (Palmer et al., 2013; Quinn & Owen, 2016). Whether you receive the feedback as positive or not so positive, there is value in what they have to say. How can you seek and receive feedback from young children with disabilities?

Some examples are asking questions, having a discussion, or using other means of communication such as emotion or emoji cards, gestures (thumbs-up or down), sign language, personal communication devices, and tactile communication systems, among others. If I can name one thing I have learned from working with

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young children, it would be honesty. Early in my career, I worked at an outpatient sensory gym. One day, I came into work with my hair styled in a fancy up-do for my birthday. When my elementary-aged client walked in, he said, “Ms. Rose, your hair looks like a tornado!” His mom was embarrassed but couldn’t help laughing with her face hidden. I also laughed and validated his observation. Although I didn’t ask for feedback, my client provided it, and he was right! My hair bun looked like a tornado. If you ask a young child and genuinely show you value their input, they will provide the feedback you’ve asked for and more!

Where do we go from here?

Remember that voices are not only heard, but can be seen, felt, and experienced. Start today by involving children more as partners rather than recipients of their experiences. Provide them with choices when planning and executing learning activities and support them in areas of strength, interest, and preferences. Lastly, provide opportunities for them to explore learning in different ways while seeking to receive feedback during and after every experience. Now, take what you already know and what you will discover about the children with whom you work and help them become early self-advocates.

Let’s help give kids a voice.

References American Occupational Therapy Association. (2020). Occupational therapy practice framework: Domain and process (4th ed.). American Journal of Occupational Therapy, 74(Suppl. 2), 7412410010. https:// doi.org/10.5014/ajot.2020.74S2001 Armstrong, T. (2017). Multiple intelligences in the classroom.

ProQuest Ebook Central. https://ebookcentral.proquest.com Aspy, R., & Grossman, B. G. (2011). The Ziggurat Model 2.0: A framework for designing comprehensive interventions for highfunctioning individuals with autism spectrum disorders. Autism Asperger Publishing Company.

Barnard-Brak, L., & Fearon, D. D. (2012). Self-advocacy skills as a predictor of student IEP participation among adolescents with autism. Education and Training in Autism and Developmental Disabilities, 47(1), 39–47. http://www.jstor.org/stable/23880560 Freeman, S., Eddy, S. L., McDonough, M., Smith, M. K., Okoroafor, N., Jordt, H., & Wenderoth, M. P. (2014). Active learning increases student performance in science, engineering, and mathematics.

PNAS, 111(23), 8410- 8415. https://www.pnas.org/content/ pnas/111/23/8410.full.pdf Hart Barnett, J. (2018). Three evidence-based strategies that support social skills and play among young children with autism spectrum disorders. Early Childhood Education Journal, 46(6), 665–672. https://doi.org/10.1007/s10643-018-0911-0 Palmer, S. B., Summers, J. A., Brotherson, M. J., Erwin, E. J., Maude, S. P., Stroup-Rentier, V., Wu, H.-Y., Peck, N. F., Zheng, Y., Weigel, C. J.,

SKILLS FOR LIFE

Chu, S.-Y., McGrath, G. S., & Haines, S. J. (2013). Foundations for selfdetermination in early childhood: An inclusive model for children with disabilities. Topics in Early Childhood Special Education, 33(1), 38–47. https://doi.org/10.1177/0271121412445288 Pekdoğan, S., & Kanak, M. (2016). A qualitative research on active learning practices in preschool education. Journal of Education and Training Studies, 4(9), 232-239. http://dx.doi.org/10.11114/jets. v4i9.1713

Quinn, S. & Owen, S. (2016). Digging deeper: Understanding the power of ‘student voice.’ Australian Journal of Education, 60(1), 60– 72. https://doi.org/10.1177/0004944115626402 Yee, K., & Boyd, D. E. (2018). How can we amplify student learning?

The ANSWER from cognitive psychology. Faculty Focus. https:// www.facultyfocus.com/articles/teaching-and-learning/how-can-weamplify-student-learning-the-answer-from-cognitive-psychology/

Rose Adams, MS, OTR/L is an occupational therapist who works with clients on the autism spectrum and other neurodiverse needs. She has worked in schools, private practice settings, and community-based programs.

She is the director at Changing Lives Occupational Therapy, P.C., and currently works at a community-based preschool in New York. Rose is pursuing her doctorate degree in occupational therapy at Boston University’s Post Professional Occupational Therapy Doctorate (PP-OTD) program. Her doctoral project focuses on using songbased interventions to support young children with disabilities’ participation in school-based occupations.

Email: roseadamsot@gmail.com

Exceptional Needs Today | Issue 9 | 21

EXCEPTIONAL EDUCATION

My Child With Special Needs Believes Their Teacher Doesn’t Like Them

By Dr. Ronald I. Malcolm

22 | Exceptional Needs Today | Issue 9

EXCEPTIONAL EDUCATION

H

aving your child tell you their teacher doesn’t like them can be tough. No parent wants to hear this comment from their child. Such a statement can cause panic in the heart of any parent. Rather than react hastily, it is important to remain calm and try to advocate for your child in a professional manner.

Here are 10 simple suggestions to consider when following up on your child’s comment:

1. Listen to your child

As your child with a disability expresses themselves, it is essential you listen carefully to them. Take notes on what your child is telling you if possible. Your notes may be something you will need to refer to at another point in time. As your child shares their concern, you need to remain calm and composed, so they don’t shut down as they begin to explain themselves.

Your child will watch you and likely copy or cater to your reactions. Children need to feel comfortable expressing themselves to their guardians without fear of being punished or judged.

sometimes more profound interventions may be necessary.

Your child’s perceptions may be correct, and the teacher may not feel comfortable with your child’s disability. The teacher may have had a negative interaction with someone with a similar disability in the past and is projecting their feelings on your child. Your child’s teacher may feel ill-prepared for how to interact or work effectively with your child’s circumstances.

The local Director of Special Education can assist by directing both you and the classroom teacher towards some resources that can help the teacher with obtaining the necessary skills to work with your child effectively. The Director of Special Education can also begin to research in-service training that could improve the general education teacher’s relationship with your child.

2. Validate their feelings As your child continues to express their feelings, it is crucial that you don’t overreact. Continue to listen. It may be challenging not to become reactive. However, your child needs to know you value and appreciate their ability to share feelings. They may be more likely to continue the conversation if you continue to listen and not react actively. Remember to thank your child for sharing this information with you. This is not the time to determine if the information is accurate. It is simply a time to listen to your child’s perspective.

3. Talk to your child’s teacher

Your child may be apprehensive about you talking to their teacher. They may fear the teacher will dislike them even more or worsen the situation. Despite this, it is important to speak to the classroom teacher to allow them to have a voice.

Regardless of whether the situation is true, everyone needs to be aware of the child’s perception. Work together with your child’s teacher to develop a plan to deal with this situation sensibly and immediately.

4. Talk to your school principal

The placement of children with disabilities into regular education classrooms has certainly come a long way in the past 40 years. Previously, most children with disabilities were placed in separate educational settings. If, after talking with your child’s teacher, you believe a problem exists between them and your child, you may need to have the school principal intervene. Making your child’s principal aware of this possible concern can assist with the situation being monitored during the school day.

5. Talk to the Director of Special Education

The situation between your child and their classroom teacher can be resolved with some simple interventions. However,

Exceptional Needs Today | Issue 9 | 23

EXCEPTIONAL EDUCATION

6. Meet with the school counselor

Whether your child’s perceptions of how their classroom teacher thinks are correct or not, it is still how they feel.

Most children with disabilities spend more time during their day with their classroom teacher than they do with their parents/caregivers. Therefore, their overall academic, social, behavioral, and emotional skills could be negatively impacted if they are involved in an educational environment where they feel disliked or overlooked. A school counselor could set up sessions with your child to teach them coping skills and how to enhance their self-advocacy skills regarding how to effectively deal with their perceptions or issues surrounding their own disability.

7. Call for an IEP meeting

Your child may have an Individualized Education Program (IEP) at their school. This means they have access to a team of professionals that have a vested interest in their educational success during their school day. The team must be aware of your child’s feelings. Together, all these professionals can brainstorm how better to assist both your child and the classroom teacher. As a parent, if you feel uncomfortable addressing this issue alone at an IEP meeting, request an advocate accompany you to the meeting. Some organizations can provide an advocate at no cost to assist you at your child’s IEP meeting.

8. Involve yourself in the school

As an effective advocate for your child with a disability, your presence at the school can become vital. You could volunteer to be a room parent, assist on the playground, join the PTA, sponsor a club, sport, or after-school activity, or even observe in your child’s classroom. The point of observing in the classroom is not to cause a disruption or stress out the classroom teacher. Instead, this may give you a better idea of why your child may feel disliked by the classroom teacher.

Most schools require a 24-hour notice that you plan to observe in your child’s classroom, so you need to prepare. Being actively engaged and visible at your child’s school could make a positive impact.

9. Seek outside counseling

Your child may perceive the feelings of their teacher in error.

If this is the case, your child may require counseling support and services outside the school environment. Work with your child’s pediatrician and a mental health professional to address their feelings and perceptions.

10. Requesting a new teacher

If it is determined that your child’s perception of their classroom teacher is indeed accurate, then you may have to work with the school principal to address this issue directly.

No child should have to endure a classroom environment where the educator dislikes them. Your last effort to ensure your child’s mental health and preserve their self-esteem may

24 | Exceptional Needs Today | Issue 9

lead you to request a change in the educator working with your child. The main person involved in assisting in making this change will be your child’s school principal. Involving them early in this process will help you and your child with a disability.

Dr. Ronald I. Malcolm, EdD, is an Assistant Director of Special Education for a public school district, an Associate Faculty Member with the University of Phoenix, and a Special Graduate Faculty member at the University of Kansas. He has bachelor’s level degrees in English and Special Education. He holds master’s level degrees in Counseling, Special Education, and School Administration. His doctorate degree is from Northern Arizona University in Educational Leadership. His post-graduate degrees are in Positive Behavior Supports and Autism Spectrum Disorders. He has worked for the past 37 years with students between the ages of three to 21 with various healthrelated concerns in both school and community-based settings.

PARENTAL SUPPORT

Five Ways To Address Bullying When Preparing a Child’s IEP

By Markeisha Hall, MA, CATP

Exceptional Needs Today | Issue 9 | 25

PARENTAL SUPPORT

MY YOUNGEST WAS FINALLY GOING TO GO TO SCHOOL AFTER THE PANDEMIC. THE “BIG SCHOOL,” AS HE CALLS IT. GOING TO SCHOOL AFTER THE PANDEMIC WAS GOING TO BE EVEN MORE DIFFERENT AS WE ALL EXPERIENCED THE REALIZATION: WE WON’T EVEN TALK ABOUT ONLINE LEARNING, WILL WE? Since my husband and I are in special education, our son’s Individualized Education Program (IEP) was airtight. We felt confident he could access his school day, general education with the Resource Support Program (RSP), and speech and occupational therapy (OT). First grade, here he comes!

Now, we are not rookie parents. We have three older kids and know intimately many of the issues that happen at school. We addressed those things in our son’s IEP, but one thing we had not thought of at his age was bullying.

In September 2021, my son was assaulted in his school’s bathroom. Writing this and talking about it is still devastating and difficult. What is even more heartbreaking is that no one knew.

My son does speak; however, he is still working on communication. When asked about his day that day, he said the same thing he says every day. It wasn’t until I read his communication log with his teacher that I read, “Josiah came back from the bathroom crying and upset; he could not tell me why, so I told him to show or tell me when he is ready.” It then went on to say, “At recess, he brought me to a kid and said the kid was mean to him. The student admitted to saying something mean to him, so I made him apologize.”

There are two main times I find out what is going on with Jo: during our walks or during bath time. He began to say things like “ouch” and “arm.” It did not take me long to put together what the teacher said in the communication log and the random accounts of his day.

There was more that went into this, of course, and it has since been handled. Despite this, we are still scarred from the incident, and him being so vulnerable in situations like this is so scary. At the same time, there are some wonderful classmates and friends he has made being in an inclusive setting that have brought him so much joy this year!

With that being said, I want to bring awareness and action steps to this issue so you can best protect your child before this happens.

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PARENTAL SUPPORT

In 2014, the Centers for Disease Control and Prevention and the Department of Education released the first federal definition of bullying. The definition includes three core elements: • • •

Unwanted aggressive behavior The observed or perceived power imbalance Repetition or high likelihood of repetition of bullying behaviors

This definition helps determine whether an incident is bullying, another type of aggressive behavior, or both. When bullying is directed at a child because of their established disability, and it creates a hostile environment at school, bullying behavior may cross the line and become “disability harassment.”

Under Section 504 of the Rehabilitation Act of 1973 and Title II of the Americans with Disabilities Act of 1990, the school must address the harassment.

IEPs, as well as 504 plans, can help outline supports and services that can prevent and respond to bullying and harassment of disabled students.

IEP goals for the student can include self-advocacy skills that will help them communicate what is going on at school and how to respond.

Here are five ways to address this issue in your child’s IEP: 1. Add self-advocacy goals 2. Ask about what type of social skills groups are offered at your child’s school 3. What type of School-Wide Bullying/Inclusion Programs and Training does your child’s school offer? (You can ask for trainings in your IEP.) 4. Document, document, document (put into writing your concerns) 5. You can request a copy of your school district’s discrimination, harassment, intimidation, and bullying policy and complaint process. Your school district might have its policy and complaint process available on its website I hope this helps, as we are all looking out for the best interest of our kids and working towards the betterment of their futures.

Additional Resources www.stopbullying.org https://www2.ed.gov/about/offices/list/ocr/docs/howto.html

Markeisha Hall, MA, CATP, is an IEP Coach, Certified Autism Travel Professional, Parent Empowerment Partner, and CEO of Hallegacy, LLC. She also is married to her college sweetheart and has four beautiful children. After 11 dedicated years of facilitating over two dozen IEP meetings annually as a member of the Early Childhood Assessment Team, Markeisha knew she needed to be a Special Education Teacher and advocate to help parents be more impactful members at the table. In 2018, Markeisha became more intimate with this reality when her family adopted their youngest son. During the adoption process, he was diagnosed with autism. Markeisha is now bringing her IEP process mastery and special education expertise into consulting services to help parents take the lead on their students’ educational roadmap, create more inclusive educational and recreational experiences, and shift from awareness to empowered action.

Websites: https://expert-writer-2426.ck.page/, https:// markeishahall.ck.page/products/my-first-iep-guide, https:// markeishahall.ck.page/products/top-travel-tips-forfamilies-with-special-, https://www.markeishahall.com/ pepsquadparentadvocate Podcast: https://markeishahallpodcast.buzzsprout.com/ Facebook: https://www.facebook.com/hallmarkeisha Instagram: https://www.instagram.com/markeisha_hall/ Newsletter: https://www.markeishahall.com/empoweredparent-newsletter

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Exceptional Needs Today | Issue 9 | 27

EXCEPTIONAL BOOKS

Parenting Autism: Nurturing and Celebrating Your Unique Child

By Sanjukta B. Mukherji, BCBA, LBA Sanjukta’s foray into the world of autism occurred with her son’s diagnosis. Over the following two decades, she has worked in various capacities with individuals on the spectrum—as a high school special education teacher, as a clinician (BCBA) in early intervention clinics, and currently as a postsecondary transition specialist. This book collates the experiences of the early years and attempts to provide practical strategies to parents, teachers, and all staff members working with a child diagnosed with a development difference like autism.

who they are and help them live independent and fulfilling lives.

The book reached the Number One bestseller position on Amazon in its category and is available on Amazon worldwide.

The chapters trace the journey from initial signs, receiving a diagnosis, and overall strategies for successful school readiness, community readiness, and home living. Peppered through the 10 chapters are her anecdotes as a parent that relate to the aspect addressed in that chapter. The strategies are primarily based on the sciences of applied behavior analysis that caregivers can implement in their daily life and routines.

Examples of goals, whether in an Individualized Education Program (IEP) or during a family dinner at a restaurant, have been provided for differential skill levels in tabulated format.

The purpose of this book is for us to celebrate our children for

Buy It Here: https://amzn.to/3q1ZDXO

Sanjukta B. Mukherji, BCBA, LBA, is a Board-Certified Behavior Analyst based in Houston, TX. She has two decades of professional and life experience working with neurodiverse individuals in clinical, educational, workplace, and community settings. She is a former special education high school teacher and is currently a Behavior and Transitions Consultant, providing behavior analytical services to school districts, clinics, and employers. Her focus is to impart functional academics and behavior supports in the classroom, create opportunities for inclusion at all levels, and promote sustainable long-term services and supports to adults of all abilities.

