Exceptional Needs Today ISSUE 14

Exceptional Needs Issue 14

T O D AY

SAMANTHA ELS:

EXPLORING THE WORLD WHEN THERE ARE DIFFERENT ABILITIES

WAYS MY AUTISTIC BROTHER HAS WONDERFULLY SHAPED MY LIFE THE INTERSECTION OF OBESITY AND AUTISM

BUILDING RELATIONSHIPS Creating Emotionally Safe Spaces for Children

Discussing Fair and Equal Inheritance

TH ED BU ANG LLY ERS ING OF

PREPARING FOR YOUR NEURODIVERGENT CHILD’S TRANSITION TO ADULTHOOD

A Special Needs Plan can help answer these questions: 1. Who is going to take care of your child after you are gone and where will they live?

2. How much will that care cost and how are you going to pay for that care?

3. Do you have a special needs trust and do you know how much money you will need in it? How are you going to fund it? How are the funding instruments taxed when you die?

4. What government benefits are available to your child and how do you apply for them?

5. What is the Medicaid waiver and how do you apply for it?

6. How will you communicate your plan to family members?

www.ASpecialNeedsPlan.com Phone (704) 326-7910 Securities and investment advisory services offered through qualified registered representatives of MML Investors Services, LLC, Member SIPC. 4350 Congress Street, Suite 300, Charlotte, NC 28209. 704-557-9600. A Special Needs Plan is not a subsidiary or affiliate of MML Investors Services, LLC or its affiliated companies.

Contents

Issue 14 THE IMPACT OF SOCIAL STIGMA WHEN THERE ARE LEARNING DIFFERENCES

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John Civita, MS Ed Find out how social stigma can negatively influence people with different abilities and their families in various aspects of their lives.

THE FRIENDSHIP & DATING DUO WAYS YOU CAN BE MORE SOCIAL AND LESS LONELY EVEN IF YOU’RE NOT AN EXTROVERT

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Jeremy and Ilana Hamburgh Recognize the classic social advice to “Just put yourself out there” doesn’t work for most people, and why.

SAFETY GOALS WITH NICOLE THE DANGERS OF BULLYING AND WHY WE SHOULD MAKE A CHANGE

07 SAMANTHA ELS: WAYS MY AUTISTIC BROTHER HAS WONDERFULLY SHAPED MY LIFE

26

Samantha Els, BS Learn how a woman’s self-awareness and interest in sibling science developed through her relationship with her autistic brother.

WHAT PRESUMED INCOMPETENCE AND EXCLUSION FEELS LIKE

12 EXCEPTIONAL ADVICE FROM MESHELL EXPLORING THE WORLD WHEN THERE ARE DIFFERENT ABILITIES

Nicole Moehring Discover the many forms bullying can take, the long-term consequences, and the most effective methods to assist vulnerable children.

29

Meshell Baylor, MHS Discover tips and resources for ensuring enjoyable family trips.

Nate Trainor Discover how one man with Joubert syndrome’s childhood diagnosis hindered his potential by priming others to assume mental incapability.

16

ADJUSTING HOW WE THINK ABOUT AUTISM SEE MY STRENGTHS FIRST

RECOGNIZING THE NEED AS CAREGIVERS AND EDUCATORS TO REFLECT AND REGROUP

Karen Kaplan, MS Remember to acknowledge and celebrate unique skills and encourage others to do the same.

Dr. Chris Abildgaard, EdD, NCSP, LPC, NCC Take time to implement emotional regulation and introspection, especially when your guiding role feels overwhelming.

36 EXCEPTIONAL BOOKS THE HAPPY CLAM

Learn how to incorporate psychological and philosophical discoveries into your life, aiming for happiness in multiple aspects, from Rosemary A. Schmidt’s inspiring collection of her own experiences and research.

38 CREATING EMOTIONALLY SAFE SPACES FOR CHILDREN WHEN THERE ARE DIFFERENT ABILITIES

4 | Exceptional Needs Today | Issue 14

Ginger Healy, MSW, LCSW Acquire strategies for aiding your child in cultivating emotional regulation by establishing safe spaces.

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42 SHAPING OUR FUTURE DADDY’S STITCHES: SUPPORTING CHILDREN WHEN CAREGIVERS NEED MEDICAL ATTENTION Rose Adams, OTD, OTR/L Ensure that those you care for are well-prepared to receive adequate support and develop action plans for when you need medical care.

46 EIGHT BENEFITS OF AN EMOTIONAL SUPPORT ANIMAL Ron Sandison, MDiv. Discover how emotional support animals can fortify families on multiple levels.

dismissal or lack of spectrum-specific care from doctors who aren’t sufficiently familiar with the diagnosis.

49 AUTISM, ALL GROWN UP BUILDING PATHWAYS FROM ABA TREATMENT TO THE WORKPLACE Jagmeet Sangha, BCBA Uncover two approaches to aiding people who lose access to services that help build and maintain skills essential for the workplace.

53 ALL THINGS OT STABILITY BEFORE MOBILITY: THE BUILDING BLOCKS OF HANDWRITING Laura A. Ryan, OT, OTR, OTD Discover how the hand develops fine motor skills essential for acquiring proficient handwriting abilities.

58 PREPARING FOR YOUR NEURODIVERGENT CHILD’S TRANSITION TO ADULTHOOD Jan Stewart Learn practical ways to plan for the transition to adulthood when dealing with diverse abilities.

Exceptional Needs

Kate C. Wilde Uncover the key behind convincing young people to appreciate handwashing and brushing their teeth.

Our mission is to educate, support, and energize families, caregivers, educators, and professionals while preparing all families for a healthy future.

64 THE INTERSECTION OF OBESITY AND AUTISM Carol Tatom, BA.HSE, CHW Understand why obesity and autism are often comorbid and the unique experiences of those affected.

exceptionalneedstoday.com

Karen Kaplan, MS Improve the communication skills of your literal-minded loved ones by encouraging mental image associations and practice.

Founder/Publisher Amy KD Tobik Lone Heron Publishing, LLC

81 NATURE NOTES ALTERING AN ENVIRONMENT TO PROMOTE HEALING THROUGH SENSORY INPUT Amy Wagenfeld, PhD, OTR/L, SCEM, EDAC, FAOTA Incorporate aspects of the nine characteristics of a healing space into your outdoor/indoor area to promote well-being.

85 HOW CAN I HELP MY CHILD WHO IS DYSLEXIC? Dr. Ronald I. Malcolm, EdD Learn 10 approaches for facilitating your dyslexic child’s learning and development.

THE GREY AREA OF AUTISTIC 68 CHILDREN WITH LOW SUPPORT NEEDS JC Ellinger Consider how autistic people with low support needs may be vulnerable to

LET'S WORK TOGETHER

ADVERTISING@EXCEPTIONALNEEDSTODAY.COM WWW.EXCEPTIONALNEEDSTODAY.COM EXCEPTIONAL NEEDS TODAY

T O D AY

75 PICTURE THAT: UNDERSTANDING LANGUAGE THROUGH VISUALIZATION

Carli Haskovec, MA, Ed.S. Discover the effects of school closures on childhood development and explore potential countermeasures.

Ryan F. Platt, MBA, ChFC, ChSNC, CFBS Ensure you understand how to distribute an inheritance fairly, especially when some exceptional needs family members may require more monetary support.

TODAY

71 KATE MAKES IT GREAT! MAKE IT FUN! LESSONS IN PERSONAL HYGIENE WHEN THERE ARE DIFFERENT ABILITIES

79 THE IMPORTANCE OF POSTPANDEMIC SOCIAL SKILLS INSTRUCTION

62 FINANCIAL FOCUS DISCUSSING FAIR AND EQUAL INHERITANCE WHEN THERE ARE SPECIAL NEEDS

EXCEPTIONAL NEEDS

Magazine Staff Editor in Chief: Amy KD Tobik, BA Editorial Assistant: Margo Marie McManus, BS Content Writer & Copyeditor: Derik Hicks Social Media: Dione Sabella, MS Graphic Designer: Patrick Gwayi, HND, MA 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 advertising@exceptionalneedstoday.com submissions@exceptionalneedstoday.com editorial@exceptionalneedstoday.com

Cover photo credits Barry Kinsella Photography

Exceptional Needs Today is published four times a year and distributed digitally to readers for free by Lone Heron Publishing.

Disclaimer: Advertised businesses and products are not endorsed or guaranteed

by Exceptional Needs Today, its writers, or employees. Always follow medical advice from your physician.

Exceptional Needs Today | Issue 14 | 5

From the Editor’s Desk BUILDING RELATIONSHIPS One of my favorite aspects of publishing Exceptional Needs Today magazine is the collaborative spirit within our extraordinary community. We encompass parents, siblings, neighbors, educators, therapists, doctors, financial planners, attorneys, and self-advocates. Our unique and valuable stories bring us together.

During a recent chat with Samantha Els, BS, cofounder of Sam’s Sibs Stick Together—an initiative designed to provide support and accessible research to siblings of people on the autism spectrum—we discussed how our unique experiences shape who we become. Samantha and her brother, Ben, are children of Liezl and professional golfer Ernie Els, founders of the Els Center of Excellence in Florida. She credits her sibling experience for teaching her the delicate art of balancing responsibilities and emotions while recognizing the immense impact of mental health on the sibling dynamic. Best of all, perhaps, they have been gifted an unbreakable bond. Read her piece, Ways My Autistic Brother Has Wonderfully Shaped My Life, to learn more about Samantha and Ben’s loving sibling journey.

Building relationships can be tricky sometimes, especially when the classic, well-meaning “just put yourself out there” advice doesn’t work. Friendship & Dating Duo columnists Jeremy and Ilana Hamburgh understand the importance of finding your people, especially when they moved 3,000 miles from their friends and family. For exclusive tips from Jeremy and Ilana, read their article, Ways You Can Be More Social and Less Lonely Even If You’re Not an Extrovert.

Another of our regular columnists, Nicole Moehring of Safety Goals with Nicole, has tackled the ever-important topic of bullying in her piece, The Dangers of Bullying and Why We Should Make A Change. Interestingly, Nicole explains how bullying not only harms the victim but can also amplify aggressive behaviors in the bully, increasing the risk of engaging in criminal behavior and hindering relationships down the line.

6 | Exceptional Needs Today | Issue 14

In addition to the professional articles we publish, we value the narratives we receive. Several writers have shared personal stories, including advocate Nate Trainor, who uses supported typing to communicate. In his piece, What Presumed Incompetence and Exclusion Feels Like, Nate discusses how his Joubert syndrome diagnosis during childhood may have primed others to assume mental incapability. Today, Nate is a passionate inclusion advocate, captivating presenter, volunteer, and accomplished book author.

We are thrilled with the impressive array of topics covered in this issue, including creating emotionally safe spaces for children, ways to build pathways from ABA treatment to the workplace, and tips and resources for keeping family trips enjoyable. We also offer expert guidance on implementing emotional regulation and introspection, the impact of social stigma surrounding learning differences, the intersection of obesity and autism, ways to help a dyslexic child, and so much more.

A special thank you to our contributors, advertisers, and subscribers who continually support and play an integral role in making our award-winning magazine successful. Let’s continue to appreciate, support, and empower one another.

Best,

Amy KD Tobik

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

PLEASE JOIN OUR EXCEPTIONAL COMMUNITY

MY WORD

Samantha Els: Ways My Autistic Brother Has Wonderfully Shaped My Life

By Samantha Els, BS

Exceptional Needs Today | Issue 14 | 7

MY WORD

I

have assumed many roles and identities throughout my life, but above all, I am Ben’s Big Sister. This title has been my favorite for the past two decades, as it encapsulates the deep bond and unique journey I share with my brother. Our lives have been shaped by navigating his autism, my quirks, and our collective experiences. From misunderstandings to self-discovery, from imbalances to unbreakable bonds, this is my window into life as a Sib. My introduction to autism began as a misunderstanding. In the language of young children, “autistic” easily becomes “artistic,” leading my lower school friends to believe I thought Ben was the next Picasso. This misconception persisted for years, highlighting a point I often emphasize to parents: autism is so deeply ingrained in my life that I cannot pinpoint its exact “arrival.” It has always been a part of our lives, seamlessly woven into our daily routines and interactions. While my parents experienced a significant shift when Ben received his diagnosis, my life remained unchanged. There was no sudden upheaval or disruption; it was simply another day with my little brother, just as I had always known him. Even after two decades, a degree from Stanford University, and countless years of “on the job” experience, I can confidently say I am an expert in only one boy’s autism.

Being a Sib means constantly coming second. It entails taking on various roles like parent, caretaker, friend, and sometimes even scapegoat. At times, it can feel like being left behind.

However, it also entails embodying qualities such as honesty, empathy, care, and unwavering strength. When traveling on tour with my father during his golf tournaments, this meant I slept on a pull-out couch while Ben got his own room and bed.

When Ben broke his iPad for the fourth time during a tantrum, being a Sib meant it was fixed immediately, but my request for a new laptop took a year for my parents to fulfill.

Looking back on my life, I realize there were imbalances in these experiences. As an adult, I wish I had recognized this earlier. I now understand I wasn’t a ‘bad’ sister for fighting with my brother or feeling bone tired after days or weeks of ensuring his well-being. I now see my parents were adapting as best they could to a vastly different set of needs. My report cards were coming back with terms like “gifted” or “easily bored,” while Ben’s school experience was filled with Individualized Education Program (IEP) meetings. These responsibilities fundamentally transformed me as a person, shaping my character and outlook on life.

Despite the toll it has taken on me—including a laundry list of diagnoses that rival even my brother’s—I have come to view these changes as beautiful assets. Our shared genetics have made our needs strikingly similar. We both struggle in crowds, become utterly drained when our social batteries are depleted, despise clothing tags, and possess an innate ability to vibe-check people. Sibling science (such as the work done at UCLA by Nicole Rosen and her team looking at the longitudinal impacts of the sibling relationship) has captivated my

8 | Exceptional Needs Today | Issue 14

MY WORD

attention. I aim to reveal the undeniable similarities between siblings and debunk the notion of an “unaffected” sibling.

The desire to be perfect can easily lead down a dark path. For me, it manifested as an overwhelming need to be everything for my parents, despite their constant reassurance that I was enough just as myself. I felt they had missed out on the conventional experience of having a son, so I took it upon myself to fill that void and more. I became multifaceted, striving to excel in every aspect of my life simultaneously. However, this pursuit often came at the cost of my mental and physical health. I spent weeks reminding myself to eat, taking hours to fall asleep, and generally focusing only on outcomes instead of processes. Now, as a 24-year-old with a Bachelor of Science degree from one of the top universities in the United States, a professional athlete, and an aspiring advocate and healthcare worker, I recognize these achievements are merely facets of my identity that I constructed in response to my unique experiences.

My college years presented their own set of challenges, further exacerbated by the pandemic. During this time, my project,

Sam’s Sibs Stick Together, was born—a collaboration between my parents’ Els for Autism Foundation and The Autism Science Foundation. This initiative aims to create a safe space for siblings to come together and share their experiences, no matter how dark or difficult they may be. In our first meeting, I experienced a profound realization: it was the first time I had ever conversed with someone who truly understood and shared my experience and identity. Since then, this initiative has evolved into a platform for researchers, siblings, family members, and anyone interested in neurodiversity’s effect on families to interact and discuss current findings in sibling research while also shaping the future of this field. Siblings are an often overlooked and underserved group within the broader autism community, and I have had the privilege of developing a deep understanding of their experiences in recent years.

To all siblings out there, I want to emphasize that there will be bad days filled with shame, inadequacy, and the overwhelming feeling that the world’s weight rests solely on your shoulders. Sometimes, it truly does. As a pillar of your family, you possess a unique ability to understand those around you. You shoulder multiple roles and responsibilities simultaneously.

Exceptional Needs Today | Issue 14 | 9

MY WORD

It is crucial to remember that having needs does not equate to failure.

provides me with the understanding I need without words, reaffirming that we are figuring this out together.

When I find myself at my lowest point, it is my brother I want the most. He has an uncanny ability to provide the exact type of support I need. While Ben doesn’t hug everyone, he somehow knows when I need a “big squish.” We often lie in his room before bedtime, and he holds me tightly, at times resting his entire bodyweight on my head. During those moments, we uncontrollably giggle until it’s time to put him to bed.

Samantha, better known as Sam Els, BS, is the cofounder of Sam’s Sibs Stick Together: an initiative dedicated to providing support and accessible research to siblings of people on the autism spectrum. Sam graduated from Stanford University with a BS in human biology focusing on brain health and health policy. She was awarded the 2022 Autism Science Foundation’s Caryn Schwartzman Spirit Award for advocacy, along with the late Suzanne Wright, cofounder of Autism Speaks. Sam is pursuing her goal of playing rugby for the South African national team.

Navigating life as a sibling of someone with autism is a journey of self-discovery, resilience, and growth. As a Sib, I have learned the delicate art of balancing responsibilities and emotions, while recognizing the immense impact of mental health on the sibling dynamic. Despite facing similar struggles due to our shared genetics, these challenges have also gifted us an unbreakable bond. Together, we confront obstacles with love and support, reminding me that as a sibling, I embody everything at once. And in the darkest moments, it is my brother who

…autism is so deeply ingrained in my life that I cannot pinpoint its exact “arrival.”

It has always been a part of our lives, seamlessly woven into our daily routines and interactions.”

10 | Exceptional Needs Today | Issue 14

Website and compiled resources: www.samssibssticktogether.com

EXCEPTIONAL ADVICE FROM

MESHELL

Exploring the World When There Are Different Abilities

By Meshell Baylor, MHS “Traveling—It leaves you speechless, then turns you into a storyteller.”

—Ibn Battuta

12 | Exceptional Needs Today | Issue 14

FAMILY SUPPORT

THERE IS NOTHING MORE PRECIOUS THAN THE MEMORIES YOU SHARE WITH LOVED ONES WHILE TRAVELING IN THE AIR OR ON THE OPEN ROAD. WHETHER A CRUISE OR A TRAIN RIDE, TRAVELING IS ONE OF THE MOST EVENTFUL THINGS A FAMILY CAN DO TO BOND AND CONNECT. As a parent of an exceptional needs kid, embarking on a journey requires careful mental preparation. How can you ensure that your exceptional loved one’s needs and those of their siblings and relatives are accommodated? According to the Bureau of Transportation Statistics, an estimated 25.5 million Americans have disabilities that make traveling outside the home difficult. Some families struggle to secure accommodations that will make their differently abled child feel safe, while others worry if their loved ones with special needs can cope with the travel process (U.S. Department of Transportation, 2018).

I remember the first time our family took a road trip with Justin. As excited as we were to experience a new journey with our son, we were skeptical about traveling and our son’s safety. We wondered if he’d remain “OK” during the long drive and, upon reaching our destination, whether he could handle the number of people around and all the activities.

Road travel tips

Road-tripping with a differently abled loved one is a long process, but here are some techniques you can employ for a smoother journey.

1. Travel games Play educational travel games. Use some of those Individualized Education Program (IEP) goals to help your exceptional needs child have fun and learn. I-Spy games can be transformed into enjoyable learning activities that encourage searching for and identifying colors, cars, animals, new things, and more.

2. Singing If your child has preferred songs, encourage them to help you create a travel playlist of all their favorites to sing along with or listen to. If you don’t have time for that, Pandora offers a Disney station filled with the best theme songs from Disney movies. You can also explore KIDZ BOP, featuring children performing pop songs remade into kid-friendly music for all ages.

