Strategies For Life

Exceptional Needs Issue 18

T O D AY

J.D. BARKER'S

UTILIZING MUSIC TO CALM, ENCOURAGE, AND TEACH DIAGNOSED WITH DYSLEXIA, NOW WHAT?

STRATEGIES

FOR LIFE

HELPING CHILDREN CONQUER ANXIETY

UNLOCKING MY CHILD’S VOICE THROUGH AAC

Pr Bul ev lyi en ng tio n

INSIGHT ON WRITING AND AUTISM

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

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

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

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

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

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

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

Contents 14

O c t o b e r 2 0 2 4, I ssue 1 8

OUR COVER STORIES BESTSELLING AUTHOR J.D. BARKER’S INSIGHT ON WRITING AND AUTISM Ron Sandison, M Div This exclusive interview with successful autistic author J.D. Barker highlights how a neurodivergent brain can be a real asset for writing

41

UTILIZING MUSIC TO CALM, ENCOURAGE, AND TEACH CHILDREN WITH SPECIAL NEEDS

Karen Kaplan, MS Tips for using music as a sensory and learning tool to support children with exceptional needs.

44

YOUR CHILD JUST GOT DIAGNOSED WITH DYSLEXIA, NOW WHAT?

Amir Arami, BSc, MEd An education expert shares tips for navigating the path forward after a child receives a dyslexia diagnosis.

54

SHAPING OUR FUTURE

RECITAL READY! HELPING CHILDREN CONQUER ANXIETY BEFORE MUSICAL PERFORMANCES

Rose Adams, OTD, OTR/L For children who choose to take part in musical activities, here are some tips to get them ready for performing.

72

UNLOCKING MY CHILD’S VOICE THROUGH AUGMENTATIVE AND ALTERNATIVE COMMUNICATION Dr. Kimberly Idoko, MD, MBA Esq A look at how AAC can not only facilitate communication but open doors to education, social interaction, and a more independent life.

ARTICLES 8

EMPOWERING NEURODIVERSE YOUTH: STRATEGIES FOR PREVENTING BULLYING

Jan Stewart and Kathleen Hilchey, MEd, OCT, Q.Med A mom to an exceptional child and an anti-bullying expert join forces to share ideas on how to prevent children from being targeted.

12 ALL THINGS OT RECOGNIZING OUR AMAZING STRENGTHS AS A NEURODIVERGENT

Laura A. Ryan, OT, OTR, OTD An occupational therapist highlights The Brain Forest, a book recognizing neurodivergent qualities can be strengths.

20 LIVING WITH AUTISM IN AN INSIDE, OUTSIDE, TOPSY TURVY WORLD AT WAR

25 EMPOWERING STUDENTS WITH AUTISM THROUGH EDUCATIONAL ADVOCACY

22 BOOKS AND PLAY ARE A HUGE INFLUENCE ON LEARNING LANGUAGE

28 EXCEPTIONAL ADVICE FROM MESHELL HELPING THE EXCEPTIONAL PARENT IN DENIAL

Marlene Ringler, PhD An intriguing look at the life of an adult diagnosed with high-functioning autism living in the Middle East as told by his mother.

Lavelle Carlson, MSLP A look beyond the concept of reading to discover how books can help children learn words and language.

Jake Edgar, MS A special education professional shares how involving students in their IEP or education plans can promote their growth, self-awareness, and educational success.

Meshell Baylor, MHS An advocate and mother of four children, two of whom are on the autism spectrum, offers guidance for helping families and caregivers navigate a child’s new diagnosis.

30 AN AUTISM DIAGNOSIS IS NOT A LABEL; IT’S LIFE’S ULTIMATE CHEAT CODE

Jeremy Rochford TI-CLC, C-MHC, C-YMHC Learn from a self-advocate how receiving an autism diagnosis can be the secret code to understanding yourself and living your best life.

34 HOW CAN A SCHOOL COUNSELOR ASSIST MY CHILD WITH A DISABILITY?

Dr. Ronald I. Malcolm, EdD An education professional overviews how a school counselor can assist children with disabilities.

36 SAFETY GOALS WITH NICOLE MAKING OUR SEASON BRIGHT: EASING HOLIDAY STRESSORS FOR CHILDREN WITH EXCEPTIONAL NEEDS

Nicole Moehring This article provides guidance on ensuring that the holidays, which often deviate from routine, are comfortable experiences for children with exceptional needs.

38 THE DATING DUO CONQUERING SOCIAL SHAME TO BUILD YOUR SOCIAL LIFE

Jeremy and Ilana Hamburgh This article examines how to overcome social shame, a familiar feeling among those who fear not experiencing the same relationships as their peers.

48 NATURE NOTES GOING DOWN A SENSORY PATH TO HELP CHILDREN REGULATE Amy Wagenfeld, PhD, OTR/L, SCEM, EDAC, FAOTA Ideas for creating interactive walks, paths, and stations to support a child’s sensory needs.

52 HOW TO DEVELOP SHARING WHEN THERE ARE LEARNING DIFFERENCES

Karen Kaplan, MS A special educator offers ideas for building the concept of sharing in children with exceptional needs.

54 WE LEARNED ALL THE WRONG LESSONS FROM THE PANDEMIC Madeline Richer Following the pandemic, in-person learning and penalizing absence have become commonplace, and a teacher questions why we haven’t learned from the past.

56 EXCEPTIONAL SPOTLIGHT MEET DR. MORÉNIKE: ADVOCATING FOR THE NEXT GENERATION

Haiku Haughton An interview with educator, author, autism and HIV advocate Dr. Morénike Giwa Onaiwu.

60 AUTISM-FRIENDLY FAMILY TRAVEL: TIPS FOR A STRESSFREE JOURNEY Brianna Hillison, BCBA How to ensure family trips are fun and exciting when disrupting your child’s routine.

EXCEPTIONAL NEEDS TODAY

Exceptional Needs T O D AY

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

68 SUPPORTING A HARD-OFHEARING CHILD AT SCHOOL

Dr. Ronald I. Malcolm, EdD An educator shares guidance for helping hard-of-children to thrive in the classroom.

77 REFLECTIONS COME TOUCH HIS CHEEK©

Gary Shulman, MS, Ed A retired special needs consultant shares a moving poem offering insight into those with exceptional needs.

78 VISTA DEL MAR HELPS PEOPLE ON THE SPECTRUM NAVIGATE THROUGH SELF-ACCEPTANCE Kate Foley Dr. Joshua Durban talks to Kate Foley about Vista Del Mar’s new autism clinic, which is at the forefront of its latest venture.

82 A MOTHER AND DAUGHTER’S FIGHT AGAINST DISABILITY DISCRIMINATION

Susan Russell A young woman’s challenging journey to receiving the degree diploma she earned is shared by her biggest cheerleader: her mother.

Founder/Publisher Amy KD Tobik, BA Lone Heron Publishing, LLC Magazine Staff Editor-in-Chief: Amy KD Tobik, BA Editorial Assistant: Margo Marie McManus, BS Editorial Intern: Haiku Haughton Copy Editor: Emily Ansell Elfer, BA Digital Marketing Coordinator & Social Media: Dione Sabella, MS Graphic Designer: Annie Rutherford, BA Professional Consultants Chris Abildgaard, LPC, NCC, NCSP Debra Moore, PhD Brett J. Novick, MS, LMFT, CSSW Annette Nuñez, PhD, LMFT Amy Wagenfeld, PhD, OTRL, SCEM, EDAC, FAOTA Contact editor@exceptionalneedstoday.com advertising@exceptionalneedstoday.com submissions@exceptionalneedstoday.com editorial@exceptionalneedstoday.com

86 FINANCIAL FOCUS THE VALUE OF AN EXPERT GUIDE FOR EXCEPTIONAL NEEDS FAMILY PLANNING

Ryan F. Platt, MBA, ChFC, ChSNC, CFBS Discover the value of working with an expert guide who understands government benefits, taxation, legal structure, and financial strategies.

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.

EDITOR’S LETTER

From the Editor’s Desk STRATEGIES FOR LIFE

Life is beautiful, but it can be hard; there is no other way to put it. Perhaps my advocacy role in the disability community magnifies my perception. Or maybe it’s my disability diagnosis that affects my view. But even on the most challenging days, when we listen to one another, share our experiences, and provide grace, I see a world of possibilities.

Revealing our lives can be challenging, especially when we are knee-deep in handling a child’s diagnosis or our own. Or perhaps we feel consumed by the idea of providing a lifetime of support when there are significant disabilities. According to the World Health Organization, millions of people act as unpaid caregivers to an estimated 1.3 billion people with disabilities worldwide.

Issue 18 is a unique edition offering a rare glimpse into the challenges within the exceptional needs community. It provides valuable strategies and support, acknowledging that everyone's situation differs, so approaches and solutions will always vary.

It’s an honor to feature J.D. Barker on our cover—a New York Times and international best-selling author whose books have sold in over 150 countries, to include a collaboration between ubiquitous thriller writer James Patterson. In an exclusive interview, autism advocate and author Ron Sandison, M Div, highlights J.D.'s fascinating college and corporate employment journey, which ultimately led him to his late autism diagnosis. Today, J.D. believes his neurodivergent mind is an asset to his writing career and key to developing his books. Read Bestselling Author J.D. Barker’s Insight on Writing and Autism to learn more about what has inspired his work and what he wishes everybody knew about autism.

Did you know an estimated 1 out of 10 people have dyslexia?

Early diagnosis and intervention are crucial in learning the skills to improve reading and develop life strategies. If you or someone you know has difficulty decoding words, which can impact reading fluency and comprehension, read Your Child Just Got Diagnosed with Dyslexia, Now What? by education expert Amir Arami, BSc, Med. Amir, who, following a traumatic brain injury, dedicated himself to creating solutions to empower people with communicative difficulties through assistive technology, shares tips for navigating the path forward after a child receives a dyslexia diagnosis. He says 6 | Exceptional Needs Today | Issue 18

recognizing that dyslexia is a specific learning disability, not a reflection of a child's capabilities, is crucial in shaping an approach to support.

Sticking to a routine can be critical when someone is diagnosed with autism. Brianna Hillison, BCBA, says a long trip and a new environment can be overwhelming sometimes.

Be sure to read her piece, Autism-Friendly Family Travel: Tips for a Stress-Free Journey, where she provides strategies for managing sensory overload, communication difficulties, and unexpected plan changes.

We hope you find the reassurance and support you need as you read Issue 18. Our articles contain excellent strategies for conquering relevant issues, such as managing holiday stressors, overcoming social shame to build a social life, finding ways to prevent bullying, and unlocking a child’s voice through Augmentative and Alternative Communication. Be sure to read guidance for helping families and caregivers navigate a child’s new diagnosis and ideas for creating interactive walks to support a child’s sensory needs.

Be sure to also look for our newest column, Exceptional Spotlight, which highlights the extraordinary stories, achievements, and perspectives of those who have made significant contributions to the special needs community. Don’t miss Haiku Haughton’s fascinating interview with educator, author, autism, and HIV advocate Dr. Morénike Giwa Onaiwu.

As always, we thank our contributors, advertisers, and subscribers who continue to support and play an integral part in our award-winning magazine. Let's continue to work together to bring awareness, acceptance, and inclusion.

Best,

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

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ANTI-BULLYING STRATEGIES

Empowering Neurodiverse Youth: Strategies for Preventing Bullying

Handling Special Education IEP Disagreements Like a Pro

By Jan Stewart and Kathleen Hilchey, MEd, OCT, Q.Med

By Devon Rios

8 | Exceptional Needs Today | Issue 18

M

y daughter Ainsley is my hero. She faces significant challenges with attention-deficit/hyperactivity disorder (ADHD), Tourette’s syndrome, learning disabilities, and mood and anxiety disorders. She cannot read social cues, leading her to misinterpret what others say or do and to blurt out inappropriate comments.

When she was in middle school, her behavioral challenges led to teasing, bullying, and exclusion. She yelled out of turn, jumped on desks, and took other students’ lunches if she felt they weren’t friendly to her and could be rude.

Those middle school years were tough enough for every adolescent, but for Ainsley, they became unbearable. At first, some students made fun of her and imitated her. The teasing escalated to bullying, to the point that one day, three girls cruelly locked her in a locker. Fortunately, the principal was nearby and heard Ainsley’s calls for help. And while the school intervened on her behalf, Ainsley often cried at night and had trouble believing in herself. My heart broke when I came home one afternoon and found her curled up in a ball, sobbing, “Why don’t I have any friends? Why is everyone so mean to me?”

The good news is that we can help our children learn to prevent bullying!

Meet Kathleen Hilchey Kathleen Hilchey is a highly regarded anti-bullying and conflict specialist. She is also a teacher and the mom of two neurodivergent children who were targets of bullying. She has seen first-hand the pain that bullying creates and the lasting impact of these traumatic school or work experiences, and she knows the need for our kids to find a voice in friend-tofriend conflicts.

These experiences have led her to two foundational beliefs:

•

Bullying is a global issue with impacts that extend far beyond the moment of aggression.

•

If we can teach people the skills to handle conflict better, bullying ends.​

Based on the work of Adele Faber and Elaine Mazlish in the classic book Siblings Without Rivalry, Kathleen has devised a simple problem-solving method to help our children find their voices in friend-to-friend conflicts. This proactive process bully-proofs our kids by teaching them effective conflict management strategies.

Please read Kathleen’s own words below: We know that neurodiverse kids get more easily tangled in the web of toxic relationships. My goal is to help them find a voice to stand up for themselves in a way that drastically decreases their chance of being bullied.

ANTI-BULLYING STRATEGIES

Helping neurodiverse youth find their voices A significant part of this process relies on adults guiding while allowing the child to explore and select the best solution.

This might mean they will identify a solution that seems odd, wacky, and ineffective to you. If your child seems confident in their solution, it is the right one for them: confidence is the key ingredient for success!

This is because we have the bullying theory wrong. Humans who bully aren’t looking for the weakest, smallest, or nerdiest kids; they are simply looking for someone they can scare.

Once they sense fear from another person, they attach themselves to them and repeat whatever action or words make them afraid.

Yet, suppose our neurodiverse kids are given easy tools to extricate themselves from these tricky social situations with grace. In that case, they empower themselves not to give the bully the fear response they crave. The aggressor will simply look for another target.

It’s okay if you disagree with your child’s chosen strategy. The key is that it must feel authentic to them.

The Problem-Solving Method This method is most effective as a prevention strategy before your child is bullied. It is best used in general peer-to-peer conflict: unkind words, jostling, play-fighting gone sideways, or unkind choices. Once bullying has developed, it’s less effective because it doesn’t address the power dynamics and trauma that develop in these toxic relationships.

Let me share a situation in which it DID work. A few years ago, schoolmate Charlotte shoved eight-year-old Eve in the schoolyard a few times. Eve had ADHD and autism, and her parents were concerned that she was being picked on because of her diagnoses. This situation hadn’t quite hit the threshold of bullying, but left unchecked, it could easily have gotten there.

I taught Eve and her parents The Problem-Solving Method:

Step 1: Write a one-sentence statement about what you’ve noticed “I noticed Charlotte has shoved you a couple of times. What’s up?”

Listen carefully and ensure you truly understand the situation.

Take notes so you can refer to this statement as needed.

Step 2: From the information in Step 1, create two sentences “I want you to be able to feel safe in the schoolyard. AND I want Charlotte to be stood up to in a way that is respectful.”

Exceptional Needs Today | Issue 18 | 9

ANTI-BULLYING STRATEGIES Ask: “What else?” in a neutral tone every time you have written a solution.

Suggest no more than 50% of the solutions.

This is not the time to eliminate ideas or lecture your child on good or bad strategies. The quieter you are, the more your child will learn what your voice sounds like.

Step 4: Eliminate ideas Eliminate every answer that doesn’t accomplish BOTH goals: feeling safe in the schoolyard AND respecting Charlotte. (This is where you get to eliminate all the solutions that don’t sit well with you!)

Step 5: Let your child choose This is the most crucial step. You are entrusting them with problem-solving. Remember that they are the experts in their lives.

When Eve saw Charlotte coming towards her, she decided she would giggle and then make the motion of swimming away.

Swimming was her favorite activity, and it made her feel strong.

When she chose this plan, she lit up like the sun! I asked her, “Do you think you can do this?” She said, “Yes! I’m actually excited, too!”

Eve’s parents were extremely nervous. They worried that her response would lead to more teasing. I told them to trust her (and me!). I noticed the utter happiness on her face as she practiced her swimming plan, and I reminded her parents that Charlotte’s goal was to instill fear. Eve couldn’t be scared while swimming; this is where she felt the most confident. This gave them the resolve they needed to let her go through with it.

The next day, Charlotte approached Eve in the yard with a mean look on her face. Eve giggled and “swam” away from her with all the joy in the world. Charlotte tried several more times, leaving Eve to splash and swim around the schoolyard. And soon, Charlotte left her alone!

Consider Eve’s underlying message to Charlotte as she was swimming away from her: “You don’t scare me!” This led Charlotte to shift her gaze away from Eve since she wasn’t getting the desired fear response.

Step 3: Brainstorm ideas “What are some ways to help you feel safe AND stand up to Charlotte respectfully?”

Work with your child to come up with as many solutions as possible.

Write down every solution (even the terrible ones!).

10 | Exceptional Needs Today | Issue 18

I am astounded by the solutions my clients and students devise and often surprised that they work. The “swimming away” strategy seemed so wacky that even I couldn’t believe it would succeed…but it did!

Step 6: Keep the brainstorming paper Touch base in a day to see how the chosen solution is going. If it hasn’t worked, go back to the brainstorming sheet, add some new options, and choose the next best one to try.

ANTI-BULLYING STRATEGIES Like Eve’s parents, I was skeptical when Kathleen told me about the swimming strategy. I believed Charlotte would simply make more fun of Eve and escalate the situation. But, as Kathleen found, it worked!

Now, let’s think about Kathleen’s process. She taught us to:

• •

Empower our child to take stock of a problem Together with our child, narrow it down to two main points

•

Think of potential solutions together, and let our child select the one to try

As parents and caregivers, we can empower our neurodiverse youth not to fall victim to bullies. In doing so, we help them build confidence and believe in themselves. And doesn’t this sound just like an adult solving a problem? What could be better?

References Faber, A., & Mazlish, E. (1987). Siblings without rivalry: how to help your children live together so you can live too. New York, Norton.

Jan Stewart is a highly regarded mental health and neurodiversity advocate, author, and parent. Her award-winning memoir Hold on Tight: A Parent’s Journey Raising Children with Mental Illness is brutally honest and describes her emotional roller coaster story raising two children with multiple mental health and neurodevelopmental disorders. Her mission is to inspire and empower caregivers to have hope and persevere, as well as to better educate their families, friends, healthcare professionals, educators, and employers. Jan chairs the Board of Directors at Kerry’s Place Autism Services, Canada’s largest autism services provider, is a Today’s Parent columnist, and was previously Vice Chair at Canada’s Centre for Addiction and Mental Health.

She spent most of her career as a senior Partner with the global executive search firm Egon Zehnder. Jan is a Diamond Life Master in bridge and enjoys fitness, genealogy, and dance. 🌐 janstewartauthor.com AMAZON Hold on Tight: A Parent’s Journey Raising Children with Mental Illness Kathleen Hilchey, MEd, OCT, Q. Med is a conflict specialist in Ontario, Canada. She works from a trauma-informed lens with families, camps, schools, and workplaces to stop cycles of bullying and infuse conflict management skills into our systems.

She spent 10 years teaching in the secondary public system but started her career in Outdoor and Experiential Education.

She has an MEd in Peacebuilding Techniques from Brock University and is a Qualified Mediator. 🌐 strongandkind.org SQUARE-FACEBOOK kathleen.strongandkind

INSTAGRAM @kathleen.hilchey.antibullying LINKEDIN kathleen.strongandkind

Exceptional Needs Today | Issue 18 | 11

ALL THINGS OT Recognizing Our Amazing Strengths as a Neurodivergent

By Laura A. Ryan, OT, OTR, OTD

N

euroaffirming culture not only recognizes one’s differences as strengths but also how those strengths can be assets. This article highlights a wonderful book called The Brain Forest, written by Sandhya Menon, a neurodivergent pediatric psychologist. This picture book illustrates how different neurodivergent brains function and the advantages each neurodivergent profile brings to the table. So, let’s take a walk through The Brain Forest!

