TIPS FOR EXPANDING THE DIET FROM AN AUTISM DIETITIAN
UnlockingSpeech andLanguage BREAKING DOWN BARRIERS CARRIE CARIELLO:
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
8 HANDLING SPECIAL EDUCATION IEP DISAGREEMENTS LIKE A PRO
Devon Rios
Learn how legal representation can support a child's education and how to handle a violation.
EXCEPTIONAL SPOTLIGHT A SPECIAL NEEDS PARENT'S POWERFUL PROMISE FOR CHANGE IN THE NEURODIVERSE COMMUNITY
Haiku Haughton
Meet Guy Stephens, a father who made meaningful change when he realized his neurodivergent son was punished with restraint and seclusion at school.
18 EXCEPTIONAL BOOKS CORKY THE QUIRKY COW AND THE CUCKOO CONCERT
Lavelle Carlson
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.
OUR COVER STORIES
TRAFFIC SIGNS: STEERING THROUGH LIFE’S SPECIAL MOMENTS WITH AUTISM
Carrie Cariello
Enjoy this sentimental piece written by a mother of five as she watches her autistic adult son progress from codependency to independence.
WORKPLACE ACCOMMODATIONS: WHEN DO YOU DISCLOSE A DISABILITY TO YOUR EMPLOYER?
Jagmeet Kaur Sangha, BCBA
Identify how a disability diagnosis could affect your job and how much to share with your employer when requesting disability accommodations.
19 TOP THREE RECOMMENDATIONS FROM AN AUTISM DIETITIAN FOR EXPANDING THE DIET
Brittyn Coleman, MS, RDN/LD
Consider these tips from a dietitian designed to empower you and your child on the path to nourishment.
42 KATE MAKES IT GREAT! NAVIGATING TRANSITIONS WITH LOVED ONES DIAGNOSED WITH SPECIAL NEEDS
Kate C. Wilde
Discover ways to reduce stress by preparing for future transitions between places, activities, and routines.
22 ADDRESSING THE LONELINESS OF CAREGIVERS SUPPORTING CHILDREN WITH SPECIAL NEEDS
Zachary Ginder, PsyD, MSW Create changes in your life to reduce the effects of loneliness and impress the importance of social bonds.
27 EXCEPTIONAL BOOKS 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 evidencebased practices.
28 AN EXCEPTIONAL STUDENT’S HEARTFELT LETTER TO THEIR TEACHER
Karen Kaplan, MS
Meet students who speak up to teachers about the nonobvious challenges faced at school.
32 TAKING THE GUESSWORK OUT OF TRAVEL WHEN DISABILITY ACCOMMODATIONS ARE NEEDED
Cindy Schaefer, MDiv, MA
Learn about the global efforts to enhance accessibility in travel for everyone.
36 THE VALUE OF CREATING AN INCLUSIVE CLASSROOM
Connie Persike, MS, CCC/SLP
Consider how warmly greeting students before class can improve their comfort, engagement, and trust.
40 EXCEPTIONAL ADVICE FROM MESHELL HELPING PEOPLE WITH SPECIAL NEEDS COPE WITH GRIEF AND LOSS
Meshell Baylor, MHS
Learn techniques to ease into a therapeutic dialogue with someone who may not know how to process losing a special person in their life.
44 NINE TIPS FOR UNLOCKING SPEECH AND LANGUAGE SKILLS FOR CHILDREN WITH AUTISM
Karen Kaplan, MS
Find out how language skills can continually be improved and supported while waiting for professional services.
46 FEARLESSLY PURSUING THE DREAM FOR FREEDOM AND INDEPENDENCE WITH AUTISM
Reginia Williams
A mother shares her gratitude for her supportive family as she and her daughter navigate the world together.
50 NATURE NOTES IT’S ABOUT THE PROCESS, NOT THE PRODUCT: AN INTERVIEW WITH TWINS
Amy Wagenfeld, PhD, OTR/L, SCEM, EDAC, FAOTA
Draw inspiration for outdoor enrichment from two young boys as they enjoy creative outlets in their backyard.
54 DOS AND DON’TS FOR HEALTHCARE PROFESSIONALS IN THE SPECIAL NEEDS COMMUNITY
Diana Romeo
Improve your next doctor visit by implementing suggestions for preappointment preparations and ways to spread awareness.
58 EXCEPTIONAL SPOTLIGHT DYNAMIC NON-SPEAKING AUTISTIC WOMAN TELLS FAMILIES NEVER TO LOSE HOPE
Haiku Haughton
Meet Siri Chettipally, a non-speaking autistic individual, as she shares thoughts on communication challenges, schooling during the pandemic, and future goals.
60 SAFETY GOALS WITH NICOLE SAFEGUARDING VULNERABLE CHILDREN WITH DISABILITIES AND AUTISM
Nicole Moehring
Learn how a lack of sexual and abuse education can put children at a higher risk of victimization, as they may be unable to notice the signs of abuse.
62 SEVEN WAYS TO PREPARE A SPECIAL NEEDS CHILD FOR A NEW SCHOOL YEAR
Carol Tatom, BA.HSE, CHW
Consider these simple ways of guiding a child back to school after settling into summer routines.
Learn how to work with a child’s occupational therapist to share knowledge and discover ways to enrich the child’s life.
66 AUTISTICS ARE NOT VILLAINS: EXPLORING THE “WHY” IN BEHAVIORS
Carol Weinman, Esq., CAS
A criminal lawyer who represents autistic clients explains how social preconceptions mixed with neurodivergence can lead to risky situations.
70 AN INTERVIEW WITH EXCEPTIONAL PARENT AND MIRACLE PROJECT FOUNDER ELAINE HALL
Ron Sandison, MDiv
Gain insight into how one woman’s appreciative attitude and creativity guided her parenting journey with her autistic son, and her life coach and advocate endeavors.
76 A FAMILY'S DREAM OF INDEPENDENCE FOR SPECIAL NEEDS DAUGHTER COMES TRUE
Cynthia C. Adams RN, MSN, EdD
Follow a mother as she reminisces about her daughter’s growth, admiring how the correct supports helped her develop into an accomplished, independent woman.
78 ALL THINGS OT HOW DO YOU START BUILDING INTEROCEPTIVE AWARENESS?
Laura A. Ryan, OT, OTR, OTD
Learn about interoception, the eight sensory systems, and how to teach children to recognize its effects on their bodies.
80 UNDERSTANDING AUTISM MOVIE SHINES A VALUABLE LIGHT ON NEURODIVERSITY
Ron Sandison, MDiv
Discover what Hollywood director and producer Scott Steindorff hopes his film will accomplish in terms of advocacy and how his own experiences with neurodiversity influenced its creation.
86 FINANCIAL FOCUS HOW DO I SET UP AND BEST UTILIZE AN ABLE ACCOUNT?
Ryan F. Platt, MBA, ChFC, ChSNC, CFBS
A financial planner explains how understanding the setup and usage of ABLE accounts is crucial for families of people with disabilities.
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
Exceptional Needs Today is published quarterly and distributed digitally by Lone Heron Publishing.
Disclaimer: Advertised businesses and products are not endorsed or guaranteed by Exceptional Needs Today, it’s writers or employees. Always follow medical advice from your physician.
From the Editor’s Desk
BREAKING DOWN BARRIERS
The topic of bias, both implicit and explicit, has been weighing especially heavily on me recently. While sexuality and race biases have reportedly declined over the past 14 years, disability bias statistics have barely budged, according to experimental psychologist Tessa Charlesworth, PhD. Even more unsettling, the study indicates that reaching neutrality, or zero bias, could take more than 200 years.
At first, I was very discouraged by this reveal. So many questions swirled through my mind. Will it take 200 years before caregivers feel seen and special needs families don’t feel excluded? How long will it be before people recognize that we all deserve loving friendships, support, and opportunities, no matter our differences?
I thought more about what this study reveals about today's special needs community. While I witness (and experience) closed-mindedness and hidden prejudices, I remain optimistic that our positive actions will determine the change we want to see. When I participate in conferences and partner with exceptional needs groups, I am motivated by the power of their constructive energies. When I brainstorm article ideas with our incredible community of writers comprised of passionate advocates, I am convinced we can eliminate these barriers TOGETHER.
Carrie Cariello is on my list of inspiring advocates. A phenomenal writer, Carrie openly shares her life with five kids (including her 19-year-old son with autism) in her weekly written blog, videos, and top-selling books. Like many in our diverse community, Carrie is generous with her time and willing to go the extra mile to unite. You don’t want to miss her moving piece, Traffic Signs: Steering Through Life’s Special Moments with Autism, as Carrie shares an emotional glimpse into the gradual growth from codependence to independence.
Another catalyst for change is Guy Stephens, Founder and Executive Director of The Alliance Against Seclusion and Restraint. A dedicated father, Guy stepped up to make meaningful change when his neurodivergent son was punished with restraint and seclusion at school. He is highlighted in our newest column to celebrate the diversity and unique talents that make our community extraordinary, Exceptional Spotlight. You
don’t want to miss A Special Needs Parent's Powerful Promise for Change in the Neurodiverse Community by Haiku Haughton.
I was introduced to the next phenomenal self-advocate more than a decade ago, and I continue to be impressed by her ability to break down barriers. Originally featured on the cover of Exceptional Needs Today magazine several years ago, we are excited for you to learn the latest news about Siri Chettipally. A non-speaking autistic, Siri shares her thoughts about communication challenges, schooling during a pandemic, and her future goals in Dynamic Non-Speaking Autistic Woman Tells Families Never to Lose Hope.
We are also proud to share professional guidance from autism expert, world-renowned speaker, consultant, trainer, author, and parent Carol Weinman, Esq., CAS. Be sure to read, Autistics Are Not Villains: Exploring The “Why” In Behaviors as Carol explains how social preconceptions mixed with neurodivergence can lead to risky situations.
This issue contains more than 25 articles, including content on navigating school transitions, the subtle strategy of greetings in a special needs classroom, ways to address caregiver loneliness, safeguarding vulnerable children, managing workplace accommodations, expanding food preferences, and so much more.
As always, we extend our heartfelt gratitude to our contributors, advertisers, and subscribers. You are the pillars of our community and the reason for our magazine's success. Your support and involvement are invaluable as we strive to bring awareness, acceptance, and inclusion to the forefront. Together, we can make a difference.
Handling Special Education IEP Disagreements Like a Pro
By Devon Rios
Navigating the educational landscape can be daunting for any parent, but the challenges can feel particularly overwhelming when your child requires an Individualized Education Program (IEP). One cornerstone of the IEP process is parent participation and consent to the IEP.
Over the course of an educational career, chances are that, at some point, there will be disagreement between parents and the school team regarding what a child may need to make appropriate progress. Below, we review some common IEP disputes and ways to keep your child’s needs at the center of any solutions.
What are the common special education disputes parents may encounter in the IEP process?
• Eligibility. Parents and the school team might disagree on whether or not a student should have access to an IEP. This could mean the school team thinks the students’ needs can be addressed with accommodations only and do not require specialized support and instruction under an IEP.
• Procedural. The school district isn’t following the legally required process—this includes issues like not allowing parents to participate in IEP meetings, not honoring legally required timelines, or not following the student’s IEP. Sometimes procedural violations are considered merely technical (think an assessment report being two days past due or an IEP meeting being one day late). However, when violations of the technical rules start to impact your child’s progress or your meaningful participation in the process, these technical errors become significant.
• Assessments. This is where the special education assessments that provide the foundation for your child’s
education are inaccurate and perhaps even incomplete, making it impossible for the school team to develop an appropriate IEP.
• Services and placement. This is the most common dispute in which parents and school officials disagree about services such as speech, occupational therapy, or behavioral support or what program will meet the student’s needs while ensuring the student is in general education to the maximum extent possible.
• Personalities. This is what I like to call “adult problems.” Examples include a teacher whose communication is lackluster. Perhaps the provider is doing things technically correctly but has a poor attitude or lacks rapport-building skills. Sometimes, you genuinely just don’t gel with a teacher or provider. While these types of disputes are real, they are usually not legally actionable, so we won’t focus on these. However, it is essential to separate personality problems from problems that might impact a child to be effective.
What do I do if I dispute my child’s IEP?
• Make sure your disagreement or concern is clearly documented. This could mean the IEP team has discussed the issue, you have requested a different service or program, and the IEP reflects the rejection of the request. It could mean you have made a written request for an assessment, which has been rejected in writing. It might mean you have sent an email regarding concerns that your child’s IEP has not been implemented and the problem persists. Regardless of the kind of dispute, your concern is laid out to the IEP team and remains unresolved. You have exhausted the first level of dispute resolution locally
with the providers, teachers, and administrators, and the problem remains. Do not skip this step—demonstrating that you have done everything possible to resolve the concern locally is critical.
• Familiarize yourself with the dispute resolution options available. Your school system may have an alternative dispute resolution process where you can meet with district decision-makers to fix the problem. There may be a state compliance process to address procedural violations. If you have disputes regarding services and placement, consider a formal special education due process complaint and consult a special education attorney. Knowing the “pros and cons” of each dispute resolution option is critical and should be evaluated objectively. One crucial question is, will this process resolve my concern and provide the solution I seek?
What is a special education due process complaint?
Under a federal law known as the Individuals with Disabilities Education Act (IDEA), a parent may file what is called a “due process complaint” regarding any dispute with the school regarding violations of students' right to a Free and Appropriate Public Education (FAPE). These complaints are filed with a state agency and can include mediation to resolve the dispute if both parents and the school agree to participate. If mediation is unsuccessful or not utilized, the parent and school will go before an administrative hearing officer who will hear all the facts and decide whether there was a legal violation and, if so, what the remedy will be.
While some states may allow for a longer timeline, federal law requires that a parent file a due process complaint within two years of the alleged violation. This means you should take action when you know, or should have known, there is a violation that denied your child their right to an education. This is what is legally known as the “statute of limitations,” and it puts time limits on how far back you can go in time regarding violations. Practically speaking, if you believe your child is being denied an education, take prompt action. Children change, and even waiting two years could mean their needs are different, and the remedy you want to fix the problem could no longer be relevant.
What are some practical tips for resolving special education disputes?
• Controlling emotions is key. While each child has unique circumstances and needs, parents are at the point of
having a dispute with the IEP team, and all have one thing in common: it feels personal, emotional, and most likely exhausting. You must take care of yourself so you can be as objective as possible and keep your child’s needs at the center of discussions. You don’t have to do it alone. The best way to resolve a dispute is to proactively build your support team and sounding board to have what you need when issues arise.
• You are likely going to need Independent Educational Evaluations (IEEs). There is a major difference between knowing something is wrong with an educational program and knowing what the potential solutions are. IEEs are outside opinions from qualified experts regarding a child’s unique needs and what educational programming should look like. These experts give the guidance you need when there is disagreement with the school's expertise and can provide a roadmap from a third party regarding what might resolve the concern. In an IEP dispute, these IEEs are all but required since the parent must demonstrate why the requested change is needed. Do yourself a favor, familiarize yourself with the IEE process and local experts, and build up this team early. That expertise can save you time and energy and get the desired result.
• Get advice and support regarding likely outcomes in due process, remedies, and what to expect. Legal counsel and guidance in this process can help you objectively evaluate the strength of your facts and the likelihood of obtaining the outcome you seek. Having a relationship with legal counsel can help you avoid disputes that might be unreasonable or unnecessary. If legal action is necessary, having strong legal counsel can help ensure the issue you are pursuing is worth “dying on the hill over,” as I say to many clients. What this means is to make sure the issue is worth spending the time, energy, and resources on so that even if you don’t obtain the exact outcome you seek, as a parent, you can feel assured you did all you could to address the problem head-on.
While advocating for your child’s needs can be complex and challenging, understanding the process and your options can empower you to navigate this journey with confidence and clarity. Remember that you are not alone on this path, and seeking support when the road is bumpy can create inclusive and supportive learning environments for your child and possibly others.
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.
devonriosapc.com
unspokenrulesiep.com
Traffic Signs:
Steering THROUGH Life’s Special Moments with Autism
By Carrie Cariello
The restaurant is busy for a Monday. At nearby tables people laugh over their lunch. Perhaps it’s the sunny afternoon, a harbinger to the long-awaited spring in New Hampshire that’s put everyone in such good spirits.
The server sets the plate down in front of him. He looks at it, then back at her.
“This is not…what I ordered.”
I look down at the pizza smothered in mushrooms. He hates mushrooms. The only topping he likes is pepperoni.
I open my mouth and start to speak. I think better of it. I lean back in my chair and fold my hands carefully in my lap. I am waiting for the storm.
Untethering.
A word wrapped around a stop sign.
My son, Jack.
For 19 years, autism connected us in complicated ways.
For as long as I can remember, I fought for him. I spoke for him. I hoped for him.
So often, I wondered how this story would turn out.
I long for it to sit still and dusty on a shelf somewhere—its power lost after so many have lived a similar tale.
How long will I look over my shoulder? How long will I wait for the chaos to descend?
Autism.
How badly I want to know the ending.
Now, across the table, he shifts slightly in his seat. It’s as though time has stopped altogether. I can practically see the other people at their tables watching us, their forks suspended in mid-air. Perhaps I am imagining this.
I read somewhere that it’s easy to trap bees inside a jar. This is because they don’t look up at the sky. They focus on the bottom and the walls.
Once upon a time, Jack and I were the bees scuttling across the glass bottom. We never looked up or considered a different way.
Autism created two versions inside of him.
Physical age. Emotional heart.
Now, slowly, I begin to disentangle us.
Like the sun making a long, unhurried arc across the sky, so too is the disentanglement of mother and son.
He isn’t my friend.
He’s not my companion.
He is my son.
Untethering, it seems, is a triangle of sorts. There are three corners: physical, emotional, and interpretive.
At first, I stop managing his medication. I introduce him to the patient portal through the doctor’s website. Together at the kitchen counter one wintry afternoon, we practice requesting refills on my laptop.
I tell him to stop waiting for me whenever I leave the house—his tall silhouette standing in the doorway whenever I pull in the garage.
Because if untethering is wrapped around a stop sign, then codependence is the sly lean into the red-and-white yield. I am determined to keep us both upright.
I stop calling him Big Guy.
I stop suggesting what clothes he should wear.
I stop ordering for him in restaurants.
I stop monitoring how much soda he drinks.
Tiny changes. Perhaps meaningless in the face of life with a diagnosed child.
Now, here in this restaurant, I move to the third corner. Interpreting.
For so long, I interpreted boy to world and world to boy. Now, it is time to slide out of this space. It is time for boys and the world to try to figure each other out.
He looks back at the server. He agrees to try the pizza. If he doesn’t like it, he’ll order dessert instead. I smile widely at him.
How will this story turn out? I have no idea.
I can only tell you what is, as opposed to what will be.
It is the story of brotherhood, motherhood, changed minds, and beating hearts.
It is the story of the wind at our backs and the sun on our faces.
The story of a first bite of lunch on a spring-like afternoon.
The ordinary, dazzling story of the metamorphosis of boy to man.
It’s easy to assume the story begins and ends here.
I don’t know where it began.
I don’t know where it ends.
But I believe the middle of it happened in a garage with my tall boy’s silhouette making shadows on the wall.
“Mom. I always come to see if you have groceries to carry inside.”
In this life we call ours, we have only moments.