One of the most popular new kids’ music channels is Gracie’s Corner, a website and YouTube channel that provides fun, educational songs for children from diverse backgrounds.

It is a creative and engaging way for kids to learn, sing, and dance. You can use music to help your special needs loved one progress towards their IEP goals by building vocal and

motor skills. Remember, our goal as parents is to always empower, encourage, and inspire!

3. Toys If your child has a favorite toy, they might appreciate you helping create a playtime adventure featuring that toy and the places you’ll be visiting. At home and during therapy, we often see our children confined to tabletop activities, so use this travel time to be creative and change up playtime a bit.

Let toys explore in the car during your adventure.

4. Social stories Traveling in the car is an ideal time for social stories. Crayons are still a popular medium for all ages. Ask everyone to bring their favorite arts and crafts to draw pictures of what they see, such as mountains, hills, and passing cars. This is an excellent activity for building communication skills and generating dialogue. Social stories empower kids to answer “What did you do for the weekend/summer?” questions teachers often ask.

5. Electronics As much as family bonding time is special, there is nothing wrong with bringing tablets or portable handheld games.

Find excellent learning and travel games for them, such as word search puzzles. You can check sites like Starfall and PBS Kids for family-friendly games and stories.

When we took our son on his first airplane ride as a toddler, we were new parents learning how to navigate travel with our son and finding a way to make him comfortable. This topic is one that so many parents struggle to wrap their minds around, but there are organizations and parental techniques available to make travel comfortable for exceptional families.

Air travel tips

Air travel is different. Preparing your child to enter the airport, stand in line, check baggage, and wait for your flight is time-consuming and can be extremely overwhelming if your loved one with exceptional needs is not accustomed to that much noise, lighting, or crowds. How do you prepare your child to endure a busy airport? What can you do to make flying easier for someone who might find it uncomfortable? Consider bringing: 1. Earplugs Some differently abled people are sensitive to sounds.

High-quality earplugs could help them tune out excessive plane noise and feel more comfortable.

2. Sensory blanket A good sensory or weighted blanket is helpful for decompression and helping your child relax while in the air. If they are afraid of heights or sensitive to the motions of flying, deep pressure might help them feel more grounded and relaxed.

Exceptional Needs Today | Issue 14 | 13

FAMILY SUPPORT

3. Sketchpad and pencils Drawing can be fun if your child is into doodling or coloring.

You can help them draw a plane, clouds, or other passengers.

You can also bring coloring books and a small pack of crayons, markers, or colored pencils to keep them occupied.

4. Snacks Bringing your loved one’s favorite snacks for when you are waiting between flights or while in the air is a positive way to make them feel warm and comfortable. If your child prefers routines and familiarity, offering them something they snack on daily might help them feel like they are still at home.

If you still feel nervous about preparing for a trip, some programs aid and support travel for differently abled people.

Some of these travel programs are listed below. In closing, enjoy these new beginnings and embrace change! The road ahead is paved with good intentions; just keep going and ensure your exceptional loved one can see a whole new world.

References U.S. Department of Transportation. (2018, September 6). Travel patterns of American adults with disabilities. Bureau of Transportation Statistics. Retrieved April 8, 2023, from https://www.bts.gov/ newsroom/travel-patterns-american-adults-disabilities Resources Pandora http://www.pandora.com Gracie’s Corner https://graciescornertv.com KIDZ BOP http://kidzbop.com Starfall http://www.starfall.com The Arc: Wings For Autism https://thearc.org/our-initiatives/travel/ Autism on the Seas https://autismontheseas.com/ Meshell Baylor, MHS, is a mother of four children—two of whom are on the autism spectrum. She serves her community as a social worker and 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 local area while serving the special needs community.

Website: http://meshellbaylor.wixsite.com/website Instagram: https://instagram.com/imalittlebigb

14 | Exceptional Needs Today | Issue 14

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EMOTIONAL HEALTH

Recognizing the Need As Caregivers and Educators to Reflect and Regroup

By Dr. Chris Abildgaard, EdD, NCSP, LPC, NCC 16 | Exceptional Needs Today | Issue 14

EMOTIONAL HEALTH

I RECENTLY WAS IN A SESSION WITH A CLIENT AND HIS MOTHER. THE CLIENT IS 14 YEARS OLD, AND HIS MOTHER WAS SHARING THE SUCCESSES AND STRUGGLES OF THE WEEK. THIS YOUNG MAN HAS BEEN A CLIENT OF MINE FOR A WHILE, SO HE SAT THERE AND LISTENED TO HIS MOTHER PRAISE POSITIVE EVENTS AND BEHAVIORS, WHILE ALSO ADDRESSING AREAS SHE WOULD LIKE US TO STILL PROCESS AND WORK ON. At one point, the mother recounted an incident that occurred while they were walking on a local trail. As they conversed about a topic the young man often brought up, his mother began to lose interest in discussing it (a scenario I think we can all relate to). As her son’s voice escalated in frustration due to her lack of engagement, she eventually requested to switch the topic. However, he persisted, getting louder and louder.

Amidst the unfolding situation, the mother observed people jogging by, riding their bikes, and walking in pairs. Her son’s relentless persistence could trigger anyone. Approximately seven minutes into this episode of perseverative talk and growing agitation by her son, the mother disclosed to me she “lost it” in public. She felt embarrassed, sad, frustrated, and angry with herself for letting this happen. While looking at the pattern on my office rug, she admitted, “I know better. It was just a lot.”

While she was still looking down, I posed the question, “How is it that you know better? And know better about what?” This gave her pause and she looked up at me. Her son quickly interjected, “Why yell at me? She should not have yelled at me in public. That was terrible. She is supposed to not do that.”

I’m here to address the elephant in the room: parents, caregivers, teachers, and even therapists are all HUMAN. As humans, we will experience emotions. We will experience times where we keep our cool and times when we lose our heads. You’re not alone. It happens to all of us. What I have observed is that, as adults, we often neglect to practice what we are attempting to instill in our children, clients, and students. We don’t allow ourselves to be aware of what is happening with our emotions, thoughts, and behaviors. We neglect the chance to reflect on choices we can make, and we don’t shift our mindset during those moments when we know a shift in our thinking will be better for everyone in the situation.

So, I told the mom and her son, “Clearly, there were a lot of emotions happening here for the both of you. You mentioned you were walking on a trail, correct? Well, did you notice any benches?” My client blurted out, “Benches! Dr. Chris, we were walking. That is why we were on the trail. Why would we look for benches?” I nodded and replied, “Good question. Benches were created for people to take a break. To catch their breath.

To even take in the environment they are in. Benches allow people who may be tired to regroup and re-energize. It seems like in this situation, both you and Mom were a little ‘emotionally tired.’ Maybe it would have been a good idea to look for a bench.”

When do you look for a bench? What does your bench look like? Where is it? How does it feel to sit for a second on your bench and just be? During my interaction with this client and his mom, one of her comments was engaging. We understand there is a difference between cognitively “knowing” what to do and actually engaging in that behavior. Engaging in a behavior requires a blend of awareness, regulation, cognitive shifting, and reflection happening all at once.

While she might have indeed “known better,” she didn’t give herself a moment to integrate all those processes, which could have enabled her to “do” better. We all encounter moments when we feel guilt, embarrassment, or shame that we said or did the “wrong thing.” However, my proposition is that if we can recognize the need for our “emotional bench” sooner, we might decrease the frequency of those self-defeating emotions and moments.

So, what is the first step in realizing the need to look for that bench? It may start with a physiological response to a situation. Our bodies are remarkable in that they alert us when something isn’t right. It’s that sensation in your stomach, that weight you may feel when you are walking—like it’s harder to move your feet. It’s that feeling of your body temperature increasing. If you take a second to identify these physical signs (in research terms, this is known as introspection) and cultivate awareness when something has changed within you that’s a fantastic first step.

Once you recognize those signs, it’s time to reflect and formulate a plan. This might require time and space. I have often advised parents and caregivers that it’s OK to give themselves a “time out.” Uttering, “I need a break; I need a bench,” is alright.

Set a timer. Allow yourself a reflective pause so you are better prepared to engage in the next step, which is often the hardest: mindset.

During this mindset phase, you are determining what to do and how to think next. Is this a fight we are going to have, or is this something we need to adjust our beliefs or thoughts about? There are times when parents need to have a relatively “fixed” mindset when it comes to their children, especially around safety issues. There are also times when teachers can’t constantly adjust their mindset. Not adjusting one’s mindset is OK; it just goes back to how you communicate your mindset and thinking to others. To effectively communicate a fixed mindset, you must be well-regulated, mindful of the potential response, and be ready to address the “why” question.

Exceptional Needs Today | Issue 14 | 17

EMOTIONAL HEALTH

Often, we get so hung up on changing or modifying other’s behaviors that we forget to advocate for ourselves and communicate our needs to those around us.

we forget to advocate for ourselves and communicate our needs to those around us.

As a clinician, educator, and parent, I believe we need to be OK with looking for a bench now and then, acknowledging our needs, and not shying away from expressing those needs to others. Sometimes how we express things can be concrete, very black and white, but we must still express them. And at the same time, we need to be willing to just let some things go.

What we hang on to and what we get stuck on may not always contribute positively to our mental (or physical) health.

In these moments, you might find yourself reverting to physiological responses, especially when being challenged. Being challenged and questioned—being asked “why”—is something we as parents, educators, counselors should expect. We should expect younger people to question things we say or ask. I will publicly come out and say the era of young people just doing what older folks ask is no longer the social norm.

It’s not about respect as defined by, “You do what I say because I said it and you should respect the things I say.”

“Respect your elders” means something different today, but that doesn’t mean it’s completely obsolete. We want young people to express themselves and pose questions appropriately. We encourage conversations while also setting boundaries and expectations. I frequently tell clients, “We can have the conversation and I can hear your perspective, but it doesn’t mean I totally agree or do what you ask.” If we want to “regain our health” and become better at coping with stress, emotions, and our own behaviors as adults, we need to shift some of that mindset in our expectations of those of a younger age.

When you are sitting on that bench, reflect on your emotions and thoughts, and how to initiate a conversation about your emotions and what you require in that moment. Often, we get so hung up on changing or modifying other’s behaviors that Dr. Chris Abildgaard, EdD, NCSP, LPC, NCC, is the owner and director of the Social Learning Center (SLC), LLC, located in Cheshire, CT. Chris earned his Doctorate of Education in School Psychology from Loyola University Chicago, is a nationally certified school psychologist, and a licensed professional counselor with a specialization in autism spectrum disorders and neurodiverse learners. He holds a Graduate Certificate from the University of Massachusetts Lowell in Behavioral Interventions in Autism. In addition to his clinical, consultation, and supervision duties at the SLC, Chris teaches at several top universities in Connecticut. He has been an Adjunct Professor in the Psychology Department at the University of Hartford and is currently heavily involved as an Adjunct Professor in the Special Education Department at the University of St. Joseph (USJ). His duties at both universities include teaching, curriculum development, and supervision.

Website: www.sociallearningcenter.org/ Facebook: www.facebook.com/SocialLearningCenter Twitter: twitter.com/SLC545 LinkedIn: www.linkedin.com/in/chrisabildgaardslc/

18 | Exceptional Needs Today | Issue 14

EXCEPTIONAL ADVOCATE

The Impact of Social Stigma When There Are Learning Differences

By John Civita, MS Ed

IN CONTEMPORARY SOCIETY, THE PRESENCE OR IDENTIFICATION OF LEARNING DIFFERENCES OR NEURODIVERSITY IS ON THE RISE. THIS TREND IS ACCOMPANIED BY A GROWING UNDERSTANDING, ACCEPTANCE, AND AWARENESS. EARLY IDENTIFICATION THROUGH FORMAL EVALUATIONS IS MORE PREVALENT, LEADING TO BETTER ACCESS TO TAILORED SERVICES AND EDUCATIONAL PLACEMENTS TO SUPPORT VARIED INDIVIDUAL NEEDS. HOWEVER, AMIDST THIS PROGRESS, WHAT CAN BE OVERLOOKED IS THE PROFOUND IMPACT OF ASSOCIATED STIGMA ON AFFECTED INDIVIDUALS AND THEIR FAMILIES.

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EXCEPTIONAL ADVOCATE

R

egrettably, the stigma linked to learning differences or neurodiversity often perpetuates negative stereotypes and misconceptions, leading to significant challenges in decision-making and future outcomes. Ultimately, it diverts people from opportunities that would otherwise support their growth and development.

The impact on individuals:

The emotional and psychological effects of stigma are significant. Shame, embarrassment, and low self-esteem are common responses. Negative stereotypes can be internalized, leading to self-perceptions often characterized by feelings of inadequacy or difference compared to neurotypical peers.

Consequently, anxiety, depression, and other mental health challenges can ensue. These associated challenges can further contribute to social isolation, alienation, or exclusion.

People with learning differences or neurodivergent traits may face rejection, bullying, or discrimination, making it challenging to form and maintain relationships. This isolation can further exacerbate feelings of loneliness and impact overall social well-being; individuals often become less willing to take risks or assert themselves in social settings.

There are academic and professional difficulties as well. Stigma can hinder educational and career opportunities. People may face discrimination in academic settings, leading to limited access to resources, accommodations, or appropriate support.

In the workplace, stigma can result in biased judgments, unfair treatment, and fewer opportunities for career advancement.

Self-esteem and overall mental health are compromised, often leading to limited self-advocacy skills. Stigma can discourage people from seeking help, requesting accommodations, or disclosing their learning differences, neurodivergent traits, and needs out of fear of judgment or negative consequences.

Consequently, this can impede their ability to reach their full potential and access more opportunities.

Additionally, internalizing stereotypes can lead individuals to view themselves negatively through a deficit-based lens, curbing their belief in their capabilities and limiting confidence in their abilities to succeed academically, professionally, or personally. The impact of stigma on mental health cannot be overstated. The cumulative effects of negative experiences, societal judgment, and self-stigmatization can increase stress, anxiety, and depression. These mental health challenges may require additional support and intervention to manage them effectively.

a child’s learning disability diagnosis, though parents may experience a variety of other emotions. Caregivers may question their parenting skills or feel responsible for their child’s difficulties. Stigma compounds these negative feelings, making it harder for parents to seek help or access necessary resources for their children’s development.

Shame can be a factor as well. The realization that a child may not fit the norm or that their child’s life and future will look different from what the societal norms dictate as typical may cause a parent to feel uncomfortable at first. This discomfort might lead to social isolation, withdrawal, and feelings of judgment or exclusion from other parents or the wider community. Siblings of people with learning disabilities may also experience social stigmatization, as they can be subject to unfair comparisons or must navigate social situations differently.

Such isolation can hinder their acquisition of support as well.

Financial strain and other implications occur while raising a child with exceptional needs that “typical” families don’t experience or understand. Legal fees can be costly for specialized interventions. Therapy sessions and educational support add additional strain. Families may also face challenges finding appropriate educational institutions or services due to limited availability or lack of inclusivity, equity, and financial means, further impeding their child’s progress.

Combating and dispelling stigma:

Education and acceptance of learning differences and neurodivergent conditions are paramount in combating stigma. So, how can we be part of the solution?

•

Disseminate accurate information through workshops, seminars, and educational campaigns to dispel misconceptions and foster empathy.

•

Use person-first language to emphasize the person’s strengths and abilities rather than their disability. Instead of saying “A dyslexic person,” say, “A person with dyslexia.” Say, “My child is a person with autism,” instead of saying, “My child is autistic.”

•

Empowerment, resilience, and self-reflection encourage people with learning differences or neurodivergent conditions to develop self-advocacy skills and provide opportunities that develop the ability to confidently express their needs, rights, and boundaries in all settings.

The ability to actively participate in education, employment, and social interactions leads to better outcomes and success.

•

Peer support and mentoring established groups where people with similar experiences can connect and provide mutual support. This creates a sense of belonging, helps reduce isolation, and reinforces positive self-identity, self-reflection, advocacy, empathy, and acceptance.

•

Celebrate diversity. Emphasize the value of neurodiversity and the unique contributions people with learning differences or neurodivergent conditions bring to soci-

The impact on families:

The stigma surrounding learning disabilities also affects families. Parents and siblings often bear the emotional burden of stigma and face unique challenges in supporting their loved ones. Parental guilt and self-blame are common responses to

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EXCEPTIONAL ADVOCATE

ety. Recognizing individual achievements and highlighting success stories to challenge stereotypes and promote inclusivity is critical to increasing community awareness.

Ultimately, developing greater awareness promotes and advocates for appropriate educational, workplace, and community accommodations for equal opportunities. Collaboration with organizations, schools, employers, and community groups to create inclusive environments is essential. Equally important is providing professional development and training to educators, employers, and professionals, as is further advocacy for policy changes and legislation protecting the rights and well-being of individuals with learning differences or neurodivergent conditions. These steps will aid in ensuring a more inclusive and accommodating environment. By working together, we can break down barriers and dispel stigma.

References: Centers for Disease Control and Prevention. (2021, December 2). Data & Statistics on Autism Spectrum DisorderCDC. www.cdc.gov/ncbddd/ autism/data.html.

Centers for Disease Control and Prevention. (2022, May 16). Increase in Developmental Disabilities among Children in the United States.

CDC. www.cdc.gov/ncbddd/developmentaldisabilities/features/increase-in-developmental-disabilities.html.

Cortiella, C., Horowitz, S. H., & Braun, D. (2014) The State of Learning Disabilities: Facts, Trends and Emerging Issues (Third Edition-2014).

National Center for Learning Disabilities. www.ncld.org/wp-content/ uploads/2014/11/2014-State-of-LD.pdf.

Winston Preparatory School. (n.d.). Qualities of a sustainable and independent learner (QSIL). Retrieved December 30, 2022, from https:// www.winstonprep.edu/list-detail?pk=106884 J

John Civita, MS Ed, is the Director of Transitions Programming for the Winston Preparatory School. Winston Transitions is an extension of the Winston Preparatory School educational experience with NYC and San Francisco campuses. He is the founding director of Winston Transitions, a program for young adults aged 17-21+ with learning differences focused on building academic skills while developing life and work readiness. His experience includes 20 years of working in education, emphasizing language processing, nonverbal processing, and executive functioning difficulties. He is also experienced in supporting adults with learning differences and their families with a particular interest in sustainability, employment, goal setting, and problem-solving.

LinkedIn: www.linkedin.com/in/john-civita-25b61248 Websites: Winston Transitions New York City, Winston Transitions San Francisco

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THE FRIENDSHIP & DATING DUO

Ways You Can Be More Social and Less Lonely Even if You’re Not an Extrovert

By Jeremy and Ilana Hamburgh ARE YOU WONDERING WHERE YOU SHOULD GO TO MEET NEW PEOPLE, MAKE NEW FRIENDS, AND MAYBE EVEN FIND A BOYFRIEND OR GIRLFRIEND? ARE YOU SITTING AT HOME—PERHAPS PLAYING VIDEO GAMES OR SCROLLING THROUGH SOCIAL MEDIA—FEELING LONELY, DISCONNECTED, OR ISOLATED? HAS THE THOUGHT CREPT INTO YOUR HEAD THAT MAYBE YOU’RE MEANT TO BE ALONE?

