THE IMPACT OF SELF-EFFICACY ON STUDENTS ARE YOU STAYING ON TOP OF THE IEP?
SHAPING YOUR PATH
MEET AUTISTIC ACTRESSES BELLA ZOE MARTINEZ AND SUE ANN PIEN
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?
ARTICLES
16 BACK TO SCHOOL READINESS: PARENT EDITION • SUPPORTING PARENTS OF EXCEPTIONAL CHILDREN AS THEY RETURN TO SCHOOL
Rose Adams, OTD, OTR/L
When we think of back-to-school readiness, we might think of preparing children for school. While this is important, parents also need readiness support.
20 NAVIGATING THE UNSEEN CHALLENGES OF "HIGHFUNCTIONING" AUTISM
Lia McCabe
An autistic self-advocate and mother of autistic children discusses moving beyond labels and embracing the full complexity of what it means to be autistic.
OUR COVER STORIES
FROM NONVERBAL TO PRESENTING ON THE EMMYS STAGE:
MY JOURNEY WITH AUTISM
Dani Bowman, BFA, MB
Dani Bowman, star of Love on the Spectrum and founder of DaniMation Entertainment, shares her journey with autism.
THE IMPACT OF SELF-EFFICACY ON STUDENTS WITH DISABILITIES: A GUIDE FOR PARENT
Dr. Tami Turner, PhD
A look at how belief in abilities can affect the academic performance and experience of students with exceptional needs and ways to show support.
22 LET’S ADDRESS AUTISTIC BURNOUT
Dr. Natalie Engelbrecht, ND
Having personally navigated autistic burnout, a clinician brings this critical topic to our community's attention.
40 ONCE MORE, LIKE RAIN MAN: AN INTERVIEW WITH ACTRESS BELLA ZOE MARTINEZ & FILM DIRECTOR SUE ANN PIEN
Ron Sandison, M Div
Meet an artistic duo on a mission to change perspectives on autism through filmmaking.
44 ARE YOU STAYING ON TOP OF THE IEP?
Karen Kaplan, MS
A special education expert offers tips for ensuring your child’s Individual Education Plan remains current and appropriate.
27 EXCEPTIONAL BOOKS I HAVE A QUESTION BOOK SERIES
Meredith Polsky, LCSW-C, MS and Alren Gaines, LCSW-C, APHSW-C
This straightforward and inclusive collection of books supports children and their caregivers as they grapple with challenging topics, including death, divorce, and cancer.
28 BRAVO TO OUR EXCEPTIONAL CONTRIBUTORS AND BOOK
AUTHORS OF 2024
Amy KD Tobik, BA
We unveil the recipients of this year’s Exceptional Needs Today Contributor & Book Author awards
37 SUGGESTIVE RATHER THAN CORRECTIVE EQUALS POSITIVE WHEN THERE ARE DISABILITIES
Dr. Toby T. Baker
Students with disabilities often misinterpret their teacher’s words and consequently feel judged when receiving feedback. Here are some tips for providing constructive support.
39 EXCEPTIONAL BOOKS SELF-LOVE, HEALING & NEURODIVERGENCE; POEMS OF THE NEURODIVERGENT EXPERIENCE
Jaclyn Pensier
A woman who received a late autism diagnosis shares her writing that reflects her journey to find solace and acquire the tools to help articulate her complex emotions.
48 ALL THINGS OT A NEW WAY TO LOOK AT SENSORY DYSREGULATION
Laura A. Ryan, OT, OTR, OTD
A consideration of sensory dysregulation through a new frame of thought that views it as a mismatch in energy between the individual and their environment.
50 EXCEPTIONAL ADVICE FROM MESHELL THOUGHTFUL WAYS TO CO-PARENT A CHILD WITH DIFFERENT NEEDS DURING SEPARATION/DIVORCE
Meshell Baylor, MHS
Here are some ideas for making the process smoother for children with exceptional needs when parents separate.
52 HOW MY WRITING HAS HELPED MY ASPERGER'S AND ADVOCACY
Julie Day
An author shares how Asperger’s and her vivid imagination have aided her work as a fiction writer.
56 KATE MAKES IT GREAT WAYS TO HELP A CHILD STRUGGLING TO NAVIGATE SOCIAL COMMUNICATION
Kate C. Wilde
Our resident columnist answers readers’ questions, helping parents understand their exceptional children’s needs and communication styles.
58 SAFETY GOALS WITH NICOLE DEVELOPING A PLAN FOR OUR DISABLED CHILD'S FUTURE AFTER WE ARE GONE
Nicole Moehring
Tips for what elements to remember when forming a plan for your exceptional child’s future care when you are no longer around to support them.
60 MY CHILD INHERITED MY DISABILITY
Dr. Ronald I. Malcolm, EdD
A special educator offers words of encouragement and support for parents who have recently learned their child has inherited their disability.
Read a moving poem from an Exceptional Needs Today reader about the children in the world who are seen to be different.
66 OBSESSIVE-COMPULSIVE DISORDER: TIPS FOR STOPPING THE CYCLE
Jan Stewart
A parent offers insight into the challenges of OCD and how to help children or young adults with the diagnosis.
70 NATURE NOTES LOOSE PARTS PLAY: THE NATURE VERSION
Amy Wagenfeld, PhD, OTR/L, SCEM, EDAC, FAOTA
An overview of the beauty of loose parts play in nature and how it can nurture imagination and life skills.
72 PLANNING FOR THE FUTURE WITH SPECIAL NEEDS: IT’S DOUBLE DIFFICULT
Keri Horon
A mother of a 24-year-old young man with special needs offers an honest glimpse into her challenges while forming a future care plan for her child with exceptional needs.
78 FINANCIAL FOCUS
HOW CAN I HELP MY SPECIAL NEEDS CHILD LEAVE SCHOOL AND TRANSITION TO THE ADULT WORLD?
Ryan F. Platt, MBA, ChFC, ChSNC, CFBS
As school ends, so does the structure for so many teenagers with special needs, so learning how to support them through the transition is key.
Exceptional Needs
Our mission is to educate, support, and energize families, caregivers, educators, and professionals while preparing all families for a healthy future.
exceptionalneedstoday.com
Founder/Publisher
Amy KD Tobik, BA
Lone Heron Publishing, LLC
Magazine Staff
Editor-in-Chief: Amy KD Tobik, BA
Editorial Assistant: Margo Marie McManus, BS
Editorial Intern: Haiku Haughton
Copy Editor: Emily Ansell Elfer, BA
Digital Marketing Coordinator & Social Media: Dione Sabella, MS
Graphic Designer: Annie Rutherford, BA
Professional Consultants
Jeanetta Bryant
Dr. Stephanie C. Holmes, BCCC J. Edwards Holt
Dr. Ronald I. Malcolm, EdD Ryan F. Platt, MBA, ChFC, ChSNC, CFBS Ron Sandison, M Div Amy Wagenfeld, PhD, OTR/L, SCEM, EDAC, FAOTA
ur journeys are vastly different; each one of us is beautifully unique. This is why fostering a fulfilling and loving life for all people is crucial. An estimated 1.3 billion people worldwide experience a significant disability. That’s one in six people. It’s up to all of us, whether we are caregivers, family members, educators, or self-advocates, to find ways to help one another identify strengths while navigating a progressive and positive pathway toward the future.
The star of the television series Love on the Spectrum and founder of DaniMation Entertainment, Dani Bowman, BFA, MBA, says when she was diagnosed with autism as a toddler, doctors painted a grim narrative, suggesting she would never talk, finish school, or make friends. However, Dani turned her dreams into reality with her family's unwavering support. She excelled academically with the help of an aide and founded DaniMation Entertainment as a teen. Don’t miss Dani’s insightful article, From Nonverbal to Presenting on the Emmys Stage: My Journey with Autism. With support, Dani says she grew into who she was meant to be. “I didn’t grow out of my autism—I grew into it,” she says.
Actress Bella Zoe Martinez says she didn’t feel empowered to be an actress growing up. From an early age, she says her mother was clear that she was “different” and prepared her to behave in what she calls a “normal way” so she would fit in. In response, Bella mimicked and acted her way through daily scenarios. Eventually, her path changed when she met actress and Film Director Sue Ann Pien, who was also autistic. Acting provided Bella with coping mechanisms to overcome being a victim of severe bullying and offered her a way to socialize and communicate. Read Ron Sandison, M Div’s exclusive piece, Once More, Like Rain Man: An Interview with Actress Bella Zoe Martinez & Film Director Sue Ann Pien, as this artistic duo shares their mission to change perspectives on autism through filmmaking.
Whether you care for someone with a disability or you have been diagnosed, it’s not unusual to experience some apprehension when you think about what tomorrow may bring. It’s hard enough sometimes with the pressures of work and family to get through the week, let alone consider
a few years down the road. Navigating a structured path, however, is vital to a secure and meaningful life.
As school ends, so does the structure for many people with special needs, so learning how to support them through the transition is key. The founder of A Special Needs Plan, Ryan F. Platt, MBA, ChFC, ChSNC, CFBS, says it can seem like an abyss in which families are at a loss for direction and guidance. If you are a parent/caregiver, read How Can I Help My Special Needs Child Leave School and Transition to the Adult World? Ryan explains the importance of finding organizations to support a loved one in finding their path, whether it’s a job, volunteering, or other daytime activities.
Nicole Moehring, founder of Voices of Change 2018, offers tips in her article, Developing a Plan for Our Disabled Child's Future After We Are Gone, on what elements to remember when forming a plan for your child’s future care when you are no longer around to support them. We also offer the wise voice of Keri Horon, the mother of a 24-year-old man with special needs. Be sure to read Planning for the Future with Special Needs: It’s Double Difficult, as she offers an honest glimpse into her challenges while forming a future care plan for her child with exceptional needs.
It's always an honor to work closely with so many committed advocates every day. Exceptional Needs Today was honored to receive the Gold Award from Mom's Choice Awards years ago, and we select top writers and books each year for recognition. Be sure to check out our impressive winners in this issue.
Let's continue to support and guide one another with kindness.
Ready to explore neuroscience-aligned and neurodiversityaffirming approaches to better support all students, teachers, and staff? If so, join us for “Supporting All Brains,” a groundbreaking conference where all brains are supported and valued!
Asa parent of a child with disabilities, you are probably well aware of the challenges your child faces in school. However, what might be less apparent is how deeply their belief in their abilities—known as self-efficacy—affects their academic performance and overall experience. Low levels of self-efficacy often contribute to lower academic achievement, decreased persistence, and a feeling of helplessness. For students with disabilities, these feelings can become barriers to success, leading them to believe their efforts won’t pay off, which in turn affects how they engage in their education.
Understanding self-efficacy and its importance
As previously mentioned, self-efficacy refers to a student’s belief in their ability to succeed in specific tasks (Stajkovic et al., 2018). For students with disabilities, this belief can be especially fragile, given the additional academic, social, and emotional challenges they often face in school. Research consistently shows that students with a strong sense of self-efficacy are likelier to persist in school, engage in academic tasks, and believe their efforts will lead to success. However, the opposite is also true: students who experience a diminished sense of selfefficacy are more likely to withdraw from academic tasks and disengage from school (Bosma et al., 2014).
As a parent, it’s essential to understand the relationship between self-efficacy and academic performance. For students with high-incidence disabilities such as learning disabilities, struggles in school can lead to a cycle of low self-esteem and decreased motivation. When students encounter repeated failure or feel unable to meet expectations, their belief in their ability to succeed diminishes. This lack of confidence often results in less engagement with schoolwork and lower academic outcomes, further reinforcing their sense of helplessness (Hen & Goroshit, 2014).
How the school environment influences self-efficacy
How schools structure their classrooms and programs significantly shapes a student’s sense of self-efficacy. Academic achievement is deeply intertwined with the instructional practices, classroom environment, and school policies students experience daily. For students with disabilities, the level of support they receive—through formal services like Individualized Education Programs (IEPs) and the school's culture and model—can greatly influence their confidence and belief in their abilities.
The Individuals with Disabilities Education Act (IDEA) mandates that schools provide accommodations,
modifications, and support for students with disabilities. While these legal protections ensure that schools make efforts to meet the needs of students with disabilities, the quality and consistency of these efforts can vary widely. When students receive adequate support that aligns with their needs, they are more likely to experience academic success, boosting their self-efficacy. Conversely, when students face obstacles to receiving the support they need, they may internalize feelings of frustration and failure, further damaging their belief in their abilities (Wiener & Daniels, 2016).
For example, many students with attention-deficit/ hyperactivity (ADHD) who are of average or above-average intelligence struggle, not because they cannot grasp the material but because they have difficulty mastering tasks without appropriate accommodations. When their efforts do not yield success, they may feel defeated, leading to a decrease in self-efficacy and motivation. As these feelings take root, students may disengage from academic tasks, further contributing to a cycle of low performance and low self-esteem (Wiener & Daniels, 2016).
Recognize and celebrate your child’s accomplishments, no matter how small they may seem. Even small victories can boost your child’s confidence and reinforce the idea that hard work pays off.
Building self-efficacy through academic success
The good news is that self-efficacy is not a fixed trait. It can change and improve over time, especially when students experience academic success. Studies show that higher levels of self-efficacy are linked to better educational outcomes and increased persistence in school (Stajkovic et al., 2018). This creates a positive feedback loop: as students begin to believe they can succeed, they engage more with their schoolwork, and as they experience success, their confidence grows even stronger.
Research by McKittrick et al. (2019) supports this connection between academic achievement and increased self-efficacy in students with disabilities. Their study of special education in rural charter schools found that students who achieved academic success were
EXCEPTIONAL EDUCATION
more engaged and persistent in school, suggesting that academic achievement directly influences self-efficacy. This means that helping your child experience even small successes in school can significantly boost their confidence and willingness to try harder in the future.
Similarly, a study by Bernacki et al. (2015) found that students’ self-efficacy is closely linked to their experiences with specific academic tasks. When students successfully complete a challenging assignment or master a new skill, their belief in their ability to tackle similar tasks increases. This enhanced sense of self-efficacy not only improves their motivation but also their overall performance in school.
As a parent, this underscores the importance of working closely with your child’s teachers to ensure they receive the proper support and accommodations. When your child experiences success, whether through personalized instruction, tutoring, or other interventions, it can impact their confidence and persistence in school.
How you can help your child develop a strong sense of self-efficacy
You can use several strategies to support your child in developing a strong sense of self-efficacy. Here are a few key approaches:
1. Celebrate successes: Recognize and celebrate your child’s accomplishments, no matter how small they may seem. Even small victories can boost your child’s confidence and reinforce the idea that hard work pays off. Acknowledging their effort is crucial, whether it’s finishing a homework assignment, mastering a skill, or getting a good grade.
2. Encourage effort over outcome: Help your child focus on the process of learning rather than just the result. Praising effort and persistence encourages a growth mindset—the belief that abilities can be developed through hard work and dedication. This mindset can help your child see challenges as opportunities to grow rather than as insurmountable obstacles (Paunesku et al., 2015).
3. Work with the school: Collaborate with your child’s teachers and staff to implement their IEP effectively. Accommodations like extra time on tests, alternative assignments, or the use of assistive technology can help your child experience success in areas where they might otherwise struggle.
4. Provide structure and support at home: Establishing routines for completing homework and study sessions can give your child a sense of control over their learning. Having a quiet, organized study space can also help them focus and feel more capable of tackling academic tasks.
5. Model resilience: Your attitude toward challenges can significantly impact your child’s approach to difficulties. Modeling resilience, perseverance, and a positive attitude toward setbacks can help your child develop these traits.
Conclusion
Self-efficacy plays a critical role in the academic success and overall well-being of students with disabilities. A diminished sense of self-efficacy is linked to poor academic performance, decreased persistence, and disengagement from school, while experiencing a strong sense of self-efficacy fosters motivation, engagement, and achievement. As a parent, you have a unique opportunity to help your child build their belief in their abilities by providing support, celebrating their successes, and working closely with their school to ensure they receive the appropriate accommodations and interventions. By focusing on the factors that nurture your child’s burgeoning self-efficacy, you can empower them to face academic challenges with confidence and resilience, setting them on a path toward long-term success.
References
Bernacki, M., Nokes-Malach, T., & Aleven, V. (2015). Examining self-efficacy during learning: Variability and relations to behavior, performance, and learning. Metacognition & Learning, 10(1), 99–117. https://doi. org/10.1007/s11409-014-9127-x
Bosma, H., van de Mheen, D., Mackenbach, J., & Van Lenthe, F. J. (2014). Self-efficacy and persistence among students. International Journal of Educational Development, 36, 4350.
Hen, M., & Goroshit, M. (2014). Academic self-efficacy and persistence in students with learning disabilities. Learning Disabilities Research & Practice, 29(3), 8897.