Carrie Cariello is the author of What Color Is Monday: How Autism Changed One Family for the Better, Someone I’m With Has Autism, and Half My Sky: Autism, Marriage, and the Messiness That is Building a Family. Carrie contributes to the Huffington Post, TODAY Parents, the TODAY Show, Parents.com, Love What Matters, and Grown and Flown. She has been interviewed by NBC Nightly News and has given a TEDx talk. She speaks regularly about autism, marriage, and motherhood and writes a weekly blog at carriecariello.com. One of her essays, “I Know What Causes Autism,” was featured as one of the Huffington Post’s best, and her piece, “I Know Why He Has Autism,” was named one of the top blog posts by the TODAY Show. �� carriecariello.com
EXCEPTIONAL SPOTLIGHT A Special Needs Parent's Powerful Promise for Change in the Neurodiverse Community
By Haiku Haughton
Let us embark on a journey into the special needs community, where we meet with someone making waves. This parent's involvement began with their neurodivergent child's challenges, sparking a committed promise for change. I am proud to welcome Guy Stephens, founder of the Alliance Against Seclusion and Restraint, a non-profit organization that advocates for legislative transformations, emphasizing the need for inclusive education and challenging harmful disciplinary methods. Join this impactful journey toward a more inclusive world for all.
What inspired you to become involved in the special needs community, and how has it shaped your journey?
I initially became involved in the special needs community because I have a neurodivergent son with an Individual Education Program (IEP) requiring special education services. However, my involvement in the community increased significantly after my son experienced inappropriate physical restraint, seclusion, and trauma at a public school in Maryland. I never knew physical restraint and seclusion were things that might be done to a child until it happened to my son.
I quickly learned that children with disabilities are physically restrained and secluded in schools more than anyone else. After experiencing physical restraint and seclusion in the Fall of 2018, my son didn't feel safe returning to school, and we didn't feel safe sending him back. It was then that I made a simple promise to my son. I told him I would do anything in my power to make sure what was done to him did not happen again.
My promise led to me conducting a tremendous amount of research on the topic of restraint and seclusion in schools. That research inspired me to start the Alliance Against Seclusion and Restraint, a non-profit on a mission to inform changes in policy and practice to reduce and eliminate the use of punitive discipline and outdated behavioral management approaches and end the school-to-prison pipeline.
Can you share a significant accomplishment or moment that has positively impacted the community?
The Alliance Against Seclusion and Restraint has been advocating for changes in laws and policies related to reducing the use of restraint and eliminating the use of seclusion in
schools. In 2022, I collaborated with many other dedicated advocates to propose and support a bill aiming to prohibit the use of seclusion in all public schools in the state of Maryland, my home state. Achieving the passage of this law passed in Maryland was a huge step in the right direction. Today, we continue working in other states to promote better laws and policies and to support federal legislation.
How do you envision creating a more inclusive and supportive environment for individuals with different abilities?
To be inclusive, we need to stop all the exclusionary discipline. Children with disabilities, black and brown children, and children with a history of trauma are far more likely to be restrained, secluded, suspended, expelled, spanked, paddled, and pushed down the school-to-prison pipeline. These same children are also far more likely to be misunderstood in the name of behavior.
Much of the behavior management in schools is not only not working but is also harming our children with exceptional needs. We need to change what we are doing and how we are responding to behaviors in schools. Operant conditioning, rewards, and consequences are not the answer.
Much of the behavior management in schools is not only not working but also harming our children with exceptional needs.
To create more inclusive environments, we must move to trauma-informed, neuroscience-aligned, relationship-driven, neurodiversity-affirming, and collaborative approaches to supporting all children. We need to shift from a deficit mindset,
such as the medical model of disability, to a supportive mindset, such as the social model of disability.
There is a tremendous amount of work to be done, but I remain hopeful. Parents, advocates, self-advocates, and others are sharing their concerns and pushing for change. We really can make a difference. It reminds me of Margaret Mead's quote, "Never doubt that a small group of thoughtful, committed citizens can change the world; indeed, it's the only thing that ever has."
Who or what inspires you daily, and how does it influence your work within the special needs community?
My children have been the inspiration for my work. What happened to my son was undoubtedly the catalyst for me to become involved in the special needs community, but my hope in all our children creating a better world is a daily driver for my work. I've always loved this quote from Maya Angelou, "Do the best you can until you know better. Then, when you know better, do better." We can do better; our children are the key to a better tomorrow.
What advice would you give others who want to impact the lives of people with special needs positively?
Take action! If you see something in the world that needs to change, do what you can to change it. We have far more power than we think. I'm just a dad, a dad who stood up for change, and I have been able to make some meaningful progress. You can make a difference, and the more of us who stand up and do the work to create change, the more impact we will have on creating a better and more inclusive world for all.
As we wrap up, Guy's journey shows how a strong commitment can make a real difference. Starting with his child's challenges, Guy founded the Alliance Against Seclusion and Restraint, pushing for better laws and inclusive education. Looking forward, his story reminds us that when people come together, positive changes happen. This journey is proof that anyone can contribute to making our world more caring and inclusive.
Guy Stephens lives in Southern Maryland with his wife and two children. He is the Founder and Executive Director of The Alliance Against Seclusion and Restraint (AASR), a nonprofit he started in 2019. AASR is a community of over 25,000 parents, self-advocates, teachers, school administrators, paraprofessionals, attorneys, related service providers, and others working together to influence change in supporting children whose behaviors are often misunderstood. He has presented at conferences and events across North America and guest lectures for undergraduate and graduate courses as a national expert on the issue of restraint and seclusion.
Haiku Haughton is a University of Central Florida student obtaining a Bachelor of Arts degree in Writing & Rhetoric and a Certificate in Editing and Publishing. Born in Montego Bay, Jamaica, with an English teacher for a mother, Haiku was immersed in writing at a young age, and that same immersion continues today. Whenever his eyes aren’t plastered to the monitor of his desktop, Haiku directs his time towards his other passions, which include archery, art design/analysis, nature walks, and reading books on various topics. Haiku serves Exceptional Needs Today as an Editorial Intern.
By Jagmeet Kaur Sangha, BCBA
Awareness and support of the full range of disabilities and learning differences have been increasing recently in the working world. However, it may still be a difficult decision to know when and if you should disclose your disability at work.
While some disabilities are visible, like using a wheelchair or hearing aids, others are invisible, like mental health conditions or chronic illnesses. Neurodivergents, such as those with autism, attention deficit hyperactivity disorder (ADHD), dyslexia, and other neurological differences, have unique learning styles and strengths, but their needs and challenges may not be clearly visible to others. As such, many struggle to decide whether it’s a good idea to tell their employers about their condition, fearing misunderstanding or stigma.
Before deciding, it’s helpful to assess any barriers to disclosure you may have and the potential benefits. Considering these factors can assist you in making an informed choice and can ultimately lead to more successful employment.
Barriers to disclosure
Despite the growing celebration of authenticity and inclusivity, there is still great stigma and misunderstanding surrounding disabilities within the workplace. The most common fears are discrimination or being treated differently, which can make it challenging for people to open up about their disabilities or the necessary accommodations they require to be more successful.
While these concerns are legitimate and worth considering, there are many ways to alleviate your worries. For instance, educating yourself about federal disability rights, such as the Americans with Disability Act (ADA), is a great place to begin understanding the responsibilities of both employees and employers under the law.
Benefits of disclosure
The decision to disclose disability-related information to an employer is always on the employee; however, the timing of your disclosure is a key factor. Sharing your disability with your
employers allows them to provide necessary accommodations to support you in your roles before any performance issues arise. If you find yourself struggling with tasks, not meeting deadlines, or needing help with your expected job duties, it is best to disclose and request appropriate accommodation before your job performance begins to suffer or decline.
Sharing your disability with your employers allows them to provide necessary accommodations to support you in your roles before any performance issues arise.
According to the Equal Employment Opportunity Commission (EEOC), you must request accommodations before performance issues become apparent; once a performance issue is documented, employers do not need to revoke any disciplinary actions or decisions to terminate your employment. Even if you request accommodation at this juncture, employers “may refuse the request for reasonable accommodation and proceed with the termination because an employer is not required to excuse performance problems that occurred prior to the accommodation request.”
Unfortunately, some individuals may not know or acknowledge that they are not meeting job expectations or have performance concerns. Using measurable and objective goals and maintaining open communication with your direct superiors can help prevent you from getting into trouble in these areas.
What to share (and how to share it)
Disability-related information is always confidential. Supervisors should be provided with minimal details regarding an employee's medical requirements; instead, they should concentrate on what is essential to assist them in fulfilling their job responsibilities.
You might feel compelled to divulge disability-related details without explicitly seeking accommodations, but this can lead to potential confusion and challenges for your supervisors in providing adequate support. It’s best to frame the discussion around what will be most helpful for you, providing specific and actionable requests for accommodation. For example, you may share, “I noticed I struggle to follow along during team meetings. I have a need that requires me to have visuals
or notes available during these meetings. Would it be okay if those are provided for me, or if I can take notes?”
It is helpful to avoid jargon when explaining your needs or disability. As many people may not be fully aware of the different types of disabilities or what are considered best practices to create workable environments around those needs, it’s best to keep your explanations simple without attempting to educate well-meaning superiors on the intricacies of your condition. Being clear about exactly what you need is paramount. For example, “It is most helpful for me to have a workspace with limited distraction while I am working on focused projects.”
If you choose to discuss your disability with your employer, it is important for you to be well-versed in your own needs as well as how your skills can benefit your employer, as this is what will help you to build systems of communication that can help you be successful. For instance, in a job interview, you might mention your role as a self-advocate within the autistic
EXCEPTIONAL EMPLOYMENT
community, emphasizing how community engagement has amplified your skills and contributed to the development of others. This approach showcases your unique abilities and strengths while embracing diversity.
Self-awareness and workplace responsibilities
My experience has been that person-centered solutions are necessary when creating opportunities for everyone to be successful. These solutions require recognizing both an individual's unique talents and any areas of support needed to help them thrive in workplace settings. By becoming more aware of your limitations and abilities, you can recognize when and where you might need support. This information allows
for a collaborative approach with your supervisors to design workplaces and workloads that can better meet your needs as an employee.
Disability needs must begin to be included in workplace diversity and inclusion initiatives. Employers are responsible for creating an inclusive workplace where individuals feel comfortable disclosing their disabilities without fear of discrimination. This includes implementing policies and procedures that protect the rights of employees with disabilities and providing training to staff on diversity and inclusion. If your workplace is looking to create neuro-inclusive workspaces, reach out for a consultation!
Jagmeet Kaur Sangha, BCBA is a Board-Certified Behavior Analyst. For over a decade, Jagmeet has worked in homes and schools, providing applied behavior analysis (ABA) services to children, supporting educators, and offering parent training consultations to caregivers. She is invested in educating the community and helping families and individuals receive top-quality behavior intervention services. Jagmeet uses the science of ABA to promote well-being and advance individuals, organizations, and society through connection, education, and behavior science. Her organization, Behavior Pivot Consulting, works with employees and employers to create neuro-inclusive communities within the workplace by focusing on identifying and building on individual strengths, promoting self-advocacy, and offering person-centered solutions related to workplace wellness.
�� www.behaviorpivot.com ✉ info@behaviorpivot.com
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!
CORKY THE QUIRKY COW AND THE CUCKOO CONCERT
By Lavelle Carlson
Corky the Quirky Cow and the Cuckoo Concert by Lavelle Carlson is an “udderly hilarious” tale in the genre of Shel Silverstein. Corky is loved for her quirkiness as she entertains all with her skill of singing the sounds of all animals. She is the perfect “Speech Therapist cow” who teaches the other animals her skills so they can entertain all the neighbors. What happens when the neighbors become bored? Well, Corky goes into the woods and meets someone who can teach her a new skill. Now, what is that skill that will surprise Farmer Ken and all the neighbors? This book is full of humor and, at the same time, has so many speech and language skills that speech therapists, teachers, and parents can use.
Lavelle Carlson was born in Texas. She began her university studies in Houston but did not finish as she and her husband made their first move to Arkansas. From there, she moved to Oklahoma, then England and Norway for ten years. Following her return from overseas, she received her Master’s in the field of speech/language pathology. During her career, she worked with a variety of special children. These children, as well as her grandchildren, have been her inspiration for writing books. Her storybooks are written to entertain and teach early reading, speech, and language concepts. She has had several award-winning books. She also continues to provide quality teaching materials, coloring pages, activities, downloadable storybooks, and watermark-free photos she has taken over her 50 years of travel worldwide. She has a blog dedicated to helping teachers and speech-language pathologists at www.slpstorytellers.com
�� slpstorytellers.com
INSTAGRAM @slp_storyteller
SQUARE-FACEBOOK www.facebook.com/SLPStorytellers
TOP THREE RECOMMENDATIONS FROM AN AUTISM DIETITIAN FOR EXPANDING THE DIET
By Brittyn Coleman, MS, RDN/LD
You may be surprised to learn that up to 90% of autistic children also have sensory processing challenges, which can affect all areas of their lives, especially eating. Sensory sensitivities and aversions can often limit food preferences, making it difficult to ensure a balanced and nutritious diet. It’s important to expand your child's diet to not only meet their nutritional needs but also respect their unique sensory needs.
As an autism dietitian, I’d love to teach you practical strategies for diversifying food choices. These strategies emphasize the integration of sensory-friendly practices and the gradual introduction of new foods. Whether you're struggling to incorporate more variety into your child's meals or seeking to better understand their sensory preferences, these tips are designed to empower you and your child on the path to a nourishing diet.
1. Understand your child’s food sensory profile
Eating is one of the most sensory-rich activities that we experience. When we eat, all our sensory systems fire—our taste, smell, touch, sight, and hearing. We taste the food, we smell the aroma, we feel the texture, we see the color and presentation, and we hear ourselves or others chewing. This combination of sensory experiences can be really overwhelming for many autistic children or those with sensory processing disorders. There may be certain sensory experiences that some children prefer while others may completely avoid.
Take a moment to think through your child’s preferred and safe foods—do they have preferences on taste, texture, color, or temperature? If so, take note! You can even write down the characteristics of each food on paper to make it clearer. Your child’s food sensory preferences are their food sensory profile. This profile can help us understand new foods that might be more likely to be accepted! So, if your child prefers beige, crunchy, and room temperature foods almost exclusively, that helps us realize starting with new foods that share this profile is more likely to feel familiar and less overstimulating.
2. Introduce foods gradually and consistently
Many believe the only food success is a child taking a bite of a new food or eating it right away. This couldn’t be further from the truth, and this kind of thinking will actually set you up for failure. There are many steps that need to be taken before a child takes a bite of food to feel comfortable and confident! We can start by talking about a food, watching a YouTube video of it being prepared, having it on a separate plate at the table, involving the child in the preparation of it, and other sensory experiences like touching it, smelling it, licking it, and so on. It’s important to follow the child’s lead and their comfort level with each step as we want to make sure we respect their sensory needs and aversions and create positive experiences with the food, even if that doesn’t mean that they take a bite or try the food for a while. Consistency is key to helping them learn to recognize new foods and build more comfort around foods that are different from the ones they currently eat.
3. Create a sensory-friendly mealtime environment
I like to think of our sensory threshold as a bucket. Each sensory experience we have throughout the day is a cup of water we pour in. The moment we overfill the bucket is when we start to see overstimulation and coping behaviors. We encourage creating a mealtime environment that is as calm and the least overstimulating as possible to allow for more ability to explore new sensory experiences from food. Loud sounds, big smells, stressful conversations, and distractions at mealtime can all overfill a sensory bucket. Creating a relaxing and calm mealtime environment can really lay the foundation for a more successful meal and exploration of new foods.
At the end of the day, never be afraid to ask for help from an expert! Many dietitians, speech therapists, and occupational therapists specialize in feeding therapy for autistic children. Finding the right fit for your needs will help you succeed in expanding your child’s diet. As we expand the diet, children can get more of the nutrients their bodies need to feel their best and thrive in school, therapies, and life.
Brittyn Coleman, MS, RDN/LD, 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 autism 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 her Nourishing Autism podcast. She's a leading figure in autism nutrition, sharing educational content, practical tips, and fostering a supportive community for parents and professionals via Instagram, YouTube, and more.
All readers can use the code EXCEPTIONAL to receive 15% off their first month in the Nourishing Autism Collective to learn how to expand their child’s diet in a sensory-friendly way and help them get the nutrients they need to feel their best! �� autismdietitian.com
Membership: NourishingAutism.co �� Free Guide for Parents: autismdietitian.ck.page/guide
Addressing the Loneliness of Caregivers Supporting Children with Special Needs
By Zachary Ginder, PsyD, MSW
In late March 2020, Linda, a parent of a child with special needs, found her world dramatically changed. Her threeyear-old son had recently received a diagnosis and was in the queue for treatment services, and Linda was just starting to build a relationship with a neighborhood moms’ group.
"I finally had the answers I needed and the referral resources to help my son, but when the pandemic hit, everything changed."
After the pandemic shutdown, Linda found herself isolated, juggling household responsibilities, work, and caring for her son without the in-person services she had hoped to receive. As the months passed, her budding social network faded away, and her relationship with her spouse began to be strained. Within a few months, Linda had to reduce her work hours to balance caring for her son and began to experience feelings of loneliness and psychological distress.
"I felt like I was in over my head and didn't have anywhere to turn," she said.
Over time, Linda reached out to her family and a local support group for assistance. Slowly, she worked towards well-being by leveraging social support resources, which in turn helped her be more attentive and effective in her role as primary caregiver to her son.
Loneliness and isolation for caregivers
Although Linda's story is fictional, the themes are not uncommon for caregivers of children with special needs and highlight the importance of social support. In May 2023, the U.S. Surgeon General released an advisory on the epidemic of loneliness and isolation. By design, an advisory is reserved for situations deemed to be an urgent public health issue, thus illustrating the significance of the concern at that moment in time.
For many, this information from the U.S. Surgeon General came as no surprise. The world had just started recovering from the unfortunate chaos of a global pandemic. Among the numerous effects of stay-at-home orders and mandatory social distancing was an immediate change in how individuals connected with their network of friends, families, and support systems. While loneliness and a lack of social support have always been a concern for certain vulnerable populations, the pandemic created a window of opportunity for social relationships to deteriorate at a rapid pace, paired with higher-than-normal levels of stress, especially for caregivers.
The need for social connection
For humans, social connection and subsequent support isn't just a "nice to have" aspect of existence, it is a "must have" for optimal survival. Research suggests a strong relationship exists between the level of social connectivity a person possesses and various health and well-being factors. One of these factors is life expectancy. In short, the greater the level of
social support and the deeper the relationships one possesses, the less risk one has for mortality. In these terms, social support is something that everyone needs as a biological and psychological imperative. Fewer people possess it at the levels needed to thrive in today's world.
Caregivers of children with special needs are not immune from the effects of isolation and loneliness and may indeed be at an increased risk. Raising a child with special needs comes with a unique set of opportunities and challenges for caregivers. While caregiver stress often begins well before an official diagnosis, one parent described receiving their child's diagnosis of autism spectrum disorder (ASD) as having their "world turned upside down." The need for social support is absolutely critical in navigating the ongoing medical, behavioral, academic, and social challenges often associated with raising a child with special needs. Unfortunately, this type of safety net support is often lacking despite it being a primary element of effective coping.
Risk factors and opportunities
A recent Gallup poll found only 39% of U.S. adults felt emotionally connected to others, while approximately half of U.S. adults reported experiencing loneliness. There are also additional risk factors for certain groups that increase the likelihood of experiencing loneliness and isolation. Beyond circumstances such as level of companionship, household structure, and physical and mental health status, traditionally underrepresented populations, such as Hispanic and Black/ African Americans, the economically disadvantaged, and younger populations are at greater risk for loneliness and isolation.
It is well-established that caregivers of children with special needs are more prone to experiencing caregiver stress and subsequent psychological distress. Due to increased caregiving responsibilities, these caregivers are also more likely to be under-employed, incur greater medical and behavioral health costs, and, in turn, struggle economically to stay afloat. Relationship challenges within the home, with friends and others outside of the home due to stigma and lack of understanding are also more prevalent for caregivers of children with special needs.