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SKILLS FOR LIFE

Those are terrible thoughts and feelings to experience. Even worse, for many neurodivergent adults, those thoughts and feelings are exactly what is going through their heads every day—sometimes all day, every day!

As you walk down the street, you see others laughing with friends. You scroll through social media, observing people posting about living their best lives—traveling, dining out, picnicking in the park. From Netflix to television to magazines, you’re bombarded with images of happy people living joyful lives with their friends and partners everywhere you look.

All this can leave you feeling despondent: Everyone else appears to have a connected life, while you don’t. Everyone else seems adept at making new friends, yet you struggle. Everyone else seems to land dates one after another, but you don’t.

In our Strategy Sessions with neurodivergent adults, the recurring question is: “What do I need to do so I can have that, too?”

We have dedicated considerable thought to addressing that question. In fact, this inquiry is central to our program, Social Life 360. It’s literally all we think about!

Historically, neurodiverse people have been advised: “Just get out there. Go to some social events. Walk up to people, talk to them, and just be you.”

It’s well-meant advice. One could even argue that it suits some people perfectly. There’s certainly a small slice of the neurotypical and neurodivergent communities who have the right skills and just need a little nudge to leave the house and be more social. For the rest of us, however, this advice isn’t constructive.

One reason is that the typical “Just get out there” guidance is vague. In other words, it comprises the “What” without the “How.” The “How” is the crucial part! Equally important is that one-off social events aren’t generally suitable for most neurodivergent people, especially when seeking connections and friendships. It’s very, very hard to be the coolest, calmest, and most confident version of yourself when you’re walking into a random event filled with random people with no plan or strategy. You’re basically “winging it,” hoping that after some trial-and-error, you’ll click with someone there. But honestly, how often does that happen?

Over the years, we’ve discovered that the best way to feel more connected, less lonely, and isolated is to integrate into the very “fabric” of a community. The Social Life 360 friendship and dating program refers to this as becoming part of your “tribe.”

The importance of finding your tribe isn’t an autistic or neurodivergent thing. It’s a human thing. We both moved 3,000 miles away from our friends and families, and one of the most important gifts we gave ourselves was finding tribes where we felt welcomed and embraced.

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Through our tribe, we’ve found our friends. For many of our friends, it’s how they found their boyfriends, girlfriends, husbands, and wives. That sense of belonging somewhere makes a huge difference to your social life.

Becoming part of a tribe is a gentler process than walking into a random event with random strangers. Over time, you can get

SKILLS FOR LIFE

to know the place, the pace, and the people without the urgency to meet everyone quickly before they vanish.

Although singles mixers, happy hours, and one-off events will always exist, they only suit a certain type of individual. Extroverts love them. Confident types love them. The well-connected people looking for something new to love them.

However, it’s OK if you don’t. And it’s OK to opt-out. Instead, find the places where you can gradually become part of the fabric of a tribe. Allow the embrace of that community to propel you towards a feeling of connectedness. If you struggle with that, ask for help! It’s worth it—there’s nothing like the feeling of community.

Jeremy and Ilana Hamburgh are friendship and dating coaches who empower autistic and neurodivergent adults to find community, make friends, start dating, and find love. Ilana has over 16 years of experience as a special education teacher in New York City and is now the Director of Education for My Best Social Life. Jeremy has over 13 years of experience coaching autistic adults into the social lives they want and deserve.

Their flagship program is called Social Life 360, and it’s like nothing else in the autism and neurodivergent world: It combines a warm and inclusive community, private and group coaching, and confidence and social skills building that uses formulas, diagrams, and step-by-step processes which allow a differently wired brain to observe, understand, and engage with the social world.

Jeremy and Ilana offer a no-cost 90-minute Strategy Session to every family whose autistic or neurodivergent adult wants a more fulfilling social life, and they love giving families incredible clarity on the path from loneliness to a more connected life. Jeremy and Ilana do all this with a deep commitment to kindness, compassion, and world-class support.

Website: www.MyBestSocialLife.com Emails: Jeremy@MyBestSocialLife.com, Ilana@MyBestSocialLife.com

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SAFETY GOALS WITH

NICOLE

REDUCING THE RISK OF ABUSE WITH CHILDREN WITH DISABILITY

The Dangers of Bullying and Why We Should Make A Change

By Nicole Moehring

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EMOTIONAL HEALTH

N

ot too long ago, I attended a sporting event for my son. There were typical peers at the event helping the children with disabilities. While watching the game, I overheard two “helpers” mock the children with disabilities. I continued watching for a bit longer before I did anything. Firstly because I was in utter shock, but more importantly, I wanted to make sure I heard correctly. Unfortunately, I hadn’t misheard; they were mocking children with disabilities. That was not OK, and I refused to tolerate it. Another mom and a grandmother also overheard, sharing my distress. After the game, we approached our kids’ coach, and the matter was addressed IMMEDIATELY. While I am unaware of the consequences faced by those boys who were making fun of the children on my son’s team, one thing is certain: I know I responded appropriately.

What is bullying?

Bullying is aggressive and unwanted behavior towards someone, often involving a real or perceived power imbalance.

The behavior is repeated or has the potential to be repeated over time. Bullying takes various forms, including: 1. Cyberbullying • Creating fake accounts in someone’s name to create problems or to try to keep contacting someone who has blocked you • Mocking or teasing someone due to opinions, race, religion, gender, sexual orientation, or appearance • Sending hurtful messages • Sharing unauthorized photos or videos of someone • “Trolling” (posting or commenting online to provoke an argument or emotional reaction)

Why is bullying harmful?

Believe it or not, bullying not only harms the victim but also the bully. Often, bullies are insecure, jealous, or unhappy, leading them to hurt others. If bullying is not handled correctly, it can have lifelong effects. Victims may develop low self-esteem, self-worth, and an inability to trust others. The bully may escalate aggression, face higher risks of engaging in criminal behavior, and struggle to establish and maintain relationships.

How can we help our children?

We can start by teaching children from a young age what bullying is. Children need to learn it is not right if someone is bullying them, as well as how to protect themselves and others who are being bullied. Most importantly, they must understand the necessity of reporting bullying to a trusted adult.

Conversations about bullying with children with disabilities should be tailored to their developmental, intellectual, and cognitive levels. Educating your child with customized instructions is essential. Encourage your child to confide in a trusted adult if they feel bullied. Ongoing dialogues are key, given that children with disabilities learn best with repetition.

Consider incorporating role-playing, various examples, and an allowance of open discussions to address specific situations.

2. Emotional and verbal bullying • Inappropriate sexual comments • Intimidation • Making fun of someone • Name-calling • Teasing • Threats 3. Physical bullying • Damaging another’s property • Hitting • Imitating • Kicking • Punching • Pushing • Theft • Tripping 4. Social bullying • Cyberbullying • Embarrassing someone • Exclusion from groups or activities • Spreading rumors

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EMOTIONAL HEALTH

All children are entitled to respect and dignity. Intimidation or fear should not be part of a child’s experience, whether from peers, parents, or teachers. As guardians, it is our responsibility to show children right from wrong.

on relatable topics. Simultaneuously, they are occasions to keenly observe our children’s surroundings. While personal time is valuable, our number one priority should always be to put our children first.

Why is observing so important?

Never be afraid to stand up for your convictions and address hurtful behavior. Accountability is essential. I hope those two boys learned a valuable lesson that day.

Often, as parents of children with disabilities, our only respite is during their activities, sports event, or school hours. These moments become opportunities to engage with fellow parents

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 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 support 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

LET'S WORK TOGETHER

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MY WORD

What Presumed Incompetence and Exclusion Feels Like

By Nate Trainor

WHEN PEOPLE ASK WHAT IT WAS LIKE BEFORE I HAD THE MEANS TO COMMUNICATE WITH THE OUTSIDE WORLD, I FIND IT DIFFICULT TO CONVEY MY ANSWER IN WORDS. HOW DO YOU DESCRIBE AN ISOLATING, DARK WORLD FROM WHICH YOU HAVE ESCAPED? HOW DO YOU EXPLAIN A PHYSICAL STATE WHERE YOU SEE THE WORLD THROUGH A SMALL WINDOW YET CANNOT INTERACT WITH IT? WHAT EXPERIENCE MIGHT YOU SHARE WITH ME THAT WOULD SUFFICIENTLY CONVEY WHAT IT FELT LIKE?

I

n short, I would describe my days before I could communicate as being in jail—one with high walls. Worse, it was like solitary confinement because I couldn’t talk to anybody. I could see and hear everything. I knew what was going on around me. But I could not interact or unleash the thoughts and emotions trapped inside my brain. Another way I would describe it is like being trapped in a bottle.

My name is Nate Trainor, and I have Joubert syndrome, a condition that has thus far made it impossible for me to speak and severely inhibits my physical abilities. My brain has severe problems with balance and coordination. I can move my arms and my legs, but I have minimal control over them. I need help with basic activities of daily living.

In the world outside, some people are uncomfortable around me because I don’t physically move or react in the way other people do. My head is often in motion, and my arms move a lot.

I can hold still, but sometimes, when I am excited or agitated, that becomes difficult for me. Interacting with someone like me challenges them. It may make them feel awkward or vulnerable. Others are afraid because they have never seen someone like me before. I understand it’s hard to see past your initial reactions and look deeper, and I believe people

are capable of significant change. I think all people have the potential to be awesome.

Unfortunately, many well-meaning people, including medical professionals, misread my capabilities and tried to define me prematurely. At the age of two, a psychologist labeled me as “profoundly retarded.” This diagnosis, based on an outdated and flawed measurement like IQ, haunted me for years. It became an official designation that limited expectations and opportunities. Yet the truth is that my condition has not inhibited my thinking at all. I learned language almost the same way any child learns: by total immersion. I was acutely aware of what was going on around me. Emotionally, I felt things strongly, perhaps with more intensity than my peers.

I felt bottled up—unable to release my feelings or thoughts in a specific way.

My facial expressions became my only means of communication—a mirror of how I felt. My mom understood them. I couldn’t hide or control my facial expressions, so she knew I liked or understood something when I smiled or laughed. She knew me, and even if she didn’t know how to help me reach out and communicate back, she knew she had to try to give me every opportunity she could.

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MY WORD

Because of my label, I qualified for a segregated school program for children with special needs. Initially, my mom thought it might be the best option for me. But, the expectations were low, and the teaching methods limited our growth and potential. It felt like the message reinforced daily was, “We don’t expect much from you.” I knew I didn’t belong there, but I couldn’t prove it through the standardized testing they used to determine my abilities.

Fortunately, my mom found an alternative—an inclusive school called Hansen Elementary School. In this school, kids like me were included and welcomed into a regular class. It was a rarity in 1991, especially in the Midwest. I was lucky to be welcomed with open arms into a school that embraced inclusion as part of its philosophy. Hansen Elementary School became a turning point in my life.

At six, I joined kindergarten at Hansen, and from that moment, I never looked back. The transformation was remarkable. The feeling of being treated like an animal vanished, and I had the chance to meet kids and feel included in my community. By simply sitting alongside everyone else, I started learning at an accelerated rate, absorbing everything around me. Although I couldn’t prove what I was learning, I knew deep within that I could do so much more.

One of my first teachers at Hansen was Jeni Moravec, who later became a close friend of my mom. She had been an advocate for inclusion long before she met me, even writing her master’s thesis on the positive impact of integrated playgroups for disabled and nondisabled children. It was only fitting that she ended up teaching at Hansen, a school that had already embraced inclusion for several years before I enrolled.

Looking back, I realized the flaws in the segregated school system. The low expectations, lack of challenges, and absence of positive role models hindered the growth and development of special needs children. It became clear inclusion was the key to unlocking our potential. When nondisabled peers and mentors are involved, disabled children can go beyond what they believed was possible. The paradigm shifts from “you are limited” to “you are capable of greatness.”

I understand it’s hard to see past your initial reactions and look deeper, and I believe people are capable of significant change. I think all people have the potential to be awesome.

The journey of breaking free from the constraints of my condition and the labels imposed on me has not been easy.

It required perseverance, determination, and the unwavering belief that I had so much to offer. Thanks to the inclusive education I received, I am now an advocate for people with

exceptional needs. I strive to challenge the existing perceptions and stereotypes, promoting inclusive practices that empower and uplift every person, regardless of their abilities.

Jeni’s passion for inclusion and her belief in the potential of every student, regardless of their abilities, made a significant impact on my educational journey. With her support and the inclusive environment at Hansen, I flourished. I began to demonstrate my abilities beyond what anyone had expected.

I started communicating using alternative methods, such as assistive technology and sign language. The walls of my metaphorical jail started to crumble, and I finally had a voice.

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MY WORD

My experience reminds me that no one should be defined by a label or underestimated based on their initial appearance. We are all capable of growth, learning, and contributing to society in our unique ways. By embracing inclusion, we create a world where the walls of limitation crumble, and individuals with exceptional needs can thrive and unleash their full potential.

My journey from feeling like I was in jail to finding freedom and inclusion serves as a testament to the power of an inclusive education system. It is a call to break down barriers, challenge societal norms, and create opportunities for all people to shine. Together, let us strive for a world where everyone’s potential is recognized, celebrated, and nurtured. You can learn more about my journey by reading my book, Nate’s Triumph: Presuming Competence and the Fight for Inclusion.

Nate Trainor is a passionate inclusion advocate, captivating presenter, and accomplished author of the book Nate’s Triumph: Presuming Competence and the Fight for Inclusion. With a deep commitment to promoting diversity, equity, and inclusion in all aspects of life, Nate dedicates much of his energy to creating inclusive spaces and empowering individuals from all walks of life. Nate also enjoys getting a cold drink with friends and traveling.

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EXCEPTIONAL ADVOCATE

Adjusting How We Think About Autism

See My Strengths First

By Karen Kaplan, MS

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EXCEPTIONAL ADVOCATE

I WAS REMINDED TODAY OF HOW MUCH WE ALL NEED TO “RESHAPE THE NARRATIVE ON AUTISM” AS I READ A WISE ARTICLE IN “PSYCHOLOGY TODAY” WRITTEN BY DR. GERALDINE DAWSON. SHE IS THE DIRECTOR OF THE DUKE UNIVERSITY CENTER FOR AUTISM AND BRAIN DEVELOPMENT.

I

have always worked with parents, teachers, therapists, and individuals on the spectrum to instill hope and recognize capabilities and possibilities. This article further reinforced my approach.

When the little engine in The Little Engine That Could was able to successfully transport gifts to children on the other side of the mountain, it was because he believed. When Annie Sullivan did not give up on Helen Keller and saw the world from Helen’s perspective, she then learned to read, communicate, and lead a meaningful life.

When a mom found out her son with autism loved to make Biscotti, Smile Biscotti was founded. When a couple realized their son on the spectrum had a passion for vehicle detailing, a unique car washing company was established: Rising Tide Car Wash.

When a nonverbal son on the spectrum showed a love for running, his mother found a way to help him complete marathons, 50-mile races, and, recently, a 100-mile run.

These examples show that positive change occurs when we shift away from negative narratives. By looking beyond the definition of autism and genuinely getting to know the person, we see the gifts they offer and can leverage their strengths at home, in school, at work, and within our communities. This, in turn, supports the development of self-awareness and positive self-esteem.

Focusing solely on deficits limits us; it imposes restrictions.

Parents, grandparents, caregivers, and teachers might be less inclined to find different ways to expand, nurture, and facilitate growth.

I am not suggesting we ignore learning differences and personal challenges or make light of how anyone with exceptional needs might be affected by their diagnosis. Instead, let us find ways to use strengths to help people feel calmer, safer, and

more engaged. I also suggest we delve deeper than labels to find individual characteristics to see how their uniqueness can positively contribute to relationships, work, and creative endeavors. Among exceptional needs individuals, we now understand there are authors, musicians, basketball players, artists, engineers, scientists, actors, actresses, dog walkers, DJs, Zen meditation practitioners, and more.

So, I say, see the child first, not their differences. Find a way to connect to the child and put on your detective hats to understand how they connect, learn, think, and feel. Accept them for who they are, not what you think they should or will be. Help them bring their strengths to life. Put their well-being first, not their deficits.

So, how do we change the narrative, as Dr. Dawson suggests?

How do we start recognizing character strengths? Here are some thoughts of mine on the subject: 1.

All evaluators need to stress to parents the child’s strengths following evaluations. Ensure there are strong points in the final report that highlight capabilities. Perhaps share stories of people on the spectrum who have leveraged their intense interests and made those their fields of work and socialization. Offer hope.

2.

University credentialing programs, please educate teachers that all brains are not the same and that a diverse brain does not make a person incapable of learning.

3.

Counselors and behavior specialists help parents and teachers understand how to nurture independence and embrace mentorship and coaching roles.

4.

For credentialing programs, please offer all teachers multidisciplinary curricula for teaching reading, spelling, writing, socialization, math, science, and social studies.

5.

Credentialing programs, please teach teachers to use creative teaching methods. Encourage them to use art, music, and movement to teach, not just show them how

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EXCEPTIONAL ADVOCATE

to pull out the ditto or curriculum book or rely on traditional lectures.

6.

Individualized Education Program (IEP) teams need to SHIFT. Show parents how you are going to identify their child’s interests and strengths and use them to implement all goals and services.

7.

The Individual Transition Plan (ITP) team should prioritize identifying and nurturing interests and strengths.

Bring in resources to support and expand those. Train parents to nurture independence. Think outside the box about living sites and working sites.

8.

Post-secondary institutions should create an environment where students feel safe expressing their learning differences.

9.

Agencies like the Regional Center Services, Department of Development Services, and Department of Rehabilitation should think outside their narrow guidelines and policies. Create new assessment tools to identify possibilities, strengths, and interests. The same assessment tool for Down syndrome may not be great for all those with Down syndrome and is especially not accurate for the autism spectrum or attention deficit hyperactivity disorder (ADHD).

10. Speech therapists leave your therapy room, enter the classroom, and collaborate with educators. Invite the parents to sessions. Teach them.

11. Occupational therapists should bring sensory tools to classrooms, extending learning beyond therapy sessions. Go into the home and help the parents create tools.

12. Human resource specialists, it is time you realized the positive attributes of someone on the spectrum (excellent rote memory, ability to absorb facts wholly, extremely focused, propensity for innovation, rules and

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routine-oriented, excellent attention to detail and accuracy, kindhearted, loyal, honest). Adjust your job skill requirements to accommodate different social abilities—design calm environments to interview in. Provide details ahead of time to decrease the anxiety of a potential employee. Not all workers are the same or work the same way, but if they get the job done and have done it well, why not accommodate them too? Shift the narrative at work.

Numerous lists outline character strengths that most individuals possess to some extent. (Gordon, 2022). We can use these to reshape our narrative about those on the spectrum.