McKittrick, L., Elffers, L., & Hernandez, A. (2019). Self-efficacy and academic persistence among students with disabilities. Rural Special Education Quarterly, 38(4), 3445.
Paunesku, D., Walton, G. M., Romero, C., Smith, E. N., Yeager, D. S., & Dweck, C. S. (2015). Mind-set interventions are a scalable treatment for academic underachievement. Psychological science, 26(6), 784-793.
Stajkovic, A. D., Bandura, A., Locke, E. A., Lee, D., & Sergent, K. (2018). Test of three models of self-efficacy and academic performance. Journal of Applied Psychology, 103(2), 209224.
Wiener, J., & Daniels, L. M. (2016). Students with attention-deficit/ hyperactivity disorder: Internalized feelings of defeat and distress. Journal of Attention Disorders, 20(7), 606615.
Dr. Tami Turner, PhD holds a doctorate in Special Education Leadership and works as a Special Education Administrator in the San Francisco Bay Area. She has been in education for 15 years and has taught at both the high school and college level, including a current position as a lecturer at San Jose State University.
From Nonverbal to Presenting on the Emmys Stage: My Journey with Autism
By Dani Bowman, BFA, MBA
AsI stood backstage, just moments away from presenting two Creative Arts Emmy Awards, memories of my journey rushed through my mind. From being a nonverbal, hyperactive child who was expelled from daycare at age two for my "Go-Go Baby" shenanigans to standing on the Emmys stage, it felt surreal. My journey—from not speaking until age five to this incredible Moment—has been filled with challenges and triumphs. As a person on the autism spectrum and the founder of DaniMation Entertainment, I’ve spent the past 15 years helping others with autism turn their passion for animation into careers. This is my story.
Early Beginnings: Navigating A World I Didn’t Yet Understand
I was born on January 9, 1995, in Sherman Oaks, California.
From early on, my parents noticed I wasn’t meeting the typical milestones other children were reaching. I didn’t speak until I was five, preferring actions over words. I was always on the move, earning the nickname "Go-Go Baby" because I loved exploring, climbing, and lining things up. I was so hyperactive that I got expelled from daycare at age two for my boundless energy.
When I was three, professionals told my family that “girls don’t get autism” because, in the 1990s, it was often seen as a "boys' thing." But on a second visit, these same professionals changed their stance and gave me the official diagnosis of autism. They painted a grim picture, suggesting I might never finish high school, attend college, or even make friends. The idea that I might not achieve anything
significant was their narrative.
However, no one explained to me what autism was, and I remained unaware of my diagnosis. All I heard was that I couldn't do this or that, which only motivated me to prove people wrong. Reflecting, I wish someone had simply explained to me what autism was and what it meant.
The Power of Animation: Unlocking My World
When I reached age four, my family was still in the dark when it came to understanding autism. My Aunt Sandy would call my name, "DANI!" but I wouldn’t respond—I was in my own world. She even thought I might be deaf. To prove her wrong, my Mom played my favorite animated movie at a low volume from across the house. Like magic, I heard it and came running. Animation had begun to unlock a new world for me.
By the time I was six, I didn’t know I had autism, but I could sense that I was different. School was confusing, especially socially. I struggled to make friends and couldn’t understand why other students acted as they did. During this time, art and animation were my refuge. Cartoons fascinated me, especially their exaggerated expressions. They helped me understand emotions in a way that real-life interactions couldn’t.
Middle School Struggles and The Discovery of My Diagnosis
Middle school brought more challenges. I was bullied and placed in a class with primarily nonverbal students, leaving me feeling isolated and misunderstood. I didn’t dislike my classmates; I just didn’t understand them—or autism itself. The library became my sanctuary, a quiet escape from the confusion of social interactions. Art and animation were my only outlets during these years, helping me express what I couldn’t put into words.
At age 11, when I moved in with my aunt and uncle, they sat me down and told me something that changed everything: I had autism. This revelation was both clarifying and challenging. It helped me understand why I’d always felt different, but it also meant learning to accept this part of myself while navigating a world that wasn’t always built for me.
The Birth of Danimation: Turning Passion into Purpose
My transition into high school was tough. I still struggled socially, but my passion for animation deepened. By this point, I had started making my picture books, and
eventually, I ventured into animation using software like MS Paint, Photoshop, and PowerPoint. With the unwavering support of my aunt and uncle, I decided to turn my passion into a business. In 2009, at 14, during my second semester of eighth grade, I founded DaniMation Entertainment.
Starting my own company was pivotal, but it wasn’t easy. My uncle guided me through the complexities of building a business, and his belief in me turned my dream into reality.
Meanwhile, I continued to face academic challenges. In tenth grade, I learned I wouldn’t receive a diploma because I had only taken special education classes.
Determined to change this, I switched to general education classes in 11th grade. It was a difficult transition, but I was motivated. I spent five hours a night on homework and worked hard to keep up with my peers. With the support of an aide, I graduated high school with a 4.0 GPA and honors.
One of my most significant breakthroughs came when I realized the connection between animation and writing. During an Individualized Education Program (IEP) meeting, my teachers explained that animation starts with
storytelling. That was a turning point for me. I began using tools like Cliff Notes, audiobooks, and flashcards to improve in English and other subjects.
College Years: Turning Dreams into Reality
Graduating high school was a huge achievement, but I knew my journey was just the beginning. I enrolled at Glendale Community College for two years, a more affordable option that offered the accommodations I needed while navigating the bewildering world of college.
After two years, I transferred to Woodbury University, where I earned my BFA in Animation in 2018 and, later, my MBA in Global Strategy and Leadership in 2020.
Today, I’m pursuing a PhD in Positive Developmental Psychology to support the autism community better. Every step of my journey defied the experts’ predictions. The Professionals said I wouldn’t finish high school or make friends, but I proved them wrong.
I’m now able to fully focus on DaniMation Entertainment after it took a back seat for 12 years due to my studies. My goal is not just to create art but also to empower others like me. I want to teach animation to students on the autism spectrum and help them find their voices through creativity, just as I have. DaniMation became my platform to share my passion with the world.
Love On the Spectrum: Sharing My Story with The World
In 2020, I joined the cast of Netflix’s Love on the Spectrum, an Emmy-winning television series that explores the world of
relationships for people on the autism spectrum. Being part of the show was a deeply personal experience for me. Love and relationships have always been complicated subjects for me, and Love on the Spectrum gave me a platform to explore those feelings and share my story with the world. Representing the neurodiverse community on such a widely celebrated platform was a proud moment.
A Full Circle Moment: Presenting at The Emmys
In 2024, I’ve come full circle—standing on the Emmys stage as a presenter. From being a nonverbal child, misunderstood and doubted, to being a successful entrepreneur and an
“I didn’t grow out of my autism—I grew into it. Autism has shaped my life, giving me unique strengths and perspectives that have fueled my passion for animation.
Emmy presenter, my journey has been full of challenges. But I’ve grown into who I was meant to be. I didn’t grow out of my autism—I grew into it. Autism has shaped my life, giving me unique strengths and perspectives that have fueled my passion for animation.
Looking Forward: The Next Chapter
Today, I continue to focus on DaniMation Entertainment. My goal is to create more opportunities for those on the spectrum and show them their passion for animation can lead to a fulfilling career. Animation helped me find my voice; now, I’m determined to help others find theirs.
As I look back on my journey, my autism did not hold me back. It’s helped me carve my path full of creativity, resilience, and determination. And this is just the beginning. I can’t wait to see what the future holds as I continue sharing my voice with the world.
Dani Bowman, BFA, MBA, founded her company, DaniMation Entertainment, at age 11. She has worked professionally in the animation industry since she was 14. Bowman has premiered 11 award-winning animated short films at San Diego Comic-Con each year for the past 10 years. Her shorts feature the voices of Joe Mantegna, Tom Kenny (Sponge Bob), June Foray, Debi Derryberry, Stella Ritter, and other voice actors on the autism spectrum. Knowing the special talents of people with autism, Dani employs others on the spectrum at DaniMation Entertainment as musicians, artists, and voice actors. Daniutilizeshersixpassionsofautismadvocacy,publicspeaking,animation,illustration,fineandvisualarts,andteachinganimationtoshow youngadultsonthespectrumandwithotherdisabilitiesthatanythingispossibleandinspirethemtoleveragetheiruniqueabilities.Dani’steam ofstudentswontheEasterSealsDisabilityFilmChallengeforBestDirectorin2021.Sinceage15,Danihasledsummeranimationcampsaround thecountry,initiallywithJoeyTravolta’sInclusionFilms,andthenexpandedtoteachover2,000teensandyoungadults,followedbythelaunch ofDanimationUKin2019.Daninotonlyteachesanimationbutworkswithherstudentsasarolemodelandmentor,encouragingthemtofollow theirdreams.Hercontributionstotheautismcommunityhavebeenwidelyacknowledged,fromreceivingtheTempleGrandinAwardfromFuture HorizonstobeingthefirstAmericanwithAutismtobehonoredatAnnaKennedy’s“WearItforAutism”eventinLondon.Additionally,Danienjoys speakingaboutautism,theneedforself-sufficiency,andemploymentforthosewithdisabilities.Amongotherspeakingengagements,shewas thekeynotespeakerattheOhioCenterforAutismandLowIncidence(OCALICON),theOklahomaStateAutismConference(OSACON),theAlaska Autism Roadshow, ABC of North Carolina, and the California Transition Alliance. Dani graduated from Woodbury University with a bachelor’s degree in fine arts (BFA) in Animation, followed by a master’s degree in business administration (MBA) in Management and Leadership, also fromWoodburyUniversity.DaniiscurrentlyontheNetflixcastforLoveontheSpectrumUS. �� danibowman.com
Back to School Readiness: Parent Edition
Supporting Parents of Exceptional Children as They Return to School
By Rose Adams, OTD, OTR/L
When we think of back-to-school readiness, we might think of preparing children for school. While this is true and important, parents also need readiness support.
A parent check-in
Hey, parents, it’s now several months into the school year. How are we handling and managing back-to-school readiness? Chances are, we are doing the best we can. Whether your child is starting school for the first time or starting a new school year, we are all likely to feel the shift of this transition. In my recent article, “I’m Not Ready,” published in Issue 16 of Exceptional Needs Today, I discuss ways to navigate changes in routines for children (Adams, 2024). Here, I’d like to offer support to parents. But first, let’s reset and affirm.
Time to reset and affirm
Join me in taking a deep breath to reset. Breathe in deeply and breathe out calmly. Breathe in deeply again and
breathe out calmly. Try these two more times. Now, let’s affirm. Say this with me: “I am doing the best I can today, and my best is enough.”
In this article, I will offer three tips for helping parents stay back to school ready. They are: (1) Time, (2) Nutrition, and (3)Sleep. You might think, “Okay, but who has time for that?” As a parent, I can relate. Let’s dig in a bit and see if this helps!
Time—the grace of the slowdown
One of my favorite pastime activities is journaling. Over the summer, I wrote about the grace of the slowdown. This refers to Moments and experiences created when we allow ourselves to slow down. As I embarked on major transitions related to work, I started making intentional decisions to slow down. For example, I took some time to go grocery shopping and not go to rushed shops. I also took more time to walk in nature. I tried not to focus on all the things I had on my to-do list. Instead, I simply walked and took in the beauty around me. In these slow-down
Moments, I met people (instead of zooming past them) and had meaningful conversations. My attention began to shift toward the stillness and peace that exists around us, even in a very busy world (or very busy mind). Have you had a similar experience? Have you ever noticed that when you have an opportunity to slow down, things just seem to come into perspective? Have you found you are open to new experiences? What are some things you noticed or appreciated when you slowed down?
For parents of young children, the practice of slowing down may be particularly challenging. You might ask, “When do I ever have time to slow down?” You are right; finding time is challenging, but creating the space for time is possible! One suggestion might be to think of the many routines you’ve created and are creating for your children as they return to school. As you are creating or adjusting to new routines for your child, try creating routines for yourself as well. While you’re at it, add “slow down” to your list! Provide yourself with the grace to slow down, even if that means stumbling on the routines that you’ve set. Routines don’t have to be perfect; there are simply strategies set to help you and your family stay organized and gain control over the day-to-day. You can do this. Allow yourself to experience the grace of the slowdown.
Let loose time
Another suggestion is to create some downtime in your day, even if it’s for a few minutes. Let loose time is a period of unstructured, non-obligatory activity that you creatively fit into your day. Examples might include coloring, drawing, planting, or listening to music. In your let-loose Moments, try to incorporate movement and music, and consider changing your environment. I find that when I need downtime and decide to stay at home or indoors, everything that needs to be done starts calling my name. If you work outside of the home, be mindful to take regular breaks. If you work at home (including parenting), step outside your door for a Moment. You may still have tasks calling your name but give yourself permission to decline those calls for now. Can you think of other ways to let loose? Building leisure into our lives helps create the balance we need to maintain our readiness and to support our children better as they navigate the school year (AOTA, 2020).
You can also think of ways to incorporate your children into let-loose times. As a pediatric occupational therapist and Mom of two, I have seen and experienced the need for children to let loose after school. Children typically spend hours at school. They are taking in all kinds of sensory experiences from their environment and figuring out ways to manage it all. These experiences can become overwhelming and might lead to sensory overload. An overloaded sensory
system may be on its way to spilling over. Spilling over may present as becoming emotional, shutting down, or appearing to have extra energy after school. Similarly, as parents, we spend time planning, multi-tasking, preparing, and engaging. All of this can result in a spilling-over response. We may find ourselves feeling overwhelmed or at capacity. This indicates we might need more let-loose Moments throughout our day. Let’s commit to incorporating this necessary time into our routines and, when possible, with our children. Letting loose may help to manage our capacity cups, so they don’t stay in overflow mode.
Are you fueling your tank?
The second tip for supporting school readiness for parents is nutrition. Let’s talk about it! Children with exceptional needs might have restricted food preferences. As parents, we do our best to help them maintain adequate caloric and nutritional intake. Are we doing the same for ourselves? How are we fueling the tank? I am guilty of struggling in this area. Although I consider myself someone who tries to make healthy food choices, I tend not to fuel up enough throughout the day. I sometimes need to remind myself to stop and eat, even if it means I’m doing it while feeling sleepy.
SHAPING OUR FUTURE
What are some foods that you enjoy? Would you consider them to be fuel foods or energy sources? Or would you consider them to be your getting-by sources? If I am honest, we may need both options. My encouragement is, let’s try to increase our energy-source foods so that our getting-by food sources don’t have us running on empty before the school day is out! You’ve got this. We’ve got this. Now, fuel up! The Centers for Disease
The importance of sleep
The final tip is sleep. Raise your hand (or eyebrows, depending on where you are while reading this piece) if your child has difficulty with sleep. How about your sleep? I frequently joke around and tell my husband that sleep is my favorite occupation! Occupations are the everyday, meaningful activities we engage in (AOTA, 2020). If there is ever an opportunity to sleep, I’m sleeping. If I can choose between watching a show or sleeping, guess what my choice is? You’ve got it; I choose sleep. Sleep is one of the significant areas requiring support for many parents of young children. In our home, bedtime translates to playtime. Children sometimes have difficulty settling in for bed for many reasons (Fadzil, 2021; Reynolds et al., 2019, Richdale & Schreck, 2019). They may become super playful as their bodies seek ways and additional sensory experiences to help them settle in for bed (Richdale & Schreck, 2019). Speak with your child’s occupational therapist if you are concerned about their sleep.
For parents, sleep is just as important. Sleep may not be your favorite occupation, but it’s a very necessary one that is vital to your health and well-being (Chehri et al., 2022). Consider giving yourself adequate rest time and downtime. Adequate may mean different things for different homes and families. So, we will focus on the quality of our rest and downtime as this impacts our energy sources for the day. One example might be to try resting our minds from technologies by putting smartphones on in the do not disturb mode or switching the ringer to silent mode after a certain time in the evening. Another example is to shift our environment to prepare for sleep by turning off any
unnecessary background sounds (radio, television, games, etc.), turning off lights, ensuring that the temperature in your home is not too hot or cold, and running the shower or bath for a warm relaxing “semi-alone” Moment (before the kids barge in). I know that this may all be challenging, but it is possible.
Parents, you are real-life superheroes! There are no rulebooks, and no one method applies to all, just the gift of parenting the amazing children in our care. Treat yourself gently and kindly with this gift as you support your children’s readiness for a new school year with time, nutrition, and sleep. It’s challenging but possible!