It is important to recognize risk factors do not seal one's fate. Facts and figures are meant to be informative and move individuals toward thoughts and behaviors, promoting overall well-being. Within every challenge, there are opportunities to cultivate greater insight, understanding, and compassion. Caregivers of children with special needs are no exception and have been found to be incredibly resilient despite facing challenges typically greater than those of their peer caregivers. In addition to leveraging positive coping strategies and an optimistic mindset, social support is a key factor in a caregiver's ability to manage stress and other life challenges.
EMOTIONAL HEALTH
Taking action
Not all social support is helpful when it is offered and available. For example, a parent may have a wealth of informal support from extended family, but that may be a mismatch with the needed structural support from agencies or schools. Research suggests that for social support to be effective, it must match the expressed needs of the caregiver. Moreover, quantity does not always indicate the quality of the support, and not all social support will help caregivers move toward greater wellbeing. Caregivers often know exactly what they need and can articulate and specify what types of support would be most helpful. Unfortunately, the expressed need is not always met.
While not exhaustive, the following recommendations adapted from the U.S. Surgeon General's report may help caregivers start their journey toward accessing greater social support and well-being.
1. Understand the power of social bonds
Knowing the facts about quality social connections and how they benefit mental and physical health is a great first step. Remember, quantity does not equate to quality, and not all social support will be a perfect fit. This is perfectly normal, and just because it is offered does not oblige you to accept it. Work to prioritize the relationships with individuals, groups, and organizations that are most meaningful and fulfill an actual need.
2. Seek opportunities to help others
Caregivers of children with special needs are often strapped for time, but supporting others doesn't always require a lengthy time commitment and can be as simple as a supportive phone call. Activities to help others can lead to new connections, strengthen existing relationships, expand social networks, and provide a greater sense of purpose. It may also allow caregivers to "pay it forward" and help others who may be struggling with similar challenges.
3. Expand your circles
If caregivers are not finding fulfillment in their current social networks, it may be time to expand their horizons
and connect with new groups, networks, or spiritual organizations. Meeting people from diverse backgrounds can broaden perspectives and relationships. This may also help build social capital that can be relied upon to help oneself and others when needed.
4. Join groups with shared interests
Do you have a passion or particular interest? Participating in a hobby, fitness, religious, or community service group can provide a greater sense of belonging and meaning and cultivate a sense of purpose. This, in turn, can lead to what is called pro-social behavior, reduce stress, and increase the perceived sense of well-being.
5. Limit isolating activities
Our current digital world often encourages isolating activities that limit opportunities for social interaction, such as excessive social media scrolling, binge-watching television, online shopping, etc. If a caregiver is unsure whether their activities are isolating, try keeping a daily log of where their free time is spent for a week. If time online is not balanced with other activities, start by making microadjustments to reduce isolating activities.
6. Voice your needs
While acknowledging that speaking out, recognizing current struggles, and asking for help can be difficult, no one should suffer in silence. In certain circumstances, asking for help from others can strengthen relationships. If you are struggling, don't hesitate to reach out to loved ones, counselors, a support network, or a professional for support. If you notice loneliness or isolation causing increased difficulty in life function (socialization, work, caregiving, or home life), seek help from a licensed clinical provider as soon as possible. It is important not to wait to seek help when feeling overwhelmed. Early, proactive activities can help keep loneliness at bay. Your health matters and needs to take a prioritized place in your life.
7. Lead with kindness
Caregivers are often more than happy to extend kindness to others but may not extend that same level of kindness to themselves. In all interactions, strive to treat others and oneself with compassion and respect.
References
Baker, Bruce L., Laura Lee McIntyre, Jan Blacher, Keith Crnic, Craig Edelbrock, and Carolyn Low. "Pre-school children with and without developmental delay: Behaviour problems and parenting stress over time." Journal of intellectual disability research 47, no. 4-5 (2003): 217230.
Benson, Paul R. "The impact of child and family stressors on the selfrated health of mothers of children with autism spectrum disorder: Associations with depressed mood over a 12-year period." Autism 22, no. 4 (2018): 489-501.
Cidav, Zuleyha, Steven C. Marcus, and David S. Mandell. "Implications of
childhood autism for parental employment and earnings. "Pediatrics 129, no. 4 (2012): 617-623.
Cigna Corporation. The Loneliness Epidemic Persists: A PostPandemic Look at the State of Loneliness among U.S. Adults. 2021.
Gallup Inc., Meta. The State of Social Connections. Washington D.C.: Gallup Inc., 2022.
Gray, David E. "‘Everybody just freezes. Everybody is just embarrassed’: Felt and enacted stigma among parents of children with high-functioning autism. "Sociology of Health & Illness 24, no. 6 (2002): 734-749.
Hartley, Sigan L., Erin T. Barker, Marsha Mailick Seltzer, Frank Floyd, Jan Greenberg, Gael Orsmond, and Daniel Bolt. "The relative risk and timing of divorce in families of children with an autism spectrum disorder." Journal of Family Psychology 24, no. 4 (2010): 449.
Holt-Lunstad, Julianne, Timothy B. Smith, and J. Bradley Layton. "Social relationships and mortality risk: a meta-analytic review." PLoS Medicine 7, no. 7 (2010): e1000316.
Holt-Lunstad, Julianne. "Why social relationships are important for physical health: A systems approach to understanding and modifying risk and protection." Annual review of psychology 69 (2018): 437-458.
Hsu, Yu Chien, Shu Ling Tsai, Mei Hui Hsieh, Michael S. Jenks, Chang-Hsiung Tsai, and MinTao Hsu. "On my own: A qualitative phenomenological study of mothers of young children with autism spectrum disorder in Taiwan. "Journal of Applied Research in Intellectual Disabilities 30, no. 1 (2017): 147-156.
Kuracki, Kamil. “Satisfaction with the support received by parents of children with disabilities and the diversity of parental behaviour towards the child.” Interdisciplinary Context of Special Pedagogy 26 (2019): 191 - 215.
Lai, Wei Wei, and Tian Po S. Oei. "Coping in parents and caregivers of children with autism spectrum disorders (ASD): A review. "Review Journal of Autism and Developmental Disorders 1 (2014): 207-224.
Peer, Justin W., and Stephen B. Hillman. “Stress and Resilience for Parents of Children With Intellectual and Developmental Disabilities: A Review of Key Factors and Recommendations for Practitioners.” Journal of Policy and Practice in Intellectual Disabilities 11 (2014): 92-98.
U.S. Surgeon General’s Advisory on the Healing Effects of Social Connection and Community. Our Epidemic of Loneliness and Isolation. Washington, DC: U.S. Public Health Service, 2023.
Zachary Ginder, PsyD, MSW, has a lifelong passion for providing service to others, which includes 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.
�� autismassessment4ie.org
MEET ME WHERE I AM
NAVIGATING THE INTERSECTION OF AUTISM AND OCD
By Elizabeth Ives Field
At age ten, Samuel’s considerable intellectual gifts were complicated by autism, obsessive-compulsive disorder, and the extreme anxiety that accompanies both conditions. As a result, Sam developed several unique communication differences, as well as unwavering avoidance of any hint that adults were controlling him, and other challenging behaviors that disrupted harmony at home, school, and in the community.
This is a book about the “I” in IEP. Special education teams encounter some students, like Samuel, who can only survive in public schools with a highly individualized program. In addition to many common autism struggles, Sam contends with an invisible postmaster who steals many of his words, panic in response to asymmetrical touch, an unyielding inability to comply with adult directives, and a myriad of other issues.
The book is entirely true, as creative nonfiction must be. Told from the perspective of speech/language pathologist and autism consultant Elizabeth Ives Field, with input and editing from the now-adult Sam and his supportive parents, it weaves the story of their neurodivergent and neurotypical collaboration with the themes of highly individualized education, the consequences of anxiety, and the benefits of acceptance, trust, innovation, patience, and humor.
Elizabeth Ives Field, also known as Betsey, lives in Hudson, Massachusetts, presents at conferences, and writes books and articles on autism topics. She is the author of Building Communication and Independence for Children Across the Autism Spectrum: Strategies to Address Minimal Language, Echolalia, and Behavior (2021) London, Jessica Kingsley Publishers. Meet Me Where I Am: Navigating the Intersection of Autism and OCD is her second book, and she has nearly finished a third, Autism, Echolalia, and Sometimes, Blindness: A Practical Guide to Conventional Communication. She also writes a monthly newsletter about autism and communication on LinkedIn. For over 45 years, Betsey has provided speech/language therapy and communication/behavior consultation to autism families and educators to improve communication and interactions in schools and homes. She presents at national and regional conferences on topics of autism and communication. ✉ ElizabethField@autismfieldwork.com
AN EXCEPTIONAL STUDENT’S HEARTFELT LETTER TO THEIR TEACHER
By Karen Kaplan, MS
Dear Mrs. Smith,
My son, like many other students on the autism spectrum or with similar learning differences, wants you to know why he does not want to come to school anymore. Perhaps if you understand his thoughts and feelings, you can help him and others like him.
He wants you to know that some students cannot tell you what they are about to do, but they do often show you in ways that are unexpected and unacceptable to you and others. Please know they wish they had another way to tell you.
He asks that you listen to his words, pause, and then find solutions so he and others can return. He hopes you will find a way to share with your colleagues.
Here are his words to you:
School is generally overwhelming to me, and many like me. The florescent lights, the walls filled with posters and advertisements
as well as teaching tools, the loud recess whistles and buzzers, the overstimulating noises in the cafeteria, the fire drill sounds, transitions from classroom to classroom for us secondary students, and the echoing in rooms with mostly metal furniture affect our focus and learning.
Smells from foods and the loud chewing of others we are asked to sit with at lunchtime can create anxiety. We also had to pass in the crowded hallways with so many other students who bumped into us or did not allow us space to unlock our lockers, making getting our books and supplies challenging.
I do not want to complain, but I must speak up and be a voice for those who cannot.
Perhaps if teachers just had more understanding, modifications such as the following could occur:
• Allowing us to eat in our classrooms, the library, or a quieter place in the school.
• Allowing us to leave a few minutes earlier than others to get
to our next class, open our lockers, or leave to catch our bus could lessen our anxiety.
• Allowing us to wear sunglasses or our hats inside could lessen the brightness of the lights.
• Priming us for a fire drill. Letting us get ready for the unexpected sharpness of the buzzer or bell could help us avoid getting stuck and move more quickly.
• Allowing teachers to place soft coasters under chairs and desks so that they do not screech along the floors when they move.
• Reducing the unnecessary visual tips posted on walls that tend to confuse us, distract us, and make us wonder what to pay attention to.
I wonder if my teachers know I and others may have poor executive functioning. If they knew we have challenges organizing, problem-solving, and starting or stopping, they might find ways to structure their teaching styles for different types of brains. Sometimes, we do not truly feel time passing and need visuals (Countdown Timer) or verbal reminders indicating only a few more minutes are available. If they reduce the number of problems, especially redundant ones, given to us, I know I might finish what is asked and not get frustrated when time is up. My mom has a Countdown Timer at home, so I can see time passing, especially when preparing for school, a vacation, or a special event.
Some students, like me, process verbal communication slower than others. I try and ask people to slow down and ask me one thing at a time. Perhaps teachers might slow down when giving directions or even write the steps on the board for us. Most of all, please check to ensure you understand. I often have checklists at home to remind me of what I must do (homework, chores, etc.).
I can read just about anything and everything someone puts in front of me, but let me tell you: Many of us don’t always comprehend or remember what we just read. I was told there is a way to help us prepare for having to read a great deal and retain information. It is called Priming (Three Ways to Prime Students for Learning). Perhaps give us the assignment ahead of time to read at home, give us definitions of keywords, or ask us to look them up before we read the pages.
Most teachers seem to understand that our social skills often need a great deal of support, especially if we have a diagnosis of being on the spectrum. We are not sure how to make friends. We are not sure how to work on a school project with others. We are not always up to sharing our feelings or speaking in front of the classroom. We are not always sure how our words affect others and are not very good at reading non-verbal language (I have been told).
Teachers, please teach us first. Teach me to be part of a group. What is my role in the group? Please teach me how to develop
a friendship. Perhaps match me with someone who has the same interests. I may be more able to connect to someone with similar interests. Maybe I could help someone or do a chore with someone in the classroom. Perhaps a speech therapist is on staff and could help me learn how to have a conversation.
I have some challenges writing. I am better off using a computer if that is possible. But, if you have some pencil grips or a slant board I might use, my writing could improve. At a younger age, I used some specially lined paper. If an occupational therapist is on staff—I had one in my earlier years—they might work with me on fine motor development. I may just need more time allotted to written assignments.
Perhaps you are beginning to see why many of us may not want to come to school. When I am anxious about sensory stimulation, social interactions, understanding what is expected of me, and transitioning from task to task, class to class, I just feel like it is best for me to stay at home and learn where there is less chaos.
Mrs. Smith, remember when I told you there are other students who cannot put into words the challenges they have but can show you in ways that are very risky to them (hitting, yelling, throwing things, running out of a classroom, etc.)? Well, they are also telling you they need help understanding expectations, questions, and directions. They need to see why they should learn what you put in front of them. It does not seem meaningful to them. They are telling you they are frustrated and have fears and anxieties. They, too, need less chaos, more structure, and organization to learn. They need help with all the noise, lights, and smells.
Mrs. Smith, my parents are also learning how to support me at home. Maybe other parents do not have the information. Perhaps you might find out their situations and share some of what I am voicing. My parents have a calendar posted on my bulletin board in my room. It shows me when school is in session and when I have days off. It highlights special events, so I can see them coming. It cites when a project of mine is due. My parents
EXCEPTIONAL EDUCATION
try not to throw to-dos at me unexpectedly. They try to warn me when company is coming over. They try to give me time to process their requests and always want to know if I understand their questions or directions.
They have sought additional services to help me increase my social skills and learn how to accommodate my sensory overload. Yes, they consult with an occupational therapist and a social skills trainer. Maybe other families need to know about other services in their community that might help their children. Perhaps you could share such information with them.
I am very lucky to have parents who want to help me and try
their best to encourage me to continue going to school. They have encouraged me to write this letter to you, hoping my voice will help me and others continue to access school. I know it is important for me to go to school and be with all different kinds of kids. I know I need to work on my learning differences, but I need support and understanding.
Mrs. Smith, I hope you are okay with my letter. I want to come to school, but I need some help.
Your English Student
Thank you, Mrs. Smith, for taking the time to read my son’s words.
Your Student’s Mom
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
✉ karensupportsu@comcast.net
TAKING THE GUESSWORK OUT OF TRAVEL WHEN DISABILITY ACCOMMODATIONS ARE NEEDED
By Cindy Schaefer, MDiv, MA
This year, for Spring Break, a friend suggested a family-oriented bed-and-breakfast in Michigan with an indoor pool. As I browsed the B&B website–like any good special needs mama–I clicked right past all the ‘cool’ room features like fireplaces and four-poster beds and instead dove straight into researching the accessible features that would work for Sophia, my 11-year-old wheelchair user.
There was only one room on the main floor that would accommodate our family of four. It had two queen-sized beds in adjoining rooms with a bathroom. “Ooh, it looks promising!” I thought as I started to get excited about surprising Sophia and her brother, Evan, with this fun-looking place. The
bathroom had a bathtub, but again, I thought, “We’ll bring Sophia’s shower bench from home. No big deal.”
Before booking the room, my intuition told me to dig deeper. I found a YouTube video of the room, and it was obvious that the threshold between the two bedrooms was way too narrow for Sophia’s wheelchair. At home, Sophia already hasn’t been inside our pantry in over a year. I could tell this doorway wasn’t any wider.
Disappointment washed over me as I realized that this seemingly perfect getaway wouldn’t work for our family after all. But amidst the disappointment, there was also a sense of
relief. What if I hadn’t taken the extra time to search YouTube? The threshold was not in any of the pictures on the website, and why would the size of the threshold even cross my mind?!? I thought, “Thank goodness I didn’t get my kids excited to go, clean the house and pack the car, board the dogs, and drive six hours just to get there and realize Sophia couldn’t go between the rooms.” I definitely dodged an accessibility bullet!
One of the most important things for any special needs traveler or family is knowing what to expect. When the guesswork is gone, and families like mine know our needs will be met, we can actually relax.
This past fall, I met Lorraine Woodward, the CEO of Becoming rentABLE, a platform for travelers to find accessible short-term rentals. Instantly, I knew that this was where I belonged— advocating for accessible travel and making a difference in the lives of families like mine.
Since being involved with Becoming rentABLE, I've been deeply moved by the global efforts to enhance accessibility in travel for everyone. Inclusive travel continues to skyrocket, with the world’s one billion people with disabilities spending $95 billion on travel.1 This growth is fueled by the rise in Baby Boomers retiring, the growth of multigenerational and blended travel (combining business + pleasure), and world inclusion efforts.
• By 2030, all 73 million Baby Boomers will have turned 65,2 bringing with them disposable income, a desire to travel, and needing disability-related accommodations.3
• Multigenerational travel is on the rise, with 50% of parents in 2023 planning large family trips with children and grandchildren, while over half (54%) of grandparent respondents also report planning and organizing their multi-generational travel experiences.4
• Beginning even before the pandemic, there was a rise in combining business and pleasure, with 41% of travel
managers reporting employees wanting to add leisure time to business trips.5
• Ninety-two percent of consumers believe in the importance of meeting traveler’s accessibility needs. Additionally, 70% are willing to choose more inclusive options, even if the cost is more.1
Lorraine uses the beautiful analogy of "paint by numbers," which illustrates how businesses, organizations, and governments each contribute to the noble cause of making travel more accessible.
• Travel bloggers share inspiring adventures – from adaptive parasailing to exploring icebergs from cruise decks, allowing families to dream of what can be.
• Accessible travel agents and companies meticulously curate vacations worldwide, ensuring that accommodations, transportation, and activities cater to diverse needs and empower families like mine to explore the world confidently and easily.
• Technology firms collaborate with local businesses to provide detailed insights into establishments, from entry points to noise levels, providing peace of mind in knowing things like the size of the bathroom in advance.
• Governments and nonprofits are actively involved in making flights more accessible, promoting accessible destinations, training hospitality workers in autism awareness, and highlighting accessible parks and playgrounds that foster systemic inclusivity.
• And let's not forget the countless companies dedicated to producing mobility and cognitive aids, further enriching the landscape of accessible travel.
Becoming rentABLE’s unique color in the paint-by-number picture helps travelers find accessible short-term rentals, which are a critical piece of the accessibility world scape. For families with disabilities, short-term rentals provide accessible options that can surpass those available at home, such as a wheelchair-accessible stove or a spacious bathtub beneficial for a child on the autism spectrum. Lorraine shares a story of a teenage boy named Gideon staying at her wheelchairaccessible beach house in North Carolina. He said his favorite part of the trip was having a microwave low enough to pop his own popcorn for the first time!
When searching rental options on the Becoming rentABLE website, travelers choose from 43 Mobility and 20 Cognitive filters that best match their needs. Certified properties are vetted by experts in inclusive design and home safety, and pictures and descriptions give families the peace of mind of knowing exactly what to expect.
Becoming rentABLE is also carving new roads in accessibility that expand beyond the vacation. Lorraine’s expansive vision
includes certifying properties near hospitals and medical facilities to provide accessible lodging options for families traveling with medical complexities. Moreover, grandparents seeking to visit grandchildren at college, as well as college students conducting campus visits or requiring accessible accommodations due to injury or illness, can benefit from nearby accessible lodging options.
Personally, I am immensely grateful for the opportunity to be part of this transformative journey. It’s not just about making travel accessible–it’s about offering hope and possibilities to families like mine. With the guesswork removed, we can truly embrace the joy of travel, knowing that our needs will be met every step of the way.