Facebook Live: https://www.facebook.com/ChaiTimeHouston/videos/1184581165684160

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Exceptional Needs Today | Issue 9 | 29

EXCEPTIONAL ADVOCATE

Disproving Misconceptions About Nonspeaking Autistics: We Are the Evidence

By Noah Seback THESE DAYS, CONSPIRACY THEORIES SEEM TO LURK AROUND EVERY CORNER. MYTHS AND LORE ACCUMULATE AROUND INTRIGUING PHENOMENA, BUILDING A FOLLOWING BOTH FOR AND AGAINST. ONE SIDE SWEARS BY, HOLDS UP AS TRUTH, THE EXACT POSITION THE OTHER IS SIMULTANEOUSLY AND TIRELESSLY TRYING TO DEBUNK. WHAT IS THE TRUTH?

30 | Exceptional Needs Today | Issue 9

EXCEPTIONAL ADVOCATE

MISCONCEPTION 1: We can’t think

The vast majority of people believe nonspeaking means nonthinking. This is false. Let me repeat: this is false. Our complex movement and sensory differences props up this misconception. We cannot speak richly and robustly with our mouths.

We don’t follow commands and directions correctly. We have body language, movements, and responses that telegraph poor awareness and attention. We make noises and sounds; we act and react in ways deemed inappropriate for the situation. We score abysmally on IQ tests, prompting educators to focus on basic kindergarten concepts throughout our academic curriculum, even in secondary school.

Altogether, our outward presentation screams intellectual impairment. But here is the truth: our cognition is not impaired.

We are intelligent and often brilliant in our thinking. It is difficult for people to reconcile our outward appearances with this fact. Nonspeaking autistics historically could not set the record straight because of our inability to communicate. This lack of communication has just served to reinforce the idea we are devoid of any way to communicate.

If lack of brainpower isn’t keeping us from communicating in traditional ways, then what is? It is the lack of a good connection between our brains and bodies. We know what we want our bodies to do, but cannot execute the motor actions needed.

We call this the brain-body disconnect, also known as apraxia: a neurological condition resulting in a breakdown between planning and executing a motor movement. In the case of speaking, we know the words but can’t get the muscles controlling our mouths to say what we are thinking. Two-thirds of all people diagnosed with autism demonstrate some level of apraxia.

Each side seeks authentication—undeniable proof to validate their belief—but more often than not, each side clings to their position no matter the evidence. Am I talking about Area 51 and alien abduction? Maybe JFK and the man on the grassy knoll or Bigfoot? Flat earthers? Birthers?

As a matter of fact, no. I’m referring to the emerging phenomena of nonspeaking autistics, minimally speaking autistics, and unreliable speaking autistics. We have always existed; however, the truth about us is finally emerging. Misconceptions abound in all the places the so-called “experts” tell us to look. But as it turns out, we are the experts on us, and we can debunk these long-held fallacies. Unfortunately, changing an established paradigm does not happen easily. Many cannot venture to open their minds and think outside the box. I hope you can. The lives, futures, and well-being of so many autistics depend on it. So, let’s debunk some misconceptions right now.

Apraxia can affect any motor or muscle action. This is why sign language, handwriting, two-handed typing, and various augmentative and alternative communication systems aren’t viable options. It’s why we score low on IQ tests or any tests trying to measure our intellectual competence. These tests’ responses require motor responses, and ours aren’t reliable or as accurate as we intend. If our eyes can’t follow, if we can’t consistently point to or grab the intended picture/card, we are then scored as lacking receptive understanding. We are completely underestimated. We can do grade-level work and beyond. We have critical thinking skills. We can process, synthesize, and generalize information. We can problem-solve. We can think with our brains in all the same ways people without autism can—and in many other, often exceptional, ways as well.

MISCONCEPTION 2: We don’t feel

Not only are we soaking up all cognitive input, but we are soaking up emotional input as well. We are deep feeling and emotionally intuitive individuals. Our facial expressions and body language don’t always accurately reflect our own emotional states. But we can read the facial expressions and body language very well: absolutely no flash card practice is needed!

It is a misconception that we are emotionally clueless, discon-

Exceptional Needs Today | Issue 9 | 31

EXCEPTIONAL ADVOCATE

nected, or neutral. In fact, our heightened emotional awareness is often what drives our hard-to-control bodies to act in ways we wish they wouldn’t.

Many ways our bodies act or react are not at all intentional. This includes sounds, noises, verbal scripts, movements, actions, and positioning. This also includes eruptions, escalations, and all reactions that earn us the label of “behavior problem.” These are the same reactions that get us restrained, segregated and mistreated. In truth, our bodies go into primitive survival mode.

Fight or flight is beyond the control of our higher-level thinking.

We cannot rein our bodies in, and we are mortified.

MISCONCEPTION 3: We are not social

Not only are we cognitively and emotionally savvy, we are also extremely social beings. Yet another misconception: that we prefer to be alone, that we shun or are indifferent to social relationships. Our social interactions may look different than what is expected or considered the norm, but they are no less enjoyable to us. Again, what happens on the outside betrays what’s going on inside. We need support to participate socially, and when others mistakenly judge that we are not interested, we don’t get that support or the interaction.

MISCONCEPTION 4: We are less than

This is who we are. We are neurodiverse, which means our brains operate differently—NOT that we want to be cured. Of course, we want our apraxia to improve, but what human on the planet doesn’t have an area that needs some attention? We are not inferior, less than, or to be pitied. Our needs are not special needs—they are human needs. So, like any other human being, we have hopes, dreams, fears, ideas, and opinions. We want to pursue our goals and have the opportunity to fulfill our potential to the best of our ability. Like anyone else, we want to live our best life. Just because it’s an autistic one doesn’t mean it’s not worthwhile.

Like I said earlier, stretching beyond preconceived notions is a difficult ask. But a more difficult ask is for nonspeaking autistics to endure a life of denied human rights and unfulfilled potential.

You don’t have to journey to Loch Ness in Scotland or find the television for the fake (?) moon landing. You just have to open your mind and heart and listen to a nonspeaker. We are here in plain sight. We are the evidence.

Noah Seback is a nonspeaking autistic who has gained the ability to communicate effectively through spelling on a letterboard or keyboard with the support of a communication regulation partner. He is a rising self-advocate who is passionate about promoting communication rights for fellow autistics who don’t speak or speak minimally or unreliably.

His lived experience of 16 years as a nonspeaker without a voice has provided him with the ultimate training and expertise.

Website: thisismenoah.com

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32 | Exceptional Needs Today | Issue 9

EXCEPTIONAL EDUCATION

Courageous Conversations in Education After a Pandemic

By Chris Abildgaard, EdD, LPC, NCSP, NCC AS A SOCIETY, AS PARTS OF VARIOUS SYSTEMS WITHIN THE HOME, SCHOOL, AND COMMUNITY, WE CONTINUE TO DO THE BEST WE CAN TO KEEP OUR HEADS ABOVE WATER. WE ARE ENTERING A TIME OF LEARNING TO LIVE AGAIN, OVERCOMING THE SHADOW OF COVID-19 AND THE IMPENDING FACTORS IT STILL MAY BRING. As I, a professional (and parent), walk between understanding where families, individuals, students, clients, and systems of education are at this point, we have to acknowledge this has been, by far, the toughest year in education and mental health services to date. We continue to see growing waitlists in our community-based mental health facilities, we struggle with referring people out to the appropriate resources (due to an overall lack of them), and we are seeing an increasing number of individuals (both neurotypical and those with various neurodevelopmental/neurodiverse learning styles) inundate our hospitals and emergency rooms (ERs) due to intense mental health needs. We are seeing more and more young children, between the ages of

three to four years, come into public schools with no socialization experience, poor problem-solving and coping skills, and an overabundance of parents looking for a referral to special education because they know “something is just not right.”

And yet, now, as students are back in school, unmasked and getting back to a semi-normal way of how they used to learn, we are not stopping to look at what we have discovered over the past two years. We are not acknowledging that the pandemic will have a four to six-year impact on our students or that we must adjust. Instead, we have to learn and acknowledge what we have seen as a result of service delivery mod-

Exceptional Needs Today | Issue 9 | 33

EXCEPTIONAL EDUCATION

els, access to educational resources and learning, and where those gaps in our system lie.

As we begin to think about the end of yet another school year, our system needs to be given permission to reflect and identify aspects that have worked and any continued barriers to a student’s success. We as a society owe it to students to engage in courageous conversations around educational inequities, implicit bias, and even ways that traditional educational frameworks, such as inclusion, may have changed or should be looked at differently as a result of all we have learned and endured over the past 24-plus months. When we sit down to have “courageous conversations,” we must intend to discuss challenging current practices and fostering improvement and growth through conversation, listening to and acting on feedback, and providing feedback that will improve student achievement and well-being. During these conversations, whether in the context of performance appraisal, mentoring, or coaching, individuals are encouraged to express their views openly and truthfully rather than defensively or to lay blame.

A cornerstone of a courageous conversation is all participants’ openness to learn.

So, what have we learned in the past two years, and how can we start having conversations about all we have seen?

COVID-19 (C-19) has caused a global pandemic. We saw and came to live with the realization that curbing the spread relied on some very specific measures. For example, aspects of a temporary normal included social distancing, shielding, and lockdown. We are now learning that these policies may be associated with adverse secondary effects, for example, loss of usual activities (e.g., education/occupation, social events), isolation and loneliness, and disruption to service provision (White et al., 2020). It is essential to understand how these secondary effects of C-19, lockdown, and social distancing impact particular populations (e.g., specific age groups, clinical and educational populations).

When thinking about our students with an autism spectrum disorder (ASD) or other neurodevelopmental disabilities, we have seen that autistic individuals are conceivably at heightened risk of experiencing difficulties coping with the pandemic and resultant measures (Pellicano & Stears, 2020). Loss of usual routines and activities proved to have been anxiety-provoking (Kerns et al., 2014). Autistic students struggle with abrupt changes or discontinuation of one’s course of service delivery and transition programing due to school and college closures. Many autistic individuals require support (e.g., from family or behavioral services), yet the services that typically offer that support may have paused temporarily; other practical obstacles may also have impeded input (e.g., lack of transport, need for shielding, other family members contracting C-19) (White et al., 2020).

Amid the chaos, there were some positive signs of thinking outside the box. Here in the United States, most states made impressive efforts to continue services for those who need them, often by taking education and therapeutic support online. Some autistic people have welcomed the new mode of delivery, with education, therapy, and other services delivered into their own homes through video technologies.

Yet, for others, engaging in education, activities, and social/ emotional interventions from home (for those who could access those services); this notion of coping with unpredictable changes in routine, alongside indefinite uncertainty and less support when accessing education online, might exacerbate inequalities and poor mental health of our students with ASD and other neurodiverse learners (Ameis et al., 2020).

Let’s take a step back and talk about how students of various socioeconomic backgrounds may acquire the technology to keep pace with other peers from neighboring school districts.

The idea of technology was key and benefited many over the past few years. However, we also have clear indications that this problem with equity of access impacted not just students with various neurodevelopmental disorders but those students from a lower socioeconomic status and within families of ethnic minorities. Race, disability, and socioeconomic status played a role in how services were delivered during those

34 | Exceptional Needs Today | Issue 9

EXCEPTIONAL EDUCATION

critical and isolating months of C-19, and having conversations about how to address improving equity of access better should begin to be had, not just by our urban school districts and community mental health providers, but by us all.

So, where do we start now that we have identified this problem of practice? We start by talking and acknowledging that, as a society, we were not prepared to deliver educational and mental health services to all equitably. When reflecting on the current state of education and mental health services in this country, I am struck by one of the seven core principles author Susan Scott talked about in her book, Fierce Conversation: “Take responsibility for your emotional wake: For a leader, there is no trivial comment. The conversation is not about the relationship; the conversation is the relationship. Learning to deliver the message without the load allows you to speak with clarity, conviction, and compassion”.

As educators and mental health providers, let’s think for a second about what that means and how this can be a turning point in our discussions about how to make our systems even better. When talking to families, students, or other team members, one of the core tenets of education and solid educational programming is trust. If we cannot trust those we are working with, then we can’t have conversations that need to be had. It is okay to be passionate, to be invested, and yes, even to be emotional. However, we must be ready and willing

We start by talking and acknowledging that, as a society, we were not prepared to deliver educational and mental health services to all in an equitable way. to hear the stories and perspectives of those we interact with.

If we in education can allow ourselves to listen to the stories of our students, their families, and our colleagues, then we may be one small step closer to addressing educational inequities and barriers that have impacted all students over the years.

It’s up to us to make time for these conversations, address our emotions and passions, and use both to drive relationships, build trust, and create meaningful change.

Exceptional Needs Today | Issue 9 | 35

EXCEPTIONAL EDUCATION

References Ameis, S. H., Lai, M., Mulsant, B. H., & Szatmari, P. (2020) Coping, fostering resilience, and driving care innovation for autistic people and their families during the COVID-19 pandemic and beyond. Molecular Autism, 11(1), 1-9. https://doi.org/10.1186/s13229-020-00365-y Kerns, C. M., Kendall, P. C., Berry, L., Souders, M. C., Franklin, M. E., Schultz, R. T., Miller, J., & Herrington, J. (2014). Traditional and atypical presentations of anxiety in youth with autism spectrum disorder.

Journal of Autism and Developmental Disorders, 44(11), 2851–2861. https://doi.org/10.1007/s10803-014-2141-7

Pellicano, E., & Stears, M. (2020). The hidden inequalities of COVID-19.

Autism, 24(6) 1309–1310. https://doi.org/10.1177/1362361320927590 Scott, S. (2002). “The seven principles of fierce conversations.®” Fierce Conversations http://www.fierceinc.com/html/book_principles.html.

White, L. C., Law, J. K., Daniels, A. M., Toroney, J., Vernoia, B.,Xiao, S., The SPARK Consortium, Feliciano, P., & Chung, W. K.(2020).

Brief report: Impact of COVID-19 on individuals with ASD and their caregivers: A perspective from the SPARK cohort. Journal of Autism and Developmental Disorders. https://link.springer.com/ article/10.1007/s10803-020-04816-6

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/

LIFE AFTER LOCKDOWN A powerful resource for people with autism, as well as those who are neurotypical, in dealing with the stress and anxiety of social situations, going back into the community, and returning to school and work. https://www.amazon.com/dp/B0B37KWZNC/ref=tmm_pap_ https://www.amazon.com/dp/1956110038 swatch_0?_encoding=UTF8&qid=1654896233&sr=8-1

Contributions from 40 well-known experts and autistic individuals including: Dr. Temple Grandin Dr. Tony Attwood Dr. Stephen Shore

Dr. Kerry Magro Dr. JÂcqûeline Fede Dr. Amy Laurent

36 | Exceptional Needs Today | Issue 9

Dr. Peter Vermeulen Larry Biassonnette Elizabeth Sautter

Lillian Vasquez Kelly Londenberg Sandy & David Petrovic

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EXCEPTIONAL ADVICE FROM

MESHELL

Understanding and Managing Sensory Outburst

By Meshell Baylor, MHS

"You cannot control when your child is going to have an emotional outburst. What you can control is your reaction."

—Heather Shumacker

HAVE YOU EVER BEEN OUT IN PUBLIC WHEN YOUR LITTLE BUNDLE OF JOY HAS A SENSORY OUTBURST? PEOPLE STARE AT YOU. FEELINGS OF ISOLATION AND JUDGMENT ARE HEAVY ON YOUR SHOULDERS AS EVERYONE WATCHES YOUR NEXT MOVE. YOU FIND YOURSELF CONDUCTING THE BEAR HUG TECHNIQUE ON THE FLOOR TO HELP YOUR CHILD SELF-REGULATE.

38 | Exceptional Needs Today | Issue 9

SENSORY STRATEGIES

As a special needs child parent, I remember being inside the Old Navy store when my son had a sensory outburst. The bright lights, the crying infant screaming in the stroller next to us, and a large number of people caused him to break down in the store. All I could do was apologize to everyone as my son clutched onto his ears and screamed and rocked back and forth on the floor. At that moment, I was so grateful to my sister, who was an instructional aide for the district. She utilized sensory coping techniques to help my son as we proceeded out of the store.

A sensory outburst is defined as an overload of five senses— hearing, sight, smell, touch, and taste. When the brain is overwhelmed by so much input, it enters a fight, flight, or freeze mode that causes a crisis reaction. For children with autism, the struggle of trying to handle input to all these senses at once can feel like an avalanche plunging down a mountain.

Things like the lighting in a department store, the sounds of people walking and talking in a crowd, or the smells of perfumes, food, and other odors in the air can be outrageous for a person trying to juggle all these elements at once.

As a parent, you must comprehend the importance of providing as much support as possible when your loved one is having a sensory outburst and not be afraid to use the strategies you believe will prove most helpful for the situation. Such techniques and coping strategies can help assist your loved one as you go out to the mall, a birthday party, or even an ice cream parlor. Raising a special needs child with sensory disorders is wonderful, but there will be times when things do not go as planned, and you will need specialized strategies to help your child in a sensory crisis. Regularly utilizing these skills will help you know what to do in more difficult or public situations, such as when you are on your first vacation with your sensory-sensitive child. The overall goal is to ensure our loved ones with exceptional needs have the utmost support and live a happy life filled with love and inclusion.

child know you are taking a field trip to the mall, doctor, or another place. Communication is key; the goal is to help them ease into the transition from their normal environments with a sense of comfort. You can create a visual board/chart with a weekly schedule, giving them visual prompts and cues on what to expect. Creating visual cues will help encourage them for the big day!