References
Adams, R. (2024, April). I’m not ready: Supporting differently-abled kids through changes in routine. Exceptional Needs Today, 16, 18-20. https:// issuu.com/exceptionalneedstoday/docs/03.24_ent_issue16_f-pages 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
Centers for Disease Control and Prevention. (2024, March 1). Nutrition: Healthy eating tips. https://www.cdc.gov/nutrition/features/healthyeating-tips.html
Chehri, A., Taheri, P., Khazaie, H., Jalali, A., Ahmadi, A., & Mohammadi, R. (2022). The relationship between parents’ sleep quality and sleep hygiene and preschool children’s sleep habits. Sleep Science, 15(3), 272–278. https://doi.org/10.5935/1984-0063.20220051
Fadzil, A. (2021). Factors affecting the quality of sleep in children. Children, 8(2), 122. https://doi.org/10.3390/children8020122
Reynolds, A. M., Soke, G. N., Sabourin, K. R., Hepburn, S., Katz, T., Wiggins, L. D., Schieve, L. A., & Levy, S. E. (2019). Sleep problems in 2- to 5-yearolds with autism spectrum disorder and other developmental delays. Pediatrics, 143(3), 1. https://doi.org/10.1542/peds.2018-0492
Richdale, A. L., & Schreck, K. A. (2019). Examining sleep hygiene factors and sleep in young children with and without autism spectrum disorder. Research in Autism Spectrum Disorders, 57, 154–162. https://doi. org/10.1016/j.rasd.2018.10.00
Resources
Occupational Therapy support for sleep and bedtime routines https://www.aota.org/-/media/corporate/files/practice/ask-for-ot/ask-forot-bedtime.pdf
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, P.C., and currently works as a consultant for 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 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.
Navigating the Unseen Challenges of “High-Functioning" Autism
By Lia McCabe
Assomeone who’s been labeled “high functioning” on the autism spectrum, I’ve learned firsthand that this term doesn’t always paint the full picture. At first glance, “high functioning” might suggest that things come easily or that our challenges are minimal. But in reality, it can often feel like we’re walking a tightrope, trying to balance what the world expects from us and what we’re actually experiencing inside.
One of the hardest parts about being labeled this way is the expectations it creates. People might see me managing day-to-day life—holding down a job, engaging in conversations, appearing “normal”—and assume that I don’t need much help. But what they don’t see is
the constant effort it takes to keep up that appearance. Behind the scenes, autistic individuals are often overwhelmed, second-guessing every social interaction, and feeling utterly drained by the end of the day. It’s like being in a play where everyone else has the script, but you’re just guessing your lines.
Social situations, for instance, can be particularly exhausting. While I might appear to engage well with others, there’s often a mental gymnastics routine happening in my head—trying to decode body language, tone of voice, and hidden meanings. The pressure to fit into neurotypical social norms can be overwhelming, and when I inevitably stumble, it’s easy to feel isolated and frustrated.
Then there’s the emotional toll. I’ve spent much of my life masking—hiding the parts of myself that don’t seem to fit in. But masking comes at a cost. It leads to burnout because autistic individuals are constantly denying who they really are just to make others more comfortable. Sometimes, it can feel like living a double life, where the real me only gets to come out when I’m alone or with close family.
Sensory sensitivities add another layer of complexity. Imagine going through your day feeling like the world is just a little too loud, too bright, or too rough. While I’ve improved at managing these sensitivities, they’re still there, lurking in the background and ready to tip the balance at any Moment. Even though I can talk about them now, it doesn’t make the sensory overload any less challenging when it happens.
There are also other associated struggles many autistics face, such as retaining information, auditory processing delays, and decoding language. These are challenges that can make daily life feel like an ongoing puzzle. I might hear something in a conversation, but it takes longer for the words to sink in or for me to process what was said. Retaining information can feel like trying to catch water with a sieve, and decoding language sometimes requires more effort than people realize. On the surface, I might look like I’ve got it all together, but behind the scenes, it’s often a scramble to keep up.
What really gets to me, though, is the stigma. The label “high functioning” can make it seem like I’ve got it easy, which couldn’t be further from the truth. People don’t often see the full spectrum of the autistic experience, and that can lead to judgments and misconceptions. It’s tough to constantly explain that just because I can do some things well doesn’t mean I’m not struggling with others.
To be honest, the whole idea of functioning levels oversimplifies things. Autism is so diverse, and no two people’s experiences are exactly the same. By focusing too much on these labels, we miss out on the chance to really understand and support each other in the ways that matter most.
So, what’s the takeaway from all of this? For me, it’s about moving beyond labels and embracing the full complexity of what it means to be autistic. It’s about recognizing that even those of us who seem to “function” well on the outside still need understanding, support, and acceptance. The more we talk about these experiences openly, the closer we get to a world that truly embraces neurodiversity.
Suppose you’re looking for more insights or support, especially if you or someone you love is navigating autism. In that case, I encourage you to check out AutismWish and tune into my podcast, “Embracing Autism.” It’s a space where we can share, learn, and grow together
Lia McCabe is an autistic self-advocate and mother of autistic children. As the founder of AutismWish, a grassroots charity dedicated to supporting autistic children and their families, Lia is deeply committed to making a difference in the autism community. She also hosts the Embracing Autism Podcast, a globally ranked show in the top 2%, where she and her husband offer insights and resources to help parents navigate the challenges of autism. Drawing from her personal experience as a “high-functioning” autistic individual, Lia brings a unique perspective to her advocacy, focusing on autism and neurodiversity
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@autismwish
Let’s Address Autistic Burnout
By Dr. Natalie Engelbrecht, ND
Having recently navigated autistic burnout (ABO) myself, I felt a strong urge to bring this critical topic to our community's attention. The question arises: How can we effectively discuss a condition that significantly impacts our lives, especially when a lack of understanding in clinical circles persists?
In 2020, Raymaker presented research demonstrating autistic burnout as a unique condition, separate from occupational burnout or clinical depression. Autistic burnout can manifest due to a variety of reasons, including:
• Prolonged stress
• Sensory overload
• Social demands
• The continuous effort to mask or suppress autistic traits
According to Higgins et al. (2021), the provisional definition of autistic burnout, that is, the symptoms an autistic needs to demonstrate to be diagnosed with autistic burnout are both of the following:
1. Exhaustion: This includes feeling extremely tired both mentally and physically and
2. Social Withdrawal: A noticeable desire to withdraw from social interactions or relationships.
In addition to the above, at least one of the following symptoms may be present:
1. Struggling in Key Areas of Life: This might involve facing challenges in social situations, work, school, or other fundamental aspects of life.
2. Cognitive Difficulties: This can include feeling confused, having trouble with planning or decisionmaking, and experiencing Moments of feeling detached from reality. For example, an autistic individual might find it hard to concentrate, make decisions, or feel disconnected from their surroundings.
3. Heightened Autistic Traits: During autistic burnout, some people may notice that their autistic characteristics become more pronounced, and they find it harder to mask or hide these traits.
In talking with other autistics regarding their lived experiences, here are some of the main concerns shared regarding burnout:
1. Emotional Exhaustion: Many autistic individuals report feelings of overwhelming fatigue, sadness, and irritability. This state of affairs can lead to sadness or irritability, making everyday life even harder.
2. Sensory Overload: Autistic individuals often experience heightened sensitivity to sensory stimuli. If there's too much happening at once, it can lead to feeling burnt out.
3. Social Fatigue: Being around others can be particularly draining because people try to "fit in" or mask autistic traits. These efforts contribute to fatigue and burnout.
4. Loss of Skills: During burnout, some autistic individuals may find it more challenging to do things they've always been good at.
5. Increased Meltdowns or Shutdowns: During burnout, people might have more meltdowns and shutdowns, leading to further isolation and feelings of helplessness.
6. Health Concerns: Many autistic individuals experience physical health issues alongside burnout, such as chronic pain, digestive problems, or sleep disturbances.
7. Stigma and Misunderstanding: Society often lacks understanding of autistic burnout, leading to stigma and inadequate support for those experiencing it. The result can be feelings of isolation or not being misunderstood by others.
8. Difficulty in Seeking Help: Autistic individuals might struggle to communicate their needs or seek help during burnout phases. This difficulty can lead to a lack of appropriate support systems and resources.
9. Impact on Daily Life: Burnout can significantly impact an individual's ability to perform everyday tasks, leading to disruptions in work, relationships, and self-care.
10. Stigma against Disability: Many autistic individuals worry that their burnout experiences reinforce negative perceptions of disability, making it harder for them to advocate for their needs.
The experience of autistic burnout
My experience with autistic burnout was quite revealing. I didn't realize I was experiencing burnout; I felt more tired than usual and frustrated by exhaustion.
The signs that indicated I was experiencing burnout were overwhelming exhaustion and a noticeable decline in my ability to do as much as I had previously. My loved ones expressed concern for me. During this time, I also stopped pursuing my passionate interest. I am only beginning to rebuild.
Situations or factors that trigger autistic burnout
Concentrated thinking is required when I work with patients, even though I don't need to mask heavily around them. Seeing too many patients in succession without adequate breaks can lead to burnout.
Another critical factor is the need for more time between social engagements. While I appreciate invitations, these requests can sometimes cause stress. My ability to engage depends heavily on my remaining social battery—if depleted, it can be overwhelming.
Symptoms
The main symptoms of autistic burnout, as outlined in the current definition, are exhaustion and social withdrawal, and I can personally attest to this. I found it increasingly challenging to spend time with others, and exhaustion became overwhelming.
It's crucial to identify these signs early. If you notice an autistic individual exhibiting these symptoms or heading in that direction, it's important to intervene. Taking these indicators seriously and considering the possibility of burnout can make a significant difference.
Coping mechanisms
Initially, my coping mechanism for autistic burnout was to try to ignore it. I believed I could power through, but that strategy proved ineffective. Eventually, I realized I needed to take a different approach and cut down on specific activities and commitments to help manage my burnout more effectively. This tactic might involve setting boundaries, prioritizing self-care, and seeking professional help.
Self-reflection
Not everything that I experienced during my autistic burnout was negative. For example, it forced me to establish boundaries, something I've been apprehensive about my entire life!
In response to what I felt was a low quality of life, I became much more protective of what was needed to enjoy life, connect with the people I care about, and engage with my interests. For the first time in my life, I recognized that boundaries are essential for my well-being.
Advice
The information shared in this article aims to equip you with the tools you may need to recognize autistic burnout in yourself or in someone you love. To empower autistics, I have also co-written a book called The Ultimate Guide to Autistic Burnout, which dives even deeper into this essential topic.
Remember always to honor your needs to the best of your ability. Autistic burnout is a reality for many of us within the autistic community. While we can't change that fact, we can empower ourselves by learning about the condition, creating boundaries, and listening to our needs.
Dr. Natalie Engelbrecht, ND, is a highly accomplished and widely respected clinician with a special interest in autism spectrum disorder (ASD). She has nearly 30 years of experience in private practice and is the founder of Embrace Autism, an internationally renowned website that provides research and experience-based information on autism. She holds a degree in Psychology from McMaster University, a Master’s with distinction in applied clinical psychology from the University of Liverpool, and a Doctor of Naturopathy degree. Her work has significantly contributed to the global understanding of autism
embrace-autism.com
I HAVE A QUESTION
BOOK SERIES
By Meredith Polsky, LCSW-C, MS and Alren Gaines, LCSW-C, APHSW-C
The I Have a Question book series supports children and their caregivers as they grapple with difficult topics, including death, divorce, and cancer. Straightforward, inclusive, and gender-neutral, this series helps reduce fear and anxiety while providing families, therapists, and teachers with a roadmap for challenging conversations.
Designed initially for children with autism spectrum disorder (ASD) and other neurodiversities, who are often under-represented in children's literature, these books have become a go-to resource for helping ALL children understand complicated life transitions.
Meredith Polsky, LCSW-C, MS Special Education, has been working at the intersection of social work and special education for 25 years. She has a proven track record of recognizing an unmet need and creating a successful solution. She founded Matan, Inc. (www.mataninc.org) in the year 2000 and has successfully taken it from the idea stage to a nationally recognized nonprofit organization that has changed the face of faith-based experiences for tens of thousands of families. Ms. Polsky is also a child and family therapist specializing in Selective Mutism and lives in Gaithersburg, MD, with her husband and three children.
Alren Gaines, LCSW-C, APHSW-C, is a hospice clinical director and licensed clinical social worker with an advanced certification in hospice and palliative social work. She is pursuing her PhD in Palliative Care through the University of Maryland. Over almost 20 years of hospice work, she has developed a specialization in supporting families with neurodiverse children around death and dying. Ms. Gaines lives in Bethesda, MD, with her husband and two children.
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OF 2024
By Amy KD Tobik, BA
Working with writers with such energy to provide a professional level of special needs advocacy has been an honor. We have shaped Exceptional Needs Today into a productive, award-winning magazine together. As many of you know, the publication received the Gold Award from the prestigious Mom's Choice Awards, honoring excellence a few years ago. Please help us share our special recognition with the following people:
Top Exceptional Needs Voice
Erica Holmes Dorr
Erica Holmes Dorr is a graduate of Lee University with a double major in Spanish and TESOL (teaching English as a second language) with a minor in linguistics. Erica is passionate about her friends and family and about building a community. She is focused on giving opportunities to people who are often overlooked and educating others on breaking poverty cycles through education and language resources. She has participated in translating a special edition of Exceptional Needs Today into Spanish as a translator and copy editor. She has recently married and is excited to start her life with her new husband, Nicholas Dorr.
Top Special Needs Advocate
Melanie K. Milicevic
Melanie K Milicevic is a graduate of UCLA and a former 5th-grade teacher for the Los Angeles Unified School District. She mainly worked with second language learners and collaborated with special needs families to meet the unique needs of her students. She now advocates for her own special needs children and continues to work with schools to help educate them about ways to include children of all abilities in the classroom. Melanie is a passionate writer and, alongside Exceptional Needs Today magazine, has been published in Autism Parenting Magazine and by the Special Needs Resource Foundation of San Diego. She lives in San Diego with her husband and two children.
Top Social Justice Writer
Madeline Richer
Maddie Richer is a 9th-grade special education teacher in New York City. In her 10 years as an educator, she has worked in public, charter, and private schools as a co-teacher, SETSS provider, learning specialist, and selfcontained teacher. She works with neurodivergent young people in the Horizon program as a social studies and ELA teacher. Maddie is passionate about integrating social-emotional learning, restorative practices, and social justice issues in the classroom.
Top Neurodivergent Advocate
Sydney Roberts, MA
Sydney (Holmes) Roberts is a neurodivergent woman living her best life. She shares her life and tips in articles, blogs, and Dr. Stephanie C. Holmes' YouTube channel (Aspie to Aspie). She is a contributing author with her family in the newly released book Embracing the Autism Spectrum: Finding Hope & Joy Navigating the NeuroDiverse Family Journey. Sydney followed her passion for history and museums and pursued her MA in Public History with Museum Studies certification. She is the Membership Manager at the Durham Museum of Omaha; Sydney, her husband, and her two fur babies, Piper and Peanut, reside in Omaha.
Top Autism Support Writer
Siris Raquel Rivas-Verdejo, MA CCC-SLP/LD
Siris Raquel Rivas-Verdejo owns Empowering Light Language LLC. She is a Life Coach, SpeechLanguage Pathologist, LearningBehavioral Specialist, Feeding Therapist, and Therapeutic Energy Worker. She helps busy people and families communicate more effectively in all areas of their lives, leveraging their differences, gifts, and capacities to create phenomenal lives beyond what has been projected and expected.
Top Disability Advocate
Cindy Schaefer, MDiv, MA
Cindy Schaefer resides in Indiana with her husband and two children. A multifaceted professional, she serves as a real estate investor and disability advocate, contributing her expertise to Becoming rentABLE, where she fosters valuable partnerships. She has a diverse career spanning technology sales, collegelevel public speaking instruction, and various roles within nonprofit and governmental sectors. Cindy also volunteers with her local Muscular Dystrophy Family Foundation and therapeutic riding stables. Beyond her professional and philanthropic pursuits, Cindy finds joy in activities like yoga, horseback riding, and weightlifting.
Top Caregiver Advocate
Michael A. Boylan
Michael Boylan is a successful entrepreneur of 25 years, a national bestselling author of five books, a nationally recognized keynote speaker, and a developer of corporate training programs that have benefited 100,000 professionals and 20 Fortune 500s such as IBM, Microsoft, ADP, Robert Half, Cap Gemini, CBS, and others. He is the single father of an adult special needs son on the autism spectrum. The Reach for Me Network (RFM) is his fourth entity. He has appeared on CNN, Bloomberg Financial, Fox and Friends, ABC, NBC, CBS, and other network interviews about his books and programs.
Top Rights Advocate
Carol Weinman, Esq, CAS
Carol Weinman is an attorney, autism expert, world-renowned speaker, consultant, trainer, author, and parent. Her focus as a lawyer has been on criminal law, special education law, and family law. Attorney Weinman is a former Philadelphia Prosecutor and Criminal Defense Attorney internationally recognized for her one-of-akind dual expertise in criminal law and autism. Attorney Weinman testifies at criminal trials and custody hearings and consults worldwide on autism with lawyers, psychologists, counselors, educators, and families. She conducts webinars and training virtually and in person. Attorney Weinman has published articles on Autism and Crime and The Autistic Defendant. She is developing a school curriculum and serves on the Advisory Board of the U.S. Autism Association.