Citations
1 “Inclusive Travel: Understanding Traveler Values & Opportunities for Marketers” Insights Report. Expedia Group Media Solutions. 2022.
2 “2020 Census Will Help Policymakers Prepare for the Incoming Wave of Aging Boomers.” United States Census Bureau. 10 December 2019.
3 Gill Council, Nicole. “AARP Survey: Anticipated Travel Holds Steady for 50-Plus Travelers in 2024,” 28 February 2024.
4 “2023 US Family Travel Survey Results.” Family Travel Association. 2023.
5 “Business Travel Continues Bouncing Back with a Strong Outlook for 2023, According to a New Industry Poll from GBTA” Global Business Travel Association. 6 October 2022.
Cindy Schaefer, MDiv, MA resides in Indiana with her husband and two children, Sophia and Evan. 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, college-level 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.
Caregivers have enough on their plates in just caring for their loved ones However, the life of caregiving is filled with the necessity of advocating for your loved ones with various agencies, hospitals, medical providers, healthcare insurance companies, assisted living/ dementia-care/hospice care facilities, group homes, counties and the like, that can be difficult and challenging to navigate to resolve some pressing situation or matter that must be resolved so it doesn’t cost you a boatload of money! This process can be a lifesaver for you!
A proven process that can remove stress and anxiety and save $5,000
to $10,000 (or more) every year by helping resolve situations that require leverage, urgency, and action to resolve caregiver-related matters of significance faster, for less money It is for parents, family members and caregivers of an underage or adult special-needs child, an aging parent or loved one. A process that will help you better navigate the systems and the bureaucracy to achieve a better result for your loved one It’s about caregiver-oriented advocacy in action! A process that will help you several times a year--once you learn it.
Given there are an estimated 75 Million Caregivers in the U.S. (according to the CDC) spending 20 hours/week (on average) caregiving (unpaid), this process is of immense importance.
The national bestselling author and founder of Reach For Me, Michael A Boylan, has written his 5th book, The Power to Get Justice, outlining this proven process (used in commerce by 100,000 people) Michael was the highest-rated keynote speaker ever engaged when he addressed 6,000 attendees at the Microsoft Annual Global Conference He has also raised his special-needs son for 25 years and understands the complexities of advocating for a special-needs child, aging parent or loved one.
The process helps better address and resolve matters such as:
You’re fighting a claim that’s been denied by your health insurance
You’re trying to get an IEP from the school
You’re battling with the county or state
You’ve been over-charged by a hospital or provider
You’re trying to resolve an issue with a group home
You have a loved one not getting proper care in an assisted living facility
You need an appointment with a specialist, but can’t get in for months
Join us at our Caregiver Financial Resolution Session Briefs (no charge) where Michael will provide an overview of the process and success stories of how caregivers have used the process. Then attend The Caregiver Financial Resolution 2-Day Session Program to learn how to use the process on your own matters of significance
Visit the Events Page at ReachForMe.com for times, locations, and details of upcoming Caregiver Financial Resolution Sessions.
Email: Info@ReachForMe com Office Phone: 952-445-7854
THE VALUE OF CREATING AN INCLUSIVE CLASSROOM
By Connie Persike, MS, CCC/SLP
In a world where even the smallest gestures can carry significant weight, the simple act of greeting someone can set the tone for every interaction that follows.
My own experience of starting each Monday morning, walking into a meeting with my previous boss, who, immersed in her world of emails and reports, wouldn’t even look up to say “hi,” was a true testament to this. This lack of basic human interaction left me feeling undervalued and disconnected. This personal experience echoes the profound impact that such
basic interactions—or the absence thereof—can have in any setting. This certainly includes the educational environment.
Drawing on the findings from Gillian M. Sandstrom's 2023 research, this article delves into the potential of simple greetings in the classroom and offers practical strategies for educators to start the day in the strongest possible way.
The ripple effect of a simple hello
Sandstrom's research provides a glimpse into the power of
minimal interactions. It revealed that students reported having a stronger relationship with their teacher when teachers greet them, even without using their names. Strong student-teacher relationships predict higher levels of interest, enjoyment, and belonging in students’ learning experiences (Sandstrom, 2023). These findings highlight the significance of establishing a personal connection, however brief, in fostering an engaging and inclusive classroom environment.
Fostering an inclusive atmosphere
Creating an inclusive classroom environment starts with making every student feel seen, valued, and acknowledged. When educators make an effort to greet their students, it sends a powerful message of recognition and acknowledgment. This small gesture can significantly enhance a student’s sense of belonging, which is pivotal for their engagement and overall success in the classroom (Pope & Miles, 2022).
Creating an inclusive classroom environment starts with making every student feel seen, valued, and acknowledged.
Enhancing student engagement
A key pillar of effective learning is engagement. Students are more likely to be motivated, participate actively, and invest in their learning when they feel a connection to their teacher (Walton, Cohen, Cwir, & Spencer, 2012).
A strategy for every educator
The beauty of incorporating greetings into the classroom lies in its simplicity and universal applicability. Regardless of class size or subject matter, every educator can adopt this strategy to foster a warmer, more welcoming learning environment. The investment is minimal, but the dividends—in terms of enhanced engagement and a student’s sense of belonging— have been proven to be substantial.
Actionable strategies
Educators looking to start the day on the right note by greeting students can consider the following actionable strategies:
• Incorporate routine greetings: Begin each class with a sincere greeting. Alongside individual welcomes like “Good morning,” you could introduce a unique group greeting, such as a collective “Welcome, everyone!” This consistent
practice establishes a routine and fosters a warm classroom environment. To make these greetings more intentional, ensure they invite genuine interaction. For example, if you ask, “How are you?” be prepared to listen actively to the students' responses. This attentiveness shows you value their well-being, not just academically but personally as well. It's not merely about asking the question but about being genuinely interested in their answer, demonstrating you care about their experiences and feelings.
• Utilize nonverbal cues: Another area of research highlights the importance of teachers' verbal and nonverbal actions, called immediacy behaviors, in strengthening their connection with students. These strategies reduce the psychological distance between teachers and their students, thereby fostering a closer and more connected classroom environment.
Examples include using students' names, circulating around the room, and smiling. These behaviors have been shown to lead to more positive feelings about the teacher and the class, increase motivation and enjoyment, and enhance students' perception of what they're learning (Sandstrom, 2023).
In light of this research, a strategic use of non-verbal behaviors can be used intentionally to build connections with students. For instance, a genuine smile can bridge the gap where words may fail. It's a universal sign of welcome that can make many students feel at ease and more connected to their learning environment, even without using names (or words!).
• Show authentic interest: Enhance your greetings with brief, meaningful exchanges that convey genuine interest in students' well-being or academic progress. This could be as simple as commenting on recent class activities or inquiring about their understanding of the course material.
• Diversify your greeting methods: To keep interactions
dynamic, vary your greetings by incorporating different phrases, questions, or even light-hearted comments appropriate to the context. This prevents greetings from becoming monotonous and helps maintain an intriguing classroom atmosphere. To help add variety, create a list of simple, warm verbal greetings that you can rotate through, preventing the routine from feeling stale and keeping it engaging for students.
• Create a reminder: Post a visual reminder, like a note or symbol, near the classroom door to cue the practice of genuine acknowledgment as students enter.
Maximizing the effectiveness of greetings
To ensure that greetings are as impactful as possible, educators should consider the following additional tips:
• Be mindful of your delivery: The tone, volume, and warmth of your greeting convey your attitude and intent. A friendly, warm, and enthusiastic tone can enhance the perceived sincerity of the greeting and send cues of safety and belonging to your student (Porges, 2022).
• Developing a habit: Remember that what we practice gets easier, and small, consistent changes over time create new habits (Clear, 2018). Use a habit-tracking tool or app to mark each day you successfully utilize a greeting. Partner with a colleague to check in with each other and encourage and confirm daily greeting practices.
• Reflect and adapt: Set aside regular reflection time, perhaps weekly, to consider what's working and what
might need adjustment in your greeting practices. Develop a simple, anonymous feedback mechanism where students can share their thoughts on the greetings, providing insights to adapt your practices. Ensure your greetings are extended to all students, avoiding any impression of favoritism or exclusion. Take time to track and reflect upon who you are greeting and who you may be missing. This can help us, as educators, take note of our implicit biases.
• Adapt to cultural sensitivities and neurodivergent needs: Recognize and respect the diverse backgrounds of your students. Being aware of different greeting norms can help avoid unintended discomfort or miscommunication. For instance, teachers can adapt their approach to autistic students who may find direct eye contact uncomfortable. Instead of providing eye contact during greetings, educators can focus on speaking gently, using a friendly tone, or offering a smile. This way, the teacher adapts their greeting style to be more inclusive and respectful of the student's neurodivergent needs, promoting a welcoming and comfortable environment for all students.
Gillian M. Sandstrom's research illuminates the profound impact that even the simplest forms of recognition can have on students' academic experiences and their connections to their teachers. By adopting the above strategies, educators can leverage the power of greetings to create more engaging, supportive, and inclusive classrooms where every student feels acknowledged and valued.
References
Clear, J. (2018). Atomic Habits: An Easy & Proven Way to Build Good Habits & Break Bad Ones. Avery.
Pope, D., & Miles, S. (2022). A caring climate that promotes belonging and engagement. Phi Delta Kappan, 103(5), 8-12.
Porges, S. W. (2022). Polyvagal theory: A science of safety. Frontiers in Integrative Neuroscience, 16. https://doi.org/10.3389/fnint.2022.871227
Sandstrom GM (2023) Even minimal student-instructor interactions may increase enjoyment in the classroom: Preliminary evidence that greeting your students may have benefits even if you can’t remember their names. PLoS ONE 18(8): e0288166. https://doi.org/10.1371/journal. pone.0288166
Walton, G. M., Cohen, G. L., Cwir, D., & Spencer, S. J. (2012). Mere belonging: The power of social connections. Journal of Personality and Social Psychology, 102(3), 513–532. https://doi.org/10.1037/a0025731
Connie Persike, MS, CCC/SLP, is a highly experienced Speech Language Pathologist and Educational Consultant. She has 20+ years of experience in educational settings and holds a certificate in instructional coaching, positive education, and applied educational neuroscience. She served as a member of the multi-state work group to help develop the Common Core Essential Elements for English Language Arts. Connie writes for Autism Parenting Magazine, Exceptional Needs Today, and is a guest blogger for The Alliance Against Seclusion and Restraint . She created an innovative process to assess student behavior, which deviates from the traditional behaviorism approach and aligns with current relational and neuroscience while maintaining a trauma-sensitive and neurodiversity approach. Connie works from the guiding mission that Connection + Collaboration = Endless Possibilities.
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EXCEPTIONAL ADVICE FROM MESHELL Helping People with Special Needs Cope with Grief and Loss
By Meshell Baylor, MHS
"Those who were always there for us in this life will always be there for us in our memories."
As parents and caregivers, we have many conversations about life with our children. We talk about graduating from school, navigating life, and making friends, but discussing death is something no one ever seems to want to tackle. Talking about the loss of a loved one impacts everyone, but how does it affect someone with special needs? How do we explain loss? Merriam-Webster’s dictionary defines loss as the process of losing something or someone, the uncertain feeling of dismay due to absence. According to the Recovery Village, about 2.5 million people die in the United States annually, each leaving an average of five grieving people behind.
When the news is given that someone special in your life has
died, it feels as if the world should stop moving to feel the excruciating pain you experience losing someone so important in your life.
When we speak in the context of grief and loss, it is hard to process the loss, let alone talk about death. It can be challenging to explain death and loss to a child who may not comprehend. They may understand that something is different and that someone regularly present in their lives has not been seen lately. If you have a child who does not know how to process what has occurred with losing a special person in their life, here are some tips for easing into a therapeutic dialogue:
• Communicate: If your child can converse, then have "the
talk." Choose a place that comforts them, such as their room or calming circle, but make sure they feel secure.
• Select your wording: You must be able to convey explaining loss in a way that gives them a clear understanding. Some children may not understand metaphors such as (passed on, is no longer with us). You must word it in a way that they can understand. For example (Grandpa’s heart stopped beating, and he died).
• Seek spiritual guidance: If you are unable to communicate or cannot find the words to say to your child about loss, seek a spiritual advisor or clinical therapist to speak with the whole family. There is no judgment in seeking grief counseling.
When we speak in the context of grief and loss, it is hard to process the loss, let alone talk about death.
Losing a loved one is unfamiliar territory for many of us, yet everyone is impacted by this sudden loss. The atmosphere in the air still lingers, a familiar presence of your love, but the reality is they are no longer there, and the grief alone is challenging to cope with. As a parent or caregiver, you must help the child cope with the loss with an understanding that will guide them into a positive understanding in knowing that although our loved ones are gone, we can still remember them and find ways to celebrate their lives. Here are some suggestions to help process grief and loss:
1. Jot down feelings
Writing can be therapeutic. Have your child write a letter about a positive memory they have shared. Allow their feelings to be a voice using a pencil and paper.
2. Create a picture
Drawing a picture or image to demonstrate self-expression is a mechanism that can help children focus on their feelings and release pain.
3. Talk about it
Having the family talk about loss and grief is challenging, but sometimes, it's okay to bring the family together to allow each adult or child to express how they feel about losing a loved one. No bad comments or words can be or
should be judged upon when discussing loss. According to Dr. Elizabeth Kubler Ross, the stages of grief are denial, anger, bargaining, depression, and acceptance. It is natural for the child or loved one to go through at least one of those stages. Those group conversations should include positive memories and stories to help the family remember great times spent with that individual.
4. Seek support if needed
If you have tried writing, drawing, and having the talk with family, and you still feel like your child is struggling to get across their feelings, then it is best to try to obtain a professional who specializes in grief and loss. Seeking guidance from a professional will help your family and child learn how to process grief. They will provide healthy tools to ease into a foundation of nurture.
5. Check out available resources
Make sure to check with your child's school, programs, or development center for additional resources. Your social circle of support is part of your child's team. Connect with your team and inform them of the loss so that they can provide additional resources.
6. Practice self-care
In this time of pain, it is important to practice self-care. Take Personal Family Leave (PFL) if your state allows it so you can focus on your family affairs. Inform your child's school so that if they need to heal and recuperate, the time is available to them.
In this chapter on loss, the overall goal is to ensure that everyone in the family, especially your special needs child, is supported. Healing is a process that takes time; it does not go away so quickly. Do not feel guilty about taking time away from work, school, or projects. Your goal is to heal and help each member of your family cope with the loss of their loved one and slowly learn to heal in the process of change. Do not apologize for taking time off or away, and do not feel guilty for stepping back from things. You will return to work, school, and those projects when you are ready. They will still be there because your biggest goal is to allow the healing to run its course.
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
KATE MAKES IT GREAT! Navigating Transitions with Loved Ones Diagnosed with Special Needs
By Kate C. Wilde
Our days, weeks, and lives are filled to the brim with transitions. If you are a parent, you may be filled with dread just thinking about having to get your children up and out the door in a timely manner. If you are a professional, you may have similar anxiety when you think of your day and the multiple therapy sessions that lie ahead of you or, if you are a classroom teacher, all the transitions you have to help multiple children navigate through the day.
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.
Philippa from New Jersey asks:
My 10-year-old on the spectrum gets super resistant when we move from one environment to another. He is bigger now, so I cannot pick him up and move him like I used to when he was little. This is something I am finding really challenging and is creating a lot of anxiety for both of us. Please help; it is really becoming very difficult, and we are getting into a lot of battles about it. I find myself feeling very resentful towards him.
Hi Philippa, thanks so much for your great question and your honesty; many parents feel the same way you do, so you are not alone, and you are in good company. I think the following three steps will make a huge difference for both of you.
1. Give yourself a transition vacation
This means that for a period of two whole days or more, you stay home. This will:
• Get you out of the battle pattern you are currently in.
• Help you restore your relationship, giving you time to enjoy one another again without any looming transitions to navigate. Reconnecting in this way and starting to trust one another again is the key to changing your transition dynamic.
• It will help you both lower your cortisol levels and recalibrate your nervous systems. Then, it will be easier for both of you to stay calmer and more regulated during the tricky transitions.
2. Give yourself double the time to make the transition
Giving yourself ample time is key to you taking your time. Rushing is the enemy of any transition. Our loved ones on the spectrum can feel the slightest “rush” on our part; the energy of our “rush” overloads their nervous system and can easily tip them into fight or flight. Then, either a meltdown occurs, or they shut down, and that is where his “resistance” is coming from. Giving yourself double the time to get out of the house or out of the car when you get to your destination is key. Then, you can relax and take the transition slowly. This will give him the time to do it on his timeline while still getting to the place on time.
3. Think ahead
An hour before you start leaving the house, don’t introduce any activity that you already know he may have a hard time leaving. Screens, playing in the backyard, or projects that require something to be completed are often good ones to avoid. That way, you will not be interrupting something that he may have a hard time leaving.
Birgit from Sweden asks:
My daughter Annika is starting a new school soon. I am really nervous that I will not be able to handle this change well for her. She will melt down in the car if I go a different route to her current school. She really needs things to be the same. How can I make this easier for everyone? I am afraid she will refuse to go.
Hi Birgit, thank you for your question. It is a good one and will help many people who have the same question. It is okay that you are afraid. Embrace it, and then gently remind yourself that you both have gotten through changes in her routine. You helped her adapt to the school she is currently in, and this will be the same. You both will get through this. Hopefully, reminding yourself of this will help you become more optimistic about this upcoming change. Our kids are always subtly reading our energy to determine if something is safe. Your optimistic energy will signal to her that this change is a good and safe thing and will help you come up with creative ways to help her. Then try the following steps:
1. Talk to your child
Sometimes, when we are afraid of something, we can put off talking about it. When you are feeling optimistic and good, start talking to her in detail about this upcoming change. Even if she does not show you she is listening or understanding, still talk to her. In my experience, most children can take in and understand verbal communication even if they cannot let us know they do.
2. Use pictures to prepare your child
Show her pictures of the school, the new classroom, and the teachers before you go and visit it for its open days. Talk about it and show her these pictures every day, starting at least a month before you go.
3. Drive to school each day
Find time every day to travel from your house to her new school. Please do this at least two weeks before she starts. This will help her get used to the new route and help her feel comfortable with it. As you drive from your house to the new school, point out the new landmarks along the way that she may like and begin to recognize. You could count the number of traffic lights or point out a lovely tree or store she may like. Once you get to the school, get out of the car and walk up to the door (if that is possible); once at the door, let her know that soon, she will be going in. You can even count down the days to when she will be going in.
4. Leave for school early
Allow plenty of time on the actual day that the new school starts. If she has a meltdown in the car on the way, you can hang out with her until she is in a more regulated state before you must leave it and go to school. Most likely, because you have done this new route many times before, she will be more comfortable with it and be able to stay regulated. Then, you can use the extra time to go slowly and not rush, thus making the whole morning smooth for you and her.
One last thought for all of us facing tricky transitions. Less is more. In my part of the world, spring is busting forth. In tribute to that, do a spring cleaning of both of your schedules. See if you can eliminate one non-essential transition every other day. This will be a big step in reducing overload, giving you more energy and resilience to manage the ones left over.
Send in your questions, stories, and thoughts. I so enjoy being part of your journey!
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.
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.
NINE TIPS FOR UNLOCKING SPEECH AND LANGUAGE SKILLS FOR CHILDREN WITH AUTISM
By Karen Kaplan, MS
These days, I hear so many parents and teachers reporting there are just not enough speech and language therapists and that they must wait to find out how to help their children either begin to communicate, expand their communication skills, or understand the communication of others.
I say, do not wait. You have all the tools, supplies, and equipment you need right in front of you. You can use all the meaningful and naturally occurring objects and activities in your schools, homes, and communities to teach or expand communication, expression, and comprehension.