Once you arrive, let your child slowly ease into walking around. If they are not ready, give them time to stay on the outskirts with you before continuing your outing.

• Identify triggers

Identify potential triggers such as bright lights, large amounts of people, or walking into an area with various fumes and odors before a sensory outburst occurs.

Consider what may prove too much for your loved one and how much stimulation they have already handled for the day. Pay close attention to common triggers to determine how you can assist your loved one when these triggers affect them. I learned bright lights and loud noises were usual trigger factors for my son and considered how to counteract them before an outburst.

I purchased him sensory headphones and eyeglass shades. The headphones shut out loud noises, and the shades shield him from bright lights. We even created a

Here are some supportive techniques that may prove helpful:

• Allow time

If you have a child who struggles with sensory overload, prepare a time to go out in the community when it is not busy with large crowds of people. Pick specific times or dates that have a slow flow of consumers in the mall or restaurants. You want to help the child feel comfortable going out into the community while also helping them transition between different environments. In the past, I would contact the mall’s customer service department and inquire which days were typically the slowest or busiest with customers before planning a trip there.

Making the appropriate time preparations can make a huge impact in preventing an outburst.

• Prepare your child

When going into the community with a child with special needs, make sure you talk with them. Yes, let your

Exceptional Needs Today | Issue 9 | 39

SENSORY STRATEGIES

game when preparing to go into the mall, which almost always has an abundance of noise and bright lights. We would tell him it’s time for Superman to change into Clark Kent, so he had to put on the glasses to disguise his identity.

• Provide supportive items

If they are sensitive to lighting, find your loved one eyeshades to block or reduce it. If loud noises seem too much, purchase sensory headphones. Amazon has some more specialized supportive tools that help individuals with autism and sensory disorders. One of my favorite items I purchased years ago was a Thumb Buster for my son. When his sensory triggers would overwhelm him, he tended to become oral by biting. So I bought the Thumb Buster: a soft, stretchable glove that covered the thumb. This gave him something to chew and gnaw on as a distraction and self-regulation tool without hurting himself or others. If your child is a runner and you want them to be safe, there are also weighted sensory vests to provide support by giving deep compression to the body and muscles. The weighted vest also comes in handy if your child wanders in public.

The vest serves as an obstacle by preventing them from moving at top speeds.

sistive care to a special needs individual if the guardian needs to attend routine appointments, go to the store, or conduct business. A qualified respite worker provides in-home and community care for your child if you are not ready for the community adventure.

There are 21 regional centers within the State of California, and Department of Developmental Services (DDS) is present all over the state. These two entities provide specialized services for individuals with disabilities. Check your local DDS or regional center regarding these services. Raising a special needs child with sensory disorders is only the beginning of learning more about who they are and what makes them unique. Do not be afraid to venture into the unknown with them. Our goal is to see them and learn what makes them comfortable and feel uncomfortable. Together, we can leave our comfort zone to help them find their place of peace, and in doing these things, we help them live a life of love, happiness, and inclusion.

Resources

The Department of Developmental Services (DDS) provides a directory of services for individuals with developmental and physical disabilities. More information can be found at http://www.dds.ca.gov.

• Bring a favorite home item along

If your child has a teddy bear or a coloring book or any item that makes them feel happy, bring it with them out into the community. The goal is to help ease them into becoming comfortable making trips to various places.

We understand this will take some time, so whether it’s a water bottle or a baby doll that helps them with walking into a store or going on their doctor visit, bring it along. Our goal is to encourage them at home as well as in the community.

• Provide a good, old-fashioned hug

If you cannot afford specialized items for your child, that is okay. However, if you are out in public and your child is having an outburst, a strong, close hug can provide deep compression to the body, which can be soothing if a child has a sensory overload. I worked closely with a home behavior therapist who informed me that a good old-fashioned hug with a bit of squeeze can go a long way toward providing compression support.

• Consider respite care

Venturing into the outside world may take some time, and you and your child may not be ready. Please understand that there is no judgment, and these things take time. Taking a sensory-challenged child to the doctor or another public place can be overwhelming for the child and the parent. If you need more time, it is understandable. There are respite programs that can assist with the child at home and in the community. Respite care is a service provided by regional centers that offers as-

40 | Exceptional Needs Today | Issue 9

The overall goal is to ensure our loved ones with exceptional needs have the utmost support and live a happy life filled with love and inclusion.

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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FINANCIAL FOCUS

COVID-19’s Impact Continues for Families of Loved Ones With A Disability

By Ryan F. Platt, MBA, ChFC, ChSNC, CFBS

TRYING TO FIND HOME HEALTH AIDES, PERSONAL AIDES, AND DIRECT SUPPORT PROFESSIONALS HAS ALWAYS BEEN A CHALLENGE FOR FAMILIES WITH LOVED ONES WHO NEED CARE, AND COVID-19 HAS ONLY EXACERBATED THIS ISSUE. Before the pandemic, the turnover rate in home health was between 40 and 60 percent. Throughout 2020 and 2021, many providers saw a drop in staff members between 20 and 25 percent. More than 90 percent of providers had to decline requests for care due to staff shortages. One mom said, “I know I’m not the only one who’s just exhausted by the way things are. It just feels so insurmountable, constantly calling, calling, calling, and just getting nos, nos, nos.”

Families are looking for help but cannot find relief, even with an increase in Medicaid funding ($1.2 billion). As wages have increased in other areas of the economy, many home health professionals have found jobs that are less stressful with better pay. The federal government would need to increase funding by a substantial margin to increase home health options— something similar to the amount proposed in the Build Back Better Legislation, which is $150 billion.*

One critical first step is for families to calculate the cost of providing lifetime support for their loved one, both with government funding support and without.

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It was hard to predict a worldwide pandemic and the impact it would have on care for those with developmental disabilities; however, now that it has happened, we can begin to learn some lessons that could be used to safeguard individuals with disabilities. Through the pandemic, we have realized that government funding will not be enough to provide the necessary support. This means families will need to rely less on the government to support their loved ones and instead have a specific plan in place with enough financial resources to step in and continue care when the government stumbles.

FINANCIAL FOCUS

One critical first step is for families to calculate the cost of providing lifetime support for their loved ones, both with government funding support and without. In this way, a family can build a structural framework with the proper amount of financial resources. These calculations can be daunting because the financial need can be high, but with no target in mind, families are guaranteed to miss it. At the very least, having a target allows a family to build a plan and then begin to save towards it, which will increase the likelihood of being able to have enough to provide for the support of their loved one.

you with a sense of relief and help you choose the best way forward for your family and your loved one with a disability.

Creating a plan and then implementing it certainly will not be easy. It will take time, energy, and effort. It will also take hiring a professional special needs financial planner who can guide you down this path. Having an expert by your side will provide

*Laughlin, J. (February 9, 2022). A pandemic shortage of home health workers has left families struggling to find care. Philadelphia Inquirer/TSN/Disablityscoop. https://www.disabilityscoop. com/2022/02/09/a-pandemic-shortage-home-health-workers-leftfamilies-struggling-find-care/29696/

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.

References

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.

Website: http://www.aspecialneedsplan.com Phone: 704-326-7910 Location: 101 N. McDowell Street, Suite 120 Charlotte, NC 28204

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Exceptional Needs Today | Issue 9 | 43

ANXIETY MANAGEMENT

Creating Calm When Life Becomes Overwhelming

By Karen Kaplan I CAN NOT SAY, FOR SURE, THAT I KNOW HOW SOMEONE ON THE AUTISM SPECTRUM IS ACTUALLY FEELING EACH DAY OF THEIR LIFE, BUT I HAVE BEEN TRYING TO LEARN FOR THE PAST 40 YEARS. I HOPE YOU WILL TRUST IN MY FOLLOWING THOUGHTS, FEELINGS, AND INTROSPECTION ON THE SUBJECT.

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ANXIETY MANAGEMENT

Many children, teens, and adults I have come to know have shared with me how easily they become overwhelmed, distracted, and anxious, their thoughts racing. Some are constantly thinking, finding it hard to quiet their minds. Two of my acquaintances, who are partners and on the spectrum, have founded a Zen mediation group in Marin County, California, to help others learn meditation practices to calm their minds.

There are various meditation options to be explored—and not all meditation needs to be done while sitting.

More intensive exercise can also help recenter one’s mental focus. Parents of children with autism have confirmed my recommendation to have their child engage in a consistent exercise program (hiking up and down hills, weightlifting, biking, and swimming) filled with proprioceptive (joint compression) activities has helped them find and maintain mental calm.

I believe we teachers, therapists, and, of course, behaviorists should work hard to identify what makes their students or clients happy. Happiness brings about positive feelings, which can help stimulate and regulate positive thinking. Thinking positively helps us calm.

We could have our students or clients make a list of all the people, activities, and topics that make them happy. Then we can help them plan those happy-time activities and associations into their day. Most on the spectrum enjoy routine, so consistently planning these happy times into the day can provide a routine of happiness.

We could ask those on the spectrum to keep a gratitude journal. Perhaps making what they are grateful for VISUAL each day could help them regulate and find calm when they SEE the positives that occur in their lives. I know, for sure, that the act of writing itself (with pen and paper) is proprioceptive.

My colleagues on the spectrum inform me that after an overwhelming day of work or school, they need to isolate themselves from auditory stimulation and try to listen, process, and converse with others. I have suggested that perhaps a walk in nature could help. Taking a walk on the beach while watching and listening to the waves rolling in and out might offer an alternative to isolating in their room on technology.

Let’s teach those on the spectrum to use positive mantras when fearful or anxious thoughts occupy their minds. Here are some examples: • • • • • • • •

I give myself permission to choose not to engage I don’t have to make everything happen now I do not need to force things Life is unfolding the way it is meant to unfold I am calm; I am at peace; I can do this—my progress is just right I don’t need everything to be perfect I am doing the best I can Life is uncertain, and that’s okay

Teach them to repeat their chosen reminders 10 times, taking deep breaths each time. It can be spoken out loud or in their heads. It is felt that repeating mantras can help shift a person’s outlook.

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ANXIETY MANAGEMENT

I recommend the book Asanas for Autism and Special Needs to families and adults who want to find another way to calm themselves. Most Yin or Restore-Yoga methods can bring about calmness to those who engage. For younger children, I suggest Yoga Gorilla.

ways to improve the well-being of their child. Drumming is another proprioceptive activity for someone who loves keeping the beat: while the beat engages, the joint compression felt by the body can induce calm. Bay Area Music Therapy is a good place to look for an appropriate music therapist.

Music also has positive effects on our well-being. Playing a favorite song can bring smiles and giggles. Certain types of music affect our brain’s waves, bringing calmness. I have suggested to families that they might work with a music therapist to identify

I believe helping children, teens, and adults on the spectrum find personal calm lays a foundation for their greater success in learning, working, and engaging positively. So, let’s help others find calm.

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 and obtained her Speech Therapist and Special Education credentials in California. Karen 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 and spent 20 additional years directing private schools for those with autism and similar learning challenges. Karan founded a small non-profit, Offerings, which travels globally helping other cultures understand those with developmental challenges. For seven years, she founded and facilitated an autism lecture series and resource fair in Northern California. Karen still facilitates an Autism Awesomeness event yearly, showcasing the strengths and talents of those who live on the spectrum. She 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 NEEDS TODAY

PARENTAL SUPPORT

Paving the Way To Confident Parenting When There Are Special Needs

By Andrea Pollack, MSEd EVERY DAY, I SPEAK WITH PARENTS OF AUTISTIC CHILDREN WHO EXPRESS FEAR, CONFUSION, FRUSTRATION, AND GUILT BECAUSE THEY ARE UNSURE HOW TO BEST HELP THEIR CHILD. I REMEMBER THAT FEELING TO MY CORE BECAUSE I WAS THAT PARENT.

F

irst, let’s address why we experience these feelings.

It is not, as some suggest, that we are martyr parents trying somehow to usurp the attention from their child’s diagnosis. Many parents who experience these emotions are devoted, loving, attentive parents who want the best for their children. The confusion first arises because the parent tries to process enormous quantities of conflicting information, advice, and opinions that all claim to be the best strategies to help autistic children. They sometimes resort to time-worn discipline and punishment strategies they experienced as children, only to find those methods tend to inflame challenging moments.

often internalize shame and feel helpless and overwhelmed.

If this sounds like you or someone you know and love, I want to share some thoughts to support the journey to confident parenting.

To further compound the problem, they face judgment because of their child’s behavior, as it “proves” they are failing as parents. Secretly fearing those judgments may be valid, they

1. Your child is enough—exactly as they are right now—and so are you

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The missing ingredient to achieving confidence in parenting is usually not the strategies themselves but attention to one’s beliefs and mindset. Paying close attention to the beliefs that fuel your actions is the difference between choosing and using strategies in ways that promote growth versus using them in a way that feels scattershot and confusing. Below are six mindset shifts and beliefs that can have a positive impact on your parenting.

PARENTAL SUPPORT

Start here. This sounds spiritual and new-agey, but it is also just good practice. We don’t have to reject what is to move forward. The first time I was told this, I was offended—how dare anyone question whether I accepted my child as he was! But when I was challenged to really consider whether I would be satisfied and happy if he never progressed, I realized I was secretly battling reality. I needed to appreciate his “enoughness” right in the moment. As incongruous as it sounds, that piece of true acceptance ignited his growth and created the best foundation for progress. That acceptance also includes showing yourself some grace as you grow your own skills. I used to believe that if I was extra critical of myself, it would somehow make me learn faster. However, the more I believed in my choices, learned from my mistakes, and celebrated my victories, the faster I moved forward. The more I got out of my own way, the smoother was my road to confidence.

2. It feels better to set your child up for success than to focus on learning through the correction of mistakes

We are so conditioned to set our expectations high and promote growth through correction. While high expectations are good for long-term goals, setting a goal far above what your child can reach currently is setting them up for failure, which can cause frustration and dysregulation for both child and parent. Let’s use the example of sitting at the table for a meal. Say your child can currently sit calmly at the dinner table for only 10 minutes. If you consistently try to require them to sit each night for 30 minutes (because you think children their age should be able to do that), your child will probably become anywhere from antsy to unhinged somewhere between the 10 and 30-minute mark and dinner will end in struggle and frustration. Sometimes we deceive ourselves into believing it is the struggle that leads to growth, but the struggle can be unnecessarily stressful and detract from progress.

If, instead, you help your child slowly increase their tolerance in increments they can handle, you can often get to the same (or better) outcome and avoid much of the struggle. This isn’t about avoiding or “fixing” behavior. Critics sometimes say, “Behavior is communication. Why would you want to address a child’s behavior?” Yes, behavior is communication, but our children shouldn’t have to experience meltdowns to get their point across. Setting small goals can feel like a long and painful path, so it is tempting to aim high. However, the process of reaching each modest goal and building on each success builds self-esteem, and small successes add up to big achievements.

3. Your instincts are better than you think; how you feel when parenting matters One of the common experiences parents share with me is how uncomfortable they feel when they are executing a strategy that feels misguided. One example that still makes me cringe from when my son was young was that I was told to take away certain toys with which he played “inappropriately.”

Instead, I was to “make him” play with toys in which he had no interest in the way they were supposed to be used. Every time I took away his favorite toys, I felt terrible. Whenever I let him play inappropriately with his favorite toys, I felt terrible. When I forced him to “play” with toys he hated, I felt terrible. Because I was substituting the advice of a professional for my own maternal judgment, I felt awful no matter what I did. I am not saying the therapist’s advice was wrong or that approach might not be beneficial for some children. I am saying that when I ignored my instincts, my son and I both suffered. When I learned instead how to incorporate his favorite toys into interactive play (even if it was not “appropriate”), I could build trust and help my child grow his ability to interact while we enjoyed ourselves.

A good question to ask yourself here is, “Am I creating a connection with my child, or am I creating conflict?”

If you are creating conflict or otherwise feeling uncomfortable, take another look and try another approach.

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PARENTAL SUPPORT

4. You are the best expert on your child

Success leaves clues—learn from your successes. There is not one “right” way to parent. We come from different backgrounds, cultures, religions, geographic regions, etc. When someone makes suggestions about parenting strategies, they may not consider all those variables. In addition, you have spent time with your child since birth and likely spend more time with them than anyone who is making suggestions. As complex as your child may be, you know them best and are their lead expert. So, while an outside expert can help you discover new ways of successfully supporting your child, you must filter their advice through your personal experience with your child. In addition, you are doing things every day that are successful. Because we are so conditioned to focus on the challenges, we sometimes fail to recognize and celebrate these successes and lose the opportunity to learn from them. Why was that outing a success? Was it because you were calm? Or was it because you set your child up for success? Whatever you can determine contributed to the previous success—do more of that!