The Brain Forest is written in rhyme, which makes it fun to read and listen to. Each tree in the “forest” has a different leaf pattern, illustrating how each brain is wired or physically created. For example, the tree that depicts a dyslexic brain is drawn with patterns because that is how someone with dyslexia may best learn. Since we are often made up of combinations of different profiles, the brain of someone with more than one diagnosis is patterned after the trees drawn with those particular patterns. This is important because we rarely have just one patterned profile; we are often a kaleidoscope of many patterns. Each page is dedicated to a neurodivergent profile, including autism, attention-deficit/ hyperactivity disorder (ADHD), and dyslexia.

Other neurodivergent profiles, including intellectual disability, Tourette’s syndrome, situational mutism, giftedness, pathological demand avoidance, and OCD, are referenced.

Each illustration and rhyming description indicates how that brain works.

Throughout The Brain Forest is a thread of affirmation for the value of each brain style and the importance of inclusion and universal design so ALL brains can sing. As an occupational therapist, I particularly like the pages at the end of the book that relate characteristics to occupations that one could find meaningful or succeed in. For example, one picture

12 | Exceptional Needs Today | Issue 18

depicts a young person describing themselves as good at “understanding animals” and suggesting they may be a future veterinarian. This opens an opportunity to discuss the wants, hopes, and needs that lead to a meaningful and fulfilling life.

Recognizing one’s strengths and the functional application of those strengths is the focus of Autism Level UP’s tool

OCCUPATIONAL THERAPY titled Person Specific Sensory Factors: Generic Challenges and Strengths. While not exhaustive, this document nicely separates the different senses; auditory, visual, tactile, olfactory, proprioception, and vestibular into two categories: hypersensitive (more sensitive) and hyposensitive (less sensitive) if it is applicable to that particular sensory system.

The document then lists the potential strengths and challenges of each sensory profile and what activities and environments can be supportive or disadvantageous for that sensory profile.

For example, for an individual with heightened hearing, a strength may be the ability to discern the nuances of a particular sound, such as pitch, and a challenge may be the large amount of auditory processing that needs to be filtered and the potential to become overwhelmed.

Vocational areas where this individual may be successful could include tuning musical instruments, and leisure/social areas supporting this strength could include relaxing with friends while listening to music. Environments that could be less supportive for an individual with this profile could be noisy settings, such as a mall that could echo sounds, or a spot with many people, such as an airport. Looking at this chart from a strength perspective, one can build their talent in an area that is supportive of their profile, thereby leading to a greater percentage of success and happiness.

Looking at this from an affirming perspective, one can predict what they may need for self-support and proactively support that need. There are some important caveats to this chart, however. The authors of Autism Level UP! clearly state that every person is different, and this chart is not “one size fits all.” Every person is unique and may have a mix and match of each descriptor. Lastly, one should consider the context that the strengths and challenges may present and that certain vulnerabilities may occur only in a certain setting.

I particularly like the pages at the end of the book that relate characteristics to occupations that one could find meaningful or succeed in.

Understanding how our brains work and how to use our strengths authentically, meaningfully, and productively is a building block to a healthy and happy future. Take a meander through The Brain Forest and see how you can use your talents!

Resourcess The Brain Forest https://www.onwardsandupwardspsychology.com.au/product-page/ book-the-brain-forest Autism Level UP! Sensory Factors Strengths/Challenges https://www.autismlevelup.com/#tools

Laura A. Ryan, OT, OTR, OTD, is an occupational therapist who grew up on a large horse farm in Massachusetts. She has been practicing for over 30 years and has been using hippotherapy as a treatment tool since 2001. She enjoys seeing the happiness and progress each person has achieved through the therapeutic impact of the horse. Laura has also developed a program for breast cancer rehabilitation using therapeutic input from the horse. ✉ hooves4healingot@gmail.com

Exceptional Needs Today | Issue 18 | 13

EXCEPTIONAL ADVOCATE

Bestselling Author

J.D. BARKER’S Insight on Writing and Autism

By Ron Sandison, M Div

Exceptional Needs Today meets J.D Barker, an author who believes his neurodivergent mind is an asset to his writing career and key to developing his books.

How did your childhood experiences prepare you to be an author?

I grew up without a television, so I read from a very early age.

My mom would take us to the library all the time, and I began to read by age three. By kindergarten, I had read every Hardy Boys and Nancy Drew mystery. I moved on to the classics like Charles Dickens and Mark Twain, and I read my first adult book, Dracula, by age eight. I really feed my imagination by getting lost in books and stories.

Our house was in the middle of a forest, which was a scary, creepy location to begin with so that fueled the horror side of it. I had a sister who was 15 months younger than me, so we 14 | Exceptional Needs Today | Issue 18

would write stories to each other. We created a little library in our house. She would check out my stories; she returned them; if she didn’t, I charged her a late fee. I think my sister still owes me money. My writing began basically by reading and creating stories of my own.

Before writing, what jobs did you have, and how did you get your first agent? Also, what was your college major?

I have loved to write my entire life, but my parents said you cannot make a living from it. [I was told] it’s a fun hobby and something you can do on the side. My parents wanted me to focus on a desk job, so I went to college for finance. I got degrees in business and information technology and finished halfway through a psychology degree. I focused mainly on finance. At night, I would write to keep my sanity because that’s what I enjoyed doing. I ended up in the corporate world.

In college, I worked for RCA Records in Fort Lauderdale and the Miami, [Florida] area. I was a glorified babysitter; when a

EXCEPTIONAL ADVOCATE recording artist came to town, I would pick them up from the airport and drive them to their interviews, the radio stations, or concerts. Artists like Tiffany, Debbie Gibson, and bands like New Kids on the Block, Poison, and Guns and Roses. I realized that I had these very famous people “captive” in a car for four to five days, so I started to interview them and sell those interviews to magazines like Seventeen and TeenBeat.

I learned that people who work in newspapers and magazines have a novel in their desk drawer, which they have been working on forever and is 500,000 words, and after a decade of writing, they are almost finished. They would hand their novel over to me because I am very good at grammar and punctuation, and I would get to the meat of the story, finetune it, and help them publish it. This turned into a side gig.

During the day, I worked in finance and by night as an editor. As word spread, I received calls from agents to help their authors fine-tune their manuscripts. I did this for 20-plus years, and I ended up with six different books that hit the New York Times Bestsellers list, all of which had other people’s names on the cover—this gets old after a while.

In today’s world, I write the background blurb in 200 words, describing what the story will be. I come up with the title, and I create my characters. And once I have that I create a detailed outline and write as much down on paper. By doing this, I can write the book much faster, and if I don’t know where the story is going, I go for a five-mile run, and while running, I think about what comes next. With the outline, I know what comes next, so I can use my running time to think about how I can make what comes next even better. I end up with a tighter, faster, and stronger story.

At one point, my wife took me aside and said, “I know you want to be a writer; let’s find a way to make this happen.” We were kind of stuck; we had a big house in Florida, a boat, and all the expenses. Our monthly bills were around $12,000, so I could not just walk away from the corporate job without making drastic changes. We sold everything and bought a tiny duplex in Pittsburgh; we rented out one side and lived on the other.

This helped us get our expenses down to almost nothing and live off the savings until I finished my first book.

What are two qualities that make a great thriller or horror book?

In a great thriller, the readers need to want to keep turning the page. With a horror novel, they have to be scared to turn the next page. My stories, I like to think, are primarily suspense novels, and I may include science fiction, horror, or some other element in them.

What format do you follow when writing a book?

My format has changed over the years; when I first started, I would write up the scenario and run with it, and I did not know exactly where the story was headed. This is how Stephen King writes. King famously says, “If you don’t know how the story will end, your reader will never figure it out.” It’s a fun way to write a book, but you have a lot of wasted words at the end of the process. I write a lot with James Patterson, the first book we co-wrote, we made it up as we went. At the end of the writing, James showed me all the extra work we had done to reach the finish line. To contrast that method, he sent me an outline for The Noise, and we wrote that book together with the outline. I saw how quickly the process went and how much easier it was.

What challenges did you experience when publishing your first novel?

My first book was Forsaken, and when I wrote this book, I knew how to write a story because I had been doing it for a very long time. In the book, I had to explain where the wife bought a journal, so I had her walk into Needful Things and buy it there, which is from Stephen King’s novel, and I got King’s permission to use it in the book. When I was seeking a literary agent, I thought I had a slam dunk, I had a strong story, and Stephen King’s blessings to use characters from his writing. I made a big mistake when I used a form letter for querying agents. I did not check the agent’s format for submitting a manuscript. I sent Exceptional Needs Today | Issue 18 | 15

EXCEPTIONAL ADVOCATE out 200 queries and did not get much of a response; I learned you need to follow the agent’s format. I decided to self-publish and sold 250,000 copies. With my second book, I sent out 53 queries and received 14 offers. This time, I followed the agent’s instructions for a query.

How has autism helped you write your books? At what age were you diagnosed, and what led to your diagnosis?

Having autism has helped me write books; they are very detailed, they have crazy plotlines, and I am able to keep it all straight in my head, and I know it’s because I am autistic.

I was born in 1971, so they did not really diagnose autism much back then. I was the quiet little “problem kid” in the corner. I went my entire young adult life with autism, not knowing that I had it, but I knew that I was different and did not understand why. When I was in the corporate world, I had a lot of trouble getting along with the people I worked with. I was extremely good at my job, which is why they kept me. So, the company sent me to anger management classes. I was in one of those classes with a therapist, and 30 minutes in, she asked me, “Have you been assessed for autism?” She gave me a couple

of tests and explained to me what autism was, and everything began to click. Once I had the diagnosis and worked with people who specialized in autism, that’s when things really began to change for me. I was able to get a handle on my life and my career and move forward with focus.

Having autism has helped me write books; they are very detailed, they have crazy plotlines, and I am able to keep it all straight in my head, and I know it’s because I am autistic.

Do you have any writing rituals or favorite places to write your books? My ritual is having my cat Frishma or dog Rudy next to me on the floor as I write my manuscript on my laptop.

For me, I started to write while in the corporate world, and I worked 60-80 hours a week, and I tried to write in between.

I would listen to a thunderstorm soundtrack, and this would prepare my mind for writing. The soundtrack would kick my brain into the writer’s mold. When I was working corporate, I would put on the headphones, play the thunderstorm, and quickly pound out 200 to 300 words in a few minutes.

Now that I write full-time, after I get my coffee early in the morning and turn off the internet, I write at the same time and place each day. I write about 2,000 to 3,000 words a day. Once I hit that number, I turn the internet back on and do the business side of being an author. My books are in 150+ countries, so I have emails coming from everywhere and a lot of interviews.

What tips would you give to a young adult with autism who desires to write a thriller or horror novel?

Definitely read a lot. I had no formal training in writing, but I learned how to tell a good story because I read a lot of good stories. There’s a structure in the story, and as a person with autism, you will pick up on that structure, you will see the pacing elements, a twist happens here, and this is where we go into the climax of the story. My mind grabbed all that. If you read a lot, that structure will get stuck in your head.

You have to practice writing and do it every day. It’s no different than exercising at the gym. I feel that there’s a writer’s muscle, and if you work it every single day, you get better and better; if you tackle it once or twice a week, you won’t get the results you’re looking for.

16 | Exceptional Needs Today | Issue 18

EXCEPTIONAL ADVOCATE What are some unique methods you use to market your books?

Wow, that is tricky. It changes all the time. That’s one of the reasons I love working with James Patterson. He comes from a marketing background. He was in advertising before writing books. One of his early marketing strategies for a book was using a Toys R Us theme song. He comes up with crazy ideas, and that’s what I also do.

I interviewed Madonna and asked her what she does to market her products, and she said, “I make a list of what everyone else is doing, and once I’ve composed that list, I create a list of what no one else is doing, and that’s what I do to promote my albums and books.” I look at what everyone is doing and come up with something no one else is doing. I find in today’s world one of the best ways to promote your book is through social influencers with blogs and videos on TikTok or Facebook. You give them a copy of your book; they will write a review and share it on their platform in videos and it generates clicks. I’ve seen a blogger sell more books with a review than The New York Times.

What did you enjoy most about writing The Noise with James Patterson? And how did you build that connection and make your different writing styles synchronize?

It was fun for me and was the first book I wrote off an outline he gave me. The Noise is such a fast-paced, crazy story. Patterson told me, “I’ve come up with an idea for a horror novel that no one has done yet.” I didn’t believe him until I saw the outline.

We wrote six different endings and voted to decide the ending.

What advice would you share with a writer struggling with finding an agent or publisher?

You gotta keep at it. Definitely listen to literary agents or publishers’ advice. If somebody tells you no, see if you can get the reason, they said no. This can be tricky because a lot of agents will just ghost you and not respond. I read every one of my reviews, especially the bad ones, because they point out what’s wrong with the story. If something is worthwhile, I want to make the corrections and work it into my next book.

How does your wife encourage your writing?

If my wife had not pushed me to make the financial changes, I would probably still be working the corporate job I hated because that was safe. Autistic people love patterns, so changing my pattern was very scary to me because I was making decent money. So, having someone in my corner pushing was huge. She has a real estate business, and we work together to bounce ideas off each other. Sometimes, I have an idea for a book and write a few chapters; she is the first person to read it. If she likes it, I keep going; if not, it goes in the trash, and I try something else.

Your latest thriller is Behind a Closed Door; what are some twists in this book and why did your publisher use puzzle pieces for the cover?

It was originally sold as 50 Shades meets David Fincher's The Game and both of those have puzzle pieces. This story has a lot of different elements coming together that most people would not expect. It’s about a husband and wife who are having marital problems and they see a therapist. During the therapy session the therapist recommends they download an app.

It’s essentially Truth or Dare for adults, so they download this app, and the app gives tasks; the first few are pretty tame, but the tasks keep getting more taboo as things go on. Ultimately, the wife gets one that says, “Would you kill a stranger to save someone you love?”. Her friend clicks yes because he thinks it’s a joke, and a map comes up with a pen and a timer. From there, things really escalate and get out of control.

What was the inspiration for Behind a Closed Door? How did you develop the characters in the book?

What actually spawned the story? I had the characters in mind, Abby and Brandon, for a really long time, but one night, as my wife and I were talking over dinner about a house she had just bought in Georgia with seven bathrooms, I remarked, “You Exceptional Needs Today | Issue 18 | 17

EXCEPTIONAL ADVOCATE should use the company Bath Fitter. They come in and give a facelift to a bathroom.” I just mentioned it casually at dinner that night, and later, my wife and I both noticed advertisements for Bath Fitter on our phones and social media feeds. We did not type it into anything; we only spoke it out loud.

followed by another serial killer, and he kept following that formula because that’s what everybody wanted but he got burnt out and decided to write the book When the Wind Blows about a girl with wings, and his fans completely turned on him because it was so different and they didn’t expect it.

I researched and discovered that in our phone contracts, we give providers permission to listen and use the information they gleam for advertising. That’s creepy as hell! Your entire life is on your phone. Where you go, where you’ve been, what you’ve viewed, every conversation, your phone knows more information about you than you know. The idea of the book is what happens if that information falls into the wrong hands.

Who are some authors you have had on your podcast, Writers Ink? What have you learned from those authors that enhanced your writing?

What are some characteristics that make an amazing author?

In the thriller world, you have to keep the reader turning the pages. I have a cliffhanger in every chapter, and if it does not have one, I turn it around and make sure it does. You have to be a prolific writer and put out a lot of books. You cannot write one book every five or six years. You need to be in front of people on a regular basis. In addition to being a good writer, you need to get your name out there.

How have you been able to avoid settling into one genre but bounce between thriller, suspense, and horror?

I knew I wanted to do that from the beginning. I know quite a few well-known writers, and I asked them about this.

Dean Koontz gave me spectacular advice, “If you want to use multiple genres as a writer, you’ve got to do it from the beginning and find a common thread.” My first book was a horror, my second was a thriller, my third one was a horror, and then I went back to thriller; by bouncing back and forth, my audience came with me, so Dean was right. Patterson gave me the same advice; his first book was The Thomas Berryman Number which nobody has a copy of, but his second book was Along Came a Spider, which was one of the top-selling books ever. He followed that with a book about a serial killer,

I picked everybody’s brain. We had Dean Koontz, James Patterson, Karin Slaughter, Lisa Gardner, and just about everyone you could possibly think of on Writers Ink. One of my books, A Caller’s Game, was picked up for a movie, and I was asked if I could write a screenplay, so I booked Gillian Flynn to learn how she wrote the screenplay for Gone Girl. I wanted to hear Gillian’s entire experience with writing a screenplay to understand the process.

What is something you wish everybody knew about autism?

For me, eye contact has been a big thing; for me to follow a conversation, I cannot look a person in the eyes. I have to look off to the side and focus on something else. If I do look someone in the eyes, I have to say to myself repeatedly, “Keep eye contact. Keep eye contact.” And because of this, I am not paying attention to the actual conversation, which is the opposite of what neurotypical people do. People think because I am not looking at them or my eyes are jumping around, I am not paying attention to them; I wish people would realize that is not the case. If I am not looking at you in a conversation, I am paying attention.

Video interview lightly edited for publication.

Video interview with J.D. Barker YOUTUBE Watch the interview

J.D. Barker is a New York Times and international best-selling author of numerous novels, including Dracula, The Fourth Monkey, and his latest, Behind a Closed Door. He is currently collaborating with James Patterson. His books have been translated into two dozen languages, sold in more than 150 countries, and optioned for both film and television. Barker resides in coastal New Hampshire with his wife, Dayna, and their daughter, Ember. 🌐 jdbarker.com SQUARE-FACEBOOK facebook.com/TheRealJDBarker 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

18 | Exceptional Needs Today | Issue 18

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Living with Autism In An Inside, Outside, Topsy-Turvy World At War

By Marlene Ringler, PhD

20 | Exceptional Needs Today | Issue 18

MY WORD

M

y son recently celebrated his 50th birthday—a time to celebrate his achievements, to help him continue to deal with his sense of who he is in today’s troubled world, and to honor his wonderful collection of family members, work colleagues, and friends. He embraced the moment with an elevated sense of joy and happiness. Given that my son lives in the Middle East, his ability to express such immense happiness and pride was moving in a way that deeply affected me as he was diagnosed nearly 30 years ago with high-functioning autism (HFA).

We know that HFA is a subcategory of autism. A person with HFA usually displays high levels of cognitive functioning but is stymied when trying to understand what we would describe as typical social encounters, often struggling to make sense of social interactions and behaviors. Social communication skills, including deciphering nuances, often frustrate those on this end of the autism spectrum, and my son expresses his frustration so often, especially when he is with his family. Messages, cues, and subtleties often confound and frustrate my son, who is an excellent problem solver, capable of intellectualizing and explaining even the most complicated issues, such as political positions and the behavior of world leaders.

So, imagine what it must feel like to a 50-year-old autistic adult when sirens blast, warning of incoming missiles, when going to the grocery store only to find the usual supply of basic goods suddenly disappearing from the shelves, when public transportation is ground to a halt, or schedules change abruptly due to concerns of terror attacks. Imagine what it feels like when order, predictability, and rules are abstract concepts that guide and influence our behaviors during times of peace but are certainly not reliable markers during war times. What we depend on to give our lives a sense of purpose and stability has disappeared, and our daily routines need to be revamped and changed almost daily.

Disruptions in work schedules, medical services, and the availability of goods and services have become the norm for my son, who often shares with his family his utter frustration at not being able just to do what he does on any ordinary day.

Living in a war zone, there are no such things as ordinary, routine, or typical, and the threat of harm and the existential threat to living haunt him each day.

My son struggles to make sense of it all, to try to function in a topsy-turvy world that has become upside down. And yet, ironically, as an autistic child, adolescent, and young man, this pretty much has defined his world, at least as he has described it to his family, therapists, and social workers over the years.