1. First, make sure you are not thinking for, problem-solving for, or choosing for your pupil all the time. If you wish them to learn to decide, request, and follow directions— activities that build communication expression and comprehension—you must encourage them to think, choose, and problem-solve. What would you like for breakfast? Do you want eggs or toast? Can you please get the butter out? It is cold outside, what should you wear? Can you turn on the hot water for your bath, please? I cannot find the broom; do you know where it is? Which book should I read to you? Oh no, the light bulb went out. Do you know where I keep the extra ones?
2. Next idea. How many of you still get Amazon deliveries at least weekly? Well, use those boxes and big envelopes to expand your skills. First, let your child get involved in bringing those boxes and envelopes indoors (motor planning) and opening them. Model the steps; show them how to open and close. Now, some have sensory packaging. Teach them to pop, crunch, and press to deflate them. What is in the box? Is it a good question or a guessing game? Then, whose item is it? Is it the mother’s, father’s, or a sibling’s package? After answering correctly, they can bring the item to the person. Lots of problem-solving!
3. Get them involved in cooking. There are so many vocabulary words to associate with the actions (open, pour, cut, stir, mix, chop, blend, flip, turn over, unscrew, etc.). Model and name the action you are doing. Then, ask them to do the action and then ask them what they are doing.
4. Take them to restaurants, cafés, and stores and teach them to ask for help, give their own lunch or dinner requests, greet the barista making their drink, and say thank you with each request granted.
5. Take out puzzles, matching games, and regular games that teach concepts (categories, colors, numbers). Engage them
in those games and puzzles. Ask the names of different parts of a game, have them point to specific pieces, or give you specific pieces your name. Games and puzzles offer lots of vocabulary building (transportation, fruits, farm animals, colors, shapes, numbers, top and bottom, ocean creatures, etc.).
6. Remember your pupils are always showing you what they want. They may not say it, but they might point to it or look at it. Observe them closely. When they look at the item they wish to have, acknowledge it: “Oh, you want that book.” When they point to it, acknowledge their point. Then, offer them the word or sign to model or try.
7. Take them to museums and zoos (train, animals, children, science) and point things out. Have them point to things you name. You are building comprehension. When they name or sign, they are expressing language.
8. Do not forget trips to the library. Finding books is problem-solving. Sitting down and looking at pictures and naming them is learning to comprehend words. Have them point to what you name. Then you know they understand your words.
9. Hey, teachers! School sites are loaded with communication opportunities. You do not have to wait for a student to be pulled out for speech therapy. You can build, expand, and encourage communication, expression, and comprehension.
• Set up a little library in your room. Take them to the school library weekly. Fill your library with audiobooks. They listen and turn pages. They hear the words and begin to develop an understanding of vocabulary.
• Give simple one-step directions at directions first. See if they can follow one-step directions. Once they can, add another related step. Only add unrelated steps once they have accomplished the first two steps.
• When you create your lessons, make sure you introduce new words in several ways. Teach categories in different ways—not just auditorily, but visually.
Check for understanding. Let them learn through board games and puzzles, too. Use art to teach. Every brain learns communication differently.
• Show them where supplies are stored. Teach them to obtain them with simple one-step directions.
• Teach them where recess equipment is located and have them take them outside. But teach recess first. Show them what they can do at recess (games, equipment, etc.). Remember all the verbs that occur at recess (throw, catch, shoot, toss, climb, skip, kick, run, hop).
• Pair your child with a classmate and have them do puzzles and games together.
• Teach them different ways to ask for help.
• Ask them to take things to the office or another classroom.
• Show and tell inspires communication skills.
• Use music to teach words, actions, and movement.
• Schedule field trips to science and art museums to build vocabulary.
• Let them plan special events in the classroom (holidays). Think of all the new vocabulary they are going to be exposed to. Think of all the directions they will need to follow.
• Teach sign language in your classroom.
So, try the above while your child waits their turn to be evaluated or receive speech therapy services. Do not wait. Everyday life offers meaningful opportunities to acquire communication understanding and express needs and wants.
Resources teach-com-skills.pdf (vumc.org)
Autism communication strategies that work | The Spectrum Communication skills for kids with special needs — Hope Haven DSA-communication-and-language-C03.pdf (downsyndrome.org.au)
What is S2C? | Spelling to Communicate | I-ASC Sign Language for People with Developmental Disabilities | Parents Inc
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
✉ karensupportsu@comcast.net
FEARLESSLY PURSUING THE DREAM FOR FREEDOM AND INDEPENDENCE WITH AUTISM
By Regina Williams
Iheld her up just yesterday as she was determined to make the circle around the ice skating rink in any way possible. I could feel the constant pull of her weight every nano-second of our shared journey. It instantly became obvious that her dream of gliding effortlessly across the ice as she had seen others do was, once again, not going to be her reality. In fact, the weight of her total inability to carry herself across that icy terrain was almost breaching my own body’s strength to hold her up.
This was a familiar feeling for us. Once again, she had to accept that gliding along on her own was not happening, and I had to accept that letting her go was, once more, not an option.
My beautifully determined girl has the same dreams for herself as I do. We share the exact same dreams, hopes, and prayers. My girl is constantly pursuing that feeling of total freedom and independence from my clutches that still hold her up when needed. She dreams of soaring weightlessly/effortlessly through life. I dream of letting go, standing back, and basking in the ethereal glow of her takeoff. She dreams of flying, while I dream of letting her soar.
This mentally and physically exhausting dance has been our reality since the early days of my Grace’s diagnosis. She would be considered “high functioning” due to her ability to speak, tend to her own basic/physical needs, and even do well (academically) in college. Her reality is quite different. The term “high functioning” was much more meaningful in her younger years as she still had friends, school awards for sheer determination and hard work, and an occasional social life with acceptance by her peers.
However, as she grew into her later school years and her friends began to care more about her differences and quirks than accepting them, I was forced to watch as her confidence shrank and her loneliness slowly grew. I took every possible
action to keep my girl from continually experiencing this, culminating in bringing in experts to work with the school to implement a program to establish peers that would show my girl friendship and acceptance. I found a brick wall at every turn in helping her socially and emotionally. We both lost cherished friends as time marched on, and we were unable to keep up with either. In fact, Grace once told me that it felt like she was being left behind.
Soon, life became Grace and I navigating this world to the best of our abilities together with very needed support from God and family. This support has been a blessing, and I know it is not afforded to everyone on this path. I am extremely thankful for it. However, it is still a very isolated and lonely way to navigate life—especially for a young college student, especially for a girl who dreams of flying.
She still enjoys sharing her dreams of flying with all of us. She tells us the details as her demeanor and body language reflect the feeling of weightlessness soaring during these nighttime “flights.” The feeling of being weighed down by her constant, earth-bound challenges dissolves as she physically and emotionally relives each moment of soaring across God’s skies. I remain solidly on the ground below, feet firmly planted as I watch her happily soaring above me. Wow! She truly is dreaming my dreams, as well. In fact, I’m sure that she finds friends, acceptance, and peace as she reaches the end of each journey through those cherished skies. My constant prayer remains: “God, please grant her the same during her earthly journeys, and grant me the time on this earth to see it happen. Amen and Amen.”
Regina Williams is a speech/language pathologist with a passion for improving the communication skills of exceptional children. 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 the age of 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 Kayla.
Regina’s two daughters have been her biggest motivation in her writing. Watching her younger daughter, Grace, bravely navigate the challenges of life on the spectrum inspired her most current narrative called She Dreams of Flying.
IT’S ABOUT THE PROCESS, NOT THE PRODUCT: An Interview with
Twins
By Amy Wagenfeld, PhD, OTR/L, SCEM, EDAC, FAOTA
Ask yourself, what can you do outside that you currently do inside? Someone I know said he would like to fold his laundry outside. He dislikes this task and thinks folding outside would make it more pleasurable. Now, ask yourself, what can you do with your children outside that you currently do inside? This is the essence of this issue’s nature notes column.
I spent an hour with twin third graders Dave and Joseph over Zoom a while back. Mom and I had coordinated to get the boys set up to do some nature drawings outside—an added health and wellbeing bonus. We had a bit of a weather blip and nearly had to draw indoors while looking out a window (which research tells us is also health-promoting), but the weather changed, and the boys got to go outside.
Mom had already set up the table with drawing supplies and paper, so everything was well organized. Before starting to draw, we shook out our sillies and wiggled around a bit to prepare ourselves to draw (and for me to be ready to observe and take notes). This preparatory movement is important and can help children and adults feel ready to do whatever task awaits them.
After getting seated, I invited the boys to close their eyes and think about what they like doing outside. Dave’s first response was to say he likes to eat candy, but then he added that he loves swimming and diving with Joseph in the pool. Joseph likes to swing, and the best part of swinging is going back and forth because it makes him feel like he is flying. He likes to swing with Dave. Such a tight bond these boys have with each other!
Knowing my favorite outdoor activities were pool and swingrelated, I invited Dave to draw a picture of the pool, anything his imagination had invited him to do. And for Joseph, my invitation was to draw a picture of swinging—anything about it that felt right to him. My cues were always invitations rather
than declarations. This was not a required activity, so why set up a potential confrontation?
I gave the boys time to think and process their drawings, not leading them but sometimes cueing them to close their eyes and let their imagination guide them, thus allowing them to “spring forward their ideas.” Again, I intended to set up a nonthreatening situation enhanced by an outdoor environment, where research tells us that opportunities to learn and focus are enhanced.
Dave jumped right into the activity, but Joseph felt a bit constrained. His loving brother Dave encouraged him, as did I, but from the sidelines. Mom also provided kind, steady, and respectful encouragement, never scolding or demeaning Joseph for not feeling confident about his skills, as he told us he wanted his swinging drawing to be perfect. He wanted to draw in 3D, which is amazing for a seven-year-old, but then again, the boys are amazing, and this is from a very biased “Dr. Amy.”
Dave continued to sit at the table and draw, but Joseph needed to get up, so to help him refocus and provide some proprioceptive (body awareness in space) input, I invited him to jump up and down 10 times. After Joseph willingly did this, Dave invited him to close his eyes and just draw “like he does.” With this cue and 10 jumps, Joseph began to draw a bit but was not fully engaged, still concerned about achieving perfection. In the meantime, Dave continued to draw his pool scene.
At this point, I invited Joseph to draw and stand up. A different body position and one that provides different proprioceptive input can be re-orienting. Joseph wanted to get closer to the swings in their backyard to have a closer look to help inspire his drawing, so Mom and Joseph headed down from the deck into the backyard to look. More movement! Dave stayed seated at the table, drawing.
Joseph returned to the deck and asked if he could take his paper and pencils and get closer to the swing so he could draw
there. I thought that was a great idea, and I was so pleased that Joseph came up with an option that would serve him better. He felt safe asking me. What strength and initiative!
A different body position and one that provides different proprioceptive input can be re-orienting.
Dave continued to work on his pool drawing, using colored pencils and markers, quietly working, and not needing any external prompting. I gave a few words of encouragement because that is who I am, but it may not have been needed. For those who remember their developmental psychology, Dave did a bit of “private speech,” talking himself through moments of artistic challenge. It was lovely to see this strategy worked well for him.
After a while, Joseph and Mom came back to the deck. He was still unsatisfied with his drawing, but I invited him to think about whether he was doing his best, which he said he was, and to tell himself that no matter what he draws, it comes from his imagination, which is wonderful. We discussed artistic interpretation and imagination and how it works in art.
Dave piped in that art could be abstract. Wow!
At about this point, Dave told me he wanted to look older, and we giggled when I jokingly invited him to draw a beard on his face! There is plenty of time for that when he is (way) older. Dave’s drawing approach was to go in deep (no pun intended!) with the details of his pool and be very systematic about his drawing process. For much of the hour, he stuck with the activity, shifting in his chair every now and again but intent on the drawing.
Joseph and I talked about writing a story with words, but it was not a super well-received idea. I get it! At this point, Joseph had started to draw but was still not pleased. Because Joseph likes to swing and he was seemingly frustrated with drawing one, I invited him to draw a picture of his face and how it feels
when he is swinging. An interesting idea, but not the way he wanted to go. Then he decided to also draw a pool, like his brother. Another far better idea was brewing and being open to flexibility served us all well.
I found out Joseph is an accomplished photographer! Instead of drawing, he wondered if his nature-based activity could be using Mom’s smartphone to take photos of things in nature he identified as being interesting. What a brilliant idea, and Mom was into it. This strategy (from Mom and me) was intended to support Joseph’s strengths and sense of agency. Each boy got to showcase their interests and strengths, and in the end, here are all the great things that happened:
1. They spent time outside, experiencing the benefits of being in nature. That's a great thing!
2. The boys each engaged their sensory systems in ways that helped them—for Joseph, the movement and proprioceptive input helped organize him. We do not all learn or experience the world the same way. Recognizing this is an invitation to let children learn and do things in ways that work for them. Some will want to sit and work, others to stand or lay on their bellies. Some will want to pace before and during their on-task time. Some may want to fidget with toys or other small objects. All these strategies help children and adults to self-regulate and manage their emotions. I invite you always to remember to put on your sensory goggles to reflect on how we enrich our sensory systems.
3. The boys each got to express their artistic talents in ways that served them best. There were no expectations; it was about the process, not the product. We all need more of these experiences.
4. I spent a precious hour with “my” beloved, sweet little boys.
References
Kuo, M., Barnes, M., & Jordan, C. (2019). Do experiences with nature promote learning? Converging evidence of a cause-and-effect relationship. Frontiers in Psychology, 10, 305. https://doi.org/10.3389/fpsyg.2019.00305
Schutte, A., Turquati, J., & Beattie, H. (2017). Impact of urban nature on executive functioning in early and middle childhood. Environment and Behavior, 49(1), 3–30. http://dx.doi.org/10.1177/0013916515603095
Scott, J. T., Kilmer, R. P., Wang, C., Cook, J. R., & Haber, M. G. (2018). Natural environments near schools: Potential benefits for socio-emotional and behavioral development in early childhood. American Journal of Community Psychology, 62(3-4), 419-432
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 �� www.amywagenfelddesign.com
�� workjournal.org/nurture-through-nature
Dos and Don’ts for Healthcare Professionals in the Special Needs Community
By Diana Romeo
Taking a person with special needs to a doctor can be a challenging experience. I have a 21-year-old son who has autism. Doctors’ visits can be very stressful for him. You are absolutely expected to behave in a certain way, bar none. People are expected to enter the office, sign in, and wait quietly while seated. These may seem like basic requirements, but they may be difficult or near impossible for some people.
Here are some dos and don’ts to help medical appointments go smoothly:
1. Limit the wait time for patients
Try not to keep patients with disabilities waiting for an extended period. The anxiety of waiting, added to the anxiety of having an exam, can make the process harder for everyone. The calmer a patient is, the more successful an exam will be. It would be better if paperwork could be done before the appointment. Making appointments in the early morning or right after lunch, before the office runs behind, can also be helpful.
2. Learn to care for neurologically diverse patients
When getting past the waiting room and proceeding to an exam, there are a host of other issues to be dealt with that do not generally come up with neurotypical people. From our experience, it doesn’t seem that most doctors are trained in how to deal with the neurologically diverse. This is a disservice to both the doctor and the patient. I believe doctors really want to serve their patients but are simply unaware of the myriad of difficulties a visit can cause for a special needs patient. It is certainly frustrating for the patient who deserves good medical care.
3. Address both the caregiver and the patient
I can’t tell you how often a doctor has addressed me, not my son. Many patients will have a caregiver with them. Please
address both the caregiver and the patient. If the patient cannot or does not respond verbally, that’s okay. Just because someone doesn’t respond doesn’t mean they are not taking in what you are saying. No one feels good when they are excluded. It’s a matter of simple respect.
Many patients will have a caregiver with them.
Please address both the caregiver and the patient.
4. Meet patients where they are and with respect
Please speak slowly, clearly, and in simple terms for patients with cognitive issues. Some may have processing delays. My son needs a minute to digest what you’re saying. If you speak too fast, he doesn’t have time to finish processing the first thing you say—you start on the next thing too quickly. Do not speak loudly unless someone is hard of hearing. Do not treat an adult with a disability like a small child. Saying “good job” is appropriate, but don’t tell an adult of any age that they are a “good boy” or “good girl.”
5. Determine how well the patient can communicate
It’s a good idea to ask questions about the patient’s ability to communicate, any behaviors that may come up, and sensory issues. Some patients may be able to advocate for themselves. For those who cannot, guardians know their child best and are happy to be given a chance to share to make things easier for everyone.
6. Always ask permission before touching a patient
Many people have sensory issues, and being touched is very uncomfortable for them. It’s very important to let them know what is happening. Explain what you are doing and demonstrate an instrument first. For example, try something like, “I’d like to look in your ears now with this light. Is that okay?” It’s helpful to model what you want your patient to do. “Open your mouth and stick out your tongue like this…”
7. Stay flexible
Sometimes, a patient may not be able to follow a command. This does not mean they are being difficult. They may not understand exactly what you want, or it may make them too uncomfortable. Flexibility is the name of the game here.
8. Maintain patience
We had a doctor who wanted my son to swallow while feeling his glands. This was a new command for him, and he didn’t immediately understand what the doctor wanted. The doctor was frustrated. The doctor obviously didn’t understand why something so routine was difficult, but it wasn’t routine for my son. Novel things are hard. Patience is the only way through.
Once a healthcare provider is aware of some of their patients' special issues, I think patient care will improve tremendously. It really comes down to respect and communication on each side. Patients need to realize a doctor cannot know everything about everyone. It’s fair that there is a learning curve. Like anything that is new, the more you deal with it, the less difficult it becomes. Providers need to be open and understanding of their patients’ unique situations. If both sides are open to each other, we can build mutually respectful and successful relationships, which lead to better care.
Diana Romeo has been on the front line of mothering a very sweet 23-year-old- young man who falls on the severe side of the autism spectrum. She is also a mother to a sweet 21-year-old daughter. Diana Romeo recently published her first book, From an Autism Mom with Love She’s published articles in Her View From Home, Your Teen for Parent, Autism Parenting Magazine, and Exceptional Parent Magazine �� linktr.ee/dianaromeo
EXCEPTIONAL SPOTLIGHT
Dynamic Non-Speaking Autistic Woman Tells Families Never to Lose Hope
By Haiku Haughton
In this column, we will explore the journey of individuals defying misconceptions surrounding non-speaking disabilities. Meet our guest, Siri Chettipally, who shares her story of resilience. Discover the profound inspiration she draws from familial support, reflection on pandemic-induced changes, community engagement, and invaluable lessons learned. Join us on this inspiring journey of triumph and hope.
What challenges do you encounter as someone with a nonspeaking disability?
I encounter people underestimating my ability to understand exactly what they are saying and my ability to manage social situations. I have autism, and although I can’t always express my thoughts through speech, I hear everything and am capable of understanding what is going on more than people could ever know.
I have autism, and although I can’t always express my thoughts through speech, I hear everything and am capable of understanding what is going on more than people could ever know.
In what manner does your family serve as a source of inspiration for you?
My family inspires me because my mom and dad never gave up on me. Additionally, my brothers are training to become Spelling to Communicate practitioners, which fills me with joy as it feels like my entire family is on this journey with me.
How has your daily life changed because of the pandemic?
The pandemic has increased my appreciation for life's simple pleasures, such as spending time outside. In addition, returning to in-person schooling after relying on Zoom has granted me a newfound appreciation for the traditional classroom experience.
What activities do you do in your community, and what parts of them do you enjoy the most?