5. The future is not more important than the present

This sounds so obvious, doesn’t it? Unfortunately, I often see parents so determined to prepare their children for the future that they put an unnecessary strain on the present. I had my own dramatic example that helped me learn this lesson. When my son was four, he was attending a school that suddenly required that students wear uniforms to school. The uniform was khaki pants and a red polo shirt. At the time, my son would only wear pants that were pulled on, was freaked out by any clothing with buttons, and preferred clothes that were blue, which made every element of that uniform problematic. When I asked why this new uniform rule was being imposed, I was told that it was because the children would have to learn to wear proper clothing to hold proper jobs as adults. My son was four, nonspeaking, and prone to meltdowns. His adult job was way too far in the future for me to struggle every day with dress-

ing him in clothing he hated today. This scenario helped me see that I was caught up in so much fear of the future that it distorted my thinking in the present. The future is made up of all the small steps we make today.

6. You can handle whatever will arise

This is a belief that can take some time to embrace, but the faster you do, the easier parenting will feel, and the faster confidence will grow. Every day, I see parents approaching daily activities with fear that it will all go sideways. Our children, being the incredibly sensitive beings that they are, feel our fear and stress, which increases the likelihood that it all goes sideways. See how that works? How do you know you can handle it?

Because you always do. When you trust you can handle whatever arises, you parent from a place of curiosity, compassion, and caring rather than fear. It enables you to ask yourself empowering questions when things go wrong—what can I learn from this? What could I do differently next time? One mom first discovered this when she took her two autistic children to the park. Her initial thought was: “What if they won’t leave when it’s time?

What if they have meltdowns, and I can’t get them back in the car? What if…” She realized she usually experienced these outings with extreme stress and fear. She decided that as valid as those concerns were, she would just put them aside, have fun, and trust that whatever curveballs her children threw, she would know what to do. At the end of the afternoon, she was shocked when her children willingly left the park. Deciding to trust the outcome removed her stress from the equation and paved the way for a better outcome. Of course, not every experience will be this seamless, but removing the fear increases the odds.

You can fake it till you make it. Confidence is a process, not a destination. Confident parenting isn’t perfect parenting. Will you still make parenting mistakes? Probably. I know I still do, but I learn and move on.

After practicing law for 19 years, Andrea Pollack left that career to homeschool her autistic son when she was unable to find a school in which he could thrive. After nearly eight years of homeschooling, her son returned to school. Instead of returning to a law career, Andrea wanted to share her knowledge and experience with other parents. She pursued further education and earned a Master’s degree in Education (MSEd) to maximize her impact in supporting parents.

She started Autism Parent Solutions to educate, support, and empower parents with parent coaching to reclaim the joy of parenting as they help their autistic children reach their highest potential. https://autismparentsolutions.com/ andrea@autismparentsolutions.com

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THERAPIES AND TREATMENTS

The Pandemic and Telehealth: Thoughts on the Last Two Years

By Maria Gilmour, PhD, BCBA-D, LBA, Kelly Stafford, MA, BCBA, LBA, and Jessica McArthur, MS, BCBA, LBA COVID-19 BROUGHT SIGNIFICANT CHANGES TO OUR LIVES. THE PANDEMIC DISRUPTED MOST OF OUR DAILY ROUTINES. SCHOOL, WORK, FAMILY EVENTS, HEALTH-RELATED APPOINTMENTS, AND SOCIAL INTERACTIONS WERE ALL, TO SOME DEGREE, SUDDENLY CONDUCTED VIRTUALLY.

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THERAPIES AND TREATMENTS

This transition was abrupt; within weeks, much of the world’s populace was expected to alter long-established conventions without preparation. Virtual appointments and social time were not entirely new phenomena, but many of us struggled to adapt.

It is probably fair to say different families, clinicians, and agencies (and even different clinicians in the same office!) experienced highly varying degrees of success and failure when suddenly and unexpectedly confronted with integrating telehealth into their daily practice. Some people may now harbor negative perceptions about telehealth, while others adamantly support it. This is likely a good point to reflect upon successes and identify areas for improvement. While a full review of telehealth services is beyond the scope of this article, this paper seeks to increase the understanding of the limitations, benefits, and potential future of telehealth services in the field of Applied Behavior Analysis (ABA).

Telehealth can provide immediate access to services

In the field of ABA, virtual treatment methods, also known as telehealth, have existed for nearly 20 years. There is a significant amount of research to support the idea that services delivered via telehealth can be as effective as in-person services (Ellison et al., 2021). Over the past two years, ABA methods have been used for a variety of purposes with individuals diagnosed with autism spectrum disorder (ASD). Clinicians used virtual methods to perform interventions, assess individuals, foster skill development, and provide caregiver support (CASP, 2021).

During the first two years of the pandemic, telehealth afforded a means for some children and families to receive direct services. If direct services through telehealth were not available or appropri-

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ate for the child or family, telehealth provided an avenue for an initial assessment or access to resources while waiting for in-person services. Over time, therapists and families became more familiar with the ins and outs of virtual practice. Moreover, all parties continued to research the topic. As a result, the quantity and quality of resources available have increased substantially.

One of the greatest benefits telehealth can offer is immediate access to services. Delayed access to assessment and resources can be detrimental to a child’s development and add additional stress to caregivers and families. Access to services can be challenging for families in the best of times (that is, before the pandemic).

Families can be on waitlists for years before being assessed or provided with any resources. When these families are finally able to access resources, they often must travel many miles, take time off work, or find childcare to make therapy a reality.

Telehealth can help negotiate these barriers. Children and families can obtain support much sooner. Parents may not have to reorganize their day or take time off from work. Telehealth also allows families to receive services during high-stress times, including inclement weather days, sick days, or when moving (CASP, 2021). With telehealth, families would ideally receive quality care with reduced wait time. In addition, services are not necessarily canceled due to situations beyond the caretaker’s control.

Telehealth also increases the ability to collaborate across multiple disciplines. Many children have a team of service providers working with the family. Meeting in person with the entire multidisciplinary team can be challenging. Telehealth makes meeting and collaborating across providers more accessible by eliminating scheduling constraints.

THERAPIES AND TREATMENTS

Limitations to telehealth services

While telehealth should be a component of every family’s treatment plan, it has a few constraints we should be aware of. A key drawback is the lack of in-person support. Many families pioneered the transition in their ABA services to telehealth in 2020 only because of the pandemic and social distancing measures.

This development suddenly limited face-to-face interactions and occurred without the benefit of a transitional period for all parties to acclimatize to the situation. It abruptly limited or even totally eliminated in-person support to which families were accustomed.

Some parents reported feelings of isolation in not only their children with exceptionalities but also the adult members of the household. Ideally, families and their therapists would be afforded an opportunity to phase in telehealth over time.

Other limitations to telehealth can exist as well. For some individuals, in-person visits may simply be more appropriate due to health conditions (CASP, 2021). The technological requirements of telehealth may pose a limitation for some. Limited access to, and the cost of, hardware and software, much less the internet itself, affects a family’s ability to receive telehealth services. Slow internet speeds, power outages, broken devices, managing multiple screens while screen sharing in sessions, and software challenges are all potential obstacles.

Clinicians themselves also experience hardships when working with clients via telehealth. Even during in-person services, maintaining focus and motivation can be challenging. Under the best of circumstances, a clinician must continually work (really hard) to develop methods to maintain motivation and manage the environment. In telehealth, this is even more challenging, especially with younger children.

Next steps for ABA therapy in the future

Given the high demand for ABA intervention across a variety of populations and regions, telehealth will continue to become a larger part of therapy. So, what are the next steps?

Caregivers must have clear expectations. As a caregiver, you need to know what to expect from telehealth and what outcomes are feasible. The caregiver needs to see that the services are working.

The caregiver must also know what is expected of them to make therapy successful. ABA is not intended as expensive babysitting.

An often-overlooked goal of ABA is to serve as a tool for the parent to develop their own skills and help their child generalize skills across environments. It aims to accelerate outcomes. Telehealth is yet another tool to help impart these skills. The goals of ABA do not change with differing delivery models.

There is going to be more technology in ABA in the future. More and more individuals are diagnosed with special needs each day.

The rate of diagnoses vastly exceeds the number of therapists who graduate from school and apprentice to a level of competence. By sheer necessity, technological aids must become an ever-greater component of ABA in the future.

As stated above, telehealth practice will continue to increase across disciplines. As we have seen with the pandemic, therapists and caregivers gain more experience, and more data becomes available for identifying tactics that are most effective in telehealth. With access to more outcome data across disciplines, telehealth will show better outcomes.

References Council of Autism Service Providers. (2021). Practice parameters for telehealth-implementation of applied behavior analysis: Second edition. Wakefield, MA. https://casproviders1.wpengine.com/wpcontent/uploads/2021/12/Final-Copy-Practice-Parameters-TelehealthABA-AMA-References-12.2.2199.pdf Ellison, K.S., Guidry, J., Picou, P., Adenuga, P., & Davis III, T.T. (2021).

Telehealth and autism prior to and in the age of COVID-19: A systematic and critical review of the last decade. Clinical Child and Family Psychology Review, 24, 599-630. https://doi.org/10.1007/ s10567-021-00358-0

Maria F. Gilmour, PhD, BCBA-D, is a behavior analyst with over two and a half decades of experience working in the field of applied behavior analysis and developmental disabilities. Dr. Gilmour is the Chief Clinical Officer of Gemiini Systems, a video modeling company, and President of Wynne Solutions, an ABA agency focusing on providing caregiver education and direct intervention services via telehealth. Dr. Gilmour collaborates with multi-disciplinary team members across the globe to provide clinical supports in a variety of settings while continuing to pursue research in video modeling.

Websites: www.wynnesolutions.com, www.gemiini.org Kelly Stafford is a Board-Certified Behavior Analyst and Licensed Behavior Analyst who has worked with children with developmental disabilities for the past 10 years. She has a master’s degree in Applied Behavior Analysis with emphases in autism and has experience working in school settings with children of all ages, as well as utilizing telehealth to provide behavior analytic-based services with Wynne Solutions.

Jessica McArthur is a Board-Certified Behavior Analyst with Wynne Solutions and has been working professionally in the field for the past seven years. She is fluent in Spanish and earned a master’s degree in special education from Portland State University.

Exceptional Needs Today | Issue 9 | 53

Kate Makes it Great!

PARENTAL SUPPORT

Creating a Positive Approach To Toileting When There Are Special Needs

By Kate C. Wilde

HAPPY JULY, EVERYONE! I AM SO HAPPY TO BE BACK WRITING TO EACH OF YOU AND ANSWERING YOUR QUESTIONS! THIS ISSUE’S ARTICLE IS DEDICATED TO ALL THINGS POOP! YES, YOU READ THAT CORRECTLY! POOP! I’M NOT SURE WHY IT IS ALSO CALLED “NUMBER TWO,” BECAUSE WHEN THERE IS AN ISSUE WITH IT, IT SURE CAN TAKE CENTER STAGE! OUR CHILDREN CAN OFTEN EXPERIENCE CONSTIPATION AND/OR DIARRHEA, MAKING POOPING AN UNCOMFORTABLE, CHALLENGING EXPERIENCE.

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PARENTAL SUPPORT

Pooping is an intense sensory experience for all of us, but it is so much more so for our loved ones on the spectrum due to their super-sensitive sensory system. This can make all the toileting hygiene tasks around pooping extra challenging. Taking this understanding on board will help us take a compassionate and more successful approach to helping our children not only poop with ease but actually do it in the toilet.

The first place to help with this would be to adopt a “Poop is Wonderful” mindset. Why? Because: 1.

2.

Poop is wonderful in all its smelly, solid, or not-so-solid forms It will change the way your child or adult relates to and interacts with their poop—and change how we educate them to interact and relate to their poop

Poop is something to be whole-heartedly welcomed with joy.

Joy, as in keeping a sincere smile on your face instead of the customary crinkled nose, down-turned lips of displeasure, and “yuckiness.” That “I smell poop” face has been passed down from generation to generation. But why? All of you have most likely experienced the discomfort of constipation at some point in your life, and then, after a few days of not being able to poop, the most glorious, superb moment of relief when you manage it. You know what I am talking about. Didn’t you secretly want to go out and tell someone of your amazing

feat and celebrate? That is the kind of mindset we want: that poop is a cause for celebration. We want our child or adult’s poop to see the light of day because if it doesn’t, we have a far bigger problem than just cleaning it up.

Let’s break the cycle of passing on shame or “yuckiness” around pooping to our children, no matter their age. If we decide to truly like, embrace, and even enjoy the fact that poop is out of the body rather than stuck inside, our children or adults will be less likely to: • • • • • •

Withhold it Want to sneak off and poop in the corner of the house where no one is Be controlling around it Move away from learning to poop in the toilet Move away from hygienically wiping themselves afterward Feel judged for a perfectly wonderful and healthy bodily function

With that in mind, I will share a couple of great questions that were sent to me about pooping.

Priti from California asks, “I have a question. Barry goes to the bathroom and lately tries to clean his butt with his hands and then cleans his hands either on his shirt or in the toilet bowl water. He never did this before. I am sure he is trying to be independent in wiping, but does not use the toilet paper. I can take a lot in, but I just have difficulty dealing with poop all over his shirt.

It’s too much for me to take. Please help!”

Thank you so much for your question! I love the thought you have about him wanting to be independent—it is quite insightful. With that in mind, I suggest you have a chat with him and celebrate his efforts; congratulate him for wanting to clean himself. It is a very good sign that he is attempting to do so.

Seeing it as a milestone towards poop independence that is also clean may help you view it differently and “not too much for you,” as you shared in your question. Below are some practical suggestions to help him: •

•

•

Get some extra fun toilet paper. There are novelty toilet rolls you can get. I gifted my dad with a crossword toilet roll one Christmas, and he loved it. Do an internet search—you can get toilet paper with jokes on it, Disney characters, and more. Find one you think Barry would find interesting. This may help him not forget the toilet paper part of wiping.

Around the time you know your son usually poops, fill up the sinks in your bathroom with soapy, bubbly water. While demonstrating the process, tell him that if he gets poop on his hands to wash them thoroughly in the bubbly water instead of the toilet.

You can model good handwashing practice by washing your own hands in a fun way when you have just used the bathroom.

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PARENTAL SUPPORT

• • •

•

If you happen to see him go into the bathroom, remind him to wipe and wash as he is going in.

If he starts to clean his hands in the sink, even if he does not get it all off, celebrate him in a fun way.

Once he starts cleaning his hands in the sink, get a special hand towel featuring pictures of something he likes.

For example, if he likes sharks, get one with shark images. If he likes numbers, get one with numbers on it.

Introduce him to wiping his hands on the towel after he has cleaned his hands in the sink.

Don’t get too caught up in which order he attempts these steps. Focus on celebrating any effort toward any step.

2.

I love that you are trying to make the toilet more fun.

This is great and really works for a lot of children, but not all. Pooping can be a big sensory experience, so adding our loud enthusiasm on top may be too much.

She may want to be left alone to poop in private, and the only way to achieve that is to go off by herself to a room you are not in. I worked with a lovely girl who was clearly holding her poop and not responding to my lively, enthusiastic attempts at making the toilet fun. Seeing this, I changed tactics and lowered my voice and energy.

I told her she could take all the time she needed, and I would leave her alone and give her some privacy. I then left the bathroom. It took her seven minutes before she could sit on the toilet and 15 minutes to finish pooping.

It obviously took time and concentration on her part and was easier for her when I was not around. Maybe this is the same for your daughter.

3.

Squatting to poop is a very natural and healthy way to poop. You can get what is called a “squatty potty” that you can put on top of your toilet. This tool makes it so she can use the toilet and squat at the same time, which will probably make the toilet much more attractive to her. If you decide to try this, show it to her and model its use at a time when she does not need to poop. She will have more capacity to take it in, and it will give her a chance to practice using it without the added sensory experience of needing to poop.

Let me know how it goes, Priti!

Tony from the United Kingdom writes, “My daughter seems to be in distress when she needs to poop—she becomes agitated and paces a lot, then goes off by herself to poop alone somewhere in the house that is not the toilet. She will often squat to poop. She does pee in the toilet and does not wear nappies, but no matter how fun I have made the toilet, she just will not sit on it to poop.

How do I help her?

This is much more common than you might think. I have worked with many children who do this. Although I do not know your daughter specifically, here are the top three things I would try: 1.

Ask your doctor to test her for allergies. Her pacing and agitation could mean she has some gut issues that make pooping quite uncomfortable. If she is already a picky eater, this would be more likely for her. Helping her with any gut issues may ease her pooping discomfort considerably.

For more toileting tips, check out my article in Issue Two, March 2021 of Exceptional Needs Today, and the second edition of my book, Autistic Logistics: A Parent’s Guide to Tackling Bedtime, Toilet Training, Meltdowns, Hitting, and Other Everyday Challenges.