Top
Neurodiverse Support
Sarah Casburn, RHN, RNCP, CNE
Sarah Casburn founded Crown Family Wellness, a virtual private practice serving Canada and the USA, focusing on neuroscience and nutrition programs for neurodiversity of all ages. She has over 30 years of experience working in Early Childhood Education, Autism & Behavioral Science, Sensory Enrichment Therapy, and, most recently, as a Registered Holistic Nutritionist.
Top Communication Strategists
Lisa Jan Sherman, BA, and Laura Wahl McAlpine, MEd CCC-SL
Lisa Jan Sherman is an improvisational acting teacher and a team-building and cognitive skills coach. She is an AFTRA/ SAG Union member, performing on stage, television, film, and radio. Lisa received a BA in Theater and Speech from the University of Maryland. She was a co-founding performer with NOW THIS! musical improv troupe, which had a successful 27-year run. For over 25 years, she has co-facilitated communication skills groups for kids/young adults. She is a teaching artist with the National Theatre Foundation and facilitates UnClogging Your Brain at The Writers Center in Bethesda, MD. With Laura McAlpine, Lisa co-created the Act As If program and book.
Laura McAlpine is a speech and language pathologist with over 38 years of experience working with students to provide contextualized speech/ language intervention programs. Her experience includes 11 years in the public school system, extensive work in language learning disability classes, high school curriculum development for speech/language-impaired learners, and as a diagnostician for augmentative/alternative communication. She has been a private practitioner for the past 27 years, working with the college-age population in areas of speech articulation, pragmatic language, reading, and written expression. Most notably, Laura has co-facilitated and developed Act As If, a cutting-edge social cognition and skill development program incorporating social thinking research and behavior modification concepts. Laura is certified through the American SpeechLanguage and Hearing Association, holds her Certificate of Clinical Competence, and has additional training in implementing strategies for students with attention-deficit/ hyperactivity disorder (ADHD), autism spectrum disorder (ASD), and executive functioning challenges.
Top Board-Certified Behavior Analyst
Brianna Hillison, BCBA
Brianna Hillison is a proud alumna of the University of Nevada, Reno, and serves as a Board-Certified Behavior Analyst (BCBA) at Circle Care Services. Brianna has five years of experience in the ABA field.
Top Special Needs Nutrition Expert
Brittyn Coleman, MS, RDN/LD
Brittyn Coleman is a renowned Dietitian and Autism Nutrition Expert known for her unique sensory-friendly feeding methods tailored for children with autism. As the founder of the Nourishing Autism Collective and an autistic sibling, Brittyn combines professional knowledge with personal insight. She offers expert advice to ensure children get vital nutrients for their health and development, catering to their individual dietary and sensory needs. Brittyn's impact is amplified through her active social media engagement and Nourishing Autism podcast. She's a leading figure in autism nutrition, sharing educational content and practical tips and fostering a supportive community for parents and professionals via Instagram, YouTube, and more.
Top Family Advocate
Mary Ann Hughes, MBA
Mary Ann Hughes, founder of Special Family Transitions LLC, is committed to helping families through the overwhelm and complexities of divorce involving children with disabilities. Mary Ann is a Certified Divorce Coach, CDC Certified Special Needs Divorce Coach, Certified Divorce Specialist, Mosten-Guthrie Disability-Informed Professional, Mediator, and Co-Director of the Special Needs Chapter of the National Association of Divorce Professionals. In addition to coaching and mediation support, Mary Ann shares her knowledge via articles, podcasts, trainings, and social media, as well as an online course: Success in Divorce for Moms of Children with Special Needs.
Top Civil Rights Attorney
Devon Rios
Devon Rios is a civil rights attorney licensed to practice in California. She has been a staunch child advocate for over a decade and represents students with disabilities in the K-12 public education system. She also supports parents in the IEP advocacy process via the Unspoken Rules IEP online self-help education program.
Top Caregiver Support
Dr. Zachary Ginder, PsyD, MSW
Dr. Zachary Ginder has a lifelong passion for serving others, including education, advocacy, and direct practice. He has had the honor of supporting and working with differently abled populations throughout his career, as well as working within the education sector, early learning, youth, families experiencing homelessness, and families living with HIV/AIDS. Dr. Ginder is the Executive Director of the Inland Empire Autism Assessment Center of Excellence, a transdisciplinary group practice that provides the gold standard of comprehensive diagnostic evaluations for children and young adult populations.
Top Neurodivergent Advocate
Brittany
Browne, BA, MS
Brandy Browne is an early childhood educator in the United States and a family coach and blogger for UnStuck. Her family coaching service is aimed at helping families develop positive habits and breaking the cycle of generational trauma and poverty. She is in early and elementary instruction, and she also has a master’s degree in parenting and child/adolescent development. Brandy is the wife of her high school sweetheart of 15 years, and together they share three children, aged ten, seven, and five. She enjoys reading, gardening, writing, and distance running in her free time.
Top Parental Activist
Susan Russell
Susan Russell is a mother to her autistic daughter, Maggie Russell, who has multiple disabilities and dyscalculia. Maggie is Susan’s enormous joy, and she believes nothing she has accomplished in life before her birth can compare. A recipient of two associate degrees, Susan pursued a career in the medical profession as a transcriptionist, dental assistant, receptionist, and outpatient/registrar in hospitals and doctors’ offices. Her life has been spent advocating for Maggie’s right not to be bullied, criticized, alienated, or become the victim of discrimination.
EXCEPTIONAL ADVOCACY
Top Special Education Advocate
Jake Edgar, MS
Jake Edgar is the Director of Education at Springbrook Autism Behavioral Health in Travelers Rest, South Carolina. Jake began his career at Seneca High School as a Special Education Teacher, directing the Transition to Independence Program. This program works with students with severe intellectual delays to develop adaptive, functional, and employment skills to help them lead independent and successful lives. Jake is currently the Director of Education for Springbrook Behavioral Health. Jake oversees all educational services Springbrook provides and leads the educational team to provide the individualized education and curriculum the students need to succeed. In 2021, Jake founded the Carolina Special Education Advocacy Group. This group works to provide advocacy to families to guide them through different processes, such as Individualized Education Plans and other areas where support is needed.
Top Autism Advocate
Amir Arami, BSc, MEd
Amir Arami is a visionary entrepreneur and the innovative mind behind Verbal AUTISM and Verbal Academic Support, apps designed to revolutionize how individuals with communication challenges learn and interact. Amir’s journey began following a traumatic brain injury that set him on a path of discovery and innovation in the field of assistive technology. His academic pursuits, earned amidst personal health challenges, laid a strong foundation for his work in developing tools that are not just functional but truly transformative. At the heart of Amir’s mission is a commitment to inclusivity and accessibility. He advocates for the autism community, actively participating in dialogues and initiatives that promote awareness, acceptance, and support for individuals with diverse learning needs. Through his work, Amir continues to inspire those around him, proving that it is possible to make a significant, positive impact on the world with compassion, innovation, and perseverance.
Top Employment Specialist
Seva Reilly
Seva Reilly is a Program Coordinator and Employment Specialist with ASD Adult Achievement Center, 501(c)3. She provides administrative support in enrolling students in the center's programs for adults with high-functioning autism spectrum disorder (ASD). As an Employment Specialist, she provides career readiness training and coaching for students actively seeking employment. A recent UCF graduate with a bachelor’s degree in communication sciences and Disorders, Seva brings a variety of experiences working with individuals with disabilities, as well as four years of experience as a volunteer coordinator with the UCF student organization Aphasia Family UCF, to her role at the ASD Adult Achievement Center
Top Special Advocate
Hina Kalhoro
Hina Kalhoro is a life coach based in Southern California who specializes in working with families, caregivers, and mothers of special needs children. Hina teaches her clients how to incorporate self-care practices into their daily routines and the positive impact they can have on reducing burnout. It's easy to get caught up in the responsibilities of taking care of others, often at the expense of taking care of oneself. Hina's experience raising her son with a rare illness inspired her to become a life coach, and she is now committed to helping others navigate these challenges confidently.
Top Parent Advocate
Dr. Kimberly Idoko, MD, MBA Esq.
Kimberly Idoko is Yale College, Penn Medicine, Columbia Business, and Stanford Law trained. She operates www.SpecialParentCoach.com, a parent-advocacy empowerment community for parents of disabled children. In addition, she is a teleneurologist with more than 15 years of clinical experience and a children’s rights attorney who directs healthcare advocacy at a legal non-profit. She resides in Los Angeles with her family.
Top Exceptional Parent
Regina Williams
Regina Williams is a speech/language pathologist passionate about improving exceptional children's communication skills. She often uses her lifelong love of creating stories in her therapy sessions to expand the overall language skills of her clients. Regina has authored three published works, her first in Highlights magazine at age 10. As a young adult, she wrote a story inspired by her older daughter Kayla’s Story, which appeared in Cherubic Classics New Classic Storybook -Volume 1. Her latest publication, What If (Illumination Arts Publishing), was inspired by a word game played with her older daughter, Kayla. Regina’s two daughters have been her biggest motivation in her writing. Watching her younger daughter, Grace, bravely navigate life's challenges on the spectrum inspired her most current narrative, She Dreams of Flying.
Top Neurodiversity Coach
Jenilee Goodwin
Jenilee Goodwin, a certified professional life and neurodiversity coach, is a mom to three young adult women on the spectrum. She has a special place in her heart for moms of kids on the spectrum and for women who are going through the difficulties of spectrum marriage. In coaching with Jenilee, you can share every single page of your story. With over 20 years of neurodiverse parenting and marriage experience, Jenilee brings education, problem-solving skills, compassionate support, and creativity into each coaching session. She'll ask the hard questions while listening, guiding, and coaching clients in their unique life situations. For fun, Jenilee loves reading, writing, coffee, going for walks, and watching history documentaries.
Top Mental Health Advocate
Kristin Sunanta Walker
Kristin Sunanta Walker founded Mental Health News Radio Network and the Autism Podcast Network. The platform has over 75 podcasters and radio shows focusing on mental health, from depression, anxiety, eating disorders, attention-deficit/hyperactivity disorder (ADHD), autism, and more. Kristin spent most of her career in technology, working with clients from small businesses to Fortune 500 organizations. Her volunteer activity has always been focused on mental health as a peer counselor, therapy dog handler with patients in residential treatment centers, and a board member of multiple counseling organizations. She has her own show on her network (Mental Health News Radio) and is a frequent host of Converge Autism Her personal time is spent on her small animal farm in the mountains of North Carolina, making her inner child happy by spending the majority of her time taking care of her Mom, dogs, goats, and cats
Top Equity Educator
Taylour Arami, MEd
Taylour Arami is co-founder of Verbal AUTISM and Verbal Academic Support, an educational app designed to support individuals with communication challenges. Her passion for enhancing the educational experiences of those on the autism spectrum and with similar needs is evident in her dedication to the app’s development and outreach. Her expertise in curriculum design and instructional technology has been instrumental in creating an app that is user-friendly and impactful in its ability to tailor learning experiences to individual needs. Verbal AUTISM provides a practical app that makes it easier for children with autism to speak and provides the tools needed to teach effectively.
BOOKS
THE PET RESCUERS
Lyn and the Parrot Pursuit
Julie Day
In this charming book, a child on the spectrum builds confidence and goes on an adventure searching for her pet parrot.
Corky the Quirky Cow and the Cuckoo Concert
Lavelle Carlsono
Dive into the “udderly hilarious” tale about the perfect “speech therapist cow” who is loved for her quirkiness as she sings the sounds of all animals.
Meet Me Where I Am: Navigating the Intersection of Autism and OCD
Elizabeth
Ives Field
This nonfiction book aims to illustrate that building relationships and intervening therapeutically often involves individualized creativity and evidence-based practices.
self-love, healing & neurodivergence poems of the neurodivergent experience
Jaclyn Pensiero
A woman who received a late autism diagnosis shares her writing that reflects her journey to find solace and acquire the tools to help articulate her complex emotions.
15-Minute Focus: Regulation and Co-Regulation Workbook: Accessible Neuroscience and Connection Strategies for the Classroom and Beyond
Ginger Healy, MSW, LCSW
Explore regulation and co-regulation through the lenses of up-to-date research, sound strategies for implementation, vivid illustrations of each concept, and hands-on activities designed to reinforce the lessons in ways that will stay with the learners long after they leave the classroom.
Suggestive Rather Than Corrective Equals Positive When there are Disabilities
By Dr. Toby T. Baker
Every day across the United States, teachers spend hours correcting their students and providing feedback regarding their academic work. However, students and adults typically avoid feedback, even if it is necessary for their advancement and progress. Receiving feedback can be daunting, especially for students with disabilities, and consequently, they rarely make corrections. Why?
Studies show that students with disabilities who receive feedback from faculty often misinterpret their teacher’s words and consequently feel judged. Students with disabilities may feel fearful about receiving any input from professors and worry unnecessarily about their grades. Some students with disabilities fabricate the worst scenarios! They may say, “I’ll never pass this class!” Perhaps you think this is a bit dramatic, but research shows this is the norm.
Students with disabilities who receive a low grade in a class may believe their professor blames them for not understanding the course material. As an adult with a learning disability and attention deficit/hyperactivity disorder (ADHD), I know that I need things repeated and explained in various ways. When I was a student, I would discuss this ahead of time with my professors. This helped when I received feedback from them. Now, as a professor, I use several strategies to ensure all my students understand the course content. But more importantly, I utilize effective strategies to provide feedback.
We all know that faculty must provide feedback to students as an essential part of their academic improvement and progress toward graduation. How you provide feedback to students with disabilities is crucial. Students with disabilities report feeling frustrated when feedback on their assignments is vague. In fact, they may make the same mistakes since the feedback was not useful.
And college faculty need to be mindful of their presentation, particularly when providing feedback. The age-old saying goes, “It is not what you say, it is how you say it.” Faculty should review their procedures and delivery methods of feedback to ensure they reflect themselves and the university favorably.
When you are about to be corrective, pause and be suggestive instead. For example, the professor says, “This paper is great, but you know what would make your paper even better?” Students will perceive that you are not telling them what to do or criticizing them but offering them an action step toward progress! As a bonus, students may believe they are being offered a solution! Win-win!
Students succeed when they view feedback as actionable steps rather than an attack on their intellect. This method of suggestion eliminates the “nasty” criticism, confusion, and stress that students with disabilities tend to feel when receiving feedback. Ultimately, faculty want all students to succeed in their courses and graduate. This may start with suggestive feedback.
Dr. Toby Tomlinson Baker is a professor of teacher candidates at California State University-Los Angeles. She is the author of The Traveling IEP, which is Amazon’s #1 bestselling book. Her research focuses on higher education faculty training and self-advocacy for students with disabilities. Dr. Baker was honored to be on the cover of Exceptional Needs Today and recognized as Exceptional Needs Today’s Top Education Policy Writer in 2021.
SELF-LOVE, HEALING & NEURODIVERGENCE
POEMS OF THE NEURODIVERGENT EXPERIENCE AND
By Jacklyn Pensiero
aclyn Pensiero is an autistic adult who received a late diagnosis at the age of 24. Despite constantly feeling different, she struggled to understand the reasons behind it for many years. However, in the past year, her deep dive into learning about autism spectrum disorder has provided her with the tools to articulate her complex emotions. Through her poetry, she found solace during difficult times and finally managed to express the confusion that has persisted throughout her life. By sharing her collection of poems, she aims to create a sense of belonging for others, making them feel less alone and encouraging them to process their emotions. Explore a poignant collection of poems that vividly portrays the author's journey as an autistic individual, delving into the depths of emotions with authenticity and resonance. Her first poetry book, poems of the neurodivergence experience, was released in July 2023, just a few months after receiving her diagnosis. Jaclyn is very active on TikTok and has several accounts. Her @patnjac account features awareness for ARFID and her new boyfriend, the love of her life, trying new foods. Patrik is also on the spectrum.
Her second poetry book, self-love, healing & neurodivergence, was released in March 2024. It is a compelling tapestry of poetry that delves deep into the heart of what it means to find oneself after the storm of a toxic relationship. This second self-published collection by the author is not just a journey—it's a revelation, exploring the intricate dance between embracing one's neurodivergent identity and navigating the path to self-love and healing in the aftermath of heartbreak. Through the raw
power of verse, the author shares their personal odyssey of transformation, charting the course from pain and confusion to a place of strength and clarity. Each poem serves as a milestone in the author's journey, reflecting the unique challenges and insights that come with viewing the world through a neurodivergent lens. It celebrates the resilience required to rebuild one's sense of self when the maps of conventional love and relationships do not align with one's own compass.