His perception of the world, as much today as it has been as he was growing up as an autistic, is different but not damaged or wrong or sick, as it is his world. We, the neurotypicals, must and should learn to understand, respect, and accept that autistics, like my son, are not mentally incapacitated but are widely neurodivergent in their understanding of life and their world.

Living in a country at war changes us in ways we never thought possible. Trust, confidence, and a sense of well-being seem to be elusive as we, the neurotypicals among us, make a supreme effort to come to terms with the reality that our world and its citizens are sadly flawed and that what we had always assumed to be true is now questionable.

And so, for my HFA 50-year-old son, his world, living in a country at war, is even more precarious, fragile, and threatening.

And yet, despite it all, my son remains an optimist. He truly believes that people are good and do not mean to cause harm to him or anyone else. My son believes that at the end of this conflict, his homeland will be a safer, happier, and more secure place to live. He believes that the people who are confrontational and aggressive today are reacting to the dreadful daily pressures and that when this war ends, these same people will be kinder and gentler. This is his world perception, naïve, perhaps, but touching nonetheless because of and perhaps despite this naivety, so typical of persons on the spectrum, his country can become, once again, a happier, more comfortable place to be.

So happy birthday, dear son, and may your dreams of a world at peace come to be.

Marlene Ringler, PhD worked as a professional in Maryland before moving to Israel in 1986. While living in the United States as the mother of a child on the autism spectrum, she devoted much of her personal and professional time to learning about the special needs and challenges of children on the spectrum. Her book, I AM ME, My Personal Journey with my Forty Plus Autistic Son, published by Morgan James and available on Amazon, addresses the issues involved in raising an autistic child into adulthood. As her child aged, Dr. Ringler learned to identify and take advantage of both public and private services available to support people with exceptional needs. In the process she became aware of the critical absence of support systems and services for adults on the spectrum. These and other related matters have become the focus of her research and writing over a period of several decades. Her articles addressing a variety of vital issues have appeared in professional and national publications in the United States and elsewhere. She is a public speaker who speaks passionately about persons on the autism spectrum. Dr. Ringler is recognized as an advocate for persons with disabilities..

SQUARE-FACEBOOK facebook.com/AuthorMarleneRingler SQUARE-X-TWITTER @MarleneRingler LINKEDIN linkedin.com/in/dr-marlene-ringler/

Exceptional Needs Today | Issue 18 | 21

LEARNING STRATEGIES MENTAL HEALTH

Books And Play Are a Huge Influence for Learning Language

By Lavelle Carlson, MSLP

22 | Exceptional Needs Today | Issue 18

LEARNING STRATEGIES read to daily will enter kindergarten with far fewer hours of “literacy nutrition” than a child who has been read to daily from infancy.

Reading books in a fun way for children does three things: 1.

Social interaction combined with reading books and fun play provided by the caregiver gives children a head start in learning speech, language, and pre-reading. Listening to books daily, a child will hear animal sounds, speech sounds, and language. This is very evident in the story Corky the Quirky Cow and the Cuckoo Concert. When listening to the book, the children learn animal sounds that will later translate into manipulating speech sounds for reading. Young children will understand that they see a cow but hear “moo.” In the same way, later in school, they will be able to associate, “I see the letter ‘b,’ but I hear the sound /b/.

2.

Another asset of caregiver book reading to the child is that the child who has been reading books about farm animals will associate the word cow with the picture of a cow even if they have not seen an actual cow on a farm.

This gives them the knowledge they would not have if they had not had books read to them. Associating words with pictures in one’s mind (visualization) increases reading comprehension later.

3.

Another important aspect of reading beyond learning words, language, pre-reading, and knowledge is socialization, empathy, kindness, and dealing with daily problems. Look at the old fairy tale of Little Red Riding Hood. That story was filled with words to warn little children of strangers. Books written today do that as well.

For instance, in the book Do Not Snuggle with a Puggle, Wally, the wallaby, had to learn the hard way to be careful with whom he could trust, just like Little Red Riding Hood.

B

ooks are so important for learning. But before discussing books, it is important to discuss how children learn words and language. Then, we will consider how to use books to facilitate this learning.

Children are born with an innate ability to learn language.

However, several things must happen for a child’s language to thrive.

1.

They hear words.

2.

They hear the same words repeated many times.

3.

They hear words related to a person or thing.

4.

Emotion must be attached to the words.

What are the stages of words and language development?

1. Babbling and cooing 2. Creating repetitive sounds that have meaning, as in “dada” and “mama” 3. Combining words (more milk) and creating short sentences (“go park” for “go to the park”). The grammar aspect of language will kick in later (subject + verb + object, as in “I want milk.”

Parents and caregivers are crucial for setting their children up for success in literacy. Yes, television will give children access to sounds and language. However, the parents and caregivers are more important. Why? The parents/caregivers will respond to the babbling in a personal and loving way—smiling, pleasant physical loving, and a back-and-forth babble. They will teach back-and-forth communication in which one says something and the other responds.

Okay, here is the biggie! Books have a huge influence on learning language and preparing children for school. According to Brigham Young University, a five-year-old who has not been

How to choose books to read to children Consider books with the following elements:

• • • • • • •

Rhyming (Eek! I Hear a Squeak and Corky the Quirky Cow) Repetitive dialogue (Slowly Slowly Goes the Sloth) Large print Humorous (Corky the Quirky Cow) Bright Colors (Bee, Honey Bunny and Me) Not too much text on the page (Don’t Let the Pigeon Drive the Bus) Life lessons (Do Not Snuggle with a Puggle)

Reading tips: • Make reading an interactive experience. Use mini toys,

coloring pages, cut-outs, and games like mazes. These can often be downloaded on the author’s website.

Exceptional Needs Today | Issue 18 | 23

LEARNING STRATEGIES

• •

Choose books of interest to the child

•

Point to words, particularly those that represent sounds.

For instance, in Corky the Quirky Cow, point to the word “moo” as you read the sentence that has it. Pause and wait for the child to respond.

•

Allow children to help turn pages as that teaches them the directionality of page turns.

Wordless books can also be effective, depending on the child and the adult reader

On a side note – caregivers and teachers should always remember that not every child is drawn to books. Here are a couple of suggestions for those who are not drawn to reading:

•

Allow the child to choose books on topics that interest them. For example, if they like tractors, choose a book that

features tractors/farm equipment like Corky the Quirky Cow.

•

Make story time interactive. Use some of the ideas I’ve previously mentioned and, occasionally, ask the child, “What do you think ______ will do on the next page.”

•

Expanding on point 2: Allow the child to turn the page.

Ask the child what will be on the next page. Download activities and coloring books related to the storybook from teaching sites or check to see if the author provides coloring pages and downloadable activities on a subscription website https://www.slpstorytellers.com/ register-2/.

Learning to read begins early and is facilitated by children hearing books read to them daily by caring caregivers. Read, read, read, and play today!

Lavelle Carlson is a retired speech/language pathologist. She began her studies at the University of Tulsa, was married, and then traveled the world, living in England for one year and Norway for nine years. She lived in several states after returning from overseas. It was at that time that she went back to school in Oklahoma, receiving her Masters in Speech/ Language Pathology at the University of Tulsa. When she began working with young children, she began writing for speech and language. After her retirement in Texas, she has continued to write poetry for her own satisfaction and children’s storybooks to, hopefully, increase literacy in young children. She also continues to develop materials for her website to provide inexpensive teaching materials for speech/language pathologists and teachers 🌐 slpstorytellers.com

24 | Exceptional Needs Today | Issue 18

EXCEPTIONAL EDUCATION

Empowering Students with Autism through Educational Advocacy

By Jake Edgar, MS

N

avigating the educational landscape can be particularly challenging for students with autism spectrum disorder (ASD) and their parents. From ensuring access to appropriate resources to fostering understanding among educators and peers, educational advocacy plays a crucial role in supporting these students. By collaborating with flexible school systems, parents can build a support system that is best for their students' academic needs and beyond.

Educational advocacy highlights the collaboration between educators and parents to serve students who need attention, accommodation, and adaptability. To understand how educational advocacy can empower students with ASD, it is important first to understand the risks of staying silent on their development.

Staying silent Many students with autism struggle to succeed in educational environments that assume they can learn with the same

attention as neurotypical children. Without proper advocacy, they may struggle to succeed in environments that do not account for their specific strengths and challenges. Challenges students with ASD may face inside the classroom include:

• • • •

Difficulty engaging and socializing with peers Experiencing sensory overstimulation Cognitive difficulty with understanding course material Facing unexpected changes in routine

By not addressing the challenges of a traditional learning environment proactively, students with ASD may experience long-term consequences in their skill development. This neglect can result in academic frustration, social isolation, and diminished self-esteem. Many students with ASD require support in traditional educational systems to reduce the barriers they face and foster their academic and personal growth effectively.

Exceptional Needs Today | Issue 18 | 25

EXCEPTIONAL EDUCATION In summary, educational advocacy ensures that students with special needs receive the best education tailored to their unique abilities and aspirations.

Individualized Education Plan, or IEP Structured expectations can greatly benefit students with autism. A classroom environment with supportive practices can provide that opportunity.

An Individualized Educational Plan, known as an IEP, can provide your student with the most practical care for them. An IEP serves as a formal contract between the parent of a student and the school the child attends. The general objective of an IEP is to set learning goals for the student, understand the student’s needs and limitations, and clarify what services the school will provide for that student. IEP goals for students with ASD can include:

Avenues for educational advocacy Effective educational advocacy involves collaborative efforts to ensure the student's needs are met. One way educational advocacy can be utilized for students with ASD is through creating an appropriate educational plan tailored to their best interests. Another avenue for educational advocacy consists of staying aware of special education laws and policies to ensure students with ASD receive the necessary support and accommodations.

• • •

Educational and learning requirements Social and communication goals Behavioral and emotional needs

Parents of children who struggle with ASD should contact their school about an IEP as early in the child’s educational career as possible. When attending meetings for an IEP agreement, parents should consider the ability and skill of the school's special educator(s) to meet their students' needs.

Students in special education tend to benefit significantly from educational advocacy for the following reasons:

If an IEP seems more assistance than your student needs, a 504 plan is another potential avenue (more on this option below).

•

Advocacy is crucial for students with an IEP during meetings.

Here are some reasons why:

•

•

•

•

Tailored support: Educational advocates work closely with students, parents, and educators to meet individualized needs. They help create personalized learning plans, identify appropriate accommodations, and address any barriers to learning.

Navigating systems: Special education can be complex, involving various legal and administrative processes.

Advocates guide families through these systems, ensuring they understand their rights, options, and available resources.

Promoting inclusion: Advocacy encourages inclusive practices within schools. By advocating for accessible classrooms, adaptive technologies, and supportive environments, students can fully participate in academic and social activities.

Building self-advocacy skills: Advocates empower students to express their needs, preferences, and goals. As students learn to self-advocate, they gain confidence, independence, and a sense of ownership over their education.

Enhancing communication: Effective advocacy fosters open communication between students, parents, teachers, and school staff. When everyone collaborates, students receive consistent support and encouragement.

26 | Exceptional Needs Today | Issue 18

•

Empowerment and self-advocacy: When students actively participate in their IEP meetings, they learn to advocate for their specific educational needs. This empowerment fosters self-advocacy skills, which are essential for their future success.

•

Understanding and ownership: Students who understand their IEPs are more likely to work toward accomplishing their goals. By participating in the process, they gain a deeper understanding of their classification, modifications, and accommodations. This ownership leads to better outcomes.

•

Post-secondary transition: Active participation during IEP meetings correlates with positive post-graduation outcomes. Students who engage in their IEP discussions are more likely to be employed or enrolled in higher education after graduation.

•

Individualized approach: Advocacy ensures that the student’s unique needs, abilities, and goals are considered.

It allows for tailored support and accommodations, promoting a more effective learning experience.

EXCEPTIONAL EDUCATION Remember, involving students in their IEP meetings is a powerful way to promote their growth, self-awareness, and educational success.

504 Plans Students who can participate in a general education setting with their peers but may need some accommodations could benefit more from a 504 plan. With a 504 plan, students with autism attend regular classes, only receiving support as necessary. For example, accommodations provided by a 504 plan may include:

• • • •

Assistance carrying school supplies Larger fonts on coursework for accessibility More time on tests Preferential seating to reduce distractions

Unlike IEPs, parents are not as involved in the decision-making.

504 plans vary by state and school district and are determined based on the student’s diagnosis; however, both 504 plans and IEPs can be reevaluated and readjusted as needed.

If your student with ASD would benefit more from another resource, alternatives like involving students in behavioral intervention services, employing occupational therapy, or other support systems might be necessary. Parents should research the resources available to them and reach out to their community for recommendations.

Special education laws Special education laws ensure schools across the country provide care for students with learning disabilities. The most notable one is the Individuals with Disabilities Education Act (IDEA). Parents of children with special needs should become familiar with special education laws.

Knowing the laws for special education is essential for effectively advocating for the rights of children with ASD and ensuring they receive the appropriate support and accommodations in school. For example, IEPs should be a collaborative effort between parents and educators in which both parties agree on the best practice for that student. The final IEP should be high quality and reflect the student’s needs. Parents of children with ASD should check each state’s

Remember, involving students in their IEP meetings is a powerful way to promote their growth, self-awareness, and educational success. procedure for filing a dispute if the school system does not comply with special education laws.

Not every student can learn the same way within general education, so empowering students with ASD through educational advocacy can significantly impact their well-being.

By advocating for tailored support and accommodations, students with ASD can pursue equitable access to education and opportunities for growth. This proactive approach not only enhances their academic progress but also fosters a supportive environment where they can thrive.

Springbrook Autism Behavioral Health offers special education for children and adolescents with ASD using applied behavior analysis-based treatments. Contact Springbrook to learn more.

References Al Jaffal, M. (2022). Barriers general education teachers face regarding the inclusion of students with autism. Frontiers in psychology,13, 873248. deBettencourt, L. U. (2002). Understanding the differences between IDEA and Section 504. Teaching Exceptional Children, 34(3), 16-23.

Gargiulo, R. M., & Metcalf, D. (2015). Teaching in today's inclusive classrooms. Cengage Learning.

Kurth, J. A., Love, H., & Pirtle, J. (2020). Parent perspectives of their involvement in IEP development for children with autism. Focus on Autism and Other Developmental Disabilities,35(1), 36-46.

Mulick, J. A., & Butter, E. M. (2002). Educational advocacy for children with autism. Behavioral Interventions: Theory & Practice in Residential & Community-Based Clinical Programs,17(2),57-74.2 Ruble, L., McGrew, J., Dale, B., & Yee, M. (2022). Goal attainment scaling: An idiographic measuresensitive to parent and teacher report of IEP goal outcome assessment for students with ASD. Journal of Autism and Developmental Disorders, 1-9.

Wangmo, K., & Wangmob, T. (2021). Lived-Experiences of Parents’ Involvement in Individual Education Plan Development for a Child with Autism Spectrum Disorder. European Journal of Medicine and Veterinary Sciences-Novus,2(1), 33-63.

Jake Edgar is the Director of Education at Springbrook Autism Behavioral Health in Travelers Rest, South Carolina.

Jake began his career at Seneca High School as a Special Education Teacher, directing the Transition to Independence Program. This program works with students with severe intellectual delays to develop adaptive, functional, and employment skills to help them lead independent and successful lives. Jake oversees all educational services Springbrook provides and leads the educational team to provide the individualized education and curriculum the students need to succeed. In 2021, Jake founded the Carolina Special Education Advocacy Group. This group works to provide advocacy to families to guide them through different processes, such as Individualized Education Plans and other areas where support is needed. 🌐 springbrookbehavioral.com

Exceptional Needs Today | Issue 18 | 27

EXCEPTIONAL ADVICE FROM

MESHELL

Helping The Exceptional Parent in Denial

By Meshell Baylor, MHS "The attempt to escape from pain is what creates more pain."

– Gabor Maté –

T

here is a joy in loving your child every day you watch them grow and transition from one milestone to another; it almost feels like watching a miracle daily. It is a journey of watching them reach one level of growth to another, from saying their first word, taking their first steps, and actively playing with you. These milestones are huge to a parent, but there are also times when a child has yet to make those milestones happen, and the exceptional parent becomes worried.

a need for screenings or interventions. When a child is not meeting those developmental benchmarks, they are assessed, screened, and evaluated. In the middle of gathering data, trying to remember when your child did any form of a milestone, a sense of grief and denial can impact a parent. It is common for a parent to feel there is nothing wrong and their child is perfect, but not allowing them to accept a diagnosis can be challenging for the parent or caregiver to overcome.

According to the Centers for Disease Prevention and Control (CDC), milestones are considered a checklist to help identify

Denial is defined as the action of declaring something untrue.

There are times when a parent struggles to come to terms with

28 | Exceptional Needs Today | Issue 18

FAMILY SUPPORT the fact that their child may be unique. They tend to challenge what the professionals say and not heed the warning signs of what family members and close loved ones are trying to say in advocating for the wellbeing of the child. The parent/caregiver is often trying to fight against the diagnosis because they are in a state of shock. Many times, loved ones and professionals see the warning signs of developmental delays before the caregiver does, and some families decide to turn a blind eye to their child's delays. If you are a family member or caregiver who wants to help ease the parent or guardian into the transition of acceptance, here are some tips.

1. Be receptive In addressing the concerns of advocating for your exceptional loved one and parent, the best answer is to talk to them about their feelings and be open and receptive to their dialogue.

2. Be supportive Never force a parent into acceptance if they are still coming to terms with the idea that something may or may not be impacting their child.

3. Be respectful Every parent is different when going through a particular stage. Learning how to navigate the next step in forming an intervention is challenging. So, be receptive to their concerns, be supportive of their decisions, and be respectful when addressing any form of concern. This is not easy, so try to be respectfully delicate when helping.

4. Be resourceful Learning how to track your child's milestones and developmental stages can be challenging. For resourceful information, such as the Ages Stages Questionnaire (ASQ), check the CDC, or consult your primary care physician.

5. Be present Sometimes, there is power in just being present. Being present might involve attending the child's doctor appointments, sitting with them when they get the news of a diagnosis, and encouraging the parent by being their soundboard. Be present when they go to their local agencies for assessments; the goal is to be there so that they do not feel alone.

6. Family intervention While being present, it is okay to establish a family intervention for the exceptional parent. It is okay to let them know that whatever they may feel in the presence of trying to navigate which steps to take for their child, they are loved. There are no expectations to be placed upon them nor judgment; allowing them to see the many faces of their village is the biggest support any parent can receive.

When we rest in a state of denial, it can hold the ones we hold dear back from receiving the support they need. The initial response to detect, react, and advocate for your child is being a caring guardian. When questioning whether a child is making developmental milestones, keep a notebook of their milestones, record them, and find activities online that you can use at home to ensure they are on the right track. Take comfort in knowing that being alert, assertive, and supportive of your loved ones does not make you a bully but an ally. Caring about the needs of your exceptional family is considered a high priority, so if you are a caregiver or aunt who identifies a concern the parent has yet to see, speak up. When a milestone is not reached, it is not the end of the world. It only means that we need to work on it, evaluate it, and implement strategies to help the child achieve it.

It is considered a red flag when a child is not sitting up, talking, or making any connection. The red flag is not bad but a notice to act accordingly. As a parent of two children on the spectrum, there were times that I as a parent did not see the warning signs when my sister did. In my eyes, my child was healthy, but he had limited eye contact, and he was not speaking or conveying his wants and needs. I was enraged when my sister, a special education professional, said he needed an assessment. Like many parents who struggle with the denial stage, I stayed in a state of denial and shock. It took time to say the word “assessment” without bursting into tears. Once we identified my child’s autism, I looked and noticed my village was there to support every decision and action I took to help my exceptional child achieve every developmental milestone.

Remember, it takes a village to raise a child.