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

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EXCEPTIONAL BOOKS

Priestess of the Lost Colony

By Brandon Pilcher Priestess of the Lost Colony is a beautiful mesh of magical realism and historical adventure. This debut novel by author-illustrator Brandon Pilcher features the headstrong Egyptian princess, Itaweret, her brother Bek, and a rescue mission that seems like an impossibility. When her beloved Per-Pehu, an Egyptian colony on the coast of Greece, falls to the tyrannical Scylax of Mycenae after she refuses his marriage offer, Itaweret and Bek embark on a mission to save their enslaved people and depose Scylax.

Along the way, they encounter numerous perils, make friends, and overcome foes, including fearsome beasts based on mythological figures and borne of the author’s prodigious imagination. Some are sent by Scylax’s divine benefactor, the wrathful Athena. But Itawaret, guided by her own goddess, Mut, is determined to save what remains of her people, all while learning her heart’s desires and realizing her deeper purpose.

Set in ancient Greece 3,500 years ago, Priestess of the Lost Colony blends magical realism with alternate history to create a high adventure filled with discoveries, both internal and external, all topped off with a romantic after-tone.

“I had a blast reconstructing and juxtaposing the different cultures of the setting,” Brandon says. “The story is inspired by ancient Greek legends of Egyptians settling upon their shores, such as a story Herodotus relates of Egyptian priestesses (or black doves) founding the oracle in Dodona.

I thought it would make for a fun alternate-history premise.” Brandon adds, “Writing and publishing a novel has been my lifelong goal. It took a couple of years to work on, with a lot of work and perseverance going into the project. It helped that I had a basic outline of the plot as well as the setting to work with, although there were some areas toward the end where I had to wing it.”

Open Books Press http://www.openbookspress.com/Priestess Amazon https://www.amazon.com/gp/product/194179985X/?tag=penandpublishllc-20 Brandon Pilcher is a 32-year-old autistic man who has always found his creative sweet spot and sense of fulfillment in illustrating and writing. A prodigious artist with a preference for ancient historical themes, his work has been commissioned by galleries, private fans, and most recently, the oversize book publishing powerhouse Dorling Kindersley (DK). He also contributed to the cover illustration for Priestess of the Lost Colony.

Brandon is the author of two published short story collections, Dinosaurs & Dames: A Selection of Short Stories and Beasts & Beauties: A Second Selection of Short Stories, available on Amazon, along with several individual stories on Kindle. His work and illustrations can be seen on https://www. brandonpilchersart.com Priestess of the Lost Colony is available in bookstores and online.

Exceptional Needs Today | Issue 9 | 57 ADVERTISEMENT

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MY WORD

Finding Balance in a Fluid Life When There Are Special Needs

By Melissa D. Dean, MA, EdS JUST BEFORE NOON, I PUSHED TESS’ WHEELCHAIR WITH ITS TWO BROKEN HANDLES THROUGH THE EMERGENCY DEPARTMENT DOORS, WITH MY BROWN PAISLEY BACKPACK STRAPPED TO MY BACK FILLED WITH THE WORK I HAD INTENDED TO DO THAT AFTERNOON, A BANANA STUFFED STRATEGICALLY INTO THE FRONT POUCH SO IT WOULDN’T BRUISE BEFORE I REMEMBERED TO EAT IT, AND A MOVIE THEATER POPCORN BOWL PERCHED ON MY DAUGHTER’S LAP TO CATCH ANY LINGERING VOMIT. When the triage nurse exclaimed, “I LOVE your shirt! I NEED that shirt!” I had to look down to remember what I had even put on a few hours earlier when I prepared for what I thought we would do today. I smiled when I saw the mint green hoodie imprinted with the “Life is Good” stick figure lady holding

her yoga pose and the single word “Balance” underneath her, thinking how much I needed it too.

I try to fill my life with reminders like that shirt—a plaque on my kitchen window cries, “You Can;” a print on my bookshelf Exceptional Needs Today | Issue 9 | 59

MY WORD

Foundation

Without a solid foundation, balance is nearly impossible. How, then, can I find balance in a constantly moving and changing fluid life? I certainly could not hold a Pilates balance pose on water! The fluidity in my life, then, must remain external. I cannot control all my circumstances or even all my emotions, but I can control the foundation on which I choose to stand. For me, faith and family comprise the immovable foundation of my life. Faith first—because to me, there is no firmer foundation on which to stand than an immutable God who loves me unconditionally and supplies the very breath that gives me life. Family second—because the people God has entrusted to me as a parent will always be my greatest privilege and responsibility.

Strength

proclaims, “Always We Begin Again;” a magnet on my fridge encourages me to “Cultivate What Matters;” and my coffee mugs exclaim, “You’re Doing Great” and “Grace Over Guilt.”

It’s just too easy to forget some days.

The concept of balance in life is not novel or new, but my understanding has deepened greatly over the past year as I began practicing Pilates. Pilates has several core principles, but balance is the one that has resonated most deeply with me. As a single mom homeschooling three kids with multiple special educational needs and disabilities, my life is incredibly fluid. I have routines in place in every possible area, simply to provide some structure to a life that changes day-by-day and even minute-by-minute, according to which variation of the wide assortment of possible needs and challenges decides to present itself on a given day.

In a fluid life, balance is challenging but also essential. It isn’t something that can be achieved or mastered but rather practiced and fostered. The balance exercises in my Pilates workouts are demanding every time I encounter them, but they all require similar elements I have found equally applicable to my unpredictable life as a parent and teacher to exceptional children.

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To hold my balance in a Pilates exercise, I must have strong core, leg, and arm muscles. I must be able to bear and distribute my own weight and sustain the effort over time.

Building strength takes time and comprises numerous little decisions I make each day about what and when to eat, how much to sleep, and whether to keep going when my muscles burn or quiver and beg me to quit.

The gradual process of gaining strength builds my stamina, protects me from injury, and enables me to do what I previously could not, including holding my balance.

Focus

When I hit a balance series in a Pilates workout, my eyes immediately go to the Grogu (Baby Yoda) figurine strategically placed to the side of my television screen. I have several Grogus scattered throughout my home simply because they make me smile, but this particular one has his eyes closed and his hand extended as he calls on “the force.” He is the perfect focal point when Robin, my online Pilates instructor, instructs me to find a spot to look, knowing that even veering eyes can throw me off balance.

Resilience

Inevitably, despite keeping my feet grounded, building strength, and staying focused, I will lose my balance. Some days I cannot seem to find it at all. Whether it is a little teeter or a big stumble, a significant part of practicing and fostering balance is learning to recalibrate. Sometimes that is sensing the wobble and mustering all the strength and focus I can to hold the pose. Often, it is losing the pose altogether, laughing at myself, taking a deep breath, and beginning again. As Ger-

MY WORD

man philosopher Friedrich Nietzsche once said, “Out of life’s school of war—what doesn’t kill me, makes me stronger.”

Just like in Pilates, balance is a key principle in my everyday life.

Every choice I make for myself and my children either fosters or undermines our individual and collective balance. Knowing that provides a filter through which to make decisions about how to spend our time, energy, and money. With the myriad of needs that accompany Down syndrome, autism, cerebral palsy, functional blindness, attention-deficit/hyperactivity disorder (ADHD), and the other challenges my children face, we could spend all day every day on therapies, skill-building, academics, daily living skills, or exercise and nutrition. Conversely, we could use all those challenges as excuses to avoid tasks or goals that seem out of reach or even fun activities that re-

quire a lot of effort. I have been guilty of both extremes in this 13-plus-year journey as a mom to children with special needs.

The best days, months, and years aren’t predictable or easy or even all positive, but they are the ones that have balance—just enough challenge and trial to grow, just enough repetition and practice to remember, just enough fun and laughter to smile, and just enough health and restoration to breathe.

And if you end up in the Emergency Department and the work you threw into a backpack doesn’t get touched and the banana you packed as you raced out the door ends up getting bruised in transit, feel around for the foundation under your feet, draw on the strength you’ve built, take a deep breath, focus, and begin again.

Melissa Dean is a homeschool mom to eight children who range from ages nine to twenty-six. Her youngest four children have exceptional needs. She is an AP English teacher at Pennsylvania Homeschoolers and a PhD candidate in special education. She is passionate about helping children with special needs maximize their potential. She lives in Chesapeake, VA, with five of her children, two dogs, and a bearded dragon. She loves books, plants, and complicated coffee drinks; enjoys playing strategy games and blogs occasionally at https://crosseyedliving. wordpress.com/.

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Exceptional Needs Today | Issue 9 | 61

PARENTAL SUPPORT

Autism Doesn’t End at 18— Now What?

By Sanjukta B. Mukherji, BCBA, LBA THE MOMENTS PASS LIKE A SLIDESHOW IN FRONT OF YOUR EYES…SNAPSHOTS OF YEARS IN SCHOOL, MYRIAD THERAPIES, AND THE FACES OF SOME TRUE MIRACLE WORKERS PLAY LIKE A SHOWREEL. YOU WONDER HOW TIME MELTED AWAY, HOW YOUR CHILD GREW INTO A YOUNG ADULT READY TO STEP OUT INTO THE WORLD.

Here you are—happy, proud, terrified, apprehensive, and utterly lost! Now what?

Indeed, here starts the main journey for so many of our loved ones, and with them, us caregivers. The safety net of school ends typically when a special needs individual is between 18 and 22 years of age, with therapies stopping even sooner. This is a period of momentous life changes. The school routine the individual (and family) has known for so long will shift, and the people who formed such a critical part of

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our daily lives will bid us goodbye. Insurance no longer covers services (if one can at all find a suitable one for young adults), and oftentimes the caregiver is unsure how prepared the autistic individual is to be placed in the workplace, live independently, and advocate for themselves. At once, caregivers are faced with long-term decisions that will last the next 60 years or so on a reasonable estimate—finances, ap-

PARENTAL SUPPORT

propriate vocational or employment opportunities, residential services, and overall caregiving services. It is an overwhelming experience, to say the least!

Transition planning is intended to help structure this process. In order to begin planning, we will have to examine some key areas: What are the essential components of a transition plan? What courses or training should be focused on, and what areas would the family need to plan long term?

From the filter of a parent of a nonspeaking adult and a professional working with adults of all abilities, I will attempt to share some of my thoughts on this. It is a continually evolving learning process with a vast number of intricacies; hence, I have tried to provide a broad overview of some ideas.

Keeping this in mind, we can divide “transition” into two segments—one which is actively trained at school and another that families will actively plan. The first segment comprises the academic-social/emotional and functional aspects, intended to prepare the student to gain the necessary vocational or work skills in their preferred career choice. This training is in the pre-employment transition area that would be trained in school. The goals here will relate to post-secondary transition and, as always, should be relevant, measurable, and hands-on for the student’s chosen career area.

For instance, if workplace readiness is an identified pre-employment area, postsecondary transition goals should be skills like the ability to follow instructions with one verbal prompt and a visual task list.

The second important segment is on the family’s side of preparing for adulthood. It includes learning to get waiver services, creating financial support options, determining appropriate program placement, and, perhaps most vitally, learning to let go! Families need to prepare the individual to function independently. Personal independence can be greatly fostered by encouraging the individual to self-advocate in the ways they’ve been taught or find most effective.

Granted, many friends on the spectrum are nonspeaking or may continue to require an adult to assist them in making critical life choices, so their versions of self-advocacy may be more specialized. Regardless, every effort must be made to ensure we have listened to and acknowledged the wishes of those whose life choices we are making.

1.

The process of transition planning in school may start as early as possible, but around the age of 15 (typically grades eight and nine) this conversation should be actively engaged in by the student, parent, and special education teacher/case manager. So, what would that conversation be about? Start with broad preferences: Does the student like to sit while working, or would they rather stand? How long can the student work at a time? How frequently do they need breaks? Does the student like to work indoors or outdoors? What kind of accommodations are necessary? Key adaptive behavior considerations to discuss would be: Can the student accept re-

Exceptional Needs Today | Issue 9 | 63

PARENTAL SUPPORT

direction? Can they handle sudden changes in routine?

Can they follow instructions in a small group? Can they wait during an unstructured time? What is the student’s dream job? What do they want their future to look like?

This initial assessment would help identify the student’s strengths, preferences, needs, and interests. Parent input is also gathered on parent-identified needs and preferences, particularly regarding the student’s living situation. As is evident, a lot of these skills are a work in progress. These skills can be taught to be part of the student’s repertoire through their years at school. Individualized Education Programs (IEPs) should address the broad skill sets typically referred to as executive functioning skills required for a successful post-secondary transition.

The postsecondary transition pathways are varied for individuals on different parts of the spectrum—some students may advance to regular college or move to specialized college programs, while others may take on work-based learning internships or participate in sheltered vocational training settings. Our goal as educators is to find the placement that is best suited for our students and prepare them to acquire

64 | Exceptional Needs Today | Issue 9

the foundational skills needed to function successfully in that setting. Our goal as parents is to relentlessly advocate for the best possible outcome for our loved ones by ensuring they are active participants in this decision-making process. For the nonspeaking students, we should provide every support needed (visuals, assistive communication devices, etc.) to ensure we have accorded dignity and respect to the individual’s wishes for their own life ahead. In this regard, some of the components of pre-employment training must include: From the family’s perspective, the biggest box to be checked is enrolling their child in the waitlists for waiver services provided by the state. Waitlists for state waiver programs can range from one year to more than a decade long, depending on the state of residence. It is really very important to get on these lists early on if you are in one of those decades-long waitlist states. By early on, I mean the elementary school years. Many parents wonder if these waiver services would be required at all by their children. I sure hope such services are not required, but it would not hurt to be on the list and then decline services as deemed fit when the time is right. I remember during one IEP meeting, a parent retorted, “I can’t

PARENTAL SUPPORT

think of tomorrow; what do you mean when he’s an adult?” regarding my suggestion on the waitlists. Yes, that is the experience for so many families. However, time flies, and this is the best option if services must continue without a break or limit via high financial commitments. All it takes is a phone call for intake!

Another important aspect is getting oneself educated on the postsecondary transition process. How do you adequately prepare for the “off the cliff” stage? What are your student’s living options? Their vocational or employment options?

What services will they be eligible for? There will never be an easy answer to this, but I would suggest going to parent training and awareness sessions to understand the process. Other parents who have been-there-done-that are an excellent resource for ingenious ideas! Many parent support groups are dedicated to assisting families with the many complexities these processes entail. Waiver program services and eligibility have always been rather confusing and tricky, and it can bring some much-needed assurance if a helping hand assists with your navigation!

Guardianship is a decision faced by families once their loved ones are 18 years of age. Again, there are careful considerations to be made while deciding on this. We want to advocate for and honor our children’s functional abilities fully.

Therefore, whether your family decides on guardianship, power of attorney, or nothing at all is a decision that will have to be well thought out. As much as possible and in the

manner fit, it is extremely critical to explain to your loved one what each option means and how it may affect them longterm. Many webinars are hosted on this topic too, which can help you make the best possible decision for your family.

Financially, a trust fund may need to be set up. A financial and legal expert specializing in this area is your best bet. Recommendations from other parents help greatly! Medicaid eligibility at 18 years of age is automatic, but I would suggest gathering feedback from parents on the most recommended and popular managed care provider. You would be surprised how much of a difference they make for services. This is the time to apply for Supplemental Social Security Income (SSI) as well. These processes are time-consuming and may require following up (who are we kidding? They DO require follow-ups!), but they must be done.

I will admit this part of the process seems akin to juggling multiple balls at once with your eyes closed and praying you didn’t miss any while trusting you will catch them all! Add in dollops of patience, non-availability of support staff, respite care, and availability of a well-rounded program that will match your child’s needs, and it becomes even more difficult.

But then, when have challenges deterred us? We just need to get going and get it done, don’t we?

Because we never give up. Because together we can do great things. Because surprise! Autism does not expire at 18!

Exceptional Needs Today | Issue 9 | 65

PARENTAL SUPPORT

I will admit this part of the process seems akin to juggling multiple balls with your eyes closed at once and praying you didn’t miss any while trusting you will catch them all!”

Sanjukta B. Mukherji, BCBA, LBA, is a Board-Certified Behavior Analyst based in Houston, TX. She has two decades of professional and life experience working with neurodiverse individuals in clinical, educational, workplace, and community settings. She is a former special education high school teacher and is currently a Behavior and Transitions

Consultant, providing behavior analytical services to school districts, clinics, and employers. Her focus is to impart functional academics and behavior supports in the classroom, create opportunities for inclusion at all levels, and promote sustainable long-term services and supports to adults of all abilities.

Autism Evaluation Resource The Inland Empire Autism Assessment Center of Excellence (AAC) is a non‐profit, evaluation‐only center that provides a singular solution to a multi‐specialty evaluation process.

We provide the “Gold Standard” in Comprehensive Diagnostic Evaluations for autism and other neurodevelopmental disorders through a transdisciplinary team of experts in the fields of neurology, neuropsychology, occupational therapy, and speech and language pathology.