This collection is an invitation to all who have felt the sting of loss, the isolation of being misunderstood, and the longing for a love that honors their whole being. It is a testament to the power of self-compassion and the importance of honoring our individual paths to healing. With vulnerability and grace, Jaclyn’s books offer solace, understanding, and hope to anyone on the journey toward healing and self-discovery.
BOTH BOOKS ARE AVAILABLE ON AMAZON
An Interview with Actress Bella Zoe Martinez & Film Director Sue Ann Pien
By Ron Sandison, M Div
"Rain Man was the first glimpse most people had of autism, and Sue Ann and I hope to take the next step and let people know that each person with autism is unique and the importance of not stereotyping."
Actress Bella Zoe Martinez and film director/actress
Sue Ann Pien produced the movie Once More, Like Rain Man to expose stereotyping of autism in Hollywood and to demonstrate that each person with autism is unique. The film depicts the obstacles experienced by actors and actresses with autism in auditions. Nearly 40% of the cast and crew of Once More, Like Rain Man are neurodivergent or are differently abled. I enjoyed watching this film and seeing Bella Zoe and Sue Ann’s advocacy in action for the autism community. I was excited to interview Bella Zoe and Sue Ann and share their journeys with autism and the movie industry.
Bella, what sparked your interest in acting? And how did your parents empower you to cultivate your passion into a career?
What got me into acting was coping with bullying. After being bullied badly in sixth grade, I found comfort and relief
in acting, and actually acting is a form of masking. By acting, I can make people smile, feel good, and bring them into my world, where I can share my story and journey. This creates an understanding and love.
Sue Ann, how have your parents empowered your career as an actress?
My parents didn’t empower me to be an actress. I don’t think anybody wanted me to act. From an early age, my Mom was clear with me that I was different. In the eighties, my Mom groomed me to behave in a “normal” way so I would fit in. By this upbringing, I thought the point of life was to act and mimic my way in every scenario. At age 15, I found life to be brutal and had a difficult time trying to fit in and I experienced depression, and I did not want to be here.
My dad and I are very similar, which makes sense. He is an aerospace engineer, and I find it easy to hang out with him. He loves to spin in circles and has intense interests and a gift
to hyper focus. He always expected me to just be myself and this was a relief.
Bella, you have two siblings on the spectrum. What are your (and your siblings’) favorite interests?
My siblings Kennedy and Alex are both autistic and they did the animation in the end credits of Once More, Like Rain Man. We included the animation because they are really good at it and that’s what they love to do. My passion is different forms of art; I love music, I love drawing, I love creating stories and characters. Writing is one of my favorite things to do because I enjoy sharing these stories with my friends.
Sue Ann, did you experience bullying as a child?
Yes, I literally had kids come and say mean things about me right in front of me as if I did not exist. I hated this and I felt very upset, and I would temporarily lose my ability to speak. As a child, I did not understand why I was treated so horribly, and I was the brunt of kids’ jokes. When a student asked, “Why don’t you invite Sue Ann to your birthday party?” the other students would laugh. By age 15, I tried to do everything possible to mimic other girls my age so I could fit in.
Bella, what motivated you to make Once More, Like Rain Man?
I remember going on a lot of auditions for autistic characters and wondering why the film industry portrays autistic characters like someone pretending to be autistic rather than a real person and does not give them the same treatment with character development. This does not mean they [don’t] care about people with autism, just that the movie scripts are misinformed, and some producers genuinely don’t know how to portray people with autism in their writing. I wrote a script on autism with my parents and knew that for a director I would want someone who is on the spectrum. Sue Ann has autism and is an actress and director, so I chose her. We clicked right away and were able to share in our film the message that, with determination and passion, we can accomplish amazing things with autism and do what we love to do.
Bella, what was your experience like with auditions?
My autism has helped me with auditions because I am observant, and when reading scripts, I can visualize characters and portray them with my personality and personal traits into the characters. Even if the character is nothing like me and is a mean girl or a villain, I still, with passion, can portray the character as long as I can bring some of myself into that character.
Bella, how did you choose the title for your film?
I chose the title Once More, Like Rain Man because without Rain Man as a film, much of the therapy and treatment we have today may not have been available because people may not have an awareness of autism and resources to help people with autism. Rain Man was the first glimpse most people had of autism, and Sue Ann and I hope to take the next step and let people know that each person with autism is unique and not to stereotype us. Just because you meet one person with autism doesn’t mean you know everything about autism; each of us is different. When I was young, my Mom put my brother and [me] ice skating [classes] because it supported our sensory processing needs; my brother and I loved to spin. I don’t get dizzy, so this is a great skill in ice skating.
Sue Ann, what are some misconceptions Hollywood has about autism?
I was lucky that I got to work with producer Jason Katims on the Prime Series As We See It. He is a veteran director and an Emmy-winning producer who has personal experience and he was able to craft and base the characters to what Rick, Albert, and myself brought to the show. It was incredible to see. I am a product of the 80s and I loved Rain Man, so it blew my mind to see Dustin Huffman portray an autistic savant in a powerful, moving film.
After seeing Rain Man as a child, I thought “I am not autistic”
because I am not like the character in the movie. I was completely opposite; I was high-functioning much more like a boy, hyper-verbal and very blunt in what I said, honest, and a rule follower. Like you, I love animals and love wildlife. So, I never saw myself as Rain Man and autistic. I also loved stimming by singing.
Autistic actors and actresses are the best workers and never miss an audition because that is our routine. Some people are mean and get ahead by throwing people under a bus; most people with autism are kind.
Bella, if you could develop the ideal character to portray in a film or series, what would they be like?
A character like myself, someone who is chaotic and has interests in multiple forms of art, music, and different forms of media, who loves reading, and is a storyteller. I love drawing expressions for characters. Expressions are a ton of fun in acting because the camera is sensitive to how you express yourself, and you need to be subtler with them in a film. As an actress, my job is to make the character come to life and be someone the audience can relate to.
Sue Ann, I loved binge-watching As We See It. Like the character Violet, I experienced meltdowns, my “Honey Badger Moments.” Did you experience meltdowns?
Yes, especially when I was a young child. My Mom was a single Mom didn’t have much support and this added to the stressful environment, along with bullying at school. All this led to anxiety and meltdowns. I don’t think meltdowns happen in a vacuum but increase in stressful environments.
Bella, I’ve noticed the key to our success is having people who believe in us and empower us to market and refine our gifts. Who were your mentors who helped you market and refine your talents?
My family and my friends. When I showed my friends and family my writing and art, they would encourage me. I remember in eleventh grade dealing with a ton of stress, and, like Sue Ann, I had students make fun of me right in front of me. My family and friends helped me stay afloat in this difficult time and inspired me not [to] give up, and I love them very dearly.
RonSandison,MDiv,worksfull-timeinthemedicalfieldandisaProfessorofTheologyatDestinySchoolofMinistry.He isanadvisoryboardmemberoftheAutismSocietyFaithInitiativeoftheAutismSocietyofAmerica,theArtofAutism,and theElsCenterofExcellence.RonholdsaMasterofDivinityfromOralRobertsUniversityandistheauthorofAParent’s GuidetoAutism:PracticalAdvice.BiblicalWisdomwaspublishedbySiloam,anditisaboutThought,Choice,andAction. 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.
�� spectruminclusion.com
✉ sandison456@hotmail.com
SQUARE-FACEBOOK facebook.com/SpectrumRonSandison
KATE WILDE AD
Are You Staying on Top of the IEP?
By Karen Kaplan, MS
It’s a new year, an excellent time to review a child’s Individual Education Program (IEP). Have you, as the parent or the teacher, witnessed the student make meaningful progress? Should strategies be changed?
To monitor and see progress, the teacher and the family need to stay on top of key information identified in the plan and how to make sure the processes laid out in the plan are working for everyone.
The following checklist could help you monitor your child’s IEP for the year ahead and determine any necessary changes.
1. Is everyone clear on their goals? Are they specific? Are they measurable, attainable, and relevant? How will anyone know if true progress is being made if it is not well defined?
2. Have you planned to take data on goals consistently and reliably as a teacher?
3. Do you, as a teacher, have all the resources, tools, supplies, and equipment you need to implement goals consistently?
4. As a teacher, have you had the best professional development to implement each goal? Have you trained your paraprofessionals to understand and implement each goal? Do they understand how to take consistent data? Do you have the correct method for collecting data? Do you have enough data collection opportunities scheduled?
5. Sometimes, behavioral challenges can make measuring a student’s progress challenging. It may be necessary to use additional strategies to overcome this challenge. For example, you may need to use a combination of direct observation, data collection, and other assessment methods. They all may need to be added to the IEP.
6. Everyone on the team must be encouraged to collaborate, communicate effectively, and set regular times to update each other.
For those who are concerned that their child’s IEP is not the strongest it could be, or who need help understanding what makes a successful IEP, here are some further points to consider:
• Look at the Present Levels section. If you read it and did not see your child's name on the forms, would you know it was them? The Present Levels section of the IEP is one of the most crucial sections because it is the section that drives the IEP. IEPs are supposed to be needsbased. The goals will be based on the needs listed in the Present Levels section. Are the needs clearly defined?
• The Progress Monitoring section can often get overlooked. Look at yours and what you should be receiving. Are you getting progress reports promptly? And are they enough? Is the IEP team re-convening to discuss and adjust if the reports show minimal progress? Think about your child's progress all the time, not just at IEP renewal time.
• Your student’s goals will be based on the needs listed in Present Levels. However, they must also be meaningful, appropriate, and relatively attainable with the right supports and services in place. Will these goals get the child to where they can be? Are they putting your students on the right path toward the team’s vision?
• IEPs are supposed to be collaborative, not directive. Tell me if your meeting looks like this: You go to the meeting, you do not receive much information, and there has been little or no correspondence ahead of time. Someone reads the IEP out loud. A few points are discussed, but most communication is directive rather than collaborative. You sign a few forms, and you are out the door. If this happens, beware.
• Does everyone on the team have a shared vision for the student? Does everyone know the plan? Is it college or a vocational training program the individual is headed for? Does everyone agree on the destination? How can a plan be written if there is no agreement? There must be a shared vision, with effective goals mapped out and effective resources identified. Finally, be sure the individual student is a part of the vision at whatever level they can be.
• Be alerted to disappearing IEP goals. You may find you have an IEP team that only considers September to May an important timeline and is not focused on age 18 or 21.The team needs to be focused on the result, not just the current school year.
• Parent participation in the IEP process should not begin and end with attending the IEP meeting. Parents must be fully engaged all year long and kept in the loop. They also need to monitor progress towards all goal
So, ensure everyone knows you want to be included in all parts of the IEP, not just a once-a-year meeting. Read up on what meaningful progress (or meaningful movement) is and use your voice to ensure this occurs. Strategies may need to be changed. Activities to bring about progress may need to be different. The environment may need to change. Even the time of day, day of the week, or length of time devoted to the goal could need some altering.
Does everyone know how to write a meaningful goal? Is the goal going to truly achieve the visioned outcome? Are the supports effective? How is the goal to be measured reliable?
Is everyone prepared to collaborate in the IEP meeting? Progress reports need to be reviewed. Everyone should observe the individual’s program and understand the shortand long-term plans.
Please find the time to sit with the student to review their plan and obtain feedback. Before developing an effective plan, be sure to identify the student's strengths, challenges, needs, and wants.
Parents and teachers can take notes or ask to record the IEP meeting. Sometimes, the parent or teacher does not give a copy of the IEP immediately. Some information may not be written in the documents, but it is important. Then, stay on the person responsible for ensuring you have a signed original copy for your consistent review during the school year.
Re-evaluations are clearly needed every two or three years, especially as students’ capacities change. Be sure to sign all documents giving permission to complete those assessments, and ensure you are given a signed copy before a meeting to discuss them.
Parents, once you are home and have taken a deep breath, review all documents, notes, and recordings. If there is anything you do not understand, write a letter of concern to the individual leading the meeting. Ask for clarification. Send a copy to the teacher. Date the request. If you send an email, make sure the email is received. Be sure to follow up on your need for understanding. If you realize you have signed something you disagree with or have limited knowledge of, you must send this letter, perhaps certified, and get clarity. Teachers, be sure you understand what is expected of you. Check for understanding so you do not let the student down or upset the family. Teamwork is truly important.
Just a few final RED FLAGS
• Ensure understandable baseline data on all goals. Without a baseline, how will you know if progress has been made?
• Make sure the goals are not vague. How does one measure what is not clear?
• Understand that grades on a report card are not measurable
It is important that everyone on the team stays on top of the IEP. This legal and binding document is supposed to ensure positive educational outcomes. If it is vague, without data to support it, without an agreed-upon plan, and without inclusion from parents, the student, and his or her support services, how can it truly help the student? If progress is not reviewed and questioned, how can effective supports be identified to increase positive outcomes?
Karen Kaplan, MS, is a native San Franciscan. She completed her bachelor’s and master’s degrees in speech pathology and audiology at Arizona State University, Tempe, Arizona. 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).
�� karenkaplanasd.com
ALL THINGS OT A New Way to Look at Sensory Dysregulation
By Laura A. Ryan, OT, OTR, OTD
The fine balance of sensory regulation, a steady and manageable stream of incoming information from all our senses, allows us comfort in our bodies and in our spaces. As we are neurological beings, we have this flow of incoming information and the need to balance it to feel good. When this balance is attained, we consider ourselves as being self-regulated. Those with more sensitive neurological systems can have more difficulty managing sensory information, often experiencing it as an onslaught versus a flow. Often, this onslaught leads to what we know as dysregulation.
Dysregulation is described by Dr. Megan Anna Neff, a neurodivergent psychologist who leads the blog Neurodivergent Insights, as a struggle to manage and respond to sensory input effectively, leading to a possible heightened or reduced reaction to that input. It can be helpful to think of one as having a threshold to sensory input. Those with a lower threshold for incoming information will have a quicker and more heightened reaction as their threshold is met more quickly. In comparison, those with a higher threshold have a slower reaction to information as it takes more input to meet their level.
A newer and more affirming frame of thought views dysregulation as a mismatch in energy between the individual and their environment. Sensory dysregulation can look like too low or too high energy and, more importantly, does not match nor support the energy demands of either the environment or the activity. This is an important distinction for two reasons.
First, and perhaps most importantly, it takes the onus off the individual experiencing dysregulation; instead, it looks
toward the spaces around the individual as the cause. How supportive is the thought that your genuine needs could potentially not be the reason for your discomfort?
Secondly, this frame of thought opens the discussion for a myriad of solutions for the mismatch, such as adjusting the environment or the activity so there is more success. Lastly, this frame of thought recognizes the dysregulation that is being experienced is valid and, perhaps, important. For example, a shift in energy leading to dysregulation during a school day task that is being completed just before lunch validates the importance of eating regularly to keep our body balanced.
A newer and more affirming frame of thought views dysregulation as a mismatch in energy between the individual and their environment.
Professionals, particularly occupational therapy practitioners (OTP), use a conceptual model known as the personenvironment-occupation (PEO). This model emphasizes the importance of each component (person, environment, and occupation) working in harmony with the others and recognizes that an incongruence between one or more of the components will negatively impact the ultimate result, which is engagement in meaningful occupations. By
analyzing where the mismatch stems from, an OTP or another individual can put accommodations or modifications into place to allow a match between the person, their space, and the activity they are attempting to engage in. In practice, this may look like encouraging the individual to wear earbuds to filter loud noises (adjusting the person), putting blue light-diffusing covers on the fluorescent lights (adjusting the environment), or using speech-to-text instead of typing or writing (adjusting the occupation).
An important movement in sensory dysregulation is looking at the energy mismatch between the individual and the activity they are expected to engage in. Autism Level UP is doing pivotal work with this concept and has created a tool called the energy meter. This tool has 3-5 energy levels extending from the lowest (perhaps described as asleep) to the highest (perhaps described as maxed out/frenzied). The top has two descriptors, including “energy for the activity/ match for the activity” and “my energy/where I am.” This tool is completely customizable, allowing one to put visuals along the left side and descriptors that match the visual. Some of the energy meters on Autism Level UP’s website (and available for download) include Disney princesses, MarioKart, dinosaurs, and dragons, to name just a few. The self and activity ratings on the energy meter can then lead
you to develop a personalized list of potential strategies to “match up” energy when a mismatch is being experienced.
Final thoughts
Understanding that sensory dysregulation is a typical response to a misalliance of sensory supports and the demands of the environment or activity is important, not only for well-being but also for determining an effective response. Sensory dysregulation should be recognized as being pivotal for safety, happiness, and success. Building a personal toolbox, and perhaps including the Autism Level UP energy meter, to reduce dysregulation and ensure effective participation in meaningful occupations will lead to a better quality of life, which is the ultimate outcome.