Early nurturing and awareness-building can amplify these strengths: • Creativity: Thinking of new ways to do things • Curiosity: Taking an interest in diverse topics • Open-mindedness: Examining things from all sides, thinking things through • Love of learning: Mastering new topics, skills, and bodies of research • Perspective: Offering sound advice; looking at the world in a way that makes sense • Honesty: Speaking the truth; authentic communication • Bravery: Embracing challenges, difficulties, or pain; not shrinking from threat • Persistence: Completing tasks • Zest: Approaching life energetically • Fairness: Treating all equitably • Leadership: Organizing group activities and making sure they happen • Teamwork: Collaborating effectively as a group or a team • Forgiveness: Forgiving others

EXCEPTIONAL ADVOCATE

•

• • • • •

Modesty: Letting one’s successes and accomplishments stand on their own while not being too proud or confident of abilities Prudence: Avoiding doing things they might regret; making wise choices Self-regulation: Being disciplined, controlling one’s appetites and emotions Appreciation of beauty: Noticing and appreciating beauty and excellence in everything Gratitude: Expressing thankfulness Hope: Anticipating and working towards positive outcomes

• •

Humor: Making other people smile or laugh; enjoying jokes Religiousness: Having a solid belief about a higher purpose and meaning of life

As Dr. Dawson recommends, I hope we can all work together to help change the narrative. I am committed to continuing these efforts.

References: Gordon, S. (2022, May 13). What are the 24 character strengths?

Everyone has varying degrees of these positive traits. Verywell Mind. https://www.verywellmind.com/what-are-characterstrengths-4843090

Karen Kaplan, MS, 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 schools for 20 years before opening her own residential and education program for students with autism. She worked in credential programs at Sacramento State University as well as UC Davis and spent 20 years directing private schools for those with autism and similar learning challenges.

Karen founded a non-profit, Offerings, which helps cultures globally to 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 annual Autism Awesomeness event. She is currently consulting, helping families, schools, and centers for children, teens, and adults. Karen has authored three books: Reach Me Teach Me: A Public School Program for the Autistic Child; A Handbook for Teachers and Administrators, On the Yellow Brick Road: My Search for Home and Hope for the Child with Autism, and Typewriting to Heaven… and Back: Conversations with My Dad on Death, Afterlife and Living (which is not about autism but about having important conversations with those we love).

Exceptional Needs Today | Issue 14 | 35

ARTICLE HEADER

EXCEPTIONAL BOOKS

The Happy Clam

By Rosemary A. Schmidt The Happy Clam both entertains and inspires, blending personal narrative with relatable research in contemplating what brings happiness, how change happens and what makes us tick. Weaving research from the fields of sociology, psychology, and neurology with deeply personal, relatable anecdotes, Schmidt lays out a guide to surviving the tides of life. Without telling you what to do, The Happy Clam offers a roadmap allowing readers to chart their own course.

“As she blends memoir with self-help, Schmidt discusses elements of her and her loved ones’ lives—experiences from work and childhood—that have taught her about happiness. Throughout, she revealed herself as insightful and funny, charming and wise, qualities that, along with the rigor of her presentation of research, ensure The Happy Clam stands out from the pack.”

—BookLife Review “During a time when the whole world is feeling quite down and lost, a book such as this is welcomed with open arms.”—BookLife Prize “There’s something raw and captivating that makes this book a page-turner.”—Danielle Holian Rosemary A. Schmidt is a Boston-area author, blogger, and geologist. She published her first book, Go Forward, Support! The Rugby of Life, in 2003, explores life lessons drawn from the sport of rugby. Her second book, The Happy Clam, was released in 2020 during the early days of the pandemic. In between, Rose started a blog in 2014 (Rosebud’s Blog) where she writes about current events, art, science, culture, and society.

TO PURCHASE: https://www.amazon.com/Happy-Clam-Rosemary-Schmidt/dp/0970852827/ Rosemary A. Schmidt holds a Bachelor of Science degree in Geology from the University of Dayton, a Master of Science in Geology from the University of Illinois, and works as a professional geologist. Rose originally hails from Chicago and now lives near Boston with her spouse, Susan.

Rosebud’s Blog: https://www.happyclam.net Bookshop.org: https://bookshop.org/p/books/the-happy-clam-rosemary-a-schmidt/15068198 GoodReads: https://www.goodreads.com/book/show/54856757-the-happy-clam GoodReads Author page: https://www.goodreads.com/author/show/254930.Rosemary_A_Schmidt Twitter: Rosebud@GainlineRS LinkedIn: https://www.linkedin.com/in/rosemary-schmidt-a19560184/ Instagram: https://www.instagram.com/gainline.rs/

Photo credit: Natalie Nigito Photography

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EMOTIONAL HEALTH

Creating Emotionally Safe Spaces

for Children When There Are Different Abilities

By Ginger Healy, MSW, LCSW

38 | Exceptional Needs Today | Issue 14

EMOTIONAL HEALTH

MY HUSBAND IS ONE OF THE MOST EMOTIONALLY REGULATED PEOPLE I KNOW. HE IS THE GROUNDED ROCK OF OUR FAMILY. I SAT DOWN WITH HIM TO EXPLORE THE HOW AND WHY OF HIS STABILITY. HE LAUGHED AND SAID, “ANYONE IN MY FAMILY WILL TELL YOU THAT WHEN I WAS YOUNG, I HAD A VERY SHORT FUSE!” HE THEN TOLD ME THE FOLLOWING STORY. It was my brother’s birthday; he was turning 10. I was 12. He was opening presents and unwrapped a remote-control car. I had wanted that exact toy for years. My brother ripped off the paper and hastily moved on to the next gift. My blood began to boil.

I knew he wasn’t going to enjoy that car like I would have. He was completely unworthy, and this felt like a slap in my face. I threw my ice cream-filled spoon across the room and screamed at the unfair universe, making sure my brother knew how disgusted I was. The room, filled with all his friends and all my family, grew very silent. I was mortified and still very angry.

It has become a funny family story, but I also realize there were several moments in my childhood when I blew up after holding in feelings for too long. I hated school because I was bullied and never felt safe there. Each day, I watched the clock because I could not wait to get home.

And there it was! The root of his emotional explosions suddenly became very clear, and just as apparent was the shield for all that anger, shame, and pain that came from being harassed and mistreated at school.

Home

My husband grew up in a tight-knit family with four brothers who were close in age. They truly were and still are each other’s best friends. (Can we all just take a minute to honor his mom, who raised five boys?) I asked him to tell me more.

My brothers and I were far from perfect. We always teased each other, and sometimes we hurt each other’s feelings, but we always had each other’s back. We confided in and trusted each other. My parents set the tone that it was OK to make mistakes, and I always felt safe at home.

So why did I start out telling a story of dysregulation that happened at home when I just shared that home was his refuge? Because it wasn’t the physical house that buffered and consoled him. No, his emotional equilibrium developed over time through repeated, warm, connective responses where his emotional and physical needs were met by empathetic family members, regardless of location. He was co-regulated.

Whether your child is at home, school, or in a public place, they won’t always be calm, cool, and collected (regulated). That ability to effectively manage our feelings and move fluidly between stress and a balanced, steady state takes time, practice, and, most importantly, a safe, attuned individual to help build and scaffold that skill.

It’s human to become dysregulated. When we become overwhelmed and out of sync, our bodies try to survive these moments in many ways. This is where we see fight, flight, freeze, and fawn responses. Additionally, factors like developmental age, history of adversity, prenatal exposure, epigenetics, and more come into play. No matter the cause, dysregulation can be—well, let’s not downplay this. Dysregulation IS a source of frustration and distress for caregivers.

My goal is to help caregivers create physically and emotionally safe spaces for dysregulation. Yup, you heard it: I am advocating letting those moments happen without rushing to stop them. We all have moments of Zen, and we all have moments of struggle and breakdown. That’s OK! It’s just not possible to handle all the situations life throws at us in an unshakeable way.

I would rather we honor all emotions and understand they are happening for a reason. Immediately shutting down behavior that results from fear, anger, sadness, or pain won’t fix or heal anything in the long run and may strain your connection. If we focus on the relationship instead of the behavior, we see less struggle in the moment and stronger resilience moving forward.

Exceptional Needs Today | Issue 14 | 39

EMOTIONAL HEALTH

Let’s talk about safety

Safety is an experience in the body, not just a thought in the mind. It’s not physically tangible; it is experienced internally.

It’s felt. This is called felt safety. Until you FEEL safe, your body and brain won’t let you respond as if you were free of threat or danger. The nervous system must sense and believe in a basic and profound way that it is truly safe.

If we, as parents, educators, and child-serving professionals, want to establish a safe space for children, we need to create felt safety for them.

Below are ten super suggestions for fostering a sense of security and safety: 1. Get curious. Determine what the behavior is communicating. Frequently, it’s a lagging skill that needs accommodation or a barrier that needs elimination.

2. Food, water, and rest. Emotional overwhelm often results from hunger, dehydration, and fatigue. Carry snacks and water, and offer naps.

3. Increase predictability, structure, and routine. Discussing upcoming transitions and plans will help children prepare for impending change and feel more in control.

4. Avoid sarcasm, watch body language, and use a soothing volume and tone of voice. Yelling (and ignoring) puts a child in a state of defense and escalates behavior and fear.

5. Accept and hold space for emotions by being fully present. Avoid judgment and make room for whatever they feel. Reflect those feelings back to them to help them feel seen.

6. Create a collaborative safety/response plan for dysregulation ahead of time to ensure all are physically safe as well.

7. Help your child notice sensations and symptoms in their body. Help them learn and understand the language of their nervous system.

8. Name it to tame it. Saying it out loud and giving words to emotions releases healing hormones, helping us feel better. This also works great for adults modeling for children: “I need a minute. I am having a hard time.”

9. Change our behavior from reactive to responsive. Kids are more likely to exit survival mode if we help soothe and regulate instead of scaring or punishing them into compliance. We must pause and steady ourselves first.

10. Be the safe space. Your physical and emotional presence will convey safety. Not abandoning them during dysregulation is safety. Tune out the rest of the world and envision a protective bubble for you both during the meltdown.

Safe spaces and tools

Safe spaces can be created at home in a nook or a corner with

40 | Exceptional Needs Today | Issue 14

the help of regulation tools that settle the nervous system.

These are not seclusion rooms or “time-out” spots. Dysregulation should never be punished. The key is co-regulation, so an attuned adult should be present (you are the safe space).

On a smaller scale, a portable “calm kit” works well preventively and when dysregulation happens outside the home. The car, diaper bag, child’s backpack, etc., are great spots for tools and kits. I have used them when my child was nervous before a recital, waiting in line at the grocery store, anticipation at the doctor’s office, and when traveling.

Here is a suggestion list for items to create your kit and space.

Don’t forget to look for items at garage sales or Goodwill. Ask for donations!

Items that bring awareness to touch for times when a child feels disconnected: • Fidgets (e.g., poppers, spinners) • Goo, Silly Putty • Squishes, silicone sponges • Kinetic sand, Play-Doh • Stickers, pipe cleaners Items for body input, balance, and movement that help when they get “stuck” or feel frozen: • Weighted blanket, wrap, or lap pad • Mini Trampoline • Plushies, pillows • Swing • Wobble seat Regulation tools: • Coloring supplies • Bubbles • Noise-canceling headphones • Music • Snacks and water A safe space is possible anywhere and anytime. We cannot remove all adversity and stress from our children’s lives, and we shouldn’t. They need to be able to handle and navigate the feelings that come with struggle. They need to learn emotional regulation. But there is no rush to achieve emotional regulation. It can take a lifetime to develop and is created through co-regulation. They need you. You are the strategy, you are the safe space, and you can help your child by being regulated, offering co-regulation, and modeling self-regulation skills!

Citations van der Kolk, B. A. (2015). The body keeps the score: Mind, brain and body in the transformation of trauma.

Penguin Books.

Siegel, D. J., & Bryson, T. P. (2012). The whole-brain child. Robinson.

Greene, R. W. (2005). The explosive child. New York, Quill; Enfield.

EMOTIONAL HEALTH

Sinarski, J. (2022). Riley the Brave’s sensational senses. Jessica Kingsley.

Purvis, K. B., Cross, D. R., & Sunshine, W. L. (2007). The connected child: Bring hope and healing to your adoptive family. Mcgraw-Hill.

Beem, J. (n.d.). The voice for traumatized children and families. Attachment and Trauma Network. https://www.attachmenttraumanetwork. org/

Perry, B. D. (2020). Child Trauma Academy. Child Trauma Academy. www.childtrauma.org

Ginger Healy, MSW, LCSW, is a clinical social worker with almost 30 years of experience in the field. Ginger has worked as a child abuse investigator, hospital social worker, and school therapist. She spent 15 years as the social service supervisor at an international adoption agency and was able to travel to provide support for orphanages all over the world. This job continues to inform her work on attachment and trauma needs in children. She is currently the director of programs for the Attachment & Trauma Network where she co-anchors the podcast “Regulated and Relational” and speaks across the nation on trauma-informed schools, therapeutic parenting, and community engagement. Ginger is married and has four children who have been her greatest teachers about developmental trauma and special needs. She loves to travel and read.

Exceptional Needs Today | Issue 14 | 41

SHAPING OUR

FUTURE

Daddy’s Stitches: Supporting Children When Caregivers Need Medical Attention

By Rose Adams, OTD, OTR/L

42 | Exceptional Needs Today | Issue 14

PARENTAL SUPPORT

THIS YEAR, MY HUSBAND AND I HAD THE OPPORTUNITY TO VOLUNTEER FOR FIELD DAY AT OUR TWIN BOYS’ SCHOOL. JUST ABOUT TWO HOURS INTO THE DAY, MY HUSBAND WALKED OVER TO ME WHILE HOLDING HIS RIGHT ARM TO LET ME KNOW HE THOUGHT HE MIGHT BE INJURED. IN SHOCK, I WONDER WHAT COULD HAVE HAPPENED. HE WAS ESCORTED TO THE SCHOOL NURSE BY A TEACHER AND CAME BACK FIVE MINUTES LATER TO TELL ME HE NEEDED TO SEEK EMERGENCY CARE.

Slip, slide, and pop!

Daddy needs stitches

Step 1: They’ve got questions that need answers Before your medical or related procedure, you may have questions that need answers. You may want to understand the causes, diagnoses, implications, and prognosis involved in your situation. Similarly, children seek to make sense of it all through questions. They may not necessarily understand the implications of your injury or reasons for needing care. They may ask a million questions to understand as much as they can about what’s going to happen. As the caregiver, it is OK not to have all the answers. Rather, welcome questions and be positioned to provide honest and supportive answers that best meet individual needs and differences.

Caregiving is a meaningful and essential occupation

Step 2: Validate feelings Big situations often call for big feelings. We have them, and so do children. These feelings might be expressed in different ways, such as changes in behavior. When my husband walked over to me during Field Day, I remember feeling shocked; I was also in disbelief. Later, I experienced feelings of sadness and frustration. Our boys also had feelings about the situation. Jojo expressed feeling sad, and David showed his emotions through his behavior. He appeared upset by the facial expressions that he made. Validate your child’s feelings and be honest about your own feelings. Our vulnerability might encourage them to do the same.

While assisting our son Joseph’s (Jojo) class during their slipand-slide activity, my husband was stationed downhill at the end of the slide. He was assisting a child who appeared to be injured while another child came sliding down full speed ahead. He extended his arm to prevent the sliding child from crashing into the first child, then heard something go “pop!”

After a trip to the ER and follow-up appointments with an orthopedic doctor, it turned out he’d completely torn his biceps tendon.

One evening after work, I came home and found a note by the door that read, “Open now.” I thought it must be important.

So, without hesitation, I opened the message and read, “Daddy get stitches.” The note was written by Jojo, who has had a few encounters with medical professionals, one of which led to stitches over his left eye. He was thinking and possibly having feelings about his daddy needing stitches after his injury and found a way to communicate that to me. Inspired by Jojo, I will share ways to support children when the caregiver needs care.

For this article, caregivers will refer to parents, guardians, grandparents, family members, and any other adults responsible for the care of a child. The American Occupational Therapy Association (AOTA) describes caregiving or the “care of others” as an instrumental activity of daily living (IADL). These are activities that involve supporting daily life within the home or community settings (AOTA, 2020). If you are a caregiver, your primary role is to care. You care for, help, and ensure the safety and well-being of others. Your role is meaningful and can also be challenging. So, what happens if you’re the primary caregiver and you also need care? How would your seeking care impact your child or other dependents? Let’s talk about it.

First and foremost, take all the necessary measures to care for yourself. We cannot take care of others if we are not OK. Second, let’s discuss ways to support our loved ones when we need medical care.

Ways to support a child when the caregiver needs medical attention

Here are three ways to support children when you need medical care, but there could be many more! Each step can be tailored to meet the individual needs of your family.

A day after the surgical procedure, I asked the boys to make a card or write a letter to their daddy. I recorded a video of them presenting their cards. David walked in, asking, “Does it hurt?”

He presented a note that was placed inside a colorful envelope that he made with a sad face and tears drawn on it. His message read, “I’m so sorry you got surgery.” Then he quickly said, “And I hate the guy who said you had to get surgery!” He was expressing sad and possibly angry feelings. Jojo wrote a threepage letter (well, three sentences on three pages) expressing his feelings and love for his dad. On page three, he wrote his hopes for the future: “I hope you can play with us when it feels better, ‘cuz, I miss those days.” Jojo wanted to get back to what really mattered most to him—playing. Playing is an important and meaningful activity (occupation) for children (AOTA, 2020).

Children develop, learn, express their feelings, and understand their world through play (Blumenstein, 2021; Yogman et al., 2018). Encourage children to share their feelings and validate them as often as possible!

Step 3: Create an action plan Through this experience, I discovered children want to help.

They want to be a part of the process and the plan. How can

Exceptional Needs Today | Issue 14 | 43

PARENTAL SUPPORT

possible scenario, but we can help put their minds at ease through individualized preparation techniques (Boles, 2016). Preparation helps create some level of predictability. Examples might include drawing, social stories, children’s books, and discussions. Can you think of other ways? Children with disabilities benefit from a plan of action so they know what to expect (Boles, 2016).

If your child is in school, consider including the teacher or members of the school team, as they might be thinking about the situation while at school (Adams, 2023).

Making the connection

“Daddy’s Stitches” represents the coming together of a family unit after an event that results in the caregiver seeking medical care. The stitches are not intended to undo the event; rather, they put the parts together so healing can begin. Recognizing that all members of the family may be impacted by the event is an excellent place to start. As the caregiver, please don’t forget about yourself. First, take the necessary steps and measures needed to begin the healing process. Then consider the three steps mentioned in this article as a guide to supporting your family through the recovery process.

we involve children in these moments? One way is to create an action plan that works best for your family. For example, you might want to include what to expect before, during, and after the procedure. Consider the individual needs and preferences of your family.

In our action plan, we discussed the current situation, what it meant for us, our roles in the recovery process, and answered questions as they came up. Here are some tips to help you create your action plan: • •

•

Kids included—Provide specific ways children can help.

Give them a voice in the situation by asking for their input.

Open lines—Keep the lines of communication open.

Loved ones may want to talk or have questions about the experience as they continue to process their feelings. Let them know they have a safe space to talk when needed.

Prepare—Before any medical procedure, there is a level of preparation that occurs. Preparation may help reduce anxiety, worry, and other associated feelings the dependent(s) and caregiver(s) might have regarding the upcoming procedure (Bartik & Toruner, 2017; Boles, 2016). We may not be able to prepare children for every

44 | Exceptional Needs Today | Issue 14

As for my family, we have had just a few days post-surgery and are grateful the procedure went well. As we await instructions regarding post-operative care, we are working on adjusting to this shift or change in our daily routines. I admit that some days are harder than others, but with ongoing conversations and mindful rest breaks (self-care) for myself as a caregiver, we are getting through it. You will also get through it. If you are currently in a place where you are the caregiver who also needs care, your children (and family) might appreciate the following: 1. Create a safe space where children can ask questions.