References and Resources CDC's Developmental Milestones https://www.cdc.gov/ncbddd/actearly/milestones/index.html ASQ.-3 Ages and Stages Questionnaires https://agesandstages.com/products-pricing/asq3/

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. 🌐 meshellbaylor.wixsite.com INSTAGRAM @imalittlebigb 🌐 Center for Autism and Developmental Disabilities

Exceptional Needs Today | Issue 18 | 29

30 | Exceptional Needs Today | Issue 18

EXCEPTIONAL ADVOCATE

An Autism Diagnosis is Not a Label; It’s Life’s Ultimate Cheat Code

By Jeremy Rochford TI-CLC, C-MHC, C-YMHC

Up-Up. Down-Down.

Left-Right.

Left-Right.

B-A Start….

Growing up in the 80s and 90s, there weren’t too many things that mattered more in my life than playing Nintendo after school and on the weekends. One game in particular, Contra, was my absolute favorite. Beyond its spectacular gameplay and the purely awesome 8-bit graphics, Contra had something genuinely unique to offer.

It was the first game I ever experienced that came with a cheat code.

A cheat code?

Yes, a cheat code.

And not just any cheat code, but the most epic of cheat codes ever!

If you entered the keypad sequence up, up, down, down, left, right, left, right, B, A, start at the main menu as it was “booting” up, you would begin the game with 30 lives.

Think about that: when most Nintendo games started you off with a measly three lives, finding a way to 10x your existence was pure magic.

Especially in a game where you’re being shot at.

If we relate that to being an “adult,” imagine going to get your paycheck, and it’s 10 times what it’s supposed to be because someone taught you a more creative way to enter your bank’s log-in and passcode.

You’d feel pretty good about your current situation, right?

Right indeed!

But, alas, those were simpler times.

And as my childhood gave way to my 20s, which gave way to my 30s, which now has given way to my 40s, I’m not going to lie; there are times I wished for a cheat code to become a better parent, spouse, and overall adult.

Unfortunately, it seems one doesn’t exist.

Yeah, sure, there’s the lottery. But let’s be honest, if you’re bad with money, having more of something you’re bad at isn’t going to make you better. So, playing “Grandma’s lucky numbers.” isn’t a sustainable “cheat code” strategy.

But then, my children entered the conversation.

First came my son’s autism diagnosis, which led my wife and I to start exploring a world we knew very, VERY little about.

And, while trying to understand better our son’s diagnosis and how to best parent him within it, we started to notice a lot of similarities between our daughter’s behavior and what was being quantified as ASD-1 or Asperger’s syndrome.

Needless to say, we were growing more intrigued.

So, we decided it might be helpful to get her tested as well, and within a few minutes of her appointment, we discovered that both our children were on the spectrum.

Apparently, we had unlocked the bonus level of parenting!

If I’m being honest, I was a little taken aback at first, like most people who would find themselves in this situation. It was a smidge overwhelming to realize that 98% of the parenting resources I’ve ever read, watched, and consumed were now irrelevant because you cannot parent a neurodiverse child the same way you would parent a neurotypical one.

It’s not better, it’s not worse, it’s simply different.

With that reality now evident, my feeling(s) of overwhelm started to fade because having a diagnosis FINALLY gave us a clear path on how to parent our children in a way that best suits their needs, emotions, and strengths. Interestingly enough, though, the more I learned about my children, the more I began to learn about myself. The more answers I had Exceptional Needs Today | Issue 18 | 31

EXCEPTIONAL ADVOCATE about their behaviors, the more questions I had concerning mine. And the more I recognized the traits of autism in my children, the more I noticed similarities in me.

This begged the question: Am I autistic, too?

With all the evidence that suggested it, I felt I owed it to myself to get tested as well.

If only for my peace of mind.

So, I did, and the result would show that I’m autistic as well.

I’m not going to lie; there were certain things I expected to happen in my 40s: bifocals, a slower metabolism, and the music of my youth creeping into “classic rock” playlists. But an autism diagnosis? This was not something I planned for.

However, upon receiving it, almost every aspect of my life has improved.

My marriage is better.

My job is better.

My parenting is better.

EVERYTHING IS BETTER! Why? Because I finally understand why I am the way I am.

Why can’t I sit still for even a second without tapping my fingers, hands, or feet?

I now know why!

Why do I get headaches after hours of being in front of, or around, people for sustained periods of time with the immense need to “walk it off” afterward?

For years, I questioned certain things in my life that never seemed to make sense. But now, seeing these “quirks” and “behaviors” through the lens of special interests, stimming, and selfregulation allows me to make sense of so many things in my life.

It makes me feel normal—maybe not typical, but normal. More importantly, it helps me know that I’m not alone. I’m not weird.

I’m not broken. I belong to a tribe of like-minded people. I have a “standard operating procedure.”

More importantly, I FINALLY HAVE LIFE’S ULTIMATE CHEAT CODE! Because I finally understand how to put myself in places where I can get the best out of myself and how to avoid situations where the outcome won’t be in my favor. More importantly, I know “why” to so many questions. And the peace of having that kind of direction is beyond measure.

I literally cannot express in words the reduction of anxiety and stress in my life that has come since I discovered my place on the spectrum.

I genuinely view my diagnosis as life’s ultimate cheat code, and I can’t wait to see what happens from here.

I’ve never felt more complete, at peace, or excited.

I don’t know where you’re at when reading this. I’m not sure how you’re struggling with what autism is and the way it might affect you.

Maybe it’s a child, maybe it’s a parent, maybe it’s a spouse, maybe it’s a loved one, maybe it’s you.

Regardless of the “maybe,” if you’re concerned, I can assure you of this: my diagnosis doesn’t define me or make me deficient in any way.

I now know why!

It simply gives me a baseline of understanding that I’m a MAC in a PC world.

Why do I have such a deep fascination with NASCAR and their die-cast cars, even though I was born in Pittsburgh, PA, to a family with no automotive aptitude?

And the last time I checked, MACs were responsible for many incredible things.

The neurodiverse are no different. Except for maybe in a few ways.

I now know why!

In other words, I finally have a basis for why I am the way I am and why I act the way I do.

The greatest thing is that we’ve got the Cheat Code.

How will you use yours?

Jeremy Rochford, TI-CLC, C-MHC, C-YMHC, has his BA in Communications (California University of PA) and is a Trauma Informed Certified Life Coach who specializes in helping Neurodivergent and Neurodiverse Families understand communication, culture, and their own unique family dynamic. He is a parent of two Neurodivergent children, as well as having his own later in life autism/ADHD diagnosis. Together with his wife Charity, they've founded NeuroFam to support other ND/NT families through the intricacies of navigating life in a world that (far too often) doesn’t understand their struggles. 🌐 OurNeuroFarm.com ✉ Jeremy@OurNeuroFam.com YOUTUBE youtube.com/watch?v=3hEPXNBFD5Y

32 | Exceptional Needs Today | Issue 18

How Can a School Counselor Assist My Child with a Disability?

By Dr. Ronald I. Malcolm, EdD

M

any children with a disability attend public schools with their non-disabled peers. They encounter the regular everyday issues that all children deal with daily. However, other issues may be specific to the nature of their disability that must also be addressed.

Here are 10 ways a school counselor can assist children with disabilities and their caregivers.

1. Unrecognized source of assistance The School Counselor is often an unrecognized source of assistance for children with disabilities. Involving them in a child’s Individualized Education Plan (IEP) meeting can allow them to hear the specific difficulties the child may be encountering during the day. It can also allow the school counselor to obtain the necessary permission from the parent or guardian to begin seeing the child and working with them on improving their situation at school and home.

34 | Exceptional Needs Today | Issue 18

2. Copying strategies Social skills can often be challenging for children with disabilities. They may feel intimidated or inferior to their non-disabled peers. School counselors can offer children with disabilities a means to “vent” or discuss their feelings in a safe and caring environment. They can also offer them various coping strategies to encounter issues successfully during their school day.

3. Community resources Many parents can become frustrated or overwhelmed with the daily needs of their child with a disability.

They often spend their energy attempting to locate the information they require for various community resources.

School counselors are an excellent source of information for community resources. Much time can be saved by

EXCEPTIONAL EDUCATION connecting to the school counselor and locating the required community resources.

4. Self–advocacy Young people with disabilities must acquire the skills to selfadvocate. They need to know the name of their disability and be able to state what accommodations they require to be successful. A school counselor can assist the child in roleplaying various situations and allowing them to practice their self-advocacy skills. They can also provide specific feedback on how to improve their self-advocacy skills.

5. Classroom presentations Some of the daily issues impacting a child with a disability may be a result of a lack of understanding or belief in various myths surrounding individuals with disabilities. A school counselor can work with teachers to provide in-class presentations to non-disabled students. This can assist with dispelling those various myths or beliefs. This can also share their insight with non-disabled children about the obstacles that students with disabilities encounter in school. Such presentations can open the doors of communication between non-disabled students and those with disabilities so they can better understand each other.

6. Group counseling School counselors can arrange and conduct group counseling sessions. Involving the child with a disability in group counseling can open social situations for them with their peers. Not all group counseling sessions need to focus on the issues of disability. Not everything in the child’s life surrounds their disability. Group counseling sessions can focus on sibling-related issues, divorce, dealing with depression, etc. Such sessions can assist the child with understanding that, regardless of their disability, there are other students struggling with various issues at school. In addition, peer support programs can be developed that assist children with disabilities in meeting other students with disabilities or non-disabled peers with whom they can develop friendships.

7. Bullying Many students with disabilities report being victims of

bullying while attending school. School counselors can become a sounding board for a child with a disability to reduce their daily stress and anxiety by allowing them to share their experiences freely. The school counselor can also teach children strategies to deal with bullying and how to report it to the authorities at school.

8. Selection of classes/clubs The school counselor can encourage the child with a disability to think outside the box and try enrolling in classes that might interest them. They can also work with the child to motivate them to join a club, sport, or extra-curricular activity at school to broaden their social interests and interactions.

9. Ensuring accommodations Many students with disabilities bond with their school counselor. They can become the professionals at the school they attend when they are not receiving the accommodations they require in the classroom. While some students with disabilities have access to special education teachers, others do not. A school counselor can help by mediating a conversation between the child and their classroom teacher. They can also assist in ensuring that a high school student with a disability receives their necessary accommodations when engaging in state assessments and ACT/SAT testing.

10. Post-secondary options Many young students with disabilities struggle with making decisions about their career options after graduating from high school. School counselors can administer career interest inventories to assist students with better understanding what careers might be better suited for them. They can also help children with disabilities complete the necessary paperwork to apply for vocational school or a university.

School counselors are experts in navigating the route to ensure the necessary paperwork is completed for applying for scholarships, seeking student loans, touring a university program, and applying for FASFA. Finally, school counselors can demonstrate how to seek the appropriate assistance from Disability Services on campus.

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

Exceptional Needs Today | Issue 18 | 35

SAFETY GOALS WITH

NICOLE

REDUCING THE RISK OF ABUSE WITH CHILDREN WITH DISABILITY

Making Our Season Bright Easing Holiday Stressors for Children with Exceptional Needs

By Nicole Moehring

A

h, the holiday season. How many people dread its arrival? Not because we don't enjoy the holidays but because of the additional stress of parenting a child with a disability. I love decorating and shopping for the holidays, and the aroma of pine and cinnamon fills the air. I want to acknowledge that I keep holiday music playing in my car from the beginning of the holiday season until the day after Christmas. I really enjoy it! However, my son has a hard time with crowds and gatherings.

Any deviation from his usual routine leads to overstimulation, meltdowns, and heightened anxiety. This situation is extremely stressful for me because I never know how my son will behave or when he will react to something. Add that to the societal expectations and the pressures we put on ourselves, and our anxiety skyrockets. I'm sure that this resonates with anyone reading. And as much as we wish we could partake in the typical Thanksgiving and Christmas festivities, we aren’t always able to.

Children with disabilities can feel overwhelmed during the holidays, even before reaching their destination. Their routines have already changed, making it difficult for them to adapt to new surroundings. When parents are stressed, children can often pick up on that tension. It's crucial for us to try to remain calm and take a few minutes each day for ourselves. This self-care is not a luxury but a necessity that can help us better manage our children's stress.

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When parents are stressed, children can often pick up on that tension. It's crucial for us to try to remain calm and take a few minutes each day for ourselves.

Here are some tips to make your family's holiday season a bit brighter:

1. Managing meltdowns Be aware of the needs of the child. This sounds simple, but during the holidays, it can be difficult to remember. If you are going to a store, visiting family, or going to a friend's house and you know your child could have a meltdown or be triggered by something due to a past event, try to prepare them in advance if you can. Explain to the child, in terms they can understand, based on age or cognitive level, where you are going. Depending on the child, talk about each stop you make if you have more than one. This helps eliminate the element of surprise and allows the child to anticipate the situation.

SAFETY STRATEGIES

2. Decreasing anxiety Just by disrupting a child’s routine, anxiety can be caused.

This can cause problems with loss of appetite, upset stomachs, headaches, or behaviors. If you can, talk to the child and prepare them in advance. Come up with a signal between you and the child if they ever feel uncomfortable and want to leave. Remember to honor that if they ever use the signal. Otherwise, they are going to feel very slighted by you.

3. Respecting personal space Never force children to hug someone they don’t want to.

We must teach children from a young age about consent and boundaries; forcing them to hug someone sends conflicting messages. Give children alternative ways to greet and say goodbye to people. For example, they could use simple gestures like a fist bump, a high five, or words such as hi, hello, bye, or goodbye. Children need to learn that they have control over their bodies and choices.

4. Reducing sensory overload Lights, trees, bells, candles, and decorations are beautiful for most of us. However, for individuals with disabilities, these things can be overwhelming and cause sensory overload.

Going to the mall or shopping can also be overwhelming for a child, as can seeing Santa Claus. Decorate the house gradually to reduce sensory overload for children. Avoid flashing or twinkling lights. Choose less crowded times if you need to go to the mall or shop with a child. If they feel overwhelmed, create a quiet space at home.

As the parent of a child with disabilities, our days are full and unpredictable. There are many times when we are unable to enjoy events and occasions due to stress and heightened anxiety. However, by making time for self-care, planning ahead, having open conversations with our children, and creating personal space for them, we can make our season brighter.

Nicole Moehring’s daughter and son, who has autism and Fragile X Syndrome, were both victims of sexual abuse. As a mother suffering through this unbelievable nightmare, Nicole witnessed extreme differences in the justice system in terms of how her daughter was believed and treated so well and how her son was not. In addition, she recognized the distinct differences in recovery, trying to find support and resources. Nicole and her daughter Maci founded Voices of Change 2018 (VOC18), a nonprofit organization, to begin making much-needed change for children with disabilities and their families.

VOC18 is a disability-led national organization piloting our groundbreaking programs in Ohio. Their mission is to reduce the risk of abuse, neglect, and exploitation of children with disabilities. By sharing their lived experiences and through collaborations with law enforcement, mental health, medical professionals, and other similar organizations, they are building a foundation of advocacy, awareness, education, resources, and support for children with disabilities and their families. 🌐 voicesofchange2018.org SQUARE-FACEBOOK facebook.com/voicesofchange2018/ LINKEDIN linkedin.com/company/voices-of-change-2018 Pinterest: pinterest.com/voicesofchange2018/_created/ ✉ info@voicesofchange2018.com

Exceptional Needs Today | Issue 18 | 37

THE FRIENDSHIP & DATING DUO

Conquering Social Shame to Build Your Social Life

By Jeremy and Ilana Hamburgh

A

ll our clients are autistic or neurodivergent adults, and when we ask why they are feeling stuck, one of the big themes is shame. Whether it's the shame of being unemployed or underemployed, living with your parents, struggling with small talk, not being the best-looking person in the room, or not having relationship experience, these feelings are real and painful.

As a neurodivergent individual, you look around at your peers, neurotypical and otherwise, and see that you don’t have what they have. They’re hanging out with their “tribe,” going out with friends, and spending time with their romantic partner. But for you, just “putting yourself out there” can feel scary. Shame can do that!

It's important to acknowledge that feeling shame makes you human. You’re certainly not alone in feeling that way but knowing that others share your struggle is hardly a good feeling.

Shame is real and human The shame you feel is a reflection of how badly you want to belong. You want good friendships, romantic relationships, and a sense of community. When you feel like there’s some aspect of yourself that’s a barrier to those goals, it can paralyze you.

Feeling frustrated that your life isn’t exactly what you want is okay. That’s deeply human, too. There’s no need to pretend that your frustrations don’t exist. If you don’t have the job you want, the living arrangement you want, the fluid conversations you want, the looks you want, or the relationships you want, you don’t have to minimize that.

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You can overcome shame The good news is that you can overcome much of the shame that’s stopped you from meeting the people who belong in your life. It just takes the right coaching and support. There are powerful strategies that can help you be more confident in who you are.

The good news is that you can overcome a lot of the shame that’s stopped you from meeting the people who belong in your life. It just takes the right coaching and the right support.

One of the best strategies is to change how you talk about yourself. Of course, you don’t want to talk about being unemployed! But nobody says you need to use the “U Word.” There are wonderful ways to “spin” your unemployment into a story that can help you spark a connection. This is one of our favorite aspects of working with our clients.

SKILLS FOR LIFE We also know there’s no substitute for addressing your feelings of shame with a therapist or mental health professional. Shame thrives in isolation, so there’s incredible value in addressing it in various ways. As they say, “Teamwork makes the dream work.”

The joy of connection is worth it Having a social life that sparks your joy can be truly transformative. It’s such a beautiful thing when you wake up knowing you have a “tribe” where you belong, friends you can call, and maybe even a romantic partner you can spend time with.

The path isn’t always easy, but it doesn’t need to be complicated. There are simple, straightforward ways to turn your strengths into superpowers and bring them out into the social world. You may not be able to eliminate all your feelings of shame, but with the right strategies and support, you can conquer them to the point that they don’t paralyze you. And once you do that, anything can happen!

You may not have those things now, but that doesn’t mean they aren’t in store for you, and when you do, it can feel like a weight has been lifted off your shoulders. Social success can also have a ripple effect, boosting your confidence, increasing your self-worth, inspiring you to improve other parts of your life, and making the people around you happier.

Jeremy and Ilana Hamburgh are friendship and dating coaches who teach the strategies and skills that empower autistic and neurodivergent adults to find community, make friends, start dating, and build relationships. Ilana has over 16 years of experience as a special education teacher in New York City and is now the Director of Education for My Best Social Life. Jeremy has over 13 years of experience coaching autistic and neurodivergent adults on building the social lives they want and deserve. Jeremy and Ilana’s passion is their first-of-its-kind strategy and skills program, called Social Life 360. It’s an innovative program that teaches their autistic and neurodivergent clients the strategies and skills to confidently meet new people in new places, and they do it by decoding the social world using formulas, diagrams, and step-by-step processes that make more sense to a differently wired brain. The Social Life 360 program also provides clients with a warm, inclusive and exciting community that makes them feel embraced on their social journey. You can learn more about Jeremy, Ilana, and the Social Life 360 approach at MyBestSocialLife. com, and you can contact them about scheduling your family’s Strategy Session at Jeremy@MyBestSocialLife.com.

Exceptional Needs Today | Issue 18 | 39

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LEARNING STRATEGIES

Utilizing Music to Calm, Encourage, and Teach Children with Special Needs

By Karen Kaplan, MS Where words fail, music speaks. ― Hans Christian Andersen Music touches us emotionally, where words alone can’t. ― Johnny Depp Music produces a kind of pleasure which human nature cannot do without. ― Confucius

I

believe we have all experienced the effect music has on our emotions. We hear a fun song, and our feet start tapping.

We hear a special rhythm, and our bodies start swaying. We hear a band playing, and we want to dance. We hear a familiar song, and the words just return with memories. Sometimes, a song brings up tears and allows us to release stuck feelings.

Some of us create special music playlists and enjoy them when we travel to work or school or sit quietly in our backyards.

Some of us play soft, soothing music to fall asleep at night.

Some families with children with autism or other neurodiversity explore music therapy to help support them. Some schools offer music therapy to help their students engage in their education.

The American Music Therapy Association states, “Music therapy is the clinical and evidence-based use of music interventions to accomplish individualized goals within a therapeutic relationship. Music therapy interventions can address various healthcare & educational goals: (Promote Wellness, Manage Stress, Express Feelings, Enhance Memory, Improve Communication).”