I thoroughly enjoy horseback riding because it puts the reins in my hands, which hasn’t been the case for most of my life; another activity I've recently started doing more is boxing with trainers, which helps me control my body and release frustration. Ultimately, this enhances my ability to spell my thoughts via the letterboard, a skill I've diligently honed through consistent practice sessions with my practitioner Mitch at Bay Area Spelling in Petaluma, enabling me to communicate on this level.
Can you share something you've learned from your experiences that you think others might find helpful?
I want to share that, no matter how dark times might get, I never lose hope completely; at one point in my life, I overheard teachers saying I would never be able to communicate, yet now I’m writing essays in my college English class. My current goal is to become a scientist, continuing to pave the way to show there are no limits to what a non-speaker can achieve.
As we wrap up this column, we've had the privilege of joining Siri Chettipally on a deeply personal journey of resilience and growth amidst the hurdles of non-speaking disabilities. Through Siri's experiences, we've witnessed universal themes of family support, adapting to pandemic changes, and finding strength through community engagement. As we bid farewell, let's carry forward the lessons of hope from Siri's story, recognizing that there lies the potential for triumph and inspiration in our own challenges.
Haiku Haughton is a University of Central Florida student obtaining a Bachelor of Arts degree in Writing & Rhetoric and a Certificate in Editing and Publishing. Born in Montego Bay, Jamaica, with an English teacher for a mother, Haiku was immersed in writing at a young age, and that same immersion continues today. Whenever his eyes aren’t plastered to the monitor of his desktop, Haiku directs his time towards his other passions, which include archery, art design/analysis, nature walks, and reading books on various topics. Haiku serves Exceptional Needs Today as an Editorial Intern.
SAFETY GOALS WITH NICOLE
REDUCING THE RISK OF ABUSE WITH CHILDREN WITH DISABILITY
Safeguarding Vulnerable Children with Disabilities and Autism
By Nicole Moehring
Ableism is defined as discrimination against individuals with disabilities. Society has come to devalue, undermine, and isolate individuals with disabilities. This renders them less human and less valuable, making them more vulnerable and heightening their risk of being abused.
Discrimination against individuals with disabilities continues to become more problematic in society. Ableism has allowed societal responses to lack empathy and support. It has also created dependent individuals instead of supporting and enabling independent individuals. This results in individuals with disabilities learning compliance from a very early age. We teach them to be robotic without giving them choices or a free thought process. We deny children with disabilities their right to choose between options or say “Yes” or “No.”
This becomes problematic if a situation presents itself and the individual is harmed. How do we teach them to say NO? How will they know they are being abused if they aren’t being taught? The answer is simple. They won’t! Hence why there is a global epidemic of children with disabilities being abused and neglected.
Many times, children with disabilities suffer ongoing abuse or neglect. As a result, they suffer from trauma, affecting everyone in different ways. Typically, it affects the way a child behaves at home and school.
Trauma doesn’t only affect a child in the short term. Unfortunately, often, it has lasting effects. It can disrupt their emotional, mental, and psychological health. Due to the lack of education of both parents and the child, it can take a while even to know the child has been abused.
If children feel they can’t trust an adult or become fearful of their surroundings, they act out. This happens whether they are at home or school. They become on high alert, looking for danger. When someone isn’t aware that the child has suffered a traumatic experience, it may look as though the child is acting up or misbehaving. Many times, a child’s misbehaving has been mistaken for attention-deficit/hyperactivity disorder (ADHD), and it will be suggested to parents to have them evaluated so the child can be started on medication. However, this only masks the problem. If the child has been the victim of abuse, ADHD medication is not going to help them. Children who have been abused need to attend psychology sessions with a specialist trained to work with children with disabilities in trauma therapy.
The best way we can begin to reduce the risk of children with disabilities being abused is through education. Without education, the child has no basic information or language to be able to know that abuse has happened or how to tell someone.
As parents and a society, are we trying to protect our children by sheltering them from necessary information? Yet, by doing this, we are only hurting them. Because without educating them, we are setting them up to fail. Sexual education is very seldom offered in a particular education curriculum, and when it is, it’s rarely customized to the needs of children with disabilities.
Many people have a preconceived notion that individuals with disabilities are asexual or nonsexual. Parents of children with disabilities often feel so anxious when it comes to their children growing up and having relationships. Many families live in denial as I did, thinking, “It will never happen to my child because they have a disability.” Or, because of a lack of education, parents do not know how to talk to their children
about body safety, secrets versus surprises, good touches, bad touches, boundaries, caring adults, etc. As parents, we provide the foundation for body safety and healthy relationships, tailoring the conversations to our child’s cognition level.
Without education, the child has no basic information or language to be able to know that abuse has happened or how to tell someone.
Currently, there is not a lot of education as to how to prevent abuse, what signs to look for, or what to do if abuse is suspected or a child ever discloses abuse has happened to them. I should say that education is available; it’s just not easily found nor freely given to parents and caregivers. Doctors don’t always have time to discuss this information with parents because they are often rushed. So, where are parents supposed to gain knowledge and resources? Many local, state, federal, national, and international organizations offer training classes for parents. Our nonprofit, Voices of Change 2018, will provide in-person and online courses to educate children, parents, and professionals. The courses are currently in development.
Once a parent is educated, we must educate our children and have continuous conversations with them. It is not a one-anddone conversation. We must also educate anyone who cares for them: neighbors, coaches, teachers, and clergy.
Nicole Moehring’s daughter and son, who has Fragile X Syndrome and autism, were both victims of sexual abuse. As a mother suffering through this unbelievable nightmare, Nicole witnessed extreme differences in the justice system regarding how her daughter was believed and treated well when her son was not. She also quickly recognized the distinct differences in recovery, trying to find support and resources. Nicole and her daughter Maci founded Voices of Change 2018 (VOC18), a nonprofit organization, to begin making much-needed change for children with disabilities and their families. VOC18 is a national organization piloting groundbreaking programs in Ohio. VOC18 is in the process of developing preventative education programs for children with disabilities while empowering parents and guardians. By sharing their lived experiences and through collaborations with other individuals, mental health professionals, law enforcement, and organizations, they are building a foundation of advocacy, abuse awareness, resources, and support for children with disabilities.
Seven Ways to Prepare a Special Needs Child for a New School Year
By Carol Tatom, BA.HSE, CHW
Starting or returning to school can be challenging for special needs families whose children often find comfort in predictable routines. In addition to having to adjust to a new schedule or routine from the summer, your child may be in a new classroom with new teachers and new peers.
The stressors of starting a new school year are often paired with anxiety as they try to maneuver through and understand new expectations and social dynamics presented to them. Staying on top of school preparation can help reduce some of the stress and anxiety.
Top ways to prepare for the new school year:
1. Identify your child’s special education team
Most schools will assign a case manager who can help you advocate for specific accommodations and resources in the classroom. Communicate with your child’s special education team before the school year starts so you can help fill the staff in on any specific needs or supports they may need. This information can also help teachers be more
prepared for the first day back to school as well, including having specific therapeutic items in their classrooms.
2. Develop an All-About-Me form for your child to present to their teachers on the first day
This personalized document can be tailored to your child's unique needs. It serves as a practical tool for teachers to establish a connection with their students during the transitional period of a new school year. If a teacher is already familiar with their interests and triggers, they can be more proactive in managing stress-induced behaviors. For instance, if a teacher knows that noisy environments are triggers, they can offer a quiet space or show them where it is located before a situation escalates.
3. Identify a buddy for your child so they won’t feel isolated on their first day
This can be especially helpful for students new to the school system and those transitioning to new schools. Having a friend to sit with on the bus or at lunch can
help ease anxiety. If you don’t know of any other families attending your child’s school, you can contact your school’s special education department to inquire about a sensory-friendly back-to-school event for families. Being able to connect with other families can also decrease anxiety and improve mental health for special needs parents who often feel isolated due to autism-related behaviors that may limit activities and social outings.
4. Create a Social Story about going back to school so your child will know what to expect
You can create your own social stories or download templates online to help spark creativity. Social Stories “provide social information in a simple visual format that explains what to expect and what constitutes appropriate behavior” (Smith & et al., 2021). Digital social stories provide greater options for families, and the images can be updated more easily to add additional school images or visuals quickly.
5. Request a tour of the school
You can request a private tour of the school so your child can get familiar with the building layout away from noisy crowds and be able to identify where their classes are located. Knowing where to go on that first day can help reduce any anxiety related to getting lost in the hallways.
6. Start your bedtime schedule a couple of weeks before the start of school.
This will help your child get used to going to bed on time in preparation for the school day. If you kept a loose schedule over the summer and didn’t adhere to a bedtime, trying to start a new bedtime routine and enforce it the night before the first day of school will bring challenges. The same is true for waking up. Getting into the habit of waking up early on school days will help make those morning routines easier to get used to.
7. Ensure your child has the device they use to communicate with at full charge
Many children with exceptional needs rely on tablets or AAC devices to be their words. If their device is not charged, they are left without a way to communicate their
needs. Check in with the teacher to see if you can leave a spare charger in the classroom for emergencies.
Going back to school doesn’t always have to be a stressful event. Identify your child's needs so you’ll know what to bring or advocate for. Meet with teachers in advance so you can identify who to go to if you have questions or concerns about their day. Use social stories to help your child learn what to expect during the school day. Remember to celebrate the tiny moments and accomplishments they make along their journey. When people say it takes a village to raise a child, they couldn’t be truer in the special needs communities! The collaboration of care between multiple modalities and sectors helps us fill in any gaps so our children can succeed in their studies.
References
Smith, E., Constantin, A., Johnson, H., & Brosnan, M. (2021). DigitallyMediated Social Stories Support Children on the Autism Spectrum Adapting to a Change in a 'Real-World' Context. Journal of autism and developmental disorders, 51(2), 514–526. https://doi.org/10.1007/s10803-020-04558-5
Carol Tatom, BA.HSE, CHW has a bachelor’s degree in human services and is a licensed community health worker in Texas. She is also an autism parent, advocate, and professional. Carol currently works at Life Skills Autism Academy, has served on the executive board for the Texas Society of Public Health Education, and has volunteered for the Dallas Chapter of Autism Speaks. Carol enjoys working with other autism families to help connect them to services, support, and resources in their region and to help bridge the gap that many families struggle with after receiving their initial autism diagnosis. You can connect with Carol online.
LINKEDIN www.linkedin.com/in/carol-t-baa07a152
SHAPING OUR FUTURE Finding Collaborative Pathways Through Occupational Therapy Evaluation
By Rose Adams, OTD, OTR/L
You are doing great! Now let’s talk…
Dear parents, you are doing great. As a parent myself, I find these few words comforting during challenging moments. Sometimes, we don’t feel like we’re doing great. We may feel like we’re just getting by. In these moments, we might need to have a conversation or an opportunity to collaborate with people who might share a different perspective on our child’s development and needs. One way is through an occupational therapy evaluation.
What is the open door?
The open door is a pathway by which parents and occupational therapy (OT) practitioners can share ideas, discuss goals, and collaborate during the occupational therapy evaluation process. Throughout my career, I have conducted many occupational therapy evaluations across various settings. I most enjoy conducting these evaluations in private practice settings and in the child’s home. I find these settings provide more time with families and a greater opportunity to welcome the open door. The home environment also provides a window into the child’s life, their space, and their domain.
Why is the open door important?
Many times, during evaluations of young children in the home, parents have many questions they need answers to. They often ask about their child’s development, the assessment tools being administered, and the implications of the OT evaluation. Other times, parents are concerned. They express concerns about their child’s performance and participation in school
(if enrolled), and they’re curious about what they can do to support their child. The open door is important because it presents an opportunity for the OT and the parents to discover new questions and provide answers together. This co-discovery is the key to the open door (Novak & Honan, 2019).
Take advantage of the opportunity to collaborate
In my Exceptional Needs Today Issue 12 article, Parents as Partners, I talk about the crucial role parents have as valuable members of their child’s care team (Adams, 2023). Parents are, in fact, experts. When I am invited into a parent’s home to conduct an evaluation for their child, I look for my teammates, the child included! The child and parent perspective helps the OT practitioner obtain information that may help to determine any supports that may be needed. During the evaluation, your OT practitioner appreciates your presence, time, knowledge, input, feedback, and more! No need to bring your A-game; just bring yourself. Collaborating with your OT practitioner during an evaluation at home may also require a deeper understanding of the goals for the evaluation.
The OT evaluation: Understanding goals
A primary goal for your child’s OT evaluation might be helping identify barriers that may make it difficult to participate or engage in their life’s activities or occupations. Some examples of a child’s occupations might include play, self-help skills, learning in school, and interacting with peers. Other key elements include strengths, interests, and values. We are also curious about what your goals are and what goals you
may have for your child. We would like to know if your child has any goals to share. Collaboration with you, your child, siblings, family members, and other people who might be able to provide valuable input is important (Mas et al., 2019). We essentially need all hands on deck! Don’t be afraid to share ideas, observations, goals, perspectives, and your home. Another way to collaborate is by helping your OT practitioner prepare for your child’s evaluation at home.
Helping your child’s OT prepare for the evaluation
Your child’s OT may invite you to participate in an interview or conversation about your concerns, goals, the child’s developmental history, and more. During this conversation, ask about any items that may be needed for the assessment. It may be nothing at all or simply a table and chair if your OT will be evaluating your child’s fine motor skills. You can also ask about what types of assessments will be administered and what your child should expect. I like to ask beforehand about your child’s interests. I use this information to help bring
PARENTAL SUPPORT
the fun! For example, if a parent shares that their child is into music, I’d like to know about the types of songs and music they like. If they share that it’s a Paw Patrol kind of year, I’ve got my Paw Patrols on standby! Lastly, just be your wonderful self and share space with us.
Preparing for the next steps
After your child’s evaluation, your OT may get back to you to share the results and recommendations. In most instances, a determination for services may not be made during this conversation, as this is usually determined later during your initial meeting with the committee on preschool or special education (CPSE or CSE). However, this follow-up conversation or meeting is another opportunity to collaborate and discuss any questions or thoughts that you may have. Remember, you’re already in the door; invite and welcome conversations and share your perspectives and insight.
Key takeaways:
• OT practitioners welcome the open door to collaborating with parents.
• Your input, perspective, goals, and ideas are valued.
• You’ve got questions; we can answer them together.
• You and your child are a part of the team.
Thank you for being amazing and for supporting your child’s growth and development through an OT evaluation. Thank you for meeting us at the open door!
References
Adams, R. (2023, March). Parents as partners: Promoting collaboration between home and school. Exceptional Needs Today, 12, 10-13. https:// www.exceptionalneedstoday.com/
Mas, J.M., Dunst, C. J., Balcells-Balcells, A., Garcia-Ventura, S., Giné, C., & Cañadas, M. (2019). Family-centered practices and the parental well-being of young children with disabilities and developmental delay. Research in Developmental Disabilities, 94, 103495. https://doi.org/10.1016/j. ridd.2019.103495
Novak, I., & Honan, I. (2019). Effectiveness of paediatric occupational therapy for children with disabilities: A systematic review. Australian Occupational Therapy Journal, 66, 258-273. https://doi.org/10.1111/14401630.12573
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.
So many of the calls I receive from panicked parents include, “My son is such a sweet, gentle person, and they are trying to make it sound like he is a predator.” And I reply, “I understand.”
Having spent over 15 years representing and advocating for autistic clients, I know too well how the majority are kind, naïve, gentle, loving human beings. They are not their worst behavior, even though what they may do can appear gruesome, predatory, and downright unthinkable to many of us.
In my years of carrying out my work with the autistic community, I believe the greatest misnomer is the belief that unacceptable and perceived “criminal” behavior defines a person. From my professional and personal experience with autistics, I can confidently state the “act” committed is not a reflection of the person but rather indicates characteristics of a “neurodevelopmental disorder caused by differences in that child’s brain”—namely autism. And it is high time we make that distinction and understand that autistic defendants differ from criminal defendants. Because as long as the criminal justice system views and treats them as criminal defendants, it transforms them into victims of a system that is ill-equipped to handle these defendants’ special needs. Autistic defendants simply become another one of the System’s statistics.
In raising an autistic son, I learned early on that socially offensive behavior may be a symptom of autism. And that such behavior was a call to action. As parents, professionals, and caregivers, we must learn to pay close attention to objectionable behavior because it is a red flag. Autistics often lack the required communication skills to interpret and use nonverbal and verbal communication. Instead, they attempt to “shout out” with actions, not words.
From a holistic perspective, we, as a society, need to look at the whole person. Who is this individual who committed what is termed a heinous act? And why? We need the prosecutors and courts to take off their blinders and see the person—not only the crime. My passion for altering the ignorant and distorted perception of “criminal” autistics—those arrested and convicted—motivates me to carry out the work I do as an autism lawyer and expert.
The problem
Many autistic people are very vulnerable because of their naivety, desperate need to be liked, and their tendency to trust most people while unable to interpret social or nonverbal cues. These qualities allow them to become the perfect targets for manipulation and for being used as the fall guy for others’ criminal acts. And their tendency to be very curious gets them labeled as stalkers or charged with harassment. For these reasons, during my early years of this work, many of my clients were charged with stalking and harassment or were set up for selling drugs.
However, as autistic children continued to age, the nature of the crimes changed. As young autistic adults were left to manage or live on their own, many of them took to the internet to fill their time and to appease their curiosity. And, as teens and older, sex increasingly became a major focus in their lives. For some autistic people, the internet and sex can be a deadly combination. In exploring sex online, many, primarily male, autistic adults unknowingly select a pop-up that transports them to a child pornography website and/or chat room. That’s why the calls I began receiving from panicstricken parents and continue to receive now open with, “My son has been arrested for downloading child pornography,” and again, I reply, “I understand.”
For some autistic people, the internet and sex can be a deadly combination.
The real problem is that sex cases are far more serious, the stakes are much higher, and sympathy for the offender is lacking. More than ever, the emphasis here is on the child victim, and the autistic defendant is assumed to be a predator. Prosecutors and courts are reluctant to entertain much of a defense. They are understandably concerned with the safety and manipulation of the innocent children portrayed in online pornographic images. Yet again, for me, the issue we face for the alleged perpetrator remains the same. We need to examine what is behind this often assumed “perverted” act. Yet, it is a far more difficult sell.
The proposed solution
We cannot sympathize with something we do not understand. Unraveling the behind-the-scenes cause for the conduct,
SAFETY SOLUTIONS
however distasteful, leads to empathy and compassion for the autistic individual. The only way out of re-victimizing the autistic defendant is through in-depth education and understanding. This cannot be accomplished by simply handing out printed books or articles about autism. It is far more complicated than that.
As a neurodevelopmental disorder that varies with every individual, autism cannot be adequately understood via a blueprint. Nor can the behavior that accompanies autism. The answer lies in hands-on workshops and instructional classes. Viewing the conduct of an autistic individual through the autism lens leads to greater acceptance and a more merciful outcome. To achieve this, we must be willing to challenge our misguided beliefs and uncover what the behavior is telling us.
Carol Weinman, Esq., CAS is an attorney, autism expert, world-renowned speaker, consultant, trainer, author, and parent. Her focus as a lawyer has been in 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-a-kind 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 currently developing a school curriculum and serves on the Advisory Board of the U.S. Autism Association. �� carolweinman.com
A MOVING INTERVIEW WITH EXCEPTIONAL PARENT AND MIRACLE PROJECT FOUNDER ELAINE HALL
By Ron Sandison, MDiv
"Creative dramatics can be a bridge between the outside world and the inner world. We used what I call ‘rehearsing for life’ with my son whenever we had something new that we needed to do, whether it was going on an airplane or to the doctor.”