Provide honest and supportive answers according to their individual needs.

2. Validate your family’s feelings. They will have feelings throughout the process. Share your own emotions and use creative, child-centered ways to help everyone express their feelings if needed.

3. Create an action plan that works for your situation and family.

References Adams, R. (2023, April). Parents as partners: Promoting collaboration between home and school. Exceptional Needs Today, 12, 10-13. https://issuu.com/exceptionalneedstoday/docs/ent_issue_12_ final/s/20791018 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 Bartik, K., & Toruner, E. K. (2017). Effectiveness of a preoperative

PARENTAL SUPPORT

preparation program on children’s emotional states and parental anxiety. Journal of PeriAnesthesia Nursing, 33(6), 972-980. https://doi. org/10.1016/j.jopan.2017.09.008 Blumenstein, C. (2021, June). A life filled with play can support all kids with different abilities.

Exceptional Needs Today, 4, 29-31. https://issuu.com/ exceptionalneedstoday/docs/issue_4_final/s/12555720

Boles, J. (2016). Preparing children and families for procedures or surgery. Pediatric Nursing, 42(3), 147–149.

Yogman, M., Garner, A., Hutchinson, J., Hirsh-Pasek, K., & Golinkoff, R. M. (2018). The power of play: A pediatric role in enhancing development in young children. Pediatrics, 142(3), https://doi. org/10.1542/peds.2018-2058

Rose Adams, OTD, OTR/L, is an occupational therapy practitioner with a clinical focus in pediatrics. She works with children and families of children on the autism spectrum, multiple disabilities, and other neurodiverse needs. Dr. Adams has worked in schools, private practice settings, and community-based programs. She is the Executive Director at Changing Lives Occupational Therapy, PC and currently works at a local school district in New York. Dr. Adams is a graduate of Boston University’s Post Professional Occupational Therapy Doctorate (PP-OTD) program.

Her doctoral project focused on using song-based interventions to support young children with autism and related disabilities in participating in school-based occupations. When she is not working, she enjoys writing, baking, singing, and sharing time exploring the outdoors with her school-aged twin boys.

Website: www.changinglivesot.com/ LinkedIn: linkedin.com/in/rose-adams-otd-otr-l-5068b316

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Exceptional Needs Today | Issue 14 | 45

EMOTIONAL HEALTH

Eight Benefits of an Emotional Support Animal

By Ron Sandison, MDiv.

DR. TONY ATTWOOD, A BRITISH PSYCHOLOGIST NOTABLE FOR HIS WORK ON ASPERGER’S SYNDROME, STATES, “80% OF INDIVIDUALS WITH AUTISM EXPERIENCE SEVERE DEPRESSION AND ANXIETY.” IN JANUARY 2019, I EXPERIENCED ANXIETY AND DEPRESSION. I FELT OVERWHELMED IN THE WORKPLACE AND PRESSURED TO FINISH MY THIRD BOOK, VIEWS FROM THE SPECTRUM. I WAS ALSO TRAVELING AND SPEAKING AT 70 EVENTS A YEAR.

W

orking 40 hours a week with acute and sometimes aggressive psychotic patients as a psychiatric care specialist added to my worries and drained my mental strength.

This stress caused painful digestive issues, leading to my first visit to a gastroenterologist and a colonoscopy.

I adopted a puppy to help me cope with depression and anxiety. Brittany, the charge nurse of our unit, helped me search Pet Finder. The moment we saw Rudy’s picture online (a Jack Russell Terrier and Pomeranian mix), I knew he was the perfect addition to my family.

Three days later, my wife Kristen, daughter Makayla, and I met Rudy. We quickly noticed Rudy’s go-getter temperament and personality of an Energizer Bunny intoxicated by Red Bull with

46 | Exceptional Needs Today | Issue 14

a honey badger’s perseverance. It was love at first sight.

After adopting Rudy, we discovered his bad habits. Rudy loves to feast on plastic toy fruits and Barbie dolls. He is obsessed with fetching his favorite pink bone. If Kristen and I give attention to our cat, Frishma, Rudy responds with a barking meltdown. Nothing seems to slow him down except a two-mile fast-paced run through the snow.

On July 11, I returned to my apartment to find a note on the door from the apartment office informing us, “Apartment Building #1 does not permit dogs.” I advocated to the apartment office staff concerning my autism and the need for Rudy to help me deal with anxiety and depression. The office management graciously gave me time to gather paperwork for Rudy to be an emotional support animal (ESA). An ESA is a companion animal that provides you with support and com-

EMOTIONAL HEALTH

panionship for navigating mental health issues and anxiety.

Some common ESAs are dogs, cats, rabbits, mice, horses, guinea pigs, gerbils, and turtles.

and sleeps beside me in bed, providing comfort and rest.

After working overtime and coming home to my sleeping family, Rudy faithfully awaits me at the door.

2. Repetition: Rudy provides me with a daily routine, which we on the spectrum love. There are multiple rituals: taking Rudy for a walk, scheduled feeding, and just spending quality time together. Research has highlighted strong links between predictable, repetitive patterns and their calming, anxiety-busting effects.

3. Sensory soothing: Rudy helps keep my sensory issues in balance. I have sensory problems with certain sounds and smells. Bass kills my ears sound-wise, and I hate the smell of nail polish. When I experience sensory overload, Rudy is quick to nudge me with his paws and help me stay calm.

4. Exercise: I know what you’re thinking: “How can a dog help with exercise?” The answer is barking. By barking softly, Rudy reminds me to take him for a fast-paced twomile run during the summer. We also play squirrel hunting. Rudy has loads of fun terrorizing the local wildlife with his barking.

5. Enjoyment: Rudy brings great joy to our family as we watch the cat chase him throughout the living room or through his jumping with Makayla and me on the bed. My favorite game to play with Rudy is Wolf. I call Rudy a wolf, and he growls and play-fights.

6. Health: An ESA improves physical and mental health.

They can also help with post-traumatic stress disorder (PTSD). Interacting with animals decreases cortisol levels (the stress hormone); combats feelings of loneliness; boosts happy hormones like serotonin, dopamine, endorphins, and oxytocin; and reduces depression and anxiety.

Rudy helped my depression and anxiety decrease just by being around me.

I scheduled an appointment with a psychiatrist to write a prescription for Rudy to be an ESA. The doctor wrote an order.

I also wrote the landlord a letter advocating my need for an ESA. I collected letters from neighbors, testifying that Rudy is a good fit for our building and does not bark loudly or bite.

After two months of waiting, the landlord approved Rudy living in our apartment and waived the pet fee. He is officially on duty, though Rudy is the first ESA who needs more emotional support than his autistic owner. Despite this, there are eight benefits Rudy has allowed me to experience that I will enumerate.

1. Companionship: When I come home from an emotional day, Rudy is always happy to see me, licking my face and jumping into my arms. He lies on my lap as I watch movies

7. A pet without the fee: If you live in an apartment, an ESA can benefit you by waiving your monthly pet fee due to the Fair Housing Act (FHA). To qualify for the fee waiver, you need an ESA letter from a licensed therapist, psychiatrist, or medical doctor stating that the pet’s presence is vital for your mental health. After you get the letter, please submit it to your landlord, who cannot unfairly discriminate against your right to an ESA. 8. Social interaction: An ESA provides purpose and social interaction. Rudy brings meaning into our family’s lives with his enthusiasm and playfulness. He is an essential member of the Sandison family. He reminds me of the simple things in life, like a good meal. No matter what we have for dinner, Rudy is under the table begging for scraps. ESAs can help you be more social in public by providing an easy starting point: their presence! People will be more likely to start a conversation, encouraged by wanting to request to pet your animal or ask your pet’s name.

After getting Rudy, my digestive issues were relieved by my stress level going down. The American Veterinary Medical As-

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EMOTIONAL HEALTH

sociation (n.d.) states, “The human-animal bond is a mutually beneficial and dynamic relationship between people and animals that is influenced by behaviors essential to the health and wellbeing of both. This includes, among other things, emotional, psychological, and physical interactions of people, animals, and the environment.” An ESA can help you and your children deal with mental health issues, so research the best animal for you.

Reference American Veterinary Medical Association. (n.d.). Human-Animal Bond. Retrieved from https://www.avma.org/one-health/human-animal-bond

Ron Sandison, MDiv., works full time in the medical field and is a Professor of Theology at Destiny School of Ministry. He is an advisory board member of the Autism Society Faith Initiative of the Autism Society of America, the Art of Autism, and the Els Center of Excellence. Ron holds a Master of Divinity from Oral Roberts University and is the author of A Parent’s Guide to Autism: Practical Advice. Biblical Wisdom published by Siloam, and Thought, Choice, Action. He has memorized over 15,000 Scriptures, including 22 complete books of the New Testament. Ron speaks at over 70 events a year, including 20-plus education conferences. Ron and his wife, Kristen, reside in Rochester Hills, MI, with their daughter, Makayla.

Website: http://www.spectruminclusion.com Facebook: https://www.facebook.com/SpectrumRonSandison Email: sandison456@hotmail.com

48 | Exceptional Needs Today | Issue 14

SKILLS FOR LIFE

Autism, All Grown Up Building Pathways from ABA Treatment to the Workplace

By Jagmeet Sangha, BCBA EARLY DETECTION AND TREATMENT FOR AUTISM HAVE EXPERIENCED A REMARKABLE SURGE OVER THE LAST DECADE. IN CALIFORNIA, AS IN MANY OTHER STATES ACROSS THE NATION, SENATE BILL 946 IN 2012 EMPOWERED HUNDREDS OF THOUSANDS OF FAMILIES BY GRANTING THEM ACCESS TO IN-HOME AND COMMUNITY-BASED INTERVENTIONS FOR CHILDREN DIAGNOSED WITH AUTISM SPECTRUM DISORDER (AUTISM SPEAKS, N.D.).

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A

pplied behavior analysis (ABA) is widely recognized as one of the most effective treatments for autism and related neurodevelopmental conditions. However, it should be noted that ABA is facing criticism due to its rigid and standardized approach to behavior modification. These criticisms highlight the ongoing debates and discussions within the field of applied behavior analysis, aiming to promote a more comprehensive and ethical framework for understanding and modifying behavior.

Nevertheless, ABA has been a prominent treatment option for families and autistic children. Significant shifts in contemporary ABA approaches aim to prioritize individual autonomy, self-determination, and respect for neurodiversity. Unfortunately, these services are typically available only until a designated age, after which they are often cut off by insurance or other funding. Once in adulthood, this population experiences an abrupt drop-off and extreme lack of services. Thus, despite years of therapy and intervention, these young adults may not be adequately prepared for the next chapter of their lives.

As many of the children who started in-home ABA in 2012 are now entering the workforce, we must pivot our priorities and support systems to identify appropriate resources that will facilitate their independence and success in their new roles.

A greater appreciation for neurodiversity at work

Fortunately for this generation, greater awareness and understanding of neurodiversity in the workplace have been generated over the past several years. Neurodiversity, as defined by the Center for Neurodiversity and Employment Innovation, is “the concept that differences in brain functioning within the human population are normal, and that brain functioning that is not ‘neurotypical’ should not be stigmatized or excluded (University of Connecticut, n.d.).” This perspective captures the idea that all individuals work, think, and communicate differently, especially those with diagnoses or identified learning differences. Hiring diverse employees with unique and highly sought-after skill sets enhances innovation and other company benefits.

However, this newfound appreciation for neurodiversity doesn’t always translate to great jobs for those who identify as neurodiverse. Harvard Business Review notes, “the neurodiverse population remains a largely untapped talent pool,” commenting that the unemployment rate for this group can be as high as 80% (Austin & Pisano, 2017). According to Autism Speaks (n.d.), “Of the nearly 18,000 people with autism who used state-funded vocational rehabilitation programs in 2014, only 60% left the program with a job. Of these, 80% worked part-time at a median weekly rate of $160, putting them well below the poverty level.”

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Despite the beneficial systems and access to treatment put in place over the last decade, the number of young adults who can successfully transition into independent living and pursue meaningful careers is limited. How do we create foundations for our young people to grow up and take the leaps to their dream careers like their neurotypical peers? Two key pathways can be pursued:

Pathway one: Executive functioning

To begin with, we must build treatment plans to pre-plan for successful transitions. We need to focus on areas such as building independence, organizational skills, and effective social skills. More specifically, executive functioning skills are a particular area of development that must be prioritized.

These skills include working memory, cognitive flexibility, and self-control, play a pivotal role in helping us stay organized, problem solve, regulate emotions, plan ahead, remain flexible, and many other critical proficiencies necessary to make everyday decisions and be successful across a multitude of settings.

Neither neurotypical nor neurodiverse children are born with these skills, so intentional teaching and practicing over the years is critical to developing them.

Like many other skills, executive functioning develops rapidly between the ages of three to five. According to Harvard University, “Evidence also shows that early interventions aimed at improving these capacities before a child enters school can have beneficial impacts across a broad array of important outcomes (Center on the Developing Child, n.d.).”

But, of course, engaging a child in a skills-training program can be challenging. So how can we achieve this type of intervention? Person-centric programs are one method to increase a child’s motivation to participate in learning sessions that promote executive function skills. These programs focus on the values, preferences, and natural motivators of each individual child to identify goals that are most meaningful and motivating to the child or family.

For instance, consider a young child who wants to create and sell their artwork. How can their treatment team expound upon their interests and hobbies to meet treatment goals while building on executive functioning skills? They might: 1. Set goals around their attention skills to help them concentrate on their project.

2. Introduce positive coping skills when their art does not come out how they prefer.

3. Promote social skills to help them approach potential clients to sell their work.

4. Focus on self-monitoring tools to help them keep track of their self-established goals.

SKILLS FOR LIFE

5. Give them routine-making exercises to keep them focused and build self-sustaining systems they can use, pivoting as their personal goals and hobbies change.

Pathway two: Encouraging neurodiversity in the workplace

Another approach to expanding opportunities for neurodivergent people within the workforce is to continue raising awareness and educating employers. As previously mentioned, a growing number of large companies are recognizing the significant talents and extraordinary skills neurodivergent people bring into the workplace. However, more education and training for employers are still needed concerning creating environments that attract, onboard, and mentor the unique needs of neurodivergent employees.

The Employer Assistance and Resource Network on Disability and Inclusion (n.d.) describes many ways large companies are providing career opportunities. For example, Ford Motor Company partnered with Autism Alliance in Michigan to identify which of their positions would best match the talents and skills of autistic employees. In 2015, JP Morgan Chase developed a program focused on creating inclusive environments for neurodivergent employees and offering training to current managers on effectively navigating potential communication issues.

The US Department of Defense expanded its hiring outreach efforts in 2020 through a pilot program that recruited autistic workers and offered necessary accommodations, mentorship, and professional development to support their growth.

Despite these efforts, many young neurodivergent adults still lack employment training that translates into opportunities comparable to those of their peers. Yet, they possess highly sought-after skill sets that can be an ideal match for employers. In one study, Hewlett Packard Enterprise’s neurodiverse testing teams were reported to be 30% more productive than others (Austin & Pisano, 2017). In another report, James Mahoney, executive director and head of Autism at Work at Chase, stated, “Our autistic employees achieve, on average, 48 percent to 140 percent more work than their typical colleagues, depending on the roles (Creighton, 2019).”

Although many diversity, inclusion, equity, and belonging programs prioritize inclusive environments, they often overlook neurodiversity and practical accommodations as considerations while striving to create more inclusive and productive workplaces for different learning styles. Employers can take several steps to embrace and encourage neurodiverse thinking.

1. Be curious and ask questions. It is important to understand the individual needs and preferences of those you interact with.

2. Celebrate and value differences. Recognize individual talents and find opportunities to embrace and celebrate them through projects or assignments.

3. Use various teaching methods to ensure information is being delivered meaningfully.

4. Create psychologically safe environments where employees feel heard, valued and, can openly share their needs and goals.

Creating inclusion for all

Implementing these leadership behaviors broadly across employee and workplace environments has immense benefits to company culture. After all, neurodiversity defines all of us. As the era of diversity and inclusion takes off and reshift priorities for companies, understanding and championing the need for neurodiversity is equally important for society to help meet

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the needs of the workplace, expanding on innovation and creating pathways of independence and achievement—for all.

References: Austin, R. D., & Pisano, G. P. (2017). Neurodiversity as a competitive advantage. Harvard Business Review, May-June 2017, p. 96-103. https://hbr.org/2017/05/neurodiversity-as-a-competitive-advantage Autism Speaks. (n.d.). California State-Regulated Insurance Coverage. https://www.autismspeaks.org/california-state-regulated-insurance-coverage Autism Speaks. (n.d.). Autism statistics and facts. https://www.autismspeaks.org/autism-statistics-asd#%3A~%3Atext%3DOf%20 the%20nearly%2018%2C000%20people%2Cwell%20below%20 the%20poverty%20level Center on the Developing Child. (n.d.). What is executive function? And how does it relate to child development? Harvard University. https:// developingchild.harvard.edu/resources/what-is-executive-functionand-how-does-it-relate-to-child-development/ Creighton, K. (2019, February 11). Best practices for training and developing employees with autism. HR Daily Advisor. https://hrdailyadvisor.blr.com/2019/02/11/best-practices-for-training-and-developing-employees-with-autism/ Employer Assistance and Resource Network on Disability Inclusion. (n.d.). Neurodiversity hiring initiatives & partnerships. https://askearn. org/page/neurodiversity-hiring-initiatives-and-partnerships University of Connecticut. (n.d.). The Center for Neurodiversity & Employment Innovation. https://werth.institute.uconn.edu/neurodiversitycenter-2/ Jagmeet Kaur Sangha is a Board-Certified Behavior Analyst. For over a decade, Jagmeet has worked in homes and schools, providing applied behavior analysis (ABA) services to children, supporting educators, and offering parent training consultations to caregivers.

She is invested in educating the community and helping families and individuals receive top quality behavior intervention services.

Jagmeet uses the science of ABA to promote well-being and advance individuals, organizations, and society through connection, education, and behavior science.

Her organization, Behavior Pivot Consulting, works with employees and employers to create neuro-inclusive communities within the workplace by focusing on identifying and building on individual strengths, promoting self-advocacy, and offering person-centered solutions related to workplace wellness.

Website: https://www.behaviorpivot.com Email: info@behaviorpivot.com

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ALL THINGS

OT

Stability Before Mobility: The Building Blocks of Handwr iting

By Laura A. Ryan, OT, OTR, OTD

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OCCUPATIONAL THERAPY

T

he article entitled Stability Before Mobility: The Foundational Skills for Whole-Body Strength, Stability, and Coordination in the Issue 13 of Exceptional Needs Today expanded the bottom three tiers of the graphic below to outline how these larger body systems play a crucial role in handwriting. This article will now explore the top two tiers to better understand the developmental skills leading to effective handwriting.

the hand that are needed for fine motor skills. Cari Ebert, an Early Intervention speech pathologist, wrote an excellent social media post on how writing begins. Within this post, she outlined many developmental play opportunities and how the movement patterns they offer contribute to writing.

For example, gross motor tasks such as using playground equipment or walking on uneven ground; play opportunities such as playing in a sandbox or water, using tools, and reading books all work on skills that are necessary for handwriting (Ebert, n.d.).