Here are some activities you might want to try using music to teach, reach, and calm:

•

If a child is anxious in large crowds, create a playlist of favorite tunes and let them put on earphones and listen. If they ride the school bus, perhaps music can reduce anxiety.

Exceptional Needs Today | Issue 18 | 41

LEARNING STRATEGIES

•

Find books with songs to teach nursery rhymes and sounds made by vehicles and animals.

Suggestions: Amazon.com: World of Eric Carle, Around the Farm 30-Button Animal Sound Book - Great for First Words - PI Kids: 9781450805759: PI Kids, Editors of Publications International, Eric Carle: Books; Five 4-Wheeled Friends - Children's Touch and Feel Sound Book with Vehicle Sounds: Little Hippo Books, Claire Fennell: 9781955044028: Amazon.com: Books

•

Find books that teach different types of music.

Suggestions: Amazon.com: Welcome to the Symphony: A Musical Exploration of the Orchestra Using Beethoven's Symphony No. 5: 9780761176473: Sloan, Carolyn, Williamson, James: Books; Amazon.com: Welcome to Jazz: A Swing-Along Celebration of America’s Music, Featuring “When the Saints Go Marching In”: 9781523506880: Sloan, Carolyn, Gibson, Jessica: Books

•

Perhaps connect with a music therapist and explore ways they can help reduce anxiety, teach music skills, or expand motor skills and communication skills.

Suggestion: Bay Area Music Therapy

•

Perhaps put on some dance music and teach the child some dance moves. Perhaps they can watch some special videos to get an idea how it all works, first. Maybe they can invite a friend over for a dance party.

Suggestions: Pre-owned - Dance Party Fun, DVD - Walmart. com; children dance videos - Search Shopping (bing.com)

•

After a hard day at school, encourage them to spend a little time in their room listening to calming and regulating music before they move to homework or other tasks.

•

If they have difficulty falling asleep, check out an application on the phone that plays music to prepare them for sleep.

Suggestions: Free Meditations for Sleep (insighttimer.com); Sleep | Spotify Playlist

•

To expand the child's appreciation of music, you might take the child to a concert or see a musical performed on stage at a local theater.

•

Sometimes, joining a drumming group can be a great way to release frustrations, or you can just buy some drums and let them beat after a frustrating day. Some view drumming as a way to meditate.

Suggestion: The Ultimate Beginner’s Guide To Mindfulness And Drumming (drumhelper.com)

•

How about a karaoke kit? They can go to their room and sing their hearts out or express their frustrations.

Suggestion: Amazon.com: mini kit karaoke

I hope you can see how music can help soothe, decrease frustration, enhance learning, and help support self-regulation.

I also hope you can see that it can expand knowledge, develop interests, and just be fun.

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

42 | Exceptional Needs Today | Issue 18

Your Child Just Got Diagnosed with Dyslexia,

Now What?

By Amir Arami, BSc, MEd

R

eceiving a diagnosis of dyslexia for your child is a moment of mixed emotions. You might feel relief at understanding the root of their struggles but also concern about what lies ahead. Dyslexia is a common learning disability that affects reading, writing, and spelling and can present challenges, but with the right support, children with dyslexia can thrive academically and personally. This article aims to help parents navigate the next steps after a dyslexia diagnosis, offering practical strategies, resources, and emotional support tips.

Understanding dyslexia Dyslexia is a neurological condition that affects the brain's ability to process language. It is not related to intelligence or vision problems. Children with dyslexia often have difficulty decoding words, which can impact their reading fluency and comprehension. Recognizing that dyslexia is a specific learning disability, not a reflection of a child's capabilities, is crucial in shaping your approach to support.

44 | Exceptional Needs Today | Issue 18

Immediate steps after diagnosis 1. Educate yourself Knowledge is power. Understanding dyslexia will help you better support your child. Here are some key points to start with:

•

Dyslexia basics: Learn about the symptoms, causes, and how it affects learning.

•

Myths and facts: Dispel common myths and understand the realities of dyslexia.

•

Resources: Utilize reputable sources such as the International Dyslexia Association, Understood.org, and local support groups.

2. Communicate with your child It’s important to talk to your child about their diagnosis in an age-appropriate and reassuring way. Emphasize that:

EVALUATION AND DIAGNOSIS

• • •

Dyslexia is just one part of who they are.

Many successful people have dyslexia.

They will receive support to help them succeed.

Building a support system 1. Work with the school Collaborate with your child’s teachers and school administrators to create a supportive educational environment.

•

Individualized Education Program (IEP): If eligible, an IEP will outline specific accommodations and goals tailored to your child's needs.

•

504 Plan: If your child doesn’t qualify for an IEP, a 504 Plan can still provide necessary accommodations.

•

Regular meetings: Schedule regular meetings with teachers to discuss progress and any adjustments needed in the support plan.

3. Encourage reading for pleasure Find ways to make reading enjoyable and stress-free.

•

Interest-based books: Choose books on topics your child loves.

•

Shared reading: Read together to provide support and model fluent reading.

•

Graphic novels: These can be less intimidating and more engaging for some children.

2. Seek professional help Consider working with specialists who can provide targeted support for your child.

•

Reading Specialists: They are trained in specific techniques to help dyslexic children improve their reading skills.

•

Tutors: Look for tutors with experience in multi-sensory structured language education (MSLE) methods.

•

Psychologists and therapists: These professionals can help address emotional or social challenges related to dyslexia.

Home support strategies 1. Create a positive learning environment Make home a supportive and encouraging place for learning.

•

Quiet study area: Ensure a distraction-free space for homework and reading.

•

Organizational tools: Use calendars, checklists, and planners to help your child stay organized.

•

Regular routine: Establish a consistent homework routine to provide structure.

2. Use assistive technology

Emotional and social support

Leverage technology to support your child’s learning.

1. Build confidence

•

Audiobooks: These allow your child to listen to books, which can improve comprehension and enjoyment.

• •

•

Children with dyslexia often struggle with self-esteem.

Focus on their strengths and celebrate their successes.

Text-to-Speech: Converting written text into spoken words, aiding in reading assignments.

•

Positive reinforcement: Praise effort and progress, not just outcomes.

Word processors: Use tools with spell-check and grammarcheck features to assist with writing tasks.

•

Highlight strengths: Encourage activities that your child excels in, whether it’s sports, arts, or other hobbies.

Exceptional Needs Today | Issue 18 | 45

EVALUATION AND DIAGNOSIS 2. Foster resilience

2. Encourage independence

Teach your child that challenges are opportunities to grow.

Gradually help your child take more responsibility for their learning and accommodations.

•

Growth mindset: Encourage a mindset that values effort and learning from mistakes.

•

Problem-solving skills: Help your child develop strategies to overcome obstacles.

3. Connect with others Find support networks for both you and your child.

•

Support groups: Join local or online groups for parents of children with dyslexia.

•

Peer connections: Encourage your child to connect with peers with similar experiences.

Working with educators • Effective communication and collaboration with your child's educators are essential.

•

Advocate for your child: Be proactive in discussing your child's needs and ensuring they receive the appropriate support.

•

Stay informed: Keep up with your child's progress and any changes in their educational plan.

•

Provide feedback: Share what strategies work at home to help teachers apply similar methods in the classroom.

•

Self-advocacy: Teach your child to understand their dyslexia and how to ask for help.

•

Study skills: Develop effective study habits and time management skills.

Conclusion Receiving a dyslexia diagnosis for your child is just the beginning of a journey toward understanding and support.

By educating yourself, building a support system, and implementing effective supports and strategies, you can help your child navigate their educational journey with confidence and resilience. Remember, dyslexia is just one part of who your child is; with the right support, they can succeed. Together, parents and educators can create an environment where children with dyslexia can thrive academically, emotionally, and socially.

Long-term planning 1. Prepare for transitions

•

As your child progresses through school, their needs and the support required may change.

•

Middle and high school: Plan for the increased academic demands and help your child develop self-advocacy skills.

•

College and beyond: Research colleges with solid support programs for students with dyslexia and explore career options that align with your child's strengths.

Amir Arami, BSc, MEd is an entrepreneur and the innovative mind behind Verbal AUTISM and Verbal Academic Support, apps designed to revolutionize how individuals with communication challenges learn and interact. With a background marked by resilience and determination, Amir’s journey began following a traumatic brain injury that set him on a path of discovery and innovation in the field of assistive technology. His academic pursuits, which include a bachelor’s in psychology and a master’s degree in special education, earned amidst personal health challenges, laid a strong foundation for his work in developing tools that are not just functional but truly transformative. At the heart of Amir’s mission is a commitment to inclusivity and accessibility. Verbal Academic Support AAC app reflects his deep understanding of the unique needs of non-verbal individuals, offering customizable and intuitive platforms to enhance learning and communication. Through his work, Amir Arami continues to inspire those around him, proving that it is possible to make a significant, positive impact on the world with compassion, innovation, and perseverance. 🌐 verbalautism.com SQUARE-FACEBOOK facebook.com/profile.php?id=61553835793985 INSTAGRAM @verbal_autism LINKEDIN linkedin.com/company/verbal-autism/ YOUTUBE @Verbal-Autism TIKTOK @VerbalAutism

46 | Exceptional Needs Today | Issue 18

MY WORD

Nature Notes

GOING DOWN A SENSORY PATH TO HELP CHILDREN REGULATE

By Amy Wagenfeld, PhD, OTR/L, SCEM, EDAC, FAOTA 48 | Exceptional Needs Today | Issue 18

S

ensory paths, walks, and stations are increasingly recognized as an important DIY tool to help children regulate their senses, particularly visual (seeing), tactile (touch), proprioception (awareness of where your body is in space), and vestibular (balance), interoception (internal regulation), and to enhance gross, large motor skills and coordination, fine small motor skills, decision making, and self-regulation. They are well-planned and defined walks, paths, or stations that invite children to try out various movement-based sensory activities.

There are several options for sensory walk stations and paths that can be installed at your home.

Sensory walks One kind of sensory walk (the terms sensory walks and paths will be used interchangeably) has icons typically painted onto asphalt or sidewalks. These icons are visual cues for children to move along the walk while doing various movement actions like feet spaced to encourage walking, feet oriented to walk sideways, a series of a right and then a left foot spaced to encourage hopping, two feet spaced to encourage jumping, hands touching each other encourage clapping, and a body bent over to touch toes. There may be green and red lights on the walk to cue children to go or stop and take a break.

The icons can be created to accommodate children who use wheelchairs—think of movements that your children enjoy or maybe those being worked on in therapy. Doing the movements on a sensory walk can be fun!

SENSORY STRATEGIES the graded challenge one; always looking to make it that much more challenging when it is appropriate to do so.

A note: the indoor version of a sensory walk could happen in a hallway (without carpet). Stickers are available online that you can adhere to flooring to create the walk.

Sensory stations Here is another idea to intentionally sensory up your yard.

Create one or more sensory stations, or what I like to think of as a well-planned stop along the way for your child to do some kind of themed activity or to rest and self-regulate. Your sensory station could be a garden bed with different types of sensory plants to explore and enrich their senses. Each station has a different plant-focused sensory experience with signage that tells your child what to do. The Paulding County Master Gardeners developed one example of a bright and cheery sensory station.

Paulding County Master Gardeners

O'Dell Engineering

The sensory station could also be themed to something that interests your child. If they like animals, the station could contain a bin of plastic animals and pots of soil or mud for the animals to play in. Touching the soil, digging, and transferring the soil from one bin to another enhance multiple sensory systems, not to mention fine motor skills and cognition.

These walks can be arranged as a loop or any other configuration that best fits the space it needs to occupy. You can create a customized sensory walk in your driveway or a sidewalk if either is available for your use and is level and safe in terms of access. Icons can be painted (or stenciled) onto a driveway for a more permanent walk, but I have an idea for a more transient option. With the help or not from your child, create a sensory walk using sidewalk chalk! The advantage of sidewalk chalk versus paint is that it can be drawn, played on, washed down, and redrawn. And, if you are always changing the walk, you can make it increasingly more complex as your child’s motor and sensory skills improve. Think of this option as

A sensory station could be designed as a quiet, shady, cozy corner in the yard where your child goes for self-regulation when they feel overwhelmed. This sensory station could contain weather-resistant pillows for your child to build a nest and feel comfy and tucked into.

Sensory paths Another option is to create a pathway in your yard. Before starting, think about whether your yard is level enough to accommodate a sensory path, as otherwise, you may be spending a lot of time trying to maintain it and less time enjoying it with your child.

A nature-rich sensory path will contain a series of different Exceptional Needs Today | Issue 18 | 49

SENSORY STRATEGIES experiences for your child to explore while going from start to end. Depending on your space, the path may be linear and have a clear start and stop point, or it may be a loop.

A lovely team effort led to the sensory path at Central Elementary School in La Grande, Oregon.

Here’s how you might build your sensory path.

A note: Design your child’s sensory path to meet their needs. The materials you use should be based on their ambulation status and how they will most comfortably and safely navigate through the path.

• •

Decide on a location.

•

Remove the grass, roots, and stones where you will install the sensory path.

•

Level off the remaining soil, adding more topsoil or sand as needed.

Sensory path at Central Elementary School in La Grande, Oregon. Photo credit Finley Tevlin, SuzyMayes, and Carol Byron.

Size matters—determine how long and wide the path should be based on your child’s needs. Typically, it is about 3-4 feet wide, but it can be however long you want it to be.

Jennifer Straton

• •

Consider putting down a weed barrier (cloth).

•

Using string and stakes, grid off your path into 3-4 ft wide x 5-6 ft long sections.

•

Fill each section with a different material, such as mulch, smooth pebbles, tree cookies (thinly ‘sliced’ sections of tree trunks), grass, and coarse sand. These are just a few suggestions. Be creative!

•

Tamp down the materials so they are as level and even as possible, planning that you will need to do this many times to keep it level throughout its “life.”

•

Install handrails as needed, perhaps on one side of the path or both.

•

Invite your child to stroll up and down the path and observe whether their behavior changes after spending time on the path. Are they calmer and more focused?

Edge the path with bricks or another material that will hold the contents of the sensory path in place. Be very aware of how you lay the edging to avoid tripping hazards for your child.

Daniel Winterbottom

Here’s to nourishing our senses in nature!

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

50 | Exceptional Needs Today | Issue 18

🖥 workjournal.org/nurture-through-nature

SKILLS FOR LIFE

How to Develop Sharing When There Are Learning Differences

By Karen Kaplan, MS

S

haring is defined as dividing a portion of something with another or more than one other. Child development experts say children learn to share around three-and-a-half or four years old. Until then, we may hear them say, “Mine,” and they may grab their toy away from another, thinking they may take it, and it will be gone.

•

When everyone is playing with balls. Just help the child exchange one type of ball for another with someone.

•

When friends or students ride different tricycles, just have the child swap one tricycle for another.

•

Create games that are played with others. Maybe hide and seek. They hide and get found, and then they find a friend.

Children on the autism spectrum and those with similar learning differences may still be working on how to use a toy on their own and find it very hard to play with that toy with another, let alone share it. Their notion of sharing may take more time to develop. They may enjoy spending more time playing alone, to begin with. They may not understand why someone wants to play with them or share an item with them.

They may think the item is part of themselves and are anxious to lend it for a time to someone.

•

Choose simple games like ring toss or horseshoes, where one throws the item and then the other. Checkers could work, too. Candy Land used to be fun. I spin and move; you spin and move your marker.

•

Teach children to ask, “Can I play?” Teach them to ask if they can have a turn.

•

Maybe use a timer and set it so that you play with an item for a few minutes, and then when the timer goes off, they play, and the timer is re-set. Keep waiting short in the beginning.

•

If playing with a puzzle, give half the puzzle pieces to one child and the other half to your child.

• •

Card games can encourage sharing. Go Fish is a great one.

Suggestions for developing sharing First, be patient. When the child is done playing with something, encourage them to let someone else have a turn and praise them.

You can also try some of the following ideas: 52 | Exceptional Needs Today | Issue 18

Take some blocks and take turns building a tower higher and higher.

SKILLS FOR LIFE

•

Order a large pizza, cut it into pieces, and let the child see sharing a meal.

•

Create art projects and have the child share crayons, pencils, and paint.

•

Use musical instruments to teach turn-taking. “I model a drum beat, and you copy.”

•

Some children can learn why we share. Explain to them why sharing is a positive social skill. Use social behavior.

•

Perhaps someone needs a security object while waiting for their turn. Provide a preferred object for waiting.

•

Find some videos modeling taking turns/sharing. Have the child view them.

•

Everyone can be helped to give a little and get a little if we help them.

Use everyday activities to teach. For example: “I will use the toaster first, and then you can.” “I will pour my juice,

and then you can.” “Mom sits in the front seat going, and you can on our return.”

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

Exceptional Needs Today | Issue 18 | 53

EXCEPTIONAL EDUCATION

We Learned All The Wrong Lessons from the Pandemic

By Madeline Richer

D

isability justice advocates have been telling the world for a long time that people can do valuable work without showing up in person. During the early part of the pandemic, “If you’re sick, stay home” was used as a mantra to communicate that refraining from in-person social and professional activities is a form of self- and community- care. Take care of yourself and avoid harming others. Productivity can wait, and/or you can participate from home if you’re up for it.

For a moment in time, students who had ambiguous symptoms or had been exposed to a sick family member could play it safe and stay home from school without penalty. Students and teachers could go to school assuming that anyone they interacted with was feeling healthy.

the best attendance, especially on the week before Christmas break, when we know students are likely to want to start break a little early (but also when we know respiratory viruses tend to surge)! Don’t worry about that cough you have; it’s probably just “allergies” or a cold; push through! Students are showing up to school while sick, pushing their brains and bodies to work through physical and mental illness, despite having increased access to technology that should enable them to keep up with assignments online (see “downplaying digital literacy”).

Meanwhile, chronically absent students continue to be truant.

Truancy is not a new issue, and it won’t be solved by coercing students who already have decent attendance to attend school when they’re sick.

The return of attendance rewards

Personal tidbit: When the pandemic struck in 2020, like many educators, I completely shifted my approach to instruction virtually overnight. I became more flexible with deadlines, allowing students to turn in assignments in the evening even if they didn’t manage to log onto Zoom in the morning. I had one

As pandemic restrictions loosened and then disappeared entirely, schools brought back attendance incentives: Awards for 100% attendance! Pizza parties for homeroom classes with 54 | Exceptional Needs Today | Issue 18

EXCEPTIONAL EDUCATION student in particular who truly thrived with this new reality.

Before lockdown, she was on track to fail 9th grade at age 16 because she struggled to focus her attention on school.

Distracted by social dynamics that were exacerbated by the fact that she had a learning disability, she was constantly in the hallways or cutting school altogether. Once school was remote and attendance expectations were modified, this student was advocating for herself, turning in assignments at times that worked for her. This student deserves a pizza party just as much as a student with 100% perfect attendance. So does my student with insomnia and other disabilities that prevent him from getting to school regularly, but who regularly logs into Google Classroom and completes assignments with thoughtful, analytical writing.

Can we take a minute out of our learning-loss angst to congratulate students and teachers on the massive strides they made towards closing the digital literacy gap?

with lower socioeconomic status without access to laptops and iPads were less equipped to meet these expectations than their more affluent peers, because they were still mostly writing their essays by hand, or worse, completing mindless printed assignments on paper. When the pandemic hit in 2020, governments and school systems were forced to do what they should have done years earlier: provide all students with devices and laptops. Now, students are showing up to 9th grade knowing how to log into Google Classroom, edit a Google Doc, and type. Can we take a minute out of our learning-loss angst to congratulate students and teachers on the massive strides they made toward closing the digital literacy gap?

When students returned to in-person schooling, we had an opportunity to build on students’ increased confidence in navigating technology, but instead of embracing the “return to normalcy” hysteria that cut across all sectors of society, many educators chose to return to pen and paper. Technology was “too distracting” for students. Students “forgot how to socialize” because they spent “too much time on their screens.”