Resources
Neff, M.A. (2024). The power of sensory regulation; unleashing well being. Neurodivergent Insights. https://neurodivergentinsights.com/blog/thepower-of-sensory-regulation
Person-Environment-Occupation (PEO) Model. OT Theory. https:// ottheory.com/therapy-model/person-environment-occupation-peomodel
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 over 30 years and has been using hippotherapy as a treatment tool since 2001. She enjoys seeing the happiness and progress each person has achieved through the therapeutic impact of the horse. Laura has also developed a program for breast cancer rehabilitation using therapeutic input from the horse.
✉ hooves4healingot@gmail.com
EXCEPTIONAL ADVICE FROM MESHELL
Thoughtful Ways to Co-Parent a Child with Different Needs During Separation/Divorce
Divorce and separation may be difficult for a family as they adjust to the new dynamic in the household. According to a census report, about 21% of children under the age of 18 live with one parent. The transition of everyone not being in the same home can devastate the children in the household and can be particularly challenging for children with different needs. However, there are ways to make the transition as smooth as possible.
Co-parenting is defined as a parenting partnership maintained by divorced or separated parents to ensure their children have a stable and secure environment. Co-parenting requires both parental parties to find common ground to help the exceptional child and siblings comprehend that the change in the household does not change the unconditional love they hold for all their children, providing a secure emotional foundation.
As you embark on this new journey, it's crucial for each parent to adapt to the new living arrangements. Both parents should strive to find common ground, especially regarding the child's emotional well-being. Children express their emotions in various ways, and it's important to keep communication open to allow them to voice their feelings during this transition.
As a parent who went through a divorce, I know the transition took a toll on my children. The change from seeing a parent around the home to not seeing them in the home impacted the children mentally, but as a parent, it is your job to ensure the child that everyone is still cheering for their happiness. You can provide a happy co-parenting lifestyle that will help the child understand that, even though one of the parents has left the home, it does not change the fact that the child is loved and prioritized.
Here are some helpful tips for co-parenting:
1. Seek counseling/therapy
It might be beneficial for the whole family to seek counseling. Therapy encourages everyone to practice active listening and voice their feelings with the new transition in the home.
2. Coordinate schedules
Both parties must agree on what dates, appointments, and events they can collaborate on to ensure the child's needs are being prioritized.
3. Don’t argue
Whether you disagree about schedules, time, or visitation, it is best never to argue in front of your children. No aggressive texting, phone calls on speaker or Bluetooth in the car, or arguing in person in front of the children. If you are upset, take a breather and revisit the topic at a different time so that all parties collectively have a better headspace. Keeping the peace is the key.
4. Plan family outings or vacations
No matter what, you're still a family, and setting up a family outing or vacation is okay if you and your former
partner are amicable. Planning family outings is a good way to demonstrate to exceptional children that you can come together for special events, vacations, and social gatherings.
5. Incorporate holiday events
The holidays are always events that pull at your heartstrings. Just like family outings and vacations, it is okay to plan the holidays together. Whether you decide to decorate for a holiday or not, incorporate the children's ideas and both parents so everyone has a say in how to celebrate.
Parenting does not come with a manual, and co-parenting requires patience and understanding. Although you and your ex-partner have changed names and zip codes, one thing that cannot change is your participation and love for your children. In life, children will see change but teaching them that not all change is bad is the first step in showing them that a transition does not mean it is the end of the world.
Both parents should strive to find common ground, especially when it comes to the child's emotional wellbeing. Children express their emotions in various ways, and keeping communication open is important.
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 in the Los Angeles area. She has a Bachelor’s degree in human services from Springfield College and a Master of Science degree in human and social services. Meshell continues volunteering and giving within her local area while serving the special needs community.
�� Center for Autism and Developmental Disabilities
How My Writing Has Helped My Asperger's and Advocacy
By Julie Day
When I was diagnosed with Asperger's syndrome in March 2011, I decided to blog to raise awareness and share how it has affected me over the years, especially to people who knew me. It worked. A week or so later, after my first blog about being diagnosed, I went to a social gathering of children's authors. One of the others was a well-known author who told me he had read my blog and thanked me for letting him know. I was pleased. It spurred me on to continue blogging, which I still do today.
My dream
I became an indie author that year, too. By 2015, I enjoyed writing but hadn't found my niche in children's books. Then, one day, I had a dreamed about a boy called Billy who had
become super in front of his class because of his socks, but I had no idea why he needed to be super or what his socks did. At that time, I wanted to write more about having Asperger's and what it meant for me. I pitched ideas to a few magazines I found and published some articles and interviews in overseas magazines.
Then I got a chance to see the play The Curious Incident of the Dog in the Night Time, courtesy of a digital magazine I had pitched to. I was asked to review it as an autistic person watching the autistic character. Watching the play, I knew why my main character, Billy, was shy: he had Asperger's like me and didn’t like reading aloud in class. Again, like me. His socks helped him become confident enough to tell a story to his class. Then, the magical realism part came in. His socks
would take him to another world where he saw himself as confident. Billy would learn from that and copy it into the real world the next day. I had a series in mind, originally with different disabilities, but I discovered I didn't know enough about them to write authentically like I could about autism and other health issues. The series is my Rainbow School books where each autistic child finds confidence to make friends at school via the magical world.
Expanding my world of ideas
Once I began the Rainbow School series, I wanted to write more to raise awareness and acceptance of autism. I created the series from my own personal memories of my primary school days as an autistic child who found it hard to make friends and read out loud in class. I plotted it so the children used their hobbies and interests to help them overcome their anxieties. The series also has a coloring book. I found my niche. Not only did I enjoy writing about autistic characters, but I found that it was helping me understand what it was like being a child with undiagnosed autism. I wanted to give other autistic children hope and inspiration with my stories about their lives and future.
Then came 2021. After a year of being ill, I found out in February that I had a life-threatening bug in my blood and had to go to the hospital. I was in for nearly eight weeks, which included having open heart surgery to replace a heart valve, leading to a pacemaker being fitted. It was the thought of coming home, continuing a normal life, seeing my Mum again, and getting back to proper writing that got me through my ordeal. When I came home the next month, I'd decided to write short fiction only, e.g., children's books.
I found an idea for a series called The Pet Rescuers, which involved three of the minor characters from the Rainbow School books who had to travel to find missing pets. I wrote the first one in four months. Again, in this series, I have plotted it so that the characters use their interests and passions to help them overcome anxiety about asking for help searching for pets. Lyn is an artist, so she draws pictures of her missing parrot as posters to help others look for him. As she also knows her parrot the best, she can talk about him to people, so they get to know what he is like. It was a way to help my recovery, not just for me being out of the hospital but for my Mum too, who I lived with. When I came home, it was clear she wasn't the same person I had said goodbye to. She had become bed-bound and had dementia. I published that children's book in January 2023. The second book was published the following year. I have written the third one and am working on the fourth. My Mum sadly passed away in August 2022. My writing has helped me immensely through the loss and
grief of losing my Mum and now being on my own. It gives me something to focus on, and I don't know what I would do if I didn't write.
The future
So, what else have I planned for my children's autism brand? I have started publishing picture books for three to seven-year-olds about an unlucky autistic squirrel. I have ideas for younger fiction about children being helped by magical animals that help them overcome autism-related anxieties. I also have an idea for a collection of short stories about autistic teens who find out what they are good at with a bit of magic. My goal is to write autism fiction for all ages. From little ones to adults, highlighting that autism stays into adulthood. All these will be under my tagline/brand: Autism meets magical realism.
MY WORD
I have also written and published my memoir about having endocarditis (the infection that put me in the hospital). It did help me write it all down. I have written and plan to publish a second mini memoir about what has happened to me after that. It helped me understand what I have been through since, despite being in tears at times when I read about my Mum.
At the end of 2023, I decided I wanted to write for magazines again, which helped me understand my Asperger's more while giving hope and inspiration to parents of autistic children.
My writing has also helped me in other ways. Since I started writing in the late 90s, I have been a member of writing groups and attended meetings, talks, and other events. It helped me to travel about on my own to different places and meet different people. Although my Asperger's did show at these events, when I found it hard to listen to more than one group at a time, it was easier for me because we all had writing in common. This is a good tip
for autistics. If you find others with the same interests as you, it is easier to talk to them.
It wasn't just the writing groups that helped me and my autism. I had been participating in fairs at a local library, and at one event I met a lady who made handmade jewellery. At a later event, I found out that she had organized a pop-up market outside the library during the warm weather. I joined the group of crafter people in 2018 to sell my books. I still go there to date. In 2021, I learned that they also taught craft lessons, so I started going there. We made things such as greeting cards and decorated pots. It proved to be a lifeline for me because, at that time, I was caring for my Mum. This was tough for me, and going out somewhere that wasn't a hospital appointment helped me cope.
As a child, I always found it easier to write down my feelings rather than talk about them. Now, as an adult and author, I feel this is even truer, hence my autism advocacy with words
Julie Day is an indie author of magical realism for adults and children and a memoir about heart health. Through her writing, she raises awareness and acceptance of autism.
The Inland Empire Autism Assessment Center of Excellence (AAC) is a non‐profit, evaluation‐only center that provides a singular solution to a multi‐specialty evaluation process.
We provide the “Gold Standard” in Comprehensive Diagnostic Evaluations for autism and other neurodevelopmental disorders through a transdisciplinary team of experts in the fields of neurology, neuropsychology, occupational therapy, and speech and language pathology. We’re a trusted resource for thousands of caregivers and hundreds of physicians for children with medical, behavioral, sensory, social, or other complexities.
We look forward to collaborating in supporting the children and families of our shared community!
KATE MAKES IT GREAT! Ways to Help a Child Struggling to Navigate Social Communication
By Kate C. Wilde
Hello everyone! I enjoyed all the varied and interesting questions you sent about the amazing children and adults you care about. Thank you so much for taking the time to write in; keep them coming! I have chosen some fun questions that will help many of you.I hear you! We are raised to believe that more is better. We are continually asked to cram more things into an already very busy day! I have dedicated this issue’s article to the questions you sent in asking for help navigating these transitions with our loved ones with exceptional needs.
Michael from Idaho asks:
My 15-year-old son has Asperger’s. He can fully communicate his needs and wants and loves to talk to people. He is, in fact, super social. He will talk to everyone he meets. I realize that this is good. However, my problem with it is that he has no social filter. Here are a few of the things he will say: “Your nose is really big,” “Your breath is stinky” or “You’re old; you must be a hundred.” I get really embarrassed about this, and no matter how much I tell him off for doing it, he can’t seem to help himself. It is quite frustrating. Any help with this will be much appreciated. Thank you in advance; I look forward to reading your answer.
Hi Michael, thanks for sharing your question about your son with us. He sounds awesome! It sounds like he is making these statements not as a button push (to see another person’s reaction) but as a genuine way to connect with another person. If you decide to see it that way, it could be something you see as touching and rather beautiful. Something to embrace and make friends with. Seeing it in a more innocent way may help you not only be less
embarrassed but also see the humor in what is happening. Seeing humor can help everyone involved not to take his honest statements too seriously. It will also help you approach helping him with what to say when he wants to make a connection and have a more fun and friendly experience for him and you. We all learn more easily when in a fun and friendly environment.
Learning what to say and what not to say is harder for our neurodiverse friends than you may think. For neurotypical people, it is something we pick up quite quickly as our brains are already wired for it, but that is not the case for your son. Having compassion for his steep learning curve will help you have patience as he traverses the pitfalls of social etiquette. Not only are they complicated, but they are always changing! What you can and cannot say today differs from what you could say ten years ago. It can even be hard for us to keep up, too!
On a practical level, one thing you can begin to instruct him on first is to explain to him that most people like to be complimented. Guide him to prefix any statement he wants to make about another person with, “I like x.” The other person is likelier to appreciate his comment and want to keep talking with him. If he does not like something about the person, like their “stinky breath,” that is better kept to himself.
Help him with this by:
• Roleplaying these types of statements and conversations with him, including an older sibling who can help (if they are willing), and other family members.
• Before any outing or gathering remind him of the plan.
• After a gathering or meeting, sincerely celebrate all the wonderful and successful ways he has engaged with others. Point out what worked instead of focusing on what did not. This will highlight the direction you want him to go in and help him feel more successful.
Chetana from India writes:
Hi Kate, I have always read your column and am so happy that I can ask you about my daughter. She is only six, but I often think she is wise beyond her years, a true gift from God. She is very sweet and no bother to anyone; there is just one little thing that I find really challenging and, dare I say it, a little disturbing. I think it is a stim. She lines up her soft toys, then goes to each one, touches them on the nose, and says, “Bop! You are going to die soon.” She looks happy when she says this, as if she is enjoying herself. Should I be worried? What does it mean, and how can I get her to stop it?
Hi Chetana, no, you do not need to be worried. I am assuming that you feel a little disturbed by this stim because your daughter is mentioning death. Death is a natural part of life. A part that affects all beings no matter their age. Your daughter has most likely had some experience with it, whether it is in real life with a friend, a family member, a pet, a plant, or reading about it in a book. Whether you are neurotypical or neurodiverse, this is a big subject to understand and get your mind around. Death can become a part of many children’s play until it is properly processed. Your daughter's play is the stim. It makes sense that she would incorporate the death concept into a stim. This will most likely disappear when she has processed it enough.
Death is part of everyone’s life; nobody escapes it! Embracing it and being open will help your daughter process it more easily.
Once you feel more relaxed, you can take another step that will help you both feel more connected to each other while she is stimming. Synchronize with this and all stims.
How to synchronize:
• Do what she is doing physically and verbally.
• Get soft toys and line them up (about 3 or 4 feet away from her).
• Then go to each one and touch their nose, saying, “Bop! You are going to die soon.” In the same way that she is doing it.
• Do this for as long as she is doing it.
By taking part in her activity, you are letting her know:
• That you love her.
• That she is not alone.
• That you can be trusted.
Synchronizing will strengthen her relationship with you and open doors for more connection, interaction, and communication.
One other point is that stims are often very pleasurable for our loved ones on the spectrum as they help them regulate their nervous systems. Looking happy is more likely to be about her nervous system calming than about her toys “dying” soon.
Chetna and Michael, I am cheering you on. Write in and let us know how it goes.
See you all 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. �� www.katecwilde.com/ �� 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.
SAFETY GOALS WITH NICOLE
REDUCING THE RISK OF ABUSE WITH CHILDREN WITH DISABILITY
Developing a Plan for Our Disabled Child's Future After We Are Gone
By Nicole Moehring
When we have children, thinking about their future is supposed to be a happy time. It involves looking for colleges, planning weddings, helping them with their first house, and eagerly anticipating the arrival of our first grandchild. However, when our children have disabilities, the thought of their future can often be overwhelming, filled with sadness and anxiety. It can be tough to think about a time when we may no longer be able to take care of them due to health issues or death. Making plans for the future of a child with a disability involves making crucial decisions that will have a profound impact on their life.
Parents of children with disabilities carry a heavy emotional burden as they understand the immense impact they have on their child's quality of life. The thought of what will happen to their child after they are no longer around weighs heavily on their minds. As a parent in this situation, I often find myself contemplating the future and the potential challenges my son may face once my husband and I are no longer there to provide care and support. This concern is a significant part of our daily lives, and it's something that many parents in similar situations can relate to.
Ensuring you have the appropriate legal documents to protect your child is essential. Depending on the date when you initially created these documents, you may need to develop new ones or update the existing ones. These legal documents may include but are not limited to wills, trusts, Power of Attorney, Letter of Intent, healthcare directives, and Guardianship.
Once your child turns 18 and legally becomes an adult, you will no longer have the authority to make decisions on their behalf for their health or welfare, and therefore, a Power of Attorney will not be required for decision-making. It’s important to begin planning before they turn 18.
If your child lacks the capacity to make decisions for themselves when they turn 18, you can seek to become their legal Guardian. This involves the court appointing a person to make decisions on behalf of adults with disabilities. It's important to note that Guardianship is a highly restrictive measure and may only be granted if there is evidence that less restrictive alternatives are not feasible.
A will
If your child receives Social Security (SSI/SSDI), you will want to ensure that no inheritance goes directly to your child when you or a family member passes away. Instead, you can set up a Special Needs Trust for any money your child should receive or inherit, which will be protected.
The guardian
While creating your will, it's important to consider who will care for your child if something happens to you. You need to choose someone to take on the responsibility of raising your child and become their guardian if necessary. The legal process of establishing guardianship involves court intervention and the appointment of a legal guardian who is responsible for making decisions about the child's upbringing, education, healthcare, and general
welfare. The guardian is obligated to provide a stable and nurturing environment for the child and make decisions in their best interest.