Fine motor skills follow a conventional developmental pattern.

Typically, the expected movement pattern to develop fine motor skills starts with a raking grasp wherein all fingers drag an object like a block into the palm of the hand. The fingers then close around the object. This is an effective method for grabbing; however, it is difficult to do something with the grabbed object as it is essentially stuck in the palm.

Figure 1 Figure 1 shows the hierarchy of body systems, ultimately leading to smooth and legible handwriting.

Foundational fine motor skills

The hand is an intricate system of muscles and joints that combine to provide mobility unparalleled by any other part of the body. Exploration and engagement in gross motor tasks create the muscle development and movement patterns in

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For example, a child who uses this grasp to pick up a Cheerio typically consumes it straight from the palm. Moving something from the palm of the hand to the fingertips, where it is more accessible, uses two movements: translation and opposition. Translation happens when the object is moved between the palm and fingers, such as moving a block from the palm to the tips of the index finger and thumb to drop it into a slot. As adults, we often use translation when handling change received at a cash register, dropping it into our wallets.

The addition of the thumb creates an especially important motion called opposition, which is when the thumb moves over to touch the tips of each finger. This movement allows the hand to cup or cradle an object without dropping it and to pinch something, such as a pencil, while simultaneously manipulating it.

The developmental movement pattern of translation and opposition typically moves from the pinkie side of the hand over to the index/long finger or just the index finger. This sequence prepares the child for more intricate movements that use the index finger and arguably create the most refined pinch of the hand, called the tip pinch.

OCCUPATIONAL THERAPY

Two secondary movement patterns used when handling a tool are rotation and shift. Rotation occurs when an object is twirled in the fingertips, such as adjusting a crayon to use the section with a waxier surface. The shift occurs when this movement is more linear, like holding and fanning playing cards. This brings up an important point regarding muscle development in the hands. The flexor and extensor muscles of the fingers cause the hands to open and close, an essential aspect of grabbing and releasing an object. The thumb draws its strength from flexors and extensors, as well as from oppositional muscles found in the fatty pad of the palm at the base of the thumb.

Equally important are the tiny muscles in the palm called the intrinsic muscles They facilitate in-hand manipulation, securely holding one object while manipulating a second object (such as dropping pegs one by one into a slot) and separating the fingers.

Handwriting mechanics

As noted in the previous article in Issue 13, handwriting is an incredibly intricate and systemsrelated task. Effective and efficient handwriting is the result of all the systems above working in fluid unison. Seo (2018) asserts, “Before beginning the act of handwriting, children need to develop readiness skills for forming letters, such as the comprehensive abilities of various sensorimotor systems, the development of large and small muscles, visual perception, fine motor skills, and in-hand manipulation skills.” Like the development of fine motor skills, pencil grip typically happens in a developmental sequence, although variations can occur among children.

Typically, a child begins with a gross grasp, where the pencil or crayon is held with all four fingers, while the thumb is wrapped

around the fingers. This grasp allows for broad writing, such as linear scribbles.

The second pattern in this sequence is observed as the child holds the pencil across their hand, beginning to stabilize it with their thumb. This grip causes the child to hold their arm in the air with the elbow pointing upward.

The third pattern involves greater thumb movement in the grasp and therefore, more developmentally mature. In this grasp, the pencil can be gripped with multiple fingers or just one finger, with a second finger resting against it for stabilization.

While more refined, this pencil grip draws more movement from the forearm or wrist than from the fingers. Finally, in what is felt to be the most developmentally mature grasp, the pencil is held between the fingertips, with the fingers finessing the pencil movement. This dexterity allows the writer to negotiate the loops, diagonals, and sharp angle changes seen in letter formation.

In 2022, Taylor Swift caused a furor not because of the release of her new album “Midnights” but because of her unconvention grip showcased in a music video for one of the songs from that album. Social media (and the OT world) were ablaze with questions and speculations on her unusual pencil grip, in which she stabilized her pencil between the index finger and long fingers with the thumb giving light stability. This pencil grip, called a “Poet’s grip” or an “adaptive tripod grasp,” is a less familiar grasp and has been found to be helpful for writers that have reduced muscle tone or arthritis (Schwedel, 2022).

What is important to take from Taylor Swift’s atypical grasp has

Screengrab from YouTube

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no discernible impact on the quality, legibility, or speed of her writing. This thought could be relevant when evaluating the efficacy of a child’s pencil grip. When evaluating the efficacy of a pencil grip, the focus should be on how the grip supports the child’s writing needs, both now and in the future. Pencil grip typically solidifies by the second grade and can be difficult to adjust in the later years. School-based OTs likely see a myriad of pencil grips that may need to be modified. However, if the child’s pencil grip allows for legible handwriting at a speed commensurate with the speed of learning and allows the child to write for the length of time expected, then it can be argued that the pencil grip, no matter how it looks, supports the writing needs. We are all unique, and that includes how we hold our pencils!

Dawson-Amoah, K. & Varacallo, M. (2022, July 25). Anatomy, shoulder and upper limb, hand intrinsic muscles. StatPearls. www.statpearls. com Growing Hands-On Kids OT Perspective Schwedel, H. (2022, October 24). Why does Taylor Swift hold her pencil like that? Slate. https://slate.com/culture/2022/10/taylor-swiftmidnights-anti-hero-video-pen-photos.html Seo, S. M. (2018). The effect of fine motor skills on handwriting legibility in preschool age children. Journal of physical therapy science, 30(2), 324–327. https://doi.org/10.1589/jpts.30.324

Resources Ebert, C. (n.d.). Cari Ebert Seminars. https://www.cariebertseminars. com/

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

She has been practicing for 30-plus 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

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PARENTAL SUPPORT

Preparing for Your Neurodivergent Child’s Transition To Adulthood

By Jan Stewart

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PARENTAL SUPPORT

ONE MORNING, MY 27-YEAR-OLD AUTISTIC SON CALLED ME FROM HIS NEW JOB: “MY BOSS TOLD ME TO WATCH TV FOR THE REST OF THE DAY.” THIS WAS BECOMING A REGULAR OCCURRENCE, AND ANDREW UNDERSTANDABLY DIDN’T FEEL PRODUCTIVE OR VALUED. HE WANTED TO WORK HARD AND MAKE A MEANINGFUL CONTRIBUTION.

I

house. Since then, David and I have taken turns waking him each morning, preparing his daily meals, ensuring he takes his medications, and overseeing his getting ready for work. He loves living alone, even though we pay all his bills and have unplugged his stove and oven due to potential safety concerns.

And it gives us comfort and security to have him close by.

However, we were unprepared for the entirely new challenges that came with Andrew’s transition into adulthood. As I learned, this is extremely common, and many parents lack guidance on what to do and where to turn. Challenges can encompass various areas, including housing, employment, legal guardianship, and the ongoing financial realities of caring for a neurodivergent adult child.

Finding and keeping meaningful employment can be difficult.

The University of Connecticut’s Center for Neurodiversity and Employment Innovation (n.d.) reports that “unemployment for neurodivergent adults runs at least as high as 30–40%, which is three times the rate for people with disability, and eight times the rate for people without disability.” There’s also substantial underemployment. Andrew looks “different,” has limited cognitive capability, and has a major speech impediment that makes him difficult to understand. He cannot maintain eye contact and doesn’t understand lines of authority, boundaries, or social cues. He takes more of his supervisor’s time and needs more time off for health care appointments than other employees.

n addition to autism, Andrew has co-occurring Tourette syndrome, obsessive-compulsive disorder (OCD), attention deficit hyperactivity disorder (ADHD), and significant learning disabilities. My husband David and I fought hard throughout his youth to find the right healthcare providers and ensure his medications and therapy were effective. We sought schools truly willing to partner with us. We learned to trust our instincts and talk openly to Andrew and his sister. Most importantly, we learned to accept and embrace the fact that our lives would not unfold as we’d hoped or dreamed.

Finding the right housing fit

Not every neurodivergent person requires supportive housing, and there is a broad continuum of options, from full-time residential care to supportive independent living.

When Andrew turned 21, we started looking for potential living arrangements, realizing his inability to care for himself.

We were in no hurry, but we knew the wait lists—not only in Toronto, where we live, but throughout North America—could be years long. It’s terrible.

So, what did I do? I put Andrew’s name on every available waitlist and reached out to as many parents of neurodivergent adult children as possible. I called mental health/autism/ developmental services agencies and relevant government departments. I was like a dog with a bone. It took nearly a year, but through research and referrals, I found a lovely private group home just fifteen minutes from our house. Fortunately, we could afford it, but there are viable alternatives for those who can’t. These include organizations specializing in supportive housing, such as the Reena Foundation and LIGHTS in Toronto, for people with developmental and intellectual disabilities. Some families take in adult children like Andrew.

Parents might consider renting an apartment for their child and either bringing in respite care or having a pull-out couch or extra room for a support worker if needed. It’s not easy and may involve creativity, but options exist; you just need to dig, research, and persevere!

After ten years in the group home, Andrew and we believed he was ready to transition to supportive independent living. We found a sunny one-bedroom apartment five minutes from our

Securing meaningful employment

The good news is that governments offer job assistance programs. Andrew obtained his first job through such a program, which trained him on both the technical aspects and workplace etiquette.

During Andrew’s childhood, I learned the importance of insisting on an integrated partnership approach with every professional involved in his care. This applies to employment too. As I highlight in Hold on Tight, I witnessed a significant contrast between Andrew’s previous employers and his current employer, Rogers Communications, one of Canada’s leading telecommunications companies.

In his first job, Andrew excelled as a cashier at a major retailer.

Customers lined up at his station because he enthusiastically engaged with them, knew their names, and brightened their days. New management, however, suddenly changed his duties and asked him to stock shelves in the back without any explanation. It quickly became apparent that they were needlessly discriminating against him as they didn’t want an obviously “disabled-looking” employee interacting with customers on the front line. I was irate; I intervened and rectified the situation, but trust had been broken.

His next employer really wanted to do right by Andrew, their first autistic employee, but they lacked direction. Their bureaucracy hindered collaboration with us, and they treated him like a child. They gave him one hour of tedious work each Exceptional Needs Today | Issue 14 | 59

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morning—and boring work is not suitable for a brain with ADHD—then told him he could watch TV “as a reward!” This was certainly not meaningful or productive.

and otherwise. The extensive application process involves multiple questionnaires and documentation from healthcare professionals. We ensured Andrew understood and supported us throughout this process. He finds comfort and security in having a guardian and loves joking with me about it. When I asked him to make his bed the other day, he turned to me and quipped, “But Mom, you’re my guardian; you should make it!”

Ensuring a financial plan for tomorrow

If you haven’t created a comprehensive financial plan, now is the time! When your child is young, you may be uncertain about their future capabilities and needs or the duration of necessary financial support. Government subsidies aside, it can be expensive: uninsured medications, private therapy, supportive housing, and more. It’s, therefore, essential to start planning as early as possible and be conservative. And if you lack financial expertise, I strongly recommend using a fee-based financial planner who provides objective advice and does not sell products. Financial planning can have a significant impact on both your child’s and your futures.

In contrast, Rogers has translated well-meaning intentions into action and embraced true inclusivity. Before his employment began, Andrew and I held an in-service education session with his managers, Human Resources, and the Well-Being Department, explaining Andrew’s profile, strengths, and how his disorders translate into the workplace (primarily impulsivity and anxiety). We offered recommendations for optimizing his success. Andrew has been largely successful over the past four and a half years because Rogers treats us as true partners. They listen, respect our input, and follow our advice. They have customized accommodations accordingly.

For example, they set consistent work hours for Andrew due to his difficulties with change and transitions. They enlisted a job coach for both Andrew and the company, not only initially to help with his integration but on an ongoing basis. They call me whenever a minor issue arises, such as Andrew being distracted at work, so it doesn’t mushroom. Their investment has yielded a valued, hard-working employee who loves his job and aspires to be Rogers’ best employee, not their “bestdisabled” employee.

Determining the need for legal guardianship

Many people with mental health or neurodevelopmental challenges do not need a legal guardian. Andrew, however, lacks the capacity for responsible decision-making. Each jurisdiction has different requirements and processes, and guardianship is a major responsibility, both as a fiduciary

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Andrew has been on a nonstop roller coaster journey and knows it will continue. However, when I look at him now, I feel immense pride. He has a wonderful full-time job, a core belief in helping others, and an infectious charm. David and I have done our best to secure his future and ours, realizing there will always be new challenges thrown our way. Don’t be afraid to face the future: Persevere! You are not alone and can succeed!

Have hope, and hold on tight!

References: University of Connecticut. (n.d.). The Center for Neurodiversity & Employment Innovation. https://werth.institute.uconn.edu/ neurodiversitycenter-2/ Jan Stewart is a highly regarded mental health and neurodiversity advocate, author, and recipient of the prestigious Mom’s Choice Award®. Her best-selling memoir Hold on Tight: A Parent’s Journey Raising Children with Mental Illness describes her emotional roller coaster story of parenting two children with multiple mental health and neurodevelopmental disorders. Her mission is to inspire and empower parents to persevere, have hope, know they are not alone, and better educate their families, friends, healthcare professionals, educators, and employers. Jan chairs the Board of Directors at Kerry’s Place Autism Services, Canada’s largest autism services provider, is a Today’s Parent columnist on autism, and was previously Vice Chair at the Centre for Addiction and Mental Health. She spent most of her career as a senior Partner with the global executive search firm Egon Zehnder. Jan is a Diamond Life Master in bridge and enjoys fitness, genealogy, and dance.

Website: janstewartauthor.com/ Instagram: www.instagram.com/janstewartauthor/ Facebook: www.facebook.com/janstewartauthor/

ATTENTION: PARENTS & PROFESSIONALS

Let's Start Talking About Autism!

Tosha Rollins is a Licensed Professional Counselor in South Carolina, and the owner of Rollins Counseling, LLC. In 2018 she started the Autism in Action Podcast to help families connect with autism resources, services, and support. Tosha also enjoys serving the community as an autism advocate and has served as a volunteer for the Champion Autism Network and has worked with Lead with Love Training Company as a Safety Plan Coordinator. Tosha is a public speaker & published author. Her newest book is Autismology: An Autism Dictionary was published in 2022 by Future Horizons, Inc.. She loves adventures, traveling, nature, and spending time with her family. When she is not working, she is spending quality time with her family and planning her next adventure. Tosha is married with four children, two of whom are now autistic adults.

Autismology is a much-needed resource for parents and people living with autism. Capturing key phrases in the increasingly accepted neurodiversity movement, Tosha gives readers much-needed information to better navigate the complex medical systems affecting the care of themselves or loved ones. Tosha gives readers a fresh perspective on the ever growing culture of neurodiversity. She provides readers the language of autism, a much needed step in solidifying a movement that has been around for almost 30 years. This work is necessary for any professional working with mental health who wishes to serve people with autism. Autism Spectrum Disorder remains ever pressingly challenging to live with and this text is a much needed edition to understanding the language of its increasingly accepted culture.

Forward by Sean Inderbitzen, LCSW http://seaninderbitzen.com/

LEARN MORE AT WWW.TOSHAROLLINS.COM

FINANCIAL FOCUS

Discussing Fair and Equal Inheritance When There Are Special Needs

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

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FINANCIAL FOCUS

MANY FAMILIES HAVE MORE THAN ONE CHILD, AND SO MANY PARENTS WANT TO ENSURE THEY TREAT EACH CHILD EQUALLY. THIS FEELING OF EQUALITY CONTINUES FOR THEIR CHILD’S LIFETIME AND THROUGH THE INHERITANCE OF A PARENT’S ASSETS. IT IS CRITICAL TO DISCUSS THE NEEDS OF EACH CHILD. THAT DISCUSSION TYPICALLY RESULTS IN AN UNDERSTANDING THAT THEIR CHILD WITH A DISABILITY WILL NEED MORE LIFE SUPPORT, TRANSLATING INTO A HIGHER LEVEL OF FINANCIAL NEED. It is very common to feel uneasy about determining the amount of money the child with a diagnosis may need for their lifetime of support, especially when parents have other children they want to treat fairly.

15% to each of your other children [if you have three children]. These percentages are not equal, but they may be fair because your other two children may not have the same lifetime support needs as your child with special needs.

When we have this conversation with the families we serve, we call it our “Fair and Equal Conversation.” Many parents understand that their child with a disability will need more support during their lifetime than their children without a disability, and that support costs money. The fact that most families do not have an endless supply of money can cause some challenges. Parents fight the thought of their other children feeling slighted and holding resentment towards their sibling with a diagnosis and towards the parent if their sibling receives all or almost all the parent’s assets. However, for most families, their child with exceptional needs will need more support—and therefore more money—to pay for that support than their other children.

You will need to define “fair” for your family. Please feel free to learn more at www.ASpecialNeedsPlan.com,

The question is, “How much more?”

This question can only be answered by putting pen to paper and determining the true cost of a lifetime of support.

Everyone’s needs, and therefore calculations, will be different, but each calculation will lead to a definitive number that will allow you to answer your question.

You must consider the following items in your calculation: 1. Reliance on government benefits a. Which benefits do or will your child qualify for? b. What do those benefits pay for? How much do they pay? c. Will they continue to pay for those items? d. How much reliance do you want on government benefits? e. How do you protect these assets, so they are secure for your child’s lifetime?

2. Define the lifestyle of your child.

3. Determine the cost of that lifestyle.

4. Choose an appropriate inflation rate.

5. Complete a Net Present Value Calculation By following these steps, you can find how much money your child with special needs will need for their lifetime.

With this number, you can answer your question, “What percentage of your assets will you need to leave your child with a diagnosis?” Your answer may necessitate leaving 70% of your assets to your child with a disability and only

Contact a financial advisor who specializes in serving families with special needs for more information on how to prepare for the future. The team at A Special Needs Plan is driven by their purpose of Leading Families to Independence through an ongoing, multi-generational plan. We are passionate about families confidently moving forward.

Ryan F. Platt, MBA, ChFC, ChSNC, CFBS, is a registered representative of and offers securities, investment advisory, and financial planning through MML Investors Services, LLC, Member SIPC. Securities and investment advisory services are 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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STAYING FIT AND HEALTHY

The Intersection of Obesity and Autism

By Carol Tatom, BA.HSE, CHW OBESITY IN THE AUTISM POPULATION DIFFERS FROM OBESITY IN NEUROTYPICAL POPULATIONS. MANY INDIVIDUALS WITH AUTISM HAVE COMORBID DIAGNOSES AND TAKE MEDICATIONS THAT CAUSE WEIGHT GAIN AS A SIDE EFFECT. “THESE CONCERNS ARE COMPOUNDED BY THE USE OF PSYCHOTROPIC MEDICATIONS, ESPECIALLY MEDICATIONS LIKE RISPERIDONE AND ARIPIPRAZOLE, WHICH CAN CAUSE SEVERE WEIGHT GAIN AND METABOLIC PROBLEMS” (WANG, 2014).

I

t is also more challenging for people with autism to exercise, especially if they experience aggression or elopement challenges jeopardizing their safety and that of others. According to parent-reports, 60% of autism spectrum disorder (ASD) kids need more specialized supervision when it comes to facilitating healthy forms and amounts of exercise. (Must et al., 2015). Parents of children with ASD 64 | Exceptional Needs Today | Issue 14

expressed concern that adults lacked skills needed to include their child in group physical activities and cited the resulting smaller social circles and exclusion as reasons why their children didn’t get enough daily exercise.