Nevermind the fact that millennials grew up socializing in chatrooms, or the fact that when used safely, social media provides ways for marginalized students, including neurodivergent and queer kids, to connect with others who share their minority identities or the fact that the adults are just as addicted to their phones, if not more so! We demand that students put down their screens even as we refuse to when we could be leaning into students’ tech-savviness as an asset they bring to the classroom.

Downplaying digital literacy Amid piles of articles bemoaning the “learning loss” students experienced during the pandemic, often argued to be “as a result of remote learning,” we’ve minimized the huge feat of students and teachers alike who managed to learn and instruct online. Before the pandemic, educators talked about the digital literacy gap, whereby students with lower socioeconomic status were underprepared for the digital demands of college.

Unlike high school teachers, college professors do not spend their time interpreting student handwriting. Proficiency in Microsoft Word, Pages, or Google Docs is assumed.

Communication via e-mail is the norm. A digital learning management system is expected to be used. But students

Maddie Richer (she/her) is a 9th grade special education teacher in New York City. In her 10 years as an educator, she has worked in public, charter, and private schools as a co-teacher, SETSS provider, learning specialist, and self-contained teacher. She currently works with neurodivergent young people in the Horizon program as a social studies and ELA teacher. Maddie is passionate about integrating social emotional learning, restorative practices, and social justice issues in the classroom.

Exceptional Needs Today | Issue 18 | 55

EXCEPTIONAL SPOTLIGHT Meet Dr. Morénike:

Advocating for the Next Generation

By Haiku Haughton

D

r. Morénike Giwa Onaiwu's journey toward discovering her passion for advocacy and education unfolded unexpectedly. She stumbled upon her interests by accident, finding herself naturally drawn to certain pursuits while others failed to hold her attention. "Things that interested me, I pursued, and things that didn't, I left behind," she reflects. This exploration led to valuable learning experiences, shaping her education beyond the confines of a formal school setting.

As a middle child, she felt compelled to intervene and “do good” from a young age. "I found myself at a young age trying to help and be good," she recalls. Despite her parents' frustrations with her tendency to defend her brothers, she viewed it as taking one for the team, a formative aspect of her upbringing. Through diverse life experiences, she learned invaluable lessons and felt a growing responsibility to use her voice for advocacy. "Living life and having different experiences is how I learned," she notes, expressing her desire to make a meaningful impact by speaking out and addressing important issues.

Embracing identity and leading by example As a non-binary individual and a parent within a neurodiverse family, Dr. Morénike proudly embraces her identity and offers invaluable insights to younger generations, hoping they can glean wisdom from her experiences. Reflecting on the authenticity and curiosity she sees in today's youth, she emphasizes the importance of exploration and self-discovery.

"One thing that I want people to learn," she asserts, "is there is no one way to express yourself or be yourself." She admires the genuine curiosity and refusal to simply accept the status quo exhibited by many young people today. Encouraging authenticity, she advises, "Just try to be your authentic self."

When faced with uncertainty or mistakes, Dr. Morénike leads 56 | Exceptional Needs Today | Issue 18

EXCEPTIONAL ADVOCATE by example, acknowledging her limitations and admitting fault when necessary. "If my kids ask me something and I don't know the answer, I'll say, 'I don't know,'" she affirms.

Transparency and honesty serve as guiding principles in her life as she strives to set a positive example and encourage others to embrace their true selves.

Navigating multiple disabilities, including autism, ADHD, and autoimmune conditions, Dr. Morénike confronts challenges with resilience and determination. When invited to a disability empowerment summit, she faced a dilemma: the event required in-person attendance, posing potential health risks at the time. Despite acknowledging the value of physical presence, she prioritized her well-being, recognizing the need for inclusivity. "I understand the importance of in-person connections," she reflected, "but I must prioritize my health."

Advocating for accessibility, she proposed an online option, prompting the summit organizers to reconsider their approach.

This experience reinforced Dr. Morénike's commitment to selfadvocacy and empowerment. "This is my life," she asserts, "and I must advocate for myself." Her journey serves as a reminder to embrace individuality and strengths, regardless of disability or circumstance. "Everyone is different," she emphasizes, "and it's okay to recognize your strengths and weaknesses."

Finding empowerment in authenticity, she encourages others to embrace their uniqueness and refrain from dimming their light to fit societal expectations. "What makes you, you?" she poses.

"Lean into that and shine brightly."

In the vast landscape of the disability community, Dr. Morénike has encountered numerous allies who stood by her side.

However, she observed a common sentiment among them: the desire to support the community without overshadowing it.

"Allies are amazing," she acknowledges, "but they're meant to stand beside us, not lead the charge." Recognizing the feeling of inadequacy among advocates, she urges individuals to embrace their inner advocate without setting unattainable standards. "Your advocacy starts from within," she emphasizes.

Find your own path Her advice to young people echoes this sentiment of selfdiscovery and authenticity. Rather than conforming to preconceived notions of advocacy, she encourages them to find their own path. "Find what your thing is," she urges, "Advocate for it in your own way." Whether it's on a grand stage or through subtle actions, she emphasizes the importance of staying true to oneself. "Don't try to be an advocate like anyone else," she advises. "Just be yourself."

In a world brimming with possibilities, Dr. Morénike advocates for keeping young people's options open. "Explore what you can potentially do," she suggests, "and embrace who you could potentially be." By fostering a culture of individuality

and exploration, she believes young advocates can make meaningful contributions to their communities while staying true to themselves.

Dr. Morénike emphasizes the importance of promoting representation and justice for young individuals through various avenues. She highlights the significance of dispelling stereotypes and myths as a crucial first step. Advocating for meaningful community involvement is essential, she suggests, urging people to listen to the voices of others and design initiatives that cater to diverse needs. Rather than traditional methods like PowerPoint presentations, Dr. Morénike suggests exploring innovative approaches such as creating TikTok videos to engage a wider audience. She underscores the importance of starting with the community, actively seeking their input, and adapting strategies accordingly.

Reflecting on the evolution of her organization's name, she explains, "Our name was Autistic Women & Nonbinary Network because, initially, it was Autistic Women Network. Despite preaching gender inclusivity, many in the community felt their voices were not being heard." A desire for greater inclusivity drove Dr. Morénike's decision to change the name. Additionally, she advocates for empowering individuals to take on leadership roles and encourages them to share their stories to connect with others and advocate effectively. She stresses the importance of providing avenues for people to engage with legislators, making their voices heard on behalf of the community.

For young individuals navigating diverse backgrounds and embracing their identity, Dr. Morénike offers insightful advice.

She emphasizes the importance of cultivating patience, acknowledging that while some may be well-intentioned, others may lack understanding of one's unique experiences.

"There will be a lot of annoying people," she acknowledges, "but sometimes you have to give them grace." Drawing from personal experiences and cultural knowledge is key to understanding oneself and the world, she suggests, urging individuals not to hesitate in tapping into their life experiences and backgrounds. Additionally, she recommends seeking out individuals whose lives mirror one's own, fostering connections and shared understanding. This journey of self-discovery and identity navigation, Dr. Morénike believes, is enriched by patience, self-awareness, and a supportive community.

Amplifying voices Dr. Morénike shares valuable insights for young individuals with disabilities seeking to amplify their voices and advocate for change on public platforms. She underscores the importance of starting with the media, particularly if comfortable with social platforms, as an effective way to initiate action.

"Explore websites to stay informed about community events and opportunities to contribute through public testimony or commentary," she advises. Platforms like Instagram, TikTok, Exceptional Needs Today | Issue 18 | 57

EXCEPTIONAL ADVOCATE and YouTube offer accessible avenues for sharing stories and opinions, while participation in panels provides another platform for advocacy.

Dr. Morénike encourages creativity, suggesting using writing platforms and other mediums to express oneself effectively.

Additionally, she stresses the significance of maintaining a professional online presence through platforms like Gmail and LinkedIn, emphasizing the importance of actively checking emails and messages. By leveraging both traditional and digital means, young advocates can maximize their impact and effectively engage with opportunities for change.

To tie everything up, Dr. Morénike emphasizes that young people hold the power to foster inclusive and supportive environments for individuals with diverse disabilities.

"Sometimes, all it takes is speaking up, asserting one's presence, and simply being there," she affirms. Leading by

example through the mere act of living one's life authentically also serves as a powerful means of expressing needs and advocating for change. By actively participating in their communities and embracing their identities, young individuals can contribute to a more inclusive society where everyone's voice is heard and valued.

Sometimes, all it takes is speaking up, asserting one's presence, and simply being there.

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.

58 | Exceptional Needs Today | Issue 18

Autism-Friendly Family Travel: Tips for a Stress-Free Journey

By Brianna Hillison, BCBA

60 | Exceptional Needs Today | Issue 18

TRAVEL AND RECREATION

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amily trips can be fun and exciting but can also disrupt your child’s routine. For children on the autism spectrum, the disruption of a long journey and new environment can be overwhelming. As a parent, you're bound to face numerous challenges throughout the journey, including sensory overload, communication difficulties, and unexpected changes in plans.

However, with careful planning and consideration, you can create a smooth and enjoyable experience for the whole family.

To get you started, we’ve put together this list of travel tips based on concepts from applied behavior analysis (ABA), aimed at making your upcoming journey as stress-free as possible. We hope this guide will give you the confidence to get out of the house and experience a wonderful family trip for everyone.

Plan ahead A little planning can go a long way, and this is especially true when you’re traveling with a child on the autism spectrum.

Start by putting together a daily schedule for your trip.

This schedule should include important details such as transportation arrangements, mealtimes, rest breaks, and planned activities. Having a clear itinerary can help your child anticipate what will happen next, which can reduce anxiety and provide a sense of structure and predictability throughout the journey.

Consistency and structure can go a long way in easing any anxiety or stress your child may experience while on the road.

Next, pack a few days in advance to avoid any last-minute rush or stress. Make a checklist of essential items such as medication, comfort items, and any special dietary needs.

Also, plan to bring along any sensory tools that your child might need, including noise-canceling headphones, weighted blankets or vests, fidget toys, sunglasses or hats, and visual schedules or cards to aid in managing sensory sensitivities and enhancing comfort during travel. Additionally, involve your child in the packing process if possible, as this can help them feel more prepared and engaged in the upcoming adventure.

Prepare your child mentally Even with a highly structured schedule for each day of your family trip, your child will likely still need mental preparation

for what’s ahead. In the weeks leading up to departure day, continually go over all the things they will encounter. Show them photos of the places and people you’ll visit, tell stories about what each day will be like, and count down the days on a calendar together. This preparation will give your child time to familiarize themselves with the trip and minimize surprises.

If you have time, you can create a travel itinerary book that includes photos of your destination and your daily schedule.

Let them hold onto this book and add to it as you make your way through your itinerary. It will give them a sense of reassurance and control when things start to get a bit stressful.

Keep your child safe and calm Autistic children can be prone to unpredictable behavior, such as running away. So, it's crucial to implement safety measures so you can quickly find them if they become separated. Equip them with an ID tag bearing your name and phone number securely attached to their clothing or belongings. If the child has a cell phone, ensure the GPS is activated. Dress them in clothing with bright colors or distinctive patterns to make them easily recognizable. Inform airport and hotel staff beforehand about your child's special needs to ensure assistance in the event of separation.

In addition to ensuring their safety, you also want to keep your child calm when things start to get a bit stressful. Try offering them incentives as a reward for completing each leg of the journey. For example, "Once we get on the plane, you can play with your coloring book." "When we get to Grandpa's house, you can have your favorite mac n' cheese." This can be a great way to encourage positive behavior and provide your child with something to look forward to.

Stick to the routine Routines play a crucial role in providing stability and comfort for children on the autism spectrum. When traveling, mimicking the structure of their daily routine (such as adhering to usual mealtimes, sleep schedules, and allotted screen time) can significantly help make your child feel more secure and less anxious. Moreover, integrating familiar routines into new or different activities during the trip can help them manage their emotions and behavior more effectively. This approach assists in keeping your child calm and content, making the travel experience smoother and more enjoyable for the entire family.

If adjustments are necessary, introduce the changes gradually and communicate them to your child in advance. Consistency and structure can go a long way in easing any anxiety or stress your child may experience while on the road. If your child starts to become agitated at a change in routine, it's essential to stay calm, as your demeanor can significantly influence your child's response to the situation.

Exceptional Needs Today | Issue 18 | 61

TRAVEL AND RECREATION Remember to validate their feelings and offer support as they navigate the adjustment.

yourself, you'll be better equipped to support your child and make the journey as smooth as possible for both of you.

Take breaks

Final thoughts

Throughout your journey, ensure your child takes regular breaks for physical and cognitive rejuvenation. This can take the form of high or low sensory activity, depending on their needs and preferences. For example, before long trips, allow them to play in open spaces like playgrounds to release any pent-up energy. Make regular rest stops where they can stretch their legs and receive new sensory input. If you need to lower the stimulation level, find quiet areas of the airport or provide them with headphones that play calming music.

Embarking on a family trip with a child on the autism spectrum can present many challenges, but with careful planning and consideration, it can also be an incredibly rewarding experience for everyone involved. Plan ahead and approach everything with a positive attitude. Most of all, though, enjoy your family time together.

Also, don't forget to take breaks for yourself. Know the signs of when you're starting to feel overwhelmed and in need of selfcare. Whether finding a quiet corner to decompress, grabbing a snack, practicing deep breathing exercises, or taking a short walk, listen to your body and mind. Remember, by caring for

Brianna Hillison, BCBA, is a proud alumna of the University of Nevada, Reno, and currently serves as a Board Certified Behavior Analyst (BCBA) at Circle Care Services, with five years of experience in the ABA field. 🌐 circlecareservices.com LINKEDIN linkedin.com/in/brianna-hillison-611754187/

62 | Exceptional Needs Today | Issue 18

FINDING ACCOMMODATIONS

SHAPING OUR FUTURE Recital Ready! Helping Children Conquer Anxiety Before Musical Performances

By Rose Adams, OTD, OTR/L

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or children who are interested in music and choose musical activities as an extracurricular activity, participating in a recital or performance can be something that comes with mixed feelings and emotions. Like adults, children may experience stage fright or music performance anxiety (MPA) (Keen et al., 2019). This is characterized by thoughts, feelings, or behaviors associated with their performance (Adams, 2023; Nanako et al., 2023).

to recitals, David decided to pass on the live recital since the academy offered the option of a virtual recital performance. We left it up to him to decide. Joseph was comfortable proceeding with the live recital, but only if I sang with him. Joseph had been practicing “Say Something” by A Great Big World and Christina Aguilera. David had been practicing “Believer” by Imagine Dragons. The boys selected their own songs as the music academy encouraged them to do so.

Earlier this year, my husband and I received a postcard in the mail from a local music academy. I asked our twin boys, David and Joseph, if they would like to sign up for music. Although I consider myself musically inclined, I didn’t notice much interest from our boys. To my surprise, they both said “Yes” but chose different instruments. Even identical twins have their own musical preferences, but I digress. We signed David up for drums and opted for piano for Joseph. We were so excited that they showed great interest and looked forward to going to music on “Mommy Pick-up Days.” In my article, “I’m not ready,” published in issue 16 of Exceptional Needs Today, I discuss incorporating activities that support your child’s strengths and interests into new routines (Adams, 2024). David had difficulty adjusting to a new change in routine with pick-up days from school, so music was added to the routine to support this transition.

Recital-ready

Now, back to the story. A few months into music lessons, the academy shared they have spring and winter recitals and that our boys are welcome to participate if they like. I love that they provided them with the choice! Choices help to give kids a voice (Adams, 2022). Both of our boys seemed interested but still weren’t sure. As we approached the weeks and days closer 64 | Exceptional Needs Today | Issue 18

Days before the recital, the boys had practiced their pieces and felt good about them. David decided to do the live performance after all but felt a little nervous. We encouraged and coached them. We shared that we would be right there with them. We told both boys we believed in them and knew they could do it. Performing can bring up many feelings. Feeling nervous or anxious is probably one of the big ones.

On recital day, our boys seemed ready to go, but Joseph suddenly became quiet. I noticed this was not like him. He also seemed more frustrated with us and his brother. I felt he was starting to feel anxious. I shared that I also felt a little nervous since I would be performing with him. As a singer, I’ve learned to manage my nerves and emotions and have created strategies to support me. I jotted down the words to the only verse I was singing and took it with me.

When we arrived at the venue, Joseph seemed more uncomfortable. We arrived early because students had the opportunity to explore the space and test out the instruments

ANXIETY MANAGEMENT self-regulate while performing. Joseph and I were now seventh to go on the program. This gave us both extra time to get settled. When it was our turn, Joseph took his place at the piano, and I was given a microphone. He played so beautifully and did so well. You can find his video performance on my YouTube channel here (Rose Adams, 2024).

I share this story to show that we all may experience performance anxiety whenever we have an opportunity to perform in front of others. Whether it’s music, theater, dance, spoken performances, or other forms of expressive art, children with disabilities might need a little extra support with managing feelings, thoughts, and behaviors that come with these experiences. I would like to offer a few suggestions to support young children in managing their anxiety before musical performances:

1. Ask questions We may recognize some physical signs of performance anxiety, such as a noticeable change in breathing (heart rate), sweating, or pacing (Nanako et al., 2023). However, there may also be mental or other body signs we may not be fully aware of. Asking questions is one way to offer support. For example, “I can see you may be feeling a little nervous about today’s performance; what can I do to support you?” Be sure to tailor your questions to the individual needs and level of understanding of the child.

2. Provide coaching

before the set started. David went on and sampled his drums.

Joseph went up and barely touched the piano. He glanced at the recital program and noticed he was the first to perform for the set. At this point, his breathing rate changed from steady to rapid. We offered him water and to take a walk. We also spoke with the director and asked if Joseph could be moved down on the program while we support him through his nerves. The director agreed and offered a practice room outside where he was scheduled to perform. This was perfect, so I thought.

Joseph agreed to use the practice room but still felt uneasy until his instructor arrived.

Joseph had a good relationship with his piano instructor.

Relationships are important! Her approach was calm, supportive, and encouraging. He needed a little extra coaching from her before his performance. After his practice session, he seemed to feel better as his breathing rate was more normalized. He watched his brother’s performance and quietly cheered others on. David appeared comfortable but later shared he was “freaking out” on the inside. We gave him a stick of gum before the performance, and he used that to somewhat

In my example, we provided positive words of encouragement, let Joseph (and David) know that we were there for them, and allowed them to share what they needed. Other examples of coaching might include providing motivational pep talks or teaching positive selftalk. How else can you support a child through coaching before a musical performance?

3. Offer support Support can occur in many ways. We supported Joseph through program accommodation, a walk, and a quiet practice room. We supported David by offering gum for self-regulation and giving him the option of performing (virtually or in person).

4. Share experiences During recital season, I shared with both of our boys the many times I have felt nervous before singing or speaking in public. I shared that, although I prepare, I still get nervous.

I answered their questions about things I’ve done to help me and what I’ve done when I mess up. Some of my examples were writing lyrics on paper, telling jokes before I speak, or being honest with my audience about how I’m feeling. In some instances, I’ve even made up my own lyrics Exceptional Needs Today | Issue 18 | 65

ANXIETY MANAGEMENT when I forgot the words to songs (which they thought was funny). But most importantly, we shared that, no matter the outcome, they would get through it, and we would be proud. Can you think of a personal experience where you’ve felt anxious before a performance? How did you get through it? How can you use this experience to support a child in managing their anxiety before a musical performance?

5. Celebrate the wins The final suggestion is to celebrate! Celebrate their wins, especially the small ones. How we respond to the strength and brave effort that children put forth when preparing for a performance may give them the confidence to do it again!

After the recital, out of curiosity, we asked our boys how they felt about their performances. They both said: “Good, but…” They began to dissect the parts where they felt that they messed up. We assured them that, chances are, no one noticed, and even if they did, we still celebrate them for being brave and for how well they did. They are both now looking forward to the winter recital. Don’t forget to celebrate every win, starting with the thought of performing, to the decision, the practice, the performance, and, if needed, celebrate the decision to withdraw. It’s all a win!