A Special Needs Trust
A special needs trust is a legally binding arrangement in which a trustee holds and manages assets on behalf of a person with a disability, such as autism, to secure their financial future without impacting their eligibility for government benefits. The trust is designed to provide for the individual's supplemental needs while safeguarding their access to essential support programs. The trustee has a fiduciary duty to administer the trust in the beneficiary's best interests, ensuring that the funds are used to enhance their quality of life and provide for expenses not covered by government assistance. This trust structure offers a crucial financial planning tool for individuals with disabilities, granting them a measure of financial security and peace of mind.
Representation of Payee
The Social Security Administration (SSA) may determine that an individual receiving benefits necessitates a payee to oversee their income. If an individual contests the administration's appointment of a payee, they must furnish evidence demonstrating their capacity to manage their finances independently.
A Letter of Intent
With this document, you can create or update to support the life plans of your adult child as outlined in their person-centered plan. While it is not a legally binding document, you can keep copies of it with your will to demonstrate that your intentions align with your child's ability to make decisions about their life, considering their level of disability.
Nicole Moehring’s daughter and son, who has autism and Fragile X Syndrome, were both victims of sexual abuse. As a mother suffering through this unbelievable nightmare, Nicole witnessed extreme differences in the justice system in terms of how her daughter was believed and treated so well and how her son was not. In addition, she 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 disability-led national organization piloting our groundbreaking programs in Ohio. Their mission is to reduce the risk of abuse, neglect, and exploitation of children with disabilities. By sharing their lived experiences and through collaborations with law enforcement, mental health, medical professionals, and other similar organizations, they are building a foundation of advocacy, awareness, education, resources, and support for children with disabilities and their families. �� voicesofchange2018.org
linkedin.com/company/voices-of-change-2018
info@voicesofchange2018.com
facebook.com/voicesofchange2018/
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My Child Inherited My Disability
By Dr. Ronald I. Malcolm, EdD
If you have just discovered as a parent with a disability that your child may have inherited the same diagnosis, you might be struggling to process this news. Here are ten tips for effectively coming to terms with and navigating the reality that you and your child have a similar diagnosis.
1. Understanding inherited disability
While some in the non-disabled community may believe that all adults with disabilities who have children will have a child with a disability, that is simply not true. Most children with a disability are born to two parents who are non-disabled. However, some genetic disorders can be passed down from a parent to their child.
2. Positive perspective
Some adults who present with a disability actively seek to have a child with the same disability. Members of the
Deaf Community are not always upset when told that their own child is also Deaf. Many members of the Deaf Community do not view Deafness as a disability. They highly value being an active part of the Deaf Community and embracing Deaf Culture. Parents who are from the Little People Community often feel the same way. Then, some parents have various disabilities and hope that their children do not inherit those disabilities. They may be upset or feel a sense of guilt for passing their disability on to their child.
Keep in mind that children who have parents with a disability tend to have an “average to better than average” development. This may be because parents with disabilities can be more skilled at solving daily problems, demonstrate more compassion, are more sensitive to community justice issues, and have a healthier outlook on the issues of disabilities in general.
3. Counseling
Parents with disabilities who experience depression or a sense of guilt or shame for passing their disability on to their children can seek professional assistance. By attending counseling sessions, they can learn to express their feelings and work through their emotions. They can begin to see the positive role model they can become to their child with a disability.
4. Genetic testing
Some parents with a disability who discover their child has the same disability may become concerned that their future children will also possess the same disability. They may also worry about their future grandchildren. If this is a concern, you can always consult with your family doctor to have some genetic testing conducted to determine the likelihood of this disability being passed on to other members of your extended family.
5. Being the expert
Most children with a disability do not have access to an adult in their home who possesses the same disability. It can be an advantage when parents with disabilities already know the barriers that exist for people with disabilities in their local community. This makes them a great resource for assisting children with disabilities in navigating this process. Many children who possess the same disability as their parents have a high level of self-esteem and motivation surrounding being disabled. Their parent with a disability becomes a highly valued role model for them to achieve the success they wish to obtain in life. In fact, many children with the same disability as their parents don’t fully comprehend initially that there is any concern surrounding the disability. How they do things in their home is perfectly “normal” for them and their parents. In addition, most parents with a disability already know the local resources available in the community and can quickly explain the necessary accommodations that their child may require.
6. Siblings
Just because a parent with a disability has a child with the same disability does not mean that all the siblings in the home also share the disability. Attention must be paid also to the non-disabled siblings in the home. Many times, siblings who are non-disabled sense the strong bond that exists between their parent with a disability and their sibling who also shares that disability. It can
create a sense of friction in the home, with many nondisabled siblings feeling a sense of not belonging or jealousy towards their sibling with a disability.
7. Navigating the school system
Another benefit of having a parent who shares your disability is that they have probably learned how to navigate their day when they attended public school successfully. While the public school system is not perfect, it has come a long way in terms of the rights of children with disabilities to be educated alongside their non-disabled peers. A parent with a disability can assist their child with a disability by being actively involved in the school system, explaining accommodations to regular educators, and working effectively with their child’s IEP Team at school.
8. Non-disabled students and friends
Children without disabilities may be very curious about your child’s disability and yours. As a parent with a disability, you can offer to do presentations for children at your child’s school. In a safe and relaxed
atmosphere, you can create a climate where nondisabled children feel they can ask you open and honest questions. It will also allow your child to see you are not ashamed of your disability and are willing to answer appropriate questions.
9. Myths and stereotypes
Parents with disabilities who have children with the same disability can do an excellent job of helping their children navigate the inappropriate or rude responses they may encounter from non-disabled people in the community.
There have been non-disabled people ask a parent with a disability in front of their child with the same disability why they never considered adoption. Young people
in the non-disabled community may assume that the child with the disability “caught” it from the parent with the disability. They may avoid your child for fear of “catching” their disability. Others in the community may demonstrate a sense of “pity” towards both the parent and the child or view them as a shining example of “inspiration” since they do similar daily activities as their non-disabled community members do. Whatever the case may be, an adult with a disability can be a visual and active role model to their child by correcting these myths or stereotypes.
10. Asking for help
Many adults with disabilities struggle with asking for help. They don’t want to appear “needy” or “unable” to handle their own affairs in life. However, some disabilities significantly impact what a parent with a disability can physically do. If this is the case, the parent needs to feel no shame in reaching out to others for help. You don’t need to prove you are a “Superhero” by not asking for any assistance. Many non-disabled parents request help daily for their children with a disability. There are programs in your community that can assist you.
You can seek assistance from social workers, church members, friends, social workers, and disability advocates. Family members can also provide additional assistance if you trust them enough to contact them. Sometimes, all parents, regardless of the child being disabled or not, just need a break. It is not a sign of “weakness” to ask for assistance or to delegate a task.
Children with disabilities who also have a parent in the home with the same disability pay particular attention to that parent. That parent can demonstrate that their disability doesn’t define who they are for their entire life. You can model that an adult with a disability can have a successful career and family life.
References
Family Formation. (2006). Children with Parents with a Disability. Australian Bureau of Statistics.
Dr. Ronald I. Malcolm, EdD, works with students with disabilities in the Northwest Arctic. He recently retired as an Assistant Director of Special Education for a public school district. Dr. Malcolm is also an Associate Faculty Member with the University of Phoenix and a Special Graduate Faculty member at the University of Kansas. He has Bachelor level degrees in English and Special Education. He holds Master level degrees in Counseling, Special Education, and School Administration. His Doctorate degree is from Northern Arizona University in Educational Leadership. 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.
As they rock back and forth in their own special world
While grown-ups grow frustrated with lips tightly curled
Then bursts of brilliance they reveal as they race
While tears of love roll down a parent’s face
Expectations often missed but still they yearn
Wondering today what skills they will learn
We hope for the ones who don’t quite fit the mold
That the world will be kind as they grow old
We know that the bullies will play their cruel game
Reality is, cruelty sometimes brings shame
But optimism lives in each heart and mind
Of parents and professionals who continue to be kind
With a network of supporters shining bright as the sun
The ones who don’t quite fit have already won
Nobody knows the future
So why pretend?
Let’s celebrate their victories!
May they never end!!!
Gary Shulman, MS, Ed has spent a lifetime supporting vulnerable families and children. He began his career working with children with and without disabilities in an inclusive Head Start program in Brooklyn, NY. He then transitioned to becoming the Special Needs and Early Childhood Coordinator for the Brooklyn Children's Museum for 10 years. His passion for advocacy grew as he worked more and more with parents of children with disabilities. For over 24 years, he has advocated for the needs of these parents as the Social Services and Training Director for Resources for Children with Special Needs, Inc. in NYC. During the last years of his working life, Mr. Shulman served as a private Special Needs Consultant, conducting hundreds of training sessions throughout NYC and beyond to help parents and professionals find and access the services and systems required to facilitate maximizing the potential of their children with disabilities. Now retired in Arlington, VA, but still supporting vulnerable families, serving as an Advisory Commissioner for the Arlington Partnership for Children, Youth and Families. Gary continues his workshop presentations virtually and now also enjoys sharing the poetry that he passionately writes with the goal of leaving this world a better place one word at a time.
Obsessive-Compulsive Disorder: Tips for Stopping the Cycle
ByJanStewart
When my nine-year-old son Andrew suddenly started repeatedly touching walls for hours, I was perplexed. I became frightened when he rubbed his head against bushes and poles. And when he got down on the filthy subway floor and started to gnaw it, I became numb. What was happening?
He told me his brain was “forcing” him to engage in these rituals to stop terrifying thoughts in his head that my husband and I would die, or his sister would be kidnapped. He knew these thoughts and rituals made no sense, but he was helpless in stopping the cycle.
This is the face of obsessive-compulsive disorder (OCD).
What is OCD?
The International OCD Foundation (IOCDF) defines OCD as a serious mental health disorder that occurs when an individual “gets caught in a cycle of obsessions and compulsions. Obsessions are unwanted, intrusive thoughts, images, or urges that trigger intensely distressing feelings. Compulsions are behaviors an individual engages in to attempt to get rid of the obsessions and/or decrease distress.
“In order for a diagnosis of OCD to be made, this cycle of obsessions and compulsions must be so extreme that:
• It consumes a lot of time (more than an hour every day)
• Causes intense distress, or
• Gets in the way of important activities that the person values.”
Obsessions can cause great anxiety, disgust, guilt, anger, anguish, and shame. The person knows they are illogical but cannot stop them. Common obsessions involve a fear of:
• Germs
• Becoming sick or dying
• Hurting someone
• Making mistakes and not being “perfect”
• Offending God
• Romantic and platonic relationships
Some of the most common compulsions include:
• Repeatedly washing your hands until they are raw and bleeding
• Checking over and over that you didn’t hurt your loved one
• Counting to a “safe” number for hours
• Constant reassurance-seeking
• Continually praying or asking for forgiveness
• Repeatedly touching or tapping objects
The IOCDF estimates that 1 in 100 adults and 1 in 200 kids and teens have OCD. Over 90% of people with OCD also have a co-occurring disorder. It can occur at any age, although it tends to be identified between the ages of 8 and 12 or in late adolescence/early adulthood.
The exact cause of OCD isn’t known, although both genes and environmental factors like stress and trauma play roles.
Unfortunately, a lack of awareness and education about OCD can lead to fear, stigma, and misunderstandings. The myth that “everyone has a little OCD” or “I’m so OCD” trivializes this disorder and the disruption and pain it causes in people’s lives. Just because you like to keep your home clean, and your desk orderly does not mean you have OCD!
How is OCD treated?
Medical, lab, or blood tests do not identify OCD; instead, psychiatrists ask about symptoms, thoughts, feelings, images, urges, and history. The IOCDF notes that “some estimates indicate that it can take up to 14–17 years from the onset of symptoms for a person to get an appropriate diagnosis and effective treatment.” This should not be acceptable to any of us!
The good news is that evidence-based therapy and/or medications are often effective.
First-line medications include anti-depressant SSRIs, selective serotonin reuptake inhibitors, which increase serotonin levels (a chemical that carries messages between nerve cells) in the brain to ease symptoms.
Exposure and Response Prevention (ERP) is the gold standard in therapeutic treatment. ERP is a type of cognitive behavior therapy in which a therapist helps the individual learn to confront their distressing thoughts (exposure) and teaches their brain not to respond to these thoughts through rituals (response prevention). Picture a child terrified of germs slowly learning to tolerate getting their hands dirty for longer periods and not reacting by engaging in rituals. The child learns to face their fears, irrational and powerful as they may be, and sit with the discomfort.
Andrew learned that while he couldn’t control those thoughts plaguing his mind, he could let them wash over him and not respond through rituals. His therapist also
MENTAL HEALTH
asked him to give his OCD a name to separate his identity from the OCD. He named it “Howie” (this was years before Howie Mandel disclosed his own OCD!).
The IOCDF reports that about 7 out of 10 people with OCD benefit from either medication or ERP.
What about other treatments for OCD?
British psychotherapist Stuart Ralph, who has OCD himself, co-founded The Integrative Centre for OCD Therapy three years ago. Using an individualized, holistic approach, it combines techniques from different therapeutic approaches depending on a child’s needs. In addition to ERP, these encompass:
Acceptance and Commitment Therapy (ACT), which encourages the acceptance of thoughts and feelings rather than fighting them. Paired with mindfulness-based therapy, ACT makes space for our thoughts and feelings and works to build psychological flexibility. “If your legs aren’t flexible, you might pull a muscle if you sprint; the same applies to the brain, with its rigid OCD”.
Compassion-Focused Therapy focuses on magnifying our inner compassionate voice and combatting our inner critic.
Other treatments, including Inference-Based Cognitive Behavioral Therapy, deep brain stimulation, mobile app interventions, wearable and mobile technology, and changes to diet, are being studied to validate their effectiveness. Non-surgical temporal interference electrical stimulation is also actively being researched.
Ongoing research is also studying causal factors of OCD, including potential deficits in introspection abilities and the immune system, with hopes of new, effective interventions.
What about family involvement?
A critical part of treatment involves loved ones learning not to accommodate their child’s OCD. For example, we might take a longer route to an appointment because the
direct route upsets our daughter. We might do the dishes for our son due to his fear of germs. And we might fall into the trap of reassuring them that God is not angry at them. I’ve certainly caught myself inadvertently responding to Andrew’s constant reassurance-seeking by letting him know everything’s fine!
A critical part of treatment involves loved ones learning not to accommodate their child’s OCD.
While well-meaning, these accommodations actually fuel the OCD. As Stu explains, “The child learns to rely on us for regulation around their OCD, just as they rely on compulsions for regulation. Accommodation heightens their OCD.” I had to learn that if we were going to be late to an appointment because Andrew couldn’t open the car door, we would be late. There was no active involvement on my part, no accommodation, no excuses.
What resources are available for OCD?
With greater awareness and interest in OCD, there are many helpful resources. These include educational resources, books, websites, blogs, podcasts, apps and the IOCDF website @iocdf.com. The IOCDF has a quarterly newsletter, conferences and lists of referral sources, advocacy groups and support groups for both individuals with OCD and their caregivers.
Stu hosts The OCD Stories, one of the most respected podcasts about OCD. Created in 2015, he aims to provide information that “lights a path in the darkness and offers solutions.” The podcast offers a beacon of hope and inspiration for those who suffer from OCD, their family members and caregivers, friends, therapists, and researchers.
I recently listened to two episodes for families:
• Episode #442, July 2024: OCD Therapy for Children and Teens, where Stuart discusses how he adapts ERP and ACT for children and teens with OCD, the other therapies he integrates, self-compassion, how parents and caregivers can help their children, and what he would tell his younger self.
• Episode #306, December 2021: SPACE for OCD (Families), where Stu interviews Dr. Eli Lebowitz, who developed the Supportive Parenting for Anxious Childhood Emotions approach at the Yale Child Study Center. This parent-
based treatment helps caregivers change their own behaviour by learning to respond more supportively to their child and reduce OCD accommodation.
The OCD Stories airs weekly on all major platforms and has been downloaded over seven million times.
Stu’s top advice for parents and caregivers:
• Keep reducing accommodations. Help your child by not being “helpful” to their OCD but do so gradually and compassionately.
• Acknowledge your child’s emotions while giving them confidence: “I know you are in distress, but I also know you can handle this and ride it out.”
• Take time for self-care, even if you can only find a few micro-Moments, for example, listening to a favorite song while waiting in line at the post office.
• Reach out to other parents and caregivers of children and adolescents with OCD.
• OCD is treatable. It can be complex, with complications, but don’t lose hope. Keep learning and implementing.
OCD is a monster named Howie in our family, but it is manageable and controllable. It lurks in the background and sometimes rears its ugly head, but it’s been extraordinary to watch Andrew blossom into a confident young man unafraid to confront those thoughts and move forward with his life. There is help. There is hope. Hold on tight!