Daily dietary habits pose challenges as well because many autistic people have limited diets and food aversions. A recent

STAYING FIT AND HEALTHY

study noted that food selectivity was observed in “84.8% of children with ASD had food selectivity and BAMBI food refusal scores were significantly higher for those aged two to five years” (Senguzel et al., 2021). These factors collectively impact obesity rates among individuals with autism.

A history of obesity in society

Obesity was not looked down upon before we knew being obese put us at higher risk for additional health problems.

Historically, body fat often symbolized wealth and wellbeing, especially during famine or other food scarcity (Ferris & Crowther, 2011). Current research has proved that excess weight is linked to many preventable health problems. The autism community has seen a notable rise in physical health problems related to obesity. A study revealed that “rates of unhealthy weight were significantly higher among children with ASDs ages two to five years and among those of nonHispanic white origin” compared to a general sample of the American population (Hill et al., 2015). The significance of this topic has increased with time as the number of people impacted by autism continues to rise. Understanding the historical impact of obesity on autistic individuals aids when creating wellness intervention plans unique to this population.

Finding ways to support health better

People with autism who experience obesity often face increased challenges with social interactions, poor self-esteem, anxiety, and depression, which heightens the risk of diabetes and heart disease in later years. “A 2016 review of medical records from 48,762 children with autism in the United States showed that they also have significantly higher rates of other obesityrelated conditions, such as hypertension, high cholesterol, and nonalcoholic fatty liver disease” (Arnold, 2018). Additionally, it was found that the more severe the level of autism was for an individual, the more likely they were to become obese: “Among autistic children, those with severe autism traits— based on parent reports—are more than three times as likely to be obese as those with milder traits” (Zeliadt, 2018). Parents of children with autism have written journals and blogs about their concerns for their children’s health and have reached out through social media to other parents with hopes of finding a balance between weight and health. They also collaborate in developing innovative ideas to address this subpopulation.

People’s lived experiences help us understand how to support people with autism and their health better.

appears to increase the potential for being overweight and obese (Kahathuduwa et al., 2019). Further research investigates this topic each year to try to pinpoint why this population is at a much higher risk of comorbid conditions. Studies in this area can be used to establish statistics for medical intervention and prevention purposes and for advocacy groups that would support beneficial legislation.

Acquiring research on obesity within autism populations

Understanding the social challenges surrounding obesity

Researchers have used genetics and biology to determine if there is a specific gene linked to autism that contributes to the problem of obesity. Some epidemiologic studies suggest maternal obesity is a risk factor for a child’s neurodevelopmental disorders (Suren et al., 2014). This study showed one independent factor from the applied sciences lens.

Overall, research confirms that having an autism diagnosis was a risk factor for obesity, with multiple studies suggesting ASD

Obesity in autism creates additional challenges for those struggling with social interactions, creating and maintaining friendships, and trying to fit in. “Autistic people are more likely to experience poor mental health than their non-autistic counterparts, with higher levels of anxiety and depression being particularly common” (Sedgewick et al., 2020). This specific challenge might negatively affect interpersonal relationships due to perpetuated stereotypes about obesity.

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STAYING FIT AND HEALTHY

Some people may wrongly stereotype people who are obese without taking into consideration health problems that may be contributing to their weight.

The social structure of the position system comes to mind with this area of research because many people may wrongly perceive overweight individuals as inherently lazy, unhealthy, greedy, etc., regardless of someone’s actual personality, actions, and health. This kind of labeling can also be an issue for the neurodivergent. Because there are also spectrumspecific stereotypes and prejudices, autistic individuals who are also obese may face unique social barriers. It is important to not label this population as less than their neurotypical peers in any way and to support prevention programs that help increase self-esteem in people impacted by autism.

References Arnold, C. (2018, January 24). Weighing up autism’s obesity crisis.

Spectrum News. https://www.spectrumnews.org/features/deep-dive/weighingautisms-obesity-crisis/ Ferris, W. F., & Crowther, N. J. (2011). Once fat was fat and that was that: our changing perspectives on adipose tissue. Cardiovascular journal of Africa, 22(3), 147–154. https://doi.org/10.5830/cvja-2010-083 Hill, A. P., Zuckerman, K. E., & Fombonne, E. (2015). Obesity and autism. Pediatrics, 136(6), 1051–1061. https://doi.org/10.1542/peds.2015-1437 Kahathuduwa, C., & et al. (2019). The risk of overweight and obesity in children with autism spectrum disorders: A systematic review and meta-analysis. Pediatric Obesity. https://doi.org/10.1111/obr.12933 Must, A., & et al. (2015). Barriers to physical activity in children with autism spectrum disorders: Relationship to Physical Activity and Screen Time. Journal of physical activity & health, 12(4), 529–534. https://doi.org/10.1123/jpah.2013-0271 Sedgewick, F., Leppanen, J., & Tchanturia, K. (2020). Autistic adult outcomes on weight and body mass index: a large-scale online study. Eating and weight disorders: EWD, 25(3), 795–801. https://doi. org/10.1007/s40519-019-00695-8 Şengüzel, S. & et al. (2021). Impact of eating habits and nutritional status on children with autism spectrum disorder. Journal of Taibah University Medical Sciences. 16(3), 413-421. https://doi.org/10.1016/j. jtumed.2020.11.010.

Surén, P., & et al. (2014). Parental obesity and risk of autism spectrum disorder. Pediatrics, 133(5), e1128–e1138. https://doi. org/10.1542/peds.2013-3664

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Wang, P. (2014). CDC study flags high rate of obesity among teens with autism. Autism Speaks. https://www.autismspeaks.org/science-news/cdc-study-flags-highrate-obesity-among-teens-autism Zeliadt, N. (2018). Research adds heft to link between autism and obesity. Spectrum News. https://www.spectrumnews.org/news/research-adds-heft-linkautism-obesity/ Carol Tatom, BA.HSE, CHW has a bachelor’s degree in Human Services and is a licensed community health worker in Texas. She is also an autism parent, advocate, and professional. Carol currently works at Life Skills Autism Academy and has served on the executive board for the Texas Society of Public Health Education. She has also volunteered for the Dallas Chapter of Autism Speaks. Carol enjoys working with other autism families to connect them to services, support, and resources in their region and to help bridge the gap many families struggle with after receiving an initial autism diagnosis.

LinkedIn: www.linkedin.com/in/carol-t-baa07a152

MY WORD

The Grey Area of Autistic Children With Low Support Needs

By JC Ellinger

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MY WORD

AS THE PARENT OF AN AUTISTIC TEENAGER WITH LOW SUPPORT NEEDS, IT CAN BE REASSURING TO SEE HIM ACCEPT AUTISTIC LABELS WITH A CAREFREE NATURE, WASTING MINIMAL ENERGY AND WORRY ON THEM. WHILE THOSE WITH GOOD INTENTIONS TRY NOT TO “PIGEONHOLE” OR MAKE ASSUMPTIONS ABOUT OTHERS, HUMANS CAN ONLY RELY ON WHAT THEY KNOW. FOR SPECIALISTS LIKE PEDIATRICIANS, THIS KNOWLEDGE BASE IS EXPECTED TO BE BROAD AND IN-DEPTH; PATIENTS HAVE CERTAIN EXPECTATIONS FOR THE CARE THEY RECEIVE.

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n a recent wellness child visit to the doctor’s office, I was shocked to hear my son’s pediatrician suggest that the removal of an autism diagnosis from his medical chart was warranted. The explanation was a simple, “He seemed OK.” Not only did this catch me by surprise, but it also unveiled what I believe to be deficits in today’s medical training, particularly in pediatric care.

Research written by Jennifer Richler titled, “Autism Grows Up,” discusses the struggles experienced by adolescents with autism spectrum disorder (ASD) who, like my son, fall within a “unique combination of normal or high intelligence and deficits in social understanding.” On the surface, many people previously identified as “high functioning,” are now more appropriately defined as individuals with low support needs who can blend in with their neurotypical peers. Yet, despite their average to above-average cognitive abilities, they still share the same characteristic trait as others with autism: difficulty with social interaction (Richler, 2015).

According to research about the stigmas affecting autistic people and their families, “the term stigma dates back to the Ancient Greek practice of cutting or burning a mark into a person to brand them a slave, traitor, or criminal, the mark of someone to be avoided” (Turnock, Langley & Jones, 2022) This bold historical definition highlights the weight behind how stigmas are perceived and used today to significantly alter a person’s role, value, and place in society. Yet, we are all guilty of stigmatization, also known as labeling or stereotyping. Is it human nature?

Well, you might find a range of answers, but I believe it boils down to a combination of human innateness and social influences. National Public Radio (NPR) science correspondent Nell Greenfieldboyce (2017), reports that “researchers say that our brains seem hardwired to create social categories that influence how we see others.” Many still believe that people with autism must exhibit blaring characteristics and behaviors that, in essence, showcase their differences. However, like my son, he exhaustively adapts to his social parameters to blend in with his peers, and once at home, he stims to his heart’s content. Autistic individuals with low support needs straddle a delicate line in terms of how they look to society around them.

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MY WORD

In the end, our local regional center confirmed no primary care physician or pediatrician can “remove” an autism diagnosis that has been clinically tested.

They, along with others like my son, are bordering “normal” but maybe not “normal” enough.

And yet, it is this unique combination of intelligence that has allowed my son to thrive in academics with no present need for formal therapy offset with social struggles a primary care physician is unable to clearly understand and thus draw inaccurate and insensitive care. Katharine Zuckerman, a pediatrician at Oregon Health & Science University, says “Autism should be something that primary care physicians are really comfortable with, like asthma or attention deficit hyperactivity disorder (ADHD), but it’s not…I can’t actually diagnose your child with autism.” As parents, we understand that children grow and develop in phases. Having my son’s autism diagnosis front and center on his medical chart provides a medical explanation should a behavior emerge or reemerge. Because it can and, from my experience, it has on several occasions.

In the end, our local regional center confirmed no primary care physician or pediatrician can “remove” an autism diagnosis that has been clinically tested. An echoing pediatrician, Dr. Zuckerman, speculates that primary care physicians and pediatricians lack autism disorder training and thus do not have the knowledge to accurately support or understand behaviors related to ASD. I offer a kind reminder to seek out a specialist who can provide the proper guidance AND has the knowledge and training to effectively address your child’s ever-changing needs. After all, the “classroom” travels wherever a lesson must be taught.

Works Cited Rutsch, P. (2015, April 15). Some doctors still dismiss parents’ concerns about autism. NPR. https://www.npr.org/sections/health-shots/2015/04/15/399801305/ maybe-they-ll-grow-out-of-it-physicians-respond-late-to-kids-withautism Richler, J. (2015, January 1). Autism grows up. Scientific American Mind 26.1: 36-42. https://www.scientificamerican.com/article/ autism-grows-up/

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Greenfieldboyce, N. (2007, January 27). “Stereotypes are only human.” NPR. https://www.npr.org/templates/story/story.php?storyId=7051541 Turnock, A., Langley, K., & Jones, C. R. G. (2022). Understanding stigma in autism: A narrative review and theoretical model. Autism in adulthood: challenges and management, 4(1), 76–91. https://doi. org/10.1089/aut.2021.0005

JC Ellinger brings life stories and experiences as an autism mom to publications such as Exceptional Needs Today and Autism Parenting Magazine.

She is currently working on her first children’s book geared at bringing relatability and support to other ASD children just like her amazing son. JC carries an MBA from Regis University and a BA in Communications from CSU Long Beach. Now, she is returning to graduate school to add an MA in English to her resume and spread her love of writing to young minds.

Facebook: https://www.facebook.com/jc.ellinger.writer Instagram: https://www.instagram.com/jc.ellinger Email: Juliet.ellinger01@gmail.com

Kate Makes it Great!

PARENTAL SUPPORT

Make It Fun!

Lessons in Personal Hygiene When There Are Different Abilities

By Kate C. Wilde

HAPPY OCTOBER EVERYONE! WHETHER YOU ARE PREPARING FOR A BEAUTIFUL SUMMER, THE RAINY SEASON, OR A COOL FALL, I WISH YOU AND YOUR EXCEPTIONAL LOVED ONES A WONDERFUL TIME. ANY TIME OF YEAR CAN BE A TIME OF GROWTH AND EXPANSION. WHEN WE ARE PARENTING, OUR FOCUS ON GROWTH IS OFTEN ON OUR OFFSPRING, BUT WHAT ABOUT YOU?

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C

an you take a moment right now to ponder how far you have come in your growth during your parenting journey and celebrate yourself? All of you have achieved something remarkable! How about cheering for yourself for continuing to search for solutions for your loved one by reading this article?

Celebrate that!

Another point to consider is when your child or adult enters a plateau period. We often think, “Oh no, is this as far as they can go?” or, “Nothing is working! I must be doing something wrong.” If that is you, think this instead: “This plateau is part of their growth and expansion.” Everyone needs time to rest and consolidate all they have experienced and learned. See this plateau as part of their expansion, something to celebrate and embrace.

Now, let’s address some of the interesting questions you have sent in. This article focuses on those of you who sent in selfhelp skill questions.

Valerie from Brisbane, Australia, asks:

My son is four and has autism spectrum disorder (ASD). I am very proud that he can go to the potty all by himself and does all the steps except wash his hands. Any tips?

Hi Valerie, congratulations on helping him gain his potty skills!

I know how helpful that is for him and YOU! Yahoo! My tip is to use what he already likes and find a way to incorporate that into handwashing. For example: •

If he is fascinated by underwater creatures, while he is using the toilet, you could put an octopus, shark, and fish in the sink and then fill it with water. When he has finished, ask him to retrieve the animals. Then, as you dry off his hands, celebrate him for washing his hands.

You can adapt the same idea with lots of things. If he likes numbers, letters, planets, or elephants, put plastic versions of those in the sink and ask him to “rescue” them.

•

If he likes bubbles, fill the sink with water and a little bubble bath.

•

Have his favorite character or soft animal ask him to wash his hands or turn on the tap for them. And then, of course, celebrate with him when he does what they have just asked.

You can start small by using a wet wipe to clean his hands after he has gone to the potty—that way, he gets used to there being another step. Don’t forget to give him a big celebration when he lets you wipe those hands. Gradually progress to going into the bathroom with him and wiping them there before he leaves, and then transition to the sink. Take small steps towards success.

Put washing hands into his regular playtime. For example:

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•

You can create a short story about a boy with his name who just loves washing his hands and “playing” with water in the sink. Maybe in the story, each time this boy washes his hands, it creates a magic spell, and he then gets to go on an adventure to the moon, under the sea, to Disney World, etc.

•

When you are playing with any soft animal or plastic figurine, have them act out stopping to wash their hands.

Do this in a fun, animated way. Maybe make up a fun washing-your-hands song as well.

The key is to use what he loves and make it fun, fun, FUN! P.S. You can also use this concept and idea with any self-help skills.

Binh from Vietnam asks:

My daughter is 11 and will not brush her teeth, she runs aways from me and I must force her to do it. I really don’t like doing this, but she must have her teeth cleaned. What should I do?

Thank you, Binh, for your question. I am sure lots of parents from around the world are happy you asked, as they are in the same situation. The first place to start is to transform the toothbrushing experience into something she wants to run toward instead of away from. Below are some steps you can take to get there: 1. Take away the fight. This is a big step, as it requires you to drop the idea that she “must” clean her teeth right now.

PARENTAL SUPPORT

One thought that has helped lots of parents around the world is this: “It is more important that she learns to like and enjoy this experience than it is to get it done tonight.”

Focus on the long-term goal, not the short-term. Forcing her to do it each night and morning is the very thing that may be getting in her way of doing it willingly by herself.

Part of what she is running away from is the “fight” that is occurring between you and her to get the job done.

Remove the pressure, and you’re halfway there.

2. Give her a chance to explore the idea of brushing her teeth by giving her control. Once you have taken away the “forcing” part, we can focus on the ‘making it fun’ part. When a person has control over an activity, they can explore it without the threat of being “forced” into doing it. Then, they can see what they might like about it. What does it mean to give her control over her tooth-brushing experience? It means: a.

For a period (two weeks is a reasonable time frame to start with), allow her to brush her teeth each morning and evening, but respect her “No,” if she does not do it. Yes, she may go to school or sleep without brushing her teeth. Remember, we are looking at the long-term goal of her wanting to brush her teeth, not the shortterm goal of just getting it done today.

•

•

Get the toothbrush out, put the toothpaste on it, and offer it to her. If she runs away, say, “I left it in the bathroom for you to use when you want.”

If she comes back into the bathroom, give her space. She just might do it by herself in her own time.

If she does not come into the bathroom, you can go to where she is, and at a distance, you could say, “I can help you if you want. Just come closer, and I will help you.” If she runs away, you can say, “That is OK; I will not force you anymore.” It may

take her a couple of days to trust that you will not force her anymore. Once she trusts this, she may get closer to trying it by herself.

3. Make brushing teeth fun and enticing to try. You can do this by: a.

Buy a toothbrush with her favorite color or favorite character on it.

b.

Show her how much fun you are having brushing your own teeth.

c.

Whenever you, your partner, or her sibling (if she has any) brush their teeth, have the whole household come and celebrate them. You could sing a toothbrush song, clap your hands, or award them a certificate saying, “I brushed my teeth today.”

d. Have lots of toothbrushes around that house so she and you can play in a way that has nothing to do with her brushing her teeth. This way, she can interact with and explore them without being concerned that you will get her to brush her teeth. You could: • • • •

Tickle her with a toothbrush.

Spell out different words with the toothbrush.

Take a toothbrush and pretend to clean her soft toy teeth.

Pretend the toothbrushes are drumsticks and bang a drum with them or play the xylophone.

This will give you a starting point for transforming the toothbrushing experience for you and her. For more toothbrush games and ideas, check out the second edition of my book, Autistic Logistics.

Keep sending in your questions! It is a joy to read them, and maybe I will answer yours in the next issue.

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 Autism Abracadabra: Seven Magic Ingredients to Help Develop Your Child’s Interactive Attention Span, 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 worldwide following.

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 outstanding 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

Exceptional Needs Today | Issue 14 | 73

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COMMUNICATION STRATEGIES

Picture That:

Understanding Language Through Visualization

By Karen Kaplan, MS

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COMMUNICATION STRATEGIES

“Words are like a second language,” said Dr. Temple Grandin, an inventor, author, speaker, and woman who lives each day on the autism spectrum. Temple has shared the challenges she experienced understanding the words used by others, explaining that she learned their meaning through connecting their “pictures” to each other.

In her opinion, nouns and verbs were easy, but spatial words like “over” and “under” were harder to visualize. Also, adverbs presented a challenge, and of course, words like “it,” “of,” and “the.”

Who can envision those as images? She also confirmed in her book, Thinking in Pictures, Expanded Edition: My Life with Autism, how imagining social and emotional words and phrases, like “getting along with others,” was a challenge.

Over time, she built a vast library of images in her head and learned to form a variety of categories of words to understand conversation and concepts.

So, picture this. You are giving directions to your child, student, or individual, or you are asking them a question or reading them a story, and they stare off, look confused, and do not respond as quickly as anticipated. Have you considered the possibility they are trying to visualize the words you have said to follow through or connect them? Well, this might stem from their inability to picture what you are saying.