Musical performances can be exciting yet anxiety-provoking.

Consider the above strategies when supporting young children with exceptional needs to overcome anxiety before musical performances.

References Adams, R. (2024, April). I’m not ready: Supporting differently-abled kids through changes in routine. Exceptional Needs Today, 16, 18-20. http:// www.exceptionalneedstoday.com/ Adams, R. (2023, January). Behind the shield: Helping children manage emotions during stressful life events. Exceptional Needs Today, 11, 33-36. https://issuu.com/exceptionalneedstoday/docs/ent_issue_11_final Adams, R. (2022, July). Giving kids a voice: Promoting early self-advocacy among children with disabilities. Exceptional Needs Today, 9, 18-21. http:// www.exceptionalneedstoday.com/ Keen, D., Adams, D., Simpson, K., den Houting, J., & Roberts, J. (2019).

Anxiety-related symptomatology in young children on the autism spectrum. Autism, 23(2), 350-358. https://www.researchgate.net/ publication/321539825_Anxiety-related_symptomatology_in_young_ children_on_the_autism_spectrum Nanako, I., N., Yuki, M., Michiko, Y. (2023). Symptoms of and coping strategies for music performance anxiety through different time periods.

Frontiers in Psychology, 14. https://doi.org/10.3389/fpsyg.2023.1138922 Rose Adams. (2024, June 30). Say something by A Great Big World and Christina Aguilera: Cover by Joseph A., Recital [Video]. YouTube. https:// youtu.be/vEXU-EY5-pI?si=pTzf9qDRX5eI6WQk

Resources Fishkill Music Academy (Hudson Valley, NY)

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. 🌐 changinglivesot.com LINKEDIN linkedin.com/in/rose-adams-otd-otr-l-5068b316 INSTAGRAM @changinglives_ot

66 | Exceptional Needs Today | Issue 18

EXCEPTIONAL EDUCATION

Supporting A Hard-of-Hearing Child at School

By Dr. Ronald I. Malcolm, EdD

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very year, hundreds of children enter the public school system with varying degrees of deafness. Many who are classified as hard-of-healing become known as invisible students with disabilities in school. Here are 10 tips to consider when advocating for a hard-of-hearing child.

1. Explaining a child’s hearing loss Be prepared to be able to explain the child’s hearing loss and how it impacts their day at school. Many children who are hard-of-healing have speech ability and often present wearing hearing aids. Many people in their educational environment assume that since they can talk and have a hearing aid, there is “no problem.” Bring a copy of the child’s audiogram to school meetings and explain what sounds they may struggle to hear. If the child is slowly losing their hearing, ensure that professionals at the school comprehend that the child is at high risk of becoming Deaf.

Some hard-of-hearing children will need specific services to prepare them for a future where they may no longer be able to rely upon their residual hearing ability.

Many children and young adults do not like being called hearing impaired. If referring to the child’s hearing loss is necessary, most children prefer the term hard-of-hearing.

68 | Exceptional Needs Today | Issue 18

2. Utilizing amplification devices in the classroom Some hard-of-hearing children wear hearing aids and benefit from them. Others get embarrassed about wearing hearing aids and attempt to hide them under their hair or by wearing a hat. Then, some will refuse to wear any type of amplification device, such as a hearing aid. If the child does wear a hearing aid, you’ll need to explain to the staff at the school that they may need to store extra batteries on the teacher’s desk or the nurse’s office. Older students generally take care of their hearing aids and supplies themselves.

Teachers may wonder why some children remove their hearing aids at various times throughout the school day.

Many children entering the gym or cafeteria will either turn their hearing aids off or physically take them out. This is because they find the volume of the noise overwhelming and may complain of getting a headache. Many children take their hearing aids off in PE due to the fear of them getting damaged or broken during a sports-related activity.

Nowadays, many teachers wear amplification devices in the classroom to conserve the strain on their voices as they

EXCEPTIONAL EDUCATION instruct. Children who are hard of hearing can benefit from educators who wear such devices.

3. Learning about communication options Many hard-of-hearing children will present with varying degrees of speech ability. Each child is different, and the school should never assume all children have speech ability. Many children use American Sign Language as their preferred mode of communication.

Numerous hard-of-hearing young children attend SpeechLanguage Therapy sessions as part of their school day.

While attending a speech session, they miss time in the classroom. As they miss certain parts of a class each week to attend speech therapy, they may need extra assistance to stay current on their studies.

4. Involving professionals in the educational process Everyone in the school setting must be actively involved in the educational process. This includes regular education teachers, teachers of the Deaf, elective teachers, speech therapists, school nurses, school administrators, paraprofessionals, and sign language interpreters. Having them, as well as the child, attend the annual Individual Educational Plan (IEP) meeting will ensure everyone hears the same information at the same time. It will also begin to foster a sense of self-advocacy for children to understand how to find their own “voice” in their educational program.

If their hearing ability has changed or they have lost more of their hearing, this may need to be explained as well.

5. Using preferential seating Most children who are hard-of-hearing will require preferential seating. Sitting up front in each class will allow them to hear the teacher better, watch a sign language interpreter, or lipread the teacher. Many children do not have the same degree of hearing loss in both ears. One of their ears may have better hearing ability. Their seating arrangement in the classroom should allow them to have the ear with the better hearing pointed in the direction of the instructor.

6. Understanding the limits of lipreading You must advocate that not all people are experts at lipreading. Many individuals assume lipreading is a “natural” skill that all hard-of-hearing and Deaf people possess. Children can develop lipreading techniques through their interactions with their teachers of the Deaf.

Teachers must understand how difficult and exhausting it is for a hard-of-hearing child to lipread throughout their school day. If you are a teacher and notice a hard-

of-hearing child is arriving home excessively tired or with a headache from school, it may be time to have another meeting at school.

7. Using captions for classroom movies Seeing a movie or video at school is often a favorite activity for children. Hard-of-hearing children can enjoy this activity as well. Showing a movie to the class that is not captioned should never occur when a hard-of-hearing child is present. It is unacceptable for an educator to pass the child a written script of the movie instead of providing captioning and expect them to read the script and enjoy the movie at the same time.

8. Supporting socialization It is important for children to socialize during their school day. Many hard-of-hearing children report not feeling accepted by their hearing peers. They often will cite that they don’t feel included within the Deaf Community as well.

They often state they feel “stuck” between the hearing and the Deaf Communities. Involving the school counselor can help with this situation. They can work with your hardof-hearing children to develop their level of self-esteem and self-advocacy skills. School counselors or teachers of the D can provide classroom presentations dealing with appropriate ways to interact with a person with a hearing loss to help them be involved in a social situation. Hearing students may wonder why a child never seems to join the conversations during lunch in the cafeteria. The child may be experiencing great difficulty in understanding someone through lipreading if they are chewing gum or eating their lunch and talking simultaneously.

Older hearing students may also wonder why their hard-of-hearing classmates never seem to communicate when driving to school with them in the morning or when attending a school dance. The radio blaring in the car in the morning may be causing the hard-ofhearing student to hear nothing but garbled noise. It is also difficult to lipread a driver facing forward as they drive when the student only has access to the corner of their mouth for lipreading purposes. Finally, walking into a dark gymnasium for a school dance can pose many communication issues for students with hearing losses that depend upon seeing your face and mouth to comprehend a conversation accurately.

9. Misunderstanding “the nod” Many hearing people use incorrect terminology when attempting to determine if a hard-of-hearing child has “heard” them. A teacher will generally ask the child, “Did you hear me?” The child, not wanting to be embarrassed, may simply “nod.” It is often called the “Infamous Exceptional Needs Today | Issue 18 | 69

EXCEPTIONAL EDUCATION Nod” that hard-of-hearing and Deaf people use when attempting to communicate with hearing people. The better question would be, “Did you understand what I said.” Many Deaf and hard-of-hearing people can hear you say something. However, many hard-of-hearing children are listening “electrically” through their hearing aids and not “acoustically.” Simply having a child “nod” does not mean they understood what you said.

10. Becoming an expert on accommodations and supports As a hard-of-hearing child navigates school daily, their caregivers will likely become experts on the accommodations and supports they require. Later, as the child matures, they might begin to self-advocate for their own needs. Until they have the skills, that responsibility will fall to their parents.

A child may require notetaking services at school.

Lipreading a lecture or lesson and taking notes simultaneously is almost impossible. Getting copies of the notes from the teacher or another student is extremely helpful. Another issue that is a constant nuisance for children who are hard-of-hearing is daily PA announcements. It is difficult for hard-of-hearing individuals to comprehend what is being said. They may need a copy of the daily written script for announcements to be aware of events happening within the school.

Finally, hard-of-hearing children are prone to reoccurring otitis media, often referred to as ROM. These are constant or reoccurring ear infections that make wearing earmolds from their hearing aids impossible. So, even hard-of-hearing children who benefit from hearing aid usage may have to go without them for a week or so while taking an antibiotic to clear up the ear infection. During those times, they will require additional assistance daily at school to stay current on their studies.

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

70 | Exceptional Needs Today | Issue 18

EXCEPTIONAL ADVOCATE

Unlocking My Child’s Voice through Augmentative and Alternative Communication

By Dr. Kimberly Idoko, MD, MBA Esq.

72 | Exceptional Needs Today | Issue 18

COMMUNICATION STRATEGIES

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hen my daughter Lexi received her first speech-generating device at school following an Augmentative and Alternative Communication (AAC) evaluation at age three, it was like watching a flower bloom in fast forward.

There she was, a bright-eyed little girl locked in by Rett syndrome, with so much to say but without the words to say it, suddenly given the key to unlock her voice. The transformation was nothing short of magical. It was a poignant moment that underscored a fundamental truth: Every child with limited communication skills deserves early access to AAC. Lexi’s journey with her speech-generating device has been a testament to the power of high-tech AAC. It's not just about facilitating communication; it's also about opening doors to education, social interaction, and a richer, more independent life. And yet, despite its clear and research-backed benefits, there remains a stubbornly pervasive myth that AAC might hinder or delay a child’s speech development, as well as menacing funding hurdles and professional knowledge gaps that limit its broader implementation.

What is AAC? Imagine, if you will, the world from the perspective of a child for whom verbal communication does not come easily. Every attempt to express a thought, a need, or a feeling is met with a barrier as tangible as a wall of glass. Now, picture the introduction of AAC as the hammer that shatters that barrier, allowing the child to finally reach out and touch the world.

But first, let’s clarify what AAC is. AAC encompasses a wide range of tools, strategies, and technologies designed to support or replace traditional speech. These can include everything from picture boards to sophisticated electronic devices that generate speech. In all of its many forms, AAC empowers children with communication disorders to express their needs, thoughts, and emotions, fostering a sense of independence and participation in educational and social interactions.

Let's set the record straight, shall we?

The science behind AAC A 2018 systematic review by Alexandra F G Patchet al., entitled "Examining the Effects of AAC Intervention on Oral Language in Children with Autism Spectrum Disorders,” is illuminating.

This review delves into the efficacy of AAC in enhancing verbal communication among children with ASD. The conclusion?

AAC use does NOT decrease verbal language. In fact, AAC intervention likely increases verbal language output.

Furthermore, a 2014 review by Maria Antonella Costantino and Maurizio Bonati published in PLOS ONE casts a wider net, exploring AAC interventions to supplement spoken communication for children with limited speech.

This comprehensive examination of the field highlights

the growing body of research and interest in AAC. The overarching message is clear: AAC interventions not only improve communication skills but also significantly enhance the quality of life for communication-impaired children and their families.

Introducing AAC early is pivotal for children with communication challenges. Research by Beth E. Davidoff (2017) emphasizes that children as young as 12 months can greatly benefit from AAC, significantly enhancing their ability to communicate. Further, Diane C. Millar et al. (2006) review the profound impact of AAC intervention on speech production, suggesting that early exposure to AAC improves expressive language for most users. Hannah Waddington (2018) supports these findings with a meta-analysis highlighting the effectiveness of high-tech speech-generating devices for teaching communication skills to children with autism spectrum disorders.

Together, these studies underscore the critical role that early AAC introduction plays in fostering children’s better communication outcomes. They affirm that AAC is a vital tool in the arsenal for supporting language development— emphatically not a crutch but a launchpad.

Hurdles to AAC adoption Despite the clear benefits and transformative impact of early AAC intervention, its widespread adoption faces several hurdles that delay or limit access to AAC for children who could greatly benefit.

Societal misperceptions Societal misperceptions surrounding AAC are stubborn and pervasive. Despite ample evidence to the contrary, there’s a persistent misconception that AAC might hinder or replace natural speech development. This misconception often influences the decisions of caregivers, educators, and even professionals, leading to hesitancy in pursuing AAC evaluations early. Furthermore, a broader societal stigma is associated with using assistive technologies, which discourages many families from seeking AAC solutions.

Systemic barriers One of the primary obstacles lies within the healthcare and educational systems themselves. Limited resources, including funding and availability of specialized professionals trained in AAC, can restrict access to AAC evaluations. Insurance coverage for high-tech AAC devices and services varies significantly, often leaving families facing prohibitive costs. Additionally, education systems often lack the infrastructure (or the will) to support widespread AAC evaluations and followup implementation within classrooms despite the implied and desperate needs so often highlighted in Individualized Education Programs.

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COMMUNICATION STRATEGIES Professional knowledge and training There’s also an undeniable knowledge gap among professionals who work with children with communication difficulties. Despite the growing body of research supporting AAC, not all speechlanguage pathologists or educators are versed in AAC options.

This gap stems from a lack of specialized training or continued professional development opportunities focused on AAC. Consequently, professionals who are not aware of or confident in AAC’s benefits might be hesitant to recommend evaluations, favoring more “traditional” approaches.

unique perspectives with the world. So, to any parent whose child has limited communication skills, remember introducing AAC early can open a world of possibilities. It’s about creating a space where your child can find their voice and, with it, a path to a more connected life.

AAC isn't just about giving children a voice; it's about giving them the opportunity to write their own stories and share their unique perspectives with the world.

The path forward Addressing these challenges requires a multifaceted approach.

Advocacy and awareness campaigns (i.e., stories like this one!) can help shift societal misperceptions about AAC. Professional development and training programs can equip more speechlanguage pathologists and educators with the knowledge and skills to conduct AAC evaluations and support AAC users. On a systemic level, policy changes and increased funding are necessary to ensure that AAC evaluations and interventions are accessible to all children who might benefit from them.

Watching Lexi navigate her world with the help of her speechgenerating device has been a journey of discovery, not just for her but for me. It has underscored a deep and fundamental truth: every child deserves the chance to express themselves as fully and freely as possible.

AAC isn't just about giving children a voice; it's about giving them the opportunity to write their own stories and share their

Kimberly Idoko, MD, MBA, Esq. is Yale College, Penn Medicine, Columbia Business, and Stanford Law trained. She operates SpecialParentCoach.com, a parent-advocacy empowerment community for parents of disabled children. In addition, she is a tele-neurologist with more than 15 years of clinical experience and a children’s rights attorney who directs healthcare advocacy at a legal non-profit. She resides in Los Angeles with her family. 🌐 specialparentcoach.com

74 | Exceptional Needs Today | Issue 18

EXCEPTIONAL ADVOCATE MY WORD

REFLECTIONS

THERAPIES AND TREATMENTS

MY WORD

REFLECTIONS Come Touch His Cheek©

By Gary Shulman, MS, Ed

This child of mine you stare at so, Please come closer so you will know Just who my child is and what I see when those sweet eyes stare back at me I see no limits to my child’s life Although I know It will be filled with strife, I’m hoping that doors will open each day I’m praying that kindness will come his way You look frightened?

You tremble with fear?

Come, come closer touch him my dear Touch his cheek so soft so sweet Be one of those people he needs to meet Someone who will look and hopefully see The skill, the talent The ability Please come closer You don’t have to speak Come a little closer Just touch his cheek And when you do you will see He is no different than you or me

Gary Shulman, MS, Ed has spent a lifetime supporting vulnerable families and children. He began his career working with children with and without disabilities in an inclusive Head Start program in Brooklyn, NY. He then transitioned to becoming the Special Needs and Early Childhood Coordinator for the Brooklyn Children's Museum for 10 years. His passion for advocacy grew as he worked more and more with parents of children with disabilities. For over 24 years, he has advocated for the needs of these parents as the Social Services and Training Director for Resources for Children with Special Needs, Inc. in NYC. During the last years of his working life, Mr. Shulman served as a private Special Needs Consultant, conducting hundreds of training sessions throughout NYC and beyond to help parents and professionals find and access the services and systems required to facilitate maximizing the potential of their children with disabilities. Now retired in Arlington, VA, but still supporting vulnerable families, serving as an Advisory Commissioner for the Arlington Partnership for Children, Youth and Families. Gary continues his workshop presentations virtually and now also enjoys sharing the poetry that he passionately writes with the goal of leaving this world a better place one word at a time.

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THERAPIES AND TREATMENTS

Vista Del Mar Helps People on the Spectrum Navigate Through Self-Acceptance

By Kate Foley

V

ista Del Mar, a 116-year-old charitable institution known for its long history of helping the marginalized feel as though there is a place where they belong in this world and for providing that safe space to heal, has recently opened its own Autism Clinic.

At the forefront of Vista Del Mar’s new venture is Dr. Joshua Durban. Dr. Durban brings to the Autism Community a renewed approach to helping those in a world not built for them to create space for themselves and connect more with those that truly matter. In a society that often does not have a great enough understanding of those on the spectrum, miscommunication can lead to dangerous situations. Dr. Durban aims to help people on the spectrum navigate by accepting themselves.

Dr. Durban spoke with me about the new venture and addressed some hot autism discussion points.

Vista Del Mar has a long history of supporting marginalized individuals and developing creative ideas. What led you to Vista Del Mar and its Autism Center?

It’s been quite a journey because I was originally invited to move here to establish a polyclinic, a community center that 78 | Exceptional Needs Today | Issue 18

would provide psychoanalytic treatment for kids under the Psychoanalytic Center of California, the PCC. At one point, I was invited to give a seminar at a center that was part of Vista.

I started getting to know the organization, its very rich history, and its philosophy of providing restorative services for all populations. So, they seemed to be the perfect place for me.

I've been doing this in Israel and Europe for over 40 years.

We usually are able to diagnose kids on the spectrum in Israel from six months… because we use a different mode of assessment… We mainly look at the child's emotional state, internal experience, and the way the child experiences the world according to their own very special constitution. They're not built like other kids neurologically.

I think some people hearing psychoanalysis might be reminded of the old “refrigerator mother” trauma that “caused” autism, and so I want to reassure readers that this is not what is happening here. Can you elaborate?

Not at all. Look, psychoanalysis is moving along. Looking at what was good 70,80 or 100 years ago, it would be mad to think it applies to what we know today with all the new input and research from neurology and biology. You know… it is about all

THERAPIES AND TREATMENTS the gifts that children can manifest when they're understood and met in the right way, and this has been our experience in Israel.

Many people on the spectrum can really have a good life, integrating into society their way. Some of our older kids, the ones with whom we've been working for years, they work for Google, they work for IBM, they have jobs, they have partners.

But I think the main difference here (in the United States) is it's really tough on parents… it’s not just the commitment… it's the cost. So, another thing we really are very conscious of is how to make [participation] possible for many, many families.

So, at the VAC [Vista Del Mar], we have stipends for kids who can't afford it. We have a sliding scale to enable kids who can't pay to participate.

That’s wonderful! You talked a bit about your method and about this psychoanalytical approach and how it differs from other treatments. In your experience, what are some of the factors you often see contributing to higher occurrences of PTSD in the autism community?

First of all, I'd like to say you brought up something so important because what we know about our kids is that they're all hypersensitive. I think this hypersensitivity is traumatic, but there is a huge difference between, let's say, a child who experiences some loss or grief or abuse and kind of shuts off and autism. It looks kind of like autism. They are withdrawn but it's not the same.

So, for us, there's nothing that “leads to autism”. However, being someone with autism in a neurotypical world is traumatic. People don't get how much work it is, but people also don't get how much work it is for the child.