Jan Stewart is a highly regarded mental health and neurodiversity advocate, author, and parent. Her award-winning memoir Hold on Tight: A Parent’s Journey Raising Children with Mental Illness is brutally honest and describes her emotional roller coaster story raising two children with multiple mental health and neurodevelopmental disorders. Her mission is to inspire and empower caregivers to have hope and persevere, as well as to 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, and was previously Vice Chair at Canada’s 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.
�� janstewartauthor.com
LOOSE PARTS PLAY: THE NATURE VERSION
By Amy Wagenfeld, PhD, OTR/L, SCEM, EDAC, FAOTA
Simon Nicholson, an architect and artist introduced the concept of loose parts in his article, The Theory of Loose Parts: How NOT to Cheat Children about 50 years ago.
Regardless of its identification as a type of play, I think we can confidently assume that loose parts play is one of many ways that children have always played. Do you recall from your childhood “free ranging” around where you lived, finding whatever materials presented themselves and creating a whole world of play around them? Nicholson defined loose parts as materials, natural or man-made or manufactured that children can manipulate, experiment with, create and invent with, and generally do whatever they want. The key and beauty here is doing whatever you want with the materials.
Lacking set directions that accompany loose parts play, it is limited only by safety, any existing built or natural environmental constraints, and the far reaches of children’s imagination (Neill, 2013)
When I was young, we lived in what was then a rural part of southwest Michigan. Our neighborhood (originally a cornfield) was still under construction, and our favorite place to play was the empty lot at the corner. It was full of loose parts, such as weeds, tree limbs, rocks, and likely somewhat dangerous objects, that I am conveniently forgetting about! We spent hours gathering materials and creating so many things like pirate ships, forts, campsites (with no fire), stores, and whatever came to mind. It was a time when many neighborhood children gathered, and
we created on-the-spot rules to govern our gathering and play. It was not without conflict, which is a good thing as the conflict forced us to negotiate all aspects of our play.
I like to think about loose parts play as a combination or mixture of sensory and creative play. Thus, it works well in solitary, dramatic, and social play situations. Like much of what we know about the benefits of play, loose parts play and having ample opportunities to engage in it support children’s cognitive and social-emotional development (van Dijk-Wesselius et al., 2018). Barring safety and any developmental concerns, the sky is the limit to what children can do and discover with sticks, branches, acorns, buckets, mud, leaves and pebbles, bits of string, buckets, strainers, and the likes (Houser et al., 2016).
Summing up
The bottom line is, while further research is needed to tell us exactly what benefits loose parts play has on overall development, what we do know, is that loose parts play is fun, and appears to enhance active and unstructured play (Houser, et al., 2016). Whether loose parts play is initiated and facilitated by you or your child gathering up items that spark your imagination, providing your child with the space and opportunity to let loose play commence in ways that are meaningful for them, whether inside or outside, is invaluable.
References
Houser, N., Roach, L., Stone, M.R., Turner, J., & Kirk, S.F.L. (2016). Let the children play: Scoping review on the implementation and use of loose parts for promoting physical activity participation. AIMS Public Health, 3(4), 781-799.
Neill P. (2013). Open-ended materials belong outside too! High scope. 27, 1–8.
Nicholson, S. (1971). How not to cheat children: The theory of loose parts. Landscape Architecture, 62, 30–35.
van Dijk-Wesselius, J. E., Maas, J., Hovinga, D., van Vugt, M., & van den Berg, A. E. (2018). The impact of greening schoolyards on the appreciation, and physical, cognitive and social-emotional well-being of schoolchildren: A prospective intervention study. Landscape and Urban Planning, 180, 15–26. https://doi.org/10.1016/j.landurbplan.2018.08.003
Amy Wagenfeld, PhD, OTR/L, SCEM, EDAC, FAOTA, is Principal of Amy Wagenfeld | Design and Lecturer in the PostProfessional 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 evidencebased 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. �� amywagenfelddesign.com �� workjournal.org/nurture-through-nature
Planning for the Future with Special Needs: It’s Double Difficult
By Keri Horon
For the 37th time this week, I put fingers to keyboard to resume working on a document that could mean the difference between life and death for my son. He is a 24-year-old young man with special needs. One of those needs is verbal language; he doesn’t speak words with his mouth. His form of communication is obviously different. As parents, my husband and I rely on our knowledge of him to think about and meet his current everyday needs.
Our son communicates; it just takes knowing him and being patient with him to decipher what he wants to “say.” Because of this communication difference and a thousand other things, my husband and I need a plan for his ongoing care. As we age, we recognize it is of utmost importance to have a plan for how he will be cared for when we are no longer able to provide daily care. So, as special needs parents, we are simultaneously tending to current needs and planning future care needs. It is a heavy load.
Parents of typical children generally do not have to consider a plan for the continuing care of their adult child. Of course, most parents consider and prepare legal documents like a last will. Trusts, wills, advance directives…there are crucial steps that any parent needs to take in planning for the inevitable. Special needs parents, however, come to the realization that at some point in the future, their child will require care that cannot be provided by the parents due to old age, health restrictions, and/or the death of the parent. Preparation goes beyond a last will and testament. This reality presents an unexpected and often unpleasant chore that lingers in the minds of parents in this position.
I embarked on the planning ahead journey over a year ago and have not finished what I set out to do. Planning for the future care of an individual with complex needs weighs heavy on the minds (and hearts) of special needs parents
like me. They (and I) must come to terms with the sobering reality that their precious child may not be able to care for themselves physically, emotionally, financially, and more at any time in the future. And what’s harder to accept is the persistent thought that nobody is going to care for my son the way my husband and I do.
So, with the weight of these thoughts, first deciding on and then prioritizing the development of a plan becomes a beefy task. The way I have experienced it so far is that writing (in as much detail as possible) is a demanding mental task requiring concentration, thoughtfulness, and succinct memory. Translating what I do daily for my son into cogent and articulating written directions on how to care for him is inherently arduous.
But the flip side of that is how I feel emotionally as I engage in the writing of the plan. There is a mental component plus an emotional aspect to this critical mission. It’s doubly difficult. It doesn’t always feel so good to be working on a plan that will be put into action upon your own death. It can be downright depressing.
How does a parent face this enormous mental and emotional duty? It is a question I have frequently asked myself. As I’ve ventured into the task of planning for future care, this question circles my mind daily.
In my mission to capture all the information I know about my son and put that knowledge into an ever-growing document, I have rapidly realized how challenging it is to effectively express and elucidate for another person everything I do for my son. We will need someone to know exactly what to do, day in and day out. His happiness, well-being, and safety are in my hands every single day. He relies on my husband and me for hygiene, nutrition, medical
PARENTAL SUPPORT
needs, and so much more. To envision someone else taking over for us…someone stepping into our shoes and fulfilling this role…it’s almost unimaginable.
Therein lies the drama, so to speak, about life and death. Without detailed knowledge of how to care for and protect our son, someone could easily overlook an essential piece of information that could put our son’s life at risk.
Any parent who has not considered such a plan should consider one. Any parent (like myself) who started on such a plan should complete it (of course, it is a fluid document or collection of documents that will require updating over time). Any parent who may think they don’t need one should think again. The future is not guaranteed. We don’t know how much time we have.
One thought that keeps me working on the plan is that I do not want to leave out any key information about my son’s life that would keep him happy and safe. I want to capture it all so that a future caretaker will know what to do. I would hate for someone to have to figure it all out from square one. My husband and I have decades of experience and hard-earned knowledge about our son. Giving what we know to someone else when the time comes can only be a gift.
So, as I return to the keyboard for the 38th time this week and open the 64-page document, I will acknowledge that it is both a mental and emotional task that I strive to complete. One smile from my boy across the room, and I know I am doing the most important job ever.
Keri Horon is one part educator, one part journalist, one part writer, and 97-part Mom to a special needs son. Keri is a Marquette University graduate with a BA in Journalism and received her teaching credential from CSU, Fullerton. She taught high school English and yearbook publishing for 25 years. Before teaching, Keri worked for a Chicago-based lifestyle magazine. Finding herself the parent of a child with special needs, Keri applied her skills and talents for teaching, investigating, and writing to become a strong advocate for her son.
She has worked as a Peer Coach for the M.I.N.D. Institute at U.C. Davis and as a WarmLine Family Resource Center community parent. She has written blogs for several websites and has helped manage customer service requests for Vest Life, a special needs cloud-based navigation tool. Keri runs and writes stories and poems for her own special needs parenting website. Her interests include traveling, painting, thrifting, photography, gardening, and upcycling furniture.
Executive Function: A Practical Overview of a Misunderstood Term
By Robin Tate MA, MS, BCC, ACC, CAS
Executive what?
In the past decade, it's increasingly common to hear me talk about this thing we call Executive Function or, more accurately, Executive Functions (EF). In working with neurodivergent adults and neurodiverse couples, colleagues often highlight my strength in understanding this commonly overlooked brain difference. Initially, I responded in awe of the irony of what they did not know: that understanding EF for me did not come from professional courses; my understanding grew out of the resilience necessary to achieve anything despite having significant EF challenges myself. Since then, the responses (curiosity, “aha” Moments, acceptance, offense, and glazed-over dissociated eyes) have driven me to learn more and articulate better for others; what is this thing called EF?
My first introduction to EF was in the Fall of 1992, and as stated, it was not professional at all; it was personal and very practical. When I refer to this time, I know wholeheartedly that learning about EF strategies was my “survival.” I was barely headed into my sophomore year of college on academic probation, permitted to stay yet required to take a study skills class that would become foundational to eventually achieving my bachelor’s degree.
I was working very hard to “do” college with undiagnosed attention-deficit/hyperactivity disorder (ADHD) and multiple learning challenges, the greatest of which I came to realize is rooted in EF challenges. I was working twice as hard as my peers and failing miserably; the helplessness and fear that I would not “survive” consumed my every waking Moment. Anxiety and depression were also unknowingly present and
taking turns as they do, working against me. As a strength, I was resilient, though, and as long as there was a chance for success, I was blindly invested in it. I attended the required class, which initially felt like punishment, only to realize that the course was more like an oasis. The tools I gleaned were primarily based on accommodating my EF challenges and, without knowing, led to my work with neurodivergent clients today. So, what is this thing that I claim saved my life and led to my professional success? Let’s jump in.
EF is hard to define and, as Dr. Russell Barkley explains, is, in a confusing way, used interchangeably to describe two different related things. One definition of EF is that they are neural pathways in the brain responsible for reaching any
goal from initiation to achievement. These neural processes are primarily housed in the prefrontal cortex yet networked throughout the brain. They are present in every person’s brain. EF is also used to describe the behavior resulting from the strengths and challenges present in someone’s neurological processes. To differentiate, some people refer to these as EF skills vs EF processes. Most use the umbrella term EF to describe both.
Ok, now you know the term EF can be used to describe specific neural pathways, and we know it can be used to describe the skills that result as a strength or challenge from those neural pathways. So, what are these skills, and why are they so essential?
Like the definition of EF, the functions that the EF processes produce are not clearly defined. Inconsistency is still present between professionals. This inconsistency is, at large, what leaves people, even professionals, with eyes glazed over, offended that one would suggest that they have EF
challenges or faking their understanding of the term. One Google search will result in pages of articles on EF, yet it's rare to find two that match in their explanation of the skills represented as EF. Furthermore, the articles nearly always discuss the challenges of EF, overlooking the reality that most people also have EF strengths.
Lost in this maze of confusion, I stumbled upon a wellknown work in the ADHD community (a neurotype primarily defined by its EF challenges), Peg Dawson and Richard Guare’s Smart but Scattered. Their book lists 12 commonly accepted EFs that can be a strength or a challenge for anyone. These EFs are Response Inhibition, Working Memory, Emotional Regulation, Task Initiation, Sustained Attention, Planning and Prioritizing, Organization, Time Processing, Flexibility, Metacognition, Persistence, and Stress Tolerance. The names of these specific functions begin to create understanding, and the definitions will bring even further clarity.
In Chapter 8 of the book Uniquely US, I provided the definitions of each EF below. Once you have read through these, I will say goodbye with one step you may take as you continue to develop your awareness of your EF strengths and challenges.
Dawson and Guare’s 12 Executive Functions:
1. Response Inhibition: Another word for this is selfcontrol.
2. Working Memory: The ability to hold information (verbally and non-verbally) in your short-term mind and manipulate it to use it.
3. Emotional Regulation (ER) /Self-Regulation (SR): This can also be referred to as self-restraint or inhibition. It is the ability to manage your emotions in a way that matches the situation and allows you to be productive.
4. Task Initiation: The ability to start a desired task when you want to start and/or when it's expected that you will begin.
5. Sustained Attention: The ability to keep your focus on a task until it's complete.
6. Planning/Prioritization: The ability to lay out all of the what, when, where, why, and how of a task, as well as the ability to order the tasks by importance as dictated by the intensity of need, deadline, or sequence.
7. Organization: The ability to create and manage systems to keep track of your things (concrete or electronic) and ideas.
8. Time Management: The ability to manage time in the present and the future. The ability to predict how long a task will take and to operate within time restrictions. It also recognizes when time is essential and tracks time.
REFLECTIONS
9. Flexibility: Flexibility is both cognitive and behavioral. It is the ability to “shift” or change plans when something unexpected happens, someone introduces a different perspective or has a new plan.
10. Metacognition/self-awareness (self-directed attention): The ability to think about what we think, know, and do about a situation. It is the awareness of what you are good at and what is challenging for you.
11. Persistence/self-motivation/perseverance: The ability to continue toward reaching a goal when obstacles arise, such as distractions, unexpected challenges, and juggling multiple responsibilities.
12. Stress Tolerance/Resilience: This is a task of emotional regulation. It is the ability to tolerate uncomfortable, unexpected, often demanding situations.
Dawson and Guare, in their book Smart but Scattered, attest that when people identify their own executive function strengths and challenges, they can function better in all areas of life (p.19). I have observed this to be true in my personal experiences and within my clients.
EF cannot be cured; it can be helped by building awareness of your EF strengths and challenges and investing in learning strategies to make your unique brain work to achieve your goals.
As we close, I hope you are left more certain of what we are talking about when we refer to EF. Perhaps you can identify strengths and challenges within yourself or someone you know. If you're interested in beginning your journey, I would like to leave you with a possible first step: Dawson & Guare's Executive Skills Questionnaire is designed to tell you your EF strengths and needs; it can be located at www.guilford.com/ dawson7-forms; www.smartbutscatteredkids.com/esq/.
EF cannot be cured; it can be helped by building awareness of your EF strengths and challenges and investing in learning strategies to make your unique brain work to achieve your goals.
How Can I Help My Special Needs Child Leave School and Transition to the Adult World?
By Ryan F. Platt, MBA, ChFC, ChSNC, CFBS
The transition into adulthood for those with a disability can be quite a challenge for the entire family. The school years provide a structure for both the individual with a diagnosis and their parents, however, as school comes to a close, so does the structure for so many. It can seem like an abyss in which families are at a loss for direction and guidance.
The city of Chicago in Illinois recognizes this as an issue. They have started a new program called After 22. This program is a comprehensive transition initiative designed to connect individuals with postsecondary programs including flexible learning opportunities, leadership development, job skills training, special recreation, internships and job opportunities.
Rebecca Clark, president and CEO at Anixter Center, says, “After 22 is the missing piece that equalizes the pathway for young adults with developmental disabilities…This historic step bridges the gap, creating opportunities for students to secure meaningful work, and positively engage in, and contribute to their communities.”
Consider your options As a parent, it is imperative to explore options in your local area that may be similar to this After 22 program in Chicago. There are many organizations that provide assistance for individuals with a disability who are over the age of 22 including finding a job, volunteer work, and day-time activities. You will want to connect with your local Medicaid service provider. They will be able to provide you with a list of organizations that directly serve adults with disabilities in the area of community engagement.
Another option is to engage with a Special Needs Planner. These professionals work with many families like yours and often can refer you to companies that serve adults with disabilities. An experienced Planner will not only help you build a proper strategy to provide a lifetime of support for your child, whether you are alive or not, but they should also connect you to organizations that can help your adult child navigate adult life.
Adult life requires many decisions, including daily activities, socialization, transportation, medical needs, and housing/ living arrangements. All these areas of adult life require time and energy to think through and develop a strategy for, and
they also have a cost. Parents will need to devise a plan with all these elements included. Along with a plan, parents need to develop a “Support Team” for their loved one to ensure the plan continues after the parents can no longer spearhead the plan or are no longer alive. Your Special Needs Planner is typically the person who can lead the Support Team and ensure your plan carries on!
References
Disability Scoop. New IDD Transition Program Takes Shape. https://www. disabilityscoop.com/2022/02/01/new-idd-transition-program-takesshape/29684/
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.