Here are some activities you might do to support a visual learner and help them expand their understanding and knowledge: • Teach them how to put puzzles together. Begin with their favorite topics and categories, gradually expanding to others.

Let them see how images come together.

•

Read big picture books to them. Find books with photographs first, then progress to drawings. Read a page and ask them to tell you what they saw in the words you read to them.

•

Teach them to draw and follow maps. Try a map of their room, home, neighborhood, and city.

•

Teach them to use a camera or a smartphone to take pictures of flowers, windows, doors, animals, vehicles, houses, waterfalls, grocery stores, etc.

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COMMUNICATION STRATEGIES

•

Teach them concepts through social stories, as detailed in The New Social Story Book, Revised and Expanded 15th Anniversary Edition.

•

Teach them to color, use paints, crayons, or colored pencils to draw what they see.

•

Teach them verbs by playing games like Simon Says.

•

Play games that support matching.

•

Play word-oriented games, like Heads Up! or Name That Word!.

•

Watch videos and films on subjects of interest, so they can see the subject while listening to the words about it.

•

Watch documentaries about nature, distant locales, and specific topics. Help them merge sight with sound.

Karen Kaplan, MS, 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 schools for 20 years before opening her own residential and education program for students with autism. She worked in credential programs at Sacramento State University as well as UC Davis and spent 20 years directing private schools for those with autism and similar learning challenges.

Karen founded a non-profit, Offerings, which helps cultures globally to 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 annual Autism Awesomeness event. She is currently consulting and helping families, schools, and centers for children, teens, and adults. Karen has authored three books: Reach Me Teach Me: A Public School Program for the Autistic Child; A Handbook for Teachers and Administrators, On the Yellow Brick Road: My Search for Home and Hope for the Child with Autism, and Typewriting to Heaven…and Back: Conversations with My Dad on Death, Afterlife and Living (which is not about autism but about having important conversations with those we love).

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ARTICLE HEADER

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SKILLS FOR LIFE

The Importance of Post-Pandemic Social Skills Instruction

By Carli Haskovec, MA, Ed.S. LET’S FACE IT…THERE ARE MANY THINGS WE CAN BLAME ON THE RECENT COVID-19 PANDEMIC. ACADEMICALLY, OUR CHILDREN MISSED OUT CONSIDERABLY ON PERSONAL INSTRUCTIONAL TIME, AND BECAUSE OF THIS, MANY CHILDREN ARE BEHIND IN READING AND MATH. AS ADULTS, SOME OF US EXPERIENCED LOSING A JOB, LOSING A LOVED ONE, OR JUST THE UPHEAVAL OF LIFE AS WE KNEW IT. THE PANDEMIC AFFECTED EVERYONE, AND THIS IS WHY THE TERM “BUT COVID-19” HAS BECOME PART OF OUR EVERYDAY LANGUAGE AS WE DESCRIBE AN UNWANTED LIFE CHANGE.

T

hankfully for our children, the federal and state governments have allocated additional funding to address the academic deficits many students now face. Despite this increased budget, certain areas still require remediation. Even now, two years after most schools returned to “normal,” the academic gap is still very evident.

Unfortunately, a sizable gap has remained on the back burner in many schools. For nearly a year or more, our children were forced to stay at home for their protection and the safety of their family members. They were isolated from the evil beast called COVID-19. Because of this isolation, many children missed critical years building key social skills through everyday life experiences. Not only did this hinder their ability to

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SKILLS FOR LIFE

interact with peers on an age-appropriate level, but it also hindered their ability to perform academic and social tasks commensurate with their age.

So, what is the solution? If we had a post-COVID-19 genie in a bottle, we might have all the correct answers. In reality, that is not an option, so we must investigate ways to right the ship for our precious youth. No child is born with all the skills required to succeed. Children are not born knowing arithmetic. They aren’t born knowing letters or knowing how to read. They must be taught these basic skills at some point in early childhood.

Likewise, children are not born knowing how to interact appropriately with others. These skills must be taught and are best learned through personal interactions.

Before COVID-19, children learned these skills in a natural environment. School time, playdate trips to the park, and other activities that are part of a typical childhood naturally introduced pre-school-aged children to the skills required for interacting effectively with others. Unfortunately, the pandemic prevented this age group of children from having these natural learning experiences, significantly hindering their peer interactions.

Likewise, pre-teens missed out on important life lessons they would have typically learned at school. This has contributed to a rise in teen conflicts, otherwise known as “drama.”

What do we do? We can’t just allow our current K-12 generation of students never to learn appropriate social skills. Inaction will hinder them in current peer interactions and their future relationships, employment prospects, and other areas.

We must go back and teach lessons we previously did not have to “teach,” per se. As a behavior specialist, I have had many referrals for students struggling with appropriate classroom

conduct or responses to certain day-to-day situations. They were not “bad kids” or didn’t want to follow the rules. They just didn’t know because they missed critical learning experiences that would have naturally taught them these lessons.

By incorporating social skills lessons into our students’ day, they can learn about friendships, dealing with emotions, morals, manners, and empathy—all topics they likely struggle with due to limited exposure. These lessons do not have to be taught lecture-style, especially with younger students. Introducing game-based, pro-social activities can help build these skills in younger children. Having real-world talks with older students about struggles we have faced since the pandemic can help them be more cognizant and aware of how they treat others.

According to a study by Fisher et al. (2022), “As many as 20% of students reported symptoms of anxiety and/or depression, and roughly 30% reported their grades had worsened compared to pre-pandemic, with higher proportions of decline among remote/virtual learners.” This anxiety and depression are causing our students to struggle with interacting appropriately with peers. Not only do we need to address the underlying issues, but we need to teach the social skills necessary for successful relationships and everyday interactions.

How do we improve our children’s social skills? Increase the opportunities for peer interactions. Use challenging moments amongst peers to teach appropriate responses to various situations. Introduce new experiences that students may have missed due to the pandemic. Regardless of whether social skills are introduced by the teacher, parent, or another community stakeholder, such as a Behavior Specialist, our children need to receive this instruction now more than ever. This will ensure they are on an age-appropriate level when interacting with their peers.

Reference Fisher, H. H., et al. (2022). Student and school characteristics associated with COVID-19-related learning decline among middle and high school students in K-12 schools. The Journal of School Health, 92(11), 1027-1039. https://doi.org/10.1111/josh.13243 Carli Haskovec, MA, Ed.S., began her career as a high school special education teacher. She now serves her local Board of Education as a Countywide Behavior Specialist. She works as a special education adjunct professor at several universities and teaches GED classes at her local community college. Carli is also pursuing her Doctor of Education in Special Education. She lives in Florence, Alabama, with her husband of 23 years. She has two sons, a sophomore at Mississippi State University and a junior in high school.

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Nature Notes

Altering an Environment To Promote Healing Through Sensory Input

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

I recently read an interesting article titled “A Scoping Review of the Impact on Children of the Built Environment Design Characteristics of Healing Spaces,” which was published in the Health Environments Research and Design Journal. The article did not focus on outdoor spaces, as the authors looked at pediatric healthcare facilities, such as hospitals and clinics.

The take-home findings of the article were that nine characteristics helped make these environments more conducive to healing. The authors shared that these nine characteristics are important to themselves but can positively influence each other. They include “(1) noise, (2) music, (3) lighting, (4) gardens and nature, (5) crowding, (6) color, (7) spatial needs, (8) play and distraction, and (9) art” (Gaminiesfahani et al., 2020).

If you think a healing space is not suitable for your child (or family), a definition of health and healing is worth examining, as it is not necessarily just being unwell. According to the preamble to the constitution of the World Health Organization, “health is a state of complete physical, mental and social well-being and not merely the absence of disease or infirmity” (2006).

Nature provides many opportunities for well-being, so applying these nine characteristics to nature zones is splendid! After reading the article, I thought it would be fun to look at the nine characteristics and consider which could apply to natural environments and how they can be achieved on a small scale to promote a complete state of well-being in places such as your home. Below are some strategies to consider when upping the healing value of your home’s nature space for your children and yourselves.

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STAYING FIT AND HEALTHY

Noise •

Reduce noise as much as possible.

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Plant hedges or other sound-buffering shrubs around the perimeter of your home, if doable.

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If possible, put the garden or other child-friendly zones as far away from the road or sidewalk.

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If the nature zone is indoors, find the quietest space available and play nature sounds in the background when the space is in use, so long as the sounds appeal to those using the area.

Music •

Strategically place small and portable musical instruments that can be activated with a mallet or by touch (such as banging, patting, and strumming) in the garden.

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Encourage your children to move the instruments around the garden as it suits them.

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If the nature zone is indoors, fill a wooden box (a nature feature!) with a few instruments to shake, pat, spin, or bang on.

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Create your own musical instruments. Tape off one end of

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a sturdy, empty paper towel roll. Fill the roll halfway with dried beans or tiny pebbles. Seal the other end. Shake, turn, and groove away!

Lighting •

This is only applicable inside nature zones; a full-spectrum light on a dimmer switch is ideal.

Gardens and Nature •

This is a list topper, and this characteristic is addressed front and center!

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Design your garden to meet your child’s exceptional needs. A garden table that seated gardeners can roll under, a raised bed for standing gardeners, and pots and planters hung from fences are all options to bring the garden to your loved ones.

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Choose plants that enrich the senses—aromatic herbs, colorful flowers, and leaves that wave and make gentle noises in the wind. For children sensitive to sound, sights, or aromas, carefully consider plant selections to avoid potential dysregulation.

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Have a bucket ready to collect interesting nature finds that

STAYING FIT AND HEALTHY

can be sorted, counted, and made into clever collages.

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If your nature zone is indoors, grow hardy house plants and keep a nature bin at the ready to be filled with exquisite finds from outside that can be enjoyed indoors as art projects, learning activities, and opportunities for curious exploration.

Crowding •

Having space to self-regulate is essential. A hiding place such as a small tunnel, a bean tipi, or another cozy space can be helpful.

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Having less rather than too much in a garden is better to avoid feeling crowded.

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It is easier to add more later than to have to remove items initially included.

Color •

Bright colors tend to uplift and energize.

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Cooler colors like soft greens, blues, and peach are more calming.

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Whether outdoors or indoors, consider the best color options for your child and apply this design thinking to flowerpots, toys, and plants.

Spatial Needs •

Plan the space, whether outdoors or indoors, to meet your child’s needs—more space for seating or movement, a table for activities, or a quiet zone, to name a few.

Play and Distraction •

Childhood should revolve around play, so consider what you put in the outdoor space from your child’s perspective.

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Select whimsical colors and toys that can withstand a lot of manipulation and exploration and can be played with in multiple ways yet still be fun time after time.

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Art

Contemplate sensory systems and how you can have interesting activities and materials to touch, see, listen to, and perhaps smell. Be sure to balance these sensory play experiences with your child’s tolerable sensory range.

Avoid unnecessary overstimulation or understimulation.

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Playful art features such as animal sculptures enhance the fun and curiosity factor in both outdoor and indoor spaces.

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Whenever possible, “hide” the art in your indoor or outdoor nature space so it becomes a treasure hunt for your child to find the art features.

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Decorate the art features for holidays to add to the playfulness.

All environments can influence their occupants. By controlling what goes into a personal environment, a designer can control how a person feels in that space to a degree. Incorporating soothing sensory input through appropriate lighting, controlled noise, decoration, nature, and more can help an environment become more healing by regulating how stimulated a person in that space becomes.

References Gaminiesfahani, H., Lozanovska, M., & Tucker, R. (2020). A scoping review of the impact on children of the built environment design characteristics of healing spaces. HERD: Health Environments Research & Design Journal, 13(4), 98-114. https://doi. org/10.1177/1937586720903845 World Health Organization. (2006). Constitution of the World Health Organization. Basic documents, Forty -fifth edition, Supplement. https://www.who.int/about/governance/constitution

Amy Wagenfeld, PhD, OTR/L, SCEM, EDAC, FAOTA, is Principal of Amy Wagenfeld | Design and Lecturer in the Post-Professional Occupational Therapy Doctoral Program at Boston University. She is a Fellow of the American Occupational Therapy Association and the Center for Health Systems and Design at Texas A&M University and holds evidence-based design accreditation and certification (EDAC) through the Center for Health Design, specialty certification in environmental modifications (SCEM) through the American Occupational Therapy Association, and certification in healthcare garden design through the Chicago Botanical Garden. Amy presents and publishes widely on topics relating to access to nature and is co-author of the award-winning book Therapeutic Gardens: Design for Healing Spaces, published by Timber Press. When not designing gardens, researching, or developing garden and nature programs, Amy can be found happily digging in the dirt.

Website: www.amywagenfelddesign.com Blog: http://workjournal.org/nurture-through-nature

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SKILLS FOR LIFE

How Can I Help My Child Who Is Dyslexic?

By Dr. Ronald I. Malcolm, EdD

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SKILLS FOR LIFE

CHILDREN WITH DYSLEXIA OFTEN STRUGGLE WITH READING, WRITING, AND GRAMMAR RULES ASSOCIATED WITH LANGUAGE. SPELLING CAN PROVE CHALLENGING FOR THEM, AS WELL AS WORDS WITH MULTIPLE MEANINGS. HERE ARE 10 TIPS FOR WORKING WITH YOUR DYSLEXIC CHILD.

1. Don’t assume—get a proper diagnosis

There are times when parents may notice their child printing letters backwards. Immediately, they may assume their child has dyslexia. Before making an assumption, parents should remember that many children learning how to print often begin by writing letters backward. This is not solely indicative of dyslexia. However, if a concern with printing, pronunciation, or reading persist, it is time to seek a proper diagnosis.

essary accommodations your child may need during the school day to be successful with their reading and writing.

4. Make learning fun

Assisting your child with homework or general reading and writing skills at home should not feel like a burden or punishment.

The things you may want to work on with your child may be difficult for them. They may also be tired after a full school day of learning and not wish to engage in more academic situations in their home. Make learning fun for them. Incorporate games into educational activities like Bingo and offer small prizes. Explore fun video resources related to reading and writing games.

Use words that can be incorporated into games such as Uno, Old Maid, Chutes and Ladders, Go Fish, Twister, I Spy, etc. With a little imagination, your child may not even realize what you are doing; they simply might believe it is “Family Game Night” with a twist.

5. Introduce new words

As a parent, speak to your family pediatrician.

The pediatrician can help guide you to reputable sources of information that can serve as resources. There are agencies and specialists dedicated to working with dyslexic children who can assist with testing. Some speech and language agencies also have specialized training in this area and can provide assessments to determine if your child qualifies as dyslexic. If you, your spouse, or other close relatives have dyslexia, sharing this information with your doctor is important, as it can be hereditary.

Don’t assume you will solve all your child’s reading and writing difficulties overnight. You will not cure your child’s dyslexia.

Once you have dyslexia, you are dyslexic for life. It doesn’t go away, but successful management is possible. Tag team with your child. When looking at a reading passage, let your child select three words to work on, and then you also choose three words. That way, your child will feel like they are part of the process. You may only want to add one new word a day. Keep a record of it, and at the end of the month, show your child how much progress they have made. Let them know how proud of them you are.

2. Get the school involved

6. Make a Word Wall

Sometimes, getting your child in to see a specialist can take time. Rather than just waiting for the results of an evaluation, parents should involve their child’s teacher. Ask them if they share your concerns with reading and writing at school. See what suggestions they may have for you. Let them know about your concerns and that you are waiting for an evaluation of your child to determine if they have dyslexia. This proactive approach will help the teacher understand the situation and give them some time to collect data on your child that the specialist assessing your child may find insightful.

Word Walls are a great way to show your child how much progress they are making. A Word Wall can be developed on a door or wall in your home by using a large sheet of paper or using index cards to tape or Velcro to a wall. It may amaze younger children how many new words they learn each week. When the grandparents visit, your child can proudly point out their progress or read the words. Your child can write their newly learned words on the chart or index cards, color them, draw pictures, or more., so the activity becomes meaningful to them and personal.

3. Refer your child for a special education evaluation

7. Offer incentives

Make a parent referral to the school psychologist for a Special Education evaluation. This can be done prior to receiving a formal diagnosis. You’ll need to go into the school and sign some legal paperwork allowing specialists at the school to work with and assess your child. While a school system cannot make a formal diagnosis of dyslexia, they may identify other needs your child might have. When creating an Individualized Education Program (IEP) for a child with dyslexia, schools often refer to them as having a specific learning disability. The information collected from the school and the outside specialists will shape your child’s educational requirements and determine the nec-

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Children love incentives. Given that these activities you plan to do with your child might be difficult and frustrating for them at first, finding suitable incentives is crucial. Some parents use gold stars, scented stickers, snacks, or customized coupons that offer ten extra minutes of free time on a video game or to play outside. You know your child best and will be able to determine the type of incentive that will attract them.

8. Create study aids

Various study aids can assist your child with dyslexia. Many benefit from study aids, such as mnemonic devices. Forming words from initals can assist them with remembering what they

SKILLS FOR LIFE

may need on a test. Many children use the mnemonic device, “H-O-M-E-S,” to remember the names of the Great Lakes (Huron, Ontario, Michigan, Erie, and Superior). Some children with dyslexia who are also musically talented may turn a phrase into a song to remember it for an assignment or test. “School House Rock” used to be one that many children sang to so they could remember historical facts such as “The Preamble” or grammar rules such as “Conjunction Junction.” Finally, some children with dyslexia who are artistically talented may like to draw pictures of difficult concepts to help them remember important concepts. Whether it is mnemonics, songs, or artwork, all these study aids can benefit your child and reduce their stress in school.

9. Engage other senses

Sitting down with your child with dyslexia and passing them a pencil and paper may not work for them. Not all children are auditory learners. Many children who are dyslexic are strong visual or kinesthetic learners. You’ll need to be creative in your approach to engaging them with learning new words. Some children with dyslexia like to draw their letters or words in the air or by using paint. Others may want to use sand, beans, pudding, pennies, or shaving cream to write their letters. Some may want to mold their letters from Play-Doh or sandpaper. Some children enjoy utilizing magnetic letters and placing them on the refrigerator door or like to use colored chalk on the driveway to write their new words. Whatever it takes to engage your child, be willing to follow through. Sometimes, the messiest activities end up being the most useful and enjoyable.

10. Don’t define your child by their diagnosis

Above all, remember your kid is a child first and foremost. Don’t define them by their dyslexia. Don’t allow it to place “limits” on their academic achievement. Cherish your child who they are and love them unconditionally. Your child will sense this from you, be more willing to interact with you and work towards finding new ways to deal with their dyslexia effectively.

Many children who are dyslexic are strong visual or kinesthetic learners. You’ll need to be creative in your approach to engaging them with learning new words.

Dr. Ronald I. Malcolm, EdD, works with students with disabilities in the Northwest Arctic. He recently retired as an Assistant Director of Special Education within a public school district. He is also an Associate Faculty Member with the University of Phoenix and a Special Graduate Faculty member at the University of Kansas. He has bachelorlevel degrees in English and Special Education. He holds master-level degrees in Counseling, Special Education, and School Administration. His doctorate degree in Educational Leadership is from Northern Arizona University. His postgraduate degrees are in Positive Behavior Supports and Autism Spectrum Disorders. He has worked for the past 38 years with students between the ages of three and 21 with disabilities and various medical needs in both school and community-based settings.

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