I always tell my students, imagine I'm packing you off and sending you sending you to China without a word of Chinese.

You don't know the culture. You don't know anyone there who can help you, and it's terribly hot or terribly cold or both.

Imagine. I would like to see you functioning one day. Properly.

You know, with this overload.

That’s a great way to explain it. A few years back I wrote to my son, who is on the spectrum, with a similar message.

You can learn a lot about a culture and its language, and similarly, being someone on the spectrum in a non-spectrumdesigned world is difficult, isn't it?

Absolutely, for these kids, it is not just being different and dealing with a different structure in a world that's not adapted to their structure, but on the emotional level, they always feel there's something wrong. My patient will tell me I'm always the wrong child in the wrong place, doing the wrong thing. I mean, so what does that do to your selfworth? To your ability to trust yourself? To feel happy within yourself? If all you get from all around you is stop shaking, stop waiting, stop stimming, stop obsessing.

Our experience is that when the children feel better understood and accepted, they make a lot of effort to change.

To that point, there is an argument: Applied Behavior Analysis (ABA) or no ABA? Regardless of where you fall on that fence, can you tell me how you can see your approach/methods sort of bridging that gap (whether you do ABA or not)?

I come from a slightly different approach because, in Israel, the psychoanalyst is the one who treats the child, and the parent Exceptional Needs Today | Issue 18 | 79

THERAPIES AND TREATMENTS

is the case manager, and that means that treatment is built according to his in-depth knowledge of the child. They see the child there four to five times a week.

There's no one in this world who knows these kids better than the people who see them every day and work on their emotional state. So, they would coordinate with all the other professionals.

However, and this is a big however, it’s kind of tailor-made around each child. We do not send each child immediately to all the treatments because not all of them need them.

I think when you come from a standpoint of address the emotional needs of your children first, then whatever you do beyond that has an easier time falling into place. The first step informs the next step. No? Yeah, exactly. So, I think this emotional understanding of the child and understanding where the child's coming from is key so they can open up and learn new stuff. I think that is highly dependent on deep emotional work and this is our rationale.

This is why the therapist in Israel is the case manager. We also work very, very beautifully with others, with all professionals around the child and of course parents.

You know, I'm not against any system. I think we need to recognize the limitations. All of us have limitations. We must treat these children as children.

80 | Exceptional Needs Today | Issue 18

We do not “treat” autism. I don't treat autism. I can't change autism, but I can help this specific child grow and develop to the best of his or her capacity, and I know only two kinds of kids with autism: happy and unhappy.

Well said.

I'll give you an example, okay? I had to interview a little boy for the center. I saw a delightful five-year- old…he was obviously very anxious, and excited because he was waving and jumping and waving and jumping.

I said, okay, I'm meeting him his way. I started waving, and jumped, and met him at the doorstep.

He looked at me.

Because I met him his way, we both jumped in. He tells me, “Let's play pigs in space.”

No eye contact, hardly verbal at home, but I tried to meet him his way. So I worked with him like this, and you know after 30 min he was totally connected. He told me about school, told me about things that he likes, dislikes. I think we need to look to the child.

I agree. Tell me, in your experience, do you see more trauma in girls who are coming into your clinic? I ask because

THERAPIES AND TREATMENTS there's not as much information available about how autism manifests in girls. I imagine that can be emotionally difficult for a girl who is struggling. What would you advise the parent moving forward if they're concerned about their child?

First of all, let me say that we [the clinic] have more boys than girls. It's not just a matter of, you know, the ratio, but also a matter of diagnosis because with girls sometimes diagnosis comes much later, and this has to do with the fact that girls, on the whole, are more advanced developmentally than boys until the 5th grade.

However, some signs are there, and the parents should look for them. I think one of the things would be high levels of anxiety. Dysregulated or obsessional states you know, which girls exhibit as young as two. So, this kind of dysregulation accompanied by obsessions, or rigidity. Sometimes girls get diagnosed with ADHD. Another characteristic of girls on the spectrum would be girls tend to develop kind of alternative worlds, fantasy worlds.

Yes, that's great information, really. Your methods focus on emotional health. How do you see your method informing the future of autism treatments and enlightening how the world sees people with autism?

Yeah, let me tell you something and this is interesting. I'm on the editorial board of the International Psychoanalytic journal. So I get a lot of papers to review from psychiatrists, psychologists, and to my great disappointment, autism is very often discussed as a kind of a mental problem. So that needs to be changed. You know, within the neurotypical world, we observe how the child can exhibit or manifest the gifts that they have. We have all sorts of criteria, but I think the main thing for us should be that we want the child to be happy.

Happy. I agree.

So, if someone cannot find your treatment method in their area, what support or services might you recommend to help them similarly? How can they participate in Vista Del Mar’s center?

First, we provide consulting services all over. I mean, we consider the emotional needs of these kids. So, if someone from another state wants to consult us, we will always be happy to assist. I think that if parents have the idea that the child might be on the spectrum, first of all, they need to diagnose the child. Then, they need to find someone like a child therapist who could do emotional work because, you know, most child therapists don't just do behavioral work; they can do emotional work with the kids. Another thing we offer is supervisory services.

Okay, that is wonderful information. I appreciate that.

How would people who wish to consult with Vista Del Mar’s Autism Center begin that process?

All they need to do is apply online, and I get to them usually within 48 hours. That's another way I try to speed things up.

From that point on, I'll match them up with a therapist. I personally supervise all the therapists. I see each therapist every week to go over all the sessions of the week with each child.

There's nothing wrong with autism. There's everything wrong with us because we can't accept one another.

Wonderful! Is there anything I haven't covered that you feel is important and needs to reach people?

I think that what people need to understand is that there's nothing wrong with autism. There's everything wrong with us because we can't accept one another.

Website: vistadelmar.org/vista-autism-center/

Katie Foley is an advocate for The Arc of Northeastern Pennsylvania, where she runs Sibshop, creates and presents content and trainings focused on assisting others in advocating for themselves or their loved ones and assists in individual advocacy in Luzerne County, Pennsylvania. Her education is in communications with a focus on theater, and she has a secondary degree in elementary education. She also enjoys teaching an acting class for adults of all abilities that focuses on socialization and emotional understanding through acting techniques. She has written You May Never Be French, a children's book that looks at autism through a cultural lens. Katie has also written and contributed to other children's books and has been a contributing author for Autism Parenting Magazine and a guest blogger for other nonprofits. She is on the Family Advisory Board for Community Cares Behavioral Health in Pennsylvania and a founding board member of The Art's Alliance in Carbondale, Pennsylvania. Katie also enjoys volunteering for Equestrian Special Olympics; however, she is most grateful for her role as a parent of exceptional children who teach her new things about herself and life daily. She is a content writer for Exceptional Needs Today magazine. 🌐 thearcnepa.org

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MY WORD

A Mother and Daughter’s Fight Against Disability Discrimination

By Susan Russell

82 | Exceptional Needs Today | Issue 18

MY WORD

W

e all can contribute and play a part in illuminating the "World of Autism" by celebrating diversity and embracing all matters of differences between children, teenagers, and adults in society. Autism is a way of being, and only individuals on the autism spectrum can fully fathom what it is like to be autistic and the emotions and experiences that go with it. Discrimination is against the law, but what does one do if the laws do not follow through and protect the vulnerable members of society and injustice prevails? I am Maggie’s mother and our journey for justice was long and difficult, day in and day out, and what happened to us can happen to you and your college unless you fight the fight.

Our story College Algebra is "the politics" of Math doled out by the administrations and Board of Trustees of Colleges and Institutions of Higher learning who refuse to explore "alternative pathways" to help students succeed and earn their degrees.

Maggie was not in a position to meet the algebra “requirement” set, and we communicated this with her college in order to receive an exemption. Maggie's application was accepted and approved by the administration before graduation; despite that, she continued to receive false emails stating, "Your degree has been approved," followed by, "I regret to inform you that you do not meet the requirements for graduation at this time." When we proceeded to pick up her cap and gown, we soon discovered there was not one waiting for her because the administration failed to put her name on the list. Our hearts were shattered.

On May 9, 2019, the college kept Maggie from graduating in cap and gown, walking down the aisle with her friends, and making lifetime memories. There is no do-over because this was a once-in-a-lifetime opportunity. The autocratic behavior and act of ableism displayed by the administration were disgraceful and perniciously injurious to Maggie because they took her spirit and broke it, leaving her with an overwhelming sense of failure, worthlessness, and rejection.

From the very beginning, College Algebra was Maggie's Achilles Heel, but with her multiple disabilities, she persevered and triumphed to complete 93 semester hours for a 60-semester hour Associate of Arts degree with a 3.59 GPA with honors and awards. It took Maggie three years instead of two years to earn her degree, which is a testament to her internal fortitude to meet adversity with phenomenal courage and hope.

Maggie was supposed to graduate in 2019, but be that as it may, it was the administration's decision, along with the Board of Trustees in Gulfport, Mississippi, that denied Maggie her degree because she has "dyscalculia" and can never pass College Algebra. The Disability Law in Mississippi regarding an Associate of Arts degree states, "It is within the continent's rights to petition (college) to waive and replace College

Algebra with a comparable course." I sent nine letters of correspondence to the college, and they did not respond until I filed the lawsuit. The Social Security Administration recognizes all of Maggie's disabilities and challenges, which include severe impairments, autism spectrum disorder, post-traumatic stress disorder (PTSD), depression, mental illness, and dyscalculia.

She also has a reading comprehension disability.

To the college, Maggie was invisible; her disabilities were invisible, and their silence was deafening. We believe the college's primary concern was maintaining its reputation and accreditation. With intentional forethought, I feel the college lied in the depositions, interrogatories, and Absolute Release with Covenants to achieve its goals, and the judge sanctioned it. The college even claimed in a deposition that "Maggie was not working on an art degree," which was simply not the case.

Ultimately, the college and the Office for Civil Rights (OCR) entered a Resolution Agreement "without our knowledge or consent" and offered Maggie three options: Quantitative Reasoning, Visual Basic Programming, Statistics, and two other options with three courses for one College Algebra course. How fair is it to demand that a student with dyscalculia be required to take three courses for one College Algebra course? Thereupon, they offered Maggie nothing because the prerequisites for these courses were Intermediate Algebra and College Algebra, which she was not "qualified" to take. They do Exceptional Needs Today | Issue 18 | 83

MY WORD

not even reduce the number of Algebra problems on the exams.

Is it fair that a student with dyscalculia must take 40 problems on a test? As a direct consequence of their actions, we were denied access to participate in the significant decision-making process covered under the Disabilities Education Act (IDEA.) On May 31, 2018, the three Civil Rights Groups, the NFB, COPAA, and the NAACP filed a lawsuit against the U.S. Department of Education (OCR) over the process of dismissing discrimination claims, "without investigating" and "asserting that the Department changed its complaint process to strip students with disabilities and color of their rights." On February 6, 2020, the lawsuit was settled, and the OCR was instructed to reinvestigate seven hundred cases. The Resolution Agreement that the OCR and Maggie's college went into together was illegal and discriminatory. "There is no justification for injustice in education" and none in a courtroom from a biased judge.

According to the law, Maggie had been denied her right to be heard because she was not allowed in the conference room 84 | Exceptional Needs Today | Issue 18

with me, the judge, and all the attorneys. Where in the law is it written that it is ethical or legal to deny a person their right to be heard under the Constitution? Where does injustice end and justice begin in Mississippi? Maggie never had a chance because she was "a victim of disability discrimination" by the college, the OCR, and a prejudicial judge.

That being the case, Maggie was forced to sign the Absolute Release with Covenants, under duress and against her will, with threats from the judge. To this end, the document was never explained to her by her attorney, and the wording in this document is confusing, redundant, excessive, and difficult to understand without an attorney if you have no disabilities. It was forced silence and infringed on Maggie's First Amendment Right to Freedom of Speech. It also implied that "she had no disabilities," which made the document untrue. The law states that one does not have to sign any document of any kind if it is based on fallaciousness. "Oh, what a tangled web we weave when we first practiced to deceive." This was our nightmare.

MY WORD In our relentless pursuit of justice, Maggie and I never wavered because we were steadfast and knew that we could persevere through anything together with faith and hope. "Individually, we were one drop, but together we were an ocean." No bond is closer than a daughter and mother fighting the fight together.

Maggie is "an awesome and wonderful daughter" who looks through a kaleidoscope into the world, sees nothing but vibrant colors, and envisions the goodness in all the people she meets. She is kindhearted and has a gentle soul that is filled with immeasurable compassion for others, and she would do anything for anybody just because. In the blink of an eye, Maggie's smile can splendidly light up a room, reflecting her resilient spirit. Maggie and autism are connected by the rainbow, and you cannot have one without the other.

To see Maggie, you would never know she is autistic, but in her innocent mind resides our younger daughter. Her father and I are so incredibly proud of all her accomplishments and for being so courageous and resolute before and after the lawsuit.

She has demonstrated with determination that she had the power of absolute positivity to fight and retrieve her Associate of Arts degree that was stolen from her. It is hanging on the wall in her room now, with a gold leaf frame surrounded by a blue velvet matte, and we admire it every day. God guided us through our nightmare, and we won the battle.

Sadly, all the same, I cannot measure the tears shed or how many times I held Maggie in my arms over the course of five years, weeping from despair, asking, "What did I do wrong?"

I replied, "You did everything right." As a mother, every tear Maggie shed was heart-wrenching for me. The college showed no remorse, had no empathy at all, and had attitudes that were arrogant and inflexible, and demonstrated that they were extremely indifferent to how their actions affected Maggie. They broke their own oath "to have an ethical inclusive approach to teaching, to inspire excellent excellence and accelerate achievement, to accept responsibility for appropriate actions, to be committed to honesty and ethical behavior in all situations and to respect the unique qualities of all individuals." They discriminated against Maggie's disabilities and, in essence, were responsible for negatively impacting her life. Consequently, it will take years to heal. Is this an ethical, inclusive approach to teaching?

In our relentless pursuit of justice, Maggie and I never wavered because we were steadfast, and we both knew that we could persevere through anything together with faith and hope.

I have recently presented our disability discrimination case to Mississippi's Federal Senator and Federal Congresswoman, who plan to do their best to bring about and submit a bill before the legislative branch for consideration regarding, autism, disability discrimination, and dyscalculia, for students like Maggie on the autism spectrum, who are being forced to take mandatory College Algebra. Many colleges seek to raise their status by setting a high mathematics bar like College Algebra and refuse to compromise even when the law states that they can. This behavior is their badge of honor. Where was the college and judge's honor when they did what they did to Maggie? I am Maggie's mother, advocate, and protector from those who would use the law to discriminate, retaliate, and cause her harm in this world. "Injustice may delay justice, but it can never extinguish its eternal flame." Never Give Up, Never Surrender.

Maggie was an academic success in her own right. She was a member of Phi Theta Kappa, the National Business Honor Society, and the recipient of three art awards: the Jackson Pollock Award "For the Most Expressive Artist, the Henri Matisse Fauvist Award, "For the Use of Bold Color." She received an "Honorable Mention" in Computer Art for "Vincent Van Gogh in the Starry, Starry, Night Interpretation. Maggie has been on the President's list once, the Vice-President's list three times, and is the recipient of a President's 4.00 scholarship certificate. She is the author and illustrator of her first published multi-award-winning children's nonfiction book, "Artism and Me, Autism Within My Heart in Color," the last being the NIEA National lndie Excellence Awards in 2023

Susan Russell explains that first and foremost in this world, she is a mother with an immeasurable and undying love for her autistic daughter, Maggie Russell, who has multiple disabilities and dyscalculia. She states that she has loved her from the very moment she was born and, since then, spends every precious minute of every day with Maggie, helping her to navigate through life with confidence and without fear. According to Susan, Maggie is her enormous joy, and nothing she has accomplished in life before her birth can compare. A recipient of two associate degrees, Susan, however, chose to pursue a career in the medical profession as a transcriptionist, dental assistant, and receptionist, as well as an outpatient/registrar in hospitals and doctors’ offices. Subsequently, she spent twenty years pursuing employment in these career fields. Her lifetime has been spent advocating for Maggie’s right not to be bullied, criticized, alienated, or become the victim of discrimination. Susan enjoys photography and writing, but most especially, she loves supporting Maggie and her artwork because it is filled with vibrant and stunning colors that can impact and elicit emotions in those viewing it. It brings smiles to the faces of strangers who do not even know Maggie. Ultimately, Maggie is not defined by her autism but through her artwork that shines a light into the world of autism.

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FINANCIAL FOCUS

The Value of an Expert Guide for Exceptional Needs Family Planning

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

If

you’re part of an exceptional needs family, your planning is unique. It is unique because your goal is different, and your timeframe is longer. Actually, your timeframe is generational. When planning for the rest of your lifetime and the lifetime of your loved one with a disability, you must ensure your plan works through the generations. This type of planning requires a unique perspective and specialized knowledge. A perspective and knowledge that most families just don’t have will be imperative to ensure your loved one has the proper structure so that they will receive all the necessary supports that will allow them to live their best life possible. You will need an Expert Guide!

What is an Expert Guide?

I like to refer to this expert planner as a guide because your plan will be a journey filled with twists and turns, changes, modifications, and adjustments, and you will need your guide to avoid any missteps along the way. Your guide needs to have specific knowledge of government benefits, taxation, legal 86 | Exceptional Needs Today | Issue 18

structure, financial strategies (investments, insurance, and more), estate planning, trust management, and techniques for communicating the plan with the next-generation care team.

Your guide needs to know not only how all these areas work but also how to coordinate them all in the appropriate fashion to provide for your family and your loved one.

Selecting your Expert Guide In selecting your guide, you should consider if they are part of a team. The reason for this is that your plan is multigenerational, and if possible, you want your guide to be multi-generational as well. As you build your plan today, you need this guidance and advice, but as you age and then die, the next generation will also need guidance and advice. Due to your family’s unique needs, the ideal guide will be a member of an organization in which the specialized knowledge your family continually needs will course through the veins of the organization, not just in one person.

FINANCIAL FOCUS It is rare to find this level of expertise and specialization, and many times, it will require very difficult decisions if you have current advisors who do not have the expertise your family needs. You will have to decide to find a new team of advisors to have a special needs plan that will truly work for your family through the generations. This can be challenging. However, the results of an incorrect, incomplete, and uncoordinated special needs plan translate into your child with a disability being left with no support and leaving their siblings (or other family or friends) with a catastrophic mess to clean up and no idea how to do it.

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.

The guides you are looking for are usually financial planners or attorneys specializing in this type of planning. As you interview possible guides, you will want to ask the following questions:

• •

Have you had formal training in special needs planning?

•

Can you explain why tax planning is so important in this type of planning?

•

Please describe two government benefits you have found to be applicable to families like ours.

•

Do you have a team that can help us if you die, are disabled, or retire? If yes, can you describe the expertise of your team members?

•

What is your process in planning and supporting our family?

Do you do continuing education in this field? If yes, what is it? How often?

The above questions will certainly help you select your guide.

If you have current advisors, asking them these questions will help you determine whether you are working with the right ones or need to find a new team.

You can find additional questions by downloading our Special Needs Planning Guidebook from www.ASpecialNeedsPlan. com. This guidebook can help you ensure that you are working with the best team to support your family and your loved one with a disability. Contact a financial advisor who specializes in serving families with special needs for more information on how to prepare for the future. The team at A Special Needs Plan is driven by their purpose of Leading Families to Independence through an ongoing, multi-generational plan. We are passionate about families confidently moving forward.

Ryan F. Platt, MBA, ChFC, ChSNC, CFBS, is a registered representative of and offers securities, investment advisory, and financial planning through MML Investors Services, LLC, Member SIPC. Securities and investment advisory services are offered through qualified registered representatives of MML Investors Services, LLC, Member SIPC. A Special Needs Plan is not a subsidiary or affiliate of MML Investors Services, LLC, or its affiliated companies. This article is not a recommendation or endorsement of any products. 🌐 aspecialneedsplan.com SQUARE-PHONE 704-326-7910 MAP-MARKER-ALT101 N. McDowell Street, Suite 120, Charlotte, NC 28204

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