—Elaine Hall
Iwas excited to meet Elaine Hall, the founder of the Miracle Project, a few months ago. I presented a breakout session at the U.S. Autism World Autism Conference in Loveland, Colorado, on Overcoming a Hopeless Complex: Autism & Mental Health. Elaine presented Autism and the Arts. I enjoyed listening to her perspective as a life coach for adult actors with autism and as a mom whose son, Neal, is on the spectrum. Not only did I glean insight into Hollywood, but I was also eager to interview Elaine regarding her parental journey and knowledge of acting and autism.
Why did you decide to adopt a child from Russia?
When I learned I was unable to give birth biologically, I was devastated. I have always wanted to have children; in fact, I wanted to be like the old woman who lives in a shoe with so many children that she didn't know what to do! I always knew I wanted children, some biologically and some adopted, so I always anticipated adoption but never considered I wouldn’t be able to have a biological child. My sadness was eased when I learned about the possibility of adopting a child from Russia, as my grandfather came from Russia and was an orphan. I thought, if I couldn't give birth biologically to a child who might have my grandmother's sparkly blue eyes or my father's wonderful dance ability, I could have a child from where my grandfather was from—my heritage. That's why I decided to adopt a child from Russia.
What lessons has Neal taught you about life and living in the moment?
Neal has been my greatest teacher. He's taught me how to be present, how to be calm. He's taught me how I need to profoundly take care of myself to be my best self with him. When I was going through my hardest, most difficult challenges in life, I knew I had to calm my own neurosystem to be the best possible mother for him. He's also taught me courage, how to overcome obstacles, and how to keep showing up even when things are rough and tough. He's really an extraordinary young man with a strong will to be the best he can be, and he has motivated me to be the best person I can be.
As a creative thinker, what were some ways you connected with Neal and entered his world?
Well, it happened very early on. Neal would spin in circles, and I would spin with him. We'd make it Ring a Ring o’ Roses. He would bang, open, and close drawers and cabinets, and I would turn that into peekaboo. We’d bang and open things together to make noise. I entered his world to connect rather than pull him into my own, which seemed to cause him anxiety.
I am thinking of one of the most beautiful times. When Neal was around three years old, whenever we would take a walk, he would stop at every single tire of every single car. We wouldn't be able to get even a block without having to
stop maybe ten times. At that time, I was kind of a Type A personality. I was in a hurry, so I’d say, “Come on! We’ve got to go! Let's keep walking!” I had it on my agenda to get to the store.
Finally, one time, I sat down beside him when he was looking into a tire, and I realized he was not looking into the tire at all! Neal was looking at the hubcap—the way the sun reflected on it was like a kaleidoscope of light and color! I asked Neal, “Is this what you're looking at?” He nodded yes. “Were you trying to show me these beautiful colors in the hubcap?” He looked up at me and nodded again. We looked at it for another five to 10 minutes, and then we got up and walked to the store. After that, he never needed to stop and look again at those hubcaps. He just wanted me to share in his experience of his beautiful world.
How has spirituality empowered you as a mother?
Well, spiritually, my sense of something greater than myself is really my anchor. It's my go-to for my own strength and comfort, and I've always been that way. As a small child, I used to talk to the Moon, and I would talk to the God of my understanding. I had my own world. I’m neurodivergent myself, and I lived profoundly in my own world as a child. I talked to spirits; I saw auras. It was really where I felt most at home.
Being able to listen to a voice inside of me that was calm and knowing even when I was disgruntled or anxious, just knowing there was this higher voice inside of me, allowed me to show up as a mom and always be present for Neal. One of the things I vowed when I became a mother was that I knew I was going to make mistakes, but if ever something inside me, my inner voice, said something and I ignored it, that would be bigger than a mistake. So, I vowed to always listen to that small voice, so I had no regrets. And the times I didn’t listen to that tiny voice were times when things really went awry. I believe this voice is my inner guide in my spirit, and it has led me to every single thing in my life.
How can parents use the arts to enter their child’s world?
Look at what your child is doing, seeing without judgment. Allow yourself to see the world from their perspective, even if it's something you don't quite understand. Be curious. Enter their world. Use movement—if they flap their hands (Elaine begins flapping her hands in front of her eyes), do it yourself and see what you get from that. Maybe become birds together and pretend to fly around the room. Create collages together if your child is non-speaking. Take out magazine pages, be curious about the different pictures, and create questions your child can answer by pointing to or choosing a certain picture. Create a story with the magazine pictures with a beginning, middle, and end.
Creative dramatics can be a bridge between the outside world and the inner world. We used what I call “rehearsing for life” with my son whenever we had something new we needed to
do, whether it was going on an airplane or to the doctor. We would rehearse it; we would practice it. We would set up the whole playroom as if it were a doctor's office and act out a visit before ever going to the doctor’s office. I would take a photograph of the doctor’s office before my son went, so he already had an idea of the environment. Before traveling on an airplane, we practiced everything from packing our suitcase to carrying it to going through security, taking our shoes off, and putting our backpacks on the conveyor belt. We’d practice everything before we ever made it on an airplane.
So, rehearse for life and practice things in life. Use acting, improvisation, and music. My son expresses feelings by finding songs on YouTube that can express his emotions. Start singing a song and leave out one word, then let your child fill in that word. There are so many ways to be creative. In my book, Now I See the Moon, there are lots of examples of ways we use the arts for Neal. In the Seven Keys to Unlock Autism, a textbook I cowrote, educators are shown how they can use the arts in their classrooms.
How has Autism: The Musical transformed people’s perspectives of autism, and how has the film changed the media and movie industry’s perception?
I've been told there is a big difference in people’s perceptions of autism pre-Autism: The Musical compared to post-Autism: The Musical. Tricia Regan, the director of Autism: The Musical, said she wanted people to realize these were not just kids with a diagnosis; they were somebody’s child. She believed the film was not about autism but about love. I (and thousands of others) agree with her. Autism: The Musical showed the ability within the disability of autism. It defied the myth that children on the spectrum don't want to be social. They can perform, they can participate with others, they can be part of a group, they can take direction, they can learn lines, and they can
Allow yourself to see the world from your child's perspective, even if it's something you don't quite understand. Be curious. Enter their world.
express themselves creatively. They can express their thoughts and feelings, and they are highly sensitive.
I think the film really debunked a lot of myths about what people thought autism was. By airing on HBO, we’ve brought autism into living rooms. When I spoke at the United Nations,
we gave a hundred DVDs (this was before streaming was available) that were distributed all over the world. I am told viewing the DVDs really changed people’s perspective of what’s possible for people with autism. The film also elevated media to have more authentic representation and storytelling so viewers can see kids on the spectrum acting, singing, and dancing. Today, there are all kinds of TV shows that star individuals on the spectrum; many of them feature kids from The Miracle Project. I have done a lot of consulting and acting coaching on these shows, so the media is changing.
Share some amazing experiences you’ve had with founding The Miracle Project.
There's just been so many incredible experiences. I've seen children say their first words on our stages. I've experienced non-speaking multimodality communicators using AAC to write original films and lyrics to songs. I've experienced 17-year-olds who never had a friend now have an active, vibrant social life. I've experienced a child who screamed all the time one day, as she puts it, had “opera come out of her mouth.” Today, she sings opera and has performed at the UN, China, and the Pantages Theater in Los Angeles. I've witnessed so many amazing things.
Next to adopting Neal and marrying my husband, creating The Miracle Project is definitely one of my greatest blessings.
We've written and produced over 30 original musicals, many of which are available to be licensed and produced in schools and theaters. Young people who started out as volunteers have gone on to careers in occupational therapy and speech therapy or become psychologists and therapists. One volunteer, Hannah Warren, is now the clinical supervisor and program director of The Miracle Project! Every single day, I have an amazing experience—literally, every single day.
What advice would you give young adults who have autism and want a career in acting?
Study, train, and learn. Don't expect to just show up! Take an improv class, find opportunities to practice skits with friends, and be yourself above all. Don't mask; don't try to be someone other than you. We neurodivergent folk have been acting our entire lives to make the real world make sense. I have found that being my authentic self and really allowing myself to be loved and appreciated for who I truly am is my gift, so allow yourself to shine. Surround yourself with people who love you, appreciate you, and accept you.
What lessons have you learned from the young adults you work with as a life coach?
As a neurodivergent adult, I have learned to re-parent myself, to love and appreciate my intense sensitivity, my challenges
with linear thinking, and my different way of being in the world. I've imagined my now adult self meeting the anxious little girl I was, and in my imagination, I sit with her and bring her acceptance and love—just as I did for Neal and all my students. This is one of the practices I use as a life coach with my adult clients as well as young adults and teens. I help them revisit experiences in their lives where they judged themselves or were harshly judged by others and reconnect with their wholeness, essence, and love. I help remind them to accept and appreciate themselves for exactly who they are: a perfect being who has disabilities fitting in the neurotypical world. I help them see they belong.
What three tips would you give to parents whose child was recently diagnosed with autism and who fear the unknown?
My three tips:
• You're not alone.
• Your world may get smaller, but it gets richer.
• Always be willing to ask for help because there is always someone who's been one step ahead of you.
It's a challenging journey, but it's an extraordinary journey. When Neal was first diagnosed, a rabbi’s wife gave me this beautiful story, Welcome to Holland, by Emily Pearl Kingsley. It talks about when you give birth to a child, or you're pregnant, you have this vision: you will be going to Italy. You can't wait to taste the gelato, eat the pasta, and walk through to see the antiquities. You anticipate how amazing it's going to be to go to Italy. Then you're on an airplane, and you're about to land, and you think it’s Italy, but actually, it’s Holland. You get off the plane and say, “No, this isn’t Italy. I want to be in Italy!” You’re really upset at first, but then you realize, “Wow, Holland is not so bad. It's kind of pleasant here.” You accept you're in Holland.
That's what she wrote about her son who has Down syndrome, explaining what it's like when you're a mom and you find out your child has a disability. I love that; it's very sweet and beautiful. But when I read it, there was always something in me that didn't resonate with it. But now I know exactly what it was like: I got to Italy. I have an autistic son, but I got to Italy. It's that part of Italy that tourists never get to see. It's that narrow road that is hidden but there. It's the best-tasting, most incredible gelato you've ever tasted in your life. The music is so vibrant, the people you see are the most loving, accepting, appreciative, welcoming humans on the planet, and the pasta! Oh my gosh, the pasta—it is like nectar from heaven. So, I think we will arrive in Italy. It’s not without the yelling and screaming, that kind of disruption, but it is the most extraordinary part of experiencing.
What advice would you give to teachers and educators who desire to connect with their students who are on the autism spectrum?
Not to be self-serving, and to read my book, The Seven Keys
to Unlocking Autism. It has lots of good advice. Be curious, listen, and keep your own neurological system calm. Don't be judgmental. Allow yourself to be taught by your students and take away your expectations of what normal is and how a child should behave. Include them in conversations, whether they use a device to speak or use pictures or music. Allow them to be themself. Everyone learns differently. Allow yourself to see how this child responds to your type of teaching. Do they need directions written down? Do they need things broken down into small, manageable tasks that make sense? Be curious, be mindful. Read Barry Prizant’s book Uniquely Human, Dr. Steven Shore's books, and Dr. Temple Grandin's book.
Please share with us a humorous story in your journey with autism.
We gave Neal some autonomy at one point and allowed him to walk around the neighborhood without us. He had a bracelet that showed where he was located and a phone so we could keep tabs on where he was, so he was allowed to walk where he wanted. Neal loves to smell flowers and bees. He can actually pick up a bee, smell it, and let it fly away. He doesn't get stung. He's kind of like the Saint Francis of bees—he's the bee whisperer. He was walking one day on his own, and he was about 14 or 15 years old at the time. He went into a neighbor's yard because they had a beautiful bush with purple flowers, and he wanted to smell the flowers and look at the bees. The homeowner called the police; we didn't know this, and the next thing you know, Neal's at our door, and there's two police officers with him.
Neal had walked them back to the house. They were very kind, and I brought him inside. We talked to the police and found out
what happened. We gave Neal a long time to talk about this. He knows better than to go into people's yards. We asked him, “Neal, now that this happened, we need to know what you will do next time that you're walking,” and he typed, “Hide.” “Neal,” we said, “that's not the point! You’re not supposed to go in yards!” We don't let him walk on his own anymore, but he still has his autonomy as we follow far behind. This was just one case of Neal being very clever.
What are some cool projects you are currently working on?
So many cool projects! We're in the midst of creating an original musical that we will be performing at the Wallace Center for Performing Arts in May 2024. We are working on a music video created by and starring multimodality communicators who use AAC to communicate. I personally am working on the promotion of a film I worked on last year called Ezra, which stars a 12-year-old autistic youth. I'm on the board of the ReelAbilities Film Festival, which is going to be in New York in April. There are so many amazing things happening. The coolest is I’m in development of adapting my memoir, Now I See the Moon, which was selected by the United Nations for World Autism Awareness Day to be made into a possible mini-series.
How would you like to see traditional therapy for autism change, and how can therapy better prepare people with autism for employment and independence?
I'd like to see traditional therapy for autism change by primarily being curious and respectful of the autistic person and by seeing autism and neurodivergence as a different way of being. There are all kinds of minds. Honor and respect the neurology
Elaine Hall
of neurodivergent individuals and autistic people. See, it's not a behavior challenge, but that challenging behavior is an outcome of being misunderstood or of something causing pain. As Dr. Barry Prizant says, “All behavior is communication.” Really see the child, the young adult, and the adults. Really look at the whole person, the movements patterning their thought process. Be curious, be reflective, and understand their relationships. Relationships and trust are critical to any kind of intervention. Use the arts as an intervention.
Follow the person's interests and passions. Don't call them obsessions! We wrote a musical a couple of years ago called Journey to Namuh. I won't give it away, but you can find it on YouTube. In it, a group of neurodiverse students who are in a very controlling social skills class are drawn into the magical land of Namuh. In this land, there are no “No’s.” In Namuh, what others see as an “obsession" is actually enthusiasm. Enthusiasm and passion can be helpful for employment and independence.
Start teaching independence really young. We started Neal at a young age doing chores around the house. He was doing laundry at eight, taking out the trash, and setting the table. Start giving chores, something the child can have pride over. It's really hard for me when I see parents who have children of 14 or 15 who have never lifted a finger. Dr. Temple Grandin speaks about this and the importance of not being babied. When I was a little kid, I wrote stories and plays. Instead of having friends at recess, I would direct the kids on how to be different characters. That prepared me for my career, so I really think about every aspect as an opportunity for independence and an avenue for employment.
Elaine, also known as “Coach E,” has been referenced by The New York Times as “the child whisperer” and is a pioneer in using theater and movement practices as a portal for connection among individuals with autism and related disabilities. Elaine was a top Hollywood acting coach when her adopted son was diagnosed with severe autism. When traditional behavioral therapies did not work for him, she developed an innovative methodology combining mindfulness and the expressive arts with what she was learning from autism experts Dr. Stanley Greenspan, Dr. Ricki Robinson, and Dr. Barry Prizant. These methods are chronicled in her book, Seven Keys to Unlock Autism: Making Miracles in the Classroom, which is used as a textbook in several universities, including Brown University. Elaine’s memoir, Now I See the Moon: A Mother, A Son, A Miracle, was selected by the United Nations for World Autism Awareness Day, where she has been a featured speaker. Elaine has been lauded in The New York Times and The Wall Street Journal, as well as on CNN, CBS, and the Oprah Winfrey Network. The Emmy Award-winning HBO documentary AUTISM: The Musical profiles Elaine’s early work with The Miracle Project, which has since been deemed evidence-based and is now being replicated nationally and internationally. �� elaine-hall.com �� themiracleproject.org
Ron Sandison, MDiv., works full-time in the medical field and is a Professor of Theology at Destiny School of Ministry. He is an advisory board member of the Autism Society Faith Initiative of the Autism Society of America, the Art of Autism, and the Els Center of Excellence. Ron holds a Master of Divinity from Oral Roberts University and is the author of A Parent’s Guide to Autism: Practical Advice. Biblical Wisdom was published by Siloam, and it is about Thought, Choice, and Action. He has memorized over 15,000 Scriptures, including 22 complete books of the New Testament. Ron speaks at over 70 events a year, including 20-plus education conferences. Ron and his wife, Kristen, reside in Rochester Hills, MI, with their daughter, Makayla. �� spectruminclusion.com SQUARE-FACEBOOK facebook.com/SpectrumRonSandison
✉ sandison456@hotmail.com
A Faith-Integrated Guide from Personal and Professional Experience
This book is for anyone who wants to better understand autism or neurodiversity from a family that is living it or for anyone who wants to improve their ability to serve, support, advocate or include those with autism.
Embracing the Autism Spectrum: Finding Joy & Hope Navigating the NeuroDiverse Family Journey is a gift to any parent that has ever felt alone on this journey. This is an honest and intimate account of how a diagnosis can alter your expectations of the world and yet help you see more clearly Any family that has a member that has a neurodiverse diagnosis will find refuge in these pages
I am honored that Dr. Stephanie asked me to review this book. I found myself reading the entire book and literally laughed, cried, raged and rejoiced for Stephanie and her family This is a must read for every Christian family who has a special needs child, especially on the autism spectrum I give my highest recommendation both clinically and spiritually for this book.
F G HUTCHINGS III Ed D, LPC, LMFT Licensed Psychologist
Embracing the Autism Spectrum: Finding Joy & Hope Navigating the NeuroDiverse Family Journey walks you through the challenges the family faced in a neurodiverse family system, during and after diagnosis. As a Speech Therapist who has worked with children of all ages that are on the spectrum, early diagnosis and early intervention is imperative for the child’s future success. Parents are struggling and they need support from the school district, and they need to be able to trust the professionals as well. An open relationship between parents and school personnel with ongoing dialog will only help the child succeed even more Education is key, as well as validation for the journey on which people find themselves. I hope this book is a lifegiving addition to that journey.
RELLER
CAROL
Retired Speech Language Pathologist
A Family's Dream of Independence for Special Needs Daughter Comes True
By Cynthia C. Adams RN, MSN, EdD
After years of infertility, we flew to Medellin, Colombia, to meet our three-month-old baby girl. I was immediately mesmerized by her dark brown eyes staring back at us and startled by how much we loved her in those first few moments together.
At nine months, I noticed Hanna kept her right arm at her side in the highchair. The pediatric neurologist diagnosed a focal injury in her left frontal lobe, right-sided hemiplegia, and cerebral palsy. She advised us to treat Hanna as normally as possible. We left the office that day with many unanswered questions and gut-wrenching fear.
The Birth to 3 program helped us navigate the early days, and then we became frequent flyers at Shriners Hospital for Children in Springfield, Massachusetts. I soon recognized we had a fiercely determined daughter who was taking us on an unknown roller coaster ride. Buckle up!
The years brought leg and arm braces, seizures, ferocious temper tantrums, and too many difficult school meetings. The speech, occupational, and physical therapists added endless homework addressing intellectual and physical disabilities. I was exhausted. My full-time nursing position was the easy part of my day
In high school, Hanna ran cross country and often finished last. She slowly improved her personal best time by seconds each race thanks to two amazing coaches who worked with her to set personal goals and achieve them. John and I arranged our work schedules so we could attend every meet and cheer her on. She joined the drama club and enthusiastically bellowed out the songs of The Music Man while I was the mom chewing her nails, worried my differently-abled daughter in a full-length costume and low heels might fall while dancing to Ya Got Trouble in River City.
Hanna joined her classmates in the Threshold Program at Lesley University, learning to face their disabilities and build
on STRENGTHS. She grew in confidence and her ability to problem-solve independently. Hanna graduated in 2013 and attended a one-year Transition Program designed for Threshold graduates. She joined three classmates to share an apartment and meet with an advisor once a month. Hanna slowly mastered the skills of living independently, paying her own bills, preparing meals, and resolving roommate conflicts. During the transition year, Hanna secured a full-time position as a certified teacher in early childhood education, successfully co-teaching a classroom of toddlers.