We’re a trusted resource for thousands of caregivers and hundreds of physicians for children with medical, behavioral, sensory, social, or other complexities.

We look forward to collaborating in supporting the children and families of our shared community!

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66 | Exceptional Needs Today | Issue 9

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Transitioning from a Pediatrician to an Adult Physician

By Tammy Flynn The book Transitioning from a Pediatrician to an Adult Physician will become your essential guide to taking the right action steps in transitioning your young adult from their pediatrician to an adult provider. Transitioning into adult healthcare can be an overwhelming and stressful experience. Tammy takes you and your young adult step-by- step through the process and phases of bridging from a pediatrician to an adult physician. As your young adult continues on their healthcare journey, making sure that they have healthcare providers to support them medically and to advocate on their behalf is vital in creating best outcomes.

In this Book, you will learn: • The in and outs of transitioning to an adult primary care physician • When to start working with your young adult to prepare them for the transition • How to evaluate prospective doctors to see if they are the right fit • Strategies for keeping everything organized • How to navigate the transition process with tools, templates and resources • Ways to empower your young adult to self advocate and help promote independence • This book comes with downloadable templates and tools to help simplify the process & provide additional support This Book is excellent for: • Young adults with special needs & their parents/legal guardians • Young adults with complex and chronic medical conditions & their parents • Young adults with complex or chronic medical conditions transitioning to adult healthcare providers

TO PURCHASE: https://www.amazon.com/dp/B0B28N3YWH?ref_=pe_3052080_397514860 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 9 | 67 ADVERTISEMENT

BEHAVIORAL HEALTH

ADHD Coach Reveals Her Own Diagnosis and Journey

By Faigy Liebermann, AACC, PCAC, ACC MENTAL HEALTH PROFESSIONALS WHO SPECIALIZE IN DIAGNOSING ATTENTION-DEFICIT/HYPERACTIVITY DISORDER (ADHD) OFTEN OVERLOOK THE MOST CHALLENGING SYMPTOM: THE EMOTIONAL WORLD OF THEIR PATIENTS.

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BEHAVIORAL HEALTH

T

he root of ADHD difficulty is the inability to manage and successfully control emotions. Anger management issues, overreacting without thinking things through, being super-sensitive to criticism, overwhelming negative thought patterns, depression, anxiety, shutdown, crippling fear, and debilitating worry are just a few of the symptoms of ADHD emotional dysfunction.

Difficulties in regulating intense positive emotions lie on the opposite side of the scale.

I forgot to take the dose for two days. Then, on the fifth day, when I left the house early for an appointment, I was aware of a distinctly nervous feeling. I noticed I was driving too fast.

I realized I hadn’t felt like this in a while. I realized the meds must be working after all. Okay, I must have ADHD…

These emotional difficulties have a far more significant impact than attention difficulties. Emotional self-regulation affects every part of a person’s life. You can forgive your friend for arriving late or spacing out for a few minutes during a conversation. It will be much harder to forgive your friend for lashing out at you. Driving and criminal offenses will not be overlooked because of ADHD either. Tragically, a very high proportion of people in prison have ADHD.

This was on Friday. I am Jewish, and we observe the Sabbath.

Sabbath comes in at sundown. In the winter, this is early, around 3:30 p.m.

When a client mentions they may have ADHD, I am more concerned with their levels of emotional self-regulation than their difficulty focusing.

ADHD treatment needs to focus primarily on becoming selfaware and learning how to recognize and control irregular and often overwhelming and stormy emotions.

Here are the top three difficulties in ADHD women: • Poor (or non-existent) working memory • High emotional volatility • Anxiety/non-stop thoughts that destroy one’s peace of mind

My journey on ADHD meds

I only received a formal ADHD diagnosis in November 2019.

An ADHD professional advised me to get an ADHD assessment since he claimed I clearly showed classic signs of ADHD. I knew I had an “ADHD Personality,” but I still didn’t believe I had ADHD. I decided to get assessed because I wanted to understand what my ADHD clients went through during their ADHD Assessments. I got diagnosed with “A severe case of ADHD.” I decided to try medication so that I could understand my clients. I was still convinced I did not have ADHD, and the meds wouldn’t work right. I was prescribed Concerta.

The first week I took one 18mg tablet. You know what they say, if the ADHD meds work, then you have ADHD without a doubt.

If they don’t work, then you probably don’t have ADHD. The first week the meds had no effect. In the second week, I was very eager to see if there was a difference when taking two tablets (36mg).

I was disappointed that I felt no difference in the first week.

Maybe I didn’t have ADHD after all…

During week two, I took two tablets for three days, and then

I got back at 10:00 a.m. and took two tablets. Since I hadn’t taken them for two days, I felt a bit off. I pushed through.

Around 2:00 p.m., I noticed I felt calmer.

After I had lit the Sabbath candles, I sat down with my sevenyear-old son to play with him. This is our weekly ritual. Every week I tell him this is the best time of the week for me! I tell him I just love to play with him and can’t wait for this time.

I don’t tell him it is the hardest time of the week. This week, I played a game with my seven-year-old son for 45 minutes without getting up once.

I listened to a detailed account from my teenage daughter for 20 minutes—with patience and focus. Her story was interesting for the first time ever.

Suddenly everything was coming into focus. I felt like my eyeglass prescription had been fixed, and I didn’t even know it was faulty—I was not looking out at the world in a fog anymore.

The most amazing change is that food is no longer “talking to me” and “pulling me.”

I had a diet coach attend my home for weekly sessions for the last three years. I am five foot five inches and a regular size 14.

For forever, especially the last five years, I felt that something was “off.” It was so very hard to eat a balanced diet and maintain self-control.

Since starting on the meds, my level of feeling in control regarding food has turned around 360 degrees.

I am far less tempted to take a quick nibble or bite. This is even when the meds wear off. Pre-meds, I would have had a mighty hard daily battle with myself not to eat any snacks. I am so delighted that one of the side effects of taking ADHD meds is a reduced appetite! The medication helps control unmanaged impulsivity, one of the deficits of ADHD. There was a minor extended family crisis on Friday afternoon.

I handled it calmly. Later that evening, I discussed this incident with my daughter and husband. Listening to myself, I couldn’t believe I was able to keep my voice at a steady level and calmly explain myself. This had NEVER happened before.

No hysterical histrionics, no drama queen. Just clear, calm,

Exceptional Needs Today | Issue 9 | 69

BEHAVIORAL HEALTH

and solution-oriented. My thoughts were focused, and I could work through the problem. No more jumbled, tangled mess, just one thought at a time.

I have been on ADHD meds for over two years. I still feel an intense feeling of relief every single day when I feel the meds kicking in.

To take ADHD meds or not to take meds?

Many people are wary about getting an ADHD diagnosis or label. It doesn’t matter what label you have. The label doesn’t define who you are. It defines your symptoms. If the ADHD meds work, then who cares what label you have. The most important thing is having a better quality of life. You only have one life. Why should it be more challenging just because you have ADHD? Parents tell me they are not giving their children ADHD medication. However, please consider the following situation. If your child has Type One diabetes, the body doesn’t produce the hormone insulin and cannot correctly get the energy and fuel it needs from glucose. Therefore, your child needs a daily insulin injection. Preventing this treatment is cruel and life-threatening.

If a child has ADHD, their brain has a deficiency in dopamine and norepinephrine. This means ADHD is a physical condition, just like Type One diabetes. Administering ADHD meds has been found to increase dopamine levels in the brain and improve attention in those with ADHD. The meds work. If your child has ADHD, you owe it to your child to let them try it out. If you have ADHD, you owe it to yourself to get assessed and try the meds. See the difference it can make in your life. If one type of medication doesn’t work, don’t give up. Just try another one until you experience change. You need to persevere.

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Successful ADHD management is pills and skills

ADHD meds only support between 30 to 50 percent of ADHD deficits. ADHD coaching is vital to support the remaining deficits and provide the skills the ADHD brain lacks. The meds only help manage mood and focus. They don’t improve your working memory or organization, time management, or decision-making. These need to be learned through a specialist ADHD coach.

ADHD symptoms, especially in women, often worsen as women approach the peri-menopause stage. I have achieved the impossible without meds, working mightily hard to create and stick to routines and ADHD-friendly changes in my life and my family, and helping countless clients to manage their ADHD successfully. If I could relive my life, I would take the meds from age five! Life is tough. Why should your life be more challenging than it already is?

Managing anxiety

Now I understand why my super high anxiety wasn’t shifting, no matter how many therapy sessions I attended and how many hours of mindfulness exercises I carried out. I now know my anxiety was caused/worsened by my unmanaged ADHD; those chemicals in my brain were unbalanced. My intense nature and my very high and very low moods are common among those with ADHD, especially women.

Being medicated for my ADHD has helped me work through problems that crop up calmly. I own my impulsivity, that inner drive that pushes me to do things neurotypical people would think twice before doing. This is to my advantage. If I can help more women with ADHD unlock their potential, it will be worthwhile.

BEHAVIORAL HEALTH

What do you tackle first, the pills or the skills?

If you think you or your child may have ADHD, the first step is to get an assessment. Please bear in mind that every situation is unique. You will encounter many paths that lead to the top of the mountain. It doesn’t matter which route you choose.

Just stay on that path until you reach the summit. Getting your ADHD diagnosis and meds should come before you learn the skills in an ideal world. Implementing the ADHD tools your ADHD coach will teach you when your brain is supported is so much easier.

If you prefer to get your diagnosis before starting ADHD coaching, this may get tricky. It can take months to get an appoint-

ment and even longer until your ADHD is well-medicated. The only time you have is now. Use it wisely.

Dr. Raun Melmed runs the Melmed Center in the USA. He specializes in ADHD and autism spectrum disorder (ASD). Dr. Melmed issued a strong statement indicating that if doctors prescribe ADHD medication without prescribing additional supports (such as coaching), they are using the medications off-label and illegally because pharmaceutical companies clearly state the medications alone are not enough. He sees clinics of the future including not just diagnosticians but care coordinators, professional organizers, and ADHD coaches (ACO Conference 2014).

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

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SKILLS FOR LIFE

Back-to-School Social Skills: What You Need To Know

By Kirt Manecke THE PAST FEW YEARS HAVE BEEN ROUGH ON ALL OF US. BUT IN THE EDUCATION SECTOR, THE CHALLENGES HAVE BEEN GREAT. EDUCATING KIDS DURING A GLOBAL PANDEMIC IS SOMETHING NONE OF US WERE PREPARED FOR. THE STRESS ON TEACHERS, PARENTS, AND ADMINISTRATORS HAS BEEN HEAVY, AS THEY WERE TASKED WITH MAKING SURE CHILDREN WERE GETTING WHAT THEY NEEDED IN AN ENVIRONMENT THAT DID NOT ALWAYS FOSTER LEARNING. BETWEEN THE SHUTDOWNS AND HYBRID LEARNING, IT HASN’T BEEN EASY.

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SKILLS FOR LIFE

Even before the pandemic, school was never simple for kids who may struggle with social anxiety, nervousness, and just being a young person nowadays. And for those who feel like a fish out of water after an extended learn-from-home period, it can be even more daunting.

But it doesn’t have to be. Here are some ways students can get back into the swing of things within brick-and-mortar school walls. All individuals are different. Some people will be able to practice only one of these skills mentioned in this article, and some will be able to do them all—and that’s okay. It all starts with a smile.

Just offering someone a smile, even someone you don’t know, is the foundation of good people skills. As Virgin Group founder Richard Branson has said, “Smiling can be a competitive advantage. It makes every person feel a little better and every situation a little brighter.” Branson is a businessman who’s had much success in his life. How much do you think having good social skills contributed to that?

Let’s expand on the power of a smile. To really make a good impression—and remember your basic manners after sitting in front of a screen for months—you need to combine your brilliant smile with two things: meaningful eye contact and a verbal greeting. No emoji will capture a smile more than a live, in-person grin.

Making eye contact is a challenge for some people. There’s a reason the saying “the eyes are the window to the soul” has stuck around so long. Some people feel vulnerable when they make eye contact with someone else, especially when it’s an authority figure like a teacher or an administrator. It’s a fear that can be hard to overcome, like public speaking. Everyone is different— and making eye contact isn’t a requirement for all people.

One way to overcome that fear is to practice in the mirror with a family member or a friend. If you are uncomfortable making eye contact, here’s a tip from my book, Smile & Succeed for Teens: look at someone’s nose when talking with them.

Shaking hands is also an excellent way to connect to people, but in this day and age, some may feel more comfortable with a nod or a fist bump. This is something you may consider doing when encountering a teacher or administrator. A firm handshake or hearty fist bump makes a great impression on adults.

After a few instances of making eye contact and smiling, you may want to take it a step further and introduce yourself. The ice should already be broken by now, so there should be no weird feelings. It doesn’t have to be an elaborate production. Something like, “Hi, my name is Ben. What’s yours?” should suffice.

How do you keep your social life going? How do you create friendships and nurture them to grow? Remember the Golden Rule: “Treat others the way you want to be treated.”

It sounds so simple, and yet, if everyone did that, the world would be a different place. We may not be able to control what the whole world does, but we can control ourselves and how we act and react to things. There will be days when you encounter someone—or many people—who are having a bad day. You may even be in a bad mood, but what you should never forget is this: spreading negativity never helped anyone.

Being a good friend sometimes takes skill and work, especially when you are having a bad day. Here are a few tips to remember: 1.

2.

3.

Pay attention and listen Ask questions Exhibit attentive body language—stand up and sit down—don’t slouch

Since the advent of technology like cell phones, social media, cable, and streaming TV, there have been many studies that have determined an overall loss of concentration and the ability to listen within society. This point is another sticky one for students who love their technology. But the fact of the matter is that putting down your electronics is beneficial when having

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SKILLS FOR LIFE

a face-to-face conversation. This will improve your social skills and make school more enjoyable.

“The only way to have a friend is to be one.” Poet Ralph Waldo Emerson said that a long time ago, and it still rings true today.

Also, remember to say please and thank you. Say “Please” when you request something from someone. For example, “Could you please pass me the mustard?” Say “Thank you” when someone does something nice for you. Taking the time to say, “Thank you for opening the door for me,” shows your gratitude and can help create a positive atmosphere.

These are just some of the things you can do to brush up on your social skills, not only for school but for life. Getting the basics down now will improve your confidence and self-esteem, reduce anxiety, and help you in the long run.

Kirt Manecke is an award-winning author. Endorsed by Temple Grandin, his book and new online course, Smile & Succeed for Teens, is a crash course in social and career skills. It is also available as an audio book. Classroom packs with teaching guides are available. The online course is ideal for at-home or virtual learning. For career skills training for adults with special needs, Kirt’s book Smile: Sell More with Amazing Customer Service is a 60-minute crash course in customer service and sales.

Website: www.SmiletheBook.com Email: Kirt@SmiletheBook.com

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EXCEPTIONAL ADVOCATE

Lauren Pearson: Author, Advocate, Neurodiversity Enthusiast

By Margo Marie McManus

M

eet Lauren Pearson, author of The All-Inclusive Guide to Neurodiversity and founder of DiverseNeuro, a non-profit organization intended to spread accessible education surrounding neurodiversity and de-marginalize individuals with disabilities. She’s also a high school senior from Ontario, Canada, who accomplished these feats in less than a year.

Lauren has always enjoyed books and was an avid reader as a child. Because of this passion, she says she’s always been inspired to write her own book. “I found like, almost an escape—a peaceful sense of belonging through reading books, you know,” she explained, “And I really wanted to continue that through my author process, the self-publishing process.”

But it wasn’t until her career in advocacy kicked off that she was able to fulfill this dream.

Lauren’s interest in neurodiversity and advocacy was piqued when she was diagnosed with attention-deficit/hyperactivity disorder (ADHD) and autism at 16. Before her diagnosis, Lauren questioned herself and her identity, troubled by being different from the norm. It was a challenging period, and she felt like there wasn’t much of an area where she was included. But once she got her diagnosis, things kind of clicked: “I was like, oh my gosh, this makes so much sense! Like, right? And I think a big part of why I didn’t notice it before was because I didn’t even know this stuff existed. And you know, I didn’t even know diversity was a thing for brains.”

As she settled into her diagnosis and searched for more information, Lauren noticed even more gaps in neurodiverse education and awareness, especially regarding gender inequality

in neurodiverse conditions. Her understanding of the need for more accessible information was only heightened through her work as a committee member of the Network for K-12 Advocacy and Education (NNEA) initiative with the Stanford Neurodiversity Project. But she wanted to do more.

In the summer of 2021, Lauren began brainstorming for her first book. She also reached out to the Centre for ADHD Awareness, Canada (CADDAC), looking for volunteer opportunities.

To her delight, a representative called her back in October, inviting her to speak at a virtual conference. Lauren jumped on the opportunity to share her journey and connect with others, viewing it as the catalyst for her advocacy career. “It was so mind-opening…even just getting to communicate my thoughts and seeing all the comments from different people…I was like, wow, I really want to keep doing this. So, after that, I kind of created DiverseNeuro [in November],” she recalled.