Hanna continued her athletic pursuits, running the Falmouth Road Race and eventually the Marine Corps Marathon in 2015. Beaming with pride at the finish line, I looked at her face with those fierce brown eyes and wept as the handsome marine placed the medal around her neck. In my WILDEST dreams, I would have never thought my maximally serviced special needs daughter could live independently, work full-time, pay her own bills, and finish a marathon! I was speechless. Yes, we showed up as parents and gave it our best, but Hanna surpassed every dream we ever dared to let ourselves hope for.
In April 2024, Hanna ran her sixth Boston Marathon as Captain of the Adaptive Division Team for the Doug Flutie Jr Foundation for Autism. Frequently chosen to speak on Boston Athletic Association and Flutie Foundation Panels, Hanna explains that running is the place where she feels strong, confident, and capable. She advises similar athletes to always believe in themselves, chase their dreams, and follow their passions. As a mom, I stand in awe of her courage and resilience. I am humbled to watch my 30-year-old daughter inspire other young adults with challenges to focus on the desired result and less on the obstacles. Looking back on years of sacrifice and hard work, I realize that raising Hanna was one of the greatest investments of my life.
Cynthia C. Adams, RN, MSN, EdD, retired from her position as Director of Nursing at Capital Community College in Hartford, Connecticut, in 2017. She lives in Granby, Connecticut, with her husband, John, and their two chocolate labs. Cynthia and John raised two children in Brooklyn, New York, and Somerville, Massachusetts. She has published in the American Journal of Nursing, Cancer Nursing, Clinical Journal of Oncology, Illness, Crisis & Loss, and Advance for Nursing. Cynthia enjoys running, skiing, and time on Cape Cod with her growing family
ALL THINGS OT How Do You Start Building Interoceptive Awareness?
By Laura A. Ryan, OT, OTR, OTD
Have you ever had a “gut” feeling about someone or something? Experienced a tingling in your neck that indicates someone is approaching you from behind? Or perhaps a rumble in your belly, one of the most telling signs it’s noon and you’re hungry? These signals from your body are excellent examples of interoception.
Interoception is the perception of sensations from inside the body and includes the perception of physical sensations related to internal organ functions such as heartbeat, respiration, and satiety, as well as the autonomic nervous system related to emotions (Price & Hooven, 2018). Interoception is now considered the eighth sensory system, along with the visual, auditory, olfactory, tactile, taste, vestibular (balance), and proprioception (sense of the joints of the body) senses. Interoception allows us to feel what is happening inside our body to then make important choices to keep us feeling safe, connected to our social community, and keep our bodies working efficiently. These feelings can be related to a body sense, such as a rumbling stomach indicating hunger, or an emotional sense, such as when your stomach drops when you are disappointed.
The concept of interoception was first created by a physician in the early 1900s and, more recently, further explored by a neuroscientist in the early 2000s. Interoception has gained speed in more recent years due to the work of an occupational therapist named Kelly Mahler. Kelly has written a book and created an interoception curriculum that is being adopted by occupational therapy practitioners working with clients who are neurodivergent or have trauma histories in schools, outpatient clinics, therapeutic settings, and more. Kelly writes,” ...the interoceptive system helps us feel many important sensations such as pain, body temperature, itch, sexual arousal, hunger, thirst, heart rate, breathing rate, muscle tension…”
The ability to discern feelings that can be ambiguous allows us to assess our comfort in a situation and make decisions that can potentially impact our safety and well-being. Additionally, interoception plays a pivotal role in how we feel our emotions. Sensing how our body is feeling during a moving experience allows us to identify which emotion is taking place. Most recently, Kelly has offered information on the role of interoception with toileting and feeding. As you can see, interoception is present in all parts of our lives!
So, how do you start building interoceptive awareness? Firstly, practicing mindfulness is a very important component in building interoceptive awareness. One must be cognizant of the potentially fleeting and abstract feelings that occur during an experience to make sense of them. Another important practice in building interoceptive awareness is to be genuinely curious about another’s experience. Asking questions or for more detail is essential in building one’s perception of one's feelings and creates a space for affirmation and solutions. Often, making space for a conversation and asking the child, “Tell me more,” reveals important information as to how the child is experiencing their world and can give you pivotal information to work with.
Developing interoceptive awareness can begin at a very early age with the validation of sensory experiences through communication around those experiences. For example, although you may be warm if your child is shivering because they are cold, it is helpful to support their experience by acknowledging that they are cold and offering a solution. For example, you could say, “It looks like you are a little cold because your arms have goosebumps! Would you like a sweatshirt?” That sentence could build interoceptive awareness by alerting them to their goosebumps, which are a concrete sign of being cold, give them descriptive language
One must be cognizant of the potentially fleeting and abstract feelings that occur during an experience in order to make sense of them.
for the next time they are cold (goosebumps could be a new word!), and help them problem solve (they need a sweatshirt).
Additionally, with that interchange, you have built a connection with your child. In the future, they can then build on this simple exchange to better identify the body signs that indicate their feelings, convey that feeling by mimicking your words, and build self-direction and independence by getting some warmer clothes.
Kelly Mahler’s social media is an informative resource for general information on interoception, activities to address interoception, and specific information on specific areas, such as toileting and feeding, that can be potentially impacted by reduced interoceptive awareness. In February, Mahler posted interoception activities for each day of the month. Her postings included an activity, a resource such as a body check chart, and a set of curious questions that can lead a conversation around the activity.
Lastly, there are many wonderful books for young children that make learning about interoception fun. My Body Sends a Signal and Listening to My Body are storybooks that isolate
specific feelings and the body signs that accompany those feelings through an engaging story and offer strategies for big feelings such as excitement and fear. For older children, the book Interoception: How I Feel: Sensing my World from the Inside Out is helpful. This book delves deeper into the specific soft tissue parts of the body that send out interoception signals and some engaging activities to practice the art of listening to the body.
One of the most important things to remember is that an individual’s interoceptive experience is unique and valid. We cannot perceive how another is feeling physically or emotionally, so we must always support someone’s experience as correct, expected, and authentic. Mahler emphasizes the importance of affirmation as she concludes each activity with a reminder that an individual’s personal experience and feelings must always be honored.
References
Koscinski, C. N. (2018). Interoception, how I feel: Sensing my world from the inside out. Martin Publishing Services.
Mahler, K. (2017). Interoception: the eighth sensory system. AAPC Publishing. Kelly Mahler (n.d.). Kelly Mahler. Facebook. Retrieved November 28, 2022 from https://www.facebook.com/kellymahler
Price, C & Hooven, C. (2018). Interoceptive awareness skills for emotion regulation: theory and approach of mindful awareness in body-oriented therapy (MABT). Frontiers in Psychology 9. 10.3389/fpsyg.2018.00798
References
Garcia G. & Hui Tan, Y (2017). Listening to my body. Skinned Knee Publishing
Maguire, N. (2020). My body sends a signal: Helping kids recognize emotions and express feelings. VLB Publishing.
Kelly Mahler-Facebook
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
Understanding Autism Movie Shines a Valuable Light on Neurodiversity
By Ron Sandison, MDiv
There is a lot of misunderstanding around autism, and through a more thorough understanding of neurodiversity, we can reduce the shame and stigma surrounding them.
— Scott Steindorff, Movie Producer —
Iwas excited to interview Hollywood director and producer Scott Steindorff and watch his new documentary Understanding Autism, which premiered on PBS in April 2024. Scott worked with actors Scarlett Johansson, Matthew McConaughey, Natalie Portman, Sofia Vergara, and Robert Downey Jr. He is the executive producer of HBO’s Emmy-nominated Station Eleven and Golden Globe winner for Empire Falls. He was diagnosed as a child with attention-deficit/hyperactivity disorder (ADHD) and as an adult with autism.
Understanding Autism was filmed in 20 cities throughout the U.S. and U.K. Scott and his team interviewed the world's top researchers, scientists, doctors, psychologists, and autistic children and adults across the spectrum. I loved the documentary’s storytelling approach to creating inclusion. I also appreciated hearing about Scott’s challenges with autism and his career as a movie and TV producer. Below, I share the contents of our interview.
What were some challenges you experienced as a child with autism?
The biggest challenge I had as a child and still have as an adult is motor skills. I don’t have the ability to put things together like toys or build things. My father was a well-known builder in the community. In the seventh grade, I built a bench for shop class, and I got an F in the class. I was embarrassed, and my father was embarrassed because I could not process mechanical activities. I am left-handed, write upside down, and can’t fix cars.
In Understanding Autism, you include many majestic nature scenes, such as the Rocky Mountains, where you interviewed Dr. Temple Grandin, or the beaches of Hawaii with the Autism Moms of Kona. How has autism enabled you to connect with nature and animals?
I was raised on a large parcel of land in a little town in Minnesota, and that was my safe place. I love to be in the trees. We on the spectrum have a high sense of ability for smells and visual experiences, so for me, running in the pine trees and living on the land brought me peace. It is important for us to connect with nature and not be limited by confined spaces to get outside.
My “autistic joy” was running track and cross-country. You share in Understanding Autism that your special interest, or autistic joy, was skiing; how did your passion prepare you for life and empower you to develop other skills?
Like you, I was a fast runner and athletic. I started skiing at age four, and it still is my autistic joy. I trained and competed on the US Freestyle Ski Team and traveled the world. Again, skiing
involves nature, on the mountain and in the snow, and I loved every moment of it.
At what age were you diagnosed with autism? What events lead to your diagnosis of autism as an adult? How did you respond when your daughter Jamie told you she thought you had autism?
I look back on my life, and in fourth grade at age 10, the teacher took me aside because I was bullied terribly and had difficulty learning and said, “You stare into space, you can’t make eye contact, you have difficulty communicating and socializing, and you seem aloof.” The teacher thought I was using drugs at age 10. These features today would lead to an autism diagnosis. At age 23, I was diagnosed with ADHD and was resistant; I thought I could get organized, I could do my planning, and all I needed to do was get a day planner, but I had never been able to do it.
In my 40s, after my youngest daughter Jamie was struggling and diagnosed with ADHD and on the spectrum, she informed
me, “Dad, you’re autistic. You’re absolutely autistic!” I was reminded that in my 20s, I struggled emotionally and in everything. I was in therapy from age 23 until adulthood, yet none of those therapists realized that I was autistic.
My first instinct was, “Why didn’t anyone tell me this?” Jamie sent me articles on autism, and I went to a therapist in New York who helped me uncover my autism. It changed my life; I became aware of things I previously was unaware of. The most difficult part of my diagnosis was the therapist interviewing my children and the people in my life and sharing her findings with me. I was shocked that I was so unaware of certain aspects of myself. After I was diagnosed, I began to work on emotional regulation; I think it’s the most overlooked aspect of autism and ADHD.
If you knew as a child you had autism, how would your journey in life be different? What would you have done differently?
I don’t know if I would’ve done anything differently. One of the biggest misconceptions about autism is that we don’t feel cold. What I’ve discovered is that we feel too much, way too much,
and we need to regulate our feelings. As a child, it would’ve helped me to understand emotions, and this knowledge would’ve made business, relationships, friendships, and life a lot easier.
In the documentary, you talk about autism as your superpower. How has autism been a superpower for you?
My superpower of autism was [present] from an early age; I could read fast and retain all the information. I learned to regulate my emotions by reading every book and article on emotions and seeking out experts in the field. I think what has helped me the most with autism is understanding feelings and learning to connect.
What are some superpowers of the autistic people in your film?
The biggest thing I discovered from creating this film is that children who are nonverbal and have difficulty in school are so much more intelligent, loving, and understanding of life than we’ve given them credit. I am in awe of all these amazing people. I hope the film highlights that, even if someone can’t
speak or has difficulty processing information, they still have gifts to contribute to the world.
What are some cool places you traveled to while filming Understanding Autism?
While making the film, I went to 47 cities and traveled to the University of Cambridge, all over the U.K., and Brighton. After traveling around the world, I feel we are only at the beginning of understanding autism. The brain has over 100 billion neurons, and we know so little about it. Dr. Simon BaronCohen taught me that every person is wired differently, and we have diversity in our brains, so we can’t judge a book by its cover.
What impact do you hope Understanding Autism will have on people’s perspective of neurodiversity?
I think neurotypical people will see this documentary and have a firmer grasp of autism. I geared this film for everyone so doctors, therapists, psychologists, and typical people will understand parts of autism, genetics, and the love people with autism and their families have for each other. Some of these families had challenges with a child unable to function independently, yet they still loved the child unconditionally, and I want communities and schools to embrace this same love.
People with autism are said to be at risk for mental health concerns. How did you manage your mental health as a teen?
I discovered all the depression and anxiety I have. I was fortunate to have my ski career at age 16; skiing caused me to meditate, and if I didn’t have the meditation, I would’ve struggled more with anxiety and depression.
What did you learn from filming Understanding Autism?
Since I have siblings on the spectrum, I learned that genetics play a big part in autism. That is why I chose to make this film; this is the most important issue in my family. Many children will get diagnosed with ADHD or autism, and this leads to a parent receiving a diagnosis. I interviewed a family, and the father could not make eye contact and was struggling emotionally. I said, “Have you been diagnosed?” so he went to a counselor and was diagnosed with autism.
How can we celebrate neurodiversity?
My favorite book, which I read 25 times, was Elephant Man. I could relate to the character feeling misunderstood. I want people to understand children with autism and not have critical judgment toward them, which is not justified. I want people to accept autistic people the way they are and teach them in ways they can learn, not trying to make them not autistic but rather the best version of themselves.
What were some challenges you experienced as an autistic dad raising three children?
I love magic, fairs, and parades, and in the movie, my daughter Jamie shares, “As a child, I was embarrassed by dad being more excited than us kids at school events.” Now, my children are accepting of my enthusiasm for those things. I have found ways to fit in with the structure of life, but it was a struggle. It required learning to express myself and my emotions in ways my children and people can understand and relate to.
Only 22 % of people with autism are employed, only 3 % are gainfully employed, and the life expectancy of a person with autism is 54 years old. What are some support systems the U.S. can develop to empower people with autism to thrive?
Two things need to happen right away: first, educate autistic people and employers about the value that autistics provide in the workplace. People with autism can work and contribute when they use their gifts and special interests. Dr. Temple Grandin said, “Find that special interest in children and let them thrive in it, and it will be their career.” My special interests as a child were writing and reading. I began to write at age 10. I am one of the lucky ones; I took my special interests and made it my career by making movies and TV shows. Hollywood was a very difficult business to break into, but I had an interest in books, and I turned them into movies and TV shows. People in Hollywood don’t read a lot of books, but I do, so I found my way. As I said in the movie, all these great inventions are created by autistic people.
Second, big corporations need to realize there is a ton of talent with autistic people, and we see things in unique ways, and this can bring innovation. We have visions of what could be, and we can create new technology and innovation.
In interviewing 200 people with autism while writing my four books, I’ve noticed the key to our success is having someone who believes in us and empowers us to market and refine our gifts. Who were your mentors who helped you market and refine your talents?
I didn’t think I had a mentor who really understood my autism, but I did have many mentors in different areas of my career who helped recognize my talents. I hope my film helps people understand autism so they can mentor people with autism and refine their gifts.
Understanding Autism Documentary
What future projects do you plan to help people with autism?
I am a board member of the National Arc Foundation, the largest intellectual disability foundation in the world. I want to incorporate more programs, funding, and awareness to help people with autism, especially those with higher needs and difficulty functioning in regular life activities.
Scott Steindorff is a prominent Hollywood producer and shares his journey with autism in an hour-long documentary that premiered on April 4th, 2024, on PBS. He created the film to reduce the shame and stigma of being neurodivergent. In capturing personal stories of determination, resilience, and hope, Understanding Autism shines a light on subjects such as identifying autism in women versus men, early signs in children, testimonials from parents, communication barriers, issues in the education system, and more. With one in 36 children diagnosed with autism spectrum disorder, the film delivers a thought-provoking and enlightening narrative that strives to foster greater understanding and acceptance of autism in our society.
Ron Sandison, MDiv., works full-time in the medical field and is a Professor of Theology at Destiny School of Ministry. He is an advisory board member of the Autism Society Faith Initiative of the Autism Society of America, the Art of Autism, and the Els Center of Excellence. Ron holds a Master of Divinity from Oral Roberts University and is the author of A Parent’s Guide to Autism: Practical Advice Biblical Wisdom was published by Siloam, and it is about Thought, Choice, and Action He has memorized over 15,000 Scriptures, including 22 complete books of the New Testament. Ron speaks at over 70 events a year, including 20-plus education conferences. Ron and his wife, Kristen, reside in Rochester Hills, MI, with their daughter, Makayla. �� spectruminclusion.com SQUARE-FACEBOOK facebook.com/SpectrumRonSandison ✉ sandison456@hotmail.com
YOUTUBE Watch the trailer
How Do I Set Up and Best Utilize an ABLE Account?
By Ryan F. Platt, MBA, ChFC, ChSNC, CFBS
Understanding the setup and effective usage of ABLE accounts is crucial for families with individuals with disabilities, particularly those interested in financial planning and government benefits. We have gathered a comprehensive list of frequently asked questions over the years, and we believe the answers will provide valuable insights for many families. But before we delve into these details, let’s revisit the basics of the ABLE Account.
The ABLE account is an account in which a person with a disability can accrue resources over $2,000 and still qualify for financially based governments such as Supplemental Security Income (SSI), which is a monthly income stream, and Medicaid. These benefits can provide services that allow individuals with a diagnosis to live in the community in the most independent situation possible based upon their ability level; however, to access these services, an individual can have no more than
$2,000 in accounts, such as checking, savings, and investment accounts. The only exception to this rule is if money accrues within an ABLE account or a Special Needs Trust.
Here are some facts on ABLE Accounts:
1. Can we transfer stocks into ABLE accounts?
No. ABLE accounts are set up by each individual state, and each ABLE plan will have its own set of investments that must be used.
2. If we set up these accounts, can we max out the amount at setup, or does it have to be deposited in $18,000 increments/year?
Each state ABLE account will have a maximum amount of money that can be contributed over the lifetime of
the account; however, you are limited by the annual contribution limit. The maximum annual contribution limit for 2024 is $18,000 per year, which means you can slowly grow this account and cannot “max out” the contribution at set up. You will likely not want to contribute the maximum allowable amount because one of the rules within an ABLE account is that once the value reaches $100,000, then Supplemental Security Income (SSI) will be suspended.
3. Are these accounts specific to the state of residence? What if our child with Special Needs moves to another state?
The ABLE account is state-specific. However, you do have the flexibility to choose any state’s plan. You or your child do not have to be a resident of the state to use that state’s ABLE account. They can move from state to state and continue to keep the same ABLE account. There is no rule that they must transfer the money from one state to another if they move.
4. Where are these accounts housed?
ABLE accounts are held directly with the state that sponsors the ABLE account you choose to use. For the most part, you must open the ABLE account through the specific website of the state in which you choose. It is not an account housed at your local bank, like a checking or savings account.
Authorized Individual on the account, which would provide you with a level of control over the money.
6. Is there a fee for someone administering these accounts?
The ABLE account, for the most part, is a do-it-yourself type of account. Each state will charge an annual fee on their account. Some states will have different fees for residents and non-residents, so please research the fee before choosing which ABLE you will use.
These are only six of many questions we could discuss, but these seem to be the most repeated questions we hear. Please feel free to visit the resources page of www. ASpecialNeedsPlan.com for more information on ABLE accounts and Special Needs Planning.
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.
5. Who authorizes expenditures from the ABLE Account?
It all depends on the age of your child. If they are a minor, then you will make all decisions regarding the money within the account as the parent. If your child is an adult and is their own Guardian, they control all account decisions. If you, as the parent, are the Guardian of the Person (of your adult child), then you can become an