Luckily for Lauren, she loves keeping busy. While she worked to get DiverseNeuro off the ground and went to school, Lauren continued her writing from the summer. As she wrote, she explored what resources we lack in society as well as herself, describing it as a self-process. Drawing only from her own experiences and observations, Lauren could openly share her passion and knowledge with the world by self-publishing her first book at the end of December.

Advocacy wasn’t the only interest to blossom that summer.

After watching the Lenox Hill Neurosurgery’s BRAINterns Webinar Series in July, Lauren became fascinated with neuroscience. She loved how she could tune into something so

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EXCEPTIONAL ADVOCATE

chology university programs and finishing out her final year of high school, but she aims to lead and grow DiverseNeuro into something that will have even more of an impact. She hasn’t stopped writing with purpose either, hoping to continue her advocacy efforts by eventually adding an autobiography focusing on misogyny and gender inequality to her name.

Margo Marie McManus is an editorial assistant for Exceptional Needs Today. She graduated from Clemson University in 2021 with a degree in Graphic Communications. Her interest in the exceptional needs community and autism awareness was first piqued when assisting students in the Writing Lab as a consultant. She furthered her interest by interning and writing articles for Autism Parenting Magazine and Exceptional Needs Today. She enjoys reading and writing poetry and has over 15 poems published in various magazines and anthologies, including Teenage Wasteland Review and The Chronicle. She’s also a big fan of cats.

ALL CHILDREN ARE SPECIAL! informative straight from her bedroom, and that world-class neurosurgeons were willing to dedicate their time to “treat us like we’re not just some random person, but with respect” and “speak about their niche in neuroscience and making it accessible for everyone.” She is especially interested in how neuroscience can be used to help explore and explain neurodiverse conditions like ADHD and cerebral palsy and is considering becoming a neuroscientist in the future.

Inspired by the surgeons’ commitment to sharing such typically obscure and inaccessible information, Lauren channeled her desire to do the same into creating DiverseNeuro.

She believes their dissemination of information surrounding neurodiversity will raise awareness in schools and change the narrative: “Different is not bad, and, you know, we’re all different. We have different brains. We need to embrace them.

They might be different physiologically, but that’s how we can better contribute to society and make a difference!”

After everything she has accomplished, Lauren doesn’t plan to relax anytime soon. Not only is she applying for numerous psy-

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PARENTAL SUPPORT

Back-to-School Advice: Nine Things to Remember

By Nicole Dauz WHY DOES GOING BACK TO SCHOOL CAUSE SO MUCH CHAOS AND DISRUPTION IN OUR LIVES WHEN IT’S A YEARLY EVENT? DO THE CIRCUMSTANCES REALLY CHANGE THAT MUCH FROM ONE YEAR TO THE NEXT? I KNOW SOMETIMES IT FEELS LIKE I HAVE AMNESIA AS I CAN NOT APPEAR TO LEARN FROM PREVIOUS BACK-TO-SCHOOL MISADVENTURES AND COURSE CORRECT. OR IS THIS SIMPLY A REMINDER OF HOW WE ARE USUALLY IN SURVIVAL MODE, SO CAUGHT UP IN THE PRESENT-DAY CHALLENGES OF PARENTING A CHILD WITH EXCEPTIONAL NEEDS THAT THE SHIFT CATCHES US OFF-GUARD? THESE ARE MOMENTS WHEN SELF-COMPASSION AND GRACE ARE IMPORTANT.

D

o you ever find yourself being overly critical of yourself, telling yourself you should know better? I certainly do, so let’s all try something different this year as we prepare for the return of school. First, let’s remind ourselves of the realities of this annual transition and then set some intentions on how to advocate for the best year yet.

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1. Do a reality check-in

The interesting thing about back-to-school time is that everyone is in the same boat—the students, the teachers, the educational assistants, etc. So, what’s new?

• new routine • new classmates • new teacher/educational assistant(s)

PARENTAL SUPPORT

• • • •

more structure (scheduled breaks to eat and exercise) more sitting more listening more focusing

Yikes—that doesn’t sound encouraging for teachers and parents, but think of it more as setting the stage so we can be more compassionate and understanding with the back-toschool transition.

2. Set intentions

Truly accept that we cannot change reality, yet we can control how we react and show up in all situations related to going back to school for our kids. What happens when a child is non-verbal, has a limited vocabulary, or doesn’t speak about their school day? How do we know our kids receive the support and assistance they require and deserve?

3. Trust your gut

We parents know our children best, so try to watch for changes in behavior and mood that would go above and beyond the average.

4. Inquire within

Ask yourself, “What would make me feel engaged about how my child’s day went at school?” For example, having the teacher write a short note daily or twice a week, sending you a weekly wrap up, or adding a thumbs up or thumbs down placed to their backpack each day.

I had no way of knowing how my daughter’s day went because she couldn’t tell me. But, I certainly noticed the difference (decline) in daily communication when she moved from elementary to junior high school. So I knew I would need to find another way to gauge how her school experience was going.

5. Advocate for communication

There is never any harm in asking the teacher for ways to communicate with the parents when it relates to your child. It’s a balance between accepting each teacher’s communication style and finding a compromise that meets your needs as the parent.

6. Be firm and kind

When the time arises for you to set boundaries on acceptable and unacceptable behavior, feel empowered to put your thoughts to paper and share a copy with the principal or vice-principal. Have a trusted friend review the email before it is sent and ensure it is coming from a place of good intentions, not anger or finger-pointing.

7. Provide full attention

When I get my daughter out of the van and bring her into the house, I let her lead. I must admit it’s taken a long time to get here, and now I chuckle at just how long! I block out the time

on my calendar and put my phone away so I can be fully present for those first moments she comes home. I’ve moved from rushing to put her stuff away and get her settled to taking time to hug her for a good five seconds, then simply being with her while she does her thing. Based on her mood, I will either play with her right away—sometimes she grabs my hand and says, “Mommy, play,” and other times, she takes her iPad and goes right to the playroom by herself.

8. Schedule playtime and fun

Life can easily become serious and routine when we follow a daily schedule. The weekdays focus on school drop-offs and pickups, therapy sessions, and appointments; while the weekends focus on cleaning, groceries, and extra-curricular activities. Consider sneaking in a dance party as part of your

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pre-dinner or bedtime routine. What’s your child’s favorite song to sing? These simple activities take five to ten minutes and often invite laughter and fun into the mundane daily routine.

9. Shake up lunch

Variety is the spice of life. I used to make my daughter a set lunch for each day of the week on repeat. For example, Monday was a tortilla roll while Tuesday had chicken nuggets. Now, I try to buy different fruits and vegetables each week to go with it, so the snacks are different to keep it more interesting for her without making it too changeable.

I would like to share that regardless of the hiccups that may occur with my daughter and her return to school, I am always grateful there’s a school program that welcomes her, with teachers and educational assistants who want to work with children like my daughter and help them progress.

Always look for the solution, and it usually appears. I wish everyone another wonderful school year.

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 with 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.

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EXCEPTIONAL NEEDS TODAY

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.

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SKILLS FOR LIFE

THE AUTISM PARENT’S GUIDE TO FRIENDSHIP AND DATING IN FIVE STEPS

By Jeremy Hamburgh

COUNTLESS YOUNG ADULTS ON THE AUTISM SPECTRUM HAVE A DEEP DESIRE FOR MEANINGFUL FRIENDSHIPS AND ROMANTIC RELATIONSHIPS, BUT THEY FEEL STUCK. THEY SEE A GAP BETWEEN THE LIFE THEY HAVE AND THE SOCIAL LIFE THEY WANT—AND THEY HAVE NO IDEA HOW TO BRIDGE IT. So, their free time is taken up mostly with screen time. Marathon video game sessions. Hours of scrolling on TikTok. Going down the YouTube rabbit hole. Autistic young adults kill extraordinary amounts of time watching others live their best lives, and their parents are left in a bind!

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On the one hand, most autism parents hate how much time their children spend staring at screens. They know it’s taking a toll on their young adult’s health, both physically and emotionally. They know video gaming and TikTok videos aren’t getting their children any closer to the life they want.

On the other hand, most autism parents don’t know what else to do. They’ve tried everything, and nothing has worked.

Persuading. Prodding. Nagging. Bargaining. It’s exhausting, spending year after year trying to inspire their young adult to build a social life and seeing nothing come of it.

Until recently, there wasn’t much guidance to give parents because nobody had a solid answer to the loneliness, helplessness, and frustration felt. Everyone had an opinion about

SKILLS FOR LIFE

isn’t. It’s really just five things. I call them “The Five Steps.”

And when you help your child takes these steps, it can completely change the trajectory of their social life. So, let’s talk about them.

STEP 1—Visualize what a vibrant social life looks like Living a short hop from Disney, my thoughts often drift towards storytelling. So, the first step is all about helping your young adult decide what they want their life to look like and whom they want in it.

When your child doesn’t have clarity about their future, there’s no vision driving them forward. Every day tends to be very much like the ones before it because, to paraphrase a quote from Alice in Wonderland: If you don’t know where you’re going, any road will take you there.

But when you help your young adult create a vision for their social life, we can reverse engineer the strategy for making it real. And that alone—having a solid strategy—is often enough to motivate your child to take action because it makes the gap between their current life and their dream life feel bridgeable.

STEP 2—Find their tribe

Friendships can feel magical. But there’s actually a very specific equation for what a friend is. A friend is someone who shares at least one common interest, accepts you for who you are, and is committed to nurturing their relationship with you.

When any of those three elements is missing, it’s just an acquaintance.

Many autistic adults have tried going out to bars, but nights at the bar usually end in failure and dejection. Bars tend to be terrible places for people on the spectrum for many reasons, including the potential for sensory overload.

what autistic people should do. Social media! Online dating!

Meetup groups! But they proved fruitless for most people on the spectrum. Sometimes the “cure” was even worse than the problem!

Here’s the good news: Millions of adults have autism, and a small group has found ways to be socially successful. Some autistic people have made wonderful friends, met terrific partners, built incredible relationships, and even started families. They cracked their personal code, and they’re living a radically different life because of it.

Here’s even better news: I’ve spent over 12 years observing and learning from those top social strivers on the spectrum, and I’ve seen firsthand what they are doing that everyone else

So, autistic young adults turn to the internet, where they try to meet others on social networks and dating sites. Again, failure and dejection. There is a whole universe of hidden rules to interacting on the internet, which people on the spectrum tend not to know, so connections tend to be fleeting or non-existent. Equally important, even if someone autistic connects with another person on the internet, they still need to meet in person, which is an entirely different set of social skills. That’s why the internet can make it twice as hard to meet people—it doubles the layers of hidden social rules.

When your child finds their tribe, meeting new people is much easier. Your child can be the best version of themselves when they’re surrounded by others who share common interests.

STEP 3—Build their mental library

It’s entirely natural for people to freeze up in social situations when they don’t know what to say. Your child sees someone

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SKILLS FOR LIFE

Your child has hidden superpowers. Whether it’s their honesty, loyalty, creativity, or tenacity, your young adult has gifts to share. So, spend some time uncovering what they are. And then spend some time deciding how to best use those superpowers to their advantage.

When your child finds their superpower, they can focus on their strengths. They can feel proud of who they are. And they can go into the social world with a level of confidence other people find magnetic.

STEP 5—Choose the right mentor

Behind every outstanding achievement is a mentor or a coach.

Athletes have mentors. Businesspeople have mentors. Heck, I have five of them! And there’s a reason: The right mentor or coach is often the difference between success and failure.

Whatever your young adult is struggling with, the right mentor has seen the problem, knows how to fix it, and will hold your child’s hand every step along the way. The right mentor will also inspire your young adult to follow the strategy and hold them accountable when they don’t. The right mentor may even support you—the parent—in a way you’ve never felt before.

who seems cool or looks attractive across the room, but they have no idea what to do next, so they do nothing.

Nobody is going to risk approaching someone new when they fear getting tongue-tied or having their mind go blank. Your child doesn’t want to risk feeling ashamed and being rejected. So, they stand on the periphery. Or worse, they don’t even leave the house.

That’s where a mental library comes in. It is a collection of questions to ask, answers to give, and stories to tell that your child can rely on when they’re having a conversation. When you help your young adult build that mental library, they can be present in the conversation without worrying they’re saying something wrong or silly. In turn, that inspires them to have more conversations and then more successful ones. It’s an excellent tool for starting a cycle of success.

STEP 4—Find their autism superpower

One thing that drew me to the autism community was the radical honesty and loyalty of its people. I’d never seen a group of people more adept at calling a spade a spade and more willing to stick by each other through thick and thin. The world needs more of that!

But too often, autistic young adults dwell on their weaknesses. They dwell on what they’re missing. And what gets lost is just how much light and love they have to share with a world that so badly needs it.

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I mentor autistic young adults as they step out of their comfort zone and into their power. I help my clients form their vision, find their tribe, develop their mental library, find their superpower, and use all of that to attract new friends and relationships into their life. And I can see in my clients that having that level of support, know-how, and encouragement makes all the difference in the world. So, find the right mentor for them, too. It can make all the difference for your child.

Jeremy Hamburgh is a dating and friendship coach who focuses exclusively on empowering adults with autism to make friends, go on dates, and build loving relationships. He has over 12 years of experience coaching autistic adults into the social lives they want and deserve. He’s worked with a variety of organizations on dating and friendship skills workshops, including Adaptations, MatchKonnect, Boost!, GRASP Chicago, Chicagoland Autism Connection, and NJ Aspies 4 Social Success. With a commitment to kindness, compassion, community, and world-class support, Jeremy has spent over a dozen years honing The Social Life 360 Strategy— an innovative combination of online, group, and personalized training that empowers his autistic clients—and their parents—to consistently succeed at building friendships and relationships. Learn more about his approach at MyBestSocialLife.com or schedule a nocost 90-minute Strategy Session for your family at MyBestSocialLife. com/Apply.

MY WORD

Our Exceptional Story: It’s Never Too Late for Love

By Mary Tutterow

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MY WORD

If I could go back and do it all over again (and I would!), I would’ve chosen Love sooner. Let me explain.

Our first child, Mary Addison, was born with a severe seizure disorder—seizing hundreds of times a day. At her delivery, during an emergency C-section, she was whisked away immediately to a Neonatal Intensive Care Unit (NICU). The first time I held her, she was covered in wires attached to monitors. After holding her for just a few seconds, she began to seize, and a team of doctors and nurses whisked her away again.

When we were finally allowed to go home, we were sent with bags of meds, machines, and minds full of endless instructions on dealing with seizures. We were told she would probably not live to see her first birthday, and if she did, she would be profoundly challenged. Our hearts were broken.

I dove into research, believing I could find “the cure.” I built an information network and had “feelers” out all over the world.

While she was still a tiny thing, I was lugging her all around, subjecting her to endless probing and scrutiny. Drugs, therapies, surgeries, holistic treatments—we tried them all. Then one day, there was nothing more to try.

It’s as if the time bomb that had been ticking had been diffused. We had tried everything we could find to prevent a seizure from taking her life. Nothing worked, yet she was still alive! Years had passed in a haze of waiting rooms, airport terminals, hotels, and hospital rooms. As the dust of the whirlwind began to settle, it dawned on me that I only really knew my daughter as a problem that needed a solution, a broken person who needed to be fixed. I had been so afraid of the heartache that I never let myself fall in love with this beautiful, brave, funny, and wonderful person.

We loved her. We cared for her. We sacrificed for her, but the miracles began when we accepted her, just as she was—our

Without preaching, without a plan, without words, Mary Addison had taught us selfless, unconditional love. She brought us together as a family.

daughter who has seizures. At first, it was just a subtle shift in perspective. There was no “fixing” her. Things weren’t going to get back to normal (whatever that was). We weren’t going to recover. No, we had been forever transformed by this experience we thought would’ve been the end of us. Our marriage, our finances, our social life, and our emotional and spiritual perspectives were dramatically affected. This experience had brought out the worst in us. But what is hidden in darkness festers, and what is exposed to the light heals. Mary Addison’s suffering caused us to do deep inner healing to survive.

Without preaching, without a plan, without words, Mary Addison had taught us selfless, unconditional love. She brought us together as a family. Mary Addison introduced us to the profound power of forgiveness. She taught us to see beyond appearances and abilities, to look at the heart, and to see the unlimited possibilities of God in everyone.

Yes, her condition broke our hearts, but instead of putting on a brave face and carrying on, I wish I had lingered in the pain a little longer and let Love have His way with me from the very beginning. I would have let Him lead instead of my fearful and panicked thoughts. I would’ve trusted He loved her more than we did, that He had good plans for our future, and He could bring great good from great suffering.

She is still having grand mal seizures most days, but we just celebrated Mary Addison’s 30th birthday. We rented out an Irish Pub and put the word out that Mary Addison didn’t want presents but friends to celebrate with her. The place was packed with people—young and old, from all walks of life, in a wide variety of colors. Babysitters from 25 years ago, school bus drivers, teachers, college kids, therapists, and neighbors.

As I looked around at all the joy, I realized Love had been in charge all along.

Mary Tutterow is the author of The Heart of the Caregiver® study series—written for anyone feeling overwhelmed by the responsibilities and emotions of caring for someone with disabilities, chronic illness, or age-related issues. The most recent addition to the series is The Peaceful Caregiver™. Mary and her husband Winn have two adult children and live in Mt. Pleasant, SC. Their daughter, Mary Addison, has cognitive and physical challenges and an active seizure disorder. Together they also cared for Winn’s mother through cancer and dementia.

Mary and Winn founded http://www.healingfarms.com 20 years ago to provide community participation for young adults with disabilities transitioning out of high school into joblessness and isolation. A former anchorwoman and marketing executive, Mary now leads online and in person small groups for parents and caregivers—as well as workshops, webinars, and retreats. Mary has been featured on numerous podcasts, vlogs, and talk shows.

Websites: www.theheartofthecaregiver.com; www.

MaryTutterow.com

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PARENTAL SUPPORT

Behavior Issues:

A Four-Step Plan to De-Stressing Your Household

By Cindy Fisher, EdD NO MATTER WHOM YOU TALK TO, GETTING THROUGH THE PANDEMIC AND BEYOND HAS BEEN A CHALLENGE. SCHEDULE CHANGES, ONLINE SCHOOL, CANCELED PLANS, ISOLATION, ILLNESS, AND DEATH TURNED DAILY LIVES UPSIDE DOWN. THE LOSS OF A FAMILIAR ROUTINE CAN BE EXTRA HARD TO HANDLE WHEN CHILDREN HAVE A COGNITIVE DISABILITY. THEY MAY HAVE A BASIC UNDERSTANDING OF WHAT IS HAPPENING BUT ARE MISSING THE COPING SKILLS TO ADAPT. AS MORE AND MORE FAMILIES REACHED OUT FOR HELP, THEY OFTEN FOUND THEMSELVES PLACED ON WAITING LISTS. WHAT NOW?

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One approach is to conduct a functional behavior assessment.

This results in an understanding of why a behavior is occurring and a plan to prevent it from occurring at the same rate. While the focus of this article is on parents, school-related guidelines can be found on the website of the Center on Positive Behavioral Interventions & Supports: Tier 3 Brief Functional Behavior Assessment (FBA) Guide.

Take some notes on your child’s behavior

First, keep a log of your child’s behavior so you can look for patterns. Points of concern may not be obvious as they occur, so writing them down will help you reflect on what is happening. This can be a lot of work, and dealing with your child’s behavior at the moment also requires a lot of time and effort. If you’d rather not write it all down, you can try to analyze what might be happening in real-time.

Take a sheet of paper and turn it sideways. Make some column headings: day, day of the week, time, where, who, before, description of behavior, and after. We’re basically looking for who, what, where, when, and why.

Without your child noticing, take notes when a behavior occurs. You don’t have to fill in every column. If several behaviors occur on one day, for example, you don’t have to write the day each time.

•

•

• •

•

•

•

Day: Start a new line for each behavior so you can look back at each one individually. If several behaviors are listed on one day, you’ll know it was a stressful day.

You’ll also be able to tell if it happens more often on a certain day of the week.

Time: This will help you see patterns, such as morning or afternoon, before or after mealtime, or a certain number of hours after the medication is taken. If it’s a tantrum, note the length of the tantrum. You can use this to measure progress later.

Where: Where was the child? At the grocery store, in the car, in the bathroom?

Who: Who was involved or in the area? Were there observers? This can help you determine if there was some embarrassment or other emotion that played into the behavior.

Before: Write what happened just before the behavior occurred. Was a request denied? Did a sibling laugh?

Was the family watching TV? Was it bath time? What activity was taking place?

Behavior: Be brief. It’s tempting to write a lot, but just write enough so you can look for a relationship between the behavior and what happened before and after the behavior. If you write too much, you will have a hard time sorting it all out.

After: Write down your (or others’) response; examples include: Ignored, Time Out, Loss of Privilege, Called Other Parent, Outside Resource, Redirected to Another Activity, Hug, Conversation. Next, write down what happened in that immediate moment. This will

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help you analyze whether the response might be affecting whether the behavior occurs again or changes intensity.

Misbehavior is often a result of an individual trying to get a need met. That need is often to avoid or get something. They may be avoiding a stressful situation or avoiding something that feels bad. On the other hand, they may want attention, an object, or an activity.

Keep making notes until you feel as though you’ve got a good picture of the behavior. If you are writing the same information over and over, you have enough information to begin to analyze it.

Analyze your notes

Look through each column and find the pattern in that column. Consider writing the number of behaviors recorded each day on a calendar to see if the behavior happened more often on a particular day of the week. If you see a pattern, write it down. Continue going through each column, making a note of what is mentioned most often. Then try to write a sentence or two summing it up. Be sure to include when and where it happens, who is involved, and what seems to be a predictor of the behavior. Consider what happened after a behavior to see if the behavior increased or decreased after a particular response. Write a story about the behavior, so someone else would understand.

For the next part, you might share your notes with another person on your child’s support team: a spouse, a grandparent, a teacher, a social worker, or a good friend. What do you think your child is trying to avoid or get? It could be more than one thing. When you think you have that figured out, write it down. Be open to changing it in a future step when you talk with your child.

Make a plan

Now it’s time to think about preventing the behavior from occurring or slowing it down so it happens less often. What is the replacement behavior that you want to see? Think about what you want your child to DO, not what you want them to STOP doing. For example, suppose a child wants their phone when it’s time for dinner. In that case, the replacement behavior might be “comes to the table for dinner when asked,” “leaves the phone in its safe place when it’s time for dinner,” “talks to family members during dinner,” or a combination of all three (Greene, 2014).

Now that you have a few replacement behaviors in mind, you are ready to solve some problems. Pick a time when you and your child are relaxed and ready for a conversation. You will be able to develop a better solution together once you understand more about it. As Ross Greene instructs, describe the behavior you are seeing and ask them questions, such as how they were feeling or what they were thinking at the moment. Some key phrases are: “I noticed” and “I wonder.” Be

PARENTAL SUPPORT

open-minded and non-judgmental. Explain how the behavior creates a problem for you (and others), and say you want to work something out that you can support. For example, your child might want to talk to someone on their phone, which could lead to an agreement on a schedule for texting. If you work this out with other parents, even better.

This conversation may not be successful the first time you try it. Keep at it, and let your child know you value their opinion.

At the same time, maintain your adult boundaries; you need a solution that works for the adults, too. Talk about what will happen when you see the problem behavior and what will happen when the replacement skills are used. Before you speak, be very clear in your mind that you will follow through on what you offer up. Don’t make threats or empty promises. Make a plan and write it down together. Post it on the refrigerator so you have it for easy reference.

As you consider replacement behaviors, think about healthy ways for the child to get what they want. Are they attention-seeking? Help them find ways to get attention, perhaps by learning some jokes or magic tricks to show at a preset time.

Do they complain about not ever getting their way? Schedule a time or activity when they can make the decisions, such as what to have for dinner or what game you will play together.

Give choices when you can.

Greene, R.W. (2014) Lost at school: Why our kids with behavioral challenges are falling through the cracks and how we can help them.

Scribner; New York.

Dr. Cindy Fisher has decades of experience as a special educator at all levels of education, from kindergarten to post-high school.

Currently, she is an adjunct instructor, teaching college students going into special education. While working with 18- to 21-year-olds, she noticed students experienced a great deal of stress trying to solve everyday problems. She wanted her students to leave the school system with a tool that would help them make decisions and function independently as much as possible. To this end, she created an app called Smart Steps® Mobile with a related web portal, www.smartsteps4me.com, that allows users to customize the app.

Website: https://www.smartsteps4me.com/ LinkedIn: https://www.linkedin.com/in/cindy-fisher-1470851a/ Facebook: https://www.facebook.com/SmartSteps4me Email: connect@smartsteps4me.com

Other variables are worth careful consideration. It’s entirely possible there are sensory, social, health, or medical issues at play. Be ready to make adjustments to your family schedule or routines. Seek out experts who can support you. Know things can get better when you approach behavior with curiosity, an open mind, and a realization that behavior is communication about an unmet need.

stressed?

Implement the plan

need advice?

Finally, it’s time to implement the plan you have worked out.

Start with some teaching. For example, model the process for ending a text chat and putting the phone in its safe spot. Then have your child practice. Do this at a time that is not stressful and keep it light-hearted. This will set the tone for a positive relationship and future success in working together.

It’s normal for things to worsen at first as your child tests out the plan. They may want to know if you mean it, or they might just be trying it out to see how it works. Your job is to be their safety net. By enforcing the plan, you are letting them know you can be counted on to keep them safe. You haven’t given up on them, and you know they can do it. Above all, take care of yourself. Talk to others. Get support and know that you are not alone.

Sources Center on Positive Behavioral Supports & Interventions (Jan 2022) Tier 3 brief Functional Behavior Assessment (FBA) Guide. https://www.pbis.org/resource/tier-3-brieffunctional-behavior-assessment-fba-guide

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THERAPIES AND TREATMENTS

Imagine an effective therapeutic strategy that addresses many areas of need—sensory, neuromotor, physical, cognitive, and social-emotional—that takes place in the fresh air and sunshine while being fun and engaging. It may sound like a tall order to fill, but this strategy does exist!

Hippotherapy, as described by the American Hippotherapy Association (AHA), is an evidence-based treatment strategy utilized by an occupational therapist (OT), physical therapist (PT), or speech-language pathologist (SLP) with specific training that purposefully facilitates the dynamic movement of the horse and skillfully applies that movement to help achieve functional independence. It accompanies a plan of care for individuals who have rehabilitative goals and benefits from occupational, physical, and/or speech-language pathology interventions. Incorporating hippotherapy as part of a treatment plan can help facilitate the achievement of functional goals. In accordance with the AHA, participants in hippotherapy are referred to as patients; hence, that is the terminology that will be used in this article.

The therapeutic use of the horse’s movement extends back as early as 460 BC when Hippocrates referenced the horse in a book chapter on natural exercise. In the 1700s, Tissot wrote about the medical value of the horse’s walk. In the 1970s, the use of the horse in therapeutic interventions in the United States gained traction when PTs began utilizing hippothera-

Nature Notes

Hippotherapy: It’s Way More Than Riding a Horse

By Laura Ryan, OTD, OTR/L

I am pleased to turn this column over to occupational therapist Laura Ryan, who prepared a wonderful article for this issue.

—Amy Wagenfeld, PhD, OTR/L, SCEM, EDAC, FAOTA

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THERAPIES AND TREATMENTS

py in their treatments. It became a formalized therapeutic intervention in 1987 with the development of a hippotherapy curriculum (American Hippotherapy Association, 2020). This early curriculum focused on physical vulnerabilities by using the dynamic movement of the horse and manipulating that movement to increase strength and balance.

The impact of the horse’s movement on the physical system is perhaps, the most obvious. Simply sitting astride a horse involves the whole body. Engagement of the trunk muscles, including the abdomen, mid and upper back, and neck, to stabilize the head is facilitated. Trunk stabilization is crucial when engaging in any activity with the legs and arms, as those limbs must have a sturdy base of support from which to move.

Therefore, increasing trunk strength will start a positive chain of events—it will improve standing balance, thereby improving mobility, the use of the arms during play, and stabilizing and coordinating the neck and facial muscles to produce speech. Additionally, the specific leg muscles used to stand and move about are strengthened as they are engaged when on the moving horse.

The forward-thrusting motion that occurs when the horse walks (known as impulsion) challenges both the front and back trunk and neck muscles, as the rider must tighten those muscles to maintain balance. Manipulating this natural forward movement by changing the horse’s speed or choosing a horse that naturally has more or less impulsion are ways to grade balance challenges. Moreover, facing forward or backward while astride the horse can focus the level of challenge to either the front trunk muscles or back trunk muscles.

Current research finds hippotherapy to be beneficial in addressing many other areas of function beyond physical, including neurological and sensory (e.g., DeGutis, 2003; del Rosario-Montejo et al., 2015 Gewartz, 2003; Stern & Chur-Hansen, 2019). The horse’s musculoskeletal system moves in a three-dimensional pattern similar to that of a human. Sitting astride a horse while the horse is walking closely mimics the neurological motor patterns humans use to walk, and these movement patterns can then be applied to the patient’s walk-

Current research finds hippotherapy to be beneficial in addressing many other areas of function beyond physical, including neurological and sensory.”

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ing. From a sensory perspective, sitting astride a horse with a collected and coordinated walk can provide organized input through deep pressure into the musculoskeletal system and smooth visual input, which can impact sensory regulation.

Riding a horse with an organized, rhythmic, and modulated nervous system has a regulating impact on the patient’s nervous system. Studies have found that the horse’s sensory system and its rider’s sensory system become linked, with the rider experiencing a more regulated heartbeat (e.g., Cabiddu et al., 2016; Gehrke, 2010; Hockenhull, 2015). As when addressing physical needs, the type of movement or the type of horse can be chosen to meet the patient’s sensory needs. For example, for a child with a dampened sensory profile, selecting a smaller horse or pony that naturally walks at a quicker pace will give alerting input. Conversely, for a patient with a heightened sensory profile, a horse with a slower, more plodding gait or a gait with impactful, heavy footfalls will provide deep input into the joints of the body, which may have a calming effect on the sensory system. Moving the horse from a walk to a slow trot can promote smoother transitions to different types of sensory input.

THERAPIES AND TREATMENTS

Although not technically considered hippotherapy, being in a multi-sensory environment can also bring about many therapeutic opportunities. For example, being outside can provide therapeutic benefits by being surrounded by green space and the softly supportive patterns of nature. Riding through the seasons provides an orientation to the passing of time and offers a rich sensory environment that supports social engagement and conversation. Feeling the cold temperatures in winter can be invigorating, hearing the horse’s snorting can be amusing, seeing the distinct contrast of a bright blue sky with puffy white clouds can be soothing, smelling the distinct horsey smell can be a source of curiosity, and feeling the horse’s scratchy mane and contrasting soft coat can be grounding.

It is essential to understand the differentiation between adaptive riding and hippotherapy. Hippotherapy is a treatment tool used by licensed rehabilitative professionals such as OT, PT, and SLPs, who specifically and skillfully use the horse’s movement to achieve functional therapeutic goals. Unlike hippotherapy, adaptive riding is typically not led by a licensed rehabilitative professional and, while there are benefits, does not offer the same level of expertise and attention toward functional goals. As with any therapeutic intervention, it is crucial to educate yourself on the facility, the horses, and the rehabilitative professionals (OT, PT, and SLP) who use equine movement as a treatment tool. If you are interested in what OT, PT, or SLP sessions using hippotherapy as a treatment strategy can do for your loved one, please refer to the American Hippotherapy Association website. Happy trails!

horses and humans undertaking an in-hand task. Anthrozoös, 28(3), 501-511. https://doi.org/ 10.1080/08927936.2015.1052284 Stern, C., & Chur&Hansen, A. (2019). An umbrella review of the evidence for equine-assisted interventions. Australian Journal of Psychology, 71(4), 361–374. https://doi.org/10.1111/ajpy.12246

Laura Ryan, OTD, OTR/L, is an occupational therapist who grew up on a large horse farm in Massachusetts.

She has been practicing for 30+ years and has been using hippotherapy as a treatment tool since 2001. She enjoys seeing the happiness and progress each person has achieved through the therapeutic impact of the horse. Laura has also developed a program for breast cancer rehabilitation using therapeutic input from the horse.

Email: hooves4healingot@gmail.com

References American Hippotherapy Association. (2020). The history of hippotherapy and the growth of AHA, Inc. https://www. americanhippotherapyassociation.org/our-history Cabiddu, R, Borghi-Silva, A, Trimer, et al. (2016). Hippotherapy acute impact on heart rate variability non-linear dynamics in neurological disorders. Physiology & Behavior, 15(159), 88-94. doi: 10.1016/j. physbeh.2016.03.012.

DeGutis, D.L. (2003). Hippotherapy aids children with sensory and motor issues. Exceptional Parent, 33(11), 55-7. del Rosario-Montejo, O., Molina-Rueda, F., Muñoz-Lasa, S., & AlguacilDiego, I. M. (2015). Effectiveness of equine therapy in children with psychomotor impairment. Neurología, 30(7), 425–32. https://doi. org/10.1016/j.nrleng.2013.12.017 Gehrke, E. K. (2010). The horse-human heat connection. Results of studies using heart rate variability. NARHA/s Strides, 20-23.

Gewartz, R. (2003). The use of sensory integration in equine-assisted therapy: An occupational therapy perspective. Occupational Therapy Now, 5(1), 8-10.

Hockenhull, J., Young, T.J., Redgate, S.E., & Birke, L. (2015). Exploring synchronicity in the heart rates of familiar and unfamiliar pairs of

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